Spoiler alert: Not every journey ends with a happy ending. If you’re at the beginning of your journey, consider reading this article later. Many caregivers will benefit from reading this article. No matter where you are in your journey, PMP Pals has hope for you.
This blog entry was originally written in August 2013 by Therese Surges.
My husband, Keith, was diagnosed with Appendix Cancer, mucinous adenocarcinoma and peritoneal carcinomatosis in October 2010.
Like many reading this, we were shocked that there was such a thing as appendix cancer. While we loved our local oncologist and his treatment consisted of treating this as it were colon cancer* he was very gracious in sending us for further opinion and not at all intimidated that he really had no clue about pseudomyxoma peritonei.
Long story short, it was through internet research that we learned this cancer is “rare” – “one in a million” “incurable” and further reading brought us information about cytoreduction and HIPEC, a possible chance at a cure and if not a cure, an extension of life. As a caregiver, I have found my role to be almost as imperative as the patient because often times the patient is so stunned by the prognosis that they can’t think straight. Don’t get me wrong; when we first found out about Keith, there was a period of about six weeks in which I was barely functioning. I didn’t want to lose him. He was 55 years old and we had a lot of living left to do. But I took the role of information guru – I learned the lingo, the drugs, the surgery and I put into layman’s terms the best I could so that Keith could understand and make informed decisions. We traveled the same road as all of you reading this – with hope and with purpose. After Keith underwent six months of chemo with none of them helping to shrink or even keep the tumors at bay, he went to a Surgical Specialist. There was some concern that his name wasn’t on the “list” of surgeons but once we met him and he told us he had been doing the surgery for over 8 years, though scared, he put Keith’s mind (and mine) at ease by explaining the disease in detail, how most of patients have done post op and what statistics were (for him). Keith had cytoreduction and HIPEC on July 1, 2011. His surgical score was a “1” which meant though there was some millimeter tumor on the small intestine; the hope was that HIPEC would eradicate those tumors.
It was not to be. Within 3 months the cancer had returned. Keith began different targeted therapy regimes to no avail. By the six month it was determined that chemo should be stopped as it had no benefit other than to weaken him.
As a caregiver, I watch him closely. I live life with him. I hold on to what has been given to him; an extension of life and an amazingly good extension! I am here to hold his hand, give him his meals, tell him how proud I am of him, love him and thank God for him every single day. This man, who has cancer throughout his peritoneum and pelvis again, extensive tumor on and between small intestine, liver, diaphragm, etc., never complains. He goes about his daily routine without worrying too much about tomorrow because we are living for today. We know that statistically things may change at any time but we do our best not to let that stop what today has given us. Today has given us an opportunity to make new memories, even if those memories are just sitting together in our family room looking at the TV or sitting behind our computer screens.
As his caregiver, as his wife, it is my responsibility to make sure that he has the best care possible and I will continue to give my all to him. It is also my faith that sees me through the troubling times – we are all here on this plane for such a short while. I will make these days the best days possible.
*Local oncologists will tell you this cancer is treated like colon cancer. We have never been hung up on that verbiage because in all honesty, there is no known protocol for appendix cancer and pseudomyxoma peritonei other than cytoreduction and HIPEC or EPIC or a combination thereof. There are no chemo drugs specific to appendix cancer, but the ones used for colon cancer do appear to help some patients and that is why I believe these doctors say they will treat it like colon cancer. Treat it = chemo.
Update to this writing: Keith lost his battle in December of 2014, after spending an amazing 11 months with hospice services in our home. It was, and will always be, our story of love, survival and hope. I continue to have hope for others and believe that research will lead us to better treatments and surgical technique is being perfected every day. I am grateful to organizations like PMP Pals, who provide information for those newly diagnosed to get the right treatment at diagnosis.