Wednesday, December 30, 2009

Rough Week

It took the dawning of a much brighter day today (odd, since it was raining) for me to realize how tough the last few days have been for me.

My mother was admitted to the hospital on Sunday with a severe kidney infection that resisted antibiotics for several days before succumbing. On Monday I thought she might not make it.

Happily, the infection broke and she was discharged this morning. I am relieved to have her home not only for her health's sake but also because she was in the hospital in Los Angeles which is about an hour's drive from me. It was a strain to have her so far away.

This marks another in a series of medical problems my mother has had lately and it is so very hard to watch her go through all of this. I am reminded often these days how fragile health is and how so many of us take it for granted when we have it.

Funny how I can handle my own medical issues better than I can watch someone I love go through them. I suppose this is happening so I can learn to understand what my family and friends are going through watching me struggle.

I am so very weary of doctors, hospitals, lab tests, imaging, waiting rooms and injections. How I long for the days when a visit to the doctor's office was a rare event not only for me but for anyone in my family.

Since it doesn't look like those days are coming back for me anytime soon, I must learn to find the good in the present situation. I think I can, I think I can... Actually, I KNOW I can, I KNOW I can.

Friday, December 25, 2009

Merry Christmas!

Well, this year for the first time in my adult life I did not send out Christmas cards, so this is our official family Christmas greeting. Merry, merry Christmas to all!

Thanks to Robin, my wonderful neighbor, who corralled the kids for this photo. If she hadn't, I fear there would be no annual photo at all. And I'm so glad there is!

This is particularly amusing to Jay and I, as it marks the second Christmas photo in a row where Bella had to be held up from the bottom to be in the photo. Every group picture we have of her shows her screaming. She does not like to conform, that's for sure.

At any rate, I hope you all have a blessed Christmas and amazingly wonderful New Year. I think 2010 is going to be a GREAT year!

Thursday, December 24, 2009


If you are interested, check out this link that gives the best summary I've read of the T-DM1 drug I am currently taking.

Thanks, Donna, for sending this to me.

Keep in mind as you read this article that the results they are citing are for women who have had as many as seven different treatments fail before receiving this drug. For me this is a first-line treatment, so we can hope that the results will be even better.

How wonderful that companies and doctors are working together in an unprecedented way to reach and really help people with this. It gives me hope for humanity!

Tuesday, December 22, 2009

The Annunciation

As you may recall from my earlier post on the Agony in the Garden, I have been thinking of the mysteries of the rosary in a new light lately, by trying to place myself in the events that took place so long ago. (There is nothing like the diagnosis of a possibly terminal illness to jump start your prayer life, let me tell you!) At any rate, I thought I would share some of my reflections on the Annunciation from my new perspective on things.

Lately I have been thinking that many of my feelings following diagnosis must be similar to those that Mary had after the Angel Gabriel visited her to tell her that she would be the mother of the long-awaited Messiah.

When Mary first saw the Angel, she must have been afraid and apprehensive. How majestic and frightening must have been this glorious creature sent to communicate with her! She must have wondered with trepidation, "What is happening to me? Why am I here? Am I in trouble? This could be very bad!"

Although the creature sent to share my news with me was necessarily less glorious than the Angel Gabriel, she was every bit as majestic and frightening to me, because she held the answer to the rest of my life in the little manila folder in her hand. I stared at her with apprehension much the same way Mary must have stared at the angel Gabriel, and I can tell you that all the same questions were running through my head as well. "Why me? Is this really happening? I must be dreaming."

(Now, here the similarity briefly ends. While among the angel's first words to Mary were "Fear not, you have found favor with God," mine were more along the lines of "invasive carcinoma." Not the same thing, I assure you. But after this we get back on track...)

Mary must have been overwhelmed when the understanding came to her that she had been chosen by God among all others to bring forth Jesus. As a good Jewish girl, she knew what it meant that the Messiah was at last coming, and how amazing it must have been to her that she was THE ONE. Yet at the same time she must have been worried about what was ahead. The angel did not give her a lot of details, and there was much she had to be concerned about. She was, after all, engaged to be married and how was she going to explain this to her husband to be?! Not to mention the pressure that must go along with mothering the Savior of the World. Yet, she took a deep breath, trusted God, said 'yes'.

It didn't take long after my diagnosis to realize that I, too, had been chosen by God. This did not just happen. 38 year old, otherwise healthy women with no substantial family history of cancer do not wake up one day with stage IV cancer as I did. Especially ones who have birthed and nursed as many babies as I have, as each one reduces the risk of breast cancer. It took the perfect storm of events to allow this to grow so long undetected inside of me. No, indeed, this was not an accident. Nor do I believe that God is punishing me with this. So, there is only one conclusion left: this is a gift.

Crazy, you say? Many will think so, but I do not. I firmly believe that God gives us what we need to become better people and for some reason I needed this. This is an opportunity for me to learn charity from those around me, to smooth the rough edges of my pride and to come to appreciate what is really, truly important in life. God would not have picked me for this great trial if he did not think I could handle it and rise to the occasion. And I certainly intend to do so to the best of my ability. So, like Mary, 'my soul proclaims the greatness of the Lord, and my spirit rejoices in God my Savior; he has looked with favor on his lowly servant. The Almighty has done great things for me and holy is his name.'

Also like Mary, I do not have many details about the future. I have things that concern me and much uncertainty. I did not have an angel to tell me to fear not as Mary did, but I do have wonderful priests in my life who have told me again and again, both directly and through homilies to never, ever be afraid. And I am not. I hear God speaking through them and I am listening.

I did not have the opportunity to say "yes" to this cancer, and I can't honestly say that I would have had the strength to do so if asked. However, now that it is mine, I embrace all that I have to learn from it. Behold the handmaid of the Lord.

Monday, December 21, 2009

More Sobbing

Once again, tears of joy and gratitude were falling from my suddenly oft-wet face yesterday. This time, however, they were not in public.

Instead, these tears were shed in the privacy of my own room, when I took note of just how much my primary breast tumor has shrunk in only a week. It is absolutely incredible and if I could not feel it myself I would not believe it.

Mind you, there is still a pretty big tumor in there. But just seven days ago there was no evidence of pliable or healthy tissue at all. Now, there is what seems to be quite a bit of soft, healthy tissue with a distinct lump in the middle. Everything is different, and I almost cannot believe it is true.

My doctor told me I should expect to find a noticeable change in the first week; but this much I did not expect. He also said it would be a good barometer for what was going on in the liver and bones as well, so I am so very hopeful.

Perhaps one of these days I will stop blubbering (and sleeping) long enough to post on another topic, but for now thanks for bearing with me through what is sure to become known as my "cancer period". It is too easy to develop a one-track mind when something like this is going on your life. I appreciate your continued readership!

Thursday, December 17, 2009

Can't Stay Awake

After an initial hurrah over my mild side effects, I have since taken to bed and can hardly get up.

Today, for instance, I got up at 6:30, went to mass, loaded the dishwasher, hit my bed again by 10am and have not removed myself since. I have been sleeping, and sleeping, and sleeping some more. I did not know anyone could sleep this much, especially me who rarely even sits.

Last night I drove myself to mass (I definitely have a much-needed mass theme going on) and then fell asleep in the parking lot, taking a good 20 minute snooze before I could muster the energy to walk across the street and into the church. I feel like a narcoleptic!

Nothing serious here, folks. This could be way worse, I know. But as soon as I sit up I feel weak, nauseous and head-achy, all of which disappears when I sleep. Therefore, sleep is my good friend.

I, who LOVE to eat, is forcing myself on doctors orders to put down three square meals. This may be the strangest part of all, as generous people are filling my kitchen with food that looks so good. Normally, I would be ALL OVER this! Luckily the 8 others in the family are, and I am so grateful to not be thinking of what to feed them right now.

As I sleep, I imagine the cancer killing going on inside me and, believe me, my dreams are sweet as a result.

Tuesday, December 15, 2009

Quote of the Day

Well, I did end up having a few side effects to the treatment, but nothing too horrible. On the drive home I felt like I had come down with the flu...chills (I could not get the car warm enough to Jennifer's dismay), aches and some nausea. By the time I got home I was feeling pretty poorly and went straight to bed. But it really did seem like a standard flu and nothing worse.

This morning when I woke up I felt as if I had been in a minor traffic collision. Everything hurt, even my cheekbones. But when I got up and started moving around I began to feel pretty normal. Aside from being generally quite tired and a little run down, I feel actually quite well. I am pleasantly surprised.

I even felt well enough to give Sam some lessons this morning (he, by the way, is going back to school in January, but I am closing things out to the best of my ability before then). It was during a poetry lesson that he left me in stitches.

Me: We are going to practice using some metaphors and similies. I am going to give you a phrase and you complete it. Ready? 'The girl was as mad as...'

(I am thinking to myself that the word hornet would complete this phrase well.)

Sam: (after a moment's thought) Eight monkeys with seven bananas.

What a joy it has been to spend these months homeschooling this clever, funny, smart boy. I am going to miss him.

Monday, December 14, 2009

So Far So Good

The cancer killing has officially begun. I am sitting here in my infusion room BarcaLounger with all of today's medicine coursing through my veins. Hopefully, at this very minute the T-DM1 miracle drug is chasing down cancer cells, entering them through their little HER2 receptors and imploding them violently from within their very own nuclei. I am really enjoying this imagery.

So far I feel pretty normal. No nausea, vitals are all good. And I should know, as they are checking them every 15 minutes! Right now I am in the 90 minute post treatment observation period so I am basically just sitting here with Jennifer, laughing, reading and snoozing a bit. They even have snacks and hot tea, so it's almost like I'm in the Red Carpet club here. Destination unknown.

I have really lucked out with this study drug, even more than I knew. What I am receiving, I learned today, isn't even really chemotherapy. The drug I am receiving is technically an antibody, which means I don't need any of the steroids, anti nausea meds or Prilosec that normally comes in concert with standard chemotherapy. As an added bonus, I don't have to come back the day after each treatment to receive the often-painful white blood cell stimulating injection I was dreading. If this new drug is as effective as my doctor believes it to be and it is as easy as all this, I'm thinking that I should really buy myself some Genentech stock.

On another note entirely, my treatment nurse is wearing a scapular. I consider this to be an excellent sign.

I am sure fatigue is on the way as this battle rages on within me, but at this moment all I am feeling is relief and profound gratitude.

Treatment Day

I didn't sleep too well last night. As it turns out, it is a lot easier to think cheerfully of chemotherapy in the abstract than it is to actually face it.

But don't get me wrong: I am not terrified or morose. I am just a bit apprehensive. I don't know what level of side effects to expect and this scares me a bit...fear of the unknown and all. Plus, there is the lurking concern that this treatment won't work. But I won't know that for nine weeks, so no sense in worrying about that now.

So, let's focus on the positive: today the cancer that has been happily growing in my body is going to have a very bad day. And I don't expect tomorrow or the next day will be much better for it. So, HA!

Let the games begin.

Wednesday, December 09, 2009

I Guess I Shouldn't Have Been Surprised

When I picked up the kids from school yesterday, I enthusiastically shared my news of the clinical trial and the new drug. As I drove, I explained how lucky I was to be in the trial and how promising the treatment was. They were definitely happy for me, I think mostly because they could see how happy I was about it all.

I was going along, outlining all the good things that this meant for us when I came to one of the best parts: that I wasn't going to lose my hair after all. I paused and waited for them all to join me in what I was sure would be a unanimous cheer.

Well, it was unanimous, alright, but it was not a cheer. Instead, it was a groan. With a few "awwwws!" thrown in.

I looked at them in total surprise and quickly learned that they were all actually looking forward to my bald head and had been deciding on my behalf exactly what was to be tattooed on it.

Apparently I have ruined the only fun they saw in this whole cancer thing.

(Sorry, guys.)

Tuesday, December 08, 2009

Prayers Answered

I have been officially accepted into the clinical trial (thank you, Genentech).

I have been randomized into Arm A of the trial, which means I get the very potent and promising trial drug (thank you, prayer warriors).

I have my first treatment on Monday (thank you, God).

I get to keep my hair (I don't really know who to thank for this one but I am certainly grateful).

I received the call from the study nurse letting me know all of this while standing in the toothpaste aisle at Target. When I hung up I couldn't help but cry, as I was so overwhelmed by gratitude. My dear friend Jennifer held me up and wisely reminded me, when I expressed concern about how I was embarassing myself in public, that there really wasn't that much remarkable about a grown woman sobbing into a Listerine display in the Palmdale Target. Point taken.

Yes, it is a good day. I have NO DOUBT that this fantastic news is a direct result of all the prayers being said on my behalf. I am filled with hope and the certainty that God is listening. Thank you so very much.

Sunday, December 06, 2009

A Golden Ticket

Do you remember in Charlie and the Chocolate Factory when Charlie unwrapped his Wonka Bar and found the Golden Ticket when he wasn't expecting it? This is what happened to me on Thursday when my oncologist called me unexpectedly to tell me he had obtained a slot for me in a small and very sought after clinical trial of a new drug for Her2 positive metastatic breast cancer.

Specifically, the trial is for women who have not already been treated with other chemotherapy, so I am extra fortunate this slot came up when it did, as I was supposed to start my standard treatment tomorrow. Instead, I found myself running back and forth to Los Angeles at the end of the week getting myself enrolled, and completing all the extra tests required for the sponsor. I don't think there is a single part of my body that has not been scanned, poked or processed in some way. They should definitely have a pretty clear picture by now of what things look like.

Now, I don't much about biochemistry or genes or cancer cell receptors, but I do know this: my rather even-keeled, realist of an oncologist, who is one of the eight UCLA oncologists on this trial, showed excitement that I have not yet seen and spoke of the high hopes that this new drug is giving. Further, the research doctor who came in to explain the medication and trial to me said straight out that if anything was going to CURE my cancer, this was. Two weeks ago I was told there was no hope for a cure, and hope is such a beautiful thing.

This new drug, as my feeble understanding allows, chemically binds the two standard drugs given to patients in my situation: Herceptin and Taxotere. Herceptin is a very targeted therapy that only finds and destroys Her2 positive cancer cells. Taxotere is a general chemotherapy drug, found to be quite effective when combined with the targeted Herceptin at treating my kind of cancer. However, being a more general drug, Taxotere interferes with healthy cells as well, which is why you lose your hair when being treated with it.

Apparently, when you bind these two drugs together, the result is an extremely potent, very targeted cancer killing machine. Being as targeted as it is, it is my understanding that I will not lose my hair if given this drug instead of the standard treatment. At this point, believe me, losing my hair is far from my greatest concern, but, hey, if I can keep it that's great news!

You may notice that I used the word "if" above. IF I get this new drug. Being that this is a clinical trial, there must be a control group. 50% of people enrolled in this study will receive the new drug and 50% will receive the standard treatment of Herceptin and Taxotere that I was scheduled to begin receiving tomorrow before the trial came up. Of course, it is my great hope that I will be computer randomized into the test group as opposed to the control. However, if I am placed in the control group and do not respond well to standard treatment, my doctor can switch me to the new drug since I am a trial participant. For this reason, we have come to view this trial as my golden ticket, as I will have access to this drug if I need it simply by having lucked into a slot.

To give you an idea of the scope of this and just how fortunate I am to be a part of this, here are some statistics for you: There are 120 people in this trial at 25 centers around the world. There are only 10 enrolled at UCLA, where there are 8 doctors and a full time study nurse following the 10 of us. Regardless of which group I end up in, my case will be scrutinized as if I were a bug under a microscope. In this case, scrutiny is a very good thing.

Just having a study nurse assigned to me is a blessing in and of itself. She is in constant contact with me, letting me know what is happening, what I need to do, and what my test results are looking like. Again, a very good thing.

So, pending my final acceptance in the study, which should come tomorrow, I will begin treatment next Monday the 14th. I truly can't wait to get this started. I am ready!

Friday, December 04, 2009


It has been a wild ride this week on our medical roller coaster.

As I type, I am in the waiting room of the surgical center where, in about an hour, they will insert a device called a portacath into my chest. This is a semi-permanent catheter that resides under the skin and allows for easier administration of the chemotherapy drugs.

On another note, I have been offered a spot in a clinical trial of a new, powerful drug for Her2 positive metastatic breast cancer. This is huge for me and exactly what my hope had been in choosing UCLA for my treatment.

It looks like they are ready for me, so I will post more on this later!

Tuesday, December 01, 2009

Happy Birthday, Natalie!

She loved her cake. She loved her gifts. She loved it when we sang Happy Birthday. How typical of this delightful, happy child who is so easy to please!

Natalie, I cannot believe it was only a year ago that we welcomed you into the world, as it now seems a lifetime ago. You were absolutely meant to be in our family and the world is a better place because you are here, beautiful daughter!

Natalie received the best gift of all from her doctor yesterday...official release from her hip abduction brace! Her hip angles, while still not perfectly proportional, are below threshold levels for treatment, so she is free at last. Her doctor will check her in a year, then in two years to be sure things are correcting on their own, which they often do from this point on. We are cautiously optimistic that her treatment is over and delighted that she is now free to begin walking and continue crawling unfettered.

Happy birthday, Natalie Lucia. Your name literally means "light of Christmas", but please know that for us you light up the rest of the year as well.