Thursday, December 20, 2007

Seems like a Friday

Cisco did well at the Vet's yesterday. He seems to be healing ok and no infection. Good news. He just meow'd for the first time since he was attacked! Music to my ears! I was so afraid that his vocal cords or some nerves had been damaged. But when I came home this afternoon he wanted food (another good thing!) and I heard two soft meows!

I've had a bit more discomfort than usual. Pains up under my ribs and on my right side. Prolly due more to stress than anything. Hopefully they will not bother me over Christmas. I have NO idea how I am supposed to pay for all these medical bills! I thought it was next to impossible to get coverage for MY cancer, but Vet bills and surgery are way over the top! It's going to be something like $2000 or more before all is said and done. That kind of money is out of my league! It's like two months pay if I was full time! More like 5 months at my current rate!

I'm finding it more difficult than usual to deal with issues like this. My coping skills are pretty worn down I think. I'm thankful he's doing well, and can't imagine not having him as my buddy at home, but money issues suck!!

Monday, December 17, 2007

What a weekend!

Cisco is doing better, but a more terrorized cat I've never seen. If there is so much as someone walking by, or a noise outside, he panics and runs to hide for an hour or so. He's eating a bit more. I have to take wet cat food and water it down into a "gruel", but he eats maybe 1/4 cup.

We spent most of the time wrapped up in a quilt on the couch. He wants to stay close to my body so we snuggle on the couch watching TV. Not a good way to get anything done, but it feels like the right thing to do to support Cisco's recovery.

I'm exhausted from dozing on the couch and not really sleeping.

The Animal Control man came to the door again on Saturday, saying he had one more question. "Do I think the dogs are dangerous?". How on earth do I respond to that?
They were certainly dangerous to my cat who was sitting on my stoop. The neigbors chased them away earlier in the day when they threatened Their small dog. I hemmed and hawed and said I really didn't know, that my concern was that the owners were responsible for the damage to my pet. He said he'd be serving the papers today if they were home (they were). I don't know how things proceed from here, but I assume I will hear from the court eventually.

Wednesday I take Cisco to the vet for a check up. I hope they will say he's out of the woods, but I quake with fear every time I see his poor damaged body wobbling around the house.

Saturday, December 15, 2007

More about CISCO

I got Cisco, my 10 yr old cat, home last night.
He's going to be ok. He's very shaky, and in pain and fear, but today is improved over yesterday and I'm hopeful that will continue and he'll mend fine.

The vets had to shave his neck and shoulders to treat the bites from the two neighbor dogs who attacked him. Then they had to surgically place a wire through his jaw to mend the broken bone. He can still eat and drink, but the bones are wired together. See photos.




So he's bald about the neck and shoulders and I'm bald above the neck! What a pair we make!


Thursday, December 13, 2007

Cats and Dogs

I had probably one of my worst nights last night.
My cat of 10 years, CISCO, is used to a short "constitutional" outdoors after dinner most evenings. As the night starts earlier and it gets colder, that time outdoors gets very short.

Last night I let him out about 6:30. It was supposed to be a cold night here in Tucson so I went outdoors after about 10 minutes to call him back in - if he wasn't already waiting at the door.

As I'm heading to the front door I hear an ungodly ruckus and huge barking. It sounded like a war outside my door. I open it to see two HUGE blonde dogs attacking my cat. ON MY FRONT STEP! These dogs had Cisco down and both were at his throat. They were maybe 2 feet away. I was petrified! One dog looked up at me and then returned to Cisco's throat. I started screaming! Fortunately my noise must have scared them, so rather than attacking me with their charged up adrenelin, they ran off down the alley. Cisco tore off across the yard the other way.

I knew who the dogs were, I was pretty sure. I hadn't heard them barking as they usually do two houses down, but they have been loose before and are unique in our neighborhood. I immediately started calling and whistling for Cisco, but I knew that since he is such a mellow cat and avoids noise, cars and any commotion that it would probably be some time before he returned - IF he could return. IF he wasn't dying, IF he didn't bleed to death or freeze, or ... I was in a panic to find him.

It was cold. My neighbor happened to come out of her house just as I started calling and she immediatly put off her grocery-store trip to help me. We called and searched for Cisco for almost three hours. We ran into a neighbor on the next block who saw two blonde big dogs twice earlier in the day. She said she'd recognize them again and believed they lived up near us. We called and searched, freezing our butts off.

Finally I had to go in and warm up. I'd left my door open in case Cisco returned when I was out of sight, but no such luck. My house, of course, was also freezing by then. My next door neighbor on the other side came home and said he thought we should check HIS back yard which is fenced with wood. As my neighbors went around back to do that I came back outdoors to join them. As they came back up the alley, one's flashlight happened to go across the street into a bush & cactus that I'd searched before, but we saw the reflective eyes of a cat!!!!

I went up to Cisco who was laying there patiently, but he did not get up. He let me get next to him and after a minute, complaining, he let me pick him up. I first felt puncture marks around his neck. As I talked softly to Cisco, my neighbor grabbed my keys and pulled my car out and we rushed to a nearby emergency vet office. In the car I noticed a cut on his mouth and that his mouth didn't look "right".

The kind people at the pet hospital took x-rays and determined that Cisco was very lucking indeed for such a brutal attack. His central jaw bone was broken. He had to have surgury and his jaw had to be wired. It will have to be that way for 4 months.

The good news is that there was no internal organ damage, no other bones broken, the punctures only deep enough to form air pockets but not bleed much or pierce the body. We were lucky that I was there to see the attack and stop it almost immediately. Another minute or two and I'm sure that Cisco would have been crushed dead.

He's still in the hospital right now, and they want to keep him another night as they still can't interest him in trying to eat and they want to know he'll eat before they release him. I can't tell you how many gallons of tears we've spilled for this charming, well-loved little guy.

I also hate to tell you how the dog-owning neighbors are trying to pretend it wasn't their dogs. After asking me several times if I saw the dogs who attacked (yes indeed) and if I could recognize them (oh yes) they left their house with no dogs in sight - indoors or out. A little later they returned and all of a sudden their two blonde dogs (boxer?) were in the front yard barking their heads off at me across the street where I'd been hunting under a bush.

As I crossed the street the woman asked me again if I recognized her dogs -"where they THESE dogs?", as the ones who attacked Cisco and I said I sure think SO! She said (finally!), "Oh, it couldn't have been OUR dogs as we never let them out." Right. and accidents never happen. (And I don't have stage 4 cancer).

A bit later the dogs disappeared entirely and didn't come back until late this morning. It appears that the neighbors are going to deny responsibility. How sad is that? Unfortunately for them, the lady had asked me to look at them again to see if I recognized them. By the next week or so I might not have been absloutely positive, but thanks to her showing me the dogs in the evening light, I could see the same one looking at me the same way it had looked at me before. Nuff said.

It's 5pm. At 6pm I can go "visit" Cisco in the hospital. Please say a prayer for his fast recovery. I need my cat to help me with this cancer. He's the only one that makes home, "home".

Monday, December 10, 2007

Anyone ever tell you that you DON'T have Cancer?

One type of cookie down, one chilling in the fridge.

While engaged in these holiday domestic duties I've been reflecting on my current "on hold" status as a cancer "survivor" (Still not entirely comfortable with that term!).

Having a cancer of unknown primary - CUP - is bad enough. If you tell someone you have cancer, invariably you are asked what "kind". Then you have to either go into an explanation of what you don't have, and generally it's more than they wanted to know, or you just say where it is located - in my case, in my liver.

But now I get to compound that issue by being in a no-man's-land state of no growth. So, am I in active treatment? Is this going to last very long? Does it mean I might be "healthy" for a while? What?

It's led a couple of people I know to ask me if I'm SURE I have cancer in the first place. Now how in HECK are you supposed to answer that? Well, they took a biopsy and checked it twice and determined they were "naughty" cells. (Hey, it's the holiday!)

They are "slow growing" so much so that there's been very very little change since they first found the growths. Does that mean that they are not growing at all? Does it mean they are not actually cancerous? Does it mean .... what?

It DOES mean that the two different chemotherapy protocols I've had have NOT appreciably changed anything. OR.... maybe they did! Or maybe one did but we don't know which one.

I can see why some family and friends are wondering if I've gone through the last 4-5 months for nothing! Since I'm "invested" in all the fear and remorse and pain and loss so far, I don't "want" it to be for "Nothing". On the other hand..... I'd love to just turn the clock back to July when I was blissfully ignorant of anything in my liver that didn't belong there.

I see more significance and truth to the hat I purchased from the "Crazy Sexy Cancer" website all the time. The hat is a knit cap totally unremarkable except that embroidered along the front is the phrase "FUCK CANCER"! No kidding.



Note to those who haven't heard of this yet:

Cancer Survivors Kris Carr and Erin Zammett Ruddy

Crazy, sexy…cancer?
It’s quite the feat to laugh in the face of a deadly
disease, but that’s what Kris Carr—the woman behind the new documentary Crazy Sexy Cancer—does every day.


I love this whole interview at http://www.glamour.com/health/articles/2007/08/crazysexycancer also see Erin's Blog at: http://www.glamour.com/lifestyle/blogs/editor

One of the interviewer's (Erin Zammett Ruddy) questions:


ME: What do you do now when cancer gets to you? Buying things I don’t need and can’t exactly afford, like a third pair of Bruno Magli sandals, always helps me.
KRIS: Shopping is often my cure, too! Or I dust glittery powder on my face and dance to hippie music. I also pray, do yoga or dive into an inspirational book. If I let a blue mood run rampant, before I know it I’m obsessing about the color of the satin lining in my coffin—will it match my dress? That’s when I feel like Alice in Cancerland falling down the rabbit hole and just have to stop. Seriously, you should try glitter; it’s incredibly healing.


I may not be in the age group these women target (Under 30 more power to 'em) but I'm right there with the sentiment! (I WAS a hippie!) So I wear the hat even if I cringe sometimes that some little ol' lady at the Cancer Center will be offended. Or that someone will yell at me at the grocery store. OH WELL. Where do I get the glitter? :-)

COOOKIEEEEEEEEEEEEEEE


I'm baking cookies today!

You KNOW I must be feeling better. I have the day off. Yesterday (Sunday) I prepared the dough and filling for one of mom's classic holiday cookies - Date Nut Pinwheels. DELISH!

You make the dough and filling separately and chill them overnight. Today I rolled out the dough, spread the (very thick) filling and am now freezing them for a bit so they will slice easily.


I've made these a million times, but I had to call my sister Friday night to make sure I had MOM's recipie. Janel was up late packing for her ski trip to Montana, so she wasn't upset with me calling late, and fortunately (such organized sisters) she had it right at hand and it took only three minutes away from her packing. Hope there's a lot of snow in Montana this week!


Yesterday I called my sister-in-law, Carol, to get the recipie for Nut Butter Balls. Others call them Russian Tea Cakes, Mexican Tea Cakes, etc. but I wanted the one that makes real moist, melty butter cookies, not these dry crumbly things most people have. Anyway, Carol had her mom's recipie right to hand and it matched my memory of the proportions my mom used to use, so those are next to put together.


Third will be Chocolate Chip Oatmeal Cookies - my personal lifetime favorite cookie. I hope I can get to them today, but if not, I still have lots of time before I leave for my daughter's place on the 21st. I have to make sure to not eat them all up ahead of time!
Time to slice the pinwheels - more later....


Saturday, December 8, 2007

Wow! Guess it's been a while!

I've not blogged for a month! It's hard to believe that cancer has not been SO on my mind that I would not have time to blog!

The fact is, cancer is very much on my mind, but I'm in a "break". I had a CT scan in November that showed NO CHANGE. Nothing shrank and nothing grew.

So my doctor said that I might as well take 6 weeks off from chemo and do another CT scan on January 3rd. I meet with her on the 10th (My daughter's birthday - hope that's a good omen!) and we'll see what has happened.

I do NOT like this current state of affairs, but it is better than to find out things are getting worse, so I've just gone about things and tried not to worry.

I bought a new computer in the meantime. A MAJOR and not really affordable purchase, but more about that later. I'm right now in the process of setting up email, addresses of family and friends and all of that sort of thing.

I will post a "real" post tomorrow.
tata

Friday, November 2, 2007

CHEMO YESTERDAY

I spent all day at the Arizona Cancer Center yesterday. Dr. Appt., blood draw and then 6 hrs of chemo. YUCK! It was Taxol and Carboplatin again, so I can expect to be in a bunch of pain by tomorrow or monday.

My stupid drug store is being pissy about my prescriptions. Believe it or not, the night before I left I picked up the antibiotic my primary had given me for my wheezing, congested lungs. I was packing about 9:30 that night and decided to divvy out all my pills for 10 days in a container so I didn't have to bring all the bottles. Good plan. The antibiotic had 30 pills - 3 per day for 10 days. Easy, I was going to be gone for 10 days. As I'm putting them into the container, I only come up with 25! They shorted the prescription! I called right away as this CVS closes at 10pm. The pharmacist said it was too late to fix. I said I'm leaving at 6am for 10 days she HAS to fix it. She finally said to come to the window as they wouldn't let me in the door anymore. I only live 1/2 mile away. I dash out (just the thing I wanted to be doing!) and go to the window. She put 5 more pills in my bottle and what really got me, is that she acted all cheery and didn't apologize or anything. OOOPS! You just mis-filled a presecription that is dose sensitive lady! That's not something to just blow off!

So I'm annoyed today that despite getting paper prescriptions yesterday, they have to call in to verify them with my Dr. She decided to give me paper rather than call them in just to avoid this issue! So of course, here it is almost 1pm Friday and they still are not ready. The guy promised to call me back within 1/2 hour. We'll see. These are NOT heavy duty drugs, not narcotics or anything, so I'm surprised at the delay. Good thing I have 24-36 hrs before the chemo after-effects hit me!

I'll be dropping off my pictures when I go in to pick them up, so shortly I'll post more about my trip - including the great adventures in urban life while visiting my daughter in Chicago!

later, Patti

Tuesday, October 30, 2007

Family Pictures








As long as I'm posting pictures from Janel's "stash", I might as well share some of the other ones. These are of my parents, Edward & Doris (Sweeney) Bush, from their younger days.
These are from Ladysmith, Wisconsin in the 1940's.

Most Hair Award


I lied, THIS is the most hair I'll ever have! (That's me, off to the right, bleached blonde hair, leaning on my hand talking to someone.)

Back in 1968-69 when I was a freshman in College at the University of Minnesota was the ONLY time in my life that my fine, straight hair was in style. This was the birth of the hippie days (in Minnesota at least). The Whole Coffeehouse was in Coffman Student Union on the campus. I ended up getting very involved in it and became an MC at one point.

Janel and I went through a box of pictures she has of the family last night. I wanted some older pictures of myself, my mom & dad, etc. for a little album I'm putting together for my daughter, Tara. She had this one which I didn't remember at all! Those were the days! .

Home James

Wow, here it is Tuesday October 30th already! I'm scheduled for a 7:20 flight back to Tucson today - and I'm not ready to leave! It's been great being back in Minnesota. I cannot believe how refreshing it is to my eyes and soul to see green grass, "real" trees, water, and of course my family.




(The posted picture is of me in grade school. Probably 5th grade??? Not sure, but it's the most hair I'll ever have!)

I'll have a whole travelogue to post later, but this morning is my first chance to post here and then I have to go pack and get ready.

Cancer-wize this last few days has been traumatic because my hair is falling out. Big time! Saturday, my sister Janel had scheduled me for a haircut with Mick. Mick has cut her hair (and mine if I'm in Minneapolis) since we were in college. But Thursday I noticed that there was more hair than usual around when I took a shower at my daughter's home in Chicago. Hmmmmmmmmmmmmmmm.

By Saturday morning it was obvious. I'd avoided the issue for two days, but when I demonstrated to Tara that it was indeed coming out and grabbed a bit from the side of my head, I was SHOCKED to see a whole tuft come out, not just a few hairs. AUGHHH.

I still went in for my appointment at Mick's salon, Avante (on Lasalle across from Macy's downtown), but when he came to my chair I told him that things had changed and I didn't know what to do. He went and meditated on that a few minutes and came back and suggested we cut it really really short and see how long that lasted. At least I wouldn't be as annoyed with hairs falling in my face. So I got a boy cut for sure! He said "don't be scared, but I'm going to buzz the back". It was scary, but the front still had some style and looked good with what little blonde was still there. And it did lessen the messiness.

Well, by today, there is no denying that it is going fast. Everytime I touch my head in any way, more falls out. My bed pillow has a fine layer of short hairs. Janel insisted that I look at some of her scarves. I didn't want to, but the fact is that after I take my shower this morning, I may not WANT to go on the plane looking half-shorn. We'll see.

By far this is the most emotionally traumatic issue I'm facing so far. Losing my hair means I will "look sick". Up until now, you wouldn't know I am in chemotherapy by looking at me, and my energy level has been ok enough to keep a "normal" lifestyle. But with my hair gone - there's no denying that something is happening. Ewwwwwwwwwwwwwwww..

Thank god your hair is on your head, not some other part of your body that you can see all the time. When "I" look out at the world, I don't see what the world sees. I don't see my face, hair, eyebrows, etc. This is a good thing. I just have to learn to deal with the fact that other people won't be seeing what I "see" in my mind. That's been true, really, since I gained weight and got past 45. I still "see" me as 40 lbs and 10 years less than I am anyway, right? So what's a little hair????
(A LOT!)

Later..........

Monday, October 22, 2007

The ocean in Milwaukee

Here I am in sunny Milwaukee Wisconsin. I've been visiting my bff Kristin for a couple of days, and in FACT we had the most PERFECT day yesterday. The temperature got to alomost 80 degrees! It was warm, sunny and beautiful with lots of green and an acceptable amount of Fall reds, yellows and oranges.

Kristin knows I love and miss the ocean. So she designed a "day at the ocean" for me in Milwaukee. We went to the shores of Lake Michagan near downtown where they have a very lovely park. They also have a breakwater that extends out into the lake quite a bit!

We walked to the end of that breakwater and sat on these huge boulders and let the lake spray our legs and faces. The water was wavy enough for some surfers near the shore (believe it or not!) and did its best to give us the illusion of the ocean. After all, you can't see to the other side!

The day was so perfect, so warm and sunny, it was always in our thoughts and on our tongues - "What a Perfect Day!!" Incredible.

We spent several hours mid-day doing the lake thing, and then stopped for iced coffee and sandwich/soup at a cute spot just off the lake. Again it was perfect. They have seating outside, and of course everyone in Milwaukee was taking advantage of the RARE high temperature for October 22nd! Alterra is the name of the place. Kristin could NOT stop raving about her soup - I mean it, she couldn't stop! My cheese & tomato sandwhich was also terrific, but I Could stop raving about it. :-) The iced coffees were terrific and we got to sit outside where they have a patio as well as GREEN lawn space to sit and eat your treats.

That's the other thing that has been getting me. From the trainride to Milwaukee to Kristins wood-surrounded apartment, I've been dosed in a plethora of green and trees. I LOVE IT!! It brings back all sorts of childhood memories, feels SOOO "at home" and is a total treat to my desert-deluged eyes.

Kristin has given me a weekened from heaven, an I love her dearly for it.

More later - on my way back to Chicago this afternoon.
Patti

Friday, October 19, 2007

All systems go!

I went to the clinic to have them look at my arm after all yesterday. It was still a bit red and tender, but they decided it was probably irritation of my vein from the chemo, not an infection. I took some more ibupro last nite and it's pretty much gone today. YEA!

Got that 3 mins to talk to my oncologist "off the books" which was great because we talked briefly about how the Taxol chemo went. When I told her how awful I hurt for 3 days she said "I tried to warn you!". Well, sheesh. Just tell me right out! It's gonna hurt like a bugger! I'm not mad though, I had gotten the idea pretty clearly that this chemo session would probably be worse in some way. We're all happy that for the next 2 weeks nothing more is gonna happen and my trip should be fine and fun! My only "after effect" is how easily I tire. Just walking last night from where we parked my car up to the (very fancy) resort where the banquet was, was a total mind-blowing effort!

Anthony, who is the young man I work with and gave a ride to the banquet, felt so bad because he chose where to park, and as an afterthought realized we could have valet parked, or he could have dropped me off. I didn't think of it either, I didn't realize how short of breath I've become! Anyway, it was fine. and the sweetheart fetched the car afterwards and I didn't have to walk anywhere in the high heels I NEVER usually wear! :-)

My boss didn't win the customer service award she was a finalist for, but WE know she deserved it, and we all had a good time at our table anyway.

Today I have errands and appointments, and then figure out how to pack for Midwest (cold!) weather. I don't want ot bring a big suitcase, so it's going to be fun to try and figure out. My flight to Chicago is at 6am tomorrow, so I won't be posting until I can find another computer.

Patti <----happy camper!

Wednesday, October 17, 2007

TGI Wednesday

I've not blogged for a few days mainly because I was too busy being miserable. This chemo got to me. I was hurting pretty bad - muscles and bones just hurt and wouldn't stop. Finally, yesterday that was pretty much gone, and then I was acid stomachy again. But still, MUCH less pain.

My poor sister had to put up with me being pretty cranky. I was so glad she was here though. Just being able to not HAVE to get up for a glass of water is a real treat. She did more than that, of course. She fixed meals, reminded me to take a pain pill BEFORE I was miserable, got me treats, watched TV with me and laughed at stuff which helped ME laugh at stuff. A "very nice thing".

Today I'm quite good. JB left this morning and I went to work. A bit achey, but wonderful compared to earlier. I found that the top part of my arm feels bruised or sore, and a bit warm. My sister and boss finally convinced me to call the Dr. office - since, duh, it's the arm they put the chemo needle in! (Would I have thought of that? I dunno!) They want to make sure I don't have an infection, of course, so I am warm compressing it tonight and will call them in the am. I guess I don't want to "complain" about anything because I want everything to be "well". I have to moderate that with some balance, I know!

The Dr office said the worst would be to have to take some antibiotics, that it wouldn't prevent my trip - that'd be wayyyyy to tuff to cancel!!!


So, I'm still planning to leave Saturday morning - I can't wait! This cancer stuff really shows you how much you can miss your family!

Hugs to all,
Patti

Sunday, October 14, 2007

Ok, Not so hot today

I guess I've been really lucky, but today - two days after my new chemo recipie, I'm not feeling too hot. Sort of like a lousy flu with headache and hip, shoulder, back ache.
Not fun, though of course it could be Much worse!

My sister Janel should be here very soon. It turns out she drove to Phoenix with a friend of hers and can stay over a couple of days before she has to get back to Minnesota! Two trips in a month! WOW! I reaally wanted to have everything nice and shiny here, but that's not going to happen I guess. I get up to do one thing and have to sit down again in 5 minutes.

I hope this doesn't last too long. I have to work this week and then the BIG trip for me to go back to the midwest is next weekend. I'm pretty confident, actually. Being able to go 3 weeks between chemos - even rougher chemos- seems like a LONG time in between. We'll see.

The big difficulty I have, emotionally, I guess, is how far out can I reasonably plan my life? I asked my Oncologist this on Thursday. No one knows, of course, and with an unknown primary it's even worse, but...am I foolish to take a trip at the end of October? Can I make plans for Christmas? My birthday? New Years? She said that I should be able to make plans for the holidays. Then she said that next year I should be able to make plans for the summer. WOW!! That sounded so good to me! I know it is no guarantee, but it's a lot better than thinking I'm going to be bedridden any minute or in to much pain to move!

I don't know how to go about living "this" life, I guess. I'm sure it's the same for everyone else out there too. How do you go about it?

Friday, October 12, 2007

New Chemo drugs today

Hi again,
It's 6pm Friday and I just got home from chemo. They dropped gemcitibine and added Taxol. They also gave me anti-inflamatory iv's to help ensure that I don't have an allergic reaction to the Taxol.

All in all I was there just over 6 hours. That's tiring just in itself!

Anyone else out there on Carboplatin and Taxol? I gather that combo is used for many diverse types of cancers... are they all adenocarcinomas? Whereever they come from?
Just wondering.

I guess I have to worry again/more about losing my hair on Taxol. My Onc didn't mention it when I met with her, but checking it out on the internet seems most did.BUMMER, I thought I was being lucky about that at least! Still crossing fingers.

I'm tired. I'm hungry but don't have a clue what to eat and don't want to cook. I did fall asleep for an hour or two while getting the chemo, that helped! My exciting Friday night looks like a TV movie and early to bed! {{{{{{{can't stand the excitement!}}}}}}
Hugz,
Patti

A Very LONG Big Day

It's just past 4am, actually on Friday. I mentioned that I had a CT scan on Tuesday and would get the results Thursday just before another chemo treament.

Well, that's not exactly what happened. :-)

Instead of the normal blood tests before chemo, they called me in to meet with my Oncologist first thing. RESULTS?? Well, no news is good news. There has been no growth in the masses in my liver. So, the Carboplatin/Gemcitibine combo seems to have at least kept them from getting any bigger. I take this as GOOD NEWS!

The tiny spots (1-3mm) ya millimeters! in my lungs have not changed either. The report said that really they couldn't see much. My doctor is not concerned about these and does not believe I have lung cancer as primary, but they mention them on each CT scan just in case there IS a change.

SO, my Dr is now recommending that we put the Gemcitibine "in our back pocket" since we know that at least it seems to be effective and stopping growth. Let's not wear it out. OK, so then what?

She wants me to switch to a once every 3 weeks series of a combo of Carboplatin and Taxol. Hmmmmmm. The idea is that the Taxol might actually SHRINK the liver masses. The side effects might be a bit more severe, but then I've not had very many side effects at all on the Gem, so I'm in pretty good shape to try it.

We went around a bit about scheduling since I want to go home and visit family from the 20th to the 30th of OCT. This was planned on my old schedule, and we set up the next chemo for next week. Ok, but I really wanted to be able to attend a banquet where my boss/company is up for a Wells Fargo sponsored award in customer service. so if I could avoid a 5 HOUR chemo treatment that day, sure would be nice!

While juggling a bit more, she mentions that actually it seems that if someone responds with muscle/bone pain from this new protocol, it tends to happen 3-4 days after treatment. AUGGGH! That would place me on a plane flight when it hit.

So, bottom line is that in a few hours I'm going in for this new treatment. 10am my time (currently Pacific). IT's now 4:30 am and I'm wide awake. Oh FUN

I've been having some heavier lung congestion than usual the last week or so, and when I told the Dr that she prescibed me dexamethasone (a corticosteroid) to take tonight and in the morning before I go in for Chemo. Seems to be keeping me up.

This whole thing started because I had a persistent cough and on and off heavy congestion, so it's just a timing thing that it's happening now I guess.

Conclusion for today? I think the CT scan was good news. I had all sorts of questions prepared for this appt. questioning why not do more targeted treatment in my liver, other kinds of treatment,etc. Her answers seemed reasonable to me, in that continuing to chemo my entire system can still get at the "unknown primary" and while I am tolerating it well and not growing the tumors, to work on finding a way to make them smaller. She assured me that that is not ALL in our aresenal. At any point we could target any area that starts to cause problems or switch to another methodology.

I worry a bit that I'm being a bit willy-nilly about all this, and maybe I am. There's so little information on unknown primaries and on liver cancer that is not surgically removed that I don't have much else to go on. Bottom line I guess it makes sense to me to be as aggressive as I can as long as my body is giving me "go ahead" messages.

One odd note - which makes me wish I understood more about CT scans. my Dr mentioned that they saw THREE masses in my liver this time, not Four! Was the other guy hiding or what? Weird!

Ok, gonna try to close the peepers for a bit. Wish me luck tomorrow!

Saturday, October 6, 2007

Disability

It's Saturday, and I am needing to work on all this paperwork from Social Security today. YUCK! Because I am diagnosed with a Stage 4 cancer, I have to prepare for the very real possibility that I will become completely disabled at some (hopefully not too soon!) point. Right now I'm only managing to work part time. Partly because of the Chemo treatments themselves, and partly because of the fatigue they cause.

I'm so VERY fortunate right now that I am in very little pain. I'm also fortunate that I have such a wonderful boss who is letting me adjust my hours to whatever I can manage. I don't know WHAT I would do if I wasn't able to work at all. What would I live on? As it is, the reduced hours are making it virtually impossible to pay rent and utilities! So, I've applied for Social Security Disability.

It takes months for them to process this request. I just got two HUGE forms in the mail that I have to fill out this weekend. One is my job history (since birth I think!) The other is pages and pages to fill out of everything that is "wrong" with me. Such Fun! The biggest problem, of course, is how to predict how I will be feeling from day to day, let alone in the future.

I'd much rather be blogging!

Friday, October 5, 2007

Fridays are the best

With no chemo yesterday I'm feeling great! It makes it hard to believe I really have cancer at all - let alone a cancer with an incredibly short prognosis!

I can empathize with all the young people with cancer who think "I'm just too healthy to have cancer!" Me too!

I wish some other people would come upon this blog and send a note. Its no fun feeling you're the "only" one out there. I KNOW that others have undiagnosed primaries too.

I'm doing a lot of thinking about the CT scan I will be having next Tuesday. It will be such an important milestone. IS this chemo thing working? Am I getting better, worse or staying the same? What do I do in any case? It's unbelievable how lonely this all is.

I didn't work on my Social Security Disability forms today which means I'll have to do them this weekend. The financial "realities" are almost as gruesome as the cancer. Not having a spouse or savings or other sources of $$$$ I have no idea how I'm supposed to live while I'm busy surviving cancer.

But it is Friday night and I'm going to go watch a movie on tv.

More later...
Patti

Thursday, October 4, 2007

Time Flew!

Wow! I started this blog believing I'd be posting all of the time. After figuring out how to set it all up, time flew! Today is my Thursday "OFF" from Chemo. I am working this afternoon so don't have much time, but realized I'd not posted a note for quite a while.



My sister came to visit last weekend. She's 18 months older than me and thus my "big sis". I'd not seen her for 2-3yrs as she lives in Minnesota and I'm down here in Tucson. It was GREAT having her here! Thanks JB!

I am so used to living by myself that having someone "around" was a bit weird to get used to, but we really had a good time. I seem to be having relatively mild reactions to the chemo so far. Basically my stomach burns when it's either empty, or about 2-3 hrs after I've eaten.

I've been trying to figure out what to eat that may minimize this, and so far am sticking to blander food. I KNOW that anything with tomato sauce, for example, will kill my tummy almost immediately!

My stomach problems put a bit of a crip on our activities, and limited what I could order in a restaurant, but we had fun anyway. The picture of us at lunch is in CARUSO's outdoor garden. The other picture is of Janel on our drive up the mountain near my house. She REALLY helped me re-do and organise my kitchen, for example. Not "fun" but very very appreciated as I've not had the energy to do it and thus haven't been cooking or using it much. Hopefully now that it's layed out better, cleaned up, re-organized and all, it will be easier.

On the really fun side, we went to Sunstone, which is a place here in Tucson that has retreats, workshops, alternative therapies and all sorts of stuff in support of people with cancer. I went to a one day laughter workshop the weekend before last and checked out their campus. Beautiful! With a pool! You can use the pool! IF you are with someone else. Well, most times I don't have anyone else "with" me, so I've not been able to take advantage, but last Saturday, with Janel my sister here, we had the whole thing to ourselves for a couple of hours. GREAT FUN and lovely in the 95degree heat! I am NOT posting the picture Janel took of me in a swimsuit! :-)

We hung out a lot too, had a couple of good talks, and went out to eat a couple of times. All in all it was wonderful to have such a huge supporter right there with me.
Janel has been the best! She's helping with government paperwork baloney - like Social Security, helped me with my kitchen, as I mentioned, been there to talk to me almost daily if I want (and I've wanted!) and just has let me know in a million ways that she loves me and wants me well. I tear up just thinking about her.

Anyway, we're of the type to not "wear our feelings on our sleeves" so it's a little hard to show how I feel to anyone. More about that another time. I'll also have to share the story of the "angel" I met at the Laughter workshop! Come back and visit soon. I'll be posting more now that I've got this running smoothly.

Best Explanation of Unknown Primary I've Found to Date

This came from a website that sells information called "canceranswers.com". They give some information free and then sell a report if you are interested. So far in my research, this description and explanation of cancer of unknown primary (origin) is the simplest and clearest I've found.


CANCER OF UNKNOWN ORIGIN TREATMENT INFORMATION



The simplest living component of the human body are it's individual living cells.
There are many types of cells within the adult body, but they all arose from a single fertilized egg cell implanted in the womb. This cell was "pleuri-potential", meaning it contained all the information necessary to construct a new human body. Astoundingly, every single body cell (except the sperm and egg cells) retains the total amount ("complement") of information to construct a duplicate person! This information is carried by the tiny "genes" in each cell, which are themselves compacted into a substance called "DNA" which forms the 48 chromosomes within every human cell. Normally, much of the genetic information is "masked" within cells as they divide and develop ("differentiate") from previous cells.

Only the information needed to perform their specified function is readily available. This accounts for why cells specialize to become brain, bone, cartilage, muscle and fat cells, for example. Cells themselves are arranged into network structures called "tissues", such as heart tissue, lung tissue, eye tissue and kidney tissue. The blood is a circulating tissue. Furthermore, various tissues can be further combined to form "organs" like the brain, pancreas and larynx (voicebox). Moreover, at a higher level, organs can be integrated into "organ systems" such as the respiratory, digestive, nervous, and reproductive systems. Thus increasing levels of complexity and sophistication are seen as the human develops, but every part of the body can be defined by it's cellular components.

The cells comprising a fledgling human grow very rapidly in the womb, in early childhood, and through puberty. In adulthood, new cells are only formed to replace those which have died from injury, old age or disease. The division of cells to produce new ones is under tight control by the "genes" within each cell. and if they become damaged, the cell may start dividing out of control. Cancer starts in a single cell which has become abnormal. This cells produces millions, and eventually billions, of copies of itself. The copies are called "clones". These clones fail to function as normal esophagus tissue, but instead divert resources from healthy cells to fuel their own growth. When there are about 1 billion cells, they form a clump, or "tumor" 1/2 inch across. A "tumor" merely means a swelling, it can be caused by infection, inflammation, cancer or whatever. If a tumor only grows in it's local area (even very large) but does not have the capacity to spread to distant body areas, it is called "benign" and is not cancer. If, however, the tumor has the ability to spread to distant body areas, it is called "malignant" and this is cancer.
The actual process of spread is called "metastasis", and can occur to any area of the body. It is this ability to spread that makes cancer so dangerous. Patients rarely succumb to the growing tumors themselves. Rather, cancer most commonly kills by causing anemia (lowered red blood cell count), infection (due to a lowered white blood cell count), and bleeding (due to lowered blood platelet count). We also see interference with normal organ functioning, and a general debility arising from malnutrition, dehydration, and multiple metabolic disturbances. While modern medicine can extend the lifespans of most cancer patients by partially correcting these disturbances, only completely eliminating the "malignant clone" of cancerous cells from body will cure the disease. What is Cancer of Unknown Origin?
Every cancer initially arises from somewhere. Usually, the location where the first cells turns malignant ("transforms") to start a cancer is obvious, since an enlarging tumor becomes apparent there . The location where a cancer first starts is called the "primary site". The cancer then spreads into adjacent tissues by "local extension", that is direct growth from the primary site. An example is a bone tumor extending into the muscle and fat surrounding the bone. Next, the cancer commonly spread into the "lymphatic system" which is comprised of a network of tiny "lymph channels" which drain the tissue fluid with bathes body cells with oxygen and nutrients [there is not a blood vessel connecting to every cell; instead the blood fluid ("plasma") seeps out of the smallest blood cells to supply groups of cells and absorb their waste products, and this fluid is collected by the lymphatic system]. The lymph channels carry their fluid to normally pea-sized "lymph nodes", which are packed with white blood cells.

These lymph nodes tend to occur in clusters, called "glands". They purify the plasma, killing bacteria and trapping cancer cells. When they detect something foreign in the plasma, such as a germ, allergen or cancer cell, these lymph glands swell up ("lymphadenopathy"). As an example, there are about 400 lymph nodes in the neck region and people often note swollen "glands" in their neck with a strep throat. Ultimately, the lymph glands interconnect via lymph channels, and all of the lymph fluid eventually drains back (into the "left thoracic duct" nearby the heart) to rejoin the bloodstream. The point of all this is that cancer can spread from the primary site to local lymph glands ("lymphogenous dissemination") causing them to swell, and then to more distant lymph glands. The lymph glands closest to the primary tumor are called "first eschelon" nodes, and more distant ones are called "secondary nodes" and named by their anatomical location.

Cancer can also spread ("metastasize") from the primary site via the bloodstream, since individuals cancer cells can be sucked ("embolized") into local small blood vessels ("capillaries"). This process is called "hematogenous dissemination", and can spread the cancer to ANY living area of the body. This is basically "seeding" of the cancer to fertile areas where "metastatic tumors" (as distinguished from the initial "primary site") can flourish. Certain areas of the body seem more "receptive" to trapping cancer cells from the bloodstream and promoting their growth. These areas are those that have good blood supply and complex loose fibrous networks that trap cells, such as the lungs, liver, bones, brain and skin. In fact, these environments may prove more hospitable for tumor cell growth than the primary site, resulting in a larger "metastatic tumor burden" (bulk) than the size of the initial tumor! Thus, the more obvious appearance of the cancer may well be to the site(s) of spread, rather than the area it started in. All cancers are described by where they putatively started, and the areas that they have spread to ("involved").

However, in a minority of cancer patients (5 to 10%) not only is the site of spread more evident than the "primary site", but the site of origin is not apparent at all! This is called "Cancer of Unknown Primary", (or "Unknown Origin" or "Occult Carcinoma") and represents a serious dilemma for treatment. Sometimes the "primary site" can be intuited with great accuracy. An example is when the lymph nodes in the armpit ("axilla") only are involved with cancer in a woman with high risk for breast cancer-- the likely origin of the cancer is in the breast on that side of the body, even if nothing shows up on physical exam or mammogram of that breast. On the other hand, sometimes the origin may be very perplexing and nearly impossible to discern, such as when a single lump of non-skin cancer arises on the torso, and could have arisen from any number of inapparent areas. Then the cause ("etiology") of cancer is unknown, and may either become apparent over time, be deduced from medical inquiry, or may never be known. As will be seen, many cancers which are originally classified as "Unknown Origin" will ultimately "declare themselves" with careful investigation, but about 20% will remain unsolved.

The origin of a cancer may be inapparent for several reasons. Firstly, a cancer is not generally detectable with any of our radiology procedures until it is at least 1 cm. in diameter (about 1 billion cells), but it may have spread to a more fertile area for growth before getting this large at the "primary site"-- and thus go unnoticed there. Also, the original cancer site may have outstripped it's blood supply, and died, but managed to "seed" the bloodstream before disappearing in it's primary site. Likewise, immune processes (white blood cells) may have successfully detected and destroyed the cancer when it was small at the primary site, but (unfortunately) not before it had managed to metastasize to an area where the immune system is less effective (i.e. brain or bone). Another possibility is that the whole of the primary cancer "shed" away into the lymph system and bloodstream, simply leaving no remaining cancer cells in it's orginal area. Sometimes the original site of the cancer simply dies ("apoptosis") from genetic instability or other unknown reasons. Finally, there may be tissues in the body in the wrong places (called "ectopic tissues") which resemble normal tissue counterparts, but become cancerous. Thus, tissue resembling the thyroid may be found in the ovary, or resembling bone may be found in the lung. If these abnormal areas become cancerous (as they are prone to do) then we may fruitlessly search the normal area of that tissue (i.e. thyroid or bone) for the primary site-- but there is none to be found. Thus, we can understand why a Cancer of Unknown Primary may or may not eventually have it's area of origin discovered, and also that if we successfully treat the area(s) of metastasis, we may in fact have no cancer cells remaining in the body.

The origin of most cancers is obvious, either by looking at which organ the original tumor started in or at a sample of the cancer cells under a microscope. Rarely however a cancer will be found in skin, muscle, fat, glands, bone or brain and it is apparent that the cancer started elsewhere. This is because the cancer cells found at the site of spread are different types of cells than would normally be found in that area. Even after medical workup, the site of the original, or "primary" cancer, cannot be determined. This is a Cancer of Unknown Origin, also called "Occult Cancer".

It is critical to get prompt and proper treatment for an Occult Cancer, this can literally make the difference between life and death. Often the "primary" is never found, and so doesn't become a clinical problem. With competent analysis, however, the primary may be found and treated, possibly saving the patient's life.

CancerAnswers' material explains, in plain English, the definition, frequency, symptoms, evaluation, historic and latest effective treatment for a Cancer of Unknown Origin. We tell you everything you must know to help make the right decisions for this cancer problem today.

This is just an excerpt of CancerAnswers's report on Cancer of an Unknown Origin.

Thursday, September 27, 2007

First Entry

I was diagnosed with cancer of "unknown primary" on August 1, 2007. What that means is that although they found 4 masses in my liver, they know it's not liver cancer (liver cancer isn't "primary" - it didn't start there). They haven't been able to find the source, where it started. It has metasticized to my liver from somewhere however!

Because it is unknown, it's very difficult to put a label on me that answers the question, "What kind of cancer do you have?" It also makes it difficult to treat.

I'm off for the second session of my second series of chemotherapy treatments in 1/2 hour, but I wanted to get this blog up and running before I left.

I will be writing about my expeiences and thoughts as we go along. More later...
Patti