Holy Cow! It’s been 6 months (to the day!) since I had my Stem Cell Transplant. This post will be a bit of an update and recap about where I’m at in thus process, as well as how I’m doing. I did something similar for my 5th Month Transplantiversary and my 4th Month Transplantiversary – feel free to check them out.
I want to thank the National Institutes of Health, especially the GATA2 Transplant Team and GATA2 Study Team – their research continues to save lives. I’m grateful to ALL my clinicians, up at the NIH, and here in Asheville – The Family Health Centers, Asheville Hematology & Infusion Center, Hendersonville OBGYN and Advanced Dermatology & Skin Care Center.
Additionally, I’m grateful to my family and friends. I’m so thankful for Andy – it takes a lot of courage to be in a relationship with someone going through transplant and his being here during this process speaks volumes about the kind of human he is. It’s been challenging not seeing my folks, Aunt Lucy and KK’s family – I miss them all and while I’m excited for my parents to visit mid-May, I want very much to hug everyone! I also very much appreciate the folks who read this blog – after Monday’s post, I was deeply touched by the outpouring of support. Some of this is transplant, other bits are just life stuff but exacerbated by transplant – the kind and thoughtful words meant so much. I read all of your comments – thank you for taking the time, I appreciate you.
And finally – to BeTheMatch and the National Marrow Donor Registry – through their work and effort, lives like mine are saved EVERY DAY. Please, if you are inclined, take 15 minutes to fill out this form online. You will be sent a kit to swab your cheek, and one day, your HLA cells could potentially be matched with someone in need of life saving bone marrow or stem cells. Or your cells may never be a match, and you won’t need to do anything – but at least you tried and that means so much!
Most of all – thank you to my Anonymous Donor. It’s been 6 months since your stem cells saved my life – I’ve never met you, but I think of you every day and the sacrifice you made for the life of a stranger. I can never thank you enough.
It continues to grow and grow and grow – overnight! Even between months 4, 5 and 6:
One thing that hasn’t changed: my love of comfy sweatshirts! But hair growth is now a thing, and I’m excited to see what 7 months look like!
This has been likely the toughest thing for me, between irritation, burning, tightness, dryness, rosacea, pustules, etc. Honestly, I don’t mind wearing a mask for this fact, but I’m fairly certain that my mask aggravates my already sensitive skin. Not wearing a mask is not an option.
Between months 5 and 6, my rosacea irritation increased and at my 6-month NIH check, I was diagnosed additionally with dermatitis. The Cleveland Clinic defines Dermatitis as a “general term for skin conditions. Examples include eczema and dandruff, and are characterized through red rashes, dry skin and general itchiness, amongst other things.” Obviously, I’m paraphrasing. The rosacea has remained on my face, and small patches of dermatitis appeared on my scalp, chest and belly button.
For my scalp, I was prescribed Ketoconazole Shampoo 2% (definitely does not smell as good as Aveda Shampure), and my chest/bellybutton area is treated with Desonide Cream 0.05%. So far, both seem to be working effectively, and all the redness from my chest has disappeared. My hair/head is still flaky, but I figure that will take forever, anyway just because of the number of follicles. For my rosacea, my AVL dermatologist prescribed a compound of: Azelaic Acid/Medtronidazole/Ivermectin 1%/1%/15% – this has helped tremendously. I’ve been using it for about a week and my skin feels less tight, less oily, applying facial moisturizer does not make my skin burn and I don’t have small pimple-like pustules. Yes, truly this product is wonderful!
For a daily facial moisturizer, I use VaniCream Lite, and for the rest of my body, VaniCream Body Lotion. Petroleum remains a wonderful alternative for extra dry skin behind & in my ears or between my eyebrows. And finally, my Angular Chelitis (cracks at the corner of my mouth) was blasted with Clotrimazole and Betamethasone Dipropionate 1%/.5% cream; this too seems to be helping as Andy couldn’t even see any cracks or red lines next to my mouth.
Finally, at my 6-month NIH Dermatology visit, the Team noted no visible signs of Skin Graft vs Host Disease. This is great news, but something I’ll need to be aware of moving forward.
I’ll keep this section in, because I have written about it so much.
Skin: Dry wasn’t the right word….instead, I think that “tight” is more of the sensation I’ve been feeling. I’m not sure if this is a function of the immunosuppressive medication (Tacrolimus) that I no longer take, or what – but my skin does not feel dry, per se. It is most definitely flakey in places – bellybutton, chest, hair – but not dry.
Eyes: Yep – they are dry, but I’ll discuss in the eye section.
Mouth: Food still tastes dry at times. At the NIH for my 6-month check, I had 2 biopsies of my mouth to check for GVHD, one biopsy site over my salivary glands, the other on my inner cheek. Mostly food is OK – I just stay away from things that are dry…old bread….meat that’s overcooked, etc.
Over the past few weeks, I’ve continued to test my GI system. First, with a few salads and fresh fruits and veggies while I was still on immunosuppressive medications. Last weekend, though, last weekend was huge. After being taken off of Tacrolimus, I was given the “All Clear” to eat whatever I wanted (within reason, of course….as Dr. Arnold put it – you wouldn’t eat egg salad that’s been sitting out on a table for several hours…that’s a recipe to make anyone sick).Visiting our Foodie friends after getting the “all clear” – I ate SO MANY DELICIOUS FOODS THAT I HAVEN’T HAD IN SO LONG….strawberries, blackberries, blueberries, ahi tuna, oysters, lemon meringue, ceviche, fresh salsa, etc. By Sunday morning, my stomach felt a bit wibbly, and I can’t swear that my skin pallor wasn’t tinged with green. Everything tasted delicious and ultimately, I was OK.
That being said – I think I’m going to lay off the oysters and stick with more normal things like sushi or poke. OK, yes – it’s pretty much the same….but I won’t eat it in the quantity that I did Saturday night.
The other fun news, is that I’ve started drinking coffee again! That’s been the largest, most consistent difference between months 5 and 6!
I continue to drink A LOT OF WATER. Or as Andy would say, “a fuck-ton of water!”
But I’ve also added 3 or 4 fizzy drinks per week – Diet Coke, soda water, etc – and I’ll indulge on the occasional glass of wine with company. I continue to drink herbal teas, lately the echinacea “thoat coat” has been my favorite – likely due to allergies.
OK….same as last time – if you don’t want to know, just don’t read. Simple.
Last chance –
Physically, as long as I continue to use Replens Vaginal Moisturizer, my entire vaginal area feels so much better. There’s less irritation and what felt like scabs before, are no longer present. I still have several HPV that can be removed by my OBGYN now that I’m off Tacro, so that’s a great thing.
Throughout this time, intimacy and sex have been a bit of a learning curve. Right away – let’s just mention that my hormones have changed completely and I haven’t had a period in 6+ months. I may or may not be going through menopause and this in turn has significant impacts on my body. For a while, specifically after getting out of the hospital and living in Bethesda, I really didn’t feel like I wanted to have sex. Between the UTIs, my BK viral infection, major vaginal discomfort, and pain during intercourse, it was challenging. But I also recognized that sex is a very important part of our relationship (its not the only thing, of course), and I wasn’t willing to loose that just because I’d had a Stem Cell Transplant. Andy felt the same, except he didn’t want to be the “schmuck” who pushed sex on his newly transplanted girlfriend.
So we’ve adapted. I’ve made a concerted effort to come onto him at different times, letting him know its OK to have sex, even if I didn’t feel fully ready to go. And he’s done the same. It’s always ended with the two of us having fun, and enjoying our time together. He continues to be patient and uses copious amounts of high quality lube, even though he claims that I feel like my pre-transplant self. Our sex life isn’t the same as it was pre-transplant (I may have called him a Sex God, but that’s a very different story), but I’m really grateful for the effort the two of us are making. Relationship-wise, it’s so important.
Last night, Andy and I had a conversation about where we stood/what we felt about this. From a very very personal standpoint, achieving orgasm has continued to be a challenge for me; prior to my transplant, this wasn’t an issue. Sex is still painful at times – I have to really focus on relaxing my body; its not always conducive to achieve climax when one is in pain. Sometimes I’ll use a vibrator and that can help. Additionally, our foreplay as a couple has changed because of my vaginal sensitivity and a few spots of HPV – I know Andy wants to do more, but I’m the one who pulls away because its uncomfortable. I think this is tough for him – he feels as though he can’t please me, but I’m the one whose body has changed. This will just continue to be a work in progress and we are both curious about how my body will respond now that I’m no longer taking Tacrolimus.
I always return to the fact that I’ve got a very patient, loving and kind partner in Andy. If something doesn’t feel great – we’ll talk about it; likewise, if something feels great, we’ll talk about it. Communication, non-judgment and honesty have been key factors in sharing this road with Andy. I love him very much and I’m grateful that we are working together on this.
Now that I’ve had my 6-month post-transplant check at the NIH and am officially off of Tacrolimus and all immunosuppressive medications, my NIH Team wants me to have a Colposcopy, or a cervical biopsy. Many GATA2 female patients have abnormal Pap smears, meaning the cells on their cervix are abnormal. For the past 20 years, I’ve had abnormal Pap smear results; so much so that I’ve also had multiple Colposcopys. While on immunosuppressive medications, this was not a great option for me; now that I’m off, I’ve been given the “clear for launch”, or whatever we want to call it. I’m getting ahead of myself, but should the ColPop results come out cancerous, then we will likely proceed with a LEEP procedure. Eventually, my new and healthy blood cells will be able to attack and hopefully fix any abnormal cells before they turn cancerous.
I’ve had several small skin issues emerge over the past few weeks…Wilma (a cyst on my abdomen), along with dermatitis and a few infected spots on my fingernails round out the bit. Add in the warts that are slowly growing on my feet, and Cipro – an antibiotic I take immediately after intercourse – and there’s definitely a few things that my body is dealing with.
In addition, I continue to inhale my monthly breathing treatment of Pentamidine (pneumocyxtic pneumonia prophylaxis. I will stay on this through June, a full three months after I stopped Tacrolimus. I also take Acyclovir 800mg 2x/day to prevent viral infections, and Fluconazole 400 mg 1X/day to prevent fungal infections. At my 6-month NIH checkup, I was prescribed 100 mg Doxycycline for 30 days to help with the fingernail bed infections. And yes – this suddenly feels more and more like an episode of House. To my knowledge, those are the biggies.
When my Tacro level is within “normal” and my Creatinine is just slightly elevated, this in turn can exacerbate the lymphedema in my lower right leg. Regardless of the medical hose and compression stockings, if my Creatinine levels are high, my lymphedema is more active. My compression socks have become extensions of my skin at this point and I’m willing to put up with the marks against my skin, as long as the swelling stays down.
Thankfully now that I’m off Tacro and my Creatinine level is within a normal range, my lymphedema seems to be doing OK. Confessions: I’m still wearing my sock, though.
I’ve noticed that my mouth has been steadily increasing in its moisture content, and doesn’t feel nearly as dry as it did immediately post-transplant. I still struggle with eating foods that are very dry – crackers, old bread, dry meats – so I err on foods that have high moisture content – fruits, soups, stews, sautéed veggies, etc. My biopsy sites from the Dental GVHD Study last Friday are healing and aside from the overly aggressive teeth cleaning, my mouth/teeth seem to be doing OK. I’ve been given the green light to follow up with my regular dentist.
As I was proofing my post for the last time, I noticed there was no “eye” section – bah! Last thing I wanted to do was to make this longer – but this will be short and it’s important.
My eyes are still dry, but showed little inflammation during testing. My medicated eye drops have been upgraded to Cequa, which I take 2X per day and help with tear productions. I also express my Meibomian Glands, which adds helpful oils to my eyes; the NIH Ophthalmologist discovered these important glands blocked. Helpful instructions and video here. I wear both my glasses and contacts, about 60-40 at this point. Bright light and extremely sunny days still hurt my eyes a bit, but overall they are much less sensitive than they were a few months ago.
As with anything in life, there are ups and downs.
A few weeks ago, I just needed more. MORE. Hiking was lovely and had been great up to that point, and I’m not sure what prompted it – but I just wanted to take back my strength. I wanted to empower myself – so I returned to Hard Exercise Works (HEW), my gym from before my transplant. And I think this was huge in terms of my recovery: my body had been doing well, and my brain just needed more.
Finding a good balance has been key, and I’m not sure that I even know the “best” way to do this, especially during a global pandemic. Every day I wake up and check in with my body….I try and determine its wants and needs, assess fatigue levels, and then make a determination on what I’m going to try and do. Sometimes it works, other times I’m exhausted – but I feel good in the trying, in the putting myself out there. I feel good about doing little things every day to make myself stronger.
I continue to meet with my NIH social worker, have weekly sessions with my therapist, and attend bi-monthly virtual gatherings of my Better Together Support Group. Throughout this process, all three of these have been tremendously helpful – especially when I’m really struggling, and I don’t know how to put my feelings into words. Sometimes I have a lot to say, and other times there’s more silence – but that’s OK. This is all a part of the broad arc of my transplant and I’m grateful for these valuable resources.
Current Medications and Regiments:
This is a new category, but is helpful for me to keep everything in order.
- Acyclovir 800 mg 2X per day (Anti-Viral, am & pm)
- Fluconazole 400 mg 1X per day (Fungal Prophylaxis, am)
- Xarelto 20 mg 1X per day (blood thinner, am)
- Pantropazole 20 mg (acid reduction, am)
- Zyrtec 10 mg 1X/day (allergy, am)
- Doxycycline 100 mg 1X/day (bacterial infection of skin, pm)
- Pentamadine 300 mg (inhaled breathing treatment, every 30 days)
- Cipro 250 mg (as needed, post coital prophylaxis)
Topical Medications: Clotrimazole and Betamethasone Dipropionate 1%/.5% cream
- Ketocanazole Shampoo 2% (dry scalp, per day)
- Desonide Cream 0.05% (dermatitis, 2X per day)
- Azelaic Acid/Metronidazole/Ivermectin 1%/1%/15% (rosacea, 2X per day)
- Clotrimazole and Betamethasone Dipropionate 1%/0.5% cream (Angular Chelitis, 2X per day)
- Cequa Cyclosporine Ophthalmic Solution 0.9% (RX dry eyes, 2X per day)
- Replens (eye lubricant drops, as needed)
I’ll likely remain on Acyclovir and Xarelto long term, and per discussion with Dr. W and the NIH, stop Fluconazole when I finish up with my last course of Pentamidine in June. My Doxycycline prescription is only for 30 days and already it is working to help my infected nail beds. Additionally, my reflux medication, Pantropazole, will be ending on or about May 1 – long term effects can include decreased bone density which isn’t cool. I’m not sure about Zyrtec; once the major pollen offenders run their course, I’ll see what happens with my sinuses when I got off the medication. As for Cipro – at some point I’m hoping that I won’t need to take an antibiotic after having sex, but for now, I’m great in preventing UTIs if I can.
The topical medications will be interesting – I’m curious about how my skin responds now that I’m off Tacro, as as my new stem cells get used to their new body (so weird!!). For now, I’ll continue to do what’s comfortable – wear lots of sunscreen, continue to use my eye drops, and do everything I can to keep my skin as non-irritated as possible.
OK! Mega post – congratulations if you’re still here! I started yesterday (Tuesday) and now it’s Wednesday. Phew! I hope that wherever you are, life is good! Thank you for your continued love and support!
Wow! How do you do it? All the medications boggles the mind! Just keeping them straight is a real achievement. You are a true and courageous survivor. We are all so proud of you.
Congrats on this anniversary! I’m glad you are feeling better than yesterday, and I hope that all you’ve accomplished in 6 months makes up for a poor showing at the pool table.