I feel like shit and cancer sucks.
See? I told you that would probably be coming some day. The past 3 weeks have been bad. First, I developed an awful, super itchy rash on my head and face. So I couldn't really go out because I couldn't put anything on my head. The doctor didn't think it was related to the treatment, so I saw my dermatologist. He ran some tests and while waiting for the results just put me on an antibiotic. It totally cleared up in a few days. Nice! Then it totally came back 4 days later. Not nice. Based on the test results, he switched me to a different anti-biotic, which after 10 days, did absolutely nothing. I called and left 2 messages for him, and did not hear back. I thought he might be on vacation so called the appointment-booking line. No answer, no voice mail available, no indication he's on vacation. FFS.
Then my lymph nodes in my head and neck started getting big, but I figured that was due to this rash. Then my temperature started to climb and last Friday, got above the threshold where we're instructed to go to the hospital. We spent 7 hours in emergency, but most of that was from being treated (we waited an hour and a half). Lucky for me, my doctor happened to be the on-call hematologist, so she came to see me. They did blood work, gave me two kinds of antibiotics through an IV and a bunch of fluids. I also had an ECG (my heart rate was 133) and a chest xray. So I felt quite cared for. My doctor is really awesome.
The blood work came back ok, and since I had a pre-scheduled appointment to see her again on Monday (yesterday), they sent me home with a good broad spectrum antibiotic for the weekend.
The weekend did not go well. My fever spiked, lymph nodes got bigger and more of them were enlarged. I felt very, very barfy, but the rash cleared up nicely. This is a bad sign. It means the rash wasn't causing these other symptoms.
Yesterday, I saw my doctor and did more blood work and it's going in the wrong direction. My heart rate was also a crazy 155, so they did another ECG. It was fine. The combined evidence though leads her to believe the cancer is back. This is not so good, since I'm currently in treatment. So we are switching gears, as this indicates the disease is quite aggressive.
The doctor wants to do what's called "High-dose chemotherapy with autologous stem cell transplantation". Basically, I'll get very heavy duty chemo that wipes out everything, and then to help heal my body they'll transplant my stem cells back into me. It's quite intensive treatment and it is likely I will need to be in the hospital for about 2 months.Yes, 2 MONTHS. This is not an outpatient thing.
They will do another bone marrow biopsy to make sure my bone marrow hasn't been affected. If it has, then they'll need to collect stem cells from one of my siblings. The chances of a match are 1/4, and since I have 3 of them, the odds are good there will be a match. I don't know what happens if they can't use mine AND there is no match. I'm staying away from the "what ifs". We'll deal with whatever happens as it happens.
So my chemo for today is canceled, but I still have a CT scan on tomorrow, followed by a
meeting with my doctor where we'll figure out the exact plan, dates etc.
Sigh. Still trying to be positive, but seriously, OY. F'N. VEY.
Tuesday, March 29, 2011
Tuesday, March 15, 2011
Halfway Home
I had my third treatment last Tuesday, which puts me at the midway point. Three down, three to go!
So far, my doctor says I am tolerating and responding to the treatments very well. But I don't know how much they can tell about the efficacy of the chemo. The day before each treatment, they do blood work and a brief physical examine, looking for unwanted lumps/bumps. They haven't found any, which is great, but I guess I won't know what's really going on inside until the CT Scan, which is scheduled for March 30.
Mind you, the "brief physical examine" is still pretty thorough. It involves my doctor trying to find and size up internal organs and lymph nodes by gouging and poking her fingers into my gut. And as she's rummaging around in there, poking and pressing, she asks "does this hurt?" Ummm, well, I guess it hurts as much as expected considering you're squeezing my spleen?? She thought that was pretty funny. I think the idea is that they're looking for a clear shriek of pain or wincing as they push and prod your innards. If you have to stop and think about it to evaluate the level of pain/discomfort... then you're probably fine.
One new development is that my fingertips have become extremely sensitive. It's a common side effect of one of the chemo drugs. Most often, your fingers and feet go numb, sometimes to the point of losing mobility/functionality. For me, it's just hyper-sensitivity, especially to hot and cold. As I told my friend Byron, I would be really good at reading braille right now. He of course, wanted me to try more nefarious things like cracking a safe.
My white blood cells are recovering and reproducing themselves so well that I only need to do two (instead of three) GCSF injections this round! Good. I don't like that part very much, so the fewer the better for sure.
So as I "make the turn" and head down the back 9, I hope I continue to feel good and avoid the major hazards (uuuugggh I miss playing golf so I'll just make really bad analogies). Hopefully the last three chemotherapy treatments will go as well as the first three. I'll continue to think positively and please, keep the emails coming - I love hearing from everyone.
So far, my doctor says I am tolerating and responding to the treatments very well. But I don't know how much they can tell about the efficacy of the chemo. The day before each treatment, they do blood work and a brief physical examine, looking for unwanted lumps/bumps. They haven't found any, which is great, but I guess I won't know what's really going on inside until the CT Scan, which is scheduled for March 30.
Mind you, the "brief physical examine" is still pretty thorough. It involves my doctor trying to find and size up internal organs and lymph nodes by gouging and poking her fingers into my gut. And as she's rummaging around in there, poking and pressing, she asks "does this hurt?" Ummm, well, I guess it hurts as much as expected considering you're squeezing my spleen?? She thought that was pretty funny. I think the idea is that they're looking for a clear shriek of pain or wincing as they push and prod your innards. If you have to stop and think about it to evaluate the level of pain/discomfort... then you're probably fine.
One new development is that my fingertips have become extremely sensitive. It's a common side effect of one of the chemo drugs. Most often, your fingers and feet go numb, sometimes to the point of losing mobility/functionality. For me, it's just hyper-sensitivity, especially to hot and cold. As I told my friend Byron, I would be really good at reading braille right now. He of course, wanted me to try more nefarious things like cracking a safe.
My white blood cells are recovering and reproducing themselves so well that I only need to do two (instead of three) GCSF injections this round! Good. I don't like that part very much, so the fewer the better for sure.
So as I "make the turn" and head down the back 9, I hope I continue to feel good and avoid the major hazards (uuuugggh I miss playing golf so I'll just make really bad analogies). Hopefully the last three chemotherapy treatments will go as well as the first three. I'll continue to think positively and please, keep the emails coming - I love hearing from everyone.
Tuesday, March 1, 2011
Time Flies When Your're... Over 40?
My friend Bonita was looking for a blog update yesterday and wondered why I haven't posted another one yet. I thought I had just posted one so there is nothing new to write about. Then I realized almost two weeks have passed. What? That's half a month! OMG it's March! The saying "time flies when you're having fun" isn't really true. Well I suppose it is, but it's definitely not comprehensive.
You would think that these days, as I sit around and spend entire days in my pajamas, that it would feel like I have a lot of time on my hands. Strangely, it's quite the opposite. And even more strangely, I am getting up earlier (god I am getting old) so my days should feel longer than ever. Yet, they seem to jump instantaneously from: coffee at 8am. Blink. 11am, time for food. Send a few emails. 3pm. Wow it's 3pm, I should <insert something I wanted to get done today>. 5pm. What's for dinner? 10 pm. Wow another day gone. Midnight. Goodnight.
It's a cliche that time goes by faster as you get older. The question is, can we do anything about it? Most of the time we attribute it to being busy. The day runs out before we know it and we didn't get enough stuff checked off the 'To Do' list. But if I can't seem to get 24 hours out my days, when I have no work stress, no deadlines, no meetings, no interactions with people I don't want to interact with, no dealing with traffic or bosses or noisy, demanding kids...then who can? It seems time flies when you're having fun, or really busy, or not really busy, or ... just over 40? or 30? Maybe it's just the mathematics of each day becoming a smaller percentage of our lives as we get older so they feel shorter and shorter. Hmm, that's kind of depressing, Jeannie. But I would be interested in people's thoughts on this: Can we ever feel like we have enough time?
Ok enough of that. Back to me. I went through days 7-9 after chemo, what are normally the worst days, feeling pretty good. So much so, I called the nurse because I was concerned. Maybe the chemo wasn't working. Maybe they gave me the wrong stuff. Maybe they gave me a placebo instead of chemo. She laughed at the latter two suggestions and assured me that I was given "the right stuff." I can attest to the fact that they are pretty careful about that sort of thing. When I received my last treatment, as part of their process they have two separate nurses come by and verify that I am who I'm supposed to be and the drug "package" is the one intended for me. This is a good thing, but the scary part is that you know they must have implemented this process (which we were told was fairly recently) because a mistake had been made in the past! Yikes!
Anyway, the nurse said that sometimes the side effects just don't hit some people, and to enjoy it while I can. It may not be the same after the next treatment, but it's definitely a good thing and nothing to worry about. AWESOME! I can't say I got off completely unscathed. I probably jinxed myself by calling the nurse with claims of feeling no side effects. Shortly after talking to her, I had a few achy days, and unlike the first round, did have some side effects from the GCSF injections. The GCSF makes your body produce more white blood cells inside your bones, but there's only so much room in there. So your bones hurt, and it feels strange... like growing pains. For a few days, it hurt quite a bit. I was grumpy on those days.
When I was feeling good I went out quite a bit and managed to pick up a cold. It's just a stuffy and runny nose. I'm lucky there is no cough or something that could develop into a more dangerous thing. But lesson learned - I was pushing my luck and will stay in for a while, as most of Calgary is these days anyway.
Hopefully we'll be out of the deep freeze next week when I have to go back to the Foothills Hospital for treatment #3. I hate having to go there in the early AM when it's -27 out...I did that too many times. Plus - what is up with the parking there?? How can a major hospital with a world-class cancer center and the best cardiology department in the city, get away with a parking lot that is CASH ONLY?!? Like, really? It's 2011. The people going there are dealing with serious illnesses. C'mon. Get a f'n debit/credit machine.
Whoa! 11am. Time for food.
You would think that these days, as I sit around and spend entire days in my pajamas, that it would feel like I have a lot of time on my hands. Strangely, it's quite the opposite. And even more strangely, I am getting up earlier (god I am getting old) so my days should feel longer than ever. Yet, they seem to jump instantaneously from: coffee at 8am. Blink. 11am, time for food. Send a few emails. 3pm. Wow it's 3pm, I should <insert something I wanted to get done today>. 5pm. What's for dinner? 10 pm. Wow another day gone. Midnight. Goodnight.
It's a cliche that time goes by faster as you get older. The question is, can we do anything about it? Most of the time we attribute it to being busy. The day runs out before we know it and we didn't get enough stuff checked off the 'To Do' list. But if I can't seem to get 24 hours out my days, when I have no work stress, no deadlines, no meetings, no interactions with people I don't want to interact with, no dealing with traffic or bosses or noisy, demanding kids...then who can? It seems time flies when you're having fun, or really busy, or not really busy, or ... just over 40? or 30? Maybe it's just the mathematics of each day becoming a smaller percentage of our lives as we get older so they feel shorter and shorter. Hmm, that's kind of depressing, Jeannie. But I would be interested in people's thoughts on this: Can we ever feel like we have enough time?
Ok enough of that. Back to me. I went through days 7-9 after chemo, what are normally the worst days, feeling pretty good. So much so, I called the nurse because I was concerned. Maybe the chemo wasn't working. Maybe they gave me the wrong stuff. Maybe they gave me a placebo instead of chemo. She laughed at the latter two suggestions and assured me that I was given "the right stuff." I can attest to the fact that they are pretty careful about that sort of thing. When I received my last treatment, as part of their process they have two separate nurses come by and verify that I am who I'm supposed to be and the drug "package" is the one intended for me. This is a good thing, but the scary part is that you know they must have implemented this process (which we were told was fairly recently) because a mistake had been made in the past! Yikes!
Anyway, the nurse said that sometimes the side effects just don't hit some people, and to enjoy it while I can. It may not be the same after the next treatment, but it's definitely a good thing and nothing to worry about. AWESOME! I can't say I got off completely unscathed. I probably jinxed myself by calling the nurse with claims of feeling no side effects. Shortly after talking to her, I had a few achy days, and unlike the first round, did have some side effects from the GCSF injections. The GCSF makes your body produce more white blood cells inside your bones, but there's only so much room in there. So your bones hurt, and it feels strange... like growing pains. For a few days, it hurt quite a bit. I was grumpy on those days.
When I was feeling good I went out quite a bit and managed to pick up a cold. It's just a stuffy and runny nose. I'm lucky there is no cough or something that could develop into a more dangerous thing. But lesson learned - I was pushing my luck and will stay in for a while, as most of Calgary is these days anyway.
Hopefully we'll be out of the deep freeze next week when I have to go back to the Foothills Hospital for treatment #3. I hate having to go there in the early AM when it's -27 out...I did that too many times. Plus - what is up with the parking there?? How can a major hospital with a world-class cancer center and the best cardiology department in the city, get away with a parking lot that is CASH ONLY?!? Like, really? It's 2011. The people going there are dealing with serious illnesses. C'mon. Get a f'n debit/credit machine.
Whoa! 11am. Time for food.
Subscribe to:
Posts (Atom)