First time there were pretty clearly presented options for treatment and actually a course to a cure.He knows that the next time wasn’t good either, but had some assurance that there was a pretty good chance after the storm. It was his diagnosis of his “rare” Papillary Kidney Cancer that turned our focus to be grateful for many things… even the oddest things. There was the scan that he needed to have to see how he was doing with his prostate cancer after just finishing 40 radiation treatments as a part of preparation for a long-overdue knee replacement. During that scan, a growth was noticed on his kidney that turned out to be the first occurrence of the PRCC beast.
Then there was a pretty radical surgery to basically cut him in two and remove most of one kidney. Because of the location and nature of the growth, there were many unknowns even for the surgeons. We are grateful that the beast had not attached to other organs. Dodged a bullet there. Oh, and there was the opportunity to get that tough and scary surgery much sooner than planned. Man, we were grateful for that. The GP’s comments in the months following were rather dismissive and something to the effect of “turns out it was really aggressive cancer and the finding saved your life”… and no other comment or education about what if PRCC came back.
As a farmer, aging and ailing to the point that you can no longer do what you need to get the job done in the way you planned or sometimes not at all… for the people who depend on you… Gosh, it’s all been a hard thing to watch it go down. I know it was a struggle in the nephrectomy recovery. But, back to the gratefulness, he recovered mostly from the surgery and is still here for the struggle as opposed to the alternative.
Music, Sunday school with Veterans, metal work, journaling, and more music – we call it good therapy. It’s what’s got him through some really tough stuff in the cancer years. And family, too. But when the rare bird PRCC came back, the options for treatment and path just got overwhelming. The medical support system through the VA that helped through the earlier challenges was just too much to navigate, and at times far from helpful – no one has time for that. And to know that there is no cure and that PRCC is so aggressive has been a serious test of faith and patience. It has also guided him (well, us) to cling to those things we need to be grateful for. We refer to his new cancer doctor and care team as “the nicest, smartest people we wish we never had to meet”. We are so grateful for the quality of care and compassion from the Southeast Cancer Center in Cape Girardeau, Missouri.
When I went away one weekend for a work trip and left myself logged into “The Facebook” on dad’s tablet, he took advantage of the time to poke around at food pics and animal videos, and found my “PRCC family” in the patient and caregiver pages. I had told him about it, but did not push him to connect with it until he was ready. In the pages and posts, he found people with the same condition, uncertainty, worries and fears. We wish that such groups did not even need to exist. But we’re grateful for the KCCure network and resources, for the information, support and the ability to connect with people that share the same struggles. We are grateful that there is an effort from KCCure, working feverishly in the area of advocacy and research for a cure.
Here are things that help us!
Journaling – It started with keeping track of appointments, meds, reactions and symptoms. Now he makes room in the pages to reflect and let it out.
Reading – he makes a conscious effort to balance the medical and care reading with other things – poems, inspirational books, and not politics!
Activity – Walk the dog, watch a movie, getaway, try a new restaurant, karaoke.
Prayer – A lot of it!
Thank you Lane and Stephanie for sharing your story with KCCure and showing others that they aren’t alone!
