3/31/08

A schedule, and how I may have saved my own life

It was a day of appointments - I got my drain out early in the afternoon at the plastic surgeon's office, and then I headed over to the oncologist where I waited for 2.5 hours for my appointment!!!!! Thank goodness for Becky Brady who had all 3 of my children for more than 3 hours today - on top of her own 3 children!
The oncologist is worth it, though...and it was his first day back from vacation so I suppose we should have expected a wait. It really wasn't bad, though, and spending all of that time alone with Bill was as close as we have come to a date in a LONG TIME, so that made it fun.
I start chemo in a little over 2 weeks - on April 17, a Thursday. I was able to choose a day and I chose Thursday for 2 reasons - first, it is one of their less busy days and second, apparently the effects of this chemo usually hit hardest about 6-7 days after you have your infusion, so I would be pretty close to a weekend where Bill could do things with the kids.
So I think this is how it will go on the weeks of chemo: Wednesday - to plastic surgeon to have my expanders filled, Thursday - chemo (it takes 3 hours) and Friday - go back to oncologist to have injection to boost my immune system. I will do this 6 times, and if everything goes right and I can go every 21 days as planned my last day will be July 31st. That's a good 8 weeks to get ready for the 3-day, and life should be really close to normal before the girls start school again in the fall. I will also have chemo on my dad's birthday and my 35th birthday this year!!!!! I suppose I could switch that but apparently the day of chemo is a pretty easy day - you are feeling your best (they don't give it to you until you are ready for the next one) and the effects don't hit yet. So Bill's 37th birthday was at U of M and my 35th will be at Beaumont, but both of those days are longer days together than we would have normally had otherwise! I am even estimating that I will lose my hair at the start of May - a more free and easy look for the spring and summer time! (Actually, I have plenty of hat-like things picked out to buy at Susan's, and the wig is already here...I just have to make an appointment to get it all cut up the perfect way.)

Now, to the other part of this post...check yourself today, people! It is becoming more and more clear that I may have saved my own life by doing that random* self exam. Today the oncologist told me that the tumor was extremely close to the chest wall (breast surgeon told me this), and touching the fascia. If it had gotten through the fascia I would have been in some serious trouble. The oncologist also told me that a lesser surgeon might not have gone ahead and removed the fascia - so I felt very good about my surgeon today, and glad that I found the tumor before it had gotten any bigger! I also learned that my tumor had vascular invasion, which means it had access to my blood vessels (bad) but it had not yet moved to the lymph nodes (extra lucky). If I had not checked myself right about when I did, my news might have been more scary and my prognosis worse. Now of course I am still treating myself/being treated as aggressively as I possibly can...but my prognosis is just better. I also love hearing that I had "a small tumor". Funny what can make you happy, under the circumstances!

*I don't really think my self exam was random, by the way. About 6 weeks prior to it I was rushing around in the basement in the dark like the brain that I am, and I had a freak accident where I tripped over something and slammed my chest into something else. My chest hurt for a while, and I was on a trip in Disney when I had the idea to feel around and see if I was healing...and then I felt the lump. I really thought I had just bruised myself. My actual thoughts about this whole thing is that I had the freak fall and felt compelled to check myself because either God or my mother was trying to make me notice something that had the potential to become much more problematic, and soon!

3/30/08

2 more 3-day additions, and weekend update

Another dear friend from high school, Sakura Keast, has signed up to walk the 3-day! Also, Bill's cousin, Melonie Martinez, has signed up as well. I can barely keep up with all the wonderful walkers!

I left the house yesterday for only the 2nd time since the 18th/day of surgery, but that is more because it has been chilly and everything seems to hurt more when I am cold. I've been pretty active, otherwise - I've been outside with the kids on nice days, I've been on the treadmill more days than not, I'm doing tons of normal things, and I've also seen plenty of wonderful people as they bring over meals or drop off my children - but I hadn't been in public yet since the surgery. (The other outing was for Easter brunch - so I was with beloved family members as opposed to being in public.) We went to Ikea and joy of joys! We left without any purchases except for cinnamon buns!
I did feel like it was weird to leave the sanctuary of home - it is strange to be in the old situations but feel like I am so different. I felt a little morose - why did I have breast cancer when all of these people probably don't have some sort of crazy disease like that? Then I promptly told myself that I was being stupid because of course I don't know what private trials they might have (and maybe their trials are worse). I do sometimes feel like I have an invisible mark of inferiority since my traitorous body went haywire on me - though that thought really only crosses my mind when I am out in the world, observing all the people and contemplating what a small percentage I now belong to - the percentage of youngish people who have/had cancer.
It was a good exercise, though. It is easy to feel very comfortable and Pam-like when you are at home and in your own little world. It is more thought-provoking to put oneself in public and see how one's theories of themselves play out. I have given myself a little mantra, though, when I start to feel like my life is forever changed by this disease; when I am asking myself, why me? I tell myself to make this be a change for the better. I pray that God will show me a way that I can make a positive difference in this world, and if having breast cancer is one way that I can do that, then I'm fine with that.

Today I drove myself for the first time...to church. I felt like God would make that an easy destination for me (ha ha). Anyway, my doctor said I could drive as soon as I was done with serious pain medication, like Vicodin (which I have been for a while), and after that, as soon as it was comfortable. It was a little uncomfortable to turn the wheel of that big giant minivan but not seriously hard. It felt like the expanders were moving around, which is a sensation not unlike a pregnant woman feels when her giant baby decides to turn over and push its limbs under the other rib, or something similarly inconvenient.
For a few days now I've been quite comfortable, and only needed to take pain medication at night. I feel like I get more swollen then and wake up hurting, so I take more Ibuprofen and go back to bed. The drainage is almost done...I would bet this last drain will come out within the next couple of days. I am actually expecting to go to the plastic surgeon's office tomorrow for that (we'll see when I call in the a.m.) , and I also have an appointment at the oncologist's office which will probably give me information about the chemotherapy that should be starting soon. More updates on that tomorrow.

Lastly, I think my new chest probably ALREADY looks better than my old one, scars and all, with almost no filling in these misshapen expanders. My "breasts" are at least in a better place now than they were before (which was that sagging place)! That shows the sorry state of affairs my chest was in after being pregnant 3 times (studies show that is what leads to sagginess, more than breastfeeding, but I am sure breastfeeding for all those years didn't help). I had a feeling I might be trading up, but I didn't expect I'd feel that way so soon! Again, I don't really care much about the looks - less even than I thought I would - but I do think it is an interesting observation that was worth sharing. Maybe someone will encounter a woman who is shocked and sad about her breast cancer diagnosis, and can relate this story about how one can come out of the whole thing better than before, physically too!

3/28/08

Other fun sedentary things to do in 2008

Animal watching!

I don't advertise (or try not to) how many pets currently live in our home; let's just say my pets alone would provide me with quite a few different animal watching opportunities. But, living where we do, we see many other animals as well. It could become a full-time hobby:

This blue jay was taking food from the feeder, flying up to his mate, and feeding her.


This couple prefers to dine together at the feeder.


Look at the mongrel I found in my yard!


WHO is this?

I'm cheating with the last two pictures, though. We saw the Eastern Screech Owl in our tree on a night in January, not today. And everyone knows that mongrel sniffing out the squirrels is my beloved pooch Dagny, so that animal watching doesn't count.

Not really such a bad patient after all...

So I spoke with the nurse at the plastic surgeon's office today, and she said the amount of drainage flowing out of one side of my body, so luxuriously, is very, incredibly normal. She said it would be normal for it to flow a bit more heartily because that side is now helping the other drain-less side to drain. How kind of it! How relieved I am. It is so like me to assume I am doing everything wrong and to try to overachieve the healing process.
A wonderful side affect of my overachievement is a totally wonderful happening - my children are off to the Detroit Science Center with BOTH grandmas, and their cute cousin, Shane. Of course, at the last minute I desperately wanted to go, too, because of all of them I would be the most fascinated at the display of Shipwrecks. I used to think the Gordon Lightfoot song about the Edmund Fitzgerald was most beautiful and tragic. Such a nerdy little girl! But I convinced myself that I would be ruining a most interesting and fun memory in my childrens' lives ("Remember the time BOTH GRANDMAS took us to the Science Museum?") and so I stayed home. Plus, I feel this is showing such an improvement in my neurosis about children leaving me - the children are even driving in TWO SEPARATE CARS!
Bill dressed Nathan this morning (as he has been doing). I wondered why he was putting a giant oversized Pistons jersey on my little 2.5 year old boy, especially as said 2.5 year old boy was yelling at him to stop. My husband replied, "He's going downtown; he needs some street cred." Oh, does he? It was cute to see how happy he was to have his little boy all boy-ed out like that though. Here's a picture:


A new 3-day team member!

Therese Schueneman, my wonderful friend from Regina High School (and one-time roommate in Chicago - we shared a one-bedroom apartment across from the Lincoln Park Zoo) has signed up to join our 3-day team! You can find her page here.

3/26/08

A bad patient and a neurotic mother

I had a little crying fest last night, was mean to my husband, told him my children were beasts, cried myself to sleep because my chest hurts and I don't like sleeping on my back, and I was tired and worked-up. So people, stop saying I'm being brave, because I really can be just as big of a baby as the next person!
I'm a bad patient, especially with Bill back at work this week. For some reason, I cannot relax unless he is home - I cannot turn off the parenting reflex enough to take a nap, or not put that away, or lie around when children are physically or emotionally abusing their siblings! If he is here, I don't have a problem letting him be the parent while I relax...and I don't have a problem telling him what to do for me (poor man). I'm not as comfortable telling other people what to do, even if it is my most wonderful mother-in-law or my eager and kind stepmother. Plus, it is spring break so if one child is gone, the other two are here, and Nathan is always here (and he is either on the verge of dropping the nap forever or already has...he especially won't nap with all the activity around the house).
Bill has to be back at work - he took off too many days already and at a point in his career when he is busier than ever. Of course I know I have plenty of helpers, but I was mad last night that it wasn't him and so I yelled at him and told him he was abandoning me! Nasty woman. I sound exactly like Emma these days, because she wants things to be like they always were with me doing everything, and no other people around, even if they are our beloved family members! I barely let them go in anyone else's car before this! They've slept over at grandma's house maybe three times. We've taken them on every vacation (this year we branched out with a 1.5 day trip to Charleston with no kids.) I think they have had maybe 2 babysitters in their lives who were not our immediate family members! I know I am neurotic from not having a mom for so many years, or more likely neurotic that something will happen when they are away from me and I won't be able to save them. I've mentioned that my greatest fear is not dying, but losing another family member. It is going to be good to learn how to let them go and do things and not have me be a parent 24 hours a day, but it feels almost as hard as going into surgery.
BUT, Bill did swoop in and save things. He called his amazing mother who came over, picked up the kids and took them away for the day. He called the surgeon's office and canceled the appointment (can't get a drain out if it is draining MORE). He came home in time for dinner (it was so delicious - thank you Brady family!). I slept ALL day, and the drain did better.
And hopefully I will do better learning how to let go of my children more so that I can heal!
THANK YOU TO SYBIL, who is always our savior.

Another 3-day team update!

My adorable sister-in-law, Bonnie Kenewell, has signed up for the walk!!!! She will be coming in from Pennsylvania to join us...thank you to Jeff and Paige for donating your wife and mommy for those 3 days! Here is her walk page.

3/25/08

She has clean lymph nodes!!

Dr. Dekhne called me this morning and told me she had good news - all 3 sentinel lymph nodes were clean (I wish I had the presence of mind at the moment to remember the exact words, because she said it in such a great way - like absolutely, or something)! The tumor was 1.7 cm, and she told me the pathology report says that it was quite close to the chest wall, but that I shouldn't worry at all about that. There is a fascia that separates the breast tissue from the chest wall (thank you fascia) and as long as the surgeon takes that out, there is not a worry that the cancer could have touched the chest wall.

This would mean that my cancer was a Stage 1 (Doctor didn't say that, but less than 2cm and not affecting the lymph nodes means Stage 1). No more lymph nodes need to come out and no radiation! Now I just have chemotherapy to make sure to destroy any microscopic little renegade cancer cell that might have gone somewhere else, but how great for that insurance, in my opinion!

I feel certain that all of the prayers made a difference - and I had lots of prayers coming my way! THANK YOU FOR PRAYING FOR ME!

My shoulder is wet because Bill was just crying on it - with happiness, for once! (He is the sweetest husband ever.)

Be clever, people!

If you haven't checked lately, wouldn't today be a good time to do your monthly self breast exam?

Here's an interesting note: the female relatives (daughters, sisters) of a woman diagnosed with breast cancer should begin having yearly mammograms or other screening 10 YEARS before the age of the woman's diagnosis. For Emma and Katie, that means they will start having these screenings at 24, and my sisters should have theirs as soon as possible (they are both nursing babies at the moment, and the recommendation is to wait 3-6 months after terminating nursing). I was scheduled to begin mine at 35, which I thought seemed proactive of my doctor as I thought the age to start was 40. Of course, we all know I found a lump before I ever had a mammogram.

The good news of finding cancer on a mammogram is that the cancer could be found at an earlier stage - perhaps DCIS (ductal carcinoma in situ - cancer still in the milk ducts) instead of Invasive Ductal Carcinoma (the cancer after it has grown enough to leave the duct). DCIS is considered a stage 0 cancer...very treatable.

Lastly, don't be so afraid to find a lump that you don't even check, and don't be too busy to check. Some months, I would feel that fear, or I would forget. I promise to remind people myself, as it is a subject more on my mind than on most minds, I would expect! 8 out of 10 breast lumps that are removed are benign, or non-cancerous. Small lumps (under 2 cm) that have not spread to the lymph nodes can still be considered Stage 1 cancer and there are excellent survival rates for that.

Be clever... check today!

3/24/08

N3 3-day team updates

Becky Brady signed up to walk the 3-day this fall! You can find her page by clicking on the link at the right...or right here!
This is her first year, and she is walking in memory of her stepfather, Tony Meo - a very giving and loving person...and in honor of her Aunt Virginia.

Congratulations to Wendy Christie, who has surpassed $2,200!

One drain is out and I'm having a party!

I will go back in two days, maybe the other one will come out then...but this one hurts quite a bit less so I don't mind. I don't know if it was the stitch that kept it in that hurt, or the fact that there is more sensation in that side, but the left side hurt much more. The right side is the cancer side, so I'm sure there will keep being fluid draining out of it. I've gotten so good at bathing and dressing around these things, it's not a big deal.

It was yucky to get it pulled out, because there was about 6 inches of drain tube inside my body and I could feel it moving through, but it was over in just seconds.

They also took off the bandages covering the scars, so I can see the incision lines, etc. but it is also so not a big deal. I don't mind the look at all...it is still me! All the people who had double mastectomies and said it wouldn't be terrible, it would be fine WERE SO RIGHT.

So now I cannot stop smiling at the new level of comfort! SO exciting.

Breast Cancer Patient Protection Act

When a woman has a mastectomy at Beaumont hospital, it is usually an outpatient procedure - the patient would normally go home the same day. I stayed overnight, but that was because I had immediate reconstruction, which makes the whole surgery more complicated, longer, and the recovery more painful.

There is a petition going around to require insurance companies to cover a minimum of a 48-hour hospital stay for patients undergoing a mastectomy.

I'm not sure how I feel about the petition, but I wanted to put a link to it on this blog in case some readers feel strongly about signing it. Personally, I wanted to get out of the hospital as quickly as possible because I have heard and read that the longer a person stays in the hospital, the more chances that person has to be exposed to harmful, infection-causing bacteria...I learned in microbiology in college that I want to stay as far removed from certain bacteria as I can and I would have walked home if I had to the next day! My doctors felt the same, though I am sure some of the reason I left so early may have also been insurance policies.

So, feel free to think about this and make your own decision...maybe this is something you'd like to support? In any case, the webpage connected to the link seems to be a nice one with lots of features...I was glad to click through only because it reminded me to set up an appointment with an acupuncturist (*I've heard it is useful for people going though chemotherapy, but this website said it would help with recovery from surgery, too...so I'm all over that. Of course, then I called Beaumont and they said they were scheduling new patient appointments for acupuncture in JUNE! I will be halfway through chemo by that time! So, I've got to find someone else...I do have a few leads though.)

Look at my new fun links!

Here are my latest fun additions over there at the right:
  1. Nancy's Naughty Nockers blog - it has a supremely fancy calendar to keep track of our 3-day team's upcoming fundraisers
  2. Animalrescuesite.com - of course you have seen it before (along with the breastcancersite.com, hungersite.com, etc) - but how easy is it now to go and click on these sites if you are already looking at mine? SO easy, because I was enjoying doing that today!
  3. Freerice.com - more fun than a person can stand - vocabulary practice and if you get the answers right then you donate grains of rice. Maybe not everyone will be as excited about this as me, though...In college I made up vocabulary practice tutorials for my friends and boyfriends and made them take the test - was it very useful for the now college math professor, parasitologist, and the two engineers who attended the tutorial? Probably not, they were just being nice to English major.
If anyone has any other good sites for me to visit everyday, send them!

Whoa, I've got an interloper!

I see that my husband is now rearranging things on my blog...and yesterday we were sitting at Easter brunch when he mentioned what a nice message I had received from my friend Therese, which I hadn't yet seen and totally missed since he opened it first! What a little stinker. I'm glad we have grown closer in the past month (all the extra time spent together at dr's appointments, and helping me to get changed has multiplied the normal amount of time we would normally spend together by about 500%!), but it looks like someone is going to need to change some passwords soon!

3/23/08

Kind words from friends and strangers...

As I've often mentioned, I've been OVERWHELMED by the outpouring of love and kindness for little old me (probably not deserved, y'all) and for my family (definitely well-deserved, as this point in my life has made more clear than ever).

It is so easy to let things cloud out all the beauty in the world, and especially, all the beauty in people. I've really always felt that there was a lot of goodness and beauty in the world, and tried to teach my daughters that, especially - but of course like everyone else I was SO OFTEN mired in all of the junk, too. I told Bill today that I don't think I would really go back to my pre-cancerous state, because I've learned a lot in the last month and it's been a gift to me to be reunited with the beauty and the love that was in me or other people. I have two analogies - one is that I had layers of useless junk and worries over my real feelings, and the cancer stripped those off so quickly and now I am more in touch with how much I love everything. The other is that I'm like a camera that just received a new, totally awesome lens which helps me to focus in on the good, more easily.

I can be so clueless that I have no doubt it would have needed to be something big to change my stubborn way of thinking about myself. But - wouldn't it be better than great if I could share some of this newfound self-acceptance with people? I am sure that I'm not the only person who has had problems thinking she was good enough (whatever that is) all too often. Wouldn't it be amazing if others can learn to love themselves for who they are vicariously, through me and my learnings?

The other thing I would love to share is how much goodness there is here in the world, in other people. I'm pretty quick as a person to fall in love with other people and to think they are "the best ever", so I'm not as amazed that people are so wonderful at this time in my life (more just surprised that they could be so nice to me). But I know that it can be so easy to be suspicious, or competitive, or insecure, or blind...and I feel duty-bound to share with everyone some of the experiences I've had over the past month that really highlight the goodness that is in other people.

So, I'm going to figure out a format for this, but I'll start tonight with some things that people have said and done that really just highlight the fact that there is God and goodness in everyone...maybe tonight I'll start out with favorite quotes and hope to figure out something better soon.

3/21/08

Quotes

When the storm breaks, each man acts in accordance with his own nature. Some are dumb with terror, some flee, some hide, and some spread their wings like eagles and soar on the wind. -Elizabeth: The Golden Age

Lucken Children Status Report

It is possible that my children are going to wish that mommy had a bilateral mastectomy every week (sorry kids, I don't have any more to lose)! They have been having such a nice time - starting with Emma's class making a get well soon card, playdates after school, manicures with Aunt Angela, seeing their grandparents just about every day, eating delicious meals, Daddy is home all week, presents come in the mail, Katie's teacher calls to check in on us... Once I got home from the hospital it really seems like it has been smooth sailing for Emma, Katie and Nathan, and I have so many people to thank for it! I will be writing the most heartfelt thank you notes as soon as I get my drains out, and I won't stop writing for some time, it seems. We are so unbelievably lucky to be part of such a generous and loving community of people.
Nathan even knows the drill for emptying my drains and makes motions for me to do the next step - he lifts the toilet seat for me to empty the contents in. If that isn't just the best example of how not private (and how gross) I am, I don't know what is...and it's also a good example of how the child is totally content and happy as long as he feels like he is included in what is going on. Such a weird family. If we wrote a book, it wouldn't be Mommy Had a Mastectomy. It would be Mommy Had a Mastectomy and I Help her Empty her Drains - Yay!

3/20/08

Spending a little time with my scars

I've looked at what lies beneath this compression bandage a few times...I'm not shy when it comes to blood and guts and scars so I knew I would probably look as soon as I could reach and pull down the zipper myself. Today, though, I spent a few minutes looking as I gave myself a little sponge bath and put myself together.
I won't deny it; tears were running down my face and I did feel a little sorry for the bruises and incisions. But I also had this overwhelming feeling that this is a body that needs love from me, more now than ever. I haven't been very good at that (in fact, I've been horrible); I've never felt like it was good enough. It might be easy to feel that way in a society that is always pushing for something leaner, more youthful; but some of these feelings were purely my own dissatisfaction just for the sake of being dissatisfied. I made myself feel that way. Nothing was ever good enough.
Alone with my scars, I did promise myself that all of that is now over. I'm sticking to a similar plan that I'm using for my emotions...I'm going to control what I can control, in a situation where there is lots I can't control. Before this, I didn't think I could control what I thought about my body, but when faced with something larger, I now find that I can. When given a body that is now so far from perfect it is obscene, I'm going to be proud of it, I'm going to take care of it, and I'm going to love it. I'm not looking back to what was, or spending time being upset over what I had before...and I might even find that I'm happier now with how I look than I could have ever been before I had cancer.

3/19/08

First day update

Don't get too excited about the lymph nodes yet...they looked ok in surgery but that only means they didn't see anything that would mean they should take out more nodes while I was still on the table. They send everything (the tumor, the nodes, etc) to pathology from the surgery where they slice up those nodes into many, many pieces and THEN they will know if they were affected or not. I should get those results in about 7 business days...and then I will know what stage cancer I had, etc.
I am praying very, very hard that those nodes will be clear, because if they were not clear and had cancer in them (the cancer could still be very small and so not easy to see in the preliminary look during surgery, or the cancer could be in a part of the node they weren't looking at in the preliminary look) I would have to have another surgery to have more nodes removed, and I would have to have radiation. So it is not really time for celebration yet!
My first day at home has been nice. I'm not minding having people picking up my children from school and making me meals and sending flowers, that's for sure! I even got my very first American Girl doll from Bill's cousin Whitney, who is the biggest and best collector of those dolls I've ever met. Sybil and Joann have been keeping house, and it has never looked nicer, and Bill has been running out to the stores (and I'm not yelling at him when he comes home 2 hours later with strange purchases, as I might have done before diagnosis). I watched Dancing with the Stars (first time ever) and took a nap!
My plastic surgeon says no showers until the drains come out, my breast surgeon says don't do very much with my arms at all (even typing) or stuff will keep draining. So I am taking it easy with my arms, for the love of showers! I have my first follow-up with the plastic surgeon on Monday. Otherwise, I am feeling good. I have to say that this doesn't feel worse than recovering from c-sections, and though the immediate pain when I woke up from surgery was crazy, it wasn't any worse than some of those labor moments with Katie. The nurse told me some of the nausea would lessen if I went to sleep, so I simply kicked all of my supporters out of my room the minute I got into it, went to bed, and woke up feeling better. So it doesn't look like I have any chart-topping experiences here! I find that I am just gooky on top, whereas after childbirth I was gooky on the bottom. I don't have any stitches, either...they cut everything off and put me back together with tissue adhesive! The expanders have a really weird shape and I look a little like something from Star Trek:the Next Generation on my chest, but I'll just wear baggy shirts for a while.
Lastly, my friend Laurie has signed up for the 3-day walk! I'm putting her site on my link...if you haven't donated and were hoping to do so, please send money to Laurie!

A quick note from the cancer-free patient!

While roaming the halls of Beaumont, I found this lovely little computer and decided to send my own little note. I feel quite sore (muscle soreness), but other than that I'm pretty happy because the tumor has now exited the body! I'm not mourning its loss, or the fact that I am looking down at a flat little chest, either. Luckily I was never well-endowed and it doesn't look much different! I'm sure seeing the scars will be a shock, but I'm not dreading it. I feel like I am heading down the hill, in a way.

I'll write more tomorrow, hopefully! Time to walk back to my room for more pain medication...

p.s.- The drain tubes are not grossing me out as much as I thought they would, and I can raise my hands above my head! I even brushed my teeth, put on pajama pants, and can sit up in bed just fine. I'm so happy about those small little wonders right now!

3/18/08

Surgery was a Success

Pam is temporarily on assignment and Bill will be blogging in her place (I apologize for the obvious drop-off in writing quality).

Surgery day was a success. Pam went into surgery about Noon . She was in very good spirits and her waiting room team (her Dad, Step-mom, Aunt Joann and husband) was far more tense than Pam. We were also greeted in the waiting room by Nancy McIntyre - it was great to see her and her smiling face was a welcome addition to our pacing.

First, Pam had her sentinel nodes mapped and removed (on average there are 2.5 sentinel nodes or between 1 and 5). Pam has/ had 3 and all were removed which was anticipated in advance. The very best possible outcome for today was node negative results. Thus far, the nodes are negative! Thanks for the prayers!

The node testing is a critical staging factor which suggests progression or lack progression of the cancer. It will not affect the chemo/ treatment plan but is a vital data point. We will know officially in a week if the complete pathology verifies the operative pathology. So, there is a chance of false negative, but we can only hope that they stay negative.

The rest of the surgery went well and as planned. Before the plastic surgeon went in, I told him to, "have a good surgery". And it seems as though he did. The staff and both surgeons were superstars today and should be commended for their bedside manner and grace (we also heard that the female Beaumont staff would pick Dr. Dekhne as their personal surgeon which was nice to hear). Pam also got her port put in for the chemo which happened with some arm twisting (thanks to the Oncologist push). This will allow Pam to avoid another surgery in the next 2-3 weeks prior to chemo.

Pam is very tired and kicked us out so she could sleep. She finally made it back to the short-stay recovery room at about 6pm or so. She is in a lot of pain and commented that, "it feels like I did hundreds of bench presses and then had my chest run over by a car."

I want to thank each and every one of you for all of the help, messages, cards, gifts, prayers, donations to the 3-day, meals, play dates, etc . This support has been wonderful and uplifting. It is truly overwhelming to know we live in a place where such kindness and love exist. It makes us feel like anything is possible.

Last, Pam is the number 1 fund raiser in all of Michigan and Nancy's Naught Nockers is also the number 1 team for the 3-day walk. Thank you so much to all of those who have donated. You are awesome! We know it is a worthy cause but also your way of supporting Pam during this very temporary fight. The generous donations and unbelievable response to this effort has been amazing.

Pam should be home tomorrow morning - the next critical stage is avoiding Nathan's head butts and crazy antics. I think we can handle this after today.

3/17/08

Keeping it real

My friend Amy told me to not screen the hard parts in this blog, but to get them out there...so I will just say that I am still not afraid, but I am heartbroken. I am heartbroken that I won't be able to spend as much time with my little crazy ball of energy, Nathan. If you have ever seen Nathan in action, you will know why - he's a good little boy, but I'm sure if I get too close to him he in the next two weeks he would likely rip the drain tubes right out of my body with some crazy flailing movement. I'm so sad with the idea that I won't be able to toss him around, wrestle him to the ground for kisses and hugs, and be the one to pluck him from precarious situations. Even taking away a few of those hugs and wrestling sessions just feels so cruel to me. I'm sure I won't be an invalid for long, but I just don't want to give any of it away.

8am tomorrow morning

I got the call - I check in tomorrow morning at the Rose Cancer Center...8am. Apparently everything takes place in the Rose Cancer Center, 3rd floor.

3/16/08

A note about narcissism and blogging

I know one criticism of blogs is that they seem narcissistic - like the writers enjoy exposing their thoughts, feelings and lives and getting attention.
I do want to say that my main purpose in writing this blog is to get my feelings out - I'm horrible at expressing my feelings verbally (can barely talk, never say appropriate things from my mouth, I'm always nervous in person). I can only really process things if I am writing them down, and I like the blog format because I can write, push the little publish button, and never have to read what I write again. I hate the way I write, it is never good enough for me (maybe this is why writing the honors thesis nearly undid me), and when I read what I wrote it makes me embarrassed at how dumb I sound so I can never keep journals.
I do figure that since 1) I am so bad at speaking in person, 2) it might be so hard to tell people over and over again what is going on and 3) I am horrible at calling people back and keeping in touch, opening up this blog to whomever is interested is a good idea.
I just don't want readers to think that I am a horrible attention-grabber when I write things about myself, but I also don't want to censor my thoughts here since this might be the only way I am able to get all the way down into the crevices of my mind.

Worst things I've gone through so far

I'm making a list, and then I'm going to update it as I go through all of the things this spring and summer...just for fun.

Physically painful activities:
  1. Birth of Emma and recovery - painful labor was on and off from Thursday - birth on Monday. Birth was a c-section after 3.5 hours of pushing, so recovery was not as fun. Plus it was the first time so that wasn't fun, either. Prize at the end: My wonderful and lovable first daughter!
  2. Birth of Katie and recovery - less long, only from Sunday night - Tuesday morning. She was born semi-naturally, so the recovery was different and heinous in a different way. Prize at the end: My unique and sweet second daughter!
  3. Writing my honors thesis my senior year. This was physically painful because I had so much doubt in myself during this time period that I was horrid during winter training that year - each practice was total physical and emotional misery. Prize at the end: an A- (after I rewrote the entire 40 pages the weekend before it was due because my adviser became suddenly totally crazy and I realized I shouldn't trust her...she never read it, so an A- at U of M for my honors thesis written with no adviser's help was probably pretty good)
  4. A crazy hike Bill and I did in Glacier National Park. We took a wrong turn and ended up walking 19 miles with packs on, at elevation, with no training, on the sides of crazy cliffs in high winds, in one day. Prize at the end: shower and a bed
  5. Pregnancies - nausea, giantness at the end, and whatever else there was. I can barely remember it now. (prizes mentioned above, but also Nathan)
  6. Sports in general. I only picked sports that involved endurance, misery, and mental toughness over any sport that required natural talent and on-the-go brains (ran cross country and track in high school and rowed in college) Plus I was too big to be a good runner and not big enough to be a fantastic rower, but still wanted to be one of the best on the team. All of them involved nothing but months of hard, long practices and just a few fun races at the end. Prize at the end: boxes of medals/awards, 2 teeny scholarships for college, good memories, inspiring and wonderful friends

Emotionally painful activites:
  1. Mom's death
  2. Nathan in the ICU for 9 days after birth (so hard, I didn't even realize I was recovering from a c-section and pregnancy, I don't even remember physical pain)
  3. Honors Thesis - the writing, the horrible adviser who turned at the last minute, and presenting it at graduation, and the terrible, crippling self-doubt that crept into every part of my life. Prize at the end: Better self esteem after I actually pulled it off by myself. I wonder why I was so worked up in the first place? I guess I never thought I would be able to do a good enough job, and I didn't think I could take a bad grade on something I'd worked so hard on. So dumb.
  4. First pregnancy and deciding to be a mom instead of going to vet school as planned
  5. Lonely summer in France. I was an intern at a small company, I'm not good at making friends, I'm so not French (didn't look it, didn't dress it, I can't sit still during 4 hour meals, I just did not fit in, didn't know how to even try, was just so awkward). So lonely. Prize: I learned how to be by myself a lot and be happy, plus Bill came to visit at the end.
I suppose the good news here after this review is that I have had at least 4 hard emotional periods of life that lasted 2 months or more...and I've had a few small physical things. Hopefully it will make me a little stronger for the craziness ahead. Currently I'm not as afraid of the mastectomy scars and surgery pain as I am afraid of looking at my sick hairless self in the mirror, but I still have a few weeks of mental preparation to go before I become hairless sick Pam.

I should say, parents, make your children do at least one endurance sport in their lives! If they have some sort of crazy challenge ahead they will have some practice in at least thinking they are tough...(even if it turns out not to be true) Plus the good news is, you don't have to be an amazing runner to be on a cross country team, and you don't have to even have any experience (so far) to try rowing in college. I'm going to have to use psychological trickery to convince the 4 members of my little family that the kids need to at least try one of these sports, but I hope I will win.

Denial

Since my diagnosis, I've read a few memoirs and books of "inspiration" written by people who have had breast cancer...a few guidebooks, too. They fall just a little short of the What to Expect when You're Expecting to get your Breasts Removed in 2 Days book that I could use right now, but they are opening up new ideas for me.
I'm not going crazy with reading right now (leaving more of it to Bill) because I am afraid of worse things than a double mastectomy, drain tubes, port insertion, reconstruction, chemotherapy, sentinel node removal, and side effects. I don't really want to think about larger, worse ideas like recurrence because I think I should leave those ideas until I have gotten through the more immediate stuff. So because I have tried to stay away from anything that might talk about recurrence, I haven't read too much yet. I think I'll get to that when I get closer to chemo and will have to see people in worse situations than the one I am in right now.
These inspirational memoirs are a little helpful because there are some gory tidbits included (I need the gore for mental preparation) but they are just as annoying as they are helpful. One that I read tonight explained how there are steps to dealing with a cancer diagnosis, much like the DABDA concept I learned in our high school religion class, Death and Dying. The author talked about denial and how everyone (that was my problem, that she said everyone) with a cancer diagnosis must be in denial when they first find out. The woman with a cancer diagnosis continues to smile and go on with her daily activities because she is in denial.
Well, I don't think I am in denial, and I continue to smile. I always knew I was going to die sometime, and I even thought it might be a little early as there isn't a huge amount of longevity in my family. I still don't think it is going to be that early of a death for me, since this looks to be an early-stage cancer and there are such good treatment plans for it. But it comes as no surprise to me that people die and I might sometime. I am a little disappointed that I have a cancer diagnosis as I've associated cancer with suffering in the past, but what can I do about that? And lots of people get cancer, my grandparents died of cancer, so I'm not denying that I could have it either.
I have to say that all my weirdness and my animal-loving, vet assistant past is coming back to help me quite a bit here. I saw and assisted in plenty of surgeries, and saw the small animal veterinarians (with no special experience) removing giant tumors from dogs and cats - breast cancers included. I do feel lucky that a small animal vet is not removing my tumor or my breasts, but they did a great job of getting little animals through that surgery. So how much better must I get through mine, since I have human experts with years of experience and study behind their work? The dogs and cats most of the time did not have chemotherapy in these cases, but I will - so add another expert. The dogs and cats, with no chemo and more of a chop shop operation would often go on to live a few more years - which is quite a percentage of their lifetime. It's maybe not the best reasoning, but if I am more lucky, which I am since I am a human with good health care, I feel like I have an even better chance.
I also saw plenty of death and euthanasia...I helped the doctors find the veins, consoled the animals and their owners, wrapped up the little bodies. I've never felt I was much more important or much more advanced from any of God's creatures, and I feel like death is just a natural thing that comes hand in hand with living - for me as much as the deer that was hit by a car, or the cat who is suffering from kidney failure, or the dog with advanced cancer. First of all, I know that hearing that I have cancer is not hearing that I am dying soon, but secondly, even the thought of dying isn't something that makes me terribly afraid. I doubt I am in denial there, either.
(Anyway, it is easy for me to say this, because I know and have mentioned that the pain in dying is in leaving the people who are left behind, and the big burden falls on those who are left behind, anyway. More on the leaving some other day when I am feeling more morose...because I do have a feeling that those you love never leave you anyway, and that is a good posting when I need a pick me up if anything ever gets that extreme.)
I don't blame these writers for bawling their eyes out, crying and making scenes (they describe these scenes in their books quite vividly). I know it must be hard if you are confronting your own mortality for the first time. This just doesn't happen to be the first time I have grappled with my own mortality, or my own infallibility. I don't think it is possible to hold a living being in your arms as they pass on and to not consider your own life's end. I don't think it is possible to watch little bodies be anesthetized, cut open, sewn back together, wake up sleepy and goopy-eyed, wagging their little tails at you (usually just a tiny wag, but still) and not feel that there is something miraculous in medicine. I'm lucky I spent those years in that veterinary office. Those little tails are giving me hope that though I will probably be feeling goopy, yucky, and very sore in a few days, I'll still be able to wag my own little tail, just a teeny bit.

3/15/08

The 3-day walk

We are already at $4286.00! Thank you to everyone who has donated...it has meant so much to Bill and I to have your support. It is like opening up a present each time we receive a notification of a donation, and I am sure the support will help sustain us through the tough times ahead.
I would like to mention that there are some other very important people who are walking...I want to express that I would be grateful if money went to my teammates also.
So here are some people who are walking:
  • My mother-in-law, Sybil. I feel especially guilty about her since she gave such a big donation to me to get me started.
  • Bill's aunt Joann, a breast cancer survivor herself. She is also a nurse with lots of experience in hospital administration and she is flying in specifically to be here for my surgery (to monitor my care and be another advocate).
  • My friend and fellow mom of a second grader/brownie/soccer player, Wendy Christie, who is walking for the first time this year in memory of her cousin Carol.
  • Another fellow mom of an s/b/s, Kathy Westerlund, who was our team leader last year, and was nice enough to let me join the team.
  • Every other member of Nancy's Naughty Nockers is special, of course, too...Nancy has been helping me so much since the diagnosis, but I am so looking forward to walking with Becky, Cindy and Sarah, Ann and Shannon again...as well as meeting the new team members.
  • I have heard that there may be other people signing up, also...so if you are a rowing friend, or a high school friend, a Beverly friend, or a family member, you might have other people whose walks you could support soon! I will update here when/if other people sign up.

3/14/08

An alternate reality

Is it possible to be two people in one body? Right now, I feel like I am two people, and one of those girls is feeling good (though she is probably a little naive) and the other girl is freaking out. Surprisingly enough, the girl who has the disease is feeling fine...it's regular Pam who is having a little fit.
I bet you could imagine why...regular Pam has been around for quite a while, and she is used to things being a certain way. Then disease Pam walks in, with her sunshiney "let's make this day count" mentality. For a while, regular Pam likes the diversion and likes the new lifestyle - "there's more time for me! I feel so healthy! I'm not worrying about things as much at all with this new girl around!" But after a while, regular Pam starts to feel like she's been upstaged, she's been doing just fine without this interloper, who does she think she is, barging in here and changing everything?
The thing is, regular Pam might not be long for this world. I'm not saying that Pam in general is going anywhere...I'm just saying that my life is being changed forever by this journey. Right now I look the same and regular Pam can fit in just as she always did, I can do all the same things, act the same way, have the same conversations, run the same schedule, like the same things. But in just a few short days, everything starts and that will leave me with scars and directions to follow for the rest of my life. Disease Pam is fine with that. There is a part of me that never needed to fit in, and has always been self-sufficient and enjoyed feeling different or just like myself (maybe that Pam is the one that is coming out more now, so maybe she is not really disease Pam, but just Real Pam, and the other one is more like Normal Pam).
Normal Pam is just upset that she can't be like everyone else anymore, or slide in invisibly everywhere like she used to. She doesn't like the attention, the extra care that even she will have to take of herself. She's the one who is afraid of the effects of surgery, chemo, and all that. Real Pam kind of thinks of things as a bit of a science experiment - how often have I had the chance to be in an operating room, getting all these injections, being cut open, having weird things put in my body, seeing myself with no hair, meeting all these new people, seeing how I do with fear, with pain, with bad news, sad stories, with change? It should be all new and something to see.
So I suppose on Tuesday, I'll be losing Normal Pam for a while...but I am starting to feel like that is ok. She is a little bit boring, a little too much of a rule-follower, a little too led by what is going on around her. It will probably be a much more interesting life with Real Pam around, anyway. I'll just tell myself that!

3/13/08

P.S. - I love my oncologist

We met Dr. Jeffrey Margolis today, and it was totally great. As we walked out, Bill looked at me and said "He's a rock star." I'm totally relieved because we had met the other pieces of this puzzle and I know he's the one I'll be seeing the most...I wanted to be confident.

So here's what it looks like: He thinks I'll get 6 rounds of TAC...here's what I found about it:

TAC is named after the initials of the chemotherapy drugs involved, docetaxel (pronounced doe-se-tax-el), which is commonly known as Taxotere®, doxorubicin (docks-o-rou-bi-sin), which was originally called Adriamycin® and cyclophosphamide (sigh-clo-fos-fa-mide).

I'll have it every 21 days, and begin sometime after surgery - he estimates 4 weeks because I'm having the bilateral mastectomy and reconstruction. I will lose my hair, and I'll be tired, but I knew that. I'm also going to have a port installed (ha ha) so that the veins on my arms won't be ruined since I'll only have the one arm for blood draws, etc (after lymph nodes are removed on the right, I can't use that one as I am more open to infection, lymphedema, etc.). That may be a separate surgery, or it may not be, if they can fit it in during this big surgery on Tuesday. It seems that it might not be the plastic surgeon's favorite idea to have it installed then, though. We'll see...

It's time consuming to have cancer!

I've found that it is not so easy to have cancer and be a mother of 3 young children...but doesn't everyone already know that? I truly can't fathom what it will be like when I actually don't feel well, because I can barely fit it all in and I am feeling as great as ever. I guess I just don't have time to feel badly, so I won't (ha ha).
I should say that I am doing this totally Pam-style, which is making it fun for me (me being Pam, go figure), but is adding to the time-consuming nature of this cancer. Here is what is making this so difficult:
  1. I'm not skipping exercise, no matter what...and I love that, have wanted to get back to that, but it is so easy to skip exercise when the kids need something and the husband is tired from work.
  2. I'm cooking for a hundred people. Not really, but it feels like it because I'm making fancy special food for fancy special me, and plus I get the pleasure of making food for the other 4 people in my entourage. For me, I'm juicing in the mornings and making food from my new favorite book Healing Gourmet Eat to Fight Cancer). Luckily I have found some people to whom I can pass on some of my creations, even if I didn't follow the recipe and crushed up 2 horrifically hot peppers as a substitution. 2 Nancys were kind enough to take some of this fire soup off my hands! I am incredibly grateful because I didn't feel like eating that fire soup to the exclusion of all other things for the next 5 days. I have some questionable (I haven't tasted it yet) Triple Mushroom Soup here now, any takers?
  3. I'm using the sauna in my house. I laughed at this sauna for a whole year - who puts a giant sauna in a house? But then I read it might be good for cleansing and cancer and blah blah blah I didn't even finish reading I just jumped in! But when do I have a half hour to take a sauna? Who am I kidding?
  4. I borrowed a mini trampoline from Sybil and am trying rebounding. It's unbelievably fun. I can thank Kendra for this tip.
  5. I'm making sure I get the proper amount of sleep. Duh. I've always been the biggest sleeper in the universe, so this isn't changing things.
  6. People keep dropping off gifts! I need to call, email, thank, talk to them, bless their souls. My most recent thank yous are to my 3-day team for a gigantic gift card, my book club that I abandoned who brought over a beautiful fancy gift basket of pampering materials, and Patty, Kathy, and Kathy who brought over a Vera Bradley Backpack full of a hospital survival materials like chocolate and magazines and scented lotion!
  7. I need to send thank yous to everyone who has supported my 3-day walk! I'm over $3,000 now!
  8. I've had appointments galore...I met with the oncologist today, I have a pre-chemo heart test tomorrow, I've been to the dermatologist, the dentist - everything I need to do before I start chemo.
  9. I've been taking nature walks with all the kids and the dog in all my spare time.
So those are my cancer things. Can you see why it is time consuming? Don't worry, though. I'm only doing these things because they are fun, rewarding, and I've always wanted to do most of them (not the appointments or all the special attention). I suppose another great thing about a cancer diagnosis is that it gives you permission to do things for yourself, even if you do have 3 small children. I haven't always been great at that, but I am certainly doing a good job of that right now!

3/11/08

Random thoughts

  • Most of the time, I feel like I just have a bunch of little cells in me that went under the radar, went crazy, and need to be eradicated before they have too big of a party in my body.
  • Sometimes, though, I feel like I am facing a menacing giant (which is my mortality), and I am most definitely afraid. I'm trying my hardest to not let the giant know that I'm afraid, though, while I rifle through my bag for the best rock I can find, and hope that I have the aim of David.
  • It is amazing how close fear can be to ferocity.
  • This week, it is like I am rowing my way up to the starting line of the big race. Have I prepared enough? Am I going to be good enough, strong enough, brave enough? I recognize this feeling, though, this nervousness. Right now I just give myself little pep talks like I did before seat racing and remember this is the hardest part, just before all the craziness begins. Right now, it is all anticipation, which is worse. But soon I'll be in the race, which is easier in some ways. I remember during races, I would wait for the pain to start, and then I would welcome it - "well here you are". At least when this pain comes I'll know what I'm up against and I can show myself what I have in me that day!
  • Emma is afraid, and I am sad for her. At the start of this, Bill said "This will be hard, and it will change all of us. We would never have wanted this to happen, of course, but some of those changes are going to be for the better, and we are going to come out of this a stronger, more loving family." I'm sure he's right, but I did really want a very normal and secure childhood for my children, and this doesn't feel normal or secure. I'm just so ready for the bad stuff to start so that I can try my hardest to make this as good as it can be for her (for all of them). I've been trying all along since the diagnosis, but it feels so fake to me - like of course I can try now, I feel great, and we are surrounded by kind, loving and generous people! My future, more sick self is taunting my present, totally healthy-feeling self - "just wait until it gets really bad, and then see how tough you really are, you faker!"
  • I just can't wait to see how I do.

To: My strong Mommy From: Emma

Dear My strong Mommy
Roses are red violets are blue honey is sweet but not is much as you. I hope you had a good day! I love you! Thanks for all the stuff you do! You are so nice. I think I would like to be like you when I grow up.
Your daghter,
Emma

3/10/08

Happy to be home from "Paradise"

Apparently, The Great Wolf Lodge is paradise, at least in the eyes of a soon-to-be 6 year old! Katie was absolutely in heaven, and her parents were so pleased; she was young when we had last been to an indoor water park and we really wanted for her to have a memorable and fun time. Her younger brother also enjoyed himself immensely. On Sunday Nathan actually told me he wanted to put on his "choo choo" bathing suit - a big accomplishment for someone who is only partially verbal at this time! He must have gone down one of the littler water slides at least 50 times (no exaggeration here, seriously), and he would have gone down them all if there weren't height and age restrictions. He is a crazy boy, though, and determined to do anything he can to prove himself big.
It WAS a fun time, and made even more interesting by the fact that a 24-hour snowfall record was set while we were camped out at the Lodge. We couldn't have left even if we had wanted to - even employees of the GWL were forced to stay! We got there and left with perfect timing though; we arrived at the start of the snowfall and when we left on Sunday it was sunny and the roads were clear.
I am happy to be home from "paradise", though. It feels a little weird to be carrying around this breast cancer, knowing what is in store, and seeing life go on for all those around me. I do know that everyone has their burdens (I even saw a woman who was in the middle of chemo treatment at the park), but I do sometimes feel a little isolated nonetheless. I remember that it wasn't so long ago that I was irked at something my children did, I snapped at them for something silly, I was wearing a frown over little things - and now I am so far away from that normal person I used to be. I suppose it is a good thing, in some ways, if I am snapping at my children less!
At home, I feel like I have more control. Right now, while I'm harboring a renegade disease which produces many question marks, that is a good thing. I can control what I eat (I'm going for the healthiest eater of the year, except for maybe Emily, award) better than I can at restaurants. I can control whether or not I exercise, especially now that my retail-obsessed husband bought me a treadmill. (He wants me to be able to train for the 3-day at my convenience, so that I can raise a giant amount of money to fight breast cancer!) I can read whatever I want to with my own internet connection and computer (Bill is a terrible hoarder of his laptop in hotels, and I don't always feel like arm-wrestling each time I have a thought and want to read about it).
Home has become a more comfortable place these days, especially with more painting done and things put in order. I'm comforted to be around all of my crazy relaxing pets, my stuff - I'm not even minding the crazy ugliness of this house anymore! I feel like it is more normal for me to be me-with-breast cancer here, and I can maneuver my thought processes so that they stay positive. There's less variables, less people to get into fights with (yes, I did get into a shouting match with someone whose son pushed my daughter off a snake in the pool - the soccer parents will not be surprised to read this). I'm glad we went, but even gladder because it made me so happy to be home, to hunker down and to get ready for the storm ahead.

3/7/08

Waiting to see the disaster...

Susan (of Susan's Special Needs) kept crying while she was helping me find some post-mastectomy clothing yesterday. In doctor's offices, waiting rooms, etc. people keep saying, "but you are so young..." as if this makes having breast cancer so much worse for me. Even outside of doctor's offices and cancer stores, I have the feeling that people are looking at me, with interest, to see what disaster lies ahead. It's sort of like I am creating my own gawker situations, and cars are slowing down to look and see "What happened here? What's going to happen to that poor girl?"

I might be being totally naive, and I may have no idea of what really lies ahead here, but I also have a pretty strong belief that this isn't going to be that bad. I'm know the road ahead may likely involve pain, nausea, exhaustion, mouth sores, drain tubes draining gook out of my armpits, scars across my chest, needles, anesthesia, and things like that. I know that emotionally, I'll have road blocks ahead as well, when I take off the bandages, when my hair falls out, when I can't pick up Nathan, when my husband and girls are crying.

I just don't really have any doubt that I can be bigger and stronger than all of this. I feel like I can climb this mountain and race down the other side through all of the misery that might come with it. I even feel lucky that THIS is my trial, because I know that throughout a lifetime, there will be so many trials. I feel like this is one that I can handle. I remember, after my mom died, saying to myself, and praying to God - "OK, I think I can get through this. Just PLEASE don't take my sisters away from me, and don't take my Dad. I'll do this, but PLEASE don't take them, because I don't think I could handle that, too." It was my big prayer through all of my teen years.

I feel like that now. I can totally handle this, and am thankful that this is my trial. I don't think I'm indestructible, by any means... I still am not sure if I would stay sane through the loss of someone close to me, and am worried that when it happens again, I'll lose it. But this seems to me like just a big, hard, slightly scary journey, but I get to go through it and not watch it happen to someone I love, and I can handle that. I feel lucky about that, and sorry for the people who need to watch this - but even for them, I feel lucky because this could all be so much worse.

I'm just really hoping that Susan (of Susan's Special Needs, I like saying that) doesn't know something I don't know, though she might. More than that though, I'm hoping that since she doesn't know me, it is easier for her to feel sorry and sad. I can put on a really big and bright smile, but I also harbor an awfully tough and mean fighter-girl on the inside. She's the one who's gotten me through hard times before; I have well-founded faith in her. If only I could introduce her to the crying Susans of the world so they would stop freaking me out with their tears before things even start!

3/5/08

Business notes!

Here's the latest, in a short, less emotional format!
  • Surgery set for March 18th, at Beaumont. I'm happy with my decision, even more so since I emailed my Beaumont breast surgeon and she immediately squeezed me into her schedule so that I could meet with her yesterday and discuss my concerns.
  • We're going to the Great Wolf Lodge this weekend, for more weekend fun, pre-surgery. Emma actually asked me "Why do we have to keep going places and having fun? Why does Dad want to spend all of this money?" (We have traditionally been very big on telling the kids about how everything costs money and how it is very important to save instead of to be doing fun things that cost money all the time...I'm glad it sunk in a bit, but it was still funny to hear her ask that.) We go Friday evening - Sunday morning.
  • I planned Katie's birthday party! It is on March 16th, at Creative Arts Studio in Royal Oak (got the idea from Emma's friend Evelyn and her great party), and we are inviting all of the girls in her class...I hope some of them will be able to come. It ends up only being 2 weeks before her actual birthday, which is a nice time anyway.
  • The trim in the girls' rooms is being painted as I write this...Bill (co-owner of Anna K Studio...his wife is Anna K) could be one of the most wonderful people in the world. He took a break from another job for this week so that he could fit me in. As you can see if you click on the link, they do much more fancy work than painting horribly annoying trim...so it was even more special that he took on our horrific job. I do feel sorry that he is having such a hard time with it, but it also sort of makes me feel justified in all the many, many, many fits I had when I was painting trim throughout the other parts of the house!
  • I've been spending this week organizing, getting ready to be out of commission, and sadly, today, shoveling my annoying driveway and making my kids miserable while I did it! I told them that they had to stay outside the whole time I shoveled, so they could either help shovel and go in earlier, or have a good time outside (it's not cold, just tons of snow fell last night). Katie spent her time between shoveling and having a good time, and Emma spent her time either not shoveling or not having a good time! It was devilishly fun to be telling her that crying wouldn't help her get the job done faster (reminded me again of the rowing days). Nathan was a pretty good sport, he only fell and got cold hands a few times.
  • I haven't really started fundraising for the 3-day walk, yet, but I got some wonderful donations already! Thank you to Sybil, Grant, Kathy Cardellio, Laura Olds (a wonderful woman from a book club I am supposed to be attending...I bet NOW with my more sedentary year I'll get the books read!) and my husband. BUT, listen to this...while watching a video at UM about chemo, one woman said this: "I would go to the gym before chemo, go to chemo, and then go running!". That sounds like more than I might ever do, but still, it gives one hope. It also reminds me of how my friend Vita might go through chemo. I've never been as tough as Vita is, but I think I might just try during chemo.
That's it for now! Time to do something more fun with these kids on this snow day...

3/3/08

I've got to end on a better note...I need that tonight

Here are a few things to put me in a better frame of mind, which I so desperately need:
  1. My baby niece Natalie is showing such a spunky little personality...she reminds me of Katie's babyhood with the way her hair is now.
  2. My baby nephew Matthew is so adorable, and I am so proud of my sister Amy and her new motherhood! We had a really wonderful weekend, stayed in the same hotel as my parents, ate meals together, went swimming...
  3. Emma is reading to Katie instead of being mean to her (a little and probably short-lived victory, but still). Emma had a great night tonight at the Westerlund household, which may have helped to pull her out of the post-diagnosis slump which seems to have sucked all of her niceness out.
And one last thing...I'm going to be crazy and register for the Michigan Breast Cancer 3-day tonight. I've always planned to do it again this year (even more so before I was diagnosed, I was just waiting until closer before I started the fundraising piece). Since I was diagnosed, I thought it would be better for me to wait for all of my treatment plans are in place, to make sure I could do the training and the walking. There is probably a good chance I'd be doing chemo until pretty close to the 3-day date (late September).

Tonight, though, I need to look at all that pink and I need to make a plan, and I need to think of all that music and emotion, and 3-day stuff to make me feel better. I need to plan to walk myself right through this crazy time in my life (a nurse said today, "walk all the way to St. Louis if it will help"). Kathy also promised that the team would push me if I couldn't do all the walking myself!

I'll start my fundraising tomorrow. It should help me pass some of this time in the next two weeks, so I keep my mind off the gigantic changes that are in store for my body, very soon!

p.s. - If anyone wants to join my team, it is the same amazing team I walked with last year: Nancy's Naughty Nockers. Nancy is my role model, Kathy's energy could keep anyone going (even through a mastectomy and chemotherapy, I am imagining), and it will mean so much to me to be walking with the same wonderful women again this year. I do hope they won't have to push me, though!

Not so happy, and happy

Well, I am happy to say that my husband has finally told me that we need a break from this breast cancer thing. That is good news in that he recognizes that he needs to stop obsessing about it.

I'm not so happy to say that I am triple-negative for all of the hormone receptor tests, which leaves me with an aggressive-growth, grade 3 tumor (but still not so big - a little over 1 cm) that will not respond to any of the newer hormone-related treatment plans.

I'm happy to say that I did have my second opinion, but not too happy that now I have to make my decision. I found U of M to be a polar opposite of Beaumont in some ways - more personal in some ways and less personal in others. The nursing, support, and administrative staff seemed more organized, efficient, knowledgeable and personal than Beaumont's did (but then again, I just had the test result problem at Beaumont so that is probably coloring my viewpoint), but I still think I like the Beaumont surgeons better. I think my reasoning for why I like them better is totally wrong, but still, I like them better.

I know it is totally stupid to like a breast surgeon better because she talks to me about "curing" my cancer and talking about 50 year plans. That is probably what makes me feel better about the Beaumont doctor, but I have other reasons too: 1) She is the one who explained everything to me, not a resident as at U of M (would the resident be doing my surgery?) and 2) I've heard at least 3 patients highly recommend the Beaumont doctor and 3) I've heard from at least 3 people in the medical field - other surgeons and a pathologist - that they would send their wives to Dr. Dekhne, hands down.

I know it is also totally stupid to like a plastic surgeon because he told me he would rearrange his schedule to fit my breast surgeon's schedule, but that is also my main reason for liking him. (Though I do like the pictures of his work, the fact that his staff likes him, his clean, nice office, and just his personality, too.) Right when I was concerned/miserable hearing that 1) my cancer is a more aggressive one with the whole triple negative garbage and 2) It is hard to get the U of M breast surgeon and the plastic surgeon together and so scheduling a surgery could be a while out, I got a call from Beaumont ready to schedule me with my two Beaumont doctors of choice. This was interesting because from talking to the Beaumont's breast surgeon's office on Friday I knew that I only had one shot of fitting into the breast surgeon's schedule for that particular week, so it probably meant that the plastic surgeon did do what he said he was going to do. I know I have plenty of time to schedule all of this (apparently with the growth rate of cancers I could have had this as a teeny thing for a very long time, like years, without knowing it since I'd never had a mammogram), so I guess I don't need to rush into things, but I think it just feels better to know that someone is taking this seriously. Also, I am going to have to see my plastic surgeon a lot, so I think it would be nice to have someone that I like, a cleaner, more organized office, etc. I don't know how much "like" will play into this or should, though.

I've heard good things from too many people about the Beaumont oncologist, too...and with this whole triple-negative business I'm sure I'll need a good oncologist. So that leaves 3 doctors that come very recommended but a staff situation that might be less efficient than U of M's...but at U of M I feel like I get great staff but not the same comfort level with the doctors. So I guess I've just convinced myself to go to Beaumont. Combine that with the fact that I'd have to drive so much further to go to U of M...I'd have to have been really much more impressed to offset the whole drive since it would be so many times, and I wasn't. I guess more organized means you have to fit into their schedule a bit more than people making their schedules around you.

Whew. Not the most concise or best-written blog entry, but it was a bit of a useful regurgitation of information for me. So if I do go ahead with Beaumont, my surgery will be March 18th - 2 weeks from tomorrow. I am NOT SO HAPPY about the fact that I'll never look the same after that. I know sometimes I can be so upbeat about it, and say I'd give it all away, and I'll look better, and I'll do everything, be everything, etc. Tonight though, I'm NOT AT ALL HAPPY ABOUT IT, though I won't be changing my mind.

3/2/08

My husband's birthday

It's the eve of probably the least happy of all of my husband's birthday's thus far...he has the pleasure of turning 37 while he attends an all-day breast cancer clinic at the University of Michigan. I know I haven't been the best wife in the world so far, but this is really taking things to a new low. This totally eclipses the whining, complaining, nagging, pestering, pushing that I have done to the poor man for over 15 years now.

I really don't know what I did to deserve such a stalwart companion for all of these years. He's been the one, since pretty much the first day we clasped on to each other, to support me, encourage me, listen to me - through every hard time or joyous exultation that I/we've had so far. Through ups and downs and all of the emotional tumult that accompanies me throughout my life (I'm like Pigpen, except instead of the dirt cloud, it is an emotional cloud of both good and bad emotions, and I'm sure Bill would attest to that), he's never wavered from his commitment to me, even though my whole life I've been wavering from something. After all these years, it still astonishes me.

Bill, I've never been able to really give you much of anything in the material sense, except permission for you to buy whatever crazy thing you have felt like buying (see post indicating latest 60 inch tv). I'm not terrifically good at showing you the steadiness of my devotion to you, as you are to me (see above, emotional cloud that is always blowing us both about in good and not good ways). I do love you so much, though, and more than anything, I wish I could change this whole cancer diagnosis not for me, not as much for the kids (though it will totally affect them, I know from experience that kids can persevere, and we have such a good support system for them), but for you. I know it is so terrible for you, I know how sensitive you are, and I can tell how hard you are trying to figure this whole thing out so that we can make it through. I'm so sad that you have to spend your birthday tomorrow hearing more bad news about my stupid body which is just not performing like it was supposed to. You don't deserve that, at all, especially good, strong, faithful, extra-loving you.

I can promise though, that I will fight this so hard. And maybe all of the things about me that make me so hard to live with (how stubborn I am, how suddenly I am all on fire with excitement about something crazy and new and nothing will turn me away, how hard I like to work at things until it drives you almost insane) will maybe show themselves to be qualities that will get us all through. I guess that promise is probably the best we can do this birthday...that promise and the hope that we'll have so many more birthdays in the future. I promise I'll keep that hope going, even if I'm crying or morose like I can get sometimes. You can count on that. And maybe a delicious cake.

So here's hoping for better birthdays for my husband (and some interesting and useful information at my appointments tomorrow)...

3/1/08

Thinking about the changes that are coming...

I really do a pretty good job of forgetting that I have breast cancer...all the kids are a big help with this, plus the fact that I feel the same healthy that I have felt throughout my whole life. It is weird that I can be sitting here, just like I've been here all the days before this, feeling the same way, and yet so soon all that will change. I'll collect even more scars, I'll be recovering from surgery, I'll be doing chemo and have whatever side effects that will bring... I wonder if I would welcome all of those changes more if I was already feeling like I had cancer, instead of just feeling like I am Pam.

The part of this that is bothering me the most is the ramifications that having/treating/living with breast cancer will do for my whole life - lifestyle, goals, etc. I have always liked to do everything myself - carrying my own bags, moving my own furniture upstairs or down (pregnant or not pregnant), doing a lot of crazy hard labor in the yard. Bill has gotten used to this and knows that the best way he can support me is by watching the kids while I push myself to exhaustion doing whatever silly and unnecessary project I've taken on. It is bothering me that there is the possibility that I won't be as able as I've been before - for whatever reason. I do feel like I can give up this do-it-herself attitude for the short-term, but if anything goes another way and this keeps following me around, I'm going to be more upset.

I'm upset that some of my goals may or may not be altered - the big one is that I've been aspiring my whole life to be an old, matronly lady. I know that is a crazy goal, but my mom died at 38 and so my whole life I've wanted to live to be really old. I've been thinking my whole life that grey hair and sagginess and wrinkles would be my own little triumphs, that I wouldn't mind them so much as it meant I had actually lived a long (and hopefully fruitful) life. I know the goal and hope is that I can do that, and I plan to do that, but still it feels like getting this at 34 is thwarting the old age part of the my life's spectrum, somehow.

It even feels sad that some things I didn't want could be gone now. I have 3 wonderful, amazing kids, and I had almost made up my mind that it was time to move on and live life with these children instead of having any more children. Being the kind of person who wants to live vigorously, it was never enough when there is snow to have Bill go sledding with the kids, or have him go on the bike rides while I stayed home...I want to be doing everything and pregnancy and watching little ones stands in that way. Now that that door is closing more definitively, I'm sad about it. It's going to be a long road ahead, and even if my fertility comes back, I'll be older and I'll have no breasts for feeding those babies.

I'm not so crazy about breastfeeding that I feel like I would have to do it, and it had it's annoyances, but still, it was so easy for me that I generally always was walking around with enough milk to feed the neighborhood. I'm sad that these things that I never really appreciated except for feeding will be gone....I know it is dumb but I am almost mourning them. And I'm ashamed at myself for taking them for granted!

I'm sure all of these things have the potential to bother anyone as they grow older - the loss of some of physical ability, the idea that time is running out on some of your goals, the fact that your days of having young children or the option of having children are running out. I know some of these things bother even younger people, too - people who injure themselves in some way, people who have a physical handicap, women with fertility issues. I guess that is what I need to remember. Yes, it is still a huge shock for me that I have breast cancer and these changes ahead. Yes, it is sobering to think that there could be some limitations on the scope of my life ahead. But, I am not alone. I'm not alone with breast cancer, but I'm also not alone in being a youngish person who might now have more limited options than a normal youngish person might have.

I'll just have to count this as another one of my blessings since the diagnosis...having breast cancer has opened up my eyes even more to the difficulties that so many people face. It's OK to me if I have to learn how to face some of these issues - even if it was earlier than I would have ever expected - and do it gracefully. It was my goal to grow old very gracefully. Now if I'm lucky, I might be able to do it twice (once this year, and once when I get to be really old)!