My first day with the new cells. Hmm, I don't feel like Ray yet...
Things went pretty well yesterday. Ray spent most of the day in apheresis (the process of getting his cells collected) and reached the right count around 4pm. The transplant to me didn't start until about 7pm, and it only took an hour. There were some pre-meds beforehand to counter or control an allergic reaction, and some meds afterward because I did get the chills/shakes quite badly followed by a low-grade fever. All in all, from beginning to end the whole thing took about 2.5 hours. It's still pretty weird knowing that Ray and I were different blood types and after his cells "take", I will go from being blood type O to A. When I got the chills & shakes, the Charge Nurse, also known as the nurse in charge :), said "Well, we did just infuse you with an incompatible blood type..." This is pretty weird shit alright!
The fever was gone by bedtime and I actually had a really good sleep. This morning, I feel fine. They say Days +1 to +3 (transplant day is Day 0) are surprisingly uneventful, which I find kind of strange, and things start to get dicey in the next couple of weeks as they lower my immune system to accept the new cells and my body sorts things out. But for now, Wayne and I are celebrating that we have this opportunity, made it to transplant day without a relapse, and things so far have gone really well.
My appetite is not great and it's a bit of a struggle to figure out what to try to eat everyday. I know I need the calories, and Wayne, as always, offers to go out and get "anything I want". So I've sent him out to get food where the thought of it doesn't turn my stomach, only for it to arrive in front of me and I have to push it away like a finicky cat. I haven't lost too much weight yet, and as long as something doesn't make me gag, I will try to force at least a little bit of it down. There are the meal-replacement drinks, but I don't want to have them actually replace a meal three times a day.
I'm crossing my fingers that I can get out of the hospital today for a few hours on a day-pass and spend some time at home. Unfortunately, socializing probably isn't in the cards for a while. Prevention is a key focus right now and we're doing everything we can to prevent or minimize some of those undesired side-effects and possibility of infection.
Stay tuned to The Hotline for more updates.
Thursday, July 21, 2011
Wednesday, July 13, 2011
Here We Go!
And so we begin.
I initially thought the "beginning" was yesterday, but it turns out that while I was officially admitted to the hospital, I just received a test dose of one of the chemo drugs. I was given a small amount of the drug and then had blood drawn/tested throughout the day and evening to see how my body metabolized it. From this, they'll calculate what my real dosage should be for the big-bang treatment that starts tomorrow.
I've felt really good this past month, with no major problems and yesterday was the first time I've been back in Unit 57 for six weeks! It was a bit strange as all the nurses and support staff greeted me with smiles and friendly banter. Even the lunch lady did a double-take when she passed my room, poked her head in and said "you're back!" On the one hand it's comforting to be "where everybody knows your name", but kinda depressing when the place is a hospital.
The patients do get spoiled at the Tom Baker - as you all know from my experience in the cardiology ward, not all units give such good care. I asked my nurse yesterday if she was having a busy day and she said no, she only had 3 patients assigned! She proceeded to explain that they may have gone easy on her because I needed my blood drawn regularly and at very specific and exact times, and another one of her patients was being administered chemo which is quite procedural. At any rate, a 3-1 nurse to patient ratio is pretty amazing.
For now, I get to go home in the evenings - hopefully for the rest of this week and the weekend. The British Open starts tomorrow and I can't get the Golf Channel in the hospital! They tell me that I'll start to feel the effects in about a week, and again the mouth sores are usually one of the main problems. I was instructed to put on as much weight as possible before the transplant on July 20th, because there will likely be a period of time where I can't or don't want to eat. I happily complied and have put on almost 20 lbs from when I was the lightest (94 to 112 lbs). Even the dietitian said that since it's a short-term thing, it didn't matter how I got the calories - just eat eat eat! Everything was fair game - pizza, KFC, cupcakes... yes, yes and YES! I did try to balance things out and had lots of fruits and vegetables too.
As mentioned in my previous post, I had a barrage of tests to do in preparation and my doctor told me yesterday that they all turned out really well. The CT scan showed my lymph nodes are the smallest they've been (since she started monitoring them) and my bone marrow biopsy showed ZERO contamination. Looks like the GDP chemo did a really good job of getting things under control. The dentist also gave me a big thumbs up, which strengthens my argument with Wayne that yes, he really SHOULD brush his teeth twice a day :)
Things are also well under way for the immuno-therapy treatment in Houston after the transplant. It turns out that this treatment is still in a trial phase so it's free! As far as I know, and my doctor agrees, there isn't a lot of risk associated with it so I'm not too worried that it's still in trials. Ray (or rather his blood) passed all the required tests so both his blood and mine have been sent to them. They'll do whatever magic they do and then I hope to go down there around end of October to be infused with the modified T-cells they've grown/manufactured. Kind of weird, yah.
So I'm feeling a bit anxious, scared and excited all at the same time. I'll try to keep you all updated on how things are going. My hair has grown back quite a bit in the last 6-8 weeks so it will be a bit of a downer to see it all fall out again (if it does). Right now I look like a baby monkey - and Wayne likes to rub my head and say "Awwww!". I'll need lots of encouragement in the next month so please keep in touch!
I initially thought the "beginning" was yesterday, but it turns out that while I was officially admitted to the hospital, I just received a test dose of one of the chemo drugs. I was given a small amount of the drug and then had blood drawn/tested throughout the day and evening to see how my body metabolized it. From this, they'll calculate what my real dosage should be for the big-bang treatment that starts tomorrow.
I've felt really good this past month, with no major problems and yesterday was the first time I've been back in Unit 57 for six weeks! It was a bit strange as all the nurses and support staff greeted me with smiles and friendly banter. Even the lunch lady did a double-take when she passed my room, poked her head in and said "you're back!" On the one hand it's comforting to be "where everybody knows your name", but kinda depressing when the place is a hospital.
The patients do get spoiled at the Tom Baker - as you all know from my experience in the cardiology ward, not all units give such good care. I asked my nurse yesterday if she was having a busy day and she said no, she only had 3 patients assigned! She proceeded to explain that they may have gone easy on her because I needed my blood drawn regularly and at very specific and exact times, and another one of her patients was being administered chemo which is quite procedural. At any rate, a 3-1 nurse to patient ratio is pretty amazing.
For now, I get to go home in the evenings - hopefully for the rest of this week and the weekend. The British Open starts tomorrow and I can't get the Golf Channel in the hospital! They tell me that I'll start to feel the effects in about a week, and again the mouth sores are usually one of the main problems. I was instructed to put on as much weight as possible before the transplant on July 20th, because there will likely be a period of time where I can't or don't want to eat. I happily complied and have put on almost 20 lbs from when I was the lightest (94 to 112 lbs). Even the dietitian said that since it's a short-term thing, it didn't matter how I got the calories - just eat eat eat! Everything was fair game - pizza, KFC, cupcakes... yes, yes and YES! I did try to balance things out and had lots of fruits and vegetables too.
As mentioned in my previous post, I had a barrage of tests to do in preparation and my doctor told me yesterday that they all turned out really well. The CT scan showed my lymph nodes are the smallest they've been (since she started monitoring them) and my bone marrow biopsy showed ZERO contamination. Looks like the GDP chemo did a really good job of getting things under control. The dentist also gave me a big thumbs up, which strengthens my argument with Wayne that yes, he really SHOULD brush his teeth twice a day :)
Things are also well under way for the immuno-therapy treatment in Houston after the transplant. It turns out that this treatment is still in a trial phase so it's free! As far as I know, and my doctor agrees, there isn't a lot of risk associated with it so I'm not too worried that it's still in trials. Ray (or rather his blood) passed all the required tests so both his blood and mine have been sent to them. They'll do whatever magic they do and then I hope to go down there around end of October to be infused with the modified T-cells they've grown/manufactured. Kind of weird, yah.
So I'm feeling a bit anxious, scared and excited all at the same time. I'll try to keep you all updated on how things are going. My hair has grown back quite a bit in the last 6-8 weeks so it will be a bit of a downer to see it all fall out again (if it does). Right now I look like a baby monkey - and Wayne likes to rub my head and say "Awwww!". I'll need lots of encouragement in the next month so please keep in touch!
Friday, June 10, 2011
The Decision
It's not often we make a life changing decision, knowing that it is a life changing decision. There are the big ones, like deciding to get married (or not), have kids (or not), or some total career change (changing jobs doesn't count). But most of the time, the events that dramatically change our lives are a result of some other smaller decision that at the time, did not seem that significant.
Many of us have those stories where, in retrospect, you realize a very minor thing totally changed the course of your life. Having peanut butter that one morning instead of plain toast lead to a crazy chain of events and now you're living in Sweden with two kids and a cow in the field.
My story, which I've told many times, has to do with deciding to hit the "Next Page" button on a job posting website instead of shutting down my computer, which I was already in the process of doing. I had already seen the 12/13 jobs posted (which of course all sucked) and decided to not bother checking out the last one that was bumped to the next page. I guess my need for thoroughness (or being anal retentive) superseded my tiredness so I clicked the link to see the last job. It sounded great, but the deadline to apply was exactly that day and it was already midnight. I decided to apply, got the job, and that's how I met Wayne. He started at the same company, on the same day, in the Toronto office.
Fast forward about 13 years later, and Wayne and I are making a very important life decision in a meeting room in the basement of the Tom Baker Cancer Centre, along with my brothers, my doctor and a nurse. It was really a non-decision, in that there really was only one choice. As I wrote in my last post, we were already heavily leaning towards the allogeneic stem cell transplant using my brother's stem cells. But still, I thought we might give some consideration to continuing on with chemo treatments in hopes that one of them puts the disease into long term remission. In a bit of shocker, my doctor told me she thought the prognosis of just continuing with chemo would give me about... a year. Obviously, not an acceptable option, and just hearing that really shook us all up.
We had just spent an hour listening to all the risks, statistics, complications and problems that can happen with an allo transplant. Some can be minor, some fatal. Some acute, some life-long. Some could be an annoyance, others might totally impact your quality of life. It was all quite terrifying to hear. Once the decision was made to move forward with it, my doctor said that I should "try not to be scared". Not all those terrible things are going to happen to everyone. I understand that they have to tell us all of those things for legal reasons, but still, all those risks and problems are real.
It was cloudy, rainy and gloomy when we left the hospital and we were all quietly trying to deal with our own thoughts and feelings. Mine were like a revolving door - being glad we we're moving forward, scared, excited about a potential cure, scared, feeling strong about beating this thing and oh yeah, did I mention scared? It was a tough day and think I spent most of it just trying not to be worried and terrified.
But the next day (yesterday) was bright and sunny and I felt way better about things. In fact, I'm back to thinking "let's get on with it". Part of it is my impatient nature, but a bigger part of it is not wanting to give the cancer a chance to come back. They originally had me scheduled to go on July 19th, but I asked to move it up sooner. They said the best they could do would be to move it up a week, because it has to be timed with my counts coming back up from my next GDP chemo treatment. They also need the time to have me run through a barrage of tests, including seeing their dentist, ophthalmologist etc. I will be so susceptible to infection that they need to find any possible source of trouble and deal with it before we start.
So July 12th is the big date. They estimate I'll be in the hospital for about 4 weeks, then very closely monitored for the next 3-6 months. I'm doing my best to be positive and believe that I will be ok. We've also decided to try the immunotherapy treatment from Baylor Medical Center in Houston, but that will be post-transplant and whenever I am able to travel.
Thanks again to everyone for your supportive emails and phone calls! I'll need all of your positive energy over the next several months - keep it coming!
Many of us have those stories where, in retrospect, you realize a very minor thing totally changed the course of your life. Having peanut butter that one morning instead of plain toast lead to a crazy chain of events and now you're living in Sweden with two kids and a cow in the field.
My story, which I've told many times, has to do with deciding to hit the "Next Page" button on a job posting website instead of shutting down my computer, which I was already in the process of doing. I had already seen the 12/13 jobs posted (which of course all sucked) and decided to not bother checking out the last one that was bumped to the next page. I guess my need for thoroughness (or being anal retentive) superseded my tiredness so I clicked the link to see the last job. It sounded great, but the deadline to apply was exactly that day and it was already midnight. I decided to apply, got the job, and that's how I met Wayne. He started at the same company, on the same day, in the Toronto office.
Fast forward about 13 years later, and Wayne and I are making a very important life decision in a meeting room in the basement of the Tom Baker Cancer Centre, along with my brothers, my doctor and a nurse. It was really a non-decision, in that there really was only one choice. As I wrote in my last post, we were already heavily leaning towards the allogeneic stem cell transplant using my brother's stem cells. But still, I thought we might give some consideration to continuing on with chemo treatments in hopes that one of them puts the disease into long term remission. In a bit of shocker, my doctor told me she thought the prognosis of just continuing with chemo would give me about... a year. Obviously, not an acceptable option, and just hearing that really shook us all up.
We had just spent an hour listening to all the risks, statistics, complications and problems that can happen with an allo transplant. Some can be minor, some fatal. Some acute, some life-long. Some could be an annoyance, others might totally impact your quality of life. It was all quite terrifying to hear. Once the decision was made to move forward with it, my doctor said that I should "try not to be scared". Not all those terrible things are going to happen to everyone. I understand that they have to tell us all of those things for legal reasons, but still, all those risks and problems are real.
It was cloudy, rainy and gloomy when we left the hospital and we were all quietly trying to deal with our own thoughts and feelings. Mine were like a revolving door - being glad we we're moving forward, scared, excited about a potential cure, scared, feeling strong about beating this thing and oh yeah, did I mention scared? It was a tough day and think I spent most of it just trying not to be worried and terrified.
But the next day (yesterday) was bright and sunny and I felt way better about things. In fact, I'm back to thinking "let's get on with it". Part of it is my impatient nature, but a bigger part of it is not wanting to give the cancer a chance to come back. They originally had me scheduled to go on July 19th, but I asked to move it up sooner. They said the best they could do would be to move it up a week, because it has to be timed with my counts coming back up from my next GDP chemo treatment. They also need the time to have me run through a barrage of tests, including seeing their dentist, ophthalmologist etc. I will be so susceptible to infection that they need to find any possible source of trouble and deal with it before we start.
So July 12th is the big date. They estimate I'll be in the hospital for about 4 weeks, then very closely monitored for the next 3-6 months. I'm doing my best to be positive and believe that I will be ok. We've also decided to try the immunotherapy treatment from Baylor Medical Center in Houston, but that will be post-transplant and whenever I am able to travel.
Thanks again to everyone for your supportive emails and phone calls! I'll need all of your positive energy over the next several months - keep it coming!
Monday, May 23, 2011
The Real Fight
Well it's been a month since my last post, and as many of you know, not a good month.
Just a few days after I wrote my last post, my lymph nodes became active again and swelled up. My doctor said this was "very concerning" since it had only 3 weeks after the high-dose chemo. She said my cancer seemed chemo-resistant and therefore, the whole stem cell transplant plan would not work. I'm not sure if we caught her on a bad day or just off-guard that this would happen, but when I asked what the options were, she seemed to struggle for an answer. The only plan seemed to be to try different chemo treatments...until...?? That was a very, very bad day for us.
Over the next week or so I went through another barrage of tests including a bone marrow biopsy, a lymph node biopsy and a CT scan, to confirm whether or not the disease really had returned. While waiting for the results of all those (almost 2 weeks), Wayne and I kept holding on to the hope it was from something else, since I didn't have any other symptoms.
But then on the weekend of May 7th, I started getting chills/fevers - not a good sign. I was admitted back to Tom Baker where they blasted me with several different kinds of antibiotics and Tylenol for two days but the chills/fever just got worse. On the Monday, my doctor said the biopsy confirmed the return of the disease, and given my current condition, we should start me on a new chemotherapy that day. So on the 9th I started a protocol called GDP, and her plan was to give me 6 cycles and hope this flavour of cocktail would put me into remission.
In the meantime, since that very, very, bad day, we got our fighting spirit back and started doing some research to try and find other treatments, or doctors or clinics that gave some alternative to what we dubbed my doctor's "sunset" plan.
One of the first things I did was contact Best Doctors, a consultative second opinion from a panel of doctors and experts around the world. This is a benefit offered through my work, which is awesome. It's been a bit of administrative work with release forms and getting all my medical records sent to them, but they should have everything on Tuesday and will send to a doctor at Harvard for review. That doctor then pulls in whichever expert they feel is necessary for the consult.
From a lot of Googling and help from family and friends (you know who you are!), I've been in touch with doctors from Hong Kong, Boston, New York, Toronto and Houston. Some of these are leaders in their field of research or new treatments for lymphoma. There are several irons in the fire, but two discoveries seem promising so far. First, is a differing opinion that if we can get things under control with the GDP, then an allogeneic (from a donor) stem cell transplant is still an option. The reason an "allo" is recommended over an "auto" (my own stem cells) is because my stem cell collection was contaminated. Even though the percent was really low (0.04%), they can not guarantee it was cleaned 100%. Obviously the risk of re-introducing chemo-resistant cancer cells is not a good risk to take.
Of course there are risks with an allogeneic transplant too, and quite serious. The biggest one is developing Graft vs. Host disease (GVH), where the transplanted stem cells aren't happy with the native organs and environment. Kind of like the reverse of a body rejecting a transplanted organ. However, because my brother Ray is a 10/10 sibling match, the risk of developing serious GVH complications is lowered. If we do go that route, then there is a new immuno-therapy treatment from Baylor College of Medicine in Houston, where they would take my brother's blood and create these modified t-cells that would identify and kill any future cancerous cells. These modified t-cells would be infused into me after the transplant. I discussed this therapy with my doctor who did not see any negative consequences to trying it.
So, right now, I'm on a new chemo regimen in hopes we can get things "under control" (I'm still trying to understand what my doctor's parameters are for that) and then we would have a decision to make. Keep going with the GDP and hope this is the flavour that works, or go for the stem cell transplant with Ray's cells, plus this new T-cell therapy which would hopefully amount to a cure of sorts. There may be other options too, and I'm waiting on the response from both Best Doctors and a doctor from NYU.
I have to say that doing all this research, trying to contact these doctors, corresponding with and getting my medical records to them is practically a full time job. But it definitely helps to feel empowered and proactive about my future, and right now having more information is better than not.
It's been a roller-coaster month. I've been in and out of the hospital several times and still go there several times a week for treatments, appointments or tests, but I'm happy I'm living at home and appreciative that right now, I feel good. The fight has gotten a lot tougher, but I know I'll win and get through this. There's a condo with a pool waiting for us in Atlanta.
Just a few days after I wrote my last post, my lymph nodes became active again and swelled up. My doctor said this was "very concerning" since it had only 3 weeks after the high-dose chemo. She said my cancer seemed chemo-resistant and therefore, the whole stem cell transplant plan would not work. I'm not sure if we caught her on a bad day or just off-guard that this would happen, but when I asked what the options were, she seemed to struggle for an answer. The only plan seemed to be to try different chemo treatments...until...?? That was a very, very bad day for us.
Over the next week or so I went through another barrage of tests including a bone marrow biopsy, a lymph node biopsy and a CT scan, to confirm whether or not the disease really had returned. While waiting for the results of all those (almost 2 weeks), Wayne and I kept holding on to the hope it was from something else, since I didn't have any other symptoms.
But then on the weekend of May 7th, I started getting chills/fevers - not a good sign. I was admitted back to Tom Baker where they blasted me with several different kinds of antibiotics and Tylenol for two days but the chills/fever just got worse. On the Monday, my doctor said the biopsy confirmed the return of the disease, and given my current condition, we should start me on a new chemotherapy that day. So on the 9th I started a protocol called GDP, and her plan was to give me 6 cycles and hope this flavour of cocktail would put me into remission.
In the meantime, since that very, very, bad day, we got our fighting spirit back and started doing some research to try and find other treatments, or doctors or clinics that gave some alternative to what we dubbed my doctor's "sunset" plan.
One of the first things I did was contact Best Doctors, a consultative second opinion from a panel of doctors and experts around the world. This is a benefit offered through my work, which is awesome. It's been a bit of administrative work with release forms and getting all my medical records sent to them, but they should have everything on Tuesday and will send to a doctor at Harvard for review. That doctor then pulls in whichever expert they feel is necessary for the consult.
From a lot of Googling and help from family and friends (you know who you are!), I've been in touch with doctors from Hong Kong, Boston, New York, Toronto and Houston. Some of these are leaders in their field of research or new treatments for lymphoma. There are several irons in the fire, but two discoveries seem promising so far. First, is a differing opinion that if we can get things under control with the GDP, then an allogeneic (from a donor) stem cell transplant is still an option. The reason an "allo" is recommended over an "auto" (my own stem cells) is because my stem cell collection was contaminated. Even though the percent was really low (0.04%), they can not guarantee it was cleaned 100%. Obviously the risk of re-introducing chemo-resistant cancer cells is not a good risk to take.
Of course there are risks with an allogeneic transplant too, and quite serious. The biggest one is developing Graft vs. Host disease (GVH), where the transplanted stem cells aren't happy with the native organs and environment. Kind of like the reverse of a body rejecting a transplanted organ. However, because my brother Ray is a 10/10 sibling match, the risk of developing serious GVH complications is lowered. If we do go that route, then there is a new immuno-therapy treatment from Baylor College of Medicine in Houston, where they would take my brother's blood and create these modified t-cells that would identify and kill any future cancerous cells. These modified t-cells would be infused into me after the transplant. I discussed this therapy with my doctor who did not see any negative consequences to trying it.
So, right now, I'm on a new chemo regimen in hopes we can get things "under control" (I'm still trying to understand what my doctor's parameters are for that) and then we would have a decision to make. Keep going with the GDP and hope this is the flavour that works, or go for the stem cell transplant with Ray's cells, plus this new T-cell therapy which would hopefully amount to a cure of sorts. There may be other options too, and I'm waiting on the response from both Best Doctors and a doctor from NYU.
I have to say that doing all this research, trying to contact these doctors, corresponding with and getting my medical records to them is practically a full time job. But it definitely helps to feel empowered and proactive about my future, and right now having more information is better than not.
It's been a roller-coaster month. I've been in and out of the hospital several times and still go there several times a week for treatments, appointments or tests, but I'm happy I'm living at home and appreciative that right now, I feel good. The fight has gotten a lot tougher, but I know I'll win and get through this. There's a condo with a pool waiting for us in Atlanta.
Saturday, April 23, 2011
Reprieve
I'm home. I can hardly believe it. Sometimes I close my eyes and imagine myself back in my hospital room, just so I can open my eyes to see I'm home and get the most incredible sense of joy. You know when you go on an awesome vacation, have a great time, and yet when you return, you realize that there is really no place more comfortable, more relaxing, more YOU than your home. Well, now imagine if instead of a great vacation, you were in a hospital bed for three weeks. Yah, you get the picture.
Continuing from my last post, I had returned back to Unit 57 from the hell-hole known as Cardiology, but it was still a pretty rough time. The side effects of the chemo were in full swing and each day really was a struggle. I couldn't eat much because of my mouth sores, I couldn't have visitors because my counts were so low, and I had to try to time my self-administered shots of fentanyl (narcotic pain med stronger than morphine) so that it would kick in before I had to go to the bathroom. It didn't always work out. Even through an IV, it can take up to three to five minutes for the drug to take effect. And we all know that when you have that kind of GI tract "problem", you don't have a lead time of three minutes! So very often, after a trip to the bathroom I would lay on my side in bed, shaking with pain for a few minutes until it went away or the fentanyl started to take the edge off. It literally felt like I was "being ripped a new one". I apologize for being so graphic and detailed about such an unpleasant and personal thing, but hey, I gotta keep it real.
There's really no way to rest at the hospital. At night, the most I could string together would be about 2-3 hours of sleep. I had an antibiotic IV drip at midnight every night that took about 45 minutes, then the nurse would come in and "flush" the line via another drip which took 15 minutes, so there wasn't much point in trying to go to bed before 1am. Every night at 4am was blood work and vitals. At 7am they came to weigh you and at 8am was meds. After that, it's constant flow of people throughout the day to clean the room (twice a day), change the garbage bags, change the linen basket, deliver more meds, get your food order for the next day, check vitals, stock housekeeping supplies etc.
Yes, that was the "poor me" portion of the story.
On Wednesday, April 13th they finally began administering the GCSF shots, the ones that get your body producing white blood cells to begin the road to recovery. The goal was to get six "G-shots" over the next six days so my bone marrow would release enough stem cells into my blood system that they could harvest them on Monday, April 18th.
To be honest, when the nurse came to explain the process to me a few days prior to the scheduled collection day, I broke down and cried because it sounded so scary. It seemed there were so many ways things could go wrong and the whole thing sounded way too science fiction to be my reality. The nurse was sympathetic, but then told me she herself had been through it for breast cancer. Not only that, she had it done in Dhahran, Saudi Arabia and was by herself. Her family was back in Canada, and while her son tried to be with her, there was some rule about males not allowed in the female section of the hospital or something like that. So now I thought, Jeannie, you're being a big fat baby. Here I am in the cushy Tom Baker with Wayne by my side - I can do this.
My blood work showed that I was "ready" as scheduled on the 18th. They gave me a last minute G-shot very early in the morning (6am?) and then around 10am they brought this giant machine into my room about the size of a two-person arcade game. It was a bit unnerving that it looked like it was from the 50's. Using two valves from my central line, they took blood out of me, processed it in the machine which separated stem cells from all the other stuff, and then returned the blood to me.
The collection went extremely well. The doctor determined they wanted about 2.3 million cells from me. I produced 2.4 billion stem cells in about 2 -3 hours. They normally schedule people across 3 days in case they're either not ready on the first scheduled day, or it could take several 6-hour collection sessions. So I rocked it! I am a super-producer!
The next step was to test the sample to see if it was usable, meaning it was not contaminated with cancer cells to the point where they couldn't "clean" it. I guess they have this process where they can filter the good from the bad, but if there's too many bad ones then it doesn't work. After a few hours, the doctor told us there was only 0.04% bad cells, definitely low enough that they can clean and use my own stem cells. This was a HUGE relief, as it makes things much, much smoother. Otherwise, they would have to find a match with one of my siblings or a stranger donor.
They're pretty quick to kick you out as soon as possible. So the next day (Tuesday), they discharged me to recover at home for a few weeks, to gain my strength and weight back before the next "big bang" chemo where they'll wipe out everything, give me my stem cells back, load me up with G-shots again and hope that I recover with all the cancer gone. That is the goal.
Right now, I feel ok. I have a lot of muscle mass and strength to get back but it's coming quickly. When I got home I could only take about 3 or 4 stairs at a time before my thighs started burning and I was out of breath. Now, I can go up both flights at a fairly normal pace, though I am pretty tired and a bit out of breath when I get to the top. My mouth is a lot better and I can eat most things, though my taste is still off and a lot of stuff tastes icky and metallic. I was happy to discover that Oreo cookies are not one of those things.
I'm not entirely sure when I will go back for the Big Bang treatment. I am scheduled for May 12th, but that may change depending on what's going on with my heart. The cardiologist is still working on getting the rate down, but it's a slow and gradual process. I'm hoping that the heart situation is some freaky virus thing and my heart will go back to normal function on its own. The cardiologist's nurse gave me hope that this indeed is what often happens when heart function is affected by chemo or a virus.
So until then, I am going to relish every minute that I'm home and continue to believe that I am going to win this battle and get on with my life in a couple of months. Please all continue to put those same positive vibes out there. I think there is a cosmic total where it all adds up and helps.
I appreciate all the emails and I apologize if I haven't replied directly. But please know how much it helps to hear from you all, and that I miss all of you and can't wait to see you again.
Continuing from my last post, I had returned back to Unit 57 from the hell-hole known as Cardiology, but it was still a pretty rough time. The side effects of the chemo were in full swing and each day really was a struggle. I couldn't eat much because of my mouth sores, I couldn't have visitors because my counts were so low, and I had to try to time my self-administered shots of fentanyl (narcotic pain med stronger than morphine) so that it would kick in before I had to go to the bathroom. It didn't always work out. Even through an IV, it can take up to three to five minutes for the drug to take effect. And we all know that when you have that kind of GI tract "problem", you don't have a lead time of three minutes! So very often, after a trip to the bathroom I would lay on my side in bed, shaking with pain for a few minutes until it went away or the fentanyl started to take the edge off. It literally felt like I was "being ripped a new one". I apologize for being so graphic and detailed about such an unpleasant and personal thing, but hey, I gotta keep it real.
There's really no way to rest at the hospital. At night, the most I could string together would be about 2-3 hours of sleep. I had an antibiotic IV drip at midnight every night that took about 45 minutes, then the nurse would come in and "flush" the line via another drip which took 15 minutes, so there wasn't much point in trying to go to bed before 1am. Every night at 4am was blood work and vitals. At 7am they came to weigh you and at 8am was meds. After that, it's constant flow of people throughout the day to clean the room (twice a day), change the garbage bags, change the linen basket, deliver more meds, get your food order for the next day, check vitals, stock housekeeping supplies etc.
Yes, that was the "poor me" portion of the story.
On Wednesday, April 13th they finally began administering the GCSF shots, the ones that get your body producing white blood cells to begin the road to recovery. The goal was to get six "G-shots" over the next six days so my bone marrow would release enough stem cells into my blood system that they could harvest them on Monday, April 18th.
To be honest, when the nurse came to explain the process to me a few days prior to the scheduled collection day, I broke down and cried because it sounded so scary. It seemed there were so many ways things could go wrong and the whole thing sounded way too science fiction to be my reality. The nurse was sympathetic, but then told me she herself had been through it for breast cancer. Not only that, she had it done in Dhahran, Saudi Arabia and was by herself. Her family was back in Canada, and while her son tried to be with her, there was some rule about males not allowed in the female section of the hospital or something like that. So now I thought, Jeannie, you're being a big fat baby. Here I am in the cushy Tom Baker with Wayne by my side - I can do this.
My blood work showed that I was "ready" as scheduled on the 18th. They gave me a last minute G-shot very early in the morning (6am?) and then around 10am they brought this giant machine into my room about the size of a two-person arcade game. It was a bit unnerving that it looked like it was from the 50's. Using two valves from my central line, they took blood out of me, processed it in the machine which separated stem cells from all the other stuff, and then returned the blood to me.
The collection went extremely well. The doctor determined they wanted about 2.3 million cells from me. I produced 2.4 billion stem cells in about 2 -3 hours. They normally schedule people across 3 days in case they're either not ready on the first scheduled day, or it could take several 6-hour collection sessions. So I rocked it! I am a super-producer!
The next step was to test the sample to see if it was usable, meaning it was not contaminated with cancer cells to the point where they couldn't "clean" it. I guess they have this process where they can filter the good from the bad, but if there's too many bad ones then it doesn't work. After a few hours, the doctor told us there was only 0.04% bad cells, definitely low enough that they can clean and use my own stem cells. This was a HUGE relief, as it makes things much, much smoother. Otherwise, they would have to find a match with one of my siblings or a stranger donor.
They're pretty quick to kick you out as soon as possible. So the next day (Tuesday), they discharged me to recover at home for a few weeks, to gain my strength and weight back before the next "big bang" chemo where they'll wipe out everything, give me my stem cells back, load me up with G-shots again and hope that I recover with all the cancer gone. That is the goal.
Right now, I feel ok. I have a lot of muscle mass and strength to get back but it's coming quickly. When I got home I could only take about 3 or 4 stairs at a time before my thighs started burning and I was out of breath. Now, I can go up both flights at a fairly normal pace, though I am pretty tired and a bit out of breath when I get to the top. My mouth is a lot better and I can eat most things, though my taste is still off and a lot of stuff tastes icky and metallic. I was happy to discover that Oreo cookies are not one of those things.
I'm not entirely sure when I will go back for the Big Bang treatment. I am scheduled for May 12th, but that may change depending on what's going on with my heart. The cardiologist is still working on getting the rate down, but it's a slow and gradual process. I'm hoping that the heart situation is some freaky virus thing and my heart will go back to normal function on its own. The cardiologist's nurse gave me hope that this indeed is what often happens when heart function is affected by chemo or a virus.
So until then, I am going to relish every minute that I'm home and continue to believe that I am going to win this battle and get on with my life in a couple of months. Please all continue to put those same positive vibes out there. I think there is a cosmic total where it all adds up and helps.
I appreciate all the emails and I apologize if I haven't replied directly. But please know how much it helps to hear from you all, and that I miss all of you and can't wait to see you again.
Thursday, April 14, 2011
The Ride Gets Bumpy
It's been just over a week since my last post and so much has happened that it feels like months. Unfortunately, most of the "happenings" have not been very good. Things were going along as expected - I was definitely feeling the side effects this time around since the chemo was about seven times stronger than before. But I was managing ok, and they even gave me a pass to go home for the evening of April 3rd, which was great. We had to return to the hospital around 8am for all the meds and tests etc.
The next day, they also gave me another night pass, but we had to return to the hospital around 3am because my temperature was up. After a barrage of tests and rounds of antibiotics, the fever came down but they noticed my heart was beating too fast. They sent me for an echo-cardiogram and compared the results to a previous one done a few weeks ago. The results were very concerning as it showed my heart function had decreased significantly. It was serious enough that the cardiologist looking at the results requested that I be moved to the cardiology department immediately, citing that they had heart monitoring equipment that was not available in my current ward (Units 47/57).
Apparently they had a difficult time finding me a bed over there, and they ended up moving me to cardiology on Thursday night at 3am (technically Friday I guess). So we had to clear out my room in the middle of the night. As the porter was getting closer to the destination, I started to get a sinking feeling. The ward was run down, under construction, cramped and just had an overall bad vibe. I thought, well, maybe I feel this way because it's 3am and I'm tired and now I have a heart issue to deal with etc. While I was parked in the hallway I had a peek inside a room and thought "oh god I hope I'm not going in THERE". I saw a tiny, tiny, old and dingy room that looked as depressing as hell. Sure enough, that's where I was going. My heart sank. Wayne was with me and it didn't look like there would be enough room for him to stay, but they did manage to wheel in a reclining chair. It was an awful thing that reclined into the shape of a wok. I just couldn't handle having him sleep like that so we agreed he should just go home - it was already 4am anyway.
They hooked me up to a cardiac telemetry machine, which continuously monitors my heart and the results are displayed and recorded at the nurse's station. Around 5am, the resident cardiologist came by to check me out and said he wanted to put me on drugs that will make me pee to get rid of some fluids. He said he'd let me sleep for a little bit first, and that we'd start around 6:30am. About 5 minutes after he left, a nurse came in to administer the drug. I said that I thought I was going to be allowed some sleep first, but I just got a cold, uncaring response. So I was up peeing about every 15 minutes until about 6:30am.
Around that same time, I started getting the chills. Soon, I was shaking so badly that it took all the nerve I had to stick my arm out from under the covers to buzz the nurse-call button. I told her I was freezing and had the chills/shakes really badly. She came and gave me some warm blankets, but then also said they needed to weigh me so I was to make my way down to the scale, which was past the nurse's station, about 30 meters from my room. I said I didn't know if I could do that, I was shaking so badly. She simply replied, "well we have to weigh you" and walked out. There was no offer for help or suggestion that they find a portable scale or whatever. So I wrapped myself in a blanket and walked to the nurse's station and got on the scale. I was shaking so badly, yet there was no concern about it all. In fact, as I passed the station again, the nurse said to me "your heart is beating really fast". I said it was probably because I was freezing and had the chills. She didn't show any concern. I got back to my room and after a few minutes, needed more heated blankets. After many minutes, someone came and gave me more blankets, but no one seemed to care about WHY I had the chills, and that it's probably indicative of another fever.
I tried to sleep but gave up around 10:30am. It was so noisy it was like a war zone and I was still cold. A nurse came in to take my vitals and give me some pills. I needed a drink to take the drugs and she said there were some beverages in my breakfast tray. I hadn't been up to look so I asked what there was. She said coffee, orange juice and milk. I asked if I could just get some water, and with a tone of almost disbelief, she said, "ok... yah I guess so."
This was just the beginning of my short, and yet quite traumatic experience in the cardiology department. The same resident doctor came to see me and asked how it was going. I said, "umm, not very well..." assuming he had had seen my heart readings over night (the whole reason I was moved to cardiology to begin with). So to my surprise, he said, "oh, what's wrong?" I said, well I am completely short of breath, I've had the chills/shakes for about 5 hours and I can feel my heart pounding out of my chest. He said, "Oh. I'll go look at your records." He never came back.
They moved me again later in the afternoon. I was quite happy to get out of that room. I was just moving one floor down, and my new room had the same basic layout as the previous but just felt better and less depressing. Wayne had come back by now and we still had no meaningful interaction with a doctor. After some complaining about this to the nurse, a cardiologist finally showed up. He was old, grumpy and completely negative, repeatedly saying how dire my situation was. So to clarify, Wayne asked if we're talking about me never playing sports anymore, or what? His response was that we're talking about whether I live or die. Ok... I wasn't feeling that kind of concern or sense of gravity from the nurses or anyone else. After he left the room, Wayne and I were pretty floored. How much of what he was saying comes from being a negative, grumpy, old Russian doctor with no bedside manner? Clearly there has to be some hope since there's a treatment plan! Just at that time, one of my doctors from Unit 57 came in to see me. She said this sort of thing can happen with the chemo, though it's not that common. It could also be viral, and could improve on its own over time. Overall, she said to try not to worry too much, there's a plan in place to get my heart rate down, and while it may be that I have to take heart meds for the rest of my life, this is a very treatable condition.
Well, that's a significantly different perspective. And while the facts of the case may be the same, we'll go with the positive approach, thank you very much.
Over the next 24 hours or so, I began to gain a completely new appreciation for the level of care at the Tom Baker and associated units (47 & 57). Everything from the rooms themselves to the responsiveness of the staff, and most importantly, the competency level of the nurses. Wayne and I began keeping track of all the instances of what we felt was incompetence, because we might launch a formal complaint at some point. The list is quite long, so I'll just give a few examples:
- Despite a note on the door, time and time again they would enter the room without a mask
- A nurse came to give me my meds and started listing some of them. They didn't sound familiar so I assumed these were my new heart meds. Then I heard "insulin". Whoa! I am sure I am not supposed to get insulin! It turns out she was in the wrong room
- I had to get blood-typed and tagged - standard procedure every 7 days. It took the nurse about 30 minutes to do what I know normally takes about 10. She fumbled and fidgeted and at one point didn't seem sure what parts worked with what (all the required equipment comes in the blood collection kit). She finally collected the blood, but then filled out the paperwork wrong and the lab rejected the whole sample, so they had to do the whole collection again
- The second time around, a blood-type band was successfully generated, but the nurse didn’t know how to put the band on my wrist. It’s a plastic band with a metal clasp. After many minutes, she said, “hmm this is challenging”. I suggested she look at how the old one is attached (still on my wrist) so she tried to follow it, pushed down the metal clasp then realized it was all twisted and not affixed properly at all. The metal clasp was now locked, so she had to cut it off with scissors and said, “I guess I’ll have to get another one.”
- While they were attempting to flush (clean and clear) my central line, I was sprayed in the face twice. The first time it was just with saline. Apparently, the syringe “slipped”. The second time was with this stuff called Heparin, a blood thinner to make sure the line doesn’t get clogged. It smells like paint thinner. It was all over my face and glasses. If I wasn’t wearing glasses it would have gone into my eyes. In this case, the nurse tried to tell me that this was “their procedure”. I was clearly upset, and said I’ve never been sprayed before ever, and I’ve probably had my line flushed at least 50 times. Now, I’ve just been sprayed twice in 20 minutes. She apologized over and over and ended with “don’t be mad at me”.
These are just a few examples. By Saturday, after having spent two nights in the cardio unit, I was determined to get the hell out of there as soon as possible. When the head doctor of Unit 57 came to visit me, I burst into tears and said I had to get out of there and get back to Unit 47/57. I said that it was “a fucking gong show” and I feared for my health and safety. I gave him a few examples. He said he’d talk to the cardiologist and get back to me. At noon, they told me I was moving back to Unit 57. I don’t ever remember feeling more relieved.
Since then, I’ve been appreciating the level of care in this ward, but at the same time struggling with some very difficult side effects. A cardiologist is still following me, and luckily he is a very nice guy and not grumpy Russian guy. They’re slowly lowering my heart rate with medication and they say I’ve been responding well. My mouth is killing me – sores are a very common side effect, and it’s affecting my ability to eat solid food. This of course does not help the other common side effect of GI tract problems. Pain from both of these things lead me to discover… morphine!! It wasn’t as dramatic as I thought it would be. I think they’re giving me a relatively low dosage.
So it’s been very difficult lately. Remember my post about time flying? Well, these past 10 days have definitely not gone fast. Each day feels like a long, long battle. But Wayne and I continue to hold on to belief that all this will be behind us one day. He picks me up when I get down, which is quite frequent lately. Thanks to him and family and friends who constantly remind me that I WILL get through this – these are words I need to hear.
Sunday, April 3, 2011
Back to the Baker
Last Wednesday was the CT scan and then the meeting with the doctor to discuss the plan. The plan was pretty simple, they were admitting me back to the Tom Baker that day. Ok, I guess we're starting.
The first day was mostly prep. I had the bone marrow biopsy which was painless because I had them knock me out. They also put in what's called a "central line" which is probably the best damn thing that's happened. It's basically a tube that runs for a little bit under my skin directly to a main vessel. The other end of the tube sticks out the right sight of my chest with 3 "valves". This is how they put stuff in and how they take stuff out.
No more IVs or vein pricks for blood. The first time I was here, they didn't put one one in and I needed blood tests done 3 or 4x a day. Each time the nurse would say, "Why didn't they put a central line in?" My arms were quite literally black and blue all up and down. Not anymore!! Now when they need blood, they just plug in, and the drugs go in the other lines. It's made a huge difference, especially at the 4AM testing. I just have to be awake enough to roll over. Don't feel a thing.
They ran the chemo Thurs-Saturday and it went ok. I was pretty tired all weekend. Some stomach issues. Some mouth sores that bugging me the most now. Haven't eaten too much but I'm not worried about that. I've been drinking those meal replacement things. My understanding is that things will get bumpier in the next week or so. But Wayne and I will get through it.
Thank you all so much for your emails of support, encouragement and best wishes. I haven't had the energy yet to get back to each of you individually but you all know how much you mean to me.
The first day was mostly prep. I had the bone marrow biopsy which was painless because I had them knock me out. They also put in what's called a "central line" which is probably the best damn thing that's happened. It's basically a tube that runs for a little bit under my skin directly to a main vessel. The other end of the tube sticks out the right sight of my chest with 3 "valves". This is how they put stuff in and how they take stuff out.
No more IVs or vein pricks for blood. The first time I was here, they didn't put one one in and I needed blood tests done 3 or 4x a day. Each time the nurse would say, "Why didn't they put a central line in?" My arms were quite literally black and blue all up and down. Not anymore!! Now when they need blood, they just plug in, and the drugs go in the other lines. It's made a huge difference, especially at the 4AM testing. I just have to be awake enough to roll over. Don't feel a thing.
They ran the chemo Thurs-Saturday and it went ok. I was pretty tired all weekend. Some stomach issues. Some mouth sores that bugging me the most now. Haven't eaten too much but I'm not worried about that. I've been drinking those meal replacement things. My understanding is that things will get bumpier in the next week or so. But Wayne and I will get through it.
Thank you all so much for your emails of support, encouragement and best wishes. I haven't had the energy yet to get back to each of you individually but you all know how much you mean to me.
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