Monday, December 31, 2007
Guess how I spent my day? Doing round 2 of CarboTaxol. I didn't even bring a book or anything to read. I ended up sleeping the entire time. Finally finished about 545pm. Spent a lot of time on the phone making various arrangements and unarrangements. And spent most of my time freaking out weighing the pros and cons for each decision, trying to find the one that felt the most right to me and would be ok with everyone and satisfy all the areas that needed satisfying (for my own peace of mind). The best I could do was do chemo today and postpone my trip. Don't know if it was right or not, but it's done.
My oncologist brought up some good points that I couldn't ignore. One being that when he asked how I'd been feeling, i said really good (after the standard crudiness of chemo week). So his response was, "so how do we know it's not working?" He wanted me to do another CA125 test (Cancer marker for Ovarian) but the test takes about a week to get back. He said chemo fails for a couple of reasons, one being that you mess with the schedule. So we are 4 weeks out now from my 1st round since last week was Xmas eve. And he wanted me to go every 3 weeks. We really can't measure how it's been working without the CA125. So I went ahead and took the tests and did chemo and was planning on flying out on Wednesday still but my friends and family, being the superhero support group that they are, ran around and made calls all day to postpone the plans and get refunds etc. If my CA125 comes back elevated, even after the first round, then the cancer isn't responding to it. If it comes back lowered, it's doing it's job. The Reno clinic does chemo too, but it's out of my pocket and I just don't have the funds like that to be honest. I need to use them for the big tests and stuff. Plus doing the chemo will now mess up any lab work I would have had to do at the Reno Clinic.
This CA125 will put some things into perspective for everyone and I can go with an open heart and blessings from all. (I hope). I mean, my life is at stake here, I can't mess around. I have to do everything in my power to do whatever it takes to lengthen my lifespan. Yes the chemo is nasty and destroying my immune system. But I am strong and I can bounce back, I did so after the first round. If it's destroying my immune system, it's hopefully destroying those nasty cancer cells. And I can build a thriving environment for my good cells with nutrition, exercise and rest and come back stronger and be ready, able and willing to go to Reno in about 3-4 weeks. The timing just isn't right. This happened with my Disney Trip too. And yes, it sucked at the time and I was so disappointed and discouraged and then look what happened...it couldn't have been a more perfect trip! So I believe that things happen for a reason, we just don't know what they are at the time. I'm not meant to go this week. Still not sure if I was meant to do chemo either, but it's done. Can't take that back. Not looking forward to days 4-6, that's for sure.
Thank you to all of my friends and family for supporting me and working with me on the arrangements and unarrangements. I can't even begin to tell you how much I appreciate it. I am still planning on this Reno thing, I just have a few more questions I need answered and then recover from this 2nd round of chemo and then I will be good to go. Hopefully with a little warmer weather and warmer clothes and a little more money in my pocket by then. And who knows, maybe it will work out that I can stay in one place for the entire duration instead of changing hotels several times. It all happened so fast I coudn't really catch my breath. I will be able to "sit" with it now and come up with more questions and scenarios and more knowledge.
I love you all!!!!
Thursday, December 27, 2007
To see a Dr. Forsyth at the Cancer Screening and Treatment Center of Nevada.
To hopefully get some answers. And some hope.
They are sending me a 48 page application to fill out and bring back with me. Yikes.
This has all happened so fast.
Talked to them on the phone today. They said they could get me in at 11am on Dec. 31st (Monday). That freaked me out since it's already Thursday. So she got me in at 10am on Thurs. Jan. 3rd. That gives me one week to get ready and get my family covered and my arrangements made. eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeek. I'm freaking out. (If you saw my house right now, you'd freak out too. The holidays weren't kind to it!)
I'm going to liquidate my retirement fund to help pay for it. Which is really really scary but so is cancer. Did I say eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeek yet? eeeeeeeeeeeeeeeeeeeeek!
Ok, off I go to make calls and fill out paperwork and liquidate accounts. Schedule hotels and airfare. Yikes!!!
I will try and keep you updated via the blog. Maybe my hubby will let me hijake his laptop for the road. But if you don't hear from me, don't worry. I've got my hands full with cancersuperhero boot camp. Wish me luck!!!
Love to you all!!
Wednesday, December 26, 2007
Sunday, December 23, 2007
Friday, December 21, 2007
I wore my pink/brown/ivory hat and scarf today that paris gave me at my hat shower, but my photographer/paparazzi, Kaelin is at her Grannie's house tonight, so I didn't get a photo. I will post a photo of me from the night of my hat shower and one of me and paris. But like my mom, Paris deserves a post all of her own and I don't have it in me tonight to stay up and blog it tonight. I'm wiped out after a crazy last week of school (in which my husband has been out of town for the whole time!) full of music programs, final projects, potlucks, teacher gifts, holiday shopping, working, and going to Dr. appointments on top of our usual sports etc. I've been staying up way too late and it's catching up with me. So my ode to Paris and my mom will have to wait.
Thanks for the hat and scarf Paris, and most of all, thank you for being my friend. I could never thank you enough for all that you've done. I couldn't have done this whole cancer thing without you.
This hat is from Paris' 13 year old daughter, Natalie. It's a Northface hat, very soft, warm and a great blue color that I love! I'm laughing in the next photo because when they were taking a photo of us, I bent down to get more level with Natalie instead of towering over her and then she bent down too! So we all got a giggle! Thanks for the great hat Natalie...I love it!!!!
Natalie is the same age as my son Spencer. When they were younger, they went to Farm Camp in Gaston, Oregon several summers in a row together. They are both avid readers and creative thinkers. Before Natalie retired from violin lessons (horses will do that to a girl!) they were both playing violin. They actually both have similar colorings and could probably even pass for brother and sister! Both like playing PS2 and I'll never forget Paris' 40th Birthday party where Spencer took on all the girls (even a couple of competitive dancers, one being his sister) in Dance Dance Dance Revolution and he won! I'm secretly hoping that they get married when they get older because I know that Natalie would take great care of him. Afterall, she is Paris' daughter, so it's in her genes to be a little Miss Suzie Homemaker and make fabulous meals and desserts (among other things)! And he just totally is going to need that. Sometimes I feel like he can't even tie his shoes by himself! And could you ask for better inlaws then Paris and Jim Dukes? I think not! Not sure what he's going to have to offer besides his sense of humor, taste in literature and infectious laughter but I hope I am around to see what happens.
Speaking of Natalie, we are planning on going out to lunch and a movie with her and Paris tomorrow! We're planning on seeing "The Golden Compass", which both Natalie and Spencer have already read! Thought it would be a good way to start out our winter break!
Update on Dave and the Southridge High School Girls Basketball team: They won their game today and I think they play again tomorrow. Dave said they've been busy with shoot arounds and watching game tapes. He gets home on Sunday the 23rd and then we drive up to Seattle on Christmas Eve and then drive back to Portland on Christmas night and then he has a basketball camp Wed. the 26th - Friday the 28th, 9-5pm. I think he's going to be tired!!!!
I want to thank everyone for their cards, emails, donations, well wishes, hats and support! Thank you so much for making me feel so special and loved and supported! I couldn't go to battle without all of you behind me, so thank you for making my journey more enjoyable! I've always said that I have an army behind me and it's amazing how people keep enlisting. It gives me strength! Thank you!!!!!!!!
Update on xmas prep: as I posted before, we got a head start on Christmas this year by getting our tree a couple of days after Thanksgiving, on the 25th of November. It took about a week to get it set up inside our house and then it took a few weeks before the lights were put on it. Just a few days ago (Tuesday) we started to decorate it before it got too late. We hope to finish it up this weekend. I ordered my xmas cards about the same time we got the tree and they came the next week. They are still in the boxes they were shipped in, unopened. No xmas update is written and I'm not sure I'm going to get to them for awhile. Other things keep popping up! I'll probably be my usual self and get them all out by Valentine's or St. Patrick's Day. At least you all will have more time to read our update letter then. LOL
I just started my xmas shopping a few nights ago too. And I'm struggling with my kids lists because Kaelin has asked Santa for a lap top so she can play her Runescape game and not share our computer with Spencer while he's doing his homework or with Mommy and Grannie while they're checking their emails. She doesn't want anything else and she keeps talking about how she can't wait to get her laptop. I very gently bring up the conversation about how sometimes Santa can't bring little kids those extravegant, expensive presents and her response is "I know he's going to bring me one." So what do you do with that?????? And if anyone knows of anyone selling a used laptop that would work for a child to play her online games on, please shoot me an email as I'm having no luck with people returning my emails on Craig's List.
And that brings us to Spencer's list. He wants a "Pleo". For those of you who don't know, a Pleo is some dinosaur robot pet thing. It's very lifelike and moves when you pet it etc. I'm not sure what he thinks he's going to do with it (the dog would probably just eat it) but that's all he really wants. He's even written cash on his xmas list because he's been trying to save for it and it's $350!!!! Also on his list is a Wii. Which would proably be a realistic gift that both Spencer and Kaelin could share, but #1, Kaelin doesn't want one. She wants a laptop. And #2, Wii's are no where to be found. So if anyone knows of anywhere that has gotten some secret stash in, please alert me asap!!
Kaelin would also probably be happy with a Nintendo 64, which is an old game system. Spencer used to have one but he traded it in at Game Crazy for credit to spend on XBox games and Kaelin has never let him live that down because there was one N64 game that she liked to play - Banjo Kazooie and it's only on N64. So if I could find her a used N64 and Banjo Kazooie game, that might be ok. Except #1, Kaelin wants a laptop and #2, do you know how hard it is to find a used N64? None of the game stores just have them lying around. And now I've run out of time to get one off of Ebay. It seems Christmas presents start to get so complicated as the kids get older.
Ok, so now it's 232am and I was supposed to go to bed early tonight. I guess it's earlier than 3:40am like last night.
Thursday, December 20, 2007
I met Ellen (left) and Helen when Spencer started 3rd grade at Catlin. Helen's son, Brandon, started at Catlin the same year. Ellen and her son Casey were the host family for Brandon. We had a few gatherings in the summer before the start of the year and the boys all got to know each other before school started. They became great friends and have shared many playdates, sleepovers, and many of the same interests. They formed a strings quartet and began playing together as "The Orange Oysters." (Brandon on Chello, Spencer, Casey and Gene on violin). The Orange Oysters added another violinist (Owen) and they are now a 7th grade Quintet.
Ellen and Helen have been AMAZING friends to me and my family. They have always gone above and beyond and are so positive and giving and supportive and fun. We get together for lunch, go to the movies, have girl's night out and hang out with the other Orange Oyster moms. They are always taking Spencer for playdates and sleepovers and school and violin projects. They both spoile us rotten and they have the biggest most loving hearts. I adore them both to pieces and I thank them for the stylish hat that matches my shirt so perfectly!!!
Just a quick update on Dave and the Southridge High School Girls Basketball Team in Arizona. They won their first game and play again tomorrow at 2pm!
It's another late night for me...320am. I've been staying up late (with the help of my amazing mom!) putting together goodies for my support group, co-workers and the faculty at Catlin Gabel! On top of arranging food for the 3rd grade holiday party and the 7th grade RICE (Rome/India/China/Egypt) food celebration in Cultures class.
I had asked Spencer to offer to bring something easy to the potluck, like drinks because I wasn't sure what was going on with chemo and how long I'd feel bad etc. He comes home yesterday and tells me he has his food assignment...a pyramid built out of cheese! ???? (How is that like bringing something easy like drinks???) Thank goodness my mom stepped up and helped him out and had all the cheese cubed. And thanks to Fred Meyer for their fresh fruit trays, we've got the 3rd grade party covered!
Hopefully we'll make it to school tomorrow as I've got a sick dog (TMI but he threw up in and all over my cupholder in my car!! ewwwwwww) and a sick boy (at least he made it to the bathroom before he threw up!). With my weakened immune system, I've got to be so careful of the ickies going around. Neither of my kids have gotten their flu shots yet. And with Dave out of town, I'm the caretaker of the sickies/sickos. So hopefully sleep will do us all good.
Speaking of sleep, I'm off to bed to get some myself.
Have a happy Thursday everyone!!!!
Wednesday, December 19, 2007
Saturday, December 15, 2007
I know Susie from Catlin Gabel. Our daughters are in the same grade. We initially met at a swim party during the summer before Kaelin started there in 1st grade. I remember sitting with her family afterwards outside at Peanut Butter and Ellies. They were very welcoming, kind and friendly. We all liked them very much.
Since my diagnosis, Susie has reached out to me and offered her support in many ways. Filling my inbox with kind emails cheering me on and answering questions and offering advice. Having Kaelin over for playdates. Riding scooters with Elena that summer is the reason that she ended up with two scooters for Christmas! (she wanted to keep them both so if a friend came over they could ride together. Or she could ride with her brother). It has been a blessing to me having Susie share her experiences with me. I'm so grateful and thankful and enjoy seeing her on campus, always with a hug and smile. Thanks Susie!
This is a photo of Kaelin from the gymnastics meet today. She's wearing her team sweats over her sparkly gymnastics leo and she has on her blue Ugg boots that she's had since 1st grade. It was too dark inside the gym, even with my flash, to get any good photos inside and then it was too cold outside to get any photos without her sweats on. I couldn't pass up the photo op to record my little tomboy all dolled up. It's the only time I get my girly-girl fix!
She's been so nervous about this meet all week. Even though it was a practice one! She loves to train, but she hates to compete. She gets all worked up because she's going to be judged and she can't do her routines perfectly every time (few gymnasts ever do!). It's tough when you're throwing and catching balls and hoops and ribbons while dancing and leaping and jumping and spinning and turning. She even threw a few temper tantrums before class this week, sitting on the ground in the parking lot and announcing she was quitting.
She confided in me that she was scared and nervous and that her tummy hurt. My answer to her was that it was good to get nervous and that everyone does. That getting nervous is good. It helps you to strive to do your best. It makes you try harder and perform better. I told her about Spencer and how anxious he's been this last week before his big Egypt presentation. I think that worked for her and that she understood that it was normal to feel that way. It means she cares.
Another problem she was having is that she didn't feel prepared enough. She wasn't confident in her ribbon routine. All of the other girls have been training 3 days a week, 9 hours a week in total. Kaelin plays indoor soccer on Saturdays, so she only trains 2 days a week. And since class goes from 5:30-8:30pm, and she's only 8 and that's way past her bedtime, we've been picking her up at 8pm instead of 8:30. So in actuality, she's only training 5 hours a week, versus 9. She can't expect to be perfect really. She was relieved when the coaches let her skip the ribbon routine today. That helped ease the nerves I think.
If you saw her perform, you wouldn't think that she is training 4 hours less a week than the other girls. I thought she looked great! She's a little shakey and unsteady on the balancing elements, but she looks so poised and graceful and elegant. She carries herself well. I think she's a performer. She gets out there and turns it on. You wouldn't think she was nervous at all. When she was all done, she was so relieved and I think proud of herself. She came over to me and said "look mom, I'm shaking so much" and this was after she was done!
Today was the first time that we actually had fun getting ready for a gym meet. We had some mother/daughter bonding and she was almost giddy with excitement about the day. Mentioning and talking about little things about it. We started our day off with pancakes (little did my kids know that I made them with soy milk and snuck in some ground flax seed! lol) and then I helped her shower so I could help her wash and condition her long hair so it would be easier to comb. She didn't fight me at all on anything this morning. Usually she fights me on everything and whines and cries about every little thing. The outfit. The hair. The make up. You name it. Today we left plenty of time and we took our time and we had fun. I even showed her how to apply some of her make up herself and she did that while I applied mine. This is the first time I can ever remember that we had fun getting all dolled up for a meet or dance routine. I loved it!!! And it helped to start our day out relaxed, amused and happy instead of angry, hurried and stressed. I think today was good for us both. I think she felt good about how she looked and what she was wearing too. She looked proud and confident.
I know I am so proud of her. She's an amazing little girl and carries herself with such class and confidence for her age. She works so very hard and it shows. I want to be around to see how she blossoms and changes and turns out.
Friday, December 14, 2007
I picked out this pink shirt to wear today and wondered, "hmmm...I wonder what hat I can wear with this?" I sifted through the massive pile of hats from my hat shower the other night and I found this cute, warm, fuzzy one that Jacie had made for me. I thought, "hey, I've got some purple things I can pair with this" and the rest is history! (I would have worn my white tank top underneath the pink shirt for the perfect effect but as my husband informed me today, he's been out of underwear and socks for 2 days now, so you get the picture! LOL)
In the proces of all of this, our girls became really close. They almost look like twins most of the time. They have the same coloring, body type, hair and facial features. Alaina is much more of a girly girl, and much more mellower than Kaelin, but they compliment each other well. Kaelin adores Alaina, and probably would name her as her best bud. We all traveled to Boston for Nationals together last year. Kaelin and Alaina were inseparable.
Thursday, December 13, 2007
Here's a photo of me today wearing a hat from my good neighbor Berit Kling. They are the nicest and funnest family. She's married to a very nice guy named Steve who sometimes comes over with his beer and Halo to play with my hubby Dave! They've invited us over for Super Bowl and Halloween Parties and BBQs at their house over the years. Berit has a 4th grade daughter named Haley and a 2nd ? grade son named Mason. Kaelin and Haley usually meet up on the field or the court when they get matched up against each other in soccer and basketball. Mason and Spencer love to talk video games and they often borrow games from each other. The Klings usually help host the 4th of July Block Parties and the annual neighborhood summer BBQ. Steve is famous for his balloon launcher! I think Berit and I really became close when we figured out that we both were training for the Portland Marathons with the Portland Fit Group. She's also a fellow scrapbooker and has gone to all night crops with me before!
I love my new hat and it totally matches this Nike outfit that I wore today! I can't tell you how many people stopped me today (and they didn't even know about the Hat Shower!) to tell me how cute I looked in my hat!!!! Thanks Berit!
Photos compliments of my 8 year old daughter, Kaelin!
To see all of the photos taken at the Hat Shower by Paris' daughter Natalie, go to http://jdukes.smugmug.com/gallery/3987644
Wednesday, December 12, 2007
It's 3:39am and I can't sleep. So many thoughts and feelings are running through my head and heart. I had to come write some of them down before my chemo brain forgets. I don't know what happened, but this last round of chemo has stimulated my creativity in terms of writing. I am so inspired. I know I have my friends and family to thank for it tonight. My mom and dear friend Paris threw a Hat Shower for me. You see, 14 days from the first infusion of Carbo-Taxol, cancer/chemo patients begin to lose their hair in big huge clumps. Pretty much to the day. So come Monday, I should be completely bald. I'm not sure if I buy that yet, but I do have to prepare for it in case that it does really happen. With this chemo drug, it's pretty darn certain from what I've heard. Just one time and it's gone. There's no turning back now. And with my mis-adventures in wig shopping, hats are going to become my #1 basic fashion staple.
Tonight was so special. All of those women, including my daughter and my mom, gathered in Paris' beautiful, festive, warm and loving home, celebrating me. The cancer patient. There are no words big or beautiful enough to describe what I felt and experienced tonight. All of these beautiful, amazing, special, unique, talented women that i enjoy, admire, respect and love together in one room. It was powerful. There was tea and holiday treats flowing. Candles burning. And conversation buzzing. Hugs, laughter and joy filled the air. I was at peace. Happy and content. I look around the room and see what cancer has brought me. It has brought me closer to my family, my friends, my community and myself. It has built bridges and strengthened bonds. It has given me a superpower that not many people have. "To Live Like They Were Dying." To really "see" what is important. What really matters. How special and good people are. How they have the capacity to give and love unconditionally. To cherish every moment. To make each day count. You always hear people say those words to you and you think you know what they mean and you vow to do it. But you really don't know until you're looking death in the face.
I hope that people will learn from my experience and they won't wait until that moment to really get around to doing it. Making each day count. Living like you were dying. No one knows how much time they have. Accidents happen. Accidents are just that, unplanned. They aren't scheduled and you won't see them on the calendar. You always think that it won't be you. But I'm here to tell you, that you just never know. Make the most of your time. Embrace your life. Do what you love. Love what you do. Make those connections. Deepen them. Take time for the good things in life NOW because who knows if tomorrow will come for any of us. My supercancerhero-in-training is developing this strength herself. It's something she's had to really work on to control. She has had the advantage of having "an appointment with death", as my friend Fern in my Stage 4 Metastatic Cancer Support Group says. What a powerful strength to have. To live in the moment. To live like there's no tomorrow. To embrace life. To take the opportunities and chances. To let the people you care about know exactly how you feel every single day. To not waste a single day. Time is so valuable. You can't buy it. It's in high demand. Everyone wants it. How do you want to spend the time you have? and with who?
Ok, reeling in my scattered chemo brain here. That is one of supercancerhero's weaknesses. Chemo brain. LOL
What fun to open all of the beautifully wrapped gifts and find fun, unique, different hats in each! And what fun to try them on and listen to the responses from the crowd. One hat even drew cheers and clapping! (I will save that story for when I post the photo of me in the hat) I loved every single one of them. I loved the amazing stories that came with them too. I will treasure each and every single one of them (i need to go count them!)
Paris' daughter Natalie was the paparazzi and took photos of me in each of my hats with each of my friends. My friends came from all over the city, and even the world. My friend Nic was there from New Zealand. Making a grand, show-stopping, tear-jerking entrance as only a "spongeykitty" can. (thanks for the generous gift, My Mind's Eye Cheerleader Friend and hug via Paris!)
And finally, to top off the already perfect evening, a beautiful, little hat box was passed to me, inside of which was full of donations collected from everyone near and far, to go towards a purchase of a wig, real or otherwise!
And so, the adventures of supercancerhero-in-training continue with the changing of the cape and upgrade to a hat.
p.s. go to http://jdukes.smugmug.com/gallery/3987644 to see all of the photos!
Tuesday, December 11, 2007
I promised I'd tell you about my wig adventure. Hey, that sounds like an episode for my supercancerwoman superhero series. "Adventures in Wig Shopping with Supercancerwoman; Hero in Training." Unfortunately, I don't feel like my adventure lived up to it's title.
First of all, I was feeling HORRIBLE come Friday. Paris picked me and my barf bowl up Friday at 10am. Wig shopping was the last thing I wanted to do. And Friday was the worst day for me all week. I was moving slow, talking slow and well, just plain miserable. And not because of the company (who do you know that ever feels anything but good around dear, sweet Paris?) We had it pictured in our heads that it would be fun and we'd get some good laughs, go out to coffee/tea and lunch and have just a fun girlfriends day trying on wigs and hats (is that the picture you had in your head too P?). Well, chemo day 5 post carbo-taxol was not kind to our young supercancerhero and she did not feel like coffee, tea, laughing or lunch. In fact, she had to summon all of her superhero strength to not share her lunch from the day before! And there's just something not fun about traveling with a barf bowl riding shotgun. Kinda kills the mood if you know what I mean.
The little wig boutique was charming enough. Full of cute hats and wigs all lined up on shelves on the wall, floor to ceiling. Actually, it was kind of weird sitting there with all of those eyes from the fake heads staring at you. The shop was decorated so stylish for Christmas. The receptionist was so sugary sweet. Couldn't figure out if she was wearing a wig or not. Not even sure she was real. But her hair was cute.
And so many hats. Cute trendy stylish hats. But they were all stuffed with tissue paper. And what is hat trying on etiquette anyways? Does the tissue paper mean they don't want you to try it on? Am I supposed to take it out? And having young kids, we're taught to NEVER share hats because of the lice emails and notes that always get sent home from school warning you of another case they discovered in the 3rd grade. Do I dare try on any hats? Who knows who tried them on before me. And were they bald at the time? Do bald people get lice? And who thinks this stuff anyways? Can I blame those thoughts on Chemo Brain too?
And all the heads on the wall were slim, skinny, perfect heads. I have a big fat head. The wig lady even said so. Not exactly in th0se exact words though. So all of the wigs looked good on them. Everything looks good on skinny, healthy people. And they all had names. "Jasmine", "Allison", "Jennifer". And I'm not talking about the heads. I'm talking about the hair itself. It was sort of like being in some sort of alternate dimension.
Listening to the ladies in there talk to their fake hair, referring to them by name and talking to them like they were living and breathing. Which we came to find out that they are not. They are synthetic. They don't "move". And once on my head, looked completely and utterly fake and unflattering and well, scary. For those of you who know Paris, know she would never say anything that might hurt your feelings. She would sugar coat something to make you feel like a million bucks, even if you didn't. In her eyes, you would look like a million bucks because she doesn't see whats on the surface, but whats inside. And that's what counts. But even Paris, couldn't muster up anything to sugar coat these! The best she could come up with is "I don't think that's the right color for you".
These were high quality, expensive wigs. And this boutique specializes in hair loss due to medical reasons. And my surgeon reccommended them warning me that it was pricey, but it was worth it in quality etc. I'm afraid to see what the wigs that are not so expensive look like on my big fat chemo swollen red puffy head. Because every wig I tried on looked like a dead animal on top of my head. A patch of lifeless, stiff, fake hair. She kept saying I had a full head of hair on underneath (it was in some tight stretch cap thing though) and that was making a difference. But she was wearing one too and she had a full head of hair and hers didn't look like mine.
I don't know maybe I'm not a hat/wig person. I must have the wrong shaped head or something. It looked like a patch of fake hair plopped on top of my head. I didn't even know what to say or do. I just looked in the mirror at Paris with a look that said "this is really as bad as i think it is, isn't it?" when had I been feeling better we would have been rolling on the floor laughing in hysterics and i'd be bringing the barf bowl with me for the after effects of laughing too long and hard. It was so eerie and unreal that time stood still. At least I felt like it did. I felt like I was in a bad dream, waiting for someone to pinch me awake so we could laugh about the funny dream I had. But this is real. This is my life. And it's not so funny. It's really sad. I can't wake up from it.
I expected the wigs to be expensive, and they were, $375. And did you know for $375 you get a synthetic wig that will melt when you open the oven door to get dinner out? You should have seen how big Paris' eyes got at that remark! I wished we had brought a camera and caught that one on tape! THAT was worth the whole trip right there! For those of you who don't know Paris, she is Martha Stewart, Rachel Ray, Julia Childs all rolled into one. Throw in some June Cleaver and Carol Brady and Paris is all that and more. (This is turning into my ode to Paris to thank her for being such a great friend and standing by me this whole time. I could never thank her enough, so I hope my words can make a little dent in letting her know I think the world of her and couldn't do this without her). The kitchen and cooking and baking is Paris' life. A day without the oven is like a day without air for her!
I had a vision after the comment about your bangs melting if you opened the oven door with it on. I could just see me racing around the kitchen like I always do, cooking 3 different meals at once because no one likes or eats the same things or at the same time and trying to keep everything going at the same time, without burning anything in the process after having just walked in from picking kids up at soccer, dance, gymnastics, basketball and violin lessons and it's almost 9pm! The dog is underfoot, the bird is airborn, the phone is ringing, someone's at the door, i'm trying to help my son with homework while yelling at my daughter to stop running around like a madwoman and teasing the dog! The sweet potato fries are burning because I forgot to set the timer, I throw open the door and reach in to pull them out, without thinking about the "synthetic" hair on my head. As I'm reaching into the oven with one hand to pull out the burning fries, I'm throwing the wig off and across the room with my other hand. The dog thinks it's a game of fetch. He grabs the wig and runs off all over the house like a rabid animal in what my kids call "rage mode", my kids are running after him and he thinks it's a game of keepaway. Meanwhile, I'm stuck with burnt sweet potato fries and a bald fat head. And what's worse, melted bangs or dog drool and teeth marks?
I'm thinking that maybe a synthetic wig, even in Lisa Rinna fashion just isn't for me and my lifestyle. So then the wig lady decides to bring out the big guns. The "human" hair wigs. They "move". You can open the oven door with them. They are all "hand sewn" each and every strand of them. You can add colored highlights and they are comfortable and look real. I try one on. Oh yes, this looks much better and it doesn't look so much like fake hair. This is more what I pictured in my mind. I could do this. I look at Paris for approval and I see some color come back into her face. Of course they are a bit more expensive. They (or do I call it a she?) are human hair afterall. And they (she?) don't melt. How much more expensive? $975?
To me, you might as well have said $1,000. Because it's the same thing to me. It's a lot of money to me. I never have that much money. And as soon as I get that much money, I have to pay bills that have been waiting for it. Or I need to get a new roof that's long overdue. Or paint our house that has LP siding and probably hasn't been painted since it was built in 1984. I can think of a lot of things to spend $1000 on besides real but fake hair on my head. I could put it towards a new car. We could use a newer car. I could hire someone to finally strip that wall paper in my room that has been half stripped for 8 years. I could get new carpet. A new dryer. Some new clothes that are comfortable and fit. I could take my family on a trip. I could buy a laptop to have for my long chemo days. I could hire a housekeeper to keep up with my housework. Even a nice big sparkly pair of diamond earings to draw attention away from my bald head.
I mean, $1,000, that's a lot of money. How could I EVER justify spending it on a wig? That just doesn't sit right with me. It feels irresponsible. Selfish. Vain. I mean, it's just hair right? I'm not the first or only person to go through chemo and lose their hair. It's not who I am or what I am. It doesn't change me. Only how some people will "perceive" me.
I no longer will be able to walk around as my alter ego, Shauna, pretending everything is fine and normal. I will look like a chemo/cancer patient and with that comes a lot. It's like coming out of the closet, or in this supercancerhero's case, the phone booth.
I'm not sure I'm prepared for that. Or for what my 8 year old daughter's reaction will be.
p.s. the photo is of me from Halloween - I'm bubble gum on the bottom of a shoe (stole this idea from my best friend, Joni from college!) It just seemed like an appropriate photo since I don't have any of me from my wig adventure. It was either bring the camera or the barf bowl. The barf bowl won out.
Sunday, December 9, 2007
Today I woke up not feeling so hot, but hubby popped me full of 2 vicadin and I went back to sleep. When I awoke around 11ish, all was well with the world again. I had energy. The nausea was gone. The pain. The agony. The uncomfortableness. Not completely gone, but moving in that direction. Only a fogginess remained. It snowed today. I took the dog for a walk. I played fetch with the dog. I vaccuumed. I did laundry. I cooked dinner. I did the dishes. Emptied the dishwasher. I tidied up. I helped my son with his homework and a bunch of projects. I helped my daughter make a gameboard. I had my hubby put the lights on our tree and set up our new solar lights up on our walkway. I rearranged my family room. LOL I even rearranged part of the garage and swept the leaves out! Oh, and I cleaned out my car! Can I tell you how good it feels to do those things? I loved it! It was one of those days that I didn't complain about them one bit! I even cleaned both my kids rooms - tidying, dusting and vaccuuming! Happily!!!! I paid bills. It was a good day. I want more days like that. It's nice to know that after the darkness comes light, eventually. I really wasn't sure for awhile. Oh to feel alive and normal again. Bliss.
ps. tomorrow remind me to tell you about paris' and my trip to try on wigs...
Saturday, December 8, 2007
Thursday, December 6, 2007
"He said I was in my early 40's,With a lot of life before me, And a moment came that stopped me on a dime.I spent most of the next days, lookin' at the x-rays,Talkin' 'bout the options and talkin' 'bout sweet time.Asked him when it sank in, that this might really be the real end.How's it hit ya, when you get that kind of news.Man what ya do.And he says,[Chorus]I went sky divin', I went rocky mountain climbin', I went 2.7 seconds on a bull name Fu Manchu.And I loved deeper, And I spoke sweeter, And I gave forgiveness I've been denying, And he said someday I hope you get the chance,To live like you were dyin'.He said I was finally the husband, That most the time I wasn't.And I became a friend a friend would like to have.And all the sudden goin' fishing, Wasn't such an imposition.And I went three times that year I lost my dad.Well I finally read the good book,And I took a good long hard look at what I'd doIf I could do it all again.And then.[Chorus]Like tomorrow was a gift and you've got eternityTo think about what you do with it,What could you do with it, what canI do with with it, what would I do with it.[Chorus]Sky divin', I went rocky mountain climbin', I went 2.7 seconds on a bull name Fu Manchu.And I loved deeper, And I spoke sweeter, And I watched an eagle as it was flyin'.And he said someday I hope you get the chance,To live like you were dyin'.To live like you were dyin'.To live like you were dyin'.To live like you were dyin'.To live like you were dyin'."
Day 3, Cycle 1 Carbo-Taxol
I had a busy day. Got up, showered, did my hair and makeup (gotta enjoy it while it lasts, right?) and had my mom drop me off at my Stage 4 Women with Metastatic Cancer support group to check in with all of them. I think they were glad and releived to see me. I got lots of hugs! It felt good to see all of them. I miss them and wonder how they are all doing. I worry about them too! Went to New Seasons and had lunch and grab some groceries. Then hit Powells Books and Borders Books to pick up the 3 newests Naruta Mangas that just came out. Made my kids day! Spencer had them read before he even got out of the car on the way home! Stopped at the bird store and got Bird food too. So I was out and about from about 1030-4pm and doing well. Experiencing tingling in my hands and feet, especially when I'm lying down. Am very red and flushed. Am having a lot of pressure in my pelvis, similar to that childbirth feeling. Like something is sitting on the floor of my pelvis. Not real comfy. Don't know if it's my intestines or what? So making it hard for me to sleep and relax, thus here I am at 129am. LOL Dave picked up Kaelin from school, took her to her Nike Fit Testing and she got to pick out a pair of basketball shoes for free when she was done, which she needed for her basketball practices that just started and now I don't have to buy her a pair! My good friend Jacie drove her to and from her Acrobatics Dance class, which was a huge help. Thank goodness for friends and family and the support of the community. I appreciate it so much! I've been getting cards from my local Metroscrappers (online scrapbook group from area), letting me know they are there for me, thinking about me etc. My mom and best friend Paris are throwing a "Hat Shower" and tea party for me on Tuesday. It's amazing how much good can come out of something so bad. Friday I go wig shopping with Paris and hopefully I'll feel up to it. My history with chemo from the first time around was that I would be out cold for Thursday and Friday after infusing Mon-Wed. So I'm not sure what to expect this time. I'm taking my antinausea meds etc. and they seem to be working. I'm not having any trouble with food going down and staying down. Biggest complaint is the pressure in my pelvis floor right now. Very uncomfortable! My puppy, Simba, keeps me company on the bed when I rest. He's such a sweet, loving dog. And a good snuggler! Haven't gotten to my Christmas cards like I had hoped. Have lots of books to read. But when? Tomorrow I hope to stay home and rest all day so I can have some energy for Friday. Saturday we have soccer games and maybe a team parent party minus the kids and a dance recital - the Nutcracker, put on my Kaelin's Dance Academy. She's not performing this year. But it's still fun to watch. It's very professional! Sunday brings basketball practice. So I'm hoping I'm good to go by Saturday am! Don't want to miss a thing! Ever! Well, I apologize for my rambling posts in the wee hours of the morning. Blame it on drugs and chemo brain. I'll try and get better about this posting stuff. Love to you all. Thanks for all of the love and support and friendship and generosity and caring. I am so lucky. I really am.
Tuesday, December 4, 2007
Today I had a Chemo Sobby day. First of all, I have to tell you that going to chemo today was the last thing that I wanted to do today. Or ever for that matter. I just couldn't put my heart and soul into it and go in guns ablazing and cape waving, wearing my smiley face like I had always done in the past. I was without my chemo battle armor. My game gear. My kryptonite. I actually went into work last night at 10pm to finish up a project and considered pulling a Marie Osmand and just driving down I-5 and disappearing for awhile. But the horrible storm made for terrible driving conditions and the lack of funds in my checking account to get a hotel and pay for skyrocketing gas prices and food, knocked some sense into me. This decision to do chemo has been haunting me. So much harder to accept, acknoweledge and attack with my full self as the first time around. I guess it's because now I kind of know what to expect. Although the side effects could be different. I've been through it before, so I'm depleted physcially, emotionally and mentally. Along with my support system. It's like getting the wind knocked out of you. Again. Just when we caught our breath and found a new normal that was working for us.
I'm afraid. I'm scared to death. I have to pull myself out of my pretend world where I was for the last 3 months pretending that I was someone normal again and I really didn't have cancer and accept that I do and it's back and I have to deal with it. Scared of making the wrong decision to do it. Should I try alternative stuff only to save the toll on my body and the risk of affecting my quality of life? Can I really take that chance? I have 2 kids that need me. I want to live as long as I can to see them through as much of their life's journey as I can. What would give me the better odds of that? Is there a happy medium between the two? Eradicate the cancer cells in there that we know are there with chemo asap, and then rebuild and nourish and supplement with the alternatives suff? But then with all of the chemo cocktail drugs and premeds and anti- constipation, anti-anxiety, anti-nausea, anti-diarreah, anti-vomiting meds and meds for pain control, there has to be a risk of mixing the supplements with them. That just seems like a lot of toxins in the body that can react with the herbs etc in the supplements. And it seems like they'd cancel each other out. I mean, you want to poison and kill the cancer cells, not give them the good stuff to become superhealthy strong cells. The whole idea of chemo is to kill the cells, and unfortunately the problem is that you kill all of the good cells that you need for health along with them. The chemo doesn't differentiate. It's hard to find a balance with that. So much to think about and consider and worry about. Too much for this overloaded chemo brain to handle.
So as you can imagine, I was a mess this morning, on the verge of tears for a lot of it. I think what really is bugging me is that with this one shot of chemo, my hair and all the hair on my body and face, will be gone in about 14 days. With this one infusion today. And it's done. I can't turn back the clock and change it. That's it. And yes, I know it's just hair. But it's a loss nonetheless. And what I find so hard, is that I'm now going to look like a cancer patient. With my first round of chemo on the folfox (5FU, oxciliplaten, avastin), my hair got thin, but I still had some and I had my eyebrows and my eyelashes etc. I could go in and distance myself and tell myself that I'm not like everyone else in there (the chemo suite/infusion room). That I look great and am doing great and that I'm not going to be like them. I'm going to beat this and go back to life as I knew it, with some positive adjustments of course. I don't want to look like a cancer patient anymore than I alreay do. Because that just means I really am one now. There will be no mistaking it. No more "oh you can't have cancer you look so good and healthy! " No more "YOU have cancer? This is the best you've ever looked!" and "you look too good to have cancer". Now what will they say? "Beauty is within", "you're still beaufiul inside". But most of all, what will my 8 year old daughter, who is brutally honest, say? Will she be afraid of me? Think I'm ugly? Afraid to touch me? She already thinks I gave our dog Rafiki (who we put down last month due to cancer complications) cancer. Will she and my son be embarrassed by me? That scares me. So as Lance Armstrong says, "it's not about the bike" in his book titled the same (great book by the way!), well, it's really not about the hair either. but it's a big part of being and feeling normal, as well as looking normal. Another loss to add to the list of what cancer robs - the safe, comfortable place of normal that we've established. Let's face it, I'll NEVER be normal again. Not the normal that I know and love anyways. And that's a scary thought.
So that takes me to my first infusion appointment. 8:30am Monday, Dec. 3: I was a fragile mess when I started. Especially since I was running on less than 4 hours of sleep. They gave me a decadron (antinausea) and benedryl IV as pre meds and I didn't react well to it. I felt like I was going to faint and I got all fuzzy and dizzy and just didn't feel right and I got very very scared and began to freak out a bit. I guess the benydryl makes you sleepy and can have those effects like panic. I think I was having a panic attack on top of it. I felt like I was standing on the edge of a cliff, looking over and that any moment I was going to fall into darkness. They gave me ativan (an antianxiety drug) and that calmed me down and the benydryl finished it's drip and I felt like I stepped away from the ledge of the cliff and the fog cleared a bit. They started the carbo and i handled that well. I slept alot. I had planned on addressing Christmas cards and doing crossword puzzles and taking care of paperwork etc. but I was so tired and they had put me in a room with a bed (if you're a new patient infusing for the first time, like I am with this type of chemo med, they put you in a private room where you get closely monitored etc. and you have a hospital bed instead of a big recliner chair in the chemo suite with everyone else). I then got the taxol and handled that as well. No more incidents or issues like with the benedryl. They are going to try something else next time. So far I am experiencing some tingling in my hands and especially my feet (naropathy), and I came home and slept for quite awhile. I've had two bouts of stomach cramping so far, but they didn't last long. I was able to eat the yummy broccoli cheese soup and sourdough bread that my friend paris brought over (we ate the delectible cookies she baked last night! and blueberry muffins for breakie! Thanks Paris!!!!) I've been drinking lots of water and my mom made me a couple of cups of the herbal tea I like. Now that she works at Stash Tea, we are spoiled! I was told that it could take a couple of days before it hits me. This is more of a gradual onset than the other chemo cocktail I experienced before. I actually feel really really good right now. I'm shocked. I'm a little leary for what's to come, but I'm good now. I'll take it!! Gotta be thankful for the little things too you know. And the big things - like all of you out there loving and supporting me, praying and thinking about me. Thank you!!!