Susan’s Story

Site created on May 31, 2022

Welcome to my CaringBridge website. I am using it to keep family and friends updated and share my story.  Thank you for visiting.


I was diagnosed with Stage 4 Ovarian Cancer in 2016. That first PET scan lit up everywhere. It was overwhelming, as I had not had a single symptom until my lung filled with fluid as part of a cold. All other cold symptoms went away except the fluid in my right lung. I'd had a stitch in my side the year before, but in the ultrasound we were looking for gallbladder, kidney, other source, and the fluid was overlooked (ugh). I went through weekly chemo (carbo/paxil), then surgery, then more chemo (carbo/gemzar), and at the end of 2016 I was in full remission.

When I had my recurrence I went back to chemo, and 3-month scans. I never went back into full remission, but the treatment has kept the cancer at bay. It has not spread, or only showed up in other places very minimally. The only thing that bothers me cancer-wise is the fluid in the lung that comes back when we stop treatment. It has formed pockets and the lung is partially collapsed, so we can't drain the fluid.

The cycle of treatment has broken down for me this way:
6 months on chemo of carbo/doxil, 6 months off
6 months on carbo/doxil, 9 months on a PARP inhibitor maintenance drug
6 months on carbo/doxil, 4 months off
then most recently 5 months on a "light chemo" of cytoxan/avastin. 
With the PARP and the cytoxan I hoped to be on them for much longer, as in years, but the side effects eventually get me.

Every round I've lost something, and my baseline normal changes. I've gone from "remission," to "partial response," to "minimal response," to now, "stable." I'm lucky in that I can still take the carboplatin, but unlucky in that the side effects are getting worse so I can tolerate treatment for shorter periods of time and with shorter breaks before I need it again. It's kind of a yoyo: treatment until the side effects are intolerable, then a break until the fluid in my lung is intolerable, and back again.

If you're my friend, please feel free to contact me via email. Otherwise, leave comments here and I'll read them with gratitude! Every contact is comforting. 

Also realize that the "donation" link here is to support Caring Bridge, a worthy cause. Just be aware the money doesn't come to me or my site in particular, and this is a free service. 

Newest Update

Journal entry by Susan Sink

Dear Friends, Spring is always a strange time for us, and anyone will know this who has a seasonal worker in the house. A key member of the household who was pretty much always here is suddenly gone for days determined by jobs whose length depends on weather, site conditions, fire marshals, operating machinery, etc etc. Add to this is the fact that I need more care than I did last fall when the season ended. The cancer still seems pretty stable, all things considered. But the cancer is much more present, sometimes with symptoms I don't understand. Day by day has more meaning.

We're incredibly blessed and lucky to have Steve's sister Tina able to be here and help out, particularly with giving me meds while Steve sleeps, but also food during the day and keeping things running. We are very aware of what most families must face-- without a family member OR TWO able to provide 24/7 care on shifts, well, how does it work? It is challenging even for people who love each other very much,  but we know so many people have to pay a lot of money to hire people they don't know at all, often in a night and day shift. I can't tell you how much I admire those folks.  And if you can't afford it, the option is the hospital. I admire those people, too, those who make the very difficult choice of putting their sick loved one into the skilled hands of doctors and nurses on call 24/7. 

My cognitive abilities are also definitely affected. Focus, memory, length of time I can use my brain for something, including in some cases visiting on the phone. 

This will be a short update. I would say we are all here looking forward to warm weather. The idea of being on the porch instead of the bedroom, even if just to sleep there instead, or listen to music or possibly have the focus to read a book. I haven't read a book in months, in part due to holding a book up, but also found I just can't do books on tape, which was my last attempt. I fall asleep and can't find my way back in the text at which I've forgotten too much. I started a long and complex poem which has a very rich image at its center, one connecting my body to a very old, rare tree, one that appears on first glance to be dead but is alive, one that appears to be very, very strong but is rejected by not being beautiful. I can't make the poem work and need to strip the poem itself bare and just tell a story I know about the tree as simply as I can, but it refuses to be simple.  Instead I maybe need to find another way into poetic materials and actually go read some of the old favorite poets, Mary Karr's recent work and Adrienne Rich's 1980s-90s work has come into my hands as possible sources of inspiration or modeling, which would build on the work of EXAMEN, that worked with other writers and their work. 

Do continue to pray for me, and thank you. One of my SILs dropped off some daffodils after Easter and they are the ones with the tiniest flowers, yellow and white, like the tree they almost seemed dead before they'd gotten born/bloom. But now 5 days later they are definitely in full bloom.. 

Thank you all for remembering me and reaching out and staying in touch. Such faithfulness you have shown me!

 

xoxo Susan

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