Four out of five granulocytes transfusions completed

 First off, thanks to all of you who reached out over the last few days, but I didn't reply to at all. I was barely able to look at my phone much of the time (but I'll get to that), but I read them all in bits.

Today during my MRI (I'll get to that, too), I tried to get through it by writing my next blog post in my head. And then I got back to my room and was visiting by the doctor on rounds this week (Dr. Michaelis), who is wonderful, but told me something. She told me that she knew that all of this stuff with the granulocytes was extremely stressful and that it hits at the core of our "fight or flight" response. But she needed me to stop obsessing (that's not what she said) about everything about this treatment--counting and self-rationing meds, worrying about fevers, etc. And she said that I should trust that my team is on top of things and they will let me know when they need my input. She also said that I am, despite these big set-backs, a very healthy person (my heart, lungs, kidney function, etc.) and that the granulocyte transfusions seem to be working. I should trust in the process. Also, I should use the meds that are available to me and not suffer.

So with that being said, I'll work back to my difficult couple of days. First of all, it was finalized that I would receive a total of five granulocyte transfusions. The first two (Friday, Monday) came from one donor, and the other three (Wednesday, Thursday, Friday) will be from a different donor. Each has had an expected arrive time, and they've all been wrong. :) It just makes it a little hard to plan things like other IV meds when they're expected at 3:00 but don't arrive till 5:30.

I described in detail the Friday infusion. The others (so far) have not been that intense, but have been more "classic" granulocyte transfusion reactions. For me, that means high fevers and rigors. I've gotten enough pre-meds (after the first two times, they added a steroid) that the actual infusion goes fine. But afterwards it's a mess of fever-med-fever-med cycling. Every day we learn a little more and are better able to deal with it, but it has left me with days where I'm either feverish and really uncomfortable, waiting for the next dose of meds, or I'm doped up because I just took meds. So I've been out of contact quite a bit of that time. I will probably be mostly out of contact the next few days, too, as this all works through my body. But I am hopeful that it is working, and grateful for the medications that allow me to handle it all.

Last bit on the MRI: I woke up Saturday with a very sensitive spot on my left ankle where it meets my foot. It hurt to even wear socks! I mentioned it on rounds, and it came up again the next day. So to "rule out that the fusarium has impacted the bone," I got an x-ray of that ankle. It didn't show anything definite, and had some comments about possible previous trauma (I'd sprained it before), but I wasn't worried. Then yesterday the who thing was again sensitive, but the area was reddish and warm to the touch. Thus the MRI. I don't have results from that yet.Essentially I'm just hanging in here, taking it one day at a time. I'm trying really hard to relax and just get through. I've been using some meditation and some essential oils. And I'm also really happy that tomorrow is my last one of these. :)

And then it all comes crashing down

I was feeling pretty good mentally after the weekend and making it through all steps in the clinical trial. I was growing tired of my hospital stay--the food, the boring lap-walking, being mostly stuck in a single room. But I did have this strange red spot on my forearm that hadn't been much of anything, but my hospital bracelet poked it constantly and it was getting irritated, so I told my nurse about it. She decided it was worth mentioning to the doctor, and that's how I won myself another punch biopsy from Dermatology. Dr. Carlson didn't think it was necessarily a concern, but it looked different from the earlier lesions I'd had (they were flaky and peely but not painful), and then we started looking elsewhere on my body and found at least half a dozen of them. I remembered that I had actually entered the hospital with a similar spot on my left thumb, which was unique because it had a sort of "head" on it, and I didn't remember bumping it anywhere. I asked Dr. Carlson what it could be and she said it could be another generic "dermatitis," it could be something called Sweet's Syndrome, but what they wanted to rule out, which would be very dangerous, was a fungal infection. I stopped complaining about needing another invasive procedure because my friend Kelly's son Logan died from a fungal infection after his bone marrow transplant. I definitely wanted to rule that out.

Tuesday morning the Dermatologist popped in to say they didn't have news yet, but they were thinking it was Sweet's Syndrome.

Tuesday afternoon two dermatologists came in my room and as they were talking to me, Dr. Carlson came in. Unfortunately, the biopsy showed a fungal infection. They don't know exactly which, but that it is a "septate hyphae" fungi, likely either Aspergillis or Fusarium. They explained that they'd contacted Infectious Disease, who would meet with me to explain some things.

I'm not going to mince words. This is really, really bad. You can try to prevent fungal infections with anti-fungals (I was on many, but had to go off for two weeks to protect my liver), but you cannot CURE a fungal infection with them. The ONLY way to cure this is to have neutrophils to fight it. And my clinical trial has a known prolonged recovery time--meaning at least three weeks and likely more since I'm on the step-up dose. Anti-fungals will probably not be able to hold back the infection that long. The likelihood of my body producing neutrophils in time is slim. 

This is very possibly how my life will end.

Apparently a fungal infection in a severely immunocompromised person is a Big Deal, as very quickly I had numerous specialists in my room, back-to-back.

Almost immediately after, Infectious Disease came to see me. They are continuing the Voriconazole which I'd resumed taking when my liver function improved from the Myelotarg, but they also added an IV anti-fungal called Amphotericin-B. I will receive that once daily, and it's side effects are chills and rigors. They pre-medicate with Tylenol and Benedryl.

The optometrist did a full eye exam in the room. My eyes have been very sensitive to light from the cytarabine, plus I have eyelid swelling that started Friday. When he dilated my eyes and then shone the bright light in to look at the back of my eye? That was excruciating! And my eyes stayed dilated and extremely photosensitive until today. Ugh. He said my vision is normal--maybe needing a slightly stronger prescription in the right eye--and the thing on my left eyelid is a stye. (Now I just heard that ophthalmology is coming back to look at my eyes again. I will be again be dilated and not able to write, so I'm just going to hit publish. I don't know that I'll be able to view screens any more today.)

Echo came into the room and did ANOTHER echocardiogram to check for fungal growth on my heart valves.

Ear, Nose & Throat (ENT) were next. They looked in my ears and at my throat and then they stuck a camera in my nasal cavity toward (into?) my sinuses. This, too, was really, really, really awful. The ENT actually wanted to go back in the right side because she "saw something concerning," so I had three of these.

Then Infectious Disease came back in and talked more about Fusarium. He's only had one other patient all year infected with it. He had AML. He died. (I wanted to know.)

Then I went down for another CT scan of my sinuses to see if they have worsened.

I started the Amphotericin, and the pre-meds worked. However, when they wore off, my temp rose to 101, which delayed my receipt of platelets and won me more blood cultures!

This morning I was woken up by ENT to scope my nose again. Still really bad. And I just learned that they're going to do it again tomorrow morning. They're looking for changes indicating fungal growth, and if they find them, I get a trip to the OR so they can scrape it out of my sinuses.

I then had several visits from "the team" (Dr. Carlson and her PAs, med students). A plan of sorts emerged, although everything still depends on so much that we don't know yet.

1. Infectious Disease stopped in to let me know that the culture shows that it is, in fact, Fusarium. 

2. I had a chest and abdomen CT scan today to see if there is any sign of a localized fungal infection in either of those. I am getting daily nasal scoping to look for progression in the sinuses. 

3. I'm using wetting drops for my eyes, plus two ointments.

4. I'm receiving Neupogen (GCSF) shots daily. These boost neutrophils a day or two before they'd naturally appear. Since we don't know when/if my marrow will recover, I guess it's one more layer of possibly speeding up their appearance.

5. Dr. Carlson is looking into the possibility of a granulocyte infusion. I didn't even know that was a possibility. This website explains it really well. Basically the best match is both blood and HLA matched and it's not guaranteed, and it's got icky side effects. The ID doctor seemed to think that unless I took a turn for the worse and it was truly my last option, waiting for count recovery might be better. I'll let them figure it out.

After all that, I'm just going to say that this sucks. I am so very sad about it all and yet I have not completely given up. I'm just afraid I'm a lot closer to that last goodbye than I'd hoped.

And now we wait

 Thank you, everyone, for sending leukemia blasting thoughts, prayers, etc. on Friday. I felt completely surrounded with love. The procedure itself was almost anti-climactic. I was transported down to the nuclear medicine area and set in a very small (tight quarters) bay. Due to the clinical trial, I had to have a nurse with me throughout, and she had a new trainee, so he came, too. Then there was the nuclear med specialist and her assistant. They brought out a capsule that looked somewhat other-worldly and had radiation symbols on it, but the only precautions they took were wearing gloves. It was explained that this antibody emits alpha radiation, which is essentially stopped by almost anything (gloves, plastic, paper). They took out a giant syringe filled with a yellowish liquid and inserted it into a machine that dispensed the contents over 30 minutes. The machine was connected to one of my PICC lumens, and that was it. My vitals stayed great throughout (and for the hours afterward that they had to check). I didn't feel anything or any different (actually, I felt better because one of my pre-meds was Tylenol, but I'll get to that later). And now I spend any downtime visualizing my leukemic cells getting toasted by this amazing antibody.

Now I'll go back to a bit before the lintuzimab infusion. Thursday night after Greg left, my nose just started running like crazy! I couldn't even knit because it was dripping that quickly. I also felt like I had some sinus pressure on my left side. That seemed strange because I end up with sinusitis almost every year and it ALWAYS hits my right side. I could still breathe, but I slept with kleenex under my cheek all night. When I woke up on Friday, my left side was even more sensitive across the bridge of my nose and I couldn't stand the sunlight. When I was brushing my teeth, I looked in the mirror and my left eyelid was red and swollen. So I called the nurse, who talked to the doctor, who came to visit me, and (of course) wanted to rule out things, so I got a sinus CT scan (showed low grade sinusitis) and a nasal and throat swab for every virus known to man (all negative). The verdict was that it was likely due to the Cytarabine (the A in CLAG-M), which is the drug that can cross into the nervous system. I'd been getting prophylactic steroidal eye drops, but they stopped on Wednesday. Dr. Carlson said she'd order a stronger steroid eye drop to use until the redness went away and for a few days after. I felt almost immediate relief when using the drops. I had spent most of the day both Friday and Saturday either asleep or with my eyes closed (or keeping the left eye covered if I needed to look at things). It was a rough few days, but I am happy to say that this morning I woke up feeling MUCH better. You know how it is when you feel so cruddy for so long that even a tiny improvement makes you feel like you're on top of the world? That was me today. Chatting with friends, walking the halls, taking a nice long shower....

I know many of you have asked when we know if this regimen is working. We won't know for several weeks, and it won't be until a bone marrow biopsy. I was tracking my blast cell percentage in the peripheral blood, but my WBCs are 0.1, so they can't do subsets of the WBCs and therefore I can't check blast counts. The big thing now is recovery of my marrow ("my" marrow actually being my donor marrow from May--the healthy stuff). I know that those who did this regimen with lower doses of lintuzimab had very delayed cell recovery. My doctor says at least three weeks (not sure when the three weeks counts from). If it doesn't recover after 40 days, I'll need more new marrow. So there's a lot of waiting without knowing anything. I know I don't have to be fully recovered to be discharged, but I do need to be less transfusion dependent (I've gotten blood and/or platelets every other day I've been here). So I wait, and try to be patient.

I have been so lucky to have Greg able to visit me every day. Even on days like yesterday where I laid curled up in a ball, protecting my left eye, and barely interacted with him just knowing he was there was amazing. Friday we made the best of our anniversary that we could. I had all those icky sinusy symptoms and didn't know if it was a cold or something else, but we got permission for him to pick up Vietnamese food. He had a Bahn Mi, and I had a specially-prepared giant bowl of pho (vegetables pre-cooked; no raw ones; extra hot broth). It felt somewhat normal in a strange way. The kids did a Zoom dinner with us, and it was a great way to mark 27 years of marriage. 

Today we played cards and shared a "cheese platter" from the cafeteria. We make our own special times. And we keep hope alive. I've started thinking about the future more than I have since last November. It may well be premature, but I'm rather enjoying it. Here's to 2021 being healthier and less pandemic-y. And really, why not more cheese-y?

Time for the big guns!

When I checked into the hospital last week, I was told that I would likely start to feel the effects of the chemo on Day 7.  They were right!

Last night I just felt generally yucky. My nose was runny and my head was stuffed up. I expected to have a low grade fever (I can usually tell when my temp is in the 99's) and I did--which meant that I had to be monitored more closely all night. They stopped the steroids, so I am having a bit of a steroid dip. My stomach isn't terribly upset, but it's just not right. And I am just exhausted! Today it was difficult to even sit up in bed--I was a puddle. All of this is to be expected, so no concerns. You just forget how cruddy it is until it hits you again.

I didn't need any blood products today (my hemoglobin even ticked up a bit on its own), and my liver function tests continue to drop. Unfortunately my blast percentage inched up a little more again. Dr. Carlson said not to worry--that tomorrow's Lintuzimab is what should knock things out.

So that brings me to tomorrow. This is it! If you light candles, send positive light, pray, whatever, then I can use all your directed energy tomorrow afternoon. The tentative plan is for me to get pre-meds about 1:00 tomorrow afternoon, then go down to nuclear medicine with a dedicated nurse to monitor my vitals. I'll theoretically start the half hour infusion at 1:30 (depends on exactly when the med is mixed), and will be monitored closely for at least 90 minutes. In preparation for the infusion, they'll start IV fluids at midnight tonight (the lintuzimab is hard on kidneys) and I'll have them throughout the infusion and through tomorrow night. It'll be a long day, and I expect I'll still be feeling pretty icky (much like today). But I am excited to get this part done so I can start my recovery from it. 

Thank you again for all your well wishes. I plan to kick it big time tomorrow afternoon and hopefully get through to the other side. I know it won't be easy even after this infusion, but it's what needs to be done. Let's go!

The steroids are kicking in!

 I'll try to fill in what my past two days have been like.

I slept amazingly well my second night here (Thursday night). I still had the usual hospital interruptions but was awake just long enough to be cooperative and then fell right back asleep. I think I was in bed with the lights out for between 9-10 hours.

Yesterday morning I started the day needing platelets (down to 8K) and blood (HGB at 6.3), but was thrilled to hear that my peripheral blasts had fallen to 63% (they'd been as high as 81%), so doubling the hydroxyurea seemed to help).

I started the chemo portion of the clinical trial yesterday afternoon. About 1:30 I got pre-meds (to prevent nausea and infusion reactions; this includes the steroid that is given with some chemos--my first experience was with the AC chemo during breast cancer). About 2:00 I got the first med--the "M" in CLAG-M (mitoxantrone). This med is bright blue (see photos below). For those that knew Greg and I when we got engaged (or who have heard the story), you might be amused that Cara's response to these photos was, "did you just ask for something blue?"

About 2:30 they started the Cladribine (CL) which ran for two hours. No biggie there. I napped through part of it.

Then I had to take a two hour break. I ate dinner, played around on my phone, took a few walks in the hall.

The Cytarabine (A for Ara-C) is the real deal. It is known to cross the blood-brain barrier and cognitive issues are the first sign that there might need to be a dose decrease or to stop treatment. Cytarabine is actually the first chemo (the "7" in the 7+3 regimen) that I was given at St. Luke's in November to attempt to first achieve remission. But this is a stronger dose and not given 24 hours a day, so more intense. I started protective prednisolone eye drops and take them twice a day to hopefully prevent vision problems. And every night before giving me the Cytarabine, I do a bunch of cognitive function test. I need to write my name on a page that tracks my handwriting. I need to say the current date, approximate time and where I am. I have to do strength tests (squeezing nurse's fingers, pushing and pulling with my feet and arms, rapid back-and-forth motions with my hands, tracing a pen with my eyes, and touching a pen, then my nose, using both hands and as the pen is moved).

I haven't had any terrible side effects from this chemo yet. The "worst" is my reaction to the G (GCSF) injections. I have swollen up terribly at the sites where the injection was given. It's thought that because I lost so much weight (and the injection goes into the fat), it's going more into just skin and that's causing the swelling. We tried my butt cheek tonight (instead of my belly) so maybe that'll help.

Last night I fell asleep pretty well after my 9:00 meds. My nurse said the Cytarabine would be done about 11:30 and she'd sneak in, turn it off, do my midnight vitals and labs and let me sleep a bigger chunk. I woke up with a start at 10:30 and couldn't fall back asleep. I felt clammy but not necessarily cold or chilled. Even after the midnight vitals (no fever, despite the clamminess) and labs, I just tossed and turned, and heard all the sirens coming, and got chilled and then overheated, and let my mind race where I talked myself into every symptom being a sign that this regimen was not working and it was my last chance. My heart was pounding and when I tried to pick up my phone to play mindless games, my vision wouldn't focus and I just KNEW that meant that I'd have to stop this treatment. And then from some depths of my brain, I remembered that I'd had steroids earlier in the day. When the nurse rounded for 4:00 am vitals, I asked if my symptoms were possibly from the steroids and she said, "oh, yeah--you developed the ‘roid rage!" Just hearing that made me relax and I was able to sleep for about three hours before getting up for 8:00 am vitals.

The doctors rounded pretty early today. 

Dr. Murthy came and said that my total bilirubin levels have been increasing and they wanted to run some additional labs. The total bili level can be broken down into direct bili and indirect bili. If indirect, it's likely caused by red blood cells breaking down (chemo trashes blood cells and we'd upped the hydroxyurea). But if direct, it indicates an issue with the liver--potentially a blockage of some sort, which can indicate veno-occlusive disease (VOD)--a much bigger deal. VOD is a known risk after taking Myelotarg, and also after having a stem cell transplant. Rates of this happening are still only about 20%, and I don't have any of the other risk factors (history of alcoholism, prior hepatitis infection, prior liver radiation), but it's still a concern. They ran labs on the breakdown of direct/indirect bili. If direct is elevated, the next step would be a liver ultrasound. More waiting and more potential tests... 

Before he left, I asked if I could get a prescription for something, if needed, to allow me to sleep at night with the steroids kicking in. I asked for Ativan, since that had worked at St. Luke's. Best of all, it's as-needed, and fast-acting, so I don't have to take it unless I need it.

I was surprised when Dr. Hamadani popped his head in the room. I didn't even know that he did hospital visits! He said he was excited about this clinical trial and he'd hoped I'd gotten into it the last round when they were accepting patients. He said if I go into complete remission with no MRD, and count recovery, the plan is to just watch and wait. He said he'd preferably give me a donor lymphocyte infusion (DLI), but since my donor isn't available, that's not an option. If I get into remission, but counts don't recover, the plan would be another bone marrow transplant from a different donor. He said it takes awhile to get a Be The Match search launched, so he would start it now "just in case" and not to be surprised if paperwork came in from my insurance to approve the second transplant. I asked about the haplo donor that Dr. Murthy had mentioned and he said his preference would be another perfectly matched unrelated donor from the registry. I said something about there being other matched donors internationally when I had my transplant, but with COVID they went with the domestic donor, so I wondered if they'd opened it up to international again. He said that they had and that he preferred European donors (I think because culturally it's so much more normal there!).

The hem/onc fellow came in about 10:45  to tell me that my direct bilirubin IS elevated and that they wanted to repeat the test to see if by chance it's on its way down. If not, they'll want an ultrasound. She said it's possible that I had a gallstone briefly blocking things and it may have already passed, or maybe if they find one, they can scope it out. 

Two hours later she came back to tell me that the latest test showed that my bili numbers went down. They don't see the need for an ultrasound yet, but they'll keep watching my numbers and if they tick up again, I'll get that ultrasound! (C'mon bilirubin!)

And then I started round two of CLAG-M. That's where I am now--with about three hours left in the A part.

I'd mentioned that I was struggling drinking enough as water didn't taste great and that very few of the beverages on the hospital menu that were appealing. My nurse asked if I wanted a little fridge in my room to bring stuff from home. Heck, yeah! So here's my fridge.

I then got greedy and asked if I could bring a little microwave in (a friend offered one). But I can't have "heat-producing items" in the room (so I assume that means no crockpots or electric kettles or hot plates, either). But I now have good Gatorade flavors and string cheese in my room!

And I was able to take pictures out of my window for those who asked how to visit and wave to me. I'm not sure if you can see anything in my window from the road, but if you text me and I'm in my room, I can stand in the window and others have been able to see me. :) I'm on the fifth floor. I'm on the south side of Froedtert (where the ponds are) off of Doyne Ave.

Thank you all for your continued well-wishes. I'm going to ride the steroid high (energy and increased food intake!) for at least a few days. I'm sure I'll do quite a crash by mid-week next week, just in time for the experimental part of the treatment on Friday. Love to you all!

First full day

 I barely slept last night and had a tough time napping today, so I'm exhausted and will go to sleep as soon as they bring my night time meds. So this post is more of bullet point list than a blog post. :)

6:30 am: I was woken up to head down for my echocardiogram. Luckily since they already had a baseline from April, it only took 15 minutes (not 45) this time.

7:30: Back to the room for vitals, ordering breakfast, discussion of meds, including whether I can take Claritin (and stop the Zyrtec) to help with bone pain from the G-CSF (Neupogen) injections. I can.

9:30: PT came in to do her initial evaluation, show me the floor and set goals.

10:30: Dr. Abedin and his team did rounds to have me sign the paperwork for the clinical trial. Still waiting on screening results before it's official. He discussed lots of things about the clinical trial, but the main things included

• The CLAG-M is the main part of this therapy. It is a salvage chemo, which is used when people either fall out of remission or have refractory leukemia (have never truly gone into remission, which might actually better describe me) and it alone has about a 50% success rate. This trial is adding the lintuzimab to attempt to get any cells that make it through the CLAG-M, thus hopefully increasing the success rate.
• He explained how Myelotarg is a monoclonal antibody that works by connecting to a CD33-expressing cell, injecting calcheamicin (essentially a DNA interruptor), which must make its way into the cell's DNA and reprogram it to commit suicide (apoptosis). However the lintuzimab (actually lintuzimab-Ac223) is also an antibody, but it is connected to the radioactive isotope of Actinium and once it attaches, it destroys the cell in fewer steps.
• I am the first receiving this higher dose of lintuzimab  and so they would not be surprised if I take even longer for my blood cell counts to recover, or if they don't recover at all.
• He defined "too long" as no recover after 40 days. Up to this point most people achieved count recovery in about four weeks.
• I should expect fevers of unknown origin in week two.
• If my counts are starting to recover, but not fully recovered, I might be able to go home before full recovery and complete my treatment outpatient.
• Dr. Abedin asked if Dr. Atallah and Dr. Hamadani told me what would happen if my counts didn't recover. I said that they'd just said they "had things to do." Dr. Abedin explained that no recovery of counts means that I have no remaining donor bone marrow and so they'd need to get healthy bone marrow working. I told him that my donor was not available anymore and he said that if I didn't have any of her bone marrow left, I'd be able to accept another, different bone marrow. That could be another matched unrelated donor, or it could be a haplo-donor (sibling, parent or child).
• Other very real risks from this procedure include kidney damage, as the lintuzimab is eliminated through the kidneys and can do damage on the way out. I've already started taking protective meds, and as I'd said earlier, on lintuzimab day (10/2), they will pump me full of IV fluids, make me drink like crazy, infuse me, and continue pumping me full of IV fluids after.
• The last thing Dr. Abedin said is that for the study they'd be drawing an additional tube of blood to test for single nucleotide polymorphisms (SNPs) in the CD33 gene which might explain why meds like the lintuzimab-AC223 or Myelotarg, which target CD33, aren't effective in some people.

After lunch, I took a nap and then OT paid me a visit. She gave me some exercises and did some baseline screenings on cognition. I was able to take the Montreal Cognitive Assessment (that test that President Trump bragged about acing—person, woman, man, camera, TV). I was horrified that I didn't score perfectly (at the end of the test I could only remember four of my own list of five words). But I passed and the other motor skills tests went better. :)

I got an in-room EKG.

4:30: My nurse came in to give me three meds--one to protect my kidneys, steroidal eye drops, and a neupogen shot. I asked if that meant I was in the trial and she said yes--Dr. Abedin had just received all my screening tests and signed off.

And now it is 10:00 pm and I have to crash. Forgive me for any typos. I'll try to fix them tomorrow.

I will finish with the address to send me cards (NOT needed, but lots have asked):

My name

Room 5

7CFAC

9200 W. Wisconsin Ave.

Milwaukee, WI 53226

Thank you, dear friends, and goodnight!

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. :)

C'mon Clinical Trial!

 Unfortunately it's not a particular great day here.

After two treatments, it's obvious that the Myelotarg is not working. My peripheral blasts are up to 74%! That is WAY higher than they have ever been before. And Dr. Atallah came to visit me in the day hospital, so I knew it wasn't good.

My other counts aren't much to write about.

WBC: 0.8; ANC: 0.01; HGB: 8.2; PLT: 8k; 

Liver function tests are still elevated, but not as high as two days ago: AST & ALT both 139

I have been getting platelets about every other day, both because the leukemia has completely taken over, and any meds I'm getting impact platelet counts first and the other blood cells later.

They are discontinuing the Myelotarg. I started on a new oral chemo called Hydroxyurea in hopes that it will knock down the blasts and buy me time to hopefully get into the CLAG-M + lintuzumab clinical trial. Dr. Atallah said that it has made it through FDA approval and just needs internal Froedtert approval. As a reminder, this is the third increase in dosage in the Phase I trial. Phase I trials are only used to determine if a regimen is safe to administer to patients. Therefore, every patient gets the treatment. This is the highest dose they plan to give in this regimen. Thusfar the lower doses have had excellent results, which you can read about here or here.

I will hopefully enter the hospital next week. I’ll likely be on 7CFAC and they’re working to allow visitors. I'm not sure if it will be like last time where I can only have one visitor for the duration of my stay, or if they will allow multiples. I'll certainly let you all know when I find out.

Straight talk:

This is quite likely my last chance. Furthermore, by increasing the dose (clinical trial), it’s possible that my counts won’t recover (Dr. Hamadani has ideas on how to remedy that, but it’ll mean a much longer hospital stay—closer to two months.) Still, I'm trying to be as positive as I can. The results in even patients with high risk cytogenetics has been pretty good. The cool think about the lintuzumab is that it is not chemo, but a radioactive element that works even on leukemia that has burned through several chemos. Since this is a Phase I trial, it's only looking to determine the maximum safe dose, and therefore what happens after the treatment is up to the doctor's discretion. So as long as I survive the CLAG-M + lintuzumab, Drs. Atallah and Hamadani can do whatever to keep me in remission (or treat me in other ways, I guess). That's hopeful.

Since I may not get out of the hospital until Thanksgiving time, I guess I’ll try and pack in as much outdoor, fun stuff as possible the rest of this week!

And I sure hope this treatment works.

p.s. just to end this post with a happy thought, here's a photo of Kravitz that his foster mom sent. I will hopefully be in the hospital before he gets to join our family, but we're trying to arrange a play date this weekend so I can store up some Kravitz love for the hospital stay.

Day +111

Well, it's not GOOD news, but it's not the worst news, and (as usual) once I have a plan, no matter how tentative, I feel better emotionally. 

Blood counts:

WBC: 0.3 (remains so low); HGB 7.3 (dropping); PLT: 56K (woot!)

We knew the news wasn't good by the look on Dr. Atallah's face when he came into the room. Greg immediately pulled his chair closer to me. I think both of us were thinking, "plan for hospice." Luckily we're not there yet.

However, as I had expected, this regimen of chemo is not working on my leukemia. In June, I relapsed with 0.6% blasts in my marrow. Last month they were up to 5.6%, and this month I jumped to 17.1%. Definitely not working.

So the BEST case scenario is a possible clinical trial. I'd mentioned it twice before. It was in early stages back in April when I first fell out of remission pre-transplant. At that point, the trial was Phase One, lower dose. Then, when I fell out of remission post-transplant, it was mentioned to me, but was not currently enrolling. Now the trial is in the ramp-up phase, going from 0.75 ug to 1.0 ug. They FDA has apparently given oral approval, but not yet written approval, which could take a few weeks. Dr. Atallah said that they have seen "very promising results" at the lower dose. He also said that a wait of two weeks might be emotionally concerning, but is not medically concerning.

As a reminder, the clinical trial combines CLAG-M (which is the standard of care for me at this stage) with lintuzimab. CLAG-M is cladribine, cytarabine and filgrastim with mitoxantrone. Lintuzimab is an anti-CD33 antibody with a radioactive portion attached. Some AML cells express CD33, and the lintuzimab seeks them out and destroys them (cool, right?). Last go-around we didn't know if my leukemic cells expressed CD33, but today Dr. Atallah said that they express CD33 "very strongly." This is definitely good. This treatment needs to be done in-patient. If you click on the link above, you'll get specifics, but the treatment itself is 5 days, but then a total of 3-4 weeks (or more) in the hospital because it REALLY knocks down blood counts and a patient is extremely transfusion-dependent and neutropenic, much like my initial 7+3 regimen back in November.

Right now that is my utmost hope: getting into the CLAG-M + lintuzimab clinical trial. I welcome any positive thoughts that way.

Unfortunately I have two other issues that I'm dealing with, which could possibly prohibit me from qualifying for the trial.

Last week I noticed what I initially thought were bug bites on my calves. I've gotten more, but they are strange. They appear bright red, but the center of them is a different texture. And after a few days, the top layer of skin just peels off and leaves me with a slightly-darker skin tone in the shape of the spot. Dr. Atallah is sending me for a skin biopsy. It could be leukemia cutis, which would only tell us that I have leukemia, and we already know that! It could also be a form of graft vs. host disease. Leukemia cutis wouldn't disqualify me from the trial--I'm not sure if treatment for GVHD would or not.

The scarier symptom is that I've been getting shocks down my legs for the last week or so. At first it only happened when I was biking or walking but now it sometimes does it when I'm sitting. This could be a sign that the leukemia has travelled to my spinal fluid. Dr. Atallah quickly reassured me that there were treatments if that were the case, but before I could even ask, he said that it might disqualify me from the clinical trial.

So tomorrow at 7:00 am I have labs, followed by a blood transfusion, and then at 11:00 a lumbar puncture to check for the presence of leukemia in my spinal fluid. I'm not sure how long it'll take to get those results, but I'll let everyone know when I know.

If, for whatever reason, I'm not eligible for the clinical trial, there are still options. Essentially, I'd drop down to "just" CLAG-M. This would still be in-patient for 3-4 weeks.

So there's a lot to unpack. There's a lot of very scary stuff. But I guess my prime take-aways are thus:

1. I appreciate positive thoughts for a clean (negative) lumbar puncture tomorrow

2. I appreciate finger crossings and hopes that I am able to get into the clinical trial 

3. I am thankful that I will get at least a little time at home, without any chemo, in hopes that my blood counts can recover before the next onslaught

As an add-on, I really need to figure out a way to put on weight and get stronger again. This month of chemo and leukemia ickies have made me extremely weak. That's no way to fight this beast or make it through another rough chemo regimen. Feel free to remind me (via text or messenger) to eat something or do some squats or wall pushups!

Thank you. Love you all, and know that I appreciate all the positive vibes you'll be sending my way for this next bout. XOXOXO

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.

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.

Not the results I'd hoped for.

After days (that seemed like weeks) of waiting, the results of my bone marrow biopsy and the final genetic testing results (next gen sequencing) of my leukemia both came in on Tuesday afternoon.

The first hope, that the bone marrow would be hypoplastic ("empty") and that the blasts would be under 5%, was not met. I have between 15-20% blasts still in my marrow. I had started with 40%.

This was not completely unexpected, as some of the genetic information came out over the last few days. If what was suspected was true, the 7+3 chemo was not a good match for my particular leukemia. While this is frustrating, I was in a bad enough condition upon admission that *something* had to be done, and so it wasn't a terrible idea to start with the 7+3. (Apparently some cancer hospitals do hold off on any treatment until they get the results from the genetic testing.)

Leukemia is not staged like other cancers. Instead, one of the ways it's grouped is by the favorability of the outcome. Best is "favorable;" worst is "unfavorable" or "adverse;" and in between is intermediate. These are the best guesses as to whether the leukemia will respond to chemo and go into remission. And remission must be obtained before a bone marrow transplant is attempted. (If you leave leukemic bone marrow and put new bone marrow in, they'll compete and the leukemic bone marrow will eventually win.)

My leukemia, unfortunately, has a lot of unfavorable things going for it.
1. Being treatment-associated AML (t-AML) automatically makes it less favorable
2. Having greater than three chromosomal mutations is unfavorable; my leukemia has fourteen(!)
3. One particular gene deletion is highly unfavorable--p53 (involved in signaling for such important things as cell cycle arrest, apoptosis/cell death, and DNA repair). And I have only one copy of p53.

But we have a plan to move forward, and it takes into account the p53 aspect.

There are two chemotherapies that are recently out of Stage 2 Clinical Trial (I think... maybe only one, or the combo?), as tested on elderly patients. If you're into that kind of thing, I think this is the paper my doctor referred to. Although I did not achieve complete remission with the first chemo regimen, this is not a second attempt (ie: failure of first attempt) but a re-induction--or a second first attempt.

I will receive a 7 day infusion of Vidaza (azacitidine), separated by 21 "rest" days and will get that 2-3 times. I will also take a daily oral chemo called Venclexta (venetoclax). The hope is that this regimen will put me into remission. The best part in my mind right now is that they are both done as outpatient treatments.

(For those who are fascinated with the genetic components, Vidaza is a hypermethylating agent--which would turn on the defective p53 and Venetoclax blocks the BCL2 protein, which would allow apoptosis.)

Before I can go home, and before I am considered recovered enough from the first round of chemo, I need to get my neutrophils up to 0.5.  They're currently too low to measure, although my total white blood cell count is slowly increasing, and neutrophils are a subset of white blood cells, so I'm hoping that they, too, will soon start to inch up.

Time to switch that positive energy into making my neutrophils rebound so I can get home and so I can start on the new chemo.

It's a plan and I always do much better with a plan.

And I need to get home to this:

Like a Phoenix

Since the last time I posted, I have another one to check off the list: I had my last appointment with the plastic surgeon on April 10th.  That is, unless I decide I want to have him do more liposuction to improve the shape of my breasts (nothankyouverymuch!). Overall everything looks good--Dr. Sterkin is very pleased with the final results.  I told him I was still having pain (feels like bruising) on the right side, but he said that could be all the nerves, which were triggered by the fat transplant. (Sure would have been nice to know that beforehand!) He also said I should not have had the OT do the deep tissue massage in that area, as the type of implants I have (textured) and the way he put them in (sewn to my ribs) could be damaged by massage in that area. It might even be causing lymphedema in my torso! So I stopped the massage, and it actually seems to be getting somewhat better. Less bruised, at least, though still some pain.

I then showed him how I reacted to the dye in the tattoo on my ankle and he said that my reaction, in combination with my low platelets and how thin the skin on my irradiated side is, would make him recommend that I do *not* get my breasts tattooed--at least nothing as major as I'd hoped.  If I wait another year or so, I could try to get nipples (or 3D nipples) tattooed, but probably nothing more major than that. I really saw no reason to get nipple tattoos (not like they'd be functional or something I'd want to show off like a cool design) until I started going to the gym and pool. I guess it would be nice to feel a bit less awkward when changing in public.  I don't know--I'll see what happens in a year.

This week I had my 3 1/2 month follow-up with Dr. Shah. Overall everything seems good.  Bloodwork is all normal except platelets (holding steady at 85K).  She was happy to hear that exercise seems to be helping with the joint pain.  (To be honest, I'm happy and surprised about that, too!) 

I did decide to drop out of the clinical trial I had been doing. I'm feeling some guilt about that.  However, the combination of the effort to get 10 tubes of blood from me at two different times within a week, plus my not wanting to be knocked on my butt for 3 days following the injections (severely impact my triathlon training), and knowing I'm a control and have made it through the majority of the clinical trial (thank you, Biostats, for teaching me about Kaplan-Meier curves so I understand my participation is not completely lost, even after dropping out), helps.

My trigger thumb (side-effect of Femara) seems to be getting worse and is causing me pain, so Dr. Shah recommended getting a cortisone shot. Still need to schedule that--thinking I'll check with the orthopedic doctor my mom used for both her knee replacements and carpal tunnel syndrome surgeries (Dr. Rory Wright). Add another doctor to the mix!

The experiment to wean off the compression garments is having mixed results.  I think it was going well when I wasn't wearing them most days (unless I felt my finger swelling).  But then gardening season started and every time I'd garden, I'd get swollen, so I wore them more for that.  And many doctors and therapists say you have to wear them while exercising. I actually notice more swelling AFTER exercising, and it seems I am always either exercising or it's the day after exercising, so I'm wearing them a lot more again. I did get two new sets, and realized how stretched out the older sets had gotten. I also read a post on how alcohol is bad for lymphedema.  Not that I drink a lot, but that plus the recent article about one drink a day increasing breast cancer recurrence kinda sucks! Nothing like a little guilt about my one drink a month.

Another relatively new side effect I've developed is restless legs--anytime I'm still for awhile, but especially when I'm trying to fall asleep.  Dr. Shah recommended trying a calcium supplement, so I'll give that a shot.

The biggest issue I talked about with Dr. Shah was my brain fogginess. Of all the side-effects I'm having from treatment, it's by far the one that is bothering me the most. The worst part is that I feel like it's getting worse, and not better. I'd chalked it up to chemo-brain, which is supposed to improve following that first year after treatment ends. I find myself really struggling with names and with words in general (I can give you a long description of the word I'm looking for, but can't come up with the word). And recently there's been a LOT of people saying, "remember when..." and I honestly canNOT remember what they ask about. It's annoying and a little scary. Dr. Shah asked about brain exercises/games and I told her I do 7 Little Words every morning and have recently returned to playing Words With Friends (thank you to those who play with me!). She said that was good, but I should add math games--like Sudoku.  I don't like Sudoku, so Greg suggested KenKen, which is kind of fun, but I wish there was a social math game like WWF.  Anyone know of one? The other thing that Dr. Shah recommended was a visit to a Neuropsychologist to determine if my brain fogginess is really chemobrain, or something else. This made so much sense, as I had just read a couple interesting articles that supported the idea of it NOT being chemobrain. My friend Dawn posted an article about breast cancer survivors developing a form of PTSD--usually about a year after treatment ends. And then I found another article about how brain fog after breast cancer treatment might be caused by PTSD and not chemo. So I agreed to a four hour evaluation appointment with a neuropsych next month. On the one hand, the last thing I need is one more appointment, but I am determined to do whatever it takes to maintain as much quality of life as I can. So I'll do it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And finally, the biggest change in my life lately--and the inspiration for the title of this post: Team Phoenix.

I am now 6 weeks into the 14 week training of Team Phoenix.  I will complete my first (sprint) triathlon on July 30, 2017, and any of you are welcome to come meet me at the finish line. It starts with a 1/4 mile swim in open water, then a 15K bike ride, and finally a 5K run (or walk).  I have already ridden 15+ miles on my donated Trek bike; I have done 5K's before and am C25King my way back to that, and I am desperately trying to learn to swim in a more effective manner than I have all my life so I can do that part. 

The exercise plan has resulted in some more muscle aches, but it has done amazing things for my joint aches and flexibility.  I feel STRONG!

Still, the best part of Team Phoenix is that I'm doing this with 56 other female cancer survivors (most breast, but not all). Some of us started w/o knowing how to swim, or not having even ridden a bike for years. Some started as previous triathletes. But we're doing it together, with the most amazing team of coaches possible--including Team Phoenix alums. I cannot put into words what a powerful experience this is, and if you are a cancer survivor in the Milwaukee area, you need to do this next year!

The support for Team Phoenix is amazing and I want to give appreciation to the organizations that donate.

*Wheel & Sprocket loans us brand new Trek hybrid bikes (which we can buy at a discount after the triathlon); I've named mine Fawkes

*Land's End gave us each a swimsuit (the one I got FITS ME as it's a tall one)

*One Step gives us a discount on custom-fit running shoes (I can't believe how much difference it makes to own "good" running shoes that correct for my inward-turned knees)

*The JCC gives us a free membership the duration of training (so I can practice swim, but also could use the treadmills and stationary bikes on rainy days)

We travel all over SE Wisconsin for practice twice a week and to see trails and parks that I didn't know existed. 

It is tiring and very time-consuming, but I'm dragging family into practice with me so I get to see them. If anyone wants to bike or run with me--or help me figure out swimming--let me know.  I'm determined to do this, and to set myself on a path to continue with at least some of the activities. There's a pretty active TP Alum biking group!

And so I am, slowly, rising (like a Phoenix) back to my old self--or maybe, in some ways, a better self. All I have to do is flip back through my blog entries to see how far I've come. Thank you all for supporting me.

Two years

Facebook reminded me that it's been two years since I started this blog (with this post), but I've been keenly aware of all the two-year "anniversaries" in the last 5 weeks.  It started on Thanksgiving day, which was the two year mark since I first found the lump.  It brought me back to those stressful weeks not knowing, and then, knowing, but not saying anything about it, and not *doing* anything (i.e.: surgery, chemo, etc.).  I remembered all the feels of seeing my primary care doctor, sneakily having my friend Everett cover my classes so I could get the diagnostic mammogram and then the biopsy done (and letting him think that I needed the time for my Mom's medical issues).  I remembered reading and getting more and more scared as I learned the characteristics of my cancer (HR+, HER-2+) and the side effects of the probable treatments.  I remembered worrying how I'd start a new job in the midst of treatment and how I'd get through graduation and Christmas, knowing I had a cancerous tumor inside of me and that I wasn't doing anything about it.  Each memory brought a little more anxiety and I worried about what D-day (diagnosis day--when I actually heard the words "you have cancer") would bring.  And then, to my amazement, it was December 6th and I had completely missed December 5th--D-day.  And I think that, in many ways, that represents the way my whole cancer journey has gone--fear about things that ended up not being that bad.  

Sure, when you look at the whole picture, this really sucks.  Getting cancer at age 44; having ALL THE TREATMENTS with their associated side-effects that I'm still managing, and always will be; all the time and the money spent on trips to medical appointments (I'm up to 171 appointments; no impact on my day-to-day there!); the ever-present fear of recurrence or metastasis...  But on the whole, I handled treatments well, and so far, treatments are working (fingers crossed ;)).

I haven't blogged for three months, and in some ways a lot of medical stuff happened in that time, but in other ways, not much happened at all.

I've continued with my clinical trial, and my suspicion was confirmed.  All along, I've felt that I was in the control group.  Basically, the immunological tests were all showing no response, so I knew that either I had the control or it wasn't working.  This time, after giving the booster, the oncology nurse left behind the bag that the injections were stored in.  It clearly read "Neuvax-CTRL."  So while I "knew" I was getting the control, I didn't really *know* it until last month.  And I still have to go in twice every 6 months to give 8 vials of blood.  It's a little harder to do that, but I know that control groups are also important in clinical research, so I'll do it.

The scariest thing that happened was in late October.  After my final reconstruction, I had to be very careful to not move my implants, so I really didn't touch my new "breasts" for a long time.  But I was having lots of stiffness on my radiated side and I feared that the scars were sticking, so I got permission to begin some gentle massage on the scars.  It was then that I found a lump in the exact same spot that my original main tumor was located (10:00 on my right breast).  I told myself that it was likely lumpiness from the surgery--I even called my oncologist's office, who said it was probably post-surgical changes.  Because they didn't know what my breasts felt like prior to surgery, they wouldn't examine me to be sure that's what it was, though.  I had to see my plastic surgeon--who couldn't get me in for weeks.  Finally, after several appointments and "it's probably nothing" comments, I ended up with an ultrasound that proved that it was, in fact, just necrotic fat that did not vascularize when Dr. Sterkin did the liposuction and injected fat over the implants.  Who would have thought that the phrase "dead fat" would bring such joy?  

I've been faithfully wearing my lymphedema sleeves and gloves day and night, and the lymphedema has not gotten worse.  Unfortunately, it hasn't gotten better, either.  In addition, I was somewhat babying my right side and lost a lot of strength in that arm, and also had a lot of tightness post-surgery, so got referred back to Audrey, the OT.  I'm getting stronger, and have a ton of exercises for strength and stretching, and have been discharged from OT again (after 2 months).  But Audrey has said that I'll likely need to wear a sleeve the rest of my life since the swelling hasn't gone down in 5 months.  

The actual sleeves are a bit more attractive than the makeshift one I originally had.

However, I might have to invest in one of the cool sleeves that LympheDIVAs sell.  Greg thinks I should get the cyborg one:

All in all, things are good.  I'm still vaguely annoyed with how tired I am--though at  least some of that may be due to age!  And while the Femara is not as bad as either Arimidex or Tamoxifen, I do still have joint aches.  I also had a bone scan, which showed no signs of osteoporosis, but some pretty bad arthritis in my right knee.  I've pretty much given up on running, but am trying to walk (at least 10,000 steps per my FitBit) every day.  I'm considering doing some sort of a gym thing--which came to mind when I realized how weak I'd gotten.  Considering yoga, too, although I'm not a huge fan of it yet. Open to suggestions of fun ways to stay fit!

Finally, we had an absolutely magical Christmas.  All five of us spent five days in Puerto Morelos, Mexico.  The sun, green things, warmth (magic for my arthritis!), and family time was perfect.  One of the coolest things was doing yoga in a pagoda in the ocean.  If I could do yoga that way all the time, it would definitely be my exercise of choice!  I mean look:

The trip was one of the many Good Things that cancer brought.  Pre-cancer, there is no way I could have justified spending that much money on a vacation.  And we would have missed out on those five amazing days.  The memories made on our trip far exceed any joy that would have come out of making an extra mortgage payment ;).  

So on this New Year's Day, 2017, I resolve to say "yes" more often, and to make fun a priority.  I would ask all of you to do the same.  Don't wait until it's forced on you.  And if you have something particularly fun in mind, feel free to ask me to join you.  I'll try my best to say yes.