Episode CXVI - I felt so good like anything was possible
I wanted a comprehensive look at my cancer side effects. I wanted someone, somewhere to actual look at all my scans, tests, and reports as one collective cohesive sum. I was tired of multiple specialists doing one thing and then sending me to someone else to handle something else. It seemed no one taking my whole health into account other than my family doctor.
So, like normal... I was going to be my own advocate and search for my own answers.
Thank goodness for the vast information on the Internet (even if sometimes that can be negative too). I searched and found nothing at first. After I changed my wording for like the billionth time, a few hospital and treatment centers showed up having survivorship clinics... interesting!
I had no idea about what a survivorship clinic was but, I was intrigued. I began to search for one close to me. It took a while, but I found that Vanderbilt had one. When I read the mission statement I was interested:
The REACH for Survivorship Program is Middle Tennessee's first dedicated Cancer Survivorship Clinic. We serve all survivors regardless of age, type of cancer or treatment location. We help meet the unique needs of pediatric and adult cancer patients and serve as a bridge between specialist cancer care and primary care.
The cohesion of specialist care and primary care was exactly what I was looking for, so I immediately emailed them with a short summary of my history and concerns. After a response email and a phone call, I was scheduled for an appointment.
Click here to find a cancer survivorship clinic near you.
Vanderbilt is not far, but it is not close either. It was going to be a day trip and I needed help. My mother drove in town to take care of my kids and I had a friend drive me up to the appointment. Thank goodness for the many people in my life who care about me.
Getting ready for Vandy!
Sometimes friends just fall into place. She happen to me that way over the past year. We are both raising kids in the same high school and she unfortunately just dealt with breast cancer too. We have different types of cancer and opted for different treatments, but I knew she would understand anything I might say during the visit.
It is funny. I have no issue (any more) about having people with me to see a doctor. In all honesty, I would share my medical history on here if I knew it was going to help someone. Heck, I pretty much am right now!
Any sense of shyness or privacy almost fades away after cancer. Especially with other cancer alumni - we are part of some unsolicited club that unites us. No matter what type, treatment, or choices we have made... there is an unspoken understanding. We also use each other's experiences as resources. While cancer sucks, the people I have meet through cancer are amazing!
The Vanderbilt appointment was informative and refreshing. I was not treated like my symptoms were abnormal or unheard of. I was not treated as if I was the only one with post-treatment problems. The doctospent two hours with me when I was allotted only 1-1 1/2 hours.
Not only had she looked over my chart (which was more than my last Onc visit), she had summarized my care. I was given a detailed medical cancer history form listing all my treatments and what those treatments could cause to keep with me and give doctors in the future. This immediately spoke to my nerdy organizational management background. This was something that she said should be standard now. And something neither me nor my friend had gotten from our cancer center. It was really cool!
My complaints or concerns with Tamoxifen were acknowledge. She discussed that I could take a short break from Tamoxifen (15 days) under my Oncologist care to see if I felt better. Then I could make a decision on having a hysterectomy and try new medications or get back on Tamoxifen. While they still do not recommend me getting off because of my high risk rate for future cancers, they were willing to work with me.
We went over my long list of issues, which if you have read any of my blog know are many. It was nice to not be looked at like I was complaining about unheard of complaints. She felt that the many symptoms I had are treatment induced and that they may or may not go away.
Since I have so many problems, she said I would probably be a symptom treater. Basically, I need to treat and manage each symptom. She suggested PT, OT, and finding different options to treat the many treatment induced problems I am having. We discussed alternative options including pain management. Nothing was off limits! When I suggested something different she listened and found ways to work with me.
She was the first doctor in a long time to not ask me about my mood because I was complaining. So, I asked her. Her response let me know that she understood. She said she could tell that I was not depressed just frustrated. True!
There was no judgement. There was no you have to do anything. That my quality of life mattered. That my input about my health mattered. She was on my team and was willing to get me in with whoever I needed to help my care. Like I said, it was refreshing.
At the end of the visit she looked at all of my lumps, bumps, and complaints. Her reaction was so different then the NP I just saw at the cancer center. She said that if I had an established doctor there they would do an ultrasound on those areas that day. They were proactive and I like that. It is always better to be safe then sorry.
Sadly, I do not have a doctor there so I was going to have to go back home and call my Breast Surgeon to schedule everything. The Oncologist NP had already looked and ignored those things, so I was too frustrated to deal with them again. Hence, reinforcing the fact that I needed a new Oncologist!
I left the appointment with things to do, books, resources, and referrals. Most importantly, I left with options and hope.
In my head...
The facilities and people at Vanderbilt were great. They even have free classes for cancer survivors that encourage health and wellness. I was impressed with all they had to offer, but disappointed I could not use it all do to location... because I would.
My friend and I left the appointment with a lot to think about. We were both almost taken back at the lack of judgement towards the patient. Our experiences have been different. There has been almost a irritation if you question (or in her case actually choose a different) treatment. It was nice to feel like our questions were not some secret plan to undermine the doctor's knowledge and ability.
In the end, we have to live in our bodies. We have to live with the treatment. So, we should be part of the decisions.
I can say one of the best parts of the trip was that we made it a girl's trip. We drove around Nashville and talked about things we might like to do next time. We went out eat before and after. And we talked and talked... and talked. It was nice to have someone else's view on the appointment and the choices I was considering. Especially someone who is facing a lot of similar choices.
By the time we got home I was feeling tired, sore, and hopeful!
Episode Reference: Runnin' down a dream,
Tommy Petty & the Heartbreakers song