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.