The steroids are kicking in!

 I'll try to fill in what my past two days have been like.

I slept amazingly well my second night here (Thursday night). I still had the usual hospital interruptions but was awake just long enough to be cooperative and then fell right back asleep. I think I was in bed with the lights out for between 9-10 hours.

Yesterday morning I started the day needing platelets (down to 8K) and blood (HGB at 6.3), but was thrilled to hear that my peripheral blasts had fallen to 63% (they'd been as high as 81%), so doubling the hydroxyurea seemed to help).

I started the chemo portion of the clinical trial yesterday afternoon. About 1:30 I got pre-meds (to prevent nausea and infusion reactions; this includes the steroid that is given with some chemos--my first experience was with the AC chemo during breast cancer). About 2:00 I got the first med--the "M" in CLAG-M (mitoxantrone). This med is bright blue (see photos below). For those that knew Greg and I when we got engaged (or who have heard the story), you might be amused that Cara's response to these photos was, "did you just ask for something blue?"

About 2:30 they started the Cladribine (CL) which ran for two hours. No biggie there. I napped through part of it.

Then I had to take a two hour break. I ate dinner, played around on my phone, took a few walks in the hall.

The Cytarabine (A for Ara-C) is the real deal. It is known to cross the blood-brain barrier and cognitive issues are the first sign that there might need to be a dose decrease or to stop treatment. Cytarabine is actually the first chemo (the "7" in the 7+3 regimen) that I was given at St. Luke's in November to attempt to first achieve remission. But this is a stronger dose and not given 24 hours a day, so more intense. I started protective prednisolone eye drops and take them twice a day to hopefully prevent vision problems. And every night before giving me the Cytarabine, I do a bunch of cognitive function test. I need to write my name on a page that tracks my handwriting. I need to say the current date, approximate time and where I am. I have to do strength tests (squeezing nurse's fingers, pushing and pulling with my feet and arms, rapid back-and-forth motions with my hands, tracing a pen with my eyes, and touching a pen, then my nose, using both hands and as the pen is moved).

I haven't had any terrible side effects from this chemo yet. The "worst" is my reaction to the G (GCSF) injections. I have swollen up terribly at the sites where the injection was given. It's thought that because I lost so much weight (and the injection goes into the fat), it's going more into just skin and that's causing the swelling. We tried my butt cheek tonight (instead of my belly) so maybe that'll help.

Last night I fell asleep pretty well after my 9:00 meds. My nurse said the Cytarabine would be done about 11:30 and she'd sneak in, turn it off, do my midnight vitals and labs and let me sleep a bigger chunk. I woke up with a start at 10:30 and couldn't fall back asleep. I felt clammy but not necessarily cold or chilled. Even after the midnight vitals (no fever, despite the clamminess) and labs, I just tossed and turned, and heard all the sirens coming, and got chilled and then overheated, and let my mind race where I talked myself into every symptom being a sign that this regimen was not working and it was my last chance. My heart was pounding and when I tried to pick up my phone to play mindless games, my vision wouldn't focus and I just KNEW that meant that I'd have to stop this treatment. And then from some depths of my brain, I remembered that I'd had steroids earlier in the day. When the nurse rounded for 4:00 am vitals, I asked if my symptoms were possibly from the steroids and she said, "oh, yeah--you developed the ‘roid rage!" Just hearing that made me relax and I was able to sleep for about three hours before getting up for 8:00 am vitals.

The doctors rounded pretty early today. 

Dr. Murthy came and said that my total bilirubin levels have been increasing and they wanted to run some additional labs. The total bili level can be broken down into direct bili and indirect bili. If indirect, it's likely caused by red blood cells breaking down (chemo trashes blood cells and we'd upped the hydroxyurea). But if direct, it indicates an issue with the liver--potentially a blockage of some sort, which can indicate veno-occlusive disease (VOD)--a much bigger deal. VOD is a known risk after taking Myelotarg, and also after having a stem cell transplant. Rates of this happening are still only about 20%, and I don't have any of the other risk factors (history of alcoholism, prior hepatitis infection, prior liver radiation), but it's still a concern. They ran labs on the breakdown of direct/indirect bili. If direct is elevated, the next step would be a liver ultrasound. More waiting and more potential tests... 

Before he left, I asked if I could get a prescription for something, if needed, to allow me to sleep at night with the steroids kicking in. I asked for Ativan, since that had worked at St. Luke's. Best of all, it's as-needed, and fast-acting, so I don't have to take it unless I need it.

I was surprised when Dr. Hamadani popped his head in the room. I didn't even know that he did hospital visits! He said he was excited about this clinical trial and he'd hoped I'd gotten into it the last round when they were accepting patients. He said if I go into complete remission with no MRD, and count recovery, the plan is to just watch and wait. He said he'd preferably give me a donor lymphocyte infusion (DLI), but since my donor isn't available, that's not an option. If I get into remission, but counts don't recover, the plan would be another bone marrow transplant from a different donor. He said it takes awhile to get a Be The Match search launched, so he would start it now "just in case" and not to be surprised if paperwork came in from my insurance to approve the second transplant. I asked about the haplo donor that Dr. Murthy had mentioned and he said his preference would be another perfectly matched unrelated donor from the registry. I said something about there being other matched donors internationally when I had my transplant, but with COVID they went with the domestic donor, so I wondered if they'd opened it up to international again. He said that they had and that he preferred European donors (I think because culturally it's so much more normal there!).

The hem/onc fellow came in about 10:45  to tell me that my direct bilirubin IS elevated and that they wanted to repeat the test to see if by chance it's on its way down. If not, they'll want an ultrasound. She said it's possible that I had a gallstone briefly blocking things and it may have already passed, or maybe if they find one, they can scope it out. 

Two hours later she came back to tell me that the latest test showed that my bili numbers went down. They don't see the need for an ultrasound yet, but they'll keep watching my numbers and if they tick up again, I'll get that ultrasound! (C'mon bilirubin!)

And then I started round two of CLAG-M. That's where I am now--with about three hours left in the A part.

I'd mentioned that I was struggling drinking enough as water didn't taste great and that very few of the beverages on the hospital menu that were appealing. My nurse asked if I wanted a little fridge in my room to bring stuff from home. Heck, yeah! So here's my fridge.

I then got greedy and asked if I could bring a little microwave in (a friend offered one). But I can't have "heat-producing items" in the room (so I assume that means no crockpots or electric kettles or hot plates, either). But I now have good Gatorade flavors and string cheese in my room!

And I was able to take pictures out of my window for those who asked how to visit and wave to me. I'm not sure if you can see anything in my window from the road, but if you text me and I'm in my room, I can stand in the window and others have been able to see me. :) I'm on the fifth floor. I'm on the south side of Froedtert (where the ponds are) off of Doyne Ave.

Thank you all for your continued well-wishes. I'm going to ride the steroid high (energy and increased food intake!) for at least a few days. I'm sure I'll do quite a crash by mid-week next week, just in time for the experimental part of the treatment on Friday. Love to you all!

First full day

 I barely slept last night and had a tough time napping today, so I'm exhausted and will go to sleep as soon as they bring my night time meds. So this post is more of bullet point list than a blog post. :)

6:30 am: I was woken up to head down for my echocardiogram. Luckily since they already had a baseline from April, it only took 15 minutes (not 45) this time.

7:30: Back to the room for vitals, ordering breakfast, discussion of meds, including whether I can take Claritin (and stop the Zyrtec) to help with bone pain from the G-CSF (Neupogen) injections. I can.

9:30: PT came in to do her initial evaluation, show me the floor and set goals.

10:30: Dr. Abedin and his team did rounds to have me sign the paperwork for the clinical trial. Still waiting on screening results before it's official. He discussed lots of things about the clinical trial, but the main things included

• The CLAG-M is the main part of this therapy. It is a salvage chemo, which is used when people either fall out of remission or have refractory leukemia (have never truly gone into remission, which might actually better describe me) and it alone has about a 50% success rate. This trial is adding the lintuzimab to attempt to get any cells that make it through the CLAG-M, thus hopefully increasing the success rate.
• He explained how Myelotarg is a monoclonal antibody that works by connecting to a CD33-expressing cell, injecting calcheamicin (essentially a DNA interruptor), which must make its way into the cell's DNA and reprogram it to commit suicide (apoptosis). However the lintuzimab (actually lintuzimab-Ac223) is also an antibody, but it is connected to the radioactive isotope of Actinium and once it attaches, it destroys the cell in fewer steps.
• I am the first receiving this higher dose of lintuzimab  and so they would not be surprised if I take even longer for my blood cell counts to recover, or if they don't recover at all.
• He defined "too long" as no recover after 40 days. Up to this point most people achieved count recovery in about four weeks.
• I should expect fevers of unknown origin in week two.
• If my counts are starting to recover, but not fully recovered, I might be able to go home before full recovery and complete my treatment outpatient.
• Dr. Abedin asked if Dr. Atallah and Dr. Hamadani told me what would happen if my counts didn't recover. I said that they'd just said they "had things to do." Dr. Abedin explained that no recovery of counts means that I have no remaining donor bone marrow and so they'd need to get healthy bone marrow working. I told him that my donor was not available anymore and he said that if I didn't have any of her bone marrow left, I'd be able to accept another, different bone marrow. That could be another matched unrelated donor, or it could be a haplo-donor (sibling, parent or child).
• Other very real risks from this procedure include kidney damage, as the lintuzimab is eliminated through the kidneys and can do damage on the way out. I've already started taking protective meds, and as I'd said earlier, on lintuzimab day (10/2), they will pump me full of IV fluids, make me drink like crazy, infuse me, and continue pumping me full of IV fluids after.
• The last thing Dr. Abedin said is that for the study they'd be drawing an additional tube of blood to test for single nucleotide polymorphisms (SNPs) in the CD33 gene which might explain why meds like the lintuzimab-AC223 or Myelotarg, which target CD33, aren't effective in some people.

After lunch, I took a nap and then OT paid me a visit. She gave me some exercises and did some baseline screenings on cognition. I was able to take the Montreal Cognitive Assessment (that test that President Trump bragged about acing—person, woman, man, camera, TV). I was horrified that I didn't score perfectly (at the end of the test I could only remember four of my own list of five words). But I passed and the other motor skills tests went better. :)

I got an in-room EKG.

4:30: My nurse came in to give me three meds--one to protect my kidneys, steroidal eye drops, and a neupogen shot. I asked if that meant I was in the trial and she said yes--Dr. Abedin had just received all my screening tests and signed off.

And now it is 10:00 pm and I have to crash. Forgive me for any typos. I'll try to fix them tomorrow.

I will finish with the address to send me cards (NOT needed, but lots have asked):

My name

Room 5

7CFAC

9200 W. Wisconsin Ave.

Milwaukee, WI 53226

Thank you, dear friends, and goodnight!

Day +111

Well, it's not GOOD news, but it's not the worst news, and (as usual) once I have a plan, no matter how tentative, I feel better emotionally. 

Blood counts:

WBC: 0.3 (remains so low); HGB 7.3 (dropping); PLT: 56K (woot!)

We knew the news wasn't good by the look on Dr. Atallah's face when he came into the room. Greg immediately pulled his chair closer to me. I think both of us were thinking, "plan for hospice." Luckily we're not there yet.

However, as I had expected, this regimen of chemo is not working on my leukemia. In June, I relapsed with 0.6% blasts in my marrow. Last month they were up to 5.6%, and this month I jumped to 17.1%. Definitely not working.

So the BEST case scenario is a possible clinical trial. I'd mentioned it twice before. It was in early stages back in April when I first fell out of remission pre-transplant. At that point, the trial was Phase One, lower dose. Then, when I fell out of remission post-transplant, it was mentioned to me, but was not currently enrolling. Now the trial is in the ramp-up phase, going from 0.75 ug to 1.0 ug. They FDA has apparently given oral approval, but not yet written approval, which could take a few weeks. Dr. Atallah said that they have seen "very promising results" at the lower dose. He also said that a wait of two weeks might be emotionally concerning, but is not medically concerning.

As a reminder, the clinical trial combines CLAG-M (which is the standard of care for me at this stage) with lintuzimab. CLAG-M is cladribine, cytarabine and filgrastim with mitoxantrone. Lintuzimab is an anti-CD33 antibody with a radioactive portion attached. Some AML cells express CD33, and the lintuzimab seeks them out and destroys them (cool, right?). Last go-around we didn't know if my leukemic cells expressed CD33, but today Dr. Atallah said that they express CD33 "very strongly." This is definitely good. This treatment needs to be done in-patient. If you click on the link above, you'll get specifics, but the treatment itself is 5 days, but then a total of 3-4 weeks (or more) in the hospital because it REALLY knocks down blood counts and a patient is extremely transfusion-dependent and neutropenic, much like my initial 7+3 regimen back in November.

Right now that is my utmost hope: getting into the CLAG-M + lintuzimab clinical trial. I welcome any positive thoughts that way.

Unfortunately I have two other issues that I'm dealing with, which could possibly prohibit me from qualifying for the trial.

Last week I noticed what I initially thought were bug bites on my calves. I've gotten more, but they are strange. They appear bright red, but the center of them is a different texture. And after a few days, the top layer of skin just peels off and leaves me with a slightly-darker skin tone in the shape of the spot. Dr. Atallah is sending me for a skin biopsy. It could be leukemia cutis, which would only tell us that I have leukemia, and we already know that! It could also be a form of graft vs. host disease. Leukemia cutis wouldn't disqualify me from the trial--I'm not sure if treatment for GVHD would or not.

The scarier symptom is that I've been getting shocks down my legs for the last week or so. At first it only happened when I was biking or walking but now it sometimes does it when I'm sitting. This could be a sign that the leukemia has travelled to my spinal fluid. Dr. Atallah quickly reassured me that there were treatments if that were the case, but before I could even ask, he said that it might disqualify me from the clinical trial.

So tomorrow at 7:00 am I have labs, followed by a blood transfusion, and then at 11:00 a lumbar puncture to check for the presence of leukemia in my spinal fluid. I'm not sure how long it'll take to get those results, but I'll let everyone know when I know.

If, for whatever reason, I'm not eligible for the clinical trial, there are still options. Essentially, I'd drop down to "just" CLAG-M. This would still be in-patient for 3-4 weeks.

So there's a lot to unpack. There's a lot of very scary stuff. But I guess my prime take-aways are thus:

1. I appreciate positive thoughts for a clean (negative) lumbar puncture tomorrow

2. I appreciate finger crossings and hopes that I am able to get into the clinical trial 

3. I am thankful that I will get at least a little time at home, without any chemo, in hopes that my blood counts can recover before the next onslaught

As an add-on, I really need to figure out a way to put on weight and get stronger again. This month of chemo and leukemia ickies have made me extremely weak. That's no way to fight this beast or make it through another rough chemo regimen. Feel free to remind me (via text or messenger) to eat something or do some squats or wall pushups!

Thank you. Love you all, and know that I appreciate all the positive vibes you'll be sending my way for this next bout. XOXOXO

Day +87

Patience is a virtue. Repeat weekly, daily, maybe hourly.

And I had a long blog post mostly-completed about this and was waiting till today to post. Unfortunately my computer ate it. So you will get a shorter, less-entertaining post instead.

First of all, this week I spent a LOT of time at Froedtert. I had five days of chemo (M-F), two days of labs and two doctor appointments.

Chemo (Dectabine) is very similar to the first round. That is, three days easy-peasy, followed by feeling tired on day 4 and more icky on day 5 (today). Unfortunately the last three nights I've only gotten somewhere between 4 and 5 hours of sleep. I think, if I remember correctly, that the same thing happened last round. I'll keep better notes for (hopefully) round three. I'm not exhausted--I actually can't sleep because I'm not tired. It's odd. Must be something chemo-related.

Labs have improved ever-so-slightly. Actually, my WBC and neutrophils have creeped down, but they've been essentially zero for a long time anyway. After my last blood transfusion (last Friday), my HGB has maintained, and surprisingly my platelets have increased to 50K! No one seems to know why that's happening, but it's not a bad thing. My peripheral blast counts are bouncing between 5% and 11%.

Monday I had an appointment with Dr. Hamadani and he told me that although he would stay in contact and see me periodically (and manage any GVHD or other transplant-related issues), he was shifting my care back to Dr. Atallah. I also asked about the possibility of a second transplant, and he said that we could only discuss that if (IF) I made it into remission with negative MRD. I think that means that there's not much of a chance that I will end up with negative MRD. But every month may present another option, so I'm not giving up.

Tuesday I met with Dr. Atallah. It was nice to see Dr. Atallah again, even though it meant that I was seeing him because the leukemia is back. He explained more about the clinical trials. Basically, enrollment in clinical trials changes daily, so I can't enroll now anyway. That's because we don't know yet if the Decitabine + Venclexta is working or not. My first chemo cycle was only Decitabine (before the bone marrow biopsy). So the plan is for him to watch my blood blast % and as long as it doesn't get too high, I will be on Venclexta for a full cycle before the next bone marrow biopsy. If that biopsy shows good results, I'll stay on Decitabine + Venclexta until it doesn't work anymore. Then, and only then, we'll look for a clinical trial that might work.

So that's my plan, as it is. Wait and see. And no decisions can really be made until they can be made.  :)

I've been trying to stay active, but it's been a lot harder with the heat. I signed up for a few exercise challenges, but one that I was most excited about was the Trek Century Challenge. You could compete at three levels--100, 500 or 1000 miles in the month of July. Last year I rode 322.5 miles in July. I'd planned (last year) to stretch myself and do 500 in 2020. Well, that definitely didn't happen!  However I did manage to eke out 100. Given the fact that I had 8 days of chemo and received 7 units of blood and platelets in July, I guess that's really not too bad.

Finally, I have to share the coolest gift that my friend Laura gave me (along with a quick, masked, socially-distant visit):

a Prince mask--perfect on day +87 (cuz CLASS OF '87 RULES!)

Thank you all for your continued positive thoughts, prayers, messages, and wishes. One day at a time...

Day +79

Nothing earth shatteringly new.

My counts continue to be low (dropping or maintaining), although I have not needed transfusions every two days like last week. Friday I needed both blood and platelets; Sunday I needed nothing; Tuesday I could have gotten blood (HGB: 7.4) but chose not to. Today (Thursday) I was pleasantly surprised that most of my counts are creeping up ever so slowly (HGB: 7.6, WBC 0.4, PLT 19K) even after 6 days without transfusions. The blasts in my blood, however, are up to 8%.

In addition to the continued low counts, and increasing blasts, I also got the info from Friday's bone marrow biopsy. Not surprisingly, it showed 40% cellularity (you want none) and 5% blasts (you also want none, but under 5% can still be normal). The leukemia is most definitely back.

The current plan is for me to continue on Venetoclax (oral chemo, started four days before the biopsy) and to get my next round of Decitabine next week (infusion chemo M-F every day). Because I hadn't been on the Venetoclax a full cycle, they aren't ready to move on from this regimen, but at the same time they're not yet convinced that it's working. Dr. Hamadani (who was *amazing* this appointment, FTR) said they have three clinical trials in mind. His third choice he glossed over and didn't even tell me the exact med. His second choice is an antibody aimed at CD47, and his first choice is a combination of chemo and a radiotherapy-adapted immunotherapy (lintuzimab). I think that this is the trial he's talking about, as he said they're expanding it and need to make sure I'm CD33+ to qualify. They will watch my counts and if they seem to be rebounding and the blasts aren't increasing, they'll stick with Decitabine and Venetoclax, but they are also checking my eligibility for the clinical trials.

Although I felt truly awful last week with my low counts, I have not felt as bad this week (at least not physically--mentally I'm all over the place).

I continue to feel very lucky that I have not (yet) had signs of GVHD or other issues that would be truly awful on top of the leukemia crap. Nothing much to do other than keep plowing forward. Also, I feel like I gave the leukemia a chance to save face and leave gracefully. He's got a few more weeks, but so far he doesn't seem to have accepted what a generous offer I've made. After all, if he really wins this fight, he dies with me. But if he takes credit for being ultimately badass, I will tell his story for as long as I live. (Can you tell we finally watched Hamilton this week?) If he's really thinking about his legacy, I think he should just give it up.

Fingers crossed for counts continuing to rebound at Saturday's labs, and either remission from this, or acceptance into this promising clinical trial.

Day +70

I was hoping I'd have some amazing news of some sort by this week, but it's more of the same for the most part--maybe even a little worse.

My counts have continued to drop even though I'm over a week after completing my first round of chemo (two weeks since starting it). WBC are low enough that I'm on all the extra protective meds, hemoglobin is low enough that I needed a blood transfusion Friday (and I *feel* like I'm low on oxygen), and I've needed THREE platelet transfusions. It's not just the chemo, as the percentage of blasts in my blood have also increased (1%-8%). So this is the return of the leukemia and we need to try to knock it back into remission.

I'd mentioned the possible donor lymphocyte infusion (DLI) before, which would be a three-time "boost" of some immune cells from my donor. The hope (and what often works) is that her immune system would recognize the leukemia as foreign and would attack it. Yesterday I learned that my donor is not available to donate additional cells. They don't know why (Be The Match doesn't give a reason), but at any rate, the DLI is no longer on the table.

I will get another bone marrow biopsy on Friday to see if the first round of Decitabine did anything. I have also, since yesterday, resumed taking the oral chemo (Venetoclax). I'll do at least a cycle (month) of Venetoclax and they'll watch for a response to the chemo (counts rebounding, blasts dropping, etc.). If not, they'll do another biopsy in another month and go from there.

If there is more leukemia even after those cycles of Decitabine and Venetoclax, then we move onto something else. There is a promising clinical trial that uses an antibody against CD47 (which indirectly targets p53), which they are hoping I could get into.

To end on a slightly more positive note, I mentioned my concern yesterday that I had to have platelets three times, two days apart, each time because my count was 9K (really low). Katie said she'd draw a post-infusion lab to make sure that I wasn't developing refractory platelet issues. Basically that would be an immune response to donated platelets. Yesterday my count went up to 52K after my transfusion, so she doesn't (at this time) suspect refractory platelets. (If it were, I'd need to receive platelets much more closely matched to my blood type and HLA to decrease the chance of a reaction.)

And I know most of you saw my post on Facebook, but I will keep posting about blood (and platelet) donation whenever I hear of there being a shortage. Since I started my treatment for leukemia, I have needed 10 units of blood and 16 units of platelets. :(  I don't know when this need will go away (if ever). And I am so indebted to those of you who donate regularly, who started donating since my diagnosis, or who went from sporadic donations to regular donations. You are heroes! And I mean that completely. I literally would not be alive without you (and others like you) donating. If you donate through Versiti Blood Centers, your donation stays local. They have donation sites all over the Midwest. You can sign up online, and I've heard from many people that they are doing an awesome job of being safe in times of COVID. But if you prefer Red Cross, they're also good, and I'm sure there are local centers in other parts of the country/world. I feel like blood donation is a big karmic pool and wherever you give, it results in someone somewhere that you love benefitting, as your donation is benefitting someone somewhere that someone else loves. :)

Life-giving red blood cells

Me, with my third bag of platelets this week

Finally, I've decided to approach my leukemia mentally in a slightly different way. I was already thinking this when Cara responded to the return of my leukemia by texting me, "You are clearly a vicious badass--all of your cells, even the f'ed up ones!" So I acknowledge the badassery of my leukemic cells. They have made it through four different chemo regimens (including one called "myeloablative" which literally means obliterate all the marrow). They keep mutating and making it harder and harder to fight them. I am a strong, otherwise healthy, relatively young woman and they keep winning. So I give them kudos for being this strong. They've proven themselves and I will no longer underestimate them. And now it's time for them to take their first place medal and get the fuck out.

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 +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 +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.

Day +19

I won’t keep blogging every day—just somewhat important days. But I figured many were curious about my counts and if I made the right choice in going home yesterday.


I’m not sure what did it—my new marrow taking hold, the Neupogen shot, my biking friends screaming into the tunnel, all the visualizations and prayers being sent my way... But something  is definitely working!

WBC: 6.0 (from 0.8; normal is 3.9-11.2)

ANC: 5.34 (from 0.46; normal is 1.9-7.8)

HGB: 10.3 (from 7.8; normal is 11.3-15.1)

PLT: 28k (from 21k; still way below normal)

When the nurse called Dr. Pasquini, she said he was thrilled!

I now get to drop the prophylactic antibiotic and therefore can add more oral magnesium (They interfere with each other’s absorption). Hopefully that will eliminate (or at least minimize) the number of mag infusions I’d need.

Now I just need those platelets to kick in so I can get back on my bike!

Day +18 Home Sweet Home

Today didn't start out like I'd hoped. Or actually it kind of did, but by 5:00 am it had changed.

When I get labs drawn, the WBC, PLT and HGB result within half an hour, but the ANC are hand-counted, so take longer. So what I learned is that my WBC, PLT and HGB all went up! I was given blood because outpatient thresholds for transfusions are higher (since you're not going to have labs drawn every day). I also needed magnesium again. But it seemed everything was good to go. And then the ANC results came in. Remember that discharge meant I had to have over 0.50 for two days in a row. I'd been increasing each day and yesterday was 0.55. Today was 0.46.

No one could tell me what that meant, all deferring to Dr. Pasquini, but everyone said that I might have to prepare for another night in the hospital.

Finally at 9:30 Dr. Pasquini came to see me and gave me two possibilities: Stay in the hospital one more day to ensure this was just a blip and that my counts rebound and get discharged tomorrow, or get a neupogen shot (to boost blood cell production), go home, come back tomorrow morning for labs and possible transfusions and infusions, and potential re-admission.

I won't say much about how crushed I was or how hard it was to decide, but in the end, I decided that even if I was only home for a day, my brain needed to get out of the hospital room.

So I got the neupogen (which will cause some bone pain), got some extra meds (since I'm technically neutropenic again I need more protective meds), and busted out of the hospital.

You guys--do you know how much things have changed in the 25 days I was in the hospital? There were just the smallest beginnings of buds on the trees and now everything is green and blooming! It was mind-blowing to see the difference on the drive home.

I cannot thank you all enough for all of your support and encouragement while I was hospitalized. The cards and gifts and artwork and text messages and Facebook comments and Zoom sessions and photos in #ride4lori and purple t-shirts... Although I wasn't able to see anyone close to me that whole time, I didn't feel disconnected because I was physically and emotionally surrounded by all of you. I wish I could explain how much it helped.

I would be naive to think that this is all over, because there's a lot of healing ahead of me, and a lot of scary possibilities still. But this was one huge hurdle and I'm over it.

There is nothing sweeter than fresh air--even through a surgical mask

Day +14

I started the day getting blood, as my hemoglobin was 6.1 (maybe that's why I slept all day yesterday?). My white blood cells stayed at 0.3, and my neutrophils inched up a bit to 0.24. My mouth and throat still hurt, but I think they're a little better. Instead of feeling like I'm swallowing razors, it mostly feels like a pretty normal sore throat. Talking still hurts a lot, and I sound like a lifelong smoker when I do talk. I took a few bites of "solid foods" but most of my nutrition is still liquid.

Today was Dr. Chhabra's last day on rounds and I didn't get to see him yesterday after my counts went up. He was excited that I've turned the corner and said my mouth and throat should feel better very soon. He explained/reminded me that the neutrophils job is to seek out inflammation and repair it, so the first neutrophils made by my new marrow went right to work, repairing my mucositis. It's only after they do that work that we see some also in the blood. So even though my levels are pretty low in the blood, it's obvious that they're being made and working correctly. Then I asked him at what neutrophil level I would be allowed to go home and he said usually about 0.5. He said that if all goes well, he could imagine me being released on Friday. My jaw dropped.

I still have a lot of work to do--mainly around getting myself weaned off the IV for meds and being able to take all of them orally. I also have to be able to eat and drink and maintain adequate nutrition. I have to be able to manage pain and stay awake more than a few hours at a time. I have to keep from spiking a fever or worsening in any way. But it gives me hope.

My meal trays come with various little notes of encouragement from the
chaplaincy. I got this same card both on my breakfast and lunch trays today...

Today was day four, which meant a caps change and a few hours without the IV tether (I already am weaned off supplemental fluids through IV since I can drink some). I showered and walked. I am determined to build up some strength that I've lost over the last few days so that I can get home and do more than flop around.

On my walks around the floor I witnessed a few things. First I saw several family members outside of a patient's room. (Visitors are only allowed in for end-of-life; discussion supported that.) Secondly, I overheard nurses talking about the hospital beds filled with ED admissions after opening things up in the State. Third, one of the other patients doing laps at the same time was wearing a Reagan-Bush 84 t-shirt. I really have to get out of here!

Day +13, full day

7:00 am post:

My labs show that my white blood cells jumped from 0.1 to 0.3 last night and for the first time in almost a week I have (a few) neutrophils!

Engraftment seems to be working. :)


7:00 pm post:

All of my labs were good (relatively speaking) this morning--no transfusions needed! A bonus of being on IV fluids around the clock is that they can give me IV fluids with magnesium in them so I don't need a separate magnesium IV.

My mouth is feeling lots better, and my throat is less swollen, although the pain and tenderness stretches farther down, so swallowing is still difficult. I was able to eat a few bites of solid food both at lunch (mashed potatoes and gravy) and dinner (chicken and wild rice soup), so I call that a win! I'm hopeful that my neutrophils will keep coming and I'll be even more healed overnight.

I checked another box off today--I'm no longer marked hazardous!  :) I've had to wear a bright green bracelet indicating that I have chemo in my blood since the first day I was here, and there's a marker on my door indicating the same. As of 6 pm tonight, that's out of my system! :)

I've had a list of four tasks to do daily since I came to the hospital: walk, do oral care at least 4x/day, shower, use CHG (antibacterial) wipes. Almost every day I have done all four, but this weekend was a struggle and on Saturday I only did two of them. Today I did all four again (although I only managed four laps).

My wonderful friend Linda, in between working full-time as a nurse, converted some of my old t-shirts into snap-sided shirts that I can wear while hooked up to the IV. It's amazing how much better I feel in a real shirt!

I'm not completely healed, and am still getting the majority of my meds through the IV, not eating enough, and sleeping way too much, but I have turned the corner. It's a really good feeling!

Day +12

I'll start with the good news:

No blood products or magnesium supplements needed this morning. I slept pretty much all night, only briefly waking up for labs, meds, vitals. Although my temperature has slowly crept up, I have not (yet) been over 100.4, so no invasive workups for infection yet.

That's about it.

My mouth is even more covered with white patches/sores than it was, and it continues to reach further down my throat. Even swallowing saliva hurts so they have given me a personal suction device kind of like at the dentist. Due to the sores in my mouth I produce a lot of thick mucusy saliva which burns if I swallow it.

I woke up hungry and ordered eggs, but putting any solid food in my mouth was excruciating, so I quickly stopped that. I was able to force down most of a protein shake for breakfast, though it hurt.

After talking to my nurses, the PA and Dr. Chhabra, I've decided to try to let my body rest as best as it can. That means that all of the oral meds that can be taken via IV will be switched to IV, I'll switch to IV pain control (not excited about the narcotics), and I am able to take a break from eating. Dr. Chhabra said even a few days of not eating is fine--if it gets longer than a few days, they'll consider IV nutrition.

All sorts of things that I wanted to avoid are in my present and future. It makes me very sad, but the staff assures me that most people hit this phase, especially with the particular myeloablative regimen that I had.

It's tough, but I can do this. It's much harder to be doing it without a defined end date, but that's how this goes. I've been told that I will "know" that my neutrophils are coming up even before my test results show it, because my throat will hurt less. That sounds good to me. One day closer.

It was a yucky rainy day and when Greg swapped clothes today,
I could only see him waving from the car.

Day +10

Last night was rough.

I now have sores over much of my mouth and throat. I had a small headache last night that I assumed would go away with a night of sleep. But I couldn't get comfortable enough to sleep. My mouth guard (for clenching my jaw) was rubbing on the sores, so I decided to take it out. Then I chomped down on my tongue and got a big hematoma on my tongue.

I decided to try what they call radiotherapy--a magic mouthwash type rinse that isn't drying like magic mouthwash. That seemed to help somewhat with the pain. But the headache just got worse. I knew that Ativan made me very sleepy the day after I took it at midnight so didn't want to take any. Because I have no neutrophils (and my temperature has been elevated--but not high enough yet to be considered  a "fever") I cannot have Tylenol. I tried an ice pack, which didn't work. Finally at about 3:30 am I agreed to take a low dose of Oxycontin--which I wanted to avoid as much as possible this stay. I'm not sure if it helped with the headache, but I was able to sleep for a few hours.

I have no appetite and am having trouble forcing food. Previously my days had been nicely broken up by meal (and snack) times. Now I dread meal time. I've been ordering some solid food each meal to attempt to eat, but subsiding mostly on protein shakes--which are still not great, and hurt my mouth and throat.

My blood work was decent today in that I didn't need platelets, red blood cells, or magnesium (hoping that trend continues with the oral meds). Still no neutrophils. Tomorrow is methotrexate #4 and I'm scared because it will likely make things (counts and mucositis) worse. But I will be happy to have that last med crossed off my checklist and then hopefully the climb back up will be able to begin.

Today was a cap change day, so I was able to be disconnected from the IV for several blissful hours. Earlier in the week I envisioned myself walking all over and being super active to enjoy my freedom, but I was only able to take two short walks. So tired...

Still felt good to wear my own clothes

As I walk around the unit, I see some of the other patients--either walking the halls, or working with PT/OT, or in their rooms. There is one patient on the other side of the floor who is in really rough shape. I have no idea whether it's transplant-related or GVHD-related or something else, but this patient is wrapped almost head to toe, does not get out of bed, has a feeding tube and always has a room full of medical staff. It's scary to see, but it also reminds me that while I may not WANT to shower or walk some days, that I am able to do both and that alone is a tremendous gift. This patient inspires me to push and also to appreciate what I have.

My hair is falling out. It's amazing how quickly that happened, as I've been gently tugging at my head, wondering when it would happen. Today I didn't even try, but saw hair on my pillow. Sure enough--it's coming out in clumps! I'm reminding myself that this is just more evidence that the chemo is working! (in case the mouth sores weren't evidence enough.) Unlike the past leukemia chemos, I'm pretty sure that this time I'll be completely bald again. And I'm glad I brought hats from home because I'm suddenly cold again.

I am planning to use topical lidocaine to numb parts of my mouth before meals and try to get some food in each day. No more being tough and putting up with the pain! I've asked for Ativan early tonight so I can hopefully sleep through the worst of it (besides night time labs, vitals, etc.).

But again, I'm just where I am expected to be--none of this is cause for concern or unusual. And it's another day in.

Day +9

After convincing myself that things wouldn't really get rough until after the final methotrexate, my counts all tanked today and I slept a lot.

My WBC are down to 0.1 and I have no neutrophils. 

My HGB dropped to 6.5 so I got blood this morning.

My platelets dropped to 23K.

Despite taking oral magnesium, I needed IV magnesium today.

And I was just ridiculously sleepy. I didn't rally enough to shower until after noon. I only walked a total of 15 laps today--slowly. No biking. I tried to knit, but kept nodding off. I tried to watch TV, but kept nodding off. I tried to read but kept nodding off.

My mouth is very sore. I have a big white raw patch under my tongue, smaller white patches on both cheeks, and my throat hurts when I swallow. As the day went on, my throat felt a little bit better, but the majority of my nutrition was in soft and/or liquid forms today.

I was also very weepy today. I blame the overcast weather for at least part of it. One of my Team Phoenix sisters, Vanessa, visited me from outside my window this morning and that brought tears. When the PA rounded and asked me, "how are you doing today?" the tears came. And then Dr. Chhabra rounded and asked how I was doing and again the tears. I watched Call The Midwife and sobbed. I saw Class of 2020 parades on Facebook, which made me weepy. I looked through my binder of signs from my parade and my eyes filled. Then I let myself cry in the shower, thinking about how much I miss being home, seeing and being near my husband, and how much easier this would be if I was allowed visitors like I had been during my first stay at St. Luke's. And then my head was clear and the fact that I am safer this way came through. I've been here 15 days already. That's not nothing.

I made it through another day. That's one day closer to being on the other side!

Day +8

It is amazing how little it takes to make for a good day--essentially just the absence of anything truly yucky.

Today, with the help of my transfusion, my platelets were 34K, so no Benadryl sleepies. With the modified magnesium levels, I didn't need supplementation, so no upset stomach from that. And I'm still rocking the one-armed tank top, so no hospital gown!

The mucositis is perhaps a little bit worse, although not terrible. Dr. Chhabra (this week's rounding doctor) did tell me to expect it to get worse after my fourth methotrexate on Saturday, though. I was surprised, as I didn't notice much with the others, but the effects are apparently cumulative.

My counts (other than platelets) continue to drop, exactly as they should. I have very few WBCs and neutrophils, which means that any mucositis will be difficult to repair. But Dr. Chhabra also said that, on average, we should expect my counts to begin to go up next week. I clarified that I had marrow and he said that on average peripheral stem cells begin to increase on Day 12, and bone marrow on Day 14. That is earlier than I'd been led to believe before, and he stressed that it is, of course, an average and it could be later. (But then again, being an average, it could be earlier, right?) At any rate, since I like to chunk things, I have now chunked the rest of this week (through Saturday) to be just steadily getting a little worse, then lots worse Sunday until maybe Wednesday of next week, if I'm lucky. That is a much more manageable chunk in my mind.

The other thing we're trying has to do with the magnesium supplements. Tacrolimus (the anti-rejection drug that I'll be on for about 6 months) eats up magnesium, so I'll likely be needing the supplements that whole time. Right now I get it as an IV infusion and it upsets my stomach a LOT after I get it. The other option is to take giant magnesium supplement pills--and lots of them. They are going to let me try to take the oral supplements and see if I do better on them and if I'm able to maintain an adequate level. Fingers crossed, because I'm convinced that's the issue right now.

My appetite continues to decline, but I'm still eating solid food. I have to chew very carefully and swallowing hurts some. I am expecting that my diet will soon change to only soft, cold things. I'm going to try to keep eating regular food as long as I can, but at least there are plenty of options here that are high protein and soft or liquid.

Day +7; my marrow is a week old!

As expected, my platelets dropped low enough that I needed a platelet transfusion this morning (9K). Since my allergic reaction in January, I now have to be pre-medicated with Benadryl before getting platelets. It was a sleepy morning. I was woken at 4 for vitals, 5:30 for pre-meds, 6:00 for the transfusion, about 7:00 for orthostatic blood pressure... Benadryl completely knocks me out, so I was falling asleep while getting my blood pressure taken. I slept through my 7:00 Zoom social, which made me sad. I was too sleepy to do an early shower, as I had been doing, and even at noon I was still feeling the effects. Ick... I think my visualization tonight will include extra platelet manufacturing vibes!

I was able to figure out a temporary fix for the hospital gown issue. I have been wearing strappy tanks since my explant last summer, and they are stretchy enough that they will stay up with only one strap but I can step out of them and it won't impact the PICC line. It's a little chilly (bare shoulders), but so superior to hospital gowns that I am fine with it. And no itchies last night!

When I did my afternoon laps today, I was greeted by a cheering team from PT:

Pom-poms and cheering

I got a completion certificate, a gift certificate for two free yoga classes, and this cool t-shirt

And this medal that's on my door so all the other patients can be encouraged to complete it. :)

Today was Dr. Shaw's last day of her rotation (the transplant doctors rotate weeks), and she's not back until mid-June, so I may not see her again. I have really enjoyed seeing her every morning--she is obviously brilliant, and also great at listening and explaining things. She would talk about non-medical things with me, sharing stories about her family and interests (she's a swimmer), and remember what I'd said about my life. It was a little like a morning coffee with a friend every day. And I'll miss her.

As I keep ticking off days, I am reminded that I was told, in general, that the first week in the hospital wouldn't be awful--just getting chemo and figuring out the routine. That I should feel pretty good. And then I'd get my transplant and feel pretty good for about a week, too, as the chemo wouldn't have completely knocked everything out yet, and my new cells wouldn't be engrafted yet. And then the week after that week would be a rough one--knocked out by the chemo and no new immune system yet. Mucositis, low counts, transfusions, fatigue, loss of appetite, etc. Today starts that rough week. My mouth is much more sore as of today and it hurts a bit to talk. I am still eating, but hot foods (like my beloved soup) are more painful than comforting now. I'm a little worried about what this next week plus will bring, but I am thrilled that I'm at this point now. I've made it this far, and the only way to get through it is to go through it, so here we go! (And maybe it won't be as bad as I fear.)