First, quick update. We have long been home from Seattle, and concluded our trip with a boat trip to Bainbridge Island (um, I guess obviously it was a boat trip), a tour of the stem cell labs and facilities (so cool to see real scientists! They have lab coats and Erlenmeyer flasks and everything!) and a meander down the Oregon coast coming home.
Everything at the Hutch ended up going pretty well. Bone marrow biopsy was clean; my cells are 100% donor cells. No uterine polyps or fibroids on the ultrasound. No GVHD detected in skin punch or eyes. Bone density good. Everything going smoothly. In fact...maybe too smoothly. Time to change the meds!
I know I've been complaining about the bucket of pills I have had to take each day since day one. But you haven't heard anything until you've heard me complain about tapering off them! First, I had to drop my hormone replacements. Days of manic mood swings ensued. Second, I cut my cyclosporine dose in half. Days of sporadic ear and facial rashes followed by sweet Benadryl nights ensued and continue to ensue. But overall, I'm down to 3-4 pills 2x a day, not including vitamins (which are gummies nowadays because I am so childish that I just refuse to take any more pills). I'll start a taper off prednisone in a couple of months, and the rest a couple of months after that if all goes well. Counts continue to look pretty good, red blood cells coming back and kidneys doing a better job of doing what they are supposed to do. I'm feeling a lot better, with a lot more energy. I attribute that to actually having oxygen in my blood for once. So that's nice.
Now, for the questions. I didn't expect that answering them would require so much soul-baring, but I did promise to answer them all as honestly as I could, so here goes. Please excuse rambling sentences and characteristic overuse of commas.
1) How has this experience changed your relationship with a greater power and your spirituality?
I wasn't particularly settled on the idea of a sentient greater power before this experience, and was still very much searching in the spirituality department. When I got sick, I did try to think my way through it, over and over, to get something worked out before I died (sigh, always the procrastinator). Needless to say, that all came to nothing. Big relief I was given an extension on the living part.
The cool thing is, when I wasn't over-thinking the whole situation, I did come to experience a greater power, if "power" is the right word for it. It surprisingly came through people, through all of you and more, people alive now and people long gone. Even when I was completely alone in my hospital room. It was like everyone was just...there, or here, or whatever. It is strong and it is real and I can't say who or what orchestrates the whole thing; in fact, I can't say that I care in the end. It's just wonderful to really know that it's there.
2) How do you look at society when you are going through this...crap?
I can't say I look at it differently; I'd been a little unimpressed before I got sick. I certainly see more good in individuals then I previously believed was there, which only makes the collective crappiness a little more incomprehensible. I'd still like to see certain things improve, considering the amount of effort I am putting in to stay here. That, and I have brought a child into this mess and I believe she deserves a little bit better.
3) What are the things that make you feel good when you are feeling (A) sick (B) afraid (C) alone?
A.) Medication. I'd like to be able to say something like "breath work" or "meditation," but that simply is not the case for me.
B.) Brett. Also, see #7, below.
C.) see #1. I hardly ever feel alone anymore, whereas at one time, it was a state of being. There was a long period of surreality where my entire world was split into me vs. everybody else. It was like I was watching a TV show of other people walking around healthy, and I was completely detached from them. I couldn't understand any of their concerns, emotions, or lives in general anymore. I'm not quite sure when that faded away, probably when I began to own up to the fact that the cancer was part of me, but just part, and I am still a normal human being. Or slightly abnormal. But lovably so.
4) If the ovaries are indeed firing, can you or would you consider getting pregnant again?
If they were, I theoretically could. They don't totally seem to be at this point, is the final verdict. But either way, no. For one thing, it seems risky. I'm not "cured" yet; they don't consider leukemia cured until one has been in remission for 5 years. That just seems like a dodgy situation to bring a new kid into. For another thing, I've been pumped full of toxins, medications and radiation. Who knows what kind of offspring that might spawn? And finally, I hadn't really wanted a kid #2. I love Luna to a million pieces, and she is wonderfully challenging, and I'm good with that. So, that ship has sailed.
5) How much physical pain have all of the different procedures caused you?
Probably not as much as you'd think. In general, the headaches are the worst pain of all. As well as the severe nausea when I got my intrathecal injections. Oh, and the rectal pain when I first got sick. On a scale of 1-10, childbirth being a 10, those pains were 9's. A lot of the smaller pains (bone aches, biopsies, needles, etc.) become so frequent, they are sort of just sensations any more. Not really painful, per se.
6) How did you manage not to give into the pain and give up?
The pain never caused me to consider giving up (geez, narcotics. They may be all kinds of no good, but they are also small miracles), but the exhaustion sure did. I sometimes just got so tired of it all, body and soul. Not to say I was standing on any ledges or anything, but there were times that I thought, "I can't do another intrathecal injection. I can't take any more pills. I don't want to go back to the hospital. I'm just going to not do anything anymore and ride this thing out into the sunset." And then I went ahead and did all of those things anyway, because despite how often people kept saying, "things will get better," things actually did get better. And eventually, life kept presenting me with more wonderfulness, despite everything. And all the people I love kept showing up and refused to go away. Thanks for that, by the way. So for the moment, it seems worth sticking around for awhile if it can be arranged.
7) How did you manage your fear?
First, I would change the "did" in this sentence to "do." I am still scared sometimes. A lot of times, actually. Second, I'm not sure I "manage" it, but here's what I do. I just feel it, completely and fully. It was difficult in the beginning, because I was stuck with this stupid idea that I had to be "strong" about the whole thing. But eventually, with Brett's unyielding encouragement, I learned to just cry and wail and whine about what I was afraid of and eventually, surprisingly, it just kind of petered out after awhile. I suppose I have to, in some way, accept my fears as part of me, but only just part. Just like I have to accept my cancer, my tricksy blood cells, my exuberant new cells, and the physical rollercoaster of adjusting to them all. I don't take enmity with any of it, I have to take it all in with an open heart, and then it doesn't own me.
8) What are you going to be for Halloween?
No one really asked me that, but I wish someone did because Halloween is my absolute favorite holiday! So for your information, I am going to be a Black Widow spider. For some reason, Brett takes offense. Luna is going to be a witch. I don't know what Brett is going to be yet. Our house looks super scary. It's going to be awesome!
Well, it's Benadryl o'clock for me and as everyone knows, one should never Benadryl and blog. In fact, it is quite possible that this blog will go on hiatus for awhile. Not necessarily because I'm all better and I lived happily ever. It's just that life has been just too incredibly full lately. Can you imagine anything better than that?!
Big giant love to all,
Jess
Sunday, October 16, 2011
Wednesday, September 28, 2011
From the Trenches
A quick update from my latest Seattle adventure, lazily written as a bulleted list:
Love, Jessie
P.S. 3 question have been submitted so far. Remember, I'll answer anything, no matter how inappropriate it may seem!
- First thing Monday, I got a blood draw and had an IV placed for sedation for my bone marrow biopsy. Although the IV had to be painfully reset several times, I was fairly excited at the prospect of having IV sedation for my biopsy.
- Counts were good, especially WBC which were 5.1, and neutrophils which were 4500. All red blood cell counts continue to go down, although creatinine was also down to 1.6.
- My doctors are all delighted with my progress, or rather, lack of further degradation over the past year. They were so impressed with my strength and range of motion that they said I could cancel my physical therapy appointment. As my nurse practitioner said to me, with a raised eyebrow, "I know you already know what to do." I'm assuming that means that although I'm doing okay, once-a-week walks will not suffice. There was some loose talk about tapering off my meds, which will be discussed further on Thursday.
- My doctors also marveled at my skin sensitivity and head problems. Removing my Ommaya port in the future was mentioned as a possibility. Nothing can really be done about my skin in the meanwhile.
- My dentist told me she would allow me one cleaning this year. I have to be careful though, because I can get pneumonia from it. I can get pneumonia from pretty much anything, apparently.
- Had to open my big mouth and blab that I had never had IV sedation for a biopsy, so I was told I wouldn't have it this time then, either. Just oral sedation. IV is painfully taken out.
- Had a cafe tuna sandwich which is pretty much all I ate for the 3 months post-transplant last year. I have been looking forward to one for 9 months...no other tuna sandwich is quite the same.
- Went for bone marrow biopsy, and had only oral and local sedation. Biopsy unpleasant as always. They also decided to take a skin punch out of my forearm to check for GVHD, a procedure which is exactly as gross as it sounds, and thus added to my growing collection of scars.
- Later that day, I became reacquainted with my tuna sandwich from earlier, probably courtesy of the fentanyl. I spent the rest of the day in bed with a bowl at my side.
- The following day, I had an eye exam that was largely uneventful. No GVHD in the eyes.
- Today, I had a bone density scan, a chest x-ray, gynecologist appointment, and nutritionist consult. There are no real results from these yet, except (sadly for you) the gynecologist. Apparently, either I have a fibroid or polyp or something, or my ovaries somehow picked themselves up by their bootstraps and started working again. I now have to have an ultrasound and stop my hormone replacement therapy to find out for sure.
- We took a free ride up the Space Needle and the day was clear and beautiful, but cold as ever.
- We are enjoying 5-star accommodations at the Hunter-Cobb household during our stay. I highly recommend them should you ever find yourself in Seattle.
Love, Jessie
P.S. 3 question have been submitted so far. Remember, I'll answer anything, no matter how inappropriate it may seem!
Thursday, September 22, 2011
Happy Birthday to me
One year ago, a few hours before my stem cell transplant, I felt like this.
Yesterday, when Brett asked me how it felt to be a day away from Day +365, the best I could come up with was, "It doesn't feel like anything." Which, admittedly, isn't very enlightening or inspiring; in fact, it is a little disappointing. How typical of me.
I tried to give it some thought today, when I wasn't busy doing other things to try to distract myself from having to give it some thought. And I came up with two things. The first thing is, I don't really measure my progress like that. I'm certainly not nay-saying milestones. I like a good milestone as much as the next guy. But my milestones are more about everything except the transplant. For example, I've seen loved ones get married. I've seen my daughter learn to tell stories, draw, write, and argue with me WITHOUT END like she's Clarence Darrow or something. I may actually finish reading the Song of Ice and Fire series. I saw friends' babies born. I've made new friends. Even things like, "Wow, I thought I'd already laughed as hard as I could laugh," or "Ok, this was definitely the worst I've ever felt in my life" are points in time that are significant to me. I swear, I come to a new milestone almost every day. So I guess each new day is a milestone; and that's no different from today.
Now, if I had overslept or something a year ago and somehow missed my transplant, I realize none of these milestones would have happened. This brings me to the second thing: gratitude to my donors. Some amazing mothers in hospitals both here and halfway across the world agreed to donate their child's umbilical cord to a public cord bank. They could have banked them for themselves, or said, "That's weird. No way." but they didn't. And they won't ever really know that they gave someone at least a whole year of a ridiculous amount of milestones. I hope somehow, in some way, I'll be able to pass along a tiny portion of their generosity. This gratitude extends to all of you that joined the donor registry with yourself or your babies' cords. I hope you realize what and incredible, stupendous act of generosity that is. It is!
Oh, and what is a birthday party without games?! I been wanting to do this for awhile, and today feels like the right day to do it. This game is called, "Everything You Wanted to Know About Having Cancer*" (*but were afraid to ask). For the next week or so, I'll be in Seattle for my 1-year follow-up appointments. During that time, you can ask me absolutely anything about leukemia, transplant, this blog, etc. And I will answer all questions in a post after I get home from Seattle. And I mean anything! Like, "What's your favorite narcotic?" "Did you write a will?" "What does it feel like to get chemotherapy and/or lose all your hair?" "Do you think your boundless positivity and consistently upbeat attitude has helped you?" I promise I will answer as truthfully as I can. You can email me questions (jessiequinn at gmail dot com). Or, you can ask in the comments section. I can't think of a way for you to remain anonymous to me (if you can, great), but I won't publicize who asked what question. Nor will I hold it against you or think you're strange for asking. So this game requires audience participation, people!! If no one asks anything, I'll be forced to blog about the same old "my blood counts are up/down/the same" "I think I'm relapsing/oh wait, I'm not" "I have another rash" for the foreseeable future. So make with the questions. It will be fun...ish.
Expect updates while I'm in Seattle, but also be prepared not to actually see any. I really will try, though. I'm going to go ahead and put it out there: I'm as nervous as a cat in a room full of rocking chairs, but I'm looking forward to it at the same time. Onward and upward, as they say. But mostly onward, in this particular case.
Love and love and love and sincerest thanks to everyone who has been with me through this. You have really literally been with me. I can feel it every single time I have to summon up my determination to get through each obstacle and make my way to the other side of every fearful moment. I appreciate it with all my heart.
Yesterday, when Brett asked me how it felt to be a day away from Day +365, the best I could come up with was, "It doesn't feel like anything." Which, admittedly, isn't very enlightening or inspiring; in fact, it is a little disappointing. How typical of me.
I tried to give it some thought today, when I wasn't busy doing other things to try to distract myself from having to give it some thought. And I came up with two things. The first thing is, I don't really measure my progress like that. I'm certainly not nay-saying milestones. I like a good milestone as much as the next guy. But my milestones are more about everything except the transplant. For example, I've seen loved ones get married. I've seen my daughter learn to tell stories, draw, write, and argue with me WITHOUT END like she's Clarence Darrow or something. I may actually finish reading the Song of Ice and Fire series. I saw friends' babies born. I've made new friends. Even things like, "Wow, I thought I'd already laughed as hard as I could laugh," or "Ok, this was definitely the worst I've ever felt in my life" are points in time that are significant to me. I swear, I come to a new milestone almost every day. So I guess each new day is a milestone; and that's no different from today.
Now, if I had overslept or something a year ago and somehow missed my transplant, I realize none of these milestones would have happened. This brings me to the second thing: gratitude to my donors. Some amazing mothers in hospitals both here and halfway across the world agreed to donate their child's umbilical cord to a public cord bank. They could have banked them for themselves, or said, "That's weird. No way." but they didn't. And they won't ever really know that they gave someone at least a whole year of a ridiculous amount of milestones. I hope somehow, in some way, I'll be able to pass along a tiny portion of their generosity. This gratitude extends to all of you that joined the donor registry with yourself or your babies' cords. I hope you realize what and incredible, stupendous act of generosity that is. It is!
Oh, and what is a birthday party without games?! I been wanting to do this for awhile, and today feels like the right day to do it. This game is called, "Everything You Wanted to Know About Having Cancer*" (*but were afraid to ask). For the next week or so, I'll be in Seattle for my 1-year follow-up appointments. During that time, you can ask me absolutely anything about leukemia, transplant, this blog, etc. And I will answer all questions in a post after I get home from Seattle. And I mean anything! Like, "What's your favorite narcotic?" "Did you write a will?" "What does it feel like to get chemotherapy and/or lose all your hair?" "Do you think your boundless positivity and consistently upbeat attitude has helped you?" I promise I will answer as truthfully as I can. You can email me questions (jessiequinn at gmail dot com). Or, you can ask in the comments section. I can't think of a way for you to remain anonymous to me (if you can, great), but I won't publicize who asked what question. Nor will I hold it against you or think you're strange for asking. So this game requires audience participation, people!! If no one asks anything, I'll be forced to blog about the same old "my blood counts are up/down/the same" "I think I'm relapsing/oh wait, I'm not" "I have another rash" for the foreseeable future. So make with the questions. It will be fun...ish.
Expect updates while I'm in Seattle, but also be prepared not to actually see any. I really will try, though. I'm going to go ahead and put it out there: I'm as nervous as a cat in a room full of rocking chairs, but I'm looking forward to it at the same time. Onward and upward, as they say. But mostly onward, in this particular case.
Love and love and love and sincerest thanks to everyone who has been with me through this. You have really literally been with me. I can feel it every single time I have to summon up my determination to get through each obstacle and make my way to the other side of every fearful moment. I appreciate it with all my heart.
Wednesday, August 24, 2011
Back-of-the-napkin amateur medical detectivery- Part II
FAQs:
1. Is detectivery even a word?
answer: Yes. It is the act of being detectiverous.
My investigative approach this time involved the novel methodology of "asking my doctor, who is trained in such things, what she thinks." While my WBC continue to wildly see-saw all over the place (last week, 5.1; this week, 3.2), my red blood counts continue to go down slightly. I posed this scholarly question to my doctor last week, "What's the deal with my red blood cells?" She told me that the kidneys produce a hormone that stimulates the production of red blood cells. Since my kidney function has been declining over time due to cyclosporine toxicity and my apparent inability to drink enough water (3.5L/day not being "enough"), my RBC production has gone down (as well as hemoglobin production).
Well. I took this information and summarily cast it aside.
So this week, when RBC counts still sucked, I freaked out in the customary manner. A little Googling lead me to some sort of kidney website which again detailed the relationship between anemia and kidney function. Due to production of a hormone called EPO on behalf of the kidneys.
Oh. Right.
So it seems that my doctor, the so-called "Head of the UCDMC Bone Marrow Transplant Program," might just know what she is talking about...that is, IF! her information checks out with my Excel spreadsheet when I graph RBC v. creatinine levels and determine that there is indeed an inverse relationship (creatinine levels increase as kidney function decreases, I can't remember if I have mentioned that). Until then, the saga continues. Well, for me, anyway. Everyone else seems pretty ready to put the whole thing to bed. But I leave you with this: I am now scheduled for a urinanalysis and ultrasound to check out whatever needs to be checked out about the kidneys. So the case is not exactly closed because there could still be some other nefarious thing!! Even if my "doctor" says these measures are "routine." Hmph.
Meanwhile, most other things are going well here. Hope they are where you are too!
1. Is detectivery even a word?
answer: Yes. It is the act of being detectiverous.
My investigative approach this time involved the novel methodology of "asking my doctor, who is trained in such things, what she thinks." While my WBC continue to wildly see-saw all over the place (last week, 5.1; this week, 3.2), my red blood counts continue to go down slightly. I posed this scholarly question to my doctor last week, "What's the deal with my red blood cells?" She told me that the kidneys produce a hormone that stimulates the production of red blood cells. Since my kidney function has been declining over time due to cyclosporine toxicity and my apparent inability to drink enough water (3.5L/day not being "enough"), my RBC production has gone down (as well as hemoglobin production).
Well. I took this information and summarily cast it aside.
So this week, when RBC counts still sucked, I freaked out in the customary manner. A little Googling lead me to some sort of kidney website which again detailed the relationship between anemia and kidney function. Due to production of a hormone called EPO on behalf of the kidneys.
Oh. Right.
So it seems that my doctor, the so-called "Head of the UCDMC Bone Marrow Transplant Program," might just know what she is talking about...that is, IF! her information checks out with my Excel spreadsheet when I graph RBC v. creatinine levels and determine that there is indeed an inverse relationship (creatinine levels increase as kidney function decreases, I can't remember if I have mentioned that). Until then, the saga continues. Well, for me, anyway. Everyone else seems pretty ready to put the whole thing to bed. But I leave you with this: I am now scheduled for a urinanalysis and ultrasound to check out whatever needs to be checked out about the kidneys. So the case is not exactly closed because there could still be some other nefarious thing!! Even if my "doctor" says these measures are "routine." Hmph.
Meanwhile, most other things are going well here. Hope they are where you are too!
Wednesday, August 10, 2011
Back-of-the-napkin amateur medical detectivery
First of all, a disclaimer. I am not a doctor. At least, not the kind that actually helps people. So all of the following is probably wrong, but it is enormously satisfying to me and it's my blog.
I figured if I didn't update now, I probably wouldn't update until October or something, so here goes. I had my blood draw this morning. My white blood cell count went up to 3.3...still low but fairly normal (although below my own average) for me. Neutrophils almost doubled since my last blood draw and are well within the ordinary person's normal range. Hell, I may have more neutrophils than you at the moment. Platelets are low-ish, but normal for me (although, again, below my average). The mystery that remains is this: how on earth I spent 3 days frolicking around at 8500-9000 ft with a hematocrit of 28%. Low normal for a healthy person is 34%; below 27% and I get a transfusion. So that is still oscillating downward, along with all my red blood counts (hemoglobin and red blood count as well). I guess stunning scenery can counteract the effects of anemia.
I took a minute to contemplate all my data in my handy dandy spreadsheet and graphs and a couple of things stood out. First, my white blood cells regularly peaked at the beginning of each month since January (to between 5 and 8), then declined throughout the month to around 3. I'm guessing this may be due to the intrathecal chemo I received at the end of each month, followed by a short course of steroids, which inflates blood counts (releases your blood cells out of the marrow into the blood stream). This cycle stopped in March, when I stopped the chemo. I had another WBC peak in mid-May, when I got sick with a cold. I could assume that at this point, WBCs were flooding out of the marrow to do their thing with the virus. Go team! Counts then went back to the low 3s. They started to decline again when- you guessed it (or perhaps didn't guess it at all)- I started to taper prednisone, my other steroid dose. How about that? Neutrophils follow the same pattern.
The second thing I noticed was that all my blood counts crashed and my kidney number got awful soon after I got pneumovirus. I guess that sometimes happens with viruses, which I realize is the opposite of what I said earlier. But that's the beauty of the human body! Its data can fit any explanation you want it to. Especially when you have a rigorous sample size of 1. I currently have no hypothesis for the RBC issue but I intend to look into it.
Anyway, that's that. See you hopefully a few times in September- that's when I have my one-year follow-up in Seattle. Let's not talk about that just yet.
I figured if I didn't update now, I probably wouldn't update until October or something, so here goes. I had my blood draw this morning. My white blood cell count went up to 3.3...still low but fairly normal (although below my own average) for me. Neutrophils almost doubled since my last blood draw and are well within the ordinary person's normal range. Hell, I may have more neutrophils than you at the moment. Platelets are low-ish, but normal for me (although, again, below my average). The mystery that remains is this: how on earth I spent 3 days frolicking around at 8500-9000 ft with a hematocrit of 28%. Low normal for a healthy person is 34%; below 27% and I get a transfusion. So that is still oscillating downward, along with all my red blood counts (hemoglobin and red blood count as well). I guess stunning scenery can counteract the effects of anemia.
I took a minute to contemplate all my data in my handy dandy spreadsheet and graphs and a couple of things stood out. First, my white blood cells regularly peaked at the beginning of each month since January (to between 5 and 8), then declined throughout the month to around 3. I'm guessing this may be due to the intrathecal chemo I received at the end of each month, followed by a short course of steroids, which inflates blood counts (releases your blood cells out of the marrow into the blood stream). This cycle stopped in March, when I stopped the chemo. I had another WBC peak in mid-May, when I got sick with a cold. I could assume that at this point, WBCs were flooding out of the marrow to do their thing with the virus. Go team! Counts then went back to the low 3s. They started to decline again when- you guessed it (or perhaps didn't guess it at all)- I started to taper prednisone, my other steroid dose. How about that? Neutrophils follow the same pattern.
The second thing I noticed was that all my blood counts crashed and my kidney number got awful soon after I got pneumovirus. I guess that sometimes happens with viruses, which I realize is the opposite of what I said earlier. But that's the beauty of the human body! Its data can fit any explanation you want it to. Especially when you have a rigorous sample size of 1. I currently have no hypothesis for the RBC issue but I intend to look into it.
Anyway, that's that. See you hopefully a few times in September- that's when I have my one-year follow-up in Seattle. Let's not talk about that just yet.
Tuesday, August 9, 2011
Crap, is it August already??
Well, guess I missed July! Oops. All kinds of stuff happened. Too bad you don't get to hear about most of it. I will tell you this: I got pneumovirus. It went away.
Anyway, we just got home from a lovely camping trip at the edge of the Mokulumne Wilderness. It was Luna's first, and thus a first for all of us as a family. There were amazing wildflowers, ginormous trees, new birds, bats, and lots of hiking. It was a fantastic, if slightly mosquito-y good time. Luna was completely beside herself. Every time we turned around, she was scaling granite boulder piles, or climbing on fallen trees, or was in the middle of a meadow picking flowers, or was climbing up a hill off-trail. This shows that a.) she was clearly born to be outdoors, and b.) we should probably be more attentive as parents, so we are not always pulling our daughter off the top of boulders, out of trees, etc.
Apparently, there is a way to get a fatigue-plagued, low blood-count-having, drug-addled, kind-of-complainy transplant patient to physically push herself a lot further than she has in a long time. I guess all I needed was an interpretive sign cheerfully posted at a trailhead in camp. The sign provided information on a couple of suggested hikes, the easiest being described as a moderate, 1.5 mile hike through cool pine forest and across a meadow of wildflowers, ending at a high alpine lake. The other suggested hike was one I had hiked before while backpacking (in, obviously, healthier times). I remembered it as steep, exposed, and long; and naturally chose the first hike. Brett, Luna, Topo and I set off triumphantly.
Now, once you have me on a trail, you really just have to rely on my stubbornness from a former life to keep me going. Even if the trail is longer than the cheerful sign had indicated (how is that even possible?! The Forest Service could have figured the mileage on their personal iPhones, for Pete's sake). Even if it is steeper than previously supposed. And more exposed. And climbing up to over 9000 ft in elevation. Keep in mind, I haven't even walked more than a couple of miles at sea level on flat ground in at least a year. And here I am on this mountain, saying, "Let's just go a little further until we can see where the trail goes." "Let's just go to that ridge and see if we can see the lake." "We've come so far already. Let's just keep going until we get there." By the time we finished that 5 mile hike, I must have been completely out of my mind. Because Luna was falling asleep, I suggested another hike to keep her awake. So we hiked up another trail looking for an old mine, and when we didn't find it, I suggested, "Let's just go a little further and see what the trail looks like." "Maybe it's off the trail, and we should just climb up this rock face here and see what's on the other side." "Well, it's not here; let's climb up and peek over that ridge." Brett was kind enough not to point out that I had no business doing any of this. And guess how I felt afterward.
GREAT! I mean, so I went to bed at about 7:30. So I am sunburned (I took every precaution, except, you know, "staying out of the sun"). So my legs are a little shaky. I feel like if we could have just stayed up there for say, a month, I could have kept going and going until I became practically my old self...or rather, another new version of my current self. Jessie 2.0. One with fewer bugs and less likely to crash.
But allow me to temper all this good news with my characteristic worrying. Right now, I'm starting to worry about my blood draw tomorrow. In July, the month that Blog forgot, my kidney function was getting progressively crappier. Then, at a couple of blood draws, all my numbers shot south (and I know that this was a dramatic drop because I recently put all my blood count numbers into an Excel spreadsheet and graphed them! There, I said it! I also added trendlines and R-squared values! Laugh all you like! I already know I'm a nerd!). This was concerning to all, but my doctor was pretty sure it had to do with medications. So she cut all my dosages for several days to see if my numbers recovered. And they did, a little. Also, I wound up with a rash covering almost my whole face and scalp that I was pretty sure would never go away...until it did about 2 days later. I am still pulling large patches of dead skin out of my hair periodically (yeah, guess I really do need need those stupid pills after all).
Since the meds seemed to be the culprit, my dosages were re-upped and at the next blood draw, my blood counts maintained the same level, except my white blood cells and neutrophils. They dropped again (you may remember my neutrophils from past blogs about me worrying). With low neutrophils, I'm even more susceptible to infections than I normally am (normal being "pretty susceptible"). So I have another blood draw tomorrow, a week earlier than I'm usually scheduled. My doctor is calling Seattle about the whole thing. My worries include the following: that my neutrophils will be so low that I'll be instructed to be super-extra careful again like the post-transplant days, and that something more nefarious than medications is messing with blood counts (something that begins with an "L" and really, really sucks).
To play the bright side for a moment, I'm glad we took this camping trip before my doctor could tell me not to for whatever reason. Turns out, it is pretty hard to worry about anything when looking at an alpine lake just as blue as anything you've ever seen, surrounded by snow-covered peaks and the sweetest-smelling pines while sitting with your super-awesome husband, super-cute kid and trusty dog. So that was good.
Well, all this writing is getting my mind cranking up about tomorrow again, and frankly, I'm not ready to think about it yet. So I am abruptly ending this post here. I hope everyone is really enjoying the summer, wherever you are!
Anyway, we just got home from a lovely camping trip at the edge of the Mokulumne Wilderness. It was Luna's first, and thus a first for all of us as a family. There were amazing wildflowers, ginormous trees, new birds, bats, and lots of hiking. It was a fantastic, if slightly mosquito-y good time. Luna was completely beside herself. Every time we turned around, she was scaling granite boulder piles, or climbing on fallen trees, or was in the middle of a meadow picking flowers, or was climbing up a hill off-trail. This shows that a.) she was clearly born to be outdoors, and b.) we should probably be more attentive as parents, so we are not always pulling our daughter off the top of boulders, out of trees, etc.
Apparently, there is a way to get a fatigue-plagued, low blood-count-having, drug-addled, kind-of-complainy transplant patient to physically push herself a lot further than she has in a long time. I guess all I needed was an interpretive sign cheerfully posted at a trailhead in camp. The sign provided information on a couple of suggested hikes, the easiest being described as a moderate, 1.5 mile hike through cool pine forest and across a meadow of wildflowers, ending at a high alpine lake. The other suggested hike was one I had hiked before while backpacking (in, obviously, healthier times). I remembered it as steep, exposed, and long; and naturally chose the first hike. Brett, Luna, Topo and I set off triumphantly.
Now, once you have me on a trail, you really just have to rely on my stubbornness from a former life to keep me going. Even if the trail is longer than the cheerful sign had indicated (how is that even possible?! The Forest Service could have figured the mileage on their personal iPhones, for Pete's sake). Even if it is steeper than previously supposed. And more exposed. And climbing up to over 9000 ft in elevation. Keep in mind, I haven't even walked more than a couple of miles at sea level on flat ground in at least a year. And here I am on this mountain, saying, "Let's just go a little further until we can see where the trail goes." "Let's just go to that ridge and see if we can see the lake." "We've come so far already. Let's just keep going until we get there." By the time we finished that 5 mile hike, I must have been completely out of my mind. Because Luna was falling asleep, I suggested another hike to keep her awake. So we hiked up another trail looking for an old mine, and when we didn't find it, I suggested, "Let's just go a little further and see what the trail looks like." "Maybe it's off the trail, and we should just climb up this rock face here and see what's on the other side." "Well, it's not here; let's climb up and peek over that ridge." Brett was kind enough not to point out that I had no business doing any of this. And guess how I felt afterward.
GREAT! I mean, so I went to bed at about 7:30. So I am sunburned (I took every precaution, except, you know, "staying out of the sun"). So my legs are a little shaky. I feel like if we could have just stayed up there for say, a month, I could have kept going and going until I became practically my old self...or rather, another new version of my current self. Jessie 2.0. One with fewer bugs and less likely to crash.
But allow me to temper all this good news with my characteristic worrying. Right now, I'm starting to worry about my blood draw tomorrow. In July, the month that Blog forgot, my kidney function was getting progressively crappier. Then, at a couple of blood draws, all my numbers shot south (and I know that this was a dramatic drop because I recently put all my blood count numbers into an Excel spreadsheet and graphed them! There, I said it! I also added trendlines and R-squared values! Laugh all you like! I already know I'm a nerd!). This was concerning to all, but my doctor was pretty sure it had to do with medications. So she cut all my dosages for several days to see if my numbers recovered. And they did, a little. Also, I wound up with a rash covering almost my whole face and scalp that I was pretty sure would never go away...until it did about 2 days later. I am still pulling large patches of dead skin out of my hair periodically (yeah, guess I really do need need those stupid pills after all).
Since the meds seemed to be the culprit, my dosages were re-upped and at the next blood draw, my blood counts maintained the same level, except my white blood cells and neutrophils. They dropped again (you may remember my neutrophils from past blogs about me worrying). With low neutrophils, I'm even more susceptible to infections than I normally am (normal being "pretty susceptible"). So I have another blood draw tomorrow, a week earlier than I'm usually scheduled. My doctor is calling Seattle about the whole thing. My worries include the following: that my neutrophils will be so low that I'll be instructed to be super-extra careful again like the post-transplant days, and that something more nefarious than medications is messing with blood counts (something that begins with an "L" and really, really sucks).
To play the bright side for a moment, I'm glad we took this camping trip before my doctor could tell me not to for whatever reason. Turns out, it is pretty hard to worry about anything when looking at an alpine lake just as blue as anything you've ever seen, surrounded by snow-covered peaks and the sweetest-smelling pines while sitting with your super-awesome husband, super-cute kid and trusty dog. So that was good.
Well, all this writing is getting my mind cranking up about tomorrow again, and frankly, I'm not ready to think about it yet. So I am abruptly ending this post here. I hope everyone is really enjoying the summer, wherever you are!
Monday, June 27, 2011
Apparently, this is now a monthly blog
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
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, 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!
Monday, February 21, 2011
Still feeling joy, celebration and life and all that, but...
Hope everybody is enjoying their February! Depending on where you are, it seems they are saying it has been unseasonably warm or unseasonably cold. So if February doesn't typically appeal to you seasonably-wise, I guess you're in luck, or incredibly annoyed, or something. I can't wait to hear all the allusion and wordplay on "in like a lion, out like a lamb" in the news next month. Anyway.
So my ER recovery never really manifested itself in totality; I've been weak, tired, somewhat nauseous, and generally kind of crappy-feeling ever since. It's been making me think that other things are at play rather than cyclosporine dosage and painting a freaking miniature table set, so I recently looked into it. Well, I think it comes down to the following: I forgot to mention in my last post how I am seriously tapering my prednisone dosage. In the month of February, I have gone from 35 mg/day to 35 every other day, so it has essentially been cut in half (incrementally). Lately, I realize I'm feeling more like I was feeling...hmm...before I started taking prednisone. Now, I know I complained a lot about being on steroids in the first place. There is a lot about them that sucks. But I am now being made aware of the benefits of prednisone as well...primarily extra energy, motivation, and ability to eat. And here I had thought I was just getting better on my own. Oh well. This doesn't mean I won't recover on my own without steroids (geez, at least I hope not). It just means that first my body has to get used to producing its own steroids again and I'm going to feel crappy until it adjusts. I will stay on this dose until June, so there is time. The good news is: I have so far been allowed to keep the chipmunk cheeks. Hoorah.
In the wake of my ER visit, I had an appointment with my doctor and another CBC last week (that's a Complete Blood Count. I don't know if I've ever explained that before). My platelets had come up a little, and all my other counts were the same or better than before. So any associated freak-outs have been kept at bay. My cyclosporine dosage was lowered, then raised again and I didn't really notice any effects. All I know is my hands still have a tendency to shake like leaves most of the time and I'm not counting on that to go away anytime soon. Ridiculous hair growth continues unchecked. Most recent location: the back of my neck. I may actually get a real haircut soon! As for my counts, I have another CBC tomorrow so let's hope for the best.
In other news, my family was here this weekend and I had enough energy to have a great time, and to dance to John Denver. Luna had a fantastic time. She hadn't seen Jo since we got back from Seattle, I think. We may be moving. We've been renting for much longer then we intended and are fairly close to finally buying a house, but we are still working on it. I sure would like to feel kind of settled somewhere (this may be the first time in my life I've ever said- or even felt- that!). I'm looking forward to seeing some friends I haven't seen in a very long time over the next few weeks. Hopefully my next Ommaya doesn't screw that up. I received the most incredible scrapbook from a friend of my aunt. I can't even explain it. It's a work of art. If you come over, remind me to show it to you!
Well, I guess I should save my remaining energy in case I want to get up and walk across the room or something later :). Hope everyone is doing well! ~j
So my ER recovery never really manifested itself in totality; I've been weak, tired, somewhat nauseous, and generally kind of crappy-feeling ever since. It's been making me think that other things are at play rather than cyclosporine dosage and painting a freaking miniature table set, so I recently looked into it. Well, I think it comes down to the following: I forgot to mention in my last post how I am seriously tapering my prednisone dosage. In the month of February, I have gone from 35 mg/day to 35 every other day, so it has essentially been cut in half (incrementally). Lately, I realize I'm feeling more like I was feeling...hmm...before I started taking prednisone. Now, I know I complained a lot about being on steroids in the first place. There is a lot about them that sucks. But I am now being made aware of the benefits of prednisone as well...primarily extra energy, motivation, and ability to eat. And here I had thought I was just getting better on my own. Oh well. This doesn't mean I won't recover on my own without steroids (geez, at least I hope not). It just means that first my body has to get used to producing its own steroids again and I'm going to feel crappy until it adjusts. I will stay on this dose until June, so there is time. The good news is: I have so far been allowed to keep the chipmunk cheeks. Hoorah.
In the wake of my ER visit, I had an appointment with my doctor and another CBC last week (that's a Complete Blood Count. I don't know if I've ever explained that before). My platelets had come up a little, and all my other counts were the same or better than before. So any associated freak-outs have been kept at bay. My cyclosporine dosage was lowered, then raised again and I didn't really notice any effects. All I know is my hands still have a tendency to shake like leaves most of the time and I'm not counting on that to go away anytime soon. Ridiculous hair growth continues unchecked. Most recent location: the back of my neck. I may actually get a real haircut soon! As for my counts, I have another CBC tomorrow so let's hope for the best.
In other news, my family was here this weekend and I had enough energy to have a great time, and to dance to John Denver. Luna had a fantastic time. She hadn't seen Jo since we got back from Seattle, I think. We may be moving. We've been renting for much longer then we intended and are fairly close to finally buying a house, but we are still working on it. I sure would like to feel kind of settled somewhere (this may be the first time in my life I've ever said- or even felt- that!). I'm looking forward to seeing some friends I haven't seen in a very long time over the next few weeks. Hopefully my next Ommaya doesn't screw that up. I received the most incredible scrapbook from a friend of my aunt. I can't even explain it. It's a work of art. If you come over, remind me to show it to you!
Well, I guess I should save my remaining energy in case I want to get up and walk across the room or something later :). Hope everyone is doing well! ~j
Friday, February 11, 2011
Joy, celebration, life I feel!
At least such are the musings of Yoda from one of my birthday cards this year. I have decided to leave the card displayed prominently on my bookcase, because seriously, is there a better sentiment to wake up to every morning? And even if you don't feel that way at all, it is difficult to look Yoda in eye and tell him that you don't feel it at least a tiny bit. In the last couple weeks, I've actually been circling around that feeling!
Since a sufficient amount of time has passed since I thoroughly traumatized Brett with the story of the onset of my disease, I've decided its time to continue on with my mangled story. I may have mentioned that my doctor's appointments are now every other week, which is a good thing. It implies that nothing is really changing. Oh, except last week. First I had to have an immunoglobulin infusion. Why yes, of course I'll explain! *Be warned, this is all probably quite wrong since I just learned it myself.* Until my new cells become adept at making antibodies (and I quit foiling their efforts by taking immunosuppressants), my IgG numbers, which are a collective measure of all my innate immunities, will tend to be low. Now, these are evolutionarily ancient, non-specific immunities, like mucous membranes, tears, a number of blood cell, gut bacteria, skin, inflammation...basically just stuff that keeps stuff out. Then there is the adaptive immune system with it's target-specific immunities and pathogen memory. Those numbers, like my T-cells, B-cells, and lymphocytes and antibodies (for example) will come along on their own on their own time, and also when I start taking less pills! wonderful! pills!
SO, the infusion took about 3 hours and was a relaxing non-event. The following day was the dreaded Ommaya injection, which at the time was also non-event. Then all kinds of craziness hit the fan on Wednesday, I think? I can't even remember. The severe headache and backache was back, this time accompanied by constant vomiting. By Thursday night, I was in such a state I begged to go to the ER...I knew I needed fluids in a big way as I couldn't keep any water or food down. So my wonderful doctor arranged for my private ER room, where I was loaded up with IV goodies (actually, they had issues getting the fluids in and I ended up with only a small amount. I missed my port for about 0.0367 seconds). Also had IV painkillers and anti-emetics ...ahhh. They didn't actually admit me and let me go home after I felt better. I spent the next day in bed all day. Literally. My stepdad Jocko came down for the day today to help out too. THANK YOU!!
I think a lot of things led to the severe reaction. 1. I was a maniac on fire on Tuesday. I walked to and from the clinic, picked up a bunch of paint at the hardware store and painted Luna's table and chairs, cleaned, and went househunting. I hardly drank any water that day. Looking back, it was probably a little too much. 2. Apparently, my cyclosporine levels are high, which would explain the shaking like a leaf for the past week, and could explain the low appetite and vomiting. 3. I was taking all kinds of painkillers on an empty stomach because I couldn't eat and what the heck else was I to do? There isn't a single oral painkiller that doesn't make me sick. I have lately been considering going the less synthetic route, if you know what I mean. Will have to see about getting a prescription. In the meanwhile, we have to figure out what to do about these injections. Either I need more steroids during the 2-week course of the chemo release, or we should go back to the old way where I puke for 2 hours immediately, fall asleep for 4, and then go home. But this newer more toxic drug is more effective than the old one, and I only have 2 more. Decisions, decisions.
Then, on my Thursday ER blood draw, I found out my platelet counts have dropped by half. So I'm going to go ahead and try not to freak out about that for awhile. And here I hadn't thought about relapsing for at least a week. Sigh.
Anyway, all else seems okay for now. I have a few things to look forward to...which is nice and hopeful and optimistic and all that, but I am still too superstitious to write about them until they happen :P. Love to all and hope you're enjoying the wonderful weather!!
Oh my goodness! I forgot to mention that my podcast is up (shudder): http://www.patientpower.info/program/keeping-hope-alive-alternative-options-for-bone-marrow-transplant
Since a sufficient amount of time has passed since I thoroughly traumatized Brett with the story of the onset of my disease, I've decided its time to continue on with my mangled story. I may have mentioned that my doctor's appointments are now every other week, which is a good thing. It implies that nothing is really changing. Oh, except last week. First I had to have an immunoglobulin infusion. Why yes, of course I'll explain! *Be warned, this is all probably quite wrong since I just learned it myself.* Until my new cells become adept at making antibodies (and I quit foiling their efforts by taking immunosuppressants), my IgG numbers, which are a collective measure of all my innate immunities, will tend to be low. Now, these are evolutionarily ancient, non-specific immunities, like mucous membranes, tears, a number of blood cell, gut bacteria, skin, inflammation...basically just stuff that keeps stuff out. Then there is the adaptive immune system with it's target-specific immunities and pathogen memory. Those numbers, like my T-cells, B-cells, and lymphocytes and antibodies (for example) will come along on their own on their own time, and also when I start taking less pills! wonderful! pills!
SO, the infusion took about 3 hours and was a relaxing non-event. The following day was the dreaded Ommaya injection, which at the time was also non-event. Then all kinds of craziness hit the fan on Wednesday, I think? I can't even remember. The severe headache and backache was back, this time accompanied by constant vomiting. By Thursday night, I was in such a state I begged to go to the ER...I knew I needed fluids in a big way as I couldn't keep any water or food down. So my wonderful doctor arranged for my private ER room, where I was loaded up with IV goodies (actually, they had issues getting the fluids in and I ended up with only a small amount. I missed my port for about 0.0367 seconds). Also had IV painkillers and anti-emetics ...ahhh. They didn't actually admit me and let me go home after I felt better. I spent the next day in bed all day. Literally. My stepdad Jocko came down for the day today to help out too. THANK YOU!!
I think a lot of things led to the severe reaction. 1. I was a maniac on fire on Tuesday. I walked to and from the clinic, picked up a bunch of paint at the hardware store and painted Luna's table and chairs, cleaned, and went househunting. I hardly drank any water that day. Looking back, it was probably a little too much. 2. Apparently, my cyclosporine levels are high, which would explain the shaking like a leaf for the past week, and could explain the low appetite and vomiting. 3. I was taking all kinds of painkillers on an empty stomach because I couldn't eat and what the heck else was I to do? There isn't a single oral painkiller that doesn't make me sick. I have lately been considering going the less synthetic route, if you know what I mean. Will have to see about getting a prescription. In the meanwhile, we have to figure out what to do about these injections. Either I need more steroids during the 2-week course of the chemo release, or we should go back to the old way where I puke for 2 hours immediately, fall asleep for 4, and then go home. But this newer more toxic drug is more effective than the old one, and I only have 2 more. Decisions, decisions.
Then, on my Thursday ER blood draw, I found out my platelet counts have dropped by half. So I'm going to go ahead and try not to freak out about that for awhile. And here I hadn't thought about relapsing for at least a week. Sigh.
Anyway, all else seems okay for now. I have a few things to look forward to...which is nice and hopeful and optimistic and all that, but I am still too superstitious to write about them until they happen :P. Love to all and hope you're enjoying the wonderful weather!!
Oh my goodness! I forgot to mention that my podcast is up (shudder): http://www.patientpower.info/program/keeping-hope-alive-alternative-options-for-bone-marrow-transplant
Friday, February 4, 2011
Last part of the whole story (June 15, 2010)
Again from Facebook, back in the day.
So things have gotten, I don't know, more intense in the last few weeks. I've had 2 rounds of chemo since we last chatted. Recovery feels harder from each round. I have remained cancer-free in my cerebral-spinal fluid (I have special chemo into my head for that, and it sucks HORRIBLY, but thankfully, it works) and in my peripheral blood (veins and etc.). I had a bone marrow biopsy yesterday to see if I've stayed in remission in my marrow and haven't heard the results yet. Lets hope I have, otherwise I'll need another induction (just like my first month-long chemo blast) before I go to transplant. Oh, yeah. About that transplant.
Out of 4 potential stem cell donors, none of them made it past the second round of testing. So, that they were not well enough matched, had past exposures to viruses and/or other disease, or that they just plain decided not to do it are all potential reasons they are no longer available as donors for me. However, 2 matching umbilical cords were found. Almost perfectly matched, really. UCDMC doesn't do a lot of UC transplants for adults, so my doctor has referred me to a facility with more experience, specifically, the Fred Hutchinson Cancer Research Center in Seattle. So, we'll be trying to arrange a consultation there absolutely asap. We would have to be in Seattle for 4 months, so they can monitor my recovery after the 1 month hospital stay. Interesting! The Hutch Center has awesome apartments for patients to rent, and insurance will pay for a good part of that. So I'm sort of excited. I've also read just about every paper about cord blood transplants and current research that I can find, and I am more than confident in the procedure. Although still, anything can happen. The transplant should start in about a month. Anyone been planning a vacay in Seattle this summer?
I suppose I should also address "How am I doing?" That is always a very difficult question to answer. I am okay, but I have a new definition of "okay." It involves being okay with a lot of random pains, weakness, and exhaustion. So I'm fine, but I still feel like I am sick to some degree all of the time. Generally I am okay with it, but sometimes it is incredibly frustrating and otherwise just pisses me off. This is something I no longer feeling guilty about...not always "being positive" or "keeping my spirits up." Sometimes my anger is a very productive emotion. I don't particularly care if that is "healthy" or not. I am still entirely determined to everything I can to get well. I am, however, always able to shift my perspective to a more grateful and happy one when I am really down in the dumps. It might take a day or two. Yoga has taught me a lot about that. I feel very fortunate to have the extension of time I already have had (I probably would not have made it this far without treatment). So much quality time with family and friends. Also, insurance will pay for wigs, I just discovered! I have bought 2 and am probably getting one more. They are so fun!!
I plan on letting everyone know when we finalize transplant plans, and keeping in touch through the process. But you should remain dubious that I will be very good about that. I'm almost done reading Sookie Stackhouse books, so I'll certainly have more time, anyway.
Love to all and thanks again so much for the help and support. It has been invaluable. A special thanks too to those who have gotten involved in LLS and Team in Training. I get teary whenever I think about it; and I don't even know what to say. So thanks a lot :P ~jq
For the record, I did stay in remission. For those who are really not paying attention, I did go to Seattle and have a transplant. Also, the "shifting of my perspective" from anger and frustration when things got rough got harder, and harder. Acceptance helped. I seem to be much better now. We are now officially caught up. Next blog we will return to our regularly scheduled programming.
So things have gotten, I don't know, more intense in the last few weeks. I've had 2 rounds of chemo since we last chatted. Recovery feels harder from each round. I have remained cancer-free in my cerebral-spinal fluid (I have special chemo into my head for that, and it sucks HORRIBLY, but thankfully, it works) and in my peripheral blood (veins and etc.). I had a bone marrow biopsy yesterday to see if I've stayed in remission in my marrow and haven't heard the results yet. Lets hope I have, otherwise I'll need another induction (just like my first month-long chemo blast) before I go to transplant. Oh, yeah. About that transplant.
Out of 4 potential stem cell donors, none of them made it past the second round of testing. So, that they were not well enough matched, had past exposures to viruses and/or other disease, or that they just plain decided not to do it are all potential reasons they are no longer available as donors for me. However, 2 matching umbilical cords were found. Almost perfectly matched, really. UCDMC doesn't do a lot of UC transplants for adults, so my doctor has referred me to a facility with more experience, specifically, the Fred Hutchinson Cancer Research Center in Seattle. So, we'll be trying to arrange a consultation there absolutely asap. We would have to be in Seattle for 4 months, so they can monitor my recovery after the 1 month hospital stay. Interesting! The Hutch Center has awesome apartments for patients to rent, and insurance will pay for a good part of that. So I'm sort of excited. I've also read just about every paper about cord blood transplants and current research that I can find, and I am more than confident in the procedure. Although still, anything can happen. The transplant should start in about a month. Anyone been planning a vacay in Seattle this summer?
I suppose I should also address "How am I doing?" That is always a very difficult question to answer. I am okay, but I have a new definition of "okay." It involves being okay with a lot of random pains, weakness, and exhaustion. So I'm fine, but I still feel like I am sick to some degree all of the time. Generally I am okay with it, but sometimes it is incredibly frustrating and otherwise just pisses me off. This is something I no longer feeling guilty about...not always "being positive" or "keeping my spirits up." Sometimes my anger is a very productive emotion. I don't particularly care if that is "healthy" or not. I am still entirely determined to everything I can to get well. I am, however, always able to shift my perspective to a more grateful and happy one when I am really down in the dumps. It might take a day or two. Yoga has taught me a lot about that. I feel very fortunate to have the extension of time I already have had (I probably would not have made it this far without treatment). So much quality time with family and friends. Also, insurance will pay for wigs, I just discovered! I have bought 2 and am probably getting one more. They are so fun!!
I plan on letting everyone know when we finalize transplant plans, and keeping in touch through the process. But you should remain dubious that I will be very good about that. I'm almost done reading Sookie Stackhouse books, so I'll certainly have more time, anyway.
Love to all and thanks again so much for the help and support. It has been invaluable. A special thanks too to those who have gotten involved in LLS and Team in Training. I get teary whenever I think about it; and I don't even know what to say. So thanks a lot :P ~jq
For the record, I did stay in remission. For those who are really not paying attention, I did go to Seattle and have a transplant. Also, the "shifting of my perspective" from anger and frustration when things got rough got harder, and harder. Acceptance helped. I seem to be much better now. We are now officially caught up. Next blog we will return to our regularly scheduled programming.
Thursday, February 3, 2011
Another part of the whole story (April 15, 2010)
This was my first update after my 30-day induction therapy. I posted it on Facebook, but I don't think all the readers of this blog are on my Facebook page, so I wanted to have this here as well.
It's kind of like I'm on hiatus right now and am airing old episodes, isn't it?
Today I finally turned on my computer and phone. I know, I know, typical. I'm still playing the cancer card though so...
So I have been at home for a few days, and while it is great to be here, it a little frustrating to realize that I am still pretty sick. The effects of the chemo, and maybe moreso, the effects of being in a bed for a month (hardly even holding up my head), make day to day things pretty challenging. More mentally that physically, probably. I am incredibly weak and tired. BUT I am getting a little stronger each day I think, and am generally off most of my pain meds except occasional Tylenol. My doctor appt. on Tuesday confirmed that my blood counts have come up a lot, practically normal in a couple of cases, so that is good. But it also means I'm ready for more chemo! So, back to the hospital on Tuesday for a 5-6 day stay and 3 days of chemo infusion. Because its a less intense regimen, I should be able to go home right after. Then 28 days later we do it again, and so on for a max of 4 cycles. If I find a matched bone marrow donor during these cycles, that will be done right away in lieu of completing the 4 cycles. If not, after the 4 cycles, we just wait and hope for the best (no relapse) until a donor is found. If no donor is found, there are couple of other options for transplant (cord blood, less matched donors, etc.). These are less effective and/or more risky, so they'll have to weigh that decision out with my risk of relapse. Which I'm told might be intermediate to high. But there is a lot of uncertainty in predicting these things. By the way, THANK YOU to everyone that has signed up to be a marrow donor. I hope there are a few matches amongst you guys for someone in need, even if it isn't me. If you're thinking you still want to do something but the marrow donation isn't quite it, perhaps still consider donating blood or platelets. I received probably 5 transfusions of both from as many people during my hospital stay and I try to remember to be grateful to them every day.
In other news, I am enjoying my bald head, although it gets quite cold. How do you dudes manage that? Do you just get used to it? I have a funky wig courtesy of Jen Hunter that is pretty fun, and a growing collection of scarves. Luna could care less about my lack of hair. She points and says, "No hair. Fix it later." She also pointed out the hole in my collar bone from my central line and informed me that I have an owie, and: "Luna fix it. Luna help. Later." So, I'm still waiting on that :). Brett is back at work, occasionally, which makes me happy for him. He is juggling and taking care of so much that my head reels to think about it. Same with my sister Jo, who is here helping with Luna while she also works on her teaching credential, and my mom who spent her spring break here...and my aunts... I don't even know how to thank these crazy people. And the rest of you with your notes and gifts and time and help...seriously, who ARE you people? You are too much.
So, a small and incredibly modified yoga practice here and there, a lovely massage from a lovely friend, and visits from friends and family willing to watch me slump on the couch and complain :P while Luna brings them an endless procession of books ("Read this.") are making me feel a little more light every day. As well as reading through the stacks of books and magazines and DVDs I was gifted with. Particularly the first season of True Blood.
Is there something wrong with me that I love watching a TV series that centers around vampires and talks constantly of blood when I have a serious blood disease? Quite possibly there is, but if you know me, you knew that already.
love to all, jq
It's kind of like I'm on hiatus right now and am airing old episodes, isn't it?
Today I finally turned on my computer and phone. I know, I know, typical. I'm still playing the cancer card though so...
So I have been at home for a few days, and while it is great to be here, it a little frustrating to realize that I am still pretty sick. The effects of the chemo, and maybe moreso, the effects of being in a bed for a month (hardly even holding up my head), make day to day things pretty challenging. More mentally that physically, probably. I am incredibly weak and tired. BUT I am getting a little stronger each day I think, and am generally off most of my pain meds except occasional Tylenol. My doctor appt. on Tuesday confirmed that my blood counts have come up a lot, practically normal in a couple of cases, so that is good. But it also means I'm ready for more chemo! So, back to the hospital on Tuesday for a 5-6 day stay and 3 days of chemo infusion. Because its a less intense regimen, I should be able to go home right after. Then 28 days later we do it again, and so on for a max of 4 cycles. If I find a matched bone marrow donor during these cycles, that will be done right away in lieu of completing the 4 cycles. If not, after the 4 cycles, we just wait and hope for the best (no relapse) until a donor is found. If no donor is found, there are couple of other options for transplant (cord blood, less matched donors, etc.). These are less effective and/or more risky, so they'll have to weigh that decision out with my risk of relapse. Which I'm told might be intermediate to high. But there is a lot of uncertainty in predicting these things. By the way, THANK YOU to everyone that has signed up to be a marrow donor. I hope there are a few matches amongst you guys for someone in need, even if it isn't me. If you're thinking you still want to do something but the marrow donation isn't quite it, perhaps still consider donating blood or platelets. I received probably 5 transfusions of both from as many people during my hospital stay and I try to remember to be grateful to them every day.
In other news, I am enjoying my bald head, although it gets quite cold. How do you dudes manage that? Do you just get used to it? I have a funky wig courtesy of Jen Hunter that is pretty fun, and a growing collection of scarves. Luna could care less about my lack of hair. She points and says, "No hair. Fix it later." She also pointed out the hole in my collar bone from my central line and informed me that I have an owie, and: "Luna fix it. Luna help. Later." So, I'm still waiting on that :). Brett is back at work, occasionally, which makes me happy for him. He is juggling and taking care of so much that my head reels to think about it. Same with my sister Jo, who is here helping with Luna while she also works on her teaching credential, and my mom who spent her spring break here...and my aunts... I don't even know how to thank these crazy people. And the rest of you with your notes and gifts and time and help...seriously, who ARE you people? You are too much.
So, a small and incredibly modified yoga practice here and there, a lovely massage from a lovely friend, and visits from friends and family willing to watch me slump on the couch and complain :P while Luna brings them an endless procession of books ("Read this.") are making me feel a little more light every day. As well as reading through the stacks of books and magazines and DVDs I was gifted with. Particularly the first season of True Blood.
Is there something wrong with me that I love watching a TV series that centers around vampires and talks constantly of blood when I have a serious blood disease? Quite possibly there is, but if you know me, you knew that already.
love to all, jq
Wednesday, February 2, 2011
The Whole Story
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| 3 days before the shiz hit the fan. |
Birthdays are for self-indulgent retrospection, hence this post. Some of you know and some of you don't know the events leading up to my AML diagnosis in the first place. So I thought I'd go ahead and catch you up, and in separate posts, I'll also include the 2 Facebook notes I wrote during my initial chemotherapy treatments. I'm sitting here in the Infusion Center getting a fill-up on immunoglobulins for the next few hours, doped up on Benadryl, so hey! I've got the time. So let's take a walk down memory lane and see how well I tolerate post-traumatic stress.
It all began around Thanksgiving of 2009. I just started losing my appetite. No foods looked or sounded good. Now, this is NOT NORMAL for me. Normally, I was hungry for whatever, whenever, just put it in front of me so I can get it in my face already, thank you. Concomitant to the appetite loss, I was losing weight. Probably about 10 or 15 pounds over the next 2 months. Sadly, I was too vain to actually worry about it in any major way. I mean, I actually looked pretty good. Although I did entertain thoughts of going to a naturopath or something to make sure I was getting enough nutrition (and of course, I never actually went). In every way, I felt fine. I was practicing yoga almost daily, teaching up to 5 days a week, working 20 hours a week environmental consulting, and taking care of Luna the rest of the time. I would occasionally hear a "wooshing" noise in my ears when I was upside down in yoga, or laying in bed, but it wasn't bothersome enough to really care about.
In early February, in the fact the day of the Superbowl that year, Brett and Luna and I were biking around looking for a restaurant where we wouldn't have to watch the Superbowl. On the bike ride, I noticed my vision in one eye was funny and glimmery. It didn't go away that day, or the next, so I marched myself down to the eye doctor who said there was nothing wrong. Perhaps an ocular migraine (and I do have a history of migraines). 2 days later, the glimmering coalesced into a large orange spot in the center of my vision that distorted the shape and color of everything around it. I went back to the eye doctor, and this time was diagnosed with central cerous retinopathy. Basically "bubbles" from ruptured vessels filling with fluid on the retina. I was told it was rare in women (10% of cases, and is usually related to stress or corticosteroid use). Almost always it affects just one eye. There was no treatment, but it would go away on its own in about 6 months. Bleh, but livable.
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| Post eye exam freak show |
It's not fun to talk about the culminating event that lead me to the hospital on March 14, 2010. It's embarrassing. I wish I would have just passed out from anemia or something. Or that an astute eye doctor finally did a blood test. But no...it had to be this way:
Two weeks later, I got sick. Woke up with a fever and a pain in my -ah- rectum. I assumed it was some sort of -um- hemorrhoidal situation, although I couldn't see anything. The fever went down, but the pain continued and intensified despite every home remedy in the book. There was some -oh, lets say "evidence"- that suggested that there might be an internal abscess that ruptured. After 4 days of soldiering through some of the worst pain I had felt up until then (except childbirth), a friend suggested I see a doctor. Well, hey! There's an idea. It was, of course, Sunday by then, so we called around and found the least crowded ER. Happened to be UCDMC, thankfully, and I went right in. The first team of doctors came into my shower curtain room to tell me that my blood counts were normal and they weren't sure what was wrong yet until they could examine the-uh-area (which they couldn't examine because every time they even breathed on it I screamed and hurled myself 4 feet away). Just as we were were heaving a sigh of relief and returning to my Sookie Stackhouse novel (which Brett had to read to me since I couldn't see), a lone resident came in, crouched down next to me, and told me a hemaoncologist had looked at my blood on a smear and seen a high percentage of leukemia blasts, and that I had leukemia. No "maybe" or "we'd like to test you for..." just, "You have leukemia." It was an acute (fast acting) case, so not only would I not be leaving the hospital today, I would also be heading straight up to the oncology floor to start chemotherapy ASAP.
The rest of the next couple days is bits and pieces and huge blanks spaces in my memory. Because of my eye problems, they checked my cerebral spinal fluid through a lumbar puncture. Leukemia there. Because of the rectal pain, an MRI to check my lower organs. Leukemia had infiltrated and inflamed everything in my lower pelvis. My cytogenetics revealed 2 mutations in the leukemic cells: Trisomy +8, and MLL amplification, both of which carried a not-so-good prognosis. They were already talking about how chemo alone would probably keep me in remission for less than a year at best; I would need a stem cell transplant. I was terrified, even though I hardly knew what one was.
The first stay in the hospital lasted 30 days, to receive and recover from extremely high doses of 5 different types of chemotherapy. There was an IV catheter installation that went amiss and atrial fibrulations and heart monitors and external pacemakers just in case. There were bone marrow biopsies and chemo drips and painkillers and anti-anxiety meds and headaches from repeated lumbar punctures. Thankfully, I achieved remission in about 14 days. No leukemia in my cerebral spinal fluid, inflammation gone from my organs, complete remission. Also, my eyes mostly healed (I can see fine, and my vision tests perfect, but there is a little distortion). To make sure no interlopers would spring up, I had one consolidation treatment a month for the next 4 months (which involved 5-day hospital stays to receive high doses of 1 type of chemo), which was the maximum people have for AML. I was also regularly receiving chemo into my cerebral spinal fluid, first through my spine, then into my shiny new Ommaya reservoir installed in my head. Besides the chemo, I had many additional hospitalizations due to fevers I'd get when my blood counts went down. In the meanwhile, we weren't having much luck finding a stem cell donor.
So I think that brings us up to speed. I'll post my notes from the 5 months of chemo soon. There are only 2 of them. And you think this blog is lackadaisical. See how bad I used to be?! Thanks for following me on this crazy journey.
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| Post chemo, going home |
Oh yeah,
For those who follow them, my counts are good this week. Everything is up, although slightly. WBC 3.6, hemoglobin 12.6, hematocrit 36.4 (these 2 are actually in the low end of the normal range now), platelets 133 (also low end of normal) and neutrophils 2480. Tomorrow, I get yet another Ommaya injection. Yay.
love jess
Wednesday, January 19, 2011
Frankly, I don't know what to title this one.
I guess you could say we are "settling in." For me, that has involved very little "settling." Brett went back to work part time, and is approaching full time, and I have been leading a semi-normal existence which doesn't actually feel normal yet. By "normal," I mean I get out of bed, drive or walk around doing errands, play outside with Luna and Topo (who just came home last week), catch up with friends, get Luna and I fed, and remember to take my medicines on my own. Which just reminds me, I forgot to take my noon pills today. Don't worry though, they're just vitamins I can take tonight. Although I'm late on those (you can see this is going really well). I'm trying.
This week in normalcy was sponsored by Brett's parents, who came for a visit and took Luna off our hands several times, and cooked us food and helped Brett do home improvements on the Tahoe Park house. My parents were here over the weekend helping out, and introducing me to the frozen yogurt place around the corner, which for some reason I'd never been to. So we had a full house a couple of nights, which was fun. I even had a dinner date with Brett. I can go to public places when they are not too full, so it was an early dinner, home by 8. I swear its because of my immuno-suppression, not because we're old and boring.
My clinic visits are still once a week. We started to taper my prednisone, but the rash came back in new and interesting places. So now I'm back at my normal dose. Which means I continue to swell up like the Michelin (I don't feel like checking the spelling on that) Man. I feel as though my face is sometimes unrecognizable, but I'm probably exaggerating. A lot of it is water retention, and a lot of it is that I eat a lot. The prednisone makes me do it. I've gained 10 pounds since I've been home! Granted, I have been slightly underweight for a long time, but I had gotten used to it. The rash is gone now though, so I may get to try another taper soon. I really want my cheekbones, waistline and jawline back. How lame and shallow is that. I am also hairy, a side-effect from both my cyclosporine and prednisone. You would think that's a good thing for someone who lost all their hair recently. But I mean hair and then some. Especially my arms and face. My eyebrows and eyelashes are thicker, my arm hairs are creeping onto my hands, I have these sideburns now and I think I'm getting a beard. Seriously. It's blond, so you can't see it except in certain lighting, but I really don't know where it's headed.
Let's delude ourselves into thinking that my weight gain is all muscle from all the walking and yoga I've been doing. I've done a few 75-minute yoga practices using podcasts from Zuda (my lovely yoga studio <3). I feel like I'm starting over, but at the same time, it's one of the only things that has felt familiar in my body in a very long time. It's the first time I've done a full yoga practice since March 12, 2010. Prior to that, I practiced almost every day and taught about 5 times a week. So this is a big step for me. I don't know how it will go at the end of the month when I have to get my next Ommaya injection, though. Not a good time to be upside down. Sigh.
On another extremely crappy note, I recently found out that Mandi Schwartz, who has been mentioned in this blog before (she is often written about in the New York Daily News and New York Times) relapsed in mid-December, and is discontinuing treatment. We both had cord transplants on the same day, and then lived on the same floor at the Pete Gross house after we discharged. We never really talked, although both Brett and I always meant to strike something up (yes, we are socially-challenged people. Thank god we have Luna). As a patient, you come to recognize people who want to talk, and those who don't. I think those who are more sociable are generally doing fairly well. Mandi and her mom were very polite, but didn't seem to want to chat in the elevator or anything. But I often compared my progress to Mandi's by observation. I thought were doing the same. We both had our little portable IV fluid bags on in the morning, we would both slog ourselves slowly up the hill to clinic rather than taking the shuttle, I saw her moon face when she started prednisone. I can't stop thinking about her. I know now from the articles I've read that our prognoses were very different but I feel- I don't know- guilty or something. And just sad. As I still think of her as my companion in transplant, I find I'm worrying over my own condition and blood counts more and more, even when my doctor says they're fine. I don't feel at all safe in my healing. I don't know if I mentioned it before, but I feel the need to mention now how much this disease just BLOWS.
Okay, on a less crappy note, I'm going to be part of an interview for a webcast/podcast on "Patient Power" (http://www.patientpower.info/). It will be about new types of stem cell transplants (cords and haplo or half-matched transplants), and will include a doctor (coincidentally, my doctor part of the time while I was in the hospital) and another patient I believe. The researcher that ran my clinical trial suggested me for the interview apparently. I have no idea why. I did read in one of my files that one doctor described me as "eloquent," which I didn't realize would be the type of thing one would write in a patient's medical file, but maybe that's why. When she asked me, however, I didn't mention that I don't remember the first 18 days after transplant. And these days, I can hardly form a coherent sentence half the time. Hope that won't be an issue. So anyway, you can tune in to the website on January 31st at 2 p.m. PST and hear me make an idiot of myself.
You're probably thinking, "Why are you still writing? Do you think I have all the time in the world to waste on this? And anyway, you need to go take your meds already, you're already late." You're right.
xoxo, jess
This week in normalcy was sponsored by Brett's parents, who came for a visit and took Luna off our hands several times, and cooked us food and helped Brett do home improvements on the Tahoe Park house. My parents were here over the weekend helping out, and introducing me to the frozen yogurt place around the corner, which for some reason I'd never been to. So we had a full house a couple of nights, which was fun. I even had a dinner date with Brett. I can go to public places when they are not too full, so it was an early dinner, home by 8. I swear its because of my immuno-suppression, not because we're old and boring.
My clinic visits are still once a week. We started to taper my prednisone, but the rash came back in new and interesting places. So now I'm back at my normal dose. Which means I continue to swell up like the Michelin (I don't feel like checking the spelling on that) Man. I feel as though my face is sometimes unrecognizable, but I'm probably exaggerating. A lot of it is water retention, and a lot of it is that I eat a lot. The prednisone makes me do it. I've gained 10 pounds since I've been home! Granted, I have been slightly underweight for a long time, but I had gotten used to it. The rash is gone now though, so I may get to try another taper soon. I really want my cheekbones, waistline and jawline back. How lame and shallow is that. I am also hairy, a side-effect from both my cyclosporine and prednisone. You would think that's a good thing for someone who lost all their hair recently. But I mean hair and then some. Especially my arms and face. My eyebrows and eyelashes are thicker, my arm hairs are creeping onto my hands, I have these sideburns now and I think I'm getting a beard. Seriously. It's blond, so you can't see it except in certain lighting, but I really don't know where it's headed.
Let's delude ourselves into thinking that my weight gain is all muscle from all the walking and yoga I've been doing. I've done a few 75-minute yoga practices using podcasts from Zuda (my lovely yoga studio <3). I feel like I'm starting over, but at the same time, it's one of the only things that has felt familiar in my body in a very long time. It's the first time I've done a full yoga practice since March 12, 2010. Prior to that, I practiced almost every day and taught about 5 times a week. So this is a big step for me. I don't know how it will go at the end of the month when I have to get my next Ommaya injection, though. Not a good time to be upside down. Sigh.
On another extremely crappy note, I recently found out that Mandi Schwartz, who has been mentioned in this blog before (she is often written about in the New York Daily News and New York Times) relapsed in mid-December, and is discontinuing treatment. We both had cord transplants on the same day, and then lived on the same floor at the Pete Gross house after we discharged. We never really talked, although both Brett and I always meant to strike something up (yes, we are socially-challenged people. Thank god we have Luna). As a patient, you come to recognize people who want to talk, and those who don't. I think those who are more sociable are generally doing fairly well. Mandi and her mom were very polite, but didn't seem to want to chat in the elevator or anything. But I often compared my progress to Mandi's by observation. I thought were doing the same. We both had our little portable IV fluid bags on in the morning, we would both slog ourselves slowly up the hill to clinic rather than taking the shuttle, I saw her moon face when she started prednisone. I can't stop thinking about her. I know now from the articles I've read that our prognoses were very different but I feel- I don't know- guilty or something. And just sad. As I still think of her as my companion in transplant, I find I'm worrying over my own condition and blood counts more and more, even when my doctor says they're fine. I don't feel at all safe in my healing. I don't know if I mentioned it before, but I feel the need to mention now how much this disease just BLOWS.
Okay, on a less crappy note, I'm going to be part of an interview for a webcast/podcast on "Patient Power" (http://www.patientpower.info/). It will be about new types of stem cell transplants (cords and haplo or half-matched transplants), and will include a doctor (coincidentally, my doctor part of the time while I was in the hospital) and another patient I believe. The researcher that ran my clinical trial suggested me for the interview apparently. I have no idea why. I did read in one of my files that one doctor described me as "eloquent," which I didn't realize would be the type of thing one would write in a patient's medical file, but maybe that's why. When she asked me, however, I didn't mention that I don't remember the first 18 days after transplant. And these days, I can hardly form a coherent sentence half the time. Hope that won't be an issue. So anyway, you can tune in to the website on January 31st at 2 p.m. PST and hear me make an idiot of myself.
You're probably thinking, "Why are you still writing? Do you think I have all the time in the world to waste on this? And anyway, you need to go take your meds already, you're already late." You're right.
xoxo, jess
Monday, January 3, 2011
Home
After 4 days home, I am still too conflicted to write about it. But get this: I'm still going to write about it! Because I want to be a good, responsible blogger. That, and I really don't have a whole lot else I can do around here. Let me back up just a little to report that my final tests in Seattle revealed I'm doing fairly well. There are a couple of little issues which I'll discuss later. But no loss of lung, liver, heart or kidney function which is great. Unless the GVHD gets to them, but let's not go there till we have to. The prednisone is working for now, so I can start to taper down on the dose a little. And I have a new medication that replaces 6 giant pills a day with 2 little ones. Awesome! My medicine cabinet still looks like a pharmacy, but every little bit helps. Also, it was pointed out to me that I now have 2 sets of DNA. My blood DNA is totally different than DNA taken from my hair or skin or wherever else. The DNA in my blood would match some kid in Australia's, but the rest of it is my own. My blood type has also switched from O+ to O-. The universal donor, if I could donate. For Pete's sake, what a freak show.
So, being home. I must say, we had really gotten used to our minimalist life in Seattle, similar to when we lived in New York. Plus, I had Brett and Luna and Jo and Jen and Mike and Nico there, plus family and friends coming to visit regularly, so I didn't really feel like I was "away" in Seattle. It got homey. Not to mention that my every day was scheduled and printed out for me. Coming back to our house full of stuff felt cluttered and heavy with the weight and turbulence of the last year, and there is this chaotic feeling of several months that have to be planned day by day since we haven't figured out how to organize our lives with Brett's return to work, my health and ability to take care of Luna alone, and to eventually work again... So, Brett and I spent a cathartic New Year's Eve packing a bunch of useless stuff up for donation or throwing it away. We purged several bags of stuff, and had the restraint not to give in to Brett's musing that we just take everything out of the house into the street and burn it and start all over. I know that escape from cruddy memories isn't really possible, no more than the escape from some mourning of memories of the time when life seemed "normal;" however...a nice bonfire was tempting. And I would really like some new furniture. But everywhere is a little "haunted" for me at the moment. Today, we had to drop my files off at the UCDMC Cancer Center, where I began and will now continue treatment. Luna asked if I had to go live at the hospital again. I was similarly spooked being back there.
Luna was so excited to be home, especially in the backyard. That kid loves being outside and exploring. She also has all of her old toys here, which apparently require being removed one by one from wherever they are kept and spread across the house so she can see them all. She's such a happy, adaptable little girl...we are just too lucky. Except when she's being a jerk, which luckily isn't that often, and is considerably less often than her parents.
There is also the incredible awesomeness of seeing my friends here again. That's when I feel really happy to be here. I have said it a million times before, but I have no idea how we've been able to surround ourselves with people like these. Topo is not home yet, but hopefully will be later this month. It's hard to feel totally complete without him around. I haven't seen him in 6 months.
So on the health front, I ended up having another Ommaya injection 2 days before we left Seattle, and am dealing with the normal issues from that. Which suck, but they're not quite as bad as before. I haven't had to stay in bed all day, anyway. It's incredibly important that I exercise now, because the steroids I take, and the fact that I am technically post-menopausal from my treatments (which was expected), both contribute to bone loss. I had a bone density scan before I left Seattle, and they detected some demineralization of the bone in my left hip (which has been shoddy for a couple of years now anyway, so I wasn't hugely surprised). So I take my supplements and blah blah blah, and have gone on a couple of walks. Walks in the flat lands are very different than Seattle walks, by the way. But this initial walking is mild preparation, really, for getting back to yoga and more weight-bearing exercise. Unfortunately, for how active I have been in my life, I dread the thought of physical activity now. It just makes me so wiped out afterwards (not in a good way), and I'm so weak and pathetic during the whole ordeal. For example, on today's walk, I tried to "trot" across the street to avoid a car. Well, apparently my legs do not remember how to run. They wouldn't spring back up. So as I ran, I just got lower and lower to the ground. I thought I was going to end up in the gutter by the time I reached the other side of the street. It was devastating. Although, recounting the incident later, I also realize it was hilarious.
I have an appointment with my doctor tomorrow, and I'll probably have appointments once a week for some time. They're basically just monitoring my medication concentrations, blood counts, GVHD, and the status of viruses I already have that are currently latent, but could activate at any time while I'm on immunosuppressants. Less frequent visits are good, since I had my central line pulled in Seattle and now have to have peripheral blood draws. I saved the line; maybe I'll post a picture of it. The docs were fairly confused when I asked if I could keep it. But we spent a lot of time caring for it and cleaning it and adjusting my wardrobe for it...plus, I got all kinds of good stuff out of that thing! Of course I'm keeping it. Also, it's just a trip that it was IN MY HEART.
Anyway, given my physical exertions today, that's all I can manage blogwise. Being in Seattle wasn't bad, and being back in Sacramento is good too. Being anywhere is good. There is a lot of love in my life that makes that possible. Cheesy, isn't it?
~j
So, being home. I must say, we had really gotten used to our minimalist life in Seattle, similar to when we lived in New York. Plus, I had Brett and Luna and Jo and Jen and Mike and Nico there, plus family and friends coming to visit regularly, so I didn't really feel like I was "away" in Seattle. It got homey. Not to mention that my every day was scheduled and printed out for me. Coming back to our house full of stuff felt cluttered and heavy with the weight and turbulence of the last year, and there is this chaotic feeling of several months that have to be planned day by day since we haven't figured out how to organize our lives with Brett's return to work, my health and ability to take care of Luna alone, and to eventually work again... So, Brett and I spent a cathartic New Year's Eve packing a bunch of useless stuff up for donation or throwing it away. We purged several bags of stuff, and had the restraint not to give in to Brett's musing that we just take everything out of the house into the street and burn it and start all over. I know that escape from cruddy memories isn't really possible, no more than the escape from some mourning of memories of the time when life seemed "normal;" however...a nice bonfire was tempting. And I would really like some new furniture. But everywhere is a little "haunted" for me at the moment. Today, we had to drop my files off at the UCDMC Cancer Center, where I began and will now continue treatment. Luna asked if I had to go live at the hospital again. I was similarly spooked being back there.
Luna was so excited to be home, especially in the backyard. That kid loves being outside and exploring. She also has all of her old toys here, which apparently require being removed one by one from wherever they are kept and spread across the house so she can see them all. She's such a happy, adaptable little girl...we are just too lucky. Except when she's being a jerk, which luckily isn't that often, and is considerably less often than her parents.
There is also the incredible awesomeness of seeing my friends here again. That's when I feel really happy to be here. I have said it a million times before, but I have no idea how we've been able to surround ourselves with people like these. Topo is not home yet, but hopefully will be later this month. It's hard to feel totally complete without him around. I haven't seen him in 6 months.
So on the health front, I ended up having another Ommaya injection 2 days before we left Seattle, and am dealing with the normal issues from that. Which suck, but they're not quite as bad as before. I haven't had to stay in bed all day, anyway. It's incredibly important that I exercise now, because the steroids I take, and the fact that I am technically post-menopausal from my treatments (which was expected), both contribute to bone loss. I had a bone density scan before I left Seattle, and they detected some demineralization of the bone in my left hip (which has been shoddy for a couple of years now anyway, so I wasn't hugely surprised). So I take my supplements and blah blah blah, and have gone on a couple of walks. Walks in the flat lands are very different than Seattle walks, by the way. But this initial walking is mild preparation, really, for getting back to yoga and more weight-bearing exercise. Unfortunately, for how active I have been in my life, I dread the thought of physical activity now. It just makes me so wiped out afterwards (not in a good way), and I'm so weak and pathetic during the whole ordeal. For example, on today's walk, I tried to "trot" across the street to avoid a car. Well, apparently my legs do not remember how to run. They wouldn't spring back up. So as I ran, I just got lower and lower to the ground. I thought I was going to end up in the gutter by the time I reached the other side of the street. It was devastating. Although, recounting the incident later, I also realize it was hilarious.
I have an appointment with my doctor tomorrow, and I'll probably have appointments once a week for some time. They're basically just monitoring my medication concentrations, blood counts, GVHD, and the status of viruses I already have that are currently latent, but could activate at any time while I'm on immunosuppressants. Less frequent visits are good, since I had my central line pulled in Seattle and now have to have peripheral blood draws. I saved the line; maybe I'll post a picture of it. The docs were fairly confused when I asked if I could keep it. But we spent a lot of time caring for it and cleaning it and adjusting my wardrobe for it...plus, I got all kinds of good stuff out of that thing! Of course I'm keeping it. Also, it's just a trip that it was IN MY HEART.
Anyway, given my physical exertions today, that's all I can manage blogwise. Being in Seattle wasn't bad, and being back in Sacramento is good too. Being anywhere is good. There is a lot of love in my life that makes that possible. Cheesy, isn't it?
~j
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