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.

Day Zero; Welcome to my new hematopoietic stem cells!

Today's word is grateful.

I start with the undying gratefulness I send toward the as-now unknown-to-me 22 year old woman who selflessly donated her own bone marrow so that a stranger (me) would have a chance at continuing to live, to bike, to return to work, to hug her friends and to meet her eventual grandchildren. I sent out the most positive feelings I could, across the land, to wherever she lies. I learned that she chose to donate bone marrow instead of peripheral stem cells (donor's choice), and I don't know for a fact, but I assume that she was somewhat frightened and thought it would be easier to be asleep for her donation. What an amazing gift, especially in this uncertain time of COVID-19. I hope she is recovered and feels good about the magic she set into place. I am so unbelievably grateful, and I hope that I get to meet her some day and thank her in person.

I am grateful to my medical team who worked these last five months to get me into remission (a daunting task) and to keep me safe and healthy and to bring me to this transplant day, which I wasn't sure would even ever happen. I count everyone in this group, from Dr. Shah at Columbia St. Mary's, the team at Aurora St. Luke's, and my new team here at Froedtert.

My nurse, Stephanie, connecting everything before the transfusion.
I had a liter of saline in preparation and will continue to receive IV saline
for 24 hours post-transfusion

The donated bone marrow

The cells as they make their way into my PICC line and their new home!

And I am so grateful for my support network that continuously blows me away. In a pre-COVID-19 world, I would have had company in my hospital room for my transplant. But instead, I had close family and a few friends pop into ZOOM and keep me company on and off for over 3 hours as I was receiving the transplant and monitored. I had to be hooked up and vitals taken every 15 minutes so it would have been a long day to just sit alone. Y'all kept me wonderfully entertained! Here's a few screen shots:

Cara gathered requests and put together a Spotify playlist that started with Taylor Swift's "22." There may have been some dancing and my nurse said she got goosebumps.

My phone was full of texts and messages and Facebook comments all day long. My family did dinner with me via Zoom. The day truly flew by. And I think I will sleep well tonight. 

I am grateful and I promise to not take for granted any of this additional time I have been given.

Day -1

Today's word is "sisu."

Growing up in Northern Wisconsin, there was some good natured Finnish vs. Italian ribbing. My dad was a big believer in the superiority of the Finns and I grew up with the word "sisu" tossed around a lot. I recently re-stumbled upon it and thought it applied pretty well to my situation. I'm not saying I'm any more determined than anyone else facing a similar obstacle, but I think my inner sisu helps me keep going through this marathon-like slog.

Today was my "day of rest" between myeloablative chemo and transplant.

This morning my orthostatic blood pressures were "positive," which, despite the term, is actually not a good thing. It means that my BP dropped when I moved from lying down to standing. The most likely reason for this is that I'm somewhat dehydrated. I believe it, as I'd been drinking less due to the underlying nausea and the fact that I so desperately wanted to sleep through the night last night and didn't want to have to get up to pee! I made a big effort to be more aware of my liquid intake today, and my blood pressure went up (and the queasiness went down) throughout the day, so I guess it was worth the fluid forcing.

I started the anti-rejection med tacrolimus. Dr. Longo gave me a long explanation of the history of transplant meds (which was great). I'll be on tacrolimus for awhile, and it's the med that is titrated at least every 3 days to ensure that the correct levels are maintained in my body, depending on my metabolism. Unfortunately, these labs cannot be drawn from my PICC line, so I'll end up with a whole bunch of pokes for tacro labs. Ick. It is given as an IV infusion initially (over two hours), but will switch over to an oral med before I'm released.

And after tomorrow's transplant, I'll have four more chemos--the anti-rejection chemo methotrexate (I knew I wasn't done with chemo entirely--wasn't thinking about methotrexate being chemo!). Methotrexate is used as a primary chemo in some cancers, including ALL. It used to be used weekly for the first 100 days after BMTs, but research showed that four doses of metho followed by a period of cyclosporine provided as effective of protection against graft-vs-host-disease as did continued methotrexate, and with fewer side effects (including development of additional cancers). Tacrolimus has since replaced cyclosporine, again due to fewer side effects and better efficacy. I'll get the methotrexate on days +1, +3, +6 & +11, but they are just an IV push--not an infusion--so should be quick.

I realize I have mostly skimmed over graft vs. host disease (GVHD), but it's probably worth mentioning in a little greater detail now.

Essentially, you can by the name that the graft (my stem cell transplant) may compete with the host ("me") and cause disease. The way it works depends on the immune system, but specifically the T-cells, which are white blood cells that specialize in the thymus to directly attack specific invaders. (B-cells, on the other hand, don't interact directly, but produce antibodies against invaders.)

GVHD can be acute (short-lived, early) or chronic (permanent), which used to be divided, depending on whether they appear in the first 100 days post-transplant or later. But there is also thought that they occur along a continuum. The way it was explained to me by one of the nurses is that we want a little bit of GVHD, because that will keep any future leukemic recurrence in check, seeing them as "foreign." People who have some GVHD have lower relapse rates. (Remind me of that when I am complaining about GVHD side effects, please!) I'm often an all-or-nothing kind of person, so it's going to be difficult to go for that happy medium, too.

GVHD occurs when the T-cells from the donor react to antigens in the host (me) which are different. T-cells recognize antigen and then amplify T-cells to "attack" the foreign invader. Part of that attack is carried out by proteins called cytokines. (If you're following the COVID-19 hospitalizations, that cytokine storm was causing all sorts of issues in the lungs, because cytokines call in the back-ups and flood the area with things that cause inflammation, which can permanently damage tissues, like the lungs in COVID-19). I was told that all the major histocompatibility complexes match with my donor, but there is "minor incompatibility." I'm not sure how big of a deal that is, or what it will manifest as, but it's what I've been told.

Immunosuppressants such as tacrolimus and methotrexate interrupt the T-cell proliferation stage, which in turn decreases the calling of the cytokines and the associated issues caused by them. This is why the chemo leading up to this, and tomorrow's actual transplant are the more minor parts of my stay. Grafting the donor cells and dealing with GVHD and that fallout will be the bigger things. (Plus remaining in remission after donation, but I'm not going there yet!)

All this is to say that there is a plan and I understand it, and I like having a plan I understand.

Finally, today is also a day of Sisu because Dr. Longo told me about his lovely Finnish daughter-in-law. I can't help but think that's a plus--that Finnish connection. :)

Day -2

Today's word is emotional.

My last myeloablative chemos were today, and they are adding up. I'm tired and my schedule is twisted. I continue to get the Zofran and steroids for the next two days still, but hopefully I will be able to sleep a bit more without having to be woken up for infusions. I am not so naive as to say that these will be my last chemos ever (though one can hope), but I am still so happy that they are the last ones for now! And that makes me really emotional. The fallout and side effects won't hit me fully for awhile, but I don't have to be hooked up to the poison, and that brought the tears.

Greg had some things to bring in to me (the mattress topper, some picture frames, etc.) and picked up some of my dirty laundry, and when I was arranging the time to have the nurses swap things, I teared up, thinking about Greg being so close and not being able to see him. My amazing nurse said that, since my counts were decent, if I masked up, I could walk down to do the swap with him. So of course I did. I was even able to hug him. It was so worth it, even though it made me even more emotional...

I came back to the room and both of my wonderful daytime nurses helped me unpack and re-make my bed and get everything set up. My aide asked me about how long Greg and I were married, about our kids, etc. and I just let it all sob out. It felt good to not hold things in.

And then I unpacked the binder that holds all the posters that so many of you held on the parade that you gave me a week ago. Even more emotions. I am the luckiest person to be so surrounded by family and friends who make sure that I know that I am loved and cared about. How can I help but be emotional at that?

The first chunk of this elephant has been eaten.

Day -3

Today's word is sweaty.

I started the morning sweaty because I actually slept for a long time last night. Hospital beds are gross and the mattresses are plastic, thus the sweat. Greg's going to try to find an old twin mattress topper to bring in, but I definitely woke up sweaty.

Then the sun came out and the temperature was in the mid-70's! Even though I only experienced it through my window, I got terribly sweaty sitting in the sun.

And I worked up a sweat several times today--riding the bike before lunch, trying to squeeze in 10 laps before my afternoon chemo, more laps after chemo and after dinner, and doing arm exercises with resistance bands.

Sweat is good. It almost makes me feel normal!

On rounds this morning, Dr. Longo said that my results came back from the lab in Washington State and that they could increase my dose of Busulfan. I went from 192 mg (first two) to 240 mg (second two). This is good because as long as my body can take it (thus far evidenced by my liver function tests, the blood lab tests sent to Washington, and how I'm doing), we want to knock out as much of the marrow cells as possible (thus myeloablative chemo). This gives the best chance for the donor marrow to take and do what it should do. (Reward for drinking so little alcohol all my life?)

I only have one round of each chemo left now--tomorrow morning and tomorrow afternoon. I'm comfortable with my room, the floor, the menu choices for meals, and all my staff. I'm working my way through podcasts (loving Sawbones and binged the Prince 1999 tour series), knitting, and spending so much time on Facebook drooling over the beautiful outdoor bike rides, walks, kayaks and runs that you all are doing for me while I'm stuck indoors. What an amazing mood-lifter!

And for those of you who asked how to find my window since you live near Froedtert and want to bike or walk or run past, this window is in the lounge a few rooms down from me. It's on the 9th floor of CFAC in the SE corner. Just west of it is room 8, then 7, then I'm in room 6. Each room has two wide and two narrow windows. If you ride or run or walk by, text me and I'll try to look out and wave. :)

Day -4

The topic for today's blog post is medications.

Meds mess up the best laid plans.

I hadn't slept well Tuesday night (pre-admission nerves) or Wednesday night (lots of interruptions plus a new setting), so last night was gonna be my night!

Last night I ate dinner relatively early and ate everything I ordered, realizing it was probably the steroids kicking in. (No steroids on Wednesday; got them at 5 am yesterday) When I took dexamethasone during my AC chemo for breast cancer treatment, my chemo (and pre-meds) were in the afternoon, so I crashed the night of chemo and then had steroid energy the following day. I loved it! Unfortunately with getting the pre-meds at 5 am, my steroid energy hit me at about 9 pm last night. When I was still awake at midnight for vitals and labs, the nurse suggested I take some Ativan, which is prescribed for anxiety, but also helps with sleep. She did warn me that taking it that late at night might make me groggy in the morning, but I felt like I needed sleep.

So I finally fell asleep about 1 am. Vitals at 4:00. Fell back asleep, then woke up with a start at 6:20 because I hadn't gotten my pre-meds and chemo. It turns out that the Busulfan only needs to be given at 6 am the first day so that labs can be drawn and sent off in time. So today (and the next two days) I get it closer to 8:00 am. Still, I was up for the day by then, and hooked up to chemo and chewing ice chips until 11:00. And definitely groggy for much of the morning.

The Busulfan is a stronger (myeloablative) chemo that has lots of lovely side effects, including nausea, so they are giving me twice as much Zofran as I previously took (12 mg vs. 6 mg). And Zofran screws up my GI tract, so I get to take meds for that, too.

I'm (just over) halfway through the chemos. Moving right along.

Still, despite having my schedule all funky, I feel pretty good! I did 20 total laps of the unit (about 2.5 mile walk) and did 4.5 miles (intervals) on the exercise bike. I've been goaded into trying to complete FIVE marrow-thons, as the guy released yesterday apparently was the one who completed four during his stay. It's really hard to turn down a challenge. I guess I need to sleep less so I can exercise more. LOL

The 9th floor of the Center for Advanced Care is almost brand new. The rooms are all freshly painted and bright and things all work. LOL. And another cool thing about 9CFAC--it seems like half of the staff is pregnant. :) And there's this on the floor:

It makes my lactation counselor heart happy. :)