Yesterday, I got some disappointing news so I immediately tried to alienate people who care about me and would try to help. I pouted and wallowed in my self-pity and had internal tantrums until I quickly and finally became tired of myself.
The people temporarily humored my entreaties to be alone and then stepped back in once I asked them back, apologetic and sheepish. I knew what I was doing at the time, but I couldn’t stop myself. In some cases, I knew I couldn’t trust myself from the outset: I told my mom I loved her and I would talk to her today. I couldn’t talk yesterday. I honestly don’t know that I can talk to her right now.
Yesterday seemed initially kind of victorious. The PRRT appears to be working. However, the blood infection from the embolization necessitates IV antibiotics and the side effects negate any good the Lutathera has done, so it’s essentially as if nothing has happened. I’m on a pain pump that makes me exhausted and I feel sick to my stomach all the time. I’m dehydrated and pumped full of electrolytes and fluids and the hateful antibiotics that make my guts roil.
The doctors say that I have two types of bacteria in my blood. They are slowly clearing, but the protocol is two weeks of antibiotics. That’s two more weeks of misery. I thought and hoped they could cut it down from there and remained hopeful. Then the infectious disease doctor arrived at the end of the day: Two weeks is the minimum I would be on these antibiotics. Since treatment gives me probably only a few months of relief, that means that at least one-fourth of my time is being taken back by the antibiotics. This is sad and devastating to me. The embolization set me back, essentially, to square one.
The infectious disease doctor said he would think about what to do. I believe him. My medical team here also is thinking. Everyone is thinking. I’m mostly feeling sorry for myself. I’m so tired. I honestly don’t know if I have enough fight in me to make it through two more weeks of weakness just for a month of feeling OK. I’ve been struggling to hold on since late May—just a few more weeks for a scan, a few days for tests, weeks for insurance approval, a week for treatment. I felt good for one hour and then it was gone.
Two more weeks or a month for the equivalent on the other side to wait for this smug infection to settle sometimes seems pointless. At other times, it seems everything.
Right now I feel defeated. I’m tired from my pain medication. Food services couldn’t hear my order when I called, and eating is an exercise in futility anyway. It feels like the plan to slowly evaporate from my life is working.
Last night, however, when my boyfriend stopped in to see me, we came back to the topics of all the things we had yet to do. Tired of feeling sorry for myself, I found myself planning once more for little daytrips and concerts. I still want these things. I could still maybe have them in a month before I get sick yet again. When I think about the time I want to spend still with family and friends, slogging through a few more weeks of unending nausea and dehydration seem like I might be OK. I just talked to the team of doctors, and it looks like I have at least two weeks of antibiotics to clear up the infection.
When I’m not sad, I’m angry that my time of wellness is coming to an end and will sail on without me, awash in a sea of nausea, humiliation, fluid loss, weakness, pain. When the time comes and my VIPoma hormones soar again, I would like to just stop taking everything. I’ve thought about doing that sooner rather than later. I’m so tired.
But at other times, I’ll start booking things and planning things with en eye to knowing that I’ll probably end up right back here fairly soon and will continue to feel terrible. As for the pain, they’re going to send me home with pain medications for the times it feels like a shark is gnawing on my liver and for when the bones in my shoulder hurt.
What is a month? It’s four weeks I wouldn’t have had otherwise. Is it worth hanging on to this little bit? To these little tiny pieces of life? Even at my darkest times, I say yes.