Now entering Nadir

I've written about nadir before--essentially the low point in blood counts after chemo is given. But nadir after leukemia chemo is even more intense than it was during breast cancer treatment.

If things proceed as expected, the max chemo is in my body on day 7 of treatment. That was yesterday. Here's a picture of me being disconnected from seven straight days of chemo.

For days 10-14, the maximum killing power of the chemo takes hold and the blood cell counts (and all the other fast-growing cells in my body) are at their lowest. I'm told to expect to need lots of transfusions, lots and lots of rest, and to feel generally really crappy. After a few days, if all goes well, my healthy cells will start their recovery and I'll gradually feel better. What that means, is that I would like visitors, but it is entirely possible that I may change my mind mid-way through the day. Please don't be offended if I either cancel a visit or cut it very short.

Yesterday's counts definitely supported nadir, as have today's:
WBC:  0.2, 0.3 (since the chemo is done, these will slowly start to climb up, but will likely stay pretty low through the next few days before the climb up)
Hemoglobin: 7.4, 7.1
Platelets: 11K, 6K

No blood products needed yesterday, but today I'll get platelets again.

And to kick of the celebration of finishing this first round of chemo, I had the most wonderful morning! Milwaukee does the coolest biking event, called the Santa Rampage. At this event, literally thousands of people dress up as Santa (or elves, etc.) and ride their bikes from Wauwatosa to the lakefront. It's been happening for 15 years, and I'd wanted to ride last year, but caught a cold and it was rainy. I'd determined there was nothing that would stop me from riding in it THIS year. I bought my Santa suit on clearance last year and planned to ride my fat tire bike with all my biking friends. So I was pretty disappointed to not be able to ride in it this year, either.

However, my dear, dear friends, surprised me and found a way for me to participate--they brought the ride to me. :)  Barb did the actual ride, and then came to the hospital while Meredith came straight to the hospital and helped me get ready for it. We decorated the exercise bike, Barb wore her Santa stuff, Meredith wore her Christmas sloth outfit, and I had a silly hat. It was amazing (and we made the staff laugh a lot, too).

And then we went back to my room and Meredith cleaned it and decorated it with tinsel and the lights that my friend Chris had brought me.

And because I was so exhausted that I could barely keep my eyes open, Meredith, who is the most awesome K4 teacher ever, read Barb and I a bedtime story. And then I fell fast, fast asleep.

Greg came and watched me sleep, and then I was able to be leave the floor and walk with him to the healing garden--which is amazing. For Milwaukee people, it's like a mini-Domes with giant indoor plants and trees. I will be spending more time there.

And then I was unhooked completely from the IV, took a nice, long shower, and was able to walk without the IV pole for the first time in over a week. I wanted to run, it felt so good.

I was treated to the most spectacular sunset (which my photos cannot do justice to, but up on the 12th floor, you really get to see it from all angles).

And I had a long, barely-interrupted night of sleep.

Already today there are little annoyances: I feel like I'm getting a cold or something, with a scratchy throat, itchy ears and post-nasal drip; one of my two picc lines appears to be clogged and so they're trying to unclog it, but it hasn't yet responded completely and if not both are working, then I can't get two things (like platelets and IV antibiotics) at the same time. Food still tastes yucky, and I'm just missing my home. But I feel so surrounded by love--both from those who are physically with me, and by all the messages, texts, facebook comments, and just general good feelings. I don't have fear or anxiety--I'm able to just focus on healing. And that is an amazing gift. Thank you all.

Nadir

Today was my one week follow-up appointment with Dr. Shah (medical oncologist), to see how my body is tolerating the chemo.  One week is the beginning of the period known as nadir, which directly translates to "the lowest point."  In this case, it means the lowest point in blood cell counts.  And my counts are definitely in nadir!  Dr. Shah called my white blood cells "low" (1.8K), said my platelets are 34K, and my hemoglobin is back down to 9.5.  BUT despite those measures, she was not concerned.  She said that it appears that my body is tolerating the chemotherapy well.  I just have to watch for fever, body aches, etc. as my immunity is definitely suppressed.  She stressed being careful with interactions with other people, especially avoiding sick people, shaking hands, kissing, etc.  And I also need to be very aware of any bleeding since my platelets ARE low.  She told me to expect the exhaustion to build as treatments continue, but that the other side-effects shouldn't get much worse.  

Of course, as soon as I posted that I didn't have any side-effects, I started to get some!  :)  Nothing too terrible yet.  Mostly exhaustion that just appears, some stomach upset, and I finally realized that the taste of blood in my mouth was likely the metallic taste that comes with chemo.  Perhaps the most disconcerting one come from the steroids.  EAT ALL THE FOOD ALL THE TIME!!!  For two whole days I think I ate around the clock. And it wasn't just like I was nibbling on things--I was starving the entire day.  At my appointment today, I'd gained six pounds since last week.  That cannot continue happening.  Luckily, I only take 3 days of steroids and only following the first four rounds of chemo.  Already today I have switched to feeling "hungry" and not "ravenous."  Still, I cannot gain 6 pounds four times.  UGH!

I've also set up my next chemo treatment for Wednesday at 1:00, so I need to get going on that Excel spreadsheet of friends to take me.  It's the younger kids' Spring Break, so I have to decide whether to make both of them come along, or just Travis... :)  Either way, I see cribbage in my future.

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The other big thing that happened since my last post is that Greg and I finished watching Buffy the Vampire Slayer.  I'm still processing the ending.  The cool thing is that we didn't realize it at the time, but we actually watched final episode on the 18th anniversary of the airing of the first episode.  I love Joss Whedon...

Lower counts and little issues

When I blogged about Nadir last, I mistakenly stated/remembered that it was days 7-10 after starting chemo. So I was pretty happy that I did pretty well this weekend, just needing a little more rest, and was looking forward to Monday (Day 10) being over the worst and moving on. And then my nurse said something like, "just remember that days 10-14 can be very intense and some people lose their appetite and really do need to take those naps that you are trying to avoid, and it can be a rough couple of days." And then I remembered that Nadir is 10-14, and not 7-10.  I wasn't just getting out of it, it was just getting INTO it.

My counts continue to remain low:
WBCs holding steady at 0.3 the last few tests
HGB bouncing around 6.4, 7.7, 6.7, 7.3
Platelets also bouncing 14K, 33K, 20K, 43K

I received both blood and platelets yesterday even through my platelet level was above the cut-off. I'll get more of both today, too. (More on that later.)

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My wonderful, generous friend, Team Phoenix sister, and leukemia survivor Vanessa came to visit yesterday. Vanessa immediately reached out to me when she heard of my diagnosis and has provided such a "been there" perspective since the start. Talking with her yesterday in person was wonderful. She also works for an organization called Tricia's Troops, which provides all sorts of amazing support to all kinds of cancer patients all over Southeastern Wisconsin. Vanessa brought me a lovely chemo support bag, and the group helps with things like housework or child care or transportation. If you're a cancer patient (or love one), check them out. And if you're looking for a place to donate, also check them out.

And after a not-terribly-long visit with Vanessa, I absolutely crashed and slept all afternoon. Guess this exhaustion thing is no joke. I had a few hours of awake time, visited with Greg and Ash, and was asleep again before 9:00 pm. Wow.


Unfortunately, what's been overlaying all of this for the last two days is a troubling side effect of, I assume, the chemo. I was showing some signs of a possible GI tract bleed, which resulted in lots of (not) fun observations and measurements. While I haven't been nauseous (knock wood), my stomach has been ouchie (for lack of a technical term), and I've developed heartburn, and some intestinal cramping. Just enough for my comment of, "I'm in no pain," to no longer hold 100%. So it's caused some changes in protocol. They bumped up my blood count tests from 24 hours to 12 hours (and now 6 hours). They immediately gave me more platelets, regardless of my count, and they changed the cutoff from 10K to 25K (it has since risen to 50K). I also got whole blood and the HGB cut-off is raised from 7.0 to 8.0. From what I can tell (supported by research that my amazing PH researcher friend Susan has done), this GI stuff is very common with these chemo meds (the bleeding less so, but we're working on that). And I'm on two antibiotics, which always impact my stomach. The most frustrating thing is that when the stomach cramping hits, it hits. So I've been afraid to walk as much and be far from my room, and going down to the Healing Garden seems way too far. These both make me sad. I'm hoping that the bleeding stops soon so I won't be burning through the platelets so quickly.

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Finishing this blog with stuff about today.

Day 11 was pretty similar to day 10. I had a pretty productive morning with several cool visits, and then a complete crash shortly after noon. After a nice snooze in the sun, and a visit from massage therapy, and a shower and a walk around the floor and in the healing garden (without an IV!), I'm back in my room, hooked up to fluids, awaiting the latest CBC counts to see if I need more platelets, and I also just found out that they think the rash on my stomach is in response to one of the IV antibiotics that I'm on (Cefapine). So I'll be switching from that one tonight. Unfortunately, instead of a half hour run time, the new one will be an hour and a half, but only once a day. I hate to be running out of antibiotics I can use, as I'll be on a lot of antibiotics for a long time.

And I had a little more energy today than yesterday. I'm not back to walking as much (and haven't been on the exercise bike), but I was able to add the squats back into my walk this afternoon. I was thrilled to see another patient working hard on strength exercises at one of the windows as I made my circuit.

I did get to meet the (new) Chair of the department yesterday and had a long talk with him about my plan. I'll try to write that up tomorrow. Until then, keep visualizing my bone marrow being completely destroyed and cheer with me when I feel crappy, because that's probably a sign that it's working. :) 2/5 days of Nadir in. I can do this!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The plan, clarified

Monday I finally got to meet the new chair of the St. Luke's Hematological Oncology group: Dr. Medlin. I have heard so much good about him from all the staff. And he's great. Down-to-earth, answers questions at the level I've asked (he asked my background to clarify), positive, confident.

We spent time talking about the plan for my treatment, which didn't change from what others had told me, but which was clarified somewhat.

We started with induction chemo to get my body to go into remission. We will know if that was achieved (or at least the first step toward achieving it) when we get the results from Friday's bone marrow biopsy. So yes, the bone marrow biopsy will be done on Friday. Results will take a "few days." There are two goals:

1. The bone marrow is essentially empty. We want less than 5% of cells within the bone marrow, which indicates that the chemo cleaned it all out.
2. Of the cells left in the bone marrow, less than 5% of them are blasts (cancerous cells).

If both of these things are achieved, then stage one was effective and as soon as I can maintain counts and fluids and everything enough that I need only be seen on an outpatient basis, I can go home for a few weeks.

If either of these things are not achieved, then stage one was not effective and we need to do another, different round of induction chemo. This is the stage that makes my heart race. This would prevent me from being home for Christmas, and it would certainly be a "harder" chemo on my body, plus just an addition chemo in general. But Dr. Medlin did a great job of explaining why this is an important step and why, if this happens, it is not the worst possible thing. Previously, treatment involved this 7+3 chemo, then the rounds that follow (I'll get into that shortly), but they were not able to determine if the chemo was actually effective. So you'd go through the whole process and not even have received remission, which meant that it was not going to be effective. Adding this step, and the sensitivity that is now achievable, means that more people are in true remission and have better outcomes. I like better outcomes.

Next step, once that first round of remission is achieved, is to do four rounds of maintenance/consolidation. Dr. Medlin explained that, even when there may be no evidence of cancer cells, there are still likely as many as 10^12 cells in the body (the "undetectable level"). Much like how many breast or other solid tumor cancer patients may have surgery with clean margins and clean nodes, but still have chemo after, that is the purpose of the chemo.

And then we move on to the bone marrow transplant.  There are only three options for an allogenic donor:

1. A full-match sibling, matching on 6 of 6 Human Leucocyte Antigens (HLAs)
2. An unrelated perfect donor, matching on 10 of 10 HLAs
3. A haplo-identical donor, like a child, matching on 5 of 10 HLAs

The reason you can use a half match with only 5 of 10 is that you'd only use a related haplo donor, and there are many other factors that aren't tested/matched on, but are also important and helpful in minimizing the likelihood and severity of graft vs. host disease (GVHD). These factors tend to clump together in familial lines, so while the third option is riskier, it can be done.

I'm trying not to think about the fact that finding a donor is an "if" and not necessarily a "when." There are certainly many people who do not find a donor by any of those three means. But I'm also hoping that karma, and all my wonderful loved ones who have recently signed up to "Be The Match" have someone or else on the other side of the world with just as many amazing loved ones signing up for them and somehow we'll all end up matched. 

As far as preparation for a bone marrow transplant, it is another chemo regimen of 5-7 days. Full body radiation is not usually used in AML (more often in ALL), so probably not necessary. And then the transplant itself is relatively simple--just like a blood transfusion. The hardest/worst part is waiting to see if it takes and how bad the GVHD is. I have decided not to look too far into that at this point.

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Other than that, I'm just keeping on here in Nadir-land. Still having the lovely GI issues. My new antibiotic (meropenen, since I developed that rash in response to the cephapine) seems to give me a headache. At least, both times I've received it, I've developed a headache at the base of my skull within a few minutes of the IV beginning. Last night I slept through most of it, but this morning it is still with me. Even a visit from massage therapy and some essential oils only slightly tamed it. 

With the new blood thresholds, I needed both blood and platelets last night, which made for a long night with all the vitals checks that they do before, during and after receiving blood product. This morning my counts were sufficient enough that I didn't need any product (WBC: 0.3; HGB: 8.3; PLT: 71K). Next draw is at 10:00 am and I'm crossing fingers that I'm holding onto things well enough to not need more. I don't know how long I'll be at these higher thresholds. Hopefully my own cells will start coming back soon and that will both decrease the need for the transfusions and prepare me for possible release from the hospital.

Whether it's the interruptions last night, or day 12 post-chemo (3 of 5 Nadir), I'm thinking I might actually need a morning nap today. I'm pretty happy that it's another beautifully sunny day. I hear it's cold outside, but I wouldn't know that from my room. :)

Day +104

Thank you to everyone who reached out to me in one way or the other over the last week or so. I realize it's been a long time since I've blogged. I have had a blog post partially-written for about a week, but just haven't had the desire to finish it. But I'll do it today! :)

Even though I'm not on the traditional path as most BMT patients, I had wanted to post on what is still the 100th day after my transplant. That was last Thursday. But when the day came, I just wasn't feeling it. No celebrations, not particularly good news, nothing worth posting. But I *am* on the other side of those hundred days, and I'm still alive, so that's something! 

This chemo (Decitabine + Venclexta) is supposed to be a milder chemo, but it really knocks me out. The week that I have infusions is actually pretty good (other than the annoyance of hospital trips and infusions and waiting). The weekend after I feel a little queasy and not quite myself, but that's not terrible. Then I have a few decent days before my counts start falling. And this nadir seems to last a full two weeks. I'm right in the midst of it now and if this second cycle follows the pattern of the first, I should start creeping out in a day or two.

I have essentially no WBC (ranged from 0.2-0.4; currently 0.2). My hemoglobin has been crappy (7.4-8.8; currently 7.4). My platelets have dropped since my last post (50K - 8K; currently 19K). About the best thing I can say is that (so far) I've needed fewer transfusions this cycle than last cycle, but I've been close.

I also wanted to share information from my last appointment with Dr. Atallah a week ago. Since my WBC counts are so low, they are unable to check my peripheral blast percentage and we won't know if this chemo is effective until my next bone marrow biopsy, which is this Wednesday. I will get results from the biopsy at my next appointment on Monday the 24th. The absolute BEST case scenario is that my biopsy will show that my marrow is clean (send those vibes!). If my marrow is clean and my counts have rebounded some, I'll start the next round of Decitabine that day. If my marrow is clean and my counts are still low, I'll take a week off to let my counts rebound and continue with Decitabine treatment. But if there's still stuff in my marrow (and let's be honest--this is probably the most-likely thing), then we will talk about clinical trials. 

After that discussion, Dr. Atallah said, "now we have to talk a bit about something else." My heart dropped. And he continued, "I've heard that you have concerns about people not wearing masks in the cancer center." <insert sigh of relief> To make a long story short, he pointed out that some patients (like lung cancer patients) may not be able to wear masks and that is between the patient and their doctor. (I did ask if they couldn't immediately put those patients in a room instead of the open lab and waiting room. He said he'd look into it.) I also said it wasn't just the patients, but caregivers. I said that I am an outspoken person and I had a hard time saying anything and that I finally said something for all the other patients who were also being put at risk. He asked me what they could do to make me more comfortable. My eyes welled with tears, and I said I just didn't know. He asked if I would feel better going to a local clinic for blood draws and I said that I knew Mequon didn't draw from a PICC line. He asked how inconvenient New Berlin would be for me. My amazingly intelligent, busy, kind oncologist then called up Google maps on his computer to see how far of a drive it would be. It turns out that the New Berlin office is closed in the interim. But then he asked about Drexel Square. He told me they can do labs and all treatment except for the doctor appointments there. And I clarified that he wasn't going to drop me as a patient. He laughed. Then he called to have my future lab appointments changed to Drexel Square, effective immediately. And he thanked me for looking out for all their patients.

Last Wednesday was my first trip to the Drexel Square Froedtert Clinical Cancer Center. Travis drove me and was allowed into the waiting room, but not back into a room with me. They stated their policy that only patients are allowed (also the main campus's policy, but I know they've given up questioning guests and almost everyone there has a guest), and that they'd allow Travis that day, but not in the future. The first visit I needed platelets, and it turned into a long day because they had to get the platelets from Versiti and had a new courier who took over two hours to deliver them. The second visit I was dropped off and had to wait 25 minutes for Greg to pick me up. I asked a nurse if there was a more private place I could wait than in the waiting room, and she gave me a chemo bay chair (curtained off). Today I didn't even sit in the waiting room--the same nurse called me immediately back to wait in a chemo bay for my lab results. With very little exception (one man in the waiting room my second day with his nose out), everyone has been good about masking. And the waits are shorter than my extended drive time. It's just a lot less chaotic. Unfortunately, besides the delayed courier thing with platelets, they cannot do red blood cells same-day, so if/when I need those I'll either have to come back the next day or head to the main hospital to get them that day. And my biopsy and appointments with Dr. Atallah will of course be at the main hospital. Still, it is so nice to not be as freaked out over germs!

I did something that I hope I won't regret: got the whole family (except Cara) haircuts. My friend Denisa just started at a new salon and she and a coworker came in an hour early, masked, and didn't let anyone else in the shop. We all wore double masks (surgical with cloth over the top). Ash, Greg & Travis had been good sports about letting me cut their hair, but they all look a whole lot better now! As for me, I got two wigs trimmed/styled. I didn't realize that was something you were supposed to do! Maybe why I hated my last one so much? Anyway, all of this is to prepare for having family photos done later this month. Please cross fingers that it doesn't rain on August 27th since we're (obviously) doing outdoor photos. And Cara will be briefly in town.

I'm not completely sold on either of them, but it would be nice to have photos w/o sun glaring off my bald head!

I have continued to (slowly) bike and walk. I'd worked my way back up to a 13 mile ride, but this week (nadir) I'm more of a 2 mile ride person. Luckily I have people who will ride with me, no matter how short of a distance or slow of a pace.

Other than that, I'm just taking it a day at a time. That part is still a struggle for me, but I guess I'm getting used to it. I probably won't blog again until sometime next week (may not be right away on Monday, depending on what we know). Feel free to send positive bone marrow thoughts (which is actually negative, as in no leukemic cells or blasts) on Wednesday at 9:00 am during my biopsy.