Last year, Emma was one of the highest fundraisers in her school for Jump Rope for Heart, a fundraiser benefiting the American Heart Association. This year, Katie has a chance to try her hand at the Jump Rope for the first time.
If you would like to donate to Katie's big jump, we would love it! This website takes credit card donations in amounts larger than $25 (what is up with that? I think a lower minimum might be nicer)...but if you would like to donate we are happy to accept any amount! (Mail it to me, or drop it off...)
Since my breast cancer diagnosis in February of 2008 (11 months ago), my husband has become somewhat of an avid reader of breast cancer research. That is putting it mildly...he is always telling me about something new - whether it is something about my own situation (triple negative breast cancer, BRCA1 genetic defect, non-basal breast cancer, or just plain old invasive ductal carcinoma) or something pertaining to breast cancer in general.
In general, we are reading things that are a bit more specific and scientific...by now we aren't swooning every time we read somethng in the local paper, on msn.com, or in other mass media publications about breast cancer. There are so many places to find information, and so much weeding through needs to be done to get to the basic, nitty-gritty facts. Where can you go for news that is up-to-the-minute, scientifically precise and accurate, and with good recommendations for my unique type of breast cancer (because everyone's breast cancer has so many unique variables, it can be confusing)?
From all of these months of research, this is our very favorite site: http://breastcancer.evidencewatch.com/
The medical researcher who put this site together is an amazing man (one of our cancer heroes) - composing documents on effective CAMs (Complementary Alternative Medicines) based on hundreds of research articles. His advice has led to a pretty decent daily dosage of vitamin supplements for me, and he has had an opinion on every question my husband has ever come across.We love doing whatever we can do to prevent a recurrence, and feel lucky to have come across this website, and this very knowledgeable individual!
I didn't even care about my future size, or give ANY input into that process, either, except to say I was happy with whatever he thought would look best. After all, he's a PLASTIC SURGEON. His job is to reconstruct things to make them look good. Isn't a professional at looking good better at making that decision than a girl who tries not to look at the mirror at herself (even before breast cancer)?
I didn't even ASK the size, until my follow-up appointment today, and only because I thought I should know in case a future breast cancer survivor wants to know. It's a bit bigger than I expected, but again - I wanted him to make the decision, and I am happy that he did. Let the expert do what he does, and I will do what I do best (and that is not care about my breast size).
Anyway, today I looked up some reconstruction photos to gauge how I feel about nipple reconstruction. After I looked up some pictures, I have this to say - I am extremely glad I did not become a plastic surgeon dealing with breast reconstruction. I can appreciate why a surgeon would enjoy being a plastic surgeon - I saw mine taking pride in his work, thinking through the problems ahead, remembering how he pulled it off, embracing the challenges, mixing science with art... I just don't think I would feel like helping people who really cared a lot about what their breasts look like. It seems totally inane to me to care about breast appearance at all.
Yes, I liked my saggy little guys, but they had been so USEFUL...feeding kids and making milk for almost 4 years. I felt a little bond with them when they went so above and beyond the call of duty in that way. But aside from that, why care about breasts at all? (Don't tell me, I don't want to know, call me repressed but I don't work that way.) Moreover, how can any woman be consumed with the idea that hers aren't good enough and she needs to surgically alter them? Now, this is after a year with breast cancer...I would guess that I am even more detached than I would have been before breast cancer, but STILL.
I would say there are a lucky few people who have "perfect breasts", and they probably only have those "perfect breasts" for about 12 years (maybe age 16-28 or so?). Everyone else has breasts in various stages of disarray, flop, nipples pointing other ways, too big, too small, etc. It seems so weird to clamor for something that almost no one ever gets.
Anyway, here I am...with what will probably be nicer-looking things on my chest than I would have ever desired. Could there be a less appreciative girl on the planet for these "perfect breasts" though? I doubt it!
(I do have to say that even if I don't feel like I need such a nice chest, I am VERY APPRECIATIVE of my surgeon and his staff for the great care they took of me, for the conversations, and for really doing their very best. But, I did choose my surgeon because he is such a lovely person...in addition to being an great surgeon!)
*the "capsule" or I sometimes hear it called "capsular contracture" starts developing within 72 hours of the implant surgery. So, I need to massage myself (down and out, down and out) 4 times a day to break down the tissue a little bit. Not on the bottom, where you might not mind having the tissue...
*I'll be wearing "scar pads" for the next 3-4 months, for as much of the day as I see fit, but at least 8 hours and up to 23.9 hours (take them off to shower). These are to make the scars flatten and to fade.
*Yes, you still wear bras with good support after surgery, even with your entirely fake breasts, just because muscle weakens and all tissue can then sag.
*I'm still in the good old shove-it-all-in compression or sports bras, 24 hours a day, for another 2 weeks.
*wait at least 6 weeks for nipple reconstruction (I'm waiting until the fall. Why not? Let's ignore the chest for a little while and be done with procedures for a bit.) After that, 8-10 weeks until the "nipples" shrink as much as they are going to shrink for the tattooing. I'm still not convinced that my nice long lines across aren't good enough.
What I want to know is, can I go into Victoria's Secret and just tell them I have exactly 450cc on each side of my chest, and will they then find me the perfect bra? Because I really don't feel like figuring out what size that is, and I'd just like to stick to the medical sizing instead of back to the world of girl sizing.
And that this person said of my husband's analysis of my breast cancer "Your analysis seems well founded"?
If you don't think that is crazy, then do you think it is unusual that he has connected with a researcher who is extremely well-versed in all sorts of CAM therapies for cancer...who apologized for not being able to send him the CAM regimen for lung cancer instantly, who got permission to share the regimen with him, and sent it to him today, apologizing again for the delay?
On a day like today, when I am being slammed by cancer world again, it is SO HEARTWARMING to see my inbox report another donation! It gives me hope that even if I have to live in this world, maybe we are all doing something to make it a less scary place for others down the line.
So thank you to Kelly, Sylvia, and Jim, who gave me glimmers of hope on this not-so-entirely fabulous day in cancer world!!!!!!!!!!!!!
On a Pam note, the swelling is going down (looks less like big giant basketballs on my chest), and my port scar area is not shouting at me anymore. My sister is back on the road to Evanston, bless her heart...taking magic baby with her (he cures all misery, at least while he is around and smiling). My kids got into a big mess of Magic Sand with their mom, which was fun...and they will probably be so happy to be getting back to school tomorrow.
Whatever this year holds in store for us, I am glad to be done with my major things so that I can concentrate on others!
And last, maybe a gratefulness note to end with, to keep my eyes to the light - I love my family!
I love listening to Nathan sing the Thomas the Tank Engine song to himself.
I also love it when I am forced to open my eyes to something so obvious, courtesy of my children. This can be either literally (Nathan prying my eyes open, or someone talking and talking until I tune in...) or figuratively (helping me see that worries aren't the only thing in the world...there is laughter, and sandwiches to make, and poop to clean up, etc.). Today we have an example of the literal opening of the eyes. I was all in my own world, researching, calling cancer centers, etc. - totally ignoring Katie who was talking and talking to me. Finally I decide to appease her and tuned in: "Mom, know why I have this bandaid on my face?". So I looked at her absentmindedly, just to make her stop talking, and see that she has the biggest SpongeBob bandaid ever right in the middle of her face - just as an attention getter, of course...such a silly little peanut that Katie.)
Anyway, I'm back to living with fear again...and I feel like I need a step-by-step program to get me through the next days ahead. I know hard things happen all the time to all sorts of people, but right now I feel like my family has been hit pretty hard by the universe in general - and that's no way to feel or to live. So Mrs. Lucken is going to try to look deeper, and live more committedly, which is going to be challenging given the days ahead.
Luckily I've got some great examples to learn from - people who have really lived their lives, set their goals, fit in hard work with lots of fun times, taken challenges and responsibilities that were really above and beyond what many of their peers might have had to face at that time in their lives. They've lived with great joy and purpose - more joy and purpose than I certainly have, thus far.
So in this period of waiting, and fear, and great love, I'm going to try harder to focus on goals, and rising to challenges, and above all, the little joys. Because again, I can't really control what happens to me, but I can control how I react to it (or at least I hope I can!).
My port (mediport) was removed, and that is what is the most painful...but it is more like a burning, healing sensation than any real pain. I'm swollen in the chest area, but that is too be expected - and more on the cancer side where my plastic surgeon had more work to do. He mentioned that with the two extra surgeries there was more scar tissue on that side. I feel almost nothing in my chest area. I wonder if I'll regain any feeling there, but I don't really care...it is certainly great to have no feeling there after surgery!
Anyway, it was another enjoyable stay in the hospital...perhaps I really enjoy drugs, perhaps I really enjoy the quiet and being waited upon, and watching television without people telling me that it isn't fair, they should be able to watch SpongeBob instead (ok, that was an amalgamation of two whiny children - one of the girls would say it was unfair, and Nathan would whine about SpongeBob). Then I would have to tell them to get back in bed, haven't I told you that 5 times already, blah blah blah. So a night away is fun. Bill is almost insulted by how much I like a night away, that I appreciate my surgeries just as a break, but it's not the night away from him that I enjoy so much...
I did have some lovely conversations with my nurses and the MA's...so much talking. I think I was most definitely preventing them from doing their jobs but they didn't seem to mind. They didn't remember me from my surgery like I remembered them, but they loved it when I mentioned details from our past conversations. I enjoyed the adult conversation in general.
I really do need to get out more.
Amy and Matthew are here...that baby just lights up my whole world with his smiles.
I do have to say that I was never worried about the surgery, even if I did go apoplectic about preparing everything for it and for my recovery. This should be the easiest of all of them - no drains, plus I know the whole drill so well by now. I will stay overnight for IV antibiotics, because there is always an infection risk.
Anyway, tomorrow should be just fine. No worries for me! nmkmhjnkl
\ tg fG (And Matthew agrees with me, apparently.)
I'm sure I might update from my favorite computer in the middle of the night tomorrow. I'll miss those late night post-surgery rambles around the unit (well, maybe not)!
So I am going to find a way to put more exciting, new, and warm things which I adore with all my heart into more of these regular old days. Wish me luck (it means avoiding snits and fitting things in when I could be wasting all my time cleaning or doing other sometimes painfully mindless things like reading about celebrities or hideous baby names on the internet, which is what I have been doing last night and today)!
Me: "Are you serious?"
Emma: "Yes...Marco Polo. It's a really fun game!"
Maybe all the Mario Kart she is playing with her father is rotting her brain.
Each kid chose their animal and color from a book, did the fingerprints, and I made the animals, cut them out, mounted them, mounted their names, etc. Such a crafty girl.
The more I contemplate, the more I am sure it is this anxiety that blew into Pam this week and shoved me down into depression world. I did not want to make time for anything cancer related, again, and had to - a fill at the plastic surgeon's office, bloodwork for my Zometa treatment on Monday, finding a babysitter for that treatment, figuring out rides for kids on Thursday and Friday next week because of my surgery (which I still have to do), sitting down to watch a stupid 20 minute video about anesthesia (great if you haven't already had 4 similar procedures in the past 10 months, annoying if you have), thinking that if I don't run today, I'm sure going to miss it for the next 4 weeks when I can't run, realizing I have just a week left before I have to be out of things again.
Oh how I hate this stuff coming back into my life again, just as I am feeling like it was a million years ago! And oh, how it doesn't matter that this is the last reconstruction (hopefully) for a long while, that it is the last monthly Zometa treatment for 3 months, that it is the last fill ever, that it is the last time I have to give up running or erging for a month (not like I am doing this all the time, but it is my safety net - I like knowing I CAN do those things if depression rears it's ugly head. I panic thinking those things are off limits.) It also doesn't seem to make a difference that I have an awesome vacation planned, will be able to buy a real bra, stop needing to worry when clothes shopping if something reveals my port, or a lopsided breast, or anything. I just hate it coming back, and can't see past to the good stuff.
But, as I said, this frustration, or anxiety, happens every time before a surgery or treatment, like clockwork. You would think I could plan for it and adjust, but I always forget it happens until it does. So then it happens, and I'm miserable, and then I realize "oh, THIS is why I'm miserable". And I'm glad to have that reason for my misery, to see the pattern, because I know what happens next and it is easier. Following the misery, I can move into total preparation mode and become that patient again. Again, let's put away regular Pam for awhile and bring back cancer Pam. It's so hard to do that, but once it happens, I'm ready to get back at it.
No-whip? Don't you know that is the 4th most important part of the drink (following the caffeine, the chocolate, and the hotness, which makes me feel all cozy inside)? How can I drink this? Well, ok...if I must.
But if I must drink this, I am going to drink this thinking that the greater universe wants me to succeed in my goal of preventing a breast cancer recurrence...and you, Starbucks barrista, are just following the universe's great plans for me. The universe knows that a low-fat diet is recommended as being beneficial for the prevention of breast cancer recurrence in triple negative disease. The universe also understands that I am trying to drop this little mocha habit of mine and wants to help me with it (even at 1-2 times a week, such a waste of money and fat calories when I could be eating peanut butter from the jar instead).
Now if only the universe could put a muzzle on me for the REST of the day...and then I would really achieve that low fat diet!
He also wants Clorox Regular Bleach, which is "useful in so many ways".
And now, again. "I want that." What this time? Charmin Ultra Strong. I even asked him: "Did you just say, you want Charmin Ultra Strong?" and he confirmed, "Yeah". He's not even potty trained!!!!!!!!!!!!!!!!!
Oh, the power of advertising! I've got to write faster so that I can turn off the tv.
I am slightly amused and slightly annoyed today about preparations for my upcoming (4th) breast reconstruction surgery. I love my plastic surgeon, I love his nurse, the staff is kind enough, and I feel lucky to be heading into a hospital with a reputation for excellence. HOWEVER, how can it be that this is my 4th reconstructive surgery, and EACH time I have been given different pre-and post-surgical instruction sheets?
I assumed - 4 similar surgeries involving reconstruction of the breasts, one set of directions. After all, the surgeon is working in the same area, doing similar things - preparing the pocket for the expanders and inserting them (surgery #1), removing an expander after it was infected and flushing the pocket (surgery #2), inserting the expander again after chemo (surgery #3) and last, exchanging the tissue expanders for actual implants (surgery I am having in one week). I'm having the same anesthesia (have to avoid the same things to prepare), recovering the same way, going to the same hospital, etc. Yet each time the information packets I receive (if I have received any) have held (or not held) different information.
The last packet of information/instructions has been the most comprehensive and informative yet. I APPRECIATE this, but am so annoyed that I did not get this same information before procedures 1-3. We aren't talking about a long period of time between surgeries, in which this information might have changed...my first reconstructive surgery (and bilateral mastectomy) was less than 10 months ago! (AND, before that surgery, I received NO information.)
I didn't go into the first surgery (bilateral mastectomy and immediate reconstruction) with no information at all; I asked many questions and thoroughly did my own research so that I felt really prepared. By the second surgery, when I did receive information, I was totally flummoxed: why hadn't I received this the first time? Surgery #3 didn't help solve that mystery - again, not much information. And now, with this HUGE packet of information (all stuff I could have written myself, as an expert by now), I'm just annoyed. Come on, people, organize yourselves!
Maybe I should become the office manager...it's got to be confusing for the staff to have at least 3 separate kinds of information to hand out for such similar procedures. Imagine...if they have 3 separate kinds of information to hand out for breast reconstructive surgery, how many must they have for all of the other surgeries they perform? To navigate that sea of hand-outs would require a compass and map.
Emma (rebutting, also loudly): "That's because she said, [now using mean voice] 'Get me more toilet paper! I need more toilet paper!'"
Bill (from the other room, playing Word Twist on facebook, as usual): "Katie, say it again..."
Katie (loud, mean voice): "Get me more toilet paper! I need more toilet paper!"
Bill (still playing Word Twist): "That's not what I meant...how about...please?"
Let me express my deep affection for you. Though you rolled into our lives with waves of vomit, laundry, and panic attacks about holiday preparations, the sea you left behind is so tranquil and calm. This past week has been so fun, with shopping excursions, fun with family and friends, ice skating galore, New Year's Resolutions...I am left feeling sorry I wasn't more eagerly anticipating you, Holiday Vacation!
Thanks for the memories*...We're looking forward to meeting up with you again next year!
*because we are left with just a normal weekend ahead of us...back to homework, school prep, the grind!
I'm sure it is my contrary nature that is making me love Michigan so much just as everyone else is trashing it and complaining about how horrible it is here. I read it in blogs, I read it in the news, I overhear conversations. I have wanted to live in another state for my whole life - to experience other things, other climates, adventures, etc. - and suddenly I am just so happy to live exactly where I am.
Yes, things could be better...and I do have sympathy and a little sad spot in my stomach for those people who have been affected by the economy. But honestly, there are so many other wonderful things about this state. Here's my quick list of WHY PEOPLE SHOULD STOP SAYING NASTY THINGS ABOUT MICHIGAN, AND NOW.
- How can anyone complain about the weather - at least in my little spot in Southeast Michigan? 4 seasons...Zone 6A-6B on the USDA plant hardiness map (the same as Amarillo, Texas, by the way...)? Come on, people, complain all you want, but the map doesn't lie.
- We have such a great mix of recreation in this state - The lakes! The nature! The summer sports! The winter sports! We can do it all here, and pretty easily. If I'm hiking on a little trail here, I'm not running into a thousand other people like I might run into on a similar little trail in California. Now maybe that is because not everyone likes to bushwack through random parts of the neighborhood (because that is called trespassing, whoops), but still. We've got great nature.
- The people! How many places in the country can you go around and have random people just smile at you and greet you - in stores, on ice rinks, etc. I'm sure people are even nicer in other places, but really in Michigan people are great - a nice mix between the cosmopolitan crowd who won't say anything to randoms, and the most down-to-earth Midwesterners who are friendly to everyone.
- The affordability! And it's even getting more affordable (there are benefits to everyone losing everything). I could never have my crazy 1.7 acres in many other parts of the country....
- Lastly, let me just say how wonderful it is to get breast cancer when you live in Southeast Michigan. I had so many options, so many great doctors, great hospitals from which to choose, all easily accessible. My top rated hospital is only a few miles down the road! That is truly number one, let me tell you, in a year when you are at the hospital/doctor's offices many times each month.