Showing posts with label cancer treatment. Show all posts
Showing posts with label cancer treatment. Show all posts

Saturday, December 11, 2010

Diagnosis Cancer - December 2005 part A

From March 2005 - June 2008 my blog was elsewhere.  I'm worried all the posts during my cancer diagnosis and treatment will be lost so I'm moving them over one month at a time.

Little late update


posted Sunday, 4 December 2005

The last few days have not been fun. I thought I would get on sooner but . . . The first day or two of the chemo was ok. Nothing newsworthy. Just went about with my IV and hurting from the surgery installing the port. It hurt like crazy when they hooked the IV to the port but I figure it's because I had just had surgery and she had to poke around near the incision to find the port. It was her hands feeling for the port that hurt and she had to poke me three times. The poking of the IV really didn't hurt though. For my surgery they had drawn blood and poked three times for the IV in my arm and it all hurt tremendously. They finally gave me some pediatric gas to knock me out enough to start the actual IV. The pediatric gas tasted like vitamins and I was knocked out pretty quick. Looks like they got the IV on the next stick and my arms are bruised and such. I have an incision on my neck and one on my chest for the port. I took photos but will have to load them later. When the nurse was trying to get the IV in the port my husband kept getting more agitated. I thought he was gonna deck her. :) After the second attempt he said maybe we should wait and I told him to get out if he couldn't take it because we were doing this. She got it on the third attempt and he told me how brave I was. He hates to see me in pain and I wasn't sure if he'd be able to take the needle out when it came time. We had to take the pump off, then inject saline, then heprin into me before removing the needle. He did great. He really had to pull the needle out, I was amazed it was in so well. I sat in a chair with 5 other people all of us getting chemo. They also have beds so you have a choice but I let the bed go to the next lady, she looked like she needed it more. The beds are in private rooms and everyone, no matter where, has their own little tv. There was a lady passing out snacks and drinks periodically. Most of us were there several hours. I was there from 8 am until about 2 pm. They would also bring you a pillow and warm blanket if you wanted. I got an infusion of calcium and magnesium which are supposed to help lessen the neuropathy ( cold/tingly hands and feet) then the oxaliplatin chemo then more calcium and magnesium then the 5-FU pump for 2 days. I got a hat in the chemo room, it's red and says "Chemo Sucks". The hats are all donated so you can choose one. Some just looked like average hats but I liked this one. Mark and Helen had a holiday party Friday night and while we went we only stayed about an hour. I needed to get back home but I'm sure they understood. I had taken a nap before we went but when we got home I fell right to sleep. That was about 7pm. Slept all night and most all of yesterday and last night. Yesterday I was so nauseous I didn't eat - this is day 3 of not eating much. However the oncologist says that's ok, the nausea pills make you sleep instead of puke. Friday morning I woke up to a swollen throat and little bit of nose bleed. We called the oncologist because my chest also feels full. He said if it had happened Wednesday he would have thought it to be an allergic reaction to the oxaliplatin but at this point he has to look at heart attack from the 5-FU or a cold. We decided on a cold. Today I haven't taken any pills yet and I ate an egg and a few bites of toast. Oh and a cookie my husband made. He figures I need some high calorie food. My arms and legs are soooo skinny. I hate the way I look right now. One of the side effects of the Oxaliplatin is neuropathy. You have a greater sensation of cold. You need to keep gloves by the refrigerator and breathe through a scarf when going out in the cold. AND, this is the killer, can not eat nor drink anything cold. I always fill my glass totally with ice then add soda but now I have to drink everything lukewarm which means I don't drink much. I try but it tastes so bad. Too bad I don't like coffee or tea or hot chocolate. I've just always thought my drinks should be very cold and my food very hot. Dennis keeps fretting over me. He will be working on the house then pop in to check on me. I hate how much he worries but I love him for it too. Same with my mom and dad. They call to check on me and I know they wait for me to call and I feel bad when I have to say I'm not feeling well and I keep telling them all that I don't want to go through any more of these. I'm talking to the oncologist when I go back. I'm really not sure this is worth it. Don't get me wrong. I want to live. I'm not giving up but this is just changing the percentage slightly and they're watching me closely and I'm talking to him to find out the exacts. If not for the chemo I'd be recovering nicely by now. On the house, the bank still needs to see ALL of the siding done so Dennis is outside, fighting the siding trying to keep it from breaking in the the cold to get it on so we can close in the next couple of weeks. The appraiser told the bank that it wouldn't affect the appraisal but the bank must have photos of it done.

Sidetracked by the SciFi Channel


posted Tuesday, 6 December 2005

I've spent the last few days and nights sleepless.  This is not normally a problem I have but maybe I'm making up for all of the time I slept through the chemo in the previous days.  I lay in bed, in the dark and beg for sleep to come but it doesn't and I'm not tired in anyway.  Weird.  During these sleepless hours I've had much thinking time, in fact that may be part of the issue as my sleep is plagued by dreams and the dreams are nightmares of chemicals injected into me and such.  Probably normal cancer patient nightmares, feels like I'm on the SciFi Channel - which leads me to mention we are watching The Triangle on SciFi, a three night mini-series - this is night two and so far it's good.  I hadn't watched SciFi in years but found myself watching it this morning too, an old Kolchak:The Night Stalker marathon apparently.  I loved that show when I was a kid.  Anyone who's watched SciFi knows they like to do these weird little things, a type of station identification thing, making sure you know you're watching SciFi and they always have to be creative and do it freakily.  Well I got my week's laugh today watching one of those, in fact we have DVR so I was able to rewind and watch it over and over and laugh my butt off.  I guess I'm saying if you haven't watched this channel in a while you might find it worth your while to drop by and get a laugh.  Ok, here's what happens.  A man walks onto the screen carrying a Chihuahua, he promptly places his mouth on the dog's poop hole and blows and each time he blows a different part of the dog turns into a balloon-dog until the whole dog is a balloon animal.  I was shocked, never thought I would see that!

Ok, back on topic. During my many sleepless hours I have had a few thoughts on things to share that aren't cancer related.  Well, I guess they kind of are but they are more in the minds of cancer patients I imagine.  I've decided to open up a little more here by sharing some of the thoughts - don't worry though, I'll still let you know how crappy I'm feeling.  :)

Well, the title of this entry was going to be "Daylight in Wisconsin" but since I got off on a tangent I guess that will wait until tomorrow.  In the mean time please know how much it means to me that you check up on me and think of me and pray for me, I feel very loved right now and that sure can't hurt.  Please feel free to email me anytime, I LOVE hearing from all of you.  I will always answer you back, it just may take me a few days.  On my down days I don't get on the computer at all and even on my up days I may only be on an hour.  I am working on gaining some more strength so I can endure more time as I miss my computer time.  Lots of things I miss right now.

Wisconsin Skies


posted Thursday, 8 December 2005

Yep, it's another sleepless night.  Too much thinking time and so many thoughts flying through my head that I can't get them all down and they're lost.  They all seem so extremely important to share yet the moment hits when I'm in the bathtub or some other time I can't get to a pen to jot a note so I don't forget.  Then the notes are so concise that when I begin to type I've lost the feeling behind the thought and it comes out as babble.

This past Halloween was the two year marker of our move from South Texas to the heart of Wisconsin.  I love Wisconsin, the weather is right up my alley and I've told my husband I will only move further north in the future.  There are many things that seem foreign to me even after two years here and I'm sure people here think they're normal.  Makes me think of the Joplin, MO area where I was born, raised and lived for 35 yrs of my life.  The things I hated, the things I miss, the things I took for granted.  In MO and TX they are stop lights, up here they're stop-and-go lights.  A creek was a creek and now it's a crick.  For the life of me I can't find a good steakhouse, decent rolls or biscuits, awesome chili (up here it's soup and forget about a chili dog), and I long for Missouri's cashew chicken.

I love our little Funny Farm town but we still get our directions confused, probably due to the fact the sun rises and sets in the south.  In the summer the sun is shining brightly by 4 a.m. - Can you believe that?  I am not a morning person so I prefer the winters when the sun wakes up after I do around 7 a.m.  Lately, I've taken to laying in bed and watching the sun peek over the fields, beautiful shades of pink and yellow and everything looks fresh and innocent.  Beautiful white covers the ground and will be here until at least April and the sun seems even brighter.  Many days this is the only time you will catch the sun because within an hour it's covered by clouds or falling snow but the most awesome days are the ones when the sun shines brightly AND it snows - sunlight dancing off the flakes as they float down.  Since being here I've learned to ice skate and love to skate on days like those.  Weekdays kids are in school and good adults are at work and I can sneak to the skatepark which is surrounded by evergreens so you can forget everyone.  I skate alone and take my time and think and breathe the cool fresh air and love those moments.  I hope I'm able to this year.

After I pull myself from the bed I HAVE to go to our bathroom window and survey the yard.  There is a special tree out there, placed perfectly from that window and I enjoy it's shape.  It's a pussywillow, no taller than four feet and one of the few trees that came on our land.  Of course we didn't plan the house around the tree but it really is perfectly placed.  It seems so strong out there by itself, nothing but grass - well now snow - around it for yards and yards.  I think that's one of the things I like about it, it's alone and strong and was not planted and tended, this is old farmland so it had to be strong to survive and I wonder where it came from.  There are a few pussywillows in our yard, though this one is the biggest.  I don't see any in neighboring yards.  It has a nice trunk and many  branches and looks much like how you would draw a tree, not scrawny but full and shapely.

Another thing to get used to up here are the very short winter days and long winters and it affects some people pretty badly.  I think Khris gets the winter blues, he used to be the happiest kid but I think the short days mess with him.  Most of the days we have a glare not true sun and it only lasts until 4p.m.  No kidding, it's dark, dark, dark by 4:30.  Such short days we have and yet these are the days, with the snow and the cold that I long to go hiking and just enjoy nature.  That's not the cancer talking because it's been that way since we came here.  We'll watch the weather on the weekends and if we miss the fresh snow we'll drive north to where it is and walk and enjoy.

I'm an only child and I'm sure this whole mess has been hard on my mom.  I really loved having her here and worried about my dad while she was here.  I thought this would be the first surgery she would miss but she made it.  She stayed with me the entire hospital stay and gave me my bed-baths and helped me into my first shower and hair-washing and reminded me to breathe.  And when we came home she cleaned and cooked and played with the boys and found time to lay next to me and watch movies too.  My parents and grandparents are all I miss of Joplin. . . well and maybe certain foods.  :)  Since going home mom has sent me a soft fluffy white hat so I have another choice when I go out on the cold days and we've been having them, January temps already.  Then a few days ago I got a box in the mail and my dad had found me some extremely soft pink muck-a-luck boots/house-shoes.  They are sooooo soft and warm.  I wish we were closer but I hated Missouri and they'll never move up here.  Unless I could get my grandma to move in here, then maybe mom would follow and dad would definitely come too.  Sounds like a plan.

My daughter called yesterday and she won't be coming home for Christmas.  I was looking forward to her visit but she thinks she'll be able to come on her spring break.  Hopefully, she will but I have a feeling I'll have to go to her.

Break time ~ And now you may certify me insane but, although it's a little after 2 a.m. I just came in from dancing in the snow, staring at the sky which I forgot to previously mention.  The nighttime sky has always been one of my favorite skies and when Dennis and I were dating we used to go for nighttime drives, maybe take a blanket and lay and stare at the stars while we talked and talked.  But even if we only drove I would be turned around in the seat wrong staring at the sky and I like to think that's one of the things he fell in love with.  I remember one evening we danced in my driveway to his car radio before he went home for the night.  This January marks our fourth year together and May will be 3 yrs married.  Our first vacation together we traveled 14 states in 10 days and my favorite night was the night we slept near Zion alone in a campground with no one around for miles and you could see the stars so clearly.  I never knew there were millions, had only experienced thousands in Missouri.  My second favorite night was in Yellowstone where we woke up to snow on our tent even though it was June!  Beautiful!  Up here, we have millions of stars too and since moving into our new place we can totally enjoy them, even fall asleep to them in bed as we have no curtains yet.  When I get strength I'll make some but currently we are curtainless.  Tonight the stars are out in all their glory and the sky is absolutely beautiful.  While I was out there I was thinking of the evenings we dragged our blanket out in the yard to stare at the sky and it feels like ages ago.  This house has consumed us and we have had no time for enjoying life lately.  I hope we can find more of those moments soon.

Finally sleep


posted Friday, 9 December 2005

Yesterday was a beautiful day!  We got some snow.  It snowed for at least 6 hours but not much accumulation.  Our ground is still covered in white from the last snow though and our driveway is simply smashed snow.  :)  Our tiny snow blower won't work on this 700' driveway.  Don't know what we'll do if we get a whole bunch of snow at once.  My husband just says we'll have Mikal drive his blazer up and down the drive until we can get out.  :)  Somehow I don't think I'll be required to hand shovel the entire drive anymore, at least not alone.  I walked out of a doctor's appointment to see see the lovely flakes coming down hard against the dark sky and was so taken by it I had to share it with mom.  I wanted to yell "mom!" as soon as she answered the phone, then say, "It's so beautiful!" but was afraid I'd give her a heart attack.  With everything going on with my health she would probably think the worst.  SO while listening to the phone ring I decided on a calmer approach.  Just had to share it.  We're supposed to get more snow over the next two days too.  Yippee!

I made it through the entire day just feeling achy from lack of sleep I'm sure but did take an Ambien at bedtime.  I have been cautious about taking them because I didn't want to mix them with pain pills.  I took it and was out within 10 minutes.  I woke up about 8 this morning and I swear I hadn't moved all night.  I woke on the same side I fell asleep on.  AND no headache today AND no nightmares last night.  Yea!

I'm glad you all enjoyed the last post.  I worried I had babbled on far too long for anyone to read the entire thing but I was in a mood so I typed anyway.

Next Mayo Appointment Schedule


posted Friday, 9 December 2005

Dreading the next chemo and next week.  Kinda sucks I get to feel crappy for about a week and then spend a week where each day I feel less crappy but get to think about the next appointments. I figure it helps to keep you guys in the loop on my appointments so that you'll know why you don't hear from me if I don't feel well enough to write for a few days.

Next Wednesday, December 14

7:20 a.m. Bloodwork

8:00 a.m. MRI {I have been having back pain so the oncologist is doing an MRI to make sure the cancer has not gotten into my back}

9:30 a.m. Upper Endoscopy {Checking for cancer in the esophagus and stomach}

2:30 p.m. Meet with the Oncologist

Thursday, December 15

7:30 a.m. Chemotherapy

Friday, December 16 is my son Mikal's birthday.  He will be 18 years old.  We had planned on having a huge bash for him with my husband's DJ equipment getting a good workout but things have had to change, of course.  I've told him he can still have some people over it just won't be the huge bash originally thought of.  :(  I even told him his friends can crash(sleep) all over the rec room, it's definitely big enough, I just hope I feel ok.

Awake again ( and Koontz)


posted Saturday, 10 December 2005

I swear every time you do something for fun - like dancing in the snow at 2 a.m. in your robe and houseshoes - you have to pay for it!  Life sucks.  I am once again awake.  My throat hurts, probably from my little joy session and I really want to be tired but I'm not.  I came down on the couch to try to let my poor husband sleep.  I have the Christmas tree lit and the fireplace, the only other light is the glow of the computer screen.  I just wanted to do short little vent so the world can know I'm awake when I should be asleep.  But the world is probably saying, "Take the Ambien, Idiot".  For one, I'm not a pill taker and right now I'm taking tons of them and with my throat hurting I don't wanna.  For two, I don't want to use a sleeping aid every night.  For three, my stomach has ached almost all day and I wonder if it's because of the Ambien.

Think I'll read my book.  Bad thing is this one is so interesting I know it won't put me to sleep.  I'm reading Life Expectancy by Dean Koontz.  It's captivating, totally.  I liked one line and wanted to share it with you, "Humor is a petal on the flower of hope, and hope blossoms on the vine of faith."  Just remember Koontz said it and not me, I don't wanna get in trouble.  I like this book because he keeps leaving you little bread crumbs on info that keeps you turning pages to find out more and this is one of his humorous books.  And while I don't want to spoil it for anyone there is a clown that's a bad guy and clowns creep me out so I'm liking that; it's like validation.  The other thing I like about all Koontz books is he always adds to my vocabulary or at least refreshes it.  Hmmmm, so far he hasn't used "sluiced" in this book.  My husband and I always laugh when we read that word because it seems Koontz uses some form of it in EVERY book.

5 Generations


posted Saturday, 10 December 2005

I come from a small family.  I can count on two hands all the family members on my mom's side of the family, ok I might need to add a few toes but you get the idea.  I feel particularly blessed because I am one of a small amount of people who knew, really knew my great-grandmother.  Longevity runs in my family and that may help me through this cancer.  My great-grandmother, Nanny (real name Elsie) was born in 1902.  She came to MO in a covered wagon from Kansas or Oklahoma, I don't remember which.  But I remember her stories of the trip, I remember sitting at her feet and listening to her stories and loving them.  She had four children, two girls and two boys.  Both her her boys died while they were teens but her daughters grew to adulthood.  She was always very close to her daughter, my great-Aunt Margie and Margie was a corker.  She was great, funny, at times crazy but wonderful.  I loved her dearly too, but Nanny outlived her as well.  Nanny used to be so sad to have lost her husband (died 3 days after my birth) and children.  She said it wasn't right for a mother to bury her children and at times she viewed as punishment from God.  Nanny was such a Wonderful woman that I have no idea she could feel she should be punished for anything, let alone punished so severely.  I am so happy that we have a photo of my Nanny, grandma, mom, myself and my daughter.  How many people have a 5 generation photo?  I should find that photo and frame it for display.

You all have made me think of my loving Nanny a lot lately, by the cards I have received.  She was strong in spirit and not easily discouraged and it was sad to lose her at 96 yrs old.  I had small children during those last years of her life and when I couldn't get to see her I sent her cards or notes for no reason.  I loved sending her little thoughts letting her know she was thought of and loved even when there wasn't a holiday.  And the fact there was no reason to be getting a card made them more special I think.  This is something I now do for my grandma (her other daughter).  During these last several months we have been so caught up in building a house for our family to live in that I haven't sent any cards to grandma and last week I got to thinking of that and how I needed to do it.  That very day I got a card in the mail from my grandma, just a thinking of you, missing you card.

I'm sure we can all think of someone in our lives that we care about but don't see as much as we'd like and maybe we should make it a goal this week to let them know how much we think about them even if we can't be with them.  You'll never know what a difference you may make in their day.

Dreading the chemo


posted Sunday, 11 December 2005

The countdown is on and while my mood hasn't plummeted to the depths of our basement I would say I'm slowing deflating.  Each day I spend more time thinking about the cancer and the chemo and the whole entire mess.  And I'd be lying if I said I wasn't concerned about the upcoming results of the tests I'll be having done.  What if the cancer is elsewhere?  Will I totally crash emotionally?  Will I give up?  I don't think I will.  I think my hope will remain but I'm sure the news will dictate the rest of my treatment.

I don't know if I can explain this in such a way to make sense to you but I'm going to try.  I feel right now that I have to live like I'm dying (like that country song) in the way that I have to plan for my children and family to know they are fine if I would one day not be here.  And in the way of enjoying and making sure to do those things I wanted to do before death.  Then, I feel like I have to live like I'm NOT dying in the way that I must prepare for a future and keep fighting.

There's been some confusion as to why I'm having chemo if the doctor thinks he got it all so I'd like to explain that.  The way the oncologist explained it to my husband and I is that the fact the cancer was in 4 nodes tells him that the cancer has learned to travel.  Such a smart disease!  It put it's little boots on and marched over to those lymph nodes and from there it may have donned a little life vest before jumping to the blood stream to be swept to the liver or lungs.  From what the oncologist says, those are the most likely places for it to show itself again.  Currently, I may have cancer cells too small to be seen by any equipment, swimming around in my lung, or liver just eating and growing while I think I'm cancer-free.  That is why I have to have the chemo.

Now, the oncologist also says this chemo only changes my percentages by about 10%, so evidently some of those little cancer guys may be tough cookies or really good hiders.  The oncologist assures me that even if I have it appear in the liver or lung I can have surgery to remove a lobe or two and be just fine.  Yeah, just what I need, more surgery, like my body doesn't already look like a land someone has been digging for buried treasures on.  Unsuccessfully, I might add.

Evidently, they don't have much confidence in this whole chemo thing because in addition to pumping me full of poisons designed to kill any little traveling cancer guys they want me to subject myself to 25-30 days of radiation aimed at the pelvic area to kill the opportunities for recurrent cancer there.  Maybe there's a huge dam built between my heart and my pelvis so the poisons can't get there?  Maybe pelvic cancer guys are more sneaky and resistant to those poisons.  Or, I know, the guys down there have on their little chemical warfare suits and masks, prepared for the fight.

I almost think I'd rather risk my odds with the rogue cancer guys than the educated morons dictating my treatment.  Don't get me wrong I like my doctors and I have confidence in their abilities.  I just hate this situation and wonder if the doctor is smarter or the cancer is.

I want to rewind to the days before I knew I had cancer.  I wonder if there were other choices I should have made.  I wonder if I had put the testing off until we were totally done with the house (as I planned) if I would have died before treatment or would I be exactly where I am now.  I wonder how long the cancer was there.  Was it there 6-7 years ago when I started having issues?  Probably not.  At what point did it cease to be Irritable Bowel and start to be cancer?

Cost of Chemo


posted Monday, 12 December 2005

I'd like to say I'm going all philosophical here but actually we got the bill today for my first chemo.  I was absolutely shocked!  Getting my port installed (now I sound like a computer) and my first round of chemo totals almost $15,000!  Ouch.  I know the insurance should pay a good portion of it but OUCH.  The one drug, Oxaplatin, that I get for about 20 minutes costs almost $4,000!  Can you believe that?  And here I was complaining because the sleeping pills are over $1 a pill.  The two day pump I wore was under $500 for the rental and the drug in it.  But that 20 minute one that makes it to where I can’t touch nothing cold, nor drink anything cold costs $4,000!  Amazing.  It better do more than that, a lot more for that price.  Heck I could buy a used car every two weeks for that price.  We figure we will be paying this bill for the rest of our lives.  But then I wonder what happens if it comes back.

Chemo - Round 2


posted Tuesday, 13 December 2005

We will be heading for Rochester tonight as my first appointment tomorrow is so early.  We're supposed to get a lot of snow over the next 24 hours so we're packing an emergency kit, just in case.  Hopefully, our trip will be safe and we'll get home ok too.  My stress level is going progressively up but I know it will reach it's peak before the endoscopy.  The MRI is no big deal so I don't think I'll have any issues there.  But when I get back in the pre-surgery areas I start really wigging out.  I hope all the tests turn out fine.  I think I'll have the results later tomorrow when I meet with the oncologist.  I know you all are here with me in spirit and that helps tremendously.  I will be thinking of you, my support group, while laying on the table tomorrow and I'll try to be a big, strong, grown-up Thursday when I face my next round of chemo.  I'm not sure when I'll be back online, I may be able to at the hotel tomorrow night, if not I will get on when I feel up to it.  If you want to see my schedule for Wed and Thurs it is in a entry further down the page.  I posted it a few days ago.  Thanx again for standing with me through this.

Tests done


posted Wednesday, 14 December 2005

Although they had some issues accessing my port, this morning's appointments went fine.  I had the blood drawn, then the MRI which I was able to nap through.  Then came time for the endoscopy.  I was nervous about it, but not as nervous as the colonoscopy.  It actually went painlessly and no effort on my part.  We'll see what the oncologist has to see.  I'm waiting to see him now.

It's been snowing all morning and it is absolutely beautiful.  Our top speed this morning though was only 40 mph due to the snow, some icy spots on the road, wind, and drifting snow.  But we made it safely, although with aching muscles from the tension of the drive.

I saw the oncologist this afternoon and everything is a go for tomorrow.  He is keeping the chemo the same but he changed my nausea medicine.  This new medicine I take one hour before the chemo and then the next two days.  It's supposed to keep the nausea from happening.  At $300 for 3 pills it better do something good.  Keeping fingers crossed.  He also gave me some medicine for my bladder upset (no, i hadn't mentioned that to you guys but it's been very irritating to feel like you have to go to the bathroom ALL the time - no relief).  All my complaints were met with knowing nods and affirmations that he hears these complaints a lot.  Like my sleep a lot, not sleep at all and my appetite being so screwed up.  I can be absolutely starving one minute and then be nauseous by the thought of food the very next minute.  Also, my taste gets totally screwed up, some things that I love the taste of normally, such as chocolate, tastes horrible and even the thought of eating it can be utterly unappealing.

I told him that I actually didn't feel bad today and teased him that he planned it that way.  I don't think he knows what to think of me.  I actually think he likes my liveliness.  He seems to be getting used to my humor.  I don't think I told you oncologists have no humor.  But he seems to like me, I'm sure I'm much different than his typical patients.  Younger for one, statistics show that, as well as all the other doctor's pity and affirmations that I shouldn't have to be dealing with this at my age and had no reason to be on the lookout for it or suspect the diagnosis.  Anyway, when I told him I thought he planned it, I said it jokingly but he agreed.  He said they try to let us start feeling normal or good again before they jump in and fight the cancer again.  He said they want to keep fighting the cancer as often as possible and that's why he's not ready to lower my dose but they also want to give me a chance to recoup before they fight again.  He thinks I'll feel better through this treatment with the new meds and because I know what to expect.  Now I'll feel bad and know it's normal for that moment which he says will lower my anxiety.

Also, there is a tumor in my lower back but it's not one they're worried about.  I forget what he called it but he said it's not malignant, not cancer and shouldn't be causing me pain.  The endoscopy showed everything was normal in the esophagus and stomach so we had good news today.  Finally!  My dad saw a shooting star a few nights ago and wished upon it, he says his wish came true today.  We all breathed a sigh of relief.

When I spoke of other doctor's pity I was referring to all of my doctors and nurses who are not directly involved in the cancer but are on the periphery, doing the various tests and such.  I am amazed by their interest in my diagnosis and treatment.  I feel some of them are thankful they have been tested and passed with no issues.  However, some of them appear to be thinking that they need to be checked, or maybe someone they love does.  For instance today my nurse for the endoscopy asked what brought me in.  At first I thought she meant for today's test but it became apparent she was inquiring about the cancer. I hadn't told her, she must have read my chart. She wanted to know what symptoms brought me and she was so sweet the entire time she cared for me.  She would touch my leg and stuff, touches meant to bring comfort.  She reminded me of my Aunt Vickie.

Most of these people are older than me and I'm sure they've been doing their jobs for years but I really think that my situation has caused them to think and hopefully act on their own fears or worries.  It's just amazing to me how many of these medical personnel are curious about my situation.  You would think they see cases like mine everyday, especially at the Mayo Clinic.  I just expect them to all be nonchalant, like the oncologist but they aren't.

I'm probably babbly today from the anesthesia and I may not make sense.  If I don't I apologize.  You know this is one of those nights that I'm not supposed to be responsible for small children.  I guess they don't include husbands in that count though because they sent him home with me.  :)  They didn't tell me to stay off my blog, but maybe they should have.  :)  Could be because they don't know about the blog.

I am hoping I have touched some of you to go get checked and if I have I would love to hear about it.  You can email me privately; it doesn't have to be public, just between friends.  I'm just hoping by sharing this whole mess I'm helping someone, just one even, besides myself.

I'm putting on my brave suit for tomorrow.  My husband's here to spur me on.  My goal is to make someone smile tomorrow while sitting in the room with other people in my boat.  I like seeing others where I am(not that I wish it on anyone).  They are encouraging just by their presence.  They have no idea how I look up to them, that they have been in this boat longer and haven't bailed.  They give me hope that I can stay until it docks.

2nd Chemo


posted Thursday, 15 December 2005

Today's chemo went a little different than the first's time.  Dennis and I got up and made it to the Clinic on time, even with my chattering teeth and hyperventilations.  The lady checking me in let me know their computer wasn't working right so they were having to do it the old fashioned way of writing notes and carrying them.  My appointment was for 7:30a.m. but they didn't call me back until 8.  They put me in a bed instead of a chair so I was alone with Dennis.  We liked the room, the tv was easy for both of us to see and we could talk easily.  Also I was able to sew on my cross-stitch and he was able to play on the laptop while I was receiving my meds.  The bad thing about being in this private room was that I had a harder time to touch someone with a smile.  The snack ladies were nice and we remember that I said something that made one of them laugh but we can't remember what I said.  One lady saw me sewing and she stepped in for a closer look and she was smiling and happy while looking at my project.

After receiving the oxaliplatin, the nurse was concerned I was having an allergic reaction because I was shaky and jumpy and flushed and hot.  She checked my heart rate, which was fine but she called the oncologist.  He told her to give me some straight saline and he would come up.  Chemo's on the top floor, Floor 10.  Dr McWilliams came up to check on me and I insisted I was fine.  Heck it was afternoon and I wanted out of there.  I would have said anything.  He told me they were concerned about an allergic reaction and I needed to be attentive to my throat closing off or any rashes but he'd let me continue and leave.  I made him smirk with some comment.  Then we were able to go ahead with my calcium.  The doc ordered some adavant (sp?) which was injected after the calcium and before the pump was installed.  The adavant is supposed to help with nerves and nausea.  Aside from running to the bathroom every 30 minutes (Dennis swears my kidneys are working so good that the medicine runs straight through before it can help anything) I caught a little nap on the drive home.

We stopped to eat before leaving town, our first meal of the day and ran into another couple from the chemo floor.  They were nice and we chatted several minutes.  They're from the Tulsa, OK area and Branson, MO originally - my husband lived in Grove, OK a number of years and we both lived in Joplin, MO for years.  SO we talked about "home" almost as much as we talked about radiation and chemo and cancer.  It was a nice little visit and I hope things continue to go good for him.  His cancer is lung cancer and in his nodes, it is inoperable so their goal here is shrinking it and stopping it from worsening.  He's already been through radiation.  Happy health thoughts for him and his family.

The roads were clear for our drive home, that's one thing they know how to do up here.  We got quite a bit more snow here at home than they had in Rochester.  We were afraid we wouldn't be able to make it up the drive but Mikal had made enough ruts that we made it.  We just don't think we'll be able to make it back out now.  Lovely, long driveway.  The pups have about a foot of snow in their area and they are absolutely loving it.

Friday, December 10, 2010

Diagnosis Cancer - November 2005

From March 2005 - June 2008 my blog was elsewhere.  I'm worried all the posts during my cancer diagnosis and treatment will be lost so I'm moving them over one month at a time.

Ultrasound and Colonoscopy


posted Tuesday, 1 November 2005

We went to the appointment this morning at 8:30 a.m. and I didn't get done there until about 1p.m. It took two sticks to get the IV started but it did work. They were extremely nice and knocked me out completely. Yay! So I remember nothing after she gave me the shot. I asked if I could be dizzy from it already, they said yes and that was it. Then I woke up and asked if they had been able to do the entire thing and they said yes. Thankfully. We then picked my mom up at the airport and in the morning I go for my CT scan, then the appointment with the doctor and surgeon telling us what we do next. More tomorrow.

I'm back!


posted Wednesday, 9 November 2005

Sorry for the delay in updates, I have been in the hospital this whole time and my mom has been with me and my husband was directed to update the blog but between working, seeing me and tending to house, dogs and kids he didn't get to it.

This will be short but I'll try to give you a more thorough update later.  I don't have very much strength still yet so this is draining setting at the computer.  My laptop crashed so I have to use my husband's desktop.  I got dismissed yesterday and was able to actually get home around 5 p.m.  I think I told you they did the ultrasound and colonoscopy trying to stage the cancer.  Well they couldn't get the probe into a good position to stage it.  The surgeon was basing his decision on the next step by this staging process.  We all suspected he would send me home for Chemo then surgery because of it's size.  But because of it's location he decided to do surgery first.

I had surgery last Thursday and everyone continued to be very nice and very concerned with my comfort mentally as well as physically.  I was given relaxing medication in the pre surgery room, before they wheeled me over to knock me out.  The nurses were great to hold my hand as needed and to just tell me to cry or whatever I needed they were there and great.

Gotta shorten this sorry.  Surgery went good and the doctor said it was Stage 3.  4 of the 28 lymph nodes taken out for evaluation came back positive.  Still in a lot of pain but hopefully that will pass soon.  My mom is here helping me until next Tuesday.  I have to meet with Oncology in a few weeks.  They want to give my body a few weeks recovery time before we start the Chemo.  So far the oncologist sounded like we may be doing two types of chemo.  He said they would both be done every 2 weeks for 6 months.  One of them would be at a facility for a few hours and the other one would involve a shunt and wearing the machine giving me an IV basically for 2 days.
More later, sorry.

Thank you everyone


posted Thursday, 10 November 2005

You have all been so caring and supportive, I just wanted you to know it has helped, is helping. It's great to have such wonderful friends supporting me through this. I think if I didn't have the internet and this blog to help me through I would feel more depressed and alone. It's wonderful to know so many people are rooting for me. Thank you!!

I am laying here letting the pain meds take effect so I can go take a shower. The Mayo called yesterday and apparently my next appointment is next Wednesday. I actually still have a lot of questions but I guess that's the day they should give some answers. That's the day we'll set up the chemo plan. It's still confusing to me how I got cancer in the first place. They didn't find any evidence of Crohn's or Colitus. So we still don't really have an explanation for it. One of the tests being done is to see if I have a gene that would make my kids need to worry. So far they're saying my kids should all start being tested at 25-28 yrs old.
Shower time. I'll try to get back
on later.

Cancer & House & Dennis & Lhasas


posted Friday, 11 November 2005

I had a pretty good day today, less pain, so that's great. With my computer messed up I don't have access to some email addresses and stuff saved on it but hopefully soon. Also, haven't even tried to get back on the groups yet to catch up but again I'll get there. I haven't been talking on the phone much to anyone, just don't have the strength believe it or not and am letting my mom carry my cell phone until she leaves to keep in touch with dad, so please don't be offended.

I'm really glad we went to the Mayo Clinic instead of waiting for everything to be done here. I would just be having my next test tomorrow had we waited and then there was still another one after that. So, I'm very glad we didn't wait, just imagine, in a few weeks maybe the verdict would have been Stage 4 instead of Stage 3. But then again maybe if I hadn't put off getting checked, waiting for the house to be done I would have been at Stage 2. Do you know the 5 year survival rate for Stage 2 is 90% while at Stage 3 it drops to 28%! Ouch. The Chemo supposedly is supposed to better my odds of the cancer not coming back by only about 10-15% according to the Oncologist so you kind of wonder if it's worth it. Then you decide it is, any percent is better than nothing.

Dennis is still hard at work on the house and things are coming slowly together. He's got the boys helping and his son has been coming to help too. He has almost all of the siding and soffits up and built a small fence for the doggies. The radiant floor is going; seems to be working. The doggies are enjoying warm paws. The garage we started building got blew down in a wind storm we had a couple of nights ago. So that's a mess and a big set back. I think the goal for tomorrow for the men (and boys) is to get the yard cleaned up, scrap stuff put into dumpster and finish siding. Hopefully they'll be able to rebuild the garage this weekend too.

Just hate that all this has been put on Dennis's shoulders. I was carrying my share of the weight until now. Now he has to work, finish the house, take care of the kids, the dogs and me and currently my mom. He has to take my mom to the airport next week and me to the Mayo again as I'm not allowed to drive yet. Somewhere he has to be able to find time to work and keep that paycheck coming in. :) As well as finishing this place, hoping for appraisal next week so we don't loose the rate we locked in at. Just way overwhelming and he seems to be hanging in there. I get bored laying in bed or sitting around so he makes sure I can go to the store with him or just get out of the house for a while. Luckily most places have wheelchairs and he seems to like pushing me around.

The lhasas all seem to be fairing well even though they aren't getting much of mama attention. I can't pick any of them up but it seems they understand and are being less demanding of me. I'm not supposed to pick up anything heavier than a gallon of milk for a few weeks or they said I could cause a hernia so I think I'll listen. The pups all seem to enjoy their new little fenced in area although they'd prefer to be chased all over the acres. (sidenote: at the time we had four lhasa apsos, we had taken in two pups - brother and sister - that at some point in all this I had to give up)

Just one more set back


posted Saturday, 12 November 2005

While I was in the hospital, let's see it was Saturday night (I had surgery Thursday), my blood pressure dropped enough to effect my breathing I guess. All I know for sure is the nurse would check vitals during the night a couple of times and that night she checked and came back with the machine that measures your oxygen. After a bit I had several nurses and blood pressure being taken every thirty minutes or so and they hooked me to the oxygen machine overnight. I kept setting the machine off because my oxygen levels kept dropping. I know the next morning, my blood pressure was 76/56 and she said it had come up. I had to be on that oxygen alarm thing for the entire next day and night. My blood pressure gradually came up although they did skip my blood pressure medication that day. But all through the day, anytime I got relaxed or started to fall asleep the monitor would go off, I had stopped breathing and my mom would say, Breathe Lisa. Over and over she told me to breath. I would have to move, adjust myself and almost hyperventilate to get the oxygen rate to go up enough the machine would shut up. I know all this kept me in the hospital an extra day.

On the day I was dismissed they had some discussion about my incision and the possibility of it being infected, maybe cutting it open, etc but they ended up deciding I was ok. Last night I had a lot of drainage and my gown got very messy, whereas my drainage had just been a small amount. This was a large amount and I was uncomfortable all night and the incision looked red again. After calling Mayo it was decided I would go to our local clinic to get checked. The doctor tried to determine if the infection is only on the surface or goes deeper because that makes a difference in treatment. My blood work looked pretty good. He is not positive the infection isn't deeper but he gave me antibiotic and I see the Mayo doctor next week.

Michele, we actually bought some pomegranates the other day. I love them but I'm not allowed to eat any fresh fruit or vegetables for at least another week. After that I'll give it a shot. :)

Back at Mayo


posted Wednesday, 16 November 2005

The last few days have been pretty eventful. After getting on the antibiotics I continued to have drainage, in fact the next morning I woke up looking like I had been slaughtered. My gown covered in blood so once again we were on the phone with the Mayo. They again discussed possibly cutting the incision back open but were not definite. They were comfortable having me watch it and go to my local clinic if things got worse. I had bloody messes for about 24 hours but it did quit.

I'm still having pain but saw the surgeon today and he assured me that it's okay. He said they actually tear some muscle during the surgery so it's not uncommon to still be in this much pain 2 weeks later. He also said the incision is looking good but finish the antibiotics. There's still some redness but it should go away as the infection leaves. He gave me permission to take a bath instead of shower so I enjoyed a nice soak and my book earlier. :)

We saw the oncologist, I really liked him. He was informative although I didn't like some of the news I got. I know this sounds nuts but I'm still having a hard time with this cancer thing. I think I'm walking around in shock still yet, maybe denial and I know my kids are still in denial. It's just so unreal. Just hasn't all sunk in.

Anyway, the dr says there's a little better than 50% chance of my cancer coming back if we did nothing else. He wants to do Chemo and possibly radiation to make those odds drop to a little under 50%. Seems like such a small difference it makes you wonder if it's worth it but. . . I go in two weeks to get the shunt. I will get the two hour treatment and the 2 day treatment for 6 months. Then because of how low the tumor was it sounds like I get to have radiation therapy for 5-6 weeks, Monday-Friday. this sucks.
I want to post so much info and hopefully will eventually get to it all. I so thank you all for being here and caring like you do, it makes a difference in my heart.

On the note of lhasas, and I probably need to devote a detailed post for this but for now I want to mention that Amber and I are needing help transporting our babies, Samson and Delialiah back to her in Miami, FL from Marshfield, WI. As you can probably imagine 4 pups are just too much for me right now. And according to the oncologist my next several months will be ate up with doctor visits and therapies and the pups need more attention than I can give right now.

Our first snow


posted Thursday, 17 November 2005

Hey guys, I was only at Mayo for the day and on my way home now. My husband has to work today in a town that is between the clinic and our house so we stopped overnight. He's still sleeping so I'm sitting in the bathtub, trying to keep from waking him. During all of this he has been so great. He's very attentive and doesn't mind wheeling me around in a wheelchair and I got a bath pillow from Bath and Body and another robe. :) He just keeps getting me things, you should feel the robe he bought me for the hospital stay. It's pink and SOOOO soft. I love it!

Sounds like I need to get some thermal socks and lots of gloves because according to the oncologist cold feet and hands are a side-effect of the chemo. He doesn't know if I'll lose my hair or not. I've been picking out hats just in case. :) I actually went to the beauty shop and got my hair cut shorter. I told the lady I wanted something that was basically wash and wear and shorter than my shoulders. She cut off about 6 inches and so far I have been able to just wash and go. Makes wearing my winter hats easier too. :)

Oh, we got snow. I guess I didn't mention our first snow started Tuesday, the day my mom had to fly home. It didn't interrupt her flight though. It was great having her here. She was so much help and company and Haden loved playing cards with her every evening. None of us wanted her leave but Dad sure needed her back home. They have 3 dogs and one of the Yorkies, Tessie had surgery for bladder stones, right before my surgery. Dad has been having fun cleaning up messes because she got an infection and keeps piddling everywhere. I'm sure Dad and the dogs are just as happy to see her as we were sad to see her leave.

I have just sat here for a good 5 minutes stumped of what to write next. My mind got side-tracked on oncologist visit and books I'm reading and while I feel there are a million things I want to share I can't seem to figure how to get them all out. I'll keep trying.

We got a three week extension on the house so Dennis is feeling better about that. The bank also seems to be willing to let us have a few things unfinished but we have to talk with the appraiser to get definites.

Christmas Cactus


posted Friday, 18 November 2005

Last night my husband was so intent on getting the tv hooked up in the bathroom for me so I can lay in my whirlpool and watch tv.  Aren't I spoiled?!  :)  It took a couple of trips to Menards but he did get it up and working and looking good too.  I'll take a photo if I can figure out where he's put my camera.  I feel lost in my own house right now.  :)  I usually know where everything is but, not currently.

On the second trip to Menards I went with him and spied some Christmas Cactus.  Some had blooms like I hadn't seen before and as I looked at them I thought "life".  Needless to say when he came back with the needed screws, a purple one and a yellow one had found their way into the cart.  I told him they made me think of life and one was going in the bathroom by the whirlpool.  I picked two that are full of buds and I can't wait to see them all open.  The first Christmas that I was a mother my dad brought me a Christmas Cactus and I enjoyed it for years, hated to lose it.
Also, last night we called our friends, Mark and Helen to see if they could go to a movie with us.  Mark said he'd give us a call when Helen got home from work.  He wanted to go but she may have a lot of work so he had to check.  When he called later to say they couldn't go, I teared up.  I'm still trying to figure this one out.  I was okay, I had an enjoyable evening but for that moment when he said they couldn't I almost cried.  Big Baby! (sidenote: we no longer are in touch with them at all, they’re older than us and I think my cancer affected her a little much)

I spent the evening reading one of the Cancer books we got and have spent most of today reading it too.  It's very informative; it's about 1,000 pages long and I swear it's over my lifting limit.  But it's full of a lot of good information, tips and strategies. It's written by Peter Teeley and Philip Bashe and has foreward by George H. W. Bush, The Complete Revised and Updated Cancer Survival Guide covers the 25 most common forms of cancer.  I'm 650 pages into it but I've skipped things that don't currently pertain to me, still that leaves me with having read hundreds of pages.  I had no idea that Mrs Barbara Bush sits on the board of trustees at the Mayo Clinic, nor that they lost a young daughter in the 50s to leukemia.

Another great book I'm enjoying is help me live: 20 things people with cancer want you to know  by Lori Hope.  It's aimed at the loved ones of people with cancer and much shorter than the previously mentioned book.  If I'm not careful I'll have all four books read by Monday and have to twiddle my thumbs.  Luckily, I see my regular doctor on Tuesday so I can always go to the library for more, just can't highlight in them.

What I'm seeing in these books is these people knew people with cancer before they were diagnosed and most had a family history.  I don't know anyone but me with it.  I talked to the Cancer Hope Network and they set me up with a survivor to talk with periodically.  I was amazed at how well they matched us, she's 37 and had colon cancer at 32.  She has given me some food for thought and some ideas (we've spoken twice) but I don't think I'll hear from her again unless I call and make the request.  I wonder if going through this with me has brought back her own fears and worries.  I sure hope not.  She suggested, and I love this idea, that each time you go for a treatment you treat yourself to something nice.  You're doing this crappy thing, that you have to do but is not enjoyable so you must make time to do something enjoyable too.  Made sense.  I'm thinking of places I can go to take photos on days I feel good.  I'd love to get a new book each time but that could get costly.  We're looking at about 8 months of treatments, I need to figure out at least a few cheap or free ideas.  Especially since we'll be spending so much on gas and hotels just getting the treatments. (sidenote: At the time I was going through all of this I really hated for any money to be spent on me - I didn’t think I would live much longer and didn’t want any money wasted on me.)

I am laying around here, bored bored BORED out of my mind so I've been digging up things to do, like sew, read, write, etc.  I'm hating this feeling of helplessness right now and I need busywork.  My husband and kids are running all over doing things and I've been pushed to the role of doing nothing.  I've labored hard on this house too and it's driving me crazy to just sit and wait for everything to be done and not lift my own finger to help.

Oh, the appraiser has decided to come next Wednesday by the way.  So you can imagine the scurrying going on here.  Dennis has to be out of town Tuesday and Wednesday so I get to show him through the house and I'm going to have to have Haden and Khris be my arms and dust, mop, etc Tuesday evening.  I need them to bathe dogs too, they are smelly puppies.  I can't lift the dogs and no one else seems to know how to bathe them.  Hopefully, I can get Haden to lift them to the kitchen sink then I can bathe them.  It would be nice.  I just wish he wasn't coming so soon.  Peter (at the bank) sounded like it would be a couple of weeks before he came.

I can't wait to decorate for Christmas.  I love going to get the tree and this year I can have a really tall one.  I'm so excited.

Passing the time with Counted Cross-Stitch


posted Sunday, 20 November 2005

Not much exciting happening but I thought I should let you all know I'm still alive.  :)  I'm feeling less pain each day but still can't stand for long periods.  I promised Amber I'd take pictures of the puppies in the snow.  Well, I found my camera and it's charging so I'll send my son out in a bit to snap some of them.  The snow is melting a little so grass is starting to show.  It sure was prettier with the whole yard covered in white.

I'm still reading the books and actually have been laying in bed sewing.  I've done counted cross-stitch for years although I haven't done any since moving up here.  All my sewing supplies are packed but I had Dennis help me pick out a kit that has the pattern, floss, material and needle in it so I could lay around and sew.  It feels good to be stitching again.  I used to love to pass the time that way, have just felt guilty and lazy trying to do it these last few years.  But, as I said I'm bored out of my mind so I can be comfy in bed and stitching away and not have to feel guilty right?  :)

Other than that, the most exciting thing to happen in the last two days is that I shaved my legs.  :)  First time since before surgery so that's an accomplishment too.  In fact I apologized to the oncologist last week that I hadn't shaved under my arms recently but assured him I had put on deodorant.  I'm finding that none of the cancer doctor's have senses of humor but maybe I can change that.

Shunt/port for chemo


posted Tuesday, 22 November 2005

I meet with the surgeon Monday afternoon to get a port placed in my chest (or arm) that will remain there for the duration of chemo.  Through this port they can do IVs and the chemo and draw blood so I don't have to be stuck continually.  From my understanding it can be hard to find a vein after a few chemo treatments and I have bad veins to begin with.  They will teach me how to care for it and such so I don't get an infection that would make it necessary to take it out.

Tuesday morning I will get the port placed during an outpatient procedure.  This line leads directly to the heart.  Some ports are completely under the skin and others have the cap sticking out.  Either way it's supposed to be easier on me than a regular IV done each time.

Tuesday afternoon I meet with the oncologist once again and he will start my first chemo on Wednesday morning.  Sounds like most of my week is taken up.
They say that you should be actively involved in your cancer treatment therefore I have been reading a lot and learning much.  I know this is what the experts believe to be best but I think maybe it instills a little more fear, at least right now.  Supposedly, it should lessen fear of the unknown but instead I find out side effects and dangers that I didn't know existed.  I do really well day to day just living and reading and learning but I still have difficulty with the reality that what I'm learning about pertains to me.  It's possible to "forget" or "ignore" the Cancer day to day but when I get a new appointment the panic sets back in.  As it gets closer to the appointment I really feel like running away but know I have to tough it out.  When I get back to the hospital my anxiety gets greater and greater and as each procedure happens I am really wiggin out.  Then they're over and I can go back to pretending I'm normal.

I saw my regular doctor this morning and she gave me ambien to help with sleeping from time to time.  I'm having trouble sleeping so she said I could use this as needed, especially the night before procedures when my anxiety is the highest.  She also gave my husband and me flu shots and I need to schedule the kids to get them too.  Since my resistance will be down during chemo it's very important I don't get sick.  The oncologist already told me I have to take my temperature regularly because any trivial infection has the potential to be life threatening during this time.  She also gave me the pneumonia vaccine.  Looks like I'm set to start chemo whether I want to or not.

a little miffed


posted Tuesday, 22 November 2005

I asked my regular doctor today if I should increase my calcium or do anything to help the osteo during the chemo, to keep it from getting worse.  Her response was that I should concentrate on the cancer and the osteo will be okay for the 6 months of chemo, then I can deal with it.  I don't want to do it that way.  I want to do whatever I can to keep it from getting worse during the chemo because I think the potential is there to get worse.  Believe me, I will be asking the oncologist the same question.  I comprehend that my life has to revolve around the cancer currently but I think I shouldn't let other things slide because of it or I may have bigger issues to deal with later.  Also, I'll admit that maybe focusing on the little things, where I can have some control, keeps my mind off the bigger problem, where I have no control.

Worries and fears


posted Wednesday, 23 November 2005

You all amaze me with your dedication to checking in on me and giving words of support.  I hope you all know how much it means.  We've only lived in WI for 2 years and due to the fact that I don't work and my husband works all over the state we haven't made many close friends in our area.  Some days I wish I had a friend to hang out with and cry with and laugh with - in person - I know you guys would be here if you lived closer and that's a comfort.  I'm okay with any of you having my address and it would be wonderful to hear from you that way too.

I hate heaping all of this on my husband and kids.  It feels so unfair for my teenagers to have to think of my health at a time when I should be helping them spread their wings.  I'm sure it would seem unfair no matter what their ages were but I hate it that it's Mikal's Senior year and we have a hard time thinking about the things he needs to get done in amongst everything else.  I'm still recuperating from the surgery and am having yucky days now, I dread to feel the yucky days of chemo.  I want to be an ostrich and just bury my head in the hopes it will all go away.  Can you believe I still keep asking the doctors if they're sure it was cancer?  I'm sure they've dealt with all kinds of people, so I'm probably not the first.  I don't want to do any of this.  I want to throw a temper tantrum and have my husband and mom wrap me up in their arms and tell me I don't have to but they're here doing the right thing and saying they understand but I still have to.  It's so tempting to run away before Monday.  I don't want to do this and I don't have a choice.  Well I guess I have a choice if I want to die soon, same as not having a choice.

I hate that my family is so far away and they're worrying about me and feeling helpless with the distance and it's my fault they're far because I moved.  They didn't.  Yesterday I couldn't reach my mom or grandma on the phone and I was worried that something had happened to one of them.  I worry that if something happens to one of them it will be my fault because of the stress of worrying about me.

I worry about putting information on here that will further worry my family if they read it.  Especially my daughter in Pennsylvania.  I try to make sure I've talked to them all about my different feelings and such before posting it so they won't be scared reading it here instead of hearing it from me.

I worry that my kids don't understand the gravity of the situation or that they understand it too well.  And I'm sensitive to the way people, especially the doctors, relate to me.  Like yesterday, when the doctor was suddenly unconcerned about my calcium (a few months ago she was concerned and adamant) I felt she was giving up on me.  I don't want to hear the doctors giving up on me.  I haven't.  I'm sure that's not how she intended but I actually almost snapped her head off right away because that's how I took it.  Like, don't worry about the osteo, the cancer's gonna get ya long before that.

Haden is my babysitter today and he's been doing great.  He's 13 and taking care of me.  Should be the other way around, shouldn't it.  I spent most of yesterday shaking and chilling - nerves I think and with Dennis gone working he wasn't here to lean on.  Finally, Haden helped me bathe Fibi and she spent the evening in bed with me.  She brought me great comfort but don't tell her that JoZe would have brought more.  JoZe would have laid beside me through all this and never left my side.  Fibi on the other hand wants to get up and down off the bed which is a production because I have to get up to put her on each time she comes back.  And I don't trust her on the floor because she's been having too many accidents since I got sick.  While Fibi brought me comfort I also felt guilty that I didn't have the strength to bathe all the others and get their lovings too.  I asked my oldest son to bathe a dog - I figured 3 dogs and 3 kids, they could surely do that but you would have thought I asked him to cut off his arm.  He unloaded the dishwasher without being asked but no one else got a bath yet.
I wonder when I'm going to find the time and energy to take the kids for their flu shots.  I don't feel like leaving home some days and my husband is loaded down with work and the house.  It's important they get them though.  Mikal asked if his girlfriend should get one too.  She's here a lot so I told him it wouldn't be a bad idea.  Mostly I told him if anyone was sick they wouldn't be able to come over.  He has a cold right now, hopefully it clears up soon.  Usually during December or January I get a sinus infection and I usually wait so long to go to the doctor it becomes an upper respiratory infection and ear infection as well.  Hope that doesn't happen this year.

Sorry for being so longwinded I guess you all are catching it since Dennis is gone.  He'll be home tonight and tomorrow we're going to Mark and Helen's for Thanksgiving.  We're taking the turkey so I get to look forward to smelling it cook all morning.  :)

HAPPY THANKSGIVING


posted Thursday, 24 November 2005

This morning is heaven smelling cooking turkey while being kept company by Fibi and Dennis. All the boys are enjoying fresh coffee while I enjoy a diet coke - I don't drink coffee. Doggies seem happy and content. So far this morning, Life is Good!! I hope everyone else is experiencing a life-is-good moment as well. Have a wonderful holiday full of family and friends.

Running away from home


posted Friday, 25 November 2005

I keep trying to get my husband to help me run away so I won't have to go to the doctor Monday but so far all he's offered is to take me up north or to get a Christmas tree and with either one of those I know he'd still drag me back for Monday.  :(  Yesterday was very nice, even though we couldn't be with my family in Missouri I knew that my family was all together celebrating while we were celebrating up here.  They were thinking about us while we thought of them and I imagine they had many laughs because my dad and Uncle Larry love to make them all laugh.  We had a good time here at Mark and Helen's.  The kids (theirs and ours) all scattered after eating leaving Mark and Dennis watching the game in the family room while Helen and I enjoyed the fireplace in the living room.  Unfortunately, when they bought furniture for their new house they got totally comfortable recliners and couches and it was hard for all of us to not fall asleep.  Helen gave me a new book, The Lovely Bones, which she had told me about a year ago and I've been wanting to read it ever since.  I started it this morning and it's very good so far.  Helen says it's a kind of mystery.  The story is told from the view of a 14 yr old girl who has just been murdered.  So far it's really good.

Dennis got me a book a couple of weeks ago I'm anxious to read too, it's a Koontz book so I know I'll love it.  I kept looking at it and thinking I wanted to get it but then it looked like it was just  Tick Tock renamed so I didn't buy it.  After exploring a little more it appears to be a continuation of the story, or at least has the same characters.  I guess I'll see when I get around to reading it.  Oh, the name of this one is Life Expectancy.

Another recent addition to my library is a book Helen got a couple of weeks ago called The Kite Runner.  She had to fly to PA for business and some people on the plane were talking about it and what a great book it was so she got it for me.  I figure Dennis and I will read this one together when we're done with Dust to Dust by Tami Hoag.

Ok enough about books for now I guess, don't wanna bore you all.  :)  I have convinced Dennis that it is imperative for us to get out in the snow and go get some ice cream.  He's now made mention of it to the boys and the youngest is running through the house yelling, "Yay ice cream" so i guess I better go if I want him to shut up and believe me I do.  Don't worry Haden, mom still loves you!

Christmas Tree


posted Sunday, 27 November 2005

Saturday morning we piled into the car to get the Christmas tree.  It has been a tradition that every family member living in the house goes to get the tree.  But this year was different.  Mikal and Khris didn't go and I couldn't take four dogs myself so it was only Dennis, Haden and me.

We went to the same tree farm we did last year, about 30 minutes away.  There was snow on the ground but no snow in the air and the sun was shining so it was warmer than last year.  We sat on a hay bales on a trailer pulled by a tractor and got dropped off by the "good" trees.  We began our search for the perfect Christmas tree.  I worried I wouldn't be able to endure this task but I did.  I was very happy to find the perfect tree and I kept finding them so we could be done sooner.  And very happy to get back to the car.  But very glad I got to be a part of it.

In past years, I have had to be reminded of ceiling height and width of room as the trees always look smaller in the field than they do when you get them in your living room.  However, this year we have a vaulted ceiling and the ceiling height in that room measures 9-14'.  So we began our tree judging, trying to remember where potential ones were (yeah right), while searching for "better" ones.  Several trees appeared to be perfect then Dennis would declare they were only about 10' tall.

Finally, we found our perfect Christmas tree.  Dennis and Haden sawed it down and we dragged onto the trailer when it came to pick us up.  It was the biggest one we saw getting stuffed through the netting machine after being shook.  And a lady teased us that we would be like the Griswold's (National Lampoon's Christmas Vacation) when we unwrapped it.

We picked out a pretty wreath and a couple bunches of boughs.  Each year we buy at least one new ornament at the tree farm and this year I found a cute snowman and a stocking.  Although, the size of this tree is SO much greater than past trees I think it's going to look pretty sparse or we're going to have to load up on ornaments.  In the past, we've used candy canes as fillers on the tree and the children have gobbled them down.  But, we have discovered that the children doing the gobbling must have been the children who moved out, as we still have most of the canes from last Christmas.

Khris and Dennis managed to get the tree off of the Durango's roof and into the living room but here came the tricky part.  Into, our tree stand and upright.  Remember, we've had smaller trees before - about half the size of this one.  This perfect tree is about 13' tall.  So, being the brilliant people we are, it hasn't occurred to us that the stand we have might not be able to do it.  But after the tree is in the stand and upright we discover no way to make it stay upright.  Ever the improvisors we have Khris hold it up while Dennis climbs a ladder and ties the tree to the wall.  Hey, it worked.  I just have to figure out a way to cover the twine and next year we'll have to get a bigger stand.  If only we had been thinking Christmas tree when we built this house we could have made the floor lower in that area and watertight and had a permanent built in stand, covered by flooring the rest of the year.

Doctor's notes


posted Monday, 28 November 2005

Yesterday, against Dennis' wished I climbed the ladder and put boughs along the top of the wall that divides the kitchen from the living room.  I was able to place a bough just so, so the twine is fairly covered.  I have taken photos and will get them on in a few days but right now I really am supposed to be packing to go to the Mayo again.  Short recap:

today 2:30 - department of surgery consult - i think surgery is in the morning

tomorrow 11:15 - blood work and 1:00 division of medical oncology evaluation

wednesday 8:00 - chemotherapy

According to some paperwork i got from the oncologist I will be undergoing "FOLFOX for 6 months and possibly radiation for a 5-6 week course in combination with concurrent infusional 5-FU"  I'll also be getting Oxaliplatin when I'm not getting radiation.  In reading the doctor's notes it was pretty hard to read the following:

"It is our hope that with the combination of aggressive chemotherapy and possibly radiation that we may increase her survival chances to over 50%"

It's one thing to hear it, even to read it in a book, it's quite another to read it in doctor's note referring to you.  your name throughout the notes and your information, there's no denying he means your survival.  Whereas in the books, you can safely think well, that percentage is reached from people older than me or with other issues or blah blah blah.  There's no safe place in doctor's notes.

port installed


posted Tuesday, 29 November 2005

Just a short note to say I got the port put in this morning. Lots I want to say but I'm not feeling real whoopy tonight so it can wait. The surgery went fine and I go in the morning to begin the Chemo. There were 2 small incisions made to install the port - one near my collarbone on the left side of my neck and the other on the left side of my chest. My neck hurts a lot. I had issues with the anesthesia this time making me sick. Unfortunately, a couple of parking lots were witness to this but thankfully not the inside of the car.
Plan is to go home tomorrow once they get me all hooked up to the chemo pump so I'll be talking to you all then.