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.

Another Port - Thankfully No Storm

Unfortunately a poor weather report in the form of a rising CA-125 makes this necessary. Kay cruised through the ordeal of the PARP inhibitor trail, and now is going to get the PARP plus two types of chemotherapy. I'll outline this in more detail, this is just a heads-up before I head to work for the morning and to be with Kay to get this port this afternoon.

Today Kay gets her port back in to be able to start her chemotherapy again Tuesday. The dreaded NPO again, though not until 9 AM an only until she gets home this afternoon.

Keep Kay in your prayers today, and next week as we go down the treatment road again.

Suture for a Living: Time for Teal Toes (Again)

Suture for a Living: Time for Teal Toes (Again)

Study Done - Gone on Vacation

A quick update before my last day of work before a long vacation. Kay found out last night that she is done with phase 1 of the PARP study, she did not have to return to collect more excrement. That's great. Now we finish packing tonight, and head for ME tomorrow AM. After Maine we are excited about lots of Italian food and culture in Rome and Tuscany.

PARP Trial All Good

Kay is home after her 6 day, 5 night stay at the Charles River medical trial center in Tacoma where she got her first infusion of the PARP inhibitor, and had extensive testing done to study how it passed through her body and was excreted. She got home yesterday, and is doing great. Now a quick couple of days to pack, plan and fine tune or vacation plans, and we're off Thursday for a week in Maine then 9 days in Italy.

I just got back from a 3 day birding trip. Brett was the man, visiting Kay much of the day on Friday, his 22nd birthday, and bringing her home yesterday while I was off playing.

After our vacation Kay will start her chemo. We're mostly trying not to think too much right now, and just go have a great vacation.

Love to all.

Ed

Now to Collect the Toxic Waste

Kay did great today with minimal side effects on getting her first dose of the PARP inhibitor. The medication was radiolabeled, i.e. tagged with a carbon-14 radioactive marker, and for the next 5 days she is primarily there for the study personel to collect as much of Carbon-14 as possible as it exit's Kay. THey need to figure out how much is renally and how much hepatically metabolized. The hepatic metabolites primarily come out in the stool. The air there has a not-so-faint odor of excrement, as the collection of the #1 is pretty simple, but who wants to collect #2.

I had a nice evening with Kay, as we mostly cuddled on her twin bed and listened to her iTunes. As any of you who know Kay, the primary thing on her mind was food. She got them to make a special run for fresh fruit and veges today and vege dip, so she is getting her 5 servings daily. From now on it's mostly going to be trying to keep from going stir crazy, and waiting to excrete the drug.

Prayers of thanks for an uncomplicated infusion, and for patience and endurance for Kay.

Thanks to all.

Ed

Charles River and the PARP Inhibitor Trial

As the old saying goes we've got good news and bad news.

First the bad news.

I might as well get it out of the way. Kay’s cancer is trying to come back. Since her fifth course of chemotherapy her CA-125, the primary biologic marker of her ovarian cancer, has been very low. The range had been all <10 until about 6 weeks ago. At that time her level was found to be 27 on her routine follow up visit, and when rechecked a week later was 30. This was of concern because it likely signaled that her cancer was not cured by her initial chemotherapy, and had started to grow again. She had extensive imaging done, including an MRI of her abdomen, and CT scans of her pelvis and chest, and no single site of cancer large enough to be seen on these techniques was found. Still we were told, and know, that it is likely recurring in multiple tiny areas too small to see on imaging tests. She waited a month, and on testing again the CA-125 was 42, more evidence that the cancer is growing.
We have been researching her options, praying, and talking a lot. Thanks to her connections with Rob McCroskey, her primary oncologist, she has been able to get accepted into a study of a new and promising type of anti-cancer drug called a PARP inhibitor. See my post on DrPullen.com today about PARP inhibitors. She was admitted to the Charles River research site in Tacoma as one of 8 persons nationwide to be enrolled in this study. She is literally under lockup for 6 days and 5 nights to complete the first phase of this study. She will receive the drug as a radio-labeled infusion, and they will be doing pharmacokinetic studies for the next 5 days. Then she’ll return in 5 more days for an overnight stay.
After that she will have access to this PARP inhibitor to use as an adjunct to chemotherapy for as long as the cancer stays responsive, i.e. does not show signs of progression. We pray, and ask you to pray, that this will be a very effective drug for Kay, and that her cancer will be cured or induced into a long remission.

Now the good news.

Kay is an exceptional advocate for getting what she needs. Anyone who knows Kay knows that she is not one to be shy about asking for what she wants. We have had a trip planned to visit Maine and then go on to Italy in September for some time. She has arranged to get this initial PARP study done just before we leave, to go on our trip, and to start her chemo after we return. She has also arranged to have the timing of the cycles of treatment work out so that our Thanksgiving trip to So Cal will fit between courses, and not require a “drug holiday.” In addition she has managed to get into this PARP inhibitor study, at least a couple of years prior to this promising drug being available in any other way.
So how can you all help. First pray hard and often. During Kay’s initial battle with this cancer, we could physically feel the power of prayers of support from our friends and family. It was awesome, and we want you to ramp it up again. This is going to be a long haul, so hunker down with us for the long term. Second, please treat us as normally as possible. Kay feels not just good but great right now. We are really trying to maintain a semblance of our normal lives, which are blessed and very good. We don’t need a lot of help right now, but may at some time in the future. We’ll not be hesitant to ask for your help when we need it. Right now we are just waiting to see how all this works out. Kay is going to be really busy tomorrow and the next day with this study. E-mail is probably the best way to send your best wishes and support. She can’t have many visitors, and she will invite anyone she is able to see, but cannot have drop in visitors at least for a couple of days.
So far Kay has tolerated every type of treatment like the incredibly strong woman she is, and we anticipate more of the same with this course. Still her energy level is likely to drop, and I’ll try to keep you all informed through this blog. Thanks in advance for your prayers.
Ed