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June 1, 2009: Have waited since Wednesday when Dr. Singh’s office told me they would be setting up the Brain MRI and spine biopsy. Haven’t heard shit. I would have thought the MRI could have been done last week. Talked with Dr. Bellecci this morning. She suggested I go to Singh’s office and check. I did. Sure enough, Dr. Singh had noted that I was to have the MRI but nobody had bothered to follow through. I should have gone back there last Thursday when I didn’t hear anything Wednesday p. m. after I left his office. That won’t happen again; if you don’t look after yourself nobody else will.
Anyway, I went to Singh’s office and they (Michelle) scheduled the BRAIN MRI for 11:30 a. m. today. Went to Satilla, registered and then to Dr. B’s office to advise her and get some blood work done. BP okay; pulse a fast (for me) 90; Sugar 139 about 90 minutes after breakfast. Moreover, seems I’m “growing something” from the lab work they did the other day: CANDIDA something -- some kind of yeast crap! Dr. Bellecci Rx’d 10 days of FLUCONAZOLE 100MG (for DIFLUCAN). Started it today! Seems to me I have a bunch of pulmonary crap and crud and fibrosis going on, too; may be complicating things, too.
Completed the MRI w/contrast. Dr. B. may have those results late today. Still heard nothing from Dr. Singh’s office as of 5:35 p. m. regarding the biopsy. Office closed at 5 p. m. I’ll find out something about that tomorrow!
6:30 p. m. Brain MRI results are “good”; at least not scary -- appears to be NO brain involvement and no strong reason to believe I have any cancer there although there may be a couple of “spots” that merit watching. The bright spot that appeared on the skull on the PET is described as a “lytic” (basically a hole in the head; we already knew I had those.)
June 2, 2009: Some insistence brought to bear this morning and finally got somebody to move on the biopsy appointment. Will see Dr. R. O'Brien today at 2:30 for review/plan/consult. Will schedule the biopsy at this meeting, I assume; still may have to push it away 2 or 3 days to give me time to get off the Plavix (blood thinner); I suppose Dr. O'Brien will counsel on that. Should have been advised on that last week, in my view, but then I'm not being aggressive enough. I'll get better.
Saw Dr. O'Brien. Biopsy L4 and Baloon Kyphoplasty (cementing the lumbar vertebrae to give stability) to be done at Satilla on Wednesday, June 10.
June 10, 2009: Reported to Satilla Surgical Center at 10:45 a. m. as instructed. The whole experience was great; a well-oiled and precise operation. Say what you want, Satilla is not like it used to be. Everybody, physician to receptionist, are positive, kind, supportive and seem to genuinely care about you. Careful and precise instructions about what is going to happen next and what is happening now are given all along the way. Family is fully accommodated. And there was little to no standing around scratching their butts. They got on with it and got you out of there. Great experience! Folks actually hug you and trade stories about families, etc., etc.
Anyway, Dr. O'Brien said he got ample tissue for the examination and pathologist. The whole pathological process will take about five (5) DAYS and we should have some hard evidence about what we're dealing with. Apparently they will be able to tell not only whether this tumor/lesion is malignant but pinpoint its origin as well (very important in the staging process), what kind of cells, etc., etc. Preliminary expectation is that it came from the lungs. Of course, it could miraculously not be a cancer but something else; that would stand them on their ear, wouldn't it? Ultimately it depends on the many prayers; with HIM all things are possible, and Lord knows there are a lot of folks praying for me and make no mistake: I appreciate that!
Bit of disappointment: Dr. O'Brien did not perform the Kyphoplasty. Said the bone was a too soft and 'mushy' at the site. Downside risk of some bone cement breaking off and migrating here and yonder with serious consequences too great with the bone not being substantial enough to bond solidly. Good thing is I've steadily improved over the past few days in terms of pain and nothing to suggest I won't continue to do that. People get along fine sometimes with compression fractures. I shall be one of those! And the possibility of radiation knocking the L4 tumor on it's ass remains a possibility. We'll see.
Thanks to Dr. Bellecci Satilla Pathologist Keath Wade, M. D. has my slides from Candler when they did the bronch and spotted the first suspicious cells; he has been fully briefed on my case and will give his undivided attention to comparing the two when the back biopsy slides are ready. (Dr. Wade is a graduate of the University of Tennessee. I just learned that and you know that's got to bode well for this old Volunteer! Man, that's great! Things are shaping up.)
To see Dr. Singh (oncologist) on Tuesday at 11:30 a. m. Continuing to research second opinion services and reading like crazy. Did you know that folks on average get cancer about six (6) times in their lifetimes and their immune system kills it off? All too often though, the cancer, whose cells grow geometrically, get a foothold and beat your defenses and that's when we seek intervention from medicine. Can be little doubt that what we eat and other environmental factors have much to do with the life and death of cancer. Keep your immune system strong and healthy and ready to march; that is the key, it seems. One thing seems certain: it ain't George Bush's fault!
People keep asking with their eyes: "Are you frightened?"
Answer: You damn right! But strangely, not of dying! This is the truth. What frightens me is the same thing that frightens me when I face down a bully. The prospect of losing and him causing you a lot pain and suffering. That frightens me, pain and suffering. But I will not run from the son-of-a-bitch!
June 16, 2009: Met with Dr. Singh today. He said he had pathologist report although I did not see it. I need to get me a copy of it along with Dr. O'Brien's operative note. I'll work on that. Still some stain work to do on the biopsy.
Anyway, Dr. Singh confirms that the tumor in the spine is malignant. He's persuaded it came from the lung and is 80% sure that it is NSCLC (non small cell lung carcinoma). He also said the biopsies showed that my immune system is hard at work on the cancer cells and agreed that was the best line of defense. I need to muster the NK's (natural killer cells in the immune system and I will try my best to do that). Chemotherapy seems to be the preferred treatment and should be started as soon as I'm comfortable with it. Radiation would come if I get in intolerable pain, etc., etc. He wants a surgeon to implant a port or something in my chest to facilitate the treatment. Wanted to know if I had a preferred surgeon; told him they were all dead. Anybody got any recommendations?
Dr. Singh is going to package up the record(s) and slides and send them and me down to Mayo for a sit-down and a second opinion; I sort of insisted that we do that. He seems amenable and said he would see about it promptly. I suppose Mayo is all right? I have some physician friends strongly encouraging a review by one of the cancer focused centers like Sloan Kettering in New York and/or M. D. Anderson in Houston to make sure I have the newest and best chemotherapy protocol recommendations.
He's also going to look into this Novalis shaped beam radiosurgery that they do at Mt. Sinai, New York. I delivered to him some literature and contact and referral information. I don't know if I'm a candidate for that, but the literature seems to suggest that they've had some success with the procedure on spinal tumors. We'll see what he finds out.
I understand perfectly the recommendation for chemotherapy; it is definitely a Stage IV cancer and the earlier we see what treatment accomplishes the better off we'll be. In fact, a prognosis with any kind of reliability can only be given after a round of treatment, right?
Waiting for the next appointment. Waiting is a bitch!
June 18, 2009: Dr. Singh called. He has talked to the folks at Mt. Sinai regarding the shaped beam radio surgery. Not much different than the gamma knife and focused radiation services available in Jacksonville and Brunswick it seems. Bottom line: defer radiation unless and if the pain in back becomes a problem. Begin chemotherapy is the strongest recommendation.
Appointment with Dr. Elizabeth Johnson, Mayo, tomorrow at 12 noon; report to Davis Building at Mayo at 11:00 a. m. for registration: 1st floor; then 8th floor to Dr. Johnson. Mayo Address: 4500 San Pablo Road, Jacksonville, FL 32224. Bring all slides, scan discs, etc. Picked those up at Satilla from Dr. Wade and X-Ray Department a little while ago.
Meanwhile, I have appointment with Dr. Thomas Wehmann, local vascular surgeon, on Monday, June 22, 2009 at 9:00 a. m. at the Satilla Surgical Complex at 1908 Alice Street. Telephone: 338-6010. This regarding inserting the port to facilitate the chemotherapy.
Appointment with Dr. Singh on Monday also at 4:00 p. m.
Have appointment with Dr. Bellecci today, 2:00 p. m. to begin work on the nutritional aspects of a fully integrated approach to fighting this thing that has invaded my body. Things are jumping now. All my doctors have been great and uncommonly attentive (well, save one, but even he seems to be highly competent and served me well; who gives a crap what his personality lacks?)! How will I keep up with all these appointments? Never fear, I can do it! Am anxious to see what Dr. Johnson has to say about the most appropriate chemotherapy protocol(s).
4:15 P. M. Dr. Bellecci conducted a hour long personal seminar for the wife and me on the nutritional changes we must make to make the coming chemotherapy more tolerable and to help fight the cancer. I've read an awfully lot about some of the things she talked about; I'm sold, especially on anything that will improve my immune system and produce as hostile an enviornment as possible for cancer. We're coming after you, Big C. "And hell is coming with me!"
June 19, 2009: Kept my appointment with Dr. Johnson at the Mayo Clinic, Jacksonville today. Clinic operation is impressive to be sure, but it is obviously a place for “rich people.” They look down their noses, it seems, on people whose primary coverage is Medicare. In fact, they made sure I had several brochures and booklets making it clear they do NOT accept Medicare -- in other words, they don’t let the government tell them what they can charge. They do go out of their way, however, to give you what you need to recover what you can from Medicare, but they made sure I understood that I had to pay whatever they charged. Then they had to gall to try and recruit me for a clinical trial -- they wanted to study me, at my cost, of course, with the full understanding that I might be helped and I might not. No thanks! Don’t think I can afford those folks. I have an oncologist friend up in Tennessee who had warned me that that’s what they would do, so it didn’t come as any great surprise. Man, there’s big money in this Cancer game all over the country; no doubt about that.
Anyway, Dr. Johnson was jam-up. My kinda woman. She studied my record with me and spent a good deal of time going through everything. She seems to think I have been studied appropriately and thoroughly and concurred the staging was complete enough to get started on treatment. She recommended a couple of protocols and they are consistent with what is being recommended locally and with other specialty input I’ve gotten from friends and acquaintances in the field. So I’m off to see Dr. Wehmann on Monday about getting the port put in and I guess my first taste of the poison is not far away. I’m working on the immune system, trying to get it jacked up to help out. So start your engines, Big C. I’m coming after your ass directly!
June 22, 2009: Reported for my appointment with Dr. Thomas Wehmann this morning. Smooth and efficient operation and I like Dr. Wehmann very much. No nonsense, quick and to the point kind of guy who gives you plenty of opportunity to ask questions. He set me up to have the port inserted at the hospital on Thursday, June 25, 2009. Exact time to be determined as soon as the scheduling for that day is complete. Will pre-register and meet with anesthetist folks on Wednesday at 3:30 p. m.; get surgery schedule at that time I think. Will probably go with single lumen port although my oncologist friend in Tennessee had suggested a double lumen. Dr. Wehmann said he would do either, but pointed out that the double’s entry point is a little smaller and tended to clog more frequently. Dr. Wehmann asked me to talk with Dr. Singh about that and let him know if we wanted a double. Think I’ll go with what the locals here recommend and are accustomed to working with.
To pick up “pee-kit” from Dr. Bellecci’s office Tuesday at 11:45 a. m. She’ll send the specimen to a specialty lab to ID areas of toxicity and help guide the nutritional aspects of my treatment program. High hopes we can mitigate some of the side effects of chemo and begin the immune system booster plan(s).
Will see Dr. Singh this afternoon at 4:00 p. m. I expect him to review the report/recommendations from the Mayo Clinic with me; hope also to get a definite chemo-combination recommendation.
I really feel good today (save some back discomfort still but nothing like the severe pain I was experiencing in April and last month) and cannot help wondering why any sane person would deliberately permit folks (and even pay them obscene sums of money) to pump poisons into him to make him feel like crap! But then if you don’t take the medical advice that you seek out and pay for, what’s the purpose of going to see them in first place? I’m in for better or worse, no disrespect to the scads of unsolicited advice that I’m getting to the contrary. If God can help me without the treatment can He not also help me with it? Yes He can! The eclectic/integrative approach makes the most sense to me: try everything not strongly contraindicated by sound medical opinion. How can you go wrong with that?
4:00 P. M.: Appointment with Dr. Singh this afternoon was detailed and informative. Do not know how the man keeps his demeanor with such a large caseload of desperate people. He spent better than an hour with me, wife and oldest son going over the chemotherapy, what to expect and so on. He has several other physicians following my case along with him and he tried to get Dr. Johnson from Mayo on the telephone; no written report from them had arrived. Couldn’t raise Dr. Johnson; said he would try later. Is setting me up an appointment with a Dr. Jamieson, a radiology oncologist for Friday to review my scans of the back in case we get some positive results with the chemo and an attempt at radiating the L4 tumor becomes feasible later. They will call with appointment time sometime tomorrow. Chemotherapy will begin Monday at 9:30 a. m.
Day's closing note: hell of lot of local people have cancer. It was like old home week in Dr. Singh’s office this afternoon. Saw many neighbors and friends there, many of whom I didn’t even know had cancer. Won’t name them for that’s their business and not mine, but they all said they were sorry I was joining their “Club.” I told them it was comforting to be amongst them and being reminded that I’m not alone in this challenge.
June 23, 2009: Went in to pick up my 'pee-kit' from Dr. Bellecci's office. Kim and Dr. B instructed me and even gave me a book that Dr. Bellecci had bought for me. The woman is incredible! It's not just me that she looks after this way mind you: she risks life and limb to save wayward turtles, too. And I have no doubt that this nutrition stuff is going to be enormously helpful.
Picked up my imaging studies at the hospital today to have for Dr. Jamieson's consult, hopefully on Friday. Talked with Dr. Keath Wade again this afternoon. I'm telling you, folks, this Satilla Operation is quite impressive. I haven't had many dealings with them until recently, but things are different there now. Professional, efficient, caring, confidence engendering and personable, at least in the departments I've been dealing with for the past few weeks. Somebody is doing something right at that place now!
June 24, 2009: Reported to hospital this morning at 7:00 a. m. “Why don’t we start early,” I said to somebody at check-in. “Hey, you aren’t even the first,” she said. After talking with Dr. Wehmann I think I understand why. He’s from Ohio, has a son at Ohio State. He almost took a job at Greenbrier Hospital in West Virginia where my wife and I are from. He knew where Ronceverte and Alderson were and had been there. In fact, said he almost moved to Sinks Grove. Can you believe that? There’s some good karma going on here. Dr. Wade, the pathologist, a Tennessee graduate. Dr. Wehmann Ohio University but a wife from Morgantown, WV. Not surprising this guy gets started early and is so efficient and good at what he does: boy’s got Mountaineer blood in him! Or at least he's sleeping with it. Anyway, I drew practically the same team as I had the other day for the biopsy: Carol Hull and Leah Dean, nurses, Thawanna Taylor, CNA, Jeaneler Bennett and Susan Sloan in Recovery. Had Dr. Johnson for anesthesia this time. Although he’s been to several med schools, including UAB in Alabama, he got his undergraduate degree from the Citadel. We chewed the fat for a good while before I went in to get my port implanted. He was a really nice guy, and you got to trust a guy who went to the Citadel.
In short, getting the port was a piece of cake and the Satilla operation continues to impress me. It’s a new day at that place and I think if I need medical care in the future I will choose to stay in town. Besides, I’m a frigging major stockholder now! Bottom line: we’ve got it teed up now. Kick-off is Monday. Me. vs. the Big C. Brace yourself, Bubba; I intend to kick your ass!
June 25, 2009: Very informative meeting with Dr. Timothy Jamieson, radiology oncologist out of St. Simons/Brunswick today; he is just beginning to come to Waycross and is setting up shop at 2101 Tebeau St., Waycross. (Check him out HERE.) Said they would be coming over “on Tuesdays”. They are using the old “Renue Plastic Surgery Building” on Tebeau. We reviewed my case and he looked at all the imaging I brought in. He reviewed thoroughly the role of radiation in cancer treatment. Bottom line in my case: I am showing very few symptoms such as back pain and shooting pain down the legs, no severe coughs, headaches, etc. at the moment. Dr. Jamieson concurs with the plan to begin chemotherapy and bring radiation into the mix should I begin to develop more symptoms, etc. Hopefully I’ll get some positive results from the chemotherapy. Anyway, he agreed to be “on the team” now and will follow me along and stands ready to help. That is a good thing. I like him a lot. Another guy who speaks directly to you and honestly about the situation presented to him. Plus he went to medical school at Virginia and did his residency at Duke. Basically another old hometown boy on the team. That's got to be a good thing!
8:35 p. m.: Should have known things had been going too smoothy to hold up. I was at the "famous" Mayo Clinic in Jacksonville last Friday, June 19, 2009 to consult with Dr. Elizabeth Johnson. She was nice enough when talking to me but I wonder if she has given me another thought after I left. They made damn certain that I understood they don't take Medicare and that they would charge what they want to and I could recover what I could on my own from Medicare and insurance. Moreover, she spent some time testing my interest in a clinical trial they were running, at my expense, of course. She also promised to have a report with her recommendations back shortly, including a promise to have her Pathology folks to look at my slides I had taken to her to see if they concurred with the findings here. Probably wouldn't cost more than a few hundred dollars at most she assured. She even went so far as to give me a number (904-953-7290 'press #2 on the menu,' she said) and asked me to call them if I had heard nothing in a week. Today! Fair enough. Having heard diddley shit from them, I called today. Got some bimbo on the 'phone in that department who wouldn't let me talk with anybody in charge who might answer my question(s). Said she would have Dr. Johnson call me. I waited all afternoon by the 'phone. Nothing! I bet their bill is prompt enough! Good luck in collecting anything if you don't get those reports back to me!
June 29, 2009: Girl named Jennifer from Dr. Johnson’s office at Mayo called this morning; said Dr. Johnson had told her to call and give me the reports I was seeking. Asked if she would send me written copies of both the pathology and Dr. Jonson’s report -- also told her that Dr. Wade in Waycross had already received the path report confirming the findings here and I would get that in time, but asked her to send the two reports to me anyway as they had promised. Said she would. (These two reports did arrive two days later.)
Now for the 1st Chemo treatment. Liar, liar, pants on fire comes to mind! They told me it would take about 2.5 hours. Reported promptly for the appointment at 9:30 a. m. Office run over with patients. Slap full and still coming in. Didn’t get called in until 10:35 a. m. Blood work, affixed IV to port and met with Dr. Singh. He reviewed everything with me again and they put me in a room where he could watch me as he walked by from room to room, which he did. First, they gave me a bunch of pre-chemo meds, anti-nausea stuff, steroids, Benadyrl, Tagamet, etc. Then they gave me the poisons: Carboplatin and Taxol, and threw in some Zometa, I think. Don’t hold me to the spellings of these drugs. Anyway, folks, 2.5 hours was one of the most gross underestimations I’ve ever encountered. Wonder if this is just a little white lie they tell to keep folks from running? No big deal; what else did I have to do? Anyway, I didn’t leave until 5:15 p. m. Honest! 7 hours & 45 minutes. Now that’s a long time to sit just twiddling your thumbs! I’m taking a picnic basket and a cooler and a couple of books next time; I asked if the office had a wireless Internet connection. Girl said she didn’t know. Anybody know? I was ill prepared, but there is some goods news.
So far so good. The chemotherapy, in my case, has so far been a piece of cake. Am not sick. Do not feel bad. Have had no nausea, no headaches, nothing I was expecting. At least not yet. I can stand that, no matter how long it took. Came home and ate like a horse -- including a bunch of fruits and oatmeal and stuff Dr. Bellecci has come up with. Have asked for a “slow day” next week. I do this once per week for three weeks; that constitutes a cycle, as I understand it. After that, again as I understand it, they reassess and see if anything has been accomplished and make any necessary adjustments.
Final note: just as the sun was setting and I was finishing up the first treatment and fixing to ride off into the sunset, a girl came in and read two pages of “consent for chemotherapy”, word for word, which said I might die from it, that it might not help me anyway, probably wouldn’t cure me, and that I could quit anytime I wanted and so forth and so on. They really don’t know who they’re dealing with! Anyway, I signed and asked for a copy of it when the Dr. signed it. I intend to frame it and have it prominently displayed in front of my 80th birthday cake!
July 1, 2009: Things still good. Had a little anginal pain last night right in the middle of "Saving Grace", but that's not unusual for me; I have it infrequently for no apparent reason (remember, I have CAD disease with heart by-pass in 1981) and there is no reason to believe it is related to the chemo; besides, a nitro under the tongue and it went away almost immediately. Nevertheless I advised Dr. Bellecci and will mention it to Dr. Singh next week. Back feels better than it has felt in a couple of months. Run Big C, you loathsome bastard. Run for you're life!
July 2, 2009: Well, I was going off tackle and a Big C linebacker stuffed me and knocked the ball loose. It was a jolt coming from a sissy and all. But I just wasn’t holding the ball properly, I guess. I shouldn't have dropped it. Went in for an EKG this afternoon following the episode of angina mentioned above. Seems I’ve gone into Atrial Fibrillation again. Heart rate is not too rapid; today’s EKG heart rate was 93. I generally run between 65 and 75. Feel fine, but Dr. Bellecci says I’m definitely fibrillating. She talked with Dr. Singh. Seems Taxol, one of the two chemicals comprising my chemotherapy, is notorious for kicking off the A/Fib, especially in folks like me who might be predisposed to it. I’ve had it in the past but haven’t been bothered with it in a long time. But it’s back. The doctors have put me on Coumadin (I don’t know for how long). I have to have six (6) shots of Lovenox (whatever that is!) 12 hours apart as I begin the Coumadin; they gave me the first shot at Convenient Care this afternoon and Dr. Akram’s nurse taught me how to give the remaining five shots to myself. That should be fun! I’ve never given myself nor anybody else an injection in my life, but it looks simple enough. I’ll get it done. Wife says she will do it. Don’t believe I want her to have to get up at 5 a. m. and do that; I’ll try to handle it myself! The wife is grumpy if she has to get up early! Call me needle man!
July 3, 2009: First self-administered injection of Lovenox this morning at 5:00 a. m. Cakewalk. No problem! Get a lab check Sunday at hospital; see Dr. Singh on Monday. God Bless America! God bless our troops! No incumbent re-elected to Congress; strigent term limits now!
July 6, 2009: Got through the Lovenox injections with nothing but a belly full of bruise dots and had my lab at Satilla Sunday morning: (PT INR = The PT/INR is a test to determine the clotting tendency (coagulation) of blood and is most commonly used in monitoring the accuracy of blood thinning products such as warfarin (Coumadin, actually rat poison!). Went to Dr. Singh’s office this morning as instructed; he wasn’t there. The girls assumed I was there for my second treatment. NOT! I’m scheduled for that on Wednesday. Took awhile but I finally got everybody on the same page and I saw Dr. Singh’s associate, Dr. Srinivasan. He spoke with Dr. Bellecci who had yesterday’s PT/INR results. Am still a little out of line so I have to give myself four (4) more shots of Lovenox. Whoopee! Poor belly! Also to increase the Coumadin to 7.5 MG (one pill and one half). Will go back in on Wednesday and get another PT/INR and have second chemo unless there are contraindications. Continue to escape real serious side effects of chemo. Praise the Lord!
July 8, 2009: Second chemotherapy under the belt. Appointment was 9:30 a. m. Got right on in and set up and was on the way home 4 hours later. Great! I deserve it! Spoke with both Dr. Srinvasan and Dr. Singh. Got some clarification on some things. Both docs downplayed the correlation I had drawn about Taxol above and Artial Fibrillation (a/fib); they told me they doubted seriously one had anything to do with the other. They don’t deny the possibility but they doubt it and besides, they said, “they don’t want to go away from Taxol” just yet. Bad news: I’ll probably be on Coumadin throughout the chemo at least and “maybe for life.” Like Scarlett said, ‘I’ll think about that tomorrow.’ When cancer tucks its tail and runs -- and it will, mind you; the forces aligning against the demon will be too much for it to handle and it will in time cut and run. -- and the a/fib is still there, we’ll turn our attention to it and get my rhythm back. I know a little guy up in Savannah who knows his stuff with that radio beam ablation therapy. He has no personality but he knows his a/fib stuff and I bet he can restore the rhythm. So the idea is to get the anticoagulant aspect of my blood at the proper level and continue kicking the Big C’s butt. More bad news: after four more shots of Lovenox I’m still out of line and I have to continue the self-mutilation today and tomorrow (my God, nobody is going to want to kiss my belly after I get through sticking it full of holes) and re-check the Pt/Inr Friday. Also to kick up the Coumadin to 10MG (2.5 mgs above the standard dosage). So pass the needle, I’m still shooting myself. Poor, poor belly!
Oh, final note. Doogie (Dr. Sri; damn he looks like he’s 12 years old and so I’ve named him Doogie Howser) must know something: he gave me a prescription for Zofran (anti-nausea) drug (“just in case”) along with an ample supply of Lovenox syringes. That’s just great! Now I’ll sit around all week waiting to puke and pining away over my cute belly!
July 10, 2009: Good news! The Big Ugly has turned it over, turning his brief advantage into nothing but a speed bump. I’ve got the ball back and starting another drive! PT/INR check this morning at Dr. Singh’s office shows the anticoagulant levels have finally reached the desired levels. Doc says no more belly shots! Cut back the Coumadin to normal dosage, 7.5 MG’s. No serious side effects yet from 2nd chemo treatment on Wednesday (knock on wood). Back is sore and weak and hampers sudden moves and twists and that’s likely to be with me for awhile. The damage to the L4 vertebrae is real and lasting, but what’s a little low back pain? I can deal with that. Looking at the calendar: I have nothing scheduled now except next week’s 3rd chemo, which will complete Cycle 1. Feels like a milestone!
July 15, 2009: It was nice not having to make daily doctor appointments, getting scanned, stuck, punctured and beat around for the past week. Went in for my 3rd Chemo this morning. Blood counts and other tests all good. PT/INR (damn that stick in the finger is getting old. Ouch!) showed my blood a little too thin so the doc cut the Coumadin back to the standard dose, 5MG. Anyway this completes the first cycle of chemotherapy. I have a week off now (only a WBC check next Wednesday) and then I begin Cycle 2. (A cycle in my case is one treatment per week for three weeks of Chemo) and then probably another week off and then Cycle 3. That will take me into September and football season will be underway. (I got to get some bottle caps (money) down to the Jamaican; I don’t want to miss out on this season. I really think the poisons I’ve been taking may give me some insight and I fully intend to skin the cat this year. The typical gambler’s delusion, right? We’ll see!… I already bought my Booster Club Membership to support the local high school. I‘ll be buying the same season tickets shortly.) I’ll probably have a PET scan at the end of Cycle 3. I think it will show that we’ve scored some points and may even have the lead in this game, but I know better than most not to get all cocky just because you have the lead at the end of the first quarter. Formidable foes will kick your ass late if you let up, and Big C is plenty formidable -- but that’s not the important thing. The important thing is he can be beaten, and he’s done jumped on the wrong dude. That’s my story and I’m sticking to it. I’ve got a few plays for the second half that will blow the dude’s mind and maybe give us a cheap one or two.
By way of summary, I have truly been blessed here early in this game. I have had none of the more serious side effects of chemotherapy that I’ve seen others have and heard about and read about. No violent and persistent nausea. No weight loss. Have in, fact, been gaining weight. Even the health care folks are looking a little puzzled. I have not lost my hair. Appetite remains reasonably good, although some food doesn’t taste as good as it once did.
Downside: I haven’t been exercising like I should; I’m a little wimpy about my back. I need to man up and get to walking, etc. The back has continued to be a little painful and weak and there is some occasional pain down the left leg with late afternoon edema in the left ankle and foot and I’ve let that become my Achilles heel. Looking for an excuse for not doing what I don’t really want to do in the first place, I’m thinking, but I’m going to try and get it on a little during this week off. And finally, sleep is fitful. I get up and down all night, not every night, but often and then I sometimes fall into this incredible fatigue where I almost fall asleep in my tracks. If and when I get a lot of sleep and rest this problem seems to diminish, so I feel in control of that. I like feeling in control, of course.
I remain for the most part positive and upbeat for I know beyond any shadow of a doubt how important this is. You must believe for it to happen. This is true with anything you're confronted with, especially the tough ones. I also am absolutely persuaded that the many prayers friends, family and others are saying for me are contributing greatly and I cannot begin to express a fair measure of gratitude to these people for that. I’ve had so many cards and letters and acts of kindness for which I’m very, very grateful. I cannot thank them adequately.... It will be a long game. I know that. But I will stay the course and I will be a force in the fourth quarter. A Reckoning is coming, Big C. Go ahead and check out now if you want. Or wait around for the final stanza if you like, but be prepared to drag your mangled and defeated and humiliated ass to the showers then. Your choice!
July 20, 2009: Still trucking along and doing well under the circumstances. Having cancer and submitting to chemotherapy is no picnic, but as I’ve reported in my case, it hasn’t been as harsh and as debilitating as some suffer through. Again, I’m really surprised at the number of people who have cancer -- friends of mine and acquaintances here -- and I truly have an entirely different perspective on this insidious disease and the devastating effect it has on people and their families. Isn’t that always the case? You take your health for granted it seems. I don’t have the words to express the sorrow I feel for them. May God continue to bless us all with whatever blessing He’s a mind to deliver.
As for me, I went in to see Dr. Bellecci today. I didn’t do too well with my walking this past week. I went up to the YMCA track the other day and walked a little. The back did not do well so Dr. B. wanted me to try a Lidoderm back patch. You wear it up to 12 hours a day and the idea is to numb up a sensitive area long enough to be a little more active. I wore it most of the day. Didn’t help anything. I’m just going to have to push through the discomfort and get the old body a little exercise the best I can. The back problem is making me an old man long before my time. I’m walking around gingerly, guarded, slowly, carefully and I’m sure to others I appear as though I might stumble and fall any minute. Not a good thing!
I am also constipated most of the time now. Picked up a few ideas on dealing with that from Dr. Bellecci and will be eating a little Activia here shortly. If that doesn’t work, will move on to some harsher remedies. Go in tomorrow for blood work. Will begin Cycle 2 chemo next week. It’s been a tough summer, but it could have been a whole lot worse.
July 22, 2009: Blood check this morning at Dr. Singh’s office. I never see Singh any more, but his cohort, Doogie Howser (Dr. Srinivasan) fills in. Anyway, blood not quite thin enough, again, so a slight adjustment to the Coumadin is in order. Consequently, I got a taste of Obama’s coming healthcare madness. Here’s the deal. If you’ve read this blog up above, you know that I went through a series of Lovenox self-injections in preparation for the regimen of Coumadin. Along the way, I had to adjust the Coumadin up and down, e. g. 5MG to 7.5MG to 10MG and then back down to 7.5MG and then 5MG. As instructed I was cutting the Coumadin tablets in half to reach the prescribed dosage(s). Naturally, this used up the Coumadin 5MG tablets and when I went to refill the prescription the pharmacy refused to fill it. Well, actually, my “great” UnitedHealth Care and CCRx Medicare D insurance plans refused to pay, and nothing could make them. They only allow so many pills per 30 days and they don’t give a shit what your explanation is, just like Obama’s rationing system is going to be like if and when he gets it implemented. Only worse! Anyway, I explained all this to Dr. Srinivasan and he scratched his head and came up with an idea: he wrote two (2) new prescriptions: one for Coumadin 5MG and one for Coumadin 1MG, figuring we would be able to make the necessary adjustments using the 1’s. For example, I’m to take 6MG of the Coumadin for a week and see if that brings my levels to the desired end. So back to the pharmacy: You got it, we ain’t filling the 5MG until the required time has expired on the other prescription. That will be probably Friday or Saturday. It matters not to these insurance thieves that you’re not supposed to just stop taking the Coumadin cold turkey and that you run the risk of having to start all over with the Lovenox injections, etc. to get regulated. This is just a small example of what Obama and the frigging army of Csars have in mind for the American public. I hate them all: politicians, healthcare providers, drug companies, insurance companies, etc. I know, that’s a little harsh, but it’s frustrating. I mean, give me a break: just because I’m old doesn’t mean I don’t want to live and be valued as a human being just like everybody else.
Anyway, I got it worked out, but believe me it won’t be long before it’ll be impossible absent a pile of money in your pocket. Next chemo treatment is next week.
July 29, 2009: Went in this morning for chemo: 1st treatment of 3 for Cycle 2 under the belt. Right at 4 hours, a little shorter than expected since the Zometa was added this time. I get Zometa once per month, or put another way, in the first treatment of a new Cycle. Blood counts are holding. PRT dipped to 1.5 from 1.8 last week, defying “all logic” according to the doctor. In other words, after the 1.8 reading the doc upped the Coumadin to 6MG and the reading still fell. We want the PRT to be between 2 and 3. Am to kick up the Coumadin to 7MG for a couple of days and then drop it to 6MG for a couple days and then back to 7MG and will see what that does next week when I report for Chemo 2 of 3 in Cycle 2.
Developed a terrible rash on hands and arms (no where else on body) last week but it seems to be fading after looking like a bad case of leprosy when it first showed up. My best guess is that it’s Actinic Purpura (maybe Keratosis mixed in), a condition associated with prolonged exposure to the sun and more prominent in individuals over 40 and especially in fair-skinned people. The condition is exacerbated by the blood thinner Coumadin and it certainly ravaged my hands and arms last week. The doctors don’t seem to be real sure exactly what it is and have done very little to find out. They do allow that it could have been set off by the Taxol, one of the chemicals in my chemo cocktail, and probably helped along by the blood thinner. Anyway, if in fact the chemo rushed to the lesions, which could be precancerous skin disorders, maybe that’s a good thing and we can get rid of that, too! Why not? Anyway, it looks a lot better and the docs say let’s just watch it. That seems reasonable to me. Still, nothing, it seems, is going to get in the way of keeping on with chemotherapy; I understand that, I think.
Other than the rash, I continue to be subject to extreme fatigue at times and tend to just fall asleep sitting around sometimes. I also have some significant edema, swelling of lower ankles and feet, especially by bed time. Again, doesn’t seem to concern the doctors. Full steam ahead with the chemo. So be it! No nausea, no hair loss, no weight loss so far, no sharp pains in back and legs.
Tallying up a little: health care providers have billed just under $80,000.00 diagnosing and treating my cancer so far. The first chemotherapy bill, for example, was $7,538.00. That’s one treatment! The second was a little less because it didn’t include the Zometa, which was billed at $2,300.00 by itself. I’m just one, insignificant cancer patient in America where there are hundreds of thousands more. The providers will not collect from Medicare and health insurance what they’ve billed, of course, but $80,000 is what they have billed. Thank you. Lord, for letting me have access to some kind of treatment. Are we in a health care crisis in America? You tell me.
August 5, 2009: Shakespeare wrote, “Misery acquaints a man with strange bedfellows.“ I say misery sustained wears your ass out and makes it difficult to keep a smile on your face and tends you toward your darker side and often makes you an asshole I reckon. The ‘strangeness’ of those bedfellows is in the eye of the beholder I also reckon. I’m full of clichés today. The point is I haven’t been doing well this week with my attitude. I’m short tempered and have a tendency to say hateful things. I got to get all this back under control and learn again to accept what I cannot change.
Went for chemo this morning (2nd round of Cycle 2). Was over an hour getting started (had an 8:30 a. m. appointment) but was delayed getting in for the blood work, meeting with the doctor and then set around way too long to get started with the four-hour poison drips. Tended to piss me off, for some reason; had no call to get pissed off, but I did. Anyway, I didn’t say anything. That’s a plus, but the girls recognized my little trip to the pity party pit I suppose; they asked how my weekend was and if everything was all right. Bless their hearts!
Anyway, all the blood counts are good except the PRN. Blood still not thin enough. Doogie said to jack up the Coumadin to 7MG every day and we’ll check it again next week. And that pissed me off.
Saw Dr. Singh later on. He was his usual cheerful self. I told him I was damn near 240 pounds now (with my clothes on, of course) and my feet looked like two hog hams stuffed into my shoes they were so full of fluid. He made me feel better with his infectious smile and good humor and then prescribed a 10MG diuretic. Went to the pharmacy early afternoon when I got through with the chemo and dropped off the prescription. Went to the bank and post office and ran a couple of other errands and then returned to pharmacy. When I got home and inspected the medicine (always, always inspect your medicine against what your prescription said and your understanding of what you’re supposed to be doing with the drug) and noticed they had dispensed a 20MG. I called Dr. Singh who verified that he wrote a Rx for 10MG; then I called the Pharmacy to ask what was what and they said “they” didn’t make a 10MG and that I was to cut the pill in half. Of course, nobody bothered to tell me that, figuring I would read the label on the pill bottle I reckon. Are they frigging nuts? Read the directions? In my state of mind I’m surprised I just didn’t take the 20’s from now on. And, of course, that pissed me off.
Then I went home only to learn the Culligan people didn’t come to either take out their shit or bring me new water as they promised, AGAIN! These people have become impossible to deal with. Shall I say it again. Yes, that pissed me off! And then I snapped at my wife who wanted me to go get my car which has been in the shop for two days while they get a motor for my window. This Toyota Highlander I have has done nothing but piss me off for the several years I’ve owned it. Again, I have no reason to be pissed off, but I find myself staying that way and I’ve got to get better. I can feel the Big C laughing at my weakness.
Anyway, I’ll finish Cycle 2 next week and then take a week off I reckon. That doesn’t piss me off!
August 10, 2009: I think I mentioned earlier having been somewhat surprised at the number of friends and acquaintances with cancer that I’ve run into at the doctor’s office. May have even alluded to the brand new bond that was created with them, sitting there together in the waiting room or in the treatment room(s), sharing the poison drips and the same desperation and hope of winning the game we’re all in with this monster. Two of those friends, Amy Herrin and Bill Westhead, died last week. I won’t be seeing them anymore at the doctor’s office. That makes me very sad, but it doesn’t diminish my resolve. I’ll report and complete Cycle 2 of my chemotherapy this week.
August 12, 2009: Completed Cycle 2 of chemo this morning. Had 8:00 a. m. appointment. Was prompt. In fact, I was the second patient in the door this morning. Never mind that. Was still 25 minutes late getting in for the customary blood work and vitals. Best I can tell nothing was going on except indifference on the staff’s part to account for the delay. Why does this irritate me so much? I certainly have nothing else to do, but I can’ t help it. Look, how can you put a hell of a lot faith and trust in a medical practice that cannot organize well enough to see their patients on time? Give me a break: my chemo treatments take about 4 hours once they begin and they bill close to $8,000 for each. If the staff takes an hour to an hour and a half getting started you’re in there for 5 to 6 hours and more. Something doesn’t seem right about that.
Don’t get me wrong, I’m really satisfied with the actual medical care I'm getting. After all I check it out with every expert to whom I have access and there are several. And really the staff, while a little sloppy and indifferent at times, are very good to me when they get around to me. When I finally got back this morning, for example, several were tinkering around on their cell phones, engaged in various social commentaries and conversations and hanging out at the water cooler so to speak while the office was filling up with patients. Like I said, I was the 2nd patient in the door this morning with an 8:00 a. m. appointment; by the time they called me back there were a dozen patients in the waiting room. I wonder if they all had 8:00 o’clock appointments? Now I know, it’s probably boring and mundane work doing the same over and over day in and day out, but come on, it’s the first time many of us have had cancer! Shouldn’t that count for something?
Forgive me for the vent, but I’m trying to present the day to day events of one guy with cancer and what goes through his mind, what happens, when it happens, his reaction to it and so forth. I intend to look back on this account several years from now and let it remind me of the good, the bad and the ugly. And let me reiterate: my blessings continue and there have not been a whole lot of the bad and ugly. Mostly irritations and I don’t mean to show my whiney ass about them, but I can’t help it.
Anyway, saw Dr. Doogie this morning. I very seldom see Dr. Singh anymore, but I believe him when he tells me I can see him and talk with him whenever I want to. I have his phone numbers, including his private line. All blood counts are good, including the PT/INR of 2.1. Whew! Finally, it’s where it’s supposed to be. Continue on the Coumadin 7MG. To return next week just for blood work. Week off from chemo! Will begin round 1 of Cycle 3 in two weeks. Following this, will have scans to determine what kind of response we’re getting with this ‘first line treatment.’ I’m fully persuaded I’m very much in this game. The Big C, in my opinion, is having trouble getting first downs. I’m hoping to have scored some points. We’ll know something in another month perhaps. Keep those prayers coming, and I’ll be thanking you for them.
Finally, my pee work-up from the specialty lab is in and I have an appointment with Dr. Bellecci this coming Monday to see where I need to put some dietary work in to help further create as hostile an environment as possible. If the Big C is indeed found to be languishing in a 3 and out (football analogy: failing to get first downs and having to punt) then we’re going to try and give it even more misery and continue to snuff the sumbitch! Go Me!
Finally, just as info: billing has gone well over $100,000.00 to date.
August 17, 2009: Went in for the sit-down with Dr. Bellecci this morning. We reviewed the report from Genova Diagnostics. Remember, we’re employing the integrative approach to the treatment of the cancer and Genova Diagnostics is a specialty lab that attempts to analyze your blood/urine to see what nutritional deficiencies you might have and suggest a plan via foods and supplements that creates as hostile an environment as possible for cancer. The report focuses on three (3) major areas: (1) Organic Acids (2) Amino Acids (FMV) and (3) Oxidative Stress. The report is long and detailed and I’m not educated enough to know the significance of it all, but I’m learning as much as possible as I go along and I have complete faith in Dr. Bellecci’s expertise in this field. Long story short, I present with some really strong readings in some areas. This is a good thing and may account partially for the good chemo tolerance I’ve had to date. As might be expected I’m not problem free. I have a major problem with Oxidative Stress (actually, the garbage and trash left over in my body from foods and chemo and other sources of ‘free radicals’ that it needs to rid itself of. An initial plan for addressing these needs is pretty well developed, including a “Suggested Vitamin and Mineral Supplement Schedule” furnished by Genova to be tweaked by the attending physician (Bellecci). Look up what is called the “Krebs Cycle” for a pretty good insight into the subject.
Anyway, enough of that. I’ve got my plan, a sack full of dietary supplements and I’m on my way. There is reason to believe that I may get significant respite from the incredible fatigue and persistent washed out feelings I’ve had since starting chemo. If I can regain my energy and stamina, I will no longer be acting like a dead man walking. I have no doubt that I’m going to do just that, too. Buckle-up Big C, I am bringing in some reinforcements.
Have the week off from chemo this week. Just some blood work on Wednesday and then next week will get started on Round 1 of Cyble 3. Get it on, chile! Get it on!
August 19, 2009: Went in to see Dr. Doogie today and had my PT/INR blood check. Levels a little too high so he cut me back to 6MG Coumadin. Edema and neuropathy persist, but it's at level 1 and is not a matter of great concern according to the Doc. Mouth and tongue a little on fire and I certainly don't want that (Mucositis) to get away from me so the doc fixed me up with a little "Magic Mouthwash" (look it up) and I've swilled/swished once with that already today. Hope it helps. Must have done something, it burned like hell. The blisters/rash on hands and arms seem to be drying up and scaling; looks like crap, but it's not really bothering me. Probably grosses out those who have to look at it, but, hey, what can I do about that?
Round 1 of Cycle 3 begins next Wednesday. Looking forward to the scrimmage against Tift Friday night. Go Gators! Hope I can see 8 or 9 wins in them; have already concluded we can't win them all, but what do I know?
August 26, 2009: I went in today for chemo. 1st round of Cycle 3. 8:00 o’clock appointment; called in for blood work and set-up at 8:20 and put in a room to wait for the doc. Doogie got to the office well after 9:00 a. m. He got tied up at the hospital with a patient and was running late. Can certainly appreciate that. Tending to patient most in need was certainly the right thing to do. As for me, got started on chemo about 9:35 a. m. Didn’t leave until after 1:00 p. m.
Story: My PT/INR back down to 1.4 on 6MG Coumadin; Doogie said to kick it up to 7MG a couple of days this coming week. Also said it’s not nearly so important keeping the level between 2.0 and 3.0 now as it was early on when I first went into atrial/fib.
Further, the accumulative effect of the poison is beginning to throw the CBC blood counts out of whack a little but nothing close to precluding chemo. This to a large extent is expected development. Does put me at greater risk of infections, etc. and goes to that old saw that the treatment is sometimes more harmful than the disease. Other than that, the neuropathy persists, legs are weak and a little wobbly, especially the left with a good deal of numbness in lower leg on the front of the leg, tired and lethargic at times, hair is thin, and whiter, but not out, lot of fluid still being retained, feet stay swollen. Dr. Doogie renewed Lasix Rx. (That could be pulling the WBC down a bit.) Have added guided imagery to the integrative treatment plan. Just got the Belleruth Naparstek CD "A Guided Mediation to Support a Healthy Immune System" and I'm full in with the dietary mineral and dietary supplements Dr. Bellecci has recommended.
Overall though, I still feel remarkably well for a fellow in my condition and I seem to still be tolerating the treatment quite well. "Magic Mouthwash" seems to have helped the sore tongue. Moreover, I am persuaded as soon as football season kicks off this Friday night my immune system will undergo a major super charge! I intend to be in Jardine Stadium to watch the opening game for the Gators! Youngest son going with me in case somebody has to wheelbarrow me in or out! Semper fidelis!
August 31, 2009: Ware literally 'snatched victory from the jaws of defeat' over in Douglas Friday. After falling behind 13-0 the Gators put together some tenacious defensive and sporadic offensive play to score 17 unanswered points and stole that game from the Trojans 17-13. Lesson for me: never give up, keep plugging, do what you have to do and you can win when by all rights you maybe should have lost. I made out pretty well; didn't sit quite as high in the stadium, but man, I loved that game!
Rest of the weekend was uneventful for me. Everything remains about the same and I go in for Chemo, Round 2 of Cycle 3 this Wednesday.
September 2, 2009: Reported promptly for 8:15 a. m. chemo appointment: Round 2 of 3rd cycle. Things were smooth and efficient. Set-up, blood check, PT/INR check; saw Dr. Dougie about 8:45 a. m. Chemo begun around 9:00 a. m., finished up 11:50 a. m. Shortest trip to the poison drip to date. Good news doesn’t stop there. All blood counts back to near normal. Dougie asked if I were working “some magic.” But, of course, I said: drinking every fruit juice known to man; popping anti-oxidant-vitamin-and energizer pills like crazy; guided imagery and voodoo, wet dreams, Christian-Hindu-Allah-Budda-etc. prayers galore. Immune system super-charged, and Dougie agreed, saying my body was acting like a 50-year-old. I told him I was probably just before a cure and that he was doing a good job! Dr. Doogie looked funny and fell speechless. He’s probably more accustomed to dealing with what Dr. Lunderg (Lundberg Institute) calls “chemotherapeutic false hope, along with real suffering from adverse effects, to patients with widespread metastatic cancer” than somebody like me.
So instead of trying to respond to that, he reviewed all my problems. Get tired/fatigued a lot still. Much swelling in lower legs and feet, numbness persists on the left. Feet are numb. Told him I probably could walk on burning coals. He confirmed the swelling: “pitted” edema. Said the heart could be failing a little. Also suggested I double up the Lasix (diuretic) a few days a week and see if it helped some, just do not get dehydrated. Am getting around okay, staying at home mostly and doing my best not to get around sick people and washing my hands obsessively. Dougie said to get the regular flu shots that I get every year, “if you can find them.” Go in next week for Round 3 of 3 and then to Jacksonville for another $4,500 Pet Scan. They will make the appointment.
NOTE: Total billed for medical services since diagnoses: $120,000!
September 9, 2009: Just another day at the poison mill. Finished up Cycle 3 today in another “quickie”. Had 8:00 a. m. appointment and got out before noon. Blood counts holding at or near normal, according to Dr. Doogie. Neuropathy remains pretty significant in lower legs and feet. Terrible shortness of breath on exertion; can’t walk a city block without rest. Oncologists do not seem to care about peripheral issues that crop up; they just stay focused on the cancer and their treatment of it. That’s why my primary care physician, Dr. Pauline Bellecci is and will remain the Captain of my team!
In fact, I am picking up some L-Glutamine from Dr. Bellecci this week in hopes it will help the neuropathy. Discussed this with Dr. Doogie; he apparently doesn’t believe it will do much good, but did say he doesn’t think it will do any harm. Fine! We’ll go with the G! No numbness in upper extremities. Hair seems to be coming back slowly but it’s still pretty thin and is white. Tiredness/fatigue remains prominent in my repertoire of tolerable side effects. I am still persuaded that I have some edema (fluid retention) that is being masked by the neuropathy. Dr. Bellecci says she is going to speak with my Cardiologist in Savannah about the “peripheral” issues; may do another echo, I suppose, to see if I may be having some CHF (congestive heart failure). Will know more about that later. I’m a mess, ain’t I? But make no mistake, I’m still in this game and I still intend to kick Big-C’s ass.
Have appointment for PET scan next Thursday, September 17 in Jacksonville. Doogie is now talking about adding Avastin to my poison drip; I take it that he doesn’t think the PET Scan is going to show that I’m cured! Hehehehe! Oh, these scientists! They underestimate the power of my voodoo! Just kidding, of course, I appreciate and respect evidence based medicine and that’s where Doogie is coming from. Nothing wrong with that.
In any event, I have a week off the chemo now. Whew! That's a good thing. Got some good football coming up. Ware County hosts the number one AAAAA team in the state, Lowndes County, this Friday; we’re picked to lose by 35. I doubt they’ll beat us that bad. Who knows, we just may fat lip them and send them back to Valdosta with serious doubts about their manhood! It can happen!
September 17, 2009: Today was my mama's birthday! God rest her soul. I was wrong about how bad Lowndes would beat us. They killed us: 41-0! I'm off to Jacksonville for the PET/CT. Mama, speak to the Man for me, please! I need some good news from this follow-up.
September 18, 2009: Met with Dr. Srinivasan (Dr. Doogie) this morning. Reviewed PET/CT scan results. In terms of tumor dimensions (size) there appears to be no change. Here are the verbatim impressions from the written report:
1. Continued hypermetabolic nodular density in the medial right upper lobe, slightly improved metabolically since the prior study.
2. No metabolically active mediastinal or hilar lymph nodes are seen.
3. No metabolically active lesions are seen in the liver or adrenal glands.
4. There is persistent evidence for metastatic disease in the L4 vertebra, which appears to be mildly progressive since the prior study. There is also evidence for a metastatic lesion in the posterior aspect of of the calvarium, also mildly progressive since the prior study. A hypermetabolic focus is also seen on the left iliac crest, also mildly progressive since the prior study.
5. Continued follow-up with PET-CT is recommended to assess for interval response to therapy.
Don't know why I didn't think of it earlier, but here are the written reports of my two (2) PET/CT scans, a before and after if you will. You will need the Adobe Reader to view. Click HERE.
In short, there doesn’t seem to be a hell of a lot of improvement or progress by way of a beat down on the cancer. On the positive side, it doesn’t seem the Big C has been able to advance his agenda too much. To continue the football game analogy we’ve employed throughout these reports, we seem to be tied at the half. We are probably going to change my treatment protocol, if I understand correctly, and go with a new drug called Alimta. Whether anything else will be employed with Alimta is pending some additional consultation amongst the docs. We’ll put our heads together again next Wednesday and finalize the tweaks in my treatment.
One final note: Dr. Doogie said stopping the Taxol should result in some improvement in the amount of fluid and swelling I have in my feet and legs. That will be a godsend in itself. We’re also investigating the possible source for the shortness of breath; stopping the Taxol may contribute to that, too.
Cancer is a formidable foe. Actually, he’s an insidious bastard, but if he thinks we’re giving up the fight he’s got another think coming. We concede nothing! Let’s get the second half underway, and see who’s standing at the end.
September 23, 2009: Appointment today (8:30 a. m.) and talked with both Dr. Singh and Dr. Srinivasan (Dr. Doogie). Dr. Singh has studied my PET/CT scan more. He spent a good deal of time telling me he considered this PET report to be evidence of a “stable” disease as opposed to partial response and/or a negative response. He pointed out that there is no evidence of new problems, no major organ involvement and a good deal of improvement on the Standard Uptake Values (SUV) in the lung itself, especially with regard to the previous seen scattered 'nodules' in the lung. More encouraging is the fact that Dr. Singh explained that it is not unusual for uptakes to remain “bright” where the bones are involved. He said PETS notoriously reflect metabolically active lesions on the bone even when the treatment is positive, that they tend to come in “bright” or completely gone and do not show degrees of improvement as lesions in soft tissue like the lung. Moreover, inflamation and iinfection influence uptake readings on the bone. In other words, no reason to draw rigid conclusions about the bone lesions just yet.
For reference regarding chemotherapy response:
- Complete response - all of the cancer or tumor disappears; there is no evidence of disease. A tumor marker (if applicable) may fall within the normal range.
- Partial response - the cancer has shrunk by a percentage but disease remains. A tumor marker (if applicable) may have fallen but evidence of disease remains.
- Stable disease - the cancer has neither grown nor shrunk; the amount of disease has not changed. A tumor marker (if applicable) has not changed significantly.
- Disease progression - the cancer has grown; there is more disease now than before treatment. A tumor marker test (if applicable) shows that a tumor marker has risen.
On the treatment front, the drug Alimta has replaced the Taxol. I had a treatment today, but did NOT get any Zometa. I don’t know why, and I didn’t realize it until after I left. I’ll ask about that tomorrow when I go in for a shot of something to help blood count or platelets or something. I’m confused pretty badly and every time I mention some complaint and/or side effect that I'm experiencing it seems I get three more pills to take. I am now taking 17 different drugs and/or supplements via a pill, powder, or inhaled mist, not counting the drugs associated with the chemotherapy itself. In addition to that, I’m getting a shot of something right regularly. I got out all the pills, etc. today after I got home from chemo and made a list along with all the “special instructions” and I’ll be damn if I know exactly what is going on. I’ve got to get some medical counseling. I can’t stand to be taking crap and not knowing for sure what the purpose or goal is. I know a lot of the effort is related to getting rid of all the fluid I’m retaining. I weighed a whopping 245.4 pounds today -- more than I’ve ever weighed in my entire life! But still, it embarrasses me the amount of crap I’m taking. I hate for anybody to see the pill bottles.
Finally, if I understood correctly (and I’m not sure I did) I won’t be getting chemo every week now. I don’t know for sure whether it’s every other week or once every three (3) weeks. But I’ll find out. It’s just that my pea-sized brain is overwhelmed at the moment, (especially after today’s visit to the poison mill) but I’ll get it directly. Make no mistake about that!
Finally, I have to go get a Doppler/Ultrasound on lower legs in the morning at the hospital (I think to rule out thrombosis in the area; no suspician of clots, I don't think, just to rule out and, of course, to spread the wealth) and I will see Dr. Bellecci on Monday. Hope to have everything figured out and understood by then.
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 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!
