May 31, 2011


Good day/Bad day?: okay

I was bone tired today, but there were some enjoyable moments to it... Still struggling to be productive at work, to plan ahead and follow through on things. I'm not gaining any more focus having to think ahead about all this Olive prep. BTW, they changed her surgery date today to June 30th. Ben & I will definitely not be having our vacation at Madeline Island the next week! I may wind up taking another week off work after that. I've also commissioned Ben to develop something to wheel Olive around the house--I am not going to be lifting close to 40 lbs of child regularly.

I've had some time lately to think about wants and needs. Having cancer, going through treatment does make you take stock after all. Again, it's all about perspective. I have everything I need. I do not want for the necessities of life on a regular basis. I am loved and love. I have many simple joys that are profound on their own. What Olive has going on is temporary and fixable--could be a lot worse.

What about health? I don't know if that falls into wants or needs. It's too much of a continuum--you can certainly have less good health than you need, more health is better--but how much is enough? Depends on the day you ask me. I certainly have room to grow right now. My body has bounced back a lot, but I am not feeling 35 yet--maybe 50-ish. Well, I guess I want that to improve, but I don't NEED it to. But I hope it will.

I wanted to celebrate another birthday with Mom, too, but 66 was not to be hers today...

May 28, 2011

Thinking ahead

Good day/Bad day?: pretty good

Okay, so catching up. Thursday was busy, busy work day, then Friday was day off. It was pretty nice--took Olive to day care, came home and went back to sleep for a little while, massage (thanks again Jeanette!), lunch, householdey stuff, then Olive pickup and hanging out until grandma arrived. Ben's out of town until tomorrow, little motorcycle gang outing for 2 nights camping. Thank you to Kathy for coming to help out!

Today Kathy let me sleep in (:)) and we went up to the farmer's market for a while. I got to walk around getting what I needed while she entertained Olive. She got a red balloon and it was a big hit! She went over to great-grandma's for dinner while Julie & I went to a movie & dinner. Very nice. Feeling better every day, still getting the fatigue but not as sudden and profound. Skin is MUCH better. The body is an amazing thing, and easy to take for granted.

Olive's surgery is booked for June 23rd. I don't know what to do with that right now--trying to think ahead but there are so many details we won't be able to figure out until we see exactly what position she'll be casted in. Can't buy a lot of clothes ahead of time, hard to think about toys/things that will entertain her, how to get her around...Now we try to figure out how much time to take off and stay home with her, all that fun stuff.

May 24, 2011


Good day/bad day?: eh

Long day. But the upside is that at my OT appt, my R arm swelling was a lot less than I thought it would be. She said I was doing all the right things for it, that it was very expected that my arm would swell during radiation with all the inflammation in the area. I just have to keep working to loosen up my scar when my skin heals, be vigilant about intervening when I start to swell, and work on my shoulder range of motion and muscle movement.

Then back to work for a little while, and then off to the hospital for Olive's appt. And we had to wait over an hour before she was seen. An hour with a restless toddler without a nap=eternity.

So here's the deal. The ortho surgeon said that there really was no intervention short of surgery that would be enough to correct her hip. (To not intervene? Limp, and severe arthritis early in life...) The question he mulled over was how much remodeling of the joint to do at once--sometimes they do as much as they can in one surgery, sometimes they plan to go back in and do more correction at a later date. There are pros and cons to both approaches, and after thinking through his recommendations a few times he would go with the more remodelling in one surgery (it involves a little bone grafting to make an upper part of the hip socket). No date set yet for the surgery, but we're trying to get it done soon so she can be out of the cast by fall. Open reduction surgery, 1-2 nights in the hospital. 3 months of the spica cast, the version with the full right leg and the partial L leg (above the knee) that would go up to her ribcage. No magical answers there--it will be a lot to figure out, from sleeping to skin care to diapering to car seats to outfits.

Olive got to play with a baby doll in a spica cast. She wasn't a big fan at first but then had fun taking the diaper off & on...

There you have it! No "We were wrong about everything, it's fine." Damn.

May 23, 2011

Happy Tired

Good day/Bad day?: okay

Loowww energy. It was a busy weekend! Nice weather, so we had a lot of outside time. Lots of good people around Saturday, with Julie taking Olive duty for a long time, the Dittmars, a quick stop by Ben's grandma, Jeff & Andrea for an overnight stay, and the guys over to enjoy the fire. And a meat-a-palooza, with Joel & Ben cooking up their homemade sausages (OMG, as the kids say)! Sunday was hanging out with Jeff & Andrea (who had a multiple-playground outing with Olive). Then more & more and more outside time, including my first time weeding in a long time. It felt good at the time, but... sore today, and my hand and arm swelled up pretty noticeably. Don't get ahead of yourself, Jenny!

It's just so tempting to try to jump back into life! But I've got to temper my own expectations. I say I will to other people, but then I don't listen to myself. I've even said to some people that I have in mind that this recovery will be like the pregnancy-weight advice: it takes 9 months to put it on, so expect to take just as long to take it off. That would mean I have almost a year of recovery time ahead of me. Patience...

Tomorrow is a little fragmented--some work when I can get it in, OT in the morning (it's been a while, and now I've backslid with the edema and range of motion during radiation), then Olive's big ortho appt in the afternoon. We'll see what comes of that. Hopefully a game plan. Oh, good news! Our day care would take her in the cast and keep her at the same rate! I did not expect that...

May 20, 2011


Good day/Bad day?: pretty good

Restless night for Olive = restless night for us! She still has an ear infection, and possibly hand-foot-mouth...but it'll all clear up shortly. And tonight she is as pooped as she can get.

I had the day off, so after the morning with her and a doctor trip and groceries, I got a nap in. Then it was off to the park to meet the work team for a picnic. Thanks, guys! It was nice to get all our families together, and I certainly appreciate a toast in my honor. I wasn't as eloquent in my words for you as I would have liked... A nice starter celebration! And Olive was outside A LOT today, so cross your fingers for a sleepy night after a good bath.

I am amazed at how much better my skin is getting already--the last 5 treatments were just on my scar, so the rest of my chest is coming around. Still ugly, but not uhhhhhg-ahh-leeee.

Tomorrow Julie is around while Ben & Joel make homemade sausage, and then Jeff & Andrea come to eat it (& help out)! That will be nice. Time to get to bed.

May 19, 2011


Good day/Bad day?: we'll call it okay

Today was not a miraculous day, but...

I had my last radiation treatment, got hugs from the nurse and techs and a firm handshake from my radiation oncologist, and I walked out and the sun was shining. And our yard smells like lilacs.

To be continued...

May 18, 2011

Getting There

Good day/Bad day?: not so hot

I should have known when my commute started out with 2 trains and an accident...

Anyway, let me back up. I forgot to thank some meal people from last week--Mia, Sue, and Kate--thanks for the yumminess! I've skipped a few days, mostly because of being tired and not getting to wind down early enough. Monday was okay, had a second ultrasound of my ovaries. They called me back after last month, assured me right away they weren't worried it was cancer or anything but wanted to see if there was a cyst that stayed or something. Didn't realize it was bothering me at all until I had it done and all was normal again--not that it would have been a big health issue, but I'd like a part of my body to not remodel anytime soon! It's also very weird, after having a lot of ultrasounds when pregnant , to not have the heartbeat, pictures, etc. to look forward to.

Tuesday was very full but okay, and then Olive came home like a wet noodle, exhausted, had a fever. But she slept pretty well considering, and no temp this AM. Then it came back tonight. But we'll work it out.

So I've had some discussions with people about tomorrow being the last radiation treatment and whether it feels like a milestone. I'm sad to report that, even though some things will be "over"--mostly daily or weekly appts, though I'll still have quite a few for a while--it's still not "the end". It would be so nice, wouldn't it, to just have a day to wake up and say "Time to get back to normal!" Well, I can say it, but it will have limited power...

A few nuts & bolts of the short-term recovery: the radiation MD today said the pain/discomfort at the radiation site usually goes away in 7-10 days, the skin will be mostly healed but not lighter in 3-4 weeks and the fatigue usually coincides with that, and the site will be darker noticeably for a few years, very possibly to some degree for the rest of my life. With all of the inflammation in the region right now, my R arm swelling is increased and will be for a while, more prone to it for the next year or 2.

A lovely friend said to me that she's looking forward to the day (knowing it will be a ways off) that I wake up and just feel good. As she said it, I kind of teared up because there is a part of me that can't get too attached to that right now. I've been in survival mode for almost a year, was already tired from pregnancy and nursing before that--it's just been a long time! It's hard to balance being optimistic and guarded at the same time.

When I had a massage a couple of weeks ago, she remarked on how supremely tense my shoulders were and how that equates to carrying a lot of responsibility (i.e. where you carry your tension equates to how you handle stress in your life). I've "shouldered" a lot with this, and as she said that I literally saw myself crouched on the ground and hunkered down. That's how I've been. Afraid to stick my head up for fear of what I'll have to take on next, afraid of what it'll feel like to stand up straight and be vulnerable to anything. And feeling responsible--from day one, even though it's not rational and it's not necessarily about blame. To whatever degree I think I brought this on, bad choices I may have inadvertently made, blah , blah, it's not about that. It's about feeling responsible for putting everyone else through this, too. Yes, there have been some lovely things that have evolved out of receiving support from others, and I know people get genuine gratification from helping. There's the other side of that, though--I do not like feeling like the catalyst of anyone else's turmoil.

Okay, enough of that but I had a little purging to do. Probably necessary so tomorrow DOES feel like a positive day. And what else is good? Well, it's a little weird but gave me a good laugh--Olive got a hold of her thermometer and went around trying to take rectal temps of her stuffed animals, then tried to approach me with it... Goodnight!

May 15, 2011

Weekend help

Good day/Bad day?: Good, though I started out crappy

Yay, wonderful weekend helpers! Sue came to hang out with Olive yesterday, Jon came to mow this AM, and Myra & Maureen entertained Olive for the afternoon and took her to see great-grandma! Thank you all--Ben & I got some good stuff done, I got to rest. The only time it's been easy to ask people to help around the house was when I was post-surgical and could hardly move my arms, so thanks for doing the chores I asked for...

That kinda makes up for the fact that I want to rip my chest off. Itchy, hot, peely, sore. Thursday can't come fast enough. And then what? Well, we'll take it one step at a time. I'd like to get excited and celebrate and all that, but I also need to heal up. I think a number of small celebrations will be what's in order.

Olive's going to sleep like a log tonight, knock wood. Busy weekend for her. What's exciting for her? She does a pretty good elephant noise sometimes, and she tried Italian parsley from the garden and loved it. And rocks are pretty cool.

May 11, 2011

T- minus...

Good day/Bad day?: pthhhhht

Needed 2 naps and still worn out.

Official end date of radiation = May 19th.

May 10, 2011


Good day/Bad day?: mostly good

Kinda worn out today from the get-go, but made it through a 3-hr class first thing in the morning. Then it was all downhill--hooray for naps! But this evening, Dianna came to hang out with Olive while Ben & I went out. Good Laotian dinner, piece of cheesecake from the Blue Plate, walked by the lake a little, and Tom Waits sang us home. Can't complain about that.

And now for the complaining! My skin is going straight to horrible with the radiation. It's starting to peel and open up under my armpits, the skin is swollen and almost black under there, can't comfortably put my arm down... This sucks. Going to have to grit my teeth to get through the rest of this.

May 8, 2011

Mother's Day

Good day/Bad day?: Pretty good

Happy Mother's Day! (FYI, it is not a Hallmark holiday, has some more meaningful origins than that...) Had a good breakfast out, then headed to the zoo, then a nap, and an evening hanging out and playing. Wish I felt better, but it was still good. Olive liked the flamingos, prairie dogs, bison, polar & grizzly bears, was a lovely day for it, and yay for free zoos! Thanks, Ben, for giving me some breaks, and thanks Bruce & Kathy for the nice gifts!

I want to take this day to thank the mothers in my life for mothering me through this. Without my own mom, you have stepped in to nuture me, watch out for my well-being, bake for me... This is for you, the incredible moms, aunts, sisters, grandmas, friends, in-laws, that have all adopted me and let me know that it's okay to rely on the love that's out there and that it comes with no strings attached. That's what all you moms do so well. Not to discount the fellas--I've got an awesome group of those looking out for me, too. But this process has brought all that it means to be female front and center, and as I've lost pieces of that physically, I'm more aware of the other parts of that.

And Olive has certainly added a whole new dimension to me and my life, too. Turns out I'll put my body through a whole heck of a lot to be able to hang out with her & Ben a lot longer. She brings out parts of me I never knew I had. Being a mother is darn cool (if exhausting!). She gives us a lot to be proud of.

And so I head into the home stretch. About 2 more weeks of radiation, then a little lag time as I recover from that--it's way more cumulative than chemo. Getting there.

Olive's word of the week is "octopus". She at least gets all the syllables right, even if she throws in an "e" ("eat-o-puh"). Didn't get to see one today, though.

May 7, 2011


Good day/Bad day?: Good

Welcome to the world, Ivy! And happy birthday to her mama, too!

Had a busy last couple of days--Thurs was supposed to be a day off but worked half, then massage (thanks Jeanette!), and Friday was a full day, too. I very much need a nap to recover in the late afternoon/early eve. And my chest is about the color of raw beef right now, in a nice swath from my armpit to the bottom of my ribcage (and feels about as good as you'd expect, i.e. not). But whatever. I was feeling very pensive Thurs, but since I didn't write it down then, some of my grand thoughts are lost.

Big yay to Sue, who came to help out today and gave me the opportunity for a 3-hr nap and a trip to Target. I got to save some energy for tonight, hanging out with my sis. We had deliciousness at the Underground Kitchen, and then saw Jonathan Richman perform--totally joyful, silly show. He should be my own personal troubadour. Good stuff.

Happy almost-Mother's Day! More thoughts on that tomorrow. Good night.

May 4, 2011


Good day/Bad day?: eh

That's the word they use to describe my skin reaction. I had another radiation onc MD today (my usual MD's at a conference), and he had an interesting way of putting things. He said they're happy to see the brisk skin reaction--if my body is susceptible to the radiation and reacting like this, they hope that any remaining cancer cells are just as reactive.

Okay during the day, but after radiation I'm spent most days now. It's fairly quick when it comes on (during dinner tonight), and it's upsetting. I don't like having to check out like that. Get used to it, Jenny. A couple more weeks of treatments, and then we'll see how long it takes to recover.

May 3, 2011

Extra crispy

Good day/Bad day?: okay

Very disjointed last few days, so I'm having a hard time knowing that it's Tuesday. Not that it matters. I was at a conference, and it actually started with a half day Sunday so my week's thrown off. Nothing exotic, just in the Dells for an Alzheimer's conference. I kinda love conferences--free pens and stuff, brochures you'll never read, looking forward to mediocre snack breaks--it sounds sarcastic, but I actually do like it! There was some good info, too. Today was partially starting to get a little sort of back into work for a short while. Tomorrow will be better.

I've had a couple more of those profound fatigue spells. Not every day, maybe every other. Last week was the halfway point for radiation! Getting there. It will be done none too soon--I don't know how much more my skin can take.

Sorry, it's a bad cell phone pic with shiny skin (very close up--Ben's hesitant to have me post my scars for public access). But as you can see, there's a clear difference from the pale R side and the L swath that's angry red. Clothing is starting to get very uncomfortable, and I'm going to try a gel dressing over it tonight to sleep, crossing my fingers that it will work.

This is why I justified buying 2 new pairs of shoes in the last week.

For those waiting to know more about the Olive details, her appt with the ortho surgeon isn't until the 24th. So we wait...