I find myself often wondering, which one of my doctors is in charge? Which one is “the most responsible physician”?
In my case this all gets complicated. I see a lot of doctors and nurse practitioners, across two different systems (Stanford and Palo Alto Medical Foundation). My medical conditions have overlaps, so when one doctor orders something, I’m often having the results sent to other doctors.
My most recent test was a bone scan. This was done as a baseline measure before I start any additional hormone therapy. It was also done because one of the potential side effects of untreated celiac disease is osteoporosis. I figured it would be good to get a baseline measurement. So, when I mentioned my concern to my gastroenterologist (celiac specialist), she placed the order. However, since my oncologist is the one I work with on the hormone therapy plans, I asked them to send him a copy of my results.
Last Wednesday I was up at Stanford yet again to see my surgeon’s assistant. I’ve had persistent pain in my left shoulder almost constantly since my last surgery in March. I’ve complained about it frequently. Of course, this also leads to a bit of a freak out, as the pain is coincidently right where my largest tumor was – so whenever it flares up (like it did last week), I enter a spiral of self-doubt and worry/panic. Is it cancer? There is something wrong! Except, that there is nothing wrong and it looks nothing like cancer. This time, my surgeon’s assistant referred me to the pain management clinic (integrative medicine). There is a theory that acupuncture might help finally make the pain go away, which would reduce this stupid spiral. She also mentioned that she’d pass along the info to my oncologist and psychologist – just so that everyone was in the loop. Of course, this made me feel stupid. I felt a little embarrassed, that this was nothing yet again, and now my oncologist would know that I was in seeing my surgeon’s assistant for nothing. Logical me, knows that it isn’t nothing and that I needed to do it, but still, when it turns out to be nothing to worry about, it makes all the worry seem like a waste.
Later that day, I had to return to Stanford cancer center to pick up a couple of compression sleeves (damn lymphedema). As I was waiting for the nice lady to finish looking things up and find a few things, my oncologist spotted me and knocked on the door (it was locked as someone else was being fitted). He called me over with a comment about “saving him from having to call me” … of course, embarrassed me is in a panic state. Why is he calling me? Boy do I feel like an idiot. Unfortunately, it had nothing to do with my morning visit. My bone scan results came back. My numbers are a little on the low side (I have no idea what they are as the test results haven’t been released to me yet). His comment was “nothing urgent, we are planning for 30 years from now, not 30 days” … so, in order to ensure I don’t end up with osteoporosis issues 30 years from now, I’m to double up on my calcium and vitamin D supplements. All my blood tests indicated that I was fine on both accounts, but apparently, that isn’t translating into bone density. So I’ve doubled up for the time being and we’ll see what the future holds. There is some theory that as my body detoxes and heals from the gluten exposure, it will self-correct on things like malabsorption of calcium.
This brings me back to my question – which doctor is in charge? The doctor that ordered the test isn’t the one that told me the result. Neither doctor has released the report to me, so I don’t yet know what the official results of the bone scans were – I just know that they were low. I also don’t know which doctor will formulate a plan regarding this … probably yet one more doctor (an endocrinologist) as it is yet one more speciality.
Friday I saw another set of health providers for totally different reasons. I had a L-Dex scan. This was my first measurement, meant to be a baseline. Ideally, they want to start taking these measurements on women before they have surgery involving lymph nodes. It may provide a way to help predict which women are at risk for lymphedema. My first measurement doesn’t mean anything on its own. I will do another measurement in three months. It will be compared to the first to help determine if my lymphedema is improving with compression therapy.
I then went over to see the therapist that manages my anti-depressant medication. She was awesome. For the first time in a long time I felt like someone was looking at the whole me, and not just the part of me that is their subspecialty. She was concerned about my weight gain (upward trend since August, which might also be related to eating mostly gluten-free), but also my blood pressure. With those two items in mind, she recommended a change in my anti-depressant meds, as the one that I’m taking right now increases appetite (great when you are on AC chemo, not so great otherwise). Really, she has been the first person to actually do something about my weight concerns. I’ve raised the issue. My other doctors make comments like “lose weight” without giving me any tools to achieve that – or worse – they put me on medications that cause weight gain and then tell me to lose weight – it is really frustrating. So, I was happy to have a care provider actually look at the whole me, appreciate that I exercise a lot already, I eat healthy, and my meal choices are even more limited by the removal of gluten.
In some ways this post demonstrates yet another typical week in my post-cancer treatment life. I may not be fighting the cancer anymore, but I certainly am fighting the after-effects of cancer treatment. In some ways, I’m still in treatment. I don’t completely understand why hormone therapy isn’t considered treatment – probably just a pragmatic thing, you wouldn’t want to be told that treatment lasts 10-years. And for some women, hormone therapy has only a few minor annoyances – it certainly isn’t as bad as chemo. And so, I continue to reclaim aspects of my previous life, while juggling way more health related appointments than I’d like, and I try to get healthy both physically and mentally. This week, I’m a little stronger.