Memorial Day

Memorial Day  - May 26

Today I started with great pain.  The type of pain that is so intense that I can only submit to it until it passes.  It took about 45 minutes for the pain medicine to take over and the pain to subside.   I knew it was only pain but it was very scary for M.E. who was staying at the house over the long weekend because Patty was out of town.  I know she was so scared and felt so helpless as there is little to be done except to make sure I have take pain medication.  We had a long talk after it had subsided some, to comfort her that I would be ok.

Pain

What is pain?

Often times coaches say

“No gain without the pain”

That is not pain

Pain is what brings the strongest to their knees

Pain is what would cause one to

Beg to God for mercy

Pain is what will have one

Grab and hold onto anything for a sense of reality

Pain is what causes one to yell

“Stop, stop, stop” even though no one is there to hear

That is pain, oh yes I know this pain

-Bruce

9th Treatment Day

Friday May 16

The weather cooperated and was able to get Wade going on demo'ing the deck.   Showed him a few tricks so that it was not all brute strength and more about using tools to his advantage.   I am very happy that even though the decking was rotted the underlying frame and supports were all solid.

My radiation treatment went without any issues.   I really like that I have Nicole as the therapist, her pleasant demeanor makes it much easier to just relax during the treatment.

8th Treatment Day

May 15 - Thursday

My treatments were uneventful for the day.  Really falling into a routine on these.

Wade (M.E.'s boyfriend) arrived today.  He is going to be here for a couple weeks to help get a few things done around the house that I can't do on my own any longer.

7th Treatment Day

May 14 - Wednesday

I had a surprising good night of sleep.  The combination of Tylenol and my sleep aid seemed to do the trick and I slept through the night pain free.   I started out the day with a call with Colleen, Dr. Donegan nurse about the pain.  I let her know the pain had subsided but needed something to deal with it.  She said that she would discuss with him and that it probably would not be a narcotic as they can cause constipation something I need to avoid.   A short time later she called back saying he had prescribed  Tramadol, I asked her to just call it into the pharmacy at the cancer center and I would get it when I went in for my treatment later in the day.

My radiation treatment went just fine.  One quarter of my way through treatments now.  I did ask Nicole about what was really going on during the treatment as I knew there was an initial scan and then a longer treatment "scan".   The initial scan is a normal CT scan. After they align the lasers on my tattoos, the CT scan is used to verify I am in the correct position.  The results of the scan are overlain  with a scan which was done during my planning session when they had markers on my body.  They check key bone alignments between the scans thus knowing I am positioned correctly.  The second longer part of the treatment is when the radiation is actually targeted on my body. (which is not felt at all when happening)

Another thing that happened today was my bleeding has finally stopped which was expected with the radiation treatment.  Not bleeding as I have for months should help me maintain my stamina better.

Overall a good day.

6th Treatment Day - A Day of Pain

May 13-  Tuesday

This day had an unremarkable start except that now I am no longer having to run to the rest room every 1/2 hour,  a trip every 2-3 hours is much more manageable.   I have fallen into my routine of eating times coordinating to my medication times.  My nearly seem kind of normal.  Have noticed a small amount of pain in lower abdomen but not really significant.

Radiation treatment was a little late today because they got backed up some.  Nicole was there again today as she said she would be.  I find out that radiation therapy is a four year degree program and that she had attended St. Louis University for her degree.  The treatment was no problem.

On way home I started getting lower abdomen pain of more significance.  I had been told I would experience pain there as that was the area of the tumor and radiation would start to break it down.  The pain while driving was bearable though I was glad my drive is only 20 some minutes.  I get myself inside the house and decide I better lay down a little before I feed the dogs.  Then it really hits.   When in the hospital they always ask on a scale of 1 to 10 with 10 being the worst what level of pain, well this at 11 or 12.  I can remember screaming, "Stop Stop Stop" and more and having the world turn dark during the pain.  It is probably good that the windows were closed and that we don't have real close neighbors as I am sure they would have thought some kind of assault was taking place and have called the police.   After the pain subsided some, I looked and there are the three dogs sitting there staring at me, giving me the "WTF" look,  not sure if they were wondering about the screaming or the fact I hadn't fed them yet.  During one of the lulls in the pain, I was able to get a couple Tylenols (only pain medicine I was "authorized" to take at the time), with hope that it would dull the pain eventually.  I continued to have the cycles of severe pain over the next hour or so, then it finally subsided to a bearable level. The pain continued through the evening though never getting to the extreme pain level but getting to the 7-8 level a few times.  Over night the pain subsided and I was to get a goodnight's sleep.

5th Treatment Day

May 12 - Monday

After a sleepless night my body is exhausted and sore to start the day.   Did morning chemo medicine and about an hour later the severe lower abdominal pain hit in conjunction with my lower back pain.   I messaged a close friend to call as I knew would be better if I could talk through it with someone.  A few minutes later she calls, I know I caused her great concern.   We talk through it, getting my breathing under control and the pain subsides.  She was truly my angel today.

About 8:30 am, I get a call from Dr. Donegan's nurse to discuss my constant bathroom urgency issues which was still on going.  She wants me to get to the lab and get blood drawn and then get to their office as soon as possible.   I get dressed and head to St. Luke's to get my blood drawn (for insurance reasons, it is best if I get my lab work done at St. Luke's).  The blood draw is quick and I head over to the cancer center at Mercy.    I had a relatively short wait to see the doctor since I did not have an appointment.  Get back to the exam room and sit for only a short period of time and it hits me again... panic where is the restroom.  Head out the door and the doctor is just coming in.  He sees the panic in my eyes as I say "Where's the restroom".  I head that direction quickly, making it just in time.    I return to the exam room and he say basically we need to get that under control.   He asked whether is cheaper for me to by medicine over the counter or by prescription, I gave him my copay amount.  He said he would write a script for a fairly large amount of imodium and if insurance would pay for it that amount would exceed the copay amount.  If not then to get it over the counter.  I was to take up to 8 capsules a day to get things under control, he said if that didn't do it there were other medications.  He also did his normal thorough exam.  Then reviewed my lab reports and surprisingly even with all the issues over the last 24 hours, all the indicators in my blood were in the good range including hydration and potassium which I expected to be low.

Got prescription filled and insurance covered it with my low copay.  While still in the parking garage took a couple as I was directed.  Once home things had slowed down some but was directed to take another each time there was a problem up to eight in day, thus too another.  My mid-day I was in much better disposition.

Went in for my afternoon radiation treatment.  A young woman comes to get me, she introduces herself as Nicole, and says she will be my radiation therapist for the next two weeks.   I teased a bit with her as we walked back to the treatment room that all the others said they would be there for several days and that I scared them all off and I never see them again.  She says she won't get scared off.  Her personality and "niceness" is immediately endearing.   The treatment goes very well.

After getting home, I feel so much better than just 24 hours before.  Tired from being up for so many hours but feeling good.  A good night's sleep will feel good.

Mothers' Day and One Mother of a Day

May 11, Sunday

The day is a very pretty day, Mothers' Day.   Patty is working.   My older brother and his wife, from Minnesota,  are stopping by later in the afternoon for a visit on their way home from a three week vacation.   Good time for me to go to the plant nursery to get flowers for a hanging basket that I traditionally plant on Mothers' Day and this one would not be any different.  Picked out a nice selection of flowers for the basket and another large flower pot too.  Going to the nursery should not be an issue, it is a five minute drive each way, 15-20 minutes to pick the plants.... well today my body decides that it needs to visit the bathroom every 30 minutes or so and not give any warning.  Fortunately I knew the nursery had a restroom and the plants were picked up.  I managed to make decent arrangements and got the basket hung in its place, just like I have for last several years.

My brother and his wife arrived and I warned them that if I jump up and start running toward bathroom not be alarmed.  My body did not make my warning unnecessary.  Makes it tough for conversation having to jump up in mid sentence and run and feel you should have jumped ten seconds earlier except ten seconds earlier you not no indication you  were going to need to jump.  This really starting to wear on me.

Patty came home from work and enjoyed the flowers.  I let her know my body was being less cooperative than "normal"

As the afternoon progressed my urgency to head to the bathroom worsened often with a frequency of 20 minutes or less.  Each time worrying whether I would make it in time or not.

My body was becoming exhausted and sore.  My back started to spasm in the early evening with a pain level to the point I was not able to stand or sit.   I am spent.

Hoping the night would be better but that was not to be.  From 10 pm to 6 am, the 17 trips to the bathroom did not leave much time for sleeping.

Things have to change, I can not go on like this.

Long Dark Path

As I enter this long dark path

With pain and fear all around

Offers of help abound

And I respectfully decline

How can they know the hurt, the pain

It is all mine

I walk a little further

The light dims behind me.

Friends and family offer to help along the way

And I give many no thanks yous

How can they help anyway

They have never filled my shoes

Darkness surrounds me feeling all alone

I reach out all around

Feeling nothing there

I step blindly forward

Falling to the ground

Feeling a familiar strong hand

Placed on my shoulder

I hear that strong and clear voice

From my distant past

“Your mother and I are worried, son

As we watch over you

God sent you family and friends

To be with you and comfort you

And you cast them aside.

Now swallow your stubbornness

And your noble pride

And they will be there

To help see you through

I beg “Dad don’t leave me

I need more than ever now”

“Son make your mother and I so proud

As we watch over you

High above the clouds

You know you can beat this”

I kneel there in silence

Feeling alone and in despair

I reach my hand to the air

I feel a hand grasp it

And raise me to my feet

My wife kisses me softly

And gently pulls me forward

“You know you can do this”

As I move slowly forward

I feel another hand and then another

My daughter and a son

Helping to move me along.

The pace quickens

The darkness fades as if there is a glow

A friend offers her hand and another joins in

“You can do it”

My path forward is much clearer now

As I look around there are more and more

Helping me along the way

When the trail gets rough

I do not stumble, I do not fall

As I am held up by them all

There is no darkness

Only gleaming light

When I accept the help from family and friends.

-Bruce

4th Treatment Day

May 9 - Friday

The treatments today were uneventful.  Getting a little more tired.

Springer Spaniel Love Therapy

• Place tired patient on comfortable bed
• Place springer spaniel in bed, we used a small blind liver and white Welsh springer for this treatment.  Larger black  and white English springers work also
• Leave the two alone
• Wait 5 minutes
• Springer content.  Patient content.
• All is good!!!

Third Treatment Day

May 8, Thursday
Falling into the routine of the treatments.  Hopefully it does not become a rut.  They had fallen behind at the radiation therapy treatment rooms.  So I was about 45 minutes later than I usually am.  Put my drive home into rush hour, fortunately it was not bad.  Below is a photo of the radiation machine that treats me.  The blue object is my personal mold of my body that helps to position me just right.  It length is from my chest to below my pelvis. I lay face down on the table and it elevates and slides me into the machine.

Second Treatment Day

May 7 -  Wednesday

The second day was much like the first.  Keeping all the same.  Below are two photos to put things into perspective.  The top photos shows the medications I took before, and that was only occasionally.  The photo below shows what I take now.  The bottom row is the morning and top row is the evening.

Before:

Now: