2023: Major Life Changes

The beginning of the year has arrived and another treatment change. No more drugs, straight IV chemo will be the new treatment. I will receive an appointment to install a port so IV treatment will be less painful than the stick of a needle. Up until this time I have kept my full head of hair. With the new treatment I will have hair loss but in the scheme of things does that really matter? Once I started treatment, I also started to lose my hair. I not only lost my hair, but I also lost my eyelashes and eyebrows. My Husband often joked and said I favored Uncle Fester (Addams Family).

These days I'm working from my office in Raleigh, minimally, and working from home the remainder of the time. I started the new treatment plan, along with hip injections on a regular basis. Over the next few months, I would get lab results that affected my blood count, magnesium, etc. This would be the first time I needed a blood transfusion and a regular dosing of fluids, potassium and magnesium. It was only a short period of time that I had to get another blood transfusion. I became very ill in the spring of 2023; fever and diarrhea were the worst symptoms of this new illness. My Oncologist checked my labs and other things and it was determined I was dealing with EColi. I was admitted to the hospital and immediately put on a buffet of IV bags: antiobiotics, potassium, magnesium, blood transfusion, etc. At one time five bags were being run into my body. EColi can be found in fruit and vegetables and it is no joke. The cause for mine may have been a trip to a salad bar. My immune system was compromised so my chances are greater for contracting a variety of things. I remained in the hospital for four days until I was feeling better and my lab numbers improved.

Going forward, fluids became the norm for me and there were weeks that I had to have these once a week. During this time, I had another PET Scan, the new treatment plan was working great: no new areas, no progression. The plan was working well but I wasn't well.

My energy level began to decline, and I found that I also had balance issues. I was in Clayton with my husband one Friday to visit a retail store. We had to park across the street from the store and the downtown was extremely busy. There was a break in traffic, and he crossed the street in front of me and waited in front of the store. I started to cross the street and my balance became off, I held on to the back of the car parked in front of car until I could steady myself. William ran back across the street to get me. He later told me he could see me falling into oncoming traffic. This would be the first of many balance episodes. I also noticed my reflexes became slow and my confidence in driving and going places declined. Working from home became my new norm. I tried to work one day a week and then a half day in the office, but I was so exhausted I barely made it home. I found it difficult to concentrate on simple things like check email, read or perform routine things and communicate. I began to fear that I would not be able to work much longer and the thought of leaving my job scared me to death. I enjoyed my job - what would I do if I was unable to work?

While at home one day I noticed something was going on with my gum. The gum had separated (in a small area) and a small section of bone exposed. I called my dentist for an appointment to see what was wrong. Several years of Xgeva had taken a toll on my teeth/gums so a pause was put on this portion of my treatment. As time went on, I noticed a hard item when I was chewing my food, the piece of bone came out by itself and within a few weeks the gum healed over the opening. Xgeva resumed and all seemed to be fine.

The turning point for me was a trip to Parker's BBQ in Wilson for my Husband's birthday. We arrived at the restaurant and as I was walking across the parking lot the balance problem showed its ugly face, and I blacked out for a few seconds. I fell on the pavement and didn't remember doing so. I sat there for a few minutes to regain my composure. My knees were all scraped up and my hands. This confirmed to me something was terribly wrong, and I had to get answers.

My next scheduled appointment was in a few days, so my Husband went with me as I addressed these concerns with the PA Sara. It was time for another PET Scan and this time she decided to add an MRI of the Brain. The tests were done, and I had a follow up the next day to get results. As William and I met with Dr. R she started the conversation with "We have a lot to discuss". I knew this was serious. The MRI of the Brain revealed the cancer had gone to the brain. There were 6-8 small areas in various sectors and one was in the area that controlled balance. The PET Scan again showed no new areas or progression and although this was good news for the neck down, I could not tolerate the treatment any longer. I shared this with Dr. R and she said we would try another treatment plan. We also discussed Advanced Directives and it was time for me to go out on permanent medical leave. This was so much to absorb in one day.

The immediate plan was to talk to a Radiology Oncologist to discuss the brain issues. An appointment was scheduled for the following day at the Cancer Center. The Oncologist was so nice and informative. The treatment plan she recommended was Brain Radiation. I had experienced radiation before on my femur with little side effects. The current chemo I was on did not treat any areas above the blood line - the area from the neck up.

I was fortunate to have radiation at The Medical Mall in Smithfield, only ten minutes from my home instead of the hour drive to Raleigh. The first appointment was to make a mold of the mask I would wear while having Radiation. If you have seen "The Silence of the Lambs", then you know the mask Anthony Hopkins wore for the character Hannibal Lecter. The mask was form fitting and for each treatment they placed the mask on my face and fastened it to the table. To be honest, this was quite scary. I could feel the mask touching my face, nose and chin. Luckily, I do not have a problem with small, closed places. There were days that this process was unnerving.

The side effects of Brain radiation were severe for several months. I was already drained from the chemo and radiation intensifies this significantly. I also experienced hearing loss for several months. My facial skin was always combination, but it quickly turned to dry, flaky skin and ears that would peel the skin. I increased my skin care to offset the skin problems, and it would be months before my skin would return to normal.

I began the process of short-term disability and then long-term disability. This was not the way I wanted to leave my job. I always dreamed of retiring at my designated age, traveling with my husband and enjoying more life experiences. I became very depressed and had to focus on my faith to get me through. Never have I experienced such dark days as I did during this time period. If I could take a shower, brush my teeth and get dressed - that was a successful day. My husband took over the washing, cooking and grocery shopping. He stepped in, as he always does, and took over no questions asked. I could no longer do the normal things in life. The last straw was the radiation and its side effects. My body and mind were spent.

A friend of mine works from home on a permanent basis. I think we both needed some company, and she started working from my home several days a week. We had good conversation and on the days, I didn't feel like talking it was fine too. There were several months that I only left home for Dr. appointments or church. I missed many church services due to my health. On the weekend we rarely left home and eating out was not an option for me. Anything other than preparing meals at home was takeout.

The Christmas season arrived Kaylon and Cait and my friend Kim did the majority of decorating. As much as I love Christmas, I didn't have the energy to decorate the tree or do much decorating at all. Christmas Eve and Christmas Day arrived. We had planned to eat with friends/family, but I was plagued by nausea/vomiting both days and was unable to leave the house.

As the end of the year winds down, I'm thankful for this year. I also pray for better days as we enter 2024.