Acute Myeloid Leukemia with Aberrant CD7

Hello Lori..
Yes! His blast count was very low!!! So thankful. So 6 a.m. Friday, the line goes in followed by chemo.
How sweet of you to remember us. We have many concerns outside of the actual process but we are here now and he is very strong, which helps me mask my fear.
One problem is that the staff is only 50% vaccinated!
The rest of the story is one I'm not comfortable sharing on a forum, but we will graciously fight our way through this and think good thoughts.
I have been granted permission to sleep there again. I am very afraid of him getting COVID in such an unsafe envirionment as the hospital is overflowing with cases. ICU of 300 is full. Also afraid of getting it myself, at 73 and worse, passing it along to him.
I likely will have the option of getting the 3rd shot, but afraid that could be dangerous. We got it in mid January, so protection may be waning.
I was told by a pulmonologist we can put a sign on our door saying only vaccinated staff permitted access. But I can only imagine what new problems that may cause.
We know the donor is 23 and female. Do not know if they are fresh or frozen.
Again, thank you kindly for your thoughts. Unfortunately noone can take the fear out of the diagnosis and process, but very much appreciate your concern. Happy for you that you have passed the 2 year mark!
Warm regards,
Lorraine

Hi Lorraine. Well, the clock is now ticking, huh. I’m glad to hear your husband is entering this next period strong and in a good spot health-wise. Having a low blast count is excellent. It’s so important to go into a transplant with as few cancer cells as possible. It will take some time before the new immune system gets that chance to fight against the cancer as it takes a while just for it to find a home in the empty marrow and set up housekeeping. It’s pretty amazing really how the new cells know how to find their way to their new residence. ☺️

I’m getting the feeling your husband is in a much better mental state than you are right now. It has to be the curse of the caregiver! I’ve thought this before…we patients pretty much have to go with the flow and trust our doctors at this point to make the right decisions. We have to rely on their expertise with the stem cell transplant and all the peripheral issues they’ll deal with as we go along. The caregivers are stuck worrying about all of it!! You’re so wise to ask questions and don’t be afraid to keep pushing for answers!

I’m with you though, Lorraine, I’d be so nervous with the lack of compliance with unvaccinated healthcare workers at that clinic! That’s inexcusable. Especially with the vulnerability of transplant patients! Do they have a dedicated floor for transplant patients? That will help keep any risk of infection down. Because I’ll just say it right out, by the end of that first week when your husband finishes Conditioning, he will no longer have immunity…from anything. By the end of about 10 days he will be at an all time record low with his blood products, called nadir with no white blood cells and no platelets. So it will be paramount that he is protected from any infection. That’s why I mentioned all the meds in our last visit.

From my experience from day one of Chemo onward there was no hugging or close personal contact for several months, masks had to be worn by all parties all the time and frequent hand washing, sanitizer was essential. No fresh plants or flowers and all my mail had to be sanitized with Lysol spray.
Even if the staff haven’t been vaccinated, if they are permitted to work on that transplant floor they really should be in full preventative garb to be around your husband and other transplant patients. I had my transplant pre-covid and it was mandatory then.

Are you immunocompromised yourself? If not, then maybe hold off on the 3rd vaccination unless your doctor says otherwise. There is no viral shedding from the vaccine but you also want to be feeling your healthiest during these next few months.

I agree, putting a sign on the door for only vaccinated people, while it is a GREAT idea could really create some staffing issues. But oy…I feel your pain. Pre-covid when I was in the local hospital for all the AML chemo and recovery, I did have a sign on the door “masks only”, even though it was as negative airflow room.
Oh that’s a good question! Do you know if the rooms on the transplant floor are negative airflow rooms. They should be. This will help keep the pathogens from migrating into the room.

Aw, don’t you love when these young people step up to donate cells! 23…she’s young and healthy and unaffected by time! My husband jokes that I now have the energy of a 22 year old. My male donor was 20 at the time. LOL. I have to admit I do feel really young inside but the only magazines under my bed are quilting mags. LOL.
Lorraine, this is a subject near and dear to my heart and I will do my best to help you both through this. Please keep in touch and let me know how your husband is doing, won’t you?
Sending a huge to both of you!

Hi Lorraine, I just wanted to send best wishes to your husband as he starts his transplant journey in the morning. The road is long and difficult but he’s gone through all the cancer treatments and came out ahead of that rascal. This is the next leg of that cancer journey to eradicate it once and for all!

He’s entering this strong and positive…and he has you by his side. Please let me know how things are going with updates when you get a chance. Remember, I’m here for you both. Sending a virtual hug to you and your husband. 🤗

Dear Lori-

You are such a lovely, thoughtful person!
Yes, here we are and we're so exhausted already. But he's so strong, so I have no choice but to rise to the occasion. I am so terrified that some of the staff on the transplant floor not vaccinated, including nurses of course. I was fortunate in that I was able to get the third booster to protect us both. I am 73 and can't risk even getting a mild case because I could give it to him. Richard's oncologist strongly recommended I do so. I spoke with one of our nurses tonight who we like very much and when I brought up the subject, I could tell she was not vaccinated. She said not to worry because they all wear masks and gloves. Not much I can do but hope for the best. I can't wait until we are back home because I do a very good job of protecting him to the best of my ability.
I will be sleeping there full time, coming home maybe once a week for a few hours to do laundry, mow the lawn and pay bills. I really don't like to leave him because I was able to ensure he got good care as a result of my presence. If you miss the doctor's visits, you're clueless and that's not where I want to be.

Will keep you posted when I am able. Thank you for reaching out with so much love and support. You're a special person.

Love,
Lodi

All of the emotions, procedures, meds, physical recovery, etc., of my transplant are so fresh in my memory. As you already realize, this is all very exhausting and filled with unknowns. Being able to help you stay positive and informed is my pleasure.

I can appreciate your fear with having so many of the staff unvaccinated. But with or without Covid, the nurses and anyone remotely in close contact with your husband would be wearing masks and sanitizing their hands. If not, insist on it. Try to not live in fear. Knowledge is power and you have a firm grasp of the severity of Covid. Being there with your husband, you’ll have your radar set on high alert and he’ll be well protected. Good for you, getting the booster!! I got a notice today to schedule my appt.

Your consistent vigilance and concern will be draining over the next few weeks. Please find moments where you can rest and decompress so that you can remain strong and healthy too. I think once you’re able to trust the staff and see this working, you’ll be able to relax a little more.

We don’t know how strong we can be until it is the only option! Thinking of you both and sending love…Lori

@lodi Good morning Lorraine, by my reckoning it’s Richard’s last day of conditioning. How’s he coping with the chemo? I hope he’s not having too much nausea but I’m sure he’s getting tired. It’s more powerful than the chemo he’s been on in his AML journey.
But it’s doing the job of cleaning everything out of his marrow, making room for those new stem cells arriving in 2 days! They’ll have a nice new home to nestle into and take up residency to protect him for the rest of his life!
I had 2 lines of thought when I had my infusion of cells. The first was like little Minions infiltrating my body. Did you see the movie Despicable Me? Anyway, they are fun little characters and I’d laugh when I thought of them taking over.
In reality, they’re more like a united force of Imperial storm troopers!! Glad they are on my side! My husband chose to go with a military analogy. Oh well, whatever, I do have a new army at guard in my body.
LOL. Anyway, maybe your husband can come up with his own analogy for his new defense team.
It helps to think about what’s going on inside the body as the cells infiltrate his bones and settle into their new surroundings. It will take about 10-14 days before they set up housekeeping and get down to business making white blood cells again. (Engraftment) Then Richard will start feeling better. It’s going to be a long 2 weeks in between. He’ll be tired. He needs to expect that and not to fight resting.
How are YOU holding up??

@lodi Just checking in and giving both you and your husband virtual hugs. If everything is on track he’ll be entering the nadir period after all of his chemo/conditioning. This is a very difficult few days for most stem cell transplant patients. Do your best to encourage him through this. It can be very challenging with mouth sores, nausea and reactions to medications during this time. He needs to let his team know of any discomfort he is having. They’ll do their best to alleviate his symptoms the best they can. There are meds for all of it!!
Then miraculously, between 10 and 14 days, he’ll be doing much better as his new cells engraft and white blood cells charge to the rescue!

You two are in my thoughts daily as I send positive thoughts of strength and courage for both of you. Lori

Hi Lori-

You are so thoughtful thinking of so many of us; I don’t know how you keep track. Please forgive my very delayed response, overwhelmed.

Here’s where we are:
He had the conditioning chemo and the transplant, and all went very well with no complications! We were in the hospital one month and have been home for 2 weeks today. We are doing a magnesium infusion daily ourselves which was daunting for quite a while, but OK now. He just had his 5th BMB, and we are anxiously awaiting the results.

Life here is quite challenging as my partner does not like to follow orders. He insists on going for a walk alone and wants to me to go to the store without him. He is living very much in denial right now and doesn’t want to learn anything about options going forward. Before he and I researched extensively, and it was very helpful. He seems to be very depressed but won’t discuss it; he’s shut down. Watches Westerns all day in the den and sleeps (which is good), goes for a walk and that’s about it. He wants me to leave him alone.

I do everything imaginable to please him. He has always been a very difficult partner as he would be the first to admit. But now, he is far worse. He gets angry as he always used to if I slice the tomato too thick, or I don’t pour water in the correct glass. I run to the store for him almost daily since his tastes change so frequently. I spent two months total in the hospital with him; slept there every night. Nobody else I knew had done that. He wanted me there and I was OK with that.

But I am wondering about boundaries and what other people who love each other do in such difficult times. He is not interested at all in affection, which he always was. Just about everything annoys him. A peer-to-peer connection I have says he is very selfish and should be grateful as her husband was and is, but I don't think it's that simple. Am I expecting too much from him to have any empathy for my position? Is he expecting too much to think that I am here for his every medical and personal concern and it’s Ok that has no interest in me at all?

Would very much appreciate your valuable insight. We do have a therapist, but he hasn’t wanted to talk with her lately. He has told none of his friends. Neither of us have family we can communicate with, and we have no children. I have some good friends, but there’s only so much friends can understand unless they have walked the walk. I do have one very close friend who went through a transplant for Lymphoma, and she is helpful and she knows how tough my partner can be. He is a good person, very intelligent and at the core loves and appreciates me. And it’s been 30 years.

Hugs to you for all you do to help so many.

Lodi

Oh Lodi!! You can’t imagine my relief in seeing you resurface here! Honestly, I’ve been thinking about you so much, especially the past few days and wondering how everything’s been going.

Well, Pfhew…transplant procedure out of the way and you both survived living in the hospital! But as you’re realizing there’s a long road back. This is one helluva shock to the system and traumatic on many levels. So Richard is going to need some time to deal with everything that’s transpired.
Physically he’ll be pretty spent by the end of each day. I became a tv binge person during my recovery. That made me worry about my psyche! LOL. I was NEVER one to watch tv in the daytime!! But I felt like doing nothing other than sleeping and watching tv. I’m an avid reader but that exhausted me! Occasionally I’d get my little watercolor kit out but that minimal effort left me drained. So really, for this part of his recovery being 6 weeks out watching westerns and sleeping is pretty normal. HA, I watched HGTV and Hallmark Channel til my brain was mush!!

Lodi, you have been an incredible caregiver spending all that time in the hospital! That’s above and beyond the call of duty and truly exemplary. You’re so vigilant with your care and concern for your partner. So it has to hurt terribly to get this unexpected and short tempered treatment.

You’re in a tough spot with your partner becoming contrary though still needy. He’s sounding like a two year old with petty things like cutting tomatoes or water in the correct glass. In that case, I’d be implement my plan for dealing with my 2 year old (36 years ago). She’d pull that stuff at the breakfast table. I’d ask what she wanted for breakfast. She wanted Cheerios. I’d put those out…no no she didn’t want Cheerios!! Battle Royale! Well, pfft, I can outsmart a 2 year old! LOL. I put out 3 options for breakfast and let her choose. Life became much less combative.
If your partner doesn’t like the water glass you choose, have him get up and get his own water. He needs to move anyway to keep his blood flowing and build his stamina.
Give him a little longer leash. By doing that, you’re also giving yourself some time to heal and get back to YOUR former self. Self care is so important as a caregiver and you’ve not had that luxury for several months while being so strongly focused on your partner. Your actions show a deep and abiding love for your partner of so many years. You know he feels the same but for right now, he’s not able to reciprocate.

While I was recovering, as much as I deeply and profoundly appreciated everything my husband did I started to get a little irritated. By week 6 as I was gaining a little independence back, bless his heart, he still hovered! He’d been overprotecting me for months as we went through my AML treatments, transplant, etc. But now that was over and I just wanted to become ME again!!
His thoughtful over attentiveness at that point drove me crazy. He meant well but I’ve always been hugely independent and began to resent him being so nearby all the time. If I had a tickle in my throat and coughed, he’d quickly ask if I was ok! I’d try to do little things for myself and he’d run to the rescue. I longed for the half hour or so when he’d run to the grocery store so I had some alone time. Still slept while he was gone but I felt a little sense of freedom.
It’s a difficult transition from being gravely ill and the focus of so much attention to going back to ‘normal’ and now needing to push people away. I just wanted to be normal and not have people cloying to get close to me or to floof my pillows. LOL this was NOT the husband I was used to for 45 years!!!

I think maybe some of Richard’s denial is grief. And he doesn’t know how to deal with it. My husband told me more than once that it’s a good thing he wasn’t the patient or he’d have been horribly difficult to deal with. Hahah it was tongue in cheek as obviously neither of us would have wished this on our worst enemies. But it just shows that sometimes men don’t cope as well as we women do with difficult medical and psychological issues.

Richard is still on a lot of meds that can really mess with his overall being. And if he’s dealing with nausea yet, which is normal that has a huge impact on the happiness level. I think he’ll come around in several weeks. When he’s able to switch to oral magnesium, a suggestion is Magnesium Glycinate. It’s a much gentler form of Mag and won’t cause gastric issues. Run it past your partner’s pharmacist and team when the time comes. It was approved by my Mayo transplant team.

As far as options going forward, let this play out each day at a time. Richards will face things on a need-to-do basis. He’s being led by his team for the next 2 months anyway as they’re calling the shots.

We have a Caregiver group where I think we’ll find some empathetic members who might be able to give you some helpful feedback. Remember, I was the patient so my perspective is different. I’m great with transplant issues but I might suck with the caregiver aspect. 😉

I’m going to look for some links and members to bring into the conversation but in the meantime I have 2 links below just to get you started. You’ve got this Lodi!! I’m so happy to see you, I could reach through this screen with a hug!!
https://connect.mayoclinic.org/group/caregivers/
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/griffin/

Good morning, Lodi! Thought it was time to drop by to see how you and your husband are holding up. He should be making some headway by now after his transplant.
How are YOU doing?? I know this has been a difficult challenge for you too as a caregiver. Not every patient is the best when it comes to consideration of the person who is by their side 24/7.
sending a huge hug for support. Let me know how you’re both doing.