Wednesday, April 30, 2014

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.


Tuesday, April 29, 2014

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?

Monday, April 28, 2014

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.

Sunday, April 27, 2014

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.

Friday, April 25, 2014

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.

Thursday, April 24, 2014

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.

Tuesday, April 22, 2014

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.

Monday, April 21, 2014

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.

Sunday, April 20, 2014

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.

Friday, April 18, 2014

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.