A very special destination halfway between the White Mountains and the Maine Coast
Breast Cancer? Me? Really?
On September 28, 2006 my husband and I drove down our driveway just as a bull moose sauntered through the woods. We worried that he would walk through our blue maple sap tubing and yank a bunch of it down, but we were more worried about the mission we were on to save my life. We were on our way to Mercy Hospital in Portland, Maine where I was scheduled for breast cancer surgery.
The race was on to remove the tiny killer growing in my left breast before it shed even one cell to another part of my body.
I was 60 years old and I did breast self-exams. I had breast reduction surgery at age 40, one the of benefits of which was that I should be more easily be able to detect an abnormality (once I became accustomed to the new-normal of my surgically reduced breasts and the accompanying scar tissue). I had read the statistics that, assuming I should live to age 90, my risk of getting breast cancer over my lifetime was about 14%. That means that an average of about one out of every seven women will get breast cancer over a 90-year life span. I was convinced that I would never be a part of that 14%. I had no family history of breast cancer and I never smoked. I had diligently checked out the rumor that using underarm deodorant or antiperspirant can cause breast cancer and found that the National Cancer Institute had ruled in 2002 that there has never been any scientific basis for such a claim. Hair-dye was also suspected as a culprit and determined to be a non-factor in breast cancer. Dietary studies were confusing and ever changing.
Earlier that summer, I received a letter reminding me to schedule my annual mammogram, a recommended practice for all women over 40. I postponed making that call for no other reason than I told myself I didn’t have time. Not so much time for the mammogram, but time to make the phone call. I had traveled to Nepal in April and began a series of Hepatitis shots at that time. The last shot was due August 14 and I kept that appointment. While I was at my PCP's office the receptionist pointed out that I had not made my mammogram appointment. A cancellation had just come in and she suggested I step across the hall to the mammogram dept. and get it done. I complied. I got a call to return for another mammogram. I was sure it was because I had breathed or jiggled and it would show nothing. The second appointment was on August 28 and I was annoyed that I had to return and was assuaging the inconvenience by promising myself a spin through the Maine Mall afterwards. The second mammogram showed something, and before I left that day I also had an ultrasound, which conclusively showed something… very small, about the size of a pea. The ultrasound also confirmed that the tiny growth was not a cyst because the sound waves pass right through a fluid filled cyst. A biopsy was scheduled for Sept. 8. Rejeanne, the nurse in the biopsy unit at Mercy Hospital, rubbed my ankles as they numbed my breast and inserted a needle to take 6 samples of my tiny pea. I was calm and relaxed, knowing with absolute certainty that the growth would prove benign. I was also focused on our daughter’s wedding, which was coming up two weeks later. My primary care physician called me at home on Sept. 12 with the news. She apologized for having to give me the news over the phone but she knew I would have to drive 50 miles from my home and she wanted me to know – and act – as soon as possible. I had Breast Cancer! I couldn’t believe it. Not me! Not then… with our daughter’s wedding only 12 days away. Three days later I was consulting with a breast surgeon at the Mercy Hospital Breast Center. Ironically, the consult was on the exact day of the 20 year anniversary of my breast reduction surgery. She told us that a tumor the size of mine has been percolating for at least five years since the first abnormal cell separated until it finally reached a mass that was detectable in a mammogram. The surgeon agreed to schedule the surgery after the wedding, but with an insistent warning that we did need to act soon. She proposed a day-surgery lumpectomy, the most common form of breast cancer surgery, during which she would remove the tumor, some of the, hopefully, normal tissue surrounding the tumor as well as several sentinel lymph nodes to determine whether any cancer cells were breaking off and traveling away from my breast.
The wedding was spectacular, and I was a very proud mother-of-the-bride, but there was a shadow of apprehension over me that I tried hard to hide.
On my calendar September 28 is marked “I saved my life today”. A bull moose crossed our path at about 6:30 AM, surgery was at 10 and I was home in my own bed, groggy and medicated by 4 PM.
Six days later on October 4, I met with my surgeon to hear the results. Both the surrounding tissue and the sentinel lymph nodes were clear of cancer cells.
Radiation Therapy (five days a week for seven weeks) was scheduled and anti-hormonal medication for the next five years to reduce the risk of reoccurrence, but at that moment I had been declared cancer-free, my daughter was home from her honeymoon in Cabo, I had a new son-in-law, and there is one huge bull moose roaming the woods near my home.
My message to all women and all men who have women in their lives (and men can get breast cancer, too) is to get your mammogram. It saved my life! It could save yours.
Archie Campbell and I have been fast friends since high school, weathering college, job searches, relationships, marriages and divorces together. In 2006 we faced our greatest challenge when each one of us was diagnosed with cancer. After surgery we both were told that the next step would be radiation therapy. By sheer coincidence, we were scheduled to undergo the grueling two-month “standard of care” treatment at the same time.Our daily emails describe the ups and downs and the encouragement we offered one another. There are good days and bad days, instructional material and humorous anecdotes. My journal gives a concise description of my fight with breast cancer. This book is about cancer, the process, the medical community, friendship, but most of all, it is about survival.
Our book is available through Lulu Publications, 2007. 120 pages, 6" x 9" format.
CHAPTER 2: Stage IV Metastic Breast Cancer
November 20, 2013
I did what I was told after my 2006 battle. I kept my annual oncologist appointment every November, and approached it with bated breath until I was 5 years out. Then I relaxed.
In June 2013 I began complaining to my primary care physician that I had either pulled a muscle or broken a rib. Without so much as an xray (because there isn't much you can do for a broken rib except live through it while it heals) I was handed pain killers and sent home. The pain did not abate and I was having trouble sleeping. By this Novewmber the pain had been going on for months and it was time for my oncologist visit.
I have a wonderful oncologist and her nurse practitioner is thorough, knowledgeable and has a great sense of humor. I was telling her about the events of the past year and mentioned the rib almost as an aside. She looked me over and said she'd like to send me for a nuclear bone scan. She had tears in her eyes as she wrote the order and I attributed it to our previous conversation about the odds and ends in my life. I went for the scan a few days later. A PET Scan followed.
Now we know: I have Stage 4 Reoccuring Breast Cancer that has metastisized in bone. There are four areas of concern: my 9th left rib, my left hip and two faint spots on my sacrum and one vertabrae. The rib has been painful and the hip is weight bearing, so those were the areas of greatest concern.
My treatment plan will by palliative rather than curative with strong emphasis on extending the length and quality of my life. My doctor says I may just get 30 years if we are diligent.
I began with Radiation Therapy on the rib and hip - 10 daily treatments that were completed just before Christmas. The next step is medications: estrogen blockers, bone strengtheners and pain management. I am adding Reiki, massage therapy and acupuncture to this.
The initial diagnosis was a shock, but I am settling in to what I need to do. I am being more attentive to my nutrition, exercise and smelling the roses.
JUNE 2014: Six Month Update
After the initial radiation therapy I had to recover from the burn I got from it as well as all the other malaises that accompany radiation. I had been on a steroid from the day of diagnosis and I have weaned off that. At three months they did another bone scan and both major tumors had significantly shrunk. Meanwhile I have religiously been going for acupuncture and am trying to take the most useful pieces of both Eastern and Western medicine into account. And Art and I have both been reading everything we can without confusing ourselves too much. A significant read was "The China Study" that advocates a plant-based diet. The "Forks Over Knives" diet is just that: no meat, fish, chicken, eggs, dairy or oil. We both started it in May. A whole new way of eating, cooking, shopping and thinking. I was concerned that Art's meat-and-potatoes habits would make this difficult for him, but he is not only cooperating but enjoying this new health-style... and the house smells terrific most of the time as I cook every day. Our plan is to ease off caffeine next. So, we will keep you posted.
June 2015: UPDATE: One Year Vegan
I am half way through my second year since the diagnosis of Stage 4 metastic breast cancer... and I am still here. My scans in April showed the original tumors but no active cancer anywhere. I asked if this is what is called remission and the doc would not commit to that. But I am happy! We've been on our vegan diet for a year, I take my estrogen-blocker faithfully but it does creep up on me with muscle and joint weakness. When that happens acupuncture alleviates my symptoms and life goes on at the pace I have become used to.
I am also doing the Beachbody program (I know, I know..."Beachbody" is not a term appropriate for a 69-year-old body no matter who you are). Nevertheless, I use their vegan Shakeology shake as a meal replacement every day (dense nutrition) and repeatedly do the 21 Day Fix Exercise and Nutrition Challenge.
I feel great, have lost weight, appreciate every day and the support system that surrounds me. Art has joined me in this vegan journey and has lost 50 lbs. and his bloodwork no longer registers pre-diabetic. Our favorite meals are Lentil Loaf (made with carrots, lentils, oatmeal and walnuts -- tastes a lot like meatloaf) and Vegan Shepherd's Pie.
UPDATE: June 2016
My six-month scans continue to come back: No Progression. I'm 70 now and it's been ten years since I was diagnosed the first time. The shock has worn off and the reality is just that: REALITY. I have acupuncture every 2 weeks (Maureen Tsao is a miracle worker), eat a vegan diet (3 years now) and supplement that with vegan/almond milk Shakeology (dense nutrition drinks). I am slower now, but I also have arthritis. Art and I have a wonderful life and our three grandchildren (Ryan, Matthew and Margot) are reasons to keep going. We rent our cottages, make maple syrup in the spring, take care of our 120 acres and serve on the MSAD55 School Board. Our days always include a game of Scrabble, usually a good movie and Art reads aloud to me while I work on my watercolors. Life is good!
UPDATE: Halloween 2016
Today is Halloween and once again we drove to the New England Cancer Specialists' offices to hear the news about the bloodwork, CTscan and nuclear bone scan I had a week ago (and have every 6 months). I always approach this journey saying I am not expecting any surprises, but there is a nasty little knot in my gut that always accompanies us. And there were no surprises. Rather than using the term "No Progression" Dr. Weisberg used a new term "Dormant Cancer". I like this term a lot.
This year Art's daughter has joined the sisterhood of survivors and, although we don't communicate it to her well, we are proud of her strength and resilience.
So Happy Halloween to everyone.
UPDATE: June 2017
My six-month scans were last week. A boring day as usual: arrive at Maine Med to drink the CTScan contrast (which reminds me of Koolaid). A nuclear injection and then waiting for both to settle in while flipping through the tattered pages of old "People" magazines. CTScan and then the Nuclear Bone Scan. Six hours after arrival I can go home to more interesting activities. BUT the good news is that they saw no change at all and the word "DORMANT" still holds. We relaxed our vegan diet about 6 months ago and have more energy but we still avoid beef, dairy and soy. Acupuncture every three weeks and Shakeology every day.
UPDATE: March 2018
Scans once again... the day I have to go in is a two-edged sword. First, I hate "wasting" the time, especially during our busy maple sugaring season. Second, I get a day to myself between injections, scans and waiting rooms to explore Portland. I wanted to find the Scarborough Holy Donut but was advised it was toward the marshes and might be in a flooded area. I satisfied myself by chatting with fellow scan-takers and reading. I had to wait a week for the results, but was confident all was well, and it is. No changes, still dormant... the doctor even alluded to the fact that given enough time my bones may return to normal. I think she is talking decades not years. But I'll take it! For those who have read "Radiation Buddies", my co-author is also doing well.
UPDATE: February 2019
The other shoe was going to drop at some point and it has. In December our next door neighbor's house burned to the ground in the pre-dawn hours and I yanked my right side getting up into our truck as soon as we saw the flames. The pain mimicked the pain I experienced when the first metastic breast cancer tumor was discovered in the left rib, so my oncologist sent me off for the usual nuclear bone scan and CT Scan. The pain was not cancer as suspected, but a broken rib. They did however see five new small cancer lesions in bone, nothing in soft tissue. So we're upping the game with my meds. I continue on an aromatase inhibitor and they have added Ibrance hoping to stop the progression and maybe even heal the lesions. They have to watch my blood cell count so I am having blood work regularly. Since I have to travel to Portland it means exploring Goodwills and my other favorite haunts and so far we haven't had a snowstorm to interfere. The new med is being paid for by grants since Pfizer feels their miracle drug is worth $11,000 a month. You will see it advertised on TV so we know where some of that money is going. But this isn't a bitch session. Just wanted to fill you in.
Reading a new nutrition book: "The Plant Paradox" by Stephen R. Gundry, MD.
UPDATE: January 2020
I changed doctors this past summer. The reasons why are not worth elaborating here. My new oncologist has continued aggressive attacks on the cancer cells with some impressive results. I have been on an injection every 28 days called Faslodex (fulvesterant) in conjunction with Afinitor (everolimus) tablets daily, both covered by grants from the manufacturer. They are, however, chemo drugs and as such have knocked out my immune system. Just after Thanksgiving a simple cold virus blew up into a respiratory infection that landed me in the hospital for 5 days gasping for breath. We will never know for certain what the cause was but it appears to be an allergic reaction type of pneumonia caused by the Afinitor. To add insult to injury, the antibiotic I was given for the pneumonia caused yet another allergic reaction. So, as maple season approaches, I am finally feeling better but weak after so many weeks down and out. There is light at the end of the tunnel and a new protocol for the cancer on the horizon. I have a terrific new oncologist whom I trust. Stay tuned... good things are coming.