May 19, 2012 - Posted by tamilb - 24 Comments
Where there is light, there is hope. (My husband Mike took this picture on a fogging morning here.)
Sorry I haven’t posted in a while. To be honest, I’ve been in turmoil this week. I learned that the chemo I was on (Halaven) is not working; my scans showed a slight progression. As I mentioned, I’ve been having pain in my abdomen, where it has spread, and was hoping it was because it was killing cancer cells. Well those hopes were shot.
I got on the phone with Mark Roby, a fellow cancer survivor who is also a physician assistant and naturopath who has been through his own uphill battle with the medical system when he was diagnosed with advanced liver cancer. He has been advocating for me to get my tumor tested via molecular profiling and chemo sensitivity testing, in which a lab test the cells to determine which drugs will most likely shrink the tumor, kill the cancer cells, and give patients the best outcome. Actually, he’s been trying to convince me to do this for some time, but I just wanted to give this chemo a chance. A while back, I had also talked with Dr. Gwen Stritter, whom I met at the Annie Appleseed conference, who recommended chemo-sensitivity assays.
When I learned my latest treatment wasn’t working, I was struck by the randomness and brutality of cancer treatment for metastatic patients. They don’t really know if something will work, so they rely on statistics (and you know how I feel about them) — what worked or didn’t work for a group of people to make an educated guess. In the meantime, you are suffering the side effects and praying it will work. The trouble is; cancer is such a complex disease and what works for one person may not work for the next. Everyone’s cancer; everyone’s body – is different.
So I started my research, and I put out a call on Facebook, asking if anyone had experience with it. After a particularly frustrating call with my local oncologist’s nurse, I had a good cry and begged God for some direction. I was so confused, deflated and scared. I took a walk to calm myself down and clear my head. Then I got on Facebook and saw a message from Rick Shapiro, a cancer advocate whom I met at the Annie Appleseed conference, as well. He is writing a book and had interviewed a woman named Dr. Elizabeth Panke, whom in 1999 was given two months to live after being diagnosed with stage IV ovarian cancer. She got on the Internet and found Dr. Robert Nagourney, founder of Rational Therapeutics, a lab that performs these tests. She credits the test for finding a treatment that saved her life. The kicker was she lives in Cincinnati, and the lab she runs is just minutes from my home! I felt the serendipity was hard to ignore.
I went to my oncologist in Indianapolis to go over my scan. It was a nightmare. He gave me absolutely no hope and shot down any suggestions I had. He went over the same (unlikely-to-work) chemo options as he had in the past and offered me no insight into new trials or anything on the horizon. It’s like he had written me off. I was dejected, to say the least. I decided never to go back to him again. He’s fired, as The Donald would say.
Thank God Dr. Panke called me back while we’re on the way home. Since then I’ve been busy making arrangements to get a biopsy for the test. Her husband happens to be the director of pathology at a local hospital, which, thanks to his leadership, has been doing these procedures and working with Ngourney’s lab for years. They both got on the phone with me last night. I was moved to tears by their generosity and willingness to help. I also talked with my friend Lynda Dewitt, who lives in California, where Rational Therapeutics is located, she’s going to connect me with other stage IV survivors she knows who have been saved by having this test performed.
I was watching the latest Joel Osteen program this morning, and in another case of serendipity, he spoke on the power of perseverance – not giving up no matter how many ‘no’s’ you receive. He related many examples of people who faced incredible setbacks before their breakthrough. And my Daily Word spoke about letting go and letting God. I am not giving up; not by a long shot. I am planting the seeds and letting God do the rest. I have to believe that just like the flower, a positive outcome will bloom.
May 10, 2012 - Posted by tamilb - 9 Comments
Rachel, Marina and her husband Paul
I’ve been receiving many offers to review books by fellow survivors. While I don’t have time to honor all of the requests, there’s one book I couldn’t put down once I started reading it:
Hopping Roller Coasters by Rachel Pappas.
I first “met” Rachel when she interviewed me for her wonderful and informative site www.1UponCancer.com. I discovered we shared a lot in common. In addition to having breast cancer, we have family members with mental illness. Hopping Roller Coasters
honestly explores Rachel’s tumultuous relationship with her daughter Marina. I’ll let Rachel relate her story:
I had a bunch of miscarriages earlier in life. I finally had my beautiful baby girl – a three-and-a-half pounder who spent her first month in the hospital. After her sudden entrance into this world and much surrounding drama, life kept happening, as it does. Through it, I’ve been no stranger to depression; actually my diagnosis is bipolar disorder. Sadly, I made a lot of mistakes as a mom, and I will at least partially blame the illness, same as I blame chemo brain when I find my keys in the refrigerator.
The red hot flashes came on; the wires in my head tightened then popped. And I emotionally and verbally tore into my daughter—the person I love most— over and over. Between the abuse and her predisposition to mental illness, she eventually became “damaged,” as she told me once, crying. Marina had a long, rough go for a while. More ambulance rides and overnights in the ER than I can count, literally. Five schools in five years … a year in lock down, and more of a very hard story than I can put in one article.
April 30, 2012 - Posted by tamilb - 8 Comments
My acronym for FEAR: Forgetting Every Awesome Reality
I have to admit it, for me fear is a four-letter word. I try to run from it, hide from it, but sometimes it comes and bites me in the ass. I pride myself for the coping mechanisms I’ve found and used to deal with living with metastatic cancer. Most of the time, it works. I’m able to live my life with joy and gratitude, counting my blessings along the way. But I’ve come up against a new obstacle that made me feel like the proverbial rug had been pulled out from under me.
It’s happened only a few times, but has caught be totally by surprise: sudden excruciating pain. One time it was in my lower back; the other two times in my pelvic region. It was enough to make me wince, cry out, and call the doctor to get pain medication. The pills worked each time, and I was back to normal, but the experiences left a lasting impression. My mind went to very dark places … “My cancer is growing.” I’m going to die.” It’s like everything I learned went out the window. I’d try affirmations, praying, focusing on gratitude, but it was like the pain was telling me all that stuff is bunch of hooey.
I’ve heard lots of cute acronyms for FEAR – one of which I can’t print with a clear conscious – but my sudden onslaught evoked “Forgetting Every Awesome Reality.” I forgot to remind myself that these painful moments were rare and short-lived, that I’ve been told I have many options available to me, that I have an awesome God that has my back. I was giving all my power to the pain.
April 24, 2012 - Posted by tamilb - 6 Comments
Hanging out at the Annie Appleseed conference in 2010. Darlene is at the front of the table. Three people in this group - Eleanor (second from left), Ashley (beside her) and Ken (at Darlene's right) have since passed away.
In my last post, I shared a video made by my friend Darlene Gant, who is waging a campaign to have access to a drug in the midst of fighting for her life. The video, which has gone viral, shows Darlene pleading her case to the FDA to receive the drug Pertuzumab before its predicted release in June. Why? Because she doesn’t think she’ll still be alive by then.
As a result, both the FDA and Genentech, the drug company, released it to her for compassionate use. Now it is up to the administrators at her hospital, Moffitt Cancer Center in Tampa, to drudge through the bureaucracy of review boards and applications so they can administer the drug. It is my understanding they are working at a furious pace to make this happen as soon as possible. The problem is, Darlene has no time to wait.
April 18, 2012 - Posted by tamilb - 7 Comments
Here's my attempt to answer some questions.
I know this may seem like a simple question for many of you, but I’m realizing that many people don’t understand what it means when you have metastatic cancer. One friend (who I’ve known for years and heard me talk about cancer pretty extensively) didn’t realize I have been on treatment almost continuously for four years. She thought I was done.
I mentioned this on Facebook and several survivors related similar stories. We go to walks with a sea of pink and people proudly announcing that they beat cancer. That seems to be the vision most people hold. Maybe it’s because I wrote a book called From Incurable to Incredible, people think I’m cured. Maybe it’s because I haven’t lost my hair in a while. People tell me all the time how good I look, and I don’t question it. As my daughter once said to me, “compliment them back.” And that’s what I usually do. I take it as a compliment; not that they expect someone with cancer to be pale, emaciated and bald.
April 12, 2012 - Posted by tamilb - 2 Comments
- Susan Thornton is giving cancer a run for its money … and then some!
After being sidetracked a bit by my medical situation, I’m now preparing for speaking engagements and other things book- and blog-related. On May 5, I’m heading to Columbus to speak at the Cutaneous Lymphoma Patient Education Forum. I spoke to Susan Thornton, who’s organizing the event and discovered a lot about this rare disease.
Cutaneous lymphoma (CL) is a very rare form of non-Hodgkin lymphoma that affects the skin. CL affects about 30,000 people in the US and Canada. It occurs more often in African American males and in general in people over age 60. The disease is slow growing and causes severe itching and rashes. For this reason, it’s often misdiagnosed as eczema, psoriasis or dermatitis. Further into the conversation, I learned Susan, who’s been living with the disease since 1992, has quite a story of her own:
It was at the fairly young age of 31 that my journey with cutaneous T-cell lymphoma (CTCL) began. As so many CTCL patients first do, I began seeing several dermatologists over the course of a year. After seeing quite a few, I was eventually fortunate enough to have been referred to Dr. Eric Vonderheid, one of the few specialists treating cutaneous lymphoma at the time. It was 1991, and I was diagnosed with CTCL. With all that I was involved in at that time in my life – the hopes, dreams and life goals I was pursuing – this diagnosis stopped me cold.
April 5, 2012 - Posted by tamilb - 2 Comments
Ashley's art encourages us to let our light shine.
Today, we welcome a guest post by Ashley Murphy, a 12-year liver cancer survivor, author and artist, who is spreading hope through her story and art:
I was diagnosed at the young age of 23 with FHC- Fibrolamellar Hepatocelluar Carcinoma-liver cancer. The year was 2000, the millennium bug year, Y2K, as most remember it. Already a wife and mother, the “c” word was not very welcomed! My battle began with what I thought was gallbladder trouble. A sonogram was scheduled and at that appointment I was told there was a spot on my liver. Test after test proved that yes in fact it was cancer.
At my appointment with the surgeon, we discussed a liver resection, which is the removal of portions of your liver. He couldn’t guarantee my long-term outcome, but that was the treatment needed. I was game for it; I had to do something. My father had just passed away three years prior and I couldn’t leave my family behind. I felt so alone! As a Christian girl, I knew no matter how hard the days were or the outcome, I would be fine. I kept the faith. Family, friends, church family, and the community did so much for me.
After surgery, I stayed a night in ICU and a week in the hospital. I suffered from pneumonia and was hooked on morphine. A day, a week I will never forget! My oncologist said I didn’t need chemo. Everyone said I was “lucky” and I was, but that didn’t stop the emotional part. I had follow up appointments thereafter for five years with no signs of re-occurrences. In 2005, my doctor told me I was
free!
March 28, 2012 - Posted by tamilb - 7 Comments
Message on the bottle ...
I must admit my hope and faith have been challenged lately. There are times when I feel so frustrated that despite my best efforts, this tricky disease has decided to make a new appearance. But then I get these little messages to keep hope and faith alive. I believe there are no coincidences in life, and if I’m open to it, my Higher Power, whom I call God, sends me what I need at the exact time.
I’ve experienced several ”coincidental” moments these past several weeks. One morning after being exhausted from planning and implementing my brother’s memorial, I felt like isolating and wondered if my friends cared about me. As I was trying to take a nap, three friends called, one to ask me out to lunch. At lunch, I open my bottle of flavored green tea to see this message (pictured here) right after viewing Oprah’s interview with Wayne Dyer talking about the importance of affirming good things with the “I am” statement.
March 23, 2012 - Posted by tamilb - 10 Comments
I believe spring flowers are God's way of rewarding us for peservering through winter.
The longer I’m on this journey, I’m learning that it is a marathon, not a sprint, as my oncologist has told me. It requires my patience, faith, and determination … and yes, acceptance.
Spring here has been gorgeous, albeit a little earlier than usual. I find myself reveling in the beautiful blossoming trees, the fresh opening of tulips and hyacinth, the promise of new life. It seems almost in-congruent to the medical report I recently received, but I know God has another report. Just like winter, there is always a spring, and with it brings hope.
For those of you who follow me on Facebook, you probably already know this, but here goes. I had a scan last week, which showed some progression in my abdominal cavity. I demanded a biopsy on Monday to see what we’re dealing with. Yesterday I went to my local oncologist Randy Drosick for results. The test confirmed it’s cancer, but it has not changed – still estrogen/progesterone positive.
March 20, 2012 - Posted by tamilb - 2 Comments
Elyn Jacobs, our guest blogger
I promised that I would share more from my trip to the Annie Appleseed Evidence-based Alternative and Complementary Therapies Conference. My friend and cancer coach, Elyn Jacobs also attended, so I’ve asked her today to share some of her insights from the sessions. In addition to being a wonderful friend, Elyn is President of Elyn Jacobs Consulting, Executive Director for the Emerald Heart Cancer Foundation, a certified cancer coach and a breast cancer survivor.
Elyn assists women diagnosed with cancer to navigate the process of treatment and care, and educates to prevent recurrence and new cancers. She is passionate about helping others get past their cancer and into a cancer-free life.
What resonated throughout the conference was that conventional medicine alone is not the answer. Today I will talk about clinical advocate Gwen Stritter, MD, and her roadmap to beat cancer. Dr Stritter provided a humorous and excellent plan for someone just diagnosed with early stage breast cancer who wants to increase her chances of a cure. She also commented that Dr Keith Block
(editors note: the keynote speaker of the conference. I am a patient of his clinic) did an excellent study on these combined steps and found a
substantial increase in survival for those with advanced metastatic cancer (editor’s emphasis).
