Happy Holidays Everyone!

To all my wonderful friends and family. To all my amazing co-workers and everyone at Duke who has been donating vacation time to me. I wish you all a wonderful holiday season and hope that you enjoy this time with your family and friends. Be safe, healthy, and have a wonderful time celebrating. Thank you for all that you have done for me this year. It is appreciated more than I can ever say. Thank you, thank you, a million thank yous. Let's look to 2010 for a fresh start!

Next Round Monday, December 21

So I am going to give it another go on Monday. Ugh. I had an appointment with my oncologist this past Monday and we worked out some changes that may help with all my side effects. She said I could take this week off, but no longer. I can't say that I am excited at the prospect of doing another round, but I know it is important to try and finish.

What is really frustrating is how much I've been suffering and the lack of communication with my oncologist about all that has taken place over the past 3 rounds. My doctor basically told me that I shouldn't have been suffering as much as I was and that it was "highly unusual." She said, and I quote, "When I say that you should be able to work during chemo, I really mean that," which is crazy when I think about how much I've been through over the past 9 weeks. So what in the heck was the PA telling her this whole time? And was my oncologist even reading my charts? And, what the heck is in my charts? All the phone calls we made? Where are they documented? I just don't get it. How could she NOT be aware of how bad this has been???????

But I digress. So Christmas week...I'll be going through chemo. Great. Happy $%#@! holidays to me.

Some good news, my sister and her family are coming to visit the week after Christmas. Let's hope the new regimen works and that I'm doing well the second week!

Kiel Donation Program

Thank you to all friends who have asked if they can donate time off during my treatment. I've learned that bi-weekly and salaried staff (that is non faculty or instructors) can fill out a donation form and turn it into their supervisor to donate. It seems pretty easy, http://www.hr.duke.edu/forms/kiel_donor.html, if you have the time to donate, my family and I would be very grateful. I am scheduled to be in treatment (either chemo or surgery) through March at the minimum, so any time you can give will help. Thanks everyone! You continue to amaze me with your generosity of spirit.

Big Decisions

As you may have noticed, I haven't been online in a while. That's because I've been sicker than a dog since last week. For all of you who know our dog, think sicker than Lucy after she's eaten a pound of Valentine chocolate and I've induced vomiting with a teaspoon of hydrogen peroxide, sick. I'm pretty much a GI mess. It has been extremely difficult and basically my entire gastro-intestinal tract feels as if it has been obliterated. So, what does it mean? Well, for one it means some pretty nasty issues, that I really don't want to spell out in public. For two, it means I don't feel my body or mind can handle another round of chemo at this point.

We've got a call in to my oncologist for an appointment to discuss options. I have no idea what "options" there may be at this point. I'm scheduled to have 3 more chemo treatments between now and January 25, and I just can't do one more right now. Do I postpone? Do I stop? If either, what will that mean for my prognosis? I don't have any answers at this point. Will have to update more after I get in for a consultation.

I'm not planning on doing the December 14 round though.

Next Round-Monday!

Sorry, haven't been up to blogging recently. Have been either battling fatigue & some lingering nausea or have been at work. I know, I know it's crazy. Week three means I get to go back to work. Before you scoff, let me say that when you feel like crap for two straight weeks, going back to work is actually a good thing. Normalcy, good. Sickness, bad. See?

So, I've been working, mostly half days, trying to focus on something other than the fact that I will be back in the chemo chair come Monday, November 23 and possibly sick the entire week of Thanksgiving. Ugh. We are adjusting my meds this go round so I am really hoping that I don't experience the same nausea as last time, but we will wait and see. Maybe I'm being unrealistic in expecting meds to help as much as I want them to, on the other hand, I can't believe that this is really the way it has to be. So it is possible that I will be spending Thanksgiving at the table, but it is equally possible that I won't. Ugh, I hate uncertainty.

And lemme just comment on this craziness that the media is reporting on these days about those whacked out recommendations to wait until you are 50 for a mammogram. WTF people? This is just so freaking insane, I just can't believe it. Yet again, we are supposed to chose to allow ourselves to get really sick before we seek help (to save the insurance companies a buck no doubt), as opposed to getting screened early and potentially avoiding late-stage diagnosis and late-stage treatment. Simply insane. I think we know enough about breast cancer in women under 40 to safely say that if you don't catch it early, your chance of survival isn't good. But I guess those women just don't matter, is that what we're trying to say, cause that is definitely what it sounds like you're saying to me.

Off soapbox, back to blog.

Chemo Monday, birthday party with 9 boys Saturday. Woohoo! I AM CRAZY!

Took the wig out for a spin today

Finally felt good enough to go into work for a few hours today. Whew! What a relief from all that nausea. Last week was from hell. We have to try something new next go round, that's for sure. I woke up with nausea, went to sleep with nausea, and dreamed about throwing up. That really is my definition of hell.

Had to make a Target run today before going into the office and felt it was time to break out the wig. I have really, really, really regretted shaving off the remaining hairs on my head, even though I knew it was time. I feel so exposed with a bald head. I've only gone bald at home so far, so going out in public was decision time for me. Do I wear the horrible wig? Do I go commando? I thought I'd give the wig a try since I haven't put it on my head since the day I bought it. It is a bit scratchy and warm, but I was told it looked pretty natural (although granted it was someone who knows me and presumably likes me that told me. ) I wore it for about 4 hours and couldn't wait to take the damn thing off. But it did help me to avoid unwanted attention in Target.

So I stayed too long at work and got pretty exhausted, but I got some stuff done that I really needed to and I got to be social for a bit. The walls at home were starting to close in, so even work was looking GOOOOOOOOD.

My wonderful husband gets bonus points for bringing home Vietnamese pho tonight. He is so awesome!

Doc Marten boots had to be returned, more on that next post. I'm still kick ass without them, right?

WAH!

Ding! Ding! Round 2

Had round 2 on Monday, as you can see it hasn't agreed with me much. Spent most of yesterday in bed, spending most of this morning in bed again. I didn't even get my "promised" 2 days of steroid protected "good days" so I am bumming. At least the first round I felt okay for the first day after. Yesterday just sucked. Nausea, headache, and body aches. Not even acupuncture helped much, although my appetite is somewhat better today than yesterday.

Still hanging on to the hair, although David commented on my "male pattern baldness" this morning. Thanks, hon. Mostly the sides are giving up the fight, the stuff on top seems to be grasping with all its might. Hang in there follicles!

As promised, I did buy some kick-ass boots over the weekend. I had to order them on the web, nothing in Chapel Hill spoke to my inner 17-year old. So I bought some mid-calf lace-up Docs in black (natch) and will post photos once they arrive. They should be a definite pick-me-up.

Still debating whether or not I will actually wear the expensive wig I purchased. I don't know how different I will feel if I actually lose ALL my hair as opposed to most of it. It is looking a bit on the mangy side right now, but I just can't seem to give in and razor blade it off yet. Hope rings eternal.

I've been awake about 30 minutes, time to hit the sack. Later with more updates!

Losing the hair battle

So I finally gave in and shaved off the hair. Well, David shaved it for me while I cried a bit. I got some support from Bella the cat, who clearly knew I was upset at the loss of my hair. She walked through piles of shaved hair to be with me. That's kitty love.

We have been receiving some amazing dinners from friends and neighbors, thanks everyone. We are still so touched by the outpouring of support we are receiving and so grateful for everything. Thank you!

Yuma finally got over strep throat and went back to school today. I went in to the office to catch up. It is stressful trying to keep it all going, but being at work definitely takes my mind off chemo. I will be at work for the rest of this, my "good week" and will start round 2 of chemo on Monday, November 2. Not sure how it will affect me this time. Could be better, could be the same, could be worse. Who knows. I am not looking forward to it, regardless, but round 2 means one less round to go through. Only 4 more after that. I go every three weeks, so my last one is in late January. Yippee!

Day 12 and I STILL HAVE HAIR!!!!

I can't tell you how surprised and thrilled I am to still be holding on to a full head of hair at this point. I was told it would start falling out in earnest around day 10 and so far I haven't lost anything other than the usual shedding I do on a daily basis. I'm sure it won't last, but for now I'm feeling lucky. Yuma's grandparents just sent me some beautiful scarves from Japan for the inevitable, but for now, yippee!

Thanks again to everyone who has been feeding us for the past 2 weeks, we are so grateful to have this part of our lives under control. You are amazing and your food is too!

I'm scheduled for round 2 of chemo on November 2, and hoping to be back at work for most of this coming week before then. Nausea and insomnia are vying for the title of worst side chemo effect, with insomnia edging out nausea by a very slim margin. As someone who lives for naps, not even being able to sleep at night or properly nap is pretty hard on me.

Emotionally, I'm having some difficulty getting my head around chemo and find the thought of going back in for round 2 still pretty terrifying. Although we now know more of what to expect, it is pretty stressful to wait for something that you know will make you feel so horrible.

Yuma and Caroline are both sick with something I don't want, so we have the Lysol wipes and anti-bacterial hand sanitizer out in full force. I have everyone washing hands more now that the paranoia has set in at catching some awful virus/germ.

I hope Jennifer is doing well on her Avon Walk this weekend, the weather hasn't been so fabulous, so good luck Jennifer!!

More hair updates to come.

So yeah, back to ME

Good news: I am less nauseous. Bad news: I probably won't sleep until 2011. We finally gave in and called the triage nurse about the lingering nausea yesterday. They said I should feel better a week after chemo and I DEFINITELY wasn't feeling any better on day 7. David called the nurse and they switched me back to the heavy hitting post-chemo anti-nausea meds, but who knows how long I can safely take them (David forgot to ask that part.) So maybe I'll lose my hair, but on the bright side, I could grow a second head!

I'm sure this is so 2007, but...

I recently bought Crazy Sexy Cancer Tips by Kris Carr and am finding it very empowering. I don't know why I never heard of this before I had cancer, but clearly I was very self-absorbed! I highly recommend it to anyone who is caring for/living with someone with cancer, it has a lot of tips for the CANCER-EEE, but would be just as informative for the one who deals with all the shit that cancer brings, but gets none of the goodies out of it. I particularly like her side notes of "faux pax" anecdotes and witticisms. Very funny.

I bought the book when I went WIG SHOPPING last week before chemo felled me. There is this fabulous little wig shoppe (that's for David who HATES the extra "pe") in Durham owned and operated by a BC survivor. There are a ton of cute hats, buttons, books, wig accoutrements (that word is for Ronda, who I remember in high school used it for the first time so that I could understand it, thanks, R.!) So yeah, I bought a wig. It sucks, I never wanted to buy a damn wig. Those of you who know me, know I'm vain about my hair. I love my hair, always have. Long or short, I like my hair. Losing it will really suck. I figure I got 2 days left. It will be documented of course. Kate will be photographing the whole process. We're trying to get the kid into art school, cancer's gotta be good for something, dammit!

It's Sunday, that must mean, I'm nauseous!

Thanks to everyone for joining my conversation. Forgive me if it becomes a bit, shall we say, repetitive. Ya know, blardy, blardy, nausea, blardy, nausea, blardy...It is my life right now.

When I started chemo on Monday, the PA said I'd probably have two good days, where I basically felt pretty normal. That would be due to the steroids on days one and two post-chemo. Unfortunately, I only had a half day of normal until the crud skipped in and made me jump rope.

Since then, things aren't so rosy. It's actually somewhat like that first trimester of pregnancy again. All smells make me want to hurl. Eating makes me want to hurl, not eating makes me want to hurl. Thinking about eating or not eating makes me want to hurl. Yeah, you get the picture.

So here's scoop about the next 5 months. I get to do this EVERY THREE WEEKS! Woo-hoo bring on the cheese doodles! Every three weeks I will be sitting my ass up in the oncology treatment room with about 50 others awaiting their chemo bag of fun and kicking back for the two hours it takes to receive the goodies. I just can't wait for round two. Bring it on!

Chemo runs through the end of January. 2010. That's 2010 in case you missed it just then. I will go through all the major holidays, Halloween (my bald alien costume is in the works as we speak), Thanksgiving (no stuffing for me, thanks), Christmas, (oh, cool, another hat!) and New Year's (thank God it's almost over). While I am planning on taking one day at a time, chemo seems to be pretty rough on the bod, so I might not be at work very much for the next few months. I am working with HR to get FMLA and the Kiel donation plan up and running. That should ease my stress a bit about missing so much work.

Thanks for reading. More stunning insights to come, I'm sure. : )

Started chemo on Monday and, well, it basically sucks

Everything you heard about chemo, yeah, it's true. It really does suck that bad. I've been nauseous for about a week and can't remember my own name most of the time. Feel generally like crap.

So I decided while I'm enjoying five minutes of lucidity, that I'd create a blog to keep everyone updated on treatment etc. I thought Facebook would be sufficient, but I was incorrect. I just can't keep up with it all and just really want to keep those that want to be informed, well, informed.