CURE Readers

I want to thank you for including the story “Keeping the Faith,” by Theresa Sullivan Barger, in the 2018 December bonus issue of 

®. I am a survivor of stage 4 colorectal cancer, diagnosed in 2004. Yes, I am now 15 years post-diagnosis without evidence of disease. When I first received my diagnosis, I was working as a clinical research nurse at the Cancer Institute of New Jersey and was fortunate to have a skilled and dedicated group of colleagues who were instrumental in my treatment. As a research nurse, I was well aware of the impor&shy;tance of my surgeries, chemotherapy and radi&shy;ation treatment, which would vastly improve my outcome and prognosis. However, I have found that little is known regarding the other variables that are critically important to long-term survival rates — things like hope, social sup&shy;port and, most importantly (to many), faith. As mentioned in this article, “there are things outside the realm of science and more within people’s spiritual faith” that can’t always be measured or hypothesized.

All I know is, I prayed all the time when I was undergoing treatment and can’t even begin to count the Hail Marys I said while I lay on the radiation table, during chemo and before being wheeled in for surgery. I was also very thankful for all those around me who shared prayers for me. Faith and spiritual awareness should not be underestimated in their value to help those who have cancer to manage care, feel comfort and survive.

by Tina J. McConnell from Edmore, Michigan

Last night, my daughter-in-law gave me my first copies of 

®. She is a newly licensed nurse practitioner who has cho&shy;sen our local oncology center as her first appointment, motivated by the opposing experiences of losing her father to cancer at age 48 and watching me not only sur&shy;vive but also thrive after my own cancer diagnosis, received at age 46.

I was struck by the title of Stephanie Hosford’s book, “Bald, Fat and Crazy” (December 2018 issue), as I, too, received two pieces of life-altering news just days apart. In my case, however, it was the potential of losing my job, as I was placed on leave Dec. 1, 2016, after a run-in with my boss, and receiving a cancer diagnosis on Dec. 19 (after a biopsy and lumpec&shy;tomy). I chose to have the recommended partial mastectomy days before Christmas, because I feared losing my insurance coverage if the school board for which I worked made good on its threat to fire me.

I’m used to being in charge of my own life. I am an organizer, the go-to arranger in every group. But like Kim Green in your article “Keeping the Faith” (in the same issue), I had to let go and let God. I have always felt strong in my faith, but until that point I had not truly turned my life over to God and didn’t even realize I hadn’t. Faced with what felt like no way out and no control over our situation (we had one son in college, and we live on the family farm — would treatment wipe out all of that if I lost my insurance?), I prayed: “God, I can’t figure this out. I can’t figure out what I’m supposed to do. I can’t solve this problem. So, I’m going to turn it over to you, and I promise to wake every day and bravely face whatever you give me.”

The school board did decide to fire me, without cause. However, God sent one attor&shy;ney after another as each handed my case to the next more qualified to handle my unique situation, ultimately saving both my benefits and my job. God gave us medical team mem&shy;bers who were not only skilled medically but were also my champions, both personally and professionally. They were angry on my behalf at people they didn’t even know and cheered me on as I took on multiple part-time jobs to stay in the workforce during treatment and the investigation.

There were days when getting out of bed was the one thing I promised God I would do. Then I would promise to take a shower and get dressed. Then I promised to eat some&shy;thing. Recognizing that I only had to do one thing at a time and then decide if I had it in me to do the next kept me focusing forward.

When working part time, undergoing treatment (three surgeries, chemotherapy and radiation) and fighting for my job became too much, God sent me the wisdom to put my professional fight in the hands of my legal team and focus my energy on working and treatment.

In the summer of 2017, I finished treat&shy;ment, interviewed (bald) for a new career (and was hired) and was offered my old job back (but declined), and we had our first grandchild. God delivered. My faith had pulled us through.

I’m approaching 12 years in remission from adenoid cystic carcinoma in my left breast. I have chemotherapy-induced neu&shy;ropathy of my hands and post-mastectomy pain but am otherwise healthy and active and live life fully and gratefully every day. At age 58, I am two weeks from embracing yet another new career. God is good.

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Comments from you, our readers, from the 2019 Spring issue of CURE®.
 

Comments From Our Readers on Recent CURE Publications

.” I’ve used that phrase often. This article put many of my thoughts into words and words into paragraphs. After treatment, that is something I struggle with, still. “Changing the trajectory of my life” is a perfect description. The diagnosis turned my world upside down. The treatment wreaked havoc on my body and mind. Thank you. Reading this helps so much.

. In 1999, I emerged from the surgical suite at a community hospital screaming like an animal that was just caught in a steel trap. Said agony never improved. Areas of perpetual torment include my chest wall, breast, arm, shoulder, hand and ring finger.

After nearly two years of consults with neurologists and anesthesiologists, I was finally gifted with a name for my omnipresent torture. Dr. Michael Brennan’s diagnosis of post lymph node dissection pain was later confirmed at (Memorial) Sloan Kettering’s pain clinic … Through the years, I have found that a day of activity — whether it be moderate exercise, shopping or teaching my four-hours-aweek GED course &mdash; must be followed by a day of homebound relaxation.

My husband lost his cancer battle in 2015. Therefore, I am grateful that I still have fun days to treasure, a family and a job I love, memories of a great marriage and the opportunity to have traveled extensively.

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Comments from you, our readers, from the 2018 Summer issue of Heal.

Comments From Our Readers on Recent Heal Publications

AS A THREE-TIME cancer survivor (prostate, colon, skin) and a longtime subscriber to 

® magazine, I was very disappointed in reading your article on the possible 

that various treatments of cancer may have.

It was an excellent article written by Leah Lawrence, with the exception of one sentence: “Ask your oncologist to recommend an ophthalmologist for a more detailed medical examination of your eyes.”

As a practicing O.D. (doctor of optometry), I suggest that this recommendation is too narrow. Optometry has changed since I started practice back in 1964, and the great majority of us are perfectly capable of diagnosing anomalies of the eye to a degree that I never thought I would see in my lifetime. I feel that my profession deserves a retraction of that statement, as the licensure of the great majority of practicing O.D.s today includes both the diagnosis, as well as treatment, of eye disease, and in Georgia, I am licensed to prescribe any pharmaceutical agent that an ophthalmologist can.

I am 68 and living on the edge with myeloma. Each issue of 

® magazine has something of value to me.

” in the winter 2018 issue, I enjoyed the discussion of meditation, with references to diet, yoga and exercise. However, the list of resources on page 27 (“Practicing Mindfulness at Home”) needed one more link.

® fall 2016 issue, on page 12, was a link for the best mindful meditation site: thisiskara.com. This is a simple, wonderful, free site that works well on phones, tablets and laptops. There are 12 guided meditations, designed specifically for cancer survivors and patients.

I hope you will once again share this valuable link with your readers.

Lawrence Stacey ASHEVILLE, NORTH CAROLINA

As a daily money manager/financial organizer, I read with special interest the response of Len Lichtenfeld, M.D., to the insurance paperwork question (House Call, winter 2018, page 19). It would be helpful for your readers to know that there actually are professionals who can help do the hard work related to tracking insurance claims and bills (and confirming their accuracy) — specifically, daily money managers and health insurance advocates. This is exactly what we do efficiently and professionally while maintaining clients’ confidential information.

Nationwide, daily money managers charge about $85 to $150 per hour; some advocates will work on a contingency basis when negotiating medical bills.

It was nice to read Andrew Smith’s article, “

. The mention of patient assistance programs helping with the cost of drugs or providing them for free was lightly touched upon.

Today, most patients with private health insurance have out-of-pocket costs associated with all types of medical care, not just oncology. The oncology patient can actually capitalize on the fact that there are patient assistance programs that cover not only oral medication costs but also some infused chemotherapy in clinic for those eligible. These pharmaceutical-sponsored programs are especially valuable for patients with extremely high deductibles and out-ofpocket expenses. The trend is for cancer centers to turn to these programs not only to assist with drug access for their patients but also to prevent the cost of any internal write-offs of uncollected copays and deductibles.

The patient needs to ask a point-ofcontact person, such as a patient financial counselor or nurse, about medication assistance programs. In the event that patients do not have access to help from their care teams in applying to these medication assistance programs, they need to obtain a list of their infused and oral drugs. The patients can then search the pharmaceutical manufacturers’ websites to find programs to which they may apply. Medicare patients may check whether they qualify for assistance from a patient advocacy organization such as the Patient Access Network or the Patient Advocate Foundation.

Medication and foundation assistance programs are intended to improve access to prescribed therapies. Most pharmaceutical companies’ assistance programs are largely unknown or underutilized. Let’s spread the word that there is some help with the expense of cancer treatment.

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See what CURE readers have to say about our previous issues.

Comments From Our Readers on the Summer 2018 Issue

I was diagnosed with prostate cancer shortly after my 53rd birthday and found myself at an oncologist’s office in a well-known hospital. He didn’t bother to examine me, but merely gave me his conclusion after reviewing my test results. Frankly, I thought he could have phoned it in.

“Your cancer has metastasized,” he said. “It’s incurable.” Simple as that. He delivered a death sentence with the passion of a second-grader reciting a poem.

I took his statement to mean I had very little time left: perhaps months, at best, or even weeks. I didn’t bother to ask him.

The next morning, I made myself a peanut butter and strawberry preserves sandwich for breakfast. I suppose having the Grim Reaper in the room next to the kitchen can result in one’s sensibilities being surreal. I remember thinking I would really miss the flavor of peanuts and strawberries when I died.

My next thought was what to do with the very short time I might have left to me. Did I want to buy a boat or a sports car, move to the Mediterranean or have a torrid affair with an attractive stranger? I didn’t long for any of those pastimes. Instead, I decided to go to my office as I always did during the week. I am slightly embarrassed to admit that I didn’t want to do anything different than continue to live my unspectacular life.

The stories in “Grand Gestures” in the summer 2017 issue of CURE® reminded me of that experience 15 years ago. I was inspired by the others who pursued mountain climbing, masquerade balls and leaving a legacy of books, despite their diagnoses.

It turned out that the prognosis I anticipated was incorrect. Shortly after the incident with that oncologist, a new prescription medicine made from my own immune cells, called Provenge, brought me back from the edge. Now I am still going to work every day.

The moral of the story: Don’t believe everything you hear, even if it’s from a knowledgeable doctor at a prestigious hospital.

I liked Tara Haelle’s article on GBMs (glioblastomas) in the Summer 2017 issue of CURE®. I had a GBM in 2002. Mine was a large hit of pain. I also went to UCLA for a second recommendation.

I had a great doctor at that time, and I made goals of what I wanted to do in life. Even though there is brain damage after the surgery, chemotherapy and radiation, I wish there was more help for those who had a brain tumor. I joined the military, played women’s professional football and made it halfway through nursing school ... I would like to complete nursing school. However, most schools don’t have assistance for those who need to learn from a different perspective. If there was someone to help me with my bucket list to help me get through nursing school, it would be a miracle. Having a brain tumor is hard — but the dealing with goals afterwards was harder for me.

I hope that, one day, there will be help for others who have been through a brain tumor treatment.

PALLIATIVE CARE SHOULD BE OFFERED EARLIER

I read with interest your article on palliative care. We received palliative care on the last day of my husband’s life. Had we had the knowledge that this service was available to us, we would have been able to make better decisions.

We felt disjointed with his care and knew something was missing. My husband was a model patient. All appointments were met in a timely manner. When the time came for “comfort care,” we were so stupid as to think that we would be able to continue to communicate with him, but he would not be in pain.

We are fairly intelligent people, but we were totally out of our realm. When my husband was turned into a moaning, incoherent person with the “comfort care” medicine, we found we were the ones who needed palliative care. The bustling, overworked medical personnel, even though they were caring and competent, only had time to administer doctors’ orders.

It became obvious that we had desperately needed guidance throughout my husband’s illness. As soon as he was diagnosed with stage 4 bladder cancer, palliative care should have been brought in to make his last months easier for him and his family.

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