Holly's brave recovery continued though the summer. She wasn't allowed to drive for several months but her family made sure we saw each other often. Bud missed her so he was also included with any meeting.
The visiting nurse checked in with her. By all accounts she was doing remarkably well for what she had been through. Her follow-up appointment with the neuro-surgeon was after Labor Day and all of her scans and tests showed no more signs of a tumor. The decision to do a round of Radiation therapy would be made around the holidays.
I was so glad she was getting better with each passing day. At first I didn't tell her that I wasn't feeling well. It wasn't my legs this time.
Everything seemed to hit me at once. Yet another kidney stone, despite the fact it seemed like I was drinking gallons of water every day. My acid reflux was getting worse. A non-stop, persistent cough was the tell-tale sign. I started to get indigestion in the 1990s, including my favorite, Italian food. Maybe it was age but I couldn't take spicy foods any longer.
I adjusted my diet and got on medication. Then I had a routine colonoscopy and endoscopy and they found Barrett's Disease of my Esophagus. A precursor to cancer.
During the testing they also concluded I had a leaky value in my heart. So that's why I had been so tired lately and short of breath. Between stress at work and worrying about Holly I was pretty tired at the end of each day.
They thought the heart issue may have been a by-product of my O.I. So was the worsening Scoliosis in my back.Weirdly, the trunk of my upper body was slowly turning to the left. I sometimes felt like a Philly soft pretzel. Would I be able to look behind me someday like in "The Exorcist?" It wasn't funny, but I had to laugh for fear of crying.
I was slowly breaking down. Like an old car in need of repairs to keep running, we all age and sometimes need a tune-up. But my problems seemed too sudden, too acute and were more than just the normal aging process.
No one really knew what to expect from someone my age with O.I. It was foreign territory to most doctors.
I didn't suffer full-blown fractures any longer, as was the case when I was a kid, but now the O.I. reminded me of it's presence in chronic ways. I was getting more and more stress fractures now, the kind they really couldn't cast. They would hurt for a few weeks then go away. I was getting them everywhere now- my legs, back, ribs. Arthritis was my constant companion in all of my joints and bones. Whenever they did x-rays or bone scans it was difficult to read the new cracks from the old, as my bones looked like a road map, with all the lines zig-zagging here and there.In that way I was coming full-circle from my childhood.
I began to assemble more and more doctors, most young, certainly younger than me. I now had a Cardiologist, an Endocrinologist, a Pain Management physician, and a Medical Genetics doctor. Those along with my usual family doctor, Orthopedic guy and Urologist. My calendar seemed to be full of doctor appointments as the weeks and months flew by.
The really interesting one was the Medical Genetics doctor. Her name was Dr.. Kaliish and she was excellent. A short, cute blond with curly hair and a nice smile. I found her looking on the Internet at Penn. I typed in Osteogenisus Imperfecti and there she was.
She happened to be one of the leading authorities on O.I. Hardly anyone in the suburbs was familiar with the condition so I was happy to find someone relatively close who could understand what was happening to me.
I began seeing her every six months and she gave me so much information on O.I. that even I didn't know. Turns out I was one of the oldest people around with the severity of brittle bones that I had. Age didn't matter to me- I was just glad to still be kicking, especially after she told me the life expectancy of someone with O.I. was twenty-five years. I had more then doubled the average life span.
She helped make life easier by suggesting different equipment and treatments. Lighter wheelchairs to make pushing easier; a shower chair with a roll-in shower so I didn't need to transfer as often and to avoid slipping and potential falls; special cushions to make sittimg in the wheelchair all day more tolerable; and new medication to help ease the pain.
There still was no cure for O.I. Progress was being made for future patients. My life was now basically maintain whatever positives I still possessed and make life more comfortable. Quality of life was key now.
My worsening physical condition was effecting me at work. I couldn't keep up. I knew it but didn't want to admit it and hid the truth for a long time. I loved my work and and I was determined not to allow my body to call the shots when it came to my future.
In the end my body won. They were watching the heart issue and I was on new medication for the Barrett's Disease. But no matter what I did regarding cushions or wheelchairs or pain meds ( I always hated taking pain-killers), I had to finally come to the conclusion that I needed a change of lifestyle.
I found Holly and had a good life now. The future was worth living. I had another reason to keep kicking. So, I reluctantly took the early retirement package the facility was offering all employees at the beginning of the year. I did so with a heavy heart and a bittersweet feeling in my soul. I would miss my work and my residents but I was still determined to stay active, remain in Social Work somehow and not just fade away.
Somehow, someway, I would always be a Social Worker.
Around Christmas it was decided that Holly should have radiation . Her tumor was the kind likely to come back so her doctors at Penn advised a round of 33 treatments, everyday. She should tolerate it well however one of the side effects was she would lose her beautiful hair.
She trusted her doctors but considered a second opinion. Brain surgery didn't exactly thrill her but frying her brain for over a month was scary. So she did more research and got an appointment with one of the best tumor guys at the world famous Johns Hopkins Hospital in Baltimore, Maryland.
We both had never been to Baltimore before. It was a mild day for January as we made the two hour trip down I-95. The following spring we would venture to Camden Yards in Baltimore to see the Phillies play the Orioles. This journey wasn't as much fun.
The Hopkins doctors also advised radiation. And so it was, starting in March, the Proton beam treatments at Penn would begin.
Funny, we both thought kind of guilty over what was happening. "You didn't sign up for this" was the feeling yet we had found each other for a reason, and now we needed each other's support to get through the tough times.
Holly's radiation schedule varied during the course of 33 treatments. The March weather cooperated. For the most part, so did the infamous Schuylkill Expressway as we made the daily 45-minute commute to the city. We met so many wonderful people there during this time, both staff and patients and families. Young, old, black and white, all races and nationalities. Cancer doesn't discriminate. All brave folks, and we chatted with many while waiting each day.This goes on every day I told myself. It never ends.
On Holly's first day of treatment, as we were sitting in the lounge area, nervously waiting for her name to be called, we heard the ringing of a bell. It was similar to a school bell and it was coming from the other side of the lounge. We investigated and found that a bell had been set up and each time a survivor completed their entire treatment they could ring the bell in joyful celebration.
Holly's day to ring the bell seemed so far away.
She drove to Penn and back daily. I was with her most days. We grew accustomed to familiar staff, like parking attendants and receptionists who warmly greeted us. We met patients who lived both locally and who temporarily moved to Philadelphia until their treatment was over. Some were getting both radiation and chemotherapy. Things could always be worse.
I felt especially bad for the children. Many had lost their hair. many looked so tired and worn-down. But many still wore big smiles, knowing that with each treatment they were coming closer and closer to the end. Hope was a key word I heard often at Penn.I was touched by the courage I witnessed at Penn and remembered how I felt as a child, going through so much frightening procedures. I admired the kids even more because, in a small way, I could relate.
Holly didn't get sick form the radiation but, as the doctors predicted, she started growing more fatigued. Some days she had her treatments and then met with the radiologist, Dr. Lustik. Everyone was so reassuring and positive yet honest and carefully explained every detail.
I think the most support Holly needed through the entire ordeal since she found out about the brain tumor was when she started losing her hair. I'm sure she worried how it would effect me. The answer was not at all. She was beautiful, no matter what. Maybe even more so now as her inner beauty was shining through.
I held her and whispered that I was there for her.We cried together.
We traveled in the area to find an appropriate wig, as they warned that her hair may not fully grow back for close to a year. The wig was pretty close to what her hair had looked like before treatment. She also wore hats and caps and bandanas. Holly was far from vain but I understood how this deeply effected her.
Day after day, time after time, the treatments came down to a final dose. That last day was fortunately the only time we were caught in a traffic jam on the expressway. God was on our side all this time and we were lucky to avoid most accidents, closed exit ramps, and road projects that may have presented an obstacle.
After the final treatment Holly proudly stepped up to the bell, after several other patients took their turns , and she triumphantly rang the bell and smiled as cameras flashed around rher.
In that instant Holly officially went from patient to survivor.
No comments:
Post a Comment