“hanging in”

That’s what I tell inquirers when they ask how I’m doing and I have nothing to say that is particularly interesting.

So over the past week it’s been pretty much like that, except for good news from my recent MRI and CT scans: nothing known to be new; nothing bigger than last time; lots of things–and by things, we mean tumors–that stayed the same size.

Maybe some other notable things happened this past week, but I just don’t remember them at the moment. Chemo is weakening my memory for sure. However, at least now you know that I am still around and still hanging in. Or a reasonable Internet facsimile is.  But ouch.  Would a mere reasonable Internet facsimile have such intense back pain and complain about it this much?

Guest post: Spee’s update

Spee sent out this update last week by e-mail, and I thought it was worth putting on the blog to fill out the picture.

Hi, family and friends –

It’s been a while since I’ve sent out an update because of more frequent blog postings by Ellen and some awkwardness there.  But today I spoke with her about this and described the need, and she released me to update you all freely.

What’s happening first and foremost is that Ellen is slowly but steadily declining, but still hanging in there.  She is increasingly tired and disabled, with decreasing stamina, more frustration and anger, reduced cognitive functioning, and more withdrawing.  These are small increments but especially noticeable to those of you who see her less often than I do. 

Ellen spends much of her time in bed, but tries hard to come down for meals and occasionally do fun things like go for ice cream or to an event.  Of course, she has many medical appointments and she is able to get to most of these, with Eric or Kathryn or someone else as driver and companion/helper.  She uses a walker that has a seat onto which she can rest whenever she wants, and that helps a lot.  She has a wheelchair, but really doesn’t like to use that.  As you may have seen, Eric rented a scooter for her use in Montreal and that worked out quite well (see the recent blogpost about the trip).

Ellen is now taking methadone regularly and one question is how much that might be contributing to her increasing tiredness and other worsening symptoms.  The visiting nurse Elizabeth says that methadone could be a factor, but the most influential factor is likely the week after week, month after month doses of triple chemo.  There could also be disease progression as well, she says.  In addition, Ellen’s broken foot is healing slowly and still causes pain, which gets her down.  Ellen is committed to continuing the chemo as long as it’s keeping the cancer in check.  This coming Tuesday she’ll have the routine scans to see how that’s going.

In other news, Will is enjoying his summer grounds-keeping job at Buxton School.  He comes home most weekends and brings upbeat energy into the household.  This morning, he, Eric, and Jesse were happily making a big brunch while music blared in the background.

Jesse is home for the summer and spends much of their days in the basement on the computer.  They also watch TV with Ellen about once a day, with the two of them enjoying snuggle time and conversation about what they’re watching.  Jesse has lots of appointments that get them out of the house and they have a volunteer job they really like, which is volunteering once a week at a wildlife rescue center. 

Eric is tired and he requests that people stop asking him, “So how are YOU doing?”  He is taking care of himself by running regularly, taking one 8:00-8:00 day off each week (what we call Woodstock Wednesdays, currently with Helen and me covering), and playing squash at Simon’s Rock on Mondays and Wednesdays while Anne and Sandy are covering dinnertime.  He continues to prefer to spend a lot of time with and caring for Ellen over working or doing household chores, so the help that others are providing the family is generally in the realm of household functioning.  It seems they’re ready for the extended circle to start contributing dinners once a week, and Sandy will arrange this with Chris De Roller.

As for Helen, Gene, Jens, and me, we gained access in May to more people trained in hospice and available to those around Ellen, even though she isn’t on hospice.  We’ve benefited from time with both a social worker and a chaplain, who are part of the same team as Elizabeth is on.  We also have super help from Maizy, who’s working about 25 hours/week supporting Helen and Gene mostly with driving and our household mostly with kitchen duty.  Natalie and Aaron also step up and step in in many lovely ways.

The “Rings Fellowship” that Emilie or Dee hosts every other week is super helpful.  We continue to be extremely grateful for that. 

I’m also grateful that Ellen is keeping some sense of humor, as we sure need that, and that she finds joy in looking out over the lovely meadows and forest that surround us.

While I’m on a gratitude run, I’ll add that I’m grateful that Jens is staying centered and spreading love, that Eric is maintaining his stamina and wonderful spirit, and that Elizabeth is such a terrific hospice-trained nurse that she can hold the most difficult conversations with Ellen.  I’m grateful to Kathryn, Ellen’s sisters, Helen, Gene, Sandy, and others who are constantly thinking with deep love about what else could be done for Ellen, Eric, Jesse, and Will.  And thanks to the rest of you for your waves of love and Light.  You make the journey lighter.



End of today


Charging my apple
Charging my apple

Today’s chemo was the start of some cycle or other–9th intrathecal methotrexate maybe, and 6th carboplatin & gemcitabine?  I am not keeping track right now. In fact for the last week or so I have not only been deeply physically tired but also very ungrounded on day of the week, day of the month, the month itself.  My routine at NY Oncology Hematology keeps changing and I am just having trouble keeping up with things.  Like, is it April or is it March still?  Or possibly it’s already June?  Yikes.  Hope the fog passes over soon. And noticing how dependent I have become on the iCal app on my phone.

Cerebrospinal fluid is still coming back clear–no more cancer cells circulating–so that’s continued good news.

Today we were at NYOH from 1:30 to 5:00.  Whew!  Blood draw for lab work, visit with the Nurse Practitioner who works for my oncologist, IT chemo, then regular (through the port) chemo, then finally all done and out the door at 5:00.

I got right in bed because I could feel I needed REST.  Getting better at realizing that, maybe, instead of trying to power through it.

Asking and asking and asking for help large and small

orange being peeled for me
orange being peeled for me

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.

Reality check

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.

Vanities: smarts

(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.

IT Methotrexate is working!

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!

Texting with my oncologist
Texting with my oncologist

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.

My report card

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.