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.

New Beginnings

I have officially made the switch away from UCLA to Cedars-Sinai. It is definitely different, but I think I am in very good hands and I like my new doctors very much.

When I first learned I had to leave my long-time oncologist who has done such an excellent job keeping me alive and who I trusted literally with my life, I was naturally pretty upset. I waited until the last possible minute to switch, hoping that Blue Shield and UCLA would make up. But they didn't, so I had to make the move.

I was recommended to my new oncologist, Dr. McAndrew, by so many different people and doctors that I have lost count, so I was quite confident that she was the one to see. Same thing for my new radiation oncologist, Dr. Burnison. As a double bonus, the two of them speak on a near-daily basis about their in-common patients and work very well in tandem. They will have plenty to speak about where I am concerned!

The most striking difference between UCLA and Cedars-Sinai is the amenities and service. Private hospital vs. public hospital, I suppose. Both the cancer center (radiation) and my oncologist (systemic treatments like chemo) have valet parking free (or $2, depending) for patients. I paid $11 at UCLA to hike a mile to my treatments (until I got my handicapped placard which then reduced it to $4, but still). This is WAY, WAY better.

Then there is the food and beverage service. As I received my first treatment in the much-larger infusion room of my new oncologist on Monday, a candy-striper-type volunteer walked around with a big basket of snacks of all kinds and offered to bring us juices, coffee, ice water, whatever. She circled back around about every 20 minutes in case we needed refills. I confess, I loved this and enjoyed some cookies and coffee...and chips...and ice water. My last oncologist had the juice and snack basket but you had to help yourself on the way in. Again, this is a great improvement.

The radiation oncologist's office had giant bowls of beautiful fruit on every table in the waiting room and a cappuccino machine with no coins required. Again, I really enjoyed this detail. My last radiation oncologist had saltine crackers in a bowl. Nice if you are nauseous, I guess...

Don't worry, I understand that the quality of the medical care is more important than the perks, but I think I am in equally good hands medically speaking with my new doctors. Both of them are women, so it was a very different experience for me in terms of their questions about details of my life and quality of life. The male doctors I have had are more down to business and all about killing the cancer (which is not a bad thing). But imagine how surprised I was when one of them asked to see pictures of my kids and the other asked questions about where our ancestors were from. They were both very concerned about how I was feeling just as much as how the scans looked and that was very nice. They both also spent an hour or more with my during my first appointment to be sure they understood my long and complicated history. They explained the details, pros and cons of various treatment options in great detail, which I appreciated. I already feel very well taken care of.

My oncologist has some ideas about new things to try to help stop the bone mets in their tracks and keep me in remission. It is nice to have a fresh look at my situation while at the same time difficult to transmit all of my history. There is always good and bad in every situation, but happily this all seems to be mostly good.

While I was getting my treatment a marriage and family counselor came by to see how I was REALLY doing and offered to counsel me, my caregivers or children, all as part of the service of the office. Another very nice touch.

Next week I will be having a bone scan, and an ultrasound to check on the status of my DVT (blood clot). We will decide from there what to do about my spine which is currently the only active cancer we are dealing with.

I feel very, very fortunate to now have and to have had access to the very best care from the beginning of this adventure. (And, now, coffee and cookies to boot!).

A Strange Sensation

While I was driving home today I got a bit warm (yes, I who am always cold), so I took off my hat and put it in my purse. I forgot I wasn't wearing it when I got home and got out of the car. I rarely if ever go outside without a hat.

As I stood there, just outside the car in my driveway, I felt something I haven't felt in nearly a year: I felt the wind blowing through my hair. It felt wonderful!

My "hair" is still pretty pathetic, about a quarter to a half inch long with thin spots and uneven growth. It is nearly all gray in the front and brown in the back. It has been many, MANY years since I have seen my natural hair color (I began graying in my twenties) so I am enjoying this virgin hair, never treated, so very soft.

I polled the kids recently on what I should do about this hair since it won't be long before I can go out without a hat. Should I color it or let it be? I am biased toward letting it be, as I am not embarrassed by my gray hair--I have earned every strand. I did not expect Julia's response: "I am too young to have a mom with gray hair! PLEASE color it!"

I guess I understand that, so I will probably at some point color it. But for now I am enjoying the sensation of this afternoon, of being able to run my fingers through the fuzz, of having something to shampoo, and I don't much care what the color is. I have some hair, and that is a pretty delightful thing.

Totally Upstaged

In the best possible way, though, because it was by my daughter. (Warning...maternal bragging post approaching, not for those easily made queasy).

I was "helping" Lindsey with her math tonight. In reality, I was watching her quickly figure out word problems that left me with my mouth hanging open. I did actually help with one where I could use an algebraic equation to answer, but all the other ones required approaches I could not even guess at.

There was this one problem that I was certain did not have enough information to answer. I won't go into the details of it in case every single person reading this blog can figure out the answer in 10 seconds or less--that kind of upstaging I couldn't enjoy. But I read this problem, realized that there was no way on earth I could ever figure out the answer and was about to tell her so when she asked me to check her work. She explained her answer and I could not believe how clearly she had seen the problem and how quickly she had figured out how to answer it. I didn't think there even WAS an answer, I thought the whole thing was a farce. But when she explained her reasoning to me there was no doubt she was right and it all seemed so incredibly simple.

In fourth grade, Lindsey struggled with math. She set a goal that year that in 5th grade she would make the advanced math class. All summer she asked me to print out math worksheets so she could practice, and darned if she didn't succeed in meeting her goal. She has gotten better and better at math ever since she realized that if she works hard enough she can meet any goal she chooses to set for herself. This is an invaluable life lesson and one that can't be taught except through experience, and I am so happy she has learned this at such an early age.

Oh, and in case you were wondering...I couldn't have figured this problem out even before the brain radiation, so I will not be playing that card tonight. (But I did consider it.)

"Thankful" Doesn't Really Cover It

My radiation oncologist's office called today, as I expected them to. I grabbed a pencil, ready to write down the date and time of my brain radiation now that my simulation (making of the mask that holds my head to the table) and small slice MRI were complete. The medical physicists had had enough time to figure out how to position the radiation relative to my brain lesion and I was ready to get it over with.

However, they did not have an appointment time for me.

Rather, they were calling to tell me that, from both the simulation CT and the 3mm sliced MRI, they could not find any evidence of any cancer in brain to treat. The 5x7mm lesion clearly seen in February is simply not there, and neither is anything else. They made no appointment because they can find nothing to treat.

To say I am stunned is an understatement. Yet, at the same time, I am somehow not surprised. I know that sounds crazy, but all this time so many of us have been praying for a miracle and, though many will say it was actually due to this past treatment or that medication, you all know what I think. I think we got a piece of our miracle.

This leaves two, far less concerning, areas to either investigate or treat (a definite lesion on my T9 vertebrae that hurts me a bit but will not kill me, and a minor biopsy taking place on Tuesday). I have seen the reports and all evidence shows that my body and brain are currently nearly free of cancer and the little I have can be well-handled with minimal side effects. All vital organs are entirely clear.

When I was imagining possible outcomes for my brain metastases, this was one I did not even think of. Who could?

Thank to you all who have prayed for this result so faithfully. Clearly, it is working.

Way Too Much Fun For A Monday Morning

We have had a mouse living in our kitchen for quite a few months. Every few days we see him, dashing from under the fridge to the dishwasher, or, most disturbingly, hopping out of the trash compactor when someone opens it. He has been getting steadily fatter as we are a great family to host a mouse, crumb wise. No matter how often we sweep the floor, it is a matter of moments before someone wanders through and drops more.

We have been trying to trap this mouse for months. At first (because he is awfully cute, just a little brown field mouse) we tried building a humane trap. After some internet research, Jay went off to Lowes and came back with buckets, wood, and various other items to build an elaborate trap. He covered a soda can with peanut butter, built ramps so the mouse could get up and then arranged the can so it would spin when touched, thus dumping the mouse into the bucket where we would find and release him the next morning. We didn't count on the dog, who licked all the peanut butter off the can overnight and then promptly got sick. Fail number one.

Next, we called pest control and asked for help. They set sticky traps at common entry points to the house. We never caught a mouse, but instead caught a baby snake. Seriously. We haven't felt quite comfortable at home ever since. Fail number two.

Then we set classic traps with cheese and peanut butter in his favorite hiding places. By this time, humane was no longer a consideration, we just wanted the mouse gone. Every morning we would wake up to find the traps licked clean and unsprung. This is one smart mouse. Fail number three.

During this time, we got a cat. She is a really great cat and we enjoy her on many levels, but it certainly crossed our minds that she could be of use to us as a mouser. Over the months, she has noticed the presence of the mouse and spends many hours staring under the refrigerator where she most often has seen him run. One time she caught him in her mouth but when Jay ran after her to collect the mouse she got scared and dropped him. Fail number four.

This morning, about 6:00am, before anyone else was awake, I was in the kitchen making the kids' lunches and the cat was in her usual position in front of the refrigerator. I opened the trash compacter and jumped when the mouse hopped out. Happily, the cat did not fail to notice this and within an instant had the mouse in her mouth. I started screaming, "Mittiny has the mouse, Mittiny has the mouse" and people started crashing out of bed and throwing open their doors. What a way to get the kids out of bed for school!

Mittiny ran up the stairs with the mouse in her mouth, lickety split, and proudly delivered it to Lindsey (her actual owner). As soon as she released the mouse and it ran, she grabbed it again and--get this--tossed it in Lindsey's bathtub where it could not scrabble out. What a smart cat!

We shut the bathroom doors and braced ourselves for carnage.

After about an hour, when the noises had stopped, Jay ventured in to see what we were dealing with. A very happy Mittiny came out, satisfied that she had played properly with her prey and pleased her owner, but the mouse was still very much alive and uninjured in the tub. Fail number five.

So, we had the mouse trapped, but the cat was clearly not going to finish the job (got to keep her a little hungrier, I guess!). Jay, my brave husband, scooped the mouse into a tupperware, got in the car and released it in a distant field, certain that even if it could remember how to get back to our house, no amount of crumbs would be worth another possible hour spent "playing" with the cat in the tub. I don't expect we'll see this mouse again.

See? If at first you don't succeed, try, try again!

Long Time, No Post

So sorry! To those of you who check this blog regularly, it must seem an eternity since I wrote anything. I will truly try to be more consistent.

The problem, as far as I can tell, is that I am vacillating between feeling well and not feeling well. When I don't feel well I sleep a lot and spend tons of time watching fine programming with my kids such as Phineas and Ferb and Spongebob while shivering under my warming blanket. My kids love this (and I am actually amused at some of the shows--scary, isn't it?). However, it is not very productive, so when I do feel well I immediately launch into hyperdrive and work to restore order to my life and my home. There is simply no place for blogging in either of these modes, so I am just going to have to be more consistent about feeling well, that's all. I'll be working on that...

I am busy preparing for brain radiation sometime in the next two weeks. I completed my simulation on Friday and my 3mm slice MRI on Wednesday. Good news from the MRI: it did not turn up anything smaller or new as my doctor had thought it might. There is just the one lesion and soon it will be jettisoned from my brain. Good riddance! The simulation is where they make your mask, strap you to the table (definitely not for the claustrophobic) and run you through the CT scanner so the medical physicists can figure out where to point the radiation relative to where your tumor is and where you will be positioned on the table. It is a very precise and impressive science.

Just for fun, we are also playing "beat the clock" as we race to get the radiation done before my insurance turns me into a pumpkin at UCLA on March 31. So far we are on track to get this done, but it does add a little excitement into the mix. I have my last Herceptin treatment with Dr. Glaspy and his amazing staff on Thursday. I will really miss them and hope everything wonderful I've heard about my new oncologist at Cedars-Sinai is true. I have no doubt that it is, but it is still difficult to leave a medical team you have trusted with your life for two and a half years.

I did visit one of my new doctors at Cedars-Sinai last week. He was great and knows my new oncologist well and also closed the loop about what he was doing with Dr. Glaspy. I really appreciate that attention to detail since there are so many little weird medical things going on with me--a formerly very healthy person--now. This new doc needs to do a biopsy on a small mass that is probably not anything more than a blood clot or a polyp, but with my history no one is taking any chances. So, off the Lovinox for a day and biopsy away! I am seriously praying it is nothing. I need another cancer like I need a hole in the head. (I mean another hole in the head...)

In the meantime, we have had no shortage of things to keep us busy. We have been agonizing over where to send Joey to high school and have very happily and finally come to a decision about that (Paraclete, yay!). That has taken a lot of stress off me and I know it is the best decision for all of us. Sometimes you just have to go through some songs and dances to get to what's best.

Bella had a birthday in late February and is now FIVE YEARS OLD. Crazy, but true. She is a sweet girl and I am so happy God gave her to us. We had a small party for her at Chuck E Cheese per her request. It was nice that everything was done for us and the kids loved it, but about halfway through the party Jay turned to me and said that the place represented every single value we are trying to steer our children away from: need for continual entertainment, constant push for more (tokens, tickets, prizes), etc. Guess we won't be having any more parties there!

I've also kept busy sorting out medical bills (some of my hospital stays were miscoded and insurance is not paying--but they will, I'm sure, it's just a million awful phone calls until they do), finishing taxes, and doing all the things I'm sure you are all busy with as well. Julia is starting her much-needed orthodontic treatment, Lindsey's Academic Decathalon team placed 8th out of 101 schools on Saturday, Sam is reading the Hunger Games (as we all have been doing), Natalie has figured out Club Penguin and how to spend her siblings coins...

In other words, life goes on. A blessing in itself.

Scan Results and What's Coming Next

The scan news is pretty good overall. My liver and lungs remain clear, which is so very important. I have a new lytic lesion on my T-9 Vertebrae (which explains why my back has been hurting of late, but how I was hoping this was just garden variety back pain!). But most significantly, I have a new brain lesion, in the right posterior lobe. It is still small, 5mm x 7mm or so. So, the question is, do we watch it and see what it does, or do we get it out of there right away.

Complicating the matter is the fact that I have Blue Shield and UCLA and Blue Shield have fallen out of contract (as I mentioned in another post). I have one treatment left with my current oncologist as my continuity of care runs out on March 31st. They have been clear that these issues will not be resolved within that time, if ever, so I need to find a new treatment facility.

Dr. Selch, my radiation oncologist, is one of the very best doctors in the world at treating brain metastases stereotactically (one single very targeted and very strong dose of radiation) which would mean no cranial surgery for me. UCLA in general is the pioneer of this stereotactic radiosurgical procedure, and if we are going to be removing this bugger, I want it done by Dr. Selch before I go to someone new. I know there are many excellent doctors in LA County, but I feel so comfortable with the ones I have, especially where my brain is concerned, that I am going to squeeze all I can before I have to move on.

So, I saw my radiation oncologist and my neurosurgeon yesterday and both are willing to push this through within my time limits and definitely recommend that we follow the path of immediate removal. They will be starting with another MRI, this one sliced ultra thin to 3mm. They warned me that when they slice that small they may find another lesion or two in which case they will take those out too.

I can't say I am surprised to learn I have a new brain lesion because, if I am like 99% of people with brain mets, they are likely to keep popping up every few months and my life will become like a giant game of whack-a-mole. I can say, though, that I loved these few blissful months of not knowing and just hoping that I would get a completely clear scan.

Again, this was not a bad scan. What is there is completely manageable and not currently life threatening. Nothing is out of control right now. It just means I have more treatment, sooner than I thought. But it is my understanding that stereotactic brain radiation has very few side effects and I shouldn't go through anything like I did with the WBR. Don't know yet what role Decadron, the evil steroid, will play in this but that will have a lot to with how I view the overall experience, I'm sure.

In the meantime, does anyone know of an outstanding medical oncologist at Cedars-Sinai? I already have a referral for a radiation oncologist, so we are getting there!

Almost Got Me

To my complete delight, I am back to cantoring. A light schedule to begin with as I get my sea legs back, but ramping up to normal as we approach Lent and Easter. I honestly did not know if I would ever sing again, and I cannot describe my joy at once again being able to "pray twice" as is so often said of church singing.

When I sing, I don't just hear the words as I do when they are spoken--I FEEL them. It's hard to explain, but when I am singing at mass is when I feel closest to God, and I really, really missed that.

For a few months after my brain radiation I had a significant general tremor that seriously affected my voice. I thought after awhile that it was going to be permanent, but as the Decadron cleared my system the tremor slowly left me and I found myself able to sing more or less as before, but with a little less breath control thanks to the bout of pneumonia, I suppose.

So, the reason I am telling you all this? When I am singing, I feel almost as if I am having a conversation with God. Some songs are written from his voice and some from ours. When I am singing one from his voice, I concentrate on what he is telling me that day, and when I am singing to him, I am thinking of exactly what I am saying to him, even though the words are someone else's, technically. It is a near perfect form of prayer for me.

Today we sang a song at Communion called "Our Blessing Cup" by Bob Hurd. Anyone who regularly attends mass anywhere should know this one. Anyway, I have sung this song a hundred times but never really focused on verse four, probably because we don't always get to that verse, and my perspective on life is quite different now so it wouldn't have meant as much to me before. All I know is that when we were practicing on Thursday I could not make it through the verse without crying. Happily, I made it through just fine at mass today because I had time to prepare myself, but I was worried it was gonna "get me"!

It was as if I were in a private conversation with God in front of the whole congregation:

Verse 4: "For you have heard my voice, for you have heard my pleading. Though death surrounded me, you heard and answered me."

A brief line, but it made quite an intense connection for me, because I believe every single word.

The Blue Shield Blues

Has anyone heard of the break between Blue Shield and UCLA? Blue Shield members are no longer covered at UCLA due to a breakdown in contract negotiations.

Guess who has Blue Shield? That's right, me.

Thank goodness that, after many phone calls and frightening moments, along with a week's delay in my treatment, Blue Shield has granted me a Continuity of Care exception and will continue to allow my treatments through Dr. Glaspy until the 31st of March, by which time they expect I will find a new doctor and treating facility.

Wow.

I have been with Dr. Glaspy and Denise (NP) and their wonderful team of chemo nurses since the beginning and he has done an excellent job of keeping me alive. I don't want another doctor. I don't want another treatment facility. What I want is for Blue Shield and UCLA to kiss and make up before I have to change.

As you all know, I have a Omaya Reservoir in my brain that many doctors do not have any experience with at all. There is no place like UCLA for cutting edge clinical trials. All my records are there. My Radiation Oncologist, who is one of the very best at stereotactically zapping tumors that dare to return after whole brain radiation and stretching out the amount of time patients with brain mets live, is there. I don't want to go, I don't! I know so many doctors and nurses there that I can't go to the cafeteria without seeing someone I know! (Scary, but true). I feel like UCLA is a strange kind of home away from home and I hate that I am being forced to look elsewhere. I hold on to the hope that they will settle this before the end of March, but neither side seems to think this is going to happen when questioned.

We are lucky enough to live in an area with lots of good cancer treatment centers and there are many good oncologists around. I just don't want to find one of them. I am happy where I am!

Blue Shield has given us excellent coverage during all of this and I have been so fortunate to have had the coverage I have had. Is it greedy to say that I want more? Well, I do.

But, like I always tell my kids, "You can't always get what you want..."