Tom’s Ride to Aid Cancer Survivors

Stories

Laurie’s Story

Our cancer journey began in June 1997 when my seemingly healthy husband of seventeen years, Tom, was diagnosed with adenocarcinoma — colon cancer. As the parents of 3 children, ages 16, 15 and 10, we were devastated by this news and felt numb, completely alone and unprepared to move forward. Following the successful surgery to remove the tumor, our doctors suggested adjuvant chemotherapy and radiation over an 8-month period to eliminate the possibility of a recurrence. With the love, support and encouragement of our family and friends, as well as our local community, many of whom we didn’t even know, we were able to get through what we thought was the longest winter of our lives.

The months following the surgery and subsequent treatment were agonizing for my husband as he continued to experience severe, constant pain and debilitation. Despite our repeated doctor visits and after numerous CAT scans, biopsies and bloodwork, all of which were “normal,” the pain continued to worsen. He remained, however, determined to continue working and volunteering in our community as he had always done. He never lost sight of his personal commitment to regain his strength and provide for his family, as he always put others’ needs before his own.

Tom’s Positive Attitude Inspires
Tom’s positive attitude and calm reserve was inspirational to everyone with whom he came into contact. He very rarely complained, despite his now constant pain, and remained hopeful that things would improve. During this time, he was asked by his doctor to appear in a series of colon cancer awareness television interviews to discuss his personal story to help others understand the importance of screening and early detection. Despite the reluctance of many to speak publicly about such a private topic, he agreed because he felt that it was his opportunity to make a difference in the lives of others. He honestly felt that if his story encouraged even one person to get screened, it would be the most proactive way he could deal with the hand he had been dealt.

Our surgeon attributed Tom’s pain to scar tissue caused by the surgery and the radiation, and in the late winter of 1998 recommended that he have a temporary ileostomy to relieve the situation and give everything a chance to heal. By late spring of 1999, after nearly 2 years of intense pain and frustration, Tom was getting worse and we once again returned to our doctor to insist that more tests be done. We were quickly learning the importance of self-advocacy. Finally, in May 1999, a biopsy revealed recurrent cancer and we were referred to Dr. Harold Wanebo at Roger Williams Medical Center in Providence, Rhode Island. He was considered a world-renowned surgical oncologist, one of only two in the United States that would be able to address this type of recurrence.

A Radical Solution
After our first meeting we realized that our options were very limited, and he recommended an abdominal sacral resection (ASR), a surgery that only he and one other surgeon in the world perform. To date, only a little over 100 patients have undergone this extremely radical procedure. He explained that it would require two 14-hour days in surgery to remove Tom’s colon, rectum, prostate, bladder and sacral bone. The hospitalization would be from 6-8 weeks, three of those in Intensive Care on a respirator. After a few agonizing days of tears and prayers and talking with our children and family, we decided that we had to try. The surgery was preceded by a procedure called a pelvic perfusion, which in itself was a very dangerous undertaking. The procedure isolates the pelvis and delivers very high doses of chemotherapy to the proposed surgical area, which hopefully give us “clear margins” and eradicates any cancer cells surrounding the actual tumor. This was performed in July 1999, and after three weeks of hell, a weight loss of 30 pounds, and many sleepless nights, the ASR was scheduled for August 16, 1999. Again, not once during this time, did Tom complain or feel as though he wanted to give up. He was determined to do everything in his power to get well and live to see his children grow up. This was his focus and I believe it was this, his faith, the love of his family and friends, and his belief that there was a higher purpose behind it all that helped him to face this challenge with grace, dignity and hope.

The surgery was successful, by medical standards, in that they once again felt that they had “gotten it all.” What followed was 8 months of relearning to walk, having to adjust to a colostomy and a urostomy and the subsequent permanent physical limitations that a surgery of this magnitude creates. His back wound was “open” for six months and was finally closed in February 2000 with extensive plastic surgery. Tom underwent one year of intense physical therapy and set as his goal to once again ride his beloved motorcycle! This he accomplished in the summer of 2000, which resulted in Dr. Wanebo giving him the title of his “poster child.”

The Persistance of Cancer
Unfortunately, our story continues as there have been two more recurrences since then. In May 2001, another pelvic tumor was detected and Tom underwent a 7-hour surgery in July 2001. The doctors felt that due to the location of the tumor and the lack of nerves in that area, it would have gone undeteced had we not remained vigilant. Following a 6-week course of radiation, Tom began chemotherapy in January 2002. Two “rounds” into the treatment, a routine blood test showed an elevated CEA which was indicative of the possibility of another recurrence. After a CT and MRI diagnosed the situation as “normal and inconclusive,” our doctors suggested that we wait 6 weeks and repeat the tests at that time. We rejected the idea of waiting and insisted that a PET scan be ordered, as that was the one test that had been consistently reliable. The results verified our fear that the cancer had indeed returned. We once again returned to Rhode Island and surgery was performed on April 1, 2002. There were 2 small tumors located very near the site of last summers’ pelvic recurrence.

We are finding that it is becoming more and more difficult for Tom to “bounce back” as he has endured so many assaults on his body. He is now at home recuperating and looking forward to feeling stronger so that he can once again get back to his life and to riding his bike. His positive attitude and his plan to “live until I die” continue to astound everyone around him. His doctors say that we are now in “uncharted waters,” yet we still remain optimistic that we can beat this horrible disease.

Tom’s Heroics
The surgeries have prevented him from doing many things that he used to love, but Tom has not allowed this disease to take from him the ability to smile and recognize the beauty of the world around him, to appreciate his family and friends, to set goals for himself and to help others. He is the most unselfish, caring, loving man I have ever known, and by his example he has shown our children the value of faith and the importance of families sticking together through both the good and the bad times. After all that he has gone through, it would never occur to him to be concerned about himself. He always puts the feelings and needs of others before his own.

We often talk about the events of these past 5 years and have realized that despite the horrors that he, and we as a family, have endured, there have been moments of pure joy — moments when we have been able to look beyond what we have lost and appreciate and be thankful for all of our many blessings.

In 1999, we were asked to participate in a pilot program at the cancer center, which used photography as a tool for cancer patients and survivors to document their personal journey. Tom was honored to have one of his photographs chosen to be used in the newspaper article featuring the story. His picture was taken through the handlebars of his motorcycle looking down a long, country road. The quote he chose to accompany his artwork (from a poem written by Father Patrick A. Martin) was the following:

A log in a stream
doesn’t stop the stream
from flowing,
it merely
redirects it.*

My husband is my best friend, my soul mate, and the bravest person I will ever know. I know that the guiding force behind his efforts to return to good health is his love for our children and me. He will always be my hero.

*Reprinted with permission from Ave Maria Place

The preceding article was written in 2002 for publication in Coping magazine. Between that time and Tom’s death in 2004, our “journey” was difficult, as has been the past 3 years without him. With the inception of this ride in his honor, I have decided that it is important to share the rest of the story with those of you who are supporting Tom’s Ride.

Epilogue
Following the 2002 recurrence we were basically told by our doctors to “go home and put our affairs in order.” Once again, Tom was determined to look for other options.

We finally found a hospital in Zion, Illinois that was willing to see us and consider alternative treatment. For the next 9 months, we flew to Zion every 21 days for chemotherapy. The hospital was one of the best we had encountered and the people we met there were absolutely amazing. The medical staff recognized the importance of treating the whole person and developing treatment plans specific to the individual and their unique needs. They were willing to deviate from the protocol that had frustrated us so much in the past and included nutritional counseling, spiritual counseling and mind/body therapy. We truly wished that we had found them in 1997 when everything began.

However, despite the wonderful care, 6 years of chemotherapy had taken its toll and we decided to discontinue  treatment. We came back to Connecticut where we were accepted into an experimental treatment program in Torrington. The treatment was administered every week and after 6 months it became clear that we weren’t going to achieve the results we had hoped for.

In January of 2004, Tom had kidney failure and we were given the choice to “do nothing,” which would result in a fairly quick, painless death, or allow the doctors to proceed with a minor surgery that would give us a little more time. We decided we weren’t ready to say goodbye and following the procedure we went home. For the next 5 months and literally until the day he died, Tom remained optimistic and hoped and prayed for a miracle. We were sustained by the love and support of our children, our family and our friends.

On May 26, 2004, I lost my best friend and these past 3 years have been incredibly hard. I am only now beginning to realize how much stronger I have become as a result of this experience. I have learned many important lessons, and like Tom, have come to believe that it all happened for a reason.

Recently Tom’s mom, Hope, told me a story that really had an impact on my decision to complete our story. The basic moral was that sometimes we get so caught up in our grief over losing someone that we forget to honor the person. In other words, we honor our grief instead of remembering all that was incredible and beautiful about our loved one and the life that he/she lived. So I consider this ride a way to honor Tom’s life and his sincere wish to make a difference. Thank you for your support.

DONATE TODAY!