Part 8 in a series about Colon Cancer
When I first started writing about my Colon Cancer four months ago, I only had a desire to get down on paper my experiences. But I also hoped that if the story was shared with others they would take heed and get their own colonoscopy done as soon as their doctor tells them to do it.
Intuitively I always believed there would be a final chapter of my Colon Cancer and that would be a happy ending. Occasionally my mind would ask the “what if” questions but my solid inner voice that remains positive and visualizes my future, would tell myself again and again, it would be a happy ending.
I went to my appointment with the new highly recommended Oncologist with a lot of attitude that we were doing it my way now. I would tell her what I was going to do. Hmmmph.
But when she came into the room, it was like a huge positive force of energy leading with sparkling blue eyes. Everything changed within me. I believed she would only take care of and nurture me and I could believe her. I was totally ready to listen and take her advice purely from the energy she emanated. She was such a healing persona that I dropped my “do it my way” ideas.
I had arrived with a long list of questions. Starting with knowing just what kind of cancer I had. Despite thinking you are prepared for each Doctors visit, I still did not fully understand the “type” of cancer I had.
Quickly she drew out a large piece of paper and began drawing me pictures of my cancer and explaining the type. I felt safe and protected by this Oncologist.
I learned that I had Stage IIIB Colon Cancer or T3N1bM0. T3 meant how far through the wall of the colon my cancer had gone. I had never known mine had gone through to the other side of my colon wall. That is T3. N1b was for how many lymph nodes had a cancer and I was in the first level of cancerous lymph nodes with only 3 of 12. Then the M0 stood for if the cancer had spread or metastasized. And mine has not. Therefore, it’s a zero after the M. And that is my Colon Cancer on paper. T3N1M0.
I was so grateful I understood my own type of cancer now. She went over my single-spaced typed list of questions and thoroughly respectfully answered all my questions from the type of chemotherapy I had chosen vs what I did not want. Mine was called CapeOX and indicated I took Oxaliplatin intravenously followed by 2 weeks of Capecitabine pills. I had made the choice to use the pills instead of a more often used treatment called FolFox which is only intravenous chemo every two weeks for 6 months and needed a port surgically implanted to take the many treatments. BUT I was offered this shorter chemotherapy treatment plan because I fit into a new research study that indicated 3 months of treatment was as beneficial as 6 months. This was the other reason I chose this plan. To have it complete in 3 months – at least that was the hope.
In the meantime, it’s essential that the Oncologists watch over your CEA levels via blood work every few weeks. This is the only blood level that Doctors have to look at and try to determine if the cancer is reducing or not. But it’s tricky as the CEA levels can be false positives.
During the 4 months of my treatment (lengthened because of having to stop treatment for a Pet Scan and to stop the pills when the side effects were too severe) my CEA levels had increased every time I did the blood work which was usually every 3 weeks. It went from 2.9 which is considered “normal” and increased constantly until I was at almost 11.
Because of this my former Oncologist was telling me to do a fifth round of Chemotherapy. But I insisted my CEA levels were going up DUE to my chemotherapy. In my mind how could it go up every few weeks when we started at “normal” and the only thing different in my life was the chemo.
So with the new Oncologist I expressed my thoughts. She asked me if I was willing to do another Colonoscopy and Pet Scan to insure there had been no changes. I agreed to the Colonoscopy but really did not want another Pet Scan. After the first one I never wanted to do another. Plus I had just done one a few months earlier. Her concern was to become absolutely certain the cancer had not metastasized anywhere else before she approved my discontinuing chemo.
A few weeks later I had the colonoscopy. Knowing what it is like now, I was ready and truly it was over with before you know it. Just knowing what it is like takes away all the fear.
I told the gastrointestinal Dr. that I “knew” I had cancer when he did the first Colonoscopy back in January. And I “knew” this time he would not find anything.
When I awoke that’s what happened. My colon was cancer free.
During this time while waiting to do tests, I was not doing any chemotherapy. My intuition told me that being off the chemo would bring my CEA levels back to normal range. I was so sure of it, I did bloodwork before my next appointment with the Oncologist.
The second appointment with my Oncologist was on a Friday with Stephen sitting as always by my side. We waited a long time. But when she entered the room she was practically jumping with joy. She said, “Guess what your CEA levels are? They dropped all the way back to 3 which is considered normal at the LAB that did the bloodwork.”
I practically screamed with joy. I had done my four treatments. I had endured terrible side effects and my CEA levels had come back to normal once off the chemotherapy!
I was going to go home not having to take anymore chemotherapy.
OH MY GODDESS! I was so happy. I just wanted to text the world. Which I happily proceeded to do.
My new regime is to have bloodwork done every 3 months for a year to watch the CEA levels which is the Oncologists best line of defense to see if any cancer returns. And to have a colonoscopy every few years.
I had Fettuccine Alfredo and Tobin James Zin to celebrate! Seemed like a great way to start my healing process, physically, mentally and emotionally.
Since January this year, starting with the colonoscopy, then surgery, recovery, and chemotherapy, I have been the luckiest woman surrounded by loving caring people, who offered me the strength and support to keep going.
You never know how friends and family will react to life altering information. But my friends came through like a nation going to war.
I want to especially express my gratitude to those that have had cancer before. THOSE are the women who stepped up and threw themselves around me with love and support. They KNEW what I was going through and were there for me every step of the way. Some of these women had been long time friends, but we had never gone through anything this traumatic before. But they came back into my life with a vengeance and stood by my side every step of the way. From my good and hyper days to my severe side effect days. They nurtured me with kind words via every communication platform possible, from beautifully written cards, to texts, emails, and phone calls. I can never ever thank you all enough. You were like a cocoon for me to stay in, all safe and protected. (Cyndi, Rita, Ann, Carolee)
I had other friends who made sure my life was as close to normal as possible, inviting me out to lunch dates, drinks around the pool, or a casual bakery stop and chat. All of these helped me to maintain some normalcy in my life and I am very grateful to each of you. You helped me to balance my daily living with things to look forward to and also having someone to talk to and share my experiences and pain. You were tremendous emotional support. Thank you so very much! (Ashley, Connie, Adele, Geri, Steph, Cordelia, Bonnie)
And then there were so many more that sent me cards, or emailed or called just to check in. Every single one of these people may not know just what that means to me. I kept all the cards I received throughout the chemotherapy and hung them on the wall to look at all the time. I am such a lucky, lucky woman. You truly made a difference.
I was recently reminded by someone very special, over fabulous pastries and coffee, that I had told her the one thing she could do to help was to “keep in touch.”
And that is how I want to end Blog 8. The one thing you can do to help a loved one during a challenging time is “to keep in touch.” It doesn’t matter how you do it. Just keep in touch. Call, write, email, text. There are many ways you can do it. But keep in touch. You may never know when you make that difference in someone’s life. Perhaps they hear from you just in time when things looked darkest. Or loneliest. But the person who you helped will never forget. So, the next time you wonder how you can help someone going through surgery or chemotherapy……just “keep in touch.”
Thank you to my loving incredible husband Stephen who stood by me through all of this. He never left my side and he always held my hand. You are the best gift I’ve ever received in this lifetime. Possibly in many lifetimes. I love you forever and ever as we celebrate our 19thwedding anniversary tomorrow, September 13. You are my knight in shining armor.
And now….we can finally take that European vacation we had to cancel 9 months ago. Off to London, Florence, Tuscany and Rome! To celebrate a new day of living…….
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