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.

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.

Happiness is a Warm Puppy

It's been three months since I've posted, and almost a year since my surgery. I thought I'd write an update about how it's going.

The title of this post was inspired by my dog, Caleb (and of course Charles M. Shulz). Caleb the corgi looks up adoringly at me like this frequently.

To be honest, he kind of adores me but really adores the treat I have in my hand... 

A lot of the day while I'm working he's sacked out, like this.

At other times, he's trying to steal a bagel off the table or is barking incessantly at squirrels. But most of the time, he's an easy, amusing companion.

Often I'm able to find moments of happiness through very simple means, such as noticing my dog, savoring a funny thing that one of my daughters says, or sitting in the sun for a bit.

Last year on days I didn't feel well, any small good thing seemed extra large. The world shrinks when you don't feel good - we all know this from times we've been sick. You notice the small kindnesses more when you're vulnerable.

There were some days when a walk around a couple of blocks was an achievement, and I noticed the flowers were beautiful. A friend would come over to spend time with me, and we'd sit on my patio, and I would listen as she would talk (holding up your end of a basic conversation can be exhausting when you're exhausted). These friends were lifesavers!

Even logging onto Words With Friends and seeing that six people had made their move and it was my turn, meant that there was something distracting and quick to do that made me feel connected to whomever I was playing. These games saved my sanity some days!

Before last year, I didn't pay attention to these kinds of small blessings very often. I didn't stop to really soak in something good that was happening. And that's one of so many ways that having had cancer has changed me and changed my life for the better.

The Upsides of Cancer

A few years ago a friend of ours successfully battled cancer and wrote a moving essay afterwards about the upsides. I read it then, and last year I asked for another copy so I could read it again.

I think it's safe to say that I've found most of the cliches about the experience of moving through illness to be true. I feel stronger, I appreciate and notice each individual day in a new way, I am less bothered by problems that used to seem large, and many of my relationships are stronger. I'm also less afraid and less risk averse.

I'm much more skilled at being mindful and I'm better educated about how to stay healthy.

I'm more sensitive to what people who deal with chronic health issues are going through and may need.

I've met some new people who are pretty amazing and inspiring.

In the four months since I've completed cancer treatment, I've been able to help three strangers who are new to cancer.

Next month I'm going to model in a fashion show/fundraising event that benefits women who are going through breast cancer treatment and need financial help. All the models are breast cancer survivors. 

I've finally reached a stage where a day will go by and I won't think about cancer once. That's a big milestone. I'm also mostly not bothered with anxiety about recurrence. It's there, but it doesn't take over.

Hair

Oh yes, the hair report.  Everyone wants to know about that!

Newsflash: it's growing! It's still blond and it's still short. I'm past the Rosemary's Baby stage and now have hair that's closer to the style of Charlize Theron at this year's Oscars.

It's thicker than hers and a little longer, and I haven't magically gotten 10 years younger or become a movie star, but other than that, I'm a dead ringer for Charlize.

 Another Cliche I Find is True

I have a lot less patience for busy work and doing things that I think are a big waste of time. I think this is because my ideas on time have shifted.

I used to live week in and week out, bouncing around from one obligation to the next with a vague idea that the time I had left on the planet stretched out sort of forever. No need to think about time's preciousness. I would lose track of goals, forget to have fun, not know where the time went, and take so much of what I had for granted. I think this is typical.

Now I want each and every day to count. Most days I feel a drive to pay attention to making the most of it. There are things I want to achieve, experiences I want to have, and places I want to go.

There are also quieter intentions I have around how I want to be in relationship with people and how I want to just be.

Hopefully I'll have 40+ more years to live this way.

So far my new regard and respect for time has meant that I take more deliberate actions, have more fun, and generally experience more "technicolor" in my life. Pretty great.

Many people my age don't have the opportunity to seriously consider their mortality, or don't take the opportunity even when it's offered. And I'm at a new and better place in my relationship with this inevitable reality because of my struggles over the past year.

There were lots of lemons last year, but now it's lemonade time.

Mavis Retires

Um, this isn't me. This is Mia Farrow.

After six months of loyal service, Mavis has retired to the upper shelf of my closet to contemplate what's next in her future.

Last month when I finished radiation treatment, I noticed three things: I was no longer bald, I was really tired of wearing a wig, and I felt a lot more relaxed about showing up in the world "as is". There was something about having cancer treatment behind me that made it pretty easy to leave Mavis at home.

Now my hair is a bit longer (although very short - think Annie Lennox, or Mia Farrow in Rosemary's Baby, and then make the bangs even shorter) and blond. It's sort of a sandy, strawberry blond I guess. Naturally my hair is white, and I wanted to try something different from my previous auburn color, so I decided to try going blond.

I'm getting used to the new look, and it cracks me up that even people who don't know me compliment me on my hair, like I cut it this way on purpose.

In the meantime, I've healed very well from radiation and am completely thrilled to be doing something else with my time other than heading to the medical center every day.

What Now

Now that I'm done with the Big Three (surgery, chemotherapy, radiation) I just have a couple of things to do, cancer-treatment wise: herceptin (an IV infusion every three weeks through this June) and tamoxifen (an oral medication I started a couple of weeks ago and will take for at least five years).

Herceptin doesn't bother me a bit, and it's a wonder drug, so I don't mind at all that there are 8+ infusions left. I'm assuming that when I'm done with it in June I'll get the chest port (aka alien tracking device) removed. I'm looking forward to that.

Tamoxifen is an estrogen suppressor and affects women differently. So far I haven't had problems with it. Hot flashes are the most common side effect, and there are various other possible effects that are similar to what women entering menopause naturally can go through. The serious side effects are rare, so I'm not going to worry about those.