On to chemo

Today was the first day of chemo. The day started well, that is until we actually got on the road. A three car pile up ahead of us stopped us before we could even get up to highway speed. And of course there were three cops and two firetrucks blocking all but the far left of three lanes. I guess it wouldn't do for one of the officers to go back and direct traffic, you know to protect ( other drivers from another accident ) and to serve ( direct traffic to make it move more efficiently and thereby reducing the backup ) . I know that there is no glamor in directing traffic, but it has become a real sore point with me. I have driven somewhere in the neighborhood of three million miles in my lifetime. This is nowhere near a record but I have seen where law enforcement actually put their heads together to make an accident scene more safe. It calls for someone in charge, usually a Sgt. or higher to arrive on the scene, assess the situation, and deploy the officers accordingly. I was told once when I joined a volunteer fire department that “ We're not a surround and drown department.” However that's all I've seen recently from police departments in accident situations. If six officers arrive at the scene, six officers will stay on the scene. All this really shows me is an extreme lack of leadership. I have seen officers directing traffic, but it's almost always in a rural area, and most often it's volunteer firefighters doing it.

OK off the soapbox and on to chemo. By the time we got there I was running about 15 minutes late.When I checked in the chemo people told me I needed labs. Which meant blood draw. I went around to the lab. Waited about 20 minutes to have paperwork done ( you do remember John how the government runs? Ah yes it's coming back to me now. On paperwork. ) then on to the lab which took about 2 minutes. Back to chemo where they said that they wouldn't have time to start my chemo before radiation wanted me. So we left there and went to radiation. About 2 minutes after I checked in I was called back to the checkin desk. They asked me who had told me that I was scheduled for today. After some more conversation they finally figured it out and as it happened they took me next. Now the last time I was there I had asked for something to help keep me calm during the first few treatments to get me used to the idea of being clamped down. Their idea of the best med was Xanax. I have mentioned it before but it bears repeating and don't think I haven't told anyone that I thought would listen. I have a high tolerance for pain and a high tolerance for drugs. ( Of course I still don't know how this chemo will affect me.) The recommended dose that they had prescribed was 2 ½ Mg. All I can tell is nothing. It did absolutely nothing and I was about to holler uncle when they came on the intercom and said it was over. Not a second to soon. I talked to a nurse afterward and told them about it. They said they would get back with the Dr. and let me know what to do.( Question: what ever happened to Valium? I know what that stuff does. Or is that to retro? Just curious because I don't have one of those books that Elvis and Michael had to tell them all of the actions and reactions etc.) Then it was back to chemo. And as luck would have it the chemo department was understaffed today. It seems they were supposed to have at least three nurses on staff and today they only had one regular there. They had borrowed the nurse supervisor to cover and I drew her to start my infusion line. Now I know that as a supervisor at some time she probably was pretty good at this, but sort of good was all I was gonna get. She tried twice and couldn't get a line started. Then the regular charge nurse came and got it started. Or so we thought. After a bag of saline was in they hung the poison. I could tell immediately when it started because it stung a little. About 10 minutes or so after it started I looked at my arm and there was a large lump at the infusion sight. They immediately stopped the line and went back to my left arm that had been stuck three times so far. Now it was going to be four. But it seemed today that the fourth time was to be the charm. We finally finished at 5:00 PM.

Thankfully the trip back to our temporary home was short. I had slept most of the day away while waiting for the infusion to be over and I would have thought that I would be ready to jump and run around. But as I stepped out of the truck I found out that was not to be. I was a little dizzy and sort of weak. Breakfast had been a long time ago so after we got settled I started eating. And since I knew I was supposed to be getting nauseous later I figured I better get as much in me as possible while I could.

More later. Gotta see if I can find WiFi and get this posted.

Testing 1 2 3

Mon Mar 24

Went to radiology today for my dry run. I gotta admit, that mask is more than a little bit freaky. My mind has a picture of Wes Cravens scream mask being stretched over my head just before they tie me down and turn on the machine that lifts me up to the ceiling and the lightning bolts come to light me up and vaporize me. And it doesn't help that your not only clamped down from the shoulders up, but your hands have a strap that is attached to a board that your feet are pushing away. When the technicians step out of the room to do their thing there is an overwhelming feeling of aloneness and being trapped. You know that they are only 20 to 30 feet away and can hear you, but it really doesn't help.  After a short talk with the Dr. he said he would give me something to help me get through the anxiety for a week or two. I can tell that the alien has grown a bit since the mask was made ( 18 days, I did the math so you wouldn't have to ) because I had to turn my head a bit to get the mask on. I was supposed to start this mess tomorrow, but the Dr. said that some physics geek has to program the doohickey in the whachamacallit. That's their technical term, not mine. So, I await their phone call.
 We left the hospital and checked on a couple of RV parks. Some friends of ours have let us borrow their trailer for the time that I'm going to have treatment. This will allow us to have to drive only about 14 miles instead of the 75 miles from the house. And since treatments will be Mon. - Fri. for about 7 weeks, that's a huge savings in gas and time. Not to mention a total of about half an hour of driving as opposed to 3 hours. And that will be even better as this moves forward since I'm sure I will turn into even more of a grump than usual. The RV park is supposed to have WiFi so I should be able to let y'all know what's going on.

Fri. Mar. 28
 Woohoo, they called this afternoon to say my treatments will start Mon. morning. It's not that I'm excited, it's just that I'm glad to finally have a start date--- which means I now have an ending date. This should be May 14. I have to be at the hospital 8:00 Mon. morning to start chemo and then at 9:30 go to radiation. Then it's radiation every day. Chemo again somewhere around Apr 21 and again at the end.

I'm going to post this now to let my followers know. The next post will probably be other ramblings till I get settled into treatment.

He's baaaack ( well, sort of )

    I was chastised this weekend about not posting. It seems I have a stalker. So to keep them at bay you will now be subjected to the randomness of my mind. Or more correctly just some stuff I write at different times through the day.

 Well, no news is generally good news. And as it happens I don't have any news at all. So you're going to have to put up with more of my ramblings.

Mar.17

 A long weekend evidently was not just what  I needed. After many false starts we finally got there around 9:30 PM. Not the optimum time to arrive to unload a lot of the stuff that has to be unloaded as soon as you arrive. Refrigerated stuff, fresh foods, clothes, etc. And the next day in the wind trying to unload paneling that’s going upstairs. Several of the things that I wanted to get done required physical efforts that I seem to no longer have. The cancer is in my right lymph node in my neck. The mass has grown enough that it’s visible to anyone looking directly at me. It is non operable simply because of where it is. It runs over, under, around, or through arteries, veins, nerves, and I can’t remember what else. The jist of it is that it surrounds the nerve that controls you being able to pick your arm up over your head. So when I’m trying to run wire overhead normally I would pass it from one hand to the other. Now I have to push it up with my left hand and try to hang it there until I can move and grab it again. I know, big deal. But six months ago I could still do that. I’m finding things all of the time now that are either harder or just not possible anymore.

That being said, the north forty is as much about disconnecting from civilization and media in almost any form. In Tex. we’re one block from police, fire, ambulance, and within two miles of either of two Care Flite landing zones. We have every media and communicating device one would really ever need. In Okla. we have a radio, if we ever take the time to hook it up. We have a TV, it’s only connection is to a DVD player, and that’s only been used about four times in a year or so. The closest paved road is two miles and the closest Wal Mart is over twenty. At night you can hear the train honking 25 or more miles away, as well as coyotes, frogs, crickets, owls, etc. And the last time I saw that many stars at night I was on the road to Alaska.  Up there I’m able to take the time to notice nature.

 My frustration right now is that although the place is livable Teresa is afraid if we move in, the rest of the drywalling won’t ever get done. Actually she knows that it will all get done, but the schedule would get sort of drawn out.

Big But time. The big C has put what we used to call the cohetus  ( ko-heet-us ) on that process.  It’s a colloquialism for an abrupt stop. No sense in trying to move to Okla. when I’m going to have to go to Dallas every day for seven weeks or so. And not knowing how long my recuperation will be leaves the timeline in the ozone. Add to that that moving would cost money and since I'm not working now, well you get the picture. Mine is of Bullwinkle telling Rocky to watch as he pulls a rabbit out of a hat. Oh well, c'est la vie.

Mar.22
  Spent the afternoon and night at my brothers place. It gave us time to catch up and visit a bit. He sent me home with an assortment of booty. BBQ, computers, ceiling fans, and a borrowed router table.The router table is for some woodworking projects that I have. The ceiling fans will go to the north forty and the computers I'm going to clean files off of and give to a charity and a veterans museum.


  Gonna post this and try to get started on another one sooner.

Good news, you're not gonna die (but you might wish you could)

 I went to the dentist yesterday and as I suspected it was over an hour wait to sit in the chair for two minutes. The Dr. looked inside my mouth and said “ Uh huh. Yeah. Looks good. You can go now.” This was the Dr. that had done the oversewing of my gums. You would think that they would remember someone that they had tortured, but no. I kept my cool and asked him how long it would be before I could get my dentures and he said about six weeks. Oh goody, just about the time I’m through with chemo and radiation the dentists get to torture me again. Although I’ve been through that particular bit of torture before. “Here sir, put this shovel full of cold goop in your mouth until it sets up.”  The trick to that is to lean forward so it doesn’t run down the back of your throat.

On to chemo. After they took vitals, and after a two hour wait we finally got in to see the Dr. He said the chemical that I would be getting is Cisplatin. This seems to be one of the original chemo drugs. You know, the one where you lose all of your hair and puke till your toenails are in your throat. Hmm, I was seasick once, is it anything like that? Don’t know, everybody is different. But we have a pile of other drugs we’re gonna give you to help you feel normal. Uhh, yeah. No teeth and no hair and puking for days at a time. Yeah, that’s pretty normal for me.  NOT !!!   For anyone that's interested google Cisplatin. It's full of nasty news.

 Well, just gonna hafta see how that all plays out. I still believe that God has other things for me to do and I’m going to have to stick around to see what that is. This is not something that He put in my way, but something that has just happened. We are given free will and evidently so are diseases. You can do things to hasten the end of your life and you can do things to extend your life. But Jim Fixx was doing all of the things he thought was right and his heart exploded. And I’m sure we all know of people who do everything wrong and still keep getting everything. The world isn’t fair and you’re just going to have to get used to it. 

On to other things.

Getting used to not having any teeth is a bit more of a problem than I had originally thought. The problem aside from having to relearn how and what to eat is that the teeth locate the jaw. That is they give you a point of reference of where to stop closing your mouth. With no teeth you don’t have that point of reference anymore. Your lower jaw will now go further towards shut than it used to and trying to find that point where it used to be is a little disconcerting because you get the feeling your mouth is open like Bubba in Forest Gump. You feel like when you’re talking all that’s coming out is blah blah blah. And I mean literally that. Kind of like a baby discovering new sounds going ba bab ba bub blah. It gives new meaning to the term motorboatin’.  What I feel that I need is some sort of dental appliance that is soft , pliable, and hygienic  that helps to align and locate the jaw in the position it should be in if you had teeth. It should have grooves of a sort in it so the gums would have a place to sit. Mostly  I need this thing to sleep in. I have woken up after having worked my jaw, supposedly talking to someone in my sleep, with my jaw slightly sore because my jaw is now able to close further than it did before.  So dental appliance inventors get busy.

  An FYI for my blog followers. We are heading to the north 40 today and will be incommuncado  until Monday at least. There is almost no signal there. You have to leave the phone in the window to get a text. I have actually made a phone call there, but you have to stand on the second floor landing to do it.Kind of reminds me of the guy that stands on the roof with the antenna in his hand doing different yoga poses trying to get good reception on the TV. But it's quiet there (except for the coyotes, frogs, etc.) and gives you a lot of time for introspection. Oh yeah, I forgot to mention. The north 40 doesn’t have a land line, internet, or TV, so it’s just us.

 Till Monday then.

Diet and random thoughts

  Before I go on I should warn readers that I've been known to ramble. I'm hoping that by the time it gets to print I've filtered out the stuff that would make it too wordy.That being said when I was growing up my mother used to jump from subject to subject and the only warning you got was "puddle jumping". This phrase was your key to the fact that the conversation was about to make a turn, and you needed to pay attention to be able to keep up. I tend to wander in my conversation and so my writing. And wanderers usually don't signal their literary turns, so to speak.

               Wander at your own risk  !!!

My new diet

I have to admit that some of my latest diet is based on a lot of cream. And I really like cream. Years ago I lived out in the country and bought my milk direct from a dairy. If you timed it right with the giant vat that the milk was in, you could get your milk right when the cream was rising. Many is the time that we would have a quart of cream in a fresh gallon. And it was really fine with me that the kids weren’t all that much in love with cream. So I always had plenty to put on my cereal. We made ice cream and butter with it. So, what I’m trying to say is, I LIKE IT !!!

Now, that being said, the guys that hire on at a certain ice cream company are told when they hire on, that they can eat all of the ice cream they want.  I’ve talked to them so I know it’s true.  The thing is , YOU CAN ONLY EAT SO MUCH !!  I really like chocolate, whiskey, and sex. But there is a limit. Admittedly I have pushed the limits here and there, but with all of my study  (and I’ve done a bunch) there’s a limit to all of it. I’m supposed to be eating cream with everything. Mashed potatoes, gravy, milkshakes and I don’t know what else. At some point you want to have it like it used to be. Without. And to me that is like telling someone you don’t ever want anything chocolate near you ever again. I know that it’s to keep weight on me and that it’s for my well being.

 Enough about cream. Every other day or so we’re finding something else that I can eat without too much trouble.  Chopped barbeque sandwiches. Man I’m here to tell you that was a good thing. To learn that I can still have barbeque briskit even if it is chopped. Other things that I can eat now have to be cooked to a fare-the-well. Black eyed peas, pinto beans, and potatoes. No more steamed vegetables, now they must be boiled until “they yield from light pressure” which means I have to be able to mash them successfully between my tongue and the roof of my mouth. The other day I had some limited success with a McDonald’s breakfast burrito. Since these are about the only thing from the Golden Arches that I can stomach anyway I’m sure that Mickey Dee’s corporate was watching as we drove up and told whoever was on the line to make sure that the tortilla was extra fresh. OK probably not, but I was able to get most of it down in thirty minutes. That seems to be the magic number for how long I will work at something before I lose interest. I know that as my mouth heals more this will change and as the radiation treatments make it difficult to swallow it will all change again. For now I’m taking this one day at a time. Mostly because that’s all I can do. If I could control the situation I never would have allowed cancer into my body. But no one knows what their life plan really is. You can have goals and ideas of what you want to do in life. 

 I need to take a moment to send my undying thanks to all of those who have and continue to pray for me. There may be some out there who get this disease and feel like they must run their gauntlet alone. I am NOT one of those. Although I tend to be a bit of a loner at times, this is not something that I think anyone should attempt to do alone. Not because you don’t have the ability, but because these people want to carry some of the burden. Usually for me this is just being there and listening to me unload about how horrible my experience was with the dentist. I am still capable of lifting a full water jug. So far. But I can tell that prayer has lifted me up on days when it’s too icky outside. My one salvation from partial insanity is to go out back and work in the shop on one project or another. When the weather keeps me from going out to play, so to speak, I’m left with the TV or the computer. And yeah, we have over 500 channels and there ain’t a dern thing to watch. Well, truth be told, a lot of it I’ve seen years ago and I wasn’t that interested in it then. Then there is the computer. And I like many, many thousands of others I have several solitaire games on it. But there are only so many games you can play before you go cuckoo for cocoa puffs. I don’t profess to be a writer but this thing is a really good sounding board for ideas and such that I wonder if they’re ready for prime time. I’ve written one short story and sent it to a friend to edit it.

 Oh yeah, prayer. Sorry my mind has always had the tendency to wander ( told you ) and this has not helped at all.  I firmly believe in the power of prayer. I know that I have an awful lot of people pulling for me. And I truly believe that I have things left to do on this earth. It’s just a matter of getting from here to there. 

 Most of my friends have heard the story but it bears repeating. For those of you who have heard it, skip forward to the next paragraph. Paul Harvey, a broadcaster on both radio and TV, talked about a study done by a university about the power of prayer. It was done on three groups of plants. Group 1 was the control group and absolutely nothing other than water and light was done for them or to them. Group 2 was prayed over daily along with water and light. The prayer for them was simply to grow well and strong. Group 3 was prayed over daily along with water and light. The prayer for group 3 was " Thy will be done".  One guess as to which group did the best. Thy will be done. And I have to say that over the years when I've been smart enough to turn a decision over to God, no matter what happened I always knew that it was for the best.

 Well, I said to skip forward so here's the next paragraph. Unfortunately  I've run out of stuff to say.

Wed   Mar  12  2 appts. in Dallas

Mon   Mar   24  Start radiation treatments

The Mask

 Today I was fitted for the mask. It was probably more boring than anything, but it would have gone a bit easier on me if there had been some Valium involved. I don’t know what anyone else’s experience would be, I can only tell what mine was like. First I was asked to take off my shirt and lie on the MRI table. After positioning me on the table they put some paper material bags on my hands and fitted some restraint type devices on my wrists. The bags were to keep the straps sanitary so that they can be reused without having to sanitize them before the next patient. The straps are connected to a footboard of sorts that when you extend your legs it pulls on your arms and straightens out your shoulders. I had an image in my brain of some sort of torture table. Hopefully that will be way off base. After a bit they come over and adjust your head, arms, pelvis or whatever until they’re happy with your position on the table. While this was going on they had been putting me in and out of the machine to check alignment with some red laser pointers. After they are completely satisfied with your total alignment then they put this piece of warm wet plastic mesh over your face, clamp it to the table and tell you to be very still. Now I haven’t mentioned this before, but I’m more than a bit claustrophobic. The MRI’s don’t really bother me because they are short enough for me to see the end. But restraining my head in any shape, form, or fashion and I get more than just a little bit freaked. By this point you’ve been told to be still about a dozen times ( but this time they REALLY mean it). The mesh hardens as it cools but since it’s on your face it takes a bit. It’s not really bothersome until it starts to cool and that’s only because the drops of water have cooled in the 60 degree air in the room. The room is kept cool to keep the machine cool and patients and technicians alike just have to deal with it. Once the cool drops of water move even a millimeter the urge to do something can drive you crazy. Here is where you need to have a happy place or a mantra or be able to zone out or something. Again if anybody’s listening, Valium or something similar would be really helpful here. You can hear and repeat to yourself all day long to be still. Ain’t so easy when your mouth fills up with saliva and you need to swallow or drown. Sometimes you can count your breathing, but usually for me all that this does is cause me to pay attention to my breathing and then I have to talk myself out of freaking out about that if I don’t pay attention I might forget to breathe. And I know that can’t happen, but it’s a thought that’s really hard to get rid of.

 Several times throughout this they have made reference marks on my forehead, nose, and chin. The mask has been clamped to the table to insure that when we get to the actual aiming of the glow in the dark machine that it is 100% on target. Before they cut me loose they made several reference points on the mask itself. As I’m about to get up they say they have one more reference mark to make. This turns out to be a permanent mark on my chest. A tattoo of sorts. It’s very small, but I’m told very necessary to attain perfect alignment.

 We also got news today that treatment starts in two weeks. The tentative date is Mar. 24. And in the meantime I have a slew of other appointments scattered in the calendar.