The routine, starting to get boring

Up again and at the oncology center at 1:30PM. The requisite radiation after a lengthy wait. It seems a lot of people called in due to weather and they were catching up.  From there up a floor to chemo where I received a new pump after another lengthy wait.  They do have comfy recliners however. When they replace the pump they replace everything from the port in my chest to the pump.  It can be painful at first but eventually you get used to it. It seems they didn't have my chemo mix ready and I had to wait 45 minutes for them to locate it.  Slight hiccup and really the only one since I started treatments.  I have discovered since starting treatment I can't stand the smell of coffee. Weird!  Tea it will be. My chemo nurse today was an interesting person and works with the special olympics in St. Joseph county.  We had some interesting conversation about sports, facilities, access to facilities for the special athletes, etc.  It sounded like it is more difficult for them than other athletes.  Challenges, we all have them but some just a bit more difficult.

Just another day in paradise

Woke up and the sun was out.  Still haven't been sleeping well.  Tired and bored with cabin fever from all of this snow.  Had my daily radiation and various checks they do weekly. I have lost almost 14 lbs in two weeks and the swelling from the cancer is starting to subside.  I tried to walk tonight but I have this pesky ear ache I get once or twice a year.  Amoxicillin and Cipro ear drops I have so I started taking them.  I don't need anything else keeping me awake.

Based on what I am seeing in Georgia and Northern Florida I didn't miss much by not being able to take my winter vacation.  Snow, ice, traffic jams, etc.  I have those here. Why drive 1200 miles to get them down there.  But I still miss my Mel's Diner, Iguana Mia, and Mamma Mia's restaurants.  I will beat this and I will be down there as soon as possible.  We Irish have a stubborn streak in us!

On the road, what little there are of our roads right now

Great day to get up, look out, discover my drive is blocked by half the snow in Indiana, and realize I have radiation today. Called by faithful plow boy Bryan May to come over and dig me out.  Dressed in my usual sweat pants and long sleeved t-shirt, put on the parka, opened the garage door and immediately my nose froze shut!  I talked nicely to Anne, my Acura RDX,  and she started right up.  Backed out into what looks like Antarctica on a bad day.  We had one lane plowed down our street and that was done by Bryan!  I made it to the Oncology center, grabbed a big cup of tea (coffee makes me sick now due to the chemo) and went into the waiting room.  As usual, a few jokes about baring the bum. I told them they needed a picture on the wall saying "Here's looking at you!" Levity helps all parties.  Twenty minutes later and I am cooked well. Out the door, into the SUV, and on my way to my sons house.  Grabbed the mail that is still coming to this address even though we have been moved for three years.  Scratched Lucy's ears for awhile (that's his dog!), chatted a bit, and then drove to OC cafe for Swiss steak lunch.  Very good.  I attempted home made vegetable soup last night, and while it wasn't bad, my mom's and my wife's are still my favorites.

I have now been on the internet for five hours, warned numerous times if I venture onto the street I will have to forfeit my oldest child, and will be shot on site due to the bad weather.  Bryan posted a copy of the city ordinance which stated that private vehicles can be confiscated for city use. Yeah, right!  Just try that! My oncology office called me to tell me they will be closed tomorrow due to the snow emergency.  I had to let my body know so everything going on would just pause and wait until they reopened!  You have to love social media and the impact it has had on the weather, be it good or bad. Based on what I have read, we must have at least twenty five feet, drifted taller than five story buildings.  I was just thinking how the blizzard of 78 would have sounded on Facebook.

That's it for the day. Drive safe, be careful, and snuggle up with those you love!

New Pump, dietician meeting, and popcorn

Interesting day.  First radiation, hard enough as it is, but when chemo/radiation induced loosening of the bowels starts, its hard to concentrate getting on the table and assuming the position for radiation.  The indignity of it all.  Got over that, barely!  Next, swapping out the old chemo pump for a new one.  Last night it rudely woke me up beeping and telling me it was empty.  I love technology!  Couldn't it shut itself off? While waiting to have the new pump installed I was offered treats, beverages, etc. to make me comfortable.  I chose ginger ale and popcorn.  Now I have a new pump, it's whirring away nicely and I am told to go see the dietician. It seems they are worried by my ten pound weight loss.  The first thing I was told I can't eat was popcorn. Hello!!! One says no fruit juice, one says, yes, it's ok.  Someone needs to sit everyone down and have a training session, for the staff! It's off to the drug store for some Imodium AD and anti-nausea medication. But not until I nap first.

Dietary changes

Dropped by for an early radiation session at today at 10:30AM and then had lab work and a meeting with my PCP. Down seven lbs, no more canned soup due to sodium in them and no more bottled fruit drinks due to corn syrup.  I have to take an additional 60-70 grams of protein each day.  Dropped by the Vitamin Shoppe on Grape and bought some vanilla flavored whey protein mix and a shaker.  Just downed my first drink. Not bad. Also musty gargle with salt water after every meal due to the impact of the chemo on the mouth. It creates a white filmy fluid in your mouth that sticks to everything and must be rinsed out.  Life changes for sure with this battle.

Sat with my little old lady friend for awhile and we watched Price is Right together.  We laughed and she seemed in a better mood.  It doesn't take much to stop and talk awhile.  Everybody there just loves her.

The start to a new week

Today I had to work out my schedules as they had me making two trips, one for chemo, and later one for radiation. I can't do that. We finally came upon a solution that is workable for both groups.  The first effects of all this are starting to be felt. Nausea at breakfast for the first time.  Having anxiety issues real bad, things like this manifest themselves and then cause me to become extremely anxious.  I am not having any issue with radiation at the moment. The hardest part is getting on the table and assuming the position for my radiation. Not being twenty any longer, moving around can be a real challenge. I'm glad the technicians have a sense of humor.  I have made many friends so far but a little lady that sits by the fireplace has become someone I gravitate to.  I overheard her say to a lady sitting with her that she didn't know how she was going to pay for all this.  At a time like this in your life, sometimes it appears as if vultures come out of the sky to pick your bones clean.  I sat next to her and chatted for awhile and found that she was eighty four and lived alone.  She has a visiting nurse that drops by but otherwise no family.  After she left I sat and looked into the flames and realized that there is always someone who has it worse than you.  I think we will become friends, good friends.

Time away from the routine

For two days I get to escape the routine of driving to the oncology center.  I try to lose myself in basketball games, in car shows on TV, in music, but like a ghost in the night it waits around the corner.  I have this new appendage to my body now and it hangs from my hip. Cancer even forces you to go backward in fashion trends. I have a fanny pack and in that pack I have a chemo pump.  It talks to me every now and then sounding like it is ejecting a DVD from a player.  It sighs and goes back to sleep. If I spring a leak I have an outfit which resembles a hazmat outfit and I must wear it to cleanup the mess. It is that toxic.  It is cumbersome to shower and makes you appreciate your freedoms that much more.  Sleep should come to me easily, at least I thought it would, but its like having a big pad of drawing paper and no pencils.  The littlest memories come back from years ago. Hardly significant, but none the less memories. I've noticed lately that my house breathes at night. It sighs and cracks and pops, and then goes quiet.  I think about the ninety year old lady that lives next door who has macular degeneration and how lonely she must be by herself.  She was the first to welcome us when we moved in.  I remember the days when we first got married and you couldn't put even a piece of paper between us when we slept, it was the touch of love and it reassured us that we were safe from harm. As we age we allow such stupid things to get between us. Things like snoring, and it's to warm,  and on and on.  We become comfortable, we finish each others sentences, we know what food to buy when we shop. Better get those Claussen pickles, no other will do.  I remember our first few months of marriage when I was stationed at MacDill Air Force base in Tampa.  We lived in a one bedroom apartment, second floor, no air conditioning, and only a tiny fan to cool us.  We were dirt poor because Air Force pay seldom makes one financially secure.  My wife worked at a Dairy Queen to make a few extra dollars. We saved our pennies so we would have gas to drive to Clearwater Beach each weekend.  That was our escape from reality.  I hadn't thought about those memories for years but now they seem so much clearer, so much more important, not so trivial any longer.

Hemoglobin is very low

Up at 7:00PM and on the road at 7:40pm to the radiation clinic.  The usual 25 minutes of laying on my stomach in a very uncomfortable position.  Nothing dramatic today.  Next to SJMC to receive two units of blood to raise my HC from 7 to 10.  They are thinking iron and vitamin d infusions next.  It takes 3 hours for each unit of blood so I watched a lot of Andy Griffith, and other old shows on TVland and slept a lot.  For some reason those old shows calm me down. Otherwise a pretty uneventful day!

PET Findings and the first day of chemo/radiation

Arose at 6:30AM after a great nights sleep.  Fumbled around in the shower trying to not get my chemo
port wet. I have these really thin gummy sheets that I must place over the opening.  Of course they can be a pain in the butt trying to get them to lay flat.  Finally dressed comfortably in anticipation of a long stretch sitting and having a million things explained to me.  I will never remember all of the stuff we covered!  The
needle was pushed into the port, secured, and then the chemo was inserted into the pump which is attached to my right side. It looks kind of like a fanny pack.  This lasts roughly seven days and I return for a new load!  Radiation went well, other than me slipping on the table trying to get to the correct position.  I got some great news today from Doctor Ansari and that was the PET scan showed no other cancer in my body.  Lets bring it on and lets get it done.

During my blood tests today it was discovered my HC had dropped to 7 so I am scheduled to get two units of blood tomorrow at SJMC.

Stopped off at the CVS pharmacy to pick up some medicine for potential nausea and some Ativan for anxiety. While there ran into Jodi Atkins and thanked her for her prayers. It was so good seeing her again. Hugs are a great drug!

So far so good and I will just adjust to this new addition to my body!

Pet Scan, the most frightening test I've taken

The hardest part of the test was the 24 hour period where I had to restrict intake of so many things I love. The last bite of food was a scrambled egg and three pieces of bacon four hours prior to the test. No carbohydrates for 24 hours before and no fruit juices.  Blood sugar has to be below 200 or no test..

Arrived at 3:12PM and was immediately taken in to the room where the radioactive fluids were injected into my veins. I was given two hot blankets, a very comfortable recliner, and I fell sound asleep for and hour. This time period was to make sure the fluid had circulated through my body.  I was woken from a sound sleep and taken into the room where the PET scan was performed. For 25 minutes I could not move. No problem, I fell asleep.  I didn't know what to expect. Would they tell me what they found, would they wait to tell me until my doctor was there, or did the silence mean they found nothing. Apprehension is horrible and they gave me some ativan to help with the issue.

I will have tomorrow open and that will be the first day for quite some time.  Well needed rest planned.

Getting ready to pull up the big boy pants again, and start the fight of my life.  Thanks to all of my many friends that have prayed for me, offered assistance for my wife and I, for it means more than you could ever imagine.

Port Installation and More Fluids

4:30AM came quickly after a night of no sleep. Tossing and turning and not much else.  Showered using medicated soap as I was instructed and into my clothes albeit a little gingerly.  The leg is still swollen and because I am favoring it, my right knee is sore as well.  I drove by my sons house on the way to the hospital and he then dropped me off using my SUV.

Ok, I am here, it is 5:30AM, and wondering just what in the world I was doing here two hours before my
surgery was scheduled. Waited in the staging room and watched TV for a good hour and then was asked to
change into my gown and lay back on the bed.  We can put a man on the moon but we still can't develop a hospital gown that is easy to use.  The nurse said this style has been in use for over a hundred years.

About 6:40AM my doctor dropped by and asked what the heck was going on? Evidently no one had told him I was diagnosed with cancer.  He reviewed the documentation and then simply said "a port huh?"  Uh not a warm comfy feeling knowing your doctor walks in cold to the situation.

A port is a device that allows them to give you chemo without having to constantly insert an IV.  Eventually I will have a small pump strapped to my waist that will control the drip.  It was installed on my left side, in front, and just below my collar bone.  The surgery went fine and, yes, there is pain but livable.  When showering I am not to face the shower directly for fear of loosening the edges of the clear plastic covering over my wound.  A pain, yep, but it must be done.

I dropped by OC cafe afterwards and had a swiss steak dinner and did it taste good after fasting for twelve hours.  The doctor told me that I must keep my walking up and eat a good diet and this I will try to do. It's rather hard right now due to the swelling in the leg.

It appears that even within departments, some times coordination isn't done. I had two appointment for Thursday. One at 7:45AM for chemo and one at 8:30AM for radiation. It takes six hours for chemo alone. Can we say oops!  So far the hardest thing has been trying to understand them and double checking their scheduling.

A ray of sunshine on a frightening day

Leaving the Oncology center on January 9th I was hailed by a friend from years back. Someone that I hold dear to my heart. She herself is battling cancer and she lost a husband to it as well.  Peggy Petko and I have know each other since the mid 1970's.  She was the district administrator for District 14 Little League.  She spent a lot of time helping a rookie try to run a park when financial issues were at hand.  We sat and talked for awhile and of course she offered to help me any way I needed.  It is at times like this that you find out who will be there for you.  It helped so much and seeing her smile meant so much to me.

Today at breakfast I talked with one of my waitresses about what happened with the ibuprofen and she said "Oh my God, I take them by the handful!" She had been complaining about severe stomach pains. She is also going to finally get a colonoscopy after I told her how easy it is.  It is well worth the effort to schedule one and based on the Sarah Crane "Sarah Strong"  program we can see it matters little your age.

The start of a long road

The horrible weather January 7th allowed me a brief respite from reality. If you can't get out, you can't very well make an appointment.  That, and the fact I could have been arrested made the decision easier.  They delayed it until today, January 9th.  Fretful night of sleep wrapped around dreams so real I could see the colors.  You wake up in a cold sweat and then the mind starts working.  Sleep won't come. I grab the laptop and lean up in bed hoping for some diversion.  People and places and things come back to you that you haven't thought about for years.  You hunt for them, you wonder how they are, what they are doing?  Finally sleep came but it wasn't sound.

The next day I hopped in the car and was on my way. My wife couldn't join me as her health is not good. Going into something like this you don't want to be alone but you pull up your cowboy boots and head on in.  When I entered I was struck by the sheer number of people, all obviously in various points in their treatment and sitting in the waiting rooms.  The stack of papers I had to fill out was like a small book.  Again my insurance cards were scanned. Again I answered the same questions I had answered just a few days before at SJMC and will do many, many times before this is over.  The old systems analyst and database programmer in me kicks in and I want to dig in and redesign the flawed systems functioning in every medical establishment I have been in over the last few weeks.  Now I see why medical treatment is so expensive.  How the nurses, doctors, and various support personnel live with this I don't know.

You look at each person in the waiting room, you look for smiles, but they are few and far between.  You realize then that what before had been something you thought you knew, you were clueless. You hear terms all the time but you find out you don't really know what they mean.  I watch the TV, some silly talk show with endless yapping about what I don't know.  You hear your name called and you meet your first person that you will become intimate friends with over the period of your treatment.  Lots of technical talk, lots of what we have planned, and one good thing. Doctor Ansari said that based on what they saw in the various tests that there is room to do what they have to do without destroying my rectum but the final decision is up to my surgeon, Edward Delledonne. Definitives is all I want. Something definite!  The next is my radiation doctor Chan.  Young man, starting to silver in his hair, professional and to the point. There are obvious tests he makes, some degrading, some not so. However, they have a common goal and that is to save my life. You look at yourself in the mirror and you try to picture what you will look like a few months down the road.  You pray, you tear up, you want to throw things but what good would that do.

December 28th, 2013

The sound of the siren kept waking me from my sleep induced by blood loss.  It was surreal, having never been in an ambulance with one going off like that.  The young lady who inserted my IV needles had to have worked in the Marines. Quick but rough! Arriving at SJMC and taken to room 5519, high in the sky and no view except into other open windows.  I wore only a long sleeve T-shirt and sweat pants when they took me into the ambulance. I didn't really feel like packing a bag before I went. Ha! Lifted up and onto the bed I assessed my surroundings and deciding escaping from the fifth floor wasn't an option.  Losing blood rapidly is a frightening feeling.  Your mind wants to work but just doesn't. Everything is in slow motion.  HC Blood count was done and came back as 8.4.  An endoscopy was immediately scheduled and performer and some acid reflux was all it found in my esophagus.  Next came the lovely lovely huge box of lemon flavored juice, try it you'll like it.  Eight glasses later I felt like a beach ball and nothing as of yet was stirring.  Remember I was losing blood as well. Now I am going to do a total body flush.  She told me to put toothpicks through my eyeballs to ensure they stay in place.  Hospital humor is well received by people who have no choice.  I asked the nurse wasn't that a lot of fluids to be leaving my body at the same time. I mean, how much blood do we have in our body?  To make this part short because bowel movements are not something you read about except on bathroom walls, I will just say it worked well. I felt like a new Mercedes, all nice and shiny inside. .

Off to the colonoscopy. The nicest nurse asked me if I wanted warmed blankets and of course I said yes.  I remember this feeling in my mothers womb,  She was asking me questions and the next thing I remember hearing was the doctor say we needed a surgeon and the word cancer.  Remember I was groggy and out of it. Not what you want to hear or have heard as the doctor later told me.  Since my wife wasn't with me I had him call my wife and explain what he had seen.  He was very patient.  The next issue was to insure it hadn't spread outside the colon walls and into the lymph nodes. A colorectal ultrasound was performed and gave positive results.

OK, you have just heard the word Cancer, you shudder, you cry, you want to say why me but for some reason I didn't.  I just sat there and asked whats next.  Get it done, I am needed in Florida. Beaches are missing me and calling my name. Gruel landlady is snickering to herself that now I can double dip, take his money and rent it again for the same price to someone else.  Common common practice in Florida.  The power of social media is about to be shown!

I had a little red haired nurse named Dominique who I just clicked with after she found out I had coached baseball at Bethel College.. She was a graduate from Bethel's School of Nursing. She ran track and cross country for Tony Natalie.  She was the one who finally told me what was happening. She put her arms around my neck and she prayed with me.  For the next three days she was my nurse and we became quite close.  A pat here, a hug there, we prayed together, and her smile is what kept me going.

The following morning my family doctor came in and again told me everything. But this time he stopped and told me his prostate cancer was still an issue and that he was told he had ten years and he already had a headstart into that ten years. Doc and I are friends, not your typical doctor/patient relationship.  We both love Jimmy Buffett. Back when he was down from finding out about his cancer I bought him a Jimmy Buffett DVD/CD set of three discs.  I was discharged on New Years eve with so many papers, appointments, that it overwhelmed me.

Day one, a rough first step

The evening of December 27th, 2013, began much like any other evening for me. Slipped into my running outfit, grabbed a bottle of water, and off I went to run. It was a cool night, normal for this time of year and there was some snow on the ground. As usual I saw familiar faces along the way, house lights left on, the crows sitting by the river, a few kids hanging around but generally a quiet lonely night. As usual I turned on my MP3 player to the same music I have been listening to for almost three years and made a mental note to myself that I need to update my selection.  Earlier that night I had taken three ibuprofen in anticipation of some back pain I had felt twinging earlier.  I never gave it a thought. Why should I worry? I've never even had the flu in my life.  Very healthy body in general, be it at times just a bit to heavy, but we have all had that battle.  The time went quickly, the air felt good, the snow under the street lamps was pretty and I felt great.  I was excited as in a few days we would be leaving for our condo in Cape Coral, Florida.  It is the one thing my wife and I really look forward to.  It is a physical and mental escape for both of us.  I completed my four miles, stopped by the 7-11 to buy a hot chocolate, and then headed for home.  Listening to the radio on the way home, a song I loved came on.  It was Jimmy Buffett's Margaritaville. I've loved this song since its release in 1976. It is special as both of our boys learned to sing it on the way to Sanibel Island on our first family vacation in March of 1976,  I felt good, nothing not even a back ache or a sniffle.  I arrived back home and around 10:30PM I decided to check my Facebook and then get some sleep. I noticed a slight dizziness but forgot about it. Attributed it to getting old. After signing off Facebook I arose to go to the bedroom. More dizziness so I stopped and leaned against the door. Nausea over came me. I barely made it to the bathroom before it happened.  When one sees blood where blood shouldn't be, you tend to stop and assess.  I told my wife to call 911.  When they arrived my blood pressure had fallen to 76/41.  I was scared, not for me so much but because my wife has serious heart problems.  This couldn't be good for her. Panic is not in my repertoire, but I did that night. This is twice in the last three years that this has happened. The first time it was blamed on a small hard coated 81mg aspirin being lodged in my small intestine. I was given 8 units of blood over a 10 day period that time.  Hemoglobin was at 7.2. This time it was 8.4.  (For reference purposes I have added a table of normal values.

Age Group Hemoglobin Count (gm/dl)
Newborn Babies 17- 22
Children 11-13
Adults (Male) 14-18
Adults (Female) 12-16
Elderly (Male) 12.4-14.9
Elderly (Female) 11.7-13.8

Read more at Buzzle: http://www.buzzle.com/articles/normal-hemoglobin-levels.html)

Tomorrow I will describe the hospital visit and show what and how it was done.