Day +154, Tuesday & my 5-month Transplantiversary!

On my 4-month post-transplant anniversary (or “transplantiversary” as I call it), I published a detailed post about All The Things going on with my body between months 3 & 4. This post will largely follow that format while focusing on changes between months 4-5. It’s been helpful for me to look back, review trends and note changes through my own writings; I hope that others going through Stem Cell/Bone Marrow Transplant may find this information helpful as well. Obviously, each transplant is unique and extremely different, but it has been also helpful for me to see and read about what other transplant recipients have been through. Thank you for your continued love and support throughout this process – it means the world! Additional thanks goes to my Teams at the NIH, and the most important, to my Anonymous Donor. Thank you for saving my life!

If you are interested in saving the life of someone like me, all it takes is 15 minutes of your time. Be The Match, the National Marrow Donor Program here in the United States, will reach out to you and send you a kit that includes a cheek swab – it doesn’t mean that you will need to donate bone marrow or stem cells; rather, if matched with someone fighting a rare disease, you may be asked to submit additional samples (all of which will be paid for by BeTheMatch), to see if you could be a suitable donor. I’m here today because my donor, a complete stranger, decided to sign up for the registry. Thank you for your consideration. And thank you to my Anonymous Donor!

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Hair: I swear, it grows over night!

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OK, it doesn’t really grow overnight – but I’ve noticed a huge difference between months 4 and 5 now. In addition to the hair on my head, my eyelashes and eyebrows are both growing back; so too is the rest of my body hair. Just the other day, I noticed tiny hairs on my upper lip, and no – there won’t be a close up of that. You’re welcome. And last week, for the first time since October, I shaved my lower legs and under arms. The electric razor was fine on the legs, misery on the arms – but regrowth is slow and I’ve got time to plan my next trim.

I have to say, though, I’m most pleased about my eyelashes…they were really thinning before I noticed tiny little lashes sprouting.

Skin: It continues to be dry and generally sensitive. A higher Tacrolimus level seems to exacerbate this; so too will atmospheric conditions, particularily sun, wind or cold. I continue to use Metronidazole to help with rosacea, acne associated with rosacea and general sensitivity. Otherwise, I use CeraVe pm night lotion on my face, which isn’t especially thick. For the rest of my body, I use VaniCream. For moments when I’ve got skin peeling – behind my ears, sometimes over hair follicles on my eyebrows, even my belly button, I’ll use petroleum jelly and that helps. And for the dry skin at the corners of my mouth, Angular Chelitis, I’ll use Nystasin while making sure not to aggravate the small cuts (keep lips hydrated, take smaller bits, chop up fruit, etc).

Very occasionally, if I’m noticing a rash that won’t go away after a day or two (or three) – usually on my chest – I’ll use hydrocortisone, or a light steroid cream. I can’t recall the last time I used Triamcinolone, or a more medium-duty steroid cream. As a rule, I try and let my body sort itself out before bringing in medications – a less is more approach, if you may.

Dryness: This section was included last month and remains pertinent through today. My skin, eyes, lips, the insides of my nose – all continue to be dry, though slightly lesser than the previous month. I’m not sure if this is a function of my body getting adjusted to itself post-transplant, the uptick in spring-like warmer weather, or perhaps both? Regardless, I don’t need to apply lotion to my shoulders three times per day (thankfully!) and a few times this past month, I’ve had Andy apply lotion to my back.

Food is still tasting dry, so I continue to stick with soups, pastas, less meat, and dishes that, in general, have a higher moisture content.

Gastrointestinal: Generally things have been looking better in this category. I learned recently that I don’t have C Diff, meaning there’s not an overgrowth of “bad” bacteria in my gut. In the past 2 weeks since I started taking Valganciclovir for a positive CMV virus lab result, my GI system has felt considerably better, meaning stools that aren’t as loose. My tummy has been a tad gurgly and I’ll have occasional cramping, but I also attribute that to adding new foods to my system.

Last night’s salad was a first, with tomatoes, peppers and pulled chicken (and it was delicious!) – but generally this month I’ve reintroduced things like apples, grapes…food items that don’t fall into that “Cook/Peel/Bake” category and that require a great deal of washing. My fruit/veggie baths of 1 part white vinegar + 2 parts tap water seem to do the trick, so far anyways. Generally I still feel safer eating foods that I’ve prepared myself at home, but am venturing out a bit. The things I miss the most include sushi, sushi rice, rare steaks, sushi and sushi. But I also really miss deli meat and sandwiches and because I refuse to heat my lunch meat, I’ll just have to wait a bit longer. It’s not forever, but sometimes it feels like a very very long time.

Favorite meals this past month? Definitely Avocado Toast…but also egg & cheese sandwiches on sourdough, steak and pepper fajitas, and Cinnamon Toast Crunch cereal. Yes, the last is a food-like substance and highly palatable – but on occasion, it has served as a great treat.

Hydration: I drink water ALL THE TIME. I just do. It’s sometimes exhausting, but I do it for my Kidney health and that is worth it. I also pee ALL THE TIME – but I know it won’t always be a thing (to drink and pee this much). The big culprit is my Tacrolimus medication, an immune suppressant that I stop at +6 months. That’s officially 4 weeks from now – I can do it!

For now, I’ll continue to drink 2-4 liters of water per day. And get IV fluids 2X per week after my Tuesday & Friday labs. Every bit counts!

Female/Intimate: Heads Up: If reading about this makes you uncomfortable – skip ahead.

I warned you!

OK – here goes –

I’m still not a good candidate for Hormone Replacement Therapy due to my blood clotting disorders. It sort of feels like my body had all things hormone-related yanked out from under it, and is just trying to catch up as best it can. Externally, the skin on my vagina/labia are doing much better, especially after using Replens (recommended to me by my OBGYN). The balanced moisture helps to decrease irritation, which helps with HPV spots and I’m generally more comfortable. Internally, I think my body’s lubrication seems pretty much normal. I follow u p with my GYN after my 6-month check at the NIH.

As for intercourse, I’m feeling much better overall. There’s still a bit of pain and discomfort, typically with the vaginal introitus (opening of the vagina), but internally I am feeling much better. It helps significantly having a very patient and understanding partner – Andy is wonderful. We continue to use Good Clean Love lubricant and switch positions, which also helps minimize discomfort. Overall, sex is much better than it was a few months ago and I think it’s just going to take time. And practice.

Infections: So far, the only antibiotic that I’ve taken has been Cipro (post-coital), which has protected my body from Urinary Tract Infections. I’m thankful this drug continues to work. I continue to have monthly breathing treatments of Pentamidine, which serves as a prophylaxis against pneumocystic pneumonia, a very dangerous and community-acquired infection that can be fatal in transplant patients. I will continue these treatments through July 2021. The BK Virus that plagued me so early post-transplant, thankfully, seems greatly diminished – I no longer take Oxybutinyn (bladder numbing) or Pyridium (UTI pain).

My CMV viral test returned positive a few times between months 4-5, and as such, we switched my anti-viral medication from Acyclovir to Valganciclovir. Thankfully, my last blood test revealed no active CMV in my system, and rather than taking Valganciclovir 2x per day, I only take it 1x per day. Currently, I don’t take Acyclovir; I’ll be curious if I ever return to this medication. Finally, the HPV – warts – that were on my feet pre-transplant and then disappeared after all the chemo, etc – are very slowly returning, the Tacrolimus (immune suppressant) keeping my new blood cells from really attacking and making these buggers go away for good. Hopefully after the 6-month mark, when I stop Tacro, my body will be able to mount a response.

Lymphedema: As long as my Kidneys/Creatinine levels remain close to normal and I continue to wear compression socks/night time wrap, my lymphedema remains manageable. The biggest correlation I noticed this past month with my lymphedema, was in the health of my kidneys. When my Tacro and Creatinine levels were high – my body had a much more difficult time processing fluids and waste-products, which resulted in overall fluid retention. I joked that my feet looked like “little boats” – but it really wasn’t that funny, as it was more a symptom of general/Kidney well-being. Now that my Tacro dose is lower, my Creatinine levels have also decreased and I’m not retaining nearly the same amount of fluid as before. And of course with Lymphedema, this was exacerbated in my lower right leg. It’s something I’ll just need to continue managing – and it can vary from one day to the next. It’s frustrating, but it’s also what my body is dealing with at the present.

Vitamin/Mineral: I’m still deficient in Vitamin B, so I take a B Complex vitamin. It’s still too soon to tell if this makes a difference with my overall well-being. Honestly, I think not. Long term, I’m trying to help my body top off its nutrient stores that were obliterated with chemo and months of buttered pasta (oh so yummy) by adding a wider variety of fuel sources and my B Complex. To be continued.

Mouth/Teeth: There’s nothing major that I’ve noticed, except that perhaps I’ve got a bit more moisture in my mouth. Or it doesn’t feel as dry as it did a few months ago. I use my regular toothpaste as well as PreviDent, a fluoride-toothpaste prescribed by my NIH dentist. I’ll be interested to see what the Dental folks say at my 6-month post-transplant check.

Emotional: I’m doing the best that I can. I work hard to manage the ups and downs that I experience….sometimes I just feel very impatient, other times bored, sad, frustrated, etc. But then I remind myself that those are also all human emotions, and that they’re not necessarily transplant-related. Sometimes I get really sad and wish that I could do more – a cafe, bookstore, go to the gym, travel, backpack a long trail – and I need to remind myself of what my body has been through. Other times, I wish I could give myself more grace when I’m tired or forgetful; I feel compelled to want to jump up and pitch in when I see Andy doing stuff around the house – because, again, I don’t want to be a burden or feel as though I’m not contributing. That’s less transplant, though, and more scars from my past. It’s a continual balancing act and one that I’m trying to adapt to as best I can. At the end of the day, we are all just doing our best – time for me to really pull on that self-compassion bit.

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I think that’s all for now. Tuesday in general was OK – labs and a doctor visit in the morning, followed by IV fluids. We’ve decreased my Tacro dosage again, as my levels continue to be slightly high. By the time I returned home, I found Harry – our little upstairs robovac – had once again flung himself down the stairs (presumably in search of Sally, our little downstairs robovac. They are destined to never meet). Thankfully, Harry was OK and had a productive nap on his charger. Sally remained unmoved in her corner – literally.

The rest of the day remained low-key. I grocery shopped, enjoyed salad for dinner and after pool (billiards, not swimming), Andy brought me the patch I earned during my match last week – 9 on the break. Again – I’m a terrible pool player and will likely never earn another patch, so there you go. Physically, I was tired – like I am today – my facial skin a bit more sensitive (likely from a bit of sunburn); so I read and watched a movie, curled in the recliner upstairs while the rain approached.

With that – enjoy the rest of your day!