Cancer Club for Mankind

Hi there and welcome to the club. You might be surprised to learn that our club grows by over 3,400 members a day. Most people join against their will…for a few, membership was optional, but they joined anyway…..odd, but true.

As a new member you get to experience things like, fear and panic, uncontrolled sobbing…. waiting for things like test results, facing your mortality etc….

The next phase of membership typically requires loss….loss of your hair, loss of your lunch, loss of body parts or organs…
Other losses include loss of control and loss of pride. These last two can actually be seen as positives so be sure to consult with some of our longstanding club members on the benefits of the last two.

While a club member you will receive lots of little brown prescription bottles, beautiful flowers and an amazing number of cards. You will receive a surprisingly informative lesson on your blood and the secrets it contains…and more hours in your bed then you thought possible.

You will also receive many life lessons. These are very helpful and we suggest that while you are spending so much time off your feet, that you take advantage of that special offer.

We also ask of our club members that after you have been with us for a while, you offer your new found knowledge and encouragement to our newer members. This is an important part of healing for both you and the newer inductees.

We are sorry about your club membership but will be praying for you daily.

Cancer Club for Mankind

True blood

Anemia (pronounced /əˈniːmiə/) What? How do you pronounce the upside down e’?
It would be more helpful if written (uh-nee-me-uh)….
From the Greek “anaimos” meaning bloodless…or the new Latin meaning without blood. (I always like to include a little lesson for those home schooling moms )

It is a new experience to have to consider your blood on a daily basis. It is a very telling thing…there are lots of secrets revealed in the blood….past, present and future. Blood is life and energy…. It sustains us…healthy blood feels very very good inside. Tired blood…not so good. I am right on the cusp of needing some healthy blood…..I tried the ol’ eat a banana trick but I don’t feel any perkier. I think it’s time for the big guns…molasses, raisins , molasses raisin cookies, gingerbread….oh my….this could be bad.
Anyway I am tired….very tired….and I am tired of being tired. I really hate cancer. Tonight I am going to drift off to sleep thinking and pondering about how important “the blood” is to life, physically, emotionally and spiritually....hopefully for longer than a few seconds...either way I think it will be a good use of those few seconds.

It has to be said

Ok, sorry....I have to say "something" about Michael Jackson today. Sorry sorry sorry...It's just so weird to have him gone. I suppose for you older folks it would be like when B-B-B-Bing Crosby died. No? Ok, it was just a guess.

Anyway, as far back as my music memory goes, Michael was there....that's all I am saying....it's just weird...

Ok I'm going now...have to download some music...nothing by Michael Jackson mind you.. just a few other songs....

20 years of marriage

Today is my 20th wedding anniversary.

Happy anniversary Chad! I think you got more than you bargained for....Thank you for your strength. I love you.

Last week's appointment

As I was looking back at what I have written over the last few days I realized that I didn't really finish telling you about my appointment last week.

Well, let's see....I told you about the anemia already....it was raining, my blood pressure was a little high (oh really?!) I drank hot apple cider while I had my IV drip....I also learned 5 new ways to beat stress and a new chicken recipe.

I have always felt bad about having to ask Dr. Lee not to let Digger Debbie, one of the IV nurses, touch me again...but again that was confirmed as she couldn't find a vein on the woman who sat down next to me...who had juicy blue veins, the width of a drinking straw. She's very nice, but....well enough said...

Let's see...what else.....I think we decided that the Tamoxifen was working. I mean you can't really know until you have a scan, but things seemed very status quo and that is better than not "quo" or less than "quo".

Oh and Jean was there, from Radiation, and she asked about Forest and she even went to the computer to look up his pictures, and she smiled a lot and laughed with me and told me how she looks for my apt days and always tries to see me when I am there....and I think all her joy made a few of my cancer cells die.

So all in all it was a good day....I can't believe I just said that, but if you break it down it really was a good day. I think the smiles did more for me than the Tamoxifen that day, but I will continue to take them both!!

Random thought

On top of all the other issues to deal with every day, this muscle spasm in my neck is just....arrrrggghh...it's just....rrrrrrrr.....(insert descriptive word here)....
annoying. It is uncomfortable and makes it hard to stand, sit, sleep, drive, walk, talk, back out of the Safeway parking lot, keep my arms at my side, type, gripe, and drink coffee...to name just a few.

But............when I woke up this morning all I could hear were birds. It was amazing. For a few minutes I forgot about my neck and just listened to the birds and the breeze and the wind chimes.

Ok, now I can go back to whining about my neck....

Spots

Spots….a very adorable name for your child’s first dog or a very traumatic thing for cancer-in-your-bones people.

Do you have any spots that hurt? Where are those spots? Are they new spots….old spots…have we radiated those spots before? Does the pain in those spots come and go or does it persist? Would you say those are normal 45 year old woman spots ? Are they muscle spots or bone spots? Were those spots in our last scan of your spots or not?

Yesterday I wrapped gifts for Father’s day and my mother’s birthday. The only non-Christmas wrapping paper I had was covered with spots! Good grief…such a silly thing but some how it changed my focus.

The thought came to me that if you fill in the “o” in hope that would be a spot too.

Oh I’m not saying that I will be good at it… and I'm not saying it's not a bit corny....I’m just saying it’s a choice and it’s the one I made today.

Bananas and irony

First let me start by apologizing to Forest and Holly for blaming them for my fatigue...well, them and Chad as he has been on a real snoring jag the last few nights....

I just arrived home from the Dr. and my red blood cell count is low aka anemia. I was looking online for foods I could eat to help my body make more red blood cells so it looks like as soon as I am done typing this I am off to the kitchen for a banana. Tomorrow I will work on other foods but tonight I am tired.....ironic huh?

Seeing the Forest thru the trees

(Photo courtesy of Suzanne Fogarty www.suzannefogarty.com )

This little guy is Forest....Forest Jump...no I did not spell that wrong. His name is really Forest Jump...I know because I named him. I named him because right behind him is his mother...who belongs to me.

For several months last year, when I was undergoing radiation, my dear friend Ruth very kindly agreed to take Holly. Holly and Ruth both were surprised one day by a visit from the neighbor's stallion.. (while the neighbor was away.) His visit required him to jump a few fences....hence the name.

It took 11 long months of waiting but he finally arrived....he arrived to the sound of crickets and frogs and warm night air and the soft nickers of his new friends in the barn that have been waiting too.

He is a friendly, social, curious, stunning colt who LOVES to have his hiney scratched and if you are standing just right, he will gladly return the favor.

I love little Forest...I really love him...it was a long wait but I was able to "see" Forest thru the trees...the trees of more radiation, two failed medicines, countless scans, and many many failed IV's....

Thru the months I thought of Forest... and hoped for Forest. There was hope with Forest....hope for his health, for Holly's health and for my health so I could be there to see him come in to this world.

Forest Jump....you're awesome.

Sleeping like a baby

It's 2:30 in the morning. Joe is in bed asleep. He asked if I would sleep in the twin bed across from him. Of course I said yes. It's been a long time since I have sat and listened to one of my "babies" sleep. I remember at first it was an anxious thing...."will they take another breath?" Then it was the sound of peace and rest.
So tonight I sleep with anxiety draped over me like a blanket. The fluid on my lung did contain cancer cells. The cancer is now officially outside of my bones. Translation: not good.....
The Dr has put me on Tamoxafin and he is checking for it's effectiveness in 3 weeks....that's not a lot of time.
Thank you all for your prayers.

Bones

The third time is a charm so "they" say. I think this saying started in the early 1800's and it referred to the death penalty...if they tried to hang you three times and it didn't work, then you were set free. What does that have to do with me you ask? Absolutley nothing....now you can all say that you have learned something by reading this!
So these past few days have been quite hard for me. Hope, after first hearing of the cancer, is easier to muster I have learned. After the initial "blow" you get your gear on and prepare to fight this thing...the hope is right there, that you will win this battle and all will be well again......Taa-Daa! Then you find cancer won round 1....so you go back to your corner, wipe your brow, spit, and wait for the bell to ring for round two. It's a little tough at first but you feel the surge again...."this is it, we got it now!" and you come out swinging again. This time you get a solid blow to the gut and cancer wins round two. You stumble back to your corner and there is a little blood , lots of sweat, and you're tired. The previous blows have taken their toll and round 3 seems so much more overwhelming......there is a spec of hope somewhere inside, but I believe it is more the will to live than hope itself.

You blow on it, add more tinder, blow some more and hope it will return to the flame it once was all those months ago...but it just doesn't catch...it smolders thick and dark. So you look around you, try hard to find reason to believe there is still hope out there, that it is more than just you trying to think positive....and then you read the story of the bones......

Out on the plains..in the scorching sun are bones....a lot of bones. They are seperated and strewn everywhere, bleached by the sun. God says, "watch this I will bring you life" The bones began to rustle and come together....then muscles and skin and finally breath. There stood an army.

I don't think you can have less hope then after you have died, the vultures have picked you clean, your bones have seperated and you are strewn all over the desert......I think hope pretty much stops there.......but NO it doesn't.....
That is what I have learned by reading this.

Frazzled hope and tears

So the Dr. says that the news is not good. The cancer has continued to spread in my bones. There is quite a bit in my right hip and femur...enough that he is concerned about the hip shattering. The left shoulder is also full of cancer and the cancer has cracked my shoulderblade.
There is also some on the cartiledge along my voice box and here and there in random little spots.
My right lung which had a little tiny bit of fluid in it for a year or more, now has quite a bit of fluid....

Soooooo what to do now....
first off the second medicine did not work....so we move to medicine #3 and hope

Radiation on my right hip and left shoulder start Thursday and I will only need 5 treatments as they are ramping up the dose.

I had more than a litre (half a big plastic bottle of diet coke) of fluid drained off my lung today and there is still more in there...but the Doc had them stop at a litre and then some for pathology.

And not to whine but they had to stick me 10x's just to get the IV in.....ugh!

The results will be back in the next few days.....

Other than frazzled hope and tears, that is all I have for now.

If you have a question ask......and thank you so much for your prayers

Thunderstorm

When I was a little girl, I lived in Michigan for a while. The thunderstorms there feel like they are happening approximatley 6.24 feet above your roof. I have never liked thunderstorms....they still scare me. They send me to my room and I pull the covers over my head and sing "Mary had a little lamb" to myself to help drown it all out.
One night in particular, my grandma came to visit us. She was sleeping on a pull out couch in the basement ( I am sure it was nothing personal). I was about 3 and grandma would take her teeth out at night which was cool but creepy at the same time.
On that night we had a huge thunderstorm. I was afraid to wake my parents because I thought for sure they would send me back to my room. So I ran to find comfort in my grandma's bed in the basement.

AHHHHHHHHHHHH. There she was...warm....and she always smelled so good....she smelled like expensive lotions and listerine. She threw the covers back so I could get in with her and we curled up together and I slept. I don't know if grandma slept or spent all night praying....she was amazing that way. She was the picture of God for me that night.

Right now waiting for the results of this scan is my thunderstorm....it feels big and loud and right above my head.....I want to run for comfort.......... So I go to that night....I think that night happened on purpose......I think it happened so that when I was 45 I could remember and instead of grandma being there....He's there...and I am warm and safe and the thunderstorm is not so scary anymore.

......Or would you rather be a ..............?

It's 2:54 am and I woke up with a song in my head. No, Chad woke me up while the song was in my head...I always feel you should give credit to the right ppl.
Anyway, do you remember the song from Sesame Street:

"So would you like to swing on a star,
carry moonbeams home in a jar,
and be better off than you are,
or would you rather be a _________________?"

Then they would usually pick an animal and describe it...........

So I began to wonder what I would rather be. So I thot for a bit and decided that right now, I would rather be a fish. Here's why:
Fish are for the most part stupid (that seems like it would be a relief sometimes)
every move they make is graceful
they are not afraid of the dark
it's very quiet underwater
they can hide out under a rock
they can ride on other fishes backs
and if they can avoid being eaten, which I suppose is a risk for all animals....just watch channel 36. or Man vs Wild......they live a pretty peaceful life.
Their neck and shoulders don't hurt like mine do now,
and they don't have to have a scan on Monday.

Just my thoughts.
I am going to check if the grizzly stopped snoring.

Scared of heights

So I am in the big chair in the living room in the sun....the house is empty for the first time in 4 days and the only thing running is the refrigerator and the toilet in the powder room (just a sec, it's driving me nuts)...OK....the thot just came to me that it would be lovely if every problem could be fixed by jiggling something...ohhhh I could run with that but I must stay focused.

So the time for another scan is fast approaching. I think this time there will only be the one...the PET CT.....the scan of scans....the fasting, IV'ing, injecting, sitting still for an hour, drinking the room temp.grayish purple glop, then going into the circle thing for 45 minutes while iodine mixes with your blood and makes you feel like you have wet yourself, scan. It does give you the full story however....head to toe if there is cancer in there it glows. It catches even the earliest stuff....so for that I am grateful.

This scan will let us know if the new medicine has worked. What a joyus or horrible day that will be....so therein lies....well, lots of things.

I know I want to feel peace over this....I mean it would seem dumb not to want peace about it. But it’s like I am standing on the edge of the Grand Canyon and peace is about 28.5 inches away from the edge (the exact length of my arm plus 1/4 in.) and I just have to lean that little smidge and a voice echos thru the canyon that everything will be ok and I can go ahead and grab it but I still can't decide if it's worth the risk...then next thing you know the bush next to me catches on fire and it begins to speak and says "Laurie, everything will be ok...take the peace" and I STILL don't know if I can.....and I look down and see that the river below has parted and there are some campers that are walking across the dry river bed and the voice says..." How about now?" and I still am not sure....

So because I am soooo scared of heights, I am going to close my eyes, lean a bit, hope I measured my arm correctly and reach for the peace. Yikes!

How are you....I am not fine........

Quite a few people have asked in the past few days "where I am at" right now. They want to know how I am feeling physically and emotionally etc...I thot' about it for a bit and I can't say fine cuz that isn't true..... and just to prove it...here are the top 10 definitions of "fine"


1.of superior or best quality; of high or highest grade:
2.choice, excellent, or admirable:
3.consisting of minute particles: (ok this is debateable)
4.very thin or slender:
5.keen or sharp, as a tool:
6.delicate in texture; filmy: filmy...yuck
7.delicately fashioned:
8.highly skilled or accomplished:
9.trained to the maximum degree,
10.characterized by or affecting refinement or elegance:


So then I thot' "If you are going to ask Laurie a question, you are going to get a Laurie answer."

YOU: "Hey Laurie, we haven't talked in a while, how are you doing? I mean how are you feeling and what is your pain like?"

ME:"Thank you for asking...that is very thoughtful. Right now I have some pain in my neck and shoulders. I think it is caused mostly from the motion I make when I throw hay over the rail to feed the horse. Aleve helps sometimes but not everytime.

I feel a little confused about what to do next if the scans don't turn out well. I am still in a punching match with myself over this issue (cancer) being totally out of my control. I mean why have a "plan B" if "plan B" offers you no more control than "plan A" did? BUT......having a "plan B" makes me feel like I have something to do....but if it doesn't matter then it's all been a waste...but if it makes me feel productive then has it really been a waste?....feeling productive has it's benefits doesn't it? But if I can't control it with either plan A or B then ......well, you see my dilema.

I feel somewhat hopeful that the scans are not going to be wholly bad...but that is soley based on no more giant lumps appearing and pain not getting worse in general.
I love the changes that have taken place in my family because of the cancer.........that's a long-ish list so I will leave that one as "by request" .....if you want any more details you will have to request them via e-mail or Facebook.

It's been interesting to ponder and wrestle with the trust issue....I hate it but I love it....well I don't LOVE it like Valentines Day love it....I just see some benefits....maybe I don't love it.....I will have to keep thinking about it....

And as always I am totally humbled by how many people are praying and then some......I will never be able to wrap my irradiated mind around that....that IS a miracle.

So that is "how I am" I guess...for now....I have a regular apt the end of Feb...IV, Faslodex injection, "no estrogen" tummy injection and lab work....let's hope there is someone else besides Sahid (a guy around 25) to pull the skin on my hip (which is more like "not my hip but lower"...emphasis on but) for that Faslodex injection....that's another story you will have to request if you want more info.

Scans in March...not sure of date.....Thank you again for everything....all of it...prayers and more...

Let go of the rope

So I went back and read what I wrote.....I guess I had an itchy trigger finger....you see, in an effort to keep my thoughts to one hundred words or less I think I missed the point of the point.

I realized that I hadn't come to the point yet where I could "let go" of the cancer knowing that my worrying about it could not add a day to my life....and the letting go is something I thought I WAS doing until I realized that I wasn't doing it....hence the hypocrite thing.....it is also something I easily tell others to do as I now realize that I was never really doing it myself....again.....hypocrite.....

But it's not about that...(well kinda, and I am sorry about that....hypocracy is bad.).....it's about letting go of the rope when all my other instincts tell me to hang on as tight as I can and that "letting go" will not be the end of me even tho every synapsis in my brain says it will.
That was the point of the point.
Thank you for still being willing to listen

Dark and puffy

These past few weeks have been very dark ones for me. I have felt guilty about that...the star of Bethleham....the hope of the nations...jolly St Nick...despite that it has been dark...will it be my last Christmas? Is the new medicine working?
Two big issues have come up lately....

First...am I a hypocrite? I think maybe I have been.....(well so are you!!!) Ok, maybe you aren't but I feel better thinking you are because I didn't think I was until now. I have always said I TRUST in God but I really really really really realized that I kinda didn't truly TRUST Him. That has to change. If I really trusted I wouldn't be so scared of this cancer.

Second: the first takes conscious effort and that is hard....for me....I don't like deciding what to have for dinner...I don't like finding time to take the car for an oil change...I want it just to happen....

I believe it is extra hard when you are struggling to believe what you are trying to get yourself to believe....."if you let go you will be ok"
Ok so I am hanging on to a rope that is strung across a huge deep canyon...someone who resembles a polka dot down below says.."let go, you will be ok"....this is what it feels like to me.

So I rung in the new year with 45 minutes of crying...followed by morning after puffy eyes....which made me cry some more because I feel like I live in a petrie dish as it is...and I had to put my hair on, and I burned myself and my left arm doesn't lift up past my shoulder and .............thru all of this I will trust? I mean I WILL trust!!! I will I will I will....I hope.

Perfect fit

This is not a picture of me but necessary for my blog today. I have been pondering this one for a while and I think I am finally ready to spew it out.

I can't say specifically what part of this experience has had the most impact on me, but I can say that the radiation treatment has been the most metaphoric. It is when I am on that table that I feel "spoken to" the most. The most recent was last week.

Each radiation mask is individually molded to fit YOUR face. It starts as a blank and they heat it up and stretch it over your face making sure it has contact with every part of your skin...eyes, nose, lips, chin...unless you have an evil twin...no other mask will fit you. Then they place the markings on the mask where the radiation needs to be directed and how much.

So it all started when I laid down on the radiation table last week and they started to put on my mask. For some odd reason (oops maybe I lied too much and my nose grew..I just thot of that...dang) anyway, for some reason it wasn't fitting right. I squiggled around on the table trying to wedge my nose in the nose spot and my chin in the chin spot but it just wasn't happening.

So with the milli-nano space where my lips were, I slurred out "I think this is someone else's mask" I mean Laurie is a pretty common name and there is bound to be another Laurie with tumors in her skull right? So they quickly unlocked the mask from the table and double checked. It was then that the speaking started.

From the time I was a young girl I felt I would never measure up...I would never be cute enough, smart enough, fun enough, make good decisions....you name it...so in an effort to compensate for that I would try to act differently around different ppl...I thot that as long as I didn't act like "me" then I would be ok. Mask after mask after mask I wore in an effort to be accepted....liked.....even loved by friends, family...even people I had never met.

Laying on that table that day I realized that no one else's mask is going to fit me but mine. If I try to put another mask on it is only going to cause me discomfort.....it will never fit me....for me to heal I have to be me. All other masks are thrown out and with my Laurie mask on the healing continues.

Sniiiiiiiiffffffff

Tonight for the first time in a while I cried.....really cried....sloppy, runny nose, snarfy overflowing tearduct crying kind of cried. There are so many reasons why this happened...some very good and some rotten, some revealing and some secret and some I am sure, directly related to chemical menopause.

It felt so good. I mean really good. The tears really wanted out and now that I am back at my folks there was no reason not to let them. With my dad playing the piano soft and low upstairs it was almost like a scene out of a movie.....kinda cool.
Well, that's all....I cried....big news....I wonder where our tears are stored?

Shave and a haircut-2 bits!

I have been sitting here trying to think of how to start this email....but this is all I can come up with...
MY BROTHER SHAVED HIS HEAD!

My brother shaved his head and I cried..... he never said a word, didn't ask me, never once mentioned that the thot' had entered his mind... he just did it.
Now don't you dare get caught up in "well, he's a guy and it's easier", because....well because he IS a guy and it IS easier.... but that is soooooooo beside the point, not even near the point, so far away from the point for me that I couldn't see that point if I used the best telescope invented....HE SHAVED HIS HEAD!
For the next hour we tried on all the wigs and took pictures and exchanged hats and hair etc ...it was hilarious. I will send a pic when I get them. He shaved his head and he made me laugh and he made me cry and he loves me.
Man I love that kid!

PS ....special props to mom and dad for jumping in on the pictures!!!! Let's just say mom should never be a redhead and dad should NEVER curl his hair!!!!!

Knee jerk reaction

I woke up to fog this morning....lots of fog. Pretty normal for this time of year...and for the street we live on...weird how this street seems foggier than most others in this area....maybe there is something we are not getting...as a street I mean...nevermind, if I go there I will never get this written.

I have just been thinking about this one radiation session I had last week. At the time it was happening, I was thinking "this means something more" but I am still trying to put my finger on it.

This is what it looks like when you are having treatment...the table is only as wide as your body, hard as a rock, the mask is fastened to the table and this giant "thing" rotates around you and you lay perfectly still. Up until last week I was only having treatment to my skull...this meant I did not need to put on a hospital gown...just street clothes, the radiation mask and I was done. Last week they added T1-T8 to the list of "fields" that they are going to treat...which translates into hospital gown...so here comes the part where Laurie lays it all out there, and it ain't easy...

As a result of the second radiation my hair is falling out...stupid pride is really making that a toughie for me...so I have been wearing hats...soon a hat won't be enough.

I went in last Wednesday for my apt. and took off my hat...what hair was there was mashed flat...I laid on the table and on goes the mask...then off comes the hospital gown....yikes...there are things there I don't want ppl to see....situations that you naturally want to keep to yourself...there are guys in that room...
With my head stuck to the table, hair dropping out, exposed to the world, I had to lay there, resisting the urge to cover myself back up. My arms were free and at my side and it was all I could do to keep them there.....a war beetween knee-jerk reaction and self control..

It was then that the thought came to me "this means something more". Half bald and half naked I laid there with zero pride....wanting to hide something...my balding head, my entire torso...my anything.....COVER SOMETHING UP PLEASE!!!!!!!
I still have more to learn it appears....more to learn about myself and trust and Love and why we are loved....

The ten dollar lesson

The last few days have gone from hope to hopeless...from numb to hurt to numb again....from anger to sad to why....all normal I suppose, under the circumstances....

But as it all starts to level off I notice that it feels different this time....another layer has come off....I have been trying to put it into words for the past 24 hours.....a way to describe it so it makes sense.

I guess it's like reaching in your closet and putting on that coat you haven't worn in a while. It's warm and comfortable and you are glad you still have it....then you stuff your hands in the pockets to warm them and find a $10 bill you had no idea was there....unexpected revelation....wondering what you are going to do with it.....


Just when I thought I had learned a bunch of stuff from the surgery, radiation, mask, scans, pokes, nausea, etc...the people, prayers, and all that love in action....I think I just learned more. It's very intangible but very real.

It's about how I look at things and people....where my value is...what to do when given an option....it's good...it's important...but it's so crappy that it takes so much to get there. I want it but I don't...you know? I am trying to decide if it's worth it. I think it is, or will be, but I am right in the middle of paying for it so maybe now is not a good time to ask...the bill just came in the mail so to speak...what am I saying "so to speak" for? It did....really....wow that sucks...I just realized that I am not only paying for these lessons physically and emotionally, I am really "paying" for these lessons. CRAP! So much for the $10 bill I just found.

Thirty three percent

I haven't cried this hard in a long time....the results of the PET scan showed more cancer and the bottom line is that the medicine just didn't work. I am on a new medicine..but it will take at least two months to find out if it's working or not....meanwhile the clock is ticking...

The Dr gives this drug a 33% chance of working...
He's not too hopeful...next treatment is chemo but get this....it's chemo for life.....not exactly the grand prize....you see if you don't take hormone therapy then the chemo is just a finger in the cancer dam.....no chemo and the cancer grows again because there is nothing to tell it not too.

I don't know much about alternative treatments....never really been an alternative gal...well, maybe a little....but I'm open.
Give me your best shot? Funny how our minds open when life begins to hang in the balance.

Actually it's not funny...not the least bit funny....it sucks! I am so angry right now, angry and sad....very very very sad.....
The promise was when everything fell we'd be held....

No morning coffee????

Today was PET scan day....a PET scan, as I so conveniently forgot, is all the worst parts of all the scans rolled into one scan. First there is the fasting...no eating after 7 the night before, no morning coffee, NO MORNING COFFEE, then the IV, then sitting manequin still for 1 hour, then drink the white fruit flavored congealed chicken fat beverage, THEN iodine, THEN FINALLY 1 hour in the tube.

I think they call it a PET scan so it lulls you into this happy fuzzy feeling of soft furry kittens and puppy kisses......I think they should call it BAD scan, or Long Boring Gross Scan, or Poke and Puke Scan...something that more acuratley describes the true scan experience.

Either way it's done and it was done thoroughly and the results come tomorrow. With no cancer spreading anywhere else in the bones except my bonehead, the radiologist says that it is unlikley that it has gone to soft tissue....just a bit worried about my old friends the liver spots from last scan....I spent all day in the tube wishing them away....and I invited a few real friends in the tube with me. I know one made it for sure.

Setting the bar low

Well I met with the radiologist today after my "zapping". That is standard procedure to meet with the Dr once a week during treatment. She and my mom slipped into her office to view my bone scan from last Thursday, while I sat in the denial chair for a few minutes more.

Then I heard my mom from down the hall..."Laurie.....good news.....it' hasn't gone anywhere else.....it's only in your head!" OH it's in my head alright!! But that's the good news for the day....the bar is set pretty low these days. I'll set it as low as I need to to get some good news. I was so relieved that I could hardly walk out of the office...kinda had jello for legs.

Tomorrow is the Pet scan or PT or something. It checks everything that isn't bone. It is unlikely that anything is there either but we will know Thursday.
Thank you thank you thank you for everything.

Jennifer Garner and my class reunion

It's amazing what you can do in a few hours sleep....last night I was in a movie with Jennifer Garner, at some sort of class reunion, and I moved into several different houses trying to avoid having any feelings of anxiety. The last one is kinda wierd but pretty self expalnatory.....or is it explainitory, I don't know where the spell check is on this computer.

Anyway, in every one of the dreams I was trying to avoid something...and in the class reunion dream I was in a hospital gown and was embarassed to get out of the hospital bed I was in...like it wasn't already obvious...

I woke up from every one of them with a knot in my stomach and funny feelings in my legs, like when you are afraid of heights. Jennifer Garner is very nice as it turns out tho'...just in case you were wondering.

I don't know if the dreams are anxiety based (ya think?) or from the radiation beam to the head or a little or lot of both. I am thankful for the sleep but when you have done that much in one night you don't really wake up rested.

This "go round" is a bit harder for me mentally, emotionally, spiritually.....the supernatural happens on a daily basis and thank God it does....we are a sorry lot for the most part and I am so thankful for grace in the daily stuff...the hug from the technician who does my IV was one of those times...she dropped everything that was in her hands right to the floor...it scattered hither and yon, and she threw her arms around me and gave me a hug that only your mother's aunt Mabel can give and told me she was praying for me every day. That was a healing moment...I think for a split second the cancer stopped or maybe a few cells shriveled up and died. I am thankful for that moment.

Cement shoes

I'ts 8:30. If I wasn't looking at the clock there is no way I would have known. This has been an incredibley long day. 9:00 isotope shot, 9:15 CT scan, 12:00 bone scan, 2:30 radiation treatment with a few xrays thrown in for fun. I slogged to each appointment like my shoes were made of cement...big giant blocks of cement. I felt like I was wrapped in a wet blanket all day.

The results of the bone scan come tomorrow....radiation treatment at 10:30.
Trick or treat? I'll take treat given a choice....I am a little heavy on the trick side.

Skull and scan

It's 3:45 in the morning and I can't sleep. I have slipped on a new black sweater that my mom bought me today in hopes that it warms me up but I think the cold is coming from the inside as well as the outside. Still, it is soft and covers my arms which is somehow comforting.

The cancer is growing again...in my skull...we aren't sure about anywhere else but we will know more in a few hours....I have a bone scan scheduled for later "today" and another PET scan scheduled for next week.

Yesterday I was in no pain...tonight my hip hurts , my neck hurts, between my shoulderblades...and my heart....the last one I don't think I have to explain.
Right now I am not really "anything" when it comes to emotions....I don't think it all sinks in at once....radiation starts tomorrow and goes for the next 4 weeks. This time I get to lose the hair.....at least that is what they tell me.

For the first time in all of this I feel defeated.....I don't like that feeling...it feels "too big"...it feels like someone is playing a trick on you and they outsmart you and there is nothing you can do about it. Yes, that is exactly what it feels like.

Miracles are possible ...I know that with my head....what's left of it anyway.....just not sure there are any scheduled in my near future. Sometimes hope takes too much energy....if feels like too much energy tonight.
When I know more I will pass it on.

"Harley" a vacation

So we are here.....the Hardley Davidson chicks have made it to Spokane. The weather is fabulous...sorry.....we finally decided to go to dinner at about 8:30 and it was 77*.... that wasn't even our high in Anacortes....anyway it was lovely to say the least.

Most of the day was spent laughing and listening to music on the way over.....overly commenting (on my part) on how desert-y it really was....and just a little shopping and eating and buying of mid-day caffeine products.
The GPS in the Lexus got us to the hotel and we hauled our gear to room 325....stopping for complimentary cookies in the lobby....Lynn filled the ice bucket and we took a break from the car for an hour before heading to dinner.

After dinner we drove around town a bit, then back to the Pheasant Hill Inn grabbing some herbal tea before heading back to the room...

We put both of our brains together and came up with enough of one brain to get the laptop connected and here I am.

I don't know for sure what the plan is for tomorrow but isn't that the point of the girly road trip.....

Ok well Thelma is busy texting so Louise is going to hit the loo to slip into her Pj's and climb into her giant princess and the pea bed.
Will write tomorrow.

Singing Hallelujah

(originally written 7-7-08)

The results came back from the latest scan and the spot they saw in the liver turned out to be nothing. Not only was it nothing but the "something's" are now nothing...that is to say the cancer in the bones is now offically dormant...like me...and not only is it dormant but there is actual scar tissue which normally sounds like it wouldn't be such great news...like in the sentence "My, but you have a lot of scar tissue."

But in this case, it means that things are healing...hence my calling my dad to ask him how to spell hallelujah so I could use the word hallelujah in both the title and the body of this blog. So HALLELUJAH...and thank God for the words dormant and scar tissue in the same sentence!!

We all fall down

Well we didn't ALL fall down, but I did. I tripped and fell flat on my face. I honestly can't remember the last time I fell down...well now I can because it was last night.

Now in context this is a bit scary as my bones haven't quite healed yet, so the potential for a larger more embarrassing situation was definitely a possibility.

It's always embarrassing as an adult, I think, to fall down....but even more embarrassing when you trip and fall coming out of the bathroom. Ohhhh yes, that is exactly what I did. I left the bathroom last night, turned out the light, and with tiny pupils walked into my dark bedroom and tripped over my dog that was laying on the floor right in front of the bathroom door. The room was dark, the dog is dark, the carpet is dark, and I'm a dork.

Nothing broke, thankfully....my son ran and got ice and sat beside me on the floor...my husband sat on the other side of me checking for broken parts, and my daughter got up and called MY DAD???? Yup...she called my dad and handed me the phone..."Hey dad, ya, I fell down, on my face...."

Ok take all the worst parts of an MRI and then take all the worst parts of a CT scan and put them together and call it a PET scan.... There's the IV part and the sitting "ABSOLUTELY" still for one hour BEFORE the scan, then the drinking two 16oz jugs of congeal-y liquid that in no way tastes like the fruits of the forest which it proclaims, then the iodine injection that makes you feel like you have soiled yourself then there's the tiny tube which they love to call a donut because, I guess, that is supposed to make it more fun, but it's tiny and you are trapped in it for 30 minutes with your arms up over your head, which ain't no fun I assure you, donut or no donut.....

So there you have it. It's done and done thoroughly. Now we wait for the results.

Unidentified

It’s 4:04 am and there is an unidentified spot on my liver, and the house is finally cooling down but my room is still hot and there is an unidentified spot on my liver, and the 4th of July is in two days and I have no idea what I am going to do about dinner and there is an unidentified spot on my liver, and the bachelorette is down to the final two and there is an unidentified spot on my liver, and I tell myself over and over to quit worrying but there is an unidentified spot on my liver.
Desperate for the quiet release of sleep……….but………..

Stop your arguing, stop it now, stop before I have a cow

Why is it our kids always argue with us when it seems "life in general" is at it's worst? Maybe that is a really really stupid question, but I have been asking myself that very thing today over and over.

What I would like to do is look them square in the eye and say "Don't you understand there is a spot on my liver that is getting bigger, and many people attempted to ram a plastic tube with a blunt end into every non-existent vein in my arm again and again and again, and I spent $4.40 a gallon to drive to the damn doctor and back and now I have to do it all over again on Monday, where they get to inflict more extreme discomfort, and again on Thursday for another scan with another IV and more horrible liquids....SO STOP ARGUING!!!!!" But they don't know about the spot so I can't. And because they don't know about the spot I can't cry or be abnormally whiny...I have to be "happy healing mom".

So happy healing mom is hoping that her kids go to bed early tonight so she can cry for a few minutes and let some of this cancer madness find it's way down her cheeks.

Liver spot or spot on liver?

Soooooo I went to the Dr. today.....let's just say I would rather uhhhhh (give me a sec to think of something awful) I would rather........find a dead rat somewhere in my house (just not my bed) then repeat today's apt.....not just your run of the mill dead rat mind you, but one that has been dead for a while and part of it's jaw is missing....that kind of a dead rat...got it?

I fooled myself into thinking that "no news is good news" when I had the scans two weeks ago and then never heard from the Dr. He is very diligent, so normally that would make perfect sense.
But today I learned that phrase isn't always true.

There is a spot on my liver. Oh what I would give for a liver spot instead! There was a spot on my liver a few months ago, but it was teeeeeny tiny and appeared to be a blood vessel. But, as blood vessels don't normally double in size, this spot is a bit more of a concern....because....well....it has doubled in size.
I saw it with my own eyes and yes, although he had to point it out to me, it was there and bigger in the second scan than the first.

No one knows what it is tho'. You see, the results of the bone scan were perfect. According to those, everything we are doing is working great. However, if it were working great then nothing should be growing in the liver. Duh! Everyone knows that. Actually I didn't know that...he told me. So if the liver thing is bad, then the bone scan should have been bad too....it's all a bit puzzling..... so next week I have a PET scan (I have just about had a scan for every letter in the alphabet..PETMRICTBONE...)scheduled for Thursday.

I am not happy....no, I am pretty sad actually, sad and anxious, and mad, and overwhelmed.....
So after that fun apt I spent the next hour trying to start my IV infusion. When I say "I", I mean the 4 Nurses that each attempted multiple times to start the IV infusion...only to have every vein in my arm fail. So, with my arm leaking, they sent me home. There were no more veins left to poke....I looked like a voodoo doll that had really done somebody wrong!

So here we go again...as if the first round of character building experiences weren't enough. I thought they were but sadly I don't get to make those decisions.
I will send more info as I get it...or I may just vent more at random.

Very lyrical

Well, here I am again.....parked in front of the computer at 3:18 a.m.!!!!!!!!!!!! Good grief!!!!!!!!! Looking up song lyrics of all things...what's that about? I'll tell you what it's about.

The strangest things are waking me up in the middle of the night. For the last few nights it has been songs running through my head when suddenly I stumble over the lyrics and it's so darn upsetting that it wakes me up. I knew I shouldn't have watched the country music awards last night....at least now I know the name of Brad Paisley's teacher that "polished him until he shined".

And two nights ago it was Jewell.......she called me and she had so many questions, 30 minutes worth if we really talked from the time I got back from the bathroom and when I woke up for the 4th time.
The frustrating thing is I can't blame the steroids any more because I am not taking them...and Chad hasn't snored for weeks (which has been awesome by the way)....so I just lay there.....sometimes I stew about everything.....sometimes I get mad all over again....sometimes the shock of all of this floats back over me....sometimes I pray....so FYI if you have any requests that you would like some middle of the night attention I am your gal.

Sooooooooooo, I'm gonna go now because I still have to look up the name of the 4th gal on the re-make of Lady Marmalade....you know, just in case Christina calls me when I fall back asleep!

Welcome home mom

I am Home!!!!!!!! Finally home.....I came home to streamers and banners and balloons and kid kisses and cats and a dog and neighbors who I love. How healing is that?!

Now I am awake and it is the middle of the night..... but it's just the rush of it all.....all the sounds of the house are the same and it is so comforting to hear.

You forget sometimes what it sounds like when the furnace comes on and it humms you back to sleep when you have just a tiny chill, or the clock in the bedroom that ticks and like a baby in a cradle it lulls you into that sleepy fog.

Now that I have said all of that, I should try and go back to sleep. I was just so glad to be home!

Tissue please

Ok finally,
You have no idea how cool (literally) it is to be able to take more than a sip of water at a time. It is sooooooo cool.

Today I had half a cinnamon roll from Penguin coffee and it was AWESOME! That's the "up" side....the other side is that I am not home yet. My tummy is still a bit iffy tho' it is day two of Non-throw-upage....also I have a Dr's apt on Friday and it just seemed goofy to go home today and come back a day later. So the plan is to be home this weekend and life begins again............wow.......how strange is that going to be????????

I am really looking forward to it but it just seems almost foreign now....the animals and the kids smacking each other.....the refrigerator without the the ice and water dispenser....no air mattress on the bed that inflates and deflates like a Mediterranean massage....no mom to wash my Jammie's....no sunset water views and late night piano bar...

But how can that compare to kids who miss their mom and can't wait for her to come home.......tissue please......

ZZZZZZZZZZZZZZZZ

I am down to about 4 sounds this week......a wretching sound, a yawn, sleep breathing (I don't snore) and crying.

I have never never never been this tired before in my entire life!!!!!!!!!!!! Radiation is nothing but destruction and your body,...... my body spends 23 hours trying to rebuild only to be attacked again each day. And let's face it, Rice Krispies and white bread are not the food of champions.....my instructions are to let the radiation break things down and don't try and stop it. So here I sit, not stopping it. I can't tell you how much I am craving a freaking fresh strawberry!!!!!!!!!!!!!! Wow Chad better go with me to the store when I am feeling better or I may break the bank with fresh fruit and veggies.

This is sometimes more than I can bare but I wouldn't trade what I have learned either.

What doesn't kill you makes you stronger

I think last week was the longest week of my life.....ok maybe it was the last week of both pregnancies.....either way it was a long long week. I am afraid that this week is going to be a long one too.....
Tomorrow I start the day at the Oncologist office.....blood draw, see the good Dr. then I get an IV for the next hour and a half of some bone building glop....not sure what it is but it's supposed to make me stronger......and isn't that the goal? Then when I am done with that I move over one office to get radiated once again. 5 more days....that's it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 5 more sleeps.....well more than that I guess since I sleep during the day too.....oops...it's like narcolepsy......crazy crazy.......

So it's hard to know if I should be depressed or excited.......the chemical menopause doesn't help........and after all I am really only functioning on Rice Krispies to be honest....not really brain food......
The deconstruction phase is almost through and reconstruction starts in 5 days..........I can't wait!!!!!!!!!!!!

The Golden pills are not so golden

Ok so the golden pill doesn't work!!!!!!!!!!!!! Well it works as well as the other pill I was taking which really only works in the morning....which is better than nothing because I wouldn't want to be in the mask and have to.....you know.....wow that would be horrible. But TGIF....which I think I will write on my belly tomorrow and surprise everyone at treatment!!

I need some good ideas for the last day of treatment.....something fun or funny to celebrate.......did I tell you about the old guy who was having his pelvis treated and on the last day showed up in woman's red and black Lacy undies? Gross but funny!!

So I have added ice chips to the rice krispies............not in the same bowl.....I am just so thirsty and if I drink water then my tummy "rejects" it to put it nicely. It pretty much rejects everything after lunch.......I wonder if Saturday will be any different.......everything madly trying to repair itself from my head to my legs..........healthy tissue desperately trying to march back from destruction......
My hair is the only thing that hasn't been affected......yet....I can only hope.....

Do you hear what I hear

Shannon who's mother comes in after me and who helps with the !@#$ Thomas Kincade puzzle said "trailblazer" but I still say guinea pig as the blood trickled in my ear this morning. Good grief.

I had noticed it getting harder and harder to hear and so when the blood in the ear thing happened figured I should check with my 19 year old Dr and find out what was going on.

Surprise.....it's a side effect of the radiation. It will make the ear canal swell and irritate the outside of the ear and blah blah blah blah....blood and hard to hear and wax and blah blah blah....RATS!!!!!!! So I sat there humbly while the Dr cleaned my ears and I could hear the rustle of his lab coat loud and clear. He mentioned doing it again next week......it's a date!

I listen to my friend Natalie Grant's CD during treatment everyday....today was the Awaken CD....I hear new things each time I listen and today I heard....."I'm loosening my grasp, there's no need to mask my frailty"..........I'm trying........oh if we all could .........but I'm trying.

I swallowed the golden pill just a few minutes ago....which is one reason I decided to write this now instead of later today....you see I can't throw up now for at least an hour and I figured this would help distract me......thank you.......it is a new pill for nausea and it costs like $2000 for not even 10 pills.....but the 19 year old Dr gave me samples....one per box....two boxes....to see if they work better than what I am taking.......for Pete's sake shouldn't they at that price? anyway.....we will see if it really is worth it or not.....wish me no barfing!

It's all about the Rice Krispies

Well I am writing when I can…..I struggled with how I am going to say this because I didn’t want to sound like I was complaining…..sick is now the operative word. The only thing I can do now is just concentrate on the number of days I have left. Two more days this week and 5 next week. But it’s hour to hour now. It’s all about the Rice Krispies.

Brick wall

All in all it's just another brick in the wall.......the wall I hit Monday....like a cartoon character where it leaves the indent of your face.....that was me.....

Nausea, fatigue, you name it and I was feeling it.....then I cried....and cried some more....and a little more for good measure...because I did not NOT NOT NOT want to go back again. But then I ask myself what choice I have and I don’t have one really so there you go. Hence the tears.

Then I slept...no, then I slipped into and comatose/denial like sleep from somewhere around 4 to somewhere around 10....and I woke up and it was dark and I was still feeling sick and it was just plain awful.

Then somewhere in the middle of the night....when I was far enough away from the treatment, I began to feel better. By morning I ate one of those 1,000 calorie Costco muffins (yum) and drank G2 and was thankful AGAIN for all the thousands of prayers that float skyward so that I could get up and go this morning.

After treatment the Dr wanted to see me so I slipped into the exam room and we sat and talked about "medical management" of the symptoms.....then I found out that I was the FIRST patient that he had ever treated 4 "fields" on. And that he knew from the beginning that it was going to be a rough go. Then Shannon, who is helping with the !@#$ Thomas Kincade puzzle, said that I was a trailblazer not a guinea pig......not so sure....
8 more sessions!

Mary had a little lamb....la la la la la

New x's and arrows have brought on new issues....there is more in me than bone and it seems like it's been "hit" ....my stomach that is.....

One of the sites that they are radiating is the surgical site on my back that had the tumor that was pressing....it's about equal to my stomach in placement and they zap it from the front and they zap it from the back....and I think they zapped a little more than the bone the past few times....good grief....

It was Dr day again yesterday....this time it was the neurosurgeon....remember I told you I wasn't going to ask any questions? Well I didn't! Sadly tho, he volunteered some info that freaked me out.....is still freaking me out.....too much too much too much ........there is a tumor on the rt side of my skull....last year it began to make a small bump on my head.....who knew? Well the concern is that it was expanding inwardly as well and they don't want it to put pressure on the brain. AAAAARRRRRRRRGGGGGGGHHHHHHH! La la la la la....Mary had a little lamb, little lamb, little lamb.......

The hormone therapy is supposed to make it shrink......the little pill that I take each day that sucks the estrogen from my body is supposed to suck the life out of this as well. How does one not obsess over it now?
I ended my email the other day with whom shall I fear? Well, if you ask "Laurie" Laurie, she would say information.... so I am working on that.....not reacting to the information but responding to "the truth".

I'm melting!!!!!!!!

So.....it was Dr day today....Dr Landis, the radiologist who doesn't look or sound a day over 19....after my treatment I was nestled into a exam room and waited. We did our typical review of pain medication and how was I feeling etc....then......against my "normal"....I asked another question. I told him that everyone had said that I was shorter.....he chuckled, flipped to the back of my chart and there in about 8 different colors was my spine and the outlines of the tumors.....all he wanted to do was look at the disc space and compaction etc...but there I sat staring at the very thing I didn't want to see............tumors..............I couldn't blink or close my eyes....it was no good.

There were red places and yellow places and white, and blue and green and I didn't know what any of that meant and I didn't want to know....but outlined in red were the tumors....only the ones that were on this 8.5x11 piece of paper in the file....but isn't that enough? The one that required the surgery was larger than......than I am comfortable with....I still can't process the thought of it very well even tonight.

As I stared at the page Dr. Landis began pointing out disc space and vertebrae stacking etc....he said that I wouldn't "grow" again but that the bone building medicine that they were giving me would prevent me from getting any shorter. Stinkin' tumors! They really messed me up today.

Tomorrow marks halfway through treatment. I see the neurosurgeon tomorrow....I am NOT going to ask any questions......denial sounds good right now....too much self improvement for one day I think. Dang these life lessons.

Reflection

I saw myself today.....it was bizarre and totally unexpected......I was laying on the radiation table, a Plexiglas square is slid in front of the lens of the machine and the button is pushed. The table I am on slides down...my eyes are uncharacteristically open and I see myself....like a Lifetime movie of the week.....no denial....X's lines arrows and circles marking "treatment" areas reflecting back at me.....for now there is no drifting off with the music, I don't even think I remember hearing the music at that point. RADIATION was all I thought....

Then I closed my eyes, not to avoid seeing myself but to sit with it for a minute and see if I could finally see it differently.....to see it helping me , fighting with me against these tumors, an ally......I think I may be getting there......slowly.

About 1/3 of the puzzle is done.....it's day 7...whom shall I fear?

Foods that heal

Foods that heal............sure I am eating fresh fruits and veggies...a lot more now sadly, but then there are the real foods that heal.....yesterday's foods that heal were a Marion berry scone from Penguin coffee in Anacortes...and for lunch, an Oriental Chicken Salad from Applebee's pick up. These were truly foods that heal. Oh ya there are more.....the pecan pie that Sue took to Chad for his birthday when I couldn't be there to do it....and the casserole they ate for dinner last night....and the cake Chad's mom made for him.... the $5 Em got for lunch yesterday when she ran out of lunch money.....all foods that heal in my book!

It's almost 7am and my stummy is now feeling the need for some foods that heal after all this.....thanks you guys that I am not going "hungry"....thank you thank you thank you!

Good versus evil

It's 3ish and it hurts. Usually the pain pills I take before I go to sleep cover me through the night but for some reason tonight they haven't done their job quite as well. So do I cry because it hurts, which is what I would like to do, or do I take another pill, which I really don't want to do? I guess I will decide here when I am done.

The first few hours of sleep each night I am finding , are a battle subconsciously. It's very strange the dreams I have in those first few hours. They are always survival.......as if my body needs to remind itself that it is really fighting for it's life each night. Like my brain is saying "just because you watched Extreme Home Makeover' tonight before you went to bed doesn't mean nothings wrong you silly girl. Here let me remind you that this is a battle.....

So the forces of good and evil do their thing in and around me.....then, just like at the hospital when I didn't want to hear the "bad news" being told to me over and over again, I just close my eyes and try to fall asleep as fast as humanly possible.

I think sometimes, that if I listened close enough, I could hear the clanging of swords, and the whoosh of angles wings, but I really don't listen on purpose because I really feel like I might hear it and then what do I do? It should comfort me I would think or would it scare me? I really don't know.

So the battle goes.....I have decided to take another pill and let tomorrow, or this morning, arrive without hurt. That I suppose is something I can do for myself.
Thank you for being in the battle with me.