Battle Hymns of a Hot Mess Mom

I spent just about the entirety of yesterday asleep. I did absolutely nothing but sleep, chemo, sleep, eat and sleep. I really wanted to be active yesterday but nope, sleep. So there was nothing to post as I was not conscience lol. Truly just feel like a total waste of a day, but I know I need rest.

I “made” banana bread with S. By made, I supervised from the couch. I watched and walked her through the steps and I peeled three bananas! Look out! Thankfully it’s a easy recipe and her extra “oops” of vanilla I’m sure made it that much better. It filled the house with incredible smells. I’m still lacking the ability to taste, so why ruin foods I like…I just drink the damn broth.

9:10 AM – I finished some home logistics. This is literally the highlight of my day. It’s not but what else do I look forward to? TV…not much on. I am however waiting for an audiobook to be available. Nicholas Sparks “Dreamland”. I’m ready to cry about something outside of cancer. Speaking of which, today is also blood draw day…I got to get my water on. I’m a hard stick as it is, dehydration would make it so much harder to get a needle in me.

When I was at the hospital the Nurses would applaud my restraint on my diet and how my glucose numbers were so good. HA! I was always very honest, I’m not restrained because I’m so disciplined. Don’t get it twisted…I’m a coward! I’m restrained cause I’m a big baby and legit afraid of needles. Zero discipline, just fear! Being a coward makes me drink lots of water!

My friend A texted me today and asked me “Camping trip a go???” unfortunately the doctor hasn’t signed off. But I responded, “No, but I’m going.” I feel like in just laying here in bed waiting to die. And we are all headed to the end, so why am I laying in bed then? What the fu*k? I don’t want this bullsh*t. I want to live. There will be days like yesterday here I slept just about the entire day but on good days I want to do, something. I want to walk, go to the park, go to the beach even go to the grocery store. I have to gain the stamina to drive, and before I can do that I need to be able to stand and walk more than 10 minutes before I’m out of energy. The grace I need to give myself are in the days when I just sleep and not be upset with it.

The reality is I am going to live with this forever, the new normal is going to change per stage. In the first stage, it was Kevin and I hanging on for dear life, learning the meal system (avocado, hard boiled eggs and oatmeal at every meal was very difficult to get correct), learning the timing of meds, figuring out the signs of when my stats would dip. The second stage, being home and doing chemo, figuring out the kids schedules, figuring out how to get up and down the stairs (mostly trying to complete everything I need upstairs and bring down everything I need downstairs), what to eat during the day that I can do for myself, (overnight oats and chia seed have been a blessing) how to shower and protect the picc line, how to put pants on by myself. I’m still learning this new normal. It was bumpy for a while in the first stage. By the time I was getting ready to leave the hospital – Kevin and I were getting into a pattern. The third stage will be the time until transplants, then the transplant then after transplant and then life afterwards and scan-a-versary. This is my forever, but I need to learn how to live between each stage.

It’s kind of like the newborn stage, I struggled L. I couldn’t figure any of it out in the first few weeks. I didn’t know what he wanted, what I wanted…any of it. By the time I hit the grove with him, we were in the crawling stage. So on and so forth – every stage is a new normal. You just stumble around in it and eventually you get your grove.

As awful as this is, things happen for a reason. I just don’t know the reason, right now. The most obvious is that had I not gone to see the dentist and has this “infection” I would have never known I had cancer. I know the reason now was to bring the cancer to light as I had no symptoms. When I sit here now and look at all. “Had I not…” I see the “I would have never.” I see the reasons now. I suspect one of my reasons will be to be present. “Had I not had cancer, I would have never been present.” I may not have reflected in time or ever at all. No one know when the clock is going to run out and I know I can’t wait until the cancer to go away before I live my life. Cancer will be with me until the clock runs out, so I want to live, and live right now.

I rode the stationary bike today for 10 minutes, 1.8 miles on level 1. While I was tired afterwards, I’m grateful it was a good day. I’m really hoping that Saturday will be a good day also. My parents will take the kids to breakfast while I’m at chemo and if I’m still feeling like a hero tomorrow maybe J and I can go out for a walk in the park!

Had the port discussion today since they took my picc line out and I’m now just getting stabbed every time which sucks. The port was explained to me as “way better” than the picc since it’s under my skin and very well protected from infections and could be there for way longer than the picc. Show and tell time!

It’s an outpatient procedure where I would be lightly sedated and an incision would be made and this little device would be inserted right under my skin. My hands are numb thinking about this. Barf. I get the hee-bees just thinking about the process. I will need something like this (port or picc) when I get a transplant, but getting stabbed while waiting just…it sucks. We’ll discuss further during our next appointment. Until then…needles it is.