My Cancer Journey in Chapters

[3mtrship]

Chapter 1

I want to tell my cancer story.

It starts in mid 2004 at the local blood bank where I am an over 16 Gal. donor. We are doing the initial workup and the nurse says "Jim, I don't like the way your heart sounds today so here is a permission slip for your Dr. to sign after you see him." "But I don't have a Dr." "Why not?" "I never been sick."

It's raining outside which is why I went to give blood after lunch. I just need a Dr. to sign this stupid form, should be no big deal, right? Boy am I a novice.

I first go to our major hospital with over 50 Heart Specialists on staff and say "Hey I need someone to check my heart." Wrong thing to say there. Man people start running and everybody gathers around, "Are you all right, just lay down on the carpet while we get a wheelchair or a gerney." "No, No I'm fine but I need somebody to check my heart now and sign my slip so I can give blood this afternoon." "Things don't work that around here Sir." All of a sudden it was cooler in that place. "We could make an appoinment for next week Sir." "Naw, forget it, I'll just get it done somewhere else, Goodby."

I then go to a Heart Association, which is a collection of heart Dr's. They say appointments are being made for next month. "Bye."

Man, I'm halfway mad but I go home and get a cup of coffee and cool down.

Hummm, maybe that Dr. who's job I finished last month can sign this so I call his office around 4:30 PM and he answers the phone. "What do you need Jim?" "Someone to listen to my heart Sir." "Can you be here at 7:30m AM tomorrow?" "Yes Sir." "See you then."

He listens for about 2 minutes hooks up a ECG machine reads the printout and says, "Where's the paper? I'll sign, Oh and almost as an after thought, by the way, when was the last time you had a physical?" " My Army discharge in 1969." " But Jim it's 2004." "I know but I've never been sick Doc." " I gotta an idea Jim. Go to my friend around the corner who is building his practice and get a complete physical ON ME." "Really Doc, OK."

I go give blood and only lose about 3 hrs. But I'm self employed so who cares. But Fate steps in where wisdom never resided.

Next day I get a call from the Dr. to pick up a prescription for a full blood panel workup and an appoinment card. Blood test and appointment in 1 week. Thats the way to do medicine. You just have to push a little. Well, we will see.

He gives me a through going over and ends with the surprise. "Jim, you have an elevated PSA of 13.8. Now this does not mean you have cancer but with your permission I will give you a referal to the same Urologist I gave my Father and for the same reason. (Note: This will come up again later.)

The following week he gives me the famous DRE and orders biopsy and bone scan for the following week.

Results appoinment with the request for my wifes attendance. "Jim , you have prostate cancer graded T2c Gleasons grade 3+4. Somewhere around that time the appointment was over for me. He kept talking but I did not hear.

My wife continued to collect and harvest taking notes and asking questions. To this day I have absolutely no memory of what happened after.

He did tell for us to go home and later we were to see him in a couple of weeks to talk some more. At that next appointment he spent over an hour filling us in on the many choices for treatment. He discussed each in detail and she took notes again but I heard better also and we were able to talk about it some more privately after that second consult.

I spoke to my GP Dr. again and he assured me this guy was "A" grade so we returned and said cut it out.

Well we had bad weather and some schedule conflicts with my work which delayed the surgery into deep winter. I finally get a call the operating room is free on 14 Feb 2005. "How about it Mr. Jim was the question?" Ironic right. "Ya considering what your getting ready to do to me WHY NOT. Schedule it."

So Fate steps in again. In my journey with cancer there have been some fateful points that changed the course of my path forever. I look back now and can see more clearly where I've been and how I got here.

They roll me in to the Operating room wide awake and leave me off to the side while they quickly get things ready. In 3-5 minutes the surgeon steps over to the gerney and starts to roll me over to the well lite area of the room. I ask them both to pause for a moment and think about what they were getting ready to do to me on what day they were doing it. They both smiled big and I asked them to be on their "A" game and do the best they could. I believe they did just that.

Surgery starts around 3;30 PM done at 5:30 PM back in my room and awake by 9 PM one hurten puppy. Wife asks if she can go home and smiles. I'm hurt but alive and she can rest now. Discharged around 5 PM the next day and home to the couch with two new bags, large and small. I think 250 ml and 1000 ml. A daily traveler and an over night bag. Next day I'm up and in the car for a brief talk with neighbors on the next block.

Man my butt hurts. How be I get you one of those cheap donut floaties for pools at the Dollar Store. Ya, lets try that. Man I'm in heaven with this thing, thanks.

That second night I get up to drain my big bag and walk into the bathroom around 2 AM and suddenly I get a sharp pain in my bladder and a little blood pushes out the tip of my penis past the rubber tube and makes a mess on the tile floor. Probably a teaspoon full but it looked like more and scared us both. I call the Dr. who answers quickly and asks if it stopped. "YES." "Sounds like a bladder spasm. We don't know why that happens but we think the bladder get mad because we cut it. Most times they only happen once but if you continue to bleed call us right away and we will meet you in ER immediately. Oh, and by the way, I'm real glad to hear you are drinking enough to fill the big bag at night. You need to keep up your intake to flush the bladder and start the healing process move forward as quick as possible."

"Your rectum will take a while longer to wake up and that can be a mess when its time, so just use the bath tub as toilet paper. Yes 5-6 times a day in the tub with antibiotic cream on the tip of your penis and rub it in real well. Can't hurt, might help. Either way it feels good to be clean. Infection is our mutual enemy."

The following day I have company. My granddaughter and her DOG. The danged DOG bit my floaty and pisssss it goes down. I almost cried. As soon as she left I started to speak and my wife says "Yes, I know and I will be right back."

After a few days I find draining the bag is painful inside my body. Hummm, but if I lift the bag so it is almost the same elevation as my bladder it drains slower but less painful. I can live with less pain.

Appetite is coming back and 15 Days later I'm in to the Urologist office to get the catheter out. Back to a patient room after "weigh in" and here comes a cute "new to me" nurse. "Good morning sir, I'm here to remove your tube, jump up on the table please and open your gown for me." She inserts a syringe tip into that small second tube on the hose, withdraws the sterile water and pulls it out in 3 seconds. No pain, no drama and no name and walks out of the room after having me take a leak and handing me a pad, "The Dr. will be here in a moment."

Who was that masked bandit?

Later as we leave I see the same nurse in the hall. I walk over and introduce myself. "You look familiar Sir, where have we met." It was at that moment I was again reminded that cancer peels away the layers we use to protect our personal selves. It reintroduces a health measure of "humility" back into our lives and vanity disappears.

In the car my wife says "Way were you hitting on that cute nurse?" "Because she hit on me first was my answer?" Well if looks could kill, I guess you know where I would be by now but I dodged another bullit and here I thought cancer was my only enemy.

It's been over 5 years and the events stick fresh in my mind as part a road I never chose to take. Yours will be different but no less important to you.

I wish you well on your journey and try to notice the flowers along the path your life will take now. You are changed forever but still worthwhile and so is your life.

Cancer changes us all and it is always scary.

I will talk more about other effects to us soon but one the biggest differences in me now is that I cry more easily.

Jim

Let me know with your feedback, whether you want the other 2 Chapters.

[3mtrship]

I hope by writing I will give others the courage to deal with some of the sexual side issues that can arise between any couple when dealing with serious health issues in one or both of them. Sex is so important to us we must realize that many times it requires work to maintain enough quanity and quality to sustain. It will not always come as easy as it did when we were young. We may have to find new ways of connecting.

Chapter 2

So I begin healing. I wean myself off the small pads after a couple of weeks. Dribbles stop unless I turn too quick or take steps too fast. You know when we start wearing pads we think everybody in the world knows. We are embarrased to admit the truth that we need them at all. Nobody knows people unless you tell them. You might run out of a conversation at unexpected times but its OK. Infection is your number one enemy. Keep your parts scrupulusly clean and dry.

Use creams and baby your skin. It feels good and please allow and encourage her to help you. Reach back into the pickle barrel of sexual posssiblities and find out what makes you feel good now. Please be aware that somethings might change but that is OK. I mean who would have thought that we would even consider that type of sexual adventure with our mates before CANCER. Some surprises might await along with some disppointments but that is OK. It is your life now after CANCER. You have a right and obligation to find what works now. Finding that will greatly improve the quality of your life and taking that journey gives you both more reasons to become reinterested in the other.

Cancer is not something we do alone very well, so reachout and ask for help. It will help keep you grounded and moving forward.

So about 10 weeks after surgery I have my first PSA checkup. Less then 0.01 which means a below the radar reading. At that time my Urologist says he has consulted with the same Radiation Oncologist he sent his Mother to for Breast Cancer and has already discussed my case with him. Will I take his recommendation? "Yes Sir." "Here, your appointment is on this card and good luck Jim." (See, this is one of many little personal actions never invited but welcome on my Cancer road.)

The fact that he had detailed conversation about me with a new Dr. is noteworthy. My Cancer journey has had many surprise twists and turns. A number of people reached out to help. At the time they reached out I was very scared but learning. I also was a little selfish but I learned not to be so as time passed and I was still alive.

I go meet this new Radiation Dr. and ask lots of questions and take notes. See, I'm learning. I am a little slow but I am learning. Well apparently few patients take that much interest in their treatment but this Dr. takes an hour with me and shows me the 3 D digital software in color he will use to form the lead sheilds to the shape the beam hitting me from each 90 degree angle. My body will be in the middle and they will hit me from every 1/4 circle. The exact area he wants to hit has an odd shape so different filters were required for each of the 4 shots. The success of his treatment of me depends on the accuracy of this targeting plan. The tissue dies at the spot the beams cross inside my body. The other tissue tolerates the passage but potentially protests radiation also. The delicate dance between what is needed to kill any remaining Cancer and what my body can tolerate is his job. I got tatooed for targeting purposes and started 42 treatments delivered 5 days a week till complete. After a week I had mild diarea but half an imodium fixed that.

I had an important thing occur one treatment morning. I was the second, at 8:15, appointment. The operator had been on vacation but a scheduling mix up occured about his return and somebody did not show up to operate the machine on time. A desparate call went out but still after that person arrived it takes about 30 minutes to warm up the machine and check the output and targeting accuracy before we can proceed. That gave me time to read the paper and have a cup of coffee and maybe a donut. The waiting room started to filled up. I had never seen that many Cancer patients together at one time.

I returned from the donut with coffee and a glass of water just as a new arrival sat in the chair next to mine. "Where did you get that water Sir?" "Here, you take this one, I can get more easily and if you want more speak up I will be happy to get it. It's in that center hall by the way." and he looked away. Most people looked away including me. I did not want to dwell on their misfortune or pain. Furtive glances at many Cancer patients is a rude awakening.

One would think I gave him gold and he smiled and these thoughts passed through my mind. Before me sits a group of people all of which have Cancer. Most I would never notice in a crowd as being any different from the rest. A few appear close to death but not many. Most have far bigger problems then me. I am still working and in love. My life is whole and worth living fully. I better do that.

We had made some progress on the physical side of our lives before radiation. We decided to include all options and see what worked now. Well radiation set me back months. We found ways to tell the other how much we loved. Climaxes were present for both but full intercourse was a ways in the future. I was clean, had soft skin and smelled good but no penetration. We used all the samples and bought a few more but about a 1 1/2 years goes by with little change.

A birthday pool party for a Grandson gets us all together, 20-30 people. My daughter in law is of Cuban heritege. She was sisters. One of those sisters is a knockout and she has a new bikini. Waterpolo in the pool and I'm sitting in the cabana with ice tea watching that bikini. My goodness it starts. It grows, it bulges. it protrudes and felt wonderful but embarrasing. I mean "HELLO BUDDY, WELCOME BACK. WHERE HAVE YOU BEEN SO LONG" I quickly grabbed a towel and went to the bathroom. It went down just as quick as it came up and before I could do anything about it too, darned.

After we drove away hours later, my wife says "Was that what I think it was?" "YES." "Lets go invite him back, I want to see him again."

During those next months he accepted our invitations once in a while and showed up. Each appearance was a surprise because we could never quite figure out how to phrase the invitation.

It was also during that time some of the pressure or selfishness began to ease and I lightened up. I was alive after all. I decided to thank those who had helped me.

I sat down and wrote personal letters to each of my care givers including my wife. In those letters I expressed my appreciation for some of the things they did for me. I delivered each letter during normal checkup appointments and made the person sit down while I stood. You know they make you sit down for a reason. I made them sit for the same reason and read each their letter and then signed thru the tears running down my cheeks. The reactions were precious.

My Urologist gave me a hug. My Radiation Oncologist cried. My personal GP (remember from above?) say's. "You know Jim, I gave you the same advice I gave my Dad. Here you sit 2 years later healthy. I just buried my Father a couple of weeks ago." "Do You mean?" "Yes, he did not take my advice. He went to some hack on the East coast and got butchered. They missed removing the cancer completely and botched the bladder connection. He died with no bowel control, 2 bags and painfully slow. To say I appreciate your letter is an understatement. I will treasure it for the rest off my life and Thank You."

So gang we arrive at the end of this chapter in My Cancer Story. There are a few things I wish to bring to your attention. Open your heart and your mind and allow others to walk in. Accept their help and thank them. Find that part of you that allows you to be nutured in the most basic part of your heart. Find the humility of a child again. Admit you need help and then step back and allow it to happen. You can not help but benefit no matter the outcome from your Cancer.

My path has been aided by many and I have benefitted by getting to know them as they worked on me.

I am the same as I was? NO. Am I OK? YES. Is this life I have worth living? YES.

Kind Regards Jim

[3mtrship]

Well I guess I'm done so here goes gang.

Chapter 3 of our story back from the brink of ED forever.

Maybe I should have called this thread "Sex, Drugs and Rock & Roll." Now that I have your attention let's continue.

I have waited to write this Chapter although it starts soon after radiation ended and continues to this day.

I think the fact that I left this for last tells you something about me. This is the area of my story most difficult to write about because it is so personal.
Before starting this Chapter I went back to the beginning of this bulletin board and started reading towards today. I wanted to get a feel for the flavor of the topics and study the hit counts a little. I also wanted to abide by the principles of decency requested. I sure hope I do that.

I would say that sex and intimacy are of major importance to both sexes and of any personal persuasion. Once I went and did a little background reading I formed the following opinion.

How we handle sex is of major importance and great interest to others. You know why I say that? Simple. Because it’s true.

Anyway here goes.

I had a rude awakening during the catheter removal. My wife got jealous when I introduced myself to a cute nurse as we were leaving, remember. Well, that should have been my signal of what the future held but stupid me, I missed it. I go plodding home with a BIG piss pad on when I knew I didn't need that thing and only wore it to humor that nurse. We walk in the door at home and I go to the bathroom to check and dispose of that thing. Boy, am I glad it was there. You see that stuff that runs out is the same temperature as us. I never felt is coming out. I had pissed myself.

She asked what size I thought I might like. Well, heck lady I've never been shopping for pads. How do I know? Just go get me what you think I need and make it a small box so we can switch cheap. So I started potty training again.

The muscles that control the flow are buried deep. The tissues that were operated on are also buried deep. Some tissue was removed. So I have to retrain the muscles that control both ends and they are pushing on less tissue, hummm. My Dr. said use the bathtub as toilet paper. Stay scrupulously clean to avoid infection. He went on to say damaged tissues are wet and heal slow so be patient with yourself.

He gave me a lifting limit and certain walking and exercise instructions, a couple of packs of ED medications, and antibiotic regimen for 5 more days and a bill for his services, WOW. Thank goodness for insurance, eh.

I moved onto the couch and started this next phase of my recovery. Getting back to "normal."

I realized I did not know what "normal" was any more. I have never had so much time to think before. Days run into weeks. People would visit but don't stay long. We'd go for rides, her driving all the time for a month. My life has never been like that, dependent. I used to work 5-6 days a week and made a decent living for us. We have 6 kids so I sat down and wrote letters to each. Then one day I'm sitting at the computer and I start to think about sex. I wonder.

Well that first roam around the Net led to more roams. Eventually a few more weeks pass and I got really randy and she's asleep and if I just move my hand down to about here it feels real good. That routine happened for a while with no more reaction from my body then mild excitement and slight filling out but definitely not an erection. I wonder if it's time to put some of those pills in the mix. I'll try that tomorrow night, yea, after she is asleep.

So I plan carefully so she won't know. I carry her all over town so she will be tired and sleep soundly. It's dark and I take a Cialis around 11 PM. I play for a couple of hours and go to bed not satisfied and alone.
We get a couple of months from surgery and my radiation starts in late May after I was healed inside. Anything I accomplished during those few months went away and I went back to square one by the time treatments stopped. Also during that time I lost my brother and my best friend to cancer both out of town.

I sometimes wondered how much more I could carry for a while. I was real scared when I buried them.

Am I next? Will my wife love me now?

We get through that and come back home and I start roaming again late at night on the Net. One of those nights I look up at door of the extra bedroom where we keep the computer and I see her and she is crying. She sits down and says "Please understand I am not sad that you are doing that. I am sad you are doing that without me. Cancer is not yours alone, it affects me and us. I have been walking around on tippy toes trying to be helpful, supportive and allow you time to heal. That type of walking stops now." "In our lives we have done many things together, most with the help and support of the other.

"That is what couples do they help and support. Do you think you are the only one with sexual needs that should be satisfied by this marriage? People have many senses like sight, sound, taste and touch. We left some of those options long ago. Now your hurt and I want to help. I will help bring some of those variables back into our lives if you allow me too. If you do not I have some other decisions to make. So for right now go back to what you were doing but I want this selfishness to stop."

"I will not allow you to turn into a selfish old man while you are with me. I want to get old together with you. There is a big difference."

So we started what I would call "real recovery." We talked first and then took action. We bathed, we rubbed, we oiled, we watched, we listened and we tasted and we loved again in new ways. I took pills and we pumped to condition tissues for our future use if they ever decided to swell up again. As I told you before, I knew that thing would work if we did some things but I was afraid of taking those first steps and started alone. That was a BIG mistake, mine, all mine and I'm sorry.

I almost threw our future away, she helped me bring it back. I am soon 66 and she is 71. Some of these things that have happened may be age related, some of the things are cancer related. We cannot tell the difference, we are to close.

Comments on any part of this story are always Welcome.

And Psssst lean over so you can hear me, "She still loves me and we have found our new normal." None of us wanted cancer and we are all changed by it. Our task as patients, lovers, fathers and friends is to find our individual New Normal. Cancer will force the issue right up into your face and drag you kicking and screaming into the rest your life.

Kind Regards Jim