Thursday, November 28, 2013
Well, before I get into the meat of this blog, I want to extend my heartfelt thanks for all of your wonderful comments and prayers. I would like to send a personal message to each and every response to this serious matter. Unfortunately, my condition has degraded and I find that I just donít have the energy to do this.
I want all of you to know that I cannot find the right words to really show my appreciation.
The primary reason for this issue is to tell each of you that my Lymphoma has now been classified as TERMINAL. As to my time line, it is not cast in stone, but has been described in two expected possibilities.
WORST CASE is 3 to 6 months.
BEST CASE is 1 to 2 years.
I am now on a different chemo cocktail. I started on R-CHOP which is touted as the Cadillac formula but I was not responding to this protocol. As a result, the oncologist changed to GEM/OX plus RETUXIN. I have had one treatment and was scheduled for number 2 today, but it has been put off for a week because the platelet count is too low. Hopefully this count will recover enough to proceed next week.
I asked my doc this morning what will trigger the WORST CASE and he said nothing specific is involved. I will begin to simply start going downhill. Loosing lots of weight, low appetite He said you will know.
About 10% of patients will experience a longer time, but he does not know of any confirmed cures. A very small numbers may live up to 5 years. THAT IS MY NEW LONG TERM GOAL.
Marj and I are hoping to make three trips next year. The first to Houston to visit her family, who I love dearly. Then on to Portland to visit my family and Seattle to visit our sons and families and dear friends.
We hope to have time to make a trip to Grand Junction, CO, my birthplace, to visit friends and the Colorado National Monument, which is one of my favorite places on earth.
Remember what I wrote in my first blog about this matter. NO PITY PARTIES.
I have had a wonderful life. Married to a wonderful woman who is my friend and partner for 56 years, 5 sons, 3 daughters in law (who we lovingly call our daughters). And 11 grandchildren. We donít have great grandkids and I really wanted to hold another baby, but this is not likely. We have one granddaughter that is married, and another getting married on January 3rd.
When the time is right, we will move in with our son in Chandler, AZ. This means selling our home and settling in with family.
I will stay as active as possible in SP for as long as I can. My immediate goal is to make that magical LEVEL 20. I will make it, I promise.
So keep up the great attitudes that is exemplified in our SP friends and send them my way if you can find the time.
I wish all of you, HAPPY THANKSGIVING, MERRY CHRISTMAS AND HAPPY NEW YEAR. You will not hear any Happy Holidays from me.
God bless us all, each and every one. (I think Tiny Tim said that on Scrooge).
Monday, November 25, 2013
In the chemo room, there is this mini refrigerator. Being of the curious type and with a very, very weird sense of humor (at least I think its humor), I asked the entire staff just one little question.
How do you get the nurse in there?
So far, no answers.
I go in for chemo again this week, maybe someone will shed some light on this vexing problem, but somehow, I doubt it.
Cheers and Happy Thanksgiving.
Frank -- I don't know why it opens 90 degrees to port.
Friday, September 27, 2013
The journey continues. I had my fourth R-CHOP cocktail infusion yesterday and as expected today I am wiped out. This will come back to normal in a couple days. I continue to see how each day has its own personality and none are the same two days in a row. Weird.
So far, I have had no real physical difficulties with the treatments. My son takes me his job sitting beside me and treating me like royalty. I would be lying if I said I didnít like the care he gives me and his mom.
I will admit to be down in the dumps last night. Dave and I met with the oncologist prior to the R-CHOP cocktail infusion. I had had a PET scan last Monday and he was not really overjoyed with some of the results. The cancer cell count has been significantly reduced (A good thing) but he was really disappointed that the size of the affected lymph nodes has not reduced at all. (A bad thing) There are only two nodes in play and that is really a good thing. Had any nodes above the waist line been involved, it would have been classed as stage IV I believe I mentioned in my first blog that the description of the lymphoma I have is LARGE B CELL. This is an extremely aggressive subset of the hundreds of lymphomas. Before my first meeting to get the results of the biopsy I asked him, What if I elected not to receive chemotherapyĒ His answer, you would have 6 months to live. That certainly made the decision easy to say YES.
I was so befuddled on the way to get the results, I ran into a car in the left turn lane. Was not a happy moment.
Nether Dave or I could tell if he was being protective for me or if this could be something a lot more serious. He did talk about the possibility of additional treatments but was not specific as to the nature of the treatments. He is normally an open book and that is why I was a sad case last night. But, with the dawn, a new light shines and I am more determined than ever to meet this beast and decimate him.
This about sums it all up for now. BTW, there is a new IPhone app titled FOCUSONLYMPHOMA published by the Lymphoma Research Foundation that is extremely informative and detailed. Should anyone like to learn more about the many blood cancers contained within the Lymphoma category and ITíS FREE!! Just search for the title in the Apple app store and download it.
I am sure he will have another PET scan and I will know a lot more in 6 weeks and will post another update.
Thanks for listening and huge thanks for all the positive responsed I have received.
SP is wonnerful, wonnerful. (Remember who always said that on his TV show?) Let me know who you think it is.
Chao for now.
Monday, July 29, 2013
I have been pondering how to write this as I sure as heck do not want to start a pity party. I have concluded that the best approach is direct and to the point. So here goes.
First and foremost, I did post this data to my teams and the support from all of you is mind boggling. It was this incredible level of support that told me that this might be of good use for someone out there.
I have been noticing that my muscle mass and overall weakness have been seriously compromised and no one could tell me why. Starting earlier this year, it became almost impossible to get out of a chair or INTO the car. At this point I engaged 3 specialists to work together to get to an answer. The first was, of course, my primary care doc and then on to a Gastro as I was fearing that I had an internal bleeding problem similar to the one I experienced in Jan í12. His advice was to seek out a hematologist ASAP, so enter specialist Number two. Of course I also met with my cardio as I was suffering edema at a high rate. I gained over 20 pounds over two weeks. Physically, this is not diet related since it was say that I consumed over 70,000 kcal in two weeks.
By now, all the blood tests were in and found some blood cells that indicated a possible Lymphoma connection. Next step was a CT scan of the abdomen and chest. Result, greatly enlarged lymph nodes in the abdomen but nothing in the chest area (thatís good news).
Enter a biopsy of the largest lymph node and the end result was POSITIVE FOR STAGE 2 LARGE CELL LYMPHOMA. This is an extremely aggressive blood cancer but it is also highly successfully treatable. I mentioned earlier that finding this only in the abdomen was good news and here is why. Had the disease been found in the chest area, it would automatically listed as STAGE 4. Not good.
Enter the therapy phase which I officially started on Thursday the 25th. It is a chemo therapy called R-CHOP for any who would like to investigate. It is a long process that took almost 7 hours to complete.
I will have 8 treatments, given 3 weeks apart and every one is certain that I will be OK. Right now, I have placed my success squarely in Godís hands. That is a good place to be as far as I am concerned and I am comforted by this.
One area that I warned about is that the cortisone that is part of the R-CHOP cocktail would raise my blood sugars and that was an understatement. Now I will check to see if I should take a diabetic med in the short term to control my diabetes which is, for now, in full remission. If it isn't one thing, its another.
As to SparkPeople, I will probably cut back a little on my participation but I will not quit. As famous navy admiral once said. DAMN THE TORPEDOES, FULL SPEED AHEAD and that is the way I will attack this dastardly event in my life.
Sorry this blog is so long, but I trust and value your thoughts. What a wonderful organization we belong to.
Friday, May 24, 2013
Feeling a little nostalgic today and this email from an "old" friend of mine really hit home. So please read it all even though it is a little long. Remember, if you are not in your winter, you will be sooner than you think.
I FIRST STARTED READING THIS EMAIL & WAS READING FAST, UNTIL I REACHED THE THIRD SENTENCE. I STOPPED AND STARTED OVER - READING SLOWER AND THINKING ABOUT EVERY WORD. THIS EMAIL IS VERY THOUGHT PROVOKING. MAKES YOU STOP AND THINK.
THIS IS A LONG ONE, BUT WORTH READING.....
You know. . . Time has a way of moving quickly and catching you unaware of the passing years. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams.
But, here it is... The winter of my life and it catches me by surprise...How did I get here so fast? Where did the years go and where did my youth go?
I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like.
But, here it is...my friends are retired and getting grey...they move slower and I see an older person now. Some are in better and some worse shape than me...but, I see the great change...Not like the ones that I remember who were young and vibrant...but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be.
Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore... it's mandatory! Cause if I don't of my own free will... I just fall asleep where I sit!
And so...now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!!
But, at least I know, that though the winter has come, and I'm not sure how long it will last...this I know, that when it's over on this earth...itís over. A new adventure will begin!
Yes, I have regrets. There are things I wish I hadn't done...things I should have done, but indeed, there are many things I'm happy to have done. It's all in a lifetime.
So, if you're not in your winter yet...let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life please do it quickly! Don't put things off too long!! Life goes by quickly.
So, do what you can today, as you can never be sure whether this is your winter or not! You have no promise that you will see all the seasons of your life...so, live for today and say all the things that you want your loved ones to remember...and hope that they appreciate and love you for all the things that you have done for them in all the years past!!
"Life" is a gift to you. The way you live your life is your gift to those who come after. Make it a fantastic one.
LIVE IT WELL! ENJOY TODAY!
DO SOMETHING FUN! BE HAPPY! HAVE A GREAT DAY
LIVE HAPPY IN 2013! LASTLY, CONSIDER THE FOLLOWING:
TODAY IS THE OLDEST YOU'VE EVER BEEN,YET THE YOUNGEST YOU'LL EVER BE
SO - ENJOY THIS DAY WHILE IT LASTS.
Your kids are becoming you......but your grandchildren are perfect!
Going out is good.. Coming home is better!
You forget names.... But it's OK because other people forgot they even knew you!!!
You realize you're never going to be really good at anything.... Especially golf.
The things you used to care to do, you no longer care to do, but you really do care that you don't care to do them anymore.
You sleep better on a lounge chair with the TV blaring than in bed. It's called "pre-sleep".
You miss the days when everything worked with just an "ON" and "OFF" switch
You tend to use more 4 letter words ... "what?"..."when?"... ???
Now that you can afford expensive jewelry, it's not safe to wear it anywhere.
You have 3 sizes of clothes in your closet.... 2 of which you will never wear.
But Old is good in some things: Old Songs, Old movies, and best of all, OLD FRIENDS!!
Stay well, "OLD FRIEND!" Send this on to other "Old Friends!" and let them laugh in agreement!
It's Not What You Gather, But What You Scatter That Tells What Kind Of Life You Have Lived.!!!
Cheers to all, Frank
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