Looking Back at 2012

Kay and I were reminiscing about 2012 yesterday and we were surprised that we both remember mostly the good parts of the year.  2012 has been an incredibly eventful year for our family that roughly speaking involved two parts.  The first part involved Kay’s no-holds-barred attack on her ovarian cancer recurrence.  From Jan through July she went through first surgery to try to remove the known remaining tumor, then an aggressive and very difficult combined intra-peritoneal and intravenous regime of chemotherapy, and finally a course of whole-pelvis radiation to shoot for  a long-term remission or even what Dr. Swisher hinted at, a cure.  The emotional highs and lows involved in this undertaking were tough at times. First the surgery where no cancer was seen in the abdominal cavityà great news, followed by news that the surgical margins where the cervix was removed not being cancer free à bad news.  This shift in prognosis came in just a few days.  On the tail of that came the realization that the intraperitoneal chemo was going to be much tougher than any chemo Kay had faced yet, while the whole time dreading the unknown of radiation to follow.  The discomfort of the chemo and the fatigue of the radiation seemed to drag on forever.  Kay really hates feeling like she has to just rest and not be able to do much more than just make it from day to day on these treatments.

In late July Kay finally started to get some energy back and we started planning more fun, travel and higher energy activities. We even took a hike at Sunrise on Mt. Rainier, getting close up looks at mountain goats and spectacular scenery. We took our summer trip to Maine and made plans for a fall trip to the mid-Atlantic area and our December trip to Cabo San Lucas. Then just 2 months after her last radiation therapy, and before our east coast trip, we learned that her tumor marker, the CA-125 level, was starting to climb, and hopes of a long remission or cure were dashed.  All of this led to yet more doctor appointments, consultations with Kay’s Seattle Cancer Care Alliance surgeon, and looking at options from here. 

The consensus is that Kay should not hurry to more treatment and that the primary goals of treatments in the near future need to be to prevent progression of the cancer to an advanced stage while trying to minimize side effects of treatment.  The goals of long term remission from an aggressive course of combinations of chemotherapy have not been very effective and Kay needs to instead focus on living with cancer and managing this with the least toxic regimens available. There is always the hope of a breakthrough in treatment that could give better results at some time, but currently available treatments have not done more than less toxic options may provide. We have tentative plans for relatively easy treatment when the cancer starts to progress to a stage where Kay feels less well, or there is evidence of cancer progression other than just the CA-125 marker.

Despite all of this Kay feels strong, healthy and really good right now.  Her spirits are high, and physically she is near 100%.  We just got back from a great 2 ½ week Mexican vacation, half with friends then half with family. We are home for the holidays and life is good.  We don’t anticipate further treatment for some undetermined number of months and are enjoying life.  Looking back at the year we both are amazed that we feel like it was a pretty good year, mostly fond memories, some great times, and the difficult times seem like a hazy distant memory.  We joke that this is the remarkable ability of the human mind to block out the bad memories and focus on the good ones.

Both of our children continue to thrive, Jean working at Blue Nile diamond in the accounting department and Brett running his own company of web assets while both live in nearby Seattle.

We are grateful for the continued love and support of all of our friends and family, for the joy and peace of Christmas, and for these months of feeling strong and good. Thanks for all of your love and prayers.

Kay & Ed

Kay Rocks the Orting Trail

Kay is having a great end of summer.  Today we went for an hour bike ride on the Orting Trail, a converted rails to trails bike and multipurpose trail, and she even impressed herself.  She rode hard the whole hour, felt great doing it, and has continued to be an energizer bunny while Brett and I played couch potato and watched the whole Seahawk's domination of the Cowboys today.

For at least a couple of weeks Kay has been really about back to normal with her energy levels.  She had been really concerned that this last course of surgery -->  Intraperitoneal + IV chemotherapy --> Whole pelvis radiation therapy that lasted from Jan through the end of July of this year was going to be something she survived but was never really the same.  Her energy levels and strength were just so beaten down that she questioned her ability to fully recover.  She and we can put those doubts to rest.  Kay is herself again.

That is super good news and we plan to take full advantage with lots of fun planned for the rest of 2012, starting with a 2+ week east coast vacation in late Sept --> Oct birding at Cape May, NJ and then touring dead presidents estates and the Shenandoah Valley and other regional attractions.

Thanks to all for all of the support we have received, and I'll keep posts coming once in a while for updates. For now, hooray, and hopes that I can keep up with Kay in her real self mode.

Summer is Great, So is Kay

Now in the second post-radiation therapy week at the Puyallup Pullen household life is going great.  Kay seems to have regained a lot of her energy and a little of her hair, and we have been taking advantage of the situation.  Last weekend I took Friday off and we had a "staycation."  Friday Kay and I took a 6 mile hike out of Sunrise on Mt. Rainier, and though appropriately tired Kay did great.  Saturday we joined church friends on the White's sailboat for a beautiful afternoon and evening sail out of Commencement Bay.  Sunday we visited the kids in Seattle for a late lunch, then Jean and Kay's girl friends put on a surprise "congratulations- treatment is finally done" party at Jeans condo in Seattle that they all loved.

This week Mary, Kay's sister and our niece Caroline are visiting from So. Cal. arriving this afternoon.  We're looking forward to a great week and more fun yet.  A week later we leave for a week visiting family in Maine.  I'm trying to fit a little work in between the fun, and  so far so good.

Hope all of you are having a great summer.

Ed

Done Treatment

2012 so far has been a year of fighting cancer of Kay.  First the surgery in January, then the course of both IV and intraperioneal chemotherapy, and finally 28 daily radiation therapy sessions. The last trip to the radiation therapy office was Friday, and Kay did a little dance there to celebrate the last session. Not kidding, she did dance. It's done now, let the remission begin.

Next week will be Kay's first week in recent memory without some sort of medical care.  Kay and all of us are praying for a long time until any major treatment is needed, and Kay really needs a long remission. This course of therapy has been the biggest trial so far, and as usual Kay has been one incredibly strong woman, but a nice long, make that very very long remission is what she needs.

We have lots of fun planned for the rest of the year and hope all of you have been having and continue to have a great summer.  Keep Kay in your prayers as we get initial test results after this therapy over the next few weeks, and let's all hope for a nice long interlude with no sign of the cancer.

Thanks for all of your support.

Special Kay

Today has been a good day.  That's news because some of the last few days have been less than good.  Kay is finally through with her third cycle of chemotherapy, and is facing a 5 1/2 week course of daily whole-pelvis radiation therapy.  We are now almost 3 1/2 years into her fight against this ovarian cancer and Kay is tired.  This last course, getting intra-peritoneal chemo has been especially tedious.  The IP port has caused pain with sitting, standing, eating, and nearly everything daily. Kay is feeling unattractive (despite my every attempt to convince her otherwise ;.) and facing radiation is scary.

Kay met with Dr. Elizabeth Swisher, her Seattle Cancer Care Alliance GYN Oncologist, today and "Liz" reminded Kay that she is special.  Not just a special case, but special.  Totally unexpectedly at her major surgery in Jan. Kay had no cancer inside her abdominal cavity, negative pathology on her lymph nodes, and only cancer in the cervix area.  She has come through this third course of chemo without major complications, and remains strong and healthy.  The hope, dare I say expectation? is that Kay will get a long term remission, and potentially a cure after this surgery-chemo-radiation assault on the cancer.  This was more than we could have hoped for prior to her surgery, and so Kay is in a special situation, a possible "save" after a recurrence following her initial chemotherapy remission.

The timing for this visit could not have been better.  God seems to smile on us just when we need it the most, today using Dr. Swisher as the smiling face.  Kay's doctors have all told her that the radiation should be less difficult than any of her prior chemo courses, and that she should not even have fatigue until the second or third week.  Fatigue side effects should resolve within weeks after the radiation.  Still the fear of long-term problems remains, and Kay is frightened.  Keep her in your prayers.  Pray for patience with therapy, for minor side effects during treatment and no long term complications.  Pray for a long, long, long time without cancer to follow. You can even throw in a prayer for sunshine if you have extra time.

Thanks to all or you for your prayers, and to many friends for all you have done to make our lives easier during this time.  Enjoy the summer. We hope to fill the late summer, fall and beyond with fun and joy.  Now to get to there.

Ed

Past Due Update

It’s been a long time since I’ve posted to this family blog. Kay and I have been trying really hard to feel closer to normal, and part of that has been avoiding talking so much about Kay’s cancer. We know people care about us, need to be kept up to date, and yet we have had a need to continue to try to enjoy the rest of our existence. Kay has cancer and we are not trying to deny or hide that, we just also need to have the rest of our lives, and we appreciate the chance to just be normal and live our lives.

That said here is the update. Kay is back on chemo, and yesterday started the fourth of six cycles of her third course of chemotherapy. We were disappointed that the remission after her second course was pretty brief, and the process of defining just what cancer remained was an emotional roller coaster. The end of the evaluation was both good and bad. The bad news was that there seemed to be a focus of cancer in the area of Kay’s cervix which was not able to be removed at her initial surgery. There also seemed to be an enlarged lymph node in the area behind the abdominal cavity called the retroperitoneum. In Feb. Kay underwent a robotic surgery by Dr. Swisher at UW where they removed her cervix as well as the lymph node. The surgery went great, and the really good news was that they found no cancer in the abdominal cavity, washings showed no cancer cells, and the lymph node was not cancer. The really bad news was that the cancer in the cervix extended to the surgical margins, so the hope for a surgical cure was dashed. Repeat CT scan confirmed that the correct lymph node was removed, and so Kay decided to be aggressive and undergo dual chemotherapy followed by radiation to the vaginal cuff area to try to completely eliminate any remaining cancer. The word “cure” was even mentioned, although we are trying to keep our expectations realistic.

Kay has completed three consecutive 3-week cycles of chemo where she gets both IV chemo and intraperitoneal (IP) chemo. The IP infusions are more difficult, where a large volume of chemo is infused through an IP port filling Kay’s belly with the chemo and fluid. The problems with this is that Kay has a lot of pain and feeling of fullness for about a week after the infusion. Overall it has been a much more debilitating treatment for Kay than either of the first two courses. Fatigue, abdominal pain and nausea have been problems, but each cycle the doctors, nurses and Kay have refined the process slightly and it has been an improvement.

Brett has been living at home since graduation from Seattle University in December, and we are so grateful for our fabulous children. Jean came home and was a huge help after Kay’s initial surgery, and Brett has been the big helper this course. Our friends have also been terrific support, with special kudos going to Terry Asplund who has been Kay’s companion at several of her chemo sessions while I’ve continued to work.

We are learning that Kay feels well enough to be more active by the middle of her cycle, and last week we got away to Palm Springs for a nice break. It was great to have time together in the sunshine, and we had a great trip.

Kay’s CA-125 levels have been coming down nicely, and we remain hopeful that after the 6 cycles and the following radiation therapy all of the cancer will be gone. It is possible that it was only the area of cancer in the cervix that was not eradicated by each chemo cycle, and that between this course of chemo, the surgery and the radiation the last stubborn cancer cells will be killed.

We know that you all have kept us in your prayers, and appreciate all of the support. So far though this course has been emotionally and physically more difficult for Kay, she has had no serious complications and the results are promising. Keep up the prayers and I’ll try to be better about posting updates.

Headed Home Today

Doctors just made rounds. Memories of being a medical student and intern again. Good news though. Kay, after a tough night with nausea post op, is doing fine and is going to be discharged about noon today. Hooray!

Surgical Results Promising

When we entered the preoperative ward today we looked up and saw that Kay's stall was stall "K", and took that as a very good omen. It may have been as Dr. Swisher just came out to talk with Jean, Brett and me and she gave us very good news. Kay had a 2-3 hour robotic surgery and in Dr. Swisher's words everything went just like we had been hoping. On examining Kay's abdominal cavity there was no visible cancer at all, and no adhesions or scarring to make the surgery difficult. They removed the cervix easily, and were able to locate the lymph node noted on the CT scans and remove that also, even though it was lying right on top of the inferior vena cava (the big vein returning all the blood from the lower body to the heart) they removed it without bleeding or complications.

The plan was to place an intraperitoneal port if there was no remaining visible disease, and so they did that too. This port will be used to give Kay chemotherapy directly into the peritoneal cavity in hopes of killing off any microscopic disease that remains more effectively than they can with intravenous chemotherapy.

We will be seeing Dr. Swisher again in 2 weeks and making sure Kay is healing well, and if so begin a course of chemo, likely Taxotere IV on day 1, carboplatinin on day 2 of each 3 week cycle for a total of 6 cycles. Taxotere is similar to Taxol, but may cause less progression of Kay's peripheral neuropathy. Unfortunately it will be back to wigs and caps again as she will lose her hair in all likelihood.

We are very thankful that the findings at surgery and the surgery itself were so positive, and are now praying for an uneventful recovery and a long remission from the upcoming chemotherapy. Thanks for all of your prayers. If the night goes well Kay will be coming home tomorrow.

Love to all.

Ed

Beating the Ice Storm

Kay and I decided to come to Seattle early, and are safely here and checked into the Collegiana Hospitality House, a UW hospital place for patients and families. Dorm style but comfortable with easy walk to the hospital and a shuttle. We were anxious about weather tomorrow making a nervous drive up in the morning. Back in Puyallup our yard looks like a tornado hit, with limbs and trees down everywhere. Planning to go to a sports bar to watch the UW-Cal basketball game soon.

Check in time tomorrow at the hospital is 9:45 AM so I'm expecting surgery late morning or early afternoon. I'll post then as soon as I have any news. Thanks for all the prayers.

Ed

Back On the Offensive

2011 was a very good year for Kay and the Pullen family. Kay finished her last course of chemotherapy about March, and took a few months more of the PARP inhibitor, but has mostly felt great and we have taken lots of vacation, played hard, and had lots of fun. Starting about September it was clear that Kay's CA-125 was creeping up steadily, and so we stopped the PARP inhibitor treatments. After consultation with Kay's oncologist here in Puyallup Rob McCroskey as well as Dr. Swisher at the Seattle Cancer Care Alliance we all agreed that taking a 3 month break from checking lab tests and going to doctor's appointments was the approach to take. We planned to wait until Kay either felt sick or had evidence of cancer recurrence to resume treatments.

We made the most of this break, and visited Belize and Guatemala. To visit Tikal was a bucket list item for Kay. We visited California for Keith and Ken's 60th birthday, and went to Mexico enjoying the break.

Our children continue to do exceptionally well. Jean is at Ernest and Young in Seattle, and Brett who has finished his studies at Seattle University has embarked on a career as an internet entrepreneur starting Colmar Enterprises, a company of web assets where he is working hard and having success at developing.

We were really pleased and surprised that after 3 months in November Kay's CA-125 had not increased very much, and although a potentially worrisome lymph node showed up on a CT scan everyone was pleased. We planned to wait another three months and check again.

Our plans changed when Kay started to have symptoms that led to discovering that the cancer had recurred in her cervix. You may recall that at the time of her original surgery the surgeon was not able to remove the cervix because of too much cancer in the area. It looks like some remnant of that cancer has started to progress, and is lurking in Kay's cervix. This was confirmed with an ultrasound and an MRI.

Since this was discovered we've been agressively looking at Kay's options for treatment. We've decided to have Dr. Swisher, the SSCA GYN oncologist, do a robotic laparoscopic surgery to remove the cervix to manage the locally symptomatic disease, see if she can also remove the retroperitoneal lymph node, and explore the abdominal cavity to assess how much cancer is apparent.

The date for this is set for Jan 20, so keep Kay in your prayers that day. The surgery should be "minimally invasive" and we hope for an overnight hospital stay and to go home the next day or in 2 days maximum. Kay has a track record of great recoveries, so I'm optimistic this will be the case.

If at the time of surgery there is very little residual cancer found the plan is to go through an agressive course of chemo, similar to the first course except probably using intraperitoneal carboplatinin instead of IV infusion with this drug. This will involve an IV infusion of Taxotere on one day, a day in the hospital the next to get the intraperitoneal infusion, and to repeat this every 3 weeks for 6 cycles. We anticipate the same hair loss as the first time which Kay is really dreading, but hope for a long remission when this is completed.

If at the time of surgery it appears that there is a considerable amount of tumor apparent then the plan is to go on a less toxic regimen of therapy with weekly Taxol and possibly adjuvant Aromatase Kinase Inhibitor treatment as a part of a clinical trial at the SSCA. The logic behind having two options depending on the findings at surgery is that if there is little tumor apparent agressive therapy may give a long remission, whereas if there is a lot of tumor apparent the chances of a long remission are slight, and less toxic treatment is a better option.

Kay wants everyone to know that the time off treatment has been a real blessing, and to thank everyone for their support. Whatever is found at the time of surgery Kay is going to continue to fight hard, live every day fully, and need all of your prayers. We both want to thank everyone for their support and wish you all a very happy New Year.