Thank you, and some thoughts about Lori

First off, I want to thank everyone for all of the kind words you have written about Lori on Facebook and/or said to me and the kids. It means a lot to us to know that other people loved and admired her as much as we did. Further thanks to the many of you who attend her drive-through visitation last Saturday. We are so glad you could share that day with us, despite the pandemic.

An obituary for Lori has been posted here. Feel free to share it with whomever you think might be interested.

I'm going to get a bit reflective (and probably wordy) below, so if that's not your cup of tea, no offense taken.  Just click over to the obituary. No need to sift through my ramblings.

 

Visitation/Memorial Information

As I am sure you are well aware, Public Health Superhero Lori Ahrenhoerster would not tolerate a large gathering of people during Covid times, and there could never be a Celebration of Lori's Life with out lots of hugs (and food!).  The kids and I will plan such a celebration of her life to take place when it can be done so safely, hopefully next summer.

In the interim, we know that many people will want to express their condolences (and make sure our kids are told repeatedly how awesome their mother was), so we are going to hold a drive-thru visitation line this weekend for anyone who would like to attend.

Here are the details:

When: Saturday, October 24. Come anytime between 12:00-3:00

Where: UWM at Waukesha parking lots 1 and 2. 1500 N University Drive, Waukesha WI. (Please enter on University Drive from the north, so you can make a right turn into Lot 2.)

What: A chance to express your condolences to the family, for all who would like to. We will be asking you to stay in your cars and wear a mask when talking to the family through the car window. Sorry, no hugs at this time (those can wait until next summer). 

Apologies for the short notice.

Lori identified three charities that she would love for donations in her name to be made to:

Metavivor

Team Pheonix

UWM Zilber School of Public Health

So Long, and Thanks for All the Love

 Hi, All. This is Greg again.

I will write a more detailed post in a few days, but for now I just wanted you all to know that Lori passed away this morning (Wednesday, October 21). The two days she spent in hospice were everything she wanted. She spent the days with me and the kids, and she was able to talk and laugh with us. She was smart and charming and loving and funny to the end.

The nurses did a great job of managing her pain and anxiety, and she died peacefully.

She was aware of all of the love and the kind, supportive thoughts you were all sending her way. She was sad that she didn't have the ability to respond to each one of you, but please know that some of her last thoughts were about how wonderful you all are.

My family and I need some time just to ourselves for the next few days, but I will post more here when I can.  Many thanks to those of you who have reached out to me and the kids offering your support.

The TRALI Problem

Hi, Friends of Lori; this is Greg. 

Lori has requested that I write a quick update. It will lack the usual scientific clarity of Lori's posts, but she wanted to make sure people were updated on what's going on.

On Friday (10/16) Lori started having trouble breathing. This is likely due to either the fungal infection being in her lungs or a condition called TRALI (a bad reaction to the granulocyte transfusion). They moved her to ICU Friday night so they could keep a closer eye on her. 

Unfortunately, they had to give her a COVID test to rule it out (even though no one actually thought she had COVID). This ended up giving her a bad nose bleed, which, given her low platelet count, took a very long time to get under control. Her first night in ICU was spent dealing with that, along with her breathing issues. (For the record, the COVID test was negative.)

She was being given oxygen with a mask and was doing ok with it when she was awake and sitting up, but when she would fall asleep, her breathing would get rapid and her pulse ox would drop under 90. Saturday during the day she felt ok.

Saturday night was a rough night. She didn't sleep well and got panicky. It was hard to keep her pulse ox above 90. Sunday morning she was pretty miserable: exhausted and hungry.  They switched her from a regular oxygen mask to a BiPAP machine, which is similar to those CPAP machines they use for sleep apnea, except the air pressure goes both ways, so it really helps you breathe better. (Apologies to people I was messaging Sunday morning for incorrectly saying they were using a CPAP machine.) They also gave her some meds to help her stay calm and relaxed

The BiPAP worked very well in helping her sleep. She was able to sleep through most of Sunday. And has also been able to eat and drink a little.

We had a serious discussion with her doctor this morning. The longer this goes on without showing improvement, the less likely it is to be reversible. If it doesn't start showing improvement in the next day or so, we will transition her to comfort care/hospice.

I will try to keep you all updated through this blog, since this is where most of you look for information on Lori's condition (we aren't going to set up a Caring Bridge site, as a few people have asked about, since this is already here).

Cara was able to come home from grad school and I am able to go on FMLA starting tomorrow, so we are all together and we are ok (thanks to the many of you who have asked if we needed anything).  If Lori is moved to hospice care, we will all be able to visit her at once, which will make Lori happy. In a perfect non-COVID world, she would want to be surrounded by all of her friends as well, but we will be limited to immediate family. Please know that she feels your love and sends it right back to you all.

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. :)

One granulocyte infusion done!

Whew...

I was told earlier in the day that my donated granulocytes would be infused about 8:00 pm on Friday. Visiting hours end at 8:00 pm, but I was worried about how this might go so I asked Greg to stay, at least for the first fifteen minutes. Luckily our nurse was willing to ignore that he was in the room.

I needed to receive Benadryl and Tylenol before the transfusion to minimize a reaction to receiving blood products from someone who is not me. Granulocytes are much more likely to cause a reaction than either platelets or red blood cells, and I already had one reaction to platelets, so that made sense. My nurse said she preferred to wait for the product to be on the floor before giving me my pre-meds, because blood products are often late. In addition, granulocytes have the shortest life after being harvested of any of the blood products, so I knew we had to get them in ASAP. The infusion instructions said to infuse over 2-4 hours. The slower the infusion, the lesser chance of reaction, but of course the longer time of the cells not in my body working, but potentially dying in the bag. I negotiated with my nurse and we agreed on a three hour infusion.

They weren't here at 7:30. Or 8:00. My nurse was calling over and over to see when they'd arrive. They had to be couriered from the donation site (not sure where) and then irradiated at the Froedtert Versiti, and then they'd be delivered to the floor. My nurse was also worried about time and discussed with Versiti that when they arrived on the Froedtert/MCW campus, they'd call her and she'd start the pre-meds. 

I was getting more and more nervous and worried about this life-saving donation being completely useless if it was too late. We waited. Finally about 9:15 (Greg was still here), my nurse heard from Versiti that they had the donation and were treating it. I got pre-medicated. But the donation didn't arrive in half an hour. My nurse checked and said half an hour before transfusion is the minimum, so I'd still be okay. We waited. Greg and I were both falling asleep. And they they arrived at about 11:00. Unfortunately they expired at 1:10 am, so they had to be infused over the shortest time (two hours).

Greg waited and the nurse stayed in my room for fifteen minutes to monitor my vitals and make sure I didn't have any classic reactions. I didn't feel anything. I was just tired. The fifteen minutes were up, and  Greg and my nurse both left. I settled in to do some visualization of the cells traveling to each of my fungal spots and working their magic. (By the way, if you haven't watched Cells At Work, it's all really good, but the neutrophil animations are especially accurate and relevant--just know that I was given a TON of neutrophils so it was even more chaos.)

Not even fifteen minutes after the nurse and Greg left, my nose started running like a faucet. Then I was sneezing like crazy. At the same time, the stye in my left eye was throbbing and swelling so much that I couldn't open my left eye. As that continued (I had to find another box of Puffs Plus), the entire front of my face was hurting. My upper teeth ached so bad that I had to remove my night mouth guard. Still more sneezing and nose pouring out stuff. My nurse checked on me and asked if there was anything she could do for me. I didn't know what that would even be, and I certainly didn't want to stop the infusion (or even pause it, since we had no wiggle room on the expiration time). I told her I wasn't having trouble breathing or itching or any other typical reaction. I wondered if it was really the neutrophils working that quickly.

Neutrophils are the most abundant white blood cell (in healthy people). Unlike the branch of the immune system that has memory to prior exposures and makes specific antibodies to remember specific exposures (thus the science behind an immunization--which takes awhile to take effect), the granulocytes (neutrophils, basophils, eosinophils) are the immediate response. They are non-specific, so if something that is foreign enters, they hit it right away. When I had mucositis following my stem cell transplant, I only needed a few thousand neutrophils to show up before I started feeling better. In fact, I felt better even before they were measurable in my blood. But remember this transfusion was loaded with neutrophils.

So they flooded every part of my body that had something foreign present. Thus the sinuses (I'm assuming that there was/is fungus in there), my eye stye, maybe the random bacteria in my gums since I haven't had my teeth cleaned in so long? And my fungal skin lesions. Every single one of them started to throb. I'd been told I had four spots on my back, but couldn't see them. I felt them. I felt it in my biopsy site, where my first spot appeared, on my upper lip, and several on the soles of my feet. It was excruciating! I tried to visualize over the pain. I felt that this HAD to mean that this treatment was working and doing exactly what it should. I made it through the two hour infusion. But the pain didn't go away. In fact, about an hour after the infusion completed, it got worse. (My Tylenol had worn off). I couldn't open my eyes (throbbing stye plus photosensitivity) but actually asked the nurse for help with my pain. I didn't think I could take Tylenol again, and so she suggested oxycodone. I hate opioids with a passion, but I remembered how they helped me get through four miserable nights with mucositis and that I didn't get addicted. I agreed. But the doctors on call wanted to use Tylenol instead. Finally, after not napping all day Friday, and staying up through the infusion and aftermath, sometime between 3:00 and 4:00 am, I fell asleep.

When I woke up this morning the throbbing in my sinuses, eye and teeth was gone. As soon as the morning Tylenol wore off, the pain in the fungal skin spots returned, in addition to "flu-like symptoms" including chills and body aches. I needed more sleep. I took more Tylenol and slept more. When I was due for my next Tylenol dose, it had to be delayed due to taking Tylenol before the anti-fungal. So I hung out in fetal position and made it through. I am happy that the Tylenol seems to be doing the trick.

But how amazingly cool is this all? To actually FEEL the attack of the neutrophils all over my body? I talked to Dr. Swanson about it to make sure I wasn't over-simplifying things and she said it made sense. Furthermore, she examined my spots and showed me the proof. The flat marks now had true heads, filled with pus, which is the dead neutrophils after their work is done.

I am in awe--again of my donor who must have been at Versiti much longer than they'd expected, and will be in the future. But I'm also just blown away by the human body and how, when it works, it works!

I don't think this has taken care of everything, but it's made a good start. And I have to say that I'm also really very happy that I don't have to do it again tonight already. I'm hoping for a few good night's sleep and maybe decreasing pain without medication. And then I'll be ready to do it all over again on Monday (and Tuesday and Thursday, apparently). Thank you, amazing donor!

 

Baby steps up

Not much has changed since yesterday, and a few little things have been added--namely I also have a bacterial (strep) infection in my blood which has caused fevers today. But I got so much "good" news today that I wanted to share.

All tests looking for fungal infections other places in my body have shown no sign of fungal infection! That includes:

Sinus CT

Echocardiogram

Chest CT

Abdominal CT

Third (and final) nasal scoping

It doesn't mean that there isn't more Fusarium somewhere, but there doesn't appear to be any obvious hidden site. That means less to clear when and if I get functioning neutrophils, which is good.

But the biggest news is that during rounds I was told that they have secured a donor to do a granulocyte transfusion! I don't know many details, and they are very rarely done, so the nurses and many of the APPs haven't seen one, but theoretically at least (since I haven't heard anything definitive), I will start receiving what is essentially a "neutrophil transplant" tomorrow. As mentioned earlier, they aren't always effective, and there can be icky side effects, but this offers me a chance to fight off the fungal infection and allow my counts to recover. 

This is possible because someone matched me, was contacted by Versiti, and agreed to come in today to receive a neupogen shot and steroids, then to return each of the next three days to donate their granulocytes (similar to a platelet donation or double reds where needles are in both arms and the blood cycles through a machine to separate parts out). Wow. They received a call today with a 4-day commitment and agreed to it. I am blown away.

I'll try to share more details as I know them, and since I haven't actually heard a fully laid-out plan, I guess I'll believe it when I see it, but I am excited. 

And thank you all for your Facebook replies, blog comments, personal messages and texts yesterday. I cried a lot last night, but they were happy tears as I reminisced with so many of you. Thank you for such a wonderful gift. And thanks to those who have driven past and waved to me in the window. Today my visitors were announced by the roar of two Harleys. I told the ID doctor that was my cue and I had to get to the window. So wonderful to see your faces, even from far away. 

I continue to feel so unbelievably surrounded by love. Thank you for the best feeling, as I drift off to sleep, still visualizing my new marrow making neutrophils.

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!

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.

Day +114

Tuesday was my lumbar puncture and when I left, Kim (the PA) told me that results would be in on Wednesday or maybe yet Tuesday afternoon. So when I didn't hear Tuesday or ALL DAY Wednesday, I was panicking. My assumption was that they had found something in my spinal fluid and were working to adjust things, scheduling appointments, and waiting to contact me until they had a full, modified plan in place. Silence... 

And then this morning, right before we headed out for family pictures, Kim called to tell me that THEY DID NOT FIND ANY LEUKEMIA IN MY SPINAL FLUID!

(So my smiles in the family photos are genuine.)

The other medical appointment, dermatology, was yesterday morning. I seem to have baffled both of the dermatologists (the resident and his supervisor). They ended up taking two punch biopsies (which didn't hurt during the process, but now are very ouchy as they're healing). They don't think it looks like leukemia cutis or like GVHD (although they'll test for both). The dermatologist said if she had to guess, it looked like some sort of reaction to medication, likely the Venetoclax. But unfortunately they don't have a test to determine which med--just the likelihood that it's medication-induced. Since I'm on five different meds now, that could be fun to figure out, too.

And I'll leave you with a quick teaser photo from our family picture session this afternoon:

I cannot tell you how happy I am to have my whole family together--even if it's only for a few hours.

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

Day +104

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

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

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

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

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

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

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

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

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

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

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