The Cold, Harsh, Reality.

I have vacillated back and forth about whether or not to post a photo of my mouth and the cavity that the surgery has left.  When people see me they tell me how great I look and because they can’t see the damage inside they don’t have any idea of what is going on internally, physically and emotionally.  I actually had one person tell me that she thought since the surgery went so well and I was up and around that it hasn’t really been any big deal.  This hurt me deeply and to this day she hasn’t ever asked me how I am.  I realize it is because of her own fears but it still hurts.  I focus on everyone else and their continual love, support, acceptance and empathy for my process.

It has taken a long time for me to come to grips with the feel of my mouth and the foreign objects in it all the time.  Then came the day that the objects were taken away.  The shock that came with the removal of the obturator, from my perspective, was very disturbing.  I was not warned of two important details.  One, that I would not be able to swallow and whenever it is out I have to wipe away, with tissue, any saliva that forms and two that my voice would be so radically changed. The hollow, cavernous, flat sounds that came out of my mouth were not mine and it was frightening, to say the least.  Emotionally this was a harsh blow.  Tears ran down my cheeks as I was trying to take all of this in.  My mother, always by my side through every minute of this, kept telling me to keep my tongue down, don’t explore above….  I felt trapped in my own little hell, there was no turning back and this was my new normal.  I had to pull it together and learn how to insert and remove the obturator.  Somehow I did and for several weeks I draped a curtain over my bathroom mirror so that I wouldn’t see my face, caved in and toothless.  Then I moved to peeking once in awhile, very briefly taking it in.  And currently, and after lots of pep talks with myself, I have worked up to taking down the curtain and  inspecting some of the areas, not quite all yet….  So, because I am at this place of acceptance I feel that I need others to accept this about me.  There is enough fear served up with having this hole in my head.  I think that sharing my perspective from the inside out, emotionally and physically will help me to accept it even more.  I hope it is helpful for you to see the other side.  Thanks.

Me, minus the tumor

Harsher yet

The Cover-Up

Finding Normal

Maizy Love

Hello my friends.  I am so, so grateful for your help, for your love, support and hand holding.  The surgery went so well and was much shorter than was expected, hallelujah!, what a blessing.  And the personal care that I received in the hospital from my caring friends was really quite magical.  I have the sweetest memories of all these loving faces approaching and descending, and soft words of love and encouragement swimming through the air as I floated in and out of consciousness.  Each loving presence came and went and I felt continually lifted, held in a protective embrace.  I feel so fortunate.

It has to be said, the hospital staff, for the most part, was invisible, inferior and in some cases downright uncaring.  Had I been on my own the experience would have been quite traumatic and very frightening.  That saddens me for the people that are alone.  Hospitals are no place to rest and recover, that is for sure..

Each day I am improving, my mouth becomes more of a friend to me, I am recovering some of my stamina and am on my way back to some sort of normal.  The fog has lifted and I’ve been going out for short excursions.  I am very grateful that from the outside I look so normal, just a slight upward pull on the left side of my lip that whispers the story of what goes on inside.  And my speech is slightly different, slower, taking more energy and awareness with pronouncing certain words.  The obturator (the word for the prosthetic I wear in my mouth that covers up  the seemingly enormous hole in my head) has been likened to having a horse bit in your mouth and I concur.  A very tight bit that is only taken out to clean periodically, which has been physically and emotionally difficult, but is becoming easier as I learn to accept it as my normal.

Thank you, thank you.  I love you.

It Takes Courage…

Waiting for Dr. Wagner, the prosthedontist

[Shannon here]  Carrie passed a couple of milestones in the last two days:

1.  Under sedation, Dr. Traub removed all the nasty old iodoform packing from her wound site and removed her stitches.

2. Carrie faced her panic and fears and learned how to remove and replace her obturator.

These steps may seem small, but they were daunting and very scary.  The packing has been inside her scooped out jaw and palate since Aug 18, when she had her surgery.  It was permeated with antibiotic material and flavored Carrie’s every bite of food.   After a week of this, the flavoring was further enhanced by the very old blood, mucous, and ?? leaking out from the obturator.   (Imagine eating a savory soup flavored with polysporin and the minute debris of 10 days of food decaying in your mouth, and you get the idea of the experience.)

The removal of the obturator happened at Dr. Wagner’s office, the doctor who makes these amazing prosthetic teeth cum palate devices.  Since the surgery, Carrie’s tissues have shrunk a bit and so Dr. Wagner needed to check the fit and make adjustments.  He told Carrie, “Now, you can’t leave here without being able to remove and replace the obturator because you need to take it out 3 times per day to keep it clean.”

Obturator removed, showing how upper mouth sags where teeth and jaw were removed

It takes losing part of your palate to realize just how dependent you are on it to swallow and talk.  Without a palate, there is no ability to suck or to form words as we learned from toddler age.  The first time Dr. Wagner removed the obturator, Carrie felt a real panic because she couldn’t swallow.  But she pushed past her fears and put the blag-dag thing back in on her own!!!

I think that is raging raw courage.

The surgery site is still somewhat tender and raw-feeling, so eating and obturator removal is done delicately.  It will take another couple of months to fully heal, during which time Carrie will be visiting Dr. Wagner frequently for adjustments.

There is the question of whether Carrie will choose to have reconstructive surgery done in a year’s time.  If she gets comfortable enough with the obturator routine, and if she prefers not to go through another possibly more painful operation (involving the jaw again and removal of bone from her hip for a bone graft), then she could conceivably just live with what she has.  Time will tell.

Carrie inserting obturator for the first time!

Oh, and by the way:  No sign of tumor cells per her pathology report.  Hooray!!!!!

Follow-Up Visit

[Shannon here again]  Carrie had her week-the-surgery follow-up with her maxillofacial surgeon, Dr Stephen Traub.

He said she looks great (we agree) and he was pleased with the brief exploration he made inside her mouth.

In another 6 days, Carrie will go back to him to have the packing removed from inside the wound area.  That will require some sedation.  But overall, that’s good news, because the packing material is saturated with antibacterial substances that create a really unpleasant taste in Carrie’s mouth.  Then, the next day, she will go to her prosthedontist to have another version of the obturator made, as the removal of the packing, shrinkage of tissue, etc will require a new fitting.

All the news was good, so on our way home, we stopped at the Taco Cabana in a celebratory mood and had some wonderful tacos.  Carrie had a delicious bowl of bacon-infused refried beans.

And then home for a well-deserved rest.

Tomorrow I’ll be returning home to Oregon and my own blog Chipper’s Alley.  I was so glad to be here during this stressful time, to give my aid where I could.  I’ll miss everyone here, including all of Carrie’s wonderful friends who helped so much to make this time very special indeed.

Thank you, everyone!

Protected: A Very Good Day Today

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Carrie and the Terrible, Horrible, No Good, Very Bad Day

The Queen of Nausea

[Shannon again here:]  This was not a very good day.  The jaw pain last night was more severe than it had been in the last few days, so Carrie tried a stronger pain medication her doctor had prescribed for her for “bad pain.”  The first dose went well; the second dose also went well….until waking up at 7 am.

Then the nausea ride began – and continued well into mid-afternoon.  This is the kind of nausea that turns your guts inside-out (or so it feels) and leaves you feeling helpless and sick as a dog.

It seems this was a case of taking too strong a medication, which toxed Carrie’s system.  (This trait is common amongst all the Bagley kids.)

With ministrations from loving friends and various remedies used over the span of the entire day, what began as a terrible, endless day of nausea torture turned into a pretty good evening!

By early evening, Carrie had passed through the worst, ate 2 scrambled eggs, chased by lentil soup.

Scrambled eggs!

Good going, Carrie.  I think we’ve turned a corner!

Carrie is Back Home!

[Shannon here]  Great news!  After a pretty exhausting day for Carrie, she was released from the hospital to come home today.

She had a good day yesterday – even laughed and joked extensively with a male nurse who enjoyed the experience so much that he kept saying he was sorry to see her leave!

And she is eating soft foods and doing well, though there is pain that comes and goes.  It is very tiring to work through the discomfort and the logistics of learning to eat, drink, suck, and swallow with different sensations.

Here she is eating for the first time with a spoon – a homemade smoothie with lots of good nourishing stuff blended into lots of fruit.

Last night, Carrie had considerable pain in the calf of one leg – she has large, ropey varicose veins there.  So there was a bit of a set-back and worry about blood clots.  After a doppler test was performed this morning, it was discovered she does have a deep vein thrombosis (DVT).  Fortunately, the vascular doctor who saw her felt it was mild enough to send her home with instructions about wrapping the leg, keeping it elevated, and applying warm heat.  He will see her again next week to follow up.

Since Carrie has been home, she is catching up on much-needed undisturbed (and quiet!) sleep.  With a few brief bouts of consciousness to eat and drink and take pain meds, she’s been sleeping all afternoon and early evening.  There was no possibility of sleeping while she was in the hospital.

So, back to home sweet home and her healing – and to her little dog Maizey, who was overjoyed to see her.

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.