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
Monday, February 21, 2011
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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