September 30, 2010

Date Night

Good day/Bad day?: Good


Yep, that's right, Ben & I had a grown up dinner! (Thanks, Dianna, for the sitting!) Then came back home to shave my head. You know, the usual...


(For those that want the restaurant review, we went to Cilantro, the new Mexican place. I thought everything was very well done, delicious, service great, dessert options wonderful! But I do see Ben's point that it's a little more expensive than most Mexican restaurants... But there's a lot on the menu I'd like to try. Still, it is on the West Side...ugh.)


So yeah, I won't say the shaved head looks great. It's stubble--I'm not going through the effort of shaving with a razor--so it's dark and patchy over pale skin. I feel very much like some dispassionate alien race encountered on a Star Trek episode, esp taking into account my other mods (you know, flat chest, port in the arm...) I keep getting pared down, thinking maybe I should just get rid of my other spare parts (maybe appendix, tonsils...)


Ben will be posting pics of the head very soon. In the meantime, here's a new Olive pic that's the bee's knees. Every time I look at it, I can hear her giggle!

September 29, 2010

More pooped

Good day/Bad day?: Good

Just more exhausted again, but went to a conference today that was informative. Tomorrow night--dinner out! Then we will shave my head more--it's getting really patchy, so I'm going to wear a scarf to work tomorrow...

That's enough for now. I'll get more wordy soon.

Buzzzz...

September 28, 2010

Exhausted

Good day/Bad day?: pooped, so-so

Just tired out. Worked a full day, then Olive was off her schedule and we had another window appt. Didn't even get to hear Obama's whole speech.

Tomorrow's a new day. Good feedback on the haircut so far...pics to come soon.

September 27, 2010

Loss

Good day/Bad day?: Sad

I took the day off and went to say goodbye to my grandma Alyce, my last living grandparent. I haven't been talking much about it here, but I want to honor her and say what a wonderful, loving woman she was. She taught us all so much about the important things in life and showed what true strength was in her 98 years. I had wonderful times with her, would spend weeks there in the summer when I was young. I will miss her terribly.

That's enough to talk about tonight. And the Packers have been charged with winning in her honor...

September 26, 2010

Preoccupied

Good day/Bad day?: Not the best

Yucky early AM, then some good and less good times throughout the day. Hanging in there, though. My mind is elsewhere as family issues are on my mind--something I'm not going to blog about, but no fights with anybody or anything like that...I'll keep you posted when I'm able.

So the hair did move into "gobs" territory and is starting to look thin-ish to me, so I think I'm biting the bullet tonight and having Ben shave it off. Prepare yourselves for the next time you see me...

September 24, 2010

Round #5

Good day/Bad day?: Yesterday was good but busy, today...chemo #5

I had acupuncture yesterday, really liked the practitioner, but she won't be around for a couple of weeks so I'll have to find a backup. She really recommends weekly treatments all through my chemo regimen, so we'll see if I'm able to swing that. She did say, "You don't have to feel as bad as you are now" as I go through treatment--those are reassuring words to hear. It's not like I'm stuck in bed for the week, but I certainly have symptoms every day and lose a few days of the week that are worse. We'll see how I feel after a few sessions.

Today was an early treatment, so took a nap after that, woke up green, and now I'll be taking it easy for the rest of the day. Not much else new!

It's the time when eveybody has their pink ribbon fundraising campaigns... Can I tell you that the strangest one for me is Activia yogurt--shouldn't they maybe focus on colon cancer or something?! That, and the campaign is called "cups of hope"--ew, and a little too punny when talking about breast cancer in my mind.

September 22, 2010

Regular is okay

Good day/bad day?: Okay

Regular ol' work-a-day kind of day. Just lots of busyness and rigamarole going on right now, including at home. We're looking to get new windows, so many, many appts for quotes...yawn! But it'll be nice. Right now our windows are kind of archaic, and the screens are weird and don't fit well, so we hardly ever wind up opening the windows. Not ideal. Oh yeah, as I'm typing this I'm just thinking ahead of when they'll actually do the work, etc. I may be looking for another place to crash...

Pleasant surprise--there was a cancellation for the acupunctuist for the cancer clinic, so I get to see her tomorrow! Otherwise my first appt wasn't until the end of Oct, but now she works in return appts for people she needs to keep seeing. It should help with the nausea and fatigue ongoing, and during the second treatment phase it should help prevent nerve pain/damage. But it won't reattach my hair. Still not noticeable from what I can tell, but it's a little gross as it keeps falling out!

FYI, Olive seems to be well through the last round of teething, and now the kid can grind! I know it's not a very exciting first word, but she has been saying "hi" very clearly for a while, and is getting better at mimicking other words. She's also an expert at finding the little mouse in Goodnight Moon.

Ben is developing a calendar to track when he'd like some days free, so we're going to try planning them out with a little more warning. Stay tuned, you may be asked soon!

September 21, 2010

Slackin'

Good day/Bad day?: Eh

Sorry I've been in the every-other-day habit, but the nights have seemed busier than usual. Having some good moments, but my good days aren't feeling as consistently good anymore and my appetite is going south in general. Not the same as some of the other nausea, but just a feeling like there's something in my throat that makes it weird to swallow and I have an ongoing not-great taste in my mouth.

So I feel like a bit of a train wreck the last day or 2, esp I think there's a mental component when I'm pulling out gobs of hair. Well, maybe not "gobs", and train wreck sounds extra-dramatic, but you get the gist. At least I still feel like I have my moments of clear thought and even some okay ideas at work. And Olive seems pretty happy--she was sooo chatty on the way home from day care today. It's great!

Thanks to Julie for coming over last night so Ben could feel good about going out to a show...

September 19, 2010

Getting mad at it

Good day/Bad day?: Okay

I had a pretty good first half of the day--we went out for breakfast, then I did make it to the yoga class for cancer survivors. It was nice because it was essentially just a regular yoga class, no sitting in a circle talking about our feelings, but there were adaptations for those of us with arm limitations, some special poses to stimulate detox, etc. Glad I went. Then I hit the wall in the evening.

When I hit the wall, I have to hand off any sharing of Olive duties, and tonight was one of the few nights that Ben said it made him mad--not at me but at my cancer. Good for him for saying it, since he probably is a lot more than he verbalizes. It's still hard for me to separate the mad at it vs mad at me, though, because I feel like I am letting people down when I have to officially tag out. I try to just ease back as my energy flags, but there are some times when I can't fake it and can't push myself and just have to be done. Makes me mad, too.

There's been folks who have collected funds for us to hire a cleaning service. I REALLY would like to start that, but right now it's too hard to arrange the timing, somewhat with Olive but really with Punkin'. It's more logistics than we can muster right now. I hope no one will be offended if we change it to a "Wellness" fund. I'll be starting acupuncture very soon and it would go to that, potentially some supplements, and also the copay for seeing my oncologist every 3 weeks. This is NOT a solicitation for more funds, but I just want to put what's there to good use and notify the donors of the change.

Did I tell you my hair is starting to fall out? It's official. I'll be a while before it's noticeable, since I have enough hair for 10 people.

Yikes! Olive just woke up screaming. Never had her teething this badly before (getting molars). Talk about getting mad...

September 18, 2010

Quiet day after busy

Good day/Bad day?: Mediocre--again, feeling low is boring!

I did manage to get everything done yesterday! I woke up feeling better than Thurs, taught the AM training, ran to the hospital for MD visit and chemo, then ran right away to the resale and loaded up with Olive clothes for the next 6 mos. Whew! I was feeling it and was green by the time I got home.

Today is lying pretty low day, though there's always plenty to do when there's an Olive around. Tomorrow I signed up for a yoga workshop for cancer survivors, so we'll see if I'm up for that when the time comes.

September 16, 2010

Weird day

Good day/Bad day?: See above--good then bad

It seemed to be a normal day, like Thursdays have been so far (Fri-Mon iffy, Tu-Th pretty good). Worked a full day, including teaching, and then the minute I got home I felt like crap! Washed out, not nauseous but woozy, not good. Took a nap and it didn't really help, but maybe now it's going away. Cross your fingers, because I'm supposed to sneak a class in before chemo tomorrow.

Starting to see some more of the physical chemo effects, namely some hair starting to fall out (nothing dramatic yet) and my fingernails starting to turn dark . Oh yeah, I wore my boobs to work today! A few people noticed, most didn't or at least didn't say anything. The first day I had them on they had started to get heavy and hard on my chest to support. I wasn't sure I could physically keep them on all day, but it was fine. But I don't need them and won't be wearing them always, that's for sure.

Hey, everyone who wants to feel like a good parent even on the rough days, wondering if you're having the video on your news of the toddler wandering onto the highway... I think I can avoid that for much of Olive's life! And I also think I can avoid giving her a joint to smoke, too (another news story of a parent giving her toddler weed). Ah, humanity! Sometimes I can still be surprised by how stupid people can be. I should stop watching the news--I really only needed the weather.

Wish me luck for treatment #4!

September 15, 2010

Day Trip

Good day/Bad day?: Good but tiring

I was very glad to be feeling good and able to go visit Gram--it was lovely to see her and Aunt Mary. I wish I could be there more...

The next 2 days are going to be a challenge to me, teaching things I haven't taught or dealt with in a while. That, and Friday's jam-packed with a class to teach in the AM, then MD/chemo, then to try to make it to the Half Pint resale during my window of feeling okay. I hope the weekend's quiet so I can just slow down.

September 14, 2010

Nothin' special

Good day/Bad day?: Good

Just pretty ordinary. I'll take ordinary. Good work day, good home day, Olive's really getting ready to stand alone and walk--just a touch away.

Tomorrow= day off and road trip with Julie to the 'Nosh (Kenosha).

September 13, 2010

Cancer is Boring

Good day/Bad day?: Boo

See here's the thing. Cancer IS boring. (You're so right, Mia!) It gets really old to feel like crap over the weekends, and I'm just 3 weeks into the long haul. It's boring to just want to nap or rest and to not know how much you'll feel like engaging in home life or activities. It's boring for everyone else, too! How boring to expect that I won't feel up for much and that I'll need help for a long time.

So do you think I can make that into a new slogan, like "Cancer sucks" or "Fight like a girl"? Probably not the right sentiment to capture on a t-shirt, eh?

I'm having a sad night because I can't be with family who maybe doesn't need me, but needs someone. It's a priority, so maybe I can make it happen...

Otherwise, started work later today but got some good things going while I was there, thanks to Sonja (who really doesn't need me b/c she's great at it all)!

September 12, 2010

At the Movies

Good day/Bad day?: Eh, but not as bad as Sat.

I'm still trying to figure out how the weekends are going to go, since they've all been different. Friday was pretty typical now, with the few hour window after treatment to feel okay and then the waves of green. This Saturday, I just felt washed out more than I ever have--an empty husk of me--with some trouble with nausea overnight. I did manage to go to the zoo with Ben & Olive for a little while, and it was good to get out but then I was done. Today is still fatigue and aching.

This is supposed to be the time when I start to see the hair loss, but so far...nope. Then again, as I said before, my symptom timing seems to be much different because of the dosing of the clinical trial. It is still slightly possible I won't lose it, but it may just be happening later. I have to say I'm a little weirded out, because I've typically associated chemo with killing the rapidly-growing cells (the cancer, but also hair, lining of the GI tract). So does that mean my chemo isn't killing as much...?

Oh, I was going to give feedback about the movie In the Family. It was very emotional for me to watch, partially because of the age of the filmmaker and her sister, also listening to many people make their decisions about surveillance, surgery, children, etc. A little too much attention for my taste on her relationship with her boyfriend, but I understand the point. They play a little loose with the % risk numbers throughout the film, but they're usually right (occasionally high).

So, picky things aside, for anyone who is in this position with a possible or known mutation I think it's very valuable to watch. There is SO MUCH that goes into the decisions around the testing and the aftermath. I think that can't be underplayed and she captured it very well. The one really striking thing for me was watching what the parents kept saying to their children (those that have been through it and their spouses)--get tested and take the results seriously! It made me feel a lot of things personally, some good and some bad--it made me feel that my ovaries are still ticking away in me and are worrisome, that I want my family to see this, and that I'd secretly like to draw all their blood and just get the results once and for all--to be relieved or to start greater surveillance. But I know this is everyone's unique decision. Ugh. Why can't things be easy?

Enough angst for now. And enough whining. Time for bed.

September 10, 2010

The Ladies

Good day/Bad day?: Mixed--it's chemo day

Last night was...Date Night! (Thanks for the sitting, Gene, Kate and Myra!) It's been a long time for just Ben & me to go out as adults, maybe since we went to Chicago. For the Madison locals, we went to Graze and would go back in a heartbeat! Good food, local food, not too complicated, lots of comfort food, beer $4/pint--yum. We are so lucky to have so many good choices around.

Today, chemo in the AM, then boob shopping (yes, I wore them home), then great lunch with Julie, and now I'm bracing myself to watch the In the Family documentary--bracing, because I was about 2 min in with tears streaming down my face. This is going to be hard but good. Then I'll nap. I've had a few "green" waves so far...

FYI, I'm very pleased with my boob choice, but not sure if/when to wear them. It's funny how quickly you get used to a new normal, and I've become accustomed to the totally flat world and have an appreciation for it. I just don't know how I'll know if it'll be a boob day or flat day...it'll only come with experimentation, I guess! Oh yeah, and the swimsuit--okay, but not in love. I'm waiting and I may keep looking.

September 9, 2010

Pumpin' "iron"



Who can lift a 24lb baby plus diaper?

Jenny, that's who. Goodbye lifting restriction!

September 8, 2010

Odds & ends

Good day/Bad day?: Good

I think the fatigue is starting to set in--mornings are really hard to get going! I start to think it's mental and I'm just taking an opportunity to be lazy, but I have to keep in mind that my body is working very hard right now...

Tomorrow is work, but then I cut out early for an appt with a doc in the UW Intergrative Medicine dept that works with the cancer clinic--I'm eager to see what comes of it! It's a little tricky for me right now, because I know that a lot of complementary medicine involves dedicating yourself to a practice or regimen. I'm already having to dedicate myself to my treatment regimen, so it will be finding a balance of helpful vs more work than I'm up for. We'll see. I also have to determine what the insurance coverage of the services will be...

So, I want to send out a message to everyone that (no surprise) I'm way behind on thank you notes--for thoughtful gifts for me, for meals, time, treats, and also for Olive's birthday! I do intend to get to them soon...and I sincerely am grateful.

I have a time booked for Friday for the breast prosthesis fitting. Got to snap up that swimsuit I saw, too!

Tomorrow is getting my arms back day...

September 7, 2010

Fathers & daughters

Good day/Bad day?: not bad

I don't know why it feels harder to go back to work after an official long weekend compared to all my unofficial ones, but I was dragging my feet today. But I did get a few things accomplished and finished the day up a little early.

Crossing my fingers makes it hard to type, but Ben may finally be on the mend. Not feeling outstanding, but better enough to get flustered about what's not done around the house. Welcome back!

Last week I talked a little about my mom and thinking back on her long-time journey with cancer (10 yrs, age 50-60). Today I want to think about my dad. I know that others have said it, but I want to say it clearly that there is no reason to feel guilty and responsible for this. That should be a given, but I know how our minds can work. Where we are today for what we know about breast cancer is miles from what was known when I was born. That's easy to gloss over, but it's really important. There was no knowledge of specific genetic mutations then, no way to check for them--there was just the hunch that a family history would make you more susceptible. You can't (sorry, shouldn't) feel responsible for having a daughter with cancer when there would have been no way to predict that.

I know the feeling, though. I've talked to a few people about this, but I have a daughter and a known genetic mutation, so she has a 50-50 chance of having it, too. It's a little different for this generation. I struggle with kicking myself for not pursuing the genetic testing before I had a child, of just saying I know I have a strong family history and that's enough to know...and now that I know, should we consider having another child down the road? I don't have a good answer for that. I do realize what I said above applies to me, too--that where we'll be technologically when Olive becomes an adult is eons away from what I can imagine right now, and I have to hope that means there will be some better solution for her than removing body parts.

This is a good segue into the recent news about the ovary and breast removal for BRCA carriers and the increase in survival and reduction in cancer. The Washington Post has a good summary of it if you want to check it out (search BRCA), and the actual study was in JAMA for those with access. Another genetic thing--I'm waiting for a movie to come from Netflix that was a PBS documentary, "In the Family", about a woman who finds she has the mutation and is deciding what choices to make. I'll give you a review after I watch it, and there's a website with ongoing discussion about breast CA genetics via the film: http://inthefamily.kartemquin.com/

To make the plural "fathers" in the title applicable, just wanted to say that Ben can get the best giggles out of Olive by far. Good Daddy!

It's getting old

Good day/Bad day?: Okay

I'm just really done with this virus going around and taking down good people for a while. Ben was miserable all day (Monday) with a severe headache, and Julie had the same thing a day or 2 before. Luckily, and thankfully, Julie was well enough to come to our rescue and help us out. So much for a nice Labor Day (we were going to try to go to the zoo...).

My WBC counts are jacked pretty high from the injections I'm giving myself, so lucky for me I'm avoiding the whole mess--just dealing with the fallout!

Off to work...

September 5, 2010

Falling down on the job...

Good day/Bad day?: Good and tiring

No, the title is not literal, it's that I've fallen a couple days back in posting. I just wanted to even out a little after round #2 of chemo infusion and see if a pattern is emerging yet.

So the day of chemo I can go along well for a few hours after the treatment, then I hit the wall and turn green. The rest of the night is like that, kind of light-headed and tired and nauseous. Saturday and Sunday went along pretty okay, like a day of pregnancy-nausea with each day getting a little better. I reach a point or 2 each day where I hit the wall and need rest.

We also had a changing of the guard for helpers again--'bye and thank you to Ashlie! Hi & 'bye to Kathy and Bruce! Then thank you to Mia for being around all of today--it was fun, and sleep well! This coming week is a change...I get my arms back!!!! Thurs officially I'll be off the 10-lb weight restriction. I don't know how soon that means I'll be up for 24# lifting, but it ought to be soon. I will do my best to be judicious.

I think this coming week I'll go for my fake boob fitting. My logic is the boobs alone or the hair alone is going to be weird to adapt to, but if I have to pick out boobs with the wig or no hair, that will be exponentially weird. We'll see how that works out for me!

September 2, 2010

Really?!

Good day/Bad day?: Come on...

Seriously world! Warning--this is just going to be a short whine today... The universe has seen fit to knock out both my helpers with fever/crud, leaving me as the most well person in the household. Though Olive is doing pretty well, too--had her 1-yr check-up and gets gold stars (esp on cuteness)! Yeah. Here's hoping somebody is better tomorrow, because it's time for treatment #2 for me.

Going in at 8AM tomorrow, then have the day off. Hopefully I'll get to see a pattern emerge so I can predict my course a little more. Assuming I don't get a fever, too!

September 1, 2010

Keepin' on

Good day/bad day?: It came around

Made it through another full day at work, but it was a little touch & go in the AM--not nauseous, but I've had a headache for days and I had a severe low back and hip ache. It worked its way out for the most part, and I was able to handle another class this afternoon. Even could pull out some answers to tough questions!

I'm not feeling too pensive tonight, so I'll keep it short. If I feel like I need a cry soon, I'll put on some Johnny Cash. When Ben was driving me to the first chemo treatment, Johnny was playing and made me ugly cry. Something about that voice, esp the later Unearthed albums when his voice is more stark, that just puts everything out there and lets you do the same--it keeps me honest. (It's the same with his happier songs, but in a better way--see our Jerkin' Tears blog entry.) I think I freaked Ben out a little, but it was a good chance for me to let out all my fear about what I was about to undertake. I'm guessing this Friday will be a little less emotional for me, since the unknown is gone. Except for all the other unknown. But that's a given.

Oh yeah, Happy September. Yikes! (I've had the Neil Diamond song "September Morn" drifting in and out of my head today...now maybe you do, too!)