P.S.

Oh and also that paper was accepted with just some easy revisions!!!

And we did this in the lab:

file-dec-09-8-45-43-pm

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san diego

Refractory period continues. But here’s a little update.

I was in San Diego for the Society for Neuroscience meeting. It had been my goal when I started chemo to get well enough in time to fly out there and present. And I did manage to get well enough to prepare, and to travel, and to present at the 2 sessions for a total of 6 hours. I have been saying to friends that I felt noticeably off my game. Normally I love wandering around and bumping into as many people as possible in order to catch up and make my presence known. This year I felt overwhelmed by the waves of faces coming at me and spent a very minimal period of time at the conference itself. I had enough interactions to warrant 5 follow-up e-mails. It is enough, for this year.

Before the conference I spent about 2 weeks preparing the presentations. I went through the initial stages of preparing a major NIH grant, to submit in June. I caught up on everything that has been going on in the lab, admin wise, which was a more significant endeavor than I thought it might be. It feels happily luxurious to be in a lab where you step away for 2 months and miss the beginning of entire projects and groups of undergrad volunteers being brought in. Where things are always moving, and almost always moving quickly.

I’m feeling OK. I’m trying to just pretend to be normal.

Here are a few pictures.

My fingernails show rings like a tree, for each round of chemo. Percy is a constant loving companion. And those are 2 students I have the privilege and pleasure of working with, as we headed out the door to a poster presentation/reception in SD. That dude in particular is the only reason that data continued to accrue despite my taking time off over the summer.

kinds of doctors

I am here, living my life. I figured this might happen; that there would be a refractory period for which I didn’t want to think too much about the events of the past 8 months and avoid contemplating enough to write things down and put them here. I think that’s OK. I am still writing in my mind. But I am spending more of my writing energy and time on science at the moment.

Nevertheless (you can tell I’ve been writing science, using these searched-for on the thesaurus alternatives to …; however, or Moreover, or Furthermore, ) I had my first oncology follow-up since chemo this afternoon and I thought it would be appropriate to say hello.

I have been back at work since last Monday. I finished the paper. I think I already mentioned that. I am feeling good. Actually, I am feeling great! I had a post in my mind that I will write about how the past couple of months have taught me that I have a remarkably low bar for what it takes to entertain myself and get through a day on the Earth. How little I am capable of ‘doing’ in the span from 8 AM to 11 PM, yet still feel satisfied with life. But I’ll write that later. Because my point right now is that it feels great (!) to be back in the world of people and to sit with the lab while I eat my lunch and throw out sarcastic and/or clever joke comments and to laugh and to say hello to acquaintances in the hallways and have them double-take at my pink hair and to banter with my coffee barista people and to spend a moment alone in the evening as I pack up my laptop and lunch tupperwares and sigh with satisfaction as I look at the lab or the office and appreciate the pursuit of knowledge for its own sake.

Medically speaking? I am not able to fall asleep, would be my chief complaint. The hot flashes and internal temperature swings continue.. if you only realized how much a bald chemo head could sweat! But, nevertheless (tee hee), I’ve been implementing a strategy where I pretend to know that I’m going to fall asleep at about 11 PM and then just lie there for hours, resting, and eventually drift off around 4 or 5 AM. I brought this up at my appointment today and have a few actionables. Have been referred to an ‘integrative’ specialist who can help with non-pharmaceutical strategies. May also try over-the-counter melatonin. I don’t think they sell it at Shopper’s in Canada, but it is readily available here in the States.

The main point of discussion today was planning a multi-pronged follow-up approach. This reminded me of a message that came up on the leiomyosarcoma listserv about a month ago about explaining to the non-cancer people in your life who the members of your health care team might be. I have a little org chart mocked up in my mind that I will, again, post at a later date, but for now I thought it was amusing to list the number of kinds of doctors that I am currently scheduled to follow-up with for the next 2-5 or maybe 10 years or maybe forever.

  • surgical/orthopedic oncology (given the site of my tumor)
    • and of course, relatedly, chest CT every 3 months
    • MRI of arm and tumor site every 6 ish months
    • full body PET every 12 months
  • medical oncology (given chemo)
    • plus check on and flush my port every 6-8 weeks until removed
  • radiation oncology (given radiation, and best-practice guidelines)
  • cardiology (given potential effects of chemo drugs on heart)
    • in same category echocardiogram every 3 months
  • OB/GYN (given premature menopause)
  • ophthalmology (given site of my original RB tumors)
  • oh, and my GP because I believe in preventative medicine and annual check-up

I feel like I’m collecting doctor types and need a punch card with which I will soon claim my rewards for finding one of each. Fortunately I like all of these people.

Alright. I am going to begin to prepare to pretend to sleep. Cross your fingers and maybe it will really happen tonight. xoxo

sickness behavior

Working on a lit review for a grant and came across this paper.

Gaykema RP, Goehler LE (2011) Ascending caudal medullary catecholamine pathways drive sickness-induced deficits in exploratory behavior: brain substrates for fatigue? Brain Behav Immun, 25:443-60.

Just gonna leave this here for my own future interest, since this sounds familiar:

‘Immune challenges can lead to marked behavioral changes, including fatigue, reduced social interest, anorexia, and somnolence, but the precise neuronal mechanisms that underlie sickness behavior remain elusive.’

day +2

I am back at work this week and have spent the entirety of my energy on finishing that paper I keep mentioning, so today I will just say that the paper is done (!) and I believe that my taste and smell are starting to return a tiny bit (!!) and I am now tired.

I found this excellent piece of writing that articulates many of the same thoughts that have crossed my mind since February. If you go and read it, it may help understand in part my trepidation at writing online about this experience with my real name, as a pre-job and pre-tenure individual who would one day like to be with-job and with-tenure.

Cancer on the tenure track- an invited post by Martha Lincoln

From one of my fave blogs, The Professor Is In by Karen Kelsky

agony of options

Disclaimer: This is my personal experience and not medical advice. I am not a medical doctor.

I think one of the hardest things to internalize when having cancer is that every patient is unique. Not only in standard metrics like category of tumor, subtypes, histological profile, stage, but most important, in the details of your life story. In the way the rest of your body responds to the tumor and to the treatments.

Ergo, disclaimer. One person’s experience.

In the life cycle of having cancer, I think the in-betweens are harder than the treatments. What I mean is, the time spent collecting information and deciding what to do.

This hit me hardest in the period after surgery and before starting chemo. The major decision I had to make was whether to go through with chemo, and if so, what type and how much.

The first clinical issue I came up against was the use of ‘adjuvant chemo’. Generally, chemo is prescribed under two circumstances. If tumors are present that can’t be removed with surgery or ablated by other means, chemo can be given as a first line treatment to shrink them or prevent their growth. Alternately, if tumors are removed in the initial stages of treatment, ’adjuvant’ chemo can be given as a sort of preventative measure. To clean up microscopic clusters of cancer cells that may have been left behind. Prevent secondary tumors from forming.

On this issue of adjuvant chemo, there seem to be two camps. One mindset being that there’s no sense giving a toxic treatment without the ability to directly measure its effects. If there are tumors, you can check for reduction in their size between rounds, to determine whether it is worth continuing to infuse toxic drugs. On the other hand, absence of visible tumor on a scan does not imply absence of tiny amounts of cancer cells lurking in the body. Adjuvant chemo could potentially eradicate eensy weensy clusters of cancerous cells left behind near a primary tumor location, or cells that may have escaped into the bloodstream or other fluids (like lymph) that circulate throughout the body.

Hmm.

A complicating factor: if you say yes to adjuvant chemo, you may ‘use up’ your one opportunity to play that card, and not be able to receive the same chemo again if cancer returns.

For example, one of the drugs I have been getting (doxorubicin / Adriamycin) is associated with cardiotoxicity. It seems that the more of this drug you receive in treating cancer, the greater your risk of developing heart failure later in life. To avoid putting patients at undue risk for heart failure, a restriction is placed on the total amount of drug you can receive in your lifetime. Of course, to keep things interesting, I realized I had been given anthracyclines, including Adriamycin, in childhood to treat my retinoblastoma. Now in present day, proceeding with one of the recommended regimens for my type of tumor would bring me to the suggested lifetime cumulative dose of the drug, even just above it.

Hmmmm.

As I was faced with these decisions, I went into primal research mode. I read results of clinical trials and review articles proposing standard treatment protocols for sarcoma. I read some archives of a listserv populated by leiomyosarcoma patients.

At this point I discovered another complicating factor. There are few, if any, published studies monitoring the effects of adjuvant chemo on specific sarcoma subtypes. These studies are tricky because the only outcome you can really measure is whether patients remain cancer free. This means you must keep track of your group of patients for 5, 10, 20, even 30 years. Plus when dealing with rare cancers, a given hospital may only see tens or hundreds of patients over the course of a year. It is therefore more desirable to include data from multiple hospitals, which in turn makes the studies challenging to coordinate and expensive to keep running over decades.

To quote one of my beloved early mentors, ’science is tough’.

Hmmmmmmmm.

Let’s skip to the punchline that all of my research did not give me answers.

What it gave me was the basic language of leiomyosarcoma. Just enough words. The types of tumor, the names of drugs. The current treatment protocols posted online by the NCCN and BC Cancer Agency.

It gave me enough information to put my personal life story in context. It gave me reason to include that first disclaimer at the top of this post.

Going through surgery, radiation, even chemo- these are passive processes once you commit. You show up and suffer through the aftermath and then it’s over. In contrast, weighing the options of whether to go ahead and put yourself through these treatments in the first place, treatments that may have anywhere from a 1% to 99% chance of quashing your cancer, and simultaneously a 1% to  99% chance of affecting your ability to go about your day-to-day life? This is not straightforward. It can be agony.

I think it is fair to say, be wary of the doctor or survivor or patient or friend who tells you ‘it’s a no-brainer’, ‘an obvious choice’. I think the good doctor will remind you, regularly, so many times, that it is your decision. That no one can see into the future. I had many health care people say, ‘If you were my sister…’ ‘If you were my daughter…’ then ‘I would…’. But ultimately, ‘you are you’.

Some decisions are more straightforward. But some decisions are agony.

All I can do to conclude this story is remember and share what I thought about. How I ultimately arrived at my decision, once I knew the language. I thought about what I had read in my pathology report with respect to staging and grade and size of my tumor. I thought about my personal experience of that tumor, the timeframe within which it went from a pain in my elbow to a detectable lump. I thought about the recommendations of my doctors. I thought about my age and health. I thought about my previous cancer and its associated treatments. I thought about lifetime cumulative doses. I thought about my genetic predispositions. I thought about what I had planned to do for the next few years, the next 5-10 years. I thought about my current employment situation. I thought about my relative proximity to an excellent cancer hospital. I thought about my personal finances. I thought about my insurance coverage.

Most important, I thought about my level of comfort with not having a measurable outcome. Through my work I’ve spent hours and days and weeks staring through microscopes at eensy weensy clusters of brain cells. I have an appreciation for how they exist and change. I could imagine adjuvant chemo affecting rogue cancer cells, in the absence of bigger measurements of tumor size changing on a CT scan. I have a fairly high tolerance for uncertainty.