Some of you will be anxious to know the results of Phil's CT scan on Friday, March 9, 2012. Unlike his last three scans, this time there are changes, namely:
1. Segments of the existing tumor in the transverse colon appear to be more confluent (running together).
2. What appears to be narrowing of the descending colon in two places could be two new tumors, or normal movements of the bowel (peristalsis).
3. Liver tumors are unchanged.
4. There is some increase in the size of lymph nodes near the liver.
Dr. Weis is concerned about Phil's consistent weight loss, which could be caused by cancer spreading or by the side effects of chemo. Since research indicates that a brief "time-out" from chemo will not negatively impact chemo's effectiveness in the long run, Dr. Weis took Phil off chemo for one month. Now Phil's job is to try and gain weight--not an easy task since, according to Phil, "Everything tastes like cardboard." Hopefully, further out from chemo food will begin to taste like food again.
Also, since cancer cells eventually adapt to chemo and become resistant (similar to viruses adapting to antibiotics), Phil will have a colonoscopy to biopsy the tumor in his colon. Biopsy samples will be cultured for genetic markers to determine whether Phil's tumors will respond to other chemo regimens--so we'll have a back-up plan. This time-out is the perfect opportunity, since Phil has to be off Avastin for 3-4 weeks before being biopsied. (Avastin significantly increases the risk of fatal bleeding.)
Hopefully after one month there will no longer be a shortage of Leukovorin. Leukovorin and several other cancer drugs are going generic, which means huge cost savings for consumers (if the drugs can be found), but little incentive for drug companies to produce them. Phil received Leukovorin at his last infusion on February 28, but right now, both Moab Regional Hospital and Huntsman Cancer Institute are out of this drug.
If you're friends with Phil on Facebook you know that he always has a plan of ATTACK!!! and this is no exception. Phil is still the eternal optimist--a true man of faith--and he's still determined to "beat this!" We know that we have your faith and prayers and best wishes. We want you to know that we feel your support, and that means more than we can express.
At University Hospital Feb. 2011
February 11, 2011 at University of Utah Hospital
Sunday, March 11, 2012
Tuesday, February 14, 2012
Happy Valentine's!
One year ago today, my sweetheart and I sat in the foyer of the University of Utah Med Center waiting for Phil's colonoscopy. That wasn't the beginning, but that was the definitive moment in a long series of doctor's visits and diagnostic tests. That was the pivotal event that changed our lives forever.
Two weeks later, we sat in the office of Dr. John Weis at the Huntsman Cancer Center waiting for news that we already anticipated would not be good. Phil had endured a CT scan, PET scan, liver ultrasound with biopsies, multiple blood tests, and the colonoscopy—and now we waited for results.
Phil liked Dr. Weis the moment he walked in the office. Dr. Weis was extremely friendly and upbeat, despite his pronouncement: “You have Stage IV Colon Cancer." His candor and confidence gave us a sense of optimism and hope.
"What does that mean?" Phil asked.
"What do you know about Stage IV Colon Cancer?" Dr. Weis countered. It was no mystery to us that the doctors suspected colon cancer. I had researched colorectal cancer extensively and I knew exactly what that meant.
"Stage IV means Phil has a primary tumor in his colon and the cancer has metastasized to one or more organs outside the colon,” I said, mechanically.
"Yes," replied Dr. Weis, turning to Phil. "You have a tumor blocking two-thirds of your colon at the hepatic flexure, and several tumors in your liver."
"What does that mean?" Phil asked.
"What do you know?" Dr. Weis responded.
Again, I replied, "It means the cancer cannot be cured."
"That's right," said Dr. Weis. This was a novel way of delivering bad news, I thought, asking us what we knew. Lucky for him, I was well informed. I suspected Dr. Weis was relieved that he didn't have to say the words that Phil and I had hoped we would never have to hear.
"What can we expect? How much time?" I asked, perfunctorily, as if the question was coming from somewhere or someone else. No matter how well prepared you feel you are, news like this leaves one feeling shocked, disoriented, and strangely detached, like stepping out of time, losing touch with reality and all sense of reason.
Again, Dr. Weis addressed his response to Phil. "You have six to 12 months, if we do nothing. If you have chemo, I think I can keep you alive for two to three years."
Phil's response was spontaneous. "I'M GOING TO BEAT THIS! I am a planner and a dreamer and I have a lot to accomplish. I'm not giving in. I want you to know that when I decide to do something, I GET IT DONE!"
Dr. Weis' response was immediate and forceful. "Good, we'll start chemo right away. I have at least three regimens we can use, and when one stops working, we'll try another."
Phil was referred to Dr. Skaif, a petite and demure surgeon with a very direct bedside manner which we very much appreciated. She described Phil's tumor as infiltrating outside the colon, therefore, inoperable. She also defined eight tumors, about the size of walnuts, in Phil's liver and she suggested the possibility of surgery. However, a subsequent PET scan determined that Phil had a congenital defect--the left lobe of his liver never developed--so surgery was not an option. There wasn't enough liver to regenerate. In an outpatient surgery, Dr. Skaif implanted a port under Phil's skin on his shoulder which provided direct access to a major vein entering his heart. Chemo would be delivered by accessing the port, saving his veins from collapse.
On March 14 Phil started chemo treatments every other week—Modified Folfox 6 with Avastin (plus six rounds of Oxaliplatin). Dr. Weis described Phil's cancer as a "chronic condition" that would require treatment for the rest of his life. And we are thankful that the chemo has been successful in shrinking the primary tumor and arresting any growth or spread over the past year.
Today Phil had his 24th round of chemo. And in today's news was a report of fake Avastin being distributed in the US; I only hope no bad drugs came to Utah. Avastin is one of the drugs listed in short supply so we feel blessed every time Phil is able to get Avastin. It has been instrumental in extending his life and we are grateful.
Anyway . . . as I reflect on this Valentine's Day . . . I realize that over the course of Phil's cancer, we have been strangely comforted. Maybe not so "strangely," when you consider that we believe in God and in his son Jesus Christ and we place our faith in them. We believe that prayers are answered, and when we don't get the answers we want, we trust that the Lord knows what's best for us and we accept His will.
For now . . . we're very thankful that we've had one more Valentine's Day filled with infinite love for one another. "Infinite" . . . what a comforting word. As members of The Church of Jesus Christ of Latter-day Saints, Phil and I know that because we are sealed to one another in the Lord's holy temple, if we keep the Lord's commandments and strive with all our hearts to do what's right, we will be together with our loved ones for eternity. And in the end—whenever that may be—that's all that really matters. Besides, it’s not really the end . . .
Happy Valentine's Day everyone!
Two weeks later, we sat in the office of Dr. John Weis at the Huntsman Cancer Center waiting for news that we already anticipated would not be good. Phil had endured a CT scan, PET scan, liver ultrasound with biopsies, multiple blood tests, and the colonoscopy—and now we waited for results.
Phil liked Dr. Weis the moment he walked in the office. Dr. Weis was extremely friendly and upbeat, despite his pronouncement: “You have Stage IV Colon Cancer." His candor and confidence gave us a sense of optimism and hope.
"What does that mean?" Phil asked.
"What do you know about Stage IV Colon Cancer?" Dr. Weis countered. It was no mystery to us that the doctors suspected colon cancer. I had researched colorectal cancer extensively and I knew exactly what that meant.
"Stage IV means Phil has a primary tumor in his colon and the cancer has metastasized to one or more organs outside the colon,” I said, mechanically.
"Yes," replied Dr. Weis, turning to Phil. "You have a tumor blocking two-thirds of your colon at the hepatic flexure, and several tumors in your liver."
"What does that mean?" Phil asked.
"What do you know?" Dr. Weis responded.
Again, I replied, "It means the cancer cannot be cured."
"That's right," said Dr. Weis. This was a novel way of delivering bad news, I thought, asking us what we knew. Lucky for him, I was well informed. I suspected Dr. Weis was relieved that he didn't have to say the words that Phil and I had hoped we would never have to hear.
"What can we expect? How much time?" I asked, perfunctorily, as if the question was coming from somewhere or someone else. No matter how well prepared you feel you are, news like this leaves one feeling shocked, disoriented, and strangely detached, like stepping out of time, losing touch with reality and all sense of reason.
Again, Dr. Weis addressed his response to Phil. "You have six to 12 months, if we do nothing. If you have chemo, I think I can keep you alive for two to three years."
Phil's response was spontaneous. "I'M GOING TO BEAT THIS! I am a planner and a dreamer and I have a lot to accomplish. I'm not giving in. I want you to know that when I decide to do something, I GET IT DONE!"
Dr. Weis' response was immediate and forceful. "Good, we'll start chemo right away. I have at least three regimens we can use, and when one stops working, we'll try another."
Phil was referred to Dr. Skaif, a petite and demure surgeon with a very direct bedside manner which we very much appreciated. She described Phil's tumor as infiltrating outside the colon, therefore, inoperable. She also defined eight tumors, about the size of walnuts, in Phil's liver and she suggested the possibility of surgery. However, a subsequent PET scan determined that Phil had a congenital defect--the left lobe of his liver never developed--so surgery was not an option. There wasn't enough liver to regenerate. In an outpatient surgery, Dr. Skaif implanted a port under Phil's skin on his shoulder which provided direct access to a major vein entering his heart. Chemo would be delivered by accessing the port, saving his veins from collapse.
On March 14 Phil started chemo treatments every other week—Modified Folfox 6 with Avastin (plus six rounds of Oxaliplatin). Dr. Weis described Phil's cancer as a "chronic condition" that would require treatment for the rest of his life. And we are thankful that the chemo has been successful in shrinking the primary tumor and arresting any growth or spread over the past year.
Today Phil had his 24th round of chemo. And in today's news was a report of fake Avastin being distributed in the US; I only hope no bad drugs came to Utah. Avastin is one of the drugs listed in short supply so we feel blessed every time Phil is able to get Avastin. It has been instrumental in extending his life and we are grateful.
Anyway . . . as I reflect on this Valentine's Day . . . I realize that over the course of Phil's cancer, we have been strangely comforted. Maybe not so "strangely," when you consider that we believe in God and in his son Jesus Christ and we place our faith in them. We believe that prayers are answered, and when we don't get the answers we want, we trust that the Lord knows what's best for us and we accept His will.
For now . . . we're very thankful that we've had one more Valentine's Day filled with infinite love for one another. "Infinite" . . . what a comforting word. As members of The Church of Jesus Christ of Latter-day Saints, Phil and I know that because we are sealed to one another in the Lord's holy temple, if we keep the Lord's commandments and strive with all our hearts to do what's right, we will be together with our loved ones for eternity. And in the end—whenever that may be—that's all that really matters. Besides, it’s not really the end . . .
Happy Valentine's Day everyone!
Wednesday, December 21, 2011
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!
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!
Wednesday, November 23, 2011
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!
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!
Sunday, August 21, 2011
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!
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!
Friday, July 8, 2011
High 5 to our friend, Dov Siporin
Go to this site to view a brief news story about our amazing friend, Dov Siporin. Dov has battled stage 4 colon cancer for nearly 4 years while selflessly lifting and inspiring hundreds, despite his own suffering!
http://www.ksl.com/?nid=148&sid=16279383
This recognition is truly well-deserved!
http://www.ksl.com/?nid=148&sid=16279383
This recognition is truly well-deserved!
Sunday, June 26, 2011
Finally . . . good news!
Here's what has happened since my last post:
May 23: We were anxious for Phil to have his sixth chemo treatment so he could get a PET scan and we would know if the tumors were shrinking, staying the same, or growing unchecked. But Phil's absolute neutrophil count (ANC) was way down, so chemo and the PET scan would have to wait. His body needed time to rebuild from the damage caused because chemo kills good and bad cells alike.
With Phil's immunities dangerously low, he fell prey to a series of troubling infections which became a major challenge.
May 19: Phil came home from work feeling ill. That evening he spiked a fever that resulted in a trip to the ER. After a series of inconclusive tests, Phil was treated with a broad-spectrum oral antibiotic and he responded well.
May 23: Phil developed a number of cold sores on his lower lip and chin which a provider at the clinic described as "typical of AIDS patients." Suppressed immunities result in every infection being worse than average. This time Phil's virus was treated with a topical ointment.
May 27: Phil complained of pain in his elbow, which had become red, hot, and swollen. Another trip to the ER resulted in 7 IV antibiotic treatments every 12 hours over the next 4 days. We were so grateful to Becky in the ER, and Liz and Mark who came for the weekend--they really kept Phil laughing and I'm sure their visits were as healing as the drugs, if not more so. Special thanks to our awesome sons-in-law, Brian Kirby and Brandon Weilenmann, for taking charge of the kids while their wives cheered their Dad and me. What great children we have!
May 30: Blood work showed Phil's immunities had improved significantly. But his oncologist wisely decided Phil needed more time to recover from so many infections.
June 7: With Phil's ANC nearly normal, he finally received his sixth treatment at Moab Regional Hospital. That was a rough chemo week, but the second week was better and we were able to enjoy our Cook Family Reunion on Father's Day weekend. This was a celebration for my dad's 90th birthday and my mom's 84th birthday--Happy Birthday, Mom and Dad!
And Happy Birthday, Phil, this Friday, July 1!
At the reunion, Phil enjoyed a great nap on our super-plush, queen-sized air mattress with all our tent windows rolled open. Later we had a great dinner and program, but when the sun went down, it got downright chilly! One of Phil's chemo drugs makes him extremely sensitive to cold, especially his mucous membranes which swell and make it difficult for him to breathe. So around 10:30 we abandoned our tent and went home to sleep, but we were back bright and early so Phil could mix up pancakes for everyone, which my brother Terry flipped on the griddle! Being the oldest of eight, and the "designated reunion planner," I stressed big-time because between Phil's treatments and my job, I didn't have the time nor focus to do it right, but everything went off without a hitch. We had a great weekend and Phil even felt good enough to help clean up.
HERE’S THE GOOD NEWS!
June 13 (Lucky 13): With six treatments behind us, Phil finally got a PET scan and the results showed: "No other new lesions are identified." . . . "The previously seen enhancing mass lesion involving the transverse colon has significantly decreased in size.” Bottom line--all 9 tumors have shown a “favorable response to treatment." SO REALLY GOOD NEWS!
Because cancer cells eventually adapt to chemo drugs and stop responding, one of the drugs (oxaliplatin) was withdrawn for now. This drug packs an initial punch, so dropping it early makes it possible to trick the cancer cells and bring it back later for another powerful punch (we hope). This is the drug that causes irreversible, peripheral nerve damage (numbness and tingling in extremities), and has made Phil's feet feel like “wooden blocks.” Also, since the drug will take some time to clear his system, the full extent of damage is not yet known.
June 21: Phil received his seventh chemo infusion, which was shortened by 1.5 hours without the oxaliplatin drip, and he has experienced less nausea. However, the fatigue factor seems to be ramping up with each new treatment. But Phil never complains--no matter what the side effects, he just smiles and says, “It goes with the territory!” He leaves for work at 2:00 a.m., no matter how sick or how tired he feels. Phil says work takes his mind off cancer, so I’m trying to quit encouraging him to “take it easy.” :~)
As members of The Church of Jesus Christ of Latter-day Saints, we're thankful for our faith in God and the Plan of Salvation which makes it possible for families to be together forever. Life does not end when we leave this earth. Families sealed together in His holy temples, who live up to the covenants made therein, will be together forever. This we know! These truths are a great comfort to us. We are His children and He loves us, every one. We are not alone in our trials. His Spirit comforts and guides us if we prayerfully place our trust in Him.
Proverbs 3: 5-6 "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths."
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."
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