Keep Calm and Carry On

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.

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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

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

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

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!

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!!