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.

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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)

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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.

Why you should get vaccinated--for those who cannot.

One more round of chemo down. That's my fourth of any chemos for AML and my third of Vidaza.

I haven't (yet) needed transfusions, as my counts, though I'm technically in nadir, have held okay:

White blood cells: 1.8 Thursday, 2.4 today
Absolute neutrophils: 0.97, 1.3 (able to grocery shop again)
Hemoglobin: 11.4 (wow-that's "normal"), 10.7
Platelets: 50K, 33K (trending downward)

It's interesting that some of the counts are going up, while others down during this period of nadir.

I saw the dentist to prepare for transplant and (unfortunately) I have two cavities that need to be repaired beforehand. I guess you're very limited in dental work (unless an emergency) for a year after a transplant, due to the increased chance of infection. Here's hoping my counts go up before my appointment on April 3rd!

I have started reading more about life after transplant, as it will probably happen in 5-7 weeks from now. The exact timing depends on the donor's availability as well as room in the transplant unit at Froedtert. I'm also trying not to be freaked out by much of it. There's lots on Graft vs. Host Disease (GVHD), which is pretty inevitable--and can range from mild to fatal. If you don't want to read the whole link, here's some highlights:

• The donated stem cells also include T-cells from the donor. T-cells are a type of white blood cell that target things that can make you sick. 
• Getting T-cells from a donor provide a benefit in that the donor's T-cells should recognize any remaining cancer cells as foreign, and target them.
• But a donor's T-cells may also target the host's "normal" cells, which can cause issues ranging from a skin rash to GI upset, vision problems, and even death.

Acute GVHD occurs within the first 100 days after transplant, so this is a particularly vulnerable period. I will be monitored very closely during that time. (Depending on when the transplant actually occurs, that will be until sometime in August, I believe... Missing pretty much all the summer, since among other things, I can't be in the sun while on the anti-GVHD meds.) I will likely need numerous transfusions. I'll be bugging everyone to donate blood, and my colleagues at the North Shore Health Department set up a blood drive for Friday, June 5 from 10-3 in Brown Deer. To sign up as a donor please contact Kala at khardy@nshealthdept.org or 414-371-2985.

I asked about things I can do to prepare for the hospitalization and coming home after. I ordered prescription sunglasses and think I might get a few pairs of sun sleeves, so I can still wear short sleeves and shorts when I get home, but can cover my exposed skin when I go outside. I also learned that when you're in the hospital, they want to minimize disconnecting the IV, so you either have to wear hospital gowns or have shirts that come undone at the sleeve. The nurse mentioned that you can order shirts like that on Etsy, but I think I can make some of my own, using snap tape and the millions of t-shirts that I never wear (of course we just brought a bunch to Goodwill yesterday). Something else to work on while I'm stuck home.

Perhaps the scariest thing that I learned is about vaccines. Because my immune system will be completely knocked out by the transplant, I will essentially be like a newborn baby in terms of immunity--but without the passive immunity provided by breastmilk! I will need to get all my immunizations over again--and I cannot even begin to get until SIX MONTHS after the transplant. Perhaps the most frightening is that I can't receive the two live virus vaccines (MMR & Varicella) for TWO YEARS after transplant. I can only rely on herd immunity--and with recent outbreaks of measles as near as the Twin Cities, that really scares me. 

I could go on and on about the importance of vaccination (I am a public health professional, after all),  and I will say that I was once a delayed vaccinator (before I went to grad school in immunology). However, once I learned about the very real threat to those who could not be vaccinated, weighed against the minuscule risk of vaccines, I realized that it was unfair to put others at risk. 

Additionally, one of the most interesting, compelling, and recent discoveries is that the MMR vaccine is more beneficial to the immune system than getting measles. This is because measles infection actually erases immunological memory, making a person more vulnerable to diseases they'd previously been immune to.  

And so I will be asking friends to stay away if they and/or their children are not vaccinated. If I make it through all this chemo and a transplant, I'm not going to risk my life to a vaccine preventable disease. That risk is just too great.