Back on the chemo train

   4-16

   Tuesday we drove to Houston and moved into a friend’s 5^th wheel travel trailer to have a place to stay while I had appointments at MD Anderson. Yesterday was my first. It was basically just to let me know what I was in for today. Today I checked into one of the clinics for a lung biopsy. This was to confirm that the nodules that the PET and CAT scans had found were indeed from the original cancer and not a new strain. I had been told before that it’s a 99% chance that it would be. The biopsy went well I suppose. I say suppose because they gave me some joy juice and after I got on the table I don’t remember anything until I got to recovery. From what I had seen on a video that they showed me yesterday they use a CT scan to position a biopsy needle into the nodule to take a sample. The sample then goes to the lab and 3-5 working days later your doctor has the answer. Hopefully that will be Tuesday when my next appointment is. I’ll let y’all know what the results are when I get them.

   4-17

   All of the people at MD are extremely nice. You just look a little lost and someone will stop and ask you where you need to be and give you directions there. The hospital is comprised of a ton of clinics scattered out over a sizeable part of downtown Houston referred to by many as the medical district. I don’t know how many hospitals there are here, but it’s quite a few. The clinic we were in yesterday was connected to the main clinic by what they call a Skybridge. This connects two buildings that for all intents and purposes are across the street from each other. It’s almost 3/8 mile long and they have shuttles to take you back and forth, which is great because after my procedure I doubt if I could have walked that far without sitting and resting or maybe a nap.

Afterward, I felt fine, just a little tired, an aftereffect of the joy juice. Later that evening the biopsy site was sore. I learned to sit up as much as possible. Deep breathing is also to be avoided for a few days. Today mild exertion still causes a bit of pain.

So far I feel that MD is giving me the absolute best care available. We have done quite a bit of research on different clinics and MD Anderson comes out on top every time. One well known clinic that does a huge amount of TV advertising seems to only be interested in how much money you have or what kind of insurance. MD is interested in you no matter what your situation is. Of course they need to be paid like anyone else, but it’s not their first concern. They have both social workers and financial aid help if you need it. The social workers can even help you find local housing.

   4-21

   Today I saw my oncologist and she confirmed that it was from the original site. The official name is squamous cell carcinoma. After talking a bit, she asked how soon I wanted to start chemo and if I was interested in taking part in a study of a new medicine. I told her that I was ready to start when they were and yes I was interested in any medicine that had a possibility of a cure. So that got that ball rolling. It looks like I’ll be taking chemo for 18 weeks, 6 rounds of 3 week intervals that start tomorrow. The trial drug is a pill that you take once a day. Of course you probably won’t ever know if you’re getting the drug or not because it’s a blind study. Half of you get it and half get a placebo ( sugar pill ). They have warned me of the side effects and I guess this is one time that you’re rooting to get the side effects. The drug has already proven useful in other cancers, but our wonderful FDA can’t fast track anything that might actually help someone. The IV chemo will be Carboplatin and Docetaxel. The pill is Erlotinib. If anyone is interested in what each of these drugs do etc. , contact me and I’ll let you know. I figure that very few people are actually that interested in the actual drugs and would really only be interested to see if any of it works. They have already prescribed anti-nausea meds for me in anticipation of some of the side effects. I can only hope and pray that the side effects are no worse than the first time.

I’m going to post this now and I’ll try to do better in letting everyone know what’s going on.

Some good news, I hope

   Before I get started if you will look over to the right,  just underneath my picture, you will notice a new box. This is for email notifications of any new post. I don’t have Facebook, Teresa does and I know that’s how most of you are getting notified of updates. If you want an email, just fill it out. And if you want to make a comment, you have to click on the thing that says No Comments at the bottom of the post. Who woulda thunk it ?  Yeah, I know it seems backwards to me too. I’m working on a way to fix that.   Meanwhile on with it.

   4-2

   As I write this we are waiting to hear from MD Anderson as to whether or not I will be accepted into one of their treatment programs. I’m not really anxious other than I just want to get out and do something. We are staying with Teresa’s brother and his wife in the Cypress area, just north of Houston. Teresa’s surgery was last week and her doctor is only about five miles from here so this is extremely handy. We will be staying here until her checkup next week. After that we will head home unless we hear from MD.

   Later that day

     After a quick check of my email I had 3 emails from MD. One to let me know that they had approved my insurance, one to fill out a form online about my health history, and one to tell me about my first three appointments. Wow, that was fast. I’ve only had insurance for a couple of days, not even long enough to get a card or a policy. Terri had been talking lately to Social Security, the VA, and an insurance company and has pulled all of this off in four days. I don’t know if she’s a magician or what, but to put all of this together in this short amount of time is nothing short of amazing to me.

   I know this one is really short, but I wanted to let everyone know about this. I’ll let y’all know when I find out more.   Stay tuned.

Put your seatbelts on y’all, this one’s gonna be rough.

   Well, this is one I was hoping not to have to write. The last appointment I had with the VA wasn’t good news. I had three appointments that day, ENT, radiation and chemo. Chemo was set to be 1^st at 10:30, but due to overbooking after 2 ½ hours we had to go to the ENT appointment. Everything there was all clear, but they gave me the results of the latest CAT scan. However, they were vague about how to interpret it, so I went on to radiation for the next appointment. He too was vague about the exact meaning, but did confirm that the fact that the nodules in my lungs were cancer that had metastasized ( moved ) from the original site in my tonsils. He also said that they had tripled in size since the last scan three months ago and that current radiation treatment programs available through the VA were too destructive to lung tissue to be practical. Their beam can’t be focused tightly enough to be therapeutic without damaging a lot of surrounding area and thereby essentially destroying too much lung.  After we left there we went back to chemo where we waited another hour or so and finally got in. There we finally got the answer we didn’t want. Without treatment I would have a little over a year to live. The chemo Dr. said that with another round of chemo that I could have as much as five years. She asked if I wanted to do that and of course I said yes, so she put me on a schedule to be seen again for evaluation as to what type of chemo I would get this time. She did say that there were several spots ( no one has ever said exactly how many ) but only two had grown so much. The whole day a downer to be sure.

   We went home to start breaking the news to family and some close friends. Our friends that had bought me the teeth, Terri and Michael, called to ask what we were doing that weekend and we told them to come on up. I figured that they should probably know first since I still wasn’t really sure how I was going to break this to my family and I knew that they would be able to help me with the dialogue. As it turned out, Terri, who is a genius at research, found a program at MD Anderson in Houston that pioneered a program that a nationally known cancer center is now using. Their program involves a very tightly focused beam of radiation and possible chemo. The tighter focus on the beam allows it to kill the cancer with very little damage to surrounding areas.

   We’ve now gotten started on that and are just waiting on paperwork to go through for the doctors to review to see if I will qualify for their program. The biggest downside to this is that I will have to be in the Houston area for about two months while undergoing treatment.            However our friends have bought a 5^th wheel camper trailer that can be parked fairly close to MD. Without these two friends we would have been very nearly lost. 

   On top of all of this Teresa has had her surgery for her hiatal hernia, which went well, so we have had a lot on our plates lately. The timing of all of this together has been hard, but Terri has been able to stand off with a calm eye on the situation and an ability to figure out a way through all of this. Terri has started a gofundme account to help us manage our dwindling finances. The link to this is  www.gofundme.com/thankyoufriends . There is a short story to explain to those who aren’t familiar with what is going on. Any size donation is greatly appreciated. This part in particular is especially hard for me as I have never really needed much help before, but after being off of work for over a year and with only social security to rely on for income, things have gotten awfully tight. And as always your prayers are greatly appreciated.

   On a good note, I’m eating much better now, although I still am not gaining any weight. However, it did take me 30 years to get up to my pre-treatment weight so I’m not really surprised at that. Also Teresa’s brother and his wife are letting us stay with them due to her surgery and doctor being only five miles away from here. It’s also fairly close to where our friends are living that are helping out with the thing with MD Anderson.

   So far that’s the worst of it. There are a few more tests that the VA has in store and if MD falls through, the VA has another round of chemo up their sleeve. I really don’t want anyone to get all weepy about this, mainly because I’m not. It’s not that I think that I’m superman or that I’m in denial ( that’s in Egypt isn’t it ). It’s just that I refuse to let this get me down. This past summer when my strength was at it’s lowest, although I didn’t feel as good as the Energizer bunny, I still kept pushing on. Don’t worry, I’ll let everyone know when it’s time to invest in Kleenex stock.

   Now I’m going to put this out there. To all of my driver friends out there be safe. I don’t really miss the traffic, but I do miss all of you. To my friends at TTI, it’s the best job I’ve ever had and I miss y’all too. And since I don’t know any fat ladies, it ain’t over by a long shot.

See ya later PEG

    Just a quick note here before I get started. My computer crashed shortly after writing this and it's taken me this long to recover the files ( still haven't gotten the computer up ). I wound up having to remove the hard drive and transfer all of the files to another hard drive that I keep as a backup. And no, I hadn't had a chance to back it up just before it crashed. Mostly I'm letting everyone know so that in case I don't get this figured out it might be a while before I can post again. This is being done on a borrowed machine. That being said, on with the news.

2-25

   Wow, today was one for the record books. We were getting ready for two appointments this morning when the GI lab called to reschedule an appointment we had had to cancel Monday due to the weather. It had been nasty with ice covering everything, so rather than risking life and limb, we had called to cancel Monday. They actually had an opening today, so we just added that one to the pile. The weather this morning was rain and snow, and if you have ever had to travel through DFW traffic with this type of weather, you could appreciate the fact that we were a little apprehensive about driving 75 miles in that stuff. However, the first appointment wasn’t until 1:00, so we waited until 11:00 to leave. By then almost everything had melted and there wasn’t any problem with traffic.

   The first stop was the dental lab where they took impressions for the dentures the VA will provide. The doctor there asked why I wasn’t going to the Ft. Worth clinic and I told her that it was because they had set it up for Dallas. She then called the Ft. Worth clinic and made arrangements to have the rest of my dental appointments done there. Score one for the VA saving us gas and time by moving it 30 some miles closer.

   Next was the GI lab to get the PEG tube removed. I had done some research on the web about this and I was more than a little nervous about this, and as I was about to see, for good reason. The doctor there said she was going to yank it out, that it would hurt, but only for a little bit. #%&@ Man was she ever right about that one. It felt like I had been hit in the stomach with one of those sling shots that you draw back to arms length to shoot. The pain only lasted several minutes, but it was intense. This thing had a mushroom looking thing on the end that was in my stomach. The doctor said that the stomach should seal itself in about 8 hours or so, and the hole in my abdomen would heal in several days and to stay out of soaking bathes until then.

   Then we were off to the ENT clinic for a routine checkup. Everything was fine there and soon I should be able to schedule these appointments a couple of months apart. We were in and out of there in about 15 minutes, another record.

   The greatest thing about today was that since the weather was expected to be bad this morning, traffic was a bit lighter than normal and there weren’t as many people clogging the halls to push your way through. In all, we drove 75 miles, made it through three appointments, drove back 75 miles, and made it back home by 4:30. That’s why I thought it should be a record.

   Also worth mentioning, everyone, and I mean everyone at the VA today was extremely nice and very helpful. While this isn’t a record by any means, it certainly deserves mentioning. I don’t know if it was the lighter patient load, ( although it was only down by a third or so ) or if there was just something in the air, but all in all it was a very good day there.

   Later that evening

I waited as long as I thought was necessary, (actually my stomach was growling) and I had my usual lunch of ramen noodles with an egg cooked in and some sausage with cheese. Thankfully there were no repercussions with the stomach. Normally I would have had some ice cream a little later, but I didn’t want to push it. Tomorrow will be another matter.

   3-2

   As you can see, several tomorrows have come and gone. My scar looks more like a bullet hole and I'm eating better than ever.

   If I can revive one of the laptops I have I'll try to get something more out before Teresa's surgery at the end of the month. I know my audience is limited, but I can honestly say I appreciate every one of you. Thanks for all of your prayers and don't be strangers.

More about the teeth

    2-3 Later that evening

    I must admit the teeth will take some getting used to. I suppose the fit isn't all that bad, but a mouth full of acrylic just ain't natural. But then again, what hasn't taken some getting used to. From the feeding tube in my stomach, laying on a table with your head and shoulders bolted down for twenty minutes a day, living without teeth, quitting smoking and drinking, etc. I think you get the idea. This past year has had a lot of things to get used to, for both Teresa and me. But then I hope that no one ever gets used to cancer. Especially not the doctors or the research scientists that are looking for the various cures.

   My first meal with them was meatloaf, spinach, and potatoes. I decided to stay on a modified soft diet for a bit while I get used to the new choppers. I have an extremely good gag reflex ( as the dental assistant found out yesterday, I tried to warn them ) and when I get too much food in my mouth along with a mouth full of acrylic, well you know. This, much like all of the rest of it has been a learning process. I have learned to take smaller bites but the one good thing is my saliva glands have kicked in a bit more. Dentists will tell you that this is a result of having something foreign in your mouth. Try finding a small smooth pebble, wash it, and then put it in your mouth. Your saliva glands will try to supply enough moisture to wash it down. This is also an old survivalist trick that works when you're out of water unless you are really dehydrated.

    2-4

    Today was more getting used to the new teeth. The dentist gave me some super grip goo to hold them in and after my experience last night trying to clean the crud off of them, I decided to try it today without it. It seemed to work fairly well, even when eating. One thing I have figured out is that they will have to be cleaned after eating. There are small gaps between the base of the plates and my gums and small pieces of food get between them. It gives a whole new meaning to brush after every meal.

    2-7

    It's been three days with the new teeth and the uppers are doing fine other than me trying to get used to my speech patterns. Try chewing up two pieces of bubble gum and layering it over the roof of your mouth and you can approximate the feeling of these dentures. The bottom plate still has a way to go, but I'm trying to give it time to either settle in or find the spots that need work before I go back for an adjustment. We stopped at Whataburger yesterday since I had been lusting after one for about eight months. For the uninitiated a Whataburger is a bit bigger than Mickey D's or Burger King and for me it is the closest thing to the hamburgers that my neighbors made when I was a kid. They had a burger joint and we would go there about once a month or so. Anyway, I found that although it tasted about like I remembered, but I wasn't quite ready for prime time. I could get through the fries just fine, but the burger was going to have to be cut up into small pieces. I wound up taking all but two small bites home to finish since fast food places don't seem to have actual flatware, and if you have ever tried to cut anything up with a spork, you'll understand. I did eventually finish it, but it served to push my schedule back for the steak at Outback quite a bit further out.

    2-9

    Tonight we had smoked sausage and squash. I almost amazed myself at how much I ate. I'm finally getting used to how to move food around in my mouth and how to chew with the new teeth. I had been without for so long I've had to remember how to chew. This morning I had bacon for the first time in about a year. That in itself was just about a hallelujah moment.

    2-10

    This morning we went to Cypress near Houston to see a doctor about Teresa's hiatal hernia. We had heard about him from her brother who had had the surgery a year or so back. We had heard that you wanted to find a surgeon that was more than just familiar with this type of thing ( as for pretty much any surgery ). The news there was good, we liked the doctor and he seemed very knowledgeable. He set it up for an endoscopy for tomorrow morning to see how bad it is. We stayed with her brother and sister in law and later they took us out for mexican food. Since it had been over a year since I had had mexican food I was all in. A bit later I found out that I should stay away from the chips since they have a tendency to get under the plates and dig holes in your gums. But the food was great and we had a good time catching up with them and they offered to put us up when she had the surgery.

    2-11

    Up at 5:00 to head to the hospital for the endoscopy. The actual procedure only took about twenty minutes, but there was a whole lot of waiting before, and more after. The doctor said that about 40% of her stomach was pushed up past her diaphragm so the surgery is definitely very necessary. We got back to her brothers house a little after 10:00 and after a bit more visiting we headed back home and finally got there about 5:00 PM. Along day to be sure.

2-13

I'm almost used to my teeth, but there are times it's just easier to take them out and eat something soft. They have helped my dry mouth out immensely.

    2-16

    I hope everyone had a good Valentines day. While ours wasn't terribly romantic, at this stage we're just happy to be together. This past weekend our friends came up from Houston and for once the weather cooperated. It was in the 70's all weekend, but now it has reverted to it's normal February self, cold, bleary, and just plain yucky. This time of year the weather brings both hope and resignation, beautiful spring days, followed by a freeze that makes you wonder what you did to make the weather turn on you. ( Hmmm, reminds me of an ex. )

Next week I go in to have the PEG tube removed and I'm not really sure how I feel about that. On one hand it's a minor pain to deal with it, mostly trying to keep the out of the way while I'm getting dressed. On the other, I may have to take chemo again and it's a good way to get nourishment if you don't feel like eating. And from what I've read they just pull it out. The type that I have has a butterfly looking thing on the end that's inside and I'm hoping that it just comes off to be passed on through the system. Otherwise I don't see how it will come through the quarter inch hole in my abdomen.

Well, this thing is long enough so it's off to the internet with it. I know several people have had difficulty trying to leave comments so if any of you have a mind to, you can email me at                       idctrk2842@fastmail.fm