July 30, 2010

Back home

Hi! Just a quick note to say that I'm back home, in and out of a fog but staying mostly comfortable. I'm just feeling a little out of sorts in my own skin, but no surprise there. All of my helpers are working hard to be nearby but not too hover-y--thank you to you all for getting me home seamlessly!

Now I have to figure out how to mother without arms. Supposed to not lift over 10# for 6 weeks! This is going to be very tricky...

Off to sleep on the recliner, and will get to see Dad tomorrow. Goodnight!

July 29, 2010

0 - the day of

It's 5:45pm and Jenny is resting comfortably. The surgery was longer than expected - according to the surgeon this was due to the youth and vigor of Jenny's tissues - but it went well with no unforeseen complications. Seriously folks, this woman is a trooper. She is looking just great given what this day brought her. As beautiful as ever.

We are slated to return home tomorrow if things are looking good. More updates as they come...

Thanks Bruce, Kathy, Julie and Frank for keeping me company in the waiting room, and happy birthday Frank! Leos rule.

July 28, 2010


Good day/bad day?: Well, I've had better

The day itself wasn't that bad, had an interesting day in a management retreat, but then I got home and was feeling overwhelmed and cranky. I'm ready to have this surgery over with, to get on with it and through it and come out the other side in whatever shape I'm going to be. But of course I'm scared.

One of my other concerns is when I'll be able to use my arms well again. They've said that people can be recovered in 1-2 weeks and able to do some lifting, but nobody can tell me how long it will take to be able to lift 24 lbs of wiggles. That's the hard part--this would be easier if I had an end date to when I could be lifting Olive again.

So the details: I show up tomorrow at 7:15 to go for radioactive particle injections, and then my surgery will be from about 9AM-1PM. Ben will do his best to give an update some time tomorrow, but be sure to cut him some slack, too. Hopefully just a one-night stay if no complications, and then back home to take a couple of weeks off from work. We'll just see how it goes...

I will take any positive and loving thoughts you want to send my way.

Goodbye, ladies. We've had 35 good years together, and you got to fulfill your destiny for almost a year.

Thank you all!

July 27, 2010

2 days- Fight Like a Girl

Good day/bad day?: Great

The slogan above is from a shirt my coworkers gave me today--they had a good luck/support party for me this afternoon. I have to say I am incredibly lucky working where I do and being able to do the work I do with hospice. This place has been with me through some major life events--Mom's death, Olive's birth, and now this--and I just feel good walking in the door. That, and they've been incredibly generous to me, donating time off and now today providing an exorbitant amount in grocery gift cards... I will never know who to thank individually, so THANK YOU kind, wonderful people!

It really makes me wonder where this comes from, and I'm not saying this fishing for complements or anything. You know, I do try to be a nice person, but I really don't go out of my way like many people I know. You just wonder where this outpouring comes from, try to take it with gratitude and not take it for granted, and try to do more good when the opportunity comes. It's uplifting to see the good in people in a world that has seemed meaner and meaner lately--maybe I should stop paying attention to politics and the resurgence in overt racism!

I was also in a bit of a froth yesterday for a while and restrained myself, so it was good to have today to lift me up a little. I had a comment to the effect that maybe this cancer happened because I wasn't right with God, wasn't religious enough in the "right way"--at least that's how I had taken it at the time. So I was a little worked up. Then I've had plenty of religious and spiritual people counter that and cool my jets (even if they didn't know it!), so I'm good! Just to say, not because I need to defend anything I do but just to let people know where I'm at, I have a lot of spirituality in my life, but I have not and probably will not pursue being part of a church. I have meaning in my everyday and do my best to remind myself of the simple ways to live a life of integrity and respect. I falter as anyone does, but I am trying to not play the "Why me?" game with this. I've seen others writing about cancer say "Why not me?" That's the good thing about hypothetical questions...

We got the living room rearranged tonight and the recliner in place--let the falling asleep in front of the TV begin!

So, one more day of work, and then the real fun begins! I'm okay with it right now. Ask me again tomorrow.

July 26, 2010

3 days left--taking stock

Good day/bad day?: Both

This is an old picture of me being pensive.

I had a nice, leisurely day to catch up on running around for errands. Had a lovely breakfast--thanks, Mia! Then was looking at a couple clothing places for things that button up the front for post-op wear and things started to feel sad and very real. Went and bought the recliner, too. I also had a chunk of time to do more reading about surgery and review my choices thus far. Thursday's coming up fast, and I just don't know how to get ready for it. Really, what do you do?

On another note, just a little thing about me and my boobs. I think they're doing their best to help me out. It was hard to face weaning Olive, but since I was so sore with it, I couldn't hold her as much for a few days and I think that made it easier in some ways to make the transition. Now that she's been weaned for a few weeks, I'm flat as a pancake and I'm trying to think that it's their way or getting me used to the idea of being completely flat. Thanks, ladies! That said, I don't know if it's because they've gotten so small or what, but the tumor feels like it's gotten bigger and is a little sore (never had been before). As nervous as I'm getting about the surgery, I guess it's more incentive to get it removed.

Thank you for everyone making all the lovely gestures you've made thus far--it would take too long to go through right now, but I intend to catch up with that in due time...

Yesterday Julie & I went down to Kenosha to see Gram. I needed to lay eyes on her before I start down this path and won't know if I'll be up for the drive after surgery and chemo. Wish I could be there all the time.

Oh, and happy birthday a day ago, Jeff! You're a fantastic brother--almost have made up for all those years of torture...And thank you for the Lombardino's dinner, too, Julie!


July 25, 2010

4 days to go

Good day/bad day?: Good

but now I'm exhausted, so I'll update you tomorrow. Goodnight!

July 24, 2010

5- Happy Birthday to Me, Pt. 2

Good day/bad day?: Good

Well I tell ya what, that husband of mine sure is something! So guess what my birthday surprise was. No, really, try and guess.

This is me ordering breakfast, oblivious of what lay ahead...

I've said to him a few times before that if I had the time and the money (or wealthy benefactor) I always thought it would be cool to learn how to fly a plane. Well, he set up an introductory flight class for me! It was about 15 min of classroom about what to pay attention to (and what not to do), and then we went out for a 30min flight with me at the controls for all but the landing. I still have some work to do on taxiing in a straight line, and at one point I had to loosen my death grip on the controls, but I think I did well! Brave, brave Ben, not a fan of the heights, was along for the whole thing to document. So how was it? Fun, scary, not at all like I imagined, and pretty cool. Would I do it again? Potentially yes, but it certainly takes a lot of the things I mentioned above (time & money), so maybe some years down the road...

Allow me to provide more of a photo essay:

Me not believing that I'm doing this.

That's a nervous smile

That's a little more obvious nervousness...

One of the more banked turns I did

What Olive did with Aunt Julie, accomplice...

Yep. AND, I got to go out for super-duper delicious dinner at Lombardino's--thanks Jeff! Great to see him and Andrea, who's been so great sharing her experiences with me after my diagnosis, as well as Julie, Frank, Ben & Olive. Then I was tired. The end.

Happy Birthday, Jorl! Sorry I missed your party.

July 23, 2010

6- Happy Birthday to Me, Pt. 1

Good day/bad day?: Good, thanks to all you lovelies!

Thank you to everyone who made my day special. Today was meant to be an ordinary day with more b-day celebration tomorrow, but there was certainly a lot of recognition from coworkers, family, and friends. And now I still have to wonder what my surprise from Ben is all about--have to wait 'til tomorrow! ( I haven't even tried to snoop and figure it out.)

I worked a partial day, then treated myself to coming home early to take a nap--the greatest gift of all! Then Olive time and dinner with Ben, and Olive & I went over to a friend's from work to talk about baby stuff--she's due soon and not sure what to do with all the mountains of stuff you get, so I got to sound like an old and wizened pro... It was nice. A couple of phone calls with lovely people, and looking forward to catching up with some more tomorrow, including Gram, who I'm hoping to visit Sunday.

So, a good weekend ahead of me, then back to reality unless I take Monday off... Feeling much better after last night, too. I needed a good release.

I guess I should be working on a little self-inventory to figure out what 35 will mean to me. Any ideas?

July 22, 2010


Good day/bad day?: Good but then sad

I had a good day at work, including a lovely team lunch (mmmmm, Indian), aside from ending the day with a couple of tornado warnings. But I am realizing that I'm not going to be getting a few goals accomplished before I'm off. Speaking of, I talked with HR and am well-covered for any leave I need to take, so that's nice.

Had the baby shower after work and had fun, though I know Joanna has to be sick of my advice by now! When I'm opinionated, I'm very opinionated...

Then some of it hit me tonight as Ben & I are struggling with all we have had to decide and all we have to arrange for the near future--a little overwhelming. It's really hard to get excited about turning 35 when it's a time that a lot is being lost, esp a lot of future choices. I think it's one of the few times I've really sobbed since my diagnosis. Right now as I'm writing I'm fighting the instinct to try to put a positive spin on things and find the bright side--it's really hard to just give myself permission to feel this way and not try to talk myself out of it. Maybe I don't know it and I'll magically figure it out tomorrow with my new age! Sigh. Goodnight.

Today's arrivals

From Jon, a stuffed lion hugging a wind up crab to death. You just had that stuff laying around, huh? Thanks for this, and all of the music, books on CD and the beans!

A box of fairytale brownies from Alan and Shelley - there used to be more in the box but they have gone to a better place now...thank you!!!

July 21, 2010


Good day/bad day?: Mostly good

Just a quicky tonight--again, way past my bedtime once Olive's in bed and I get my chores done!

Nothing major today, but got to see both sistas and have a little time to catch up with Mary--very nice. Took some time to walk through the genetic info with her so she's able to have a good picture of what I know. And Julie was kind enough to come Olive-sit tonight so Ben & I could get dinner and run errands. Picked out a recliner--my lovely family (Jeff's idea) want to get me one to sleep in post-op to be comfortable!

Tomorrow should be nice--a going away (for a coworker)/birthday Indian buffet lunch, then baby shower for another coworker after work. I remember those days...

And that was still with 2 months to go!

July 20, 2010


Good day/bad day?: Ran out of steam, had both good & bad components.

Olive was up the last 2 nights in a row, which is unusual for her--coughing herself awake. I took her in today since it kept getting worse, and she has an upper respiratory, eye, and ear infection. Poor kid! It doesn't tend to slow her down much, but she did cap off a lovely bedtime bottle by projectile vomiting all over me. Ah, motherhood! Everyday is like a Hallmark card...

Not a whole lot of developments today on the cancer front--most of the next week will just be getting the rest of my life ready for what's to come. I did have one unexpected thing in a call from my OB/gyn. I left a message with his office last week just with an FYI and talked to his nurse, but he decided to call me and talk through some of the other issues involved with the fertility issues, ovarian CA, etc. I was never sure how I'd warm up to him (kinda nerdy and awkward, not oozing charisma) and was expecting to switch to a nurse midwife when I had Olive, but I had some issues and he just called to check in on me a few days after some pain because he wanted to be sure I was okay. Same kind of call today, very sympathetic and wanting to be helpful. Gave me a good recommendation for a gynecological oncologist. He also said that when he heard, he was trying and trying to think back to my last appts and breast exams with him and if there were any lumps (there weren't), worried that he missed something. He didn't. It's nice to have doctors invested in your well-being!

I don't think I've talked about it much, but the next concern down the road after treating this CA is the increased risk of ovarian CA with the BRCA1 mutation. The typical recommendation is for removing the ovaries, preferably by age 40 because there is is no good screening for it, and even people who are being closely watched have their cancers found at advanced stages. If you'd get to pick the kind of CA you'd get, this would be one of my last choices! So, there's a chance the chemo will put me into menopause anyway--sometimes temporary, sometimes not--but then I'd be thinking about when to choose to go into it. Weird, huh?

I guess a lot of the decisions I'm making are different than what other women in the same boat would do, but I don't know how well it would sit with me having big risk numbers for both more breast and ovarian CA and just waiting for something to appear. I think it would almost feel inevitable. Rather than go through the wondering, the rounds of scan and biopsies and the potential for more treatment, I need to do what I can to get this done and get back to focusing on my family and the other things I love.

Hope that makes sense. It does to me, and I guess that's what counts.

July 19, 2010


Ah, sweet coping mechanisms!

Good day/bad day?: Good

Long AM at the hospital for pre-op teaching and tests and for a heart function scan to make sure I can tolerate chemo (all looked well). I was issued a camisole for the surgery to hold my drains in, and I did a little consult with one of the prosthesis fitters. She's an RN that changed to this job, and she shared with me that she has a 35yo friend that has just gone through it too, also with young children, also genetic, and also chose bilat mastectomy. She had originally started the initial reconstruction with implants process but had complications and decided she was happy with no reconstruction. Nice to hear that. AND, I saw a swimsuit I really like (made to hold the fake boobs)! There is hope! Oh, and I get a set of new boobs every 2 years.

I also booked an appt for placement of a port for receiving chemo and meds and having blood drawn. I figured I might as well save my vein, since I'll need them for a long time. It'll be Aug 12th, same day I sit down with the medical oncologist again to figure out the chemo regimen.

This will be a really weird week or so at work because I'll be pretty distracted, and it's hard to dive into anything when you know you'll be out of the loop for a little while. That, and there's a constant stream of sugar coming my way--thanks everybody!

Looking forward to a few things this week--seeing Mary (sister), Jeff (brother), baby shower for Joanna, and (drumroll) birthday surprise! Don't know if it's an event, an object, a concept... total surprise, 'cause that's how Ben likes to operate. He thinks it just kills me to not know, but I've let that go a long time ago. But it's lovely that he puts so much effort into it. Next week we'll try to work in a Restaurant Week meal if we have a sitter, and I have a full-day management retreat at work the day before surgery.

I don't find out the surgery time until the day before for anyone about to ask.

Here's hoping Olive sleeps well tonight...


Changing the discussion a little, I've had people ask in roundabout ways why I'm not having reconstruction, so I thought I'd dive into that a little more. It makes sense to me because I've been at all the appts and had the discussions, but I also realize that there's probably the sense that I'm young, I'm in the prime of my life, wouldn't I want to have the physical difference be minimal? Well, there a couple of thoughts in play for me. For one, I wasn't given great reassurances by the plastic surgeon that reconstruction would go very well for me, especially depending on if I have radiation. Any reconstruction they could offer me would involve implants since I don't have enough tissue to make boobs out of that (i.e. the "tummy tuck" reconstruction). Implants come with their own potential complications, esp again with radiation. And then there's the aesthetic piece both for me and Ben--don't know if the foreign objects would ever start to feel more integrated or if I really need that to be added back to me. Plus, the surgery and recovery would be more involved and multiple follow-ups for stages of reconstruction.

So, that's the gist of it. In all honesty, I was going into the plastics appt hoping that I'd have better options, but they can't b.s. me about what doesn't look like a good option. As my oncology surgeon said, as long as women go into it confident of their own decisions, it works out well no matter which direction they go. I'm confident that the double mastectomy is the right choice for me in my particular situation while wishing that it was a different situation and a different risk profile.

I am also trying to anticipate how weird it will be to wake up after surgery and have nothing there anymore. I don't know how that will compute. Opting for reconstruction is always an option down the road if I just can't acclimate to the flatness. And yes, I'll have prostheses to wear to make clothing look right, etc.

This all brought up an interesting question for me today--Does this mean I can legitimately go topless now?

Ben also proposed a series of temporary tattoos to replace nipples...

TMI? Sorry, but I get to be as honest as I want here.

July 18, 2010

Back in the saddle...

Good day/bad day?: Good, or at least much better.

Ben got back from camping smelly and in a fight with his motorcycle, so that's the drama of the day. But then we went out for brunch and later I went dinner and a movie with a lovely group of women. Oh yeah, and Olive is no longer hot. But she really fought going to bed tonight. The end.

Except Ben & I started talking more about what we're facing now that we've got real live things happening soon. We're starting to talk about what tangible help we're open to accepting, so we may be in touch with you soon... That, and we've got a daughter turning one soon, so we've got to try and figure out what we do to celebrate while I'll still very much be healing. We're heading into Leo Birthday Season here, so we've got a big run of them to consider including Olive, me, Ben and a handful of other family and friends.

We also talked about things we both should and shouldn't be talking about, i.e. Ben walking ahead in his mind to what might happen if he loses me. There's not much else I can say about that. It's both touching and scary at the same time to have your partner talk about how he would have to go on without you. Doesn't mean we're not optimistic, but we can't be ignorant, either.

July 17, 2010

Emphasis on the crabby...

Good day/bad day?: meh. I tried, but it wasn't awesome.

I went on an unexpected detour this afternoon and realized I'd done too much when I should have been napping. When we got home, I thought Olive would sleep more so I could, too, but she was wide awake so I got cranky. Sorry Punkin, you're not as bad a dog as I made you out to be!
I've been meaning to give her a shout-out anyway...

So yeah, I keep trying to look like I'm doing well with everything, but then I take it out on the dog, stress eat, am tempted to do some retail therapy, etc. I don't know, I think I may need a couple of days of not talking about it much. Of course I say that and I'll be the first one to get talkative about it.

I guess I'm overwhelmed, in both good and bad ways. The bad is obvious--I have cancer, I'm having a more "drastic" surgery to reduce my risks, I still have many more nuances of this to think about in the future, including even more treatment choices.

The good is more that so many people want to help and anticipate how to help, but I don't know what I'm going to need, what Ben & Olive are going to need, and how we'll be at accepting help. I know it makes it easier for everyone to have a job to do and to know when to do it, but I can't be that helpful yet. Ben & I will keep talking and figure out where we can let people in, and we'll let you know, but it's going to be a few more days of processing, first.

Oh yeah, and Olive has a fever. Gotta decide if she needs to be seen tomorrow or we can just ride it out--she's had a low-level respiratory thing this whole week and was hoping she'd get through it quickly. Poor hot baby!

Again, too late in the day for the profound. Maybe tomorrow. 'Nite!

July 16, 2010


Good day/bad day?: ooooo, this is a tough one

I was fully prepared to say bad day, but I've also has some lovely glimpses of good day--I think of it similar to partly cloudy vs partly sunny.

So, the biggest part of the day is that I have a surgery date--July 29th, a Thursday. 13 days. I'm already alternating between freaking out and being totally fine, but people keep telling me I'm supposed to be doing that.

Julie came with me today to meet with the surgeon, and after a healthy wait, we talked a couple different scenarios through. I will be having bilateral mastectomy, axillary node dissection on the R side and sentinel node biopsy on the L. She's told me she will try to have me be as "smooth" as possible. I don't know if that sounds appealing, but I appreciate what she means. No reconstruction. Just one night in the hospital, then 7-10 days to get the drains out. I'm hoping to be better enough to fully participate in Olive's 1st birthday celebration! This may be a little preview:

I guess I'll try to enjoy 'em while I've got 'em.

The good of the day lies in having some lovely conversations with some lovely people and getting some delightful news from a friend. I also felt like reaching out a little and found a few old friends on Facebook. Olive and I had a good night together, but now she's waking herself up coughing...

So come one, come all, to join me on my roller coaster ride of anticipation until the tangible events of this cancer start to unfold. I had a lot of really profound thoughts earlier this evening that I swore I'd share with you all, but now I'm tired and past my bedtime, so they're totally gone. Funny how that keeps happening!

Jerkin' tears

Our song, referenced in the previous post:

Now let's see some tears, jerk.

July 15, 2010

My Better Half

Good day/bad day?: Good day.

Since I spend way too much time talking about Olive like the proud mama I am, I thought I ought to give some due time to the one who puts the "mania" in Erdmania. (Here he is both with quercus and at full whisker).

He thinks I take him for granted all the time, but I know how lucky I am that we are still gaga for each other. How many other men do you know that, when discussing surgical options, would rather have me flat as a board than take the opportunity for an "upgrade" to, say, a C cup? I guess we both know that the world has not just handed us anything and we've worked hard to be happy where we are, so this CA is just another typical Erdman adventure...kind of like how our road trips turn out! I truly have no doubts about where we stand with each other and the respect we have, and that is a huge gift at a time where I'm questioning so much. I would play our song for you now and it would make me cry, but I don't know how to throw that in the blog yet.

Today was teaching a class at work that I think went well, getting a piece of good cake, then coming home and going out to the Dane for dinner. Olive was showing off her knowledge of gravity and the sweet waiter kept trying to keep up with everything she decided to throw on the ground.

Tomorrow will be sitting down with the surgeon again, this time with a lot more details about my CA than we had the first time we met. Ought to be interesting, and I may even make some decisions about a date. There's still my internal debate going on about surgery first vs chemo first, but I think I'm leaning toward the surgery first so I can still be part of a clinical trial for the chemo--might as well let others get useful info out of this!

Then the weekend....as Ben goes off to go camping and it's just me & Olive. Maybe I'll get some thinking time in, but I won't count on it.


July 14, 2010

Pink Ribbons

I just wanted to say something and I hope it doesn't sound snotty at all. I know there are a bajillion pink ribbon things out there to support breast CA awareness/research and I don't need to tell you what causes are near and dear to you... BUT, I have had enough contact with CA patients that don't do well and oncologists that treat them to know that there are much deadlier cancers out there (pancreatic, head/neck, ovarian, etc., etc.) that don't get as much attention. Please consider, if you're interested in fighting CA, to donate to an organization that supports research for all cancers, like the American Cancer Society. Thanks.

If I only knew

Good day/bad day?: Good day.

Things went along pretty well today--normal work day, a little more tired than usual when I got home. Then I was giving Olive her bedtime bottle--she was really sleepy, barely opened her eyes through the diaper and PJs--and she just opened her eyes really big and was studying me. There was a look in her eyes that I'd never seen before. They looked much older and wiser than her 11 short months. I don't know what it was all about, and it only lasted a minute, but I felt the greatest direct connection I've ever had with her--usually it's just me looking at her and sighing about how lovely she is while she's oblivious (and picking up dog hair to stick in her mouth). Again, there aren't other words to put to it, but I have the feeling that this journey to come is going to teach me a lot about really being a mother. I'll let you know when I know what that means...

Maybe something about licking more flowers. BTW, her onesie here says "mmm, boobies". How appropriate.

July 13, 2010

Endless sweets

This is a warm fuzzy cookie container given to Jenny by her co-worker Joanna. Olive is way interested in the warm fuzzies, but Jen and I are more concerned with the contents, which I'm told will be refilled when empty...

Thanks Joanna!!!

Sheesh! Way to make me feel guilty, Ben... (JK, BFF)

Good day/Bad day?: Good, then hit the wall

Thanks to the hubby for a little perspective there... In the grand scheme of things, I absolutely am lucky to not have so many other fundamentals to worry about. For cripe's sake, I have the ability to blog about my CA instead of working my ass off for $7 a day--I have the luxury of being self-indulgent. Maybe that Oprah was on to something with the gratitude journal deal...

That said, I will still have some less than perky days. Case in point. I worked a full day and actually spent most of the day doing things and plugging along. I talked to the med oncologist on the way to pick up Olive, so maybe that made me more serious. Nothing majorly surprising, just confirmed that my lymph node biopsy was positive for CA, too, and talked about the pros and cons of switching the traditional surgery then chemo timing. There's no right or wrong way to go in their minds, which is reassuring and yet doesn't help the decision-making process.

Maybe I'm just tired--been up later the last week or so. Maybe (well, yeah) there's a little grieving going on, which I know I always feel physically. I can't remember who I was talking to about it, but some days I feel with this diagnosis the way I remember feeling when my mom was dying and after her death. It's a heaviness, and a feeling like you're a little alien as you move through the world and watch the ordinariness of many other things around you. On the flip side, it makes you realize that anyone you meet could be in a similar place and have the world on their shoulders. This is all an ongoing exercise in perspectives, isn't it?

My arm and shoulder also hurt on the CA/biopsy side (node biopsy made me more sore than the breast one) today, very achy. It makes it uncomfortable to hold the bebe for too long. Boo.

There's plenty more I could talk through on any given day, but I'm going to sign off now and brush my teeth (lots of cookies--thanks Joanna!). Sweet dreams!


On PBS tonight there was a story about a Guatemalan woman who had cancer. Her son had traveled to the US to earn money for her treatment working at Agriprocessors in Postville, Iowa. But on his first shift at the meat packing plant, he was caught in a federal immigration raid, sent to prison for several months, then deported. He borrowed money to make the trip to America, so in addition to being back where he started without earning anything, he was in the hole to the tune of $7000. He could only make about $7 a day in Guatemala to feed his four children, wife and mother and make interest payments on the loan. Meanwhile this huge lump on her shoulder continued to grow. There was no money left for any kind of testing or treatment, and the son was resigned to just being there for his mother when the end came.

So I was watching this and realizing that we have it pretty good. Americans in general have it pretty good. There are far worse places on this planet, and why that is tolerated I don't know. But what I do know is that Jenny and I are fortunate - she has cancer and that sucks, but...

...we live in a place where the best care in the world is readily available.
...we have the means and the insurance to pay for this care.
...we have a truly awesome family and network of friends.
...we have each other.
...we have Olive to make us smile.
...and a million other reasons why we have it good.

I only wish that everyone could enjoy what we are fortunate to have.

The Guatemala story is here.

July 12, 2010

Silver lining?

This is what I hate about this so far:
  • had to quit breastfeeding in a day. not fair and painful, and Olive and I had been sailing along for almost 11 mos.
  • lifting restrictions for 24hrs after biopsies--no baby holding!
  • it makes me feel guilty for having a daughter
  • I get too matter-of-fact sometimes and can't even register how upset I am
  • I have to make decisions that are irreversible--Do I like having boobs? How do I know until I no longer have boobs? Am I ready to be in menopause? Are we done having children?
  • I don't ever get time to read much in any waiting room magazines
I'm trying to think of a few positives:
  • supportive people coming out of the woodwork with helpful offers (like babysitting and a steady stream of sugar!)
  • checking in with people I love & miss & don't get to talk to enough
  • I'm hoping that the hair loss from chemo will cut way down on my shaving and plucking time--you laugh, but if you know my lifelong struggles with abundant dark hair...
Okay, this was good practice for becoming chatty. Time for bed.

Oh yeah, I've given Ben permission to post motorcycle pictures on here when he needs to lighten it up and make it "bloggier".

Here, are you happy now, honey? Mwah!

Allow me to jump in...

Hi, all.

For those that haven't followed my time on other modern communication tools (MySpace, Facebook et al.), you may not know how bad I am at sticking with any solid form of correspondence. Of course, for those of you who've known me long enough, you also know how bad I am at the old-timey kind, too--thank you notes, I'm talking to you! I mean to do my best at keeping this timely and relevant, and I have my trusty Renaissance Man to fill in the gaps when I just need to go to bed.

So, to give the fullest current picture, I'll spew out the rest of the facts as I currently know them. I have, at the lovely age of 34, been diagnosed with invasive ductal carcinoma. It is ER/PR negative (hormone receptors) and Her2/neu negative, or what they call "triple negative". I have read in some sources that this is a more aggressive type of cancer (to be abbreviated CA by me, 'cause that's how we do it in the medical world) with a poorer prognosis, but there are a lot of other factors that lead to that point. It also tends to respond better, paradoxically, to chemo, which will be a definite part of my treatment regimen.

I've talked with the family about the genetic testing, so I feel comfortable sharing that my cancer is related to a BRCA1 mutation that is the same as one my paternal aunt Kathy had. Again, there are implications for the family for their risks, but I feel that is a side discussion to have with them. For me with the known mutation, it increases my risk of a recurrence or a new CA in the other side dramatically, and it also comes with a significant ovarian CA risk. These pieces will play a major role in the surgical interventions I choose and some other major life choices, too.

What else do I know? I've had an MRI that showed my L side is clear (whew) and the R tumor is about 3 x 1.5cm. There are nodes that look "suspicious" on ultrasound and MRI, so I had one biopsied and should get the results tomorrow. My reconstruction options would all have to involve implants unless I gain about 20 lbs, and I'm kind of weirded out by implants so would probably opt for no immediate reconstruction with the surgery. I've got a few more consults/return appts to talk through the options, so I'll keep you posted as I try to make up my mind.

Blah, blah, blah. That wasn't anything fun or interesting. Let me work on it.

I'll throw in a picture of Olive in the meantime...

This is what she thinks of cancer:

I agree.

July 11, 2010

Cancer Vixen

A card from Jen's co-workers. Seems about right.

First big update

This is slightly dated now...a letter Jen wrote to family on July 2:


Well, it's been a busy week and I'm still trying to catch up to it and digest everything, but I thought I'd give you a little summary of where we're at. So biopsy results were last Friday (just preliminary, invasive ductal carcinoma). Monday was surgical onc and the nurse practioner to talk about various options for surgery, etc., but the bottom line was that they didn't have good enough pictures (because of breastfeeding) to really definitively walk through a game plan. The lump I felt is about 1.5cm and closer into the chest wall on the R, and about 3 cm away from that lump is an area of calcification they are wanting to know more about. As far as they could tell, the L side is clear but again they want better pictures. Tuesday was supposed to be an MRI and ultrasound of lymph nodes. They postponed the MRI and told be to stop breastfeeding right away, want the MRI after I've weaned for a week to get better images. The weaning's been okay for Olive aside from one mad middle of the night, but it's been very sad and uncomfortable for me. They did the axillary ultrasound and said they saw 3-4 nodes that are "suspicious", so I am having a node biopsy and the MRI next Thursday. Wednesday, Julie and I sat down for a long genetic counselling appt and I did decide to have the blood work done, so those results take about 2 weeks. Yesterday I talked to the NP and she said they had some more biopsy info, that my tumor is estrogen and progesterone receptor negative (= chemo, tamoxifen not an option), still don't know the Her2/neu status yet that may target the chemo more.

So, we know some more but not all, still waiting for the last of the biopsy markers, the MRI, the node biopsy, and the genetic testing to come back. After that, I can sit down and have a better basis to make my surgery decisions, along with a plastics appt next Friday. They're looking to have the surgery in the next weeks, and it sounds like they'd like to step up that timetable a little from the original 6-8 weeks "urgent but not emergent". Once all these other pieces are in place, I'll hope to decide in maybe 2 weeks and then think about timing.

To come back to the genetic testing piece for a bit, I want to talk through a little more what that means to the rest of the family. Kathy had a known BRCA mutation (Aunt Linda was kind enough to walk though the family history with me and even e-mailed the specific mutation yesterday) and Judy was negative, Linda was never tested. If I test positive for the same mutation Kathy had, then it would have implications for the odds of the rest of you having it, and there is a separate possibility that Mom had her own mutation. We've all known the high-risk category the family falls under, but this may get much more detailed and I can't choose for all of you how much you want to know about it, if you would change the screenings you get and when, etc. It was a very eye-opening appt with an overwhelming amount of info. Please sit and think about it, and I will start with the approach that you all don't want to know unless you tell me otherwise. I particularly want to be sure that, Dad & Jeff, this would definitely apply to you, too, because it's not just an increased male breast cancer risk. I can walk through the numbers and risk categories more for those that want to know, and Julie took in all this info, too. Again, it'll be about 10-14 days to get the results back, so I don't have more detail now.

In the meantime, how am I doing? I don't know. There can be long chunks of the day when it doesn't even register, I'm at work and actually working, etc. Everybody has been great, supportive, flexible, and we've got about 30 new babysitting offers. One of the MDs at work gave me recommendations for the medical oncologists from his wife, also an oncologist that works in the Cancer Center with them, and he's contacting them on my behalf to tell them to treat me right! Weaning Olive has been the most emotional part so far, and then I'm guessing it will be unreal again until the surgery time. We'll still be busy in the next couple of weeks with our Chicago trip Mon-Tues, possibly still camping next weekend.

There you have it! Thank you all so much--I know you're there for me in whatever ways you can be.