As a follow-up to surgery, Kim had radiation treatments. In the summer of 1992, she went though 36 daily sterotactic radiation treatments at Brigham and Women’s hospital in Boston. She experienced hair loss, vomiting, diahrea, and all the painful and uncomfortable side effects of radiation. She was also prescribed the steroid, Decadron, to control the swelling in her brain that was a side effect of the brain surgery as well as the radiation treatments. Decadron caused bloating and weight gain, but after her treatments she was able to taper down her Decadron dosage.
Kimberley told me that she felt like a freak after surgery. She lost her hair and had a huge scar on her head. She said she felt very alone. She did not have a husband to help her through this, only a fiancé who could have cared less about whether or not she died. After surgery and radiation, Kim had a new outlook on life. Her stepfather flew back to Florida with her and helped her pack up her things and leave her fiancé. Kim started her new life. Kimberley was a claims adjuster for State Farm Insurance, and she was very good at her job.
Kimberley’s follow-up care after her craniotomy and radiation treatments was to get an MRI every 3 months to check on the tumor site. In 1993, Kimberley had 4 MRI’s that each showed no sign of tumor growth! In 1994, Kimberley had 4 more MRI’s that each showed no tumor growth, and in 1995, she had 4 MRI’s that showed no tumor growth. The MRI’s were all clear with no hot spots!
When Kim told me in February of 1996 that she once had a brain tumor, she said that all of her doctors said that after five years with no sign of recurrence, she would be tumorfree and she would be home free. When we first met in 1996, it had been almost four years of clean MRI’s for Kimberley. We fell in love, got married, and lived happily ever after (yeah, right).
We were married on February 23, 1997. We were both happy, healthy and tumorfree! On April 9, 1997, Kimberley had an MRI that showed a lot of tumor re-growth. This was the first recurrence since her surgery in 1992. In June of 1997, a biopsy of the tumor was taken which revealed that the original oligodendroglioma tumor had changed its pathology to a regrowth of oligo/astrocytoma. We thought, “Great, time for another craniotomy.” In August 1997, Kimberley had her second craniotomy that was followed with radiation and chemotherapy. The surgery was done at Brigham and Women’s hospital in Boston. Kimberley was determined to beat “the beast” and she desperately wanted to live like a “normal” person.
I gathered all the information I could to help Kimberley recover. I logged onto the BRAINTMR e-mail list that was a constant source of information and support. I searched the Internet for “the cure.” Since Kimberley was on chemotherapy, I tried to help her stay as nutritionally healthy as possible. I bought lots of books about nutrition and cancer and also purchased a juicer. Kim drank lots of fresh vegetable juices, like beet and carrot juice. I am proud to say that her blood counts stayed at or above normal levels even during chemotherapy.
Kim’s stitches from her crainiotomy looked just like the stitches on a baseball. She was very self-conscious about her surgery scar, and covered it up with cute little French-style berets. Kimberley and I both loved to travel and she wanted to see the world despite her brain tumor. She had such vibrancy for life! She loved to say, “Lose the attitude!” This was her way of saying don’t worry about the small stuff and live life to its fullest. We decided to take a trip to Europe, she was determined not to let brain tumors interfere with her life.
Europe on Chemo was no easy task. Kim was currently taking her chemo medication in pill form. Seeing the Louvre on Lumustine, Vincristine, and Procarbazine is not recommended and we should warn you that enemas in Europe are not as good as they are in the U.S.! Kim wanted to see all the sights no matter what, and even managed to climb the stairs to the top of the Arc de Triumph in Paris on a 3 Procarbazine day ! I have videotape of our trip and she was so happy to get to the top of the Arc de Triumph, which now seems so fitting as a triumph over brain tumors! Kimberley proved that when people are determined to live, anything is possible!
In November and December of 1997, Kimberley started to get very bad migraine headaches again. She also had focal and sensory seizures because her Phenobarbital levels were not high enough to control her increasingly stronger seizures. She was getting headaches because her Decadron level was not high enough to control her increasingly painful headaches. We were both scared because we knew that this might mean tumor growth. Her doctors increased her medication levels which helped.
Kimberley was still determined to travel and live like a healthy person. She had a strong desire to see the world, and she wanted to go on a cruise. In early 1998, we were on the first day of our cruise and were in our formal eveningwear when Kim had a petit-mal seizure. We went back to our cabin so she could take her chemo medication and her Phenobarbital. With the help of the ship’s Pursers office, an emergency flight home was arranged. Kim was so proud, even though she couldn’t walk; she wanted to be a part of everything. She asked if I would hold her up so she could go outside. I did, and she threw-up. We were able to catch an emergency flight from the ship’s next port in Jamaica. We got home to Florida, and the very next day we went to see her doctor in Boston. During the entire brain tumor process, our 30 or so flights round trip to and from Boston were full fare, even though I worked for an airline. We could not afford to miss an MRI or a doctor’s appointment. This time, the MRI came back “hot” and Kim needed to have surgery again.
For her third craniotomy operation, Kim’s neurosurgeon used the new intra-operative MRI, which was done at Brigham and Women’s. It was a new type of brain surgery when an MRI is taken while the doctor is operating. It was supposed to enable the neurosurgeon to take out more of the tumor with better precision because a constant MRI picture was being taken throughout the surgery. This was a very new technology and a new procedure. Kimberley’s story and her surgery was documented on the TV show, Healthwatch 2000 (even though it was 1998), which was on a local Boston TV news station. We rented an apartment in Boston for Kim’s recovery after surgery. It was a very lonely and scary time for us.
The surgery was considered a success with 98% tumor removal. We were told by the doctors to go have children and live a long, happy, and healthy life together. We were so happy, as we both wanted to start our family and our lives together.
Unfortunately, by August of 1998, Kimberley’s seizures and migraine headaches returned and were extremely intense this time. Kim’s personality seemed to change and she became very angry at times, violent at other times, and sometimes she was very paranoid. It was frightening. She seemed fine when talking to friends and family on the telephone, but other times her personality was completely different, and changed very quickly. Her memory failed her. When I spoke to her doctors in Boston, they advised increasing the Decadron levels and she was put on a protocol of high dose Tamoxifen chemotherapy (in pill form). Kim experienced incredible weakness on her left side and sometimes needed to use a wheelchair to get around the house, which is one of the reasons we bought a ranch-style home. Then Kim started to lose bowel control. When I spoke with her doctors in Boston, they told me that at this point she had about 90 days to live. Kim’s tumor was on its way back and there was nothing anyone could do. No more treatment was available.
I was advised to call Hospice. Kimberley’s wishes were well known to me since we had “the talk” when she was healthy, and had talked about the possibility of her dying. Kimberley had a living will in which she listed everything she wanted and did not want medically if she was unable to make her own medical decisions one day. In her living will, Kimberley stated that she wanted to be kept pain free, but out of the hospital and she did not want artificial means of life support if she was terminally ill. I had a hospital bed set up for her at home to keep her comfortable. Even though I knew we were following her wishes, it was excruciatingly painful to watch her slowly deteriorate day by day. Even though we had nursing care at home and Hospice nurses, I still wanted to be the one who took care of her personal needs and to bathe her. At a certain point, she lost the ability to speak, but I could still see the sparkle in her eyes and her beautiful smile. I knew she understood my words when I spoke to her. There was so much love between us.
Calling Hospice was one of the best things I could have done under the circumstances. Hospice is designed to take care of the entire family when a terminally ill person is dying. The needs of the patient are taken care of, as well as preparing the family for their loved one’s death. Joy was our Hospice nurse, and she was truly an Angel. She made sure Kimberley was kept pain free, and she also made sure that I knew every step that would happen next. She advised me to get all the papers in order, make a list of people to call when Kim passed away, make arrangements with a funeral home beforehand, and she even told me to eat and sleep to try to keep my strength up. Kimberley told me a long time ago (when she was healthy) that she wanted to be cremated and she wanted her ashes to be spread in a beautiful place. Even though I knew the choices Kimberley had made for herself and had written in her Living Will, it was so hard to make the arrangements while she was dying, and to watch her go without food. Her body seemed to be wasting away. She would squeeze my hand and twist my wedding ring around my finger. She became weaker and weaker, and Joy told me that it was almost time. Kim’s hospital bed was set up right in our bedroom so we could be together. On November 4, 1998, at 3:05 am, Kimberley lost her brave battle against brain tumors.