Things have been rather up and down since my last post here, but first I need to note something.
I haven’t updated because I’ve been very nauseated lately, and screen time on an iPad, phone or computer just makes it worse. This means that updating has obviously been very challenging, so I’m sorry that a lot has happened since my last post here.
Now that that’s out of the way…
Our story, as we last left it, had me getting a “pretty bad” PET scan result, BUT also showing that I was a candidate for the BRAF pills. I’m going to do my best to piece together what happened next, but as you will see, there were many events that greatly affected my memory.
On Sunday, December 7th, very shortly after writing that last post on Saturday, I was getting ready for bed. My parents had just moved into their new apartment that day and things were going swimmingly. It was about 11:15 at night, when all of a sudden I was hit with a wave of pain so intense it literally knocked me to my knees. My panicked brain tried to think about what could be happening. Did I miss my dose of morphine? What was going on? All I knew was I needed to get my rescue med, oxycodone, FAST. I stumbled around, breathing heavily, and got them. I just wanted to get ahead of this pain. By this time, Peter heard me and rushed out. I felt like if I could just let the oxycodone work, I would be better, but simply trying to lie down on my bed was the most painful thing I’d ever done.
Peter called my parents (just as we’d imagined we would, just not less than 48 hours after they moved in!). Our “plan” worked exactly as we had hoped. Their apartment is so close to us that they were at our house faster than I thought possible; my dad stayed with sleeping Emmie while my mom came with us to the ER. I was in such intense pain that Peter had to carry me out to the car (thankfully all this weight loss made that a little easier for him!) and I couldn’t even buckle my seat belt. (For those that truly know me, this shows how intense the pain was. If I am even just moving my car in a parking lot, I will buckle up. I am ALWAYS buckled). But here we were, speeding down the dark streets, and I was just braced in the car against the pain as best I could. I told Peter just to DRIVE. It was far worse than labor. Not for the first time (nor the last), I was so grateful to live so close to our hospital.
We got me into the wheelchair and they were able to get me right into the ER, thankfully. I don’t remember too much else, other than we were in the ER all night and were eventually discharged with some pain pills at 6 AM. Even at that point, the pain was barely under control with both IV meds and oral pain meds. Yes, I had gone from a 10 on the pain scale to probably a 7 or 8, so it was better, but…
Fast forward a few hours. Mom, Peter and I had all napped (since we had gotten no sleep in the ER), and by 9:30 AM or so, the pain was roaring back, to the surprise of no one. We called Kaiser and they set up a direct admission into the hospital, so we could get my pain under control. It was a little weird knowing my hospital room number before I even left the house, but it was fine.
That car ride to the hospital was infinitely better, although I was still in a good deal of pain. I don’t remember too much else, other than just getting situated and hoping that I might be there overnight, at most.
Unfortunately, it turned out that was not to be. At some point (probably before we left the ER the firs time, honestly), we learned that one of the masses on my right kidney was bleeding, and that was what had caused that awful, instant pain. So they were not going to let me go home until a couple things had happened: 1) They were positive the bleeding had stopped (as determined by blood tests); and 2) My pain was fully under control with oral pain meds ONLY. It ended up taking several days for those things to happen, and I didn’t end up getting discharged until about a week after I was admitted.
During that time, I was sicker, more tired and generally not very good company, so I didn’t have many visitors at all. However, I did have a visit from Mother Kae, who is an amazing priest from a friend’s ecumenical Catholic church (so cool!). She brought me the host so I could still partake in the Eucharist, but she also brought along the most incredible gift as well. She had a prayer shawl that was made for her by the members of her church when she had surgery. She said she was better now and now longer needed it, and was giving it to me. You guys. Not only is it the softest, most divine shawl you could ever imagine, but it is so deeply imbued with prayers and good wishes that it just radiates off of it.
I was eventually discharged home the next Sunday, so after a very unexpected week in the hospital (I had thought I might be back at work in a few days, ha!). The biggest thing to come out of that week was developing a relationship with Palliative Care. To anyone with experience with cancer, this can be a scary phrase. To me, it basically meant “There is nothing more we can do for you.” Thankfully, that is not the case at all. It’s a team of professionals (MDs, pharmacist, social workers, nurses, etc.).
I will write more about palliative care, and about the time my appointment for a simple blood draw quickly devolved into an emergency meeting with palliative care plus a trip to the ER, but that will be next time, so stay tuned!