Carrie Continues to Shine

[Shannon here again]  Carrie is doing great!!!  This is just day two, and she’s sitting up, cracking a joke or two, thanking her nurses and friends, and asking for what she needs. Oh, and drinking cool clear liquids through a straw.

There is a vast improvement from one day to the next.  The naso-gastric tube was removed this morning (the tube was left there after surgery to drain blood from the stomach – blood that inevitably gets to the stomach when the mouth is worked on surgically).

The obturator, inserted during the surgery, is in place.  Carrie has teeth where there aren’t any.  If you didn’t know any better and met Carrie in the street, you’d wonder what the fuss was about.

But to graphically depict what the obturator is doing, here is a photo of it.  As you can see, it replaces the teeth removed yesterday, as well as provides a cover to the part of her palate that was removed.

Obturator

Carrie is in a lot of pain, managed by medication; she’s swollen in her mouth and cheek area on the left side; and the logistics of easing pain, expelling mucous, and relearning how to eat can prove to be tiring and humorous challenges. Oh, and she’s still battling hot flashes (drat!  She was hoping for a reprieve…)  But she is doing great.  We friends and family see improvements by the hour.

She is graduating from a clear liquid diet to a “broken jaw diet” – which is blended food.

Carrie will be transferred to a regular hospital room tonight (she has been in a “step-down” unit so far), and the plan is getting her out of bed and walking without all the hindrances of being attached to about a dozen tubes and wires.  Once she accomplishes this feat and proves she can eat her blended diet, she can come home.  Estimated date for homecoming:  Tomorrow evening, likely.

She Did It!

Carrie with model of her upper teeth

This is Shannon, Carrie’s sister, subbing for Carrie who is otherwise engaged in a much-needed communion with her hospital bed.

After so many months of waiting, the surgery – technically, a left anterior partial maxillectomy for tumor resection –  took place early this morning.

Yesterday, when our mother and I went with Carrie to see her surgeon, we were very happy to find out that the area to be removed from Carrie’s jaw was a bit smaller than we were led to understand previously.  We were under the impression that most of Carrie’s palate would have to be removed. Instead, a much smaller section was removed.   We were greatly relieved and happy about this – “happy” that it wasn’t as invasive as we thought it would be.

In the photo above, Carrie is holding up a model made from her own teeth.  If you look closely, you may see some black dotted lines on the right that indicate where the teeth and bone were to be removed

Here is another view of the model showing the palate – again, the dotted lines showing the area to be removed.

In the end, one back molar was left on the left upper jaw, and both front teeth were also removed, along with the block of bone containing the offending desmoplastic ameloblastoma.

The surgeon was very pleased with the results, and after packing the wound, he inserted an obturator – a prosthetic palate with teeth modeled on her own teeth, so that she would not have a caved-in look.  Except for some swelling, she looks normal.

About what about getting all that tumor out?  The doctor said that the frozen margin samples sent to the lab immediately following the surgery showed no residual tumor cells.  A full lab report is due in a day or so, but he was confident there would be no surprises.

Carrie has at least 2 or 3 days in the hospital before she returns home to make a longer recovery, but she did it!  She was completely ready and went into the surgery very calmly, buoyed by everyone’s amazing support, prayers, positive thoughts, and love.  Thank you, everyone!

We will continue to keep you posted.

August

Rose of Sharon

Well, August 1st came and went without celebration.  It marked the end of a 6 month wait for some sort of insurance to kick in.  Even so, I had to pay out $9000.00, plus another $3000.00 to come, for what insurance may or may not cover.  And I have YOU to thank for having that money to hand over!  I am so grateful not to have that heavy burden on my shoulders right now, heading into the surgery………  Thank you, Thank you.

And so time is marching on and as each day is another day closer to surgery I do what I can to prepare for the changes it brings, to the best of my ability, of course….  Because, how does one prepare for this complete uncertainty?

For weeks I have been grieving, feeling vulnerable, weepy and sensitive, carrying the weight of this unknown upon my shoulders, trying to relate to the world around me that goes on as usual, with no regard for what might slow it down with fear, heartache and sorrow.

There are painful reminders of how everyones lives keep going along as usual and I am no longer riding that particular train.  Mostly, I can’t commit to anything and want to stay home, where I feel safe and don’t have to make excuses for all of the chaos that is going on inside of me.

So I find myself retreating a little more each day, to both protect myself and prepare for what lies ahead.  I am already not the same person I once was just not too long ago.  Only a few things can take me out of this funk and they have to do with music and food, playing music with others, listening to it being performed, preparing food for others etc…  These come as nice reprieves and bring me pockets of joy sandwiched between the rest.

I met with my doctor a few days ago and walked away from that appointment with mixed feelings.  I get confused, sometimes he can really freak me out and I have often left there crying and very unsettled.  This time he was so nonchalant and casual about it all that he had me convinced that it was no big deal but as my friend Patti said, who came along with us, “you want it to be no big deal, TO HIM, because it means he has done this kind of thing and is comfortable with it, of course it IS still a big deal to you…”  I agree.  I walked away that day feeling more solid and better about the whole procedure, even though he gave me some details that were disgusting, like, there will be a packing up above where my palate would be and will have to be there for 10 days.  Unfortunately, there will be a very foul odor coming from it.  My reaction was okay, my friends will have to be okay with that….

It appears that I am surrendering to the whole thing .

So now the push is to get a bunch of tests done and in a certain timing so that all things line up for surgery, the morning of August 18.  THIS is the ride I am on and though they say it is the journey that is most significant, I have to admit that getting to the destination sure sounds appealing right now.

Carrie~Querque

 

  

Me and Kate Brown

Carrie~Querque

5/30/09

Written after a full, exhilarating day shared with the love of friends and family.  The day was truly healing for everyone…..

Love is in every breath we take, in each beat of every heart against every chest that I have held close to me today.  We are each a blessing, a twinkle in the eye of Spirit, and all that we have shared on this special day is divinely inspired.  We all have felt the love, we know the love, we are the love and with wonder we continue to step forward and inspire each other…..

 

I am so grateful to everyone for the delight and pure joy we all shared at the Carrie~Querque gathering.  All day I was reminded of the many chapters in my life and the sweet, everlasting friendships that have sustained me and helped me become who I am today.  I can see my life as a book with many chapters written already, countless more to be recorded… 

The thing about closing a chapter in your life is that you can open the book once in awhile, to remind you of where you once were.    

The thing about starting a new chapter of your life is that the book is open and you can choose to either climb hand over hand in the dark to get in or gently lay your heart across the page and watch your dream rise up and write itself.

The pages don’t care how you approach them.  It is the job of the page to simply be open and receptive to the words offered to it…  

 

Thank you for your love and support.  You truly inspire me everyday.  I love you.

 

 

Japhy       

It is a wet and dreary day and I’m feeling sad.  That doesn’t happen to me very often.  Waves of sorrow are falling and I am tripping over them.  I am reminded that this is my old friend, grief.  I want to hide away in my room, close the door to this day and cry.  I’ve already given in to tears a few times today.  In moments when no one was looking I stole away, gave in, and let them roll out and down my cheeks.  Tears of woe, aloneness, disappointment, and letting go.  There is much to be sorrowful about but today it is more than I can contain.  The thing that puts me over the edge on this day is visiting Japhy, my friend Jan’s cat who so gracefully is leaving his body.  I’ve never been much of a cat person but Japhy is different, ~ he has taught me about loving a cat.  He’s our J. Boy and Maizy’s best cat buddy and romp mate who would always come to my special whistle.  I just came from visiting him, most likely for the last time, and as I laid with him whispering in his ear about how much he has taught me, petting his once plump and vital body which is now deflated and sharp, I softly whistled his special tune and he began purring.  His little life summed up in that moment, in a tender comforting purr, a final gift to me.  Thank you J Boy.  

It breaks my heart to walk away from him today.  Ouch….  .         

 

 

A Day in May

 

Sleeping with her auntie Shannon

 

 

There have been few free moments in the last weeks. I have kept busy and comfortably distracted with the business of the yard sale, work, and life, trying to balance it all. There has been little time to think about the impending surgery that is approaching. It does have a way of hovering over me and my life and letting itself be known when my guard is down but my relationship with it has been changing. We are becoming friends. It is no longer a new and shocking detail that tears through my heart and shakes me like a bolt of lightening every time I think about the details. I’ve had time to sit with it and let the reality set in, absorb it into my mind, body, and life. I seem to have found “center”, a place that allows my heart to be open, my daily routine to be somewhat normal, and within that I can accept and even practice embracing this fate of multiple surgical procedures. I have been able to do this because it is no longer about “procedures”. I have found myself on a journey that is enlightening me, teaching me to hold close the things and people that are essential to my healing and growth, and to let go of what has become habit, that does not support, serve or expand my life. It has been my spiritual practice to find the silver and gold linings and there have been linings of love all through this journey that are profound and awe inspiring.

Have you ever had this experience?  You could be anywhere and someone comes your way with an unbelievably cute, smiling baby or an adorable, cuddly puppy and somehow your defenses immediately disappear, you become a big goo ball, babbling off baby talk and reaching for the delightful bundle of cuteness with no inhibitions. You don’t know the person holding the little darling but there is an unspoken consent that it is just fine and, actually, welcome behavior to fawn over that kind of innocence. I think we are drawn to “the essence”, to what we are all a part of and where we are from. We are drawn to Spirit.

I have had that experience quite often with the many dogs and children in my life and have always thought that if we could all treat each other, or at least greet each other in the same way, with our defenses down, with open hearts, seeing and acting from that place of love, knowing the true innocence of one another, well that would sure be a different world wouldn’t it?

Well, I’m beginning to see that something similar has been happening to me lately. The way in which people are approaching me, the warm loving kindness that people are extending, with that same sense of natural, uninhibited, open heartedness from people I know well but also from people that I don’t know well and who know me peripherally or just know me from hearing what is my story at this point in time. For some reason my situation inspires some people to treat me with this sweet abandon and for this I can see the beauty and accept the tumor with grace and gratitude for the lessons in love it offers and infuses into my life everyday.

Thank you for your loving kindness.

Love at the Fundraiser Yard Sale

 

  

Life has been very busy. We had the fundraising yard sale on Friday. (Saturday was canceled due to the weather and we will continue the sale soon…TBA) Thank you all who have donated and stopped by to shop and just be supportive!!! The sale itself was very successful and everyone had so much fun. The sun was shining, love was flowing and there was such a sense of community. It was heart warming. Another sweet thing that happened was a photographer from the Albuquerque Journal came to take photos of the event. I spoke with a reporter that same day and have an interview set up for Monday afternoon. I think she is going to write an article about me. I’ll keep you posted….

Through all of this excitement I am trying to say calm. The headaches I was having are coming less often which makes my life easier to navigate. To make a long story short, and after meetings with several doctors, etc… I’ve decided to wait it out and have the surgery later in the summer. It makes sense to do it now that the tumor is visibly growing, but the insurance that I have been able to get, that will cover a chunk of my expenses, requires that I wait 6 months and that is up in August. My surgeon and I have set the date, Tuesday, August 18, 2009.  It makes me feel safe to have a date. This has been an emotional ride and when I am alone, often in the night, far away from things that need to be done and people that I need to be engaged with, it all hits me. So far there has been so much support, love, hugs and holding of hands down this path. My friends have been holding me up, keeping me sane and soft. I am in awe of the efforts that everyone has made… And it is in those moments when I am alone that I am fully aware that I will be facing the surgery, and waking up without some of what makes up my face, plus what makes me talk, swallow, and eat, alone. It wakes me up, grabs me and shakes me around sometimes. But, as all the doctors tell me, as if it were a cold I’m getting over, “you’ll be fine”.  Somewhere inside I’m sure I will be fine.  I’ll be fine  AND between now and being “fine” I will be confused, terrified, alone, in pain, sad, sick, supported, happy and many other feelings. I just wish they would acknowledge all of those things in between.

Doctors, I guess they could use a little hand holding themselves….