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.

Follow the Blog By Email

Just a reminder that if you want to stay updated with the blog, you can simply enter your email address in the box in the sidebar on the right side of this page and you'll receive every post. No more cruising by here to check to see if there's anything new!

New Plan Begins December 29

An angel from my childhood

I'm going to start the new chemotherapy plan December 29. The drug is called Eribulin, and I'll be receiving it as part of a clinical trial. It's already FDA-approved for breast cancer treatment; the study is looking at whether it's effective and causes fewer side effects given more frequently at a lower dose.

I'll continue to receive Herceptin infusions (fights cancer) and Zometa infusions (helps prevent bone fractures) while I'm on the study.

I'll be receiving treatment once each week for three weeks, then I'm off for one week. Then I start the four-week cycle again. After three cycles I'll have a CT scan to check on progress.

I stay with the study for as long as it's effective against the disease. Six months is a typical length of time. Then we look at the additional treatment options.

This drug is generally well tolerated. There are the usual possible side effects (low blood counts, fatigue, nausea, numbness and tingling in hands and feet), but it might be as easy for me as the Navelbine I've been on for six months. I'll just have to see.

It does cause hair loss, so that's a big bummer. A friend and I picked out a wig a few months ago, and I'll order that in January. Mavis, being long and auburn, just isn't me anymore. I've been short and blond for almost two years and I like it, so the new Mavis will be short and blond. This wig may or may not get a name - I'm not really at a point yet where I can feel whimsical and lighthearted about this whole wig thing. I'm not sure what I'll decide to wear on my head most of the time, but it's good to have a hair option.

Thanks so much for your calls, texts, emails, cards, etc. It means a lot to me to hear from you and know you're in my corner! I hope you understand if it takes me a while to get back to you. Always know that I welcome your thoughts for good ju ju or your prayers if that's your thing.

I'm going to return to putting some requests for meals on the Lotsa Helping Hands website (see sidebar if you want a link to that). If you're already signed up to hear about requests, you'll get something in your inbox within the week.

I hope you have very Happy Holidays! I'm looking forward to Christmas and two weeks off before I start the new treatment. I will definitely need something to look forward to in January, though!

CT Scan Results

I had a CT scan yesterday, and the results are mixed.

The good: most of the tumors stayed the same or shrank since the last scan in September.

The bad: the largest rumor in my liver grew, and my oncologist believes I've seen all the benefit I'll see from this chemo regimen.

I have an appointment with her December 15, and we'll review the options and pick a new chemo. There are several standard treatments to try, and I may qualify for a clinical trial.

I know I've kept these blog posts pretty basic and factual lately. That's just the phase I'm in, I suppose. 

I also know that people wonder whether to ask me how I'm feeling and engage me in a health-related conversation. I know it's hard to know what to say to me sometimes. Please know that I don't have expectations around what people "should" say.

I assume everyone in my life is wanting the best for me, and I'm not bothered if we don't have a direct conversation about that.

Sometimes I feel like talking about  my health. and sometimes I don't. I don't expect you to read my mind about that - I'm good at steering the conversation in a direction that works for me in the moment.

So yes, I want to hear from you and/or see you! And no, we don't have to talk about my health! And yes, it's fine if you ask after my health!

I don't want you to avoid me because you don't know what to say. Avoid me for other reasons, like I annoy you or you're tired!

A sense of humor is one of my most valuable allies. Sharing it with you is both fun and healing.