Medulloblastoma Diary

I’m 27 years old, I live in Calgary and I have a wife and two children. My wife is 27 years old as of January 26ty. Mt first son Ethan was born November 24th 2007 so is 3! My second son William was born September 24th 2009 so is 1! Yes both the 24th as they were planned cesarean. I worked in IT as a CNC Analyst on JDE Edwards at CNRL. And that is/was my life, and was pretty awesome. I was born in England and moved here in 1994 with my father (Clinton John Lewis), mother (Angela P Lewis) and brother (Dylan Lewis) who I all know and love well to this day. They are all with me during this.

 

 

 

Pre-Doctor

So for the diagnosis originally it all started in October 2010 when I was getting light vertigo after a soccer/football collision. Just hit heads, felt fine, but when I rolled around got a slight nausea shake. As time went by the shake became more of a spin, to the point when I needed to sit on my bedside for 2 minutes before showering or I would spin and throw up.
When taking kids to daycare meant throwing up as I changed them and putting them up in a car seat made me throw up. I threw up 3 times walking to the car once, I always remembered that. And then driving to the day care I had a shopper’s bag ready. It’s weird I lived like that for a month, but I had gone to a walk-in and other than that was functioning.

Walk—in Doctor.

Anyways the walk-in doctor checked my ears and I had fluid. Did the hot water, removed the fluid, felt better walking of course but seemed vertigo, nausea and vomiting was still there. I then did a second visit and he asked about weight loss, hearing questions. Then he referred me to an ENT (Ear Nose and Throat specialist.

The Specialist ENT Doctor.

The ENT seemed to think it was BPPV (Benign paroxysmal positional vertigo) as I had all the symptoms: nausea, vomiting, dizziness and lack of balance. I had no headaches yet at all. When I closed my eyes with him and tried to put feet together I fell. Once I told him about the collision and he scoped me he gave log rolls and BPPV adjustments.
Two weeks of those, seemed OK but my wife was not sure if theses crystals were moving or just making it worse. One night (Nov 19th) I noticed the exercise felt like I was having a stroke. Like crazy pressure so I stopped. If you’ve done a log roll you know it’s pressure on your head. I cooked on Sunday night (Nov 21) threw up and ate it, was great har, har. I was so used to it didn’t think. Next morning took the kids fine, but then it went sideways.

Monday, November 22nd.

On the train I could not read my Blackberry text, it was in alien, seriously. Light was bright, platform and sidewalk was wonky and I had to use lights to balance. Once I got to the office a colleague said I looked very thin and went with me on the elevator wondering about hospital. Once I was in the office someone came by and their face was a blur. I told my colleague and he thought it was time for hospital and I went to the clinic.
If you read the decadron article (recommended!) you’ll see the local clinic did a great diagnosis. I was throwing up again like crazy, they took me in, and it seemed like migraine. I was getting bad headaches etc. The doctor and nurse tried all those drugs and then decided on a CAT scan. . The poor nurse and doctor must have been surprised the CAT scan showed a 2cm x 3cm tumor in my cerebellum. It was not a migraine. I had medulloblastoma. The rest was to come. A hospital visit to Foothills Hospital in an ambulance came a few hours later and my distraught wife. I called my family from the waiting room , I doubt I made ANY sense.

Surgery

     

Posted by Ryan A. Lewis on December 30, 2010

 

So after my trip to Foothills Hospital, this was an excellent place with great neurosurgeons, medical staff and nurses. If you go there it’s great! Or erm, as great as a hospital can be of course. Their ability to be kind and helpful was paramount. I gave them all thank you cards and they said they don’t get that many positive responses. This is wrong, everyone has a job, but it takes someone special to take it seriously. I don’t even know what it takes to be so caring to someone you have no reason to be.

A private moment I remember was hearing a nurse crying over someone who passed away (I stayed in neuro department, heart, stroke, recovery etc.) who was much older than me and heard her say you think she’d be used to it but she wasn’t. Then I heard he say she would be OK tomorrow. Seriously? That is epic. These people deserve all the respect we can give them.

So back to my situation. I was at Foothills and Tom Baker area, which meant great specialists. I met Doctor Wong who was a vascular surgeon (veins I believe) but was ready to operate if needed. I had an MRI and CAT scan to confirm. I was on the right drugs to keep the pain down and my family was filtering in. The first week was a big cloud, but the key was the diagnoses which was a tumor and also which doctor was best suited to operate.

The doctor allocated to me was Dr. Gallagher a cerebellum specialist who usually operated on young children aged from 0-12., with a few older. Try to find a 27 year old. Wait that would be me, try a  twenty year old. My brother’s girlfriend, Nikki found a book with a twenty year old who has been fighting for 10 years, that’s what inspired me to write this on line so anyone can get some information from me!

Anyway the good news is she was available and other than older and younger people this was a rare case and she took it. She was my surgeon with a few others although I did not know all the team members. There was a young doctor and a Mexican doctor who I also saw a lot who helped greatly. I heard they were very tired after the surgery as I remembered it was supposed to take 4-6 hours and I told it took 11 hours. I was in a prone position on my belly and had a tube down my throat.

The surgery went very well! I was very nervous but it went well. I had my tumor sent to the U of C for diagnosis.

I ramble lots here but I know you’ll get the info OK. Mm the recovery was rough. I woke up and really excited to be alive. That sounds terrible, but I was REALLY excited. But frustrated. I’m 6’4 and strapped to a bed in a recovery room so very dehydrated. I should have drunk 5 litres at midnight but I sipped and shut down. I was busy writing journals I never wrote for my family! I may not have made it, sheesh. But yea eat and drink lots before surgery my god. You never know if it will be double the estimated surgery time!

So some of the warnings are anesthetic, but one that came true was eyes. They said I might need a transfusion and blindness was possible. Not good but I did not get that. I did get a lazy eye that I still have now so in order to type I need a patch. Patches are great so you can use one eye. My double vision spot is about 1 foot x 1 foot and so I can’t watch 3D movies or TV very well. Sounds like a small thing but it’s really annoying! What else…my vertigo is all gone after the surgery, it’s pretty awesome. As I said it went pretty well, it was the recovery that was brutal. All dehydrated and strapped, my eyes wandering. At least Steph could stay me, not having ant body there would have been weird. The nurses were great everywhere though, that’s a great point.

So one last rant; in on Monday November 22^nd, in surgery November 26^th at 9am to 8pm! It happened so fast! What luck, imagine if that team hadn’t been available.

The Tumor-Medulloblastoma

Posted by Ryan A. Lewis on December 30, 2010

After removal of the tumor I found out that it was an anaplastic medulloblastoma. This basically means a highly malignant tumor in the cerebellum. The medullo part is the 1 in 2.5 million chance at my age. Not sure how much malignant changes that (50%) and my head nurse Ron White? I hope that’s right and Dr. Gallagher were not happy about the results and neither was I. I was happy they came and told me in private as I mulled it over. All the stats kind of roll over me, but here is how I see them.

• 2.5 million to 1 chance, but 14.5% of brain cancers in children
• Malignant is cancerous
• Grows in the cerebellum, mine was in a recess
• Is not genetic, is caused by RNA acting up. Made me remember biology 30.
• Anaplastic means poor cellular differentiation, losing the morphological characteristics of mature cells and their orientation with respect to each other.
• It had veins. Like Starship Troopers in that little bellum of mine.
• The rates seemed to be 80% survival after 5 years with children. Who knows with me?
• The rate for radio (now I know more to come) was 70% removal rate after 5 weeks. That would be brain and spinal.
• No such thing as a cure, you’re always tested. You can’t see less than a million cells of cancer! Goal is no come backs. Comeback means chemo, maybe.
• MRI’s suck

 

Irritation, Mania, Memory, Mental faculties.

Posted by Ryan A. Lewis on December 30, 2010

Before I take a break from typing for 3 hours I wanted to point out the testing after surgery was disappointing.

You’ll go through the same I’m sure or maybe not! A simple maze was tough, clocks were hard. I memorized one maze and did it quick, next maze was supposed to be 2 minutes! I couldn’t do it! How simple that should be for someone lake me? I used my brain all day every day, planning everything.

So with a therapy session after the fact (4 weeks) my wife and I pointed out the following:

• Communication 6/10
• Irritation 3/10
• Anxiety 4/10
• Sight 4/10
• Balance, vertigo 7/10
• Motor skills 7/10

The score was what I feel I’m at. I was not expecting scores under 5 and that made me angry. Like irritation that was not even discussed. I’m not sure if that’s a permanent thing I need to work on or not. I’m a placid guy, and even very placid on some topics, but with those who are close I get irritated quickly. The anxiety I have never had, hard to rub my teeth with my tongue like some heroin addict. Sight is as I said, weird, not as I expected and not what I want. I t was supposed to get better But I am impatient. It may just need more time and effort! Communication, balance, motor etc. is all doing so much better than before. I went from falling over trying to run around after surgery to being much more confident.

My point here is that even at 27 years old there was lots to have come unexpected. How about don’t all walk around especially on anti-inflammatories or you’ll injure yourself. How about you have to relearn how to think the same way and get off those weirdo drugs at the same time! I might get off steroids’ calm down, get back in balance and radio knocks me on my energy arse. At least then I can practice my mental skills.

 

I was performing tricks for my friends and family. A great builder of my motor and thinking skills. I got my first new tricks last week to practice and already learned the paddle move which was nice. Found that the finger skills for cards and sleights are, well, going to take a while. Funny I left my cards in the car. Laughed about how it was a brainwave deck, can’t remember it. Found out it was actually a mental deck. How ironic. And how surprised the salesperson must have been after hearing my explanation.

Well hope that clears up that no matter what you must expect mental changes from brain surgery after weeks. HAHAHA that sounds ridiculous, but I seriously thought at my age I’d be running backwards after 5 weeks. I guess they count my ability to look after my kids from discharge that was December 7^th. I was thinking November 24^th. Either way as of now that’s either 3 or 5 weeks. They said 6-8. I’m rushing and need to calm down.

Going to a movie tomorrow, my first since being discharged!!

 

Currently…

Posted by Ryan A. Lewis on December 30, 2010

 

About?

The about page has a snapshot of my life. Right now I’m home from my surgery and decided I need to write something for all the people (that 1 in 2.5 million) who are in my situation. Or similar to. As I mentioned I’m 27, which is a relatively rare age for someone with medulloblastoma. I may misspell that word wrong now and then but that will help for those searching. I do have children and a wife, which has been especially helpful considering lots of people do not get the luxury with this.

My parents and brother are especially caring and there to support me which has been great. My co-workers and friends are unfortunately experienced with strife, but that has made them especially caring and I hope that comes from great choices! No I know.. Again, having all this support was not expected but very appreciated. Many do not have such help.

So, all in all my life is quite good. I had/have a good job that I worked hard in and setup a good platform.  There were some things I forgot or didn’t do which I hope to highlight to you later (perhaps a category checklist would be better). Yet I think the key with children is expecting the best, planning for the worst. Many of my friends took that step too late, but some took it early (marriage0 which is smart!! Never too late or too early seriously.

That’s enough for one post.

 

 

Radiotherapy.

Posted by Ryan A. Lewis on December 30, 2010

 

A blurb on my radio would be that I learned lots recently. I start January 6^th for a warm-up after doing my mask and setup last week. Then the real stuff begins January 7^th and it appears I do 28-30 sessions (Feb), or 5 weeks, every day except weekends., for 30 minute session’s. I think the duration will be depending on my outcomes.

The fact is that it is 70% chance of removal. Which means all they can see is gone, then I do MRI like 3 months and push out sessions and hope no reoccurrence. This is the ideal of course. There is no 100% but 70% is very high, I see that. It’s a huge change over the years. Radio has gotten really good from years ago, my family  doctor was a neuro many years ago on the original gear and it had very little expertise. Now my doctor can associate everything, even that I am right handed and where to avoid. It’s very good that way. My uncle is in medical services and has also reiterated how good the new equipment has become. No cooking my spine I guess.

Now I’m positive but I’m being realistic now too! There are some serious side effects I hope that don’t happen but are there. Spinal now adds more to the setup as medullo can get into CSV or spinal fluid and travel. My post op MRI showed no spread, but fluid can carry of course. This means that I have lumbar on January 4^th check the fluid. Hopefully this is also clear and I’m going in pretty clean.

Back to what I was saying! I have two kids, but never think you won’t want another one 10 years later, that’s crazy talk. Hair loss. They gave me pamphlets on the spinal, like nausea, throat, energy, stomach etc. The other man had problems with his internals and had 70% saliva reduction after. Skin irritation is another problem, and with cold and pale skin I will be using what they provide. I think that’s the major ones, there are so many.

Fatigue and diet is a concern. I l0ost 35lbs with the hospital, and have definitely gained since with the decadron but don’t have a scale weight side by side to know. I recommend you do a before and after with a common scale for this. I think the beast food is high for red and white blood cell production, so a dietician should  be able to help. I going with fresh only or nuts/fruit. So like bananas, nuts, sandwich meat and green water drink. My friend brought me a big box of green drink  (like powdered greens with water). 

I was going to drink lots of milk shakes, but they recommend no milk products. Makes sense, nothing raw raw and that either. Just fresh. Yet to bulk up I eat EVERYTHING. I want lots of weight. I don’t know what I will do about muscles as the drugs and lack of ambition is a fight. I also can’t be injuring myself. I think light work and swimming was the best bet,. That can be covered somewhere now, I’m rambling.

 

Decadron or Dexamethasone

 

This was the steroid that was prescribed to me in Shumir in Calgary (urgent care). I was prescribed other things, but this one is something that should be researched or considered somewhat. An important fact here is that this drug would normally be applied via a cream or special application. As my surgery involved brain/skull the application has to be by pill.

The side effects are hard to control, and it’s an anti-inflammatory of a tumor in my case. At the top I was at 16mg a day for many weeks, then down to about 12mg for a few days, then 8mg.From about 22^nd January to 30^th January I  will have done around 350mg. I will be tapered down to 8 x 5mg or 4mg a day as of now (December 27^th2010). That reduction has been huge, and is needed to ensure my body doesn’t have a bad drop. From what I have read 16mg a day was a massive amount. I don’t think 4mg is all that great , but as a side note Shoppers Drugmart only had 0.5mg pills which made conversions a pain and a half. Please help the p[person who gets these until they are confident. And they will fake confidence …see mania.

 

When I came into the urgent care I was being treated for migraine, so from what I can vaguely remember I was given morphine, some Tylenol and other pain medications that really did not help pain at all. The pain started rushing in after the IV stuff. I mean I was throwing up repeatedly so I was given gravol stomach IV as well which provided some control.

Than you someone who mentioned steroids and decadron because this is the only drug that stopped this extreme flowing pain, pressure, nausea and some of the vomiting. It could have been the cocktail at that point , but for pain at the very least it was the steroids.

So now that the steroid, which by the way is called glucocorticoid and Wiki calls it an anti-inflammatory immune-suppressant. Mmm, OK makes more sense there and the part about being 20 times stronger than cortisol is scary, but 4 to 5 times stronger than prednisone is ridiculous. Simply.

Now for the side effects I endured:

Insomnia (I am writing this at 2am1), hot and cold flashes with sweating, increased appetite like 9 meals a day, fatigue to limbs, overuse of knees caused massive pain one night (degeneration of muscles), anxiety, irritation, nose bleeds and build up, fluid retention in the ankles, heartburn, muscle weakness, impaired wound healing (I fell and my damage was internal that moved to my hand. Then a giant bruise and healing took 3 weeks, mood swings, hypertension, zits on my chest? Weird!

 

 

Lumbar Puncture/Spinal Tap for Diagnosis

Posted by Ryan A. Lewis on January 5, 2011

 

So on Tuesday (yesterday) January 4^th 2011 I went to Foothills Hospital with my wife at 10am for a lumbar puncture. There is lots og information on these, but they are definitely daunting. My wife thought it was funny to research it, and I have to agree. Not like you go for the same reason, and the results are the same or anything. Yet recently I’ve been wanting to know risks ahead of time to formulate better questions to the doctors and nurses.

Problem with that is you ask under qualified personnel ridiculous questions! So I’ll try to answer some Ryan Lewis specific ones for today for your own question formulation!

 

At the Hospital

When I got there they had moved our appointment from Tom Baker to a room up in X-ray. It wasn’t ready really, and was missing items I was told. After I got ready we went in and filled out all the forms. I found out they would want me on bed rest for at least 2-3 hours as it day surgery. OK so there were a couple major things I should have known. My wife was to pick up the kids at 5.00 pm but at this rate I would be there until 3.00pm.

My heart rate went high to 133, I usually sit around 90-100 during these extra special times. I was nervous, late, wrong room; nurse wasn’t sure about the paperwork, nervous system, spinal, symptoms on internet, nervous system, and spinal. The last two are repeated as I couldn’t get them out of head! When she said they could tweak my sciatic that my mum has tweaked I was like NO THANKS! That’s a nervous system in my spine. I guess that allows them to know where they are.

It was a lot of talking for nothing as when Dr. Chan came in he was a young confident man and explained all my questions well. Basically I was a little worried about drug combination and sterilization but that room and setup is fine. They do tons of these and cancer patients are not special.

The Puncture Itself.

                                   

He numbed with local antiseptic, wiped lots, went very slowly once it set it, and took like 3 rays and checks to make sure. Turned me sideways to ensure he was in well, talked and explained the whole time. Once he was in 5 minutes later I had 4 vials and he asked when I wanted to remove, and was done. It was that easy, and I told him well done. It was a good experience for both of us! Wait, good? You know what I mean.

Resting.

So really this was where  the problem came again , as once we left I had all the right info. Caffeine can stave off lumbar headaches. I should lay down to remove pressure from the incision. Lots of water and food is fine, therec was a misnomer that eating was not allowed. On steroids and my appetite it was my surgery all over again! Argh! That was not true, I could eat all I wanted to and did. Now that above sentence sounds great, but I was not in their computer and the duties or whatever was not sent to my nurses. They did the best they could but called him and in the transit he decided it was 4-6 hours with a discharge time of at least 6pm! We had to page for any problems and he didn’t answer. Well my  wife left to pickup the kids at 4.00pm (only 4 hours of laying on my back not going to the washroom) and the nurses found the original papers. That said 3.00pm.

It wasn’t her fault, she tried very hard to get hold of people and in the end the extra time allowed me to be safe (I did have brain surgery 4 weeks ago or something). And I read and walked and got adjusted. So we left at 7.30pm and had dinner before gettng the kids from the grandparents and going home for the night.

To Sum it all up.

As you can read it  was a really long process that I waqs expecting to be a 30 minute i9n and out. Not quite and I guess I should never take these things so lightly It is called “spinal” tap when you think og it! No results yet.

 

The things that caught my, and sholud catch your attention for the discharge for this was: no baths. Stewing in water can open the wound and cause infection. Where does the infection go? SPINAL FLUID CSV. Not good, the recovery if that occurred would be days in bed rest being drained. Ew! The other was no immediate showers, taking it east, watching for bruising, bruising, halos, all that stuff was explained and obvious. Mine is being checked by my wife and is healing great, there was a tiny bit of blood he said which healed. It’s good as my IV, bruises and cuts heal so weird on steroids. I went from wolverine healing to old man in days!

 

All the best for your next lumbar my friend!

 

Radio prep today

Posted by Ryan A. Lewis on January 6, 2011

 

My radiology prep for today was moved earlier for a few hours. We made the pad and mask and have done all the cat scans and bolt downs. This will be doing the actual mechanism I believe to get used to it for the live machine tomorrow. The machine broke I guess, so I’M guessing the moving part was broken so would make this redundant.

 

No-one seems to understand how worrying this is right now, as I thinking how close it is and how fast it came. I don’t have a good idea what diet I should have, and didn’t get what I wanted of course. Every time I go and do something there is something else, and my prioritization does not work and I have little help with that. It’s something I have to look at as soon as possible, tonight I’m going to make a list and timetable and split over the calendar. I think prioritization and criticality is something I have been missing lots.

 

The most worrying part for me is what I will be like after. A little tired perhaps, but the same. My poor memory so bad I am amnesiatic? That is the worrying one. I’ve lost faculties and understanding that I can now change and make better, others I will learn like cooking passions and writing. If I’m completely different, then none of this matters. My family is new, etc. That is very scary I think. I always keep positive but as an adult how can I ignore a possible Fact? Isn’t that bull headed optimism, being unplanned? Shooting high, aiming high etc.

 

We’ll seems I’m not in a good morning mood, but wanted to point out I’d expect any adult with a family to be worried about radiation. I’ve explained a lot of facts but not how I feel about this process actually beginning in my life. It will be 5 weeks+5days after tomorrow. That is my new job, a radio-subject. And not radio-ga-ga.

Have a good day. I’ll let you know how it is tonight.

 

 

First Radio Treatment Today and Yesterdays Mock.

       

                 Posted by Ryan A. Lewis on January 7, 2011

Hope this finds you well. The mock treatment went well, we eventually found where they moved us to and I changed and got in at a good time (around 12 noon). The tests were long and the mask was tight   . The lumbar made the bench very uncomfortable as the full time was 1 hour. They were hoping 45 minutes but they got me really straight and went for it.

 

 

Radiology 1.

 

         

Posted by Ryan A. Lewis on January 7, 2011

I finished my first radiology appointment today. It went well, timing was good and I got in quickly. The session took about 45 minutes I think, with a lot of keeping me straight. I was surprised how fast the radiology part went. The machine was blue and large, and did the job great. I noticed the blue strobe light for sure smelled of sulfur when it goes off, something I thought I smelt last time but at this proximity was obvious.

That was about the only thing I could tell that is working. And the multicolored lights I could vaguely make out through the mesh mask That’s pre-made, I think I mentioned earlier and a neck foam base. The hard bed is not comfortable and I took 2 codeine before I went as last time as per my blog my back hurt. This time was quick , but I did get numb on my arm from lack of room to lay my arm, and my feet I think due to a bolster that provided more discomfort than good.

So really it was just discomfort. Forget swallowing for me, the mask was too tight around my chin. I’ve put on 25 pounds since the hospital to build up for this anyways. That seems to like my  belly and neck especially! I also went and got a haircut when I was done. They think I will be much more likely to lose my hair in a few weeks due to the area, and keeping it short will reduce tug. I also must wash gently, all aesthetically unimportant to me now but I was thinking about them lots as per my blog.

I think that was about it. I was able to go with my wife to Wal-Mart and get my blackberry back (it was returned after getting a temporary one) which is good news for me and my work I think), and go to Best Buy to return the new one, as well as get a haircut so I have nice manageable hair again. That means that there was no pain, no discomfort after the fact, really a good session. A good first session., My belly felt OK, I’ll cover my diet.

I did want to mention the nurse/doctor said it is common to feel worried for the mock rather than the first. Whether there is radiation or not, the actual going and strapping ids all the same. I agree with this 100% as you can’t tell there is no radiation other than what I said and of course after time goes by any side effects, creams etc. they will diagnose and support as we go which makes more sense now.

I have to realize my planning and questions are just that sometimes. Also making sure to ask the right people. I will be emailing the main doctor I work with now, who my wife saw the as he went by and waved, with a few things I have read and such. Yet they answered many questions at the radio.

So I finally put together two green+ drinks in bottled water, one banana, 2 large pineapple stems, bunch of grapes, two granola bars, large bag of natural cranberry date blueberry raisin walnut pine nut almond mix. This was a ridiculous amount of food even though I didn’t eat lunch and had steroids. I did not eat the banana, granola mix (¾ not eaten) and one green drink. I ate the fruit on the way, and the ¼ of granola bar and a green drink. This was very filling.

They mentioned that anti-oxidants may inhibit the work of the radiology especially if the body is not used to it (so that would include new vitamins which I wondered0 as the body has to adjust. The green+ does mention the adjustment periods. I’m not sure if they have anti-oxidants like tea for instance. I think I will switch to water for there, and green drink for night time at low dose. So really, to mix in some sandwiches for freshness as well. They were happy with the fruit and such and the question itself. To me they are saying food is good, so I’d stick with fruit and vegetables with granola a good idea if you can find the good stuff. Water is always the best drink, but I’ll highlight green+ was recommended by a good friend and knowledgeable person and I am definitely going to use it just not as a before supplement.

If think there is some good information here about my first session. So now I go to the weekend for a rest and will fill you in on my Monday session.

As I didn’t take any pain killers or anything the pain in my lower back got quite bad as you can’t use a pillow. I was very grateful when we finished, as when combined with the tight mask it was quite uncomfortable I won’t lie. With taking out Tuesday’s massive bed rest and taking the few days with some Tylenol I think I will be fine. Threw in some real radiation to help me sleep and that heat will do the trick I think!

What I ate was: green water Drink (green+ it gives good clean energy I hear), a banana, a pack of raisins, and half a cup of peanuts. It was rushed, as it was just to get me in gear. Today the plan is: large banana, bag of granola with cranberries, blueberries etc. (dried), a granola bar, two green drinks. After I will have two granola bars, some pineapple sticks, one of the green drinks (I wrote that wrong..). I will switch in fresh sandwiches and such. I didn’t talk to my dietitian ye, so I’ll write an article on the best food. Also I need to see how I react with the spinal as it comes out my stomach. No nausea.

 

I just read this article and realize I wrote some paragraphs that never saved. I’m not sure where I was going with this anymore. I have covered that it was more stressful than even the next day that had radiation, and my diet plan. Tomorrow I will actually eat that plan so read on from there. Sorry if I said more!

My revision history shows I never actually typed anything.

 

 

Old Research-Adult Medullo Information.

 Posted by Ryan A. Lewis on January 8, 2011

This was an article from 22 July 2008, about the “characteristics and outcomes of medulloblastoma in Adults”. I think the statistics shed a better light on my personal area than many others, and thought I’d share with you. Statistics are just that of course, but still, there are a lot floating around. The article is on a pay site so I added the exert.

Here is the article abstract copied, and the link is http//:onlinelibrary.wiley.com/doi/10.1002/pbc.21588/abstract

 

Abstract

Background

Adult medulloblastoma is a rare disease for which there is no internationally accepted standard of care. Treatment regimens have typically been modeled after pediatric protocols. We sought to review the presentation, management and outcome of patients with adult medulloblastoma treated at the McGill University teaching hospital over the past 18 years.

 

Methods.

Medical records were reviewed to gather demographic and clinical data including presenting symptoms tumor characteristics, management, survival and treatment toxicity.

 

Results

Twenty-five patients were identified. Eleven patients were female and 14 were male. The median age at diagnosis was 30 (range 17-480). Our 5 and 10 year overall survival (OS) rate were 78% and 30% respectively. Median OS was 108 months and median progression-free survival times were 63 months. Age, sex, risk stage, extent of research, chemotherapy and time between surgery and adjutant therapy did not significantly influence survival outcomes. The most frequently reported adverse events include sensory neuropathy, nausea, vomiting, febrile neutropenia and radiation dermatitis.

 

Conclusion

Adult medulloblastoma has distinct characteristics from the pediatric population including presentation in the lateral cerebellar hemispheres. Late relapses, especially in the posterior fossa are a significant problem. Further follow-up will be required to ascertain the effect of adjutant chemotherapy on survival. 

 

New medulloblastoma research, what’s going on at the NCI, the origins of GBM plus trials and industry news

Posted by Clinton Lewis on January 8, 2011

Latest news categories

25 July 2020

New medulloblastoma research, what’s going on at the NCI, the origins of GBM plus trials and industry news (braintumourresearch.org)

 

Medulloblastoma.

The gene is OTX2 and it acts like a control switch but researchers have discovered that this control switch is dysfunctional, and it keeps the cancer stem cells in a permanently ‘on’ position so that the OTX2 gene is perpetually fuelling the medulloblastoma.

Researchers then mimicked the effects of decreasing OTX2 with drugs and found targeting this pathway and silencing the OTX2 gene dramatically decreased tumour growth.

One study scientist commented, “Understanding how control switches like OTX2 help make medulloblastomas grow offers fresh opportunities to target Group 3 medulloblastoma, prevent progression and spread and decrease the toxicity of therapy for children with this devastating disease. “In clinical trials news, the first patient has been dosed and continues on therapy in a trial assessing bemcentinib in recurrent glioblastoma.

The study will enroll up to 20 recurrent GBM patients, at up to 15 sites in the USA. 10 patients will be treated prior to surgery and 10 patients will have no pre-surgical treatment. However, all patients will receive treatment with bemcentinib following surgery.

The endpoints (the outcomes to be reported on) of the study include an evaluation of bemcentinib’s ability to cross the blood-brain barrier, AXL expression (Increased expression of AXL is significantly linked with poor prognosis in GBM patients), pharmacokinetics (what the body does to the drug), safety and tolerability, as well as efficacy assessments including progression-free survival and overall survival.

This trial is funded by the NCI and last year I had the huge honour of visiting the NCI Neuro-Oncology Branch at the National Institutes of Health (NIH) in Bethesda, Maryland. Here are recent updates on some of the work they are currently undertaking as reported on their Twitter account (@NIHBrainTumor) this week;  Immunotherapy in CNS cancers: the role of immune cell trafficking, MGMT Status as a Clinical Biomarker in Glioblastoma & How Glioblastoma cells can undergo exploratory adaptation to survive and cause recurrence

Industry news now  as the  first patient is enrolled in Novocure’s EF-33 Phase 2 Pilot Trial of Tumour Treating Fields delivered utilizing high-intensity transducer arrays

More medulloblastoma news as Brazilian researchers demonstrate the potential of leukaemia drug, arsenic trioxide, to treat medulloblastoma. There were promising results not only in terms of cell death but also making the tumour cells more sensitive to radiation therapy.

Finally this week  Glioblastoma – does this malign cancer originate from a pool of stem cells that can be a significant distance away from the resulting tumours?  

Unlike many cancers, which start out as low-grade tumours that are more treatable when they’re caught at an early stage, most glioblastomas are almost universally discovered as high-grade and aggressive lesions that are difficult to treat with the currently available interventions (mainly surgery, radiation and chemotherapy).

Sadly, once a GBM patient has neurological symptoms like headache, nausea, and vomiting, the tumour is already at an end state, and disease progression is often very rapid. We know that the earlier you catch and treat cancers, the better the prognosis will be, but with GBM there’s no way to catch the disease early.

However, this recent research in glioblastoma patients shows that the subventricular zone (SVZ) — an area that is the largest source of stem cells in the adult brain — contains cells with cancer-driving mutations that are shared with tumours found in other often far-distant brain regions.

Click on the hyperlink above to find out more about this fascinating research but there is no doubt that the more we learn about glioblastoma the more hope we can give to these patients who currently have few effective options.

That is why we fund GBM research at The Brain Tumour Research Centre at Queen Mary University of London (QMUL) led by the inspirational Professor Silvia Marino.

 

 

Radiology 2.

Posted by Ryan A. Lewis on January 10, 2011

 

 

 This will probably be my last daily Radio shout-out. This time it went smoother on the alignment, slower on the actual radio. And the nurse who helped me out wasn’t the team, so it was slower as he didn’t grab anything and I took a while to get up. Not having a bolster kept my feet from going numb, and my hands were more comfortable. All in all the comfort was higher and I took one Tylenol first while I will avoid next time. My radiology appointment sheet was missing days (thanks to Caroline for noticing) which was explained because they are servicing the machine that day (Thursday 13^th0 in will be on February 10^th. Still leaving 30 sessions and M-F for the rest. I’ll be there on my wife’s birthday and Valentine’s Day of course!

 

My diet was not too much, just water and Shreddies, but I did have a foot long sandwich and fruit after. I also kept pretty tight on smoothies and such as the day wore on. My appetite waned since I have decreased the steroids from 16mg to 4mg. This past week on 4mg I have noticed a massive decrease in symptoms.

 

I wanted to point out sweat pants are great for spinal, with no metal you just have your top of. Keep that in mind!  I did have a slight headache today, but we did a lot and I could have been drinking more water I’m going to avoid late night computer or anything as that always gave, me slight headaches or eyestrain naturally.

 

Mentioning eye-strain the last thing is that lazy eye. I booked an appointment for Thursday at the optometrist. They said an eye test is a good idea as they can make an assessment, and there may be little to do as it can change cover time. That I have heard, but can understand. They said there are spheres you can get, but if they change could get expensive. I’ll have to research time. The other thing I have heard from doctors and people alike is the eye muscle surgery, which would be done as a last resort in 6 months. We’ll see what the optometrist says as the eye patch does cause eye strain when you are not used to using one eye to focus.

 

In case I never mentioned it, the non-patched eye goes lazy to the nose after my stomach down surgery which was a possible symptom, yet the other eye will go lazy if I switch patches. I basically have double vision in a circle in my middle vision from it.

 

The Support of Friends

Posted by Ryan A. Lewis on January 11, 2011

         

 It is absolutely important to have support system during this and my families have been there for me 100% and I appreciate all of it. Yet I was thinking about people who have no friends (or family…yikes) to support them. I wanted to point out a few things over my treatment that you may not know.

When I was in hospital all my friends and colleagues visited or sent a note or contacted me. There were so many I can’t even contemplate. Friends came from all over Canada, one of my friends from the drill rigs and came and handed me a Frosty (thanks Bryson!). They all did, it was so very special and shows what kind of friends and support can mean in a hard time. I was in bed at Foothills hardly able to move.

I always thought it wasn’t so important, but now I realize just how important it is to the patient. I thank you all. I must have done something right to get the group of friends I now enjoy, and now I mean my personal friends I either had when  I immigrated or grew up to learn about that immigrant!

They all came to help or just show up. After treatment I met with them and they asked how I was. And I mean the families of friends and friends of my friends, everyone. Really it’s very special not to sound like I am so special, they are the special ones. I just guess I realize the commitment now more than I user to and wanted to write it down so they know as well. It takes someone special to have that kind of compassion for someone.

And now I think about the group of friends who stuck with each other through thick and thin for over 15 years and how they will continue through all the changes and crap that hits our lives. We will change, I mean I have a wife and two kids and I still keep in touch. Sometimes I don’t hear from someone or don’t call them for a year and when we meet it’s all laughs and like it was yesterday when we last met. That is true friendship that will last forever between us regardless if I’m here or not. If I make a mistake and hurt the friendship or not it’s about the experience and love we shared.

A good example is one of my friends that I spent yesterday with every summer, years ago. He’s going through some things right now and I know he would be here but is tough. His dad and brother came and saw me and his sister asks about me all the time on Facebook. I know all about their family but we don’t meet. It’s that kind of partnership that is important. I know he cares and is worried and I know he is getting told everything is doing fine.

My brother has the same connection with old friends (I don’t know how we got so lucky as immigrants) and his group I know and my group knows his. One of his friends came from BC to be with his dad who was in the same fight and came and saw me in hospital. That was so great. What a connection for us. He climbed through a tough time like my friend above so I know it will happen for my friend too if he wants.

Anyways I don’t want to gone forever as some things are always best left unsaid and to be fair I was king of that. Yet my friends, family and colleagues have been so supportive let this be a big thank you and appreciation from me to them. I love you all.

 

 

 

 

Radiology 3.

Posted by Ryan A. Lewis on January 12, 2011

   

I was reading my radiology category realizing I had the right amount of 13, but that included my mock treatment. I never wrote a daily 3 as I had quoted in daily 2 the following:

This will probably be my last daily Radio shout-out

Really these days were not being written as a pure diary concept. I tried to explain the exact factors and tips that I saw such as my diet. Now everything is so in place that really I just comment on longer days and the overall concept of radio and the patient/staff.

I remember #3 going smoothly and it is the transition and learning stage. So to be consistent here is the post.

 

 

 

 

Lumbar Test Results

Posted by Ryan A. Lewis on January 13, 2011

I received lots of information from my radiology doctor and realized I would need to break them up for ease of reading. The lumbar results which tested my spinal fluid, or more importantly the CSF (cerebral spinal fluid) was returned. It took a while as it appears the type of testing was sent around before what I believe a microbiology test was returned. My doctor explained that malignant cells were indeed found in the fluid showing that cancer cells are apparent.

This was not an unexpected result and that was why it was tested. I said it was good news as now the radiology on my spine was warranted as my MRI had already shown no cancerous tumors outside of the initial site. He said no this was neither good news or bad news which of course is right. It still means there are cancerous cells in my body. He said the radiology plan still continues and would either way with negative results as there is no definite “cure”. The good news is that the radiology on the spine 100% eradication so that cancerous matter will be gone after treatment.

         

He also said that my cerebellum radiology removal percentage was 75% which is better than before which I believe was 705. The mass removal was very successful as usually a small piece would be left but in this case the only ridges appeared to be from the veins/tumor region. I meet with my surgeon on Tuesday and will discuss these results with her as well.

Now really the only thing I do worry about is remission.

 

 

          

Radiology 4. Recent Knowledge and Tips.

Posted by Ryan A. Lewis on January 13, 2011

Remember I’m not a doctor and everything I write is my personal experience.

Just wanted to point out that I found it wasn’t so much what I was eating, but gas and bloating I think was as a result of the radio. Once I laid down and rested the bloating went away and I felt much better. It also gave me a false full feeling which I think if left unchecked would be a tired problem much like yesterday.

Also sweatpants are great as you can just disrobe your top for a spinal/ head radiotherapy. Makes for changing and getting ready easier ion everyone.

The fertility dye showed about 1% chance of infertility with the radiation barely getting close to that area. The other problem is hormonal change which again would not be affected.

This doesn’t mean the sperm bank was a bad idea; in fact the doctor thought it was a great idea. It is especially easy as a male of course when compared to eggs from a female something to keep in mind.

Contraception id=s key during radiology as there is always a chance of mutation to a single sperm. With regards to a women’s egg and abdominal would also be a huge risk. The sperm risk is again dependent and low but there never-the-less.

 

 

 

 

Eye Doubles.

Posted by Ryan A. Lewis on January 13, 2011

 

 The final thing was I visited the optometrist about my double vision in my eyes since the prone brain surgery.

Meaning laying on my stomach under anesthetic. It was known that I may lose control in a muscle or have eye difficulty but it is not often better. The doctor found that it was -28 prism difference which is huge. The next step is a referral and talking about special lenses, if it will get better on its own, surgical treatment etc.

I can say it is extremely frustrating as I use my eyes a lot and not being able to watch TV without a patch is frustrating. The prisms seem to be more for a minor change and as my lazy eye can move and switch it doesn’t seem like a great alternative. The temporary lenses could be an option on my glasses. The surgery a long distance option. And finally training to make my current situation better perhaps the best alternative.

The real solution will then come when I complete my appointment with the referral which will be coming.

 

 

 

Radiology 5.

Posted by Ryan A. Lewis on January 14, 2011

I found out something strange Friday. The blue strobe light and sulfur smell during my head section is not reality. They assured me and Stephanie did on Thursday that there is no preliminary blue strobe it is my brain reacting to the radiation. This seem like a road to insanity to explore (real, perception, brain stimulus).

So forget that. It really shows as my doctor mentioned radio is light surgery. There is indeed swelling and manipulation to the brain and mine is in a key function area. In fact a lot there is autonomous.

Besides that my mum took me and it went quick and well. Just took a while to get me straight. The computer rebooted, I thought it funny being in IT management. A computer reboot causing productivity problems, never heard of it!

 

 

Radiology 6.

Posted by Ryan A. Lewis on January 17, 2011

Today was a nice quick session of radio. The alignment was fast as I sat down straight, settled well and they began. I was hoping not to see that “blue strobe” but sure enough it came half way through my head section! Truly is activating some weird areas in my brain. Not sure what I mean, look at the other radio posts learned that these things are not real but happen via my brains activation to the radiation.

I’m not sure if I mentioned before but I rise about 6 feet plus in the air while the arm rotates my body during the spinal session. I t must be quite the interactive show, but I would never want to imagine it.  Tron mesh masks, lying on a table, floating on it 6 feet in the air, with a blue arm rotating, green flashing lights. Awesome video! Not.

 

I have a great picture from the blackberry of the machine. It’s quite amazing and blue! Hope it helps you see/realize the room and situation. I take a wheel chair in with me so that I am prepared for tiredness and I find it really helpful in confidence of going home.

Everything went quite well, and I wasn’t tired. I am not eating about 1and 1/2 hours before, but I had a nasty carrot juice from Jugo juice either showed I’m not enjoying vegetables or was just no good.  Think I need more fruit and vegetables in me before drinks to enjoy the taste.

We had prior appointments so I couldn’t have my usual homemade drink! That is the best. And to avoid bloating no matter how much you want follow this rule! I eat after, much better. Before is for some fruit and energy and after the same if you can.

That’s all folks

 

Radiology 7 and Surgeon Meeting.

Posted by Ryan A. Lewis on January 18, 2011

 

                              

I met with my surgeon from the initial surgery on November 24^th today, Clare Gallagher. We basically just covered that the surgery went well and the scar has healed nicely. We did briefly talk about the eye issue, and that there is a neuro specialist that could look at the link between brain and eye and how it has been affected.

Really the point here is if a more drastic step will be needed in a few months. It is too early for anyone to know if it it will get 100% better, but as time goes by I think either side will shrink (recovery or lack thereof). Just so you know the reason it is important to me personally is I like to relax and watch a show, game or movie. That is affected when you have to wear a patch in regards to strain, learning and no 3D movies!

The radiology went well but we had to use a different machine (not being blue) and a different room. It felt different and took a while for my body to flatten and relax on the same table they brought over! Once I did I aligned quickly, the radiology itself seemed longer. Still see the blue strobe and smelt sulfur despite trying to fight it, not breathing in the smell is still apparent.

 

 

 

Radiology 8.

Posted by Ryan A. Lewis on January 19, 2011

                                                                           

 I completed my 8^th radiology today, however the machine was taking a long time so we were told it would be in another room by one of the technicians. As someone was late, that was fine but it seemed a lot of time had passed, while in reality, from end to end we were supposed to start at 1.40pm and I was done before 3pm despite the process already being presumed to take longer beforehand (measurements on the table).

We were not with big blue at #10 again! We went to Unit 2, some ways down the hall. WE went with the technician I had in treatment #2 or so, who told me about the side effects in a meeting. He mentioned the ceiling was nice, and sure enough it had a very vibrant green tree with colored tiles that were lit up. Although the masks makes it virtually impossible to see, something that should be in all rooms.

 

The smaller rooms make for more comfort, but unfamiliarity. This time they moved the spinal beam closer to my brain beam by 1 cm I believe,. So the time took longer. The alignment and such probably accounted for a large portion, and they needed someone to look at something on the screen they told me which took time. I thought the radio portion was longer but who knows. Total time was about 40 minutes.

 

I was told that these changes of 1 cm will happen a few other times, so asked when the next one was which is scheduled for January 27^th. The wait was very bad, as I was already waiting in a wheelchair with movement and by the time the season was over I was very happy. My butt was in pain like sciatica! I will be bringing a Tylenol or two for those sessions when I will be laid up for over 30 minutes. Will help me keep still although I hate pain killers.

 

Tomorrow is only a session, no late appointments. We went to the mother-in-law’s for a while today, and was great but tiring! I’m up late because I didn’t take my Decadron so I’m paying for it by writing this blog for you at 2am. All the best.

 

 

Radiology 9.

Posted by Ryan A. Lewis on January 20, 2011

 

                          

Today was the ninth Radiology session. We were able to use the regular room and the alignment and scans went quite fast. We were running so close I wheel-chaired myself in while Steph parked. As I didn’t get much sleep it was very tiring. WEW also had a meeting with the doctor which took an hour wait time so the end to end was about 2.5 hours. While tired this is a long haul!

I went to a music shop after to rent some stuff for fun at home and a coffee badly even though I don’t drink them! It all builds up especially if your adding radio on, so be careful.

WE discussed the redness on head and how I am getting more dry skin and my hair feels like I worn a hat all day. They said it would be rare having such symptoms now but as I am receiving a full spinal and head treatment the tiredness can be expected as well as the rash.

I look at it we‘ve had -30 degree day, snow and wind; I have dry pale English skin and radio hitting it daily. It’s hardly surprising but I remember them talking about Polysporin. They said don’t use as it’s an anti-biotic and that can act as an oil and increase the problem. I’ve \only used it before and showered after’ not for the treatment. They said use the cream provided for dry skin (I use it on my spine) and that will help and be safer.

 

 

Radiology 10-Milestone Day: 10^th Radio.

Head Shave Event CNRL.

Posted by Ryan A. Lewis on January 21, 2011

   

Friday, January 21^st was a milestone day; I finished my 10^th Radiology which is now 1/3^rd done. Fridays seem to take longer to align and one of the technicians will be away next week. I was in a different room again which seems to be happening a bit. They mentioned their $3M machines and they need servicing! The “strobe“ blinked lots today not sure what my activation is doing!

The next time they move the 1cm close from spinal to brain scan will be January 27^th so I will be taking Tylenol as the long lay downs are really hard on my lower back, take note! I did almost fall asleep on Wednesday as I was so tired but it’s not really doable for me.

So Monday will be the start of my 11^th and on the 20^th session it will increase in strength and focus on my skull and no more spine. That is the next step in regards to my radio treatments I am feeling the tiredness but this week was especially busy for days and nights so we’ll see what for next week. This weekend is relatively free and kids are being taken care of by grandparents so that will give me some rest.

The Head Shave  Event at my work (CNRL) was a success and everyone said it was great. I was in my session when they were getting shaved so it was appropriate in that way! Lots of people showed up but when I see some pictures I’ll write the separate blog it deserves.

I am very proud of this event and shows how much my friends and colleagues support both b myself and the cancer effort. If you can work with such people and have such friends it will make the fight so much easier and show just how important our relationships are.

 

 

Radiology 11.

Posted by Ryan A. Lewis on January 24, 2011

     

Today radiology went well. I hadn’t shaved my head but had gone to the psychologist. I drank a coffee as I was getting tired. The setup platform was not aligned and when I laid down my head was not right either. The platform came from getting a frontal headache it was quite painful and lasted about 2 minutes.

I hoped when I straightened it would go away but it took a while. After wriggling a while it was still there. That is when they came in and got me to get up to readjust the pad. After that the second sit down was great. I relaxed right away and was aligned. The 10 minutes of misalignment before was gone and we started.

They asked me if I wanted to talk to the nurse and I presume they’ll bring it up in my exam on Thursday. I believe it’s because they don’t help me lower down. So I lowered too quickly and blood rushed out of my head and gave me a headache. I don’t get “real” headaches but that was as much as I can think. I hadn’t drunk much water and I am tall and went down fast.

I’m going to ask for a hand to lower slowly into the mask from now on. That’s the other part as this was before I was even masked so I know it’s not from the treatment period.

 

 

 

 

Lewis Head Shave

Posted by Ryan A. Lewis on January 25, 2011

Hair Falling Out

Today my hair was falling out more than usual and the cream removed a lot in the morning. So I told Stephanie we’d have to have to shave it and she made and she made the decision to shave when we got home. I was worried about the radiology making it sore but it went well. It was much shorter than it felt when we were done. I look like a Buddha (Steph says minus the long ears).

Losing of my hair was more traumatizing the than I was expecting. I think watching the kids and that made it worse and it falling out in the shower when I hoped it might stay. Yet now that it’s done it’s just a haircut and my family does not care.

It is ironic that my work did a head shave on Friday and it is gone on Monday. That is the way of things sometimes.

I leave you with this quote:

“A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty”-

Winston Churchill.

 

 

 

Radiology 12.

Posted by Ryan A. Lewis on January 25, 2011

 

Today was the twelfth radiology treatment. I didn’t get a headache lying down as I asked for a hand. I told them I take Tylenol on the centimeter change days due to the longer switch and that my doctor recommended 2 over 1 pills. That was all the questions as they check how I am each day.

They were 40 minutes late for my 12.20 appointment and didn’t know. I told them sitting in the wheelchair for 40 minutes then going on the hard table does suck when my treatments are usually 40 minutes. It makes for a long day but I’m able to rest now that I am eating before and the diet is sorted etc.

This was my first appointment with a shaved head, the hallways were chilly! Smooth in the custom head gear I guess. The alignment really also directs the x-ray scans which now I think takes a while because if the alignment is out they have to come do minor adjustments. From what I hear they mark me and line up the lights to the marks.

Finally when I was leaving I was pushed up to a change room, parked and wobbled in. Sometimes there are clothes on the chair, very rarely but I changed quickly. I was texting Steph, I was done when a lady outside said “My clothes are there” or something and I said “oh yes, well I’m done, but you can grab them. The rooms are full” She said “oh this other one is free now”, as if I should go.

I opened the curtain for her and she looked around at my stuff as I texted. I said “That’s why I bring my clothes with me so it’s free to others” and she said “Oh I’ll grab them” and left. I waddled to the chair and pushed myself out to meet Steph.

I’m not sure if there are signs saying to not leave clothes in the limited rooms but that was a strange conversation for a young guy who changes quickly to an older lady who had to wait 20 seconds. She was like only in her fifties and walking fine…She wanted me to leave presumably naked to another room so she could change in her room. I am young but I do long sessions. She has her hair and presume is quick for all that. I know I’m sounding over the top but really It was a weird thing to suit outside and ask!

I could have ranted longer but maybe a “Take your clothes, we’re limited” sign is needed for some.

 

 

 

 

Psychology Appointment.

Posted by Ryan A. Lewis on January 25, 2011

I had my first South Calgary Psychology Appointment today and it was good. The doctor was helpful talking and explaining the differences. Really there is the point of accepting what is done and the new life after surgery when dealing with the brain. There is no guarantee neurons will remain connected and even though there are new s made even in older adults much is reconnection or relearning new behaviors or even hobbies.

I told him things like poetry and literature were a concern, losing something you worked hard at. He said the altered brain can bring new hobbies and learning you didn’t know. He himself had recovered from surgery and we spoke about that and the relearning and that led to talking about anxiety regards to healing.

 

It’s hard with things like remission not to think a headache is related to the tumor growing back. I can see after when radiation is done being the same as there is no 100% removal of cancer, only tests to deny or confirm infection after the fact. He explained he went through the same kind of health questions or heard a siren and thought of the same thing. He is a calm individual but during that period was heightened.

 

We talked about the “fight or flight” mode of our neurology. How it worked great for cavemen fighting a sabre tooth tiger that was bigger and stronger and need to use their smarts to stay alive. Now our threats have changed.

Someone can maintain a response as they say they worry to lose their job or get an illness.so the state is keeping them in a heightened responsive and ultimately stressful mode. I thought this very informative and really makes sense why people grab medication to solve these issues than look at the problem. I am getting that anxiety and he mentioned that taking deep breaths gears the symptom to tell your body no threat is around (it’s para-symptomatic of some kind). The deep breathing or  diaphragming breathing makes sense.

I’ve always been a blog supporter of now living and deep breathing and relaxing and it’s time to work with someone and get better at it. I have rambled on but covered the large topics I would like to share. I found talking to a neutral was extremely helpful and got lucky, he has the experience in both recovery and is specialized in the brain and healing. He even spoke of the neuro-ophthalmologist and what they could help with in regards to my eyes which just showed the depth of knowledge and help I can get.

 

 

 

CNRL Head Shave from Jan 21, 2011 (The Milestone Post Back)

Posted by Ryan A. Lewis on January 25, 2011

Here are some of the pictures my parents sent my way from the event on Friday 21^st January. You can check out the blog entry I posted then for Friday. I was in radiotherapy while they were at my work. It looks like a great event and they had about 45-50 people show up. They raised $25k for cancer which is a great effort by everyone involved. As per my last entry I was shaving my head on Monday, January 24^th as my hair had begun to come out from treatment. My wife finished so I look like those guys now. A little round from my food perhaps!

 

     

    My manager Carlos Garcia 1               Steve Sucha the VP of IS at CNRL 

 

 

 

Radiology 13.

Posted by Ryan A. Lewis on January 26, 2011

 

So the 13^th session, which is supposed to an unlucky number, went well today. They said it would take a little longer as they would do another scan. They had the wrong foam pad for lying down on, which I didn’t know was also custom but made less sense as the foam head wrap was way too high and my head didn’t fit.

After we got that sorted I rested well and the session went quickly. The arm was still swinging when she took the mask off, so all went well and I was out in about 35 minutes I think. This was my second session with the shaved head and one of the technicians was surprised to see me when she wheeled me in and I was lucky I mentioned it or she probably wouldn’t have thought it was me!

The front of my stubble is coming out, probably not helped by me rubbing it like a fuzzy peach. I told Steph my hairline will be really weird over the next while.

Tomorrow will be an exam session with my doctor. The only thing I really have to discuss is the throat/ swallowing ids hurting and has become a painful and I can only eat soft foods. I think the bread eating at East Side Marios caused it but there is correlation with swallowing and radio so I have to ask. It has been a full week since it started and has actually got worse, but I am now being more diligent with eating habits and soup etc.

Finally it’s the 27^th so that means that a 1cm change to the spinal to head ratio will be done then a longer session. I will take 2 Tylenol as per my doctor’s request for a longer lay. Soon I will hit session 20 and the change will be higher dosage but no more spinal.

 

 

Radiology 14, Thrush (Candidiasis), Birthdays.

Posted by Ryan A. Lewis on January 27, 2011

Just wanted to post before bed via the charged phone! Radiology went well even with more adjustments. Now Tylenol has been needed as it was quick but you never know. Fridays tend to take a little longer, so we’ll see.

Birthdays

It’s Stephanie’s 27^th birthday tomorrow, so we’ll be busy jetting around after! Should be a good change to the radio therapy in the morning (it’s 11.20 tomorrow).

Exam and Radio 14.

I saw Dr. Nordal today for my exam and it was a quick visit about 10 minutes, even though we were early compared to last week’s 45 minute wait. And on time last waiting room arrival too it was great. Yet by fear the best news is that it was an informative meeting.

First I had to let him know the Decadron taper was Jan 31^st not the 27^th. Second I was getting a red rash and itch from the therapy as asked, and they recommended the creams they gave me. This is expected from spinal/cranium, from radio waves/beams by the way. Of course my hair fell out and explained the shaving! And we finished about my eyes and neuro-ophthalmologists.

Thrush.

In there I told him about my throat and swallowing and tipped it to bad eating habits (see: East Side Marios bread). He said they could be guilty for that pain a la radio side effects. He took a look at my throat and I “awed” and he said “Yes” there was white residue on my throat. What this meant to him professionally was that it was oral thrush, i.e. a throat infection. I’m so happy he checked as he prescribed anti-fungal {name when I have it) so all should clear up soon and can eat properly and swallow again! They believe The Decadron drug being gluco)(sugar or yeast) and immune-suppressant it opened me up for infection. Seems this can be an issue if left unchecked, re..Spreading.

Well before I leave that drug Decadron, on Monday, it has got one more of the final side effects! Immune. To be fair the long term sore-throat was likely the tube on throat for 11 hours coupled with eating 9 times a day and other factors in December. I doubt my immune system beat thrush during hospital stay and all that!

 

 

 

Radiology 15-Half-way.

Posted by Ryan A. Lewis on January 28, 2011

 

Just sitting outside in the waiting room for my 15^th session, that is 15/30. I’ve reedited the post now at home. As I took codeine this session for the thrush I have contracted, and knowing we’d be out for the day celebrating Stephanie’s birthday, the radio session ended up being soft and quick. They were going to do another x-ray scan as I was so straight at the end but the machine played up do we’ll do that Monday.

My throat now feels better, but could be codeine rather than the anti-fungal meds! We’re leaving now to do the birthday routine with Stephanie. Note: As the night went on the food at Red Lobster was OK as the lobster wasn’t hard on my throat, but I tried soft pizza at the movie and that was harsh. Found the ice-cream still the best.

I do feel privileged to be reaching milestones like this, and my wife’s 27^th birthday is one of those. Half-way points themselves are funny for the half-full/half-empty, you look forward and each day is closer to being done, but look back and you think I’ve done all that, now double it! Looking back never helped anyone, that’s why it’s called the past.

As the weekend comes, I’m feeling great. Others have had thrush from treatments, and it’s just another silly thing when you’re dealing with worse. I wish it wasn’t interfering with precious eating, seriously. Keep in mind you should tell your doctor immediately, as thrush or yeast can spread to integral parts (lung) of your body, and may not heal properly due=e to immunology deficiency.

 

 

Next Week

Posted by Ryan A. Lewis on January 31, 2011

Final half of radiotherapy.

I wanted to post an entry before bed for next week. Next week I start the final half of radiotherapy; it starts early all days 9before 12 or so). Each weekend I wake up thinking I have to get u for radio! The showers are more something to look forward to without the hair, but the rash is getting annoying as it is itchy so the cream is important. I totally regard doing the precautions ahead of time as integral.

The same goes with talking about any symptoms or sickness during treatments that might crop up, as any help is important. The thrush has been a problem for eating over the weekend as well. Still leaving me to eat what I don’t want. A lot of frozen yogurts, popsicles, cold snacks, soft fruits etc. but I really want to eat some cookies and things like that so they fit in but give me bad heartburn and pain. That really sucks when I could have been treating on it Tuesday and perhaps been over it or close by today.

Tiring

The final thing is I had a conversation with many people about being tired. Putting my energy and lying down first over conversations, visits, unnecessary appointments etc. When I’ve done a day of radiotherapy which if you’ve done is very tiring as it’s like surgery. Then our family appointments like groceries, Toyota for a scratch or perhaps picking up a snack, driving home our trip to Tom Baker and back is 3 hours on a fast treatment. Perhaps a medical appointment like physio, psychology, occupational health, then eating lunch or dinner, picking up kids, playing with kids, being a dad and husband at home which I want to do., relaxing and relaxation, TV, having colleagues, friends and family which I want/need for visits. This leaves me very tired from an7-8am wake up to a 10-2am sleep. The drugs kept me awake until 3am or so many many nights and still do.

In the end this is going to leave you tired, I’m 27 and young and get tired. I love visiting people, but things happen. I want to see my family every day, but my calendar is like a revolving lock and changes and modifies. They just make appointments with me as it is easier and I lock them in, Stephanie is also a key to it all.

Things pop up like you have to go to the doctors with your 3 year old as he has an infection and leave your loved one, then go home at 10pm and still have things to do. That happened to us and is life. You may not have kids, but have obligations! Some people don’t even have those, and I don’t know what is worse, in the end priority is important, you feeling rested or content when you’re done. I know I’m putting the right things first more often now and feel great over the recovery for that I do have to tell myself lots however that the visit isn’t important. I need to rest! Make sure you do the same!

 

 

 

Radiology 16.

Posted by Ryan A. Lewis on January 31, 2011

Radiology 16 went well I was straight and they were able to do everything in 30 minutes! I let them know about the horrible heartburn that kept me up all night. They recommended sitting up and taking Maalox and a few other things but no new medication. It was basically use the the ranitidine which is 24 hours later and the fluconozole should be helping.

We’ll see how it goes, I’m about to have some Weetabix and I have Maalox pills next to the bed. In will sit-up on the arced pillow for sleep as well. I hope all goes well. I was eating tums like candy and I think it affected me in the bathroom and have to talk about other things with the nurse tomorrow.

Other than that it went well, eating is becoming hard and bothersome as I can’t eat like I used to and pureed food of ice type food is the staple. Once I’m off Decadron (today) the healing may very well begin. I went with my brother Dylan to Redwater and had great food for tonight. So that was great.

 

Decadron officially gone

Posted by Ryan A. Lewis on February 1, 2011

I just finished my last batch of 2mg Decadron at 5pm, it was great. Now I hope to get rid of some of the lesser side effects and figure out what side effects are from the new medication (fluconazole, over-the-counter) and the surgery or radiology. I hope irritation goes down, rash, insomnia and auto-immune as it relates to healing cuts, bruises and infection.

Appetite cam stay if eating gets better! Not like I need to lose weight right away. I’m at 185 lbs. which is still under my weight before this happened when I was much more distributed and health, yet high enough that radio isn’t touching my weight. The lack of nausea helps and it will be off my stomach/spinal area as of 4 more sessions.

That is when the focus will be on my cerebral area and the higher dosage will come in. Anyways as far as Decadron goes the taper is now complete at January 31st. I’ll fill you in on any changes in behavior or physical wise.

The big hope is really my auto-immune is raised so I fight off and heal my sore throat. Then I can eat again and be a bit more responsible at it as the radio will also taper off. Of course we could find out that the radio is the root cause of woe!

 

 

Manchester United Letter.

Posted by Ryan A. Lewis on February 1, 2011

 

Just a quick aside before I add it to my ManU blog. My parents got a letter from Manchester and when I read it the letter was personalizes from Sir Alex Ferguson, Manchester United manager.

Diane Standen, wife of my mum’s friend Rob, had let ManU know of my situation (unknown to me, thanks Diane). In a nice letter Saying the players and staff were thinking of me during recovery. Sir Alex signed a typed letter offering their thoughts and hope.

It just goes to show what a club that place really is and no matter how big they are or insignificant our cause my feeling is there are great people at ManU who care.

Thanks United and Sir Alex. It’ll get scanned and the reward it deserves. Yet you would like to know the relationship between fan and fight I’m sure.

 

 

 

Radiology 17

Posted by Ryan A. Lewis on February 1, 2011

The session was quick today, but I had to talk to my nurse about the heartburn and blood. Without too much detail the heartburn did not reduce after switching to Maalox over Tums, or using the arched pillow all night. I had fibre Shreddies and 2 hours later at 3am it was brutal heartburn. Nothing helped. I took the ranitidine and after 30 minutes that did help. So that is the plan for tonight and I’m not eating that late. As now I’m off Decadron I’m not worried I’ll be kept awake at 1.00am!

I took some blood tests to make sure the blood in the stool water isn’t related to an infection. We believe it’s related to codeine and stool hardening etc. so to not be too disgusting for you but relevant. I’ll let you know the blood results when my nurse calls or does not.

 

 

 

Radiology 18

Posted by Ryan A. Lewis on February 2, 2011

The therapy was very late today it was changed from 11.20 to 3.50 the latest so far.. My mum took me, and the lineup was quick but the radio seemed to not go so sequentially there was a lot of waiting which made the session lo0ng.

I had terrible pains in my joints this morning which is linked to withdrawal. My decadron taper was too drastic from 2mg to 0. I heard my doctor talking to someone saying it’s a 25%. Codeine barely helped remove the pain, it just dulled it. I took 1 mg of Decadron which removed the pain and allowed me to get out of bed after hours of being laid up (1 pm).

Hopefully tomorrow will be pain free, our session is early and Steph will take me. I still have pain in my throat but I think the thrush is clearing, my doctor will check I’m sure. The blood tests came back all good. My doctor saw me about the pain after radio. A side note is Zantec is ranitidine the medication I was on so we picked some up. That covers a pretty rough day.

Marlene came by with some great curry and we had a good chat. Made me realize how radio is building up on my body, especially with this medication issue.

 

 

 

Radiology 19

Posted by Ryan A. Lewis on February 3, 2011

We started at 11.30 or so and as I talked to my doctor yesterday He had no need for us to wait longer. So we were able to a lot done and pick up some things. The only problem is we didn’t check if the thrush has cleared up from my throat after the medication from yesterday, so I needed to ask someone to check. I am not sure, I know that I am less thirsty, and there is no way to tell as it is far in my throat.

Neck Soreness, Radio Build Up

The radiology is realty hurting my neck. I want to see if there is something medicinal that can take the pain off a little rather than cream which is like cold water. Other than that, the session went well and everyone is working diligently so it’s great that way. The meal replacements are a smart way to get some food if you don’t have time before, but never eat before 30 minutes or you get the bloating and makes it hard to eat after you need your energy for your rest (weird statement!).

It definitely is building up and I can’t wait to be at the end of it now. There’s no other way I can put it.

 

 

Medication and Radio

Posted by Ryan A. Lewis on February 4, 2011

The big things for today with my dad taking me have been I’m not on any anti-fungal medication and we didn’t check my throat yesterday to see if it has healed. Although some of the effects like dehydration are less and taste is a bit more, the pain and the heartburn from no food in the morning is there. I’m not sure it cleared up from the 7 days and I need another batch from them.

The second part is I have a perforati0on in my septum at the top of my nose. My nose has been bloody and leaking and scabbed for months. I figured it was Decadron as it makes me not heal and bleed, they said it’s common and to watch nose blowing etc. Well it looks like its damaged and made a hole as I was using a light cue tip to remove blood and I could feel it the other side. I don’t know what that is going to mean but the scabs and blood sealed a shared hole right now and it sucks.

I hope when I’m at the other side this is an easy fix or my body can heal rather than surgery. I have enough things on my mind, with my eyes and such I don’t want my nose to be another!

 

 

 

 

Radiology 20

Posted by Ryan A. Lewis on February 4, 2011

 

                 

They did mention it was the last combined one and I barely had a “Yey” and they laughed. I would have thought at radio! I would be happy to be at radio 20 but at the end of session 20 I don’t have much energy.

This also means that I am done the spinal treatments and the next weeks will be the new session based on the cranium only.

The technician who normally does my alignment was there so everything was quite quick and my nurse met us for the 5^th time at the recovery room (I never see her usually) just to go over a few things. I am not worried about the nose septum perforation as my mother has the same. I have no idea if I had it before or if it has been an ongoing thing. The dryness of Calgary has but the excessive bleeding definitely has not.

Nose, Flucanozale and Blood Tests.

I was more worried that I had broken the “seal” or something but the thrush and lack of medication was what I wanted to point out. She had thought it was a 2 week dosage but it was one. She checked my b throat and said it was not on the back but on the tongue. We got a one week prescription ad there is a chance for a re-fill if needed I am supposed to take 2 pills at a time. I was taking them split. They are quite expensive little pills to that fluconazole! Hopefully after this week it will not come back and it will be gone over the next few days.

They also requested a wide blood test as they were giving me more of the fluconazole, expecting no news is good news or my nurse will call tonight.

I’m not hopeful that the throat pain and the thrush are related. I still think the pain may be more spinal radio related. That being said I’m going into a weekend and there is no appointment due to service on Thursday which means I am only doing radio for 4/7 days next week which will give me a much needed rest. This week was rough and this weekend I am going to recuperate. WE are going swimming on Tuesday. I think that will feel great after Radio 21.

 

 

Radiology 21

Posted by Ryan A. Lewis on February 7, 2011

 

             I found the formatting tab in WordPress. I’ll go back retroactive like end of February; I don’t change my wording in posts as the transition is key to someone going through things, but headings and such makes it look better.

My brother took me today as it’s Monday. We got there on time, but I forgot the schedule sheet and told the technicians. They decided to take me in as people were late due to the weather which was great. They setup quickly just one move of the bed and put saranwrap over the foam. That was more comfortable. I had no blue strobe light so I presume that part of my brain is no longer being activated.

The most information came with my nurse. First I had a temperature on the weekend at about a100, bit of an earache, was out of breath from little work, blood in water of stool one day not the other. It was a relaxing weekend in many ways, but my health was really not good.

Radio side effect vs Side-Effect

By Sunday night I had resigned most if not all were from having a cold and radio. Especially the 100 temperature (went away), earache (which was helped using a moist cue tip, which soothed the symptoms as this was not a real infection), out of breath (just like when you have a cold/temperature and you do too much and get sweats etc.), blood in water was of course not from the cold. I also slept really long, despite the nose keeping me up as you do when you’re sick (plus bleeding as before).

Sore Neck

That gets to my neck which I guess was much worse. I am using more cream but they said to be more gentle with showers, so I will use jugged water for that part and no soap from now on. They gave me sterile pads and neck gauze so when I apply the cream it will stay on longer. Steph will help with that. I will also get this neck gauze setup applied after every radio by a nurse and have a meeting booked for tomorrow. The neck gauze is so helpful as it is constantly applying soothing cream.

The setup the nurse did

My brother’s first radiology drive.

So I leant a lot today, and I hope all is well with my blood test and will find out today/tomorrow depending on the outcome. Today was rough on Dylan too as it snowed like crazy and the kids needed Steph (they were so rambunctious and I slept late as per cold above), so he helped a lot and shoveled before we left. In also took extra-long as I found I needed long-johns, sweater etc.!

Silly Calgary dropped 8” in a few hours (and 10 degrees). Then I forgot my appointment list you drop off, and led him in the wrong direction for the blood test! I seemed more out of it after the changed cranium setup, as I told the person taking my blood my birthday was 81883. Month 18! I’m really grateful Dylan driving me, it works out great having the whole family taking me., and better family than anyone else as I can share before/after.

 

 

Radiology 22

Posted by Ryan A. Lewis on February 8, 2011

Radiology 22 went ahead, and the transfusion was cancelled. They removed the neck gauze, and I had to lay down with the raw neck which I expected to hurt more but the saran wrap, Tylenol and knowing the session would be shorter helped. The technicians helping me up and down helps as well!

Once I was done we went to the radiology resting area for the transfusion. There was debate whether to do itas my doctor wasn’t there. They called him and he said he wanted to talk to me and consent as nurses could not. Then an on-call doctor came and talked to me about the risks and they had me hooked up to an IV before testing my temperature. It was high (fever) and they decided not to proceed.

I will be doing radiology tomorrow and another blood test to see if my hemoglobin is continuing to drop. If so the transfusion will likely take place on Thursday.

 Neck Setup

There I also got my neck gauze changed, and I told the nurse when Steph removed it skin had come off up so she didn’t want to remove the cream and skin and put on a new sterile pad and the neck gauze. They said (unfortunately) that was expected as the skin was damaged and dead.

There was a student there to learn for the application so it was done awesome! They used saline to allow the cream to come off with dripping it, then new gauze pad with cream and then bandage around and taped, then we put the neck gauze over the top. The problem is the tail that goes down my spine as nothing is holding it in place. It can slide and move off the painful area. I will get Steph to put band aids horizontally onto the good skin to keep it in place while I sleep.

I’m also worried about showering so I will have to wake up early and do a quick bath.

 

 

Radiology 23

Posted by Ryan A. Lewis on February 9, 2011

Radiology number 23was dicey as they put the wrong platform and foam down which means once I was down they had to get me up and change it again. One of the technicians (I should remember her name as she was great) said that an iron bar is on that setup that stops the radiation; they have another one which is carbon fibre which allows for it.

The thing that makes getting up and down extra painful/tedious is that with the new neck gauze setup my skin is raw from the width of my neck starting where my stubbed hair is, down about 8” the center of my back. When I lean down people help me get my head down and they have saran wrap so after about 30 seconds pain subsides but it’s very uncomfortable once a mask pushes down.

The good news is the whole session is faster as the alignment although not fool-proof does move quickly and the radiation itself moves quicker as well.

 Transfusion

 

The transfusion was moved to Thursday. I took a blood test today and it shows another drop to 75. They want us to come in as soon as possible, but from what I remember Steph already told them she has to drop the kids off to pre-school, I have to get ready and we have to drive up there, I’m not going to rush around for a blood transfusion. I understand they want to give time at the end for us to leave but I’d sooner get another ride organized if Steph needs to grab the kids than make my morning horrible and tiring (when we leave). Walking up the stairs is tiring now.

I’m learning to put my foot down even with these nice nurses. They understand it was a bad mix-up yesterday but in this case it would make our life harder. Even if I’m there for 2 hours x 2 units plus setup, that means 4-5 pm leaving time. I will get someone to come pick me up or the kids when we know around the afternoon if needed.

The Adult Medulloblastoma group on Yahoo which I haven’t mentioned yet as I just joined and wasn’t sure of the quality of posts said that people have gone through transfusions while getting their 406 weeks treatments. That made me feel better.

Transfusion (A-)

Posted by Ryan A. Lewis on February 10, 2011

They cancelled the transfusion from Wednesday mainly due to my temperature. I told them it’s been rising and falling at night. Last night it was100.9 even though it showed fine at the hospital. Then this morning it was down again and we went ahead with the transfusion. It went slowly but OK. It was good as it was in the radio room as Steph could watch TV while I read the magazines and book (Alex and Me) we bought.

 

I’ve been getting my dressing for my neck/spine that is red raw from radiation. I got that done about half=way through and everything went well. It was an all day ordeal, we got there at 11.00 had some trouble with IV and my invisible veins so started at 11.45 and were done exactly at 4 pm (2 units).

 

I still feel lethargic at night after the transfusion but they said it takes days. I slept a long time and will be ready for radiology tomorrow. It was a shame to spend our one day off radio in a while for a transfusion, but that was the only choice.

 

 

 

Radiology 24

Posted by Ryan A. Lewis on February 11, 2011

 The radiology today was the fastest I’ve ever had before. Now that the spine is not treated and the foam and pad setup was finished, it was just mainly radio and comfort. When I came out I told the lady my dad was probably in the washroom or didn’t expect us out in like 15 minutes! The first was true but the lady from the radio room came out as she wanted to take the opportunity to do my gauze.

This time we did a large wrapping which I was happy with the weekend coming. They did extra padding all down the stripe of red down my spine. Last night it came loose as it was shorter. Hopefully this time all will stay well attached. Once she was done she pushed me back and my dad was there.

AS per every time my family has taken me recently there was another blood test! This time it was a blood culture mainly to test my hemoglobin and also to look into the fever climb and loss and other side effects. The culture requires a lot of blood and with my current “hard to find vein problem” I was worried. We got it in two pokes so it was fine. I also gave a urine sample.

The outcome came in a few hours by phone and my blood has a bacterial infection. They have faxed my prescription down here and Stephanie has gone to pick it up while the boys are sleeping and I’m typing. I am looking forward to getting rid of some side effects from this prescription.

 

The side effects add up. Don’t let people say “it’s like being hit by a truck”, it’s the unknown side effects. Read mine, you may get some you may get more. Yes it’s those that have been the bugger, caused by radio knocking me hard! So far the throat pain is really annoying, if relief was needed for anything it will be that.

 

 

 

Radiology 25

Posted by Ryan A. Lewis on February 14, 2011

 This appointment went smoothly, Nikki, Dylan’s girlfriend came as well. When they removed my gauze it was just the neck portion and I could keep my jersey on. That removed the “getting changed” portion. The process is always quick as usually the longest setup portion is putting my mask on. It’s not that comfortable and pinches my nose so there is a “jiggling” process!

 

The technician then pushed me down in the wheel chair to the radiology room where I had the rest removed and a new set of gauze put on. Once we were done my nurse Diane was there and we talked about my blood culture and my anti-biotics, they were for an infection that I’ve already mentioned. We also talked about another appointment Wednesday.

 

Then Dylan and Nikki came and we were able to go home. A blood check has been ordered for tomorrow for my next radiology appointment. I feel better today after the anti-biotics have been working and my body has been able to stop working on the infection. Coupled with the blood transfusion it’s hard to say what had the most help. It does feel good t have bit more energy.

 

Finally my skin from the radiology treatments is looking much better and I may be done with the gauze as of tomorrow as it has been healing well.

 

 

 

Radiology 26

Posted by Ryan A. Lewis on February 15, 2011

I am writing the radiology treatment of 26-28 after the fact. I was mainly focusing on the testing Wednesday and whether I was recovering from the other side-effects. I was getting gauze every day at the recovery room.

 

As far as the treatment itself went they were going quickly, as the spinal alignment was done with. I was able to wear a shirt and this day they cut the neck bandage so I was able to go straight in.

My energy has been OK as of Monday and had started recovering due to the transfusion and anti-biotics. Unfortunately my stomach began to feel weak and nauseous. My nurse said it can happen with anti-biotics.

My doctor recommended a colonoscopy or at least a scoping and we bought the CoLyte for preparation. It was too much for my stomach and after the 4^th cup I vomited. I did not drink anymore and the next day the test still went ahead (just some foreword).

 

 

 

 

 

Radiology 27

Posted by Ryan A. Lewis on February 16, 2011

 I am writing the radiology treatments of 26-28 after the fact. I was mainly focusing on the testing Wednesday and whether I was recovering from the other side-effects. I was getting gauze every day at the recovery room.

Today I had the colonoscopy it was after a quick radio treatment that my mum took me to. Afterwards I had another blood test and we sat and my mum stayed until 3.00 pm when my next appointment began.

The radiology was really affecting my skin but has now healed quite well. I don’t need gauze anymore. The anti-biotic is really affecting my stomach and making me feel nauseous. Right now it’s the worst side-effect of the radio treatment.

Colonoscopy

Referral

My doctor referred a colonoscopy regarding the bleeding from prior blogs. And I went at 3.00 pm after my mum pushed me to my appointment. I was very happy she stayed as we found a good spot with a comfortable chair. My tail bone has been hurting recently I think from sitting, so it felt good. (Car rides have been rough).

Appointment

When I went in I changed into robe=s and went through all the questions. My nurse tried to IV me and had the same trouble as the transfusion nurse. The man she brought over, who I presumed was their resident lucky IV poker was able to get mine after a lot of searching and good work (about 15 minutes).

Once he was done the Doctor came in (unannounced, but made sure to announce every person around him!), I told him what I thought was happening and he felt he didn’t have to a full colonoscopy. They started talking about work stuff and as the nurse put the anesthesia and other medications in my IV, about 4 syringes I was out. I woke up 4.5 hours later to another nurse saying she was calling my dad.

After I got changed my dad was there and we went home. I had to ask for the report which just said nothing found throughout the procedure. It didn’t high light why the bleeding occurred. I will talk to my doctor about it tomorrow in our appointment.

 

 

 

 

Radiology 28 and Dr. Nordal Appointment

Posted by Ryan A. Lewis on February 17, 2011

       

The appointment went well today and I was able to switch pre-school so my dad could take me. I had a doctor’s appointment scheduled after and he wouldn’t be there on Friday which is my dad’s regular day. That gave Stephanie a chance to go to a movie and she had a coupon for free so it worked out well for us all.

Dr. Nordal answered all our questions including ones about how the radiology uses ionizing to remove the slough (the old or dead cells). This is why it affects the skin, by increasing the regular cell division of skin cells. Problems with this obviously in the case of skin, the second layer is not done developing quick enough.

This is what makes sense as to how it attacks the cancer cells.

The side effects we talked about were things like a mole on my back has gone very red, it will not die or have anything like that happen, but it has been irritated. More than likely it will return to normal after a few more weeks. The skin is is the same thing and has already begun to heal.

We also talked about a scab on the top of my scar that has not healed. If it does not heal along with the neck he said to contact my surgeon. They suspect it could be a suture (staple) that was left in at surgery.

The other thing was we talked more about the antibiotic. I spoke to the radiology technician that I ate a subway sandwich. I haven’t eaten a full meal in a while but I couldn’t eat any more after.

A funny aside is that I waved to the doctor as we were sitting in the waiting room and he called us in but didn’t have any rooms. We ended up having the meeting in the leaflet/handout room!

 

 

 

 

 

Radiology 29

Posted by Ryan A. Lewis on February 18, 2011

Today everything went well and I went with Stephanie. I talked to a few of the technicians who believed Tuesday to be my last day, as did I. They weren’t going to be there Tuesday so said their goodbyes. After the treatment was done (which was about 29 minutes) they told me I had 31 not 30 sessions and it wasn’t added properly.

 

Written in pen was a 31^st session on Wednesday at 9.30 am. I told them I would try to get someone to drive me and 9.30 was way too early and with rush hour I would try my best to get there. They called me a few hours later with a 12.30 pm time.

 

The time change was something and my mum can drive me. Stephanie and I had planned to go out and “celebrate” the radio being finished.  We’re still going out but that kind of took the good feeling from it. It just worked out that Stephanie was driving me on Tuesdays and that was my 30^th session.

 

I was also sick today after eating a TV dine. I had hoped I could eat OK but it seems not. About half way through I felt sick and vomited. Then I tried finishing my toaster strudel and a couple of yogurts and I managed to finish those. I have been taking Gravol and Zantec al night now.

 

My stomach is permanently queasy. I still hope it’s the anti-biotics I took the last two this morning. I will see how I feel over the long weekend.

 

 

 

Radiology 30

Posted by Ryan A. Lewis on February 22, 2011

 So this was supposed to be my last day of radiology but my nurse confirmed in their handwriting list there was 31. I guess somewhere along the line my appointment sheet was made before the 31^st session was added. Not convenient but what can you do. I’ll be going in tomorrow for 12.35 pm.

 

There were some people back that I hadn’t seen in a while and I had some things to talk to my nurse about who was paged. The session has been going really smoothly as there is no line up to endure for the spine and really it’s just about 10 minutes. Now my biggest thoughts are the nose on the mask which is very uncomfortable as it has a downward bulge that hurts and leaning down into the foam (and back up) as it makes me dizzy or can give me a headache as I’m tall and it’s a long way to go!

I talked to my nurse about the nausea and they prescribed me pms-Odansetron which is a serotonin blocker to stop the nausea at source. The idea is they are radiating near the nausea center, the same one that was being pressured by the tumor. It makes sense as anything made for the stomach does nothing. They also prescribed more tT3 (codeine with caffeine and acetaminophen), as I have been needing them recently for the sore throat and back pain.

Other than that an important fact she mentioned is the peak for side effects is 10-14 days. Now I didn’t clarify if it was at time of radiation or at time of finishing. I think she meant the latter as they warned me after the spinal sections were done (number 20) I would get side effects. It is about 14 days and it is getting somewhat better (the nausea problem).

So tomorrow is truly my last radiology appointment and my mum is taking me. Stephanie and I still went to enjoy our celebration of going bowling. It didn’t go well; even 5-pin took tons out of me. I only lasted 7 frames and felt sick. Steph took me to the washroom quickly as she saw I wasn’t doing well; I made it to the garbage! I also fell over the first attempt when I tried to like swing the ball and look up and move at once. She said something perhaps yelped in confusion, and I fell over! I think I said why did she yell, but I knew it was a stupid attempt. From then on I went to the line and threw the ball slowly. I noticed if I looked up at the pins after throwing it was rough. The reason I add this here is it was stupid to attempt this after radio.

 

 

 

 

Nausea and the “Last Day”

Posted by Ryan A. Lewis on February 22, 2011

The nausea was originally linked to the anti-biotics I was on that I finished on Friday morning (the 18^th). I vomited after eating half a TV meal Friday and again on Sunday just from drinking water. I have had steady nausea from Thursday until today; it is milder some days than others. Today when we went out for the originally last session we went bowling and to the casino.

Bowling didn’t go well and I think it jostled me too much and Steph tried to help me to the toilet quickly enough but I only made it to the garbage. I watched her bowl from there on as it was too much for me. Then we went to the Casino and played a few slots before going home. On the way home I felt nauseous to the extreme and had to open the door to vomit. It was good my wife was with me to stop, put the hazards on and help me out.

So today was harsh and probably pushed myself too far going to radiology when having this.

The good part was the nurse was able to fax my prescription to London Drugs and we got it on the way home.

It is used commonly for chemo and radio patients (as per the form), and makes sense as they are disturbing the tumor bed with radiology. It’s basically giving me some of the same effects as the tumor, especially nausea and vomiting. It brings back bad memories. I hope this medication will work well; I took the first pill a few hours ago and feel a bit better.

Other Effects

ASA an aside the only other side effects I’m nursing is a painful tailbone which could be lack of movement, but my nurse said I’m in session 30 of 31 and I shouldn’t be doing lots of exercise to counter it, if that is in fact the issue. I tend to agree judging on today. The other is I get ringing in my ears and my ear goes quieter and the ringing will switch. The good thing is it’s not lasting long; the thing I worry about is 2 weeks (14 days) from now.

 

 

 

 

Radiology 31

Posted by Ryan A. Lewis on February 23, 2011

I finished my last radiology appointment today. It was a good thing to get done. I took my mask home so that my son can paint it; make it a bit more happy. I haven’t kept a lot from radiology treatment, just my mask, the mesh and documents separately.

Radiology doesn’t affect you, at least not the way you would think. The real hit in my perspective was the reduced red and white cell count. My white cell count did well for a long time; but as the radio ions built up my white cells decreased.

Being done radiology is a good step; but I’m not done with the fear of having a recurrence. The healing and learning process that I have to go through and getting back into my role of father, husband and worker. Those are all the next steps. I’m also waiting for the secondary effects.

Either way, to keep it a positive last radiology post, everyone was happy I was done. None of the technicians who I have worked with were there when I left; except there was one woman who I had worked with a few times who I gave the card to (she wheeled me in and set me up). My nurse/doctor were not there so I gave my card to the receptionist.

When you go somewhere for that long you are going to grow a bond. I’m happy that the people I grew my bond with were intelligent and caring people.

 

 

 

Posts

Posted by Ryan A. Lewis on February 23, 2011

My posts are not going to end now that my radiology has, as you can see I started once I was able. I mean able to setup a blog on my domain (technology wise), and type properly with post-op and with my double vision. However, I will say with much certainty that daily posts are a thing of the past.

Just in case you were wondering I 100% stick by requesting/bringing/using a wheelchair at your appointments. AS I have a cane, that does support me, but during the days when some are very hard you need to be sitting. When I walk I can get very tired. Throw in the overheating caused by cold outside hot inside. Calgary in winter, it was too much. I would have fallen over quickly from the long (seeming) walk from radiology, up a few elevators and out of Foothills to the parking lots.

I’m 27 and people are having a harder time realizing just what I’m going through but I don’t care what they think. Get that wheelchair and if I save someone a fall I’ll be happy. AS someone who fell a few days after surgery, disorientated trying to get to a wheelchair (and again knocked my head trying to get to the washroom), I know it’s painful to fall with an open wound of scar down your head.

                                                                          Radiation will tire you out more each day Stephanie and I had a lady come up to us at the disabled chair in the mall and borrowed a chair and said to me “You know this is for disabled people”, I said “I am disabled”. I usually would have been furious and probably would have been if she tried to go further than that, but it shows I’m “showing” less and less. I remember talking to people at the beginning, one of the hardest parts of being disabled in a surgical procedure of the brain, is that people don’t see you as physically disabled. You don’t have a cast or a missing limb, I do have an eye patch but “do I need to sit in a disabled spot” may be their question. Unfortunately we’re temporarily disabled quite badly and I can still attest to that this far down the road.

My nausea has indeed got better. I can tell today. They’ve zapped my nausea center for perhaps the last time but the side-effect or radio-effect will still be there for weeks. I will be taking my medicine for a while religiously but will have to check myself to see if I’m OK with eating and nausea.

Nausea is a terrible thing, worse if coupled with a sore throat. However someone

I talked to on the Adult Medulloblastoma blog had regurgitation on touching their mouth. Some side effects are numerous and their level indiscriminate. Mine have been hitting me sequentially. I do wonder if all at once are better or how I would handle it. Then it questions how I would as a pediatric or senior as MB usually afflicts.

The double vision is going to be checked out with more focus. I would really like the optometrist to do the referral, yet I forgot about it and it appears so have they. Double vision is a bad side effect but I know quite a few who have had to deal with it after their surgery and even more than have had a similar problem from a different affliction.

That’s about it, I’m happy that me and my family have made it down this road. I hope the next few weeks don’t bare more teeth. I remain positive about my MRI’s however I have no real post-op (radio) plan. I’ll post that when it comes. The mail will bring such information as well. Thanks for reading so far, remember why you read it.

Cancer

Posted by Ryan A. Lewis on March 1st, 2011

When I had the tumor removed I never called it cancer. There was something definitive about it, I don’t know if people noticed me avoiding the label. Once they diagnosed it as malignant it seemed inpossible not to anymore, as that was what everyone called it.

I knew my aunt had got over cancer back home. It was hard to relate to, as was young and she was miles away. Her strength and her struggle were distant, I just remember hoping she’d be OK and she was.

They say you won’t go through life without knowing someone who contracts cancer. I’d add knowing someone you care for, and if you don’t that is the bigger tragedy. It is hard for both sides undoubtedly.

The radiology program’s side effects were hard. Right now I feel about the same, if not worse, physical state. Nausea, vomiting, dizziness etc. are the side effects which are what I was feeling before. No headaches though.

I know in a few weeks those will be gone and the big question is what will stay as permanent effects. Then there will be MRI to see if any recurrence has started. Until then I plan to enjoy the days and live in the now.

Today it’s hard just to swing my legs out of bed. But I will.

 

 

 

My Status

Posted by Ryan A. Lewis on March 4, 2011

 

                       

I feel better this morning than I have in a while, which gives me hope I will feel good by Sunday when my parents are taking the boys for a day.

It sucks that there is so much after effects really; you get lots of “lights” at the end of the tunnel I guess. First was the spinal done, and only my head. Then that Radio was done. Now I guess it’s when the side-effects and my body is done recovering.

 Right now I’m dealing with nausea again. It seems the pills have stopped working for me the past few days. I think it may be temporary as I do feel better this whole morning, time will tell. The other is the eyes which seems to not have got much better, just a bit more distance. I get ringing in the ears a few times a day and the volume goes down in that ear. Finally I can’t eat more than half a meal without risk of losing the whole meal if you get what I’m saying.

That’s not so bad, but the nausea and eating when mixed with being tired puts a damper on getting up and doing things. Time is important.

That’s not so bad, but the nausea and eating when mixed with being tired puts a damper on getting up and doing things. Time is important.

So I’m doing well and feel better than I know it could be. I just hope things continue to move along as that’s what I need right now, some progress. I still haven’t got the letter to find out why my MRI is to check the progress I presume that would be next week.

 

 

 

MRI Appointment

Posted by Ryan A. Lewis on March 22, 2011

 

I received my first MRI appointment since finishing my last treatment of radiology no February 23^rd. It is on April 30^th and I have a consult on May 12^th as a follow up. It seems like a long way until I’ll have any sense of how it went, but at the same time not much is expected to change and there isn’t much I can do if it was unsuccessful, in regards to treatment anyway.

My Best Doctors report has been finished and the doctor in Ohio is chairman on many radiology/neurosurgery boards. He agrees with treatment section and the second diagnosis of my tumor in Toronto showed the same results of medulloblastoma in type IV or highly aggressive.

He has outlined information on what to do for chemo if there is a recurrence; he also researched new drug types and trials and mentioned ones I could be viable for. I recommend using this service if you can. I now have a report of all I have gone through from another trained perspective. I also have the MRI photos which I want to put up in time.

 

 

Long Term

Posted by Ryan A. Lewis on March 29, 2011

I’ve switched from Short Term Disability as of today. That comes with my CNRL email being suspended so don’t try to contact me there. Either use the email you already have or same phone numbers. If you don’t have it email my account here. Leave a comment or contact me on Facebook.

If all else fails wait longer. It appears the email gives back a not found rather than forwarding as I thought would happen which is quite misleading to people who have been using it to contact me while I’m away.

My MRI is still on the horizon and I’m working with the scheduling group to get a meeting with my surgeon Dr. Gallagher to clear up the unhealed scab on the skull-portion of the incision. It’s been scabbed since November and itchy, I and others worry it’s a staple piece left in.

 

 

 

Where in the World is Carmen Santiago?

Posted by Ryan A. Lewis on April 14, 2011

 

 I noticed it’s been a while so I wanted to update you. The nausea had an upturn last week. From Monday to Saturday it was terribly strong and I was sick 18 times. Since then it has subsided quite a lot and I’ve been eating a lot of watermelon and light meals. It’s got good enough that my friends came over yesterday with ice-cream cookies (!) and I was able to eat half a one.

It’s hard, and people have emailed me who have partners who have got through it but at the cost of a year of side effects from the radiation. I hope it fades enough over the next few weeks that I can live amore regular lifestyle. Taking a shopping bag with me to a movie in case I’m sick is stupid.

So strange what can save us can really hurt us.

A big positive is Stephanie got my appointment with my surgeon for next Tuesday, so hopefully I can get some light shed on the back of my head that will not heal.

 

 

 

 

Surgeon Update-Diagnosis.

Posted by Ryan A. Lewis on April 20, 2011

              

 

I talked with Dr. Gallagher on Tuesday with Stephanie about the unhealed scab on the back of my incision. She was unperturbed and said it is healing fine. She said if it is itchy then that is a good sign. Infection or leaking would need attention. Dr. Nordal my oncologist did mention that radiology would slow things down any healing.

The staples they use are biodegradable so that would not be it. It is a deeper wound that takes longer to heal and was aggravated by the radiology treatments. So really it was good news on the lack of healing. It does feel smaller to me when I touch it, but the itchiness is still there.

I mentioned my double vision but she still recommended waiting for the appointment with the optometrist. It has been 4 months now so they should be calling me right away.

 

 

First MRI Done

Posted by Ryan A. Lewis on May 4th, 2011

           

My first MRI completed on Saturday. My mum and Dad took the boys overnight on the Friday and for the first time Stephanie went to a movie and I went to a comedy  club. I’ve got used to having her with me so this was a big moment. I was with 2 of my friends  and it worked out well. I did take 2 tylenol 3’s as I knew I would be sitting for a while.

 

We even able to stay for drinks, and of course by that I mean water! UI didn’t get home til late and felt more normal than I have for along time. Until the morning when I found my head strapped with a loud magnet floating around…! Stephanie enjoyed the movie and time away to relax.

Appointment

We went in and my appointment was at 2.00 pm, it took 1 hour 10 minutes in the MRI machine! It was very long. I should have taken Tylenol, as cramps are expected for scans that long. They did give me music via headphones to listen to which helps with al that noise. Depends on the MRI place.

It was a a lot of work to get it set there at that time, considering it was at a far off hospital at 7 am originally. By the time I got to the right booking lady I got it changed to 2.00 pm at a close diagnostic center. Do the same for yourself, convenience is the least you deserve for an MRI over an hour long.

The results are unknown to me right now, my consultation with my oncologist Dr. Nordal is on May 12^th and I’ll post then. Today was great, my Aunty and Uncle, Rosemary and David George from Ontario, and my parents came over. It’s nice to have them all here. Even better to know my family is rooting for me,

 

 

 

MRI Results

Posted by Ryan A. Lewis on May 12th, 2011

           

It took me more than the appointments to get the results but they did come. There is no sign of cancer after radiology which is great news for myself and my family. Thanks to everyone who have been sending me words of  support, it means a lot to me.

Consult

The consultation was not with my regular doctor, Dr. Nordal. It was with Dr. Lim one of his colleagues. He was still very helpful and understanding. He apologized right away that my MRI report had not been received and usually it only takes a few days, not 12, which is where we were at. He asked about how I was feeling, regarding dizziness, appetite etc.

We also did a neurological checkup, including following his finger etc. I did a balance test where I did a balance where I stand with my feet together, eyes closed and balance. I did at least 15 seconds which is great. Before I went to hospital and the ENT (ear nose and throat) specialist thought I had BPPV (a type of vertigo I  couldn’t do this for one second.

 I asked for a sleep aid and he felt the problem with staying asleep was not due to radiology but before radio I slept quite well! I don’t have a problem getting to sleep, it’s staying asleep. He prescribed a light sleeping pill which I hope will get me into a routine. Rest is very important.

I also asked for my date to be changed as Dr. Nordal had put in my date after the consult. It was for June, there is no way by June 1^st I can do full time work. I’m still 151 lbs. from 200, I’m rather weak, can’t stand for too long and cannot eat regular meals. Not to mention the surgery problem of the eyes this makes balance tough. Long story short he had no problem changing it at all and has made it for 3 months and to be reviewed at that time.

The Call

Dr. Lim asked if I wanted a Call or if no news is good news. Well if it was a sore toe then no news would be fine but as this affects my entire life I wanted the call! We went away unhappy thinking it was a long drive from Copperfield to Foothills (one hour there) to find out nothing.

 

Yet at 3.30 pm my wife got a call while she was picking up my medication and they said the report shows no cancer regression. As you all know that doesn’t mean I’m cancer free (a common misconception) but gives me hope that this radiology and surgery has removed the cancer and no remission will afflict me in the future. It’s as good as news as we could get and now puts me looking forward to gaining weight back and some life stability with it.

 

I called my brother, Mum and Dad to let them know. I know they were all rooting for me and worried. Thanks to you all, this is the first and perhaps most nerve racking, so I’m happy for the news of course.

 

 

Digesting the First MRI Results after Radiology.

Posted by Ryan A. Lewis on May 15th, 2011

 

When the news eventually came to me via my wife calling I was happy. Yet I was more relieved I made it through my first MRI. I guess there is a bit of “next 3 months” anxiety immediately, and so on which will end up being for the rest of my life. Yet everyone says it gets better and the first while will be tough.

Everyone that was connected to me was very happy, tearful and sincere. I personally don’t feel the same relief but I think it is a confidence thin. I’m still happy, don’t get me wrong. But if you are a patient know your emotions may be all over the place from the news.

Here are some quotes from the emails sent to me from the Medulloblastoma group I am a member of at Yahoo Groups (highly recommended joining this if you want to get real support from people who truly relate, family of patients too).

A joy for others maybe because they were forced to deal wiyh the possibility that you may not survive, had to witness your pain and stand back knowing there is absolutely nothing they can do about it. Myself , I don’t know that I found it difficult to relate to the joy feeling, but looking back I think my own reaction was kind of like a “forced joy” if there is such a thing…

Kim (38 years old) diagnosed Jan/1999

 The feelings are always there during testing time, but we have deep faith that he will continue to be healthy. It does get better I promise you. WEW always feel relief and then joy.

Laura wife of a man diagnosed 4 years ago.

For me, most have been a feeling of a combination of joy and relief from the beginning. It is hard to think of what to feel about MRI positive results because as you said you will be getting another MRI soon. It took me a long time to stop holding my breath while waiting for results. Thankfully I have never had a bad one since my original craniotomy, just some scares. I have a little bit of optimism at this point. Although a little piece of me always remembers that something that wasn’t supposed to happen to me did and could again (Dx of Medullo after 510. But it still feels just as good when I see the actual OK results.

Arlene diagnosed after 51^st birthday.

Ryan, I was so happy my first MRI was clear. I am past 4 years now and go every 6 months for an MRI. Clear so far but I still get a little nervous.

Bob diagnosed April/2007

I am also a survivor. I’ve had ‘The Big C” (Medulloblastoma) for over 5 or 6 years.

Mailhot Michael, Calgary, AB

Just read your commentary on how you are getting on with treatments-got to say well done, when you are being hit with those drugs to keep positive is amazing-stay with it mate I firmly believe with that sort of attitude you are going to be with us a longtime.

Barrie, posted June 24^th, 2011

Log in reply:

Ryan A. Lewis

Thanks Barrie, great to hear from you. Iam confident this is thecright wayb to go for me, and I have been knocked down from this first cycle but happy things clinically wise are better.

Hope you and your family are still doing great!

Love Ryan.

 

 

 

Swimming at Mount Royal

Posted by Ryan A. Lewis on May 18th, 2011

Mount Royal Swim

I went swimming on Tuesday (yesterday) with my brother at the open swim. They use chlorine and salt water mix, so it’s quite nice. I managed to hold my breath for 30 seconds (better than when I smoked years ago at least), touched the bottom of the pool and swam 3 lengths with a board and 2 doing breast stroke without a board.

Needless to say breast stroke is a huge workout difference from kicking my legs. I told Dylan that it is more like you are kicking your limp body forward, without the board you feel more like you are cutting the water and flowing forward. Dylan swam next to me with the board both time, as I didn’t want to get tired in the deep end, and neither did he want that either!

The hot tub was broken but I probably couldn’t have done long anyway. The steam room was great as I ran to them. I was so cold! Even with my towel I have like 0% body fat to keep me warm.

Double Vision/Prescriptions

Something I’d recommend for people with near sightedness, and/or double vision is to have a special patch kit from Dr. Patches (http://www.drpatch.com) which works well for a patch, but my goggles would have been fine without. As the double isn’t so noticeable when you are swimming, but not seeing one direction is.

The next time I will just go with goggles, no contacts, patches or anything. I always bring a cheap pair of glasses though of course; have to see before and after! I think prescription goggles are a good idea, with no lens covering, if you are serious about swimming.

 Swim Plan–so far

My plan is to get a 10 pass and swim weekly with Dylan at Mount Royal and weekly/bi-weekly with my Dad and one of the boys at a family pool.

Physiotherapy has to get a new referral from my doctor as I was told I missed some appointments in the early days of radio there and they discharged me! I don’t remember missing any without canceling but I was on a lot of steroids that made it hard to remember some things. I tried putting appointments in my phone as much as possible.

Radiology appointments changed sometimes the day before (“Oh come in at 10 tomorrow if you can”) due to machine problems. Yet what I learned is I should have had Stephanie do all the appointment bookings, especially when more often than not she was my transport and support there too!

Recovery Category

 I added a new category called Recovery. Something else that perhaps isn’t written enough about. I’ll cover my physio, swimming, eating changes and anything else that has helped me along this path now that my weight has stabilized and I’m feeling stronger.

 

 

Self-Diagnosis Has Changed

Posted by Ryan A. Lewis on June 4th, 2011

So I had a cold the past few days. It started Sunday night, was strong on Monday, and is less today. When I first got up my head ached badly, and right away I thought it was CSF pressure! I took a T3 and the pain went away (obviously not pressure). Then other things started happening like my dizziness increased, spots in my eyes etc. I was still a little worried but then my nose was blocking up and my stomach wasn’t handling food as well as it had just the day before.

Finally I checked my temperature to be sure and it was over normal at 100 degrees, nothing too much, but obviously my immune system was fighting something. And now today I feel much better. Self-diagnosis has changed, I need to remember I can get colds and just what those feel like! Not everything is remission or some related cancer issue. This is the first cold since surgery so I’ve done well protecting myself from the various bacterial bugs and viruses out there.

 

 

 

Remission/Recurrence

Posted by Ryan A. Lewis on June 4th, 2011

I just re-read my blog from May 24^th. Well how wrong I was. It’s not a cold, unfortunately it’s come back. It’s in two areas: a thin slight ring around the forth ventricle, the same ventricle on occurrence (as per medulla formation). And now in the third ventricle, a trickier place it appears.

Metastasis

Except for now it has spread to my third ventricle. A harder area to get at surgically and is surrounded by the thalamus (communication to the medulla), the hypothalamus below that (body temperature, hunger, thirst, fatigue, sleep and circadian cycles [non-24 sleep-wake syndrome]).

The third ventricle has formed a halo ring, and I presume will begin to fill in and cause some serious CSF problems and blockage. I would say I experience(d) everything mentioned about the 3rd above. In symptoms, but the nausea center is a problem area, sensitive from the pressure and surgery before and between those ventricles.

Surgery is dangerous here due to all the important autonomous systems like it was fore medulla, however the entry points are much tougher here. I don’t know details other than internet, so when the team meets and formulates a plan I’ll go from there.

Fourth Ventricle

The cancer growing back there has probably been an exasperating symptom ride because of it.

It looks like a thin semi-circle on the posterior side. I can, they say, have the same surgery here.

Why so quick

No one knows for sure, my IT working hypothesis is that when the tumor was disrupted and removed some live cells moved around the CSF and into the 3^rd ventricle. There it stayed where treatment did not reach. Behind it and below it was bombarded by radio, but not directly. As months went by it reintegrated into the CSF and re-infected. It makes sense in size as the 3^rd ventricle tumor size is about 3 times larger, but also the ventricle is small really compared to how enlarged the 4^th was at surgery.

It’s believed cancer was there, but feint, so unnoticed May 12^th. Time really wouldn’t have saved me here, they are still small rings really. They may have been too small to consider anything much for treatment as well, I don’t know at this time.

After Wednesday

After these Wednesday’s meetings I’ll fill everyone on what’s going to be happening from the team of doctors.

Last Note

Looks like I need your help more than ever. Stay optimistic with me. I’m more worried due to the placements here, so putout good feelings to my whole family. Thanks for reading, trust me I wish I could have written better news for us all.

 

 

 

In-Between Info

Posted by Ryan A. Lewis on June 7th, 2011

I will obviously have better information come Thursday after the meeting, but this splitting up will help you probably understand better as it has for me.

Blood and Urine Tests

The doctor on the floor of the 46^th unit has been treating me well and requesting the right things. I can’t m  of his last name so he’s Mr. S to me. Today he ordered blood and urine tests as well as some neurological exams. He has similar aged children and he along with the others are shocked. Yet he said at the same time another 27 year old was here with remission on Medulloblastoma, so how ironic is that,  same hospital?

The blood test results are not back yet but I wanted to let you know they are off. My veins are so thin they could only get 3 and came back for the CBC/Hemoglobin/Counts etc.

The Urine test was a bit later and that was related more to the drinking of fluids at a high rate and checking what’s happened.

CT Scan of Spine

Yes, my scan came back all clear after the second go over. Only Mr. S scrutinized the report enough for me so far, so I am not saying positive news on the spread front until Dr. Nordal gives me his own thumbs up.

Neurology Tests

Dr. Gallagher’s team mate tests my neurological responses the same as the ones from before. Follow the finger, flash past eyes with light pen, check vision, peripheral, push on arms with various limbs and using the hammer to check reflexes on strike and rubs.

More to Come

Perhaps I will get new information today, but Thursday for sure, and hopefully I’ll have time to post.

 

 

Visits and Change

Posted by Ryan A. Lewis on June 8th, 2011

So I’m still in Foothills Hospital getting to grips on my first set of symptoms, while carrying the tumor(s). The big one change was drinking or thirst, which seems to be getting better since a nasal spray, but I’m monitoring intake/output hourly of urine. Eating is pretty good; I’m on a lower dose of decadron (2 mg/dose/3 times as day). Lots of hormonal compliments to the pituitary gland; but the hypothalamus, and thalamus should be fine. Basically setting myself out, while the Doctors (surgeon/neuro/chemo) figure out the go forward.

Family

I’ve been focusing on family visiting. It’s been so very busy, waking at 6 am, immediately starting this role of drinking and urinating and writing it down with not much time to relax or just write like this. Then I have a chance to see someone or talk for an hour after breakfast (around 10) before blood tests; blood, urine or physical usually start, and then Doctor visits. So then it’s lunch, and family visits until supper. In between I bath, try to watch a bit of TV, take it easy, and catch us up on their and my own day.

It is different than last time when it was a shock, it moved fast, and then really set in. I’ve had the shock and the reality, and now it’s finding the best plan for me, and getting it out. The family is larger than you think sometimes, and worried, and I’m happy we’ve worked out a god rhythm of visits so far.

It’s good to check back here or tell anyone questions if you want me to post answers. Anyone can relay then back to me and I’ll give an answer. I was so close to seeing all family, across the pond, but looks like that will have to wait. I know you all still have hope, and are optimistic, as am I; just feel more unfortunate as I felt I was moving forward. Please keep reading, and keeping faith like you have been.

Friends

Everyone wants to come and visit and help which is great, but it’s different than last time. I was “healthy” and was rushed in so everything flew by. This time lots of tests, diagnosis, double checks, and planning is happening. I still don’t have a treatment plan. That’s why I want to spend a lot of time contemplating and thinking more than I had the chance to do the last time. I have been getting info out here, and the occasional phone calls.

Once I have a plan, then maybe I can start more visits. For now I’m tired already and haven’t begun! Looks like we were so close, and everyone so happy, but now it’d\s starting over. And I need everyone just the same if not stronger, and I’m happy I have you all waiting.

 

 

Latest Medications

Posted by Ryan A. Lewis on June 8th, 2011

I don’t have that many drug medication names, but basically they have been focused on the same as before plus hydration and constipation.

Decadron: steroids are back, lot in this category on Decadron

Codeine: painkiller as needed

Motilin: aids in digestion, increasing pepsin

Kytril: strong anti-nausea

Regular constipation pills, Lax-a-Day, powdered daily laxative

Pantoloc: proton pump inhibitor for severe indigestion

Zopicione: sleeping aid

I also have a nasal spray for thirst, and hormones/secretions are still being monitored by the endocrinologist teams. I’ll probably have a better list come Thursday to share.

One Response to Latest Medications

Sharman.

Hiya Ryan

I just want you to know that we are all sending you love and positive thoughts to you. Your blog is excellent and it’s good to hear your positivity. This is just another crappy curve ball life has thrown at you that you have to overcome, but I know you will overcome it. And I am going to get my hug here in good old England…I’ll just have to wait a bit longer.

Well lovely boy if there’s anything essentially English that I can get you please let me know.

Don’t ever give up the fight.

I love you Ryan Lewis

Aunty Sharman xxx

 

 

 

First Night Pass

Posted by Ryan A. Lewis on June 12th, 2011

I had my first night pass yesterday (day/night out of hospital, but keep the bed) and iy went quite well. The boys were carrying colds, and Stephanie’s sinuses are terrible! I decided to stay with my Mum and Dad and Dylan as well in Evergreen. Nice big bed again: yey!

Daytime

The day went very well, my Mum got me home there quick and we got ingredients for high calorie drinks as my weight at hospital is at best like pogo. One of the drinks is 1350 calories by itself! Mum got some drink containers that I will keep in the fridge in hospital and when she comes we’ll trade. They all tasted great, from Avocado to Nutella recipes from the nutritionist.

Fuze and Powerade were good as drinks on ice while I was there and the diabetes insipidus (more to be posted after today when I have information, didn’t come in till I went to bed. Sadly very little sleep this time.

The kids were great and played well, but all got a lot of pressure on my head after dinner and I took a lay down. Steph dropped them off and went to church and picked them up after). Ethan did make me sad when he left as he said “come home” in his way when we left, that said, come home for good, and read me to sleep. He’s a great boy. Will was his same good-old-happy him and was a good time, not afraid in the context either.

Dinner was really filling roast chicken, beans and hash browns with bread! Wow! And I had a crepe for afters. The stomach is much better on good old Decadron.

Night

The night didn’t go so well, I tried to go to bed at midnight and my ADH/hormone went nuts and my dry mouth was terrible. I went pee like 2000 mL in 4 hours, it was nuts, when all I was drinking was cups of ice doused in pineapple juice! I got probably 1.5 hours sleep until 7.30 am.

Then we packed up and I and my dad came back here to Foothills and setup. Mum has gone to get the kids and they’ll hang out together today.

Altogether

It was good time, it would have been nice to sleep in the big comfy bed and the privacy, but we just haven’t got a hold of this diabetes insipidus yet 9as I’m presuming it is , it could also just be ADH/pituitary failures). I’ll post tonight about what’ve learned through it all if I learn the full story, as it’s a lot and the internet sucks for some info.

I hate when you’re in-between the stuff. I’m not on the hormone-activating drug that can stop it, and I haven’t had the tumor removed that’s faking it, so I’m trying to figure out what can alleviate symptoms.

Stay tuned, and I hope that article will help the others like me who feel like their tongue feels as if it’s cardboard or cotton-mouth.

 

 

 

Diabetes Insipidus-ADH Low

Posted by Ryan A. Lewis on June 12th, 2011

As an exact diagnosis without going inside my head or having me to switch to no medication etc. this is what I am diagnosed with as one of my pituitary gland deficiencies. It appears the rest are low (thyroid etc.) but those will be treated as they arise.

As usual this is not an encyclopedia. it is a collection of information  that I collected and also my own perspective. Talk to your doctor for your own situation if you haven’t heard me say this before.

 

Diabetes-Types

So everyone knows of diabetes mellitus- the name we commonly just use as diabetes- with type I, II, and gestational. Each dealing with resistance or lack of generation of insulin. Information on that is on the internet. DI or Diabetes insipidus however is not over saturation of sugar or like it in any way, but does deal with the same organs.

 

Diabetes insipidus (DI) Explained

The best explanation is excessive thirst and you are going to the washroom like crazy, reducing in-take has a lower effect on urination. There a few causes; mine we believe is central with lower production of arginine vasopressin or easier to remember ADH (anti-diuretic hormone). The second is nephrogenic caused by insensitivity of t6he kidneys to ADH and finally iatrogenic of drug use.

 

                                               

                                                              Vasopressin molecule

With that boring terminology out of the way, there are different types. The belief is the tumor has caused via pressure, so central. The incident cases in the population as per Wiki are 3 in 100,000 (0.00003%) right up there with medullo of in 2,500,000 (0.000004%).

That’s enough science for my blog.

 

 

 

 

Relief: In-between

When you’re in between the removal of the tumor (as in my case)  and the hormone supplement which may help relieve the urination and by consequence thirst, it sucks!  Last two nights I didn’t sleep with terrible thirst. Today it’s been from 11.30 pm

Saturday until now Sunday at 6.25 pm with dryness or cotton-mouth. They are now OK after 15 blood tests, 30-50 urination Tests, gravity points, sodium and electrolyte checks to say, he can take the hormone low dose.

          So without getting convoluted here is what helped/helps:

1. TIRED! Trying to wear yourself out so you will crash-sleep when night comes, it is worse at night when you’re just thinking. (the thirst!) My thirst eroded the effects of my sleeping pill, which sucked! 

2. ICE! Having ice chips, perhaps with a small amount of juice flavoring that can slip[p in when you put new chips in your mouth. I have half a cup of chips, with like Gator aid filled in, so when I put the glass to my mouth I get chips and Gatorade to suck on. The ice chips seem to numb the gland output and give you minutes where you might fall asleep. Or you might just sit on the pillow and take them but at least it’s not something over-bearing. Make juice ice-cubes for flavor too. If you think full ice cubes are too big or colds , put them in a cup by the bed, after a few minutes to warm a bit,  just take one and once it has numbed in your mouth you’ll be good for others.

3. POPSICLE! Popsicle NOT ice cream coated stuff! Ice cream bars will just take sore throat away for a minute and return with sweet thirst! You’ll frozen ice really. Coolness for some control.

4. NO DRINKS! Just drinking or swigging, that will give you 1 second of relief then fill your belly and could cause heartburn or the rest. Swilling/swigging in the day is great, the best, but not at night. Fuze was recommended to me by a hospital mate, and is excellent in the day for electrolytes, but at night this will just run through you. And of course just add to the pee problem.

 That’s all I found! I don’t know what they did for depression pills in the old days with all that cotton mouth?

 

 

Relief: Hormone Poll/Injections/Sprays

Posted by Ryan A. Lewis on June 12th, 2011

I searched everywhere for you, this is the best I can find.

Relief: Hormone Poll/Injections/Sprays

Hormones to get you back on track can come in pills (for children mainly), injections (hard to do solo), and sprays. I over-sprayed early on and screwed myself up a bit last week, but it worked. Injection worked, but wore off after a few hours to great effect (see Saturday night). I am trying the pill tonight and will let you  know how it worked, just a half dose.

It would be nice to have a pill to control my insane night output of pee (did 1500 mL in 3 hours yesterday…), which may just have that side effect of no thirst. It seemed to work well before, so I’m well happy my blood test came back clean on everything today.

So this is where you’re working to with the in-between with your doctor if you have DI-get a comfortable balance. And while you’re working at it don’t abuse the hormone, but try to get a sympathetic dose to get you through sleeping. Day management with in-between ice and drinks is easy.

Relief: Tumor or Obstruction Removal

For me, the tumor and hormone help will be the end of it all. Obviously I have no information on this, as it is the end-game but the idea is I’m tested often before’ during and after with the hope all hormone supplements needed for the pituitary are gone. Relief is permanent with successful removal, so that is the pie-in-the-sky.

Concluding

So by numbing you can reduce duress, sipping water at night before bed is important, and aiming to get on your hormone replacement as quick as possible your key moves. Your doctors will do the rest on the “end game”.

 

 

 

Foot note from Ryan.

Posted by Ryan A. Lewis on June 13th, 2011

 

Hi.

Oh well after writing a huge response my Occupational Therapist came in and I lost all!

Pretty much is I got the hormone and it worked for reducing my urination but the dry mouth remained which was expected.

So last night I went from 1100 mL output from 11 pm to 7 am, with 400 mL input in the same time. It almost  equilibrialized and  my electrolyte tests were good.

So from here, I continue drinking and recording input and output. No large variations are expected and I will be taking the 0,5 mg hormone for ADH nightly. The sleeping pills were allowed to work so I also got 5 hours sleep!

I hope that answers any final questions you may have , it shows it isn’t a perfect cure but gets you on the straight and narrow where if you use the relief tactics above and still eat and drink normally during the day, nights become bearable and move onwards.

Oh and in case you’re interested (and it is very silly as I could have had two massive inputs in between the chosen “timeframe”) here is the 10 am to 10 am input/output totals for June 12/13^th.

June 12 10 am to June 13 10 am 4245 mL IN/542 mL OUT

So a difference of about 1100 mL, or the large Powerade with ice.

 

 

 

Chemotherapy Info-Brief

Posted by Ryan A. Lewis on June 14th, 2011

I had a brief meeting with Dr. Esau from the Chemotherapy team here at Foothills tom Baker. WE talked about who would be involved, the process and choices, the lack of information, did some checks and talked prognosis. We did not fall on a specific design or plan today, and he was going to have some meetings and talk tonight. He may have come by when I napped for a few hours, or will come tomorrow but the initial meeting is all we have discussed so far.

Who and What

The what really just relates to the tumor metastasizing to the third ventricle and how can we now treat the tumors. It appears the tumor has shredded down into the spinal fluid and I don’t believe has become tumorous but has unknown substance. I will confirm the cohesion when I when I talk to him next and it’s expected make-up as I presume it’s something other than MB.

The who was more to do with him wanting to talk to Finlay (sp?), in New York, a world-wide expert on this kind of rarity to get his own view on the chemo treatment., as well as including local doctors who would be on the team via conference. The rarity just gets more rare as it has moved etc., all relatively unexpected events thus the treatment regime is hardly documented.

Another

There is another patient who is being treated here for an almost exactly similar problem, however it got into the marrow and beyond thus the disease is more advanced. I obviously don’t know much due to the confidential nature, but he is  a very similar age, went through treatment and had recurrence and now is going through the process and they have harvested bone marrow! Weird how rare these things…aren’t?

The Agreed Methods

So chemo is the action, a 4 drug cycle, without a determination on length. He asked me how long I was thinking of waiting until starting. I said as soon as possible. We’re both aware of my low weight, but nutrition is high and I am eating. In the end, waiting serves no-one and best to maintain than gain than to risk to lose.

I expect to know the  exact regime by tomorrow and can add that to the blog,. For now the agreed method is that we will use chemo to its full extent, where and when is the part undecided. We will use chemo til the end, with radio a last hit possibly but that is for Dr. Nordal to decide.

Also bone marrow, stem cell removal for later injection will be used. I do not know the specifics but there is the other case above who has used this. I also was told that Tom Baker Care is cutting edge and many types of treatment created are used all over which is good to hear.

Palliative Care

As this is now in the “incurable stage” as regards to giving me any percentage for progress, the care type is considered palliative or that the patient’s wellbeing is paramount, yet this does not mean that a cure will not occur on the disease. As it has moved into the spine, and also mediatized into the third ventricle obviously the treatment needs to be well aimed and work. At that point, moving on, is in the cards.

At this point the important part is the house is decked out for my convenience on day passes when I leave the hospital which may or may not be frequent depending on my body and the regime. This convenience needs to exist both in my parents and my own home., depending on my wellbeing and the children/Stephanie’s health. I have been researching all the kind of items we can add to the home to make that as livable as possible, as well as home care to help me with showers and therapy and such.

Next

What comes is the information on specifics for my chemo treatment. I will also look up the diagnoses/effects of my specific treatment as there is a lot of generalist information unspecific to that rarity I have “accomplished” in such style.

 

 

 

Chemotherapy Info-Almost Complete

Posted by Ryan A. Lewis on June 15th, 2011

Dr. Esau came in today in the afternoon just to explain what has happened so far. He had no luck getting in contact with the doctor from New York who was the only person that could be considered versed in this case. For that reason he is 90% determined he has picked the 4 drugs (which I will be getting a list of but don’t have) and the cycle treatment of on 3 days in a week period, and off one week on three 3 in the month.

Friday Start

Friday is the first treatment and wi;ll be in rooms on the floors above the one I’m in. Hopefully it will work out OK that Stephanie can be around during and after. The choice of drugs is the strongest possible, so this will be god first chance for me and them to see how I react (and as with most things, the buildup will equal more adjustment one way or another).

Today-Lumbar Puncture

I had a lumbar puncture in bed, please read my other post for usual LP details. It was the same only in my own bed, and by a steady handed Australian doctor. It looked clear and all, but obviously has cells and will be checked in the lab for content and culture. Of course there was discomfort after but went very well. I also took Tylenol to help the ache in my back. When he was checking the bone set and where to put the needle, my bone did sting and I told them, probably showing that the cancer is in fact reacting on the spine.

Future Planned Tests Before Friday

There is a PET scan which will be a radio-active element added in my blood, allowed to settle, and then a full body scan to check for tumor growth in any areas. This is like a cancer blanket test for identification. The chemical “sticks” to the cancer.

Bone Marrow/Stem Cell

AS I said that the plan was to harvest some bone marrow or stem cells for after or during the chemotherapy, I wanted to explain where we were at with that. Dr. Esau did contact the specialist for bone marrow transplants here at the center, but the response was they wanted evidence the cancer would react to the type of cycle chosen before proceeding.

This makes good sense as if it is not reciprocal and I wipe out my marrow it would be for nothing. If it reacts well then we know we have a silver bullet so to speak. There is also the obvious point that it does not work, drugs can be changed and it can be tried again without ever putting risk to suck an important substance.

Friday

So on Friday it will start and then I can post true and informative information.

 

Chemo Regimen

Posted by Ryan A. Lewis on June 17th, 2011

 

The re-current brain tumor form for my chemo cycle was shown to me today. It shows the days involved on the process and which drugs that perform and alleviate the process.

Body Size for Chemo

They took some physical tests: I am now 191.5 cm tall (6’3 to 6’4 with shoes) and 69.5 Kg (about 153 lbs.) with a body surface area of 1.92 m^2. This gives the more individual body type and metabolism rates without blanketing a patient with high or low doses when their body metrics gives a simple clue to the amount.

Set! First Day, Friday 17^th and Time, 6-8 am.

WE begin the first session on Friday, tomorrow, which granted is much quicker than the 35-40 days after radiology. This however is a strong last resort and we should use any ground to adjust the mediation. The time of day for the chemo, the first actual chemo drug administers at 8 am, but two hours before they would finish the vein for the (stronger lines last longer) and can be guided by ultrasound.

Bone Marrow Harvest-Continued

The team responsible for managing bone marrow or stem cell transplant wants to results from the chemo on the cancer. The alternative would be wipe out a large amount of positive cells and not have a valuable attempt to cure the disease.

Chemo Chemicals Decided

Dr. Esau was confident enough to name the 4 drugs (in order of admonition). The first letter is in brackets, and you can refer to the mock month cycle page to see which drug is on which days visually below.

(c) Cyclophosphamide (sigh-kloe-FOSS-=fa-mide) – Days 1, 2.

            Admission: Injected

 Side effects After 8-15 days the white blood cells will drop, returning 17-28 days later (lowered immunology), platelets will decrease 10-15 days and return 17-18 days later (more clotting can occur, pain or tenderness on needle site, nasal congestion, nausea and vomiting, headache, diarrhea, sore mouth, hair loss is  common, loss of weight and appetite.

Interesting info: Drink lots of fluid, for instance 8-12 cups or 2000-3000 mL a day. May cause sterility in men and menopause in women, birth control recommended. This does a long list of side effects however the key identifiers are they knock down blood thinning and immunity cells.

 (E) Etoposide (e-TOP-o-side)(-Days 1, 2, 3.

Admission: Injected

 Side effects:  Allergic reactions rarely, burns if left under the skin, dizziness and feeling faint, nausea and vomiting, white blood cells drop 7-14 days after, bouncing back in 3 weeks, platelets may decrease 9-16 days yet will recover and aid in clotting, hair loss is common, loss of appetite and weight loss, taste altering may occur, diarrhea and constipation, tiredness and lack of energy, pain and tenderness where needle was inserted, sore mouth may occur in a few days.

Interesting info: Can cause sterility and menopause in women, must use birth control.

(I) Irinotecan (eye-REEN-oh-TEE-can) – Days 1, 8(8.30 am).

                Admission Injected.

Side Effects: nausea and vomiting may occur, early and late diarrhea, constipation, white blood cells will decrease 7 days after treatment and rebound 3 weeks after treatment, sore mouth (prolonged), swelling of extremities, headaches, and trouble sleeping, tiredness, hair loss is common, pain or tenderness at site.

(M) Mesna (mes’na) – Days 1, 2

                Admission: Injected

Side Effects: burns under the skin, pain or tenderness at injection site, upset stomach, nausea and vomiting, diarrhea and tiredness, dizziness, and feeling feint, white blood cells are reduced 7-15 days and replaced in 3 weeks, platelets decrease 9-16 days and replaced in 3 weeks.

(V) Vincristine (vin-Kris-teen) – Days 1, 8, 15 (8.00 am).

Admission: Injected         

Side Effects: burns under the skin, pain, tenderness, little or no nausea, strong constipation, head/jaw muscle pain, numb and tingling in extremities, hair loss and thinning.

Interesting Info: Headaches, jaw pain and or muscle pain, numbness or tingling in the fingers or feet (may take several months to recover), and hair loss and thinning are quite common.

My bottom line is that C and E have a lot of side effects mainly related to white blood cell and platelet reductions. The common overlapping side-effects are hair loss, diarrhea, constipation, nausea with appetite loss and finally sore throat.

Cycle Explained Daily, Weekly, and Month

Below lists each day of chemo in an average month, with the single letters representing the first letter of the drug. Reference each drug above. I’m pretty clear this is 100% correct, yet could be changed down to the drug if needed.

            Day 1: V, I, E, M, C, M

           Day 2: E, M, C, M

           Day 3: E

           Day 8: V, I

          Day 15: V

This shows heavy Day! followed by another heavy day, where it then relaxes to once weekly. I believe there is also another week break at the end of the month which requires no chemo. This can be confirmed over time.

 

 

New Room

Posted by Ryan A. Lewis on June 17th, 2011

I moved into a new room on the same unit (46/47) but different area in the Foothills Hospital in Calgary.

 

Old Room

I shared a room with two other people who were dealing with cancer and some other diseases/problems. Curtains separated us and we had one bathroom to share. There were good windows, but it wasn’t very private and hard to sleep. I didn’t have a roll out side closet, just a closet so space was limited with one sink to share.

Sleeping was annoying in that the roommate snored and loud sounds and lights were always on. Also the privacy was low and the hygiene abnormal.

New Room

It’s a private room with a big window. I have my own roll-out closet as well as a stand-up one, my own large sink and mirror in the room with lamps, fans and one TV which is flat to boot! I also have my own bathroom which is paramount with the chemo IV that follows like a shadow. The shower room is large and self-enclosed in the bathroom from the sinks and toilet. The shower room has a commode and side rail to shower.

Visitors

There is no bath up here, but as my PICC line, which I will refer to elsewhere, baths are hard and require a lot of self-discipline. It’s really nice to have this room, and the food is exceptional. Chocolate milk! For lunch today it was chicken fingers with Fries and gravy and for dinner it was personal pizza. And still the same good soups, salads, drinks and breakfast but more.

That was a great surprise, including the kitchen which is well stacked for the private patients.

They are tighter with visitors here and also the sickness factors due to the low immune system of most of the chemo patients. This is fine as I am being light with visitors during my journey here.

 

 

PICC Line in Today.

Posted by Ryan A. Lewis on June 17th, 2011

 

I had my PICC line put in this morning around 10 am (it was a fast day-stayed up til 4, woke at 6, breakfast at 8, line at 10, foot check at 1, PET scan at 2, lunch late at 43, then into “routine” with chemo starting!) with two women who made it nice and easy.

They cleaned my arm thoroughly after heating it up and strapped it to keep the blood down. They used an ultrasound to find a strong vein in my upper right bicep and fed a catheter line down the vein to the heart.

This allows for administering chemo drugs effectively without risk to the vein as well as easily allowing for removal of blood or addition of other benefit like saline. I had 20 blood “punctures” in a few days and bruises were plenty and my veins were hiding!

                                   

 

Bathing and showering have to be done carefully but it is well covered and inserted and requires common sense. Not much work maintenance wise should be done by me or a nurse unless it is many days or gets dirty or something of that nature.

The whole process went very well, they an x-ray after and they came and did a final alteration so now it is perfect (I think they pulled it back a slight bit from the heart as it was better close than further at install).

So now I’m just getting used to it on my upper bicep and will have my first sleep with it. I also now have the IV shadow everywhere I go but that does give me stability as well.

 

 

 

 

PET Scan

Posted by Ryan A. Lewis on June 17th, 2011

A PET Scan is?

I had a PET scan (Positron Emission]n Tomography) today, named a “nuclear imaging machine technique” by Wiki, and is basically a CT scan with colouring. The chemical is a tracer and for me would be finding any cancer material throughout the body as I did a full CT scan with it.

What was it like?

Well I couldn’t eat for 6 hours before

Which was terrible but I got through that I guess. Considering the test was 2 hours that was not a happy moment.

1. 1.45 pm left with the porter for CT scan

2. 2.00 pm had to have anew IV because the PICC line could not be dirtied with the tracer material which sucked but at least went fast.

3. 2.10- pm rested in chair with hot blankets in private room

4. 2.30 pm tracer material added to my IV

5. 3.00 pm taken to the CT scan for two scans totaling 45 minutes at 15 and 25 minutes with ample time to move

6. 3.45 pm back from trip with porter to finally eat cold lunch!     

So it was OK just really long. I hope to have a copy of the results from my doctor shortly. It being Father’s Day weekend more likely a lot of my news will be on Monday.

 

 

 

 

 

Last of the Three Days Tonight-Chemo

Posted by Ryan A. Lewis on June 19th, 2011

Tonight will be the last of the “1, 2, 3, 8, 15” three first sessions in the Chemo cycle. Everything has gone well, nothing too strong so far anyways. And that includes the first day which had 4 chemo drugs plus the stomach help drug.

For more information on the specifics of the cycle or chemo regime I’m on check out the list of blogs from Friday. It is very complete and informative.

PICC Line Bleeding but Cleaned

I’ve had the wrappings changed twice now, and it is still bleeding but not abnormally. It feels better than the first time which had a lot of extra, and each time is just what I need. Where the catheter goes into the vein is relatively just a hole, so it is susceptible to bleeding in the early stage but tough from all the full plastic covering and tape.

First Shower

I had my first clean which was a shower on commode today. I did it myself wearing foam shoes and all the towels and soap at the ready. It was cold in parts but for the most part went very well. I changed all my clothes, had the PICC line changed and they are wrapping my toe once it dries (unlucky I got an ingrown being silly early on after a bath).

I will say it was a little daunting by myself with so much new things but I got it done fine. I will hopefully have a bath with Stephanie in a few days with my arm over the side; it feels great to stew in the hot water here in the extra-long bath. Help would 100% be needed in the bath area (and it doesn’t exist on my side, I’d be going back to the old area for the bath).

Chemo Reactions-minimal

The only real thing I can think of is that I was that I was getting vomit lightly coming up but it went down and I could maintain composure. I was worried as it was only water, but it seemed the opposite to be true. I actually needed more solid food to digest on, as the doctor said in smaller but consistent portions, so to make my stomach more alkaline.

I’m still on a large regiment of drugs as per prior posts, but I have a lot more (4 times a day), Decadron (2.4 mg once per hour by IV0, and I’m on two granisetron (Kytril) per day; add codeine or morphine recently for a sore back which I think was triggered more Wednesday’s lumber puncture.

I’m still eating really well, in fact I’m quite hungry sitting here with no one to get food which sucks! Got to wait 2 hours for dinner at least. The drugs seem to be interacting well so far.

Tonight-Last of the First 3.

So with that all being said tonight will be the last of the (Day Cycle “1, 2, 3, 8, 15”) week so I will just have the 8^th and 15^th days. For the drugs for those days have a look at my regime post which even has a mock calendar.

Hopefully everything is well with those, as that means a break from chemo for a while and from what my nurse mentioned, the machine itself.

In/Out Urination and Fluid

I’m doing quite well myself, especially when you consider my IV. I am going to be on the drug at 6 pm for I believe 0.5 mg, then the nasal spray at 10 pm for the night time. Thoughts are I stay at an equilibrium which so far has been averaging at about 4-6 L in, 4-6 out.

 

 

 

The  Chemo Really Starts

Posted by Ryan A. Lewis on June 26th, 2011

So today I hoped to be posting all was well with my night pass; things were going well but unfortunately the expected platelet and white blood counts from the list of symptoms from my cycle all came about. My list of counts was low in key immune system areas, and I had to cancel everything. Today was the worst I’ve been numbers wise, and got side-caught by a problem with a milk-shake on top of it.

Week of Chemo

The week itself went well, going out now and then, enjoying little sun here recently but fresh air is nice. Physio is going well, and I’ve been researching the key gear for discharging days. A rollator or walker with seats is great as it encourages me to be active but stable. We already have great ideas for which ones as physio lends them to us here.

Red Cross already has sent out one for my parents, and I plan on getting a specific one for when I’m back at home as well. A wheel chair has been donated by my brother’s friends Dad who recently passed., and IU will look forward to continue my comeback with it. So we are waiting for the Occupational Health Therapist to check out our home for those things which will be much later, this is more to see what I need now and when I go on passes from the hospital.

Friday 24^th June

This is where all the counts came down and I had to change what we were going to do for any passes. The nurse explained them well but I do have Wiki links, yey my wording is : WBC (white blood cell) count is for infection control and under 4 is low, with neutrophils the key to the process, a zero count is terrible, hemoglobin is the red blood cell count and mine was nice and strong, platelets are for blood clotting, under 50 is not ideal and surgery would  be extremely risky at around 20, potassium in blood counts is another kidney monitoring and blood flow check and 3,4 was fine, creatinine is an effective way to monitor kidney movement within the blood system and 48 was fine.

Counts

White blood cell counts: 0.2; neutrophils 0   Hemoglobin: 97    platelets: 43

Potassium: 3.4    Creatinine: 48

These are the key counts they use in monitoring if you have become overly immune deficient or neutopeniant. My blood is being taken every morning and I am on GCFC injections to boost my WBC. So far they aren’t working but I hope for an increase on Monday.

Terrible Bloating

So after all that I took it easy with eating and such today and felt a lot of the tiredness. With that being said I had an excellent nurse who explained a great deal to me and was very helpful today,. She told me they make soft-serve milk shakes for patients and with protein powder., so I got a strawberry one.! Sol nice to hear, but unfortunately I don’t know if I’ve become lactose intolerant or he milk was off. I drank it at the wrong time in my weakened state or drank it too fast, but I got TERRIBLE bloating pain and diarrhea. I still do and they have put me into isolation in the room and sent off a stool sample to be analyzed!

Darker day out of no where! Stephanie and her mum came over for a bit as well as Kent and Dustin. It was nice to have some guests, but the afternoon I couldn’t help but complain.

I tried lying on my left, hot packs, walking (which I got tired first every time) and me on the toilet, perpetually trying to dislodge the bloating feeling. No go. I even tried drinking a carbonated drink, but the though is the problem was lower in the intestines. The hope is tomorrow there is no infection and I got unlucky drinking the milkshake too fast or something like that.

Next Week

We hope that everything climbs back and I can continue on ay passes until this Friday when my 15^th day of chemo starts and finishes.

 

 

 

Boy I was Right-Chemo Really Started

Posted by Ryan A. Lewis on June 29th, 2011

Chemo is basically the only cause of pain, in regards pressure and movement on the intestine. The nursing staff  went through everything they could think of and came up with a diagnosis and some treatment ideas which are being used now.

Mouth Pain

I wanted to talk on what has  become of the lesser worry of pain, but once the gut is better I will be focusing on that more.

Medication List (Wiki Definitions)

1. Benzydamine. Available as the hydrochloride, is a locally acting non-steroidal anti-inflammatory drug with local

Anesthetic and analgesic properties providing both rapid and extended pain relief as well as a significant anti-   inflammatory treatment for the painful inflammatory conditions of the mouth and throat.

For me it is the fresh pre-rinse with a sharp chemical taste! I cannot swallow this one, rinse only, 15 mL.

2. Pink Lady (mine is white, go figure)…pink lady is a term used for a drug cocktail used to treat

   gastroesophageal reflux. It usually consists of an antacid and the anesthetic lidocaine. Some variants contain       

   an anticholinergic. The name of the preparation comes from its colour-pink.

For me it is the numbing and pain control for the whole situation. This would be where I could go eat and come back for drug 3 as well. I can swallow  this one which works best to coat as well, 300 mL.

3. Nystatin…is a polyene anti-fungal drug to which many molds and yeast infections are sensitive to,

    Including candida. Due to its toxicity profile, there are currently no injectable formulations of this drug on

    the US. market. However, Nystatin may be safely given orally as well as applied topically due to its minimal

    absorption through mucocutaneous membranes such as the gut and the skin.

For me this is the anti-fungal ‘let’s not get a growth part”. My throat is more raw with occasional flare up because of doing this, and I hope to continue that. I always swallow this once, 5 ml. 

They’re in that order as well, with Club Soda and brush first. So I also use Club Soda for pre-rinse, it dissolves off lots as well as brushing each time or using the green sponge swabs to wipe the gums. It is a big regime and I can’t drink for one hour after but it is well worth the feeling of clean after its all done.

Counts Have Risen!

The new counts have come back and they have indeed risen from yesterday! Which was great news from one of my nurses on the side, I’m happy she knew I’d be pleased.

            Counts

            White blood cell count – 0.3; neutrophils-0

            Hemoglobin-101 (they dropped to 84 at 4.30 am)

            Platelets-29 (they dropped to 23 at 4.30 am)

            Potassium-3.1

            Creatinine-46

Now it looks like some have simply lessoned, in fact in the case of the kidney monitoring ones they have by a few points! Yet the important ones all rose except the neutrophils which may need that WBC to go up first anyway. The platelets and hemoglobin would make the least sense to you in that they are in fact lower on the platelets and I’m getting excited, so I’ll just include that explanation in my transfusion section.

The important thing to know is there is finally reception to these increases!

Transfusion #2-First I’ve had for Chemo

So they gave me a blood transfusion, I had the cross-section done a few days ago in preparation, however I’ve had a lot of blood and CBC’s taken so A- is probably no surprise to you either. I was so lethargic and bummed out in the morning again, but the transfusion has given me ample energy to write this for you as well!

Hemoglobin…So my hemoglobin continued to drop from that original posting I made yesterday of 97 overnight all the way to 4.30 am where it hit 84. I checked the old posts and we did the first transfusion at 76 and I know I was really tired at that stage (don’t know how Lisa can go under that!). It makes perfect sense why I was sleeping all day, not the stomach issue.

So either way, I was at 84 at 4.30 am today, and I’ve climbed to the highest now at 101.

Platelets…My platelets of course went down from 29 to 23 by 4.30 am a big drop from yesterday’s posting of 43, if you remember it was 50. Much consideration of movement and bruising/bleeding: 20, no surgery due to bleeding/clotting! So for it to go up from 23 to 29 naturally without a platelet blood transfusion is good news.

After tomorrow we may find it’s naturally moving back up with it or that we need to do a platelet transfusion for it separately.

So either way I’ve climbed up 6 points naturally, which is a good thing.

Stomach Pain

The stomach pain was still there this morning; even though I thought we had got it yesterday as the afternoon was a great feeling at the time. We did a lot of trails of medication, and diagnosis via X-ray to land on our end diagnosis. The problem is that I have stool just sitting in my left “moving” bowel that is not stationary and is between the large bowel.

There is not  much you should do here, medication is already at a high point with me as I’m on painkillers such as an IV morphine (I think they call it morphine or something). As well as others. I was also getting injections on top of all that which in the end were not and will not work.

The end treatment we landed on was not eating for 48 or so hours and monitoring that it clears naturally. The bowel is dilated so we cannot be risking stressing that. I also took a suppository (yey!) which I thought had occurred yet that was the lax-a-day, and got hit “hard” just an hour or two ago and ran like crazy man to the washroom!

The hope is the fluids (and increased IV fluid as well) with no food/stool entering and putting more pressure will cause this blockage to naturally clear and relieve what was a blinding painful side-effect of the drugs and chemo. My pain level was about 7-8 during 15 second waves of pressure pain, subsiding for 30 minutes to one hour all day and night.

My treatment, as drugs were not helping, was mainly laying on my left side  (which is strangely where the blockage is…but was recommended earlier) and using hot backs to push intestine bloating up and hopefully out. Not much really in actual medicine treatment at that stage.

So in the short, hopefully this no food diet will cause it all to clean out and pain to go away.

Physio

I had to cancel my physio with a young guy here called Nathan who was nice enough to be a common face while Trudy my great everyday Physio was on vacation. Yet with this pain (which I also thought was making me Tired)( I didn’t go. Now that the transfusions are pepping up I will for sure go with him tomorrow at 10.30 am.

I need to be active! My doctor did say no way for physio today though, LOL.

Chemo Expert, Dr. Esau Back

Dr. Esau came by today, back from vacation, and he had good news. He got a hold of that expert in New York and he agreed with the treatment exactly to the point. So we know we’re on a good battle. Also the bone transfusion is in his mind as he wants to hit this as hard and concise as possible. However he was clear if everything is going fantastic by like the third cycle, then we would probably maintain and continue as it isn’t risk for nothing.

I am very happy to have Dr. Esau back, as he has a lot of good information on the specifics of my chemo. And in the end, he was expectant that the stomach issue could arise and wasn’t out of hand on it at all.

This Week

So I’ll be working on not eating! And of course monitoring this throat, transfusion, physio, stomach pain, and day pass renewal when the time comes. It’s good to have a lt to shoot for now, it was getting a lot considering its only been a few weeks on the cycle. I do have to couple that with the knowledge I’m approaching a month hospitalized longest ever in a row).

Yet in the end I have a clear definition that I didn’t have on the weekend, once more

 

 

 

The Count and Hair Loss

Posted by Ryan A. Lewis on July 1st, 2011

I now understand why Count is so obsessed as the crazy counting vampire of Sesame. Blood!  Yes! Ha ha ha ha! And I wanted to talk about the start of hair loss as it was a theme on the AdultMedulloBlastoma@Yahoo.ca mailing list this week.

     Count von Count- Ha ha ha ha 

I have the past 4 days loaded into Excel so I will paste in table for you. It shows a steady climb in the key areas yet Hemoglobin is up and down which goes in tow with not only my energy but unfortunately with things like clear fluid diets which zap what little calorie energy I have for this tiny frame.

The counts themselves are most revealing and now promising my Immune system can rebound quickly on its own. This means day/night passes, this means going to my parents and seeing my kids and being somewhat still isolated from the kid germ filled home! It means great news.

The list below shows that by the 4^th days of injections my white blood count has sky rocketed to what I was before. When I came in I was told it was about 4.4 so the gain from 0.2 at my lowest is exceptional. And to have the neutrophil climb up to 6.8 gives me a huge boost to go out and enjoy the air, so literally. This also means no chemo today as my platelets did not rise to the level Dr. Esau wanted. He said it is usually 100, but I am a fit guy and he wants to push that at 60, but as we see it didn’t get out of the 40’s.

                                         28-Jun               29 Jun               30 Jun               30 Jun

WBC and Neurophil         0.3                    o.5                    1.6                    8.6

Hemoglobin                       101                   98                     85                     116

Platelets                              29                     28                     33                     35

Potassium                          3.1                    3.3                    3.8                    3.8

Creatin                               46                     49                     –                       –

The Hair Loss

The topic of hair loss and those items came up on the mailing list, and a lot a lot was said on what could bring back some growth. Most do seem to have small patches and I believe I do on the left back of my neck as it’s like sandpaper hair  when compared to my amazingly soft “locks” I have now.

Just so you remember there is an article on shaving, a few in fact, and it stopped falling out or growing at 5 mm for months. It is very smooth, I think it got a radio cleanup and thinned it. Might be different again after this loss as we can see white and blond hair escaping from the last.

The drug which came with many recommendations was Nioxin. Expensive was the claim but it takes months and works. Lots were being said here and there, but 3/5 recommended this without anyone asking about shampoo.

And if you’re curiosity is it came out washing my hair. I wiped about 10 hairs off, rubbed, another 10 hairs. That was the first sign and was 5days ago. Now deodorants and such pull off hair so it’s now coming out almost everywhere. The beard seems immune but Stephanie even said my eyebrows look thinner.

2 Responses to: The Count and Hair Loss

 My dear Ryan

I hope you are reading this not long after I have. You are giving us all a scare at the moment but we are all praying that you will be back fighting this dreadful thing. I say thing cause the treatment is as awful as the cancer.

I have read your blog every day, you are a brilliant writer it’s as though you are here chatting to me…we both get told we do too much of that but we know don’t we there’s so much to say? Its cause we are interested in everything and everyone…not a bad thing in fact, more people should be more interested in what’s going on in the world! Nothing like a good old chinwag…good fro the soul!

All my love is being sent to you lovely boy…remember if love and best wishes could make you better you would be…so many people are rooting for you.

I love you Ryan Lewis

Aunty Sharman xxx

 

 

 

ICU Weekend

Posted by Ryan A. Lewis on July 7th, 2011

Over the weekend I became infected with ammoica-strep from my PICC line. I was transferred to the ICU unit and aided with oxygen and many cords and wires. My parents and Stephanie were called in and I was on strong drugs and I didn’t talk. I was uncontrollable with my arms and legs and do not remember anything from that weekend except what I was told. And Steph had pictures of me with the cords and wiped out!

PICC Line

The bacteria came from my arm, on the skin, through the cord that travels to my heart. It was incredibly quick considering all my counts were doing very well, but it really seems my luck is as bad as possible recently. Chemo was never going to be easy as the aim was to be aggressive and make sure we defeat this stupid cancer.

Everyone was very upset, especially Dylan. It just feels like I’m being given every possible set back that can happen, and I totally understand where my family is coming from. I don’t care about near chances as I’m going to fight this damn thing as long as I physically can for you all. My family deserves me to be around, and I don’t want to lose any of my family of friends who are so supportive. I’ve learned a lot through all of this.

Take care.

 

 

Chemo Paused 

Posted by Ryan A. Lewis on July 7th, 2011

Due to my PICC line infection the last 15^th day of Chemo has been postponed to the 18^th (Monday). If all goes well I’ll be getting home and see Ethan and Will, plus have a good sleep in the spare bedroom of my parents.

Night Pass

The night pass from hospital allows me to leave the night and I plan on taking advantage of it as long as I am doing well. I haven’t seen the boys together, especially Ethan, I saw Will for a bit here at the hospital on Monday. It will be nice to lie in a large bed to sleep rather than these small hospital beds.

 

 

 

Jack Marshall-5

Posted by Ryan A. Lewis on July 11th, 2011

 

Jack is a recent 5 year old I learned about, where I was invited to a Facebook account and his name was mentioned by the owner. I read his story which is very touching and wanted to share with you all.                           

A ManU Fan Facing Stupid Cancer

Jack has been really strong in his fight with cancer, which has been for 2 years for him. A constant battle that he now appears to be winning and I’m very proud of him. His story is very similar to mine, if this happened 23 years ago, including a lot of stunning factors.

The best places to learn about how strong, smiling and hopeful young Jack Marshal is.

p.s.     At 11am this morning Thursday 13th October, 2011.

The Manchester United fan passed away wrapped in a blanket in the team’s colours surrounded by his family at home in Scunthorpe, Lincs.

Mum and dad Craig and Tracey said: “We are all devastated, but take comfort in the fact that Jack lived life to the full to the very end.

“We are so proud of Jack and the way he dealt with his disease, with a smile and a glint in his eye.”