Sometimes Surveillance is Satisfactory

When survivorship becomes long-term, it can be an adjustment to move from active treatment to periodic surveillance.

Yesterday, I was scheduled for my annual visit at the cancer treatment center. Since my last visit, the center had been bought by another company. I was nervous about the visit, not only because it had been a while since I’d been there, but also because I would be seeing a new oncologist.

Front of the building

Since being diagnosed with breast cancer, I’ve seen several oncologists. For one reason or another, I hadn’t been with one for more than 2 years. I always found it difficult to see a new doctor but learned to develop a “nutshell” version of my medical history to present at each visit.

When I arrived at the cancer center, I lucked up and found a parking space close to the front door. The parking lot was packed and I was grateful, especially since I’d been having a lot of knee problems and walking was difficult.

As I entered the building, I wasn’t prepared for the anxious feelings that suddenly overwhelmed me. Standing in the lobby, I looked around. Some things were familiar but many things had changed.

At the registration desk, I received a schedule of my appointments for the day. It was going to be a long day. I would start the day with a visit to the lab, then I’d see a nurse for assessment before seeing the oncologist. After the oncologist, I’d see a naturopath and finally, I’d end the day in the physical therapy department as I was re-evaluated for lymphedema treatment.

First waiting room area

The lab visit was quick and a skilled nurse found the vein in my hand quickly. It would be an hour before my next appointment, so I found an empty chair in a quiet hallway and sat down to read. As I waited, I watched patients come and go. I felt uncomfortable. I didn’t look like the other breast cancer patients. I looked healthy and strong while they were evidently in various stages of treatment. Pushing down my feelings of survivor’s guilt, I continued to vacillate between reading my book and looking at my watch.

When the time came for me to head toward the oncology department, my anxiety eased a bit as I saw a familiar face. One of the administrative staff greeted me with a big smile and said, “I remember you!” Instantly, her kindness put my heart at ease.

Soon I was called back to meet with the new nurse. After a brief visit with her, I was placed in an exam room to await my new oncologist.

When the oncologist entered, she briefly introduced herself and then turned to introduce me to her scribe and a nurse. I was surprised to have 3 people attending me.

The doctor pulled up my medical records on her computer screen and began to read about my case. As she recanted the information to me, I was surprised when she said, “So I see here you underwent reconstruction…” Immediately, I interrupted her and said, “No. I did not.” She looked shocked that she’d received incorrect information. Though I was hesitant to correct her, I wanted to make sure my record accurately reflected my cancer journey.

Waiting room for the naturopath

 

After getting familiar with my case, the doctor asked about my current symptoms and whether I was having any problems. I mentioned a growth I’d found at my left clavicle. She quickly palpated it and ordered an ultrasound. I was glad she was concerned and proactive.

Next, I was sent to the naturopath. He met with me for about twenty minutes and gave ideas on how to combat my chronic insomnia. I enjoyed talking with him and left with a sheet of paper listing several companies that provided CBD products he thought would be helpful.

One thing I like about the cancer treatment center was its integrative and holistic approach to treatment.

View of the parking lot from the rooftop

 

The next stop was the physical therapy department. A new therapist asked about my lymphedema and went over treatment options. As she talked, I smiled and told her I’d been dealing with this for 9 years and I was very familiar with manual lymphatic drainage, dry brushing, and using compression garments. She laughed and said, “So this is really old hat to you?” I nodded and she told me to keep on doing what I was doing and I wouldn’t need to see her again unless something changed. 

After all my appointments, I wanted a few minute to decompress so I went up the secret elevator (the one only patients know about) that takes you up to the fifth floor. Up there, patients can hang out in a very private, quiet terrace area. I like going up there because usually there's no one there. It's a good thinking spot, but when I got there, two women were sunbathing and I didn't want to disturb them so I picked a quiet corner and took a few minutes to pray before leaving. 

I left the facility feeling conflicted. While I understood the importance of an annual visit, I still hadn’t gotten used to being under surveillance care.

When I first began treatment, I was seeing someone every few months or so. As time went on, my appointments were moved out to about every six months, and now, every year.

It was comforting to know someone was keeping a close watch on me but I would also have to keep a close watch on myself. That’s one reason I’ve learned, over the years, to pay particular attention to my body. Aches and pains are normal parts of aging but there are things that I need to watch like lumps that randomly appear or an increase in lymphatic issues.

from the roof toward the front of the building

The good thing about being under surveillance is knowing I’m only a phone call away from medical care. Though I won’t see the oncologist every few months, I’ll always see my primary care physician multiple times a year. If there’s something I’m not sure about, I can always ask his opinion first and if he thinks it’s something cancer-related, he’ll refer me back to the oncologist.

5th floor roof terrace hangout for patients

 

 

 

 

Being under surveillance takes some getting used to. I like the freedom of knowing I don’t have to report in for treatment constantly but I’m not quite used to returning to my post-cancer life. I guess all good things come in time but I still don’t understand why the oncologist won’t say I’m completely cured. In my heart, I don’t believe cancer will ever be a part of my life again even if cancer care continues to be.

It’s such a blessing to know I can finally live my life without the constant fear of recurrence. It’s taken me 9 years to get to this point but boy, it sure feels good.

Ultrasound Results

We met with my new oncologist today. She's very nice and very professional. As she went over the results of the ultrasound, I was happy to hear there was nothing visible other than dense scar tissue. The pain I'd been experiencing was due to the regrowth of nerves in that area. Dr. Ninan explained it can take up to three years for nerves to regenerate and grow. Since I'm still having severe back pain, she wants me to have a bone scan next week. We'll discuss my treatment options depending on what that scan shows.

After we finished our time with the doctor, Phil and I wandered through the facility. I hadn't had a chance to learn my way around and the patient advocate assured me there were some areas I'd want to visit. We made our way up to the fifth floor to the rooftop terrace. There, patients had the freedom to lounge in outdoor breezes under the shade of the rooftop pergola. Comfy seating and complete quiet provided a getaway from the hustle and bustle of the downstairs areas. We also visited the chapel located on the second floor. This small worship area was beautifully designed and featured a lovely stained glass window. Worship services are held throughout the week and on Sundays. Phil was amazed at all the attention to detail in the center. He couldn't get over the fact that there was an onsite Hair Salon, Restaurant, Gift Shop, and Acupuncture center.

It was a good, productive morning. I was thankful he was able to go with me to my appointment. He's been having to work so many Saturdays lately, I was worried he couldn't go. It always makes me feel more at ease to have his moral support.

Here we go again

I was so keyed up about going to my appointment today that I needed something to help me sleep last night. I'm so thankful I had a prescription for Ambien and I was able to fall soundly asleep within about fifteen minutes after taking it. I don't really like taking medication to help me sleep but lately, it's been a necessity. Either I'm in too much pain to rest comfortably or I can't get my mind to stop thinking.

This morning, the nerves have kicked in again. I'm not looking forward to going to this appointment alone. I'd feel much better if I had someone to go with me but I guess it's time to pull out the big girl panties. I may look for my little friend, the tiny stuffed lion my friend Wendy gave me at the beginning of my treatments in 2014. I took that little guy with me to every test and every treatment. I know. It was a silly thing to do but it brought me great comfort and made me feel less alone.

No one likes feeling like a bug under a microscope and that's exactly how I'll feel today. After answering a zillion and one health questions, the poking and prodding will begin. Today's supposed to be an easy day. Tomorrow will be the testing day. I've already been told I'll have another bone scan and probably more ultrasounds. I feel like I'm starting from scratch....

Saturday, I'm to meet with the new oncologist. Yes, I said Saturday. I know. I thought it was weird too. How many professionals are willing to meet with patients on a Saturday? Not many. But I'm thankful it's a woman and I'm also thankful my first meeting with her will be on a Saturday so Phil can come with me. If this doctor is like my other doctors from India, I'm sure she'll be very pleasant and very helpful.

As I type this, I can't help but watch the clock. I need to leave for my appointment soon.

Everything happens for a reason

I've always been a firm believer that everything happens for a reason and everything that happens is ultimately part of God's perfect plan for my life. Of course, some things that happen happen because of choices we make and some things happen because of choices we did not make but each choice, whether wrong or right, takes us down a path that God has allowed. Sometimes He allows the path to be used as a teaching tool. Sometimes we learn the lesson and sometimes we do not but, if we remember, each thing that touches our life has to first come through the mighty hand of God, then each thing should be received as a gift. I choose to look at life this way although there are many who do not agree with my perspective. 

For some time now, I've been feeling like I needed to make a change in my medical care. Earlier this week, I took the first step in that process and started the ball rolling. I contacted Cancer Treatment Centers of America because I felt I deserved better care than I was getting from my current oncologist. I could have stayed with my current doctor. I've been his patient for the past three years but something in my gut was telling me it was time to make a change and I've learned to listen to my gut (actually, the prompting of the Holy Spirit is more accurate terminology) because when I listen, I always reap the benefits of making a wise decision. 

Today, I spent an hour on the phone with my nurse navigator. CTCA (Cancer Treatment Centers of America) assigns each patient their very own nurse to help them navigate through all the testing, paperwork, questions, etc. throughout the time they are under the care of any medical staff at their facility. My nurse navigator's name is Crystal. She was extremely nice and very professional. We went over my medical records which included medications, tests, reports, surgeries, and personal history. As I went over each item with her, it was as if I were back at the beginning of my breast cancer journey. I was surprised at all the emotions that came creeping up as we talked. There were several times in our conversation that I had to fight back tears and as I did so, I began to experience a little doubt. I wondered if I was doing the right thing leaving the oncologist, breast surgeon and radiation oncologist that had taken care of me for the past three years. They'd been good to me but if I had to rate them on a scale of 1-10, I'd give the oncologist a 2, my radiation oncologist a 4 and my breast surgeon a 9. 

I wondered as we wrapped up the conversation how my medical team would feel when the folks at CTCA contacted them for all my medical reports. Would they feel betrayed? Would they wonder why I was leaving? Would they even care? I'm sure patients leave practices all the time under normal circumstances but I was abnormal. Cancer makes you abnormal. And even as much as I'd like to be normal again, I'm glad I'm not. 

My nurse navigator said I'd more than likely have a bone scan as soon as I start treatment there next week. I've been having a lot of pain in my thoracic spine around the T7 and T8 vertebrae. She said they'd probably want to repeat a chest ultrasound too. When I mentioned my desire to continue my natural health care regimen, she told me she needed to speak transparently with me. I knew what she was going to say before she said it. She said since my cancer was fed by Estrogen and Progesterone, the doctors at the center would more than likely put me back on adjuvant therapy. That means oral chemotherapy and that also means it will probably be one of the three drugs I've already tried - Arimidex, Aromasin, and Tamoxifen. I mentioned the bad experience I'd had with each of them and she assured me the doctors would manage any side effects with other medications or they may even put me in a clinical trial. When asked if I would be okay with that, I answered in the affirmative. 

Truth be told, I'm nervous about what the future holds. The fear of recurrence is always in the back of my mind. I talked to the nurse about the insomnia and anxiety I've been experiencing and she made a note of it in my chart. Over the next couple of days, my new medical team will meet to discuss my case. On Tuesday, when I go in for my physical assessment, they'll have even more information to review. Wednesday, there will be more testing and I'll meet my new oncologist on Saturday. Yes, Saturday! At CTCA doctors work on the weekends and it's not an abnormal thing. 

CTCA believes in integrated treatment. They have a naturopath, a spiritual advisor, a nutritional counselor, a mental health advisor, and of course, the medical team which includes the oncologist, nurses, therapists, etc. 

I'm a wee bit anxious about what comes next but I'm doing my best to trust God and leave everything else up to Him. I can't control any of it anyway, so why worry about it, right? So, we'll see what happens and where all this goes. Right now the path is dark and unclear. I feel like it's a winding path through a dense, brush filled forest. I'm standing at the head of the path looking down through a tunnel of overgrowth. There are thorns and thistles on both sides of the path and the road is rocky underfoot. I've taken the first step by deciding to leave my present team, now I need to be ready to move forward when the time comes. Next week, it will be time to venture a little further on the path. If you care to follow me on my journey, check back often for updates. I'm sure there will be many. 

The willow which bends to the tempest,
often escapes better than the oak which resists it;
and so in great calamities,
it sometimes happens that light and frivolous spirits
recover their elasticity and presence of mind sooner
than those of a loftier character.
- Albert Schweitzer