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Journey to Journal
Friends and family have strongly suggested for more than a year now that I journal my cancer experiences on a Caring Bridge website. I resisted the suggestion because quite honestly the only people I've know who had Caring Bridge websites died. And I couldn't see myself in that group.
But I've just read the website for a young friend who announced on her Caring Bridge website that she is in remission. What an uplifting thing to read. Between that and the fact that this doesn't seem to be the temporary "bump in the road" that I first expected, I guess I'll give it a go. I do think it will help my family to not have to answer so many questions all the time about where we are in our fight. And it is "our fight". While I am the one who is getting poked and prodded, ingesting poisons to try to kill this damn disease, my family is right there with me. John is at every appointment with me, getting every piece of news with me, hugging me when I'm scared and supporting me every step of the way with love and humor. And the kids are extremely supportive as well, attending some appointments, helping me when I am not feeling the best and most importantly staying in touch frequently, keeping me included in their lives and giving me numerous reasons to live.
Since this is my first entry, please indulge me and let me start at the beginning.
Fall 2015 - At a regular yearly well-woman visit, my fabulous OB-GYN Dr. Doss mentioned I was anemic. No worry, I said. I've always been borderline. But combined with my complaint of night sweats, Dr. Doss must have been concerned. He told me to begin taking iron supplements and to come back in 2 months. Well, those of you know me well realize that I never would have gone back. But at 2 months, I got a "reminder" phone call of my appointment for the next morning. I didn't realize I had an appointment, I said. And they assured me that I was only scheduled to come in to the office for a quick blood test and would then be on my way. So I figured why not ... they had gone to all the trouble of calling me, so I went to get stuck.
Long story made short, my anemia had only gotten worse so the search began for what was causing it. Several months and numerous tests later, on Dec. 15, 2015, I was told I had large mass on my right kidney and that it was cancer. Later that day, I received word that my Dad had passed away, making this a date I will never forget. His passing, while sad, also was something of a blessing. He never had to know that I had cancer, and it enabled us to gather as a family. The support and positivity I felt from my siblings, nieces and nephews helped us all more than I can describe.
After some consultations regarding my situation, it was decided I would have the kidney and the tumor removed at MD Anderson in Houston. The odds were good that the surgery would take care of the problem and I would be back to normal. So surgery was scheduled for Feb 1, 2016. Not a fun experience, but I recovered.
The bottom dropped out of our world in March when John and I went for what was supposed to be our 6-week visit, expecting to hear "you are great and good to go back to your life." Unfortunately, the surgeon quickly dropped the bomb that the recent scans showed the cancer had metastasized (in my words, jumped) to my lungs. With surgical precision, he also let us know that there really is no cure for advanced kidney cancer. I promptly informed him that I wasn't ok with his prognosis because I had too much to live for. I have kids to get settled in this world and future grandchildren to meet and to get to know! Important stuff that I couldn't let cancer screw up for me! He politely listened and then sent us off to see an oncologist who could help direct us as to our next steps. He did tell us, "that our attitude would be our paintbrush." John, who loves a good analogy, latched on to this quote and it has given him strength throughout this last year.
Our first try to stop this hideous C-Monster was high-dose Interleukin 2, a nasty drug that you actually have to receive a week at a time in the hospital. Unfortunately, after 2 rounds of that immunotherapy, they discovered my cancer wasn't responding to it. Our next stop on the cancer-drug tour was an oral "targeted" drug called Votrient. The nice thing here was that I could take it at home. The negative was that home was about the only place I could be because the side effects were pretty drastic. That drug actually worked for a few months and my tumors were shrinking. Unfortunately, we discovered in December that it had stopped working. Not only had the tumors in my lungs grown, there was also now a tiny spot in my brain.
That brings us almost to today. I had radiation to my brain in January to kill what they continue to call a "tiny" spot. We will have a new MRI next week to see if it has been destroyed. And in late January, I began a new drug to work on those spots in my lungs. I am now having an IV infusion every two weeks of novolomad or Opdivo which studies show can prolong life.
I am quite convinced that the third time is going to be the charm and that this will work to keep me around until they can find a cure. As I told the original surgeon, I have much too much to live for to accept anything else.
What this journey has taught me is that none of us are guaranteed tomorrow so we'd better live for today. Since the diagnosis I have taken several major trips including: going to Wisconsin to see our youngest graduate from college; gone on an Alaskan cruise with my siblings; to Philadelphia for an impromptu trip to take in a Barbara Streisand concert; to the Rio Grande Valley to celebrate my father-in-law's 90th birthday; to New York City with my daughter, sister and niece for a "monumental" birthday trip; to Sonoma, for wine tasting with some girl friends; New Orleans with our family to ring in the New Year; and most recently San Diego with John. And if I have my way, there will be many more trips to plan! And we are in the midst of planning the wedding for our eldest child, Valerie. I am really excited about her wedding and about family getting together to celebrate!
Please forgive the length of this post, but it has been an event-packed 14 months since we began this journey. I am not sure how often I will post, but I will try to keep it updated when we have news and/or adventures to share! And I hope to some day be able to post, like my young friend was able to do, that I am in remission.
Thank you to all who have prayed for us, sent us cards and flowers and brought us meals. Please continue to keep us in your prayers. I am not certain what God's plans are for me, but I am certain that he is in control.