Some good signs

Well, I haven't blogged here for while.  I guess it is time to give an update

Let's see.  I had sinus surgery again.  The mass that had filled my sinus came back and I was having trouble breathing through my nose again.  The ENT surgeon agreed and wanted to go in and operate again.  I like breathing quite a lot so it didn't take much to get me to agree.  The surgery went really well.  It is interesting.  Last time when they operated they spent over an hour and a  half trying to intubate me by mouth for the general anesthesia but just couldn't do it.  Finally they ended up placing a tube down my nose instead.  It worked fine but made my sinus surgery a bit harder since there was a tube in the very nose that they were trying to operate on.  This time they decided to try again by mouth and for some reason this time it went right in, no problems.  This made for a better environment for Dr. Shippley to work in.  I was grateful.  I am also breathing again just great which I am also grateful for.  Breathing through ones nose is one of the great pleasures of life that most of us take for granted.

I also had eye surgery.  For various reasons the eye surgeon felt it would be better to close my right eye in a way that the top eyelid would grow together with the bottom eyelid.  Later, when I am better they can open my eye again but not for a little while.  That surgery also went well.

For some reason I am no longer waking up in pain in the middle of the night.  For the longest time I would wake up every night at around 2:00 am hurting.  I would go and take something for pain and wander around while I waited for it to work.  Sometimes I was out wandering the Cul de sac barefoot.  Sometimes I would just walk up and down the stairs.  Anything really while I waited for pain pills to work,  This morning I woke up at 5:00 am in pain and realized that I don't usually wake up in pain anymore.  Life is very good.

Finally, I had my second infusion of PD1.  I wondered if I dreamed that phone call from Brystol Meyers but I guess I didn't.  Our treatment this time didn't cost us a single penny.  I can't tell you how grateful I am.  Another miracle really.  This time with the PD1 I didn't have nearly as much pain but that is because JoLynne took measures to make sure I didn't.  She gave me pain meds and steroids before the PD1 to make sure I didn't have that terrible pain again.  Last time it felt like someone was trying to take my head apart with a crowbar.  It really hurt.  I was literally curled up in a fetal position on my bed crying with pain.  You would think that by now I would be good at pain  and I guess I am but not at that level.  That was too much even for me.  JoLynne and I continue to pray with all our hearts that this PD1 will be an answer to our prayers and will finally defeat this cancer.  In additon to PD1 I am also breathing oxygen 24/7 based on another study that we found.  I am also taking Asprin every day.  Again, another study that we found.  Really, we are just trying everything we know how.

I had a sweet text from my doctor in Houston.  On Labor day she told me that she took her four year old to the butterfly exhibit.  Somewhere in the exhibit is a wishing well.  She gave her four year old, a shiny penny to throw in the well and make a wish.  He threw in his coin and wished, "Please help Dr. Vogel and Dr. Kenny to get better"  Dr. Kenny is another friend of our doctor who is fighting cancer.  Honestly it bought tears to my eyes to think about that little four year old wishing us to get better.

Okay, a few good signs.  Since the second infusion of PD1 I have been so tired all of the time.  It seems like I can sleep almost all day.  This is what you would expect if it was working.  Secondly, for the first time in a really long time I am gaining weight a little.  Back before PD1 I was doing everything I knew how to gain weight and nothing worked.  Literally I was eating about 7000 calories a day and still not gaining weight.  I don't know how that is even possible but it was.  Cancer is a wasting disease meaning that when you have cancer it is really hard to gain weight.  The cancer eats up all of your calories.  

Now I am eating about 3-4 thousand calories a day and lo and behold I am gaining weight.  I am up from 150 to 158 now.  Again, I don't know why but it seems like a good sign, I am grateful.  I feel better too.  Really, other than being tired, I feel pretty good.  I spent the other afternoon providing dental care at one of my charity clinics and loved doing that.  I have been going back into work again a little bit as well.   I really love seeing the people that I work with and my dear patients.  I have such a positive work environment.  Here in the near future I hope to be to work a little more if I can just wake up.

Okay, the third thing is interesting and maybe the most promising of all.  It is almost exactly four years ago that I was diagnosed with cancer.  Before that I had taken my charity, "Share a Smile" out of the country on a fairly regular basis to help the poor outside of our country.    Often those trips were the results of spiritual promptings.  I felt led by Heavenly Father about  where I should go and when.  Well four years ago all promptings about traveling ceased.  There was absolutely no inspiration for me to travel anymore.  I guess I just felt like it was more a time for me to stay home and get better.

Well, about 3 weeks ago I went to bed and had a very vivid dream that I was traveling again with Share a Smile.  In my dream I could see the faces of the children that I was helping.  I could see the looks of gratitude in their eyes when I helped their mouth pain go away so that they could eat again without pain.  It was all very vivid.  We were in Cuba.  It was a beautiful dream, I enjoyed it very much.  The next night I went to bed and once again dreamed that I was in Cuba treating patients.  This time I could see so vividly the faces of Cuban dentists who were helping me.    They were so eager to learn from me.  Once again we were treating mostly children.  Again I woke up again surprised that I would dream about Cuba twice in a row.  Well the next night I went to bed and guess what, yeah, you guessed it.  Cuba again.  Very vivid.  This time when I woke up I thought, "Well, maybe this is more than a simple dream.  I think I am being prompted."  In order to make a trip to Cuba I need to be pretty healthy.  I am hoping that God knows something that I don't yet know.  So, I am having faith that I am going to get better and I began planning a trip to Cuba.

I am working right now on getting an official invitation to the country.  I am a member of lots of societies.  One of them is called the "International College of Detnists".  I contacted the incoming president of the college.  He is very interested in  helping me get invited to Cuba.  I have already arranged at least four dentists from the US to go with me.  I just got notice that Aribex will be willing to donate a portable x-ray unit to the cause.  I am in the process of ordering new portable dental units to leave behind with my new friends I am going to make, Cuban dentists.   I am just assuming that I am going to get better.  What else can I assume.  If God is prompting me to go to Cuba, then He must be intending to control or remove this cancer.   That sounds good to me.

So I would have to say that I am feeling pretty good and that my heart is literally brimming with hope for great news about this cancer.  We are still praying as hard as we know how.  By the way, I really appreciate all of your prayers as well.  I told my doctors in Houston that nearly all of my patients pray for me daily.  They had a hard time believing me.  I insisted that it was true. At the end they just said, "You are so lucky to work in an environment like that and to have patients who love you so much"  I have to say, I agree.  Thank you to all of my friends, patients, followers etc who have basically prayed me alive up to this point.   I love each of you.  But mostly I am grateful to God who, in his great mercy, has seen fit to preserve my life.  I love Him.  My life is a gift.  I intend to use it in His service making the world a better place.  I will forever be grateful to Him and His Son.

Praying for miracles

Well, a quick update.

I love this picture.  It is an actual T cell attacking cancer

We met with the staff Tuesday and had a blood draw.  They like to track the numbers of genetically modified cells wandering around in my blood.  They don't have results yet but they did tell us that measuring peripheral blood is not a good indicator.  Apparently the T-cells cluster in the spleen, liver and especially around the targeted tumor.  So the ones wandering around in the blood are just kind of like scouts looking for any stray cancer cells that might have gotten away.

Except for Sunday when I felt a little flu like, I have been feeling great.  I have a tumor in the temple area that bulges out a little.  During chemotherapy that bulge diminished a bit and became softer.  After the T-cell infusion the bump enlarged a little but it is still pretty soft.  My jaw seems swollen too.  I have had an increase in pain as well.  When we visited with the doctor yesterday she seemed quite encouraged by the swelling.  As she said "I hope that means it is working".

And now two T cell on the attack.  

It's interesting when we first met with her she was very low key about the study.  It is after all a phase one trial, that is the very earliest type of trial.  Really nothing has been proven at that point.  During our first meeting she was very careful to downplay any expectations we might have.  She kept saying things like "This is a dosage trial, we aren't really expecting to cure anybody" and things like that.  Now that we are in the study and doing so well, she is almost giddy.  She keeps crossing her fingers and smiling a lot.  Needless to say, we have been hopeful all along.  We know who is really in charge and that He can choose to perform a miracle when and where He pleases.

I think I have mentioned before how much trouble I have had gaining weight.  I had never really tracked my calories until now.  It suddenly becomes apparent to me how little I had been eating.  Now that I am paying attention and eating more I am doing much better.  I gained 8 pounds this week.  Pretty impressive.  Of course JoLynne is making milk shakes with ingredients like, Ice cream, peanut butter, whole milk, muscle protein powder.  1.5 cups has over 600 calories.  Yummy!  To bad I can't taste it.  I have been exercising about an hour a day so most of the weight gain seems to be muscle.  That is nice.  I was looking kind of like a POW there for a while.  It's nice to get some muscle back.

Thank you again for your prayers and your faith.  We miss being home and hope to be there again soon.

Ninja turtles

Well, it has been four days since the T-cell infusion.  I haven't mutated into a Ninja Turtle yet, that is a little disappointing but oh well.  Actually I feel really good.  My face is a little more swollen and tender.  Normally that would be a worry but they told us that if the T-cells did what they were designed to do that the tumors would swell when they were attacked so maybe swollen is a good thing!

I have had such a hard time gaining or holding onto my weight, especially recently.  Not being able to eat and swallow well by mouth doesn't help matters.  Anyway, I am working on that.  JoLynne wants to lose some weight.  I have a tube that I use to put food directly into my stomach.  I tried just connecting the tube between us
for a direct transfer.  I'm not sure if it worked.  She looks thinner to me.  I will try it again today.

Actually I started tracking my calories.  My son told me about a program called "Lose it".  It is a phone app but it's pretty amazing.  Mostly you just scan the bar codes of the food you are eating and it puts it right in.  So I set my current weight, 152 pounds and my target weight, 180 pounds.  Well, the program didn't know what to do with that.  I guess that is what you get for trying to gain weight with a program called "Lose it".

The most beautiful place in the world

I am home from the hospital.  Yeah!  The last two weeks have been strange.  Ever since I began my last round of chemotherapy two weeks ago my health went into a a steady decline.  As I try to remember the events these last two weeks it all seems fuzzy like a dream.  Eventually I ended up in the hospital with a serious condition called "Tiphlitus".  It pushed me closer to the veil than I wanted.  I shouldn't complain.  It is those times when I am pushed to the very edge that I have had the most sweet spiritual experiences in my life, and I am grateful for those.  However, as a general rule,  I would like to live my life just a little further from that edge.  Thanks to the prayers and faith of family and friends, the skills of doctors and nurses and the intervention of God, my body has begun to mend.  I have a ways to go still but yesterday they felt I was well enough to finish my healing at home and I was discharged.

Santa Claus or Eric...hmm

One of the effects of tiphlitus is extensive abdominal swelling.  I have been blessed in my life to never really struggle too much with my weight.  I really take no credit, just the hand I was dealt.  What a strange experience to be transformed nearly overnight from a size 34 waist to a size 44 waist!  And to go from 175 pounds to 215 pounds.  Very weird!  Maybe I'm turning into Santa Claus?  It has gone down quite a bit now but I still wonder who I am seeing in the mirror.  It's like looking at myself in a funhouse mirror.

View from my hospital room

While in the hospital at least I was blessed to have a room with a beautiful view.  That was nice.  However I think that I prefer my current window view even though somewhat less spectacular.

A view I prefer

Years ago, when I was in dental school,  I had a patient who had traveled nearly everywhere in the world with his job.  I was very untraveled at the time and so I asked him one day, "What is the most beautiful thing you have ever seen in all your travels?"  He thought for a moment and then said, "The most beautiful thing I have ever seen is what I see at the end of a long trip when I walk through my front door".  I have never forgotten that and that is how I felt when I walked through our door yesterday.