Advice You Will Hopefully Never Need But I Give You Anyway

Should you ever find yourself in the position of having PROMISED to take your 4 year old daughter and six year old son to Disneyland before end of summer, and this promise was made just days before you discovered that your entire life was about to be turned upside down medically, I have some advice for you.

Do it.

No matter how awful you feel. No matter how humbling it might be to be pushed through the park, bald in a wheelchair at age 39. No matter how difficult it was to even get out of bed for five minutes the next day. Because you know what? Tony and Bella have a picture of their mom, scarf and all, coming down Splash Mountain with them that may have cost me an awful lot physically but will pay off in spades in some photo album somewhere until the end of time.

While I'm giving advice on this matter, I cannot fail to caution you in a few areas. If you happen to be going through whole brain radiation at the time (and I certainly hope you will not be!), do not, under any circumstances, no matter how neat your little handicap pass that gets you right to the front of the 90 minute line may seem to be, get on Star Tours in 3D. This is simply too much for the newly radiated brain to take.

Furthermore, do not go anywhere near Toon Town, particularly that blasted Roger Rabbit Spinning Ride thing. It almost killed me.

Stick with things like It's A Small World, once thought by me to be the most boring, repetitive ride in the park. A little brain alteration makes it the most soothing place on the earth, let me tell you. Similarly, Pirates of the Caribbean is just long enough for a nice nap and just dark enough so the kids did not seem to notice, and even a little drool on the shirt passed for some pirate war splash. It was great!

Disneyland is really very good at accommodating guests with special needs and I really appreciated their support in fulfilling this promise to my children. There was little I could think of that I want to do less than go there yesterday and it will take me literally days to recover from it, but aside from the few pitfalls noted above, I am going to give it a two thumbs up recommendation. Especially since no one told me (and I was braced for it all day given my bloated belly) that, sorry, expectant ladies could not ride. I might have gone a tad postal at that but happily did not need to experience it.

Make every minute count with your kids, because there is no way you will ever regret that. It's my advice and I'm sticking with it!

Plugging Along

Just a note to let you know I am still here, taking things one day at a time.

I have been unbelievably blessed to live 18 months as a stage IV cancer patient with very few side effects from treatment, a good response, and maintenance of a normal life as long as I have been able to do this. So many are not as lucky as I have been thus far.

It was inevitable that I would eventually become a real cancer patient, with real effects from treatment, and that is where I am at least for now. As it turns out, when they shoot megawatts of radiation directly into your brain for days on end, things stop behaving perfectly in your body. But as long as those cancer cells are dying, we are good with this.

So for now, I am bald, remarkably bloated, totally fatigued, covered from head to toe with an itchy rash and slightly on this "sloooooow" side (which, is an oddly refreshing break from trying to be on top of things all the time), but am so hopeful that this shall pass into a successfully treated round of brain mets in a few months and that things will improve across the board.

In the meanwhile, what a blessing meals, help with kids, and people keeping me company through all of this has been. It's really, truly, not. that. bad. I can do this! And you are all helping me to do so with great cheer. God bless you all!

More Fun with Cancer

OK, folks, today promises to be a very challenging day for me on a number of levels so I giving you some specifics to share along with me today. Cheer me on, rally me home, 'cuz I know it will go better for me if you are all behind me!

First of all, much of my hair fell out last night. There is still enough there that I will have to do something about it today, either continue sloughing it off or just shave it already, because the sporadic pink (no, I'm not really sure why they are pink, they just have a pinkish tint to them) tufts are beyond disturbing.

You know, when you contemplate the actual losing of your hair, you don't really consider the actual moments of when it is physically dropping off your head. You think of how chic you might look if you happen to have an attractive scalp and how bold you may be in proclaiming bald as beautiful with scarves and shiny oil, but you don't really ever think of how each of those hundreds of thousands of individual hairs are going to come detached from your head and how that prolonged separation might affect you.

Once you notice the tufts dropping, do you help them along? Ignore them in hopes that they'll hang on a few more days? And how to do this while hoping your kids (and worse their teenage friends) don't get scarred for life?

Well, I have no answers, folks, but I will share what worked for me rather peacefully last night. I put on the Sound of Music, darkened the room and de-tuffted into a giant pile while I sang my way happily thorough "My Favorite Things", "Do Rey Me", and "I Am Sixteen Going on Seventeen". By the time we got to the puppet show, about 60% of my hair was in a pile, I looked a little like a crazed Jack Nicholson in the Cukoo's Nest with my hand madly running through my hair and an insane look in my eye, but it was painless for me and the kids didn't notice a thing except my cheerful and likely irritating singing, which they are totally used to anyway. So, probably not your most conventional method, but worked for me. By the time I had removed all I could for the evening I had my night cap in place and all was well.

As for the remaining tufts, I will see what to do. Shaving concerns me a little because of the radiation irritation on the scalp, but we shall see. I believe there is a specialist at the wig store at UCLA who can help me break through to the other side successfully.

On another note entirely, something has gone terrible wacky in my stomach over the last few days. For no clear reason, my abdomen has distended (and I mean really distended--I look like I am ready to give birth any minute to a full term baby which happened to grow in the span of about 40 hours). My children were astounded, thinking they were suddenly getting a sibling, no joke. This is not a normal side effect of the brain radiation or the medications I am on as far as the two doctors who have seen me in the last two days can ascertain, so I get to go to the hospital today for pokes and prods and scans to see what the heck is going on in there before I actually pop.

Could be fluid, could be blockage of some sort, we shall see. I am not in any pain, and it is a good thing I am so used to looking and feeling pregnant because I am just going with it. What else can one do? The waddle, once you've had it, never leaves you, it turns out!

Nonetheless, I can't imagine there is any really good or positive reason that this is happening, so I give this to you, along with my balding woes, to think good thoughts for me and say more prayers that this will all go well so I can get back to the business of cheerfully spending time with my family rather than doctors (who really can be great, but enough already, OK?).

Wish me luck, and I'll keep you posted.

Peace

I thought I would just take a moment to let you know how very peaceful I am, in the midst of all of this craziness. Maybe it will help those of you who are worried about me feel better too.

There is no doubt that this is exceedingly difficult on me physically right now, but as long as my peace is in tact, anything can be faced with complete joy. Even this.

The only component required for peace on earth, I've learned, is to do your very best to be right with God. I know many of you who read this blog are not particularly religious, but please indulge me on this occasion, as my faith is such an integral part of this journey for me and I cannot leave this part out any more than any of the medical particulars.

As a convert, it has taken a long time for me to become a fan of confession. I believe God is a loving and merciful God who did not create any of us to do anything other than love us. If we come to him contritely when we have gone astray, he is our father and will always run to us in love, ready to forgive us. I did not always believe this needed to happen inside of a confessional and indeed I believe it happens many times outside of one as well.

But I am now thoroughly convinced that Confession (Reconcilliation) is an actual, real Sacrament, filled with tangible graces that offers a real life encounter with Christ himself. There is no substitute for this, especially when you are at a place in your life where you are uncertain as how much time you may have to make up for things you have not done as well as you would have liked.

Last week I had the most cleansing confession I've ever had. It left me with a completely clean heart and total peace ever since. I wish I had done it years ago. For years now, I have gone fairly regularly to confession and got out all the usual goop that tends to bog us down. But this time, I went back to my first general confession and went over things again from my youth that I know and understand were completely and technically forgiven the first time I confessed them. But in recent months I would remember a few things that I didn't say at the time or wish that I had said them better. So, I decided what better time than the present to clean the slate.

I just said it all. Everything I have ever regretted doing in my life, all out there, all embarrassing, all so unimportant now that I gave it all up. I was not talking to the priest (though I was), I was talking to God himself and I left knowing that I am absolutely forgiven and I have done everything I can do to make things right. Wow, what a great feeling.

After the priest reminded me kindly to now really, truly let these things go, I have. I am ready for whatever comes and with such peace in my heart.

Don't worry, folks, I am not preparing for my imminent demise or anything, I am just getting my soul in order so I can focus on what is the really important part of living--moving forward without regret or fear.

I know this is a very personal thing to share with you all and I hope I have not been too frank. I just thought some of you might be happy to know that real peace exists, no matter what is going on in your life. God will provide it upon request, and you don't need to wait for a terminal illness to go get it!

And for those of you who think I'm totally nuts...I promise I'll get back to medical stuff and fun kid stories tomorrow. :-)

Going, But Not Yet Gone

Here it is: the interim short cut, intended to make the falling out of gobs of hair easier to take.

Most of the kids hate it, but I am surprised by how much I like it, considering I have never worn my hair short. It is certainly easy--but not as easy as it will be in a few days when I will no longer require hair products of any kind! (That is oddly refreshing to consider... and lets you know exactly how far from myself I actually am right now!)

Stay tuned for new photos in a few days...if I can bear to post them. :-) Hey, it's just hair, right?!

Perfect Day

One of the great gifts of a very serious illness is the instant ability it gives you to figure out what is important. This is the second time I am receiving this gift. The first time, at my diagnosis a year and a half ago, I held on to it for awhile, but as I got better and more comfortable with life as usual, I began to forget. I somehow don't think that will happen again.

Yesterday after my brain zap my family loaded itself up into our giant van, picked up some dear friends and their kids and drove to Santa Barbara where we met some more dear friends and their kids and spent the whole day on the beach. The grown ups chatted (well, truth be told, I mostly slept in the sand with my head on Bella's giant dolphin stuffed animal but that worked very well for me) and the kids played in the water and the waves with each other all day until they were completely spent.

Around 6pm the real dolphins came out and swam back and forth, right next to the beach. We were mesmerized by their grace and simplicity, and I was completely happy there with my family and friends. I'm so happy Jay was able to take this week off to be with me and help me adjust. What a blessing.

Not for Wimps

No sirree, this cancer in the brain business is not for the faint of heart.

This is just a quick post to let you know I am here and surviving, albeit very strangely for me. Please bear with the syntax errors and nonsensical statements that are sure to come, as I am struggling mightily to keep my wits about me. The best way to describe how I am feeling right now is as a very drunk person who is trying hard to be extra careful about how she moves and speaks so no one will know exactly how altered she is (not that I have any past experience with this from my college days or anything). I am in a mental fog that makes me feel slow, stupid and extremely frustrated and my physical dexterity has suffered greatly. Typing and texting (!) have become very difficult and I am very easily overwhelmed by too much information or decisions. For a multi-tasker like me this is very hard to take. I just know there is still a smart person here inside just waiting to break out again when all this is over.

The good news is plenty--I have now begun all treatments (Whole Brain Radiation, Tykerb--the medicine for HER2+ cancer that crosses the blood-brain barrier, Herceptin to manage the currently stable disease below the neck, and Decadron for the brain swelling that is causing most of my physical symptoms like numbness, headaches and balance issues). All the darts are now being thrown, so all I have to do now is survive the intense fatigue and stomach upset that comes with this cocktail. In four months we will scan the brain and see how we are doing. Until then, I just try to stay awake as much as I can and have quasi-intelligent conversations where I can.

So far, the Decadron is the worst, as it makes me extremely emotional and I am trying to not alarm people with massive mood swings. My oncologist warned me about this and told me the story of an really tough NFL player he recently treated for a brain tumor who required Decadron. After the medication he became emotional and weepy. He said the personality transformation he went through was positively stunning, but that ultimately he became a much nicer person. So maybe that will happen to me too!

For someone in my situation, my prognosis is a good as can be hoped for and there is a reasonable chance we can eliminate these lesions from my brain by the end of the year. Even if we can keep them stable or shrink them a little that is also good. So, I am praying fervently for the complete miracle, while filled with gratitude for my community that has surrounded me and my family. I will not be myself for awhile, so please bear with me and know that I am fighting the good fight and not losing heart or faith in any way.

I am beyond grateful for your support and prayers.

Finally, to those of you who have been so kind to send notes and other things, I want to thank you and let you know that I am not in a position to be able to personally respond to these things right now, but know I am receiving them and am truly grateful for your thoughtfulness.

The Good Kind of Drama

The best drama in my life comes from Bella.

After independently completing her shower, where she used copious amounts of soap that didn't quite get rinsed out of sensitive areas, she experienced an unpleasant burning that made her cry. I explained that all she needed to do was rinse and pee and then all would be well. Rather than following this time-tested and sure-to-succeed advice, she chose instead to crumple to the floor and wail, "Whhhhyyyyy did God doooooo this to me!?"

My barely suppressed giggles did not help her feel better. However, her reaction certainly lightened MY mood and reminded me that, no matter what we are dealing with in life, how we react to it defines how important it becomes to us.

Now, perhaps we have a little religious instruction to complete with her...

Gearing Up for Another Miracle--Help Needed!

After a few weeks of dizziness, balance issues, mild headaches and right side body numbness, my oncologist ordered a brain MRI "just to be sure". All these things could be explained, after all, as long term side effects of the T-DM1.

Unfortunately, the medication is not causing these things. Rather, it is the 15 or so roughly centimeter-sized metastatic tumors that were uncovered in my brain today. Yikes.

After a brief freak out, I sensibly made use of my anti-anxiety medication. Turns out that stuff really works for major anxiety (it was actually prescribed to me for chemo-related nausea and that is what I nearly always take it for, so I was delighted at its effect on my very raw nerves). 30 minutes later I had regained control of myself and was ready to speak with my doctor to figure out what this all means for me.

There is no doubt this is a very unfortunate and major setback for me. Nonetheless, the cancer is completely controlled in my liver and bones right now, and this is a very good thing. Because of this, they can focus on treating the brain aggressively right now without worrying about more than maintenance for the rest of my body because nothing there is on fire. Thank goodness.

So, the treatment plan? First of all, I need lots and lots of prayers. Please kick them up, especially through the intercession of Bishop Don Alvaro if you are Catholic (or even if you aren't but are so inclined). I do believe he obtained for me my first amazing healing of the liver which remains clean even now, so I'm sure he can do a heck of a job with the brain! Prayers are what give me peace and the strength to face this with all I've got, so I thank you for them, in whatever form you care to pray them, from the bottom of my heart. I am specifically asking for COMPLETE HEALING. Oh, and prayers for my family would be appreciated as well please, as this is very difficult for them.

I am officially off the TDM1 trial now, but so love that drug that did so well for me for so long. It did its job beautifully but never had a chance in the brain because of its molecular weight. So, we are switching to a new chemo tomorrow. This one is called Tykerb, is for Her2+ cancers, and does cross the blood brain barrier. Those suckers aren't going to know what hit them in a few days. This chemo is in pill form and does not require a port infusion. I am guaranteed to have tummy troubles with this one, but we'll take it one day at a time with that. I will also have Herceptin infused every three weeks to maintain the disease outside of the brain. That one is no big deal. Very similar to the drug I have been on all this time, just a little milder.

In an amazing, and I mean truly amazing, flurry of activity I began the radiation portion of the show today. Same day as diagnosis, can you believe it? It often takes weeks to get started but my wonderful oncologist made a phone call and pled my case with the rad onc and he saw me within 20 minutes and I was actually receiving treatment a few hours later. I did not know it was possible for radiation oncology to move that fast and am so grateful that I was already able to attack this rather than wait seemingly incessantly for treatment to begin.

I will be having 20 treatments of Whole Brain Radiation (WBR). Every business day for 4 weeks. I will have these in Mission Hills so at least I don't have to go all the way into UCLA. I cannot drive for now, so I will need lots of help from lots of people, most of whom don't even know yet that they will be called on. Sorry! But if I've learned anything from all of this, it is that I need help. Humbling, to be sure.

WBR is an intensely fatiguing experience I am told, and this will last for several months after treatment. I have been advised by my doctor to accept all the help I can with the children during this time, as I will have no desire to remove myself from the couch. Hmmm...we'll see how that works out, but a nice thought! I may have some short term cognitive processing problems, so please bear with me if I can't remember what I was talking about or have a hard time finding a word. I am likely to continue to be off balance for awhile as well. But all this should get better over time.

I will be losing my hair in about a week. It may grow back and it may not. The plan is to cut it super short this week so I have less gobbing off. Maybe I'll look like Halle Berry. Or maybe I won't.

I am now on a fairly powerful steroid called Decadron to control the swelling in my brain. This should significantly reduce my numbness and headaches in a few days. That's the good news. The bad news is that I am virtually guaranteed to become an emotional wreck overnight. You may want to avoid me for the next few months. (Unless you want to see what I look like bald, of course!)

I am truly sorry to report such dreary news and pray that all of you who read this will adopt the cheerful and positive attitude that I must maintain to see this through. Lurking under this sunny outlook, however, is enough fire in my belly to attack this, so don't worry that I am going to turn into a passive little flower. I am mad at this sneaky, rotten disease, and I want it out of my body. Now. All of it. ESPECIALLY out of my brain, for goodness sake.

Thank you for your prayers, your kind thoughts, your patience with me and the help that always comes when I need it. I am blessed in family and community and wouldn't trade that for anything.

Masked Bandits

We are on vacation! The boys are doing two weeks of football camp at Marin Catholic High School, so we are staying down the street with our former neighbors who, for some reason I cannot comprehend, continue to welcome our enormous, sloppy, hungry, noisy family into their home for long periods of time...and actually seem happy to see us.

It has been six years now since we lived here, and I am realizing on this visit how many fundamental things I have forgotten about the place. Little things, like which street to turn on, and which grocery store has which products, but also bigger things having to do with the flora and fauna.

For instance, yesterday it was very hot. Unlike in our desert home where heat hardly matters because everyone has air conditioning, the heat descends like a velvet theatre curtain on the surprised citizens of Marin. Unused to it and unprepared for it, lethargy sets in for the general populace and city streets are nearly empty. The boys reported after camp that a full third of the boys took of their pads, declared themselves ill and sat out the practice in the shade. Accustomed to playing in full pads in 100+ degree heat, Joey and Sam were unfazed and wondered what was wrong with everyone.

At any rate, when I got back to the house yesterday afternoon, I pulled into the driveway and rolled down the windows so the car wouldn't get too stuffy in this crazy heat. As I was wrapped up in dealing with my napping child, I did not think a thing of the bag of trash I had accumulated during the day and left in the car to be dealt with later.

Bright and early this morning I went out to the car and found, to my horror, that it had been ransacked! The bag of trash, which unfortunately contained the buns rejected by my little girls during our hot dog picnic in the park, had been ripped open and spread throughout the van. There were crumbs on every surface...which are many in a 12 seat church van, let me tell you.

But that wasn't ALL that was on every surface.

Apparently, the family of raccoons that invaded my van upset their delicate digestive systems with their hot dog bun splurge and left copious evidence to support this theory all over the car. They tagged the seats, nearly all of them. They got the carpet. They even got three of the four sweatshirts the kids had carelessly discarded on the floor.

What is a mom to do with a van full of ripped up trash and raccoon poop at 7am? Get over to the do-it-yourself carwash lickety split, that's what! So there I was, armed with carpet cleaner, Febreze and disinfecting wipes, dumping tokens into the giant vacuum machine before the sun was fully risen, scrubbing with all my might. I could not take the kids to camp in a poop-mobile. Not even I am THAT casual.

So, the good news is that my van is really, really clean now and smells like lavender. The washing machine ran for a good portion of the day on the sanitary cycle so I have lots of clean sweatshirts and socks, too. You see, we don't have to worry about things like raccoons (or even most bugs) in the desert, so I have nearly forgotten completely that they exist in other parts of the world more hospitable to lifeforms of all kinds.

Makes me appreciate the desert.

Happy News in the Happiest Place on Earth

I just returned from two days at Disneyland with Sam. We had such a nice time, just the two of us.

Sam is a very low-maintenance kid. He is not a complainer, is very independent, just sort of does his own thing, nearly always happy. As a result, he sometimes gets less attention than the other kids who are, well, just louder and more insistent. We are aware of this and try to reward him for his easy-going nature whenever we can.

When I realized (without him saying a word about it) that the other three older kids all were going someplace fun this summer, Jay and I decided that Sam should have some fun too. I woke him up early on Tuesday with, "Hey, want to go to Disneyland?" I wish I had recorded how his eyes flew open and mouth curled into his handsome Sammy smile, because it was priceless.

Off we went to the crowds and had a great time just hanging out together. Even the lines were a pleasure with Sam as he never complained or asked how much longer. He is a good example of a cheerful person, one I should do a better job of emulating!

At any rate, on the morning of our second day, I got an email from my study nurse (have I mentioned how much I love her? She is so great about giving me information as soon as it comes up...and when you are waiting for test or scan results, every minute seems like an hour). She sent me a copy of my biopsy report that showed that both spots in the right breast are benign. What an unexpected pleasure that was to read!

So what did we do? Had a GIANT ice cream sundae to celebrate, of course! Then we went on California Screamin'. Love that ride.

Incidentally, I still have to have one of the lumps removed for pathological reasons I don't fully understand, but that does not lessen my delight in the results. I am greatly pleased that they are being so cautious with me given my Stage IV diagnosis. Makes me feel like I truly might be "salvageable" as my oncologist said. It's a good place to be.

Four out of Four Doctors Agree

It's biopsy time again. Luckily, it is soon (Friday) and I will have results early next week, so I don't have long to wait.

I actually had a very nice day at UCLA today in the care of the folks at the Revlon Breast Cancer center and the Iris Cantor Breast Imaging Center which, surprisingly, I had never been to before today. I have a ton of confidence in my surgeon and find her very presence reassuring. Her wonderful staff got me upstairs for initial imaging within a half hour (I am used to waiting weeks in between referrals and procedures).

I had a similarly great experience with the fellow who performed my ultrasound. She was exceptionally thorough, knew my history completely, and eventually corroborated her findings with the radiologist who read the MRI that began all of this last month. They decided together what to do while I waited. (Incidentally, for you Kaiser patients, she told me that she would be heading to the Kaiser system as soon as her fellowship was over, so you will soon be getting a great new radiologist!)

Not once today did I feel like a Stage IV patient. I felt like any other young(ish) woman who might find a suspicious lump in her breast that could be successfully treated. Everyone I came in contact with today was interested in being aggressive with this latest finding and assumed that it could be completely eradicated, regardless of my prior history. I LOVED that. They even took new baseline mammogram, which I was not scheduled for, so they would know the character of anything new that came up over time. I truly appreciated that long-term view.

I am in the very unusual position of not really caring all that much whether these lumps are benign or malignant. I know that sounds crazy, but if they are malignant, they are so early that they can be treated easily. Of course, I'd rather not have the lumpectomy and radiation that are sure to follow a malignant diagnosis, but in the grand scheme of things I'm certainly not afraid of the diagnosis, as I was the first time. It won't significantly change my life--that has already happened.

I read a beautiful account of this profound change in a book I'm reading called The Emperor of All Maladies by Siddhartha Mukherjee. I hope you will indulge me as I quote it here, as it so perfectly captures the unwelcome portion of a patient's transformation during treatment for cancer:

The Italian memoirist Primo Levi, who survived a concentration camp and then navigated his way through a blasted Germany to his native Turin, often remarked that among the most fatal qualities of the camp was its ability to erase the idea of a life outside and beyond itself. A person's past and his present were annihilated as a matter of course--to be in the camps was to abnegate history, identity and personality--but it was the erasure of the future that was the most chilling. With that annihilation, Levi wrote, came a moral and spiritual death that perpetuated the status quo of imprisonment. If no life existed beyond the camp, then the distorted logic by which the camp operated became life as usual.

Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living. The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away. Every last morsel of energy is spent tending the disease. "How to overcome him became my obession," the journalist Max Lerner wrote of the lymphona in his spleen. "If it was to be a combat then I had to engage it with everything I had--knowledge and guile, ways covert as well as overt."

This passage could not be more true. I wish I was not so focused on my own health, but no matter how hard I try to drag myself away from it, I cannot escape. Thanks to my family and friends, I do think of other things(like who has what practice after school and who has to remember to bring a share to school this week) but some days it is nearly impossible for me to not dwell on this battle I am constantly engaged in. It is often draining, but I am glad to know I am not unusual in this and that, indeed, it is par for the course if I am truly going to put up a decent fight.

Anyone who has read this blog for long knows that I often speak about the positive things that this cancer diagnosis has brought, for there certainly are many. I honestly believe that I am a better person for it, overall, and don't wish the entire experience away (though it could happily end anytime now). But that doesn't mean that it isn't difficult at times.

Like, say, during a biopsy week. Wish me luck!

Thank Goodness for Children

At this morning's mass, during the Eucharistic prayer, Bella is barely enduring it all, when suddenly, she perks up, whips her head around to me and asks with wonder, "Mama, did the priest just say Smurfs?!"

It was heartbreaking to have to tell her no, but so delightful to have been asked. Can I live in her world for awhile?

At Least I Got 24 Hours

Of peace, that is. To enjoy the clean scan results, and the prospect of nine weeks without drama. However, I am getting the clear message that long-term peace is not to be mine, at least not yet.

I saw my oncologist yesterday, ready to rejoice with him in my stunning scan results. Instead, he expressed concern--to my complete surprise--about the developments in the right breast. Apparently, he did not like what was seen on PET combined with MRI, even though I thought it was fine (I guess I should have gone to medical school!). So, he is sending me off to the surgeon for a biopsy.

This is not something I would have chosen. In fact, when he asked me if I wanted a biopsy, I actually snorted and laughed as I shouted, "NO!". But apparently this was a rhetorical question. Though I would have preferred to ride it out the nine weeks and see, he was pretty insistent that I have this done, so I will do it.

But it's not all bad...he let me know that it was because he doesn't think I'm going to die of the original cancer any time soon that he is choosing to be aggressive with this, and that is nice. Too many Stage IV patients are essentially written off by their doctors and not treated because they see no point. In contrast, I was told yesterday I was "salvagable" (who knew I could ever be so happy to be described by that particular word?) and therefore deserved the full work up. Doesn't mean it's malignant.

But it does mean I'm going for another whirl on the roller coaster when I really, really wanted to get off. Hang on, here we gooooooooooo! (I hope I don't throw up.)

Doing the Happy Dance

Scans came in today, and they are completely clear of progressing cancer!

The new spots in the right breast are seen but not metabolic, which indicates they are benign. The T9 vertebrae is healed as a result of the stereotactic radiation (which I am thrilled about but did not expect since it still hurts quite a bit). The rib lesion is still mildly active but much reduced in intensity from the last scan 5 weeks ago.

My liver is clear. Totally clear of anything abnormal at all. This is the most calming news of all, as the strange abdominal pressure and appetite changes I have been experiencing continue. But since two scans now have shown nothing unusual, I am ready to peacefully accept these symptoms are due to something else and are nothing to worry about. I really needed that peace of mind and am grateful to my doctor for ordering this extra scan for me so I could receive this great gift.

What a roller coaster of stress and emotion and worry this has all been these past few months. I am so, so happy for this reprieve and fully intend to enjoy these nine weeks until my next regularly scheduled scans (when I am sure to begin to worry all over again...because I am all too human).

Thanks for all your support and prayers during these past few months as I have dealt with my first real bump in the road since initial diagnosis. I am sure it will not be the last, but in the meantime I am going to appreciate every moment of this period of, as the radiologist so beautifully reported it, "decreasing disease".

Can Someone Explain How This Happened?

I woke up on Friday morning, May 20, to find a teenager in the bed my little boy used to sleep in.

This man-child is huge, with feet the size of scuba flippers, and--gulp--hairy legs! He is taller than me, and nearly as tall as his father. He has a smile the size of Texas with a heart even bigger than that. He is lean and muscular, hysterically funny and witty as all get out. He makes me laugh every day and continually delights me with his character, which I could not be prouder of.

I am so happy that this newly minted teenager still likes to hang out with me and his dad. He talks to us about all sorts of things and delights in telling us stories and dumb jokes. He wants us to see the things he thinks are funny and tell us about things that concern him. I hope and pray that he does not change in this regard.

He is a wonderful--though requisitely obnoxious and torturous--big brother to his six younger siblings, and sets a good example in honesty and integrity. He has chosen quality friends and is loyal and objective.

I can't believe that my little boy is officially a teenager. How did this happen? I blinked and he grew up. Now comes the fun part!

And Now for Some Good News

Yesterday we had Joey's tri-annual IEP review. Every three years the school evaluates the resource children to see how they are doing. They talk to all their teachers, test them to see if they need more or less services, and then make a recommendation to the parents.

Joey's review could not have been more positive. His teachers unilaterally called him hard working, intelligent and kind. All have seen progress this year in his physical writing skills (except spelling which remains atrocious). He is making As and Bs with no resource help whatsoever, so he has been moved to a "monitor" status, which means he is out of resource advisory and will check in with the resource teacher now only periodically or if he needs something.

We are so proud. Just a few years ago we were consumed with worry about our child who was not progressing in school. We would have done anything, paid anything, ransomed anything to hear the news we got yesterday. As a complete bonus, he has turned out to be quite the track star, solidly winning three sprints at his last meet. All this has combined to give him the confidence he was lacking for so long. We are literally watching him blossom and realize the potential we always knew he had.

Happy, happy, happy.

The Totally Backwards MRI

Well, the long-awaited MRI results came in today. They were...interesting.

As you may recall from my last post, I have a large mass that has recently developed in my left breast in same location as the original cancer. Even though it did not show up on my recent PET/CT, I was insistent that something was wrong, hence the MRI which is clearer imaging for the breast.

When the MRI was done, I showed the tech the mass and asked afterward that she check to be sure she saw it. She did see it and was able to show me on the screen the area that corresponded the the mass we could see and feel. I left happy in the knowledge that it had indeed been captured and would be properly analyzed.

So, the good news is that the mass is nothing to worry about (and I now believe this since two different imaging systems agree). The radiologist referred to it as likely post surgical changes (interesting, since I never had surgery) but classified it on the BI-RAD scale (1 being nothing seen at all and 5 being without a doubt malignant) as a Category 2, benign. I am now officially ready to put this to rest.

However.

There are two new suspicious lumps in the right breast. I cannot feel them, and they are still quite small, about 6 mm each. These fall on the BI-RAD scale at category 4B, which means "suspicious abnormality, biopsy recommended". I immediately got out my MRI from my original diagnosis and was a bit dismayed to learn that my original cancer was classified as a Category 4C.

Why am I concerned, you may ask, since I already know I have cancer and it has already spread through my body? Because breast cancer, as far as I understand, does not spread to the other breast. It spreads out of the breast into bones, lungs, liver and brain, but does not infiltrate the healthy breast. Therefore, if these lumps are indeed malignant, they will indicate a new primary cancer.

It would be strange for me to have a second primary since I didn't have any risk factors for the first one, but I have been on a trial drug for quite some time and have received more radiation than the average person, so who knows? I suppose anything is possible. A new primary could have the same biology or completely different biology as the first one. Sometimes, even different lumps in the same breast have different pathologies. That means, if these new lumps are malignant and are not HER2 positive, they would not respond at all to the drug I am currently on. However, since these are still so small, I suspect they can likely be easily dealt with through a lumpectomy. But what do I know.

I am going to wait until I see the NP on Thursday before I get too excited about all of this, but it is definitely a setback for me mentally. There is a decent chance it may not be malignant at all. My doctor may not even recommend a biopsy at this point, preferring to wait for the next PET (in fact, I am guessing that will be his strategy). But at the end of the day, it is another thing to worry about, more tests on the horizon, more waiting and more anxiety. I would be lying if I said this was all easy to take.

Nonetheless, I am choosing to focus for now on the fact that the big mass seems to be nothing to worry about. Let's take our victories where we find them, shall we?

Now, I believe I have some children to tend to!

A Very Belated Health Update

My apologies for being silent for so long...while there has been no shortage of things going on over here, I have experienced a blog-deadly combination of intense fatigue and intermittent internet problems. But I am here and all is well!

For those of you who want a detailed update on my condition, read on. For those who don't, you can stop right here secure in the knowledge that I am still alive and kicking, and happily so.

I completed two weeks of daily radiation to my rib last week, as well as a single high-dose zap to my spine. I stayed with a friend in Glendale during my treatment so I wouldn't have to drive back and forth, and that was a nice break for me. I took the two little girls with me as I could not bear to leave them. This made for a heavier load on my friend who watched them while I was treated, but eased my conscience greatly about leaving my family unattended for so long. I am truly grateful for her help and for nurturing my spirit as well as my body while I was in her care.

The daily radiation, while certainly inconvenient, was really not that bad. Each appointment only took about 15 minutes and didn't hurt at all. I have a little skin discoloration where the beam passed through my skin but it doesn't bother me. The same cannot be said of the stereotactic dose to my spine. That single shot of radiation sent me into a spiral for no fewer than three days and caused me discomfort in my kidneys and on my abdominal skin. This, happily, passed in a few days and all is now well.

With some notable exceptions.

The pain in my spine and rib, which by all accounts should be gone now, has not abated. In addition, a large and very suspicious mass has developed in my breast exactly where the original cancer was, and I have a strange tenderness in my abdomen. When I showed these things to my doctor, he immediately ordered scans. We all expected them to come back showing that the cancer had continued its march in my breast and liver, and my doctor assured me that I should not worry if that was the case, that there were many tricks left in his arsenal. Needless to say, this time of waiting and wondering was very stressful.

The scans came back last week showing nothing. Absolutely nothing. Instead of being happy about this, as any normal person would be, I was incredulous. I went back to my doctor and asked that the NP do another physical exam to assure me that I am not imagining the mass in my breast. She concurred with my findings completely and could not understand why it didn't show up in the PET/CT. She ordered an MRI to see if we can get some more information on what is going on. That will be on Tuesday of this week.

So, the waiting and wondering has not ceased for me, even after all these weeks, but I am more peaceful with the state of things. As far as I can tell, there has never been a large active cancer that has not shown up on a PET, since cancer is by definition metabolic and the PET measures metabolic activity. Therefore, I have concluded that it has to be something else and I am wasting these precious nine weeks of happy scan results with needless worry. I tell you, the emotional roller coaster of cancer has been, for me, far worse than the physical insult. It is very difficult at times to get my head around living and dying, living and dying, and preparing for both simultaneously. But I am still a basically happy and peaceful person. That's the faith and prayers part!

One more minor thing to mention, if I'm coming clean. For the past nine weeks I have been receiving iron infusions to bolster my sagging hemoglobin. This has done wonders for my energy level and I have begun to feel more like a human being as my numbers have crept up. I am still below normal in my iron saturation, about half of what I should be, but double from where I was, so it is definitely working.

Just after my iron infusion on Thursday I nearly passed out. I had an intense bout of nausea and dizziness that almost flattened me. I alarmed the nurses, who called for my doctor (who was there in a flash and very reassuring) and kept me for awhile, giving me Benadryl and waiting while my blood pressure returned to normal. I have no explanation for this, and my doctor has called it a bad reaction to the iron, which happens occasionally, but rarely after so many infusions. Needless to say, he has discontinued the iron so I hope that my blood can find its own way from here on out. Just another piece of the puzzle. Truly, the entire episode was nothing short of humiliating for me, as I do not relish losing control over myself for even a moment. Especially in an infusion room filled with other patients.

So, there you have it. The up-to-the-minute update on my ever dramatic health situation. I am very fortunate to have children to distract me from all of this, because otherwise I might be in danger of becoming totally self-absorbed in my own health. But as it is, each day remains relatively normal for me, as I am pulled along with the tide of my family life. Thanks be to God.

Congratulations, Julia!

Julia made her First Holy Communion yesterday. She was a vision in her dress, and the day was a joy for us all. For the first time, we made it through a first communion mass without having to evacuate small children to the crying room, so I'd say it was an unqualified success!

As this day fell on the weekend between two weeks of daily radiation treatment that have me spending more time with doctors than with my family, I was simply grateful that we were all together.

Julia, may you never stray from the Holy Eucharist, which will always be your source of grace and strength. Congratulations!