Matthew John

Our new little baby face

Anger, but a calmer ending to the day

Well, we've come to the bottom of the "waiting for the test results" disaster, after lots of phone calls and other means of investigation. For some reason all of my receptor studies which were supposed to be started on 2/15 (date of biopsy) were not started until we dropped in on the nurse to say "Hey, where's the results of our receptor studies?" on the 25th. So we are totally madder than I can express without using all of the words I shouldn't use here and yelling my head off. The pathologist's office said they didn't get the order until the 25th, the doctor's office is saying the test was ordered on the 15th.

So right now we really hate Beaumont. We may change our minds, because we liked plenty of the people and have heard so many good things, but right now our confidence in that particular doctor, and the pathologists, is very low.

We haven't really lost any time, as I have an appointment scheduled at UM on Monday (they only schedule on Monday for their all-day clinic). I couldn't go this last Monday because I had an MRI scheduled. So everything will get to them as scheduled. I am also planning on looking at Karmanos, and they are pretty quick to get people in once all the stuff is together, which it finally is.

I really, really, really wanted to go with Beaumont from the beginning because it is so close, it's a great hospital, we had a good experience there when Nathan was so sick as a newborn. Also, though, I pretty much fall in love with just about everything at first sight (we bought 5 houses this way - just always wanted the first one). I start seeing the possibilities with the first thing I see (house, or I guess in this case, surgeon) and then it blocks my ability to be interested in the subsequent contenders. I guess this whole giant, horribly annoying snafu has opened up my eyes to the subsequent hospitals/health systems, which has got to be a good thing. Even if we end up at Beaumont, I will have given serious thought to the others.

I was so thankful, in the middle of all of this, to receive a letter from my dear friend Laurie's mom. She has said (through Laurie) that it is so important to find a surgeon you like, even if it takes some time...but today when I read her words again they made me feel ok about this giant annoyance and the loss of some days. I wanted to be meeting with the oncologist and getting going on something (I am the least patient person on the planet), but it is all going to be fine anyway.

We're already feeling better and less angry; after the many phone calls were done we all crawled onto the couch together and cozied up. It's a serious cure for emotional upset.

Tomorrow night we are heading to Evanston to see my darling sister, brother-in-law, and little Matthew John. I think a little road trip will be supersonic. We're going to our second favorite place tonight (Costco) to stock up. Like we don't own the whole store already...

My Nephew!!!!!!!!!!!!

We just got word that my little nephew was born this evening, at 10:41pm Central time! 8 lbs 6.5 ounces, with a head full of jet black hair - just like his mommy looked when she was born.
Congratulations to Amy and Chris!!!

Our weekend plans have now been completely rearranged - we are going to Evanston the first chance we can get to see our new little family member, and we can't wait.


Strange thoughts...

I've often thought it was a big giant pain to be female...Females have the babies, stretch their bodies, have the equipment to feed them (so since I did it that way, I did all the nightly feedings, etc.), and sometimes it seems like we get stuck with more than 1/2 of the cleanup of bodily functions and fluids in the family, the childcare, the laundry, blah blah blah (even if we have great male companions, which I do). The males get to be fathers with not nearly as much bodily repercussion. So NOW, I'm facing the loss of the things that make a female a female - you'd think I, of all people, might be happy about this! (Or maybe I had a premonition that it was going to really suck for ME to be a female.)

I was looking at my cat today and I was oddly cheered that if I do have the genetic marker, I'd end up just like her - spayed. I assisted with so many spays over the years at the vet offices (wanted to be the one performing those surgeries in the future until a special baby came around and changed our lives forever!), and I'd see them all wake up, bleary-eyed and a little loopy. It wouldn't be long, though, before they were coming back for another checkup, all full of life and totally fine and cute. So instead of thinking of the possibility of having the ovaries removed, (getting ahead of myself here, as usual, but I like to prepare for the worst), I'm going to think of myself as being spayed.

A little aside - Emma's class may be in the lead for Jump Rope for Heart (if her information, or her relay of the information, is correct). I know that she raised $236 that night, and she said her class raised $536. I think that is so funny! I keep telling her that her family really loves her, but that we will probably not go all out in future years (telling her we were making up for her not doing it last year, etc. without mention that people probably just feel so sorry for her!). But who knows, maybe we will. That was the cause most dear to our hearts since the loss of my mom, but I imagine we'll be splitting between two causes from now on.

We Luckens really enjoy throwing money at our problems, though. I'd like to make a reference here to the 60 inch tv that Bill went out to buy instantly, the wig, the total lack of hesitation about the genetic test - $1000 is our expense, and we have good insurance coverage! Bill is also lying in front of a brand new, crazy, giant air cleaner which was delivered today. He is happy with his recent purchase, saying "I don't know about you, but I feel invigorated right now. Look at Bear (Nathan), he is investigating the fine device." Bill wanted to take a trip to Grand Cayman before the surgery, but I have to draw the line somewhere. I plan to be around for a long time and I can't have him wasting all of my retirement money because he is a little freaked out!

Holy Cow, the Luckens are about to have an old school dance party, so I have to end this! The first song is always "Beverly Hills" by Weezer. It signals the beginning. That and the screaming from the youths!


Hugs and my rowing friends

I do not want my hugs for my children to be mystical things that they may or may not be imagining when they are teenagers, or 20 somethings, or even 34-year olds facing difficult circumstances. Because while those hugs are comforting mystical things, and I appreciate the effort it would take someone to reach from another place or way of being to hug her daughter, I would rather be able to physically hug my children when they need those hugs throughout their lives. So although I haven't decided if I am supposed to be fighting something or just being positive about it, so I am waffling between the two quite convincingly, hoping it will make me be alive until I am around 90, so I can give those hugs.

Tonight, I have tears of gratefulness for my college friends - a most amazing collection of females with whom I spent so many very early, chilly mornings, rowing ourselves to exhaustion before many people even considered waking up. I am thinking of the things we did together in that 8+ - really it was quite amazing and magical, the belief we had in each other and in ourselves, and the things we were able to accomplish and become. I'm thinking how in the really hard times, I would just focus in on Carrie or Laurie's back, or I would think about how Katherine was always right behind me (except for that one year when she was right in front of me), or how on horrible erg workouts I would sit next to Amy and just focus on her, and be as much like her as I could, and draw from her strength. I know we are all over the country (or even in another part of the world) right now, but I swear they are with me. I think of how strong we were together and I know I can be that strong right now and in the months ahead. It was such a long while ago, but those hours at that time in my life made me the best parts of who I am.

Right now I am sort of focusing in on some other people's backs (or their finishes like I did with Amy's on the erg!) - most especially Nancy's. I'm thinking of how some other strong women are behind me (not with the cancer, of course, but supportively), like Becky. I am so lucky to have so many people around, I can't even believe it. Bill keeps pointing out the silver linings (this used to drive me crazy, but I appreciate that about him now), and these people are definitely my silver lining!

But it really amazes me how much those early mornings and those friends still mean to me, and how I feel like I can do anything when I only think of them, and us. They might not even know how much they were pulling me through; how I felt like I could push myself each practice, each test, each race, just because I believed in them and felt like they believed in me. The pain, the tiredness, every single thing that was uncomfortable, annoying, or just plain hard (another piece? WHAT?) was possible because I knew they were working so hard and I wanted to either match them or work harder (probably not possible, but that was my goal, just so I didn't let them or myself down).

So now I am going back to my erg to contemplate life some more (I'm not as dedicated anymore...now I stop in the middle of a workout and write down ramblings, shame on me!) And maybe make myself so tired that I don't worry about anything tonight!

A note from Emma

This is a note that came home in Emma's folder today, with a picture of Emma and I holding hands on the top:

Mommy your a perfect mom.
I believe you can make it thought the srgrey! I will love you no matter what you look like. I bet Katie, Nathan, dad, and the pets think that to! Emma

And now I have to get off this computer!!!!!!!!! It is so hard, I have had the best emails from my old college friends, their parents, all the parents at Emma's school, the rowers...it is so hard to not write back to every single one of them and RIGHT NOW! But there is some other stuff to get done, so I will yank myself away and hope I get to it another day.

We've never been patient people...

Bill has been saying this to me a lot lately, "We've never been patient about anything, so of course we would not be patient at a time like this." I imagine waiting for test results is difficult for anyone, but I fear we are making giant pains of ourselves by calling, emailing, calling again and asking when the results will come in that will let us proceed (and meet with an oncologist, see what comes first, schedule something, etc.) But oh well.

Meanwhile, Bill is in charge of learning everything so that he can ask the right questions (he was in charge of our first pregnancy, too!) and I am in charge of keeping myself thinking positively and moving things along at home. I'm not doing a good job of my part, today! Yes, the kids are fed and the house is only a medium-sized disaster (normal), I've made calls about the birthday party, emailed, went grocery shopping, did laundry...but I am not my most fabulous whirlwind self. Oh well to that, too. I do have my hair appointment for tonight (to get my short haircut), and we should have a quiet evening so I can get back to regular things like exercising and that art project I've been planning with the kids for one week.

I'm feeling ok about everything, I'm just impatient and annoyed, but that is such a usual situation for me, it feels like I might not even have breast cancer! Lately I've been feeling like I shouldn't feel impatient or annoyed because at least I am alive and feeling so healthy (since the diagnosis I've felt this). But, I'll just breathe and put on my new state of mind again (the more thankful one).

A big thank you to our family and friends who donated too generously to Emma's jump rope for heart campaign. She was tired and cranky last night after a long day, but when she found out about the donations she was screaming with happiness. And I mean, screaming! She is definitely one who likes to follow the rules, turn things in on time, participate in everything, and conform, and being able to say that she raised this money was so special to her. So thank you!


Jump Rope for Heart - for Emma

If any of our family members are reading this and would like to sponsor Emma for her school's Jump Rope for Heart this Friday, email me and let me know. She has been so excited to do this in honor of Grandma Cathi and was not able to last year as we went to Grand Cayman the week they did their jumping. I feel terrible that I did not get all of this lined up earlier for her!

She isn't expecting anything so even a teeny amount would make her feel special! Here is a link for online donation, but apparently $25 is the minimum. You could send something to us, as well...and it is a flat donation. Honestly, we are only thinking of something like $1, $5, etc.

A full day!

I started out the day (after we got the kids ready and off to school) with my MRI, chest x-ray and bloodwork. Then we picked up little Katie and took her out to lunch! It is always fun to pick up Katie because even sharing a word with her teacher is a treat, but she has been so amazing since this diagnosis, and is such a strong, positive woman and role model.

After lunch, we met with a second plastic surgeon, who I really liked and, I believe, prefer. Lastly, we went to Susan's Special Needs where I bought a wig! I'm going to go get my haircut to match this wig (I mentioned it will be quite interesting to go for a different look in the hair department, so I am taking that opportunity!), and then just before my hair is ready to come out, I'll go get all fitted and fixed up for the wig and I'll be ready to go. Susan (of Susan's Special Needs) and Verna are amazing, wonderful people and they made me feel so good.

Maybe I'll write more later, but I have some kids to get ready. It is Emma's first Reconciliation tonight. She doesn't want to go, but don't tell God or the priest!


Sunday 2/24

The girls' rooms are done! What a relief. And thanks to Sybil to David, their new closet doors were all painted and the Lucken family was able to go have some fun (otherwise I would have kept working all day on them).

This afternoon, we went to Bird Hills Nature Area in Ann Arbor (after a lunch stop at Zingerman's ). I spent my whole first pregnancy mulling over the changes ahead while walking there with my darling dog Dagny, and I've been wanting to take the kids there ever since we moved out of Ann Arbor. It is one of my favorite places, ever!

Dagny and I showed the girls around, and Katie helped Dagny pose for this picture.

Nathan has taken to wearing Daddy's hat for most of the day (he wore it to bed last night)!


A conversation with Emma and Katie

I was explaining to my girls some of the changes that might take place...
Emma: "Oh, we don't care what you will look like."
Katie: "Right. Because we are your family. And that's what families do - they support each other."

Can you even believe how cute they are?

Plastic surgery, and recent good thoughts

So I met with one surgeon for my reconstruction...he was really very nice. Though I've tried my best to get used to the difficult scenarios in store, it is still a shock to hear certain things. Part of me feels like this is all very interesting, sort of a new intellectual pursuit. But then I realize, wait, this is me and my body! WHOA, that's a whole new thing!

So seeing the pictures and hearing about the process was not fun, but let's go on to the good thoughts I've had recently...that seems to be so much of a better focus!

The surgeon said I should do well with reconstruction, as having three children and nursing them, etc. has left me with enough extra skin in that area. I never thought I would be glad I was already sagging! But that is a joking good thought, not the real good thoughts, so I will proceed.

My mom never got a chance to say - "Hey, wait! I want to have a say in my own mortality here!" I am going to make myself feel glad that I have a chance. I can say, take this stuff, give me some scars, change my whole body, but leave me around longer. When I was painting yesterday, I had a few conversations with my mom telling her I would really try my best with this, that I would use this chance that she never had.

Especially since I've had children, I have had moments when I felt like I really began to understand things about my mom - things I might have already understood if she hadn't died before we had the chance to have those conversations. I know lots of people start to understand their mothers more once they are mothers, too, so I have always been thankful that I've gotten to understand mine (I think) in a similar way. I am thankful for this one more chance to understand her. When you are 12, and your mother dies so suddenly, you sometimes have sad thoughts that maybe it wasn't so hard for her when she left you. I definitely so differently now. I feel like it is a huge gift that now I viscerally feel like she would have done everything to stay with us if she could have, and I am going to give everything because she couldn't. (And I am expecting her to help me! But seriously, I've had weird things happen when I really needed her, and I knew she was there...So I feel like I should be able to count on her now.)

And the last good thought before I begin painting like crazy again today: I'm going to do my very best to help myself and hopefully my daughters learn from this that a person is so much more than what they look like. I've always felt strongly that it was my job to do this for them, but here is a really big opportunity to do that!

WAIT, there is one more amazing thing... all of our supporters! Bill still cries each time I forward him another email, and tears were running down his face when he saw the Lotsa Helping Hands website and everyone who has registered to help us. If anyone reading this knows of someone who wants to join, they can contact my sister-in-law, Angela Guenther, who is serving as the coordinator. Her email is angelaann23@gmail.com. (If you contact her today, wish her a Happy Birthday!)

So now off to the world of paint. Wish me quick and good painting... I have Katie's room 3/4 done already!


Busy, busy!

I've got my hands in a lot of different pots today...Here's the latest:
  1. I'm picking out paint colors for Emma and Katie's rooms and I'm going to paint both of them this weekend! I've put it off or made myself too busy otherwise, but I'll feel so good having that promise fulfilled before I start treatment. I'm going to hire someone to do the terribly tedious task of painting the woodwork (has to be primed, so it really is tedious) and I'll just do the walls. Maybe I'll be so sick of painting that I won't miss it during these next months, and plus I'll feel good when I look at those walls!
  2. I'm finding a hairdresser...after years of cutting my own hair I can see I'll need someone's help soon! I've never had a different haircut or color, so maybe this will be the chance to see my hair in many different ways!
  3. I found someone to clean my house - a little luxury for these upcoming months!
  4. Family and friends are setting up a place at lotsahelpinghands.com...a good way for people to coordinate all this help that is being offered.
  5. I'm planning an early birthday party for Katie...I hope to get it done before I do treatment or surgery so we can all have a great, fun time with Katie and her kindergarten buddies! (Her birthday is April 2nd, so it would only be about 1 month early)
Well, very fabulous Katie has come downstairs....she's wearing gorgeous sunglasses and paperclips on her fingers (glamorous long nails). Time to run off and pick out some paint colors and then do some fun art with her!

Top Ten "Sedentary" things for Pam to perfect in 2008

Here is a list of very excellent suggestions from my adorable sister-in-law, Bonnie, and my brother-in-law, JD:

Top Ten "Sedentary" things for Pam to perfect in 2008:

10 - Origami - it's a lost art that you can perfect and impress your
friends with
9 - Learn the Rubic's Cube - Emma can teach you how to do it.....the
solution is online too:-)
8 - Teach Dagny new tricks with the intention of getting her into
show business when this is all over and you have more time
7 - Walk around the block 10 times a day - trying to make the
neighbors wonder :-)
6 - Coming up with new inventions and making prototypes (you know,
things like automatic pooper scoopers)
5 - Reading People Magazine - evaluating why your life is better than
most of those peoples (talk about a crazy life)
4 - Rediscover the greatness of 80's music (this one is JD's) and
demonstrate your new talents with a karaoke machine
3 - Figure out all possible furniture arrangements for your house,
try them all out and take pictures of each one so that you can make
an "Informed" decision
2 - Become a Photoshop expert - making pictures of the kids look
silly (my sister does this with Paige..it's pretty funny - I'll
forward one to you)
1 - Invest in a pair of binoculars and "learn" more about your
neighbors (JD's too...hehe)


Thursday, 2/21

Hi to everyone (if you are visiting...if not, I'm happy to keep a little log for myself!)

I had the good fortune to speak to someone today who was inspirational, a woman who is just a couple of years older than me, who has 3 children around the same ages as my own, and who also has breast cancer. She has just gone through a double masectomy and chemo, so talking to her was helpful as I think of the path ahead of me. She suggested I start a page on CaringBridge.org, which is a great website...but as I'm still having a hard time seeing myself as a patient I think I'll just start here for a while, with a little journal. I'm used to this, I've written here before, so this feels more like me for now. So please forgive me if someday I am more capable of seeing myself as a patient and I then send you over to CaringBridge, to a page there. For now I'll just write my thoughts and put little updates here.

Today I had an appointment with a genetic counselor and had my blood drawn to see if I have a mutation in the BRCA 1 or BRCA 2 gene. I'm not sure that any of the information I could get will affect the imminent future, as I am almost entirely positive that I am going to go ahead with the double mastectomy and I'll have to have chemotherapy either way. It will be good to know if I need to look out for my ovaries, etc. in the future, and it should be useful info for my sisters and children.

I'm doing pretty well with the diagnosis, especially during the day when there is so much to get done - all the appointments to schedule or attend, all these kids! and regular life things. I get a little more worried at night. Since it is evening right now, I should probably make this a very short post and come back tomorrow when I am feeling better about things! But maybe I'll just go on and on...

I guess it is really sinking in how much I did not expect this for myself, and how strange I find this whole situation. I just never, ever, ever thought that I would have breast cancer, and especially when I was 34 with 3 young children at home! I keep telling myself that I've made it through other totally unexpected and hard things in the past, but I am going to have to make a huge poster for my room so that I remember. I have made it through hard times before.

I keep telling people, and I really mean this, that I am so worried about my kids. I know that kids are resilient, I know that we have a huge community of support, but I also know from experience how much things can hurt small children, especially if it involves their parents. I just want to get them through this fine, but I know that I am not exactly the most quiet or private person and I'm afraid I'll just be dragging them through all of this with me. So pray that I grow up a bit and learn to hold back for their benefit! (It is a shame Emma is literate...maybe I can keep this blog a secret from her for a while!)

Anyway, let's think positively, Pam. Here are some amazing things that have come of this, in just the 6 days that I have even thought of this to be a possibility:
  1. I'm totally done worrying about a few things that have bothered me for years - I've been whining to Bill for years that I need to get myself that career I was going to have, that there is so much I want to do, that it is so boring and monotonous to be with the kids all the time. Now I am just glad I've been with them, glad there is nothing else I need to organize to get cancer removed and cured. I've been trying to stop whining about that for years and wow! Now I've stopped! Bill will attest that this couldn't have come about for any other reason than something really big.
  2. I've spoken to, or heard from, my dearest friends from all across my lifetime...realized I have some pretty amazing newer friends, have had opportunities to talk with my most wonderful aunts and uncles.
  3. I've never been so happy with my hair! ha ha
So tomorrow is a quiet day, no appointments. It is hard to not be at the computer, writing back to all of my dear friends, family members, and family members of friends, but I am going to try my hardest to take a break. I've got so much reading to be done to mentally prepare myself for what is about to happen, and I really want to put my little self on that rowing machine for a good long time (it's the best way to clear out bad thoughts and put the good ones back in, I find), and most of all, I need to have fun with my children, and then yell at them when they get too rambunctious and start hurting each other. That way they'll feel like everything really will be somewhat normal around here!

But, to everyone, THANK YOU SO MUCH for such an overwhelming expression of your support of me and my family. I have read every message, and I've told Bill of them also, and he cries everytime he hears of someone else writing to us! It means so much to us.

So I will write more again soon...hopefully not so long, though!

First Notes

Hi everyone,
At the request of my dear mother-in-law, I'm writing a little synopsis of my day at Beaumont. Feel free to forward this to anyone that is interested...this little journey of ours is probably going to be pretty obvious soon enough!

So as a review for some of you, I felt a lump in my right breast about 3 weeks ago (while on vacation), made an appointment with my doctor right when I returned and saw him on that Tuesday. He sent me to Beaumont last Friday where I had a mammogram, an ultrasound, and then a biopsy. I found out on Monday night when my doctor called that I have breast cancer, specifically, invasive ductal carcinoma (which means it started in a duct, but has spread out of it). This is a kind of cancer that 90% of breast cancer patients will have...the only unusual part of this is that I'm only 34 years old! But crazy things do happen, and we all know that.

So I met with a breast surgeon today at Beaumont, and the nurse that follows her. It was very interesting, as they were totally prepared, had binders of information ready for me, have already called other people who need to know , like the oncologist. I have more tests out that will help decide the treatment plan, specifically, whether this mass (it is 1.2 cm, a poorly differentiated mass which means it looks nothing like regular breast tissue, it's a grade 3 which means it has an aggressive growth pattern. Again, that is not unusual for someone young who presents with cancer.) is hormone-sensitive or not. If it is, then I will probably start chemotherapy right away, as it would most likely respond to a certain type of chemotherapy and it would shrink the cancer before surgery.

I also have genetic testing scheduled, which is always suggested in a young person. That would determine things for my female relations, but it would also determine whether or not I need to have my ovaries removed also (at a later date). I'll soon have an MRI, and a chest x-ray as well which will help the surgeon prep for surgery and determine some of our path.

Because I am young, regardless whether the the mass is hormone-sensitive, I will have to have chemotherapy (most people lose their hair, etc). Since the hope is that I'll live for another 50 years, they want to make sure that any little cancer cell that may have escaped is totally eradicated and won't show up elsewhere. Also because I am young, I'll probably elect to have a double masectomy rather than anything else (which would be a lumpectomy and radiation). It's going to be a huge pain and more recovery, etc. than a lumpectomy would be, but the thought process is that if this could happen to me at 34, than what might come back at 39, and do I really want to have to go through this again? As you know, the statistics say that 1 out of 8 women will have breast cancer in their lifetime, and if I already show a proclivity towards it, I might as well do everything I can to prevent it from surfacing again!

So apparently, 2008 is going to be a crazy year...the surgeries and doctors' appointments and physical changes are going to be very interesting, time-consuming, etc. I feel very lucky to have a supportive network of family and friends because although I am feeling ok and even upbeat about this now, I am sure I will have my moments coming up! My biggest concern lies, of course, with my children and my husband and I know it is going to be a huge change for them to see me without hair, unable to tear up the yard this spring, not taking on all the home renovations I am always taking on, no rowing, etc. I've been telling them I'll take this year to do all of the things I haven't done yet that involve me being more sedentary! Emma did tell me that I'll be able to wear a pink "survivor" shirt at the 3-day walk for Breast Cancer this fall, and though that wasn't my goal, perhaps, I did thank her for reminding me of a very good goal and a fun way to spend my time! (I can hear the neighbors now: "Why, that is the 3rd time I've seen that hairless woman walking past this house today! Whatever is she doing?")

A very special thanks to all of the people who have called, sent food, or sent good thoughts our way. An extra-special thanks to everyone who supported my 3-day walk last fall, as I feel a bit comforted knowing that I am not even close to being alone in this, and the 3-day walk gave me that powerful message that is helping me today. So THANK YOU!