Not What I Expected

I had imagined all sorts of things...a horn like a rhino's that the kids could play nerf rings on. An upside-down kiddie pool with a water collection feature in the sagging middle. At least some jagged staples giving me a partial, really-mean looking sneer-shaped facelift. I was really looking for some respect on the playground. Can't you just hear the 5th grade boys someday soon when I come to get my kids from school (God willing)? Mrs. D. is SOOOOOOO cool! Sam, can I come play at your house so I can get a better look at your mom's freakish head? Do you think she is one the characters from the Lightening Thief?

After all, folks, I had BRAIN surgery today. Some impressive evidence of this would be nice.

Well, color me disappointed in this regard. All I have to show for having had a hole the size of a drinking straw drilled into my head and a catheter threaded deep into the recesses of my brain today is a sweet little white piece of gauze delicately edged in blood. BOOOOORRRING!

Well, at least I have a shiny new button for my purse that reads, "I had brain surgery. What's your excuse?". This cheers me greatly in the absence of all the above. Because, after all, brain surgery is a really big deal (if it wasn't, we wouldn't have all those "It doesn't take a brain surgeon..." jokes), right?

Ok, ok....enough joking around about something so very serious. To recap, this week alone I have had my spinal cord punctured, fluid removed and replaced with extremely toxic chemo (no anesthesia whatsoever); an egg beater placed (and turned on, mind you) in my femoral vein, a filter threaded with wire down a vein in my neck and attached somewhere in my abdomen) to catch the pieces of blood clot loosened by the egg beater before they reached my lungs (twilight anesthesia--don't fall for it, there is no such thing); fasted, even from water and ice chips, on a queasy stomach, for two days in a row until 6pm as I waited for my surgery; endured ridiculous tights that deflate and inflate on each leg to prevent more blood clots; had my skull opened up for the express purpose of being able to bathe my brain in more toxic chemicals (though, blessedly, far less toxic than the methotrexate from the spine, since this one is for the long haul), and had a rough breathing tube shoved down my throat when all I want to do is start singing again.

Now, this may seem like a giant complaint (and I admit it kinda' is!). But the truth is that I came dangerously close to death at least several times in this last month...giant undetected blood clot, near starvation/dehydration, measurable new growth, though happily not too much, of the cancer in the brain in just 3 weeks...but scariest of all, the beginnings of my belief that I could not endure any more. I didn't think I could accept feeling so sick for much longer and was losing my will to fight. My family and your prayers are what pulled me through. I felt your love and support in such a tangible way that it got me out of bed for my nightmare-procedure-of-the-day rather than rolling over and drifting back to sleep where nothing hurts. You all reminded me to continue praying for myself, too, and so many of you came to help me do just that. You made sure I saw a priest, was anointed, received the Blessed Sacrament nearly every day I was in the hospital. You continued to bring meals and send cards, my kids' football/cheer organization created and sold "Rebels With a Cause" rubber arm bands and special shirts to benefit our family, and put the boys at every level in pink socks for the whole month. I am so grateful to you all for helping me to keep the faith, literally.

Now here I am, likely going home tomorrow, with every expectation of some extended period of good quality of life. Now, I am a realist. I know my statistics, but I am not a number and intrathecal administration of Herceptin is showing great promise and is still very new. I am on the forefront (again) of what our new medications can do and how they can be used. My particular flavor of cancer HATES Herceptin and I can't wait to send it a message tomorrow: we are not messing around and we are not backing down. (oh, yeah,and we're MAD too!)

Please continue to pray for my healing but also that my faith and will stays strong because to feel that waiver, even a tiny bit, is the scariest thing of all.

With much love, hope and gratitude,
Suzanne

Happy news!

Hopefully, this will be my last update as guest blogger and Suzanne will be able to resume blogging very soon!

I went to visit Suzanne today and I am happy to report that she is doing wonderfully inside and out. This afternoon she finally had the procedure for the Ommaya reservoir. It was all done without a hitch and when she returned to her room she was awake and making jokes. The worst part of the whole thing was that they still won't let her eat or drink until they review the CT scan to make sure all is in place correctly. For the first time in weeks, she is hungry! The doctors finally found a medication to ease the nausea and she is busily reviewing her menu and anxiously awaiting the clearance to eat.

Tomorrow, she has a 10 am appointment with her oncologist who will then administer the herceptin infusion. After that, she is free!

The herceptin being administered straight into her brain will control, if not completely eliminate, the cancer that is residing there. With the cancer elsewhere already under control we are hoping that this is the beginning of a wonderful time of recovery. Praise God!!

A minor delay

As you know from Suzanne's previous post, she was supposed to have her new port put in yesterday. However, there was a delay and she didn't have the procedure until this morning.
As of now, we are not positive when she will be having her first infusion of the Herceptin through her new port. We do know that it is against hospital policy to do the infusion while she is still an inpatient at the hospital. So, she will have to be discharged in order to go to the Westwood campus to have her infusion. After that, we will see. Will they simply send her home? Send her back to Santa Monica to be readmitted? Quite a few questions and not enough answers!!
Thank you all for the continued love, support, and prayers. When we learn the next steps I will do my best to post it here.

Just in Time for Halloween

Well, here I am, still in Santa Monica Hospital. Things are...well...interesting!

If you will recall, I was originally admitted a week ago Monday for dehydration due to my near constant nausea and inability to keep food down (if I could even swallow it in the first place). I had become so weak that I was virtually unable to get out of bed and so disinterested in food that it seemed I might never eat again. I didn't realize how sick I was until I started rehydrating and getting a little food In.

As you have already heard, when I arrived we discovered a 6" or so blood clot in my left groin, stretching across my stomach, so we dealt with that first (see previous post). Meanwhile, still trying to get a handle on my nausea, we had been going through multiple anti-nausea drugs to try to find a combination that worked for me, we ran another brain MRI to see if anything new had developed since the last one on 10/3. The results were mixed. Biggest tumors still shrinking, little ones undetectable. However, there was some indication of development of leptomeningeal carcinoma, meaning thie cancer had spread to the Central Nervous System (CNS). This, of course, would not be a positive development.

To determine this, I received a spinal tap early last week. Not a fun procedure but more from a conceptual than a physical standpoint. I don't know about you, but I'd rather do just about anything than have someone puncture my spine. With no sedation.

Apparently, enough of my doctors were convinced that the cancer would show as present, given the images on the MRI, that they unanimously decided to inject a high-dose chemotherapy called methotrexate directly into the lumbar spine. You know, since they were there anyway. I slept 21hours immediately following.

Next morning come to find out that the spinal tap is negative (didn't see that one coming)! Docs still express confidence that it will eventually arrive so none considered this a wasted treatment. Now, after considering all the options, we have a treatment plan I think we can all live with. On Monday, they will be placing another port in my body.   This one will be larger and stick out more. It will be attached right in the middle of my giant bald head so if anyone has some bolts for my neck I could have quite the hip Halloween Costume.

This is called an Ommaya Reservoir and will allow them to deliver Herceptin (which is the same drug I am already taking) directly to the CNS. Yes, it means carving some small portion of my skull to place It, but, hey, no more spinal taps. Yippee! And THEY will sedate you!

Before this Ommaya Reservoir, two more lumbar punctures at least were planned to confirm a positive result. I won't be missing those.

So next things next: we have relatively low (I hope)side effect treatment plan for the cancer which seems to be pretty much under control, both above and below the neck. Most reassuring to be sure is that we know we can directly get across the blood brain barrier if we go interthecally. Here's hoping for a good run on try Herceptin. And some quick and lasting help with the nausea !

Another update from your guest blogger

Suzanne is still at the hospital so, yet again, I am stepping in to update everyone.

On Monday, Suzanne had a spinal tap to check for leptomeningeal carcinoma. Cancer in the meningeal fluid. We just got the results, which were negative. However, because of the extremely high rate of false negatives with this test, they will need to retest her again in a day or so. This would be an explanation for the nausea. The first step in treatment in a drug called methotrexate being added to the spinal fluid. While they were performing the spinal tap on Monday, they did start the treatment.

Today, she met with the doctor who previously performed the stereotactic radiation on her spine. He took a look at her scans and was very pleased with the results. The brain tumors have shrunk significantly and there is currently no need for any surgery.

As for the blood clot, it is still present. She has started PT and hopefully she will have some relief from that soon.

At this point, we are looking at about another week in the hospital. Please keep her and her family in your prayers.

On another note, life here in the DiSilvestri house is going along as normal as possible (CHAOTIC!!) and I had a funny story to share.
Trooper, the enormous mastiff, likes to greet people coming in the house with some sort of stuffed animal, shoe, or anything else he finds laying around. Yesterday, Natalie was preparing for Halloween and put on a Winnie the Pooh costume. She then fell asleep curled up on the couch. Someone knocked on the door and Trooper, in his excitement, picked Natalie up in his mouth. He promptly dropped her onto the floor where Natalie stayed, asleep, while we all laughed hysterically. Even through all the uncertainty and stress, we are finding some time to laugh.

More tests...

Just a quick little post to keep you all up on the latest news.

Suzanne is eating a bit better today, though the nausea is still a major problem. We are still awaiting complete results on all the tests they have already run, and there is one more test planned for Monday.

As soon as we know anything more, I will post it here.

Thanks everyone and PLEASE continue to pray.

Finally, an update!

Hello Raising Saints readers! My name is Briana and I am guest blogging for Suzanne right now. She is well aware that everyone is anxiously awaiting an update on her health and, as she is currently unable to successfully blog, she has asked me to temporarily step in.

So, the much awaited update: This last Monday, Suzanne was admitted to UCLA hospital in Santa Monica. She went in for a few reasons, mostly dehydration and extreme nausea that was keeping her from eating or drinking much of anything. Also on Monday morning she developed pain in her left leg/groin area. Jay took her to UCLA to see her oncologist and, after infusing her with fluids, it was agreed that Suzanne be admitted to the hospital. They discovered a large blood clot in her femoral vein.

She was finally admitted and transferred to the hospital in Santa Monica because that is where the oncologists who specialize in tumor/mass related cancers are based. She got a wonderful doctor who is very concerned about a number of things. Obviously, the blood clot is a high priority, but the nausea is also very concerning. At this point, they have tried nearly every anti-nausea medication to no avail.

On Tuesday afternoon, Suzanne underwent surgery for the blood clot. First, they placed an "umbrella" type filter to prevent any clots from passing into her lungs. Then, they used an egg-beater type device to go into the femoral vein to break up the clot. The first part of the surgery went extremely well and the filter is in place. The second part of the surgery was only partially successful. They were not able to break up the clot. They are unable to put her on any medications that would break up the clot because they could cause bleeding on her brain. For now, they are keeping her well hydrated and monitoring both the clot and the filter.

As for the nausea, they have ordered a number of tests, none of them showing anything yet. They did a new set of scans and so far no word on any abnormalities. The oncologist asked a gastroenterologist to see her to rule out any kind of physical GI problems. For now, we are just waiting, waiting, waiting. Waiting for tests to be run, waiting for results to come in, and mostly waiting for someone to figure out what is wrong so it can be fixed.

After spending time with her yesterday, I can happily report that she is actually more mentally coherent than she has been for a few weeks. She has some color in her cheeks again and we were able to spend some time talking and laughing. She is trying really hard to force food down because she knows that is going to be the key in her release. Throughout the day she was able to take a few bites of various foods here and there and keep them down.

She is getting excellent care. All the staff there have been so nice and helpful. None of us have any doubts that she is where she needs to be and that she is getting the best care possible.

On behalf of the DiSilvestri clan, I really want to say a great big thank you for all the help and support that has been offered. Our Sacred Heart community has been a beautiful example of true charity and we couldn't be more blessed to have such an incredible parish and school in our lives.
All the love and prayers are felt and greatly appreciated. Also a big thank you to the West Valley Rebels and all their support of our cheerleaders and football players. At this point there are too many people to personally thank, so please know that we are so grateful for all the meals, laundry help, chauffeuring help and general good wishes. Thank you all.

Our goal is to update here on a regular basis with the latest, accurate information on Suzanne.
So, tune in next time for the latest episode in Suzanne's journey.

Best Sleep I've Had In Years

Yes, sir, right here at UCLA Santa Monica hospital where I have been a distinguished guest since Monday.

So, to all of you with unreturned phone calls thank yous or emails, overdue bills or forms, or anything else offensive, please forgive me because that's a pretty good excuse in my humble opinion. Plus, I was really, really sick for the week or two before I got here, so it has been awhile since I have been able to have anything close to a normal day. Now that the requisite apology (for something over which I am completely unable to control) is over, I can let you know what is going on.

I can't eat. Very little stays down, and getting a bite of anything in at all is at times agonizing. I am nauseous nearly all the time (after 7 pregnancies I KNOW nausea, and this is right up there with the worst I ever experienced with even Joey in the first 28 weeks which was really bad). Obviously, this is a problem which, if we don't get a rather quick handle on, could be very bad.

So, here I am, where so far they have threaded an eggbeater down my neck with wire (or was it inserted through the incision in the back of my knee? I am unsure). It was incredibly disconcerting when they turned on the egg beater and it felt like Magic Fingers on the INSIDE of the leg. Really, really strange. I begged them to take that twilight anesthesia and turn it into a drug-induced coma, but their need to communicate with me during the procedure unfortunately precluded this. Next, we tracked two cups of barium as they traveled down my gastrointestinal tract, taking pictures along the way like tourists riding down the Grand Canyon on donkeys. Then came the chest CT to check on the pneumonia which turned out to be of limited use due to my inability to keep down the contrast. Then came the brain MRI to see if any new or different metastases there are causing it. Certainly we are hoping it is not that.

In the meantime, we have been going through every anti nausea med known to mankind to see if we can find something that can stand it's ground against this beast of a nausea I have going on. Finally, yesterday we found one that worked and I ate nearly normally today. Great news and I don't remember feeling as well as I did today in months since I am fully hydrated, had good nutrition in me, took a shower and even walked a bit.

The doctors will come and talk to us tomorrow about test results, and I know I will be having at least one more not-fun test on Monday. I never expected to be in the hospital this long and the whole thing is a little scary (could not do this without faith and trust in God, as it's hard enough WITH those things!). Please continue to pray for me and my family, especially the kids who I miss so much and I know miss me too.

As always, I am thankful to those who have literally moved into our house so Jay can be with me during the scariest parts and the kids can still get to school and sports and all. You will all be happy, I'm sure, to see Briana is guest blogging so at least there will be information when I cannot post. It was so nice to spend time with Jay tonight as I muddled through some of my fears about death and dying, potentially leaving the kids, etc. We ended up playing Rack-O and had so much fun. That is the stuff life is about at the end of the day.

I am praying for a long life, to see my kids grow up and for a good quality of life, only recently of which I have become aware is critically Important to someone in cancer treatment. Some treatments are more than tolerable while some are simply brutal. The next few weeks will bring many decisions for Jay and me and my doctors as we decide how to treat the cancer going forward. God's will be done and may we make the best, most informed choices we can make!

Good Scans, Not So Good Health

Sorry, once again, for taking so long to blog the news we have all been waiting for, but I have literally not been out of bed for days. I have been quite ill with pnemonia and unable to eat or drink much (luckily I have been "blessed" by a team of care givers who are making sure that I have consuming enough liquid and calories so that I don't require IV hydration and nutrients, but I must admit I am not making this easy on them, as nausea is my least favorite sensation and that is what anything that enters my body creates right now). But, it is nice to be cared for and I am doing my best to please everyone who loves me but sometimes I want to stomp my foot like a small child and say, "No more!"

At any rate, the brain and body scans came back as well as my doctor had hoped they would. All brain lesions have disappeared or shrunk substantially. The biggest of 11mm is now 6mm. There are no new lesions and everyone expects them to continue to shrink over time. We will check them every three months indefinitely and if they start to grow or change we will take a magic zapping wand to them individually but we are hopeful that they will just die on the sword where they are and that the Tykerb oral meds I am taking will simply keep them at bay.

The cancer outside of the brain also appears to be well controlled from neck to knee, so overall very good news out side of the pneumonia. This has been my first experience with pneumonia and I had no idea how painful it could be. I am trying to make it through one day at at time here, with seven or eight different medications that all make me nauseous but am hopeful that the meds are starting to kick in here, almost a week later. I can take a deeper breath today without screaming in pain and water tastes good for the first time in weeks. And, I'm blogging! Overdue, but doing it nonetheless!

So, once again, my apologies for making you wait for this this mostly wonderful news and bear with me as I make every effort to recover my strength and rejoin the world.

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.