All gene tests are Negative

It is late and tomorrow I leave for a 3 day New Jersey Annual Social Work conference in Atlantic City. I will leave the conference a little early on Tuesday afternoon to rush back for a treatment of radiation at 4 pm. The great news is that my course of treatment can remain unchanged because I have no genes currently linked to cancer--- breast, ovarian, lung, colon or stomach-all came back NEGATIVE.  And I will start my estrogen lowering medication on Cinco de Mayo- Dr. Gor said that I should start the medication on a memorable easy date to remember as I will stop it 5 years from the exact date I start.  And since I was traveling- May 1st did not seem reasonable so I went the next best thing. 

I just returned from 2 full days with several of my college buddies. Lunch, Spa treatments, cocktails and conversation, dinner, train into Manhattan, great Mexican lunch and Margaritas at Toloache and then "CHICAGO" on Broadway- and a very slow train ride home to Caren's. 2 hours later, I pulled into my driveway to unpack and repack to leave in the morning for AC at 830 am.   I am so looking forward to time with myself and strangers I have no yet met. 

Good Night and Sweet Dreams You All.

Friday Is A Big Day AND I Am Getting A "Boost"

Friday is a big day.  At 7:15 am I start my day by seeing my chemotherapy oncologist, Dr. Gor- Then I leave to go to radiation around 8 am- Then I will see my radiation oncologist, Dr. Wilson. By 8:45 I will be going upstairs to Genetics and getting my testing results.  One would think that there was something wrong with me with all these medical visits and treatments. I keep going in and out of belief. Almost like I was a kid, pulling petals off a flower- "He loves me, he loves me not, he loves me, he loves me not". "I am sick, I am not sick, I am sick, I am not sick" Not sure what to think anymore. I want to get as much information as I can from Dr. Gor on Friday and make sure she tells me everything she knows about me and my breast cancer. From what I understand now, she and I are going to be connected for a very long time. Thank goodness, the genetic results ought to be rather straight forward.

Then I am going to get my nails done and head up north to my friend Caren's house. Maryann and Vickie and I are spending the day together with Caren....Lunch at Caren's- Spa afternoon--Dinner out. (I think I might have my first drink before Noon). The 4 of us have known each other since 1974---- 42 years. There are 2 other great friends from that time period. Jan- she has to work - she is a teacher of Art down in Asbury Park.....and the other Nancy. I will miss them both on Friday.  Nancy was not invited because she has drifted away from us "girls" so to speak. If I had my way, she would be included. I still want everyone to be together regardless of how relationships shift as I am not one to let go easily in relationships.  Thank goodness for my friends- they really help keep me together. I feel loved and valued. And I count on them for plain FUN- The next day, 3 of us are going into Manhattan to see a matinee show and have an early dinner. Then I will be coming home to get ready to go to Atlantic City for the  New Jersey Social Work Annual Conference- I really am looking forward to some alone time.

It is hard for me to have all of my feelings when I need to be concerned about other people's reaction. While I am alone, I can sort through my thoughts and emotions without judgment or fear. At the suggestion of another long - time friend and colleague, Rona, I made an appointment to talk to someone whom I used to see a year ago.  At the very least, it will provide me with safety and maybe help me get a better perspective on living well with a cancer diagnosis.

Today at Radiation, I learned I am getting a "BOOST"- An in depth explanation is written below but basically, it targets the area of the lumpectomy to "boost" my survival rate and kill off cancer cells surrounding the surgical site.  So I now have an extra tattoo and a big black mark around my surgical incision- I will wash it off tomorrow morning. Good night everyone, and sweet dreams.

A Radiation Boost - "A Little Extra" At The End of Radiation

Early-stage breast cancer is often treated with a lumpectomy or mastectomy and radiation therapy. Even though the tumor may have been small and no metastases were found, women and their doctors still look for ways to prevent a recurrence. The technique of giving a radiation boost at the end of treatment has been very effective in keeping breast cancer from coming back.

advertisement

advertisement

A radiation boost is one or more extra treatments targeted at the tumor bed.  This extra dose covers a small area and affects the tissue where cancer is most likely to return. Radiation boost treatments are given after the regular sessions of radiation are complete. Women who are 40 years old or younger at time of treatment get the most benefit from a radiation boost, but patients of all ages will have a lower risk of recurrence if they receive a booster treatment.

How is a Radiation Boost Given?

Breast cancer patients may have whole breast radiation (WBI) or partial breast radiation (given with external beams or brachytherapy), after which boost doses are given. If you're having a lumpectomy and are planning on radiation, surgical clips may be placed at the time of surgery, to help your radiation oncology team target your tumor bed during treatment. Your boost dose may be given with external radiation, via interstitial catheters, or from within a brachytherapy applicator.

The targeted boost dose may be given in one session, or during five to seven daily sessions.

Effect of Risk of Recurrence with Early Stage Breast Cancer

After being diagnosed with breast cancer, the first decision you may face is whether to have a lumpectomy or a mastectomy. You have to weigh that decision with the fact that breast cancer is most likely to recur in the same breast, right at the tumor site.

Many women opt to remove the whole breast, in hopes of never having breast cancer come back. A radiation boost is designed to prevent recurrence at the tumor site, even after a lumpectomy. Research has shown that women who had a radiation boost had fewer local recurrences - up to 50% less - when compared to those patients who didn't have the boost. Doctors hope that, because of better radiation techniques, more women will be able to choose lumpectomy over a mastectomy, and have a better quality of life after treatment.

For patients diagnosed with early stage breast cancer, either ductal carcinoma in situ(DCIS) or invasive breast cancer, a radiation boost protects against recurrence. Most patients who have a lumpectomy will qualify for radiation with a boost, and in some rare cases, mastectomy patients may also have radiation and the boost. There is some disagreement among radiation oncologists as to whether or not a radiation boost really benefits a patient diagnosed with DCIS, but it has become the standard of care.

  It's thought that a radiation boost may decrease the need to have a mastectomy due to recurrence after a lumpectomy by 35%.

Effect on Survival

Even though a radiation boost significantly reduced the risk of breast cancer recurrence, it did not appear to have any effect on overall survival up to 20 years out.  This does not mean that a radiation boost was ineffective, as concerns in addition to survival are important for people to consider during treatment.

Side Effects of Radiation Boost

A radiation boost is generally tolerated quite well, with fatigue being the most common symptom as with conventional radiation treatments.

A radiation boost does not appear to raise the risk of complications of radiation therapy, such as infection, and did not increase the risk of secondary cancers related to the extra radiation.  Secondary cancers are cancers that arise due to the cancer causing effects of cancer treatments such as radiation.

Fibrosis is the most significant side effect of a radiation boost and radiation fibrosis can be quite annoying.  Studies have found that at 5 years, as well as at 10, 15, and 20 years post radiation boost, the risk of breast fibrosis is substantial.  Thankfully this risk is often less of a concern for younger patients.

Okay Okay I Get It- I Am Not Dying.

Okay Okay I get it- I am not dying.

I was just expressing my emotions and where I am in my process. I have been in other places than this during this experience and I am a very emotional human being - things effect me deeply. My life seems short as much of what I wanted to experience I have not done yet.... some of those things seem important. Especially since I gave up so many others things that I once wanted- I finally found a way to not suffer about what I do not have in life by not wanting what I do not have.  I used to hope for a husband who loves me and whom I love, a life time partner or a larger immediate family of my own, or enough money in the bank to repair my home and cars, I have no new furniture- it is all hand-me-downs. My appliances are as old as my home. - almost 35 years old. I have to do it all by myself- it is hard to keep pushing through it all including Cancer. The process has been long and I am tired of it. For the last 20 plus years, my daughter came first- she needed my energy and my resources to give her a head start in every way I could. And when I look at her, I know I did right by her and hopefully she won't be sitting one day in a therapist's office telling them how she felt abandoned or smothered by her mother....that I was someone she could go to for comfort no matter what. That I let her live her own life and I always believed in her.   It just took so much time, effort, commitment, to accomplish that. I want time for me now.

I also think some of this reflection is the aging process. I am looking back over my life, even just the last 25 years and it has always been hard.  My breaks have only lasted a year or 2 but usually much less. I was almost out of debt and then I went and purchased a new used car for $10,000 which I am making payments on to 2 different sources over the next 2 years. My others cars are over 14 years old and I needed a newer car.  I feel so squeezed to just live my life and now Cancer. I am the happiest person I know who lives a life with struggles. I promise I will be okay again soon.  Just let me have my sadness and my thoughts for now.

Breast Cancer Makes Me Uncomfortable

Well everyone- I gave up my initial plan- which was not to have my breast cancer become part of my life and change the trajectory of it.  My original plan was just to be someone who had breast cancer once.  Now I have learned that is unlikely to be the case. It will remain in my thoughts for the rest of my life, not to be stored in a remote area of my brain but to be included in my daily consciousness. In addition, I will need to behave in ways to prevent a reoccurrence. I will need to submit to routine monitoring. Breast cancer has changed me and my life and not necessarily for the better. I certainly am sadder, being more aware of the shortness of my life and the days that move swiftly by. As I look at each and every person that matters, I see them fading and moving forward without me. I have a new disconnection from others and the experience of living. Cancer has pulled me to a new place which I truly do not care for - it can be excruciating to see how temporary everything including myself really is.   I find myself looking forward less and when I do, there is a dread rather than the enthusiasm I once was well known for in my spirit. Cancer makes looking ahead full of uncertainty. My body is healing and my spirit is sinking. I find myself wanting to disengage. Not outwardly, just privately. I am letting go of my dreams again and again. Dreams of more travel, dreams of being in a slimmer stronger body, of attending all the workshops and seminars that interest me and to hear speakers knowledgeable about all the things that fascinate me and hopes of reading all the books I wish to read. I am grieving my hope of finding and belonging to a community of like minded individuals. I am letting go of aging....... of having my "golden years" of freedom and independence.

I feel as if my whole life has been a struggle between my hopes and dreams and defeat. With each defeat, I have risen to create new dreams. This time, it feels hopeless. I have no more plans. I cannot retired for 5 years and 5 years is exactly the window cancer has given me to be closely watched for a reoccurrence. As much as I love my work and job, it drains me and leaves me little time and energy for all my other passions- like writing a book or 2, creating opportunities for public speaking, traveling to National Parks, visiting all the people that matter to me.  I want to live long enough to down size and get rid of my possessions that no longer serve me. I want to shop with my daughter for her wedding dress and walk her down the aisle. I can't count on anything anymore. Cancer has thrown me back to a time in my life where I was uncomfortable and the only way I managed emotionally was to live one day at a time. Although I definitely know how to do that, I do not like the anxiety that makes it so necessary. If I am to be a survivor, it will not be a survivor of cancer, but a survivor of the anxiety that it is wrapped in. Anxiety is my poison. It was the root of my deep clinical major depression 9 years ago. Anxiety undoes me. I function like I always do but with a heavy heart now.  When I got sick before I was looking for answers to an issue. Now, there is no need to think because the outcome is not something I can fiqure out. This is living in the unknown. Nothing is certain.  Although that might be a truth for everyone, it is not a thought that most people pay attention to on a frequent basis. My current treatment regime does not allow me to escape it. Cream on my skin twice a day.  Five days a week I disrobe and lie down under a machine zapping the left side of my chest. My head still looks different with outwards signs of being treated for cancer, which allows strangers to approach me and tell me how they were once where I am today..... reminding me that I have cancer while I am eating my dinner out with friends or standing in a grocery store line. "Please don't" I want to say- I really do not need to be reminded even by your success story. I prefer to escape that information as often as possible, especially right now.

I do want to thank you all of you for reading and listening. Those who know me well, know how hard my life has been with lost families, lost dreams and lost loved ones. My losses have all been tough. And you have made them bearable with your love and acceptance. Your gift is in sight. And it will keep me from deep suffering......... your love is a cushion to rest my soul upon as uncertainty surrounds me.





.

Cruise to Celebrate my 60th Birthday - Personal Journey Sent To Philadelphia Inquirer/Travel Section

It didn’t take long to convince my 23 year old daughter and her boyfriend to join me on a 14 day Carnival Cruise to the Southern Caribbean. Both were reluctant to use all of their vacation time for one celebration; my 60^th birthday.  But with some adjusting we found a way to make it work.  Leaving from Baltimore, we wouldn’t need to deal with the hassles of flying nor arrive exhausted to get started on a trip of a lifetime.

And that it was. From the moment we left, we were silly with joy at our good fortune.  Our cabin was quite roomy for 3 of us. We found a place for everything we brought along.  The first day at sea, we all took 2-hour naps. Amazing how tired one can be and not know it until you have time without stress. Which is exactly what this cruise was.  This cruise was planned way ahead of time, a month before my breast cancer diagnosis. At chemotherapy, I became known as the “cruise lady”. I needed to get the chemo done ASAP and recovered so I could travel with full strength.  Four treatments of dose dense chemo were successfully completed.  After the cruise, radiation would be waiting for me.

Our excursions were settled before we left. I had done tons of research on the Internet to find the best tours for our Caribbean adventures.  Our only mishap occurred on our first island, Grand Turk.  We rented scooters to explore this tiny island. I fell off once or twice while riding in the sand, but we still enjoyed swimming in the crystal clear water immensely. Upon returning to the ship, we spotted a sign warning passengers that scooters are dangerous, can cause serious injury and even death. Whoa- No need to do that ever again.

Every single day at all 8 islands was sunny, warm, light breeze and no humidity.  By the 6^th island, we were afraid to say anything out loud because it might have jinxed us.  But our luck continued until the end.

Our busiest days came back to back. First we went out with naturalist Levi Baron in Dominica and then toured with Spencer Ambrose in St. Lucia. Each island offered spectacular views and experiences beyond our expectations. Our trip to St. Lucia had become memorable for another reason. On his website, Spencer had mentioned that he collects school supplies for St. Lucia’s children. I decided to do it up right and got my friends and family involved. We brought 6 boxes of school supplies along. Our cabin steward Kurt was surprised at first, but Carnival was so cooperative with the whole idea, storied them at Guest Services and helped me with Customs the day of arrival.  So not only we did we receive a vacation of a lifetime to celebrate my birthday, we gave a piece of ourselves in creating a friendship with Spencer and the children of St. Lucia.

The mineral mud baths were originally built in 1784 for the French troops of King Louis XVI so they could benefit from the healing therapeutic waters.  La Soufriere Drive-In Volcano and Sulphur Springs Mud bath.

I Have A Hairline Again! YIPEE.

In the shower on Sunday, I was washing under my arm and felt a little something- a soft hair - maybe- I have not had to shave under my arms since January.  Ehhhhh I thought- let me run a razor over it and see if there is any hair in it - and sure enough there was. So I looked a little closer at my head and it did seem a little darker but I was not sure. So I asked my daughter Madison, who sees my head uncovered more than most people.... she could not really tell either.  My hair felt feathery to me - soft and cosy.  Then Brian, her boyfriend came over last night and I asked him..... and he said YES. I have a hairline again..... YAY.  It is slowly growing in- 7 weeks after my last chemotherapy treatment.  I am so excited to start with new hair styles.   Might even keep it very short- who knows.

Aside from being tired and having stomach upset, I am feeling very good. I have helpers at work to help me get the cream on all the radiation treated areas and Madison has been doing it at home. I had lunch with a good friend today who had treatment for breast cancer more than 10 years ago and she said hair is over rated. Truth is, I have not minded not having hair except that it draws attention to me and makes others uncomfortable because it is seen as a sign of being "sick". And I have been highly invested in not acting like I am sick.... I have been trying to live as if I nothing serious is really wrong.  And for the most part I have been successful at that. And without hair, I can get ready in much less time in the morning. We also talked about the benefit of being able to count our blessings..... even the simplest of them.  We both sleep in warm homes and have food in our refrigerator every day. Yep- there are many blessing even when one has breast cancer.  Like learning that you got a good head.   I wonder if that is what they mean when they say you have a good head on your shoulders?  ........ I am grateful that my brain is still working. And my life will go on.

Who Knew How Many Cancers Are Genetic

Friday I had the opportunity to meet with a genetic counselor finally. I learned that just being an Ashkenazi  Jew is enough to go ahead and get genetic testing for breast cancer. There are some genes that put you at risk for a special type of breast cancer too like the one I had which is lobular not ductal (ductal is the most common) Then I learned that there are some breast cancers that are also related to stomach and colon cancer.  And then once everything was on paper, I could see that I have had more experiences with cancer than I thought. I did have a basal cell removed in my early 30's from my forehead and I had a precancerous polyp in my colon/rectum removed in my late 30's. 

I brought with me my mother's reports from Penn from 1968 and 1969. One detailed report was even written on her birthday..... the day she turned 42. She died 6 weeks later.   I have had several medical health care providers study my mother's chart from Penn.  She likely had Cancer in her lower GI tract (stomach, liver, pancreatic,)  before it moved to her lungs and  possibly her breast. However, we will never know how significant her having a partial hysterectomy was as she had that at Lankenau hospital several years earlier. I was able to get her records ( before HIPPA) from Penn because it is a teaching hospital and had them on micro-film.  From the reports, I learned that she and I had the same breast condition in our right breasts too- a papilloma. I had mine removed since they were already doing surgery on my left breast, I wanted it out anyway- they usually do a wait and see...... but my surgeon had no problem with removing it since she was already there- what was one more cut. 

So the bottom line is that I am being tested for a wide panel of genetic cancers- over 40 of them. Not all of them have a high percentage of getting cancer like the BRCA genes but I wanted to know as much as possible. The BRCA genes are not even a 100 % predictive - it is closer to 60% chance of getting breast /ovarian cancer if you have that gene.  I am sure as the decades roll on, they will discover more and more diseases as well as many other things about being human like personality traits, on our genes.   I will have the results in 3 weeks. Just before Passover...........hmmm. 

More Change and Work To Do.

Well the Cancer saga continues.  I know for many people the whole radiation treatment is a "piece of cake" but it is like no cake I have ever eaten. For starters, it is a lonely experience. Strangers called radiation therapists set you up on a small table with the necessary equipment to get you in the correct position, a mold of your head, and in my case, stir ups for my arms and a knee cushion for comfort. Then off with the top of my gown and on with the radiation. The "therapists" disappear after I am perfectly lines up at 91.2. And there I lay. Alone while a big machine rotates around my chest, zapping my breast here, there and everywhere. I will say it is quick and they do play good music but it is still a lonely experience for me. With little distraction for those 8 to 10 minutes, my thoughts wonder.  Maybe I should have gotten a Mastectomy? Why can't I easily change my eating habits? I wonder what the lady at the party didn't do to keep the cancer from coming back? I do not want it to ever come back. .... In that box of a treatment room, I am left alone with thoughts I would rather not be entertaining, after all, they are not so entertaining!  On the first day, the nurse explained that  I would need to get a special cream and apply it twice a day to my whole breast area including under my breast and under my arm to try and keep the skin from being too damaged. OKAY I can do that. I got 2 jars and left one at work. At lunch time, I apply it at work and bedtime at home. 

The next thing I know, diarrhea is back. No! I think it can't be. That is not a side effect of radiation. I was perfectly fine the whole time on the cruise.  What is going on here?  So I go look it up- Oh yeah- it can happen. I am going to have loose stools for 7 weeks now. Unbelievable. 

Everyday in the changing area, there are many of us.... all lined up for our treatments, this one for lung cancer, that one for cervical cancer. OH MY GOODNESS. I do not want to be here.  I do not want to know you and your story. Please stopping talking to me about it. I just want to get in and get out. 

Then the nurse navigator shows up one day. She has hard news for me. The team reviewed my chart and determined I was at high risk for lymphedema. But they won't start treatment to avoid it or to decrease until all of my 7 weeks of Radiation are completed. So why are you telling me this crap now I wonder. Besides, I am not having a problem- I went snorkeling, I was swimming, I moved easily. I have no hardness. My lymph system is working good I tell her.  She exams my hands and my wrists. She thinks there is swelling. I do not see it- I am just fat not retaining fluid. I do not want to get lymphedema- I already know I hate it. I do not want to wear a SLEEVE.  Thank goodness my brain is functioning as the nurse did mention that all the nurses wish that they would start the massage treatments for patients before radiation was completed.  Thank the Lord for YouTube! SEARCH: Self massage for Lymphedema- Viola! Okay- I will start tonight. One more thing to add to my to do list for cancer management. 

Lymphedema is the build-up of fluid in soft body tissues when the lymph system is damaged or blocked.

Lymphedema occurs when the lymph system is damaged or blocked. Fluid builds up in soft body tissues and causes swelling. It is a common problem that may be caused by cancer and cancer treatment. Lymphedema usually affects an arm or leg, but it can also affect other parts of the body. Lymphedema can cause long-term physical, psychological, and social problems for patients.

The lymph system is a network of lymph vessels, tissues, and organs that carry lymph throughout the body.

The parts of the lymph system that play a direct part in lymphedema include the following:

• Lymph: A clear fluid that contains lymphocytes (white blood cells) that fight infection and the growth oftumors. Lymph also contains plasma, the watery part of the blood that carries the blood cells.
• Lymph vessels: A network of thin tubes that helps lymph flow through the body and returns it to the bloodstream.
• Lymph nodes: Small, bean-shaped structures that filter lymph and store white blood cells that help fight infection and disease. Lymph nodes are located along the network of lymph vessels found throughout the body. Clusters of lymph nodes are found in the underarm, pelvis, neck, abdomen, and groin.