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Jul 19, 2018 Latest post:
Sep 7, 2018
The following paragraphs are written by Jan when she realized she was about to have a “new focus” in her life. She was diagnosed with Stage 3 Ovarian Cancer in February of 2015. She has been so open with her family, close friends and colleagues during this journey, sharing emails of which I will excerpt her thoughts as she has been aboard this 3 ½ year roller coaster ride.
You are on this list because you are someone with whom I have shared something important in my life. It may be that we share grandparents and childhood growing up, joined families by marriage or an amazing career in OBGYN. I am writing because since my diagnosis on February 24th, I have received an outpouring of love, prayers and concern for how I am doing. I would like to use this email update method to efficiently communicate my progress with those of you who choose to read. Then I will use my discretionary time and energy to channel toward healing and doing the fun things in life that Gregg and I can manage to fit in between chemo treatments. For some of you, this may be TMI and I totally understand. On the other hand, I do like to write and I do like to ponder so some of this will be very therapeutic to me, so I beg your indulgence. We are all different in how we handle adversity, especially that which relates to our health. Health is so personal. I know many of you have and are privately dealing with disease and I pray for strength and success in your efforts. Having spent my entire career helping others deal with health issues, I prefer a more transparent approach. I do know that this will help some of you closest to me deal with your grief over my situation and that is a big part of why I am doing this.
Do not google Stage 3 ovarian cancer! The statistics are scary and include everyone. I am super healthy (otherwise, good grief!), young, strong, have an amazing health care team with access to the best state of the art protocol for treatment and have the most loving and giving support system of family, friends and co-workers ever… I know I will be far out on the success end of those bell shaped curves….
The back story:
For what it is worth, I had no symptoms. This past year I have been in the best shape of my life. Last summer I had some gastrointestinal symptoms….
On February 17th, a follow up ultrasound showed suspicious changes on the ovaries. My CA 125 was minimally elevated at 77 and surgery was indicated, although not for sure cancer. I met with the gynecologic oncologist February 23 and on February 24th, had the diagnostic laparoscopy followed by big laparotomy staging (hysterectomy, removal of tubes and ovaries, checking nodes, etc). The surgery was five hours long. My surgeon was meticulous in getting as much visible cancer as possible. The goal of surgery in ovarian cancer is to debulk the tumor, get the smallest pieces down to less than 1 cm and then let the chemo get at it. In my case, the crumbs left behind are less than 5mm and that is really good.
The standard of care chemotherapy for my situation is combination of intravenous and intra-peritoneal chemotherapy. I have two ports in me for this. The cycles are three weeks long and the goal is to do that six times. That takes me into July. I started March 5.
Maintaining a positive attitude:
I do not like the metaphor of “battling” cancer. I am basically very conflict averse. I consider this a life detour, with lots of hills and valleys and an occasional mountain to hike. As my sisters know, we love to hike! I am not sure what will be at the other end but I am sure I will be accompanied by all of you and I will make the best of it...
This will be new news to some and an update for others. I am disappointed to report that 24 months after completing chemotherapy for Stage 3C high grade serous carcinoma, the cancer has returned. Routine follow up of the tumor marker CA 125 and a CT scan of the lungs, abdomen and pelvis became abnormal in late September. I had surgery October 12 and am grateful that the only area of cancer was the peri-aortic lymph nodes that drain the pelvic region. The rest of the abdomen and pelvis, sites of most common recurrence were completely negative. Through a huge incision, my gynecologic oncologist was able to remove all visible cancer. This puts me in a better category for a favorable result with repeat chemotherapy, which will likely start next week. I am so grateful for my extremely competent and caring health care team!
Physically, I feel very strong. After all, I did bike over 600 miles this summer on my new, ridiculously expensive bike which I am so glad I bought! I even biked UP the Caribou Trail! We had a fantastic summer with lots of travel, including just being back from that bucket list trip to South Africa with safaris.
That said, I am emotionally numb as while this result could have been statistically predicted, I was really trying to be in the 15% that are cured. Now my goal is “prolonged secondary remission” and will do everything I can to achieve that. I have a strong faith that God will provide me the capacity to deal with this. And I am always looking for ways that my story or ordeal can help others dealing with cancer, both personally or as support to another.
I am most grateful to all of you for your support and love. I feel it deeply and it helps me when my thoughts go dark. As I said the first time around, writing these updates is very therapeutic for me and thus there is an ulterior motive. It also helps not to have to talk about me much next time we meet in person but rather talk about you! So I hope you do not mind me reaching out like this… Will likely email after my chemo plan is set and we’ll see how that goes. At least I still have that fantastic wig from last time. I was just getting used to my straighter gray hair….:(
Meanwhile, thanks for all the love and prayers I know are coming my way…
I last wrote around the time of my birthday at the end of April. It seems like an eternity ago. I had much to complain about and much to be grateful for. I reflect back on the intervening weeks and I just do not know where to start……Medical issues have interrupted our plans for the spring and summer. Thankfully, we are now in the last weeks of the “Baby Watch” to distract us in the most positive way.
Through cycle 4 of Gemzar and Avastin, it appears to be working (at least as reflected by a significantly dropping CA 125 tumor marker). Side effects have been minimal so if cancer was my only problem, this journey would seem relatively easy compared to what I am dealing with now. I still have my hair, but that could change…:(
The bowel issue is turning out be a formidable challenge. Since the first partial small bowel obstruction on March 21, I had been sticking to the low fiber diet religiously and was getting by without abdominal symptoms. But on May 15, everything changed. Horrible “gas pains” started disrupting sleep and despite eliminating dairy and eating less and less, the pain escalated. I went in the hospital for “bowel rest” that worked before but in the end, it appears on amazing imaging that I have a kink in my bowel that will not allow the bowel to process even gastric juices and saliva without backing up. This may be too much information but I share this so you will understand where I am in my life. I am home after 9 days in the hospital on home TPN (total parental nutrition) where I get all the vitamins, fluid, protein, fat and carbs that I need for 24 hrs in a 12 hour period overnight. Gregg has taken on the responsibility of administering all this and it is quite the process. I also have a surgically placed venting tube in my stomach that allows excess fluids to to be drained and the bowels to remain decompressed (replacing the tube in my nose). The goal is to do this for 4-6 weeks until my nutritional status improves and one of my chemotherapies, Avastin, which adversely affects healing, is out of my system. If all remains stable with no new adverse events, my gynecologic oncologist says he would consider surgically addressing the mechanical bowel obstruction with the goal of allowing me to eat again. Needless to say, this would improve my quality of life considerably but there will be significant risk. Will deal with that next month. I have placed my faith in God. And we are still on Baby Watch!
The remainder of Jan's story will be found in the next journal entry. There is limited space here.