12/31/08
More New Year's Resolutions
Here are my latest ideas: (I don't share the biggest plans because I would hate to have to say I did not accomplish them. Let's just call them "Fitness 2009". My Dad probably remembers Fitness 93, Fitness 94, Fitness 95, etc. It's been awhile since those days, but I still can't lose the fascination with the yearly Fitness Plan. Probably helps that I've taken about 10 years off.)
New Hobbies! Emma and I have gotten into ice skating lately, thanks to the Christie family. So much fun. We are going to do more rock climbing and snorkeling in 2009, too! So so so fun.
More goal setting to keep myself on track (mostly, to keep me from wasting a whole day cleaning up after people and wasting time on the internet.)
More consistent discipline of the Lucken children! (Yeah, right.)
Have to go discipline my middle child now. She is hurting me for not playing catch with her in the house. Is there ANYTHING wrong with this picture?
WOW, Mom
She was looking at my chest! "WOW, Mom. Those are B-I-G."
What do I say to that? And now I feel even more confident with not filling the expanders up to the full 450cc limit (which was even not that big...I know someone who chose 650 so she could get to her normal size C)...my family and I are clearly not used to these proportions on my body!
Going from a saggy little self to this fully upright, hard expander look is quite a change. I went into my plastic surgeon's office the other day, telling her how it was a little sad that my cat, who used to be able to put her entire body between my saggy little breasts, can only stretch one paw through that cleavage now. I don't want to be able to fit a whole cat between my breasts, but I'm not sure I need only a rock-solid inch of cleavage, either!
She told me the look after this next surgery (exchange of tissue expanders for implants...only 16 days away, actually) will be softer, and there will be some movement (i.e. it won't be like my family is hugging mom + the two rocks on her chest). She said, and I quote, "Your cat will be able to get back in there." (Loved that line, so funny.)
12/29/08
Need a new year's resolution?
About the only real advice I have is to enlist one good friend/sister/relative as your walking buddy. It makes the whole thing a great adventure, and something you will always share!
12/28/08
Dance parties
OH, OK, then. Continue on with your yelling and general boisterousness...
A cowbell?
(I made a joke that our wedding looked just like that...Katie believed me.)
During this incredible scene, Emma pops out with "He should have given her a cowbell instead of a wedding ring, since she's always running off!"
Oh, the joys of a 9 year old...so full of sass, just how I like 'em.
12/23/08
Wrapping paper
This year, though, my disdain of wrapping paper went flying out the window, because the wrapping paper and I have our own little internal joke! I pulled out the same rolls I use every year to wrap a few things I couldn't put in fabric bags (my bad, bad extended family members - everyone who does not have the last name Lucken and isn't forced to do what I say - do not espouse my belief that my fabric bags are the best things in the world)...and there on every roll was a huge, huge dent! Here was the bad wrapping paper that caused me such pain and agony in early January when I fell into the barrel in which the rolls reside! Here was the wrapping paper that bruised me, from the barrel that knocked the wind out of me, that made me check to see if I really was healed from my dasterdly fall, that made me find my breast cancer.
I might still adore my fabric bags, but I also have a very soft spot in my heart for these dented rolls of wrapping paper.
12/20/08
2009 resolutions
I'm excited for this New Year, though...excited for what it might mean. After all, 2008 brought along some pretty spectacular things - a new nephew, breast cancer, lots of surgeries, new friends, connections with old friends, a new puppy, and stronger family ties. 2009 promises at a minimum 2 new nephews...how can that not be an even more spectacular year?
So, in honor of a new year, I'm going to make some goals.
Here's my first one:
Sometimes people come into your life who make you want to be a better person...who energize you and help you to dream again. In the absence of such a particular person, why not look for that energy and those dreams in other places - books, movies, learning, the pursuit of new activities? So one of my resolutions is to take more time out from chores and constant movement to seek out enrichment activities. Yes, I could constantly flit around and find things to do, to clean, to build, to grow, to tend, to nurture, to entertain (and I do)...but in 2009 I'm going to take some time to do that for myself.
More tomorrow...daughter number two is succumbing to the vomiting monster and needs me.
BRCA+ decisions, and babies...
This is a post I wrote today for Trusera. I thought I would copy it and paste it here! And to my friends, I should say - you all know I don't need any other babies, that I am up to my ears already with the children I do have! That's why the following thoughts are so weird:
I've been dreaming of babies, lately...lots and lots of babies! Each time I see them, in my dreams, I cry and cry because my baby days are done, courtesy of the lap bso I had to protect me further from my errant BRCA1 gene. In my waking hours, I often forget these dreams and the grief they involve. UMMM...could it be that my waking hours are consumed by three children I've already birthed and am raising? Or is my rational, awake mind more adjusted to my BRCA+ decisions than my subconscious mind is?
Rationally, I know how lucky I am. Though I spent years wondering why I went this way into motherhood when so many other women my age were dating, or building their careers, or at least leading an adult life free of primary-colored plastic toys - those thoughts went out the window with my diagnosis. I could see if in my doctors' faces - my breast cancer/brca+ diagnosis was easier all the way around, knowing I had three children. All of those tough decisions were easier - I had breastfed, I had given birth, I had THREE children, which is more than many people would even want. The doctors could give me their recommendations (bilateral mastectomy, chemo, bso) easily, without worrying about my fertility. And I could make those decisions without worrying. After all, THREE is more than I can handle, on most days!
So what I want to know is, WHY the dreams? Why aren't I smiling in my dreams, happier to know that I have missed that many ovulations (chances for my ovaries to send out little teeny cancer cells before I even knew I had cancer)? I'm thinking that even though RATIONALLY I know I made a great decision, subconsciously I'm still dealing with the fact that I am BRCA+.
Even though I am in the throes of menopause (which isn't really very difficult at all for me - a little emotional, yes, and some mild hot flashes, and a few minutes' delay in falling asleep...but that is easy, in my opinion), my mind is still 35, and my friends are all still pregnant or having their first babies. Holiday cards show babies in front packs, and my baby is now up to my hip bone in height (not a small feat, as I'm 5'9"). It's still a little weird to think that the baby years are over for me. And I'm just slightly disappointed that I can't be going through this stuff with some of my friends, or with my sisters. I've been waiting for them all to have children...I just didn't think I would be so thoroughly done with having them. (And I had been holding out the idea that I could have another baby if I missed it all that much, until my diagnosis year came blowing through.)
But (here comes my trademark phrase), oh well. Motherhood came to me surprisingly quick, but then, so did breast cancer. I did all I could with both...really have tried my best to be a good mother, and really tried my best to fight cancer and improve my survival chances. Somedays when I feel so NORMAL, I want to have every option open to me that many 35 year old women have open to them - but that's when I have to remember the special things breast cancer taught me. Who needs a whole life of normal? Let's get on with having an EXTRAORDINARY amount of great moments, not thinking about what is lost or what can't be had.
p.s. - I do think these thoughts are probably thoughts many women have at the end of their fertility...the what-if's, etc. Luckily, I only have them in my sleep, (during the day I just want some quiet time!) or we'd have to start seeing adoption counselors! OR I'd have to steal my nephews, nieces, and nephews-on-the-way. ( I did want to have another boy...you'd better keep those babies close to you, Amy, Julie, and Bonnie!)
12/16/08
My organized girl
Things to do
- Get up out ove bed.
- Go to eta.
- Go to brush my hara, and theth.
- Get drest.
- Mac lunch and snac.
- Get shoos on and chot on.
(This checklist had boxes next to each task...all filled up with checks!)
LIfe forces
Anyway, back to sunshine... today I received one of the nicest emails from a man we met on this breast cancer journey. He mentioned living in a "new world" - one where you know you aren' t free from health challenges like breast cancer. At the end of his email, this is what he wrote:
You and your family will always be a part of our "new world" which is at the same time challenging and overflowing with the most powerful life forces imaginable!
I just love that sentence - the embrace made by words, and the vision of powerful life forces flowing around. It is so reminicent of this whole year - of how people CAN and DO reach out everyday to other people (sometimes embracing with words, sometimes with gifts, sometimes in person!). More importantly, it puts words to what I learned about cancer this year and couldn't quite express so succinctly: cancer does put you so in touch with the "most powerful life forces imaginable"!
Whether I was recovering from chemo and feeling my life come back to me, viscerally, or exulting in something I could do which I previously thought was improbable, or seeing the way cancer can bring people together - cancer taught me to see life forces at work in the world. Even today, when I was (dumbly) all stressed about (of all things) how I was going to manage my stress!, I saw a scene at the oncologist's office that made me take pause.
- a woman, spunkily making her way into the chemo room. She was so put together and full of vibrancy that I hadn't noticed her infusion pump at her side until they called her name...
- a husband, fussing over his wife, taking her coat at the exact moment she started to take it off, helping her fill out her chemo questionnaire, patiently attending to her needs. And the wife, for her part...underneath everything (like the infusion pump, her hands which couldn't quite work, her clothes which she had to choose for ease of dress) I felt like I could see the person she was: the one who had kept everything together all of these years and now had to cede some of that responsibility but was doing it so gracefully.
- a mom, playing with her child as he waited for his appointment with the pediatric oncologist.
In all of these scenes, the thing that struck me was "life", not cancer - people continuing to thrive, to love, to play. Life forces at work!
12/14/08
I love your hair?
"I have to tell you, I love your haircut! I wouldn't do it myself, but I think it's really great."
I was shocked for a minute, then confused. Did she secretly KNOW that I would never have chosen this hairstyle, that this hairstyle isn't really a style at all, just what a person's hair would look like 2 months after she was bald? A closer look at her stylish apparel and long flowing mane didn't seem to present someone who was spending a lot of time thinking about things other than style, though. How could she? I would have been emotionally AND physically exhausted if I had to shop for that stylish outfit, and spending that much time on my hair, ever, would never have been possible for me. I would have thrown the curling/straightening iron out the window in an impatient rage. (I know, it's possible she has conquered domains foreign to me AND spends time searching out strangers who have recently battled diseases to compliment them.)
Normally in this situation, I would have opened my mouth and told her all about my cancer, even down to the size of the lump, the bilateral mastectomy, the kind of chemotherapy, etc. (Not only am I unable to keep my mouth shut, I like to take every opportunity to educate, even if it is inappropriate. Well, it is probably the inability to keep my mouth shut...I only rationalize it with the education piece.) I think I have learned some restraint, though, because I just smiled and said, "Thank you so much!"
12/11/08
How I'm not crazy, and why I love friends
I love my mom, but I am very at peace with her spot in the universe and have been for so many years now. In fact, I often feel more protected than I could have been if she was alive. I've had several very visceral moments when strange and miraculous things have happened to me, and at each of those moments I really felt my mom. So I am happy, and not grieving for her.
I DO think, though, that sometimes anxiety can be a habit. Yesterday when I wrote I was trying to get to the bottom of WHY I might be feeling anxious...and I think it is partially a holiday habit which I now must break. Maybe there is something about this time of year that subconsciously puts me on edge. I think it is something like how I used to attribute fall in Beverly Hills to being miserable, because during my first year here, I was feeling sick, pregnant, and depressed in the first trimester with Katie (I was off depression meds during that first trimester...don't think I didn't want Katie very, very much!). I love Beverly Hills/this area but for a few years after that I got a whiff of that yuckiness during the fall. Perhaps my holiday anxiety was also a habit which needed to be broken, again!
On a last little side note - we did turn our hard day around, with the help of great friends (like Patty, who commented!). Maybe in 2003, we had a caroling party on my mom's day, and then again in 2005. So now on that day I can remember the fun we had during those parties! I may just have to pull out another one of those again next year (it might not fit with my theme of relaxing through the holidays this year!). Oh, and I have to get a piano, and commission Rob to come again and play for us...and maybe someone who can lead the songs, since singing is not my forte (though I love to do it).
12/10/08
Making Christmas
Christmas was my Mom's favorite holiday. I have memories of her taking a job at Toys R Us, just for the toy discount, of the year she special ordered all of the Strawberry Shortcake pets because we had the dolls before they came with pets, of adorable stuffed animals under the tree for each girl, of stockings brimming with fun, lovingly placed on our beds by Santa, and her little notebook filled with notes on all the special things we girls wanted. Somehow, she also managed to have special things for my Dad, as well as for the other many members of our extended family. It was beautiful, magical, and filled with love.
Christmas came crashing down one year, though, when we came home from Mass on December 22nd, to find my mom dead on the floor. (We didn't know that at the time, but the sight of my little sisters crying and my Dad trying to find a pulse was enough for me...I don't remember who called for the ambulance but I waited and prayed for it outside.) I was 12, and keenly aware that the magic was gone. I recall my Dad calling me to his room as he waded through all of the presents, trying to match gifts with girls. I remember the pain I felt as I thought of the slippers hidden in my own closet, bought for a mom who could no longer wear them. As my broken family opened presents on Christmas, after two days of visitation at the funeral home and the day before we buried my mom, the pain began to morph into the panic I can still feel. I felt obligated to take on this holiday and to keep it special for my family.
It was a doomed operation from the start, though. Holidays are a time when you so keenly feel a loss, and if you lost the person who MADE that holiday for you, a mother, and 3 days before Christmas, you just can't fix that. It may have been the same had I not fretted so long and so hard over what to get for my Dad, or how to make the holiday special for my sisters, because it just couldn't be. I wasn't smart enough to figure that out, though, and for me the holiday season just became this time of smiles I plastered on my face, covering the anxiety I couldn't control. "HOW can I make them not feel the loss of what we had?"
I found more joy in Christmas once I had children...but at the same time, I'm completely flummoxed by the happiness my mom seemed to get from this holiday. HOW IN THE WORLD DID SHE DO IT? I'm about 1/5 of the Christmas mom that she was, and it's still making me crazy. Could it be that I am worn out from all of the work I put in from years 12-26? Or is it that the grief of those years somehow injured my brain, and made me incapable of even a fraction of the stress the holidays brings on?
I think I had a revelation last night, though...I can't do it all, and I can't MAKE the holiday for anyone. More importantly, I don't NEED to Make Christmas for anyone for myself. My dad and sisters, and each member Bill's family all are part of their own special units who provide the most intimate celebrations. My own little unit doesn't even have a form they are filling out, "How this Christmas compares to all the other Christmases ever had, by anyone, and why ours is suckier." They are going to love Christmas because it is magical, all the time with the family and the exchange of gifts/love. And they are also going to feel let down when the presents are all opened, but that doesn't mean it was a failure, it just means that they are kids. Lastly, I can't compare the joys I take from the season to the joys my mom took, and it's not wrong if I don't love the shopping, the buying, etc.
What I can do is add some misery to the holiday, if I want to keep stressing about it - I can make Bill miserable by nagging him to participate with the writing of holiday cards, holiday decoration, and all of the things I have felt for so long were essential to a good holiday. I can make myself miserable by carrying around my own checklist: "How this Christmas compares to all the other Christmases ever had, by anyone, and why ours is suckier." OR, I can dial it down a notch.
I can trust that everyone will indubitably feel the magic, even if I don't make 10 different kinds of cookies, get all the perfect gifts, do every service project I run across in this holiday season, etc. If I can't take the stress, I can remove some of it. I don't need to do everything...being here and happy is enough. Dancing around to some Christmas carols, taking time to relax, enjoying the moment...that's going to have to take the place of some of the extra presents and preparations this year. I hope no one misses what could have been, but I am pretty certain they won't.
I sure wish I had figured this out 20 years ago...
12/8/08
As "normal life" descends back upon me - cancer treatments are sliding into memory, and even the reconstruction is close to wrapping up - I'm surprised at how easily one can forget the great lessons that cancer teaches. It's the beautiful, inspiring holiday season, and despite the fact that most of my year has been taken up with cancer and I SHOULD KNOW BETTER, I still find room within me to get stressed.
SO, SO, SO, DUMB.
I'm trying to resolve myself to take things a little easier - who cares if the house doesn't have lights yet? Who cares if all the cards haven't been written and I can't foresee enough time to get them written? Do we need to have our tree yet? Will the world fall apart for my kids if they don't have that special "Christmas morning feeling" preceded by hours upon hours of preparations by their mother? But it's not working. I'm still yelling at my husband for not helping me write out Christmas cards, and making snarky comments like, "Are we going to have Christmas lights this year?" and "These things don't happen by magic, you know."
What a total snot. I wish I could slap myself. I guess I could enlist Nathan. The other night while we were wrestling he hauled off and slapped me so hard I made a decision that I needed to either stop wrestling, or do some sort of quickness and agility training so I can deflect the blows. (I think I'll go with the latter. I know Bill hates it when I rile the kids up and we act all demented and do dangerous things, but it is so FUN. A girl needs to get her cheap thrills somewhere, and I get mine from being terrorized by my children.)
On top of that, I want a clean house, I want to exercise daily and eat healthy things, and have time to read and to write, and to communicate with friends and family, and to teach my puppy how to not bite the kids, and to spend time with the old pets, and to learn new things and conquer new frontiers...and whatever else there is to want, I probably want that too. I'm just in that mode.
Unless I get my own little collection of elves, though, I can't see it all getting done.
12/5/08
Reflection and reply
Pam, if you decide to the gym, and attend two 1-hour classes in a row with people that are smaller, cuter, made-up, better dressed, with more hair, and in better shape than you, you are a glutton for punishment.
I already knew this about you, but this is taking things to a new level! I really don't think you should keep up this self-punishing behavior.
Reply to self:
OK, I'll go get some better-looking gym clothes. As soon as I can walk again.
12/1/08
Annoying myself
YET, I INSIST on walking around with my head of nearly-no-hair, and then being upset about it, just about all the time. I hate the way I look with this hair, or lack thereof. I don't want any of the attention about how it is growing, etc. And I could do something about it, but I am refusing! I want to just smack myself...I'm acting just like my young daughters, crying about something they could so easily fix, but wanting to just cry about it without fixing the problem.
The thing is, I feel like I should be well-adjusted enough to like these hairs on my head, no matter how short they are. Every other young breast cancer survivor I know is so cute and confident with her short hair, and I am determined to be that strong, too...but failing miserably. I am absolutely convinced that I am a huge baby about this hair, and the part of me that is convinced of that is in an epic battle of wills with the part of me that just wants to look girly again.
The huge baby is winning! ARGH.
The attachment is perhaps a little too strong
Today, thankfully, he slept in, so we averted our normal Monday crisis. However, Bill came home at lunch, and then stayed for a bit while I went to the plastic surgeon's for my fill. Now he's gone though, and Nathan is back to his Monday grieving. Writhing around, he is yelling and crying, "I WANT DADDY! ARRGGG! I WANT DADDY!" He's added to his repetoire today, though...it's a particularly hard Monday: "I WANT DADDY! CAUSE HE'S MY FAVORITE GUY! I DON'T WANT HIM GO TO WORK! CAN'T HE JUST COME HO-OME?"
I've got plenty of time to blog about this, because he's going to be crying about it for the next 20 minutes, no kidding. Poor child. And poor me, to have to live with such a superstar as Bill. I can assuredly say that I never receive this sort of adulation/misery when I leave!
11/30/08
Oh, if they only stayed like this forever...
Here's what she wrote:
"If I could choose anyplace I could live I would choose to stay here. But if I could go on vacation I would go to Chicago or California to see my aunts. Let me tell you about my house. It would have comfy pillows and pretty carpet. I would live in the empty lot down the court. It has a big back yard with these bucks that go sleep there. The house also has a stream. Also it has a little place where bunnies live. I would be able to visit my parents a lot. I would get a big room just like my parents have. I could see how our puppy is doing. I would get two cats to keep me company. I would have a rocking chair in my room. I would have a great backyard where my cats could play. I would have seven bird houses and two bat houses. I would feed the deer. I would have a hummingbird feeder. I would leave nuts for the squirrels and I would have a lot of animals visiting my yard. I would love it. If I could go on vacation I would go to my cottages in Grand Bend and Bayfield."
Oh, my darling girl. I can't tell you how many times I mentioned the many places we've gone on vacation, all the places she could live, or even visit...and she only wants to live here and visit her aunts and grandparents if she vacations! I think it's so precious to have her so content with her little house and life...and I do sort of hate that I'm going to have to really work with her to make this writing piece actually fit the assignment better. All I really want is for her (and her sister and her brother) to remain such a big huge part of our daily lives - FOREVER! (just like she is writing here)- and I hate to have to make her think of other places, or other possibilities!
11/26/08
Blown away
This year, I've been working on our book for about a week, and I am completely BLOWN AWAY by our year. Our monthly photo folders are LOADED with fun times - from my diagnosis time in February all the way to this moment. In the middle of all of these doctors' appointments, surgeries, chemo weeks - EVERYTHING - we've managed to squeeze in so many smiles and happy times. I guess I knew I was making a bigger effort to find the fun in everyday life, but to have such tangible evidence is staggering. This year's book is going to blow last year's book, and all those calendars from the years before that, out of the water!
We've been to Disney World, to the Great Wolf Lodge, to Niagara Falls, to Evanston twice...not huge trips but still, so much fun considering what we were up against! We have loads of family party pictures, celebrating birthdays, pictures of us on everyday nature walks...we got a puppy, I have pictures at field day, swimming all summer, the cottages. I know it sounds like a normal year with nothing really supersonic, but to me, having lived through what could have been a nightmare and looking back and seeing only sunshine is amazing. (And I know, Amy, that word is overused...but aren't you AMAZED? And you should be, because all the time I spent with you and my nephew this year made it so sunshiney!)
11/24/08
Planning for February 18, 2009
I can barely believe it...it's almost a magical turn of events. I should be ready for my final surgery around the middle of January, which is also when I will be done getting my Zometa infusions monthly (I'll go to every 3 months after the January infusion). The timing is such that I can get my port removed at the same time as I undergo that final surgery, which is great.
In another amazing turn of events, I'm writing for Trusera as a paid-stipend blogger. We definitely like getting a little stipend around here, but it does keep all of cancer-world still a little too close to me for comfort. The amazing part of all of this is not necessarily the paid-stipend part (though I like that, too!), but that my 3 month contract ends THE DAY BEFORE my one-year anniversary of diagnosis! It means within one year, I will have undergone chemotherapy and all of these surgeries (and be totally recovered, if the last one is in mid-January), my port will be gone, I'll be on Zometa every 3 months, I'll be done writing about my experience, and even Sybil will be done with her 6 rounds of chemo.
That's A LOT of stuff to have taken place in one year, but isn't it amazing that it is compactly-fitting into those 365 days? I (of course) know I will be dealing with this cancer, and my BRCA+ status, for my whole life, but I like the possibility of it being one year of utter craziness. I wouldn't even want all of my cancer stuff to go away, if I could have that happen - I have learned too much, grown, made such great friends - but it will be nice to have this chunk of it behind me!
Anyway, I am planning for my "New Year"...and thinking that I'm always going to make February 18th my own little "New Year's Day". It's my way of turning around an anniversary that could have meant a lot of sadness and bad feelings, into a day of celebration. I am proud of the person I am becoming through cancer, and thankful for my friends and family who have supported me through this. Plus, in a realistic way, each time I make it past that cancer anniversary without incident is a very big reason to celebrate...triple negative breast cancer has a higher rate of recurrence for the first 3 years. After 5 years, though, the rate of recurrence decreases dramatically...and after 8 years, some research shows that it goes to near-zero.
I don't really feel like waiting around and worrying about my cancer coming back for the next 2 and 1/4 years - 7 1/4 years, so I'm making Pam's New Year's Day count. THIS year, I begged Bill to throw his caution to the wind (now that we are almost done, we are really starting to rein in the finances which we were NOT doing 9 months ago) and to plan a fun vacation for us. He must really think I am going to live forever, because I had to really whine about it in a way I would NOT have had to whine about it 9 months ago. So, a few days after Pam's New Year we are heading off to Roatan, an island in Honduras, to swim with dolphins, snorkel, scuba dive, and be warm. (Don't you want to come celebrate Pam's New Year's Day with us? My husband can tell you how to do it for a reasonable price...)
11/21/08
A conversation with Nathan
Me: "What do you think of your mom?"
Nathan: "A crazy girl"
11/17/08
Wondering how I can be so happy...
Nathan: "Katie, you're such a djerk!"
Emma: "Do I ever tell YOU to go to YOUR room when you are yelling too much?" (Directed to me, after I sent her to her room for yelling too much!)
Katie: (silently running around wreaking havoc, giggling uncontrollably as she bothers people, and then crying when they react in a manner that is unfavorable to her)
But I am happy, nonetheless! The house is clean, the plastic surgeon couldn't pull out any additional fluid from around my surgery site, my puppy is not as big an idiot as I was expecting, and the kids are pretty great, even if they are demonic at the moment. My husband is truly number one - so helpful, so giving, so cute when he doles out my 20 vitamins a day.
Plus, why not be happy? In the back of my mind, I know I have the BRCA1 genetic defect, I know I had breast cancer, I know what *could* lie ahead. So I'm just so happy to be healthy and feeling great for the moment, and I'm going to hope this goes on endlessly!
Emma is hoping that for me, too...at recess in the art room the other day, she and her friends made me a giant poster based on one of my favorite lines from a song by The Killers. She wrote down the quote: "And if I pave my streets with good times, will the mountains keep on giving?" (yes, same quote from the masthead of this blog...) Underneath that line she wrote, "For my Mom they will!"
11/14/08
Draining and fainting...and YouTube
My darling Nathan and I rushed into the car, after changing a diaper which only seems to need changing when you have 1 minute to get out the door! I got to the doctor's office at 2pm (he is usually not in the office on Fridays, I was so lucky, but I needed to be able to get there by 2pm). I did look a little fluid-filled, and he drained 60cc's of fluid from around my expander. I didn't feel the needle go through the skin, but I could feel it (YIKES!) near the muscle. I'm not a fainter, normally, but the world sure started swirling just then!
Just picture the scarring of the 3 year old - "Honey, we need to go to the doctor right now, we can take this nap later." "Do you really have a poopy? Really? Lie down right here on this floor and I will change it!" "Get in your seat, get in your seat, we have to go, we have to go!" Not to mention his mother dropping her shirt and revealing her crazy chest to strangers (he's seen it, it's impossible to keep him out of the bathroom when he's lonely and everyone else is gone, but he's never seen me bare it to people he doesn't know! Hopefully he won't think this is what Mommy always does!), and then seeing the doctor grab a gigantic syringe and needle and pull bloody fluid out of his mom's chest! Then she almost faints so they have to flip the chair down, put cool cloths on her head, etc. And I didn't even think to bring activities for him to do, so I just pulled out my iPhone and looked up Thomas the Tank Engine videos on YouTube to keep him busy!
I love my plastic surgeon, and I love his nurse (or should I say my nurse). They are such great people that even when I was worried about this surgery, the only thing I took consolation from was the fact that I would be seeing them so much more often. (What am I going to do when I am all done with this reconstruction? I'll have to think of other work to have done...not really, I've never been happier with all of my natural lumps, but maybe I can worm my way into their lives another way.) They convinced me it was a good idea to come in and get drained...that I wasn't crazy or neurotic, that they are there for such things.
I have decided I am going to spend the whole weekend doing nothing (horrible, horrible, painful thing that is for me), and hoping/praying for no more fluid collection that could lead to an infection. And that is my story for the night!
11/13/08
This wasn't my idea...
No, this isn't our puppy...Bill is cuddling Hope right now and whispering sweet nothings in her ear. But they do have 3 of her sisters and 3 of her brothers available.
Ha ha. (It was Bill's idea to post this. I know we are the only crazy people around!)
11/12/08
The month of many surgeries is almost passed...
I just got my drain out today...how happy I am about that! Now I am just willingly taking oral antibiotics, wearing a medical bra which is sucking the life out of me with its tightness, and praying for no infection this time around in the reconstruction process. For those of you who may not remember, I had an infection about 2 weeks after my mastectomy/immediate reconstruction which required that I remove my tissue expander and start over again after chemo was completed (now)!
I wouldn't say it is time to throw a party, but I sort of am throwing a little one in my head anyway. Yes, I should wait until a couple of weeks have passed with no infection. Yes, my mother-in-law goes for her second round of chemo next week, so we are still very much living with the cyclical nature of cancer treatments in the Lucken household. Yes, I am still going to have just enough time to put my house together until cancer treatments of some sort force me to fall behind again (mother-in-law's, not mine). Yes, I can't really lift anything, or exercise vigorously, for at least another 3 weeks. Yes, I still have more MD appointments in the upcoming month than I would have previously had in 3 full years. But...the DRAIN IS GONE! Do you have any idea how good that feels? WHOOOO HOOOO!
Fun with the iPhone
What's a 3-day cancer? I sure wish my cancer had been of that variety.
Conversations with Nathan
P: "You need to eat some food first, something good for you. A sucker is a treat for later."
N: "I want a sucker, Mom!"
P: (ignoring)
N: "I want a sucker, Mom. Say alright."
11/10/08
Just the facts!
I could talk all day and all night about my breast cancer story, but if I was the person reading it, I would be scanning to get the information first, and then going back to read the story! Who needs suspense when you are already dealing with cancer?
So, to start things out, here are my facts!
- Name: Pam
- Husband: (quite a guy) Bill
- Children: 3…2 daughters, 9 and 6.5 years old, and a son, 3 years old.
- Age: 35
- Breast Cancer diagnosis: 2/18/08, Stage I, triple negative, grade 3 tumor, 1.7cm, right breast, 3 lymph nodes removed were negative for cancer
- Age at Diagnosis: 34
- Surgical choices: Bilateral Mastectomy with Immediate Reconstruction – 3/17/08 (with a couple of surgeries thrown in, as I had an infection on my right side…Tissue Expander removed before chemo 4/6/08, just recently have had surgery to reinsert that expander 11/7/08, plan for implants) Lap BSO – Laparoscopic Bilateral Salpingo-Oophorectomy (removal of ovaries and fallopian tubes) – 10/13/08
- BRCA 1: Positive for Deleterious Mutation (I just like saying the whole thing, don’t ask me why)
- Chemotherapy: 6 rounds of TAC (Taxotere, Adriamycin, Cytoxan), every 21 days – 1st round: 4/18/08, last round: 7/31/08
See, isn’t it nice to get that information up front? :)
How I fell into the world of breast cancer
I found a lump in my breast accidentally. At 34 years old, I hadn't had a mammogram yet, and as a mother of 3 young children, I wasn't so great about doing self-exams.
So in early January, I was putting away our holiday decorations (rushed, as usual) in the basement, in the dark (why?), and I tripped over a roll of extra carpet and went crashing into a barrel I used to store rolls of wrapping paper. As I lie there in the dark, with the wind knocked out of me, I felt sorry for myself. It was a bad fall! At that time, I didn't know how lucky I was.
Not quite a month later, my family and I were on a trip to Disney World when I did a self-exam...both to do an exam, and to check to see how my bruising/pain from the fall were healing. When I found the lump, I had a bad feeling, and even worse, my husband had a bad feeling, too! (He's the more relaxed partner in our marriage.)
I returned from our trip on Sunday, called my OB/GYN on Monday, saw him Tuesday, and was scheduled for a mammogram (which turned into a breast ultrasound and a core needle biopsy) on Friday. Monday night, my doctor called me. He sounded sadder and even more perplexed than I did: breast cancer in his 34 year old patient.
It felt illogical that I would have breast cancer or the BRCA1+ mutation - of all the risk factors I have ever read, I had none of them, other than having a grandmother who passed away from breast cancer in her 60s. It didn't matter if it was illogical, though - I prefer to prepare myself for the worst, and by that Sunday night, I had already gone through the scenarios in my head (it doesn't take long!).
I was ready for action, immediately! I was incredibly lucky, also. At 34, I had 3 children and had breastfed them all. I was proud of my extra-utilitarian (though small and finally, saggy) breasts for feeding my babies, but I was also ready to hand them over to the surgeon. I was given surgical choices (this was before my genetic results came back), and unequivocably chose bilateral mastectomy. If this could happen to me at 34, what was going to happen at 44, 54, 64, 74? (I was 12 when my 38 year old mother passed away from a massive heart attack...a big goal in my life has been to become an old woman and I would give up anything to get there.)
My surgeon knew I was BRCA1+ on the day of my bilateral mastectomy, though I wouldn't find out until I met with the genetic counselor about 2 weeks later. Somehow I had "felt" that news coming, too...another "illogical" prescience. I had almost no breast cancer in my family - other than my paternal grandmother. It was a hidden defect in our case - she had 6 boys, and though she was one of many children, they had few children and those children were also almost exclusively male! I had a feeling, though...two of her sisters had died of "one of the cancers of the reproductive system - cervical or ovarian?" when they were younger (though they were older than I am. When I got my BRCA1+ diagnosis, I could answer that question quite definitively - ovarian cancer.)
Although I stumbled - literally and figuratively - into the world of breast cancer and BRCA genetic mutations - I have to say, I feel pretty lucky. I feel lucky for the fall that helped me to find my cancer, lucky for the kind doctors and medical staff along the way, lucky for friends, family and acquaintances who have made these 9 months pretty special for our family. Who would have thought a person could say that about 9 months filled with surgeries, chemotherapy, and recoveries?
Life with Hope
Truthfully, there is probably not a good time to get a puppy, but there is probably not a bad time, either. It's up to the family to weigh the risks and benefits of adding a new family member, and know there WILL be both risks and benefits. For us, could we have waited until after my surgery? Yes. Do we already have a lot of pets and other things going on? Yes. BUT...Do we have a lot of pets and other things going on? Yes, and those pets and other things going on makes it almost easy to have a puppy, too. We are in a period of relative chaos, and what is one more piece of chaos added to chaos? Just chaos.
We knew that Hope was not going to be the puppy that changed our world, as we've already supplied ourselves with those pets - our first pet, adding a second pet, our first dog, the pet who defined me as a deranged person (the rabbit whose cage was in our dining room - yikes, but it was our first house, a definite fixer-upper), the mistake (guinea pigs for kids...they are great, though, just not as fun once you get up there in numbers. They turned me into a mini-zookeeper). Our family likes our puppy quite a bit, but it would be a little much to say we are all over the moon with her very presence.
Emma summed it up pretty well this morning, when I asked her if we now have too many pets. She looked at me with a strange look, and said, "No, Mom! They are my friends who keep me company and sleep on my bed at night!" She feels the same way about the pets that I do - they keep watch over her, snuggle next to her when she's sleeping, or come to her when she is upset. It will take a while for Hope to be able to provide us with the companionship and care that we get from our elderly pets, but that is why we got her. Hope is an investment in our future...and isn't that true of all hope?
Anyway, we are happy with our puppy. I still have a drain from my surgery but it is not setting me back at all, and it's only Monday (surgery was Friday). Hope has learned to come when she's called, she sits on command, Nathan knows how to put her in a head-lock when she is biting him (the problem with a 11 week old puppy is all the teething). She's crate-trained, Dagny helps by taking her outside to relieve herself (Hope will always follow Dagny outside, and Dagny obliges me by going outside way more than is necessary for her). Since we have a puppy pen and a crate, my elderly pets get plenty of quiet time...and the extra trips to the pet store have supplied them with more new treats and toys than they have had in a long time. Dagny is getting more walks, baths, and all of the old pets are getting more affection (if that is possible) because THEY aren't crazy or biting us. It took only 6 days before all the pets seemed to be happy again and were sleeping with me at night.
Hope, for her part, has a household with plenty of companionship, room to run, and people to train her. She's got a few years before the spotlight will be all on her...when we are going to need her to be the pet we hug and snuggle with when we have to go through the inevitable loss of our more elderly family members. In the meantime, she's just a cute, cute puppy - complete with puppy kisses and wiggles, and all the joy and excitement that new life brings. She's a pretty constant reminder of how we chose, in the middle of a fair amount of chaos, to add HOPE to our lives! (Isn't it a great name?)
11/7/08
I am enjoying myself at Spa Beaumont. It's not terribly pretty here, but I've got pain meds on board, people to help me, and no responsibility - the recipe for a pretty great night! Plus, my sister stopped over for a while and we had an uninterrupted conversation (a precious commodity these days). What more could a girl want?
My nurse has been kind, the medical assistant is even nicer (not to mention terribly handsome)! I have entertainment - people walking down the halls (I flash them my winning smile and judge their reactions), and my next-door neighbor had some sort of plastic surgery on her face. All of her friends are commenting on light topics, like
how much weight they lost, or admiring her Gucci bag. It takes all kinds to make this world an interesting, lively place!
Oh, yes...and the surgery went well. There was minimal scar tissue, my fabulous MD was able to make a smaller incision, and it only took an hour (was booked for 1.5 hours). I'm spending the night for the IV antibiotics, and then I go home tomorrow a.m.
Sent from my iPhone
11/5/08
Lucky Girl
I still get cranky about broken vacuums. I know I'm hard on them, what with the 7 pets, 3 children, an outside-time obsession and my interest in keeping my feet dirt-and fur-free indoors. Alas, I think our 3 vacuums have had enough, and I didn't use my luck and prayers to ask for them to work longer. So, broken vacuums and crankiness...but then I decided to focus on the ways I have been lucky instead.
Today's list: How Lucky Pam has Been (even when she didn't know it)
- I was lucky to meet my husband...and lucky that he didn't listen to me all those years when I told him to find someone better. Really, who would stick by a person for 7 years, listening to that (before something like marriage or a formal engagement was forcing him to)? He has proven his devotion to me and to my family, time and time again, even when I am bald, deformed, calling him a hundred times a day, or asking him to change another poopy diaper.
- I am lucky I followed the urge to have my children when I did. I didn't think so at the time, as I didn't know anyone my age with babies and felt like a bit of a pariah on that front. I even surprised myself and Bill with the urge - a sort of the heart-leading- the- head scenario ensued each time as Overachiever Pam who so wanted a great career gave way so that this totally New Pam could take over.
- I'm lucky I had that fall in the basement and found my breast cancer when checking myself to see if I had healed.
- I'm lucky we moved into this house when we did. It has the perfect amount of space and a separate living quarters which has allowed my sister to bring her baby and help keep my family running every time I am recuperating from something.
- I'm MORE lucky that I was given such loving sisters. I knew they were giving, caring people, but I did not anticipate or expect A to be driving back to MI with her little baby in tow each time I had something hard to go through! And I did not anticipate J flying her family here twice and spending both her and T's PTO visiting her dilapidated sister.
- I'm lucky we decided to stay in Michigan and raise our family here, against my desire to move to other places and see how other people live. We live so close to so many family members who have been our support through this year - my mother-in-law, my stepmother and father, my aunts and uncles, Bill's family.
- I'm lucky to have the friends that I have...crazy lucky, as I am not so good at staying in touch. Plus I did start this family a little earlier than some, which kept me busy in a different way. I'm still amazed that I have any friends, I feel unworthy..and then to have such kind friends humbles me even more.
- I'm lucky for my pets, and for Bill's tolerance of them. They are such fun diversions, even if they are a lot of work. And now I have to go back to the task of getting them all ready, cleaned up, and prepared for me to be out of commission for a few weeks!
11/3/08
No Rads
He said everything we've been told all along (actually, he said it would be of about the same benefit to me as if Bill had my radiation for me, which we thought was very funny). Because I was a Stage I breast cancer with no lymph node involvement, the only real indication would have been the very small margin near the chest wall (you want good, big, clear margins). Since the surgeon removed the fascia and it hadn't been invaded by the tumor, my risk there is not a big risk.
I have the feeling my breast surgeon wanted me to see a radiation oncologist because she has a protocol she follows now when women are diagnosed with breast cancer (which maybe she wasn't following as closely almost 9 months ago when I was diagnosed)...telling people to see her, a medical oncologist, and a radiation oncologist. Both she and the medical oncologist were almost positive I would not require radiation (and they are all at the same tumor board meetings, so I am sure their guesses had a lot of experience behind them) but she wanted to be sure.
Anyway, now I have the name of a very wonderful radiation oncologist, just in case someone needs that someday! Also, I heard from him something I hadn't heard otherwise (just another something that probably slipped through the cracks somewhere)...the best way for me to monitor recurrence in the very small amount of breast tissue that could be left is to do self exams every month. I should also have a professional do an exam every 3 months.
Monthly self exams can be every girl's friend - whether or not she's had a bilateral mastectomy!
So, all systems are go for my 4th surgery of the year...scheduled for this Friday.
11/1/08
It's not so bad
Writing helps, but I can barely write as I'm frustrated with my chemo brain. I feel a little bit like I have ADD - I want to keep plugging along at one thing but then something distracts me. With my writing, I can't get to the nice tidy place where all my thoughts are complete and concise. It doesn't help that the computer is in the same room with 4 kids, the UM game on TV, I'm thinking about where the puppy and pets are, and my husband keeps checking on me - "Are you ok? Are you ok?" I had a pretty good-sized breakdown two nights ago (lots of crying - probably more than I've done this whole 9 months together), so I have a feeling he's not going to leave me alone for a while. I'm also not getting any quiet time until I have this surgery, so I either have to perform in the midst of the chaos, or look forward to the surgery!
It's pretty crazy if you look forward to getting to the hospital, to anesthesia, and even to the pain that comes afterwards because it at least gives your poor addled brain - and your motherhood - a rest. With the craziness of this year, though, that's about the best rest I'm going to get! Anyway, I'm looking more on the bright side today. Here's a few quick positive thoughts, to keep it going, and get them off my mind:
- I can't really help that I have the BRCA1 mutation, or that I had breast cancer, or that I have elevated risks of all sorts of cancers for the rest of my life. The only thing I can change is how I use my time while I have it, and how I embrace challenges. If I have a shorter time, or more health issues, I want to at least be able to say I have taken as much happiness as I could have. Focusing on how much things suck doesn't accomplish that.
- It's normal to cry, to be mad...and I'm glad I did write about it so that I'll remember those emotions someday. I will probably meet someone else going through these challenges down the road, and with my propensity to move on and never look back, if I don't have a record of having had some issues with this challenge I might not be the best supporter for the next woman facing bc, or brca mutations, etc.
- Of course I should miss how easy things were before - getting dressed without fiddling with breast forms, having hair, not worrying about surgeries, pain, cancers coming back. I was jealous of all the moms rushing around for Halloween who don't have these worries, jealous of the me I was only last year. That's ok, I'm not going to beat myself up for it. I also remember that I didn't find my life particularly easy last year, either...I didn't know how lucky I was. I think it is human nature to rise to the occasion, though, and I have risen this year! As a result, I don't normally find things harder than I thought they were before all of this.
10/31/08
Here we go again
There is something about having done this particular surgery before, and the fact that there is no actual cancer to get out, that is making me really upset about what is to come. I'm not happy about the drains, and the pain, and the constipation from surgery, and being so out of it for all of those days (I can't even remember the days after my mastectomy...I guess I should read about it here in my blog).
I'm also becoming violently angry at my breast surgeon, for telling me I should have seen a radiation oncologist now, 7.5 months later, when she SO CLEARLY told me I would not need to see one. I'm pissed off that I am scheduled for surgery, checked in, have spoken with registration and the anesthesia department, and on Monday I could get a recommendation that means I should not even have this surgery (which I don't even want).
So I am afraid, and I'm tired of surgeries, and maybe I shouldn't even have this one, what if I need radiation? BUT, I am SO TIRED of my f-ing breast form. I am tired of these mastectomy bras. I am tired of all of this stuff, and I just want to get through it as soon as I can. I'm never going to want or actually need to do this surgery, so I might as well get it done while I already look like shit and cancer is affecting my whole life. Also, even if I need to do radiation, which I won't know for a while, I refuse to not try for the implants again. There is risk of failure of the implant if I am radiated on that side, but I'd rather take that risk than decide right away for a tram- or lat-flap breast. If I am freaking out about a 5 cm incision on my right side, how much worse would a tram flap or a lat flap breast be! Horrible.
I know there are so many more important things to think about - how lucky I am that I am alive! How lucky I am that my prognosis is good! How fun everything can be! But for once I just can't get up for those things. For once I am feeling terribly unlucky, because so many other people don't have to deal with all this crap. I know I used to be a parent who was thinking about trick-or-treating and whatever else, the daily annoyances of stay-at-home motherhood, but now every other thing takes a backburner to me getting my family through yet another sucky thing with minimal impact on them. And I know I shouldn't be, but I'm just a little bit bitter and on edge.
10/29/08
Overwhelmed by cancer world
And oh my goodness, am I so worn out right now. The MD told me I should have seen a radiation oncologist. What? Don't you remember telling me I wouldn't need to see one? Don't I remember my oncologist telling me I didn't need to see one, either...something small like a bilateral mastectomy and 6 rounds of TAC...meaning radiation would be of no real benefit? So now, 9 days before I am about to get an expander put in, I may need to see a radiation oncologist, who might say I need radiation, which means I would maybe never get to be put together that way after all?
So then I went to S's chemo, which was like a bright spot, because she was beautiful, and composed, and fun-loving, and wonderful. She made friends and took everything in stride. It was fun to spend the time with her...though there was a glitch. My husband by that time was FREAKING OUT about this need to see a radiation oncologist and insisted I go stalk my oncologist and ask him what he thought.
I was so not into doing that. I like to have appointments, and feel like I earned and deserve my face time with a physician, not like I am stealing him away from other people who need him. But Bill was probably not going to let me back into the house if I didn't stalk him, he was so upset. So I stalked, and my MD is so great he put me in a room and told me what he thought. So that was sort of like appointment #2 for me today (totally unplanned).
Then I went back out to sit for a while with Sybil, and I went out to appointment #3 - a follow-up with my gynecological oncologist. Also a lovely person, he spent lots of time with me, and we discussed the radiation oncology stuff, he gave me names, etc.
I was all fine and dandy in the middle of all of these appointments, but now that I am home I'm tired of cancer.
Katie said...
"Mom, do you care about clean water? And do you care about health? And do you care about nature? And do you care about reading?"
And I said, "Yes, why are you asking?"
So then she said, "Well, then can you please put some money in here?" (Her Trick-or-Treat for Unicef box)
So if anyone else wants to put money in here, or join our team for easier trick-or-treating for Unicef, please do!
10/28/08
Decisions
Also, the fact of the matter is that my life is changing back to what it was before, slowly. Eventually what I put here is not going to make people worry or sad, or even interesting. It's going to be boring, and so I'll lose readers for just that reason. Yes, I have some surgeries and endless doctor appointments, but those have become pretty routine for me by now. Yes, I am going to live with cancer for the rest of my life (hopefully not with a recurrence, but I doubt the fear of that will ever go away). I've gotten to the place where generally I am ok with that.
Cancer is not as scary a word anymore for me....and this is cliche, but I am more concerned with finding joy and living well than worrying about my cancer coming back. It seems to me like you are given at least once choice when you have cancer - and that is whether you are going to let it take your life away, or whether you are going to let it change your life for the better. I'm going for the latter option. Even if it kills me someday, I want to know that I did everything I could to make my family and myself happy and brave in the process (and if I can help one other person besides my little family in this, it is also worth it to keep this blog going).
So I said a really stupid thing 3 years ago, but that was a girl who was a relatively new and overworked mom of 3 small children, and certainly not a person who was actively trying to find the good in the world instead of dealing in mostly minutia. I was just trying to get by, to love my children, until I could go do something to better myself. Now I realize I am supposed to find ways to better myself now, to find that joy now, to take what has been given to me and to capitalize on it. No, I don't yet have that career I have always wanted to have, but there are opportunities everyday to do something meaningful if you look for them.
I try to let comments just slip past me without getting too worked up about them now...or I just find them amusing. I remember when so many things seemed worth my emotional concern and effort, but now I basically feel like I have only one main emotional concern and effort, and that is doing everything I can to stay alive and love my family and see them all grow up and have happy lives. If someone says something that might have annoyed me in the past, it probably would amuse me now and even make me love them more for being so cute and wrapped up in smaller issues. I would even be glad for them that they didn't have to save up all of their energy and emotion and luck for one big thing like me - that my cancer won't come back.
So if you are still with me after this long diatribe, know that I'm nothing special, often rotten like a tomato in my garden that got frozen and rotted before it's time. Somehow I just got lucky to find a husband who loves me despite my many terrible faults, and kids who are the same. Tonight E wanted to email my poor maligned friend to tell her how sorry her mom was (because I tried to use my mistake as an example of a horrible thing a person can do, and how wrong that was)!
OK, bedtime. Let's hope I don't waste another day mostly in misery, as I have two doctor's appointments for myself, with S's chemo sandwiched between them. I'm going to be at the Rose Cancer Center off and on for about 6 hours tomorrow!
Hating myself
- Writing helps me to think through bigger issues which I otherwise might just bury and leave until they rot. I needed to get down to business and process a lot of thoughts, so I started writing.
- I couldn't stand calling people and explaining all of the stuff that was happening to me - I hate the phone, and even more, I hate going through my feelings (thus the writing to get over them). I couldn't take talking about my feelings OVER and OVER again, as I would have to in order to inform interested parties in our situation.
- I like writing on the computer because I can edit my thoughts while putting them down, quickly. I like clicking on "publish post" because it makes me feel like I dealt with my thoughts, and there they go!
- I couldn't imagine that there would be anything wrong with sharing all of my information, because I have diarrhea of the mouth in person or on the phone (which is why I hate talking on the phone and am nervous about conversations in person, also). I couldn't imagine sharing something I wouldn't share in person, and I might even represent myself better if I was writing and editing before I click "publish post".
- After a while, people told me that the blog helped, so I didn't mind other people reading it.
Well, I made a big mistake. There was a time when I had a private blog (private because no one knew about it, but this was about 3 years ago and I wasn't smart enough to make it entirely private, and then I forgot about it), and I wrote something which I didn't mean to me unkind...but it so comes off that way. And, as these things go, a dear, kind, wonderful friend found what I had written in this online "journal". I feel like publicly flogging myself.
I am stupid, but was probably more stupid then. By 2008 I have read enough blogs to know that people say stupid things and then they get hated for them. I couldn't imagine that I would be one of those people, not because I thought I was better, but because I thought I was invisible and unimportant and my thoughts wouldn't be found...but also because I thought I didn't ever write anything mean. Well, I thought wrong.
So anyway, I am trying to figure out what to do with my blog...and I'm not asking for advice. I'm especially not looking for consolation. About the only thing that would make me feel better would be if people wrote down everything nasty they have to say about me so that I can be punished for hurting a very dear person. One of the nicest people in the world, actually. Someone who would do anything for a friend, and who has. Someone who felt like a sister to me, so much so that I said something that only a sister would feel comfortable saying about another sister.
So I'm just here, hating myself for being stupid, again. Some things never change!
10/27/08
Loving...and not loving
In other news, Sybil could not start chemo today. The appointment was scheduled for the afternoon but the infusion will last so long it needs to be a morning appt...as she will get hydration before and after the chemo drug infusion. So we are going to have another go at it on Wednesday. And just to be proactive, we scheduled the next 5 treatments for Sybil for first thing (for the Dr.), every third Wednesday at 9:30am.
Sybil is amazing, didn't seem to be as pissed off as I was that she had to sit and wait for about 1.5 hours, get her port accessed and blood drawn, and NOT get her chemo today as I would have been. I would have probably gone crazy, but she was a cool customer.
So more updates will follow....I need to go to bed to be ready for early morning puppy potty appointments!
10/26/08
Hope
We've been thinking about getting a puppy for a while. Yes, we have a million pets! They are all becoming senior citizens, though - Dagny is 11, Maddie is 14.5, Annie is at least 13.5, and our remaining bunny, Phineas, is 10. Those are some old pets! So we wanted to bring a little life into the roster, while Dagny is still not too old so that it would drive her crazy (and D could use a diversion)...someone who could help us (hopefully way down the road still) when we lose our darling old pets.
I had Irish Setters growing up, and finding this puppy was a whirlwind. First we got it into our heads, then we found one in California and I whined for Bill to let me fly out there in mid-December to pick it up. Last night he found this litter in Lansing, and today we drove there and returned with our new girl.
So crazy. Yes, I have a surgery coming up in 2 weeks. Yes, Sybil is starting chemo TOMORROW. But we have had a crazy year, and sometimes you just react to craziness by being crazy.
But seriously, I have three of the most gentle kids ever (at least with pets, if not each other)...and this puppy has the potential to be THE puppy they grow up with. And sometimes, you can't just let cancer dictate your whole life. I think a part of us did not want to make everything wait because of cancer (and hey, at least we didn't find a puppy before chemo, like we were considering!).
Wish us luck! Actually, don't. I'm saving my luck for bigger things...and I think this is going to be fun!
OH...and we are thinking we'll call her Hope.
10/23/08
Mrs. Lucken is sick of hats.
And this is horribly snotty of me, (but why not let it all out, I'm cranky) but people care too much about their hair/appearance, when really that is such a stupid thing to worry about. Are you a nice person, are you spreading sunshine (not me, tonight, I'm cranky), are you doing your part to make the world a better place (even if it is just a small part)? That's what I want to worry about. Hair is just hair.
Of course, this is just me, writing in the quiet and comfort of my own little sanctuary. It's not so very bold to drive around in your minivan looking like G.I. Jane or Sinead O'Connor; it would be more bold to get out of the car and walk around that way. I think I am almost there, though...so if you see me walking around with my bald head, you will know why. I'm sick of hats, and sick of caring about my hair or lack of it.
There's just one problem. It's cold outside! I think I need a hat...
UPDATE: I just asked Bill and Emma if it was too early for me to start going around with my head like this and Emma said "Mom, you're really taking advantage. You find one speck of hair on your head and you start going around bald!"
Wondering
Why am I sleeping better at night?
Those are two things I did not expect to happen after I was plunged into complete menopause...though I was definitely there already, I thought it might be worse after the surgery.
Other questions:
Why can I not stop eating chocolate, and why is my mood just a teeny bit wackier?
(Those are things I guess I would have expected...but why some symptoms and not the others?) It's all right, though...I've got so much experience at dealing with wacky moods and eating lots of chocolate.
Anyway, don't tell Dr. Field, but yesterday I managed my mood by going running. I think the lack of activity was driving me wild. A person can only read on the internet so long before she loses it and wants to move her body furiously! While running I pondered this thought - why does running feel so much better at 35, after abdominal surgery and a summer of chemo, than it did when I was maybe 20 years old, a consistent runner, and had nothing better to do the summer I lived in France? It's all in the outlook, people. It's the outlook, and also this: it is fun to break rules. I didn't bleed to death last night and was comfortable the whole run, so I'm not worried that I pushed it too hard. Today I'm taking it easier, which seems wise, (I like to break rules but I'm not totally deranged) so Bill is managing my wacky mood by taking the kids out to dinner, giving me some quiet time at home (which I love).
On a side note, we are getting ready for chemo around here AGAIN...but not my own. On Monday I head back to Dr. M's, this time to be a cheerful soul while my mother-in-law starts her own chemo regimen. I'm putting all of my experience to use way too soon...setting up the acupuncture and healing touch appointments, getting out the heating pads, making up a cozy bed, making up a grocery list filled with fluids, yogurt, and laxative-like foods. We could use all your best wishes, starting Monday at 2:45pm! I'm really nervous for her (maybe that is another reason for the chocolate ingestion and crazy energy?)....
10/22/08
Today after doing more good work in this department, I was praising him for his efforts. It must have sunk in, because about 5 minutes later, out of the blue, he said, "Thanks a you bein' proud a me."
My Cubby Bear is growing up!
10/20/08
My husband, the breast cancer nerd
Here are some things which have alerted me to this new status:
- I once called him (at work?) and he was listening in on a conference call about the latest in triple-negative breast cancer research.
- He is calling and emailing top researchers and using their first names when discussing them - "Constantine said this," etc.
- He made me pick up extra copies of all of my pathology reports, purely out of academic interest (so my oncologist said...). I thought it was facinating to know the size of my ovaries, the length of my tubes, etc. (and to note that they were totally cancer-free!). He is practically combing the report for interesting facts, though.
- He is making spreadsheets about the optimal vitamin/supplement regime I should be following...not calling them vitamins or supplements, though, calling them CAMs (Complementary Alternative Medicines).
- He likes to be at every oncologist appointment - mine or his mother's. He emails me a lengthy list of questions if he can't be there. Today he wanted to know about Lympocytic Infiltrate in my breast tumor and Central Fibrosis in the tumor. Dr. Margolis again feels that these are purely academic questions, (driven from hours of research) as I am "cured" and shouldn't need to know this. Already all of our MDs have asked us what our professions are because we tend to use medical terminology for everything. No, it is not professional. We are purely amateur cancer geeks (and mostly he is, I just do what he tells me to do, and if I want to learn more, I ask him).
Breast cancer research is his favorite hobby!
10/19/08
A busy weekend...
On Sunday after soccer game/church, we visited Westview Orchards. We definitely had our fill of apple products, and we almost spent enough time with farm animals to satisfy my needs. Almost. I really need to get my own farm!
The outside/farm time spurred some leaf raking activity at the Lucken household... I am crazy about fall chores, and determined to play around in the yard as much as I can in between all of these doctor's appointments/surgeries! (Tomorrow I go for my Zometa infusion...next week I meet with the breast surgeon and the gyn. oncologist for follow-ups, and if everything goes right, I should have my next surgery November 7th to put a chest expander on the right side. I'm not excited about the flurry of appointments and surgeries again, but it is good to progress.)
I uploaded some new pictures of our fun on Flickr...You can see them if you click on Fall Family Fun, under Favorite Family Links (how is that for alliteration?).
10/17/08
Look what my little sister is doing tomorrow...
It means so much to me that she is doing this walk, and that her friends have been kind enough to support the strides she is taking against breast cancer. Emma, Katie, and Nathan are so lucky (as are Bill and I) to have family and friends willing to donate their time and resources towards the study of this disease! We love you, Julie!
Putting on God's whole armor - special prayers and thoughts today
But, especially on my mind today is Cari, a very funny and wonderful mother-of-three who lives in Minnesota. She and I have been in contact through our blogs a bit, and it is so nice to know her.
I am sure God will keep her and his family close to him through all of their challenges, but can't I ask for just a bit more - or a lot more - the "complete and total restoration of her health"? (A woman I met in the Ikea parking lot a few weeks ago told me she would pray for this for me.)
Bill and I are sending all of our thoughts, hopes, and prayers to her and hope you will, too.
10/16/08
Quick notes!
But, some thinking and mental recall needs to be done - if only to keep track of this crazy year for myself! SO I am going back to quickly writing things down to get them off the smaller-than-ever brain.
I am so amused that a person can go home directly following surgery. That post-surgery haze when I am feeling like I am operating fully, but then realize later I don't remember what the recovery nurse looked like, how I got my clothes on, and all of my discharge instructions (guess who thought she was supposed to take OFF her steri-strips? Someone who will have slightly larger scars than she would have otherwise! But I don't mind. I AM glad to be off the killers of pain just so that I can make better decisions from here on out, though!) Remind self next time, Pam - bring a tape recorder, or at least 2 extra people to the discharge instruction! It is too much for just me and my loving and totally-stressed husband to handle!
My incisions are tiny, like 1/2 inch or so...two on my left side and one on my right. I believe the top incision on the left is where the camera went in. My abdomen is still swollen, but things are all working properly. I was speaking to dear chemo buddy Missy today, and she joked that instead of sending flowers following a surgery requiring general anesthesia, we should send Miralax and prune juice!
For about the past week I have been almost entirely consumed with my bowel habits. Lovely, isn't it? First, I was worried about the Great Bowel Cleanse of 2008, which was totally easy. (Ellyn, you were totally right...the Gatorade/Miralax mixture was not bad at all.) Since I generally tend to use the bathroom more than anyone I know (is this sharing too much?!!), it wasn't even much of an increase in output. Post-surgery, I have been concerned with my regularity as if it was my job, and working non-stop to ensure the success of that mission. Mission Accomplished!
Here are some other funny notes to self about the week -
- I had a burst of energy and was bossing the family around, making them get their stuff together, rattling off information, etc. and Emma indulgently smiled at me and said, "You ARE back to normal, Mom!"
- Yesterday, after quite a busy day of being both Dad and Mom (though he had quite able assistance from my sister Amy, and even a little from me), Bill was totally wiped out! He was lying on the couch, telling jokes, and not able to move. He kept saying that his internal clock had gone off, telling him it was time for me to yell at him, and he didn't know how to function until it happened. Poor husband!
- Why is it that the fleeting absence of a fairly constant physical pain can bring out such delight? If I found a good position and the pain subsided for just a minute, it was like I was in heaven! You'd think I'd still be in pain mode, but no...I sometimes find myself just so in love with life right in the middle of it all. The juxtaposition of pain/no-pain can bring out happiness so readily, where regular life's lack of this juxtaposition just doesn't always bring out that high.
10/13/08
Pam is laparoscopically ovary-free..Yay!
I'll be interested to get the specifics from Bill as to how long I was in surgery, when I came out, but I know I was on my way home at 12:10pm because I updated my status on facebook at that time!
I had a good nap, some great conversation with my sister (as usual), my house is tremendously clean, we have clean laundry, we are fresh off a great weekend of fun because Jeff and Bonnie and Paige were in town...all in all it has been a nice day!
I'll write more when I'm not totally loopy from the drugs!
10/10/08
Check in for my ovaries to check out: 6am Monday morning!
So here is my personal discussion with my soon-to-be-departed body parts - "Goodbye ovaries and tubes! Thanks for a great working relationship over these past 35 years. I could always count on you to work the second I felt like having a baby (or even when I wasn't quite planning on it, as in the first time around)! I'm thanking you in advance for not being cancerous yet...I hope I'm not going to have to retract this statement in a few days!"
On another note, I tried to make Bill promise me that if I'm healthy and happy in a few years and start missing my fertility, I could adopt a baby. This is a far cry from the Pam he dated who for about 6 straight years told him to "break up with me, I'm never having kids." Isn't life so funny! Anyway, he knows exactly how to play these cards...he says ok (or in this case, handily averted promising anything) and lets life take its course.
There are always options, though, if I do wish I could have another baby. I'm writing them down to read in the future if I feel that craving:
- Be glad I have the 3 that I do! Mother them even harder. (Ha, like that is possible. I'm the classic "helicopter mom.")
- Steal my nieces and nephews. By the time I am out of the cancer woods, there will be some more babies and maybe their moms will let me steal them! And if I can't steal them forever, maybe I can steal them for a weekend or so here and there while their parents take vacations.
- Convert my crazy house into an in-home daycare. I have the toys and the space...but the structure of that kind of life might kill me, so I am striking it from the list.
- Become a teacher. I may never get a job, though...at least not in Michigan and I don't think my husband and children would appreciate it if I move out-of-state without them (it would sort of ruin option number 1, also).
- Get more pets. HA HA HA! I put this in here to drive Bill crazy.
10/9/08
Here are some very pretty survivors...
(I ignored the fact that they started out being more beautiful and talented than me, when I told the girls I expected to come through this year just as well as the superstars did...ha ha!)