Anne-Lynn's Story
April 1999
May 1999
June 1999
July 1999
After July 14, 1999
Five Years Later (2004)
Recipe for Difficult Times
2007 - Cancer Revisited
March 2012
July 2012
October 2012
November 2014
One of the last things I remember happening in early 1999 was the passing of King Hussein of Jordan - everything else was a blur. Why? Because in the scheme of things, nothing else mattered - I found a lump in my right breast.
My mind began reeling with the possibilities: the what if, why me, what am I going to do? My folks were gone, along with many relatives and friends. I called my dearest friend of 20 years and told her.
Then, I scheduled my mammogram.
I had the mammogram and was taken back in for another mammogram on the tip of the tip of my right breast - talk about pain! After the mammogram, I was told I needed an ultrasound for a clearer view. At this point I began to think the worst diagnosis was possible. But I wanted to know then: Why not an ultrasound in the first place? Instead of scheduling it for two weeks out, I told the radiologists let's go for it now. So I waited an hour - hey, I wanted to know - keep the ball rolling.
I stayed for the results of the ultrasound, even though my friend was waiting to meet me at a restaurant. Another hour later, I heard what in my soul and body I already knew - I had a suspicious lump in the upper part of my right breast. The radiologist was kind and considerate - using the ultrasound pictures, he pointed out and explained things to me.
I left, scared and frightened - 3 hours late to meet my friend. By now I was thinking the worst - breast cancer. So far, this seemed like my longest day - but this was just the beginning.
Next step - biopsy.
After talking quietly to nurses, patient advocates and a few close friends, my list of surgeons narrowed to two. Then noticing the consistency of positive comments for one, I chose my doctor for the biopsy. He said we could schedule it in a week, but fighting on, I said how about now? He answered that if I could wait a few hours, he would do it.
After the biopsy, the surgeon felt 95% sure I had cancer, but I would have to wait a week for the lab results.
Music helped me through: I was in a performance of Mendelssohn's great oratorio Elijah, about a prophet of God who remained strong, in the face of ridicule and persecution.
The results would come on June 2, 1999 - the day before an annual performance of "Sentimental Journey," at the Weinberg Center, for which I selected music and coordinated rehearsals. With this show, my musical friends and I have raised funds each year for the Thelma Gross Music Scholarship Fund, named in honor of my mother, who had been a Frederick County music teacher for 30 years.
At this point, very few people knew what was going on with me. I didn't want it to go any further until I had the results. In the meantime, I was reading, and also had help from a friend who was on the internet. But, even though I was gathering information for procedures, my thoughts and emotions were all over the map: Would I make it? Is this really happening?
All around me, my world seemed to be crashing. This is when I needed to talk about this with my closest friend and also to my adopted "mom," who was a registered nurse. Having these strong people around me was imperative. When I was upset, they never took it as a personal affront. I also talked to my mother in heaven, in whose name we were rehearsing, and sought guidance.
We were approaching the end of May and I'd had two consults, a mammogram, an ultrasound, and a biopsy. My mind was a whirlwind: from denial to the worst.
Fortunately, rehearsals were going on for the show. Singing has always been an integral part of my life, and doing the songs of the 20's, 30's, and 40's was, for me, a magical, musical experience.
4:30 pm: I got the call from the surgeon: I had breast cancer. Even now, the shaking, weak feeling I had revisits me. I got information for pre-surgical tests and scheduled an appointment to make my decision. I had rehearsal that evening - a Thursday, I believe.
Looking back on all this is still difficult - almost as though it is happening now.
June 3, 1999
The next night, June 3, was the "Sentimental Journey" show. What energies were going through me - from being excited about the show to being anxious about the future? Only one person in the show knew of my situation; I simply wanted the show to be the focus - wanted it to go well - my friends and I had practiced for months. And it did! However, I gave the performance of my life - I knew it might be my last.
After the show was over, I continued my fight in earnest.
I read all that I could: along with information from the American Cancer Society, I did further research on the value and uses of vitamins and herbs, as well as nutrition. Friends helped by garnering the latest information form the internet. I also spoke with doctors and specialists, taking notes, names, and ideas.
Getting out to walk helped me think things through, but thinking rationally became hard, if not impossible at times. Sometimes it felt like there was no foundation to hold me up. From nowhere, shaking from the depths of the soul take over, along with bouts of crying.
I learned to simply get through the moments - the why me's, what if's. But, these thinking choices didn't happen overnight - they evolved.
June 4-14
Days went by so slowly and yet so quickly. Still searching for doctors' names - from cancer surgeon to possibly a reconstructive surgeon, I also talked with patient advocates, nurses, and other doctors. The point is that I wanted to be comfortable with who was doing the operation. After interviewing doctors, I found a fine surgeon. After talking with him and learning that I had the option of removing one or both breasts, I decided to remove both.
After asking for opinions, next I located a reconstructive surgeon. I interviewed him and together we decided that if possible, I would have the reconstructive surgery done immediately after the double mastectomy. Finally, after asking around, I also chose my anesthesiologist. I then had a choice of two surgery dates, Wednesday or Friday. I chose Friday so that I would have several recuperation days before a weekend staff took over at the hospital. Pre-surgical tests were scheduled and the date for surgery was booked - July 14, 1999.
After the double mastectomy and reconstructive surgery, I learned of my Stage Three prognosis and the journey to come.
Because I live alone, I stayed with a dear friend for ten days, who took care of me. I was not used to depending on others for this much help. I had to rely on others and pray that they, with God's help, would get me through.
I left the hospital to go to my friend's house with four drains in my breasts. I did light exercise - walking slowly in the back yard. With only one usable hand, I found that it took me 15 minutes to even make a sandwich.
At this juncture, I also had to fight to find out about follow up treatment. I had to become knowledgeable quickly: the clock was ticking; my investigations took one month and the clock was ticking. I was supposed to begin high potency chemotherapy 8 weeks from the surgery.
After discussions with top doctors and oncologists, I found two oncologists, who like me, were open to alternative treatments integrated with standard treatment. Vitamins and herbs became a regimen. Chemotherapy looked imminent, so I got things lined up for the treatment.
The first step in chemotherapy was minor surgery: a catheter was placed on the left side of my neck, connected to a large artery. At this point, reality really hit me - because I was in Stage Three, I would be given some very high potency drugs. Hair loss, nausea - so many challenges ahead, it was overwhelming at times. What did I do to deserve this?
At this point, my life took on a new shape: I gave away my upcoming auctions to several auctioneers. I walked each day, took vitamins and herbs, and ate balanced meals - natural foods. My life had been altered, but friends were and are a constant.
I went to a beauty parlor after my first treatment; I thought it wise to cut my hair short before it fell out. I found two wigs - this was so tough - just the thought of being bald. After the third treatment, I had no hair. It’s hard to say how vulnerable I felt. My thoughts were sometimes nearly out of control, but I plowed on, remembering to stay focused, even though it was not easy to do.
Living from day to day, then week to week was my focus. Meanwhile, I recited the words "The Body in Me is Cancer Free" like a broken record. With each hit of chemo, I deliberately pictured Pac Man, thinking, "Pac Man, do your thing - kill the bad cells!"
Each week I had blood test to monitor my white blood cell counts. My final chemo treatment was a celebration - the nurses and my oncologist had become my friends, who helped me keep reality in check and rooted for the best.
After several weeks, my next step was radiation. I had my radiology oncologist confer with my reconstructive surgeon on what needed to be done. Teamwork is important, especially when it involves your life! Next came 28 treatments on three areas of my right breast. Each point was marked on me and setting up the equipment was precise and intense. Radiation - day in, day out.
Time still crept along, but I was on the other side of the mountain - hooray! With friends still hanging in there - keeping in touch - I began to feel some strength returning. I was told not to push it - to keep a low-stress life-style: nature needed time to heal my body.
People ask me: How did you get through the surgery, the chemo, the radiation?
My strategy was to take it one step at a time. Incredibly, it works.
There are dates that are still very strong for me: July 14, 1999, mastectomy and reconstruction surgery; September 7, 1999, surgery for installation of catheter; September 9, 1999, first chemotherapy treatment; January 28, 2000, last day of radiation; February 14, 2000, began taking Tamoxifin. July 14, 2004, my fifth anniversary of being cancer free!
In between the memorable dates, I set mini-goals and kept my focus on each one, one at a time. I consciously worked to acquire a stable life of thought processes, emotional control, and faith. I learned I had to go through the process - deal with it, work it out for myself, look at the whole picture before making a decision. Fortunately, I had parents who gave me wisdom and taught me the value of independence and stability. I began to take the bull by the horns and grow stronger, taking control of my existence.
What did I learn through all of this? I learned that work and organizations are not my number #1 priority; the value of living is. I look about me now and see people caught up in a maze that offers no time for what really counts.
Now, when I hear ads about how we don't have time to cook, or don't have time for a headache, I want to scream: hey, these are important - cooking feeds the soul as well as the body; headaches are a warning to take time out. Make time for these things and make time to keep in touch with friends—no more, "Has it been that long since I’ve seen you?"
Time is short. But life can be sweet, we just need to taste it. Instead, help someone across the street, open a door for someone, let someone go ahead of you in the grocery line (they have 2 items and you have 10!), say thank you, and take time to pray. For me life is about friends, music, and low stress work that I love. I have found the recipe that works for me:
Recipe for Difficult Times:
God
Family and Friends
Information
The Ability to Scream - throw things! Get it out!
The Best Doctors
Inner Strength - Faith
Mix well. Then, stand up strong, and even when the knees are weak and the body is weak, walk forward.
When my annual blood test results were read, my CA 27 29 numbers were escalated - above normal markings. The light was on, so next step: PET Scan, MRI, Bone scan. Being stage three, my chances of metastasizing were strong. Still, with all this, I was a bit set back - almost felt as I did in 1999. Got the results: it had hit in my bones - so, on to research. I learned that there are three possible areas that were from Breast Cancer: the Liver, Lungs, and in the bones. Oh my God - help me.
After my Oncologist appointment, I talked with Jane Garvin, nurse at FCC and champion leader at my Breast Cancer support group - she concurred with the Oncologist in that immediate action be taken, but treat this as a chronic illness; most importantly, stay on top of this!!!!! This was were the Anne-Lynn Gross Breast Cancer Resource Center came in handy. Research on options definitely was at the forefront!!!
Along with vitamins and herbs as my continued daily routine came aromatase inhibitors - Femera, which lowered my nubers for awhile, then it was not effective. Next was Aromasin - for me, it didn't help at all. So, chemotherapy was next, a drug called Xeloda. It was Fall, 2008, my numbers were at their highest ever for me, and the Bone Scan showed further 'spots' in the bone - so, onward with the chemo - this one was available both in infusion, or pill form. I chose pills, after learning that either way, the effect was the same. My chances that it would help me was just under 40%. I did research on this drug - it was approved by the FDA in early 2000's. Needless to say, these months of uncertainty were challenging, to say the least.
By the first of January, 2009, I got the latest numbers: they dropped some 29 points---HOORAY!!!! I was one of the 'lucky' ones. Now the side effects have included fatigue and my hands feel like a sprained elbow and hurt when I hold a glass of ice water, but hey, if the drug is working--I have spoken out about this and, through research, have learned that more help is needed for those who are of the next level of challenge--we have to keep plugging along and keep educating folks about metastatic Cancers. Friends and acquaintances have prayer lines going--the positive energy is invaluable. By the way, my numbers again dropped in February and on March 2, 2009, I turned 62-- Whoo Hoo!!!!!!!!!
Since 2009, I have had three birthdays. The first being "63 - The Best to Be" as my slogan for the year 2010! Next in 2011 came 64, my numbers were still good with Xeloda and my new slogan was "I'm 64 - who could ask for more?" Then in the summer my numbers shot higher and the Xeloda was becoming less effective. My oncologist decided to put me on an injection once a month called Faslodex. I was on this for four months and it did not prove effective. This is part of the practice of medicine, I guess. So in November of 2011, after a CAT scan the cancer had spread from the bone to the liver. It was decided that I needed a liver biopsy to see if the estrogen positive had shifted to estrogen negative. I learned that in approximately 20% of cases there can be a shift from one to the other. The results were no change for me which was a blessing and a Christmas gift given me in early December. On December 29 I began infusions of Taxol - once a week, three treatments. Then I took a two-week break until the next three treatments. I had a blood test done after the first treatment, my numbers went up, but I was told they should level off and go south as treatment continues. My second test proved the leveling off effect. So presently I'm on my fourth treatment and feeling better than I did in December, both physically and mentally. I have had my moments of doubt and mortality issues, but folks this is normal. I thank God for all the good friends, support, medical help, and strength of mind. Today, March 2 is my 65th birthday and my new slogan is - "I'm 65 and alive!!" Maintaining a positive approach to all the challenges that have been placed before me is the way to deal 99 44/100% of the time. We all have varying challenges in our lives, and the road is not easy, but it is all in how we approach the situations. One side effect I am dealing with from the chemo is the loss of my hair. You know what - it ain’t half bad being bald. And the feeling in the shower-ooh la la!! Pity or party, which would you choose?
April 17 - I had my CA 27 29 test. It was over 550. On April 20, had a CAT scan which showed that a couple of spots in the liver had doubled in size, so the Taxol stopped working (didn't work for Jan-Mar). Put on another chemo called Halavan starting May 3. This stuff was a lot stronger. Then, I had another chemo treatment on the 10th, the next day on the 11, a shot of Neulasta. This was given to help with the white blood counts. Well, two weeks later, started the next treatment of Halavan. Following week, I couldn't, because I had gotten poison ivy and they had to treat that. Then I started treatment again on 6/6 of Halavan, then on the 14th, saw Dr. Hamden. The Blood test that I had on 6/13 came back with my numbers really down, it was down to 342. The Neulasta shot really knocked me out. So, the decision was not to do the shot. Then had a few weeks off. Started treatment again on 6/28 of Halavan, so here we go again! Side effects from Halavan are neuropathy for me, and you can hear my speaking voice has changed.
I've had 3 blood tests in the last few months, the most recent was last week. I declined the Neulasta shot, and with a mix of herbs, my white blood count is normal! They also checked my CA 27 29 levels - they're down to 69 - 30 points above normal. This is the lowest it has been in at least 2 years. People have asked me what I'm doing, and here's what has worked for me to keep my white blood counts normal. I'm not a medical professional, this is just based on my research. I take 470 mg of Astragalus twice a day, at breakfast and at lunch, 400 mg of Echinacea once a day, and 1 ml/day of Ligustrum (liquid) divided up 3 times a day (about 14 drops).
Sadly, Anne-Lynn lost her battle with cancer in November 2014.