I know, that is total weak sauce. But I only go to the doctor once a month now, and I have yet to convince myself that the minutia of my daily activities not related to my transplant journey are of interest to anyone. And how much of my inane musing "On..." can one take? It's like people who write memoirs when they're 20. Only David Eggers can get away with that crap.
Oh, here's something funny that happened. Brett had CVS on speaker phone while calling in a prescription for me. When the pharmacist picked up the line, Luna pushed in front of us and yelled into the phone, "CAN YOU GET MY MOMMY SOME MEDICINE?" Part of me wishes we hadn't said anything after that, just to see what the pharmacist said.
Here's something else cool: I just heard a barn owl fly by.
So anyway, since we've last blog-spoke, I have had 2 colds courtesy of my adorable little viral petri dish, Luna. In the case of cold symptoms, I am to go to the clinic and get blood tests, have someone listen to my lungs, have a nasal swab (where they basically stick a q-tip up your nasal cavity to, oh, about where it meets your BRAIN and collect a snot sample), and have a chest x-ray to check for pneumonia. The first time turned up rhinovirus (the common cold), and I was able to fight it off after about a little more than a week with no fever or complications. This time they say my lung is a little wheezy, and that I really should be examining my sputum when I cough. Rather than deal with yet another bodily fluid today, I think I am going to wait for the results of my tests, which haven't come back yet. I don't have a fever and don't feel consistently bad...although I'm also not sure that I haven't trained myself to get used to feeling bad, which one could mistake for feeling better. Anyway, I guess time will tell. So I have a couple of days to convince myself that I don't have a non-treatable fungal pneumonia, but that I'm just at the "lingering cough" stage of a normal cold. This should be fun.
The cold-or-whatever-it-is development precluded a planned camping trip this past weekend, which deserves a resounding "boo." But we did get to go see Music in the Park at Curtis Park, and I also got to go see the season 4 premier of True Blood at my fellow True Blood-addict Susan's house. There were lots of other addicts there too that have been meeting for awhile. It's like an opium den over there. I'm glad I can now be a part of it.
In prednisone news, I have recently tapered down from 35 mg every other day to 20 mg every other day. I'll be at this dose for a couple months. I have already gone through the withdrawal phase I went through last time, so I don't need to bore you with tales of my mood swings and fatigue and inexplicable guilt that I'm letting everyone down when I'm feeling bad. But surely now I will get a little more of my chin back?
I've read quite a few books and have been generally productive with my days lately so I believe I've earned the right to watch a few episodes of Pawn Stars tonight on Netflix. So I'm signing off here. I'll update after my next appointment, hoping counts will be decent and pneumonia fears assuaged. But if not, I suppose we'll just deal with that too.
Hope everyone had a great solstice and is enjoying the summatime.
sending love, gratitude, peace, and all that yummy stuff,
jess
Monday, June 27, 2011
Monday, May 30, 2011
On Navel Gazing
This post is actually not solely on navel gazing, but I have always wanted to title a piece, "On (subject)." It sounds so scholarly, philosophical and important. Meriting being called "a piece," in fact, rather than "a blog." Anyway, moving on...
I haven't really blogged as I've spent the past little while being fairly tired of myself. I mean, it's just all me, all day, every day. It starts with a morning meditation, which should eventually bring me closer to experiencing my real divine self (which I'm hoping is a little less boring than my earthly, ego-driven self), although currently I am still working through the superficial mind-based me to get there. Yawn. After breakfast, a bunch of pill-math: "Okay, if I take these first they'll make me less nauseous, and if I drink this much water I'll be able to take 4 at once, and today is not a prednisone day but I do have to change my hormone patch but not this morning like on Tuesdays but in the evening, and I have to remember to call in a refill of whatever today and to pick it up before Sunday..." The day continues with me checking the UV index to see how worried I should be about the sun today and which sunscreen I should wear and which hat and if I'll be on the sunny side of the car if I'm driving to the pharmacy in the morning vs. the evening; briefly punctuated by periods of examining every square inch of my skin for new freckles that may or may not have changed or new rashes that may or may not be from the sun (did I put sunscreen there yesterday? was I even in the sun or did I even go outside? what is this red dot? i mean seriously WHAT IS THIS RED DOT?!). There is usually a period of getting tired or not getting tired and questioning it either way, as well as planning a couple of activities with Luna, a couple of house projects, and making some headway on work (the consulting kind) the intensity and length of all of which combined must be JUST SO or I will burn out before Brett gets home, or even worse, burn myself out for the following day. Eventually I take my evening pills and go to bed hoping I ate recently enough that they won't make me vomit and wondering if I drank enough water during the day that I won't wake up with a headache (or according to my doctor, kidney failure for Pete's sake). I tell you, the level of self-examination is excruciating. Meanwhile, I don't get very much of anything besides self-maintenance accomplished, it seems, and Brett picks up all that slack. Saying I'm grateful for him is a bit of an understatement; I am with the exact person I need in my life. Anyway, on navel-gazing: I needed a break. But I'm better now.
Blood counts and etc.: still mostly stable as far as I know. Bi-weekly appointments are now monthly because let's face it, even my doctor is bored by me. I still vomit occasionally. I'm still collecting data on this, but I suspect that it is avocado-induced. Unfortunate, but what are you going to do. Still have episodes of fatigue, as well as episodes of just fine, thank you. I've gone to a few parties even, including a weekend in San Francisco and had a great time. We've taken Luna birding again at the Cosumnes River, which she hadn't stopped talking about since I took her last time. By the way, she's almost 3!! We also went to pick strawberries on a farm with my parents and have slowly been putting the house (which, by the way, we are in love with) together. It's such a great house, interesting and lots of character. It makes the fact that it is high-maintenance almost enjoyable. We continue to receive gifts and help and love from so many people...you know who you are! You have definitely kept us afloat in more ways than you know.
Anyway, everything is as I always say it is, up and down. Does it sound like I'm complaining? Well, I'm actually not. I am really, really happy most of the time. And I mean really happy. Except for the times I'm not. In which case, I may complain. I've grown tired of saying, "...but I can't complain. At least I'm alive." BS. I can so. Everyone that complains is at least alive, whether you've been uncomfortably close to dying or not. So being annoyed at my fat face and unruly hair and bucketful of daily pills and patient-induced neuroses is about as normal as I can get. I know it's a luxury to be able to complain about small things, and I do appreciate the magnitude of that. Not to be confused with a lack of gratitude.
It occurs to me that I rarely post pictures of myself, for obvious reasons, so here are a couple demonstrating my progression since not a lot of people have seen me in awhile.
SO...I'm keeping on trucking. I have come a long way, and probably still have a long way to go (I'm not really sure since I don't know where that is). Hoping everyone is enjoying their spring, or whatever the heck this is, has read the latest Sookie Stackhouse book, and has wonderful plans for the summer (or whatever the heck season is coming next).
Love^2,
jq
I haven't really blogged as I've spent the past little while being fairly tired of myself. I mean, it's just all me, all day, every day. It starts with a morning meditation, which should eventually bring me closer to experiencing my real divine self (which I'm hoping is a little less boring than my earthly, ego-driven self), although currently I am still working through the superficial mind-based me to get there. Yawn. After breakfast, a bunch of pill-math: "Okay, if I take these first they'll make me less nauseous, and if I drink this much water I'll be able to take 4 at once, and today is not a prednisone day but I do have to change my hormone patch but not this morning like on Tuesdays but in the evening, and I have to remember to call in a refill of whatever today and to pick it up before Sunday..." The day continues with me checking the UV index to see how worried I should be about the sun today and which sunscreen I should wear and which hat and if I'll be on the sunny side of the car if I'm driving to the pharmacy in the morning vs. the evening; briefly punctuated by periods of examining every square inch of my skin for new freckles that may or may not have changed or new rashes that may or may not be from the sun (did I put sunscreen there yesterday? was I even in the sun or did I even go outside? what is this red dot? i mean seriously WHAT IS THIS RED DOT?!). There is usually a period of getting tired or not getting tired and questioning it either way, as well as planning a couple of activities with Luna, a couple of house projects, and making some headway on work (the consulting kind) the intensity and length of all of which combined must be JUST SO or I will burn out before Brett gets home, or even worse, burn myself out for the following day. Eventually I take my evening pills and go to bed hoping I ate recently enough that they won't make me vomit and wondering if I drank enough water during the day that I won't wake up with a headache (or according to my doctor, kidney failure for Pete's sake). I tell you, the level of self-examination is excruciating. Meanwhile, I don't get very much of anything besides self-maintenance accomplished, it seems, and Brett picks up all that slack. Saying I'm grateful for him is a bit of an understatement; I am with the exact person I need in my life. Anyway, on navel-gazing: I needed a break. But I'm better now.
Blood counts and etc.: still mostly stable as far as I know. Bi-weekly appointments are now monthly because let's face it, even my doctor is bored by me. I still vomit occasionally. I'm still collecting data on this, but I suspect that it is avocado-induced. Unfortunate, but what are you going to do. Still have episodes of fatigue, as well as episodes of just fine, thank you. I've gone to a few parties even, including a weekend in San Francisco and had a great time. We've taken Luna birding again at the Cosumnes River, which she hadn't stopped talking about since I took her last time. By the way, she's almost 3!! We also went to pick strawberries on a farm with my parents and have slowly been putting the house (which, by the way, we are in love with) together. It's such a great house, interesting and lots of character. It makes the fact that it is high-maintenance almost enjoyable. We continue to receive gifts and help and love from so many people...you know who you are! You have definitely kept us afloat in more ways than you know.
 |
| Casa de Quinn/Williams |
 |
| The small one looks over her domain |
Anyway, everything is as I always say it is, up and down. Does it sound like I'm complaining? Well, I'm actually not. I am really, really happy most of the time. And I mean really happy. Except for the times I'm not. In which case, I may complain. I've grown tired of saying, "...but I can't complain. At least I'm alive." BS. I can so. Everyone that complains is at least alive, whether you've been uncomfortably close to dying or not. So being annoyed at my fat face and unruly hair and bucketful of daily pills and patient-induced neuroses is about as normal as I can get. I know it's a luxury to be able to complain about small things, and I do appreciate the magnitude of that. Not to be confused with a lack of gratitude.
It occurs to me that I rarely post pictures of myself, for obvious reasons, so here are a couple demonstrating my progression since not a lot of people have seen me in awhile.
 | |
| I looked like a cancer patient a few months away from chemo. I was. |
 |
| Rosy cheeks, full face, lots of lustrous hair... the illusion of health was all side-effects of medications. |
 |
| And then I suddenly looked like a 14-year-old boy. |
Love^2,
jq
Friday, April 22, 2011
It's been awhile, eh?
I've been slacking on the blog again. Noted. List of pathetic excuses follows:
First of all, I needed some emotional recovery time from the CNS incident. Second, we closed on the new house a day or two later and realized we had a lot of things to do in a very awkward amount of time, and nothing seemed to be happening when we just sat around and mused about it. Thirdly, medically-speaking, I don't think a whole lot was really happening the past while. My counts have been generally stable, I had another IVIG infusion, my creatinine levels keep trending high which means I'm supposed to drink even MORE water (ugh, I'm already at 3 L / day and am up half the night peeing 3 L of water accordingly), and that's about all I can think of. The sun and warm weather has improved my mood and motivation greatly; however, I can't actually be in the sun because it triggers my cGVHD and little surprise rashes pop up here and there after exposure. They go away on their own, but they are unsightly. And you can imagine the absolute burden of having something unsightly saving your life. Sheesh! Sometimes I should just not talk.
Now, we are on our first tentative long-ish vacation in the past year and a half (which may not seem like a long time between vacations, but if you know our traveling proclivities prior to my dx, it IS). We just don't get out of Sac much anymore. Well, besides Seattle. And a weekend trip to Carson City and Tahoe. How about let's just get on with it. We are wrapping up a week long trip in Santa Barbara and San Diego and I am so sorry, LA, we just couldn't fit you in this time. Not only do I fear Brett literally exploding into a million bits of rage on the 405, my medical/energetic leash is a little shorter than I had daydreamed about, so we have had to limit our activities substantially...
For example, I did not expect to spend the first night of my vacation puking in a garbage can in a hotel room in Santa Barbara. There may be those of you thinking, "Yeah Jessie! Rock on!" But it pains me greatly to say it was not like that. At all. It was about 7 in the evening, the sun wasn't even down, and it came out of nowhere as usual. In fact, the first honking event was in my good friends' (and hopefully still good friends, Yaskos!) bathroom, post-dinner party. The vomiting continued into a Ziploc bag during the car ride home and ended with me with my head in a trash can alone in our hotel room; the box of kleenex for wiping my nose and mouth having fallen into said defiled trash can, and Brett down at the beach filming our child falling quite traumatically into the surf. It was a low moment.
Needless to say, at least we all slept well that night.
But by incorporating daily naps, ample shade, and ready-at-hand anti-nausea medication into our travel plans, things have been going a lot smoother. Luna is having a blast as there seems to be a toddler jamboree, beach, and/or Easter-egg hunt at every stop; Brett and I are having a blast spending time with so many of our friends and family (and mostly not puking in their houses); Topo is back to running amok with his friend Carly; and the overall change of scenery and break from house projects is doing us all well. I still feel like there are more people I wanted to see, and with the people I did see, none of the visits seem long enough, and there are not enough senses to take in enough of the beautiful days that we had...and people, do you realize how much f-ing life there is to be lived in every dang moment? It's ridiculous. By the way, Luna revisited the ocean and frolicked about with no problem, even falling down and bouncing back up. Whew. Anyway, I'm sure the rest of vacay will be more ups and downs and if I haven't learned this by now I deserve to be smacked in the head by a sock full of quarters by the next person I meet (the point here being I'VE LEARNED IT. Don't get all excited).
There have been some decidedly darker days in the past few weeks since I've written. Mandi Schwartz, who I've written about before, died of leukemia a couple of weeks ago. She was 23. She survived a long time without treatment for AML, no small feat. I still have our shared journey so vividly in my head. Another woman I had been communicating with online through the Leukemia and Lymphoma Society lost her husband to ALL; he was my age. They have a small son Luna's age. And most recently, 3 young people in my hometown have died unexpectedly, in diving and car accidents (including the son of a dear family friend). There doesn't seem to be anything to say that is adequate. I just want to be able to send their families and friends love and eventually peace. It makes my heart hurt.
So anyway, that's it from my end. I will try not to be so derelict in my blogging responsibilities again. Having said that, I also guarantee you that I most certainly will be, especially since we'll be moving next week. And so it goes.
I hope everyone is enjoying the tentative onset of spring.
Love x1000,
~j
First of all, I needed some emotional recovery time from the CNS incident. Second, we closed on the new house a day or two later and realized we had a lot of things to do in a very awkward amount of time, and nothing seemed to be happening when we just sat around and mused about it. Thirdly, medically-speaking, I don't think a whole lot was really happening the past while. My counts have been generally stable, I had another IVIG infusion, my creatinine levels keep trending high which means I'm supposed to drink even MORE water (ugh, I'm already at 3 L / day and am up half the night peeing 3 L of water accordingly), and that's about all I can think of. The sun and warm weather has improved my mood and motivation greatly; however, I can't actually be in the sun because it triggers my cGVHD and little surprise rashes pop up here and there after exposure. They go away on their own, but they are unsightly. And you can imagine the absolute burden of having something unsightly saving your life. Sheesh! Sometimes I should just not talk.
Now, we are on our first tentative long-ish vacation in the past year and a half (which may not seem like a long time between vacations, but if you know our traveling proclivities prior to my dx, it IS). We just don't get out of Sac much anymore. Well, besides Seattle. And a weekend trip to Carson City and Tahoe. How about let's just get on with it. We are wrapping up a week long trip in Santa Barbara and San Diego and I am so sorry, LA, we just couldn't fit you in this time. Not only do I fear Brett literally exploding into a million bits of rage on the 405, my medical/energetic leash is a little shorter than I had daydreamed about, so we have had to limit our activities substantially...
For example, I did not expect to spend the first night of my vacation puking in a garbage can in a hotel room in Santa Barbara. There may be those of you thinking, "Yeah Jessie! Rock on!" But it pains me greatly to say it was not like that. At all. It was about 7 in the evening, the sun wasn't even down, and it came out of nowhere as usual. In fact, the first honking event was in my good friends' (and hopefully still good friends, Yaskos!) bathroom, post-dinner party. The vomiting continued into a Ziploc bag during the car ride home and ended with me with my head in a trash can alone in our hotel room; the box of kleenex for wiping my nose and mouth having fallen into said defiled trash can, and Brett down at the beach filming our child falling quite traumatically into the surf. It was a low moment.
Needless to say, at least we all slept well that night.
But by incorporating daily naps, ample shade, and ready-at-hand anti-nausea medication into our travel plans, things have been going a lot smoother. Luna is having a blast as there seems to be a toddler jamboree, beach, and/or Easter-egg hunt at every stop; Brett and I are having a blast spending time with so many of our friends and family (and mostly not puking in their houses); Topo is back to running amok with his friend Carly; and the overall change of scenery and break from house projects is doing us all well. I still feel like there are more people I wanted to see, and with the people I did see, none of the visits seem long enough, and there are not enough senses to take in enough of the beautiful days that we had...and people, do you realize how much f-ing life there is to be lived in every dang moment? It's ridiculous. By the way, Luna revisited the ocean and frolicked about with no problem, even falling down and bouncing back up. Whew. Anyway, I'm sure the rest of vacay will be more ups and downs and if I haven't learned this by now I deserve to be smacked in the head by a sock full of quarters by the next person I meet (the point here being I'VE LEARNED IT. Don't get all excited).
There have been some decidedly darker days in the past few weeks since I've written. Mandi Schwartz, who I've written about before, died of leukemia a couple of weeks ago. She was 23. She survived a long time without treatment for AML, no small feat. I still have our shared journey so vividly in my head. Another woman I had been communicating with online through the Leukemia and Lymphoma Society lost her husband to ALL; he was my age. They have a small son Luna's age. And most recently, 3 young people in my hometown have died unexpectedly, in diving and car accidents (including the son of a dear family friend). There doesn't seem to be anything to say that is adequate. I just want to be able to send their families and friends love and eventually peace. It makes my heart hurt.
So anyway, that's it from my end. I will try not to be so derelict in my blogging responsibilities again. Having said that, I also guarantee you that I most certainly will be, especially since we'll be moving next week. And so it goes.
I hope everyone is enjoying the tentative onset of spring.
Love x1000,
~j
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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