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. :)

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 -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. :)

Less than a week...EEK!

By this time next week, I will (barring anything unforeseen; knock hard on wood) be in the hospital and have started chemo. Eek!

This post will have LOTS of medical info (for me to refer back to) and will include a tentative timeline. Not exciting reading, but a plan, and having a plan puts me in my comfort zone.

First off, all of my pre-transplant tests are good. That includes an echocardiogram, EKG, CT scans of my chest and head, a pulmonary function test, and tons of blood tests including CBC, blood chemistry, communicable diseases, immunity, and a pregnancy test. My white blood cell counts continue to drop, while my hemoglobin and platelets are increasing, though nothing is in the normal range right now. I've had a social work consult, a psychological consult, a pharmacy consult and signed my name to at least a dozen pieces of paper indicating that I understand the risks of this procedure and the medications I'll be given and that I give permission for storage and research on any of my tissues that are not used for my treatment and would otherwise be discarded. All that remains is a COVID-19 test, which will not be done until the morning of admission.

I have learned that my donor is a 22 year old woman from somewhere in the US, and that she donated earlier this week and her stem cells are currently cryogenically preserved at Froedtert, waiting for my body to be ready to receive them. (That gives me chills every time I think about it.) I had to sign an extra paper because my donor received a tattoo in the 12 months prior to her donation and the FDA requires that disclosure (although she's been tested for known blood borne diseases and there's really no concern from my medical team). Her blood type is O+, which means that when the transplant takes, I will also be O+. (Makes sense, but I hadn't thought about that!) I will continue to receive A+ until I convert at about 1 month. Then when there are signs of conversion, I get O- until I'm completely O+. (So donors, keep that in mind! LOL)

Dr. Hamadani explained that my myeloablative chemo is "intense" but that it's the best choice for my situation, and given that I am "very fit."

From the information provided by my transplant coordinator, the "schedule" and what I should expect will look something like this--although, as always, everyone responds somewhat differently:

Day -6 (negative six; 4/29/20): if COVID-19 test is negative, I'll receive a shiny new PICC line, be admitted to the hospital, and have my first chemo (Fludarabine).

Day -5 (4/30) through Day -2 (5/3): Two chemos--Fludarabine and Busulfan; Busulfan causes mouth sores, a sore throat, and GI distress. I'll be sucking on ice and/or popsicles for hours each day during and for half an hour after each Busulfan infusion. I'll likely lose my appetite again, but not feel horrible.

Day -1 (5/4): Start anti-rejection drug tacrolimus; this drug requires frequent blood tests and titration of doses. It will be IV while I'm in the hospital, then transitioning to oral.

Day 0 (5/5): Transplant Day--happy re-birthday to me! 

Days 1 to 7: additional anti-rejection med--Methotrexate--on days 1, 3, 6 and again on 11; This should be my easiest week, as the chemo impact is delayed. I'm supposed to hang out, exercise, and rest up. May start the decline and need transfusions by the end of the week

Days 8 to 14: This is projected to be the roughest part. My own WBC will go down to nothing and it will take until about the end of the week for the donor's immune system to start producing and begin the upward climb. Because my body will be sorting out the two immune system thing, I'll spike fevers--which is a good thing. Unfortunately, we don't know for sure that any fever is just the immune system change-over, so staff will have to rule out another source of infection. So it'll likely be a week of pokes for blood draws, X-rays, CT scans, vitals checks, etc. I'm told to expect extreme fatigue and a lot of blood transfusions.

Days 15-21+: This will be the gradual recovery and hopefully my new immune system will build to allow me to go home sometime after day 21 (5/26). I will still need transfusions--but hopefully fewer of them. Day 21 is the earliest I will be able to head home. I know others who have had transplants that have been hospitalized much longer--even over 100 days. 

When I'm home, I'll have to go in twice a week to see Dr. Hamadani and have labs drawn. I will likely still need some transfusions, but hopefully less frequently.

Med-wise, I'll be on:

Tacrolimus (anti-rejection) for at least 6 months

Acyclovir (anti-viral) probably for life

Levofloxacin (antibiotic) until my counts rebound

Fluconazole (anti-fungal) or possibly back on voriconazole (anti-fungal) for 3-6 months, depending on counts

Bactrim (antibiotic) starting on day 30 for at least 6 months (protects agains a common opportunistic pneumonia)

Ursodiol to protect my liver from all the stuff given to me surrounding the transplant

Venetoclax (chemo) possibly even after the transplant since I still had blasts present at transplant

I'll need to avoid the sun while on most of those meds, so I may be enjoying this summer from my kitchen patio door!

The first 100 days post-transplant is especially restrictive. This is the window in which the most critical side effects (including infections and acute graft vs. host disease) will likely occur, and after which the new stem cells are most likely engrafted and making new blood cells. I will not be able to go out to eat, will be on all those meds above

I cannot travel for a year (although with COVID-19 I probably wouldn't anyway), and I will need to continue living pretty much like I have been for the last 5 months--and how you all have been since COVID-19--for that year. If my counts rebound and I'm off the immunosuppressants and anti-rejections, I can start to be re-vaccinated after 6 months, but some won't be possible until a year.

It's a lot. I spent 21 days in a row at St. Luke's and I had several visitors every day. Visitors are not allowed in the hospital now because of COVID-19. I am happy that I've been able to connect with so many people via Zoom, and I will continue to do that through my stay. I can't even think about how hard it will be to not be able to be with Greg at all. Obviously I'll be face timing and texting and Zooming with him every day. He will be able to pick up and drop off things for me--leaving them with a nurse from my unit. But that's it. Which is bizarre. I need to keep my eyes on the prize, and the only way to ever possibly resume a normal life at all is to make it through the next month, then 100 days, then 6 months, then year. I’ve been waiting for this chance for almost five months. It's time to do this.

Prepping for the next steps--whatever they are

I've been getting by, day by day. My "quarantine" has now lasted for 138 days, with no end in sight. My blood counts have dropped, then gone up a bit, then down some more, but I have still managed to avoid any transfusions since January second. Always looking for silver linings!

I feel for my family and friends, stuck home (or at work) and trying to navigate everything differently with the appearance of COVID-19. For me, in many ways it's made my neutropenic quarantine easier. Greg, Ash & I aren't leaving the house except for doctor appointments (and socially-isolated exercise), so that reduces my fears of catching almost everything.  My doctor appointments are still stressful. Yesterday I spent an hour in a tiny room having an echocardiogram. The tech's face and mine were two feet apart almost that whole time. We both had masks on, but it also involved an awful lot of deep breathing in and out for the images. Ugh...

As far as what my next steps are, I'm not really sure. Since I fell out of remission, I will NOT be going to transplant this month, as was the original plan. I will be starting a clinical trial on April 20th. My appointments have populated my Froedtert app (there are currently THIRTY appointments on it).

The first big chunk of appointments include labs, infusions, appointments, and follow-up labs later that day for days 1-5 of the new chemo regimen. I get a bonus pre-clinical trial bone marrow biopsy this Monday (that will be my sixth). Then from April 20-24, I start my day at 7:40 every morning with labs, followed by chemo. I think I may get to go home for a few hours but then have to return at 3:30 every day for more labs because this new regimen is known to cause liver damage and they need to know right away if that's happening. (Hopefully my life-long minimal alcohol consumption will give me a leg up there!) After those five days, I have "chemo only" on Saturday and Sunday, and then we wait until May 1 to have another bone marrow biopsy, and get the results, which will show whether the new regimen put me back into remission or not.

However, I have to say that I feel comforted that, other than the delay, other plans for my transplant are still moving forward and re-scheduled. I am telling myself that if I were a lost cause, they'd tell me, "oh, we'll wait to re-schedule those." All of those appointments have been scheduled and if, by some miracle I achieve remission again after one round of the new regimen, and all other tests clear me, I'll be admitted to the hospital for ablative chemo on May 13, with a new transplant date of May 19.

After having a few extra tubes of blood drawn on Monday for the clinical trial, I was surprised that my Thursday lab had thirteen tubes. EEK! But the extra tubes were for my pre-transplant work-up! Doesn't this kind of look like a bouquet?

I have already had a meeting (via phone) with the social workers--who are both AWESOME! Seriously, they have been wonderful with providing resources on grants for cancer patients, resources on things like discussions to have with your medical power of attorney, and support in applying for social security disability. All the things that I was searching for when I was first diagnosed in November were provided to me electronically. If only I'd known back then, I wouldn't have had to struggle so much with figuring out all the financials.

Which brings me to my other down side of the week. As of yesterday, I am completely unemployed. Though I knew it was coming, I didn't realize just how hard writing the words, "I resign from my role as Public Health Manager, effective April 9, 2020" would be. I'm still struggling with the loss of my identity as a public health professional, although I've not really WORKED as one since late November. It just hit me harder than I'd hoped. I plan to keep up with as much as I can, which right now is all COVID-19, all the time. :)

And it's a third of the way through #30daysofbiking, and despite social distancing restrictions, I've biked outside every day this month so far. Greg's been a champ, accompanying me on almost every ride. I need to keep my heart and muscles strong for whatever is ahead.

Tears can be a good thing, too.

This will be a quick post, but I wanted to thank all of you who reached out after my post on Thursday.

I have to say that Thursday was really hard. It felt like a sucker punch to my gut. And if I'm being honest, most of Friday was really hard, too. I read all of your comments on my Facebook post, my blog post, your texts and your messages... But I just didn't have it in me to respond--not even to "like" them on Facebook. I had to just not think about things for awhile. And I had to finally release and cry.

I am not a big crier. But I need to remember that sometimes a good cry is not only okay, but perhaps necessary. I let myself cry Thursday night and much of Friday whenever I felt any emotions. I didn't hold back at all. (Poor Greg...) And slowly the "poor me" and "it's so unfair" tears turned to tears of gratitude. And by Friday night, when I watched Pat McCurdy's Shelter In Place Concert #3 on Facebook Live, I even laughed some.

I am so unbelievably fortunate in so many ways--not just through this awful second cancer diagnosis, but through the whole COVID-19 quarantine thing. I happen to love spending time with my husband, and am pretty lucky to have him home all the time now. He's able to work from home. My long term disability from work kicked in before this all started, so we're not at financial risk and can afford the little extra to order groceries and not have to shop in the store. And I have been able to FaceTime or Zoom or even talk on the phone with so many people now that we're all in the same boat.

I've been out (at least a little) every day on the bike for #30days of biking. Even though it's hard to breathe through a face mask while exercising, the fresh air and occasional sunshine helps!

And the coolest thing happened yesterday afternoon. My neighbor (and friend) Tracy had her artist friend JBird make the most amazing chalk drawing on my front sidewalk. Better yet, I could sit in my recliner in the sun and watch him create. Is this not the most beautiful thing?

(And if you need another positive in today's world, I just read an article that says that Wisconsin's "Safer At Home" orders are working to flatten the curve.)

Be well, everyone. I love you.

Surprise Perks (another COVID-19 post)

As many of you saw on Facebook, my platelets appear to be rebounding (WOO HOO!) and I didn't need a platelet transfusion today. Unfortunately my other counts are still dropping. C'mon neutrophils!!!

Platelets: 33K (21K on Monday; need to be 50K to bike again)
Hemoglobin: 10.8 (11.0 on Monday)
White blood cells: 0.8 (1.4 on Monday), and absolute neutrophils not back yet, but certainly low.

I said something to my nurse about being happy that I didn't need platelets since I knew that blood donations had dropped off and she said that she and so many of her colleagues had heard the call and donated that it wasn't as dire of a situation as it was two days ago. Thank you, health care workers, for going above and beyond in so many ways. You are truly the super heroes in all this. (As are the public health workers, first responders, grocery store employees, truck drivers and all of you who are in the "essential workforce" group.) You are awesome!

And to the rest of you who weren't able to donate blood this week--please consider doing it next week. Or the week after. Let's keep it going for however long it takes.

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

I am certainly as put out over this worldwide pandemic as the rest of you, but I was thinking about some of the surprise benefits that have come with "everyone" being home.

• Lots of my friends who'd left Facebook have returned! (I'd missed seeing your updates and hearing your voices in your posts)
• There are more posts in general on Facebook, and since that's where I've gotten the majority of my social interaction for the last almost-four months, that's cool.
• I have been introduced to Zoom and I am loving my Zoom coffees!

• I know other teachers are doing this, but I am particularly fond of my dear K-4 teaching friend Meredith's YouTube lessons including an awesome breathing/stress relieving one. 
• There are a bunch of online meditation, yoga, and other classes you can take. Most are free, or supported by donations. Since they are lead by people currently not able to work, consider making a donation if you participate. (I'll update this post when I get some links as I know several are in the works.)
• A really fun COVID-19 Playlist on Spotify.
• Free museum, zoo, and national park webcams, to name a few. Google for your faves.
• Streaming concerts!  I'm looking forward to Paul Simon, Edie Brickell, Willie Nelson, Nathaniel Rateliff and others tonight at 6:00 CST, and to Pat McCurdy (local amazingly funny musician) tomorrow night at 8:00 CST.

Stay safe, everyone--and stay home!

Eyes on the Prize (more COVID-19)

In the four days since my last post, even more has happened in the world around COVID 19. It's scary, and I find myself (unhappily) thinking more and more about how this potentially impacts me. I don't like having ME be my primary focus. It leaves me with an icky feeling that is a combination of heart racing and knotted stomach.

But I go on, day by day, as we all are.

My blood counts continue to decrease, but I've avoided needing blood products so far (we'll see what Thursday brings). I got a little freaked out when Froedtert called me today to see if I could go to a "local clinic" for my Thursday lab draw instead of the main clinic to minimize exposure to people. Unfortunately, the satellite clinics can't draw from PICC lines and I need my dressing changed, so I have to go to the main site. They told me to wait for results in my car instead of the waiting room. Eek. Scary times.

There is intense need for blood donation all over the world as blood drives have been canceled and people are not showing up for appointments. Apparently a LOT of blood donations are made at High School and college locations--all of which have closed. Please, if you are able, donate blood! Read online about why it's safe, even now. If you're in the midwest, please consider Versiti--all blood donated there stays local. If you donate at the Milwaukee branch, I might even be the recipient of your donation--especially if it's platelets!  Go online and do the pre-registration to minimize the time you wait. 

I was able to speak with the transplant coordinator and learn more about what my next 6 weeks will (hopefully) look like. And I learned more about why my transplant date was moved back a week (so far).

The primary donor they'd initially identified was international. With all the travel restrictions, there was sufficient concern that it might not work out to have cells from an international donor, so they switched to my back-up donor, who is domestic. In addition, normally the recipient (me) would receive a week of intense chemo to prepare for the transplant, and the donor's cells would arrive "fresh." But (again) with the concerns about travel restrictions and all sorts of uncertainties, the plan is now to harvest the donor cells before I start intensive chemo so that they will be cryogenically preserved on site until I am ready for them. Unfortunately this adds another layer of issues, as many people react to the cryogenic preservative. Ugh.

So if all goes as planned (oh, send those vibes!), I have a calendar full of fun stuff.

March 25: Bone marrow biopsy
March 26-April 1: Vidaza (chemo) daily
April 2: Doctor appointment and platelet infusion to prepare for dental work
April 3: Lots of dental work
April 7: Social work evaluation, transplant education, pulmonary function test, EKG and Echocardiogram, and chest and sinus CT Scans
April 13: Labs, psychologist evaluation, transplant doctor appointment, transplant pharmacy consult
April 23 (Day -6): Labs, PICC replacement, admission to BMT unit in hospital, begin chemo (Fludarabine)
April 24-27 (Days -5 to -2): Double chemo (Fludarabine and Busulfan) daily
April 28 (Day -1): Start anti-rejection med (Tacrolimus)
April 29 (Day 0): Receive transplant!!!
April 30, May 2, May 5 & May 10: Anti-rejection med (Methotrexate)
Week of May 17: possible discharge

Whew! LOTS of stuff. And I need to just keep focusing on the end game. I have to keep myself isolated and healthy to be able to make it to transplant, and to be the strongest I can be for transplant. Despite my fears, I have to keep moving forward. Hopefully it'll all work out.

What does COVID-19 mean for me?

Yesterday was Day 15 and an appointment with Dr. Atallah.

My labs are holding ok:
White blood cells: 2.3 (from 2.4 on Monday)
Absolute neutrophils: 1.3 (same as Monday)
Hemoglobin: 10.4 (down from 10.7)
Platelets: 25K (down from 33K, and because they're so close to 20K, I need to go in for labs tomorrow)

------
I have started and re-started a post on SARS-CoV-2/COVID-19 so many times, but before I could post, information and recommendations and seemingly everything that's known has changed!

I won't re-write everything that someone else has already written, although I'll share a few general thoughts (current as of today) and a few great (IMO) links for further reading.

Why is this such a big deal when the flu, suicide, TB, gun violence, etc. all kill more people annually?

• Unlike the flu or a cold, this is a novel coronavirus which means that it is new, and therefore no one has antibodies against it (except the 69,623 people worldwide who have had it since December 2019 and recovered as of today). So when one person is sick, pretty much everyone around them has the potential to be infected. Did you hear about the super spreader in New York infecting at least 28 others?
• Read: COVID-19 is not the flu
• We are still not sure how long before a person becomes symptomatic that they are contagious. There are cases that have appeared without known contact with a symptomatic person.
• Read: CDC's How COVID-19 Spreads
• While it is true that the majority of cases will be minor, it does NOT make sense for anyone to try to get sick (think Chickenpox parties). Besides the fact that not all cases are minor, the longer it takes for the general population to be infected, the more time there is for hospitals to treat and release (not be overwhelmed), for faster tests to be developed, for a vaccine to be developed and produced, and overall to save more lives.
• Read: Flatten The Curve
• Although the cancellations of sporting events, concerts, requirements to work from home, conversion of school to online formats, and everything else is a complete pain for pretty much everyone right now, I'm asking you to trust in public health. Hey--we're used to only being acknowledged when we don't do our job right!
• Fun read/printout: Work At Home Bingo Card

Now on to how the COVID-19 pandemic may impact me personally (since this is, after all, my blog about cancer):

I started off, in January, convinced that "the novel coronavirus" was like many other coronaviruses and that influenza was still a much bigger concern. That's definitely not the case now. In the last week or so, I've spent a lot of time thinking (selfishly) how it might impact me, and more specifically my transplant.

1. I have a weakened immune system. Catching COVID-19 could well prove fatal. I am more likely to catch it if it keeps spreading because people selfishly think it's not a big deal and continue to go out in large groups in public and spread it.
2. My donor is international. What if travel is not allowed between the country they live in and the US? Would I even be able to get the stem cells?
3. My donor is young--early 20's. What if they (or their parents) decide that, in these uncertain times, it is too risky to donate stem cells?
4. There will likely be a surge of patients requiring hospitalization. What if hospitals are overrun with COVID-19 patients and there isn't even a room available for me for the transplant?
5. Medical providers will likely be stretched by patient care, their own possible illness, being needed to take care of children who are no longer in school or daycare. What if my medical team cannot care for me while I'm in the hospital?
6. The US gets medical supplies from many other countries, and already many things are becoming scarce. What if I'm in the hospital, but supplies are no longer available, including PPE (important when working with someone immunocompromised) or IV fluids?
7. I was told that the sooner I get to transplant (after achieving remission), the better. What if my treatment gets pushed back due to all the other priorities, and in that time I fall out of remission and am no longer eligible for a transplant?

At my doctor appointment yesterday I was reassured of some of my fears, but unfortunately not all of them.

I do have to be extra careful to not get sick. But more importantly, my donor is in Europe. I learned yesterday that my transplant has been pushed back by a week. I hope this is the only delay. Unfortunately, pushing it back means that I will require another round of Vidaza. I am trying really hard not to feel sorry for myself.

Round four of Vidaza will be March 26-April 1 (I'll add entries to the google driving spreadsheet when I have exact times).
I'll have a bone marrow biopsy sometime in April.
If nothing else changes, I will be admitted to the hospital for pre-transplant chemo on April 23.
My transplant day will be April 29.

I did learn that they will not start the pre-transplant chemo until they have the stem cells "in the refrigerator" at the hospital, so that at least means that I won't end up with no bone marrow and none coming! I just hope that this schedule is not put off any further. And I need my body to be awesome about keeping me in remission. I am hopeful.

I've been trying really hard to find a silver lining in this delay. I did find one. Last year I signed up for a really cool project, 30 Days of Biking. Essentially you commit to bike every day in April--indoors, outdoors; long, short; fast, slow. I didn't think I'd be able to participate this year, but I'm going to try to ride either 22 Days of Biking or 23 Days of Biking (depending on admission time). I invite any of you to join me in this project--and I will ask for volunteers to ride the remaining days in April FOR me. Kind of like surrogate bikers. Or maybe Handmaid bikers! Will you be a Handmaid biker for me?
If you want to sign up to bike all 30 days yourself, go to: https://30daysofbiking.com

OK, one last thing. I just want to say that since I went to grad school and earned a PhD in Public Health by researching hematopoietic stem cells, I will be SO UNBELIEVABLY PISSED if a pandemic kills me while I'm weakened by my own defective hematopoietic stem cells. I am not a fan of irony. It's time for Buffy the Vampire Slayer to attack COVID-19.