Day +61

I had a good appointment with the PA today. Not necessarily good in terms of news, but good in terms of me feeling better about things and getting some clarification. Katie also reminded me that I can call at any time with questions. I know that, but it really makes a big difference for a provider to tell a patient that. I felt listened to, and like my concerns were addressed very well.

My blood counts have tanked.
WBC: 0.9 (normal 3.9-11.2)
ANC: 0.52 (normal 1.9-7.8)
HGB: 8.3 (normal 11.3-15.1)
PLT: 13K (normal 165K-366K)
But this is expected, as I just finished a round of chemo. (Hooray! I finished a round of chemo!) Post-BMT the thresholds are different for transfusion, so I don't need platelets until 10K and RBC till 7.5. But my counts are close enough that I get to go in for labs TWICE more this week (Wednesday and Friday).

My blood chemistries are great (despite not being able to eat or drink much all weekend). My chimerism results from last month showed that (a month ago) my blood was 91% donor blood (CD33+) and 86% donor immune system (CD3+). I think those are "good" but not necessarily "great" levels. The remainder of that 9% donor blood is likely being produced by the persistent leukemic cells. Grrrr!

Despite being completely off the Tacrolimus (immune suppressant) for a week, I haven't yet shown any signs of graft vs. host disease (GVHD).

In bone marrow transplant circles the first 100 days is, as I'd mentioned before, a date before most of the risky immune stuff happens, and everyone looks forward to Day +100. Since I have had to go off the Tacrolimus and am back on chemo, I was wondering if my 100 days re-sets. (I seem to worry about the wrong things, but I like hitting milestones.) Katie said that the 90-100 day mark is relatively arbitrary, but is the point where most transplant patients have their first disease checkup (ie: first bone marrow biopsy, extra lab work, etc.) and when they wean off immune suppression and antifungals. I'm already off the immune suppression (unless I develop GVHD--then I'll go back on) and as long as I don't develop GVHD, I should be able to stop the fluconazole and ursodiol. (Bactrim still goes till the 6 months point.)

I asked about masks and if I can safely wear a cloth mask when biking or walking outside (the paper ones get hot when exercising) and she laughed and said, "in pre-COVID times you wouldn't have to wear a mask outside at all--just don't bike on dirt trails!" (Stupid COVID!) Guess I'll be pulling out the sewing machine again this week.

As for the leukemia part, I also got some additional clarification. In addition to the three levels of bone marrow biopsies previously mentioned, my team also sent out an additional myeloid malignancy panel. Unfortunately it showed that the p53 mutation is still there. As Katie said, since I went into my transplant with MRD, they are not terribly surprised that I came out of it with MRD, too. (Disappointed, but not surprised.) So I will continue on the Decitabine chemo until it no longer works. Overall, I tolerated my first round pretty well. The first four days were super easy (no pre-meds!), and by day 5 I was a bit more tired and had Greg drive me. This weekend I was back to having no appetite and struggling to eat or drink anything (and to keep my pills down). Today I seem to be mostly back to normal, so three days of yuck aren't too bad.

Greg got to come with for chemo for the first time in MONTHS!

In addition to the Decitabine, if my donor is willing, we will get lymphocytes from her, and I'll get them in three batches--each 2 weeks after a Decitabine cycle. This donor lymphocyte infusion (DLI) may cause some GVHD (which might require me to be back on the tacrolimus and/or steroids), but it might also beat back the remaining leukemic cells in my marrow.

I finally just came right out and asked Katie how scared I should be with all that we now know. I reminded her that I'm the kind of person who functions really well at overcoming difficult tasks when I know what I'm up against and when I have an end point in sight. She told me that, with leukemia and especially with leukemia with a p53 mutation, that's just not possible. She can't give me survival percentages or predicted lengths of time. Even though there are factors that make people more or less likely to relapse, they're not certainties and some people do amazingly well despite being presented with "unfavorable" outcome probabilities. On the other hand, some people hit all the perfect milestones and then die from something completely unforeseen. Basically she told me that we just have to take this week by week. She reminded me that I am "only" on my third AML chemo, and there are others that can be used if need be. It made me instantly think of all my breast cancer sisters with metastatic breast cancer (MBC) who cycle (or cycled) through chemo after chemo. Some of them work for years. Some for only a few months. But as my MBC sisters have all said, every month you're kept alive by one chemo is another month for researchers to find the next, better chemo. One month at a time...

I'm resigning myself to being an awesome bone marrow transplant patient, but a really crappy leukemia patient. Given my competitive nature, I guess I'm glad that I'm kicking butt in one of the two. :)

Day +57

It took me a few days to wrap my brain around things and even figure out what to say about Monday's appointment. I'm still kind of going on uncertainties, so things could definitely change in the future, but I'll try to explain where things stand now.

I'll start with the bright spot: my CMV copies fell down to undetectable this week! So I'm off the stronger antiviral and back on the "normal" antiviral (acyclovir). I might be imagining it, but I swear I feel less dizzy already. And it was dropping my blood counts, so hopefully being off it will help there, too.

Other bright spots are that the pills I need to take daily have dropped and will drop even more by the end of the week. (Tacro already; magnesium later)

But unfortunately the cytogenetics from my bone marrow biopsy did not come back "good."
Remember there are three levels of biopsy examination.
1. Gross (microscope slide) examination: mine looked clear
2. Flow cytometry (labeling cells with surface markers and examining them for makeup): mine had 0.67% cells "aberrant." That's non-specific, but not normal.
3. Cytogenetics, or examining the karyotype of a sample of cells. Of the sample of 20 bone marrow cells, eight of mine had genetic mutations. Some of these mutations had been present earlier (before I went into remission and before my transplant), and some were brand new mutations.

Here's where I'm not sure just how bad it all is. (Is this Bad with a capital B? bad with a lower case b? BAD in all caps?)

Because my aberrant cells are under 5%, I'm technically not out of remission, but I have MRD (minimal residual disease). But obviously we don't want any abnormal cells. And the fact that I had a very harsh, myeloablative (ie: kill everything in the marrow) chemo regimen before my transplant and I already (still?) have leukemic cells is not good.

I'd been told that a little graft vs. host disease (GVHD) would be likely, and actually a good thing because if my donor's marrow is attacking my body in some way, it's likely also seeking out any hiding leukemic cells and destroying them. I haven't had any GVHD symptoms, so the first thing my doctor did was wean me off the tacrolimus (and if I'm not taking tacro, I don't need the mag supplementation--that's 19 fewer pills a day). The second thing he did is get me into chemo. I was going to start chemo this week anyway, but it was to be given as a maintenance dose, to prevent recurrence. Now it's a dose to attempt to bring me back to complete remission with no MRD. The third thing he is planning to try is something called a donor lymphocyte infusion (DLI). Basically, you take lymphocytes (T-cells) from the donor and give them to the patient and hope they seek out the leukemic cells and attack them.

It all took me so much by surprise on Monday that I wasn't able to ask a lot of questions. I've been doing reading as much as I can, and talking to others with AML and/or who have had transplants to see who has had similar experiences. There are definitely people who have relapsed after transplant (and even had second transplants) and they are alive years later. But I continue to have a lot of characteristics that make my leukemia have a "poor prognosis." That includes it being caused by prior cancer treatment, the presence of more than 3 mutations, some of the high risk mutations, not having obtained full remission (I was MRD) before transplant, and now the persistence (or re-emergence) of MRD after transplant.

So it's pretty scary. I'm trying not to be panicky until I can talk to my team and see what they say specifically. And I have to focus on the fact that even the grimmest statistics have exceptions. I do have some things going for me: I'm young (under age 60), I'm in good physical shape overall, we have no evidence that it has spread out of my marrow/blood, and I follow my medical team's guidelines, taking all meds correctly, etc.

I'll update when I know more, but for now, feel free to send vibes that this round of chemo works on the mutations and that my donor is willing to again donate (this time lymphocytes) to me. Oh, and I guess you can throw in a bit to bump up my blood counts again since being on chemo will knock them down again (and they haven't had a chance to recover from the valganciclovir). I'd prefer to not need more transfusions.

More chemo! Only 5 days each month for this one.

Day +50

Bone marrow transplant recipients count down to day +100, as those first 100 days post-transplant are when there is the greatest risk for critical side effects, and after which the stem cells are most likely fully engrafted and functioning as the new immune system. It's the general divider between acute graft vs. host disease and chronic GVHD, and the period of time when you're most susceptible to infections, as the new immune system is not yet fully established.

So I'm halfway there!

At Monday's appointment they didn't have my preliminary biopsy results back yet. I had to wait for the CMV levels anyway, so the PA said she'd call me on Tuesday.

My blood counts dropped a bit more (likely due to being on the antiviral--valganciclovir), but are hovering in the just-below-normal range.

WBC: 2.3
ANC: 1.6
HGB: 10.4
PLT: 117k

My potassium and magnesium were normal (yay!) but my creatinine level was elevated (could be dehydration; could be all the meds), so I got another liter of IV fluids.

Tuesday (yesterday) I waited and waited for a phone call with results and finally just before 4:00 pm I called the office. The results were kind of mixed.

My CMV levels, which had dropped to detectable but not measurable last week, actually rose to 130 copies this week. That means I can't stop the valganciclovir yet. (Although my dose was cut in half after being on it for two weeks.) I'm trying not to worry about the impact of being on this strong anti-viral that long. The PA assured me that people often cycle up and down with CMV levels through the first 100 days. My chart did say that I was at high risk for CMV issues since I was positive and my donor negative. Around 100 days, my new immune system will hopefully be strong enough to fight off any re-surfacing of the CMV. Until then, I use the valganciclovir as needed. Fingers crossed that levels will be down next week.

The bone marrow has three levels of testing done. The first is microscopic examination. My marrow looked good with no evidence of pathology. The second level is labeling and running flow cytometry on a subset of cells from the marrow. That had "some aberrant cells." I'm not sure exactly what that means (other than some messed up cells), but again the PA wasn't overly concerned. The third level is the cytogenetics, which won't be back for about two weeks.

As it turns out, whatever the cytogenetics show, it probably won't change my treatment plan. Because I have a history of p53 mutation, whether it remains in the bone marrow now or not, having a history means I'm more likely for it to recur. So I will start my first round of maintenance chemo (Decitabine) on Monday. I don't know the specifics of it, beyond the fact that I have five chemo appointments scheduled next week. I'm not sure how long the appointments are or how frequently I'll have them, or for how long past transplant they'll continue.

I was initially very discouraged, but I was actually anticipating worse, and I realized that only a few years ago, maintenance chemo probably wouldn't even have been done, and my likelihood of staying cancer-free would be much smaller. So this is just one more inconvenience to hopefully move me toward cure. I can do it!

Physically I've felt a lot better this week than I have the past few weeks. Cara drove over for Father's Day on Sunday and it was so wonderful to have my entire family together for the day! Maybe that's why I got some energy back and just generally feel better able to get through this. One day at a time.

First time all together since Xmas!

Day +44

Today was my seventh bone marrow biopsy, and it was far and away my worst.

I have previously described the biopsies as mostly uncomfortable. You lie on your stomach with your hip bones exposed. They take the marrow from the back of your hip bone, and numb the area with lidocaine. The injection of lidocaine (progressively deeper) is the most painful part as it really stings. But once it's numb, the main sensations are lots of pressure (when the clinician goes through the bone) and a strange suction like feeling down your leg (when the liquid marrow is removed with a syringe). The whole procedure takes about twenty minutes (including vitals before and after) and concludes with application of a pressure bandage and ice pack for fifteen minutes. Unlike at St. Luke's, Froedtert lets you drive yourself home after the procedure, and I've recently started driving again, so that's what I did.

For whatever reason, today my hip bone did not want to be pierced. The PA commented, "you have really hard bones--you can tell that you exercise." And I was initially flattered, but as she kept drilling, it HURT. I actually had her stop at one point so I could catch my breath. She said there was just a tiny bit further to go, so I clenched my teeth and she drilled the rest of the way. But then as she was drawing out the aspirate (liquid bone marrow), she commented that it was very slow going. And then she said that she couldn't get enough for all the tests they wanted to do (which included the cytogenetics to see if my p53 mutation was still there or not). I got panicky but she reassured me that sometimes there are places in the bone that are marrow sparse, and there might be another area a little farther away that is more marrow dense. She asked my permission to do a second drilling half a centimeter away from the first. The fear of not knowing results or having to go through this again was much worse than the fear of a second bone marrow biopsy on the same day, so I said sure. She gave me extra lidocaine (more pain) to numb the additional area, and this time the drill went in very quickly and easily. She also commented that the marrow was "flowing like a fountain," which was another relief, except that the pain from the aspiration was unlike any other biopsy I'd had. I gasped and arched my back and actually said, "OW!" It was more than just uncomfortable.

The whole thing took almost an hour. But I was happy that the PA and the lab tech were both pleased with the samples. I rolled over onto the ice pack and the nurse asked me how I felt. I was actually feeling kind of light headed, which I assumed was because I'd laid face down for an hour, and was tense the whole time. He asked if I wanted something to drink and I realized I was terribly thirsty and also very hungry. So my nurse kindly brought me apple juice and a snack pack. As I started to eat, I realized that my lips were numb and it was hard to swallow and I got really scared. I'd been feeling a little light headed when I got up from sitting since I'd gotten out of the hospital, and I was terrified of what this meant. I also remembered that I had driven myself to the hospital. There was no way I could drive in this condition. I was trying to text Greg and my fingers wouldn't hit the correct keys on my phone (thank goodness for autocorrect). It was then that my nurse said that it could be the lidocaine.

I had no idea that lidocaine could go systemic. I thought it was very localized, and I'd never felt anything before after a bone marrow biopsy, so that was all new to me. But I definitely felt like I was anesthetized! My nurse said I could stay as long as I needed and that the lidocaine should wear off within about two hours. It got worse before it got better. I remember being terribly sleepy, but afraid to fall asleep in case something worse happened. All my vitals were great--it was just this insane fogginess and fuzziness surrounding me. I couldn't use my phone very well. I had brought knitting with me, but it was too much effort to follow a pattern.

And then at about 1:10 (the lidocaine had gone in at about 11:20) I felt like I could sit on the edge of the bed, so I did. The next time my nurse came to check on me, I asked him if I could try to stand up. He asked if I wanted to try to walk and I walked around the unit without any unsteadiness. He said I was fine to go whenever I felt like it, or I could stay a little longer. I stayed another fifteen minutes to make sure it was truly over, and then I walked to my car and drove home.

I will get the preliminary results (ie: how well the donor bone marrow has engrafted) on Monday, but the cytogenetics (the really important stuff) won't be back for up to two weeks.

Other than today's excitement, I haven't been doing too much. My energy level fluctuates, but is still pretty low. I have tried to walk at least a little bit every day, and have biked every few days, although my rides are so much shorter and slower. I signed up to do a virtual race, Race Across Wisconsin Cheesehead Challenge. I have until the end of September to record 408 miles walking, running, biking, paddling, roller blading... When I signed up, I didn't think it would be a big deal, but now it seems more of a stretch! At any rate, it keeps me moving even on the days I feel like I'd rather just sit on my butt. Greg and Travis have both been great sports about walking and biking with me, and some days I've even been able to bike with friends (socially distanced, of course).

Which friend is the angel and which one the devil on my shoulders? :)

My labs have been decent. My blood counts dipped a little today, but that was after increasing a bit. They're all near "normal" but slightly below it. My potassium dropped into the normal range and my magnesium increased to the normal range. My CMV levels were back to detectable but not measurable (yay!). And my tacrolimus was high enough that I was able to drop from taking 10 tacro pills a day to only taking 8 a day. (It's the little things.)

Thank you all for your sweet messages and good vibes today. I'm more than willing to endure some pain and wooziness if I get good results. Fingers crossed!

Day +41

Sorry it's taken so long to complete this long post. I fear it will be anticlimactic, as there's still not much to share.

To recap, when I went to the hospital last Saturday with a fever and exhaustion, it was assumed I had a bacterial infection of some sort. So they did a bunch of work-ups and started me on IV antibiotic. Usually antibiotics start to work in about 24 hours. And my fevers didn't go down. It's now been long enough that we know that none of the two sets of blood cultures grew anything during the five days of incubation.

The bone marrow transplant doctor on Sunday made a comment that they saw that my CMV test the previous week had shown detectable, but not measurable copies of CMV. So he ordered another CMV test.

And that sent me into a dark place. CMV is cytomegalovirus, which is one of several herpesviruses. Like the ones that are more common (causing cold sores, mono, or genital herpes), once you have been infected, the virus stays in your body, but can be reactivated periodically. About half of adults have been exposed (and therefore are positive for) CMV. And it's a very minor disease that almost never causes issues, or even symptoms. The three exceptions are in newborns (transferred from pregnant mothers), HIV patients, and post-transplant patients. We knew that I was positive for CMV (thus my weekly lab work to follow levels), and there was certainly a risk of it reactivating when my immune system was knocked down. As of Sunday, we didn't know if that was it or not, and I spent too much time internet searching what it meant to get CMV after a bone marrow transplant. Fast forward to today (over a week later) and after meetings with the infectious disease doctor (who had me tested for a slew of other viruses, too, including getting another COVID-like nasal swab), the new BMT doctor on rounds, and today Dr. Hamadani, I'm a bit more calm.

Essentially back in the 1980's, the only way to test for CMV was a culture that took three weeks for results (now the rapid test gives results in under 24 hours). In that time, CMV could infect organs (often the lungs or brain) and was often fatal. However, by tracking the levels weekly, it's possible to catch when the viral levels first start increasing and there's an anti-viral to reverse it. While I was still in the hospital, they started me on an IV anti-viral called ganciclovir. When I left the hospital, it was switched to the oral version, valganciclovir. And that's what I'm on now, because my second test was higher than the week before. The plan is for me to be on this stronger antiviral for about 2 weeks. They'll check my levels next week and if they're again non-detectable, I'll stop the valganciclovir and go back to acyclovir. If it's lower, but not completely gone, I'll still decrease the dose.

None of the other viral tests came back positive, and because a low level of CMV usually doesn't have symptoms, we're really not sure what (if anything) caused my fever. As the infectious disease doctor said, it's possible my fever would have just gone away on its own in a few days. But as anyone with a cancer diagnosis knows, once you've had cancer, nothing is ever "nothing" again. So it's good that I went into the hospital. If nothing else, the copious IV fluids helped.

Although I initially felt a lot better after getting fluids, that didn't last the entire time I was in the hospital, and the exhaustion overcame me again. I tried to do some walking, but was hooked up to the IV pole almost my entire stay, and so I spent most of the last week "in bed." I feel like it. I'm home, and so happy to be home, but I feel like I have no strength and no stamina. I'm trying to gradually build back up, but I'm also very impatient.

Other things I learned at my appointment today include the fact that, while my blood counts were dropping in the hospital, they're starting to trend upwards now. Today I actually had the highest platelet level I remember EVER having: 152k. I am scheduled to have my next bone marrow biopsy on Thursday. This will be a big one--not only are they looking for evidence that my donor marrow is well established, they're going to do cytogenetics and hopefully my last remaining mutation (from before the transplant) is gone. If it is not, I'll be back on maintenance chemo, so if you want to send good vibes, send them for no mutations in my bone marrow!

Day +36

I have a very long blog post forming, and a lot of information (and lack of information) to share, but unfortunately I'm just too tired to put it all together right now.

Suffice to say that I am home, I am physically feeling better, and I am emotionally feeling LOTS better.

And I'm tired. So very, very tired.

Thank you to everyone who checked in on me during my five days at Froedtert. I just didn't have the energy to respond--especially since I didn't know much most of the time. But I so appreciated your messages.  XOXOXO

Day +32

I hadn't posted since making it home two weeks ago because not much was happening. I'd been healing, albeit slowly. My counts dropped the week I went home (since the neupogen shot had falsely increased them) and I needed another neupogen shot, but since that time they've all been at or near normal levels.

After a few days home, when my platelets were solidly above 50K, I was cleared to bike. I started slow (5 miles) but built up and on Wednesday Travis and I rode almost 12 miles! It felt great and I was sure that I'd turned the corner and my energy and stamina was coming back.

Me & Trav at the Oak Leaf Trail closure on the Zip Line

Thursday was day +30 and the day I started Bactrim, which is an antibiotic to prevent a potential pneumonia that can occur post-transplant. I was a bit worried about adding yet another med to my routine because antibiotics tend to mess with my stomach. I took the first dose at 7:30 am and by 9:30, when it was time to leave for my lab appointment (which I was cleared to drive myself to), I felt icky enough that I asked Greg to drive me.

Both Thursday and Friday I just felt yucky, for lack of a more technical term. My stomach was definitely upset and I had no appetite. But more than that, I was exhausted beyond belief. I kept falling asleep in the recliner. I could barely walk up stairs and finally on Friday I stumbled out into the yard to look at my garden, but even that "trip" was exhausting. I'd gotten the chills and taken my temperature Thursday night and it was 99.8. That's feverish, but not enough to warrant a call to the doctor (that's reserved for over 100.4). I slept restlessly, and stayed away from the thermometer overnight because if I don't KNOW what my temp is, I don't have to do anything about it, right?

Friday morning my temp was back to 99.0. Again, just general yuckiness. Friday about 5:00 I got the chills again and when I took my temp, it was 100.2. By 7:15 it was either 100.4 or 100.9, depending on which thermometer I used. So I called.

Because I was not having any urgent symptoms of infection, I was given the option of going into the 24 hour clinic Friday night or at 8:00 am Saturday morning, as long as I watched my temp and it didn't go much higher. I chose Saturday morning.

So today I had the full infection workup: blood cultures x 6; regular labs, urinalysis and culture, chest x-ray, etc. The PA on call said that none of the quick results indicated an infection (the cultures take 24 hours +), but it still might be a low grade infection, so they wanted to put me on antibiotics. She said it could be given orally (ugh--another oral med) or via IV (which would mean hospital admission). She called Dr. Hamadani, and he said that he wanted me admitted.

So here I am. I was initially sad that I wasn't sent back to 9CFAC (I'm now on 7CFAC) so I could see the nurses and CNAs from my transplant stay, but it's actually kind of nice to be somewhere different. I was feeling some trauma at the thought of going back to where I'd spent those 25 lonely days, and even though I know this shouldn't be as long, I was sure I'd have a tough time with it. So I have a different view out my window, a slightly different (but just as large) hospital room, and as of June 3, patients on the oncology floors are allowed one visitor during their entire stay. Greg was able to come spend time with me this afternoon. However, while he was here, he asked the NP why they hadn't done a COVID-19 test on me, which prompted--you guessed it--me getting a COVID-19 test. I'm beginning to re-think choosing him as my one visitor!

Protocol says that I need to stay in the hospital until I no longer have a fever plus 24 hours, although apparently the doctor on rounds this week is "very conservative" and may make me stay until I'm 24 hours fever-free without the antibiotic. Either way, it should only be a matter of days for this stay.

One of the things that my labs showed was that I was dehydrated. So they gave me a liter of IV fluids, and I started to feel somewhat better after that. Then I got my first dose of IV antibiotic (with more fluids) this afternoon, took a nap, and feel LOTS better. I'm certainly not 100%, but I feel so much better than I have for several days. As much as I did not want to be here, it seems to be exactly where I needed to be.