Day -5

I forgot to share my address yesterday. For those who want to send me cards (NO obligation as I am getting plenty of love electronically!), it's:

My name
c/o Froedtert Hospital Inpatient BMT
CFAC 9th Floor, Room 6
9200 W. Wisconsin Ave.
Milwaukee, WI  53226

Day -5 has been another long one. The first day in the hospital isn't exactly restful under the best circumstances, but as I'd posted yesterday, there are a LOT of interruptions now. Starting at midnight I had a bunch of blood drawn (baseline tests for blood infections from the central line x2 plus routine labs). 4:00 am was vitals. 5:00 am was pre-meds. 6:00 am started the busulfan, so I had to quick order and eat breakfast and then began cryotherapy (sucking on ice) from 7:30-9:30. They ran a bunch more labs after the first busulfan which lasted periodically until 2:00. And I was wrong--although I got the fludarabine at 5:00 yesterday, I'll get it at 2:00 from now on.

two cups of ice chips plus two orange popsicles to prevent mouth sores

Dr. Longo rounded again--nothing of note.

The dietician came and shared all sorts of useful information. There's a "secret menu" that allows me to order some items from the other restaurants at Froedtert. For lunch I had a French Dip sandwich, which was pretty good. I got a supplementary menu that lists all the high protein items on the regular menu, so I can make better choices when I get to that point. She explained that transplant recipients have a very high metabolism, so even if I eat "normally," I'll keep dropping weight. I will also, with all the GI stuff coming up, get to a point where I'll need protein shakes/smoothies. But they have a bunch of additional choices beyond a can of Ensure. She also suggested having the nurses put any smoothie or shake in the freezer for a bit because they're better when very cold. Ugh... I am just dreading that part of the stay. I have to remember that it will be temporary and that my body will need protein to recover, however I'm able to get it.

PT came by after lunch when I was trying to nap. I opened my eyes, focused on her name tag, and practically yelled, "PHYSICAL THERAPY! I'VE BEEN WAITING FOR YOU!" She told me that PT is usually not greeted that way by inpatients. :)  I did my assessments for baseline and got a tour of the "gym," which has a bike-like machine, called a NuStep. It doesn't circle the pedals like a bike--just goes back and forth to strengthen other muscles. It also has arms that move back and forth--kind of like a recumbent elliptical! After I rode that for awhile, I asked if by chance there were any stationary bikes elsewhere in the hospital that I could use in my room. My room has plenty of space, and if I stay in it, I don't have to wear a mask. She said that they had one for patients in isolation but since no one is currently in isolation, I could keep it in my room. So now I have my own bike for the time being!

She also left me some resistance bands and exercises to do. In a non-COVID world there would be group exercise classes, including yoga. Now everything is individual.

I've continued walking laps. I got the details on the Marrow-thon, which is met if you walk a total of 210 laps. One of the nurses was teasing me for walking so much right away, and she said that she had one patient who completed FOUR marrow-thons during his stay. Guess I have a goal to beat... LOL

Every staff member has been wonderful here. I would obviously rather have my family and friends around during this, but it's so nice to have good people to interact with. Pretty sure I'm already known as the chatty one.

Thank you all for your wonderful messages and bike rides (and walks and runs and strength workouts) for me and for sharing them on Facebook. (If you aren't in the group yet, and are interested, my friend Jill set up a Facebook page called Ride4lori. She posted a big scavenger hunt of things to find on your own bike rides, runs or walks, and to post in the group for me while I'm in the hospital and can't get outdoors. Feel free to join!

And now I'm off to walk again and then shower and try to get to bed early. Hugs to you all.

Day -6

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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.

Food is love

Being an American middle aged woman, I'm certainly not alone in my lifelong struggles with food issues and weight.

I grew up in a family where food was love. My mom's dad was a pilot in the Air Force and my dad was a navigator. (My grandfather apparently told my dad he should meet my mom.) So both of them were world travelers and introduced to all sorts of "different" foods. I grew up in a small town in Northern Wisconsin pre-internet, and if you wanted ethnic food other than Italian, you had to make it yourself. My parents would mail order things like corn husks to make tamales or hot bean sauce and rice noodles for ants climbing a tree. We couldn't even buy tortillas locally so my dad (a carpenter) made a tortilla press. Cooking was a full family activity.

I was fortunate as a kid and teen to have a high metabolism, which kept me at a pretty average weight regardless of how much or little I ate. Then I went away to college and gained "the freshman 15" (and then some), at least partially because I had not grown up with processed food. In addition, I was introduced to all the other college aged women who knew more about dieting than I ever had, and I started on the path of searching for the perfect diet, and a way to stay skinny.

I love cooking. I love cooking for my family--especially when my big kids come home to visit and request meals. I love cooking for friends. When the kids were little, we could rarely afford to go out to eat and hire a babysitter, so we would take turns hosting friends and their kids. When my friends had babies, I cooked meals for their families. When my friends have had health issues or deaths in the family, I bring them a home cooked meal. I loved cooking with my parents and I love cooking with my kids. Food is love.

Each time I was pregnant, I adored the brief times of not thinking about how much I was eating. I took the "eating for two" thing a bit too far, but because I breastfed my kids for an extended time, all the weight I'd put on during pregnancy melted away, too.

I did have a few years after weaning my last kid where I kept eating like a breastfeeding mom, and the doctor's chart said that my BMI was overweight (BMI is bullshit, for the record). I would go up and down in weight, trying juice cleanses, skipping carbs, tracking everything I ate on an app, or whatever the newest fad diet was. I noticed that I did feel better and had more energy when I was lighter, but my love for food was more important than that feeling good thing.

Finally in the summer of 2013, I just decided that I couldn't give up the foods I loved, so I had to increase my exercise (energy balance--if you put more food in, just work it off by exercising). I trained for my first 5K. I loved how I felt when I was done running and that some weight came off but overall I just felt better. I was pretty comfortable with my weight and my body image.

And then I got breast cancer. In the week and a half between finding the lump and getting my diagnosis, I lost 7 pounds. I had at least that much to spare, but what was shocking to me was that I could not eat. I would choke down a mouthful of smoothie or a few bites of supper so I could sit at the table with my family, but the act of cooking no longer brought me pleasure, and the act of eating was really difficult.

I felt like my body had turned on me--the exact thing that had always symbolized love to me was distasteful.

During the course of my breast cancer treatment, I had periods where my appetite was ravenous (hello, steroids!), and periods where my tastebuds were off and I was again forcing myself to eat. But post-treatment, I got back to my normal--still overweight by BMI, but comfortable with who I was.

In 2017 I joined Team Phoenix and in training for the triathlon, I learned more about how weight isn't a good measure of health (I didn't lose weight in those 14 weeks of training although I was in the best physical shape of my life--I built muscle), and I learned more about the importance of eating GOOD food. Protein, fresh produce, and all the stuff I "knew" was better was really helping build my body as an athlete. Though I kept up with exercising (not at the same triathlon-training pace), my weight crept up again. But about all I could do about it was simple things like stopping having dessert or not eating seconds.

All this is to say that early in November of 2019, I was at about the heaviest weight I'd been outside of being pregnant. Then I got sick (pre-leukemia diagnosis, but now obviously related to the leukemia) and again dropped 7 pounds in a little over a week. I gagged as I tried to eat. This continued into my leukemia diagnosis and throughout almost all of my time in the hospital. When I got home in late December, I stopped losing weight so quickly, and ate a little better, but at my lowest, I had lost 40 pounds in less than five months. Every chemo cycle I've again lost my appetite and dropped a few pounds. Most of the time I can put those few pounds back on during the 3 weeks off, but I still keep moving backwards. (For more pure bullshit, I am now in the middle of "healthy" range for BMI. I can feel all my bones. This is NOT healthy.)

Perhaps the "silver lining" is that I can fit into my favorite pants from High School that I wasn't able to part with.

For the very first time in my life, I am obsessed with GAINING weight and not losing it. I know that the chemo I will start next week is INTENSE. It will cause mouth sores. It will cause severe GI distress. It will cause loss of taste and appetite. And I am terrified, as I know that my best chance to beat this asshole Luke Emia is to stay strong. For the fourth time in my life (three pregnancies and now), I am allowed to eat anything I want (other than raw fish, soft cheeses, berries) and as much as I want, and I'm trying to enjoy it.

But let's be honest--I'd rather be pregnant and looking forward to a new baby.

Do you believe in miracles?

I have a Team Phoenix sister who was diagnosed with t-AML from her breast cancer treatment a month after I was diagnosed with mine. Michelle recently completed all her pre-transplant tests and will be admitted to the hospital (a different hospital than mine) tomorrow to begin her intensive chemo in preparation for her transplant next week. When I was talking to Michelle this weekend about her plans and about my next steps (the clinical trial), she asked why I had to have another bone marrow biopsy on Monday, so soon after the last one. I explained that this was just a baseline for the clinical trial and Michelle said she had high hopes that the results from this biopsy would be good and I'd be back in remission. I said that was impossible, as I haven't had anything different treatment wise since my last biopsy and that the very best I could hope for was that things hadn't gotten worse. My blasts in the aspirate were between 5-10% and I was hoping that maybe my results would still be in the single digits. If higher, I was very much afraid of what that would mean.

So on Monday I had the pre-clinical trial biopsy, which was kind of a mini one. They only took aspirate (liquid marrow) and didn't need to take a chunk of bone like usual. I was pretty excited because I'm still in pain from biopsy #5 and this has so far been less painful.

Thursday (tomorrow) is an appointment with Dr. Atallah tomorrow, following twice weekly labs. My counts continue to drop, but I've avoided transfusions still. And when my phone rang this afternoon and the caller ID said Froedtert Hospital, I assumed it was a reminder for tomorrow's appointment. When it was Dr. Atallah on the other line and not the scheduling department, my stomach dropped.

He asked how I was doing and I said, "you tell me--you're the one with my test results." And he laughed and said, "You're doing well. You're doing very well. Your marrow shows that you have no leukemia." And I immediately said, "how is that even possible?" So he explained:

First of all, blasts in and of themselves are not necessarily bad. The only way to make new blood cells is through blasts (blood cell precursors). There are four things measured in a bone marrow biopsy. To be considered in remission, however, blasts need to be less than 5%. At the time of my last appointment, they only had the first two measures back.
The March biopsy showed:
Cellularity of 5-10%
Aspirate of 5%
Flow cytometry: nothing abnormal
Cytogenetics: only one of the 11 cells examined had any cytogenetic changes

The April biopsy only examined the aspirate, which he called the gold standard. And my aspirate showed less than 1% blasts present.

He discussed this with the pathologist and Dr. Hamadani (the transplant doctor) and they all agree that I am back in remission!!! He said the "worst case scenario" is that I am in remission with minimal residual disease (MRD), but it's possible I don't even have that. Either way, I am ready to go to transplant!

I told Dr. Atallah I had to go do a happy dance, and he said I should, as he'd done one early in the day. :)

It still seems surreal, but I have a new schedule of appointments. Friday I start the pre-transplant tests, including CT scans and pulmonary function tests. The echocardiogram that I had last week will be within 30 days of transplant, so I don't have to re-do that. If all continues to go well, I will now be admitted to the hospital on April 29 to begin ablative chemo, with my transplant date of May 5.

If a miracle is possible, all the warm thoughts and wishes and prayers have most definitely put me into remission. Thank you--every one of you! It's a very, very good day--so good, in fact, that I was barely bothered by the extreme cold and wind on our bike ride today, marking halfway through #30daysofbiking.

p.s. Best part--no chemo next week!

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.

Phase 1b Clinical Trial

When I was first diagnosed with AML, I was told (repeatedly) that for many reasons my particular type of AML had a lot of "unfavorable" characteristics. That meant that it would be less likely that I would achieve remission, and if I did achieve remission, there is a greater chance that I would fall out of remission. Finally, even if I did achieve remission and received a transplant, there was a greater chance that it would not be curative. I've known this all along, but I have to admit that I was feeling pretty good about things after two positive bone marrow biopsies. My February results showed a 0.1% population of marrow, and while there was SOME marrow, it was still considered minimal residual disease (MRD) and I was considered in remission and able to proceed to transplant.

Unfortunately, today when I got my results from my March bone marrow biopsy, they were not good. I'm back up to 5-10% marrow population, out of remission, and not able to proceed to transplant at this point.

I was presented with two possible clinical trials.

1. CLAG-M plus lintuzimab which would involve a hospital stay of 4 weeks (without any visitors). It would be similar in intensity to the 7+3 that I started with at St. Luke's (ie: very harsh). If successful, I would then move on to transplant.
2. PAVE, which is Vidaza (on now) + Venetoclax (on now) + Pevonedistat. This would continue on an outpatient basis, with the same chemos I'm on, plus the Pevonedistat, which may have success against the leukemic cells that have not been killed off by the Vidaza + Venetoclax. If successful, I would then move on to transplant.

I have decided to do the second option, both because it is less invasive, and because if it does not work, I can always go back to the first option.

I am very disheartened. Dr. Atallah called it "disappointing news," but he's not ready to write me off yet. In discussions with him, I've found two possible good things to come out of this.

First, if I'd gone ahead with the transplant, it would not have been successful. We know this because it takes 2-3 months after a transplant for the new bone marrow to take over. Given the trajectory of my marrow (going from 0.1% to 5-10% in a month), it would not have been a successful transplant if we had gone ahead. This at least gives us a better chance of a successful transplant (if I get that far). Secondly, I have been pretty concerned about COVID-19 and what that would mean for my disease, treatment, and transplant. Having to step back means that my transplant will at the very least be pushed back a month. That gives an extra month for the world's brilliant scientists to come up with possible treatments, tests, and work toward a vaccine. It also gives an extra month to step up PPE production and to flatten the curve, so that my time in the hospital will hopefully be less risky.

They're not wonderful silver linings, and I would be lying if I didn't say that I was pretty crushed by this news. But there is still hope. And I will continue to move forward one day at a time.