Healing Journeys

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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It has now been close to 3 weeks since my bilateral mastectomy and immediate reconstruction and I can say that I’m feeling much better.  Week one was a blur of medications and getting used to the pressure of the T.E.’s (Tissue Expanders).   Week two was the same with a little less severity in pain and pressure.  I was lucky that the surgeon removed my drains the first week and I was able to have a little saline removed from the T.E.’s to relieve some pressure. 

Upon reflecting upon my surgery, I came to the conclusion that I didn’t know enough going into all of this.  Don’t get me wrong, I did a lot of research and soul-searching, but I wish I had asked more questions; perhaps spoken to others who opted to delay reconstruction. 

Many women go the route that I did: T.E.’s followed by silicone or saline implants.  I have seen photos online and at my doctor’s office and most results look good.  But if I had to do it all over again, I would have asked my plastic surgeon to show me an actual expander. I would also have insisted on talking to a patient who had been through reconstruction.

There are things that catch you by surprise with any surgery.  My breast surgeon, who I think is wonderful and is one of finest breast surgeons around, didn’t find a good sentinel node (this happens sometimes) and had to remove 12 lower underarm lymph nodes instead.  Thank the Lord, they were all negative. However, my underarm and part of the top of my left arm are numb and I’m experiencing weird sensations in that area.  I wasn’t prepared for that.  I was also not prepared for the pain and pressure of the T.E.’s or for reading the many warnings that come along with ownership of the eventual silicone implants.  All of these things can be overwhelming and frightening.  But I’ve learned that nothing in the fight against breast cancer comes easily or is without risks or pain. 

For me, looking down at my surprisingly not-so-little breast mounds and nice cleavage immediately after surgery made it much easier to handle the loss of my gals.  I know that I made the right decision.  However, I could have benefited from having a little more info.  So if you’re on the cusp of your breast cancer journey, talk to other survivors, ask your surgeons lots of questions and do lots of research.  It will not only keep your mind off more disturbing thoughts, but it will make your experience easier.

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I opted for breast reconstruction with implants and the expanders were put in at the time of my mastectomy.  I regret doing the reconstruction on top of the mastectomy because I think it takes away from proper healing and who knows, I might have gotten used to living without breasts.  At the moment, the pressure in my chest is almost unbearable.  It feels like I have two creatures from the movie Aliens trying to pop out of me.  My entire underarm is numb and I’m hoping that sensation returns as this is also very uncomfortable.  My left side looks more deformed at the moment than the right side, but I have been told that when the actual implants are in place, I should look symmetrical.

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I’m home from the hospital.  I’m still in a lot of pain, but it’s tolerable with medication and relaxation techniques.  What hurts me more is thinking about women whose pain threshold might be less, women who are alone in their battle and women forced to leave the hospital too quickly.  Despite my phobia of germs, I would have stayed an extra day in the hospital because of the wonderful care the nurses and aids at South Miami Hospital gave me.  They were terrific and everyone was very reassuring and seemed to really love what they were doing.  And, the hospital food wasn’t bad either.

My surgeons, Dr. Derhagopian and Dr. Marshall, were wonderful.  My lymph nodes were negative, my tumor was about 2 cm and I’m waiting for the Oncotyping to see whether or not I will need chemo. I’m still praying about that.

 October was Breast Cancer Awareness Month and our local Comcast Cable-on-demand had several listings under “Pink Ribbon” that I watched.  They had information about surgeons, oncologists, diets, etc., all relating to breast cancer and breast health. They also aired a movie, Why I Wore Lipstick to My Mastectomy, which my husband and I watched together and found very true to life.   To the best of my recollection, this is the only chick-flick that he was ever willing to watch.  He even missed a few minutes of Monday Night Football without complaining.  I was amazed!

For breast cancer awareness month, I “Slept in for the Cure” for the local Susan G. Komen Race for the Cure because my surgery was so recent.  Instead of walking or running and getting sponsors, I created a page on the Miami/Ft. Lauderdale Komen site and asked that instead of flowers or get-well gifts, my friends and family pledge their money to this cause.  Thus far I have raised $525. YEAH!!!!

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I made it through my operation successfully! I had a bilateral mastectomy and the first step of my breast reconstruction.  Tissue expanders were placed under the skin so it will stretch to accommodate silicone implants.  The implants will be inserted at a later date.

I think that having a waiting room filled to capacity with my friends and relatives (who were all praying for me) really did the trick. God is good!!!!!  The surgery itself took less time than I expected.  It started at 11:30 a.m. and I woke up in the recovery room at around 2:15 p.m. To my surprise, I was up and about really quickly and I never got the fogginess that I had anticipated the anesthesia to give me.  There was pain, but I was expecting that, so I was not shocked.   
 
What I was shocked about was that my health insurance coverage caused me to be discharged from the hospital barely 24 hours after my surgery.  I know I was doing well and I know that the hospital staff noticed that I had lots of help, but I think that a one day stay after surgery is really not optimal for the patient.  I didn’t even get to ask many questions because there was just not enough time to gather my thoughts.  So because of this, I would like to mention that there is a petition going around the Internet which I thought was a fraud, but it turns out to be true.  I checked it out on Snopes.com.  The petition concerns increasing the insurance coverage for a mastectomy patient’s hospital stay to a minimum of 48 hours.  It’s called the Breast Cancer Patient Protection Act 2009 and here is a link to the Snopes.com page which encourages everyone who has been affected by this to contact their elected officials directly.  Click on http://www.snopes.com/politics/medical/mastectomy.asp  or use this link http://www.fightpink.org/legislation/hr-1691-breast-cancer-patient-protection-act-of-2009.html
 
When you click on the Snopes.com link, you’ll see an e-mail that I received just prior to my surgery. For me, leaving the hospital was no big deal, because  a) I’m a germaphobe and have heard that you can pick up infections in the hospital and  b) I had lots of support.  Unfortunately, many patients do not have the luxury of a close-knit family or a good network of friends.  Many breast cancer patients have small children; some have few family members and are single parents. These are the patients that could really use an extra day of rest and recuperation at the hospital.  So I hope that everyone reading this blog will take action to get this changed.

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