My Cancer Story
At age 39 I found a lump in my left breast and so the journey began …
One night in late 2005, I was out at a local club having fun dancing and sharing conversation with friends when I noticed that my left breast appeared to be swollen. My concern was not immediate as my left breast was always the "bigger" breast and I wondered if I was close to that time of the month. Within a week I had a palpable lump and within the next month I was at a local cancer center having this checked out. The cancer center actually ruled that the mass was fibrocystic tissue but noticed another one that was highly suspicious. After a fine needle biopsy, it turned out that the cancer center was wrong and that the large mass was not fibrocystic tissue but a malignant mass roughly 4-5 cm in size and the other suspicious area was cancer as well. Then came the first surgery, excisional biopsies, and I was informed that I needed a left mastectomy.
As I scheduled the surgery I insisted on removing the right breast too because I intuitively felt it had cancer in it as well, even though a scan ruled that breast as clear. After my surgery in April 2006 I discovered I was correct and that the cancer was indeed in the right breast and contained many microscopic tumors that the scan could not pick up. I was given the horrible news of 44 nodes positive on the left for cancer and 8 of 38 on the right, the highest nuclear grade tumors, estrogen and progesterone negative, her2neu positive and staged at a 3b - 4. This was pretty much a death sentence. I was given less than a 15% chance for survival with all the treatment they could offer.
Additionally, a second opinion on my pathology from the number one rated Cancer Center for Breast Cancer in our country, MD Anderson - Texas, showed that I had four different cancers in my breasts. The head of Breast Pathology conferred with other pathologists and reviewed medical journals and literature to attempt to find any case similar to mine but could not find another case like mine within the U.S., nor out of it. She was amazed that I was still living.
From the time I found out I had cancer I had been following an integrative Complementary Alternative Medicine (CAM) protocol of an organic diet/candida diet, acupuncture, chiropractic care, lymphatic drain massage, reiki / energy work, vitamin and herbal supplements, detoxifying with coffee enemas, daily juicing of vegetables and had removed all chemicals from my life and home to unburden my body of the toxic load. I was screened by Biomeridian (EDS) and utilized thermography to monitor progress. I researched constantly and made a decision to go into battle for me and my family, as I had a five year old son that I was going to raise; I was not ready to give up my fight and surrender my life.
I tried the chemotherapy they prescribed for me only to realize that I could not tolerate it and that the side effects brought me close to death. I refused radiation that was recommended for my entire chest area and axilla (under arm) region. I knew then that I had to choose my path and I chose to do the CAM therapies to keep my immune system strong and I incorporated a targeted therapy of Herceptin. All of my doctors felt that I would lose my battle within months with virtually no chemotherapy (which is the standard) and just a targeted therapy. Unfortunately they were not too supportive of my chosen integrative (CAM) path as treatment.
By October 2006 I was scanned again and told that I had metastasis to my rib and clavicle and I was encouraged to go on aggressive treatment to extend my life. I did not believe this to be true since my rib area was bothering me tremendously after surgery and my mediport was placed right under the suspicious clavicle. I felt this was likely to appear as "new activity" since my scans were prior to surgery. I followed up with another Oncologist (second opinion) and we did a PET Scan and a CT Scan (thin-slice) to attempt to rule out the metastasis. I was correct and it was bone healing over / together and not busting apart from cancer. I stayed positive and coped with the side effects of my targeted therapy and prayed daily for strength and a miracle.
As of 2008 I had had roughly seven sets of scans since my original surgery, expecting the progression I was warned about; yet I have baffled doctors each time. I decided to come off of my targeted therapy of Herceptin in October 2009 due to myriad side effects; I felt better with each passing week. Then I was experiencing a lot of hip pain from August 2009 - 2010 and because this pain was coming and going and not consistently getting worse my medical team felt it was just "aging" or some issues from previous treatment of Herceptin. In July 2010 my tumor markers began to rise and I was in even more pain with my back and hip and saw a Chiropractor that wanted x-rays of the lumbar and pelvis and Radiology saw what appeared to be a lesion on the bone that was highly suspicious for metastasis. I was at Moffitt Cancer Center scanning within a few days and still the tests were inconclusive. We then shot regular x-rays of my hips, femurs and pelvis and all looked o.k. besides that the lesion was still not imaged well enough to determine anything. We then ran an MRI with and without contrast and it was confirmed that there is new evidence of cancer. It was a sad day and absolutely frightening for us as a family to find this out; accepting that now it is metastatic cancer. I was officially re-diagnosed August 2010.
I re-grouped quickly and met with my Oncologists and started back on the targeted therapy of Herceptin and incorporated Zometa (for bones). I was responding very well to treatment and my tumor markers were almost in the normal range in just 30 days! About 3 months later my tumor markers were rising again and we realized I was becoming resistant to Herceptin and we decided to incorporate Tykerb, an oral targeted therapy that I would take daily. Wow was this a hard drug to tolerate; it took a lot of tweaking integratively to make this tolerable and manageable. I am also doing Meyers Cocktails 3-4 times a month to help tolerate the drugs that I am taking and give my body support to cope with the cancer.
In September 2011 my tumor markers began rising yet again and my liver enzymes were quite high, dangerously high. We did some diagnostic tests and discovered that I had some significant progression in the liver and decided that Tykerb was no longer effective for me. My Oncologist decided to put me on Navelbine and Herceptin. This drug combo seemed to be working as my blood work was improving at regular intervals. In January 2012 I had not been feeling well at all and could not really digest foods, therefore I began seeing specialist to see what was going on as my Oncology team felt I was doing well due to my blood work / labs. I saw a surgeon for my gallbladder which seemed inflamed and they reviewed scans and felt it was my liver effecting the gallbladder and that the liver was not doing well and had serious tumor progression.
I was hospitalized late January 2012 at the Cancer Center and my liver was indeed not doing well and I was jaundice. I was scheduled for a biliary drain to try to relieve the liver and save my life February 1, 2012. I ended up with two drains, one for the liver and one for the gallbladder which went through the organs and out externally. To this day I still have the liver one. I also battled a bad infection in the drain that went systemic shortly thereafter and was re-hospitalized in March; I was on Gemzar and Herceptin and not doing well. After the discharge from the Cancer Center in March I steadily went down and went on Hospice in late March; my liver was engulfed with tumors. In April 2012 as family and close friends came to “say good-bye” I could barely lift my head from the bed and had lost over 45 pounds. I had been unable to eat for months and had a bedside commode. It was a very tough time for me and my family, especially my 11 year old son. In April 2012 I had made a video for my husband to release to the N.B.C.C. after my death to help them advocate for the release of compassionate use drugs for women with breast cancer. It is quite common to find women dying in bed, as I was, with a drug pending approval at the FDA that may help save their lives but is never made available to them. We decided to release the video and post it on YouTube and pray for the best, as there was a drug pending approval for me, Pertuzumab by Genentech. It was a media whirlwind once the video hit and went viral. People from all around the world stepped in to help and made calls, sent emails and faxes to the drug company and the FDA on my behalf. We begged for my life and the out-pouring of support was amazing to say the least. Within four days, after extensive media coverage globally, I had an answer from Genentech of YES - we will extend this drug to you and the FDA’s blessings to do so.
April 27, 2012 was my first dose of the drug Pertuzumab, which would be run with Herceptin (the sister drug that I had been on for years). I was carted in for treatment in a wheelchair and could barely ambulate. Within 6 weeks (two treatments) I was ambulating, cooking lightly, able to spend time with my son, eat a bit and bathe independently! My tumor markers were decreasing rapidly and I was feeling better and better with each week. This was nothing short of a miracle! Within 3 months roughly my tumor markers were in half and I was eating up everything I could. I had dropped down to a dangerous weight of 118 pounds but with the help of juicing for my nutrients that I could not eat, digest and process I am doing well and finally gaining weight. Today I am still under treatment of Pertuzumab and Herceptin and doing well, miraculous some would say. I spent 4-6 weeks dying on Hospice, making videos for my son, recording books for him, filling out cards for each future birthday and special event to celebrating Mother’s Day, Father’s Day, his Fifth Grade Graduation, the summer of 2012, seeing him back to school as a Middle-schooler in August 2012, my husband’s birthday in September 2012, my Anniversary with my husband September 2012 to my son’s birthday coming up in just weeks in October 2012. WHAT A BLESSING! My favorite time of year is here, September – December and God willing I will be here for Thanksgiving (and cook up a storm), my birthday in December, Hannukah and Christmas! My family and I were given a gift from God with a lot of help from His children all around the world – Thank you!
I have done a lot of soul searching and realize that every disease has an emotional connection. Years ago I took many classes and sessions in Reiki and became a Reiki Master too. Recently, I began Jin Shin Jyutsu, a form of energy medicine and love it! I also have taken a lot of Core Health classes to help release the emotional trauma that may be contributing to me and my body holding on to cancer. I feel true progress is being made. I see the beauty in each and every day and why today is called the “present” because it is certainly a gift that I will NEVER take for granted. All my issues with family and friends have melted away as life is just too short to hold grudges or animosity towards anyone but especially the one’s you love. I learned to forgive completely and accept that we are all only human and will make mistakes and sometimes hurt each other unintentionally or regretfully. I LOVE life and celebrate it daily.
Additionally I spend much of my time helping others with cancer as far as diet, alternative options and the power of positive thinking and prayer. I continue to follow a very integrative path of my CAM protocol that I have devised from all of my research as well as healthy living and targeted therapies.
I have founded a non-profit organization for women with cancer called H.O.P.E. - Health, Opportunity, Peace and Education. We are a non-profit 501c3 organization focused on reaching out to women in our community with various forms of cancer and helping them with the financial burdens of treatment, navigate the healthcare system, locate resources in our community and gain some emotional support. The website is www.HopeSupportGroup.com.
And so the journey continues …
Written by Darlene S. Gant