Sunday, December 29, 2013

To God, Papa Don, A Dios

Jay's dad died on Friday morning, December 6, at 84 years of age.

He lived in Mexico for many years, so we were not with him at the time of his passing, but his wife Carmen was.  By her account, it was peaceful, and we are so glad.  We were blessed to have a visit from them less than two months ago, and were able to appreciate that it was probably the last time we would see him, at least in this world.

For some reason we cannot explain, Joey called him Papa Don, right from the start.  All the other grandparents are called Grandma or Grandpa, but Don was "Papa", by Joey's young authority.  The kids loved visits from Papa Don and Carmen even though they were few and far between.  Some of the kids  (Sam most recently in July) had the chance to go visit him in Mexico.  Jay talked to him every week, if not more often.

This is the first grandparent our kids have lost (yes, they are fortunate in that), so it was a shock for them.  Nearly all of them cried and that was very hard to see.

Jay and I took a quick trip to Guadalajara last week to attend his funeral mass and to inter his cremains.  His earthly body is at rest in a beautiful church right on the shore of Lake Chapala.  I am so happy we were able to go, as the mass was beautiful, with a children's choir accompanying and absolutely stunning flowers.  All of Carmen's family members were there and it was very clear how much Don had been loved and cared for by them all.  That gave us great joy and comfort to see.

Don gave Jay many gifts...his love for good bread, wine, opera and entertaining.  He also taught Jay to be sure the person working behind the Italian deli counter, if not the owner, was actually qualified to make his sandwich.  To this day he questions young employees on how exactly they plan to put together his meal and how thin the meat will be sliced.  Lord help them if they mention mayonaise at any point during the conversation!

Don was the first in his family to attend college and he graduated proudly from USC.  Up until the very end he loved his Trojans and never missed a televised football game to my knowledge, even after his move to Mexico.  He loved to talk with people everywhere he went about every topic under the sun and enjoyed little more than a leisurely meal with deep conversation.  He was fearless, retiring to Mexico knowing little of the language and not a soul in the city he chose.  He became fluent in Spanish entirely on his own and figured out how to buy property, take care of his residency requirements and make a faithful circle of friends.  Not many people I know would have that kind of bravery. He built a nice life for himself there and enjoyed his last years very much.  We wish he hadn't moved so far from us, but are very happy that he was content.

We will have a memorial mass for Don at Sacred Heart Church in Lancaster on Saturday, January 11 at noon.  All are welcome.

We will miss you Don, but are confident that we shall see you again in the kingdom of heaven.  May you rest in peace.

Tuesday, November 19, 2013

Time Flies When You're Having Fun!

This week marks four years that I have been living with metastatic cancer.

The most remarkable thing about this (well, OK, maybe not the MOST remarkable), is that I completely forgot my own Cancerversary!  A dear friend, who happened to be with me the evening of my diagnosis but now lives far away, emailed me and reminded me!  For the last three years, I have been counting the years very carefully, having a minor celebration with my family each time I hit another year.  So imagine how shocked I was to realized that I hadn't even given it a thought this year! Just goes to show how life goes on after awhile, with the regular cancer treatments becoming as normal as dental cleanings and the side effects just a part of who you are now.

The REALLY most remarkable thing is that I am still here and doing so amazingly well that I couldn't even be bothered to remember such a significant date in my life.  When I was diagnosed, my doctor, wisely, would not give me an expected life span.  I later learned that only 20% of Stage IV Breast Cancer Patients are alive after 5 years.  Now, I don't want to count my chickens before they're hatched, but I am quite hopeful that a year from now I will be a part of that 20%.  Did I mention that patients who receive an Omaya Reservoir (a brain port) survive, on average, 28 days after receiving it?  Mine was put in two years ago this month.

Clearly, there is more than medical technology (although I certainly don't discredit that!) going on here.  As anyone who has read this blog for awhile well knows, the day I learned I was metastatic (and gravely ill) I was given a prayer card for Don Alvaro del Portillo, the successor to Saint Josemaria, the founder of Opus Dei.  I began asking for his intercessory prayers that day and most every day since.  During the past four years he has not only become Venerable, but will be beatified in 2014, as Pope Francis recently announced.  And the Vatican doesn't even know about me yet!  Since receiving that card I have read all about his life and have read many things he wrote.  I have no doubt he has God's ear and has been whispering pleas for me all this time.  Thank you, Lord, for listening!

And to those many, many beautiful souls that have been petitioning God on my behalf, either directly or through the intercession of others, I thank you for the hammock of peace that you have placed me in during this time of ups and downs.  Prayer works, it really does, and I thank you from the bottom of my heart for every prayers said on my behalf.  I pray for you, too.

I also pray for the 80% that will not survive five years.  I am well aware that these are fallen soldiers in this battle, from whom many things are learned that benefit those of us still living with cancer.

Ironically, I am writing this from the infusion room where I sit receiving my every-three-week Kadcyla and my Intrathecal (in the brain port) Herceptin.  The advances made during the last ten years in cancer treatment are allowing people like me to live a longer time with a better quality of life.  What I am really hoping is not so much that I beat the odds, but that the odds change significantly for Stage IV patients.

From where I sit (literally, in my infusion chair), I am very hopeful for the future!


Wednesday, October 23, 2013

Never Again!

Well, maybe one more time.


Meet Montana, the newest Di Silvestri dog.  She is a rescue dog, five or six years old and very sweet.  She doesn't have a whole lot of manners yet, and the cats despise her, but we love her.  We just couldn't help ourselves.

We were considering getting another dog sometime in the next few months, but we had all agreed that we did not want another Mastiff.  Although they have sweet dispositions and are great with kids, they tend to have health problems and don't live very long.  We did not want our kids to have to suffer another loss so soon.

However.  Sometimes things you are not looking for find you.  Montana was taken from her abusive owners by some women who train dogs for movie roles.  One of these women is a friend of the mom of one of Julia's friends.  When she heard about this dog needing a loving home, she remembered we had recently lost a Mastiff and were one of the few families she knew that was well-set up to receive a rescue dog like Montana.  Someone is almost always home, there are lots of people to pay attention to her, and we already understand the character of these large but gentle beasts.  So, they brought her over to meet us.

One minute was all it took.

I was the most resistant of all to the idea of another Mastiff.  However, when this scarred, broken and skinny dog came up to me, shaking like a leaf, she buried her head in my lap and found her way right into my heart.  She is my dog, more than anyone else's, and follows me everywhere I go.  She is not allowed upstairs because she has an unhealthy interest in the cats, so I have moved most of my desk operations downstairs to spend more time with her.  She wants to be a lap dog and is absolutely starved for affection.  When I stop rubbing her head, she pushes back into my hand and tries to get between me and anything else I am paying attention to that doesn't include her.

This poor dog was so mistreated.  She was chained to a fence most of her life and had terrible scarring around her neck from trying to pull away.  When the trainers took her from her owners she had a foul smelling infection and a broken rib.  She is fairly healthy now and prances around on her leash, but still has a lot of weight to gain (and doesn't eat much yet, which concerns me a bit) and plenty of manners to learn.  I am finding it is difficult to teach an old dog new tricks, though it is nearly impossible to get mad at her since no one ever taught her any better.  She is completely house broken, thank goodness, and doesn't bark much.  She is definitely a keeper.

We won't have her for long, given her age, but she is an unexpected blessing for us right now.  You know what they say..."If you want to hear God laugh, tell him your plans."  Montana was not in our plans, but here she is!  And we are glad.

Monday, October 07, 2013

Thursday, October 03, 2013

Aint Nobody Got Time for Dat!

Here is the long-delayed revealing of what is happening with the tumor in my femur...in case anyone is interested.

After an X-Ray and an MRI of my right proximal femur, it appears that there is no risk for fracture and that the tumor is deep in the marrow, which may be painful but is not likely to break my bone at this time.  It is a fairly large tumor, 3 inches long.  Radiation was recommended for pain management.

Not too long ago I would have jumped right on the radiation table and been ready to kill that spot, but things have changed.  My attitude toward this cancer has become one of more or less peaceful co-existence rather than my former desire to kill, kill, kill.  Don't get me wrong, I would be thrilled to see every last bit of it gone from my body, but since that is unlikely to happen, I am working with what I have.

Yes, my leg hurts, sometimes a lot, but many days it doesn't hurt at all.  After I verified with my oncologist that her recommendation to radiate was for pain only and not for a medically necessary reason, I happily declined.  I've become relatively casual about cancer in the bones, because it is not going to kill me.  Soft tissue organs are another story altogether, but for now all of those except the brain are totally clear.

I am way too busy to deal with radiation fatigue right now.   Fall is beyond crazy, with three football teams, a competitive gymnast, and two soccer teams, not to mention confirmation prep, two scout troops, band, choir, reading club and four different schools!  Throw in a husband who is gone more than he is home lately (not really complaining about that, we are blessed he has a good job) and you can see that I CAN NOT get sick.  Or tired.  Or spend 14 days straight driving to LA for radiation. There is just no way.

So, I have made a pact with the cancer:  Don't bother me further and I won't radiate you for now.  Good deal for us both, I think (though I am still waiting for confirmation from the cancer that it is on board with this).  I am very happy to be in a place of peace with this disease where I can choose quality of life over trying to completely eliminate it at any cost.

What the cancer doesn't yet know is that I am going back on TDM-1, now FDA approved and called Kadcyla.  The drug that worked so well for me at first diagnosis on a clinical trial is back in my life and I am really excited!  I was taken off the study when my brain mets appeared (even though it is not meant to cross the blood/brain barrier) but now that it is a real, marketable drug, I am hoping it does the same thing it did the first time I used it.  I hope it will knock back these bone mets so I don't need any radiation at all.  Sorry, cancer, but all's fair in war, right?

So that's the latest.  Everybody got time for dat!

Friday, September 27, 2013

She's Ready, Promotion, She's Ready, Promotion!

(Only Sponge Bob fans will truly appreciate this title)

At Valley View elementary you only have a parent/teacher conference if you or the teacher requests it.  So when I received a request from Natalie's teacher, I thought, "Uh-oh...something is not going well!"

Imagine my surprise, then, when she recommended that Natalie be promoted out of Transitional Kindergarten (which is for 4 year olds born between Oct 1 and Dec 2) to regular Kindergarten.  She is doing so well that her teacher thinks she should move up!

My plan was to send her to TK this year then to regular Kindergarten next year.  As you may recall, I chose TK over a second year of preschool because I thought she was ready.  I guess that was a good decision.

I told her wonderful teacher of this plan and she said she would be surprised if Natalie needed to repeat Kindergarten. She offered to write up testing results and a recommendation attesting to her readiness for first grade at the time of her application to Sacred Heart if appropriate.

I have mixed feelings about this, but am mostly leaning toward the happy side.  I know she is sharp and that she likes to be challenged.  I certainly don't want her to fester and grow bored when she is so eager to learn.  On the other hand, I skipped a grade myself and graduated from high school at 16.  I grew up a little faster than my peers and am not sure I want that for Natalie, although with a December 1 birthday she will not be nearly as young as I was.  I'm sure the correct answer will be obvious come Spring when I need to decide.

Whichever way it goes, I am happy she was asked, so I just had to share it.

Saturday, September 21, 2013

Puzzlement

Here in Lancaster for several years:


Recently opened right across the street:


How do you choose?!

Friday, August 23, 2013

Mass Confusion

Scan time again already!  I've just received the news on my tri-annual Pet/CT scan and my bi-monthly Brain MRI.

The news this time is mixed, but basically good.  My lungs, liver and abdomen are all clear.  On the other side of the ledger, one of my brain tumors has slightly increased again (2nd scan in a row) and the previously noted femur tumor is highly active, yet presenting as if it is confused about who and what it is.

A month or so ago I started having what I thought was hip pain.  As it turns out, the pain is actually coming from the bone lesion on my right proximal femur.  I mentioned it to my oncologist and since I already had a PET/CT scan scheduled for the following week, she decided to wait and see what it showed.

I was not surprised at all when the PET came back with news that the femur lesion was worsening, both in size and in intensity.  That lesion has been hanging out for awhile but has never caused me pain until now and, in fact, showed healing four months ago.  The strange thing is that the PET significantly flagged this spot, yet the CT didn't even mention it,  only noted another lesion on the sacrum that seems to be healing.

My doctor sent me right away for an X-Ray to see what is going on.  The X-Ray was inconclusive.  There is no evidence of a pending fracture (yay), yet there is a "suspicious area" nonetheless.  Our next step is an MRI of my right upper leg and hip to see what is really happening.  I don't know why this is proving so difficult to nail down but I am definitely anxious to settle the matter.

This is the first real veer off the healing track that I've had in quite some time and I continue to feel very positive and optimistic about where I am overall.  As I've mentioned often, bone mets won't kill me, just bother me.  Nevertheless, I am feeling the winds of change and believe more radiation and a medication adjustment are in my near future.  Not great for my energy level but certainly worth trying to beat this back before it turns into a raging wildfire.

Here's hoping that the brain tumor stops its slow growth and that we can get a clear picture of what is going on in my leg!

Wednesday, August 21, 2013

The First Day of the Rest of My Life

It's official.  The preschool days are behind me.  Today is the first time in 15 years that I have not had a child at home during the day.  I never thought it would happen, but somehow it has.  I now have six hours, five days a week. All. By. Myself.

YAAAAAAHOOOOOOOOO!!!

Don't get me wrong, I really love my kids.  I look forward to spending time with them, especially with one or two of them at a time.  I rarely go anywhere without inviting a subset to come with me for one-on-one or two-on-one time.  I am a mother who prefers summer to the school year simply because we can hang out without the pressure of homework and packing lunches and getting seven children out of bed, dressed and organized properly before 7:15.  I'm exhausted just writing it!

Nevertheless.  I am looking at my desk piled high, baskets full of rarely-used toys and drawers full of clothes that no longer fit and I am SO EXCITED that I finally have time to devote to organizing my home!

Mostly.

If you know me, though, you can probably guess the very first thing I did when faced with this reality. That's right, I got fingerprinted, TB tested, and Virtus trained so I could volunteer at their schools for the first time ever.

And maybe I'll actually get organized too.


Tuesday, July 23, 2013

World Travelers

My kids are really getting around this summer.  One after another, I have seen them off and welcomed them back from their sometimes exotic locales and wonder how they got to be so lucky!

First to go were Lindsey and Julia, who were fortunate enough to go with their grandmother (Jay's mom) on a twelve day cruise from Venice, Italy through Croatia, Greece, Egypt, Israel and other exotic ports most of us will probably never see.  The trip dovetailed nicely with things they had learned in school, particularly about Egypt and the Holy Land, and our entry hall table is now adorned with a photo of the girls riding a camel.  Fun!

Sam went next, on a road trip with his grandmother (my mom) to Carlsbad, New Mexico. There he visited his great uncle, rode his go-kart around the ranch, canoed in the pond and generally ran around like an 11 year old boy should.  On the way, he visited pueblos, saw the caverns and the painted desert and plenty of cacti.

Following this,  Sam (again!) and Jay were off to Guadalajara and Puerto Vallarta, Mexico.  They had a great time rappelling through the jungle, parasailing, and visiting with Jay's dad and his wife who live just outside of Guadalajara.

Meanwhile, Julia went to a week of gymnastics camp at Woodward West (a foreign land inhabited by extreme sports enthusiasts).  Soon after, both Lindsey and Julia went to Pathfinder leadership camp just outside of Idyllwild/Mountain Center where, unfortunately, their week was cut short by an evacuation due to the massive wildfire burning just a few miles from their camp.  I tell you, the excitement never ends around here.  Nevertheless, they managed to have a wonderful time anyway and are looking forward to going back next year.

Last but certainly not least, Joey is currently in Rio de Janeiro, Brazil attending World Youth Day with a group from his school.  By what I can gather from his texts and the Facebook page the group is updating along the way, it is the experience of a lifetime.   I am so happy he can have this chance to be surrounded by at least a million other young people from all over the world who are on fire with their faith and I pray that the fruits of this excursion last a lifetime.

For my part, I am happy to be at home (I've done my share of running around this year as well, as you know!) feeding whoever is here, keeping an eye on swimming children for hours on end, doling out popsicles by the handful, and watching lots and lots of movies with my kids during this blessed time of no homework.

Also staying put with me back at the homestead, Tony is feeling like he is old enough to have a trip of his own as all of the older kids have had.  Having just turned 8 he may be almost ready, but not this year.  Bella and Natalie haven't yet begun asking about when they might have a turn.  They are content for now to have a little time alone with me each week (breakfast out, a trip to the store, etc.) and to have friends over to swim and spend the night as often as possible.

School will begin again in just two weeks for three of the kids, and I am already mourning the passing of this very short summer.  Where did it go?

But, oh, the places they went!

Tuesday, July 09, 2013

Rest in Peace

Trooper Di Silvestri

August 2006-July 9, 2013


Dear Trooper,

Today you left us and went to another place where good dogs go.  I'm not sure where that is, but I know that, wherever you are, you are feeling much better than when you were here.  The last few days have been rough on us all, but especially on you.  You were miserable, and I am happy that you are no longer suffering.

When you were full of life, I liked to go on and on about how disgusting you were with your viscous drool, snoring and terrible odor, but I really did love you a lot.  You were a wonderful dog and always so careful with my kids and friendly with people who came to visit.  I will always remember how the greatest gift you could bestow on someone arriving at the house was a stuffed animal or shoe.  You always seemed so proud to bring over this offering, although you never voluntarily gave it to whomever you presented it.  I had to wash many, many things that were covered with drool due to this sweet quirk of yours.

Last night, all the kids but Sam got to say goodbye to you, and I am so glad they did.  Sam is in Mexico right now with the person who loved you most on this earth...Jay.  They are so sad that they could not say goodbye, but I am also glad that they did not have to see you suffer as the rest of us did.  We all cried today in sorrow over losing you.

The last few weeks have been pretty humiliating for you, I know.  So, out of respect, I choose only to remember you as the strong, happy dog who accompanied me on walks through the desert, chasing jack rabbits in a spectacular burst of energy only to fall back, exhausted, after a brief engagement.  You always seemed so surprised that you couldn't catch one!

I am honored that I could hold your head while you went to sleep for the last time, and kiss your furry brow as you departed this world.  Thank you for being our dog.  We will never forget you.


Tuesday, July 02, 2013

Quotes of the Day

I know you love these...

During the 45 minutes I spent getting a massive dreadlock out of the bottom (most sensitive) layer of 6 year old Bella's hair this afternoon, she was inquiring about my progress.  I explained that I had sectioned it to make it easier to get through, but that now we were working on the nasty, snarling beast of all the sections.  So she says...

"You mean the teenager one?"

Priceless.. right?!


As an added bonus,  I have a keen observation from the teenage realm to share as well.  After several friends spent the night this weekend, Lindsey proclaimed, "Things have really changed.  When my friends came over before they used to say, "What do you want to do?" but now the first thing they say is, "What's your Wi-Fi password?""

I love my kids.

Oh, and by the way, I love my husband too.  Happy anniversary, Jay (yesterday)!  18 years and still the best decision I ever dragged you into!

Friday, June 21, 2013

Theology Class

Greetings from the general area of Culpeper, Virginia!  I am on a six day workshop at the beautiful Longlea Conference Center in a land of moist green hills, rivers and, yes, giant bugs.  This desert dweller is not used to any of these things and has passed many a night here staring in fascination at the fireflies glowing off and on outside of her windows.  Seriously, I have never seen fireflies before outside of "Pirates of the Caribbean"and I find them absolutely fascinating.

I am quite lucky to be receiving a moral theology course from a fantastic and brilliant priest, in fact, the same priest who taught me theology a year ago outside of Boston.  As my head is much clearer this year, I am in a better place to absorb these big ideas that are so important to truly understanding Catholic teaching.

This is the back view of the house where most of the activities take place.    A great environment to find peace and understanding, don't you agree?


And this is the view from those steps you see:


And have I mention the food?  Three beautifully prepared, delicious and perfectly presented meals each day make this a busy mom's heaven on earth.  The joy of being so nicely cared for reminds me to care for my own family better.

It would be enough to come for the surroundings, but that is not even close to the best part.  The truly amazing 21 women I have met here, the things I have learned about our faith and how I can apply them to my life, and the encouragement I have received to continue in my swim upstream in today's cultural river are the real treat.  I would be lost without the spiritual formation I receive from Opus Dei.

I have reached a point with my illness where it is no longer the overwhelming drama it once was.  It has gradually taken its place as just another one of the various characteristics that make me who I am: wife to the best husband ever, mother of seven, likes to sing, dabbles in blogging, living with cancer, has a giant dog, enjoys cookies...and so on.  This is a blessing indeed.

So now that my spiritual life is tuned up and my health is improving, my next challenge is exercise.  Sigh.  Even when I was perfectly healthy, I avoided it at all costs.  Nevertheless, my doctor, who has been right about everything so far, seems to think it is important that I introduce myself to it.  Something about healthy cells and rehabilitation, energy and cognitive function, blah, blah, blah.  Redouble your prayers, people, because I'm gonna need them if I have any chance at succeeding in this endeavor.

Tomorrow I leave this little slice of heaven and fly home, refreshed and determined anew in my vocation as wife and mother, to my true treasure on earth: my family and friends.

Saturday, May 25, 2013

An Apparent Rarity

At the end of April I put Sam in a new school.  I know it seems a little crazy to make a switch so late in the year, but he was not thriving where he was and I didn't see the point in prolonging it until the end of the year.

Good decision.

In the last few weeks my old Sam, who had been replaced by an angry, sullen version of his former self, has returned.  He is smiling, happy, enthusiastic again (of course not all the time, but much more generally).  While he may never love school with all his heart, he has now found things about it to embrace.  A change of scenery was just what he needed.

This is a good reminder to me that schooling the children has to be an 'every child every year' decision.  It is not about what is easiest for me (one school), but rather what the children's individual needs are.  It would be my preference to have all my children in Catholic school from Kinder through 12th, but alas, I am forever learning that my preference is not always the best way.  And that is a good thing, as it keeps me open to the inspirations of the Holy Spirit in my life.

As many of you know, Jay and I have been all over the board educationally (no pun intended).  When Joey was not succeeding in Catholic school I home schooled him for two years.  When that was not academically successful (though it was key in rebuilding his confidence, which was the most important objective at the time) he moved to public school.  There he stayed until this year when he went to Paraclete Catholic High School and fit in perfectly.  I couldn't have predicted that path when I saw him off to his first day of Kinderarten 10 years ago, but it was right for him.

Tony, with a summer birthday, spent one year of Kinder at the local public school (which, blessedly, is excellent) and then went on to repeat Kinder at our Catholic school.  Natalie will do the same, beginning this fall, as she has a December birthday.  I opted for Transitional Kindergarten rather than another year of preschool as I believe she is ready.

Now Sam has transitioned to public school which is a better fit for his way of learning.  Julia, too, will be giving public school a go next year as a fifth grader.  Yet, Lindsey will graduate from Catholic school next year having been happily rooted in her class of 36 students from Kinder through 8th.  Tony and Bella also continue in Catholic school.  To sum this up, next year I will have seven children in four schools, two Catholic and two public.  Yikes!  Yet, though I may go broke from driving them all over the valley, I am confident it is right thing for each of their individual needs and that, as a result, our home will be a more peaceful and happy one.

This was all clarified for me yesterday when I dropped Sam off at school.  His school has a wonderful greeter  who opens the car door for the kids and makes sure they get in the gate safely.  She is always cheerful and wears funny hats on holidays, and it has become a highlight of our day to see what she will be wearing or say when we drop off.  As Sam got out of the car she stuck her head in the car and said, "What a pleasure it is to see both of you smiling and talking together when you pull up.  You'd be surprised how many people seem angry when they drop off their children."  That stopped me for a few reasons.

First, I realized how wonderful it is to have Sam back to his old self.  That is exactly what we were doing, talking and laughing, and it had been awhile since that had happened so naturally given how unhappy he had been for so long.  It validated the decision I had made in an instant.

Second, I was struck by how sad it was that this merited a comment at all.  How many carry that attitude throughout their day?  How many times have I used our drives to lecture the children on what they need to do better that day rather that setting a positive tone for their day?  It made me much more aware that my attitude in the morning can set the tone for the days of eight other people.  How important it is for me to be cheerful!

Thank you, Mrs. Wyatt of Valley View school, for your observation, which has enlightened me this day.

Thursday, May 09, 2013

Proud Mom

Julia and two friends in her class performed a talent show preview for their school this morning.  I loved it and thought they did a great job.  If you'd like to see it, this link should (hopefully) take you to the two minute video.  Thanks to their gymnastics coach, Daniel of Genesis Gymnastics, for the great choreography!

(For those who are not sure, Julia is the one in blue shorts.)

Saturday, May 04, 2013

Objectified

Yesterday evening Jay and I were cherishing some quiet time in our room.  We asked the kids for 30 whole minutes, something of a luxury for us.  Although I'm ashamed to admit how boring I really am, I used this precious time to take a nap, while Jay caught up on some prayers.

Every few minutes we were systematically interrupted by a tapping on the door.  "Mommy?" a little voice would ask each time.  Jay would kindly respond to each tap, "Mommy is not available right now, please come back in X number of minutes (however much of our half hour was left).  The taps continued at 5-10 minute intervals.

With about 10 minutes to go, Natalie had had her fill of the gentle rebuffs.  She changed her tactic:  "Dad, can I use mommy for a few minutes?"

We both laughed hard at that.  Jay comment that our four year old daughter had just completely objectified me and we found it funny.  Where is my Christian dignity?  On vacation sometimes where my children are concerned.  Go ahead--use me!  That's what I'm here for.

Saturday, April 27, 2013

Scantastic!

As I mentioned at the end of my last post, I had a good brain scan last week that showed the two remaining lesions in my brain have shrunk "slightly".  After becoming happily accustomed to "stable", this was a complete thrill for us.  I mention this news again since I am thinking the majority of you never made it to the end of my last way-too-long post to read that news.

Now I have the news of my whole body PET/CT scan to add to this.  It was the best scan I have had in a very long time.  The long and slow march of cancer through my bones has finally been halted and mostly reversed.  All the activity in my sacrum and ribs has stopped completely and is showing increased sclerosis, a hardening of the bone lesions which is usually indicative of healing.  The only active bone lesions remaining are in my femur and T9 vertabrae.  Four months ago the SUV (measure of activity) was 6.0 in the T9 and is now1.7.  It was 5.5 in my femur and is now 2.3.  This is amazing news!

My oncologist decided to get aggressive with things after my last scan showed continuing progression in the bones.  I began taking two new medications: Xgeva, which is an injection specific to bones, and Xeloda, which is a twice daily oral chemo one week on and one week off.  Both of these have some very unpleasant side effects, but with results like these, I am newly pleased to continue taking them.

All my soft tissue organs are totally clear, as they have been since I completed my course of TDM1 (now approved by the FDA!!!) in summer of 2011.

Of course you all know I attribute this as much to answered prayers as to medical intervention.  Given that the whole time Jay has been asking for "a miraculous or medical cure", they have become one and the same for us.  This is the closest I have been to NED (no evidence of disease) in awhile, certainly since the brain mets popped up in 2011.  I thank you so very much for your continued support and prayers!

Sunday, April 21, 2013

Roam Sweet Home

It may seem like a long time since I've updated my blog (and it has been, sorry!), but I have been all over the place.  Literally!

Shortly after my last post I got into Easter preparations which, for a cantor and choir member are extensive.  Singing for stations of the cross, Palm Sunday, Holy Thursday, Good Friday Veneration, Easter Vigil and Easter Sunday kept me quite busy.  I spent close to as much time at church than I did at home for a good week!  And that was a good thing for me, as I so love to sing to our Lord.  We ended the flurry with a lovely, peaceful family Easter at home.

Then the real activity began.  The day after Easter I went down to Cedars-Sinai for my regular treatment.  After treatment I stayed in Los Angeles, killing time by experimenting with city bus routes (first time on a bus in more than 20 years...the fare went up!) until I found my way to the Grove.  I had some lunch, went to a movie and waited for my boys to arrive so we could go to the airport.

Soon enough we were on our way to Orlando.  It had been awhile since I had spent good quality time with Joey (14) and Sam (11), so it was really nice to travel just the three of us.  When we arrived at 5am (ugh) after a flight where I was sandwiched between the boys (who had boundless energy to poke each other repeatedly over my not-resting-but-should-have-been body), we drove to Cocoa Beach on the East Coast of Florida.  They boys went straight to the beach while I happened upon a daily mass beginning right then directly across the street.  Divine intervention?  I think so.

After spending a very sandy day at a beautiful beach (perfect for my skimboarding boys) we checked into our hotel and tried to catch up on our sleep.

The next day we went to the Kennedy Space Center.  It exceeded all of our expectations.  The boys were of the mind that they would rather have an extra day at Disneyland, but when we finished our tour they both agreed that it was more than worth the detour.  It would have been the perfect day had I not listened to "Siri" who directed me away from all of the signs pointing me to the space center and instead delivered us 20 minutes away to an employee back gate.  Of course we had to go all the way back around, but we did see some amazing (and eerily close) Crocodiles and a pretty impressive Bald Eagle Nest, so not all was lost.

I was pretty done by the end of the day, but as fate would have it, Universal Studios was having a Buy 2 Get 1 Free sale when we bought our park tickets.  The boys suggested we drive into Orlando--at 6pm--and use the free extra day (that would otherwise be wasted) for the few hours remaining until closing.  Since I was feeling surprisingly well, I agreed, and we had a good time getting a preview of the Island of Adventure park that we had never been to before.  We concentrated particularly on the Wizarding World Harry Potter which was a lot of fun for a family that has enjoyed the books and seen the movies, but it was really crowded so we didn't do much.  On our way out of the park we got hit by a major rainstorm and were soaked to the bone by the time we got to the car.  First item of business the next morning when we got to Epcot Center?  You got it, Mickey Mouse rain ponchos!  Rain had never occurred to us, being desert dwellers, but since it was so warm it was more fun than miserable.

The next day we moved to our hotel in Orlando, and from there the day was all Disney.  Epcot with early dinner in Japan, Disney Studios in the late afternoon into evening and The Magic Kingdom until 12:30am.  I don't know where I got the energy, but we had so much fun!  (As an aside, the doctor I mentioned forgetting in my last blog is a Rehabilitation and Survivorship doctor and has already made some really positive changes in my overall quality of life--more about that in a different post, but the changes were evident in all that I was able to do on this trip).

The following day was Universal, the original park.  That was the day I hit the wall.  As you may recall, I take an oral chemo one week on, one week off.  I had started my week on two days prior and it always hits me on the third day.  I pretty much got the kids in the gate, gave them some money and made sure everyone's phone was working and went back to the parking garage and took a long nap.  It was during this nap that I came to understand that most people locate their cars by pressing the panic buttons on their remotes.  Not the best nap I've ever had, but so needed that it was truly blissful anyway.  I met the kids back in the park, still not 100%, and made sure they had dinner after which I stayed put and said my daily prayers in the booth of a cafe, simply happy to be stationary.  We finally made it back to the car at 10pm where I traumatized the boys by having to stop the car and throw up.  But, what can you do?

Happily, our hotel was very close to the shrine Mary Queen of the Universe.  We go there every time we are in Orlando, and this time was no exception.  While the boys slept, I would sneak out to morning mass and come back ready for another day.  The Eucharist was most definitely the source of my remarkable strength on this whirlwind trip (and always is, for that matter).  The church is gorgeous and has a very large gift shop.  The Sunday morning mass featured two cantors backed by 4 or 5 other singers that were so pure and beautiful that I nearly wept with joy.  We saw Red-Ear Slider turtles swimming in the pond and watched them for a awhile after mass, as Joey has two in a tank in his room.

At about this point in the trip, an amazing thing started to happen.   My too-big-to-hug-mom-when-anyone-is-looking sons started spontaneously hugging me and saying things like, "I love you mom" and "Wow, I'm feeling really spoiled with all of this" and "Thank you so much for all we are doing, we are having so much fun!"  They were perfect gentleman and let me hold on to them when I had trouble balancing in the dark.  They previewed rides for me to see if they were too rough for my poor brain, and even when I gave them license to run they stayed fairly close and really wanted me to do whatever they were doing.  I was somewhat reluctant to go on this trip because of the physical strain it would cause me but now I know I wouldn't have missed it for the world.  It came about because my mother in law planned to take them but injured her knee.  She was kind enough to change the reservation to my name so the boys would not be disappointed.  It turned out to be such a nice time with my older boys and I am very grateful I had the time with them.  I will never forget it.

One more mega-Disney day and another Universal day and we were back home very late Sunday night, exhausted (well, at least I was).  I needed a vacation to recover from my vacation, and lucky for me I got one!  I had long before scheduled my annual retreat for the following weekend, before the Florida trip came up for me.  So, feeling a little guilty about leaving my little ones (who actually seem to miss me when I'm gone) again so soon, I drove with friends up to beautiful Trumbull Manor in Novato for a long weekend of (mostly) silent prayer and reflection.

This retreat was hands-down the best I have ever been on, for several reasons.  First, four friends came with me and I was so happy to see how they responded to the retreat.  Second, a priest I know and greatly respect but have not seen in a few years gave the retreat.  It was such a pleasure to talk with him and hear his reflections after so much time.  He gave me spiritual direction when I was first diagnosed with cancer and was a large part of the reason my faith strengthened during that time.

Third, the director of the retreat was the very same woman, who I have only met once before, that let me in to the Westfield Residence (an Opus Dei center) at UCLA the day I learned the cancer was in my liver and I was stage IV.  She was the first person I saw after I received the news, and she let me into the oratory to pray in front of the blessed sacrament.  She then gave me Don Alvaro's prayer card and thus began my prayers for his intercession (see November 2009 blogs for the beginnings of this).  I couldn't believe it when we recognized each other right away from that one-time meeting but she, also, was instrumental in getting me through that very difficult diagnosis with a cheerful and hopeful heart.  When I was done crying she gave me tea and cake and listened to me when I really needed it.  It's no wonder I found a vocation to this wonderful Work of God with examples like them to guide me there.

Last but not least, I somehow managed to stay more silent than usual during this retreat.  I do an awful lot of talking to God, but not nearly enough listening.  I found that when I settled down enough to really listen, that he had many helpful things to tell me.  Many things were clarified for me that I could not see before, and I have a deep peace as a result of that weekend.  I am truly blessed indeed.

If you are still reading this long tale, I have saved the best news for last.  I got the results of my recent brain scan on Friday.  For the first time in many scans, the two remaining lesions in my brain have both  shrunk "slightly".  I have been happy with "stable" for awhile, so I am beyond thrilled with shrinkage, no matter how slight it is!  Stay tuned for Tuesday results of my first whole body PET/CT in four months...we will see if we have stopped the march of cancer across my bones with the addition of the not-so-fun Xeloda.  It would be nice to know it is worth the discomfort!

Sorry this grew into the blog that ate Manhattan, but I had so much to talk about.  I guess that happens when you don't blog for six weeks.  Thanks for continuing to read!

Saturday, March 09, 2013

Perhaps She Has A Point

The last time I visited my oncologist, nearly three weeks ago, she was going through the usual questions about how I am feeling, what side effects I am experiencing, etc, etc.  I told her the most troublesome thing to me was the short term memory loss that I have experienced since my brain radiation.  I forget things almost instantly if I don't write them down.  If I do manage to write them down I don't remember to look at the calendar.  I am busy working on using my iPhone for reminders of important things (like when to pick up the kids and what night Sam has scouts) because I can't even remember to go to choir when it's Thursday--and you all know how much I love going to choir!

My long term memory is fine.  I can remember things that happened years ago and my times tables and all that.  I can still diagram sentences (thank goodness as I am recently in need of this skill again to help the kids with homework) and know how to find anything I need on the internet.  Its really just things in the present and recent past.  I can't remember if I took my medicine (hence, the pillbox), I can't remember if I ate lunch, I can't remember the details of a conversation I had with someone a few hours earlier even if something important was discussed.  If I had a dollar for every time I went into the garage to get something and then stood and stared for long minutes while I tried to recall what it was I was looking for (or even what I had been doing) I would be doing quite well for myself.

So, as I explained this to my doctor, she recommended that I see a colleague of hers who is a specialist in this type of "cognitive disfunction" due to damage to the brain from radiation or other injuries.  He may be able to give me some exercises or Ginko Biloba or something to help restore some of the lost brain cells.  She said his office would call me.

About a week later I received a call from the doctor's office.  I brilliantly said, "I'm sorry, WHO?" with no immediate recollection of the conversation.  She went on to explain that she had received a referral from my oncologist for help with cognitive disfunction.  I said, again demonstrating my great intelligence, "Oh, yeah!  I totally forgot!"  A little giggle from her and then I added, "I suppose you hear that from tons of your patients."  She didn't comment on that, but it must be so.  They almost certainly have more missed appointments than your average doctor.  I can't wait to see how often they remind me of this appointment over the next few days!

So to those of you who tell me things that I immediately forget, and to those to whom I place frantic calls asking where or when someone's game/track meet/etc. is, thank you for bearing with me and helping me along.  And please know that if you tell me something and I don't remember it, it is not because I don't care.  I DO care, I just can't overcome the sagging brain.  Hopefully this new doctor (if I make it to my appointment, of course) can help me!

Clearly, I am in need of his services.

Sunday, February 17, 2013

Happenings

I'm not going to lie to you.  Re-entry from our vacation was...well, a bit of a shock.  However, now that I am settled and things are back to normal (if there is such a thing around here),  I am plowing along, day by day, busy with our usual activities and with some unusual ones as well.  It follows, then, that this will be a rambling post about this and that since so many things are happening in our family these days.



The kids are doing all kinds of things to keep themselves busy.  Joey just got his letterman's jacket and we are so proud of him!  This totally biased mom thinks he looks great, especially when pictured with his beaming dad sporting his own now-ancient jacket. Two generations of football, more to come I hope.  I particularly like Joey's choice for the back of his jacket:  "Saint Michael the Archangel, Defend us in Battle".  He is rarely home as he goes to school at 6:15 for off-season football conditioning and stays until 5:30 for track practice.  He is a sprinter as you may recall and is trying hurdles for the first time--I hear he's good and can't wait for his first meet.




In stark contrast, Lindsey, too, has realized her life's dream, as she finally has the hammock she has been wanting for some time.  Jay and I brought it back from Costa Rica for her in her very favorite color.  She is spending lots of time there reading and listening to music despite the still-wintery weather.  She cantors often for school masses and I love to hear her sweet voice.  She constantly amuses me with her lovable quirkiness.


Sam just returned from his first "Snow Camping" adventure with his Boy Scout troop.  Here he is with all his gear, ready for his two mile hike in fresh powder at midnight.  Not surprisingly, when asked how it was, his reply was, "Cold."  Even so, he had a great time at the Klondike Derby shooting snow cannons (what the heck is a snow cannon anyway?!) and competing with other troops in all sorts of snowy events.  He, unlike Joey, decided to continue on from Cub Scouts to Boy Scouts and is really enjoying all the activities his very busy troop provides for him to do. He is also playing basketball for the first time for Sacred Heart and loves it.  Not being a basketball family, we are not sure where this came from, but we are happy for him!

Julia continues with her gymnastics and is a pleasure to watch.  She will be competing new routines in some upcoming meets and I am looking forward to seeing how she has grown in her sport since the fall.  Bella has begun taking gym classes too and is catching on quickly.  I hope it isn't the end of her cheer career as she is such a great little cheerleader.  However, gymnastics stole Julia from cheer and it may snatch Bella away as well.  Bella will be turning six on Friday.


Toothless, Tiger Scout Tony is VERY BUSY playing Minecraft.  This is a building game and I am absolutely stunned at the complicated and creative worlds he has created.  Of course, I am thinking he is a budding architect and am happy to have at least one career decided upon for my children.  Six more to go...

Natalie is my constant companion and a continual joy.  I am treasuring this last year and a half of having her at home.  I will be lost when she goes to school.  (But maybe I'll get over it somehow.)

As for me, I fell off a ladder last week and banged my head pretty hard on the corner of a table on my way down.  Luckily, I had a brain scan scheduled a few days later anyway, and the bump was on the opposite side of my Omaya, so we were able to see pretty quickly that all was well.  Nonetheless, it hurt quite a bit and slowed me down considerably for a few days.  I will be avoiding ladders from now on.

About that brain scan:  Remarkably, I remain stable.  Still have two metastatic spots, still not growing, shrinking or changing.  Though I would prefer "clear" I am pretty happy with "stable".  Chalk up another two months for me, hurray!  God is good.

Finally, Jay and I are excited to be doing something totally out of the ordinary for us.  We are going to the Costume Designer Guild Awards in Beverly Hills on Tuesday.  My friend from high school, now a successful business owner, runs this show (among many other things) every year and she sent us tickets out of the blue for fun.  I have a gown to wear (great sale at Macy's!) and Jay has his tux all ready to go.  We are like little kids playing dress up...and maybe we'll even see some movie stars!  Fun, fun fun.

This is starting to feel like the Christmas letter I never wrote...so I'll close with that.  Rest assured that, though much time passes between posts at times, that I am well.  Thanks for reading.




Saturday, February 02, 2013

Greetings from Costa Rica!

Costa Rica was not on my list of places to visit. Yet, here we are and I have no idea why it wasn't! This place is beyond amazing. It is lush like Kauai (my favorite place on earth) with a rainbow of bright flowers and birds of every color and size. We are staying in a beautiful hotel with a very close view of the volcano Arenal and geothermal hot springs feeding into little pools all down the hill by our room. Every few hours when it is just starting to feel a little warm, it dumps rain for about five minutes and then the blue sky shines through again. This is truly paradise.

I am finding this country, a republic, to be very well run and efficient. I see the poverty of the tin roofed-cardboard sided clusters of shelters but I also see a refined and welcoming people, busy in their various industries and kind to Americans (not always the case as we are collectively known as obnoxious and entitled travelers in many places I have been). 

We are here, along with roughly 90 others, as guests of one of the founders of Vivisimo, the company for which Jay has worked for five years. Vivisimo was recently sold to IBM and a lot of money was made in the deal. Our benefactor set aside a percent of his earnings and offered this complete 6-day vacation to all of the employees that made the company the gem that attracted IBM. See, chivalry is not dead everywhere!

Today we went on a river tour where we saw howler monkeys, white-faced monkeys, turtles, both the two and the three-toed sloth, and lots of caiman (a variety of gator/crocodile that I had never heard of before today).  We had a delicious "typical lunch" of black beans, rice and chicken with fresh pineapple ripened to the peak of sweetness in a nearby field.  I learned that Costa Rica exports sugar, teakwood, oranges and pineapples, from this side of the country.  Who knows what else we will find when we move to the other side in a few days.

Tomorrow we plan to go to mass in a little church on the town square in La Fortuna and then go zip lining, hurrying back, naturally, to watch the 49ers win the Super Bowl.  I am so happy I am here with my wonderful husband, and I am confident that my kids are being well-cared for by people who love them at home.  There are a few pretty cute kids on this trip and I am flipping between relief that mine are not here and sadness that they aren't. I'm pretty sure the relief is going to win out, though.  At least for awhile, anyway!

Our river boat ride took us very close to the border of Nicaragua and we saw boats of people who commute down the river to work in Costa Rica and return to their homes in Nicaragua.  Our guide told us the unemployment rate in Nicaragua is 50%, far higher than that in Costa Rica.

Here are some pictures Jay took today--ain't technology great?

My initial amazement at our accommodations:

The "Jesus Christ Lizard" named so for its ability to walk on water:

Howler Monkeys swinging through the trees alongside the river:

Bird drying its wings in the sun after a fishing trip:

Rather large iguana:

Caiman regulating his body temperature...unsure why mouth is required to be open during the process:

The view from the sitting area in our room:

We are most certainly lucky ducks.

Tuesday, January 29, 2013

A Question from Natalie

"Why am I last?" mourned Natalie about her position in the family.

"That's the way God planned it," I answered.

"Well, then.  Why can't I be God?" she demanded.

Why not?!  That was a question I had never myself considered.  A question only Natalie could ask.  I tried to give her a good answer, really I did.  But how can I explain in preschool terms the everlasting nature of God, how he created her out of love to be exactly the person she is supposed to be?  At 7am, I just stuttered unintelligently   By the time I had an idea of what I was going to say, she was gone, off to the next thing.

Apparently, we have quite a bit of catechism and apologetics still to get through...for both of us!

Thursday, January 17, 2013

Op Ed: Share Bears

Since I have a blog, I have this great opportunity to express my opinion about anything I want, even something so ridiculous that you will likely stop reading by the second paragraph.  However, as this has been a constant irritation to me for years with no end in sight (although the end is getting closer), I thought I'd subject you all to my opinion on the subject of....drum roll please...shared stuffed animals.

What is this, you ask?  It is a teddy bear or a puppy or anything cute that goes home with your child who is in a preschool class, a daisy troop or other organized group for young children.  It usually comes in a backpack with a binder and a few accessories, and your child brings it home for a weekend or a week or whatever period of time is appropriate for the organization.

As the "lucky" recipient of the coveted backpack, you get to take pictures with your "friend" and put together a collage and commentary on what you did together and how much fun you had sharing this special time together.  You add your page to the binder when you return the friend and the backpack, and then it goes to the next child.

Don't get me wrong, I am not heartless.  I think it is a sweet idea that could unite a group in a fun way. Nor do I have any heebee geebies about sanitary issues and the sharing of germs between houses.  For goodness sake, I have seven children and a big stinky dog, not to mention the cat and the turtles, so I already live in a menagerie of germs, no matter how often we disinfect.  (Tangent...it must be true that the more you let your kids play in the dirt the healthier their immune systems become as my kids are rarely sick, thanks be to God.)

However, as soon as I see one of those backpacks coming home with one of my kids, my stress level goes sky high.  Why?  Because I become responsible for keeping that friend out of the dogs mouth, away from the swimming pool, and away from food of all kinds.  I have to keep track of any accessories that came with it and live in a constant state of terror that we are going to lose or break something.  The kids, completely delighted with their special friend, carry it all over the place and I have to trail behind them like the guy behind the elephants at the circus to be sure we don't spoil it for the other kids.  This is no small task and I am constantly on guard the entire time the friend is visiting.

As a bonus, I get to look at all the nice pages other parents did for their children while I frantically snap some photos the last day we have the friend, sometimes making the child change clothes so it appears that we did it all along instead of all at once at the end.  Then I have to caption these photos in a way that makes the whole visit seem like it was a little taste of heaven.

No, I am not a fan of the share bears.  But, I endure what I must for the delight of my children.  Sigh.

(If you are still reading, I commend you and thank you--it feels great to get that off my chest.)

Friday, January 11, 2013

Making Memories

We have changed the way we are doing things around here lately.

We have a history of buying things to celebrate our kids achievements (i.e. some silly little not-too-expensive thing they have been wanting).  What happens is that they love their little thing for awhile and then it takes its place in the junk pile before a month has passed and off it goes to Goodwill.  We have come to understand that this is not a good way to teach our kids to live the spirit of poverty, nor is it good to feed their natural tendency towards consumerism.  Yet, we still want to celebrate our family when they do something special or particularly good, so what to do?

It was Jay's spiritual director that made it clear for us.  "Make memories," he said.  Rather than buying a new pair of gloves or a giant gummy bear or some magnetic men or a nerf gun, he explained, we should channel those resources instead into making memories that will last a lifetime for the whole family.  This is especially true given my precarious and unpredictable health situation.  In theory, this should bring our family closer together and help us detach from "stuff" and learn rather to appreciate each other for who we are and truly celebrate together the accomplishments of the individuals.

We have been doing this for awhile now, and so far we are quite happy with the results.  It is not perfect (we still sometimes give in on the "stuff" but less than we used to), but the truth is that we can really see better relationships developing between our children.

We rarely go out to eat at real restaurants and we hardly ever go as a family to a movie.  The boys love to snowboard but rarely go.  The girls are always asking to go ice skating but we don't.  When there are so many children, any normal outing such as the zoo costs a fortune and it has always seemed more economical to celebrate the individual with something small than doing anything with the entire family.  We are learning, however, that economy is not always the most important thing (though it certainly not cannot be ignored).  But when you stop buying a lot of little things, you find you have more to work with!

As a result, in recent months, we have made a point to do more and worry less.  One day we had lunch and went underground bowling at Bex after church.  I played pool with the boys and had so much fun!  Over break we took the boys snowboarding at Squaw Valley (they had never seen any ski resort bigger than Mountain High) and the girls (and Tony) finally went ice skating.  We saw a couple of movies (Wreck it Ralph and Les Miserables) and we have been out to several meals.  Not ordering drinks makes it much more affordable for us (and healthier too as the kids want soda).

Even our Christmas present strategy changed this year.  Santa brought one present for the whole family (a Wii u) and each kid got a game to share with the family.  This has brought our kids out of their bedrooms and back into the family room as we had hoped.  One of the games is Jeopardy and we have so much fun playing together.  Another is Just Dance 4, something we can all play and enjoy that has exercise benefits as well.

As the kids are getting older (we only have three years left with Joey!) we are wanting more together time.  They are naturally separating due to their ages but we are doing our best to bring them back together.  Thanks to Jay's frequent travel, he has a lot (and I mean really a lot) of air miles and hotel ponts.  We use those only for the family, for trips together to places most families of nine cannot go.  This is our reward for all the time Jay spends away from us working.  Like most people, finances are tight for us but we are learning that when God sends a little extra our way, we are supposed to use some of it for making memories.

Making memories doesn't always have to cost money.  Sometimes a family dog walk in the desert can be more valuable than anything.  Family prayer as many nights as we can keeps us in tune with one another and with God, and we are working on finding a larger dining table that does not double as a homework table so we can eat dinner together at a table most nights (football season exempted since the boys and cheerleaders get home at crazy hours).  It is in these things that we are connecting, in these things that we are gluing tight our family bonds.

I pray they stick forever and ever.


Thursday, January 03, 2013

Eeeeooowwww!

As you know, I can take a decent amount in the pain and suffering department.  What happened to me at the dentist today, however, was off the charts.  I cried like a little baby.

For several months now, I have had what I thought at first was a very long lasting mouth sore.  Except it wasn't sore.  It was kind of like a hole with hard edges.  Naturally, after awhile I started thinking about mouth cancer.  I made my regular cleaning appointment a little sooner than usual to have it checked out.

To my surprise, the hygienist,  after scraping around it with that fun pointy tool of hers, declared it to be a bone.  I had grown a bone spur on the upper inner quadrant above my last molar that actually poked a hole through my gum.  What?!  Who does this sort of thing happen to?!  I've never even heard of such a thing.  But leave it to me to be groundbreaking in a wide variety of medical fields.

Just at that time we were changing our dental plan to a better one that actually covers these sorts of things, so I decided to wait at least until our new insurance kicked in to see if it was going to go away.  It was my plan that it would go away on its own and I wouldn't have to deal with it ever.  Good plan, right?

While on our mini vacation this past week, I came down with a throbbing toothache right between two crowns in my upper left quadrant.  I had by then become so accustomed to my own decision not to deal with the bone spur (and plus, I could no longer feel the bone so I was convinced it was on the mend) that it didn't even occur to me that it might be related.  Sadly, I resigned myself to one or possibly two root canals, two new crowns or even (gasp!) a bridge, cursing the family teeth the whole way.  As it turned out, any of those things might have been more pleasant than what actually happened.

When I arrived at the dentist this afternoon I told him where I hurt and pointed out the original "mouth sore" to show him how the bone was no longer showing through.  After painfully prodding the entire area he informed me that it wasn't closed up, just swollen over.  Uh oh.

I had developed an infected abscess behind my back molar that was radiating pain through the entire quadrant.  Gum surgery, he announced, was in order right away.  He happened to have an opening in his normally packed schedule, so he said enthusiastically, "Wanna do it now?"  Oh, boy.  No notice.  No time to search for information/read horror stories on the internet.  Just like that?

I weighed my options for about 30 seconds.  I like and trust my dentist.  I am sure he was not suggesting something I did not need.  If I left, it would only get worse and I'd have to do it anyway.  The kids are still out of school, there's not too much going on the rest of this week, our new and improved dental insurance is in place, Jay is home, so I couldn't really find a reason not to.  "OK," I agreed.

"It won't be too bad," he cheerfully mentioned as he began gathering his tools.  I looked immediately at his assistant who looked guilty and said, when questioned by my terrified eyes, "It is going to be tender for awhile after, but you won't feel the actual procedure."

She was right on both counts.  He jammed so much Novocain into my upper left jaw that I thought I would never feel anything again.  Six, seven or who knows how many shots later, even my throat was turning numb from the run off and I felt as if I couldn't swallow.  My heart started racing (as it usually does when I receive Novocain but I had forgotten that detail), my body started shaking uncontrollably and I had a genuine panic attack.  I made them sit me up so I could breath through it.  Both the dentist and his assistant waited it out patiently as apparently this is a fairly common reaction to large amounts of Novocain.  Sure enough it passed in less than a minute and they talked me through it gently, but it really rattled my cage.  Far worse was this than the head stabilizing cage of the brain cancer patient in terms of claustrophobia.

What came next I could not feel, but could hear and imagine.  It began with his assistant asking which tools he would be needing, and his answer was, "All of them."  Really?

From what I could gather, he cut my gum in a horseshoe shape around both sides and behind the three last molars on the top left.  You know, right where my gag reflex is.  He is very lucky I did not throw up on him because I wretched pretty severely half a dozen times or so during the procedure   Good thing I didn't have lunch before I went.

He peeled back what he referred to as "the flaps" and got busy shaving and grinding the bumps off my bones on both sides (prophylactic as I had many such small spurs) and thinning the surrounding tissue (why, I don't exactly know).

When the assistant was suctioning the area near the original hole, her vacuum got clogged by a piece of bone that had come off my jaw and was just hanging out in the gum.  I was so fascinated by this that I made her give me the bone piece in a zip lock bag (yes, she thought it was weird, but who cares?).  This was not a bone he shaved, it was already off when he opened me up.  No wonder it hurt so much.

Next, he cleaned out the infection (I won't disgust you with the details) and then sewed me up.  Stitch after stich after stich, the dangling thread ticking my nose and face as it dragged along.  Finally, he packed me with a silly putty type substance to hold the stitches together, cleaned the blood off my face and told me he'd see me in a week.  I didn't feel anything except pressure during the whole procedure.  Even his initial shots were painless as he is particularly good about jiggling and pushing the Novocaine slowly so you don't feel it.  My kids go to him too and not one has ever realized that he has ever given them a shot of any kind.  It is a total bonus to truly like your dentist, the tour guide of such painful and scary adventures.

Normally when I get a cavity filled I wait for hours and hours for the Novocaine to wear off so I can eat normally without biting a hole in my cheek.  It drags on and on.  Of course that was not the case this time.  By the time I was a few blocks from home I was wondering what the heck happened to the numbness as I could feel everything as if I'd never had any medication at all.

The word "pain" does not describe it adequately.  The only time I can ever remember hurting more (and remember, folks, that I have birthed seven babies under a variety of conditions) was when I suffered a severe wrist fracture from the air bag that opened to save my life when we were in a car accident in 2006.  It took a pharmacy (and thank goodness I happen to have one--cancer bonus!), a creative and experienced pharmacist (me), and nearly four hours to get my pain under control.  Now I am in maintenance mode and feeling like a human being again, but boy what a ride.

Most of you probably stopped reading this long ago out of disgust or sheer boredom, but for those of you still with me, thanks for sticking it out.  It was such a refreshing break from cancer blather that I really couldn't help chronicling every detail.  I feel oddly happy to have some other kind of news to share.

My dentist's post-surgical instructions remind me that the worst pain will likely peak 36 hours after the procedure. So don't call me on Saturday as I probably won't be in a very good mood.

Happy New Year!  And thank the good Lord for decent dental benefits (if there is such a thing).  We changed our plan in the nick of time, which I know was no accident.

Oh, and by the way, after a careful review of the situation, I can now see that I don't REALLY think a root canal and new crowns would be preferable to this.  After all, this is over now...I hope!  That whole root canal and crown thing goes on for weeks.  I guess in retrospect I can admit that this was the better source of the pain.  See, writing this blog is better than counseling for me!