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.