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.