One more ultrasound

At my latest oncology appointment, my new oncologist, Dr. Sharma, seemed concerned about the walnut sized lump at my left clavicle. It had been there for months but had seemed to be larger than it was when I first mentioned it to previous oncologist. I was grateful this new doctor was being proactive in ordering a test so quickly. 

When I arrived at the cancer treatment center's imaging department, the room was packed. The only available chair was close to a wall mounted television set and very close to an automatic door. I knew the constant noise from the TV would interrupt my reading but wasn't prepared for the blast of cold air every time the door opened as someone entered. I waited about fifteen minutes and as soon as someone was called back, I got up to move and take their seat. I lucked up and got a seat in a warmer section of the room very close to the receptionist's desk. 

My appointment was scheduled for 9:45 a.m. When 10:30 rolled around and I still hadn't been called back, I wondered if I'd been forgotten. There were so many in the waiting room though and it seemed they were moving slowly so I patiently waited. 

To my left was an older black couple. One seat over from me sat the woman softly humming. As I read, I heard her soothing melody. It wasn't bothersome at all and I was thankful for her low, soft voice. It seemed to calm me as I waited for my test 

A nurse came and sat by the couple. She spoke to the husband about the wife's upcoming procedure. I did my best not to eavesdrop but the nurse wasn't whispering. I kept my eyes glued to my book and tried to read as they talked. I kept going over the same line again and again. The nurse was telling the man that after his wife's lung biopsy they'd have to keep her under surveillance for a couple of hours. He asked questions as to why and the nurse said sometimes, during a lung biopsy, air can get into a patient's lungs and this can be a dangerous situation. The man's voice wavered as he continued to talk with the nurse. A few minutes later,  the nurse was taking the woman with her to the procedure area. 

I sat for a few minutes and didn't say a word. As I did, I felt the Holy Spirit prompting me to tell the man I was going to pray for his wife. I waited a few more minutes for confirmation and the nudge didn't go away, so I leaned over and told the man I wasn't trying to get into their business but I couldn't help overhearing about his wife's biopsy. He looked at me intently and I said, "May I ask your wife's name? I'd like to pray for her." Immediately he said, "Her name is Lynn Morgan." I smiled and told him I would be praying for her and I spoke words of encouragement to him. He thanked me over and over again before leaving to go find a hotel room for the night as the nurse had suggested he do just in case the wife's biopsy was more complicated than they expected. 

After Mr. Morgan left, I began to pray for his wife asking God to be with her and give her strength, to guide the doctor's hands and to protect her from complications. As I prayed, a verses from Isaiah came to mind, "You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord God is an everlasting rock." (Isaiah 26:3-4) I know God brought those verses to mind for not only Mrs. Morgan, but also for me. 

It wasn't long before I was being called back. I lay on the exam table as the radiology tech warmed up the gel. After asking me to show her the exact location of the lump, she took the transducer and began going over and over my left clavicle. As she pressed the wand down on the lump, it hurt. I kept my eyes on the ceiling tiles instead of looking at the ultrasound machine as I did in 2014 when I was first diagnosed. The ceiling tiles in the room were illuminated with a beautiful spring scene. I remembered that view and smiled to myself. 

The ceiling scene I enjoyed

I found it interesting that I wasn't terrified like I was the first time I'd had a breast ultrasound done. Over the years, I've become desensitized to all the poking, prodding, and tests. Perhaps it's because I feel in my heart cancer is no longer a threat to me. Oh, I know it can be. I'm not being naive about the dangers and possibility of a recurrence, it just feels like my stint with cancer is over and has been for some time. 

It kind of feels moot to have to keep going to the oncologist for annual checkups but I'm glad I have a safety net in place just in case. 

On the way home, I continued to pray for Mrs. Morgan. I wish I knew if she was doing okay. 

Next month, I'll return to the oncologist for more blood work, to see the integrative wellness team. Thankfully all that will be after vacation and I can enjoy the sand and sea without thinking about anything cancer related.

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.

I'm feeling enlightened

I was reading an article on the internet yesterday about a book written by author Scott Haas, entitled Why Be Happy. The article and premise of his book discussed the Japanese practice called ukeireru, which in essence means acceptance. It's the art of pausing and accepting the situations life throws at us before deciding upon a course of action. 

The more I read, the more I realized I've been in the process of experiencing this type of skill for the past year or so and didn't even know there was a label for it. 

At the end of last year, I decided, after a series of illnesses, that I needed to finally slow down and enjoy life. For the past 64 years I'd lived my life at breakneck speed trying to cram as much as possible into every single day, but that process was tiring and I wasn't fully enjoying life. 

One day, while I was having a cup of an exotic tea I ordered from an English tea house, I sat at my kitchen table doing nothing other than savoring that cuppa. I focused on the feel of the bone china in my hand. It's smooth, cool sides felt sturdy yet fragile at the same time. The warm, heady aroma of the tea wafted up toward my nostrils. As I breathed in deeply, I closed my eyes imagining every floral note in technicolor. When I brought the cup to my lips, I slowly parted them, anticipating the rich flavors. As the heat from the liquid touched my tongue, my senses came alive and I realized I was finally learning to savor and enjoy the simple pleasure of a cup of tea. How had I missed it all these years?And what else had I been missing. 

My world had drastically changed since being diagnosed with cancer. It was as if I'd been given a new lease on life. I was thankful to have a second chance to do things right, but often, as I went about my daily life, I tackled routine chores mindlessly. When we took small trips, I did my best to enjoy them and see things in a different light, but it wasn't always easy. 

I'm a typical type A personality, always have been and probably always will be. I'm a high achiever, a go getter, a hurry up and wait kind of person who lacks the patience of Job. I knew it was going to take time and energy to master the art of being in the moment or learning to be grounded as some liked to call it. Apparently, for the Japanese, this wasn't a learned technique, it was a given, a daily way of life. Why was it so easy for them to "get" and so hard for me? 

The art of  ukeireru bases acceptance as a way of life that offers potential for change. Apparently, that means the Japanese people just kind of "go with the flow." They don't stress about things, instead, they fully experience them. 

Wow. 

As I've gotten older, I realize I'm on the downhill side of things. With the time I have left, I want to slow down and embrace the concept of fully being where I am, doing exactly what I'm doing at the time, without feeling anxious or stressed about anything. 

I guess the best way to do that is to become more intentional about paying attention to the little things in life. 

It may sound silly to "fully experience" a cup of tea when I could just as easily gulp it down in a few minutes and move on to the next thing, but for the past few weeks, I've found I really enjoy this little ritual I've set up for myself. So much so that I've started buying fancy tea cups and unique types of tea. I've given myself permission to have a cuppa whenever I choose and when I do, I sit with it and slowly experience it fully. 

They say you can't teach an old dog new tricks, but I believe they're wrong. If this old lady can learn the art of ekeireru, then I'd say 64 years of missing out was well worth it. At least I have a few more years, knock on wood, to see what else I can fully give my acceptance to. 

Today, I'm planning on finding more ways to engage with my life. It's become a unique perspective and I'm feeling like I'm slowly waking from deep sleep. It almost reminds me of some days back in the 70s when an altered state of consciousness was achieved from a few drags on a hand rolled cigarette, if you know what I mean. Anyway, I digress. 

Ekeireru is still new to me and it's probably something that's new to you, too. Learning to fully embrace experiences, relationships, and daily life shouldn't be something we have to be taught to do. It should come naturally. I wonder why Americans have such a hard time with this?

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.