ALL ABOUT ME

Fair warning! This is about me. It may have no universal appeal and or applicability to anybody but me and the limited number of people who harbor some normal or abnormal interest in me. So pause a minute and consider whether you want to waste any more of your time. And then step smartly, onward or backward. Your choice.

Most folks have now heard on the street that I’ve been seeing a number of doctors both here and in Savannah lately This is true! And they’ve been some of the finest medical experiences I’ve ever had. Make no mistake about that. Every doctor and medical professional I’ve seen both here and in Savannah have been highly professional and competent and caring people. This is why I want to interject this here:

My friend from down in Kingsland and I often make jokes in public about our miseries and our visits to the doctors and tell funnies about how popular our Medicare cards have made us. We're just trying to be cute and funny. Gives us some distinction we so sorely lack. But let me make it clear that nothing about these lighthearted moments have ever been said with genuine malice. We do have major problems in the health care field in the United States, but it’s still probably better than anywhere else in the world and my personal sentiments about all those who work in the field can be summed up this way: GOD BLESS THEM EVERYONE! I’ve never encountered but one or two who genuinely didn’t didn’t give a shit about me, and I quickly fired them and moved on to somebody else. Those with whom I’ve been dealing for the past many years are the best. So I wanted to get that out of the way. Excuse the digression.

Now for my abbreviated story.

On March 16, 2009, I went up to see my cardiologist in Savannah to have a nuclear scan and general follow-up. This physician has been following me for many years. I’ve had coronary artery disease (CAD) for years. I had open-heart surgery in 1981. Later I had an abdominal aortic artery (AAA) aneurysm repair and had some ablation surgery to control some atrial fibrillation I was having. Long story short, I got a glowing report from this visit in March and was feeling real good about myself. Came home and was fired up to get into something to keep me more occupied.

So I returned to the YMCA’s health club where I’ve had a grossly under utilized membership for years and started getting back into an exercise routine. Worked myself up pretty good in a short period of time, about 10 days. Then I thought I was ready to go, push it a little harder. Again, feeling good about things, and contemplating living to 100. But I had developed some shortness of breath and was hurting some in the lower back, left hip and left upper thigh. Wrote it off to these insane thoughts about renewing my workouts. You know how bad you are to lie to yourself sometimes!

Then on Sunday, March 26, 2009 I woke up early. It was Sunday. Noticed some severe edema (swelling, fluid retention) in feet and lower legs and was very short of breath. Thought it must be Congestive Heart Failure (CHF), but where would that have come from? Cardiac output had been surprisingly good on the 16th. Then I developed a severe cough and thought I had caught something in that filthy, stinking motel where we had stayed on the trip to Savannah. In point of fact, I'm persuaded I did. It was truly a rotten motel I'm telling you! Subsequent blood tests have confirmed some pulmonary funk described as ‘LEGIONELLA‘? Jesus! Legionaries’ disease? From a motel in Savannah? Could be. But nobody knows for sure.

All I know is the place stunk to high heaven and was unbelievably dirty and gummy and it was ice cold and you couldn't turn off the air conditioner. And on top of that I had abnormal traces of pigeon and bird poop and mixed feathers and cladosporium herb arum and trichoderma viride and other funks in that lab report. And I got the report in case somebody wants to see it!

Anyway, I kept going to the YMCA. I worked pretty hard through April. Lost a bunch of the fluid: from 240 pounds down to 218 pounds. Was committed to healing thyself sort of thing. But things kept getting worse, especially the pain in the left hip and leg. Cough got better, etc., etc. but when the time for my regular appointment came up on May 5, I confessed all my sins to my primary care physician, Dr. Pauline Bellecci, one of the finest of the finest, folks. Believe me. She has confirmed my long held belief that if you’re looking for an ‘offer you can’t refuse’ put a little Sicilian doctor on it! She swung into action after ripping me apart for not calling and coming in earlier. Told her I thought I could heal myself. Said she, “right!” And then placed the severed horse’s head on the gurney with me!

Long story short, the ensuing chest x-ray looked funky. But look, my chest x-rays have looked funky for 7 to 8 years (maybe a decade) and I’ve been through this before. Back in 2002 we chased a funky looking chest x-ray all the way trough a bronchoscope and biopsies. Found nothing. My cardiologist’s brother, a lung specialist in Savannah, followed me for this for about two years and a couple of additional CT scans. Nothing ever changed, so he released me to be followed PRN (as needed). Looked as though it was an old pulmonary infiltrate infection scar or something. It wasn’t changing and “cancer doesn’t just sit around unchanging for several years.”

Well, I needed him again after this recent funky chest x-ray. In fact, we all knew from that earlier time that anytime I had a chest x-ray in the future alarm bells were going to go off! And they did! Nobody was surprised, at least not those who knew my history, but it had to be checked out don’t you know?

Anyway, Dr. Daly has all but gone to specializing in other pulmonary disorders in his practice and left this kind of stuff up to his partners. In fact, he’s traveling from Savannah all over South Georgia now, including Douglas and Waycross doing the sleep apnea thing and bringing a rare service to the folks in these parts. Not many of these specialists around in our area outside of Jacksonville and Savannah, so he’s a godsend for folks with sleep disorders and the like. Anyway, since I was an old patient of his and his brother’s heart patient, but mostly because he holds Dr. Bellecci in such high regard, he agreed to see me and he did, in Douglas on May 12, 2009.

Let’s push this through now. I had another bronchoscope and biopsies. Dr. Daly’s colleague, Dr. Mullins, did it this time, on May 18, 2009 and their pathologist did the slides. Everything looked good except one nasty slide. The pathology on it read: “… malignant tumor cells present consistent with non-small cell carcinoma.” One slide out of seven. One! Damn! All of this brought on more scans: TB check, x-rays, CT scans, bone scans, sputum cultures, MRI, blood work, and more blood work. Later scans revealed a shadow on the L4 vertebrae and the general opinion was and is that this is the source of the hip and leg pain -- something pushing on the nerve endings. This got much better after awhile, incidentally, and has been reduced to a chronic, dull low back pain at the moment, but the chase was on! A PET scan was more than justified now. I had that Tuesday, May 26, 2009. Results came back the next day, today, May 27, 2009. I had meetings with Dr. Daly and Dr. Singh, local oncologist today. (Singh, incidentally, I had seen once already and he is the one who set up the PET scan; and by the way, Dr. Singh made one of the finest first impressions on me of any first time meeting I’ve ever had with a physician in all my life. He told me if a PET scan lights up, it’s bad. If it’s dark, it’s good. I prayed for a “lights out.” It didn’t turn out that way.)

Long story shortened here, but it needs to stop. It’s pretty certain that I have lung cancer. It is probably Stage 4, meaning that it has metastasized, probably to the L4 vertebrae and maybe elsewhere. We’re not absolutely positive yet. There’s a lot of so-called ‘staging’ to do yet. We’re going to get a biopsy of the L4. If it were to not be malignant that would be good news and we would probably just remove the small tumor in the upper lobe of the right lung, count our blessings and call myself lucky. If it is malignant, I’m probably looking at chemotherapy with unknown results. There’s still a lot of mystery hovering around the Big C, folks. And lots and lots of money. God, I wish somebody would find a cure. I’ve lost so many family members and friends to this god-awful disease. And so have you, I’m sure.

Which brings me to my closing, which perhaps represents the universal note, if any, with some applicability to everybody: you are born and then you die -- it is inevitable! We’ll talk more later, I hope! Hey, if Farrah Fawcett can televise her story, can I not write mine? Look for relevant addendums in the right column.

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BLOG PAGE 4: ADDENDUMS 2012

Other Blog pages by year: 2009 • 2010 • 2011 • 2012 • 2013

January 6, 2012: Finally got Pet Scan approved. Will have it done on Jan. 13. Hope somehow I can come off the Tarceva for awhile. Man, that stuff brings on misery, especially late in the day. Seems I'm abe to maintain my weight by drinking at least one Ensure and/or Carnation Instant Breakfast per day.

Turns out my grandson's sister is a perfect match for bone marrow transplant. A little break here and there is very much appreciated. Keep praying for my grandson.

January 16, 2012: Damnit to hell! Pet Scan machine blew up (well, wouldn't work) so I didn't have the scan on the 13th. Rescheduled for this morning. Showed up and went through all the set-up, etc. up to and including get injected with the isotope and the frigging machine blew up again and they sent me home with the assurance they would call me back in this afternoon if they get it to working. I'm not holding my breath. Don't guess I should be surprised. The Pet Scan set up they have here at Satilla is in the back of semi-trailer and they drag the damn thing all around the country. Probably shakes the machine apart going up and down the road.... Eureaka, the phone rang while I was writing this. Pet folks said they were up and running again and for me to come on back and they would scan me. So I'm off again and we'll see what happens!

January 19, 2012: Got the scan done on the 16th, Monday. Had appointment with Doogie on the 18th, yesterday. Scan reports some progression of the cancer. Doogie thinks the Tarceva is no longer working. Wants me to try another protocol: some new poison (chemotherapy) along with Avastin. Am not at ease taking Avastin; lot of potential side effects. But what's a body to do? Will try it and see what happens. Keep your fingers crossed and the prayers going. Will begin Tuesday 1-24-2012.

If you want to read the PET SCAN report click HERE.

January 24, 2012: Got started with the new treatment this morning. Second longest time I've ever spent at the poison mill: 10:30 a. m. until after 3:00 p. m. What's up with that? The "low dose" chemo that I'm getting along with the AVASTIN is TAXOTERE. Doogie doesn't think I will be very sick with it. I've heard that before. Anyway, it's done! Will return in one week to do it again. I think the Cycle is threee (3) weeks on and then off a week. I'm not happy about this. I stopped TAXOTERE in August because it was killing me. Then went on TARCEVA (pill form). Have been puking, etc. since then. Life may be a bitch, but dying ain't no fun either!.

January 31, 2012: Had 2nd round of chemo this morning. Did not get Avastin this time. Am told now that I get that ONLY every 3 to 4 weeks. I didn't know that. Am still full of misery: coughing, incredible fatigue and tiredness, unable to exercise or do much anything physical. Still can't eat very well. Weight down to 169. Got the Super Bowl Sunday but then it's over! May be a lot movies in my future! Grandson having very difficult time with his treatment and I am sick over that. Just don't understand. What purpose does it serve?

Next chemo set for 2-7-2012.

February 9, 2012: Got started on "meals in a bag" today. Providers are bringing enriched nutrients in bag and home health nurses are hooking me up for 16 hour runs beginning about 4 p. m. in the afternoon. Sleeping with contraption and the nurse comes by in the morning about 8:00 a. m. to unhook me. I am officially "home bound" now. Weight went down to 167. I weighed 170.2 this morning. Hope this works and I can get some weight back on and some energy. Seem to be tolerating the new chemo fairly well. Starving to death is the biggest problem now it seems. Cancer indeed does suck! Rotten business all the way around.

February 16, 2012: Finished the TPN (bag meals) this morning; I went for seven (7) days. Seems to have done nothing but compound my miseries. Developed severe shortness of breath right after initiation; kicked my a/fib to new levels. Seems like I've been suffocating for the past week. Gained no weight but haven't lost any more. Could eat nothing but breakfast throughout the TPN. All the misery may have nothing to do with TPN but I'll be hard to convince otherwise. The next few days will tell me something. If I get to feeling better I will NOT consider doing more of it. Go for another round of chemo on Tuesday, 2-21-2012 and will talk with Doogie.

Still subject to debilitating coughing spells. Weigh 169.6 pounds. Blood sugar 127. Heart rate arouind 85. No fever.

Now the news tells me that there is a fairly widespread distribution of counterfeit AVASTIN (one of the drugs in my current treatment protocol.) going on in the country. Makes you sick to think that there are human beings who would pass off worthless cancer treatment to those fighting this disease. Makes me even sicker to think that there are doctors who would buy this shit and pump it into their patients for the sake of a little more profit.

February 29, 2012: Nothing much new today. Went for chemo yesterday and the poisoning and follow-up with Dr. Srivinivasan was fairly quick. I don't seem to be getting any worse. The new protocol may indeed be showing some promise and keeping the cancer at bay. I've even gained a couple of pounds. Misery is still quite abundant though and I continue to live, much to some people's disappointment I am sure. My job now, as I see it, is to hold on until my grandson can get a cure from leukemia. He's having a very difficult time with his treatment and God doesn't seem to be interested in my deal to take me and spare him.

Things don't seem to be improving here in the country, either. The government(s) took about 51% of every dime of income I had for 2011. Something's wrong with that.

March 6, 2012: Went in this morning for 3rd round of chemo in this cycle. Again, took me over 3.5 hours and this was supposed be the "short" version. I'll never understand these delays and resent the hell out of them. Now I have two (2) weeks off. I am happy about that.

Was just thinking: living with cancer is no fun and I sometimes wonder if the alternative might not be better, but I remain confident that the Lord's will will be done regardless of how I feel. That's the truth of the matter! It is what it is!

I do believe I'm doing a little better and that the Big C is being held in check somewhat. Weighed 170 this morning. No big gains but I am able to eat better. The experience is not good like eating should be, but I am at least able to force it down.

I am still reading some and I have recently renewed my genealogal pursuits, but it is really frustrating. Finding anything out for sure about people before the 1800's is a tough research assignment, but the resources on the Internet are expanding and getting better and better all the time. I can say with a reasonable amount of certainity that I am a part of the hordes of Shields folk who were basically run out of Ireland during the Commonwealth Period (damn Oliver Cromwell!) and a great many of them settled in southern Virginia (what is now Pittsylvania County (Danville) formerly Brunswick and Lunenburg counties and pretty much remained in the area. All kinds of distant cousins and/or ancestors fought both in the Revolutionary War and the War for Southern Indepenence. I guess it is safe to say that I am a patriot from way back although I do not know what consolation there is in that. The government(s) are stlll taking over half of all my income and about half of all Americans are not even paying any income tax. That, too, pisses me off. But not as bad as living with cancer!

March 20, 2012: I did not go in for chemo this morning. Here's the deal. Sunday night I had a tooth break off. I had a dental cleaning appointment on Monday so I asked if Dr. Morton could take care of my other problem on this same visit. I contacted the oncologist and asked if he had any objection to putting this new cycle of chemo off for another week so I could get my teeth seen about. No problem, he said. So that's what I'm doing this week. One damn thing after another.

In short, I seem to be holding my own. Still weak, beat down, tired, don't sleep well, short of breath, bad neuropathy in feet and legs, but I am eating better. Can't gain any weight though. Weigh 168.8 lbs. That's a 62 pound weight loss from the high of 230. In some ways I suppose that's good for the old cardiac problems and diabetes. The A/Fib problems seem better although I do get to racing a little sometimes. That's probably because another football season seems so far away. At least I'm thinking about making it through another season. GO GIANTS, 'DOGS, VOLS!

Remain devastated over my grandson who is still hospitalized at Woolfson, Jackshonville with AML Leukemia. He's had a lot of problems. God, what's the purpose in knocking a little kid down like that? Am worried about his mother, my daughter, too. She stays in the room with him at the hospital and sleeps on a window sill. They've been there since just before Christmas!

Got to hang on until he's cured! Pray for us.

March 27, 2012: Resumed chemo this morning. 8:45 a. m. appointment. Got out well well past noon. Had full shot today, including Avastin. Only get the A once every 3 times. I seem to be holding my own; may even be stabilizing some, but it is still no picnic. Where is the Rose Garden? Grandson was found to be in remission and sent home for a few days. Everybody is making haste getting ready for the bone marrow transplant. That will be rough, but thank God a thing or two seems to going right on his front. Thank you, Lord!

I continue to eat, but my mouth stays sore and everything hurts. Eating is no fun much but I have not lost any more weight. In fact, I'm in at 170 this morning. Got to hang on until Chase gets over the hump. Keep those prayers going.

April 3, 2012: Living with cancer is not so remarkable; living with its treatment is the tough part. This morning I made round two of three in this chemo cycle. One more and I'll have a couple of weeks off -- maybe three (3) if I can talk Doogie into it. I really think I'm stable: not getting any worse: Not much better, either, but I'm still standing. Take that all you naysayers! Don't know when next Pet Scan will be. Doctor said my blood work continues to look all right, with a srong hemoglobin showing. I weighed in at a whopping 169. I continue to eat all right but it hurts and is not enjoyable.

Kentucky was favored to beat Kansas by 6.5 the other night in the NAACA Basketball Championship. They won by 8. I didn't bet, but I would have taken the Wildcats. Grandson Chase and his sister continue to prep for his bone marrow transplant. God, I hope this is a great big success. God help him. I believe You will!

April 10, 2012: In and out fairly quickly this morning to comlete this cycle of chemo. Now have two (2) weeks off and begin a new Cycle on the 24th of April. Tried to talk the doc out of three (3) weeks but he didn't go along with it. Blood work continues to "LOOK OKAY". Got a little wheeze, doc says, and suggested I resume the cough syrup at bedtime. I did and I slept a little better last night although I'm still up by 6:00 every morning, it seems, sometimes earlier. Continue to believe I've stabilized and that this present protocol is keeping the C at bay. Doctor says I should be able to get another PET Scan authorized shortly; he'll check it out. Thanks for all your prayers.

April 24, 2012: I had a Pet Scan last Friday, April 20, 2012. Went to see oncologist today as I was scheduled for chemo. Reviewed Pet. Seems "there is overall decrease in the size and hypermatabolic activity of the bilateral pulmonary metasases in comparison to the last study of January 16, 2012." Indicates that present treatment is returning positive results and helping to keep the cancer from spreading. No evidence of new metastases. This is good news and consequently I was able to persuade the doc to give me some more time off from the chemo. Do not have to return until May 8, 2012. Hopefully I can recover some from the beatdown, sore mouth and incredible tiredness. Still cannot eat well. Weighed 169 today.

There continues to be evidence of a "fusiform infrarenal abdominal aortic aneurysm measuging 3.1 x 4.5 cm." I had abdominal aortic aneurysm (AAA) surgery before. Hopefully his doesn't turn into something.

Anyway, I seem to be getting a few licks in on the Big C. That's a good thing, isn't it? Is there another football season in my future? Click these links to read the Pet Scan: Page 1, Page 2.

May 8, 2012: Went in for 1st of 3 chemos in this cycle this morning. Did not get Avastin this time for some reason. Said it would be next week. I've lost more weight. Weigh 165. Blood counts are all okay. Still very short of breath. Dr. Sr. gave me some chalky syrup like stuff for apetitite. Nothing tastes good; mouth continues to remain sore. Treatment is a bitch. But my grandson appears to making progress and that keeps me going. Thanks for your prayers. Next chemo next Tusday, 5-15-2012.

May 15, 2012: I was prompt for my 8:45 a. m. appointment for round 2 of 3 of this chemo cycle this morning. As usual, the doc's office was NOT. Prompt that is! I got out close 1:00 p. m.! Again, had no Avastin this time; got Zometa instead. Was told it didn't matter for so long as I have Avastin in the Cycle. But I have not had the Avastin since March 27, 2012.

Presented my usual complaints: increadible tiredness, shortness of breath. dry skin and blistered feet from very hot bath a week or so ago. Feet and lower legs are numb and I didn't notice how damn hot I had the water. Doc again did not bother to look at feet. Just asked if I was putting the salve on feet and lower legs. Also gave me an antibbiotic, one of those step-down Predizone packages and a Symicort Inhalers. Did I ever tell you that cancer sucks? Seems I've reached the point now where every complaint is met with three or 4 new prescriptions for something. Pretty soon you get a suitcase full of shit and nobody even seems to remember what it's for or even I've ever taken before. I guess trying something in a hopeless situation is better than nothing -- or at least that's what the healthcare provider seems to get to thinkiing after awhile. Again, it all SUCKS! And with that forgive my grumpiness and keep the prayers goiing. Next chemo is Tuesday, 5-22-2012.

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