Almost there

Sorry it's taken a few days to write. I've been waiting to get all the details I could. Also, I felt really awful all weekend without even enough energy to blog. Sunday night I had a fever high enough that I actually called in. It eventually dropped into the normal range, but I had that icky low grade fever thing going on.

Yesterday was a very exhausting day. My appointment wasn't until the afternoon and I was pretty sure I'd need both platelets and red blood cells. By the time we got to Froedtert at 2:00, I was wiped.

My WBC are zero.

My PLT were <5k (eek!  That explains the purple blotches everywhere)

My HGB was 6.7 (and that would explain why I could barely stay awake)

Unfortunately my blasts climbed up to 73%.

So I got a unit of platelets, a unit of red blood cells (they would have given me two, but the Day Hospital wasn't open late enough to get the second unit), and Dr. Atallah doubled my Hydroxyurea dose to try to drop my peripheral blasts.

Dr. Atallah said that the clinical trial looked good, but the team wasn't meeting until Tuesday morning. Tentatively admission would still be on Wednesday with treatment to start depending on when I went in. Luckily, they lifted some of the visitor restrictions this week, so it's back to one visitor being allowed for the duration of the stay on all but the bone marrow transplant unit. As much as I loved all the nurses on 9CFAC, I'd rather get to see Greg! So I'll be on either 7 or 8 CFAC.

I had read up about the previous iterations of the clinical trial and so (or course) I had a bunch more questions.

One of the write-ups of the early results said that they'd seen positive results in both "intermediate and poor risk cytogenetics." I asked Dr. Atallah if any of the "poor risk" patients had the tp53 mutation and he said yes, multiples. That's exciting!

So Greg & I headed down to Day Hospital where I asked if they could speed things up because our new dog was supposed to arrive at 7:30.

Unfortunately, my body didn't cooperate and when they did my pre-blood vitals, my temp was 100.2. They called the blood bank to hold the blood and waited for a return call from Dr. Atallah. When he called, he said they could give me Tylenol and proceed with the transfusions. 

The good thing is that the Tylenol lasted long enough to get me home and Kravitz's arrival was only delayed half an hour. But then I crashed! Luckily Ash did a great job with Kravitz last night.

This morning Travis and I took Kravitz to his first vet visit. (Poor guy has been through so much in the last month.) Kravitz is settling in well. Here's some obligatory cute photos (although the cutest stuff is when he flops down or stretches and yawns).

This afternoon I got a call that I needed a pre-admission COVID test, so I figured that meant I was in the trial. :) Basically I need to be negative for COVID and pass some other screening tests (labs, EKG, echocardiogram) and a bed needs to open up, but I should expect to be admitted sometime tomorrow!

I also got a call from the Clinical Trial nurse who walked through the consent form with me (other than signing it). She apologized for not having a copy for me to read through, but apparently they only finalized it this morning.

So I learned a bit more.

This trial (CLAG-M + lintuzimab) was supposed to have stopped with a dose of 0.75 uCi/kg (earlier trials were 0.25 and 0.50). However, the lintuzimab was so well tolerated that they asked the FDA to try dosing it at 1.0, and if that's safe, at 1.25uCi/kg. And I would be the very first person to get this dose of this combination. (I've always been a guinea pig :)) Other trials have used lintuzimab alone or with other chemo combinations at this dose, so it's not that I'd be the first person to get this high of a dose of the lintuzimab--just in this combination.

If all goes well, I get admitted and do pre-admission tests tomorrow. Thursday they would administer a dose of G-CSF, which is the "G' in CLAG-M. It is an injection that stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream, priming me for the chemo. This repeats for five days (and sometimes after the regimen to promote the rebound of counts).

Friday I start Cladribine (CL), which is a two-hour infusion and Cytarabine (A), which is a four-hour infusion, for five days. I also start Mitoxantrone (M), which is a 30 minute infusion for three days.

Then I take a few days off before a big, long day. In preparation for the lintuzimab, I start pushing fluids (drinking and IV) in the morning. Mid-afternoon (probably about 2:30), I will get one 30 minute infusion of the lintuzimab. Because it is radioactive, I will receive it in the nuclear medicine department. A nurse from the blood cancer floor must accompany me, and also watch me for two hours after. 

And then we wait!

The Friday that I receive the lintuzimab (October 2nd) will be our 27th wedding anniversary. I am reading this as a good omen. I am also somewhat excited about being the very first patient to receive this regimen at this dose. And I'm also choosing not to think about things that might come after (non-recovery of counts, etc.). The last few months have been really, really hard. And disheartening. But I think I had to get to this point. Two months ago I would have had a really hard time going back into the hospital again. Feel free to remind me of this when I complain in two weeks, but I am ready to return. I've got this hospitalization thing down! And Greg can visit. I can do this. :)

Whiplash!

Just when you think you know the plan, the plan changes.

As I'd written earlier, my breast cancer oncologist referred me to a leukemia specialist in an out of network hospital (Froedtert, for those in the area), not knowing that any other hospital system even offered treatment for leukemia. And lucky for me, through connections, I found excellent providers at Aurora St. Luke's. While there, I also learned that St. Luke's has been doing autologous bone marrow transplants (using your own bone marrow; usually for lymphoma) for years, but that they don't currently do allogenic bone marrow transplants (from a donor; to treat leukemia and myelodysplastic syndromes). However, with two new doctors on staff, who came from institutions where they did allogenic transplants, they are currently training nurses and will start doing allogenics in January.

However, as I began to connect with others in the area who are leukemia survivors, they all received treatment at Froedtert (obviously, as it's the only one in the area). And all raved and raved about Froedtert and pushed me to seek treatment there. And a few encouraged me to reach out to my insurance company to see if there was somewhere I could go where I wouldn't be one of the first patients receiving an allogenic transplant. I knew that my insurance would likely cover UW in Madison, but I just didn't know if it was worth a 90 minute drive for care. After all, being one of the first patients would certainly ensure a lot of observation, right?

Still, on December 19th, I decided to call my insurance company and see about maybe getting a second opinion from UW or another hospital that WAS in network and had more experience with allogenic transplant.

Unlike my first call in November where everyone hemmed and hawed and didn't think they could get me any information for 72 hours or more, this time I was connected with a Cancer Care Specialist familiar with my case, who was adamant that, with my particularly difficult type of leukemia, I needed to be seen at a Center of Excellence (COE) Hospital. They would pay for me to travel to any COE hospital in the country, but the two closest were UW in Madison, and the Mayo Clinic in Rochester. I pushed back and asked why I couldn't go to Froedtert, emphasizing how disruptive it would be for my family if I were treated or hospitalized that far away. The Cancer Care Specialist, in turn, reminded me that it was "only 90 minutes away." She said she would check with her leukemia specialist and get back to me.

Three hours later I got a call back that they learned that Froedtert had better transplant outcomes than either of the COE hospitals they'd suggested.  They were recommending that I get my bone marrow transplant at Froedtert, and they actually wanted me to immediately switch care to Froedtert and were looking into how to get Froedtert added to their Center of Excellence hospitals, as they were unsure why they weren't already. EEK!

And then there was a lot of waiting and letting things happen behind the scenes.

Yesterday I had an appointment with Dr. Hamadani who is the director of Froedtert's bone marrow transplant program. He was unaware that my insurance wanted me to transfer all care to Froedtert, so was only prepared to talk about the transplant being done at Froedtert. When I explained that I would be transferring all care, per my insurance, he said he would not be my oncologist (as he doesn't specialize in leukemia), but he would see if Dr. Atallah would see me. (Dr. Atallah, incidentally, is the doctor that all the local Froedtert patients I spoke with saw, and who they credit with saving their lives.)

I also met with the transplant coordinators and learned that Froedtert matches on more proteins/HLAs than St. Luke's does, so if my brother isn't a match, they'll have me re-do the cheek swab for more specific donor matching.

I had blood drawn and learned that Froedtert uses a different kind of picc line that only needs to be flushed weekly, so if care transfers there, I'd either need to learn to flush my own picc line or (their preference) have my current one replaced.

And my labs showed that I needed red blood cells (hemoglobin 7.0), so I was able to get that done at Froedtert instead of having to be driven across town to St. Luke's for the transfusion. So many new processes and procedures. It's interesting to see how a different hospital system does things. And another 8 hour day at a hospital.

Today was a morning of phone calls.

1.   I *still* have not received my mail order chemo (Venetoclax), although I should have started on it over a week ago. I am NOT impressed with the specialty pharmacy who didn't call St. Luke's to clarify the dosage (first holdup), or my insurance company to clarify coverage (second holdup), or me to get billing and delivery information (third holdup). After over an hour on the phone answering their annoying questions about how I was feeling about my diagnosis, they finally released the prescription to be delivered "Thursday or maybe Friday." Of course as soon as I learned this, another glitch happened (see below in #4).

2.    I heard back from Froedtert's transplant coordinator. Apparently my brother is NOT a match for me. I'm not sure why no one had told us this yet, but now we know. As mentioned above, I'll do another cheek swab to check for more features to match on. The coordinator has utmost confidence that I will get an unrelated donor match. A group of friends is currently working on setting up a Be The Match Event (bone marrow drive) in Milwaukee. When details on that are solidified, I will share them. Out-of-towners will be able to participate by mail, too. (I am moved to tears every time I think about this.)

3.   St. Luke's called me to see if I was changing providers or not. This was a really difficult phone call for me, as I have no complaints about my care at St. Luke's and all of the providers (doctors, NPs, nurses, techs, therapists) have been absolutely amazing. I know that I am not "firing" them, but am following my insurance company's preference, and ensuring that I get the best possible outcomes with the most experienced team. Still, it felt cruddy to tell them that I was moving to Froedtert.

4.   Froedtert made appointments for me to get my picc line swapped out (Thursday), to set up bi-weekly lab and nurse visits, and to get established with Dr. Atallah. But my initial appointment with Dr. Atallah is scheduled for the day after I am due to start round two of the Vidaza infusions. So I am trying to get that figured out, as I don't want to delay treatment. Froedtert wasn't aware of the start date for my next round, and Dr. Atallah is out today and tomorrow, so hopefully on Thursday that will be worked out. While making these calls, I also learned that Froedtert follows a different procedure to start taking Vinetoclax (including very close watching), and was informed that I should NOT start taking it until Dr. Atallah could review my file and guide me.

5. Froedtert does not routinely schedule visits with cardio-oncology (St. Luke's is well known for its heart care and does things more proactively) so I will keep my appointment for a repeat echocardiogram on Friday at St. Luke's. If that shows no damage, I believe I will only be followed if symptoms appear, but if it does show damage, then I'll need to figure out how to merge two hospital system specialists.

And I think that's it. It's so bizarre to me how there can be so much waiting and not doing a lot, and then BAM! everything happens in a matter of hours.

One round in

Today marks one month since this craziness started. Today was also a crazy long day of appointments at St. Luke's (Greg said it should count as an in-patient day since it was so long), but the best part is that today was day 7 of my first round of the Vidaza chemo. Although I still have frequent appointments (mostly for CBC blood tests), it won't be every single day.

Today started with an appointment in cardio-oncology. Since I have been on three known cardio-toxic meds (Adriamycin, Herceptin, and now Idarubacin), they will follow me closely to see if I look like I'm showing signs of heart failure. I had an echocardiogram done as my baseline before the Idarubacin, and everything looked good at that point (EF 57% and GLS -21, if you are interested in reading what the measurements mean).

So the plan is for me to have a repeat echocardiogram next week.
If there are no changes, then I'll repeat echos in six months and a year, and then annually for five years after treatment (with Idarubacin) is complete.

If there are small changes, then I will continue with echos every six months for a longer time and they will consider cardio-protective medications (ie: blood pressure meds)

If there are big changes, I'll need to do meds and be followed every three months.

The other thing we discussed relates to my QT interval. Three of the meds I'm currently on (fluconazole, the anti-fungal; levofloxacin, the antibiotic; and Zofran, the anti-nausea med) all can interact and impact the QT interval, which can cause an arrhythmia. I will have regular labs drawn to see if my salts are balanced, and I have to watch my symptoms, which are (of course) the same symptoms that are caused by my chemo and/or leukemia/low blood counts. Things like lightheadedness, shortness of breath, racing heart, fatigue.

BUT I did get good news--that I'm encouraged to keep exercising (biking!) and to just listen to my body and rest when it tells me to rest. Greg and I went biking yesterday (so he could try out his new fat tire bike) and a small hill was really, really tough. I had to stop at the top and catch my breath and slow my heart rate. But that's okay--and really due to the fact that my hemoglobin is still very low.

Next stop was labs. My WBCs are still at 0.8 (no neutrophil measures); hemoglobin still hovering around 8 (actually 7.8), and platelets down to 7K.

Then I met with Dr. Sana. He was surprised that I have not yet been able to start the Venetoclax, but it comes from a specialty pharmacy (in Michigan), and they were still working out the dosage earlier this week. Apparently the fluconazole that I have to take is a CYP 3A inhibitor and CYP 3A plays a major role in Venetoclax elimination, so if the two are given together, more Venetoclax is available and the dosage needs to be reduced to avoid over-dosing.

He also clarified a few things going forward.
1. He doesn't plan to do another bone marrow biopsy until 2-3 cycles of the Vidaza are completed.
2. I will be seen 3x/week between the Vidaza infusions for blood work and to determine if I will need blood or platelets.
3. I may not see a rebound in my blood cell counts ("hematological recovery") until three cycles of the chemo is completed.

After that appointment, I got my 7th Vidaza infusion in this first round. This also marks the end (fingers crossed) of needing Zofran, which makes me feel kind of fuzzy, until the next round of Vidaza at least.

And then I got platelets.

It was a long day, and I'm exhausted, but I'm pretty happy to not have to go back in until Monday, I hope!

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. :)

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!

Nearing the end of the first big step

Today's a big day. This morning they hung the final bag of my 7+3 chemo regimen. Unfortunately, each bag is a little more than 24 hours, so I won't be done till sometime tomorrow afternoon, but there is an end in sight!

Counts still dropping:
Total WBC 0.2
HGB 6.9 (after blood)
Platelets 19K

So moving the right direction, and I need more blood today.
I got a triple infusion machine to be able to do chemo, antibiotics and blood all at the same time! :)

The plan now is to let the chemo do its thing. It will hang out in my body and for the next week work at destroying my current diseased bone marrow. In a week, they will check the bone marrow and if there's zero blasts in it, we'll consider that a success and I'll be able to let my normal blood cells repopulate my marrow and blood, and take a break till we give it another hit in a month. That, to me, is totally doable.

Unfortunately today as I thought about what *should* happen and what I *hope* will happen, I went to the other side, which is "it might not work this first time." The good news is that there is a way to determine if it was not effective and there is a treatment protocol to do something if it did not. And that's going to improve the ultimate goal of achieving minimal residual disease. Here's a great handout on MRD in blood cancers, although I'm not sure why it doesn't include AML specifically. I *think* using MRD for AML is still evolving, so maybe that's why it's only in PubMed and not on the general L&LS or ACS pages.

At any rate, I obviously would love a complete response this first time through, which might actually allow me to go home for Xmas. So if you would like something to do over the next week, I invite you join me in visualizing the chemo trashing the shit out of my bone marrow. You can do it however you want. Here's an image of blood entering bone marrow, and the chemo is in my blood, so that can work:

You can imagine the chemo clearing everything that shouldn't be there in the blood throughout the body, including the bone marrow, and flushing it out of my body/kidneys (maybe a teenaged boy visual...)

Or you can make up a cartoon or imagery that helps you imagine what's happening.

Lots of people use pac-man visuals for chemo, gobbling up cancerous cells

You can imagine a warrior or a boxer or any number of violent cultural references.

Or you can use what I used to get through breast cancer chemo: Buffy the Vampire Slayer staking. I especially like this one because it's not just Buffy, but all those who love her fighting off the bad stuff. Also, when she stakes, the vampires go up into dust, which is just an awesome visual, I think.

If you think of another one, or had your own chemo visual during treatment, let me know!

Here's to completion of the first phase. Thank you all for following along.

Meds and tests and giving in to medicine

I thought I'd start by putting my numbers from my blood counts over the last few days here. Although I wrote about what the tests measure and indicate, I didn't give all the numbers I had. 

Copying from my last post to get the general range of numbers, I'll put in my numbers after. I have labs run every morning (between 3:30 and 6:00 am).

Total white blood cell count
Normal is 4.2-11.0
5.0, 5.1, 6.9, 4.1, 6.3, 5.4, 2.5, 1.1, 0.4

Hemoglobin
Normal is 12-15.5
They will do a whole blood transfusion if it drops below 7.0
8.6, 8.2, 9.5, 8.0, 7.4, 7.6, 7.8, 6.5

Platelets
Normal is 140K-450K, but mine have never been that high
They will do a platelet transfusion if it drops below 10K
23K, 21K, 38K, 22K, 20K, 18K, 15K, 10K, 5K

Absolute neutrophils
Normal is 1.8-7.7
They call it neutropenic if I drop below 1.5, and exercise additional precautions, including putting me on a prophylactic antibiotic; apparently once you're declared neutropenic, they stop running this and the blast percentage because the total WBC count is so low that it's really hard to get fractions.
1.1, 0.8, 1.7, 1.8, 4.3, 4.2, 1.6, 0.4...

Blast percentage
Normal is 1-5% in bone marrow, but none in blood; this goes along with the neutropenic marker and is no longer run after you go neutropenic.
42%, 28%, 10%, 2%, 14%, 12%

What this means is that today I will get a blood transfusion and also platelets. I am indebted to all who are able to donate, as it truly will save my life. I'm also a little bit scared as the consent form lists things that could potentially happen if you receive blood from another person. Still, I don't exactly have another option, so we'll do it!

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Last night was a rough night. As my blood cells dropped, I started to develop a fever. I also was ridiculously exhausted--to the point of not being able to keep my eyes open. It was kind of scary to be that out of it, but also strangely nice to not be able to do anything other than just sleep. My temp started to creep up into the 100's and I was warned that if it hit 101.5 they'd have to do all sorts of thing, including preventative antibiotics and a bunch of tests to make sure it wasn't an infection causing the fever. I have always been the kind of person who spiked fevers easily (My mom used to say, "you get a fever from a paper cut."). So part of me knew that this was likely my body reacting to all the crap being thrown at it. But it's still scary when they're doing all sorts of things, "just in case." And then my temp hit 101.8.

I spent over 12 hours drifting in and out of consciousness (sleepy-consciousness) while my vitals were taken over and over, I was given meds, and more blood was drawn and more other things sampled, and I got an X-ray in my hospital room...

At this point the urinalysis and the X-ray were both negative for anything, but it can take days for the blood cultures to come back. The longer w/o results, the better in that case, meaning nothing is growing. Again, I'm hoping it's just my body and the way it reacts to any trauma and not another thing to have to deal with.

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I asked my nurse this morning to go over all the meds I'm on, and explain them.  Here we go:

Idarubicin: chemo given daily for 3 days; done with this one
Cytarabine: chemo given around the clock for 7+ days (there's some extension of time with the IV bags and changes of lines and such, so it ends up being over 7 days; I'm still getting this one and it is due to end sometime on Saturday.
Posaconazole: oral med that is an anti-fungal
Allopurinol: oral med to decrease uric acid, which can increase with the chemo as cancer cells die, and it ultimately protects my kidneys
Ondansetrone/Zofram: anti-nausea meds given in my IV
Cephapine--IV antibiotic given when neutrophils drop
Vancomycin--second IV antibiotic added when my temp went over 101.5
Femara/Letrozole: the aromatase inhibitor that I have been on for four years already
Calcium/Vit D.: vitamins I've taken for a long time
Acyclovir: Anti-viral that will be added when the chemo is done

I was taken back 25 years when I was writing my birth plan and was ADAMANT that I would not get an IV placed because it was too invasive. I didn't want pain meds for labor or pitocin for induction. I wanted to trust my body to de exactly what it was made to do.

It's insane to think about that now. Central lines, additional IVs as needed, a med list that I can't remember and have to write down. Everything going into me and coming out of me being measured... What I wouldn't give to just have to defend my birth plan now!

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I'm gearing up for another day of hard work. I need to try to walk or otherwise exercise since I barely did anything yesterday. I'll have 1-1.5 hours of platelet transfusion, then 2.5-3 hours of blood transfusion. I'm tired, but I'm not so completely exhausted as I was yesterday. I have been told that it will get worse before it gets better, and I'm still moving forward. Two more days of chemo, and I just keep checking things off the list.


While it's been nice to see people, it really wipes me out, so please don't be offended if you ask to visit and I just can't do it. It's taken an inordinately long time to be able to type this blog post since I'm super easily distracted. I had thought I'd be able to keep up with work while I was hospitalized. While I can do tiny bits, I can't sustain thoughts or plans. So I guess resting is where it's at. (And walking. So much walking.)