Here we go again

Last night, after I had put all the Halloween costumes in school bags and had everything organized for today (things for class parties, trick-or-treating, etc.) I went for a run. It took only a few minutes of quiet, away from the bustle of Halloween prep, puppy watching, driving kids, and worrying about my mother-in-law who was at our house recovering from her first round of chemo when I realized - "Holy *&^%, I'm about to have my chest sliced open again." It wasn't a pleasant realization.

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.


Overwhelmed by cancer world

Today I revisited my breast surgeon. I like the term "revisited" because no one told me to go to her, or when I should follow-up. I do wish I had either been given or asked for more direction from that office...I only went because I felt like I should learn how to check myself, and ask a few questions before I start getting my right side put back together in 9 days.

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...

From upstairs, Katie is asking me these questions (I'm busy getting kids ready for school so don't know what she is talking about):
"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!



I've decided to keep writing this blog, but with more of an emphasis on privacy (with regard to other people). Also, I'd like to warn people to read at their own risk (or stop reading entirely)! I'm not a perfect person, not a particularly unique person, and sometimes a downright idiot. I'm going to continue to do stupid things throughout my entire life, hopefully learning all along and making better choices after my mistakes. If I wasn't such a fireball of emotion and energy, and if I was less impetuous I am sure I would lead a much easier life, but alas, I'm not, so I will just have to do my best to make up for my terrible character flaws in other ways. I'm sure I must have a few good qualities and will just have to figure those out and use them to make up for my asinine qualities.

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

When I started this blog, I started it with a few ideas:
  1. 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.
  2. 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.
  3. 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!
  4. 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".
  5. 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!


Loving...and not loving

We LOVE our puppy! All of us are crazy about her, except Dagny (but I did catch her sleeping by Hope's kennel so though she acts ambivalent I don't think it will last long). I'm spoiling D, though, and giving the cats their TLC too. And ALL of them (including Phineas the rabbit) are showing Hope who is boss - all of them! It was hysterical to watch my arthritic rabbit give Hope the business!

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!



We decided to welcome some sunshine into our lives...and here she is:

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.


Mrs. Lucken is sick of hats.

AND...I have enough hair. Not enough for regular people, but enough for a girl who never liked to have a thing on her head before this spring/summer. I've been driving around without hats on, sporting my own G.I. Jane look (but only the head, not the body!) It horrified Emma when I picked her up from school that way today, but I'm 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!"


Why do I have less hot flashes after having my ovaries removed than I had when I still had them in?
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?)....


We've been having a teeny bit of potty-training success in the Lucken household. How, you ask? With bribery! I don't know why I didn't try it earlier...it's the only thing that works for any of us. Anyway, Nathan has been coveting little Thomas the Train collectibles since his birthday, and I promised him one if he went potty. So he went that minute...not even a delay.

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!


My husband, the breast cancer nerd

In case any of you thought my husband was just a loving dad, a funny guy, a regular old sports affectionado - nope! Lately my overwhelming thought about Bill is that he has become a cancer nerd. (I hate the term "nerd" or "geek", having prided myself on high academic performance in the past...but what other term could I use here? I don't want to say "intellectual", though he is a smart guy, I don't think he would call himself that yet. If after reading this post, you have a good term for me, send it my way!)

Here are some things which have alerted me to this new status:
  1. I once called him (at work?) and he was listening in on a conference call about the latest in triple-negative breast cancer research.
  2. He is calling and emailing top researchers and using their first names when discussing them - "Constantine said this," etc.
  3. 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.
  4. 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).
  5. 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).
SO, should you ever find yourself with the BRCA-1 genetic defect (you probably won't, I've seen numbers as low as 3.3% of people diagnosed with breast cancer have the BRCA-1 or BRCA-2 genetic defect), or should you find yourself with triple negative (ER-, PR-, HER2-) breast cancer, (also less likely, only 15% of breast cancers), and you want to become drunk with information, call my husband.

Breast cancer research is his favorite hobby!


A busy weekend...

We totally took advantage of the fall weather and the fact that I' m pretty well recovered from surgery by doing some fun things together as a family this weekend. In between soccer games on Saturday we visited our new favorite place, the E.L. Johnson Nature Center. It has been so highly recommended to me, and I am now crazy about it. (Tame deer, clear water, nature paths, so close by...wow.)

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?).


Look what my little sister is doing tomorrow...

Julie just found out that the American Cancer Society "Making Strides Against Breast Cancer" Walk was happening this weekend in San Francisco, and signed up. Natalie is going to join her for part of the walk!

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

There are so many things to hope for these days...and so many people who could use prayer.

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.


Quick notes!

It's hard to write when one's already-chemo-addled brain is ALSO on painkillers...hard to even think, really. I do find it such a shame to have my little brain trying to work so hard and getting so little done. Happily, I am on the mend and off the killers of pain, so I've got a better chance of saying something lucid. Good thing, because there is nothing like knowing your plastic surgeon and pediatrician (and their wonderful staff) have seen your blog when it comes to feeling writer's block!

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.
(And now that I am reading this over, I put those two separate thoughts together and make a discovery! It was the absence of a fairly constant emotional pain in his rear end - me - that put Bill over the top with bliss so that he couldn't even function! I would try to leave him alone more, but he is now used to a certain amount of stress, apparently.)


Pam is laparoscopically ovary-free..Yay!

I have three new small incisions on my belly, and 2 less ovaries! The ovaries looked normal but they'll be sent to pathology anyway.

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!


Check in for my ovaries to check out: 6am Monday morning!

My procedure is scheduled for 7:30am on Monday morning...but I check in at 6am. That's nice since the Great Bowel Cleanse of 2008 will probably have me pretty hungry and thirsty on 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:
  1. Be glad I have the 3 that I do! Mother them even harder. (Ha, like that is possible. I'm the classic "helicopter mom.")
  2. 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.
  3. 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.
  4. 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).
  5. Get more pets. HA HA HA! I put this in here to drive Bill crazy.


Here are some very pretty survivors...

MSN did a gallery feature of some high profile breast cancer survivors... I have to say, there is a very big plus to having had this particular diagnosis now, at a time when people are so open about breast cancer. I was able to show my girls pictures of Kylie Minogue, have them watch Sheryl Crow sing, and tell them, "See, she had breast cancer, and look how beautiful she is, and how well she is doing!

(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!)


OK, so I'm not so energetic

Something about spending a good part of my day arranging surgeries/driving to and from dr.'s appointments, etc. just saps the energy right out of me. Yesterday I did labs and an EKG and a chest x-ray, with the requisite waiting for each stop. Today I met with my plastic surgeon to discuss my next reconstructive surgery (assuming everything goes well on Monday with my lap bso...I just like saying lap bso, I think it is funny), and set it up*. Then there was the pre-surgical phone call from anesthesiology, the shopping for the great bowel cleanse of 2008, etc. Even if one loves her doctor and nurses (and I do), all the arrangements and discussions are draining.

BUT, there are lots of good things to do when your energy has been sapped by the fact that you have to do the great bowel cleanse of 2008 (and you don't want to do it, plus I am horrified that I will have to go a whole day without real food...not to mention chocolate! I might chew off my arm with anxiety at not being able to eat chocolate). Here are the good things I did tonight: watched The Amazing Race with the husband and kids, read books with kids, played with Emma's hair (my latest craving is to do Emma's hair, because I miss my old ponytail...she doesn't mind, and in turn, she was rubbing my soft fuzzy head), and made brownies.

It ended up being such a cozy night, just what I needed. Yes, it's a boring post, but I did feel that I should record my laziness and chocolate-eating, just to keep the record straight. It's not all feats of amazing wonder around here; in fact, mostly nothing I do is amazing (except for the enormous amount of chocolate that I consume).

*If the lap bso goes well, my next surgery after that is November 7th, when I'll try again to have a tissue expander put in where my right cancerous breast once was. So a month from now, I may have two surgeries done...and only a few more to go, ha ha. (kind of ha ha, kind of sick of it all...but I know I'm supposed to be happy to be alive and moving on, and I am.)

The return of hair...is so funny

Here are my thoughts:
  • Why does hair come back in areas you might not want it, first?
  • You can barely see anything on my head...but my eyebrows are coming in (too thick and darker), and my eyelashes must be coming in because the hangers-on seem to be falling out...so I look more like a man like ever!
  • My head is so fuzzy. I love to touch it, but it still doesn't look like anything and it is still not enough hair to prevent me from all of the scratches I seem to get on my head. I had no idea that my hair was protecting my scalp as it was, but since I've been bald I constantly have scratches and bumps all over my head (from the yard, from wrestling with kids, from running around the house and bumping into things, etc.). Thank your hair for all the work it does for you! (Or maybe I should just be more careful...)
  • My hair is now coming in darker...not a surprise as the only way it stayed blonde for all these years was due to all the hours in the sun...and it's fall now with its days of less sun. So maybe as I try new hairstyles as this hair grows in, I'll also have a whole new color too!
and last...

Even though I don't feel that my newest almost-hairless look is cute, it seems like nothing can make me put on my fairly expensive wig. I've come to the place in my life where I feel like my bald head is my trophy. Hey, I've come a long way, and I might not be pretty, but guess what? I'm proud of my hairless existence. I've taken some hard steps to get hairless! My bald head and my difference reminds me of the strength I have found in myself and I like carrying that reminder of my strength with me.

At this point, wearing a wig puts me back to the girl I was before cancer, and I don't need to be her right now. I feel new and improved. Yes, I'll be glad to have some hair back, but I'm totally ok with the long process of growing it back, whatever I look like in the meantime.


Logistics of upcoming surgery

Now here is where the blog comes in very handy for dissemination of information!

I am having my oophorectomy on Monday, October 13th...this is the surgery where they take out my ovaries and fallopian tubes. Because my BRCA1 gene is defective, I have a higher risk at developing ovarian cancer so I want to reduce that risk as much as possible...removing the ovaries and tubes should help with that.

(A short aside, I'm so lucky I have all these 3 kids at the age of 35...it makes the choice to have this done now so much easier. Plus I am no longer worried about menopause because I've had chemo-induced menopause for months and it's only slightly annoying.)

SO, to prepare for surgery, I have to do a full scale bowel prep - all liquid diet the Sunday before, plus a little regimen which involves 2 Dulcolax tablets at 10am, starting at 1pm drinking 8 oz of a Miralax/Gatorade mixture every 15 minutes until the mix is gone, and then two more tablets at 5pm. So Sunday I will be in the bathroom all day!

The bowel prep is to make sure I am totally cleaned out in case this lap bso (laparascopic bilateral salpingo oophorectomy) becomes something more elaborate, like an open surgery. This would happen if 1) SCARY! They find cancer and need to clean me out and do staging, etc. or 2) I have too much scarring from my 2 c-sections to do the bso laparascopically.

A lap bso means an overnight in the hospital and about 2 weeks of recovery. An open surgery means 1) SCARY! I will be losing my mind with sadness over a new cancer, and/or 2) It will be like recovering from another c-section, except I won't have to be breastfeeding a new child at the same time. 3-5 days in the hospital and 6 weeks recovery with the open surgery.

We won't know until I get out of surgery which one I had...they expect to do the lap bso but then do what they need to do as the circumstance presents itself.

So, for all of my kind friends who have offered to help, I do have things situated pretty well for a 2 week recovery period...it helps that both girls can take buses both ways to school this fall as opposed to last spring where Katie needed a pick-up and Emma needed rides both ways. Our soccer carpool buddy is stepping up to do Monday and Wednesday rides for Emma, and Bill can do Emma's Friday pickup. My sister Amy is coming in (AGAIN! love her) to hold down the fort, do Nathan duty, and be there for the bus for the first week. Our soccer/Brownie moms have come to the rescue with some meals for next week!

We will keep everyone posted on how the surgery goes, and if things do end up being crazy, we may send out the very lovely request for help on our lotsahelpinghands.com webpage.

Until then, I'll be busy getting everyone ready for mom to be on a cancer vacation again...it started today with 3 hours of waiting for lab work, an EKG, and a chest x-ray! Tomorrow I go back to my plastic surgeon to talk about my NEXT surgery, and when (if things go well with this one) that might be. Lori said it right, being a cancer patient can be a full-time job!


I think I just kicked some serious butt...

One day, when I was working in the rowing office at the University of Michigan (long after my rowing career was finished), I said something to the coaches, that someday I would like to kick ass at SOMEthing. My former coach (and subsequent boss at UM) said something to the effect of "Oh, PC, you could kick some serious butt if you wanted to." I was dubious at the time...enmeshed in motherhood and stuff like that.

But suddenly, about 9 weeks post-chemo, I am having a problem with a significant post-chemo side effect. I have too much energy - like crazy, crazy energy. Such crazy energy that when I came home from a run yesterday, I made my whole family line up in front of my house to watch how fast I can run! They lined up chairs on our hill and I did sprints back and forth in front of the house. (Not many, but still. I have lost my mind with energy.) I'm running through parking lots, and when I ran up to the doors of Emma's school the other day, the office helper asked for my i.d. - like I was a terrorist coming to destroy the school! I guess they aren't used to bald women running up to the front doors of school everyday. People have been asking me if they can help me with something, because it must always look like something is wrong!

No nothing is wrong...it's just that I've spent the last 7 months going through breast cancer treatment. I'm so used to working so hard to heal, that when there is no healing that needs to be done, I can't slow down to anything slower than a mild trot. I'm actually looking forward to my oophorectomy in about a week...I'll be able to put all of my extra energy to good use, healing from having my ovaries and fallopian tubes removed. Until then, I just know I'm going to keep waking up each day with more sore muscles - from running, impromtu dance parties, Tae Bo kicks while I wait at the bus stop, wrestling with my children - but my body is used to such extraneous effort that it is begging me to do these things (and make a fool of myself, wherever I am, apparently).

As I learn to deal with this somewhat explosive power chemo has unleashed in me, I guess my old coach WAS right. I could kick some serious butt, if I wanted to - I think I may have kicked chemo's butt (or maybe my own, while I was going through chemo). It's good to know I've fulfilled that wish...


Answer a 5 question survey, fight for the cure

For every completed survey (only 5 questions), Purina will donate $1 to Susan G. Komen for the Cure...

(Thanks, Therese, for sending this on!!!!)


Last chance to give me $5 (but for another cause)!!!

Ha ha!
Seriously, my family and I are walking in the Down Syndrome Guild of Southeast Michigan's Annual Buddy Walk this Saturday...
We can't wait to show our support for my friend Laura ("MOM! There's a present on the porch, your friend Laura must have stopped by!") and her daughter Annie, though Emma wishes it was a much further walk than just one mile!
If you would like to donate, here's your chance!


More of Emma's opinions about her mom

I found this writing exercise in Emma's take-home school folder:

"I wish more people cared like my mom. My mom is more helpful than you think. She cares for my brother because she helps him eat and go to school and stay clean. She cares for my sister to go to the bus and eat and get dressed and go to school. She cares for my pets by cleaning thier cages and feeding them. She cares for my dad by doing work. My mom cares for me by helping do my homework and feed me and buy me things I need like clothes. My mom is so kind and cares for me so much. In my mom's free time she likes to garden and walk. She is doing the three day tomorrow! I wish people cared like my mom, then the world would be a much better place."

I have some thoughts about this:
  1. It pretty much describes my day exactly the way I did about a week ago!
  2. "My mom is more helpful than you think." !!!!!!!!!!!!!!!!!!! So funny, I didn't know people thought I was not helpful (esp. Emma)!
  3. See how proud your girls will be if you walk the 3 day?