Monday, September 29, 2008

Second Verse, Same as the First (although technically, I guess this is the third verse, no?)

Or, as the oncology nurse was so kind as to point out during the visit last month where it was confirmed that yes, the cancer is indeed back: “Well, it’s not your first time at the rodeo, that’s for sure.”

Um …. Thanks??? I ….. think???

Anyway, it seems the wheels of progress are either excruciatingly slow, or spinning at top speed. After not hearing anything from anyone, all week, we got a call late Friday afternoon confirming Blaine begins radiation today. Although he’s scheduled for thirty-two sessions in a row, we already know he’ll miss day #2 --- because let’s not forget that in the middle of this little bitty minor nuisance we like to call “CANCER RECURRANCE”, we still can’t find a doctor at Tinker, or in the greater metro area, with the gonads to write a script for the narcotics he takes. That he has taken for four years. Four years of medication, without a single problem, yet no-one here is sure they are ok for him to take.

Whatever.

So the government will waste an entire days’ work for him, and taxpayer’s money, to fly him to San Antonio, to meet with a military doctor THERE who states (and has stated since he had his first visit almost a year ago, in complete agreement with Blaine’s pain management doctor in Georgia) that his prescriptions are completely and totally appropriate, thank you very much. So that a single button on a single computer screen can be “approved” and Blaine can then fly all the way home and have the pharmacy on his base actually fill the prescription. At least we hope. They told him last month that the pharmacy doesn’t think Blaine needs these meds; at least not in this amount. Isn’t that helpful?? I’m so glad they are able to make that judgment based purely on ….. what? Can anyone tell us what they are basing that on? And why .... in the face of 32 upcoming radiation treatments ... now would be the time to DECREASE his pain meds????

Again --- Whatever. It’s not like I’m frustrated.

But bottom line is Blaine will miss radiation day 2 for travel, and although they said it was six weeks of radiation at five days a week, if *I* do the math …. Not that math was ever my strong point ….. but if *I* do the math, thirty-TWO sessions is a little more than six weeks. So six weeks, plus a session or two, or maybe even three or four if he has to make up the ones he misses ….. drop the zero …. Carry the one ….. round to the nearest decimal ….. the way I figure it, Blaine will be finishing radiation sometime around mid-November.

Egads. That’s like a lifetime away.

So. If we could be so bold as to give all of you a list of specific prayer requests …. Or warm thoughts, or chanting, or incense, or positive imagery, or whatever else it is you prefer to do unless it’s sacrificing a live chicken because while I have no qualms about eating meat and absolutely no desire to go vegan, I would still hate to have the death of innocent chickens on my shoulders for nothing more than good thoughts for Blaine ….

(deep breath)

So, if we could ask you to pray specifically, it would be for the following things:

That *this* radiation, *this* time, kills the active cancer cells for good, and they never come back again, and this is absolutely the last freaking time he has to hear the words, “I’m sorry, you have cancer” for ever and ever, amen.

That he tolerates the side effects of radiation well.

That they (meaning the people who administer the radiation) are able to spare his remaining salivary gland. Since the right one was zapped with the first go-round, he’s already operating on decreased capacity …. For someone like me, who has a tendency to gleek when I’m excited, less spit doesn’t sound so bad. But apparently, so they tell me, spit also helps you swallow, eat, and protects your teeth. Lord knows operating at 50% capacity is bad enough …. Let’s pray he doesn’t go down to zero.

That the radiation isn’t too hard on his teeth. (Seriously. Who knew radiating certain parts of your head could affect all those other parts in such a negative way???)

That we win the lottery. Oh, wait. Wrong journal entry.

Several of you have asked how Blaine is holding up mentally. Honestly, he’s just ready to get this show on the road. Ironically, the weather here is cooling off and the humidity is lower, and he’s felt better the past month or two than he has since we moved here. Sucks, really, that he’s fixing to lose all that.

Or, you know, maybe he won’t. Maybe he’ll come through this with flying colors and never miss a day of work and absolutely NOT feel like his entire head has been microwaved, like it did last time.

Hey, a girl can dream.

Although, is it terrible of me to admit that since I canceled my annual Girls Scrapbook Getaway (with the best stinking girlfriends on the planet) in Chicago next week …. I must confess I’m going to be a wee bit annoyed if he feels great the entire time and doesn’t need me at all to pat his hand or bring him 7-up or mop at his brow with a damp cloth .... ?? You know. Not that I’m shallow or petty or anything. It’s just that if I’m giving up Chicago, I *better* feel needed while I’m here!

So for the most part, he (we) just want to get this over with. I'll be going with him to his first appointment today to talk to the doctors and ask lots of very important questions, like "why this?" and "why not this?" and most urgent of all, "Can you validate our parking??"

Then, there is a small part of us that feels annoyed and offended by cancer in general --- still stinging a bit at the insult of a recurrence. Not so much a “Why Me?” or “Life’s Not Fair” …. Just “Wow, This Really Bites” sort of feeling, and not a whole lot you can do about it.

And even a small part of us that feels embarrassed ... admitting something is wrong, and asking for help in any capacity, time and time and time again, is humbling and frustrating and exhausting. Fortunately, the vast majority of friends and family have come through for us with flying colors over and over. To be honest, it's always a little bit of a surprise to discover who bails .... but I suppose all life lessons are helpful, whether we realize it at the time or not.

And then, odd as it might sound, there is a huge part of us that is feeling: Gosh Darn Lucky.

(Yeah, “gosh darn” isn’t quite emphatic enough …. But even someone with a sailor mouth like mine has to draw the line at certain curse words.)

Here are the good things that have happened this past week, and part of the list of why we think we’re lucky:

Blaine got an all-clear from his dentist to proceed with radiation. Radiation to the oral cavity is extremely hard on the teeth (see above prayer list) and add to that the lack of spit in his mouth (again, see above) well, he’s had chronic problems with his teeth since this whole shebang started. I’m pretty sure he has permanent dentist-chair impressions on his butt. So to hear “No cavities, good to go” was a huge blessing.

Doctors and nurses have actually returned our phone calls, and apologized that we were left in the dark, even for only a few days.

Friends and family have reached out and offered us support and encouragement. (Dixie, the only thing in the world I love as much as chocolate is peanut brittle, so that box was perfect, thank you!) and (Kristin, the Quiet Heroes bag had so much amazing stuff in it … thank you so much for thinking of me, even though I couldn’t join all of you in Atlanta this year!) and (Renee’, I’m going to wear my bracelet the entire time ya’ll are in Chicago …. And possibly get drunk on Amaretto Slushies so I’ll quit feeling sorry for myself for missing it this year ….) and (to the person who sent our family the box from Jelly Bellies … dear Lord, I’m embarrassed. In their haste to rip open the box my children must have eaten the note or return address because I could not find it ANYWHERE --- thank you, and I’m so sorry I can’t thank you personally! Who are you?) and even more than the packages and cards and e-mails is the knowledge that so many of you are keeping our family in your thoughts.

And lastly, that although this is a trial that we’d rather not have, it’s certainly not the hardest one we’ve ever faced, and no where near as hard as the trials of others. Sadly, Blaine and I know too many families who would give anything to trade places with us. Surely the good health of a parent is bittersweet when the life of a child has been lost. How many families would be willing to trade the health of one of the parents if that meant they could have their child back with them, healthy and whole?

So whenever I get all pity-party-ish and feeling sorry for myself, I remind myself that WE. ARE. LUCKY.

And we better not ever forget it.

PS. Mitchell, I only met you once, at a 4th of July party. Your mom and I sat and talked about having kids who had undergone leukemia treatment, and compared stories and notes. Although that was as close as I ever got to you, I can see, even from here, what an impact you made on this community. There is no doubt in anyone’s mind how much your parents miss you. Your sister misses you. The kids at the school miss you. The boys on your baseball team miss you. As the anniversary of your death passed this weekend, it was the kick in the pants that I personally needed --- to remember to count my blessings, which thankfully far outweigh the bad.

29 comments:

Stacey said...

Here's an idea...while your friends are in Chicago you can go to LOUTOGO.COM and order yourself some Chicago pizza and hot dogs as well as cheesecake and other yummies!!
That way if you can't be there with physically you can at least be the gastrically!!

Julie said...

Dear Kristie,
I don't comment often, but I read everyday. I know due to the military we only knew each other in the same physical location for a year or two, but your wonderful blog keeps me feeling like we're close nevertheless. You have such a gift for writing and for bringing people into your life and making them feel close to you. My heart is breaking for you and Blaine, but I firmly believe that at some point the "powers that be" are going to say "Okay, I think that's just about enough for the Escoe's" and that point is going to be now. I wish that OK and VA were next door neighbors so that I could do something more than just read your blog and send all my chanting, praying, positive thoughts etc. your way. Hang in there, know that God's line has got to be busy and his internet site is going to crash under all the weight of our prayers. Keep writing you make want to be a better person just by reading. Love, Julie

Anonymous said...

Crying. Again.

You may want to repeat the crap sandwich entry from Kendrie's caringbridge site.. there may be alot of people who've never seen it and it was perfect...

Mary Burns in Albany NY

kim-d said...

First of all, it is my honor to pray specifically for ANYTHING for you, Blaine and/or the kids. And while it is true that there is always going to be someone who has it worse, your family has also earned the right to pity-party it up a little bit every now and then. Just because other people's situations are bad doesn't minimize yours. Just sayin'.

Anyway, lots of good thoughts and prayers coming from MN...

René S said...

Kristie, I learned this year after my mom had an almost life ending and certainly life altering car accident that making specific prayer requests known is powerful! It helped our family to know that others were praying for the specifics of our situation, and it helped others know how to pray for us. So, thank you for sharing details for us to take to our Father's feet on your behalf. Thank you also for the reminder to be thankful in all things. Hang in there!

mom25in5 said...

Aaah, loving my morning "kick in the butt" blog from you. :)

I was at a conference this weekend and one of the workshops was an exercise on taking "negative" life-changing experiences and finding the good. I didn't have to look far in my life (wish my life wasn't so "changed"!). God blesses us in the dark - thank you for reminding me of that today.

Hugs and prayers always,

Kim

The Running Girl said...

You will definitely be in our prayers. Thanks for the specific requests.

Tammy said...

You're in our prayers today and everyday! Tell Blaine to get busy kick'in cancers butt, just like Kendrie did! Hugs from Fort Worth!

karen said...

Dang Kristie, I wish I lived closer. I mean can your crap sandwich get any bigger, wait don't answer that. Who knows maybe I will get off my lazy arz and give you a call from your nothern stalker, online friend. Hugs (wait no hugs you don't like being touched) and prayers.

Sage said...

Kristie, I'm guessing that beneath that great facade of positive writing is a heart broken woman pleading for help. Just want you to know that I will be praying for you, too, not just for Blaine. And please keep us informed with the list of specific things to pray for.

"I will lift up my eyes unto the hills where my help comes from." PS 121:1

Blessings to you and your family.

Renee' said...

Keeping you guys in our prayers as always. Hang in there, Escoes. Prime rib sandwiches are on their way....

Anonymous said...

Thank you for the specific prayer requests. That really makes me (us) feel like we're part of the healing team. I hope you are over feeling embarrassed. I'm sure I'm not alone when I say that having the luxury to pray for someone else and not currently needing it is a reminder of how blessed I am.

Sparing you the details, I was sick not long ago and had no spit for a short time. It was miserable! That alone makes me hurt for Blaine.

Finally....the jelly bellys....those are another California treat. So glad the kids liked them!

Hugs,
Dixie

Natalie said...

I know, I KNOW how hard it is to accept help, let alone reach out and ask for it. But promise all of us, right this second, that you won't feel embarrassed, that you won't hesitate to ask for help, that you will let people help you in whatever way they can--physically, emotionally, spiritually, financially--WHATEVER. People do it because they love you guys and so many of us wish we were closer so we could be right there taking care of you.

Drop the guilt, drop the embarrassment--just let it go. You've received, you've given, you're receiving again. You know your chance to pay it forward again will come, so just let it be for now and concentrate on what you need to do to get things done.

Libby said...

Kristie --

I cannot say it any better than Natalie did - so ditto her comment for me!

All of you are in my thoughts and prayers so many times each day - where you have been for a long time now and will continue to be in the future!

Big, big cyberhugs to you - hope that's okay since, to my knowledge, there's no touching involved!

Grandma J said...

I am speechless. Your post is beautiful, provocative, kind, selfless, and it made me cry. I guess I can't believe how much you guys have been through...and for so long.
Prayers for all the specifics and more for you and the rest of the family and supportive friends.

Alisa said...

Please know that even those of us who read everyday, but don't comment everyday, do pray for Blaine and your family everyday. May this time kill all those evil cells and be the final time your family hears those dreaded words. You are an amazing support to your family.

Jenner said...

Sending tons of prayers.

Dianna in Louisiana said...

Kristie---- Know that my family will be praying faithfully for all of your requests. I personally find it appalling that someone who has served my family and our country like Blaine has must jump through so many hoops to get the pain medication he obviously needs. That being said...... Thank God you have doctors (and a vocal wife) who will be proactive in making sure Blaine gets the proper treatment and medicine. Thank God you have such a great support system in friends and family members. And, most importantly, Thank God you two have each other, and the pure, real love upon which you have molded your family. You will get through this my friend. As you've proven in the past, when life hands you a crap sandwich, you have the strength and enduring love to turn it into a learning experience which allows you to love even deeper.

Anonymous said...

This entry clearly validates the need for MORE cookie dough! Glad you decided to count your blessings instead of calories or frustrations -- math NOT being my strong point either!
Apparently the military training is helping Blaine to forge on, face the enemy and then enjoy some hard earned R & R. Hoping each and every one of your prayers are answered & going for the bonus round hoping that the stupidity of those that keep insisting on getting in your way via no brainers like pain management - well...let's just say payback can be a bitch!
Warm regards - good wishes and all the cyber support your fans/friends can muster -randy

URBAN BLONDE said...

I just wish the world ran the way I wanted with common sense being the guide but since it isn't I hope that Blaine gets the meds he needs and the treatment goes smoothly.

I really wish you all weren't going through this again and although I also said when my son was sick, there is always someone worse off then us, sometimes I didn't quite believe it.

Sounds like I'm wishing for a lot of things tonight so please know I wishing the best for all of you and sending lots of deathrays to kill those ugly cancer cells.

alayna said...

Lots of prayers coming your way that this is the treatment that does the trick and gets rid of this cancer once and for all!

jojo said...

amen...

Anonymous said...

Hi Kristie,

While me saying I'm sorry is about as useless to you as a woodpecker with a rubber beak, I truly mean it. It actually pissed me off to hear it's back for Blaine. Is that normal for a stranger to feel that way?

I've commented a time or two in the past. My daughter had ALL, which led me to Kendrie's page. Then I had the salivary gland cancer and did the radiation around the time Blaine had his in Seattle. As crappy as it is, the nurse was right about it not being your first rodeo. But I was thinking on that and wondered what Blaine did for his skin during his last radiation or for his dry mouth. Why I wondered was because- do you remember all the tips you'd get from others about the best way to give 6MP at night. Sometimes you'd get a cool tip from other parents that would make it so much easier for your child. Since I know that Blaine has been through radiation before, I thought it'd be useless for me to tell what I did during mine, but what if it wasn't, so forgive me if I'm telling you something you already know or did.

I had 33 IMRT treatments. I started using the radiaguard (www.radiaguard.com) lotion before I started. I used their lip balm during treatment. It helped so much with the burns on my neck. I also used 100% aloe vera gel, especially in the evenings. I used the Biotene mouthwash and used the biotene gel at night to help with the dry mouth.

I'm pretty sure he knows or did that all ready. I just wanted to help out someway. Would you or a friend of yours be able or interested in setting up a P.O. address or something so we could mail a gift card to help with you buying Ensure or anything? Oh, that's another thing. My husband would take my EnsurePlus (I could only stand the vanilla flavor)and put it in a bowl of ice in the refrigerator. It seemed like the colder it was, the better it'd go down.

I hope I haven't offended you in anyway with this by telling you something that you already know. I'm just looking at it as knowledge is power and wanted to give you any support possible. If anything, ignore me but do know your family is in my prayers!

Take care,
Tomika

Jeremiah 29:11

Lisa L said...

Praying. Definitely praying. You sound 'down' girl. And you have every reason to be. Your guy is suffering. Again. My love to all of you.

Anonymous said...

Thanks for guiding all of us to specific prayer requests.....as so many others said, it really feels like we're doing SOMETHING to help Blaine, you, the kids and the rest of your support system this way.

Praying, praying, praying.....

Mary

Pam D said...

I don't know if you've ever read the book "90 Minutes in Heaven"; I recommend it if you haven't. One thing the author admits is that is is much harder to allow yourself to be served than it is to serve others. I'll cook meals and bring food to people week after week, but the thought of needing others to bring meals to me gives me the heebie jeebies. Still, if you can just imagine every prayer, every meal, every good deed as a drop of love, and then realize that your cup is overflowing, you're then able to get a tiny glimpse of heaven, here on earth.
As for the nurse with the rodeo reference, well, it IS Oklahoma... Garth Brooks would be proud! I'm trying to imagine a similar reference in Georgia, but there are too many to be able to pick just one!
Praying for all that you've requested and more....

Jen said...

I wish all of you good luck- I can't even imagine having to worry about insurance and doctors seeing us when we went through my daughter's cancer. If there is ever a time when you shouldn't have to worry about bureaucracy, this is it.

I hope that you have someone close to you that you can scream to without putting a bright face on everything- sometimes it helps.

You're an amazing woman, with an incredible family- good luck to all of you as you start again. Our thoughts are with you.

Anonymous said...

Hey there,
I will be praying all that you asked for and more!! I'm going to miss you in Chicago!!!
Love, Lisa D in Hamilton, OH

AVT Coach said...

Hello, came to your site from stefunkc. Welcome to OK, and I am so sorry your family is going through this hard time. I live in OK and my husband is having surgery next week for prostate cancer. I will certainly keep you and your family in my prayers and follow your blog. I'm posting on Tuesday to help Stefunkc raise funds in memory of Mitchell. I look forward to reading your future posts!