Obituary for Max H Baker

After a two-year battle with cancer, Max H Baker passed from this mortal sphere on October 19, 2016 at his home in Farmington, Utah.  He was 65 years old.

Born January 9, 1951, Max was welcomed to this earth by parents Ray S. and Nelda Baker of Teton, Idaho.  He learned much about hard work and integrity from his parents as he helped to work the family farm.  His perseverance and tenacity carried over to his education, and after graduating from South Fremont High School in 1969, he attended Brigham Young University, graduating with a BA in History and going on to earn his Masters of Public Administration from BYU.  He went on to have a successful career in city and county governments in Aztec, New Mexico; Daly City, California; Farmington, New Mexico; Joplin, Missouri; and ultimately Los Alamos, New Mexico, where he served as finance director, deputy county administrator, and then county administrator.  He retired in October 2009, having earned the respect and admiration of many coworkers and citizens along the way.

At BYU, Max met his sweetheart, Kathryn Diane Sperry, of Joplin, Missouri.  They married on May 26, 1978 in the Idaho Falls LDS Temple.  They are the parents of three children: Elizabeth Ann, Martin Alexander, and Ray Galen.  They made their homes in the many towns that Max served in, and following his retirement, he and Kath relocated to Utah to be nearer to family.

Max was a beloved husband, father, brother, grandfather, uncle, and cousin.  He is survived by his wife, Kath (Farmington, UT); his children Beth (Nathan Given; Lehi, UT), Alex (Julia; Los Alamos, NM), and Ray (Farmington, UT); sisters Marsha (Dennis Phillips; St. Anthony, ID) and Julie (Dee Mackliet; Farmington, UT); brothers Wayne (Kay; Teton, ID), Phil (Valerie; Teton, ID), and Marc (Ruth, American Fork, UT); and nine grandchildren: Logan Max, Emeline, Joshua, Kaylee, Abigail, Leah, Mayzie, Andrew, and Brett.  Max was preceded in death by his parents and a sister, Cheryl.

Max was devoted to the gospel of Jesus Christ and a lifelong member of The Church of Jesus Christ of Latter-day Saints.  He served in many capacities in the Church, including elders quorum president, clerk, bishopric, high council, Gospel Doctrine and Primary teacher, ward mission leader, and temple cafeteria volunteer.  His unwavering loyalty and integrity throughout his life is exemplary of a true follower of Jesus Christ.

Funeral services will be held on Friday, October 21 at 11am at the LDS chapel on 1395 S 200 E in Farmington, UT.  A viewing will be held before the service from 9:30-10:30.  Interment will be at the Farmington cemetery.  In lieu of flowers, please donate to Primary Children's Hospital.

With Heavy Heart

After two years of writing his own blog posts, Dad asked last Friday night if I (his daughter, Beth) would take over.

On Wednesday, October 12, he had gotten his latest results of the scan -- and they weren't good.  His lower abdomen was looking fine, but his lungs had gotten significantly worse.  There were hundreds of tumors, some as large as 2cm, all throughout his lungs.  All the different chemo drugs, with all their horrific side effects, hadn't been slowing the cancer at all.

His doctor said that every patient is different, but he likely had between only 2 weeks and 4 months to live.

Dad didn't want the news to be all over the Internet right away.  He told his children, and he asked his sister Julie to tell his siblings and their children.

I was optimistic that there would be time to share this latest update slowly and carefully, as he always was prone to do with his health matters.

But it turned out that he only had days to live.  He passed away around midnight last night, less than a week after getting those scan results.

He had beaten the odds for a long time, so it shows just how sick he truly was that, when given these odds, he was gone so quickly.  Dad was always one to downplay his own struggles and discomfort.

We are so glad we could all be together just a few weeks ago.  I have moved here to Utah just two months ago, about an hour south, and my brother Alex came to visit with his family during his daughters' school break from October 6-10.  We were able to take some pictures all together, and now these pictures will forever be priceless treasures.  We're especially glad that Brett, Alex's infant son, got to meet his grandpa.









Family is forever.  Dad knew that.  One of his last pieces of business on this earth was to renew his temple recommend, which just happened on Sunday.  We are grateful for this knowledge, that we will be together again.

But in the meantime, Dad, we will miss you so, so much!

Two new chemo drugs, many new side effects

It's been about a month since the last post, so it's time for another update.

They did a nerve block on August 29 to kill nerves around my upper abdomen.  This was to deal with the pain I've been having since last December. The dull ache in my side is likely due to the cancer having spread to my lungs; it's gotten progressively worse these past nine months.  Previously, I could feel it with every breath, so I was glad this procedure would offer some relief.  

Immediately afterward, my blood pressure took awhile to come back up, so they gave me two extra liters of fluid. 

I went home but still felt pretty light-headed when standing. After a few days of this, I finally went back and they gave me two more liters of fluid. They took some blood at the end and found I was really anemic, so they gave me three units of blood. They also drained a liter and a half of fluid from the lining of my lung which helped with shortness of breath. After all of that, I finally felt pretty decent.  The nerve block has dulled the pain some, which is a relief.

Tarceva, the new chemotherapy drug that I started in mid-August, was giving me so many side effects (heartburn, rash/acne) that the oncologist reduced the dosage and now those side effects are much more manageable.  One side effect that has not gone away, unfortunately, is extreme fatigue.  I thought I was pretty tired before from regular chemo, but this is even worse.

When I saw the doctor again in mid-September, he said that the chemo infusion drug that had worked for so long and got me the ten months of remission was now wreaking havoc on my bone marrow. I have basically stopped producing red blood cells. They gave me another unit of blood that day, so in between that transfusion and the three units I received earlier in September, that's four units total -- about half of the total blood volume. Because of this, Dr. Gilcrease took me off the chemo infusion drug and put me on one that is the second in the arsenal against gallbladder cancer.  The name of the drug is 5FU and it has some pretty hefty side effects: mouth sores (I haven't had too much of that yet) and some chest pain (nothing too debilitating so far; it feels like pressure around my chest).  It's delivered over a 48-hour period via a small ball that hangs around my neck.  I don't need to go to Huntsman for infusion now, though I still go every other Friday to receive the "chemo ball" and to meet with the doctor.

Overall, this past month has been particularly challenging.  I've lost weight and I've lost a lot of strength.  The fatigue is relentless.  It's hard to remain positive but I'm doing my best.  We will do scans in the next week or two, and then we'll be able to see whether these new drugs have been doing what they're intended to do.

Thanks as always for your continued words of encouragement, concern, and prayers.  They mean so much to me and my family.

New Chemo Drug

After originally being denied by the insurance company and the drug manufacturer, we appealed to the insurance company and were finally approved for the drug Tarceva.  Tarceva is a daily oral pill that is a targeted therapy for one of the mutations found in my genome study.  It is typically approved for lung and pancreatic cancer.  I began taking Tarceva on August 12th.  That was also a chemo infusion day which we are now increasing to an every-other week frequency.

Tarceva does have some side effects.  The most debilitating that have come to me so far is extreme fatigue.  (This is in addition to the fatigue I have been dealing with already from chemo and have talked about before; it's just more of that same thing.)  Since Tarceva works best in an acidic environment, I've also been dealing with severe heartburn.  When I contacted the oncology nurse about this, she worked with the pharmacist and they recommended taking Pepcid a couple hours after the Tarceva.  That has worked quite well.  The third side effect is a rash.  This has demonstrated itself like a very bad case of acne on my nose and chin.  There are hundreds of whiteheads that sometimes break and bleed a little.  I've been prescribed an antibiotic and some cortisone ointment.  We'll monitor for five days and decide then if we need to reduce the dosage of the Tarceva.

We saw the oncologist again prior to my chemo infusion on August 26th.  Dr. Gilcrest recommended that we talk with a pain doctor on the supportive team at Huntsman Cancer Institute.  While the pain across my abdomen is not severe and can be managed okay with Tylenol and an occasional Lortab pill, it is constant; it is always there with every breath.  We decided to go with the oncologist's recommendation to see a pain doctor, and Dr. Jill Sindt was able to talk with Kath and me while the infusion was dripping in.  

Dr. Sindt really knew her stuff.  She'd had studied my chart thoroughly beforehand and took the time to talk through the options, answering every question in a kind way.  I felt like she was really trying to understand and relate to all I was going through.  After discussing our options, we decided to do an outpatient procedure on Monday morning for a nerve block.  They will sedate me and, under X-ray, give me two shots through my back that will actual kill the appropriate nerves.  It should last 3-5 months before new nerves grow back.  They use the recent CT scans to locate the appropriate nerve bundles and success is high.  When I asked her if those nerves are needed, she said that they certainly are in a healthy person; they are the early warning signs of trouble going on.  In my case, however, they already know there is trouble and what is affected, so that warning system isn't really needed.  This will reduce the pain by at least 50% and pills can be used to manage the rest.

Anyway, things continue to move along.  It seems like a lot of treatments, and I'm too fatigued to do a whole lot but just go through them.  It's a rough patch that we're going dealing with right now, but I'm confident we'll get through it as the Tarceva and chemo continue to overcome the cancer.

I've had a lot of phone calls and visits over the past several days, as well as friends and neighbors bringing food and good wishes.  I'm continually reminded of family's and friends' kindness and support.  All the short visits, calls, e-mails, text messages, thoughts, and prayers really do help to keep my attitude in a positive realm.  Your service really does make all the difference.  Thanks so much.

More Chemo and Scan Results

Since the last post we've been doing chemo on a reduced schedule of one week on followed by two weeks off.  It doesn't give me so much fatigue although it is still present to some degree.

About a month ago I started getting the pain in my abdomen again.  Seems like it has gotten a little worse and now I can feel it most of the time.  I'm also getting lots of mucous and phlegm in the back of my throat.  I imagined that both are caused by the small tumors called adenocarcinomas in my lungs.  The literature says that they are the cause of increased mucous.

With these new symptoms, the doctor ordered another CT scan which we did on Wednesday of this week.  The results were mixed. In terms of the lung lesions, some are smaller, some are unchanged, and some are larger compared with the last scan in mid-April.

Other areas, such as the adrenal glands and liver, were really no different.  And there were no tumors in new areas. 

That means there was nothing on the scan which accounts for the pain in my abdomen or increased phlegm in the back of my throat.  The blood tumor marker continues to decline which adds to the "mixed" nature of the results.  The results just weren't very conclusive. 

We decided to add an oral chemo drug and see how that goes. They need to work with the insurance and maybe the drug company to get this approved since it is never on the formulary.  Others have been successful in getting the drug company to provide it without charge when insurance won't budge.  It might take a week or two to find out. The other option was to increase chemo frequency, but that has the downside of doing blood transfusion every month or so as well as increased fatigue which really drops the quality of life overall.

We do chemo again next Friday.  When we questioned the doctor about other options that he might have up his sleeve, he seemed pretty hesitant to put me in the clinical trial for immunotherapy.  They are in a "pause" with that right now doing some intermediate analysis of results.  Because of my 40+ year history of ulcerative colitis (an auto-immune disease), he feels that the side effects might be really debilitating and not worth it.  We might talk more about that.  The doctor also wondered if we would want to go for a second opinion about treatment, but I'm not sure it would yield any new options since we're already going to one of the premier treatment centers in the country.

In terms of the burn on my abdomen, we had our last visit to the Burn Center about six weeks ago.  We did the twice daily dressing change for a couple of weeks and now I just put lotion on it twice a day to keep it from drying out and cracking the new skin that's growing over the wounded areas.  So that is slowly getting better.  It still looks pretty bad since it is bright red. That doctor said it might take a year to blend back into my skin color.

As always, we want to thank everyone in my vast support system for their thoughts, prayers, e-mails, text messages, phone calls, and acts of service on our behalf.  I know there are many that I do not even know about.  This means a great deal to us and I know it helps a lot for me to keep a positive outlook even though things seem a little bleak.  Thanks so much.

Delays in Chemo

It's been a month since the last update, so it's time to let you know how treatment is going.

We've gone to the burn clinic several times so they can monitor progress and change treatments as needed.  We've been changing the dressing twice a day to keep it from drying out (which would slow the healing process).  They did inform us on the last visit that it is getting better; it's just healing slowly because of the chemotherapy.  I probably still have a month or two before it is healed enough to stop doing daily dressing changes.

Going into my regularly scheduled chemo infusion day of May 6th, I could tell that things weren't good because of some extreme tiredness and a little bit of dizziness.  Sure enough, my bloodwork showed I was anemic again (low red blood cell count).  The doctor decided to hold off on chemo and give me a unit of blood instead.  It made me feel a lot better.  

We returned a week later for more bloodwork.  When the doctor saw the results from those tests, he was surprised that the numbers had bounced back so much in just a week.  He said that he had been pretty worried that a downward spiral was starting, so the rapid improvement was a real relief.  He gave me another week off of chemo.

We saw the doctor again on May 20th.  The bloodwork that day looked good again.  The decision was made to greatly reduce the frequency of the chemotherapy treatments to keep the blood counts from getting so low and to help me just generally feel better.  We will now do one week of chemo and then have two weeks off.  We'll do a scan in a couple of months to make sure this is enough to keep the cancer in check.  Keep your fingers crossed.

Thanks for all the support you give in so many ways.   I appreciate the phone calls, text messages, e-mails, prayers, and good thoughts.  They come from everywhere, including some from outside of the country. They really do help me to stay more positive about this situation.  Thanks again. 

Chemo and Test Results

It has been quite a while since the last post.  I know many of you follow this to see how I am doing and are interested in progress.

Early in the morning of March 16th, I woke up and used the restroom.  While going back to bed, I passed out and fell on a space heater we had going in our bedroom.  I was kind of banged up and had a pretty extensive second degree burn on my abdomen.  We went to the emergency room at the University Hospital.  They took some x-rays and did a CT of my neck area to make sure nothing was broken since I had some pain in both my neck and arm from the fall.  They also treated the burn and made appointments at the burn clinic the next day.  The conclusion was that I passed out because of dehydration and some anemia resulting from chemotherapy.

Since then we have made weekly trips to the burn clinic. Until just a week ago we changed the dressing twice a day, but now we changed medicines and are doing the changing just once a day. It is healing, but it's taking twice as long because of the chemotherapy.  It is a really slow process with another six to eight weeks to go.

After the ER evaluation, we went back a few days for our regular appointment with the oncologist (nurse practitioner on this particular visit).  That day, we skipped the infusion of chemo drugs and instead did a blood transfusion with hydration at the infusion center. I have had blood transfusions before, but I noted how doubly careful they are these days.  They verbally double-checked between two nurses all the various things on the paperwork and on the actual bag of blood to make sure it is exactly the right thing.  They monitor vitals every fifteen minutes while it is dripping in, making sure there is no allergic or otherwise adverse reaction.  I did fine with the transfusion and immediately felt lots better.

Since then, I've had three more chemo infusions and things seem to be going along with them.  We've seen the therapy dogs a couple more times.  A young cancer survivor (about twenty years old) and her mother came by, stopping at every infusion chair to say hello and give out a gift card for ten dollars worth of gasoline and a candy bar or treat.  We didn't know she was a survivor until we asked the nurse later.  All she had said was "we hope these things make your day a little brighter as you deal with this stuff in your life."  It was pretty touching, especially after we knew a little more about her.

The last two chemo infusions have been positively different in a couple of ways.  Our son Alex came for a visit from New Mexico and went with us to the infusion on April 15th.  He said he wanted to get a picture of how it all works; now he knows what the 5-6 hours entails.  He helped pass the time and we appreciated his visit, as well as the many "honey-do's" he took care of for us at home.

On that same day, Alex and Kath walked over to the Primary Children's Hospital to see my niece and her husband, Candice and Cache Summers, and their new baby who is in the newborn intensive care unit there.  The baby had some complications at birth, and that facility is the best one in the Intermountain West to deal with serious pediatric problems.  It was my parents' favorite charity because of excellent care to both baby and family.  Anyway, Candice and Cache came to the Huntsman Center to visit me during infusion.  It also helped pass the time for me, and gave them a break to think about something else for an hour in their lives.  Thanks Alex, Candice and Cache.

At the infusion center we've also made the acquaintance of a young man who volunteers there, passing out snacks and running errands.  His name is Erik and he is an accountant but going back to school to be a doctor.  When Kath was "friending" him on Facebook, she discovered they had a common friend: a young man from Los Alamos, Keith Morgan.  Erik is Keith's cousin, and Keith and I served in the church together in Los Alamos as team teachers in Primary about ten years ago.  Keith is now in Austria doing a change of station for the Lab.  Yesterday, Erik showed me a Facebook post from Keith Morgan: a picture of his family holding up a sign wishing me well in the fight with cancer.  I sure appreciated that.

Yesterday we also got results of the tumor marker bloodwork and the CT scan that was done earlier in the week.  Both showed that the chemotherapy is working again.  Lesions in the lungs are smaller and fewer.  The tumor marker is down to half of what it was in December.  I am encouraged by this good news and hoping for another remission in the future.

I want to close by again thanking all those who are supporting me in this fight.  It makes it easier for me to keep a positive attitude, which according to the doctor, is a major key in the battle.  Your e-mails, text messages, phone calls, good thoughts, prayers, and even Facebook messages all the way from Austria make such a difference to me.  Thanks for all your support and things you do.  I cannot really express how much I appreciate it.

More and More Chemo

Since the last post, I've had two more chemotherapy infusions: one on March 4th and another on March 11th.  I also saw the doctor on March 4th.  I asked the doctor if he thought the ache in my side would subside and the cough would go away with the chemotherapy and he said it definitely should. He expects I'll notice a difference when this cycle is done. We're scheduled for cycles into May now. We'll do another CT scan in a few weeks.

Also on the 4th, I signed paperwork to get the gene mapping started.  That is supposed to take about two weeks so we'll know that information by the next doctor appointment. At the end of the day, we were approved for 100% funding -- that big bill is going to be covered by Medicare, the supplemental insurance, or by "Foundation Medicine".  If you're interested in the details of why we are doing this gene mapping, the website for Foundation Medicine has more details on that.  In general it will give us the targeted options for exactly the type of cancer that I have.  It's like moving from a shotgun to a rifle shot.

The chemo side effects are a bit different this time compared with a year ago.  Last time, the cancer fatigue slowly built up over the 19 separate infusions.  This time, it all came back at once after the very first infusion.  I'm just tired, with a kind of fatigue I have never experienced from just being busy.  It just never really goes away, no matter how much rest I get.  Oh well -- the time gained is worth it.

I continue to be amazed and thankful for my strong and broad support system.  Of course Kath and my kids lead that group.  Friends and family from across the country and neighbors here are also a big part of it.  A text, e-mail, phone call, drop by visit, or other thoughtful gesture means a lot and I am humbled by your support.  Thanks again.

Some Chemo

Since the last post, I've done a needle biopsy from my lung on February 10th and had two chemotherapy infusions on the 12th and the 19th.

The biopsy was done under CT so they could be sure to include one of the lesions that have now shown up in my lungs. They were there previously but had gone away during the previous rounds of chemo. They're really tiny, but lots of them. The belief is that they are the cause of the coughing I've had and likely the ache in my abdomen. The plan is to also do gene mapping on them, so we can have better options when choosing a clinical trial.

We got the pathology results of the biopsy and they are indeed the cause of the coughing and are related to the cancer. You'll recall that I've been at Stage IV since the early detection so this is really no surprise. The gene mapping is not yet done.

The chemo infusions were the same as earlier. Bloodwork was good so I got the full doses of the drugs. We had several visitors during infusion on the 12th. First the University of Utah cheerleaders came by talking to each chair with valentine wishes. There are forty chairs and beds so it took a while.  A little later a couple of room mothers (I assume) from an elementary school in West Valley City brought everyone some handmade valentines and a roll of mints or candy. Later the Spirit Team from the University brought valentines to each chair.

On the 19th, a therapy dog training handler brought her dog and went to each chair asking if we wanted to pet her dog. Most people did. At the end of the infusion they gave me an on-body-injector for a shot of neulasta. It saves an extra trip to get a 30 second shot of the drug that stimulates the bone marrow to produce more white blood cells so I'm good to go again for more chemo again in two weeks. The injector is just stick to my upper arm and 27 hours later it gives me the shot. You peel it off when it's done and throw it away. I can just imagine all the engineering that went into this gizmo with the timers, clickers, flashing lights, and completion indicators.

I really appreciate all the prayers, e-mails, texts, phone calls from so many people. It really helps me to keep a positive attitude about all this.

I'll end with the text from "Will," an elementary student who wrote the following on his valentine to me. The first letter on each line spells SUCCESS. He'll be president some day.

See your goal.
Understand the obstacles.
Create positive mental picture.
Clear your mind of all self doubts.
Embrace the challenge.
Stay on track.
Show the world you can Do It. 

Chemo Again

After ten months since the last chemo treatment, I've started having an ache in my side and have been coughing now for several weeks.  We did a CT scan in late December and, of course, the accompanying blood work.  The tumor marker was up to 47 -- higher than it was but not extremely high.  The CT scan showed some nodules in my lungs and a new growth on my left adrenal gland.  We repeated the blood work for the tumor marker this week and it is now in the 90's.  When we saw Dr. Gilcrease yesterday, we decided to restart chemotherapy infusions next week.

The doctor is pretty sure the cough and the ache in my side is related to these new nodules in the lungs. I must say that I am not looking forward to more chemo, but it's lots better than all the coughing and constant aching in my side.  We will do a few cycles (two weeks on and one off).  He said that since it worked well for me last time, he expects the same good effect again.

We're also going to do a biopsy from the lungs so they can do gene mapping, which will make sure it is not something new but is just related to the original cancer.  It will also help when we run out of options and have to go to the clinical trial route.

I know many have been praying for me and our family through all this ordeal, and we hope you will keep it up.  I know that it really helps.  Thanks for all your thoughts, prayers, texts, e-mails and all you do in our behalf.

Remission

Last Friday we had a bi-monthly visit to our oncologist, Dr. Gilcrease, at the Huntsman Cancer Institute.  It was just a blood draw for the cancer tumor marker and a short visit with the doctor.

The bloodwork results would not be back for 24 hours (which meant Monday).  Dr. Gilcrease asked the usual questions.  He reminded me to be as active as possible and said that it would be fine to schedule bloodwork again in three months and to see him again in six months.  Of course, he reminded us that if anything changes in how I feel, to schedule something sooner.  I mentioned to him that it was great to have more "chemo vacation" and he said we should call it "chemo holiday" as it implies more positivity and celebration.  As he was leaving, he said it was even okay to say that I am in remission from cancer.  I questioned him asking if it was okay to use that word and he reiterated it was okay to say.

On Monday we got the result of the bloodwork.  The CA19-9 tumor marker was 20.  This is a really good result and in the range of a person without any cancer at all.

While it may take years to truly believe you have survived cancer, this was great news.  I know that I owe a large debt of gratitude to so many family and friends for their thoughts, prayers, e-mails, text messages, visits and availability -- whenever and for whatever.  I especially thank Kath for all she has sacrificed to be my main support, for my children and grandchildren for their constant caring, and for the many friends and family members who keep track of how I'm doing.  Thanks so much -- it directly relates to my positive attitude which is one of the keys for cancer patients.

It's been a tough fourteen months, but things are definitely looking up.  Thanks again.

Two More Months

We did bloodwork and saw the doctor again last Friday. Everything is going well. The cancer blood marker was the same low number as the previous month. Dr. Gilcrease gave me two months before seeing him again. That will be a total of six months without chemo. He also urged me to stay as active as I can.

Thanks again for your prayers and support.

One Year

July 10 marks the one-year mark of learning that I have gallbladder cancer.  Major surgery, CT scans, and lots of chemo treatments have occurred in that year.  The last chemo infusion was at the end of March and I have been on "chemo-vacation" since then.  The last CT scan at the end of May showed the "spots" on the liver to be smaller in size and the tumor blood marker test was good.  We did another blood test at the end of June, and it was even lower, so we were given another month of vacation by Dr. Gilcrease, my oncologist.  He said we would do this until the marker started showing an increasing trend and then we'd do another CT scan and most likely restart chemotherapy.  We're also hopeful of being included in a clinical trial for a new drug that is showing promise in other forms of cancer.

At this one year anniversary, I am reminded of all the tender mercies along the way: a very early diagnosis because of good doctors (both in New Mexico and in Utah) who like to be thorough but not crazy in how they practice their craft; NO PAIN and no nausea while going through all this (I'm told that most people with cancer suffer lots of pain that can, at times, become very difficult to deal with); an amazing world-class facility in the Huntsman Cancer Institute only a few miles from home, staffed by a caring staff of doctors and nurses that really know their stuff; and most of all, a very large and diligent support system of family members, friends, and neighbors in our ward who constantly pray for me and my family.  As I've been reminded many times by the doctor, attitude is an important part of dealing with a cancer diagnosis.  For the most part I've been able to maintain an optimistic and positive attitude, and this is because of my strong and extended support system.  I want to acknowledge that power.  Thanks to each person who prays for me and my family, who send e-mails or text messages, or who makes that occasional phone call.  It means more than mere words can express.  Thank you again.

More Vacation

On Tuesday, May 26th, I had another CT Scan.  The last one of these was done in January, a little over four months ago.  We learned the results along with blood work results the next day during our visit with Dr. Gilcrease at the Huntsman Cancer Institute.

The latest scan showed that the spots had again reduced in size compared with that last scan.  Nothing new showed up.  The tumor marker blood test was reduced also.  In general, things had improved again over these past four months, and only two of those months involved chemotherapy.  With this good news, Dr. Gilcrease said we could go another month without any chemo infusions.  We will test my blood again in a month for the tumor marker and make another decision at that time.

With the Colorado grandkids (Beth's)

I've appreciated the time off of chemo as it has helped me to increase my energy level which, in turn, increased my general activity.  Over the past couple of weeks we traveled so see all our grandkids in Colorado and New Mexico, plus we were able to attend a wedding and reception in Idaho.  

During these visits and also at other times, I have been reminded of the many people supporting me in this.  I appreciate so much the prayers, thoughts, phone calls, text messages, and emails.  It really helps to keep my attitude positive.  Dr. Gilcrease reminded me of the importance of that positive attitude as we go through the treatments.  Thanks so much to family, friends, and neighbors for being part of my tremendous support system.

More Chemo and Positive News

We did chemo infusions numbers 17 and 18 on March 19th and 27th.  Both were pretty much like normal: access the port, take blood-work, wait for results, then get the drugs and hydration.  It takes 5 or 6 hours total.

We also saw the oncology doctor this last trip, and went through the usual questions: "how's your appetite?  Any pain? What's your activity level? Any complaints?"  To this last question my answer was that I was just "tired" from the chemo and not motivated to get up and do a lot.  It seemed like these last few infusions were worse that way, but I imagine that it was just cumulative.

He responded, "we could take a couple of months off, do another scan and blood-work for the tumor markers, and see where we are.  You've been doing well.  The chemo has been working, and I think it is fine to take a break and let you rebuild your strength."  

This kind of surprised me since the plan has always been "more chemo until it isn't working any more."  I gladly told the oncologist I'd appreciate two months off.  

I am looking forward to the break.  I'm not quite over the last infusion yet, but it will be coming in a few more days.

We also talked more about the clinical trial that he is doing regarding immunology.  We would introduce a different type of chemo drug along with a promising immunology drug that has worked in other forms of cancer.  This is done via the infusion method, so that will be more trips to the cancer center on a routine basis, like I've been doing.  The idea behind this trial drug is to "re-program" the immune system to spot the cancer cells and get rid of them.  Right now it is as if the cancer cells were in disguise; they are ignored and allowed to do their thing.  The current chemo is designed to stop any growth and, while that has been working, we also want to get rid of it as well.  The whole field of using the immune system to attack cancer is showing lots of promise, so we are really hopeful about this.

I want to let you know that I am aware of all the support through thoughts, prayers, text messages, e-mails, etc.  They do make a difference in my attitude, which I am supposed to keep positive. It sometimes brings a tear to my eye to think that people think about and support me, when their own lives are so busy.  I really do appreciate it.

"Routine" Chemo

I know it has been a while since the last update, but I don't have much new to say.  We have done another round of two chemo cycles on February 20 and February 27th (both Fridays).  Now there will be two weeks off again.

Back on January 31st (after the previous round of chemo), I got a shot to stimulate the bone marrow to produce more white blood cells -- it helps some with the red ones as well.  I think it did help to give me a little more energy and generally feel less fatigued in between.  These last two cycles of chemo knocked all that back, so right now I'm feeling pretty fatigued and not up to much.  You don't want to know how much insurance was billed for the shot -- it was expensive.

We did see the oncologist, Dr. Gilcrease, on the 20th and he is pleased with how this is going.  He says that he does not often see such positive results responding to extended chemotherapy (as is my case).  So we will continue with this routine: two weeks of chemo followed by two weeks off.

I do want to say again how much I appreciate all the positive thoughts, text messages, e-mails, Facebook messages, and prayers on our behalf.  As I consider all of that, it really does help me to stay positive.  Thanks again.  I know my family appreciates it as well.

More Chemo and a Shot

On Friday January 30^th we did another infusion of chemotherapy.  The bloodwork was good enough to get the full amount of each of the two drugs, plus of course the hydration bag that includes electrolytes and the anti-nausea drugs.  The process from the time of accessing the port to completion and removal of the port access takes about five hours.  It seemed a little faster this time, but it was probably in my imagination.

Over this time, I typically sit in a comfortable recliner, although once in a while they put me in a bed.  (They assure us that it is all randomly done.)  I prefer the chair but the bed is more private if the doctor comes.  The recliners are in what they call a pod and there are 4 chairs per pod and eight total pods in the infusion clinic.  So there are 30 to 40 people getting infusion at a time counting the beds.  I use my smartphone to access the internet looking at the news, read e-mail, take a nap, eat something that we brought or maybe something that Kath gets from the cafeteria upstairs.  Kath always accompanies me and sometimes goes to the library or to the pharmacy to get prescription refills.

The infusion nurses are always very careful to verify that the bags of medicine are the ones issued to me by the pharmacy.  I repeat my name and birthdate lots of times—every time a bag is changed—and they match my wristband to the barcode on the bag with scanners.  I appreciate the thoroughness, but it gets a little annoying sometimes.

As long as the chemo keeps working, this routine will be repeated—two Fridays doing infusion and then two Fridays off.  I look forward to the breaks which I am just now starting again.  The infusions seem to bring on the "cancer fatigue."  I know I have talked about that before, but I probably haven't explained it very well.  Here's a definition I found from the Cleveland Clinic:

Fatigue can be confused with tiredness.  Everyone gets tired.  In fact, it is an expected feeling after certain activities or at the end of the day.  Usually, we know why we're tired and a good night's sleep will solve the problem.  Fatigue is less precise, less cause-and-effect.  Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness, not relieved by sleep.  It can be acute (lasting a month of less) or chronic (lasting from 1 month to 6 months or longer).  Fatigue can have a profound negative impact on a person's ability to function and quality of life.  Cancer-related fatigue (CRF - sometimes simply called "cancer fatigue") is one of the most common side effects of cancer and its treatments.  It is often described as "paralyzing."  Usually, it comes on suddenly, does not result from activity or exertion, and is not relieved by rest of sleep.  It may not end -- even when treatment is complete.

On Saturday afternoon, we made another trip to the Huntsman Clinic to get a shot.  The shot is “neulasta” and helps stimulate the bone marrow to produce more white blood cells.  I have been typically on the low side in this blood test and it has reduced the chemo dosage at times, so we’re trying to elevate the white blood cells so I can continue with treatment.  So far I don't feel any significant negative side effects from the shot, which is a relief.

The procedure for the shot is short; it took longer to walk from the car to the clinic than it took to take vitals and get the shot.  But the insurance company demands that it done at the hospital if they are to pay for this several thousand dollar injection.

Speaking of insurance, I am covered through my New Mexico retirement.  I looked at the insurance summary the other day and it paid well over $200K in 2014, so it has been a real blessing through all this testing, surgeries, scanning and chemotherapy.  This is not a cheap kind of medical problem, so my advice to all of you is two-fold: take care of your health to prevent all you can, and keep your insurance.

I continue to appreciate all of your thoughts, visits, e-mails, text messages, prayers, etc.  I have an amazing support system that helps me keep a more positive attitude.  Yes, of course there are some brief times when I think of how bad this is and might become, but those are rare.  I just keep thinking of all the support, and because of that I can and will be part of that small percentage that beats this type of cancer.  Thanks again.

Good News

Back on January 16th, we did the periodic bloodwork and CT scan to see how things are progressing.  During the chemo infusion on the 23rd, we saw the doctor and got the results.  The CT scan showed smaller lesions and fewer of them and the blood maker was down.  This means that the chemo is still working.  The doctor said that he doesn't often see these kinds of positive results after the preliminary rounds of chemo, so we will be continuing with more chemo until it is no longer working.  We will also put off the clinical trial of immunology until at least summer.

Because my white blood counts continue to be low, we will also try an injection of neulasta the day after chemo.  This means another trip to the Huntsman Center since the insurance requires that it be administered at the clinic before they will pay. These injections sometimes cause some "bone pain", but there are no reactions in others so I am hoping that it is pretty uneventful for me.

I also saw the primary care doctor earlier this week regarding the diabetes.  After looking at results of the A1C test, he said I could again reduce the frequent glucose testing to a couple of times per week.  Things are well controlled by the pills and by self regulating the amount of carbohydrates that I eat.  I am blessed that this is easing, as I feel like I have enough to worry about without the constant reminder of testing and insulin injections.

The oncologist continues to emphasize the three "A's"--  Appetite, Activity and Attitude.  Keep all three of these in good shape and the outcomes will be better.  I continue to struggle with the activity part.  The chemo fatigue is hard to keep motivated to overcome, but I try.  Your thoughts and prayers are an important part of keeping the "attitude" on a positive note.  Thanks for all you do.  It's kind of amazing to think of all those praying for me and sending good thoughts.  I'll continue to do my best.  Thanks again.

The Whole Enchilada

Yesterday was another chemotherapy infusion at the Huntsman Cancer Institute.  After we checked in at 7:00 am, we were escorted to a bed located in one of the separate rooms of the Infusion Center.  We had been advised in the beginning that this could occur, but after numerous infusions in the various chairs it felt like a surprise.  They assured us that it was just a random choice and nothing to worry about.  After doing it this way today, I prefer a reclining chair.

The port was accessed without any problem and when the bloodwork results came back, it showed the blood counts being in normal range and I could take the full prescribed chemo drugs.  That was the first time that happened in several months.  I guess forgoing one of the chemo drugs last week resulted in my blood being back to strong enough for chemo.  So I got the whole enchilada today instead of a "less than full strength dosage."  The downside is that after being home just a few hours, I could already tell that the "chemo fatigue" will be a little worse this time.  Guess everything has its trade-offs.

Also saw the oncologist yesterday and reported the usual things: no pain, no swelling of hands and feet, just fatigue.  We scheduled the next CT scan in a couple of weeks.  We'll go over the results of the scan when I see him again at the end of the month.  He did say that the latest blood marker test was down from the previous test again, but it is hard to say it is really a trend with so few data points.

In summary, I am doing as well as expected.  Lots of that is due to my awesome support system.  Thanks for making it easier to stay positive.  I know that all the thoughts, prayers, e-mails, phone calls, text messages really help.  I really appreciate it.  Love you.

More Chemo and Other Things

I know it has been a while since the last update. And I guess I should not be assuming that the infusions are so routine that it isn't a bit interesting to anyone. Of course there are other things about what's happening, and since we didn't get Christmas cards sent and no newsletter written, maybe this blog can be used instead.

We visited the oncologist, Dr. Gilcrease, and his nurse, Jamie, on December 5th before a scheduled chemotherapy infusion.  He asked the usual questions. Here are my answers: no pain; no throwing up; yes, trying to be active but still have chemo fatigue; weight staying the same; decent appetite.  Primary care doctor is managing the blood glucose; I'm doing that with meds and twice per day blood tests -- no insulin.  Dr. Gilcrease did the usual listening to my heart, looking down my throat, and reviewing vitals.  He advised us that he wanted to do another blood marker test and a CT scan in January.  He again strongly encouraged more activity -- twice as much would be good.  Because my blood counts are low, and I don't produce the red and white cells as quickly as someone not on chemo, I am supposed to really avoid sick people if possible.  We're also on-line to participate in the clinical trial to use a drug to "re-program" my immune system so that it will stop overlooking the cancer cells and kill them. The cost to us is zero to participate.  No, the drug is not just a prescribed pill, it is given by infusion --- so no vacation from driving to the Huntsman Cancer Institute.

After a break from chemo for two Fridays, we had another infusion today. This will be the pattern-two consecutive Fridays for infusion followed by two consecutive Fridays of NO infusion (yahoo).

The infusion today (Dec. 26) was again reduced in dosage to compensate for another low white blood cell count.  The white blood count had increased some, but not enough -- so today's infusion only had one chemo drug instead of the usual two. The drive there was a little snowy, but was pretty well cleaned off. Didn't need the 4wheel drive pickup. 

During the treatment,  I got a phone call from my friend Mac from Los Alamos.  While I remain mostly upbeat and positive, the call made it even better. I marvel at the breadth of my support system and how caring and thoughtful they are.  They do stuff.  We had many Secret Santa treats and gifts, lots of cards, texts, e-mails, thoughts and prayers.  While words of thank you seem inadequate, please know how much they are appreciated.

Last week Kath and I spent the weekend at my parents' home in Idaho. We joined together with my siblings and their spouses to go through things in preparation for putting the home on the market in a few months when the probate process is finalized. Some things went to the landfill, some were donated to Deseret Industries, and some went to descendants. Kind of an emotional and hard process.

We had a nice Christmas. Joined Julie and Dee to see their new grandson and Skype with their missionaries in Chile and Arkansas.  Julie also made a luscious Christmas dinner and of course we visited. Thanks Julie and Dee and family.

That pretty much catches you up. Again, thanks for your support and the good things you all do. In the beginning of this journey, the doctor said there are two important things to do. First, stay as active as you possibly can. Think of yourself as a healthy person and do those things. And secondly, keep a positive attitude.  Your support helps a lot with that one. Thanks.