The Princess relaxed, breathed deeply, and searched for strength. She had been on such a long, treacherous Quest through so much of the unknown. She had carried few things with her, hoping that less baggage would lighten her load. She knew from the beginning that everything she needed would be made available. Some way, some how, she would find all of her tools along the way. She had thought that she’d have many places to rest and ways to carry herself when she could no longer do it on her own. Many of her most cherished crutches had disappeared, withering away after so much time. She had hardened throughout her journeys, realizing that few crutches could stand to support her through the deepest of canyons and carry her to the tops of the next peaks. Few had been able to carry on along the curvy paths of darkness and light, stormy and bright. She had realized over time that the shouts and cheers of her supporters were not always heard. There were long times of silence, times of isolation. Through those times, the whispers and reminders from loved ones rang loudest in her ears. She may have been mostly alone, but others stood by her, even from afar, in acts of courage and solidarity. Those whispers were rare, but she cherished them. The Princess used much of her strength to shine her internal light, in hopes that a smoother path could be found. She had not yet found that path, but was still hopeful it was out there, somewhere, just waiting to be exposed.
This post has been weighing on me for a few weeks now. I got the results of my latest PET scan the same day I had the scan, which was a full month ago. The PET shows that my latest treatments have been unsuccessful. Cancer has grown. My doctors are quite literally just making stuff up for me now. They have no clue what to do for me, so they’re giving me options that have worked on others, but they “have no clue why” they work. The next drug that they are suggesting is called Nivolumab. It is approved for use in melanoma and perhaps lung cancer. It is nearing approval for use in Hodgkin’s patients that have relapsed after an autologus stem cell transplant. My transplant was not auto (from myself) it was allogeneic (from a donor- my sister). So far, it has never been used after an allogeneic transplant, but it will work in the same way, regardless. It will be boosting my immune system to encourage it to actively destroy cancerous cells. This is exactly what I have been hoping for all along, a drug that works with the body’s own healing mechanisms. My doctors are using this drug entirely off-label. As such, it will not be covered by insurance. Each dose costs $60,000. Yes. Every. Single. Dose. Yayyyyy! Thankfully, because I am Patient #1, and the drug company is curious to see what happens, they are willing to cover the cost of the drug. I will still have to pay the cost of the administering of the drug, nurse, fluids, etc. Yayyyyy! No clue what I’m looking at for out-of-pocket expenses yet, or how many treatments I will need. I am Patient #1.
My transplant does complicate things, however. There have not been complications in the studies that have been performed on this drug with other stem cell transplant patients, because their transplants have all been autologus. By boosting my immune system, it is expected that my immune system (which is really my sister’s immune system in my body) will attack other parts of my body, not just cancerous cells. This is known as Graft Versus Host Disease (GVHD). I have experienced mild forms of GVHD over the past year, and I do know what to look out for. My GVHD symptoms so far have been external (on my skin, and possibly my eye), but it can happen anywhere in the body. Some areas are very difficult to notice GVHD activity until it is causing very serious problems. Any GVHD issue will be treated with steroids, and should not pose any serious risk, as long as I am paying close attention to my body and it’s messages. I am not concerned about the risk of GVHD. In fact, I HOPE for signs of GVHD every single day. It means that my immune system is doing something. As long as it is able to be managed, GVHD won’t be a huge issue for me.
I hope that this new drug will compliment the things that I have been doing on my own, primarily eating well and using essential oils that are known to be highly active against cancer, tumors, cellular mutations, and cellular dysfunction. I’ve also been using essential oils that are known to support healthy kidney and liver function, as well as immunity. I really attribute my healthfulness to the use of these oils. I have been exposed to and contracted illnesses that should have or could have wiped me out (or killed me) and I have been pretty unaffected by them. I’m going to keep doing what I am doing in the natural medicine world, which has been highly beneficial for me all along. Keep swimming, right? I feel well. I have enough energy to do my typical daily things, including playing with a 5-year-old. I think I feel far better than any doctor would expect given my health history and current reading of my PET scan! And… I continue on my Quest for my Healthy Forever After.