#19 CANCER JOURNEY CONTINUES…. UNEXPECTED ROCKY ROAD
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Welcome Back! At the end of 2020, I had been told that after surgery the road would get a lot easier. That is not at all what I experienced. Because I was expecting easy street, I think that impacted me even harder.
The radiation process and skin irritation side effects hit me a lot harder than I expected. Yet I had nothing to compare it to, therefore, I really did not know what to expect. I was back into the routine of medical appointments which was an adjustment from the previous couple months. Having to go for radiation every Monday through Friday really affected my schedule.
After radiation ended the schedule did ease up some. However, the treatment plan for Herceptin & Perjeta was for an entire year. I had three months of it in 2020. After chemotherapy and through surgery recovery I did not receive any. To complete the prescribed year, on January 28th I continued with Herceptin & Perjeta infusions every three weeks. It was good to see my chemo nurses again. Cindy who had been my main nurse last year, continued to treat me some of the time. They had also moved the chemo room from its temporary location due to Covid back to its original location. That felt so much better having a lot better facility.
Because my oncologist had left, I was given a new oncologist. He was recommended because he agrees with using some alternative treatments. Because I do not like medicine, that sounded good to me. About the same time, my nurse navigator left. She was a jewel. Already the previous year, my insurance nurse navigator left. So here I was three people who were my medical support team in my journey left. I found it emotionally exceedingly difficult with the transition to the new people. My previous supporters really took time to answer questions and encourage me. I found myself feeling so alone from the medical world. I didn’t feel the comfort I had received the previous year and this was very difficult for me.
I met my new oncologist for the first time in January. He seemed very pleasant. However, I had a lot of questions. I thought the appointment was like a new patient appointment since we had not met before. Therefore, I assumed the appointment time would be longer. It was not. In fact, when his allotted time was up, he said he had to go. I was not done with my questions. He still insisted he had to move on. That REALLY frustrated me.
Then on March 11, 2021, I left my oncology appointment in tears. This was the second time I had seen my new oncologist. I thought it would be an easy appointment because he just had to approve my bloods were good and then I would go have my infusion. I had no preparation for the bomb shell that was thrown at me.
I knew eventually I was supposed to be on hormone suppressants for five years. I was not thrilled with that idea but did not think they would begin till maybe October. I thought I still had time to research to see if there were any other alternatives. Instead my current oncologist informed me that it was time to start them. He could tell I was very shocked. He said he typically starts them two weeks after radiation ends. No-one else had ever told me that timeline. Then he told me he uses the medication for TEN YEARS not five years because the cancer had been in a lymph node. That REALLY upset me!
He then informed me that there were seven major side effects of the medicine he wanted to put me on. One major side effect was bone density loss. Because of that he wanted me to go on Prolia. This REALLY upset me. I already have osteoporosis. My regular doctor knows that. He says the side effects of the osteoporosis medicines are worse than osteoporosis. He previously told me not to use them and to just do increased amounts of calcium and vitamin D.
In addition to all that bad news, he asked if IU was following up on my Thymoma Cancer. I said no. I do not like driving to Indianapolis. I am not sure where my brain was, but I guess for some reason I thought once I had surgery that issue was over with. Reality hit that I was going to have to have further testing to make sure it did not return. He scheduled me for a PET scan to make sure there was no other cancer activity in my body. This upset me because the harsh reality of continued testing hit me.
I tried to hide the tears that were trying to well up in me until he left the room. After he left, I sat in the room and cried and cried. After a while, the nurse came and directed me to have my Herceptin & Perjeta Infusion. While I talked to the chemo nurse, I just let the tears flow. This was one of those appointments I needed my husband there. If I knew an appointment could be stressful, in the past my husband joined me. Because I had no idea this appointment was going to throw me the bomb shell, I did not know I would need him there. My husband just so happened to be going to the hospital that day for blood work for a physical he was to have. I called him just as he had gotten to the hospital. I told him I needed him. So, when he was done, he came and sat with me during part of the infusion. I shared with him all my upsetting news.
I was impressed with him. I have never seen him react this way. He said let’s compartmentalize. Another words, what was the most important thing affecting the situation and the next important so we would not feel overloaded. He said just listening to me made him feel overwhelmed. That night and even the next morning I still had times I cried. I told him I wanted to be strong. He said he felt I have been strong through all of this. That encouraged me a little.
I also called my regular doctor’s office to ask him his opinion about me taking the Prolia. I had to wait a couple weeks for his answer. That was unusual but he did research before answering me. He said the side effects of Prolia scared him. After discussing the situation, he agreed for me to increase my calcium and Vitamin D intake. Then after 6 months have another Dexa scan to see how my bone density was doing.
The oncologist wanted me to take Anastrozole for the hormone suppressant. I talked with several other people who were on hormone suppressants, and they were taking Tamoxifen. I called my nurse navigator to ask for more clarification about Anastrozole and Tamoxifen. She mailed me fact sheets about them. She said if I had any questions after getting the information, I could call and talk to Tammy my previous nurse navigator who was filling in for her the following week. That was a blessing. Tammy is wonderful! Tammy spent a half hour over the phone looking up and explaining information. She explained that studies have been done showing that Anastrozole is so much more effective than Tamoxifen even if only taken for a few years. She sounded like the major side effects were worse with Tamoxifen. After talking with her that helped ease some of my concerns. I still felt anxious though about taking medicine for ten years. I was just beginning to feel closer to normal. I did not want that medicine to change my moods, cause me fatigue or make my osteoporosis worse. Again, I felt like a stressed out robot going through the motions. I really did not feel I had a choice. If I took the hormone suppressants, I had been told it would greatly increase my chances of the cancer not returning.
I also want to mention, this all happened the week I planned to launch Faith Walk with Debbie. I know the enemy was working overtime to discourage me. So, the next day I prayed the armor of God over me. Focused my mind on God’s purpose.
What I experienced in the beginning of 2021 was not what I expected. I had been told it would be an easier road. It was a lot more emotional than I expected. The reality that I would be dealing with the threat of cancer for the rest of my life shook me to the core. There was nothing I could do but cast my care on the Lord and trust that He would walk with me through all of this.
1 Peter 5:7 (NLT) talks specifically about that. “Give all your worries and cares to God, for he cares about you.” I know I have shared this scripture before. That is OK cause we need to gravitate to the power of God that really speaks to us. His word says that when we are afraid, we are to give it to Him. The reason for that is because He cares for us. Therefore, if he cares for me, I must trust that He will help me through the anxiety.
Please join me next time where I will share some unexpected, good news along with more fear that tried to devour me.
