My Soul and My Body

I was 56 years old and had been going to my primary care physician (PCP) for almost a year.  I told him I was the type of person who read everything, and the last CT scan read I should have a CT every 6-9 months. There were some nodules in my lower left lung, which needed to be monitored.  I told him I could blow that out of proportion.  I was afraid I would get lung cancer like my dad, who eventually died from it.  He told me not to worry.

Now, if you saw me, I looked healthy at the time and still do.  In fact, I have gained about twenty pounds.  I worked out every day, either on the elliptical at an incline of a level 10 for 45-60 minutes every day.  I also worked out with weights every Tuesday and Thursday along with the elliptical at the gym.  Afterwards, I would get ready and go to work.

My hip began hurting.  I kept going to the doctor.  I tried creams, gels, wraps, massages, the chiropractor, and nothing was helping.  The PCP had an x-ray done of my hip.  He said it looked fine.  He sent me to physical therapy, and it didn’t help either.

I was going to the PCP every month.  I would have labs done. My alkaline phosphatase number kept going up.  I told my concerns to the PCP, but it seemed he really didn’t take me seriously.  I was beginning to feel like a hypochondriac.  I was coughing and tired.  He would put me on steroids or antibiotics. I would feel better for a week or two and then I would start feeling bad again.  I thought this must be part of what getting old means.  I guess I will just hurt all the time.

The CT recommendation kept popping into my head.  When I went to see him in June 2017, he was going to send me to the physical therapist again.  I said no.  I had already been, nothing changed, and why would this be any different?  I told him I wanted a CT.  He said he didn’t think I needed one.  I told him the last CT recommended I have one every 6-9 months.  He reluctantly agreed.

I went to see the PCP.  He said I had a mass in my upper left lung, and he was concerned.  This was July 2017.  From that point my life changed.  I went and had a PET Scan.  It was confirmed.  I had Stage IV Lung Cancer in my chest wall.  It had metastasized to my right femur.  It was at the point of fracturing.  I had a lung biopsy so they could determine the best course of treatment I would undergo.  It came back non-differentiated, which means they didn’t know what kind of cancer it was, so it would be a trial and error treatment.

The first thing I had to undergo was the hip stabilization surgery.  It meant a titanium rod would be put in my leg, which screwed to my hip and knee.  I saw the surgeon on Friday, and he scheduled the operation on Monday.  It was an awful recovery.  The physical therapist came to my house for a couple of weeks.

During this time, I knew in my whole being I was to write a daily meditation book for anyone affected by cancer.  It was a long process, but I had plenty of time because I couldn’t exercise or work for a while.  I began picking out scriptures about fear and healing.  The book kind of took over.

I began my radiation treatments—five on my hip and thirty on my left lung.  I will tell you right now.  The first time I saw the radiation room.  I just broke down.  All I could think of was the door closing, and I would be trapped.  No one could be in the radiation room with me.  It was a big room.  The door was thicker or just as thick as a bank vault door.  They told me they could see me and hear me.  They would pipe music in while I was having my treatment.  I tried classical music, but it didn’t work.  I tried reggae, and it enabled me to relax and think of a beach.

I began getting chemotherapy at the same time.  Once a week for a four-hours.  First, they had to give me Benadryl because of a possible allergic reaction.  I did this every Thursday.  The radiation oncologist had to give me a longer treatment one day a week.  Between us, we determined Thursday was the best day, since I would be calmer because of the Benadryl.

I finished my treatments and radiation the end of September.  I would have a PET Scan in November 2017.  This was to give the radiation and chemo time to work, since it still worked afterwards.

Looking back, I was completely exhausted.  I didn’t lose all my hair, but it was very thin.  My sense of smell changed for about a year.  I couldn’t stand the smell popcorn, and the perfume I had been wearing for years I couldn’t put on.  It was hard and very difficult to breathe.

Still, during all of this time I kept writing.  It might have been one paragraph, but I kept at it.  I knew this was my calling or mission.

I had the scan, and we went to the oncologist’s office.  I had two groin lymph nodes that had popped up.  The oncologist said he was surprised.  He said we would monitor them, and, if they got bigger, we would deal with it then.  He wrote a prescription for 50 steroids because I had pneumonitis. The prescription lasted until Christmas.

I went back for a CT scan in January 2018 and April 2018.  The lung cancer was still shrinking, and the femur had little to no activity.  I was still writing.  In June 2018 my inguinal lymph nodes had doubled in size, and they were very active. He said they were malignant and had to come out.

I had the lymph node removal surgery in July 2018.  My stomach was so swollen I looked like I was pregnant.  I remember before the surgery, the surgeon, who was to perform the surgery told me.  “I am impressed.  A lot of people in your situation would just give up, start watching tv, and then die.”

I began the immunotherapy drug, Tecentriq, around the second week of August 2018.  I was having the treatments every four weeks along with the bone shot, Xgeva, every 8 weeks.  These treatments weren’t long compared to the chemo.  The first one was about an hour, then it worked down to about thirty minutes.  There was a risk of an allergic reaction.  I had a small one, so now a couple of Benadryl before my treatment.

Once my body recovered somewhat from the surgery, I had to have fourteen radiation treatments on my groin lymph nodes.  I began these the last week of August.  I was still working on my book.

I began developing headaches around this time.  I thought it was because of the Tecentriq and radiation.  They kept getting worse and not better.  The lower part of my neck hurt.  I stayed in bed (unlike me) for a couple of days.  My husband stayed home from work because I was throwing up by this time.

He called the radiation department, and they set me up for an MRI in about two hours.  They let my husband stay in there with me.  I would say one word of the Serenity Prayer and then spell it.  I then started on the Lord’s Prayer.  We went to the radiation oncologist to have it read.  It was determined.  I had two malignant brain tumors, and the radiation oncologist recommended the best brain surgeon in Nashville.

I tried to get another radiation treatment, but, by this time, I couldn’t even lay down on my back.  The technician said no more radiation treatments for her.  She’s done.  I’d had nine out of fourteen treatments.

I was sent to the oncologist where I was rehydrated and given steroids to take until I could have the two tumors removed.  I had to stop the Tecentriq until after the brain surgery and recovery.  One can’t take steroids and have immunotherapy at the same time.

The brain surgeon told me, if I had to have brain tumors, this was the best place to have them because it just really affected my balance.  The tumors were in my cerebellum.

They tumors were removed, and the surgeon came by to see me.  He couldn’t believe I was sitting up in bed on my computer.  I was sent home after three days.  I was given more steroids.  I was still working on my book.

After I recovered from the surgery, I had three radiation treatments on my brain.  This time it was “The Greatest Showman” soundtrack I listened too.  It was a long treatment with a mask on my face.

The incision where the brain tumors were removed became infected, and I was back in the hospital.  They had to do another surgery.  They cut the incision and drained it.  The infection didn’t reach my brain.

I have tried two MRI’s since the surgery and haven’t been able to go through it.  It’s just awful for me.  With a brain MRI a mask is put on your face and then it’s pinned down.  The MRI lasts for about 45 minutes.

I began the Tecentriq again at the end of November 2018. One of the side effects is it can mess with the thyroid, so now I have to be on thyroid medication. I was able to move my treatments to every three weeks.  We moved so I began going to a different oncologist but with the same practice.

My book was published in June 2019.  It was almost two years from when I was diagnosed.  I will be taking Tecentriq for the rest of my life, or until it quits working.  I will then have the option of trying a new drug or a trial drug.

My cancer is controlled right now.  There is no evidence I have any cancer in my groin lymph nodes or femur.  The last brain CT showed just scar tissue.

It’s like I told my husband, if my book, helps just one person this is all that matters to me.  I just want people to know there is a meditation book out there not just for the cancer patient, but also for the caregivers, the medical profession, friends, family, or anyone who has been affected by cancer.  I know I am a miracle.

I am not saying this has been an easy journey.  It’s been a different journey.  I know God wants me to share the good with the bad, thus the book, and, now, the website, https://www.eradicatecancerjoyfully; the Twitter account, https://twitter.com/ecjoyfully;

The Instagram account,  https://www.instagram.com/ecjoyfully; and the Facebook Page, https://www.facebook.com/eradicatecancerjoyfully/.  The mission is to show everyone affected by cancer they can have a joyful life.  It’s all in the way one looks at it.

All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://elephantsandtea.org/contact/submissions/.