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.