Day +70

I was hoping I'd have some amazing news of some sort by this week, but it's more of the same for the most part--maybe even a little worse.

My counts have continued to drop even though I'm over a week after completing my first round of chemo (two weeks since starting it). WBC are low enough that I'm on all the extra protective meds, hemoglobin is low enough that I needed a blood transfusion Friday (and I *feel* like I'm low on oxygen), and I've needed THREE platelet transfusions. It's not just the chemo, as the percentage of blasts in my blood have also increased (1%-8%). So this is the return of the leukemia and we need to try to knock it back into remission.

I'd mentioned the possible donor lymphocyte infusion (DLI) before, which would be a three-time "boost" of some immune cells from my donor. The hope (and what often works) is that her immune system would recognize the leukemia as foreign and would attack it. Yesterday I learned that my donor is not available to donate additional cells. They don't know why (Be The Match doesn't give a reason), but at any rate, the DLI is no longer on the table.

I will get another bone marrow biopsy on Friday to see if the first round of Decitabine did anything. I have also, since yesterday, resumed taking the oral chemo (Venetoclax). I'll do at least a cycle (month) of Venetoclax and they'll watch for a response to the chemo (counts rebounding, blasts dropping, etc.). If not, they'll do another biopsy in another month and go from there.

If there is more leukemia even after those cycles of Decitabine and Venetoclax, then we move onto something else. There is a promising clinical trial that uses an antibody against CD47 (which indirectly targets p53), which they are hoping I could get into.

To end on a slightly more positive note, I mentioned my concern yesterday that I had to have platelets three times, two days apart, each time because my count was 9K (really low). Katie said she'd draw a post-infusion lab to make sure that I wasn't developing refractory platelet issues. Basically that would be an immune response to donated platelets. Yesterday my count went up to 52K after my transfusion, so she doesn't (at this time) suspect refractory platelets. (If it were, I'd need to receive platelets much more closely matched to my blood type and HLA to decrease the chance of a reaction.)

And I know most of you saw my post on Facebook, but I will keep posting about blood (and platelet) donation whenever I hear of there being a shortage. Since I started my treatment for leukemia, I have needed 10 units of blood and 16 units of platelets. :(  I don't know when this need will go away (if ever). And I am so indebted to those of you who donate regularly, who started donating since my diagnosis, or who went from sporadic donations to regular donations. You are heroes! And I mean that completely. I literally would not be alive without you (and others like you) donating. If you donate through Versiti Blood Centers, your donation stays local. They have donation sites all over the Midwest. You can sign up online, and I've heard from many people that they are doing an awesome job of being safe in times of COVID. But if you prefer Red Cross, they're also good, and I'm sure there are local centers in other parts of the country/world. I feel like blood donation is a big karmic pool and wherever you give, it results in someone somewhere that you love benefitting, as your donation is benefitting someone somewhere that someone else loves. :)

Life-giving red blood cells

Me, with my third bag of platelets this week

Finally, I've decided to approach my leukemia mentally in a slightly different way. I was already thinking this when Cara responded to the return of my leukemia by texting me, "You are clearly a vicious badass--all of your cells, even the f'ed up ones!" So I acknowledge the badassery of my leukemic cells. They have made it through four different chemo regimens (including one called "myeloablative" which literally means obliterate all the marrow). They keep mutating and making it harder and harder to fight them. I am a strong, otherwise healthy, relatively young woman and they keep winning. So I give them kudos for being this strong. They've proven themselves and I will no longer underestimate them. And now it's time for them to take their first place medal and get the fuck out.

Day 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.

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.

Transplant update

It's been awhile since I've given an update on the transplant process.

First of all, I want to share that 96 people have signed up under my code--online or through one of the two bone marrow drives. I know that many of you signed up when I first learned about Be The Match, and before I had a code (LorisLegion), so the number of adds to the registry is likely even higher. If you (or one of your kids) signed up before my code, but because of my prodding, please let me know. I would love to have a better count of how many new registrants we've brought in. :)

The donor match process has been long. Although I was told that I shouldn't worry because given my background it was extremely likely they'd find me a good match, it seemed that everything was taking longer than I'd expected (and certainly longer than I'd hoped).

Over a month ago I heard from the Froedtert transplant coordinator that they'd identified three perfect matches in the registry and that the next step was to bring them in for additional testing. Two weeks ago I had not heard anything, so I called her. Unfortunately none of those three panned out--one was unreachable (had moved, maybe?) and the other two either had test results that didn't make them a good match, or they changed their mind. So it was back to the drawing board, although she said that  they had another three potential matches identified, and that all three were reachable and had scheduled appointments for the follow-up confirmatory testing, but she didn't have results back yet.

Last Friday I again checked in and was told that all three attended their confirmatory testing appointments, but she didn't have the results back. She also explained that the transplant team met weekly on Tuesdays to make donation decisions. So since it was already Friday afternoon and she hadn't received the results, unless they came in on Monday, I should expect to hear something the NEXT Tuesday (March 3rd). I know it's not a race, but I can't help but worry as time goes on.

Today, shortly after the weekly meeting, the coordinator called me and informed me that they have identified both a primary and a back-up donor. That means that they have both made it through the testing and understand the timeline, which fits into their life. I immediately broke down. I am completely overwhelmed by the emotions I'm feeling--alternating huge smiles and sobs--thinking about the generosity of this person. All I know is that the primary donor is in their early 20's (here's why that matters), international, and also matches on my blood type. If all goes well and they are open to it, two years after the transplant we might be able to connect.

When I think back to late November, I wasn't sure I'd ever even leave the hospital. There were so many obstacles thrown my way, and every one of them read "unfavorable." Many of those still exist and I'm not through it yet--not even through the worst of it. But this is at least symbolically a big hurdle and a leap towards hope. I am feeling so very hopeful!

Drivers needed

I have to start this post by thanking all of you who signed up for my BeTheMatch campaign and/or shared it on their social media or with friends and family. I posted the link at about 6:00 pm Thursday night and by Friday morning 46 people had registered through that link. Wow!

Knowing that I will almost certainly be starting another round of chemo next week, I've been trying to be as active as possible. I took two walks yesterday--almost adding up to 5K. I hope to keep walking outdoors as much as possible during treatment as well as biking indoors on the trainer.

And with Greg no longer being able to work mainly from home, the time has come to request help in the form of drivers. I have set up a Google Doc with the appointments I'll need drivers for, and room for people willing to be on-call (in case the driver who signs up wakes up sick or something), too. I added a place to let me know if you are around during the week and during the day for possible last minute walks, too! I don't want to link the Google Doc here, but I'll post it on my Facebook page (only viewable by friends) and if you're not on Facebook, feel free to email or text me and I'll give you the link as well.

Thanks in advance to anyone who can help. I hate that I'm not able to drive myself when Greg cannot, but I am too afraid of what the meds may do to my vision! As you'll see on the sign-up sheet, you don't have to stay with me for my appointments (although you can)--even just dropping me at the front of the Clinical Cancer Center would be most appreciated.

I have dates through my next cycle of chemo there now. I'll expand with additional days and times as I know of them.

Thank you all--so very much.

Help save a life

I've posted about my need for a bone marrow transplant as the only possible cure for my particular leukemia. I've shared links to donate bone marrow before, but I am sharing a special post today, as wonderful colleagues of mine and of Greg's have organized bone marrow drives in February. I'll share specifics under the image below, but know that if you cannot make it to either of the drives, or if you live out of town, you can also register online at the same link (Join.BeTheMatch.org/LorisLegion).

In person options:

UWM at Waukesha
Commons Lounge
1500 N. University Dr.
Waukesha, WI  53188
Tuesday, Feb. 4th
11:30 - 1:00pm and 4:30 - 6:00pm
Open to the public.  No parking tickets will be issued, visitors can park in any visitor, staff, or student spots.  Enter the Commons Building and the Commons Lounge is immediately to the left.

Oak Creek City Hall
Main Lobby
8040 S. 6th Street
Oak Creek WI 53154
Thursday Feb 13th
10am-1pm
Open to the public. Visitors can park in the lot south of the building or on the street.


Alternatively, accessing the website link Join.BeTheMatch.org/LorisLegion allows you to request a kit to be mailed to your home as part of this drive.

It is possible that one of you might be a match for me, but you could also be a match to save the life of someone else (and actually, it's most likely that you'll never be called upon). There's lots of information on the BeTheMatch site that explains the process of donation, and many employers give you time off that doesn't count against sick or vacation time if you're chosen to donate. I would appreciate sharing the image and/or information about these drives on your social media. I will post (separate from this blog post) on both Facebook (making it public) and Instagram. Please share--especially with your young adult children (aged 18-44) if you haven't already.

And thank you, dear colleagues, for all you have done to organize the drives. It means so much to Greg and I!