Hope and smart Doctors

          The clock says 8:39pm but as far as I'm concerned it might as well be 4am tomorrow.  I flew to California last night and despite a great nights sleep in my hotel last night I have already climbed in to bed.  I'm hoping that the time change doesn't mess up sleep tonight, as I'd like to be awake and alert tomorrow.  I'm in California to attend and speak at the Lymphoma Research Foundation's National Educational Forum in Manhattan Beach.  I am very much looking forward to learning about new treatment options and hearing what is coming in the near future for Lymphoma patients.  I am also looking forward to sharing my own cancer story with the attendees.  With a little luck my story will be helpful to at least one member of the audience tomorrow.  One person who is scared or hopeless or unsure of how they will ever make it through.  If I can offer that person a minute or two of relief, than I will have spoken well.  It is unfair that any of us have to endure these diseases or watch our loved ones get sick but we are not alone in any of this.  In fact, we are surrounded by love, strength, bravery, and hope.  And these things along with smart doctors will bring us through. 

First Day Jitters....

Today was the first day of Kindergarten.

My baby girl has grown to the amazing age of five and as a result we put her on the bus and sent her off to school.  She loves it!  She loves everything about it!  The new backpack with matching lunchbox; the Cinderella pencil case; the folder to hold work; the new clothes and shoes; the prospect of homework; the ride to and from school on a "real" bus...the list goes on and on and on.  The bottom line is that mommy's baby is not a baby anymore and her independence and eagerness is shining through.

Mommy hates it!  I hate almost everything about it!  I hate the idea of the bigger kids on the bus; I hate the idea of remembering milk money; I hate that she has to make friends without any help from me; I hate that she will, at some point, have her feelings hurt or a skinned knee and I won't be right there to make it better; I hate that a sign of good parenting is raising a child that is ready for kindergarten, and then middle school, and then high school, and so on.  Mommy hates it so much that I walked home from the bus stop and promptly got in my car to be sure that she didn't get lost at the other end.  I hid behind a bush at the elementary school and while she didn't see me, I could see her smiling face in the right line with the right teacher.

And yet, I love it.  I love every minute of watching her grow. I love how excited she is about school.  I love that she can't wait to learn to read.  I love that she got off the bus this afternoon with stories from the day and an eagerness to go back tomorrow.  I love that tonight at bedtime she hugged me tight and said "Mommy, I love you.  Please snuggle a little longer." 

I will snuggle as long as you like beautiful girl.

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!

2 years and counting...

Yesterday was April 6th and marked 2 years since my stem cell transplant at The National Institute of Health.  On Thursday, the 5th, I had bloodwork done, a PET scan, and a CT scan.  Bloodwork was "perfect" according to my doctor.  And my scans showed continued calcification in the 2 masses of scar tissue left in my body.  For those wondering, calcification is a good thing, a very good thing.  There was a teeny bit of uptake on the PET scan at the bottom of the mass in my chest but seems to be the result of inflammation due to the never-ending cough and cold that I have been fighting.  It was sort of amazing to look at a scan with activity (even a small amount) and not feel panic or dread or even fear.  I wasn't sure that I would ever look at a scan again and not be terrified.  I guess when you trust your medical team as I have learned to trust mine then you slowly, very slowly, learn to keep these things in perspective.  Whatever it is, perspective or time or a combination of the two, it was truly a pleasure to walk out of my appointment with my team and feel really good about my scans.

So, its been 2 years since they put my sister's immune system into my body.  It is still nutty to me that that is even possible!  I no longer have cancer activity in my body nor the reality that I could die very soon.  Instead, I have life and love and unending hope.  I also seem to have "inherited" seasonal allergies but I'm ok with that!

Best,
Elizabeth

A beauty of cancer

I will never tell you that I am thankful that I got cancer.  I simply can not stomach the thought of being thankful for that.  I will tell you that I am proud of the way I handled cancer (most days) and I am thankful for the many things I learned from cancer.  There are, in fact, a great many things that cancer teaches you and a great many things to take away from cancer.  This post is about one of those things and I will refer to it as a beauty of cancer.

A beauty of cancer is the people.  The people you meet along the way.  The people you knew before but step up during.  The people you meet after when you are a new person.  There are the friends, the family, the nurses, the doctors, the radiology techs, the IV teams, the phlebotomists, the lab techs, the aids, the cafeteria staff, the patients, the survivors, and the list goes on and on and on.  I have met people in person.  I have met them online.  I have dear friends who I only know through facebook.  I have met the spouses and parents and children of patients.  I have met people from all over the United States and all over the world.  The people are amazing.

Cancer sucks.  The people are amazing.

What can I do?

When I was sick, really sick, not simply this recent cold that has me dragging a bit, when I had cancer there were people lining out the door and around the block to try and help.  No, there was not an actual line of people surrounding my house but had I asked for one I'm sure that would have been there.  Our line was slightly more amorphous and consisted of countless phone calls, emails, letters, and cards all asking if there was anything that they (the sender) could do to help us.  It took some time to learn to say yes to these offers and even more time to learn to ask for something specifically. 
If I had to do it over I think I might do some things differently:
     I would have sat down all the meal makers and told them about the foods that we, as a family, really enjoy.  I would have told them all to coordinate with each other so that we wouldn't worry that lasagna was coming on back to back nights.
     I would have asked people to yes please, empty the dishwasher and no, don't worry about where anything goes...except the cups they go here.  And when I'm thirsty because I am borderline dehydrated I need to be able to get the cups quickly.
     I would have given up worrying about what the tub looked like and let other people scrub it shiny!
     I would have said yes more when someone offered me their seat even if I didn't feel that tired.  Sometimes its more important to take the seat than not when it comes to making the other person feel a little good too.
     I would have asked more people to read aloud to me.  After chemo treatments I often couldn't watch tv or read a book but could listen.
     I would have written about more of the journey, or maybe asked others to write about their part of the journey.
These are all things that I, as the patient, could have asked for more of.  If you are a patient what would you ask for?  If you are a caregiver or family member or friend what would you offer?