Friday, March 10, 2023

One Step Forward & One Step Back

 I finally got the results from the stomach biopsies last week but was so busy I forgot to blog about it, so please forgive me.Thankfully, I was right. It ended up being no news was good news. 

When the doctor called to give me the report, I was so happy to hear him say they were benign tumors and we'd just keep an eye on them. Whew! I felt like I dodged a big bullet. That was my one step forward because knowing I wasn't going to immediately face another cancer diagnosis, I felt a huge weight lifted from my shoulders, or should I say belly? Lol!

But after that phone call, I got to thinking. Was I really getting the kind of surveillance care I needed? After a cancer diagnosis, patients need to be kept under a watchful eye. Routine tests need to be performed and everything that can be done to prevent a possible recurrence needs to be done. I'm coming up on my 9th year post cancer and while I'm extremely blessed to be able to say that, since changing back to my old oncology group, I was only being seen once a year. That didn't quite seem enough in my book. I felt like I should at least be seen every six months. 

A niggling little feeling kept at me and I decided to reach out to the cancer treatment center I'd gone to for 5 years before. Let me give a little back history, in case you're new to the blog and don't know the details. 

When I was first diagnosed with breast cancer, I'd just moved to a new city and didn't know any doctors so I had to look on the internet for oncologists in my area. After finding the closest ones to me, I became a patient in their practice and got good care until my doctor, Dr. F, decided to leave that group and go with another hospital in a neighboring city. At that time, I tried a couple of other doctors in the group but they were much older and ready for retirement. I wanted a doctor who was going to be around a while and was pleasantly surprised when a new cancer treatment center was built just about ten miles from my home. 

 I contacted the center and liked the fact that everything was in one building - doctors offices, imaging services, physical therapy, chemotherapy and radiation therapies, a nutritionist, chiropractor, acupuncturist, naturopath, dietician, library, and religious services. It was a one stop shop! With my old oncologist, if I'd need any scans or tests, I always had to go to another facility and sometimes it was very inconvenient.

The doctor I was seeing at the cancer treatment center, Dr. H, specialized in breast cancer and hematology but not long after I'd gotten established with him, he left and started a practice in another state. At that point, I was randomly assigned to another oncologist just before Covid hit. 

The first time I saw that doctor, Dr. M, I went to the facilty for an in person meeting but was surprised when I first had an "interview" via an iPad. It was weird to sit in an exam room with a chair in front of me staring at a screen as the doctor asked me questions. When he felt like I was "safe to approach in person," he came into the room but stay on the other side far away from me. Through a masked face, he asked a few questions and left shortly after. To say I felt slighted was a huge understatement. 

The day after that experience, I contacted the cancer treatment center and told them I didn't want to see Dr. M again. I requested a new doctor, one that would treat me as a valued patient. But somehow, I slipped through the cracks and kept getting the run around every time I called back to schedule an appointment. I had no idea what was going on and tried to get back in for several months before finally giving up and going back to the first practice I'd had care under. 

I was received there and assigned to Dr. P, a young, cordial doctor who felt like I could see him annually and do okay. 

In the meantime, the cancer treatment center was bought by an organization called City of Hope and a lot of positive changes were made.

One day, while checking my emails, I came across an email from a woman I remembered from the cancer treatment center. Her name was Kelly and she was a patient outreach coordinator. In her message, she asked how I was doing and if there was anything she could do to help me. I was surprised to get her message, especially since I'd tried for months to get an appointment there. Explaining the situation to her, I sent a reply. The following day, she messaged back and said she'd forwarded my message on to another staff member and she assured me I'd hear back soon. Within a couple of days, I got a phone call and the ball started rolling fast. 

To make a long story shorter, I was scheduled for a screening phone call and then a telehealth appointment with an intern there. After answering a gazillion questions, I was given an actual appointment with a new oncologist, Dr. S. Not only was I given a new appointment, I was also scheduled to have lab work done, to meet with the naturopath, and to meet with the occupational therapist all on the same day! Talk about a difference of service and attention! 

My new oncologist

Going back to the cancer treatment center, which was now called the City of Hope was a step back but not really. It felt kind of like I was doing a medical tango going from one doctor to another over the years, but there are no rules in cancer care. It's okay to do what's best for you. 

Sometimes it's necessary to make changes to your medical staff, especially if you feel you're not getting the care you need. I've found, over the years, I am my own best advocate. And I've learned to listen to that still little voice that speaks to my heart telling me when I need to do something different. 

9 years is a long time to survive cancer. This July 9th, I'll celebrate that milestone and I'm looking forward to celebrating year after year in the future. 

Although it seems I've been through the alphabet when it comes to doctors and I've had to adjust to new technologies in the way they're doing things now, I think I'm on the right track. I'm looking forward to meeting Dr. S this coming Wednesday. 

It will feel kind of odd to be back in the old cancer treatment center, but it will feel good, too. I know exactly where everything is there. I won't be scared, like I was when I first started going there. I'm thankful I felt led to keep pushing until I got what I wanted and needed. Getting the best health care possible is so important to someone who'd been through cancer. 

A fear of recurrence is always something we struggle with.  That reminds me, when I was having the telehealth appointment with the intern from City of Hope, he told me that he'd also been through cancer and was currently celebrating his 16th year of being cancer free. As we were talking, I asked him if the fear of recurrence ever goes away. He said, "It will with time." That gave me hope that I won't always struggled with these feelings. You'd think I'd be over those feelings by now, but I'm not. Every time I have any kind of physical malady, my first thought is, "Oh No! The cancer's back." I know it's not health to think like that, but it's exactly how I feel. Cancer does a number on your body, but also on your mind. Being a survivor means you have to find a way to push through those "what if" moments each day as they come and that takes a lot of will power.

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