Chapter 26, June 21, 2005 The Two Year Mark

Chapter 26, June 21, 2005 The Two Year Mark
Today marks the two year anniversary of my liver metastasis diagnosis. There are no bells and whistles going off, just a normal sunny morning full of promise. I make my way to the kitchen for a hot cup of tea; grab a blanket and head out onto the deck for a conversation with God and nature. My tea cup rises to the sky as I make a toast, "Thank you for the past two years of life and here's to at seven more." I don't like to be greedy, but that is the least amount of time that I need, more would be better, but seven is necessary. Did I actually think I was going to die two years from the date of my diagnosis? Not really, that is just a reality that is almost too difficult to wrap your head around. Some people however do die almost exactly to the date they are given for a terminal finding. The time frame is one that I use as a marker, or a number to beat, that's all. The Dr. did say that people with my specific condition live for an average of two years. Some live longer, some are not so lucky. I am one of the fortunate ones.
Cindy, as always, is here for our evening anniversary celebration along with Mike and the girls but we've added another face, Alex's friend Jordon. KFC and beer are on the menu as well as healthier options for those who want them. There are joyful looks on everyone's faces as we make it around the table expressing thanks. Happy tears are a welcome addition to all of the gratitude we feel. I express my thanks to my family and friends for supporting me through this journey and vow to be here for next year's celebration. We laugh and talk for a few hours and forget why we are all gathered in the first place.
The kids are all two years older and a little wiser, how could you not gain wisdom living with such frightening news. Katie graduated from the 8th grade, thankfully. Junior High was not easy for her socially. I'm going to go out on a limb and say that Junior High is not easy on any girl. Katie recalls sitting at home alone for the last three months without any friends. Something she did, something they did, who knows? Hard lessons from life help us grow into the person we are to become. She is now on her way to the 9th grade in the fall and hopes for a more positive environment.
The bone metastasis looms in the back of my mind. I am still on Capecitabine, but that will soon end as I am about to start a clinical trial for patients with stage IV Breast Metastasis. Unfortunately I'll lose my hair again. Having hair is so nice. People can't tell that I am sick, it keeps my head warm in the winter and I can pull it up in the summer, really nice. It would be great to keep it, especially because Mike and I will be celebrating our 19th wedding anniversary in a month and I would like to look good for that. We'll see how it goes.
The Clinical Trial chemo starts today. I've been through this drill a few times before, but you never know how each chemo will affect you. It is a clear, warm Friday morning, my treatments are always on Fridays so I can use the weekend for the sickest times and start to feel better for the work week. Mike and I make the familiar trek to the Cleveland clinic to see Dr. B, my favorite Oncologist. He's just a hard working Dr. whom I trust. His nurse Bobbi is also a bright, hard working woman who is always on the ball. She is caring and efficient. My questions are welcomed and knowledgeably answered by her.
Labs, blood work, are drawn to ensure my counts are all good prior to having a treatment. I then settle in for roughly four hours of infusions. The day is long and tiring as they always are. According to my past experience with other chemos, I'll start to feel poorly this evening, be at my sickest tomorrow, feel slightly better on Sunday, and slowly progress to feeling a little better each day. By Thursday of the following week I am back to what is "normal" for being on a drug therapy.
Purposely, I schedule my Yoga and exercise classes on Monday and Wednesdays. This way I am forced to get back in the game right away Monday a.m. There is no time to lie around and be sick. Because of my dedication, calling in sick is not an option unless I'm close to death, which is rare. Having people waiting there, counting on me being there, gives me all the motivation I need. My sickest days, well those are the days my class dreads because I purposely make them more challenging just to prove to myself and them that I can do this.
My hair doesn't make it to my 19th wedding anniversary. I was rockin' pointed silver lamiae shoes, black slacks, white blouse and unfortunately a black and white scarf on my head. Not my best look but I put it all into a good perspective and headed out for a fun evening with friends Debbie and Randy. They are also celebrating their wedding anniversary. Dinner out in one of Cleveland's nicer restaurants was stimulating, there was good food, wine and great people watching. I love the excitement of a trendy, faced paced restaurant where patrons are dressed up for the evening. I could just sit and watch people all night, probably because their lives seem so much more interesting than mine. At our table there were conversations of our weddings, out trials and tribulations over the years and how happy we are to have made it this far in wedded bliss, or to be realistic we were all just happy to have made it this far. Marriage is a challenge. After dinner we headed out to a movie, Bridgette Jones' Diary. This was a good way to end our 19th year.
We also celebrate Frankie's birthday this weekend. She was born on the 1st of August and we were married on August 2nd. Frankie is 11 on this birthday and will be going into the 6th grade. After enduring her own social issues last year we are hoping for a fresh start.
The school year starts today! Katie made the freshman volleyball team as the libero, she plays only in the back row being the first line of defense for the serve. She is by far the littlest one on the team. Katie stands 5 feet tall on a good day, but she is fast and aggressive. Frankie is also playing volleyball for her 6th grade team in addition to being on a gymnastic club. She is a busy girl. Alex is a junior and dances 4 days a week for Absolute Dance Company; this was the path she chose after not making her Junior Varsity volley ball team. They dance to the the Hip Hop beat which she has easily taken to. Our kids' activities keep us moving and we enjoy watching every single competition they partake in. That is all I care about at this point in my life, spending as much time as possible with them.
Chemo continues to be tolerable. My white blood counts, which are your body's cells that fight against disease, have a hard time coming back up after my last treatment. If they get too low they will not administer treatment, it is too dangerous because your body can't defend itself against even the common cold, or fever. Dr. B wants me to go on a drug called Neulasta, this is a medicine that accelerates the production of white cells; keeping your chemo on schedule. I agree to try it. It is a shot administered 24 hours after chemo infusion.
My first Neulasta shot is this morning. There is a burning sensation as the nurse pushes it in, but it is fairly quick. The side effects for me start shortly after with a sick, hot stomach and bone pain, a lot of bone pain. The white blood cells are manufactured in the bone, hence the bone pain. The pain lingers for three days and then it subsides. The medication is successful in bringing up the white cell count, but I sure hate the side effects and it is very expensive, $8,500 a shot. $8,500 for one shot is what we were initially billed, apparently, once you are billed there are negotiations that go on between the Clinic and the insurance company and the insurance company doesn't always pay what we see on the bill, but it is still outrageously costly.
Drugs are so expensive; I understand that there can be years of research behind bringing a drug to market so they charge a lot to recoup the cost, but if one doesn't have insurance, or poor insurance, they couldn't afford to be sick. I wish there were a better way. On the bright side, the Neulasta shot keeps my chemo on schedule. If your treatment can be administered on time, there is a greater chance for it to work. I am grateful for that.
Advice:
Even though you are sick, celebrate your anniversaries and special occasions, wait for a day that you are feeling your best to do so.
Be sure to always thank and appreciate your supporters. They will keep you going when you feel like you can't.
Set your chemo schedule to what will work best for you. If you are working and don't want to miss too much time recoup on the weekends.
Set yourself up to be motivated by something other than yourself if you don't think you can do it on your own.