November 22, 2011

50/50

Oh, you know, we've been busy in the last weeks.  Usual stuff and everyone's well.  I could brag about Olive stuff, but you'll just have to come see her for yourself.  I had a few very busy weeks at work and am very happy that it's a shorter holiday week--one might say that I'm "thankful"!  We'll have a nice day up in Wausau to see my immediate fam, and then to Milwaukee for a couple of days while Ben finishes crafting something...

I went to see the movie 50/50 a few days ago.  For those of you not familiar, it's a movie about a young guy (late-20s?) that is diagnosed with a rare cancer and is given a 50/50 survival rate.  You see him through the diagnosis, chemo, surgery.  It's a dramedy.  It was alright--not a heavy hitter as far as movies go, but to watch the cancer journey from the outside was tough even if they glossed over a lot.  I was crying pretty decently at different times.  The hardest parts?  Well, you get to see the perspective of the people supporting him through it--his best friend, his parents--and to feel the powerlessness, how much they want to do SOMETHING to make it better but struggle, and how it feels to them when he's not telling them what's going on.  It was also hard to watch him panic before going into surgery and just think back about how numb I must have been at the time of mine. 

So what were my takeaways?  Well, mostly about the feelings of those around you when you're not telling them how you're really feeling.  There was a part of this journey when I just couldn't hide how hard it was for anyone--it was written all over my pained, green face.  But now, when I'm better and am trying hard to get back to normal, I forget that nobody can tell what it's like to be me at the end of the day, that it sucks that enjoying a normal day with Olive & Ben takes a lot out of me and makes me hurt at the end of the day...  So I'm talking about it, including making it clear to Ben that I'm tagging out for a break because I physically need one.  I don't want to belabor what it's like, but my upper body is fragile by the end of the day.

The other piece that I'm still thinking about: at the end of the movie, his surgery was kind of set up as a success, meaning that he was done with it all.  He had a clean slate and came out on the good end of the 50%.  I don't feel like the end of treatment was a clean slate for me.  There is too much carry-over into how I feel every day to make it feel like a fresh start--it's still recovery.  I guess I could just take the mindset that it's a new chance to make the most of my life, and I feel like I am in a lot of ways.  But dang, it would be nice to feel reinvigorated.  I am not going to be taking on heroic, inspiring, survivor-y things for a while because by the end of the day, I have given all I can.  I would love to get to a point where I get beyond that and where I can start reaching out and doing for others.  I hope that the coming seasons will bring that around for me.

November 5, 2011

Halloween

And because it wouldn't be fair to hog the spotlight from the real star around here, here are some Olive Halloween shots...

Rawr.


Fashion Show

Okay, here's evidence.  It was actually a lot of fun!  (The hair and makeup stuff was slightly absurd, and some people are VERY serious about it all, but our group enjoyed it...)  Great turnout, got a lot of good exposure for my friend Natalie's awesome store, and I didn't fall down.  I was feeling pretty cool until you have to stand there and smile for a couple of minutes--then it starts to feel awkward.

Yep, we got local news time...

http://www.nbc15.com/video/?autoStart=true&topVideoCatNo=default&clipId=6390079

And here are some pics:










I have to say, though, that the last year has gone a long way in erasing a lot of self-consciousness.  After walking around for months bald, pale/green, and boobless, this is a victory of some sort.  I'm hoping this is the freedom from caring what other people think that's supposed to come in your 50s and I'm just ahead of schedule...

So there you have it--my runway debut and swan song!

October 25, 2011

Strutting our Stuff

video

So for those who have asked how Olive's progressing, this is last week and she's faster this week, also running back and forth through the house regularly.  I think I made the mistake of telling her she'd have more energy after a nap and now she's proving me right!  No more limp.  (She keeps stopping in the video because she likes you to say "Ready, set, go!" a lot.)

So I'm learning to walk, too.  On a runway.  In a fashion show.  Tomorrow.  One of my friends is a designer that asked me to do it, and it's for domestic abuse intervention, so here I go...  On the plus side, I had rehearsal yesterday and was told I have a good walk.  I also take it as a plus, too, that I am no longer so self-conscious that I would say no.  I've got nothing to lose!

Had other stuff in the last week or so, mostly really good.  Busy work weeks, but the weekends have been fine, had another therapy session, went to a conference with Julie about cancer and integrative medicine that inspired me to start taking steps again to clean up my act, especially when it comes to diet.  I haven't fully started yet, for those of you who saw me with dessert today--shush.

I don't know if there will be video or photo evidence of my escapade tomorrow--well, I know there will be somewhere, but I may not try to track it down.  But I may post some for you...  Time to get my beauty sleep.

October 17, 2011

Here and gone

Hope you all had a good weekend--we did overall, just pretty ordinary and that's just fine!  Got to sneak in some family visits with Gene & Kate, Mary & Rick, Adeline, Jeri Christine & Christopher...  Olive was still feverish from the croup through Friday and a little Saturday, but she finally started sleeping better and so did we.  Back to day care today, close to good as new but worn out and tantrummy at home.  Thanks, dear.

I will be keeping it short and sweet because I have a busy week coming up--actually 2 weeks.  Sneaking in another therapy session this week, then a local cancer conference Friday.  Overall, life is feeling pretty normal right now.  I'd better knock wood.

I do have some running video of Olive--I'm too lazy to post more tonight, so I'll save it.  'Nite.

October 11, 2011

Healing

So Olive's got croup.  But it's not scary bad, like we're not worried about her being able to breathe.  Ben & she had an interrupted night, as I did the night before.  And father and daughter hung out today instead of day care.  We'll cross our fingers for sleep tonight...  Oh, and I will post some fast-walking/running video very soon.

Yesterday was ovarian cancer screening for me (every 6 months), and all is well on that front.  And today was my first therapy session.  Got an excellent referral and feel like it's the right thing for me to do at the right time.  Today was spent reviewing "the story of what brought me to therapy".  I had plenty of material for an hour!  Mostly the last year, but then reviewing the cycles of change and loss we've been through for a good five-ish years.  It's a lot.  It's weird to want confirmation/validation of that, but it helps.  So now we dive into it, and I will dare to explore self-image, beliefs, marriage, family, parenthood, career, friendships--the whole shebang.  It's all these "now what?" pieces that will probably keep me going back for a long time.  And today was a reminder that if you see me about to institute a major life change in the near future, make me take a time out...

October 7, 2011

Cleaning House

Well, progress was made.  A lot.  It was a good day!

As a testament to why I had put off sorting through a lot of my crazy piles of stuff, there were some strange moments.  Strangest was finding the very piece of paper where I wrote down my biopsy results when I got the cancer diagnosis.  It took monumental focus at work that day to write the words "invasive ductal carcinoma" all the way through without freaking out.  My body remembers that feeling well...

Olive was very funny today and mostly very agreeable until she got tired.  Her "run" is turning into an actual run!  What else... She wanted to try my mineral water and has only had carbonation one other time, so I told her the little bubbles can feel kind of funny in your mouth, so she was calling it "silly goose water" :).  And she thoroughly enjoyed a WI fish fry (as did we), especially the cole slaw.

Good night!

October 6, 2011

Action-packed

Okay, a recap of the last week-ish...

Olive:  Miss T. R. Ubble got back to walking without holding on a week after the cast was off, and is now trying to "run" (fast walking) and doing stairs.  She still has a limp at times, wears a brace similar to her cast at night and is being a very good sport about that.  With walking comes the re-discovery that she can make everything take 5 times longer than normal if she keeps moving.  Also, she feels like hitting, which brings us to her her first time-outs.  The other day I just felt like asking her why she hit me, and she answered "I'm sassy."  Yes.  Yes you are.  But even tonight was better--I think she just needed to retest her boundaries.


Whatever spell you need to cast, my darling-- suddenly I want to give you cookies for every meal, let you drive the car, move back bedtime a few hours...


Me: Oh, it's been action-packed, alright!  Had a nice long weekend enjoying the fall colors with Monica (thankyouthankyou).  We had all these grand plans of staying up late and acting like 20-yr-olds, and then we wound up going to bed early every night.  But it was very relaxing (aside from the 15-mile hike, but that wound up being good, too...).  Thanks to Kathy & Bruce for letting me get away and giving Ben a break, too!  Then medical oncology appt yesterday afternoon, which was fine--I made her walk through a hypothetical recurrence since that's where my mind jumps sometimes...  Then last night Julie took me to see Wilco--great show, nice dinner with friends before.  And then next week I have my next round of ovarian cancer screening (every 6 months), and then some OT to get back on top of my arm swelling, and then a cancer conference...  And then I am taking tomorrow off.

Which brings me to my "cleaning house" time.  For one, I am going to try therapy.  I am equipped to know myself pretty well, but not enough to be able to break out of my own thought patterns and give myself a whole new perspective.  This has been a lot to process, if I may take a moment to make you say "duh".  And then we come to my office.  I think I've 'fessed up here before about its state of disarray, and the fact that it been like that for years.  I'm coming to the realization that if I hadn't allowed myself to have that space of chaos the last 5-ish years, there is likely no way I could have kept the rest of my life orderly enough to keep functioning .  There have been a few losses of very important people to me and enough other major life events to keep me scrambling, and then throw in the cancer and you have a literal mess.  And a mess I haven't had the strength to deal with, because that also means getting rid of/letting go of some things, ascribing meaning to a lot of things... That takes a lot of psychic energy. 

We'll see how far I get tomorrow.

September 26, 2011

Sea Legs

video

This is yesterday, and Olive was still holding on pretty tightly, though she was a master of pushing her stroller all around the neighborhood.

Today, she let go!  Taking steps with "no hands" with a lot of encouragement.  And then she did a lot of dancing with Sesame Street.  I like this progress...

(But now she's getting a cold.  Here it comes for the rest of us.)

September 22, 2011

Big Girl

So I forgot to tell you how TALL Olive is without the cast now.  It's weird how big she suddenly got! 

She is trucking along, still slowly getting her legs back, crawling, cruising along furniture, and using push toys to walk, still not doing it without hanging on.  She gets really worn out by the end of the day--not just meltdown city, but her legs get tired and wobbly.  They have her wearing a brace for bedtime that puts her in a similar position as the cast, will have that at least until her follow-up in 6 weeks.  She didn't last long the first night but slept through the night last night.

But she is a huge fan of baths now.  AND, she pooped on her potty today!  Yay!!!!!  We've been talking it up while she was in the cast as one of the big girl things she can do with the cast off, and she actually sat on it a few times with the cast on... 

The rest of us?  Well, it's been another series of adjustments, new morning and bedtime routines, etc.  At least I don't have to wake up for a diaper change at 3am anymore.  We're still getting our bearings.  I'm still off schedule and beat from the weekend travel and lack of sleep, and my arm swelling got a little worse with the air travel (it does that...).  Oh, if I didn't make it clear, my shingles cleared up very quickly--if I hadn't gone in to the MD that day, there might not have been enough to see the next day.  That's a very good thing (that it was small and short-lived).

I've had a lot of thoughts swimming in my head lately about being a longer term survivor, the life-long impact of the cancer and treatment, and also where I'm at in life in general.  A lot of thoughts, but too tired to get them out and coherent yet.  As I start to think about this year+, this blog, I think it may be time to wrap it up soon.  Or go monthly or something.  But I do want to pull some of these thoughts together to bookend this chapter first...

September 20, 2011

Independence Day

That face kinda says it all...

Olive was a super-trooper today, didn't freak out much with the cast saw.  (It helped that they gave her a new Pillow Pet, too!)  She had a little while of just looking a little unsure, looking at her legs and not knowing what to do with them.  She wants to move, but she's not going to overdo it.  Did a little supported walking and cruising along furniture and went up the steps of the slide, but is otherwise crawling most of the time.  She's a little noodley overall, forgot how to support herself sitting in a chair, etc.  It's very weird to pick her up--she feels like she's going to slide right out of my arms without all that heft (and the built-in handle)! 

I have never seen a kid SO excited about a bath.  We had a lot of time playing with bubbles and splashing tonight.  It's good, because we need to get some of the gross off of her.  It'll take a little while to get back to happy skin!

Okay, we're tired now...  Good night!

September 18, 2011

There and back again...

To Pittsburgh and back, safe and sound.  (My bag made it back only shortly thereafter...)

I had a good weekend.  Not as much time to explore as fully as I hoped, but a lot of enjoyable things.  Treated myself to a nice dinner Thurs night when I got there, explored a little Friday morning, then conference Fri afternoon and Sat all day.  Lots of walking all around.  Then another nice dinner Sat night before a nice early morning to get back this morning (4:30 wake up, oh and that's 3:30 our time!)

The conference itself wound up being an interesting mix of topics that applied to me personally and professionally.  The focus was palliative & hospice care in cancer patients, so a lot was directly related to what I work with regularly.  Then there were the pieces that were about cancer survivorship and how little is known about the long-term and late effects of cancer treatment and how much it impacts the lives of survivors.  It gives me a lot to think about, along with reading more about "chemo brain" as a real phenomenon that can profoundly affect chemo patients.  I don't have significant impact from it, but I certainly am not as cognitively sharp as I'd like to think I was.  So anyway.

It was interesting to travel and contrast it to my getaway to Milwaukee last winter.  Being bald really has an impact--strangers just approach you and welcome you in.  This trip, there were a few people at the conference that could recognize what my appearance meant (compression sleeve, L arm scar from port, flat chest, short hair) and did approach me, but minimally.  Just interesting.

Ben and Olive held down the fort while I was gone and Ben was even in pretty good spirits (but ready for a break)!  And Olive is now in the bedtime-without-pacifier routine like a champion.  Now to get ready for the un-casting... (Tuesday...)  Oh boy.

September 14, 2011

Drama Queen

I'm worried I'm going to be accused of being a drama queen.  In fact, it may have already happened a few times by those that shall remain unnamed ;)... So what is it now, Jenny?  Well, in addition to the side effects I described for Saturday, my shingles medication has provoked an allergic reaction.  I have a delightfully itchy rash all around my right thumb and wrist, and then my left hand started in.  Just in time for travel!

I'm taking a little time-out to go to a conference in Pittsburgh.  I leave tomorrow and come back Sunday morning.  Excited!  Luck to Ben in continuing to work on the bedtime routine with Miss Chief.

Speaking of, last night was progress!  Only 17 minutes of crying until she was out (not that we're counting...), and no wake-ups.  Pretty good in my book.  AND, only 6 more days until the cast is off!  Beware what you wish for, though.  If Ben would get on it, he has an awesome video of her pulling herself up to stand and walking along the bed in her cast (and chatting, lots of chatting)...

September 11, 2011

The Long Goodnight

I'm pretty pooped after this weekend.  Yesterday was a bust: felt dizzy and weird most of the day, side effects from the shingles med--was a lot like chemo days.  Today was just busy, busy, esp trying to entertain our little angel. 

So it's 10:30 and she's still awake.  We decided 2 nights ago to get rid of all her pacifiers, go cold turkey.  Some mysterious stranger came into the house and cut the ends off all of them so they didn't work, and then Olive threw them in the garbage.  First night, not so bad.  Last night, a little worse, finally settled in at about 10pm.  And tonight she's going strong!  Had her almost there a couple of times, but she also had a rough/pokey spot on her cast that she wasn't talking about, just continuing to change position and move all her pillows around.  Fixed that with lots of tape, but that's not helping the wound-up one.  There's no way this is going to end well...

September 7, 2011

Bump in the road

Good news/Bad news?  Good news is I don't have a local recurrence of cancer.  Bad news is I have shingles!

So yes, I'm informing you after I started to suspect something was not cool, but only by a day.  There was this weird, itchiness on my chest (R side where the radiation had been) that started yesterday and turned into a blister.  Wasn't acting like a bug bite or anything, though it was pretty small (~1cm).  Anytime there's something weird with my skin in that area, my mind jumps to conclusions--it's only happened one other time that I had a tiny lump near my scar, but it must have been more scar tissue changes and went away.  So that's a fun thing to be paranoid about for the rest of my life.  I'm in the I-know-just-enough-to-make-me-crazy stage with my nursing background, but I hadn't gone to the shingles page yet.

For those of you who don't know, shingles are the exact same virus as chicken pox, so people that have had it can have the same virus pop up as shingles years later.  It can come out of nowhere, but tend to show up more when someone's immunity is lower (i.e. after chemo).  I caught mine early, literally a day after it started, so i start antiviral meds today and it should clear up within a week.  If you don't start the med early you can have lifelong nerve pain at the site, so fast action is good.  (By the by, kudos to my radiation oncologist & nurse for hearing my description and sneaking me in this afternoon!)  It can always come back, but whatever.  One possible not fun thing to worry about for the week--Ben never had chicken pox as a kid and could catch it now, and it's always more nasty as an adult...

Don't mind me, I'll just crawl back in my bubble.

September 4, 2011

Happiness

Ahhhh, lazy Sunday!  After lazy Saturday!

Olive is hangin' out in Milwaukee for the weekend--we'll pick her up tomorrow.  Sure is quiet around here.  I'm wondering what phrases she's going to come home with, because lately it's all sentences--"Sometimes we have tea." "No, Mama, go out of the room." etc. etc.  Oh, and before she left, while she was crawling around on the kitchen floor, she crawled over to me and pulled herself to standing using my legs.  She seems to be a little motivated.

So far for free weekend, had Friday night alone and took myself to a movie.  Yesterday was sleeping in, a couple of farmer's markets, and shopping where I splurged on a few things (slow process of revamping my wardrobe to accommodate not having boobs).  Ben returned from a motorcycle journey to IA, tired and wet and stinky.  After naps, we went to the Tornado for their awesome late-night menu, sat and had cocktails and deliciousness and got to feel sophisticated for a few hours.  I had some grand ideas of being outside and walking a bunch, but then it rained all day.  Today I'm hoping for more get-up-and-go.  BUT, I also didn't stack the cards against me in thinking I had to get certain things done, so I'm not "behind" on my relaxing weekend...   Sometimes I can still get smarter :).

August 30, 2011

Busy Girl

video


Here's our girl, learning it's fun to slide along on her cast on tile flooring (and hardwood).  Crawling forward and backwards, sitting up on her knees, getting close to pulling up to stand.  That's the physical part, then there's the verbal.  Today she wanted to get my attention while I was reading something, so she said "No, Mama.  Please look at Olive."

She's had a very busy weekend hanging out with her great Aunt Judy!  She's visiting from OR, left today after a long weekend.  She was born to care for kids--Olive had a great time with her (and I got a few naps in!).  She's my mom's sister, so it feels close to having my mom playing with Olive.  I'd like to think she'd have been involved and love hanging out with her... but there are a lot of other people who have given their time to be with Olive and I am grateful.

So yeah, it was a good weekend.  Got to show off my daughter, my town, got to go out for dinner with Ben, catch up with family, let my back heal.  Now I have to figure out what I'm going to do with a weekend by myself!



August 25, 2011

Out of commission

Still on the mend.  I managed to crawl up the stairs that evening and have been mostly in bed ever since.  Slowly getting better, but it's tricky to determine when it's going to be okay to lift Olive again...  The past couple of days were not as smooth as I thought, because apparently my body was no longer accustomed to oxycodone and gave me a nice full day of nausea and vomiting to prove it.  Better today, though, and able to keep things down.  Ben has been toughing it out after some long days at work--thanks to Julie for helping yesterday, and looking forward to Aunt Judy coming tomorrow (let's hope she's up for some Olive-lifting!).

Because most of the last couple of days have been pretty drowsy, not a whole lot of profound thinking here.  I swear one of these days I'll be on the verge again...

August 24, 2011

Ahhhhh!

Crap. I am currently stuck in the basement having thrown out my back. Just happened suddenly as I was taking clothes out of the dryer, couldn't move without huge nerve pain. Ben is kind enough to fetch me things--this laptop, for instance--and is telling my body that he's sick of its drama. Me too!
Up until then it was a fairly decent day. Got to hang out with Mia for a while after work. I think Olive was showing off for her! She got up on her hands and knees and started crawling forwards and backwards and kept at it for quite a while. She was pretty proud of herself (me too!).
Now what? I'm going to have to pee soon, too...

August 22, 2011

Cliffhanger

Sorry--I forgot I left you hanging about Olive and the cast until a few people asked me. She's fine. Her "owies" stopped the next day and haven't really come back, so I never took her in. She's wiggling just fine. In fact, she's decided to start wiggling to the foot of the bed and is a little too close to the edge for my comfort. Time to add another pillow!

Otherwise...Had a nice but too short visit from the Davises. We'll get our lives to cooperate for our leisure one of these days! But certainly not today, either. Hectic. Looking forward to things slowing down next week, but at least I get to sneak in a few other friend visits this week (thanks to the Dittmars for dinner tonight!).

Last week I went to Borders going-out-of-business sale and wound up buying a few cancer-related books. I get sucked into it sometimes. I go through spells where I've had enough of it, and then phases where I want to learn more again, hear other people's stories. I can't help but compare myself to those others, though, and not always in the most magnanimous ways (i.e. she just had a lumpectomy and no genetic component--big deal!) Grow up, Jenny. Cancer is cancer, and it's never good.

August 17, 2011

Birthday Boy

Happy Birthday, Darlin'! (And Bruce, too. And Schmed--where's Schmed?)

If it's any consolation, this last year has really stacked enough wisdom for a while, so maybe you can take the next couple years off and not grow as a person, just kind of screw-off and watch a lot of tv.

Thanks, sis, for babysitting so I could surprise my hubby with a trip to the drive-in after a yummy supper. We've been talking about going for years, just have gotten maybe a little sidetracked from time to time...

I'm getting over my mood. The fall out of all this past year is just going to come in waves sometimes. Mia, you were right--it makes my want my mommy!

We've got a little possible kink in Olive-land. I think her cast might be too tight in her one hip--she's getting more and more tender with diaper changes, so we may have to take her back in for an adjustment... That's great, I was so bored.

Okay, bedtime! Goodnight.

August 15, 2011

Moods



Good weekend and all that (thanks again, Mo, for watching Olive while we went to APT, which was lovely!).


I'm just kind of in a mood today. Well, I think it's a couple of things. First, the subject of more children came up again and again the right decision seems to be no, but it's a sad conclusion for me to draw and brings up a lot of other feelings that I was trying to be done with. Feeling guilty that I didn't pursue the genetic piece before bringing Olive into the world. Feeling that every day I could apologize to Ben for all of this, and especially for limiting his future choices, and it still would never be enough. But we do the the best we can with where we're at now, right?



I had my year post-surgery appt with my surgical oncologist today. I was this close to crying. That shouldn't be weird, I suppose, only it is for me. Ben & Julie can correct me if I'm wrong, but through all this past year I can't remember actually getting upset enough to cry in an appointment. Maybe I was crying in the ER the one time where I had a pounding headache, a fever, and was nauseous, but otherwise I think I tried to stay pretty analytical through most times.


What was different today? Well, my surgeon is young and was pregnant with her first child when she operated on me last July. So I'm telling her about the last year since the surgery was over and I went through the rest of treatment, and I could see her thinking through all the logistics as if she would be going through it with a baby. Super empathetic, even just about Olive and the cast and dealing with an immobile toddler. Talking through all my issues with my R side, with the shoulder pain and mobility and the arm swelling, talking about how I know all the things I should be doing a few times a day to improve things but I just don't work it into my day and put myself lower on the to-do list. She kind of stopped me as I was talking it through and told me to stop feeling bad about it, because I'm choosing to do the things in my daily life that I went through all this for in the first place.


I don't know why that makes me sad and why I'm crying right now and have felt like it all day--just processing, I guess. I think I am going to struggle for a long time of feeling like not quite enough of anything: not quite taking care of myself well enough, not quite as energetic a wife and mother as I'd like to be, not nearly as complete in my career as I know I could be, not as consistent of a friend though I want it given back to me, all of those things and more. And I don't need anyone to pat me on the back and say "That's okay (cancer girl, i.e. we'll keep giving you a pass)". I know that the world will still give me leeway and I certainly will take it. But it's hard to feel that way when you really know how you'd like to be--I'm not still wandering like in my 20's...


Alright, enough of that to sit on tonight--I got it out of my system. As a reward for making it through that beeswax, here's Olive:







August 11, 2011

All's well

I was going to use a cheesy pun, like "Cast of characters" or something, but I'm not feeling too clever. We're just tired here.

We made it by 6:15 (up at 4:45)--thought Olive might nod off on the ride, but she decided to be wide awake. And then we had to wait over an hour. Things went smoothly, all's looking good from the MD's perspective, and we got a big thumbs-up on our skin- and cast-care! The new cast is shorter in the legs but doesn't seem any shorter in the torso, seems more scratchy, and is red (Olive's choice). Then crankier coming out of anesthesia than last time, but she didn't get put as far under and didn't have ongoing pain meds. Then a long rest of the stay killing time to wait for a CT scan and wait for the okay to leave. We were all exhausted and hungry, ate lunch quick and took a long nap.

The rest of her evening was good--no pain associated with the new cast, getting used to moving her R leg. Much, much more kicking.

August 10, 2011

Birthday Girl

Happy Second Birthday, beautiful daughter!

(I think I'm far enough removed from the labor and delivery that I've forgotten the less beautiful details...)

Miss Olive, who is a "big girl", was a little bit cranky today! Overstimulated maybe--we'll get back to some more presents in the next few days in small doses, and she didn't even want a second cupcake. A big thank you to all who have sent cards and presents.

I can't even begin to bring you up to date on her development--she's had word explosions every few days. Tonight she said "suppertime" very clearly out of nowhere, talks in 3-4 word phrases, makes a whole lot of connections on her own. She's going to be major trouble to keep up with...

Short one tonight because we have to be at the hospital by 6:15 tomorrow morning. Fun! Maybe we'll post some pictures of our 2-year-old then and we'll give an update after the cast change. Should be no big deal, just a day sitting around and waiting... Goodnight!


August 7, 2011

Car rides

Fairly normal week, which is to say busy but good. Let's see, updates? Olive had a pre-cast-change appt and things are a go for this coming Thursday. The MD said this next cast will be above the knee on both sides and a little shorter in the torso, too. He said a lot of kids are able to stand and figure out walking in this version--we'll see. It'll just be about an hour to do the change itself, with additional time to put her under so she doesn't wiggle and have her come out of the anesthesia. Shouldn't be a bad day, and she'll be back at it on Friday.

She's gotten some early birthday celebrating under her belt already, with some more to come. Thanks, everyone, for really good, engaging presents for a kid who's immobile--some really good stuff!

I'm okay. still struggling with the right arm swelling and my chest has felt very sensitive and bruised lately, but that's kind of an average day for me.

We went to Milwaukee for the weekend for a variety of reasons (b-days, motorcycle rally, babysitting/extra hands, quality family time, nostalgia time). The ride there was just me and Olive and we got stuck around Oconomowoc for about 30 min of extra slightly-cranky time. But I got her jamming out to the right music and things turned around. The way back was smooth sailing as she enjoyed some new presents and learned how to rock on her toy piano as she's dancing--very cute! It struck me part way through the ride back how different it was from many, many long car rides in the last handful of years. I can't tell you how many tearful drives I've had to & from visits as Mom and other family were sick and declining, as I processed my own diagnosis... It's nice to feel like there are more happy things to focus on at present. Not that things aren't still hard, but they're not feeling as heavy.

July 31, 2011

Super Trooper

The day before, enjoying one last swing. None the wiser?And this is before they gave her the happy juice... She just got all silly and noodley.
Dr Elmo having his pre-surgery time out, making sure they've got the right leg...

Recovery room--you can see how far up the cast goes (covers her belly). She didn't look as bad as I had thought she might!
How she looked through most of the night in the hospital...

Doesn't care about the cast, as long as Daddy can hold her on his lap and she has Sesame stickers.

How she rolls. This stroller is her main scene, what she eats in, etc. Don't know why she looks like she has mumps.

She has another check-up this week, and then the cast change is scheduled for Aug 11th (a day after her birthday--how fun!) This week she's been a little more prone to crankiness. Me thinks the novelty has worn off...

Off the Wagon

Sorry, folks. Too tired and brain-dead to write last week. I just felt incredibly behind and incredibly tired all week. Took Friday off and started to get better, could use a month off to really get my act together...

I thought I wanted to dive right back into life and keep moving forward, but there are days and weeks that it's hard to be normal. My life both sped up and screeched to a halt last year, and now I come through it and feel like I'm about 15 years older than I should be. But the flip side is I'm happy to be alive and love so much of my life and my days--I just can't keep up with them.

But to make me feel better, I will finally post a photo essay of Olive's big surgery to-do!

July 25, 2011

Back to reality

Lovely weekend--I won't inventory it, but I'm happy to recommend where we stayed, where we ate, etc., if anyone else is going to Sheboygan. It's a nice town, not too touristy. Enjoyed time at Kohler Andre park walking around yesterday--I was hoping to swim, but forgot how dang cold Lake Michgan is! Still lovely. Only downside? Was not able to enjoy the whirlpool tub really because my arm was still very swollen and getting worse. But oh well.

I'm a little shaken today. One of my big supporters throughout my treatment was just diagnosed with cancer and will have one intensive month of chemo. I wish I felt like some sort of elder stateswoman of cancer, full of wisdom and all the tricks you need to make it through. Sucky.

Happy birthday, bro! Hope you've finally forgiven me for stealing your birthday thunder...

July 23, 2011

Another year...

older? Wiser? Debatable.

This much I know, though there is plenty I don't know. I have made it to this year! There have been many bad things in that year, but I can also feel liberated from a lot of things. I've confronted my own mortality earlier than I should have, and now a lot of other things (fears, worries) pale in comparison. I'm going to try to enjoy that. And the rest of our weekend in Sheboygan--goodnight!

July 17, 2011

Keeping up appearances

Winding down a busy weekend. We missed Ben as he travelled to Ladysmith and back, but got to enjoy the company of Julie, Dad & Carol. It's hard on Olive when it's so hot (and getting hotter)--she gets very stir-crazy. We did have enough of a tolerable window on Saturday to get to the playground and figure out she could ride the see-saw! And this morning we had breakfast where she could watch the airplanes take off, so that was a hit.

She's continuing to adjust well--luckily she's been easygoing enough for a toddler and talks about what's on her mind. The full Friday at daycare went well, too, though sand and casts are never a good combo...

So as for me. Well, I'm a mild mess. Back & shoulder aren't happy, and my arm's swelling nicely again. But it's manageable.

I did choose to cut my hair again (with the clippers). Cut off about 3/4", back to having it about 1/2" short. I've decided that I'm sticking with it for a few reasons. For one, it's very easy, especially while we've got other (immobile) things going on. But the other part of it is a little symbolic. I've gotten a lot of people be very excited for my hair growth, very encouraging because it is a sign that I am recovering. Don't get me wrong, I appreciate that! But I think I've talked about it here previously that the nature of the world these days is to want to move on as fast as possible. The haircut is my way of saying to the world that I'm still processing this, still feeling like I haven't mentally caught up to all that's happened in one year...

Back to work today--luckily nothing time-sensitive needed the first day back! Since I didn't set a day this week for Olive Training and it's short notice, how about next Monday evening? Maybe 6:30-7:30? Get in touch with me through here, e-mail, or phone if you'd like to participate in learning her needs (as Kathy said, it's really not that different).

July 12, 2011

How we're doing

(I am stopping the Good day/Bad day thing, because I will obviously not be blogging everyday and it starts to become a little meaningless then. It was much more pertinent when my bad days were very, very bad and good days were a special victory. Now, just assume things are fair-to-middlin' unless I say otherwise.)

Hanging in there, all around. Olive, I would say, is pretty close to full-steam ahead, minus the mobility. She's really not noticeably extra-fussy, and the next couple of days of cooler temps and less humidity should help us all. She would be outside all day and all night if we let her, but boy is she a sweaty little girl! Her one new feature since the surgery is now she says "owie" for any time she's mad, wakes up fussy, etc. Cry wolf, my dear...

She had an ortho appt this morning and all looks well with her x-ray, i.e. the hip is still aligned and doing what it needs to for healing. Cast change between 4-6 weeks (they'll just send the appt time), so that'll be a outpatient procedure with some anesthesia. Otherwise they were pleased with how she was doing, and she got lots of complements on her blue toenails (to match the cast). Then I dragged her and Kathy with me to work to say hi to everyone and she was a good sport!

We're getting close to the daily routine again. The hardest thing is the nights for the rest of us--we have to work in diaper changes at around 11:30pm and 3am to keep up with keeping her cast dry, so we're still negotiating what that looks like. At least we've had Kathy here a lot to help (Ben & I made it through the weekend, though!), and at least we don't have to work in nighttime meds, too. She has been very comfortable and done with the pain meds for a while, and even Tylenol isn't really needed. Tomorrow I'm bringing her in to day care for a re-orientation and logistics session, and I'll have her do a partial day of it Thurs and a full day Friday before I go back to work next week. I think she's bored of me, anyway.

We'll get a photo essay posted soon so you all can see for yourself...

I am also okay. I don't have the endurance of the rest of the folks around me, though sometimes I try to fool myself. The heat really takes it out of me, too, but then it's a good reminder to me of how Olive's feeling. A few days where my back has been really angry about the extra lifting, though I think we're all getting smarter about that, and my shoulder is stiff but not a lot worse. No more appts for me until August.

In the meantime, a busy summer continues. This coming weekend Dad and Carol visit and Ben goes motorcycle camping, next weekend Ben & I are going to Sheboygan for my birthday weekend getaway, then a couple other things on the horizon.

I am mulling over an idea. I'm thinking that I might hold an Olive Training Day (really probably just an hour or 2) for anyone interested in learning her care needs and being a part of the summer babysitting pool... Just to go through the new routine and cast care all at once and see who's really feels like diving in. Maybe next week? I'll say more when I make up my mind.

July 8, 2011

The Long Haul

Good day/Bad day? good

Happy Anniversary (yesterday), my dear! 9 years of wedded bliss. Or of working it out as we go.

(Don't be fooled--we've known each other a lot longer than that. In fact, this year will be the year that I'll have known Ben half my life. We are no longer as young, and I would say we are less dramatic, but this past year has not been consistent with that.)

But, as I said to him during dinner last night (yummy, yummy Sardine!), though neither of us would choose to go through all we've been through this year, there is no one I'd rather have with me through it all...

No matter what, we respect and love each other. We are partners, and though we may take different routes, I know we will end up at the destination together. We find balance, so if one of us is low, the other will raise things up a little, and we see-saw until we get back to the middle. And all this is the stuff of life, what you go through when you care about other people, but I am especially lucky that he has chosen to care about me.

July 6, 2011

Better days

Good day/bad day?: wanted it to be better than it was...

Long story short, I got kind of down today doing a comparison to a younger, pre-cancer me. Ben & I were driving and his power steering went out, and in the course of discussing other things we had to do for the day, I realized I would not be able to drive his truck with my bum shoulder. Then I thought to myself, "I USED TO DIG HOLES FOR A LIVING! This is wrong..." And it is. Seriously. I had my last OT appt yesterday, and during our discussion she reminded me that I would still be making scar tissue for probably another year. Which means I have to be much more vigilant with my shoulder, with my arm swelling, all of it. I also need to rework/remodel my chest scars actively or they will contract me forward more and more.

On the plus side, apparently I still have enough residual something in me that the mosquitoes aren't quite sure what to do...

Olive had a wee bit of extra cranky in her today. It's hard to tell how much is residual pain and how much is frustration. If you ask her if anything is ouchie, she always says her elbows (possibly her favorite body part). Don't get me wrong, she's still many sorts of delightful, but I think we will all be a little relieved when she's back in day care--the kid needs a lot of entertainment in a day!

Tomorrow= special day...

July 4, 2011

Ins & Outs

Good day/Bad day?: not bad

It's a lot like having a newborn at times, this Olive business! I should catch you up to speed--sorry, just been pooping out at night when I go to sit down and write.

So, for starters, Olive is a Good Kid. It's true! She's handled this pretty well so far. Her hospital stay went fine--surgery was longer than expected because the tip of the suturing needle broke off and they had to reopen her hip area to be sure it didn't fall in the joint. They were sure--didn't see it, didn't show up on x-ray. Everything else went fine, and Olive is now the proud model of a light blue fiberglass cast. She didn't look nearly as bad as I expected in recovery, was easily comforted. I spent the night with her, and she did okay but they were monitoring every hour or 2, so that's how long we each slept! She had some pain that came and went quickly usually, likely muscle spasms, and the nurses did great keeping up with her needs. Thanks to Julie and the Dittmars for hospital food deliveries, and thanks to Ben's parents for sticking it out with us. And hooray for the Elmo books and stickers--that's all she needs to be happy most of the time!

She was discharged late afternoon the next day, after we figured out with PT what we could transport her in (they lend out special car seats, and we also found she would fit in her umbrella stroller). Yay for the stroller thing, because then we can use it inside and have our hands free! What else are we figuring out? Bean bag chair, also for hands-free, and got a special infomercial tv tray that tilts and gets very short to use for her to eat and put toys on. Up until then we'd had to sit with her on our laps for meals. She's heavier, but also less wiggly and that helps a little. Diapering has been manageable. It's a 3-layer system with a maxi pad and newborn diaper tucked into the cast hole, and then a big diaper around the cast on the outside. So far, so good with the major blowout risk--just watch what you feed her, people!

The newborn thing comes at night--we've had to keep her on a very regular medication schedule every 4 hrs or she lets us know, and we've been instructed to check her diaper every 2-3 hrs to avoid leaks. During the night it's been 3 hrs, and we might be able to stretch that to 4 soon. Just getting back on schedule. So right now it's a lot of waking up. Thankfully Kathy is staying and helping with a lot of this, and we are taking full advantage of the extra set of hands. Olive does take more entertaining now, but less corralling. She's realizing what she can't do and gets kinda mad--a continuous battle to remind her to "use her words" instead of whining. Also needing constant encouragement to not use her pacifier. But we're getting there.

At our friend's 4th gathering today and talking about the ole cancer journey, and it just dawned on me that I survived f-ing chemo and radiation--I mean really dawned on me how tough that is! In yo' face...

June 30, 2011

Recovery

Good day/Bad day?: alright, considering

Olive's surgery went well even if it took a lot longer than usual. She's resting well, we're getting pain under control (muscle spasms are the most uncomfortable part). Mama sleeping at hospital, Daddy taking care of some stuff at home tonight. She's a good girl--in a pretty good mood when she's not obviously hurting. Had her first jello experience, too. We'll post some pics soon, maybe even some of when they gave her the happy juice before surgery...

June 29, 2011

The Build-up

Good day/Bad day?: Phhhht

Long week just to get to Thursday...pretty full days, including a Gilda's Club orientation/tour on Monday evening with Ben and lots of rigamarole in my head to get ready for the surgery. It's one of those things where you get to a point that you've preplanned as much as you're mentally able to, and then you just want to get it done so you can actually start figuring out all the things you know you'll need to figure out. Same feeling for Olive's surgery as it was for all my treatments, I guess. Once it's happening, even if it's crappy, at least you can act on it!

Surgery is 11am, should last a little over 2 hrs. I go back and forth between telling myself it's a pretty routine thing and doing the "NOT MY BABY!" internal cry. We'll see how it goes--one of the worst parts my just be dealing with her when she can't eat all morning... Other than that, I'm totally mentally checked out.

Thanks to all that are offering to help, sending little gifts, making cookies, etc. It always helps to see these tangible signs of caring when we feel like it's us against the world.

We'll keep you posted--I'll be staying the night with her, so we'll get word out as soon as we are able...

June 25, 2011

Anniversary

Good day/Bad day?: Good

...or Happy Crapiversary, or the Worst Year of the Rest of My Life. Oh, whatever. I don't know quite what to think to put this into perspective as a date. One year ago today, I received my biopsy results and cancer diagnosis. I was at work, had my office to myself, and called the poor nurse practitioner back to get the news over the phone. What happened next was all a blur--don't remember who I called, who I told at work, how quickly I got out of there...

So now what does that mean? Is today when I consider myself a 1-year survivor? Or a year after treatment? It starts to all seem a little arbitrary. Ben was wondering why I wasn't more positive about this year marker, thinks I should celebrate that I fought this and made it through, largely intact:). Well, I guess it can be a starting point. As someone said to me today, time to stop being on defense and start being on offense!

So I spent a lovely, busy, draining day hanging out with my favorite gal (3 playgrounds, farmer's market, bike ride). I also had a break in the middle of the day to finally get in for some more craniosacral work. There's so much hurt and strain stored in my right shoulder, it's hard to undo but she made some progress. I've spent this last year remodeling and protecting myself so much that I feel I was actually transforming into a turtle and hiding in a shell--my shoulders slowly getting stuck more & more forward. Time to start working off some of those layers. Time to start working through some of this business.

(BTW, night #1 of Operation Big-girl Bed was a rousing success. No trying to crawl out of bed, slept as well as usual, woke up and just started rolling around and playing with her stuffed animals. I thought for sure Ben or I would have to sleep in there or she'd want the crib--guess we can officially move that out now!)

Thanks, all, for being there for the long haul...

June 23, 2011

Flashback

Good day/Bad day?: not bad

The last couple of days have been so-so--yesterday was a full-day training (woo!) for work, followed by dinner out with the hubby (thanks Julie!). Today, work, work, followed by home time while Ben was out & about, with help from Myra to entertain Olive. Ben & I sat down with day care this AM and talked through the cast time--they are fine with it all, feel well-prepared because they had an older kid in one a year or 2 ago. They're good folks. She'll stay with her same group of buddies most of the time, too.

I had a weird moment in that training yesterday. Something the speaker was talking about triggered a flashback of sorts for me, and I could feel some of the sensations I had while I received chemo--that weird, chemical nausea feeling. Hope I don't have too many of those...

One week of mobility left. She's making the most of it, nonstop. Want to think of a place to take her for swimming time before she can't.

June 21, 2011

Okay, okay

Good day/Bad day?: okay

Alright, people, just checking if you were awake! I appreciate the response to me feeling guilty, feeling like I should do more, etc. Sometimes a girl needs to go fishing for a little affirmation that she's okay, that she still has the understanding of people as she needs to keep asking for help... because I do need it. In the course of all this, too, I feel like I need time and space to process all of this and decide what the heck to make of this experience. But it's a lot to ask for a full understanding--I know that. I'm okay with that, too.

Olive is not a fan of thunder. We tried to make it a little less scary by imitating the thunder sounds. We'll see how well she sleeps tonight...

June 20, 2011

Lazy

Good day/Bad day?: long

Happy Belated Father's Day, Dad & Bruce! And Ben! And the rest of you, too.

The weekend was busy and hot and humid--sometimes that's what overtakes me. Good things to it, hung out with the Montana girls for a while and that was nice, but part way through it I just hit the wall and almost couldn't function. It had been a long Saturday outside, even with a nap, and I'm fight off what I thought was allergies but is turning into a bug (nice phlegmy cough). Felt like a dishrag.

Tried to give Ben a nice Father's Day--made him breakfast and he got to go fishing--but again was really wiped out. Today, same thing but there's too much happening at work to miss days until the end of the week. Ever go, go, go and feel like you're not getting anywhere? That's how I'm feeling. Too much to do always, and I feel if I sit down for an hour that I'm being lazy, when in fact that's what I want to do more of. It's a fine line to walk, and I can only think about how I'm just leaving things for me or others later. Trying to work it out.

I haven't figured out what it's going to be like when Olive's immobile--part of me thinks it'll be less work chasing her around, but then I think we'll have to compensate with more mental stimulation. That might be equally as exhausting for me right now. My brain is not at full throttle very easily these days.

But anyway, woe is me. Switching notes, Olive got her first real haircut (thanks, Holli!) into a cute little bob with bangs. Very cute, still gets full of sweat and sunscreen after a warm day! And I broke the news to Ben tonight that I'm keeping the hair clipper-short this summer, will plan to grow it out after the cast maintenance time is over. I have to say, it's the one haircut I've ever felt really confident about--like there is no other better hairdo I should try at the moment, because this is the option...

June 16, 2011

Resentment

Good day/Bad day?: pretty good but tiring

I've been having some full days at work lately, which for me is a long, long day. I'm feeling a little bad about taking extra hours or days off because I'll be taking 2 weeks for Olive's surgery/recovery.

So, I haven't talked a huge amount our marriage here because I want to keep a lot of what is between Ben & me just between us. But I don't think it's too much to reveal that--guess what?--all of this has been a big challenge for our relationship. The cancer and the surgery and the treatment was enough, but now just as we try to take a breath, there's the next challenge. And then there's all the changes to me that won't go away. And there's all the concern for what this could mean for the future. And for Olive's risks. And risks for another kid. And. And. And. And this is the stuff of a life together.

Needless to say, Ben & I both have our fair share of resentment toward this stupid disease. Unfortunately, it can become easy to let that bleed into resentment toward each other. Or at least the impression that there's resentment toward each other. Of course, still feeling a little vulnerable and guilty with all this havoc, I'm very prone to guessing that it's there. We're working it all out, but needless to say there have been more deep conversations about the state of things than a thousand Bens would ever sign up to have. So we keep at it.

Just like Johnny and June...

June 14, 2011

Bragging rights

Good day/Bad day?: Good


Just a quicky tonight. Had my one month follow-up with radiation oncology today. Wow, was that the longest month ever--it all seems like forever ago! Good that it seems far-removed, I guess. I got kudos on my skin healing well from the MD, thanks especially to my age. Way to go, me, for getting cancer so young!!

Anyway, just had to brag like a proud mama. Olive counted up to 8 today, only forgot the 1 and 6 a couple of times, but overall pretty awesome! She's also pretty excited that she knows she has elbows now, loves airplanes "up in the sky"...

June 13, 2011

Back to business

Good week/Bad week?: pretty good

We're in kind of busy-mode until Olive has her surgery, so I'll be a little more sporadic these days. What to catch up on? Pretty ordinary week, and then we had a nice, but too short, weekend up in Mpls visiting Monikandyland (with a new, adorable attraction!). Always nice to spend time together, even if our attention is severely divided these days by a toddler and an infant... It's amazing how quickly you forget the not-sleeping days, but I guess the lack of sleep is exactly why it's a blur. I was fully prepared to be struck by baby-fever, but while I really liked spending time with her, it didn't make me feel like I need to have one NOW. I guess my body's trying to be reasonable with me and cut me some slack so I can recover for a while--then we'll see how hard that ongoing decision becomes.

In the meantime, we prepare for Miss Olive's Special Summer. She had her pre-op appt with a nurse practitioner on Thurs and it's all-system's go. She'll likely be out-of-sorts for a week to 10 days and then could go back to day care. I'll plan to stay home with her for 2 weeks and hope we've got a new routine down by then. In the next weeks we need to transition her to a big-girl bed, too, so we don't spring that on her at the same time as the cast. It's going to be impossible to lift her in and out of the crib with all that weight, and the bed will give us a surface to change diapers on, too. One of us will probably sleep with her to get her okay with it, so it may be a long few weeks here.

I'm trying to look on the bright side of the whole ordeal, too. As I watch her play and know about it now, I can see that compensating for that hip really tires her out some days, and she definitely gets more clumsy. She really wants to jump, too, and can't quite get that to work. It'll be good for her to get back on track as soon as possible. AND, she'll be a captive audience all summer. It's not like she isn't constantly on the go right now, so once we figure it out we'll have a lot less chasing and herding to do. Got some shopping to do--twin mattress, bedding, bean bag chair (for propping her up), maybe a wagon, stationary activities...

I'm still feeling old, sore, worn out. But okay, too. My new gauge of time elapsed is my toenails. ? Well, since the chemo messed them up royally, there's this definitely line about midway where the sickly nail ends and the healthy pink nail begins. Don't judge--I notice quite a few details about myself these days.

Strawberries ripening, baby robins in our front yard...

June 6, 2011

Break

Good day/Bad day(s)?: pretty good

Took a little break there. Thanks for checking back. It feels weird to write about my days now, because all in all they're not so out-of-the-ordinary. Which is fine, isn't it? You don't need to hear about my day at work or grocery shopping, etc... It's more about where I'm at overall.

Not bad. What's still lingering? Here's the updated laundry list. My R arm still is having swelling, especially after another day popping out weeds yesterday--very noticeable puffing! My chest is still tight, makes me want to hunch and curl forward automatically. Then my R shoulder pulls forward and the shoulder blade doesn't move right, so I have to keep mindful of that. If I have a day of more Olive holding, it's much worse.

Fatigue? Yep. I don't hit the wall suddenly and irreversibly like I did during chemo & radiation, but it creeps up on me. Ben & I went to a wedding outside on the beastly humid 90s day here last week, were out in it for 5-6 hours, and the next day I was totally spent. Felt like I sweated out everything I had (though it was a fun night!), had to take a couple of naps. It might be a rough summer. But I guess Olive won't be able to be out long with the cast, so we can hang out in the a/c together.

Brain? Ugh. No initiative, no ability to follow through. I can have moments of clear, useful thoughts and clarity, but then I just get distracted for quite a while. (Squirrel!) I've got a lot of stuff half-completed at home and don't know when I'll get to the other half.

Enough about me. For the more fascinating stuff, Olive's had a language explosion! She wants to repeat everything, is putting together phrases on her own, super observant (picking out little details in books, hearing every airplane that flies overhead...). She's been a lot of fun lately, if not also testing out her sass limits a little. Favorite words these days? Well, the "thank you, mama" gets me every time. Also " I see you", had her saying "cool rock" ("coo gock"). Plenty more where that came from. It just keeps getting more interesting!

May 31, 2011

Want/Need

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

Interventions

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

Pic-a-nic

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

Milestone

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

Yeouch

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, giraffes...it 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

Delight

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

"Brisk"

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...

April 30, 2011

Grrrrr

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...