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DraginRat · 02-11-2015, 04:06 PM

Joe and Annette;

Thank you so much for your kind words and thoughts. I have answered you PM.

Ken Gasbarri

doc · 02-11-2015, 06:15 PM

I must tell you that I admire your straightforwardness in dealing with this. Courage to you my friend and may you make the right decision and may you have the wisdom to recognize that decision when you see it. God bless and comfort you. doc

papaw.1 · 02-11-2015, 07:16 PM

Hi Ken,
I had Prostate Cancer in 2009 and I had the radiation seed in plants and it has been in remission since then.I go in every 6 months to have my PSA checked.I have no where near the courage that you have.Good Luck and Best wishes and Peace be with you and your family.

DraginRat · 02-20-2015, 06:00 PM

First of all, I would like to thank everyone for your kind thoughts and wishes.

I do, however, feel that you may have misjudged me.

I am certainly not brave, strong, or stoic.

I feel more like a confused little boy. I don't really have a handle on what is happening. my Doctors are very good at explaining things, and why or why not things happen. I ask a lot of questions. Mostly asking them to explain what they just said, and they do their best to explain things.

Still, at the end of the day, I have no idea of what I am doing, or what I will do if option "A" happens, or what happens with option "B". I am whistling in the dark as I pass the cemetery, hoping like Hell that the bogey man doesn't jump out and get me, but no real plan if he does.

Anyway, I have survived my first round of chemo. Didn't get the full treatment because I am having some minor surgery on my ear, back and chest for skin cancer. Then, the bladder Doc wants to go in and carve some minor tumors out of my bladder. All of this would be adversely effected by the Avastan chemo. I guess it inhibits wound healing. I felt a bit poorly that first day, but after that, felt pretty good. Damnest thing though. They put in new treatment chairs since I was there last, and these new chairs are not nearly as comfortable as the old ones. But, the nurses in the chemo clinic are still the best, and certainly make it go as best as possible.

Then, on top of that, I finally got to talk to my Doctor over at the Army Hospital. He is up to speed with all the latest scans and tests. He is still very optimistic about what he is doing. He is an "Interventional Radiologist and really believes in what he is doing. He tells me that my case is the topic of conversation of many meetings he has with Doctors from around the country. He wants to "push the envelope" with me, but wants to talk with some of those other Doctors and see if they agree.

Also, my Doctor at the VA really does NOT believe in this type of treatment, and would rather I did not continue. He seems to be a very intelligent man, and experienced Doctor, but very conservative and conventional. I certainly respect what he has to say. BUT, he believes that using standard and accepted practices, he can extend my life for some time longer than if I am not treated. The Army Doctor on the other hand, believes he can stop the cancer dead in it's tracks, using the Y-90 procedure and then maybe some conventional treatments to clean up what ever is left. So, if I have to choose between the two, I will go with the Army guy.

The problem with all that is the VA guy has to sign off on the referral to the Army guy. If for what ever reason, he does not, The Army guy tells me he has connections, and can continue to treat even if the VA refuses to pay. We shall see how all that plays out.

So, on one hand, I am very optimistic about the near future, I do see a long rocky road before we get to the next horizon. Everyone in both the VA and the Army hospitals have been so nice, helpful, and understanding. They treat me like I am someone special, and I ain't about to tell them no different.

Peg and I have had a long hard discussion about all this. We pretty much have our heads in the same place on things. The girls are spending a lot of time online, studying everything they can find. My Grand Daughter tells me she is going to be a Doctor, and my first visit will be free. (she takes after her Mom). She is 11, and if somehow I should be around when she hangs her shingle, I will take her up on that.

So, after all this long winded monologue, I still have no idea what is happening, or when. Guess I will just take it one day at a time, and maybe get a few things checked off Peg's "to do list".

Ken Gasbarri

Mike and Cha · 02-20-2015, 09:07 PM

Ken I really believe you are much stronger than you believe you are, or give yourself credit for. Just reading this brings tears to my eyes. There is no doubt in my mind that you will be there when your Grand Daughter hangs her shingle, and if not in body, definitely in spirit. And it will be because of the spirit in you now, that she will achieve her goal and who knows maybe come up with the cure for cancer.

I can't imagine what you are going thru and totally understand your feeling of being a confused little boy. You have the right to feel this way as you really don't know what is going to happen or what direction would be the best for you to take. If you are religious please know that God is by your side and there are no decisions that are right or wrong as he is guiding you throughout this journey.

Our prayers are with you and your family, and that you get through this and enjoy life with the strength and passion you have displayed. Your story and courage is testament to others to never give up and live life to the fullest. I have no doubt you will be there the day your Grand Daughter hangs her shingle, hang in there and God Bless.....Mike

Triatik · 04-25-2015, 05:22 AM

Ken, I just found your posting and after reading it, wish I could offer some suggestion. I too feel for you and all you are going through.

One suggestion that came to mind after reading your story is for you to write a book. Put all your thoughts and feelings about life, your life into a book. There are many apps available to help you do this. Maybe only your family will read it but they are the most important ones in your life and it gives them something after your gone.

Start writing today!

Pray for you !

Dave

MSHappyCampers · 04-25-2015, 09:39 AM

Hi Ken! Thanks so much for the update! Please continue to update us on a regular basis.

The Army doctor's suggestions sound promising. You might want to ask him about previous patients with conditions similar to yours that he has used this treatment on, and what the results were.

Continuing to pray for you! Hang in there buddy! God bless!

DraginRat · 04-25-2015, 04:53 PM

Well, it's been about 3 months since I started getting bad news about my tests and scans. Seems all the important numbers were climbing at an alarming rate. Had my Oncologist at the VA very worried. My Doctor at the SAMMC was a bit more optimistic, but still concerned

Lately, I have been feeling great. Perhaps better than I have felt in a long, long time. One thing to consider is that this time, after my Y-90 treatments, I actually took the Percocet pills they gave me. Now, when I took them, I felt really, really, really good. Nothing at all hurt, and for a brief moment, I considered trying out for the NFL, but Peg talked me out of that sorry idea. Anyway, I stopped taking those real quick because I can get use to that feeling real easy, and I certainly don't want to become a crack head at this stage of life.

Anyway, I've had two partial chemo doses, two Y-90 procedures, three skin cancer treatments, a bladder treatment, and two senior French toast servings with bacon, and things seem to be going great. All the numbers that were going up, are now falling just as quickly. The VA Doctor can't believe how well things are going, the Doc at the Army Hospital is pushing the throttle to warp 11, and everything I touch turns to gold.

Like I said, I feel great. I've been putzing on things around the MH and race car, and everything I do or touch works. I do have bad days, but even then, I am in a good mood, and ready to try anything. Oh, and I promised Peg if she took me to Walmart with her again, I would behave myself, and I've been there twice, and ain't said anything nasty or started anything, so I am working on becoming a gentleman.

Also, I have put down two coups. The girls are trying to take over being the go to guy in the family, but the last two times anything went bad, they had to give up and let me get it done for them, so I am still the Dad in this family.

So, all in all, things are looking up. The VA Doc seems to think I will be around when the next generation of cancer treatments become available, and that I should be a good candidate. My Army Doc believes if he can destroy the liver tumors, all the tumors in other locations will follow suit. I am feeling very optimistic about all this, and am enjoying every moment of every day.

I realize all this can come crashing down around me in a heartbeat, but until that happens, I am GOOD.

Ken Gasbarri

TLGPE · 04-26-2015, 11:04 AM

Hi Ken,

It's true that one of the nastiest things that life hands us is the ability to realize that mortality happens to all of us, even to those who are bullet-proof. Sad day, but not unexpected.

I had a TIA about five years ago, but it was not really the first, just the first that was diagnosed. That got my attention, and I started getting out of the job life and into retired life. Sure, I work harder now with the motor home than I did on most of the work stuff, but it's different.

I keep thinking that I'm fine, and I mostly am, but SOMETHING is lurking out there and it WILL kill me. I'm not paranoid, it really is trying to kill me. I keep ducking..............

I'm really glad to hear that you're gaining on the demons. As you mentioned, quality of life is important; keep after it on your own terms.

Congratulations to you and your aggressive doctors, and very best wishes to you as you continue living YOUR life.

Tom

MSHappyCampers · 04-26-2015, 12:04 PM

Great news Ken! Hang in there!

NorthernDriv · 04-27-2015, 10:52 AM

Just keep going....Go!
I'm going like there is no tomorrow.......year 3 above ground and still going!
At least we know there is an end approaching and can plan accordingly.

DraginRat · 07-29-2015, 07:06 PM

So, here we are, almost six months since things started going downhill. Had good news, bad news, a lack of bad news, which is basically good news, and confusing news. Things seemed to be going very well until yesterday.

We had an appointment with the IR (Interventional Radiology) department. This is a new department at the VA Hospital, and of all things, the chief of the IR dept. at the Army Hospital is now the chief of IR at the VA.

So anyway, we were suppose to be seeing the Doc to get an extension for the referral to the Army Hospital, and did get that accomplished, but had a conference with 4 and sometimes 5 doctors.

We had just received a message from the new chief of IR at the Army Hospital seemingly saying great things. It was pretty much in Doctor talk, so really don't understand what he was trying to tell me. Hope to find out on the 6th when I go back to the Army guys.

Anyway, I was aware that since I started back on chemo back in Feb., my "bilirubin" was climbing again, and now my platelet are falling drastically.

So, my chat with the Doctors this time, I learned that the chemo and/or the radiation is destroying my liver to the point that any more radiation will indeed kill me, and continuing with the present chemo regiment will at the very least nix any chance of my liver recovering, and may even get me to the point of having to do transfusions on a regular schedule.

So, bottom line, if nothing changes, and not doing radiation or chemo, I have 3 maybe 4 months left. If I do chemo, I would have to do a different set of chemo, and although it will not destroy my liver, the other side effects are terrible, and would only extend my life by a month or two.

Now, there is still a window of hope. If I go awhile without radiation or chemo, my liver may recover to the point that we can find a treatment that won't kill me.

But, Peg and I have decided that enough is enough. We have one more appointment to see how the liver is doing without treatment. The very next morning, come Heaven or Hell, we are on the road to see our kids and do a little living.

If someone comes up with a treatment that we feels is worth the effort, we will certainly consider it. Otherwise, it's party time.

We had a cruise planned for next April, but the Docs say that would be very optimistic at best, so we cancelled that, and using our refund to fund some road trips we now are thinking about.

We have told our Daughter that lives in town. She seemed to take the news well, but did call in sick this morning. We will talk to the other kids when we visit. Not something we want to discuss on the phone.

On the upside, I no longer am on a diet. I won't need to fit into my good clothes for the cruise.

So, all things said, I guess things for now are as good as it gets. I suppose there will be "issues" later on, but for now, point the rig down road and pull the trigger.

Ken Gasbarri

LarrytheBear · 07-29-2015, 07:27 PM

I'm glad you choose to live. Good attitude. My prayers are for you and your family.

lsw9658 · 07-29-2015, 07:29 PM

Ken,
I've been following your journey on here and I had hoped things would turn around for you. Please know I will keep you and Peg in my prayers. I hope the two of you can have a few more adventures, that you eat all your favorite foods as much as you want and that life deals you some wonderful surprises along the way. Sending blessings to you both.