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September 28, 2009: Good news, bad news. The last two (2) days have been the worst I’ve felt since I started this frigging chemotherapy. Trouble is I don’t know what it is related to: the new chemo drug, Alimta, which I had last Wednesday, or the cardiac irregularities and shortness of breath. In any event, I’ve been terribly washed out, tired, sleeping all the time and so short of breath I can barely get from one end of the house to the next. Also, wound up puking (yeah, I could say vomiting, but “puking” describes it best so it’s puking) yesterday morning. Think all this medicine caused that. Need to be sure I eat before taking that crap! Good news is I’m a little better today.
Two buddies I played ball with at Tennessee showed up here Saturday. Boy, what a pleasant surprise! They had conspired with my daughter to be sure I was around and that they would get to see me. They drove down from Knoxville, TN, took my wife and I to lunch and then took off to return to Knoxville. God love them! Folks who would drive a thousand miles just to take you to lunch have got to think a lot of you. I found out during that visit that the one who played for the Buffalo Bills has just been inducted into the Bills’s All 50th team (celebrating the 50th anniversary of the Bills) and placed in their Wall of Fame. He doesn’t generally toot his own horn, but he wanted me to know and I’m very flattered. The other guy, Dave Conway, who played with us at Tennessee, didn’t even know it. He found out for the first time along with me. You can check out the All-Pro linebacker here: MIKE STRATTON. And here: Mike Sratton.
Went in to see Dr. Bellecci today. Told her my sad tale(s). She’s going to speak with my cardiologist in Savannah and see if he has any idea how to restore cardiac rhythm -- they used to shock me (cardio version, they call it) and I would bounce back, but I don’t know if it will do any good or not. Dr. B. also sent me over for a chest x-ray with the idea of trying to see if I’ve got any fluid in and around the lungs and heart; also to see if I might have slipped into a little CHF (congestive heart failure). Whatever the case, I’m fully persuaded if I can get the heart to pump a little better I might be able to rid myself of some of this fluid. That, by God, would help things a lot, I’m persuaded. Don’t know if anybody else thinks that or not. I am, after all, Dr. B reminds, getting to be an old guy. Wonder what that means? Has she taken up Obama’s line that I ain’t worth a hell of lot these days? Nah, she wants me to live. I believe that. Dr. B. also changed the diuretic I’ve been on, saying that sometimes a change in diuretic will work wonders and eliminate more fluid.
Blood work Wednesday. No more chemo until the 14th of October, I believe it is. Hope the improvement I’ve seen today continues. Will see Dr. Bellecci again next Tuesday. The second half of his game is getting pretty damn rough. Big C is bringing it, but I’ve got a few stunts up my sleeve, too. Lot of time left on the clock.
September 29, 2008: Chest X-Ray that Dr. Bellecci ordered yesterday is back. No fluid in lung; heart is normal size. “The mass along the mediastinum in the right hemithorax is again seen but is smaller.” This contradicts the PET Scan report a little. Click HERE to see report. (You need the Adobe Reader to see this document) Of course, this report indicates it was compared with “the portable film of 26 June 2008.” Looks to me like a better comparison would be the CXR back in May or June of this year. The radiologist may have made a mistake on the year. Doesn’t really matter; am glad to know things look better.
Dr. Bellecci had a talk with my cardiologist up in Savannah today. Am to go in to see Dr. B on Thursday and she’ll fill me in on his recommendations. I remain convinced that if I can get rid of a bunch of this fluid I’ll be much better off, and I’m going to find out if that can be done -- in spite of the oncologists’ persistent focus on treating the cancer.
By the way. I had a shot (you heard right: “a shot” of Neulasta, or Pegfilgrastim 6MG) the other day. Pegfilgrastim is used to reduce the chance of infection in people who have certain types of cancer and are receiving chemotherapy medications that may decrease the number of neutrophils (a type of blood cell needed to fight infection). The doctors billed $4100.00 for that shot! Yep, $4100!
FYI: Total medical billing since cancer diagnoses: $130,000.00!
October 1, 2009: Whups! Almost forgot to post this update. Kept my appointment with Dr. Bellecci today. She made me bring in all my medicines and everything else I’m taking -- the actual pill bottles, etc. I, of course, didn’t like this a whole lot and I’m sure she thinks I’m a little mad -- meaning crazy, of course! Probably am, but what in the hell does one have to bring a grocery bag full of medicine to an inspection when he has already furnished a detailed list of medications, etc. including dosage, brand name and generic if applicable. It’s embarrassing, quite unnecessary and gives the unmistakable message that I’m stupid and dirt dumb.
Moreover, when the day comes that I don’t know what medicine I’m taking and it’s alleged purpose I’ll be in pretty bad shape and ready for the oblong. But I want to live, and while I’m still in that mode I’ll do anything and take anything for the moment, including hauling around a grocery sack full of pills.
Toward that end, Dr. B, bless her heart, is doing everything she can to find out what accounts for and successfully treats the persistent edema, shortness of breath and painful neuropathy. She ordered some more lab work, a holter monitor (24 hours) and an abdominal CT ahead of my appointment with my cardiologist in Savannah on the 15th. I will, of course, follow through with all this.
Will report to the poison mill on the 7th for blood work and a dose of Zometa, the bone building acid stuff. For those following this saga and who might care, I’m feeling really good at the moment considering the shape I’m in! I will not be defeated!
October 12, 2009: Hi, folks. Today is Columbus Day. Tomorrow is my birthday! I’m 70 and still kicking! How about that? I look forward to celebrating my 80th! It’s been a very good week! Tennessee finally turned in a good ballgame and beat the daylights out of Georgia. Hope they can now continue it. They better. They've got Alabama next, on the 24th, the infamous "third Saturday in October."
Got the Zometa on the 8th. Had to change the appointment from the 7th since my cardiologist was able to move my appointment with him up a week. See below. Anyway, I faired pretty well with that -- no real bad side effects.
I saw my cardiologist in Savannah on the 7th. (Was able to move the appointment up a week, as I said.) He did an echo-cardiogram. Results were good. I have no fluid around lungs/heart, no CHF, and I’m jumping back into fairly normal rhythm on my own here lately. I bet that disappoints the Big C and a few of my more dubious “friends” and neighbors. Further, the heart doc kicked up the Lasix and told me to elevate my feet and legs as much as possible during the day. Seems to be helping. I don’t have nearly the edema that I did and my feet and legs are greatly improved and I’m not nearly as short of breath. Remarkable how much better I feel after being off the poison for 3 weeks. Of course, I go in Wednesday for another treatment with the Carbo-Alimta. Wonder if it will knock me back? Doesn’t matter: if it does me bad, just think what it’s doing to the Big C! Bring it, big boy! I will continue to kick your butt!
October 14, 2009: Had my chemo today -- 2nd treatment with the Carbo-Alimta cocktail. Organization and wait time in the doc's office is getting worse though. Am happy this is my only complaint and what the hell else do I have to do? Nevertheless, had an 8 a. m. appointment. Wasn't called in to get the lab work done, IV set-up, etc. until 8:35 a. m. There was no excuse for that I could see. I was the 2nd guy in the house. On top of that, I waited and waited for Doogie. He likes to talk, but I can forgive that. Cancer patients somtimes need very much to talk and he is real good about giving them all the time they want, including me. In any event, it was after 9 a. m. before he came in. As luck would have it the first machine readings on the platelet counts didn't look right so he had the nurse stick my finger and re-do some of it. They also had to send something over to the hospital (I think to check my potassium levels). In any event, everything looked good and I got the full load of the poison today. But I was there better than 4 hours. It ain't right! But I feel fine so far. It's usually a day or two later when this cocktail kicks your butt. I'll let you know if I get to puking again. I know you're dying to know that.
I met another friend of a friend there today. I had seen her there a couple of times and I enjoyed meeting her. She seems to be doing well and seeing her on the street you would never know she had cancer. She also hangs out with the Idiots on the Green Screen.
As for me, I'm doing really well. I intend to be cured (well, in remission, 'cause I doubt anybody is ever 'cured' and certainly not if the Cancer Industry has anything to do with it) by Super Bowl time, February next year. That's my story and I'm sticking to it.
October 23, 2009: Sorry for delay in updates. Last Friday, October 16, 2009 at 11:44 p. m. I had a heart attack. Based on no evidence whatsoever, I'm fully persuaded it was precipitated by the Neulasta shot (that $4100.00 baby) that I got Friday morning, two days after my second regular chemo treatment. My white blood count (wbc) was at 68,000 when I got to the hospital. Normal is 4500 to 10,000! Neulasta is designed to stimulate the bone marrow to produce white blood cells; it is supposedly given as a matter of course 24 hours before or after chemo using Alimta as this poison supposedly lowers wbc. Queston: why the hell give it to me absent any evidence of low wbc? Intend to find this out.
Anyway, the heart attack was described as a nstemi: NSTEMI (Non ST-segment Elevation Myocardial Infarction). This condition, also called non Q-wave myocardial infarction, is diagnosed when blood tests and ECGs suggest a heart attack that does not involve the full thickness of the heart muscle. The injury in the arteries is less severe than with a full-blown heart attack. With a NSTEMI, damage to the heart muscle is confirmed by EKG changes and blood tests (like elevated Troponin levels in my case,), but on cath there is not a new blockage. The injury is sometimes described as "epicardial", or just on the surface of the cardiac muscle.
Anyway I lay in Satilla's ER for some six to 8 hours while hey did their thing. Care was prompt and consistent with best medical practice standards, but understand the cardiology folks at Satilla didn't know me from a hole in the ground, but to their credit they made the effort and was successful in consulting with local primary doctor and with my cardiologist in Savannah. It was decided that I needed to be transferred to Savannah for a cath and care by the cardiologist most familiar with my case. So they loaded me into a little old rickety-ass ambulance and hauled me to Memorial in Savannah where I lay in ICU through the weekend. [NOTE: Try not to get seriously ill on a weekend!] Anway, my cardiologist came on Monday, did a cardiac catherization and found my heart to be the same old heart it has been. No new blockages, no damage, refraction rate of 65, which means it's pumping good and no serious damage done. Did leave me pretty well wiped out though. I was released late Tuesday afternoon and arrived back home early that night. Have been laying around taking it real easy since then, but am regaining strength and stamina daily so far. This is Friday, but am not going to Ware's ballgame tonight. Don't think that would be prudent. Will call and re-schedule my appointment with Dr. Singh & Srinivasan next week for blood work and some discussion on where I go from here.
Another note of interest: Already got the bill from the Ambulance Service (not the Ware County Service, mind you): $2012.00. Those who are out of work and having trouble making ends meet these days might look into buying you an old used panel truck, paint you a cross on the side or something and go into the ambulance business. Talk to you later.
October 27, 2009: Went in today to see Dr. Doogie to have some blood work done and to talk. Had a 3:00 o’clock appointment. Was nearly 5:00 p. m. before I left. That really pisses me off, but what can you do? Anyway, I made my case for the chemo and/or Neulasta shot causing my heart attack. Nobody believes that, of course, but that’s my story and I’m sticking to it.
Anyway, bottom line is we’re going to postpone the next chemo treatment for a couple of weeks and will NOT have the Neulasta shot unless there is compelling blood test evidence that my white blood count is drastically low and that I am at high risk for Neutropenia (a condition of the blood, in which your white blood cells have a low count of neutrophils). I don’t think that’s been the case with me and I’m not taking the Neulasta shot otherwise. I’m satisfied I do not need to have the Neulasta just as a matter of course with the chemo protocol I’m on. WBC today, for example, is still 24,000, two to three times normal. INR count is 1.5 (it needs to be 2.00 to 3.00) so I’m to increase the Coumadin and check blood next week, Wednesday. Next chemo won’t be until November 18. That will complete three (3) cycles and then we’ll do another PET scan to measure progress.
In case you’re interested, medical billing since my diagnosis, including the heart attack a few weeks ago stands at: $190,000.
November 11, 2009: Went in for chemo today, earlier than I thought since I felt like I could handle it. (3.5 FRIGGING HOURS; NO EXCUSE FOR THAT!) But like I said, I’m not going to take the high-powered shot unless the WBC levels really drop by Monday; go back in for blood check then. I am still beat down pretty bad from cumulative effects of chemo and the heart attack didn’t help much. Moreover, this last chemo completes this round with the Carbo-Alimta combination. I’ll go for another PET scan in two or three weeks and see where we stand and back to the oncologists for their recommendations.
For those who keep asking, I’m doing all right. I feel like a very, very old man these days and I know I cannot keep taking this poison forever. It may be I can go on some kind maintenance plan and leave the rest in God’s hands, but I still fully intend to see my 80th birthday. The football analogy I’ve been using throughout these reports is still pretty applicable. It’s a tough ballgame and it’s hard to get through Big-C’s line and score points but we still have plenty of game left and I will find some way to slide through and beat this sucker. Thanks for your concern and especially your prayers. I do appreciate it.
November 16, 2009: Back to Dr. Singh this afternoon for blood work. WBC at 10.5 (that’s thousand). Remember, when I had the heart attack it was at 68,000. 10.5 is upper level of normal. That’s good! Dr. Singh opined that I have an “extraordinary bone marrow capacity.” I’m glad something is “extraordinary!” The good thing is I don’t have to have that Neulasta shot! Anyway, Dr. Singh scheduled a PET Scan for me in Jacksonville for Thursday, December 3, 2009. Got to keep check on blood in the meantime. Blood was way too thin: INR at 5.1. It should be between 2 and 3. Adjusted Coumadin. Will go in Thursday to check it.
Go back to see Dr. Bellecci for medication review on December 7, 2009. Nothing else scheduled. Am still plugging along, trying to get a few first downs. Can’t make the trip to Griffin this Friday for the game. Good luck, Gators. I’ll be pulling for you to have the game of your lives. Griffin hasn’t been beaten, and we may need it! It can happen!
November 25, 2009: Not much going on now. Just waiting around to have my second PET scan on December 3, 2009 in Jacksonville. Have a terrible head cold; hope the hog doesn't have me. I got the regular flu shot last month, but I haven't had the Swine Flu shot. Head has a dull ache and feels like it weighs 300 pounds. Have awful hacking cough. Went in to see Doogie today. Did blood work. All the counts look good. So maybe the head cold is just normal for the times. Anyway, Doogie prescribed one of those Z-Paks (Azithromycin, 250MG). Hope it helps. I feel like dog doo! But not too bad to pig out. All the family gathering over at Number One Son's house for the feedbag tomorrow. Happy Thanksgiving. Count your blessings and give proper thanks for them.
December 4, 2009: Dr. Singh's office called me this afternoon and told me he had just gotten the written report from yesterday's PET Scan. He said things "looked real good" and told me if I would run by he would give me a copy of go over the results with me. Needless to say, Diane and I hauled butt over there.
Dr. Singh said the metabolic activity in the nodule in the lung had faded dramatically, and while the tumor at L4 appears as though it has increased metabolically (that is how bright the lesion shows) it's not unusual for bone tumors to be much slower to fade. The one involving the left iliac crest (hip) is improved over the prior exam. In short, Dr. Singh seems to be well pleased and said categorically the "treatment is working." There is no sign of additional tumors anywhere, which is also tremendously good news. Bottom line: I'm much improved and there appears to be compelling evidence that I've taken the lead in this game. Needless to say, I'm happy about that, but I know not to take anything for granted. While I may have scored some points, I'm not exactly gotten the Big C completely subdued but there appears to be a more than reasonable chance that I'm going to kick his ass considering the number of folks praying for me. Make no mistake, I know what the prayers have done for me. All I have to do is hold my own in the final quarter. Here's the plan:
We will do another cycle (one treatment every 3 weeks for three weeks: 9 weeks altogether) of chemo with the same drugs, Carbo + Alimta (they are working, according to Dr. Singh), and try to turn the lights out altogether on the nodular density in the lung. We can probably radiate the tumor at L4, maybe during the chemo -- if not then shortly afterward -- and prospects of getting it killed off seem to be pretty good. So, long story short, we enter the 4th quarter with a lead and the onus is on me not to screw it up. And believe me, I don't intend to. I will punt on fourth downs and my defense is strong and well conditioned. In point of fact, it lives for the fourth quarter. So let's get it on, and thank all of you who care for your prayers and good wishes. Have a great Christmas!
P. S. For my physician friends and anybody else who might wish to see it, here is the written report of this latest PET.
December 8, 2009: Four (4) hours today for chemo. It's getting worse in terms of time, folks. Good thing I have nothing else to do. Anyway, one down and two to go for this cycle. WBC is elevated again at 12.5 (that's thousand). Normal is 4 to 10.5. Figure it was because of the head cold I had a week ago. Bone marrow still kicking in good, I reckon, to fight fever and infection(s). No reason to think I'm going to have that dang Neulasta shot again in this cycle. Not if I have anything to do with it, of course, and I do! INR down to 1.5. Need to jack up the rat poison a little. Will take 7.5 MG on weekend and 5 MG on week days. Will check blood again in week. I just love getting all this sticks. NOT!
Still trying to get the bills and stuff straight at the hospital from heart thing back on 10-17-2009. Seems like every thing in a white lab coat working for Satilla Regional came to see me during those few hours in ER. And they're all billing for hundreds of dollars. Sure takes a lot of folks to tell me they can't do anything for me and would be shipping me off to Savannah in that rickety-ass ambulance. I have no idea who all these people sending bills to me are nor do I remeber them. Having a hell of a time convincing United Health Care that they are all hospital employees and would be in-network. UHC trying to count them out-of-network and applying their charges to out-of-network deductibles. Geez!
NOTE: Billing since diagnosis has topped $200,000!
December 15, 2009: Went to Dr. Singh's office today for blood check. Had a B-12 shot, and finger stuck twice. All counts acceptable. Told Doogie this past week seems to have been a little worse in terms of feeling awful. Lingering head cold may account for part of it. Lungs sound fine though. Got no energy, no stamina. Oh, and football season is winding down. High schools are finished. Nothing but bowl games left in college. Professional ball is heating up though as the play-off bound teams are beginning to surface. Anyway, the end of football season always depresses me. Looks as though no consideration for radiating the spine tumor will take place until after I finish this cycle of chemo. Next treatment is set for the 28th and the final treatment of this cycle will around the 19th of January, 2009. I'm on schedule to know where I stand by the Feburary 7th Super Bowl -- like I said! May not be back with anything else until after Christmas. Have a blessed one.
December 28, 2009: Went in for chemo this morning. Blood work all good or acceptable. NO NEULASTA! They had me scheduled for the 29th on the books but had given me a card for the 28th. Much to my delight they went ahead and got me in. Hung out with an old friend in the commons area (this is where a dozen or so patients all sit in antiseptic recliners and get their poisons). Was probably the fastest I've ever been through the ritual since I began treatment back in June; was in and out in just under three (3) hours. I can stand a little of that.
Maybe they knew that I had had one of the worst couple of weeks post-chemo of the lot following the last visit and were sympathetic. Sure as hell hope I don't have more of the same this time. I feel pretty good so far. Got the same old problems: tiredness, fall to sleep at the drop of a hat, wear out at the littlest exertion, legs shot all to hell, numb from about mid-calf of both legs to the end of my toes, skin there remains red and scaly, like a bad burn trying to heal (neuropathy, I suppose), and food is not as good as it once was, but I've lost no weight and haven't quit eating. Although frequently nauseous, I still haven't experienced more than one or two episodes of throwing up and I think that came from all the dietary supplements and antioxidants I've been taking. I slowed down and/or quit those things and I improved in that area. I've had a bad head cold for a couple of weeks and had a couple of rounds of antibodies. Hearing is diminished but I think it's wax build-up; got an appointment with ENT man on the 5th of January. Sure hope the chemo is not making me deef! Hehehe.
Anyway, the treatment today completes round two of the three-treatment cycle. I have one treatment to go in this cycle, and then I think we're going to explore the radiation of the spine tumor at L-4. I'll probably have another PET scan before that though and then there is the problem of being kicked out of my former insurance plan with the state. They forced all us retirees into a Medicare Advantage Plan (MAP) effective January 1st and I don't know what kind of problems I'll have with that. A lot of physicians aren't willing to take the crap and I figure its the beginning stages of the Obama "death panels" but what do I know?
We had a real good Christmas. All our children and five (5) grandkids were here and there didn't seem to be nearly as much tension in the air as some years. Hope you had a great Christmas and that we all have a good New Year.
January 5, 2010: New Year. New stuff on the horizons for me. Here's what's happening. Been half 'deef' for a few weeks. Been fighting a little anxiety about whether this hearing loss was a result of my present chemo therapy. Oncologists didn't think so. Got in to see Dr. Ramesh this morning at 8 a. m. He checked me out and concluded that my problem was most likely due to wax build-up in left ear. Quite an impaction there, he said. Right ear was pretty clear. Anyway, Dr. Ramesh and one assistant went to washing and drilling and pretty soon had me cleaner than a whistle. Hearing is back, impaired as always, but as good as it was. Hurrah! Three cheers. Ramesh is a good ENT man. Don't base that assessment on just this trip; I've seen him in the past and he did a wonderful job on one of my granddaughters who has some problems when she was little. He put some tubes in and best we can tell she's fit as a fiddle today.
Left Dr. Ramesh's office, picked up a sausage and egg biscuit at Jerry J's, coffee and orange juice, and made a 9:30 appointment at Dr. Singh's office. Place was overflowing, no parking places, hardly a place to sit down. Folks in the office said it was kind of typical following the holidays. Anyway, got in and out in a couple of hours. Spent a good deal of time talking with Dr. Singh. He is referring me down to Baptist Health, Jacksonville, where they have some of the newest radiation nanotechnology for a counsult. I have appointment for Thursday, January 7, 2010. Will be seeing Dr. Sonja Schoeppel to review my situation and begin planning if they think they can zap some mischief out of the Big C still hanging around. I really have a good feeling about this, but we'll see. Some pretty amazing stuff going on now in radiation oncology in the hands of competent people. Preliminary understanding is that my new insurance will cover it, and need I tell you, that's a good thing!
Next chemo presently scheduled for Jan. 19, 2010, 8:15 a. m.
January 7, 2010: Kept my appointment with the radiation oncology folks at Baptist Health Cancer Center. Everything seems to be good, including their willingness to accept my new insurance. Told the chief billing lady, with whom I met first, of course, that the single most important question/issue I had is whether they were going to accept this insurance that I had. She said no problem. I said good, 'cause I do NOT want any service from any vendor there that do not accept the insurance plan that I'm presenting with. She said she understood, and I feel good about that. Feel good about all the folks I met there for this consultation. Dr. Schoeppel, a nice lady with an 11-year-old son who is a goalie for his school's soccer team. Dr. Schoeppel was trained at Stanford.
Anyway, they have this new Novalis Tx radiosurgery machine. They've had it since last February, a little under a year, but his whole team of physicians have been dickering with this kind of nanotechnology for a good while and appear to be on top of their game. Dr. Schoeppel said she thought they might be able to kill of this spinal tumor with one shot; said it could be three, but they wouldn't know that for sure until after my work-up. Anyway, sounded good to me and threw in with them and signed up. They'll work out the schedule and planning. I'll be making several trips to Jacksonville in coming weeks.
Don't know exactly how the medical folks are going to integrate the radiation with the chemo, but I'll finish this last Cycle of chemo on the 19th of January; of course, there is some room to move that around if necessary. Anyway, Dr. Schoeppel will talk with Dr. Singh and they'll get back with me on appointment schedule. Looks like I may indeed have a good handle on my status, etc. by the Super Bowl, like I've always said. Am I good or what? (Addendum: chemo on 19th canceled.)
January 13, 2010: Back to Jacksonville today for about 3 hours of scanning. They made a mold of my body, scanned me and then sent me for an MRI. They will apparently merge or fuse all this into a kind of template to help guide the Novalis machine which will zap the spine tumor.
Got to tell you though, these folks at Baptist didn't engender as much confidence as they did on my first visit. About as an incompetent a clerical operation as I've ever encountered. Wound up filling out the same form four (4) times; they couldn't get the paperwork from one desk to the next and one of those dreaded "we don't take that crap you got for insurance showed up" and I told them it was a hell of time to be telling me that after gushing all over me last week and saying something entirely different.
Long story short, they got it figured out after I told them that I didn't want any service they had there if they didn't accept the insurance I presented with and since they had already told me they did accept it, I wasn't paying a damn dime of the money I already owed them. They went to scrambling and called me back and apologized. Apparentldy some old bulldog know-it-all woman at Baptist didn't get the memo. Anyway, they said I was good to go. I'm all marked up and they working on the plan and will call me back in a few days. I hope the medical practice there is better than their clerical operation. By the way, the MRI was done in truck parked out in the parkaing lot. I asked them if they couldn't afford to put that thing inside. They didn't seem like they were accustomed to stupid patients asking questions and stuff. Oh, well, I'm still hopeful.
January 20, 21, 22, 2010: Been burning the road up from here to Jacksonville for the last few days. Had the radiation treatment on the spinal tumor this week: three days, three shots. My vision is that of that old tumor sitting there on the spine chilling in its Donald Duck bedroom slippers, fighting off the poisons we've been socking it with and then all of a sudden this week we shoot the little bastard with these beams of radiation. I can see him now, sitting there, chilling, when all of a sudden he yells, "What the hell is that?" And then he begins to squirm and shrivel up and dies. I have every idea he's ruined -- that's my story and I'm sticking to it. We won't be able to confirm that for awhile, but this machine, the Novalis Tx is quite amazing. It's one of the newest nano-technologies and Baptist Hospital in Jacksonville got their operation set up last February. There have been some really good reports about this technology and I believe with all my heart and the prayers being said for me it's going to give me good results. The machine focuses the radiation to the tumor itself, barely disturbing normal tissue: "Shapes the radiation beam to match the exact shape and size of the tumor or lesion, ensuring the maximum prescribed dose of high-energy radiation is delivered to the entire tumor while protecting surrounding healthy tissue." The machine adjusts via computer calibrations "the treatment beam to breathing and other body movements to continuously maintain safe, complete and accurate dose delivery." It's all out-patient: drive in and drive back home. Piece of cake with the exception of about 3 hours driving time daily. But it won't last nearly as long as the chemotherapy did.
It is painless. You just lay on the table and Novalis Tx just follows the treatment plan the team of physicians, physicists, technicians and nurses have put together and rotates around your body stopping at the prescribed intervals and angels and zapping the miscreant where it hurts the most. Good-bye Big C! Bet you didn't see that coming! Anyway, we're going to introduce the remaining bits and pieces of the tumor in the lung to Novalis Tx and the little spot on the illiac crest (top of hip bone) is going to get one shot and then I'm going to wind up the poster boy for Dr. Singh and Srinivasan and the Baptist Cancer Institute. Thanks for the prayers. Below is a picture of my new best friend, Novalix Tx:
February 5, 2010: Went to Jacksonville Mon, Tues, Wed, and Thursday this week for dates with Novalis Tx. (I'm changing the machine's gender to female; having dates with males just doesn't seem right.) We were zapping the remains of the lung tumor. Tough days in terms of driving and traffic, but the date with Nova was satisfying. Still a piece of cake in terms of treatment and very few side effects. Get a little tired and beat down, but that may be more loss of sleep than anything else. Appointments were all at 9 a. m. and the steriod (Decadron) they're giving me keeps me waking up at night. Been getting up around 4 a. m., out to McDonald's by 6:30 for breakfast and on the road to Jax by 7 a. m.
Will get marked up for the one (1) shot to the hip coming up next week and then I'll be done with Novalis for awhile. Then I guess we'll get a Pet Scan and see where we are. I certainly feel a lot better since I've been off that chemo. Haven't had it since Dec 28, 2010.
February 9, 2010: Made a 9 a. m. appointment this morning in Jacksonville (Baptist Cancer Institute) for the "simulation". This is what they do to get me all positioned and marked up for another date with Novalis Tx. Had a CT scan (wonder how many of these I've had since last May), and lay on a mold that they inflated to make a kind of cast for my upper body, and then marked me up literally, with a Sharpie! Using the mold and the markings and the CT scan, the doctor and the rest of the team will plan the radiosurgery to what's left of the tumor on the iliac crest (hip). When they're ready, they'll call and set me up an appointment to come in for the date with Nova. They're only going to shoot this one time. Then I'm done with the exception of whatever follow-up is required.
I continue to do well in terms of side effects and debilitation. My legs are still shot, with the neuropathy still very much in evidence in both lower legs: lot of redness and numbness. Stamina is no good. No additional problems with the heart; in fact, I do not think I'm in atrial fib any longer. Don't have a lot of shortness of breath and no noticeable rapid heart rate. All in all I feel pretty good in comparison to what I have felt over the past several months. I remain encouraged and am praying to be able to report a remission in the coming weeks. Keep those prayers going.
February 12, 2010: Hip, hip, hurrah! Had my last date with Novalis today at 1:00 p. m. Shot to the hip. Whole crowd showed up for this one! I thought it was because I was graduating, but it probably was because I was the first "pelvis" they had ever done. Not that the graduation wasn't important: when I was finished they all hugged me and gave me a hot-cold canvas bag big enough to hold a small picnic and sent me on my way with an evaluation form to complete and return to them. Also gave me an appointment for a return visit in six (6) weeks with Dr. Schoeppel for routine follow-up. As the blue bag said on the side: "Novalix Tx, Surgery without a trace." Seems to have gone well, the staff seems to be confident they've accomplished much in my case and I'm confident they did.
As Dr. Bellecci tells me, I probably need a good "detox cleansing" now, especially if Dr. Singh and Srinvasan think I should have another round of chemo (God, I hope not). Another possibility is that they'll recommend a maintenance regime. I guess another PET SCAN will underpin that decision/recommendation. I'm to return to S&S in a couple of weeks. Haven't made the appointment yet.
Finally, I highly recommend the folks at Baptist Cancer Institute. They had some clerical snafus and there is the usual turf guarding behaviors between the departments (Out Patient Center and the Institute itself) that play out in front of patients from time to time, but all in all it's an efficient operation and a nice treatment experience, espcially the Novalis Tx which I had. That seems to be an amazing machine. I'll have to wait awhile before I know what exactly it did, but I can tell you now that the whatever it does it's painless, comfortable and quick. It's also very, very expensive.
Through today, the charges for my cancer treatment exceeds $300,000.00! Again, this doesn't mean the vendors will be paid nearly that much, but this is what they have billed.
February 16, 2010: Rats! Met with Dr. Singh today. Had some blood work done and reviewed my status. I am doing wonderful if we're to believe Dr. Singh. But he recommends we do one (1) more cycle of chemo, three (3) treatments make a cycle in my case. Here's why as I understand it. Having Stage IV cancer it cannot be denied that the devil split off and ran to other places in my body. In my case it went from the Lung to the spine (L4) and to the left Iliac Crest (hip). Thus far, there has been no evidence (from Pet Scans, etc.) that the Big C has homesteaded anywhere else. This has always been very good news and remains so to this day.
So we began chemotherapy and there is little doubt the poisons roughed up the Big C a good deal, but he's a doggone good survivor in most cases, mine included. It is hard to kill him. But then you can't take these poisons forever; they'll kill you about as certain as the Big C. So we hit him again with this new nanotechnology via the Novalis Tx machine: "Surgery without a trace!" they say of it. It's a pretty amazing machine and my doctors and I both feel that Novalis kicked ass on the tumors I'm known to have. In fact, they say they're confident they killed about 95% of those cancerous cells. That, of course, means there may be a few laying around waiting to come back; there is also the possibility that there are some traveling cancer cells elsewhere that just hasn't surfaced yet. Hence, the recommendation.
As Dr. Singh explained, there is another option: do nothing but get a Pet Scan now and watch and wait. That is NOT his recommendation, however; he thinks it is allowing too much to chance and that is why he is recommending another round of Chemo, then get the Pet Scan and, if it shows me "clean" then we'll watch and wait. Besides, a good deal of time is necessary to really see what Novalis accomplished -- several months, actually. Anyway coming back with more chemo is consistent with other things I've read and with other advice I've gotten. And this is what I've decided to do.
I do not look forward to more chemo, but now that I've got Big C down I intend to kick out his guts. I'm regarding it as an overtime and I've won the toss! So we'll go for it. More poison next Wednesday, 2-24-2010. Keep the prayers coming. That's my greatest defense and you've done wonderful by me to this point. Thanks a million.
February 24, 2010: Poisoned again this morning. Appointment was at 8:00 a. m.; got out about 11:15 a. m. No problems, but I can tell I had chemo. Look for things to get worse in the next couple of days but then I'll begin to revive. Next chemo is in three (3) weeks. One more after that and then a PET scan if I can find some vendor that will take this sorry-assed insurance the great State of Georgia forced retirees to accept. They would have preferred us get out the State Health Iinsurance Plan altogether. Maybe I should have, but then anything else would have gone a long way toward bankrupting me. Only thing I've seen Barack Obama being right about so far: health insurance companies have become the biggest crooks in American History, rivaling the Railrods in the late 1800's, Big Oil for the last 50 years, Banks and Financials forever, health care providers for the last 25 years.
March 2, 2010: Was in Savannah today (no, not to hang out with Obama; he was at Savannah Tech, but I was just across the street from him.) to see my cardiologist. I sent word over to the Obama man and told him I was just across the way from him if wanted any advice. No one ever came for me so we just left and had lunch at the Olive Garden down Abercorn and came on back home.
It was a regular appointment the heart doc. He said I was looking good. I told him to add a couple of bucks to his fee for that. Seriously, he said the old ticker seemed to be holding up pretty well and to show his confidence he gave me an return appointment in four (4) months.
March 17, 2010: Happy St. Patick's Day! I had plenty of the good Irish luck today. Went for the 2nd Chemo of this Cycle and it turned out to be the most efficient run-through of this long ordeal. Had 8:00 o'clock appointment. Got in and out just before 11:00 a. m. Bless those people for making it easy for me one time.
Blood counts are all good. WBC has returned to "normal" according to Dr. Sri. I'll probably have some misery in the next 3 or 4 days. But I'm getting jacked now. Have the last chemo in three weeks, April 7, 2009. Then the assessment. I really think we have kicked the Big C's butt pretty well and I'm hoping for big smiles and congratulatory tidings sometime in April. But we'll have to wait and see. Keep your fingers crossed. For those who pray, pray; for those who don't, don't screw it up for the rest of us.
April 2, 2010:Look here. Just because nothing appears here for a period of time doesn't mean that things are worse. If anything, it means things are better. That is to say, there is nothing to report. Just wanted to clear that up for those who have been wondering what the silences mean. Anyway, I went down to Jacksonville today (Baptist Cancer Center) for a routine follow-up with Li'l Sonja. She's the tiny physician who managed by courtship with Novalis Tx. She's so tiny she puts me in mind of me leprechauns, so I call her "Li'l Sonja. Full name is Sonja Schoeppel, M. D. Although I haven't had a PET since December (the S & S boys, Singh & Srinivasan wanted me to have another cycle of chemo before another PET) Li'l Sonja said I certainly "was looking good" and absent any new symptoms she felt confident I was doing well. She wants to see the PET results and I assured her she would get them. Remember, the full effect of the Novalis radiation treatment won't be completely evident for about 6 months. That's a ways off yet. But all in all, I remain confident that I'm greatly improved and once I finish this last chemo on April 7, I can maybe have some time to heal and rejuvenate from these blessed poisonings. Keep the faith and thanks for all the prayers and good wishes. You've been the greatest defense against the Big-C, dreaded scoundrel he is!
NOTE: Since my first diagnosis almost a year ago, healthcare providers have billed right at $700,000.00.
April 7, 2010: Hurrah! Congratulations was the word at today's chemo, my last for awhile. Maybe I can use that 3 to 4 hours for something else in my life. Doogie seems hopeful. L'il Sonja in Jacksonville seems to think I've done well. Pet Scan will be ordered in 2 to 3 weeks. I'm reminded by my doctors that this PET may very well still show some hot spots, especially from the radiation. It'll be about six (6) months out before the full effects of that is in evidence. But we can reasonably hope for a much darker scan and that will be good news. I'm excited. I truly believe that God has stepped in and guided the medical care and that I'm going to have results that surprises everybody. Keep your fingers crossed and the prayers coming.
Job one now is to get through the knock down that chemo always lays on me. It may be rough for several days now, but I can make it with my hands tied behind my back.
April 14, 2010: Pet scan has been scheduled for Wednesday, April 28, 2010. Am beginning to turn the corner from last week's chemo. Feeling better and better now. My fervent hope is to be able to stay away from the poisons. Too many body punches begin to wear on you. I will prevail though. Keep the faith and keep those prayers going for me. Without a doubt they're working.
April 28, 2010: Was prompt for my appointment this morning in Jacksonville for the PET Scan. Today is three weeks out from the last chemo. I am bouncing back real well. PET Scan folks asked how I was doing. Without hesitation I said, "Great! I'm here for you all to prove it!" Results should be in Dr. Singh's office tomorrow or the next day. I'll let you know what the results are and what the game plan is. I really hope that I can come off the poisons for awhile. That will be a miracle I can believe in.
April 29, 2010: Met with Dr. Singh this afternoon to review the results of the PET Scan I had yesterday. It is a great report and we were all hugging one another. The tumor at L4 and the one of the left iliac crest (hip) are gone! The small tumor in the lung has dimmed considerably compared to previous studies and now has a maxium SUV value of 3.1. However, this uptake may be merely caused by some residuals of radiation by the Novalis Tx treatments I had back in January and February and not any indication of continuing cancer. There are things that cause false readings on PET scans; I'm confident this is what we're seeing here. After all, how could the rather large tumor at L4 be resolved, the smaller but troublesome tumor on the hip be resolved and the bean-sized tumor in the lung not be? I'm calling it a remission and a miracle I don't care what anybody says. Dr. Singh even classified my case as an "almost remission" and was very, very pleased with the report. And there are no signs of cancer anywhere else in my body. But to be on the safe side, he wants to give me three (3) more treatments of Alimta. He is taking the Carboplatin out of the protocol (treatment drugs) altogether. Yeah, baby, I'll take that.
In short, I am happy to report that while I'm battered and bloody and beaten down, I'm not nearly as bad off as the Big-C. We've kicked the guts out of his arse, thanks in large part to the prayers and the good wishes of my friends. We won this game, I think, but I don't want to play the sucker again! This was Stage IV Lung Cancer, folks; not often you kick the guts out of this fella. I feel really good at the moment. Darker days may reappear in the future, but if that's a few years down the road then we'll call it a cure and prepare the birthday cake for the 80th.
Thanks for your prayers, and for caring about me. To those who were looking forward to the bell tolling for me sooner rather than later, eat your hearts out!
Want to read the PET report for yourself, click HERE.
May 6, 2010: In today for the first of three (3) more doses of Alimta. Took me about an hour to get in, blood work, analysis and to see the doctor, but then it took only about 40 minutes to get the poisons, etc. -- less than two (2) hours this time. Am anxious to see how this round goes without the Carboplatin. So far so good. Am a little short of breath. I believe the steroid Decadrone does that and I believe I'll insist on doing without that the next time I go in, which is scheduled for May 26, 2010. Decadrone's only purpose in my case is to head off a skin rash that is sometimes a side effect of Alimta; I'll just tell Doogie I'll sign a waiver or something. Hehehehe. All in all I'm still pretty giddy about the last Pet Scan report.
Little Sonja (the doc at Baptist who ramrodded my dates with Novalis in Jan and Feb) called me yesterday afternoon. That was awful nice of her. She was giddy, too, after seeing the Pet Scan Report. Natrually, she tends to credit Novalis for the good news; she's probably right, but I tend to credit all the prayers and everything else folks have done for me and to me. Makes no difference. It was a good report and I look for it to get better. If I can get off the poison for awhile then Dr. Bellecci and I will consider her detox program and maybe get all the toxins flushed from my system. I'm going to beat the unbeatable and of this I am sure. Praise the Lord!
May 26, 2010: In today for 2nd chemo of this 3-treatment Cycle. The last treatment knocked me on my butt for a few days, but I recovered fairly quickly and the wife and I managed a trip to West Virginia last week. We returned on Sunday and took three (3) days to recover. Long haul that trip to WV, but we stopped a lot and walked around and made it okay to and from. Enjoyed it very much and got to see some old friends, all of whom said they were very surprised to see me looking so well. One fellow in a little eating establishment in Alderson greeted me and said, "I heard you was about dead!" "They lied!" I shot back, and I don't plan on accommodating them any time soon. Mountaineers got a way about them you don't see much anywhere else, bless their heart!
Again, let me remind you that any scarcity of reports here is good news: means I have nothing to report and nothing to report means I'm doing great! I will finish this Cycle of chemo on June 16, 2010. Will have another Pet Scan, I'm guessing, about 3 weeks from then. Doogie today described what we're doing now as "maintenance" and "mopping up any microscopic cancer cells that may still be floating around..." We're going to do some serious discussion about getting off these poisons though after this next Pet Scan which I anticipate to be even better than the last one. Keep praying for me. Thanks.
June 16, 2010: I finished this cycle of chemo today. Had an 8:00 appointment; finished up 3 hours later. The delays and waiting game have not improved but I have. Even though these last chemos have been pretty rough: severe fatigue, constipation, constant nausea and the legs, especially the left one, feel like limp appendages, just flopping there and they hurt some, but I don't have to go back to Singh's office for one (1) month, July 15, 2010. Hurrah! I guess we'll talk about another PET Scan at that time. I'm really hoping for a vacation from the poison. Would be great to get to a remission or stable condition where we just watch and wait. I haven't lost faith in that happening. Thanks for all the prayers.
Again, if no reports show up here for awhile it will mean there's nothing to report. That's a good thing. Now I just got to bounce back from this treatment today -- probably take about 10 days. When I know something you will. Talk to you then.
July 6, 2010: Howdy! Had a routine follow-up with cardiologist today in Savannah. He said I looked good but was still having a "little a/fib." He stopped the Coumadin and started me back on Plavix. He seemed to think this would uncomplicate my life some. I'm glad for the move. Will stop the Folic Acid and the Vitamin D also. Bouncing back from that last chemo on June 16 has been rough; I remain fatigued and eating is not fun anymore, but I'm eating and that's the important thing. Lower legs and feet still a mess. Will see onconologist (S&S) again on the 15th. Looks as though I'll be off the poisons for awhile. Will probably schedule another PET scan at the meeting on the 15th. I pray for a remission and hope you'll continue your prayers.
I will let you know what the docs say on the 15th.
July 15, 2010: Hip, hip, hurrah! Got another month of poison free existence from Doogie today. Blood work was all good and he said if I would get off my arse and begin getting "a little exercise" that I would feel a lot better and quit falling asleep in my plate. No PET scan scheduled. Will do that when I go back in a month on August 18, 2010. No one is ready to say that I am in remission (I guess they'll need a near perfect PET scan before they go out on that limb), but I'm pretty sure in my own mind that I've kicked Big C's butt pretty good. I realize this doesn't mean that he won't bounce back and be all over me again, but there's little to no reason (aside from the statistics) that I cannot be in remission -- and further, a cure in four (4) more years.
Am off the Coumadin, off the Folic Acid, off the Vitamin D and no B12 shots and no chemo! I find all that worthy of celebration and I think I'll read a few books..., and by all means get some exercise.
Some eight (8) of my treatment mates (those that I know or have known for years and with whom I sat in treatment with over this past year) have died. God bless them and their families. But I'm still around for some reason and I hope I can prove worthy of the blessing and good fortune.
And for those who might wonder, the medical profession has billed well over $1 million dollars since my cancer diagnosis, most of that for chemotherapy and the Novalis radiation treatment in Jacksonville's Baptist Cancer Center.
Finally, thank you all for the prayers. And to those who have been pulling for the Reaper, Kiss My Grits!
August 18, 2010: Back to S&S (oncologist) this morning as scheduled to have port flushed and to do the regular blood work. First time since starting treatment that I've ever been called in early. Was a breeze this morning. Blood work looks very good, protein continues to improve (whatever that means). I weigh 217 pounds with clothes on which is way down and is a good thing according to Doogie. I feel a good deal stronger and a little more energized. No SOB, no noticeable cardiac problems. Doogie said he will schedule the PET SCAN in the next day or two and let me know. When the PET report gets back we'll get back together and go over the findings. I'm praying for a remission. Feel free to help me out with that if you're a mind to.
Meanwhile, I pointed out a little brown spot on left neck that is fairly new. Doogie didn't think it looked omnious but suggested I see a Dermatologist and have it removed and biopsied. I'll think on that.
August 23, 2010: Pet Scan appointment set for Thursday, September 2, 2010. Got the makings of a beautiful day in Mama's boudoir: declared remission and the full kick-off of college football season two days later. Could it possibly get any better than that? Keep your fingers crossed and the prayers going!
September 3, 2010: Pet Scan review today with Dr. Singh. News so good it has to be written in red: What "hypermetabolic interstitial" signs, even though there are a couple of new and very faint "modular densities" with measurable SUV values, are thought to be "inflammatory secondary to radiation therapy." The bottom line is Dr. Singh was comfortable enough to call my cancer in REMISSION clinically. Will continue to be followed, of course, and will have another PET SCAN in three (3) months. To see a copy of this PET click HERE.
Here's the official discussion of what REMISSION means: Remission is a term that doctors frequently use with patients and it refers to the response of the cancer to the therapy. A complete remission means that the cancer has completely disappeared with the treatment. Remission does not mean that the patient is cured. A cancer cannot be cured without a remission; however, a remission does not always ensure that the cancer has been totally eliminated. To truly say that a patient is cured of cancer, one has to wait and see if the cancer comes back. The critical difference is time. If a patient remains in remission for a several years, one might say that the cancer is cured.
But REMISSION is what we were after today and this is what we got! Like I said earler, on my 80th birthday to be celebrated on October 13, 2020, we'll definitely call it a cure! Damn, life is good and I am surely blessed. Thank you all who have interceded with prayer on my behalf. They worked and they will continue to work.
