Hospice

And a Request

I’ve been trying to begin this for a couple of weeks and just couldn’t figure out how.

I signed up for hospice. I got to the point where I am uncomfortable enough and tired enough that the idea of schlepping up and down to Seattle for bloodwork and more scans, so that I can take a pill that makes me vomit, and may or may not hold my cancer at bay for a year, max, (a year of vomiting) was more than I could mentally handle.

So…hospice.

What this means is that I no longer have any life-extending care and only comfort-supporting care. My team has switched over to hospice nurses, aids, grief counselors, social workers, massage therapists etc. The nurses will still maintain contact with Stacey Cohen, my oncologist.

So, that means no iron infusions, or blood transfusions, no IV fluids, nothing. But I do get pain meds.

I will stay home; here, hospice is not a facility. I will receive all my care at home and die at home.

Mentally, emotionally, I’m doing okay. I grieve as it comes up. I’ve cried hard and then other times I’ve had just a few tears, whatever shows up I go with it. And a level acceptance that I didn’t think I had has settled over me. There’s still the occasional deep panic that comes up, the kind I might feel if I was watching my children get swept away in a powerful river and I was helpless to do anything about it. But it passes, and I’m okay.

We told the children over dinner. It seemed like as bad a time as any. The conversation was as harrowing as I had imagined and also really, really beautiful because we got to grieve together as a family - open, honest and authentic. We kept the conversation going until there were no more tears, and then, like magic, the children were light and breezy and making plans. Once again, the power of a good cry. My plan is to keep the children informed and as involved in the process as they want to be. I want this to be a time that they can look back on that contains both grief as well as deep meaning and purpose.

Jenna (my naturopath, friend and medical rock over the last four years) and I sobbed to each other over zoom during our last doctor-to-patient call. This is what I want in my doctors - human-to-human emotions.

I have family and friends coming to support. Enough that we’ve created a google calendar just so we can keep everything straight.

I’ve been working on a household manual, with Joseph and Aubrey-friendly recipes, what time Zeph gets fed, the compost system, cat deworming, important phone numbers, ways to support, things that are not supportive etc etc. Aubrey has been contributing to the manual by making lists of games she likes to play and food she likes to eat.

But I’m getting tired. My brain isn’t functioning the way I want it to which makes writing a manual hard and, fortunately for you, will keep this last update shorter than the others.

I’ve been reading about the dying process. I’m not keen on the idea of a death rattle, although there are meds that help with that. I am curious about the potential of being visited by late relatives. Whether it’s a hallucination or not, I really hope Auntie Nora pops in.

I came across the idea that I will not be “losing my battle with cancer”. When I die, the cancer dies with me. It’ll be a tie.

I have a request for you, if you haven’t already received it.

IF at some point in the past we have connected and you have fond memories of us, whether in person or online, recently or for ever ago, my request is that you write a story about it for my children to read.

I’m asking for a good memory that you have of the two of us. It can be two sentences or it can be several pages. And also dig up a picture or two. And please send them to this email address: storiesforjanda [at] gmail.com. It can also be multiple stories.

These memories of us will be collected, by my friends, and made into a book for me and visitors to read towards my end of life, and for my children to then keep.

Please send by June 1st.

If it’s not within your capacity, I totally understand.

Please don’t send the memories in a reply to this message.

Please don’t write the memories in the comments here.

PLEASE DO send to the above email address.

In the meantime, here are some pics of me.

Thank you all for the love and support, cheerleading, meals, affirmations, cards, flowers, money, childcare and friendship over the last four years.

I wish I could stick around.

Until we meet again.