When I found I couldn’t peel an orange or a grapefruit anymore (I like my grapefruits eaten in sections like oranges) I started working on how to cut them into sections so they could be tackled with only one working hand. That was not so easy–it was pretty messy and wasted a lot of juice on the counter–and took a cleaver and an acceptance of some pretty weird-shaped slices. After a month or two of this I saw someone at our QIVC retreat peeling an orange so I asked if she could also peel me one. Which she did. And I ate it in sections instead of tearing pulpy pieces off slices of peel–and (heres why the blog post) it was so much more delicious and enjoyable! I had forgotten. I had settled for the self-sufficient DIY method that brought me noticeably less pleasure.

I assume no one out there in healthy-person-land, world of the well, wants to peel my orange for me.  But I think this is wrong in general.  People wish they could help, change things, make a difference–and this is one thing they can do for me, I guess.

Surprisingly I don’t think that often about the high chance that I’m going to probably die pretty soon from this cancer. I try to think about it, but it’s really hard to conceive of, even when given a life expectancy that is measured in months.  How to believe in that? Why believe in that?  I don’t really know how it will go and it is hard to believe, I guess, even for me.  But then I step back a little bit and catch myself stumping around the kitchen, say, after breakfast—trying to do my part to clear the table—and I walk like a penguin and I almost fall down and I am breathing hard don’t have any energy.  This is not a healthy person.

So I walk to the fridge and put something away, walk back to the table, and walk back to the fridge and I’m panting.  I don’t have any energy and have to rest, but then I don’t always rest because I’m stubborn so I end up wearing myself out like this many times a day.  This morning after breakfast I decided to come up to bed again and sit and read so I had to get all the things I needed to do that and then come upstairs, which is hard these days.  Then I remembered I would want the phone if it rang, and then I needed water, and then I needed to take a morphine, and once I did all that I was just staggering around like a drunken penguin because I just had no energy and could barely get myself to move around. So then I plopped into bed and waited a little bit before I could swing my legs in because I was so tired.

So I keep wearing myself out and I don’t notice all the time how far I am from being a healthy person.  Then some kind of reality check sinks in, like being offered a cut in the bathroom line at the movie because I have a stick to help me balance and I am obviously not healthy. Oh.  This is me they’re offering special treatment to?

On paper right now things look okay.  The chemo we started in December and early February are both working, it seems like from the CAT scans and MRIs, and so on paper my cancer is ‘responding to second-line therapy” blah blah blah but then in my real life right now it seems really hard. Maybe more for emotional and psychological reasons than physical, but the physical – particularly fatigue and trouble walking – is pretty tough right now.

(Part four of four musings on vanity’s role in my life.)  Finally we come to my final vanity: Vanity about smarts.

I have always considered myself a smart person.  Besides this, I have had to navigate in the medical world,  specifically the world of breast cancer, on and off since 1995.   Before my diagnosis of metastatic cancer in November 2013, I had been in graduate school for midwifery for a while – wondering if some courses, like pharmacology, were ever going to really come in handy in my life as a homebirth midwife.   The midwifery program involved a lot of researching studies, learning how to critique them, and understanding the value and limits of statistics. So when I had to switch my focus from midwifery to cancer, it turned out that all of this grad school stuff was hugely useful.

It is important to me to keep track of new studies that might be relevant to my case, which makes a lot of sense because we might find something useful that way. But for me it’s also about showing my doctors that I am comfortable in their world and using their language and jargon.  When I meet a new doctor,  it doesn’t take long for me to use a big medical word or otherwise indicate that I have some medical background;  I can see people changing how they talk to me after that.  I seek out doctors who like to teach; that means they are open to questions and being questioned, and will be patient with my need to go deeper into explanations and probably a lot of patients want.

Two things made me notice this vanity of mine about smarts: last summer, faced with a variety of weird symptoms that started all at once, I figured out that it was related to the vagus nerve. My oncologist and others gave me other explanations, but they didn’t make as much sense to me based on what I knew about the vagus nerve and what had happened in my body.   Eventually I went to an ear, nose, and throat specialist  who put a camera down my nose and looked at my vocal cords. Based on what he saw and what I told him about my symptoms, he confirmed that the vagus nerve had caused the problems. I was probably the only patient he saw that month who high-fived her husband upon being told she had vagus-nerve damage.   But I was so pleased with myself! I had figured it out with my knowledge of anatomy and physiology and my careful observation of my own symptoms.

Then later in the year I got pneumonia. One day I felt really rotten and short of breath without knowing what was wrong; the next day, when I went to chemo, I insisted that they checked my oxygenation level even though they don’t usually do that along with blood pressure and temperature.   The number that the pulse-ox machine showed  got me a quick ticket to the emergency department instead of chemo that day, and I was admitted for treatment for a few days. What makes me a bit proud about this is that I figured out something was wrong pretty early in the disease process, so I wasn’t too miserable and it was pretty easy to get rid of.

Another thing we did with smarts (Eric helped) was to create a spreadsheet to track my brain mets.  The written reports were hard to  compare and I noticed the radiologists who were writing them were sometimes failing to write follow-up notes on mets that had been seen in a previous scan and listed in a previous report.  Tracking the mets this way just seems more organized–thus less likely to lead to mistakes–so why not do it? Since the doctors won’t, I do.

So I feel pretty vain about being smart in this realm that I am forced to inhabit.  Sometimes when I don’t feel energetic enough in the brain to engage at this level, I wonder how I will adapt if I ever lose the sharp, medical-smarts part of me for good.  I know there are cancer patients who do none of my self-education and don’t ask a lot of questions, and that must be fine for them.  But for me the educated back-and-forth and discovery of interesting new studies is part of this whole experience–a part that buoys me up.

I’ve been getting intrathecal methotrexate (methotrexate injected into my cerebro-spinal fluid) for about a month now, which makes for a busy chemo schedule twice a week in Albany along with my other chemo regimen. But it seems to be working!

I don’t know what this means for my chemo schedule in the next month or so, but I I know it’s good news.  Only half of patients respond to methotrexate at all, so I’m in that half, which is great.  Now median survival is seven months, with 15% of patients stretching that out beyond 12 months.

Recently a few of my closest family members and friends got together and wrote up a report card for my recent course load at the University of Oncological Resistance (UOR).  It is pretty funny so I thought I would share it.:

Ellen’s report card

Today is “quick” chemo (just methotrexate) and my stepsister Deb, who is visiting, is taking me.  Then we will stop by the Honest Weight food co-op in Albany to get ingredients for all the yummy things Deb is going to cook for us.  Wooo!

I am still really fatigued most of every day–I assume it’s the demanding new chemo schedule.  Hard to adjust to, and I hope it’s just a phase.