Get 'Er Done!

Remember the book I was making for my niece for the future? Well, it's all done now. From birth to age 21, there are cards and photos and stickers for every year. I spent a great deal of time laying out how I wanted the book to look, and writing cards and looking through the photos we have already; making space for photos that will come in the future.  I like the book. It's simple and sweet and full of love.  And it's one more thing off my get 'er done list that is... well... done.

What is a Get 'er Done list, you ask? It's simple. There are things that you do when you deal with a death in the family. Things like distributing the loved ones belongings, cleaning out closets, going through years of accumulated "stuff and things"... all tasks that take time and (in my experience) can lead to great big falling outs in families as people argue over grandma's china, or great aunt Susie's jewelry. It's not the big stuff you write up in your will that cause problems... it's the little things. So, for people like me who know the end is coming sooner rather than later, the wise start taking care of this stuff long before the end is too close.

The funny thing is, I read other writers frequently and one that I read did a piece about the myths of dealing with the terminal disease. A few of those myths dealt with the Get 'er Done type stuff. The writer said we "think" we will do those things that need to be done, but we don't, choosing instead to do anything but deal with what must be done. And yet, I am doing these things.


For example, I had a large collection of dolls. I loved them all. I could look at each doll and tell you where it came from, who gave it to me and why it was special. There were little dolls that my Grandpa Hartman gave me when he came back from trips overseas. There were rows and rows of red headed brown eyed dolls my mom had given me. There were antique dolls my wife had given me over the years. There were Barbies and a Spice Girl and even Audrey Hepburn. Those dolls are now with my three nieces. I split the collection three ways and gave them to the girls parents to give to the girls for me. Next to go are my music boxes that my wife has bought me.

I have a set of dishes from my mom that is going back to her, along with family photos so that she can decide who should get them next. My own photos of my childhood will go to my brothers. My jewelry is divided up in envelopes with an explanation of what each piece is and who it goes to. These are being mailed out soon. The only pieces I am keeping are the necklace Michele had made for me, two pairs of earrings she gave me and my wedding ring (Plus the cheap costume stuff that my niece Ava can play with in her dress-up chest).

We went through our photos and I picked the pictures I want for my memorial. Pictures of me smiling, laughing and of course, sticking my tongue out. I am making my own memorial slide show.  Who better to decide how I want to be remembered than me? Who can tell the story of my life better? What better message to leave than one I do myself?

I went through my closets and dressers and got down to the basics. Just what I wear, nothing else. Six bags of clothes went to Goodwill.  I am slowly going through all the boxes and put up items and getting rid of anything and everything that is not necessary.

All these things give me a feeling of relief. A shedding of my shell. A sloughing off of the excess. I am getting streamlined, less weighted down.


As I often say... I am not being morbid or trying to be alarmist.. I am just a realist who knows that if I want something done the way I want it done, then I need to do it myself. Why put the burden on my wife and mom who will have enough to deal with when the time comes when it is just as easy to do it now? On the plus side, I have enjoyed going through things and remembering special times with my wife as I go through stuff. Even the great closet purge was fun as we talked about how we have one sweater that has been with us for 20 years and I STILL will not get rid of it ( Hey! It's a Ralph Lauren sweater and that thing was well worth the money! It still looks just as good today as it did years ago)

And the side effects start...

Five doses into the Tykerb/Xeloda combo and side effects are starting already. Today started out so good too... I got up, took my first batch of meds, waited an hour, ate some oatmeal, took the second round, played with the dog some. Then Michele and I cleaned up the front room. That was fun. We rearranged furniture, separated out the trash from the donations (Goodwill and I are seeing a great deal of each other these days) and finally found the pattern to my cross-stitch work that I had been looking for. Next was a short nap and dinner. Of course it was too good to be true... an hour after the third medication dose, my tummy turned wonky. I tried to ignore it, but when a burp almost became a repeat of dinner, I knew it was time. My darling wife went to the store and brought back sherbet, ginger ale and other tummy settlers.
The funny part... here I am getting mad at myself because I was sick. Yep, I was being a pansy. No, not .really... but I did feel like I was a pansy. I mean really... it's only been 2 1/2 days. I can't seriously be sick already. But apparently I can.

Which leads me to today's thought.  Don't be so hard on yourself. No one expects you to be perfect... except maybe you.

Quick update

Well, the news here is.... meh. The Evil Overlord C has made a base in two lymph nodes and has been expanding his base camp. The size has increased, both in the lymph nodes and in the lung. My amazing doctor has decided that it is time to give Herceptin a rest for a while. Since the increase in size means the drug combo I am on right now is not working, and my heart function is down to 55%, we are on to the next step- Tykerb and Xeloda.  I will keep you posted on how this turns out.

A blessed new year

Gosh... a whole new year!  I can't believe how fast last year went by. I think every year just passes in a blur as I get older. I haven't been online much lately because my computer decided that since it was a new year... It needed a vacation. But Michele fixed it and here I am again.

Some of my 50 state magnets!

I wanted to start the year off right by saying how amazing my friends and family are. Yes... I know... I say that a lot, but seriously... I am probably the most blessed woman in the world. Let me start with the mail. I love mail. I love getting packages, even if it's just free samples of detergent. December brought me mail and more mail. Christmas cards after Christmas cards. Wedding invitations. Picture cards. A set of magnets from all 50 states. Every day I had something that made me smile. To all my friends... I don't know if you realize how much I cherished the cards with family photos. I loved the cute kids in jammies, the families dressed in their christmas-y best, the poems, the stories and the smiles. I loved the pretty cards with little notes. Yes, it may seem corny, but it meant a great deal to me to know that I was thought of when those cards were written out. That someone smiled when they addressed that envelope and knew that I would smile when I opened my mail box. I even waited and collected them all for a night when I was off so I could sit and savor my cards while having a cocoa. And then I put them in my scrapbook to enjoy again later.  Oh... did I mention the presents? I got a surprise from my wonderful friend Marlinda and her staff at the beauty salon. See... they had a dieting bet going on and since no one won it... they sent the pot to me. Imagine my surprise to get a card with a check large enough to cover three months of Tykerb! I was in tears at how generous my friends are. And then a present from someone I didn't know... Magnets! A friend of mine Brooke (who I have mentioned before ) wanted to help me finish my magnet collection (read back a few posts... it's something I thought I would not get to do...but see how God works miracles?) and her brother sent me a set. And a customer gave me a lottery ticket. I won a dollar! (Don't hate!  you know you wish you had one!)

No... this isn't a plea for more mail (but hey! if the spirit moves you... I am accepting children's artwork for my fridge, pictures to go in my scrapbook and notes to read with my cocoa...no restrictions apply!). This is just an observation on how blessed I am.

So... this brings me to my big thought for the new year. So many times we all get hung up on what is wrong in our lives, we lose sight of the amazing parts of our lives. Every day we wake up (How Awesome!  Somewhere out there, someone did not wake up today... look how lucky you are!) and are surrounded by our family (Look at those faces who love you even when you look like Lyle Lovett and have breath that could be used as a weapon). We go out in the world to a job or stay home to do the job of raising our future (somewhere out there is someone who has no job or has never raised a family). We come home to our loved ones, spend time with our friends and... here's the best part... we get to do it all again tomorrow! 

You may wonder how I can think like this with what is going on here healthwise... but you know... until the Big C... I never realized that I am the luckiest woman in the world. But I do now.

Netflix and deep thought.

I love Netflix. I mean like really REALLY love it. I have spent more time watching full seasons of old shows when I don't feel well than anything else. One of the ones I watched recently was Law and Order: Criminal Intent. It was great having something to take my mind off anything and everything. And then came the episode I watched today. Today's episode was the one about the pharmacist who diluted cancer drugs to make money to support his image in the community and to meet his charity obligations to the church. The funny thing is, I notice that the disclaimer at the beginning of the show seemed different for this one. It said that it was based on an actual case!

Oh my Gosh!  Someone actually did this? So I had to look it up because at first I couldn't believe that it was true. After all... I manage a pharmacy and I know tons of pharmacists and I could not believe for a second that anyone in that profession could think up that crime, commit that crime or get away with it. Then I figured maybe the pharmacist only did it a couple of times and got caught. Imagine my surprise to discover that for nine years, an independent pharmacist who was licensed  to compound and dispense IV drugs had been diluting his medications of life saving drugs to make money. Not once or twice, but 98,000 times. Can you imagine? One of the drugs he did this to was one that I have taken (Taxol). Kinda scary. I can only imagine how those patients must have felt when the truth came out.

So, watching the episode and then looking up the actual case made me do a lot of thinking. First, what can make a person do something like this? Or for that matter, what makes anyone commit a crime against another living creature? Just look at the incidents that have happened in the past few weeks, and it's hard to understand exactly what goes wrong in a persons' head that makes them forget that others have feelings too? The pharmacist who did that justified himself by the rationale that the patients were dying anyway. Dying anyway...  And who knows what was wrong with the school shooter, or the man who set a fire so he could shoot first responders. What is going wrong with this world? It's like these people forgot that their victims were actual living humans.

Maybe... and this is just me thinking here... maybe it's because we are losing our connection to the world. I mean, for people who are as "connected" as we are, with our phones that update where we are and who we are with, and computers that ask us how are we feeling... seriously, we really aren't very connected at all. I'm not saying we are all wandering alone in cyber space, but honestly, how often do we have real physical contact with people outside our own homes? I do... but I also invite it. I seek out the people who look like they are touchers or huggers or bump-up-againsters. My day would not be complete without at least two or three hugs, a few arm pats and at least one curl tousling head rub. So I know I am being reminded daily that I am a part of the great family humanity. But how many people go through their days and weeks without touching and being touched? I know... not everyone likes having their personal space invaded, but isn't that one of the things that makes us human, that invasion of our space? Doesn't everyone need to be reminded sometimes that other people are real, that they are the same? Look out at the animal kingdom. They know that touch is an important part of being in a community. They groom each other. They play with each other. They scent each other ( Although I do draw the line at that... no one is going to spray urine on me and get away without being smacked). The point is... animals know that the way to establish ties is through contact. So maybe we need to be a little more conscious of other people and start trying to connect. Smile at a stranger. Don't be afraid of a little contact. Lets try to remind each other that we are all a part of this big family of humanity and maybe the world can change.

If you need a hug... come see me. I'll be at work dispensing hugs and smiles, free with every purchase.

I'm Gonna...

Ahhhh.... Big sigh.... Christmas in retail is finally over. I have made it through another full retail year and have not killed anyone, not even the lady who pitched a full fledged, toddler style, in your face tantrum because my pregnant assistant manager told her to "Have a nice Day, Ma'am."  ( Seriously... When you are twice the age of someone in the South... Expect to be called Ma'am or Sir... We call that manners)

So the new year is almost on us. I have been thinking about the whole resolution thing, and decided that I am not good at resolutions. I mean, unless it's something like "In the new year, I promise that I will change my mind frequently, get irritated at nothing sometimes and take at least one bath a month." Those are some resolutions I can keep. But as for big changes... I don't really know what I would change, or why. Mostly we make resolutions to change bad habits, or to improve our selves. But I would like to make some different resolutions. I think I'll call them the I'm Gonna List.

This Year I am gonna:

1. Throw a baseball. I may not hit anything that I meant to hit, but by Golly I am going to throw one!
2. Attempt to hit a ball with a bat. A baseball, a basketball, a soccer ball.... a Beach ball... something. I am using a bat to hit a ball and I will make it move!
3. Give flowers to a stranger.
4. Dance in public to something on the in store radio.
5. Sing loudly and most likely off key at least once a week someplace other than home or work.
6. Take more walks.
7. Use more crayons.
8. Eat more desserts.
9. Play in my yard. (No... not work in the yard... PLAY in the yard. I will mow in circles, rake up leaves in piles to jump in and probably play in the dirt.)
10. Laugh at least once a day until my stomach hurts.

That is a list of resolutions I think I can keep.

Time heals all wounds (and fades all scars)... Updated Mastectomy Photos

 Well, It's been a while since we last visited the world of Mastectomy scars, so I thought now would be a good time to have an update on what they look like. Remember, in February I had both breasts removed, then in March I had my little accident with the heating pad. Things are looking better...

The Waiting Game

Everyone likes games. Cards, board games, video games... we all enjoy different ones. But right now I am playing a game no one likes. The Waiting Game. It's fairly simple. Your imagination holds all the cards. One by one, it lays down a "What If?" card. Your goal is to look at the What if, think of an answer and (this is the hard part) whatever you do, DO NOT PICK UP THE CARD AND RUN WITH IT! I know... I know... it's hard not to do it, especially when some of the cards are so tempting.

First card down. No one has called about the MRI yet. What If...
Surely everything is okay. I mean, if it wasn't, they would have called by now, right? Or maybe there is something, but they want to see all of the scans before they make a decision. But that nurse was so chirpy and happy... she would have to be one sick woman to be that happy if she saw a big tumor, right? But supposedly they can't interpret those charts. But seriously... how can she do the test if she doesn't know what to look for, right? And she has to have seen a tumor before... right?
*Dropping the card. Looking at the dealer* You thought you had me didn't you? Tough... Next card.

Second card down. My heart check-up. What if...
Oh. This one is too easy to not pick up. The technician said I have beautiful insides. He even explained what I was seeing on the screen. I pointed out to him what I saw (an alien beating a drum, the middle of a peony, a man in a funny hat playing an upright piano, two angels upside down paying patty cake, an angry moth) and he laughed. My heartbeat.... it has a good rhythm and you can dance to it!
* HA! Triumphant grin at the dealer* You can do better than that.

Next Card. The PET scan. What if...
Hmmm.... The biggest question is obvious. What If the cancer is back? I hope it isn't, but I have to be prepared if it is. It could be. And it could be anywhere. Under my arms is so swollen from the Lymph-edema that I can't say for sure that something else isn't going on in that area. The muscles across my chest are so tight from surgery, not to mention work and stress, that it does have sharp shooting pains sometimes. And yeah, sometimes I think to myself that it might be the cancer coming back, that it might even now be growing on my chest wall, or burrowing into my skin, or creeping like a thief through my lymph system. But honestly... what happens next? Well... probably more chemo and radiation. Worst case scenario, chemo, radiation and more surgery. I might be bald again. I might spend more time with the toilet. I might get weak. It might hurt... oh wait... pain... hmmm... now that is something to think about. The last time around, it mostly itched and the pain was from the treatment. All those places they cut me, burned me, poked me and bruised me. The port scar. The biopsy scar. The mastectomy scars. The drainage tube scars. The sore throat from vomiting. The sore stomach. The sore hind end from the diarrhea. The pains from constipation. The muscle pains from the chemo. The countless needle pricks. The peeling skin.... Looking back, it was an awful lot to go through. But I can do it again the same way I did the first time. One day at a time. Of course, there is the fact that this time I am not starting from perfectly healthy except for the cancer. This time ( here the Evil Dealer grins at me), well, honey, This time you are already a little weaker, a little more easily worn out. This time you don't have anything easy to cut off. If they cut you again... it's going to be something much more dangerous.
*Slams down the card*

Final Card. What if it's already too far gone?

At this point, I know the Dealer is playing dirty. There is no way I am touching that card. I walk away from the game.

I win.

My first MRI

Today's adventure was my very first MRI. I don't remember much about it, because I read a little about what it is like and I decided that just for today, maybe taking a Xanax would be a good idea. You who read my posts know how much I don't like taking those pills, but rather than suffer claustrophobia, I decided one pill won't hurt.

So I went in my mismatched flannel jammies, with the green blanket and my bear. I wasn't allowed to take either of them in with me, so I left the bear on the counter in the room and they gave me a blanket of theirs. I lay down on the table and they put a bolster under my knees to make me comfy. Then they gave me earplugs, which I put in, and they started asking questions. Now, why do you give someone ear plugs and then question them? Anyhow... I told them which arm was okay to poke, lay back on the table and closed my eyes. I felt them put a strap on me. I felt two cushions moved onto my cheeks. I felt something move over my face. A nurse held my arm as they looked for a vein. That hurt. In fact, it hurt a lot. The table moved. There was a loud noise. The table seemed to vibrate. The noises changed sometimes. First a whirring, then a beeping, then a low pitch. The table moved again. I felt the nurses touching my arm. I remembered mumbling that maybe I should drink some water because that might help ( I don't know why I thought that would help, but who knows what goes through my drug addled brain. This is the woman who was mad because there were horses in the operating room and apparently I thought it was unsanitary) I opened my eyes and was looking through some sort of cage. I closed my eyes again. The nurse stopped poking my arm and poked my hand. It hurt. I whimpered. She rubbed my arm. I settled down. The table moved. The noise started again. Same as before. The table moved. I opened my eyes. All done.
I swear it took 10 minutes, but it was actually an hour. I slept through the MRI. 

This is what the MRI looks like. This is not me! I found this image on Google.

Check up time again

Meanwhile.... back in Cancerville.... It is time for the six month check-ups. Yep... This month I get an MRI, a PET scan, an echocardiogram and my first visit with a lymphedema specialist. Oh Joy! I'll keep y'all posted as I get the results. Pray for NED  (No Evidence Detected).

Everything... and the Kitchen Sink

It's been a long week. I tried to replace the faucet in the kitchen. I did pretty well... got the basin wrench positioned correctly, took the two side screws out, disconnected the cold water and then... came to a screeching halt. The hot water connector would not budge. Then, after much twisting, WD-40 and finally a few well chosen curse words, it turned. And turned. And turned.... and would not come apart. After an hour of twisting, turning, using multiple different tools... I gave up. I called a plumber. It took him 45 minutes to get the old one out and the new one in. I was so mad! But then... I had to laugh. Once again, the universe is telling me that while I might think I can do everything... there are some things that are still a little beyond me.

I had a lady in my store this week who just started chemo. She has lung cancer. She was telling me how hard this last week has been with losing her hair and crying. I hugged her and asked her to stop back by on Sunday. See... she was telling me how she hates how she looks and can't find anything to cover her head that makes her feel pretty. I went through my hats and scarves and came up with some light weight ones for her. So when she came in, I showed her how to tie a turban with a long scarf and gave her a bag of hats. It seemed like the thing to do. She left with a pretty pink turban on and a smile. It made my day.

I went shopping with Mom. It was an experience, I must say. I spent a while trying on clothes, discovering which outfits looked good on my new flat chest and which didn't. I bought some new hats. And then I had fun buying a strapless bra. Yep... I need a strapless bra for my wedding dress to put my foobs in. The ones from the mastectomy company are outrageous! So... I bought one on clearance in a random cup size and tried it when I got home. It looked pretty good, if I say so myself. Not that I plan to wear the foobs that often... but it's nice to have them if I need them. The most entertaining part of shopping... I opened the door without my shirt on and there was a woman standing outside the dressing room. I just smiled and said... MOM!!!

Today though, I realized that I am still disappointing myself. You ever catch yourself looking at someone you don't know and thinking the most terrible things? I mean, being critical of what they are wearing, or how they are acting, or even how they look. Well... I really wish I could stop doing this. I really hate this about myself. What right do I have to make any judgements about anyone else? For all I know, they could be the nicest person around, and here I am thinking some snide thought. Every time I catch myself doing it, I shake myself and make it a point to find something nicer to think about that person. So... I see the woman who reminds me of a People Of Wal-mart poster child and I stop myself... and I notice she has the most amazing eyes. Or the grumpy old man who is snapping at me to hurry up... he smells so good. And then I take that good thought and I hold it in my head and I smile at the person... and they smile back. Even the grumpy man. So,  I realize again that I can't change other people... but I can keep working on me, and maybe I can change. I would really like that.

very short update.

It's another beautiful day here and I am back to my old self... mostly. I changed the oil in the mower, cleaned the air filter and checked the spark plugs. Then I mowed the driveway. And after only an hour of being outside, I had to go sit down. I guess I am not quite as recovered as I thought... but then again, I did that after being at work since 730 this morning and only having a can of pears for breakfast/lunch. So maybe I shouldn't be too hard on myself.

I have really missed doing things like this, and it is so nice to be able to do them again. My yard is looking scruffy, so I see a big yard clean-up in my future. And I am really excited about it. I know I used to moan and complain about having to spend my off time doing yard work, or cleaning house, but my views on that have changed. It is a blessing to be well enough to go push a mower around 3/4 acre of yard. So what if I have to sit down more frequently. At least I can do it.

The other fun thing... I had three, yep three, crazy people in a row today. It is really hard for me not to laugh at them sometimes. I mean, seriously... why are you getting so worked up over something so small? But then I have to remind myself that for the person in front of me, this incident is probably the worst thing going on in their world right now, and I am grateful for that. If the worst thing in your world is not getting your way at a store, then you are a lucky person. Sometimes I wish I could tell them this, but I think that might not go over very well. Especially because I wouldn't be able to do it without laughing.

oh well... break is over... gotta go mow some lawn.

Life goes on...

Well, we are now about a month away from the wedding and I am doing what I can to make it as budget a wedding as possible and still have it be pretty and memorable. It's amazing what you can get at the dollar store and then fix up into something cute. I have to say, it is nice to think about something not cancer related for once.

Of course, I guess you can say that in a round-about way I do think about it all the time. I mean, while we were planning the ceremony, we purposely avoided anything that was too sentimental. I decided that we have had too much seriousness in the past year. There will be no sappy music, no mention of til death do us part (because that is just a little too close to home still), and definitely nothing that is going to make me cry. I have had enough of tears for the time being. What I want is a day to celebrate life and love and family and friends. In fact, lately I have tried to have a lot more time to enjoy all of those things.

Recently, we went out to our very first martini tasting. It was awesome!  We got to see friends we hadn't seen in a while, ate good food, got tipsy and then danced for the first time in ages. We went to a drive in movie with another couple a few weeks before that. Again... we ate good food, snuggled, laughed and had a great time. We went out to dinner at Sticky Fingers (some of the best darn ribs EVER!) with our friend Christina... laughed, had good food (I think that may be a thing with me... I love food) and enjoyed each others company. Life is going on...

That is a thing to think about... Life going on. Once again I am nothing but thankful that life continues, that I have wonderful friends who are as excited to spend time with me as I am with them. And while it may be in the back of all of our minds to wonder how long do we have, or how many more nights together will there be...we don't discuss it. However, I think we treasure each experience more because for once we realize there is a time limit that no one but God knows. I just wish I had known this sooner. I would have eaten more.

Getting in touch with the past

I don't know about any of you, but I am really feeling the need for family more every day. Funny how when you are a teen, you sort of push away from your family as you try to establish who you are. Then you hit your thirties and start to realize that a large part of who you are is where you come from. You look around and see that your great grandparents are mostly gone, your grandparents are slipping away and your parents are people who you are now old enough to appreciate as individuals, not just parents. Your brothers and sisters are no longer the people you fight with, but are now the people you turn to in times of joy and sorrow. Of course, that is just my personal experience. Maybe you are one of the lucky ones who kept up those relationships your whole life. Myself... I am working on it right now.

I spent yesterday scanning family photos for my wife. I borrowed the books from her uncle. As I was going through them with her, we realized that she doesn't know the names of many of the relatives pictured, even the names of her great grandparents. She has no stories associated with many of the people in the pictures. And it made me think about something my dad did when I was young. He sat down with my great grandmother Stanojevich and got her talking. She told stories about her mom and dad, her brothers and sisters and sang some songs in her native language. Unfortunately, it was too late to record most of my other great grandparents. Alzheimer's had taken my great grandfather, and senile dementia had the other two remaining great grandmothers.

So, this made me think about what we leave for our children and their children. What do we know about our older generation? What stories are we missing?  What can we do now to preserve that history? What makes this even harder is how fractured our families have become. Divorce, children born out of wedlock, deaths in the family... all these gaps in our connections make it hard to get the narrative of your family. I wonder if I am the only one who wonders about my family's past. I don't mean just the names and other facts, although I know those are important to many. I mean the stories... Like, how did your great grandparents meet? What was it like when he left to go to war and she had to get a job outside the house for the first time? Did his mother like her? Did her father think he would never amount to anything? What about when they came to America, like my great grandparents... was that terrifying? What about the barber shop they owned?

So many questions... And I can't ask them. But I can ask my mom and dad... and when my son has grand kids, they will have some stories to share.

Life with a Purpose

In the past nine months, I have thought and talked a great deal about the Big C at work. Every woman I talk to gets the same lecture on getting checked. And recently, I have heard from a number who listened. In fact, I have also heard from male customers who listened... and this is what I have heard back.

Most of the women who have talked with me and heard my plea that they get checked came back with smiles and good reports. Every time I hear an all clear report, I smile and remind them to be vigilant. One young lady, or rather, younger than me lady, came to tell me she took my advice and MADE her doctor give her the mammogram.  She is in her thirties, but has a family history of BC and thought maybe she felt something, but wasn't sure. Her doctor poo poo-ed her at first, but after talking to me, she went to him and argued. A week later, she had her test. Two days after that, she got the phone call. Invasive Ductal Carcinoma. Not what you want to hear, but she caught it at age 36. Four more years and it could have spread anywhere. She came back to thank me. I hugged her, gave her my phone number and told her anything she needs to talk about... just call. Anytime. Even 4am. Don't be afraid. You have cancer, sister, but it doesn't have you.

A man who has watched me talk to her came to me afterwards and told me that he had been watching me throughout this whole ordeal. His aunt had just been diagnosed and had a mastectomy. He said he thought about me when he talked to her. Then he asked "What is it about cancer that makes people change? How do you get so strong?" I asked what he meant and he explained that his aunt is in her seventies, but had the surgery and went right back to caring for her husband who has Alzheimer's. He noticed that I worked the whole way through chemo, was out a very short period and came back like nothing had happened. And to top it off, I was happy!

Now... I know this man as a 7 year customer. He is what we call a difficult customer. He gets mad easy, yells and has temper tantrums. But I have noticed that he has changed over the past 8 months. He always stops to talk. He smiles at me more. He takes an interest. And I don't think he even realized that he has changed... not me. But his question made me stop.

I told him this:
Not everyone who has cancer is strong. None of us are strong by choice.Some are strong by necessity. Some are strong by faith.  Some of us are just stubborn. But you can't beat it if you don't fight. Sometimes you fight and still lose...
Cancer doesn't change you. Facing your own mortality does. But you know, you don't have to have cancer to make the same change. All you need to do it look at the beautiful woman you woke up beside and that beautiful baby asleep in the next room and realize that you are blessed. To start with... you woke up, and somewhere out there, someone else didn't. Secondly, you have people you love who love you. And most importantly, you just have to realize that you are not promised the first two things forever, so enjoy them right now. Also...( and this is where I put things in perspective) before you go to get upset over something, ask yourself... is this really worth getting upset over? I mean... in my life, if it isn't as bad as the news that I have the big C, then it isn't worth getting worked up over. Finally... when you lay down to sleep at night... don't forget to say Thank You... because today was a gift, and we should always be thankful for the gifts that come our way.

Butter and the cookie monster

I had to post these two short stories separate. You'll understand when you read it.

I had two major chemo brain incidents while in NY. The first was the day we got there.  It is otherwise known as the attack of the cookie monster.

We went to the first viewing, and while we were outside, a woman came up with a plate of cookies. I know I have met her before, but for the life of me, I can't place her. She goes inside, then comes back to tell me to make sure the cookies go where everyone is after the service. I make it a point to not forget the cookies. So after the service, I took the cookies with us to Tara's house, where Dad's family is gathered. Turns out that the woman was actually one of her mom's relatives and I was supposed to get the cookies to that side of the family. I am now a cookie thief. I have misappropriated the cookies.

The second is what I will call The Butter Incident.

After the services, we went to dinner with the family at a country club. I got my plate, my roll and a pat of butter. I sat down, buttered the roll and started eating. Of course, we are at a table filled with the younger cousins, so there is a lot of conversation. I went to butter my roll and realized the butter was missing. I could have sworn I picked up butter. What did I do with it? I was looking all around my plate and someone asked what I was looking for. So I explained I had misplaced the butter. Then I noticed the roll... it was already cut open... don't tell me... I lifted the top and it was buttered. So I started laughing. Of course now everyone wants to know what is so funny. I explain what I just did. Meanwhile, Michele thinks I just wanted more butter, so while I was explaining what was so funny, she dropped a pat of butter on the plate. I turn back to the plate and THERE IS THE BUTTER!!!!! Oh My GOOODDDD!!! I KNEW I had picked up butter. And Of course, I have already forgotten that I buttered the roll. I am honestly startled by the sudden reappearance of my missing butter and I say so loudly and emphatically, to which the whole table begins laughing. They had all seen Michele put the butter on my plate and thought I had seen it too. I pick up my roll and once again discover it is already buttered... wait... then whose butter is that on the plate?

Michele said the look on my face was priceless. And I may never live it down... in fact... the next day, her cousin gave me a whole stick of butter of my very own...

Family Part 2

Okay... so... We are Driving to NY, which is normally a 12 hour trip. I had Herceptin that morning, so of course I am loopy and groggy. Our future sister in law and the baby are with us and the poor baby is teething and has very bad gas. The trip turned into an 18 hour drive. I missed a good portion of it, because I fell asleep, but Michele and SIL were both completely worn out by the time we got there. Everyone napped a couple of hours and then headed out to the funeral.

It was a beautiful service. Her dad was a retired police lieutenant and volunteer fire fighter, as well as a veteran, so there were lots of uniforms there. And of course, the huge family. Oh yeah... I forgot to tell you (I think...but maybe not) that her family is Irish. Extremely Irish. Did I also mention that there are a lot of them? My poor SIL had to meet this huge family after three hours of sleep with a fussy baby. Then there was me... Chemo brain in action... trying to remember names and attach them to the right people (which I am not good with on a regular day, let alone after 8 months of treatments and a long car ride) and hoping I don't confuse anyone. Of course, I know her aunts and uncles on her fathers' side. They are the most amazingly warm and loving bunch of people. They love my wife so much and they just opened their arms to me from the start, so every time I see them is a joy. Add to that all the cousins who are so willing to love and be loved and I wondered why I had been so worried about coming. Wait... her mom... that's right.

Due to the sheer size of the family, or so I thought, I saw her mom about twice. Once when I hugged her and told her I was so sorry for his passing and then again when we were at the dinner after the burial service. I was taking pictures of everyone, and took some good ones of her and the family. Turns out, the family had decided to prevent any problems by never leaving me alone. Michele told me this afterwards, and I could just kiss every one of them. I know it was hard on everyone, losing Dad... but I think it was wonderful how his family protects their own. Her mom's family... well...

The one aunt who I respect a great deal was polite as always. Her mom was polite. The other aunt... as soon as I was alone came up to me, scared the crap out of me and began to tell me how I need to ask her personally for any help we might need, not do some Facebook crap.What she was talking about was the fundraiser we did to pay medical bills. I just nodded and smiled. I mean... I see her point. If we need help, we should just ask, right? But I have a hard time doing that.Asking in person for money that we might not be able to repay puts the person being asked in a difficult position. I didn't want anyone to feel obligated to donate. The whole point to a fundraiser was that people could contribute if they wanted to, in any amount they wanted, but they weren't being pressured to do so. Also, they could do it anonymously if they wanted. I had plenty of those and believe me... I valued every single donation because it paid for a good portion of the bills that were piling up. I am still paying some of them.... but that's not a problem. I have time to pay them now! At any rate... I think it's easier on people to be able to just share the fundraiser site even if they couldn't contribute. Just the fact that so many people sent me prayers and good wishes made it worthwhile. I was touched and surprised by the people who helped, and I can not begin to express how thankful I still am for the generosity of my friends, my family and their friends and family.  So maybe for this particular aunt it seemed.... ummm... cold? I don't really know... I mean... I know why I chose to do what I did, but I don't think that side of the family understands how hard it was for me to even ask for help. But, you know... that's okay, because I have really gotten over worrying about what anyone thinks of me. I am what and who I am and while I am always trying to better myself, I still make mistakes and I guess that may have been one of them.

So... after all the funeral services, we got to spend some quality time with various members of the family. Can I just tell you how much I love her dads family? It was like walking into a room of all your favorite people. It was like having the best hug ever. It was warm, loving and accepting. It made me want to pack them all in my luggage and bring them home. I loved watching how they treated each other. I loved the fact that they care so deeply for family no matter what time or distance has passed. I regret that we haven't had more time with them in the past and I swear that we will find a way to have more time with them in the future. It was exactly what everyone wishes for when they think of family. And I am so honored that they opened their arms for me... not just because of Michele, but because they are just that kind of amazing.

Family... part 1

This may be a long one, so bear with me. Also... this might be a time to remind anyone who reads this that I have made a choice to be completely honest in everything I post, but that all the opinions are mine and mine alone... and sometimes the things I think and say may not be pleasant.

Michele's father passed away June 7th. It's amazing how you can go from ecstatically happy to unbelievably sad in such a short period of time. To add to that, my birthday is also that week. It's hard to explain.  To know that I have time is amazing. To celebrate a birthday that I was afraid I wasn't going to see felt like a victory.  To hear that my partners father, who she loved so dearly, was gone was sad. To try to help her cope with her mixed emotions was frustrating, confusing, depressing and at times I felt completely bewildered. I can't speak for her, so I can't say what all was going through her head. (I have asked her several times to feel free to post anytime she wants, but as yet she still hasn't) All I can say is that my heart hurt for her.  So, of course, I rearranged work so that I could go with her to the funeral. Who wouldn't? The thing is... her mother has never liked me.

I know there are lots of women out there who have difficult relationships with their in-laws. Mine is probably not any different than anyone else. I have never understood the why of it, but she doesn't like me, has never liked me and I don't expect that to change.I have often wondered how to change it. What exactly could I have done differently in the past... what did I say or do that started this and how can I make our not so hot relationship not have an impact on Michele's relationship with her parents. So, I have done my best to stay out of situations where I might do something or say something that will add fuel to the fire.And of course... since she doesn't like me... I am not crazy about her.  Strangely, I have always expected that eventually we would be taking care of her, and you know, I am okay with that. That is what you do for family. No matter what, your parents and your spouses' parents will eventually need you to look after them, and this is something you do no matter what the history you have behind you is. I'm not saying that it would be easy... after all, I am only human, and really... even asking Him to help me not have a cold heart or mean thought doesn't always work. I have said some things in the recent past I wish I could take back, but you can't un-ring a bell.And if I am perfectly honest with myself, it's not that I would take back what I said, just how I said it. Again... I am only human and I make mistakes. (This goes back to some of the things I talked about in earlier posts about looking at the things in your life that you aren't proud of and admitting that there are some ugly things inside yourself.)

But that's really not what I wanted to talk about. I mean, it feeds into what I want to talk about, but I am not writing this to absolve myself of being an ass, which unfortunately I am sometimes. The thing is... I was really unsure about going. My head was like a Greek chorus on crack. Should I go even though I have never been considered by her mom's side to be family? What if I stayed home? Would that be worse? What should I say? Should I say anything? Should I sit with the family or should I sit in the back or should I stay in the bathroom? Do I give my MIL a hug, a handshake or just stay away? What do I need to wear? Should I wear a hat or a scarf? Which will draw the least attention? Should I just go without either and hope everyone thinks my new hair looks okay? What do I do if someone asks me about my health? Is it appropriate to talk about it at all? How do I handle the stress without drawing attention to myself? What do I do if she gets mad at me? What if I say the wrong thing? What if I do the wrong thing? What if she wants to let bygones be bygones? Can I do that? Should I ask that? Is there a rock I can crawl under till this is over? What if it were my funeral? How can I help Michele best? How do I keep from being in the way? What if her alcoholic aunt corners me? What if the dogs try to eat Emily? How do you act at a Catholic service? Should I kneel or stay in my seat? What if I don't know the responses? Will everyone understand that I have chemo brain and can't remember names very well? Can I just stay with the half of the family that likes me or do I have to do my duty to the other half? What if I forget to offer condolences to someone that I should?

So... Regardless of the crazy thoughts in my head... I went.

The R word

There is word I have been waiting to hear. It's a special word, a word that seems almost impossible... but I heard it today for the first time in relation to me. I wish I could say it is a five letter word, as in "cured", but it's not. On the other hand, it's much better than a four letter word, as in dead. It's a word that means I can let out my breathe, which I feel like I have been holding since October. It's a word that means I have some time, that I can pick up my life again. Ask any stage IV patient what they are waiting to hear, and I will bet they say the same thing. Yes... it's Remission. I am officially in remission.

We went to UNC- Chapel Hill today to the Cancer hospital and met with Dr Dees, who is the Associate in charge of the Breast Cancer Clinic. She went through my records and talked with me about where do we go from here and those magic words came from her lips. No... there will be no more Chemo or radiation because there is no need for it right now. After all... currently we have no proof that there is any active cancer anywhere. The lymph nodes that lit up the first PET scan but disappeared on the second one... well, she says those could have been anything... a cold, lupus, stray cancer cells... who knows. But the fact is that they aren't there now. Yes, there MIGHT be some rogue cancer cells floating around, but the Herceptin should take care of that. Yes, the cancer MIGHT have a recurrence, and if it does, we will try something else. But for now... exercise and Vitamin D3 are her suggestions.

So now... I exhale.

How amazing it feels to leave a doctors office with time ahead of me filled with something other than worries. Yes, I know... it's temporary... but there are people who have been in remission for years and years... and I think I can handle that. At least until the day they say they have a cure. So... here's to me and to all those people who prayed for me and with me... Thank You, my Best Friend, for giving me this gift. Thank You for the lessons I have learned. Thank You for the strength to fight, for the love of family and friends and for carrying me through the Valley of Shadows.... I knew if I just had Faith, we could make it through.

Ringing my Bell!

Well, it's finally over with. I finished Radiation on Friday. My skin feels like I have the worst sunburn ever, and under my arm is so swollen it's hard to actually find a comfortable way to sleep, but as far as my cancer battle plan... the worst is over with. I have an appointment to go to the UNC cancer hospital for a consultation the first week of June. We are getting a second opinion there on our next course of action. The possibilities are taking Tykerb (a chemo pill) or the new treatment, scheduled to be approved on June 8th, or who knows. My oncologist is gung-ho for me to have a second set of eyes look at my records to see what will be the best way to keep me in remission for as long as possible. I am glad she is not one of those doctors who thinks she knows all the answers, but instead she is the type who wants some extra eyes looking for a solution.

I got to ring the bell (a tradition at the hospital... you ring the bell in the hall when you are done) and it was very emotional for me. They gave me a certificate, some mardi gras beads and a pin that says "survivor". I went in that day not wanting to do it... ring the bell, that is. I just wanted to get radiated and go home. Part of me is kinda superstitious about things like that. I think I was afraid to ring my bell and say I am done, only to have to go back and do it again. Like when you say something and then knock on wood. In the back of my head is this voice constantly telling me to never say things like it's gone, or that I am in remission because the way my luck runs... well... you know... I just keep expecting to hear more bad news. Funny thing is that I am okay with it. The knowledge that it is only remission and not a cure means that I am sort of free. I can let small stuff go. After all, why get worked up about anything at this point... I am terminally ill and really... what is anything compared to that?

But back to the being emotional thing... I sat in the car and cried a little. Not a lot. I really haven't cried a lot since the day I was diagnosed. In fact, I think I have cried less since I was diagnosed than I did before I had cancer. But I did cry a little Friday. Mainly, it was relief. I have been through so much since October 12th when I heard those words no woman wants to hear, and I am still standing. My relationship with my wife is still strong- stronger than before cancer. My relationships in general are all better than before. Life has become a whole lot more important to me. I feel more connected. I feel more in touch with the spiritual. I have a greater thirst for living. I am waiting impatiently for my body to heal enough to go out and have fun. My thought is... if the average life expectancy for IBC is 5 years... well then, what things can I do in that time?

One thing I can do is keep talking to other women about IBC and encourage them to talk to their friends about it. I can spread the word, educate and encourage the women I love to go get screened. I can hug any person who needs it. I can answer questions. I can speak about my experiences. I can share. I can give thanks. But most importantly... I can love and be loved.