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!

Home again!

Great day!--sunshine, warm weather, and we're home again! Phil drove from Sandy to Provo; I drove from Provo to Price; and Phil drove the rest of the way home! What a hunk!

Some of you have asked how chemo is affecting Phil.

1) Touching cold objects (like anything in the frig, the car door handle at 2:00 a.m. on his way to work, etc.) gives Phil a "10,000 volt shock" (Phil's words). I bought him several kinds of gloves at Cabela's yesterday, so if you see Phil in gloves, you'll know why! And after this cycle (cycle 2) Phil started getting the same sensation in his throat when drinking something cold--so now we make drinks warm, even water.

2) About day 3 Phil starts to feel pretty sick. Antiemetics help, but he still feels a gag reflex and bloating which translates to no appetite--he's actually afraid of eating because he doesn't want to get any sicker. During cycle 1 that feeling lasted from day 3 through day 5, and this cycle, so far, has been about the same. Some of the chemo drugs cause constipation and some cause diarrhea, so that goes back and forth, too. Go figure!

3) Tingling in Phil's fingers and toes has increased, and now he's having some numbness in his feet. This neuropathy will diminish somewhat as the cycle continues, we're told, but by the time he feels any improvement it will be time for another cycle. Eventually the neuropathy will be irreversible. That's why the Oxaliplatin will be withdrawn after cycle 6.

4) The new chemo drug introduced this week, Bevicizumab (Avastin), causes hypertension, which Phil already struggles with. So Dr. Weis prescribed potassium and Lasix, in addition to Phil's regular high blood pressure meds (Hyzaar and Norvasc). If I understand right, the potassium helps replenish depleted minerals and the Lasix helps prevent edema. However, the potassium has to be taken with food and Phil has to stay upright for 30 minutes (for why I don't know, but intend to find out). Since Phil hasn't been able to eat and has been mostly sleeping, he couldn't take the potassium. When the home health nurse came to disconnect his pump yesterday she was concerned because Phil's BP was high (190/80). Hopefully taking the potassium and Lasix today has helped.

5) Phil is always tired--some days more than others. Days 2 and 3 are spent sleeping and resting, which hopefully helps Phil bounce back faster. But like Dr. Weis said, "About the time you start feeling better, we zap you again." We're extremely grateful to Shon for giving Phil a key to his house, so he can slip away from work and rest while he's in Moab.

Phil is always anxious about missing work. When we're away he spends most of his time on the computer working, even getting up at 4:00 a.m. to do live news broadcasts for the radio stations. But some days are just impossible due to sickness and fatigue.

Thanks to all of you for your thoughts, prayers, and support!

When life gives you lemons . . .

Phil is my hero! Yesterday he cheerfully endured a grueling seven straight hours of chemo. Before meds are mixed, Phil's blood is tested to be sure he can tolerate treatment. Then his chemical regimen (or recipe, as it's called) is mixed and infusions begin in this order: 1. pre-meds (saline, calcium and magnesium, and an anti-emetic to prevent nausea); 2. oxaliplatin (derived from platinum--with a price to prove it), 3. leukovorin (folic acid which binds 5FU to cancer cells); and 4. Bevicizumab (or Avastin). Then he's disconnected from the infusion lab pump and receives: 5. a five-minute bolus, or "push," of flourourasil (commonly known as 5FU) by syringe, and 6. then connected to a portable pump affectionately referred to as his "little friend," which pumps 5FU over the next 46 hours. This pump resembles a ball about the size of a large grapefruit and reduces in size as it infuses.

Since we were in the infusion lab from noon till just after 7:00 p.m., 46 hours later falls at 5:00 p.m. on Wednesday. That's when the home health nurse will visit us to disconnect Phil's pump and we're free for another 11 days till cycle 3 begins. Right now Phil is scheduled for 12 cycles (2 down--10 to go). But as Dr. Weis wrote in his diagnosis, "this treatment will likely continue indefinitely."

As a neophyte who is fast becoming a frequent flyer of the infusion lab, Phil has learned to navigate while attached to his infusion pump/IV pole. All those fluids necessitate several trips to the rest room and on one such excursion, Phil escaped to the infusion lab across the hall to share some exciting "news" with Dov, who was also being infused. Earlier we had received a copy of the report Dr. Weis dictated regarding our previous visit which read, "Mr. Philip Mueller is a 67-year-old woman . . ." A what? Phil and Dov had some good laughs over that!

I told Phil, "Atleast it doesn't say, 'Upon examination . . .' !"

By the way, Phil's white blood count was lower this week (but fortunately not too low for infusion). Please be aware that Phil's immunity to germs, bacteria, and viruses is also compromised. Research proves that frequent hand washing is the best way to avoid spreadiing disease (that's the Extension Agent in me speaking). Avoid hand-shaking. Cough and sneeze into your elbow. And if you're not feeling 100%, please use the "six-foot rule." Keep a distance of six-feet between you and Phil, and know that we love you for your thoughtfulness and consideration!

Yesterday was an amazing day . . .

We arrived at Huntsman at 8:30 a.m. yesterday for Phil's first chemo treatment. Each round of treatment is counted as "Cycle 1, Day 1; Cycle 1, Day 2," and so on to day 14. Then it starts all over again with, "Cycle 2, Day 1; Cycle 2, Day 2," and so on. Phil is scheduled for 12 cycles, which doesn't sound like much till you realize that's 24 weeks, or nearly six months.

It didn't take long to feel acclimated to the Infusion Center at Huntsman Cancer Institute. Although we both felt anxious--like plunging into an abyss, Phil's nurse, Debbie, was quick to make us laugh and feel right at home. Her lightheartedness was infectious as she went from hooking Phil up to his chemo, to offering donuts, cookies and an introduction to the donor of these goodies--Dov (pronounced with a long "o" as in, "He dove into the water"). Dov Siporin has had Stage IV Colon Cancer for three years. His sidekick, Suzanne Harsha-Arevalo, was diagnosed the same time as Dov, and has also survived three years with Stage IV Colon Cancer. Suzanne announced that she was in complete remission. This is remarkable considering Suzanne had 12 lesions on her liver and her cancer was also inoperable.

Dov and Suzanne did more for us than any doctor--they exemplified what it means to fight! Dov wore a black t-shirt with "F*** Cancer" printed on the front, and "Inoperable but Undefeated" on the back. I'm guessing Dov is in his 30s. Always smiling, Dov is the picture of health--it is impossible to believe he has a stage 4 cancer. Dov did a stand-up comedy routine to rival any professional and had everyone in our infusionj room laughing so hard.

Suzanne is intense with shortly cropped hair (probably courtesy of chemo) under a black cap. Her oncologist (who is also Dov's and Phil's oncologist) wanted Suzanne to do three more months of chemo but she refused. You can't help but respect and admire her courage. Both Dov and Suzanne are devoted to inspiring others and they share their stories with frankness and humor.

In the waiting room I also met Kristen, her husband Josh, and their beautiful blond baby girl. I learned that they have three sons at home and that Josh was diagnosed with a brain tumor about a year ago. There is a long scar almost circling Josh's head, like a triumphant halo. Kristen shares their story and refers me to her blogs: my-3-sons-kmb.blogspot.com and dadnamedjosh.blogspot.com I encourage you to visit them--each is very inspiring!

I also met Max, a positive and upbeat survivor who I learn is participating in a clinical trial hoping to find better treatments for his type of cancer--melonoma. He has a couple of scars on his cheek and his neck that add to his rugged good looks! He's all about climbing mountains so his blog is aptly named: mountaintherapy.blogspot.com Max hasn't let cancer own him--his life is so inspiring!

So you can see that we had an amazing day. As Dov pointed out, you learn about everyone else and tell yourself, "At least I don't have it as bad as you." And he's right. It's amazing that no matter how bad you think your own situation is, you wouldn't trade with anyone else.

I've been pretty careful to keep this blog factual and all about Phil. But in keeping it "real," I realize that I've ignored the emotional side of cancer. Although Phil is a brick, I've avoided talking about feelings because they're just too raw and real to reiterate. But bottling them up hasn't made them go away--instead they intrude at the worst possible moments. Monday I stepped out of the infusion room and noticed Dov visiting with a group of folks in the waiting room so I stopped to listen. Soon I was sharing Phil's story and the tears broke through. As I began to apologize, I found myself encircled by tender and compassionate listeners whose hugs and sweet sentiments were a huge comfort!

Phil was feeling the love, too, when Dov and Suzanne paid him a special visit bringing cheer, inspiration, and most of all HOPE! We really needed that extra "infusion" of HOPE! We can mainline that stuff any day!!! We can't believe how much love there is at the Huntsman Cancer Center.

Although Phil and I took plenty to read, we read very little. It was amazing how fast seven hours sped by while visitng with new friends in the infusion center--Bob and Linda, Sterling and Maria, Ro, Ella, and others.

Soon Phil was hooked up to his portable pump which would continue to infuse over the next 46 hours. With less than a day left on his portable pump (a small ball he carries in a shoulder bag) he's feeling NO side effects, except sensitivity to cold. He gets disconnected Wednesday at 1:15 p.m. and we're going home!

We feel blessed in a multiplicity of ways--good family, good friends, good medicine, and . . . HOPE!!!

We have a plan . . .

For the first time in 43 days, we know what we're doing and when we're doing it!

Phil begins chemotherapy on Monday, March 14, which gives his port-a-cath more time to heal. And that means we get to go home for a few days! The first infusion will be at Huntsman next Monday, March 14, and if he tolerates it well, Phil can receive other infusions at Moab Regional Hospital. (Each chemo infusion will take about 5-6 hours.)

Then two weeks after the first infusion, Phil meets with Dr. Weis again to report side effects, and then he'll receive his second infusion while we're still at Huntsman. After that Phil will meet with Dr. Weis before every-other infusion, so every four weeks. If all goes well, infusions when he's not meeting with Dr. Weis can be scheduled at Moab Regional. Every 14 days, on the weeks opposite chemo, Phil will have a total of five iron infusions which he plans to schedule at Moab Regional. (Each iron infusion will take about 2 hours.)

We have our fingers crossed that this schedule works so we're not making as many trips to Salt Lake. And if you feel inclined, please pray that the tumors will shrink and that Phil will tolerate the chemo well with a minimum of side effects.

Phil is still perfectly confident that he can beat this cancer!

The eye of the storm . . .

Yesterday felt like passing through the eye of the storm . . . everything before yesterday was diagnostic--everything after today is treatment.

This morning Phil checked into Huntsman at 6:00 a.m. for outpatient surgery. Under light anesthesia an area from his neck to lower chest was deadened and two incisions were made, one for the camera and one to introduce the port-a-cath, which was placed just beneath the skin below the left clavicle.

While Phil was in surgery, Dr. Weis called with results from the Tumor Board. The liver is inoperable. The idea of growing more liver was not an option. Dr. Weis will proceed with chemo immediately and Phil might possibly have his first infusion tomorrow. We'll discuss this more at our appointment tomorrow.

Phil did great in surgery and we were out of Huntsman by 11:00 a.m. We're now back at my brother's beautiful home where we're treated like royalty. Phil is taking a nap, under protest! He really wanted to get out his laptop and work, but sometimes a good wife has to put her foot down and this was one of those times!

We feel blessed in so many ways--we have our faith, each other, caring family and friends, modern medicine and advancements in chemotherapy treatments, and so much more.

A quiet day . . .

On January 26 Phil learned he had cancer somewhere in his body. Today, 41 days later, we have a diagnosis, but we are still waiting to find out what happens next.

Last Wednesday, March 2, Phil had a PET scan which required an IV and injection of a radioactive sugar. The whole process took about two hours. Two days later we met with a surgical oncologist, Dr. Courtney Skaife who gave us the results. We had been warned that Dr. Skaife would be very direct. She was, and her candor was much appreciated. Dr. Skaife pulled up Phil's PET scan on a computer monitor and described what we were seeing.

A PET (positive emission tomography) scan captures full color images of the body in three-dimension, slice by slice. Cool areas appear blue or black, while warmer areas are yellow, orange and red. Heat is generated when rapidly reproducing cancer cells uptake the radioactive sugar creating "hot spots" which appear bright red.

We were grateful to learn that Phil's cancer is confined to his colon and his liver and adjoining lymph nodes. These lymph nodes were expected to be involved, since they're the vehicle that transported the cancer from the colon to the liver. However we were disheartened to learn that instead of four lesions in Phil's liver, as identified in his CT scan, in fact, he has eight.

We also learned that due to a congenital defect, Phil is missing most of the left lobe of his liver so surgery may not be an option. The liver is a remarkable organ because it can regenerate, but only if there's enough liver remaining to reproduce itself. In Phil's case, there's not enough. However, Dr. Skaif had an innovative idea to cauterize a major blood vessel going into the right lobe where it branches right and left, to give the left lobe more blood, in hopes that it will grow. She plans to discuss that option at tumor board tomorrow.

Also tomorrow, Phil has surgery to place a port-a-cath in his chest so he can begin receiving chemotherapy. The port-a-cath provides a portal to a major vein in the chest and eliminates the possibility of damaging surface veins and tissues. And because it's under the skin, there's less possibility of infection.

Then on Wednesday, we have a 9:40 a.m. appointment with Phil's medical oncologist to find out what the tumor board recommends.

I know this sounds pretty dismal . . . and it is . . . but we still have some good laughs! Like the other day when Phil found out that two glasses of prune juice worked twice as good as one! After a couple of unexpected trips to the bathroom that night, we couldn't stop laughing. (The kids will relate to this--it was the same uncontrollable laughter they've witnessed when their dad plays Grand Theft Auto or watches The Pink Panther.) And he was still laughing in his sleep!