Monday, November 30, 2009

Hip Hip Her2-Ray

Just when you think you've got a plan, everything changes.

We learned today that my cancer is Her2 positive. We had been waiting for a pathology culture that tested for this and it came back today.

At first glance, this might seem unfortunate. Her2 positive cancer is very aggressive and historically has a poor prognosis. The Her 2 receptors, as I understand it, cause the cells to divide rapidly and get out of control quite easily.

However, Dr. Chang (my surgeon) declared that this was "outstanding" news because it means that an aggressive treatment option, previously unavailable to me, is now open. In her experience, treatment with Herceptin (a relatively new drug for Her2 positive cancers) gives us a chance not just to halt the growth of the cancer as the hormone therapy might, but to possibly shrink it back. In particular, it has a unique chance of getting rid of Her2 positive cancer cells that have spread outside of the original tumor (in my case, liver and bone). Other therapies cannot do this. Dr, Chang had told me last week that she was hopeful we would get a positive result, and was nothing short of delighted when she called to deliver the news that we had indeed achieved this.

I have yet to discuss what this means to me practically with my oncologist. However, within an hour of receiving these results his office called to set up an appointment, so clearly he intends to move quickly with an alteration to my therapy. I see him on Wednesday.

Herceptin is most often given in conjunction with chemotherapy. So, just when I thought I'd have three months of not-too-bad, I am now likely faced with "here we go". But you know, I'm ready for this. I want to really feel like I am hurting the cancer and so far I have not felt much of anything.

So, bring on the baldness, the vomit, the fatigue. I am stronger than you, cancer, and we are going to bring you down!

Thursday, November 26, 2009

More Thankful Than Ever

I am acutely aware of my blessings on this Thanksgiving Day. Never before have they seemed so bountiful...and fragile.

I don't belive I have ever been so thankful to simply be present at the table, sharing the meal with my family. Nor have I ever really appreciated the strength I had to help prepare the meal and clean up after it. But I did today.

I am beyond grateful for my marriage, unshaken by life's twists and turns, that will endure all things to come, and for my extraordinary husband who makes me a better person.

I am so very blessed by my seven healthy children. Today I delighted particularly in their observations and activities, and simply enjoyed the buzz of their circulating around me. (Until, that is, the buzz got so loud that it annoyed me, at which time I chased them all out of the kitchen unceremoniously.)

No one has ever been surrounded by a more supportive and loving community of family and friends, both near and far. I am thankful for every email and phone call and blog comment I have received, letting me know you are all thinking of me and wishing me well.

I am thankful for doctors and researchers, and for all who have traveled this road before me and helped to pave it.

But most of all I am thankful for my faith, which is strengthened through my own weakness. Without it, none of this would make sense.

Happy Thanksgiving--may your blessings be counted as many!

Wednesday, November 25, 2009

Wishing For My Own Personal Summer

I am waiting.

Just waiting for hot flashes, night sweats or any other tell-tale sign that the estrogen is departing my body in a hurry. So far, all I'm feeling is tired and occasionally dizzy, and that is not definitive enough for me. I want to FEEL that I'm kicking this cancer where it lives.

Perhaps I should just be grateful that I'm feeling well (and I'm sure when symptoms do kick in I will wish myself right back where I am right now) but I'm ready to feel something, anything that tells me we are gaining some ground.

After so much activity and lots of news in such a short period of time, I think I am going to have trouble adjusting to this waiting period. Three months with no progress reports, feedback or status is going to seem like three years.

Thanks for waiting with me and keeping me afloat.

Because There Are Other Things In Life Besides CANCER!

I don't know what's wrong with my photo editor, but if you can focus on this microscopic image you will see that it is a photo of my very happy eldest son Joey, clutching his second consecutive Superbowl trophy. It was earned last Saturday in a complete domination (28-0 I think) of the Jets, his team's long time Rivals. The boys end their regular season undefeated and, all told, it has been 22 games since they have lost. As wonderful as this is, it's starting to get a little boring...we haven't seen a really close game in a year!

In search of a challenge, the Rebels will be traveling to the Jr. Rose Bowl next week in Anaheim where they will attempt to defend their title as champions. In addition, they play the Superbowl champs of the Los Angeles Youth Football League on December 12th.
Thank goodness it's still football season around here, because it is a great distraction for the whole family.

Tuesday, November 24, 2009

Guerilla Warfare

First things first: I am delighted with my Oncologist. His name is Dr. John Glaspy and I am completely confident in his ability to handle my situation in the best possible way. He is the Chief of Oncology/Hemotology at UCLA and a very published researcher who will know of and have access to the newest and most advanced cancer treatment therapies as they become available over the years. I am fortunate to be in his care.

As we suspected would the case, the game plan has changed now that the cancer has spread. Initially we thought we would attack it hard and cut it out, in hopes that we would kill it all and be done with it. This is no longer an option for me. As Dr. Glaspy explained, if we try to win this war, it will kill me in the process. Short of a miracle cure (which, by the way I am most certainly NOT discounting), I will always have this cancer and I will alway be fighting it.

Now, I must admit, this has taken a little swallowing, this change of mindset. When you have something dangerous and unwelcome growing in your body, every instinct you have is to squash it out and dominate it completely. Instead, I must learn to co-exist peacefully with this. The goal is this: keep me alive as long as possible with the best quality of life possible. Really aggressive treatments are not sustainable over the long haul (and believe me, the long haul is what we want!) so for now we are going with the old adage "slow and steady". It won't win the race but should give us the best combination of results.

Like guerrilla soldiers, we will not attack head-on or draw battle lines. Instead, we will constantly annoy it...drop grenades on it from here and there instead of firing bazookas. As good guerrilla fighters, the first thing we are going to do is cut off the cancer's food supply and watch it flail around for awhile. This should make it good and angry.

My particular cancer, as Dr. Glaspy explained it to me, is addicted to estrogen. It is what it feeds on to grow. If we cut off the estrogen available to it, it should cease growing for now, and may even shrink a bit. This may work for a few years (or much more or much less) and then, when we need to, we will talk about what needs to happen next. All the avenues of chemo treatment are still open to me, but we won't break them out until (and if) the cancer stops responding to this starvation, which is called "hormone therapy".

So, you may ask, how do we cut off the estrogen supply to the cancer? By completely removing it from my body in a very short amount of time. Like the cancer, my body is not going to enjoy this very much. Essentially, I will be passing into complete menopause in a matter of days. Most women find this uncomfortable spread over months as the body adjusts, so he has warned me that I am likely to find it quite uncomfortable for a few weeks. Still, it all sounds better than chemo to me, so it's all relative at this point!

This is the plan: we will begin to shock the estrogen out of my system today with an injection and oral therapy that will continue for 3 months. At the end of 3 months we will re-scan my entire body to see if we have indeed halted the growth of the cancer. If it is working, we will remove my ovaries to make my post-menopausal status permanent and consider whether or not to proceed with the masectomy, depending on how the breast tumor is looking.

Warning: I am apparently going to be intensely crabby and weepy over the next few weeks. (Pray for Jay!) It has been suggested to me that I consider laying off the blog during this time in case I alarm any of you with what are sure to be crazily shifting perspectives on all of this. I may and I may not, but do be forewarned as to the potential instability of my sanity as my body adjusts. By all accounts it will return eventually.

Oh, I almost forgot to mention the really good news in all of this: So far, the spreading cancer has not done much damage to my liver. It is sprinkled all over it like fairy dust, but has not really dug in anywhere and affected its function. So, if we stop this thing where it is I can literally live for decades with it. That's right, decades! This is so much more than we hoped for when we walked into that office yesterday, and hope is such a good thing.

Of course, the less attractive alternative remains that the cancer does not respond to hormone therapy at all and continutes to grow over the next three months, so please pray specifically that it responds (and keep up with that whole complete miracle cure thing too, if you don't mind!).

Thanks again, amazing family and friends. You teach me strength, faith and charity, and humble me with your kindness.

Sunday, November 22, 2009

The Agony in the Garden

Since Monday, my meditations on the mysteries of the rosary have taken on a new light. I suppose this is natural, since I have experienced this before through other events of my life. As my perspective on things changes, so does my understanding of the events of the lives of Jesus and Mary. This is part of why the rosary is such a beautiful prayer.

I find myself suddenly with new perspective on what it must have been like for Jesus while he waited and prayed in the Garden of Gethsemene.

Jesus knew what was coming. He knew the soldiers would come for him, and he knew he would suffer great physical and emotional pain, though at that time he was only experiencing the agony of anticipation.

He knew he would be leaving his disciples to fend for themselves and had to trust that the principals he had instilled in them would bear fruit. He also knew they would stumble along the way.

He prayed that this cup might pass him by. Yet, even in his distress, he remembered "Thy will be done, not mine."

He watched as his friends repeatedly fell asleep, though he asked them to wait and pray with him.

Like Jesus, I know what is coming. I know that the soldiers are coming for me, though I can only physically sense the barest hint of their presence right now. I know that there will be great physical and emotional anguish ahead for me and for my family and friends, yet right now I see only the graces that this situation is bringing as my community surrounds me with strength.

Like Jesus, I know that I may be leaving my children, hopefully not physically anytime soon, but to a degree, while I turn to face my battle. I must trust that God, with the assistance of my family and friends, will guide them through the worst parts of this when I am unable to, and that the seeds we have planted in them will bear great fruit in this time of trial.

Like Jesus, I fervently pray that this cup might pass me by. But always, His will be done.

However, unlike Jesus, my friends and family have not fallen asleep. You are all very much here with me in the garden and wait, wide awake, to face this by my side. Because of this, I will never truly understand the depth of Jesus' suffering. Thank you.

We always teach our children to pray, "Please let me be like Jesus." Well, now I have the chance.

Friday, November 20, 2009

It's Time for a Miracle

Family and friends,

It is with a heavy heart that I tell you that this cancer has spread to my bones and, apparently, to my liver as well. I am in complete shock, as I don't feel sick. How could I get this sick and not know it?

I know many of you will have questions about treatment going forward, prognosis, etc. I cannot answer those questions right now. I don't know what this means in terms of my treatment or lifespan. I will know more after I meet with my oncologist Monday. Right now, all I know is that I am in need of a miracle which do, as we all know, occasionally happen.

And please know this: my faith is unwavering. I trust in God completely and am not afraid, except for how it will affect my children and all of you. Please be strong for me.

For those of you Catholics out there, I want you to know that I am praying to Don Alvaro, former prelate of Opus Dei, who is under consideration for beatification. He needs credit for interceding in a miracle to become a saint, and I need a miracle, so perhaps the two of us can hook up. If you are so inclined, please check out this link to his prayer card and join me in making so much noise in heaven that God heals me just to shut us all up, if nothing else.

In the meantime, I am planning to enjoy my weekend and watch my kid win his second Superbowl. Go Rebels!

I love and appreciate you all.

A Medical VIP

The good thing about having a big, nasty tumor, especially at my age, is that it gets everyone's attention. I am no longer plagued by the waiting periods that characterized the time in between the mammogram, the biopsy and the ultimate diagnosis. For me, waiting is one of the hardest parts, so all this activity is good for my psyche.

Yesterday I had five procedures done at UCLA, one after the other: PET/CT, chest X-Ray, blood work (including a check for the "breast cancer gene BRCA1-BRCA2), EKG, Echocardiogram. All were in the same building (one of the best parts of going to a university setting for treatment).

I had no pre-set appointments. I just walked from one counter to another where, inevitably, there were quite a few people waiting for the same test. I went to each counter with my paperwork, told them who I was, and as soon as I said my name there was a flurry of activity behind the desk, words thrown around like "we've been expecting you", "STAT reading", "same-day results", and "we'll squeeze you in even though we're overbooked and two techs have the flu". It was the least bureaucratic, smoothest process you could imagine. This part was a comfort (although it should probably scare me a bit!). What it tells me is that my case is being taken seriously, and that my surgeon is well-respected and can get things done. I like that. I am on the conveyor belt for a cure and, right now, I don't have to make any more decisions. I believe I have the very best doctors I could have, so I am pleased to lean on them and let them carry me along while I work on educating myself in parallel. Lots to read!

I am back to UCLA today for my final initial test, a bone scan. I'm there again on Monday to meet my Oncologist. Then, I should have a few days of respite to get my ducks in a row and celebrate Thanksgiving with my family. The Monday after that I begin fighting this officially.

Again, a million thanks to all of you who have written or called. I have not been able to respond to everything but please know how much I appreciate each and every contact I have received. I am drawing the strength I need for this journey from your support and prayers. Between each procedure I open up my mail and, to my delight, find notes of encouragement and support. How lucky I am to not be alone in this.

Wednesday, November 18, 2009

Encouraging News

After much bad news we finally heard something positive!

I met with another surgeon today, Dr. Helena Chang. She is the director of the breast cancer center at UCLA and comes very highly recommended. We liked her very much and feel that we are in good hands.

She believes this is treatable and that a cure is a likely outcome. This is the first time since this began that I have heard this, so this was a big moment for me.

That being said, I remain a challenging case and this next year is going to be very difficult for me. Like the other surgeon we met, she believes that chemotherapy prior to the surgery is the way to go to shrink the tumor enough to ensure a clean margin during surgery. So, beginning the Monday after Thanksgiving I will start several months of chemotherapy and am looking at surgery in April or May.

This week I will be busy with all the pre-tests, bloodwork, body scans, etc. required to be sure the cancer hasn't spread and that I am
otherwise healthy enough to withstand the chemotherapy. Also important is a culture that will tell us what kind of chemotherapy to use with this particular cancer. I will meet my Oncologist as well.

I still can't really absorb that this is happening to me. Yet, it is, and the good in it is evident in all of you who are praying, writing, calling, and offering to help with whatever we need. Thanks will never be enough.

Tuesday, November 17, 2009

I Think I Liked "No News" Better

Well, I met with the surgeon today. He confirmed what I already suspected, that this is a fairly aggressive cancer and that I will need a complete masectomy. He set me up with an oncologist and a PET Scan so they can assess whether or not the cancer has spread outside of the breast. He saw nothing that indicated to him that it has spread, so I am hopeful.

Chemo is in my future, potentially both before and after the surgery. I am ridiculously and superficially concerned about losing my hair, as if it really matters that much. It will grow back. Still, the kids are going to be merciless with the bald jokes...

I have an appointment with UCLA tomorrow for a second opinion. We liked the surgeon we met today just fine but it seems a second opinion for something this major is in order. They may recommend a different course, in which case we will need to make some decisions.

I am overwhelmed by gratitude for the prayers, support and help I have received from far and near. Especially I am grateful for my church and school community who are mobilizing in an unbelievable way to help us through this. Words cannot express my heartfelt thanks.

Keep praying! It's going to be a long road, but I'm determined to beat this.

Monday, November 16, 2009

Not What We Hoped For

Here we go...

I have cancer. I can't actually believe it yet but it seems to be true. I will know more tomorrow after I meet with the surgeon.

Thank you for your continued prayers, they are what's holding me together.

Saturday, November 14, 2009

Seven for Seven

It's official! Now that Joey is down, there is no one left in my house to catch the flu...except me, but since I don't intend to get it I am declaring that in 24 hours we will be DONE.

Here's to dubious achievements!

Friday, November 13, 2009

No News Is Good News, Right?

Well, it's not bad news, at any rate. It's just no news.

The doctor's office called and said, hopefully, I will know something Monday. The pathologist hasn't signed off on the sample yet, though it has been on his desk all afternoon. Of course I'm full of crazy ideas about why that might be, but that's just my imagination.

So, thanks for worrying along with me. I'll let you know as soon as I know.

Thursday, November 12, 2009

A Good Distraction

If you need to distract yourself from any of life's difficult situations, may I suggest this trick which is currently working very well for me.

Have your family contract the stomach flu, watch them go down one by one like dominos, and eye your few remaining children as if they were ticking time bombs. Watch your husband go down along with them.

I am finding this an extremely effective distraction on this day when I most desperately need one. So, gifts sometimes do come in very strange packages.

Wednesday, November 11, 2009

The Unthinkable

There is something wrong with my breast.

For several months a dense mass has been developing. At first I thought it must be related to breastfeeding, some kind of mastitis. During the summer Natalie started refusing the affected breast, so for the last several months I only fed her on one side. I thought this odd but wasn't particularly alarmed since I know some babies do this for no reason at all.

In September I went for an Ultrasound. They could not do a mammogram because I was still nursing and the milk makes it unclear. The tech said she really couldn't see anything but could definitely feel the mass so I should come back for a mammogram when I was finished nursing.

I began to wean Natalie shortly after this, in anticipation of a mammogram. It was a little earlier than I would have liked, but I felt that I should not let this situation continue unchecked.

I went for my mammogram last week. It showed "architechtural abormalities", skin thickening and calcification, none of which are good to have, but no specific mass, so the radiologist ordered an MRI and a biopsy. The MRI confirmed and pinpointed areas of suspicion.

I have just returned from the biopsy and am now waiting until Friday when there should be a preliminary report on the pathology of the samples they extracted today.

No one seems to know exactly what this might be. It is suspicious, but not a clear-cut cancer. On a scale of 1-5, 1 being clearly benign and 5 being clearly cancer, the radiologist rated my "spots" a 4. She also said that if it is cancer, it is an agressive one given how fast things are changing. Not something you want to hear.

On a more positive note, she mentioned a rare, benign condition called "granulomatous mastitis" which seems to fit my symptoms nearly exactly. It shows up in women generally within 18 months of a pregnancy. It is still not a good thing as it requires major surgical intervention, but at least it is not cancer. I am in the strange position of hoping that this is what I have.

I write this today asking for your prayers for a positive outcome to all of this. I think that whatever the outcome, I have a bit of a journey ahead of me and I am greatly comforted by my friends and family, even those of you who read this blog and have never met me personally.

I am grateful most of all for my faith, which remains strong and gives me peace. I am certain God is firmly in charge of this situation and will not give me more than I can handle.

I will post the outcome when I receive it, hopefully Friday. In the meantime, please think positively for me!

Wednesday, November 04, 2009

It's All in How You Phrase It

We were all sitting around the dinner table the other night when Julia burped. Loudly, without restriction.

Now, Jay and I are soft in many areas (sweets, TV, for example) but table manners is not one of them, so we reacted immediately.

I said, incredulously, "Julia, did you just BURP at the dinner table?" in my best "How Could You!" tone, while Jay shot his famous "Dad is Disappointed with You" glare.

She looked up innocently and said, "No!"

"What was that, then?" I asked skeptically.

"Just air coming out of my mouth," she replied without missing a beat.

When the hysterical laughter burst out around the table I knew my chances for discipline were slipping. When Jay and I couldn't help joining the laughter, they were completely dashed.

Sunday, November 01, 2009

Hint Taken

Okay, okay, here are the photos of the kids in their costumes...I can take a hint!

Lindsey the Eskimo carried Pooh Bear Bella all around her school's carnival. It was very sweet.

Sam the hot dog...

Sam was nice enough to loan Tony his football gear so he could be an official player, just like his big brothers.

Julia was a beautiful flamenco dancer.

And here are the girls dressed for the All Saints Day mass at school. Lindsey is Mary and Julia is St. Rachel the Matriarch. Not sure Mary ever wore black sneakers under her mantle, but, hey, she probably didn't have P.E. in the middle of her afternoon, either.

Joey did not really "do" Halloween this year, so no photo of him. He wore his football pads to school and went trick or treating as "the Ultimate Steelers fan" in his Jersey and belt.
I never even dressed Natalie in her clown costume. Some mom I am! She is just so wiggly and drooly that I opted for practical, regular clothes. Clearly she is the seventh child, poor deprived thing!
Hope everyone had a very Happy Halloween...and Merry All Saints Day!