I apologize for being MIA over the last few weeks. I kept reminding myself that I had to blog; there were people waiting for updates on my treatments. Unfortunately, much like bills, I put it off until it was absolutely necessary. Blogging, the last two weeks, seemed like a chore, especially since little in my world seems to be changing for the good.
Let me take you back to Easter Sunday. Prior to that, my pain had been controlled and we were waiting impatiently to meet with Dr. Ong and finally get, what we hoped would be, some good news. Unfortunately, the pain in my back, that day, became fairly intolerable. I had trouble finding a comfortable position when sitting at dinner with our families and used a heating pad just to get slightly comfortable. When Milo and I finally got home, I tried to get ready for bed only to burst into tears. The pain was easily the worst I had ever been in and I finally broke down and took half (yes only half) of an oxycodone. The next thing I remembered was waking up the following morning.
Fortunately, the pain normalized over the course of the week. I was back to dealing with it via ibuprofen and lidocaine patches. It was tolerable when I went to Dr. Ong’s for the follow up. My patience, however, was non-existent. We waited well over an hour to see Dr. Ong, only to meet with him for about ten minutes. He reiterated that he was not willing to do surgery right now, that no one would touch the multiple tumors on my lungs and that my only option was chemotherapy. Dr. Ong also mentioned that the panel originally thought I had been misdiagnosed until their GI specialist looked at my biopsy slides and agreed that I had cholangiocarcinoma. Apparently, a thirty-year-old female, in their minds, could not have this disease and they assumed it was a liver met from ovarian cancer. The GI specialist recommended we try two different chemo drugs, Avastin and Abraxane, which are both off label and very expensive. Where have I heard that before?
Three days later, we met with Dr. Brooks and decided not to do another round of irenotecan. We discussed the two new drugs, which he warned insurance might not cover –joy– and going forward with our plans to see the Mayo Clinic for suggestions and clinical trials. Our final conversation piece was about Dr. H and my fertility. I want an egg harvest; my biggest regret all these months has been that we didn’t have eggs to harvest. Lupron can’t be doing good things to my body and Milo and I have discussed having a surrogate have a baby for us despite still trying to fight cancer. I know the idea sounds crazy, but my bucket list used to have a top two on it that I removed when I posted it on this blog. Number one was get married. Done. Number two was have a family. I want children, have always wanted children, and Milo and I know that I can have six months or six years with this cancer. We don’t want to give up the children part of our marriage because I might die. If we had eggs, we could have babies.
Insert appointment with Dr. H this week, who is willing to harvest for the small sum for eight thousand dollars. Milo says we should do it anyway. Maybe we can do a payment plan and if we can get them to do a transfer right away, it’s only a thousand dollars more and we could have a baby in nine months. We have plenty of surrogates willing to help out, but I’m concerned about the money. I’m concerned about leaving my husband with a baby to care for when he is grieving. I’m just full of concerns and the overwhelming desire to be a mother. I don’t know what to do about that. (In the process of writing this blog I contacted Alice from Fertile Action who told me that she has a doctor in Vegas willing to do an egg harvest for free if I am willing to harvest just eggs and not embryos.)
Of course, this was all complicated by my pain this week. Last Sunday, I woke up in pretty bad pain after a night at my in-laws’ home where we were saying goodbye (they snowbird and are heading back to Michigan). By time we got home, I had already taken a half of oxycodone and then another full one while we were at dinner with friends. The pain was so bad that Milo even had to help me get off the toilet bowl because I couldn’t put weight on my right leg or else it felt like electricity running through my leg. It was terrible and only became worse over the following two days. I was taking my pain medication every four hours and being wheeled around in a wheel chair to get errands taken care of. I was miserable, still am but now at least I can get around with a walker.
Thankfully, when I saw Dr. Brooks last he ordered me a consult with a radiation oncologist, who we met yesterday. Dr. Mack is exceedingly funny and kind. We start radiation on my spine on Tuesday in hopes that the tumor there will go away and I will have my life back in some way. Of course, this brought a fresh round of worrying when it comes to doing hospital nursing and my manager, as always, is being kind, patient and helpful. Currently, I am off the schedule until the middle of the week and we will revisit my options on Tuesday as far as working is concerned. I want to work, but now more than ever I am afraid I am going to hurt myself trying to do what I’ve been doing. At some point I do have to worry about me.
So that’s it. I’m still here, still fighting and still trying to figure out what to do next.