A MasterCard Moment

Here is a picture of  the former paint and color scheme of Natalie and Bella's bedroom (which used to be Tony and Sam's).   They did not like it (obviously), so the state of affairs became such that they both have been sleeping  in our room every night.  The floor of our room has been constantly littered with small bodies and all the bedding and dolls and stuffed animals that come with them.   Something had to be done...

2 Gallons of Primer and a Gallon of "Sweet Baby Girl" Pink Paint:    $75.00
Walmart's Finest Hello Kitty Bedding for two, plus Curtains:     $120.00

Two little girls blissfully asleep in their own beds for the very first time:  Priceless!

Year of Faith

Any Catholic who has been to church recently (and I'm most certain that is all of you!) has heard about the Year of Faith that was declared by Pope Benedict XVI on October 11.  This year is an opportunity for Catholics to participate in a New Evangelization of our faith and, really, to get to know our very rich faith anew.  It is a time to "rediscover" Christ and to be inspired to share our faith with others.

In this spirit, I thought I'd share a few links that you might find interesting as I encourage you to really try to live, along with me, this year of Faith.  First is the the Official Site of the Year of Faith.  This site has it all...a summary of what the Year of Faith is, answers to frequently asked questions, the official Pontifical Declaration and suggestions for activities you can do as an individual or as a parish to make the most of this year.

One of the things we can do this year is to simply read the Catechism.  It contains everything there is to know about our faith and why we do what we do.  Follow this link to subscribe to an email that will send you a small portion of the Catechism to read each day.  If you are faithful to this you will have read the entire Catechism in a year.  Even if you are not Catholic and are interested in learning more about the Catholic faith in a low-pressure way, this is a great way to do that.

Finally, I highly recommend attending some method of faith formation during this year.  For me, this means continuing my formation and spiritual direction with Opus Dei.  There are Opus Dei centers all over the world and all (most) host monthly Evenings of Recollections that offer this formation.  Visit Opus Dei's Website or email me directly if you need help finding a center near you.

Most parishes will be having extra speakers and multiple evening series on different aspects of the faith.  If you can spare the time, go to them.  Especially go if you CAN'T spare the time!

It is easy for us all, who are so busy, to mostly ignore something so esoteric as a "Year of Faith", but if you take a few minutes to think about it and read about it, it could very well be the best year of your life!

At Least He Has A Career Goal

Sam, out of the blue tonight when he was working on his homework and I ridiculously assumed that his mind was on his work:  "How hot is an iron?"

Me:  "Really, really hot.  If you brush your arm against it your skin will blister."

Sam: "When I'm an evil overlord, that is going to be my torture weapon of choice."

So, my son may not have his mind on his homework, but instead he is busily attending to the details of his future career goal at the tender age of 11...what could make a mother prouder?

For All Who Are Wondering...

My targeted brain radiation went well today (who could imagine writing such a ridiculous sentence?!).

Nevertheless, I am happy to report that I am feeling more or less normal (though exceptionally tired) and was able to conduct my activities fairly normally today.  I expect, if whole brain radiation is any indication, that I will dip worse in the fatigue department before feeling better again, so I am prepared for that. But who knows, maybe I'll get lucky!

The doctor was pleased with how it went, and now we wait. And wait. And wait.  We wait 2 or 3 months until I have a brain MRI to see if it worked.  He gives it an 80-90% chance of success.  I think he does not account for prayer in that statistic.

Lying perfectly still on a very hard table with a Jason-like mask smashing my face into place and a bite plate screwed into the face mask was not what I would call pleasant, but luckily I am not claustrophobic, and I was able to control my gag reflex by breathing through my nose and praying during the entire procedure.  I was bound like that for about 30 minutes.  When they finally released me from the screws I had a mask pattern ground into my facial skin that lasted an hour or so and exaggerated mouth sores where the bite plate dug into my gums, but since I have never felt so happy as when I was finally able to scratch my nose and eye that had been itching all during the procedure, I hardly noticed or cared.

I am ever grateful for this day and each day I glean from what I did today, grateful for my family, grateful for modern medicine, grateful for friends and grateful for blog readers who become virtual friends!

But I'm no foolish Pollyanna.  I don't want cancer, I don't want any more brain radiation, and I want this all to stop.  Enough now!  Please?!

The "Keeping You Posted" Post

I saw my new doctor today and liked him very much.  He has a very different manner than my last radiation oncologist, a bit lighter and not so serious, which I personally prefer.  Plus, he had good coffee in his office.

Although, truth be told, I wouldn't much care if the doctor had the personality of a bed post as long as he or she really, really knows their stuff, but I really don't appreciate arrogant doctors and am delighted to have an excellent, positive energetic doctor who has nary a trace of that "I'm a brain surgeon" swagger.

Anyway, he took lots of time with us in an office rather than an exam room (another touch I appreciate) to explain our options.  He showed us the 3D image of the tumor and where exactly it is sitting.  It is deep inside the brain and as so is inoperable.  So it basically boiled down to two choices:  zap it now or watch and see what it does.  Everyone is so miffed by that last disappearing tumor back in March that there is almost a "let's wait and see" feel.  However, it is growing so quickly (actually already 1.3 cm by his measurements in 3D, not just across one plain that showed the 7mm) that he suggested we get it before it gets any bigger.  This has grown in under three months, since my last brain MRI in June showed no trace of it.  My last doctor would not treat over a centimeter, but this doctor is willing to.

The concern with treating a larger tumor, I learned today, is that while they can be very precise with the intense radiation dose and where it goes, there is a halo of much less intense radiation that will circle the tumor, often leading over time to brain tissue necrosis in the area.  The bigger the original tumor, the greater the halo and the more damage done to the brain.  They are finding, as people with brain mets are living longer and longer, that this incidence is much higher than they had originally thought.  But I still prefer to have more years with my kids than perfectly preserved brain tissue.  They'll still love me if I'm a dummy.  (At least they'd better!)

Today right after our get acquainted appointment, the office staff made my mask (you remember, the one that bolts you to the table and makes an excellent Halloween souvenir at the end) and something new to me...a bite plate that screws my jaw down with my mask so I can't move even the teeniest fraction of a millimeter.  Warning:  if you are claustrophobic or have a serious gag reflex, don't get cancer in your brain!  I was fighting my own mild gag reflex all day.  Breath through the nose, breath through the nose, don't let your tongue touch the intruder in your mouth. etc., etc.

So, net net, I am all set for a single mega dose of radiation on Tuesday.  No decadron (yippee, yahoo!), a thirty minute procedure, and then we wait months to see what it does.  My doctor believes I have a 80-90% chance of a complete response.  I am praying for better odds than that, but I'll take what I can get.

There you have it, up to the minute.  It's in God's hands now...always has been.

Here We Go Again

Results from yesterday's brain MRI were not what I had hoped they would be...but they were not as bad as they could have been either.

I have a new tumor on my brain measuring 7mm.   It is located on the margin of the left lateral ventricular and appears to be a regrowth of one of the original lesions.

No, this is not good news.  And, no, I am not totally surprised, as I knew, statistically, that this was eventually a virtual certainty, and that I have been very fortunate to go a year with no regrowth.  Nonetheless, I was becoming pretty convinced by clear scan after clear scan that I was going to be Don Alvaro's miracle, a dream I am not planning on giving up no matter what the medical evidence says.

And it could have been much worse.  If I had a lesion measuring more than a centimeter, or if I had more than six lesions, according to my previous radiation oncologist I would not be treatable, so I am actually counting my blessings that this is at least something we can attack.

I am seeing a new doctor tomorrow, a brain-specific radiation oncologist, and we will decide what to do about this pesky growth. I have no idea what is coming down the road for me in terms of treatment.  Could be gamma knife radiation, could be chemo, could be craniotomy, I really have no idea.  I pray that whatever it is will not be too awful and that I don't lose any more cognitive function, since I have far less to spare in that area than I used to!

Is it impossibly vain to add that I hope I can keep at least most of the bush residing on my head that I have so labored to grow in desert conditions?  Gray and frizzy as it is, it is mine and I am fairly inclined to keep it.

So, I will keep you posted (Get it?  Posted?  Ha ha!) after I see my new doc tomorrow.

Keep praying and know that, truly, though I am acutely sad for my family to have to experience more of this, I am at peace and always, always trust that God unfailingly gives us what we need.

(Whether we want it or not!)

So Much for All That Extra Time

Didn't I say that having help with the house would give me more time to blog?  Hmmm...  It's not really worked out like that so far.

I am so happy to have help with the never-ending laundry and ceaseless feeding of the kids that I have been busier than ever!  I have been helping the kids with their homework every night, quizzing them on vocab and for tests and, for the first time in years, really understanding what they are doing in school and sports.  I actually took Natalie to the library and have been reading to her.  I can't remember the last time I did that with one of my kids (for awhile now, I have been having the older kids read to the younger ones, truly a shame in retrospect).

I am getting ready to paint the little girls' room and have been busy attacking piles of accumulated junk around the house.  I have updated girl scout vests, spent time playing the Dora matching game, Scrabble, Club Penguin and Racko to my kids' delight.  I have taken them to the scooter store, out for ice cream and shopping when they need something specific.  I have read the books my older kids are reading so I can discuss with them and help them as needed with related assignments.  For someone who has spent much of the last year asleep and every waking moment fulfilling the basic needs of the family rather than enjoying the family, I feel as if I have a new lease on life.  There is so much to do, especially with the kids, who I almost missed grow up in my stupor.

I would be a fool if I weren't taking advantage of this extra time to sleep as needed, but I'm no fool!  I am not the same physically since my brain radiation and get terribly fatigued each afternoon.  Being able to give into that and nap, knowing that the house, dinner and the kids are being cared for is such a blessing in this regard.  When I wake up I am ready for the evening shift, altogether more cheerful than I was when I was trying to "do it all" and failing miserably.  I am most definitely counting my blessings and thank God for the resources he has provided us to be able to get me the help I need.

I have a brain scan tomorrow--nothing suspicious, just my regular three month check for malicious activity.  I am praying harder than ever that it is clear, because I am most definitely not done with my work--the only work that truly matters in the end.

Always a Student

I have learned several things this month that I thought I would share with you.  In no particular order...

First, I learned that there is such a thing as "right" and "left" socks.  Imagine my surprise when Joey, who has always been particular about his socks (I remember hours of preschool torture when his sock seam wasn't lined up properly), rejected his folded and paired socks because I put two right and two left socks together.  Seriously?!

My first reaction was, "You're kidding, right?"  Socks don't have rights and lefts, they are simply socks!  Plus, it is hard enough to keep socks for 9 people straight without adding THAT particular complication!  He looked at me like I was the dumbest person on earth (he is fourteen, you know) and set me straight immediately with an exaggerated show of pointing out the microscopic R and L printed on the toe.  I hung my head in horror when I realized that not only had I given in to buying this ridiculously overpriced brand of sock because my budding football star's feet were uncomfortable in "regular" socks, but that I had created a right and left nightmare for myself in the process.  What a dummy I am.

The second thing I learned is that school assignments are no longer turned in on actual paper.  Joey's first real high school assignment is due tomorrow, and I only just learned that it has to be submitted online through a plagiarizing-detecting website.  What?!  Back in the olden days when I was in high school, I didn't even type papers.  There was no internet to cheat off of.  There was certainly no way to check that it wasn't someone else's work.  I have now been educated that there is a whole new world of cheating now, thanks to the world wide web, and these are the lengths to which we must go to keep our kids honest.  Who'da thunk it?

The last and likely most important thing I learned this month is that I need help.  Real, extended help.  You have no idea how difficult it is for me to admit this, especially since I feel I am getting stronger every month.  Nonetheless, my amazing and ever supportive family, extended family, and friends, who have gone to great lengths to help me every day with all sorts of things ranging from rides to meal prep to laundry and endless childcare, have at last convinced me that my situation is unsustainable.  Even with my army of helpers, I fall further and further behind in my household chores and in caring for my family.  As I am finally realizing that it is statistically (not divinely) unlikely that I will ever be much stronger than I am now, I have accepted his reluctantly.

So, beginning Wednesday, I will have that help.  Through a wonderful and trusted reference, I will have someone here with me Monday through Thursday in the afternoons, when I am most tired, to help me with laundry, cooking, grocery shopping and child deliveries as needed.  This will take some burden off of those who help me so much (and aren't getting any younger, as one of my parents put it) and it will allow me to spend more time with my kids, which is what I really want to do.  I can help them with their homework, hopefully be more cheerful instead of snappy and tired, and be generally less stressed and upset about all the things I can't do.  I can say yes when my kids ask me to play board games with them or read to them because I won't be falling asleep on my feet at 7pm.  And guess what?!  I should have more energy to blog.  Let's hope!

I'm Still Kickin'

Hi all!

I don't actually know if I have any readers left since this blog has basically been abandoned for the last month.  I have only the excuse that I have been busy nearly every minute getting the kids ready for school (uniform inventory and school supplies are monumental projects when you have seven kids, let me tell you), and the football season is going strong.  This year we have Joey playing for Paraclete and Sam and Tony playing for the West Valley Rebels.  Lindsey and Bella are cheering again and Julia is in her first year of competition gymnastics, which is a whole new level of commitment.  Throw in two Girl Scout troops, endless doctor, dentist and orthodontic appointments and the addition of homework this week, and it would be too much for a small army to handle, let alone for someone not functioning at full capacity. I am tired just reading this over!

Jay has been traveling a lot as well, and while I am not really complaining since I am simply thrilled that he has a job he loves that can support us all, it is definitely hard to get it all done.  Needless to say, I never do, even with all the help that grandparents and friends give me.

When I noticed recently that I was getting more "are you OK?" emails than junk mail, I realized I had better let you all know that I am fine, simply constantly at or above capacity.

No news on the cancer front (and believe me when I say no news is good news).  I have my next set of scans in late September so there will be nothing to report until then.  I generally feel fairly well as long as I pay attention to the signs my body gives me and don't overdo it.  I have a rough week every time I get an Xgeva injection (flu-ish) and am often quite fatigued in the afternoons.  Lately I have been fighting a variety of minor yet unpleasant infections that, due to my suppressed immune system, never seem to end.  But all this is small potatoes given that the cancer is under control.  These are the side effects of what I must do to stay alive and I am more than willing to endure them, as much as I would like them to go away.

Since I last posted, Tony turned 7, Sam turned 11, Bella started Kindergarten, Lindsey began her job as Treasurer for the Student Council, we had a visit from our dear friends from Northern California and we ate fresh corn from our garden for the first time in a few years (yum!).  The kids have been swimming nearly every day of the summer, often with many friends, and I have been busy trying to keep them all fed!  I am still singing, which is a great joy for me, and I am looking forward to having a few regularly scheduled hours a week to myself as Natalie begins preschool in a few weeks.  I am also happy to have Natalie home with me a few mornings since all too soon she will be in Kindergarten herself and then what will I do?  I can't imagine.

Thank to all of you who keep checking this blog faithfully to see how I am doing.  I am sorry I have become such a sporadic poster.  As always, I hope to do better in the future.

Amazing Grace

I am on an airplane on my way home from a six day workshop in Theology at the beautiful Arnold Hall in Pembroke, MA.  What a privilege it was to be there.

The 25 women I spent this week with were nothing less than inspirational.  Young and old, from several countries, married and not, professionals and homemakers, both mostly mothers to families of all sizes, these women taught me as much as the dozen or so classes I took on theology.  There are a lot of really good people in this world, doing amazing things in the interest of our nation and our society.  They challenged me to think about what I could be doing better in many areas of my life, though many claimed that it was actually I who was inspiring them through the story I am living out right now.  Imagine that.

We had an excellent priest, Father Bob Connor, give our classes.  He is without a doubt the best-read person I have ever met.  In order to understand theology and philosophy at the level at which he does, he has not only consumed every important work written on the subject since 600BC, but he can quote page numbers and actual paragraphs of the most pivotal ones.  He was a pleasure to listen to, easy to follow through a very complicated subject, and seriously enhanced my view of what being Christian is all about.

It was a lovely vacation for me, with delicious and beautiful meals showing up regularly, only my own minimal laundry to be done, and lots of time to read and think and pray.  With no internet access (other than spotty 3G), I found many different ways to spend my free time, but mostly chose to get to know the ladies that were there.  It was time well spent.  (Although I really missed my family and can't wait to plaster them with kisses upon arrival!)

No matter what your faith, I challenge you to get to know it better in theory and practice, which should be one and the same.  We can't truly understand our faith properly if we are not formed by others before us, which is why things like classes, reading and spiritual direction are so important.  Our Catholic faith is 2000 years old and full of richness--the faith of the Jewish people even older.  There is so much there for us to learn and understand, and yet you don't have to be a theologian to be a great Catholic.  That is the beauty of faith.

Bishop Don Alvaro Named Venerable

To those of you who have suffered through all of my cancer-related posts over the past two and half years, you know that since the very first day I have been asking for Bishop Don Alvaro's intercession in my healing.  

For those of you not Catholic, you may be wondering what this means.  Catholics believe that there are many people already in heaven and that they form the communion of saints.  Since these souls are physically very close to God himself, it makes sense that we would ask them to intercede for us with him.  Of course, God hears us just fine if we approach him directly in prayer, but to have a saint already there asking him for what we need on our behalf can't hurt.  It is just like asking our living friends to pray for us, except these saints have an even more direct line.  We never, ever worship these saints, we just ask for their assistance from time to time and try to live as they did since we all want to become saints ourselves.

The very first day I learned of my Stage IV diagnosis I was at UCLA alone (it was the first day that week Jay did not accompany me because I insisted he stay and work since he hadn't all week).  I had never considered it as a possibility and was totally shocked.  Not knowing what else to do, I walked the short distance to Westfield Residence, a student residence under the care of Opus Dei.  I knew there would be a tabernacle in the beautiful chapel there and it was all I could think to do. 

The residents graciously let me in to pray.  I sat in the oratory in front of the tabernacle and cried and prayed for about an hour before a numerary named Ann came in and silently handed me a prayer card for Bishop Don Alvaro del Portillo, who was St. Josemaria Escriva's (the founder of Opus Dei) right hand man and successor as the Father and Prelate of Opus Dei after St. Josemaria's death.  I had heard of him but knew little about him.  I looked at the prayer card for awhile, considered it must be a delivery from God somehow, and have recited the prayer for Don Alvaro's intercession most every day of my illness.  He needs miracles to become a saint and I need a miracle to stay alive to see my kids grow up, so it seemed to be a good match to me.

I learned a few days ago that Pope Benedict named Don Alvaro "Venerable".   This is amazing news!  There are four stages to becoming a saint.  First comes "Servent of God, then "Venerable", then "Blessed" and finally "Saint".  This step takes him halfway to canonization. I seriously hope to be part of the miracles needed to push him along this path.

For those of you who are interested in learning more about him, visit opusdei.org and click on canonization causes.  Also, below I am including another link (I know I have placed this in my blog before, but it's been awhile) to the very same prayer card I recite daily.

Don Alvaro Prayer Card

I know many of you have been praying for his intercession along with me, so thank you--I do believe he is listening.  

Update on Our Miracle

I say "our miracle" very specifically because it belongs to us all.  To all who have helped me through these past two and a half years, all who have prayed for me incessantly and continue to do so even now, and most especially to my family who still have a mother against all odds.  God is so good.

I got my latest PET/CT scan results back yesterday and there was plenty of good news there.  All major organs clear, brain clear, no sign of original tumor.  Nothing life threatening at all.  The only small fly in the ointment is continued and intense activity in the left lateral rib and T9 vertebrae (which could be indicative of healing as I am taking a new bone strengthening cancer drug called Xgeva) and one new spot on my right femur.  My oncologist was pleased with the report and so am I.  The bones may hurt, but they won't kill me.  As long as it stays put things are looking good.

I continue to contend with various and ever-present side effects from the many medications I am on, but I can live (and pretty well, too) with these things.

Jay's friend, a neurologist, commented recently to him that in his entire career he has never seen anyone bounce back from brain mets like I have.  That was wonderful to hear.

Thanks to all of you who are very much on this journey with me daily.

Lazy Blogger Alert--Vacation Mode

It's been awhile, now hasn't it?!  Sorry--I know some of you worry when you don't hear anything from me for awhile, but I can assure you that I have been mostly fine, just busy.

Our family took a vacation the first week of June to Fort Lauderdale, Florida.  I would love to share some of the fantastic photos I took but, alas, in the middle of a fish feeding frenzy (literally, see photo below taken with iPhone) our camera was accidentally kicked off the dock and into the water.  Although a very nice man with a long net helped us fish it out, we have so far not been able to get any photos off of the card.  But we haven't given up yet.  Not only did the camera have our vacation photos but also Joey's graduation, so I am truly mourning the loss.  I am very grateful for the few photos I took with my iPhone.

Aside from that loss (and a bit of child bickering), the vacation was lovely.  We went to an alligator swamp and rode on air boats (remember Flipper?!), went on a silly duck tour (a land/water tour of Fort Lauderdale that we all really enjoyed) and rented a boat two different days on Islamorada in the Keys.  That was our favorite place which is why we went back even though it was a bit of a drive.  The kids swam right off the back of the boat in the warm Gulf water.

Here are the kids in front of the duck tour:

This was my favorite beach, on Key Biscane.  The kids didn't like it because it was too windy that day to skimboard, but it was my idea of paradise.  Notice that major storm coming in...it was kind enough to  wait until we were back in the car before unleashing.

Poor Lindsey broke her arm right before we left, but with the wonder of waterproof cast linings and a cast cover she was able to swim pretty much normally.  The cast came off yesterday with a treasure of Florida sand inside.  No wonder it itched her so much!  Here she is the day she got it (No, that is not a beer, it is a Mountain Dew):

After years of no casts, we have now been gifted with two in two months.  May the trend end!  

Finally, here is a photo of Linz on the 19th floor balcony of our hotel.  It was nice having a pretty amazing beach right across the street.

Jay travels a lot, but the good side of it is that every two years or so he saves up enough Marriott points and air miles to get us all somewhere fun for free.  Our only expense for this 8 night vacation was our rental car and food.  Can't beat that!  Especially since we had a full kitchen and laundry in our room.

So bear with me as I rejoin life in the real world.  It was definitely difficult to come back, though nice to be home at the same time.

Little Miss I Can Do It

It's official:  all the kids can swim now.  What a relief!  Clearly, they still need to be watched while in the pool, but the years of having a baby or toddler on the loose who would immediately sink if dropped in are officially behind me.  Yippee!

Enjoy this video of Natalie's newly minted swimming skills, along with the running "me too" commentary from big brother and sister Tony and Bella, along with some comments from mom along the way.

Busy, Busy Month of May

May is always a busy month.  We have two birthdays in our family, someone is always graduating from somewhere, Mother's Day is in there and school is wrapping up (unless you happen to attend one of the Catholic schools that have gone to 200 days this year in which case you have another month to go).  It seems unfair that one month of the year should have so much good stuff, doesn't it?  It's certainly a challenge to those of us who have to run around like crazy people to get to it all!

Nonetheless, as crazy as it may be, there have been so many amazing blessings jam packed into this one little month that I thought I'd devote this post to them all.  This way you don't have to suffer through a dozen separate ones!

The first weekend brought our goddaughter Lucy's First Holy Communion.  It was a joy to see her receive the Eucharist for the first time, and nearly as great a joy for me to see Sam holding her baby sister Georgia.  Can you say, "Awwwwww?"

The next weekend was Julia's birthday, which fell on Mother's Day this year.  Julia turned 9 and I can hardly believe she is half way to being an adult already.

This weekend I am in San Antonio for Jennifer's daughter Hannah's high school graduation.  I have known her literally since the hour she was born and am wondering what happened, when exactly she grew up.  She is going to Truman State in Missouri in August.

Other miscellaneous items included Joey being promoted for the second time in the Civil Air Patrol (here he is in the BDUs) and having his second opportunity to fly a plane.  Tomorrow he will turn 14 years old.  Again, how did this happen?

Finally, I could not resist adding this photo of Tony who went to his Western-themed playday dressed as a Three Amigo.

Only in our family would the six year old even know who a Three Amigo is.  He must certainly be the only one ever with a cast (he has since had it removed).

Lindsey competed in her first Mathletes competition and was very happy to have made the team.  Bella will be graduating from preschool at the end of the month and Natalie...well, she is busy figuring out how to take over the world.

The month is only a few days past half over and we still have Joey's birthday tomorrow (as I already mentioned) and his 8th grade graduation on May 30.  A truly crazy month.

How happy I am to simply be participating in the normal events of our lives, no matter how tired I am at the end of each day.  Simple blessings are everywhere.

A Bella Belly Laugh

Bella is always asking me for gum and I am always saying no.  I don't like gum chewed in my house because somehow it always ends up on my carpet, stuck to a wall, or going through my laundry, no matter how many times I pre-admonish the child I allow to have the gum.  I am not a fan.

Nonetheless, I am only human and after days and days of asking to have a piece of gum that a friend gave her, I reluctantly gave in and allowed Bella to chew the gum.  I gave her a long list of rules about taking it out of her mouth, disposing of it properly, bubble blowing, etc.  She happily agreed to all conditions and acknowledged my threat that if that gum went anywhere other than the trash can she wouldn't get gum again for a very, very long time.

Off she skipped, delighted with her situation, chomping away.  I felt pretty good about the decision, thinking she is getting older and more responsible and perhaps it would work out this time.

Sure it would.

Not 10 minutes later I hear a minor crash downstairs and Bella comes running up the stairs sobbing her heart out and rubbing her head.  My poor, clumsy child had tripped over something and fallen on the tile; upon impact, the gum flew out of her mouth and landed who knows where. She was absolutely hysterical, thinking she would never chew gum again as long as she lived.  Poor thing, and she was trying so hard to be responsible with it.

As she was gasping for breath and shaking her head in disbelief at this turn of events, Jay told her to turn around.  She stopped crying for a second and asked why.  He told her to just do it.  Darned if that gum wasn't stuck to the back of her hair.  He pulled it out with only a minor loss of hair

I can't remember when I laughed that hard, full from the belly, tears and all.  She looked so miffed as to how this could possibly happen.  Her reaction to my laughter made me laugh even harder:  "It's not funny!"  When I assured her it was at least a little funny, she sobbed, "I don't like when it's funny!"  Finally, she capped it off with, "It's zero funny!"

Between snorts of laughter I told her that since she didn't actually lose her gum, she would not be penalized, and her relief was palpable.

Her immediate next question was, of course... "Can I rinse this off and keep chewing it?"

Side Effect Smorgasbord

Quite unfortunately, I have not been feeling as well as I think I should be.  (Don't I have a lot of nerve suggesting that I, a Stage IV cancer patient, has any claim on feeling well at all!!)  This has been going on for several months now.  I am in a pattern of feeling great for a few days or more followed by a few days or more of being exhausted, sleeping more than usual, and feeling more nauseous than usual.  I have been miffed by this since I was on such an amazing trajectory of healing after the horrors of last fall.  This "getting better" lasted for at least a few months so I definitely resisted the new pattern when it made itself apparent.

Sometimes I ask Jay, "What do you think is going on?"  and he always answers, "Maybe it's the cancer."  It's a joke actually, because I have very little in the way of cancer going on in my body right now (thanks be to God!).  There is nothing in my liver, brain, breast, lung, kidneys or abdomen, so why should I be so fatigued and nauseous?  It makes no sense.

Until you consider all the medications I must take to remain in this happy, cancer-mostly-dormant state. I am on three cancer drugs:  Herceptin is systemic every three weeks, in the Omaya Reservoir every six weeks.  I usually have a dip in how I'm feeling about three days after systemic treatment.  I take Tykerb daily, to fight the cancer that is trying to make a home in my brain.  That has lots of side effects that have happily lessened over time for me.  Yet I have to be very careful about what I eat because some things can cause the medicine to dose stronger than it should, resulting in the kind of toxicity that landed me in the hospital the first time.  Finally, I just began taking a new drug for my bone mets called Xgeva.  This should, over time, help dissuade the cancer from rooting in my poor skeleton and hopefully promote healing in the already-damaged areas that are painful for me.  My first dose of this was Tuesday and I have had a hard time staying awake all week.  The primary side effects of this one?  Of course, fatigue and nausea.  I will receive this every six weeks.

In addition, I take a blood thinner injection twice a day to deal with my blood clots and another drug called Megace to help stop the bleeding from my recent surgery.  I should get off of that one soon, I hope, though I don't think that one is a big contributor to my general malaise when it is present.  Next, I have what I'll call my comfort medications, ones I take as needed for pain or nausea just so I can function some days.  Finally, I receive a decent amount of IV contrasts and nuclear tracers for scans, along with anesthesia for surgical procedures or biopsies, which never make a person feel very healthy.  Altogether, that's a lot of medicine!

So anyway, I write this not to complain in any way, but rather to help myself come to the understanding that not only is it not unusual for me to not be feeling 100% all the time, but it would be pretty remarkable if I did.  I have become so comfortable with having cancer that I sometimes forget what a serious disease it is and what serious drugs I am on to control it.  How could anyone feel normal with that many chemicals coursing through their veins?  Every minute I am on my feet doing dishes or laundry, awake and watching American Idol with my kids, driving someone somewhere they need to be, watching my kids do their sports and activities, is a small miracle, and the fact that the cancer has, for now, receded is simply icing on the cake.

If this is my quality of life going forward, I'd say I am very blessed.  To want to feel like I did before all this happened is only human, but I am officially going to align my expectations appropriately to my situation and try not to get so frustrated and grumpy when I am having a bad day, and I certainly won't continue to worry that the cancer is on the attack again every time I have a hard time getting up in the morning.  Par for the course.  Why did it take me three months to figure this out?  It doesn't seem that complicated!

I could not agree more with what one wise soul posted on the breast cancer discussion boards:  My favorite side effect is being alive!

Note From A Child Growing Up With Six Siblings

I just discovered what remains of Lindsey's Easter basket hidden in the garage with the above note attached.

In case you can't read it, it says:

Lindsey warning:  DO NOT TOUCH or become an Avox, get your limbs ripped off one by one.  Have a nice day!

A few thoughts on this note, written by my nearly straight A, very bright 6th grade student...

1.  So excited was she to get her message across that she misspelled her own name in her haste.  I was both horrified and amused by this.
2.  An Avox is a reference to the Hunger Games in case you are wondering.  It is a person who has been physically punished by the government for rebelling against it.  If you know Lindsey, you know she is obsessed with the Hunger Games, so this is not as awful as it sounds.
3.  Do you think my kids are just slightly wary of their candy being consumed by their siblings if they don't take drastic measures?  I had no idea things were THIS desperate...
4.  My favorite part?  Have a nice day!  That is soooooo Lindsey.
5.  Think I have some work to do as a mother as far as teaching my kids to respect each other's things and positive messaging in general?  Perhaps.

I don't think I'll go back in the garage for awhile.  I don't want to know what else is hidden in there!

Post-Surgical Report

For those of you following along and wondering how my minor surgery went on Friday, I am happy to report that all went well and, overall, I am feeling much better than I thought I would be at this point.

Since I don't believe I mentioned this ahead of time on my blog (because I have been less than consistent in updating), for those of you confused by this because you've never heard anything about it, I had to have a fairly minor surgery to remove an endometrial polyp that was causing me some trouble.  It was a simple, outpatient procedure that was complicated only by the fact that I am on blood thinners because of the major blood clot I had in my leg last fall and has still not dissipated.  Happily, all went well: I did not bleed excessively and I am recovering nicely.  The mass was biopsied several weeks ago so we already know that it is not cancerous, which is of course what we were most concerned about.

This was my first surgical experience at Cedars-Sinai and it was very pleasant (if this sort of thing can be pleasant).  I continue to be impressed by the staff and facilities I have come across (and I have hit four departments already in my first month, so my sample size is not small) and am very happy to be there.

Nonetheless, the situation is not without irony.  Jay's company was acquired this week by IBM and our health insurance will be changing as of June 1st.  Naturally, it covers UCLA.  If this had happened three months earlier, I would not have had to go through this transition.  But with faith that everything happens for a reason, I am certain I was meant to make the change.  And I am feeling quite lucky to have access to a very good health plan in the new situation, though it will cost us a bit more.

Next up: Regular systemic Herceptin infusion on Tuesday as well as an intrathecal (in the brain) dose.  Routine stuff for me now...can you imagine?

Surprising It Took This Long, Really

Tony hurt his elbow in a trampoline incident on Easter Sunday. A friend of Joey's accidentally landed on his arm causing us all to think it was dislocated. Jay raced off to urgent care, leaving me to slice the lamb (which, if you know me at all, is quite traumatic). X-rays didn't show anything definitive, so they sent him home with a sling and a lecture on trampoline injuries.

I know, I know...trampolines cause more injuries every year than anything else, blah, blah, blah. I don't doubt it's true, I just would like the people who self-righteously proclaim this to live with seven extremely active children for a full 24 hours with no trampoline or swimming pool and see how quickly they get on Walmart.com to place their order.

I knew between football, gymnastics, tree climbing and trampolining that it would only be a matter of time before we had a broken bone, but I am actually delighted that it took this long. Tony is the first official real cast in our family, and, at that, his injury is minor. (Lindsey once had a softball-related broken thumb, but this is the first actual cast.) So, I still consider us blessed in this regard as some of my friends, with active boys in particular, have spent many hours in casting rooms for limbs of all kinds.

At any rate, over the past 10 days, Tony's injury did not get better and he would not take his sling off. He is not one to nurse his injuries or refrain from rough play of any kind, so we knew something was not right. A visit to the pediatrician led to a referral to a pediatric bone specialist (incidentally, the same doctor who handled Natalie's hips) and Tony came home today sporting this fine cast.

The doctor could not clearly see what the injury is, but cited it as a fracture, telling me that the fluid accumulation and soft tissue swelling around the joint indicates at best a bad bruise and more likely a crack in the joint that cannot be seen. She casted it to be on the safe side and he is really happy to have it secure. He was always babying the arm in the sling and already I can see he is using his shoulder more now that the elbow is stabilized. The cast will come off on May 8th and he should be good as new. He, for his part, is delighted to have a PE excuse for a whole month and is busy collecting signatures on the cast.

The first one to sign it was Tony himself, and he wrote, "me". I enjoyed that.