NOTE: I had started writing this Tuesday morning, thinking that I could sum up what we thought was the end of emergency room visits for a while. We were wrong 😛 Blame my exhaustion for sending you back in time.
So our story starts on Tuesday morning…
My poor girl is curled up on the couch right now under a huge pile of blankets, one of them being electric. Every morning since her first dose of immunotherapy last Friday, we’ve been having a hard time sleeping (her more than me). She’ll wake up around 7 or 8 after a late night shift, achey and uncomfortable. I’ll usually wake up to an empty bed and find her on the couch utterly exhausted. This morning, we both woke up before it was light out. Cuddling rarely happens when we are sleeping because I’m too much of a heater, but this morning I found her shaking with teeth chattering on her side of the bed. The only thing I could do was curl up around her to help regulate her body heat. Feeling helpless is an understatement.
Friday, Megan had her first immunotherapy treatment. It was simple and lacked excitement. Sitting in a chair for about an hour staring out a large window trying to find ways to stay entertained. It went well and we both walked out of there feeling great. We decided to get dinner and walk to a place a few blocks away.
That was when everything started going downhill.
Her stomach started hurting, she ordered food but didn’t touch it, and didn’t have the energy and hurt enough to not be able to walk back to the car. As you know, Megan is all about her steps so for her to not walk means that something is really wrong. After picking her up, we headed back home in LA’s glorious rush hour traffic. During the full 1.25hrs of driving time, she was writhing in pain. Her back and stomach felt tight and she couldn’t pin point what hurt. 30 minutes after being home, we headed straight to the emergency room… For the second time in a month. Because it was pain related she was seen quickly, given an IV, a pain med (that worked quickly) and an ultrasound. Within the hour she was pain free and the doctors had no idea what could have caused it. Dr. Finn says that her tumors can cause pain, so that might be the gist. The oncologist on call says that it most likely wasn’t the immunotherapy.
As the weekend continued, Megan started feeling the effects. The first 3-5 hours of each morning, she battled fevers and hot flashes. During the day she goes through waves of feeling achey and has been losing her appetite for real food (toast, apple sauce and jello are her friends right now). Not to mention that on top of this, she’s having a hard time regulating her body temp.
So all of these things on top of each other are not only making her feel horrible, but are also creating a huge case of FOMO (Fear Of Missing Out). Even though we were at the emergency room on Friday night/Saturday morning, she rallied to go to a Gwen Stefani concert on Saturday night (because there was no way she was missing it). Sunday, side effects started ramping up so much that she had to cancel on an event she had been looking forward to: Dark Harbor at the Queen Mary (an event that I am way too chicken to go to, so she was going to have a night out with coworkers instead). This was when she found blog with an article called “The Spoon Theory“. The basic gist is that when you have a condition that takes a heavy mental and physical toll, you don’t have the ability to do everything all the time anymore and instead you have to pick and choose what you can handle. Megan’s never had to do that before. To never have that mindset before, it’s a big one to wrap your head around.
Fast forward to later that afternoon….
Megan has been battling a fever all day. It wasn’t until we took her temperature did we realize how bad it was (102.4). We called the doc and they wanted us to drive to the Santa Monica UCLA ER… in rush hour on the 405 at 3pm. Fantastic.
After an hour of driving and excruciatingly slow bumper to bumper traffic, we go to the ER where Dr. Finn’s office had already called ahead and forwarded over all of Megan’s info. Megan had to wear a mask and we were told to try to sit away from people in the waiting room for her protection, since her fever was so high. Compared to our past ER experiences, they were able to get Megan into a bed pretty quickly. The doctor and nurses were nice, they hooked her up to an IV and they took an insane amount of blood for cultures and tests (which ended up being moot because Megan had to endure another round of blood letting due to the fever skewing her first round of results).
At first they wanted to throw her on an antibiotic. It’s the first thing that you usually do in these situations because fever=infection. After running her tests (which all came back great) and doing a full CT scan (where they found nothing), they decided not to go through with it. To sum it up, Megan is is “technically” doing fine. This is probably just how her body is reacting to the immunotherapy and it just needs to be managed with a rotating schedule of ibuprofen and acetaminophen. After almost 8 hours, they discharged her and we were able to go home.
We set Megan up so that she was ready to go every time her alarm went off. Wheat thins (courtesy of the MHP crew, thanks guys!), gatorade (MANY thanks Mar Parr), a water bottle and her medication filled up the top of the nightstand. Every three hours, that iphone chime would occur and Megan did her thing. When we woke up at 11am, her fever had broke and she was happy to be functioning on a fullish night’s sleep. We are still both exhausted and not 100% yet, but we know we’ll get there eventually.
So with this discombobulated and unorganized post, I just want to say that you’re doing great babygirl. Hang in there and do what you gotta do <3 Love you forever.
Send Megan some love