A cancer diagnosis is by itself a devastating and life-changing experience. When coupled with bad health care experiences and the need to seek care far from home, the problems can seem insurmountable. At a time exactly like this my partner and I discovered two wonderful cancer resources that changed our lives. They may change yours as well—especially if your path is strewn with some of the additional obstacles that we encountered.
It began when my partner was diagnosed with prostate cancer. We had no idea where to go for help, so I asked my primary care physician for advice. He suggested a prostatectomy because if there were problems later, radiation and/or chemotherapy could be used as follow-up treatments. Then in a doctor’s waiting room, I picked up a newspaper article about robotic surgery for prostate cancer. At the time it seemed providential. We quickly made an appointment with the surgeon featured in the article. He seemed very straightforward and we felt we were in good hands. He assured us the cancer was in the early stages and that everything should be fine.
After the surgery my partner’s PSA began to increase. Since the prostate had been removed, we were alarmed. The doctor passed it off and suggested we wait and watch but the PSA continued to climb. When we went back again asking for answers, he said there was nothing he could do and to go find a radiation oncologist. Needless to say, we were shocked at his attitude. Even worse, he never told us after surgery that the cancer had penetrated the capsule.
The new doctor did tests and realized that the cancer had metastasized. She sent us to a surgeon who said he would not operate until the PSA reached a certain number. We were not remotely pleased with that prospect because the PSA was still steadily climbing. As a last resort we decided to have consultations at Memorial Sloan Kettering Cancer Center and the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.
We made the long trip to Sloan Kettering but were not pleased. The doctors we met seemed unprepared even though the medical records had been forwarded to them. It made us have second thoughts about seeking treatment with them. Then an appointment at Johns Hopkins became available. When we met with that oncologist he looked so young we felt as if we were in a Doogie Howser, MD TV show. But he immediately made us feel at ease and accepted. He congratulated us on our 43 years together acknowledging that it could not have been easy for either of us.Then he told us about a clinical study that he felt would be perfect for my partner. We filled out the paperwork and waited to find out if he was accepted—which he was. It was the first time in months that something hopeful had occurred. Then came the realization that we would have to stay in Baltimore for several months. How were we going to manage that?
Thankfully someone told us about Hope Lodge, a free residential facility for cancer patients coming from great distances for treatment. It was just what we needed! There was a waiting list so we immediately signed up hoping a room would be available in time. Soon after, we got a call saying there was an opening, so we began planning to be away for several months.
Each patient at Hope Lodge must have a caregiver living in the facility with them. I was glad to stay with my partner, but I had several concerns. Would it be a problem that we were a gay interracial couple? How would the other residents accept us? Our fears were alleviated when the director of the facility and the staff met us and welcomed us with open arms. The other residents showed us the same hospitality. There were about twenty-five of us all together including caregivers and patients.
At Hope Lodge everyone is responsible for preparing their own meals. There is a huge kitchen and everyone has space provided in a refrigerator and in cabinets for food storage. As I prepared the meals for my partner I got to know other caregivers and we would often sit together in the dinning area with our loved ones. We ended up bonding with a couple whose wife had brain cancer.She had been through a lot of treatments and finally came to a point where there was nothing more that could be done.She talked with us about making a decision to go home and prepare to die. We listened intently to her as she talked having quality of life rather than quantity.She wanted to spend the remaining time she had with her two daughters and husband.We knew how difficult this was for her and offered our support. It was a tearful time when we said our goodbyes knowing we would never see her again.She smiled and thanked us for our friendship.
One day when my partner came from a radiation treatment he told me about meeting a young Black woman in the waiting room.He said that she looked very weak and depressed. He walked over to her and started talking.She broke down and said that she was at the end of her ropes and did not want to continue treatment. She said she would rather die than continue. He held her and encouraged her to try just one more time.He told her that he would be there to support her. One of the issues she was confronting is that there was no one to support her in this process. Since this was near Christmas time my partner went out and purchased a Santa hat and a red shirt for their next appointment. When he saw her he gave her a little bag of candy and she laughed and said you are my secret Santa because he had a white beard too! From that moment on she bonded with him and he was her sole support source. After every treatment he was there to talk with her and encourage her. She shared with him her love of horses and he suggested she visualize herself riding her horse.Giving her something to focus on was just what she needed. With his help she made it through the rest of her treatments and blossomed into a vibrant person again. She told him that without his support she would not have made it. She stayed in touch with him after recovering from her cancer and was able to ride her horse again! She thanked him for saving her life and giving her hope! Every now and then she surprises my partner with a phone call.
Then there were times when I had to find my strength to support my partner, especially when he had radiation burns as a result of his treatment. It was not easy because there was little I could do to ease the pain. The worse feeling is looking at someone you love suffer knowing there is nothing you can do to help them. At one point we had to stop the treatments because the burns were so excruciatingly painful and his skin was in such a fragile state. We did eventually get a cream that I could apply but it really took some time before it began to have an effect. The results of the burns lasted close to a year. Recovering from that was a very slow process.I was really stressed to the max over this situation.I eventually found that a massage therapist came to the lodge once a week to give free massages for caregivers. This was exactly what I needed. It helped to calm me down and lower my stress level.
When my partner felt better we would go out for a little walk. There was a farmer’s marketplace within walking distance where we could get fresh fruit, vegetables and baked goods. We loved going there because it made us feel normal and not like we had a cancer cloud hanging over our heads.
After being at the lodge for a few months we learned about PALS SkyHope. This volunteer service provided free medical and compassion flights for patients between a treatment facility and their home. This was especially helpful to us because we lived a great distance from Baltimore, Maryland. The long-distance drive was exhausting so having someone fly my partner back and forth was a life saver. It removed such a huge burden from us both physically, emotionally and financially.
These two resources, Hope Lodge and PALS SkyHope made what would have been a very difficult time for us bearable. The flights made it possible to spend some holidays together. This is a time when being with family and friends give you an extra boost in dealing with your cancer diagnosis. That support strengthens your willpower to deal with your treatments with more courage, faith and endurance.
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