Richard's Journey

Glad things are finally underway Richard! I'll pray for smooth sailing for your treatments and a cancer free future! Thanks for sharing your story and hang in there!!

Doting

Hi Richard,
I remember driving to the beach the day we met. Traffic added an hour because of that construction.

Stay cool. The hot flashes may still be on their way. It took 4 months for me. But worry not. If they start, you can join Walt and myself in our home decorating venture. The important question? Have you started watching the cooking shows yet?

Your brother in the Lord,

Tony

Norskie:

Must have missed the post - didn't know you were doing proton - where is it being done??

Best to you.   Dutch

June 9th = Today as my treatment was finishing up an alarm goes off.  I felt I had a gas bubble moving through me and wondered if that was what the alarm was about (lol).  At first they came in and  told me no problem just a test but then I was told to leave the building as it was an actual fire.  Here I am in a skimy hospital gown that barely covers my hinney.  In my hurry to get into the gowning room and get dressed I ripped another place on my arm.  This time it is on my left arm just below the elbow.  I was probably the past patient out of the building, as I walked out the sidewalk was full of those who were waiting for treatment.  I guess some will be delayed a while.  The fire department was there as we left and we do not know what actually happened.  I will find out tomorrow at 5:40 unless I get a call sooner. 

June 11th = Saw Dr. Nichols for my weekly appointment after treatment.  Everything on my end is about the same.  Having a few night time hot flashes finally but nothing earth shaking.

Dr. Nichols kind of dropped a bomb shell on us when he indicated he thought the lymph node was involved. He had always given us the impression that the lympn nodes were not involved even though there was that possibility.   When I asked why when the Prostascint was negative.  His response was that the CT and PET both indicated it and with my Gleason it was mostly likely.  We already knew about the positive PET results but the CT was something out of the blue to us as we had always been under the impression the CTs were all clear and  this new information is/was kind of a shock.  While we know I am getting IMRT because of the possible lymph node involvement we thought it was not likely and now feel it is most likely.  It does not change our treatment options as once the IMRT to the pelvic area is done in a couple weeks we will be getting the prostate and the lymph node hit with Protons. 

We learned today from another new patient that UFPTI along with LLUMC are doing a trial of about 160 patients with only 29 Proton treatments of a higher dose rate. I believe the total accumulated dose will be about the same. 

Richard & Debbie

Great job, Richard,
I remember the fatigue well and it does lighten up after treatment. Glad to see you are doing so well and I look forward to your graduation.



Tony

Long and some might be a repeat of other topics - sorry for any confusion

June 18th
I have been taking blood thinner for over 12 years and have to get a monthly blood test to ensure that my clotting time is good. My normal INR is about 2.5 where normal blood without a thinner is 1.0. At 6 and above you can start to bleed internally. I actually had them send the sheriff after me once when mine got over 6.

Well, being away from home I go to the Navy Base hospital here in Jacksonville and get registered for their lab and have my blood drawn and tested on May 29th. They send my doctor a fax of the results and his office calls me and gives me instructions. Well on the 30th the nurse calls and says, “Mr Richard, your blood is too thick. Doctor wants you to lower your daily dose to 2.5 mg and retest in a week. I had for some time been taking 4mg daily. I think, no problem as this has happened before and no big deal. I change my dose and go in on June 6th and have another test and the next day the nurse calls me and informs me that my blood is too thick and I need to go to a daily dose of 5.0mg. I think and I tell Debbie, hmmm I ain’t gonna go to 5.0. My reasoning is that if the week before 4.0 made my blood to thin what will 5.0 do? I go back to 4.0 to see what happens. On June 18th I go in to get another blood test and when I get to the office the male nurse tells me I don’t need to get blood drawn as he has a new machine that will give us an instantaneous reading. He gives my finger a prick and sticks it in the machine and my INR comes back 5.2. He says, hmmmm kinda high? Where is it normally suppose to be and I tell him 2.5. He says his machine is not real accurate over 5 so I do need to have blood drawn at the lab and have it tested. I do that and they fax the results to my doctor. I realize 5.2 is not good so I don’t take coumadin that evening as usual. The next day, Thursday the nurse calls and say my blood is to thick and I need to increase my coumadin. I say, “wait a minute, they told me yesterday it was over 5. At first she can’t find a date and then when I say it was done the 18th she says that is what I have and your INR is 1.4. Well again, having taken this stuff for ages I tell Debbie I am not doing anything and will not take my normal dose tonight (Thursday) either but will go to the hospital tomorrow and research what lab reports I can get my hands on. I go to the hospital the first thing Friday (today) and find out that the latest faxed report shows my INR is 5.0 and none of the past 3 reading are 1.4. I have no idea where the nurse got her information but it came close to having me dead. Had I blindly taken 5.0 mg coumadin for another week there is no telling where my clotting time would have been. I most likely would have started to bleed internally. I call back to my doctors office and talk to the nurse who blows me off and says that is what they had and I needed to have them refax the information and they would call me back. I go to the hospital and ask them to refax the results and they say even though they have received confirmation of their fax they will. I wait till later in the afternoon, after my treatment abut I do not get a call so before the local hospital closes (we are ahead time wise of home) so I call and talk to someone in the doctors office who knows nothing and tells me they have not received a fax. I am getting frustrated and tell her I need answers as there is a problem and the hospital will be closing soon. She takes my number and says the nurse will call me back. A few minutes later the nurse calls and says she has the report and the doctor wants me to stop coumadin for 2 days (I already have), take 4mg daily and retest in a week. I say, “wait a minute”. If 4.0 last week made my blood to thin then 4.0 this week will also. Her response is well that is what the doctor said. I tell her I want to talk to the doctor and if he is with a patient have him call me back. She gets the doctor on the phone and after a short pleasantry he tells me he thought I was on 5 and I tell him no I told your nurse twice I was taking 4mg and even that was too much. After I went thru the scenario of the last 3 weeks he agreed that 3mg was a proper dose and they would call in a script for that amount and told me to retest next Thursday. I am 800 miles from home and I have no idea who is really at fault but I have my suspicions. I will deal with this when we return home.

Doctors do not like patients who diagnose themselves but sometimes it is necessary. Had I blindly taken what the nurse told me I would probably be bleeding internally and maybe even dead. I told Debbie at least she would be financially taken care of after the lawsuit. We have to learn our bodies and how they react to what others want us to put into or do to them. The morale of this tale is that we have to be our own best advocates. No one will take as much care of us as ourselves and those who love us.

June 20th

Cancer treatment number 19 is done! A weekend without my beloved balloon.

June 23rd
Monday the 23rd I picked up our mail at general delivery as we were expecting script to come in. Well I have a plain yellow envelope with the name on the return address was familiar as it was one of my past role play coworkers. I figured it was a get well card. Well, it was a get well card signed by over 50 role players. It was not the card or the names that really blew me away. It was when I opened the card a money order fell out. I am not ashamed to say that I could not hold back the tears. With medical insurance paying for 100 percent of my treatment and that we have the RV and have been allowed to stay here at NAS Jacksonville as long as we need, money is not something that we have to worry about. I know from past experience there are those at role play that need or needed assistance much more than we do. The thought of those guys and ladies thinking of us at this time is really something that is hard to understand unless you have experienced a similar situation.

Then while I was having a cup of coffee after my treatment an older (yes older than me) gentleman was giving the female techs a difficult time about going back for treatment before he had drank his required 15 ounces of water 30 minutes prior. I could tell that both he and his elderly wife were scared as it was only his 3rd treatment. I tried to reassure them and then a young male tech came out and we finally convinced him that nothing bad was going to happen to him because he had just finished drinking his water. The water 30 minutes before radiation helps lift the bladder out of the way of the radiation field.

Remember, I have been on Lupron and Casodex (Hormone treatment) almost 2 months and it really does affect one's emotional side.

As I started back to sit with Debbie and chat with a few folks a while I could not help but become emotional thinking about their fear. I had to get up and leave as I did not want to break down in the lobby. Kind of messed up Debbie's conversations I guess.

Yesterday the 24th I finished my 21st treatment and am now on the downhill side of treatment.

The hot flashes are not really that bad but I do have to worry about getting emotional at time. My stomach/insides have really been giving me trouble as every time I eat i get cramps. We are beginning to wonder if it might be from tomatoes so we have throw what we have away. I guess if it does not clear up soon I might have to find a doctor locally or go to NAS Jacksonville hospital sick call. I also have a little tenderness in the lower abdominal area that I suspect is from my treatment. I do see Dr. Nichols tomorrow after treatment so I can discuss these issues with him.

Today, the 25th we passed on grilling as usual because of my stomach. Additionally storms also chased us inside not long after we started to enjoy another nice afternoon. Even with the afternoon temperatures in the 90's, if there is any light wind and we have shade so it is rather nice sitting outside watching the sun set.

To sit in the lobby before and after treatment one would never really realize that virtually all the people in the lobby are involved with fighting cancer. There is a true sense of fellowship but there is little projection of fear about this cancer that we battle. The atmosphere really falls into what many who have completed Proton treatment call a Proton holiday. The most often complaint is men complaining about frequent urination.

We have adopted a wild feral cat that comes around who obviously is female with kittens. She is in very poor condition so we bought a small food bowl and moist cat food and have so far got her close enough to get some pictures. She will not let us get anywhere close to her. Our site backs up to woods and that is where she come apparently is located.

At the current pace my last treatment will be July 24th.
June 26th
Today was see the Doctor day. He told us that my latest scan DID NOT show any evidence that the lymph node they had suspected was any longer evident. They are changing my Proton sessions to only radiate the prostate and not the lymph node.
I told him I wanted to be aggressive and not passive with this cancer. He said he understood where I was coming from but to radiate where there was no cancer evident would only cause more problems.

He also told me he thought my stomach cramps were from my intestines getting some radiation. He explained that where the lymph node was, had been pushing the intestines out of the way but now with the lymph node/tumor gone the intestine were most likely filling that space and getting some radiation that was irritating it. He feel this will dissipate when they stop radiating the lymph node area on Tuesday.

Hi Richard,

What a terrific summary!  Thanks for keeping us up to date. 

I'm glad you got some good news.  You deserve it!

Take care and God bless.  My thoughts and prayers are with you.

Kind regards,

Home stretch Richard!!! Congrats!!!

I'm sure you will feel a big relief when you are done.  There's lots of low cost internet providers available, so hook up with one...

Today will be treatment Number 40 and only 2 more to go.

I really found out what my fatigue level was Saturday. We took a trip to Savanna, GA and it was not what we had hoped for. Savanna is an old city and so beautiful but one must walk to really enjoy all it has to offer. Good pictures from the trolley are virtually impossible to get so walking is required. With the heat and humidity I could not do it. The experience was quiet humbling. I guess it can't be said the trip was a total lose as we did get to see some of the old city. Down along the river the streets are made of cobble/ballist stones and still have the old rail tracks running down the middle. The old cotton storage areas are now little shows. We did take the river cruise but it was not what I had expected.

I already have my appointment to get my next Lupron shot on August 1st and a year of Casodex prescribed so after Thursday it will be late October for my first post treatment PSA. Dr. Nichols told us that it will be probably 3 years before a PSA means much. The hormone therapy will suppress the PSA and it will be close to a year after I stop that a PSA will be indicative of my status. He told us to enjoy and not worry about something that we could not do anything more about.

Richard

I am a graduate of Proton!

My completion date PSA is .21, Free PSA 0.08, Percent Free PSA 38.1 with testosterone level of 14.6

Now we can try and get on with life and look at PCa in the rear view mirror except for the recommended 2 years of hormone therapy. 

I can live with ED, hot flashes and the emotional roller coaster of Lupron and Casodex. I can say that because I have a wonderful wife and best friend who assures me she can also live with me with those traits. She laughs and says "Yeah, we share those traits my love".

Richard

Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 

 

Dutch,

Amen.  Outside of having my 40 and 38 year old sons experience my prostate issues with removal 2/5/2007, instructing them about the importance of yearly PSA checks, making them aware that my father had prostate cancer (out lived it at age 91), one brother (their uncle) having prostate cancer that has matastisized and being treated via chemo, another brother (their uncle) died of multiple myloma, my mother died from breast cancer and my maternal grandfather passed away from pancreatic cancer, what else is there that I can do to motivate them to begin yearly exams?  Any suggestions for 40 year olds?  Prayer is always there for enlightment.

 

I believe a point has been made and hopefully they take it to heart and get motivated.  The message is written!

 

Marc

7/26/2008