Monday, May 26, 2014

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.

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


Friday, May 16, 2014

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.

Thursday, May 15, 2014

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.

Wednesday, May 14, 2014

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.

Tuesday, May 13, 2014

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.

Monday, May 12, 2014

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.

Sunday, May 11, 2014

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.


Friday, May 9, 2014

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!!!

Thursday, May 8, 2014

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.

Wednesday, May 7, 2014

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.



Tuesday, May 6, 2014

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.

Monday, May 5, 2014

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.

Sunday, May 4, 2014

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.

Saturday, May 3, 2014

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

Friday, May 2, 2014

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

Thursday, May 1, 2014

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.

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