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.

 

SCARY WORDS

While talking on the phone with a friend yesterday, the topic somehow shifted to words and phrases. She ended up saying, "There are definitely some words or phrases you just never want to hear or say."

CANCER

After my breast cancer diagnosis in October 2016, I found it nearly impossible to say the word "cancer" without feeling a surge of anxiety. I needed to inform my family and friends, but even thinking about that word made me feel so anxious that I nearly felt like throwing up. Over time, I became more comfortable with it, but another word emerged that became even harder for me to say.

METASTATIC

In 2020, a biopsy revealed cancer in a lymph node, and while my doctor avoided using the term "metastatic," I sensed that was the case. When I finally asked, he confirmed, “Yes, it's considered metastatic. It’s not currently curable but is treatable.”

UNDERSTANDING METASTATIC BREAST CANCER

Metastatic breast cancer, or stage IV, is when cancer spreads from the breast to other parts of the body. My doctor said that having metastatic disease doesn’t mean all hope is lost. Many treatment options exist, and new medications are always being tested, allowing many people to lead long, fulfilling lives.

My doctor explained that even though I'm in remission, a small dormant cell remains in my body. To prevent its spread, I take Verzenio daily and receive monthly Faslodex injections. We monitor my blood for white blood cell counts, which can drop due to the medications, but my numbers are currently stable.

Managing Negative Thoughts

I generally feel pretty good and no longer feel nauseous when I hear "metastatic." I know that it’s totally normal for negative thoughts to arise occasionally. Accepting this helps me navigate the tough days I face while dealing with cancer.

Coping Strategies

Managing difficult days effectively requires varied strategies. What works one day might not be effective another. 

When negative thoughts overwhelm me, I try to balance my spiritual, social, and physical health.

Here are some techniques I have found beneficial at times.

- Talking to a friend or family member.

- Getting outside for fresh air and a walk.

- Enjoying a good book or movie.

- Finding humor in challenging situations.

- Joining a support group, online or in person.

- Eating a big chunk of fudge. (No judgment, please!)

- Praying.

While I have had some success with the techniques above, nothing soothes my soul and relieves my stress quite like prayer.

Reaching out to my faith and support groups helps me handle things better on this journey.

GOODBYES

Last month, I visited the Cancer Center for my regular monthly appointment and saw my oncologist of eight years for the last time. Dr. Saker has been my doctor since my initial cancer diagnosis in October 2016, but he is retiring at the end of this month. Saying goodbye was really tough.

 

When I first met Dr. Saker, I was a complete wreck. I had so many questions swirling in my head, and some I was too scared to ask because I wasn’t sure I wanted to hear the answers. Thoughts about cancer, chemotherapy, surgery, and even death weighed heavily on me.

After having in-depth conversations with both Dr. Saker and Dr. Quill, the now-retired surgeon who performed my mastectomy, I began to feel much more reassured and hopeful about my future. Both doctors were everything I could have hoped for in my cancer treatment.

MORE GOODBYES

Yesterday was my final visit to the Lawrenceville office, where I have received my treatments since the beginning of this journey.

It was an emotional moment for me as I had to say goodbye to two amazing individuals who have played a significant role in my experience: Wan Yang, PA-C, and Lisa. Over the years, Wan has provided me with invaluable medical expertise, genuine concern, and kindness. It will take at least three or four people to fill his shoes at SHO!

When you walk into the Infusion Suite, the first person you see is Lisa. She is always there with a smile and a warm hug! I’m not even sure what her official job title is, but I genuinely believe that her smile and kind heart have the power to cure many ailments. Lisa is also a breast cancer survivor herself. Since I'll be getting treatments at a new location, I won't see Lisa regularly, which makes me sad.

However, I will definitely visit her whenever I’m in the area!

Lisa and Pam

I’ll miss many people at Suburban Hematology Oncology in Lawrenceville, GA, but saying goodbye to Dr. Saker, Wan, and Lisa really hits differently.

After a very emotional morning filled with tears, I decided that a bit of whipped cream on my coffee in the Survivor mug was just what the doctor ordered!

FAMILY!

Family is EVERYTHING!

October 19th was a busy, fun day for us! I already shared about Paint Gwinnett Pink 5k, which was a great way to start the day.

After the 5k, we headed home to change and wait for our girl, Alex, to arrive from Knoxville. We didn't have to wait long because she pulled up about 30 minutes after we got here! 

Ray and I were so happy to see Alex, and this little guy was excited, too! This was Alex's first visit since moving from Sioux Falls, SD, to Knoxville, TN, a few months ago.

We spent some time just hanging out at the house and talking before heading to our favorite local restaurant, Philanthropy, for a late lunch. 

After lunch, we returned home, and after chatting a bit more, Alex and I watched a couple of scary movies. Scary shows and movies have always been something we have done together, and I had really missed it!

Later in the evening, there was another favorite....Mexican food and margaritas!

                                                                                                                                                                                                                                                                                                     

After dinner, we were all tired, so the 3 of us just watched a couple of movies before going to bed.

On Sunday, we headed to Cumming, GA to meet up with Conor for lunch. He had to be at work at 5pm, so we went a bit early so we would have time to hang out for awhile.

Our visit was too short, but it was great being with these two! We are making plans to get together again for a few days during Thanksgiving!