This past week was very busy with blood work, a pre-chemo checkup and two days of chemo...all packed in an unpleasant atmosphere at the cancer clinic which had to accommodate six days of patients into 4 days due to the holidays. I'm usually a very "patient patient" about tardiness saying to myself that "someone needs the doctor more than I do". Well, this time I was somewhat depressed and almost resistant about going through with the treatment - let alone cooling my heels for 4 hours for my checkup. I truly surprised myself in that I've always embraced chemo but this time I felt so well that it seemed unfair. My CA125 was in line after the first round of treatments in May - this was to be my third time. Surely I didn't need another two days of infusions - not me!? Lessons to be learned.
Every ovarian cancer patient is different and every ovarian cancer patient has a unique "normal" CA125. Brief recap - the CA125 or tumour marker is a blood test that measures the level of cancer antigen #125 in your blood - an indicator of what's going on inside you. The "normal" number as described in classic clinical fashion is around 35. A number less than that is considered very healthy - a doubling of this number usually indicates that the cancer is progressing. My number is presently 15 but my oncologist and I have decided that my "normal" is around 5. This is a very arbitrary decision based on the level that I've been able to achieve after each regular course of 4-6 chemo treatments.
To add to my malaise, a very odd thing happened the previous weekend. I had hosted a baby shower for my niece and was so happy to have all of my sisters and other members of our extended family together for the first time in a year. After the party, we travelled up to the lake occupying two cottages for several days of levity and good cheer. One of my sisters devised a flag signalling system for the cottage next door. The system was to be "half mast - we're not ready for you to come over....full staff - come on over - cocktails are served". Well, a couple, who are very good friends and neighbours of ours at the lake, saw the flag at half mast - saw all the cars including licence plates from the USA - and jumped to a very strange conclusion. The next morning, they saw me at the beach and both cried - saying that they thought I had died! At first we were all too stunned to react other than to laugh but eventually it sunk in. Can you imagine?
Enter Angel #1. Wednesday was chemo day 1 and I sat in the waiting room for almost 2 hours beside a lady who probably weighed 85 pounds - was as feisty as could be - said she'd been dealing with ovarian cancer since 2008 and had a CA125 of 11,000. I said she must have been hiding wings under her T-shirt because she surely couldn't be alive with a number like that. She went on to say that her husband had left her two months after her original surgery and that she'd been coping on her own since then.
Angel #2. Thursday was my mega-infusion day - 7 1/2 hours which ended up being 9 hours with all of the patient overflow. I was once again lucky to have met another ovarian cancer patient who was also on a slow infusion. We chatted for 5 hours and it seemed like 1. She had been diagnosed with very advanced ovarian cancer - metastases to the bowel and stomach. She has had a stent put in her stomach and is living a relatively normal life - except for the severe fatigue from the chemo. Of all of her surgeries and traumas, her only complaint was missing playing golf. She also said that she had no idea what her CA125 was and it obviously didn't matter to her.
Angels a-plenty then flew on Friday when I realized that most of my family forgot that it was a chemo week and so I very happily concluded that my educating them - teaching them to accept this disease on a chronic rather than catastrophic basis - is finally part of the new normal.
I was delighted to have connected with two new Sunflower Sisters - share our web info with them and learn things from them which will hopefully help others by incorporating their stories and procedures into the site. Whether you have a CA125 of 15 or 11,000 - there are angels everywhere waiting to help - you just have to be open to seeing them - wings or not.