And my 5th one with Elahare which so far seems to be working. My numbers went down again - from 216 to 146. This is a very good thing.
So, chemo is becoming very routine. This time I did not the see the doctor ahead of time because she was out of town - we had a televisit yesterday. So, the whole thing took three hours. At this point John has his routine here - he gets his chair settled and in front of the TV and turns on CNBC. At 9:30 we watch the market open and he is happy because the "futures" are up - whatever that means. I now have a port which saves time - the nurse no longer has to go through the search for a usuable vein and I get to use both of my hands for my I Pad so I can easily read, do puzzles and send texts. It is all the new norm for us every three weeks. I am grateful but a little tired today.
I have had a lot of support from friends and family on this cancer journey and it has made a difference. There is a group I have not written about that has also been important to - The GO group - a support group for women with ovarian cancer. I wrote about them for the readers and writers salon and will share it with you.
An Unusual Tribe
I have a new tribe in my life that I have found to be important and very supportive. What is strange about them is that I have yet to meet any of the women in person. It is the Gynocological Cancer Support Group. We meet on zoom once a month and also communicate through a what’s app text chain. It is surprising to me that these discussions have been so lifegiving and informative.
On our monthly meeting on last Thursday I connected with eight women who are living with cancer and our facilitator Trinh. This month we did not have a speaker and so we spent the hour filling each other in on where we each are on the journey. I noticed that five of us had short hair and are probably coming back from the hairloss experience. We also have shared our common issues – fatigue, constipation and neuropathy. Each have our own unique path in trying to live with and possibly heal from this terrible disease.
One woman talked about how her numbers we going up for the CA 125. She has a recurrence of ascites which is excess abdominal fluid caused by cancer. I had that at the very beginning of my diagnosis. I had 12 pounds of fluid drained from my stomach. She is emotional relating her fears. We have all been there.
Another reported on the side effects from her new chemo. She had been on Elahare which is working for me so far and it didn’t work for her. Now she has flu like symptoms for one week following her infusion.
Another was diagnosed over 12 years ago and has been on and off with chemo ever since. Sjue gave a testimonial to the power of prayer, After she was anointed and prayed over, half of her cancer disappeared. And I listen to her and wonder if I am praying enough.
Amanda, who is in her late thirties was not present. She has been working through her bucket list. Last year on her birthday she was in Alaska – this year she is in Hawaii. My bucket list is not about places but people. I want to be with the people I love and have experiences with them like family vacations and hootenannies. Amanda recently celebrated her 100th chemo infusion. I will have my fifteenth on Wednesday.
All these check ins remind me that I am not the only one on this often confusing and difficult journey. All of us know the suspense every three weeks of having a blood test or a pet scan which will reveal what is happening with within our bodies. Is the disease growing or shrinking?
We also share the specter of what happens when the time comes that the chemo stops working and no more clinical trials are available. There are three that passed away this past year and it is a reminder for all of us. The sense of foreboding in unavoidable.
However, the shared reality is that life can be good and we can seek joy and beauty.
Amanda is an inspiration to all with her bucket list and indomitable spirit. In our text chain women frequently post pictures of the beautiful places they have visited. We also share articles about cancer and updates about our struggles. I remember posting with Amanda when she was in the emergency room at 4 in the morning. I also remember following my second surgery posting this myself: “I am in the hospital following surgery, in pain and wanting to give up.” I am allowed to be vulnerable and honest during the dark times. And the responses were compassionate and inspiring and real.
So this new tribe has been a gift. I know that I have more support systems than many of the women but this offer me an opportunity to live in reality about the ups and downs of living with this disease and the blessing of having some women in my life who are going before me and showing me what courage and good humor and connection can offer us all.
