Life on the Outside (Days 21-30)

Wednesday, June 19, 2024 to Friday, June 28, 2024 – Days 21-30

It’s been over a week since I’ve made it to the outside. It’s a big milestone to leave the hospital, and often times we think that the patient is so much better at this point, but that’s the farthest from the truth. I am so tired. In some ways, I am more tired than being in the hospital.

Don’t get me wrong, I am enjoying the lack of interruption of every 4 hour vitals, 5 am labs, 6 am medications, etc. I am loving my mom’s cooking (the smells), although I’m so nauseous, have no appetite, and my naked tongue can’t taste anything. I’m enjoying sitting on a couch and not a hospital bed. I’m enjoying walking around the Bethesda downtown area after the sun sets at 8:30 pm.

But I am still so exhausted. I have so many arts and crafts at my disposal that I got from the hospital, but I’ve yet to do a single one of them. The chemotherapy makes it so that I can’t concentrate – I feel like I have a single brain cell that isn’t functioning very well at all. I also haven’t watched any of the recommendations of shows that everyone has so kindly offered. Instead, a lot of my days are spent sleeping and eating. On days I’m not in clinic, I eat breakfast at 7am, take my 8am medications, go back to bed, take my 9am medication, go back to bed, wake up and eat lunch, take my 12pm medications, take an afternoon nap, take my 2pm medications, try to go exercise at the gym, take a shower, eat a snack, lie down and rest as mom prepares dinner, eat dinner, take my 6pm medications, rest after dinner, take my 9pm medications, and go to bed. It’s not quite as boring as it sounds – eating feels like a job right now as I have no interest in food.

This last week I’ve had to go into clinic everyday. On Monday I got blood drawn and saw my BMT team – all counts are trending in the right direction! My platelets were even 120! On Tuesday, I did a repeat hearing test. The good news is that the hearing I lost in my right ear seems to mostly be in the normal range now although it is still slightly worse than my left year and seems like it’s permanent. Also, unfortunately, my right eardrum is not vibrating normally, so I’ll have to continue close follow up to ensure that it doesn’t impair function in the future. I do still feel like the right ear is muffled when people talk but perhaps I’ve become acclimated to this.

Other than fatigue, the other main symptom I’m experiencing is menopausal symptoms. Unfortunately due to the chemotherapy (busulfan) that I got, I’m now experiencing primary ovarian insufficiency (POI), also known as premature ovarian failure, which basically means my ovaries are no longer producing estrogen and progesterone. I won’t get a period anymore. It also means I’m experiencing all the signs and symptoms including hot flashes, chills, night sweats, sleep problems, vaginal dryness. It’s highly uncomfortable. I saw OBGYN on Wednesday this week and I’ll be starting hormone replacement therapy indefinitely to help with these symptoms. It really sucks to be a woman sometimes.

On Thursday, I had to get IVIG today so it was a really long day from 8am-5pm I’ll probably have to get IVIG for the next year or so. While the myeloid line (neutrophils, platelets, red blood cells) start growing quickly after engraftment, the lymphoid line (B cells and T cells) don’t come up for almost a year so I’ll need “help” with IVIG during this time as my body learns and starts to make B and T cells.

My family also has been keeping busy. Mom spends all day cooking for me as the transplant books says to prepare fresh food as much as possible. Dad helps with doing laundry as we wash my clothes everyday and the sheets a few times a week. Many of the drugs I’m taking are considered hazardous so we wash my clothes separately. Mom also helps me shower since I still have my central line in and I can’t get it wet. I sit on a stool in the tub and mom will pour water over me. Gordon helps with a lot of the grocery shopping. Since the fridge isn’t a full size one, we aren’t buying our normal amounts of food so we try and go shopping every day or every other day. Everyone has their own tasks and I don’t know how I’d be able to get through this without every single one of them pitching in.

When I do have downtime, I have been spending a lot of my time looking at pictures and videos. Most of them are of Maple. Forrest and Neesha send me pictures and videos often every day, and they’re what keeps me going. I can’t believe it’s been two months since I’ve seen her, and it’ll be another 2 before I go home and can see her again. Her hair has grown in since Petco gave her a terrible haircut so she looks much cuter again but her silly personality is still there. The pack has so kindly welcomed her into the family, and it’s so cute to watch 55-pound Maple play tug with 10-pound Neville. Neville, a dachshund, is a relentless tug-o-war challenger, and he clearly doesn’t realize how tiny he is compared to Maple. Coco is a lone ranger but they all stand by the window and make sure the household is protected.

But I’ve also spent pictures looking at the various seasons of my life.

It’s hard not to get really emotional looking at these pictures and wonder if I’ll ever make it back to a person I recognize in the mirror. I’m doing my best to eat healthy, exercise, and follow all the rules post transplant, but the journey to whom I recognize seems so far off, sometimes it feels unattainable. I know it’ll be a really long road – I just kind of wish there were a shortcut there, but nothing easy in life comes quick right?

I am so lucky though to be surrounded by so much love, and it’s all to say, thank you for loving me in all my shapes and sizes.