Medical Journal Format

Since shortly after I was first diagnosed in 1992, I have kept a medical journal for myself, then for my mother and father. Others have expressed interest in it so I have decided to post my format. If I had the knowhow, I would like to write a program to use it with a program that could be used in a Palm type device and sell if you US$19 a copy. But here is the basic outline of my hard copy version.

• Personal Information
  
  
  • Name
    
  • Address
    
  • Phone Numbers
    
  • Birthday
    
  • Know allergies and associated reactions
    
  • Blood-type
    
• Emergency Contact Information
  
  
  • Name
    
  • Address
    
  • Phone Numbers
    
  • Authorization(s) (Health Care Surrogate, Power of Attorney, Living Power of Attorney, Living Will)
    
• Current list of medications including nutritional supplements and alternative medicines
  
• Current list or doctors with addresses and phone numbers
  
  
  • Primary Care Physician
    
  • Neurologist
    
  • Oncologist
    
  • Neurosurgeon
    
  • Internal Medicine
    
  • Infectious Diseases
    
  • Dentist
    
  • Ophthalmologist/Optometrist
    
  • Ob/Gyn
    
• Past Medical history
  
  
  • Childhood illnesses
    
  • Past surgeries
    
  • Past major illness
    
  • Miscellaneous medical information such as dental care, vision, or hearing issues.
    
• On-going Medical Journal Entries
  
• Questions and Answers
  
  
• Primary Care Physician
  
• Neurologist
  
• Oncologist
  
• Neurosurgeon
  
• Internal Medicine
  
• Infectious Diseases
  
• Dentist
  
• Ophthalmologist/Optometrist
  
• Ob/Gyn
• Appointments
  

Hope this is helpful to everyone.

I have been a fan of Aimee Mann for several years now.

She is wonderful!!

An Unevent Full Day

Friday and Saturday were not very spectacular days but full of activities.

Most of what I did was on the Cancer Forums. That does take a lot of time. Of our current 16,000+ members, only about 25% have posted at least one message. I am sure that number will be more like 10% if my helpers and I did not delete so many of them. I personally delete at least 50 a day because they contain links to pornography or are advertizing something. I cannot understand how they can register without actually having a human being do the registration… at least part of the way. The last step in the registration process is to enter a certain combinations of letters and number that are masked so that computers are supposed to not be able to read them. I guess as long as there is cheap labor somewhere in the world, there will always be people to enter that code.

The bedroom refinishing project has entered its final phase but its slowest phase as well. I am trying to find wall decorations and furniture for it. Unfortunately, I do not have money to buy any new items. I do have plenty of old things I can use. Unfortunately, there are not up-to-date with the Home Network standards.

I did my monthly grocery shopping on Friday. Fortunately, everyone was across town at Wal-Mart and not on this side of town at Kroger's so the lines were about normal for a Friday evening. I was out of so many basic things that I did need to spend a lot of money. However, I might not have to go to the grocery store again until mid December.

The small stain glass project is now done. All that I need to do is clean off is glass. I am having second thoughts about selling that equipment. It is a possible way for me to make some of the objects with which to decorate the house. I don't know… maybe that is the manic side of me thinking that I can do that too. I know that I can do the stained glass work. The real question is: "Will I?"

Netflix has a feature that I enjoy; I can watch movies instantly rather than waiting for them to arrive in the mail. I took advantage of that feature Friday night and watched the biography of Thomas Merton… one of my spiritual guides. The movies are not first run movies. To see anything close to current I still have to wait for the mailman.

I backed a couple of pumpkin pies and took one over to my new neighbors as a "Welcome to the Neighborhood" gift. They seem to be a nice family with two middle school age kids. Of course, they do make more noise than Mrs. Mary. Since the side door to their house is just 30 feet from my bedroom window, noise may be an issue later next year when they spend more time outside. Hopefully it will not be a problem.

Anyhow, as you can see, I had much to do but little to write home about. Fortunately, few people visit my blog, hehehe.

I listened to Aida today on PBS. This clip is of Luciano Pavarotti singing a part of that opera. Of course, Pavarotti died earlier this fall of Pancreatic Cancer.

Happy Thanksgiving

This is the first Thanksgiving were I am totally alone. Last year, at least some of my siblings were here for part of the weekend. Dad had died just two months before so we gathered to divide the personal property and to talk about what next. It is not just being alone that I have to fight… it is also being lonely.

I was fortunate to have Elizabeth, Earl, and JP stop on their way to Earl's parent's home. I meet them at the restaurant at the intersection with I-65 so they could eat a Thanksgiving dinner with me and for me to hold JP. He is 4 ½ months old now and he has grown so much. I held him all through the meal and did not want to give him back for them to leave. That was my Thanksgiving J. I am very thankful that JP is part of our family. I do feel blessed.

Thanksgiving has always been my favorite Holiday… at least since I returned to the US. I owe a lot of that to Connie's parents. They adopted me when my parents were still in Brazil. I do love them even if I am not married to Connie anymore. I remember the Thanksgiving morning tradition of going "hunting" with Paul (Connie's father). The Fall weather in Western Tennessee is so nice. We usually just walked, hoping that the dog would flush out some doves for Paul to take a shot at. I remember him shooting his shotgun but, to my knowledge, he never killed anything. Then, we would drive around a little before going home.

By the time we got back, the women were a hubbub of activity in the kitchen. Uncles and Aunts, siblings and cousins would start to arrive throughout the day. There was always the visit to "the other side of the family." Most often, we ate with Joyce's family and visited with Paul's. We would get together with them later in the weekend to eat again.

HAPPY THANKSGIVING TO EVERYONE

Update On The Remodeling

I finally finished painting the room. I still need to clean the carpet and move back the furniture. In fact, this could be the hardest part of remodeling… deciding how to re-decorate the room. Do I put a new border? What pictures do I put in there? What about curtains? These questions and many others like them are not my strong suit. Plus the fact that I am very limited financially means that I have to make use of the items I already have. But the curtains really do need to be replaced.

Here are some more lessons for the rest of you first timers.

• One can of primer and one can of your tented paint is cheaper than two cans of tented paint.


• Corollary: Two coats of a cheap primer are better than one coat of expensive primer. This might take longer. However, you will not regret spending the time and effort… especially if you are painting a dark room a lighter color.

• A sheet of plastic drop cloth is cheaper than repainting a bed or replacing carpet.
  
• Use one roller for the primer and one for the tented paint. Two rollers are cheaper in the long run than trying to wash one roller. You will never totally clean the roller anyhow so why not start fresh?
  
• A role (or two) of blue painter's tape is easier to apply than repainting the floorboards or window/door frames. However, as I learned, the tape CAN and DOES pull off the paint. I do not know if I did something wrong. Maybe the wood was painted with the wrong type of paint originally. I know that some paints do not adhere to other types of paint. Nevertheless, I ended up pulling off a significant amount of paint. In a previous life, I would try to paint the wood again. However, I think I will wait until at least after my Christmas guest leave.
  
• A second person to help is cheaper than a trip to the Emergency Room. If you have problems with balance, do not try to paint using a step stool or a ladder. Get someone to help you or at least someone to call 911 for you. I was just lucky. More than once I almost fell because of my balance problem.
  
• Corollary 1: Maintain three points of contact at all times (two feet and one hand or two hands and a foot). I learned this at a COPE class one summer at Boy Scout Camp with my son. Of course, in that case, one of our points of contact was the rope holding us up.
  
• Corollary 2: A wet, freshly painted wall is not a good choice for any of your points of contact unless you like paint on your hand and just needed to paint that wall again.
  
• Corollary 3: A ceiling can help you maintain your balance unless you have just overlooked what I said in Corollary 2.
  
• Two cans of primary are cheaper than one can plus a trip back to the store to by a second one. Most cans of any paint list you much you can expect that paint to cover. Usually, that figure is pretty accurate if you calculate the square footage right and add 100 square feet to the result. The room I was painting was roughly a 12ft x 12ft room with 8ft ceilings. Therefore, I was painting 384 sq. ft of walls. Add 100 to that and you get 484 sq ft. A gallon of the primer and paint I used said they would cover 400 sq. ft. So, I bought two gallons of each. It took well over 1 ½ gallons of the primer and just a little over one gallon of the tinted paint.

Before

After

Back to work on the Cancer Forums for a while.

I am not sure why I like Apocalyptica so much, but I do. I am just amazed at what they can do with Cellos. It is acid rock on a Cello.

It Was a Good Weekend

My weekend actually started Friday morning at 10 am when I got up. I did not go back to bed until Saturday night at 9pm. I did this intentionally. I am usually up most of the night only going to bed sometimes when it is 4 am. Friday, I worked in the room I am repainting. So, I just stayed up rather than going to bed.

Saturday was such a beautiful day! My neighbor and I raked up the leaves in our yards. Unfortunately, half of the leaves are still on the trees, so we will have to do it again. The leaves are so beautiful in the fall, but I am very glad when they are gone.

Saturday I also had to finalize a sermon for Sunday. My Cousin Emily is a minister at a nearby Presbyterian church. When she needs to leave town, she often asks me to preach in her place. In September I had an opportunity to preach. However, at the end of that service I swore that would be the last time I would preach. Some days my stuttering is very bad. That Sunday was one of the worse days. To start off with, I am barely accustomed to the liturgy in a Presbyterian church so I have to read all of the prayers, readings, hymns, and the Apostolic Creed. I could not focus. I stuttered so badly that I am amazed that anyone got anything out of the service. So when Emily called last weekend and asked if I would preach for her, I almost said "No." I did tell her about my speech problem but she told me that the members of her church had specifically suggested that she call me. For some reason, they like me. Go figure.

I worked on and off all week getting the sermon ready. On Wednesday, Emily brought me the bulletin for this Sunday. Friday night and Saturday, I transposed it to a MS Publisher booklet and wrote out every single word that I would need to read or say… including my prayers and sermon. I made the letters much larger so that it was easier for me to see. Then, at 9 pm, I took my medicines and went to bed so that I was well rested. I am not sure what worked (more preparation, more rest, less stuttering), but the service was so much better. Kind of makes me wish I could preach more often.

At church I met this lovely older lady named Missy (or at least that is what everyone called her). I had mentioned their beautiful stain glass windows during the service and that my father had made the stain glass windows for Northside Baptist Church. She started talking about that and that she too did stain glass windows. In fact, she is part of an arts guild here in Columbia that teaches people how to work with stain glass. I asked her if she knew anyone who might what to buy Dad's left over tools, glass, and other stain glass related items. She did and the guy called me and will be coming this afternoon to take a look at what I have. Hopefully, soon all of the glass will be gone.

So, in more ways than one this was a great weekend.

One of Dad's Windows at Northside Baptist Church

Remodeling Day 2?

Last time I told you how I was not going to bite off more than I could chew and just do one room at a time, remember? Well, hehe, it turns out that one room is almost more than I can chew. So far I have worked over 8 hours on that one room. First, I had to take a lot of things out and dump them into other rooms. I cannot even see my bed now. The couch is beckoning me J. I will need to clean it off too LOL.

However, what has taken an amazing amount of time is taking of the wallpaper border across the top of this 12 by 12 room. Let me give all of you "this old house" wanabees some basic instructions. If you think it is an easy task that anyone should be able to do, think again. If you cannot get or pay someone to do your wallpaper border removal for you, here as some suggestions:

1. 
   Don't use the wallpaper glue softener that comes as a thick pasty substance. I have used it in two forms:
   
   




1. The first way this substance is available is in a nice plastic bottle with a sponge roller attachment. It looks like it should do the job and in the hands of an expert it probably does. It looks very tempting. Save your money and move on. The problem is that it turns out to be very messy and it is hard to know when you have applied enough.


2. The second way this substance is available is in a squirt bottle familiar to anyone who has ever done anything do to with cleaner. I found that the instructions on the bottle would best be used if you are working on removing wallpaper that is covering the whole wall. However, it too is rather messy if you are trying to remove just a border


2. Regardless of the type or age of the wallpaper, do not even start without using the specially made tool to punch pin holes into the paper. I thought that since the paper I was trying to remove was not a vinyl wallpaper that I could skip this step. I was wrong.
   


3. 
   I ended up using the second product but had to change how I applied it. I used a wet sponge. I squired the blue gel onto the sponge and then dabbed it onto the paper. By dabbing rather than rubbing I was able to see how much of the gel I had actually applied. Be generous; it will not pay to be stingy.
   
   
   

   One last note about the type of wallpaper glue softener you should us. I did not use it this time but I remember years ago that there was a concentrated substance that we mixed with water at home. That might still be the best way to do the job.
   



4. The instructions on the bottle say to wait 15 minutes. If you do as I did and go around the whole 12 x 12 room at once, it will take much longer than 15 minutes and the paper will be dry as a bone. I found that I could only work on 6 ft sections at a time and I still had problems. I had to reapply the blue gel several times.
   


5. Be patient. It does not pay to rush. If you try to remove the paper too soon, you will separate the top layer of paper but leave a very thin layer of paper behind. While that layer easily absorbs the blue gel, it does not come off it one piece but in many very small and gluey pieces.
   


6. 
   Be sure to wash off the wall after all or most of the paper is off. I did this twice.
   
   
   
   
   
   1. The first time I alternated between the sponge with some of the blue gel on it to soften any remaining glue with a clean green and yellow sponge using the green, scraping side. Again, I worked on 6 ft sections at a time.
      
   
   
   2. The second time, I only used the yellow side of the sponge just to make sure all traces of glue and bleu gel where gone.
      


7. Again, be patient. Allot twice as much time to this talk than you could ever imagine and you might get it done an hour later.

What It Looks Like Now

,

A Great Day To Start Remodeling

Well, I have started. The house has not had a room in it remodeled since before my parents moved in… and that was almost 20 years ago. I am starting slow, which is unusual for me. I suffer for a self-diagnosed bipolar disorder. Usually when I am in one of my Manic periods I take on too much and spend more money than I really should or can spend. This time, I am under medication to help control those swings in my mood. I only purchased to cans of paint and the brushes I need to paint one of the three bedrooms in the house. I will start with the smallest and go from there. Wish me luck.

A New Approach

I have decided to make better use of this blog and not post a continuation of my story on the CancerForums.net. I will still make significant contributions to the CF and stay as active as possible with them. Nevertheless, it is just as easy to post to this blog and will not make my story so dominant of the stories of others. This is at least my current thinking J.

It Has Now Been 15 Years

Well, it is official. I have survived 15 years post diagnosis of Primary Brain Cancer (glioma). I will not lie to myself and say that it has been an easy 15 years because it has not. Especially since the move here in 2003 and the recurrence in June of 2005. I have not been able to find a good job which I can actually do. The damage to my brain has caused me some significant problems: weakness in my right arm and hand, trouble speaking, harder time remembering this, imbalance, and increased mood swings to name just a few.

But I am here. I am not sure why. I do help people on http://cancerforums.net/index.php and I think they appreciate what I do. However, often I suffer from survivor's guilt. I ask: "Why do I live and that father in his late 30's with a baby will die soon?" It haunts me so nights. I stay awake wishing God (who ever that is) would just take my remaining days and give it to someone who would make better use of it.

I did live long enough to see both of my daughters get married, to help me son earn his Eagle Scout rank, and to see my first grandbaby. Of those things, I am grateful. If I live one more year, I will get to see my second grandchild and see my son graduate from High School. I am very proud of me children and the young adults they have become.

I will try to blog more often this year ;)