Gratification!

Yesterday was a day to relish.  I traveled sixty miles from my home to Johns Hopkins Hospital to have what I hoped would be a final follow-up visit at the Kelly Gynecologic Oncology Service where I had been treated five years before for advanced ovarian cancer.  And my hopes were realized.

Dr. G. said that he had no real recommendation for further follow-up for me.  I was five years post-treatment and had not had a detectable recurrence of my disease. He said, “This is when we begin using words like cured.”  He said while oncologists never talk in terms of a 100 percent likelihood of cure, he could say I have a 90 percent chance of never experiencing a recurrence.  He said I was extremely lucky and it was a very happy moment for everyone concerned.  I thanked him for his help and said I owed my successful survival to everyone on the Hopkins team.  It was very clear to me the care was superb and critical to my outcome.

Dr. G. demurred a bit saying he would like to take credit when his patients do well, but some of this is also likely due to genetic make-up.  A friend in the room then asked him about any related cancers, that is, if one has had ovarian cancer, is there a likelihood of secondary, related disease.  Dr. G. said for those with the BRCA 1 or 2 mutations, breast cancer would be related.  He also noted that the BRCA genes, at least for ovarian cancer, seem to provide a protective quality making the cancer more sensitive to the chemotherapy drugs given to destroy it.  He said he often wonders about BRCA mutations when a patient has achieved a five year anniversary with no recurrence of disease. He then asked about my family history of breast and ovarian cancer.  This issue had been thoroughly discussed with my first GYN- oncologist, Dr. Bristow.  My family history is not without breast cancer victims, but all were stuck by the disease in their fifties, some generations skipped disease altogether, and no one but me had developed ovarian cancer.  This is not the typical disease profile for a family with BRCA mutated genes.  Dr. G. said I might want to talk with the Breast and Ovarian Surveillance Service and Genetic Testing group at Hopkins for the sake of my family members to see what they think.  I said I would.

Dr. G. said another related cancer is leukemia, a consequence of chemotherapy, but this was a small likelihood.  I had read about this in a fascinating book on the history of cancer and its treatment called, The Emperor of All Maladies, by Siddhartha Mukherjee.  It won the Pulitzer Prize in 2010.  I also knew that leukemia can be caused by too much radiation absorbed by CT scans, or other radiological tests, and especially as a consequence of radiation therapy.

But these small risks were worth the fight to defeat ovarian cancer.  That disease was going to kill me in a matter of a year or so.  I may never develop leukemia and I never miss a mammogram.  So, as Dr. G. said, I am now at the same risk as everyone else in the population for cancers like colon and lung.  It may sound strange to say this, but that sounds good to me!

As I left the exam room and gave my paperwork to the clerk to check me out, she asked me if I needed another appointment.  She could not have known how gratifying it was to answer, “No.”

 

Today is my Five Year Anniversary Post-Ovarian Cancer Treatment!

This is a momentous day for me and for anyone who has suffered from cancer.  Today marks the fifth anniversary since I finished treatment for advanced ovarian cancer – epithelial, stage IIIC. I was diagnosed in March of 2008 and received eight months of treatment involving two major laparotomies and nine cycles of both intravenous and intraperitoneal chemotherapy. I have been followed every six months since finishing treatment.  For three years, this meant a CT scan, plus a CA 125 blood test, an internal exam and careful questioning about symptoms.  At my three year anniversary, without signs of a recurrence of my cancer, I elected not to receive any more CT scans. From the time of diagnosis through my three year follow-up I had received a total of ten and had growing anxiety about hurting my apparent, and hard-won, good health by subjecting my body to pretty high doses of radiation with each CT scan.  I discussed this with my oncologist who acquiesced to my decision as long as I watched and reported any symptoms and continued to be followed with blood tests.  If symptoms occurred, or the CA 125 began to steadily rise, we would then do a CT scan to provide additional information.

I had my intravenous port taken out just last May, four and a half years after finishing treatment.  Given my diagnosis, the chances of a recurrence were over 75 percent, I was urged to keep the port as an “insurance policy.”  So, I did, faithfully getting it flushed every 1-2 months all those years. I paid out-of-pocket for these flushes as well as the CT scans since I had an individual insurance policy with a high deductible.  My total out-of-pocket costs in a year amounted to $20,000 before finally getting on Medicare last December.  What a relief!

I will travel to Johns Hopkins Hospital in Baltimore today to see the third gynecologic oncologist I have had since I began treatment, the other two have since left Hopkins for other venues.  This doctor was part of the team that treated me in 2008, so he saw me in clinic at least once and dealt with an infection in my abdominal medi-port site.  I don’t know if he will consider me “cancer free” at this five year mark without a CT scan, but I fervently hope so.  I am hoping he will say I am discharged from the Kelly Gynecologic Oncology Service to the annual care of a local gynecologist.  We will see.

This is a day for reflection.  The first thoughts and feelings I have are extreme gratitude for my apparent good health.  I have been able to truly push the anxieties of having had cancer into the deeper recesses of my psyche where it has only surfaced around my six month follow-up visits.  Much more difficult has been dealing with the profound feelings of loss after my husband’s death from pancreatic cancer just six months after finishing my own treatment.  He became ill the week before my last chemotherapy and had emergency surgery for a completely blocked gastrointestinal system the night before that last treatment.  It took three weeks to get a definitive diagnosis, and the completely devastating news that he had advanced pancreatic cancer.  That news was delivered to us in a room on the same floor, just steps down the hallway from where I saw my GYN- oncologist – my destination today.  So my hope and feelings of gratitude are tinged with sadness for my husband who died in otherwise excellent health at age 59.  Life, for sure, isn’t fair!

My gratitude goes first to the doctors and nurses and other members of my care team at Johns Hopkins who gave me top notch expert care.  This article published in the New York Times last March explains why that expertise is so critical to a good outcome.  The study featured in the piece involved more than 13,000 ovarian patients and found that two-thirds did not receive standard care recommended by the National Comprehensive Cancer Network.  Dr. Bristow, the lead author on the study, used to head the Kelly Gynecologic Oncology Center at Johns Hopkins, and he was my gynecologic oncologist all during the active treatment phase of my care.  I not only had excellent, expert “search and destroy” surgery, I also had aggressive chemotherapy involving both intravenous and intraperitoneal delivery of chemotherapy drugs which research has definitively shown significantly improves survival.

Two paragraphs from the article offer, I think, surprising and strong reasons for ovarian cancer sufferers to feel hopeful:

“Ovarian cancer has unusual traits that make it more treatable than some other cancers. It is less likely to spread through the bloodstream and lymph system to distant organs like the lungs and brain. The tumors do spread, but usually within the abdomen and pelvis, where they tend to coat other organs but not eat into them and destroy them, said Dr. Matthew A. Powell, a gynecologic oncologist and associate professor at Washington University School of Medicine in St. Louis.

 And most ovarian cancers are extremely sensitive to chemotherapy, experts said.”

My gratitude goes secondly to my family and friends without whose steadfast support I could not have sustained the difficult journey of being diagnosed with a late-stage cancer, undergoing debilitating surgeries and chemotherapy, followed quickly and unbelievably by the illness and death of my closest best supporter, my husband.  Without these people in my life, I believe my medical team would not have been able to succeed as well as it seems they have.

Today we will see if I am done with this nightmare and can finally truly and completely move on.

 

Boxing Gloves and Cancer – One Way to Say You Care

 

Author wearing boxing glove during chemotherapy in 2008

In March of 2008, a few days before my first chemotherapy for stage IIIC ovarian cancer, a small package arrived in the mail. When I opened it I found a small gold boxing glove with a loop at the end so it could dangle from a bracelet or necklace. The note enclosed with the gift said, “To give you more fighting power.” It was signed by Judy, a friend who was also a work colleague. 

I was extremely touched by this gift and those words. I called Judy to thank her and to tell her that I would wear the boxing glove to every chemotherapy session.  It would be a reminder of her caring concern as well as the need for me to stay strong. This was going to be the fight of my life for my life. There was just a 27 percent chance I would be alive in five years.

Gold Boxing Glove pendant author wore throughout her cancer treatment

Two weeks later, back at work, I attended the first meeting since my surgery and diagnosis three weeks before of one of the coalitions I led. I was wearing my new wig and hoping no would notice, or if they did, hoping they would assume it was a new hairstyle. Just two people commented that they liked my new haircut. I replied with a simple thank you. Judy and Karen, another friend and colleague attending the meeting, arranged to meet me afterwards for coffee.  

 Settled with our coffee and muffins, Judy asked about my chemotherapy schedule. As I answered her question, she and Karen tugged at their necklines and pulled out, on gold chains, boxing gloves just like mine! Judy said, “We need to know when you are getting your chemo so we can wear our boxing gloves on those days.” 

 I was overwhelmed. What an expression of caring friendship! I couldn’t thank them enough.

I was treated with two drugs for nine cycles with a combination of intraperitoneal, which is chemotherapy delivered directly into the abdomen through a special mediport, and regular intravenous chemotherapy. I also had two additional surgeries during this time. Through it all, I wore my boxing glove and Judy and Karen wore theirs.

 It has been four years and five months since I finished treatment. I am not only alive, I am well with no recurrence so far.

Susan, a close friend of mine, was recently diagnosed with breast cancer. I could think of no greater gift of friendship than to send her a boxing glove pendant like mine and tell her I would wear mine on every day she had an important medical appointment, or radiation therapy. She told her radiation technicians the boxing glove story and they let her wear it during her treatment sessions!

I am happy to report that she is doing very well. 

 

 

 

 

Three Ovarian Cancer Survivors Offer Advice

Ginny (left) Wendy (center) Marcia (right)

Three ovarian cancer survivors recently met to share their cancer journeys and to provide words of advice to those who are newly diagnosed.  Here’s who they are and what they have to say about living with ovarian cancer —   

 Who We Are

GINNY – “I am a pre-natal genetic counselor and have worked here at Johns Hopkins for thirty-seven years. Six years ago I married my long-time partner who is a retired pediatrician. We enjoy travel and one of my favorite places is Montana where my dad’s family comes from. I sing in a church choir and enjoy that very much. I also enjoy attending Center Stage performances with a group of female friends. In recent years, my husband and I have been caring for aging parents.”

WENDY– “I am 72 and a retired consultant in the field of organizational development. I have enjoyed a career in senior level management that involved working with individuals, groups and organizations to help them discover how to solve problems and achieve goals. I have been married for 50 years and have two children, a daughter who is an artist and a professor and a son who is a clinical psychologist. I also have two adorable grandchildren. My mother is turning 99 soon and has been a rock in my life. I love people and have friends the world over; I love to swim and walk for exercise and I practice meditation and yoga.”

MARCIA – “I recently turned 65 and just retired as a lobbyist representing non-profit public health organizations in Washington, D.C.  I am a cancer survivor and a cancer widow – my husband of twenty-three years died of pancreatic cancer six months after I finished my cancer treatment. I have a stepdaughter that I keep up with. I live part-time on Naked Mountain in central Virginia and write this blog. I am also working on a memoir and volunteer as a patient navigator with breast cancer patients at Georgetown-Medstar Hospital in Washington. D.C.  I enjoy nature and music and make regular exercise a priority.”

Our Cancer Histories

GINNY – “I was diagnosed with stage IIIC epithelial ovarian cancer in 2002. I was 50 so turning 50 was difficult.  I immediately got tested for genetic mutations because of some family history and because I am a genetic counselor. I was found to be BRCA 1. So, I also worry about breast cancer. I had the standard debulking surgery that involved colon resection. I had the standard six cycles of IV chemotherapy with two drugs. Then I was offered additional intraperitoneal chemotherapy. It was not standard treatment so I did a lot to research to figure out if I should do this or not. The answers I got were conflicting, so that didn’t help. I finally decided to do it because I reasoned that if I got a recurrence and hadn’t tried it, I would always wonder.  I did three cycles and was very sick; it was awful.”

“That was my initial treatment phase. Since then I have had four recurrences. They have been localized and each time I have had surgery followed by six cycles of chemotherapy involving different sets of drugs.”  Wendy interjects – “So, they undid your zipper each time?” Ginny replies that they did open her up through the same incision site, but for two recurrences involving the liver, the incision goes diagonally across her abdomen. Marcia remarks, “I have incisions that go horizontal at the bottom of my abdomen and then vertical from the chest to the pubic area and cross over a little bit!”  

We all laughed about our crazy scar patterns. 

Ginny has been cancer free for four years. She needed a double hernia repair six months ago secondary to abdominal weakness caused by her prior surgeries.

WENDY — “I was diagnosed at age 67, out of the blue. I thought I was the incredible hulk. I had never been ill so it was a complete shock.  I have a rare kind of ovarian cancer involving two different kinds of cancer cells.  I was also stage IIIC at diagnosis and was experiencing right before some bloating and knew that my waistline had expanded. I got the diagnosis on May 6th 2008 and on May 14th I was in surgery. I was put into an induced coma for six days to help me heal given the extensive amount of surgery that was done.  A mere three weeks later I received six cycles of three different drugs to address both cancer cell types and then received three additional cycles of intraperitoneal.”

Wendy has had one recent recurrence after being cancer free for about 2.5 years, she is a little unsure how long since her medical team followed a slightly enlarged lymph node in her periaorta region for a year or longer before this lymph node began to grow and finally lit up on a PET scan indicating it was probably malignant. It took four months for her medical team to schedule surgery to remove the lymph node because two different kinds of surgeons had to be involved given its location. Wendy says, “It was very difficult to wait once the decision had been made to go ahead with surgery. But my oncologist says I have the slow, sluggish kind of cancer which is a good thing.”  Wendy’s surgery was followed by six cycles of chemotherapy involving Taxotere, Carboplatin and Avastin. The latter drug, which interferes with cancer’s ability to form blood vessels, is a new treatment addition for many ovarian cancer patients.

Wendy had a more difficult time with chemotherapy with her recurrence, particularly intestinal gas and severe diarrhea. Her oncologist recommended she continue on Avastin after completing chemotherapy which she did for four cycles. However, she developed high blood pressure and had to go off the drug. Since stopping Avastin a few weeks ago, she has been feeling much better.

MARCIA – “I was diagnosed with stage IIIC epithelial ovarian cancer on March 12, 2008. I was 60 years old. I had my first laparotomy in a Virginia hospital where the diagnosis was made, but I transferred to Johns Hopkins for my follow-up care.  I received three cycles of IV chemotherapy with two drugs, Taxotere and Carboplatin. Then I had another laparotomy followed by six more cycles of combination IV and intraperitoneal chemotherapy using the same drugs. I had very manageable side effects throughout, but became very fatigued by the end.  My biggest problem was repeated infection of the abdominal port site for administering the intraperitoneal chemotherapy. My medical team nearly pulled the port out several times because of infection. I had to take antibiotics for this and once was hospitalized for C-Diff, intractable diarrhea. That was a real low point in my treatment journey.”

“I have been cancer free for four and one-third years.”

The toughest time in our cancer journeys

GINNY – “The initial diagnosis was very tough. I was confused, upset, drained. The first recurrence was also very tough emotionally. You finish treatment and think, “I beat this cancer,” and then it’s back.”

 WENDY – “The initial diagnosis was very hard, shocking, unexpected. The recurrence has been tough too. It robs you of the innocence you felt. Living with uncertainty is hard.”

 MARCIA –“The toughest times have been the initial diagnosis and then my husband’s diagnosis of pancreatic cancer and his death six months later. His symptoms first surfaced one week before my last chemotherapy.” 

 How we coped then and still cope now

GINNY – “Continuing to work has helped me. It was and is a good distraction from thinking about cancer. I was very fortunate to be able to be treated in the place where I work. My office was supportive about giving me time off for surgery, recovery, chemotherapy and then I came back full-time. Being treated in the place where I work gave me immediate comfort with my medical team that others may not have.”

“My husband’s support and reconnecting to friends who have been supportive has been very important.”

“I found the ovarian cancer support group at Hopewell Cancer Support in Baltimore very helpful. No one else really knows what you are going through like they do.  It has also been a good source of information sharing on all kinds of issues.”

“My church community has been supportive and the prayers of so many friends has been a source of support for me.”

 “I feel lucky to be still be here. I try to value the relationships I have with family and friends and don’t let things go by without fully experiencing them. The irony is that here I have cancer, but someone who thinks they are perfectly healthy can suddenly drop dead of a heart attack. So, valuing each person in my life and each experience is important to me now.”

WENDY — “I use the power of the mind. I have my own brand of spirituality, I live in the moment. If the sky is pretty, I soak it up. Awareness that death is real — I have stared into that black hole when I was in intensive care after the first surgery — helps me live in the moment, experience now. I use meditation and yoga as techniques to help me do this, to use the power of the mind.”

“Time helps healing. I had such a terrible time this last round of chemotherapy that I said to myself I would not do it again if faced with another recurrence. But as time passes and the discomfort fades from memory, I feel differently now. Time is healing in that way.”

“My husband and I have just reached a new insight – the lighter we can be about having and dealing with cancer, the better. At our age, 72 and 76, so many of our friends are dying, are ill, are losing their minds. Too much of our conversation has been about illness.”

MARCIA  — “I am very fortunate not to have had a recurrence, at least not yet. This has allowed me long periods of time when I truly do not think about having cancer, except when I am making a concerted effort to help others who are being impacted by cancer. I also do much more living in the moment as both Ginny and Wendy now do. I am more relaxed and appreciate what I have and how I feel today, right now.  It sometimes makes me almost giddy with a combination of indulgence, relief and gratitude.”

“But I am also very unfortunate in losing my wonderful life partner to cancer. My happiness is often interrupted with periods of grieving, even now, nearly four years later. What has helped me with loss is writing this blog about nature and its inherent joyfulness, as well as writing about cancer recovery in an effort to help and inform others who are impacted.”

“I am also writing a memoir about how my husband and I came to buy an undisturbed mountain in central Virginia, place the land under a conservation easement which earned it designation as one of the state’s 60+ natural area preserves, made wonderful discoveries along the way and then suddenly were faced with the challenge of battling two terrible cancers. Writing the memoir is very therapeutic for me.”

Our advice to those newly diagnosed with ovarian, or any other cancer

GINNY  — “Be prepared that having cancer is at least a part-time job, and at times a full-time job. Allow yourself to rest, but stay involved in something that will distract you from having cancer. This can be work, as it was for me, it can be your children or grandchildren, it can be a hobby, a faith group, whatever will work for you. Seek support that will be helpful to you. This may be a spouse, a sibling or parent, a friend, a cancer support group that either meets in person, or online. Understand that family members may not know how to support you, be forgiving and help them. Ask for things you need, like a ride to the grocery store.  Don’t delve too much into statistics about your cancer. They represent the average, and you are a unique individual, not the average. When the medical team gives you the treatment plan, make sure it is comprehensive – add to it whatever social and emotional supports you feel can be helpful to you, such as a faith group, cancer support group, complementary medicine, and so on.”

WENDY —  “Develop trust in your medical team before you go into surgery or chemotherapy.  Assert yourself by asking questions, and getting opinions from different sources, believe in yourself as you do this and then once you are satisfied, let the medical team do their work. Know that surgery and chemotherapy are instruments to help you, not hurt you. Keep your emotions steady, not too high, not too low. Listen to your body; let it tell you what you can bear, what you need help with. Don’t let cancer become the main dish in your life, keep it a side dish. One thing I do to help ensure this is read to young children. It is very engaging, it is the main course. Like Ginny, I have also found Hopewell Cancer Support in Baltimore very helpful and attend sessions of their ovarian cancer support group.”

MARCIA  —  “The most important tool you will need is someone who can support you, preferably the closer to you the better, but someone! Some people have legions of supporters, but you need at least one. Find ways to distract yourself from thinking about your cancer, whatever works for you as both Ginny and Wendy suggest. Try to exercise as much as you can. This is easier if you have done this regularly before diagnosis, but make a point to at least walk every day, or go to a gym and use the stationary bike or treadmill, do something! Exercise is a known mood elevator. Eat right – you know how to do this – fruits and vegetables, lean meats and dairy. Eating is difficult for many people undergoing chemotherapy, but the drugs to control nausea are getting much better all the time. This may be sacrilege for cancer patients, but stay away from sugary, fatty foods. Not every calorie is the same. There are powerful antioxidants, cancer-fighting qualities, in many foods. Help your body fight the disease. You can read more about this in the book, Anticancer, written by ­­­­David Servan-Schreiber MD, PhD a brain cancer survivor who is also a research psychiatrist. Keep a journal and write about what is happening to you, how you are feeling, what you are doing to stay busy and distracted, comment on experiences you have, write down your dreams.”

 Ginny, Wendy and I know what you are going through. We wish you the very best on your own cancer journey.

 

Cancer and Obama Inaugurals: Community Service Helps

Four years ago today, the first Inauguration of President Obama, my husband, Tim, began radiation therapy in an attempt to shrink back a deadly tumor in his pancreas discovered a few weeks earlier. His doctors hoped the treatment would work well enough to make him a candidate for the Whipple procedure, life-saving surgery for pancreatic cancer patients. It was his only chance at more years of life. He was 59 years old and otherwise very fit and healthy.

We lived in Reston, Virginia and had to travel that day to Johns Hopkins Hospital in Baltimore, Maryland. Nearly two million people were expected to be on the Mall in Washington, D.C., to witness the historic event – the inauguration of the nation’s first African-American President. While we were very excited about the new President and hopeful about his leadership at a time of peril for the U.S. economy, we were terrified we would be hopelessly stuck in beltway traffic trying to get to Johns Hopkins and life-saving treatment for Tim. Fortunately, we had wonderful friends in the Baltimore area who offered us a room in their home. We traveled to Baltimore on January 19th, spent the night with our friends and were on time the next morning for Tim’s first radiation treatment.

The radiation worked to reduce the large tumor in the head of the pancreas, but chemotherapy had failed to prevent hundreds of small, granular-like tumors from developing and spreading throughout Tim’s abdomen. He was not a candidate for the Whipple procedure. He died on May 3, 2009.

One year later in June of 2010, Tim’s daughter, Susan, and I decided to do something to help pancreatic patients and their loved ones. The Pancreatic Cancer Action Network was sponsoring the first Purple Stride in Washington, D.C. to raise money to advance research, support patients and create hope.  They were also holding an annual advocacy day to encourage Congress to pass the Pancreatic Cancer Research and Education Act which would require the National Cancer Institute to develop a strategic plan to improve treatment, early detection, and prevention of pancreatic cancer, and several other persistently deadly cancers. The five year survival rate for pancreatic cancer it is just six percent.

Susan and I raised money from family and friends and walked with several thousand others joined together in grief, but especially in hope, to fight the disease that took their loved ones away. We also joined in the advocacy effort and worked for the next two and a half years to get the pancreatic cancer bill passed.

Purple Stride, DC 2010
Susan and me with Tim’s picture pinned to our backs

On January 3, 2013, President Obama signed the bill into law. In a Congress that had been marked by bitter partisan conflict, this bill garnered 234 co-sponsors in the House and 58 in the Senate.  Both political parties were heavily represented among the supporters. Susan and I are extremely gratified with this positive outcome that we had a small part in achieving. It helps ease our grief to know that we have helped to prevent this, and other deadly cancers, from robbing other families of their loved ones too soon.

President Obama and his wife Michele have asked Americans to set aside one day during this inaugural season to participate in community service of their choosing. I urge those who are suffering from cancer, and loss due to cancer, to join in this endeavor. It will lift your spirits. I promise.