My Olympics

In the midst of the 2012 London Olympics here is my version. The opening ceremony was on too late at night. I did not want to spend 5 hours in front of the television watching it until midnight. It would also interfere with my regular TV viewing. So I took the easy way out and DVR'd the opening ceremonies that were aired about 2 am.

Saturday morning we went to watch the history-of-England-set-in-Bag-End-with-deatheaters-highlighted-by-Mr-Bean-and-Paul-McCartney misery. I was really looking forward to the parade of teams coming into the stadium but it was trimmed from Bosnia to Uruguay or so with all the other countries cut out. Wah! I could have skipped the Harry Potter visits Bilbo Baggins and watched the other countries. I should have recorded the other version.

Then began the men's swimming and water polo where very fit healthy people accomplish feats that I couldn't do when I was healthy in Speedos. I convinced my husband to watch the Olympics when the women's beach volley ball came on proving his California background by commentating for me. Yesterday I skipped most of it (so I could go to the beach) and caught up with the morning news. I will watch tonight to get the women's gymnastics teams. Don't laugh but I wouldn't mind seeing the synchronized swimming and rhythmic gymnastics at some point.You never see them anywhere else.

I admit I am looking forward to the end of the Olympics all ready. I wouldn't mind seeing some more but they go on for more than two weeks. I just admire the athleticism on all their part.

The 'poor me' attitude

With all my ailments (but I really am a healthy person) sometimes its hard to avoid the 'poor me' attitude. I hate using all those words like surviving, battling, fighting, blah, blah, blah. But some days nothing goes right. There can be one of those fun medical adventures with the wrong results or something new decides to crop up or return or I simply get up on the wrong side of the bed so to speak. (Which one is the right side and which is the wrong side - I have never really understood that one).

Anyway some days its hard not to get dragged down into the 'poor me' crap. I do not use the oh-so-insensitive terms of survivor or warrior or whatever. I am a person living with cancer and a bunch of other medical ailments.

This poor me business can also be helped along by the 'well intention but clueless' who ask things like 'and how are you feeling today?' or 'what does your doctor say now - are there any new treatments?' or 'I would have thought they would have cleared that up by now' or 'will that never resolve on its own?' I try to avoid those people.

I know people mean well but sometimes they really do not understand at all. I have many things which cannot be fixed - lymphedema, back pain, bursitis, two cancer diagnoses - that I am stuck with so you don't need to remind me thank you. Your poor attitude is infringing on my life. May be its 'poor you' instead.

Better late than never

Last winter I was approached by Tory Zellick, the author of "The Medical Day Planner" asking me to review it and then make it available to people at the Center where I work. I said I would because I had plenty of time. The book didn't show up when promised and my life got VERY busy for several months. In the midst of all that the book showed up and as I was busy I put it aside - like every non essential thing in my life. It got lost in a pile of books to deal with.

Finally I rediscovered it and said to myself "oh crap I did say I would review it didn't I?" Then yesterday Ann, over at But Doctor I Hate Pink reviewed it and started a contest for a copy of it. I started to feel like a slacker and the guilt piled on. So here is my review:

One word: wonderful. One request: everyone should be issued one of these at birth.

Seriously. I looked at it and said why don't I have these records of my entire life? I have chemo brain and have no idea. But if I had had this book issued at birth and kept it up to date I would have known.
It makes me want to go back and put in all the information I have on my medical adventures - but I think I might need a second or third copy before running out of space.

My mother used to keep a file on each of us children full of useful things like birth certificates, doctor notes, immunization records, and report cards. I have no idea where my folder is now. I may have it or she may still. I have kept diligent records over the last five years of every medical expense (for tax purposes), appointments, and medications. I have a folder which is labeled "Current Medical" that has my recent test results. I know who all my doctors are and how to reach them - most of them conveniently are at the same hospital where my patient number will unlock the piles of information on me.

I could have used one for my husband as well. He doesn't remember his medical ailments and what he has done either. He did have some medical adventures a few years ago that could have been very nasty but ended up with good results. I wish we had written all that down then as well. Actually he doesn't know it but he has a little section in each of my medical appointment and expenses list so I can track that part of his as well.

But back to the book, unless you are perfectly healthy go buy a copy. If you have never had any ailment - even the common cold - you don't need it. But since we all have had the common cold we all need it. Get a copy for your spouse and each child as well.

It is conveniently broken out into useful sections - patient information, phone book, medication appointments, treatment, procedure history, test and scan history, hospitalizations, notes, and day planner. I'm not sure if a one year day planner will be helpful to me but all the other sections are incredibly logical and useful. Some things would be written in pencil to be erased and updated but others could be indelibly etched in ink.

So what are you waiting for? Go buy a copy!

My incompetence has reached new levels

I am a mental midget sometimes and I am very aware of this. I know I am incapable of somethings without assistance. There are many things actually - parallel parking, dealing with crawly things, opening new bottles, reaching tall things, understanding the things under the hood of the car, and the list goes on. The biggest one on the list is taking my pills properly. Yep, I have counting and memory problems.

I clearly can claim chemo brain but that is only good for the past 4.5 years of my life. Prior to that I took my thyroid medication daily for 2.5 decades. I started having those little conversations daily with myself - 'did I take my damn pill?' I was probably 80% accurate at that point. Then I discovered the joys of the daily pill box where I could combine all my pills into little daily segments easily compartmentalized. Then I was told I could not take my thyroid pill within three or four hours of my calcium pills and it had to be taken 1 hour before eating. Then things started to get complicated.

I started adding more pills - more vitamins, take calcium three times daily, take some pills at night and some in the morning an hour after taking my thyroid pill. This has varied over the years. I had two pill boxes for a while. One for morning and late morning and one for evening. My current configuration is one pill box with two little pills to take inthe morning and then take the rest sometime between dinner and bed.

This system works well if I sit down on Saturday afternoon surround by four prescription bottles and five vitamin bottles and one OTC medication plus my husbands additional prescription and extra vitamin. If I do not sit down on Saturday I have to do it all when I am groggy on Sunday morning so I prefer the Saturday option.

Last Saturday I forgot. Damn. Sunday morning I realized this upon waking up. I grabbed my two prescription bottles that I needed to take. I know I took one but can't remember if I took both. Oops. Wednesday morning I realized I forgot to take Tuesday night's pills. That happens. I have lived through that. Friday morning I realized I was some how on Saturday pills. Friday's compartment was empty. I have no idea. I must have taken a double dose - including the morning pills for Friday at the wrong time.

Now it is Saturday morning and I just took my two prescriptions out of their bottles because I took Saturday's on Friday. But I still have pills to take  tonight. I meant to take Tuesday's pills last night but forgot. So I am a day behind on some, a day ahead on others, and maybe equal on one. But I didn't kill myself (so far) by messing these up. I did have a day this week where I was incredibly sleepy so maybe that is when I double dosed my self. One of them has sleepiness as a side effect. If I miss a day on all of them its okay. Double doses are not a good idea but okay. But if I double dosed and then forgot I am even.

So maybe we will had management of prescriptions and other medications to the category of things where I am incompetent.

Telling your story

I know I have blogged about this before. You are the only one who gets to tell your cancer story. It is your body and your life and the one thing you get to choose is to whom you tell your story and when. This is a big red flag for me.

Recently this became clear. One person was ready to make an announcement with the best of intentions about another person and included their cancer story in it. The person who it was about was not happy about this. They had been purposely keeping their cancer story private because they did not want their employer to know. So the story was rewritten with out the cancer story in it.

Another time one of my neighbors who I don't know very well - just because our paths don't cross - saw me outside and came rushing over and starting asked me if I was doing okay or not obviously referring to cancer. One of my other neighbors must have told them. I don't know what was said but obviously they thought I was dying or something.

No one can tell anyone's cancer (or other icky medical diagnosis) story but the person with the ailment gets the privilege of sharing or not. So everyone else just bite your tongue.

The FDA isn't always the bad guy.

We like to think of all the alphabet government agencies as the bad guys. They are the big brother that is overlooking everything we do, think, eat, wear, breathe, etc. But maybe this time the FDA is not the bad guy.

There is a massive problem with shortages of oncology and anesthesiology drugs in the US. Most of them are related to manufacturing problems when they are shut down for failed FDA inspections. Others have tried to claim that the FDA doesn't concern themselves with potential shortages when they cite manufacturers but that is not the case. The FDA tries to work with the manufacturers to prevent shortages and tries to get substitute drugs that are manufactured to US specifications overseas.

So where does the problem lie? In an aging manufacturing infrastructure. Hmmm.... so the same people that charge upwards of $10K per dose cant keep their manufacturing facilities up to par? I fail to sympathize here. They are supposed to be saving lives not killing people with defective drugs.

Pre-existing condition exclusions

Here is someone who has never had a preexisting condition:

"And I believe my state of California has a structure in place to deal with pre-existing conditions. It’s a pooling process, which I think is one worthy of consideration, because while I don’t that think someone who is diagnosed with a massive tumor should the next day be able to have millions and millions and millions of dollars in health care provided, I do believe that there can be a structure to deal with the issue of pre-existing conditions."

He is State Representative Dreier (R) of California. I'm glad I don't live there. Apparently if you have a tumor, you become a non-person because you aren't worth treating. Would that be the fate of these two people? First a little 2 year old boy  had a 33 lb tumor remove and then a 65 year old woman has a 51 lb tumor removed.

I hope this leads to his political down fall. First of all to make such a blanket statement is ridiculous. Not all tumors are cancerous that will require expensive and long term treatment. Second each person's life is valued equally. All have their rights to choose their medical treatment. Third I can't think of a third because I am too flabbergasted by the whole thing.