When can I quit cancer?

When can I quit cancer? I ask myself that question several times a day. I'm tired of it. For over 9 years I've been dealing with cancer and cancer related items. To say I'm over it would be an understatement. 

Yesterday, I spent 4 hours at the cancer treatment center. I'd gone for a "check up." They had me come in for lab work and then I'd had to wait around for an hour so the results could be review by the doctor. Then, I had to wait even longer to see the doc. 

When she finally came into the room, I thought, she's going to spend extra time with me since she was over an hour late for my appointment. I don't know where I came up with that idea because it certainly wasn't reality. I don't even think she was in the room with me for 5 minutes! 

After looking at my labs and telling me my sodium was low, she quickly looked back at the ultrasound report from my last visit and asked about the enlarged lymph node in my neck they'd scanned. I told her it was still there. 

She came over and began to mash around on my neck then went back to her desk and said, "We'll get a CT on that area." When she said it, my mind naturally went to a bad place - did she think the cancer had returned? I didn't get a chance to ask her because she was already heading out the door. Apparently, she'd been overbooked that day and had many more patients to see. I left feeling frustrated and angry. 

I snuck this photo in the waiting room

I realize the importance of continual screening and annual oncology appointments are the best way of staying on top of any possible issues, but it sure is getting old.

When the doctor was looking over my labs, I did ask what my tumor marker numbers were. In the past, with my other oncologists, they've always told me my numbers. Dr. S, my new onco, looked at my funny and said, "Oh, we don't normally do those when you've had surgery to remove the cancer." WHAT??? I must have looked at her quizzically because she repeated the statement. That's when I told her, with my family history of all sorts of nasty cancers - lung cancer, esophageal cancer, brain cancer, etc. that I needed to know what my tumor markers were and I expected to have that test run regularly. Thankfully, she heard me because she turned to her scribe and said, "We'll make a note to run the tumor markers at your next visit." Dang. 

I toyed with the idea of going back to my other oncologist. At least he gave me the time of day and seemed to be truly interested in my health. This new onco seems overworked and uninterested. It's not a good way to do business, especially in the medical field. 

There are many things I liked about the cancer treatment center and many things I do not. I like that everything is contained in one location - all the imaging, chemotherapy, radiation, labs, etc. are in the same huge building. I don't like the fact that this hospital is a regional one and since it is one of 5 facilities nationwide, there are a LOT of patients. 

Cancer is a lucrative business, that's for sure, but when the patients suffer because of the business side of it, change needs to happen. 

Maybe patients need to start filling out those after visit questionnaires a little more truthfully. I sure do. If they ask how pleased I was with the service I received, I tell them like it is. When they ask how long I had to wait before seeing the doctor, I'm not sugar coating it and when they ask if I'd recommend others to the facility, I don't hem and haw. I state my reasons, both pro and con. I feel like they asked for it, so they're gonna get it. 

Rant over. In a nutshell, cancer sucks and I want out.

 

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.

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.