Tuesday, September 28, 2010

How's Kay?

This is the question on everyone’s mind and the question I am asked numerous times every day. Each time I think about who’s asking the question, and decide on which answer to give. Is this a question that begs the same answer as, “How are you today?” If so should I answer with the equivalent of, “Fine thanks, and you?” Is this a factual question from a concerned person? If so the answer is that she feels quite well, but is in the early stages of recurrence of her ovarian cancer. We’re hoping that starting chemotherapy now will lead to her continuing to do well. Thanks for asking.” Is this a close friend or family member who wants to have a conversation about how she is doing physically, emotionally, and spiritually? If so I often don’t have the emotional energy or time to give them the information and love they deserve, so I’m going to try to lay it out here for all who are interested to read.

First we just got back from a great vacation. We left for Maine on my birthday, Sept 2, and spent a terrific week with my family, and with Jean and Marc, at our camp on McGrath Pond in Oakland, ME. We ate lobster, got to know Morgan, Allison and her husband Josh much better, and just enjoyed ourselves. We also visited Betty and Don Caton and their girls and new son in law at Little Sebago Lake after picking up Jean. We mostly slept through the rain effects a hurricane, and swam every day. My Mom and Dad are doing pretty well, and it was a great visit.

After a week, we left for Rome, and on arrival after a red-eye flight from Portland, ME à Philidelphia à Rome dropped our bags at a hotel in town and walked to the Coliseum. It was daunting to walk where the ancient Romans walked, and our sweat may be mingled with that of Caesar, as it was very warm that afternoon. That night we visited the Spanish Steps in the city lights, and had our first of many great Italian meals. We had our first 3 hour-four course meal. I could get used to that style of eating. A good bottle of red and lots of time to talk make a great meal really memorable. The next day off to Tuscany, a week at Borgo di Vagli, a 14th century hamlet far from anything, and a week of day trips to Florence, Assisi, Cortona, the Adriatic Sea, and Montepulcinno. Our trip ended with a day back in Rome, a whirlwind tour of the Vatican Museum and St. Peter’s Basilica, and a 20 hour, one stop flight home. Overall it was a trip to remember. I decided to post prior to having a real photo gallery to link to but here are a couple of photos to get a flavor.




Borgo di Vagli



Looking down into the Coliseum


The Spanish Steps at night

The last week has been a whirlwind of catching up, getting ready for Kay to start chemotherapy again, and preparing emotionally to start the fight again.

So, “How’s Kay.” The real answer is complicated. Physically she is still feeling quite well. She got through the initial phase of her PARP inhibitor study without any complications. She still feels strong, is exercising regularly, and feels about 95%+ in terms of health. She has been more fatigued for the last month or so, and feels slightly full in the upper abdomen, where we suspect the remnants of her cancer are hiding, aolthough no imaging has found it yet. Spiritually she stays strong. She feels and needs continued prayer support. Emotionally the situation is much more complicated. She finds it hard to dive back into chemotherapy when she feels so good. Last time we were desperate to start chemo, because we could literally see and she could feel the cancer destroying her. Chemo was clearly her friend at that time, and she could honestly call the port on her chest wall, “My life sustaining port.” Now we are treating a cancer that is only making itself known by a number we see on paper as her CA-125, and by this vague fatigue. The number today was 58, continuing its upward march, and the reason to start the chemo. She really is dreading losing the sense of normalcy that we have enjoyed for the last 9-10 months. She fears being on chemotherapy the rest of her life and never feeling fully strong and healthy again. She asks me how long until I’ll become the, “Finder of things again.” Chemo causes her to lose just a tiny bit of her sharpness for remembering where things are and she seems to misplace more stuff. The joke is that chemo knocks out part of the second X chromosome that somehow allows women to see things other than at eye level. We’ve had our share of tears over this anticipation of loss. Kay has had trouble sleeping, and I could sleep all the time. Still overall we are emotionally holding up pretty well, and feel ready for the battle.

Today Kay had her first infusion of the first course of her chemotherapy for the cancer recurrence. We did our old hypnotherapy regimen this morning and the infusion went uneventfully. Sometimes I think her judgment is impaired, as she is now out for a walk with friends, just 90 minutes after arriving back home. She thinks fresh air is going to do her well. I suggested rest, but … This chemotherapy regimen is a much more time intensive schedule than last time. She will get Carboplatin, Gemcitabine, and the PARP inhibitor on day 1, the PARP inhibitor on day 4, Gemcitabine and the PARP inhibitor on day 8, and the PARP inhibitor on day 11 of each 21 day cycle. She dreads spending four half-days getting chemo every 3 weeks. Still, Kay being Kay, she has a road trip in her plans for the first “off week” when Jean is taking a week of vacation and they are going somewhere fun together. She is hoping, probably realistically, not to lose her hair this time, though we just looked at some pretty cute photos of Kay without hair. We are both praying for great success in suppressing and possibly eliminating the cancer this time. We know that cure is not likely at all, but miracles happen. I want to thank you all for your prayer support and friendship
I hope this marathon post updates you all, and I trust you’ll keep Kay in your prayers. Love to all.

2 comments:

Chelsea said...

Sending you love, prayers and well wishes, Pullen Family! Good luck Kay! You're a fighter, a survivor and I know you'll get through this! xoxo

Shanley and Ron said...

Our prayers are with you too. You have a lot more memories to build. Stay strong!