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.

Mom's Birthday

Today would have been Mom's birthday. She would have been 80 today, and we miss her. I talked to Dad and Bill as well as Morgan today and all is well back in Maine. Dad visited Mom's grave today and brought flowers. I'm so blessed that Bill and his whole family as well as the Pullens and Axtells are so supportive. Dad is going to Bill and Carol's for dinner tonight.

We are having a good summer. Kay continues to feel great, and though her CA-125 is creeping up she continues on just the PARP inhibitor and had a recent CT scan showing on demonstrable cancer back. We pray for more time off chemo to enjoy the summer and hopefully well beyond.

Summer is good, lots of weddings, parties, time together for Kay and me. Kay visited Fay last weekend and had a great visit. I had some time to be alone which was good too.

We are just about finished putting the house back in order after the flood and that feels really good.

Just trying not to fall completely out of touch.

Ed

His Friends Call him Arch

His friends call him the Arch

Last night Kay and I went to the Tacoma Dome to see Arch Bishop Desmond Tutu speak, and were awed by his words. First let me set the stage. The show started with lots of acts by local performers, some inspirational, some less so, but all building a sense of excitement and expectation. Highlights were the Washington High School Step team and Quest Crew, the winners of Americas Best Dance Crew TV show challenge. The under-program speaker was Craig Kielburger, an international youth advocate who gave an inspired talk about how he came to found Free the Children, his organization that has built 650 schools and tons of other projects since he started it with 11 other 12 year olds after reading a newspaper article about a 12 year old in Afghanistan who was murdered for his stance for children’s rights. He asked Archbishop Tutu how he should address him, and was told, “My friends just call me “Arch.”

Archbishop Tutu’s talk, appropriately was more like a sermon than a speech. He delivered it with humor, humility and incredible power. His premise was that God created all of earth without any help from man, but since man came to earth he has worked through humans to make things happen. He gave examples of Moses and the Virgin Mary as two people he asked for help who said, “Yes.”

He gave examples of seemingly small actions, like Rosa Parks, “Sitting in a bus and refusing to move,” as actions by humans to further God’s plans. He called on all of us to listen for God’s call, and to say yes. As Kielburger said about a conversation with Tutu, after Kielburger told Archbishop Tutu that he had stopped reading the paper to avoid reading about all the terror and hate in the world, Tutu admonished him as, “College boy” and suggested he see all these as opportunities from God for human intervention for positive change.

After each vignette the Archbishop described, Moses, Mary and many current stories, he curled his hands, smiled impishly, and whispered “yes” to the joy he felt about humans answering yes to God’s call to action.

I hope to keep my eyes and ears open for opportunities to answer yes to God’s calls even more after last night.

Changing subjects, on the home front Kay continues to do well. Her CA-125 remains below 10, and the PARP inhibitor therapy continues to go uneventfully. She is taking next week as a brief holiday off the treatments and we are going to New York City for fun together. You may recall that Kay and I had our courtship largely in NYC and at West Point, NY, and have lots of fond memories to enjoy there.

Jean is doing great at Ernest and Young, and Brett has graduation from Seattle University June 10^th, so we have a busy month ahead. My Dad is visiting for Brett’s graduation as is Kay’s brother Keith.