I think that sometime I act as the model patient… I think that more often… I’m not. Now the funny thing is that I fool myself into thinking all is well and my mis steps are in no way intentional. If my doctor said don’t eat lettuce, I would never eat lettuce again (notice I didn’t use chocolate as an example). It’s slow and unintentional. Slowly, I push the limits until the next thing I know I’m sitting at the opening movie of Pixar’s Inside Out. Well, I have now had 2 pretty significant illnesses in 1 month and I have finally woken up. I’m still have a baby immune system, I’m still in a VERY life threatening position and I am still recovering from the side effects of a very strong chemo regime…. I finally realize the severity of my situation and have gone back to my April/May precautions. I get this, I know it and I’m coming clean to everyone. Now for my last 3 weeks.
Amy and the boys came for a wonderful week in the beginning of June. I miss my boys so much! It was hard to stay home while everyone went to all the amusement parks, but I am in no way physically strong enough to go and then there is the fact that they are a factory for every germ on the planet.
We did get to go to dinner a few times and the week flew by. The weekend they were here, we had Rosie’s birthday party at a local art studio. She wanted a Paris theme. It was nice, quick and stressless. I kept it very, very small.
Before we blinked the week was up and it was time for them to leave. That same day, my BFF and her daughter flew in. This is where it all went downhill. Wait, that doesn’t sound good. Jen was here and we had an amazing time. Seriously, it was amazing. I cried my eyes out when she left. I meant my strict HSCT regime went down hill. Repeat. Jen in no way is associated with the downfall. Love you Jen 😍❤️😘❤️😘❤️😘❤️😀
Lol. It was just that we were so busy. My parents left for an Alaskan Cruise 2 days after Jen got here and we signed the girls up for all day camp the following week. Plus, we had 2 girls under the age of 8. Through all the craziness, I loosened my grip on post HSCT protocol. Maybe I didn’t sanitize religiously, I picked up dog poop once or twice, I went into a store that was probably a bit too crowded for me. Maybe, I took her to the Alamo but stayed outside. People, these guidelines/rules are there for a reason! FOLLOW THEM AND DON’T LOSE SIGHT. I did and last Friday, I started to experience some of the worst pain in my life.
You see, all week I had the MS hug (grip of death / feels like you just bruised every rib in the front and back of your body) and had pain with some difficulty breathing. I wasn’t concerned. I know the HSCT was to stop the progression of the disease and if my body was in distress, I would experience old symptoms. I attributed that to my high hormone rates, thank you chemically induced menopause. I’m sure much of it is. But, last Friday, it hit a new limit. It was honestly the worst pain I have ever felt. So bad, that when I finally took enough pills to dull the pain even if slightly, I was so exhausted that I fell asleep… This lasted until 6:30 PM Saturday when I woke up, ate and fell back asleep 4 hours later. Sunday we stayed home and the nausea that snuck up on me, the 4 hours I was actually awake on Saturday, was back with vengeance. Nothing really stopped it. Not bread, not crackers, ginger ale… Not even zofran (at least I tried food before jumping to the nausea pills). That night…. I realized that my pain and nausea wasn’t totally from hormones. Unfortunately….it was from a stomach virus I caught. The next day, I lay in agony when Rosie came into my room to talk to me. Somehow, while talking to her, I felt my stomach and noticed a nickel sized lump on the side of it. I did one of these things:
1. Quietly used logic to realize it was probably a swollen lymph node
2. Call my doctor to make an appointment
3. Scream like a baby for my mother as I kept my hand on the lump.
Bingo, #3! My mother called my PCP and in 1 hour we were on our way. Well, it ends up it was a virus. I was running a slight fever and the lump was one of many on my stomach, arms and legs… Scar tissue from the countless MS injections I have had in the past 2 years (That never crossed my mind). I received some instructions, a refill of zofran and we were on our way. It’s Friday and I fell 100% better and most importantly…. I learned my lesson. A fever of 101.5 and/or dehydration means hospital stay for me and that was enough to scare be back into my new reality.
Well, it’s 11:30 and I need to try and sleep. I can’t thank all my friends who have flown down to stay with me Mary, Emily, Kevin, Yvette,Gary, Amy, Connor, Ryan, Jen and Izzy (or have scheduled to come down.. Mary and Emily again…Cristine, Tara and Theresa). I am still in awe of the love and support everyone shows us.