Well, it only took two days for Tricare to approve the radiologist’s request for a repeat PET scan. I knew they would come through for us … they always have …. Just seems frustrating to wait at a time like this. (Yes, my Canadian socialized-medicine friends are rolling their eyes and thinking, “Wait? You think two days is waiting for a test??? Lady, you don’t know NOTHING about waiting for no medical tests!!”) (Actually, that sounded more like Bronx friends, didn’t it???)
Without going further into boring, personal, medical stuff, suffice it to say this is not the first run-in Blaine has had this week …. With Tricare …. With the medical staff on base ……. With the pharmacy …. With the Air Force in general. So the waiting for this was just a teeny tiny straw on a teeny tiny camel’s back, and it will all be fine in the long run. (In through the nose, out through the mouth.)
Now, we …………… wait some more. Good thing Blaine’s cancer is a slow-growing kind, or all this waiting would have killed him. As it is, I think it might kill *ME*, considering I was born without the DNA for patience.
The radiation-oncologist wants to meet again with the head and neck surgeon, and they want to confer with the tumor board, to decide the best plan of action. Which is fine with us, because the more smart people you have reviewing your case, the better. But one doctor is on vacation next week, and probably the week after that it’s the Jamaican New Year, or annual Tumour Board Conference in Barbados, and then the hospital will flood,or there will be a fire, or a nationwide shortage of gauze, or some other such crap, and LET’S JUST GET THE SHOW ON THE ROAD ALREADY!!! There are two tumors that have shown up in the previous site … and one new tumor on the other side of his head. Yippee, at least he’s symmetrical!!!! Now, let’s decide what to do about it!!!!!!! And, I’m using lots of exclamation caps to chase away the hysteria!!!!
Biopsying the new tumor is a strong possibility, but not definite. *IF* a biopsy takes place, the results might or might not affect the treatment plan, which is also undecided.
That’s about clear as mud, isn’t it?
Repeat radiation (same, but different) is very, very likely.
(major suckage)
Both (biopsy and radiation) bring with them their own set of possible benefits and probable concerns. No sense delving into them today, though …. Until we know for sure. THEN I will bombard you with a whole list of complaints and worries and fears. Until then, rest easy --- this post only contains whining, but lots of it!!!
Thank all of you from the bottom of my heart for your notes and e-mails and phone calls of support and kindness. I started out trying to reply to each one individually, but just got weighed down. My sense of organization and time-management seems to have taken a hit this week. I’m also (since a few of you were kind enough to ask) feeling a wee bit stressed. And cranky. This happens every time though. Or at least it happened the first time Blaine was diagnosed, and the first time he relapsed. And on a MUCH greater scale, when Kendrie was diagnosed as well. *THAT* time included early-morning awakening, crying in the shower, and perhaps even panic attacks, in hind-site. So really, what I'm feeling now is minor in comparison. I’ve never suffered from anxiety on any sort of regular basis, so I don’t know if that’s what this is. This feeling that I can’t concentrate, and am overwhelmed by daily life, and have a strong, serious, severe, CRIPPLING need for alcohol.
Kidding.
Maybe cigarettes.
No, kidding again.
I deal with my stress by eating. Currently, as I type this, I have a bowl of chocolate-chip cookie dough in front of me with a big-ass wooden spoon in it. I type a paragraph, then take a bite. Probably not good for my cortisol level, …. Definitely not good for my ass.
I worked really hard this summer and lost twenty pounds. I gained back eight on the cruise …. I’ve gained back at least three more this week. I know kvetching about my weight is shallow and insignificant and just plain silly at a time like this …. But come on, how many days in a row can I wear yoga pants because 1) the thought of getting up and putting on real clothes is overwhelming to me, and 2) by the end of the day, the waistband around my blue jeans wouldn’t fit anyway.
And I’m not really overwhelmed, that’s not the right word. It’s more like I can’t care --- SIMPLY CANNOT BRING MYSELF TO CARE --- about the pesky, little, exasperating, trivial SHIT that happens in daily life. (I KNOW!!! Can you believe it??? She’s STILL talking about herself, and her husband has CANCER, and she’s got to be the most self-centered person on the planet!!!) It’s more like I am …. Um ….. what’s the word? Annoyed? With everything in the entire world??? Sidetracked? Distracted?
Yes, perhaps “distracted” is the best word to describe how I’m feeling.
Luckily enough, I know it will pass. It passed every other time before, so it will this time as well. No need for anti-anxiety meds, or anti-depressants …. Maybe just a few bottles of wine, then I’ll feel better. Or even a good night’s sleep. It's simply taking me a little while to find my focus in the meantime.
So again, because of my distracted-ness (yes, it is a word, I just made it up) I feel the need to apologize if you’ve been kind enough to write and I haven’t answered. Or if you’ve called and I haven’t returned it. It’s as if, *mentally*, my wheels are spinning all day long. Then at the end of the day I look up and I’ve actually accomplished nothing.
Unless eating an entire bowl of chocolate chip cookie dough counts for something. Then I'm on a roll.
51 comments:
I know the feeling(s).....when my mother's kidneys were failing from her diabetes and she was on dialysis for a while and then the dialysis, while still effectively "cleaning" her blood was, at the same time, wasting her out (in other words, the "cure" was becoming worse on her than the disease)....well, I was going through a divorce at the same time and dealing with custody issues from my now ex and yadayayayada - I finally realized that I had to take each day, literally, one day at a time. This meant that I had to discipline myself to not look back (yesterday), and not look forward (tomorrow) - which is easier said than done. And while it was freeing in many ways, it could also be exhausting....all that to say - I know SOME of what you're going through. And I think cookie dough is a perfectly ACCEPTABLE coping mechanism - you go, girl! We're right here with you! And hug Blaine for us too, please......
I know it's not good to advocate drugs ... but when I was going through great distress with my mom and her Alzheimer's and problems therein ... my doc decided I needed what she called a 911 pill. Xanax - for anxiety. I took it ONLY when I felt totally out of control, and truly it wasn't that often ... but some days I had a hard time moving forward. It can be very addictive to some people, so you need to seriously discuss it with your doctor if you feel like you need an anti-anxiety med. It doesn't make you wonky, just allows you to breathe and handle what's coming at you a little better.
You eat that cookie dough if that is what you need to do to get through the day...You seem to be doing amazingly well given your circumstances...I would be curled up in a corner rocking!!!
Best wishes to all of you.
You can do this.
Meg
Milford, CT
Hey there are a ton worse things out there than cookie dough, so go ahead and eat up. And for the record, Yoga pants are quite comfy and you deserve comfy right now! sending virtual hugs through the computer and lots of prayers to heaven!
mmmmm...cookie dough....
That is pretty much the only thing that I read of that entire post..
Only kidding.. but it's deffinitly the only thing I was thinking about by the time it was over.. I would give anything for a big ol' bowl of cookie dough and a wooden spoon right now.. (don't you think eating cookie dough with a wooden spoon makes it taste better???)
Okay.. anyway.. sorry about all the crappy crappyness.. and that you have to do this again.. just remember to breath!
I think it counts for quite a lot. You focused on your goal and achieved it. Celebrate the baby steps, baby! I'm so sad that you have enough experience with this that you can monitor your reaction. But I guess that's a good thing. If the yoga pants can't keep holding you up, all of your cyber friends are here to take over. We're going to need a LOT of ice cream.
I am so sorry that Blaine's cancer has returned. Cancer is something I think your family has had more than it share!
Anyway, while I can totally get on board witih the cookie dough ice cream (I gained back the 15 pounds I lost last fall after my mother's cancer diagnosis-M&Ms were my downfall) but exercise for me is key to keeping my stress levels lowered (I had hurt my ankle prior to Mom getting sick). have you thought about kickboxing? I've never done this but I'll bet you'd love punching a bag and getting agressions out. Any exercise really would be helpful. I know you really don't want to gain weight (esp after working hard to lose the 20 pounds) and it will really help your mental state.
It's another pretty cruddy hand your family has been dealt and now to figure out how to play it. I believe that you will put together a good plan in the long run. In the short run if you are vertical a few hours each day and able to keep down ice cream you are doing something right! Might I suggest Blue Bell's Millenium Crunch? It's the best ever. In all seriousness I check on you almost every day and pray for you often. Now I'll bump up those prayers in frequency and duration. Sending hugs.
don't you DARE worry about making excuses for you attitude or your blogginess - you get a free ticket to the land of leeway. Geeze.
Not to add more to your plate, but can I suggest you carve out an hour a week (if you have it) to spend with a good friend, or a therapist, where you don't have to hold it all together and be supermom and superwife.
You can cry on our shoulders any time.
Why apologize to anyone. I hold you and your family in prayer. Unless someone has walked a mile in your shoes, they have no right to judge you. Go have some wine, red especially is good for you. We must always believe that God will never give us more than we can handle. But yet, sometimes we wonder how much we can take. Remember to FROG - Fully Rely On God! God bless Blaine, you and your kids.
If you seriously think that any one person who supports you (some by checking in daily on your blog) wants you to spend your precious time (be it alone time or family-time) responding to any of *us* you have another think coming!! Or you really are distracted & tired & overwhelmed, and not one person blames you or thinks you should be apologizing for that.
Eat the cookie dough & try to fit in a good night of sleep here or there.
If you find that the cookie dough ice cream isn't doing it's job well enough, might I suggest chocolate? It works wonders on my nerves (and no, don't ask how big my butt is).
But, it got me through a lot with Marielle's treatment. Anytime we went inpatient without warning (which was a lot) the call home would be, "Uh, could you pick up a box of Sees candy on the way over?"
Trust me, chocolate really does help.
Marie
www.caringbridge.ort/visit/marielle
I know exactly how you are feeling, well not in the cancer sense but every which way, so I am heading off here right now to whip up some DEATH BY CHOCOLATE, then I will be in heaven, I hear you running here Kriste...
Love, Marci
I wish I could write my feelings as well as you do. You always throw in something funny when you are so stressed.
Anyway, hang in there and I will think on the positive right along with you and Blaine that all this shall pass AGAIN!!!
Prayers for Blaine and your family!
Kristie,
I can't believe you would attempt to respond to the phone calls and emails, I sure don't expect it.
Don't worry about the pounds right now, worry about how good eating makes you feel.
Postcard Cindy
Kristie, I read your recent blogs and your blog intro and my prayers are with you. That doesn't even sound suffice for what you are going through and what Blaine is going through. I had been to Kendrie's site before and I think linked there for prayer request as well. There was a prayer request posted for Blaine and your family on our Message Board. I will continue to check back. Please post any prayer requests if you wish on the Message Board or email me also. I imagine you have quite a few people that you can call or email. Our prayers are with you, Blaine, your entire family. Love, Tracy Solomon
tmsol87@aol.com
www.ladybugkatia.com
I can only sympathize I know, having never been directly in this type of situation but I just wanted to tell you again how much help you have been to me emotionally with the leukemia diagnosis for my best friend's father.
They had a whole lot of ups and a discharge from the hospital only be to readmitted 24 hours later and now they aren't sure what is wrong with him but he's admitted he's close to just giving up. ugh.
I just had to say I thought this was hilarious
"And I’m not really overwhelmed, that’s not the right word. It’s more like I can’t care --- SIMPLY CANNOT BRING MYSELF TO CARE --- about the pesky, little, exasperating, trivial SHIT that happens in daily life. "
because my friend literally said the same thing to me not an hour ago regarding her and her family's struggle with her father's cancer.
wishing you all the best outcomes of all of this, the waiting, the tests, the treatment, and the next few moments so you can make it the next few days, etc
Kristie--- we have the same genes I see.... both in the patience and eating deparment :) :) I'll be praying that you get some rest, that insurance/dr. issues be resolved smoothly, that enjoy that icecream to the fullest and of course for Blaine's healing!
Hugs!
Dianna
Ditto to Liz:
Please Hug Blaine for us!
Don't worry about the cookie dough right now, you just do what you need to do to keep going. Just try to get through today and tomorrow will happen when it gets here. Let the little shit go, you have big shit to concentrate on. Prayers from Friendly Fridley are still going strong many times a day for Blaine and you.
Sheila in MN
You eat whatever you want girl, and wash it down with plenty of DDP. I'm praying for you guys.
love from FL!
Sending prayers. That's all I know to say.
No need to apologize or respond...we know that you are thankful. Just, please ask if you need anything. Love & prayers
You are an amazing human being with so many gifts. Sending Blaine and you lots of positive energy........
Whether you are being serious - or putting a sarcastic light spin on Blaine's cancer - before, during, after and again - just continue (as best you can) to be you. (Frankly when it isn't all about you - it is all about us & our comfort level with your state of mind - Sharing your sense of humor, honesty, and heart shine through even when you are bitching, complaining, just sharing/"venting" and you are also allowed a little vulnerable too. Try not to add blog pressure to your over filled plate of crap. When you can't be witty - just spill your guts without having to achieve your own personal standard of brilliance.
The above was sincerely meant for you - for Blaine -sending love, good wishes and a ton of patience. Hope Kristie shares her cookie dough or if you prefer that she stocks up on the ice cream flavor of YOUR choice. Distract yourselves this weekend with something fun....Warm regards & positive vibes...randy
Girl, I would have moved on to something much stronger than chocolate chip cookie dough if I was in your shoes. The fact that you are able to type, vent and eat that cookie dough is impressive at this point. If I lived closer I might just make you another batch of that drug and bring it over. Instead I can only say prayers for all of you. That's what I'll do and you please just let it out with us if you need to and we'll be here to listen anytime!
Praying harder than ever,
Anya
Kristie - you can "kvetch" about whatever the hell you want right now. You are entitled and we are here to listen. Kvetch all you want!
And, I'll chime in re: Xanax as well. It's the equivalent of having a glass of wine and it's not something you take every day. It's for those times when you find yourself so overwhelmed you are screaming at your kids, your dog, and everyone around you. It's the perfect - short term - chill pill.
You are in my thoughts and prayers.
Ann
Hey, under the circumstances if cookie dough is your biggest vice that's pretty darn amazing. Don't worry about the pounds - I gained 30 when my husband was diagnosed with cancer. If food provides comfort than go for it. As always you and Blaine are in my thoughts and prayers.
Aloha,
Jeri
I'm so glad you know you can vent to us here in cyberspace and be real and be honest. We're here for ya even if (in some of our cases) you have no idea who we are. We cry real tears for you and say real prayers. We may be thousands of miles away or just few but we're connected through this blog.
On a practical level, as someone who's dealt regularly with anxiety in the past, yes those are definately anxiety symptoms. You may even feel heart palpitations sometimes or irregular breathing. But I would say you definately have reason to feel that way.
Anyways, I'll be praying!
My poison of choice when my son was ill was a pint of Cherry Garcia ice cream with the tiniest spoon I could find, so I hear ya.
Just remember to take care of yourself tho', I think I'm paying the price now for the years I was caregiver. Keep up the exercise it will keep you feeling more "up" if not in soul but in body. And don't be afraid to get medication if you find your anxiety levels rising.
I was given the advice above when I was going through hell and I never heeded it. I wish I had.
Sending positive thoughts and prayers,
Blondie
Kristie,
Positive thoughts and prayers are moving through the universe in the name of Escoe.
All you have to do is "Just keep swimming, just keep swimming, just keep swimming swimming swimming...
Diana
Annapolis, MD
Devastating news. I am so sorry to hear about another relapse, as if you had not had enough already. And I just want to comment upon this:
"(I KNOW!!! Can you believe it??? She’s STILL talking about herself, and her husband has CANCER, and she’s got to be the most self-centered person on the planet!!!)"
I am glad you do. You should. Beacuse in the midst of all these things happening, in spite of all those years of family troubles, normal family troubles and cancer troubles and house business, and moving, and well, a lot of caring for others, a lot of fears etc. In the midst of all those things - you still have to be a person. It is easy to forget that.
Take care. Hope.
/Anna
Go ahead and eat all the ice cream you need--they don't call it comfort food for nuthin! The time will come again when you can concentrate on weight loss and your "skinny jeans" but this is not that time.
This is the time to do whatever it takes to get through each day and all of your many readers who love you and your family hereby and herewith give you permission to be distracted, to be cranky, to have PMS every day of the month and especially, to eat ice cream.
Praying!
Becky
caringbridge.org/nc/sarahsmith
have read your site since before it was here, when it was kendrie's CB site that you maintained. just wanted to pass along my thoughts to all of you for quick action by the doctors, success for Blaine, and peace and some calm for you as you keep your family running as, well, a family. and if cookie dough keeps you at least close to where you need to be, dig in!
-abbe
kansas city, missouri
Sweetie, the very fact that you are putting your thoughts into words, handling your kids and even making cookie dough instead of cowering in a corner sucking your thumb is a testament to your strength and determination. I have been in awe of you since I first 'met' you in 2005. Hang in there, all of you. You've got most of the free world praying for you all. Vickie(Travis AFB)
You and Blaine are in my prayers...this really sucks...go enjoy another bowl of cookie dough!
Kristie;
I don't know how to break the news...you are normal!!! I always find when I'm faced with some major crisis that all those little things that normally I wouldn't notice become annoying. Yeah, even the smiling greeter at Walmart is annoying. Don't they know that there's something big happening in your life? And why do things have to just go on...can't they all stop for 10 minutes and get it?
I have that feeling almost weekly when some woman I know has a fight with her mom and complains to me (I lost my mom a long time ago), or some guy talks about how his dad called AGAIN (yeah, lost my dad too), or someone complains about how their child doesn't get special treatment at school. That one kills me - I have a child with diabetes, and trust me when I tell you, most days he wishes he wasn't so "special".
So girlfriend, kvetch on. Most of us here get it, are in on it, and are willing to stop our worlds for a moment to get on yours to let you know that we understand. Yeah, understand, and care.
Hugs to all of you,
Kim
Take care of yourself, Kristie.... you're home, and you have family now to help carry the load (just wait til the kids realize that their grandma doesn't have to fly in with a load of dollar bills any more... that's even worse than no Seattle presents!). So, do what you need to to preserve your soul and your sanity as you enter the battleground yet again. Because it isn't just Blaine going in... you've been right there beside him. You might not have to endure the pain and the procedures, but you carry the fear and the heartache, as well as the totally up-ended life. Know that we out here in blogland are praying real prayers, crying real tears, and willing to do whatever we can from "out here". And even more, know that God is faithful, and He has promised to NEVER leave you or forsake you, and you can count on that!
With love and many, many prayers..
Oh bless your heart, you are handling all this with more style and grace than many of us could. You have had so much on your plate, it must be the size of a flippin Thanksgiving turkey platter. You take care and know that the masses are praying for Blaine. Hugs...
My thoughts and prayers are with you.
I am so praying for you guys! One day at a time...I know..better said than done.
"Now, let’s decide what to do about it!!!!!!! And, I’m using lots of exclamation caps to chase away the hysteria!!!!"
Kristie- that truly is the funniest thing I think you have ever wrote. So damn honest and freakin hilarious too.
No one, no one, can judge how you will cope/deal/eat tons dealing with this. Who the hell cares about 15 pounds anyway? In the long run, it just doesn't matter. Well, there is all that hype about health and stuff...but screw it, you do whatever you need to do. Hug your kids and your husband close and try to make it through this. I know you will.
the prayers have started in MN for you and your family! God Bless!
You are not selfish, complaining, or pity partying. You are like anyone else in your situation would be. You are sick of this shit!
Cut yourself some slack! You have every right to feel the way you do! I don't think it is at all selfish in any way. I say eat whatever the Hell it is you want if it makes you feel better. Know that your family is in my prayers.
Kelly
Cut yourself some slack! You have every right to feel the way you do! I don't think it is at all selfish in any way. I say eat whatever the Hell it is you want if it makes you feel better. Know that your family is in my prayers.
Kelly
you are entitled!
Just wanted you to know you've really been on my heart. Honey, I think *I* need some drugs to deal with your situation, so surely *you're* entitled to whatever helps you cope. Here's a hug.
Claire in Indiana
(((((Kristie)))))
You just can't get enough of that crap sandwich can you? I read your post the other day but just couldn't bring myself to write. I can't find the words. We just wanted to let you know we are sending you all Huge (is that spelled right? To late to think) hugs and prayers.
Can I stress eat with you? I am very good at it, as you can tell from my girth. Send on the sweets. And by the way, you don't sound full of yourself (er.....of ice cream maybe). Anyone who has delt with 1/2 of what you have deserves to have what ever they want. Something about walking a mile in your shoes comes to mind. I can't imagine.
Hugs,
Hugs,
Machelle, Mom to Elizabeth (ALL-Kids list)
Hey Xanax is wonderful.
Machelle
my doc decided I needed what she called a 911 pill. Xanax -
Sorry to read that Blaine's cancer has returned. Hopefully the testing speeds up. He's in my thoughts.
As a Canadian I would say it's not how long it takes to get a PET scan in Canada, it's CAN you get one. They are very hard to get at all here, if at all.
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