Chemo is DONE!!!!

Ahhhhhhh. That's the big sigh of relief after being done chemo yesterday. I was expecting to feel a range of emotions but what I felt the most was "I just want to be done and get out of here". And it couldn't come soon enough. I gave the nurses hugs when I left. What an amazing group of people there are at Hemotology-Oncology Associates in Skokie. I will particularly miss Carrie, who had so many great stories of her 2 girls and who likes Halloween and crafts just as much as I do. The compassion and professionalism they all showed me was incredible. Such a magnificent group of people.

I go back there for a follow up appointment on 12/15, then follow up scans/blood tests in the middle of January to make sure the cancer is gone, and I have to go every 4-6 weeks to get my ports flushed out. My ports will remain in for at least 6 months in the event of a recurrence and if I need more treatment. I may leave the abdominal port in longer because they may be able to use it for surveillance by periodically checking abdominal fluid, assuming I can still get a draw of fluid out of it as long as scar tissue doesn't interfere.

I'm a little nervous about the waiting period until the middle of January when I'll know for sure one way or another how this thing will play out. But in the meantime, I'm determined to enjoy the holidays and traveling to see our families and friends back East. In 2 and 1/2 weeks we'll be on the road, and I can't wait. So excited. I leave you with this song parody. Enjoy your day!

Chemo's Done (to the tune of Jingle Bells)

Chemo's done, chemo's done, chemo's gone away.
Oh what fun it is to say that chemo's gone away-ay!
Chemo's done, chemo's done, chemo's gone away.
Oh what fun it is to say that chemo's gone away!

Dashing in the car, to chemotherapy,
For the past 5 months, that's where I had to be.
Now my chemo's done, that's all there is to say,
Assuming that the cancer will be gone and stay away.

Oh, chemo's done, chemo's done, chemo's gone away.
Oh what fun it is to say that chemo's gone away-ay!
Chemo's done, chemo's done, chemo's gone away.
Oh what fun it is to say that chemo's gone away!

Taxol and carbo, those were the drugs they used,
Abdomen and veins, was where they were infused.
Now it's o'er and done, and not to come alas,
For if it does I'll open up some more cans of Whoop-A$$.

Oh, chemo's done, chemo's done, chemo's gone away.
Oh what fun it is to say that chemo's gone away-ay!
Chemo's done, chemo's done, chemo's gone away.
Oh what fun it is to say that chemo's gone away!

Time flies when you're in between chemo's

Generally if I'm feeling better I notice that I'm busy enjoying life and not updating this blog. I guess that's a good thing. Although I have to say even though I was feeling better physically, I was in quite the mental/emotional funk for about 2 weeks. I had big time anxiety about all kinds of things. The outcome of this cancer, my capabilities as a mom and wife and, for that matter, a human being, life in general.

Phil's parents were with us for about 2 weeks. It's always so great to have them here and they are such a big help (as are all our guests we've been lucky to have throughout). When they left I went into almost a panic mode. We've been so used to having people stay with us for the past 4 and 1/2 months that I thought that maybe I wasn't sure if I could handle taking care of Benjamin by myself. The rational part of me said "duh, Sandy, of course you can do this", but the emotional part of me was freaking out. Of course it all turned out fine, and I was able to take care of the B-man just fine, only with somewhat limited energy.

I guess it's about time I got into a funk, thinking about my own mortality, since it hasn't happened a whole lot since my diagnosis. It feels like there's been so much bad stuff happening to people that I got swept into that downward spiral myself. And oh how easy it is to get swept in! I'm pretty sure the hells were there giving me a big push to jump right in and wallow. This happened during the Journey campaign that our church was taking part in called Living Courageously, during the week where we were supposed to listen for that "still, small voice", i.e., the Lord. The scary part for me was that I couldn't find this still, small voice and usually I can. It was a bad week. My friend Sten passed away that week, which I just wasn't expecting. I assumed he would rally and get through it like he had in the past. And then I started to question whether I would survive this cancer, and down I went, further and further into a funk. What I came out with on the other side is that only the Lord knows when my last day on this earth will be, so no sense worrying about it. I think I'm anxious about how to get through the waiting period between tests to see if I'm okay and my numbers are normal and this blasted cancer is gone for good. I guess it'll be a good lesson in trust for me. I'll let you know once I figure it out.

I've been feeling pretty normal the last 2 weeks. My energy level is still down which, according the my chemo nurse, could take months to return to normal. I'm looking forward to having my sister come out on Monday, but not looking forward to my last (yippee!) chemo treatment mostly because I'm feeling well right now and am not looking forward to feeling like dirt next week. I think what will get me through is knowing I'll see my family in a few weeks. All appendages crossed that I will be well enough to travel. We're planning on it, but you just never know. On the bright side, my coumadin levels have been stable for 2 weeks now (woohoo!), so that's looking like it's getting under control, FINALLY.

I leave you with this link to one of my favorite singer/songwriters, Cheryl Wheeler, who made a song parody to the tune of the Mexican Hat Dance. Enjoy! http://www.youtube.com/watch?v=HJaKqOzDvMQ.

Last IP Chemo Treatment Morning and Sleep Troubles

What do you get when you combine the feelings of hurting some people you care about, a good dose of steroids, and the thoughts that combine the two? No, this isn't a riddle, it's a recipe for a sleepless night. Well-deserved, I might add. Think Mary Katherine from Saturday Night Live and that's about the feeling I'm having.

I don't think I realized how tightly wound up I am about not wanting to make mistakes on certain levels. I guess I've always had this fear-of-success thing (which, in my opinion, is just fear-of-making-mistakes which masquerades in a sparkly outfit), but this is different. It sucks to hurt people emotionally. Of course I already knew that, being as I am human and have a heart and a conscience and a soul and all that, but when it happens, especially unintentionally, it just really sucks for all parties involved. I inadvertently compromised one of the very qualities about myself in which I take pride, and people got hurt, including myself. Why is it that making certain mistakes makes you feel like you want to crawl out of your own skin and go hide in someone elses? Where's the big undo button? Cntl + Z, where did you go? Please come back... I want a do-over. Ahhh, if only life were that simple I'm thinking we'd have a lot less problems. But I also guess we wouldn't be in freedom anymore, either.

I'm almost wishing I didn't know what was in store for my chemo today. Ignorance is bliss. Knowledge is power. And in the middle is the chasm, the Grand Canyon of, well, I'm not sure what of, but something. I know my worst IP week is already behind me, and what a doozy of a week that was, but I also know how I'll be feeling later today and frankly I feel like I'm being herded off to the firing line. I think I need to fast forward to the day after tomorrow when I'll be feeling quite a bit better. Still tired, but not so water-balloonish. Speaking of water balloons, I have much more respect now for how they must feel (if they had feelings, mind you. I think I'll draw a face on my water balloon next time I'm playing with one). At least they get an exhilarating ride by getting hurtled through the air on a glorious flying spree, whereas my ride ends at the chemo office. At least, if all goes well, I don't have the same "splat" outcome that they do. I remain, for all intent and purposes, intact, skin and all. Water balloons... not so much. Chalk one up for being human instead of rubber.

I've been thoroughly enjoying the wonder that is Benjamin these days. He's just so much darned fun. And I can have complete conversations with him. I'm amazed and in awe of the development of language. He uses phrases in context better than I do sometimes. He knows what he wants (blessing and curse, that one is, because they seem to change with the rapidity of Linda Blair's spinning head from The Exorcist) and can communicate it. How cool is that? I know for those of you who have moved beyond the language stage with your kid(s) that this is most likely a distant memory, but for us first-timers it's pretty cool! I've also been enjoying finally downloading the 4GB of photos I have of him from the last 6 months (you don't want to know how many GBs I have in total of him. It's embarrassing.) Now if only I can choose which ones to print. More choices. I'm not very good at making choices when under the influence of chemo brain. Wish me luck.

Thanks for being on this journey with me/us. Your prayers and support mean the world to us. Love to all, Sandy

Random Family Pics

Rough Week

Well, overall it's been a rough week. Worst nausea yet. It's been great to have Phil's parents here because I've mostly been resting alot this last week due to tiredness and nausea, so it's nice to know Benjamin's in good hands. Not looking forward to this week's chemo treatment except to know it's the last IP one I will have (woohoo!).

I've been thinking alot lately about a bunch of random things. Like the atrocities of this ugly war our country is still engaged in. When I hear about a woman being widowed not once, but twice, in the last 6 years due to this ugly war, or when I think about the kid I used to babysit who died 3 years ago in that same ugly war, it makes my cancer seem like a walk in the park. Not that I'm minimizing what I'm going through. Everyone is on his or her own journey. It's just that I have trouble seeing the grand plan when I think about the stuff I just mentioned. I know in every fiber of my being that the Lord can bring good out of anything, and I know that He doesn't will any of these things to happen. I KNOW it. But where I struggle is wishing I could see the good in MY timeframe, not the Lord's. Why so much suffering? What are we supposed to learn on our path? And why can't we see it NOW? I guess there wouldn't be much room for faith or regeneration if we could. I don't know why I have cancer. I have realized so many blessings within it, which sounds weird, but I don't know what the outcome will be. I know what I hope the outcome will be. I know what I want it to be. But who knows what the Lord's plans are? I guess I just have to do my part and take that giant leap of faith that everything will be okay.

Well, this is turning out to be a bit of a somber post. Guess it matches my somewhat somber mood. Here's hoping to a good second half of my IP chemo cycle this week. Wish me luck.

Love to all, Sandy

Halloween Pics: Mr. and Mrs. Clean and Their Dog

Happy (almost) Halloween

Here I sit after yet another sleep-challenged night. I wish I knew what was going on with me because I'm tired of feeling tired. Maybe it's the cumulative effect of the chemo, which I was warned about. I thought maybe it was the Tamiflu I was on but I've been off it for a few days now. I'm sleeping a little better than when I was on it, but not as much improvement as I'd hoped. Ah, well, all this is only temporary, right?

I spent most of last week being sick. Bad timing on my body's part to come down with the flu the same evening of my chemo day. Not only was I feeling like a bloated tick, but a bloated tick who felt like dirt. I'm glad to get the flu thing over with, mind you, well, at least one variety of flu. And all appendages are crossed that I won't get another type because of my compromised immune system. After all was said and done, though, homeopathy (Gelsemium) brought my fever down beautifully. I love homeopathy for many reasons, but for right now mostly because it doesn't seem to interact with chemo. So far Benjamin, my dad (when he was staying here. Share the love as well as share the germs), my mom (who got it after she got home) and me have gotten it. Phil has remained unscathed so far. More appendages crossed that he stays that way. And mucho thanks to everyone who helped out with Benjamin the last 2 weeks. I couldn't have done it without ya!

I wish there wasn't so much media hype about the H1N1 flu virus. I feel like it's making people make vaccination decisions based on fear rather than what's right for them. Don't get me wrong, I think there are lots of people who are helped by the vaccine, but I just wish the doctors/government/whoever weren't pushing the fear card so much. I'm tired of EVERY doctor I run into saying I HAVE to get the flu shot for me and Benjamin. No, I don't, thank you very much.

This last time with IP chemo went better than the first, but man, is it labor intensive. Basically it breaks down into 3 parts: the first week I feel lots of nausea from the cisplatin and mild bone aches from the neopogen shots (these shots stimulate my bone marrow to produce more white blood cells, or something like that), as well as extreme tiredness (that part hits around the time of the weekend), somewhat due to the steroids I take for that week which make me not sleep at night. I go in for a long fluid session 2 days after the infusion (long because they infuse potassium as well as magnesium, and the potassium takes 2 hours for it to complete the drip). The IP infusion itself isn't too bloating and I mostly pee it out in a few days. By the end of the week my abdomen is feeling a bit tender.

Week two is mostly feeling like I'm gonna explode after my IP infusion because there is already some residual fluid left over from the previous week into which they pump 2+ additional liters (think bloated tick on steroids trying to avoid any object that may impale the abdomen for fear of loud, wet explosion). Luckily the bloating only lasts until the following morning because I've spent most of the night sitting on the toilet expelling said fluid. More aches and pains from more neupogen shots, another day of fluids 2 days after the infusion, and more tiredness. At least the nausea is pretty much non-existent for this week. My abdomen is very tender by the end of the second week.

The third week is mostly a recovery week. Tender abdomen, go to the office twice for fluids and one of those days includes a doctor's visit, still lots of tiredness. Add to this three-week cycle twice a week visits to the coumadin clinic to check my INR, and I feel like I spend a lot of time shuffling between Glenbrook Hospital and the chemo office. Regular IV chemo is mostly just one bad week, and no visits to the office for fluids, so it's a lot less labor-intensive. My final chemo on December 1st will be just a regular IV infusion, so I'll have lots of recovery time in time for the holidays. Yay! Here's hoping I have the energy to enjoy them and the energy to pack for our travels. Here's also hoping my INR stays stable (which it hasn't been for about 6 weeks now so I've had Arixtra shots sprinkled in here and there) so I don't have to visit a clinic in Pennsylvania while we're traveling. Yet more appendages crossed. I think I've just now crossed more appendages than I physically have. Hmmm.

Halloween is almost upon us and I'm looking forward to carving my pumpkins tomorrow. I can't do it before then because the squirrels will eat them. Darn squirrels. Good thing they're cute to look at, otherwise they may be in trouble. We went to a Halloween party last Sunday and Benjamin was so proud to dress up in his little dalmation dog costume. He looked so cute in it. So we had a successful dry run. Hopefully he'll be up for wearing it tomorrow night. Hopefully I'll be up for wrestling him into it if he doesn't. I just have to figure out a way around all the treats he'll collect since he can't eat most of them because of his dairy allergy.

Phil and I are going to dress up as Mr. and Mrs. Clean. Easy costume, especially with the bald heads (although I have a few sprouts that shoot up taller than the rest of my stubble. It looks kinda funny). Now it's just up to me to show my bald head outside of the comforts of home and family. I just don't want to scare any of the school kids. Well, that and I don't particularly want to be looked upon as a freak. Who am I kidding? I AM a freak! I should just own it! Proudly! Fly my freak flag for all to see (the freak flag line is from one of my favorite movies The Family Stone).

Phil's parents arrived yesterday and are staying with Keith and Cindy until Tuesday morning at which point they'll move in with us to help us out during my chemo weeks. We're looking forward to having them and hopefully they'll avoid any residual germs that are lurking in our house. Time to Lysol the doorknobs, etc.

Happy Halloween! Have some fun! Love to all, Sandy

Yet Another Song Parody

The Twelve Days of Chemo
(to the tune of the Twelve Days of Christmas)

On the first day of chemo, my doctor gave to me
magnesium in my IV.

On the second day of chemo, my doctor gave to me
Anti-nausea drugs
and magnesium in my IV.

On the third day of chemo, my doctor gave to me
Doses of steroids,
Anti-nausea drugs
and magnesium in my IV.

On the fourth day of chemo, my doctor gave to me
Pac-li-tax-ol,
More steroids,
Anti-nausea drugs
and magnesium in my IV.

On the fifth day of chemo, my doctor gave to me
Carb-o-plat-in!!
Pac-li-tax-ol,
More steroids,
Anti-nausea drugs
and magnesium in my IV.

On the sixth day of chemo, my doctor gave to me
Heparin flushes,
Carb-o-plat-in!!
Pac-li-tax-ol,
More steroids,
Anti-nausea drugs
and magnesium in my IV.

On the seventh day of chemo, my doctor gave to me
IP infusions,
Heparin flushes,
Carb-o-plat-in!!
Pac-li-tax-ol,
More steroids,
Anti-nausea drugs
and magnesium in my IV.

On the eighth day of chemo, my doctor gave to me
Potassium liter,
IP infusions,
Heparin flushes,
Carb-o-plat-in!!
Pac-li-tax-ol,
More steroids,
Anti-nausea drugs
and magnesium in my IV.

On the ninth day of chemo, my doctor gave to me
CBC bloodwork,
Potassium liter,
IP infusions,
Heparin flushes,
Carb-o-plat-in!!
Pac-li-tax-ol,
More steroids,
Anti-nausea drugs
and magnesium in my IV.

On the tenth day of chemo, my doctor gave to me
Liters of fluids,
CBC bloodwork,
Potassium liter,
IP infusions,
Heparin flushes,
Carb-o-plat-in!!
Pac-li-tax-ol,
More steroids,
Anti-nausea drugs
and magnesium in my IV.

On the eleventh day of chemo, my doctor gave to me
Several bandaids,
Liters of fluids,
CBC bloodwork,
Potassium liter,
IP infusions,
Heparin flushes,
Carb-o-plat-in!!
Pac-li-tax-ol,
More steroids,
Anti-nausea drugs
and magnesium in my IV.

On the twelfth day of chemo, my doctor gave to me
Antibiotics,
Several bandaids,
Liters of fluids,
CBC bloodwork,
Potassium liter,
IP infusions,
Heparin flushes,
Carb-o-plat-in!!
Pac-li-tax-ol,
More steroids,
Anti-nausea drugs
and magnesium in my IV.

4AM Ramblings

Ahhhh, yes. Steroids. Causers of sleepless nights. Thank goodness I only had to take them last night for this coming week (well, plus tomorrow in my chemo IV bag o' tricks). This is where Ativan usually helps for the first week, but I'm past my first week now so I don't take it anymore until my next IP cisplatin infusion 2 weeks from now. So I guess one or two sleepless nights aren't the end of the world. Now if only I wouldn't wake up in a pile of surgically-induced menopausal night sweat, then all might be right with my sleeping world.

So it's 4AM and I just fixed myself a nice cinnamon raisin toast snack and hopefully will go back to bed as soon as I'm done this blog entry. I feel like I need to provide some clarity regarding my song parodies about the drugs I'm on. I think there may be some of you who maybe don't know my sense of humor. My song parodies are merely that: parodies. Jokes, ways for me to process the madness that is the pharmaceutical circus I'm currently a part of while undergoing chemo. I'm not a druggie. I think I'm the only person who actually reads the pamphlets that come stapled to the Rx package when I pick it up from the drugstore so that I can see if there are any interactions or side effects or how long to take them for or which country will break out into war next when said drug is taken (just kidding on that last part. I wanted to see if you are still with me and awake :o) In fact, I hate taking prescription drugs. But I do know that for the one week I take Ativan at night time to help me sleep, my quality of life is so much better for that week. And then I'm done. I don't smoke, I rarely drink, I don't do drugs. My main vice is sugar, and I've mostly curbed that one these days (something about the big 'C' makes sugar so much more unattractive now, although I still have my frosty coffee drinks on chemo days to help me get through). I do, however, appreciate the concern of those who may have misunderstood my relationship with my pharmaceuticals. I know it's genuine, and I appreciate that. 'Nuf said.

As for the terrible twos, I think what makes them bearable is the two-year-old's ability to turn it on and off like a finely oiled faucet. Benjamin has been a complete joy the last 2 days, with lots of 'yes, mama's' and pleases and thank you's (mostly unsolicited even!) and talking up a storm to anyone or anything that looks like they might be interested. I'm pretty sure Benjamin could carry on a meaningful conversation with the spatula from his play kitchen and he'd never notice it didn't talk back. Come to think of it, after having a mother who has been talking at/to him pretty much nonstop for the last 2 years, it's probably a welcome respite for him to talk to something that won't answer back.

Speaking of his play kitchen, he LOVES it. I got it at a garage sale this summer and have been hiding it away in the basement until his birthday. I'm pretty sure it was harder for me to keep it hidden down there than it ever would've been for Benjamin. Maybe it's ME that really loves his play kitchen. All the fun and no dish washing. Plastic hotdogs and squishy bacon. Fruit and veggies that come apart when you 'cut' them. Cantaloupe that definitely holds up better than the real one sitting on my cutting board as we speak. Benjamin has a fondness for the fake pile of spaghetti, probably because we have it for dinner as much as we do. I don't think I've met a kid since my nephew Justin who loves spaghetti as much as B does. Easy meal. Not so easy cleanup. Especially when it ends up in his ears.

So I'm off to my IP Taxol chemo infusion later this morning. My hope is that Lyn and I can finish the Outback Jack series and watch the wedding, although I'm HIGHLY disappointed that his final 3 women didn't match up with MY picks. What are you thinking with, Jack? Your Johnson, apparently. Lyn tells me he's still married to whomever he ends up choosing, and they have 2 kids, so that's a great thing. Don't tell me who he chooses, because I still don't know and I still haven't googled it. Now if only I could have that same self control with other areas of my life, I might actually get some things done!

Love to all, Sandy

Every Now and Then

Every now and then, primarily in the midst of my steroid-induced wakefulness in the middle of the night, it occurs to me that I'm in the battle for the most important fight of my life. FOR my life. Mostly I glide along thinking that this cancer is a thing of the past, but every now and then I remember that I'm still in it, and that it's not over yet (mostly when I feel like a bloated, nauseated tick after IP chemo). I think the biggest fear for me will be after chemo, waiting for the results each time I get a tumor marker test, or a CAT-scan. Maybe those of you who have gone down this road before me can tell me how to get through those in-between times.

In the interim, I've created an anacronym for my cancer: Can't Accept Nothing 'Cept Entire Remission. C.A.N.C.E.R. That's right, folks, opening up whoop-a$$ on it until it's annihilated. Gone. Kaput. I've also resorted to my morning dance, which use to be done to the words of "I'm gonna be a cancer survivor" to the more present "I AM a cancer survivor". It's not pretty. Think the John Candy twist from the scene in Uncle Buck when he's dancing with Marcy and they knock heads (except my version is minus Marcy and the head knock. And Uncle Buck, for that matter). But, hey, whatever gets you through the day, right? :o)

Mom and Dad were here for about 10 days and it was great to see them. Unfortunately they both got the rotten cold thing that's been going around our household, sometimes with fever, sometimes not. They arrived home safely, though. And my friend Lisa has been here since Friday morning and sadly we have to take her to the airport this afternoon. We got Benjamin's birthday play kitchen set up and his room reorganized and my bathroom cabinets organized, etc. I think I'll fly her out quarterly to organize my home because I can't ever seem to motivate myself enough to do it. Oh well.

This week of the IP cisplatin infusion has been much better than last time, mostly because I've been using my pharmaceuticals better. What a difference that makes. Still feeling a little nauseated, but definitely better than last time. And this week coming up is my IP Taxol infusion, after which I'll only have one IP chemo left and one IV chemo left, so I'm coming down the home stretch. We have lots of friendly people helping us out next week on the local level since we don't have anyone staying with us, so for that I'm extremely grateful. Wish me luck to get through this week. I couldn't do it without all of you.

Love to all, Sandy

Song Parody

With all due respect and hopefully not being sacriligious or anti-patriotic, I came up with this in bed last night. Please forgive me.

To the tune of God Bless America

God Bless You, Ativan

God bless you, Ativan
Drug that I love
When inside me, you guide me
through the stages of sleep I dream of.

Through stage 1 and through stage 2 and
through stage 3 and 4 and REM!!!!!
God bless you, Ativan
My round, white friend
God bless you, Ativan
My round, white friend!!!!!
_____________________________

Don't worry, I'm not turning into a druggie. I'm just using my pharmaceuticals a little better this week than the last time I was in this same week of IP chemo. And it's helping. A lot. Still have some abdominal pain and lots of bloating, but by Monday I should be okay. One day at a time, right?

Love to all, Sandy

The Verdict is In

Life has been full and busy for the last two weeks, and I've been feeling mostly okay. So... the verdict is in on IP chemo: not as bad as I thought, not as great as I hoped, but overall manageable. Why am I doing IP chemo? It is a bit more riskier (as far as potential abdominal irritation/infection and nausea) but the data suggests it's a better treatment for ovarian cancer. The goal is to get 3 of my 6 treatments done this way. My hope is to power through 3 of them so that my last treatment on December 1st will be the 1-day IV one so that I will be good to go for our travels at Christmas time. YAY! So I'm almost 2/3 of the way through chemo. After my IP infusion of Taxol next Tuesday, that is. I'll mostly feel like crud this week, but week 2 really isn't that bad except for the bloating from the actual infusion day itself.

So overall the last 2 weeks I've been feeling good. My friend Peggy was here for a week and we had a great time. She helped us out so much and she really got to bond with Benjamin. We miss her! And then my parents got here the day after she left and we all went to Linden Hills for the long Charter Day weekend. What a wonderful respite that was for us. So relaxing. We found out a little too late that Benjamin has now outgrown the pack and play (he can climb out of it) so we had to make a makeshift bed for him, with interesting results. Unfortunately Benjamin was pretty sick for most of the weekend with the fever/cold bug that's going around, but that didn't interfere with him eating most of his dairy-free birthday cupcake and opening up some presents on the 10th. Can't believe our boy is 2 already. We also celebrated the "birthday buddy" dinner before we left for Linden Hills with his birthday buddy, Aunt Cindy, and Uncle Keith, Christian and Elizabeth.

Speaking of Benjamin being 2, the terrible two's have hit with a vengeance. He is DEFINITELY doing his job as a toddler: constant testing, contantly saying 'no', constantly not listening to pretty much anyone, looking at us while he's doing something he knows he's not supposed to do, etc. What a fun stage (NOT!!!!). And he's become a bit of a picky eater. He used to eat just about everything. Now ketchup is a major food group and cured meats are his favorite. GREAT! Luckily I can still get him to eat tofu. He actually dipped his clementine oranges in ketchup yesterday while I was at chemo. The thought of it makes me want to gag. So the terrible two's adventures continue.

Soon my steroid-induced wakefulness and the accompanying weird thoughts will be part of the blog this week. My most recent thought, with all the subcutaneous injections I've been receiving, that if I was a rap singer with a Motown twist, I'd call my band Sub-Q-T and the Injections. So, the question I pose to all of you is: what would you call YOUR band, and what kind of band would it be? Just curious. That's all for now. My bed is calling me for a rest.

Love to all, Sandy

Officially Half Way Done Chemo

Well, folks, that's about as much positive spin I can muster after today. If I said the IP treatment was pleasant I'd be lying. It took me completely off guard that I wouldn't be feeling well since I've never NOT felt okay immediately after the chemo treatment (same day). They pumped 2+ liters of fluid plus Taxol into an abdominal cavity that already had fluid from irritated tissue in it. I can't breathe and I feel like I'm 9 months pregnant without 9 months to work up to it or a baby at the other end of it. Although my labor will consist of nonstop peeing for about the next 72 hours. On second thought, compared to 30 hours of labor plus a c-section, maybe it's not a bad thing. On third thought, I don't have a choice about it so I should stop crying in my proverbial beer. At least I can rationalize that it's only temporary. If only I could've rationalized that about 3 hours ago.

I had a complete meltdown into a puddle of tears when I was feeling like poop, poor Peggy hadn't had a break since this morning, and Benjamin hung onto me wanting to build train tracks and had NO patience for the fact that his mommy, who he hadn't seen all day, didn't feel well. Which sent him into a meltdown. A mommy-Benjamin meltdown. It was NOT a pretty sight. Said meltdown resulted in a phone call pleading with sobs for daddy to come home (from me, not from Benjamin) because his mother can't play with him because if she impales her abdomen on a sharp object she's certain she'll explode. Okay, well, that wasn't exactly what the gist of the conversation was, but close enough, at least in my head. So Phil came home and took Benjamin for a walk, after which Benjamin had meltdown number 2 due to hunger and overtiredness which led, after dinner, to Benjamin meltdown number 3 because daddy was at school. If I had hair to pull out Benjamin's room would be littered with it. Phil came home and snuggled with Benjamin which was just what he needed. Poor kid. It's not very often he reaches the end of his fuse like that, so we know it's legit when he does. Right now he's asleep which is a good thing for all concerned.

The only thing pleasant about my IP experience today was the visit I had with Lyn and the show (our chemo show) we're watching called Outback Jack. Lyn has already seen it (it aired a few years ago) so she knows how it ends, but I don't, SO PLEASE DON'T TELL ME (it's already taking every ounce of self-control I have not to Google the outcome). In any event, it's a good laugh and good entertainment value from the pampered princesses trying to earn their keep in the Australian outback trying to win the heart of Outback Jack, a fine specimen of an Australian rugged guy type. I'm still scratching my head as to why one character thought bringing a pink purse and wearing pink high heels was going to help her gut and cook fish. Like I said, great entertainment value. I'm thoroughly enjoying this guilty pleasure.

In reference to the title, I am, however, stoked about being officially half way through chemo. I just have to muster up the enthusiasm for another IP cycle (yes, I'm committed to doing it, just right now is NOT the time for me to be thinking about it until I either burst or pee myself into my regular self again). Next IP cycle starts on October 12th, so other than having to go in for fluids and electrolytes 3 more times and getting my coumadin levels checked at the Glenbrook clinic, I get a bit of a reprieve (side effects excluded). What I'm not looking forward to is the achiness caused by the Neupogen shots trying to grow my bone marrow which, I found out today, had been masked last week by the steroids I was on until I stopped taking them on Sunday and felt like I could barely walk by Sunday night. I won't be on any additional steroids this week (mostly so that my need for steroids doesn't turn into a chronic one, which the doctor is concerned about, and I agree), so I expect the achiness will be very prevalent. Maybe I'll be pleasantly wrong about that. There, see? There's another Pollyanna note to this blog entry.

My steroid induced wakefullness last night consisted of me thinking about all the really bad hairstyles I've had over my lifetime. Ironically this comes about when I don't have any hair. It started with the one perm I got right before I went to college in Bryn Athyn for the first time. I learned that short layered red hair and perm on Sandy do not a good combination make. Besides the fact that my dad sang the song Tomorrow from Annie upon first sight of me post-perm, I then had to go to a new college and look like I carried a dead red cat on my head for the first 2 terms.

One would think I learned my lesson, but alas, no. When I moved to Colorado my hair was completely flat due to lack of humidity. Overall I liked this, but decided to get a perm before being in a wedding back East. This perm was fabulous; soft, wavy, perfect. What wasn't so perfect was the perm I got after it too close to the first perm. Think Roseanne Rosannadanna. Think Wisconsin cheese wedge hats. Even in the low humidity environment of Colorado, two perms too close together equal disaster. I even have a photo of myself within a group of people taken at a wedding where my hair obscured the guy's face who was standing behind me. On top of a fireplace hearth. One foot higher than where I was standing. I don't think I need to say anything more. I was a wedge head.

Then I got to thinking about all the shaved around the ears, long in back mullet-like hairstyles I had like when I was in my brother's wedding. And then there was the "I don't want my hair to be shorter in back than front" directions that I gave a new hairdresser and ended up with my hair being significantly shorter in back than in the front. It was a great haircut, it just wasn't ME. The upside is that I had this haircut when I met Phil, so it couldn't have been too bad. I would love to hear some of your bad hair stories if you feel like sharing. I always think it's good fodder for a good laugh. We gotta be able to laugh at ourselves, right?

Well, that's about it for me for tonight. Love to all, Sandy

Benefit for Sandy and Phil

Friends and Loved Ones of Sandy, Phil and Benjamin

An open invitation from the Tyler Rebecca Byrd Smith Foundation to all blog readers near and far -please spread the word.

Friday night October 2, 2009 at 7:00pm we are having a benefit for Sandy and Phil. The theme of this benefit is a huge pot luck dinner with live entertainment from Solace from Glenbrook South. You bring your favorite dish and its written recipe, and a story of why you chose or what memories you might have regarding this recipe. If you can’t make it to the pot-luck, we would still like to get your special recipe. A suggested $10.00 donation/cover charge for this event, with 100% of the proceeds from this pot luck dinner going directly to Sandy and Phil.

We will be making a new cookbook that will be sold around the world to benefit the Tyler Rebecca Byrd Smith (TRBS) Foundation. For those of you that do not know about the TRBS Foundation, this was started to help Tyler in her fight against cancer. We have chosen to keep the foundation going to help families going through the challenge with life-threatening diseases.
The foundation has helped many families throughout the church and close friends thereof. TRBS foundation is a 501c3 tax deductable foundation. Any donation you make to Sandy or to the TRBS Foundation is tax deductable.

Send recipes and donations to TRBS Foundation C/O Kim and Jon Smith, 105 Park Drive, Glenview 60025. Please make all checks out to the TRBS Foundation and earmark them for either Sandy or TRBS Foundation.

Remember to tell your friends and family.

Feeling crummy on a beautiful day :(

It's absolutely gorgeous today for the bike-a-thon here in Glenview, and I'm at home because I feel like crap. I barely made it through church. Yesterday was a complete wipeout and today is a little better, but not much. I guess I just wasn't expecting the IP chemo to hit me this badly. Part of it is due to constipation (I reduced my meds for that based on regular IV chemo, not the delayed effects of IP chemo. Brilliant, I am.), part of it due to steroids (which I get a 36 hour break from), and part of it is from having all this freaking poison floating around my abdominal cavity and attempting to get absorped. Can you tell I'm feeling a little sorry for myself? I think I'm gonna go with it today.

That being said, I'm incredibly excited for my friend Peggy to come visit. I was sad to see my sis go home this morning, but I've been trying to get Peggy out to visit Chez Parker for years and it's finally here... YAY! Unfortunately her flight got delayed, then switched, so she's stuck at the airport for longer than she thought she'd be.

Benjamin ended up falling asleep on the way home from the airport this morning when Phil took Jamie, so he ended up going to the bike-a-thon with Phil in our bike trailer. Hopefully everyone there will understand since there really aren't supposed to be any pulled kind of bike trailers from a safety/crowd/inexperience riders perspective. Not much I can do with what people want to think, I guess. I'm sure he's having fun, though; he LOVES bike rides.

I'm considering going to Highland Park office tomorrow for fluids and electrolytes if I'm not feeling significantly better since the Skokie office is closed. Wish me luck and love and lots of recovery so I have the strength to do this again on Tuesday (at least it's a different drug this week, one that won't cause so much nausea and grossness, just potential neuropathy).

Now if only I could remember to keep my arms and legs inside the ride at all times. Sometimes I lose sight of that. Love to all, Sandy

Fluids and Magnesium and Steroids, oh my

Today I went back to the chemo place to get some fluids and electrolytes and some other IV stuff. My white blood cell count is really high as a result of the Neupogen injections, not because of infection, so that was to be expected. Feeling a tiny bit better today than yesterday, but still achy in my abdomen. And still peeing like a racehorse. Gotta love it!

The mood there in the public treatment room was pretty friendy. The one older woman who was there the prior time who has the same diagnosis as me (only this time it has returned a second time) was there with her daughter, as well as some other women I'm getting familiar with. It was kinda nice. Unfortunately because of being awake for a chunk of the night, I was pretty tired and had a nap, which made the fluid intake go even faster.

I had some steroid-induced wakefulness from 3-5:30am this morning, but I found in that time I had incredible clarity of thought. I thought of an ending for a children's book I've had locked in my brain now for over 9 years, as well as some additional fodder for 2 other children's books I've been working on for about 20 years, as well as some potential illustrators. So maybe steroid-induced wakefulness isn't such a bad thing after all.

After Celia and Sophia went home in the early evening, Aunt Jamie, Benjamin, Phil and I went to the train station and playground at Jackman Park where Benjamin got to see FOUR trains, as well as numerous construction vehicles at the new library site and a bunny. It doesn't get much better than THAT for a 2 year old.

We just fed Benjamin and are about to put him to bed after which we will enjoy a lovely take-out meal compliments of my sister. Hope you all have a great night!

Love to all, Sandy

Side Effects Not So Good

Well, I was hoping the side effects from IP chemo wouldn't be too bad. They're not horrible, but they are worse than I had hoped. Mostly cramps, nausea, tiredness and endless peeing, even with all the meds I'm on. I haven't tried the Ativan yet, so I think I'll do that tonight since it's also a sedative. It's mostly just an overall 'blah' feeling. Hopefully it'll end in a couple days.

So that's the update from 2735 Park Lane for tonight. Love to you all, Sandy

Baldilocks and the Three INR Levels

Today I shall treat you (well, you can decide if it's a treat or not) to a condensed version of a beloved children's story, Goldilocks and the Tree Bears. But it'll be slightly revised...

Once upon a time there was a girl named Baldilocks, aptly named because she, well, had no hair. Baldilocks would scamper on a regular basis to the Glenbrook Coumadin Clinic, where she had her blood INR levels tested.

One day she went in, and the pharmacist said "No, no, no, your INR levels are too low (1.8). Increase your Coumadin and reduce your vitamin K levels. No leafy greens. No, No, NO!" So off Baldilocks went to the pharmacy to pick up some more Coumadin.

On her next visit to the clinic, the next pharmacist said "Yes, yes, yes! Your Coumadin levels are in the therapeutic range (2.3). Let's keep you on your current Coumadin dosage and all will be well. Go forth and conquer that chemo." So Baldilocks left thinking that all was well in the INR level world.

Then Baldilocks had some intra-peritoneal chemo, for which a brand new lot of drugs were administered to her. The day after she went back to the Coumadin clinic. The pharmacist said "Oh my, oh my, oh my. Now your levels are too high (3.8) because of the steroids and anti-nausea drugs you're on. Let's lower your dosage." So off Baldilocks went, quite rejectedly, head upon which no hair grows hung low, shoulders slumped, off into the parking lot.

So onward Baldilocks plods, waiting for the day when her INR levels will be "just right" and stay that way. At least none of the pharmacists chased her out of the clinic.

The End

So that's where I stand with my INR levels. Now they're too high. Here's hoping I don't cut myself. At the very least it still gives me an excuse not to shave my legs.

But at least my CA-125 numbers are normal. Woohoo! Love to all, Sandy

IP Chemo and Chemo Numbers

Well, I started off the day feeling a bit apprehensive about my first IP chemo treatment. But then I got there and found out my CA-125 tumor marker numbers are now in the high side of the normal range. Normal! Before surgery my number was 780; after surgery when I started chemo it was 360; as of yesterday it was 20! Normal is 21 or lower. So after only 2 chemo treatments it got down to 20, so I think I can assume it will continue to go lower. Fingers and toes are crossed!

Turns out the whole IP chemo thing wasn't nearly as bad as I thought it would be. Compared to the amount of fluid I was carrying around (8 liters) post-surgery, 2 liters feels like nothing. I'm on some heavy duty anti-nausea meds, so that's helping. As well as the steroids. I've got the steroid red flush on my face and body at the moment. People might think I spent the day lying out in the sun instead of lying flat on a chemo bed.

My friend Lyn took me and stayed with me and treated me to a Panera Bread lunch. I learned the challenges of eating an Asian Sesame Chicken salad while lying flat on my back. Takes a bit of coordination, that does. Then Phil came in for a little while to visit as well. The first part was just an infusion of fluid, manitol, potassium, magnesium, etc. into my IV port. Then they fired up the IP port and added 1 liter of fluid for which I could stay somewhat upright, just a little reclined. When they added the cisplatin, I had to lie completely flat, then on my left side, then on my right side. Think roasted chicken turning on a spit. It wasn't too bad, though, it really wasn't. So assuming the side effects aren't too bad, it doesn't feel a whole lot different than normal IV chemo. Just a little bloating that will subside in a few days.

Getting my CA-125 numbers before my infusion was just the boost I needed to get through the treatment. Thanks to everyone for the prayers; please keep them coming. Team Sandy's Whoop-A$$ live strong!

Love to all,
Sandy

Chemo Day

Well, after next Tuesday, I'll be halfway through my chemo. Yippee! And if all goes well after that, and I can stay on a 3-week schedule, and can survive the $100 copays for the stupid Nupogen injections, then my last chemo should be on December 8th. The day after the day that will live in infamy. Maybe the 8th will be my own personal day that will live in infamy, but for a good reason. I hope no one thinks I'm being disrepectful of December 7th and Pearl Harbor. I would never do that. I just happen to like the phrase "a day that will live in infamy". So, if test results are good, it should be a great Christmas and hopefully we'll still be able to keep our travel plans.

Today went pretty well. Jamie and Benjamin dropped me off after which they went to the Kohl Children's Museum, which B always loves. I'm feeling a bit more nauseated this evening than usual, but I just ate a yummy dinner which seemed to help. It was the same old routine today; steroids, anti-nausea drugs, antihistimines, then the Taxol. I didn't get the Platinum drug since that's what I'm receiving into my abdomen tomorrow. I found out the reason for the many drugs I'll be on for nausea. Apparently it takes a few days for my body to absorb the 2 liters of fluid/drugs that will be infused into my abdomen, and a lot of that will be absorbed by my stomach. Thus the reason for the anti-nausea drugs which, now that I know the method behind the madness, I don't mind taking them.

Teresa and her mom picked me up and I was finished around 2:10pm (I started about 9:30, so it was a long day). My guess is that tomorrow will be just as long, although I start a bit earlier. I'm still a little anxious about it, but I think once I get it done one time I won't be so anxious about it. My friend Lyn is taking me tomorrow and staying, and Phil may pop in for a short time, so it'll be nice to have the company. Here's hoping to successful IP chemo. Bring on the whoop-a$$!!!!

Right now we're sitting on the, yes, twinkle light porch and having a nice visit. The B-man needs a bath soon, though, so I think I'll call it a night. Love to all, Sandy

The Divine Weaver

This is a poem that my mother-in-law read to me from the book she's reading entitled "Walking with the Women of the Bible". I really liked it so I thought I'd share it.

The Divine Weaver

My life is but a weaving
Between my Lord and me;
I cannot choose the colors
He worketh steadily.

Oft times He weaveth sorrow
And I, in foolish pride,
Forget that He seeth the upper,
And I the under side.

Not till the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.

The dark threads are as needful
In the Weaver's skillful hand,
As the threads of gold and silver
In the pattern He has planned.

It's About Time

We just got back from picking my sister, Jamie, up from the airport, then made some yummy tuna wraps for lunch and put the B-man down for his nap. Phil's parents leave tomorrow morning. It's been so great having them here for the last 2 weeks. They've been so helpful. Our bathroom remodel is almost complete. Cabinets are bought, old ones painted, the wall now has a color on it, and even the light fixture and towel racks have been purchased. Just a few last minute things to do before Phil's dad leaves tomorrow. And I'm now allowed to have tub baths, so I'll finally get to try out the whirlpool feature of our new tub. Woohoo! I think there's a bath in my very near future.

So I finally got there. To the angry place. It didn't last long, mind you, but I definitely got there. It happened as I was walking past our car and noticed my hairless reflection. I said to myself "this sucks, I don't want to be sick. I'm tired of all this." While externally I remained somewhat calm other than having a mad look on my face, inside I was stomping my feet and pounding my fists and jumping up and down like a 3-year old having a tantrum. Now that I think of it, I think 3-year olds have the right idea. Stomp like mad and get it out, then move forward. None of this holding it in business. So who knows? Maybe the next time I get there I WILL just go ahead and have a tantrum. I think I've earned it.

I'm trying not to be too anxious about my first intra-peritoneal chemo which starts tomorrow. Well, actually, tomorrow is more like regular chemo, but Tuesday and the following Tuesday I get the drugs put right into my abdominal cavity. As a precaution against feeling completely nauseated and useless, I'll be on a plethora of new drugs. I'm beginning to feel like a pawn in the pharmaceutical game of chess. On days 3-6 and again on days 10-16, take this injection to help your white blood cell count. On days 2 through 4 take that antiemetic to help with nausea. And if you get feeling really barfy, crack open some Ativan. A nice little pharmaceutical cocktail. And here I was, thinking my whoop-a$$ cocktail would be enough to get me through. Silly girl. Apparently I'm making up for all the medications I HAVEN'T been on my whole life. Oh, how I wish I had stock in pharmaceuticals. Lament, lament. So, please pray that I can tolerate both the IP chemo and the drugs they're giving me so I can do this at least 1 or 2 more times so I can get the best possible results from all this. At the very least, please pray for me to have patience to get through it all. And now that my INR levels are stable, the antiemetic drug they'll be giving me lowers my INR by 14%, so it's back to the yo-yo game with Coumadin.

I'm thinking about wearing my maternity shorts to my IP treatments since they'll be pumping 2 liters into my abdomen (this was my friend Peggy's idea. I think it's brilliant.) and I'll be quite distended. Who knew I'd find another use for my maternity clothes, what with having no reproductive system anymore? Go figure. I feel like I'll be walking around with a 2-liter Coke bottle strapped to my abdomen. I wonder if I jump up and down if I can hear the liquid jostle around like I used to be able to hear my nephew Justin's drinks post-quenching when he was a little kid? I just may have to try that! :o)

I've been feeling really well these past 2 weeks, so I'm glad the weather has cooperated so I could get out and enjoy it. I'm learning to make the most of the in-between chemo weeks. I'm still amazed at how tired it is running around after an almost 2-year old. And that's on a good day. With someone else to help! I don't know how I'd do it by myself, so I'm grateful to everyone who helps out. Thank you, thank you. It's very much appreciated.

I've been pretty good about not having sugar. It really does get easier to avoid it when you don't consume it on a regular basis. I do allow myself the occasional treat, mostly in the form of frosty coffee drinks (thanks again, Colin). It definitely helps me to get by. So I feel like that's one step in the right direction towards eating better. Baby steps.

I saw Dr. Beck this week and everything looks good and is healing nicely, so I don't have to see him for 2 months. My mother-in-law got to meet him and thank him for taking care of me. He also got to meet Benjamin. It was good to see him again. He's a very calming, comforting influence.

I still continue to feel amazed by all the love and support surrounding us. Thank you all for all that you've done. And keep sending some whoop-a$$ our way!

Love to all,
Sandy

8 years ago

As I sit here reflecting on 9/11, I can hardly believe 8 years have gone by. I remember being at work at GMAC, and hearing that a plane had hit the WTC while I was on my way to work, and thinking it was a commuter plane. Then the 2nd plane hit, and the Pentagon, and Schenksville, and everything that I knew to be secure about living in America went into a quickly descending spiral. I remember feeling like my secure little (in hindsight, maybe naive?) world had been ripped out from under me. We watched the 2nd tower fall on TV in front of our very eyes. Again, disbelief in what was happening.

When they closed the office early, all I remember is, in a very Dorothy from Wizard of Oz moment, that I just wanted to go home. Home. To call my family and tell them I loved them. To connect with people over the atrocity and heinousness of what had just happened. I think I sat in front of the TV for hours, just watching, just disbelieving it was even real, trying to reason in my mind of how anyone could mastermind such a plot, let alone carry it out. Or why they would even want to. How people could hate so much. Sometimes looking at life through rose-colored glasses doesn't give credence to the very real hatred that exists across the world. Maybe that's okay, now that I think about it.


I remember feeling an overwhelming feeling that I just needed to be there, to help, to offer a hand, to support. To do SOMETHING that would help me to feel less helpless. I'm thankful I got the opportunity to do that with my friend Kirsty on the weekends for 2 months following 9/11. Being able to volunteer was a life-altering experience. If I can find it, I'll post an email about that experience that I sent to my colleagues at GMAC.

So on this day of remembrance, I'm thinking not only of all the fallen, but of all of you. Friends, family, acquaintances. I'm glad to be a part of your lives, and I'm glad you're a part of mine. Here's to ya.

Love to all,
Sandy

Did You Know?

Did you know that you can have dandruff when you have a shaved head? Nope, me neither. Turns out I never had a dandruff problem until I had a shaved head. Go figure. It's like adding insult to injury. So, to any of my shaved headed/bald friends and siblings out there (Mike, Ron, Colin)... any suggestions? Do I apply cream? Lotion? I even have eyebrow dandruff. Now THAT is really adding insult to injury.

I'm also realizing I REALLY need to pay more attention to how I wash behind my ears. They're clearly in view at all times now. Not that I didn't wash them before, mind you, but now I really have to make sure I get the job done.

I'm wondering how long it will take me to NOT reach behind my head to pull my hair aside when I wash my back. There hasn't been a day yet since I shaved my head that I haven't done that. It's like having phantom hair. I always hear about people who have amputated limbs having phantom limb pain. Perhaps it's the same for hair. I'll have to ponder that one for awhile.

Now that you all know WAY too much about my showering habits, I'll stop that topic of conversation. Today Mum and I went out to do some comparison shopping for the remainder of our bathroom remodel (fixtures, cabinetry, etc.). Remodeling choices are quite overwhelming. Do we match the towel racks finish to the lighting fixture? If we paint our cabinets white, and we buy an already white cabinet, will they match? You know how awful mismatched whites can look. I never realized how much difference there was in white until I worked in a print shop. So many choices. Put that all together in a home improvement store under fluorescent lighting and it's completely overwhelming. Wish us luck.

I decided not to go to the women's weekend that our church is organizing this coming weekend. I was planning on going but after going to Milwaukee for the Brewers game this past weekend, and how much it tired me out, I just felt like I wasn't ready to be quite that far away from home just yet. So I look forward to hearing about it after the fact.

Sue and Joe arrived back late last night (YAY!). It's so good to see them. We'll enjoy their presence while they're here before they leave for good (BOO). Benjamin was quite happy to see them this morning. Well, right now some homemade cornish pasties compliments of Rebekah have my name on them. Yum yum. Have a great night everybody.

Love to all, Sandy

Dan About Town Show

I have to give a little shout out to my nephew, Dan, who has a new show starting at the end of this month on Current TV. Anyone who knows Dan knows he's a funny guy, and the promos on the website definitely show this. Click on the title above to go to the website to view the promos.

It's Been One Week Since ...

I know, I know. I'm slacking off on writing on the blog. My sister said so. If she said so, it must be true. She is, after all, my older and wiser sister. This one's for you, Jamie. Lots to report. I must confess I'm currently watching the US Open and Nadal is playing, so I'm a bit distracted, but I'll do my best. Here goes:

INR Level
I must have some incredibly stubborn blood. After one week on higher doses of Coumadin, my INR didn't budge. Not one percentage. Not one tenth of percentage. Nada. Zip. Zilch. So now I'm back on Arixtra injections for 3 days. UGH! Big time UGH! I'm so not looking forward to injections again. What I'm learning about getting the right INR number with Coumadin is one step forward, two steps back. It's hard not to get discouraged when I'm doing everything I'm supposed to be doing. No dark, leafy greens. No cranberries. Cut back on mayo. And the kicker is each time I do chemo I need to adjust my Coumadin levels yet again because the chemo drugs and/or the drugs they give me beforehand are blood thinners. So it feels like it's virtually back to square 1 every 3 weeks. Lord, please give me patience with this because I'm running out of it.

Halloween
I've been thinking about Halloween costumes for Benjamin, and then thinking about what I could be for Halloween. So I'm taking a poll and would love any input. Here are the ideas:

1) Uncle Fester. I've got the shaved head and cloak and light bulb.
2) A pirate. Aaarrrrggghhh. I've got the head coverings for it and can come up with a sword and swashbuckling clothes and eyepatch.
3) Mrs. Clean (Phil could be Mr. Clean. This idea was given to me by my brother, Ron). Just have to roll up the sleeves on my t-shirt and put on an earring. I've already got the shaved head, as does Phil.

C'mon folks, don't be shy about your input!

The Brewers Game
This Sunday was the annual Steelhead family outing to the Brewers game in Milwaukee. It was my biggest outing yet since surgery. I totally paid for it on Monday, but it was completely worth it! We started with a couple hours of tailgating. Think brats, drinks (no, I didn't imbibe because I'm on blood thinners. Stupid blood thinners), snacks, dessert, etc. Think baggo game and football throwing. It was great fun. Then we headed into the Brewers game. They were playing San Francisco. Benjamin was a champ for the whole game. I was the reason we needed to leave at the top of the 7th because I was getting tired. That being said, I'll still note that Benjamin was asleep before we got out of the parking lot. Big day for a little guy. Big day for a big gal. I took a nap when we got home, and then on Monday I was pretty useless and tired. But, again, it was totally worth it. And it was good to see some fellow Steelhead hockey wives and kids again, too. It even felt like life was somewhat normal again. Except for having no hair.

Life in General
A good time was had by all while Erik and Kim et al were here. The kids played so well together. Sometimes it was parallel play, but sometimes they actually did play together. Benjamin was a bit sad when he woke up from his nap and realized Connor and Grae were not around. Nor McGraw or Reba. Nor Kim and Erik. Talk about ripping a boy's world out from under him. He was consoled by the fact that his grandparents were arriving later that day.

That evening (Saturday) Grandma and Grandpa Parker arrived. We're all so grateful they're here. They brought with them the restored tricycle that everyone in the family has used and Benjamin LOVES it. It's about 60+ years old. They don't make bikes that last like that anymore. B is not quite tall enough for the pedals, but almost. That fact doesn't seem to bother him as he's on it every chance he can get.

So life here continues on. We're taking each day as it comes. Not much else you can do. Wow, that sounds much more Eeyore-ish than was intended. Phil's getting more and more into the school routine, and we're trying to get more into a normal routine here at home.

What do I need prayers for? That I can tolerate the IP chemo well this next round. That's the biggest thing right now. And I'm still struggling with sugar. There are a few more song parodies kicking around in my head, but I'll spare you for now.

Get out there and ENJOY LIFE! And let the small stuff roll off your back. It's not worth getting stressed over. Love to all, Sandy

Ramping up to the good part of the chemo cycle

Today was the first day I picked up Benjamin since July 8th. What a feeling (I can hear the whole Fame song in my head now). I even romped around with him at the playground. Again, what a feeling.

The last few days have been great. My last yucky feeling day, other than tiredness from being more active, was Monday. Kim and Erik (Phil's brother), Grae and Connor, and McGraw and Reba arrived late Monday night. It's been so great to see B interacting with his cousins, and with the dogs. I LOVE their dogs. If Phil and I ever get a dog, I might lobby for a Sheltie. It's been so great to have them here and they've been so helpful.


Today we went to the playground at Roosevelt Park. Erik commented that there was millions of dollars of playground equipment and what did the kids want to play on? The bleachers by the ballfields. Connor had a grand time eating the pebbles on the ballfield. Roughage at its finest. It felt so good to be out there and ALIVE.

As for the hair: it itches. Big time. And most of the stubble is still intact. Thus the itchiness. So right now I'm kinda hoping the rest of it falls out soon. And the leg/pit hair has brought in reinforcements and stands firmly entrenched for the time being. What a drag. I can't really complain, though. Complaining was earlier in the week.

There was a brief time on Monday where I was in a complete downer. I had some help from Sue and Carla during the day while Phil was at work, but after they left I had a few hours by myself with Benjamin and I had a complete meltdown because I felt like I couldn't do even the most basic of motherhood duties, like lifting him up on the changing table to change his diaper. I felt like a complete failure and collapsed into a puddle of tears when Phil got home. He gently reminded me that this was only temporary. Sometimes I lose sight of that. By the next morning I was feeling much better, thanks to the supportive Facebook comments that kept me going. So thank you all for that.


I also recently found out a kid I used to babysit (he's a grown man with kids now; I think he's around 35) got diagnosed this summer with prostate cancer. It got me thinking all Erin Brokovich-like. What are the odds we'd both get diagnosed with a reproductive cancer in the same summer? Hmmmm, I thought. Maybe there was something in the water near where they lived (I babysat full time during the summers so I spent alot of time there). Genetics shmenetics. It HAS to be environmental. That thought lasted for all of about 10 minutes before I accepted the fact that it's just coincidence. So if you could all pray for a full recovery for my friend Jeff, I'd appreciate it. To the big man upstairs, Jeff is a stellar human being and I'd appreciate it if you looked out for his health. Please.

As for what I need prayers with, I'm still struggling with healthy diet choices, so I guess prayers for self-control (and prayers that I love myself more than I love cake or cookies or sugar in general) would be a good thing.

Life is full of so many little blessings if you just know where to look. Don't forget that.

Love to all, Sandy

The INR Blues

This is for my friend Janine, the bluesiest singin' woman I know. I wrote it in my head on my way home from the Coumadin clinic, where my blood went back down to a 1.8 INR level (I'm trying to get between 2 and 3)

The INR Blues
(sing to any darn bluesy tune you want, or make one up)

I've got the INR blues,
I wish my blood would choose
its thinness level.

If it were up to me
my blood viscosity'd
be nice and stable.

One day it's up, then down
My blood's a venous clown
It makes me weary.

I go from day to day
avoiding vitamin K
so blood can settle.

My platelets plot within
so blood will never thin
It makes me boil.

When will I ever win
this war on Coumadin,
this bloody war within...
I've got the INR bluesssssssss, oh yeah!

Can't sleep

It's 5 AM on a Monday, and the regular crowd shuff... okay, so I went into Billy Joel mode for a moment. Sorry 'bout that. But it is 5AM (5:15 actually) and Joe and Sue just left and that makes me sad, even though they'll be back in a couple weeks to tie up some loose ends. What a difference their presence here has made in our lives this summer, and in Benjamin's. There's definitely going to be a void. Phil and I were talking in bed last night about how differently our summer might have looked if J and S weren't here. He probably wouldn't have been able to spend as much time at the hospital with me, as we'd have had other childcare logistical problems. So to Sue and Joe, I raise a glass, or more appropriately, a morning cup of coffee to you, to toast friendship. Here's to our friends... (raise glass, everyone).

The aches and pains from chemo were pretty predictable this time. They largely mirrored the last time. Today should be the last of the achy days, and right now it's just in my hands and feet. It's kind of cool/weird how it starts in my torso and each day works its way further down my extremities. Like I've said before, if it's working on the good cells I have to believe it's working on the cancer cells, too.

The only drag this time around is the metallic taste in my mouth (from the platinum drug they give me called Carboplatin) is much more pronounced than last chemo cycle. I'm hoping it goes away soon. Who knew that metal mouth now has another usage besides having braces (although I never experienced that one, either, since the orthodontic fairy bypassed my family... good luck for my parent's finances, that one was. That and good genetics.) Even Gatorade tastes metallic. Bummer.

I've started oozing again from the wound on my incision line. I'm pretty sure it's because my blood is getting thinner. My INR was up to 2.2 on Friday, but some of that was as a result of the chemo drugs, so I'm still on higher doses of Coumadin. The oozing is minimal at best, so I'm not too worried, just a little concerned that this may still delay intra-peritoneal chemo for the next round. Time will tell.

I'm getting more used to the hairless thing, largely because I wrote this song parody (ugh, not another song parody, I can hear y'all saying ;), to the tune of DO, A DEER from The Sound of Music:

Hair, the cov'ring on my head.
Gone, the clippers shaved it off.
Now, my head is really bald
Fuzz, it feels just like moss.

Air, flows freely overhead
Cold, I need a hat to wear
Me, I now look like Sinead
And that brings us back to
Hair, Gone, Now, Fuzz

Don't worry, I'll spare you all the other verses, which is easy since they haven't been created yet.

We had a really nice, relaxing weekend. Kirst left us on Friday :( But we had a nice, relaxing visit with Joe and Sue. Then on Saturday the Russells came over for BLTs (fresh from the garden, those tomatoes were) for dinner and we had a fire outside and s'mores fun was had by all. Have you ever melted your chocolate on top of your graham cracker before putting the marshmallow on? I highly recommend it. It's one of the benefits of having an outdoor contained fire thingy with a lid on which you can melt said chocolate. Then yesterday was church and playtime outside for Benjamin, a yummy dinner, ice cream social, and Corner Gas watching with Joe and Sue. I will always thank them for acquainting me/us with that show. It's a keeper, that one.

So now it's 5:38 AM and my bed is calling me again. Happy Monday to all of you.

Love to all, Sandy

Chemo and a Shave, Please

Oh, where to begin? I guess I'll start with yesterday's chemo treatment, then I can post pics of my, yes, now shaved, head. So, you can either skip to the bottom or read what may be a very long post of the 2 great days I've had. Your choice.

Yesterday morning I woke up pretty early and was thinking about the 15-second anxiety attacks I have been experiencing over the last week. During these attacks the face that always crops up is Benjamin's. I think it's definitely a parent/child/fear that I won't make it thing. And then I figured out that maybe it's some old, unresolved fears I had as an 11-year-old when my own dad was battling cancer. So hopefully these anxiety attacks will cease since I've voiced them. Kinda like the alligator dreams did.

The second chemo treatment was fabulous. My friend Lyn drove me and stayed with me for a couple hours. I was in the public room again (not the private) but, boy, was the mood ever different. It was like a coffee clatch, minus the coffee. A cancer clatch, if you will. I was virtually verclempt (not sure how to spell that word, so my apologies to Mike Myers). The women being treated for cancer and any family members that were accompanying them were chatty Kathy's. Much different than the somber mood of my last experience. We chatted about hair loss and wigs and food and treatments and all kinds of stuff. One person gave me a business card of a great wig fitter/maker. Another woman has the exact same cancer scenario as I do (full hysterectomy, omental tumor and some particles on diaphragm and rectum). It was cheery. There was laughter! It was exactly the kind of cancer commune I was hoping for last time.

The nurse mixed my cocktail with fewer steroids this time so I didn't get any of the reactions I got last time. Turns out it was the steroids, not the chemo drugs. Kirsty packed me a great lunch and snacks so I grazed all morning. After Lyn left I dozed for a bit, read a People magazine and played some games on my iPod Touch. I love my iPod Touch. I just have to say that. All in all it was just under 5 hours. Lyn came and got me and we got a Starbucks on the way home (thanks, Colin).

I mostly relaxed when I got home, and helped take care of Benjamin, and napped before going to the faculty party. Joe and Sue B and Kirsty babysat. We were planning on going for just one hour, but I happily partied for 3 hours! It was the perfect end to a great day.

I was on the fence about my hair until it came out in gobs in the shower yesterday, so Phil and I set the date for this morning to go to Supercuts to get it shaved off. We had one last coffee clatch (with real coffee this time, and no cancer present except for me) before school starts tomorrow, so Teresa, Rebekah, Jennica and Scott joined all of us for some morning coffee. It was a nice way to end "summer".

Then Phil and I traipsed off to Supercuts to do the deed. I was in such a positive frame of mind about it (I did have a little pity party for myself for about an hour this afternoon, so, yes, there was a little negativity after the fact). It was so freeing to get it shaved off. The women that cut our hair were so great. We started off with mushroom shave (think Moe from the 3 Stooges), then I got a Grecian shave, then a 1940s school boy shave, then a long mohawk, then a shorter mohawk, then some silly inbetween cuts, then one cupie doll curl in the front before the last long lock got shaved off. Phil had a mushroom cut and a mohawk before getting it all shaved. My mohawk was red-tipped, though, and moussed up. It was good fun. What I really realized after my head was shaved was...

...I LOOK EXACTLY LIKE MY BROTHER!!!! No kidding. Ron and I could pass for twins right now. It's kind of funny. So Ron, my fuzzy headed sibling, I now know what your head has felt like for all these years. :)

After we got it shaved we stopped by Corner Bakery to show Cindy and Kirsty our new doos (or are they dont's, since we don't have any hair? I'll have to think about that one) since they were visiting right next door to Supercuts. Then we came home and showed Benjamin. For most of the afternoon, any time I took my headwrap off, he'd say "Mama, hat on". Apparently the skinhead look is not a favorite of Benjamin's. I guess he just needs to get used to it, as do I. Phil went to school when we got home, and Kirsty took Benjamin on an outing and Celia and I played Life on the iPod Touch (see, I told you I loved it). Then while B was napping Kirsty did some great Jin Shin for an hour and a half. I'm a very blessed woman; have I mentioned that before? I started feeling a bit nauseated around dinner time so I took some medicine for it and went to lie down for awhile. Then had a nice dinner and Skype session with Jamie, Steph, Nina, my mom and Elsa. They were the first East-Coasters to see my new doo (or don't? Still thinking about that one).

So, here are the pictures as promised. Here's hoping side effects from round 2 are minimal. Two down, four to go. Wish me luck! Love to all, Sandy

The Before Shot...

Phil's Moe/Mushroom haircut:

Phil's Mohawk:

My Mushroom/Moe Cut:

My Grecian Cut:

My Good Boy Cut:

My Mohawk Cuts:

The Finished Products:

The Stylists:

Sunday morning

I was awakened this morning by Benjamin singing, at the top of his lungs, the Tomorrow song from Annie (maw-woh, maw-woh, lub-oo, maw-woh). It was one of the best sounds I've ever heard. My dad (and I think maybe Joe) taught him this song when I was in the hospital. The thing I like best about this song is that it reeks of optimism. So therefore when my son wakes up singing that song, I think it's a good sign that he, too, will be optimistic. Phil and I try to be, so maybe the apple doesn't fall far from the tree. Time will tell.

Kirsty just made us some homemade corn fritters and fruit salad. Yum!! She arrived yesterday morning and we went to the Northfield farmer's market and got some produce and partook of some roasted corn that the Northfield Pantry was selling as a fundraiser. Another yum! And right now it's lunch and she made us some homemade soups. Triple yum! So good to have friends and family around this summer.

We went to church this morning and the talk was on teamwork. It led me to think about the amazing people that make up "Team Sandy's Whoop-a$$". How each of you have enriched my life in so many ways. How each of you has bellied up to the prayer bar, put in a tall order and kept us in your prayers. We couldn't have gotten to where we are right now, to the other side of the surgery, without the quilt of teamwork that you all have provided. So for that we thank you, and will continue to thank you as "Team Sandy's Whoop-a$$" continues until and even after I've bid adieu to this wretched cancer.

Chemo starts again in 2 days, so I'm taking advantage of this beautiful weather to enjoy life, as I hope you all are.

Love to all,
Sandy

Someday, after Arixtra

Someday, after Arixtra
(sung to the tune of Somewhere Over the Rainbow)

Someday, after Arixtra
blood will thin.
Then, I'll have no injections
I'll be on Coumadin.

Someday, after Arixtra
down the road,
INR will be stable
and not on overload.

One day I'll pop a pill or three
and leave syringes, lumps and sharps behind me.
Where platelets clot, well, not so much
But at least no more needles touch
My skin, so lovely...

Someday, after Arixtra
blood will thin.
Then, I'll have no injections
I'll be on Coumadin.

Someday, after Arixtra
down the road,
INR will be stable
and not on overload.

Syringes will be never near
Once coumadin is here to stay within me.
Where happy little Sandy lives
No more injections Phil will give
Arixtra, 'bye thee.

Someday, after Arixtra
thin blood, WOW!
There'll be no more injections
Why, oh why, not now?

Injections no more!

Yay! Yippee! Yahoo! As I write this I wonder why so many exclamation words start with "Y"? Anyway, my INR is up to 2.0 so that means NO MORE INJECTIONS! I'm shouting it from the rooftop! Well, okay, not really, because if I was I'd have fallen off it by now because we have a really steep roof. But no more Arixtra. This morning in bed I was writing a song parody in my head to the tune of Somewhere Over the Rainbow. It was titled "Someday, after Arixtra". I may still put it on the blog, even though it's not applicable now. Shall I burden you with another song parody? Yes, I think I shall. That'll be my next entry.

This morning we had a follow-up visit with Dr. Loris, who is the doctor who put in my porto-cath on my upper chest. Everything looks good and I don't need to see her again until I need my port removed after chemo is successful. We then partook (is that a word?) in a fabulous decaf iced mocha at Starbucks. I heart Starbucks. I heart coffee. I heart mocha. Put 'em all together and what do you have? One happy customer.

Yesterday we had an appointment with Dr. Law (chemo doctor) and we decided to move my chemo up one week (next Tuesday) and do it IV like the last time. The intra-peritoneal chemo will be delayed until September 15th, so my abdomen has another 4 weeks to heal which makes me feel much more comfortable about putting the chemo drugs directly into my abdomen. The bad news: I'll be in my post-chemo pain days when we don't have extra help. The good news: I'll be well enough to go to the Brewers game on the 6th. So, it's a trade off, but it works out better on several counts. So onward we plod in the chemo saga. Keep the prayers coming that it works.

The other area I need prayers in is fortitude to eat right and exercise, and not to procrastinate either of these. Unfortunately I'm trying to break a sugar addiction which is always tough. I did it when I first got diagnosed and then I just got lazy again. So any prayers for that kind of thing are always welcome. I need to choose to eat right just as much as I choose to live. In fact, the two are very closely intertwined.

Celia and I just got back from seeing Julie and Julia. I loved it. All I want to do now is cook. I'm guessing Julia's book Mastering the Art of French Cooking is probably not cancer-compliant. But I can dream, right? At the very least I want to read more about Julia Child. I don't think I ever realized the door she opened to us chef-wannabe's. Meryl Streep was brilliant, as usual.

I just received in the mail some fabulous head scarves/coverings from a friend. I love the material and patterns. They arrived just in time because my hair is on the verge of falling out. I'm guessing about another 4 to 5 days based on how my scalp is hurting. That and the fact that I can easily pull out a good 5 or 6 hairs at a time when I try to. Some feelings are definitely coming up about the whole hair loss thing. I don't think it's going to be as easy for me as I thought. "Just shave it all off" I've uttered to people. "It's no big deal" is another phrase that has dripped from my lips. I'm guessing there are some tears in my immediate future when it really starts to happen. I know it's only hair, but I'm kind of attached to mine. Literally and figuratively. It's been the only part of my body that I've pretty much liked consistently my whole life. So now I have to believe I'm still me without the hair. That I'm attractive without hair. I've always had confidence issues with my appearance, so the universe has come up with yet another handy way for me to face those issues head on (no pun intended). So here I go... taking the plunge into the whole "love myself without my hair" stage of cancer. Rationally I know it's just hair. Emotionally it's a whole other ball of wax. Wish me luck!

It's time to get Benjamin down from the high chair and get him ready for a swim with daddy. I'll post the song parody later. So for now I'll say... Bon Appetit!

Love to all,
Sandy