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 +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 +17

Everything is still on track to go home tomorrow. It seems surreal and I'm not sure I'll actually believe it until I am physically home.

My counts continue to rise:
WBC: 0.7 (from 0.6)
ANC: 0.55 (need to be over 0.5 two days to go home)
HGB: 7.5 (was 7.1; maybe beginning to increase on its own?)
PLT: 18K (for 3 days in a row)

I needed magnesium in the IV again this morning, but then started taking oral supplements at lunchtime, so hopefully won't need the IV again.

I met with the dietitian, learned the outrageous caloric and protein requirements for the first 100 days (1700-2100 calories/day; 90-120 g of protein/day). This is because I'm re-building, and my metabolism will be higher for these first 100 days, and I don't want to draw on any reserves (I actually don't have a lot of reserves). It will be tough to get that much protein regularly, so I ordered some protein powder to add to smoothies and whatever else.

I met with the PT, learned I actually improved my balance and speed tests while I've been hospitalized (woot!), and got some great exercises to do for my upper body when I go home.

Dr. Pasquini explained the plan with regards to meds at home, labs and appointments, and discharge tomorrow. I asked him a question that had been bothering me the last few days. Everyone (him, nurses, etc.) has been commenting that I'm "early" with regards to seeing my counts go up as a result of engrafting. I started worrying that early was not necessarily a good thing, and what if it wasn't actually my new marrow, but my old, leukemic marrow breaking through to produce new blood cells. He reassured me that that was not the case and that there is a range and while it's much more common for engraftment to occur a little later--especially with bone marrow--that it's not a bad thing. The only time they get concerned is if you get to about day +21 and there is no sign of improvement. Even then, it might just be a later engraftment. Since I showed my first signs at Day +13, I was definitely in the early group.

My first post-transplant outpatient appointment was made for Tuesday morning. Dr. Hamadani is out of the office, so I will see his PA Katie.

I know it's going to be difficult to say goodbye to everyone tomorrow. I also missed saying a final goodbye to last week's team of nurses and CNAs since I never dreamed I'd be going home before Monday. Today the two people who have been the most constant in my stay happened to be in my room at the same time and they let me take a photo with them. One is Ari, who is a PA on the bone marrow team. When changes were made due to COVID-19, she was one of the PAs who took on the majority of the in-patient rounding. I have seen her almost every Monday through Friday since I've been here--through all four BM physicians rounding. She's got a wonderful, upbeat, matter-of-fact personality and it meant so much to see her regularly. The other constant in my life has been my "housekeeper"--Stacy. Stacy works every Tuesday through Saturday and from the very start was so warm, chatty, friendly and kind. I looked forward to her visits and we'd talk about everything from our families to politics.

Stacy, me & Ari

Much of today I was just generally restless and antsy. I don't want to pack up my room yet--both because it will look so empty and sad without my cards and photos and artwork, and also because I'm afraid it will jinx my ability to be discharged. So tomorrow I'll find out my counts and if I need any blood products, then will start packing. Greg will come at some point and then if all goes well, I'll be home. Like I said, I probably won't believe it until I'm actually home. But I can't wait.

Day +16

My neutrophils kicked it in!
WBC: 0.6 (from 0.3)
ANC: 0.45 (from 0.20)

Hemoglobin and platelets are low, but held pretty steady. My magnesium dropped a lot and I needed 3 bags via IV. I hope I'm able to maintain my levels with oral supplements now that I'm eating again. Slowly, but surely.

I still have some sores in my mouth and my throat is a little raw, but it is SO much better. I was able to eat solids for every meal and didn't order a single protein shake today. I even took all my meds in pill form without gagging! The 24/7 IV is no more.

If all continues to go well, I will be heading home on Saturday. Because I'm not yet at the 0.50 level for ANCs, and you need them to be 0.50 or above for two days in a row, Saturday is the earliest I could be released. The other thing is that Monday is a holiday, and if I went home on Friday, I'd have to come back to the Day Hospital over the weekend. Waiting until Saturday will allow me to have a regular appointment on Tuesday. Discharge planning started today! I got to watch an expertly-acted video on going home after a bone marrow transplant. The pharmacy is starting to put together my meds schedule. I will still meet with the dietician to learn more about home food safety and need to be evaluated and released by Physical Therapy (probably both tomorrow). When Greg picks me up, he will be able to come up for an hour and we will both have teaching about going home and safety. Greg's been cleaning the house like crazy.

I walked a few times today. I don't think I'm going to get in a second Marrow-thon before I leave (unless I just walk every free moment between now and then...). But I'm okay with that. I felt kind of bored and just generally antsy today for the first time. I think that it's just the fact that going home is in my near future and it feels odd to be here when I could be there. Patience...

My kids are rock stars. Travis mostly moved home by himself yesterday, emptying his apartment and cleaning and packing the CRV before driving home alone last night. When he realized that not everything would fit into the CRV, Cara came through and saved the day, driving five hours round trip to pick up the stuff that didn't fit. It's been so strange to see the memories pop up from Cara's graduation and move home which were three years ago this week. Travis got none of that, and we didn't get to participate in it. Obviously I wouldn't have been able to attend his graduation even if it weren't COVID-19, but everything just seems so surreal.

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 +11

Just a quick update for today.

It's been the hardest day so far.

I did decide to do the radiotherapy before meals. I think it helps some--bringing the mouth pain from toe-curling to just regular canker sore kind of pain.

I am taking oxycontin to help with the pain, too. Which makes me sleepy. I slept almost all day, barely getting up and three times trying to get out of bed, but falling asleep in the chair so I crawled back into bed.

I have no appetite so not only is eating painful, but it makes me gaggy. I try to put something in my belly so that my meds don't upset my stomach more, but it's tough. The staff here are so wonderful and supportive and recommend things and tell me that it's really hard, but I'm doing great and then remind me that this is all temporary.

I got my fourth (and final) methotrexate dose. I am scared of what side effects it may exacerbate, but I am also optimistic. Some people are too sick to receive the fourth dose and while I've got issues, I'm healthy enough to get it (which should provide additional protection against bad GVHD in the future).

Last dose of anything that requires use of the chemo gown and double gloves!

The highlight of my day was being able to attend Travis's virtual graduation from Macalester College. Congratulations, my son, on your BA in Mathematics with a minor in Linguistics. I am so proud of you!

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.)

Day +6

My counts seem to have started their downward descent. WBCs are still hanging on a little bit, but my hemoglobin dropped to 7.7 (transfuse at 7) and my platelets to 12K (transfuse at 10K).  I would be surprised if I don't need at least one transfusion tomorrow.

My magnesium again dropped into the supplemental level, so I got that via IV this morning.

I got #3 of 4 methotrexate pushes. The last one will be on day +11.

Today was a cap change day, so I was able to spend a few blissful hours not hooked up to the IV. I don't know why it bothers me so much, but it's just such a nuisance! Although I was very tired, I was able to do one walk of ten laps in a row when I didn't have to deal with the IV pole and a hospital gown.

Pretty happy to be wearing my own clothes!

Speaking of hospital gowns, for the last few days I've had increasing itchiness on my torso, neck and upper arms. At first I thought it was just due to heat/sweating. Then I wondered if it was a contact thing from the horrible hospital gowns. Whatever it is, I apparently clawed the heck out of my back in my sleep, so they brought me a new topical to help with the itching. It has camphor and menthol and does not smell great, but it seems to help somewhat. With my platelets as low as they are, I shouldn't be clawing stripes in my own body. After I was wearing my own clothes for 5 hours, I noticed that I wasn't itchy, so I mentioned it to the nurse and she said she would see if they had some gowns for sensitive skin. Apparently now all laundry is washed in detergent for sensitive skin, so maybe it's just how horribly rough the hospital gowns are. At any rate, I've got a connection and hope to have some snap-shoulder regular shirts soon. Hoping it will help with the normal-feeling.

Today is the staff team change for nurses and CNAs. At Froedtert they work seven 10 hour days on, then seven off. It was nice to see familiar faces in the hall, and to think of the passage of time so obviously marked in that way. A few of last week's nurses and CNAs stopped to say goodbye yesterday and one who I had last week stopped in to say hello today. I wonder what all will be different by next Monday!

Day +5; Happy Mother's Day!

Today, despite the gray, snowy weather, was a better day.

My stomach issues seem to have stabilized and while they're not completely gone, they're a little better and that makes me happy.

I'm still pretty exhausted, but not worse than yesterday and maybe even a teeny bit better (helped by not having as bad of stomach issues, probably).

My counts continue to be low, but not precipitous. I didn't need potassium or magnesium or any blood products.

The lab tech was able to get blood (to check Tacro levels) on the first stick! My levels were on the high side, so they will decrease my dose and test again in three days (this is pretty typical).

I felt more productive overall today, participating in a Podcast club (Zoom), knitting quite a bit, walking, and doing Mother's Day dinner via Zoom with my family.

Greg also paid a visit to swap out clean vs. dirty clothes and waved to me out my window.

Cara gave me a cool cross stitch for Mother's Day and Ash drew a great Pokemon, Kangaskhan, who is a mom!

--------------

During rounds, I pressed Dr. Shaw a bit more about the mechanics of the transplant and there were a few things that just kind of clicked for me in our discussion. A few people had asked how the transplant was done right after the chemo--didn't that knock out the new bone marrow? And I knew that there was a lag, but Dr. Shaw explained it more thoroughly.

Basically, chemo attacks rapidly dividing cells. That's cancer. It's also things like the lining of the GI tract (thus the mucositis), hair follicles (why I'll lose my hair again), etc. However, it doesn't attack "normal" cells that are not rapidly dividing. And the chemo is completed (with a one day break) before the transplant, so those cells are protected anyway. But there is a lag in the blood counts because the rapidly dividing cells that MAKE the blood cells are wiped out, while the mature cells are still in the body. The drop in counts is actually a lack of new cells being made because there's no marrow to make them. This happens about a week or so after the chemo has wiped out the cell-makers. That's where I am now. My mature blood cells that were in my body when I entered the hospital are reaching the end of their life cycle and dying off. There are no replacement cells (we hope) because the chemo killed off the leukemic bone marrow and nothing is being produced. It appears to be hitting my platelets first (they're at 17K and I'll need a transfusion at 10K). My hemoglobin is also dropping (it's at 8.5 and transfusions are at 7.0). The few remaining WBC and neutrophils are hanging on, but not at a level that's very protective. However, WBCs come back quicker, so that will be the first level we expect to see rising when my new bone marrow takes hold.

Dr. Shaw also explained that the reason that bone marrow is usually slower to make the full graft and get blood cell production up higher is not a difference in the cells per se, but a difference in the VOLUME of the transplant. If I were getting peripheral blood, they could theoretically keep cycling the blood through a machine and keep pulling out stem cells while the donors body would keep making more (they come out of all the marrow in the body). But because this came from marrow directly, they are limited by the volume (they don't drain from all the bones--I think only the hips). Fewer cells mean that they have to settle in, make more stem cells, and also do the work of making new blood cells. So to get to a point where there's enough new blood cells to have normal counts will necessarily take longer.

At any rate, all of this made sense, but it helped me to talk through the entire process with Dr. Shaw. I like to be able to visualize what is happening in my body and this made it a more smooth process instead of the disjointed bits I was previously picturing. In order to build more stem cells as quickly as possible, I need to be sure I'm providing the best building blocks possible (protein). I think I know how I'll fall asleep the rest of the time I'm in the hospital. I'm going to visualize my massive protein intake working to ensure that those new hematopoietic stem cells make themselves at home in every one of my bones! Welcome, new cells. We've waited so long for you!

Day +4

Today was mostly more of the same as yesterday. My nurse kindly said to expect this level of exhaustion and discomfort for "several days," and my face lit up, but then I clarified that I'd gotten marrow and not peripheral cells, and she said, "oh, it'll probably be closer to a few weeks." And I knew that, but boy was I excited about only a few days for a bit!

My blood cells are still in the same ballpark--some counts went up a bit and some went down. Since I got another dose of the methotrexate yesterday, they're expected to keep trending down. No transfusions yet, though.

I got magnesium via IV again today, but so far my potassium is holding at normal levels.

My diet has switched to more bland foods, but so far I've been able to keep eating solid foods. I am just dreading the inevitable switch to liquid nutrition. I did try a protein shake with dinner today and it wasn't terrible, so maybe my dread is misplaced.

I was having a tough time because the exhaustion (and stomach issues) made it so I felt that I was not able to get very many laps toward the Marrow-thon. But my nurses (and the PTs) assured me that even a few laps make a world of difference in recovery and energy level, so I did a five lap walk. Then when I entered it on my form, I did some math and realized I only needed four more laps to hit the full Marrow-thon count. So after a nap, I did the last four laps. :)

I'm kind of digging my hair. Too bad it'll be gone again in about a week.

When I was talking to Dr. Shaw this morning about the annoyances I'm experiencing, she mentioned all sorts of things (mostly meds) that they can try to make me more comfortable. I know that all meds bring side effects (some worse than others), and it just seems that, unless symptoms are preventing me from eating, sleeping, etc. that I'd rather minimize adding more layers to my treatment. (I think that when I mention things, my providers try to make things better, so I'm not blaming them. But everyone has different levels of comfort.) So I told her that it wasn't so much that I was asking for something to be done, but I wanted to make sure that my "complaints" were not jeopardizing my care and that if something could be prevented by treating it early, that's why I mentioned it. She reassured me that all the things I've experienced so far are very much on track, expected and normal. And I said I would love to be a boring, normal patient for the duration of this. She said the nicest thing. She said that medical providers love boring patients; an interesting patient isn't "good." But then she said, "you are a very interesting person, but thus far you have not been an interesting patient." I am going to do my best to be the most boring patient for the rest of my stay--and beyond!

Day +3

Today was a generally "meh" kind of day.

My counts actually went up a tiny bit, but since they are already so low, they are within the margin of error, so not real increases. So I'm tired from that.

I'm also starting to get some of the side effects predicted--namely I think the beginnings of mucositis. It's not terrible--really just more annoying than anything, and while I don't hurt, I just don't feel "right."

The combination of feeing not-quite-right and being very tired made for a long day.

But I have now been here for nine days. I received the second (of 4) methotrexate administrations, and I keep checking off boxes. On my walking laps today, I saw at least two new patients were admitted and I have a neighbor now. I'm recognizing the nurses and CNAs from the entire floor and not just the ones assigned to me. I'm not bored, as I packed enough knitting, have plenty of podcasts to listen to, and spend lots of time scrolling through social media. I feel very useless, but I also feel like my brain is pretty foggy and I'm not sure I could be useful at all if I even had something to be useful about!

I'm still walking (although slower, and slightly fewer laps), biking (shorter times, as my legs get tired), and eating ok (although my appetite  has dropped somewhat). All of the staff assures me that I am strong and doing great and that I am quite "normal" in what I'm experiencing. I never thought I'd be so happy to be normal!

The view from my bike

Day +2

It is amazing what difference a little sleep makes!

Last night I probably got close to eight hours of sleep. I had a little trouble falling asleep as I had a nagging headache that was distracting. I finally asked if I could take Tylenol (which I seldom do), but apparently with little exception you're not allowed Tylenol for the 100 days post-transplant. Right now it's because my liver is already so overworked with processing the myeloablative chemo and other drugs that we don't want to add more. But as I make it through the hardest immunocompromised 100 days, it's important to know as soon as possible if I have any symptoms of infection and Tylenol could mask those symptoms. So I can use cold or heat, or gentle massage, and I can use aromatherapy. I grabbed a roller of "Serenity," rubbed the base of my neck, and I was able to sleep. When I woke up, the headache was gone, so that's something. :)

My counts are still dropping, as expected, so even after a bunch of sleep, I was still kind of tired today. My magnesium and potassium levels were within range so I didn't need any IV supplementation of those.

I questioned some more on the "longer recovery time" tied to bone marrow vs. peripheral transplant and was told that everyone is different, but I should expect counts to begin to rise sometime between 14-21 days. At that point, I would still need all else to be good plus the counts to continue rising for two or more days before considering discharge.

I talked to Dr. Shaw about my headache, the itchy ears, and my burning hands. She said that if the essential oils and massage didn't work for my headache, I could try ativan to relax, a low dose of pain killer like Oxy, or at this stage a Tylenol if I was unable to rest otherwise. She thinks that the itchy ears are the beginnings of mucositis, which is actually impacting my eustachian tubes, but I'm feeling it in my ears. And she said that it could definitely be the IV tacro that is causing the increased neuropathy in my hands. She didn't want to switch me to oral tacro yet because if/when the mucositis hits, it'll probably be very difficult to swallow oral meds and since tacro levels have to be closely monitored, switching back and forth between IV and oral meds run the risk of messing up the dosage, which would be worse. She did reassure me that this is not a permanent effect and when I do switch to the oral tacro, it should go away. I can put up with it as a temporary annoyance, but it's really strange how sensitive my fingers and toes now are to temperature. I scratched my stomach and the heat from my body core made my hands feel like they were on fire!

Today was a every-4-days IV cap change, so that meant I was allowed some time un-tethered to the IV pole and wearing my own clothing between my morning and evening tacro infusions. I was amazed at how good it felt to just walk and not deal with the other things. I did 30 laps today, bringing my total to 185 (210 needed for the marrow-thon).

My own clothes!

I also spent some time with the PT in the gym, working on strength. It was nice to go somewhere "different"!

I still have a good appetite and food is tasting good. I was looking back through notes I'd taken and I had written down that the mucositis and nausea "might appear around days +3 or +4" and that's tomorrow. I have to remember that if and when they come, they, too, are temporary. Before I know it, I'll be home and all this hospital stay stuff will only be a memory. I like to be prepared for the future, but sometimes I think the sense of dread can be worse than the actual thing. :)

Day +1

I woke up today feeling pretty proud of myself that I'd been here in the hospital for a week and it didn't seem that bad.  Only a few minutes later, though, I realized that I was at the very beginning of the plus days (post-transplant) and that I have a long way ahead of me. Still, I am on the positive side!

Unfortunately I didn't get the good night's sleep I'd hoped for last night. Yesterday was my last day of steroids, so I was up until they drew labs at midnight. I planned to then sleep well, but something was up with my infusion pump and it kept alarming about every 45 minutes all morning. So I'd just fall asleep and would be woken up and have to wait for my nurse to shake the bubbles out of my line. Then I'd fall asleep and it would all happen again.

After a week of my blood counts doing "well," the chemo has started to work (hooray!), and my counts are dropping. This is expected and the timing is correct. Chemo kills fast-growing cells, but the impact isn't immediate, so those 5 days of chemo stopped things and now the counts show it. It'll take (best guess) at least fourteen days before my new marrow starts producing and my counts begin their climb back up. White blood cells (including neutrophils) are the first to rebound, followed by platelets and then red blood cells. I can get platelet and RBC transfusions (in hospital and as an outpatient), but not WBC transfusions, so there's no breaking me out until I am no longer neutropenic.

Dr. Shaw (the hematologist/oncologist whose week it is to round now) talked to me a bit more about what it means that my donation was marrow and not peripheral stem cells. Because peripheral stem cells are further differentiated, they will usually graft into the new host more quickly and get to work producing the new cells. This usually begins around day 11. After a few days of the WBCs continuing to increase and to get above neutropenic levels (ANC > 1.0), going home becomes a possibility. But with me getting marrow, the soonest I could expect any signs of increasing blood cell production is about day 14--and possibly not for weeks later. Dr. Shaw said it's a good trade-off, however. Using marrow instead of peripheral stem cells often decreases the intensity of GVHD, and given that my donor has some characteristics that might indicate more severe GVHD (not related, female, not perfect match on minor HLAs, etc.), it's worth putting in more at the start. So I will try to be patient!

My counts, from days -6 (hospital admission) to +1 (today):

WBC (normal 3.9-11.2): 1.3, 1.8, 1.6, 1.9, 1.9, 1.3, 0.8, 0.5
ANC (normal 1.9-7.8 Neutropenic if <1.0): 0.31, 0.40, 1.10, 1.57, 1.67 (artificial), 1.26, 0.75, 0.47
HGB (normal 11.3-15.1; transfusion at 7.0): 10.7, 9.5, 9.2, 9.0, 9.2, 9.4, 9.6, 8.2
PLT (normal 165-366; transfusion at 10): 82, 76, 59, 57, 53, 50, 40, 28

In addition my magnesium dropped to 1.7, so I was supplemented via IV this morning.

Other medical activities included a peripheral poke to check Tacro levels (need to 5-10; mine were 7) and my first of four methotrexate pushes (anti-rejection). I'm done with taking oral Keppra (anti-seizure), and have added oral fluconazole back (anti-fungal).

My appetite was good today and I ate well, napped some, walked and biked, and had a pretty low key day in general. I have some small issues that may or may not be due to any of the meds or transplant, including a slightly different neuropathy where my fingers and toes feel a little like when you slice jalapeños and your fingers burn a little. It's not constant, though. I have that nagging headache that I call a chemo headache which is more like an infusion headache, I think, due to all the fluids pumped into me. My drop in hemoglobin means I feel more tired and walking ten laps isn't as easy as it was the first few days. I also have to take the IV pole with me on walks and that makes it harder and clunkier (and my Apple Watch doesn't count the steps!). But all in all, I'm feeling pretty good and glad that I'm not in pain at this point. I'll try to continue to update each day, but it's my hope that the days won't be all that unique going forward, so I might not blog as much.