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?

Hope is another word for love

Hi all,

I must begin this post by saying, my valentine's flowers were beautiful!!  As were the flowers that my husband bought our 4 year old.  Very sweet.

This weekend I had the great pleasure of speaking at a Leukemia and Lymphoma fundraising event in Boston.  The Gala for a Cure was held on Saturday night and I think I was told that there were about 400 people there.  I was asked to come and share my cancer story with the crowd.  It was amazing!  I have told my story countless times at this point but never to this many people at once and I don't think I've ever heard the room so silent as I spoke.  It means such a great deal to me to be able to give back in this way.  I hope I am providing support for families and patients as well as reminding others why the cause of ending cancer is such an important one to support.  I hope I am giving hope.

This morning my 4 year old finished her breakfast and told me, "Madeline hurt my feelings mommy".  For those of you who remember having imaginary friends and for those who don't Madeline entered our family when G was about 2 and half.  She is the same Madeline as the one in the wonderful children's books written by Ludwig Bemelmans (http://www.madeline.com/).  Madeline is one of 12 young girls living at a boarding school in Paris and we often hear about Madeline and the girls in our house!  Anyway, this morning I found my self asking what Madeline had done to hurt G's feelings.  "She's not giving me any hope" she told me.  "Mommy, hope is another word for love".  At first glance this sentence might not make much sense but when you really think about it, it makes perfect sense and sums up a feeling that I've not ever been able to articulate.  So the next time you are thinking about hope and/or love please remember that hope is just another word for love.

With love,
Elizabeth

Valentine's Day

Hi Friends,

Its been a while since I last wrote here but not for lack of trying.  I sit down regularly with my computer sure that this is the time I'll know just what to put on my blog and then.....nothing. Nothing sounds right, nothing looks right, nothing makes sense, and nothing makes it past my immediate veto.  Why is that? 

I finally took the time to read through some old posts and read through the posts from our caring bridge site and something struck me: those posts (for the most part) were just me talking, sharing my day, my ups and downs, my life moment to moment.  Since then I seem to have fallen into the trap of trying to write the perfect post and when I don't think its working I just stop.  I've finally remembered that you are not reading this to correct my incorrect grammer or to question my use of foreshadowing.  You are here because you want to read what I have to say.  Thank you for that.  Hopefully, I won't forget it again and this blog can once again become my voice.

So, on that note, its Valentine's day and I did something that I think the magazines say is a no-no.  I asked for flowers.  I wasn't vague, I wasn't passive, I simply said "Honey, I'd like you to bring me flowers on Valentines day."  I may also have added in a quick something like "or I'll cry!" but we can forget about that little slip up.  It's not that I don't trust the love of my life to get me flowers its only that I wanted to be sure to express myself.  He knows I don't need roses and he knows that while chocolate is great I'd really prefer to wait for cases and cases of Cadbury Cream eggs at Easter time.  He also knows that I love flowers.  Pretty much all flowers.  Now, for those of you who are reading this and thinking its written so that a certain hubby won't forget - Stop being so cynical!  He already knows how I feel and if you've met him for even a moment or two you know that he wouldn't give me flowers because I shamelessly begged for them online.

That's my day.  Happy Valentines Day to one and all.  Give in to the commercialism and buy someone (even yourself) a card and some flowers.  Isn't it nice to make someone smile.....

Elizabeth

Happy New Year!

Happy New Year friends! 

How many of you took the time yesterday to write down a new year's resolution?  How many of you shared your resolution out loud with someone who might just hold you accountable?  How many of you think the whole thing is ridiculous but got a new gym membership anyway? 

I, spent the last 2 weeks or so, trying to formalize my resolution for 2012.  Not so easy to do....I had assumed that I could start with a few ideas and pull them together into one cohesive idea.  I started with some variation of the following list:
Eat better
Drink more tea, less starbucks (even if it is decaf)
Do yoga more regularly
Be organized at night for the following day
Change the sheets before they need it
Exercise regularly
Dust regulary
Stay healthy

The list goes on and on.  Many of the things I first came up with were, in fact, things that I can not control nor change.  Those didn't make past week 1, no need to resolve to do something that I have no chance of doing.  I'd much rather stick with realistic goals. 

On New Year's Eve my dear hubby asked me about my resolution...I quickly said "organization" but within an hour or two had changed that to "routine".  I don't know about you but routine works for me.  It gives me comfort and reduced anxiety.  It gives me control in a world, that is often uncontrollable.  So, for 2012, I resolve to give more routine to my life.  I suppose this means I should give the house a dust tomorrow!

Happy New Years!