Wednesday, May 27, 2009

Flowers, Another Treatment Day, and A Suspension, Ugh!

It's Wednesday, and this whole week is wacky and thrown off because my treatment day was Tuesday this week due to the Memorial Day holiday. By the way, I shopped for pots almost all morning Memorial Day, finally found some at Lowe's, of all places, after I'd been to all my more promising stores which had nothing, and then spent the rest of the day planting flowers while my kids swam and partied. I love days like that. Working in the yard while my kids are either working along side me or playing in the pool is about my favorite kind of family activity. Rachel stayed home and helped me plant while the rest of the family went to a picnic. I was sorry to miss the party, but I was glad to get those flowers in the pots so they didn't die. I finished up the whole job late last night after dinner and getting the little kids to bed. I do have more containers to fill, so if I get another burst of energy I might do more.
Back to treatment day, Justine took me this week while Mindy and her boys took care of Tadman. He likes going there because there are three boys to play with! Justine and I got to start a new puzzle straight out of the box, so we had lots of action turning all the pieces over and separating out the edge pieces and all that. Yes! I always wish there was more time for the puzzles--much more entertaining than magazines or television.
Since it was Tuesday, there were a lot of unfamiliar faces, both nurses, patients, and volunteers, but all were just as nice as my regulars. A nurse I'd never met before did my blood draw, and she had no problem at all--first try again! Justine joined me in the exam room for my doctor's appointment, and let me tell you, she had a very positive effect on Dr. Montgomery. He was positively charming. He offered conversation, encouragement, listened to my heart and had my lie down and examined my stomach. That's positively thorough for him. My nurse Cathy was gone, sadly at a patient's funeral, but the replacement nurse was very kind and complimentary.
Then, back to the waiting room for a little more puzzle time, then all too soon called into the chemo room for the infusion. I was treated by the head nurse of the unit, and she told Justine and I the delightful story about two hummingbird eggs laid in a nest in her yard. She is spraying the squirrels with water bottles to protect the tiny eggs. In a few weeks she'll have baby humming birds in her yard. Can you imagine how small baby humming birds will be?
The infusion went smoothly and quickly and Justine was kind enough to ask a cute girl who comes for treatment where she got her cap (Target). I must get one before my hair grows back. My treatment nurse recommended Zen Bento for lunch, so Justine and I went there and enjoyed some great stir fry with tender barbecued meat and brown rice or noodles. Delicious!
After picking Tadman up an returning to my house, my front door was wide open. Justine came in with me in case any intruders needed to be beat up, but I guess it was just an oversight, because nothing was gone and no one was in the house. Thank you Justine and Mindy for the treatment day help. I must have Justine go again. She brings out the best in my doctor!
Now for the bad news, while I was at treatment, Parker was in trouble at school. Here's the story as I've pieced it together from Parker's account that of Ms. Bernal, the 6th grade assistant principal. After break on Tuesday, Parker got to his locker to get his books for his next class only to find his locker had been broken into and vandalized. Books were torn, papers were scattered over the hall and something had been jammed into the locker to make it difficult to reopen. Parker saw Ms. Bernal in the hallway and asked for assistance getting his locker open and his possessions gathered. She helped him clean up, got things back in his locker and sent him off to class. At this point Parker told Ms. Bernal that he sometimes preset his locker combination so his locker would easily open when he came back between classes. He has a hard time getting a locker open, getting the materials he needs and getting back to class on time. So Parker went to class, and Ms. Bernal discovered from others students nearby who had vandalized the locker. When the student who trespassed and vandalized Parker's locker was brought to her office to be disciplined, he offered up some information to get a little of the heat deflected away from himself. He told Ms. Bernal that when he was going through Parker's locker and vandalizing it he had come across a knife. At that point Ms. Bernal let herself back into Parker's locker, had another look through his possessions and found at the very back of the locker under a bunch of books and papers, a small Swiss army pocket knife. She called Parker immediately to her office. He admitted it was his, although said he had no idea it was in his locker and had forgotten it was there. He hadn't showed it to anyone, talked to anyone about it, or anything like that. It was literally just thrown in the back of the locker. She told Parker that was an offense punishable by expulsion, but under the circumstances she would show leniency and suspend him for three days instead, including the last day of school. Poor Parker was devastated. He really had no idea the knife was in his locker and then he was blindsided by the punishment. Ms. Bernal wouldn't tell me what the punishment was for trespassing, vandalizing, and bullying (this same kid has done this to Parker's locker a half dozen times this year, as well as slamming his locker shut often right after Parker has opened it between classes) but assured me his punishment would be severe. Parker heard that he got one day of in-school suspension. Okay, so I understand the knife thing, because it's a district rule that is set in stone apparently that any knife at school is punishable by suspension or expulsion regardless of the circumstances, but it seems a little crazy to me that this bullying and criminal behavior is a less severe crime when the intent is to do evil in the one circumstance, and the other (Parker's crime) is just a crime of disorganization or negligence with no intent to harm or harass another student. Parker has just been bullied to death this year, called names, had chewed gum stuck in his hair, etc. etc. I can't wait to get him out of that school!
The good news is I get him home with me for a couple of days. The bad news is this is one more bad memory Parker has to punctuate a long, hard sixth grade year. I have done everything I can think of to find him an advocate at the school, talked to teachers, counselors, he's tried to get help from teachers overseeing the hallways, and nothing's worked. We're both exhausted by it. Thank goodness the year is almost over. Now one day closer to being over for Parker.
Today Parker watched Tadman for me while I went to water aerobics. I really love the class. It is an adequate workout, but relaxing and gentle on the body, and it feels more like play than a hardcore workout since it's kind of like playing in the water. Plus water is just inherently relaxing. But then a couple hours later I'm just exhausted. It's strange considering how good I feel right after I finish the class.
My sister and my dutifully came and made beds and dropped off laundry today. Tadman got an extra treat when he got to go to Walmart with them in my sister's yellow truck. He was more than excited.
I crashed in the afternoon, but somehow all the kids got to their evening activities and the little kids survived. I attempt to get Tadman to nap with me but he's impossible to get to sleep during the day anymore, but then crashes at dinnertime. Tonight he fell asleep in the tacos Kathleen Anderson provided us for dinner. But I'm not ready to give up on those afternoon naps quite yet.
In conclusion tonight I need to remember my blessings. I've really been obsessing over Parker's suspension and I'd like to try to let that go and move on to more positive thoughts. I am thankful for the beautiful weather of the past few days. It's all of a sudden summer with the long days, warmer evenings, and beautiful bright night sky. I'm thankful, of course, for the variety and color and scents of flowers and the relaxation and satisfaction I get from planting and nurturing them. I am thankful for the patience and stamina of all my helpers, many of whom have brought 2 or 3 meals now, many of whom come multiple times a week to do things for me. I'm thankful for my kids who challenge, love, and entertain me and add variety and interest to my life and make me forget I have cancer. I'm thankful for Greg who keeps plugging away at work, somehow continues to provide, and picks up a lot of extra chores he's not excited about. I'm thankful for the strength and stamina and endurance my body has in spite of this cancer treatment. It somehow keeps responding and regrouping even though I get poison pumped into it each week. With the exception of the feet which are pretty messed up. Notice I have ten treatments under my belt. Only 2 more Adria treatments and then on to Taxol!

Sunday, May 24, 2009

The Real Me During Cancer Treatment

I have a yearly tradition, usually it falls on Memorial Day weekend, to buy flowers for all my pots, plant them, and put them tastefully throughout my yard for that little burst of color. Then Greg and I are slaves to the pots for the rest of the summer because they have to be watered every day. The funny thing is how consistent this experience is from year to year. Almost every year I go to Home Depot for the flowers. I have the perception that they are cheaper there--I've never really checked around much to see if my perception is reality. Usually someone comes with me on the flower selection day--this year it was Rachel, Parker, and Kate--and every year the person or people who come with me get burned out before I'm done and end up going home, and then Greg comes and picks me up when the flower selection process is complete. Rachel drove the other kids home this year, and again Greg had to come get me later. Then, I never have enough time to plant all the flowers in one sitting, so the flower planting always ends up taking several days. There are lots of things I hate about this tradition, and yet the tradition continues. Every year I think, "Next year I'll just go by myself so I won't have to worry about my kids getting bored," or "Next year I'll buy fewer plants so I can plant them all at once," but somehow it never happens. It's tradition. Saturday was the day I did the plant shopping. I loved it, but it did take almost all day, and so far two pots have been planted and all the other flowers are patiently waiting.
So it was Sunday today and I went to church as I always do on Sunday, but I had some thoughts that came to me that I wanted to share on my blog today. I think every one's getting the wrong idea about me. People seem to have the impression that I'm strong and positive and heroic. I want to be more honest with you so you get the real picture of what I'm like. I do have some good days, some positive days, but I am mostly at the mercy of all the drugs I'm taking to combat cancer. The steroid I get with my infusion particularly takes me on a ride emotionally. I feel optimistic on treatment day and the day or 2 after, but when the steroid goes away, the optimism goes with it. On Thursdays and Fridays my mood alters drastically and those days I feel old, tired, and worthless. On those days in my mind it doesn't matter if cancer treatment works because I have so little to offer my family, my friends, or the world anyway. I cry a lot. I see life happening around me but feel very detached and separate from it. I am distant from my husband and disconnected from my kids on the down days. This feeling comes like clockwork every week, and deepens as I get further into the treatment schedule.
The side effects aren't only emotional. Besides losing my hair, which was way more traumatic than I ever thought it would be, I have mouth sores, indigestion, extreme heartburn and excess stomach acid, extremely hard bowel movements which result in a very sore bottom, a burning sensation in my hands and feet, and big sheets of skin peeling off of the bottoms of my feet. This is in addition to a strong aversion to food most days and difficulty swallowing and drinking.
All that said, hearing about other people's struggles during treatment and their more extreme reactions, I know I am very fortunate to feel as good and as strong as I do. But if there is someone else who is doing cancer treatment reading my blog, I wanted you to know I am not stronger than you are, or more optimistic. Cancer treatment is bleak. It's lonely. Get and MRI or a Pet Scan and you realize right away, you can bring a loved one with you to the appointment, but you have to leave them in the waiting room and do the test alone. To me those tests were symbolic of the entire treatment. Friends and family do all they can to help, but when it comes down to it you are alone. All you have is your own strength, your own stamina, your own will, and your own faith.
Being in the midst of treatment I don't know all the lessons I still have to learn, but here are some ways I've changed so far. Cancer has made me humble. I realize I am small and weak and insignificant in so many ways. Cancer has opened my eyes to the struggles and sorrows of the world around me. I honestly didn't recognize how many people suffered from illness and poverty and countless other afflictions until I stepped into their company. Now I will never be back where I was before even if I make a complete recovery. Cancer has made me realize how necessary the Savior is in our lives. We can't do it without Him even if we're having such a great life we don't recognize our need. It says in the scriptures that at some point every knee will bend and every tongue confess that Jesus is the Savior, and having cancer has made my knee bend like never before.
I wanted everyone to know I am not special or heroic. I talked to Joetta Stott at church today and heard that her daughter-in-law had a severe reaction to her first chemotherapy infusion and had to be hospitalized. She didn't do anything different than I did, but every person undergoing chemotherapy is at the mercy of the treatment. We just get what we get and try to keep putting one foot in front of the other until the course we've been prescribed is over. I hope that first treatment is the biggest bump in the road for her.
I appreciate the support all of you offer to me, and I am sorry if I am less responsive and creative in expressing my appreciation than I used to be. I don't mean to imply from what I've said above that your help is pointless. I love having a friend at treatment and going to lunch means less time thinking about and preparing food, which is a big help. Dinners and house cleaning takes a burden off me and gives my family a sense of routine and normalcy. Notes of encouragement and comments on my blog help me realize I am not alone and that my friends haven't grown tired of the whole ordeal. Earrings from Bethany are just a very happy and unexpected surprise! Clean and folded laundry several times a week makes living at home like living in a fine hotel! I am very grateful to my personal network of family and friends offering an endless outpouring of support. Although I am alone in treatment, I am not alone in daily life. Please know I acknowledge and appreciate everything each of you do.

Thursday, May 21, 2009

Where Did the Week Go?

Where did the week go? I meant to post Monday, Tuesday, and Wednesday, and am finally getting around to it on Thursday. It's May, you know, and there are so many "end of year" or "end of season" things going on. That's my excuse for not writing, and I'm stickin' with it.

So way, way back on Monday was treatment day as usual. Vicki Worthen was kind enough to drive me, and we were nearly on time even though the appointment was extra early. As an added bonus Vicki was able to visit Jami Griffith, who she visit teaches, over at St. Luke's while I was doing the boring stuff like getting my blood drawn. Jami has been there with an infection that's caused her to have a lot of seizures, but Vicki found her doing well when she visited.


My port was accessed on the first try again--that's becoming a total non-issue, obviously--and I was able to get right back out to my puzzle pieces. The worst part is being pulled back to see the doctor and having to wait for him in the examining room when I could be waiting happily in the big waiting room with the light, and windows, and people and puzzles. I don't like waiting in the little dark room with the three never changing magazines. But wait I did, and then the doctor came and did his minimalist routine of a grunted greeting, laptop scrutinizing, stethoscope listening, and the see you next week, but he did give me one interesting piece of information. I found out that he had ordered a reduction in the amount of chemo I received last week (which explains why my stomach felt better) and I found out that he planned on slightly increasing the dosage this week because my symptoms were better. I'm feeling that silly little extra 4 milligrams this week. My hands and feet are irritated again and my stomach is much more upset--just 4 little milligrams!


I found Vicki waiting for me when I was done, and we were soon settled in the infusion room receiving the poison that's making me better. We talked book club books and chatted with my little volunteer who gets the bagels and warm blankets. We found out more about his interesting past as an English teacher at Capital High, as a Russian language expert in the service, and about some of his favorite authors and books. (I'll have to have Vicki remind me what they were because she was smart enough to write them down.) Otherwise the infusion went just as usual, and Vicki and I were able to pick up new meds at the pharmacy and get to lunch with great efficiency.


We went to Moon's again since it was so good when I went with Karla, and this time we got the best table in place right in the bay window. Just as I was telling Vicki how much Boise had changed since I was a kid, we glanced out the window and saw a vivid illustration. A guy had just stepped off the bus with a cut-off t-shirt and some extremely low riding shorts, revealing a large mid-section to me and a good portion of bottom to Vicki as he passed. I think she got the worst of it! Thank you to Vicki for being my companion and thanks to Cindy Whiting for taking excellent care of Tadman while I was away.


Tuesday was a good example of how crazy May can get. Kate had a field trip to the YMCA, I had to leave it early to pick up Parker for a doctor's appointment that started at 3:00, I got home just in time to pick up a vegetable tray for Kate's soccer party at 6:00, which we had to leave early so we could get to Rachel's orchestra concert at 7:00, then leave it as soon as Rachel's chamber orchestra had played in order to get to Hunter's big important semi-final AAU basketball game. (His team pulled out a 3-point victory.) Then we went home for a little dinner, homework, practicing, and bed. In addition to all this activity Rachel, poor girl, has all her end of the year projects and tests to work on and study for.


After such a busy Tuesday I had a hard time getting out of bed at all on Wednesday. I had to get up eventually when my sister and mom came to put away laundry. Taddy, I'm sure, was glad to have a little variety to his morning. After shaking off the cobwebs I had to at last get my stinkin' bills paid (I'd been attempting to pay them for several days but been distracted). Now that I have a 4-inch stack of statements from my insurance company and another 4-inch stack of bills from Saint Luke's, paying the bills is a much longer process than it used to be. Seriously, it took until the evening to finish up. Thank goodness they are safely sealed and sent today.


There were some other things Wednesday--grocery shopping and a football spaghetti feed--and another late night.


I'm finally getting a chance to catch my breath long enough to write a few things down today. I'm sure I would have spent today in bed if Karla hadn't rousted me out and encouraged me to go to book club. We walked so I even got a little movement in and she was kind enough to eat with me so I wouldn't have to think of something to eat. Eating out is always easier for me.


Thanks to all my family and friends for hanging in there with me. This is going to be a long treatment and you all will have put a lot of service in, made a lot of meals, and done a lot of laundry before it's over--and that's just the chemo! You'll have had it with me by the time I'm doing surgery and radiation! I hope each of you know how sincerely I appreciate your help. Right now about one day every week is very hard and stressful at our house. Without all the help our family is accepting that stress would fill 2 or 3 days of each week. I hope you know how much of a difference you're making in my life. Each little act of kindness pushes me that much closer to the finish line!

Thursday, May 14, 2009

Tuesday, Wednesday, and Thursday. How's That For a Catchy Title?

Sadly there is so very little to tell about what's been going on since I last wrote on Monday. Once again, I have a hard time even remembering what I do from one day to the next and have lost track of dates and days of the week completely. Maybe if I just start writing I'll remember something again.
My friend Deleice came over Tuesday morning to get me on my bike and moving. It was windy and kind of cool, but the nice thing is--if some one's there to get you out of your house you'll go even if conditions are less than perfect. Tadman came along in the bike trailer. I have a little 5 mile circuit I've been riding, and yes, I know 5 miles is pathetic, but it's a challenge right now. Tadman enjoys all the scenery along the way such as the ducks, the lawnmowers, and of course, the trucks.
After the bike ride I got really ambitious and went to Municipal Park to meet Kate's class for lunch (they'd been on a field trip to the MK Nature Center). It was fun to see Cindy and Bill Whiting and Sam there waiting for James, and Cindy was nice enough to take a few photos of Tadman playing. Kate was excited to have us there and got to play with Tadman a little after she ate, but we didn't have long to spend with her until she was back on the bus. Municipal Park is in my part of Boise, where I grew up and went to school and church, so I always enjoy spending time in that part of town. In fact, I've done a few end of school year field trips of my own in that very same park.
I'm sorry, but that's all I can remember about Tuesday except for a very good dinner. Actually after checking my calender I see I went to a football boosters meeting. How could I forget? Although there's much to talk about and plan for, all those meetings do is make me sad it's not football season yet. I am really looking forward to seeing Hunter play again at the end of the summer. Prepare for total domination on the line of scrimmage!
More fun on Wednesday--I had an interview with the Pathways people, Greg, and Parker at Lowell Scott. I was late, of course, but I think the interview went well, with Parker still very excited about going there and me still a little skeptical. As soon as we find out if he's been accepted to Pathways we will sit down and do a pro and con list between Pathways and Christine Donnell. I am excited Parker will be somewhere other than Lowell Scott next fall.
I am so appreciative of my mom and Heather who came to pick up laundry and drop off clean clothes again on Wednesday. I know this treatment is beginning to drag on, and thank goodness my helpers all seem to be in it for the duration, because I need the help more now than I did at the beginning, and I'm sure I'll need it more and more the further we get into it. And as I've mentioned before, Tadman really looks forward to them coming. He's really starting to get tired of me.
I also had a visit from my faithful visiting teachers on Wednesday. Mindy and Brenda came and gave me a great message about hope and enduring and not questioning God but asking Him what He wants you to learn from the challenges you have--a good message for me.
As always Wednesday after school was a crazy mess. Parker had a doctor's appointment, Rachel orchestra, Hunter young mens, and Parker scouts--just a typical Wednesday evening.
This morning Deleice was back again to get my rear end out of bed. Today I definitely wouldn't have gotten up if she didn't come for me. Thank you, Deleice, for making me get up and do something. We did the same loop, but today it was a little warmer, and the wind was at our backs on the way out and in our faces on the way back, and that made it a little more challenging. After the ride I took Tadman on a walk around the block. He was insistent on going in his stroller. I am sad I'm not supposed to do much walking, because it's a whole different experience than bike riding. I enjoy being able to look more closely at smaller details in landscaping, like Mindy's sublime tulips and another neighbor's white flowering vines. I don't see all that stuff when I'm biking.
I took Tadman to lunch at Cobby's because I couldn't face the idea of food preparation, and then for the rest of the afternoon I wrestled with him to try to get him to lie down and take a nap with me. He's definitely had enough of the "mom in bed." He'd like to get outside and ride his bike and play with his brothers and sisters. But I would not be denied and I finally got a nap out of him. The rest of the day I had very little success in rousing myself out of bed. To tell you the truth I'm just not on top of things any more. I don't know if the kids are getting their homework done or if deadlines are being met. I don't know all the details I'm forgetting. I just hope I'm not as integral to their well being and success as I imagine myself to be. Hopefully they're getting all their needs met without me.
Thank you to all of you who brought food this week, to Deleice for the exercise, to Heather and my mom, and to those who commented on my blog. It was nice to hear from you, John, and I would have e-mailed to you if you'd left me your e-mail address. That is very bad news that you won't be renewing your BSU tickets, and yes, you would think you'd get some sort of a deal because you know people. I think you ought to reconsider. I can't imagine living in Boise during football season without Bronco football! I am still trying to figure out how I'm going to fit surgery in in September and not miss a game. It keeps me going! Thank you to my super sweet niece-in-law (?), Bethany, for sending me a package with earrings of her own design. I was so excited to receive it.
I apologize for my lack of wit and personality in writing. I hope to get it back some day when I finish this mind numbing treatment.

Monday, May 11, 2009

A Good Morning--A Bad Evening (Sorry to Not Be Positive)

Thank you, Annette, for picking me up bright and early this morning, dropping Tadman at Carrie's house (you go girl, offering to take Tadman even though you have no little ones at home!), and escorting me to treatment. Again they were super efficient at MSTI, calling me in for blood work when I had just sat down to contemplate the wonders of a new puzzle. Annette pondered for me while I went to have my port accessed, on the first poke again. I don't want to get overconfident, but I think the days of 13 attempts to access the port are a thing of the past. That's something to be grateful for!
Of course as soon as I rejoined Annette at the puzzle they were coldheartedly calling me in to see Dr. Montgomery--always an interesting experience, but I usually end up waiting a long time in the little patient room when I could be out in the lobby enjoying the company of my friend, Annette, and doing a puzzle. When Dr. Montgomery did arrive he had interesting news. Unbeknowst to me he lessened the dosage of my last infusion due to some lingering side effects from the week before. I didn't even know, but wish I had because it may have given me the mental lift I needed to drag myself out of bed a little more often last week. He decided to keep the dose smaller today, too, hoping for a turn around on all the remaining side effects. He gets a thrill out of the chemistry of chemotherapy and searching for that secret balance of intensity and side effects. It's just his bag, baby. So no mouth, foot, or hand sores this morning, but since I was more fatigued and down and out last week, Dr. Montgomery's final decision was to keep the dosage lower. He also prescribed more Neupogen shots, and bummer, because those are the deadly expensive ones. There's that Mother's Day gift I was hoping for.
After Dr. Montgomery comes infusion, and this time Annette had to leave the puzzle to so she could go with me. Even with steroids, 3 nausea meds, and all that saline, oh, and the chemo, the infusion took no time at all. Once again it was just enough time to have a little juice and a bagel, cozy up in a heated blanket, have a little witty conversation with Annette, the nurse, and other patients and companions, and say goodbye till next week.
Over at the Saint Luke's Pharmacy we waited almost as long for my prescription as for the entire treatment at MSTI, but I needed to get those $300.00 shots (that's EACH shot) so I was happy to wait. With shots in bag, Annette whisked me off to lunch at one of her husband Bob's favorite lunch places, Pat's Thai Kitchen, right by the Ram Pub, off Broadway. I was excited, because I love Thai food, and just minutes after arriving I was enjoying my beef pad thai and Annette her stir-fried vegetables with chicken. The food was good, and service and preparation very efficient.
After picking up a happy little Tadman, Annette dropped me home, just in time for me to join Becky to think of a delightful little something to give Lyuba Ceperich for her birthday. We went to Fred Meyer and settled on planting an Early Girl tomato plant and a few herbs in a durable, lightweight and cute little pot. We hope Lyuba and her family will be enjoying some juicy delicious tomatoes in a few months time.
The rest of the day remained hectic with fillings for Parker at the dentist and a major grocery shop with Hunter after that. Kate was happily playing at Ellie's house all this time, while Rachel was home with the little Energizer bunny.
The day, although busy, was going pretty good up to this point, but in the later evening when dinner (as provided by the young women tonight, thanks!) was being served, homework done, and the kitchen cleaned, the meltdown began. I won't go into nasty details, but there was a lot of frustration, a lot of angst and anger, and a lot of negative thinking filling the house. Seems our house is falling apart, the kids are lazy, prayers are going unanswered, and doom is imminent. A little bit different than the picture I've been painting. I resisted the gloom well at first, but I get tired sometimes, and when I'm tired I can start buying in to the negativity.
So once again, this time out of absolute necessity, I'm counting my blessings. First, I'm alive today, Greg has a job today, my children are fed and clothed today, I have insurance today, and transportation, and a place to rest, a place to be together with my family, a doctor with experience, the medicines I need to get better, and an army of friends and family stepping up to help. Today I have all those blessings, and I'm pretty sure I'll have them tomorrow. Today I live in a beautiful neighborhood alive with birds, ducks, squirrels, horses, chickens, and children. Today there are blossoms on the trees, the sky is blue, the air is fragrant and warm, and the grass is as green as it will be until next spring, whether the sprinkler system is working or not. I love my bed, my hand held Yahtzee game, my books, and Tadman's trucks. I have disposable diapers for my toddler, my trash got picked up today, and I have a washer and dryer, but I usually don't have to use them because my sister does my wash! Do you feel sorry for the poor pathetic Nettles family yet? I have made a personal vow to never give in to discouragement and self-pity. I do not believe that is pleasing to our Father. And I will put my trust in Him and lean not on my own understanding. Please, for my own sake, don't let me forget I said and thought that. You can slap me if you need to.

Sunday, May 10, 2009

Racin' for the Cure, Proms, and Moms, All in the Same Weekend!

It's a little disturbing when you can't remember things that happened only a few days ago, but I must admit every time I write this blog I need to look at my calendar to try to figure out what I did. I see from Friday's square that Kate had piano lessons before school, and now I can remember taking her. And remembering that reminds me that my mom and my sister came and picked up laundry on Friday, and that my mother-in-law came and picked up Tadman while they were at my house, and that while all of them were here Melissa McOmber stopped by with some lunch from project day (that was nice!) and then I remember that after they all left I went to project day and talked with Melinda and Karla and Jamie and had a lovely piece of angel food cake with strawberries and whipped cream. Impressive to remember all of that just from having "piano lesson" on my calendar, huh?
My kids were busy and excited for the weekend and going all directions when I got home. Kate wanted to play with friends, Hunter was off to basketball practice, and Rachel and Parker and I went to Target to get a few beauty items in preparation for Rachel's prom date on Saturday. The end of the weeks and weekends are still the best for me treatment wise. I luckily had the energy to be shopping with Rachel in the evening even though I had been up since early in the morning taking Kate.
Then early Saturday I was up again to get ready for the Race for the Cure to raise money for the Susan G. Komen Foundation. Rachel was off to a quartet competition, Hunter and Greg to basketball, Tadman with grandma still, and Kate, Parker and I to the race. My sister and her husband Kelly picked us up and efficiently dropped finished laundry off when they came. Also going to the race--my sister's 4 kids still at home, her married daughter with her husband, Dave, and grandma. When we got down to Park Center Boulevard, the race site, 15,000 other people were there ready to participate as well. My mom with my sister and some of the kids as companions did the one mile course, while my kids, Heather's husband, and Shannon and Dave did the 5 k course. It was quite a unique experience walking with so many people. At the start it was almost impossible to move, but after we'd passed the half-way point and were on the way back to the start the pace picked up considerably. What a great group was assembled to walk! There were people with pink kitty hats and false pink eyelashes, people with long pink tutus, pink mohawks, and lots and lots of people with tiaras. Many people brought kids in strollers and on scooters, cheerleaders cheered the walkers and runners, and boy scouts distributed water. It was an upbeat and festive environment to be sure.
Soon after the start I ran into my friends, the Noklebys, and their 5 children, and Parker and Kate and I were lucky enough to walk the rest of the way with them. Their kids were great. Their sons Beret and Carston both held my hands for a good part of the walk. Carston helped me start conversations with other participants by telling them I had cancer, and they kept me engaged and entertained so I completely forgot my chemo feet were hurting. Thank you, Beret and Carston, for taking such great care of me during that race! I was so proud of Kate for walking at a good pace for the whole course, even though she woke up extra early on a Saturday, and even though she knew she had a late afternoon soccer game.
Once the finish line was crossed there were all kinds of treats and give-aways. There were bagels, Popsicles, and milkshakes, scarves and bags, and grooming kits. And what a beautiful morning for the event!
Shannon and Dave were there waiting to show us around the promotion tents and take us home after the race. We even got the opportunity to see their honeymoon town home over in the Vista area. They have painted and decorated and it's a great first home for them to share together and I'm so happy they are so comfortably situated! Thank you, Shannon for getting us signed up for the race and encouraging us to participate. It was a really good experience and I know my kids will remember it, too. I really liked seeing all the families walking together for a mom or grandma with cancer. I so enjoyed it, and hope we will get a rain check on those Icebergs another day!
I missed Hunter's first basketball game for the race (he won!), but was able to make it to most of the second. After making it close for the first couple of quarters, they ended up pulling away and winning by double digits over Capital, so they will enter next Saturday's tournament undefeated and rolling and I will be excited to be there!
Kate and I had to leave a little before the end of Hunter's game to get to her soccer game. It seems Kate wasn't the only kid on her team who had and early morning and a busy day. Kate played goalie the first half and got shot on over and over again and got very little support from the other girls. They just weren't running at all, weren't getting any shots on goal, and were almost chatting more than playing throughout the game. Thank goodness for end of game snacks and tunnels. Sometimes they are the only things that make those soccer games worthwhile!
After soccer we had to hurry home to help Rachel finish dressing for prom, get Parker to a birthday party, and Hunter to a basketball party. So much for that Saturday night date I was looking forward to! Rachel had her makeup all done and looked stunning. I was able to sew a tiny rip in the seam of her dress and help her curl her hair, then wait with her while she wondered where her date could be. Luckily he did come eventually! They missed their dinner reservations, but Rachel is such an adaptable date she had just as much fun eating at Sonic afterwards. I will put pictures on the blog when they become available.
Greg and I settled for Thai food at home while our kids spent the evening partying.
Now I'm up-to-date because I made it to Sunday. That's today! Since it was Mother's Day Greg brought me a huge breakfast in bed. The kids like that tradition 'cause they end up with breakfast too. Kate presented me with a lovely ceramic tile she painted for me at school. Then at church I was treated to a lovely tribute from my daughter Rachel who spoke in sacrament meeting about what she'd learned from me. It was better than any gift she could have given me to hear how much she loves and admires me. The feeling is mutual--there's no one I'd rather have as my oldest daughter. She's intelligent, thoughtful, artistic, well versed, kind, charitable, and beautiful to name just a few of her attributes. Church started out great and stayed that way. I am enjoying it more than ever since my diagnosis. I think it's because I feel closer and more united with my church family than I ever have before, so now church is like a weekly family reunion--and that's a good thing because I like family reunions.
We topped off a great Sabbath by visiting both grandmas in their own homes. I feel so lucky we live so close so it's possible to see them both today. We are so grateful to them for raising us and continuing to love and support us as adults. You are never too old to need your mom!
In conclusion tonight, I am thankful for my incredibly full, rich life surrounded by a large family, lots of friends, a ward family, and a strong community. I'm grateful that people like me more than they used to, and ignore my faults because they are focused on meeting my needs. If cancer has helped my children see the value of what I have chosen to do with my life, it's worth it! If cancer has forever transformed me and truly made me love and appreciate those around me more completely and unconditionally, it's worth it! If it inspires my brother to call me, like it did last night, that's a pretty cool side effect. It will never be fun, but thanks to a remarkable support group, it may just be worth it!

Thursday, May 7, 2009

It's Official. I'm a Chemo Zombie.

It's Thursday night, and I'm hard pressed to remember a thing I have said, done, or thought since I last wrote on treatment day. It's a bad sign, and I'm afraid it's a sign of things to come. I may be in this fog for awhile, and I'm hoping my husband, my kids, my family, and my friends will forgive me and not forget that I used to be concerned, intelligent and fun.
I know Brenda Walton and I went bicycling on Tuesday. Tadman came along in the bike trailer and enjoyed the ride. We stayed dry except for the time Brenda rode through the sprinklers. Yes, exercise does help lift the fog a bit, although it usually makes me more tired several hours later, but I like the getting outside and the moving, AND the companionship. Right now one of the biggest challenges is feeling out of the loop and content to forget the world, yet isolated, yet too blah to do anything about it. I'm pretty sure I must have slept some of Tuesday, because other than the bike ride and the Joplin ice cream social I don't remember a thing.
My mom and Heather came Wednesday and I was still in bed, but I got up to help them put laundry away and tidy up my kids' rooms. You can imagine how excited Tadman was to see them. He's so tired of me sleeping he even bit me today to wake me up! He was thrilled to see the grandmas (he calls them both grandma) and their truck. As this treatment goes on the service my friends and family provide is becoming more and more important. I can tell you, if my sister and mom don't come, that laundry will not get done and those beds will not get made and then my kids' lives will just get more and more chaotic. It's invaluable to have them come. The meals are invaluable. Every single contact I have is becoming more and more precious to me.
I had to take Parker to a doctor's appointment after school on Wednesday and after dropping him home where Kate, Tadman, and Hunter were, I went to the free makeover class for cancer patients at the St. Alphonsus Cancer Care Center. I was the only attendee, and there were 4 ladies there to facilitate the class. It was an uncomfortable situation, and disappointing. Maybe I expect to much, but here are all these great volunteers, willing and anxious to help cancer patients, right, but none of them want to talk about cancer. It's all just small talk, chit chat, and now put the eyeliner on. Most of them are in this game because they had a mom, a sister, a friend with cancer, yet there seems to be some huge barrier, some vow of silence. It's weird. They didn't ask me one question about my lifestyle, my diagnosis, my kids, whether I worked or not, or anything else. The makeup colors were a little obscure, too. I now own a lovely shade of orangy red lipstick if anyone would like to try some.
Attending the class was probably a luxury I shouldn't have afforded, because I came home to Hunter asleep on the couch, Parker and Kate AWOL, and Tadman wandering around alone in the backyard with his pants off. Fortunately later I figured out everyone was in good hands with the possible exception of Tadman.
Today I woke up only to have lunch (except for when Tadman bit me). I went to Flatbread Pizza Company in honor of a sweet friend's birthday. It was a nice meal with a great salad. I can't say how much more I prefer going out to lunch than making my own now days. Anything I have to expose myself to long enough to make is disgusting to me by the time it's ready to eat.
All I need is a nanny and a personal chef and this thing will be doable, huh?
I was fortunate enough to have all my meals out today as this evening I had the completely new experience of going to the survivor's dinner for the Susan G. Komen walk this weekend. I went with my friend Tammee and her sister and mother, both breast cancer survivors. The cool thing about the dinner, or one of the cool things, is that it's free for survivors, and you're considered a survivor from the moment you're diagnosed. The dinner included a silent auction and a live auction and was a big affair. It was in the large room at the Boise Center on the Grove and it was packed--mostly with women. It was an emotional evening for me, mainly because several women came up to me--since I'm bald it's pretty obvious I'm in treatment--and hugged me and told me how many years they'd been survivors. They just came spontaneously, offered love and encouragement, and made me cry. It all of a sudden seems like everyone has cancer, knows someone with cancer, has had cancer, or some version of the above. There were so many young women survivors there I couldn't believe it. Although it's an evening of celebration, there were a lot of sad eyes in the crowd. It's a brutal disease!
On that note, it's a really good day to count some blessings. I am thankful for all my friends who so willingly keep the meals coming. You are making a huge difference, especially in my children's' lives, because I can save my precious energy to proof read papers and review homework assignments instead of cooking. I am thankful for my friend, Sarah, who showed up at my house last night with some beautiful lilacs in a Jack in the Box cup just to check on me--and she doesn't live even remotely close by! The lilacs make the house smell great, Sarah. I'm thankful for a comfortable bed and a warm, comfortable room, and for Sesame Street to keep Tadman momentarily entertained. I'm thankful I have such a good and resourceful little boy who entertains himself so well, and I am thankful for the guardian angel who watches over that boy when I'm not doing as well as I should. I am thankful that I'm not in pain, and I am able to rest when my body is tired. I am thankful that my doctors are optimistic that my cancer can be cured and I can live to see future weddings, graduations, and grandchildren. I am so thankful for my husband's work and our insurance so I am able to receive treatment. I am thankful to live in Boise which looked beautiful downtown tonight with a clear sky and a full moon and the train depot on the bench to the south as we were leaving the Komen dinner. I am thankful for all the times I'm changing diapers, watching sports, reading books to kids, and all the things that make me feel like a mom and not a cancer patient. Thank you to all of you who make contact with me often and for one more moment keep me from being a chemo zombie.

Monday, May 4, 2009

To Borrow A Line From the Bangles, Just Another Manic Treatment Day.

Tammee was at my house bright and early for treatment day. When she got here Tadman and I were almost ready to go, but Kate was having a before school meltdown because dad, instead of mom, was helping her get ready for school, and let's face it, dad isn't always as patient as mom. But I put her in Greg's car screaming, Tammee loaded Tadman in her car, and we were off to Vicki Worthen's house where Tadman was staying. He, unlike Kate, was happy to be away from mom. He was excited to stay with Vicki.
Once at MSTI it was another one stick and port access achieved. That's status quo now. But they were so fast cuing me from blood draw into the doctor I barely had time to work on the puzzle. They should definitely schedule puzzle building as part of the appointment, otherwise I don't even have a chance.
Puzzle building is much more fun than meeting with my doctor who barely even talks to me. He scrolled his computer screen, talked on the phone about another patient, said "Alright, I'll see you next week," and was gone. He didn't even listen to my heart with his stethoscope this week. Usually at least he does that. Then Cathy his nurse came in and asked if we were a go for treatment this week and I said, "He didn't say, but I think so," and she checked my blood counts and said they looked good and said she assumed we were doing treatment. Yeah, he loves me.
Not 2 minutes after leaving the doctor's appointment I was called in for infusion, so it was optimistically a 5 puzzle piece day. But the people in infusion made up in kindness what Dr. Montgomery lacked today. I had Tammee, the nurse, and the gentleman volunteer to talk to, I had a bagel and a cranberry juice, a warm blanket, and lots of anti-nausea medications to comfort me. The whole process was over in the blink of an eye and Tammee and I were off (without the warm blanket, unfortunately). We picked up a few new and refilled prescriptions and went to lunch at the Brick Oven Bistro. Great lunch place! I had an open faced turkey sandwich with mashed potatoes, stuffing, and corn gravy. Definitely comfort food. Thank you Tammee for the lovely company and satisfying lunch, and thank you, Vicki, for keeping Tadman engaged and happy while I was away. He seemed very content wandering around the yard with you when we picked him up.
After Tadman rode his bike around the yard at home for a few minutes, we left to take Hunter to the orthodontist to get his retainer adjusted. It's been some time that it's needed it, so one of his teeth had shifted a bit, but Dr. Matunas believes it the tooth can be readjusted if he gets back to wearing the retainer regularly. Tadman contented himself playing with the "hucks" in Dr. Matunas' waiting room, and he was very reluctant to leave them when it was time to go. There definitely was a little separation anxiety and some tearful goodbyes.
After a little lunch for Hunt and Tad at Wendy's, we picked Kate up from school and headed home, but saw Ellie Phillips walking with her hands full, so picked her up and dropped her at her new house, which Becky was kind enough to give us a tour of while we were there. Her new house is beautiful, with a nicely remodeled kitchen and plantation blinds in her master. She has made an incredible amount of progress getting things moved in--with not a lick of help from me, I might add. She even has several pictures up on the walls. Wait to go, Becky!
Later in the evening Rachel and Kate and I were lucky enough to have Ellie's companionship again, this time at the spring show of Sweet Liberty dance team. I had never been before, and since we know several girls on the team and since they have had such incredible success in competitions this year, and since the director is a teacher of Parker's and a friend of mine, there were lots of reasons to go. Evening activities are always a sacrifice of course, because you're wasting valuable homework and practice time while you're away, but every once in a while you have to shake things up, right? And it was impressive show. As I told Rachel, if the football team worked half as hard as Sweet Liberty, they'd be state champions every year.
Thank you, Greg, for getting dinner together while we were out having fun. We got home, ate Greg's dinner, finished the homework, and sent the children to bed. Oh, what a long day!
A quick blessing count to end my blog tonight, because I need it. I'm thankful for the spring weather we've had. It's full of variety and energy, the air smells great, and it's producing some unusually bright flowers this spring. I'm thankful for Tadman and his excitement in all he does. He definitely loves trucks and riding his bike intensely! I'm thankful for Kate, Parker, Hunter, and Rachel, who like the spring weather, add energy and variety to life. I'm so thankful my husband has a job and is willing to work, because we have lots of medical bills that demand our money and attention. And of course, I'm thankful for my friends for themselves, and for all the kindness and help they are offering me. THANK YOU!

Sunday, May 3, 2009

Chocolate Fountains, and Togas, and Football, Oh My!

Since Tadman has changed sleeping patterns and now goes to bed at 2 a.m., wakes up at 7:00 when the sun rises, then plays himself into exhaustion and falls asleep on the floor at about 5 p.m., then wakes up at about 8:30 and eats dinner by himself until it's time to go to bed again at 2 a.m., it's more convenient to get to water aerobics now. (He used to like to sleep in until it had already started.) I went again on Friday--yes, that's twice in a row--and there was a substitute instructor who was just as fun as the regular instructor, but just let me blend into the other students instead of introducing me! Sometimes anonymity can be nice.
When I came out to the parking lot to drive home I had a super flat tire on the rear driver's side tire of my van. I called Greg but he was with a client (it's always a mystery his store is slow when every time I call him he's with "a client"), so luckily my mom and sister were still at the Y for the water aerobics class and they gave me some quarters for the air machine at the gas station and made sure I got there o.k. My van is just slowly falling apart, but thankfully it still starts whenever I need it even though it's dented and the windshield wiper fluid won't spray and the running board is bent and now the tire's flat, but it still starts! Whether it's quarters or laundry services I need, my mom and sister are still coming through for me.
In the afternoon I made my way to project day at Katie Thatcher's house. We had a great tasting healthy soup provided by Karla, and then, get this, a chocolate fountain with little fruits and cakes for dipping. I've never experienced a chocolate fountain on a Friday afternoon before. I thought they were strictly for weddings and parties, but Katie parties on Friday afternoons--yes! Most of us worked (me, very little) on door decorations for teacher appreciation week at Joplin. Cindy Whiting is working on several doors simultaneously, bless her heart. Those teachers might go unappreciated if it weren't for the ladies at that project day.
Later I took Parker, Tadman, and Kate to McDonalds to meet Misty Newson and her kids. It was great talking with her while the kids played and enjoyed themselves in the indoor playground. Once again, it's great to be surrounded by concerned and helpful friends keeping me engaged and going places.
Misty's daughter Daysha accompanied Kate and I to Kate's soccer game next. Kate played a very aggressive team that dominated her team a little bit, but the great thing about 7-year-olds playing soccer--they think every game ends in a tie. And they're always more excited about the snack than the game! Kate tried her best, did a great time making big kicks as a defender, and had a great attitude throughout the game, so it was a success.
Our family had another early Saturday, as Hunter had an 8:30 basketball game. I let the other kids sleep in because it was such a great rainy Saturday morning, and I thought I'd love to sleep in on that kind of morning, but since I couldn't, I slept in vicariously through them, and man, when Tadman's asleep, I let him sleep! Hunter's team is playing so well. They played their Saturday morning game on a tiny court at Lewis and Clark, and while Hunter is probably the biggest guy on the team, they're all getting pretty big now so it's a whole different game with those big sweaty boys on a little tiny court. It's hard to have any spacing or passing lanes, but they adapted and beat Kuna easily in the first game.
After picking up Kate and Tadman after the game we were off to my sister-in-law's house for a special all girl (and Tadman) party in celebration of May Day. We learned a little about the history of the holiday, made togas and head wreaths, and ate a glorious breakfast brunch of a kind of sausage and egg pastry, spinach and hazelnut salad, fresh fruit, hot cross buns, and orange yogurt topped with homemade granola. Robin and her daughters are fantastic cooks and present food beautifully which I always think makes it even more tasty. My niece Shannon took pictures, and I will be sure to include one in the blog when she sends them. Taddy and my nephew's daughter, Mackenzie, were very cute in their togas and headdresses. Tadman somehow managed to make his manly and only started having fun when Mackenzie broke out the trucks.
We enjoyed the party so much we were late for Hunter's second game. Luckily Grandma Dee and Ron were there to represent the family until we arrived. Hunter's team played Mountain View, and while they were a little more challenged, mostly because of their own mistakes, they ended up pulling away and winning by a comfortable margin in the end. They have just 2 games next Saturday and then tournament and have certainly exceeded my expectations by going undefeated to this point in the season. Hopefully they'll continue to play to the best of their abilities. Greg has done a great job of coaching them and bringing them together as a team. During school ball Hunter was often frustrated and irritated by his teammates, but he is really enjoying spending time with these guys during this AAU season. Greg does a good job of reigning them in and making sure they behave appropriately toward each other, and if they don't, they run.
OK, I'm not proud of this, but Saturday night Greg and Hunter and I hit the Boise Burn game. It's like the Walmart of football. They play at Qwest Arena on a field just a little bigger than a basketball court with bumpers all around. It seems like they really like slamming their opponents into this wall surrounding the field, and the fans seem to like best that if a football flies into the crowd and you catch it, you get to keep it. Coincidentally the players for the Burn were wearing pink jerseys to be auctioned off to benefit the Susan G. Komen Foundation for breast cancer research, but I didn't know that before the game. The Burn were victorious by about 200 to 21 or something, and although it made me anxious for real football season to begin, it's definitely nothing like real football. It's Cool Whip and real football is whipped cream. Can't wait!
Today has been another great Sunday. Church was mostly spiritually uplifting, although between my own kids and being at the back of the congregation, it was a little like being in the nursery. Tadman is much more physically active and verbal than he was a few months ago, so it's a challenge to keep him quiet and in control each week. This week he was considered to be too sick to go to the nursery again, so it was hard to listen and catch the messages in every meeting, but even so, it was great to be with friends at church.
And after church my family always enjoys picking on each other, fighting over movie choices, complaining about the small servings of home evening treats, and being disgruntled in general, but it's all good because in spite of all the bickering that goes on, we all get to stay home together, we have a nice meal, we have some gospel teaching, we have the time to talk or nap, or write blogs, and it is a day unlike the others, so it's all good.
Thanks to my sister Heidi for the package full of gifts and letters of encouragement for each member of my family. Heidi, I know you are frustrated that you can't be here to help, but I feel you here, and having Leah for a day was a great representation of you. I appreciate you writing a personal note to each of the kids, even Tadman, because each has special concerns and different perspectives. Of course we look forward to seeing you in person sometime soon because that's always more fun.
I continue to enjoy your comments about my blog. It's a great way for me to feel connected to my peeps, so if you have a few minutes, leave me a comment. I like the feedback.