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| Kaitlin, Madeline (4-1/2 years old), Christopher, and Emma (almost 3 years old) on Oct. 13th, 2019 |
Monday, December 9, 2019
Five Years Cancer Free
Well, that's a wrap folks: December 10th marks five years from the date of my stem cell transplant, and I am still alive and kickin'. This blog is officially done!
Wednesday, December 13, 2017
Three Years Cancer Free
A few days ago I received a large chocolate 'C' and a "Happy Birthday Chris 2.0" card in the mail from my mom, serving as a reminder that it has now been three years since my stem cell transplant.
I've had a very busy year with work. I'm in my third year teaching music at the same elementary school, and my DJ business is booming. After this coming weekend, I will have done 55 DJ gigs this year, with only three weekends off between May 6th and now. Yowza! My music teaching position is increasing in January so I will probably start to scale back the DJ work a bit during the non-summer months.
I asked Kaitlin if I was missing anything on here and she said "Yes. Tell them how you're still sick all the f*cking time."
Oops... I guess that means I forgot to go to my oncologist appointment last week.
Life has been crazily busy, to say the least.
So busy, in fact, that I am going to give you the highlights, with a few photos, and then call it a night:
Our family is doing well. Madeline is now two-and-a-half years old, and Emma is 11 months old. Madeline talks non-stop and is currently taking ballet lessons. Emma's favourite activity is terrorizing her older sister Madeline!
We bought our first house, and moved into it two weeks ago today. Most of our stuff has been unpacked, the Christmas lights are up, and both our families are coming for Christmas dinner. This place is a dream come true!
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| Photo by Marlboro Wang - marlborowangphoto.com |
We bought our first house, and moved into it two weeks ago today. Most of our stuff has been unpacked, the Christmas lights are up, and both our families are coming for Christmas dinner. This place is a dream come true!
I've had a very busy year with work. I'm in my third year teaching music at the same elementary school, and my DJ business is booming. After this coming weekend, I will have done 55 DJ gigs this year, with only three weekends off between May 6th and now. Yowza! My music teaching position is increasing in January so I will probably start to scale back the DJ work a bit during the non-summer months.
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| Photo by Kaylyn Van Driesum - www.kvdphotographs.com |
I asked Kaitlin if I was missing anything on here and she said "Yes. Tell them how you're still sick all the f*cking time."
You want me to write about being sick on a cancer blog???
Surely you jest!
Unfortunately, she is correct.
I am chronically sick.
Colds... sinus infections... influenza... hand-foot-and-mouth disease... rotavirus... it never ends.
I know that these are the consequences of subjecting my post-stem-cell-transplant immune system to the germ pool known as the "elementary school music classroom" (I teach somewhere around 230 kids, multiple times per week) but it's frustrating that there isn't much I can do about it.
Oh well. C'est la vie, right? At least I'm alive.
I hope you have a wonderful holiday season, and a very Merry Christmas!
And if you're currently dealing with cancer, please don't hesitate to get in touch if you need someone to talk to.
Thanks for reading,
Christopher
Saturday, December 10, 2016
Two Years Cancer Free
Well, it's Saturday, December 10th, 2016, which means that two years ago today, 600 million stem cells swam back into my body to "reset" my immune system in an attempt to prevent me from continuing to produce mutated, cancerous b-cells.
Two years is a BIG deal!!
Being in remission for two years means the chance of my cancer coming back a third time is statistically very low.
The only thing that will be a bigger deal is when I reach the five year milestone when I will be considered "officially" cured.
You may remember that the first time my cancer relapsed, I was about a month away from celebrating two years of remission, so being cancer free today, December 10th, 2016, is very symbolic.
I made it!!
Not to say it has been easy though. In fact, this fall has been a bit of a low point for me, health-wise.
It's not easy having the immune system of a two-year-old, and working in a germ factory called the "Elementary School Music Classroom"... especially when your 18-month-old toddler starts daycare for the first time and brings home even more germs.
I've actually been keeping track of how much I have been sick since school started in September, and it's quicker to tell you that I've only had two weeks this fall where I have not been sick.
I have been hit mostly with viruses... but I was on antibiotics in November for a chest infection, and I am currently taking a nasal steroid spray to keep my notorious sinus infections at bay. We think that I may have had influenza last week, but it was a bit of a muted version due to the fact that I had received my flu shot almost two weeks prior. I also saw my doctor again yesterday, and now I'm on antibiotics again for some chest and sinus issues.
Oh well. You know what's worse than viruses?
Cancer!
In healthier news, I will be finished my post-transplant immunizations later this month when I get my measles, mumps, rubella, and chicken pox vaccine.
Other than all that, the only other big thing going on in our life is that Kaitlin is so ready to have this new baby!
Her due date is January 5th, and even though she is ready to pop, she has been a real trooper lately in dealing with a constantly sick husband and super active toddler.
Here's a photo from her maternity shoot a couple weeks ago, courtesy of Tracy Christine Photography.
And of course I need to include a recent photo of Madeline in this post, since she's so darn cute!
Sometimes, when I write a new blog post, I get a small handful of random emails from various people in various parts of the world who follow my blog, who just want to let me know what they thought of my latest post.
Some of those people are currently fighting cancer.
And some of these cancer fighters wonder if they have any hope of eventually returning to a "normal" life.
The answer is YES. You will get there. Keep fighting.
Thanks for reading!
Christopher
Wednesday, July 6, 2016
Summer 2016 Update: Baby #2 On The Way!
I'm not sure how many people read this blog anymore, but I wanted to do a quick post for anyone who might be keeping up to date with my journey because I have some super uplifting news:
Kaitlin is pregnant again!
You may remember that before my stem cell transplant the doctors all said it was extremely unlikely that I would be able to father children naturally after the whole thing was said and done. And indeed, I was tested 6 months after my transplant and was found to be completely infertile.
We had prepared for this situation though - before I had my transplant I visited a fertility clinic and froze some of my "little swimmers" so we would have the option of another child in the future.
We were planning to start the (extremely expensive... as in... potentially thousands of dollars) process after Madeline turned two years old next year but it looks like that isn't going to be necessary now as Kaitlin is approximately 14 weeks along with our second naturally-conceived child!
The first ultrasound looked great, and after 3 midwife visits we were able to hear the little heartbeat as well.
It's crazy that our second child has happened this way when it was a similar story with Madeline. You may remember that when I found out my cancer had relapsed in September 2014, Kaitlin and I had three days to attempt to conceive a child before I started chemotherapy, and somehow it worked.
That's why Madeline's middle name is Grace.
I guess you could call us lucky? Or maybe we're just a super-powered-baby-making-machine?
Speaking of Madeline, she is such a little monkey! She turned 1 year old this past May, and she's constantly running around the house saying "GO GO GOOOO" and "MAMA MAMA" and "DADA DADA" and all sorts of other super cute baby words. She is honestly the happiest baby in the world, and we love her so much. It's thrilling to think that she's going to be a big sister next January!
Other than that, life is great! Kaitlin had a super busy year on maternity leave with Madeline, and I had a super busy year teaching music and DJing more than I ever thought possible. From May to October this year I have 46 weddings booked, which is just a little bit insane!
That's all for now. Unless something terrible or amazing (or terribly amazing?) happens, my next post will probably be mid-December when I celebrate Stem Cell Transplant Birthday #2.
Thanks for reading,
Christopher
Kaitlin is pregnant again!
You may remember that before my stem cell transplant the doctors all said it was extremely unlikely that I would be able to father children naturally after the whole thing was said and done. And indeed, I was tested 6 months after my transplant and was found to be completely infertile.
We had prepared for this situation though - before I had my transplant I visited a fertility clinic and froze some of my "little swimmers" so we would have the option of another child in the future.
We were planning to start the (extremely expensive... as in... potentially thousands of dollars) process after Madeline turned two years old next year but it looks like that isn't going to be necessary now as Kaitlin is approximately 14 weeks along with our second naturally-conceived child!
The first ultrasound looked great, and after 3 midwife visits we were able to hear the little heartbeat as well.
It's crazy that our second child has happened this way when it was a similar story with Madeline. You may remember that when I found out my cancer had relapsed in September 2014, Kaitlin and I had three days to attempt to conceive a child before I started chemotherapy, and somehow it worked.
That's why Madeline's middle name is Grace.
I guess you could call us lucky? Or maybe we're just a super-powered-baby-making-machine?
Speaking of Madeline, she is such a little monkey! She turned 1 year old this past May, and she's constantly running around the house saying "GO GO GOOOO" and "MAMA MAMA" and "DADA DADA" and all sorts of other super cute baby words. She is honestly the happiest baby in the world, and we love her so much. It's thrilling to think that she's going to be a big sister next January!
That's all for now. Unless something terrible or amazing (or terribly amazing?) happens, my next post will probably be mid-December when I celebrate Stem Cell Transplant Birthday #2.
Thanks for reading,
Christopher
Monday, September 21, 2015
September Update
My mom told me the other day, "Christopher, you haven't updated your blog since last April."
"Well duh, Mom, I had better things to do!"
But then I got to thinking that I probably should write an update, because my last post started with a gross picture of the interior of my bronchial tubes... and that was the first thing people would see when they were checking out my blog.
Since last April, things have been pretty busy, to say the least!
Our beautiful daughter, Madeline Grace Poynter, was born at Victoria General Hospital on May 17th, 2015, at 5:39 PM, which was five days early. She weighed a healthy 8 lbs 1 oz and had a good strong scream, right from the get-go!
Here are a couple pictures of Madeline at birth:
...and here are a couple pictures of Madeline, now, at four months old!
It was nice that both Kaitlin and I were able to be at home for the first four months of Madeline's life, as I was on medical leave for the school year. During the summer I did some DJ work on the weekends and enjoyed being a dad from Monday to Friday.
Now that it's September I am back to teaching. I got a two-day-per-week contract as the music teacher at Sangster Elementary School and I am loving it so far! I am on the sub list for Mondays, Wednesdays, and Fridays, and I may consider picking up another contract at some point as well. I am fairly busy with DJ work on the weekends throughout the fall though, so I like the flexibility of being able to take a Friday or Monday off when I need to.
In terms of my health, I was doing great, but after one week of teaching I've already caught a cold. I guess that's what happens when you stick a guy with no immunity into an elementary school. Unfortunately I will probably be catching a lot of colds this year.
In other news I had my third round of post-transplant vaccinations last week. The whole vaccination thing got delayed by a few months because of my neutrophil issues but those are 'mostly' under control for now. I am still occasionally taking Neupogen but it seems like my bone marrow is slowly starting to get the hang of neutrophil production again. Yay vaccinations!
We had one more scare a few weeks ago when I developed a cough again. It got pretty bad to the point that my oncologist sent me for a CT scan to make sure my tumour wasn't growing again, but thankfully the scan came back clean.
I could write a whole post on the anxiety surrounding the fear of relapse, but I'd rather just finish up this one and move on.
So.... that's all for now! My next oncologist check-up is in November, so if there is anything to report, I will write another post then. Right now it's time to go blow my nose and get on with my life!
Thanks for reading :)
Christopher
"Well duh, Mom, I had better things to do!"
But then I got to thinking that I probably should write an update, because my last post started with a gross picture of the interior of my bronchial tubes... and that was the first thing people would see when they were checking out my blog.
Since last April, things have been pretty busy, to say the least!
Our beautiful daughter, Madeline Grace Poynter, was born at Victoria General Hospital on May 17th, 2015, at 5:39 PM, which was five days early. She weighed a healthy 8 lbs 1 oz and had a good strong scream, right from the get-go!
Here are a couple pictures of Madeline at birth:
...and here are a couple pictures of Madeline, now, at four months old!
It was nice that both Kaitlin and I were able to be at home for the first four months of Madeline's life, as I was on medical leave for the school year. During the summer I did some DJ work on the weekends and enjoyed being a dad from Monday to Friday.
Now that it's September I am back to teaching. I got a two-day-per-week contract as the music teacher at Sangster Elementary School and I am loving it so far! I am on the sub list for Mondays, Wednesdays, and Fridays, and I may consider picking up another contract at some point as well. I am fairly busy with DJ work on the weekends throughout the fall though, so I like the flexibility of being able to take a Friday or Monday off when I need to.
In terms of my health, I was doing great, but after one week of teaching I've already caught a cold. I guess that's what happens when you stick a guy with no immunity into an elementary school. Unfortunately I will probably be catching a lot of colds this year.
In other news I had my third round of post-transplant vaccinations last week. The whole vaccination thing got delayed by a few months because of my neutrophil issues but those are 'mostly' under control for now. I am still occasionally taking Neupogen but it seems like my bone marrow is slowly starting to get the hang of neutrophil production again. Yay vaccinations!
We had one more scare a few weeks ago when I developed a cough again. It got pretty bad to the point that my oncologist sent me for a CT scan to make sure my tumour wasn't growing again, but thankfully the scan came back clean.
I could write a whole post on the anxiety surrounding the fear of relapse, but I'd rather just finish up this one and move on.
So.... that's all for now! My next oncologist check-up is in November, so if there is anything to report, I will write another post then. Right now it's time to go blow my nose and get on with my life!
Thanks for reading :)
Christopher
Thursday, April 30, 2015
Transplant Complications
About a month and a half ago I developed a cough. It wasn't bad at first - aggravated only by heavy exercise - but after a week it started to get stronger and really persist, no matter what I was doing.
My first thought was "Shit. My tumour is growing. My cancer is back."
My oncologist got me in for a stat X-Ray and CT Scan and they came back clear... PHEW!!!
However, there was still the mystery of the cough: I didn't have any other symptoms of being sick but clearly something was wrong. I was referred to a pulmonary specialist who decided to shove a camera down into my lungs and take a look around. Here's what he saw:
Yes, I know, I always have to be the guy that says (right before being sedated) "Hey can you print off some of the pictures for me?"
Anyways, since I was sedated I don't recall if he saw anything of significance down there (the pictures look fine to me) but I'm seeing him again next Friday so I'll find out then. In the meantime he got me to start taking Salbutamol before I exercise, which hasn't helped so far. He also got me in for a pulmonary function test today, which showed perfect lung function.
So as of now, my cough is a bit of a mystery. Luckily it seems to have gotten a little bit better over the past week but when I ran Finlayson yesterday it made it worse so who knows...
I guess there is also a chance the cough could be related to this next issue:
My bone marrow isn't working properly.
Here are my blood test results from yesterday:
As you can see, my body is no longer producing neutrophils. This means I am extremely susceptible to infections; in fact, I am even in danger from the bacteria that lives on my skin and in my mouth. The last time my neutrophils were this low was following my stem cell transplant and I was semi-isolation at Vancouver General Hospital, getting antibiotics at the first sign of a fever.
Weirdly enough, my neutrophils have been less than 0.5 for several weeks now and I haven't had any signs of infection or sickness even though I've been scraping up my legs while hiking, out in crowded public places, and hanging around my wife who caught a cold in March. I guess the other parts of my immune system are still working well!
My stem cell doctor in Vancouver said that sometimes after a stem cell transplant, the bone marrow can take time to figure out how to do its job again. Also, the antibiotic, Septra, I was taking for three months can sometimes suppress the bone marrow.
My oncologist in Victoria said he thinks it's the result of a bad virus I caught. I'm not sure about this though, because I haven't gotten sick!
My doctor in Vancouver got me to take two G-CSF (Neupogen) injections last week which he said should be enough to kickstart the marrow into producing the neutrophils.
When I talked to him on the phone today he said it was "very puzzling" that the injections hadn't worked, so he and my oncologist decided that I should give myself the G-CSF injections for the next 2-4 weeks (thank-you Pharmacare & Blue Cross for covering the $8000 cost). They also want me to get a bone marrow biopsy (my third since 2012) on Monday so they can try to figure out what the hell is going on.
So... here's a summary:
That's about it for now. I will do another post hopefully next week when we know more about what is going on.
My first thought was "Shit. My tumour is growing. My cancer is back."
My oncologist got me in for a stat X-Ray and CT Scan and they came back clear... PHEW!!!
However, there was still the mystery of the cough: I didn't have any other symptoms of being sick but clearly something was wrong. I was referred to a pulmonary specialist who decided to shove a camera down into my lungs and take a look around. Here's what he saw:
Yes, I know, I always have to be the guy that says (right before being sedated) "Hey can you print off some of the pictures for me?"
Anyways, since I was sedated I don't recall if he saw anything of significance down there (the pictures look fine to me) but I'm seeing him again next Friday so I'll find out then. In the meantime he got me to start taking Salbutamol before I exercise, which hasn't helped so far. He also got me in for a pulmonary function test today, which showed perfect lung function.
So as of now, my cough is a bit of a mystery. Luckily it seems to have gotten a little bit better over the past week but when I ran Finlayson yesterday it made it worse so who knows...
I guess there is also a chance the cough could be related to this next issue:
My bone marrow isn't working properly.
Here are my blood test results from yesterday:
As you can see, my body is no longer producing neutrophils. This means I am extremely susceptible to infections; in fact, I am even in danger from the bacteria that lives on my skin and in my mouth. The last time my neutrophils were this low was following my stem cell transplant and I was semi-isolation at Vancouver General Hospital, getting antibiotics at the first sign of a fever.
Weirdly enough, my neutrophils have been less than 0.5 for several weeks now and I haven't had any signs of infection or sickness even though I've been scraping up my legs while hiking, out in crowded public places, and hanging around my wife who caught a cold in March. I guess the other parts of my immune system are still working well!
My stem cell doctor in Vancouver said that sometimes after a stem cell transplant, the bone marrow can take time to figure out how to do its job again. Also, the antibiotic, Septra, I was taking for three months can sometimes suppress the bone marrow.
My oncologist in Victoria said he thinks it's the result of a bad virus I caught. I'm not sure about this though, because I haven't gotten sick!
My doctor in Vancouver got me to take two G-CSF (Neupogen) injections last week which he said should be enough to kickstart the marrow into producing the neutrophils.
When I talked to him on the phone today he said it was "very puzzling" that the injections hadn't worked, so he and my oncologist decided that I should give myself the G-CSF injections for the next 2-4 weeks (thank-you Pharmacare & Blue Cross for covering the $8000 cost). They also want me to get a bone marrow biopsy (my third since 2012) on Monday so they can try to figure out what the hell is going on.
So... here's a summary:
- I've had a mysterious cough for a month and a half
- I don't have any other symptoms of illness
- Salbutamol pre-exercise doesn't help
- A pulmonary function test showed healthy lungs
- I had a bronchoscopy which may or may not have shown anything
- My bone marrow has stopped producing neutrophils
- It could be the result of a bad virus
- It could be the result of an antibiotic, Septra
- It could be my bone marrow is being "lazy" and just needs a good kickstart
- It could be a condition called Myelodysplastic Syndrome (let's freaking hope not)
That's about it for now. I will do another post hopefully next week when we know more about what is going on.
Thanks for reading,
Christopher
Monday, March 9, 2015
Take that, cancer... again!
I went to Vancouver on Friday for a PET Scan to see if my stem cell transplant worked. Today my oncologist called to let me know that he received the results, and I am cancer-free yet again.
Yeah!
I beat Stage IV Lymphoma twice!
Thank-you Dr. Yee, Dr. Thant, Dr. Abou Morad, and the amazing nurses at the Victoria Cancer Agency, Vancouver Cancer Agency, Royal Jubilee Hospital, and Vancouver General Hospital. All of you literally saved my life.
And of course I couldn't have gotten through this for a second time without the care and support from my loving wife Kaitlin, both our families, and all our friends. I'd love to name every single one of you but I know I'd accidentally miss someone. Please just know that you all live in my heart and I will never forget how much you were (and still are) there for me.
From here on out, I will be getting blood tests every month. I'll see my stem cell doctor at the end of March, and my oncologist in May for check-ups.
In May I will also start receiving all my childhood vaccinations again, but that will happen over a period of two years. Since our baby is due in May, maybe we can get our vaccines together?
My doctors have said I should wait until September to start teaching again. Although I am feeling physically half-decent, my energy and focus still fluctuates quite a bit, and I am still extremely immunocompromised. It's actually kind of scary to think that I no longer have protection against things like colds, flues, chicken pox, mumps, measles, rubella, varicella, diphtheria, tetanus, pertussis, hepatitis... etc... etc...
STAY AWAY FROM ME, GERMY CHILDREN!!!
I don't know what else to write. I am just so relieved that this is all over (again) and I can put all my energy and focus into my continued recovery... and helping out my pregnant wife, of course! I am unbelievably excited to become a father in May, and it's so nice to no longer have cancer be a distraction from that.
I'll post again when I have baby pictures to show you ;)
Thanks for reading,
Christopher
Yeah!
I beat Stage IV Lymphoma twice!
Thank-you Dr. Yee, Dr. Thant, Dr. Abou Morad, and the amazing nurses at the Victoria Cancer Agency, Vancouver Cancer Agency, Royal Jubilee Hospital, and Vancouver General Hospital. All of you literally saved my life.
And of course I couldn't have gotten through this for a second time without the care and support from my loving wife Kaitlin, both our families, and all our friends. I'd love to name every single one of you but I know I'd accidentally miss someone. Please just know that you all live in my heart and I will never forget how much you were (and still are) there for me.
From here on out, I will be getting blood tests every month. I'll see my stem cell doctor at the end of March, and my oncologist in May for check-ups.
In May I will also start receiving all my childhood vaccinations again, but that will happen over a period of two years. Since our baby is due in May, maybe we can get our vaccines together?
My doctors have said I should wait until September to start teaching again. Although I am feeling physically half-decent, my energy and focus still fluctuates quite a bit, and I am still extremely immunocompromised. It's actually kind of scary to think that I no longer have protection against things like colds, flues, chicken pox, mumps, measles, rubella, varicella, diphtheria, tetanus, pertussis, hepatitis... etc... etc...
STAY AWAY FROM ME, GERMY CHILDREN!!!
I don't know what else to write. I am just so relieved that this is all over (again) and I can put all my energy and focus into my continued recovery... and helping out my pregnant wife, of course! I am unbelievably excited to become a father in May, and it's so nice to no longer have cancer be a distraction from that.
I'll post again when I have baby pictures to show you ;)
Thanks for reading,
Christopher
Sunday, December 28, 2014
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
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
Sunday, December 21, 2014
Welcome Home Chris
Day +11 (Sun, Dec. 21)
White Blood Count.................................5.5
Neutrophils: ...........................................3.8
Thanks for reading,
Christopher
White Blood Count.................................5.5
Neutrophils: ...........................................3.8
Hemoglobin............................................96
Platelets.................................................58
Platelets.................................................58
Total Days in Hospital............................17
Chemo Infusions....................................14
Total Km Walked in Hospital..................66
Thanks for reading,
Christopher
Friday, December 19, 2014
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
Day +8 (Thurs, Dec. 18)
White Blood Count....................0.1
Hemoglobin...............................82
Platelets....................................43
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
White Blood Count....................0.3
Hemoglobin...............................84
Platelets....................................37
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
Wednesday, December 17, 2014
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.
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)
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
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...............................99Platelets....................................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
Sunday, December 14, 2014
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
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
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
Friday, December 12, 2014
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).
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.
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
Wednesday, December 10, 2014
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
Sunday, December 7, 2014
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.
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 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.
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.
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.
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.
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!
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
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
Wednesday, December 3, 2014
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
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
Monday, December 1, 2014
Still Waiting
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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!
Tuesday, November 25, 2014
Hickman Line Insertion
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
Sunday, November 23, 2014
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.
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.
Friday, November 21, 2014
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
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
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