Monday, March 21, 2011
The girl who cried "wolf"
My CSF showed no abnormal cells in cytology. I am no longer seeing the spot, either (just the normal spots). They gave me lots of benadryl for my IVIG infusion today, so I'd better go before I write domething wacked-out and embarrassing. Good night.
Friday, March 18, 2011
In it
On Wednesday, I almost dragged you all into the anxiety that is my day to day existence. Just to heighten the drama, and show you what it's like, rather than do what I usually do: wait until it's all resolved and then describe it to you with a hilarious punchline. But in the end, I didn't want to fully drag you in. I will, however, drag you in partially.
Wednesday, I started seeing the spot in my right eye that I began seeing right before my diagnosis a year ago. I'm pretty positive it is the same retinal condition (retinopathy) that was triggered by leukemia when it infiltrated my cerebral spinal fluid the first time around. I don't know how long it's been there. This time, the spot isn't in the center of my vision, so I possibly didn't pick up on it right away. At the moment, it's not even affecting my vision (although they usually get bigger so we'll see what happens), but I do see a flash of it every time I blink. I suspected--no--I was positive, I was having a central nervous system (CNS) relapse. Which would also explain the consistent headaches I've had for the past, oh, I don't know. 3 months? Maybe it would explain the afternoon of vomiting on my cancerversary? Part of my high-risk diagnosis has always been my CNS involvement. It can be difficult to eradicate Leukemic cells from the CSF (cerebral spinal fluid, you may or may not recall) because they can "hide out" amongst the tissues. Moreover, you can be wrong in thinking they're gone, because they are not necessarily evenly distributed throughout the fluid, so one can draw a sample that just happens to miss the leukemia cells. If you relapse in the CNS, it usually eventually happens in the marrow too. And that means starting everything all over again, with probably a lot worse results.
So when I saw the spot, I tried to remain as calm as possible. Which ended up having to be an Ativan-assisted calm, but it was the best I could do. I told Brett, and I swear his impenetrable demeanor cracked for just a second. But he quickly resumed his do-something role. We calmly emailed Dr. R. and suggested I might come in for a test of my CSF as soon as possible. She set me up for an appointment for 3:00 on Thursday. In the meanwhile, I researched everything I could about relapse after transplant, 2nd transplants, cranial radiation, etc. For the record, everything is possible, with a low probability of long-term success. I read about clinical trials for target-specific treatments in case transplant wasn't possible. I wondered if I even was willing to go through treatment again; calmly considered the possibility of things not working out for me, wished I had more plans made or at least written down somewhere for that eventuality. And if I declined more treatment, how much time would I have and what would I do with it? What would I be able to do? Yes, it was grisly. Yes, I almost blogged. Yes, it would have depressed you.
At the appointment on Thursday, my Dr. assured me that a CNS relapse is rare as she casually drew fluid out of my brain. She said she could give me preliminary results the following day (today), and final results Monday or Tuesday. Although I couldn't eat, and couldn't sleep, I managed to remain calm the rest of the evening. Consciously enjoyed my time with my family. Then distracted myself from planning for my demise by watching Ghosthunters and a movie. I somehow slept.
My anxiety built all day today while I waited for the call. Brett had a dr. appointment, and Luna and I went along to keep my mind a little bit occupied, but I checked my phone and email about every 5 minutes. I called the Cancer Center and left messages. I emailed my nurse and both of my doctors. Finally, I received word. They didn't see anything abnormal in the CSF sample, nothing like when I was first diagnosed. It seemed like it might test negative after all, so far things are "looking pretty good." Normal counts and everything. But they won't know for absolute sure until a more fine-scale examination of cytology Monday or Tuesday. That's enough to get me through the weekend, I suppose. There is definitely an element of relief, but I'm not going to get crazy with it until I hear what the cytology says.
So I guess I have possibly dragged you in partially as I wait through the weekend for the final results. I kind of apologize for that, because part of me doesn't want anyone to know what this feels like. Or to even try to imagine it. I just can't wish that on anybody. But I also have this insatiable need to show you how quickly the trajectory of your mind, and life, can change in a very small moment.
I'm not exactly out of the woods yet, but I plan to enjoy the weekend, and will update as soon as I have more info. And anyway, if I'm not relapsing, wtf is going on with my eye this time?! So there's that. I still have remained--for the most part-- eerily calm, despite a few tears here and there. I can be here and enjoy this moment while knowing that tomorrow may be the worst day of my life. I've had plenty of practice with that. I know that everything is transient. The universe keeps reminding me. Over and over. I GET it. The universe is a nag sometimes.
More next week! love, j
Wednesday, I started seeing the spot in my right eye that I began seeing right before my diagnosis a year ago. I'm pretty positive it is the same retinal condition (retinopathy) that was triggered by leukemia when it infiltrated my cerebral spinal fluid the first time around. I don't know how long it's been there. This time, the spot isn't in the center of my vision, so I possibly didn't pick up on it right away. At the moment, it's not even affecting my vision (although they usually get bigger so we'll see what happens), but I do see a flash of it every time I blink. I suspected--no--I was positive, I was having a central nervous system (CNS) relapse. Which would also explain the consistent headaches I've had for the past, oh, I don't know. 3 months? Maybe it would explain the afternoon of vomiting on my cancerversary? Part of my high-risk diagnosis has always been my CNS involvement. It can be difficult to eradicate Leukemic cells from the CSF (cerebral spinal fluid, you may or may not recall) because they can "hide out" amongst the tissues. Moreover, you can be wrong in thinking they're gone, because they are not necessarily evenly distributed throughout the fluid, so one can draw a sample that just happens to miss the leukemia cells. If you relapse in the CNS, it usually eventually happens in the marrow too. And that means starting everything all over again, with probably a lot worse results.
So when I saw the spot, I tried to remain as calm as possible. Which ended up having to be an Ativan-assisted calm, but it was the best I could do. I told Brett, and I swear his impenetrable demeanor cracked for just a second. But he quickly resumed his do-something role. We calmly emailed Dr. R. and suggested I might come in for a test of my CSF as soon as possible. She set me up for an appointment for 3:00 on Thursday. In the meanwhile, I researched everything I could about relapse after transplant, 2nd transplants, cranial radiation, etc. For the record, everything is possible, with a low probability of long-term success. I read about clinical trials for target-specific treatments in case transplant wasn't possible. I wondered if I even was willing to go through treatment again; calmly considered the possibility of things not working out for me, wished I had more plans made or at least written down somewhere for that eventuality. And if I declined more treatment, how much time would I have and what would I do with it? What would I be able to do? Yes, it was grisly. Yes, I almost blogged. Yes, it would have depressed you.
At the appointment on Thursday, my Dr. assured me that a CNS relapse is rare as she casually drew fluid out of my brain. She said she could give me preliminary results the following day (today), and final results Monday or Tuesday. Although I couldn't eat, and couldn't sleep, I managed to remain calm the rest of the evening. Consciously enjoyed my time with my family. Then distracted myself from planning for my demise by watching Ghosthunters and a movie. I somehow slept.
My anxiety built all day today while I waited for the call. Brett had a dr. appointment, and Luna and I went along to keep my mind a little bit occupied, but I checked my phone and email about every 5 minutes. I called the Cancer Center and left messages. I emailed my nurse and both of my doctors. Finally, I received word. They didn't see anything abnormal in the CSF sample, nothing like when I was first diagnosed. It seemed like it might test negative after all, so far things are "looking pretty good." Normal counts and everything. But they won't know for absolute sure until a more fine-scale examination of cytology Monday or Tuesday. That's enough to get me through the weekend, I suppose. There is definitely an element of relief, but I'm not going to get crazy with it until I hear what the cytology says.
So I guess I have possibly dragged you in partially as I wait through the weekend for the final results. I kind of apologize for that, because part of me doesn't want anyone to know what this feels like. Or to even try to imagine it. I just can't wish that on anybody. But I also have this insatiable need to show you how quickly the trajectory of your mind, and life, can change in a very small moment.
I'm not exactly out of the woods yet, but I plan to enjoy the weekend, and will update as soon as I have more info. And anyway, if I'm not relapsing, wtf is going on with my eye this time?! So there's that. I still have remained--for the most part-- eerily calm, despite a few tears here and there. I can be here and enjoy this moment while knowing that tomorrow may be the worst day of my life. I've had plenty of practice with that. I know that everything is transient. The universe keeps reminding me. Over and over. I GET it. The universe is a nag sometimes.
More next week! love, j
Friday, March 11, 2011
Oh my!...uh...
So as I mentioned on Facebook, my doctor here at UCDMC talked with my doctors in Seattle and they came to the decision that I came to months and months ago...I've had quite. enough. interthecal. chemotherapy.
Reasons why:
-the 3 weeks of side-effects following each injection about which I have whined in previous posts
-the 3 weeks of a 2nd steroid on top of my prednisone required to alleviate said side-effects
-my cerebral spinal fluid (CSF) was cleared of leukemia cells with first treatment, and has been clear ever since. The original blast %age was only 8%, I believe.
-there is no empirical evidence that 6 post-transplant treatments are better than 4.
So unless I relapse, I'm done. DONE. D to the O-N-E. Yeah, I said it.
And what, you may ask, is to become of this accoutrement (besides providing you with fodder for your nightmares henceforth)?
Well, Seattle says their standard practice is to just leave it in forever as it probably won't do any harm. UCDMC says their protocol is to remove it eventually, as the remaining hole in your head will heal and probably won't do any harm. Either way, it will stay in for some time so my CSF can still be tested periodically without the need for a lumbar puncture (and I'll let you decide how you feel about any procedure containing the word "puncture"). Remember, I actually have 2 holes in my brain, the one filled by my Ommaya reservoir tube, and the "wrong turn" that was apparently taken by the surgeons on their first try (but just one hole in my skull, so I'm...uh...lucky?). I don't know what effect their handiwork will have on my brain, with the port removed or not. My doctors wave it off in a "Oh, that ol' part of the brain? That's not for anything significant anyway" type of way. And given the neurologic effects of all the IV chemo, radiation, IT chemo, and meds I've had over the past year, who would even notice if these tunnels in my head severed anything important? Brett suggested I may lose the ability to recognize the number 3 or something (wait, what number?). What I do know is this: 1.) the port doesn't mess up my hair too much, so I don't have any beef with it at the moment, and 2.) I intend to blame my every moment of idiocy in the future on it.
So this seems to be a good way to go into my one-year cancerversary. I know the next damn thing will come along--it always does--but for now I'll be just...happy. Really happy.
love to all,
jq
Reasons why:
-the 3 weeks of side-effects following each injection about which I have whined in previous posts
-the 3 weeks of a 2nd steroid on top of my prednisone required to alleviate said side-effects
-my cerebral spinal fluid (CSF) was cleared of leukemia cells with first treatment, and has been clear ever since. The original blast %age was only 8%, I believe.
-there is no empirical evidence that 6 post-transplant treatments are better than 4.
So unless I relapse, I'm done. DONE. D to the O-N-E. Yeah, I said it.
And what, you may ask, is to become of this accoutrement (besides providing you with fodder for your nightmares henceforth)?
 | |
| The line leading down from the reservoir is a tube that allows the CSF to fill the reservoir. My Ommaya reservoir is actually towards the front of my head, just above my hairline, and the tube runs down at an angle. I often referred to the whole apparatus affectionately as my "head port." |
So this seems to be a good way to go into my one-year cancerversary. I know the next damn thing will come along--it always does--but for now I'll be just...happy. Really happy.
love to all,
jq
Tuesday, March 1, 2011
It's finally March! You know what they say, "In like a..." oh, forget it.
I have good-ish news. My Ommaya injection that was scheduled for today was delayed until next week, which means I can hopefully make it through a trip to Tahoe for a wedding this weekend without being on massive amounts of steroids and painkillers. On the other hand, maybe it wouldn't be all that different from when I used to drink at weddings (Janet, I am so sorry for that speech on your wedding video). But I qualify "good" with "ish" because the reason my injection was delayed was that I have been so sickly lately (that, and now I have an Ommaya injection next week). In fact, I had a random vomit session last night. Today I felt pretty good, though. And my counts were inexplicably stellar today. My worrisome platelets jumped from 89 last week to 155 this week. If they're going behave like that, I'm going to ignore them a little more. Clearly they are just desperate for attention. So I'll concentrate on the more reliable blood cells. WBCs and neutrophils are also up (4.7 and 3900, respectively) so I also have a little immunity. Well, as much immunity as a transplant patient can have at this point. Which is...not much. But still. Hematocrit is 36% and hemoglobin 13 which means I won't pass out at some key part of the weekend from anemia. That's a good thing (on the other hand, maybe in wouldn't be all that different from when I used to drink at weddings. :) ).
We also got the house we were considering. So we'll be moving by the end of the month! I'm pretty excited...well, of course there is the whole "moving" part. In fact, if I talk about that right now, I'm going to need to go get an Ativan. Moving on...
I have an actual haircut scheduled for this week. If that's not moving forward, I don't know what is.
I really don't have a heck of a lot of a else to blog about. The thing is, March 14th will be the one-year anniversary of my cancer diagnosis, and I'm getting all retrospective-y again. Next scheduled reflections, should we all still be together on this blog, will be Luna's 3rd birthday (June 7) and my transplant "birthday" (September 22nd). So you've been warned. Recently, I read this blog from a woman my age who has undergone 2 transplants and a lot of treatment for GVHD. I relate so much to what she feels (although I don't feel as though I've lost any friends because of this. And if I did, I would deserve it because I never call anyone or answer my phone or respond to emails [I'm a decent texter though]. I also over-use parentheses and commas, which must be fairly annoying. I still haven't had anyone say anything really clueless or offensive to me, at least not that is memorable. And I wish somebody would so I would have a story for my blog). Do I feel like I've received a gift from this ordeal? No, not really. Is the sky bluer, my time more precious, my compassion for others that suffer deeper, my view of life more vivid? Sometimes. At other times, everything is slightly dulled and otherworldly. Would I trade a more fully realized life for having never gone through this crap? Maybe it's too early to call that one.
I just sometimes wish I had something profound to say. Now I've just sat here for 45 minutes thinking about it, but I have nothing to write. I'll guess I'll do it when I'm more organized. Maybe that will be on March 15th. Or maybe I won't even blog that day. But let me just say I'm not sure I have an organized coping mechanism or philosophy about this thing. It's f-ing confusing. At times I feel enough positivity to buy a house and imagine living there for the next xx years. At other times, I am convinced I won't even make it to the next scheduled retrospectives. Next minute, I just wallow in anger and sadness at the unfairness of it all. I have the whole "one day at a time" thing going on, but that's about it. Or maybe that is the coping mechanism. Either way, I fall off that wagon frequently.
Now I've wasted two paragraphs of your time saying nothing at all. Brett is yelling at me to go to bed. He would be extra annoyed with me if knew I hadn't even taken my pills yet. Goodnight!
We also got the house we were considering. So we'll be moving by the end of the month! I'm pretty excited...well, of course there is the whole "moving" part. In fact, if I talk about that right now, I'm going to need to go get an Ativan. Moving on...
I have an actual haircut scheduled for this week. If that's not moving forward, I don't know what is.
I really don't have a heck of a lot of a else to blog about. The thing is, March 14th will be the one-year anniversary of my cancer diagnosis, and I'm getting all retrospective-y again. Next scheduled reflections, should we all still be together on this blog, will be Luna's 3rd birthday (June 7) and my transplant "birthday" (September 22nd). So you've been warned. Recently, I read this blog from a woman my age who has undergone 2 transplants and a lot of treatment for GVHD. I relate so much to what she feels (although I don't feel as though I've lost any friends because of this. And if I did, I would deserve it because I never call anyone or answer my phone or respond to emails [I'm a decent texter though]. I also over-use parentheses and commas, which must be fairly annoying. I still haven't had anyone say anything really clueless or offensive to me, at least not that is memorable. And I wish somebody would so I would have a story for my blog). Do I feel like I've received a gift from this ordeal? No, not really. Is the sky bluer, my time more precious, my compassion for others that suffer deeper, my view of life more vivid? Sometimes. At other times, everything is slightly dulled and otherworldly. Would I trade a more fully realized life for having never gone through this crap? Maybe it's too early to call that one.
I just sometimes wish I had something profound to say. Now I've just sat here for 45 minutes thinking about it, but I have nothing to write. I'll guess I'll do it when I'm more organized. Maybe that will be on March 15th. Or maybe I won't even blog that day. But let me just say I'm not sure I have an organized coping mechanism or philosophy about this thing. It's f-ing confusing. At times I feel enough positivity to buy a house and imagine living there for the next xx years. At other times, I am convinced I won't even make it to the next scheduled retrospectives. Next minute, I just wallow in anger and sadness at the unfairness of it all. I have the whole "one day at a time" thing going on, but that's about it. Or maybe that is the coping mechanism. Either way, I fall off that wagon frequently.
Now I've wasted two paragraphs of your time saying nothing at all. Brett is yelling at me to go to bed. He would be extra annoyed with me if knew I hadn't even taken my pills yet. Goodnight!
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