First Day No Treatments of Any Type

Saturday, July 14

Peter and Amber flew out to Denver today to start their new life there.  We go to downtown St. Charles to walk around the historic district and visit a few shops before they go.  We got down there a little before the shops were open but enjoyed walking around the historic district.  I am not sure Peter had ever actually visited the historic district in all his time living here. It was good walking around with Peter, Amber, and M.E.  We then brought Peter and Amber to the airport.  Sad to see them go but they are off to new adventures in Denver area.

Went to dinner at my daughter Sara's house.  It was a very good dinner.  Enjoy visiting there because of one of her cats is very sociable.   Poor little Sophie I think is a dog condemned to spend its life in a cat's body.  It plays like a dog, likes attention like a dog but is in a furry cat body.  Now her other cat Lewis, he is a cat, hardly ever see him as being sociable is not in his cat nature.

After returning home had a good evening hanging out with M.E. and Kate.

This has been a good day.

28th Treatment Day - The last treatment day

Friday June 13

Morning spent hanging around the house with Peter, Amber, M.E. and Kate.  It was a good morning.  They all went out for all you can eat sushi for lunch.  All you can eat is pretty much a waste for me now, all I can eat is not much.

Before heading to my treatment today I felt a slight amount of stomach discomfort so took a couple Imodiums and a pain pill to try to stay ahead of any issue.  M.E. and Kate went with me to my treatment and M.E. drove.   About half way to the cancer center my stomach started to become more active and I could tell gastric distress was on the way.  Had M.E. to drop me off at door and I rush in to the restroom in time.  I get changed in to my double gowns and then the pain hits again.  I can see the concern rise on M.E.'s and Kate's faces, I head back in restroom and think I have it under control.  Head back to waiting room and sit next to M.E. and then it hits hard again, doubling me over.  I tell M.E. to find a nurse.  Both a nurse and doctor come to check me out.  They did not find anything in particular to be concerned about.  Finally the pain broke and I started feeling better.  The doctor checked on me again and all seemed to be fine.   Just has fast as the pain had come it had disappeared.  I felt bad for the girls as I know it scared both of them.  The pain disappeared just in time for me to go back for my treatment.   The treatment went fine without incident.  Finally 28 radiation treatments are done.

Another enjoyable dinner with everyone, life is good.   Peter and Amber give me my father's day gift early as they are leaving tomorrow morning.  They also found a very funny card they gave to Kate.

This has been a good day despite the severe pain... just something to get past to get to rest of a good day.

27th Treatment Day

Thursday June 12

Everyone went to the City Museum (a must do in St. Louis) this morning.  Quiet morning.  Went to my treatment with no issues.  One left to go, I think I have this down now :-)

Another great dinner with lots of conversation.  Lots of humus and olives consumed :-)  This has been a good day.

26th Treatment Day

Wednesday June 11

Today my radiation treatment will change for the last three days.   Dr. Stroud had explained it yesterday during my appointment.  M.E. drove me to my treatment today, it is always nice to have someone else drive. I arrive for my treatment and I was happy to see Nicole was my therapist, I have great confidence in her.   She explained everything again, saying that after the initial scan they will get everything setup for the new protocol  and then the doctor has to approve it.   I go through the initial scan and wait and wait (note the position I am in is not very comfortable at all and the wait was probably only a few minutes that felt like an eternity).  Nicole say "Bruce, don't move, we are all setup and we are just waiting for the doctor to approve, it should be just a few more minutes."  A few minutes later I hear her say "Here we go" and I slide back into the machine.  The treatment overall went well.

For dinner, Sara my oldest daughter came over, so all my children except Patrick (who is in California), plus my two potential future daughters-in-law were all present.  It was so nice to have them all sitting around the dinner table.  Amber introduced Kate to the fine delicacies of Kalamata and humus.  They both seemed to enjoy both very much.

Overall it was a very good day.

25th Treatment Day

Tuesday June 10

Today started out taking Peter and Amber to Bellefontaine Cemetery in north St. Louis.  This cemetery the final resting place of many of rich and famous of St. Louis particularly in the late nineteenth and early twentieth centuries.  There are many private mausoleums with intricate designs and stained glass.  Also the cemetery  has many fine funerary art sculptures through out its grounds.  I picked up a booklet at the main office on the way in which explained who many of famous people were.  By about 10 minutes in to touring around the cemetery I could tell it had peaked Peter's interest.  I am sure he did not expect that.  When we got home he did searches on people who were not in the booklet whose graves or mausoleums had something of interest.

The afternoon was booked.  First had an appointment medical oncologist, Dr. Donegan.  The appointment went well.  As this will be the last appointment I will have with him until after surgery he laid out what will be the followup treatment plan which will include about 5 months of infusion based chemotherapy (fortunately at this point it anticipated to be biweekly).  He also wanted me to have another iron infusion so my blood will build up more prior to surgery.   He then said he wanted me to have an MRI on my liver, as some spots had been noted on original CT scan and the liver is one of the first places my cancer will spread to.  Alarms go off in my head, my mind assume the worst.  Not how I wanted that appointment to end.

Then had an early radiation treatment as I showed up early and the scheduled people had not arrived and they did not want to fall behind.  I was done with the treatment 20 minutes before I was scheduled to start.

Then had my final appointment with my radiation oncologist.  He explained how the treatment would be slightly different the last three days as it would be more targeted right on the tumor.  Like always his appointment was very short.

Late this evening M.E. and her classmate, Kate (who happens to be dating my younger son Patrick) arrived for the rest of the week.  I don't think we have had this many women the house ever

Except to now having to do an MRI the day was good.

24th Treatment Day - Last Day of Chemo

Monday June 9

Today is my last day of taking chemo for this round.  Means I  will be able to sleep in as I won't have to  be taking pills a 6:30 am so I can take my evening pills at 6:30 pm.  Also means breakfast and dinner won't need to be at such regimented times.   I have been fortunate I have not been effected with any of the "normal" side effects of chemo and have not had any of the specific to this particular medicine such as hardening and cracking on skin on hands and feet which effects more half the people on this medication.

The radiation treatment went well this afternoon with no problems.

Today my son, Peter, arrived with his fiancee, Amber.   What a wonderful young woman.  She brings out the best in him.  She wants to visit some old cemeteries, we have that planned for tomorrow morning.  Peter just rolled his eyes at that.

23rd Treatment Day

Friday June 6

What a great day.  Surprising what 24 hours can do.  No tiredness all day.  Very short period of discomfort this evening but not very intense or long in duration.  Was able to eat near normal with no issues.

Peter, my oldest son, arrived home after another tour in Afghanistan.  His route home was a bit confusing with vacation stops in Thailand, Vietnam, back to Thailand, then North Carolina.  Then he had a short work assignment on the Kenai  Peninsula in Alaska then finally back to Missouri. What a great adventurous life he leads.

Arrived for my treatment quite early and was surprised a couple minutes later when they asked me to come on back for my treatment.   I was done and on my way home long before my normal scheduled time to even start my treatment.

Wonder

Often times in churches now
You turn all around
Holding hands and you do vow
“God Loves You and So I”
Sometimes it feels so cold and contrived
You sometimes begin wonder
Then upon this day an older man stands in front of you.
His greying hair and beard all asunder
He looks to you with his deep blue eyes
He reaches out to touch your hand
You feel a quiver run through
As you look into his tearing eyes
You know they can hide no lies
And you hear it is as thunder
As he softly whispers
“God Loves You and So Do I”
You are shaken to your inner core
As you repeat as not to blunder
“God Loves You and So I”
As you turn to walk away
You hear him say
“Seize the day
Do not wonder”

- Bruce

22nd Treatment Day

Thursday June 5.

Sorry have not posted lately.   Too much exhaustion.   Too much pain.  Just too much.

Treatments have been going well.  Six radiation treatments left, done next Friday.  Four more days of chemo done on Monday.

I will try to back fill the days I have missed with events as they occurred.

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:

First Treatment Day

May 6 - Tuesday

Today is a big day my chemo and radiation treatments finally begin.  My chemotherapy is a four pills twice a day.  These are preceded by an anti-nausea medicine.   I take them this morning  after eating breakfast with no ill effects, so that is good.

Relax the rest of the day until I do my daily drive to the cancer center for my radiation treatment.  I check in and change my clothes as I was directed.   I sat down and an older gentleman, asked if it was my first day.  I said yes and he said it is no sweat, he was on day 17 of 41 and I said I had 28 to do. (He is being treated for the prostate cancer I later learned).  His appointment is the right in front of mine.  My time comes for me to go back to the treatment room.  I get on the table on my stomach they shift me around aligning the lasers on the three tattoos previously placed.  The table slides in for an initial scan and then it slides in for the radiation treatment.  It stops at various points along the way for the radiation to treat different  places or angles (I am not sure).   The machine is louder than I expected and the best I can describe it is a humming type of white noise.  The whole scan and treatment take about 10 minutes and then I am on my way.

The evening chemo is the same as the morning, take anti-nausea medicine, eat dinner, wait a short while and then take 4 chemo pills.

Feeling good after this first day.

First Steps

When a child takes their first steps

Parents beam with pride

When a child takes their first steps on that school bus

Moms are proudly wave but have tears they hide

As the child grows and takes those first steps across graduation stage

Family and friends cheer and celebrate as the grown child takes each stride

Now I take a new first step in my battle forward

There is no beaming, no friendly waving or cheers of pride

But as the first step of many in this hard fought battle

There is strength and power I feel to the core deep inside.

A Day Of Iron

May 5 - Monday

Today I am scheduled for a 6 hour iron infusion, making up for the one I missed the previous week.  My oncologist is also a hematologist thus he really pays attention to blood.  He said diet and supplements would not bring my iron level up fast enough due to my continual blood loss thus an iron infusion is necessary.  He is new to this practice and he prescribes a different type of iron infusion than others.  Most others have a two hour type iron infusion, he prescribes a much more extensive infusion, this length really plays havoc on the schedule at the infusion center as I will be occupying one of their chairs for most of the day.  This center mostly does the outpatient chemotherapy treatments and other oncology shots, etc.  I arrive at my appointed time at 8:00 am and I am assigned my chair for the day.  The setup is nice, an electric reclining chair and a tv and plenty of plugs so can plug in my phone and laptop that I brought along.  The nurse takes my vitals and explains the procedure and I add up the hours as she describes them and it really sounds like this is going to be 7 or 7 1/2 hours instead of 6.   I am ok with that, have nowhere else to go.  The nurse put the IV in, the stick is good, no practicing today :-).   Sets up a bag of regular saline. Then hooks up a small bag of iron.  This is a test bag of iron, it goes in over the next half hour. It just seems strange watching a brown liquid flow into your arm and you think,  this is supposed to be good for me. Then I have to wait an hour to make sure I don't have a reaction.  The the nurse brings out this huge bag of iron along with another of saline.  She says these will flow in over the next 5-1/2 - 6 hours.  In my mind, I see all those fluids and I think they are just trying to float me out of here.  With that much iron going in, I am glad it is not raining out, for sure I will rust.  Other than being very boring the infusion goes very well.  As I walk out I feel quite good.  I have a little more pep in the step, I guess a body does not like to be anemic.

Feeling good today.  Looking forward for treatments to start tomorrow.

A Day of Mostly Rest

May 4 - Sunday

I had a restful night of sleep, not as good as the previous but no bouts of  "night fright" either.  Today was mostly a day rest and relaxation.  I did go out and did the weed whack with the gas weed whacker as my daughter M.E. mowed.   She says we have too many trees to mow around.

Good day.  Good to rest as my treatments all start this week.

Planting Day

Saturday May 3
Wow what a night... 7 hours of straight sleep and then 2 hours more.  I haven't experienced that much sleep in a night for several months.  We are finally going to plant the garden today after getting through the "minor disruptions" of the previous week.  The weather is great.

Went to the nursery to get the plants for the garden and bought some fresh spinach there also.  Helped with the gardening, Patty did the planting and M.E. and I did the tomato  and pepper cages along with pole bean support.  All seemed to go in well.

Got kind of tired by the end of the day but at least the garden is in.

Planting for the Future

Each spring we plow the ground to plant some seeds.

We water them with hopes that they will grow.

Some will spout and some will not.

Its ok as we planted a lot.

These little plants we nurture so,

We fertilize, water and provide all their needs

Some will grow, some will not

Its ok as we planted a lot

As summer comes with its warming sun

Our plants grow big.

Some will flower and some will not

Its ok as we planted a lot.

With the cooling of the fall

It is harvest time, to set aside

Some bear fruit, some will not

Its ok as we planted a lot

Now we look at our good harvest there

Thinking back to the spring

What if we left all those seeds on the shelf?

Your ideas, hopes and dreams are like seeds

Plant a lot, nurture them, see them through

Some will bear fruit, some will not

Its ok if you plant a lot.

Just don’t leave them on the shelf

- Bruce

New Hope - New Direction

May 2

Another of night waking up several times and laying awake with fear and doubt, what I have termed to be "night fright", resulted in be getting about 2 hours asleep again.  I am feeling very low.  Patty tries so hard to console me, support me and bring me up.  I can tell I am bringing her down, got to stop, she is the strength through so many challenges before.  I say I am fine and that I will be ok, and say she should head off to work. Not long later my oldest sister calls to check in on me. (Coincidence no,  Patty knows big sisters can talk with little brothers like no one other).  She offers to come down to stay with me (she is a retired nurse) but I say that is not needed now.  We talk, we cry.  She makes me promise that I will share everything with my oncologist when I meet with him later in the day.

Later I have a call with my close friend.  We talk, we laugh, we cry. She says "Bruce you will probably hate me for this but you need to move beyond this bitterness and anger" and relates personal story.  It hits a cord deep in me.  Just then I hit refresh on my Facebook page and top post was for the American Discovery Trail.  A walk across America is that my future.  It has been a dream of mine for some time.  Once I'm well is this my opportunity?  I can see something out there now.

I have an appointment with my oncologist in the afternoon.  My daughter, M.E., comes along.  She has a list of questions on her pad, I am sure she is her mom's spy.  Making sure that all the questions get asked and answered and that the answers don't change before I get home :-).    Question like how much coffee... what no more 8 cups.  Infection control, should Patty change her close before coming home from her work as an in hospital physical therapist... no not needed, just probably best that we not roll around with her still in her scrubs... I say great, we can roll around after the change... my daughter turns a few shades of darker pink and say that does not happen :-)... the doctor answers "there we have proof of immaculate conception"  The appointment goes well.  He gives me a prescription to help me with my nights and also sets me up with an iron infusion for Monday.

This day started low and ended high.  My spirits are the best they have been  in a while.

Rise up

Rise up,  Rise up
Against this pain
You have much to gain

Rise up,  Rise up
Above the sorrow
As you plan tomorrow

Rise up,  Rise up
It God’s master plan
For it will make you a better man

Rise up,  Rise up
With the morning sun
To fight on until this battle is won

- Bruce

Cardiac Cath and I Finally Go Home

May 1

After a fitful night, another day with no breakfast because my scheduled cardiac cath.  Patty came in for a morning visit before she started work for the day. My daughter M.E. is spending the day with me.  Though I will be out for much of it, it is really great to have her here.  I have a young student nurse come in to check my vitals and she was very pleasant.  I then waited around to go down for my cardiac cath.  The transports came and I was transferred to a gurney.  As I was wheeled of my room the young student nurse asked if I was ok with her observing my procedure.  I welcomed her to come along.  Down to the cath lab and to a prep room we went. Two nurses plus the student did the prep on me.  The nurses left and the student and I stayed and waited.  We talked and talk about so many things.  She was so compassionate and caring.  We waited and then she had to leave as her day was done.  Unfortunately she did not get to observe the procedure but I think she did learn a lot that day. A nurse comes in and starts to wheel me to the cath lab.  As we are passing the front desk, we are told that the doctor is delay again for another half hour.  We decide to go ahead and wait in cath lab instead going back to prep room.  They have me stay on my gurney, the operating table is not very comfortable.  I chatted with the operating room nurses until it was finally it was time for them to do the final preparations.   I was awake during the procedure though I could not really see or feel anything. Now I have new restrictions, don't move your right leg for five hours.  Are you kidding me, not move a leg for 5 hours.  This sounds like some real fun. But the alternative is not very attractive, springing a leak in your femoral artery is not really desirable.   But at least I can eat.  Laying around waiting that legs really gets stiff.  Finally the times up and I can sit up and move around. Its now about 5:00 pm.  Just have to wait for Dr. T, the cardiologist to come by and give me the results and then I can leave.  6:00 pm then 6:30 and still no Dr. T.  The nurse calls him to remind him to stop by and he will be there at 7:00 pm.  Well comes and goes but finally about 7:15 Dr. T visits and reviews my result.  Very good indeed with my family history.  Highest blockage was 40% and they don't do stints until 70-75%.  Feeling better now.  I can go home.

At home in my own bed feels so nice. I hope I can sleep a good night.

Angels

Are angels only those heavenly bodies.

With blond hair, halos aglow, with wings of white silver  that that fly up above us?

Are there others we know?

That are there where ever we go.

That walk with us side by side

Who show their love, their compassion, their kindness with pride.

An old man with an old ragged hat who gave directions to go.

The young student nurse who sat with you when  you were troubled so.

Can they be angels?  You bet.

When they show their love, their compassion and their kindness, even though you just met.

That close friend you feel beside you each step of the day

Your son, your daughter, and your significant other, always there helping all along your way.

Can they be angels? Yes!!

When they show their love, their compassion and their kindness, for a life that’s a mess.

You can be an angel too.

Show your love, your compassion,  and your kindness, just be you.

Be an angel among us,  just be true.

- Bruce

A Day of Tests and Being Tested

April 30

I sleep the night in the hospital in an exhausted and somewhat drug induced state but still waking up several times. I can't eat or drink because of the tests that have been ordered for today to find out if I have a heart, err to check out the heart I have.  I have found hospitals are much like the military... hurry up and wait.  The first test is an echocardiogram, basically an ultrasound of the heart.  I am wheeled down to the echo waiting room and given a contrast.  Need to wait 30 minutes for that to get circulated correctly.  Echo is completed back to my room and wait around some more.

Wheeled down to my stress test to check out my heart in another way.  More contrast agent and a wait.  Laid down on this table and it slide into a machine to take some pictures of my heart.  Then to the stress room.  The doctor had ordered a chemical stress test instead of the treadmill test.  The nurse was questioning why.  I had no idea.  She asked if I would rather do a treadmill or the chemical test.  I said it no difference to me.  She said they would have to get a new order from the doctor for a treadmill test... decision made, it would be a chemical test, I wasn't waiting for a new order.   They put chemical into me... felt like a form of torture to me.  Sweats, out of breath.  Back in the machine for more pictures.

Then back to my room to wait. Patty is there and my daughters come to visit also.  It is great having them there.  Finally I can eat.  I order one dinner, roast beef, potatoes, carrots, cheese cake, a banana and two cups of coffee.  Wait an hour and a half and hungry again. Order another this time a tuna sandwich, cottage cheese, forbidden carrot cake (I will eat around the raisins and nuts, ya sure), a hot chocolate and a cappuccino.  Trying to kill some head pain. caused by a combination of lack of  caffeine and the nitro gel patch that is on my lower leg.  The hospitalist  doctor stops by and says there were some concerns with my stress tests in that the showed I have had a heart attack at some time (in my mind I am thinking ya, right down there in that torture chamber they call a stress room :-)  )   and that the cardiologist wants to review all my tests of the day and the night before and would be in to see me this evening.  Seven o'clock comes goes and then eight o'clock, I mention to the nurse that I guess he won't make to night.  She says he will be here, might be 9:30 or 10 or maybe even later.

I settle in to chatting on line with my close friend.  Our chat starts out light and then gets a little heavy,  a question was asked and was answered putting my mind at ease in one dimension.   We then had to get lighter again talking about vacations and destinations.  Was a very good chat.  This friend is so helpful, more than she can know.

Waited and waited for Dr. T. to come.  He finally came and walked through his findings and concerns.  He said we could just wait and watch or he could do a cardiac cath, and check to make sure everything was fine.   I get on the phone and have the doctor explain it all to Patty as I didn't feel I should make that decision alone.  We decide it is best to find out and so would have a cardiac cath in the morning but not too early in the morning.

Now it is night with some new fears, what will they find?  Sleep is fleeting at best, probably got 2 hours which has been about normal lately.

Night Fright

God are you near?
Can you take away the doubts and fear?
Can you wipe away just one tear?
As the darkness marks the end of another day
Oh God I do pray
Please do end all my sorrows
For I want many tomorrows
In the darkness of the night
All I feel is doubt, pain and fright
I have become such a pitiful sight
As I pray to you God with all my might
For at least one tomorrow
Even with all its sorrow
As I lay awake in bed feeling so much doubt and pain
I say to God this is insane
This is truly night fright.
This is just not right
Waiting for some morning light
As I see the rising sun
I know another of God’s days has begun
As I march forward ‘til this battle is won.

-Bruce

The Day From Hell

April 29

This should be a great day.  My chemotherapy pills are scheduled to arrive and I have a planning session with the radiation oncologist.  I should have my treatment plan all in place once this day is done.

Go to radiation oncology and right on time I am met by a nurse that brings me back to the changing room.  She explains procedures there and said it will be the same for my treatment days except on treatment days I can leave on my underwear today it has to come off.   So I put one hospital gown with the opening to the back then another on top with the opening to the front, remove my pants and underwear they get hung in a locker, keep my shoes on as I have to walk a ways and I take my valuables with me.... easy enough.  Wait in the waiting area for a short time and then off to the treatment room.  There the nurse explains what will happen.  I am to lay on this somewhat padded table face down.  There are two hard foam blocks they are going to position under me so my hips and chest will be elevated and my belly will sag in between.  This is so they can radiate what they want, by pelvis, and not radiate what is not wanted, my stomach.  Then a bag of epoxy foam which feels warm is placed under me to make a mold of my body.  Some markers were placed on my body as they shifted me back and forth to align me with the lasers shining in the room.

After all the moving and aligning is done, I have three permanent tattoos applied.  My first tattoos ever.  Some people get tweety bird, a cross, or a heart as their first tattoo, not Bruce, he gets three small dots, smaller than the head of a pin, one on each hip and the other on the tailbone.  Hmmm, somehow I feel cheated. :-)

I head home feeling good.  I have all my radiation treatments scheduled and chemotherapy medicine is waiting at the door along with a couple other packages delivered by UPS.  Finally I am set everything is set to start on Tuesday, May 6.  Feeling Good.

Then the call.  It is my supervisor for my job.  A little small talk and then  "Bruce, sorry to do it this way but your position has been eliminated effective May 31"  My job for more than 25 years is ended and to find this out one week after being diagnosed with cancer.  This is too much, I say some bad and evil things that I won't repeat, all from the raw emotions of the moment.  Nothing he or the HR person also on the call would say would make it any better. I send an email to my close friend all it says "I am being terminated now"  The call ends.. my job of 25 years is gone... I don't know my health future and now I don't know my economic future.

 I am feeling betrayed, angry, hurt, devastated, destroyed... My coping skills can not handle this... I have faced many challenges and set backs in my life nothing like this.  My thoughts turn bad, very very bad... I can not deal with this, make the hurt, the pain, the broken heart go away... Just end it now.  God must of been looking down on me just at that moment, my phone rings it is my sweet and loving daughter, M.E., calling to check on her "pops".  I answer and can tell she is driving and ask her to park before we talk.  I let her know the events that have just occurred, we talked and we cried together, and my worst of  thoughts are gone.

I talk with my loving wife, Patty, she tries to comfort me and tell me is will alright and that she would be home soon.  My self doubt rises, I question my worth, I question my why.  Patty tries to comfort me and to ease the pain.  My stress rises.   I can tell my body is not taking this well.  I feel pain in my chest building, no not now, I don't need this now. I try to convince myself it will go away but it stays.  I start to tell Patty the problem but can't bring myself to say it.  Pain go away, I feel my arm begin to feel odd and I know it is time to tell Patty we need to head to the ER.  Patty driving, I tell her to slow down I will be fine.  I message my friend, "Pray for me. Chest pains. On way to er. Broken hearted..."

We get to the ER and I was brought in immediately.  The rest of the evening is a blur. I don't remember the doctor, the nurse or much else about the night, though I was cognitive the night through.  I was given a sedative to calm me down.  My blood pressure was all over the place.  My heart beats were not  quite aligned just right.  Blood enzymes test indicated probably no heart attack.  Potassium level was low which was off concern.   The decision was made to have me stay overnight and have tests done the next day.

I am feeling so low, so betrayed and so defeated!!!


God Do You Care?

God are you there?
Have you left me in despair?

Am I here all alone?
God do you even care?

Do you see the hurt, the pain and the sorrow?
That I see no tomorrow.

Am I here all alone?
God do you really care?
-Bruce

Things Are Coming Together

April 28

Was a busy day at work being a payroll day but got through it fine.  Coordinated with the specialty pharmacy about my chemo drugs.  They will be shipped out tonight and should arrive tomorrow.  It is a good thing we have good insurance.  These drugs would have cost about $8,000 for the first 30 days and I paid $14. Wow.   Called Dr. Donegan's nurse about the problem with the anti-nausea drugs.  Just moments before she called me back the pharmacy at St Lukes called and said everything was worked out with insurance and to stop by and pick up the additional 45 pills.  Talked with the nurse for a bit to resolve a few other questions.  Radiation therapy planning and mapping is scheduled for tomorrow and then I will be all set and then finally I can really be winning this battle.

Construction and Rainy Days

Saturday and Sunday April 26 and 27.  

On Saturday, Patty and I, went to Home Depot to get the material build a raised garden bed.  Once home we built the 4' by 10' bed that is 11" high.  It was placed over our earlier garden bed.  Had to dig post holes in the corners about a foot deep to anchor the box in place, it has been a while since I had used the post hole digger.  Got a bit tired with that.   After some rest we added soil to the box.  First we added a good layer of compose from our compost bin, there sure were a lot of egg shells there.  The added garden soil, bring the soil up about 2/3's of the way in the box.  Probably should have added more soil.  Plan is to plant the garden on Sunday. End of the day I am tired but feeling like at least something was accomplished on this hectic week.

On Sunday it rained most of the day, so no planting today.  Ended up being a day of rest.

Meet The Oncologists Day

Today I had appointments at the David C. Pratt Cancer Center at Mercy with both of my oncologists, Dr. Donegan, medical and Dr. Stroud, radiation.  Met with each of their nurses also,  both nurses seemed to be very personable.

Dr. Donegan seems to be a very nice and personable physician.  Very caring,  told me we would be in a long term relationship, 20 years until he retires, then he corrected himself, might now be 30 years with Obamacare.  He explained everything very well, what I would go through, side effects that I may have, etc.  He said that anytime during treatment if I felt run down or needed something to stop by and he would get iv setup for me or whatever needed to help me along.  Found out his wife is also a physical therapist, a definite plus on his side :-).   I left the office with prescriptions for my chemotherapy medicine, anti-nausea medicine and a good feeling about this doctor who will be helping me through this battle

Dr. Stroud, seemed to be a very technology oriented physician which is exactly what you want of someone zapping your body with radiation.  He explained the process very well.  I was setup with a planning session for the following week when a mold of my body and the lasers would be set to properly align my body when it passes through a machine much like the appearance of a CT scan machine.  He also covered the expected side effects of radiation treatment and remedies and care for them.

After leaving the cancer center I felt confidence in the medical team assembled to help me battle this cancer.  They all seemed very professional, knowledgeable, compassionate and interested in helping me in the fight.

Only one small hiccup for the day,  when trying to get my anti-nausea medicine prescription of 60 pills filled the pharmacist said that insurance would only pay for 15 pills a month. I explain I would be undergoing chemotherapy and needed to take twice a day, thus 15 would only be good for a week.  Pharmacist said they would work with doctor and insurance to get problem fixed.

Feeling good.

Meet The Surgeon Day

Today was my first appointment with the colorectal surgeon, Dr. Gregory W. Brabbee, at Mercy Hospital.  Very impressive.  Explained everything in great yet understandable detail to me and my wife, Patty.  He gave real hope that this battle can be won with a three pronged attack with chemotherapy and radiation therapy followed up with surgery about four weeks later and another about four weeks after the first. He got on phone with medical oncologist immediately to discuss my case.  Before I had left the office his scheduler had set me up with appointments with medical oncologist,  Dr. Shaun C. Donegan, and radiation oncologist, Dr. Jaymeson S. Stroud, both for the following day.   Talk about service, this is how medical care should be.

The Letter Day

How to tell my coworkers of my diagnosis?  What will be the timing be?  A few are already wondering whats going on, I never miss time on a Monday.  Even when on vacation I have worked Mondays to insure people get paid.  If I miss any time on a Monday, it has to be something big.  I decide to send an email to the team I am assigned and the payroll team which I provide support to.  The following is the content of the email I sent:

As some of you may have heard, I am currently facing the challenge of my life: I have been diagnosed with colorectal cancer.  I am currently undergoing treatment which at times may take me away from my normal duties.  I hope to keep this to a minimum, however scheduling of treatments will not be at my discretion.   As I battle through I ask three things: Forgiveness, Understanding and Dignity. 

Over the last few months as my condition has worsened, the discomfort and stress I was feeling at times got the best of me and I may not have provided the support you deserved.  I sincerely apologize for this and ask your forgiveness. 

As I go through this treatment there will be times I will need to delegate some tasks to others.   This transition of tasks may not always go as smoothly as desired, for this reason I ask for your understanding. 

It is human nature that will lead some of you to avoid contacting me, this may be for fear of over taxing or stressing me or other reasons, please don’t avoid me.   The feeling of isolation will deny me the dignity needed to fight on through my challenge.   It has always been and will continue to be my passion to provide the support you need and deserve.  Please allow me the dignity to continue to provide this support.

I thank you all for your continued support and prayers

The response of support and caring is overwhelming.  Below is one of the most touching responses I received.:

I just want you to know your email was so touching and eloquently written. Thank you for writing it and sharing it with us….It truly puts life in perspective, and shows us what an amazing person you are. Of the times I’ve had the pleasure of talking with you, I have come to realize that you are one of the kindest, most good natured, and genuine people I’ve met. You are such an honorable person, and I aspire be as hard working, humble, and authentic as you. I will definitely be praying for you! 

I am feeling humbled.

Confirmation Day

Monday April 21, 2014.  Morning appointment with the gastroenterologist for colonoscopy.  Nervous but hopeful.  Prepped by nurses and then meet the gastroenterologist who explains everything.  Off to sleep I go under anesthesia.  Wake up in recovery room.  Was told later I said some funny things while coming out of anesthesia about being able to drive home right then.  Don't trust someone drunk when they say they can drive, if I can say it then when I am not yet able to raise my head, someone drunk can say it when they are not capable also.

Wait with my wife a very short time for the doctor to come in to explain the findings.  Doctor confirms the worst of the expected possibilities, rectal cancer.  Numb, not wanting to believe it so but knowing it is.  Doctor explain that there is treatment and that I would need surgery.  He referred me to a Dr. Brabbee, a colorectal surgeon,  at Mercy Hospital, a very large hospital in St. Louis. He said he would be discussing me with him shortly and when I got home to call and get an appointment and that if I was not able to get in this week to call him back.  Went home with a new set of worries and concern.  Appointment made with the surgeon for Thursday.

Back to work I went, it is a payroll day, my busiest day of the week.

Later in the day informed key individuals at work and one sister of my diagnosis.  We have decided not to inform children yet, as youngest daughter has final exams this week for spring semester, do not want her to have any new distractions as she pursues her Doctor of Physical Therapy degree, Friday will be soon enough.

This evening chatted with a close friend, spent time comforting each other as her day had been hard too.  Some tears were shed by both of us I am sure.  She said she would be there for me through this. That was very comforting.  We broke the tension by chatting about my kid's Facebook pages because she wanted to see photos of my kids.

A Day of Preparation - Not the preferred way of celebrating Easter.

Sunday, April 20, 2014 a day to prepare for colonoscopy.  Clear liquid diet all day.  Miralax at noon, not really the best Easter dinner I have ever had.  Miralax again two hours later, not really a great Easter dessert.  Yep that product works.  Feeling drained and anxious.

The battle begins - A not so good Good Friday

Evening of April 18, 2014 not feeling well.  Haven't felt well for more than a month.  Stress level high.  Light headed, dizzy and have lost a lot of blood.  Time to go to ER can't go on like this not knowing.

Arrive at ER.  Triage quick.  Mention dizziness and rectal bleeding and within seconds a nurse is behind me with a wheelchair telling me to sit.  Vital signs taken, blood pressure high.  Weight taken, 194 pounds, down 25 pounds, no wonder my pants are getting a bit baggy.

Into treatment room.  Nurse and techs come in.  Hooked up to all the machines.  IV in, first stick not good, need to do another, draw some blood.  Lots of question.  Nurse practitioner in, lots more question many the same as earlier questions, no problem at least the know the answers to those. Doctor in quick, more questions again many repeats.  Rectal exam, oh no fun, no fun at all, pain, room turned black for a second, I don't think they are supposed to be that way. :-)

CT scan ordered. Oh how I love technology.  Pictures of everything inside from lots of angles.  Reading listing many organs, all unremarkable (that is good).  Listing for colon, not so good, thickening at upper rectum or sigmoid colon area.  ER doctor comes in explains the results.  Can't really tell if bad or really bad, need to have colonoscopy, scheduled for Monday morning.  Sent home with instructions for colonoscopy prep and lots of worries.