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.