It’s Day + 5!! 2nd day on Neutropen shots, so not much longer before we start seeing TLTC start to go up. Dr. Burt said anywhere from Day +8 to Day + 12. So I AM READY. I CAN BE HOME SOON. I am just visualizing sitting in my driveway watching the kids play. I don’t care if I have to wear a mask and gloves. YEAH. Needed a bag of platelets today. That was no big deal at all and I enjoyed the benedryl sleep I got from it.
Before I start my saga…. I have to say that today, the best thing happened. My dear friend (and coworker) C took Rosie to our company picnic. I facetimed her when she got home and it was pure joy on her face. Pure joy on her unicorn painted face. I wish I grabbed s picture. She had the best time with C’s kids and even planned a little part-tay playdate for tomorrow. That alone made my past 24 hours deal-able.
Where do I begin. Well. When I left you last, I was here
This got progressively worse until it hit it’s worse at about 10:00 PM. Then, like an angel sent from heaven above, I get a text from a dear friend (and Leukemia nurse) M. We start talking about it and she
forced told me to ping my nurse and have her call the doctor for some Malox. I finally agreed thinking I either need to have my gastro track removed or call the doctor. The nurse comes in and said, she would authorize the Malox. Praise God! Now I have never had Malox before, but I am now going to see if I can petition the great state of Texas to allow me to marry it. Honestly. This is the picture I text to M. at 11:00 at night. (I am truely horrified that I am posting it, but I no longer have pride of apperance. Lol).
I will not allow anyone to throw that cup away. It is my beacon of hope for the rest of my journey. Which is sadly true. Lol
Within 15 minutes, my pain reduced 80%. This was just unreal for me. I quickly layed down and got about 2 hours of sleep until it was vitals time. After vitals, I got another 3 hours so I was feeling pretty good with my 5-6 hour night and only slightly fiery GI track.
This morning, I wake up and anxiously await Dr. Burt. I mean, I had 3 hours to obsess so I wrote a list (which in my mind was board of directors presentable case) of why probiotics was not helping this woman and I needed Previcid or Nexium ASAP. I was ready, I ate some food that Amy and I researched was low acid producing. Rice crispies, banana, yogurt. I went to only water today. I sat on that bed and waited for him. I will woo my way into a previcid. Well, my day nurse came in, took one look at me and said. You need new meds. By the time he came to see me, the plan was already in play. They switched me to an IV probiotic, Malox every 4 hours and a different pink drink 4x a day. I was fine with that plan now that a golf all sat in my GI and not 100 dancing monsters, but I was left feeling empty that I didn’t get to plead my case so I told it to him anyway. He was like. Um, ok… You can have Nexium if you want, try this first. Apparently, it is the only GI medicine approved for use by the hospital pharm boardand Nexium brought in would require additional approval. He didn’t mind getting it, but thought the IV would be good for me. Whatever… Golf ball? Then, he asked the best question ( it really should be the title of today’s blog, but I don’t want to take away from the horror of yesterday, so I didn’t). He said, “Is this the room with the orange balls?” For a moment, I didn’t know what he meant. Then I realized he meant my snack cheese balls. Ladies and gentlemen, I am now going to be remembered by Dr Burt for my love of cheeseballs. My life goal is fulfilled. Seriously. I mean I am unbelievably obsessed with HEB (TX grocer) brand Xtreme cheeseballs. So much so that I didn’t even touch the ones we had. No other brand will do. He wanted to know what I used them for. I use them when getting steroids. The steroids leave me with an unbelievable since of metallic taste in my mouth and if I eat the “orange balls”, it covers it up. Best question ever! He also said he thought the steroids were making me manic. Um YES, YES THEY ARE!! Lol
After he left, I got my platelets and another 4 hours of sleep. Priceless. I woke up to my parents and Amy coming to the room with lunch for me…. And I wanted it! I had a baked potato, green beans, soy chicken and noodles cooked in veggie broth. All low-acid and GERD approved. Very good and I over indulged, but the effect wasn’t horrific. My regime was doing its thing. Then, Amy and I walked a mile in the halls and WAIT FOR IT!!!!! I rode the bike for 1/4 mile. Watch out fellow HSCTer Michael. You may have to wait all of 30 seconds for me on that machine next time you are in there. Lol. Took a shower and here I am. All and all a good day.
PS- Amy’s last night 😓😓😓😓