I wanted to get a post out today – it’s been a hot minute (or four) since last week when I published, and I wasn’t in the best of moods. That’s life though. Tuesday, Wednesday and part of Thursday were rough; and I will do my best to be open, respectful and honest about times such as those (as I try to do with all of my posts). Plus, the 63 minutes I spent on hold with Southwest Airlines were perfect for reviewing, selecting and editing a few photos, and even writing a few notes.
Thursday morning I still wasn’t feeling great, a lingering weight on my shoulders from something that should have been resolved. Timing works in mysterious ways though, and Wednesday night was just not meant to be. After my HEW workout, I decided to splurge at….Target. Yes, the store was mostly empty, and yes, I wore a face mask and did All The Things a post-transplant person would do (ie hand sanitizer, social distance, etc). But I’ve got to say – I spent about 35 minutes perusing the two book isles, taking my time, feeling the paper beneath my fingers and the weight of the books in my hands, the sturdy binding flex and give upon opening. It was lovely. In the end I opted for two books, a Kristen Hannah pulp fiction and a memoir by a woman who faced leukemia who also had a physician named Dr. Holland. I know that my Dr. Holland at the NIH had a physician father who worked in cancer, I’m just not sure if this Dr. Holland is related. Anyway, her road trip in a VW van, as a part of her recovery, also caught my eye. It made me feel less alone in this post-transplant process I’m going through….like other people have been here too. Other people have survived and gone on to new adventures, have lived their lives and even written memoirs about it. Perhaps I can too.
After Target, I only meant to stop at home for a few minutes. While unpacking, I let the cats out (usually just Monster, but today all 4 – yes we have 4 cats…BananaBear, WheezyBear, Ali & Monster), and went to grab a pair of hiking pants from my upstairs drawer. Before I could make my way across the kitchen, Monster ran into the house, followed by all 3 other cats. They were accompanied by a high pitched screaming.
I was on the phone with my friend Jenni, who heard the entire grisly scene. Thankfully Monster dropped the very live and very large mouse she was carrying. Even better – the stunned not-so-little mouse was very much alive with only two small puncture wounds on its back. All cats looked at the mouse. And then at me. Jenni was silent. I looked at the mouse. And before it could escape further into the house, I covered it with a salad bowl and said unhelpful things like, “Monster, NO!” Jenni offered encouragement and said that she usually waited for her husband to get home.
So I put Monster outside.
And tried to figure out what to do with the bowl/mouse-under-the-bowl.
In the end, Monster remained outside while I took a paper plate and trapped the poor thing in the mixing bowl. The other cats didn’t seem to care, now that the screaming had stopped. I walked outside with the little (not so little) guy and released him on the other side of the retaining wall. He didn’t seem to want to leave the bowl, so I just turned the thing upside down and propped it against a rock. When he/she/they were ready, they could leave and have a happy life in the field.
Returning home, I washed my hands, let Monster in, bleached the crime scene and washed my hands again. Monster continued to linger.
Thankfully, in the end, all was well. (And Sunday night, when I returned for my mixing bowl, I was happy to find no dead mouse). I did end up sneaking in a quick hike at Bent Creek – 4 miles total, exploring the North Boundary Trail. Time in the woods is so good for me, just step by step, one foot at a time.
Returning home with fresh Spring Rolls from my favorite Asheville Thai place, Andy and I had a chance to actually talk and process everything that happened over the past 65 hours. It was a lot for both of us and we’re usually very good at being “there” for each other when times get tough. But when we’ve both had a challenging day, well, there’s just less to lean on. Afterwards I felt better and I think he did as well.
Then I opened the package from REI that arrived earlier in the day. In an effort to lighten my backpacking kit, I’m upgrading some of my gear. I think it makes sense – I love backpacking and being in nature – but it makes sense to have high quality but light gear, especially now that I’m north of 40 and my body is slowly getting stronger post-transplant. The packs that I’ve carried in the past have been medium-weight and I’ve just slogged through the difficult bits. Now, I want to enjoy my time backpacking, and if I can do that by shaving 5 or 10 pounds off my pack, by being smart with what I pack, having lightweight gear, and while being safe and having a good time….that’s less stress on my body and less stress on my joints. I’m thankful to my folks for their very generous birthday gift – it has allowed me to purchase my dream ultralight tent and splurge on an incredible sleeping pad that both Christine and my sister use. I call it their “princess pad” – and now I have one of my own!
And because backpacking stuff & fire is cool, I shared with Andy my new backpacking stove system. The MSR Pocket Rocket is super light, powerful & fits easily in my 650 ml Toakes pot, along with a small fuel canister. In the past, I’ve been hesitant to carry the extra weight of a stove/fuel while backpacking; post-transplant, I want my body to have the option of hot liquids and warm meals, especially should I find myself backpacking later this summer through Yosemite with Christine. Just a thought.
Friday started with a bang at HEW – the hero workout “Jack” looked easy, but at 12 minutes in (and 8 minutes to go), I felt like chucking my 45-pound barbell out the window. However, that would have meant me lifting the darned thing and heaving. What can I say, except that I gave it my best effort, I did the hard stuff – push press, box step ups, kettlebell swings – and was OK in the end. After, I returned to Bent Creek and did an 8-mile loop, roasting while climbing the higher parts of North Boundary Road. I also saw a giant pile of bear scat at the top, and frankly, I don’t blame the bear. It was a perfect place to poo, especially after a climb.
During my descent, I apparently came into a spot of reception just north of Ledford Gap – my phone and watch pinged about 20 times, and I had missed texts and phone calls from the NIH and Dr. W’s office. So I spent 20 minutes, calling and texting, thankful for a bit of service.
The best news was that my EBV numbers had decreased, and were down to 2.84, from 3.65 the previous week. Dr. W seemed relieved, as did Daniele at the NIH. I coordinated, made sure I had the right numbers, and celebrated during my final 45 minute descent to the car. The EBV has been on my mind – I’m so thankful that the viral load has decreased, and I’m hoping this means that my very new immune system is fighting it off and keeping things at bay. One can only hope. I have my usual Tuesday appointment for labs and follow-up this week.
The weekend was low key, relaxed. Saturday’s highlights involved strolling around an open air mall sipping a large raspberry icee (Andy was smart and went with the more modest sized Pina Colada), a quick visit with Andy’s mom Nancy to return a deck chair, and brewery date at Dry Falls in Hendersonville. I enjoyed their citrus IPA, a West-Coast styled beer with a juicy bite and thought it complimented the zesty shrimp tacos really well. After, we had a lovely surprise visit from Robbie and his 4-year-old son Micah, who loves kitties and unfortunately discovered why Monster is called, well, Monster. (Cats.) Thankfully no skin was punctured. All adults watched in amazement is Micah assembled his 3 puzzles in record time – I could have used his help when I was in the hospital, no doubt. Sunday was Andy’s birthday – we celebrated his 44 years with pancakes and finishing up a few small projects around the house. I spent a good bit of time mapping out a trip to Yosemite, exploring various distance options and feel better about my trip with Christine – it should be exciting! Later, the goal was to stay awake to the end of our movie – Twilight’s New Moon. Yes, we know the ending, but we are also stubborn. That’s what happens in old age, I suppose.
And there you have it! Photos & recap, et all.
I’m doing well – I’m still amazed that I’m OK with putting makeup on my skin….nothing intense, except for a bit of bronzer on the cheeks, and eye makeup. But two months ago, when even regular moisturizer hurt my skin, this would NOT have happened. I’m not sure if its because I’m off Tacrolimus, or if its because my rosacea medicine is doing the trick – my face skin just feels better. And that’s a wonderful thing! My eyes have been dry, yes – but they’ve also been OK. I continue to use the drops daily, express my eyelid glands and take good care of my contacts. And in this moment, off the top of my head – there’s nothing that really stands out to me physically. I still check my skin daily, continue to apply lots of sunscreen, and take all medications as instructed. Emotionally though, it’s a little different.
Every time I look in the mirror, its a reminder that I lost my hair because of the chemo I endured for my Stem Cell Transplant. All the things I do daily to keep my body OK, healthy, free of GVHD (insofar as I can “control” that) – all the little things are reminders that I’ve had a transplant. Little tubes of creams, or gels next to my side of the sink. Bottles of medication on my nightstand, eye drops ready to be administered. Sunscreen and face masks and a giant floppy hat. Emotionally, my transplant is a very real thing for me, and something that I’m only now beginning to come to terms with. I do my best to not dwell on what happened – but as I am very much living it, I’m also beginning to process it. And given all that has happened – I think this is pretty normal, and OK.
I hope that wherever you are, you are having a lovely day! Thanks as always for reading, and I very much appreciate the support, texts and kind words – especially after the previous post. Cheers!
I’m glad things got lighter and brighter over the last few days, and I don’t mean the hiking gear! We are having a warm and lovely day in Minnesota, and the whole week looks as if it will be quite pleasant!
Great to hear about the good times, good drink and good food. Wonderful to know your skin is doing well enough to use make up. And another HAPPY BIRTHDAY shout out to Andy. Have fun with Christine!
I had time tonight to read your whole transcript. Usually life affords me a quick glance at all that I follow, or am trying to figure out, but tonight I gave up my bedroom for my son’s gaming and am sitting in a fairly quiet place where I could read.
It really has not been that long since your transplant. I imagine processing the change is monumental as growing a whole new self.
I love you are going to Yosemite. It is one of my favorite places, but I have never hiked the interior. Too many bears for me..but I am excited to experience it through your hiking adventure.