Water tastes like metal and juice like kerosene so give me a Diet Coke!

Jitters, shakes, pins and needles have been dominating my day. I thought perhaps it was the leaded coffee I have been drinking since my body is more accustomed to the half-caf or completely unleaded. I just can't get rid of it. I woke up and felt too woozy to take a shower, can you imagine? The thought of hot water on me made me want to hurl. So I updid the hair, rewashed the face and brushed the teeth before we headed to the big city. My dd was so excited to get her hair cut, did I teach her to be so vain? How can I strive to be such good and moral person and still love bling and pedicures? It will never cease to amaze me. She looks adorable nonetheless and I can't wait until she stops asking me every five minutes..."Is my hair still short mom?" mmm hmmm. Those of you with four-year olds going on 14 know what I am talking about. My son actually shocked me this am as we were all preparing to go out the door he ran to the bathroom, grabbed a rag, soaked it in water, and pushed it up over his forehead forcing the 9 strands of hair that my husband insists upon leaving as bangs pointing straight to heaven. "I did my hair today," he exclaimed as he proudly pointed to his reflection in the mirror. I laughed so hard I almost peed my capris.

My dh brought me home some spray for dry mouth called Oasis. It tastes sort of like a watered down mint mist. I think it works, but I am not for sure yet. My taste buds are so outta whack. I am hungry every two hours. I have got to remember to pack snacks, I think that's why I get the shakes when I am out and about, I need a boost to get me through the afternoon hours. This afternoon I had cinnamon sugar toast and that hit the spot. I was reminded of the yummy snack while watching the little kindergarteners climb onto the school bus after school today. I am sure anyone who saw me thought I was nuts, being almost brought to tears by such a normal everyday sight. I could smell the hay in the barn where I stood on the steps while my mom snapped a photo of me on the first day of school. As I watched my daughters friend wave through the window with his face pressed to the rectangular window, I was reminded of my own long rides home on the big yellow bus, I remember waving to my brothers and sisters as I left in the morning and again as soon as we cleared the final hill and I could see the hundred year old farm house in the dusk. In the winter mom would have a pot of hot milk boiling and maybe some homemade bread. As I got older mom took a night job and making the afterschool snacks became my responsibility which is when they became more simple. Man, I feel old, but what a good memory.

Something new every time...

I think the hardest thing about this whole ordeal is the inconsistency of my reaction to each treatment. Each time it is very different and that makes it hard to plan your life around. Tuesday evening was my roughest night in awhile. I spent most of the night and early morning pacing the bathroom waiting for something to happen. Finally after listening to my stomach for over an hour I decided maybe I was hungry. So I had a bowl of cereal and felt much better. I can't even translate my own symptoms! I went to bed about 4:30 am and slept until 9 on Wednesday morning. I was tired yesterday, but that was it. I did pop a couple of Zofran to keep the nasties away. Last night I slept like a rock. I went to bed about 10:15 and just woke up just now, at 7:45. Because I never know how my body will react to chemo, this time I made plans. We are going into the big city to get my dd a haircut and meet a friend for lunch, then I am due back here to help out a bit at the daycare. I think it's actually easier when I have something planned. I just tell myself you gotta get up and go, you got things to do. Otherwise I may just crawl back into bed and be miserable all day. Other things that are new this time; watery eyes and dry mouth. I know I'll get through this, but it would be a whole lot easier if I knew what to expect each time. My dh works today and then has the weekend off. The weatherman is predicting rain, which doesn't bother me. My oncologist said his biggest fear for me right now is West Nile. He said that there isn't a documented case of West Nile in a chemo patient and he doesn't want me to be the first. He suggested staying inside and if I have to go out, wear bugspray with deet. I can't believe August is over. This summer has flown by, hopefully the rest of my treatment goes just as fast.

Knowledge from the WWW

I am icky queasy tonight and wanting to take my anti-nausea meds early, but first I thought I'd take a look online at the side effects. Needless to say, the internet just saved my life. Don't really feel like overdosing so I will drink lots of water to flush my system instead. Thank you Lord, for knowledge for with it brings power to change our minds.

Chemotherapy, Round 4 (eight more to go)

Took my mother today to treatment, dh had to work and the kids went to daycare. It was a 9 o'clock which is pretty late so we didn't even get started till almost 11. It went smoothly but made for a long day. Mom taught me how to crochet and I am making a gift for a dear friend of mine. It is so easy. I love it. I laughed because before cancer I would have never had the patience to sit and learn such a craft. I am just not a patient person, or was not. My mom had to giggle, too, she said she would have never even thought of teaching me before....just goes to show that God knew what He was doing. I am a more patient, more compassionate, more educated, more open minded person which is an awesome trade off for a few chemo treatments and a surgery or two. My body heals fast and my soul is fed forever. Praise the LORD!
My precious children had an awesome day and were in such good care, they came home using words like short and long in a sentence. My son told me a story about his picture that he colored. He even named all the people in it. It brought tears to my eyes. One of my main priorities when I chose to become a sahm (stay at home mom) was to use my education degree to the fullest extent and make little geniuses out of my children, needless to say I have failed big time on that goal. I hardly play with them anymore, I always have some excuse...I'm tired, or I'm busy or I have to clean up. What is the matter with me, why can't I just stop and hold them? I think that is the thing I miss the most, just grabbing them up and holding them. I am just now getting enough strength to attempt it and man does it feel good. Praise the LORD, again!
A super amazing gift from God friend turned me on to another spectacular blog today. I think the blog is replacing coffee time in my generation, we are all too busy with our everyday to get together so we talk to each other through writing about our daily experiences. Isn't it amazing how someone else's day can affect our emotions. I love blogging. We never even see or hear each other, but we feel like we are true friends.... I read some where that a friend is someone you can sit with for awhile and not say a word and walk away feeling like you had the best conversation ever. I feel that way about reading other people's snipit's of our daily walks in life. They are really amazing conversations between friends that don't even know each other. Praise the LORD a third time. AMEN!

Praise God from whom all Blessings Flow

I tried, just now, to lie down again. I am exhausted but my heart is full and my dh and I are still shocked and overwhelmed at what we have experienced together. We have come to the conclusion that God was here this weekend. His presence could be seen or felt in every person who came to our tiny community to share in the most amazing thing that has ever happened to us. There is simply no other explanation for the awesome blessings we have received from our family, friends and neighbors. Blessings are unexpected acts of kindness. We could have never expected the outpouring of support that culminated in Saturday's activities. I am so full of thanks. I am overflowing. Gratitude is the heart's memory. Life is not measured by the number of breaths we take, but by the moments that take our breath away. I cannot catch my breath. I need oxygen. God is great, God is good. Every single moment of yesterday will be with me forever. There are so many emotions that I cannot get a hold of right now. My husband and I keep asking ourselves, are we worthy of such blessings? It is so difficult to comprehend the magnitude of what we are going through. Every day we thank God for our family and for what we have. Through the process of my illness we have realized that there is so much more to life. We have rearranged our priorities. We have taken our worries and our stresses to the Lord in prayer. I have all these numbers chasing each other in my head. The overdraft amount, the two bills from x-ray and lab I received on Friday, the car payment that is 15 days overdue, another treatment on Tuesday means another tank of gas and more prescriptions...I could go on and on. In one afternoon and evening, a pickle jar of free will donation, a silent auction, a bean bag tourney, a spectacular event organized by amazing and talented people, my fear has diminished and I am comforted by the peace that comes from knowing that through the graciousness and mercy of many, many compassionate and loving people I am going to be okay. My children are going to be okay, my husband can breath easy and sleep soundly because we have been touched by the angels who live here on earth. I can't explain how or why it happened but it did. It's not easy accepting this. It is painful and we have tremendous feelings of guilt and unworthiness. The thing that keeps me going is the faces of those who were there, the strong hugs, the kind and encouraging words, the tears. Every person made me feel as if they were rooting for me. It feels like the 'big game' and my cheering section is the entire stadium. I've said it already but I'll say it again. How can I not beat this?
"Trust in the Lord with all your heart and lean not on your own understanding" - Proverbs 3:5

the Dance

Boogie Woogie!

the People.

The power.

the Cake Walk

My son won!

the Meal

Pork loin, chips, lemonade and homemade bars. YUM!

The sun came out.

It was hot!

Snow cones and Cotton Candy!

the Blessing

Pastor prays thanking God for food and fellowship.

the Silent Auction

the Surprise Singers

Lots of goosebumps and tears.

the Bean Bag Tournament

This was the mother of all tourneys. 16 boards, over 30 teams, and tons of beans. Congrats to the Champs Jake and Jeff, way to throw boys!

the Pony Rides

Thanks to my neighbors for this main attraction!

the Inflatables

These were a HUGE hit with the kids - all ages :)!

the Dunk tank

The sun was shining, the water was cold and I dunked him with my first throw. He was a really good sport about it, too.

The Power of the People

You want an example of community solidarity? I have a story to tell you...
Once upon a time, not so long ago, there was this woman from a very small town. She found out that she had cancer, her life was turned upside down. She was drowning in a very deep ocean of terror, confusion, and how could this be happeningness. Then, along came a friend who was swimming in the deep ocean, too. This friend was connected to another friend who was connected to another friend who was connected to another and another and another all the way to the shore. They linked onto the woman and tugged and pulled her in from the deepest part of the ocean to the deep part of the ocean. Then the woman was not so scared anymore. Soon, the friends pulled and tugged the woman into the more shallow part of the ocean, then the woman was not so confused and the shore was becoming more and more visible. After much more tugging and pulling and heaving the woman was pulled by the many, many friends onto the shore. Her life was much better and she was no longer worried about her problems. She was surrounded by people who loved her and cared for her and they had all come together to pull her to safety. She still had some small ponds and lakes to wade through, but this time it was easy with her arms linked with all her friends. She wasn't afraid anymore. She was safe and sound in the care of the people.

I am still in shock from the success of the rally yesterday. I find it hard to describe the awe that I felt as my friends and family gathered to support me and my husband and my children. I couldn't sleep last night thinking of all the amazing people who helped the event happen. I kept seeing the faces of the volunteers who spent many nights planning and manned the different parts of the event all day. I saw the faces of people who came to enjoy the event, visitors from near and far who wanted to come and be a part of something big. I heard the songs of special visitors and felt the hugs from almost everyone who came. As I lie awake into the wee hours of the morning, I could do nothing but offer up praise and thanksgiving to God for such an awesome experience that I will never forget. I had the most amazing time, I feel refreshed and invigorated with a renewed sense of courage and faith that I will use to fight every last, tiny speck of cancer out of my life, forever. Thank you so much for everything you have done for me and for my family.

Bless this Day and Rally, Lord.

Dear Heavenly Father,
Today is a gift from you. I am nervous, anxious and extremely grateful. My friends have been working extremely hard to make this rally a success. Please Lord, if if be your Will, grant us a day of good weather, good food, good fellowship, and good fun. Let the sun peek out of the forecasted clouds long enough to warm our hearts and the water in the dunk tank. Lord, thank you for the pork producers and the food you have given to us. May the meal nourish our bodies and our souls. Lord, thank you for games, music and dancing. Let the children and the adults enjoy time with each other as well as the entertainment. Let my friends and neighbors arrive safely find fulfillment in the day and return soundly to their homes. Your love and mercy is unfailing, Lord. In your Heavenly Name, I pray. AMEN!

Friendship isn't a big thing - it's a million little things.

In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit. -Albert Schweitzer

Oprah was defining a best friend on one of her reruns this week. She said that you can only have one best friend. After much thoughtful consideration I came to the conclusion that I don't have a best friend. Simply because I could not chose from the amazing women that I am blessed to be acquainted with. I have so many friends I can hardly count them. Friendships are difficult as you get older. It is so hard to find the time to spend with a girlfriend when you have a family. But, when you really need a friend they are always there. They bring you a hot meal, or take your kids to the pool. They meet weekly to organize a benefit. They stop by and visit. They email. They pray with their children at night for me. I don't mind not having a best friend. Each one of these women is a strong and beautiful colored silk thread that together produces a gorgeous tapestry of friendship. Who needs a best friend when I have the very best friends of all?

Alone we can do so little; together we can do so much. - Helen Keller

The path to reading...

The kids were playing this afternoon and I got caught up on some emails so I left them alone for awhile upstairs. When I went to check on them this is what I found. This reminds me of when I was younger and I would make paths with my mom and dad's record collection in the living room. I would get in so much trouble....At least it wasn't the reel to reels..., right mom?

Prarie Village

Dh got the day off unexpectedly so we quick read the paper and noticed that Prarie Village was giving train rides. We got the kids ready and high-tailed it to Madison. We had a blast riding the train and the carousel and looking at all the old tractors and antiques. They had lots of vendors and a huge flea market. I'm glad we went. The kids were beat and fell asleep in the car on the way out of the parking lot (which was actually a harvested corn field).

Hair today, gone tomorrow...

It's in my bed. It's on the floor. It's on my shirt, my arms. It's on the table, the sofa, the remote control, the water glass. It's even in my food. I found some strands in my shoe yesterday. It's my hair. I wonder if it would be easier if it all fell out at once, instead of slowly thinning over a long period of time. My scalp hurts, it feels like I got a perm and the tiny hairs are just starting to grow back in. I went outside earlier this morning to shake out before my shower. I can imagine all the birds telling each other, "Tweet, I found the land of milk and honey in this backyard, tweet, tweet. Tons of good nesting hair free for the taking." Better off in a nest than clogging up my drain. I spent a good amount of energy and time cleaning on Monday and everything is all hairy again. If you come to visit bring a lint remover, you'll need it.

I'll have a red beer with a side of gas-x and ibuprofen.

The past couple of days I have had this tummy ache cramp thing. It is not nice. I can sometimes ignore it if I get distracted but usually I am gritting my teeth and bearing through it. I haven't slept soundly in a couple of nights even with diazepam. I participated in a CPR class Monday evening and the nurse who was in charge is a friend so I asked her about some disgusting oozage my port scar has been having and she thought maybe I could call the dr. So I did. Tuesday morning I went in and the pushed and squeezed on it until more gross yellow oozage came out and told me to keep it dry and clean. Whew, that was worth the trip. I asked about my tummy cramps and the nurse said, "Hmm, I don't know, there always is that one person who has these symptoms that nobody else has and makes it difficult. We could x-ray your abdomen and see if we can find anything or you can just try and treat it." Okay. I was always the one who wanted to be first and strived for attention, now my body is doing it for me. Really, I just want to feel better. "Is it cramps or nausea?" she asks me. What's the difference? It hurts, I feel sick, I want to feel better and not have to hold my tummy all day long. I would like to sleep at night. Do you have anything that may help me accomplish that? "Try gas-x and ibuprofen." she says. Great. So I drive to Walgreens and buy the biggest bottle of ibuprofen, even though I have one at home and a pack of gas-x which looks like fancy expensive antacid. I took as much as I could handle yesterday and this morning I was symptom free until after lunch. Maybe it's food. What am I supposed to be eating? Of course, she called me this morning to check on me when I was feeling good. Figures. On the way out of the clinic yesterday I asked her if she could get me some anti-crabby pills. She laughed and said, "Most of our patients have a excuse for their crabiness."

It is hot today, I got outside early and picked some garden goods. We have way too many tomato and pepper plants and I am not canning anything this year so I took them down to the school and hopefully someone can use them. There is more where that came from, too. A neighbor brought over some homemade v-8 juice and I can't wait to open a can of beer and have a "red". Maybe I'll toast the nurses at the oncology clinic.

Learning to jump the waves is a part of His plan.

Spent the weekend with my family catching up on time lost in the fast paced summer of baseball. The Muckdogs had a great season. I missed most of it this year. I always feel a little relief along with the sadness that the end of the season brings. Those boys devote a lot of hard work and energy into that game and it is extremely enjoyable to see their hard work payoff. I have no doubt they will make it as far if not further next year. Good game, boys!

We spent Friday relaxing and Saturday we participated in some community activities. It was really nice to see everyone coming out to support the community. I am not sure that everyone knows what a diamond in the rough this town is. While we were out and about a friend invited us to the lake so we loaded up the boat and took the whole family to the beach. Dh's sister came along and couldn't stop saying how wonderful the water was and how amazing the campground is. I was astounded at how I could be taking one more thing for granted, especially in the midst of all I have been through. We live less than 10 miles from a nice body of water and how dare I ignore it. As I watched my friend teaching my dd and ds how to jump over the waves that came up to the shore, memories of my childhood and many many trips to the lake flooded my brain. My mom would pack a picnic basket and we would spend the whole day playing in the water and the sand. In June of this year, my dd went to a birthday party at the lake and she had so much fun. I can't believe we don't go the lake more often. We enjoyed some quality family time and time with friends. Come to find out if it wasn't for that lake being so close to town, we may have never met them at all. Now I don't believe in destiny or coincidence, but I do believe that God has a plan, and everyday I am reminded of how He orchestrates my life and the lives of others.

Sunday I drug my tired body out of bed and walked across the long street to church. I was so glad that I fought the urge to stay in bed because the woman who wrote me a letter about her cancer was in town visiting her mom and it was so great to see her and hug her. I think we are like little life jackets for each other. Just the few minutes I had to speak with her again rejuvenated my body to take on yet another day. Isn't God's plan fantastic?

At the doctor on Tues. he asked me sort of in an afterthought, "any nightsweats yet?" As I thought about it and shook my head, "no", I made a mental note of my symptoms. Night sweats = gone, hacker cough = gone, weight loss = unfortunately gone, wait a minute...does this mean I am going to be cancer free? I don't want to get my hopes up too high but it is certainly encouraging. I mean the night sweats and cough have been replaced by hair loss and tummy aches due to the chemotherapy, but when I am done with treatment those things should be gone, too. I am nervous, excited and anxious to have this PET scan so I will know for sure. I am not a very patient person and it is taking a ton of energy to wait.

This article appeared in the papers today.

Montrose Rallies Around Hometown Cancer Victim

“My world had been turned upside down. My thoughts are scrambled. I feel completely fatigued yet full of curiosity. I am still in denial that anything has really happened.”

It was just a pesky, nagging cough. It was just another summer day. It was just a routine visit to the doctor’s office. But in one flash of the CT scanner, that cough, that day and that doctor changed a life forever. Rani, a lifelong resident of Montrose, was diagnosed with stage IIb Hodgkin’s Lymphoma this past June and is now fighting to beat the cancer. She has undergone surgical removal of a portion of her lung and an enlarged lymph node and is being treated with aggressive chemotherapy. Yet she considers herself lucky, even blessed.

“One of the things this whole experience has done for me is put into perspective where my priorities should be. I understand how important my family is and how blessed I am to have children and brothers and sisters, and let's not forget friends...the superglue of my life.”

Rani is the wife of her high school sweetheart and the mother of two children. The community of Montrose and many people from surrounding communities have pitched in to help the family with meals, errands, babysitting services and moral support. Rani’s form of cancer comes with an 80% survival rate, but she firmly believes her odds are much higher thanks to a wonderful support system and an unwavering faith.

“The people around me are my strength, they are the force that drives me to want to be BRAVE and beat this disease. I can't make it without them. It is so important to have friends and family and neighbors and people who care. My community or TOWN (tons of wonderful neighbors) is amazing and so supportive.”

In an effort to help the family wade through the medical costs, living expenses and lost days at work, a committee of friends and family are organizing a benefit for Rani and her family. “Rally for Rani” will be held on August 26 at the Montrose Softball Complex and was designed with the Gordon family in mind. There will be a kids’ carnival, bean bag tournament, pork feed, silent auction and a dance. The event will take place from 3 pm until midnight, and all proceeds will go to Rani, her husband and their children.

“And even now hours after chemo, when I am tired and sick and a little crabby, I want everyone to know that deep down inside me in the essence of Rani there is a pilot light of optimism that will never be extinguished. The power for this fire comes from my Lord and Savior, Jesus Christ; and from my handsome hubby and my strong and amazing mom and my beautiful children and my family and friends.”

The “Rally for Rani” committee is hoping for an overwhelming turnout, not only as a testament of friendship and support for Rani, but as a showing of small town solidarity and compassion.
“This is what it's like to live in 'the village'. I will never leave this tiny slice of heaven.”
(All of Rani Gordon’s excerpts were taken from her blog, with her permission.)

Chemotherapy, Round 3 (nine more to go)

The iron pills must be doing their job because my hemoglobin was up to 11.7 today (yeah!). Doc is very happy we are on schedule and is anxious to see the PET scan in 4 weeks or so. We may start radiation right away if I need it, instead of waiting until January. Next chemo. is scheduled for August 29th.
My new phrase is going to be, "Did I tell you........?"If you wonder why please refer to my previous post. My dh and I were thinking today, if we did this all over again we would schedule chemo for later in the week and spend the day garage saleing (sp?I wish this blogger had a better spell checker).
Is it possible to be in a packed room and still be cold and lonely? The clinic was full today and I felt like I was on the outside looking in. My age brings the average patient age down 20-30 years which may explain my loneliness. In the waiting room I watched a middle aged son walk his mother (who was wearing a fabulous head wrap) in to the receptions desk. About 30 minutes later I matched the mothers face to two other young women entering the clinic. They quickly found each other and embraced and I thought to myself, it must be her first time here. Many more faces slowly filled the room, a husband and wife, an older man with his daughter, a middle aged man by himself, a few more women in hats that matched their shoes or their shirts. Everyone in their own stages of battle with the big "C". I played 'guess the patient' as they kept coming in the door. The women who had lost their hair were the most obvious. Then there were the ones with a port already accessed, the tubing coming up and out of their shirts was the giveaway. Next, came the harder ones, the physically fit 'if you saw them on the street you wouldn't think they had cancer' ones. One lady had a tube coming out of her neck. Another was in a wheelchair obviously recovering from surgery. I wondered if they looked at me and thought, "poor young woman", or if they were still reeling from the effects of finding out they, too, had a free ticket to the cancer club.
I couldn't help but feel like I had graduated from stage 1 (all about me) to stage 2 (there are so many of us) as I sat down in the now familiar laminated easy chair. The family to my right had just found out in the last 24 hours that he had lung cancer and his wife was frantically calling everyone on the cell phone and asking the nurses and doctors questions and I thought to myself, "I know how you feel." The woman to my left said to me after I came back from the rest room and caught her eye, "You are much too young for this." I smiled and my eyes welled up as I thought to myself, "I have the best chance at beating this, too." She sat with a friend and talked about her chemo schedule being interrupted by her recent cold and how she has been coming for treatment since January of this year. I watched as the patients came and went some needing long treatment and some short ones. Some said, "see you ladies tomorrow" to the nurses as they left. I felt so helpless. So many people are suffering. How dare I complain about my tummy aches and fatigue? I am one of the lucky ones. Thank you dear Jesus.

Did I mention that chemo causes memory loss?

My memory is not as good as it was in college or my first year of teaching. In fact, my memory has been decreasing in power for few years now. I try to write everything down and my fridge is full of little papers and sticky notes with phone numbers and lists. Every time someone brings a dish I put their initials on the dish so I can remember who to return it to. I was scared silly when I read that memory loss is another symptom of chemotherapy and I joked about it with family for the first week. So this week when I goofed and dialed the wrong number I should have remembered to use it as an excuse, but I was too embarrassed and....I forgot.

My dd has been wanting to go to the store for me. Her 8 year old cousin was here last week and we needed something from the store (it's less than two blocks from my house). So she sent the 8 year old up to get it. Well, my dd just thought that was really cool and she has been bugging us to let her go and get one thing from the store. Yesterday, dh gave in and let her walk with ds to get a Sunday paper. He watched her the whole time, he had to walk across the street to the apartments on Main so he could see them go into the store. Okay, well I wanted to warn the store, right? So I quick dialed the number and a woman answered "Hello?" and I said "is this the store?" "uh huh" she said so I told them who I was and that my 4 year old was coming to get a paper. Then I hung up. Dd and ds made it back safely and they were so proud of themselves and I secretly knew it was the phone call that clinched it. Then about a half an hour later the phone rang and it was a local number, a woman said, "Rani, we are going to the cafe now, so we won't be home." I said, "huh?" and she hung up. I called her back and said, "Did you mean to call me?" She said, "Yes, you said your daughter was coming to get the paper and she hasn't shown up yet, I just didn't want her to knock on the door and have no one home." I had called the wrong number. Sigh.

By the way, isn't it only in the 'village' that you can call someone and tell them you need the paper and they don't even blink an eye about it? Tons Of Wonderful Neighbors= town, another prime example.

Trying really hard not to sweat the small stuff.

We had a grand weekend. I have been funk free for almost 3 days. Last night after church we escaped the wrath of parenthood for better than an hour. My dh took me for a motorcycle ride and we visited his uncle's pumpkin patch and crashed a friend's party. It was loads of fun. We almost ran out of gas on the way home, in fact we thought we did but my dh found the reserve button on the gas tank, whew!

Tonight the Muckdogs (my dh's amateur baseball team) cemented their place in the quarter finals of the state tourney. YEAH! We play again on Thursday evening at 6pm.

I only took one child to the game. My dd has been a turkey lately and I thought a night off might convince her that when I ask her to behave I mean it. After a whole evening away from her, I prayed with her and asked her if she wanted to go to the ballgame next time. "I don't want a brother or a mother or a father anymore," she said "they make me crabby." It is really tough, getting along with everyone. We have to make sacrifices. I stayed for the second game tonight so I could spend some time with my dh, even though I was cold and tired and would have loved to be wrapped up in a blanket in my living room watching, "Big Brother". Life is full of little inconveniences. Every day we choose which ones to suffer through and which ones to fight off.

This experience has made it so much easier for me to let those things that don't really matter in the whole scheme of things just roll off my back. I love what the parent of one of my preschoolers used to say about her children, "Choose your battles." Know when to give in and when to fight back. If my child will be harmed or may harm others, I better intervene. If he or she is just being goofy and no one is getting hurt, I may think twice before trying to stop the annoying behavior. Depends on how much energy I have, and lately I haven't had a whole lot. At the baseball game last week it seemed like every time I turned around my child was screaming or crying and I became really agitated. It's hard to not sweat the small stuff when you are exhausted. In the end, does the small stuff really matter? I can think of only a few awful times in the last 4 and a half years of my daughters life. The memories of the good times are much more plentiful. When we are standing at the pearly white gates of heaven is God going to ask us why we clicked our tongues for 20 minutes even after our mom asked us not to? I find it hard to believe that He would do that. I think he has already forgiven me for that. So, I told my daughter that I missed her sweet face at the ballgame, as did her friends and family. I told her I was sad but I have forgiven her for her behavior and I want her to come along with us to the next game. Is that a guarantee that she will be on her best behavior for the next 4 days? Nope. But I am not going to let it ruffle my feathers. I have bigger fish to fry.

Happiness is Homemade

"Three grand essentials to happiness in this life are something to do, something to love, and something to hope for."- Joseph Addison

Yesterday felt as close to normal as possible. I woke up with an urge to clean (finally) so with my family's help we did the floors and the bathrooms. It was nice to be able to walk on the floor without picking up hitchhiker crumbs. I even did some laundry and hung it out to dry, it took all day because of the humidity, but nonetheless I felt like I did something worthwhile. While the kids were napping I attempted a new cereal bar recipe only using the microwave, I overcooked the marshmallows and my bars feel like rubber balls. So, for the time being, cooking is not my forte'. Funny how something that gave me such joy a few months ago can be such chore and very easy for me to just avoid lately.

Dh was glad that I was distracted for a few hours so he could get some much needed "bike" time in. He has been trying to fix up an old motorcycle and he finally got it running. This one is even big enough for me to ride on. I was sort of angry about the motorcycle when he first started the hobby but now I realize that he, too, needs an outlet and as long as it doesn't involve him killing himself I shouldn't moan about it. He rode around for hours yesterday and when he finally came home, he was happy and that made me happy, too.

Last night, after a delicious meal and a glass of red wine, we had some visitors from the Colony. The girls are so nervous when they see me, I can feel their little bodies shaking when I hug them. They brought me some garden goods and today we are attempting to make a few quarts of salsa. I hope that in the months to come I don't forget this warm feeling of comfort that comes from being loved by my friends and neighbors. I can't believe the outpouring of support that comes from everyone. It never ceases to amaze me. Every day something happens that makes me thank God for the blessings He has given my family.

My happiness is made up of tiny little pieces - the little soon forgotten kindness of a smile, a short but pleasurable conversation, a heartfelt get well wish, these mixed with amazing charities like hot homemade meals, anonymous gift certificates and baked goods, and a benefit planning committee make this whole experience worth every funky moment. Serenity is not freedom from the storm, but peace amid the storm. God promises a safe landing, not a calm passage.

Many people have told me, "God knows your strength, He believes you can get through this." I do believe, with all of my heart and soul, that the will of God will never take me to where the grace of God will not protect me. He does that for each and every one of us.

(thanks to my wonderful, amazing sil for the photo :))

If you can't kick the funk, ignore it.

We made an impromptu visit to the campground in Yankton yesterday. Dh's sister was camping with friends and we sort of invited ourselves. We brought the boat and the kids went tubing. They had so much fun. I am so glad we decided to go. I was able to visit with family and forget about the funk temporarily and when the funk got the best of me I napped in an airconditioned camper, now that's living. We packed so quickly, I forgot my camera. Which means these memories will be only in our heads and hearts.
I was too scared to get in the water, my fear of infection wins out most days. My ds had a fever after the boat ride and I didn't hesitate to call the doctor for meds. I told the nurse it's two for the price of one week, she didn't laugh but called the script into the pharmacy anyway. I am sure he caught what my daughter has.
I forgot how great the outdoors are. It was really nice to sit and watch the water. There was a lot of shade and a small breeze. It was pretty humid and later in the evening I was pretty sticky after playing a game of bean bags with my family, but it was well worth it. I think it's the only exercise I've had since they made me take walks after surgery. I am so out of shape, that's part of the reason swimming scares me. Normally I am winded after being in the water. I can't imagine trying to swim in my current physical position. Yet, being the athletic studette that I am I was able to get the win for my team in bean bags. I came through in the end and sunk two needed bags in the hole. The second game has a different ending, though. If you ask me, it was getting too dark and I needed to end the game, that's why I chose to put one on the board after the other team went bust...yeah, that's what happened.

Rally for Rani

In a funk; funkity funk, funk, funk.

We in the cancer community refer to the weeks without treatments as 'gap' weeks. For the most part these gaps in treatment are supposed to be the best times, the most enjoyable for us because the medicine is all the way in and working really hard to get us better. People who are on vigorous chemo schedules often travel in between treatments, they may plan parties and really just try to enjoy themselves before their next treatment.

Because I am still a newbie, I haven't really been able to schedule myself around my treatments. Last gap week on this day, I was excited to be going on a trip and maybe that was enough of a distraction to keep my spirits high. This week I feel...well, in one of the blog's I read he described it as the bleo-blah's. The bleomyacin is one of the drugs in the ABVD that I am taking and one side effect is depression, or the blah's. All week, I have been down. Until today, I couldn't even find the motivation to write which is pretty much the extent of my existence. It's like a bad mood, only nothing improves it. One of my dear college friends usually describes it as a funk.

I am in a funk. I tried food, chocolate, vitamins, drugs, t.v., ipod, writing, sleeping, not sleeping, walking, talking, reading, showering, playing with my kids, surfing the net, petting my dog, and sitting outside; but I just can't shake the funk. It is stronger at times like last night when I finished off a half of a bag of Doritos, which I normally do not like, candy and pop while watching bad television till 2 am after popping a diazepam and hoping to get some shut-eye. Sometimes I can ignore it long enough to have a conversation or respond to an email. It's got to be something about the distraction from it that keeps me 'up' enough to survive.

When in a funk I tend to focus on the negatives and ignore the positives. I even neglect the very things that could help me get out of the funk like good nutrition and rest. Like right now, for instance, I should be sleeping. But I can't because the funk is in my head and it makes me crazy. The funk makes me whine about my hair loss when I should be happy to be alive. The funk makes me complain about my children and their little personalities, when I should be thankful that I was able to conceive. The funk makes my fuse short with my husband when I should be thanking him for putting up with me. The funk makes me think of stepping into the street when I hear the loud trucks whiz by my garage. The funk makes me feel tired, lonely and sick. I hate the funk.

Dear Lord, please take away the funk, help me to overcome the funk, give me the strength to rise above the funk. You have given me so many blessings, Lord. Thank you for words to speak and write with, thank you for people to talk to. I am so undeserving of your blessings. Thank you for friends who call when I need it the most, for strangers who offer so much to us; who open their hearts and give the food from their tables, who offer to watch my children when I can't find a sitter, who offer to can my vegetables when I would have let them rot. Thank you for friends who sacrifice time and energy to provide for my family, when I cannot. Thank you for communities of people who care about their neighbors. Thank you for teaching us how to love each other. Thank you for handwritten notes and packages in my mailbox. Thank you for wonderful small gifts and amazing survivor stories. Lord, give me the courage to climb up out of this funky disposition and enjoy the blessings that I am not worthy of receiving. In your Heavenly Name I pray, AMEN!

Baseball, Strep Throat, and Ice Cream Delights

Late yesterday we had a surprise visitor and my kids were so excited to see Grandpa. They must have played ball for an hour. My ds ate 3 apples from our trees in the backyard because Grandpa kept picking them. These are the memories I hope my children will keep forever.

My dd has strep throat. She has had fevers for the last couple of nights and we just couldn't keep them away. She will be on antibiotics for the next few days to help her fight that bacterial infection off. Doctor says I will be fine, just wash wash wash my hands.

I put a pony in today and I had to wrap the band around several times, usually I can only get it two or three times. I estimate that I have lost about 1/3 of my hair. It is really thin. But, there are no obvious patches although you can see more of my scalp, now I can make a cool part and have people actually see it. I hate the fact that I am hung up on the hair. I spent most of yesterday doing dd hair and we even put tiny pony tails in my ds's, he looked so goofy, but he wanted them.

After the doctor visit this am, we went to the pet store to replace "Cinderella" the fish that died this weekend. We had her for almost 9 months, so we are hoping that this one will live as long or longer. We made a vow to not use water from the dehumidifier this time:(

My Dh's sister is coming today from out of state and we are excited to see her. My daughter loves her cousins dearly and thoroughly enjoys bugging them to no end. It will be nice to visit with her tonight and she would like to make dh's ballgame tomorrow in Mitchell. It's gonna be a late one and I have decided to get a sitter for the kids so I can enjoy the game and not have to worry about kids up way past their bedtime. Of course, I haven't asked anyone yet, so I may end up not going at all.

Last night the feast was amazing and the dessert made me gain 5 pounds. I think that is why I am feeling one step behind today. Tomorrow is going to be just as bad, because I am finishing that divine delicacy this evening. It has ice cream sandwiches and whipped cream and chocolate and caramel and toffee chips and, well, if it hasn't made your mouth water by now you aren't human.

To Clog or not to Clog

that is the question.

I'm not afraid of scary movies anymore.

My dh and I put the kids to bed at 830 last night and they stayed in bed. We took advantage of the quiet time and put in a movie that dh had seen parts of and wanted to see again. It was a vampire/bounty hunter type thing with special effects to knock your socks off. I LOVE scary movies. I am usually on the edge of my seat and enjoying the rush of adrenalin when I just can't take it any longer. But, last night (maybe it was just the movie) I had no reaction. I even yawned and started to nod off. I guess when you are concentrating on staying alive, scary just isn't the same anymore. We went to bed before 11 and by 3 my dd was up crying that she was hot. My dh got her some tylenol and I kept a safe distance from her with my heart in my throat the whole time. I don't want to be sick, but I wanted to comfort her. I took her temperature, 102. My doctor said if I have a temp. of 100.5 I have to go in BEFORE an infection has time to start in my rundown body. I put some cool cloths on her while dh rocked her in the chair. She was shivering and I was shaking with fear. I washed my hands several times, feeling extreme guilt and jealousy that I was not the one holding her. The fever passed and she fell back asleep and this morning she is fine. But I was awake trying to figure out how I am going to make it 5 more months without catching something. I can't believe how scared I am. It's pathetic. It makes my skin crawl. Wait, no that's just the hair falling out and getting caught on my arms...

No more Pepto Bismal Pink.

I have had enough complaints about the pink background and so I am ready to grow up and become a minimalist so that those of you who are working at the bank and elsewhere (you know who you are) can read it without setting off an alarm.... good luck perusing the web on the payroll without getting caught. AND, thanks for reading :)
Don't worry, I can always change it back... I am such a people pleaser.

I think I'll be a hat girl.

For the past few days my hair has been falling out. I have to admit that I never really thought I would lose it all. I thought that I would be 'the one' that didn't lose her hair in chemo. I was wrong. I am sure that in the next few days my hair will be mostly gone. The thing about this cancer is, my bald(er) head will be one of the few indications that I am sick. Sure, I have battle wounds (scars) from the two surgeries that I am not afraid to show off. For the most part those are covered, once the hair goes, it will be painfully obvious that I am sick. I was speaking with a dear friend's mil today and she said when she was undergoing chemo for her breast cancer, her daughter was a freshman in high school. Her daughter kept telling her to just get up and do something. Later, she explained to her mom, that she wanted her to do normal things instead of resting all the time, she thought perhaps that would 'help' her get better. Every day people ask me, "how are you?". Every time I hear the question I wonder silently, do I tell the truth or do they want me to just say, 'fine' so they can go on with the day? It is so hard to describe what it's like. I am learning about how I am coping every day. Some days go by pretty quickly and without too much suffering. The next day may drone on minute after minute and I feel queasy and sick and tired. Every morning I wake up and wonder, "how will today be?". Meanwhile my dh and children have to continue to live their lives. I often wonder if my ds thinks I am worthless and lazy because I cannot play rough with him or push him on the swing or carry him anymore. My dd, I think, understands my disease a little better. We had the hair talk already, "Mommy's medicine is really strong and she needs it, but it makes her hair fall out." I try to tell my dh that I am tired, but then I can't sleep and he sees me typing and flipping channels all night. Does he think I am lying to him? How can he really understand what I am going through? How can he not be angry with me for taking away his summer and his night's out with the boys after the ballgames? He has much more patience than I do. I don't think I would be able to put up with him if he was the one who was sick and tired.
The fact of the matter is, my bald(er) head will give a face to the disease that is inside of me. It may bring on more questions from people and I am sure a few sideways glances. But I have never been one to be very quiet and bashful, so I imagine myself removing my hat to reveal my head to; my friends; my neighbor; or the class I am subbing for. If I can help one person, big or small, understand cancer a little bit better and not be afraid of people who are suffering, than I think the whole experience will be well worth it.

A typical moment in 'the village'

I was walking to the concession stand at the ballpark Thursday when your typical 5 year-old, could be any one of a dozen children waves to me and says, "Hey Rani, how are you feeling?". I answer, "pretty good." He replies, "glad to hear it...." and keeps on running. That's what it's like to live in 'the village'. I will never leave this tiny slice of heaven.

Crash, Bang, Boom!

Friday hit me like a Mac truck. I was going along just fine on Wednesday and Thursday minding my own business. I even made it to my husband's ballgame on Thursday evening. For those of you who do not live with an amateur ball player, August is baseball season. District and State tournaments and games almost nightly. My dh has been such a peach taking the kids with him to every game and letting them run amuck while other player's wives keep an eye on them. It all stems from "the village" philosophy. I know that even without the summer we have had, my kids would be safe at the ballpark, next year it will be my turn to be the mother hen, I promise.
My dd was so proud to have 4 quarters in her pocket when she came home last night. I said, "Wow, did you get 4 foul balls?" my husband snorted and said, "Nope, she just smiled and the boys gave her the quarters." I call that 'using your resources'.
Anyway back to Friday, I woke up with a massive headache and was back in bed shortly after breakfast. I took another nap before and after lunch (that makes 3) and then had a few visitors in the afternoon. I took yet another nap (I think it would make more sense to call it passing out, I can't remember even laying down) before supper. We had a wonderful catered meal with the most delicious dessert. My dh took the kids for a few hours so I could visit with a dear friend. I took some medicine and it made me feel like my skin was crawling. It was extremely uncomfortable. I tried to sleep while the rain was pounding on the windows and I think I got a few hours squeezed in before daylight. My husband is down trying to dry out the field and, you guessed it, he has the kids so I can rest. So, you know, I am typing. I am singing the Star Spangled Banner today before the games and I am so cotton pickin' nervous, I can hardly breathe. Usually I enjoy this type of thing and I am sure I will do fine, but I can just imagine not remembering the words or running out of breath and mucking the whole thing up. I'll be glad when it is over. I have not helped one bit with this tournament and it's the least I can do to pull a little weight. Hopefully today is a little better than yesterday and I can enjoy the game this evening. My dd equates summer with baseball and when daddy said that the tourney is over today, she cried, "I don't want summer to be done yet!"
Yesterday, I got a phone call from one of the fourth grade children from Orland Colony, she must have begged her father to make the call and the first thing she wanted to know was if the cancer was hurting me and when they would get it all out. The language barrier makes medical terminology almost impossible to explain, so I told her the same thing I told my four-year old. I am sick, the medicine will help me get better, but I am going to have to be sicker first. I may lose my hair and not be able to perform daily duties for a few days out of each treatment, but in 5 months I should be well again! She was content with that and proceeded to tell me that yesterday was butcher day at the colony and they were all very busy. She is very excited for school to start again and scolded me again for not visiting this summer, she said all the baby animals are all grown up now and my kids will have to wait until the next batch to see the babies. She wanted to know if I had 'the central air' in my home and if I was staying cool. Just as abruptly as the phone call had started it ended and she said she hoped to see me soon. I tried to say goodbye but the dial tone was already ringing in my ear and I could not help but think she was already busy cleaning or taking care of her younger brothers and sisters. The simple life, taking care of what's really important.

The beginning of Ugliness...TGFB (thank God for brownies)

Last night while I was trying to sleep I kept thinking about whether today would be a good day or a bad day. I spent a stupid amount of time thinking about what may or may not happen to me instead of sleeping, which is what my body really needed most. It's odd, how I feel so completely exhausted, yet I cannot sleep. I try and close my eyes and shut off my brain, but I just can't fall asleep. My surgeon said he would get me some Ambien if I needed it. I may have to call him if this no sleep continues. I don't like using the diazepam because it is a muscle relaxer and I don't like not feeling in control of my body. I have taken 2-3 naps today for about an hour at a time, but I am still not feeling rested. I have felt pukey and my stomach has been cramping all afternoon. I don't feel hungry and it is such a chore to eat. I ate a lot of fruit and bread this morning and for supper we had a feast which I enjoyed and haven't had any repercussions from yet. Then I had cup of coffee and a frosted brownie for dessert.

This morning, in the shower, I looked down to find the floor of the bathtub swimming in hair. Fortunately, I have extremely thick hair and most people may not notice the thinning right away. It feels wrong to be focusing on such a vain symptom, when my life is at stake. But, as I looked around the clinic yesterday, I noticed the women with hats and scarves and couldn't help feeling scared about losing my own hair. They look so naked. I wonder what I will look like? They passed out a magazine at my first chemo appt. with all different kinds of wigs and hats and even makeup tips for when your eyebrows fall out and the circles start appearing under your eyes. I have never felt like I was a beautiful person, but I know that soon my looks will rank much, much more nearer to the ugly side of the spectrum. I pray for the strength to face the world and hope that my inner beauty, wherever it may be, will rise to the surface for the next few months and help me get through this.

Praise the Lord, O my soul,
and forget not all His benefits-
who forgives all your sins
and heals all your diseases,
who redeems your life from the pit
and crowns you with love and compassion,
who satisfies your desires with good things
so that your youth is renewed like the eagle's
Psalm 103:2-5

Why Are You Optimistic About the Future?

As a lover of words and the way that people can manipulate them to make phrases and sentences that move me when I read them, I often come across a piece of writing that gives me goosebumps. I feel like sometimes I just don't have the right words to say what I really mean. Today, after my dh induced nap I was reading the news on my most favorite news website ever and I came across this paragraph. I have included the link above so that the author can get full credit, his essay is an amazing story of his life and I would encourage you to read it in its' entirety. But I just had to cut and paste the part below because it says exactly what I have learned in the past few weeks while fighting this disease. And even now hours after chemo, when I am tired and sick and a little crabby, I want everyone to know that deep down inside me in the essence of Rani there is a pilot light of optimism that will never be extinguished. The power for this fire comes from my Lord and Savior, Jesus Christ; and from my handsome hubby and my strong and amazing mom and my beautiful children and my family and friends. EVERYDAY one (or several) of you provide me with the energy to keep that light burning. I know that it will continue to burn eternally through prayer, words, food, gifts, cards, hugs, kisses, or just your presence in my life. Stop rambling, Rani, and let them read.....

I am optimistic because I have learned that what endures will not be our possessions, or our careers or even our reputation, because in time those will all fade away, but how we live our life, the good things we do - the acts of kindness and the sacrifices, large and small, for our family, for our friends and for complete strangers, those things will live on in ways that we can never imagine. Every one of us has the opportunity to make a difference every day of our lives.
And it's never too late.
Leonard S. Joy

Chemotherapy, Round 2 (ten more to go)

Two down, ten to go. Today went well. We were in at 9 and out before 1. On the way to the clinic I thought I had pretty much decided to cut off my hair and donate it to Locks of Love if it was long enough. But after talking to the nurse I figured it may be best to just wait it out. She said short hair is really messy and gets in your food when it starts to shed, with my longer hair, she said it may just thin a whole lot and get really patchy ugly and I can wear hats or scarves over it. So I don't know what to do. I am just going to wait and see.

We almost didn't make it on time. The construction around the hospital blocked every road completely surrounding the clinic. Someone actually moved one of the road barricades so we could get through, it was nuts.

My hemoglobin is really low, so I go some iron supplements to take every day. Other than that I am tired. I had to pee so much during the chemo that one time I stepped on my iv and almost pulled my medicine out of my chest. I am such a dork. Dh was right there with me or I would have pulled the whole needle out. YIKES. I am tired and he is screaming at me to take a nap, so I am signing off for now.

Powering up for Chemo #2

We are scheduled for my second round of chemo today. I feel tired, but STRONG. All the love and the prayers from my family and friends are powering me and I will be brave today. I will try and post later this week to let everyone know how it went. Thanks for all your support and your kind thoughts. We had a super delicious meal last night with vegetables that tasted so yummy. My daughter ate all the chicken out of the stir fry and I ate all the veggies. We are so lucky to have such amazingly wonderful friends. There may have been a plate of brownies delivered last night, too. The jury is still out on that one; until they can prove I ate the whole plate I am not saying anything.

Tales of a Texas Trip LAST DAY Maypearl and the Bonds that TIE us together.

My beautiful cousins and I visited the tiny town of Maypearl on Sunday.I felt like I had died and gone to heaven. It was one street long and reminded me of home. We shopped and visited and had a grand time. We had to get back home for the family reunion, otherwise I may have spoken with a realtor about purchasing a home there.
The afternoon went by way too fast and before I knew it we were all hugging and crying and saying our goodbye's. I had such a wonderful time and didn't want to go home. My mom and I and my aunties and cousin stayed up almost until we had to leave for the airport. We had some really good conversation, but mostly it just felt good to be in the presence of family. It's really hard to describe what I was feeling. I don't get to see my mom's family very often. Before this, I feel like I may have taken for granted the handful of times that we have shared. Now, more than ever, the bonds that tie us together are so strong. My cousins and their beautiful families and my aunties and their amazing stories and their unconditional love for each other is a force to be reckoned with. I watched my mom hug her sisters and her cousins and my eyes welled up, it was sad to know that we had to go, but I was also happy - so intensely joyful that I was a part of this family that I could not hold it in me. I had the time of my life, but there will be more times like this. I am going to take my whole family down to visit again. I am not going to wait very long to experience that again. It is much too valuable to lose.
Our plane was scheduled to leave at 6 and we had to return the rental car so we left my aunt's house around 3 am. The highways were busy, even at that time, and the air was thick and hot as we stopped to get gas at a tiny station with 24 hour pumps. As we arrived at the airport nearly an hour later we tried to check in and were informed that our flight had been cancelled. We were put on a 12 noon flight which we complained about until the United representative got us on a 730 to Denver. We had a four hour layover in Denver and as soon as we arrived we checked the monitors and realized there was a 10 am flight and we high tailed it over to the gate to see if we could get on. The man told us we had to have 2 hours to get our luggage changed from the 12:00 flight to the 10:00 one, so we shrugged our shoulders and walked away looking for a nice soft place to rest our sleepy heads for a few hours. We boarded the tiny plane hours later, tired and hot and ready to be coming home. The flight was only an hour long and as we approached our corner of the state I started to recognize the familiar roads and small towns that I have lived in or near my whole life. The view from above is a remarkable one. Little squares and rectangles and circles of land that are stitched together by straight and curvy roads, highways, and lakes. It reminded me of a homemade quilt that has uneven patches and is a little old and worn, but still amazingly beautiful. It was home and I missed it. We stepped off the plane and the old familiar South Dakota wind almost knocked us over. It was 99 degrees with 20 mile an hour winds. Home sweet Home. We walked (it felt like such a short tiny walk) to the baggage claim and waiting so patiently for us on a metal cart was our luggage that had made the 10:00 flight without us.......sigh.