Tuesday, March 25, 2014
This is a question that has been asked of me from everybody in my sphere of influence. I have been on chemo since July and it doesn’t get any easier. This new cocktail, which is really an old one that has been put into service due to failure of the modern formularies, has had very limited success as indicated in my last blog.
A byproduct of this formula, called ASHRAM, is that after the 5 straight days of taking the chemo, one is really sick for up to 2 weeks, then a week off and then get back on the merry go round. I have been told by my team of doctors that there will come the day when everyone says, “I have had enough of chemo. Let’s just stop it and let things naturally progress,”
I must admit that there have been a more than a few moments when this has entered my mind. Then I think of Marj, my wife of 56 years, our five sons and 11 grandkids and one great grandbaby on the way and I change my mind. I think of the good times, and the bad, and I don’t say it out loud for fear someone will hear me. Yesterday we went to a baseball game at the local HS where my grandson plays and it was all I could do to steer the walker from the car to the bleachers.
I have come to the stark realization that there is LIFE and there is QUALITY OF LIFE. I do get some level of exercise in that I still shop for our food and stuff, and I count this every time. However, my quality of life is definitely diminishing and that defines my quandary. There is no answer to the question that becomes obvious, but it just keeps nagging at me asking for MY answer. It is up to me and God to answer the challenge.
As to my continuing involvement in SP, it will not stop but I do intend to pull back. I have been blessed with all of my friends in SP and the incredible support and prayers that you have poured forth my direction. They do help and I cherish the sentiments and continual listening to my ramblings.
Friday, March 14, 2014
Yep, that's right.
I went over 100,000 points today. I am NOW ON LEVEL 20.
Been a long time coming so celebrate with me.
Sunday, March 09, 2014
I will admit that I am having trouble finding the right words to compose this report. First an apology to each and every one of you wonderful folks in SP who have offered prayers and good thoughts to me.
I normally always respond to all mail and blog comments to each and every one personally. I find that I just don’t have the energy to do this so I apologize. Please know that I read and savor each and every contact with me as I travel this really dastardly path.
For those who are not familiar with my situation, a short recap is in order. I was diagnosed with Large B-Cell Lymphoma in July of last year and began chemo immediately as this is a particularly aggressive form of Lymphoma. The first chemo used is R-CHOP. Worked well for 3 treatments and then was no longer effective. My body, for some unknown reason, rejected this treatment.
Started again with GEM/OX with RETUXIN. Same thing. I rejected the cocktail. Now on EASHAM and this is the last cocktail available for my condition. If I reject this one, there are no other regimens available. Clinical trials might be available but the doc is not sure if I am a candidate. A bone marrow transplant would be a good thing, but at 78 years old and having a bad ticker, I am not a candidate.
I start another round of chemo next Monday. I will receive the chemo every day for a week and then 3 weeks off. Of course, after the chemo week, there is a 1 to 2 week period of feeling really crummy. Not really sick, but darn close to it.
I am scheduled for a PET scan on March 12th. Then we will know if there is a positive result i.e. a reduction of the size of the primary lymph nodes. I they haven’t grown (or better yet shrunk even a smidgeon) there is some cause for hope. I must tell you that I have been warned that if there is no improvement or worse, they will want to stop all CHEMO. Bone marrow transplant would help, but my age (78) says no to this. It is quite invasive and survival of the procedure is not probable.
My goal at this juncture is to continue in SP with gusto. I WILL make it to level 20. I only need 800 points or so to get there. So, as usual, it’s DAMN THE TORPEDOES, FULL SPEED AHEAD.
We are planning on moving in with our son and family. Marj and I find that we can no longer take care of our home and I am very close to being unable to drive. We had high hopes of making three trips this summer. First to Portland to see my family, on to Seattle to visit our kids and friends. Second to Houston to visit Marj’s family and finally to my home town of Grand Junction, Colorado. This is looking less likely to happen due to the degradation of my health but we will try to pull it off. PLUS WE JUST FOUND OUT THAT OUR FIRST GREAT GRAND BABY IS ON THE WAY. So guess what, a NEW GOAL. Hang on till arrival!!!
I have had a great life. Married to my wonderful wife for 56 years on the way to together forever. Five wonderful sons and 11 grandchildren. I am comfortable in my faith and ready, but not really willing, to close the chapter in my book of life.
Looking at this blog looks like I am rambling, but the truth is, I have so much I want to say, that I have trouble getting it organized in my head. I have turned into an emotional idiot. Thank all of you for being so supportive and patient with me.
God bless each and every one of you out there in SP land.
Monday, January 20, 2014
My granddaughter had her marvelous wedding on January 3rd and it was a hoot, to say the least. Being grandparents, we did not anticipate being in the wedding in any formal nature.
Hailey and Matt had some surprised in store for us.
She asked for us to be at the rehearsal so we went only to find out that Marj and I were to lead the wedding party onto the large patio where the wedding was to take place. SURPRISE NUMBER ONE.
A beautiful ceremony followed by a great dinner. But SURPRISE NUMBER 2 was to take place before the dinner. Hailey came to me and asked if I would say grace for the guests. Ever know a grandpa say no to a granddaughter? Well, I was not going to break that tradition and I proudly accepted and did so in grand style.
Marj and I both use canes so when she commanded that we try one dance together, we agreed. So here comes to old codgers, onto the floor and away we went, our canes clanking together (my cane was leading, of course). I noticed that as the dance progressed at least for 2 hours – at least it seemed 3 hours, the dancers were leaving the floor until we were the only ones still afloat, uh, rather, moving.
This is SURPRISE NUMBER THREE.
The MC approached me and he introduced us to the crowd. He then asked to turn to face the head table and there was Hailey and Matt and then he asked me how long we have been married. I stuck out my chest and proudly stated, FIFTY SIX YEARS and the crowd oohed and awed in approval.
I was then asked … “Do you have any advice to give the newly married couple on how you have managed to be married so long?” I said I certainly did.
My advice is this. “Your grandmother and I were married in a time when it was the norm to fix things, not take the easy way out and just throw it out and start over. When something breaks, and believe me, it will break once in a while, everything does. Don’t throw it away and start over. FIX IT. That is my challenge to the two of you.”
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 don’t 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 don’t 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).
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