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.

Doing Fine

I had my first infusion of the new chemo yesterday, and so far I'm doing fine. My nurse told me that the other couple of women they've seen on this regimen are both getting good results, and I find that encouraging.

The one side effect that's pretty well guaranteed is fatigue, and I don't know how or when that will show up. The others are all just "possibilities" that I'll deal with if and when I need to. I'm trying hard not to be paranoid about every little feeling that comes up, and keeping busy with other things helps me do that.

I don't think I'll need to go to the med center until my next infusion in 3 weeks, and that will be a really great break. In the last month I've had 7 procedures, 3 oncologist visits and 1 chemo infusion. That feels like way more than enough!

I'll keep you posted on the latest. I'm still overwhelmed (in a good way) by the support you're giving me - all the well-wishes, visits, walks and prayers - and I know you want to help in other ways, too.

We anticipate setting up a group on a website called "Lotsa Helping Hands" that will make it easy for any supporter to find out what's needed and volunteer for it if it's convenient. More on that later.

In the meantime I love hearing from you, and like I said last year, I like hearing about your life because a lot of the time I'm tired of thinking about mine!

Chemo Start Date Moved

Just a quick post to say that my chemo start date has been moved to this Friday afternoon instead of happening tomorrow morning.

The port placement went just fine today, and I'm happy to have a day's break before heading back to the medical center.

We've Got a Plan

It always feels better to be in action than to be sitting around waiting for test results.

After a couple of consultations with oncologists, I've got a chemotherapy game plan to start with this Thursday. The fact is that there are many options to choose from, and it's kind of "dealer's choice" on what to pick first.

The plan we've chosen to start with requires an infusion at the medical center every 3 weeks. After two cycles, we'll check the tumor markers (that's a blood test) and see if there's a change. After three cycles we'll do another CT scan. If it appears to be working, we'll continue with it. If it isn't, we'll move onto the next chemo plan.

This chemo regimen does not cause hair loss. Yay for me. There are other side effects of course, and we won't know just how this regimen will affect me until I'm on it. It can cause platelet problems, bleeding problems, liver damage (not really what I need), nausea (not as severe as the drugs I had last year apparently), and of course, fatigue (all of them cause fatigue).

But my oncologist says it's "generally well tolerated" so we'll go with that.

So far my liver function is very good and it isn't inflamed. How that's possible with five nasties in it is a mystery to me. Again, yay.

Technical Details

Some people reading this blog have some experience with breast cancer, so I thought I'd include the details of this regimen. You can gloss over this section if you want!

The cancer is still strongly ER/PR/Her2neu positive, which is good news. As I understand it, it means that a variety of drugs, including herceptin and its herceptin-like pals and anti-hormone treatments may be effective against it. Although the cancer returned while I was on tamoxifen (an oral estrogen suppressor for pre-menopausal women), so I'm off of that medication now.

The chemo regimen I'm starting with Thursday is TDMI (brand name of Kadcyla) (which sounds a lot like Godzilla). It's herceptin with a chemo agent "welded" to it. It was just approved by the FDA this year. In a study it looks a little better than another option, capecitabine with lapatinib, so that's why we're going with it as a first choice. We may move on to capecitabine later (or something else) if need be.

Chest Port

Tomorrow I go in to have a chest port placed to make all of this easier (the veins in my arm therefore get to relax). I had one placed in May last year and it was removed this June after I completed a year of herceptin. But back in it goes.

I'll be at the med center for about 6 hours tomorrow, counting all the waiting you do beforehand and the observation time afterwards. I'll have IV sedation during the procedure, so whatever.

How My Family's Doing

Everyone's hanging in there. B. is always amazing and supportive and can be counted on for anything, no matter what. That's really incredible. But he's also tired and stressed, so he's looking for times he can relax. He's going to a baseball game with his brother tonight, which is a good start. Hikes, photography, driving his 1950's car, reading, and going out for a beer with a friend are all things he wants to be sure to keep doing.

The girls are sometimes worried, but most of the time are just moving forward in their lives. They're both having good starts to the school year and are busy with extra-curricular stuff and friends too.

Thank You

I've received a lot of really wonderful messages and hugs lately. Thank you! I appreciate them all. I will let you know what kinds of practical help we might need as we figure that out.

This may turn into a bit of a marathon, so I'm hoping people don't "burn out" in the next few weeks helping us. Save something for months from now!

Please keep thinking positive and hopeful thoughts about me - that makes me feel really good. 

It's Back

Well, shit.

I learned yesterday that the masses in my liver are indeed the return of last year's breast cancer. There is no evidence of cancer anywhere else, so that's something.

The treatment is chemotherapy, and I'm scheduled to start that on Thursday. Before then I have a couple of oncology appointments to learn more about the recommended regimens and to pick one.

There's no cure for stage 4 breast cancer - instead the goal is control, and I've learned that some women are living quite a long time with the disease. I'm choosing to focus on hoping that I'll be one of those.

We will need a lot of help, but I don't know in what forms yet. This will be a day by day experience. The last three weeks have been truly awful and B. and I are both grieving - I think that's the best word that encapsulates the essence of where we're at. Grief comes in cycles as you know, so along with grieving we are living and we are hopeful.

What You Can Do
 
Think positive, hopeful thoughts and imagine the best outcome for me. Stick with me - I'm fighting this, and I need you. B. and the girls need you. Don't stay away because you don't know what to say - we're all just stumbling through this. Don't stay away because you're worried I'll cry or you're afraid you'll cry. That's all part of it.
 
I'll do my best to keep the blog updated with the latest facts and to let you know about practical things we might need.
 
In the meantime, I'm making every day as good as it can possibly be and keeping my loved ones close. Thanks for your continued love and support.

Wow, I Really Did Not Need This

I was hoping never to write in this blog again.

A routine breast MRI a couple of weeks ago incidentally detected something on my liver that required further investigation. An ultrasound last Friday confirmed the presence of two solid masses. These are new since my last CT scan in May 2012 (which was after surgery and before chemo).

I had a CT scan this morning to see if there's anything else funky going on. Luckily there is nothing amiss anywhere else. But there are five masses in my liver (the ultrasound missed three of them).

Monday I'm scheduled for a liver biopsy, and then when the pathology report is back from that (I don't know how long I'll need to wait), we'll have more facts.

My oncologist suspects a recurrence of the breast cancer I had last year. But we don't know anything for sure yet.

I'll have a visit with my oncologist on Tuesday to touch base, even though biopsy results won't be back by then. I'm also lining up 2nd and 3rd opinion oncologists (in anticipation of needing a treatment plan), and having a couple of additional tests.

How I'm Doing

The last couple of weeks (and especially the last week) have been extremely difficult for me. As you might imagine, fear and grief have been frequent visitors. It's pretty exhausting.

But I've been reaching back into my old bag of tricks for getting through this kind of crap, and that involves talking to several key members of my tribe, walking, meditation, distractions, enjoying my family, and taking the occasional lorazepam.

I'll keep you posted.