Sunday, August 31, 2008
Kaelin got her hair cut today. She didn't want to. She usually gets it trimmed. Just a little bit off the ends so it doesn't even look cut. She's never really "cut" her hair. But it was damaged and tangly and starting to look like dreadlocks! So I told the hairdresser to cut off the damaged ends so it's healthy. Um...that ended up being 9 inches! Kaelin pouted ALL DAY long. She was crushed. She was so upset that it wasn't as easy to put into her low ponytail. That pieces of it fell out of her pony. That people might think she looks "weird" when she goes back to school. I mean, this girl, who NEVER cries, and is as tough as nails, was in tears afterwards. And she flat out refused to get another inch cut off so she could donate it to locks of love. She was holding on to as much as she could. I tried so hard to talk her into it. Even offered to pay her money. She wasn't going to give up that extra inch. No how. No way. So now she's really upset with me. :( I feel really bad and I totally understand, but maybe this will teach her a lesson to take better care of it. I'm not sure how many days she went without brushing it. I warned her. I feel like a terrible mom today. Oh, and it didn't help that she started out upset with me because I scheduled her appointment for 415pm and the neighborhood picnic/BBQ started at 4! She didn't want to miss a minute.
We did have fun at the picnic though. And after awhile, she let it go and relaxed and tried to catch the water balloons launched by the water balloon slingshot and she shot some herself. We played some frisbee too and she was really upset that we didn't get a wiffle ball game going. We weren't organized, so our picnic lunch ended up being Subway and they forgot to put her sandwich in the bag, so that is what actually set off her tears. But that was the haircut that instigated that. That just sent her over the edge. Dave was a trooper and went back and got her a sandwich. We have another BBQ tomorrow. Maybe we can get a wiffle ball game in then.
We've spent the last two nights as a family together hanging out at Borders Books. Reading the newspaper, magazines, books and DAve working on his laptop. It's been nice.
NOT looking forward to chemo on Tuesday. Hoping Tuesday NEVER comes for many reasons.
Been cleaning out bookshelves and drawers and donating stuff to the Catlin Gabel rummage center and selling books to Powells. Trying to get the kids rooms in order before school starts. I'll work on my chaos once they go back to school.
Next week we are back to soccer (Rec and Middle school for Spencer), Rhythmic Gymnastics (13 hours a week), Acrobatics (1.5 hours a week), Martial Arts (1 hour a week), school and homework. Late dinners. Lots of driving back and forth, here and there. NOt sure I am ready to take this all on. But we thrive on that.
Hope you all are enjoying your weekend!!
Friday, August 29, 2008
We finished up about 12 today and I met Paris @ Starbucks and then went by myself to see a movie since the kids were hanging at Grannies. I ended up seeing "House Bunny" because it was at the right time. Not an award winner by any means. Cute, funny storyline, just not carried out very well. Most of the audience were teenage girls. It was a nice break. I've been wanting to go to the movies for several weeks now.
Tomorrow we have our Neighborhood Picnic/BBQ and then Sunday another BBQ to go to. Need to totally clean up my house and do laundry. Have chemo on Tuesday. School starts officially on Wed, along with the chaos that goes with it. Not sure how we're going to manage/juggle everything. It will be what it will be.
HOpe you all have a wonderful 3 day weekend!
Thursday, August 28, 2008
The kids are staying at Dave's mom's house while I'm in trial and having a fabulous time as always.
Wednesday night we dressed in red and walked in the "Run for the Reiman's" (the family that was renting the beach house that was hit by a plane). Unfortunately I forgot to take my camera and capture the powerful image of the sea of people wearing red. It was breathtaking and powerful. What a great community we live in. It is amazing how good people really are. If you want to donate funds, you can do so at any Wells Fargo Bank. Just ask to deposit it into "The Reiman Family Fund". Our thoughts, prayers and hearts continue to be with them as they heal and mourn. We look forward to seeing Chris back at school next week.
I hope you all enjoy your Fridays!
Wednesday, August 27, 2008
Monday, August 25, 2008
Good news -- the CA 125 is down to 30.
The blood blister, sore throat, and heartburn are likely all connected and a side effect of chemo. It is most likely the chemotherapy irritating the mucosa which is the lining tissue that goes from your mouth all the way down through your GI tract.
I prescribed 2 medications for you:
1. Prilosec for the heartburn, take this every morning.
2. Oncology mouthwash, which is a medicated numbing mouthwash to make your mouth and throat feel better. You can use it as needed.
Let me know if this is not helping.
Yeah!! normal ca125 is 35 or below! my ca125 is going down, even without the nasty, aggressive chemo agent that was discontinued due to me developing an allergy to it and having a bad reaction.
She also got me a referral for a followup with my oncologist/surgeon who performed my surgery and is not in the Kaiser system. She's one of the top in her field and the only doctor left who has been with me since the beginning. it was important i keep this contact.
I have been feeling really hit hard by the chemo lately. They say it accumulates and gets worse at it goes. My hands and feet are hurting a lot lately and they are beginning to feel really numb again (neuropathy). I've been really really really tired and wiped out. I've been getting out of breath going up one flight of our stairs (only 8 steps!). Not to mention the big blood blister I woke up with. I've never had the mouth sores before. I have no appetite and no thirst or hunger trigger. That doesn't stop me from continuing to put on weight though. I've had a sore throat and heart burn as well. I'm so tired of all of this. It's really starting to wear on me.
I've figured out that I've been doing chemo again for about 10 months. Initially, my first cycle (Aug 2007 - April 2008), was supposed to be 12 rounds but only went 11 because my neuropathy got so bad. I had from April until November 08 off of the nasty chemo, but continued infusing with one agent, the Avastin every 2 weeks still. My CA125 went up during that time and my CT Scan didn't come back so great. I started my 2nd cycle of chemo in November 08, and my oncologist switched me to the ovarian based agents, CarboTaxol. I did a couple of these, lost all of my hair and then left for Reno to seek alternative treatment for 3 weeks. I resumed the chemo when I returned from Reno, dropped the Taxol and continued the Carbo. My CA125 continued to go up and my CT scans didn't really improve. They switched me back to my original chemo, FolFox every other week, and I did that several rounds before developing an intolerance to the oxcilliplatin. They took out the oxcilliplatin and continued with the rest of the agents from the FolFox. I've done 7 rounds so far. Their goal is 12. Which puts me at mid December to finish up this cycle. I am so ready for a break. I am so over this. I am so tired of it. It's so old. But it looks like, from my CA125 going back down to the normal range, that it appears to be working. I hope my CT scan Sept. 10th supports that!!! That will be a huge relief to me.
Anyways, that's my chemo history in a nutshell (a big nutshell lol).
Thanks for all of the love and support and for checking in on me here. I know so many people read my blog and don't comment and that's ok! I'm just touched you take the time to even read my ramblings!!!
Big Hugs going out to all...
Sunday, August 24, 2008
We had a fun filled weekend full of parties and friends. Here are a few from the swim party today
It was nice to reconnect with old classmates and meet some new ones too!
Dave was invited to go up to Seattle with some friends for the Mariners Game vs the Athletics today and had a great time too. Due to rain, they had to close the roof of Safeco Field. They sat about 12 rows up behind home plate. The Mariners won 8-4 and there were 4 home runs hit, so it was a great game to watch.
Looking forward to my week off of chemo, but am worried about starting again next Tues, when school starts. Need to be firing on all pistons for the chaos that is about to ensue. This is actually probably our quietest week of the summer since there are no dance or gym classes this week, only soccer and martial arts. I do have jury duty on Thursday though. NOT looking forward to that! Hope to see some movies, meet friends for coffee and clean out some dressers/closets in an attempt to prepare for school.
Finally, hugs going out to my fellow cancer survivor, Eileen, who is in the hospital and to another gal from my support group, Leslie, who passed away this morning. You and yours are in my heart.
Friday, August 22, 2008
Here are some photos of Spencer working on heading the ball drills....
Here's a photo of the players at the end of camp, signing T-shirts and Balls that they had given the players, along with a ticket to a game of their choice. Spencer won one of the contests, so Kiki, the player in the front of the photo, is leaving him a ticket at will call for the game against Miami. Spencer is too "mature" (HA!) to pose for photos now, so I have to be sneaky and take them when he's not looking. Like this one with him in the background, taking his new ball out of the package. It's rare I get photos of him nowadays, so it's fun to be able to finally share some.
He really enjoyed this camp and I think he gained a lot of self confidence back during this week. Kiki had taken him aside and asked him what team he played for and if he played other sports. He told Spencer he was a good player! Spencer acted like it was no big deal, but I know he felt good about that. He had to!
You'll notice Spencer's hair is a bit long in these photos. He went and got a "big boy" haircut with my hair dresser at her salon right after camp on Thursday. Now he's sporting a short new do for the school year, complete with some gel to give the top of his hair a little spike! However, he refuses to allow me to take any photos of him and his new do! Maybe I'll get some at one of the 2 parties they are attending this weekend! I'll hide in the bushes like the paparazzi. Stalking my own kid. LOL
Tonight is Etta's memorial from 6-9pm. I hope to go if I can sneak away when my hubby or my mom get home at some point tonight. Another lady from my support group is in the hospital now too with a blood clot in her brain and some newly discovered mets (tumors) on her brain. :( I might try and go see her at St. Vincent's over the weekend.
It was super fun to see Women's Rhythmic Gymnastics on TV the last two days! That is the kind of gymnastics that Kaelin does. If you seen it, you'll see that her body type is much more condusive to that style of gymnastics than the Shawn Johnson sort. Kaelin has the same body type as all of those Rhythmic Gymnasts, tall, long, lean and flexible. Athough unfortunately I think she has my bad back, as her back isn't as flexi as theirs! If you get a chance, check it out! It's like dancing ballet with acrobatic tricks thrown in, while throwing a ball, hoop, rope, or ribbon at the same time! It's very graceful and beautiful.
I'm loving the Olympics. I'm a total addict. I can't wait for them to end so I can get some serious sleep!! Bad luck for our athletes in the Track and Field events this Olympics. And the Jaimaican, Bolt, unbelievable. He is a specimen!!! So fun to watch him run.
Enjoy your weekend! Go USA!
Thursday, August 21, 2008
Monday, August 18, 2008
This is a photo of our Women with Metastatic Stage 4 Cancer Support Group. We meet every Wednesday from 11-1230pm. This photo was taken in front of the quilt that our group made to hang in the meeting room at St. Vincent's Hospital. It was taken for an article in a newspaper about our group. Etta is the dear, sweet soul sitting in the wheel chair in the center front. I'm in the pink in the back and the two ladies in the blue on the back right are the moderators. My buddy Jo is standing to the left of me.
We all adored Etta, a strong Jewish woman from New York. She was part of our family. I can't believe she's gone. I'm so mad at myself. I missed group last week, which I never do, and she had come after not being there for awhile. I was feeling sorry for myself and just didn't feel up to going. I also have been meaning to send her a card and to go visit her at the new hospice place she had been moved to. I kept putting it off trying to deal with my insecurities and now it's too late. I was actually afraid to go see her. Afraid to see her so weak and frail. I had this problem with my two grandmothers too when they were in homes and not doing well. I didn't want to remember them like that. I wanted to remember them vibrant and strong and full of life and love. It hurt too much for me to see them suffering and weak. Etta was like another Grandmother to me. I thought of her like that. I have never forgiven myself for being weak and scared and afraid to see my grandmothers in that state. For not being strong enough for them. Or for Etta. I am going to miss her terribly. I can't imagine group without her. I will miss her and will be glad to know she is out of pain and in peace and that she wasn't alone when she died. She was surrounded by her loving family and friends. Goodbye my sweet friend.
I also want to send my love, prayers and support out to the Senior family, who just lost a loved one to cancer as well. My heart is with you and yours.
p.s. Spent 6 hours at Kaiser today visiting with my oncologist, getting blood tests done and infusing with my chemo program. She says she wants me to try and get through 12 rounds of this chemo program total, I just did round 7 today. Sigh. She also wants to do another CT Scan to see if taking out the Oxcilliplatin (the nasty chemo agent that I developed an allergy to and the one that is very aggressive and causes the nasty side effects) is hurting me. That will be Sept. 10th. I won't get my CA125 cancer marker blood tests back for several days. I'll keep you posted.
p.s.s. The boy in my son's class who was involved in that airplane/beach house accident in Gearheart was released from the hospital and is at home now recouping. Our thoughts and prayers are with him as he heals and his family heals. We hope his mother and sister can join him soon.
p.s.s.s This week is so busy with the Portland Timbers soccer camp for Spencer at PGE Park, soccer practice for both kids, dance and gymnastics for Kaelin, martial arts for Spencer, my support group and reading at a Write Around Portland fundraising party of one of the Board Members, and 3 parties for Kaelin to attend!!!!
I did take Spencer school supply shopping on Sunday, having to drag him kicking and screaming to do it! He needed to get a new calculator and they reccommend the TI-84, as it's the one they use in High School (next year!). It was like $150!!! And it looks so complicated! I would never be able to figure it out! It hooks up to the pc and stuff. Thank goodness I don't have to take math!!! Also had to buy him non black soled shoes for PE and a rolling backpack, as he carries his whole cubby/locker around with him! We don't usually go school shopping because my kids aren't shoppers and they can wear their summer clothes and shorts til October. We usually just buy stuff as needed. So that's a relief to have the school shopping out of the way already. I'm ahead of the game for once.
I'm such an Olympic junkie right now. A total addict. I haven't been reading cuz I've been watching the Olympics and I haven't been sleeping either! Been staying up all night watching. I can't get enough. I can't tear myself away. I can't believe how fast that Bolt guy from Jaimaica waas!!!! OMG! Blew me away. I was loving swimming and now I am loving the track and field and beach volleyball.
Hope you all have a good week full of peace and love. Remember to live each day like it's your last. Don't put things or people off. You never know, they might not be there tomorrow. Tell people how you feel now, while you can. Don't wait. Say what you mean and mean what you say. Live life to the fullest. Like there is no tomorrow. No regrets.
Thursday, August 14, 2008
Laura Rachel Allan
I met Laura in Reno while we were there for alternative therapy. We spent every day infusing together for 3 weeks. I'll never forget seeing her on the first day. She looked like she wasn't going to make it through the day. It was amazing to see her each day and see the life come back into her. By the end of our trip, as you can see from the photos, she became stronger, healthier and more alive. She regained color and vitality. She brought tears to my eyes when she'd sit there and play her guitar and sing songs to us as we were all infusing for 3 hours at a time together. She sang like an angel. It was so amazing that such a strong voice came out of such a small, weak person. It gave me so much hope and filled me with strength. It was so fun when she came in with her new wigs.
Several days ago, my friend Shanna who visited me in Reno, asked me about Laura and if I'd heard from her. I told her I had sent her a Christmas card, but hadn't heard back from her. I told her I needed to email her or something. Shanna then went and googled her and a couple of days ago informed me that she had passed in May, after a 6 month battle with Uterine cancer. Here are a few links associated with Laura and her music and life. She had a very successful music career and wrote songs for and played with some big names in the industry. Her mother, who died in a tragic car accident in 2006, was a revered professor at Cal Berkeley.
This has hit me pretty hard. This disease is so unpredictable and stealth and one week the patients are fine and the next week, they're gone. I've seen this happen with the ladies in my support group time and time again. It breaks my heart. And it scares the daylights out of me. I'm tired of losing people to this nasty disease. I don't want to be lost either. It's so hard to watch without thinking of yourself and wondering when your time will come. If you'll know. If you'll be ready to let go. Why did she live only 6 months after diagnosis? Why am I still here 2 years later after mine? How long do I really have? It just stirs up so much emotional stuff. Which never goes away. It's always there. Lurking. The doubt. The fear. The pain. It sucks ya know?
Anyways, I didn't mean for this post to be a woe is me, but more of a tribute to my dear friend Laura who I just learned passed in May. I love the inscription she wrote on her CD she gave me while in Reno. It reads "for my Shauna...my wig buddy and IV drip line Bag Bud. I love you all at once and feel so close to you." She autographed it and wrote the date, 02-08-08. That was one day before we left to fly home. She made my Reno experience so special and magical and soulful.
I will miss her presence in this world and want to thank her for walking in this world with me. She was a warrior and she never gave up fighting. Goodbye my friend. I'll see you again someday and can't wait to sit at your feet and listen to you sing...
Monday, August 11, 2008
I am so grateful that my kids were able to spend the weekend at my in-laws because I so so so needed a break from them!!! It seems we have spent so much time together this summer and that they are at that age where they are either bickering, tattling on each other or having so much fun together they are wild banchies running through my house! And if you've ever been to my house, the layout is such that it is just one big room! It's impossible to even escape inside your head sometimes! It was so nice not to have to feed, nag, referee, tell them to go to bed, etc! And my house stayed clean and picked up while they were gone! It was a treat! We spent some time at the dog parks and the book store and I actually spent a lot of time just sitting on the couch in the peace and quiet and reading magazines, newspapers, folding laundry and watching the Olympics.
Actually, speaking of the Olympics, how much fun was it to see the USA take that 400m relay? I stayed up much too late last night watching the women's volleyball. My mom reminded me that when I was about Kaelin's age, she couldn't drag me away from the Olympics on TV. And that she'd find me out in the yard or driveway jumping over trash cans. Must have been the hurdler or highjumper in me! Dave has been lacking sleep too due to the Olympics. He had to watch the men's basketball of course.
A shout out to the Murray Hill, Beaverton Little League team who represented Oregon at the Regionals in San Bernidino California! What a run they had before losing to the Mill Creek, Washington team in the finals. It was on ESPN and was fun to watch, even if the game televised before it went into extra innings and we didn't get to really "see" the game until the 6th inning! We are so proud of them and what a great experience that was for them! Wow!!! Way to go guys! You ROCK!
Not much else to report around here. It's back to soccer for both kids, Spencer is doing martial arts and Kaelin is still doing elite acrobatics and rhythmic gymnastics. Looking forward to my week off of chemo and an open upcoming weekend again, with nothing on the docket! Thinking about maybe heading out for a day at the beach before school starts.
I still have yet to tackle the mess I made in my living room when I was cleaning out cupboards and going through boxes of scrapbooking/cardmaking/craft supplies, paperwork and momentos. I just don't want to deal with it, so I don't. I run away and go to movies, read books and meet friends for coffee instead. It's time I deal. All the things I had on my to do list for the summer are still there. Unfinished as usual. I just don't want to spend my weeks off of chemo doing that. Ugh. Chemo Mondays come so quickly and off chemo weeks go so fast. I'm getting so darn tired of it. It's so freaking old I tell ya! I just want my life back. I want some sense of normal. This just doesn't feel normal to me. It's like I don't recognize my life or myself anymore! Anyways, that's all the whining I'm going to do about that.
I do have jury duty coming up August 23rd. I tried to get out of it, but only got it postponed because it was scheduled for a chemo week last time. Hopefully that will be short and sweet and it won't be long and dragged out because I definately don't want to spend my off chemo week in trial ya know?
Ok, off to enjoy the rest of my day before my kiddos are returned to me. Probably should think about groceries and dinner and stuff like that. It was fun feeling like a bachelorette for a few days, reminded me of the peace and quiet and time to myself I had in Reno when I spent 3 weeks there doing alternative therapy in Jan/Feb. A girl could really get used to that ya know? Love my kids and miss them, but time to myself was a luxery!
Have a great week!
p.s. it feels weird not having any photos to post.
Friday, August 8, 2008
What a fun night we spent at PGE Park, sitting in a suite with good friends, and watching the Portland Timbers play the Seattle Sounders in soccer. It was a beautiful night and we enjoyed ourselves thoroughly. Just what we all needed after a hard, stressful week full of chemo, The Hoop being sold to the YMCA and the plane crash in Gearhart affecting our school community. Our hearts and prayers go out to the Reimann family.
Congrats to the Murray Hill Little League team representing Oregon at Regionals in San Bernidino, CA! They won their semi final game tonight and play Washington in the finals Saturday night (6 or 630pm game?). Tune into ESPN, it's going to be televised! The Pacific NW is representing!!! Our neighbor Scott Zanon is the coach and his son Jacob is on the team. Three girls on Kaelin's soccer team have brothers on the team so The Red Magic Soccer team is excited and cheering them on! Go Murray Hill!
Tuesday, August 5, 2008
Sunday, August 3, 2008
August 2, 2008 Mud Mountain Dam Park, Buckley, WA (55 degrees!!!)
The reunion organizer and matriarch of the family, Grampa Crow
The Wilkinson Sisters
The Immel Family branch
We had so much fun! We played frisbee (and some of us did more chewing than catching) and we played soccer and we played baseball and we played in the fountain and some of us showed off new babies in orange like Katie with August
and Tony with Harley (although he doesn't have to change it's diapers, only the oil!)
and we ate
and we drank
and we laughed and we cried (some of us didn't want to get out of the fountain, even if it was cold!)
and we played on the playground (or sat there and pretended to be too cool to play)
and MOST of the girls got lost in their imagination in the wild flowers (well, dandelions but wild flowers sounds better!)
and they even opened a flower shop (here's a photo of their best customers!)you'll notice that one girl is missing. It's because she was too busy playing basketball
and wiffle ball (do you know how many times today she's asked us to play with her?)
and doing her new Rubiks Cube (she had to get one after her brother did)
Saturday, August 2, 2008
My brother with my kids and his daughter Ella "Enchanted"...
My cousin Chad's wife Heidi and their son Taylor...
My cousin Angie's daughter, Violet...
I hope you all have a fun filled weekend full of family and friends too! Enjoy!