Tuesday, June 28, 2011

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.


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"

Wednesday, June 8, 2011

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.

Saturday, May 28, 2011

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!!

Saturday, May 7, 2011

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 :)

Thursday, May 5, 2011

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 :)

Sunday, May 1, 2011

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.

Thursday, April 28, 2011

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!