Four out of five granulocytes transfusions completed

 First off, thanks to all of you who reached out over the last few days, but I didn't reply to at all. I was barely able to look at my phone much of the time (but I'll get to that), but I read them all in bits.

Today during my MRI (I'll get to that, too), I tried to get through it by writing my next blog post in my head. And then I got back to my room and was visiting by the doctor on rounds this week (Dr. Michaelis), who is wonderful, but told me something. She told me that she knew that all of this stuff with the granulocytes was extremely stressful and that it hits at the core of our "fight or flight" response. But she needed me to stop obsessing (that's not what she said) about everything about this treatment--counting and self-rationing meds, worrying about fevers, etc. And she said that I should trust that my team is on top of things and they will let me know when they need my input. She also said that I am, despite these big set-backs, a very healthy person (my heart, lungs, kidney function, etc.) and that the granulocyte transfusions seem to be working. I should trust in the process. Also, I should use the meds that are available to me and not suffer.

So with that being said, I'll work back to my difficult couple of days. First of all, it was finalized that I would receive a total of five granulocyte transfusions. The first two (Friday, Monday) came from one donor, and the other three (Wednesday, Thursday, Friday) will be from a different donor. Each has had an expected arrive time, and they've all been wrong. :) It just makes it a little hard to plan things like other IV meds when they're expected at 3:00 but don't arrive till 5:30.

I described in detail the Friday infusion. The others (so far) have not been that intense, but have been more "classic" granulocyte transfusion reactions. For me, that means high fevers and rigors. I've gotten enough pre-meds (after the first two times, they added a steroid) that the actual infusion goes fine. But afterwards it's a mess of fever-med-fever-med cycling. Every day we learn a little more and are better able to deal with it, but it has left me with days where I'm either feverish and really uncomfortable, waiting for the next dose of meds, or I'm doped up because I just took meds. So I've been out of contact quite a bit of that time. I will probably be mostly out of contact the next few days, too, as this all works through my body. But I am hopeful that it is working, and grateful for the medications that allow me to handle it all.

Last bit on the MRI: I woke up Saturday with a very sensitive spot on my left ankle where it meets my foot. It hurt to even wear socks! I mentioned it on rounds, and it came up again the next day. So to "rule out that the fusarium has impacted the bone," I got an x-ray of that ankle. It didn't show anything definite, and had some comments about possible previous trauma (I'd sprained it before), but I wasn't worried. Then yesterday the who thing was again sensitive, but the area was reddish and warm to the touch. Thus the MRI. I don't have results from that yet.Essentially I'm just hanging in here, taking it one day at a time. I'm trying really hard to relax and just get through. I've been using some meditation and some essential oils. And I'm also really happy that tomorrow is my last one of these. :)

One granulocyte infusion done!

Whew...

I was told earlier in the day that my donated granulocytes would be infused about 8:00 pm on Friday. Visiting hours end at 8:00 pm, but I was worried about how this might go so I asked Greg to stay, at least for the first fifteen minutes. Luckily our nurse was willing to ignore that he was in the room.

I needed to receive Benadryl and Tylenol before the transfusion to minimize a reaction to receiving blood products from someone who is not me. Granulocytes are much more likely to cause a reaction than either platelets or red blood cells, and I already had one reaction to platelets, so that made sense. My nurse said she preferred to wait for the product to be on the floor before giving me my pre-meds, because blood products are often late. In addition, granulocytes have the shortest life after being harvested of any of the blood products, so I knew we had to get them in ASAP. The infusion instructions said to infuse over 2-4 hours. The slower the infusion, the lesser chance of reaction, but of course the longer time of the cells not in my body working, but potentially dying in the bag. I negotiated with my nurse and we agreed on a three hour infusion.

They weren't here at 7:30. Or 8:00. My nurse was calling over and over to see when they'd arrive. They had to be couriered from the donation site (not sure where) and then irradiated at the Froedtert Versiti, and then they'd be delivered to the floor. My nurse was also worried about time and discussed with Versiti that when they arrived on the Froedtert/MCW campus, they'd call her and she'd start the pre-meds. 

I was getting more and more nervous and worried about this life-saving donation being completely useless if it was too late. We waited. Finally about 9:15 (Greg was still here), my nurse heard from Versiti that they had the donation and were treating it. I got pre-medicated. But the donation didn't arrive in half an hour. My nurse checked and said half an hour before transfusion is the minimum, so I'd still be okay. We waited. Greg and I were both falling asleep. And they they arrived at about 11:00. Unfortunately they expired at 1:10 am, so they had to be infused over the shortest time (two hours).

Greg waited and the nurse stayed in my room for fifteen minutes to monitor my vitals and make sure I didn't have any classic reactions. I didn't feel anything. I was just tired. The fifteen minutes were up, and  Greg and my nurse both left. I settled in to do some visualization of the cells traveling to each of my fungal spots and working their magic. (By the way, if you haven't watched Cells At Work, it's all really good, but the neutrophil animations are especially accurate and relevant--just know that I was given a TON of neutrophils so it was even more chaos.)

Not even fifteen minutes after the nurse and Greg left, my nose started running like a faucet. Then I was sneezing like crazy. At the same time, the stye in my left eye was throbbing and swelling so much that I couldn't open my left eye. As that continued (I had to find another box of Puffs Plus), the entire front of my face was hurting. My upper teeth ached so bad that I had to remove my night mouth guard. Still more sneezing and nose pouring out stuff. My nurse checked on me and asked if there was anything she could do for me. I didn't know what that would even be, and I certainly didn't want to stop the infusion (or even pause it, since we had no wiggle room on the expiration time). I told her I wasn't having trouble breathing or itching or any other typical reaction. I wondered if it was really the neutrophils working that quickly.

Neutrophils are the most abundant white blood cell (in healthy people). Unlike the branch of the immune system that has memory to prior exposures and makes specific antibodies to remember specific exposures (thus the science behind an immunization--which takes awhile to take effect), the granulocytes (neutrophils, basophils, eosinophils) are the immediate response. They are non-specific, so if something that is foreign enters, they hit it right away. When I had mucositis following my stem cell transplant, I only needed a few thousand neutrophils to show up before I started feeling better. In fact, I felt better even before they were measurable in my blood. But remember this transfusion was loaded with neutrophils.

So they flooded every part of my body that had something foreign present. Thus the sinuses (I'm assuming that there was/is fungus in there), my eye stye, maybe the random bacteria in my gums since I haven't had my teeth cleaned in so long? And my fungal skin lesions. Every single one of them started to throb. I'd been told I had four spots on my back, but couldn't see them. I felt them. I felt it in my biopsy site, where my first spot appeared, on my upper lip, and several on the soles of my feet. It was excruciating! I tried to visualize over the pain. I felt that this HAD to mean that this treatment was working and doing exactly what it should. I made it through the two hour infusion. But the pain didn't go away. In fact, about an hour after the infusion completed, it got worse. (My Tylenol had worn off). I couldn't open my eyes (throbbing stye plus photosensitivity) but actually asked the nurse for help with my pain. I didn't think I could take Tylenol again, and so she suggested oxycodone. I hate opioids with a passion, but I remembered how they helped me get through four miserable nights with mucositis and that I didn't get addicted. I agreed. But the doctors on call wanted to use Tylenol instead. Finally, after not napping all day Friday, and staying up through the infusion and aftermath, sometime between 3:00 and 4:00 am, I fell asleep.

When I woke up this morning the throbbing in my sinuses, eye and teeth was gone. As soon as the morning Tylenol wore off, the pain in the fungal skin spots returned, in addition to "flu-like symptoms" including chills and body aches. I needed more sleep. I took more Tylenol and slept more. When I was due for my next Tylenol dose, it had to be delayed due to taking Tylenol before the anti-fungal. So I hung out in fetal position and made it through. I am happy that the Tylenol seems to be doing the trick.

But how amazingly cool is this all? To actually FEEL the attack of the neutrophils all over my body? I talked to Dr. Swanson about it to make sure I wasn't over-simplifying things and she said it made sense. Furthermore, she examined my spots and showed me the proof. The flat marks now had true heads, filled with pus, which is the dead neutrophils after their work is done.

I am in awe--again of my donor who must have been at Versiti much longer than they'd expected, and will be in the future. But I'm also just blown away by the human body and how, when it works, it works!

I don't think this has taken care of everything, but it's made a good start. And I have to say that I'm also really very happy that I don't have to do it again tonight already. I'm hoping for a few good night's sleep and maybe decreasing pain without medication. And then I'll be ready to do it all over again on Monday (and Tuesday and Thursday, apparently). Thank you, amazing donor!

 

Baby steps up

Not much has changed since yesterday, and a few little things have been added--namely I also have a bacterial (strep) infection in my blood which has caused fevers today. But I got so much "good" news today that I wanted to share.

All tests looking for fungal infections other places in my body have shown no sign of fungal infection! That includes:

Sinus CT

Echocardiogram

Chest CT

Abdominal CT

Third (and final) nasal scoping

It doesn't mean that there isn't more Fusarium somewhere, but there doesn't appear to be any obvious hidden site. That means less to clear when and if I get functioning neutrophils, which is good.

But the biggest news is that during rounds I was told that they have secured a donor to do a granulocyte transfusion! I don't know many details, and they are very rarely done, so the nurses and many of the APPs haven't seen one, but theoretically at least (since I haven't heard anything definitive), I will start receiving what is essentially a "neutrophil transplant" tomorrow. As mentioned earlier, they aren't always effective, and there can be icky side effects, but this offers me a chance to fight off the fungal infection and allow my counts to recover. 

This is possible because someone matched me, was contacted by Versiti, and agreed to come in today to receive a neupogen shot and steroids, then to return each of the next three days to donate their granulocytes (similar to a platelet donation or double reds where needles are in both arms and the blood cycles through a machine to separate parts out). Wow. They received a call today with a 4-day commitment and agreed to it. I am blown away.

I'll try to share more details as I know them, and since I haven't actually heard a fully laid-out plan, I guess I'll believe it when I see it, but I am excited. 

And thank you all for your Facebook replies, blog comments, personal messages and texts yesterday. I cried a lot last night, but they were happy tears as I reminisced with so many of you. Thank you for such a wonderful gift. And thanks to those who have driven past and waved to me in the window. Today my visitors were announced by the roar of two Harleys. I told the ID doctor that was my cue and I had to get to the window. So wonderful to see your faces, even from far away. 

I continue to feel so unbelievably surrounded by love. Thank you for the best feeling, as I drift off to sleep, still visualizing my new marrow making neutrophils.

And then it all comes crashing down

I was feeling pretty good mentally after the weekend and making it through all steps in the clinical trial. I was growing tired of my hospital stay--the food, the boring lap-walking, being mostly stuck in a single room. But I did have this strange red spot on my forearm that hadn't been much of anything, but my hospital bracelet poked it constantly and it was getting irritated, so I told my nurse about it. She decided it was worth mentioning to the doctor, and that's how I won myself another punch biopsy from Dermatology. Dr. Carlson didn't think it was necessarily a concern, but it looked different from the earlier lesions I'd had (they were flaky and peely but not painful), and then we started looking elsewhere on my body and found at least half a dozen of them. I remembered that I had actually entered the hospital with a similar spot on my left thumb, which was unique because it had a sort of "head" on it, and I didn't remember bumping it anywhere. I asked Dr. Carlson what it could be and she said it could be another generic "dermatitis," it could be something called Sweet's Syndrome, but what they wanted to rule out, which would be very dangerous, was a fungal infection. I stopped complaining about needing another invasive procedure because my friend Kelly's son Logan died from a fungal infection after his bone marrow transplant. I definitely wanted to rule that out.

Tuesday morning the Dermatologist popped in to say they didn't have news yet, but they were thinking it was Sweet's Syndrome.

Tuesday afternoon two dermatologists came in my room and as they were talking to me, Dr. Carlson came in. Unfortunately, the biopsy showed a fungal infection. They don't know exactly which, but that it is a "septate hyphae" fungi, likely either Aspergillis or Fusarium. They explained that they'd contacted Infectious Disease, who would meet with me to explain some things.

I'm not going to mince words. This is really, really bad. You can try to prevent fungal infections with anti-fungals (I was on many, but had to go off for two weeks to protect my liver), but you cannot CURE a fungal infection with them. The ONLY way to cure this is to have neutrophils to fight it. And my clinical trial has a known prolonged recovery time--meaning at least three weeks and likely more since I'm on the step-up dose. Anti-fungals will probably not be able to hold back the infection that long. The likelihood of my body producing neutrophils in time is slim. 

This is very possibly how my life will end.

Apparently a fungal infection in a severely immunocompromised person is a Big Deal, as very quickly I had numerous specialists in my room, back-to-back.

Almost immediately after, Infectious Disease came to see me. They are continuing the Voriconazole which I'd resumed taking when my liver function improved from the Myelotarg, but they also added an IV anti-fungal called Amphotericin-B. I will receive that once daily, and it's side effects are chills and rigors. They pre-medicate with Tylenol and Benedryl.

The optometrist did a full eye exam in the room. My eyes have been very sensitive to light from the cytarabine, plus I have eyelid swelling that started Friday. When he dilated my eyes and then shone the bright light in to look at the back of my eye? That was excruciating! And my eyes stayed dilated and extremely photosensitive until today. Ugh. He said my vision is normal--maybe needing a slightly stronger prescription in the right eye--and the thing on my left eyelid is a stye. (Now I just heard that ophthalmology is coming back to look at my eyes again. I will be again be dilated and not able to write, so I'm just going to hit publish. I don't know that I'll be able to view screens any more today.)

Echo came into the room and did ANOTHER echocardiogram to check for fungal growth on my heart valves.

Ear, Nose & Throat (ENT) were next. They looked in my ears and at my throat and then they stuck a camera in my nasal cavity toward (into?) my sinuses. This, too, was really, really, really awful. The ENT actually wanted to go back in the right side because she "saw something concerning," so I had three of these.

Then Infectious Disease came back in and talked more about Fusarium. He's only had one other patient all year infected with it. He had AML. He died. (I wanted to know.)

Then I went down for another CT scan of my sinuses to see if they have worsened.

I started the Amphotericin, and the pre-meds worked. However, when they wore off, my temp rose to 101, which delayed my receipt of platelets and won me more blood cultures!

This morning I was woken up by ENT to scope my nose again. Still really bad. And I just learned that they're going to do it again tomorrow morning. They're looking for changes indicating fungal growth, and if they find them, I get a trip to the OR so they can scrape it out of my sinuses.

I then had several visits from "the team" (Dr. Carlson and her PAs, med students). A plan of sorts emerged, although everything still depends on so much that we don't know yet.

1. Infectious Disease stopped in to let me know that the culture shows that it is, in fact, Fusarium. 

2. I had a chest and abdomen CT scan today to see if there is any sign of a localized fungal infection in either of those. I am getting daily nasal scoping to look for progression in the sinuses. 

3. I'm using wetting drops for my eyes, plus two ointments.

4. I'm receiving Neupogen (GCSF) shots daily. These boost neutrophils a day or two before they'd naturally appear. Since we don't know when/if my marrow will recover, I guess it's one more layer of possibly speeding up their appearance.

5. Dr. Carlson is looking into the possibility of a granulocyte infusion. I didn't even know that was a possibility. This website explains it really well. Basically the best match is both blood and HLA matched and it's not guaranteed, and it's got icky side effects. The ID doctor seemed to think that unless I took a turn for the worse and it was truly my last option, waiting for count recovery might be better. I'll let them figure it out.

After all that, I'm just going to say that this sucks. I am so very sad about it all and yet I have not completely given up. I'm just afraid I'm a lot closer to that last goodbye than I'd hoped.

And now we wait

 Thank you, everyone, for sending leukemia blasting thoughts, prayers, etc. on Friday. I felt completely surrounded with love. The procedure itself was almost anti-climactic. I was transported down to the nuclear medicine area and set in a very small (tight quarters) bay. Due to the clinical trial, I had to have a nurse with me throughout, and she had a new trainee, so he came, too. Then there was the nuclear med specialist and her assistant. They brought out a capsule that looked somewhat other-worldly and had radiation symbols on it, but the only precautions they took were wearing gloves. It was explained that this antibody emits alpha radiation, which is essentially stopped by almost anything (gloves, plastic, paper). They took out a giant syringe filled with a yellowish liquid and inserted it into a machine that dispensed the contents over 30 minutes. The machine was connected to one of my PICC lumens, and that was it. My vitals stayed great throughout (and for the hours afterward that they had to check). I didn't feel anything or any different (actually, I felt better because one of my pre-meds was Tylenol, but I'll get to that later). And now I spend any downtime visualizing my leukemic cells getting toasted by this amazing antibody.

Now I'll go back to a bit before the lintuzimab infusion. Thursday night after Greg left, my nose just started running like crazy! I couldn't even knit because it was dripping that quickly. I also felt like I had some sinus pressure on my left side. That seemed strange because I end up with sinusitis almost every year and it ALWAYS hits my right side. I could still breathe, but I slept with kleenex under my cheek all night. When I woke up on Friday, my left side was even more sensitive across the bridge of my nose and I couldn't stand the sunlight. When I was brushing my teeth, I looked in the mirror and my left eyelid was red and swollen. So I called the nurse, who talked to the doctor, who came to visit me, and (of course) wanted to rule out things, so I got a sinus CT scan (showed low grade sinusitis) and a nasal and throat swab for every virus known to man (all negative). The verdict was that it was likely due to the Cytarabine (the A in CLAG-M), which is the drug that can cross into the nervous system. I'd been getting prophylactic steroidal eye drops, but they stopped on Wednesday. Dr. Carlson said she'd order a stronger steroid eye drop to use until the redness went away and for a few days after. I felt almost immediate relief when using the drops. I had spent most of the day both Friday and Saturday either asleep or with my eyes closed (or keeping the left eye covered if I needed to look at things). It was a rough few days, but I am happy to say that this morning I woke up feeling MUCH better. You know how it is when you feel so cruddy for so long that even a tiny improvement makes you feel like you're on top of the world? That was me today. Chatting with friends, walking the halls, taking a nice long shower....

I know many of you have asked when we know if this regimen is working. We won't know for several weeks, and it won't be until a bone marrow biopsy. I was tracking my blast cell percentage in the peripheral blood, but my WBCs are 0.1, so they can't do subsets of the WBCs and therefore I can't check blast counts. The big thing now is recovery of my marrow ("my" marrow actually being my donor marrow from May--the healthy stuff). I know that those who did this regimen with lower doses of lintuzimab had very delayed cell recovery. My doctor says at least three weeks (not sure when the three weeks counts from). If it doesn't recover after 40 days, I'll need more new marrow. So there's a lot of waiting without knowing anything. I know I don't have to be fully recovered to be discharged, but I do need to be less transfusion dependent (I've gotten blood and/or platelets every other day I've been here). So I wait, and try to be patient.

I have been so lucky to have Greg able to visit me every day. Even on days like yesterday where I laid curled up in a ball, protecting my left eye, and barely interacted with him just knowing he was there was amazing. Friday we made the best of our anniversary that we could. I had all those icky sinusy symptoms and didn't know if it was a cold or something else, but we got permission for him to pick up Vietnamese food. He had a Bahn Mi, and I had a specially-prepared giant bowl of pho (vegetables pre-cooked; no raw ones; extra hot broth). It felt somewhat normal in a strange way. The kids did a Zoom dinner with us, and it was a great way to mark 27 years of marriage. 

Today we played cards and shared a "cheese platter" from the cafeteria. We make our own special times. And we keep hope alive. I've started thinking about the future more than I have since last November. It may well be premature, but I'm rather enjoying it. Here's to 2021 being healthier and less pandemic-y. And really, why not more cheese-y?

Time for the big guns!

When I checked into the hospital last week, I was told that I would likely start to feel the effects of the chemo on Day 7.  They were right!

Last night I just felt generally yucky. My nose was runny and my head was stuffed up. I expected to have a low grade fever (I can usually tell when my temp is in the 99's) and I did--which meant that I had to be monitored more closely all night. They stopped the steroids, so I am having a bit of a steroid dip. My stomach isn't terribly upset, but it's just not right. And I am just exhausted! Today it was difficult to even sit up in bed--I was a puddle. All of this is to be expected, so no concerns. You just forget how cruddy it is until it hits you again.

I didn't need any blood products today (my hemoglobin even ticked up a bit on its own), and my liver function tests continue to drop. Unfortunately my blast percentage inched up a little more again. Dr. Carlson said not to worry--that tomorrow's Lintuzimab is what should knock things out.

So that brings me to tomorrow. This is it! If you light candles, send positive light, pray, whatever, then I can use all your directed energy tomorrow afternoon. The tentative plan is for me to get pre-meds about 1:00 tomorrow afternoon, then go down to nuclear medicine with a dedicated nurse to monitor my vitals. I'll theoretically start the half hour infusion at 1:30 (depends on exactly when the med is mixed), and will be monitored closely for at least 90 minutes. In preparation for the infusion, they'll start IV fluids at midnight tonight (the lintuzimab is hard on kidneys) and I'll have them throughout the infusion and through tomorrow night. It'll be a long day, and I expect I'll still be feeling pretty icky (much like today). But I am excited to get this part done so I can start my recovery from it. 

Thank you again for all your well wishes. I plan to kick it big time tomorrow afternoon and hopefully get through to the other side. I know it won't be easy even after this infusion, but it's what needs to be done. Let's go!

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!

Almost there

Sorry it's taken a few days to write. I've been waiting to get all the details I could. Also, I felt really awful all weekend without even enough energy to blog. Sunday night I had a fever high enough that I actually called in. It eventually dropped into the normal range, but I had that icky low grade fever thing going on.

Yesterday was a very exhausting day. My appointment wasn't until the afternoon and I was pretty sure I'd need both platelets and red blood cells. By the time we got to Froedtert at 2:00, I was wiped.

My WBC are zero.

My PLT were <5k (eek!  That explains the purple blotches everywhere)

My HGB was 6.7 (and that would explain why I could barely stay awake)

Unfortunately my blasts climbed up to 73%.

So I got a unit of platelets, a unit of red blood cells (they would have given me two, but the Day Hospital wasn't open late enough to get the second unit), and Dr. Atallah doubled my Hydroxyurea dose to try to drop my peripheral blasts.

Dr. Atallah said that the clinical trial looked good, but the team wasn't meeting until Tuesday morning. Tentatively admission would still be on Wednesday with treatment to start depending on when I went in. Luckily, they lifted some of the visitor restrictions this week, so it's back to one visitor being allowed for the duration of the stay on all but the bone marrow transplant unit. As much as I loved all the nurses on 9CFAC, I'd rather get to see Greg! So I'll be on either 7 or 8 CFAC.

I had read up about the previous iterations of the clinical trial and so (or course) I had a bunch more questions.

One of the write-ups of the early results said that they'd seen positive results in both "intermediate and poor risk cytogenetics." I asked Dr. Atallah if any of the "poor risk" patients had the tp53 mutation and he said yes, multiples. That's exciting!

So Greg & I headed down to Day Hospital where I asked if they could speed things up because our new dog was supposed to arrive at 7:30.

Unfortunately, my body didn't cooperate and when they did my pre-blood vitals, my temp was 100.2. They called the blood bank to hold the blood and waited for a return call from Dr. Atallah. When he called, he said they could give me Tylenol and proceed with the transfusions. 

The good thing is that the Tylenol lasted long enough to get me home and Kravitz's arrival was only delayed half an hour. But then I crashed! Luckily Ash did a great job with Kravitz last night.

This morning Travis and I took Kravitz to his first vet visit. (Poor guy has been through so much in the last month.) Kravitz is settling in well. Here's some obligatory cute photos (although the cutest stuff is when he flops down or stretches and yawns).

This afternoon I got a call that I needed a pre-admission COVID test, so I figured that meant I was in the trial. :) Basically I need to be negative for COVID and pass some other screening tests (labs, EKG, echocardiogram) and a bed needs to open up, but I should expect to be admitted sometime tomorrow!

I also got a call from the Clinical Trial nurse who walked through the consent form with me (other than signing it). She apologized for not having a copy for me to read through, but apparently they only finalized it this morning.

So I learned a bit more.

This trial (CLAG-M + lintuzimab) was supposed to have stopped with a dose of 0.75 uCi/kg (earlier trials were 0.25 and 0.50). However, the lintuzimab was so well tolerated that they asked the FDA to try dosing it at 1.0, and if that's safe, at 1.25uCi/kg. And I would be the very first person to get this dose of this combination. (I've always been a guinea pig :)) Other trials have used lintuzimab alone or with other chemo combinations at this dose, so it's not that I'd be the first person to get this high of a dose of the lintuzimab--just in this combination.

If all goes well, I get admitted and do pre-admission tests tomorrow. Thursday they would administer a dose of G-CSF, which is the "G' in CLAG-M. It is an injection that stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream, priming me for the chemo. This repeats for five days (and sometimes after the regimen to promote the rebound of counts).

Friday I start Cladribine (CL), which is a two-hour infusion and Cytarabine (A), which is a four-hour infusion, for five days. I also start Mitoxantrone (M), which is a 30 minute infusion for three days.

Then I take a few days off before a big, long day. In preparation for the lintuzimab, I start pushing fluids (drinking and IV) in the morning. Mid-afternoon (probably about 2:30), I will get one 30 minute infusion of the lintuzimab. Because it is radioactive, I will receive it in the nuclear medicine department. A nurse from the blood cancer floor must accompany me, and also watch me for two hours after. 

And then we wait!

The Friday that I receive the lintuzimab (October 2nd) will be our 27th wedding anniversary. I am reading this as a good omen. I am also somewhat excited about being the very first patient to receive this regimen at this dose. And I'm also choosing not to think about things that might come after (non-recovery of counts, etc.). The last few months have been really, really hard. And disheartening. But I think I had to get to this point. Two months ago I would have had a really hard time going back into the hospital again. Feel free to remind me of this when I complain in two weeks, but I am ready to return. I've got this hospitalization thing down! And Greg can visit. I can do this. :)

C'mon Clinical Trial!

 Unfortunately it's not a particular great day here.

After two treatments, it's obvious that the Myelotarg is not working. My peripheral blasts are up to 74%! That is WAY higher than they have ever been before. And Dr. Atallah came to visit me in the day hospital, so I knew it wasn't good.

My other counts aren't much to write about.

WBC: 0.8; ANC: 0.01; HGB: 8.2; PLT: 8k; 

Liver function tests are still elevated, but not as high as two days ago: AST & ALT both 139

I have been getting platelets about every other day, both because the leukemia has completely taken over, and any meds I'm getting impact platelet counts first and the other blood cells later.

They are discontinuing the Myelotarg. I started on a new oral chemo called Hydroxyurea in hopes that it will knock down the blasts and buy me time to hopefully get into the CLAG-M + lintuzumab clinical trial. Dr. Atallah said that it has made it through FDA approval and just needs internal Froedtert approval. As a reminder, this is the third increase in dosage in the Phase I trial. Phase I trials are only used to determine if a regimen is safe to administer to patients. Therefore, every patient gets the treatment. This is the highest dose they plan to give in this regimen. Thusfar the lower doses have had excellent results, which you can read about here or here.

I will hopefully enter the hospital next week. I’ll likely be on 7CFAC and they’re working to allow visitors. I'm not sure if it will be like last time where I can only have one visitor for the duration of my stay, or if they will allow multiples. I'll certainly let you all know when I find out.

Straight talk:

This is quite likely my last chance. Furthermore, by increasing the dose (clinical trial), it’s possible that my counts won’t recover (Dr. Hamadani has ideas on how to remedy that, but it’ll mean a much longer hospital stay—closer to two months.) Still, I'm trying to be as positive as I can. The results in even patients with high risk cytogenetics has been pretty good. The cool think about the lintuzumab is that it is not chemo, but a radioactive element that works even on leukemia that has burned through several chemos. Since this is a Phase I trial, it's only looking to determine the maximum safe dose, and therefore what happens after the treatment is up to the doctor's discretion. So as long as I survive the CLAG-M + lintuzumab, Drs. Atallah and Hamadani can do whatever to keep me in remission (or treat me in other ways, I guess). That's hopeful.

Since I may not get out of the hospital until Thanksgiving time, I guess I’ll try and pack in as much outdoor, fun stuff as possible the rest of this week!

And I sure hope this treatment works.

p.s. just to end this post with a happy thought, here's a photo of Kravitz that his foster mom sent. I will hopefully be in the hospital before he gets to join our family, but we're trying to arrange a play date this weekend so I can store up some Kravitz love for the hospital stay.

Day +114

Tuesday was my lumbar puncture and when I left, Kim (the PA) told me that results would be in on Wednesday or maybe yet Tuesday afternoon. So when I didn't hear Tuesday or ALL DAY Wednesday, I was panicking. My assumption was that they had found something in my spinal fluid and were working to adjust things, scheduling appointments, and waiting to contact me until they had a full, modified plan in place. Silence... 

And then this morning, right before we headed out for family pictures, Kim called to tell me that THEY DID NOT FIND ANY LEUKEMIA IN MY SPINAL FLUID!

(So my smiles in the family photos are genuine.)

The other medical appointment, dermatology, was yesterday morning. I seem to have baffled both of the dermatologists (the resident and his supervisor). They ended up taking two punch biopsies (which didn't hurt during the process, but now are very ouchy as they're healing). They don't think it looks like leukemia cutis or like GVHD (although they'll test for both). The dermatologist said if she had to guess, it looked like some sort of reaction to medication, likely the Venetoclax. But unfortunately they don't have a test to determine which med--just the likelihood that it's medication-induced. Since I'm on five different meds now, that could be fun to figure out, too.

And I'll leave you with a quick teaser photo from our family picture session this afternoon:

I cannot tell you how happy I am to have my whole family together--even if it's only for a few hours.

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 +104

Thank you to everyone who reached out to me in one way or the other over the last week or so. I realize it's been a long time since I've blogged. I have had a blog post partially-written for about a week, but just haven't had the desire to finish it. But I'll do it today! :)

Even though I'm not on the traditional path as most BMT patients, I had wanted to post on what is still the 100th day after my transplant. That was last Thursday. But when the day came, I just wasn't feeling it. No celebrations, not particularly good news, nothing worth posting. But I *am* on the other side of those hundred days, and I'm still alive, so that's something! 

This chemo (Decitabine + Venclexta) is supposed to be a milder chemo, but it really knocks me out. The week that I have infusions is actually pretty good (other than the annoyance of hospital trips and infusions and waiting). The weekend after I feel a little queasy and not quite myself, but that's not terrible. Then I have a few decent days before my counts start falling. And this nadir seems to last a full two weeks. I'm right in the midst of it now and if this second cycle follows the pattern of the first, I should start creeping out in a day or two.

I have essentially no WBC (ranged from 0.2-0.4; currently 0.2). My hemoglobin has been crappy (7.4-8.8; currently 7.4). My platelets have dropped since my last post (50K - 8K; currently 19K). About the best thing I can say is that (so far) I've needed fewer transfusions this cycle than last cycle, but I've been close.

I also wanted to share information from my last appointment with Dr. Atallah a week ago. Since my WBC counts are so low, they are unable to check my peripheral blast percentage and we won't know if this chemo is effective until my next bone marrow biopsy, which is this Wednesday. I will get results from the biopsy at my next appointment on Monday the 24th. The absolute BEST case scenario is that my biopsy will show that my marrow is clean (send those vibes!). If my marrow is clean and my counts have rebounded some, I'll start the next round of Decitabine that day. If my marrow is clean and my counts are still low, I'll take a week off to let my counts rebound and continue with Decitabine treatment. But if there's still stuff in my marrow (and let's be honest--this is probably the most-likely thing), then we will talk about clinical trials. 

After that discussion, Dr. Atallah said, "now we have to talk a bit about something else." My heart dropped. And he continued, "I've heard that you have concerns about people not wearing masks in the cancer center." <insert sigh of relief> To make a long story short, he pointed out that some patients (like lung cancer patients) may not be able to wear masks and that is between the patient and their doctor. (I did ask if they couldn't immediately put those patients in a room instead of the open lab and waiting room. He said he'd look into it.) I also said it wasn't just the patients, but caregivers. I said that I am an outspoken person and I had a hard time saying anything and that I finally said something for all the other patients who were also being put at risk. He asked me what they could do to make me more comfortable. My eyes welled with tears, and I said I just didn't know. He asked if I would feel better going to a local clinic for blood draws and I said that I knew Mequon didn't draw from a PICC line. He asked how inconvenient New Berlin would be for me. My amazingly intelligent, busy, kind oncologist then called up Google maps on his computer to see how far of a drive it would be. It turns out that the New Berlin office is closed in the interim. But then he asked about Drexel Square. He told me they can do labs and all treatment except for the doctor appointments there. And I clarified that he wasn't going to drop me as a patient. He laughed. Then he called to have my future lab appointments changed to Drexel Square, effective immediately. And he thanked me for looking out for all their patients.

Last Wednesday was my first trip to the Drexel Square Froedtert Clinical Cancer Center. Travis drove me and was allowed into the waiting room, but not back into a room with me. They stated their policy that only patients are allowed (also the main campus's policy, but I know they've given up questioning guests and almost everyone there has a guest), and that they'd allow Travis that day, but not in the future. The first visit I needed platelets, and it turned into a long day because they had to get the platelets from Versiti and had a new courier who took over two hours to deliver them. The second visit I was dropped off and had to wait 25 minutes for Greg to pick me up. I asked a nurse if there was a more private place I could wait than in the waiting room, and she gave me a chemo bay chair (curtained off). Today I didn't even sit in the waiting room--the same nurse called me immediately back to wait in a chemo bay for my lab results. With very little exception (one man in the waiting room my second day with his nose out), everyone has been good about masking. And the waits are shorter than my extended drive time. It's just a lot less chaotic. Unfortunately, besides the delayed courier thing with platelets, they cannot do red blood cells same-day, so if/when I need those I'll either have to come back the next day or head to the main hospital to get them that day. And my biopsy and appointments with Dr. Atallah will of course be at the main hospital. Still, it is so nice to not be as freaked out over germs!

I did something that I hope I won't regret: got the whole family (except Cara) haircuts. My friend Denisa just started at a new salon and she and a coworker came in an hour early, masked, and didn't let anyone else in the shop. We all wore double masks (surgical with cloth over the top). Ash, Greg & Travis had been good sports about letting me cut their hair, but they all look a whole lot better now! As for me, I got two wigs trimmed/styled. I didn't realize that was something you were supposed to do! Maybe why I hated my last one so much? Anyway, all of this is to prepare for having family photos done later this month. Please cross fingers that it doesn't rain on August 27th since we're (obviously) doing outdoor photos. And Cara will be briefly in town.

I'm not completely sold on either of them, but it would be nice to have photos w/o sun glaring off my bald head!

I have continued to (slowly) bike and walk. I'd worked my way back up to a 13 mile ride, but this week (nadir) I'm more of a 2 mile ride person. Luckily I have people who will ride with me, no matter how short of a distance or slow of a pace.

Other than that, I'm just taking it a day at a time. That part is still a struggle for me, but I guess I'm getting used to it. I probably won't blog again until sometime next week (may not be right away on Monday, depending on what we know). Feel free to send positive bone marrow thoughts (which is actually negative, as in no leukemic cells or blasts) on Wednesday at 9:00 am during my biopsy.

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. :)