Amazing Zippered Woman

My Main Squeeze and Our Issue

I just can’t let another day go by without discussing my more immediate family. This has been a group effort and they ran a tight ship and kept everyone on track.

I’ll begin with the Big Irishman. I originally married him because he made me feel tiny. We have had a great cruise through life - a few downs, but lots of ups. In the beginning he struggled a bit with what I defined as the basic premise of our marriage — SHANLEE IS ALWAYS RIGHT! He finally caught on or at least he fakes it. He is a wonderful man and Waterloo, Iowa (my parents especially) really celebrated when I finally snagged a man at age 28.  One night during this most recent medical extravaganza, Tom was washing my hair. I looked up into his eyes and what I saw was bottomless love and tenderness for me. As long as I can find that look in his eyes, I will be just fine.

Now about our issue… I love it that the legal profession has selected the term “issue” to refer to children. I don’t remember them being issued to me.  That connotes standing in a long line with a number, and when it’s you turn, you reach out and take the package being handed to you. I remember a fair amount of unpleasantness while I pushed that package the size of a Hummer out of my body using a series of pushes and displaying numerous moments of self pity and a real bad attitude.   Oh well  — it’s just semantics.

No children should have to do what mine have done during the last six years. They shouldn’t have needed to live their lives under a gray clould - wondering how long dear old Mom would be around to plan weddings, hug grandchildren and do all the things Moms are supposed to do. My kids have helped Tom keep this whole show together for many years. Kids I love you and thank you.  (These words just scratch the surface.)

Let’s talk specifics. When we got THEEEE CALLLLL, the kids kicked into overdrive and stepped into this drama with both feet. Patrick met us at University Medical Center. Meghann established and manned a communications base in Salt Lake City.  Did I mention that Katie was having her appendix out at the some time I was having my heart put in? Meghann was running two phones to keep every one included in what was happening. I must also talk about Henry and Scott. I refer to them as my re-issue. Scott stepped up as transportation director - securing tickets for every one, while Henry watched over his beloved Katie. Why do these boys want anything to do with this family? They should be running in the opposite direction. Thanks boys for hanging on.

My last memory as they wheeled me into surgery, was looking back at my handsome, strong son, my trophy husband, and my Donna.  In the days ahead, everyone assumed multiple roles. Meghann continued as communications liaison by blogging and manning phones while nurturing and caring for me and everyone else.

Katie became Katilla the Germ Hun and medical coordinator. On several occasions she demanded that nurses and doctors scrub before touching me. She frequently asked, “Are her labs back yet? How are her med levels?” She kept a constant eye on the clock, only to hit the call button if my pills were three minutes late. I think Katie means “caring for others” in Swahili.  Later in the week when the medical stuff was under control, Katie turned our
apartment into a real home — filled with decor and love.

And now Patrick….he has the really important job of running the Mesa house and caring for my dog children. He has also decided to learn to cook. MY new heart rests much easier knowing my four-legged children aren’t scared and alone. Tom has taught our son to be a wonderful, loving man.  (He has also blossomed into a real looker, as my mom used to say.)

Wouldn’t you agree that I am a very lucky woman?

It’s Good To Be Back!

She’s back… This is Shanlee, the AZW. I have many things to discuss in the
days and weeks to come, but for today I want to focus on just two ideas: 
How incredibly blessed I am and the way you all have made me feel loved,
nurtured and safe. This has been a very long journey and I know it isn’t
over. I feel that my family, my friends, my health care professionals, and
my God have cradled me and whispered words of love and hope in my ear. The
enormity of what has happened to me is still sneaking up on me during quiet
moments. Don’t be surprised if I suddenly leave a subject and insert a
thought that is totally unrelated.

Through the past several days I have never felt alone, but rather surrounded
by your love and support. During the occasional hurting procedure and even
in the middle of the night, I have never been alone and Tom has never been
alone. FOR THIS I THANK YOU! I’m blubbering again, so I’ll blogulate again
tomorrow.

Signing Off

Today’s post will be one of both excitement and hesitance for me, as I have, to report the very good news we have all waited for, but with it, will be handing this blog back over to its rightful owner.  My mom was released from the hospital yesterday afternoon, after a long, trying morning full of difficult and invasive tests, colonoscopy and echocardiogram among them.  While her tummy continues its committed protest of….something, the cardiac team following her met, voted and sent her along, feeling at this point that stress, exhaustion, and as of yet unrequited eagerness to get moving are as likely causes of the persistent troubles as any medical reaction or bug they can combat better in the hospital.  And, I am assured, she will not be far from their attentive eye, with daily doctors visits and thorough review of blood and biopsy samples, any further troubles will be swiftly identified and dealt with.   The rejection itself is ongoing, but apparently under control, as her medicine loads are back to a level she can manage herself, at home.  I have not yet gotten to see her, but we have spoken several times, and I can hear very clearly her tremendous relief at being allowed to head home, and onto phase two.  I can only imagine how great a shower and shave felt, and I am told she curled her hair, plucked her brows, put on real clothes, and looked amazing.  Its only fair that the very miraculous and vital little organ that recently took up residence in our family be packaged in so bright and beautiful a parcel as my mom. 

So.   Let me just say a few things in departure, as I step down from my post as temporary author of this site.  I could not, when I created it, have imagined the vehicle it was to become for expressions of love and support so intense as it carried.  It was, as you saw in the couple of posts she completed pre-transplant, to be a window into my mom’s amazing world; maybe a therapy of sorts for her, but through which she gave us all a look at life from her vantage point, one that is as truly unique and inspiring as they come.  It will be that still, but I will admit openly that I am delighted for the quick and unexpected turn it took down a different avenue…one where I was given the chance to dissect and share the most amazing experience of my life.  For me, it was life and spirit saving, a way to force clarity and calmness during days that could have wrecked havoc on my typically anxious and over-reactionary personality.  If not for the blank pages I confronted almost every day or night, I may not ever have made sense of the things I needed to say and feel about all of this…thank you all for wading through my words with me.  Thank you as well to those that commented, on the pages here, or in e-mails or calls or prayers or thoughts…we got them all.  There is no testimony greater, to the blessed and beautiful waves the AZW has made in our lives, than the devoted and sincere offerings of encouragement and love contained, on and off these pages, in the last 13 days. 

With this, I give you back your AZW.  Perhaps from time to time she will allow my intrusion again, but until then, I excitedly become once more her most loyal fan and reader…she is after all, my very best friend. 

It’s A Good Thing

Written in delicate cursive on the inside of my parents’ matching, thick, gold wedding bands are these simple words: “It’s a good thing.”  Katie and I have probably asked them 1,000 times what they mean, and even tried to trick them into accidentally letting something slip…but it has never worked.  I don’t think we will ever be privy to the significance behind this special phrase; I am not sure we will ever decipher what, beside the obvious, was so “good” about their union years ago.  This December they will have been married for 29 years.  I only caught the last 25 of them, Katie a few less, and while that has proved insufficient to decode the mysterious message, the last few weeks have demonstrated, like never before, just how good a thing it is. 

My dad has had a rough couple of weeks.  This is both the understatement of the century, and a gross exaggeration….surely they have also been among the best he will put to memory.  I spoke to him moments after they received the call May 10^th, and have already described the electricity I heard in his voice.  I can only imagine a similar excitement when he phoned his folks three decades ago to report that she had, against all odds, said “Yes!”  He did not leave the cardiac wing of the hospital once for the first 39 hours.  Not once.  He paced some, and wandered as far as the windows near the elevators, but did not move more than 20 feet from where word of his Shanlee, his spirit, would arrive.  After we learned of the initial success of the surgery, he waited still, for 3 or 4 hours at a time, just to have 10 minutes to stand silently at a distance, unable initially to even hold her hand.  He would scrub and scour his arms and hands for more seconds then she would be awake once he entered her room.  Once he started going home to the apartment to sleep, he would leave late, and get up early to return.  He even made the coffee at night so that he would not be delayed even a few extra minutes, when sunrise brought a new day to spend with my mom and her new heart.  Understanding how easily she could be taxed in the first days, he would sometimes sacrifice his own bed-side moments so that a friend or other relative to go see her, but it easy to see how the separation made him ache.  Around her, he was not sad though, and rather than crumbling under the weight of this trying experience and emotional environment, he was joyous.  He always smiled, in her room, in the ICU, in the hallways of the hospital, all of the way out to the van in the parking garage below.  Any signs of the toll this might take were totally invisible, except maybe on the drive to or from the hospital.  Even then he talked a lot about the miracle this was, and the plans he was already making for their new life.  I doubt I will ever see a more shining and simple example of courage, faith, love, and unwavering strength in my life.  If I do, it will be from the lady he adores, impossibly much, as she fights, in waking and sleeping, for a life he cannot imagine going without.

Of course, this would not be real if he had not suffered at least a few little setbacks.  I will mention them only briefly, as the great love story of the AZW and the man she loves, with both of her hearts, is much better told in happy tales. 

First, he has a serious case of “waiting-room elbow.”  A picture would do this much better justice than my description will, but he has resisted all attempts to digitally document this bizarre medical phenomenon.  Imagine if you will a squishy bubble, about the size a lime, filled with some liquidy substance, that has taken up residence in the extra skin at the joint in his left arm.  When his elbow is bent, it hangs down a little, and shakes when he walks, or gestures as he talks.  When his arm is straight, it looks as though 44 oz. of Gatorade could be contained within it.  Very odd.  But, apparently benign, as several of the nurses he hangs out with all day have looked at it, and while slightly grossed out, are otherwise unconcerned. 

Second, he has, I assume as a result of sleep and sun deprivation, developed a very abnormal obsession with the telephony solutions available to him, at any given moment of the day or night.  Here is an example.  He became concerned on surgery day about going over his cell minutes, and starting calling Sprint about every hour to check his plan balance.  Once he remembered that he had my mom’s cell phone also at his disposal, he started using it, but only to check the minutes left on either phone.  I think he used more minutes checking his minutes than he did talking to people.  I kid you not, I saw him on both phones AT THE SAME TIME more than once, as though checking on his minutes on one phone, while using the other line to offer an update to a loving supporter, was some secret trick that afforded him the chance to know his minute situation in real-time.  As it became clear he was going to lose the cell phone game, he moved on to a new level of fixation, taking up a passionate affair with phone cards.  Inside of two days, he knew which shady gas stations sold the most minutes for the least dough, and their advantages over the Costco variety monster card.  He can now recite from memory, at the start of any phone call, the exact number of minutes left on his flat, plastic, piece of heaven.  I get calls like this: “Meg, it’s Dad.  Mom’s good.  You have 14 minutes to talk to her.  Love you.  13 and a half minutes.”  Also, he has in the last week established not one, but two, land lines in the apartment.  One is only for inbound calls, the other is voice over IP through his web connection, and he can call out ALL HE WANTS TO from that one.  ANYWHERE.  Unlimited minutes.  It’s amazing Dad.  

Okay.  Enough making fun.  He may read this, and if he doesn’t, I know he has a few fans checking it out.  Basically, please know that I am more proud and delighted than ever to have such an amazing man as my hero and personal example of all the right ways to do things, even if he occasionally retains weird puss and goes wide-eyed minute-crazy.

In conclusion, I think it’s a good thing that my blissfully married parents taught me the importance of family, for surely each of us would crumble if not for our lovely huddling close together to get through this.  I think it’s a good thing that humor has been among the brightest lights in their glowing marriage, as this blog would be painfully dull were it merely a regurgitation of facts.  I think it’s a good thing that the AZW rests comfortably and confidently enough in my father’s love that she can find peace in his eyes and smile when scary words are thrown at her…words like donor, and rejection, and pain.  Mostly, I think it’s the best thing in the world that while they have long kept their magic password an intimate secret, they have left Katie, Patrick and I no doubt that a life spent loving wholey and completely and unabashedly is the only way to make a good thing. 

Under Siege

I have today, much to my dismay and frustration, the unfortunate job of being the bearer of bad news.  I think this is made even more difficult by the fact that so far, I have had mostly only very blessed and positive updates to provide. 

The results of the biopsy came back, and there appears to be a problem.  It turns out that her body is not the welcoming host we thought it was, and it is waging quite a little war against its newest component.  She is in level 4A rejection.  The biopsy shows a white blood cell count in her heart tissue that is elevated enough to raise alarms…her body is attacking her heart as though it was a foreign object.  Biologically, that is exactly what it is, but we had sure hoped the crazy drug regimen she has been on since the surgery would convince her body otherwise.   Her transplant coordinator assures us that this is definitely a speed bump on her road to recovery, but not an insurmountable one.

Please nobody panic…there are several things yet to be done to turn things around, and even some plus sides to consider.  She will remain in the hospital for at least another several days, and has already begun a pretty massive course of IV anti-rejection meds, namely a huge bout  of Prednisone.   The theory is that the tummy problems of the last week have limited her absorbance of her regular medications, and so many of those will be administered by IV as well.  And, they are going to have to find a way curb the tummy trouble… IV’s are not a solution long term.  If subsequent biopsies show that the advance of her immuno-army was halted, we are back where we were supposed to be today…she can go home and get started getting used to real life again.  If not, more treatment will follow and this will just be uglier than we wanted.  We will cross that bridge if we come to it. 

I will share too the chunks of this bummer that her doctor’s insist are actually benefits.   First, we know now what her rejection symptoms look like…her feet swell up and she doesn’t feel good.  These are clear signs she can look for in the future, for an early alert, should she reject again.  Second, this happened early, while she is still in the hospital, under her incredible nursing team’s watchful care, which can only mean no stoned will be left unturned in the search for quick resolution. 

These little sparkles in an otherwise gray sky do not cheer her really at all, and when I talked to her she was very sad and disheartened, feeling she has to relinquish her Super Star Transplantee title.  I assured her that she is more a super star than ever, as even in her worst trials she manages to inspire and encourage so many, but today at least, she is unconvinced.  I know she won’t give up though.  After some tears and some angry words this afternoon, she calmed down and said simply, “I am going to have to have a talk with my new partner, this is a battle it takes two to win.” 

Mom, this is a battle you have hundreds of us standing beside you, ready to fight. 

Donate Life

Six months ago Scott and I got it in our heads to clean out our storage unit.  This was probably a good decision since its contents had begun multiplying and growing out of control.  He mostly headed up this effort, because he is much more militant about getting rid of stuff than I am, and because Kristi called with hot gossip shortly after we got started and distracted me.  When we were done, we had quite a little pile to unload, and some of it pretty nice stuff.  We got rid of a futon mattress and frame, some “artwork”, a ton of clothes, a space heater, and my trusty old bike, to name a few of the valuables he decided I could live without.  I have to say, I felt pretty good about dropping all of that stuff off at the DI, except for the bike, which Katie got her hands on first. 

There is a point to this.  Imagine how it would feel to donate more than storage junk you have not used in the three years since you unloaded it from the purple cavalier you moved to Utah in.  There was a Red Cross blood drive at my work today.  The timing struck me as more than coincidental, and I found I was eager, almost desperate, to give back a tiny portion of the biological second chance my mom just received.  In the end, I could not donate, because of the antibiotics I have been on recently, but you can bet I will not miss the 8-week mark when my number comes up again.  My dad has scarcely missed a donation in ten years…my sister and I have always called the Red Cross “The Vampires” because they call him every 8 weeks to the day to remind him what he can do for an anonymous stranger he will never know.

Let me wrap up.  Many of you have sought an address to send well-wishes to the AZW, and she would love any tidings her fans want to pass along.  I won’t post it online, for fear of a pilgrimage to her door by the thousands of adorers I am sure will read this in time, but you can call for it if you would like.  She definitely deserves a present or two, she has been a very brave girl. 

There is something else she would like though, from anyone who is willing to give it.  I have worked for days to find words brave enough to convey the importance of what she asks for.  There is a link below to the Donate Life - Coalition on Donation^© website.  Donate Life is a national organization dedicated to increasing organ and tissue donation rates through education, support activities, and donor drives.  My family became involved with them when Mom was added to the list, and they have been a wonderful source of information and encouragement.  In tribute to the Amazing Zippered Woman, join the cause that she has taken as her own, and help us increase awareness about organ donation.  Visit the site, peruse it for ways to help, wherever you live.  Consider investing the time or money you would offer my mom in gestures of friendship or love, instead in an organization that is fighting for families like ours all over the country.  Most importantly, become donors yourselves, and think of the gift you would be giving. 

http://www.donatelife.net/

Take another little piece of my heart now, baby!

First, I solemnly swear that if I ever go three days again without posting, I will officially resign as a blogger.  Maybe.  If you are interested in excuses, the past few days were to be my last in Tucson for a while, and I sorta felt my mom deserved my undivided attention.  Okay, maybe it had more to do with my complete inability to imagine having to part from her so soon, and feeling starved and shaky when not by her side.  That, and I was discovered on the wi-fi network I was high-jacking, and Saturday morning it suddenly started requiring a password.  Excuses aside, I can only imagine how it must have been, checking in vain for news of the Amazing Zippered Woman, and if you are not someone who just called me in search of an update, and to offer a quick reprimand, I am truly sorry for my silence.

Now, the good news is that she continued her record-breaking recovery over the weekend, and has now been officially pronounced the best cardiac transplant patient ever.  In fact, she has been asked to consider being a mentor to past and future transplantees that struggle more than she has with the tremendous physical and emotional aftermath of this procedure, and the illness that usually precedes it. 

On Saturday, she walked over a quarter of a mile.  Twice during the day she did 3 laps without stopping…her personal record, and very impressive considering she still is not holding on to much sustenance.  Alas, her tummy still isn’t cooperating very well, but her doctors are still not saying it is a problem.  All of the test results and cultures have turned up negative for any pesky germs or bugs, so once they get her medicine all straight and settled, she should do better.  Personally, I think once she can get out of the hospital, eat when/what she wants, in the comfort of her fabo new apartment, in the company of her friends and family, she will do better.  She is pretty bound and determined to have this run smoothly, and have we ever seen her come up short once she sets her mind to something?

Today was another great day.  Sadly, I could not be there with her, as I have returned home, to Scott and to work, but from what Katie and my dad say, she had a better day than I did.  Biopsy # 1 took place this morning, and she had been pretty nervous about it.  I can’t understand why, its just a giant needle inserted in the side of her neck and pushed through her chest cavity into her new heart, where a tiny piece is ripped off!  I nearly pass out just thinking about it!  And yet I don’t even think it was the likely agony that upset her, but the thought of giving up even a microscopic piece of her life-saver…she has already gotten very used to having all of it to relish and rely on.  I am however, happy to report that it went very well!  The AZW called me herself, after Clorox-wiping the phone of course, to report that it was a piece of cake, and that she barely misses the tiny spec that has been sent off for tests.  We will learn the results tomorrow, and I will not delay in my report of them once I hear.  If we get the good news we are counting on, she will be released tomorrow.  Then begins Phase II – Rehab! 

Kiss and Tell

Well, yesterday was a big day.  With bacteria a constant threat, you can imagine that touching is strictly off limits so far for the AZW.  Of course the Brennan’s have never been a bunch for following all the rules, but these rules seem important, so besides sneaking the occasional toe squeeze or knee pat, we have mostly stayed away from her.  Yesterday though, her transplant coordinator, Nancy, said she could probably afford one little kiss.  Not a handshake or a back rub, but a KISS!  Katie and I were seething with jealousy when she picked my dad for the big moment, and he was giddy as a schoolboy when he bent over to bestow the sweetest little angel kiss on her waiting lips.  Perhaps in a few months they can move onto real smooches, and from there, who knows.  Before this gets too graphic I will move on, closing up with the thought that I wish a kiss signaled the coming end to more of live’s trials. 

Today, the touching continued, and this time it was my turn.  My mom decided it was about time for a hair wash, and rather than bug a nurse, she asked me to help.  We set a chair in front of her sink and covered up all of her electrodes and then went to town.  I have never washed hair so carefully in my life, and I think as long as I live the smell of Johnson’s & Johnson’s No More Tears shampoo will make me think of how impossibly much I love my mom.  She is doing so well.  She is still battling a sick tummy, but has decided all the weight she is losing this way is an added bonus (her nurse is discouraging this thought process.)  This morning they heard a bothersome catch in her breathing, and have declared it a pericardial rub, a painful irritation in the lining of her heart, but not a tremendous concern recovery-wise.  We are cutting back her lap walking for now, largely against her will, because until she is holding on to more of her yummy hospital food, she should take it easy.  She was the best walker around, a position I am sure she will reclaim shortly. 

We are hoping for a release early next week, the only hold-up being this tummy thing.  She has her first biopsy on Monday, and we can’t wait to see how well her brand new heart is fitting in with the rest of her parts.  Keep your fingers crossed and your prayers coming.  

Lassoed No Longer

It seems each time we pass a significant milestone I hold my breath, unsure when the next round of joyous congratulations will start.  And each time I am amazed at how soon it does.  I cannot even blog fast enough to keep up with it all.  Since I last posted, she has been freed of all her tethers.  We arrived this morning to find her chest tubes removed, leaving only her central line in place.  Then while we were gone on some errands in the afternoon they removed that too!  This is phenomenal, considering she is only a week old today.  So soon, she is totally free to move about on her own, and in her fancy new recovery room.  Yes, she has also graduated out of the ICU.  They still keep a very close eye on her, and while she is definitely picking up speed on her walks, they will likely discourage marathons for a while.  But it is progress.  Big progress.

In the spirit of realism, I will add a few of the road bumps we came up against today.  There seems to be a slight infection in her mouth, which while scary enough to draw considerable attention from her doctors, no one is calling a huge mess.  Up go the antibiotics and gone goes the food freedom.  She also had to have an IV port put into her arm to replace the central line, and this took 3 hours, four nurses, and about 100 pokes to accomplish.  She was pretty frustrated, and very bruised at the end of that episode.  And her tummy has started grumbling quite a bit about the meds…a phase we hope passes once she is eating and drinking and sleeping a bit more regularly.  Really, I mention these things only to show what an amazingly strong woman she is.  Through all this today, she has insisted on slowing down considerably on the pain meds.  It is probably too soon for this, it sure would be for me, but I think she is so in love with feeling things again, she takes the good with the bad, and a keeps a smile on her face. 

Thanks to Donna and Sharon for their visit today, and for all the delicious food.  Thanks also to each of you sending prayers and praise, your encouragement makes her stronger with every word I read.  She shared with me today that she has not felt alone one moment since her new heart arrived.  I offer that that comes from the tremendous gift she received from an anonymous angel, but that she feels too the constant flow of love and support from each of you, all around the world, that cares so much for our Amazing Zippered Woman.

The Nerve!

Upon posting my last entry, I thought better of leaving all of the wonderful friends and supporters that read this, deprived of any news regarding our star.  Here is a wrap up of the last couple of days.  I could not post again as promised late yesterday, because the raspy, irritated throat that has plagued me since my return to the dry desert inspired a cough insistent enough that my mom’s nurses, and my dad, threw me out of her room.  I will concede that it seems a bad idea to risk infecting her with a bug, just as she reaches the final lap of what has been a long damn race.  So I obliged, vowing that a bottle of NyQuil would cure my cough over night, and headed for the library.  Unfortunately, blogging was to be denied, as it seems I have been discovered.  Can you believe they can tell by looking at me that I don’t pass as a medical student? And without my pal Rosalee’s password to prove my worthiness-by-association, I was stuck.  So I did what was probably best, sat for a couple hours reading and resting, went to dinner with a good friend, and retired early, yes downing about a bottle of cough syrup.

Here I go, rattling on about non-Shanlee topics.  While I was in exile yesterday some important stuff went down.  My mom’s doctor came by and decided she is still draining too much fluid out of her chest cavity to remove the tubes.  Bummer.  This meant too another day in the ICU, made more tolerable by the company of all her “new best friends,” the nurses that have cared for her so incredibly well.  She walked again, this time with no racing heart or blackouts, and her catheter was removed.   Progress for sure, even if not at the land speed record pace she had set her sights on. 

Today was a good day.  No considerable change on the medical front; she still has her chest tubes and her central line.  She is still on most of the anti-rejection drugs, pain killers, and other system handlers that she has been on, although she is tapering them down.  She is mostly in a good mood, only periodically hitting snags when something shocking hits her, like Kirstie Alley appearing on Oprah to insist that she only had 70 lbs. to lose at her worst.  The nerve!  My mom spent most of the evening informing anyone that would listen that she wants hold of the scale Kirstie uses. 

She certainly seems to be on the right track, as her nurses and doctors assure us her progress is astonishing, and her downturns to be expected.  She still struggles, because hurting is not fun, and something so huge has happened to her that she still has not taken it all in.  She continues to rest in reverence and wonder at her tremendous good fortune and all the work she has to do to make it all worth it.