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.

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.

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!

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.

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.

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!

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.

Hanging In There

I just wanted to let you know that I'm busy doing my "dealing with the first chemo thing" and am hanging in there.

The first few days were pretty easy, Saturday I had to lay low all day, and since then it's been up and down.

In a nutshell I've had to spend a lot of time experimenting with what kind of food intake works, and there have been a couple of minor side effects to respond to. It takes a lot of my attention and energy, and that's frustrating and kind of depressing.

Even though I knew I'd be required to pay close attention to what my body needs and respond to that (even if it means missing out on things I'd much rather be doing), in practice it takes some getting used to. It's taking me some time to just go with what is and let it be. So there have been fresh waves of general anxiety and grief these last few days, too. So much fun.

I'm doing my best to stay positive and keep up my strength - my two primary jobs. B. and the kids are taking care of all kinds of family life details.

Thanks all for your well wishes, your funny links, your surprise cookies, your dinners, your Words With Friends games, your friendship and support. Don't hesitate to be in touch, and if I don't get back to you right away, don't worry. It's just taking some time getting the hang of this.

Chemo Starts Monday, June 11

Decision Made

I finally made a decision about which of two chemo regimens I will go with.

This wasn't easy because the first oncologist favored one and the second favored the other. Both said I could pick either regimen. There's no study that shows that one is more effective than the other. It came down to a matter of opinion and which factors weighed more heavily in which oncologist's mind. It was up to me to select a regimen, and it was really hard to figure out how I was going to make that decision.

I went over and over my notes, I talked with B., with each of my parents, with a couple of other people. I slept on it for two nights. And then I made my decision. And I feel good about it.

This was a really strange and stressful situation because there was no right decision or wrong decision, yet obviously to me the stakes feel very high. I kept wanting there to be a right choice, a wrong choice, and some kind of guarantee.

Oh, and how about we throw in a free trip to Europe and a magic carpet, since I've now ventured into Fantasy Land.

Chemo Details

So I have my first chemo treatment on Monday morning. I'll have a total of six treatments, each three weeks apart. If I stay on schedule that puts my last treatment on September 24. Not that I've counted or anything.

I don't know what to expect about how I'll feel next week. I have to take steroids the day before and the day after the treatment to help combat fluid retention. Those I expect will amp me up a bit. I'll have anti-nausea medications to take. I'm pretty sure there will be some fatigue in the picture.

But rather than go through the extensive laundry list of possible side effects with you now, I'll just wait and see what happens. Have you ever checked the list of possible side effects on something innocuous, like a bottle of Advil? There's always something nasty on there, like severe stomach bleeding or seizures or shut down of major organs. Those things have never happened to me after taking the minor stuff, so I'm not going to memorize all the possible effects of the drugs that are entering my system next week. I'll just have to see how it goes and manage what comes my way.

How I'm Doing

I'm still so relieved to be in this phase of preventing recurrence rather than battling existing, known cancer, that starting the chemo process, while a huge bummer, is now something I just want to get through and be done with.

Also it still feels surreal, maybe because I don't know what to expect. I feel rather numb. I expect to feel nervous Sunday night and Monday.

Ways You Can Help

For the locals, there will be another round of dinner delivery opportunities. An email should be coming your way about this soon.

Here are other ideas for local folks:

Be in touch. Don't worry about bothering me - text or email if you don't want to call. Send a note. I love to hear from you. We can talk about me, but I really want to hear about you and your regular, everyday life.

If you're going for a walk, see if I want to come with. I'm supposed to get out every day and stay as active as possible. I'm also up for offers to have tea or just a visit.

If you or your children are friends with my kids, feel free to invite them along to something fun you're doing, or just to hang out, especially after school lets out for the summer. We'll be in town!

If you're friends with B., be in touch with him. Go out for a beer, a ride in his car, coffee - whatever. Being the spouse of a person going through chemo treatment is tough. I know he feels a lot of stress from all directions right now. He needs breaks and fun things to do and offers of specific help. He knows he can ask for help, but he (like me and pretty much everyone else we know) is not great at recognizing when he could use help or asking for it.

If you or your children like dogs, feel free to call or email with an offer to walk Caleb the Wonder Corgi anytime you want. Around the block is not too short. An off-leash park is not too long. He loves fetch in the yard, too. Come once, come ten times - whatever works. He's available!

If you're at a grocery store or drugstore nearby and you think of it, call and see if we need anything.

Drop anything by. Recently friends have brought flowers and cookies. Those are such day-brighteners!

And for anyone, local or not:

Be in touch!

Send me anything funny, amusing or distracting. Links to YouTube videos are good. A friend gave me Tina Fey's book Bossypants for my birthday last month (which you simply must read if you haven't already because it's hysterical). Any of your favorite TV shows that don't involve people dying of cancer or feature gritty violence that puts you into an existential torrent for days I definitely want to hear about. Any music you're listening to you'd recommend? I haven't downloaded any new music in a long time.

Play "Words With Friends" with me (it's a Scrabble app on your smartphone or on your computer through Facebook). This will be fun for you because I'm not one of those players who knows all the 2-letter words that no one has ever heard of, and if I get "chemo brain" I will be even easier to beat.

I probably will come up with more ideas as time goes on.

Healing, Oncology and Lessons from the Cereal Aisle

It's a good thing I have nothing else to do with my time than go to medical appointments. Otherwise imagine how boring my life would be.

It's been awhile, so I'll catch you up with the highlights.

Healing from Surgery

This continues to go well. I'm gaining more and more range of motion in my shoulder and have been back to a regular routine for a while now. I don't have the same energy I did before surgery, but it's coming along.

There are a couple of hiccups that are delaying full healing (one is an infection I'm taking antibiotics for and one is just kind of gross so I'll spare you). But those will be resolved by the end of the month.

What's Coming Up

I've been to four appointments this week (nurse visit, surgeon follow-up, physical therapy, and a consultation with Oncologist #1, Dr. N.) There's heaps more fun coming up. Here's a rundown:

May 24: Port placement

I'm going to have a port inserted into my upper chest so that my veins don't have to take all the poking and prodding I'll be having in the next year. Instead the chemo drugs, blood draws, and whatever else will be going in or coming out through the port. It'll be completely under the skin but the outline of it might be visible. I'll be sedated for this lovely procedure.

May 25 and 31: Various scans

They want to check my heart so they can see how strong it is. And I need a CT scan of the chest and abdomen and a bone scan.

June 1: Phone visit with Dr. N., to review results of scans.

June 4: Consultation with Oncologist #2, Dr. F., to hear what he has to say about the chemo regimens he recommends for me.

Soon after that: Chemo begins. 

Consultation with Oncologist #1

I learned a lot today and feel positive about my visit with Dr. N.

I could be in one of three groups, and there's no way to tell which group I'm in ahead of time (this goes for everyone, by the way).

Group #1 is people who have cancer removed (as I have) and then do not experience recurrence, even with no further treatment.

Group #2 is people who have cancer removed and need treatment to prevent recurrence.

Group #3 is people who have cancer removed, have treatment, and just don't have the biology (she used that word - not really sure how to explain it) to prevent recurrence.

So based on individual factors of my individual situation, and in case I'm not in Group #1, she recommends the best course of action for me as surgery (check that one off), chemo/herceptin (herceptin is the drug I get through the port every 3 weeks for a year that targets only bad cells), radiation, and tamoxifen.

She presented two different chemo options and told me which one is her first pick and why. But the second choice pick is a completely viable option, too. There's no data that categorically states that her first pick is better than her second pick - it's her opinion based on her experience. She believes that if I asked 10 oncologists, 6-7 of them would agree with her. I'll be seeing another oncologist June 4 to see what he says.

The regimens differ in terms of intervals and drugs. In general, an every 1 or 2 weeks regimen is going to be harder to take yet also gives the cancer cells the least opportunity to fight back. Every 3 weeks is easier to take but could be easier on the cancer cells.

Either way you slice it, I will be losing my hair. That's a given. (Eyebrows and eyelashes might be spared a bit, but the rest will be temporarily gone). More on that in another post.

Another key thing I learned is that the whole process is constantly monitored, evaluated and tweaked for the highest level of comfort and efficacy. My heart function, information about my platelets and all kinds of other things will be looked at frequently. There are a variety of anti-nausea drugs, a variety of this and that to try, and everyone's response is individual. There are a whole host of possible side effects, some of which I may experience and some of which I may not. We just have to see how it goes.

In general I was told to expect ups and downs.

How I'm Doing

Right now I'm really saturated with information and am tired of thinking about it. I haven't slept well the last few nights and am tired.

I'm also very hopeful and am still dedicated to finding positivity everywhere possible. I do this on my own and with the help of my friends and family. Even the lady at the front desk in oncology who spent 10 minutes with me telling me about how I could call on her for tea, crackers, a hug, a bed to lie down on, etc. helped.

I'm up and then I'm down. I can be totally distracted from this and enjoying my life and then really sad and angry about the whole thing. I think that's pretty typical.

What Helps

Hearing from you, funny stuff, seeing friends, meeting with clients (good distraction), family, sunny days, exercising.

What Doesn't Help

In case you were wondering, it doesn't really help to quiz me in the cereal aisle at the grocery store about how many cycles of chemo I'm going to need to go through and what my prognosis is. (This actually happened, and no it wasn't you - it was someone I know very casually who doesn't know about this blog).

It's natural that when we hear about something challenging we want to know the end of the story. So we ask these kinds of questions:

What's your prognosis?
Do you think you'll win the custody battle?
Is your company going to lay off your team? What will you do then?

Of course we want to jump right to the happy (or not so happy) ending. But what's most helpful for people is to be with them right where they are.

I know I've asked people who were in the midst of a struggle questions that were about satisfying my own curiosity. I meant well, but I wasn't attuned. I know better now.

I've come up with a basic line (that's polite) that I can use with people on the periphery who are being too nosy for my taste. (The rude version I can say in my head). I realized after the Cereal Aisle Incident that I have to be able to protect myself with such a line, because although it may seem like I can chat about this as if we were talking about a remodel or M's classes next year at high school, I really can't without some kind of mood recovery plan. And I don't always have the time for that.

As always, thank you so much for your continued positive thoughts, supportive cards, dinners and everything else great that you're sending my way. It all boosts my spirits!

Recovering Well

No big news - just letting you know that I'm recovering well and am feeling better and stronger each day.

Yesterday's big triumph was taking a shower. I'm doing exercises to regain range of motion in my right arm (that will take a while). I eat, I take pain pills, I take little walks, I read, I nap. It's a super exciting life.

B. and the girls have been extremely helpful, as has "The Village".  This means you! Thank you.

Lots of Gratitude

First off, thanks to very generous friends and family for signing up to bring us dinners after my surgery. The schedule is full! If you missed it, hey, maybe there will be more opportunities for that later on this spring/summer. I hope not. But I'll keep you posted here.

Well I'm at "T Minus Five Days" on the countdown towards the surgery. And really on the whole, considering everything, I'm doing very well. We don't need to count the mini meltdown I had last night after (against all recommendations!) I looked a few things up on the Internet. Bad move! What was I thinking? I'm not even going to tell you what I looked up. It was completely unhelpful.

So part of my Mini Meltdown Recovery today includes focusing on facts (not conjecture about the future), counting my blessings and talking with really positive people. It sounds so trite and hokey, but it all actually works. I've been doing this a lot during the last couple of months.

I've also been reflecting on just how incredibly fortunate I've been my entire life. I still am enormously fortunate. I've enjoyed an abundance of love, security and opportunity every step of the way. I've had many wins and few losses. This is remarkable to me, to be so lucky. I think it's unusual to be my age and to have had such consistently smooth sailing.

Of course like anyone I've had curve balls thrown at me, challenges to face, thorny problems to solve (or, much harder I think, problems that appear not to have a solution and remain messy) and disappointments.

But I know a number of people who've endured very difficult times and moved through those experiences in ways that inspire me. Many of these people are members of my family. They showed incredible strength, courage, endurance, and optimism. Now they are sources of wisdom for me, as are the memories I have of the special people I hold in my heart who have passed away.

The next several days hold a mixture of the routine (paying bills! meeting with a few clients! errands!) and some relaxing, social time. It's odd to know that change is a comin' and to be waiting (and waiting and waiting) for it. Next week this time I'll be in a completely different place.

I plan to post at least one more time before Monday.

April's Happenings

Whew! This is a long one. You might want to get a snack and settle in. No new medical news, just a little philosophy and an update on how The Village is helping me out. Oh, and there's some swearing, which somehow I've managed to avoid doing in this blog until now, even though in real life I swear like a goddamn sailor. (Sorry, E., my mother-in-law!)

I've had a good couple of weeks since I last posted.

Just living my life

Just as I had hoped, I'm enjoying having a "normal" April and am doing some fun things. I went to a women's retreat (which I helped organize) with 49 other women from my church this past weekend, and it was inspiring and restorative.

It was challenging too, at times, because it involved periods of silence and reflection, times when I couldn't distract myself from the range of feelings I'm having about the approaching surgery and whatever else is down the road. But experiencing those feelings was good for me and they were transitory. They didn't grip me in a choke hold of panic (that was February, and a lot of March).

B. and I are going away for the weekend on Friday, just us, which will be great. I can't remember the last time we did that. Thank you Mom, for making this possible!

I've seen some friends and have more of that planned in the next couple of weeks. I'm back at the gym regularly. I'm loving the sun, which has been out more and more. I'm wasting time playing a game on the computer which I've never done before, but oh well, why not. My client load is pretty light.

Incredible support

I met with a friend of a friend last week who had breast cancer several years ago and was just really inspiring to talk with. I'm guessing that our paths may not be very different. I think she's super cool, and she had a lot of great tips and resources to share.

Meeting her gave me more of an insider's view of what surgery and treatment could be like for me. I feel anxious yet also extremely supported. There is an incredible amount of information and support for women who are going through breast cancer. I think the main challenge will be discovering the right kind of support at the right time. But I don't think it's going to be hard.

Telling more people

Now that surgery is two weeks away, I'm telling more people about it. I still don't have any grand plan about whom to tell, when, how or why. To be honest, it's lousy news to deliver and I always feel like I stumble over it. I tend to decide in the moment whether it feels like a good thing to say and a good time to say it. I know it places a burden on the receiver of such information and can trigger memories, emotion, and projections of all kinds.

I also know there are people out there who even though they know they can't catch cancer from someone else, still shrink away from it. That makes me sad (although I haven't experienced feeling "shrunk from" yet.)

It's super strange to walk around (in my neighborhood, C.'s school, our church) and not know who knows and who doesn't. Because some people are spreading the word (which is fine) to people who aren't going to walk up to me and talk about it, either because they don't know me well, they don't want to talk about it or they don't want to bring something up that maybe I don't want to talk about. I understand all of this, yet it's also strange.

I don't like to stand out (unless it's for something trivial, like having the best chocolate chip cookies in town - which I don't!), and I don't particularly like knowing I'm being discussed, and of course having cancer involves both of those things to some degree.

Cancer is just a really crappy word

I was talking with B. the other day about the words that are used to describe people with cancer and the process of having cancer and trying to decide if any of them worked for me. Many of them do not.

For example, just take the word cancer. Ugh. Isn't it horrible? Such a dark invasion. Grasping tentacles. Not good.

I suppose that after a while hearing the word cancer won't give me a stab of adrenaline and dread, but I'm not there yet.

And here are some other words and phrases that are pretty charged and depressing:

• Disease
• Being "sick" with cancer
• Battling cancer
• Cancer patient

Even though I'd say three out of the four apply to me (I really don't feel sick, so I'm not going to own that one!) I don't use those phrases to define myself.

Identity

And maybe that's what I've been able to work through a bit here during April, the idea that having breast cancer is part of what's going on for me but isn't my entire life. In January, February and March it was pretty much all-consuming. The shock of it and the uncertainty just hoarded an enormous percentage of my mental and emotional energy.

Of course I could be in that space again this summer, but for now, I'm able to switch my focus between all the different areas of my life much more nimbly. And this feels good.

Now when I'm at a medical appointment I sometimes say to myself, "Shit! I'm a fucking cancer patient! No goddamn way!" I mean, it's still surreal. Before January, I was at the doctor infrequently and had the most boring medical history ever. I was your basic healthy 44 year-old who always checked "no" in all of those boxes on the medical history forms. Seasonal allergies was about as exciting as it got. Even my pregnancies and deliveries were medically basic and boring.

In fact, I still think of myself as healthy, it's just that now I'm temporarily housing these pesky cells that need to get outta here. I really don't think of myself as sick or diseased.

Maybe that means I'm in Denial Town, but it works for me. I'm still going to face this head-on - I'm certainly taking it plenty seriously - so I think it's OK to continue thinking of myself as a healthy person.

Help from The Village

B. and I have had many people ask how they can help us out after my surgery. Thank you so much!

My dear friend and sister-in-law S., (all three sisters-in-law are S., so this is the S. who's married to B's middle brother) has kindly offered to organize some dinner drop-offs. So if you live in our city you'll be hearing more about this on this blog and possibly in your email inbox.

In the meantime, thank you again for keeping in touch with emails, cards, etc. I love hearing from you.

I feel very lucky, supported, and strong.

Next Steps

Dr. C called me Thursday and let me know that the radiologist who read my MRI doesn't believe that they'll be able to see either of the two "mystery areas" via ultrasound, so I don't have an ultrasound/biopsy appointment February 29 after all.

Instead I'll have MRI-guided biopsies, which I hope to have as soon as possible. Oddly even though I live in a major city, this procedure takes place at my healthcare company's location 30 miles away. So it's going to be quite the fun field trip.

I also got a referral to consult with a plastic surgeon because I want to know more about reconstruction as I make surgery decisions. 

Over the last week I've gradually started feeling less upset all the time. I know this is an up and down thing and I'm grateful for getting a break from extreme anxiety. I've talked with a couple of friends and have learned that my worst-case-scenario thinking about what chemo would be like is not necessarily accurate, and that helped quite a bit.

I'm doing whatever I can think of to think positive, do things that feel good, and talk with supportive people. I'm highly suggestible right now and the littlest comment can either make me feel a lot better or send me into a tailspin. So I really appreciate that no one is telling me about their friend's horrendous breast cancer experience. :-)

  

Although all this waiting around is a drag in a many ways, I'm getting the opportunity to think about what my priorities are and about what I'm willing and not willing to risk. I don't know what exactly will be happening and what options I'll have, but I'm starting to trust that with more information I'll make decisions that are right for me.

I so appreciate everyone's well wishes, emails, phone calls, comments on the blog, cards, chocolate, magazines and other thoughtful things. You may think that whatever you're doing to support me (even if it's just thinking good thoughts) is small, but it actually feels very, very big.

The Kindness of Teenage Girls

Last Wednesday, the day I got "the call" with "the news", was a pretty awful day.

Although I was expecting this news, I still felt shocked, scared and grief-stricken. However, that day I also felt strongly supported, cared for and loved.

A powerful example:

M. texted some of her friends about it after school, just after we told her.

A few hours later, the doorbell rang. M., C., and I answered it together. Standing on our porch were three of M.'s friends, holding this plate of homemade cupcakes. They gave M. and C. each a pink "emergency chocolate" bar and a pink ribbon. They were wearing pink ribbons on their wrists to support us.

The three of us were stunned and amazed by this incredibly caring gesture. M. had never experienced anything like it, and she was so pleased.

As I emailed people who knew about the biopsy with the news of my diagnosis, I felt the outpouring of support come back to me. I can't emphasize enough what a huge difference this made to me. I felt stronger and less vulnerable, and far less alone.

If we could all feel incredibly supported every day, whether we've just heard bad news or not, the world would be an entirely different place.