Day +103, Sunday

Photo of the Day: We started cleaning up today, but got distracted.

Today was long and tiring, but overall not a bad day. I think my tired-ness, if you may, stems mostly from not really pausing or stopping, but going from one thing to another. Multitasking in a way that I really haven’t done in over four months only added to the mix. I anticipate this will be both a challenge I face, and a balance I need to find & accept for myself.

Simply stated, I’m not the same person I was when I left home; its unrealistic to suddenly start at the exact point I left off, as though nothing happened. And I’m excited, and I want to feel like my pre-transplant self, have that same energy, etc, even though it’s totally not my reality. At some point today, while making space for 3 months’ worth of medications under the sink, I found my old brush and hair dryer – and I just stubbornly wanted my own hair, the long, blond, messy flyaway hair that looked as though I had just come from the beach, that half the time I tied back in a bun but it didn’t matter because it was my own and I loved it.

I braced my hands against the counter and leaned forward, swallowing an errant tear or two. Andy peeked from behind the shower curtain and was supportive, checking in with me and whispering a few words of support. I swallowed the rest of the tears down and kept going with my organizing. I get those emotions need to be dealt with – missing my hair, feeling upset at my fatigue – and I realize that as a person with a very recent Stem Cell Transplant, all of these things are normal and likely things that other transplant folks experienced as well.

I think it’s exacerbated because I just got home. In time, I will figure out myself and my balance, what is OK for my body and what isn’t. And because I want to get stronger, I know I’ll push the envelope – again, this process is like running a marathon…energy management is important, just as building endurance and recovery are too.

But I also need to tap into those emotions and recognize my needs. I need to check my ego and understand that sometimes I can’t walk up the stairs for the fifth time in 20 minutes. And I need to be better at asking for help; this is good practice for me, as I’ve been fearful for so much of my life of being a burden. I appreciated Andy for insisting that I sit down at one point – that was hard for me because I really wanted to clean up and clear out the downstairs with 4 months’ worth of luggage and acquired items, etc. So I guess another thing I’ll get to work on is being flexible and adapting to my body’s evolving needs. Finally, and this is likely the most important – I need to practice self-compassion and kindness; it’s OK to be tired and sad and annoyed and happy and grateful and frustrated all at the same time, as long as self-compassion is also part of the equation.

I have a feeling that this is a “To Be Continued” topic. And that’s OK.

A quick shot from my very very early morning, snowy walk. It was lovely.

My day technically started at midnight with a snowy walk. I just couldn’t help myself. The crunch of the freshly fallen snow under my shoes, the sound of the wind and swirling flakes on an otherwise silent night, the tree branches covered in white, were all amazing. I walked through the door just after 12:10 and delved into my nighttime routine shortly after. Unfortunately, the slight bit of moisture from the snow combined with wind and cold temps did a number on my sensitive facial skin. After gently washing and applying my rosacea medication, Metronidazole, waiting a few minutes and then applying my Eucerin face lotion – my skin just burned. It was uncomfortable for a bit. I tried to busy myself with important things like moisturizing my shoulders and brushing my teeth – but I was just uncomfortable. Thankfully, the discomfort went away, but its NOT something that I want a repeat of.

Thankfully I slept well and morning came fast, with WB waking us both early.

Wheezy-Bear

I took it as an excuse to drink creamy tea and get started. Which is exactly what I did. The decorations came down and over a long period of time, the downstairs was completely cleared and somewhat organized. I’ve still got some rearranging and unpacking in the upstairs – but that will just have to wait. Later, we hit up the newly opened Whole Foods and got items for my favorite Dairyless Baked Tomato and Shrimp Fettuccini and watched the Super Bowl. For the record, I cheered for Tampa Bay while Andy rooted for Kansas City. Mom seemed to cheer for both, insisting on a fair and well played game, which the two of us heartily agreed upon.

Because we had fun with balloons – and it doubled as a workout. That’s something I appreciate about Andy – his encouragement to (occasionally) goof off and have fun. I love laughing with him and he brings out my silly side.

And now, it is again late. Mom is reading and Andy has long since gone to bed. I’ve got scented candles in the study/lounge/TV room upstairs, and a very sleepy Monster in my lap. This has made typing awkward but, well, you know. Cats.

Still rooting for the Packers! The jersey is BJ Raji’s, who I became an immediate fan of after his interception & subsequent TD against the Bears during the 2010 NFC Championship Game.

Of course, I will include a video of that play.

Scratch that – I’ve tried, but the video is blocked from YouTube by the NFL. Sorry folks. Try this link instead: https://www.youtube.com/watch?v=4Uqm9Gnd_FM

I don’t know about you, but that’s awesome. I just like seeing an unlikely person defying expectations. And before I say more, I realize that I was cheering on Tampa during the Super Bowl, with Tom Brady and all. But the team hadn’t yet won, so I was rooting for them.

Moving on.

Tomorrow I’ve got a virtual appointment with my Asheville based primary care doc. As it’s later in the day, Mom and I will probably do some meal planning for the week and set up a plan to Crock Pot and make several freezer meals. Moving forward, I think this would be helpful – sometimes dinner stuff gets overwhelming for me and while I really enjoy cooking – my GI system is still working out its kinks. Pasta and cheese may work for me, but I also want to have healthier options and more variety on hand for both Andy and myself.

This is also going to be a “To Be Continued” thing. And that’s OK too.

Anyway – here’s Monster in a much more dignified position, before she became a monster in my lap. Cats.

  1. I’m sure it will take a while to find that balance you need. It makes sense that you want to dive in and take up life as you knew it, and yet you have been through a lot in these last four months. You are wise to realize you may need a slower pace for a bit as your body keeps adjusting.

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  2. Marit has always been absolutely independent – much sooner than she was able to say “do it myself”. And she did indeed do it herself. I never knew when pride of doing it myself changed to not wanting to be a burden. Very often not wanting to be a burden caused unwarranted stress, unhappiness and financial loss. At times I tried to help and was unsuccessful. Much of the time.
    Now is the time Marit needs to heal herself!! It will take much more effort and discipline to do this than run a marathon.

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  3. Balance is the ticket. Your decision to be active post-transplant and to do all the activities you are doing and have done is impressive. Not having the energy now that you had pre-transplant is understandable. It seems that, based on what you wrote, you know this. People want to be helpful and please let them and also don’t hesitate to request assistance when you feel you need it. Step by step you will have more stamina

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