The Calm Before the Storm

This has been a pretty quiet week. Just a couple of appointments and some paperwork.

Today I went to have my "dry run" and the radiology center. This is when they make sure all the rays and pointed towards the right places. The techs were very nice and told me I'll get my tattoos next week. Up until a couple of days ago I had no idea that these plastic circles with permanent marker under them were going to turn into tattoos. This is so I can bathe ( good plan) while undergoing radiation and not erase the all important marks. I checked into how they do these tattoos, I had visions of the guys from LA Ink showing up , but that's not the way it's done. Apparently the skin is broken a bit and then some India ink is added and you get a fake wrong colored freckle. All I can relate it to is when I was in 8th grade and I had to get vaccinated and the Dr. scraped my arm and then put the medicine in it and it got a huge scab on it but I didn't feel badly because everyone had one as it was part of the High School physical procedure. Well anyway they tell me they're permanent and hardly noticeable and it's recommended that you don't get them removed just in case you need to be radiated again someday because I guess the can't radiate the same spots twice. Maybe when it's all over I'll have them connected ( connect the dots la la la la ) OK probably not.

So on Tuesday we start the chemo - radiation combo pack, on Tues-Thurs I have chemo and then go straight to radiation, then I have 2 weeks with just radiation, then we do the chemo-radiation thing again. If I said I wasn't a bit nervous about this I'd be lying, but I also have to work hard to keep a positive attitude and think of those radiation beams as life saving beams of light.

Speaking of chemo, they gave me this prescription for pills to take on chemo days to help keep nausea away. So before I start chemo I go and get this 3 pack of pills, one for every day. I have insurance so I've been paying my usual co-pay for these pills and not thinking anything of it. Then the other day just by chance I looked at the paper that came with them from the pharmacy...are you ready? 3 pills= 353.00. What the heck are they made of ,gold? This then freaked me out because I have a 3,000.00 yearly cap on my rx insurance. I have a feeling we'll have blown through that before long. I'm telling you for 115.00 plus a pill they should walk to your house introduce themselves, promise that you will never feel the least bit queasy again in your lifetime and then side down your throat while singing " On Top of Spaghetti". And the drug companies have the nerve to complain..ugh. I live 20 miles from Canada they're probably sold over the counter up there.

Anyway that's been my week so far, I can actually taste food this week so I think I'll go out for a nice dinner, heaven knows once the radiation/chemo thing starts there's no way to tell how things will taste.

Oh yes one more thing, I have to tell you that if you use a thermal mug for anything hot or cold like coffee in the AM or whatever in the PM the best ones I have ever used are made by Contigo. Margie bough me a couple from QVC and I was a total skeptic ( who me?) but I have to say ,you can turn one of these things upside down in your tote bag and it won't spill and it keeps coffee hot almost all day and ice cubes will still be there in the morning ( I use it for my bedside because I wake up with a dry mouth a lot at night). So now I feel like Oprah but I can't afford to send you all one, although I wish I could :)

Just Thinkin'

I don't know about you but I spent my morning half nekkid on some sort of a machine table while a young man drew lines and asterisks all over the top half of my body. No it wasn't me working to cross something off my "bucket list", it was a trip to the radiology office. Apparently this is how they figure out where to shoot the gamma rays or whatever you call them. So my new friend Pete ( you may remember Pete from my previous post about someone who could stand to get a different job)who today was a nice as nice could be, measured, viewed, and marked my body with bright blue marker and some clear sticky dot thingys. I was then told we were done until next week and I should try not to wash all the marks off because they're important. I was also told next week they'll give me marks that will last through all 6 weeks of radiation...fun.

In the past few weeks I've spent a lot of time trying not to move while some test or another was being done. Sometimes I've moved into a machine, sometimes the machine has moved over me, sometimes there was a combination of both but always someone says " try not to move and just breathe normally". During the first couple of tests I remember my mind was racing, I was wondering what was going on, I was praying, I was making a list of things to do, I was trying so hard not to move that I'm sure I was. Now I couldn't tell you what , if anything I'm thinking, I think I sort of found some zen place where I know what's going on ( as much as I need to) but I sort of "zone out" and I'm usually a bit startled when someone says "OK we're done". So maybe having cancer has taught me to meditate in some odd fashion, cool.

Chris and Jenny were here with the baby last night. He is growing so fast! Jenny said her sister says he looks like me, could be, especially now that we're both sporting the bald look. All I know is he's the apple of my eye and I can't wait til he gets old enough so I can tell him some great stories about his Dad .

Well, I think it's nap time, I think I need to stretch out without someone drawing on me or some machine humming for awhile.

What a Day!

This has been one roller coaster of a day! It started with a CT scan this morning and I have to say I finally met the one technician at the Imaging/ Cancer Center who should look for a new line of work and soon. Up until now no matter how uncomfortable the test was the people were great, today this young man turned a simple CT scan into a ride on the anxiety train that lasted for way too long. If he had bothered to read my chart ( that he had in his hands) he would have known that yes I've had 2 rounds of chemo and yes we were doing this scan to see if the tumor has gotten any smaller and therefor easier to shoot full of radiation without harming healthy lung tissue. But he knew none of this and looked extremely skeptical as I told him, he then handed me a towel and pointed to behind the CT machine and said " you can just go back there and take off your shirt and bra and hold this towel over yourself and lay down on the machine. Call me when your ready." By then I was so flabbergasted I did what he said and ended up having to move some medical equipment to make space for my clothes. At any rate I managed to get through the scan but his questioning attitude had me a bit crazy especially on a day when I was waiting for the MRI results.

On my way to the test I dropped my car off at the garage, my AC hasn't worked all summer ( nice when you can't breathe) and I had a tire I thought had a slow leak. I no sooner finished with the CT scan then they called from the garage to tell me that the tire was shot and it would be 137.00 for a new one was that OK ? ( no I wanna ride around on 3 wheels ) They hadn't started on the AC yet.

So off to the oncologist we go, I get my blood drawn and then it's sit in a room til they get around to you. The oncologist himself came in which is unusual, normally I see his PA. He does a brief exam and asks me when I say the radiologist last. I say I haven't seen him but I had a CT scan this AM. He says " well let me see if they've read it yet" and disappears. Meantime after about 10 minutes of waiting I hear him say, " Yes I have Susan Kirkegaard here" and then someone had the nerve to either shut his door or make some noise and I couldn't hear what he was saying....torture I tell ya torture! After another 10 minutes but what seemed like an hour he came back in and said " well, things look very good."

So here's my awesome news! The tumor has shrunken by about 50% and no cancer detected in my brain . So that means no cancer in my lymph nodes, bones or brain, and the chemo is working on the tumor!

The next step is chemo and radiation at the same time. 6 weeks of radiation and 2 more rounds of chemo. I have a feeling this won''t be the best 6 weeks of my life but if it kicks this crap out of me I'll fight my way through it kicking and screaming the whole way!

So, thank you for all of your prayers and positive energy and good thoughts. I truly believe you all are as much a part of this healing as the medicine is.

Oh yeah and another victory today I actually got my usually stoic oncologist to smile !

Lots to Be Thankful For!

I finally got my appetite back! Now this isn't something that I would have rejoiced about several months ago when I was fighting my never ending battle of the bulge but these days after existing on flat ginger ale and saltine crackers ( did you know different brands have different tastes, I thought they were all the same) I am thankful to be able to enjoy "real" food again.

While I'm talking about being thankful I need to thank all of you who have sent gifts, cards, happy thoughts, and encouragement. I think I have thanked all of you personally but if by some chance I missed you, please know it's chemo brain and not that I'm not grateful. In fact in the wee small hours of the morning it's you guys who give me the guts to stay positive and not let this crazy turn of events in my life get me down. Lord knows I've had lots of crazy twists and turns in my life and I somehow always manage to come out on the other side in one piece and I expect that I will this time too. The Kirkegaard/Bevilacqua clan is planning a trip to Disney World in 2012 and I plan on being there to introduce my Grandson to "the mouse".

In unrelated news I think I've found my chemo style, I know this won't surprise many of you but I've decided the scarf or bandanna is the way to go for me. I spied a whole display of bandannas in every color in Walmart for like a buck a piece and I've decided that's my style. I'll hold out on the cranial prosthesis for special occasions and when it's not 90 degrees. My hairdresser really liked the wig and she's decided when my hair grows back we're going to go for that color and hi lights , we'll see, by then I might just be a happy gray haired grandma.

Anyway, I just wanted to send you all an update and thanks and let you know the "food crisis" has passed. I wonder how much you have to eat at the Chinese Buffet before they cut you off? ( Just kidding)

This One Kicked My Butt

Well this last round of chemo was a doozy! I've mostly been sleeping and trying not to feel too sick to my stomach for 3 days now. They gave me pills for the nausea and I guess they sort of work but it's that growling stomach thing that makes me crazy. I know I should just put on my big girl panties and deal with it but I must admit I haven't been exactly in the mood to tough this out. I guess like every side effect I've encountered, once I know how long it's going to last and how bad it can get I'll be OK. Right now though , I'm tired of crackers and tea and ginger ale, this too shall pass.

I did go and get my head shaved this morning, no more clumps of hair all over the place, YAY! I've decided there are good things about having my head shaved like no bad hair days, less things to move on my dresser when I dust ( no hair products), money saved in dye, no using a blow dryer in the summer, no "bed head", and a perfect hair do whenever I want one thanks to my cranial prosthesis. I have to admit every time I go by a mirror I do a double take but I'm sure that'll stop as time goes by.

In the meantime I think it's time to go stretch out again and wait for the "stomach grumblies" to pass.

Round Two Complete!

Yesterday I had an MRI of my brain. I have to say out of all the tests I've had this was the most annoying. First let me say that whoever designed the MRI must be a thin person because these machines are not made for people of girth. At 55 years old I can finally relate to what a sardine must feel like, not that this has been a goal of mine but I experienced it yesterday. OK so add to the feeling of a golf ball being sucked into a garden hose, a lot of noise! They gave me headphones tuned to my favorite radio station, I couldn't hear any of the music over the din of the MRI machine. Then at some point I heard what I thought was a voice saying I have no idea what and then pushed me out of the tube long enough for some faceless person to shoot me full of dye and then they sent me back in for the big finish. I must say the technicians were very nice but the whole experience was not pleasant. Oh did I mention how hot it was in that machine and how there was a brace over my head to hold it still? Anyway it's over and if I have to have it done again I'm going to ask for the plus size machine.

I finished round 2 of my chemo today which means I'm 1/2 way through. In a couple of weeks I'll have a CT scan so we can see if the tumor is shrinking and then we'll talk radiation. While I'm impatient to get things done I also want to come out of this with the best results possible so I'm just going with the flow.

Speaking of flow, I was pulling hair out of the bathroom drain this AM and decided that it's time to get rid of what little hair I have left so Monday I'm going to get my head shaved. I'm OK with this but my mother isn't taking it well, I don't know why except that now when she looks at me it'll remind her I have cancer. So far my hair is really the only indication that I'm not well, I haven't lost any weight ( as the MRI machine could tell you), no dark circles under my eyes. Outside I look pretty darn healthy, it's just inside things are a big nasty mess. I do sleep a lot though, today when I got home I slept from about 1:00 til 6:00, it's about 8:30 now and I'll be out cold by 11 at the latest. It's always that way right after chemo, then in a week or so I'll get some more energy back. It kind of bugs me that I'm home with all this time on my hands and I don't get anything done because I'm just too tired, but I guess that's why I'm home in the first place.

I read this cool quote today which kind of says where I am right now: " She wasn't where she had been. She wasn't where she was going....but she was on her way" from Jodi Hill

Oh I'm on my way alright, back to being a healthy me, it's just gonna take some time.

Once More With Feeling

Today began round two of my chemo. I have to say it was easier to go there now knowing what to expect.

Some other folks must be on the same rotation as I am because we recognized each other from the last time. For the most part the people there are pretty up beat this goes for patients and companions both. There was a new gentle man there today and he had what looked like his son and maybe his daughter with him. They were very serious and I think were kind of off put early in the morning when they heard the laughter coming from my end of the room. After an hour or so they started to relax.

Of course we had the IV pole ballet again but it was only a pas de deux today which made things a bit easier. We also talked about having a Christmas in July day and decorating our poles to look like Christmas trees. One woman was really getting into it figuring out how she could use battery powered lights and how she's stick a star on top. Those who have gone through this before me are right, attitude is everything, I don't care what anyone thinks, I'm going to laugh my way through this as much as I can because it's darn good medicine.

Speaking of IV's, I don't always have "easy access" veins so everyone uses the back of my left hand, it's constantly black and blue now. When I have chemo they put the little "port" thingy in my vein and then leave it there for the 3 days so they don't have to keep finding a new place and sticking me again...good plan, worked like a dream last time. This time the nurse that did it put it too close to my wrist so everytime I go to use my hand it reminds me it's there...annoying for sure. But then I remind myself it's only for 2 1/2 days and so what if my hand hurts a little. Next time will be better . I'll make sure of it :)

In unrelated randon thoughts: I seem to have developed a fondness for ginger ale..only Canada Dry though. Come to think of it my Dad had a fondness for ginger ale but his always had a splash of Seagrams 7 in it.

My grandson the amazing Rex turned over for the first time yesterday his Twitter ( yes, he has a Twitter courtesy of his Dad) said "Yeah, so I rolled over today. I'm kind of a big deal. People know me." Gosh I love my crazy family ! But again ya gotta laugh.

I predict that by this time next week I will have alot in comon with a cue ball, my hair is leaving faster than folks leaving NYC in the summer on a Friday afternoon. I'm thinking this will take at least 10 minutes off my morning prep time because that's all the time I spend on my hair anyway. I think I have the formula down, wash and dry head, go "naked" or put on a scarf, hat or cranial prosthesis ( wig). I could start to like this :)

Tomorrow I go to chemo and then I get to have a brain MRI, I guess they want to know if I have one and if I do why it works the way it does ( OK maybe not the why it works like this part). Actually it's part of the diagnostics, they want to make sure no little cancer cells decided to travel to parts north. Here's hoping they didn't and like my bones all is clear. Can you even imagine how my brain would work if they had to zap some cancer cells? We all know it works a little off center now, I don't think I want to know what a couple of zaps of radiation could do...unless it would help my spelling that woud be great!

Hot Day Activity, Cleaning Out Drawers

Well the extreme heat and humidity has made it necessary for me to stay in my room. Usually I can get out and wander down stairs for a little awhile, grab a soda or snack and come back but today, not so much.

I still don't have AC in my sewing room so I'm pretty much stuck here with the computer, a Law and Order marathon , a jigsaw puzzle ( 1000 pieces, penguins) and drawers I can clean out.

Cleaning out drawers can be interesting, I seem to have a few "junk" drawers up here, so far I've found my AARP card that I didn't know was missing, , a few unmatched earrings...what do you do with earrings you like, but lost the partner to? I seem to hang on to them in hopes the other will materialize someplace, they never do. I suppose I could have another hole punched in one ear so I could wear them or just start a new trend by wearing 2 different earrings. Maybe I'll just put them away in case I find the missing mate.

Then there are all those things that don't really have a "place" , an old cell phone, watches that need batteries, batteries for things other than watches, flashlights that don't take the same size batteries as the ones you have. I have some computer cords I'm afraid to toss because I might need them, even though I have no clue what they go to , and then there's the A/C adapter that I know plugs into something but I don't know what. I know with all my heart the minute I toss one of these things I'll need it.

I did find a couple of cool things though, I found a note my son wrote to the tooth fairy asking for a toy instead of cash because it wasn't always easy for him to get to the store...always thinking that kid! I'll save that and give it to his son someday. I found a little box with my Dad's tuxedo shirt studs in it, do they still use those or is it all buttons now? Dosen't matter they're special to me either way.

So I guess it hasn't been a bad thing to be really stuck in here all day, I found some cool memories and everything else is a least neater then when I started. Maybe I'll find the earring mates or the thing I need the A/C adapter for tomorrow when I tackle the closet.

Bad Hair Day

Yesterday while I was washing my hair I got a handful (of hair that is), my first thought was "damn that's gonna clog the drain" and then I thought " and so it begins". I decided to get it cut short so once it all goes ( if it does) it won't be that freaky and also so I wasn't shedding everywhere ( ick). So I called my hairdresser but she was booked into next week sometime and next week is chemo week for me so I went to the mall.

I was lucky enough to get a very nice young lady who's mother in law had gone through chemo so she understood what I was looking for and did a nice job with my new short "do". For those of you who've known me forever think high school for those who haven't think realy short LOL.

So I've been trying to decide what my chemo style is going to be. Of course I have my cranial prosthesis ( aka wig) but I honestly can't see me wearing that every day, especially in the summer and especially with the warnings I've gotten like don't get too close to a BBQ grill or it'll melt...OY! I'm not really a scarf person, I'd likely hang myself while trying to tie some of those creations. So that leaves au natural or hats. I bought a nice denim "bucket " hat yesterday covers everything, I had a " Life is Good" cap with a daisy on it that I really liked but I seem to have lost it so I guess I'll have to go get another. I could do the bandana thing but I think without hair there's nothing to keep a bandana from sliding off unless I tie it so tight I give myself a headache. You can buy little glue kind of strips to keep things in place, this is just getting too complex for me. I saw in a catalog that they sell "fringe" which is like bangs and hair that will show below a hat or scarf...oh come on! All I could think about then I read that were those dreadlock hats they sell at Halloween.

As I've said before, if a few months without har is part of the price of saving my life I'm all for it, and I guess I'll figure out my chemo style as I go along just as I have with most everything else on this crazy ride.