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"

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.

Drs. Drive Me Crazy!!

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.

Results Finally

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

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.

Emmy where are you?

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

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.

Time Flies

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 !

This and That

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 !

Sweet Tea and Chemo Brain

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 :)

Chemo,Radiation and a Nap

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!

What a Day!

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

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

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

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

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

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

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

Round Two Complete!

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

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

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

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

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

An Almost "Normal" Day

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!

Some silly nutrition and TGIF

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

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 !

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

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.

Shall We Dance?

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

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.