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
 |
| 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.
 |
| 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.
 |
| 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
Subscribe to:
Posts (Atom)