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.

Chemo Begins Again

Sorry for not doing an update for a while.  A few things have happened that may be of interest to you, so I'll share them now.

On November 17th, I had a nice visit from two good friends from Los Alamos.  Chief Doug "Mac" MacDonald was the former Fire Chief of Los Alamos County and Chief Wayne Torpy, the former Police Chief.  Both of these gentlemen were in those positions when I was County Administrator, and was blessed for them to always "have my back" during that time.  They are among the great ones and I am so fortunate to have them as friends.  They flew in on Sunday night and spent a big part of Monday visiting and then flew back to New Mexico on Tuesday morning. It was a good day, they lifted my spirits and I've thought of their visit many times.  Thanks guys.  I appreciate it more than words can say.

A couple days later Kath, Ray and I went to a performance at Energy Solutions Arena in Salt Lake of the Trans Siberian Orchestra.  They performed most of their classic Christmas songs and a new program.  We had bought the tickets from Groupon so got a good deal and the seats were pretty good as well.  Got us out of the house and following the Doctor's advice to think of myself as a "healthy person" and do those things. 

We rode with Julie and Dee to American Fork and had a nice lunch with Marc and Ruth.  We talked about scheduling a trip to Idaho in a few weeks as long as the weather cooperates.

For Thanksgiving we went to Julie and Dee's home.  A very nice dinner prepared mainly by Julie and assisted by Aaron.  I'm sure Dee was also involved.  It was nice to visit with family.  Steven was there with his wife Danielle; they were expecting a new baby the next day. (He came and is named Connor, happy and healthy).  Sarah and her husband Jordan were also there.

The next day on the 28th, we had chemo again.  The bloodwork still showed kind of low in the ANC reading (a function of white blood cells).  It had recovered some with the longer break, but was below the minimum "ideal" range.  The decision was made again to decrease the chemo dosage to 80% of what I had gotten initially.  It still takes just as long to drip in, so we were there for a lot of the day on Friday.  I've been doing pretty good since then; the anti-nausea medication is also a steroid, so it gives me strength.  We even went on a short walk today around the block.  The steroid is a mixed blessing: it gives me temporary strength, but it also causes blood sugar to go up quite a lot.

As far as diabetes goes, we are just relying on the pills to control the blood sugar.  Readings are taken twice each day, first before breakfast and a second test before bedtime (a couple of hours after eating).  So far things are pretty well controlled with just the pills.  I haven't done any insulin for about three weeks now.

I went to sacrament meeting today, but went home afterward.  It is a pretty humbling experience to have someone giving the opening prayer to mention me and my family by name requesting blessings on our behalf. I know there are lots of others who do that individually each day and I feel strength from those prayers and good thoughts, e-mails, text messages, and phone calls coming our way.  I do appreciate those more than words can adequately describe.  I have an awesome support system, starting with Kath and our kids and extending a long way. Thanks so much.

Diabetes Update, Chemotherapy Update, and Jazz vs. Mavs

During the week, I visited my Primary Care Physician with questions about the diabetes.  He directed me to discontinue the monitoring before every meal and just take the blood glucose test in the morning before breakfast and once more at bedtime, a few hours after eating.  I don't have to take insulin via shot, so we are just relying on the medication via pills to control the excess.

That has been very nice.  If the readings are consistently over the 200 level then I need to start another pill.  They have been lower than that, so things are going better in that department.

We did another infusion of chemotherapy on Friday, November 7th.  Because the ANC reading was still pretty low, the dosage was again reduced.  With that reduction, I don't think I am as wiped out as usual with the chemo.  Bigger break now until the next one, and I am looking forward to that longer break.

The ANC reading is based mainly on white blood cell count, so my bone marrow needs to rejuvenate so the blood count readings can improve.  I asked about what I can do to stimulate this and there are not many answers.  They suggest activity but it is unproven as being related.

That same night, Ray and I went to an NBA game between the Utah Jazz and our favorite team, the Dallas Mavericks.  The Mavs won and we enjoyed doing it.  I was pretty tired after a full day but it was worth it.  I kept hearing my doctor's words: "continue to act like a healthy person."

Harder to do than it is to say.  I am trying my best to work through all the tiredness.  Kath and Ray do their best to encourage me on this stuff.  I appreciate them and all the others who support in any way.  It means a great deal.

CT Scan Results and More Infusions

On Friday, October 31st, we received the results of the CT Scan and blood-work that was taken nearly two weeks ago.  In basic terms, the CT scan showed that the chemotherapy was effective.  The lesions (just think of these as "things") are fewer in numbers and smaller in size.  They started in the baseline tests and from the surgery pathology as all being sub-centimeter so they are pretty small.  He showed us some on the screen and they are just tiny white blips. The CT scan trumps the blood-work which was higher than the baseline, but his comment was that you could take that an hour later and it would be different.  After the doctor appointment we did infusion of chemotherapy, but the chemo drugs were reduced in strength somewhat so my bone marrow can produce more white blood cells.  That reading was getting to be marginal for doing more chemo.

As long as the chemo is working, we will continue on this course but with longer periods between to recover.  I believe it will be two weekly infusions followed by two weeks off then repeat.  The doctor continues to re-iterate that I will be in the immunology clinical trial. 

Generally I feel okay, just tired all the time and not much desire to do much more than the minimum.  I need to break that and make myself get up and walk or something.  They keep saying that will help reduce the fatigue.  That's my goal this week.  I know it will help boost my attitude as well.

I continue to do the blood glucose testing three times each day and taking insulin based on a sliding scale of what the blood glucose reading is.  I feel a great deal of empathy for people who have had to do this a long time.  It is a big nuisance and you have to be constantly thinking of the right things to eat.  Thanks to Kath for working so diligently on this.  I know it's hard.

Thanks to everyone for your support, thoughts and prayers.  They really are appreciated and really do help.  We went to sacrament meeting today and several people there express their well wishes as well -- nice reminder of how big our support system really is.  I do appreciate it.

Another Infusion and Testing

Last Friday, October 17, was another infusion day.  We also saw the doctor.  My question to him based on his comments a week ago was, "If the baseline CT Scan and bloodwork did not really show any cancer, and if the upcoming follow-up (and post-chemo) CT Scan and bloodwork show the same results, then how do we know that chemo is even working or doing anything?"  He explained that this was the whole essence of what they do at the Huntsman Cancer Institute is to offer prescribed treatments at the earliest possible time, which then extends the life of cancer patients.  He acknowledged that the only evidence that I even have cancer is from the surgeries and associated pathology reports.

He also said that we could delay further infusions until future tests indicate more chemo or if I start feeling bad.  The choice of course is ours.  We do plan on doing the clinical trial mentioned in earlier posts.  I will see him again on Halloween and a decision will be made.

On Monday the 20th, we had the follow-up CT scan and bloodwork that will look for cancer markers in the blood.  We'll talk about results at the next appointment with the doctor.

I continue to monitor blood glucose levels and do the insulin shots plus metformin pills.  It kind of spiked right after the chemo because of the steroids to keep me from being nauseated.  I've passed the worst part, and now I'm back again to mostly levels mostly before 200 just prior to meals.  I know that is high for a normal person but, considering I had an 800+ reading when I was first diagnosed with diabetes a few weeks ago, this is a huge improvement.

The good news: at least a two week break from chemo!

The Last Two Weeks

Yesterday was the first day of the third cycle of chemotherapy.  That means I had an infusion of chemo and will have another next Friday. This was coming off a two week break from chemo.

I'd like to say that it was a peaceful two weeks, but it was filled with the stress of learning to deal with blood glucose issues and getting blood sugar levels stabilized to more reasonable ranges.  I check my blood three times a day prior to eating.  Then I inject insulin on a sliding scale based on the readings.  Additionally, I am now taking medication for Type 2 diabetes with the morning meal and the evening one.  Finally diet has changed to limit portion size and reduce carbohydrate intake.  I need to always be thinking with the filter of diabetes.  Needless to say, all of this is still sinking in and are major changes in lifestyle.  It almost rivals the cancer diagnosis, except for knowing that it can be controlled with highly proven methods. Also there is a clear hope that with diet and exercise I can roll-back to pre-diabetes and go off meds and insulin.

We got some additional information regarding my treatment plan yesterday during the infusion visit.  We will do the CT Scan and blood work soon after next week's infusion.  Then there will be more chemo -- possibly  indefinitely -- just with longer breaks between the cycles.  So I have infusions scheduled now for Oct 31 and Nov 7th that had not been scheduled previously.

The rest of the news is that I will be scheduled for the clinical trial which will be conducted at Huntsman Cancer Institute.  This trial treats the immune system and reprograms it so it attacks the cancer cells instead of ignoring them.  It has shown promising results in other types of cancer and will be tried here once approvals are accomplished in one or two months.  Of course i would have to qualify individually -- not being sick with colds, flu etc.  I don't know all of what could keep me from qualifying, but I do know that I have to be off of chemo for a month before I could begin the trial.  There is more to learn about this, but I am encouraged with what we know so far.

I guess I have been kind of down in terms of attitude this past two weeks.  The double whammy of Cancer and now Diabetes is tough when they are so close together.  The constant love and support of Kath has helped.  Ray and his ability to provide comic relief in these hard times, and calls from Beth and Alex mean a great deal.  I know I've got lots of supporters from siblings to friends.  The ward has provided meals around chemo days so there have been new, delicious tastes in our lives.  I know that my name and my family's names are on the rolls of many temples.  I will never be able to adequately express my appreciation to my large support system, but I do want to thank those who are part it for all you do.

New Side Effect

Since the last update, it seems that I have developed a new side effect of the chemotherapy.  I refer to it as chemo-induced diabetes.  I have been urinating and drinking like crazy since the infusion on Sept 19th.  When they took the bloodwork the blood glucose was off the chart -- in dangerous range.  They asked us to come to Acute Care at the Huntsman Cancer Center.  Worked all afternoon on getting the readings down and told to come back again before infusion scheduled for the 26th.  It did come down quite a bit, but still very high and needs to come down more if we can.  

Turns out that one of the anti-nausea meds they give me is a steroid and causes high blood sugar.  Without it I will most likely start vomiting and cause all kinds of electrolyte imbalances that will really be hard to get back under control.  So we continue with the steroid and now take some pills to control blood sugar. Based on the still high readings, we will start insulin injections based upon a sliding scale.  We don't want long term problems in kidneys and eye-sight.  I am really tired from all this and don't want to do much of anything.

We still did the chemo infusion on the 26th.  It went as usual, so I won't go into detail about it again.  We met a very nice dietician who explained how to change eating habits when you have diabetes.  We've spent the weekend trying to follow the plans and it will be a pretty big lifestyle change.  The key seems to be portion control -- especially for carbohydrates.

My hope is that once chemo is done, things will again get into the standard range and I can get off the pills and just exercise and eat better.  Trying to stay positive and full of hope.

More Infusion

On Friday September 19th, we did the third infusion of chemotherapy.  Same drill: access the port and take blood for testing.  Once the go-ahead is given we start the first 1000 ml of hydration dripping fast, but it still takes an hour. Some anti-nausea med is dripped in.   First bag of chemotherapy med.  Second bag containing a different chemo drug.  Last bag of hydration.  I visit the restroom with the IV pole at least three times during all this dripping. The port is de-accessed and we are free to go.  

Oh, and I should mention that Kath bought me a cinnamon roll from the restaurant at the Huntsman Cancer Institute.  It was yummy, but I've had better.

This time Dr. Gilcrease visited us at the chair.  Had his own questions about how we're doing.  That always throws me, because how do you answer this one when you have cancer?  My answer was pretty well, for someone with cancer.  He listened to my heart and lungs and answered our questions.  He went through the detailed results of the base-line CT scan and allayed fears that it was already showing up elsewhere.  Kath asked him about a new therapy stimulating the immune system to fight cancer cells.  That will be the emphasis of a clinical trial that will start within two months and we will be invited to participate.  It is promising -- but is still unproven for my type of cancer. We're excited and I keep reminding myself that even with bad statistics, there has to be some who make up those low percentages of survivors.

The ward brings a meal on the day before chemo and on chemo day.  We have lots of kind neighbors providing this food that is too much to eat all at once, so there are leftovers.  Thanks, neighbors and friends for being part of our support team.

Today we participated in the re-dedication of the Ogden Temple.  It was a nice spiritual experience and we had the extra blessing of being with Julie, Dee and Aaron in the temple (an extension of the temple in our own stake center).

I also got the first interview accomplished with our bishop to renew my temple recommend that expires at the end of the month.  He's a really great man and I like him a lot. The renewal should be complete Tuesday evening.

I'm staying positive, but feeling tired.  I am doing all I can to stay active and so far have been successful.  We take walks around the block, sometimes in the dark, but it all counts.  It is great to have so many people who are part of a large team supporting me and my family in this hard time.  Thanks so much for that support.  I cannot adequately express how much it is appreciated.

Normal Life, Kind Of

This update is not very much about my health, but is about our attempt to lead a normal life.  The oncology doctor and nurse urged us to live as normally as possible while going through this chemo.  Stay as active as you can. Keep as upbeat as possible and don't obsess about the longer term negatives that come with a cancer diagnosis.

With that in mind, Kath and I decided to honor our commitment made a year ago to work the CPSE (Center for Public Safety Excellence) vendor booth at the ICMA Annual Conference in Charlotte,  North Carolina. We have done this the prior three years with Paul Brooks, the CPSE Executive Director, and Cliff Jones, former CPSE Board Member and retired Fire Chief from Tempe, Arizona.

Basically we work together to provide City and County Managers and Assistants with information about how the non-profit CPSE programs can help make their Fire Department better by detecting issues before they show up in a real event. They also improve accountability to the citizens they serve. The accountability and transparency issues for local governments are current hot topics. And with Fire Department's significant budgets, a City Manager needs to be paying attention.

Anyway, we flew East on Saturday and met up with Paul the next day to set up the booth before the start of refreshments for attendees at 5:00 pm. By the start time, Cliff joined us and we were ready to go.

We talked to quite a few people, got some promising contacts, and visited during the breaks.  We did this pretty much all day on Monday and Tuesday and closed the booth on Tuesday at 2:00 pm when the exhibit hall closed.  the other guys were able to leave for home later that day, but our flight was not until the following day (Wednesday).

Some other highlights:  

We went to a Sacrament and Testimony meeting with the BYU Alumni group on Sunday morning  It is always a highlight to hear for lots of successful people.  Not a one of them talked about their accomplishments, but nearly everyone talked about how they used the gospel in their workplace.  Several talked about how they served missions in North Carolina (wonder if any knew my niece Meredith!).

We went to dinner as a group on Sunday and Monday evening.  One was to the Black Finn and the other was to 5 Church.  Both had lots of selection, good wait staff, and good food.

On Wednesday morning, Kath and I went to the NASCAR Hall of Fame.  North Carolina is NASCAR country full of fans.  We are not followers and don't have favorite drivers but it was interesting to see the history over the 70 years since the bootleggers drove the country roads evading the law.

Came home late on Wednesday.  A good trip and I'm glad it worked out so we could go.

Second Chemo Infusion

During the week between the first and second Chemotherapy Infusions the side effects were as follows (these probably differ from the stereotypes you've seen on TV or in the movies):  

Nausea:  this is very well controlled in advance of symptoms.  In fact before chemo began we met with a pharmacist from the Huntsman Cancer Institute (HCI). He’s part of the support team assigned to me, so he is familiar with the case, the protocols to be followed, etc.  He said that if I were to ever actually throw-up, then he wasn’t doing his job and he wanted to know about it.  The days and nights of hugging the white throne should never occur in my case.  In actual experience, this has proven quite accurate.  I have anti-nausea meds  administered via IV during the infusion and specific meds for day 2, 3 and 4 after infusion, with two other meds as needed.

Fatigue: I have had some increased fatigue since the first Infusion.  I just don’t have as much desire to get up and be active.  At times I wonder if this is partly a mental thing, since the fatigue is not from over-doing activity.  But then again, I am getting some pretty powerful “poisons” introduced to my system and my body is dealing with all that.  It reminds me of when I had some really bad colitis flare-ups losing a lot of weight with the constant diarrhea.  I remember thinking about just getting out of a chair to go across the room, and saying to myself that I wondered if I could actually do it.  Anyway I am doing my best to stay active as it helps with attitude and keeping bodily functions going.  I’m also still recovering from the major liver surgery that has been “not quite” as normal as we all hope for, so the fatigue is maybe larger than anticipated.  

Hair loss:  None that I have noticed.  They said it might thin a bit, but will not go to the fashionable skin-head look.  Ray says that if we end up going there, he will go too in support of me (but he’s keeping his beard).

Weight loss:  Lost 12 pounds since the day of surgery on August 1st.

On Friday, September 5th, known as Cycle 1, Day 8 we went to the HCI for the Second Chemotherapy Infusion.  Applied the lidocaine cream to the port site before we left home so the skin at the port site was numb by the time it was accessed.  We had an Asian nurse and there were some very limited language issues, but she was very professional in every way.  Again we started with blood work to determine if I was well enough to have chemo that day, start hydration, get the blood results back and if indeed well enough, then two types of nausea meds (these are fairly small bags), then chemo number one and chemo number two.  This is followed by a second large bag of hydration.   Six hours infusion time, and a quick check of the port site for infection of the wound when it was placed, plus travel time equals nearly 8 total hours since leaving home.  Yes, it ends up being a whole day.

During the first Oncology visit, the Doctors and Nurses really encouraged living your life during Chemo as normally as possible.  This week there is no Chemo scheduled, so Kath and I will honor a commitment I made a year ago to help with the vendor booth for Center for Public Safety Excellence at the ICMA Conference in Charlotte, North Carolina.  This is the organization that I have been with for several years that offers accreditation programs for Fire Departments and credentials for Fire Professionals. The other guys working the booth are retired Fire Chiefs and personal friends who know of my health issues, so if I need to sit down or take a shorter shift, it will not be a big deal.  We leave on Saturday and get back the following Wednesday, September 17th.

Over this Sunday, at the suggestion of my sister Julie, my family and others had a special fast for me and my immediate family.  I am deeply touched by the outpouring of love, support and concern for us during this challenging time and I want to thank you for that.  It really helps lift my spirits and keep up the positive attitude.  I know that this is a major key to recovery and your thoughts, prayers and simple acts of kindness and service really do help. I thank you from the bottom of my heart.

There may not be an update for a while, since there’s no infusion coming up.  Stay tuned, there will be more.  Again, thanks for your interest and support.

Intravenous Port Placement and First Chemo Infusion

On August 22nd we went to the Hunstman Cancer Institute (HCI) for the placement of a port in my upper chest just below the collar bone on the right side.  The port is under the skin and provides direct access to a major vein as it leaves the neck and returns to the heart and lungs.  It will be used to take blood tests and to infuse fluids and chemotherapy drugs.  (It works both on an “in” and “out” basis.)  I would just have this “bump” under the skin that is used to find and access the port when needed. The Oncology nurse strongly recommended taking this option instead of having a new intravenous vein-finding adventure every time.  

The port placement procedure is done under mild sedation using a fluoroscope to precisely identify and place the port correctly.  It took longer to fill out all the questions of past surgeries, medications, etc. than to actually do the job.  I had very little pain during or after the procedure.  After a short wait while the sedation wore off, we came back home.

On August 28th we again returned to HCI for a CT abdominal scan.  This was to establish a baseline for future scans after each round of chemotherapy or other therapy that may be recommended.  It was pretty routine in nature, except that they did not use the port because only a full-fledged nurse can access it, not a radiology tech.  They had to infuse iodine during the scan and it took two pokes to find a vein.

August 29th was my first Chemotherapy Infusion.  Again it was at the HCI.  We are getting to know the road there pretty well and will be making many future trips.  The Infusion Center is a large glass walled clinic arranged in four chair pods.  I think there are eight pods and four additional private bed areas for those who may need them.  Besides comfortable infusion chairs, TV with cable access, and a DVD player, each pod has its own nurse, so you get to know her pretty well. Our nurse was Britany and she was very good at answering questions in a professional and friendly way.

A separate nurse that floats among the pods accessed the port.  It was kind of a sharp poke but we were given some lidocaine cream to numb the area for the next time.  They first took blood samples to determine if I was healthy enough for chemo that day.  This will be done each time and the total procedure will follow the same routine each time for these six infusions spread over a nine week period.  While the blood work was being done, they gave me a liter of hydration fluid—mainly saline with electolytes.  The flow of the IV is not a slow drip.  It is still a drip, but only slightly slower than a full stream.  When the blood work came back and said I was a “go” for the day, the hydration was done and I was given some very effective anti-nausea drugs via the IV.  Then a bag of the first chemo drug, then a second bag of the second chemo drugs.  They do those separately to be able to quickly determine exactly what may cause an allergic reaction of some kind.  They leave nothing to chance.  Once the two chemo drugs were done, than another bag of hydration.  Total time was about six and a half hours of dripping time.  I had no pain or other type of reaction.  They de-accessed the port by withdrawing the needle (painless) and putting a band-aid on it that could come off in a couple of hours.  Came home with three anti-nausea prescriptions, that leave nothing to chance.  They are extremely effective at preventing nausea rather than trying to treat it after it is going strong.  I’ve thought quite a few times of when the pharmacist visited us and said that “if you ever actually vomit during this, we are not doing our job and want to know”.  I am on Day four of this cycle and so far, no vomiting. Next day for infusion is Friday Sept 5th. Then a week off.

Perhaps you would be interested in my some of my thoughts while sitting there during the infusion session.  The HCI sits high on the hill above the University Hospital and is still considered University of Utah property.  Out that large glass wall of windows you can see lots of the campus and all the way across the Salt Lake Valley.  You can see the Church Office Building and the spires of the temple, out to the SLC Airport, to the South and West where the Rio-Tinto (Bingham) Copper Mine is and all kinds of other things.

While just looking at that view, and thinking of how we are hoping for a miracle with these problems, I thought of how my heritage is full of miracles.  John Pack was in the first company of pioneers with Brigham Young.  He is depicted in bronze on the “This is the Place” monument which I could not see, but is not too far away from the HCI.  He started a school that was the predecessor of the University of Utah.  So we have a pretty strong connection to this location where I have my treatments.  We are also direct descendants of survivors of the Martin Handcart Company.  I don’t have to detail those miracles.  I had a few miracles in my career in being able to complete long standing dream projects that had languished for sometimes decades but had never actually been initiated. I have experienced miracles in my personal life with previous health issues.  It was through faith and support of my family that I pulled through those times (and with the help of mom’s cinnamon rolls).  So while we are hoping for another miracle in today’s challenge, I think the chances are really good.  It is in our heritage.

Thanks for all your prayers, love and support.  I have a great team helping both my family and me in this challenging time.

Surgery Follow-up and Oncology Visit

Another update from Max.

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We sent to the Surgery Follow-up appointment at University of Utah Hospital.  The main thing was to review the incision and take out the 36 staples.  They were starting to irritate the skin and always felt like they were hindering my movements, like moving from my back to my side while laying in bed going to sleep.  Not a big deal, but kind of annoying.  The incision looks good considering the number of days it's been since the surgery, and I am not taking any narcotic pain medicine.  Just Tylenol or Ibuprofen on an occasional basis since there is no real constant pain.  Anyway, everything was good so staples were pulled.  Kind of a pinch kind of feeling that quickly subsided.

We went to the Oncologist for the initial consult.  His name is Dr. Gilcrease and he is very patient in answering every question about the planned procedures, schedules, support systems, etc. 

Chemotherapy will start with the first infusion scheduled for August 29th.  There will be three cycles (9 weeks total) so we’ll be done sometime in mid-October.  A cycle by infusion is composed as follows: infusion on the first week, one week later the second infusion, and the third week off.  Symptoms will be nausea, some hair loss (but not all of it), and some fatigue.  The nausea should be well managed with anti-nausea medicine, so if I should ever throw-up, they aren’t doing their job and will adjust the medication.  Fatigue will exist, but it won’t be that bad if I remain active and doing things every day.  They will implant a “port” to administer the chemo as well as to take blood for testing, and I am supposed to get a CT-scan that will be used as a baseline.

After the nine weeks we will do CT scan again and some other blood work to determine how well the chemo is working.  Adjustments could be made, future schedules determined, other therapy tried, etc.

He said the cancer probably has been going for about a year, although it is impossible to say with total confidence.  It is a fairly aggressive cancer, but not nearly as bad as pancreatic cancer for example.  It moved from the gallbladder through the blood to the liver.  

It is unlikely that chemotherapy or any other treatments will get me to the point of saying I am “cancer-free”.  That’s kind of hard to hear and think about, but the things that can make the biggest difference are keeping a hopeful, positive attitude and staying as active and strong as possible throughout.  

We’re looking for a miracle.  I’ve had some miracles already in terms of my life’s health challenges.  One of the colitis flares I had when I was in college took me down to 140 pounds; I was extremely weak.  Faith and prayers and the support from others is what pulled me out of that one and allowed me to have a good life.  So another miracle can certainly come.

Anyway, thanks so much for your support.  It touches my heart to know I have a very strong team that will help with this challenge.

Life Upside Down

My parents have asked that I maintain a blog to keep family and friends updated with the latest news on my dad, Max.  I suspect these posts will be in different voices: my dad's, when he is able, but also my mom's and mine (Beth's); even if it looks like I am the author, it may be that I am simply posting on my parents' behalf.  

This first post is from Max himself.

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So we’re starting this blog to give an update on my situation and latest challenge to me, Max Baker.  First some background so it makes more sense to those who don’t know all my history.

While I am now 63 years old, I have had lots of health struggles for more than 50 years.  I was diagnosed with thyroid issues when I was twelve and had a thyroidectomy at nineteen.  At age 20 , I was diagnosed with ulcerative colitis.  About 20 years ago I was diagnosed with liver problems as a result of the colitis.  Needless to say, with these things going on, I have been monitoring for symptoms and doing periodic tests for a long time.  I was pretty successful at keeping “health issues” at the back of my mind and was able to lead a pretty normal life except for the monitoring tests and taking my daily pills.

We moved to Utah about three years ago to assist with the caregiving for my Mom and Dad.  With that change I continued to see my Los Alamos, NM doctors for all the monitoring.  It was easy to just schedule appointments with those trusted doctors and combine it with trips to see my son Alex and his family.  About a year ago, during one of those visits my doctor said, “I consider it a huge compliment that you travel from where you live to see me for things, but health care is best provided locally so I urge you to find doctors you can trust near your home in Utah.”  After a couple of false starts with doctors that were more interested in fee than actually providing good healthcare, I found some doctors that I felt good about.

My new gastroenterologist reviewed my records and suggested a couple of tests for him to establish his own baseline for my care in the areas with the long history—colitis and liver issues.  It seemed pretty routine stuff for me since both tests had been done several times before.  One of the tests came back with some uncertainty about a new thing—my gallbladder, so more tests were ordered to bring clarity to what that problem may be.  That last test was done in late June.  All this time I had no symptoms of gallbladder issues—no pain from gallstones, no jaundice, etc.  I was a little surprised to hear the results and the recommendation to have my gallbladder removed.  It was by no means an emergency, but it was still urgent.  There was no reason to wait since a person don’t really need a gallbladder and it can be a simple and routine outpatient procedure. I was told I’d immediately feel better and that recovery would be a very short four weeks total.

That surgery was on July 8, 2014. I did have gallstones and the gallbladder itself looked kind of terrible. “Are you sure you had no symptoms?  Hard to see how it was in that condition and you had no symptoms.”  

A couple of days later, I get an after office hours phone call from the surgeon.  “The pathology is done on what was removed and you have gallbladder cancer.  We’ll take your case to the Tumor Review Board for a final recommendation on the next steps.”  

At the surgical follow-up on July 21st, that recommendation was to have a liver resection to take out that part of the liver that had been touching the gallbladder.  

I chose to go to the liver surgeon at the University of Utah rather than going to the gallbladder surgeon’s college friend at Intermountain Healthcare.  Surgery consult was scheduled with Dr. Kim on July 28th at University Hospital (less than 3 weeks from gallbladder surgery).  During that consult, the Dr. Kim explained his plan to do the liver resection, remove adjacent lymph nodes, and probably remove a section of the common bile duct and reconstruct a new one.  Surgery would take 4 to 6 hours so it was obvious that it was pretty intense stuff.  Schedule for liver surgery was that Friday, August 1st.  I was the first case of that day so we were at the hospital at 6:00 am for surgery at 7:30.

After the first hour, Dr. Kim came to talk with Kath.  He quickly allayed her worst fears by saying that I was stable and in recovery.  They found spots on my liver meaning that it was Stage 4 gallbladder cancer (meaning it has spread from the origin to at least one other organ).  Knowing that it was virtually impossible to remove every possible cancer cell, the protocol now became to go to chemotherapy treatment rather than insulting the liver so much that a real risk of total liver failure would occur.

I’m now mending from liver surgery and getting stronger so that I can do chemotherapy.  The scar is shaped like a hockey stick going down from near the base of my sternum then turning across my belly to my right side. Total length is about 15 inches, so I’ve been advised to think up some big story I can tell people about the scar.  Suggestions have included: it’s from a shark bite while surfing off the coast of Borneo, or from a knife fight while defending a buddy in a biker bar.  Anyway it is pretty impressive. Any more ideas are welcome!

To add to this crazy story, my Mother passed away while I was still in the hospital at age 91 in Idaho.  She was a wonderful lady—one of the noble and great ones.  I missed her funeral because I was not strong enough for a four-hour car trip.  I was well represented by my children and with today’s technology I had an audio copy of the funeral from a cell phone recording by the time the family was eating at the luncheon.  It’s great to have technology-proficient kids and their kindness in thinking of how it can be used to help others. I now have an even better quality digital recording of the funeral that was provided by the funeral director via e-mail link and some smart nephews.

While the lives of my family have been turned upside down with the big “C” word and a few somersaults thrown in, we are still trying to get our feet back under us and have seen so many blessings in this past month:

A stronger testimony of the gospel, the Plan of Salvation and the power of the Atonement to help us get through the challenges and trials we are given.  

The hand of our Heavenly Father to inspire others around us to say and do good things on our behalf—it was how I got an early diagnosis without any symptoms of problems to give warning signs.  

A stronger, tighter family and geographically far-flung support system that is only growing and getting stronger.  

The ability to continue to laugh with each other and relish the simple things.

While watching a DVD with my son earlier this week, we saw an expression from a famous NBA coach that was repeated by a current coach at the beginning of a finals playoff series that they were facing:  

“It is not about star-power, because the other team has bigger star players than we have; it is not about skill of individual players or strategy of the coach; it is about our ATTITUDE for these challenges in front of us.  We have prepared,  practiced  and developed ourselves not only this season, but throughout each of our lives to have that correct attitude. I know that we have the right attitude for this time and this place for us to overcome all of these challenges and prevail.“

I feel like I have the right attitude.  We soon have our first consult with the oncologist then our first follow-up to the liver surgery to get the staples out.  We will let you know more after that.

Thanks for your prayers, for putting my name on the temple rolls and for your simple acts of service and kindness to me and our family.  I can’t promise to answer or acknowledge every card, phone call, or e-mail (preferred), but know they are very much appreciated. Knowing I have a great team of doctors, nurses, family and support system is a huge help in keeping my attitude in the right place.