I find myself learning to control my emotions as I watch my husband deal with increasing pain from the sarcoma in his hip. Often, this scene of Shirley MacLaine’s character in the film “Terms of Endearment” pops into my mind. I understand her sentiment more than I ever have prior to this month. Thankfully, I’ve been able to keep my cool to observe and be present for the struggle.
Navigators are good.
I am generally pleased with the care Travis receives when we visit any office that works with oncology patients. Learning about nurse navigators has been the sunbeam in this gloomy process. We have benefited at both hospitals from excellent nurse navigators. Those nurses are always on the side of the patient and work to communicate on behalf of the patients. Despite how slow I feel our appointments are happening, once we visit the specialist, we realize how lucky we are to have the appointment as soon as we do.
Another amazing individual dropped in to see Travis while he was at St. Francis to receive an injection, a financial navigator. She called while he was in the treatment room preparing for an injection and instead of talking on the phone, she came to see us face to face! First, she introduced herself and then asked, “do you want financial assistance for this treatment?”. Feeling a bit dumbfounded, I kept silent while Travis quickly said, YES!
She also informed us that we have a positive balance in the community hospital system so from here on out just ask to be billed instead of paying a co-pay. As the Hamrick household accountant, I loved this information!!!
The broken parts…
Insurance, the necessary evil.
Generally, I find that insurance policies are one of the broken parts of health care. Prior to this cancer journey, the insurance blocked medications and tests that a doctor requested. I believe that a Pelvic CT scan request last year would have revealed this sarcoma sooner. The scan was not approved by insurance Because it was not part of the area of surgery. Insurance has paid for so much of Travis’ treatment that I cannot complain too loudly; however, there is room for improvement. I think the checks and balances between the prescriber and the insurance company have gone awry.
Prescriptions.
Travis also struggled with medication approval for his ulcerative colitis. The doctor prescribed a weekly dose and insurance said it wasn’t medically necessary and failed to explain why his medication was cancelled. He missed a dose which started to cause problems in his body. Eventually, he had to use a PTO day to investigate which meant navigating insurance, the mail order pharmacy, and the doctor. At the end of that week, he had it all ironed out, but I still believe those three entities need to communicate better.
I will not start about our local pharmacy that starts with the letter ‘W’. Let’s just go with my confirmation that palliative care is amazing when it comes to getting around the pharmacy red tape. So much, that I wish other areas outside of oncology had some kind of advocate for medications that have nothing to do with pain management.
Billing.
This one has us scratching our heads about what we actually paid for when we paid our co-pay for this biopsy. I guess the hospital contracts out a radiologist to read the biopsy or maybe they had to bring in a special radiologist for this 2nd biopsy? I am sure there is a wonderful accounting reason that this occurs or maybe it’s like when I tell my students “There is no ‘why’ here, that’s just the way it is.”
Vacations set us back.
Delays in treatment for Travis can be partially attributed to doctors going on vacation in the month of June. While I cannot fault them for that, I still don’t like that we continue to wait to begin radiotherapy. We have one more doctor to visit, the orthopaedic oncologist at VCU. Once he has his say in the course of treatment, Travis is ready to see the radiology oncologist for simulation and then treatment! I pray that it will begin next week, that we don’t have to wait for the MRI on Friday.
I did learn, from Dr. Poklepovic, that a radiologist reads x-rays and other scans; while a radiology oncologist is the one who approves the math and makes the radio therapy happen. Every day is a learnin’ day!! So, forgive my ignorance from the last post. The radiology oncologist, not the radiologist, guided us through the CT images last Friday at VCU.
Bon Secours Cancer Institute at St. Francis
I took these pictures during our most recent visit to St. Francis. This building is a beautiful setting, filled with lovely people, who work together helping anyone suffering from cancer. The nurse helping Travis on this day said that she enjoys working here because of her team. She says that the nurse team cares for and helps one another unselfishly. Sounds like a great reason to get up and go to work each day!
Soon Travis will visit this building daily for 7 weeks for radiotherapy treatment. I am pleased that he is allowed to get treatment in this building, for the lovely & calm setting; as well as for the kind professionals who are there to take care of him.
VCU Health
VCU Health is massive! The school and hospital take up several blocks of the downtown area in Richmond, VA. Plus, there are several other VCU Health buildings in the metro area. At one time this was called the Medical College of Virginia. Now it is part of Virginia Commonwealth University and has grown into something that is not functioning well. It seems that something will have to change soon, or it will all fall apart. Despite that, the hospital has hired some amazing physicians who are leaders in their fields.
Massey Comprehensive Cancer Center
For years I have participated in the Monument Avenue 10K in early Spring right here in Richmond, Virginia. That race holds a special spot in my heart as it was my first ever road race and the first great accomplishment within my goal to start jogging for my own health. The race raises money for the Massey Cancer Center, which I have been aware of and half-heartedly supported. I believe that the next time I complete the 10K I will whole-heartedly support Massey!
Cancer information is quite comprehensive on the Massey website. While exploring their site I found an interesting article about sarcomas. If you would like to read a rather lengthy summary about soft tissue sarcoma and ways it can be treated, I found this article. The beginning of the article provides key points and an explanation of soft tissue, which I found to be very helpful.
Visiting the new building downtown.
This week we had to go downtown to see the oncologist, Dr. Poklepovic. Driving downtown is not one of my favorite things and having Travis in the passenger seat makes me a bit more edgy (My issue, not his). Google maps got us to the outpatient building easily and we used the valet parking service, which is a thing as wonderful as sliced bread. As I recovered from driving downtown, I confronted the next challenge of getting Travis to the correct place in the Adult Outpatient Building. All the people who work in that building were so good about directing us to the correct place. They must know how challenging it is to navigate that hospital.
Our visit took about 90 minutes. That includes talking with an extremely extroverted nurse, a visit from the nurse navigator and finally seeing the oncologist. It was worth the wait! Like everyone else in the oncology field, the doctor gave us the information we needed and did not leave until he answered all of our questions. He is also a great cheerleader offering his support, encouraging us and being available for us anytime we have questions. Until our next appointment, we take life one day at a time and try to fill it with things and people who lift us up.
A shift in teaching.
I’m taking my time reading through my professional development book “The Power of Our Words”. Some of these ideas are quite the departure from what I have been doing for most of my career. I feel like I will need to read this book again before I start teaching in August. One of my favorite golden nuggets is the general guidelines for teacher language. They are as follows:
- Be direct and genuine.
- Convey faith in children’s abilities and intentions.
- Focus on action.
- Keep it brief.
- Know when to be silent.
As I reflect on what I have learned from this book, I see clearly that I lack in using my words to their greatest effect. Putting this into action will take practice and reflection throughout the school year. Two things are certain, it will be a challenge to make this shift and I believe it will create a positive outcome to the music room learning environment.
Still enjoying Summertime.
I have been making time to get to the park and exercise by walking/jogging several times a week. It isn’t as easy as it used to be, but I manage to move for three miles each time I go. This summer break is busier than usual with all the appointments for Travis and even for me. Someone once told me “Getting old ain’t for sissies”. Truth!
Still, I do my best to sit back and enjoy some relaxing time. We are working our way through Ted Lasso while enjoying our free trial of Apple TV. International soccer tournaments and baseball games also keep our spirits up. If you have any suggestions for other comedies or lighthearted media to help pass time, I am happy to take those! I do have a book to read for fun, but I am making myself finish my professional development book first.
I am impressed with how Travis has transformed into a fútbol fan. He even turned on a EUFA Euro cup match while I was in the kitchen preparing a dish for our church picnic on Sunday! He will also let me watch the COPA tournament in the evenings. The greatest thing that a televised soccer match has in its favor is no commercial breaks, according to my husband.
Finally!
I will leave you with this last image of something we have been in need of, desperately!
We are in a moderate drought in central Virginia, and we are finally receiving some much-anticipated rain today!!
This feels a bit metaphoric for our current health situation. We are ready for some relief from this poopy sarcoma, let it rain!
