When you are sorrowful look again in your heart,
and you shall see that in truth you are weeping for that which has been your delight.

~ Kahlil Gibran, from"The Prophet"

Thursday, April 28, 2011

What? Did someone say something?

Sorry! I must have nodded off again.
Was I drooling?
Oh my gosh, recovering from surgery is exhausting!
Erin used to make it look so easy.

Since returning home last Friday, my days have consisted of sleeping, showering,
napping, eating, napping again, watching TV which causes more napping
and walking outside a few times when it actually hasn't been RAINING!
I don't remember moving to Seattle.
Note - when I walk outside I stay within a two-three block radius of home.
If anyone sees me sprawled on the sidewalk somewhere,
please just drag me home and deposit me on the front steps!
I haven't been able to train Keenan to do so yet.
He'll appreciate your help.

Dave will find me when he gets home from work and put me back on the couch.
Other than the exhaustion, I'm fine.

More importantly, Jim is doing well.
He was released from the hospital on Monday and is very happy to be at home.
For now, his new normal involves blood draws 3+ times a week
to make sure his new plumbing is working properly.
The medical team is keeping a close watch on his creatinine level, fluid output, etc
and ongoing adjustments of the anti-rejection medications are made accordingly.

In effect, both of our systems are recalibrating ~
mine, to functioning on just my right kidney
and his, to running on my gently-used left one.
I still think the whole process is pretty darn miraculous.

PS ~ Thank you to all who have signed up for the Blood Drive so far. For planning purposes, please PLEASE make your appointment as soon as possible. (Click Here for Instructions.) We look forward to seeing you all there.
I'll try to stay awake the whole day!

Friday, April 22, 2011


In Praise of My Bed
At last I can be with you!
The grinding hours
since I left your side!
The labor of being fully human,
working my opposable thumb,
talking, and walking upright.
Now I have unclasped
unzipped, stepped out of.
Husked, soft, a be-er only,
I do nothing, but point
my bare feet into your
clean smoothness
feel your quiet strength
the whole length of my body.
I close my eyes, hear myself
moan, so grateful to be held this way.

© Meredith Holmes. All rights reserved.

I hope the Easter Bunny is generous to one and all.

Thursday, April 21, 2011

my kidney is just down the hall

such a strange concept!
jim and i are both fine
he spent the first night in icu as a precautionary measure
last night they moved him onto the transplant floor just down the hall from me
i walked with dave down the LONG hallway (it only seems long) last night to see him for the first time since surgery
we both looked awesome in our hospital gowns with our butts hanging out, white support stockings, dragging IV poles and with serious cases of bed hair - stunning

it was quite the reunion - big hugs!
it's so strange to know my kidney is inside him - i have one and he has three
whoa - crazy and miraculous!
mine is humming away in him
all is well

thank you for all the prayers and good wishes
hang with us and keep praying

Monday, April 18, 2011

It's Almost Time!

Erin's 20th Birthday Celebration
Second Annual Blood Drive

SUNDAY, MAY 15, 2011
8:00AM - 3:00PM

Click on the tab above
- "Blood Drive Sign-up Instructions" -
and you'll find a direct link to the LifeSource website
and step-by-step directions.
Phone a friend and plan to come together.
Chat with people from the community.
Meet other generous folks.

♪ Listen to some tunes
while you have a slice of cake with us. ♪
Celebrate Erin's birthday
while sharing your gift of good health
with someone who is less fortunate.
It'll make you feel GREAT!

Please sign up as soon as possible
so LifeSource can adjust staff and stations
based upon the number of committed donors.
We hope to rock the Barn like we did last year!

Help us light the way for those in need.
Again, imagine how many will benefit from our united effort!

Forward this post and spread the news!

Dear Friends,

We had a wonderful family BBQ yesterday, and today we awoke to snow!
So, instead of looking out the window, I stayed on task here.
I’ve been drinking clear liquids all day like a good girl.
My bags are packed. My playlist is set with a little JT, VM, JB and NJ.

crafted by Karen L R
I have my pillow and my rain machine
and a funky little charm from a far away friend,
(check out her kidney! she rocks!)
and a very soft teddy bear
that a special little girl gave me to sleep with
because we couldn’t figure out
how to sneak Keenan into the hospital. xo Morgan
It just doesn't get any better.

From way down deep in my heart
for all the phone calls, cards, emails
and blog comments (I don’t even know some of you!).
Jim and I are so blessed to be wrapped in this big, giant, compassionate,
generous hug that spans across the country
and all the way down to Colombia!

I know that all of you would do the same thing I’m doing
if someone you loved needed you.
We’re ready.
All will be well.

I'll see many of you at the blood drive.

Monday, April 11, 2011

Some VERY Exciting News!

We did some serious celebrating yesterday up in Wisconsin.
My brother's birthday was last week on April 3rd, and mine was yesterday.
After all these years, it's pretty tough to come up with a truly unique gift idea,

but I think you'll agree, this one is pretty good.

On Tuesday, April 19th
Jim will officially become the new owner 
of my "gently used" left kidney!
How exciting is that?!

My big brother is an incredibly brave man who has weathered major health issues and faced into some pretty challenging experiences during the course of his life. Most recently, the long term use of one particular drug prescribed to treat an ongoing health situation caused his kidneys to fail, and he was forced to begin dialysis last fall. Dialysis has profoundly affected Jim's quality of life:  He's on a very restricted diet.  He's tethered to that machine for several hours three mornings a week and is absolutely exhausted for the remainder of each treatment day. His adverse reactions to this regimen limit not only his life, but its ripple effects reach the lives of his fabulous wife and two daughters as well.

My niece, Colleen, was kind enough to share this beautiful photo with me.

It was taken last week on Jim's birthday.
And this photo of Erin Elizabeth and my niece, Erin Kathleen,

was taken in August of 2006 at Erin's wedding.

Often one's current health concerns must be aggressively treated with toxic drugs whose long-term side effects could potentially damage the body's other systems, but the need for the immediate relief of symptoms or the potential cure of a disease overshadows what could eventually happen in the future. One is forced to take the risk at that time, and then deal with "what if" when/if it becomes an actuality. Such was the case for Jim; and had Erin survived Ewing's sarcoma there was a strong possibility that her future health could have been compromised in a similar manner due to the nephrotoxic and cardiotoxic side-effects of some of her chemotherapy drugs. She'd already developed some peripheral neuropathy and had most likely lost the ability to ever conceive a child by the end of her first protocol. Other long-term effects were likely.

Erin's (and therefore my) personal experience of this rock vs hard place drug dilemma, coupled with an empathetic understanding of a lifestyle limited by the ball and chain hold imposed by ongoing chemotherapy/dialysis treatments, were factors that led to the decision to undergo testing to determine my eligibility as a living donor, and I began the first series of medical examinations in early February. If only it was as quick and easy as is appears to be on Desperate Housewives. Really??
I've been throwing things at the TV during recent episodes!
First and foremost, the donor and recipient must have compatible blood types. We're both O+, so score one there!  Blood is drawn for tissue typing, crossmatching, antibody screening and to make sure the donor is free of any transmissible diseases (HIV, hepatitis, etc).  A closer "match" means fewer anti-rejection drugs for the recipient. (Because we're siblings, we're close. He's looking a little standoffish in this pic - too cool for the younger sister!)

Tests are performed to ensure the donor is cancer-free (Forced me to get up to date on things and to also have that over-50 test many of us avoid - piece of cake!) and that there is not a current medical condition that affects the kidneys such as high blood pressure or diabetes. Special tests determine current kidney function and cardiac wellness. Essentially, one's overall health must be excellent in order to be considered. (No chances are taken when it comes to the well-being of the donor.) The process also involves psycho/social evaluations, and meetings with a nurse practitioner, a dietician, a pharmacist, nephrologists... and requires the development of an ongoing and sometimes frustrating relationship with a donor advocate who works with a recipient advocate, each of whom has the job of protecting patient rights at their own ends of the spectrum, but must also work together using a communicative "team approach" method necessary to ensure the success of a complicated endeavor such as this. Tricky? That's putting it mildly!
SO... the weeks of poking, probing and scanning have proven that I am truly blessed to be the picture of health. Amen! After Selection Committee meetings, conversations with surgeons, some discouraging changes, the necessity of yet one more last minute test this past Wednesday and agonizing periods of waiting, we finally received the official news on Friday ~

IT'S A GO!  TUESDAY, APRIL 19th AT 1:00pm!


Am I afraid?  No. Not a bit.  I haven't had a second thought since I made the decision in January. I needed to survive the year of "firsts" without Erin to be certain I was strong enough, and then I was ready. I've carefully packed my bag with knowledge from life in the world of absolute neutrophil counts and have moved with confidence into the world of creatinine clearance levels.  My ability to do this is truly as much a gift to me from an emotional standpoint as it is to Jim to improve his physical well-being.  When Erin was sick I was helpless. I could hold her hand and stay at her side, and I take comfort in believing I did the best I could from that perspective, but so much was out of my control.

Thanks to advances in modern medicine I have the possibility of making Jim better.  Hopefully my little kidney will hum in pitch-perfect tune with his body and free him from the choke-hold dialysis has on his life.  I can do this without any adverse effects to my own body. Once I heal from surgery (it is a laparoscopic procedure) my lifestyle will not have to change in any way.  My life expectancy with one kidney will be just as long as it is now with two.
Honestly, it's a Win - Win situation for both of us.

I'm heading into surgery with a body that's healthy and strong, and I have the powerful spirit of one special angel who's been whispering in my ear since January ~
"Of course you should do this mom. Duh!"
Rest assured, I've chatted with her!
All your prayer energy needs to go to Jim because he's in a much more vulnerable state than I am.  I'll be fine.

Hey ~ did you know that when they give the kidney to the recipient they stick it in the front part of the abdomen and leave the other two in there? I didn't know that! So, Jim has assured me, "Mare, whenever I take a leak I'll pat your kidney and thank you... every time.  It's the gift that keeps on giving."
Spoken like a true, smart-ass brother!

Wow, that's even better than the Jelly-of-the-Month Club, Clark!
Thank goodness, because now I'll never have to give him another birthday present. Check that one off my future to-do list.
~ ~ ~

A few wrap-up nuts and bolts ~ Surgery will take place at Froedtert Hospital in Milwaukee, and I will return home to recuperate within just a few days. (Anyone willing to rub my feet during that time, please send a note.) Jim will be hospitalized a bit longer. We both want to be home in time for the Easter Bunny's arrival. I'll take a couple of weeks off from my new part-time job (which I love, by the way), I recently accepted the position of newsletter editor for my Chapter of The Compassionate Friends and this wonderful bunch of kindred spirits is transitioning me into the preparation of the May/June issue, and I have this VERY important blood drive coming up that I've been planning for with the LifeSource rep. (I'll be ready to post sign-up details next Monday before I head up to Milwaukee.) ... Sarah's birthday is tomorrow, the magic has continued for what will be 31 years on 4/26, then there's Tasha's shower in June, and that leads to a very exciting wedding in August... so many exciting things are happening, my head is spinning!
If I don't see you sometime before, I'll see you on May 15th.

I'll be in touch when I can.
Peace to all.

Tuesday, April 5, 2011

Quote of the Week

those awkward conversations after the death of one's child...

I do not mean to pry,
but you don't by any chance happen to have
six fingers on your right hand?

Inigo Montoya
Do you always begin conversations this way?

Man in Black
The Princess Bride is a movie one absolutely falls in love with or one that is just so misunderstood! (You can tell in which camp I reside.) It's a romantic love story filled with quirky characters who embark on perilous journeys - up the Cliffs of Insanity, through a Fire Swamp, down into an awful Pit of Despair where the Lifesucking Machine resides - but have no fear, for one is also reminded to believe in miracles thanks to a man named Max, and all adventures happen on the way to a delightful ending where love and goodness triumph over evil.  It's been one of our favorites for years, and quotes have been thrown about among family members under many circumstances because SO many lines fit snugly into such a wide variety of situations.
And now, I have to smile at the lines above that parody the awkward dance 
that accompanies some of my daily encounters. 

Within our surrounding community, the majority of people are aware of Erin's passing from cancer. This extended family of the faithful supported us throughout her illness, and has continued to stand by our side since her death with considerate gestures and dedicated participation in blood drives and fund-raisers.  Our survival of this tragedy would be so much more difficult without these individuals whose ongoing acts of kindness remind us we do not walk alone.

When conversations occur within the parameters of events such as those mentioned above, the express purpose of which is to do for others in memory of Erin, her name flows with ease and abundance from everyone's lips. After all, she's the reason we're gathering.

However, on a day-to-day basis there's a level of discomfort present during some chance meetings around town; in the aisle of the grocery store, at the post office...
There's Mary!  Do I ask how she is? How Dave is? What her plans are for (insert upcoming holiday - always a tricky topic)? Do I ask about her kids (even trickier)...   I mean the ones who are alive? Because she'll start with Chris, progress to Sarah, and then we'll begin the approach toward the abrupt drop-off because her account now has to end after Matt. Oh, but I can ask about Keenan. Do I tell her what my kids are doing, oh God, especially the one that was in school with Erin?

I usually throw the lifeline at this point with an inquiry about that person's family, because as much as I grieve Erin's absence, I do have a genuine interest in the lives of the living.  Yes, I admit it sometimes hurts to hear about all the exciting things I desperately want Erin to be doing, more so on some days than on others, but this is my life now and I dance to the beat of it as best I can.

The process is different when it involves people I know well. If I'm the one to bring Erin into the conversation and set the tone, most can follow along accordingly; some with an ease that warms my heart, while others do their best with varying degrees of comfort. It's the rare person who will initiate a conversation about her at this point, and that's difficult for me.  I suppose it's partially the hesitation to broach the subject for fear of making me sad (hint - It doesn't.  I'm comforted by the affirmation that she's not forgotten.) and it's also the not-so-subtle reminder that life does go on, and just because she's still front and center in my thoughts because I'm her mother doesn't mean she occupies that seat in the minds of others. Of course she doesn't. People move on.

When I meet someone for the first time the flow of conversation is in my hands because, through the course of the usual introductions and getting-to-know-you-a-bit pleasantries, the topic of family is often one of the initial items mentioned.
Oh, do you have kids?  Yes?  How wonderful!  What ages are they and what are they all up to?

Deep breath ~ Well, it's like this...  and the dance begins anew, usually with its steps dictated by what my future relationship with this person will be.  I always firmly state,  I have four children,  but from here the story can change when I account for their current whereabouts. The only reason I don't always say,  Our youngest daughter died from cancer,  is to rescue the listener from what I know will be feelings of embarrassment and discomfort. I have no trouble saying those words - I have come to terms with Erin's death (most of the time), I'm proud of the way she lived her life and thankful for each day she was on this earth (all of the time) - but the ensuing look of panic makes me feel so sorry for the inquirer, and the requisite steps I take to ease the awkwardness can be complicated, and sometimes it's just not necessary to go down that path... for either of us.

So yes, interaction can be so awkward.  I often feel like I have six fingers on my right hand.  The death of one's child is an incredibly complex topic, and no one can walk with confidence at all times in all situations. Everyone tiptoes about on occasion. A comfortable plan for one does not necessarily work for another, and even the best plans need adaptations based on the mood of the day.
I've decided to stay with the one-day-at-a-time attitude since there's really no hurry. After all, I have the rest of my life to work on my technique.

Friday, April 1, 2011

Maybe This Year

Wow, we say this every year!

Today is Opening Day for the Chicago Cubs.
Game Time - 1:20pm at Wrigley Field.
Ahhh, The Friendly Confines.
There's always hope at the beginning of a new season!

Holy Cow!
It could be!  It might be!  It is!  A home run!

~ Gotta love Harry Caray ~

Wait a minute.  
Is that Erin in a Cincinnati Reds hat?

Oh man!  Really?
I'm sure Matty and Puck (my dad) would have 
a great deal to say about this indiscretion!

Perhaps Puck is chatting with her about it now.
I like that thought...