Thoughts from a professional patient

This Friday I  have an appointment with an oncologist.  A new one.  I already have several oncology specialists in my corner but I guess one more can't hurt. Right?  This particular appointment isn't really a big deal, its simply to determine if my Immune Globulin level is low enough for a immune boosting transfusion.  Immune Globulin???  There is a phrase that I never imagined myself knowing or even reading for that matter.  But, the last 2 + years has given me quite an education.  If you are unfamiliar with my story check out this post (October 10, 2010 Speech) Today, I am a cancer survivor and a professional patient.

What is a professional patient?  I think this definition can change from person to person but for me the following 5 things are particularly important:

1. I know where to find snacks and water in any doctor's office.  Even in a new place with a new doc I can sniff out the munchies that will insure I'm in a good mood (not grumpy and hungry) when I meet with the doctor.

2. I know which medicines to take at what time and how much.  This information has changed over time but my desire to keep track of it has remained steady.  I have never allowed a nurse or a doctor to hand me a pill to take without first getting them to tell me what it is and what it will do.  I do this even when it is the same amount of Tylenol that they brought to me 4 hours before.  I also check my own pills at home.  Once a week I refill my "granny box" and although I could probably do it with my eyes closed I still read every label.  Better safe than sorry.

3. I very rarely wear paper clothes or over sized hospital gowns.  I actually have a "hospital wardrobe".  These are the yoga pants, t-shirts, and underthings that I know do not have metal tags or zippers.  These clothes are comfortable, clean and totally appropriate for x-rays, CT scans, PET scans and MRIs.

4. I ask an annoying amount of questions.  I worry too much and want answers to even the silliest of things.  For example, I recently stubbed my toe so badly that I nearly cried for an hour.  The pain actually took my breath away.  As soon as I was able to get on the computer I sent an email to one of my many oncologists to be sure that a stubbed toe wouldn't be a problem with my new immune system.  He laughed at me but also answered the question, "Toe might be broken but your immune system is fine."

5. I know that it is ok to have a bad day.  I can have a bad day.  My doctors can have bad days.  My nurses can have bad days.  It is just better when we try not to have them at the same time.

There are probably a million other things that I could add to the list but this seems to be a great start.  If you find yourself in the position of professional patient keep these things in mind and remember that your list might be a little different.  I'm off to make sure that one doctor has not forgotten to submit a referral for this new doc...wish me luck!

Best,
Elizabeth

Post-Vacation Energy

You all know the normal post-vacation feeling....you return from a week away, relaxing and enjoying yourself, only to discover that you are now exhausted and hardly ready to return to the "real world".  Whether its the final travel that does us in or simply the shock of coming back to reality, it is often difficult to re-enter.  Well, we returned late Monday night from a great vacation in an unnamed southern state...basically a week bike riding and beach going with a little golf and shopping thrown in for good measure.  Oh, and a whole lot of food!  Enough food, in fact, to cause my WII Fit to tell me I'd aged several years in just a week.  Anyway, for some unknown reason I have returned from vacation with a great deal of energy and an amazing ability to make AND complete a list of tasks each day.

I've always been good at making the list but not so good at crossing things off.  In fact, I have even been known to add things to a to-do list that I've already done just so I can feel good about crossing something off!  Somehow, even though we didn't arrive home until Monday night at around midnight I seem to be able to stay up a little later and get a whole lot more done. 

I'm not entirely convinced of the point of this post except maybe to recognize a change in myself.  Its been a long time (a little over 2 years, I think) since I have really been able to focus.  My memory is still shot but if I keep my handy notebook and calendar at my side, I just might be able to accomplish some big things!  Here's to trying!