I Do Go Down the Rabbit Hole of Fear

I think I was terrified for the entire year after I was diagnosed - stage 3C. There was so much that needed to be done to me - urgently (and I agreed with that urgency). And so much that changed my lifestyle and physicality in the course of just a few weeks. I know now, it was trauma.

Three hardcore chemo cycles pre-debulking, I lost my hair, lots of new meds to control side effects, and the emotional affects of sharing my diagnosis with beloved family and friends. The fear in my husband's eyes every day. Post CT, learning I had metastasis to my liver - stage 4 cancer.

Coping with treatment, covid, and everything inbetween

I was hospitalized for 3 weeks with debulking. My incision line opened me from top to bottom. Debulking done by my surgeon, a senior resident. Plus, liver surgery and ablation by a thoracic surgeon. My pain failed to improve post-surgery and when I started to run a temperature, I had to be opened again due to peritonitis (micro-leakage from my intestine).

I woke up to an ileostomy. The next few months were a struggle with surgical recovery, learning to deal with an ostomy, 3 more chemo cycles, and almost continuous unstable labs meant transfusions, IV hydration, yadda yadda. I spent that Christmas in the hospital.

Winter brought more of the same, but by March I was done with chemo, and in remission. I had surgery to reverse my iliostomy, same long suture line, plus a smaller one where my iliostomy had been, just as the hospital received its first big wave of Covid patients.

Volunteers and aids vanished. No visitors - universal masking: the fear in my nurses' eyes was almost tangible. I've never been so happy to stagger out hospital doors to the waiting arms of my husband.

Rebuilding to rebuild again

Spring came with a lot of self-directed rebuilding, but also huge changes to our lives due to Covid. All the early uncertainty of what it was, how it was transmitted, daily death statistics on an incredible rise. My husband on furlough from his retail job, and my job - that I had hoped to return to - disappeared as budgets were slashed.

The fear that Covid might end my (or my husband's, childrens, grandchildrens, extended family's) lives after all that I'd been through the past year to stop cancer.

And then, my cancer came back.

It's been a rollercoaster

The year 2020 through the present have been a roller coaster of hope and fear as my life has been extended through treatments (including 3 clinical trials). My tumors have grown, but slowly. I have no new metastasis.

But best of all, we've been re-united with family, post-vaccination, to celebrate holidays, birthdays, and anniversaries. We have a new granddaughter as of last fall, and I spend a day with her each week. I've been able to decorate 2 Christmas trees.

More life

Now my fears circle the dread of knowing that - sooner or later - this cancer will kill me. I feel the need to get more accomplished in preparation, but remain stuck.

Tons of stuff to give to people I love and tons of just "stuff" to get rid of. Messages to write that can go forward with those I love after I'm gone. I "should" investigate and arrange cremation, disposition of my ashes, a memorial. It would make things so much easier for my grieving family.

But I'm stuck in assuming more life while fearing death.

Would I do it again?

I don't fear where I'm going after I die. It's the suffering of my husband, children, my beloved extended family, and dear friends that I dread. And I don't know when or what I'll have to bear physically.

Will I need to be moved? How will my husband be able to cope 24/7, even with help? I think about these things everyday and fear.

Would I go through it all again? Yes. Without a doubt. The time I've won is precious to me. Do I want more time, even as treatment options narrow for me? Yes, again. When will my options run out? When will I, or my amazing physician, say "no more?" I don't know, I just fear.