Friday, August 26, 2011

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

Friday, August 19, 2011

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!

Thursday, August 18, 2011

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 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.

Saturday, August 13, 2011

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.

Thursday, August 11, 2011

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 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.

Sunday, August 07, 2011

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!

Thursday, August 04, 2011

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!