At University Hospital Feb. 2011

At University Hospital Feb. 2011
February 11, 2011 at University of Utah Hospital

Friday, July 8, 2011

High 5 to our friend, Dov Siporin

Go to this site to view a brief news story about our amazing friend, Dov Siporin. Dov has battled stage 4 colon cancer for nearly 4 years while selflessly lifting and inspiring hundreds, despite his own suffering!

http://www.ksl.com/?nid=148&sid=16279383

This recognition is truly well-deserved!

Sunday, June 26, 2011

Finally . . . good news!

Here's what has happened since my last post:

May 23: We were anxious for Phil to have his sixth chemo treatment so he could get a PET scan and we would know if the tumors were shrinking, staying the same, or growing unchecked. But Phil's absolute neutrophil count (ANC) was way down, so chemo and the PET scan would have to wait. His body needed time to rebuild from the damage caused because chemo kills good and bad cells alike.

With Phil's immunities dangerously low, he fell prey to a series of troubling infections which became a major challenge.

May 19: Phil came home from work feeling ill. That evening he spiked a fever that resulted in a trip to the ER. After a series of inconclusive tests, Phil was treated with a broad-spectrum oral antibiotic and he responded well.

May 23: Phil developed a number of cold sores on his lower lip and chin which a provider at the clinic described as "typical of AIDS patients." Suppressed immunities result in every infection being worse than average. This time Phil's virus was treated with a topical ointment.

May 27: Phil complained of pain in his elbow, which had become red, hot, and swollen. Another trip to the ER resulted in 7 IV antibiotic treatments every 12 hours over the next 4 days. We were so grateful to Becky in the ER, and Liz and Mark who came for the weekend--they really kept Phil laughing and I'm sure their visits were as healing as the drugs, if not more so. Special thanks to our awesome sons-in-law, Brian Kirby and Brandon Weilenmann, for taking charge of the kids while their wives cheered their Dad and me. What great children we have!

May 30: Blood work showed Phil's immunities had improved significantly. But his oncologist wisely decided Phil needed more time to recover from so many infections.

June 7: With Phil's ANC nearly normal, he finally received his sixth treatment at Moab Regional Hospital. That was a rough chemo week, but the second week was better and we were able to enjoy our Cook Family Reunion on Father's Day weekend. This was a celebration for my dad's 90th birthday and my mom's 84th birthday--Happy Birthday, Mom and Dad!

And Happy Birthday, Phil, this Friday, July 1!

At the reunion, Phil enjoyed a great nap on our super-plush, queen-sized air mattress with all our tent windows rolled open. Later we had a great dinner and program, but when the sun went down, it got downright chilly! One of Phil's chemo drugs makes him extremely sensitive to cold, especially his mucous membranes which swell and make it difficult for him to breathe. So around 10:30 we abandoned our tent and went home to sleep, but we were back bright and early so Phil could mix up pancakes for everyone, which my brother Terry flipped on the griddle! Being the oldest of eight, and the "designated reunion planner," I stressed big-time because between Phil's treatments and my job, I didn't have the time nor focus to do it right, but everything went off without a hitch. We had a great weekend and Phil even felt good enough to help clean up.

HERE’S THE GOOD NEWS!

June 13 (Lucky 13): With six treatments behind us, Phil finally got a PET scan and the results showed: "No other new lesions are identified." . . . "The previously seen enhancing mass lesion involving the transverse colon has significantly decreased in size.” Bottom line--all 9 tumors have shown a “favorable response to treatment." SO REALLY GOOD NEWS!

Because cancer cells eventually adapt to chemo drugs and stop responding, one of the drugs (oxaliplatin) was withdrawn for now. This drug packs an initial punch, so dropping it early makes it possible to trick the cancer cells and bring it back later for another powerful punch (we hope). This is the drug that causes irreversible, peripheral nerve damage (numbness and tingling in extremities), and has made Phil's feet feel like “wooden blocks.” Also, since the drug will take some time to clear his system, the full extent of damage is not yet known.

June 21: Phil received his seventh chemo infusion, which was shortened by 1.5 hours without the oxaliplatin drip, and he has experienced less nausea. However, the fatigue factor seems to be ramping up with each new treatment. But Phil never complains--no matter what the side effects, he just smiles and says, “It goes with the territory!” He leaves for work at 2:00 a.m., no matter how sick or how tired he feels. Phil says work takes his mind off cancer, so I’m trying to quit encouraging him to “take it easy.” :~)

As members of The Church of Jesus Christ of Latter-day Saints, we're thankful for our faith in God and the Plan of Salvation which makes it possible for families to be together forever. Life does not end when we leave this earth. Families sealed together in His holy temples, who live up to the covenants made therein, will be together forever. This we know! These truths are a great comfort to us. We are His children and He loves us, every one. We are not alone in our trials. His Spirit comforts and guides us if we prayerfully place our trust in Him.

Proverbs 3: 5-6 "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths."

Sunday, May 15, 2011

Best of time and worst of times

The best of times: staying with Liz and girls in Park City for Phil's most recent chemo at Huntsman (cycle 5), and having Adam and his daughter Haileigh, and Mark come visit us there.

Then at Huntsman, meeting amazing people: Louise and her daughter, Karen and her husband, Val and his daughter Jenny, Bonnie and Gary from Monticello, Lynn and her daughter Angie, Dov and his wife Tara, and his mom, Ona. When you spend 7 hours in the infusion lab, you meet some really amazing people!

Monday's infusion wasn't too bad. Tuesday, on the portable pump, Phil actually drove to Salt Lake to have lunch with John. Wednesday we left for home early enough so we could arrive at Moab Regional Hospital so Phil could get disconnected from his portable pump by 2:00 p.m.

The worst of times: But before we could leave Moab, Phil got sick and things went down hill from there. Sick or not, Phil woke up at 2:00 a.m. and went to work, calling later that morning to say he couldn't keep anything down. He wouldn't come home, though, because he had a live-remote broadcast from 3:30 to 5:30 p.m. that afternoon. After a nap at Shon's, Phil got the job done. Friday wasn't much better. Phil worked long hours, all the time consuming nothing more than a couple of cans of Ensure.

For at least two days I was pretty distraught (interpretation: beside myself with worry). Then Adam drove down on Saturday and his visit made a huge difference to his Dad and me. Even though he was here less than 24 hours, it was a great comfort! Adam and Becky came to Sacrament meeting with us, then Adam drove the 300+ miles back home.

Phil lost 5 pounds last week; he still has very little energy and is exhausted all the time. But today was a beautiful day and he felt much better. YEAH!

By the way, for those of you who may not know--our family is our life! We are so grateful for the love and concern of our children: John, Jeff, Adam, Mark, Liz, & Becky. Our sons-& daughters-in-law: Alison, Brandon, Brian & Dave (even though we lost our daughter Stacey 9 years ago, we still claim Dave!). And our 23 grandchildren: Connor, Xander, Tristan, Zoe, Haileigh, Katelyn, Anna, Ellie, Josh, Keira, Kami, Ethan, Nathan, Emma, Emily, Dillon, Mary, Brandon, Jacob, Jared, Kylie, Brianne and Angie. All our children are now living in Utah except for Jeff, who lives in New Hampshire. But Jeff will visit this summer, to train and participate in the Wasatch 100. We're excited to get everyone together then.

WE'RE VERY GRATEFUL FOR OUR FOREVER FAMILY!

Friday, April 29, 2011

Getting chemo in Moab

Phil is the most optimistic person I know. Even cancer can't discourage him. But day 3 or 4 of each chemo treatment always gets him down. Phil described it as the "cumulative effect of the chemo kicking in." He just doesn't feel right and that sends him into depression--so today's been a tough one. But if you hear him on the radio, or meet him in person, you'd never know it.

Chemo was a little touch-and-go this time. Phil barely met the required White Blood Cell (WBC) count of 1500. His count was 1510. (At 1500, nurses are instructed to call the doctor.) It's not just the WBC that results in this equation. For chemo patients, their neutrophil count makes the difference. Neutrophils are immature white blood cells and their level is called an Absolute Neutrophil Count (ANC). The WBC and ANC are factored together to determine if there's enough neutrophils to mature and make up for the loss of WBCs.

Despite this near miss, Phil got his infusion on Tuesday and was disconnected from the portable pump on Thursday. Losing that encumbrance is always a celebration! Actually, this has been a stellar week! Phil has worked every day, long days, with brief naps at Shon's in the afternoon. These siestas are enough to rejuvenate him. Those of you who know Phil, know that he eats, breathes, and sleeps radio, and that has made a big difference in his ability to keep going this week--being in Moab so he can work. We SO appreciate Shon and Roseanna for opening their home and their hearts to us!

Tonight Phil is in Moab broadcasting live from 6:00 p.m. to 8:00 p.m. at the April Action Car Show. This guy knows no mercy when it comes to radio! I'm surprised there was any WBC or ANC count at all--I thought he had 100% proof radio waves flowing in his veins!

Tuesday, April 26, 2011

Cycle 4, Day 1

We're off track! Ordinarily Day 1 would have been yesterday at Huntsman. But Phil wanted to be infused in Moab at the new Moab Regional Hospital, so we're off a day.

The first step is always a blood test to check Phil's white blood cell count, among other things. If all's good, the doctor decides how much chemo Phil can tolerate and writes a prescription, which the lab fills and sends to the infusion center. Because Phil will have this treatment in Moab, the blood work was done yesterday and sent out to be read. Then Huntsman is notified and sends a prescription to the hospital in Grand Junction, CO, where the chemicals are prepared and sent to Moab. Consequently, we wait! Which doesn't bother Phil, but it's really bugging me!

I have my biannual Regional Staff Meeting in Richfield tomorrow and since I've missed all training this year, I can't really afford to miss this one. If Phil had finished his 7 hour infusion yesterday, I would feel a lot better about leaving him on a portable pump today and tomorrow. But Phil insists that I go anyway, and that he will be OK. Yikes, this is really, really hard, but I know he can do it and I have to let him.

So the chemo is on it's way to Moab and Phil will leave work and report to the infusion lab at 12:30 p.m. I'm about to leave Blanding and will see Phil briefly in Moab, on my way to Richfield! I don't like this at all, but life goes on and sometimes we have to do the responsible thing, whether we like it or not.

Thank Heaven Phil has such a strong support system in Moab. While I'm gone, Shon Walter and his family will be watching over my sweetheart till I get back. Phil and I are so thankful for these angels on earth!

More later . . .

Tuesday, April 12, 2011

Cycle 3 . . .

Cycle 3, Day 1: Yesterday, just before finishing his treatment, Phil had a bad reaction to oxaliplatin. I had walked down to University of Utah Hospital to pick up copies of Phil's records when I got a call from Phil saying, "I'm going down. I'm going down."

"Tell your nurse," I kept telling him. He said a nurse was with him.

I took off immediately, leaving the clerk standing there making our copies. It took me atleast 20 minutes to get back to Huntsman, where I found Phil heaving violently and throwing up. The nurses knew just what to do and pushed an antiemetic--Ativan--through his IV. It worked immediately.

Our nurse said, "I'm afraid he's going to be a cheap date tonight!"

While Ativan acts to stop nausea, it also causes extreme drowniness, unsteadyness, and forgetfulness. I'm not sure about the forgetfulness because there was no chance to test him (What is your name? What year is this? Who's the president?). Phil fell asleep the minute we got in the car. I could vouch for the unsteadyness, however. Phil was trembling and weak and I had to have help to get him out of the car and into bed, where he slept soundly from 6:00 p.m. on.

At 4:00 a.m. I couldn't believe it when Phil got up and did a news broadcast, then worked via computer till 8:00 a.m. before he went back to bed. Today he has enjoyed the rare luxury of resting in our palatial guest suite at Tom and Barbara's where Phil spent the day watching his favorite TV shows--anything on Fox News (with the exception of Huckabee). And Barbara made him delicious banana bread. Tom and Barb really pamper us!

Here's some highlights from yesterday:

1. Our daughter Liz flew in from South Carolina with her family and came straight to Huntsman to visit her dad. I was happy she got there after the crisis, but before I had to try and maneuver her dad to the car by myself after he refused a wheelchair!

2. Our son Adam and my sister Wendy came to visit earlier in the day. It's always good to see them while we're there.

3. We met some amazing people. Gary and Colleen of Rigby, Idaho are probably seventy-ish with an amazing sense of humor, despite Gary's rare t-cell lymphoma (diagnosed in 2007)--the only case at Huntsman. Colleen is a very petite lady who has Gary keep his admitting bracelet on so if she gets pulled over for having a self-described, lead foot, she can show the officer she has a good reason.

4. We also met Deborah of Big Sky, Montana who has a very rare brain tumor (diagnosed in 2008), one of only seven known in the world. She's also had lymphoma (cancer of the lymph) twice. Deborah is probably the most positive person I've ever met. Through a constant smile and laughing eyes, she explained that she has had 5 brain surgeries, radiation, no end of chemo, and subsequent "drain bammage!"

4. We were really excited to see old friends, Sterling, Dov, Suzanne, and Dave--all such positive folks, too! I was especially glad Dave was there when we came in. We missed getting his blog address last time: http://kastelersfight.blogspot.com/

Dave is a big scouter and is planning to take a 50 mile hike this summer with his 13 year old son. Dave explained that his colon cancer had spread beyond his liver and he now has three tumors on his spine. He said he hoped that wouldn't stop him from carrying his backpack. In all seriousness, Colleen said, "You need a jackass!" We all laughed so hard to hear this tiny little lady make that suggestion! Pretty smart, actually.

So there you have it . . . another chemo cycle in the life of the invincible Phil Mueller. Chemo might knock him down, but it can't keep him down for long!

Sunday, April 10, 2011

Thought for the day . . .

Cycle 3 begins tomorrow. Meanwhile, Phil is doing AWESOME! He looks good, feels good, and is "in it to win it!"

This thought (which I posted on FB) has been a huge inspiration to me:

"No matter how difficult something you or a loved one faces, it should not take over your life and be the center of all your interest. Challenges are growth experiences, temporary scenes to be played out on the background of a pleasant life. Don’t become so absorbed in a single event that you can’t think of anything else or care for yourself or for those who depend upon you." -- Elder Richard G. Scott

I'm thankful to be reminded that even in the midst of adversity, life is good! In fact, adversity makes life even sweeter because we gain a better appreciation of things we take for granted. There's no better wake up call than a good hardship!