Quick check-in

 Hi, all.

Just a very quick check-in.

I'm currently getting my last infusion of the CLAG-M (chemo) portion. This is the routine care part. Friday afternoon will be the experimental part (lintuzimab) and the "biggie." I've been heard it will happen sometime in the afternoon. Anywhere from 1:30 - 2:30 has been thrown around. When I hear more, I'll let everyone know in case you want to focus light, healing, prayers, vibes or just powerful Ac-225 radiation at my CD33+ leukemic cells.

The second thing I wanted to say is that apparently people have tried to send me things to the address that the nurse said to use, but it's not working.  I guess it's best just to send cards to my home address. Greg is coming in to see me every day and can make deliveries that way. I'm hoping that my mail sent here eventually makes it to me, but it might well be delayed. I don't want to post my home address on a public blog, so if you don't have it and want it, let me know. I'll post it on Facebook, though, in a "friends only" setting.

Thanks for all your continued thoughts and messages. The meds have kept my side effects to a minimum, other than exhaustion, but I know that tomorrow will likely bring more stuff as I enter that second week. The only way to the other side is through it, so I'm pushing through it!

Goodnight, all.

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!

I'm here.

Today started off rather rough. I'd done a pretty good job of "forgetting" about the fact that I was about to have another long hospital stay. So when I got called at 8:30 and told I could come in "any time now," I kind of panicked. Luckily I was able to push for a 4:30 admission time since I won't start any treatment until tomorrow. While I had the admitting nurse on the phone, I asked if I could make a room request and she said since I wasn't coming in until later, I'd have more options. I'm back on the South side of CFAC, which overlooks the ponds. It's a nice view, and I can keep my shades open all day and get sunshine without it shining in too brightly in the morning or evening. AND it's the side of CFAC where people can walk out by the ponds and wave up to me. Then I realized I still had to pack and of course I suddenly remembered all the things I wanted to do before I went back to the hospital. 

The last thing I did before admission was make Ash & Trav take a walk with Kravitz and I. I stored up some pretty awesome happy vibes there.

Of course I had to start things off with a nice fever (100.6) on admission vitals, so I got to have more labs drawn (PICC plus peripheral), urinalysis, and chest x-ray. For the record, my temp dropped down to 99.1 in less than two hours and to 98.7 in another hour. Just saying...

I feel like I mostly have this hospital thing down to a system now. One suitcase is pre-packed with hospital clothes (the tops with snaps down the side for IV access; leggings; a nice selection of my brave socks; a few hoodies; undies and hats and pajamas; my toiletry kit). A second suitcase holds my entertainment stuff (computer, iPad, portable speaker, charging cables, books, knitting, fun pens, snacks and water supplements). One bag has my shower caddy with everything I have to keep near my bedside (glasses cleaner, biotene spray, lip balm, lotion, essential oils, anti-nausea candy, back scratcher, hand sanitizer, etc.). Another bag has stuff to decorate my room (family photos, inspirational posters, fake plants). And the last bag is a white garbage bag filled with my king-sized pillow and twin XL comforter. I highly recommend all of these things if you're looking at a lengthy hospital stay.

While I did admission questions with the nurse, Greg unpacked everything. As she was going through the list of questions, the nurse said, "You've mentioned Greg and your three kids. What kind of support system do you have besides them?" And I couldn't even speak. I gestured toward Greg because tears had welled up in my eyes. How can I even begin to describe my social support system? I can't measure it. I can't possibly list all the things (and all the thoughts) that all of you have done and continue to do for me. My hospital room is full of evidence from my previous stays. My Facebook page is continually full of it. And if there is any way that support = cure, I am golden.

The nerves went away once I was here. It's a strange comforting feeling to know that I'm so closely monitored that nothing terrible can happen without someone knowing about it. :) I know it'll only be a few days until I'm so sick of having all my input and output measured, being vital'ed every 4 hours, and being connected to an IV most/all of the time. But tonight is okay. I can live with okay.

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 +121; more roller coasters!

I think I might stop with the post-transplant counts for blog post titles. I'm not sure it really matters at this point since my primary focus is the leukemia and not the transplant.

I've previously written about cancer diagnosis being a roller coaster (see here and here). But today the roller coaster took off while I was still in my appointment.

My labs are holding/low.

WBC: 0.7 (up a teeny bit)

ANC: 0.03 

HGB: 8.1

PLT: 29K

Peripheral blasts: 40% (though Dr. Atallah said not to panic as my counts are so low that this might, literally, be two cells of five seen.)

As a side note, while I was waiting to see Dr. Atallah and the door to the exam room was cracked open, Dr. Hamadani peeked his head in to say "hi." It was really nice to see him--he totally grew on me as a provider the longer I saw him. He came in and almost immediately looked at my legs and said, "I see you have a bit of chronic graft vs. host disease here on your legs. What are they doing about it?" I said that I'd had punch biopsies at the dermatologist's but they said nothing came back other than a bit of eczema-type rash, which they prescribed a topical steroid cream for because they didn't think it was GVHD. He said, "I see. Biopsies are very good at finding positive results. <pause> That is classic GVHD rash. What they prescribed will take care of it." And then he left. I'd call that classic Dr. Hamadani--using exactly the number of words needed to convey everything without any extra. I seriously love that.

So as a reminder, I had gone off of all chemo since last Monday in anticipation of a spot opening up in the increased-dosage, Phase 1 trial known as CLAG-M + Lintuzimab. The FDA had given verbal approval to Froedtert and they expected written approval soon. Unfortunately, Dr. Atallah said that the absolute soonest that approval would come would be September 14. That's a long time w/o any treatment for a growing leukemia, and that's no guarantee that I'd even be accepted or that it would happen on the 14th (roller coaster dip). However, there is another clinical trial, called PraGO. This trial combines the already-approved antibody-drug conjugate Myelotarg, which also targets CD-33 expressing leukemic cells, with a histone deacetylase inhibitor called Pracinostat. Pracinostat (an oral med) essentially causes even those leukemic cells that don't express CD-33 highly to express it. The Myelotarg (infusion) then, presumably, seeks out all the leukemic cells and destroys them. This clinical trial is also in the increased-dosage, Phase 1 stage. Myelotarg is supposed to be very well tolerated, while Pracinostat, even at lower doses, causes fatigue and nausea. Nausea is one of my least favorite things, but this treatment could be done outpatient. OK, I can do it! Let's go! (roller coaster climb) 

Dr. Atallah stepped out to get the paperwork for me to sign to enroll in the clinical trial. Travis (who was with me at the appointment to be my extra set of ears) and I waited. And we waited. And we waited. And then Dr. Atallah came back in and said, "I'm sorry--we have to change the plan." Apparently between the time that he found this clinical trial (this morning? yesterday? whenever) and when I was about to sign up for it, another patient filled the spot (roller coaster descent again).

While my mind was again wrapping itself around re-hospitalization for a not-clinical trial, he said that what he'd like to do is give me the Myelotarg by itself. It has only had 10-20% efficacy in trials up to this point, but it should keep the leukemia in check for a few more weeks and at that point it either works (maybe for once I'll be on the GOOD side of rare effects--cross fingers) or we may have opportunities for other clinical trials (roller coaster glides into the ending where I can jump out).

My emotions are mixed. I was hopeful for the CLAG-M + Lintuzimab, but not necessarily sold on it. I was not looking forward to another long hospital stay, especially now that Froedtert has again restricted all inpatient visitors. I was intrigued by the PraGO trial, although the thought of extreme nausea made me very, very nervous. I can barely eat now--if I vomit everything up, I'll waste away to nothing. And so the description of the Myelotarg itself is comforting. 

I am focusing on the good things going into the Myelotarg treatment. I'm not a religious person, but I'm a superstitious/spiritual person. When I first posted last month about not knowing if I'd get into the CLAG-M trial, my friend Sarah (who is a Science geek like me) told me about another treatment that targeted CD-33. That treatment was Myelotarg. I had written it in my notes to ask Dr. Atallah about if he had said that we'd do CLAG-M alone. So I see that as a sign. I appreciate the ability to do this treatment as an outpatient. It will be three treatments (next Tuesday, Friday, Monday) which involve a two-hour infusion preceded by pre-meds (Tylenol, Benadryl, Methlyprednisolone) for an hour, and then an hour of observation after due to an increased chance of reaction to the Myelotarg. Three long days. It will (again) knock down my blood counts, so I will need frequent labs and probably blood and platelet transfusions. But I will be home at night and on the days in between and even if I'm too tired to do anything, I would rather do nothing in my home than on a hospital floor. 

Better yet, it means that I should be home when our newest family member joins us.

Cancer changes people. And the strangest thing is that it changed me from a not-dog person to an I-think-I'd-like-a-dog person. All the hours home and years of my children wanting a furry pet must have stuck in the back of my brain. So after a failed attempt at adopting a Shihtzu, our family decided that we wanted to adopt a retired Greyhound. Last month we started the process through Greyhound Pets of America. They've been wonderful! They did a home visit and approved us to adopt when the next batch of greyhounds arrived. On August 22nd, thirteen retired racers arrived from a track in West Virginia. Because of my immunocompromised state, we were allowed to view them before it was open to others. Monday morning we visited and one dog chose us.

Kravitz (Ash chose his name) was a pretty successful racer: racing 172 times, winning 24 times and taking second 16 times (his racing name was LK's Big Baller, if you want to look up his record). He is 4 1/2 years old. He was neutered Tuesday and will spend about two weeks at a foster home starting next Tuesday. There he will learn how to live with people before he joins us. I am shocked at how excited I am for him to join us. And so happy to have something fun for us all to look forward to. I'll have more photos at some point for those who like that sort of thing. :)

Still don't enjoy roller coasters, though. Give me a nice, calm lazy river any day.