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.