How to Cope - Part 1

The following sentence provoked my post today: Emotions are healthy and it's vital to understand each emotion. I've learned over the past few days exactly how many miserable moments in the past two weeks I had. I think this is all coming to head now because of the hopeful news we received at the last Doctor visit. Weirdly I don't remember crying much - if you can imagine. I was either dried up, everyone was sad enough for me, or something was lost in translation from heart to brain. I was upset, this I know - but I think what was different is that I wasn't sad-upset, I wasn't angry-upset (I'm a pro at these emotions), I was...I was...hmm I don't know - let's see if I can come up with the kind of upset I was by the end of this post. What I do know is that I was lost on planet SAY WHAT!? Surely I realize now that I was looking way beyond the bend. I was looking to far into the future and I was being forced to plan for it. If I had one more thought of having to pack up my house I would have had a break down. Mike took me off that ledge. Heck, I was looking into having a Living Will written up for Mike. I never WANTED to do this. Even though it's easy and everyone does it (sick or not) as a form of protection. I explain this emotion as another feeling of finality or inevitability.

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I have to brake into this post and tell you this horrific/humorous awake dream I had. There's a question on the living will that asks "Will you donate your body for use in medical science or education?" When I read this question I was frightened because we all know how much Mike likes to torture me (if you don't know Mike in that way, I'll have a post another time on all the way's he's tortured me in the past years. It's actually what has helped him all these years). As soon as I came across this question in the Living Will it occurred to me that at a not so serious point in Mike's state he would write an answer to this question. I imagine it to be something like this: Yes. I would like to donate my organs to medical science and education as long as it's for the Body World's exhibit so all my friends and family can come and see me. Think I'm crazy?? If you answered yes, then Mike doesn't torture you enough! The other day he told me to taxidermy him in an athletic pose and have him in a visible place for all to see. You see? He's sick, (sigh) he's Mike.

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The past few weeks have been about what happens when. I imagine all caregivers go through this at one point because it is in fact the when not the what if. Hearing the hopeful news on Tuesday made me feel that what if again. That's dangerous water to tread. I know. I've done it before. Ugh why am I doing it again? I keep asking myself that question but I guess it's like my sister-in-law said "it's something" it's not nothing like before Tuesday. Resolvent I have come up with what kind of upset I was and why I couldn't pinpoint it before. I had the emotion of being tiered-upset. That's it! I was tiered-upset. Tiered of trying to come up with options, tiered of having to see Mike's roller coaster, tiered of the thought of what the future would bring and I was ultimately tiered of being upset. It is weird how figuring and understanding your emotions really does make you feel better. Maybe it's because you don't feel so alone and you don't feel so crazy.

Do your emotions take you over? Try this. Write down what emotion your feeling and why. You may find a common denominator. Don't beat yourself up and on those bad days try and remember (as I will too)"caregivers find that the task of becoming a main support and care provider for someone else takes a huge emotional toll. It’s common for caregivers to experience bouts of crying, to feel panic, exhaustion, or other strong emotions. Don’t feel guilty – emotions are normal and it’s best to identify and express them".

In the continuing weeks I will be reading more about the care-giving role and how to cope. I will be posting to the blog research that I find. Next weeks topic: Common emotions that cause caregivers difficulties include guilt.

Signing off Missy style... MUAH!

Update

Every once in awhile you get a brake. You get a sprinkling of good. My advice is to take it and enjoy. I'm so glad to be sharing hopeful news today. Recently I've felt like the grim-writer. I thought my written words would be very different the next time I updated everyone on Mike. I had such a hard day, thinking and waiting for each moment to go by until his 3:15 appointment. I'm happy to say that tonight I think we can all sleep a little more soundly. Today Mike met with Dr. Staddon (his oncologist). Dr. Staddon was in agreement that Mike's tumors had grown since his scan in November 09 but that was not his focus. His focus was telling Mike and the entourage about a clinical trial going on in Europe that he thinks Mike is a good candidate for. He said they are using the treatment in Europe for treating another type of cancer. There is one person in the study that has Chondrosarcoma and that person is actually having success with the treatment. It is doing more then stabilizing the tumors, it's shrinking them. That's right, I said "shrinking them". This is the first time we have heard of this. With this good news comes the usual disclaimers: each person that has Chondrosarcoma is different. There is no person the same so Mike's Chondrosaroma may not react the same way as the person having success and there are no promises it will work. Also this drug has not yet been approved in the states, but Mike's Doctor is working on getting it there. It will be in a pill form and we are told has very little side effects. The most visiable effects will be that Mike's hair may lighten. The name of the drug is Pozapinb and Votrient.

When I heard this news today I was filled with a few different emotions. I'm not sure which came first but I felt like doing a cartwheel and I also had a feeling of "oh-here-we-go-again". I think I felt this way because I had been preparing myself for the worst, but this time the worst didn't come. I left feeling some sort of hope. Mike tells me not to get my hopes up...easier said then done...hope is all I really have right now so that's my story and I'm sticking to it. Hey..it's better then the alternative, right? I don't believe in miracles in this system, but I do believe in hope.

We will know more next week so as usual stayed tuned. Until then...take a deep breath.

Just what the Doctor ordered...

FUN! Saturday evening I went to the movies with some girl friends. Note - already I'm following my own blogs advice by taking time for myself . We had a delicious dinner at Tuscan Tavern (an itallian restaurant near our house, yum). Yet, as much fun Saturday was filled with, I was also out without my better half so with the realty of the week on the back of my mind made me realize exactly how dependent on him I actually am. After dinner we received the bill were I was once again reminded I'm horrible at math and can't add 20% onto anything not even if my life depended on it. If you think it's impossible to be that bad at math...think again. For me it's the shear fright that I may over or under tip the waiter. The simple sense of a decimal move fly's right out of my mind. From dinner it was on to the movies. What follows makes my heart skip a beat. It all went down at the ticket counter. During the moment the clerk handed me my ticket when I realized and said to my crazy, pathetic self "Who's going to hold my ticket?" Soon my mind threw into panic (yes over a ticket) saying "I'm going to loose it?! Who's going to hold my ticket"? Now you may be saying that's just ridiculous and I couldn't agree more. For goodness sake it's not the end of the world, I'll just have to think more clearly and place the ticket in a safe place until entry to the movie. But on this particular Saturday at this particular moment, it wasn't that simple. I almost wonder if the girls caught me as I was staring at my ticket meticulously placing it in my back pocket, taping my rear saying "ok, no biggie, your ticket's safe." You see for the last ten years and seven month's Mike is the one who hold's my ticket because he learned quickly I will panic and ask him a absurd amount of time's "Do you know where I put my ticket?". For all these years he's been in charge. I don't ever touch the ticket. Sure I've been to the movies without Mike before but I guess I reacted this way because I couldn't let go or put behind me all that had conspired just a few day's before. It all boils down to this : I am spoiled! After awhile Mike stopped waiting for me to tally up the bill and answered my phone calls when I needed help with the tip amount, he took the ticket's without asking and never lost one, he gets me popcorn in the middle of the movie and doesn't complain and he's the one who tells me what's going on when I can't understand the movie and has learned to accept that I always don't know what's going on in a movie. I didn't write this all down to be sad over myself because I realized that I'm going to have to be more independent. I wrote this down to share how absolutely fortunate I am to be spoiled by such a great guy.

I have to finish this post by telling you what I did on Sunday. We went to a John Mayer concert with Chris and Joyce (ol' friends). It was fun, filled with laughter and almost to many young teenies. I would be remiss if I didn't also tell you...I held MY OWN ticket!

What is normal?

So it's been more then a week since my last entry. That makes me think I lived a normal 11 day's in row. Whoot-Whoot!

ERRRRRRRRRR...put the brake's on. Yesterday, not such a "normal" day. At least not for the rest of the world. We did what was a normal for us. It started out with the normal pound of the snooze button and then a 3 car entourage to a doctors visit where we cried, laughed and had to think yet again about making a life changing decision. That's normal, right?? OK, now I'm making myself laugh. Mike said the other day "Who is going to make you laugh when I'm not around?". I looked at him and said "You don't have to worry about that. I think I'm the funniest person in this relationship". He agreed. Hehe. As you'll learn or already know making myself laugh, that's not hard to do. Back to the story. The truth - it was just 3 of us this time, but we each had our own "get-away-vehicle".

Here's a summary of what we learned at the Doc's yesterday. For the record this visit was with Dr. Asbell, Cyber Knife Chief of Cooper Hospital: She couldn't be nicer and is my favorite of Mike's 4 Doctors. I just love that this late in the game, I found a Doctor that I love She really took time with us and answered numerous questions. In his right lung he has a tumor almost 2 inches in size near his bronchial tube. This one would have to be treated with Cyber Knife and conventional radiation because it's more of a danger to do unconventional radiation so close to the bronchial tube. This tumor also serves as the most critical. Don't be alarmed as Dr. Asbell said to Mike with a strong Jersey accent "Honey, your not going to die tomorrow, you're not gonna die the next day, your alive". Easier said, then done. He has a few other's in his right as well (but smaller). In his left he has a few small ones and there is also one about 2 inches in size. There also appears to be some new growth since his last scan in November. The tumor in his left lung is a viable option. It is easy to track without fiducials (implanted 24carrot gold pins used to track tumors uneasy to see by x-ray) and would determine weather the cancer will respond to Cyber Knife Radiation Treatment. Here's the website information. Please look into it if you know of anyone suffering from Cancer. You may have the best option with this treatment http://www.cooperhealth.org/content/Cancer/CyberKnife_Center.htm?gclid=CPH3nYnA_p8CFaAO5Qod7kTAnA.

Stay posted for Mike's next update once we meet with the oncologist again in a few weeks. Till then or sooner depending on my need to blog think about what a normal day is to you. Or better yet, what is your ideal normal day? Mine is waking up to Mike. Anything else that happens is just filler.

DING! DING! DING!

Yes, as caregivers there comes a time when you want to throw in the proverbial towel. You want to hear the ding of the fight bell so you can claim your defeat. As the coach you look to the opponent and realize the fights not over, just the round so you have no choice but to send in your fighter...again.

We are not super humans. We are regular people who do regular things but we don't get to go about life normally. Every decision we make is thought out. It's like we are constantly training. We say "You can do it! You can fight this thing! Don't give up!" Sometimes we sit back proudly as we watch our fighter have a moment of adrenaline when they show cancer who's boss but on the day's when Cancer's won and we want to except our defeat and throw in the towel we don't. Why? Because as caregivers/coach's it's not acceptable. We take our fighter to their corner and help them shake it off. Then it's back to the ring, we look on as they touch knuckles and take more punches.

As caregivers/coaches we want to beat the cancer just as bad as our loved ones/fighters. We were born for this. I believe it takes a special sort of person to be us (pat on the back). It could be because we are not loser's we are born winners. It could be that we just don't want to except the defeat, that we want to keep on fighting...even though our fighters are telling us to call the fight. The truth is, the opponent, Cancer fights dirty.

So on those day's when the opponent is taking to his corner, take to yours. Take time for yourself. Let your fighter rest. Get your thoughts together, take a walk, watch a movie, grab a drink with a friend or live your life as normally as possible. That way when you hear the "ding" your ready to stand at the corner of the ring screaming and yelling ... "FIGHT! FIGHT! FIGHT!"

Making Memories

Thursday I took a w.r.og (walk, run and jog). It's amazing how much you can think about when your doing the best you physically can to keep your breathing steady and your legs from falling out from underneath of you. Mid walk I came up with my new mantra for 2010 "Take a good look at what today brings, make memories, anything beyond the bend isn't important and doesn't matter because you can't see it. Focus on what's right there in front of you."

Which brings me to the weekend:

North-east blizzard of 2010. What a weekend we had here in the nexus of the universe (NJ). I am not exaggerating when I tell you that every year, for the last 5 years, has been a disappointment as far as any kind of frozen crippling precipitation. Finally we were not let down, we finished the weekend with 18 inches of snow. Mike (my husband's) brother-in-law (Kurt) and sister (Christine) stayed over Friday night to get snowed in with us. Worked out well, Mike had a shoveling buddy and I had a cooking pal. Friday: before the heavy wind came we took a walk in the already accumulated 6 inches to Mike's in laws house just down the street. On the way to their house we packed in as many snowball fights as we could. There were a few attempts at shaking snow heavy branches above one another head's so that the victim would get hammered with falling snow. The guy's ganged up on us a few times making Christine and I run in a serpentine pattern (helpful info from Land of the Lost). Do not underestimate the power of the serpentine pattern. It works! When we got home from our walk it was nearly 11:30pm. My eye's couldn't believe it. After the week we had I didn't feel an ounce tiered. Saturday: we woke to the sweet aroma of coffee, sizzling bacon and cheddar cheese eggs. Is it just me, or is there something to be said about a BIG breakfast on a snowy day? Yum! When the boy's weren't outside shoveling snow and in between our restful movie watching we would eat and play games. Saturday night it was off to Norma and Waldt's (Kurt's parents house) for chicken in a pot...another yummy meal on a cold day. Sunday: led to more rest, more food and more friends.

What did you do this weekend? Did you roll over in bed after a cozy night of sleep and take a good look at your mate and think "today we sleep in together because we can"? Did you slowly make your way to the kitchen and cook a large breakfast just because you want to remember that specific morning's breakfast for year's to come? Or did act like a kid again and have a snowball fight during a blizzard? Did you take a mental pictures of the love you were surrounded by and recall the reason your surround by that love? I DID.

Doctors don't ALWAYS have ALL the answers...

Yes, they make the big bucks. Yes, they have the fancy degrees but NO, they don't have all the answers and surely if you're going through this or have gone through this you're learning it the hard way. You sit in a doctor's office expecting them to take your loved one's life in their hands. When in reality, they're just glorified therapists. They can tell you what they "think" you should do. You'll desperately ask the question at least once or twice "What would you do, if it was you?" As a response you'll get "That's hard to say". Not exactly what you want to hear, is it? You'd rather the response "I've waded all the pros and cons and if it was me, if it was my loved one I would ______.". Am I right? Isn't that exactly what we've all been through? What we've all wanted? Sitting in the consultation room is like sitting in a sauna on the game show Deal or No Deal. Your hot (literally and physically), your uncomfortable and when you glance to the side you see a red button covered by plexi-glass. The choice is yours, the decision has to be made. To push the button or not. You go over the pro's and con's one more time. Looking desperately to your audience for any subtle hint. Any answer...anyone? Finally the question...deal or no deal? Do you push the red button and take what's offered? Or do you push the box closed and exclaim "NO DEAL!" ?

After 2 year's (yes, it took me that long) I realized Doctors don't have all the answers. They just have the medical facts. Let me be clearer. They just have the medical facts of the then and now in their own small bubble. Not the future. Am I blaming them? I'm trying not to play the blame game but if you don't blame them, who do you blame?

Moral of this blog. Do your research. There ARE options out there for you, even if the Doctor is telling you there isn't. The Internet is a blessing and has a world of information on it. Research people, do your research! If you need help don't be afraid to ask. I'm sure you know someone who's been saying over and over "If there's anything I can do, please let me know". Well, here is their assignment. Trust me, they would love it and it takes the ball out of your park.

Hot Serving of Reality

As I sit listening to Michael Jackson's "Make a Change" I realize just how apropo that title is. It's time...time for ME to make a change. Okay, so maybe it's not a change. It's a revert of simpler, normal day's when I had time to write my thoughts on paper and express myself better then I do verbally. Except this time I'm doing it 20th century style...blogging. I wonder what those in the 18th century would have thought of generations later doing away with the quill pens and home made paper? Simply relying on a computer to hold our exclamations, periods and question marks. IPad here I come! Side note - I feel like Dougie Howser, MD.

So why the title Sara's Guide to Survival? Simply put we are all surviving or trying to survive each day. It's not easy. For me it's particularly not easy because my husband of 8 1/2 year's has been sick with cancer for 9 years. He's been through a lot and as I continue my blog I will catch you up on just how much he's been through. For now...it's about getting through today.

I started the day with a bad headache (not a good start), puffy eyes and the feeling of a small yet barreling train running over me while I slept. Agreed, down on paper that sounds a little dramatic. I digress. It's not the first time I've felt like this and won't be the last but it just about sum's up every six month's for the past 8 years. We are given bad news, we are sad, we cry, we talk about "it" and then just as fast as a mosquito inconspicuously has landed to bite we slap it away hoping it didn't have time to make it's mark. Then undoubtedly the next day you have a large, itchy and annoyingly red spot that can't be ignored. So what else to do, but deal with the news. I hear you, saying, get to the point. Well...really long story made long. My husband has metastasised tumors in his lungs from a cancer called Chondrosarcoma. It originated in his shoulder blade (more on my next blog of how not to trust everything a doctor says). Yesterday we were told there is a nodule almost 2 inches in size swallowing his bronchial tube, that one day it "could" ( I quote the Doctor loosely) cause him to stop breathing and his lung to collapse. Yeah that's right, we got a hot serving of reality. This of course won't happen tomorrow, or the next day or maybe not even within the next year but it WILL happen. I'm not really sure how anyone else deals with this sort of news, but for me it's answered with prayer (1st course), a heaping of carbohydrates and a Mojito, or two.

More on my thoughts tomorrow. Until then think about it. How do you deal with the highs and lows of life? Do you stuff your face, until fullness is your only feeling? Do you cry yourself to sleep just so you CAN sleep? Or do you hug your partner and say, it's all going to be okay and then wait for someone to give you the answer of how it's all going to be okay?