Starting Over

Yesterday I had an appointment scheduled which I nervously anticipated. After months of anxiety and worry, I was meeting with a doctor to develop a plan to treat the cancer. My mind has been spinning as I have been contemplating worst case scenarios. The impending appointment felt much like my day of reckoning, where I would learn my fate.  The fact that my treating physician of 10 years left the practice, and that I was beginning a relationship with a new doctor, added to my uneasiness. 

Only one week post-op from my major revision, getting to the appointment was a Herculean effort. After helplessly watching my mom juggle Timmy, his car seat and my scooter to the car, I crawled down the stairs to assume my position in the passenger's seat. After the limb trauma from the day before, my limb was quick to anger and began cramping and thumping almost immediately. The leg pain, along with hearing my mom complain about the difficulties of infant car seats,  served as a welcome distraction from my growing panic.

After wheeling my way into the hospital and up to the office, I proceeded to the check-in desk while my Mom sat in the corner and tried to calm Timmy. ( Poor little buddy was bright red and sweaty from voicing his displeasure during the entire drive.) Soon after signing in the receptionist called me to the desk.  She looked at me with confusion and said, "Mrs. Chenoweth, your appointment isn't until July 17th."

I spoke with the office on Monday about my Thursday appointment, so I knew that the receptionist was mistaken. I also explained that I had received a confirmation call yesterday, reminding me of the appointment and threatening to charge $25 if I failed to show. I explained this information, and patiently waited for her to verify that she had made a mistake. 

She was insistent that I was not on the schedule. I asked about the confirmation call I received, and she contended that the call should be disregarded because they don't have room in the schedule to see me today. I felt the tears begin to well as I struggled to maintain my composure.  I have been dreading this appointment, and the thought of putting it off for a month was simply too much to comprehend.

I took a deep breath and explained that I did have an appointment, and that I needed to see the doctor today. I calmly stated that I needed to know my test results because a cancer diagnosis without a plan is cruel and unusual punishment. I continued my plea for them to honor my appointment by explaining the difficulty I had making it to the office because of my recent surgery.  She remained stone faced and unmoved.

Despite my attempts to employ logic, to provide proof of the facts and to elicit sympathy for my plight, I was unsuccessful. After enduring an emotional tornado as I prepared for the meeting, I left the office lacking a direction and information. I felt completely deflated. I felt invisible and broken.

After licking my wounds for the majority of the afternoon, I finally managed to channel my despair into anger. I can't believe the complete disregard for my health demonstrated by the office staff. I just had a baby, have been battling a severe uterine infection and was diagnosed with cervical cancer.  None of these significant health issues, all of which they have been treating, were rated higher than their scheduling snafu. I was given an appointment for July and sent out the door.  After shedding a lot of tears, I came to the conclusion that I need to seek more compassionate medical care.

I reached out to trusted friends and was provided with a recommendation for a new doctor. The doctor who had been treating me was no longer at the practice, so I was already starting with somebody new. If I have to start over, I am going to seek more compassionate, and competent, care. In my opinion, the front staff personnel are a reflection of the values of the practice.  Obviously, patient care and compassion were not the priorities of the previous facility.  Today I will seek an appointment with a new doctor, and hopefully he will be able to see me quickly.  Waiting for answers to these looming questions is torture, and I fear dangerous. I need to move quickly.

Dr. Doogie

Yesterday I crawled down the stairs (literally), cursing our decision to purchase a non-accessible home. Thankfully the occasions I am without my prosthesis are limited, but when they do occur I find myself frustrated and limited. Navigating through tight doorways, trying to wheel over transition strips and crawling up and down the stairs make it laborious to move between rooms. The next time we purchase a home, I am going to be more aware of my accessibility needs because feeling limited in your own home stinks!

After trudging my way downstairs, we hopped into the car and headed to the doctor for my first post-op visit. My new doctor is about 45 minutes away, which is a vast improvement over the 2.5 hours I used to drive. While I still have the utmost respect for my surgeon in Baltimore, the distance coupled with the difficulty scheduling an appointment led me to look for a local option. Dr. B came highly recommended by Elliot (my prosthetist), so I had no doubt I was in good hands.  I know that Elliot would not steer me in the wrong direction, especially since I'm both his patient and employee.

Although I was content with Elliot's endorsement, I was nervous meeting Dr. B for the first time. I knew that this individual would eventually have me on a table, wielding a knife over my unconscious body. If you think about it, that type of relationship requires a lot of trust!

When we first met, I was surprised by his youthful appearance. He immediately demonstrated confidence and competence, yet I found myself resisting the impulse to call him Dr. Doogie while offering him Chips Ahoy cookies. With age has come wisdom, and I know that it is not advantageous to insult the doctor with the knives.

Sitting in my geriatric electric lift La-Z-Boy recliner, I've sadly concluded that I am at the stage where my age surpasses that of most of my doctors. The same holds true for Timmy's specialists,  Robby's most experienced teachers, his speech therapists and all of his hockey coaches. I am now older than the majority of the professionals in my life.

Although my limb is still painful and sore, I know that Dr. Doogie did a great job. I am healing well and soon will be back on both feet. Not as soon as I would like of course, but perhaps impatience comes with age. Perhaps it is time to investigate some home modifications, after all I'm not getting any younger.

Change

Today is Robby's last day of school.  It feels like a lifetime ago that I was packing his lunch and nervously preparing to embark on this new school adventure. Looking back, I can't help but think that change has been the theme of the year.

We began the unintentional trend by changing Robby's school. The transition was easy for him yet angst ridden for me. I worried about everything, from the curriculum to his making new friends. My new school fears evaporated when, after picking him up on that first day, he told me that he loved his new school and can't wait to go back.

A month into the new school year I became pregnant. Although Robby didn't learn the news until January, when he not so lovingly sealed himself inside a box for two hours, the impact the pregnancy affected all of us immediately. I was vomiting so frequently that it became second nature for Robby to say, "Oh that's just my Momom getting sick again."

I wasn't able to take him to the park after school due to pregnancy exhaustion. I went to bed at 7, leaving the nighttime rituals to his Daddy. Meals became whatever I could prepare without vomiting and heaving. My roles had changed, but thankfully his Daddy was there to pick up the slack.

Robby had ear surgery in October, and it was successful in restoring some hearing.  After the procedure his school ramped up his speech therapy. In March I learned that my little Koopa no longer qualifies as a student with a moderate speech impairment. He has been downgraded to mild, an improvement I attribute to his wonderful teachers and staff at his new school. I was so happy to sign off on this change of category!

His teachers work with him to bring out success, not failure. When Robby was afraid to read in front of his peers, they asked for help reading to the babies. Reading in front of the infants built his confidence to the point where he is now reading to his friends. This flexibility is something that I cherish about his school, and the reason for his successes this year. Reading to the infants also helped acclimate Robby, giving him a glimpse of what to expect when becoming a big brother.

In April Robby experienced one of the biggest changes in his life by becoming a big brother. Although he is not terribly fond of the newest member of our family, he has embraced his role and responsibilities. Every once in awhile he says, "I don't like Hamlet. But I know that I have to be nice and I'll make sure that nobody kicks him in the weenie." I feel sad that he doesn't like little Timmy, but I also know that the fact that he feels protective is a huge step in the right direction.  At this point, I'm happy for baby steps.

Through all of these changes, his school has been a constant. Switching schools, although a difficult decision for us to make, was the best thing we have done for him. He is thriving, and I couldn't be happier. Last year Robby practically skipped to school on his final day, anxious to put the year behind him. This year he is asking if to attend some of the summer programs because he is going to miss his friends and teachers.  What a difference a year makes!

Helpers

This past weekend is nothing more than a medicated blur. After nearly two days of dutifully following all doctor's orders, the pain finally faded to a tolerable level. Mind you this doesn't mean that I am pain free or even comfortable, but the fact that I am no longer trembling and fainting is a move in the right direction.

Thankfully my mom has been here to help. Taking care of Timmy while enduring the severity of pain I was experiencing would have been impossible. It was reassuring to know that he was being taken care of, and was being cuddled and loved, when I was unable to be there for him.

Robby has been a wonderful helper. Eager to bring me ice packs, drinks of water or a turtle for company, he has happily honored every request. This is the first time he has seen me debilitated by pain, and he has risen to the occasion.

I also know that my helpful little Koopa also has been worrying about me. I received an email from his teacher Friday morning, informing me that Robby had been crying and fretting. When I read the email to my mom she agreed it would be best for him to come home. She picked him up early, explaining to him that between Timmy and me, she needed his help. He eagerly accepted the responsibility and spent the afternoon being the best eight year old caretaker ever.

Now that the pain is responding to the medication I am definitely more comfortable. I would not recommend a re-amputation surgery, but in the long term I know I will be happy with the decision.  At least, that's what I keep telling myself when my leg is in the midst of another torturous cramp.

I would be remiss if I didn't wish my husband Scott a Happy Father's Day.  Our boys are lucky because you are their Daddy.  Love you!