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.

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.