An Open Letter to Carnival Cruise Lines

Please accept my heartfelt apologies for taking so long to blog after returning from our cruise more than a week ago. I unfortunately became quite ill after returning home (which I have now learned is not that uncommon for people following cruises, much less those who may be immunosuppressed as I have been from the steroids). I feel as though I have contracted some sort of sleeping sickness where all I do is sleep. Not bad in theory, but nonetheless, I would prefer to be awake for at least a few hours a day to keep a handle on what is going on around me.

I had a mini adventure yesterday to the urgent care as well when I woke up at 2am to discover I could not get a deep breath without alarming pain in my right lung and rib cage. An xray discovered no obvious cracks or splits, but I still cannot take in a deep breath and am unsure where this may have come from. Just one more thing to alarm those who love me with--sorry guys!

At any rate, now that this apology and explanation is behind me, I come to the real reason for this post: a letter to Carnival Cruise Lines.

* * * * *

Dear Carnival Cruise Lines,

We five old biddies (well, OK, four old biddies and Briana who really is still too young to counted as a biddie) had a great time on our cruise to Ensenada. We loved the boat, which was beautiful, we enjoyed the food (for the most part), we loved the little nooks and crannies all over the boat where we would find a quiet place to read. I can't remember ever laughing to hard in my life. My sides ached at the end of each day from laughing and as far as I can recall there is no better medicine than from-the-bottom-of-your-belly laughter like that. Thank you for a great birthday celebration.

I was particularly impressed by how well five adult women fit into the smallest cabin you have. I was convinced that we were going to only barely tolerate the accomodations but they were better than adequate. Nicely done!

Now, on to some other things...

From the minute we booked this cruise, months and months ago, I had been pestering your guest services department about whether or not there would be a priest on board to give mass on Sunday. We were to be at sea on Sunday and I have never, ever missed a Sunday mass since becoming Catholic in 1999. Plus, I was about to cause three fellow Catholics to miss their Sunday mass as well since I did not check out the mass situation before I booked. (I won't make THAT mistake again!). At any rate, it became evident as I checked with guest services one more time at departure that not only was there no priest on board, but there was also no generic religious service at all. Now, I have no idea how many people are on board a ship like this, but I was pretty sad that, given all the debauchery and gambling and half-dressed people running around that there couldn't be at least a small concession to those of us who would really really like to remember God on Sundays, because I know there must be more than just us five.

After praying for months that God would send a priest on board for us, my prayer was answered in a most unusual way. Hurricane Hillary appeared south of us on Saturday forcing cruise ships to juggle their positions and change their itineraries. Suddenly, we found ourselves at sea on Saturday and in port in Ensenada on Sunday. Yippee! We ended up going to mass at the Cathedral of Ensenada on Sunday and had a beautiful mass. I couldn't have planned that if I had tried! After two days on the boat, I was so relieved that I had nothing to do with getting a priest on that boat because the dress allowed was so offensive to me that I couldn't imagine a priest trying to avert his eyes from scantily clad person after scantily clad person. I was thrilled that my husband and children were not on that boat either, as it is not right for anyone to have to act like they aren't noticing that person in front of them in the buffet line who is wearing large patterned lace pants and NOTHING else. I had to move place in line. Carnival, I know you are the "fun ship" but please consider a basic dress code because everywhere I looked I was horrified. Do these young people (and worse, some of the older people) have no self-respect? I was embarrassed for them and had to resist the urge to run after people putting towels on them. Yikes! Our society has become such a "reality TV" culture where everyone is basically shouting "look at me!". Look at my clothes, or lack thereof, look at my tattoos and body piercings, look at how clever and funny I am when I drink too much, look at my put my hands all over this person's body who I just met tonight. Shudder.

On another note entirely, I would like to mention that your wheelchair accessibility was not stellar. The ramp lips were very difficult to navigate and many a time I was nearly dumped right out of my chair as we charged them to get me over the doorway humps. Just a thought.

So, Carnival, overall we had a great time and hope next time we sail with you we will do so under a classier dress code and improved wheelchair access. Also, we loved the comedian--so nice to have a family-friendly option.

Most Sincerely,

Suzanne Di Silvestri

It's A Good News/Bad News Kind of Thing

The good news: my hair is making a real effort to grow back. Besides the wispy hairs busy sprouting here and there, it is rapidly growing itself a serious patch of real hair all in one place.

The bad news: it seems to think that the year is 1985 and is distinctly and determinedly growing itself from the base of the skull into a...mullet.

Seriously. Who could make this stuff up?

And what, pray tell, am I to do with this rebel hair growth? Allow and encourage it until I look like Billy Ray Cyrus, or take charge of that hair and let it know in no uncertain terms that until it decides to favor the entire head, it is simply not going to be allowed to continue. I must admit, I am unsure.

Ah, well. Just thought I'd share another item for you to file in your "things you never knew cancer patients had to think about" folder.

Rehabilitation

I have decided it is time to start a slow but steady rehabilitation program here. Might work, might not, can't hurt, and can only help me feel like I am doing something positive to help my recovery along here.

Guess who figured out yesterday that she has a swimming pool in the back yard complete with a "therapeutic" spa built large enough for multiple children? That's right, me! I don't know why it did not occur to me before that water exercise is the absolute best kind for weak legs and weight issues. Probably because every time I get in the pool the kids mob me and it becomes a giant play fest, so I never associated the spa with anything peaceful and therapeutic at all. Well, that changed yesterday as I physically restrained the children in the house (with the help of two or three adults) and spent 30 minutes or so in toasty waters working those atrophied arms and legs. It felt great.

Similarly, as I prepare for Jennifer to leave, after two months of having her handle virtually everything for me, I spent time with my own calendar yesterday. That was way scarier. It took me a half hour, literally to plan two days of who needed to be where and who was taking them. I took copious notes, drove everyone around me crazy. I completely exhausted myself. But I did it. My calendar masters checked my work and I passed. But it was painful! Any rehabilitation program of mine, however, must include a mental aspect, so this is probably the most practical place to begin.

After, as I was floating in my "therapeutic spa" after my self designed physical therapy looking around at my yard and house, I was struck by how different everything looked since the last time I had been in the spa. I truly only get in the pool once or maybe twice a year, even though I like to swim, because I am always too busy and I really do think of it as just recreational for the kids. The last time I was in the spa I remember looking at our back porch and seeing how it needed paint, how the windows needed cleaning, how the potted plants weren't thriving, how I needed to change this or that about the house.

Yesterday, as I looked around I thought about how nice it was that we had such a large porch and sitting area, not to mention a pool for the children (and now me!) to use, I thought about how much fun we had picking out the now peeling (but potentially now "shabby chic" charming) planter jars when we were in Mexico. I thought about how nice the and green the grass looked and how great it was that I had had the energy the year before to switch the sprinklers out to water efficient ones that gave us this green lawn at a price we could afford! (I chose not to look at the vegetable garden at all, as a person can only come so far so fast.) I couldn't believe how critical I had been of the beautiful things around me only a few months earlier.

Clearly, rehabilitation is happening for me on three levels: physical, mental and attitudinal (is that a word?!). Three is a magic number, didn't you know?

40 Years Old!

Wow. 40. It used to seem so old.

As it turns out, though, WHOOO HOOOO, I made it to 40, I made it to 40! Middle age? I don't THINK so! For me it is NOW, it is days with my family and friends. It is the gift of time which is ultimately our greatest treasure. May I spend every minute of mine wisely (and may you too, for that matter!).

Practically speaking , this year it was me getting my very favorite childhood cake and spaghetti casserole thanks to my dear friend who went to great lengths to make this happen for me (the cake traveled from our hometown of Carpinteria where several of her family members got involved, picked up and drove the cake from "our" bakery, down the coast and into the desert just for me). I felt pretty special about that. This is my same friend of 30+ years who has been here for nearly two months from Texas to take care of me. I will be lost when she leaves but so very blessed to have had this time with her. Who gets two months uninterrupted time as an adult with their friend like that? Great birthday gift--life gift!--for sure.

After three (three!) good days in a row physically, I had a bit of a slow day yesterday on my actual birthday. I was unable to go to lunch as planned or actually leave the house at all, but it didn't matter at all, as everyone was flexible, came to me and let me snooze on the couch as much as I needed to (which turned out to be most of the day). The kids brought me beautiful gifts that they had made or saved their money for and were so proud of, the best gifts ever. Overall, it was a great day, no matter how I felt.

Finally, and most indulgently, I have a brief cruise to look forward to next weekend to culminate this celebration of 40 years. I am going along with four friends for three nights on Carnival to Ensenada. Now, we booked this probably 9 months ago when things looked quite different for me physically. I may not be able to get off the boat in port and will be using a wheelchair onboard, but at this point it looks as if I will make it on the boat in the first place and that in itself is a victory for me right now. Park me on the Lido deck with a good book and an ocean breeze and I will be a very happy cruiser.

Thank you for all the birthday wishes. I never could have imagined how happy I would be to turn 40. Badge of honor, let me tell you.

A Dose of Reality (Just A Little One)

It has been gently suggested to me that, although it is nice to be positive and upbeat about all that I am going through, that perhaps I have given at times an overly rosy picture of, or at very least glossed over the physical aspects of my current cancer treatments. Perhaps, this well meaning person suggested, I should let on a little more about what I am dealing with so as to "keep it real".

I have given this quite a bit of thought over the past few days. I have concluded that I write mostly positively because overwhelmingly that is how I feel spiritually, and how I feel spiritually guides all other aspects of my life. Further, I try very hard to not complain because unless complaining about something specific can actually cause the situation to change, I don't see that it does much besides bring me down. Having cancer is not fun, it is not something I chose, there is nothing I can do to change it, and all I can do is hope and pray for the best. Complaining about any aspect of this will add nothing positive to the equation.

Considering all this further, I began to think about what I want to read when I go to someone's blog that I care about. I want to know how they are really doing, truly doing, and I am also there seeking specific information about how I might be able to help them or, in the case of the cancer blog world, I might be looking for specific information about how they handled a side effect or how a particular medication affected them. I have definitely not given enough detail about any of the particulars of my treatment to be of any help to anyone who is searching for that kind of information, that has been invaluable to me from other bloggers who let me know if a particular symptom I am experiencing is normal. There are other forums for that, more medical in nature, but I have also benefited much from us regular bloggers just being real.

Given this now rambling thought process (and most of mine are now, sadly) I thought I would share a bit more about my physical symptoms since going through whole brain radiation. Let's be clear, though, that this is more of a reference list than anything else. You may not be interested (actually I would be surprised if you were) but I have concluded that I do owe all those who have fought this fight before me and those who will fight it after me an accurate assessment of what it feels like to go through this, at least for me. So here we go...

This is, by far, the most difficult thing I have ever faced physically and mentally in my life. I had no idea how hard, even when my doctor told me how hard it would be, that it would be this hard. The fatigue and weakness I have been experiencing is so intense that it is easy for me to understand why people, in different situations than I am in of course, say they would rather just skip treatment and let nature take its course. That was something I could never have understood before but now I get it. Don't worry, I am nowhere close to embracing that point of view for myself, I just simply understand it. I have way too much to live for!

Most of my physical issues, it seems, are tied to the nasty steroids I have to take to keep my brain from swelling. Long term steroid use is just plain unpleasant. We are trying to wean down the steroids but it is a process, particularly since I have several symptoms that tell us the brain is not done swelling. If the brain swells too much it could cause the kind of damage that would render pointless the types of complaints I have about the steroids themselves, so I am trying to keep that in perspective. But it is difficult to do, some days more than others. They won't be able to scan the brain for another month or so, so we are just guessing based on the symptoms I'm having as to whether a wean down is a good idea or not. Being more of a precision gal myself, this is frustrating.

If you have not seen me recently, you would be completely shocked at the change in my physical appearance. I look like a chipmunk. I'm not kidding. My face is round as the moon with multiple chins for decoration. I have gained 25 pounds in 6 weeks, mostly in my torso. That is the most uncomfortable part for me because I have little that fits my new body shape, and because it happened so fast that my skin is stretched so tight I am afraid I will tear myself if I turn too fast. It is as if I suddenly have to carry a giant bag of dog food strapped to me everywhere I go. This makes stairs particularly difficult.

I have become quite inactive due to the fatigue which is at great odds with the weight gain as you might imagine. My knees and legs, in particular, have become so weak that at times they do not hold me up at all and I need to just wait for awhile until I can get up. There is a vicious cycle here that must be broken, but since the steroid I am on mimics blood sugar issues I cannot stop eating enough to make a meaningful difference in weight loss until the dose goes down, as I begin to shake so badly that I cannot hold a cup without spilling or dropping it. That kind of shaking is so disconcerting and awful and only food stops it, so what do you do? You eat because it is scary to shake like your blood sugar is in the 60s when it really isn't.

The oral medication I am taking for my brain tumors (which, by the way, seems to have brought my tumor markers to an all time low of 16, so we are cheering that good news) likes to decorate the skin. I have had two different rashes from that, one itchy and thankfully mostly gone now, and another resembling infected spider bites on my arms and legs. Attractive? No. But not painful or itchy, so I am glad about that. In addition, it has given me the most extensive and long lasting case of acne I have ever enjoyed and that's saying a lot from me who never really outgrew my pimples in the first place. But, hey, at least no wrinkles at age 40 thanks to the chipmunk face, so that's something!

Luckily, vanity is not ruling my life right now. Rather, the drive to live to see my children grow up trumps what I look like, but I would be lying if I said it was easy to watch myself turn into Quasimodo in the span of a few weeks.

The entire right side of my body is largely numb, particularly my hand (luckily I am left handed) which has made for some difficulties in things like fixing the girls hair, tying bows, etc. It is very disconcerting but the doctors seem to think it will resolve as the swelling goes down. I hope so.

I have had some unusual infections, as the the immune compromised seem to get, such as oral thrush (common for babies, not adults), UTIs, sinus infection, eye infections, etc. Nothing too big, but all together one thing after another. Currently all gone, happily, but I have to be very careful with germs and this is rather difficult in our house as you might imagine.

Today I could not get into my big red van to go to church. I had to have two people push me in because my legs have become so weak that I cannot climb up. I have learned to be careful to not end up flat on my back as I end up doing I need help balancing in getting from one place to another and really can only do or go one place in an entire day. It takes all day to prepare to get me out of the house and to that one thing, whatever it might be, so that takes some choosing and planning. I so miss being able to drive myself places and just hop out to get the one thing I need at the store. I have lost my independence completely and that is sometimes the hardest thing of all.

Mentally, I am sometimes clear and sometimes I cannot string three words together. I wish I knew what made the difference from day to day but instead I wait for a good day and then rush to do the things I have been waiting for clarity on. On a bad stay I tend to scare those around me with my non-sensical statements and occasional slurring, although usually I know what I am trying to say, I just can't spit it out. I also get weepy and more than a little compulsive and repetitive on those days. Some days all I can do is sleep and some I cannot sleep at all. It tends to confuse the body.

I always try to do too much immediately when I am feeling well because I am so desperate to be useful to my family and to take the burden off the people who are doing everything for me right now. I am trying to be better about this but I get so excited that I get downright hostile with whoever tries to step between me and whatever I am wanting to attempt to accomplish. Something else to work on. Sigh.

Another difficult part for me is the confusion that my once fairly tightly-run calendar is causing me. I can no longer wake up and know what is going on for my family on a particular day, and it takes me quite some time, if ever, to figure out who needs to be where with who when and with what equipment and snacks. Now, I acknowledge that this is a difficult thing to do for a mother of seven WITHOUT brain issues, but nonetheless it is another sign of my no longer normal life that figures into the equation. I am so very blessed to have my friends who have made this a non issue for me, as people arrive to pick up and drop off and they seem to be getting everywhere they need to be. How wonderful.

Last, but certainly not least for me, is that I am no longer singing at church. As many of you long-time readers of this blog know, cantoring and singing at my church was, outside of my family and friends, my greatest joy. Yesterday the choir resumed singing after summer break and for the first time in 6 years I was not in the choir loft. (I absolutely loved hearing them from the pews and cried happily through my favorite musical parts of the mass, but I couldn't help mourn not participating). I suppose I am like an athlete out for the season...I have new sympathy for those watching from the sidelines. At this point, I am really unable to sing not just because I can't stand up for long or get up the choir loft stairs easily, but even more because my voice isn't working right. The radiation affected my ears, throat and mouth (gums, tongue) and I don't have any breath control (possibly due to the extra weight, not sure). I am going to start singing again every day to try to exercise all of this, as I was so inspired by the choir yesterday, but I was also reminded of how much I miss this part of my life. Hoping for a turn around here.

So, folks, there you have it. A more "realistic" and thorough accounting of my situation. I hope this did not come off as a giant complaint because, believe me, I am truly not complaining. Every day I am here with my family, every day I can get myself out of bed, every day I can show up for SOMETHING is a good day. Yes, I really, really wish I never got cancer. I wish cancer did not exist in this world. But seeing as it does, and I did and I do...I've got my faith and my family and my community and that's all that matters at the end of the day anyway. There's nothing sugar coated about that, I promise.

And, hey, now that you know all the things that are wrong with me, I can now easily let you know as they go away one by one and you will know what I'm talking about!

King of Our Castle

Of all the gifts, of all the blessings, of all the joys in this life, none has been greater than my husband.

Man of character, humor, steadfastness, honor and faith, somehow you fell into my lap and I cannot believe how lucky I am. Thank you for your unwavering support, your flexibility and patience with this cancer craziness and all the fussing and changing of routine that it has brought. As difficult as this has been for all of us, it must burden you the most, but you rarely give a hint of this.

You have made me a far better person over the years. You brought me to my faith and for this I am most grateful. But most of all, thank you for being the best dad I could ever have hoped to have for my children. They are the most blessed of all.

Love you.

Fully Retreated

I returned home last night from Northern California where I had the pleasure of attending my annual "silent" retreat. I had planned this, of course, months ago, before my health situation changed so dramatically and I had recently become unsure I would be able to attend. Yet, once again thanks to the help of my friends and family who made sure I would not only get there but would be well taken care of, I was able to go and I am so happy that I did. Thank you, I would be lost without you!

You may wonder why the silent part is in quotes. A truly silent retreat, I believe, is absolutely the best way to stay in contemplative prayer with God and hear what he has to say. However, I have yet to accomplish this practically so I always feel compelled to admit that I do not do a very good job of maintaining silence as I so love to discuss the things I am thinking about and learning...and when your roommates feel similarly it is quite difficult to keep things totally quiet up in the room. Perhaps I will do better with that in the future. And perhaps not.

But either way, I absolutely loved these few days away where I could sit in front of the blessed sacrament, listen to meditations on all kinds of topics, truly consider my future and that of my family, and just read. I was able to thoroughly think through things that concern me and come to peace with them. This retreat was completely different for me than any I have been on over the years simply because my life is so uncertain at the moment and I am processing things much more simply. This made for some powerful connections and moments of clarity that will keep me going for quite some time. (If I can remember them next week, of course...but I DID take notes so I can re-take this retreat every few days if need be!)

One of my favorite parts of this retreat was reading more about Bishop Don Alvaro, successor to St. Josemaria, founder of the Opus Dei. As many of you know, I have been requesting his intercession since my original diagnosis and remain completely hopeful that we can get our needed miracles aligned--his for ultimate canonization and mine for a complete cure and a long life to raise my family and serve my community. (For those of you unfamiliar with saints and canonization, saints become officially recognized, or canonized, by the Church when there becomes proof that they have obtained miracles here on earth for those who have asked them to intercede on their behalf. The day I was diagnosed I received a prayer card for Don Alvaro and have been asking for his help in heaven ever since.) God, of course, is the only one who heals and cures, but having those nearby him join you in asking for help is just like asking our friends here on earth to pray for us. The hope is that Don Alvaro is right there nearby so he can hear him really well.

At any rate, I learned through my reading that while the Rome headquarters of Opus Dei, called Villa Tevere, was being constructed in the 1960s, it was Don Alvaro's job to be sure that the workers got paid every Saturday. This was no small project, and the building forged on and continued on faith even when they had absolutely no idea from where the salary for the day would come from, sometimes even hours before these men were due their wages and their families waited to buy groceries. In the meantime, Don Alvaro struggled with his health, coupled with this great stress of providing from nothing, week after week. But somehow, every single week, he managed to find the money and pay each bricklayer, or to rearrange the debt in a way that could carry him to the following week with no one going hungry. This was never easy and in retrospect cannot even be understood really, but he did it and Villa Tevere was completed. It cheered me greatly to know that Don Alvaro just may be a last minute kind of guy, the kind that works best under pressure, so rather than becoming impatient to feel better NOW, as I am apt to do, I may just have to wait until Saturday to get paid, holding faith that somehow he will come up with that wage. It's hard to explain how much I enjoyed reading about this and applying it to my hopefully pending miracle.

And perhaps when I am healthy, I can go to Villa Tevere myself and visit the tomb of Don Alvaro to thank him. Sounds nice, eh?

Another thing I really enjoyed about this particular retreat was how much more comfortable I felt being there versus the first one or two times I went. The retreat center at Trumbull Manor is a beautiful old Victorian home, three stories with a big veranda and classic shutters. The outstanding food is served, silently as you listen to a tape, family style. You are truly pampered in surrounding and generous care but the first few times you are there, at least for me, I was overly concerned with protocol and spent a lot of time watching those around me for clues as to what I was supposed to be doing. This is naturally distracting to your purpose there and it is so much better to have a grip on how everything works and what is expected.

Many people sign up for a "job" or two as we live family style to keep things running. The first year I went, probably 8 years ago now, I was so nervous. I did not know anyone (so I was actually really silent) and didn't know how to ask about how some of the jobs were done, but I signed up for something I was sure I couldn't screw up: rising slightly early to open the big beautiful plantation shutters on the outside of the veranda and then close them as dusk approached. Well, that didn't work out so well for me. The first morning someone had beat me to it and I was horrified that I had failed to do my job and not sure if I should talk to someone and explain or stay silent. How insecure I was. But that wasn't all. That night, determined to not screw up again, I hovered in the living room until I was sure it was the right time to begin the shutter closing process. I raced outside, went to close the first heavy shutter and to my complete dismay had trouble with the hook and ended up ripping the entire shutter off the side of the house. What to do? TELL someone in my silence or wait for someone to notice? I had no idea and was so completely horrified that I was paralyzed.

As I sat on the veranda yesterday afternoon remembering this now fondly, I realize how much I have grown as a person, in faith, as a mother. I still have tons and tons to work on, but I am so encouraged that as we examine ourselves over time we can see that if we do begin each day anew, with a genuine desire to please God, we will. Miniscule steps, some even backwards, but all ultimately bringing me along to the better person I so want to be.

If you have not been on a retreat before, consider one. If you are too busy to even consider it, then I double insist. Without interior life we cannot become who we are meant to be.

Beautiful Milestones

Hey! My baby isn't a baby anymore! She is potty trained all of a sudden. She can swim across the pool and take breaths in the middle (thank GOODNESS!). She even tells knock knock jokes, as you can see. Ones that make sense!

After 13 years I am done with diapers. High chairs. Cribs. I would certainly be mourning this at some level if I were not feeling so happy that my family is becoming more self-sufficient at a time when it really needs to be. What a relief it is to me that those who are helping with the children have less baby helping now, since that is so much more difficult physically. And how happy I am that my youngest and I can have conversations and read books that she will have more and more memories of to build on. It is a good thing.

Speaking of milestones, I too have been achieving some. Each day I am able to do a little more, viewed as a whole. I run the gamut from pretty good days to some still some fairly bad days, but overall am sleeping a little less and doing a little more. I have been able to make it downstairs each day this week to have breakfast with the kids before school. Today I even made their sandwiches...granted it took me nearly 40 minutes to accomplish this task that should take 5, but I am only slightly discouraged by this as I saw the pleasure the kids took in seeing me do this for them.

I have been able to have them read to me in the evenings as well and at least be near them as they do their homework (it is really, really sad how little I can help them right now. The most basic questions are stumping me and sometimes I can't even figure out what the actual assignment is even after reading the instructions. But I am sure this will get better over time.) I am definitely NOT smarter than a 5th grader right now!

The hardest part for me, besides the intense fatigue and useless feeling that goes along with that, is the shaking caused by the Decadron. My hands shake so much that it is difficult to type and text and write and hold things without spilling. I don't like it at all and hope that as the swelling goes down and I am able to taper off this steroid this side effect will soon be behind me. I tried to talk my way down on the Decadron at my infusion yesterday, but the persistent numbness on the right side of my body and some visual disturbances I have been experiencing are telling my docs that the swelling is not yet abating (which is not alarming or unusual at this stage, so don't worry) so I cannot yet cut back the Decadron. So, for a few more weeks at least I will continue to cry too easily, likely gain a little more weight which I can hopefully get rid of later, but rest assured that I am doing what I need to do to get better and stronger for my family right now.

This is also been a time of great blessings for me as I have had lots of time to rest and pray and spend with friends I haven't seen in far too long. My dear friend Jennifer flew out from Texas to be with me for nearly all of August and September and I am so, so happy to have her with me. Local friends, grandparents and neighbors are here every day too, filling in on groceries, rides, just playing with the kids or taking them out or swimming with them or helping with homework. The generous and amazing meals keep coming and are SOOOOO appreciated. I could not live enough lifetimes to pay forward the charity and goodness that have descended on my family. You have all taught me so much about being the hands of Christ on this earth. No one wants to be sick, but if you've gotta be sick, this is the way to do it. We have more help right now than we need which is amazing when you think about a family of nine with six children in three schools and football/cheer season going on to boot. Good thing since this will be a marathon rather than a sprint for us it seems, so it is nice to spread things out over many people and much time.

At any rate, just thought I'd post to let you know that I am slowly making some strides, I maintain my good cheer and strong faith completely and that I could not be more humbled and grateful for all of you.

By the way, if you found Natalie's joke totally unintelligable, here is the transcript:

Knock Knock

Who's There?

(Natalie says something unclear so Jay says start over)

Knock Knock

Who's There?

Boo.

Boo Who?

Don't cry, it's just a joke!

Looks Like It's All in My Head

And believe me, this is a good thing!

I got the results of the whole body PET/CT scans I had done last week, the first ones I've had since May, and they are literally the cleanest, nicest scans I've ever had. No evidence of cancer in liver, lungs, abdomen, or any other major organ. Even the bones are quiet and well controlled, though there are some lesions on my thoracic spine that could wake up at some point. For now they are dormant, and behaving and there is absolutely nothing of concern going on anywhere in my body except for my brain. Which, although clearly not insignificant, is way, way better than trying to fight a multi-front war. This is really great news.

That means the yucky I am feeling is mostly from the strong steroids that are keeping the brain swelling down while things heal, so I can most definitely take that for a few more months. It is so nice to know it is a medication side effect rather than new cancer growth. I am definitely NOT a fan of the steroid as it makes me bloat and swell and get really hungry, weak and weepy. It also disturbs my sleep patterns, but again, this is a small price to pay to keep the brain from swelling too much and pressing on the skull, which is even less pleasant since that gives me headaches and keeps the right side of my body very much on the disconcertingly numb side.

I will remain on Herceptin infusions every 3 weeks (which have very few side effects, similar to my previous trial drug T-DM1) and I take the targeted biological therapy oral medication called Tykerb every day. This is causing me a few side effects but has a molecule small enough to cross the blood brain barrier, so this is really the workhorse that is attacking those cancer cells in the brain for me right now. The Herceptin (along with the Tykerb too) is what is keeping things controlled below the neck. These two drugs are pretty amazing in that they work together to clamp down both sides of the HER2 protein that makes my particular cancer so aggressive. The Tykerb gets inside the cell and attacks from the bottom while the Herceptin takes care of the one that floats outside of the cell and caps it in a way that tells it to quit producing. I may have oversimplified the chemistry of this a tad, but at least it gives you an idea of what is going on.

The truly amazing thing about all of this is that, to date, I have STILL not had any general chemotherapy. At all. Or hormonal therapies. I have only been on targeted therapies have have found and killed my particular cancer cells and I think this is pretty amazing. Right now it is the effect of the brain radiation that is keeping me laid up, not the drugs (excepting of course the steroid which WILL be reduced over time) and I am pretty amazed by this. When needed, I have quite a number of drugs, including these two entire classes of chemos and hormonals, to throw at anything unpleasant that decides to come my way, so I am pretty happy with where I am sitting and so proud of all those cancer researchers who have figured out that you don't have to kill a ton of healthy cells to get at the cancerous ones, at least right away. You are buying me precious time with my family and I am so very grateful.

As always, thanks be to God and to all of you who are so faithfully praying for me. It is nice to share some good news. Next scans...November. So for now? We wait in hope!

Accomplishment of the Week

First day of School at Sacred Heart!

Particularly, I was able to see Tony to his first day of Kindergarten on Monday. I wasn't sure if I could gear up for it, but with lots of help I made it and I am so happy I did.

I am very blessed in neighbors and family and friends who can drive my kids to and from school every day, thank goodness, as I never anticipated I would ever not be able to drive myself somewhere for any significant period of time, but these past two weeks I have been so weak and fatigued that getting out of the house, for even an hour or so, takes many hours of prep and recovery and there are days it simply cannot be done without putting so much of a burden on everyone around me that I have to pick and choose carefully. I think I chose well how I spent my energy this day, though!

This year Joey began eighth grade at Joe Walker Middle School (not pictured, as he started a week earlier and is really too cool for first day photos anyway--but don't worry...football is upon us and I will have plenty to post once his game action shots start coming in). He is already having a great year and I am so proud of the person he is growing into.

Lindsey officially began Jr. High as a sixth grader (gulp...I have reverted to using her kindergarten photo bookmark in my bible just so I can cope with this). Sam is a 5th grader and Julia is a 3rd grader. They all have great teachers and are in a small, supportive environment just perfect for what we are all going through right now. I feel nothing but blessed to see them go and come home happy every day this week.

Because Tony is a summer birthday, last year we chose to send him for a year of Kindergarten to our local public school first and I am so glad we did that. He marched into his class on Monday totally with the program, comfortable with the classroom and confident going in. He probably would have done fine going straight in a year ago but especially given recent circumstances around here I am glad for his extra confidence and hope it sticks with him as he moves through the grades. Plus, he is now in the same class with his three good friends (read: sons of MY good friends which as any mom knows is invaluable in the classroom for helpful reminders throughout the school year!).

I am grateful for our schools and our community, but most of all I am blessed beyond belief that I am here when they get home to greet them, sign their assignment books, listen to what they are learning about and who they are sitting next to and who is new this year in their classes. They don't seem to care that most days this week I am still in my pajamas when they get home, sometimes not even having made it downstairs a single time (I try to save my big push for dinner). They just trickle up and visit and it is the most precious thing. I would say hooray for the small things, but this is not small. It is HUGE. Every single day.

Warning: Photo of a Bald Lady Coming Up!

Now's your chance to look away if you would rather not be left with this image, but I've gotta tell you I'm feeling pretty good about it all, so I don't mind at all if you take a look!

Not that I would ever choose to become bald, as someone who has always had a fairly good relationship with her hair and always enjoyed wearing it long and braiding it and playing with its color, etc. Nonetheless, I'm going to go ahead and say that hair just might be overrated a tad, particularly when you are dealing with big life issues that leave less time for fuss.

When I am around others I cover my head with a scarf or a hat, but when it's just me I am feeling great just letting it all out. Thankfully, it is summer, and it is so cool when I am hot! My shower takes 2 minutes for the first time in my life (which is a really good thing let me tell you since my legs don't hold me up right now much longer than that anyway). I have this wonderful cream to help with the radiation burn (which, thankfully, I did not get very badly) and it makes my head soft like a baby's.

The top is just a bit fuzzy like when my sons get their first really short football crew cut of the season. As they have gotten older, they have lost all patience with me for rubbing the tops of those new cuts, so now I can sit here and pat my own soft fuzzy top whenever I feel like it! And as an added bonus, with my newly expanded stomach I can practice rubbing my belly and patting my head at the same time! (For those of you genuinely concerned about my mental status, don't worry...I don't actually do the belly part, I just couldn't resist the idea).

I love my pretty scarves and look forward to choosing one for the day. I even have a "cranial prosthesis" (OK, wig, but doesn't it sound so much fancier to say it the other way? My insurance company seems to think so) that I have not worn yet that I am looking forward to that is just different enough from my old hair that I am going to feel like a mystery woman when I put it on. When it is cooler.

But the very, very best thing about not having hair for the moment is not having to ever know where the hairbrush is. As a mother of four daughters, no amount of threats, punishments, complex hiding schemes (I even contemplated wiring it to the bathroom wall) had consistently kept my girls from stealing my hairbrush when they really, really needed it quickly. Like every day before school. I have been left post shower so many hours of my life desperately searching for my brush before my hair mats down for the day that I now literally leave the bathroom in a gleeful dance for not having to perform this ritual.

The few times recently that the girls have come in to me frantically asking where the brush is (considering, of course, that they have been amply supplied and resupplied with their own hair products), I have enjoyed such genuine, carefree laughter (and it really IS more fun to laugh when you have a Santa sized belly) that this alone has been nearly worth it all. Girls, figure out where your own darned hairbrushes are and devise a system to not lose them ever again. I feel change-a-coming, I do, I do!

So for now, happy bald! I've got a lot a work with.

The Dignity of Human Life--I've Still Got It!

Human life is precious. From conception to natural death, in all its forms. Healthy, weak, strong or not, there is value in it all. I have always believed this and do not waver from this now.

I have friends with special needs children who have been more blessed than they could have ever imagined by these amazing souls, simple and close to God. I can clearly see how any of us who care for those weaker around us makes us all less selfish and closer to the people we are supposed to be. (And, yes, that definitely counts all "regular" parents--sometimes that is the very hardest thing to do!)

That being said, things certainly do change perspective for a person when she shifts from being the care giver to the care receiver. It is much easier to be the strong one, caring for your family, in control of your own life. When you are suddenly the resource sucker you may find yourself slowing down a bit to contemplate and reconfigure your value in this whole equation!

So, that is what I have done. Reconfigured my value a bit for the time being, and I'm finding, like anything, that's not such a bad thing...it just depends on how you look at it.

At the moment, I sleep and eat, am given my meds regularly by those caring for me, and get driven to medical appointments. Not a lot of value in that on the surface to be sure. In addition, my friends and family are taking care of my seven children, including all things relating to start of school and the football/cheer season (no small amount of details there) and the mountains of food and laundry that go with a family of nine. I cannot be left alone right now, so this takes several people on any given day. I never imagined when I had seven children that I would be unable to care for them myself before they were grown. Humbling to be sure.

On the bright side, however, I have never been more available (snoozing aside) to listen to them read to me, or take a nap right alongside Natalie. They know just where to find me when they want to tell me about something that happened to them. And they are having a ball holding tea parties in my honor and bringing me food trays that I am not too busy to receive and participate in. For perhaps the first time in their lives I am a more or less captive audience to them (again, snoozing aside) and I am loving their visits throughout the day. Definitely value in that.

There is also a great deal of value in my having to get out of the way and let my children do some things for themselves. This month they have all learned new skills in the kitchen and laundry, and Natalie even potty trained and learned to swim across the pool with so many adults around watching and helping. How wonderful!

Best of all, though, is the quiet, contemplative time I have now (when I can stay awake, that is) to pray or read or think about things I could not fit in my brain before. Nothing I'm going to change the world with here, but time that I think will change me and my perspectives on life for the better. Time that has me plotting how to be a better, more charitable person when I make it through this difficult time. Good stuff, to be sure.

So, when you see me now, formerly strong and now so weak, do not pity me or feel uncomfortable or unsure of what to say. I am still me, 100%, inside this hopefully temporarily failing body. I am still contributing in my own way. I am here to smile at my children and hear about my husband's day, and to pray for any intentions you may have as well. So let me know what they are!

It is very tempting to imagine, especially in our work-valued society (and indeed we ARE meant to work as humans, work is good and right for us) that once we cannot work we are useless. But if allow ourselves, our non-working times can be our time to become the decorations in the hallways of those still working so hard to enjoy.

Happy 10th Birthday, Sam!

Happy, happy birthday to our sweet Sam. Child of light, child of joy...child an entire decade old now! How did that happen?

Sam, you are a true gift from God not just for our family but to all. You are so funny and sweet and kind, always generous and thinking of others and what they might need. You are self-sufficient, independent and just plain fun to be around. You are a great joke teller and always know just what to say to lighten our moods and make us laugh. You are an amazing brother to your siblings and are always so willing to help out the little ones.

May God bless you richly always. You are one super-loved child!

The Graduate

I did it! 20 sessions of daily Whole Brain Radiation are behind me and I am so happy. I do not have to go back to the doctor for three whole weeks. I am so relieved and joyful!

I will be honest. I was not sure I was going to make it through this. I have been blessed with good health most of my life. Pregnancy after pregnancy, along with a year and half with Stage IV cancer, did not even begin to teach me what "sick"really meant until this month. The sick that leaves you feeling like you no longer have any control over your body or your mind, the kind that makes you realize, with complete clarity, your mortality. The kind that makes you understand that we are all completely reliant on our friends and family, ultimately, to care for us when we have reached a state when we are entirely unable to do so for ourselves. Truly humbling, life-changing, sick. I get it now, and I respect it. Cancer is not for wimps, no sirree.

But this wimp is stirring and oh-so-ready to start feeling healthy again. They have officially stopped shooting poison in my brain and I am about to enter a period of 3-4 months of healing here, where we wait while my brain stops swelling and we can get a better idea of how this treatment worked. We will know in November. By all accounts my great fatigue and inability to process things like a normal human being will continue for several months here while my body recovers from the great insult it has received, but I am completely hopeful that little by little I will return to strength here.

I am physically broken in the sense that I am very easily overwhelmed by conversations and needing to track details of things. I have little short term memory right now and cannot walk or stand for more than a few minutes without becoming too weak. I am bloated and swollen, bald and fuzzy but so very grateful to be alive and here with my family. I am enjoying what I can only describe as one of the most blessed times in my life as my friends and family have come from all over to feed me and care for me and make me laugh at all the wonderful things around me. My spiritual life is strong and I am filled with hope for the future, no matter what may come.

Just a little update for you all...I believe positive things are on the horizon!

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!