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
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