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!

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 . . .

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!

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!!!