I Poop Rainbows

It has been a roller coaster of ailments and okay-ness the last two days. Wheeeee! Monday I met with Dr. Dunbar and the plan is currently to attack the LM with one more dose of Depocyte before doing a MRI. She feels like we should wait as long as we can so that we can “celebrate!” Her words. That is hope-giving for certain. She also gave me tips, meds and wisdom for the at that pint, four days of intestinal stopping, which didn’t do anything. I began having more and more pain, the steroids I was on was hindering all sleep at this point and Monday night I found myself at 5:00AM hysterically laughing so loud I thought I may wake kids, over something that came into my mind. All I could think was there was so much poo, that it was making it’s own organ between my spleen and liver. I was falling off the bed, with a belly rolling laugh I could not control. And then it just continued. There was no pause and poor Skip now had two nights of crap sleep because of me. Wahoo! The night before around 5 also, I took a Xanax and Tylenol, threw ear plugs in and woke back up at 10AM. Missed the girls going back on their “first day” but my awesome husband remained awesome and made it all happen. I did however get to see them off yesterday with my fabulous 1.5 hours of sleep and then I popped into the car for a visit with my PCP. I had laid with a heating pad on my stomach, I was in pain, and over this in a BIG way. More drugs, 2 Fleets later, and we had some reaction. I’m still bloated, but to everyones knowledge, there doesn’t seem to be an blockages. Thank God. I was feeling a lot like I did at the original diagnosis. Yesterday happened to be my diagnosiversary also. I was diagnosed 9/9/15 with stage 4, and 10/9 with LM. Big day and all I wanted was a pile of poo! Lol. It was definitely worth celebrating and pretty cool to look back and see how much we’ve done in just 5 little months. It feels like FOREVER!

I treated myself with a massage, direct orders by my neurooncologist, but I think it actually hurt me more than helped. I was SUPER relaxed, no sleep, coming off steroids, my body was pissed. It felt amazing and I was almost too relaxed when over and today, I’m hurting and totally "off". Last night I got an Ambien from the doctor and let me tell you, I PASSED out. I slept 7 hours, then like 3 more and this morning, I could barely get up to go to my next appointment. Which normally I would've been all over sleeping forever, but I hurt and nothing seems quite right STILL. Around 5 AM (I see a theme!) my head felt like it was going through a meat grinder. It hurt from the base to the port, and I felt like crap. Down to grab whatever I could and back to bed. Thankfully, I went back to sleep fairly quickly. I’m still a bit off today and have talked to the doctor, but she didn’t see a cause for concern at the moment.

I did however have a BIG appointment today, Genetics. It came back that I absolutely do NOT have Cowdens Syndrome like previously thought for so many years. I DO however have BRCA2 AND, yes AND, ATM Gene mutation. Apparently its super rare to have 2 mutations… haha. Made me laugh. The biggest reason in doing this was to make our kids aware of what they are at risk of. Fifty percent chance of having these mutations as well, but wouldn’t be tested until adulthood (18 and older) Early testing and screening becomes available regardless because of this now as well, which is great. There are already things I’m reading about PARP inhbitors and other possibilities that are available because of what we now now. I’m still a little in shock – I really don’t want my kids to have to experience anything I have and hopefully by the time they have to care, there is a cure.