April 30, 2011


Good day/Bad day?: ups & downs

We had a nice cookout with the Dittmars last night (thanks guys!) and on the way home my chest started feeling like it was on fire. Severe sunburn, pretty much. Had to sleep with a pillowcase under my shirt so no seams would rub on it. Then I woke up this AM achy and exhausted and couldn't shake the fatigue until late in the day after a long nap. Haven't had fatigue like that in a loooong time. Special thanks to Dawn, too, for helping out this afternoon so I could nap and Ben could accomplish things! But the evening has been better--Olive and I had ravioli, then dancing, a good bath and bedtime. BTW, my favorite Olive word these days is Cheerio (I have no idea to spell out how she pronounces it...)

Thanks for everyone who has expressed the same moral outrage about Olive's issue as we've been feeling. Just not cool. I can't help kicking myself for a while because she walked late (17 mos) and had a funny gait--I should have brought her in, but it seemed like she was outgrowing it and getting better at walking. Turns out she was just getting better at compensating for it.

So, in a nutshell, her R femur is out of the socket--the socket isn't well-formed and her leg has moved up above it. There are different interventions depending on age, and unfortunately she's likely past the orthoscopic surgery age range and into the open surgery range. Then, from everything I'm reading, it'll be 6 weeks to months of wearing a cast around her hips and one or both legs. That will make it a rough summer for her! We'll have to figure out all sorts of things to work around it (google "spica cast" if you're curious)--car seats, feeding, bathing, diapering, carrying her around (she's already 28# without a cast!)...Again, like I said, I'm jumping ahead of myself and it'll be a few weeks before our appt with the ortho surgeon to get the full scoop. But we're going to have a lot to figure out.

Julie & I were speculating tonight about what Olive's going to develop while she's immobile. We'll focus on getting her to read & write, maybe teach her piano and filmmaking, try to get her to start a blog...

April 29, 2011

Routine Check-up?

Good day/Bad day?: well, today's starting off fine! Yesterday...

I probably don't need to be sharing this here right now, but it's on my mind and I just need to put it out there. Yesterday Olive and I both had appts in the afternoon, me for radiation (the usual) and she for her late 18-mo appt (she's 20mos...). Routine check-up, she was very happy and silly and well, right? Then they found an ear infection that she's totally asymptomatic for. Then I mentioned off-hand that she's walked with one leg a little straighter. The MD saw it too and did an x-ray. Now she needs ortho surgery! Hip dysplasia, usually shows up earlier, but here we go. That's all we know right now until we sit down with the pediatric ortho surgeon, so I'll avoid conjecture at the moment (even though it's happening in my head...). Ugh.

So Ben & I are feeling a little victimized by the universe right now, a little pouty. No easy summers in Erdmania.

Day off for me, so I'll just enjoy the sunshine while it lasts

April 27, 2011

Take care

Good day/Bad day?: okay

A busy week, and feeling low-grade/dull. So I'm going to take to heart the comments from the last post and try to do some more taking care of myself in the coming weeks. I have to admit, the messages that I hear over and over are that you feel better if you stay active, exercise, etc. But that's easy to say when there's time to do it. Makes no sense if I have to get less sleep in order to get the rest of my stuff done. Yes, I still have a hard time letting things go and accepting help. I especially have a hard time expecting Ben to pick up the slack during the week, but I am trying to and asking more of him.

So on that note, I need to go to bed and get my last busy day of the week over & done with tomorrow. Then I can catch up and think.

(Kathy--no Olive haircut, just a ponytail that stayed in for about 5 minutes...)

April 25, 2011


Good day/Bad day?: okay

It's hard getting through the days and having any useful thoughts. I'm amazed I was able to complete a handful of powerpoint slides today. But that's about it. It's becoming more profound fatigue, and fast. I get a little worried that there could be some depression sneaking into the mix, but then I don't fit the screening tools. I went to Zumba tonight to try and give me a little energy lift. It worked for the last couple of hours! But I can really only sneak it in once a week, and other exercise is hard to get in, too. Lots of logistics to deal with.

Here's me with hair returning! Note the eyebrows--now Ben can tell that I'm mad again...

Right now it's soft and fuzzy like a baby chick.

And here's Miss Olive being super cool:

We had a fun dance party on the way home from daycare today, with a mix of Bjork, the Beastie Boys, and Cab Calloway. She has a doll that she makes dance. She is also a big fan of putting dolls/stuffed animals to sleep (tucking them under a blanket) and then yelling her version of "Wake up!"

April 24, 2011

Happy Easter

Good day/Bad day?: not sure

It was a nice Easter with the in-laws, but dang, was I tired. It was an okay weekend, but I was off-schedule with the whole thing and didn't really much time to recuperate. I'd been hitting the wall in the evening for a while, but today I was finished before I even started. I hate it, because I lose the brain power to creatively deal with Olive (we're constantly playing outsmart the toddler here, and it's not easy!) and just start shutting down. Not excited about 3+ more weeks of this.

But Olive rocked the egg hunt! And everyone else picked up my slack...

April 21, 2011

Home Safe

Good day/Bad day?: okay

The morning started with a multi-tantrum bang, but then the day improved for all. Ben got home in one piece tonight, and thanks to Gene & Kate's meal delivery I got to hear Olive attempt to say enchilada--"each-ah-la" is about the best I can describe it. Very tired. Very, very tired. But day off tomorrow...

April 20, 2011


Good day/Bad day?: fine but tiring

...that I'm laying on a tropical beach on a sunny day with my arms stretched up. The sand is white and pristine, the water turquoise blue, a gentle breeze is blowing, palm trees swaying, there's a fruity drink by my side. Maybe I'm in a hammock, maybe not, but there's at least one around.

This is one thing I try to visualize during radiation. I figure if it's radiation, it's much happier to imagine it's radiation from the sun that feels good. Sometimes I imagine that I also have grapes on my chest (the cancer cells) that shrivel under the sun to raisins. Then sometimes I just think of the word apoptosis...I find it pleasant. For some reason it's a lot easier for me to visualize with radiation than it was with chemo--then all I could picture was rivers of red poison (the one drug was dyed red). Not very healing!

Cut Olive's mop down tonight, at least her bangs. I need a professional for the rest! She was repeating almost everything I said in the car today, some of it very well. She wants to say mango at dinner, too, which comes out "nee-moo".

Night night.

April 19, 2011


Good day/Bad day?: eh, busy

Just can't tell if I'm tired because I'm a busy working mom of a toddler, or if this is the super-deluxe radiation kind of tired. I guess it doesn't matter. My chest is starting to feel a little more raw today, too.

Today was the changing of the guard for helpers--thanks to Mary & Addi, and welcome as always to Julie! The three of us ladies (with Olive) had a silly little dinner together, then watched some Pee-Wee and called it a night. It was good.

Ben had made his way to MO, and it looks like a change of itinerary is in store from there. I won't elaborate on the details, he's okay, but he had a frustrating day. Send some positive energy out to him on the rest of his journey...

I'm going to apologize because I'm going to have a busy next week or 2 and won't be very focused or profound in my posts. Mostly business. I'm very aware right now of all that I wish I could just be doing normally instead of making all these concessions, having all these damn appointments, etc. I feel like I'm getting nowhere fast in the rest of my life. Wait, actually getting nowhere fast might imply that I'm staying the same instead of getting more and more behind...

I just need a magical trip to a tropical island to appear on my doorstep (though going on vacation wouldn't make me less behind, would it?). See, if I say/write it, it will manifest. At least that's the gist of what I've heard from all that "The Secret" stuff. That's really the extent of what I know of it. Works for Oprah, right?

April 17, 2011

Buh-bye, honey

Good day/Bad day?: Good

It feels like Saturday. Which isn't good, because tomorrow's Monday and there's no getting around that, is there? But I got an extra day to hang with Ben before his trip--the weather was crappy enough that he waited until this morning to leave. All went well for his first leg...

Aside from the bad weather, a good weekend all around. Mary and Addi are here to help through Monday night. Happy Birthday, Addi! I don't know what it is that makes my nieces want to be with their lame aunt for their birthdays, but this is the second one... We hung out at home, went to the playground with Olive for a while, then Addi & I went to a movie and custard stop while Mary babysat.

So we'll be starting radiation week #3. I'm starting to get more sensitive skin, esp on my sternum. You can see exactly where the beams hit because I'm getting tan/burned there with a clear border. It's weird and really unattractive--well, that plus the shiny goop I put on it and my compression sleeve and glove. I really know how to make an impression! Ugh, just sick of all this nonsense.

Oh, but hey, I won a cake at work! The universe threw me a little bone.

April 14, 2011

Good night

Good day/Bad day?: pretty good

Various appts and a little bit of work, then Zumba. Easier day than yesterday, when I hit the wall hard in the evening and was super fatigued. At least it's still fluctuating and not an everyday thing (yet?). And at least I have tomorrow off!

I have a problem where I keep forgetting to wear my compression sleeve. Wishful thinking. The whole lymphedema thing is just a bad reminder that even when I'm done with radiation, this is still a life-long chronic condition. I can expect to feel better, sure, but I can't expect to ever be "done" with it--it's impacted too much of my body and my life.

The Komen Race for the Cure is coming up soon in Madison. I've had people ask if I'm doing it. Not this year--I think I'll just be recovering from radiation and might want to take a step back from it for a while. I know I had my little pink ribbon rant and talked about doing things for all cancer, not just breast cancer before. Well, I can't begrudge Komen how they've built awareness, and they certainly do good things. I had some of my acupuncture treatments paid for by vouchers from them, and they work hard to get mammograms/screening for low-income women. So if you're walking/running, I support you. Think of me and feel good about it. Thank you.

Hair is coming back in earnest--I had someone liken me to GI Jane today. Though of course to balance that out I had a cashier call me "sir". Great.

Weekend's coming, and I get some sisterly time with Mary & niece Addy for a few days (to help while Ben's gone) and Julie after that. Lovely! And it's always nice having extra hands when Ben's gone (it especially makes it easier to get out the door in the AM)...

Okay, bedtime. As Olive would say, "Ny ny".

April 12, 2011


Good day/Bad day?: Good

Not particularly productive, but good. Just at work for a few hours, then off to appts. First was OT to check up on my R arm swelling and range-of-motion issues. The swelling has gone down, though still has a little ways to shrink to move from "moderate" to "mild". Despite the bad day last week with arm pain, my arm movement has improved a lot. But I still have to do exercises a couple times/day, lymphatic massage daily, wear my compression (super sexy) sleeve and glove except while sleeping. I'll go back weekly for a few more times and can hopefully drop some of this soon.

Then ultrasound for the ovarian cancer screening. Nothing big about having that done, certainly not my first, but this was the first time that I was actually nervous about what they might see. I also didn't get the results right away and will have to wait to hear from the MD. Then radiation.

So I get weighed every week with radiation. It pains me to say that it even feels like an issue to me, but I feel bad that I've gained weight. Not majorly bad, but since probably November when it was at its lowest I've gained about 15 lbs. You see, I've been taking this whole cancer thing as a free pass to indulge myself. At first it was because I wanted to regain some of the weight, and then it just became about instant gratification. Bakery! Sugar! Bacon! I know I need to start reining it in, but I'm going to need some help--not like naggy help, but encouraging/joining me in better choices. Those delicious empty calories are empty even when you have cancer...

After hearing it once, Miss Olive gave a great rendition of "pizza". "Table", too, as she insists at sitting at it with us now.

April 11, 2011

Lighten up a little

Good day/Bad day?: alright

The day wasn't as heavy as I thought it'd be. Don't get me wrong, I'm still worn out. But the gyn onc appt wasn't too bad or long. Overall, it was Ben & me being told that any decisions about ovaries, another kid, etc. are ours to make, and that we don't have to make them on any timeline (other than the recommendation that the ovaries come out by 40). There's still a lot they don't know about BRCA mutations--she said nobody's really asked her if getting the breast cancer makes the ovarian more or less likely, and it'll be a while before more recent studies could answer that question. So in the meantime, I start my every-6-mo ovarian cancer screening--blood drawn today, ultrasound tomorrow.

Hey, guess what! I'm no longer menopausal! I thought the hot flashes had tapered off over the last couple of weeks...

Skipping Zumba tonight, but I'm going on Thurs. I was even ambitious enough to buy a 10-class pass. Ben's getting ready all week for leaving Sat and is dashing around the house crossing things off his list.

Olive & I were talking about ducks on the drive home today and quacking again. Then I asked what her favorite animal was and she said "Baa!" Good to know.

April 10, 2011


Good day/Bad day?: little bit of both

Overall a good weekend. I wish they didn't wear me out, though. Not sure if this is the true start of the radiation-related fatigue or I'm just tired because Ben & I went out for a while last night (but home by midnight). It feels different, like a heavy kind of fatigue, and that worries me because I just finished week 1. (And I have the faintest start of a tan on half my chest...)

This week is gonna be busy. Tomorrow itself is a doozy--I've got like a long appt in the morning with the gynecological oncologist, i.e. the one who would be dealing with my ovaries if/when that happens. So likely a long conversation about all the permutations of the many choices I could make in the next years. I'm already drained just thinking about it. Then a couple of hours later it's radiation time. Tuesday is OT and radiation, the rest of the week busy in general, then Ben leaves at the end of it. And all the while, the dishes and laundry and bathroom and floors aren't cleaning themselves, are they? Guh. Behind. So behind.

Olive is having a lot of fun quacking these days, especially loud quacking! That, and she shrugs sometimes, which is just the best...

April 7, 2011

Day off

Good day/Bad day?: Pretty good

I'm pretty sore, more in my neck than anywhere else, but all in all I had a good day off! Took myself out for breakfast, went grocery shopping, came home and started digging through the black hole that is my office, radiation, then Olive & Ben time. Olive was in a lovely, silly mood most of the night, and we played with a natural version of play dough for a while. (She was a little afraid at first, but then enjoyed the squishing, and these ones smell like fruits...) Really a low-key kind of day. Music shuffle on the Zune was treating me well, Frank made me a delicious juice, etc, etc. Nothing wrong with that. I'm trying to enjoy these days off before the fatigue kicks in.

For a little while, I was not as worried about the radiation side effects again, and then Ben reminded me that I had gotten most of the chemo side effects. Oh. Oh yeah.

Favorite Olivism? She's got a very strong "nummy" now (and uses it appropriately!). She was also pretty keen on learning "peach" tonight.

April 6, 2011


Good day/Bad day?: well, better than yesterday

But I think there's a little bad mood hangover there. I'm working it out. I have to say I wasn't quite as sore as I expected today. Still not super comfortable, but really not as bad as it could have been.

Radiation treatment #2 today. Very quick--about 10-15 min, then met with the radiation oncology MD. The treatment involved just a little more set-up again, but nothing at all like yesterday. The MD said it would be 33 treatments, give or take one (which would put me at May 19th for the last one). I'm supposed to smear myself with thick, petroleum-based cream 4x/day to keep my skin from reacting too much--it's really kind of gross.

That's all for tonight. My brain's shutting down. But I have a day off tomorrow! Goodnight.

April 5, 2011

Boring business items

As you saw from Jen's last post, radiation is going to be no picnic. So we are once again putting out the call for help over the next 6 weeks. It has really been great to have an extra person around during the times when Jen is feeling tired, painful, icky, crappy, etc etc.

Duties would mostly be Olive-oriented, to free my hands up so I can do all the other stuff that needs doing. Alternately, if Olive NEEDS to have her daddy, you may be tasked with house work or yard work. It's really up to you (well, Olive and you) what you want to do, and we are grateful for anything.

The dates we're looking for help are:

April 9-10
April 16-24 (Apr. 17-21 and 24 taken)
April 30-May 1
May 7-8 (May 7 taken)
May 14-15 (May 14 taken)
May 21-22 (May 21 taken)

If you want some Olive time, let one of us know! I'll update this post as spots are taken.

UPDATE: Check to the right for the latest schedule and openings!

One more item of business: if you have given us food and are missing your dishes, please let us know. We have tried to be good about getting dishes back to their owners, but have a few stragglers, and WAY more disposable tupperware than we probably need.

In closing, here's a picture of Olive that Jen says is too saucy but makes me crack up every time.


Good day/Bad day?: Bad

...or, "Why Jenny's feeling particularly sorry for herself today". Today was my first radiation treatment, so it was the long one and it was a doozy. This is the one where they have to map you out in detail to make sure they are aiming in the same place every time. That involves multiple rounds of x-ray shots, then the MD verifying that it all looks good, then the actual treatment.

What this really means is that I had to hold still for about 45 min. No big deal, right? Well, not in theory. I had to hold still lying down with my arms over my head. Again, no big deal, right? Well, I'm hoping it's no big deal for most of the people who ever have to go through it. Maybe they haven't had as much remodeling in that area. For me, worst pain in my life. Yes, that includes child birth, where I could feel every minute of the hour it took to push Olive out--at least then I could move when I needed to. Any other procedure and pain I've had with this cancer, I've been pain-medicated and sedated, too.

You see, I can get by pretty well these days despite my weaker arms and diminished range of motion, esp on my R side. Once they stopped the weight restrictions for me, I was back to holding Olive quite often and doing other normal activities. But today I had to reach over my head and hold on to 2 pegs, let my elbows fall to the side, and turn my head to the left. Excruciating for my R arm--my shoulder was in a funny rotation, the whole thing was getting heavy and falling asleep, and the only thing I could move was my fingers a little on the peg. I tried deep breathing, visualization, guided imagery--none of it worked for more than a minute. I got to have one break after about 30 min of this. By then I was whimpering and crying. It was like being on "the rack". I recovered a little and could finish up the rest of the time, which was the treatment itself. That will only take about 10 min each time, so I won't be going through this again. Phew.

Yes, the staff warned me that it would be long and uncomfortable, told me to take ibuprofen before I came. I did. Knowing what I know now, I should have had the heavier-duty meds and had someone drive me. No, I don't blame them, even though I've had offers of people wanting to punch them for me! They were as nice as they could be, but holding still is holding still, and if I would have moved it would have all taken longer. But this is one of those days where if anyone said out loud near me that their cancer was "a gift", I would have slapped them hard.

Then, I was looking for someone's shoulder to cry on. But Ben & I had a miscommunication, so he tried to meet me at the hospital downtown, while I was on the East side and finishing up. Then I stopped by the pharmacy to see Julie on the way to work, but she was starting late and wouldn't be there for a little while. So I bawled in the car on my way over to work. I stopped to grab lunch and composed myself, then I headed into the office for a meeting. Thought I was okay until my teammates asked me how I was, then I bawled again. I ugly-cried a few times today. But I got through the rest of the day and will rest and recover tonight. And maybe pout some more. Not my finest moment.

Okay, I could go on, but that's long enough for tonight. Thanks for indulging me.

April 3, 2011

Looking Back

Good day/Bad day?: Good

Weekend wrap-up: Friday was breakfast out for a berries & cream waffle at Lazy Jane's, then 1.5 hrs OT appt. I have mild to moderate R arm swelling, to be managed with compression sleeve and exercises for now, many more interventions if that doesn't work. Compression sleeves = not attractive at all (there's a glove, too)! Hopefully I can get the swelling back down in the next month, but it's weekly appts for that for a while. Well, the spa getaway that I needed for me was not at all what my arm wanted--I knew I was taking a chance. Then lunch & nap, then Julie hung out with Olive while Ben & I had a lovely evening out (Merchant was yummy!).

Saturday was a lot of Olive hanging out after breakfast with Julie. We had a very extended playground visit in the afternoon. She loved the slide and swings, felt the pebbles, and met a 6 wk old puppy. And Ben bought his new 'cycle, so his April trip is back on. He could not stop smiling, and he certainly deserves it!

Today was a lot more Olive time, too--went to the bakery, hung out, then went to Gene & Kate's for dinner--thanks a bunch!

So Friday was 5 years since Mom died. I don't have any particular ritual or anything, but I certainly thought about her throughout the day. I wrote a long-overdue letter to one of her good friends, too, that I've been meaning to write for years. It seems like no time at all has gone by, and yet when I recount what's happened in the last 5 yrs, it feels like an eternity. We seem to never slow down on our major life events around here! I'm not in a bad place on the anniversary, but in those years Ben & I have built a home and a family and a life that I'm proud of, and I just wish she could be around to see it. It's hard to imagine what it'd be like to have her here for other things, though, because do I imagine healthy Mom, sick Mom,...? Part of me is glad she doesn't have to watch me go through this and relive her own battles. But of course I miss her. This is exactly the kind of experience where you want your mommy.

And again, I have a new perspective on her cancer journey, and I wish I could go back in time and support her in a different way knowing what I know now. But she did it her way, was stubbornly independent about a lot of things although I was able to help out through some of it. I've been able to learn lessons from that--I certainly have my pride, but I've had to change what that means in this process. Now, instead of being too proud to ask for help, I'm proud of what I've been able to keep doing through this process while letting go of a lot. More than that, even, I'm proud of the team of incredible friends and family I've been lucky to assemble around me during this time.

(Pssst! That means you... Thank you.)

Looking forward? Tuesday is radiation day #1, and then a bajillion more appointments for many things to cram into the next month or 2. Now that's what I call fun...