sit with it

In my last update I was just getting discharged from the hospital to an apartment about 10 mins away. It’s too risky for me to be far from my transplant doctors this early in the process. When I got released I was really excited to finally be out and sleep in a real bed. I had so much gratitude and adrenaline pumping through my veins. AND Micah had to take off work to be my 24/7 caretaker so now not even work would separate me from my best friend!

I convinced myself I would do extremely well not doing anything and resting with my body. I wouldn’t make myself heal quickly or feel guilty for not using this “free” time to sharpen a skill or learn something new. I would simply just be….that’s how it started at least

But…

In my first two days home my optimism and adrenaline got the best of me. I was excited! I folded laundry, I cooked a couple meals (even though I couldn’t even stomach food), did some exercises on my Bosu ball…sure I didn’t feel great but I convinced myself I was taking it slow. By the time Monday rolled around I felt totally dead, everything set in hardcore, exhaustion, pain and nausea. I definitely couldn’t sleep through the night and got up every hour. I couldn’t feel comfortable in my body, the lack of energy finally sunk in and even taking a shower sounded too exhausting. I wasn’t going to feel “normal” or “comfortable” in my own body for a very long time. And progress was going to be very very slow. I couldn’t just “will” my way out of this one.

For the next week all I did was sleep. I would wake up, take pills, try to eat anything plain enough to offset nausea and swallow pills, move to the couch, sleep there, eventually move back to the table try eat noodles or broth, move back to couch, and then take more pills, move back to the bed to sleep. Do it all again the next day. After about a week of this with no improvement in energy or how I felt I became severely disinterested in ANYTHING. Not even trash TV or music, food didn’t even remotely interest me!

Here’s the deal…I’m on a severe quarantine protocol with no idea when I’ll be able to be off of it. Because I am so severely immunocompromised I still can’t have even have plants or flowers, all my meals must be cooked at home, I can not have any contact with any unvaccinated people. I quickly realized I didn’t have any exciting things to look forward to anytime soon. I just stopped having any interest or joy in anything…and then I started feeling guilty because from a health perspective my blood counts are recovering really well. I haven’t even needed any transfusions and my Doctors visits have been moved to once per week. That is INCREDIBLE progress for someone just a few weeks post transplant. I could not be in a better spot. Most people in my position on are high doses of pain medication or are back in hospital because they got an infection. But here I am feeling totally depressed, uninterested and just beat down. Normally I can snap out of this kind of mind set, but I just couldn’t. I just felt like even if I did get better I had nothing to enjoy or look forward to. It was some very dark doom and gloom.

I began to realize that you just can’t magically pull yourself out of depression. It got really hard the past few weeks…I was missing out on life happening all around me. I think this post transplant depression finally allowed me to grieve the life I would have right now if this fucking cancer wouldn’t have come back.

My brother gets married next week. I am beyond thrilled that he found the perfect woman to give his heart and life away to. I have been looking forward to this day my whole life. We have talked about it so much and I always told him his standards were a little too high for a woman and he might want to “loosen” them up if he wants to get married someday. BUT ALAS! He kept his standards high, found the woman of his dreams and then some! They are perfect for each other. I can’t be there for their wedding, that’s another really important thing that I’ll never get back that cancer stole from me. It makes me really sad.

I think I had to finally be realistic with myself about my circumstances and grieve a few things… life being normal, my body feeling like my own, having energy again. None of those things are coming back anytime soon. A lot of the things that filled my soul I can’t do anymore. I can’t cook for people, entertain, travel, run, garden, meet new people at parties or weddings, go to POPS for champagne go or out to eat. I had to be able to be sad about those things instead of convincing myself how happy and lucky I am to be alive. No amount of positivity or gratitude is going to magically make my life normal.

I went from being really happy I was alive to depressed that I was. After sitting with that reality for a while I was able to finally accept my restrictions and now I am actually slowly moving into a posture of gratitude for what I do have and what I can do— even if it’s a short list.

So that’s where I have been lately, learning to sit with how I really feel and then move forward! It’s made me more empathetic towards others that are telling me when they’re having a tough time mentally or emotionally. I used to think “You can get over it, just look at the positives!”. But sometimes you just can’t process hard things by thinking of something you’re thankful for or thinking about how your situation could be worse.

Through all of this Micah has been an incredible EVERYTHING to me. He has been able to be there for me in ways I never let him before. I have had all my motivation, talent, energy and spark stripped away from me. I used to plan ahead, move fast and have always been the optimistic one in our relationship. During this time Micah has been able to be a person to provide positivity in my life in ways I couldn’t anymore. He’s been the person to convince me to take a shower or get out of bed, reminds me how even if I don’t see it every day I am getting better. He gently reminds me of what we do have to look forward to and how special this time is that we get to spend all of it together even if it is taking naps and watching the FOOD NETWORK channel. He cooks, he cleans, he shops, he does my laundry, keeps track of all my prescriptions and pills, makes up bed time stories, gets me to go on walks and has the kindest responses for every ridiculous request I make. He goes from caretaker to entertainer, to best friend and romantic partner and for some reason still thanks me for giving him this opportunity to LOVE me in ways I have never let him before.

Trust me, when we said in sickness and in health we never thought we’d be here but, there is no one on this earth who I would rather face the dark thoughts and the days that I can’t find things to be thankful for on my own. He is my anchor and helps me see the progress even if it’s microscopic. Most importantly he makes me feel safe. I don’t think there is any shame in saying that there is NO WAY IN HELL I could get through this without him.

Currently, I am still stuck in Indy, I am feeling thankful, I have enough energy to do an old lady walk around the neighborhood almost every day.

I had a bone marrow biopsy last week and Makayla’s stem cells are fully grafted in my bone marrow which is great! Now my body has to get used to its new stem cells…I will have to watch closely for any signs or symptoms of Graft vs. Host disease which could pop up at anytime. But so far so good.

I am doing incredibly well for being 39 days old!