Change in Plan

Early Spring at the Conservatory

Well, it was nice while it lasted, the months of no medical drama.

At my last tumor markers check, the numbers were a bit elevated, which prompted a CT scan in early March, which showed that the liver mets are increasing in size again.

So I need to switch to a different chemo plan. Thankfully there are several to choose from. Two oncologists reviewed my case and both recommend the same plan. It's two different drugs, lapatinib (aka Tykerb) and capecitibine (aka Xeloda), for those of you playing at home.

Both of these drugs are pills I take orally at home. I started them yesterday, and so far so good. I'll stay on this plan for as long as it's effective against the cancer and I can tolerate it.

There's a plethora of unpleasant side effects that I could get, but I just have to go through a cycle or two to find out which of them, if any, will bother me. So I'm trying to be prepared without being obsessed, with varying degrees of success. (It does seem likely I'll be keeping my hair!)

I think there's another tumor marker check in 3-6 weeks, and we'll learn if this chemo is doing some good against the cancer.

This is a setback, and the last couple of weeks I've been on an emotional roller coaster. I've been on this same roller coaster a few times now, and many of the dips and flips are familiar. But unfortunately, just because I remember how scary the ride is, doesn't mean I get a free pass to skip it.

Being an experienced rider,  I've got a number of strategies to help me get through. Here are two of the most important ones:

1. Be Here Now

2. Lean on Family and Friends

After the CT scan about 10 days ago, B and I walked through the Conservatory. I'm not sure I'd been there in March before. Such loveliness!

It always makes me feel better to walk through there. Considering at home we have a total of two scraggly houseplants and a yard that is in constant need of attention, I find it a little surprising.

I've never cared for gardening and know very little about it. But I feel the Conservatory, with its fascinating collection of artfully arranged trees, plants and flowers that change seasonally is an oasis of calming beauty in the middle of stress and strife.

As I move into the new chemo plan we'll update the "Lotsa Helping Hands" website as needed with requests for help.

I'm still working - fortunately I'm in control of my hours and who I take on as clients - and am leaving room for adjusting to this new plan.

In the meantime, I love seeing you and hearing from you. Thank you for sticking with me during the ups and downs.

Doing Very Well

So the latest news is that there really isn't any news. I'm continuing to do very well. Except for feeling more tired than usual at times, I feel like my regular self. Most of the time I go about my business and don't give cancer much thought. I'm not in pain, my stomach feels fine, and my hair is growing. My liver continues to function normally. I'm working, I'm exercising, I'm nagging the kids - it's all pretty normal stuff.

Some things have shifted. Small pleasures seem bigger than they used to. Life has more Technicolor, poignancy and intensity. I feel grateful for how much abundance I enjoy.

But I'm also in the soup of mundane, day-to-day living. I'm running out of bread and taking pets to the vet. I'm behind with email and am putting off a hundred boring projects, just like everybody else.

Right now I think of the cancer as a chronic condition that needs to be attended to. This is the most helpful way I've found to frame it, especially since I feel as good physically as I do. It doesn't define me, and it doesn't need my constant attention.

Of course it has changed my life forever and can feel very heavy and burdensome at times. But I've got a lot going for me right now and am just trying to focus on and enjoy that.

The Treatment Plan

Today I had my 6th round of this chemo drug (Kadcyla). Since it's working and I'm tolerating it well, I'll continue getting it every three weeks.

I'll have another CT scan to check on things in May. (November's scan showed 50% shrinkage of the tumors.) In the meantime I'll continue to have a couple of tumor markers checked (via blood draw) every three weeks. Those measurements give clues about how well the cancer is responding to treatment.

In a couple of months my doctor and I will talk about starting me on an aromatase inhibitor, which is a type of drug for post-menopausal women that lowers estrogen levels in the body and is used for treating advanced breast cancer. Since I'm pre-menopausal I would need to receive injections that put me into menopause. I'm sure that will be tons o' fun.

I hope the start of 2014 has been good for you. As always, I love to hear what you're up to.

Good News

More beauty from the Conservatory

It's about time for some good news. And I received it today: The CT scan I had yesterday showed that all the tumors in my liver are shrinking. Yay!

So this means the chemo is doing some good and I can stay on it. Since I'm managing this drug really well, that's another reason I'm so relieved today - I don't have to switch to something different.

So woo hoo - time for some champagne tonight!

Bring on the holidays. I'm ready to celebrate.

Sneaking In a Breast Cancer Awareness Month Soapbox Post

Before October is officially over, I thought I'd write my own little PSA about Breast Cancer Awareness. I drafted this days ago, but didn't think I'd post it, because it's more preachy than I usually am here. But what the hell - I spent some time on this and sometimes you just have to click "Publish".

In a nutshell, my BC Awareness Month soapbox spiel goes something like this: "Don't put off screening, because it could save your life." Not to get dramatic or anything.

Mammograms and Self Exams

Because I have a family history of breast cancer, I got a baseline mammogram in my mid-thirties and then went in for a mammogram every 12 months starting at age 40. I also did monthly self-exams.

My annual mammogram in January, 2011 was just fine. 12 months later in January, 2012, my mammogram detected the presence of cancer. So in the course of those 12 months, invasive cancer took hold. Had I waited 18 or 24 months instead of going in after 12, I don't know whether I would have been significantly worse off (if at all). But I'm glad I didn't put off getting the mammogram.

There's still quite a bit of debate about which women under 50 should receive mammograms. So the other part of my PSA is, "Read credible sources of information on this topic and talk with your doctor about when you should get mammograms."

And don't forget to do the DIY thing at home! Although I was not able to detect my cancer through that method, many women are.

MRIs and Self Advocacy

Earlier this year I asked my oncologist if I could have not just an annual mammogram but an annual breast MRI. This is because last year it took a breast MRI to detect the invasive cancer (the mammogram caught the stage 0, non-invasive cancer only). After everything I went through last year, I wanted more than just an annual mammogram as a screening tool going forward (no scans or blood tests were on the screening schedule, either).

Breast MRIs are not standard screening tools for most women, even ones with a history of breast cancer - they're notorious for over-reporting findings and leading to unnecessary biopsies.

But my oncologist agreed, and I started a screening schedule of a mammogram in February and an MRI in August. It just so happened this August that the breast MRI picked up on something in my liver that required further investigation. And here I am. I feel both lucky and unlucky.

I'm not saying that I think women should get breast MRIs, or that my case is typical. But I'm glad I asked my doctor questions, presented my ideas and asked for what I wanted.

Family History and Other Factors

When women who both haven't had cancer and don't have a family history of breast cancer learn that I do have a family history, I know that they relax a little. I totally get that.

However, although I've read varying statistics on this, women with a family history of breast cancer make up only about 5-7% of all women with breast cancer. Even women like me who have breast cancer in the family cannot necessarily chalk up their cancer to "family inheritance" (it takes someone trained in genetic analysis to analyze a bunch of stuff to determine this).

Unfortunately plenty of thin non-smokers who eat well, exercise, drink moderately or not at all, manage their stress well, did not get their periods early or go through menopause late, do their best to avoid environmental carcinogens, breastfed their babies and haven't taken hormones get breast cancer. (And we know that men can get breast cancer, as well).

I absolutely think it's worth doing what we can to reduce our risk of getting the disease, but, as we know, shit happens. I don't know what exactly caused my cancer. I've been given wise advice, however, not to blame myself.

88% of women do not get breast cancer. But that still leaves too many who do. If you know someone who has her head in the sand about breast cancer detection, whether she does so out of fear, distraction, lack of knowledge or lack of insurance, please urge her to get the screening she needs. It really could save her life.

Costa Rica and My Fuzzy Memory

At the Conservatory

I had my 2nd chemo infusion a week ago, and it went without a hitch. Just about the only side effect I'm noticing is fatigue, and that's manageable (if I prioritize managing it!)

The fatigue isn't constant and it's not predictable. Well, if I have a short night then I can predict a lot of fatigue the next day. But what else is new?

Perhaps because I'm tired more often or because I'm 46 or distracted or stressed or on chemo or just not very good at remembering things in the first place, I'm having a lot more "senior moments". I suppose those were bound to happen eventually, but they're a little disconcerting.

Like many women (and one or two men), I like talking to a lot of different people, and over time exchanging quite a bit of information, big and small, about our lives. I have a large repository of facts and stories about other people's lives, such as their kids' ages and schools, the health conditions of their aging parents, what movies they've seen, where they went on vacation this year, whether they're allergic to red wine, the latest drama with their brother-in-law, what their work hours are, and so on.

I've never been the greatest at remembering all these details, but now I'm extra slow at recalling them and have to be told some things several times. Case in point, Costa Rica.

I know a couple of families who've traveled to Costa Rica in the last year. The other day someone (of course I can't quite remember who!) was telling me that they were thinking of going to Costa Rica, and I thought, Wait, didn't you go to Costa Rica last year? No, that was someone else. Who else was I thinking of who has been at Christmas? Or was that spring break? Wasn't _________  just talking to me about this? Um, what was it we were talking about?

Suddenly I was in Fuzzy Town.

It's not a big deal, but it's different for me. So I apologize if you have to tell me something three times or I can't remember what you're doing for Thanksgiving. I do care! I'm just in a bit of a fog. So far I haven't mixed any clients up with one another, and I can occasionally make it through telling a story without losing my train of thought, so all is not lost.  

Team Heather

Several people have asked me about the Lotsa Helping Hands online group, Team Heather, and whether I'm posting much in there and how they will find out what we need.

We've only posted a few requests (all of them filled, thank you!) and we've learned that after we add a request to the calendar we need to send out an announcement through that site telling you that there's a new request (or set of requests).

So if you haven't gotten an email from "Lotsa" lately, it's because we haven't posted any requests lately. I'm still working on deciding what to ask for directly, through the online site or just do myself.

The hardest things to ask for are the things I need at the last minute because I realize I've run out of steam. Hey, I'm not in a coma, so surely I can do this myself and not bother other busy people! I know, I've got a ways to go -  I really will get this asking-for-help thing down soon.

I have a couple of friends who've told me, "Call anytime, even if you need something weird". My goal for the week is to do just that.

Team Heather

Yeah, I know the name is corny. But it beats "Heather's Homies" and "Heather's Honchos", two stellar ideas contributed by B. and M. for what to name the online group we set up through Lotsa Helping Hands.

So Team Heather it is. If you're in our city and want to know about meals, rides, and whatever else we think of that would be helpful, you can go to https://www.lotsahelpinghands.com/c/710014/ and request to join the community. Then after you're "approved" you'll receive instructions on how to sign in.

You can check the calendar on the website showing what we're asking for and sign up for anything that works for you.

I'm glad to have learned about this website because I think it will make it easy to ask for support, even with little notice, without feeling like we're putting anyone on the spot. (I won't hesitate to go ahead and put family and close friends on the spot, however!)

If you know someone who might be interested in helping out sometime, please feel free to share the above link. I don't think I can have too many people in this group - the more the merrier.

How I'm Doing

I continue to do very well after the first chemo treatment. It's been wonderfully uneventful. Also the trip that B. and I took a week or so ago was incredibly relaxing and a true vacation. You parents especially understand the difference between a vacation and a family trip. This was a vacation!

Not going to the medical center in the past two weeks has certainly helped me get back into "regular" life and feel less like a full-time patient with a really depressing diagnosis.

So I'm savoring the good times and moving through this, step at a time.

Checking In After a Week

Katsura outside our house

It's been a week since my first chemo infusion of the new regimen, and I'm happy to report that physically I feel pretty good. It has definitely been easier than last year so far.

Emotionally, I'm having some rough days. There are a number of reasons for this, which I'm sure you can imagine. One difficult thing to adjust to is how this is different from my experience last year. Last year the chemo and radiation plan had a defined beginning, middle and end, and I knew that ahead of time. I just needed to get through them and then I could be done.

I really like defined plans. But now, it's one step at a time, and it's a real exercise in going with the flow.

Going with the flow is not my natural way. I don't "play it by ear" that willingly, either. So having to just wait and see how things go with the treatment is really challenging. I just want to know!

But I know that even super laid-back people would have challenges with this one, not just us organized control freaks.

Something To Look Forward To

B. and I are headed out of town tomorrow for a few days to celebrate our 20th wedding anniversary. We're really looking forward to this! We haven't been away together in about a year and a half. The kids with be with their aunts, uncle and cousins and then my friend who is house and pet sitting for us. So I'm so grateful to the Village for helping us out.

And in a surprise twist, except for the fact we have reservations at a B&B, we are totally playing this trip by ear. (Now this I can manage!)

I know we haven't set up the "helping hands" website yet. That's coming probably in a week. I'm kind of dragging my feet because I don't really know what to ask for yet and asking still feels strange. I plan to get over that soon.

Thank you everyone for your love and support. When I'm feeling down and am by myself I imagine each one of you, and that rekindles the feeling of being supported that sustains me.