Nov 17, 2020 Latest post:
May 23, 2023
I was diagnosed with ovarian cancer on Nov 7, 2020. I started with pain only in my right upper quadrant and right flank on August 30th. I knew something was strange and wrong so I went to the ER only to be told that my CT and labs were all normal and probably musculoskeletal. The pain was clearly worse with certain positions so it kinda made sense since I couldn’t think of anything else it could be. About a month later, I went to the ER at St Joes and the CT showed a mesenteric panniculitis on that right side so I thought that we had finally pinpointed the problem. Except no one knew what to do about it. My GI doc said that it was nothing and to take ibuprofen - that made me feel better. I saw a wonderful surgeon who very aptly said that this was just not acting like mesenteric and he thought is was a bullshit diagnosis. I agreed and it made me feel better. I called Mayo and they couldn’t see me until next year! The pain was very mild but persisted and I knew something was strange. So I insisted on an MRI of the right upper quadrant to rule out cholangiocarcinoma along with an MRI of the abdomen. These were negative except for a small amount of fluid around my liver. For the first time, I was startled and knew that I had to look at my ovaries. This was on Nov 2. On Nov 6, I started with new pain in my right lower quadrant. Even my doctor thought it was appendicitis. Now that would have been nice. And since I didn’t want to go to the ER, I ordered a CT (third one) on myself. This is what showed the peritoneal carcinomatosis, or multiple implants of the cancer all over my peritoneum. And somehow this did not show up on the MRI that was done 4d earlier! All of this can certainly contribute to my anger stage!
And so the journey began! On that Saturday, I was able to get ahold of Dr. Buscema, who is now my doctor. He is a specialist in Gynecologic malignancies and is a surgeon. He was so kind to look at my CT and explain everything to me. I personally spoke to Dr. Julie Zaetta who read my CT and she said she could do the biopsy and place a power port on that Monday. And those things were done on Nov 9 showing that this is ovarian cancer. My doctor was simply amazed at everything I had accomplished in just 2d. He is from Canada and he said that all that would have taken 6 mos if I were in Canada. That is the beauty of national health insurance! Boy am I glad to be in America!
I was very fortunate to be told of Dr. Bradley Monk by a friend, and my coach, Adriana Loschner. He is in Scottsdale and is big in ovarian cancer. He says his passion is ovarian cancer and I will be enrolling in one of his studies with immunotherapy. He was so kind to call me on a Sunday and talk to me for 30 minutes. He is beyond an angel and needs to be canonized as a saint! He is very very positive about this and has assured me that I will go in to remission. The problem with ovarian cancer is that it can return. He has published in the NEJM last Dec and the FDA has approved his therapy to keep one in remission. One is Avastin that stops the growth of the blood vessels that feed the cancer. The other is a PARP inhibitor. I think the one I will be on is Zejula. He said he wouldn’t be surprised if I was simply cured. Of course, this is simply music to my ears. Of course, I am scared. I don’t like being a patient. It is not my comfort zone. But I am SO, SO grateful for all the incredible doctors and nurses that have taken their time to talk to me and explain things. I can only hope that I have been this kind and wonderful to my patients.
So the plan is to start the chemo, certainly by Nov 24, and I am hoping earlier than that. Ovarian cancer is very simple and responds quickly and nicely to carboplatinum and taxol. In addition, I will be getting the Avastin and the PARP inhibitor. I will get the chemo every 3 weeks for 3 doses and then I will have surgery to remove the ovaries and any remaining tumor. But Dr. Monk thinks that there is an excellent chance that there won’t be any cancer left. Then I will get 3 more rounds of chemo. Then, I believe, I will get a total of 21 rounds of the avastin and I’m not sure of the PARP. I can only hope and pray that this will be successful.
Of course none of us ever know how long we have on this earth and what mishaps may come along. But we mostly live in innocence about it. Any day we can be taken but we never think about it. And believe me, thinking about it isn’t fun! But there is some peace in this process. I look at my life and I am so grateful for everything. I have a wonderful life and a wonderful husband and live in a wonderful country (well, maybe that last one is having problems)! And I have so many wonderful friends. I just don’t know what else a person would want in their lives! (Well except for the cure for ovarian cancer!). So I thank you all for visiting my site; and for loving me; and for praying for me. You are all my angels.