The time was 2:30 a.m. Saturday, October 3, 2015 ...

Our families had been with us all day and into the night.
Heather's brother and I were at her side at the end.
All our hearts are broken.

[love is more thicker than forget]
by e. e. cummings

love is more thicker than forget
more thinner than recall
more seldom than a wave is wet
more frequent than to fail

it is most mad and moonly
and less it shall unbe
than all the sea which only
is deeper than the sea

love is less always than to win
less never than alive
less bigger than the least begin
less littler than forgive

it is most sane and sunly
and more it cannot die
than all the sky which only
is higher than the sky

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. 

A Few Thoughts on What to Say to Me When You Don't Know What to Say

A few people have let me know that it's hard to know what to say to me. Should they ask about my illness? Should they let me bring it up and never mention it? Sometimes they avoid talking to me because they don't know what to say.

I get it. I myself find it hard to know what to say to people going through something really challenging, especially if we're acqaintances and not best friends.

Recently I came across this article: "How Not To Say the Wrong Thing", and I think it describes a pretty good rule of thumb.

I also think this collection of empathy cards for people with a serious illness, designed by a cancer survivor who created cards she wished she had received, have messages that are really spot on.

Personally I know that people in my life want the best for me, and if that means they sometimes say something that bothers me, I don't dwell on it. So my intention by sharing the article and the cards is not to give you a set of rules that you better perfectly follow if you want to be my friend, but rather some ideas if you're feeling unsure about what to say and not to say.

Honestly, sometimes I want to talk about it, and sometimes I don't. Sometimes I'm feeling good about my day, and sometimes I'm not. Sometimes a simple question like, "How are you?" feels almost impossible to answer - other days it's a piece of cake. It's kind of a crap shoot.

I'm always interested in hearing from you, and if something you do or say doesn't sit well with me and I feel like saying something about it, I'll do so and we'll move on! Or I will simply change the subject. I don't simmer with resentment. I didn't before I got cancer either; now I'm just better at it.

Liver Function Numbers Improving

There's always something new at the conservatory!

Silly me, this was sitting in my drafts folder for over a week now...well, better late than never.


I've been on the new pills for three weeks. Today (July 13) I had blood work done and saw my oncologist. The good news is that the pills have caused my liver function numbers to improve. Yay! They are still "abnormal" (I mentioned last time they have been for months) but are trending in the right direction.

I'll have lab work done again in mid-August and will have another appointment with Dr. N. I'm not sure when the next CT scan will be.

Compared to many other patients, my doctor says that I am tolerating these new medications very well. Afinitor isn't chemotherapy, but can cause some yucky side effects I've avoided.

The new symptom I've been managing this month is fluid retention in my legs, ankles and feet. This is a common issue with liver problems / cancer. I can walk but very slowly, like your grandmother in slow motion (alright, that's a bit of an exaggeration). I will probably need to rethink my shoe situation pretty soon, as most of mine don't fit. I'm sure there are many stylish orthopedic options out there for swollen feet.

There's not much to be done except hope it gets better and keep my feet elevated when I'm sitting around. The whole thing is uncomfortable and annoying, but I'm adjusting.

So far my summer has been slow-paced for the most part, which has been fine. I am learning not to expend energy on a lot of unimportant things or things other people can help me out with. I'm making progress with asking for help - that's just going to be an ongoing process. I am really up and down emotionally, which I think is just par for the course.

Some of the best things about this summer so far:

• Stunning weather
• Time with the kids
• Reading
• Hearing from so many people in my life who care about me

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.

Update as of June 8

C with Caleb the Corgi (I'm branching out from just featuring plants!)

The weeks are flying by. The girls have 6 more days of school (not that anyone's counting), and then we enter that season I kind of love and kind of hate - the kids' summer vacation. Usually I think it's pretty great for 5-6 weeks, and then it's high time for school to start again.

I've had a harder time the last few weeks with some symptoms, some attributable to the treatment and some probably to the cancer itself. But there are also plenty of days I feel pretty good.

Friends and family have been helping us a lot, giving rides to C, making us food, doing some yard work, running to Costco and to Trader Joe's. I know I haven't put out requests on Lotsa Helping Hands - these are offers that people have made outside of that website. There will be other requests coming!

Liver Problems

My liver is acting up. Long story short, last week my bilirubin level was getting too high and was climbing. I had an ultrasound of my liver to check to see if a tumor is blocking a duct, but it showed no blockage. Today my oncologist cancelled my chemo treatment because of the level of bilirubin. She has referred me to a gastroenterologist to consult with (tomorrow) and I have a CT scan on Wednesday to see what is going on. Those are all the facts I have at this time - not too many! I'll write more when I know more.

Cancer as Chronic Illness

I've lived with stage 4 cancer for over a year and half. I found an unusually insightful article about what it's like practically and emotionally for cancer patients like me called "The New Survivors", Psychology Today published it in their March/April issue. I recommend it if you'd like to know more about what I or someone else you know is going through.

Increasingly cancer has become a chronic illness, yet it's very different from say, asthma or diabetes. The article describes several different patients and their stories, and I found I could relate to each one in some way. Although it's a sobering subject, overall the tone is hopeful.

But the primary reason I was glad to find the article and point you in the direction of it is that it expresses truths (some very painful and poignant) that validate my experience that I also I find difficult to write about here.

"This range of emotions - the simultaneous gratitude and dread, the intense awareness of both the exquisiteness and capriciousness of life - may of course be felt by anyone with cancer, from those with the most promising prognosis to those with the least. But for people whose cancer can be explained only as a chronic condition, the inner stew is often far more pronounced because of the sheer length of time they have to deal with it and the utter uncertainty about how it will unfold."

Here's the Latest

Central Park from my friend's parents' apt on the 78th floor

New York was great! I had a great time with old friends and seeing Byron and the kids and various sights. I was pretty exhausted by it all, but who isn't? That city has a lot of intense energy, especially compared to my laid-back Northwest city.

So now back to reality. I started the gemcitibine last Friday, April 17. I receive that once a week for two weeks, have the third week off, and then start a new cycle of two weeks on / one week off. I'll keep going with this and then have another CT scan in July to see what's happening.

I'm not feeling as good as I was a couple of months ago, and that has made me think more seriously about asking for help. It's been hard to recognize when we need help, what to ask for and how to ask for it. I just wrote about this on the "Lotsa Helping Hands" website that local friends and family are hooked into to learn about our requests for help. If you are not a member of my community on Lotsa Helping Hands and want to be, just go here and request to join the community.

Rather than be like your Aunt Mabel who has trapped you at the buffet table at the family reunion to describe all of her ailments in detail, I'd like to tell you a little bit about what I'm dealing with in the context of activities that I frequently do with you.

Taking Walks

I love walking with friends. I love walking the dog (when he is not being Mr. Dawdlepants). However for the last several weeks I get short of breath very quickly, especially going up stairs or walking up even a slight hill. I need to sit down for a little bit and recover, even if I've been walking on flat ground for as little as 10-15 minutes. Standing still for any longer than 5-10 minutes can be challenging. Just picking out birthday cards at the store today required me to lean on the shopping cart (not a big deal, but a change for me). Waiting in the security line at the airport (25 minutes) was a real endurance test.

So please understand that if we go on a walk, it will be slow and kind of short. I will huff and puff. You will not get a workout. But I do need to get out there and get fresh air and walk some, for my health and sanity. I just need to do it differently.

My doctor thought I might have blood clots in my lungs, but this was ruled out by a CT angiogram. So the latest theory is that the shortness of breath is overall related to the cancer changing and not just the last chemo I had. I don't really know what that means, but I'm just working on adapting to it.

Eating Out 

I also love going out to lunch, dinner, and coffee to restaurants and people's homes. But for the last couple of months, my appetite has been down (very common side effect) and some food just doesn't sound good to me at all. I'm not nauseated or sick, but I am often not very hungry.

So if we go out or I go to your house and I don't eat very much, please don't take it personally. I'm kind of funny about food right now.

Making Plans

I love making plans. However lately it is not uncommon for me to develop a fever out of the blue, and then I need to lie down and rest. These are usually pretty low grade and sometimes last for just 3 hours, but I feel very, very tired. If I ignore a fever and push through with my plans instead of lie down, it all just gets worse.

The last full day we were in New York I got a fever and spent most of the day in the apartment while the rest of the family ran around. That was a bummer, but I did what I needed to do. Sometimes I feel very tired even without a fever, and I need to rest rather than go do that next thing.

So if we make plans and I cancel even at the last minute - sorry, I just have to lie down sometimes. We will reschedule!

So in addition to being more open to asking for help, what I'm adjusting to is living life more slowly. I need to take it at my pace, which is slower than the pace of other people my age. I need to pick and choose more carefully what I take on in a day. I still have days when I feel pretty "normal", and that of course feels great.

The Hair Report

Oh yes, the hair. The last time I mentioned it I said that hair thinning / loss was a common side effect of the last chemo I was on. As it happened I did experience hair thinning for a few weeks in January-February, and then that stopped. Good thing I had a ton of thick hair to start with.

So now I have thinner hair and have new bangs to sort of mask the thinner hairline, but I am thrilled to still have my own hair.

This new treatment can cause hair thinning / brittleness, so we'll see what happens.

Thanks for hanging in there with me. I always like to hear about YOU and your life, because God knows I spend more than enough time thinking about my own.

I hope you're enjoying all that's blooming in your part of the country right now.

Lucky Number Six

Orchid at home

I had a CT scan last week, and unfortunately the disease is progressing. Only one tumor (the largest one) is growing but it's growing at a rate that shows "progression", so I need to go off the clinical study and do something new.

My oncologist would like me to see the oncologist from the cancer research center again to see what new and exciting trials there might be there for me. Since I can't get an appointment until May 7, I will start a new chemo plan, Gemcitabine (plus Herceptin), around April 15.

I've been planning a vacation to New York City in April, and my oncologist sees no reason for me to skip that. We are planning my treatment around it. I'll be spending some of the time with very good friends and some with B and the kids. I haven't been to NYC since the time of The Bonfire of the Vanities, and I hear it has changed just a little bit.

I'm sorry that the Eribulin did not work for me, although it was getting to be somewhat annoying, side-effects wise. We'll see what "Gem" as it is called for short, is all about.

So Gemcitabine will the the sixth drug I will try against the disease since September, 2013. Two drugs worked for six months each, two didn't work, and one I couldn't do because I was allergic to it. Hopefully Lucky Number Six here will do some good.

I'm still not in any pain and am managing the nuisance side effects alright. They will probably diminish the further I get from the Eribulin.

This has not been a fun week. Besides the disappointing news about having to switch plans I developed a fever last Thursday and had to have a bunch of tests at the "Urgent Care" clinic to rule out neutropenia and infection. The tests weren't hard, and I wasn't neutropenic nor had an infection, but the fever held on and I felt icky and tired for a few days.

I feel back to normal now and am looking forward to family things and of course New York!

Happy Valentine's Day

Hearts I've been given

Hallmark holiday or not, I like Valentine's Day. I love chocolate and I love flowers, and God knows February needs something to cheer it up a bit.

Since B's birthday is a week before Valentine's Day and he and I always go out for dinner to celebrate, at our house Valentine's Day is a family event at home. I cook something comforting and we always have chocolate fondue for dessert. It is ridiculously easy to make and you want to eat it about once a year, so it fits the bill.

I'm continuing to do well on this chemo plan. There are some minor nuisance issues that I am managing, but they're not too bad. Also I'm more tired, but almost everyone I know is tired (again, February, you are most uninspiring!) You have probably heard about cancer fatigue, and I've had some of that, but thankfully it isn't constant.

I think it's fair to say that overall my stamina is down. Down from when I'm not exactly sure, but I can't do quite as much in a day as I used to, and I need to rest or recover more. This has been happening gradually, but when I'm around people with high energy I am reminded of it. Some days I have pretty high energy, and some days I don't. Considering I've been on chemotherapy continuously for over a year, I'd say I'm doing quite well.

Heather in our garden right now

B and the kids do a lot around the house. B cooks dinner now (previously my job), and the kids pitch in and are very capable. Last weekend M cleaned almost the entire house without being asked while the rest of us were out for a few hours. (Don't worry, she's a normal 16 year-old most of the time).

My spirits are good a lot of the time. I don't write in this blog when I'm feeling down, so I'm realizing now reading over it that I sound pretty damn plucky. There are plenty of low points, and I'm thankful to have people to turn to when those times come.

The next milestone will be a CT scan probably the week of March 16. That will be after three cycles of this drug and we'll see if it's doing some good.

Doing Well

New Treatment

I started the Eribulin about 10 days ago, and so far it's been going fine. I've just had two out of three weekly treatments in the first cycle, so I'm still feeling my way through it.

The effects feel minor at this point, and while I don't feel quite as good as I did on the Navelbine, it's a little early for me to come to any big conclusions about how I'm going to tolerate this regimen. Overall I'm aiming for being aware of effects without obsessing over every little thing.

Genetic Testing Results

I received results from the genetic testing I had, and the news is good. There was no mutation found in any of the genes on the High Risk Breast Cancer Panel. This includes six genes related to hereditary breast cancer - BRCA1 and BRCA2 (which we've all heard about and which I tested negative for in 2012) plus CDH1, PTEN, STK11 and TP53 (which I'm sure you haven't heard of yet).

Because there is no history of cancer on B's side of the family, and because I do not have these gene mutations,  M and C also do not have them. Hopefully that will mean a little less stress for them as they move into their 20s and 30s and are talking with their doctors about cancer screening.

Of course it may be that I have a mutation in one of these genes that current technology cannot detect. It may also be that my family has a mutation in a gene that was not included on this panel, or that there are multiple genes that in combination point to a higher risk of cancer in my family that have yet to be discovered.

Why?

We don't know why I developed breast cancer, and I'm past being bothered by that (you know, for the most part).  I'm a lot more focused on just living with this chronic illness the best way I can. And obviously I'm also focused on doing anything I can to help M and C (and their future children) learn about and minimize their risks for getting cancer.

One thing I've learned in the last few years is to take what I read in the mainstream media about cancer with a grain of salt. Most of the articles require some digging on the reader's part to substantiate the claim that grabs your attention in the headline.

For example, you may have read recently an article claiming that a new study shows that about 70% of cancers can be chalked up to "bad luck". Turns out not everyone agrees with this statement. This is a pretty good analysis of how good the reporting was and how tricky it is to synthesize studies for a mainstream readership, in case you're interested.

I don't rely on just one article in even the New York Times to inform me fully about an issue related to cancer. I check different sources and also ask my doctor.

New Photos

The Conservatory, where most of the photos on this blog were taken, is finally open after several months of remodeling. So I'm happy to have some new photos to add. For those of you who may be new here, the Conservatory is close to the medical center where I receive treatment and in 2012 during radiation I started visiting it almost daily. It's in my favorite city park.

I don't go as often as I used to, as treatment days are Mondays and the Conservatory is closed on Mondays, but it's still a special place I like to visit, even for just 10 minutes now and then.

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