Today marks 4 months! It has been 4 months since I had a life-saving Stem Cell Transplant at the National Institutes of Health, to fight my GATA2 Deficiency, a rare genetic disorder I was born with. Without the transplant, my body would likely have succumbed either to an opportunistic infection, bone marrow failure or an aggressive blood cancer. I’ve been lucky up to the point of my transplant, thanks to modern medicine. Thanks to the NIH, BeTheMatch, and my Anonymous Donor, I am here now and will hopefully look forward to a long and healthy life.
I wanted to take a moment and give an update systemically, about how things are going with my body; I hope to continue posts like this on a monthly basis. The idea for this was brought about after witnessing and feeling so many changes happening with and to my body between months 3 and 4, and I can only imagine how much things will continue to change moving forward. This is all new to me – perhaps other transplant patients may one day find these posts helpful as well.
Hair: It’s growing! It is weird to be outside and feel the sun on my (less) bald head. It’s even weirder to drive with the windows down and feel the breeze moving across my duckling fuzz (as I call it). Between months 3-4, I really noticed a tremendous amount of hair growth – on the top of my head, although the crown is still less fuzzy than the rest (think of an old man hairline), and even smaller hairs beginning to grow on my legs, arms and everywhere else. My eyebrows are beginning to fill in and I don’t know what’s more exciting – my eyelashes or the hair on my head. That’s a tough one. But my hair is here, it’s growing – and I’m excited to see how it continues to come in.
Andy think it will be an auburn brown. I’m holding out for hope to be the natural blond I always have been. Later in life, there may have been a few chemical alterations to help keep me blond, but that’s besides the point.
Skin: My skin continues to be dry. But I’m not struggling with any major rash or Graft vs Host Disease, so that’s good. I apply Metronidazole 2X per day for rosacea – I’ve noticed that if I miss even one application, my skin becomes highly sensitive, to the point where applying moisturizer burns. Suffice to say, I don’t miss applying my Metronidazole. The face lotions that seem to work the best for me are 1) CeraVe night lotion and 2) Eucerin Urea Repair and haven’t caused any issues (aside from burning upon application when I miss my rosacea medicine). I use Vanicream on my body 2X per day, paying special attention to my shoulders, upper arms and chest; it seems the areas where I had previous skin damage (sunburn, windburn, etc) are more sensitive now, and need additional cream. I’m happy to oblige. Occasionally I’ll have Andy help with my back. Vanicream sunscreen has also been helpful, and I anticipate I will use this more as the weather warms. Finally, Replens is a great non-estrogen/non-hormonal solution for intimate areas.
I rarely need to use Hydrocortisone or Triamcinolone at this point, both of which are topical steroid creams, but I have them just in case my skin develops a rash. Both creams tend to thin the skin, and even if a small rash develops, I’ll usually just keep an eye on it, make sure to keep the area moisturized. If the rash continues to grow or gets itchy, then I’ll re-evaluate and start with Hydrocortisone (the lesser potent of the two). I guess I’m trying to stay on that “less is more” approach. My body has been through so much. Lastly, I apply Petroleum Jelly as needed – rougher spots, sometimes behind my ears, and even over my lips and the cracks on the sides of my lips before bed.
Dryness: I wanted to put this in – yes, my skin is dry, absolutely. But so too are my eyes, mouth, lips and nose. Food texture and taste are different still, and meat in general just feels and tastes wrong. I wish I had another word for it, but I don’t. Its actually hard for me to eat, unless disguised in something else (turkey in soup, pulled chicken in Mac & Cheese, for example). Foods that tend to be more dry and nearly impossible to eat, turning to a sawdust-like consistency in my mouth. I tend to stick with soups and things with moisture. I also love stronger flavors (still), but have to be careful of overly spicy things.
I’ve been wearing my contacts a tad more, though after a few hours my eyes can get super dry. I use moisturizing drops as needed; it would be more helpful though, if I was actually consistent with using my Restasis drops. That’s the one medication I tend to just plain forget.
Gastrointestinal: No major issues here, aside from a blowout while hiking the other day. Eh. I scaled back the Colase and hopefully that does the trick. Seriously, my GI system has been OK. I take medicine to help with acid reflux, and while I still experience a wave or two of nausea, I’m not currently taking anti-nausea meds.
Since returning home on Day +101 (and even before then), I’ve been adhering to the “Cook Peel Bake” that my Minnesota-based hematologist once told me about. I’ve been sick from food once, tossing my cookies after eating takeout Pho, in spite of reheating EVERYTHING after getting home; I don’t want that to happen again. My understanding is that once I’m off immune-suppressive medications (just the Tacrolimus at this point) and 6-12 months post-transplant, I’ll have a bit more freedom to eat things like sushi, strawberries, apples with the peel and pretty much anything that’s not CookedPeeledBaked. I am looking forward to that day.
In the interim, I’ve discovered a love for baking. And I’ve got a good helper.
Hydration: I’m still practicing it, “aggressively” per the NIH’s discharge notes to my Asheville Team. I had some good suggestions from the lovely folks in my Better Together Support Group, and have since invested in a Brita Filter and brightly colored 40 oz Hydro Cell water bottle. The aim is to drink 3-4 liters of water per day to protect my kidneys, and at this point, I’m usually on track.
I also continue to drink tea…a lot of it. And have been delighted with the occasional Diet Coke; carbonation is wonderful, but too much gives me reflux. To that point, I rarely consume alcohol – a beer sampler the other night with Andy, and the occasional glass or two of champagne. Mostly, I stick with water and tea.
Female/Intimate: You can skip to the next heading if this makes you uncomfortable – just a heads up. Not everyone wants to read about this, but on a personal note – the few resources that I’ve been able to find have been helpful.
OK – because of my blood clotting disorders, I’m not a good candidate for Hormone Replacement Therapy. And as such, parts of my body feel as though the rug was just pulled out from under it. Externally, the sensitive skin of my vagina and labia can get super dry, painful, itchy and uncomfortable. Replens has helped significantly repair damaged tissue and make me more comfortable in the process. I also have a few HPV spots that have returned, which is normal when I’m on Tacrolimus. At my OBGYN appointment two weeks ago, the nurse practitioner noted that my skin remains lighter in color (indicating a lack of estrogen production), but that internally, my vaginal walls were lubricated and looking OK. Does this mean that I’m going through menopause, or that my period may return? Short answer: we just don’t know. As of now, I am not having a period. And I NEVER though I would say this – but I sorta miss it. Not the bleeding part, of course not, but I miss the hormones that my body produced that helped keep my skin and tissue lubricated and comfortable.
As for intercourse, that’s slowly getting more comfortable and better. I’m thankful to have a wonderful and understanding partner – I can’t say enough good things about Andy. It also helps to be in my own home, where it’s just the two of us. Sex in a tiny apartment with your Mom in the next room is just not very fun (sorry Mom. Hopefully you’re not reading this). Anyway – Andy continues to say that I feel the same as I did pre-transplant, which is so weird to me. From my perspective, I just feel dry, and intercourse can be painful. Starting off slower seems to help, and we’ve experimented with a few different positions. It’s a work in progress and as Daniele keeps reminding me, practice makes perfect. What’s even more important, though, is the communication between Andy and myself. He makes me feel comfortable and I trust him. I’ve never felt judged talking about sex or bringing anything up with him and vice versa. I can’t tell you how fortunate I feel to have a partner like him. Plus – we just have a lot of fun together, and that’s a really nice thing too!
Infections: Rolling into month 4 of being on Tacrolimus, I’ve noticed that all the warts on my feet that went away post-transplant, are very slowly returning. It is still nothing compared to what I had before, but it is indicative of what’s happening internally. Even though my new stem cells are growing and reproducing, and my blood counts are steadily rising, these cells are unable to fight anything off because of my immunosuppressive medication. Because of this, I continue to have a monthly Pentamidine breathing treatment, meant to act as a prophylaxis against a dangerous type of pneumonia.
I’m doing my best to stay as healthy as I can, always wearing a mask, etc. And it actually helps that everyone else is wearing a mask as well (at least they are supposed to). Occasionally I’ll get sniffles or a runny nose; often in the middle of the night when I use the bathroom, I’ll also need to blow my nose. Sorry, Andy. It could be allergy-related, we do have 4 cats, after all. But it could also just be dust or pollen or anything in the atmosphere. I’ve taken a Tylenol on occasion when my head hurts, but that’s about it.
To note: per my NIH Protocol, I stop taking Tacrolimus at month 6, or right around Day +180 as long as there are no major issues with Graft vs Host Disease. That’s approximately 16 lab draws away (not that I’m counting).
Lymphedema: I haven’t talked a ton about this, mostly mentioning that I wear compression socks during the day (sometimes) and a compression wrap at night (as needed). Especially now, as I consume 3-4L of water per day, I feel like I also retain fluid. Having it pool in my right leg is uncomfortable and doesn’t look healthy. I know the damage done to my veins and lymphatic tissue will not go away simply because I’ve had a transplant; in wearing compression gear, it is my hope that I can continue to manage my limb swelling.
Vitamin & Mineral Deficiency: Only yesterday I learned that my Vitamin B12 is low. I’m still waiting for my Tuesday appointment with Dr. W and to hear back from the NIH on a recommended course of action. My Iron and Folate levels were ok, but my Ferritin was slightly elevated (likely due to systemic inflammation). We had this tested because I’m dealing with Angular Cheilitis, or cracks at the corner of my lips, and low B12 can be a culprit. Because I’m taking an anti-fungal medication, my Team does not believe this to be fungus-related.
Mouth & Teeth: Aside from probably needing to re-establish my flossing habit, my teeth and mouth are OK. I brush 2X per day, and also use a prescription fluoride toothpaste from Colgate called PreviDent. Dry mouth (which I’ve had since chemo and my transplant) can lead to a breakdown of tooth enamel. This can very rapidly lead to cavities – which I don’t want. At my +90-day dental appointment at NIH, the dentist recommended I start brushing with this in addition to my usual routine.
Emotional: Having a Stem Cell Transplant isn’t easy, and it’s not a decision to make lightly. Add in a global COVID pandemic, and it’s quite the emotional undertaking. I’ve certainly faced my share of challenges in life, but I’ve also had some wonderful support along the way. I still meet with my therapist weekly, have my Better Together Support Group every other week, and Jennifer – my NIH Social Worker – is always available. I’m also in a stable home environment with a loving partner, which is the best. I’m very thankful for this.
Between months 3-4, the biggest thing I’ve faced was the return home from Bethesda. The NIH was safe, meaning that my Team of Experts were there should anything happen. Also, it was rare for me to see anyone without a facemask. That being said – my home is here, in Asheville and while the NIH felt safe, it was never meant to be a forever situation. I’m grateful to be home. Yes, it’s weird to see people without face masks, and it’s different to not see Daniele, Erin and Dr. Arnold twice per week. But I also know that they are still on my case, working with my AVL Team – and that brings me comfort. I’ll usually text Daniele and Erin once or twice per week – both lab results and Monster are the subjects. I think they like the cat pictures more than my lab results.
From a personal standpoint, I’m adjusting to dealing with everyday stuff… an error in a bill, forgetting something upstairs after I’ve already made 3 trips up and down the stairs, meal planning, etc – that “life” stuff that I just didn’t have to manage away from home. I would LOVE to got out and do stuff – sit in a coffee shop and read, go to a movie, watch the sunset from a rooftop restaurant with Andy – but that’s not an option because of COVID, not yet anyway. At first, returning home, I didn’t really have a lot of patience with myself – I’m working on that, trying to be kinder in my self-talk, more gentle and perceptive to my body’s needs. I would love to hike every day – but from an emotional perspective, I’ve had to let that go because physically, there are times when I’m just exhausted or my skin really hurts or its raining for the 5th day in a row. And that’s OK – the trails and mountains aren’t going anywhere. I’m learning that my body isn’t the same it was when I left and that it will take time to regain strength. But in the end – it will be OK. The fact of the matter is – because of my transplant, I have time. In that sense, I also practice gratitude on a daily basis.
OK – for now, that’s all I can think of body-wise. GENERALLY, I feel like I’m doing well, and that the issues I’m dealing with will hopefully diminish over time. I’m really excited about my progress and am looking forward to observing even more changes from months 4-5. Maybe I’ll be a brunette? Hopefully not – I’m sticking with blond. If you’ve made it to the end of this marathon post – many congratulations! I can’t believe I’m still here either, but there you go.
Happy weekend to All!
Thank you for your account! It seems like forever since we were in Bethesda together. I’m happy things continue to move in a positive manner. So greatful for all you have in your life now!! And, certainly, so greatful for Andy and the kitties❤️ Continue your strong path to health. I love you so much.
That is a lot. It can’t be easy but you are making great progress. Good luck in remaining blond.