New Plan Begins December 29

An angel from my childhood

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

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

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

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

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

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

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

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

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

CT Scan Results

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

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

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

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

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

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

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

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

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

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

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

Doing Well

Just a quick update to let you know that I'm doing well.

I've been on the same treatment plan since my last post and expect to be on it a while longer. I feel good most of the time and am living my "normal" life.

I'll have a CT scan in December to check on things. My white blood count has been decreasing with each treatment (an expected side effect), and if it goes below a certain level I'll need to take a break from chemotherapy to allow it to go up.

Since I tested negative in 2012 for the BRCA1 and BRCA2 gene mutations, four additional genetic tests have been discovered that can show a higher risk of getting breast cancer. I just got my blood drawn to be tested for those and will learn in about three weeks whether I have any of those gene mutations.

If I'm negative, then my daughters will be negative for them too. That will be six genes they don't have to be concerned about.

If I'm positive for any of them, I'll learn what the implications are, and M and C could opt starting at age 18 to be tested for them. If they are positive, it will affect the decisions they make with their doctors in the future regarding what cancer screenings they receive at what ages.

I'm amazed by the advances in the cancer and genetics fields. There's such a long way to go, but there's also so much progress every year.

Good News

What a nice surprise - the CT scan I had Tuesday showed that the chemo is still working (contrary to what the tumor markers were telling us). The liver mets are still shrinking, and the other areas are stable.

So I get to stay on Navelbine + Herceptin for a while longer. I go in on Monday to start another round. A round is three weeks long - I have an infusion two Mondays in a row and am off the third Monday.

I'll still meet with the other oncologist next Thursday to talk about clinical trials and her take on standard treatments that are still available to me.

I've got several fun days ahead, and knowing I can stay with the status quo will make them even more relaxing!

The Only Thing Constant is Change

Well, it's almost time to switch to a new chemo plan.

I thought I'd write a quick update while in a waiting room because I'm so over Ladies Home Journal.

The labs I had done September 2 showed the tumor marker levels are not headed in the right direction. So Dr. N has concluded that the Navelbine + Herceptin has stopped being effective.

Here's what's coming up:

September 16 CT scan to see what's happening.

September 19 visit with Dr. N to talk about treatment options.

September 25 consultation with the oncologist at my area's major cancer research center (whom I met in March) to hear her ideas on standard treatments and clinical trials.

I'll probably start the new plan the last week of September.

I still feel good physically and am living my normal life. I did hit the pause button a couple of weeks ago on accepting new clients and am giving myself more breathing room in my schedule for taking care of myself (exercise, family, friends).

A lot of the time I'm in good spirits, and I'm leaning on family and friends on the harder days. 

I've got some fun social things going on in the near future, including a weekend with my college BFFs. 

The weather has been glorious for months, and I've loved every minute of it! 

Mixed Results

I do love a dahlia

I've been so busy living my regular life that I haven't written in a while. 

There hasn't been much to report lately. The navelbine chemo treatment I started a couple of months ago has been pretty easy and life's been smooth. I've been busy with work, and there's plenty to do at home and with friends this summer.

CT Scan

I had a CT scan to check on things yesterday, and the results are mixed.

The good news: Several of the liver mets are smaller. Yay! I haven't had this kind of good news since November.

The not-so-good news: The cancerous spots in my bones are larger and there are more of them. I don't even have a specific number. Let's call it several to many. They are in different places in my pelvis, spine and one in a femur.

The mystery: There's a spot in my lung that could be cancer but it's too small to tell. It's larger than it was in the last scan.

I don't have any pain. I'm very grateful for that. So all in all, it could be worse.

And it could be better.

The Plan

I will stay on this navelbine treatment for another two rounds (about six weeks) and then have another CT scan. Hopefully the liver mets will still be shrinking.

My oncologist says that especially as cancer spreads to other areas it may not all be responsive to the same treatment. She decided since it's very important to keep the liver mets under control, and that the navelbine has been doing that, we'll continue with it even though it is not shrinking the bone mets.

At the dahlia garden at my favorite park. You know, the one with the Conservatory!

How I'm Doing

Scan and results days are never fun ones. So my week so far has not been the greatest. But overall, I'm doing very well. The past nine months are some of the best in my life, and they've also been some of the hardest. Funny how it works that way.

I haven't been asking for much help lately for several reasons. One is that I've been feeling good most of the time, so asking for help feels strange. Another is that as long as I don't ask for help I can tell myself how well I'm doing and then that's not so depressing. And yet another is that even with the Helping Hands website up to make it easy, I still don't find it easy. I'll work on that.

In the meantime, we're going on a vacation in about 10 days to San Francisco, and I'm really looking forward to that. We're going to spend Labor Day weekend on a nearby island with old friends,  I've got a weekend lined up in September with my two BFFs from college, and time with sisters-in-law here right after that. It's always good to have fun stuff on the calendar!

I hope you are having a wonderful summer, and I'll keep you posted.

New Chemo Again Today

Time for navelbine today, the lastest (and greatest? I'm ready for something like that) chemo drug I can cross off my bucket list. Were I to have a bucket list of chemo drugs, that is, instead of European countries or types of chocoate dessert...

Navelbine is given through my chest port at the medical center, and it's a "push", meaning the nurse spends about 6 minutes holding the medicine in a syringe and slowly pushing it into my line. Easy peasy. I also had a 30 minute Herceptin infusion today, so it was a much shorter and less eventful trip to the medical center than 3 weeks ago.

Some people have asked me about the allergic reaction to Doxil I had. Immediately I had trouble breathing, my face swelled up and I had back pain. The nurses came right away, and the benadryl and pain medication kicked in and I was back to normal in a few minutes (though loopy as hell for the rest of the day).

I forgot to write with the results of my bone scan. Thankfully that didn't turn up any new surprises. So I still "just" have the two spots of cancer in my spine and left hip that the abdominal CT scan turned up last month.

I have no pain or side effects from the cancer - all the side effects I've experienced so far are just from the treatments. And right now I don't have any side effects from the treatments besides maybe a little fatigue (who knows?) So I'm in a good place.

Assuming I tolerate this plan OK, my oncologist thinks we'll do another scan after three rounds of it (that's in about 8-9 weeks).

In the meantime I've got plenty else to do and think about. Work has picked up more lately, the girls have dance performance dress rehearsals and shows this week, Father's Day is coming up and C's 13th birthday is the 20th, the day after the last day of school.

Yet Another New Plan

Well, since Doxil is something I'm severely allergic to, we're leaving it behind. Although I'm bummed to take off the table a drug that could be effective against the cancer, I do highly value breathing. So we're switching plans.

It will be Navelbine + Herceptin, beginning June 9. Those are also infusions at the medical center, as opposed to pills at home.

I developed a fever in the middle of the night last night (not bad but at the level where I need to go in to see if I have an infection). At 5:30 this morning B took me in to Urgent Care and long story short, I don't have an infection. That took 2 1/2 hours and a bunch of tests to conclude. The fever is probably from one or both of the drugs I received yesterday. 

So it's been kind of an exhausting 24 hours, and I'm taking it totally easy today. 

There are various appointments ahead - a bone scan May 27 to get the whole bone story, a heart scan (aka MUGA) on June 6, which I've had about 8 times before and is standard when one is on Herceptin, and another fun "Menopause Now" injection at the end of this month. (That really wasn't too bad but I will spare you some of the weird details about it).

I wanted to get this update out, and now I will go on to something completely unrelated to medical treatments, like a walk, my book, Wordament (a Boggle-like game on my phone), and maybe some bad TV later tonight!

New Chemo Today

Quick update using my phone app to write this.

I was scheduled for a new chemo regimen today - herceptin (have had this before) plus Doxil (aka liposomal doxorubicin). Earlier I posted that I was going to do Navelbine, but my doctor and I decided Friday to go with Doxil first.

I had a severe allergic reaction to the Doxil so that was abruptly discontinued. Thanks to Benadryl and a pain med the reaction was quickly managed, and I'm totally fine.

That was really freaky and not fun. But the nurses were completely on top of it and an oncologist came over right away, so I was in good hands.

Tomorrow I'll have an appointment with my oncologist to see what the next step is.

I had my first Zometa infusion today, and that will be every 4 weeks. This is a medication that prevents calcium loss and keeps bones stronger. Ironically it can cause bone, joint and muscle pain. 

On Saturday I began taking Femara, a medication that suppresses estrogen. That goes along with my monthly "hey you're now post-menopausal" injections. So far I've done very well with those - no big deal.

So that's the latest from Great Aunt Edna, who has trapped you again at the buffet table to go on about her health problems!

I had a wonderful weekend with my best friends from college and a great family dinner last night at B's brother and sister-in-law's house. The weather is good, I've got a good book going, and am free to go take a nap now.

Time for a New Plan

Just when I was getting used to Tykerb and Xeloda, I need to switch to another plan.

I learned today that the CT scan shows the cancer is getting bigger in the liver, and unfortunately there are now two spots on my spinal column in the bone. They are very small and are not causing me any pain. But of course this is not the news I wanted to hear.

I'm to go off the current chemo pills starting now, and next Friday, May 16 I'm going to go on Herceptin (which I've had before and is easy) and Navelbine, which is supposed to be generally well tolerated. I'll have infusions weekly for two weeks, then off for a week. Looks probable that I'll keep my hair.

I'll also get an infusion of Zometa every three weeks, which is a support medication to decrease complications caused by bone metastasis.

So even though Tykerb and Xeloda didn't work for me, it doesn't mean that Herceptin and Navelbine won't either. Everyone is different, so we just try different plans and see what works. There are more options available after this, too.

Now on to the weekend, Mother's Day, my birthday, and all that good stuff.

Healing the Whole Self

At the Conservatory

I've got a lot to say today, but let's start with the facts.
  

Medical Update

I'm in the middle of the 3rd round of the "new" chemo plan, and I feel pretty good most of the time. There isn't a pattern of symptoms and side effects that is consistent from one round to the next, but I feel good that I'm tolerating this well and no longer feel anxious wondering if it's going to be really awful. It's so far very doable for me, although more taxing than the last regimen I was on from late September - mid-March. Each round is three weeks long.

I developed a problem with my feet (due to one of the chemo medications) in the middle of the 2nd round, so discontinued that drug for a while until my feet got back to normal. I went back on the drug at the start of the 3rd round, and we'll play around with the dosage if I develop that problem again.

This Friday, May 9 I have an abdominal CT scan to check on my liver and see what's going on. This is a standard scan that has been planned for a while. Of course I'm hoping there will be some positive progress since the last scan. I'm not sure if I'll have results later that day or on Monday.

The last tumor marker checks were done on April 25 (there are two that are checked in my case), and one was unchanged since the last check and the other one was elevated. There's no way to interpret what's really going on from those checks - the scan will give us the key information.

Last week I had the first of however many monthly injections I'm going to have of a drug called Zoladex (where DO they come up with these names?) which will put me in "medical" menopause. We're doing this so that I can take yet another drug, an estrogen suppressor for post-menopausal women. Since estrogen is a fuel for this cancer, we're gong to cut off the supply. (I was on tamoxifen last year, an estrogen suppressor for pre-menopausal women, but that was not effective for me). So far I'm doing fine with the Zoladex. Hot flashes, mood swings, etc. are common with this drug, so we'll see how it goes.

Wow, after typing all that I feel like one of those old ladies who has trapped you at a family reunion and is going on and on about all her ailments. But I hear from many of you that you're interested to know what's going on, so there you go!

Lilacs from Our Yard

Healing

Thankfully there's a lot more going on in my life than going to oncology and scan appointments. I'm still working part-time, I drive the kids around, we went to the Oregon Coast for a few days during spring break, I see friends, do dishes, walk the dog and everything else that people do just living their lives.

However, healing and staying healthy and strong do take up a chunk of my time and attention. As B put it a few weeks ago to me, healing is one of my jobs. I am still working on giving it the priority attention it deserves daily, but I'm doing a lot to support my immune system all the same.

Just spending time thinking about other things other than my health is a very healing experience, as is being with and helping other people.

I haven't written much about all of the complementary care that I'm getting, but it's a huge part of my experience. I want to share a little bit about it because I've learned a lot over the last couple of years about what's available and what's helpful, and you might know someone who could benefit from some of these disciplines and practices (they don't have to have cancer).

Acupuncture

I've been receiving acupuncture on a very regular basis since I went through the first chemo in the summer of 2012, and I am big believer in its power and efficacy. In a nutshell it helps my entire system have the energy it needs. The practitioner I see is absolutely wonderful, and it helps body, mind and spirit.

There are different styles of acupuncture - I happen to go to someone trained in the "Classical Five Element" style.

At the Conservatory

Naturopathic Oncology

Living in the Pacific Northwest, there is no shortage of integrative/alternative healthcare. Some of it is quite woo-woo (which I am not opposed to - whatever doesn't hurt might help, who knows) and some of it is quite grounded in science that traditional medicine has accepted or is accepting more and more.

I see a naturopathic oncologist periodically who is familiar with all of the traditional cancer treatments and recommends things I can do and supplements I can take that will support my immune system. The body is incredible at healing itself, but ironically chemotherapy takes a whack at the immune system as it destroys cancer cells. So I need some extra support.

Counseling

I've found seeing a therapist to be essential to getting through this experience without going completely insane. 

Yep, Conservatory Again

Mindfulness Meditation

Another sanity saver. I can't say enough about the effectiveness of mindfulness practices, especially meditation. If you have a lot of stress, pain, anxiety or chronic illness, or just happen to be alive, mindfulness can help you get through it a lot easier.

I'm taking a class on Mindfulness-Based Stress Reduction (MBSR), which is an 8-week program developed by Dr. Jon Kabat-Zinn in the 80's. It's taught in hospitals, clinics and other settings across the country.

In this same vein is guided imagery. I listen to guided imagery on my iPod many nights to help me get to sleep and in the middle of the night if I wake up and my mind is racing. Basically it gives my mind something to focus on that is relaxing and helps my body to relax as well.

There are many CDs/digital downloads available to choose from. Note from experience: I've found it's good to get a preview of the person's voice before you buy!  

Qi Gong and Tai Chi

I'm fortunate to live in a city that not only has state-of-the-art healthcare within 20 minutes of my house (which I have access to because I'm fortunate to have health insurance) but also many free programs for cancer patients and their families through organizations such as Gilda's Club (as in Gilda Radner) and Cancer Lifeline (which is an organization just in my city).

One of the free classes I've taken is on qi gong and tai chi, which are both mindfulness practices and light exercise. Like acupuncture, they've been around for thousands of years. There are many different forms, and the forms I'm learning are medical/meditative rather than martial.

I could go on and on about how beneficial I find these practices to be and how much I've learned about the body and the mind by attending the classes and practicing at home. They're not just for elderly Chinese in the park!

Oregon Coast

Massage and Physical Therapy

I sought physical therapy after my surgery two years ago to help with some range of motion and scar tissue stuff, and it was also helpful for that after I completed radiation. Physical therapists understand how connected everything is in the body in a way that few practitioners I have visited seem to do.

Massage feels good. So sometimes I get a massage. I'm sure it's got a wealth of actual health benefits, but even if it doesn't, I don't care. And my visits are partially covered by insurance.

Hypnotherapy/Suggestion Therapy

I've dabbled with this, and found it useful. If you want to know more, just contact me.

Energy Work, EFT,  and Other Things Off the Beaten Path

I've also dabbled a bit in healing modalities that are more "out there" and am happy to talk with any of you about them if you want to know more.

Books

I like to read books to gather information. Sometimes I can overdo it and overwhelm myself with other people's ideas and kind of lose my own way. But I've found some books that have really helped me with making my way through having a chronic illness. One of the best is Jon Kabat-Zinn's Full Catastrophe Living. That's where I heard about mindfulness-based stress reduction.

Nico Having a Stressful Day

 The Basics

So many other things are helping me heal and thrive. Beauty, nature, music, reading, kids, movies. Just having a good time. Relaxing, hugging people, meeting friends for coffee or a book group. Ridiculously cute dog videos on YouTube that people send me. A date with  B. Celebrating birthdays and other milestones. Having the cat snuggle with me. Road trips, the beach, planning fun things ahead. Inspiring messages and people at my church. Walking three blocks from my house to an incredible city view by the lake. Watching M play water polo or watching C dance. I have an abundance of wonderful in my life.

At the heart of healing are the basic essentials - enough rest, good food, regular exercise - and most especially, love. I am surrounded by love daily.

Even at my low points of feeling afraid, anxious. lonely, isolated - those human experiences that are so challenging - I know that I am surrounded by the love of family and friends, near and far. The acts of love - giving, receiving, caring, listening, sharing, holding, accepting, witnessing, supporting - are incredibly healing and give me the strength to push on and savor all the good that is life.

Quick Update

I've been on the new chemo program for a little over a week, and it's going alright. I haven't experienced serious side effects or anything too difficult.

I'm getting in the routine of taking the three sets of pills when and how I'm supposed to (some are before a meal, after a meal, etc.) Of course I've got an app for that.

I don't feel in full swing, but I didn't really expect I would at this point. One day at a time.

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.