The final days of Chemo and Radiation

Tomorrow is my final day of chemo and radiation. I am sore everywhere it is possible to be sore. Everyday I see the same faces, the same nurses and practitioners, the same sad faces on so many many people. The dietitian is pregnant as well as the radiation specialist. I think about the irony of the beginning of life cycles and the smiles on their faces when they talk about their future families. I only hope that when they get to our ages there is a cure but somehow I doubt there will be. I always get a kick out of driving through the parking garages at the hospitals and look at the cars of the doctors and admins. I see Porsches, Bentleys, a Rolls Royce, a red Ferrari 458 Italia, Mercedes up the wazoo, you name it and all expensive. All parked next to the doors and a short walk from the entrance while the many patients and visitors drive around in circles looking for a place to park. My radiation doctor told me today that they push you to the max and then back off just enough to see what you can handle. He said yeah, it might hurt a little but better than not doing it. I looked at him for a few minutes and he could tell I was constructing a well thought response but what I had in mind would have been inappropriate in that I am not licensed to carry. I wonder if he had to make that call on a loved one if he would have been so callous in his remark. So my next step is somewhere between four weeks and eight weeks I will have the surgery. No one has appraised me as to what to expect and I imagine it will be a surprise as things seem to be lately. In my recovery plan I am to follow with 24-30 weeks of follow up chemo. I just came off one of the most potent chemos there is 5-FU. So far my hair is still here, softer and thinner, but still here. I would gladly give my hair to a young lady from our Mishawaka Northside Little League days by the name of Kristi. She shows how to fight this way more than I can and I admire her so much. The next step, the next challenge, and on top of it the next ACA challenge upcoming. God, my wife, and my friends are holding me up right now. I am going to take a week away in early March to just visit a new friend I have made on Facebook, see some relatives in Ohio, and find a place I can relax and just read. Perspective I guess and finding a room with a fireplace and an Irish setter laying next to it might be a little hard to find in Northeast Ohio.

No more dresser tops

Funny how you take for granted everything. Like your dresser top, or sink top, or medicine cabinet shelves.  My dresser is huge, lots of space but it is full of medicines grouped by time of day.  Early morning, after breakfast, lunch, afternoon, after dinner and before bed.  There are all size bottles. There are even bottles of lidocaine mouth rinse and a new product called Mu-Guard which I am a guinea pig on and they want my input (it doesn't work!) There are tablets to boost my immune, blood count, you name it. There is oxycodone to help me handle foot, mouth, and finger pain.  They all have things in common and that is tops I can't get off because of the lack of strength and the burning in my hands.  I have told them please no child proof tops but they ignore me.

Now lets go to the sink top. Special toothpastes that are natural and don't burn me more.  TOM's of Maine is a life saver.  Next to them are my diabetes medicines and cholesterol drugs plus normal pain medicines such as Tylenol. Little used right now but the only kind I can take.  Special body rinse to keep infection from starting at my chemo port site.  There are other creams used to dull the pain of radiation and it's effects.  I have a saline sinus rinse I must use that practically drowns me when I use it but I need to breath.

My medicine cabinet sits on the floor in the bed room waiting to be installed but that won't happen for awhile because I can't hold it up.

My wife say I am grumpy, yep I guess I am.

Unexpected and so ill timed

I guess sometimes you ask yourself where do you get the extra to pull from when you feel tapped out, you ache, you want to scream, you want to just have a single day of normalcy. The kind of day you wake up and say to yourself "what am I going to do today and smile and run off to do it!"  Those days don't seem to exist right now.  I struggle to understand my wife's illness, her emotions, how to make her fill loved.  Sometimes you just don't have an answer.  Add to it a very depressing winter season this year and sometimes it feels like a mountain to high to climb.  When I need my kids the most, they are busy, working, living life.  But how do you make someone realize that things are starting to slow down and fail without injecting yourself into their busy lives?  Digging through picture books is great but it opens up sentimental memories and makes it worse and you see what has passed you by and is to late to go back and get it again.  There are so many people in my life I love, so many that don't even know it, and I hurriedly make plans to tell them and never do.  What am I waiting for?  Miracles I guess, but lately I haven't been walking on water.  I want what time I have left to mean something to somebody, I want to write the things people want to read and for them to mean something but I can't force them out. What used to be so full of words, and verse, is now so hard to reach and to say what I need to feel and say. Losing the feeling in your finger tips and feet, the ability to taste, the constant burning from radiation makes you feel like anything but alive.  You say I will beat this but then you see them struggling to find a way to help you handle all of the side effects and you wonder.  You have accidents you never had,  you feel less than a human. You look in the mirror and you watch the effects it has on your face and hands, your looks, the effects it has on you.  The hair that used to be silver is now gray, the smile is now wrinkles, and the condition you worked so hard to maintain is now gone.  That's me, now trying to put Sharon's life back in order is priority one because I realized it is all mute without her health.  You take everything for granted. You let petty arguments between family members become life disrupting events, you tear apart what was once a fortress and now it is crumbling and you wonder how and why it all began.  The words "I and Love and You" become harder to say.  Forget about "I'm sorry!"  It's to hard to say.

https://www.youtube.com/watch?v=9rqsltr5vsE&list=PLD10DB4A824F863BD

This song has a very special meaning to me as my niece also loves it and we are two peas in a pod.  Simply highlight the link, paste it into a browser, hit enter, and it will open.  I hope you enjoy it as much as I do.

God bless!

A reprieve

I was called today and told that the fiber optic network at the oncology center was down and they couldn't do my radiation today.  Felt good and probably necessary as my feet and hands are so swollen I doubt I could walk up to and then enter the place.  I soaked them in Epson salts to get so relief and they do feel slightly better.  My wife is down with a cold I gave her which leads to lots of coughing and blowing of noses. Sounds like a group of sick geese snorting!  Doctor said I need to drink milk shakes as it helps to relieve the dryness in my mouth and lips. Tonight, a trip to McDonald's is in the works. Whoopee! I am craving pizza right now but my lips just couldn't handle the spicy sauce.  Everything bland, everything soft, everything just flat boring!  Hey, I'm Irish so no quit!  Now if I could just get that attitude across to the Notre Dame men's basketball team we'd be all set!

Special place...........

It's the weekend

A needed break for two days.  Sometimes you just want to get away by yourself, to think, to try and get back to a feeling of normalcy.  Maybe a Notre Dame game, yep another loss will do that. IU game, nope they lose too!  Normal as you can get.  I have a cold hanging on for a week now. I've never had anything last more than a day. I drove to the drug store to pick up two prescriptions. What kind of drug store closes the prescription counter at 6:00 PM on a Saturday? More snow, more cold, I miss Florida!  It is probably good I didn't make the trip to Florida as my furnace went out yesterday and I would have returned to a cold house and broken water pipes.  Looking on the bright side I guess.

It seems like when you tell some people you have cancer they back away from you. I guess they don't want to say the wrong thing. That is the last thing I want someone to do.  There is nothing you can say that is wrong.  I need you to be my friend like before.  I want you to remain the same.  I don't want sympathy, I want friendship.  Yesterday when I went in for radiation I saw an old friend, Jerry Pelletier, sitting in the waiting room.  We used to be neighbors years ago and our kids played together in Little League and on the high school baseball team.  He is a great man. Never a bad word about anybody.  We talked for a brief period and he updated me on his condition. He was struggling with a decision and I could tell it weighed heavily on his mind.  I wish I could snap my fingers and everything would be fine for everyone but I can't so I try to be a good listener.

Yesterday a lady went around in the waiting room giving out doughnuts from Krispy Kreme from a pink Krispy Kreme box.  Knowing me and a doughnut I readily accepted but it made me appreciate a company that would go out of their way to print boxes especially for breast cancer and donate doughnuts.  Little things mean so much.  It added a homey feeling to a usually dreary waiting room.

Now the side effects

Woke up this morning to some new side effects. Lower lip was a mass of little blisters, the fingers on my hands were sore and swollen and so were both feet. I could barely walk.  The PCP gave me some prescriptions for a steroid, 6 day cycle of pills diminishing by one pill each day, some steroids by IV, and some antibiotic for my lip plus a very expensive lotion for my hands and feet.  My dresser top looks like a pharmacy right now.  It's been two days and is slowly working.  I am now over half way through my treatments and both doctors say I am doing great. My radiation nurse, who likes to flatter me, told me I was their handsomest customer. I said, whats that mean? That I am the only one with hair! A little levity always helps.  I finally got all of my appointments moved to 1:15PM and this allows me more flexibility in doing things in the morning.

Thanks to all my friends who made their Facebook profiles purple on National Cancer Day.  It means so much! I'll keep up the good fight, you keep praying for all who are fighting this. God bless!

Someday I will.....

You use phrases all the time that you never really think about until you are confronted with a life and death situation. How many times have you said "Someday I will..." and then never followed up?  Those phrases take on new meaning, they are fact and must be executed.  So many times I have said "time for a day at Wrigley Field" or  "Gee, I haven't been the the Shedd Aquarium since the kids were young."  I think back on those times and I ask myself where did the days go?  Why was I too busy?  What kept me from living each day to its fullest? I guess we call it life but it wasn't what it should have been.  It should have been carefree, silly, full of fun, but it was twelve hour days, six days a week sometimes, and seldom fun.  It was late night calls from work, trips in driving groggy, logging on at four in the morning in a dark office, and trying to get your mind working.  It was looking at computer system dumps, reams and reams of paper, or later in life browsing huge dumps online, trying to locate what the problem was.  The mind does silly things when it is tired and seldom functions quite like you wish it would. You come home, the kids have left for school, the wife has went to work, and you try to sleep.  It was called survival, food on the table, school clothes, house payments, car payments, save a little for a vacation.  Life was passing me by and I didn't realize it. Knowing now what I know, I would never have worked so hard or so long.  I would have hugged my wife and kids more, I would have danced more, I would have kept those "Someday I will...." promises.