Category: Emotional Journey

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.

Life has been a little crazy lately. I cannot believe that I’ll be headed back to Canada next week for a brief visit with family, but also to run a few errands (visas, passports, textbooks).

This will be my first flight after the lymphedema diagnosis. In some ways, I’m nervous about it. I’ve flown quite a few times after surgery without a problem, but I didn’t have lymphedema then. I do now. So now I have to take precautions. I need to wear sleeves (which thankfully, I now have several pairs of) whenever I fly. I wear sleeve on my left arm anytime I’m awake anyways. But for the purpose of flying, I also need to wear a sleeve on the right. I also need to be more careful about lifting bags.

Mentally, I’m doing well most of the time, but every now and thing, something tweeks. This time, it is a consistent pain in my left chest. The pain is in the same spot as my primary tumor, so it triggers those memories. I’ve brought it up to my doctors many different times. They all confirm that it is NOT cancer. I am doing OK. However, the pain continues. This time, the PA (my surgeons physician assistant) has referred me to the pain clinic – they are calling it “post surgical pain”. I can handle that. It has been almost a year since the major surgery, so the pain should have settles by now. So, I’m crossing my fingers hoping that the pain folks can get to the bottom of this issue.

When I’m tired, the pain triggers an emotional response. My mind then starts to catastrophize. I start thinking that I’m having a recurrence. That that cancer is back and in my bones or that I have a large lymph node that is cutting off the circulation in my arm. My mind starts down that path, and when I’m tired I don’t catch what is happening. When I’m not tired, I can usually see the thought path and intercept it. I can see that what my mind is doing and stop it, tell it that there is likely a non-cancer reason for the pain. I trust my doctors. It is in their best interest to keep me safe and healthy – it doesn’t make sense that they would ignore an important symptom – and so I must remember to trust them.

The biggest challenge with this episodes is the amount of time and energy it takes. I feel the need to be diligent, but that means making doctors appointments and seeing doctors. It means intentionally prioritizing exercise, and having that cut into the productive hours I have for work. It is difficult finding the post treatment balance.

And so, with a better night’s sleep – I’m doing OK. I’m dealing with various aches and pains in my body and not assuming that every one of them is cancer. I’m working really hard to move on. To get back to my academic work, and to do more teaching. I’m exploring opportunities as they present themselves.

At this time last year I was preparing for my first surgery. I wasn’t really scared anymore. I was ready – or at least that is what I remember of it all. I remember being scared early on, but not being scared on the day of. I remember giving myself permission to go into surgery kicking and screaming, and really only crying a little as they placed the third wire in – a rather painful process where the mammogram machine is used to squeeze your breast while they place wires into your breast to show the surgeons were the tumor are. You leave radiology with wires sticking out of you (like foot long wires protruding from your breast(s).

A year ago tomorrow, I had my first breast cancer surgery. I don’t mark that date as my cancer free date because they didn’t actually remove the last of my cancer that day. They only got the first two tumors – the third was a small one that was not properly marked, so the wire wasn’t in the right place. It didn’t matter much, as the plan had always been for a double mastectomy, which would be done December 17th. This surgery was to test my sentinel nodes, do a devascularization of the nipple and areola, and biopsy the cells under the nipple.

I remember waking up and my first question to my husband was “are my nodes clear?” – referring to whether or not they found cancer in my sentinel lymph nodes. Apparently I asked that question about 8 times as I was waking up from the surgery. Fortunately the nodes were clear, as were the cells under my nipples. This meant I was good to go for the nipple sparing double mastectomy with immediate DIEP flap reconstruction on December 17th (yup, that surgery is a mouth full to say, and was a long one to both do and to recover from).

And so today, I look back on that time. I think about what I would tell myself – with the benefit of hind sight. I’d tell myself (1) drink more water, (2) finish your coffee a littler earlier cause they will take it away from you, (3) don’t bother with the pre-procedure nerve block as it was likely more painful than the pain it was blocking, (4) let Scott have one last grope of the girls, and (5) you’ll be OK, when it is all said and done you can order room service from your hospital room!

 

In education, there is a theory that talks about “learned helplessness” (actually it is behaviorist psychology).

Learned helplessness occurs when an animal is repeatedly subjected to an aversive stimulus that it cannot escape. Eventually, the animal will stop trying to avoid the stimulus and behave as if it is utterly helpless to change the situation. Even when opportunities to escape are presented, this learned helplessness will prevent any action. ~ Kendra Cherry

Although this idea is presented as something that happens with animal behavior, it also happens in humans – and especially in patients. I find it in myself at times. I complain about an persistent ache or pain (interesting choice of words – complain rather than report – it is in part how I am made to feel when my aches and pains are dismissed). My doctors don’t know what to do about it, so they ignore it. Somehow, this translates in my mind to it being something that cannot be fixed – something that I need to just suffer through. After reporting the pain to many different doctors, I exhibit learned helplessness. I feel like there is nothing that can be done, so I stop trying. I stop reporting the the aches and pains. They don’t go away, I just stop telling the doctors about it – because I’ve learned that they cannot do anything about it. I’ve learned helplessness.