Setting Expectations

We had a difficult night on Wednesday, battling restlessness and discomfort. Staying ahead of pain in hospice is a complex and inexact task, especially when the patient can’t clearly express what she is experiencing. Fortunately, with the aid of the visiting hospice nurse and social worker this morning, we were able to settle on a new routine of medication that will help Heather a great deal. And we are switching to liquid medication for her ease and comfort, as swallowing is a difficult exercise now.

Heather is no longer mobile, even with the aid of oxygen, and will spend her remaining days in the hospice bed in our living room. It’s set up by the big south windows looking right out into the branches of our dogwood trees. They are changing from a soft green to a brilliant red, with leaves falling every so often through the sunlit canopy.

I want to share with everyone a few reflections on Heather’s experience these last two months, and I hope that they are helpful in setting expectations for everyone who has circled Heather and our family from near and far with care and support since her first diagnosis in February of 2012.

When she made the decision to end treatment in September, she made it clear to me that she did not want to suffer, and she did not want to linger. Our hospice team’s goals are directly aligned with that first wish. But of course, we don’t know how long her intention to stay or go might take. Based on the experience of hospice nurses, it could be a week. It may be only days. What is clear is that Heather is, as she has always been, the driving force of her experience, clear to the end.

In my many hours sitting with her, holding her hands, talking with her about how much I love her and how wonderful she is and how annoying the dog can be and how the girl’s days are going, I have consistently been surprised by the glimmer of her old sense of humor in even the briefest response, the sheer force of her will in moments when I can’t imagine she has any strength left in the day, and the flash of that smile I will never forget.

I have been reading her the notes and cards, text messages and emails, poems and anecdotes from so many people from all over, all of them offering thoughts on how they know and will remember Heather. Feel free to keep them coming. I will respond as best I can to express her feelings as I share them with her. (Who knew “emoji” were actually useful?)

Heather has had some truly remarkable visits from old and dear friends in the past weeks, and our families of course stay close as best they can. It has now come down to this small world of wonder we have today. I thank all of you for your part in building it for her and for all of us.

-Byron

I learned not to fear infinity,
The far field, the windy cliffs of forever,
The dying of time in the white light of tomorrow,
The wheel turning away from itself,
The sprawl of the wave,
The on-coming water.

from “The Far Field” by Theodore Roethke

An Update from Byron

I know it's important for everyone to hear about the state of things for Heather, and it's always hard when the news starts coming from the caregiver and not directly from the patient, but it's now that time in Heather’s journey.

During July and August, the oral treatment that Heather started after chemo began to show some promise, but lost its effectiveness after eight weeks. This was an all too familiar pattern. After over two years and treatments that included 13 different cancer drugs, oral and infusion, it became clear to Heather that further treatment would do little to stop the progress of the disease or add to her quality of life.

At their appointment on September 11th, Heather’s oncologist agreed with her to end treatment for her disease. This was an incredibly difficult decision, but also crystal clear to her.

We were immediately referred to home hospice services, and while it has been a whirlwind couple of weeks getting things going, we appear to have hit a bit of a rhythm at our home. The hospice folks have been very informative and attentive, and all services and equipment are received at our house in short order. It’s an exceptional program.

I am on family medical leave from my work as of Thursday the 24th, so I am at home full time as primary caregiver for Heather. After two weeks out of treatment, she is still able to get around the house, but her fine motor skills and her balance give her trouble, so she needs someone with her around the clock to help her and ensure her safety and comfort. She is using a walker to get around the first floor, and has oxygen to assist her when she is exerting herself.

Heather spends most days resting in bed. Her pattern this week is getting up around 9:00 or 10:00, hospice workers of various sorts coming and going from late morning to mid-day, and family and friends visiting in the afternoons -- though not too many. She is up for 20 or 30 minute visits, just some time to chat, listen to stories, or sit in caring quiet. Evenings are spent with the girls after their school and sports. The girls are both close and tender with Heather and me. We are a tight team.

For those who would like to share their wishes and caring with Heather, please note that I am reading her the texts and emails that she receives each day. Cards are welcome, and she enjoys having them around. I will be regularly posting to Heather’s blog to keep information moving, but I will also ask for patience in all matters as care giving will always be my priority.

Heather and I thank you for your thoughts and prayers, and we send our best to you and your loved ones. Take care of one another.

-Byron

Trudge, Trudge, Trudge

Nico is almost as stressed as I am

I used to walk, then I strolled, moseyed, and now I trudge.

So the update on the fluid retention situation that started a couple of months ago is that it continues. I've gained 25 pounds of fluid, from below my chest down to my feet.

My mobility is much more limited and I have more shortness of breath. Standing still for more than a couple of minutes is difficult, even with the assistance of a cane. My appetite is lower than its usual low.  The whole thing feels cumbersome and heavy and just pretty unpleasant.

I am really grateful that I can still drive. I've got to get out of the house and it feels good to be able to do that myself (even if I can't walk much once I'm out!)

I started taking a diuretic this week to help reduce the fluid in my legs. Next week on September 1 I'll have a paracentesis done, where a doctor will drain fluid from my abdomen. I understand that will provide very temporary relief but I'll take it.

Friends and family have helped us out a lot lately. Running errands, installing grab bars in the shower, providing meals, trimming hedges, giving rides to me and to C - these have all been so great. (Most of this assistance has come from close friends and family I talk to frequently rather than the whole Helping Hands community if you're wondering whether you've been missing requests on that website).

I continue to take the non-chemo, cancer-fighting medication at home, which thankfully does not bother me. I'll have my next CT scan on September 10.

In the meantime, what I'm most appreciating now are visits at my house or yours or the occasional coffee or sit in a park where I don't have to walk much. Phone calls are good, too. An hour is kind of max for me, then I get tired. I don't get tired every hour when I'm home alone, but being social, while fun, takes it out of me. But seeing people is essential for my well-being.

I hope it will be easier for me to go to movies and out to eat soon if we can get some of this fluid retention under more control.

This continues to get harder emotionally, and I have good support to help me with that. Over the last couple of years, the anxiety and emotional stress have been at least as challenging (and sometimes much more so) than the physical difficulties of the disease and treatment.

The kids have been so great this summer - very helpful and kind - and also are leading normal teenage lives, with some physical activities like crew and swimming and a lot of screen time. They go back to school September 9. It will be M's senior year and C's freshman year in high school.

I can't say enough great things about my husband, B. He takes care of so much and always, always listens. That just scratches the surface of how awesome and strong and supportive he is. I could gush for many paragraphs. 

Off of Chemo

Back to the Conservatory

I wish I could say that I'm off of chemotherapy because the disease is stable, but last week's CT scan showed that it still continues to progress and my liver is not functioning well enough to tolerate chemo right now.

My liver function tests have been abnormal for months but not to a point that I couldn't accept chemo. Now there are a couple of "worrisome" numbers.

Yesterday I met with my oncologist and she is having me take two medications (both are pills I take at home): Aromacin (an aromatase inhibitor that lowers estrogen levels in postmenopausal women) and Afinitor. Neither of these are chemotherapy and my doctor has seen positive results with these drugs in some patients like me.

This is also the course of treatment that the oncologist I've seen at the cancer research center recommends. 

So this is a week by week (or day by day) experience now. I'm hoping the particularly troublesome liver tumor shrinks and my liver function improves.

I continue to feel good on some days and not as good on others. It varies quite a bit.

Good News

What a nice surprise - the CT scan I had Tuesday showed that the chemo is still working (contrary to what the tumor markers were telling us). The liver mets are still shrinking, and the other areas are stable.

So I get to stay on Navelbine + Herceptin for a while longer. I go in on Monday to start another round. A round is three weeks long - I have an infusion two Mondays in a row and am off the third Monday.

I'll still meet with the other oncologist next Thursday to talk about clinical trials and her take on standard treatments that are still available to me.

I've got several fun days ahead, and knowing I can stay with the status quo will make them even more relaxing!

Mixed Results

I do love a dahlia

I've been so busy living my regular life that I haven't written in a while. 

There hasn't been much to report lately. The navelbine chemo treatment I started a couple of months ago has been pretty easy and life's been smooth. I've been busy with work, and there's plenty to do at home and with friends this summer.

CT Scan

I had a CT scan to check on things yesterday, and the results are mixed.

The good news: Several of the liver mets are smaller. Yay! I haven't had this kind of good news since November.

The not-so-good news: The cancerous spots in my bones are larger and there are more of them. I don't even have a specific number. Let's call it several to many. They are in different places in my pelvis, spine and one in a femur.

The mystery: There's a spot in my lung that could be cancer but it's too small to tell. It's larger than it was in the last scan.

I don't have any pain. I'm very grateful for that. So all in all, it could be worse.

And it could be better.

The Plan

I will stay on this navelbine treatment for another two rounds (about six weeks) and then have another CT scan. Hopefully the liver mets will still be shrinking.

My oncologist says that especially as cancer spreads to other areas it may not all be responsive to the same treatment. She decided since it's very important to keep the liver mets under control, and that the navelbine has been doing that, we'll continue with it even though it is not shrinking the bone mets.

At the dahlia garden at my favorite park. You know, the one with the Conservatory!

How I'm Doing

Scan and results days are never fun ones. So my week so far has not been the greatest. But overall, I'm doing very well. The past nine months are some of the best in my life, and they've also been some of the hardest. Funny how it works that way.

I haven't been asking for much help lately for several reasons. One is that I've been feeling good most of the time, so asking for help feels strange. Another is that as long as I don't ask for help I can tell myself how well I'm doing and then that's not so depressing. And yet another is that even with the Helping Hands website up to make it easy, I still don't find it easy. I'll work on that.

In the meantime, we're going on a vacation in about 10 days to San Francisco, and I'm really looking forward to that. We're going to spend Labor Day weekend on a nearby island with old friends,  I've got a weekend lined up in September with my two BFFs from college, and time with sisters-in-law here right after that. It's always good to have fun stuff on the calendar!

I hope you are having a wonderful summer, and I'll keep you posted.

New Chemo Again Today

Time for navelbine today, the lastest (and greatest? I'm ready for something like that) chemo drug I can cross off my bucket list. Were I to have a bucket list of chemo drugs, that is, instead of European countries or types of chocoate dessert...

Navelbine is given through my chest port at the medical center, and it's a "push", meaning the nurse spends about 6 minutes holding the medicine in a syringe and slowly pushing it into my line. Easy peasy. I also had a 30 minute Herceptin infusion today, so it was a much shorter and less eventful trip to the medical center than 3 weeks ago.

Some people have asked me about the allergic reaction to Doxil I had. Immediately I had trouble breathing, my face swelled up and I had back pain. The nurses came right away, and the benadryl and pain medication kicked in and I was back to normal in a few minutes (though loopy as hell for the rest of the day).

I forgot to write with the results of my bone scan. Thankfully that didn't turn up any new surprises. So I still "just" have the two spots of cancer in my spine and left hip that the abdominal CT scan turned up last month.

I have no pain or side effects from the cancer - all the side effects I've experienced so far are just from the treatments. And right now I don't have any side effects from the treatments besides maybe a little fatigue (who knows?) So I'm in a good place.

Assuming I tolerate this plan OK, my oncologist thinks we'll do another scan after three rounds of it (that's in about 8-9 weeks).

In the meantime I've got plenty else to do and think about. Work has picked up more lately, the girls have dance performance dress rehearsals and shows this week, Father's Day is coming up and C's 13th birthday is the 20th, the day after the last day of school.

Yet Another New Plan

Well, since Doxil is something I'm severely allergic to, we're leaving it behind. Although I'm bummed to take off the table a drug that could be effective against the cancer, I do highly value breathing. So we're switching plans.

It will be Navelbine + Herceptin, beginning June 9. Those are also infusions at the medical center, as opposed to pills at home.

I developed a fever in the middle of the night last night (not bad but at the level where I need to go in to see if I have an infection). At 5:30 this morning B took me in to Urgent Care and long story short, I don't have an infection. That took 2 1/2 hours and a bunch of tests to conclude. The fever is probably from one or both of the drugs I received yesterday. 

So it's been kind of an exhausting 24 hours, and I'm taking it totally easy today. 

There are various appointments ahead - a bone scan May 27 to get the whole bone story, a heart scan (aka MUGA) on June 6, which I've had about 8 times before and is standard when one is on Herceptin, and another fun "Menopause Now" injection at the end of this month. (That really wasn't too bad but I will spare you some of the weird details about it).

I wanted to get this update out, and now I will go on to something completely unrelated to medical treatments, like a walk, my book, Wordament (a Boggle-like game on my phone), and maybe some bad TV later tonight!