Tuesday, September 29, 2009

Wait! Did I give you the opinion, yesterday, that I felt that I would not feel "good" again until eight weeks from now? Well, something "phenomenal" must have happened then that's made me feel, almost, good? Go figger on that? Did make a committment to get down nourishment, and did a pretty decent job. And I did go to the chemo doc and pick up a "quart" of fluid. But, I've done all that before and I didn't feel like I do now, which is a highly qualified "better." I did go to the movie with my grandchildren Amy, Claire and Clay ("Cloudy with a Chance of Meatballs"), could that be it? Whatever! I'm taking this day for what it is and hoping tomorrow is just as good. Today I will knock down my 20 rad (with eight to go) and my 5 chemo (with one to go) so it's a major day. Or, could it be the thousands of prayers that the Lord is hearing on my behalf and all the love that's being shown me? I'll take that one! Stay tuned for tomorrow.

Sunday, September 27, 2009

OK, let's talk. This cancer sucks. Now, with only 12 days to go (10 rads, 2 chemos) there are no "good" days. You just measure each one against the last one. If it's better, it's better, if it's worse it's worse. I just try to sleep as much as possible. Two reasons: to use less energy and make the time go faster. Maybe I'm getting 500 calories a day down, at best. Nothing tastes good. Everything smells different, even people. And, it's not them it's that something has broken my smeller, if that's a good word? I played ball with my 4 year old grandson today. I'm sitting in a chair, I throw the ball, he catchs it and brings it to me. I'm not going to be remembered that way. One these days I may go down hard but it's not going to be from this s--t! I will be running and playing with all my grandkids again.
Let me tell you how much the cards, emails, comment's on the Blog, prayers mean to me. No way I could mention one name because then I would have to list everyone, and I don't have that much Blog space.
I will say that I love you all and we will get together again. And, to my running friends. Let me tell you, when I get my feet under me again I'm going to be "Fleet Man." You remember how quick I was at 155, imagine how quick I'll be at 140! Stand Clear! Oh yeah, did I say I loved you all? If not, I do.

Saturday, September 26, 2009

Friday has come and gone and I'm 10 rads away from being finished! I just have to point that out every day. Friday was also a scary day. Was able to take liquid early AM, but as the day wore on, NOT! The procedure doc said what he did, in fact, open me up, but the area was constricted and he could not get his scope completely thru. He advised that even tho the tumor had been pushed open it could "rebound" and the opening tighten up. Well, it dang sure did. It shut down and nothing went thru, not even water! I kept trying to drink but to no avail. Kinda starting getting scared. Then, about 7 PM, I remembered a guy telling me that if this happened to get some Calcium and Magnesium, mix it two to one, disolve it in water, (a big spoon, and drink it down. Lynda went to the health food store and sure enough they sell it in that formula. Calmag. I open a capsule, dump it in a spoon full of water, stick it in my mouth and, voila, I can drink again! Needless to say, I have mixed emotions that I have learned this "from the street" and not from my doctor. I suppose it's my responsibility to let them know this "new" find. More on that later. But, as "they" say, "All's well that ends well" and that's what I'm working towards! Now I can look forward to the weekend.

Thursday, September 24, 2009

Two days pass so fast! Yesterday was Rad, plus see the doc. Doc tells me I'm a "quart low" again. So off to the chemo place to get a round of "whatever." Comes in a bag, it's clear, goes in my port and I feel better when I leave than when I get there, so I guess it's some kind of super water. The rest of the day goes reasonablly well, but I can't eat anything. I keep thinking, "Tomorrow I get the dialation and I'll be able to eat." The thought wears me out and I'm in bed by 8:30. Up for rad this AM and see the doc. (rad doc) Determines I'm again a "quart low" because my blood pressure is so low. Decides for me to get another infusion in order to make sure I can still do the procedure at 2:30. Get the juice then go to dialation.
(Does it seem as if I'm at the doc's all the time and/or going back and forth? Hey, you've figured it out!)
After the procedure, which did open me up just a bit, I drink soup. Honestly afraid to try out my "new opening." Worry that it will not work and I don't have a plan B. (But I guess I'm not the one who works that out!)
Lynda's home! Find out that my eating passageway has been opened up about the width of my little finger. Yea! Now I can eat soup with stuff in it!
Tonight I was at Bluebonnet Cancer Camp orientation. Camp will be Oct. 2, 3 and 4. My buddy in Tom H. This is going to be fun, both for Lynda and I. She will have a free weekend. Hard to believe that I only have 11 more rads and 2 chemos, but I believe it!

Wednesday, September 23, 2009

A good day! Rad @ 7:30. Chemo doc appointment @ 8:45, to chemo and "add a quart" immediately after. Finally out of the docs at 2:40, but I felt much better. Am set for a dilation of that blocked area on Thursday. Perhaps I can eat and drink better, at least that's the plan. Did have an increased energy level that evening which, as you can see, has lasted into the night and wee hours of the AM. Lynda and I are working diligently towards raising $100,000 for two Adult Cancer Camps in 2010. That little project helps me focus on someting (worthwhile) rather that this "elephant in the room." Love you all, now I think I'll try the bed one more time.

Monday, September 21, 2009

Today started with radiation at 7:30. Asked the technician if rad could be causing my back to break out. "As a matter of fact, it could." she replied. "I'll get you some Radicream." It does help. I was dragging, and had not eaten or drank very much, so I was sent for extra fluid, again. Quart low, I call it. Met a guy from Childress who has lung cancer. Turns out he works for Five Star Ford in North Richland Hills. His owner, Sam Pack, was mentored by Lee Jarman the Studebaker dealer in Levelland in 1953.
Later today I was treated to visits from two "vintage" friends from my home town of Levelland. Sharon Kirk Wilson and Tommy Sibley. Tommy was on his way to Santa Fe from Beaumont and had to look me in the eye and hug me and Sharon came over to join. This was a good day, especially since I'm halfway thru with both radiation (14/28) and chemo (3/6). Nausea comes and goes. Funny, roller coaster days are good days because at least some of the time you feel about half decent. One more funny thing, I'm looking forward to chemo tomorrow because, if history repeats itself, I'll feel a whole lot better tomorrow afternoon. Of course I'll pay for it on Wednesday, but being the eternal optimist, maybe not.
Sunday, lots of rest. In fact, all day rest! Some nausea, but rest, rest, rest.Does that help? I guess I'll find out today. What kinda scares me is that I can't eat and or drink much, and I know it's very, very important. Keep experimenting, looking for something that tastes even half way good. Soup works the best, but I am getting tired of it all the time, but, it's better than nothing. What's toughest is trying to eat around Lynda. When I can't then she "hurts." And then I hurt. I see my chemo doc on Thursday and I've got to remember to ask how long after the treatment does it take for that to wear off. Thatttts, all folks, for today.

Sunday, September 20, 2009

Saturday was not a "bad' day, thank you Lord! Up in the AM, off to work till noon, deflate, "go to chair" in the car coming home (while wonderful Lynda drives) then home for more rest. Start "coming back" about 5, off to a Chamber gala at 6:30, and finish the night, 10 PM, at Charles's grandaughter's birthday party. Ambitious day but I felt better when it ended than when it started.
It's been pointed out that I did not explain what cancer I have. It's esophageal. Just at the bottom of my esophagus and the top of my stomach. The first protcoll was to radiate it, chemo it and then cut out what's left. Now, under this study, we are doing A and B and skipping C, which is a double major surgery. Of course it's not totally out of the picture, we'll just have to see after all the other is done. October 9 will not come too soon.

Saturday, September 19, 2009

Friday was a "non" day. Actually, I seem to be hitting a "rythm" and I guess I can't complain. I don't feel so bad that I can't do something but I don't feel good enough to do much. Food and drink just don't smell or taste great, but I have to "have" them, or else!
"Waiting for Gordo", I think was a play that has been around for years and, in memory, it bests illustrates my life right now. In the play these two guys just sit around and talk about when and whether Gordo is ever going to come. My life and the play just keep going on, waiting for a time I'll feel better and wondering if and when. I keep reminding myself, it's just like preparing for a marathon. You set your plan, not too ambitious as to hurt yourself but so that you will continue to stress your body into getting stronger so that you can make the distance in a time you will be happy with. Making it to Radiation every day is like making it to a workout. Then you come away with the plan to make it to the next one, 24 hours away.
Enough of that! 13 radiations down and 15 to go. (Come on Monday!) I'll be on the downhill side. And, with my Tuesday chemo I'll be two thirds of the way done with them.
Now, I'm just not just sitting around all the time. I still have work. I still have my two youngest grandkids and their Mom and Dad just down the street, I still have all my friends that encourge me, I still have my other two daughters and a son in law that call everyday, a brother and a sister and thier mates contantly checking on me, the love and careing of three granddaughters scattered across the US and last, but definitely not least, my wonderful wife, caregiver, lover, sweetheart Lynda. Include all those with prayers from around the world and I've got it made!
Thanks to all of you for joining me on the journey. Today is going to be better thanks to you.

Friday, September 18, 2009

Remember, deciding to move when you were young (or in college)? You just did it. And about two thirds of the way thru, at 3 AM, you realized you had expended every bit of energy that you had, and you realized that was it, at least until you got some rest? Well, that's how this stuff treats you. One minute up, next minute way, way down. Now, that's not to say Thursday was bad, it wasn't. Up in AM, off to Rad, then back home to get some work done. (One must continue ones business if one is to afford having cancer.) 11 AM, deflate! "Go to Chair." Sleep! Ah ha, up and ready to go again. Work, deflate, chair. Work deflate, chair. 6 PM, off to meeting.
(Oh yeah, did I tell you that, last December, Lynda and I agreed -- well actually it was me -- to be the working chairs of the Texas Health Resources Hospital Gala benefitting an Adult Cancer Suvivors Camp? Ironic, wouldn't you say? Now, I R 1!)
Meeting went well, work went well and "out to eat with my pals, afterward" went well, but Lynda drove home, I think, and boy was the bed welcome!
I guess it's the radiation. You are walking around and all of a sudden you feel a tightness in your chest. It's almost like indigestion but more severe, but you just wait for it to pass, and it does, but it sure takes it out of you.
Enough about that. Tomorrow (which is here) is another day. It will be better. Boy, I love my wife!

Wednesday, September 16, 2009

Tantilizing, is the best way to describe how I felt today. After a really good day yesterday I met the morning sun feeling great, again! You have this feeling, "Is it real or is it Memoriex?" Well, it was real, until 11 AM, and then the bottom fell out. "Whoosh."
(An aside here, when Phyllis, my sister, had whooping cough when she about 3, her bed consisted of two living room chairs pushed together. Reason for her being there was that Charles, Phyllis and I all slept in the same room. Our parents didn't want us to get the WC also.)
The whole reason for the story is that we used to tell sister, "Time to go to chair" instead of bed. Well, when Lynda saw me "deflate," she said, "Go to chair!" Which I have done and read a book. Was able to get some food down and a chocolate malt. Tomorrow will be better! Dang, I'll be ready for some more chemo with steriods! But, it's not to be. 11 rads down 17 to go.

Tuesday, September 15, 2009

Now I know why, again, they give you Friday and Saturday off every week. By Sunday night you begin to get your wits about you again. Mentally I was ready for Monday but my body was a half step behind. So, after radiation I started dragging and it was kinda like that all day. Went to sleep about 8 PM and let the alarm wake at 7 today. What made it tough was that I counldn't get much food down. No food, no energy --- duh! Since I have now waited until Tuesday night write a lot of yesterday has gone by the wayside when I woke up, so be it! Today was much better, even tho it was RAD and CHEMO. Up at 7,off to Rad by 7:30, talked with Rad Doc and he suggested I get the obstruction "balloned" again, and I wholeheartedly agreed. But first, ran it by the Chemo Doc. "Yep", he sez, so it's set for Thursday week. Hooray! Then to Chemo. Sat beside a guy who's got to be a spy for the US. Cool dude. (Will probably get a visit from the government for putting that in. Will let you know at a later date. If I disappear, you will know.) I kinda knew today would be good because the Chemo has some steriods in them. Tonight I'll take a sleeping pill so I'll sleep. This report was for two days. The main reason I'm doing this whole blog thing is so I'll remember what happened after this deal is over. The score today -----
Rad, 10 of 28, Chemo 3 of 6. We are all an experiment of one! I'm ready to go when the Lord sez, but I make application for an extention every night -- and morning.

Monday, September 14, 2009

Now, with background (mostly) taken care of, let me get on with why I started this blog. Sharing with everyone how cancer, and it's treatment, is treating me.
I'm already 8 radiation and 2 chemo's into my "protocol." (That's the medical name for "treatment" I've learned.) So, let me tell you how it's been.
First day, Tuesday, September 1, I received both radiation, 8 AM, and chemo, 9:30 AM. Let me tell you, after waiting a over a month to get started I was already ready to get it over. Needless to say, with all that pent up emotion I was exhausted at 1:30 when I walked out of chemo, but, I'm moving too fast.
Radiation, it turns out, only takes about 15 minutes. You lay down on a table, they set up the machine that "zaps" you about 6 or 8 places in less than 10 minutes. You get up thinking, "Is that all there is to it?" Well, it's not!
I go have breakfast and then to chemo. Well, it's not just "me" that goes, it's a mob! Lynda has decided that I'll never go to chemo by myself and then about 10 of our "closest and dearest friends" decide she can't go by herself, so it's party time! Finally, the girls "go to the hall" (so as not to distrurb my fellow patients) and the guys hang out with me. But finally, I have to bid them adieu (and tell them to keep the girls out) and I go to sleep.
Bit of info: One gets chemo thru a "mediport" that has been placed in your chest. It transports the chemo directly into a major vein of your body. Sleeping is a good thing while it's going on!
Well, this is to be my "routine" every week for 6 weeks with a total of 6 chemo's (every Tuesday)and 28 radiations. Scheduled finish date, October 9, which, incidentally, would have been the fourth day into a wonderful Mediterranean cruise that Lynda (and 18 of our friends) and I had planned until this "deal" came along.
First week, after the start trauma, you kinda believe it may not be as bad for you as it is for others, but then you realize that we all "an experiment of one" so it's gonna get you! The first week, let's describe as "tired." I learn that I don't waste energy walking and/or working out. I save it for thinking. (Thank God I've got work to plan. It keeps my mind off the cancer, of which I can't do a damn thing about other than what I'm doing!) Let's also say "thirsty." Can't get enough liquid. You should drink water but it doesn't taste good, but you try anyhow. Gatorade tastes good. Now, you pay the price if you don't hydrate. By the second week, the obstruction in my esophagus returns. (When it was orginally found the doc did a "balloon" procedure that "spread it out" and allowed me to eat.) Now I start having a problem getting enough solid nourishment down. That gets partially solved by my daughter Debbie who is juicing for me. But I still want to eat! Sometimes I can, sometimes I can't.
Second week: Chemo on Tuesday. Come home and feel great. Hey, I'm coming back with all my energy! Go great all that day. Go great that evening. Think about going to bed, but still going great! At 5 AM the next morning I'm still "going great" but know that sometime I'm gonna collapse. Finally do that evening. Sleep about 11 hours the next night. Turns out there are a bit of steriods in with you chemo. Now I'll be prepared for tomorrow! Another side effect, which I alluded to earlier, is if you don't drink enough and you don't excercise one "stops up." Well, on Thursday of the second week the radiation people weighed me and decided I was "low on water" so they sent me for a "unit of hydration." That meant going back to the chemo place and have them hook you up for an hour and run liquid into you. Well, let me tell you, that will "loosen you up." On Friday I had my worst day. Had cramps and nausea for 6 or 7 hours. Think it was tough on me? Not as tough as it was for Lynda to watch me! Let me tell you, it would be tough without wonderful care givers! I give thanks every night for Lynda and all my caregivers! My family and all my friends. The are there for support every hour of every day. Calls, cards, emails, visits and, best of all, prayers. Oh yeah, the liquid worked it's way thru my body and I became "new" again! Remember, if you go down this road, drink! Alright, that sums up the the first two weeks. Here it is Monday morning and it's that time again!
Let me give credit to Charles Rodenberger, the husband of one of my high school teachers, (and yes, I did say 1951 or 2) who taught me how to start this blog. He told me, "It's simple! Just look on the home page of the one I set up for Lou when she had cancer and it will ask you if you want to start a blog!" And, there I went. Lou was a brave one. Never gave in or up. She was an inspiration to us all and Charles keeps her memory alive. Molcielou.blogspot.com Lou and Charles attended the Levelland High School Class of 1953 50 year reunion in 2003.

Sunday, September 13, 2009

Well, now we are "off to the races." Determine a plan to get rid of the cancer and get on with out lives. We choose not to withhold the "news" from our family, friends or all the people that we work with. Wow, what wonderful support we are surrounded with, immediately. With that support also comes reports from survivors and from ones who love us who have suggestions on where they have seen great results. Wow, again! So, a committee is formed to evaulate the treatments and where to get said treatments. The committee consists of my sweetie Lynda, my three daughters, (Debbie, Angie, Sherie) and my brother, Charles, who is an MD. Let me tell you, they ask questions. First, the home town team of doctors are "checked out." Dr. Mal Turner, Dr. A. J. Dubay and Dr. David Carter. As good as they come! So, off we go with them but we are encourged to at least get "a second opinion", even by the cancer docs. So, based on some great recomendations, we approach MD Anderson Hospital in Houston, a world class cancer treatment center. We gather all the results from all our tests and FedEx them to Houston. "Sorry", they say, "we no longer accept your insurance because they chose what to pay us what they think we deserve rather than what we had orginally agreed on." Well, so much for that so let's get on with this deal.
Dr. Mal, my oncologist, offers the opportunity to participate in a study, (trial), that, if succesful, might keep me from having surgery after I have radiation and chemo. "I'll take it sir" I respond. Now, not only is my brother the MD looking over their shoulders, (did I mention that he is personal friends with them all?), but so are the "study people." What more could I ask? The Lord guides you to where you are supposed to be. Our biggest problem is choosing to turn another way. This time He let me "knock around for awhile" and then gently set me back on the course He had designed.
Just a bit of background. January 2009 brought some unwelcome changes into Lynda and my lives. In 2008, GM, the company that I had worked for 30 years, went bankrupt. In reorganization they chose to eliminate all health insurance for salaried employees on December 31,if you were of Medicare age. So, on January 1 we became members of AARP Medicare Complete from Secure Horizon, an HMO. (My I add here that Lynda and I have been the healthiest 70 year olds on the planet.) This insurance was touted as being "Medicare plus." It did have some "extras" but it sure was different. I'll stop there for now.
January 3, I fell in the hall at home and broke my right femur. Not a fun experience, but with the help of my sweetie and a good doc, on June 27 I ran my first foot race of 2009. A one miler in Plano. It was sweet. However, the prior week I had been having trouble getting food from my mouth into my stomach and my primary doc had sent me for an endoscope. The eno doc found an obstruction, took a biopsy and sent it to the lab. On June 28, Lynda and I took a little R&R trip to Santa Monica and set up camp in a beautiful hotel, Shutters on the Beach. On June 29 I received a call from the endo doc and he told me I had cancer. Stage 3. Well, there you have that!

Saturday, September 12, 2009

January, 2009, brought some not so welcome changes in the life's of Lynda and Leighton Railsback. First, GM, my company that I had spent 30 years with, went bankrupt and canceled our health insurance. Luckily, I'm over 65 so I have Medicare (insurance with the government) so it wasn't all that traumatic. However, December 31, 2008, I choose to take AARPMedicare Complete from Secure Horizons as my health coverage. I deemed it "Medicare Plus" because it had some benefits (or so I thought) that made it better than Medicare. In some later post, maybe, I may discuss that. Fast forward, three days, to January 3, 2009. Fell in the hall of our home and broke my right femur. Two days later I got three pins "installed" and I was (to be) as good as new! Rehab went well. Well enough that on June 27 I ran a one mile race in Plano. (Oh yeah, I run.) Then, June 29, while relaxing the beautiful City on Santa Moncia, CA, I found out I had eshopiseal
Well, pals, here we go! Who knows what will wonder thru my brain --- and come out my fingers? I know I sure don't!
OK, here's the "Why" and sometime later, for those who decide to join and read, (and we haven't met), I'll tell you about "me".
Why this blog? Because I've got Cancer. And, because I have family and friends that want to know how I'm doing. And, Hey, this give me the opportunity to talk to more that one person at a time! How good is that?
Now, let me tell you, you will get some "ramblings" so hang on.