All Good News

It has been a very long time since I have update this blog, apologies, because I am overdue!
I'll give you recent history:
Last summer, I received radiation to try to prevent additional recurrences.  (I had experiences on in May 2011 while on a PARP inhibitor called BSI-201).  The radiation followed surgery in May 2011 (my third, but who is keeping track?)
In October 2011, Bill and I celebrated our 20th anniversary by going to France.  We spent 2 days at a lovely chateau right on the Dordogne River...stuff that fairy tales are made of.  This was followed by yet another recurrence of cancer, outside the field of radiation, but in seemingly all the wrong places.  So my wonderful doctors at Dana Farber got me into a research trial which was just opening November 7th to test 2 drugs.  One is a PARP inhibitor, called Oliparib, and the other is a VEG-F inhibitor, called Cederanib, which is an Avastin type drug.  It is a Phase double arm trial sponsored by the NIH.  One group gets just the Oliparib and the other group gets both.  I ended up as a patient on both drugs.
Within 2 months, the tumors were reduced by 50%.  In April of this year, they were reduced by 75% and recently, they have become non measurable. So Dana Farber has recorded this as a complete response to the therapy.
I will have to stay on the drugs, (which are oral,) and experience some side effects, but hopefully they will continue to be effective. So that is all good news about a targeted therapy that is being tested!
 I did not do the PMC this year, but Emily and Nathaniel completed the 50 mile ride with their Uncle Morgan.  I am proud of them because it was such a hot day!!
Any money for cancer research is money well spent.  I am an obvious beneficiary!
Thank you for all your support!!

Halfway Through Radiation Treatment

As of tomorrow, I will be halfway through radiation. It will be good to have it over with. I am fortunate to be able to have it done in Dartmouth, near where we spend the summer, although so far, the kids have been elsewhere. They both attended an Overland trip to Yellowstone Park, which was quite spectacular. Now, they are both going to a camp at Concord Academy, which will finish tomorrow. Then Bill will come down and stay with all of us for 4 days.

Bill and I have started a fund at Dana Farber, which will fund ovarian cancer research undertaken by my doctor, Dr. Ursula Matulonis. Since I am not riding in the PMC this year, we would welcome gifts to the fund to add to ours. It has become a priority for the Women's Cancer Center to fund GYN research, which has not received as much attention as breast cancer research. Also friends of ours, Heidi and Vaughn Harring are doing the ride. I urge you to consider supporting them in their efforts to raise funds for Dana Farber.

If you would like more information, please feel free to contact me. Dana Farber has been very good to me in my continuing fight against ovarian cancer.

Recovering from Surgery

It is expected to be a 6 week recovery from May 10th....right around when the kids get out of school (6/25). The surgery went very well, with the surgeon removing 2 cancerous tumors, however, not laparoscopically!! Bill and I had guardedly optimistic meetings with both oncologists yesterday (medical and surgical). They both recommend that I go to a radiation oncologist to consider treatment for the isolated outbreaks of cancer in my abdomen. Since this is the third time I have had surgery for tumors in the abdomen, (November 2009 and May 2011) the feeling is that it might be wise to do a pre-emptive strike to the region to clean up possible remaining cells. However, at this point, there are no visible remaining signs of cancer in my abdomen. So, the beat goes on. It looks as if we finally have decent weather. Hope it continues into Memorial Day weekend. Have a happy one!!!

Surgery Postponed Until May 9th

My birthday present was a reprieve from the original date of May 3rd to May 9th. More later....

On Hopefulness

HOPE IN THE FACE OF CANCER

Emily Dickinson’s Poem

HOPE is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard;	5
And sore must be the storm
That could abash the little bird
That kept so many warm.
I ’ve heard it in the chillest land,
And on the strangest sea;	10
Yet, never, in extremity,
It asked a crumb of me.

I have been asked to talk about experiencing hopefulness in the face of cancer. Three years ago, on Mother’s Day, I was diagnosed with Ovarian Cancer. I remember going in for the CT scan on that Sunday thinking I would get it over with and get on with the day. It was a beautiful day in May, with birds singing, flowers blooming, full of life. There was an annual gathering for family in the afternoon…a Garden Party of rebirth, celebrating the end of the long winter.

Our family had already escaped to the warm Bahamas over April vacation. I remember thinking, as we were flying in an old plane over the water, that we could go down at any time, our lives would be over….a family of 4. But it didn’t happen…we all made it home safely and I had to confront the biggest threat of my life alone. We had had a great vacation with friends. I knew something was wrong. I had had an ovarian cyst for a very long time, which was checked out every 6 months. I was told that it was fine and that the symptoms I was experiencing were unrelated—the pain in the left side, the cramping colon, which came and went without consistency. My GYN had failed me. She did not think the symptoms were related to the cyst. She wrote off most of my complaints to menopausal issues. She was sure it was not cancer. Over time, I also had noticed a little shortness of breath and a dry cough which I wrote off to allergy symptoms, possibly developing asthma.

Even though I had 2 grandparents die of cancer, I never thought I would get cancer. Why would I? I lead a healthy lifestyle…eat well (even being a vegetarian for 10 years), exercise regularly, watch my weight, avoid obvious health risks, read Harvard Women’s Health Watch regularly. I was religious about my mammograms, starting at age 35. I was careful about the ultrasounds, going every 6 months for 8 years to monitor the ovarian cyst that persisted on the left side. Other than seasonal allergies, most of the time I felt great, energetic, ready to tackle what was around the next corner.

I had worked as a financial analyst in Boston for 20 years, before having children. My husband was also in the investment business, and we met at a professional event, were married and lived in Newburyport for 18 years. I felt like a very fortunate person. I loved my life. I worked in an interesting field, covering biotech companies experiencing breakthroughs in Science. I believed there would be major advances made in my lifetime. In fact, all of my retirement funds are still invested in biotech companies.

We lived in a beautiful place, could walk on the beach all times of the year and commune with nature. When I had fertility problems, it was the ocean waves that created the desired relaxation response . The rythmn of the ocean: rising and falling, symbolizing the continuity of life. Coming and going, always: the constancy of nature. The reliability of nature, healing itself, renewing itself, one wave after another. Sometimes they come in a calm, soothing rythmn; sometimes powerful and destructive; sometimes angry; sometimes sad, always cleansing : the metaphor for life.

I believed in modern medicine’s abilities to diagnose illness and cure it. Isn’t this God’s greatest gift…Man helping man, woman helping woman? Doctors are gifted in their passion for humanity and ability to tackle the harder challenges. With advanced knowledge, one could turn to these people in a time of need. So I initiated the process of investigating what was wrong with me. I emailed my primary care doctor, and faxed her a copy of the GYN report. She said to come in and see her. Once in there for an office visit, she scheduled an ultrasound and bloodwork that day. The ultrasound was suspicious. I know because of the reaction of the technician, who immediately left the room in search of the radiologist. I was a bit shaken, but hoped for the best.

I remember driving on to the grocery store, trying to get on with my life, when my doctor called back and asked me to return to the office immediately. When I left the second time, I drove to my sister’s house, shell-shocked, trying to figure out what to do next. Once the CT scan was scheduled for the following Sunday, I remember my sister saying, “Let’s not dwell on it, move on and hope for the best. ” Being an optimist by nature, I guess I was hoping that I did not have cancer. Why would God fail me like this? I am a good person. I love life. It would be so unfair.

My children were 9 and 11. They were busy, we were settling into a new community. We had moved to give them the best in education. I was thinking of returning to school, getting another Master’s degree, another career, back to work as the children were getting older. It was fortuitous, because it also moved us physically closer to the advanced medical community here at Dana Farber, a world largely unknown to us. I feel as though we opened the door to a world I never knew would be so pivotal to mine.

I had a sizable tumor and the cancer had spread and now the doctors are talking about Stage IV cancer. My husband and I were shocked. I remember asking, naively, “How many stages are there?” Somehow I kept thinking this has to be ok. Maybe it is not as bad as we are thinking right now. Or maybe it is worse. My husband called his best friend, a doctor in Alaska and described this medical diagnosis to him, thinking he would provide comfort. The phone went dead for a very long time….deep breath….I knew from his reaction, it was bad.

In the end, we are alone…alone with our Maker, our doctor, our minister…. Preparing for the worst. My husband was with me going into surgery. He helped build the imagery of the beach we loved, the life we built, the love we shared. There was a closeness to a surgeon like no other. He was going to examine parts of my body no one else has…I went into surgery totally trusting in the best outcome possible. I awoke to hear him explaining to my husband that in addition to the hysterectomy, he had to resection the colon. He felt confident that all visible cancer had been removed in the abdomen. I awoke to searing pain in my bladder, grateful that I had survived the operation.

Now for the hard part, recovery….I met it head-on and tried to get up walking as soon as possible. I had some setbacks, but my mission was to get my colon working again, staying upright as much as possible, pacing the halls….It felt like forever. I just kept walking around the floor,then resting, then walking again, for eternity. The first day, my colon cleared, was a relief. I called my mother and asked for my favorite foods, aiming to get out of there as soon as possible.

Meanwhile, the wagons were circling. New friends and neighbors offered to help, delivered meals, walked the dog. My mother was at my home for 10 days, helping my husband and the kids retain their normal activities…going to school, participating in sports and after-school activities. Keeping them largely insulated from the truth. Their mother had cancer…a bad kind of cancer….a silent killer. My husband and I decided our most important priority was keeping the children’s lives as normal as possible.l But I missed them and wanted to go home.

I was tired, not up to doing much. In fact, it took all my strength to get out of the hospital and into my own bed. And it felt great…sun streaming….10 days had passed and we were well into the beautiful part of Spring….what we wait for all winter. Trees flowering, birds singing, the windows open, the dog by the bedside. It really was a good feeling. When my mother tucked me in bed and kissed me goodbye, I could see that she was crying. In spite of all her encouraging talk, she was sad. I remember saying to her, “Mom, it’s going to be alright”. Meanwhile thinking somehow things are never going to be the same. I have cancer now. This is my new reality.

I was philosophically opposed to enduring a course of treatment that would hamper the body’s natural ability to heal. I started researching cancer treatments on my own. It all led me to conclude that my best shot was taking a big hit of chemotherapy up front, hopefully eradicating the cancer cells that remained after surgery, and recovering hopefully cancer free! My surgeon agreed, even though I kept asking if he couldn’t cut out all the remaining cancer. “Metastatic cancer isn’t like that Maura, it hides, it incubates in invisible cells, it comes back.” Not good…

A very close friend, who is trained as a nurse practitioner had recently retired, came to stay with me. Within a week, she had me out walking and able to manage on my own. She was most encouraging. My faith in healing was renewed. I was better every day. People were so kind. Every day I was touched by some contact that was endearing. People with cancer came forward, told me they had lived with cancer for a long time.

It was the most beautiful time of the year. I could go out every morning after the children went to school, take my dog to the woods and walk with him. (As an aside: I think he knew I had cancer before any of us. I will never forget going to a wedding shower and my husband saying that the dog wouldn’t leave the house . He was determined to wait for me to come back and stay with me. I think he knew. They say cancer cells emit a smell that dogs can detect. I believe it.)

My husband and I started reading about cancer and researching treatments, life expectancies, FDA trials…It looked bleak….

My surgeon told me that the chemo doctor was the nicest doctor in the whole hospital. Maybe, but I did not like her, nor did I like the whole idea of it…Poisoning my entire body seems so crass. I had done my research and was inclined to go with the proven treatment : Taxol/carbo, but was most concerned about the taxol because I am allergic to many trees. Was I eligible for allergy testing? Not in advance. What would happen if I had an allergic reaction? They are right there. They are used to dealing with it. They have a protocol. So I went ahead, reluctantly. What choice did I have? None

The chemo was not kind to my body. The taxol was particularly harmful . I was allergic to the taxol and had to be desensitized, which turned a 2 hour drip into an 8 hour drip. It was an all day affair every 21 days for 6 months, starting June 15, 2008 and ending in November. I counted the days to the finish. However, the joint pains and inflammation continued for 2 years. It did partially arrest the cancer, but was not a complete response, mainly due to dose reductions which I needed to tolerate the ordeal. However, my CA125 had plummeted from 1800 to 10. So I was in remission.

The next year (2009) was about recovery. Fortunately, my husband and I had planned a family trip to the Galapagos Islands after Christmas with very good friends. It felt great to get away…far away….see the world again. I was tired, but okay. We were on a boat, and everything was provided for, It was wonderful. It was the stuff dreams are made of. My husband and I would sit out on the deck at night and enjoy the stars. It felt promising….like I might get my old life back, but it was not the same….nor would it ever be…but I felt fortunate.

Sometime that summer, I decided to bike in the PMC. I was not sure that I was up to the full ride, but I started training. By August, I was ready to do the 48 mile loop .My husband and sister were concerned that it was too much to take on. I fought back. I trained.I ended up doing it alone. I loved it. I loved the spirit of the event, I loved the ride, the people coming out to the end of their driveways to cheer us on.

I especially liked the pictures of the children who are cancer survivors at the end. We were all raising money for the Jimmy Fund. It was an awakening. I was struck by the generosity of the donors…the picnic donated by Whole Foods, the gifts, the tent, the music…all wonderfully uplifting…and the natural high of having accomplishing my goal of riding the 48 miles and collecting more than enough money for Dana Farber…my new touchstone.

August was also the month that my remission ended. “We found something in your ct scan…2 golf ball size tumors. We don’t know what they are”….back to the surgeon, more surgery….one was cancerous and the other was not. My surgeon and I have discovered that I recover well from surgery…no adhesions, no complications….up and walking and out the door as fast as possible. It was the beginning of November. My family was skiing by Christmas and I was walking, and hiking around the mountains with the dog.

I had recovered….just in time for my CA125 to commence its climb again. Now there was a spot on my liver, Dr. Matulonis informed me. I qualified for the BSI trial. I would start with Gemcitabine, Carboplatin and BSI. After achieving remission, I could go on BSI alone….Alleluhia!! Because it is a targeted therapy, it works specifically on the cancer cells, keeping them in check at the cellular level. This is as good as it get in cancer treatment because it doesn’t seem to have side effects. In spite of the frequent visits to Dana Farber for the infusion, I am satisfied.

I know that because I have the BRCA mutation, this will be an ongoing battle. However, I have faith in my doctors and trust Dana Farber to do all that I can for me. Everyone has an uncertain future, but my disease gives me a heightened awareness of that fact. I don’t have to fight this battle alone, or without the latest medical advances. I have a greater appreciation for my life. I wish there was a cure, but my hope is to enjoy life now, make it meaningful, make it good, make impact. And just like Gleevco and AZT, medical miracles do happen. Just like the anti- HIV drugs that are now routinely prescribed, we can allow human life to continue. For as my father would say, “Life is not a dress rehersal. This is the real thing.” It is Springtime. I am renewed, that is my message of hope to you.

Maura L. Perkins

April 8, 2011

It's been awhile

I have been clicking along on my new targeted therapy, BSI, which is a PARP inhibitor. I have going to Dana Farber twice weekly for my infusions in 21 day cycles. I have been able to apply for deviations from protocol, which has allowed us to travel to Switzerland in August for 10 days, (heaven on earth) and to St. John Island after Christmas (wonderful), and to ski over February break. It has been fun to finally feel like myself again and be able to fully-participate in activities with my family. However, last week, I was diagnosed with squamous cell (skin cancer) on my nose, which will be surgically removed on 4/26 (Bill's birthday). A CT scan also revealed a discrete 2 cm mass on my vaginal flap, which will hopefully be removed laparoscopically on 5/2. It may mean that my cancer is out of remission, or it may be an isolated incident. We don't know...To be continued...

Summer is Here

Cancer News:I finished my chemo in June, thankfully, but have opted to continue on the clinical trial. The study drug is one of a new class of targeted therapies, called PARP inhibitors. The objective is to kill the cancer cells (by preventing them from repairing damage caused by the chemo). Although it is by infusion every 4 days, in 21 day cycles, with a week off in between. Typically CT scans and MRIs are scheduled for the week off, so it never ends up being totally free.

I have learned good ways to get to Dana Farber from South Dartmouth.

I have just enjoyed a drug holiday by visiting very good friends on Fishers Island. It was very lovely. Our friends were gracious hosts and hostesses.

I am hoping and planning to get a team together to do a small version of the Pan Mass Challenge to raise money for Dana Farber, specifically for research on ovarian cancer treatment. It is August 8th, Wellesley to Wellesley, which is 47 miles. If you want to be on the team, you can register for "Good Eggs". The PMCID is 58737-4. If you want to make a gift, the egift account is MP0203. Thank you in advance for your support.

Six More Treatments Before Summer

Hi all!
I have some more chemo treatments to get through. I would appreciate some rides. People have been generous about their offers, but I got off schedule with low blood counts and have had to re-schedule. So if you are interested, the following dates are "open": Friday, June 14th, 7:30 am; Monday, June 17th, 8:00 am. Thereafter, the dates will be scheduled after Thursday, June 3rd. I would expect on the Monday, June 7th; Thursday, June 11th and Monday, June 14th (also Nathaniel's last day of school).

These will be followed by CT scan and possible radio ablation of the liver tumor, if any remains. I have been offered the trial drug, indefinitely. Since it is not yet approved by the FDA and is not commercially available, I may opt to stay on the PARP inhibitor for awhile (at least as long as it is effective). This would mean that I would continue with infusions, since it is not available in pill form (unfortunately). So I would still be going into Dana Farber on Days 1,4,8,12 for an infusion of BSI-201. I would then have an 8 day break and start and new cycle.

I am enjoying this Spring and a new garden which was put in last Fall with the help of friends. It is a wonderful retreat for me when the weather is nice. Also I am looking forward to migrating to our summer home in June.

With best wishes,
Maura