Superstitions and good luck charms

I wouldn't say I'm terribly superstitious, although I think some (ahem, Greg) might disagree. I do know that my mind plays games with me during difficult times, and having items or routines or explanations sometimes get me through those difficult times. As an example, last night I realized that today's appointment with Dr. Atallah would be a big one with potentially lots of scary decisions made, based on information that I did not yet have. I knew that all along, but what I realized was that I was not completely panicked about it. I'd been sleeping pretty well and able to function somewhat normally. And the fact that I wasn't freaked out freaked me out! Whether it's guilt or something else, I made myself think of the bad stuff that could happen at today's appointment as a way of maybe warding it off. (Messed up, huh?)

The other thing that I started with my breast cancer diagnosis is the inclusion of good luck charms (for lack of a more encompassing term). It started with my Buffy the Vampire Slayer visualizations, aided by the fact that Greg and I binge watched the entire series (and Angel) while I was going through treatment. And I also visualized Joan of Arc, and wore the Joan of Arc charm that my neighbor Tracy gave me. Later, my friend Jim gave me a book about Joan of Arc's life. I didn't carry the book around with me, but it held a place of honor in the mini shrine that I created with cards from everyone, and other good luck items from friends and family.

This time around, on important appointment days, I wear an assortment of good luck charms, talismans, memory objects, whatever you'd call them. But I have so many that I can't wear them all at once!

Today I wore:

Three bracelets: "Badass" that matches my amigas; STRENGTH HOPE COURAGE from Coach Kristin; keep fucking going from Cara 

My mother's necklace

One of my Cadence shirts, in honor of my biking friends

My Team Phoenix tattoo :)

My PUT 'EM UP tough girl socks

And I put on ginger essential oil from Meredith.



Some of the other awesome socks and shirts that rotate in include:

hell raiser biking girl socks--one pair from Ashli; one from Meredith

Five Card Studs tee, reminding me of happier times, from Kim

A fat tire tee, from what should have been my first fat tire race, from Mitch

An awesome Buffy tee, from Sarah

At any rate, all my good luck charms seem to have worked, as I had a good visit today.

First of all, every single appointment was not only on time, but early! Greg brought me but had a noon online meeting, so I got to the Cancer Center over an hour before my lab appointment. I was called back fifty minutes early! Then we went up to the Grace Clinic and I got in to that appointment half an hour early. Finally, I got to the Day Hospital for my chemo infusion and was brought back twenty minutes early. I feel bad for complaining in the past (but so happy to not have to sit in a germy waiting room as long). I also was so lucky to run into my Team Phoenix sister Luz at the lab. I wish I'd thought to take a picture of us.

My hemoglobin is up to 10.7
My platelets are up to 87K (Class of '87 rules!)
Unfortunately my white blood cells (and neutrophils) continue to drop, making me neutropenic again, and they will only continue to drop. That means that I need to stop going out in public unless absolutely necessary, and need to curtail visits. The state health department reported this week that we have not yet hit the peak of flu season, and it takes a month after peak to really taper off, so that's kind of scary. I'll be as good and safe as I can, and I believe I can still continue to walk and bike outside--and I intend to do my socializing that way!

The bone marrow biopsy results were back, and while not perfect, they are also very good. Here's a page that describes what tests are done on the marrow.

One way they examine the bone marrow is by flow cytometric analysis. Flow shows only 0.1% residual disease (MRD), keeping me in remission, although any MRD is not good and increases risk of recurrence.

The cytogenetics were also examined, and all previous abnormalities (the 14 mutations in December and 8 mutations in January) were gone! However, there is a more sensitive test done when the initial cytogenetics are clear (Fluorescence in Situ Hybridization, or FISH). Unfortunately my FISH test still found that 1.5% of my cells had an extra copy of chromosome 8 (trisomy 8). A quick search of research articles tells me that Trisomy 8 is one of the most common genetic mutations in AML, and that it puts me in the intermediate risk group for recurrence, and it is recommended that those with Trisomy 8 AML have an allogeneic bone marrow transplant. Luckily, I already have that (somewhat) lined up! :) (A quick note that many AML research papers that compare outcomes don't take into consideration a transplant--they refer to remaining in remission with "only" chemo or other meds.)

Dr. Atallah said that we are "heading in the right direction." While he said he couldn't guarantee it, he expected the transplant would happen in 6-8 weeks(!!!). That means this should be my last round of Vidaza infusions, I should only need one more bone marrow biopsy before the transplant, and because my hemoglobin and platelets look good, that I should only need labs twice a week (those have been added to the google spreadsheet). I will keep taking the Venclexta every day. I also dropped my pre-med Zofran amount by half (I feel better now--hoping it's enough to hold off any nausea and cut back on the icky side effects), and I made an appointment to see the dentist for a check-up before the transplant. Shit is getting real!

And I credit all of my good luck charms because they hold the love, concern, and positive thoughts from you all.

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!

Disability--and depression

First a quick update:
Friday was bone marrow biopsy #4. On a scale of how much it hurt, I'd put it at third. But it healed quicker, allowing me to bike already on Saturday.

I will meet with Dr. Atallah this Thursday to get the results (including cytogenetics) and presumably to start another round of chemo--7 days of Vidaza infusions. I've updated the Google Doc with additional days I'll need rides. Some of those might be longer, if I need transfusions. It will be interesting to see what happens to my counts this time. My hemoglobin and platelets are actually still pretty high (Friday they'd gone up from my Monday appointment--86K!), although my neutrophils are on a steady decline, which means my brief ability to be out in public for coffee is gone again. At any rate, Greg can always come get me post-transfusion if you sign up to drive me but have to leave before I'm done.

Today, Monday, February 24, is my first day on disability. I have been out of work for 90 days. That's the length of a maternity leave (I would much prefer to have a baby to show for this!). It's something I never thought I'd need, but here I am, and I'm so relieved to have it available. I am fortunate, too, to have amazing co-workers who donated sick time to me so that the number of days I went without any pay were minimal. Throughout this whole experience, I have been continually brought to tears by the generosity of all my friends. I cannot imagine how people do something like this without that support. I will say, however, that it has been tough to not be working and using my brain. I worked throughout my breast cancer treatment--first part time and then full time--and it allowed me to feel at least somewhat normal. I miss that normalcy.

And that brings me to the "depression" part of this post.

Facebook has been reminding me of events that led up to my first bought with Major Depressive Disorder with Anxiety. Eleven years ago this week, after a lifetime of nothing more extreme than PMS, I was completely debilitated by a depressive episode. After twelve years of being a stay-at-home mom, my baby was in school and it was time for me to go back into the workforce. I didn't have a plan for what I was going to do beyond "return to the workforce when the kids are in school." I started applying for jobs either in or out of my first career field (education). I was turned down from every job I applied for. I looked into returning to school to be a nurse, which was what I always thought would be a great fit, and every program would have made me start over with 100 level science courses since I'd been out of school so long. (Never mind that I'd taught or tutored those classes, because it was more than 10 years, they didn't count.) I felt useless--my kids didn't need me like they had and I wasn't contributing to the household at all. I felt lost, and I fell apart. I was fortunate to have insurance which covered me to almost immediately see a therapist, while waiting for an appointment to see a psychiatrist and get medication help. I was virtually bed-bound and unable to interact with anyone beyond my immediate family. It was terrifying--for me, but I know for my family, too. And over a period of several months, I was able to learn coping strategies (my therapist was awesome) and of necessity I weaned off of the Zoloft I'd been prescribed (because it was causing my platelets to drop even lower and the psychiatrist was concerned).

Then midway through my second year of grad school, it hit me again. They tried another antidepressant, which spiraled me into further anxiety (I guess this is relatively common), and it took a few months to get out of that episode, too, although I was able to continue to go to school and work through it. My therapist had retired by then, but I used the skills she'd taught me and worked my way back out again. And it wasn't until I found the lump in my breast in November of 2014 that that feeling overtook me again. I went back on Zoloft through my breast cancer treatment, until I couldn't be on it anymore (when I started Tamoxifen). And I found that, despite my fear of not being able to take them, I was again fine without them.

At any rate, I have been thinking a lot about depression lately. Right now I'm in a relatively similar situation to where I was eleven years ago--home full-time, mostly alone. I feel like I don't really have a purpose, as I'm not working. And if you add in the bit about being mostly house-bound plus that diagnosis of a second cancer, it would come as no surprise if I'd again feel depressed.

And yet somehow I'm not. I'm frustrated at my lack of contributions and I fear my brain will forget how to work. I continually list the things that I had planned to do this year, but won't be able to (go to Trav's graduation; bike the 150 mile Scenic Shore; visit Cara in La Crosse; do college visits with Ash...), and I have momentary periods of sadness and "that's not fair!" but I have not fallen into that depressive spiral through any of this.

I have a theory. Eleven years ago, at least in my mind, I felt that depression was not something to talk about. It was something that you hid, and tried not to label. Medication and therapy were both looked down upon. And so I tried to face it mostly alone (not entirely true--Greg totally got me through!). And then my breast cancer diagnosis came, and when I decided to be public with it, the outpouring of support was amazing. Much as now, with my leukemia diagnosis, people flooded me with notes and gifts and general good thoughts. I once read a quote that said simply, "Depression Lies." For me, that's exactly what it did to me during those three depressive incidents--it convinced me that I was useless and that no one needed me. But now, with so many people reaching out after my cancer diagnoses, even without some of those coping skills learned in therapy, there was no way that I could argue with the fact that someone needed me. A hell of a lot of you "needed" me--and cared about me. And there is no "depression" this time.

So my wish is that we, as a society, were able to do that and to be there for people who have mental health issues, too. For that stigma of saying, "I am depressed" or "I can't get out of bed today" to go away, and for us all to completely embrace people with mental illness like we do for physical illness. Because you know what? Those scary depressive episodes I had were worse than any of the cancer treatments I've had. And just as I know that no one would judge a cancer patient who is utterly exhausted by their surgery, chemo or radiation treatments, there should be no shame in being bed bound by anxiety or depression. A card, a note, a text, flowers, a visit, a gift certificate, a lunch date... all of these things that people did for me after my cancer diagnoses would have been helpful when I was struggling with depression, too. (Although I didn't know it at the time and certainly didn't share it.)

If you are dealing with depression, whether you feel you can label it or not, if you want to, please know that you can tell me. Because depression is a filthy dirty liar that makes you feel worse than any physical pain. And I will be the first to tell you what a horrible liar it is, and I would love to help you see your worth. You are needed. You are wanted. You are important. And you are loved. And there are better days ahead.

...and I'm feeeeeeeling good!

I preface this post by saying that I know anything (and everything) can change in a heartbeat. I'm not out of the woods, and there are a lot of really scary things ahead, but right now I'm feeling good.

After a beautiful winter snow storm all day yesterday, the sun is out, the sky is blue, and I drove myself to Froedtert for my lab and nurse visit.

My numbers are still good:
WBC--3.1 (down a little; normal 3.9-11.2)
ANC--2.14 (normal 1.9-7.8)
HGB--9.8 (normal 11.3-15.1)
PLT--55K (down a little; normal 165-366K)

And because my neutrophils are in the normal range (and have been so since January 29), I asked if I could start doing some "normal" things.

The first thing I asked about was eating fresh produce. The nurse said that, yes, with my neutrophils where they are, I certainly could. She then elaborated and said that research has not proven that there is a need to follow the older "neutropenic diet," and that, in fact, newer research shows that elements of it can be detrimental. (Here's a study about it.) She said that there are still doctors who recommend it because that's they way it's always been done. And I instantly thought of my favorite PT, Dr. Leslie Waltke, and the first time I heard her mind-blowing lecture that, even if you've had breast cancer, surgery, lymph node removal, etc., that there is no reason to avoid blood pressures or sterile needle pokes on that arm. That you don't need to wear a sleeve to fly in an airplane, and that most of the lymphedema restrictions are in place only because someone somewhere thought they made sense and now it's the way it's always been done. Anyway, guess who's having a giant salad for dinner tonight?

I also asked about venturing out in public, as I'm growing tired of spending all my time in my house. Again, because my neutrophils are normal, I was given (limited) ability to do social things outside of the house--still wearing a mask, of course! Specifically I asked about attending the knitting group that meets days at Corner Bakery. I received a resounding, "yes--and you can enjoy a cup of coffee while you knit." I also asked about eating out, and she said to avoid fast food, and things like raw fish and cheese with mold on it, but if I knew of a small restaurant and went at a not-busy time... I think I'll probably err on the side of caution there, though, as it is flu season and while I can be a bit more adventurous, I don't want to be foolish!

I'm looking forward to the days getting (noticeably) longer and more biking outdoors. I'm knitting a lot, listening to some great podcasts (if you haven't listened to Dolly Parton's America, it was fantastic!), watching some good TV shows (enjoying Sex Education on Netflix, although I think I liked Season 1 better than Season 2, so far), and cooking a ton.

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I wanted to address all the wonderful comments I received on my Facebook post about days 8-14--specifically this photo:

I guess I had not really used the word "remission" before--and until it was in my chart, I didn't really believe it. When I posted about my first post-biopsy appointment with Dr. Atallah, he said that there was no evidence of leukemia, which is the definition of remission. I do still have cytogenetic changes, which is part of the reason why I did another round of Vidaza and also added the Venclexta. But the cytogenetic changes do not mean that my bone marrow is not hypocellular or that I cannot get a bone marrow transplant. (In fact, I can and will, as soon as a donor is found, and if I remain in remission at my next biopsy, which will likely be next week.) What the cytogenetic changes mean is that, whether I continued now with monthly chemo (maintenance) or if I receive a bone marrow transplant, I am more likely to relapse. Relapse occurs in about 50% of patients who initially achieve remission, and it can happen anytime from months to years after remission. Given that my AML was caused by my breast cancer treatment, that was kind of my one try at staying in remission without a transplant. The only possible cure is through a bone marrow transplant. If the cytogenetic changes disappear before the transplant, the risk of relapse post-transplant drops greatly. But if they do not, transplant can still delay relapse. Either way, I need to get to that transplant.

And that's why I'm sharing that the second bone marrow drive will happen this week. Please continue to share the information with anyone aged 18-44 that you know. If they aren't local and/or can't make it to Oak Creek this Thursday, they can request a kit to be mailed to them by visiting join.bethematch.org/LorisLegion or by texting LorisLegion to 61474.

You have all been AMAZING! I learned today that so far 86 donors have made it through the initial screening and signed up under my code or through the first bone marrow drive. That doesn't include those of you who stepped up before anything was organized in my name. It brings me to tears every time I think about it. So many potential lives saved!

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This song just keeps going through my head. It's getting me through until my transplant. I encourage you to take three minutes and listen:

Feeling Good by Nina Simone

Another round of chemo done!

Sunday completed day seven of the second round of Vidaza (third round of chemo). Let me just say that chemo seven days in a row is more exhausting than one would think. I am lucky that my care team scheduled afternoon appointments because I'd finish the appointment and be rather zombie-like. However, after a night of sleep, I could function semi-normally the next morning until I had to do it all over again. Thank you so much to everyone who drove me to appointments, walked or biked with me, or came to visit and keep me entertained.

I met with Dr. Atallah yesterday. Blood counts are still in the good range:
WBC: 4.0 (low normal)
ANC: 2.92 (low normal)
HGB: 9.5
PLT: 79K

Given the fact that I've had a week of chemo, I wasn't sure if having "good" counts was actually a good thing, or if my counts should be dropping to show that the chemo worked (because both previous rounds the counts dropped by day 7 and yesterday was day 8). However, in November I had come into the hospital with low counts initially, and my second round of chemo (first Vidaza) was started before my counts had a chance to recover from the first round, so it's more typical to see the drops around day 14. I will have labs drawn twice a week for the next two weeks, and then see Dr. Atallah to determine if I have another bone marrow biopsy. (I've added days needing drivers to the google spreadsheet.)

I then asked about the cytogenetics and what impact they will have on my transplant--that is, if the biopsy still shows mutations, does it delay the transplant? He said that he would discuss it further with Dr. Hamadani (the transplant doctor) but that it would not delay the transplant--the impact is that if there are still cytogenetic mutations, it's more likely that I would relapse after the transplant. They can give additional chemo post-transplant to minimize this, but it's a very real risk. So let's hope that the current Vidaza + Venetoclax are knocking out the genetic mutations in preparation for the transplant.

If my next bone marrow biopsy shows that the bone marrow is still hypocellular and blast-free, and a donor has been secured, then we move to transplant. (This is both extremely exciting and absolutely terrifying.) As a general guideline, I'd be in the hospital about a week to get intense chemo to knock out my entire immune system, then the transplant, and then in the hospital about 3-4 more weeks to build up my new immune system and manage side effects. It's getting real.

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Other than doctor appointments, I've been watching some TV (finished The Good Place--soooo good! Finished Grace & Frankie--which I'm lukewarm on). I tried several podcasts and absolutely love Dolly Parton's America! I've done some biking (indoors and out). And I finally finished the socks that I started knitting for Greg when I was admitted to the hospital in November.

I feel very lucky that January was relatively mild and allowed me to be outside as much as I was. The outdoors are an amazing mood-booster!