On Tuesday, July 24. I spend several hours at PA Hospital meeting with health care professionals about my treatment plan. My first appointment was with Dr David Mintzer, a medical oncologist, who will coordinate my medication after radiation. Since my cancer is estrogen receptor positive, I will be taking Anastrozole for 5 years to block estrogen development in my body, thus starving the cancer cell’s potential growth. There are some problem side effects which I will have to be careful of, including joint pain and weakening bones.
He also explained the Oncotype test which my tumor is getting now. It will tell if I need chemotherapy which he and Dr Sataloff doubt but the test will be to check for sure. Using 21 DNA markers from 1 to 100, it analyzes the percentage of probability of future cancer development in the body. As a Stage 1 early detected lucky-as-can-be lady, my outcome looks great but we still look to be sure. If I happen to need chemotherapy, Dr Mintzer is my man!
The next appointment was with a nutritionist Debra DeMille who went over some general principles of healthy eating which I could always use reminding about-
Eat a mostly plant-based diet- whole grains, dark leafy veggies, cruciferous veggies, green, ginger and camomile tea, natural peanut butter-no trans fats, lots of fruits and veggies.
Exercise- fatigue of radiation does not respond to naps. Take a walk.
She offered the many programs the Joan Karnell Cancer Center has including art and music therapy, massage therapy, counseling, support groups, food and cooking classes. I will be taking part in some of these over the next few months.
So the up side of cancer is free massage…hmmm.
On June 4, I was at a training session at Vertex Fitness with Dwayne, my personal trainer, when my cell phone rang. I told Dwayne I had to take the call. I walked away from the machines to sit on the sofa and hear the breast biopsy results -there was cancer. I had invasive lobular carcinoma. I came back after quietly crying for a few minutes and being very shook up but somehow pulling myself together enough to finish the session saying I needed to be strong to face what I would have to face in the immediate future and who knew how long I would be able to exercise with what I had to face? I had no idea.
Dwayne and Kelly said they were behind me and would work with me whatever I needed. I went as often as I could on my regular routine until June 18, my last visit, when we went on vacation and then I had the surgery on July 11. On July 20 at my post op doctor’s visit, I was surprised that Dr. Sataloff said I could return to exercise and weights. Monday, July 23 was my first day back to Vertex Fitness. I was really scared. I did not sleep well the night before. I was worried that I would hurt myself (which I worry about anyway) even though Dwayne is very careful that no one hurts themselves while doing training or strengthening exercises. I know that but still feel fear. What if I pull a muscle? What if the stitches rip out? What if? What if? What about my back which I am having problems with? I am getting an MRI and x-ray to check on it.
Kelly started me and Dwayne took over. They eliminated some regular exercises and modified others to be sure that I had a successful session. I was huffing and puffing so it was not easy but it was not overwhelming. It was just right for coming back after surgery and a long hiatus. I knew I was in good hands. The session was personalized with my issues in mind.
If you are looking for a personal trainer, I highly recommend Vertex Fitness in Bryn Mawr. They’re the best as far as I am concerned.
Next week I will be back to complaining about reps!!
Last week I found two books between the doors on Friday afternoon when I came home from shopping. One was dropped off and one was shipped from Amazon.
The first one I recognized as I had actually taken out of the library years ago. Thanks to my friend Judy I am rereading it again from a much different place. The Dr Susan Love Breast Book-4th Edition is a classic, as it says on the cover, ” The Bible for women with breast cancer.” It is filled with great general information about the breast as well as specific information about every kind of problem you could have and then some. it also talks about all types of treatments and emphasizes taking your time about deciding with treatment to select for your particular case. There are charts and statistics galore. This type of book you read, skim and skip chapters and parts that do not pertain to you. On Saturday I devoured quite a bit of it.
The other book that I received on Friday from Amazon was sent by my friend Sandi is titled Simple Abundance: A Daybook of Comfort and Joy by Sarah Ban Breathnach. Simple Abundance is a book of 366 evocative essays-one for every day of your year-written for women who wish to live by their own lights. In the past a woman’s spirituality has been separated from her lifestyle. Simple Abundance shows you how your daily life can be an expression of your authentic self … as you choose the tastiest vegetables from your garden, search for treasures at flea markets, establish a sacred space in your home for meditation, and follow the rhythm of the seasons and the year. Here, for the first time, the mystical alchemy of style and Spirit is celebrated. Every day, your own true path leads you to a happier, more fulfilling and contented way of life-the state of grace known as… Embrace its gentle lessons, savor its sublime common sense, dare to live its passionate truth, and share its extraordinary and exhilarating gift with every woman you encounter: the authentic self is the Soul made visible. I started reading it from June 1 and am reading month to month. It is a charming and delightful read which makes me want to clean out my closets and organize my house more. I do believe we live our authentic life in the daily things we do. Let’s do it beautifully!!
After reading so much of Dr Love’s book, I realized she updates her book every 5 years and that there is now a 5th edition! So on Sunday I ordered it from Amazon. Here is what they say about it: The landscape of breast cancer has changed. New, non-invasive diagnostic techniques, new knowledge about prevention, new genetics, new treatments, new alternative and complementary resources are beginning to turn breast cancer into a chronic and perhaps preventable disease. Dr. Susan Love, whose earlier work has won the trust of women all over this country and abroad, has entirely revised her indispensable guide to reflect the very latest information. Readers of Dr. Susan Love’s Breast Book will learn of the recent breakthroughs in genetic research, of Dr. Love’s own work in developing a less invasive and highly accurate diagnostic technique, of the latest studies into preventive measures such as tamoxifen and dietary strategies, and of promising outcomes from new treatments for metastatic cancer. In the same warm, supportive, and often delightfully candid tone that has brought confidence to millions of women, Dr. Love helps each reader plan her own path through diagnosis, treatment options, and the changing world of HMO’s and insurance. She also offers sound advice about combining alternative self-care with topnotch medical help.
I look forward to comparing what is in the new edition to the one I have.
Thanks to my friends for the gifts of books!! I love to read and share what I read with others.
Today I went for my post-op check up with Dr Dahlia Sataloff who had to snip a few stitches which did not melt like the rest of them. I still have some aches and pains and have to wear a bra, even to bed, to keep the soreness at bay, but considering I had surgery 9 days ago, the pain is not bad. She gave me an okay to do all activities, even my strengthening exercises! So back to Vertex Fitness for me!!
The text results are good and the stitches are beautiful! I knew I was in good hands. She is a fabulous surgeon who has a great aesthetic sensibility. She made the incision in an unobtrusive place in a horizontal position so that is is almost invisible. Would a man have done the same? Who knows? I just knew when I saw her, dressed so well, and a woman, that she would care what it looked like… and I was right.
Of course a successful outcome is my number one concern but I am glad to have it with the minimum of bodily change. I am not sure that is every surgeon’s hope as well. A good rule of thumb might be to see how well your surgeon dresses. It worked for me.
Today I got the good news that the lab report showed my margins from the tumor tissue were clean- no renegade cancer cells so no more surgery is needed to get clean margins. Also, no cancer was found in the lymph nodes so I am still at Stage 1 which is great news and made the surgery relatively easy. Yeah!!!. Dr Sataloff will be sending off the tumor for more testing to see whether it is the fast growing kind and would require chemotherapy, but she doubts it. It will take a week or so to find out. This is a slight bummer since I cannot start radiation until I know for sure that I do not need chemotherapy. I go Friday for my follow-up surgery visit so I will know more then.
The really bad news I found in today’s New York Times article about long term threats of cancer treatments causing other cancers years later. Reading about Robin Roberts from “Good Morning America,” who is a breast cancer survivor, the article explained that the life-saving treatment she received 5 years before was responsible for her new diagnosis of myekodysplastic syndrome (MDS), a rare blood and bone marrow disease once called preleukemia.
The article goes on to explain that MDS is a potentially fatal condition that can be caused by radiation and chemotherapy, both of which Ms Roberts had in her initial cancer treatment. In medical speak, it is a “secondary cancer.” The author of the article, Steven Petrow, is also a cancer survivor who has received chemotherapy.
Secondary cancers now make up the sixth most common group of malignancies which is just another thing for me to worry about as if I didn’t have enough to fear and worry about. You need radiation and/or chemotherapy to cure the cancer you have now and it potentially gives you another form of cancer. So, one thing goes off the table and another pops right back on!! Cancer is a bitch one way or the other, even when it is relatively easy.
Having cancer has been an amazing experience on so many levels. I am still in shock and am still processing it at the denial level in so many ways. Like, not remembering to check off cancer in the medical history section of paperwork I have been asked to fill out at numerous doctor appointments. It is also amazing that you do not fall apart when you find out you have it. You just deal with it and take one step at a time to go through the process of fixing it so you no longer have it. You get rid of it and heal yourself with the help of the best team you can get.
Along the way, you count on your old friends and you make new ones. It is amazing that in the short time since May 25, I have met many amazing new people and have made some amazing new friends. My world has expanded and I learn new things and have gotten involved in things I never thought I would. Why would I?
I would like to share this article about a new friend I have met Carla Zambelli who also has a blog. We have a lot in common, I find.
My younger sisters Barbara from Rhode Island and Andie from Virginia came in on Sunday for a few days. We always try to get together for two nights without family once a year but this year they are here to help me heal so they extended the visit to 3 or 4 nights. We have a good time laughing and reminiscing, do crosswords and cryptograms, as well as trying to remember childhood events and the names of former neighbors and distant relatives.
When my neighbor Sharon came over to visit, it turns out she and Barbara both were in the same graduating class at Germantown High School. I think Sharon convinced Barbara to join Facebook!! Another friend from the old neighborhood may come over and visit tomorrow. Today we went to see our 91 year old cousin at the Abramson Center for Jewish Life in North Wales.
With all the laughing and reminiscing, I am focusing less on the aches and pains of recovery and more on the fun of having my sisters close by. I appreciate the calls, cards and notes from all of you as well. Thanks to neighbors, friends and family for such good wishes! I feel and appreciate them all. They make a real difference.
The last few days have been quiet recuperation at home with the strong support of friends and family via visits, emails, Facebook, comments on the blog, flowers and cards- all of which I love! Thanks to everyone for their good wishes. All things considered, I am feeling better than I thought I would. I took Percoset the first day but have only taken Advil once the second day and nothing since. The pain in manageable and does not require medicine.
There are 2 incisions- once from the lumpectomy and one from where they took out the lymph nodes. I have discomfort, not real pain. Isn’t the human body amazing? Someone cut into my body on Wednesday and by Saturday I am not in excruciating pain from it?
I am waiting to hear from the doctor about the lab work on both the tumor and the nodes to determine whether I will need chemotherapy. This weighs heavily on my mind, needless to say. The other factor I am waiting to hear is if there are clean margins from the surgery or if she will have to do further surgery to get them.
I have an appointment with Dr Dahlia Sataloff, my surgeon, on Friday, July 20. If I do not hear from her before, I am sure she will have the answer to these questions by then.
This morning I arrived at PA Hospital at 8:45 AM as requested. First, I went to get Women’s Imaging to have a needle put into the breast to point at the titanium marker to make it clear where the tumor was. Next stop Nuclear Medicine where 4 needles with radioactive material were given to me through my nipple with no anesthesia which interferes with the flow! This material was given time to drip through my body and find the sentinel lymph node. Note: Dr Brian Czerniecki at the Hospital of University of Pennsylvania was one of the doctors who did research on this process so that now only one to three nodes are removed instead of many which is a much more invasive and painful (though unnecessary) surgery. Final stop was the Surgical Unit where the anesthesiology nurse told me she has been working with Dr Sataloff for over 14 years. The all female team of five women in the OR was fabulous!!! Of course, I don’t remember much. I was conscious for a very short time. The next thing I know the told me it was all over!
After several delays because patients ahead of me had complications, I was taken into the operating room at 1 PM. Dr Dahlia Sataloff told Norman surgery went well and the lumpectomy and lymph node removal went as expected- no surprises!! Long time in recovery room with wonderful staff. In fact, every department had a fabulous staff: Women’s Imaging, Nuclear Medicine, Surgical Unit, and Transport. the people who I dealt with were great!!
Now I am home on pain meds ready for bed.
Thanks everyone for your good wishes and concern. They helped get me through the pain (needles in scary places, surgery, etc) and fear of today.
The good news is that all of my tests came back normal so I am ready for surgery on Wednesday. The bad news is I am so nervous and worried, even though everyone says this is as good as it can be and I know it is. In fact, I even say it myself and believe it to be true. I still feel nervous. What you believe and what you feel are obviously two different things!
Yesterday I had a consultation appointment with Dr. James D Kolker at PA Hospital. This is his title from the internet: Chief, Section of Radiation Oncology, Pennsylvania Hospital; Medical Director, CyberKnife. I cannot tell you how nice he was and how much time he took explaining to Norman and me about the procedure, the process, the what ifs, the alternatives, etc. He answered all my questions and more so. His resident and nurse did too. It was an amazing visit of over 2 hours! What doctor spends that much time with you today?? I was stunned and impressed. Not only is he knowledgeable and very capable but he is so kind and friendly.
My learning curve of information I need, but wish I did not know, is rising steadily.
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