A New Journey

As I write this, I am still in shock, still unsure of what the next step fully looks like. I had a bone marrow biopsy on January 8. This was number 12. Since I have had so many, I know what to look for, what numbers I need to see in order to breathe a sigh of relief. I know when results are good and when I need to be concerned. I have learned a good bit since that first biopsy in 2024. So I wasn’t surprised when my oncologist messaged me to say that he felt we needed to look at another clinical trial as my next plan of treatment. What surprised me was what was said at the follow-up appointment to discuss the results.

Don’t get me wrong…I know an oncologist’s job is not an easy one. Cancer is a terrible disease, and I cannot imagine the process an oncologist goes through when they realize there is nothing left to do. I cannot imagine having to tell someone the fight is over, that they don’t have any more options to try. I do not fault someone in their position for running out of reasonable options. However, the delivery of that kind of news is something they can control.

I am guessing an oncologist is taught to show no emotion when having to deliver the really hard news. I am guessing they are taught to not get attached to patients or their families. I am guessing they are taught to be reserved, to show limited empathy/sympathy for a patient’s condition. How could they take on all that negativity if they didn’t protect themselves in this way? It’s almost as if they have to be two people: the compassionate, sympathetic hero that fights for their patients and the robot that disengages when things are not going well, when they are out of options.

The last video call with my oncologist was the first time in this process that I felt abandoned. It was the first time in a really long time that I was truly angry. It was the first time I felt the presence of the robot side of oncology. Why? It wasn’t the fact that my oncologist said there is nothing else that Emory can do for me. It wasn’t even the fact that he would not be a part of the next steps of my journey. And it wasn’t the fact that there was not a plan to see him again until February. I was angry because of the way this was all delivered. It felt so cold, so distant, and was the first time I felt like I was on my own.

As a recap, my transplant was completed as a clinical trial. The initial trial included a manipulation of cells and that I would receive a drug called Mylotarg 60-90 days after my transplant. The trial fell through after I started participating. The Mylotarg was now approved by the FDA. I am not sure, but I am guessing that is why it was not immediately available to me after transplant. See, I did not receive the Mylotarg portion until 280 days after my transplant. At that point, my Minimal Residual Disease showed the leukemia was back. It was a trace amount, but it was there. In November, it was .36%. I was given the Mylotarg in December. This number increased to 16% in January.

My oncologist told me at my video appointment that there was nothing more Emory could do for me. After I have been in their care for this whole journey, they would not be with me on the next leg of it. I was told that there were not any clinical trial options open at Emory or Northside for a patient in my position. There were two possible trials at Emory, but they are both full. I guess part of me is angry that they cannot make room for me in either Emory trial…that they wouldn’t do something to keep me in their care.

I was told of a few options at the video appointment. (At the time of the appointment, the following things were options.) There was a possibility to participate in a trial at Northside, University of Tennessee, Vanderbilt University, or go to MD Anderson in TX. Of course, I was hesitant to have to go out to TX, as it is so far from where I live. One, or both, of my parents would certainly accompany me to TX. It was a lot to consider the logistics of it all. Who would go? How would it work with their jobs? If we couldn’t take the pets, who would care for them while we were gone? Don’t get me wrong…my family and I decided we would go wherever I had to if it meant a chance to live longer.

In reading the after summary notes from the video visit, I learned that my oncologist sensed my hesitancy of going to TX. I also read in those notes that there were no trials available at Northside or the University of Tennessee. I messaged him to let him know my family and I were prepared to go wherever we had to for my best chance. His response stated that his colleagues in Vanderbilt felt they had some trials that would benefit me. He felt I needed to go to Vanderbilt to see what they had to offer. If need be, he said there may be something at the University of Alabama in Birmingham. In addition, he sent me a link I needed to use to request a referral to MD Anderson. He said this referral would be needed to see if insurance would cover me going out there. However, he encouraged me to hold off on the referral until I was seen at Vanderbilt.

I am currently waiting to hear back from him on how the process works for me to be seen at Vanderbilt. He mentioned the team was working to get me referred there. However, I don’t know if there is anything to do on my end yet…an application, a different referral for insurance purposes, find housing, etc. Once I know these answers, I will do whatever I need to do to expedite getting to Vanderbilt. Hopefully there is not anything to do for insurance purposes, as clinical trials usually cover patient costs. But I don’t want any surprises this time around, if I can help it.

I asked about doing chemotherapy in the meantime. My oncologist does not want to do any treatment at this time. His reasons were that with some trials, you have to be off treatments for 2 weeks prior to participating. He didn’t want to hinder my being able to start a trial due to this. In addition, he said that treatments they had done (Mylotarg) had no impact on my cancer. The Mylotarg has not been approved by the FDA to be administered in more than one cycle. The drug apparently is too toxic to do this. Therefore, he also said I could not do another cycle of the Mylotarg at this time.

Now, my family and I are in a holding pattern, waiting to see what our next steps will be. I hope those steps come sooner rather than later. In the meantime, this cancer is just in me, growing, continuing to poison my whole body. I hate the not knowing…when will I go; where exactly will I be; where will we stay; will I be hospitalized for the trial? I will certainly be prepared with questions/concerns for my new treatment team. I have already started looking at available trials via a government website for clinical trials across the world. It’s hard to determine what ones would actually benefit me though.

One thing I have made abundantly clear to my family and my oncologist is that I am not done fighting as long as there is a chance out there for me to live. I got 6 months out of this transplant, and half of that time was littered with memory loss and illness. I wondered why I was given that time if I would be right back to square one. I had an epiphany that maybe it wasn’t about me. Maybe God needed for someone else to witness this journey, my fight. Maybe someone else was to learn something from me and my journey. But that doesn’t mean I am done fighting yet.

It’s about time for dinner, so I suppose I will sign off for now. I am trying to make it a goal to update this blog more often. Until next time, I will be dancing with Luke!