take A Deep Breath..and Hold It

Keep Calm and Carry On

2011-06-28T21:26:00.000-07:00

It's not often that you receive the opportunity to append your words onto someone else's masterpiece. To be honest... in this moment, I wish I didn't have the opportunity at all, because it means that I'm writing what will inevitably be the final chapter. Nonetheless, I'm writing today to honor my mom, to provide closure, and perhaps inspiration for anyone that could be facing this horrible, horrible disease.

On Monday, June 20th, 2011, my mother, Susan Kirkegaard lost her 14 month battle with cancer.

I remember it as clear as day, I was in the hospital with my wife after the birth of our first child, a son, Rex. Mom had just gotten to the hospital to meet her grandson and said to me (as only my mom could) "Chris, I feel like shit!" A few days later, she was diagnosed with Pneumonia, and after a chest scan, an area of concern was noticed.

It took me awhile to be able to say it. I knew that it was true, but it was tough to wrap my head around. I didn't want to admit it. A few days later, I remember standing in the bathroom, looking in the mirror and making myself say it out loud: "Mom has cancer" - and at that moment, it was real...and I knew we had to rally behind her to fight this.

We had a DBC (Day Before Chemo) Party not too long after - giving her a chance to enjoy life a bit before all of the treatments began. We ate, we laughed, and we enjoyed each other, and for that day we remained (intentionally) blissfully unaware of the journey she was about to embark upon.

The next few months were filled with endless doctor visits, chemo treatments and radiation appointments. She had good days, and not so good days, but she didn't care. Never once was she ready to throw in the towel. She was determined to beat this disease. She suffered the usual cancer patient plights - she lost her hair, she was nauseous, and she was always tired, but she fought. She fought and fought and fought some more. "Losing" was not an option.

Around the holidays, it happened. Mom had completed her treatments and had a scan that came back negative. "No Disease Detected" was the best three word phrase I had ever heard. She beat it. She was clear. and I cried. alot. She got to spend some serious quality time with Rex, and he loved every second of it. Life was back to the way it was supposed to be.

Because she had small cell cancer, it was strongly suggested that she have some mild brain radiation done as a preventative measure, to keep the cancer from trying to move up there. She spent some time on the fence, and finally agreed, saying "well, I'd rather it be preventative, than them having to nuke off half my brain... you know?" - but she was scared nonetheless (and rightfully so).

She survived the dreaded radiation mask, and the short term memory loss to find her self feeling crummy again. I've realized that it's tough when you have cancer, to know why you feel crummy. They're pumping your body full of stuff that is more or less poison, zapping you with microwaves, and poking and prodding you at every chance they get.. all of which are reason enough for you to feel crummy, but the combo of all of them together - oof.

A couple of months ago, Mom began having trouble walking - which the doctors attributed to after effects of the brain radiation. The condition worsened, to the point where we had to move her bedroom down to the first level of the house, and even moving from one room to another was a challenge for her.

She eventually had another scan, and my worst nightmare had come true. It was back. Mom had several tumors that were pushing on her spine and making it impossible for her to walk. I was mad at everything. I was sad. I was depressed. I shut down. why her? why should she have to fight this again? Her response? "Here we go again. Cancer, you picked the wrong bitch!" unbelievable....somehow, she was ready to go, again.

Her condition eventually lead to a 5 week hospital stay where she was attempting rehab to learn to walk again.. but she just couldn't quite gain feeling back in her legs enough to do it. We visited as often as we could. We should have visited more. Seeing her like that was tough. I was so mad that she had to go through this. Every car trip home after visiting I fought back the tears. I wanted to help her in some way, but there was nothing I could do.

She was eventually discharged to go home, and moved into a hospital bed in the dining room. The house was filled to the brim with medical equipment. The same room that we had held her "Day Before Chemo" party in, had now become a startling visual reminder of mom's condition. She was struggling, and I could tell... she just wasn't quite "herself" anymore, mentally. She was always tired and she was confused a lot. I thought maybe it was the medication - but looking back, I think maybe it was an indication of how she was doing overall.

My Grandma and I have both always had a "gift" of having absurdly keen instincts and just always knowing when something was "going on". On Wednesday, June 15th I was doing some touchup painting on my deck outside and I started to feel ill. I felt weird. I felt strange. Something wasn't right. I went inside to get a drink and I realized I had 8 missed calls from my Grandma. Mom was back in the hospital, and it was serious. I immediately headed north to Watertown to see her.

The latest round of chemo had taken it's toll on her body. It destroyed all of her platelets and white blood cells, leaving her body extremely weak, prone to bleeding, and very susceptible to infection. I spent the next 5 days in and around Watertown, balancing being with Mom and being with my Grandma. We knew it was serious, and that this would be an extremely difficult battle. She got transfusion after transfusion, IV after IV, and probably 10 gallons of antibiotics. Her condition was stagnant, some levels were increasing, some were not. She had lost her appetite, and spent a large majority of the days sleeping. I was scared out of my mind. We spent Sunday (Father's Day) together, and I brought Rex up to see her. He's just getting a handle on talking, but he managed to sputter out "GEEEEE! SUE!!!" (G for Grandma) she smiled in her sleep and said "I love Rex!"

That night, things changed. She began refusing her medications and becoming difficult for the nurses. Not too long after I arrived Monday morning, she had a very lucid moment... the kind of clarity I hadn't seen in her in months. She asked for our permission to go. She told us couldn't fight anymore, she was exhausted from suffering for so long, and she said it was her time to go.

I was heartbroken and devastated, but I completely understood. I told her I loved her and that if it was her time, she should go. She was worried about letting us down, but we gave her permission - we ensured her we'd watch out for each other, and that we'd always remember her. We exchanged I love you's. She was at peace with the words she was speaking and hearing. She also asked to go home, which she was granted late in the afternoon, and she peacefully passed at home that evening.

---------

It's been a little over a week since she left us, and it's still not quite real yet. I suspect it may never be. But, it takes an exceptionally strong person to fight for so long, sacrificing everything she knows, just to keep fighting... and an even stronger person to know when to say "when". I think I'm able to write this today because I know she was peace with everything... and also that I got the chance to say goodbye, and tell her everything I wanted her to know. If I've learned anything from all of this, it's that life is so very, very short - never take even a moment for granted.

Mom's journey provided us with the opportunity to meet so many wonderful people that helped her every second of every day of the way. Without all of you, her fight would have been so very different - she constantly ranted and raved about how nice the hospital staff were, and how they were all looking out for her. Her long time companion/boyfriend/best friend in the world, Larry, literally spent just about every minute minute of every day of the last 6 months with her - something I'll never be able to thank him enough for. My wife, Jenny, has been my rock. Mom loved her like her own daughter. They always connected on a level I could never quite understand, but definitely appreciated. Grandma focused on driving Mom just enough crazy to keep her ready to fight this wretched disease.

And Rex.. well, he was probably the biggest inspiration of all, and he unknowingly granted her last wish - to hear him say her name. Knowing Mom, it was so she could know that he knew who she was - but trust me when I tell you that I'll never let him never forget her...... and how could he? Despite fighting for her life since he was born, she managed to fill our house with some of the most amazing hand-made blankets, toys and clothes for him that anyone has ever seen. The power of a Grandma knows no bounds.

I will end this post here with a phrase that became Mom's motto as she fought through each and every stage of this disease - and I promise, Mom, that we always will love you and remember you - and that we will always "Keep Calm, and Carry On"

Wild Wheelchair Ride

2011-06-08T14:03:00.000-07:00

I've been home a week now from the hospital. Thjs weekend some lovely men from my chruch came over and built a beautiful ramp for me so Ican get in and out of my house for treatmemt, I'ts been killer hot here so it was even
more difficult for them, thanks Harry and Richard.
This weekend was General Brown weekend which is a weekend fair to clebrate General Brown, games,rides,funnle cake,,,,yummy. And since I had a ramp I could actually go out side and enjoy the sun and
breeze, The kids came up for a visist too so all in all a great day.y
Monday was my fifst day of chemo again, because of being in the wheel chair I have to have transport come and get me every day (dont ask the price of that), Anyway the driver was a new one and ended up dumping me into the dirt in my back yard, So,we had to call the ambulance to come and get me into the house. I thought I was OK but the visiting nurse just happenened to stop by, saw my twice swollen foot,called my Dr and off on the ambulance I went, At first they/d thought i'd broken it but after x=rays and a 7 am dr visit they decided not and sent me on to hemo, Idon't know how I get so darn lucky / well at least it wasn't broken. I really dislike this lap top so please the really poor typing, hope you all have a great cooler weekend.

Home Sweet Home

2011-05-28T17:47:00.000-07:00

So they sent me home on Thursay with a hospital bed,wheel chair and lift. We're still working on using the lift to get me from chair to bed and visa versa but we''ll get there. This week they'll be building a ramp so I can get in and out of the house. It is good to be home although I must say I do miss the awesome people at the hospital. Every single one of them was truly kind,understanding and patient.

When I left the hospital on Thursday all I had was my cell phone so I could call the rental place to drop off the bed and wheel chair, Larry had everything else ( a month's worth of stuff) in the van. So, I get home, they get me in the house, Larry unolads the van stuff and then he had to leave for awhile. Well after about an hour my phone starts to ring but I can't find it. I knew it was all I had when I came into the house but I couldn't find it. I dumped my purse out, went through the bags from the hospital room,,,,nothing. Finally Larry got here and called my # and when he did my shirt lit up! I had put it in my bra so I could hold onto the wheelchair arms and forgtten all about it. Glad my phone lights up or I'd have been crazy by last night!

So here I am still not walking but I have faith that things will get better over the next months, especially with all of your hope and prayers. Glad to be home!!

Ok So I'm Bored

2011-05-07T09:13:00.000-07:00

They wake you up really early here in physical therapy land Everyday they come in at 7:00 for the bed bath and meds adn then they're gone until therapy time. That's when I work hard trying to figure out how to get in and out of a wheelchair , not easy when your legs are basically made out of jello. So anyway by then I've had lunch. So now what? usally I do some paperwork ,(still have to pay the bills) , maybe read a book,maybe a little cat nap. But I feel like I should be doing something. I can't crochet because my hands shake from one of the drugs, word puzzles are starting to make me crazy, I wish I had Chris old GameBoy, I remember playing tetrus and Dr. MArio for hours, it's not the same on the laptop. It's funny because how many of us wish we could have nothing to do for least a day or two, I know I did. Now it's here and trust me, after a day or two...boring. Guys, be grateful you have things to so because after awhile nothing to do is a huge drag.Thank goodness I have the computer or I'd totally be batshit crazy, at least this way I can keep in touch with the world and you folks and not go too crazy. Anyway, have a nice Saturday, relax and don't over do it :)

Happy May!

2011-05-05T08:38:00.000-07:00

So it's Cinco de Mayo, given the choice, I'd rather be sitting someplace having a

corona and lime and some gooey cheesey warm dip, but alas Samaritan Health center is where I am. Not that this is a bad thing all things considered, I'm now in the Physical Therapy unit. I'll probably be here a month or so but I'm ok with that,I have to do what I need to so this is it. Yesterday was a big day because I got into a wheelchair. After a week in bed it was awesome to just sit up and cruise the hall. I think I've finally gotten over my little pity parade from last week and I'm ready to get this therapy moving. Have I mentioned how great the people who work here are? From radiation to the nurses and aids all of who have been nothing but kind and understanding and willing to take the time to have a chat or give me a kick in the butt when I need it. Well I just wanted to pop in and le you know what's up i have stories to tell but I HATE the latop to type on so it''ll hav to wait til I get home :)

I'm Still Here

2011-05-01T13:41:00.000-07:00

So here I still am and probably will be for several weeks while I get physical therapy so I can hopefully walk again as the inflamation along my spine calms down. While i've been here my room has been across from the nurses station. Great access to nurses but NOISY. Apparently, they have several sr. citizens who tend to wander away so they have alarms on them, most of them are loud, my least favorite is the one that goes weeyou, weeyou,weeyou...this person needs to go home soon or stay put. The staff here is a great mix of folks, I even have one RN from Jersey who actually brought me a Taylor Ham sandwich today. For those of you not from Metro NY/NY taylor ham is really good and you can't get it up here. She had just happenened to have made a "jersey run" and she shared with me! Also this is a teaching hospital and especially on the weekend the place is overrun by students. I bet I had my blood pressure taken manually and by machine at least 10 times. Not to mention, temperature, pulse taken and heart listenened to and some neuro tests as well. I don't know how the students are doing but I'm exhausted. Tomorrow, if all goes as I pray it will they'll move me to the therapy unit where I'll have therapy 3 hrs a day to get me moving, we still have no way of knowing how much or how long it will take but I'm ready to get going. So keep good thoughts about my getting the therapy I need because we're still a bit iffy about them letting me go. I'll keep you posted. Happy May 1, wow time flies, it was May when they diagnosed me last year, amazing.

Hospital? You're Kidding!

2011-04-28T12:27:00.000-07:00

Nope no kidding kids I'm in the hospital, have been since Monday. I was trying to leave the house to get to radiation and took a nasty fall. I got my first ambulance ride! If you've been following the blog you know my legs were getting worse as a result of the radiation ( seems they never know if you'll go from bad to worse to good again or in what order.) So, right now my legs from the knees down are basically just there for looks because it's like trying to stand on a vat of marshmellows ya just sort of sink. So,in a effort to try and help me walk again I'll be here doing rehab. I haven't been in the hospital since Chris was born, things have changed. Well you still have to pay by the day for TV but you get more channels. Food is ineresting, you get this menu and you call them up and telll them what you want and they deliver it. Not too awful either. I'm not sure when they decided to hire the youngest and skinniest young ladies to work here but sometimes I feel like I'm treated by the Justin Bieber fan club. They are a great bunch of people but I have to say they make me feel OLD. It's not clear why I'm having the trouble I'm having, I think it's sort of tumor pressure on my spine, some lumbar problems and a list of other things that made my eyes glaze over and stop lstening ( i know not clever). I just want rebhab to kick my butt so I can get going again ( btw yes they still make bed pans although plastic now)) ( i know TMI). Also,nurses don't wear white anymore, it seems ( i think a very bright srubs company has taken over the "cheery medicalwear" market up here, every day it's like Carnivale in the halls.......someone needs to address the color combinations though. It's like being in that parrot house in Disney world. Nevertheless, bright or dull colors the staff are all awesome folks who sincerely care. (nope not pain meds talking but they're awesome.) just some shout outs to good people. Anyway I will keep you up to date best I can, you can also talk to Mom (*disclaimer: she may not understand the whole story so it mght be confusing, then try Chris or just ask me. ) Right now I could use some, prayer, positive thought power to get me to the right rehab facility, the insurance co is being a pain..so any help is appreciated.So I kicked cancer once lets get get me some feet so I can do it again!

Easter, Passover, Spring, Healing

2011-04-22T10:33:00.000-07:00

So I have completed a week of radiation to my spine. No changes yet but no more deterioration either so we're holding steady. Basically I can just get around the house with the walker ( slowly) and then take what's in my mind the death defying trip to the car so I can get to the hospital every day. Needless to say I'm frustrated and scared ( what if it dosen't work?) but i need to just keep going and having faith that all will be well and I'll be back on my feet soon. They've also given me steroids that make me cry for no apparent reason...good release but annoying too.
Also this week, Rex caught chicken pox and it was recomended that we not be together because I could get shingles because of my lowered immune system....so no family Easter celebration for awhile.
Anyway that's the latest update, now i get a couple of days off adn go back to radiation on Monday.
I wish you all a Happy Easter, Happy Passover, joyous spring and ask that you keep me in your thoughts so I can do the happy dance that i've beaten this crazy thing once more with feeling.

Joy to All
Sue

Round 2 in the Cancer Fight Begins

2011-04-16T08:44:00.000-07:00

So those of you who follow my ramblings ( thank you) will have noticed that I've had trouble with my legs lately so I had some tests done to see what was going on and the answer I got wasn't a great one. OK well the good news there is no cancer in my brain, the not so good news is there is a spot near my spine which is what thas been causing my walking problems.

I found this out wheen my oncologist's office called at 9 am yesterday morning and gave me the news. Karen the PA seemed concerned but also very positive about this being something that we can get rid of and get me walking again. I frankly was just relieved to find out what was going on. She told me that I would need radiation again and that the radiation oncologist would meet me at his office at 10am even though it was his day off. So off I went to see Dr. Deblasio and my buddies at the cancer center. He told me pretty much the same thing Karen had and told me I have to take prednisone for the swelling and I'll be having radiation evey day for at leaast 3 weeks and we were starting it right then and he wanted me to come in today even though they usually dont't do treatments on Saturday. This time I get to lay on my stomach, this is a new experience,to have my butt radiated :).I have to comment on these folks at the center they are always helpful never condescending and with a sense of humor too.

So the other problem that needed to be resolved is that I can't climb stairs right now. Those of you who've been here know all the bedrooms are on the second floor and there is very little privacy. But we do have a back porch/ mudd room kind of thing at the back of the house which is now my world. Chris came up yesterday and he and Larry made me a nice little world. Only thng is all my sewing things are upstairs all my eBay stuff is upstairs etc so it's goin to be interesting. Right now I'm looking for a room divider screen so folks coming in the back door don't catch me taking a nap or just getting up( even though radiation is every morning). So if anyone out there knows of one I can borrow or buy let me know, apparently there isn't one to be purchased up here.

And so we begin round 2 in my fight with this disease, I'm ready, here we go again, I won before and I will win again. the PET scan for my adrenal gland will be delayed a month or more while we deal with this .

This may sounds strange but I'm grateful that I've been going to the oncologist and they ordered this test. If I had just been going to my regular Dr. he probably would have sent me to a neurologist or orthopedist and the last thing they would have thought of would be cancer which means it could have been weeks before this was identified. So even thoug it's not good news it is timely and it gives me a better chance of beating this too.

So off I go to but on my cancer fighting uniform and I will keep you all informed. All good thoughts are greatly appreciated and in my opinion have brought me miracles in the past.

It was almost this time of year i was diagnosed the first timee....maybe spring and I don't like each other.

MRI and Frank

2011-04-14T12:51:00.000-07:00

So yesterday I had my brain and spine MRIs, it took about an hour and a half of being in this long tube and listeningto it bump and twirl. The only good thing was they have head phones and the person in charge didn't even ask he just put on some Sinatra ( guess I looked an OK age for it). It actually made the 1 1/2 hours bearable.

I'm still not moving well, having more and more trouble getting up the stairs and being more and more afraid of going anywhere without the walker. It's depressing being my age and needing a walker but I keep telling my self that this too will pass and I'll feel my legs again soon. I mean I beat cancer I have to beat this. Only thing is cancer didn't make me fall down alot . The common thing but I'm sure not remotely related is the nausea and intestinal issues. When you can"t move very fast these are no fun, at least with chemo I could run if I had to.

I'm not supposed to get the results for another week and a half but I called today to see if that could happen faster, I think the sooner I find out what the heck is going on the sooner I fix it. Haven't heard from them yet.

I've been doing some office work from home, I'm glad to have something to do and so grateful that they will let me. It's no fun though having no one to interact with, but it's better than just doing nothing. At least sitting at the computer is pretty safe, I can't fall down .

So that's what this week brings, still scared, annoyed and frustrated with this latest ailment but I'm still pushing along as best I can. Next week I get a PET scan of my adrenal glands, I don't think the PET machine has headphones, darn I would have asked for James Taylor.

Step by Step

2011-04-06T11:38:00.000-07:00

So the awesome news is theres NO LUNG CANCER detected YAY. Then there the other things. It seems I have a spot on one of my adrenal glands, they don't seem concerned but I'm having another PET scan anyway.

I know I've mentioned I've been having trouble with my legs, they turn to rubber and then I'm off balance. My knees are not happy campers so I have to sit on things that are pretty high ( you'll recall the toilet seat). Anyway they think my brain may be swollen as a result of the radiation and that might be cauing the leg problems. So I get to have an MRI ( uch) of my brain and one of my lower back to see what's happening. It's a creepy feling when your legs turn into jelly under you. I've been using a cane and I'll keep doing that so I don't end up on my butt.

Pasta for CASA was yesterday, I think it was a great success, I haven't heard the #'s yet but I think we did very well. On that subject I don't know what I would have done without all the great people who jumped in to help not ony on the day of but in these weeks before when I've been laid up. Actually I think they did a much better job than I could have this year because I've been so health preoccupied.

One of the results of al the health issues and the stress of the the past months is now I cry at the drop of a hat . Those of you who've known me forever know this is not my way, I'm not a weeper. Well apparently something chemical or emothional has turned me into a waterworks girl ( I HATE THIS). It's just so not my way and then I feel sooooo stupid. Hopefully this too will pass as the radiation works it's way out of my system.

Anyway let's concerntrate on the good news because no lung cancer found is awesome and the other problems wil be dealth with in time and fogotten, or I'll be designing an awesome line of canes!

What a week ! So Tomorrow Results

2011-04-03T12:05:00.000-07:00

So my week started last week with my 3 month CT scan ( nerves galore), I 'll get the results tomorrow. Any of you with higher connections are asked to put in a few good words with the higher powers and lets have "no evidence of disease" again!

So what's with the knee brace Sue? Well lately I've been having problems with my knees and legs sort of feeling like jelly. Only the last week or so but it's no fun. I'm told it coud be stress or some side effect of the radiation finally workig it's way out of my body. Either way ; and I haven't checked with the Dr yet because frankly I'm sick of being sick in one way or another ( I also had a Upper GI this week cause they think I might have an ulcer) ( I'm thinking stress). So anyway I fell in the bathtub and messed up my knee ( on top of the weak knee thing) So I haven't exactly been moving well this week. ( close your eyes if you don't want to read this part) but my main problem was getting up and down to the toilet. The handicapp stall at work just has a rail to hold on to but it isn't any higher than normal. Trust me when your knees don't work anything low to the floor is horror! So I ended up buying a seat raiser and I take it with me when I need to go ( what fun!) Thank goodness we have hight profile toilets in my house!

Also on Tuesday is my big fund raiser for the year and I've missed so much work with bad, stomach, knees etc I feel totally behind even though I know the folks in my office have more than covered my absence. I feel awful though because I feel like I'm being a slacker. Then my boss told me last week, Sue it's not you keeping you home it's the effects of the cancer treatment. That made me fee a bit better. She can be wise.

I also have to remember that regardless of what they say tomorrow I'm going to walk out of that Dr.s office with the future ahead of me and fight ( if I need it) ready to go.

I've been engaging in alot of self pity lately, I don't know why and I hate it. At one time in my life when I was feeling "pitiful" I thought about selling Pity Parade Kits complete with black confetti, a CD of funeral dirges and some folks who'd walk with you and say "there, there" then I thouhgt I'd do beter with the Butt Kicker Parade with baloons, happy music and some folks saying " get it together and stop feeling sorry for yourself." If I'd had one of those kits I could have used this week for sure.

Holding My Breath

2011-03-27T11:59:00.001-07:00

So tomorrow I go for my 3 month scan to make sure Mr. Cancer is still gone. I've been very nervous about this for awhile now, in the cancer world we call it "scanziety". To top it off after the scan I have to wait a week to see the Dr. and get the results...boys and girls can we say torture?

I've been sick this week with some kind of stomach thing and dehydration. The doc seems to think I may have an ulcer, so guess what? On Thursday I get to have another test, an Upper Gi. That's where you drink the icky stuff and they take pictures. I think eventually there will be more pics of my insides than my outsides. At least I talked him out of a barium enema..which if you haven't experienced one, my advice to you is ask for an alternative.

Hopefully this week ( tests excluded) I can get back to work and get ready for Pasta for CASA our big fundraiser. I hear the folks at the office have been working hard on the arrangements while I've been doing paperwork from home. Great helpful folks I work with.

This week Rex turns 1, Chris says he's walking and they've cleared off everything 3 shelves up.

I haven't been able to get to see him since I've been sick and I miss him like crazy.

So friends tomorrow is the day, I'm asking for all good karma, thoughts, prayers, health dances and anything else you can come up with that the scan is clear and I can say 3 months clean!

I'll let you all know as soon as I do.

Happy Spring, Sue

Ahhhhh Spring

2011-03-18T09:03:00.000-07:00

That's Emmy enjoying the sunshine after so much snow and gloom all winter.
I have been enjoying it as well and thinking back to last year at this time when we were waiting for Rex to arrive, oh my what a year it has been.
First Rex and then that nasty "C" word that scared all of us and I'm sure took a bit of the joy of having a new baby away from us too.It has been an interesting year, I've learned alot about me and how strong I can be when I need to be, and how sometimes not taking things too seriously is the best therapy. I actually made peace with my ex-husband this year. I felt that Rex should have a whole family no matter where we are or where out lives have taken us. So peace it is and I have to say it was a great weight taken away from me too. So anyone out there carrying a grudge please know it just gets heavier and weighs on your soul the longer you carry it. Wow Sue is getting philosophical...well there is that Kirkegaard connection.
In another 2 weeks I go for my 3 month sacn, no lie guys this has me nervous. I pray every day that they won't find anything and I won't have to go through all of this all over again. Not that it hasn't been fun ( not) but I'd rather find a different way to have fun this summer since I actually don't remember a whole lot about last summer except Dr. visits oh yeah and my favorite soft ice cream place is open in the summer, I remember that :) I'd really like to spend the summer growing my hair back and doing some fixing up around the house that hopefully I'll have the energy for by then. They tell me in a few weeks I sould start getting my energy back after the last round of radiation...OOK I'm ready!
On a lighter note, my Mom had her 85th birthday party as despite her reluctance to have a good time she did and was very happy and surprised to see how many people came and how many others sent regards. She even had a woman that she taught school with in Staten Island over 35 years ago drive up from central New York, that was very special. Of course Rexton got his share of attention and was a very good boy for the whole afternoon. The food was excellent and I really wish we hadn't had so much cake left over because I greatly enjoyed it for a week! Oh the calories!
Well the sun is shining and I don't want to waste any of that nice Vitamin D sos I''be on my way. I'll keep you all posted on y spring fever and the scan too.

Wow it's Been Busy

2011-03-04T09:29:00.000-08:00

Hello all , just thouthg I'd start out with a recent pic of Rex, I took it on Tuesady when Larry and I went down to visit for the afternoon. I've finally arranged my work schedule so I can go down to Syr for a visit once a week and give Jenny a break on the day Chris works late teaching a class. All I can say is it's the best medicine in the world, for me...I'm not sure how everyone else feels but I know when I get there and hug that baby I don't much care about the rest of the world while I'm with him.

Speaking of medicine, I saw my rediologist this week and he said my chest sounds clear as a bell to him and he dosen't need to se me for 6 months! I have a CT scan later this month (scary waiting for results) so I'm keeping good thoughts it will be clear. Also this week I went to the Dr. with a sore throat only to find out I have thrush ( ugh) apparetly those of us with little or no immune systems are prone to this. I can live with this but it's very contagious so, I'm out of work for a couple of days again. So frustrating! Luckily I started the antibiotics ( OMG the mouth rinse is NASTY) soon enough that I won't be contagious for my Mom's 85th birthday party tomorrow. We're having an open house at the church from 2-5 to celebrate, she says we shouldn't have done it but I think she's secretly pleased. More on that on the next blog.

I have a NEW bathtub, I had almost forgotten the absolute pleasure I take in soaking in a nice hot bath with a good book! Bathfitters came at 8:30am and werer gone by 3:00pm. It' s so nice and new and shiny LOL, wow you know you're gettong old when you get this excited over a bathtub..sad.

I've been restless and sort of out of the loop lately. The Dr. says I may have a touch of PTSD, once all the excitement of treatments every day and DR. visits every other week is over there is a huge let down that is followed by " Holy Shit I had Cancer! I hope to hell it's gone" I've been tired alot but I know that's the end of the radiation ( they say another month) but I'm also tired of bandanas, I want my hair back! I'm tired of being scared everytime I cough or feel a pain. I know this will pass eventually but from the folks I've spoken to it's always with you at some level...ick. I think I need spring and new growth and flowers and robins and open windows , soon, I hope, soon.

Oh well so I suceeded in my new tub mission, and tomorrow will be Margie's party, then I have a big fundraiser for work and then maybe, I can take a deep breath and let it out slowly.

Happy Birthday to Mrs. K's Baby Boy

2011-02-18T11:32:00.000-08:00

If you'd have asked me last May about Chris' birthday my first thought would have been " I hope I'm here to wish him Happy Birthday" YAY I am ! and I intend to be here for many more good Lord willing. As you can see Chris has his mother's odd sense of humor, most kids put party blowers in their mouths...not my boy! So Happy Birthday Chris ( 29th) I love ya kid.

It's been an odd couple of weeks, things seem to be just not quite right, I'm forgetting things, crying at the drop of a hat, misplacing things that I always put in the same spot. They tell me these are some after afffects of the radiation...yay. Then just when I think I don't need to think about Drs for awhile I get the calls for the check-ups and the 3 month CAT scan and the reality just slaps me upside the head. Like having to wear a head scarf every day to cover up my coming/going hair ( mostly gone) isn't enough. When I'm done with all these bandanas I think I'll make a quilt out of them, Lord knows I have one in every color and design.

The tub situation will be resolved when Bathfitters gets here in the next couple of weeks and makes my tub and walls beautiful and working. I must say the gentle man they sent was very, very nice and understood some of my craziness having lost his wife to cancer. He said he was going to read my blog so if he does " thanks Sean you were a big help, stop in and see how good it looks when you're all done".

I made it through a super crazy week at work, ( 2 grants, 1 year end report, new volunteer training) and now I'm ready to start my new hours, same amount of time just different times so I can go see Rex once a week or so and give Jenny a break on Chris' long days. I'm looking forward to getting to know my grandson better . Oh and did I mention he's walking now! ( That was something else I was hoping to live to see last May YAY for me again)

Anyway amazing as it is I actually have my window open ( it's 50 degrees) Emmy my cat is reveling in the fresh air and so am I. It's supposed to snow tomorrow but today is awesome...as is everyday for one reason or another :)

Have a great week.. we'll have a bathtub countd0wn soon!

Rub A Dub Dub

2011-02-04T13:32:00.000-08:00

Well my bath tub has had it. It's been on it's way out for years ( because the previous owners didn't properly install it) but my wonderful plumber has been babying it along because he knew we didn't really have the funds to replace it. This morning when I found the flood in the kitchen that came from the ceiling, and knowing that that's where the tub is because my plumber has a trap door in the kitchen ceiling to get the the bathroom plumbing ( gotta love old houses).

Anyway I takled to him this AM and he said " I have to tell you I don't think I can patch anything else" I said I understood and then asked what it would cost for a new tub, he gave me what I thought was a reasonable price that also happened to be the amount of money I'll be getting in a few days from my wonderful Aflac Policy ( no I don't work for them but without them I never would have been able to take the summer off to rest and heal) Anyway I was going to use that money for what I thought was a much needed trip to Florida for a few days. I was upset at first and then I thought what a blessing that I actually do have the money to fix the tub problem and that will certainly give me more long lasting pleasure ( I love a nice hot bath) than 4 or 5 days in Florida. Also it will increase the value of the house, no trip to Fla. ever did that. :)

It's funny when you go through major life changes ( like having cancer) how your outlook on things can change.

In a couple of weeks I'm going to change my work hours so I'll have the time to go visit Rex and Jenny while Chris works a late night teaching. This way I can go spend a day with my grandson and give his Mom a little break ( sounds like a win-win to me).I'm going to have to work extra time the other four days but it's worth it. I want to make sure he knows his grandma and with them living an hour away it can be a month or two in between visits, I grew up with my Grandma next door as did Chris and I hate being even an hour away and not being able to help so, this will make up for a little bit anyway.

I saw my oncologist this week, all blood work is good , everything seems OK. I have to have a CAT Scan in 2 month ( scanziety again) but nothing I can do about that now except enjoy 2 Dr. free months ( at least this Dr.) My ear infection is healing, I had my ears flushed this week ..eeeewwww that's a weird feeling.

Anyway that's about it for now, I'll keep you posted on the tub drama :)

The Ears Have It

2011-01-27T12:53:00.000-08:00

For the past few days I have been going crazy because of a nast itch in both ears. I spent so much time trying to make it stop I was sure I might blow an ear drum in the process. TOday I went to my GP and he checked it out and said I have an ear infection in one ear and the other is messed up becaue of radiation. Apparently brain radiation can turn any ear wax (ick) one might have into cement, so lucky me I have an infection in one ear and a building project in the other. He gave me antibiotics and ear drops and hopefully this will clear it all up.

We all know I got my good news in December but I guess they finally got around to sending the results to my GP. He opend the file started reading the results and then said " you're a miracle, that tumor was huge" I said but Doc I told you this in Dec." he says " I know but when you see it in in writing it makes it so much more real...good for you!) He actually hugged me...sooo not like my Dr. I have been going to the Dr. for over 20 years and he's always had the same nurse, you know the one who knows your voice when you call for an appointment. Well, today was the last time I'll see Mary because she's retiring as of tomorrw. When I think about her giving Chris McDonalds fries coupons when he was there for something and then giving him his weekly allergy shots, I realize what a big part of my familys' life she was. I hope she has a grand retirement but I'm going to miss her.

I got to reunite with some old friends today when I went to the local radio station to plug a CASA training that's coming up. I must say I got a grand welcome and I was very happy to see them as well. For some reason from the first time I went there we hit it off and they are always kind enough to let me come and steal some of their airtime to promote CASA. That's one of my favorite parts of being back to work, I can go see my friends at the station. :)

So for any of you who missed it, I'm done with radiation, they tell me the side effects will worsen a bit over the next two weeks ( more cement and less hair?) and then everything should calm down in a couple of months. I have to say when I was laying on that table every day I wasn't thinking about how strong this stuff is. I must say it'sd going to be nice to get home earlier though, I have things I need to list on ebay and sew for my grandson! :)

Well I feel a nap coming on, have a great week and you guys in the city should come up here we hardly have any snow.

Hair We Go Again

2011-01-19T13:00:00.000-08:00

Well my hair is falling out again. They told me this would happen but I was hoping they were wrong, guess not. The thing that had me puzzled for a few days was why I was so upset about it . The last time it fell out during chemo this summer I basically shrugged and went about my business. This time it has me a bit crazy. Then last night I figured it out, the first time it fell out I was dealing with just finding out I had cancer, chemo therapy, and radiation this time I'm dealing with some light weight radiation ( still kicks my butt and makes me want to sleep) and that's all. This time my hair falling out is a big deal because it can be. Also it was growing in a really funky kind of way that I was getting to like alot.

I don't know if I'll be totally bald, I wasn't after chemo, I had some peach fuzz left. I hope I do now too because I think I look better with fuzzy than shiny.

I know some of you are thinking "but Sue you have your cranial prosthetic device ( wig) Why not wear that?" Well I have a few reasons, one being I've never worn it yet so I can't exactly make a gradual change, another being I just think it's fake, it's a nice wig but for someone like me who has never even worn blush every day I can't imagine putting on my fake hair, it's just not me.

Also no hair is the summer is alot better than no hair in NNY in January ( just sayin').

I have 4 more radiation appointments left and then I'm done...hummm, then what? I've been doing this so long I think I'm going to feel a bit lost when it's all over. Well not totally over, I go back to the oncologist in the beginning of February, I don't know if they're going to do any tests or just say hello. The hard part is thinking if they're going to do more tests what will the results be, but again this isn't anything I have any control over so I just have to stay positive and realize that this is now part of my life and I can't let it stop me from living a happy and peaceful life.

They tell me I'll be feeling the effects of this bout of radiation for several months, just like last time because the radiation is in my system that long. Thankfully so far I haven had any horrible side effects, just the hair loss and a bit of memory loss ( people are kind about finishing sentences for me) and of course the ever present tired feeling ( naps are gifts from God). So I guess by summer all things going well, I should just about be back to me ( notice I didn't say normal).

Speaking of naps I think I feel one calling my name. :)

Not a Messy Desk but a Full One

2011-01-14T05:53:00.000-08:00

This week is more about work and home than cancer ( this could be a good sign I think). Anyway since I've been back to work part time there has been lots for me to do, not the least of which are yearly grants, year end reports and getting our yearly Pasta for CASA fundraiser rolling. It seems I've lost my mail merge brain cells and I had to enlist the help of our Office Administrator Cindy to help me, thank goodness she still has all of her mail merge cells!

That done it was time to move on to other projects that seem to be on hold because my email isn't working. apparently I can send someone an email but if they hit reply I never see that mail, I know this because I've had a compaint or two, we've been waiting 2 days now for the computer guy to show up and fix this.

Meanwhile at home I came home to my 84 yr old mother pitching a hissy because her phone was dead. My friend Larry talked to the cable company and got it going only to have it die another 3 days in a row ( they're coming today in person to fix it). Apparently an 84 yr old woman without a phone is like a junky without a fix, withdrawal isn't pretty.

Now, you may think ick, some week but there's more. One morning as I was drinking my coffee I hear something dripping, now in a house this old, that's never a good thing. I followed the noise to water dripping out of the kitchen ceiling onto the refrigerator, most likely from the upstairs bathroom. Oh YAY. So we called the plumber who just happened to be in our town and he came over and discovered a leak in the tub upstairs ( this tub should be sent to the Smithsonian's gallery of what things should never look like when they get old). Bless him he fixed it (sort of) it still drips, just down the drain now not behind the tub. If I ever won the lottery the very first thing I'd do is get a new tub but as it is that's what we got (ugh).

Then this AM I wake up with a head splitting headache and some dizziness that seems to be OK as long as I don't move much, I think it could be radiation related or maybe it's phone/tub stress..I'll ask then when I go to get toasted this afternoon. I did stay home from work though because , headache, dizzy queasy isn't something I want to share if it isn't radiation related. Thankfully Larry will take me to radiation this afternoon, and maybe by then the phone guy will have been here and Mom can get her fix. We're also getting her a track phone ( for emergencies like to call me to tell me the phone won't work...kinda like audio methadone :).

Hope you all are having a good week and the snow didn't bother too many of you !

Brain Radiation Days

2011-01-08T10:19:00.000-08:00

This looks very much like the mask I wear for brain radiation, this isn't mine. You lay down on the table and they put this on ( it's tight) and then they attach it to the table. they don't want your head moving around while they're zapping you...works for me. So I'm about 1/2 way through already and everything seems to be going well although I know from experience that radiation can build up and then slap you silly when you're not expecting it. I'm hoping this dosen't happen.

The big news is I actually ate a 1/4 pounder with cheese this week ( I know, if I was going to pick a burger why one of those?) Well it was on my way home and I was hungry and I thought if I can't swallow it no big loss :). So I am a happy camper, this means I can eat some other sandwich type things again too, ( unlike the oyster cracker that I just got stuck in my throat while trying to eat some soup...i knew I should stay away from the soup LOL).

Still no pizza but it'll come sooner or later and when it does I'm going for the cardiac version with anything and everything on it !

Chris submitted that cute Christmas pic of Rex with the Christmas lights to Syracuse.com and won the photo contest. Pretty cool, they got a dinner gift certificate and Syracuse Stage passes, here's the link.

http://www.syracuse.com/photo-contests/index.ssf/2011/01/holidays_photo_contest_winner.html

Work is busy busy, grants to write and fundraisers to organize but I'm happy with the shorter hours because the radiation still takes it out of me and will for awhile I guess.

I noticed the days are getting longer, that's a good thing, maybe I won't want to be in bed by 8:00pm anymore soon.

Have a great week! Sue

A Brand New Year

2011-01-01T10:05:00.000-08:00

Happy New Year! I hope it will be a great one for all of us. I'm not sure how to judge last year, I mean they told me I had cancer ( bad), then they told me it was gone ( awesome) BUT best of all was the arrival of Rexton so I guess the good outweighs the bad. Hopefully 2011 will continue better than it started with me having a 24 hour stomach bug..I haven't had one of those in years and I hope to never have one again. Chemo was a walk in the park compared to that, well, except I still have my hair.

So I've had a weeks worth of radiation treatments to my brain, so far so good although I know it takes awhile to "cook". They did tell me that if your hair is really short ( as mine is) sometimes it won't fall out, that would be nice.

I'm sitting here watching it rain thinking about all you folks who got buried last week, I hope things are clearing out for you. We're supposed to get some lake effect tomorrow but we're so used to it we don't even blink.

Here's hoping 2011 brings you all you're hoping for and more and my resolution is to get to see some of you this year!!

Ocologist Visit and other stuff

2010-12-23T08:12:00.000-08:00

So it was the radiologist that gave me the good news and then I had to go to the oncologist. First though I went to the radiologist because now I'm going to have some preventative radiation of the brain. Apparently this can mess with your memory and make your hair fall out but it keeps whatever cancer cells are left ( if any) from traveling north . So I went for the set up this week, interesting that's for sure. First they put this wet mesh mask over your face and they attatch it to the table you're laying on..if you are claustrophobic this is not for you. Then they do the set up as to where they're gonna ray gun you with radiation. Thankfully this time they marked the mask and not my head ( I had visions of walking around with black dots all over my head.) Anyway this took about 40 minutes ( hey take your time it's my brain we're messing with)and I have to say I was ready to be done and get that mask off by then, The actual treatment only lasts 10-15 minutes so after this set up that'll be a piece of cake. OK so I got that done I might start the radiation next week but I haven't heard from them so we'll see.

Next I go to the oncologist who is a rather bland guy, compared to the radiologist who is Mr. Sunshine. Anyway he dosen't know I know the results so he pulls out the report and asks if I have bronchitis ( I do) and then says well they say they can't find anything so thats good. A congrats we managed to get rid of this disease would have been nice but noooo. So then he starts to try and sell me on the preventative radiation and says he's gonna call the radiologist so I had to tell him he already knew and I'd seen him about treatment already, he seemed amused or maybe he was just happy he didn't have to try and talk me into this because it is a bit controversial. So that was all he had to say except I'll see him in 6 weeks...really exciting guy that one.

Meantime I went to my regular Dr this AM for a B12 shot and everyone in the offie was doing the happy dance when I left. Cool people there.

So tomorrow is Christmas, Chris, Jenny and the baby are coming up and the baby is teething..oh well nothing I haven't been through before.

I hope you all have a great holiday and you all get what you want ( I sure did). Remember the reason for the season ( no not the commercials. ) This year I will hopefully get to watch a Christmas Story all the way through, I've seen that movie at least a dozen times but never all at once.( I do love the Chinese restaurant scene though.)

Have a very Merry Christmas and joy to you all!

My Christmas Gift

2010-12-17T12:34:00.001-08:00

This is the Christmas card from Chris' family, that's my beautiful grandson! The good news is I think I'll be around to see him say "Dad what were you thinkin' when you took that picture" LOL

The very good news is I got the PET Scan results from my wonderful radiologist ( I was supposed to wait until next week and get them from the oncologist) who wanted me to actually look forward to Christmas. The news is there was NO cancer detected...did ya get that? NO cancer detected. I cried when the poor guy told me over the phone.Now I get to have some preventative brain radiation so my journey isn't over yet ( so the blog goes on). I need to thank all of you because if I didn't have your prayers and support who knows what the results would have been? I believe we ALL made this happen and I thank you all from the bottom of my cancer free heart and lungs :) I guess I was right when I told Mr. Cancer he picked the wrong bitch!

Gee if I could eat a great meal I think I'd go have one but the side effects linger on, this too shall pass and if not, oh well, I made it through the worst part and I'll carry on from here!

So, that's the news sooner than I thought to be able to share it with you, gotta love Dr. DeBlazio!

Cheers!

PET Scan Day

2010-12-16T12:50:00.000-08:00

It's snowing here again, no big surprise and OK before Christmas, it can stop after New Years ad make me happy.

Today was my PET scan, for those of you who haven't had one or those of you who might I have one word BORING. Thankfully the tech was great and it took only one stick to make me radioactive. Then comes the fun, oh I should mention my hospital dosen't own a pet scan machine so they truck a machine and a team to run it in every Thursday. This truck comes from Massachusetts someplace and they cover several smaller hospitals in this area. So when the come for you they take you through the bowels of the hospital out to a loading dock and you get on this open elevator and up to the PET lab you go. OK so you're in this truck that's divided into 3 spaces ( that I could see) the room where they "stick' you, the room where the computers are that run the machine and the room where the machine is itself.

So I go get my radioactive shot and then the tech says " now you have to wait for 45 minutes" what? I'm sitting in a room on a truck in December, not a magazine in sight, no radio, no warning that this was going to happen so I could bring a book or a crossword puzzle...nope just me and the room. He leaves and shuts the door and says he'll see me in 45 minutes, gee thanks. So I sat for 45 minutes, trying to remember old song lyrics, renaming the 7 dwarves evil things, and generally thinking "this is stupid". So they came to get me and then I had to go to the machine room, the next tech said " butt here, head here and put your arms over your head" yippee! I got to lay that way for about 30 minutes although I must say at least the machine made a nice humming noise and I did move back and forth every once in awhile. Oh yeah did I mention by now it was almost 1pm and I hadn't had anything to eat or drink yet ( OK honestly I had some water because they said I could). The machine room was COLD( well yeah it's a truck), they told me to stay still...I hope my shivering didn't mess things up. Anyway finally they came in and said once I went back through the machine they would help me up and I could put myself together and then I was done. YAY We then ran to Dennys where it took me awhile but I found something I could eat and I had a nice hot cup of coffee and life was again good.

So now I get to wait for the results, I happened to run into the radiology Dr. and he said to call him early next week because he'd get the results before the oncologist who ordered the test.

I've decided I can get freaky about these results, they will be what they are and then we'll decide what the next step is, either way it's certainly not the end of treatment to be rid of this crazy disease and it's certainly not the end of me. I still have way too many people to drive crazy before I check out.

Anyway, I have gifts to wrap and some to finish sewing, it's snowing like crazy and it sure is pretty ( I'm home for the night, don't ask me what I think when I'm cleaning off my car in the AM so I can get to work).

When I get the test results I'll share them with you ( good or bad) but for now have a great weekend and let's all keep good thoughts !

Drs. Drive Me Crazy!!

2010-12-09T11:49:00.000-08:00

OK so I got a call this week from the PA of the Dr. who handles my radiation g saying they hadn't heard from the oncologist so he called and got the CT scan results and read them himself and everything looked good to him so when did I want to schedule the brain radiation ( that you can only have if there's no cancer detected).

I was confused and told him that the other oncologist had scheduled me for a PET scan because he wasn't sure that I was cancer free. The PA said that the radiologist read the results and he had read them and everything looked fine to them but if the Oncologist wanted a PET scan that was OK. He asked when it was and I told him and told him I had to wait over a week for the results and he said they could get them sooner because I'm having the test at the hospital where I have the radiation and he would have the radiologist call the other Dr and he could let me know what the results were sooner if I wanted him to. ( if I wanted him to???) These guys need to talk to each other !

So I'm now confused, am I OK or not OK? I certainly want to believe the radiologist who BTW worked at Sloan Kettering before he got here so he could "relax" a bit. I had pretty much decided that the results of the PET scan would be what they would be and once we found out what they were we'd decide what to do from there, the party isn't over we're just trying to figure out if it's a sit down dinner or a buffet. Either way I'm not going to let it ruin my grandson's first Christmas!

OK enough of my frustration, I guess they're both looking out for my best interest in their own way they just don't communicate with each other very well ( you'd think they would since they're both the only cancer specialists in this town). My GP who hasn't seen a test result tells me I'm going to be fine, maybe I should just listen to him I've been going to him for over 20 years he knows me better than the other 2 do.

Well it's time to go make some more presents, it keeps me busy and my mind occupied with things other than cancer...that's a good thing.

Another Week

2010-12-03T12:15:00.000-08:00

This is a picture of me and Rex from Thanksgiving. Normally I hate pics of me but with the cutest little guy in the world in it I suppose I can stand it.

I think Chris took about 50 pics of us so this probably isn't the best one but I like it. Aren't digital cameras amazing? I remember taking the pics then going to the drug store or Photo Mat and waiting 3 or 4 days if you were lucky. Digital photography is awesome! I must have over 1000 pics of Rex by now, Chris is a little camera happy :).

It's been a quiet week here except for the several inches of snow we got yesterday. The roads are all clear and the snow is still clean so it looks nice. Makes me feel like the holidays too.

I've been shopping and wrapping presents, sometimes I even forget I've been sick until I tire myself out.

Even though I still can't eat alot of different things, my appetite is back..now all I have to do is figure out how to keep this weight off that I've lost when real food ( at least what I can eat of it) tastes so good. I even got my taste back for coffee, for the longest time I couldn't drink it because it tasted so bad to me, then all of a sudden it's OK again...go figure.

I still have a couple of weeks until the next test so I'm trying to enjoy the holidays and keep myself busy. I made another rag quilt this week and I still have some gifts to make so maybe I can sew instead of eat :).

I did find out that cleaning the snow off my van with only one fully working lung can be a challenge, I've decided that turning it on, going back in the house and hoping enough snow melts off so I can drive it is a better plan. We'll see when the real snow flies. Otherwise I'll just have to start sooner and take more breaks I guess. Could be worse, at least we do have someone who plows the driveway.

Work has been keeping me busy, we got new computers that seem to have strange messages on them every day or my old programs won't work with the new OS. Today it told me that my Windows program wasn't the real thing, we called the guy we bought the computers from, hopefully he has an explanation. The person who's going to be doing the other 1/2 of my job starts next week so I guess I'll be busy training her for awhile, that should be fun.

Well I guess I'll go sew something to keep me busy, have a great week!

I Am Thankful

2010-11-24T10:06:00.001-08:00

I want to take this time to wish you all a Happy Thanksgiving and I hope you all have a wonderful day with your family and friends.

Also I want to thank you all for reading my ramblings and commenting on them when you feel like it. This blog has helped to keep me sane since last May and I thank you all for being a part of it and my adventures.

I have a lot to be thankful for this year, I have a beautiful new grandson ( that I don't see nearly enough, I should visit), I still have a job and a place to work where they care about my situation and condition as well as the job that needs to get done. I have a great guy who's been with me for every test, scan, chemotherapy appointment, radiation appointment and continues to be my sounding board and a tower of strength, my Mom is still here and although we drive each other crazy, it's good to see her every day and know that if it's soup I want it's soup I'll get, I have Chris and Jenny and know if I need them they'll be there and I have all of you.

I've said before I'm a very lucky person, sure I have cancer but I could be alone in this world with no one to care, I could be uninsured not knowing how I was going to afford medical care, I could be in a lot of physical discomfort and I'm not most of the time. I don't know what the future is going to hold but then which of us do?

So thank you all for all of your prayers, positive energy, funny comments and friendship. You all help to make this road I'm traveling easier and you point me in the right direction when I need to find my way.

If you drink please toast yourself from me, if you don't ,have something yummy and know I'm saluting you and your friendship. Happy Thanksgiving to everyone with my appreciation and affection.

Wow I never fainted before.

2010-11-17T15:48:00.000-08:00

Today after work I decided to finally run an errand I keep forgetting and get new batteries put in some of my Fossil watches ( I love Fossil watches I have a few). When I got to the mall my stomach was feeling a bit funny but I didn't really think much of it. By the time I got to the watch kiosk in the mall I needed a ladies room. The young lady at the watch place told me which store could help me out and off I went. As I was on my way I noticed that I was breaking out into a cold sweat , I found a sales lady who pointed me in the direction of the ladies room and also mentioned that I looked a bit flushed. I used the ladies room and while I was in there I called Larry and told him I was at the mall and not feeling very well ( was was sweating like crazy by now)he said he was on his way. I went back out to the watch place and the girl was alarmed at how I looked, I told her I was a cancer patient and she said that she had been several years ago and she knew how things could creep up on you. I went and sat down until she was done with my watches and at the same time I saw Larry. I went up to the counter and evidently I passed out for a few seconds while paying for my watches. Larry revived me and they sat me down again and the mall emergency gentleman came over. By then I was feeling better , they got my coat off and gave me some water, I told them I didn't want an ambulance. They pushed me in a wheelchair to my car and Larry brought me home.Turns out the mall gentleman's mother also has cancer and he understood my problem . Everyone at the mall was extremely nice and made sure I was OK before they let me leave, I appreciate their help.

For me this means I'll be Internet shopping or taking Larry with me from now no. I don't know what caused this but it was scary and I'm still shaky if not dizzy. The kindness of people just touches me and since I've been sick it seems I've met so many kind and helpful people, I need to find a way to thank them all.

The good news is I can now wear 3 of my Fossil watches again since they now have batteries :)

Results Finally

2010-11-15T12:42:00.000-08:00

The wait was killing me and then I get to the Dr. and they forget me. I literally had to wait 45 minutes before one of the techs came out and said OMG I forgot you.

Anyway, the news is OK not great as in no cancer detected but OK as in the tumor has shruken consierably from 20 X 11 cm to 6 X 3cm. What we don't know is if it is active cancer or just some scar tissue or the tumor isn't done shrinking yet. It seems radiation can still be working for another month and the tumor can shrink more, not be active cancer, or be active cancer ( this is an option we don't want). So, a month from now I get to have some scanziety all over again while awaiting PET scan results.

I'm still basically living on soup and I'm still tired of it, I want a bacon cheeseburger in the worst way...ahhh maybe next week.

No Results but Angels Among Us

2010-11-10T12:42:00.000-08:00

Today I had a ct scan to find out if all the cancer is gone. What I didn't know is that if I had gone to the hospital for the test instead of the lab I could have the results now and be sharing them with you. Next time I'll know better. I'm not in any hurry to go back to the lab anyway since it took the nurse 3 tries before she could find a working vein ( ouch). Anyway that part is done and now I havwe to wait until Monday to see where we stand. With so much positive energy from all of you I don't know how I could get anything but good results. Not to mention the angel I met in Dunkin Donuts this AM after the scan.

Larry and I went to get some breakfast because I couldn't eat or drink anything before the scan. Iced tea was sounding very good to me about then. So we're on line and there's a woman in front of us and she turns around and looks at my bald head and says " I hope you don't mind my asking, are you in recovery?" I said "well I was just at the lab to find that out but I won't know for a few days." She said " I'm in recovery too, I think you're going to be fine." I said " thank you" . Anyway we order our things and the only table is next to this woman , so I sit next to her and she says " I hope I didn't bother you mentioning cancer but I know miracles happen because they happened to me" I told her no it was fine, actually it's nice to meet people who have survived and are so positive. She said " I was given 6 months to live 3 years ago, I have leukemia." I told her about my cancer and how lucky I was it hadn't spread and she said : "All I can say to you is miracles happen " and she asked my first name . She said she would pray for me and she wouldn't forget because I was going to be OK.

So I'm sitting in the darn Dunkin Donuts crying my eyes out knowing that she wasn't just a cancer survivor but someone sent to make me feel better when I was so stressed about the test and what the future is going to hold. God does funny things sometimes, gotta love him!

BTW the angel in the pic is one I made I call her Pearl E. Gates, she's made to make people smile.

Scanziety

2010-11-04T16:32:00.000-07:00

Next week I'm scheduled to have the CT Scan that will tell us if my treatment was successful and the tumor is gone. I don't mind saying I'm pretty scared. They tell me the odds are good that the treatment worked and I'll be tumor free, but until I hear it for myself I'm going to be shaky for sure.

Anyway again I'm asking for good thoughts, prayers ,vibes, thoughts and anything else you can muster up that the results will be good and I can think about starting preventative care. Which involves more radiation but not as intense as before.

Update on the 2 cats. They chase each other around the house and hiss alot but they seem to enjoy it, mostly they drive my Mom crazy.

I still can't eat solid food, I get frustrated but there dosen't seem to be anything I can do until the nerves heal. I got a pill stuck in my throat yesterday and had to call the Dr. to find out what to do. Gotta love the country Dr. he said eat a wad of bread and take a drink of milk and if it dosen't work come in. It worked, now I'm just sore from all the coughing.

Winter is fast approaching here, there's been frost on the car a couple of mornings. This was the year I was going to get a car starter so I didn't have to run through the snow to start the car but medical bills used up that little stash of cash, I'm glad I had it put aside even if I didn't use it for a car starter. I've been fortunate to have pretty decent medical coverage so if I had to spend a few unplanned dollars it's OK.

Rex is growing like a weed and I wish I could spend more time with him, maybe that dream will come true before too long, we never know whwat the future might bring.

Well I hope my next message is full of good news, I have faith that what's supposed to happen will happen.

Please keep the good thoughts coming.

Hi Ho Hi Ho It's Back to Work I Go

2010-10-25T09:09:00.001-07:00

Last Monday I started back to work part time. I'll admit I was a bit nervous as to whether I could manage it but I think it went pretty well. I went home most afternoons and took a little nap and that seemed to do the trick. Also B12 shots from my Dr. probably don't hurt. I was greeted by a big bouquet of balloons and that definitely made my first day back joyful.

My new kitten has turned into being terror kitty. she has no sense of caution and will "attack" anything, climb everything and run at top speed through the house for reasons only she knows. Poor Emmy, she mostly hisses and growls and this little devil of a Daisy won't even back up.

Yesterday Rexton was baptised in the Brownville Methodist church across the street from my house. This is the church that Chris grew up in so the folks there were happy to see him and thrilled to meet Rex. Rex was a great little trooper laughing and smiling at everyone and even smiling when the water crossed his head. It was almost as if he knew the celebration was for him! I wish they lived closer so I could spend more time with him.

As for me, things are pretty much the same, I still can't swallow whole food and I don't mind saying I'm getting damn sick and tired of soup, I'm trying to add a few soft things but that all depends on how my stomach will accept them as well. I'm still having bouts of random nausea. If I knew what was causing them I'd sure as heck stop whatever it was. They tell me this will all go away but no one seems to want to make an estimate as to when. The only answer I get is " it varys" ugh.

Anyway that's how things are going here, I hoe you all are doing well and getting ready for the holidays, hopefully I'll be able to eat by then.

Emmy, meet Daisy

2010-10-16T06:31:00.000-07:00

Imagine my surprise this morning when I woke up and heard 2 cats meowing at the top of their lungs! Actually once cat and one kitten. Daisy the new kid in town is shut in the sewing room at night ( with a litter box, food and water and a light on) so I knew where she was, but when I hit the bottom of the stairs on my way to the kitchen for my morning tea, low and behold there was Emmy!

Emmy was telling my all about her 10 day adventure which she looked no worse for the wear ( what happens in kitty land stays in kitty land I guess). It's been over an hour and she still really hasn't stopped except to take a very brief nap on my bed and growl at Daisy who has been sent back to the sewing room for now and isn't very happy about it.

Ahhh peace at the moment, they both must be gearing up for a new verbal assault. I've never had 2 cats before, I have to believe once they get used to each other it'll be OK but what do I do in the meantime? The first thing I'm going to do it close up Miss Emmy's escape hatch, although I'm glad I left it open for as long as I did or she wouldn't have gotten back in. Then we have to close up the route to the escape hatch, then I can open the basemenet again because that's Emmy's fave place ( figures for a black cat). I haven't let Daisy downstairs yet because she's too little for all the places a kitty can get stuck down there, we got Emmy full grown so she didn't have that problem. Maybe one will reign over the upstairs and one will reign the downstairs..OY. BTW my mother is not pleased we now have 2 cats, oh well it'll give her something to talk to her friends about on the phone for a week or two.

All this and I start back to work on Monday, it never rains but it pours in my life guess that's what keeps me crazy and happy.

What a nice surprise!

2010-10-12T13:00:00.000-07:00

As most of you know the town I live in doesn't deliver the mail. You have to go to the Post Office to pick it up every day. So the post office is like the social hub of Brownville, people meet and share their lives daily. I see a lot of the post master because I'm always picking up mail that didn't fit in the box for my mother ( she is legend for so much mail). We get to chatting about our lives and such and become friends. I've been especially close to the current post master and her predecessor for various reasons. It's an odd , once a day kind of relationship but it works. Today when I went in to buy some stamps, Rebecca the current post master handed me a box that said to Sue from Rebecca and Donna, we hope you're feeling better.

I was flabbergasted when I opened this box and found this beautiful quilt that has Bible verses sewn through it. Each verse is printed on it's own square and they are joined with beautiful fabrics. It was made by the Pulaski Comfort Quilters from the Pulaski Wesleyan Church. I'll admit I misted up a bit, I never would have thought that these two ladies that I see so briefly every day would have thought of me so kindly. It is a gift I will cherish forever and I'm planning on finding a wall to hang it on in the very near future.

Emmy where are you?

2010-10-10T10:20:00.000-07:00

My cat ran away this week. She didn't just scoot out a door that was open, she actually ripped a window covering off a basement window and took off. I loved that cat. People tell me she may come back but I have to think if she was going to she'd be back when it's below freezing outside. Anyway, another loss to deal with... I'm tired. ( on a side note my 84 yr old mother was sure she'd found Emmy, dead in the yard and it turned out to be a pile of potting soil that had been there all summer..this is my life )

I think I'm going through some kind of PTSD because I've been very emotional lately. I'm in that"what now?" stage of treatment . At the beginning everyone is in a huge hurry to get treatment started and offer help and the Drs. all have their bit to say. Then treatment begins and you feel well and then you feel sick and then you feel well and it's a roller coaster of symptoms good, bad and otherwise. It's radiation everyday so there are people to talk to who understand what you're going through, whether professionals or patients and then one day it all stops.

I refer to this time as cancer limbo because I'm not undergoing treatment although I'm still dealing with some pretty nasty side effects. I don't how how successful the treatment has been and I won't for another month or more, so here I am. I have to say I feel a bit lost.

Next week I'm going back to work, I'm a bit nervous about this too, not because I don't want to, I really do, but because of my side effects that still haunt me when least expected. I'm trying to find a way to keep them at bay for the 3 1/2 hours I'll be at work. Maybe if my mind is occupied with other things they'll go away, I can only hope so.

So now I have to decide if I'll get another cat, I probably will and if Emmy should come back ( hope springs eternal) they'll just have to get along.

As Time Goes By

2010-09-29T14:18:00.000-07:00

My dear friend Diane passed away on Sunday. It seems like just yesterday that we were freshmen room mates at Luther College , our first time away from home, trying to act brave and "cool". Who'd have thought that September day over 30 years ago would lead me to this September day. I will miss her, there are memories that only we shared like our madcap trip across country to attend college in Nebraska, and twisting pretzles on a hot summer afternoon in Kutztown, PA. These things seem so long ago and yet not. Rest well my friend.
I found out this week that my radiation treatments will be done next week. I only have 6 to go and then maybe my body can start to heal and I can get closer to the long wanted bacon cheeseburger. This may sound crazy but I'm going to miss going there everyday. It's been a place of security, where folks knew what I was going through and were there to help if I needed it. I think I'm going to feel a bit abandoned for awhile. It won't be long though and I'll be back talking about what we do next. Preventative measures will start in a couple of months.
I'm hoping to go back to work soon too, it'll be good to replace one routine with another and this routine is definately less frightening. My only concern is that I still get so tired very quickly but I'll only be working part time and once I get on a schedule that should help alot.
My grandson is going to be baptized this Sunday, the kids are doing it here in the church that Chris grew up in across that street from our house. Wow I remember taking him to Sunday school when he was just a tot and now Rex will be part of that church family.
Many people have told me that think I should publish this blog. I would like to, with added comments as I look back. I have no clue about publishing except for self publishing and I think this would be too big a project for that. I want to share these thoughts with folks who are going through the same thing and also with the people around them. I've found comfort in sharing my thoughts and I hope I can help others. So if any of you know anyone who knows something about publishing or who might send me in the right direction please let me know. I know the story isn't over but I'd like to get a start on putting it together.

Value Your Friends

2010-09-25T09:34:00.000-07:00

I got some very sad news this morning. My college roommate Diane is now in a coma due to complications from colon/liver cancer. She has been fighting this diagnosis for the past 4 years and it appears that the Drs. don't think she'll awake from her coma. Trixie , as I 've always called her is a person who exemplifies what " good people" means. Without her around I wouldn't know what 1/2 of our former classmates were up to, I wouldn't have 10 stories in a book I put together for the program I run and I'd never know how to twist a soft pretzel.

So here I am fighting cancer myself and hearing that my dear friend could be losing her battle...this totally stinks! I was selfishly looking forward to the day when we could sit on a porch somplace with a tall cool drink and swap "war" stories, now they're telling me this may never happen. Dammit!!

I know we all get involved in our own daily lives , work, family , whatever but our friends are the family we pick for ourselves so please let them know you love them and value them even when things are going well . It's never too soon to have that tall glass of something and talk about your lives even if they aren't as close as they once were.

Time Flies

2010-09-22T10:40:00.000-07:00

Monday I went back to the Dr. to have him decide if I should restart radiation or wait awhile. He explained to me that with the type of cancer I have, treatment is time sensitive and if we wait too long between treatments it's like losing weeks of treatment. We decided it was beneficial to start again so we did. He said at the time I have 7 or 11 treatments left depending on how burned my skin is after 7. He may decided enough is enough and end treatment there or continue for the last 4. I'll know this next week sometime.

In the mean time I'm still having tummy issues from tech chemotherapy that ended 3 weeks ago. I had no idea this poison could hang around in your system causing chaos for so long. The tech at radiation told me it could go on for awhile yet. I have to say this past weekend was one of the lowest points in my treatment because I was burned, can't swallow anything but liquid and anything I did swallow didn't stay with me for long. I decided I was sick and tired of being sick and tired. But then I reminded myself that this part is almost over and it's only another week or so of treatment, and with every day that goes by I'm closer to getting back to "normal". And, what a good time I'm going to have eating my way across Watertown when I can eat something besides soup again !

Also I've been very concerned about my job and not being there and what was going to happen in the future. I went in and spoke with the director last week and I think we've come up with a plan that will allow me to work half time and the center is going to hire someone else to work half time. That way I can keep doing what I like but I won't be over doing it and the program won't suffer either. This takes a lot of stress away from me right now and I appreciate the way we were able to come to a solution that is good for everyone. Hopefully I'll be back to work no later than mid-October.

Have I mentioned my amazingly adorable grandson yet? No ? Well he is now almost 6 months old and is sitting up and eating oatmeal and all manner of veggies and he is the light of my life !

So it looks like we're coming to the end of this chapter anyway. In the future the Drs and I will be talking abot preventative measures like brain radiation ( Ugh scary) but that'll be after we've retested to find out if this treatment plan has been successful and that nasty tumor has hit the road. We probably won't know that til November some time so keep the prayers and positive energy coming !!

Stay tuned for the update as to when I'll be done cooking in the radiation room !

Too Hot to Handle

2010-09-13T10:47:00.000-07:00

Last Friday when I went to radiation the tech said she thought I was getting a bit too red. She told me to make sure I kept cream on my neck and chest all weekend and she'd make sure I saw the Dr. first thing Monday.

I am a very fair skinned person and have a tendency to burn very easily, the radiation is very , very strong and she was right I was getting very red. Anyone who's ever had a very bad sunburn knows you tend to keep "cooking" even after you get in out of the sun and the same is true for radiation, the only difference being you can't use sunscreen when you're getting radiation. So as the weekend progressed so did my burn. When I got up this morning and had to wash off the burn cream in order to go to the Dr. I thought I was gonna die.

It's never a good thing when the Dr. walks through the examining room door and says " Good Morn...oh my gosh you certainly have a nasty burn going on there!" So I've been grounded from radiation until maybe Thursday, which is OK by me because it gives my skin a chance to heal and my esophagus a chance to heal too. It does mean I'll be going to radiation an extra week though, so I think that takes me almost into October. Oh well.

Yesterday was my first Grandparents Day. Chris and Jenny brought Rex up for a visit and he promptly fell asleep on my lap. There's nothing better than a warm cuddly baby to make the world a good place. The other thing I love is the absolute joy that I see in Chris as he interacts with his son, that child will always know his Daddy loves him no matter what..wow!

So I'm done with chemo, on a break from radiation, aside from the side effects it's almost going to be like regular life for a day or two. I guess I'd better not get to used to it thought there's plenty more treatment to come.

Autumn and Other Stuff

2010-09-08T17:12:00.000-07:00

Labor Day has passed, I'm not sure where my sunner went, it was mostly burried in a haze of Dr.'s appointments and treatments. Autumn is my favorite time of year. I love the colors and the cooler weather and I love the apples and cider and trips to the cider mill. This year I'll most likely only be able to enjoy cider adn apple sauce but that's OK. Our local cider mill makes a great cider icey too. I'll be heading up there to get one pretty soon.

So, if I was dehydrated last week, I've been REALLY dehydrated this week. So much so that I had to go back to the Dr. to get 2 IVs of saline and electrolytes. I thought I was done with the IVs but that'll teach me! I do feel much better after the infusions though. Hopefully thata'll be the end of my chemo problems, although this last drug still has a hold on my system that it seems not to want to let go. The Dr. gave me better drugs to handle the constant nausea and they seem to be doing the trick. You and only imagine my Mother when for several days I existed on only beef boullion and jello !

So under the ignorance is bliss heading I found out yesterday that the protocol I've been following with the chemo oand the radiation is a one of the toughest there is. I had no idea, but apparently the drugs I was given and the length of ratiation are very taxing for many people. I must say until I got this last new drug that I wouldn't have gotten if the other hadn't become unavailable; my side effects while bothersome were nothing like I've experienced in the past 2 weeks. How fortunate for me that I was so much better for the first 3/4 of the chemotherapy and my sympathies to those who have a horrible time with chemo all the time like I have had the past 2 weeks.

So now I still have about 3 weeks of radiation to go (every day M-F). I feel like a "crispy critter" now, with my radiation induced mega tan. We just changed target spots so hopefull my already crispy skin will get a bit of a break, but probably not. My diet is still liquid and very soft foods, yogurt, soup, some macaroni, ice cream etc. I can say I would kill for a juicy bacon cheeseburger but it's going to be awhile before I can have one of those again.

After radiation is some, then we wait a month or two for everything inside me to calm down and then we see how successful the treatment has been. I think this waiting is going to be tough but I'm praying the results are good and I can get on with my real life.

Anyway, if you get the chance go find some beautiful fall leaves and enjoy the glory of nature. I'll keep you posted on what's happening here while sipping a cider icee!

No More Chemo !

2010-08-31T11:14:00.001-07:00

So today was my last chemotherapy appointment, all I can say is it's a darn good thing it was the last one and not the first one or I might never have gone back.

I guess part of the agony was my own fault ( or so they'd have me believe) because I let myself get dehydrated. I didn't know I was dehydrated but I guess I was supposed to know this when I was dizzy and queasy and ached like I had the flu. I thought they were just side effects from the new chemo drug. Also losing 7 lbs in just under a week should be a dead give away but I was just rejoicing in losing seven lbs..silly me.

Anyway the young woman who always takes my blood and knows my veins like her own had the nerve to go on vacation and leave me with a newbie who did a fine job but there was alot of searching for a vein involved why ? beacuse I let myself get dehydrated!

Next the RN who's put the chemo port in every time I've been there decided to let the new nurse on the block try and find a vein. 'My" nurse Donna always put the port in my left hand because she asked if I was right or left handed, new nurse didn't ask and proceeded to dig around in my right hand until I was almost in tears and Donna had to come and help her out anyway. Again my fault, I was dehydrated.

I still had to get the substitute drug because my ususal cocktail was still unavailable. This new drug dosen't have "side" effects" it has walk right up and slap you on the face effects that started before I ever left the Drs. office. Let me just say that these side effects can certaily make a person dehydrated within minutes.

So after about 4 hours I was done, done, done adn now I have a months worth of radiation to deal with and then we see how successful we were. I'm hoping for very!

So the dance of the IV poles has come to an end and no more ports in my hand for days at a time and in a week or so the side effects will fade away. Life is good.

This and That

2010-08-27T09:33:00.000-07:00

First let me thank everyone for the birthday wishes I appreciate them all.

After a certain age I pretty much gave up on making a big deal about birthdays but considering the past few months, I was happy to see this one.

My birthday always means that autumn is close. I remember getting school supplies for my birthday most years when I was little. It's a good thing I was usually happier with come cool colored pencils than a doll anyway. Again thank you all for the good thoughts.

In an interesting development in the world of medicine it seems one of the chemotherapy drugs that I have been receiving is virtually unavailable across the country. I haven't been able to discover why this is but it seems to be a nation wide issue. So this week was supposed to be my last week of chemo but it turns out we had to go to plan B with a different drug. Normally I go 3 days in one week and then I'm off 2 weeks. This week I only went 1 day and now I have to go 1 day next week as well. But then I'm done with chemo YAY! This new drug brought a whole new list of side effects with it so I've been a bit queasy and even more tired. I 'm also having radiation every day.

Speaking of radiation, the folks there gave me a nice piece of cake for my B'day. They are a great bunch of peoople, I know I couldn't deal with what they deal with day after day and keep the positive attitude they have.

Here's hoping the the chemo and the radiation will have the desired effects and I'll be on the road to the next step in treatment which is maintenance and prevention.

I'm hoping to feel well enough tomorrow to go to a craft show up by the river. I haven't been anyplace but the Dr. and the occasional store for months so I'm looking forward to seeing some well made crafts and maybe doing some early Christmas shopping.

Well I think it's time for a nap, this new drug is knocking me out, I'm really glad I only have to deal with it one more time !

Top 10 OK Things About Having a REALLY Sore Throat

2010-08-22T03:07:00.000-07:00

In an effort to look on the bright side I've decided to put together a list of the top 10 OK things about having a radiated ( burnt) throat. If you'd like to add to the list feel free.

10. Something that feels this bad has to be working.
9. No more fast food, they can't hear me at the drive through and I can't swallow it anyway.
8. No more singing in the shower and having my "performance"reviewed by my mother. ( true story)
7. I'm learning how to eat slowly
6. I get to use the Ninja Pro super blender I couldn't live without and have used twice in a year.
5. I'll get the chance to try every one of the thousands of flavors of Yoplait. (German Chocolate Cake...really?)
4. It is currently impossible for me to "raise my voice" at anyone.
3. My cat thinks I am now the "Cat Whisperer" and she likes it.
2. I only have to shop 2 aisles in the grocery store
and the number one reason having a really sore throat can be ok is:
1. I can eat ice cream for breakfast if I want to!

It's Going to be Quiet for Awhile

2010-08-20T11:25:00.000-07:00

I have just completed week 3 of radiation, because of where my tumor is the radiation is burning my throat and the bottom of my esophagus. Ths makes eating an adventure in soft and or liquid food and I've pretty much lost my voice. They tell me things will stay this way until some weeks after I'm done with radiation which should put it sometime in early October.

This has been and I'm guessing will be one of the biggest challenges so far. There's just so many smoothies one can drink and ice pops one can eat before it all wears thin. Although speaking of thin I might lose a few pounds on this new diet.

I'm not quite sure I understand how some rays of light can make me exhausted most of the time and can make my skin in certain areas look like I've overdone the tanning bed thing but as they say in Cancerland " the cure can be worse than the cancer".

Next week I have to do chemo and radiation again, to be truthful I'm not looking forward to this but then anyone would be foolish to be looking forward to being squeamish for 5 or 6 days although this time I won't care if I eat or not so maybe it'll be OK.

I want to tell you about the woman who has become my "hero". Those of us who go to chemo and radiation frequently get to know each other. While waiting we chat with patients and spouses and the first question usually asked is " where did it get you?". There is this woman , probably my age, who has cancer of the sweat glands, I didn't even know you could get cancer in your sweat glands but apparently she had a primary cancer someplace else and then it moved to her sweat glands. She also walks with 2 canes because of some other problem she has. Well they have begun treating the glands on her forehead and her forhead looks like someone set it on fire and waited awhile to put it out. Many people would be avoiding going out in public because of this but not this lady. Several days a week she sits in the information booth at the hospital door and cheerfully directs people to the right place. I have to say whenever I've about had it with a sore throat and indigestion I just think of her and that's the kick in the butt I need to stay positive and on track.

Anyway if anyone has good smoothie recipes I'd be happy to try them, just a note I'm allergic to bananas and they seem to be in alot of smoothies. I'm ready to use my Ninja Pro blender thingy and make some good stuff!

Sweet Tea and Chemo Brain

2010-08-14T09:04:00.000-07:00

Oddly enough sometimes I think going through chemotherapy is like being pregnant. Maybe it's because of the chemical changes in your body , or maybe not, all I know is I haven't had cravings for things like I do these days since I was pregnant. This week's love is sweet tea, I can't seem to get enough of it. Which is OK because dehydration is always a concern with radiation and chemo. Also it's way better than last week's craving which was steak fries with lots of salt.

I've also discovered that I can't make good sweet tea, I don't know why but mine is always bitter. Thankfully the Lipton company sells gallon jugs of the stuff.

This week was a just radiation week so a couple of days I combined my trip to the hospital with other errands I had to run. One morning I stopped to buy gas and I couldn't get the pump to read my card so I could pay outside so the attendant said I should pre-pay inside. I went inside and got distracted buying a bottle of ( you guessed it) sweet tea, paid for my gas and tea walked out of the store and drove away. When I got to the parking lot of my next stop a nice lady told me my gas cap was open...well of course it was because I left the gas station without ever pumping the gas! This is called chemo brain.

I had two stops to make before I could get back to the gas station ( a Dr.'s appt. and radiation) but I was lucky enough that when I did get back the same woman was still there and she recognized me ( probably hard to forget a large bald woman) and let me pump my gas.

Speaking of chemo brain, I'm down to one last series of chemo treatments and they will happen the week of my birthday, I have a feeling I won't be interested in any cake that day. My oncologists PA apologised and I said "hey if it means I get to have a birthday next year I can totally give this one over to treatment". She liked that, but really I'm very lucky.

Sue, you have lung cancer how can you think you're lucky? Well, yes I do have lung cancer but it hasn't spread anywhere else, so far the treatment while tiring and sometimes sickening hasn't been horrible and I have a great support system of friends, medical professionals and family, so how am I not lucky? I figure if I have to have cancer I did it right. I don't know what the future is going to bring but right now things are going well and that's all I can think about.

So, now I think it's time for some tea, and if anyone out there knows how to make not bitter sweet tea let me know :)

It's hot, it's cold...arghhhhhh

2010-08-08T06:00:00.000-07:00

As I've mentioned, on Friday I finished a tough week of chemo and radiation. Still a bit chemo queasy I decided to just stay in my room and relax. I noticed that my room wasn't feeling very cool and I thought well maybe it was the radiation..it can sometimes make you feel over heated like when you get out of a tanning bed.

So I asked Larry and he said, it wasn't me, the room wasn't it's usual iceberg temperature. He looked at it and tried to blow the dust out of it and did whatever you're supposed to do to try and fix an A/C and declared it on it's way out.

So here was my problem, this was 7:00 on a Friday night and Larry was going to be away on Saturday so we had to figure out something pretty quickly. I should mention that since I've been going through the whole cancer thing the A/C is my life saver because it also keeps a lot of the pollen that I'm allergic to out of my already not so happy lungs.

So the question then became, buy a new one or switch from the sewing room ( as you may remember I waited for that one to get put in so I could actually be able to spend some time sewing). Well, we set my mother to one of the things she does best; making phone calls and soon found out that the warm weather had cleaned smaller room size A/Cs out of the general area but we could wait for the 10pm truck at Walmart if we wanted to.

Needless to say in the next few minutes we were pulling the one out of the sewing room and it was blissful! Until this AM when I noticed it making odd noises ( could this be why I replaced it with the one I had been using and this was still in the attic?). Well the crazy thing is a block of ice ( inside where the filter screen is). So now I'm waiting for it to thaw out and I guess we'll have to figure out why it's not draining or what ever it is they do to get rid of the water.

Hopefully we'll get this all figured out today before it gets really warm again....like that lady said : "It's always something!"

Yay for Friday

2010-08-06T08:49:00.000-07:00

Well I made it through a week of chemo AND radiation, a challenge but done!

I've slept a lot this week, not only because of the insane fatigue but also the queasy feeling the chemo gives me. To me tired and queasy = sleep. It was also very hot and humid up here this week so there really was no place for me to be but in my room in the A/C . Today is beautiful, much cooler and less humid.

Those of you who know my mother know she's obsessed with food, not so much eating it as feeding it to other people. The standard joke is that her tombstone is going to say "what can I get you?". Anyway, the fact that I'm borderline sick to my stomach for 4 or 5 days every time I have chemo is a huge issue for her because I have no idea what I'm going to be able to tolerate from one day to the next. Today a friend of mine took her to the grocery store and before they left she asked me ( just back from chemo and radiation) what I wanted her to get for me. I said " I have no idea" and her response was " can't you just make believe you're not sick to your stomach for a minute and give me an idea?" OY!

I know it can't be easy living with someone who feels yucky a lot of the time and I do try to stay out of every one's way when I'm really feeling icky. I also know it's scary to have someone you love have a disease like cancer and you want to help and you don't know what to do, as someone who's been on both sides of the issue all I can say is neither side is any fun. Having said that though I've learned that if you let it, the disease can consume your daily life. I try very hard not to let this happen, and if I feel myself sliding down that slope I quickly kick myself in the butt and set myself straight.

When I was first diagnosed of course I was scared and angry and all those things but I also didn't have any sense that life goes on anyway. I thought "oh I have cancer, life as we know it will now stop" well it doesn't and it won't and that's a good thing because that's what keeps me going everyday.

So now I get the weekend off before I start radiation again on Monday, my stomach should be back in shape in the next day or so and I can enjoy the cooler weather and let my Mother cook me dinner.

Chemo,Radiation and a Nap

2010-08-03T13:43:00.001-07:00

Today I started round 3 of chemo and 6 weeks of radiation. As always day 1 of the chemo round was 3 hours long ( the others are an hour) and I got to do the IV pole dance again although today I didn't have any partners so it was a solo act. As soon as I finished there we took off over to the cancer center at the hospital for radiation. They were backed up so what should have been 15 minutes took about 45. No big deal, they have a very nice waiting room.

I know I mentioned that I was supposed to get my tattoos today but I didn't because they were running behind ( translation , in 5 minutes it's lunch time). So we'll do that tomorrow , or so they say.

I never realized that having cancer could cause such bathing issues. I' m person who loves her showers and baths and since they've marked me for radiation and put these little plastic stickers on me I've had to just "rinse" because there are magic marker marks that need to stay there too. I've been afraid to take a nice bubble bath because I have this fear of seeing the little plastic things floating by. There are only 2 that would actually be submerged but for all I know those are the most important 2.

Then today they put in the port for the chemo ( under that huge mound of gauze), that stays in all 3 days, it's in the back of my left hand. I can't get that wet either ( note Eeyore watch, I love Eeyore). The last 2 times I used a glove from some hair coloring I had since I don't have any hair to color right now but I'm out of those. I'll ask for a couple of gloves at chemo tomorrow. So I guess tomorrow morning I'm just gonna "rinse" with my left hand sticking out of the shower curtain. Hmm maybe there's another old box of hair color in that cabinet.

When I got home I had some lunch ( I try to eat decent meals before the chemo gets around to turning my stomach upside down) and then it was nap time. I remember how Chris used to fight nap time when he was little, eventually I gave up forcing the issue and I'd inevitably find him sleeping someplace like on the living room floor. I, on the other hand, have come to like nap time because it literally gets me through the day. If I didn't come up here to my room and stretch out in the air conditioning I'd probably just fall asleep in a chair someplace and wake up a sore mess. Pretty soon I'll have to tell my grandson Rex that nap time is a good thing. Maybe he'll listen to his crazy grandma :).

Anyway, day 1 of radiation done, only 30 something more to go, hopefully I'll have my tattoos before it's over so I can really take a shower!

The Calm Before the Storm

2010-07-28T20:11:00.000-07:00

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'

2010-07-22T12:28:00.000-07:00

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!

2010-07-19T12:26:00.000-07:00

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!

2010-07-15T13:28:00.000-07:00

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

2010-07-12T13:24:00.000-07:00

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!

2010-07-09T17:06:00.000-07:00

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

2010-07-07T14:24:00.000-07:00

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

2010-07-05T13:17:00.000-07:00

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

2010-07-02T12:44:00.000-07:00

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.

An Almost "Normal" Day

2010-06-30T13:34:00.000-07:00

Sometimes things creep up on you when you're not paying attention, or when you don't know what to expect. Today was one of those days.

First I have to say that the weather was made for me today, about 65 degrees, no humidity, I was able to walk outside without feeling like I needed oxygen.

My partner in crime Larry and I took my mother grocery shopping. This is an event because she loves to shop and at 84 is in no shape to rush so lots of time is needed to navigate every aisle of the store once and maybe twice. I haven't gone on the last couple of expeditions because I wasn't feeling well enough. Today I felt OK so I figured what the heck, Larry can always bring me home if I get shaky, I'll go along for the ride. So we dropped Mom off at the cart corral and went to park the car. We browsed through a couple of other stores at the shopping center and then headed to the grocery store to meet up with Mom.

As we were walking I noticed that I wasn't out of breath like I have been when I had to walk more than 100 feet inside or out. This was a very nice surprise, I mentioned it to Larry and he said he'd noticed. Very Cool! So this made me take a quick inventory of symptoms and I realized that the nasty ,nagging cough that has been with me all day every day since at least April has all but stopped. Very , very cool!

Now I don't know why this is, my guess would be the chemo is doing it's thing and the tumor isn't taking up as much space in my chest as it was and giving me more room to breathe. Whatever it is I'm happy.

Reality tells me that I still have tough times to come and there will be chemo and radiation side effects in the future but today was as close to normal as I've felt in a really long time and I'm loving it!

Weather, Naps and Music

2010-06-29T08:14:00.000-07:00

I wish it was fall or winter. This probably dosen't surprise some of you who know summer and heat have never been favorites of mine but this year I especially wish summer was over. It's been really humid this year and this makes it diffficult for me to breathe. The Dr. says stay in the AC which is fine except that my old house dosen't have central air so I spend the majority of time in my bedroon because I have AC there. Thank goodness I also have a computer and TV there, it's kind of like being back in college and living in a dorm room...not necessarily a bad thing but so far I haven't found the "party floor", this is a very dull school. This week we're going to put an air conditioner in the sewing/guest room so I can at least go sew when I want to. This should help fill my time between naps.

I don't know about you but naps used to make me feel guilty. Sleeping during the day when you could be doing something productive was frowned upon when I was growing up, naps were for children not grown ups. Well this grown up has learned the art of napping, not because I want to but because I have no choice. The cancer/chemo combination teams up on me and I have no choice but to lie down before I fall down. But, you know what? I like it, I like just being able to chill out for an hour or so, recharge my batteries and then carry on, and the best part is, these days no guilt! So those of you out there who don't nap for whatever reason...try it you might like it!

Who want's to help me put together a play list of "feel good" songs for my iPod? You do? Oh I knew you would. I want to make a play list that I can listen to when I'm at chemo or just need a lift and I want all of your input on what songs make you happy ( no Bobby McFerrin please). You can post them at the bottom here or email them to me and when I get a list I'll put it here incase anyone else would like it.

So I'll give us a start, I pick " What a Wonderful World" Louis Armstrong version. OK guys show me what ya got !

Some silly nutrition and TGIF

2010-06-25T10:56:00.000-07:00

So when I met with the radiologist this week first I had a meeting with one of his nurses. His name was Frank ( I think) could have been Fred, anyway he was explaining about how radiation works and what it is and pretty much giving me the standard speech. Then he got to the part about nutrition and making sure you have enough calories in your diet and I just started to laugh. He looks up at me like I'm crazy and I say " Frank, (or Fred) you are the first medical person (or for that matter any person) who has ever cautioned me about not getting enough to eat." Now yes I understand about good nutrition, especially while undergoing cancer treatment but hey in 55 years no one has ever said "we need to make sure you eat enough" so for me it was a little personal joke :). Fred (or Frank) got it too and we had a nice laugh. BTW chemo does make things taste different and I find I have less tolerance for really sweet things but bring on the salt! Thankfully there is such a thing as semi-sweet chocolate :)
This has been an interesting week for me. Good news about no wandering cancer, productive meeting with the radiologist, actually having some treatment plans in place. Getting shot with radioactive stuff not once but twice ( different test yesterday). I also experienced a new side effect that I think comes from the medicine they give you to keep your blood counts normal. This is not a fun side effect, it feels like someone is squeezing the muscles in your back and then twisting them. This wasn't something I was prepared for or had read about so when it hit at 3am ( as these things tend to do) I'll admit I was a bit freaked out. Some tylenol, a heathing pad and a good self talking to calmed things down some but this nasty bit of business has been with me for a couple of days now and I'm ready for it to move along. A woman I know who is a cancer survivor told me to always remember there are good days and not so good days but no bad days. I'd have to agree, a bad day would be having this nasty disease and not being able to do anything for it. So, if some medicine is going to make me have some not so good days in order to make me have all kinds of great days down the road, I'll take the tylenol, use the heating pad and sleep it through.
So here we are at Friday, I'm oficially not working while I undergo treatment so you might think I wouldn't care if it's Friday or not. Well I do because that means I get 2 days of not being stuck by anyone, injected with anything and no rides on the scanning machines that I've come to know so well. Yesterday after the second test I mentioned to someone in the cancer center waiting room that fighting cancer can be a full time job, she agreed.

My New Favorite "L" Word

2010-06-22T13:48:00.000-07:00

I decided to add a nice double rainbow here today because, rainbows are a sign of hope and I got a bunch of that today!

So, today I went to see the radiologist. I really didn't expect much because I didn't think he'd have the test results he needed to help me figure out what's next. Turns out I was wrong. I need to back up a minute or month or so and explain that the kind of cancer I have ( small cell lung cancer) isn't "staged" like other cancers...of course it isn't, I have it don't I? Most cancers are staged from 1-4, 1 being very treatable and 4 being not so good. Well my cancer only has two stages, limited and extensive. Limited meaning the cancer cells have stayed where they started and not messed with anything else and extensive being they all got on the train and took a ride around your body. The bone scan I had yesterday was to see if we had any rail riders in our midst and I found out today I DON'T. This means my small cell cancer is LIMITED and this is a very good thing.

The only kind of "down " thing that I learned is that this tumor is very big, something like 11 inches long and about 2 inches wide so they want to do more chemo to shrink it as much as possible before they start zapping it with radiation. I was told that radiation can't differentiate between good and bad cells and they'll have to "zap" some lung to get to the tumor so the smaller the tumor the less lung tissue I end up losing. Works for me.

So I will do another round of chemo and then some scans and then we'll start radiation in July, 5 days a week for 6 weeks. I'll have chemo at that time too. ( Make note I may be crankier than usual at this time).

I'm very glad to finally have to answers to the questions I've been waiting for and I have to believe that all of your good karma and prayer and positive thinking helped make this journey this far. So thanks for helping me work on kicking some cancer butt !

Coming soon, the nutrition speech , hopefully a pic of my new favorite t-shirt and who knows what else :)

Thank You Funny Technician !

2010-06-21T12:44:00.000-07:00

So today I had a bone scan, apparently this involves making one's self radioactive for a couple of days...who knew?
Anyway, I spent way too much time out of the A/C yesterday and when I do that I pay the price because my asthma/ allergies really act up ( they were saying at the Dr's office today this has been one of the worst allergy seasons on record, figures) and add to that a touch of tumor and breathing can be a chore. So this AM breathing was kind of like inhaling soup and I wasn't sure what I should take if anything because of the chemo...let's just say I went a bit batshit crazy which only makes things worse....fight or flight and all of that.
So I had to go get "nuked" and I was feeling a little shaky, the technician takes me into the room and she asks which arm, looks for a vein and we're just sort of chatting. So I say , pick which ever spot is good for you because I'm sure you know what you're doing and she says well you're only #2 today and the first one didn't go so well and then she smiles....I thought OMG a tech with a sense of humor I love this woman! So she shoots me up with the glowing stuff and then I have to come back in 2 hours for the actual test.
In the meantime I go to my regular Dr. to beg for something so I can breathe and he gives me a nice shot and says come back Thursday and he did answer my questions about what I could take and not take..so I was circling for a landing when I got back to the bone scan.
So an actual bone scan involves lying still for a long time while the machine does the work, this is perfect for me! Again the tech was just so laid back and I'm sure she has this routine down pat ( I'm here all weekend, try the veal) but hey it was new to me and much appreciated. At one point the machine came down and rested on my chest and she said "you're going to feel the machine touching you, don't worry if I hear anything crack I'll ease up" again the smile..she also told me not to go to Canada in the next couple of days because with the radioactive stuff in me they wouldn't let me back into the USA...true? I have no clue, but it was kinda funny.
Anway thank you body scan lady whoever you are, I appreciate that you recognized a crazy woman and helped to make everything better.

A Little Vision Late at Night

2010-06-19T10:25:00.000-07:00

This thing in the picture is a vision board. It's a tool some people use when they want to direct their thoughts in a certain direction or just to help make things clearer. I put this board together right after my diagnosis. I'm sure it looks totally random to anyone but me, but the main theme is down at the bottom right. " Keep Calm and Carry On." This is something I need to remind myself daily, sometimes more than others but everyday.

Last night I got to experience the first of some side effects of the chemo. I won't go into detail but let's just say they could be worse and they are manageable and once I got that into my little pea brain I was alot better. Anyway of course this is me, and if I'm going to get a side effect it's NOT going to be on the list of 1000 possible side effects . What was happening made sense to me but I couldn't find this particular sympton anywhere, so I decided to " Keep Calm and Carry On" until this AM and see how things were.

Well I still had the symptom this AM but I made it through the night without detriment so I figured I was OK. To be on the safe side I decided to call the oncologist's office (I know it's Saturday) and just ask if this was something they'd dealt with before and if there was anything I should be doing.

Well apparently the oncologist's office dosen't deal with patients on the weekend as I was instructed to call my primary care physician if I had any problems and if I was running a temperature to go to the ER. So I called my family doc and sure enough it is a side effect of the chemo and he explained it all to me and told me not to worry it was OK and to call him again if I needed him this weekend and to check in with him on Monday to let him know how it was going. Now that's a Dr.!

I suppose I could rant now about the oncologist and them not having any coverage on the weekends but why waste my time? It's their practice they can do what they want and I guess when you're the only game in town you can really do what you want.

Besides, I'm going to follow my plan of Keep Calm and Carry On.

Things I've Learned and Other Stuff

2010-06-17T12:12:00.000-07:00

So YAY I finished my first round of chemo today , gee seems like just the day before yesterday I started it...oh it was. So far this is how it's gone: go to chemo, run a brief errand or two ( post office, quick stop to pick up an RX), home, lunch, collapse until dinner time, have dinner, manage to stay awake for a few hours, pass out until about 4 am then snooze, watch TV, whatever until it's time to get up and do it again.
I've also learned some new terms this week like "chemo brain", I have experienced this several times, it's when the word or thought is right there in your head and it's not coming out, or maybe it's a bit confused and you can't put it all together quickly enough to make sense. I'm told this is pretty common and although frustrating should pass after chemo.
Of course there are all those medical terms, names of scans and names of chemo drugs and all sorts of terms that unless you're a medical student or a cancer patient you'll probably blessedly have no need for.
But my new favorite term, obviously generated by an insurance company employee with an odd sense of humor is...are you ready? Cranial Prosthesis , new skull part maybe? Well almost..a cranial prosthesis is a darn WIG! They tell me that I have a 98% of losing my hair with the type of chemo I'm on...I'm OK with that. In the hair/life thing, life wins hands down. Anway someone said see if your insurance will cover a wig, so I started looking and my secondary insurance certainly will cover a cranial prosthesis. I read the literature and it said to buy your CP before all your hair falls out so you can match color better if you want to and you can get it styled so you're ready to go when the inevitable happens. So this AM I bought my very first CP, I'm not sure how much I'll wear it, probably just when I'm out and about and it's not 85 degrees, but I think it's a good thing to have just in case I happen to buy the 10,000th gallon of ice cream at the local Stewart's Shop and have to be on TV(it could happen). I think the reason I really wanted one was so I could actually say that I own a cranial prosthesis, hey it sounds like something smart, maybe people will think I had a brain implant to overcome the effects of "chemo brain".

Shall We Dance?

2010-06-15T17:31:00.000-07:00

Today was my first day of chemo, at 8:00am about 8 of us and some of our support people ambled into the chemo room and took our places in the lounge chairs that line 3 of the 4 walls. The majority of attendees were older men, many accompanied by their wives.

The chemo techs are all very efficient and kind and they began hooking us up to our various cocktails of cancer killers. I sat there and looked around the room and thought if they just brought in a counselor we could have a support group too. I've always thought of my health issues as kind of a private matter to be shared with people I choose, not here, here we are all members of the same club. I think that's why people bring other folks with them to sort of be a buffer from the other people in the room. Not that they probably aren't very nice people and maybe I'll get to know one or two over time but for a first day it was kind of overwhelming.

Anyway there are different protocols for administering these drugs and mine ; along with 3 of the older gentlemen included an intravenous does of Lasix ( a fluid reducing drug; translation you run to the bathroom ALOT). And so began the dance of the IV poles to the one bathroom in the chemo room. It was a masterpiece to behold, each one of us in turn taking a sweep across the floor to the restroom and back to our assigned place. I of course got the IV pole with the "bad shopping cart wheels" I think they probably give this to the newbies to see how well we can cope with not only the 'dance " but a bad partner. This whole exercise also brought back memories of trying to quietly remove myself from rooms to use the facilities only to have some wiseass at a party yell " we know where' you're going" .

But hey I survived, I survived 2 different medications, the dance of the IV poles and 4 1/2 hours in a lounge chair in the chemo room....OK so I came home and passed out for a good while but I'm OK. No nausea yet and hopefully never, just bone weary fatigue...I can deal with that. Tomorrow I go back just for 1 drug, about 1 hour and then I can rest.

Stay tuned for my brief adventure into insurance company lingo.

Let The Games Begin

2010-06-14T09:05:00.001-07:00

Tomorrow I go for my first chemotherapy appointment. I have to be there at 8am, that alone is enough to make me cranky. Anyway I was trying to figure out what to bring with me, my iPod I guess and a book to read, I could bring my laptop but I don't know if I can get a outside connection. Maybe I need to invest in a handheld video game, maybe not. I have tetris on my phone if I could figure out which buttons do what.

Up until now the only experience I had with chemo was when my late crazy boyfriend was going to Syracuse once a week. He was treated at the Regional Oncology Center with is relatively new and apparently very well funded. There each patient has his or her own cubicle and their own TV, there were nurses and volunteers with warm blankets and juice and cookies and all in all it was a well appointed atmosphere to spend a few hours in. Here as far as I can tell, there's a room with alot of lounge type chairs, a ( as in 1) TV and I wasn't there long enough to scope out cookies or warm blankets. Now mind you I don't think this has any impact on the level of care patients receive from the staff and as a matter of fact my little corner of the world is probably a bit more personal and less institutional but the other place sure was nice. Kinda like the difference between the Motel 6 and the Marriott, but hey the Marriott never left the light on for me. I've been reading alot about cancer treatment and visualization so I've decided I'm going to think of the chemo like a pacman gobbling up all the cancer cells....probably nothing someone hasn't thought of before but it seems to work for me it was that or Hungry Hungry Hippos and that's too darn noisy for me. So I'll let you all know how it goes tomorrow, hopefully a totally uneventful experience that somehow involves cookies.

Let It Be

2010-06-12T22:10:00.000-07:00

Those of you who have been following along know that yesterday I not only met my oncologist for the first time and decided on a course of treatment, but I got to spend some time with my ex-husband who I haven't even spoken to since 1997 ( email is a wonderful thing) and his partner who obviously I'd never met.

Our divorce wasn't the easiest in the world but it wasn't the worst either. Especially when I ended up getting what I wanted :). My contention had always been the relationship between Chris and his Dad. As the years have passed they have managed to get things together and I'm happy with that.

Honestly it was probably a great day to see Scot again after all these years because frankly I had so much on my mind about the oncologist appointment that I really didn't even have time to consider what it would be like to see him again.

After I went to the Dr., Chris and I had lunch and then I went back to work to finish up a grant that was due. When I got home Chris , Jenny, the baby and Scot and Kenny were all just coming in from an outing. It was strange to see him in the house that we had lived in after all these years, but then again not so strange. I met Kenny who seems to be a very nice person full of happiness and humor and everything was OK.

Maybe I'm mellowing but or maybe it's because I've literally been hit with life and mortaility right between the eyes lately. March 31 my beautiful grandson is born, May 26 " Sue you 've got cancer" it's been an interesting couple of months for sure.

I think everyone has their version of the serenity prayer ( or should) or at least a way of stating their coping options. One I hear alot is " It is what it is" well that may be but in my head that sort of says : 'OK there's nothing we can do, it is what it is, we'll move on" it dosen't really show any kind of acceptance to me. These days I prefer " Let It Be" maybe it's the old hippie in me or maybe right now there are things I have to "let be' if only for a moment in order to move to the next adventure.

So I "Let Be" my past with Scot and found it was actually kind of nice to have someone to share childhood memories of Chris with, especially when comparing him to our beautiful Grandson. Facing what I'm facing, I don't know how long I'll be around to be the 'memory keeper' although I'd like to think it'll be a good long time.

So, it was a day to "Let It Be". Let it be time to get this cancer under control, let it be time to rest old hurts and let it be time to just be in the moment and enjoy life.

OK so I got introspective for awhile, I promise I'll make it up to you next time , one blog without a good laugh is enough!

Oy what a day!

2010-06-12T02:33:00.000-07:00

Yesterday was one of those days that takes about 3 days to "wind down" from. Not only did I make my first trip to the oncologist but I spend some time with my ex-husband who I hadn't even spoken to since 1997 and his partner ( that's another blog another day, or maybe later). Get coffee this could take awhile.

Anyway Chris and Jenny came up and Chris came with me to the Dr. and Jenny and Rex visited with Great Grandma while we were there.

After some preliminary blood drawing by the wonderwoman (30 seconds 2 vials of blood didn't feel a thing). We met with the Dr's PA who told us about my kind of cancer and asked alot of questions and did a little exam. She was nice and took her time and answered any questions we had, then she went to get the Dr.

I can't say this guy is Mr. Personality but he's direct and he talks in people friendly terms and he says what he thinks and I guess aside from the fact that I don't think I'll be sharing cookies and tea with him anytime soon he's a good guy.

So here's the deal, I have small cell cancer which is very "active" and likes to travel and grow at a pretty good clip. The good news is it's very receptive to chemo therapy and radiation. Which for me is very good news because the tumor ( damn I hate that word, I need to call it something else) isn't operable, meaning they can't cut it out. Now that dosen't mean it's not cureable it just means it's in a spot that's not "cutoutable". So the Dr said if I was going to get a combination of type of cancer and place for it to be this was an OK combo because it does respond well to chemo. He said IF the cancer hasn't spread , (we don't know that yet) the cure rate is 70-80% so that's pretty darn good. If it has, no way to tell until we know where it decided to meander to. So I will be having a brain scan ( long overdue just for practical matters ) and a bone scan in the next couple of weeks.

Next we discussed getting a second opinion, he said I was free to do that and he could reccomend someone but he was concerned that this would be another 2-3 weeks down the road before I would start treatment and if it was him he wouldn't wait that long because of the "frisky" nature of this cancer. That dosen't mean once I start treatment I can't get another opinion, he was just concerned about time being wasted in the meantime. So, that being said ,I start chemo therapy on Tuesday, I'll go 3 days a week and then take 2 weeks off and do that 4 times. I have researched and this seems to be the beginning standard of care for this type of cancer. Then after the scans are in, IF there is no spreading I will start radiation for 6 weeks. If the cancer has spread then no radiation because they won't be able to pinpoint places to zap. So as much as 6 weeks of radiation dosen't sound fun I have to hope that that's what comes next because that's my quickest way to getting rid of this.

Thank goodness I had Chris with me to take notes and ask questions! We discussed it and interestingly while I felt I might be rushed into treatment Chris was in total agreement with the Dr. I mentioned wanting to check anyway with the Dr. in Syracuse and he said I should go ahead if I could but that I should start treatment anyway here and I guess I can't fight with that. When I mentioned I thought I was being rushed the answer was , yes they're rushing to save your life..can't fight with that.

So I hope that answers some questons for now, stay tuned for the meeting with the ex ( interesting) and the difference between the Regional Oncology Center in Syracuse and the Drs. office in Watertown.

Once More With Feeling

2010-06-04T12:04:00.000-07:00

This past week I've had pneumonia again, not sure if this is a cause and effect thing but I know it's a pain in the butt. Anyway I'm back on the steroids and the antibiotics, blah, blah, blah.

I was scheduled for a pulmonary function test on Monday, my GP told me to cancel it because obviously if I have pneumonia it's not going to be accurate. So I go to the pulmonologist's office because I have some paperwork I need from them anyway. I tell the lady behind the desk who I am and that I need to cancel this test and why...she looks me up on the computer and says well we need to wait 6 to 8 weeks then to make sure the pneumonia is gone. I said, probably in 6 to 8 weeks I'll be having chemo ( I don't know this for sure but it seems likely). Well you'd have thought I just spit in her coffee, big eyeroll, heavy sigh she turns back to the computer screen. I said well you can talk to the Dr. and just give me a call if that's easier for you, I get the look of death and she hands me an appointment card for June 14th, this isn't 6 weeks , this isn't even 2 weeks but OK I'm not fighting with her.

Now I'm thinking oh crap I have to ask Miss Congeniality for these test results so I can send them to my secondary insurer. So I say "May I have a copy of my needle biopsy results please, I need to send them to my insurance company." She says " You have to fill out this request and sign this release form and we'll call you when they're ready" Call me when they're ready? are we having them recreated in calligraphy by monks in the basement? Can't we just open my file take the ONE page out and copy it? Apparently not, Miss Congeniality wins round 2.

I have to say that I've been to quite a few medical offices in the past months and this one takes the cake for hiring creatures from the dark planet to work there. I went there for a blood test before the biposy and they sent me into the back with a young woman who asked me like they always do which was the best arm to find a vein in and then used the other arm...poked around awhile ( did that just make you shiver?) and declared she couldn't find a vein and I should probably go to the lab across the parking lot....I'd have done that first if the mistress of the dark at the front desk had told me to.

Anyway I got the OK to go back to work on Monday so that's good news and maybe if I'm really, really lucky I'll get that call from the document recreation department of the pulmonary associates soon.

Put on Your Big Girl Panties and Deal With It

2010-06-01T07:19:00.000-07:00

Since my diagnosis just under a week ago (wow was it only 6 days ago) I've been dancing around the whole concept of me having cancer. Oh on an intellectual level I know it's there but on an emotional level it's one of those things that creeps up on you in the middle of the night when there's nothing but bad TV to fill the space that you like to keep filled so these unbidden thoughts don't sneak in. I think a week is probably enough time to let things sink in, now it's time to do something. Honestly I'm not sure what I'm going to do but it'll be something I can guarantee that. It seems I've already read the good, bad and ugly about my kind of cancer. I bought a book about 50 things you should do if you have cancer, maybe I'll do a few of those. One of them is drink alot of water, I can do that. One I particularly do like is take time when making treatment decisions. This gentleman says that although cancer patients shouldn't waste alot of time when it comes to making treatment decisions it's also not a cut artery that has to be dealt with immediately. Makes sense to me. So the time has come for me to put on my big girl panties, deal with it and have a glass of water. OK so that dosen't sound very proactive but it's all I've got for now.

It's a Paperwork World

2010-05-28T10:22:00.000-07:00

I thought this blog was getting a bit visually dull so I figured I'd add a pic of some of my favorite flowers..Black Eyed Susans. Aside from the obvious I like them because they grow wild, don't need to be cultivated and usually show up in unexpected places to bring a smile to someone's face.

I got more paper work to fill out in the mail today this time from the oncologist's office. Funny they ask the same questions as every other office I've been to in the past month or so. HIPPA not withstanding couldn't I just sign something that would let them send the vital information about how my grandmother died and what I'm allergic to? It's gotten so bad that I've begun carrying a list of the medications I take and their dosages in my purse, oh you need that info? I have it right here. My fear is that someday I'm going to get pulled over for speeding and I'm going to give him my license, registration and medication list.

So far I've given all of these people alot more information than they've given me, including tissue samples. I've never been a patient person and this test, wait, see another Dr. thing is slowly making me crazier than usual. Sometimes I feel like it's some kind of medical pass the buck and at the end I'm going to be sent to see some poor soul in the basement of the medical arts building who's only job is to deliver news that people don't want to hear. This person will be behind bulletproof glass of course and the information won't be quite clear because the microphone from the booth will have some static so it will end up something like this " Ms. Kirkegaard, your tests are all in and they show that your tumor is &^%$^*&^-malignant" then the shade goes down over the booth and you're left standing there thinking ( you may be yelling) What?? malignant or not? "come on I need to know! That's when a piece pf paper comes out of the booth like those fortune teller machines at the arcade when we were kids that says " Your next appointment is with Dr.Nextinline in a month, have a nice day."

What's the rush?

2010-05-26T11:47:00.000-07:00

I just got a call about my oncologist's office, appointment, June 11....apparently time is not of the essence to anyone but me and my family and friends. Although, considering there is only one oncologist in Watertown this could be a rushed appointment. The first thing that ran through my cup half empty(dominant personality) mind was " maybe there's nothing they think they can do anyway so why rush" then the cup half full (submissive personality) said " well maybe there's no rush because it's not as bad as all that " Or maybe and most likely, he's the only Dr. in town and he's booked solid. Still, the waiting is no fun. On a lighter note, the folks I work with all got together and gave me a gift certificate for a one hour massage, I've never had a massage but it sounds wonderful to me. Maybe she can work out some of the kinks that I know are caused by stress. It's not comfortable to walk around with your shoulders up around your ears all day, trust me I know this because it's what I do when I get stressed. Chris, Jenny and the baby are coming up tonight for dinner, seeing that baby always makes everything OK for awhile at least.

The Results are In

2010-05-26T07:44:00.000-07:00

So the test results are in and yes I do have cancer. Unfortunately I don't have a whole lot of other information at this point because I haven't seen the oncologist yet, the pulmonologist gave me the biopsy results and then basically said I'd have to wait til I saw the oncologist to find out the extent and prognosis. I know it is small cell cancer which if you were going to pick a cancer from the drop down menu of such things would and should not be your (or my) choice. So now I just have to pray that it is localized and hasn't send any mean little cancer cells to other parts of my body besides my mediasteinum (between my lungs). I'm sure once I talk to the local Dr. I'll be wanting at least a second opinion as to treatment and then we'll start the battle.

I figured I'd start a blog because I can get information out to anyone who's interested quickly and maybe along the line I can learn and share with others.

So, that's where we are on May 26, 2010.

Thanks to all of you who have send good wishes and prayers along this part of the journey, keep them coming, I can feel the good vibrations and they feel good.