Next Up, Chemo

So, chemotherapy it is. After doing a lot of my own research, I went to see the oncologist today determined that no matter what he recommended, the decision was mine to make. I knew that if my cancer recurred later, I wouldn't want to look back and regret not having done everything I could to prevent it. But I also knew that if I agreed to chemotherapy, I wanted to be confident that I had asked all my questions and received satisfactory answers. I had it settled in my own mind that I wouldn't hesitate to seek a second opinion if I felt the need to. And of course I had prayed, and asked friends and family to pray, that I would be able to make the wisest and best decision.

I didn't want to lose my hair or spend several months suffering miserable side effects, but these were not good enough reasons to refuse chemo. In fact, nothing temporary or cosmetic was a good reason to decline chemotherapy. What I did want to be sure of was that I wasn't risking other long term medical problems that might potentially outweigh the long term benefits of reducing the risk of my cancer recurring. 

In particular, I was concerned about the risk of damage to my heart and I learned which two chemo drugs carry that risk. I discussed all this with Rick and we were of one mind when we went to the oncologist together armed with a list of questions.

I think we had very good respectful communication with the oncologist. He seemed to understand that we weren't going to say yes to chemotherapy just because he recommended it. He answered all our questions and gave us copies of my pathology reports, surgery notes, Oncotype DX test results and information on the chemo drugs with their risks and side effects. In the end, we were convinced, and having been convinced, saw no need to delay.

Some of the pertinent facts, which won't mean much to anyone who doesn't have experience with breast cancer: my tumor was 3.3 cm., invasive, strongly estrogen receptor positive and moderately progesterone receptor positive. My Oncotype DX number was 21. My cancer turned out to be Stage 2A, Grade 2. The fact that at the age of 57, I am still not post-menopausal was another factor.

Of the two drugs that can cause heart problems, I clearly won't need one of them, because it is only used for cancers that are HER2 (Human Endocrine Receptor) positive and mine was not. Maybe the doctor decided not to recommend the other one because he knew it would be a hard sell, although he probably figured that I didn't necessary need that one either. 

My chemo will be administered in four cycles, once every three weeks. After that twelve weeks, if I have tolerated it well enough, I'll probably have two more cycles, so that would be another six weeks for a maximum total of 18 weeks. It will administered through a medi-port that will be surgically implanted under the skin in my chest. Tomorrow I'll talk to my surgeon's office and get that scheduled. Once that's been done, I'll have my first treatment, probably as early as next week.

Since I've had a week to consider the possibility of chemotherapy, I already took some steps that I figured wouldn't be wasted in any case. One was simply vain. I had permanent eyebrows tattooed in place. I've considered this for a long time, since I over-plucked and decimated my eyebrows earlier in life anyway.  I've just never felt justified in doing this before, but now I did and am pleased with the outcome. (Yes I will lose my hair, all of it.) 

I also called the dentist and had them move up my appointment to get my teeth cleaned. That's not something you want to do during chemo, when there is a greater risk of infection. 

Today after leaving the oncologist's office, I called my sweet hairdresser who worked me in to go get my hair cut very short tomorrow. I expect to lose my hair within two to three weeks of my first treatment.

 I had already checked to see if my medical insurance would cover the cost of a wig. Some do, but mine doesn't. I wasn't too disappointed, because I can't really see myself wearing one, but who knows? I may change my mind about that. For now, I've found an online source of hats that I think I'll like and that are designed to cover hair loss. Ordinary hats and caps don't cover the whole hairline, or former hairline, I guess I should say. I've never been into scarves much, although I think they look great on other people.

I will still be having radiation treatments, but not until after I've completed chemotherapy.

I expect to have a good cry anytime now.

OK, So Maybe I Was Overly Optomistic

Today I had my two week followup with my surgeon and realized that I had probably made some overly optimistic assumptions regarding the probability of needing chemotherapy. I had known that if the cancer had spread to my lymph nodes, chemo would probably be a given. No one told me that clear lymph nodes meant no chemo; I think I jumped to that conclusion on my own.

I have healed well from my surgery, but I learned today that the size of my tumor, at a little over 3 centimeters, means that my cancer was stage two. Before surgery, my MRI had shown that the tumor was larger than the mammograms and ultrasound had indicated. This is still considered early, but it does cross the line where chemotherapy is often recommended, so my surgeon is referring me to an oncologist to see if I'll need chemotherapy before proceeding with radiation treatments. That's a decision that will be made with the oncologist, but the surgeon thinks it's a definite possibility. 

My surgeon says that my age is a factor in this. If I were twenty years older, chemo wouldn't be considered, but at fifty-seven, I presumably have more years ahead of me and thus more time in which the cancer could recur. Also, at fifty-seven, I'd be able to tolerate chemo better than I would at seventy-seven. It was interesting that he chose the age of seventy-seven for comparison, because that's how old my mom was when she died of ALS.

I have often thought about how different a breast cancer diagnosis is from an ALS diagnosis. 

When my mom was diagnosed with ALS, the hardest thing to bear was the knowledge that medically there was nothing that could be done. On average, patients die within three years of diagnosis with ALS. Oh, there was one medication that for some patients extended life by a few months, but also had potential to decrease the quality of life. It was very expensive and made my mom sick, so she didn't continue with it.

When you are diagnosed with breast cancer, your head swims with possibilities: mastectomy, lumpectomy, chemotherapy, radiation treatments, hormone therapy. None of these prospects are pleasant, but they are all treatment options that for most women, have the potential to cure their cancer. 

For now, I'll try to refrain from assuming anything more about chemo and wait for my consultation with the oncologist next week.

Of course sooner or later, I and everyone I know is going to die of something. Having placed my faith in Christ, I am not afraid to die and neither was my mom. I'm not especially brave in the face of pain or suffering, though, and I confess I really like predictability. 

My breast cancer journey just got a little less predictable than I had assumed it was, but that does give me a new opportunity to grow in my faith. 

With a Little Help From My Friends

I've mentioned in several of my breast cancer related posts that I have a few friends who've been through breast cancer. These women have given me inspiration and courage and I'm so grateful for them all.

Kandi died of metastatic breast cancer about a year and half ago. She went to my church and I had quite a few conversations with her during her illness. One thing I remember is that she always talked more about her kids than her cancer.  She must have been in her early forties, if that old, when she was diagnosed and her three children were in elementary and junior high school. From the beginning, her cancer was aggressive. She endured surgery, radiation and multiple rounds of chemotherapy. Her battle with the disease was long and arduous and bravely fought. She lived long enough to see her children grow up, but not long enough to see her first grandchild, who her youngest daughter is expecting now. We have more contact with Kandi's son than with the rest of her family now. He was with her when she died at home and he misses her terribly. Remembering Kandi helps me not to take my blessings for granted. She faced her battle with courageous faith and grace and I have things so much easier than she did in so many ways.

I got to know Sue about fifteen years ago and, sadly, have lost contact with her now. Her husband is military and they moved a lot. Sue was also diagnosed with an aggressive breast cancer while her two children were in elementary school. She went through mastectomy and chemotherapy. The first time I participated in the Race for the Cure, it was with Sue.

My friend, Gloria, like me, was diagnosed because of a mammogram, when she had no reason to suspect she had breast cancer. She is considered a long term survivor now, but suffers from lymphodema due to the loss of so many lymph nodes. My second Race for the Cure was with Gloria and both of our husbands. They came down from Dallas to participate in the San Antonio event. Gloria is really into breast cancer awareness and I respect that. She likes to experience the Race for the Cure in as many different cities as she can and she collects pink ribbon jewelry and mementos.

My friend, Jennifer, is the first person I called outside of my family after my diagnosis and the first to visit me after surgery. She is a few years younger than me and about eleven years ago she also had lumpectomy followed by radiation. At the time she was homeschooling her two sons who were in their early teens. She was fine for a decade and then last year was diagnosed with a different type of breast cancer, Paget disease, in the same breast. This time she had a mastectomy and reconstruction, with a lot of difficult complications in the process. It was a long ordeal, but she's doing well now. Jennifer has been a wonderful source of encouragement, information and perspective for me. My surgeon was the same one who performed her lumpectomy eleven years ago.

Debbie is another church friend from years ago who now lives in another state. She is also a nurse who has had lumpectomy, followed by radiation and is now taking Tamoxifen, which is the same three stage course of treatment I'm having. She contacted me after hearing about my diagnosis and has been great about answering questions I didn't know enough to ask yet. With her nurse's perspective and great sense of humor, she has helped me to be better prepared every step of way and has given me some good laughs in the process. 

Then there are Cherry and Marcia, also old friends who now live in other states and who've contacted me through Facebook to let me know about their experiences with breast cancer and to give me encouragement.

At times it seems that American culture is over saturated with "breast cancer awareness," but there's no substitute for personal connections with friends who are generous enough to talk openly and in helpful detail about their own experiences. We all  go through trials and tribulations in life and most of us will have opportunities to use those experiences to help others. I'm grateful to be the recipient of this kind of help and hope to pay it forward when I have those same opportunities. It is estimated that one in eight American women will have breast cancer in her lifetime. This is one reason I've chosen to talk openly about my breast cancer in this blog. 

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Ob-La-Di, Ob-La-Da

It's hard to believe it's been eleven days since my surgery. I do think I needed the two weeks off to rest and heal, but it's been wonderful to have an excuse to take afternoon naps, sleep late in the mornings, visit with both of my daughters and spend hours reading and watching the first two and half seasons of Downton Abbey.

Erika will be here for one more full day and then fly back to her home and family in Des Moines Tuesday. Later that afternoon, I'll have my followup with my surgeon and then Wednesday, I'll return to work.

I feel like I'm done with the first phase of this breast cancer experience, which included diagnosis and surgery. In a few weeks I'll begin the second phase: radiation treatments. (Edit added 2 months later: little did I know when I posted this that Phase Two would be chemotherapy.)

Unfortunately that will involve having to deal with the insurance company for a new FMLA claim, this one, "intermittent" to ensure that my absences for radiation treatments will be "job protected." I'm hoping and praying that this one will go as smoothly as the last one should have.

We're facing the fact that our little lost cat may not come home and hoping that she hasn't suffered, wherever she is. She is micro-chipped, so we haven't given up all hope of getting her back. Every morning I get an email with the newest listings and photos of cats that have been brought into the city shelter.

I've learned since my surgery that it's not uncommon to feel very emotional upon awakening from general anesthesia. In my case, when I awoke, I  began crying about losing Sasha. I suppose recovery room nurses are used to that kind of thing and might not have found it strange when I told them I was fine, but was crying because my cat was lost. I still miss her, but truth be told, my husband and son probably miss her more, since she spent more time with them. And, of course, with another cat and the three dogs in the house, I haven't lacked for animal companionship.

 

Our other cat, Luna, is more closely bonded with me, although I think Erika might have replaced me as her favorite person in the world this week. She liked Erika and Kelly both, but since Kelly is allergic, she wasn't able to return Luna's affection. Luna liked Erika from the start, but then Erika pulled out her knitting and Luna was smitten. I think she's going to be pretty disappointed when Erika leaves.







I'm sure going to miss Erika too and we'll make the most of the rest of her time with us, but she'll be ready to get back to her husband and children. And I guess I'll be ready to get back to life as usual, at least until I start Phase Two.

Looking Forward, Looking Back

Here at our house, we didn't exactly ease into the new year. As we entered 2013, we already had our dog, Zoe's orthopedic surgery date on our January calendar, as well as Rick's consultation with a surgeon for hernia repair, and we were waiting for results of a breast biopsy I'd had two days after Christmas. 

I got my breast cancer diagnosis on January 2, Rick had his surgery on January 11 and we took Zoe for hers on January 16.

Zoe the day after her "femoral head ostectectomy"

On January 24, one of our cats, who we adopted from the shelter a year ago, went missing. We've plastered the neighborhood with flyers, posted her picture on lost pet websites and contacted the shelters, but still no sign of Sasha.
 

Last week, which was the last week of January, Rick had his followup with his surgeon on Tuesday and got a good report after two weeks of trying to remember not to lift anything over ten pounds and laying off running, which was making him stir crazy.

The next day, Wednesday, I had lumpectomy surgery. 

Friday, Rick and our son, Paul, took Zoe for her followup and to get her 21 surgical staples removed. She is doing well, but still needs a lot of rehab, mostly in the form of daily walks. It will probably be another 5-6 weeks before she's fully recovered and we can consider surgery on her other hip.

Also on Friday, I got a call with the best news possible from my pathology report. The margins of tissue around my tumor were free of cancer, as were my lymph nodes. It was such a relief to know I wouldn't be going back for a second surgery.
 

Me with Kelly and my dad on Saturday after my surgery

Our daughter, Kelly, has come and gone. We had a wonderful weekend with her and look forward to our younger daughter, Erika, arriving late tomorrow night from Iowa. 

I've also enjoyed visits from my dad and from my friend, Jennifer, a breast cancer survivor twice over.

It was wonderful to go to church yesterday to worship the Lord with dear friends, who've been praying for me.

We're having gorgeous weather, perfect for taking Zoe out for walks and for Rick to gradually resume running.

I am driving again and going on short outings and errands, resting a lot, and using over the counter ibuprofen and acetaminophen as needed for pain. I have prescription pain medication, but haven't taken that, or felt I needed to, since my first night home.

Next Tuesday I'll have my two week followup with my surgeon where I expect to get more detail from the pathology report and a referral to a radiology oncologist. I plan to return to work Wednesday of next week, so my appointment with the oncologist will be sometime after that. 

I can't start radiation treatments until I'm completely healed from surgery, which probably won't be before the end of February. I think I'll most likely have radiation treatments five days a week for five to seven weeks. At some point, probably after radiation is finished, I'll be starting on the anti-estrogen, drug, Tamoxifen.

But for now, I'm just looking forward to a week of enjoying Erika's company and, if the forecast is correct, more beautiful weather. 

Flowers from my employer

A Little More Straightforward, a Lot Less Silly

The title of this post expresses what I'd like to see change about "Breast Cancer Awareness."

I never liked some of the silly breast cancer awareness stuff out there, and I like it even less now that breast cancer is personal for me.

A good example is "Save the Ta-tas." Really? 

How about "Save the life even if it means sacrificing the ta-tas?"

Or "You might be able to save the ta-tas, but after lumpectomy, one of them may be a little misshapen and smaller than the other, but after all, you survived cancer."

Not nearly as cute or catchy, is it? I realize that the aforementioned company donates five percent of the price of each item sold to breast cancer research, which is significant, but they are still a for-profit company that is in the business of selling stuff. The owner/ founder is a clothing designer who "has family members who've been diagnosed with breast cancer." I don't mean to be cynical, but nowadays, who doesn't? One in eight women is likely to be diagnosed with breast cancer in her lifetime. 

The founder of "Save the Ta-tas" said in an interview in 2011:

“When a person faces cancer it takes some time to laugh again. Our goal is to help them find that laughter.”

Apparently women whose ta-tas can't be saved will need to find their laughter elsewhere. 

As a breast cancer patient, I find laughter joking with friends about shared experiences like radiation tattoos, the possibility of picking up radio stations during wire localization for lumpectomy, and the ridiculously undignified experience of a breast MRI. Of course, like everyone else, my best sources of  laughter are the family and friends who share my life. "Save the Ta-tas" products are more likely to make me cringe than laugh. At least "Save the Ta-tas" is probably more transparent and well meaning than many other businesses that have jumped on the breast cancer bandwagon.

 To be successful in business today, a company must do more than just sell a good product.  According to a recent study, 80 percent of Americans are likely to switch brands, if comparable in price and quality, to one that supports a social cause. - Shopping for a Better World, Sariki Bansal, NY Times, May 9, 2012

Unfortunately, the commercial sector saw a window of opportunity to capitalize and "sexify" breast cancer. When a corporation wants to attract female customers, they strategically place a pink ribbon on the product and claim that a portion (usually an unnamed amount) will be donated to breast cancer research. And women everywhere endure a month focused on our ta-tas...

 Breast cancer is typically presented as a "sexy" disease, one that affects young women's bodies, even though 95% of new breast cancer cases occur in women 40 years or older, and the median age of a breast cancer diagnosis is 61...

 No organization would dare make heart disease or lung cancer into a sexy disease.

- Jessica S. Holmes, breast cancer researcher. Click here for the full context of her remarks.

Then there are the annual Facebook status games where women post cute, cryptic, often sexually suggestive statuses, (wink, wink, don't let the boys in on our secret, while we girls have a little fun for a good cause.) Here's this year's game, copied from Facebook:

 Hello Ladies! So its that time of year again when we try to raise awareness for breast cancer through a game. It's very easy and I would like all of you to participate. Two years ago we had to write the color of our underwear on our wall. Men wondered for days at what was going on with random colors on our walls. This year we will make references to our love life status. See below. For example, if you are "single," post "Blueberry" on your wall. There's no need to respond to this message; just post your corresponding answer on your wall.  Feel free to copy and paste this message privately to all the girls in your contact list to keep the game going!

BLUEBERRY = single;
PINEAPPLE = it's complicated;
RASPBERRY = I can't / don't want to commit;
APPLE= engaged;
CHERRY= in a relationship;
BANANA=married;
AVOCADO= I'm the better half;
STRAWBERRY= can't find Mr. Right;
LEMON = want to be single
RAISIN = want to get married to my partner.

I've never understood what these games have to do with breast cancer or how they help anyone, but I do know that for some people they can be hurtful. Click here for one example.

There may be a whole host of breast cancer patients and survivors out there who love this stuff, but I know now that a lot of them don't. Click for another example.

 Breast cancer is not a game or a joke, it's not fun and it's not sexy. I guess people want to feel good about themselves for "supporting a good cause" while they do things they like to do anyway and a lot of people just seem to like adolescent fun and games.

 
The cause of breast cancer awareness might be better served if this guy went home and called his mom to remind her to have her annual mammogram, since she's probably at higher risk than the sweet young thing he's ogling in the bar. Less than 7% of breast cancers occur in women under the age of forty. Of course, the women at highest risk for breast cancer don't have quite the same commercial appeal as the sexy young models featured in some of the "awareness" campaigns. But then, for many of these campaigns, it never really was about us, was it?

If the goal is really to increase awareness among women most at risk, we'd see more straightforward, but boring, slogans and Facebook posts like:

Reduce Your Weight, Reduce Your Risk

Increase Your Exercise, Decrease Your Risk

Got Family History? (...of Breast Cancer?)

Over Forty?  Had Your Mammogram This Year? 

Booze Is Not a Girl's Breasts' Friend  (Now, that one's almost cute and catchy, don't you think?)


There are a lot of good, worthwhile breast cancer awareness and fund raising efforts out there. So go ahead, Race for the Cure and donate toward research. Remind the women over forty in your life, and younger women with a family history of breast cancer, to get their mammograms. Wear pink ribbons if you want to.

Just please don't insult breast cancer patients by using a disease as an excuse for gratuitous silliness. 

Resting, Recovering and Rejoicing in Good News

Beautiful flowers from my brother & sister-in-law & family in Nebraska

It's been just two days since my lumpectomy surgery and I think I'm doing great. I felt like I received excellent care from everyone involved, well except maybe the nurse who started the IV, but that's a small detail compared to the rest of it. 

I checked into the hospital Wednesday morning and went to nuclear medicine to have the radioactive isotope injected, which would help the surgeon locate the sentinel lymph node. That was an injection into the breast and it did hurt, but was over quickly.

Next up was a chest x-ray, nothing remarkable about that. 

Then I went to mammography for the "wire localization" and bracketing of the tumor, which was necessary because my tumor was located so deep in the breast that it could not be detected from the surface. That was a long involved process and, I gathered, not an easy one for the mammography technician and radiologist. It required a lot of  precision on their part and it was humbling for me to realize how seriously they took it and how they viewed me as an individual and as a person, not just another job. The mammography technician told me that she had prayed "that God will help me do this right for you." 

The radiologist came in, introduced himself and said, "You wouldn't know this, but I've been thinking about you for the past three days and thinking about how to do this right. I want you to know that I'm going to do my very best for you." Wow! They explained to me that their goal was to give the surgeon the best chance possible of removing just the right amount of tissue to get clear margins around the tumor, without having to remove too much. This procedure was uncomfortable at times, but I was more than willing to cooperate, because I certainly wanted them to achieve their goal.

Finally I was taken into the pre-op area, where my surgeon and anesthesiologist  came in and talked to me. Our pastor got there in time to pray with us just as I was getting loopy and then he stayed with Rick in the waiting room for awhile after I was taken into surgery. Surgery took a little under the ninety minutes that had been estimated. I spent some time in the recovery room, was reunited with Rick and was home by about seven in the evening. I slept in a recliner that first night, because that was where I was most comfortable.

Yesterday was a restful day at home. About the most ambitious thing I did was to take a shower. My incision is about three inches long and is closed with "steri-strips," not stitches. Because the tumor was on the side of the breast near my underarm, the surgeon was able to access and remove the sentinel lymph node from that same incision. The pain really hasn't been too bad.

My oldest daughter, Kelly, arrived from Dallas late last night. It is so good to have her here. Today she took me out to run an errand and to have lunch, which we ate outside since it was such a beautiful day. While Kelly and I were out, my doctor's office called my cell phone to tell me that the pathology report showed that my margins and lymph nodes were clear: wonderful news and sooner than I expected it!

After we got home, my friend, Jennifer came by to visit, which was a treat. She has had two experiences with breast cancer, one fairly recent and pretty rough, but is doing well now. She has been a great encouragement and source of information for me. 

Tonight Kelly made a delicious dinner and dessert and we've had a good time talking and catching up.

God has blessed me graciously throughout this experience. I'm so thankful to Him and grateful for the prayers of my family and friends and even caring people I don't even know.