Wednesday, November 16, 2016

Limbo, Lower Now


Lately I’ve been feeling a bit like I’m in limbo. It’s not a bad place to be, considering the alternative, but it has its own frustrations, nonetheless. My liver enzyme numbers continued to climb after my last treatment (on Halloween) and I was unable to get treatment on Monday because they were over her threshold for treatment. However, they are not high enough to warrant steroids. This means we are watching and waiting for them to either fall on their own or climb high enough to use steroids. And here I sit, getting poked every few days and hoping things improve with nothing I can do to help except avoid liver toxins. No more treatment, but no anti-treatment (steroids). Limbo. 

The following is quite lengthy and detailed, describing my last few days, so feel free to skip to the end to see where things stand with me.

While we wait for my liver enzymes to stabilize, my oncologist’s team set up two appointments with other specialties at MDACC. One was with endocrinology due to concerns about possible pituitary inflammation or damage, and the other was with radiation oncology. The consults, labs, imaging and simulation were spaced out over two days making it necessary to travel to Houston late Sunday and return, at best, very late Tuesday night.

Monday was long and uneventful. My labs were at 7:30AM and my MRI was not finished until 9:00PM. The visit was typical of MDACC. Vitals first, then another nurse checks in about my medications (ad nauseam), pain level (again), whether I’ve been outside the US in the last 30 days, reason for my visit, and an assurance that the doctor’s assistant (resident or NP) will be in soon to talk to me. More waiting. Resident or NP comes in and asks many other questions, trying to understand my history and why I am here. We discuss things at length and rehash many details, ask several questions. Then they leave for a length of time and relay all of this to the doctor who will eventually come in and ask us more questions. Then they request MORE labs, even though I’ve already been stuck once that day. Imaging is confirmed for later that evening and then I got “someone will contact you.” This is a very typical visit at MDACC. A call from a nurse the next day reveals that my pituitary gland is fine, no further action needed. While this is a good thing, it also means that my other side effects and symptoms are not easily treated since they are not related to endocrine problems- which is fine.

Tuesday started well- I had learned that my liver enzymes from the labs the day before showed improvement from my labs at home, still too high to treat but possibly indicating there was less inflammation in my liver. I went back early on Tuesday to repeat the labs to see if it was a fluke or if they were continuing to improve. My consult with radiation was not until the afternoon so we caught a movie (Arrival – pretty darn good, better than the short story, in fact).  Once we returned to MDACC, the day started going downhill pretty quickly. We arrived very early to the appointment because we had run out of things to do. We checked in and sat near the desk. The appointment time comes and goes and my name isn’t called. I then get a call on my phone and hear the echo of the front desk person on the other end of the line. Apparently I had not been told to check in at the OTHER window and wait in that secondary area. OK. The appointment dance begins. Vitals. Nurse. Questions. Waiting. Resident. We discussed the procedure involved in simulation and what the schedule might look like and the future of cancer treatment involving combined radiation and immunotherapy. More waiting.

When the doctor finally came in she introduced herself and then told me, frankly, that she didn’t understand why I was there. She continued with a lengthy explanation as to why it didn’t make sense, pointing out that melanoma doesn’t respond to radiation and that she specialized in gynecological cancers and not melanoma. I had to nearly interrupt her to explain that recent studies show promise with the combination of radiation and immunotherapy (which was discussed with the resident just moments before) and that the goal was to shrink the tumor enough to remove it. Why her? Because gynecological oncology specialists are far more familiar with the complicated female pelvis, which is where my cancer began and my current tumor now sits. She explained that she didn’t typically work with melanoma surgeons and that my case would involve a good deal of interdisciplinary work and that she needed to speak with my oncologist first. She looked very uncomfortable. I told her that the planned surgeon was, in fact, a gynecological surgeon and gave her name. Though she allowed that this would be workable since she sees her regularly, she insisted that this surgeon likely wouldn’t be interested in my case and that she needed to speak with my oncologist about this before she would continue the consult. She had already tried to reach her (immediately before she came into the room with me). I insisted that we came all the way from Tennessee and needed to return home shortly. She offered to discuss my case at the upcoming interdisciplinary panel and would attempt to reach the supposed surgeon…  after seeing her other patients for the day. She declined to move forward with a simulation and told me that I could go ahead and go to the airport and go home. I was unable to reach my oncologist as well because she was not in clinic that day.


This is the kind of frustrating wall I have come up against on several occasions having (1) a rare cancer and (2) a brilliant and passionate oncologist who, unfortunately, can’t be bothered to communicate with anyone.

Mucosal melanomas arise from various surfaces in the body (female urogenital tract, head and neck, anorectal, etc.) and as such require collaboration between those who specialize in the areas where the tumors are located and those who understand melanoma. Where do we, as MM patients, fit in? Many cancers have one provider who eats, sleeps and breathes their type of cancer. Not MM. Some of us have a primary oncologist specializing in the location of the primary tumor and others have melanoma specialists.  Many of these specialties have had little reason to collaborate with one another in the past and I’ve personally been disappointed to find that, at least at MDACC they are rather comfortable in their silos and very uncertain, even confused, about stepping outside that comfort zone for the best interest of the patient. This is surprising, given that this is one of the largest and best cancer centers in the world.

Once again, I am reminded why MDACC was a challenge in the first place. Treating MM, particularly in a remote city from where we live, as many of us are required to do, can be very frustrating, very time consuming, and highly resource consuming; And, frankly, the current lack of consensus and poor communication between providers is dangerous to patients with such aggressive and difficult to treat cancer.

Once again, I’m asked to just wait. Wait for the specialists to finally communicate with one another and figure out what to do. Wait for them to respond to my messages and calls. Wait for my liver to improve. Wait for research to shed more light on what can help me. So here I remain, in limbo.

1 comment:

  1. JB, I am infuriated for you. You would think if they can name it then there should be a specialist able to help you. I am so sorry you are dealing with the waiting game again -- I think it is one of the most frustrating parts of the cancer world. No matter how stern you are, somehow they're still able to keep you in limbo. Sending you all the love and good vibes this week... and if we need to stalk someone to get things moving, I know a slew of women to get the job done. ❤️

    Nikki D.