Just got back from Houston late last night following a couple of days of restaging tests and consultations. Monday was spent getting chest, abdomen and pelvis X-rays, and in the afternoon the dreaded CAT-Scan. Wednesday we met with the Oncologist and reviewed the results of these tests and the progress to date.
Mary went down with me on Sunday and it was a very good trip - full plane between Albuquerque and Dallas and another full plane between Dallas and Houston, so was a little more cramped than I like. On the return flight last night, we had a direct flight from Houston to Albuquerque with a total of 33 passengers on board. The gate agent threatened us that if we each didn't go round up 5 more passengers we wouldn't take off because the 33 of us couldn't pay for the fuel. But we did take off as scheduled. Coming in when we arrived in Houston, we did decide to take a little different route and got off the Interstate right at the street next to Reliant Stadium, the new home of the Houston Texans. We were lucky that the game had been over for awhile and only a few stragglers were still leaving the stadium. Reliant sits right next to the old Astrodome and I remember when I thought the Astrodome was a giant stadium. You could probably put three Astrodomes inside the new Reliant stadium. It has a retractable roof they close if it is over 90 degrees or under 58 degrees. I suppose the close it for rain too - maybe even snow!
We were so hungry by the time we got there we went to a Tex-Mex restaurant. It was okay, in fact I would have probably appreciated it if I didn't know what real Mexican food tasted like.
Tuesday the X-rays were no big deal and I got through those in quick order. They also took some blood and weighed me. Then we go to the CAT-Scan. I have had four or five CAT-Scans in conjunction with this cancer thing. The ones I had at Presbyterian in Albuquerque - you had to take off your shirt. The one at NM Oncology, you didn't remove any clothing. At MD Anderson, you take off everything - including all underwear, except your shoes and socks. Now they have made one improvement. The last time you had to put on one of those gowns with two flimsy stings in the back and a whole lot of fresh air in the back. I can just barely tie my shoes without help - I am supposed to tie those strings that I can't even find back there? I wanted to overlap the gown and staple it shut, but that was not acceptable. I remember last time I wanted to just kind of shuffle down the hall sideways with my back up against the wall, but that didn't appear to be acceptable either. Now they have replaced the gown for men with trousers and a top. They are flimsy too, but at least it is better than the gown. I feel stupid walking around in the outfit to begin with, then you look down and you have a pair of shoes and socks on. It is like putting a neck-tie on a naked man when he goes to the dentist. Of course, those of you who know me realize I am very modest, very shy and very conservative. Or, you might say I am a coward and a chauvinist pig. Real men don't wear silly flimsy pajamas and no underwear down the hall in public!
The dress code is only one of the unpleasant events leading up to the CAT-Scan. They have this stuff (barium) you have to drink so everything on the inside will show up on the CAT-Scan. They usually have a banana flavor and an apple flavor. They announced they were out of both. Then the lady asked, what I interpreted to be, "Do you want a Barium?" I thought that was a stupid question. Of course I didn't want it - but did I have any choice? I just kind of stared at her and she asked the question several times. I finally realized she was asking; "Do you want a berry one?" So I took the berry barium - as if I had a choice. I was given two glasses - I think each one held at least two gallons, and had to drink those down. Then they sent me into another room where I sat around with other partially naked people in recliner chairs and got this thing injected into my arm so they could put iodine into my body during the CAT-Scan. And, those nice people gave me a little bonus. They gave me one more glass of barium. But I did learn one important thing I had never figured out before. You get a straw and you start sucking and just keep sucking and never take a breath til you reach the bottom of the glass. That way you only taste that nasty stuff once instead of each time you take a sip.
Okay - now we go into the room where they scan for cats. They have all kinds of wonderful instruments they use to tell what is inside of you. I won't go into the details, but there is a reason you don't have any underwear on. Dang - that's humiliating! Why don't they just get a flashlight and look down your throat. At least last time I had three male assistants doing the prep. Surprise! No male assistants - one female type is running the whole show. I am sure she is a very nice lady, but I could visualize her as a linebacker for the Green Bay Packers, or perhaps a Drill Sergeant in the Marine Corps. "Okay - Mister, roll over on your side!" If I had known all the little unpleasant exercises I was going to have to endure when I started this whole program, I may have just opted to skip the whole thing.
Finally finished this little exam, got dressed and left that horrible place. Even though I was fully dressed now, for the next few hours I had this self-conscious feeling that I was walking around naked with a pair of shoes and socks on. I just knew everyone was staring at me, laughing at me, pointing to me. No wonder I have crazy dreams and nightmares.
Scott came in Wednesday morning to help keep an eye on me and we picked him up at the airport with me driving the rental car. We had a three way argument about whether I was supposed to turn left or right at the next exit. Actually, it wasn't a three way argument - it was two against one and you can guess who the lone person in the argument was. I won't say who was right, but I could have been right if we were going South instead of North.
We met with my Oncologist in the early afternoon and this is a demonstration of one of many major differences between MD Anderson and Presbyterian. The Oncologist had a complete report including computer graphics on the tests I had the day before. One example of Presbyterian is on two different occasions my wife, Mary, has had an MRI and eleven days later in one case and a week later in another, the MRI had not reached the doctor who was supposed to read it and evaluate what was wrong.
Now the good part! There is a test - I think it is referred to as a CA-19-9 which measures your cancer cells. I don't know what the element of measurement is, but they told me when I first came to MD Anderson it measured 360 - which, according to the doctor, is very high. Because of all the chemotherapy and radiation I have had - plus the fact that I am such a wonderful patient who never violates any of the rules of my diet, exercise, medication and extra curricular activities - the reading has gone from 360 to 30, which I guess is almost a normal reding. And, the tumor was 4.5 centimeters when I started and is 3 centimeters now, and most of the tumor now is liquid with a very small element of cancer in it.
This is fantabulous news to me!!!! We can just skip the surgery - it is almost cured - I can go home and back to my normal way of life. No way Jose!! Between the doctor, my wife and my son, Scott - who by the way is a wonderful son but who has developed a kind of bossy attitude lately - now is the time for surgery. Now that most of these cancer rascals have been killed - we will go in and round up the rest of them and take them prisoner - and I will be cancer free. At least that is the plan.
Actually I think the Oncologist was very surprised at the results (He didn't know I was such a good reliable patient)and he even acted excited about the results. He tried to reach the surgeon, but the Surgeon was in surgery, so the Oncologist said the team would meet today and I was to call the Surgeon for instructions today. They didn't even give me a chance to call. While I was in the airport in Houston, I got a call on my cell phone and they had already made an appointment for me to come back next Wednesday for a pre-operative exam with the Surgeon. It sounds like they are getting ready to sharpen up the knives with the intention of using them within a few weeks. I guess I will go back down by myself Tuesday so I won't have Scott there to take notes to remind me what I am supposed to do and not do. That could be very convenient.
I always worry about the wrong things. For some reason, I have never allowed myself to worry too much about the cancer or the operation. I now worry about how I am going to make it from the airport to the hotel in a rental car without the committee to tell me which direction I am going and whether to turn left or right. I might end up in El Paso. I am also worried about missing out on the International Balloon Fiesta which is coming up in October, and I have a buy one - get one free coupon at McDonalds that will expire if the timing of the operation isn't just right. Dang!
Well, I guess that is all the news I have for now - but it is good news for the most part. They seem to insist they are still going to cut on me, so there goes my chance for a centerfold opportunity in John Deere Quarterly - but that's life.
Love you - God Bless You and thanks for your prayers and thoughts!
AL
Thursday, September 27, 2007
Friday, September 21, 2007
FINALLY - BACK TO HOUSTON
I finally finished my chemotherapy in Albuquerque - I think. Got a message today to remind me of an appointment with New Mexico Oncology on next Monday to review everything and consider the possibility of more chemotherapy. Sorry folks - I ain't a gonna be here and if I was going to be here I would find some other reason for not being able to come. The last chemo session on the 10th was the easiest by far but just the accumulation of all the chemicals has made me feel pretty bad until today. I decided I was going to die as soon as I got feeling good enough to do so. But Monday I will be back at MD Anderson in Houston, so forget about talking to me about any more chemotherapy.
In addition to not feeling very good, I have worked as much as I could and have been up late every night working on an appeal to both Presbyterian and a firm called Maximus in New York. Presbyterian is required to file a statement with Maximus if the refuse a request for a referral and then Presbyterian is required to notify me that I can make an appeal to Maximus and they are bound by whatever decision Maximus makes. I spent a lot of time creating this appeal and ended up spending the evening up to midnight several nights trying to put it together and use the right words. Unfortunately my temper got in the way of my good sense a number of times and I would have to go back and redo pieces and parts. When I finally finished, my wife took a brief look at it and rejected it, my son didn't like it and my daughter-in-law offered many changes, so the committee took over. They re-wrote the letter using parts of my initial offering and sent it off. They used the "Dear Sir or Madam" at the top and my name and claim number and "Sincerely" and my name at the bottom and a few of my words in between. At least I guess it is good to know they care.
There are Angels flying above me all the time. In addition to the letter, a lady called and left me a voice message. I have no idea who this lady is, how she heard about me, or knew what my problems were, but her message told me that I needed an Advocate to run interference for me and deal with the doctors and other parts of the medical provider services. She gave me a number to her direct line and told me to call her. I finally got around to calling her and reminded her of her call and told her maybe I needed an Advocate. She immediately told me she would act as my Advocate and she got some information from me and said she would start contacting all parties involved. Within a couple days, I received a letter from my Oncologist, on the letterhead stationary of New Mexico Oncology Hematology Consultants, LTD - with all the doctors names listed, stating that I had finished my chemotherapy treatments and he did recommend me for surgery and recommended that all remaining work, including surgery, be done at MD Anderson in Houston.
I received this letter at home on Friday. First thing the following Monday morning I called MD Anderson in Houston and asked them to request a referral from Presbyterian. I told them I had a letter from Dr. Liebmann suggesting that I needed the restaging exams and surgery at MD Anderson. The lady at MD Anderson replied; "I know - I have that letter right in front of me."
She said she would request the referral. As soon as I got off the phone, my phone rang and it was a lady from Presbyterian calling to tell me they were going to approve my trip to Houston this next week and it would be covered. This is a lady who was assigned to me when I first started having problems with Presbyterian. She is somewhat an advocate and she has been helpful, but she is still on Presbyterian's payroll and a big part of her job is to pacify me and keep me from causing trouble. The fact that she called and gave me approval will make it very difficult for Presbyterian to back out now.
One month ago I had this exact same visit planned and I got it approved ten days before I was to go down. Two days before I was to leave, Presbyterian called and said it wasn't approved and caused me to run all over town to different doctors to get approximately the same exams - not nearly as extensive and thorough. Now Presbyterian is going to pay for me to go and do these exams. This has delayed my treatment by at least one month and it has cost them more money as they did have to pay for these exams in Albuquerque.
As I said, the last chemo sessions was the easiest. In fact it was so easy I went to the Healthplex the next day and walked three miles and did a light workout on the upper body machines. The next day I felt horrible - not from the exercise but from a sick feeling throughout my whole body. That has hung with me for about ten days and finally today I felt almost human again.
The bad thing is that I have lost about eighteen pounds since I first went down to Houston and about thirty eight since a year ago. The thought of any kind of food was nauseating. All of a sudden I have my appetite back. I am like a Hoover sweeper going through the house sucking up almost anything - like sweet rolls, french fries, potato chips, hamburgers, etc. I still don't have an appetite for celery, lettuce, carrots, cauliflower and broccoli. The doctors will be happy I am gaining weight as long as I don't tell them how.
New Mexico Oncology is a very nice new facility in a very nice area. Things got so bad that when I went down Jefferson street and got close to their facility, I would get nauseated. I mentioned this to the doctor and he said this was common. It is called anticipatory nausea.
At my last session, an elderly gentleman next to me had the same experience that I had on my previous visit. The needle came out of his vein and started pumping the liquid directly into his hand. However, they caught it right away and it didn't do nearly the damage that it did to me. The nurse told him he was lucky because at that point all they were giving him was saline solution. She said it could have been dangerous if they were giving him chemo at that point.
KINGS-X, TIME OUT, INSTANT REPLAY - HELLO! I called the nurse over and repeated what she had just said and told her they had pumped chemo into my hand and arm the week before and both got tremendously swollen and they still hurt two weeks later. She kind of dismissed me and my one sided conversation and left to do something else. Now, three weeks later, the swelling has gone down but it is still swollen and it still hurts some.
Only one more day at CarMax for awhile and it can't be too soon. Late yesterday I had a young man in his early twenties come in and wanted a test drive in a $35,000 Mercedes convertible coupe. It has a retractable hard top so nothing would do but we had to put the top down even though it was cold and the wind was blowing. As soon as we got out on the Interstate it started raining. First thing this morning I had a couple of guys come in who looked like they were still in high school and they wanted to look at every car on the lot, which is somewhere around 350. The policy is that you have to stay with your customer even if they are just looking around or killing time. These guys used up a good part of my morning. Then I had something happen that has never happened before. A van from a nursing home pulled up in the parking lot and this older gentleman with a white cane got out and came in. He wasn't totally blind, but his sight was poor. He said he wanted to buy a car. I put him on the golf cart and took him around very slow and finally he held up this bag he was carrying and told me he had 4500 one dollar bills in the bag. I think he probably meant he had 45 one hundred dollar bills, but in any event he had $4,500 in his bag. I apologized and told the man that we didn't have any cars in that price range - most of them don't meet our inspection standards. The least expensive would probably be at least twice that amount. Then I found out he didn't even have a drivers license and explained to him that we couldn't even sell him a car without a drivers license - that is a state law. I felt sorry for the old guy and suggested that maybe he should talk to his banker to see if it was wise for him to try to buy a car, and waited for his nursing home to come and pick him up. Another chunk out of my morning. This afternoon I had a man, wife and three children come in and they wanted a pickup truck. They needed one with a back seat and we found one they liked. It had a dead battery so we decided to take a similar one for a test drive. I told them someone would have to stay there as there were only five seat belts. The lady reminded me there were only five of them. She got a little upset when I said I had to come too, so she and the kids decided they would stay there. Then the man gives me a Mexican drivers license. You can't drive one of our cars unless you have an American issued drivers license. She had a New Mexico drivers license, so we decided to use her license. Then I said, if we were using her license she would have to come and she would have to be the one to drive. She is upset again. Finally we decided the husband and I would go on the test drive but I would do all the driving. I kept asking him questions on the test drive and he would nod and say; "Yah". I thought he wanted a Spanish station on the radio so I found him one and finally figured out he wanted to know how to turn up the air conditioner. I still haven't figured out how I figured that out, but he did say; "Yah" - so I think I must have done the right thing. We got back and through some motions and "Yahs" I finally figured out he still wanted to drive the truck with the dead battery. So, I went back up to the show room and got a battery charger - and walked back across the lot with this heavy thing and jumped the battery so we could go for a drive. Now I think this guy really wanted to buy a truck - it was a good customer. But I was getting exasperated when I had this wonderful thought. How bad do I want to make a sale? Not bad enough! We have a new sales person who is a wonderful person, does a great job - and he is from Mexico. Wham - brainstorm is coming!!
I run back into the showroom - "Ernesto - Ernesto - where are you?" "My wonderful friend, my distinguished colleague, my honorable associate and flawless friend - how would you like to have a gift, a gift of a truck sale with no strings attached - if you can just answer "Yah"?
Now this is bad - but this kind of thing has happened frequently since I started chemotherapy. I am going along great - when all of a sudden I hit this wall. At this point, I just flat don't care. Just let me out of here immediately, if not sooner. This is a time, I have learned, when I just immediately get dead tired, become angry, become sensitive over nothing, and in short become a jerk at times. I have also learned to get out of whatever I am doing immediately and forget it. I love cars, I enjoy selling cars, I love the people and there is a competitive aspect to it also. In the past I have stayed til midnight a few times when we close at 9:00 pm, just to make sure the customer is happy and satisfied. Not now - I will excuse myself and give away a sale rather than try to do something I can't do. However - it is all going to get better after I get past this cancer thing. I will sell cars to people who speak nothing but Japanese, Chinese, or even West Texas when I get through this surgery. I will so overwhelm them with my magnificent personality - they will be speechless and I won't need to understand their language.
We will get back to you after Houston - God Bless you and the very best to all of you!!!!
Albuquerque Al
In addition to not feeling very good, I have worked as much as I could and have been up late every night working on an appeal to both Presbyterian and a firm called Maximus in New York. Presbyterian is required to file a statement with Maximus if the refuse a request for a referral and then Presbyterian is required to notify me that I can make an appeal to Maximus and they are bound by whatever decision Maximus makes. I spent a lot of time creating this appeal and ended up spending the evening up to midnight several nights trying to put it together and use the right words. Unfortunately my temper got in the way of my good sense a number of times and I would have to go back and redo pieces and parts. When I finally finished, my wife took a brief look at it and rejected it, my son didn't like it and my daughter-in-law offered many changes, so the committee took over. They re-wrote the letter using parts of my initial offering and sent it off. They used the "Dear Sir or Madam" at the top and my name and claim number and "Sincerely" and my name at the bottom and a few of my words in between. At least I guess it is good to know they care.
There are Angels flying above me all the time. In addition to the letter, a lady called and left me a voice message. I have no idea who this lady is, how she heard about me, or knew what my problems were, but her message told me that I needed an Advocate to run interference for me and deal with the doctors and other parts of the medical provider services. She gave me a number to her direct line and told me to call her. I finally got around to calling her and reminded her of her call and told her maybe I needed an Advocate. She immediately told me she would act as my Advocate and she got some information from me and said she would start contacting all parties involved. Within a couple days, I received a letter from my Oncologist, on the letterhead stationary of New Mexico Oncology Hematology Consultants, LTD - with all the doctors names listed, stating that I had finished my chemotherapy treatments and he did recommend me for surgery and recommended that all remaining work, including surgery, be done at MD Anderson in Houston.
I received this letter at home on Friday. First thing the following Monday morning I called MD Anderson in Houston and asked them to request a referral from Presbyterian. I told them I had a letter from Dr. Liebmann suggesting that I needed the restaging exams and surgery at MD Anderson. The lady at MD Anderson replied; "I know - I have that letter right in front of me."
She said she would request the referral. As soon as I got off the phone, my phone rang and it was a lady from Presbyterian calling to tell me they were going to approve my trip to Houston this next week and it would be covered. This is a lady who was assigned to me when I first started having problems with Presbyterian. She is somewhat an advocate and she has been helpful, but she is still on Presbyterian's payroll and a big part of her job is to pacify me and keep me from causing trouble. The fact that she called and gave me approval will make it very difficult for Presbyterian to back out now.
One month ago I had this exact same visit planned and I got it approved ten days before I was to go down. Two days before I was to leave, Presbyterian called and said it wasn't approved and caused me to run all over town to different doctors to get approximately the same exams - not nearly as extensive and thorough. Now Presbyterian is going to pay for me to go and do these exams. This has delayed my treatment by at least one month and it has cost them more money as they did have to pay for these exams in Albuquerque.
As I said, the last chemo sessions was the easiest. In fact it was so easy I went to the Healthplex the next day and walked three miles and did a light workout on the upper body machines. The next day I felt horrible - not from the exercise but from a sick feeling throughout my whole body. That has hung with me for about ten days and finally today I felt almost human again.
The bad thing is that I have lost about eighteen pounds since I first went down to Houston and about thirty eight since a year ago. The thought of any kind of food was nauseating. All of a sudden I have my appetite back. I am like a Hoover sweeper going through the house sucking up almost anything - like sweet rolls, french fries, potato chips, hamburgers, etc. I still don't have an appetite for celery, lettuce, carrots, cauliflower and broccoli. The doctors will be happy I am gaining weight as long as I don't tell them how.
New Mexico Oncology is a very nice new facility in a very nice area. Things got so bad that when I went down Jefferson street and got close to their facility, I would get nauseated. I mentioned this to the doctor and he said this was common. It is called anticipatory nausea.
At my last session, an elderly gentleman next to me had the same experience that I had on my previous visit. The needle came out of his vein and started pumping the liquid directly into his hand. However, they caught it right away and it didn't do nearly the damage that it did to me. The nurse told him he was lucky because at that point all they were giving him was saline solution. She said it could have been dangerous if they were giving him chemo at that point.
KINGS-X, TIME OUT, INSTANT REPLAY - HELLO! I called the nurse over and repeated what she had just said and told her they had pumped chemo into my hand and arm the week before and both got tremendously swollen and they still hurt two weeks later. She kind of dismissed me and my one sided conversation and left to do something else. Now, three weeks later, the swelling has gone down but it is still swollen and it still hurts some.
Only one more day at CarMax for awhile and it can't be too soon. Late yesterday I had a young man in his early twenties come in and wanted a test drive in a $35,000 Mercedes convertible coupe. It has a retractable hard top so nothing would do but we had to put the top down even though it was cold and the wind was blowing. As soon as we got out on the Interstate it started raining. First thing this morning I had a couple of guys come in who looked like they were still in high school and they wanted to look at every car on the lot, which is somewhere around 350. The policy is that you have to stay with your customer even if they are just looking around or killing time. These guys used up a good part of my morning. Then I had something happen that has never happened before. A van from a nursing home pulled up in the parking lot and this older gentleman with a white cane got out and came in. He wasn't totally blind, but his sight was poor. He said he wanted to buy a car. I put him on the golf cart and took him around very slow and finally he held up this bag he was carrying and told me he had 4500 one dollar bills in the bag. I think he probably meant he had 45 one hundred dollar bills, but in any event he had $4,500 in his bag. I apologized and told the man that we didn't have any cars in that price range - most of them don't meet our inspection standards. The least expensive would probably be at least twice that amount. Then I found out he didn't even have a drivers license and explained to him that we couldn't even sell him a car without a drivers license - that is a state law. I felt sorry for the old guy and suggested that maybe he should talk to his banker to see if it was wise for him to try to buy a car, and waited for his nursing home to come and pick him up. Another chunk out of my morning. This afternoon I had a man, wife and three children come in and they wanted a pickup truck. They needed one with a back seat and we found one they liked. It had a dead battery so we decided to take a similar one for a test drive. I told them someone would have to stay there as there were only five seat belts. The lady reminded me there were only five of them. She got a little upset when I said I had to come too, so she and the kids decided they would stay there. Then the man gives me a Mexican drivers license. You can't drive one of our cars unless you have an American issued drivers license. She had a New Mexico drivers license, so we decided to use her license. Then I said, if we were using her license she would have to come and she would have to be the one to drive. She is upset again. Finally we decided the husband and I would go on the test drive but I would do all the driving. I kept asking him questions on the test drive and he would nod and say; "Yah". I thought he wanted a Spanish station on the radio so I found him one and finally figured out he wanted to know how to turn up the air conditioner. I still haven't figured out how I figured that out, but he did say; "Yah" - so I think I must have done the right thing. We got back and through some motions and "Yahs" I finally figured out he still wanted to drive the truck with the dead battery. So, I went back up to the show room and got a battery charger - and walked back across the lot with this heavy thing and jumped the battery so we could go for a drive. Now I think this guy really wanted to buy a truck - it was a good customer. But I was getting exasperated when I had this wonderful thought. How bad do I want to make a sale? Not bad enough! We have a new sales person who is a wonderful person, does a great job - and he is from Mexico. Wham - brainstorm is coming!!
I run back into the showroom - "Ernesto - Ernesto - where are you?" "My wonderful friend, my distinguished colleague, my honorable associate and flawless friend - how would you like to have a gift, a gift of a truck sale with no strings attached - if you can just answer "Yah"?
Now this is bad - but this kind of thing has happened frequently since I started chemotherapy. I am going along great - when all of a sudden I hit this wall. At this point, I just flat don't care. Just let me out of here immediately, if not sooner. This is a time, I have learned, when I just immediately get dead tired, become angry, become sensitive over nothing, and in short become a jerk at times. I have also learned to get out of whatever I am doing immediately and forget it. I love cars, I enjoy selling cars, I love the people and there is a competitive aspect to it also. In the past I have stayed til midnight a few times when we close at 9:00 pm, just to make sure the customer is happy and satisfied. Not now - I will excuse myself and give away a sale rather than try to do something I can't do. However - it is all going to get better after I get past this cancer thing. I will sell cars to people who speak nothing but Japanese, Chinese, or even West Texas when I get through this surgery. I will so overwhelm them with my magnificent personality - they will be speechless and I won't need to understand their language.
We will get back to you after Houston - God Bless you and the very best to all of you!!!!
Albuquerque Al
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