LACK OF COMMUNICATION WITH NEW ONCOLOGIST

So, it’s been a minute—actually, more like three months. I really hate that my first post after all this time is just me venting, but I’ve got to keep it real.

I have discussed in previous posts how the anxiety of a metastatic breast cancer diagnosis, or any cancer diagnosis, is always present. While it may not always be overwhelming, it never completely fades.

Certain triggers can significantly elevate those anxiety levels, such as waiting for test results or noticing a new ache or pain.

Over the past couple of months, I have experienced several triggers related to my health situation, but one thing weighs much more heavily on me than the others...... 

LACK OF COMMUNICATION=Stress 

Currently, the biggest source of my stress is the lack of communication with my new oncologist and her staff. When I say "lack," I mean it is virtually non-existent.

When I began my breast cancer journey with Dr. Saker and his nurse practitioner, Wan, following my initial diagnosis in early October 2016, I was overcome with fear. I understood the importance of having a medical team I could trust, and I quickly realized how essential it was to maintain open communication with them.

I quickly learned to trust that Dr. Saker and Wan were doing everything possible to provide the best care for both my physical health and mental well-being. I knew I could always rely on them to address any questions or concerns I had.

But now, Dr. Saker and Wan have both retired, and my journey continues with a new doctor at a new location. 

Although my new oncologist seems like a lovely woman, the level of care provided by her and the staff at the new location is not sufficient. 

It's nearly impossible to address my questions or concerns outside of my regular monthly visits. I have called the office several times with different concerns and/or questions and left messages, but I've either received no response or gotten a call from a nurse who can't seem to get answers from the doctor.

Unfortunately, I have to come to terms with the fact that I need to either accept the lack of communication and care from this new doctor, advocate for better care at this facility, or find another doctor altogether.

None of these options is ideal, and I feel very vulnerable right now. I'm also feeling a bit angry. Most importantly, I miss Dr. Saker and Wan.

Perhaps I am wrong to expect the same level of care from this new doctor, but I feel I deserve more from an oncologist and her staff. 

So now, I have a decision to make......

EASTER WEEK FAMILY TIME

We felt truly blessed to spend time with family during Easter Week! Alex drove down from Knoxville on Good Friday, and we enjoyed chatting, laughing, and going out to dinner together. Then, on Saturday, we drove to Gainesville, GA, where we checked into the perfect Airbnb!

Strawberry Margarita

Alex at Jersey Peach

 

On Saturday afternoon, Nick and Alison arrived after a long drive from their home in Massachusetts. They stopped to visit Alison's brother and his family in North Carolina before continuing their journey to Georgia. We were so happy to see them both, since we had not seen them since their wedding last April!

April 13, 2024-Such a beautiful day! 

We were thrilled to have our sons, Conor and Robert, along with our wonderful daughter-in-law, Jennifer, Robert's wife, join us on Sunday for a fantastic family day together!

Jen, Pam, Alison

Jen, Robert, Nick, Alison

Conor

Conor, Alison

Jen, Robert

Alex, Alison

Alex

We spent so much quality time together, eating and drinking a lot! 

We played RummiCube, Scattergories, Phase 10, and other fun games!

Later in the week, we walked on the trails right across the street from the Airbnb.

View of the covered bridge from our house.

Nick and Alison

One evening, Ray, Alex, Conor, and I walked to the nearby lake.

Our time together flew by far too quickly, but it was truly wonderful, filled with laughter, a bit of craziness, and a whole lot of love!

MILESTONES IN THE JOURNEY

On April 7th, I celebrated a special milestone: eight years since my mastectomy. This day was filled with mixed emotions as I reflected on the anxieties of the uncertainties I faced in the past and those I still encounter today. However, my gratitude for this incredible journey far outweighs those feelings.

My breast cancer journey began a few months before my mastectomy. I was diagnosed in early October and underwent several months of chemotherapy before the surgery. By April 2017, I was ready to take that next step, though it was a terrifying prospect.

I made it through the surgery with flying colors!

Each year has brought its own challenges and victories, and I have learned to truly embrace the strength I have gained along the way. I recognize that I would not have come this far without the unwavering love and support of my family and friends; they have been my rock throughout this journey. 

As I reflect on this experience, I am struck by the range of emotions I can feel at once. It serves as a reminder of how far I have come and the importance of every step I have taken.

MARCH-LYMPHEDEMA AWARENESS MONTH

I can't believe I waited until the last day of March to mention that March is Lymphedema Awareness Month!

After my mastectomy, my surgeon informed me that I had a high risk of developing lymphedema due to the surgery, radiation, and lymph node removal. He referred to me as a "triple threat." He encouraged me to see a lymphedema therapist for baseline measurements so we could assess how much larger my arm had become if I started to experience symptoms. He also provided other important information on the subject. I have since learned that some oncologists and even breast surgeons do not discuss lymphedema with their patients, which is shocking to me. What the heck??

Living with lymphedema has been challenging—physically, mentally, and financially. Unfortunately, I experience pain or discomfort from my lymphedema on a daily basis. Finding attractive and comfortable clothing that can effectively camouflage my much larger arm is often stressful and difficult. Additionally, the costs of compression garments and physical therapy sessions can add up quickly. Fortunately, advocates like actress Kathy Bates and many other supporters have worked hard to ensure that Medicare and insurance companies now cover most of our needs!

Today, I visited Cavell's, a specialty boutique that sells mastectomy and lymphedema supplies, to get fitted for new bras and lymphedema garments. It’s hard to believe, but some insurance companies still consider compression sleeves "cosmetic." Seriously??

I want to emphasize the importance of taking proactive measures regarding lymphedema if you are facing a breast cancer diagnosis. It’s essential to ask questions, research, and seek a qualified lymphedema therapist. Hopefully, there are more available than there are in my locality.

HAPPY TO ANSWER QUESTIONS

I am happy to answer any questions I can on the subject. I will soon post updated photos of my lymphedema arm and some pictures of the items I purchased today.