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.