Christmas in Langley and Back to Victoria

I didn't really write much of anything in my last blog post so here's a quick update to fill you in on what's happened over the course of this past week:

I was officially discharged from the hospital last Sunday, December 21st, which happened to be my mom's 60th birthday! Kaitlin picked me up at the hospital, and I returned to my parents' house in Langley where Mom, Dad, and Jean were standing at the end of the driveway with a "Welcome Home Chris" banner.

Getting discharged so quickly was better than anything I could have hoped for, because before the process began I was told that my recovery time in the hospital (post-transplant) would be 2-3 weeks. This would mean I'd be in the hospital for 3-4 weeks total, and since I was admitted a week-and-a-half late, we were all expecting that I would be in the hospital on Christmas. Well, my blood counts rose quickly and the chemo side-effects didn't last too long, so I was discharged after only 11 days post-transplant! Total time in the hospital? Only 17 days.

Monday - the first full day at home - was pretty difficult. I was still extremely fatigued, dazed, confused, and headachy, and spent most of the day sleeping.

On Tuesday, I had to wake up early for my first outpatient appointment at the BMT Day Care Unit. Kaitlin and I drove to the hospital, and after we checked my vitals, the nurse took some blood and sent it to the lab.

This was supposed to be the first of several outpatient appointments over the next two weeks, so imagine our surprise when my doctor came into the room and informed us that my bloodwork looked great and he would be removing my Hickman line now. That was it? I was done? No more hospital? No more appointments? Yes!

I asked if I could keep my Hickman line for a souvenir, and my doctor said sure. After it was removed, the nurse went to clean it. Upon her return, she told us that several other doctors had been giving her grief, worrying that I might do "something illicit" with it. Hah! Like what? Put it in someone else? "Hey kid... want a Hickman line? Now hold still... I just have to insert it in your chest cavity and down your jugular vein. Yes, I know it hurts... I said hold still!"

Kaitlin said I should sell it on eBay: "Used Hickman Line - Only $35!"

Oh yeah... this photo reminds me to mention that my hair has all fallen out now. I knew it would happen this way: Once I was discharged from the hospital I finally started to look like a cancer patient! Luckily I kept my eyebrows this time, but the doctor said it could take up to two months for my hair to grow back. I guess I don't look that much different, but I feel naked without my beard!

Also, if you think I look slimmer in this photo, you would be correct. I lost 8-9 lbs in the hospital.

Kaitlin's parents came over from Victoria on Christmas Eve, and spent the next couple days with us in Langley. It was wonderful to have both sides of our family together, and even though I was constantly exhausted and feeling like crap, Christmas was really nice!

Boxing Day came and went, and on Saturday, December 27th, Kaitlin and I packed our things and headed back to Victoria.

I wish I hadn't forgotten about my camera until the last day because it would have been nice to have Kaitlin's parents in this photo as well, but here's a shot of all of us right before we headed out. From left to right we have me, Kaitlin, Jeff (brother), Jean (sister) Cory (brother-in-law), Reed and Aven (my parents). Missing: Gord & Darlana Ball (Kaitlin's parents).
It feels so good to be home. I was away from Victoria just short of five weeks for this whole ordeal, and I am so relieved that it's basically over. Thank goodness my parents live on the mainland and were able to take care of me. I love you, Mom and Dad! This would have been a great deal harder if I had to find somewhere to stay in Vancouver... not to mention all the other details such as transportation and food.

So... what now?

I have to go to the lab for bloodwork once a week for the first month, and then once a month after that. At the end of January, I need to return to Vancouver for a follow-up appointment with my stem cell doctor, and at the beginning of February I have a check-up with my oncologist in Victoria. Sometime in March I will head back to Vancouver for a PET Scan to determine if my cancer is in remission again.

That's a long time to wait to find out if this whole thing worked, but one of my doctors told me that it actually takes awhile for the high dose chemo and transplant to do their thing. Even though the "formal" process is complete, my cancer is apparently still being destroyed as I write this. Woah.

In terms of this blog, I am going to take a break from it for awhile and focus on myself... and my increasingly pregnant wife! My healing process is going to be long and slow, as I've been told it will take anywhere from 3-6 months until I am back to "normal" in terms of energy, strength, focus, comprehension, concentration, etc.

I might write a post after I see my stem cell doctor or oncologist again if there is anything interesting to report, but other than that I will likely not write again until I have the results of my PET scan in March.

Thank-you to everyone - family, friends, strangers - for standing so close to my side during all of this. So many of you sent me cards, messages, emails, prayers, and letters of support. So many of you visited me in the hospital and brought me food, books, pick-me-ups, and things to do. So many of you have offered support in so many creative ways (such as offering up your apartment parking space one block from the hospital for an entire month), and in doing so you have all helped me to survive the most difficult process I have ever had to go through.

I feel unbelievably loved and cared for.

Thank you.

Christopher

Welcome Home Chris

 Day +11 (Sun, Dec. 21) 


White Blood Count.................................5.5 
Neutrophils: ...........................................3.8

Hemoglobin............................................96
Platelets.................................................58

Total Days in Hospital............................17

Chemo Infusions....................................14

Total Km Walked in Hospital..................66

Thanks for reading,
Christopher

Out of the Pit

After a few really low days, I am happy to report that I am slowly making my way up and out of the pit. My fever is gone, my energy is a little higher, and my stomach pain has subsided. I think I can cautiously say that the worst days are over. I am still dealing with a few issues and have a long recovery ahead of me, but I feel a bit of relief at the moment.

 Day +8 (Thurs, Dec. 18) 

White Blood Count....................0.1

Hemoglobin...............................82
Platelets....................................43

Day +8 was "headache day" for some reason. It would come throbbing at full force for awhile, and then subside. Then it would come back... and subside. Lying down helped sometimes, and didn't help sometimes. The nurse gave me codine several times, but it didn't make a huge difference.

My hemoglobin also went down a bit more today which I really noticed when I went to make my bed. I actually got out of breath pulling the sheets up and tucking them in! I felt pretty tired overall, but it was a different kind of tired than the past few days. It was less of all consuming weight on my whole body, and more of... well... my "muscles-aren't-getting-quite-as-much-oxygen-as-they-are-used-to" kind of tired. It's a bit hard to quantify.

My day was a mixture of napping, eating, and short walks. I did a total of 3 km today which was up from 1 km the day before and 0.5 km two days before.

The other thing that started today (actually last night) was... err... well... let's just say the chemo has finally had it's way with my GI tract, and the back door issues have begun. I had to give a sample last night so they can rule out C. difficile and now anytime someone comes in my room they have to wear a gown and gloves. I'm not expecting the sample to be positive but the frequency of which I have to go test the plumbing is annoying. Hopefully that clears up soon.

I also got a new roommate and he is super chatty... when he's not feeling like crap. Yay!

 Day +9 (Fri, Dec. 19) 

White Blood Count....................0.3

Hemoglobin...............................84
Platelets....................................37

Today was a little bit better than yesterday. I'm still weak, tired, headachy, and dealing with bowel issues, but it's manageable. The C. diff test came back negative, so the nurses lifted the Poison Poop Protocol on my room. I spent some chunks of today napping but also had nice visit with a lady named Loraine, who has Leukemia, and did a couple kilometres of walking. If I can pump out 4.5 km tomorrow I will be up to 70 km!

Today was the day that my white counts went up a tiny bit. The nurse said I still don't have any neutrophils, but the fact that my white count went from 0.1 to 0.3 is great! My doctor said he expects it will be around 0.8 tomorrow, and there will be some neutrophils. 

He also said "You're doing great. I would be surprised to see you here when I come back on Monday."

Say what?

Well, indeed it is true. They have started the process to discharge me on Sunday which also happens to be my mom's 60th birthday. Mmmmm.... birthday cake on my first night out.

This is, of course, pending an uneventful Saturday. If I spike another fever, or if this cough that started today gets worse, I may need to stay in a little longer. But as it stands, it looks like I will be getting out of here on Day +11. 

I'll be staying in Langley for a week or so in order to come back here for daily check-ups, but if all goes well I guess I could possibly be back in Victoria by the new year.

Yeah!

That's all for now. I feel like crap so I'm going to go lie down and nap before bedtime... if that makes any sense.

Thanks for reading,

Christopher

The Tough Times

I knew as I wrote my last blog post that the hard times were still to come, but nothing prepared me for this kind of fatigue and stomach pain. Having said that, I think I have been very lucky so far in terms of not getting a lot of the possible side-effects (so far), so I am thankful for that.

 Day +5 (Dec. 15) 

White Blood Count....................0.1
Hemoglobin..............................108
Platelets....................................71
Monday started out as another "OK" day. I was definitely feeling fatigued from the moment I woke up in the morning, but it wasn't bad. My stomach cramp issue was bearable because the doctor had started giving me Buscopan - an antispasmodic medication. It was a good day to be feeling alright, because my two friends Brad and Anna took an early morning Harbour Air flight from Victoria to visit me!

Brad and Anna also hung up some sweet prayer flags that they had made on the weekend with some of our other friends... so thanks, Brad, Anna, Jordie, Nicole, Jasmin, and Maddie... and Wes for the rap he wrote and performed as a video for me. You guys are the best group of friends a guy could ever need!!

Kaitlin also came up in the morning, so we had quite the party going on in my hospital room.

After a great morning hanging out and lunch, it was time to say goodbye to Brad and Anna. The timing of this couldn't have worked better because my stomach and bowels were really starting to hurt from eating lunch.

Kaitlin stayed around until the evening and we did some laps and had a much-needed nap together.

Monday evening was when things started to really go downhill. My bowel issues were getting worse, and the pain was so bad that the nurse had to give me some hydromorphone, which completely knocked me out for the rest of the evening. I did manage to walk 2.5 km throughout the day though, so that was good.

I woke up in pain several times throughout the night, and the nurses gave me more meds.

 Day +6 (Dec. 16) 

White Blood Count....................0.1

Hemoglobin...............................99
Platelets....................................40

I got some sad news today: Kaitlin had come down with a cold. So she's hanging out in Langley with my parents, having taken the last week off school before Christmas, unable to visit me. Let's hope that clears up soon!

I spent my entire day sleeping today, waking up periodically moan for more hydromorphone. The stomach/bowel pain was right up there with the pain I had when my tumour started breaking down this fall - I'd give it a 9/10 with 10 being the worst pain I've ever felt.

Jean came by with some soup and muffins for lunch but I didn't have much appetite for it.

In the afternoon I started to feel "chilled" so I took my temperature. Oh great - it was 38.3°C. As per the protocol, I had to give a urine sample, central and peripheral blood samples, and get a chest x-ray. I was then started on IV antibiotics. The doctor isn't expecting that anything will come back positive for infection, which is good news. Apparently it is quite normal to get a fever as the body responds to the chemotherapy and transplant process. Let's hope that's the case, anyways!

The rest of the evening went by in a daze and I was in bed by 9:00 PM. I only managed to walk 0.5 km today, which is 4 laps of the ward.

 Day +7 (Dec. 17) 

White Blood Count....................0.1
Hemoglobin...............................93
Platelets....................................14

Today has been the same as yesterday, so far. I am exceedingly fatigued and achy, due to my low blood counts and I am so cold from the fever which is currently at 39.4°C (almost 104°F). Most of my morning has been spent sleeping, but I did manage to get up and do two laps of the ward - 0.25 km. My nurse took this pouty picture for me.

Today I will receive a blood-transfusion for my platelets. Normally they wait until they get below 10, but since I have a fever the protocol is below 20.

Today I will also begin receiving G-CSF (Neupogen) shots to stimulate my bone marrow to begin pumping out some new blood cells. Hopefully those stem cells are sitting in there ready to go, and the G-CSF istimulates my bone marrow quickly!

Today was also the day that my hair started falling out in chunks, so at shower time I took the electric trimmer to my beard to it wouldn't get patchy as it falls out. The hair in the picture I just pulled out of my face with my fingertips - so easily!

That's all for now. I anticipate the rest of today will be spent sleeping, with periodic one-lap walks around the ward. It took me a LONG time to write this, so thanks for reading it.

Christopher

Transplant Day +3 & +4

Yesterday was my hardest day so far. I felt so tired from the moment I got out of bed in the morning, and with the tiredness came boredom and a heavy depressed feeling, crushing my entire soul.

The frustrating thing about being so tired and "chemo-brainy" is that it's hard to focus on anything which means books and movies are out. It was also the first day I didn't have any visitors until Jean came for supper and I think I just had too much time alone with my thoughts.

Yesterday evening I also started to get a lot of stomach pain, cramping, bloating and nausea. I didn't get sick or anything, but I felt pretty darn close, so the nurses gave me anti-nausea medication through my IV line.

This has continued throughout today as well.

It seems like anytime I eat something, within about 15 minutes I will start to feel sick, bloated, cramped, and gross - like my stomach is shouting "RED ALERT: WE DON'T HAVE THE CAPACITY TO DEAL WITH FOOD RIGHT NOW! ABORT! ABORT!"

My food is staying down though, so at least I'm getting the nutrition my body needs.

Today has been a better day as far as where my mind is at. I still feel really tired and headachy with bouts of bloating and nausea, but today was the day Kaitlin came!! She was able to get time off work for the last week of school and will be staying at my parents' house in Langley so she can visit me every day until I get out of here. Seeing Kaitlin walk into my room this morning was one of the best feelings I've ever had in my life and I was on the verge of tears as I hugged her. What an incredible sense of relief. I love you so much, Kaitlin!!

The day was still pretty low-key of course. We talked for awhile before eating lunch, and after some laps around the ward, we snuggled up in bed to watch The Polar Express. That lasted about 20 minutes before we both fell asleep. Like I said before - What would you expect when you put a stem cell transplant patient and pregnant lady together!?

Kaitlin left in the late afternoon to head back to my parents' house, and since then I have walked a few more laps, put up some Christmas window stickers, and eaten dinner. I'm still feeling pretty tired and my bowels are not happy, but all-in-all I am still hangin' tough.

Tomorrow not only will Kaitlin be here again, but my two good friends Brad and Anna are coming over from Victoria to visit me for the day as well! SO EXCITING!

 Some Blood Stats 

WBC Normal Range....................4.0-10.0
Hemoglobin Normal Range.......133-165
Platelets Normal Range.............150-400

Note: My hemoglobin was already a bit low going into this, due to the GDP-R chemo I did this fall.

DAY -6 (CHEMO)
White Blood Count...................?
Hemoglobin..............................?
Platelets....................................?

DAY -5 (CHEMO)
White Blood Count....................6.5
Hemoglobin..............................118
Platelets....................................255

DAY -4 (CHEMO)
White Blood Count....................7.2
Hemoglobin..............................115
Platelets....................................263

DAY -3 (CHEMO)
White Blood Count....................5.0
Hemoglobin..............................109
Platelets....................................244

DAY -2 (CHEMO)
White Blood Count....................4.0
Hemoglobin..............................109
Platelets....................................218

DAY -1 (CHEMO)
White Blood Count....................3.2
Hemoglobin..............................118
Platelets....................................239

DAY 0 (TRANSPLANT)
White Blood Count....................2.9
Hemoglobin..............................113
Platelets....................................212

DAY +1
White Blood Count....................5.1
Hemoglobin..............................103
Platelets....................................239

DAY +2
White Blood Count....................2.2
Hemoglobin..............................108
Platelets....................................180

DAY +3
White Blood Count....................0.4
Hemoglobin..............................117
Platelets....................................185

DAY +4
White Blood Count....................0.1
Hemoglobin..............................114
Platelets....................................119

As you can see, the chemo is quickly killing everything off. And at the same time this is happening, somehow my new stem cells are making their way back into my bone marrow where they will eventually begin to become new blood cells. I've been asked why the chemo doesn't kill the stem cells in the process too, and I have NO idea.

That's all for now. The only other thing to report is I am still meeting my goal of walking at least 5 km per day and have now walked a total of 55 km, or 440 laps. I'll probably get up to 56 km before bed tonight.

Thanks for reading,
Christopher

Transplant Day +1 & +2

I should preface this post by explaining the title because I don't think I have done that yet. The days of chemo leading up to my transplant are written as "Day -6, -5, -4, -3, -2, -1," the transplant was "Day 0," and the days following the transplant are written as +1, +2, etc.

Yesterday (+1) was about the same as any other day so far, except I was definitely starting to feel more fatigued. Jean came and hung out with me for a good chunk of the day again, and I also had a nice morning visit from Maddy (thanks for the yummy stew) and an afternoon visit from Liz (thanks for the snacks and presents).

I managed to walk another 7 km yesterday, bringing my total up to 40 km - or 320 laps of the BMT unit. One of the nurses told me last night that they have nicknamed me "The Walker." Jean said that was better than "The Streaker," so I guess I've got that going for me!

Today (+2) I have been absolutely exhausted and my brain is mush. My blood counts are all still just on the lowest side of "normal" range but are going down quite quickly so the fatigue is to be expected.

The day has been decent so far though, for what it is. After breakfast I walked 1 km and then fell asleep for an hour or so. I was woken up by a total surprise visit from Ashley and Trent, who brought me coffee and a wonderful hour of catching up on life. Thanks, you two!

Jean came by again as well, and brought me some homemade muffins and soup for lunch. She has come to visit me every day this week (with food) since arriving in town from Edmonton on Tuesday. Best sister ever!

After lunch, Jean and I did some walking laps before she headed out. I felt extremely tired and dazed by this point so I slept for a couple hours before waking up and doing some more walking (err... shuffling by this point) around the unit. I'm getting slower, but so far I have done 4 km today so I should be able to hit my daily goal of 5 km by bedtime, no problem. 

I know walking is the best (and pretty much only) exercise I can do right now but man am I wishing I could hop on my bike or pick up some barbells because I feel so weak and out of shape. 

All in good time I suppose.

So that is about it for today. The doctors and nurses seem to be very satisfied with my progress thus far, so I guess I will just keep shuffling along until something happens or I get sent home.

Thanks for reading,

Christopher

The Beginning of "Chris 2.0"

 Hospital Days 5-7 

There isn't actually a ton to report from the last few days. Since my last post on Sunday, I've just been going through the daily, fairly boring routine of living in the hospital. I had three more chemo infusions on Monday, and one more (my last one) yesterday. The side effects haven't been too bad so far - I've been getting pretty tired in the afternoon and evening each day, I feel kind of crappy, and my brain is a little bit "mushy," but so far that's it. I'd say it has been pretty comparable to the other two chemo regiments I've done in the past - CHOP-R and GDP-R. I know it's going to probably get worse soon though, because my blood counts are falling more and more each day. It is kind of weird just waiting for something to happen, but still feeling "OK" right now.

In terms of staying active and moving, I have been doing very well. As I mentioned in my last post, I measured out how many times around the ward I need to walk to do a kilometre, and I have been tracking my progress diligently, aiming for about 5 km per day. As of tonight, I have walked 31.5 km in that same damn circle, which is 252 laps. I know my body will start slowing down in the coming days and weeks, but I'll see if I can get up to 50 km before I'm eventually discharged.

I have to say a HUGE thank-you again to everyone - family and friends - who have been coming to keep me company and bring me real food. Since the weekend, I have had so many people drop by to visit, and I don't think I am exaggerating to say that it has been life-saving. Maintaining my sanity and positive outlook would be next to impossible if I was alone the whole time, so thank-you all for your love, support, smiles, stories, company, time, homemade meals, and everything else you've given me. I sure am one lucky guy, and you are all the reason that I am still smiling. Thank-you. Thank-you. Thank-you. Here are a few pictures. I forgot to snap them with Christina, Katherin, Jean, and Sara, but that just means you will all need to come back a second time!

 Stem Cell Transplant 

Today was the big day - the whole reason I am here - I had my stem cell transplant this afternoon! Okay, okay, it was actually not that eventful, but still pretty important. Here's what happened:

Starting this morning I was given two IV infusions of a steroid as I went about my business. Then at 2:00 PM I was given a large IV dose of Benadryl. The stem cells are mixed with a preservative, and there is a slight chance that the preservative can cause a severe allergic reaction so those infusions were as a precautionary measure.

At 2:30 PM I had to lie in my bed for the transplant. My frozen stem cells were thawed down the hall, and then brought quickly into the room and hung from my IV pole. My nurse and doctor were present the entire time to monitor me, and my blood pressure, blood-oxygen, and temperature were taken every few minutes. As the stem cells went into me I felt a bit of a warm flush in my face and chest, but it was mild. I also felt the slightest bit nauseated but not enough to mention it. The whole thing took about 45 minutes, but I fell asleep after about 10 minutes because of the huge dose of Benadryl.

After the stem cell infusion was complete, the nurse woke me up to check my vitals every 15 minutes for two hours - again, as a precautionary measure.

I am currently still pretty "out of it" due to the Benadryl, but between sleeping and getting my transplant, I had a nice visit and supper with my sister Jean and her friend Sara who were here the whole afternoon.

So that is that! I literally just had a bag of my very own pre-harvested stem cells infused back into my body! A pretty simple process for an amazingly complicated procedure. The doctor told me that there were approximately 600 MILLION stem cells in the bag, and they will go through my bloodstream and "find their way" back to my bone marrow where they will turn into new cells and essentially reset my system to one that hopefully doesn't make any more cancer. The craziest thing is that science still doesn't have a 100% understanding of how the whole process actually works... they just know it can!

Now the waiting game begins. The next week or so is when the cumulative effects of 6 days worth of chemo will really start to wreck me. I will get very tired and very sick. My blood counts will drop to the point where I will need transfusions, and there is a high chance that I will get an infection of some sort, and require IV antibiotics. But in 2-3 weeks the whole process should be over, and I will be able to be discharged.

Two weeks from today is Christmas Eve. Let's aim for that?

Thanks for reading,
Christopher

Hospital Days 1-4

Overview 

I started my 6 days of high dose chemo infusions on Thursday morning, the day after I was admitted to the hospital. It wasn't too bad at first, but I am definitely starting to feel worse each day and I am dreading what's to come. Apparently later this week and onwards is when I will start to get really sick from the chemo. This is when I will require blood transfusions and antibiotics to keep me alive.

I had chemo on Thursday morning at 10:00, and then from Friday to Monday (tomorrow) they are at 10:00 AM, 11:00 AM and 10:00 PM. I have one infusion on Tuesday but I'm not sure what time it's at.

In "technical" terms, I am on "Day -3" right now as far as my stem cell transplant is concerned. The transplant will happen this coming Wednesday, and as exciting as it sounds, it is actually just another blood transfusion that happens to be my own stem cells that were collected a couple weeks ago.

I am stuck in my ward on the 15th floor of the hospital, and I'm not allowed to leave because of how immunocompromised I will soon become. I am craving fresh air, but it is still several weeks until I will be able to get any. The air vents in the ceiling have special filters and none of the windows open. I know this is to protect me, but it feels so dry and stuffy.

Every time I pee, I have to go into a special cup in my bathroom and write down how much I went. The chemo I am getting can damage my kidneys so the nurses need to constantly monitor my fluid intake and output. I receive an IV fluid drip (saline) 24/7. It pumps about 125ml into me every hour so needless to say, I have to pee a lot. Combining the IV drip with all the water, milk and juice that I drink as per usual, I've been outputting at minimum 3 litres every 12 hours!

The nurses and doctors that have dealt with me are all really nice. A couple of the nurses have been incredible - not only taking good care of me, but sometimes lingering to chat and constantly making sure I have everything I need. One of them even goes down the road to Starbucks and gets a latte for me on her morning break!

It's been nice getting to know some of the other patients too. We're all in the same boat together, and everybody seems to always have a smile when I pass them in the hallway. One of the guys I've chatted with a few times shuffled into my room to bring me a fruit smoothie this morning.

 Timeline 

WED, DEC. 3RD - My parents dropped me off and helped me settle in at the hospital in the afternoon but nothing really happened for the rest of the evening. My nurse gave me a little orientation, and after a disgusting supper I watched some TV and eventually went to bed around 10:00 PM. I didn't have a very good sleep because hospitals are noisy places. There is a loud ceiling fan above my bed, and the nurses were constantly coming and going to check on my roommate on the other side of the curtain.

THU, DEC. 4TH - I got up at 6:00 AM when my nurse came to check my vital signs.

There is an old exercise bike in the hallway outside my room, so I began my day with a 30 minute ride, feeling pretty good! I followed that with a shower (down another hallway with a sign-up sheet on the door) and at 9:00 AM it was breakfast.

At 10:00 AM I was hooked up to my IV tower via the Hickman line in my chest, for my first chemo infusion. I am permanently attached now, and the only time I get unhooked is when I want to have a shower. My first chemo infusion began but it didn't really affect me. I did a few walking laps around the ward, played on my computer, and at 1:00 PM it was lunch.

After lunch I started to panic. Not only was the food gross, but it wasn't staying with me and I was beginning to get very hungry! I put out a call for help on my Facebook page, and in the mid-afternoon my friend Christina came by with a giant burrito, a card game, and a book. What a lifesaver! After she left, it was suppertime but thankfully I was so full I didn't actually need to eat much.

My parents and two friends, Ashley and Amanda came by to hang out after supper. They brought me snacks and it was a nice finish to the day to see some more familiar faces!

I went to bed around 10:00 PM and had a better sleep due to my earplugs and a sleeping pill.


FRI, DEC. 5TH - I woke up at 6:00 AM again, when the nurse came to check my vitals and draw some blood. This is how my days always start. In fact, this happens multiple times throughout each day.

My morning was pretty much the same as Thursday - I went for a 30 minute ride on the exercise bike, had a shower, and then it was breakfast. At 10:00 AM I was given my first of three chemo infusions of the day, which wasn't very eventful. The nurse just hangs the chemo bag on my IV pole with all the other bags, and I continue with my daily business.

Today I wanted to find out how many laps of the ward I would have to walk to do a kilometer, but nobody seemed to know. Good thing being here is all about finding creative ways to fill the day: I did ten laps, counting my paces each time around, and figuring out the average. Then I found a straight hallway, and did some math to figure out the length of my average pace. I'll spare you the rest and let you know that if I do 8 laps of the ward, it is 1 km. I had kept track of my walking from the day before so I was able to figure out I had done 4 km. Today I did 3.5 km.

Keeping moving as much as possible is extremely important. It will help me get better faster than if I just lay around in bed, and can help to prevent nausea, and constipation, as well as circulation and lung problems.

My friend Kelli came by for a visit on Friday morning, which was really nice! She brought me a basket full of fresh fruit, snacks, and a copy of GQ Magazine, and helped me hang some Christmas lights up in my room.

The light-hanging was hilarious. I wanted to reach the roof, so I was balanced precariously with one foot on the arm of my chair and the other foot on top of my headboard when a nurse walked in, looking absolutely shocked. She stammered for a few seconds and then managed to get out - "I have a feeling you're going to do this even if I tell you to stop, aren't you?" I confirmed that her thinking was indeed true, and so she held the chair for stability and closed her eyes so she wouldn't have to watch. The end product looks pretty good though!

On Friday afternoon my parents came to visit. They left around suppertime and drove to pick up Kaitlin at the ferry, bringing her back to the hospital for a short evening visit. This point was when I was starting to begin to feel a bit draggy from my two days of chemo, so after we said our goodbyes I was in bed by 9:45 PM.

SAT, DEC. 6TH - I woke up at 6:00 AM again (vitals check and blood test) and after a banana and some mixed nuts, I did half an hour on the exercise bike. At 7:30 AM I had a shower, and at 9:00 it was breakfast. I went for a walk around the ward and at 10:00 it was time for some more chemo. 

Kaitlin spent the day with me on Saturday, and it was so nice to have her here. We cut out some paper snowflakes to hang from the ceiling, had lunch together, and watched the movie Elf. Oh yeah... and of course we did lots of walking laps around the ward - I did 5km in total.

It was hard to say goodbye to her at dinnertime, especially since I was starting to feel even crappier from the chemo, but I was able to go to bed happy that she would be back in the morning.

SUN, DEC. 7TH - Oh hey, that's today! I was awoken (as usual) at 6:00 AM for my vitals and blood test. Unfortunately I wasn't feeling up to a ride on the exercise bike so I fell asleep again until 7:30 and then had a shower. At 9:00 AM it was breakfast, and by mid-morning, Kaitlin was back for a visit. I can't even describe how much better I feel when she is here! We had a homemade lunch together, did some walking laps, cut out some more paper snowflakes, spent some time talking, and squeezed onto my tiny hospital bed for an afternoon nap together. Hey - that's what happens when you put a cancer patient and a pregnant lady together, right!?

Kaitlin had to leave by 2:30 PM to catch a ferry back to Victoria, but she will be back next weekend, and will be staying with my parents in Langley and visiting me here until I eventually get discharged. I hope this week goes by as fast as possible because all I want is her to be back here with me. I love you so much, Kaitlin Poynter!!!

Oh check it out - I had an afternoon visit from another Kaitlin today! I haven't seen this one since our UVIC graduation in 2012, so trading some stories and catching up was a lovely time. She also brought me some delicious food and saved from yet another nasty hospital meal. She also beat me at a game of cards.

I guess that's about it for now. I haven't gotten sick or nauseous from the chemotherapy yet, but as I mentioned, having it for 4 days in a row has begun to make me feel pretty crappy. I have a constant headache and tiredness weighing down on me, and I just feel kind of gross all the time.

I'd like to say a big thank-you to all the lovely people who have stopped by to visit and bring me food so far. Being here alone is tough, so having friends around is extremely helpful in terms of cheering me up and making each day go by faster.

 Some Stats So Far 

Distance Walked............................15.5 km
Stationary Bike.................................1 hour
Chemotherapy Infusions.........................10
Remaining Chemo Infusions....................4
Days until Transplant...............................3

That's all for now. My eyes are closing and I need to brush my teeth and head to bed soon.

Thanks for reading,
Christopher

Hospital Admission... At Last!

I was finally admitted to Vancouver General Hospital this afternoon. I will start my BEAM Chemotherapy tomorrow, and it will continue for six days. Next Wednesday I will receive my stem cell transplant, and then I will have 2-3 weeks of recovery here in the hospital. After that, there will be 7-10 days where I will be required to return to the hospital every day or two for tests.

I will do my best to update this when I can. Please continue sending me all your positive energy, well-wishes, and prayers!

Thanks for reading,
Christopher

Still Waiting

It has been one week now since the day I was "supposed" to be admitted to the hospital to start my high dose chemo and stem cell transplant, but they still don't have a bed for me. To say the wait is frustrating would be a gross understatement. Getting in and out of there before Christmas isn't looking very likely at this point.

I really feel the itch to run and lift some weights, but I'm not allowed to do much more than walk for exercise because of the damn Hickman line hanging out of my chest. I walked 8 km today.

Kaitlin came out to visit me at my parents' house for the weekend which was nice. We went into Vancouver to check out the Christmas market. Mmmmmm... bratwurst and mulled wine!

Hickman Line Insertion

Just a quick update today: I had my Hickman Line "installed" yesterday at Vancouver General Hospital. It has three lumens - one for chemo, one for beer, and one for coffee. This is a picture of me trying out the coffee hose.

I am playing the waiting game now. The hope was that I would be admitted to the hospital immediately following the Hickman insertion, but there was no bed available.

I will write another update once I am in the hospital. I really hope I get admitted within the next day or two so I can be out by Christmas!!

Thanks for reading,
Christopher

LP Headache Update

My headache got a lot worse yesterday. The fact that this was day 9 was pretty worrying, so I decided to drive myself to the ER at Vic General around lunchtime. By the time I got there the headache was so bad that I was squirming in the chair at the admissions desk, and my blood pressure was 200-over-something. They got me into a bed within about three minutes, and after telling the ER doctor what was going on I almost immediately fell asleep, presumably from the exhaustion of so much pain and stress.

About half an hour later an anesthetist came to introduce himself, and explained that he would be giving me an epidural blood patch, whereby he would draw approximately 20cc of blood from my arm and inject it near the site of my lumbar puncture. The purpose of this is to "plug" the hole from the LP, and restore the spinal fluid pressure, since the pain was caused by my brain "sagging" due to the spinal fluid leak.

The procedure took about fifteen minutes, and afterwards I was instructed to lie flat on my back for while they monitored my blood pressure and pulse. I fell asleep again but woke up several times when the blood pressure machine kicked in. Each time the numbers came up on the screen they were lower, so that was good!

After an hour I was allowed to leave, and lo-and-behold, when I stood up and walked to the car, my headache was gone! The only thing that remained was a very stiff lower back, but that was an acceptable trade-off for the severe debilitation that had taken over my life for the past nine days.

I am frustrated a great deal by these events. Not only because I was immobile for more than a week (during a time when I was planning to exercise to prepare for my stem cell transplant) but also because when I was at Vancouver General Hospital on Thursday for my stem cell collection I asked about an epidural blood patch and was told "Oh we've never really done those here, but keep lying down and if your headache gets worse when you're back in Victoria definitely go to the emergency room."

Don't get me wrong - the nurses and doctors showed great concern for my headache, but short of giving me pain meds (which didn't help) they were unable to offer any solution.

It is also important to note that as a chemotherapy patient I am at a much higher risk of developing deep vein thrombosis. It's important that I move around and walk as much as I can to minimize the risk of a serious blood clot, so the fact that I spent the greater part of 10 days lying flat on my back was a pretty bad move. But what can you do when lying flat on your back is the only reprieve?

The anesthetist in Victoria told me that it's unusual for an LP headache to persist beyond 2-3 days, and if it does, the standard procedure is a blood patch. He seemed a bit surprised that nothing was done on day 7 when I was in Vancouver.

So now I am left wondering why I was given an LP in the first place if the hospital had nothing in place to deal with the consequences of an extended spinal fluid leak. Going through something like that for nine days is completely unacceptable.

LP Headache & Stem Cell Collection

Remember in my last post how I mentioned that I had a lumbar puncture last Thursday to find out if the cancer had spread to me central nervous system? Remember how I said it was a "relatively simple procedure?" Well, it turns out that just because a procedure is simple, doesn't mean the it will be free of side-effects!

On Saturday evening I was at a little going away party with my friends, and I started to develop a headache. Whatever, right? Well it got so bad that I had to lay down in the car on the way home while Kaitlin drove because I thought I might lose my dinner.

Since then, the headache has been the bane of my existence. It is so debilitating - a throbbing, stabbing, pressing feeling - like a demon is trying to push its way through my eyeballs. I've never had a migraine but I now have sympathy for people who have to deal with them because I imagine this is quite similar. The only thing that eases it is if I lie flat on my back.

Apparently this headache is quite common after a lumbar puncture. You'll recall that the doctor removed some of my spinal fluid, which means that there is now a pressure imbalance in my head because the brain is normally floating in this fluid. When I sit or stand, a tiny bit of fluid is likely still leaking out the hole from the procedure as well, which means the only way to "fix" it is to lie in a supine position. Nothing else works. I've tried every combination of painkillers, coffee, and steroids, and they do absolutely nothing.

The frustrating thing is that when I lie down the headache resolves itself quite quickly, and then I want to get up and do stuff, but if I do it comes roaring back. This made driving to the mainland on Wednesday, and sitting in morning rush hour (between my parents' house in Langley and Vancouver General Hospital) yesterday morning a couple of excruciating experiences. I had to pull over to the side of the road a few times and go lie down in the back seat.

I am hoping the headache resolves itself today. The doctor told me yesterday that they usually resolve after 24-48 hours, but it's not unheard of for it to last up to two weeks.

In other news, I went for my stem cell collection yesterday. Again, it seems like I am "that" patient. You know, the one who has all the little hiccups along the way. As soon as the nurse looked at the veins in my arms she said "We can't use these. There's nothing here." I know that chemotherapy can kind of wreck a person's veins, but come on!!

To make a long story short, I was sent downstairs for a little surgical procedure where a temporary line was inserted in the side of my neck, down my jugular vein, right up to my heart. Gross hey? It was a pretty simple procedure though, and the doctor put some local freezing in my neck so it didn't hurt or anything.

Once that was done, I headed back up to the 6th floor to begin the stem cell collection... two hours late, at 10:30 AM.

I've included a little video here where the nurse kindly explained the collection process, but basically I was hooked up to a centrifuge machine for six hours. It sucked my blood out one line, separated my stem cells, and pumped the blood back into me through the other line... over and over and over! Pretty neat, hey?



People often need to return one or two more times because the machine didn't collect enough stem cells, but luckily at 4:30 PM the results came in and I was good to go! I decided that since I wouldn't need to return to the hospital until Monday that I would bust my buns back to Victoria to spend one last weekend with Kaitlin.

So here I am, lying on the couch, hoping that when I stand up my headache will be magically gone, because all I want is two more days of quality time with my wife before I go away to Vancouver and become a vegetable for five weeks!

Thanks for reading,
Christopher

MORE TESTS!! NEW DIAGNOSIS!! PREGNANCY!!

  MORE TESTS  
It has been a week and a half since my last post (not including my daily video check-ins) so here we go with another update:

First off, I got the heart test results from November 4th and... well... I have a good strong heart!

I also got the CT scan results and they showed my tumour has shrunk quite a bit which is great news. Remember that I don't need to be in complete remission before my stem cell transplant, I just need to demonstrate chemo-sensitivity, i.e., that the chemo actually does its job.

I am still waiting to see the results of my pulmonary function test, but I'm not worried about that one. The doctor who performed the test made several comments about me having good lungs.

On November 6th I had a dental consult. This is to identify potential sources of infection like gum disease, tooth decay, tooth abscesses, etc. because any of those things could lead to a bacterial infection which could spread to my blood while I'm immunocompromised. They should have just phoned my regular dentist and saved me a trip into town though. Even I could have told them my mouth and teeth are perrrrrrfect! ;)

Remember that all this was happening in the days following my Monday November 3rd chemo session, so in terms of how I was feeling - well - I was slowly on the mend. By the weekend I was well enough to go for a hike with my brother Jeff and my buddy Brad.



This past week was quite busy with more tests and appointments:

On Monday I went over to Vancouver for another appointment with the stem cell doctor. Nothing to report from that. It was an 11 hour travel day, for a 15 minute appointment.

On Tuesday I had to do a 24 hour urine collection which is exactly what it sounds like: I had to pee into a container every time I went potty and then bring it into the hospital lab on Wednesday.

On Wednesday I spent my morning in the hospital getting bloodwork done, as well as having an ECG of my heart, and a chest X-RAY.

On Thursday I went to Vancouver (again) and had a Lumbar Puncture. This was a relatively simple procedure where the doctor (using local freezing and a needle) withdrew some spinal fluid and replaced it with a small amount of chemotherapy. The purpose of this was to make sure my cancer hasn't spread to my central nervous system. Luckily, I found out, it hasn't.

On Friday I met with the apheresis doctor in Vancouver. She is the one who is in charge of my stem cell collection procedure next week. She went over the whole thing, answered questions, and checked my veins to make sure they were adequate for the procedure. She also discovered some blood clots along one of my superficial arm veins, which is not the best of news. I have to try to get rid of them using a warm compress and some local inflammatory drugs, and hope that they don't begin to appear in other deeper veins.

As I mentioned in my last post, the purpose of all these tests is to make sure my body can handle the stem cell transplant. So far, so good!


  NEW DIAGNOSIS  
My oncologist phoned me last week to give me some interesting news. You may remember that two years ago I was diagnosed with PMBCL which is a type of Non-Hodgkin's Lymphoma. We assumed this was a relapse, but my biopsy from September has shown otherwise. I now have Hodgkin's Lymphoma, or more specifically, Nodular Sclerosing Hodgkin Lymphoma. There seems to be some uncertainty now about how this is related to my last cancer, but my oncologist said that the pathologist sent everything to someone else in Vancouver for a second opinion. According to my mom's research, PMBCL and HL are closely related and people who get one will sometimes have a "relapse" where the other one appears. This change in diagnosis will not affect my current treatment plan, and my outlook is apparently still the same. It is still interesting though!



  PREGNANCY  
We found out in September that the high dose chemo and stem cell transplant would likely leave me infertile. This was a pretty big blow because we were planning on starting a family sometime next year.

With only a couple weeks to go before I started chemo, we went to a fertility clinic where I gave some samples to freeze for later use. Then we had a discussion about how expensive it was, and how much it's going to cost to use those samples in the future. We decided that perhaps we should try to squeak one in naturally before I started chemo.

We literally had one weekend for this to work.

And what do ya know... it worked! Kaitlin is pregnant, and due on May 22nd, which is my 30th birthday! This is such exciting news for us in the middle of an extremely trying time in our lives, and it gives us something incredible to look forward to in the Spring. Not only that, but we still have my samples in storage at the fertility clinic for if and when we ever want a second child.

At times it has been somewhat tricky to navigate the waters of pregnancy hormones and tiredness vs. cancer stress and chemo side effects, but overall it was a pretty smooth first trimester. Hopefully it continues that way!

That's all the updates for now. I am heading to Vancouver next Wednesday and will be there until after Christmas, so the next few days will probably be quite busy preparing for that. I will likely do another post next weekend, after my stem cell collection on Thursday.

Thanks for reading,
Christopher

Chemo Cycle 2 Video Check-Ins

I got to thinking that all the videos I've been posting on Facebook and Instagram lately have been made to show what I look like when I'm feeling good - doing pushups and being silly and showing off and stuff. I thought that maybe people would want to see the other side of things, i.e., what I look and feel like in the days immediately following a chemotherapy session, so I made some little video check-ins. The check-ins run from October 27th to November 7th, and I had chemo infusions on the first and eighth day.

You can navigate to all the different clips by clicking the "PLAYLIST" button on the top left of the video box below, or if you hit the play button it will automatically go through all of them.

Vital Organ Test Day 1

Today I spent a good chunk of my time at the hospital getting some tests done in preparation for my stem cell transplant. Since the transplant is an extremely intensive process, the doctors need to make sure that my body will be able to handle it, which I'm sure isn't going to be a problem given my age and overall health.

The first test I had was an RVG Scan of my heart. Click that link to learn more - it's super interesting stuff! Basically the technician took a sample of my blood, mixed it with a radioactive tracer, and then injected it back into my vein. I lay in a machine that looked a bit like a CT scanner, and a special gamma camera took pictures of my heart by detecting the radiation given off by the tracer. I was also hooked up to an electrocardiogram, which monitored my heart rhythm and synced it with the images. I wasn't able to view it because of dumb hospital protocols, but the technician said the pictures they get at the end are essentially like short time lapse videos that show how my heart pumps my blood. See, I told you it was cool!

The next test I had was a CT scan of my neck and chest. I've had lots of these before, but I am eager to get the results because it will show if the chemo has actually been shrinking my tumour this whole time. Please keep your fingers crossed, because my tumour's response to chemotherapy is a big determining factor in whether or not my transplant is going to be successful.

The final test I had today was a Pulmonary Function Test. I sat in a glass box for about 45 minutes and did a bunch of breathing exercises into a hose hooked up to a computer. It was pretty neat because the computer was actually right in front of me so I was able to see a realtime graph of my breath! The good thing about that was I could mostly understand what I was seeing and my lung function is great. Being a trumpet player has paid off I guess!

These were just the first of several more preparation tests I will need to do in the next two weeks. I still have to go for a chest x-ray, a dental consultation, another heart test, a 24 hour urine test, more blood work, and a lumbar puncture.

I had my "Cycle 2 Day 8" chemo infusion yesterday, but I've been feeling alright for the last couple days. Don't forget to go take a look at my video check-ins on YouTube to see how I'm doing on a daily basis.

Thanks for reading,
Christopher

Countdown to "CHRIS 2.0"

My parents and I went to meet my stem cell transplant doctor for the first time on Tuesday. Even though I've been dealing with the whole "cancer thing" for awhile now, the meeting felt as overwhelming as the first time I met my oncologist in 2012.

My prognostic markers are all favourable, which is great news: 

• The period of "disease control" was 2 years. This means that after my six cycles of chemo in 2012, it was nearly two years before I relapsed. Anything more than one year is good news.
• Even though I have only had one cycle so far (stupid low neutrophils) I have shown a good response to the chemo this fall. My cough is gone, my wheeze is gone, and I can't feel a tumour in my chest anymore. If I was not showing a response to this chemo, my transplant would likely fail.
• I am young and healthy. If I wasn't, the transplant could be less likely to work, or I could experience unwanted complications.

Taking all these factors into consideration, the chance of the transplant curing my cancer is somewhere between 50% and 60%. My oncologist had previously said that if the transplant doesn't work there would be other options we could explore, but the stem cell doctor expressed a much graver opinion:

"If you are not cured by the stem cell transplant, the mortality rate will unfortunately be very high."

It's very upsetting to take in something like that.

Since the meeting, I have talked to a few people who have reminded me that there are other options, that everyone is different and that I am not just "another statistic." Those things are ultimately what I believe as well, so I will continue to be strong and optimistic; however, the doctor's words are stuck in the back of my mind and probably will be for a long time.

At the meeting we also learned more about the process of my stem cell transplant. It is happening a lot quicker than I thought it would, which means I will have only one more cycle of my current chemotherapy before it begins. I was initially worried about this because the original plan was to do 3-4 cycles, but apparently my cancer does not need to be in complete remission before I do the transplant. What matters most is that my body shows a response to the chemo.

Here's a basic (tentative) outline of what's to come:

• Next week and the week after I will complete Round 2 of my GDP-R chemo at the Victoria Cancer Agency. Then I have some time to recover before my transplant.
• Starting the week of November 3rd I will need to have a bunch of vital organ tests done in Victoria. This is to make sure I don't have any major problems that could prevent me from having a safe transplant.
• On November 13th I will go back to Vancouver to meet the apheresis doctor. This is the person who will be in charge of collecting my stem cells before the transplant.
• On November 20th I will go to Vancouver again for stem cell collection. I will be hooked up to a cell separator machine via intravenous tubing. My blood will flow out of one arm to the machine where it will spin the blood around at high speed. The spinning separates the different components of the blood into layers based on their weight. The stem cell layer will then be collected and frozen for later use. The remaining blood will be returned to me via the other arm.
• On November 25th I will be admitted into Vancouver General Hospital.
• First, I have a Hickman line inserted. This is an intravenous device that is used to give fluids, blood transfusions, medications, and the stem cells during the re-infusion process. I will be given local anesthetic and a vascular surgeon will insert the line into a large vein in my chest. The intravenous tubing follows the vein all the way to my heart, and the whole thing will stay attached to me until a couple weeks after my transplant.
• On November 26th, I will begin my high dose chemo which is called BEAM. I will have infusions several times every day for six days. This chemotherapy will completely destroy my cancer. It will also destroy every blood cell in my body. Yes... every... single... blood cell.
• Within 24 hours of completing my high dose chemo, I will receive my stem cells back. This process only takes a few minutes and there isn't much to it.
• Because the high dose chemo will kill everything off, I will need to receive red blood cell transfusions and platelet transfusions. The risk of infection will be extremely high, so I may need intravenous antibiotics. As well as the usual hair loss, nausea, and vomiting I will also have mucositis, which is inflammation of the lining of the gastrointestinal tract all the way from my mouth to my derriere. Apparently this will be a real "shitty" time.
• I will then need to stay in the hospital for 2-3 weeks until my blood counts come up a bit, and I am eating and drinking and "well" enough to be discharged. I will need to stay in Vancouver for another week or so after this, because I will be going back to the hospital every couple days for follow-up tests.
• Sometime approximately 4-5 weeks after being admitted to the hospital I will be able to return home to Victoria to finish my recovery. I will be sick and fatigued anywhere from 3-6 months after my transplant, and it can take up to a year to feel completely normal again. Nah... forget that part... I'm usually pretty quick to get better! ;)
• At various points between three months and two years after my transplant, I will need to receive all my childhood vaccinations. Since the transplant is essentially a COMPLETE reset of my immune system, I will no longer have the disease immunity that I did beforehand.
• Three months after my transplant I will get a PET scan to determine if the cancer is gone. And then we will hope and pray that it NEVER COMES BACK.

To sum up: For five weeks, beginning at the end of November, I will go through a high dose chemo and stem cell transplant process that will eliminate my cancer and completely reset my immune system. By 2015 I will essentially be "CHRIS 2.0" .

And then I will have a long, tiring road to recovery.

That's a lot of writing... it's time to make dinner. Before I sign off though, I want to send out a big thank-you to my new cancer-fighting friend Samantha. She saw my story online and reached out to me when I was feeling super overwhelmed yesterday. She introduced herself on Facebook, asked for my number, and then took more than an hour of her time to pick up the phone and call me. There is nothing quite as inspiring as trading stories and sharing hopes and fears on the phone with a complete stranger. Thank-you, Samantha!!!

Christopher

Stem Cell Transplant

I was in Vancouver today to meet my stem cell doctor for the first time. Information overload. I will write a post about it tomorrow!

Chemo Postponed... Again!

Kaitlin and I were on our way to the cancer agency this morning for my second cycle of chemo when one of the pharmacists called to tell me that she was looking at my blood work from yesterday and my neutrophils were still too low to have chemo; in fact, they were lower than last week - 0.45. I talked to my oncologist and he said that since my counts were evidently still going down, it would be risky to do chemo this week because it would increase the chance of life-threatening infections.

Just like last time, this means that I will need to start taking Neupogen each time I have chemotherapy. Oh well... I'm a pro at subcutaneous injections now.

The good news is that this part of my treatment (GDP-R chemo) is not the curative part, so needing to postpone it a couple times will (hopefully) not make a difference to the outcome. The main purpose of the chemo I am doing right now (errr... not doing...) is to shrink my tumour down to a point where the High Dose Chemotherapy and Stem Cell Transplant will be effective.

Another good thing is that this means I will be feeling good for the Light the Night Walk next weekend, but as I mentioned in my last post, the frustrating thing is my whole life is based around my chemo treatments, so when they change everything has to change... and not always for the better!

I am currently on the ferry heading to Vancouver. I will be meeting the stem cell doctor tomorrow so I will probably do another blog post this week once I have more information about that part of my treatment.

Here's a couple nice pictures of Kaitlin and me at the pumpkin patch this past weekend:

Thanks for reading,
Christopher

The Waiting Game

I went to the cancer agency at 9:30 AM to start my second cycle of chemo but the nurse told me my blood work from yesterday showed that my neutrophils were too low to proceed. They won't give you chemo if your neutrophil count is below 1.0, and mine were at 0.65. This happened last time too.

Anyways, they sent me across to the hospital lab for another blood test to see if my counts had come up at all since yesterday. I waited more than an hour to get it done. In that hour, they got through nine people before me. Oh wait... it wasn't even nine people, because a few numbers they called weren't even there! Seriously! A blood test takes two minutes!

Then Kaitlin and I had to wait another hour for the results.

At 1:00 PM a nurse came by and told me that my counts were actually even lower today than yesterday, so I would have to wait a week to start this cycle.  It was really frustrating to hear that, because my entire "regular" schedule (i.e. the rest of my life) is based around when I have chemo.

So now the plan is to go for another blood test next Sunday, and then start my second cycle of chemo on Monday. Then as soon as it's done, Kaitlin will drive me to the ferry, and my parents will pick me up on the other side. I'll spend the night at their place in Langley, and on Tuesday we'll go into Vancouver to meet the stem cell doctor for the first time.

Mom said "You're taking the ferry right after you get chemo? Make sure you bring a barf bucket!"

Thanks mom.

The only good thing from all this is that... well... now I have another week of feeling alright until I have to do chemo again. Even though my neutrophils are ridiculously low and I have no defence against infection (so I probably shouldn't go out in public) I still think I might get out and have some fun! ;)

Here is a hilarious squirrel photo I snapped yesterday. It's entitled "LOOK AT MY NUTS"

Thanks for reading!

Christopher

Pain, Fever, Rash, Two Trips to the Emergency Room, and Amazing Friends

It's been two weeks since I was released as an in-patient from the hospital, and a lot has happened in that time, in terms of side effects from the chemo. It has definitely been a different experience than last time. In fact, I think I told my parents at one point that I was having the "worst week of my life," and thinking back on it, I wasn't exaggerating. Here's a timeline of the last 14 days:

Wed, Sept. 24th - Sat, Sept. 27th
I had my "Day 1" of chemo in the hospital on Monday and Tuesday, because I had surgery on Sunday and they needed to monitor me. Kait's parents drove me home on Tuesday evening, and we had pizza for dinner. I was pretty out of it and only had the appetite for two pieces. If you know me, you'll know that is bad news!

The next four days were a blur of confusion and fatigue, which was about the same as when I was going through chemo two years ago. I didn't feel nauseas at all, but was very "out of it," and I didn't do much other than sleep and eat a little bit. My appetite wasn't too bad, but I definitely lost some weight.

When I'm in this state I hate being out in public. Kait says I don't seem that different that usual, but I feel different... and stupid. I had to take my car to the shop for an oil change and some brake repairs, and as I listened to the words come out of my mouth I felt like I was just babbling nonsense. The same thing happened when I ran into a couple people I know, at Thrifty Foods. I open my mouth to talk, and then I feel myself blushing because I am so self-conscious about how awkward and stupid I sound.

Sun, Sept. 28th - Wed, Oct. 1st
I woke up on Sunday morning with some pain in my chest. It was uncomfortable but bearable; however, as the morning dragged on, the pain got worse. Every time I took a breath it felt like what I imagine a broken rib might feel like when a person breathes. I complained enough about it that Kaitlin said I should go to the hospital. Not wanting to do that unless it was absolutely necessary, I phoned the hospital and asked for the oncologist who was on-call that day. She called me back within a few minutes and I described the pain, through slightly-gritted teeth. She said I needed to go to the emergency room because the pain could be a blood clot in my lung, and she would call ahead to make sure I could get in quickly without waiting.

At 1:00 I drove myself to the emergency room at Victoria General Hospital. When I got there, the nurse took all my vitals and I was sent for some blood work. Then I went to a waiting room and sat for awhile until another nurse checked out my vitals and said "now you get to wait to see the doctor."

I waited for awhile, until the doctor was able to see me. He took an ultrasound of my lungs and heart and said he didn't see anything alarming, but I would need to go for a CT scan. So the nurse put an IV line in my arm, and I had to wait some more.

Sometime around 5:00 I went down the hallway for a CT scan. Then I came back and waited some more.

After about an hour, the doctor came back and told me that my CT scan results were normal. He said that the only thing he could think of is that my tumour was breaking down quickly from the chemo, and basically tearing at the things it's attached to in my chest. He said that my CT scan actually showed a small decrease in the size of my tumour which was great news, but being in so much pain prevented me from really caring. Anyways, I was given a prescription for Tylenol #3, and sent on my way.

Total time in the Emergency Room: 5 hours. Result: T3s.

The T3s did absolutely nothing for my pain, and as the evening wound on, it got worse. I was at the point where I couldn't take more than tiny gulps of air because every time I took a breath it felt like I was being stabbed.

I didn't sleep, and Kaitlin said I was whimpering like a dog all night long. By Monday morning the pain was radiating to the left side of my neck, and down my shoulder. It was all I could think about. It was completely consuming. It was mind-numbing, vision-blurring, excruciating pain. I didn't care about anything else except for wanting it to stop. I have never experienced physical pain like that in my life, and it wouldn't go away.

I had my "Day 8" chemo on Monday morning, so Kaitlin drove me to the cancer agency. I told the lady at the front desk what was going on, and a nurse whisked us away to a private area where she checked my vitals, and got me to describe everything that had transpired over the last 24 hours. I saw TWO oncology doctors, who both looked at my blood test results and CT scan, and said everything looked normal and again - the only thing they could think of is that the tumour was breaking down, and irritating everything around it. One of them said that if the pain got worse (like that was possible) that I should go back to the ER, because the tumour-breakdown could possibly cause some internal bleeding. But for now, all they could do is help manage the pain.

I was given two shots of morphine, plus a prescription. I completed my chemo, and went home.

For the rest of the day and throughout the night I took as much morphine as I was allowed to take, and it numbed the pain slightly, but not much more than that. The oncologist phoned me in the morning to see how I was doing, and promptly upped my dose. Taking 15mg every three hours helped the pain a lot more, and I spent most of the day sleeping. I got up once and hugged the toilet bowl, but the nausea passed within 10 minutes and I didn't throw up.

I slept on-and-off throughout the night, but woke up on Wednesday morning tentatively feeling like the pain wasn't quite as bad. I took a slightly-smaller dose of morphine to "test the waters," so to speak, and lay around on the couch for most of the morning.

After lunch I started to feel a bit shaky and cold, so I took my temperature. I had a fever of 38.3°C.

Shit.

A fever indicates possible infection. Fever is concerning if it occurs at a time when the white blood count level is low (i.e. after chemotherapy) because during this time the body's normal defences against infections are down. An infection in this state can be life-threatening, because it can lead to sepsis. So even though my fever wasn't that high, I needed to go to the emergency room.

The emergency room is no fun, so I called the cancer agency first, just to make sure...

...and of course they made me go.

I have a "cancer patient" letter that gets me into the ER pretty quickly if I have a fever, so within 15 minutes of arriving, I was in an isolation room getting my blood taken, and vitals checked. Within 20 minutes of that, they had the results of my blood test. My white blood cell and neutrophil counts were high enough that if I did have an infection, my body would be able to fight it off as it normally would. The doctor told me that the fever could also be a side-effect from my chemo on Monday, but even if it is merely a side-effect, if it happens again I will need to go to the ER again.

Hopefully this doesn't happen every time!

Thu, Oct. 2nd - Wed, Oct. 8th
By Thursday morning my fever was gone, and my chest pain had subsided considerably. I took one morphine pill when I got up in the morning, and that was the last one.

By Thursday evening I had developed a rash on my thighs, waist, and back. I checked my chemo notes, and indeed, rashes are a common side-effect of Gemcitabine. I was feeling pretty out of it again, so I didn't do much on Thursday and Friday.

I felt half-decent on the weekend! We went for an early Thanksgiving dinner at Kait's aunt & uncle's house in Mill Bay on Saturday evening, and on Sunday we bought 25 lbs of apples at the Metchosin Apple Festival!

On Monday I felt pretty good so I did a tiny workout: 100 push-ups, 20 pull-ups, and 50 squats. It was pretty hard do even do that, (forget even thinking about lifting weights) but it felt good to be able to exercise at all.

On Tuesday morning I woke up feeling good, and thought I would attempt my regular 6km running route. I made it to 2km and felt like I was going to fall over, so I ended up walking a shortcut home. Total distance: 3km. Oh well.

I did have some fun yesterday...

As you may know, I got a music contract this year but had to go on sick-leave so it was reposted. Kait ended up getting the contract, and I will return when my treatment is complete and I am well enough... hopefully by the Spring. Anyways, it works out well because I can help her a bit from home. She is currently doing a "STOMP" composition project with a couple of her music classes, and she asked me to make a tutorial video to show the kids. This is what I came up with. The exciting part starts at 4m:15s, but you could also just watch the whole thing 'cause you might learn something:



Anyways... I've made it to today, and that was a long blog post! I guess I should update it more regularly so you don't have to read such a novel.

I always say that.

Thank-you to everyone who has been donating to my page for the Leukemia & Lymphoma Society of Canada's "Light the Night Walk" Victoria. At the time of writing this, I have fundraised $4,909 towards my goal of $5000. Special thanks to Greg and Ruskin Construction for their huge $1,000 donation!

Thank-you Ruth-Anne and the staff of Sooke Elementary for the well-wishes and Superstore gift card. I don't even work there anymore and you folks are still taking care of me!

Thank-you Venessa, for stopping by our house yesterday with a get well card and literally hundreds of dollars in gift cards for Thrifty Foods, M&M Meats, Tim Hortons, and the Little Thai Place restaurant... from her, Jeff, Leta, Joey, Meaghan, Ryan, Sarah & Chris. You are all amazing. Seriously.

Thank-you Shannon, for taking the time to cook us a dozen (or more!?) meals for our freezer. The stew was so good and I can't wait to eat the rest! If I had it my way, we'd eat all of the meals at once, but Kait says we need to save them for the weeks where the chemo makes our lives suck. I think she's probably right.

That's all for now. Thanks for reading my ramblings, and let me know if I need to correct anything... I don't proofread when it's this long!

Christopher