Another great scan!

That pretty much sums it up. We were worried because Phil had developed intense pain in his back and was having great difficulty walking. Our wonderful friend, Dave Kasteler, who passed away four weeks ago, suffered immensely after his colon tumor infiltrated his spine. That was our fear for Phil. Gratefully, Phil's CT scan showed "no new growth!" It was a huge relief to learn that Phil's back pain wasn't a result of the cancer spreading. In fact, one tumor in his liver actually shrank a millimeter or so.

Phil at Huntsman waiting for chemo.

We never thought we'd be grateful to find out Phil's back problems flared up again, but this time we were. The pain resulted from his degenerative arthritis and scoliosis, which was diagnosed about two years ago. In fact, at that time Phil was told his spine looked like a grenade went off in it. Luckily he was able to see his specialist in Provo the day after chemo. I couldn't go because of my eye surgery, so they changed from general anesthetic and administered Phil's cortisone shots under local anesthetic so he could drive afterwards. Phil hasn't had complete relief, like last time, but he has improved so he can walk with less discomfort, and he has a follow-up appointment in one month if he needs it.

Another wonderful highlight for Phil this month was being named Moab Citizen of the Year at their Tree Lighting Ceremony on December 2. This was a great honor which touched Phil deeply. As Citizen of the Year, he also served as Grand Marshall for Moab's Electric Light Parade the next night.

This is a shot of Phil being named Citizen of the Year, with Santa (Phil's great friend, Dan Mick) on hand to help bestow the honors!

Liz, Katelyn, Anna and Ellie came to Moab to help celebrate. Later, Adam and Heather, and Brian and Becky and Josh, Keira and Kami joined us. Another of Phil's great friends, Shon Walter, arranged for us to stay at one of his condos for the weekend. If you need a place to stay in Moab that feels like a home away from home, you want to stay in one of Shon and Rosanna's beautiful cozy condos! For a peek, go to: moabcondos4rent.com

Hard to see, but this is the Hummer that Phil rode in to lead the parade. He's sitting beside his friend Beth who manages Zion's Bank, the Business of the Year. I'm inside the Hummer with our granddaughter Ellie, while four (of our 25) grandkids followed behind on their scooters all lit up!

L to R: Keira, Josh, Katelyn and Anna

It was an amazing evening and Phil is so deserving of the accolades he received!

I mentioned my eye surgery. On December 8, I was operated on to remove an epiretinal membrane which formed as a result of multiple eye injuries last year. Between July and October of 2010 I had two retinal detachments, three vitreous hemorrhages, and four surgeries which resulted in a lot of debris (dead cells, etc.) in my eye. The debris attached itself to the center of my eye and proliferated, creating scar tissue which puckered and distorted my central vision. This puckering was worsening over time so my retinal specialist, Dr. Paul S. Bernstein, at Moran Eye Center, removed the epiretinal membrane (ERM) and the inner limiting membrane (ILM) to smooth out the retina. It will take up to six months before we know how much of my vision will return, but at my one week checkup Dr. Bernstein said he was "very pleased." I have to avoid any strain on my eye for "several weeks." I'll be two weeks post-op tomorrow and each day has seen (little pun) slight improvement in the pain, swelling, dilation, dryness, and inflammation. Today is the first day I haven't felt like I had gravel in my eye--for which I'm very thankful.

Here we are, waiting for my eye surgery at Moran Eye Center. (I considered loading an after-surgery picture, but decided to spare you the gory details.)

In the midst of all this, my 84 year old mother had to be rushed to Salt Lake for an emergency gall bladder operation. Over a period of one week, Mother was recovering in University of Utah Hospital; Phil was being scanned, examined, and infused at Huntsman Cancer Institute; I was having eye surgery at Moran Eye Center; and our grandson Dillon was having a follow-up visit for a recent stay at Primary Children's Hospital. Seems like we keep that med center pretty busy!

During my surgery my sisters took our mother on a tour by wheelchair. She visited our son Adam's office (he is a Clinical Research Compliance Officer) and my sister Wendy's office (she is a Financial Aid Officer)--they both work in the hospital complex--and then across the sky bridge from the hospital to Moran Eye Center where our daughter Liz and granddaughter Ellie were waiting with Phil. Everyone was nearby when the doctor came out to announce that my surgery was a success. Evidently I missed a party!

Here I am visiting Mother at University of Utah Hospital the night before my eye surgery. Sadly, my 90 year old dad has taken a couple of falls lately, and that's a real concern. Mother's surgery was the 6th, she was released from the hospital on the 8th, and Wendy and John brought her back to Blanding on Friday, the 9th, because she was so worried about Dad. Mark brought me home three days ago, on the 18th, and I'm glad to be home. But I'm not gonna lie, between what's happening with Phil and Mom and Dad and me, I'm feeling pretty overwhelmed.

But we are grateful for a multiplicity of blessings, namely (1) that Mom appears to be recovering nicely, (2) that Phil's cancer is not spreading--and that he has had some relief for his back pain, (3) that my eye is improving, (4) that Dillon is OK, (5) that Mark is home for the holidays (and just in time to do all the heavy lifting for us and for his grandparents), (6) that we have wonderful children and grandchildren, (7) and wonderful friends like you! We thank our Heavenly Father daily for these tender mercies and tiny miracles!

MERRY CHRISTMAS, EVERYONE!

It's been a long time!

I can't believe it's been so long since my last post. I apologize to all of you who keep checking for news and then have to call, message, e-mail, text, FB, or stop me on the street for updates. Generally, it's safe to assume that "NO NEWS IS GOOD NEWS." I seem to write for therapy, so if I'm not writing, that's a good thing!

Where to begin . . .

On September 12 Phil had a CT scan which showed NO NEW GROWTH! We were elated to learn that the cancer was not growing and had not spread. It was phenomenal news, really, when you consider his original prognosis of 6 months to a year. Phil is still getting chemo every other week and his next CT scan is December 10. We'll get results on the 12th when he sees his oncologist (and I'll try to post the results more quickly this time). Meanwhile, we're trusting in the Lord and praying for this great blessing to continue.

Chemo leaves Phil very tired all the time, more so the first week, and he fought (and defeated) a bad cold over the past 2-3 weeks. But despite all that, he never misses his 2:00 a.m. wake-up call--when that alarm goes off, he's up and on his way to Moab!

Tomorrow is Thanksgiving and the entire Moab community is invited to dinner at the Grand Center--so we'll dine there amongst Phil's amazing friends. What are we most thankful for? This Thanksgiving we're thankful that despite our challenges, life goes on!

In September we took an amazing trip to Albuquerque, NM and came back by way of Winslow, AZ. I attended a professional conference in Albuquerque so we were there all week. I presented at two sessions: one session on my 4-H afterschool program and the other on how to get published in the national journal that I edit (Journal of National Extension Association of Family and Consumer Sciences). While I was working, Phil luxuriated in our gorgeous hotel room.

We had the best view and it was the week of the Albuquerque Balloon Festival. Almost every day we saw balloons float by, not that far from our wall-to-wall, floor-to-ceiling windows. We really enjoyed every minute we spent there!

One of our favorite spots on earth is Winslow, Arizona! As train enthusiasts, we love to stay at La Posada--an old train hotel which has been completely restored in period style. We checked in, dined on amazing southwest cuisine at the Turqoise Room, and sat in rocking chairs by the tracks and watched trains till well after dark. We had a room overlooking the railroad tracks and the next morning we realized we could actually see the trains while sitting in bed! Sadly, we could only stay one night this time.

Before we left, we had to have our picture taken on the corner made famous by the Eagles!

We wandered through a car show that happened to be in town and Phil found a friend he had made at the hotel. I'm always amazed that Phil finds friends wherever he goes. This fellow seemed to be in a rush when Phil first spoke to him, but before long, he was totally engaged in conversation and when we saw him the next day, he was anxious to pick up where they left off the night before!

Finally on the road, I convinced Phil to take a "shortcut" across the Navajo Reservation. I told him I had traveled that way before, with our aunt, Lucille Hunt, who is Navajo, and I was sure I could retrace our route. When we drove for some time and ended up on a dirt road, I reluctantly confessed that I hadn't recognized any landmarks for quite some time, but still thought it was a good route!

A Navajo lady drove past us as Phil hung out the window waving his arms ("Crazy bilagaana!"), then backed up her pickup and kindly guided us back to a main road. She said the road we were on turned into a mud bog and we surely would have gotten stuck. I told her she was an angel of mercy, and she was! Of course, Phil was his usual good-natured self. He so easily could have said, "I told you so." Instead, we both appreciated that we had seen new country and had quite the adventure!

There . . . doesn't that feel great to hear good news for a change?

Sending love to all our readers!

Full disclosure . . .

When Phil was first diagnosed with stage 4 colon cancer, I felt like a robot going through the motions. I woke up each morning hoping it was all a bad dream. I dressed, went to work, came home, fixed dinner for Phil, went to bed. Nothing felt real. I had no brain; I couldn't reason; I was prone to frequent meltdowns; I lost patience with platitudes. I cleaned frenetically, keeping myself too busy to think, and when everything in the house was spotless, I painted three rooms in one week. Then I moved outside and viciously hacked weeds with unparalleled vengeance till the rusty red earth was smooth and unmarred. It felt like fighting back. "Take that, you wicked cancer!"

A good friend said, "Eventually you'll find a groove and be able to function again." Thanks, Michele. I think I’ve found that groove. Our "new normal" is not what I would ever have asked for, but it seems to be working, for now, and I'm thankful for that.

Although our lives revolve around chemo, cancer does not define who we are. Life goes on and life is good. Our son Adam is getting married September 3. Our grandson Josh will have his 8th birthday this Friday and be baptized soon. My job is a comfort, although I’m on a much less demanding schedule, and I’m looking forward to giving a presentation at a national conference in September.

Phil continues to get chemo every two weeks, but somehow, he's working harder than ever despite his continually diminishing strength and appetite. Chemo may zap his energy, but it can't touch his optimism and positive outlook!

There was a little bump last month. Gayle, his infusion nurse in Moab, discovered that Phil's potassium levels had tanked so he got two hours of potassium before they could begin his five-hour chemo infusion. That was a rough week for Phil and he ended up staying at Shon’s two nights, instead of one. I don’t go with Phil when he’s in Moab so it’s a great comfort knowing Shon and Rossana are watching out for him. Thanks, guys!!!

Once a month Phil sees Dr. Weis at Huntsman and sometimes we can travel home so Phil can have chemo in Moab the next day. That way we miss less work. Last Monday Phil had chemo at Huntsman and was too sick to travel till Wednesday. But the enforced rest was good and seems to have helped his strength return much faster. This weekend has been like a second week after chemo, instead of a first week. I’m encouraging Phil to experiment with this concept of "resting more" to see if it works next time. (Wish me luck with that!)

August 12 was the American Cancer Society's Relay for Life, held on the high school football field in Moab, and Phil was heavily involved. He and Shon set up a broadcast booth and provided live, continuous coverage throughout the night. Our daughter Liz and her 5 year old daughter Anna came from Park City to support their Dad/Grandpa and that was a great joy! I set up a tent and an air mattress near the broadcast booth so Phil could rest. He seemed determined to pull an all-nighter, but sometime after midnight he crashed. Phil usually drops into bed between 6 and 8:00 p.m., depending on how late he gets home from work, so midnight was quite an accomplishment. Around 3:00 a.m. the air mattress was pretty deflated and Phil was freezing under two thin blankets. Temps in the day averaged 100+, but fell into the 60s at night, and since Phil has very little tolerance for cold (thanks to chemo), he pulled out and went to the radio station where he could warm up and catch a few zzzzzzs in his recliner. However, he was back at the Relay broadcasting live again at 5:00 a.m. What a fighter!

Of course, Relay for Life is about forming teams, raising funds, and keeping at least one team member walking around the track all night. The event always swings off with a Survivor’s Lap. As all the survivors gathered on the track, a torch was passed from survivor to survivor. Without his knowing, Phil had been selected for the great honor of leading the Survivor’s Lap carrying the torch. This came as a complete surprise. Phil fought tears that could not be restrained--he was so astonished, humbled, and grateful to be recognized and honored by his peers. As broadcast co-anchor, Shon made the announcement and spoke of Phil’s current battle with cancer, his indomitable spirit, and his many friends in the community who look up to him and are lifted and inspired by his courage. (If I can figure out how to load video and post pictures, you'll be able to share this exciting experience. I'll work on it.)

What’s next? We look forward to September 12 when Phil will have a CT scan so we can find out if the chemo is still working. We'll keep you posted. Meanwhile, thanks to all of you for your faith and prayers. We couldn't do this without you!

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!

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."

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!

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!!!

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!

The fight is on!

Today Phil's medical oncologist at Huntsman Cancer Institute confirmed what we already suspected--Phil has Stage IV colon cancer which has metasticized to the liver. He was told 6-12 months without any intervention--perhaps 2-3 years with chemotherapy. Phil has an incredibly upbeat attitude and is determined to beat this, and I know he can!

Here's the current regimen:

ASAP: The oncologist ordered a PET scan to determine if there's more cancer in his body (e.g., lymph nodes and glands, etc.). Our insurance company has to give approval and then this test will be scheduled--we're hoping to get it done while we're in Salt Lake this week.

Today, Monday, March 28: Phil had a CEA (carcinoembryonic antigen) blood test which measures a protein indicating "how extensively cancer has spread."

Friday, March 4, 8:00 a.m.: Phil has a consultation with a surgical oncologist at Huntsman, but his medical oncologist is not too optimistic about surgical options. Any surgery would postpone chemotherapy, which the oncologist feels is our best and most expedient option. During the consult, the surgeon will also schedule surgery to implant a chemotherapy catheter in Phil's chest (for chemo infusions). We're told this surgery will probably take place on Monday, March 7.

Also on Friday at 9:00 a.m.: Phil will have the first of 8 iron infusions to counter severe anemia resulting from blood loss due to the ulcerated tumor in his colon. The first infusion will be by IV, but the others can be infused through the catheter. Also, the oncologist said Phil can probably have the other 7 infusions (and possibly some of the chemotherapy infusions) at Allen Memorial Regional Hospital in Moab, at their new Infusion Center. In either case, iron or chemo infusions, Phil will need to have the first round at Huntsman to rule out any adverse reactions, then the others can be in Moab. We're very hopeful about getting treatments closer to home!

Tuesday, March 8: Phil's oncologist will present his case for discussion by the Huntsman GI Tumor Board. The board is made up of specialists in all areas of GI cancer treatment who will have studied Phil's diagnostic tests and, as a well-oiled team, make recommendations based on their various areas of expertise.

Wednesday, March 9, 9:40 a.m.: Phil will see the oncologist again to learn what the Tumor Board recommended.

Introspection: When we walked out of Huntsman we were overwhelmed by the vast amount of information we had received in such a short time. I collected facts, facts, facts in my notebook, writing as fast as I could.

Phil, on the other hand, collected feelings. Here's what he told me. He felt he had found a new friend in his oncologist--Phil felt this was someone who believed in his ability to beat this cancer and someone who really cared about him. That's my husband. He, like Will Rogers, can honestly say he never met a man he didn't like. Phil's positive outlook and his tremendous faith in God will pull him through the trials ahead.

And I'll have his back all the way . . . along with our six children (John, Jeff, Adam, Mark, Liz and Becky), extended family members, and an incredible network of true and treasured friends in Moab and Blanding. Thank you all for your faith, prayers and support!

We love you all!

Got lots of calls yesterday . . .

Sorry for the confusion. Initially Phil had an appointment to get results on February 22nd (yesterday). But that was with our previous doctor who told us if it wasn't prostrate-related he wouldn't be our doctor.

Phil and I decided it would be better to wait till we see the gastro-intestinal oncologist because he would not only give us results, but he could also answer our questions and discuss possible treatments.

Log on Monday, February 28, for the latest.

We wait again . . .

Phil and I are headed home tomorrow, after being in Salt Lake for the past week. Today they took five biopsies from Phil's liver. He tolerated the procedure well, including two hours in recovery. It will take a week for the colon biopsies to culture, and 72 hours for the liver biopsies. We were hoping to see a gastro-intestinal oncologist asap for results, diagnosis, prognosis, and a treatment plan, but it appears we have to wait till February 28 before Phil can get in.

It's hard to wait . . .

The fight begins!

Today they found a large "likely malignant" tumor in Phil's colon, close to the liver. Tomorrow they do the liver biopsies.

We return to Huntsman next Tuesday, the 22nd, to meet with Phil's oncologist and get results. The biopsies will take a week to culture.

Thanks for your faith, prayers and support!

A tiring day . . .

Last night I asked Phil how much information he wanted me to share on the blog. He said, "All of it. You never know if it might help someone."

After the ultrasound this morning (described below), we went to breakfast in the hospital cafeteria and stayed there till it was time for Phil's injection of radioactive tracers (11:00 a.m.). I had to wait outside the restricted area and grew more and more anxious when the procedure that was supposed to take "a few seconds," took nearly a half hour. Turns out they couldn't get a good vein so Phil was poked and poked and exhausted by the time they got it done.

We spent most of the next three hours sitting in the hospital foyer outside Starbucks. They had a grand piano and for awhile, a young man played beautiful renditions of "The Shadow of Your Smile" and "Autumn Leaves," among others. We were happy to see a few familiar faces from home. We saw Lila Redd and her son Brett from Grand Junction--turns out President Lem Redd came for an office visit last Tuesday and ended up in ICU. Later we saw Lem and Lila's daughter Kathryn & her husband Rob Wilcox. Our prayers are with President Redd and family.

We also visited with Norman and Margie Lyman. Norman was there for tests which turned out great, and we're so happy for them!

Then my sister Wendy came and fetched us for a brief visit to her office in the Education Department--she works on scholarships and financial aid for med students. That was a highlight!

When we reported back to Nuclear Medicine, I wasn't allowed to be with Phil during the bone scan, but he described being wrapped tightly around the torso with his arms secured against his body to prevent movement. Phil was too wide for one scan so special accommodations (which I didn't completely understand) were made to get pictures of both elbows. Fortunately, Phil was able to sleep part of the time. Should have results by Monday.

Three down (CT scan, ultrasound, bone scan), two to go. Phil's colonoscopy will be Monday at 2:00 p.m. and liver biopsies are scheduled for 9:45 a.m. on Tuesday.

Although we're getting very homesick, and Phil is extremely anxious to get back to work, we feel very blessed to be treated at Huntsman and University Hospital.

Here's to a quiet Saturday . . .

More follow-up . . .

This morning we arrived at the University Hospital's Radiology Department at 6:45 a.m. for Phil's scheduled "ultrasound-guided liver biopsy." Not sure where the miscue occurred, but biopsies were not scheduled--only ultrasound. After the tech shot 82 pictures of Phil's liver, spleen, and left and right kidneys, a very congenial radiologist, Dr. Dan Sommers, visited with us. He explained 1) Phil has four lesions on his liver, 2) it is customary to do ultrasound first to determine if biopsies are needed and the lesions accessible, 3) he is confident he can safely do the biopsies, 4)it's necessary to have a team present (pathologist and lab) whenever biopsies are performed, and 5) it looks like Tuesday may be the first available opportunity.

Whatever it takes, that's what we'll do!

Now it's on to Nuclear Medicine where Phil will be injected with a small dose of radioactive material and wait three hours for the scan. During that time, the radioactive tracers circulate through the body and accumulate wherever they find abnormal bone metabolism. These areas are called "hot spots."

Time to go . . .

Getting close to a diagnosis . . .

Arrived at Huntsman at 9:00 a.m. and left around 3:00 p.m. Phil had labs and we spent the morning filling out paperwork, being interviewed by a very nice intern, and then meeting with the medical oncologist. I had a major (AND I DO MEAN MAJOR) meltdown when it looked like we were being put off. Finally things started happening!

Within an hour, our scheduler, Judy, worked magic and got Phil a CT scan that afternoon at Huntsman. As it turned out, he had just 10 minutes to get upstairs and start drinking the barium smoothie (one dose every 15 minutes for the next two hours) for a scan that took all of 10 minutes!

Judy also scheduled Phil for a bone scan at University Hospital tomorrow. At 11:00 a.m. he will receive an injection of radioactive dye, wait three hours, and then have the scan.

Scheduling the colonoscopy was not that easy. The first available date--April 25! But Judy wouldn't give up and eventually landed us a 2:00 p.m. appointment on Monday at University Hospital. TRIPLE CROWN!

Judy said, "Someone is watching over you!" This just doesn't happen. (We know . . . It's an answer to prayer.)

About an hour after we left Huntsman the doctor called. The CT scan showed spots on Phil's liver and they need to be biopsied. He asked if we could come back tonight or tomorrow morning. Of course. His nurse called next to inform us that Phil is scheduled for liver biopsies at 7:00 a.m. tomorrow at University Hospital.

Off to bed . . .

Finally . . .

Today we are very grateful for Michele Lyman, PA, our long-time friend and health care provider, for fighting to get Phil into Huntsman--even before he had all the diagnostic tests. I really wanted Phil to have one doctor and one location for all tests and treatments, and Michele prevailed! Phil has an appointment with Dr. Agarwal, a medical oncologist, on February 10 to discuss what comes next.

I've always said there's only one thing worse than knowing what's wrong, and that's not knowing. Right now we wait . . . but once we know, we fight!

Thanks to everyone for your faith and prayers!

It's Sunday . . .

As members of the Church of Jesus Christ of Latter-day Saints, Phil and I believe that we are placed on this earth to gain experience and strive to be like our Savior Jesus Christ. In our effort to become Christlike, we face many trials and challenges, but we believe that when we put the gospel first, everything else falls into place.

Proverbs 5:6-7 "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."

In limbo . . .

Nothing much to report. No one called either of us yesterday. Phil called the clinic and talked to a nurse who said the doctor at the University of Utah Hospital now has all his records. So we wait . . .

Our phones haven't been working very well. Last night before I went to bed I checked for messages and couldn't believe it when I realized that Dr. Madison called on Thursday at 1:04 p.m. He had visited with Terry, sorry he missed me, call back. How did I miss that??? SO DISCOURAGING. After trying so hard to make something happen, I WAS THE ONE WHO DROPPED THE BALL. That was an agonizing discovery.

If we don't hear from the University Hospital on Monday, I'll call Dr. Madison to see how fast we can get the scoping done at Southwest Memorial in Cortez, Colorado.

As always, Phil is in great spirits and we're very optimistic!

Still waiting . . .

Phil has to have an endoscopy and a colonoscopy. We're so remote, and the surgeon who does these procedures only practices at Blue Mountain Hospital on Mondays and Fridays. Right now he's on vacation and won't be back till February 7. We have a consult scheduled that day, but that's just too long to wait just to discuss what happens next. I want to take Phil straight to Huntsman Cancer Institute but they won't accept new patients unless these procedures have been done and they have a cancer diagnosis.

Yesterday I got radical and told Michele we wanted to go directly to Huntsman, regardless of their policy, and would she please fight for that. I told her they would probably just repeat all the tests and we didn't want that. We want to move fast and we want the best possible treatment. We want a seamless continuum of care and that will be easier if Huntsman is involved from the start. Michele said she'd try.

In the meantime, our daughter Liz suggested contacting Dr. John Hayes, who successfully treated Phil five years ago for prostate cancer. Phil contacted his office. My mom thought of calling my brother, Terry who practices at Southwest Memorial Hospital in Cortez. As a podiatrist, he has a lot of connections and he contacted Dr. Madison, their surgeon, but that hasn't panned out. And Phil said he might try finding someone in Moab, but so far, no luck there, either.

Last night Michele called to report that she found a doctor at University of Utah Hospital who agreed to look at all Phil's records to decide about accepting him as a new patient. So Michele contacted Dr. Hayes and was waiting for his files so she could send everything together. If Phil gets treated at University Hospital he shouldn't have to go through the tests again. University Hospital and Huntsman use the same electronic files, we'll be in the system and Phil can be transferred directly to Huntsman.

Still waiting for any word on that . . .

Here's the latest . . .

To get the word out, I'm going to start this blog about what's going on since the doctors told us they suspect Phil's cancer has returned. Here's some of my notes so far.

It's 3:00 a.m. on Thursday, January 26, 2011 and we just got home from the hospital. Phil had to have a blood transfusion--two pints of blood and Lasix via IV. The Lasix is for water retention. The blood is for raising his very low red blood cell count. Normal hematocrit for a man is 47--Phil's was 27. Normal hemoglobin is 12--Phil's was 6. We've been given two possible causes 1) internal bleeding (though he showed no signs), or 2) his cancer has returned.

Phil went in on Wednesday, January 25, for a 3:00 p.m. appointment with our provider, Michele Lyman, PA (Physician's Assistant) to check a sore on his leg that wasn't healing and see why his legs were swelling. He left 12 hours later, after being sent across the hall to the hospital for an outpatient blood transfusion. I was at work when Phil called around 4:30 p.m. to tell me what was happening. I called Becky and she went over immediately (and stayed till 11:00 p.m., and I was so grateful for that!). I left my office in Monticello and arrived at Blue Mountain Hospital in Blanding around 5:00 p.m. Then it was hurry up and wait.

At 8:00 p.m., after typing, cross-matching, and warming the blood, the transfusion finally began. The blood had to drip very slowly--about 2 hours/unit) but luckily Phil slept through most of it, till it was finished at just after 1:30 a.m. Then we had to wait an hour for a blood test--which was really about an hour and a half--and then we went home.

Phil was anxious to get to work because he usually leaves by 2:15 a.m., so he jumped in the shower and rushed off to Moab! (Yes, he's crazy!) They told him he'd feel better after the transfusion, but Phil said he never knew he didn't feel better before it. He's such a brick!

As for me, I'm a big baby and I was so wired I couldn't go to sleep till 6:00 a.m. Three hours later the phone rang and it was Michele calling to give me a report. The transfusion had raised Phil's levels by 3 counts (out of 6 possible). Michele said she and Dr. Nielson and Dr. Jones agree that cancer is the only possible reason for what's happeing. I asked if she suspect bone cancer, since Phil had prostate cancer five years ago and if prostate cancer metasticizes it usually goes to the bone. Michele said there's no reason to speculate; it could be a completely new cancer not related to his previous cancer.

It's just so hard not knowing and having to wait to find out . . .