Healing Journeys

I never thought that my first experience with plastic (cosmetic) surgery would be to cover up the scars and reconstruct the breasts that I lost to cancer.  I always imagined that it would be surgery on my nose with its deviated septum.   Since surgery and general anesthesia scare the heck out of me, I didn’t anticipate getting any kind of work done at all.  My fears, as well as the expense, made plastic surgery a very distant thought in my mind.  Yet here I am. 

The good news is that reconstructive surgery is covered by insurance at any time during the life of a breast cancer patient who has had a mastectomy.  You can even get touch-ups; get your implants replaced, etc.  The bad news is that even with insurance, you still have to come up with some money for deductibles and co-insurance.  In my case, I was asked for $4000 for this next breast implant surgery. I negotiated with the doctor’s office and was able to give them less and be billed for the rest.  I’m not in great financial shape right now, and like many people, my husband and I are just getting by.  We don’t have extra cash for piling medical bills, vacations, or even the dental work that we so desperately need. 

I’m thankful that God answered my prayers and that I did not need chemotherapy.  I’ve heard of people nearly going bankrupt just to pay for treatment, and these are people with insurance!  It’s times like these that I start doubting my decision to stop working in order to be a stay-at-home mom.  But when I look at how well my daughter is doing, and that she’s home with me rather than being in an after school program, I think my decision was worth it.   I wish that all women could stay at home with their kids if they want to, but sadly many can’t. 

What does being a stay-at-home mom have to do with breast cancer?  Well, having breast cancer makes you want to enjoy each day, but many women don’t get to do that. They don’t even get to fully recover from their treatment because they have to get right back to work.  We live in tough times and indeed our healthcare system needs reform.

I wish that women who wanted to, could stay home and raise their kids, tend to their families and take care of themselves.  In my opinion, many women can’t do that because their families need two incomes in order to survive or because they’re single moms. Maybe we’d see a decline in health issues affecting women if they had less stress.

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As if getting breast cancer isn’t bad enough, I now have to deal with an extremely high triglyceride level in my blood.   It gets worse.  Apparently, tamoxifen, the medication that I take to prevent a breast cancer recurrence, can increase triglycerides in the blood.  So now I have to be concerned about a heart attack or stroke down the line.  Thank goodness I’ve already been taking a baby aspirin every night to help prevent this from happening. 

My primary care physician has given me three months to lose 15 pounds, though I actually could lose 25. I have to start getting my triglyceride level down or my doctor will have to put me on medication to do so.   I want to avoid that, so I started my diet and will soon be on a regular walking routine. 

I was told that I have to stop taking tamoxifen one week prior and one week after my implant surgery because it may increase the risk of my getting blood clots.  Even though I doubt that the tamoxifen is causing my elevated triglyceride level, because I’ve been on it for only a few months, I’m anxious to see how I’ll feel when I’m off it.  I can’t say that I’ve had any side effects specifically from this medication, but I haven’t been feeling like myself either.   As I feared, last month I skipped my monthly menstrual cycle and instead had only some discharge.  I’ve also been feeling rather exhausted.  So it’ll be interesting to see how I feel when I’m off this medication. Of course, I’ll be on other medications after the surgery… for pain and antibiotics to prevent infection. 

Keep me in your thoughts and prayers as I get closer to the big day that happens in about three weeks.    Reconstruction here I come!

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The surgery to replace my tissue expanders with real breast implants happens in a month and I was told by my plastic surgeon to shop around for the right-sized boobs.  What? She suggested that I look through the pages of Playboy and the Victoria’s Secret catalogue to do this. But I really don’t want to look at other women’s healthy, beautiful breasts while I’m still missing my own. Sure, my old boobs were way too large and were further south than they needed to be, but they were mine.

People try to cheer you up by telling you that one of the perks of breast cancer is getting new boobs, but this only partly true. Yes, getting new boobs means that the old ones, you know, the ones that tried to kill you, are no longer threatening your life and that you might get a better-sized and better-located pair.  But, the loss of sensation can never be recovered and I will miss that.  That may explain why many women get implants but don’t bother to have the nipple and areola created.

I am excited to get my new implants, which will be more comfortable than the tissue expanders that I’ve had to put up with.  I can’t even sleep on my side with them, but it’s another surgery, another recovery period and even if they look beautiful, which I’m sure they will, I will always miss my old, imperfect breasts.

I’m worried how this surgery will affect the sensation I do have in my chest area.  Many women report not having any feeling over their entire chest after bilateral mastectomy, but except for my underarm, I still have feeling.  Occasionally, I even get strange, “phantom” sensations; sensations like my nipples are still there. I could be doing something around the house and all of a sudden, I feel exactly like I used to feel when my nipples rubbed against my T-shirt.  I guess it’s akin to the phantom pain that people who lose limbs feel.  I didn’t appreciate those sensations before my surgery and almost always wore a bra to avoid them.

Even if these phantom sensations don’t last forever, I now welcome them.

Gotta go look at some “porn”. I’ll let you know how my shopping goes.

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It’s a brand new year and I wish everyone the best.  Though I ended last year a bit depressed, I’m hoping to make a fresh start this year and do whatever it takes to keep a positive attitude and stay healthy. 

I’ve ordered lots of self-help books from the library; some are religious and others have messages about visualizing what you want to achieve. 

I know positive thinking is common sense.  Of course it’s better to focus on the positive rather than the negative!  However, I’m a real person with real feelings.  I’m also a woman with ever-changing hormones and staying upbeat all the time remains “iffy” at best.  As for visualizing things into happening, I’ll give it a shot.  Ultimately, however, I know my faith must lie in God.  But even God expects me to do my part. 

My part includes doing certain things that are necessary for my healing. Eating well and exercising are two things that I must start paying more attention to.  Finding time to relax and enjoy my family are also things I must do.  I’m a pretty simple person, so that shouldn’t be too hard.  I don’t need a spa or a fancy vacation; I can just watch the travel channel or take a walk and look at the beautiful trees.  The food and exercise thing will be a bit trickier.  This is where I wish I had the resources to afford a personal chef and an exercise room in my home.   Well, maybe for my first visualization exercise I’ll try focusing on getting my own personal chef and moving into a larger home with space for an exercise room.  Until then, it’ll be Mama Mia’s Cafeteria (which means me in an apron cooking for myself) and my exercise stepper can do double-duty as a serving tray or very low coffee table.

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This year, my Christmas tree is decorated in pink to symbolize what I’ve gone through since my breast cancer diagnosis. All of the ornaments have meaning and some of the older ornaments have new meaning.  Here’s what they mean to me:

Pink ribbons are symbolic of breast cancer and heroism.
Icicles are for the tears shed in sorrow, fear and relief.
Baby ornaments remind me that I have a beautiful daughter to live for.
Angels remind me that God’s angels are by my side at all times.
Glass hearts represent not only my love of life, but the fragility of life.
White lights signify the many prayers that I received that uplifted me and gave me a serene glow.

Lastly, my daughter and I filled some new glass orbs with pink confetti. I’ve dedicated these orbs to every woman who has ever been diagnosed with breast cancer. May God bless and empower us to fight this awful disease with inner confidence and peace. This Christmas, and always, I will pray for our continued good health and survival. 

P.S. I want to share a bit of good news.   My doctor told me that I’m a good metabolizer of tamoxifen.  It’s a blessing to know that the only medication that I’ve been prescribed will indeed be metabolized and be of benefit to me.  And, with God’s help, it will keep me cancer free.  

Happy New Year.

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It’s the holiday season and I have a lot to be thankful for. And, for the most part, I am.  I’m very lucky to have health insurance; that my household has a source of income; and especially that prayers about my breast cancer have thus far been answered. 

So why do I feel so depressed?  I think that I’m feeling a bit abandoned.  I know that most of the people who are closest to me are there for me, but there are many times during the day when I just feel completely and utterly alone.   I know that God blessed me when I was told that I wouldn’t need chemotherapy, but since  I’ve been doing so well, I think people just assume I’m OK.  Would more people be there for me if I had needed chemo?

Right now, strangers on the street would not know that I had been through major cancer surgery scarcely two months ago.  I look healthy enough, but am I?   I try never to think about the possibility of a recurrence, but I do.  I don’t want to die and I don’t want to be sick ever again. 

I also know that there are things that I should be doing to help me get and stay healthy, but I’m not doing them.  I haven’t changed my diet or lifestyle, at least not yet.  I keep telling myself that I will after the New Year, but will I really follow through?  There are some stressful things in my life which are out of my control at the moment, but I should at least eat well and exercise, right?  I wonder how many women struggle with this.  We know what we need to do, but we just can’t get around to doing it.  Could the prognosis be worse for couch potatoes than for health conscience individuals? Can feeling depressed and guilty about my lifestyle contribute to a recurrence? These are things I’m struggling with. 

I’m also worrying about whether or not I’m a good metabolizer of tamoxifen.  From what I’ve read, if you’re not, the drug isn’t very effective.  Unfortunately, there aren’t many alternatives to tamoxifen if you’re premenopausal and a poor metabolizer. I’ll have to discuss this with my oncologist. 

Also plaguing me this week, are my 10-year-old daughter’s school and behavioral issues. Don’t get me wrong, she’s a great child, but issues come up. I find that when I handle these issues and resolve them, I feel more in control of my life.  There are times, though, when I worry about who would handle them if I wasn’t here. Hopefully that will never happen.  I intend on being around for a long time, God willing. 

Sorry if I sound a bit down.  It must be the time of year.  I wish all of you who are reading this a very happy and healthy holiday season.  I hope to soon share with you what I learn about my metabolizing tamoxifen.  Until then, keep me in your thoughts and prayers.

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It’s now close to two months since my surgery and I’m doing pretty well.  However, when I went to physical therapy to help me regain range-of-motion in my arm and prevent lymphedema, my therapist noticed that my left arm was a bit swollen. That indicated that lymphedema was in fact beginning. She said that I needed lymphatic drainage massage to help my lymphatic system move the fluid out of my arm.  I was both disappointed and surprised because until now, I had been doing so well and I was very proud to be able to carry my own groceries, sweep, mop and basically go back to being a normal housewife.  I know it‘s not a glamorous job, but when you’ve had cancer, you stop taking the little things for granted and even learn to appreciate mindless chores.

Because of the results of some recent lymphedema studies that I’ve read about, I was under the impression that I could lift heavy things (in moderation) without risk.  But I was told by my physical therapist that these new studies on lymphedema and the benefits of weight lifting are still controversial.  She said that everyone is different and that lymphedema can strike at any point, even years after a mastectomy, in patients who have had underarm lymph nodes removed.  The good news is that lymphedema can be controlled and treated. Unfortunately, it can’t be completely cured.  The key, as with breast cancer, is catching it early and getting treatment. 

This brings me to another controversial issue that was in the headlines recently.  What is with the U.S. Preventive Services Task Force recommending that women wait until age 50 to begin having mammograms and then having them every two years?  I can’t tell you how many women in their 40’s I’ve met, who, like me, would not be alive today if they had waited until age 50 to have a mammogram.  I’m concerned that many insurance companies might  start following the task force’s lead and stop paying for routine mammograms for women in their 40’s.  So I urge all of you to speak out about this outrageous and disturbing recommendation.   Breast cancer organizations, hospitals and doctors have made great strides in getting the word out about early detection and this sets them back.  My fear is that some women will now ignore breast cancer symptoms because they’ll think it unlikely that they’ll get breast cancer before age 50 or because they might have to fight with their insurance company to pay for a mammogram.  This is just wrong, so please speak up.

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You know what has been really difficult during this brief time that I’ve been battling breast cancer?  It’s been watching my 10-year-old daughter blossom and bloom before my eyes. Her body is changing as much as mine. But she’s just starting on the path to womanhood and I feel like I’m at the end of the road.  My daughter’s breasts are budding and mine have been removed. My daughter will soon be starting her menstrual period and mine may very well be ending because of the anti-estrogen drug, tamoxifen, that I will take for five years. Call me crazy, but my periods never bothered me. I actually looked forward to them.  I know most women want them gone, but to me my period was the faithful visitor that reassured me that I was still a young, vital woman. 

I already knew that I was approaching menopause. I was probably premenopausal when I was diagnosed with breast cancer, because my hormones had been tested and were out of whack. But I’m not prepared to let go of that part of myself.  I was hoping to still have my period when my daughter got her first one. When I read that chemotherapy (which I thankfully avoided) and tamoxifen, which I am now taking, could put me into a medical menopause of sorts, I was greatly upset.  In fact, it made me quite sad. 

Besides worrying about surviving, I now worry about being less of a woman, or at least an altered woman.  God willing, all of these alterations will be for the better, but they’re still scary.  I have never taken any medication for any length of time and now I have to take tamoxifen for five years.  This drug has a long list of side effects that I have to keep in mind, yet not focus on, or they’ll simply overwhelm me.  I have to keep reminding myself that the benefits outweigh the risks. I need to remember the pros and forget the cons.   

It’s now been 10 days since I started on tamoxifen.  So far, so good. I pray before I swallow each pill, which I take regularly in the afternoon with a meal.  I have not noticed any side effects, but I’m already late for my monthly visitor.  This could be the beginning of the end of that chapter of my life.

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A few weeks after my surgery, I received my personal Oncotype DX score. This score is from a test that was done on my tumor tissue. Here’s an explanation of the test that’s from BeWell.com. You can find the whole article at  http://bewell.com/ArticleDetail.aspx?id=2296&type=1:  

“The Oncotype DX test determines how 21 specific genes – 16 breast cancer related genes and 5 reference genes – are expressed (that is, their level of activity) within a tumor sample. The measurement of these genes is combined into an individualized result called a Recurrence Score®. The Recurrence Score is a number between 1 and 100 that correlates with the likelihood that your breast cancer will return (metastasize) and also indicates whether you are likely to benefit from chemotherapy.”   The test is not appropriate for everyone with breast cancer.  You can talk to your doctor about it for more information.

My score was 11.  The lower the score, the better your chances are that the cancer won’t recur within 10 years and the less likely you are to benefit from chemotherapy. My score meant that I had a 7% chance of recurrence.  I was thrilled to get this news, but it also made me feel guilty.  I know there are other women who weren’t so lucky; who are going through chemo and dealing with its side effects.

I also began to second-guess the treatment that was recommended.  My oncologist, Dr. Wang, was thrilled with my low score and called me right away to tell me that I would probably only need to take the oral anti-estrogen, tamoxifen, for 5 years. No chemotherapy. That was great. But even though I didn’t want chemo, I almost came to expect it. I was mentally prepared for it.  So when the results were tallied and my options were put before me, I began to question if taking tamoxifen alone would be the right thing.   I had done a lot of research on this topic, but I just couldn’t shake this uneasy feeling.  I looked back over all of my test results, including the pathology report, and did more research on the Internet.  I felt more reassured, but I did find one thing in my pathology report that troubled me.  Apparently 10% of my 2 centimeter tumor was a more aggressive type of cancer, called micropapillary carcinoma.  I know that’s not much, but I wondered what that meant in terms of my Oncotype score.  I asked my breast surgeon, Dr. Derhagopian, if the micropapillary component of my tumor would in any way change the result of the Oncotype DX score, and his answer was “No”.  He agreed with Dr. Wang and said that he was very confident that tamoxifen would be the right treatment for me.  He said that he had been quite certain that I would get a low Oncotype score because all of my lymph nodes were negative.  I had two of the best breast cancer doctors in South Florida reassuring me that hormonal treatment would be the way to go. So off to the pharmacy I went.  I’ll write more about my experiences with tamoxifen at a later date.

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I’m just four weeks post-surgery and am doing very well.  I have good range-of-motion in my arms, though the numbness under the left arm is a bit bothersome at times.  I’m frightened about shaving my underarms, so I checked with my surgeon, Dr. Derhagopian, who suggested that I use an electric razor instead of a chemical hair remover.  I also asked him if deodorants can cause breast cancer and he said that there’s no proof that they do.  I believe him, but I still purchased a natural alternative, without aluminum, and will see how that works.  Since exercise is now a must for me, I don’t want body odor.  But I don’t know how the natural deodorants will compare to the ones I’m used to.  If you’ve found something natural that works, please let me know.

At this point, I feel a bit more in control of my situation.  This is due to my new mind-set, which is to focus on the positive and not the negative.  It’s also due to the tremendous support I’ve received.  My mother has been a constant fixture at my house, helping me with meals, picking up my daughter at school and accompanying me to my numerous doctors’ appointments.  I can’t thank her and my dad enough for being there for me 24/7.  My husband has been dealing with this pretty well too. He has not seemed turned off by my “lack of rack”. Then there are my wonderful, close friends who have had my back when my front was being remolded and when I was falling apart. I have also made lots of new, supportive friends including many inspiring and courageous women who are also dealing with this disease. My health professionals at Baptist Health, especially the doctors, seem to have just the right words and attitude to make this experience easier.  I used to have trouble finding compassionate doctors, but ever since this happened to me, all of my physicians have been superb and kind.  And I what can I say about The Wellness Community, except that it does a spectacular job of helping people with the big “C”. 

I truly have been lucky in the amount of support I’ve received. However, the single most important source of support for me has been my fellow church-goers, whose prayers and encouraging words uplift me.  Going through this has renewed my spirituality. I’m a Christian, and I can personally attest to the power of prayer.  It really works and God is indeed good! 

I encourage anyone who wants to comment on this blog, to do so.  It doesn’t matter where you are in your life or what your beliefs are.  It’s my wish that we can connect here and help one another, answer questions, deal with problems, make suggestions and just share anything pertinent about breast cancer.  And who knows, maybe I’ll be able to create a virtual bra for you all to sign like the one I actually had my friends and family sign. In case you were wondering, it’s a 42D support bra. The photo is attached.

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