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Shining a Light
The Beginning June 2008
Day one of chemotherapy. I'm sitting in the doctor's office as I write this, getting a dose of one of the many chemo drugs I will receive intravenously. I have a port in my chest that was surgically inserted last Friday. The site is still a little sore and so swollen that the nurse's first attempt to access the port with an IV needle was very difficult. It hurt, the pain a shock to my system. I hyperventilated and felt like I was going to faint. I couldn't get my breath under control as fear gripped my body and I started sobbing. Reality was sinking in. Another nurse came over to help calm me. After about twenty minutes, they attempted the needle insertion again-this time successfully-and so the journey begins.
So far today, I've had two drugs intravenously-one for nausea, the other a steroid to help the nausea medication. As I continue to write, I'm currently receiving drug number three, which is one of the chemo drugs. I'll get three more through the IV before I leave today. By mouth, I have already taken a different drug for nausea and two other chemo drugs. One of the oral chemo drugs is actually a steroid, prednisone. This little pill, at the dosage I'm taking, will cause all sorts of wonderful symptoms like water retention and puffiness in the face, weight gain, and insomnia. I'll have fourteen days of this special pill. The other oral chemo drug is procarbazine, which I'll take for seven days. I get to come back to the doctor's office the next two days, rest four days at home, and then report back for two consecutive days next week. A total of five out of nine days that I'll get poked in the chest. Then a week off to recoup and we start the routine all over again.
I'm not the first to go through this, nor will I be the last. The treatments sound daunting, but frankly, I welcome them. All I want to do is kick this thing and start the second half of my life 100 percent healthy. I expect the chemotherapy to do its job, and I will do my job of tending to my mental and spiritual side, and tough it out through the rough days ahead.
* * *
Two days of treatment and I am kind of surprised that I am still feeling okay. I definitely feel like I have drugs flowing through me, but I have experienced nothing yet of the horrible side effects. They tell me to expect that by the weekend. My mom will stay with me for a few days. There is nothing like the comfort of your mom squeezing your hand and holding back your hair while you puke in a bucket.
Speaking of hair, I did get my long mane chopped off this past weekend prior to starting my chemotherapy treatment. Yes, my brown and golden tresses are gone-and in their place is a pretty sassy-looking bob. I must say, I truly dig it. I decided to take charge and go short now. Better to pull out clumps of short hair than long hair-less traumatic, ya know?
Day two of the first cycle is in the books, only three hours in the doctor's office (versus seven yesterday). I have great confidence in the medical team treating me. My doctor is extremely thorough; the nurses are caring and definitely in your camp. And the biggest support at my side is my husband. Chris has been absolutely amazing. The care and concern he has shown for me demonstrates the depth of his love for me. How very lucky I am.
After three days of chemo at the doctor's office and one day at home to recoup, so far, so good. I thought I'd have my head in a bucket or over the toilet. I am tired for sure and have much discomfort in my belly area, but other than that, I am able to get around well and do things for myself.
What a comfort it is to have my mom here for a few days. She lives only across town and doesn't drive, so my brother dropped her off to stay with me. And although she is on oxygen, she wants to help so much, bless her heart. You should see us-I'm busy trying to make sure she's comfortable, while she's trying to comfort me. She can get around pretty easily; she is feisty-that's where I get my spirit. (She claims we're so different, but we're much more alike than she would ever admit.) My other siblings were here as well today. I am being well cared for.
You should see the sanctuary my husband has built for me in the little sitting room of our master bedroom. It is awesome. Chris is a mighty good project manager, and I and my plight have become Project Barb. He envisioned this space-a calming, working retreat-without my input, but he knew such a place would make life simpler for me, and he also knew I would not ask for the trouble. And the trouble people have gone through for me is heartwarming. Chris is a great visionary but needs a team around him, being more of a director and leader and less of an expert in things such as electronics, interior design, and the operation of certain hand tools. I have a new flat-screen TV on the wall, which I can also use as a computer monitor. My brother-in-law, Ken, wired the room, and my brother Michael set up my remote keyboard and mouse. I have a handsome leather chaise lounge, which will serve as my nap couch, my television-viewing couch, and my reading and journaling couch. My friend Tami helped me decorate with pictures and candles to bring some warmth to the room. I must admit, I feel a little spoiled, but that's okay, isn't it?
I cannot find the words to express what I am feeling in my heart for people rallying to my side. One of my dear friends, Jackie, put together a custom Web site where I can post medical updates and, more importantly, journal about my experiences. Another idea born in that splendid mind of my husband's. The Saturday after I was released from the hospital, Chris organized a planning meeting, which included my sister Jeanette, brother Michael, and good friends Alex and Tami. Together they launched Project Barb and have made my transition to this journey comfortable and worry-free, to my most delightful surprise. My sister has been my champion and is managing online calendars for meals and my medical appointments. She is so thankful for the help of Alex, who has rallied the BOTS girls, my book-club girlfriends, to assist with Project Me. (BOTS is "Books on the Side," appropriately named because we frankly do not always read the chosen book-if one is even chosen-so the reading of books falls to the side, as we prefer to enjoy each other's company and drink much wine.)
Okay, I'm tired now. Gotta go.
I am so excited to be through day eight of chemo treatments! No more chemo drugs until my second cycle begins in two weeks. While I still have six more days of steroids to complete this round, I have come out of this first chemo cycle a-okay! I am feeling much weakness, to be sure, and some discomfort with nausea and constipation, but overall, I am not too beat up. Wow!
Oh, and then there were the psychedelic dreams I had the other night. I dreamed all night I was pregnant and trying to save the baby from cancer! And I was so tired in the dream; I just wanted to lie down anywhere to rest. At one point, I was sleeping on the pavement in front of Wal-Mart. Seriously. And two small, black homeless children were huddled up with me trying to keep warm. Yeah, those kinds of psychedelic dreams.
I truly cannot believe this experience. I am met with pleasant surprises every day. Today at the doctor's office while I was receiving chemo, I was seated next to a younger girl receiving iron supplements intravenously. We looked at each other with a nod of acknowledgement, as if to silently say "There's someone young like me." We struck up a conversation, and it turns out she's much younger than me. Twenty-six, to be exact. And she's been battling serious health issues since she was thirteen, half of her life.
Her history started in 1995 with thyroid cancer. Since then, she has had multiple chemotherapy sessions, 75 percent of her small intestines removed, and a host of other tumors and ailments. But she did not seem deterred or deflated by her misfortunes and a life sentence of health challenges. I marveled at this young, beautiful girl who had the face of an angel. This is her life, and she openly shared with me her story. I felt anchored by her, supported and lifted. She has grown up in Colorado and has only her mother, who looks after her. I thought about my situation and how blessed I am to have such an incredible, deep network of family and friends, and my heart ached for her. But she did not know the difference.
Through her sharing, she comforted me. And when she left, I cried, having just been touched by an angel. I hope I see her again soon. I have a feeling I will meet many more earthly angels in the coming days.
* * *
Okay, today my butt is kicked. I didn't sleep well last night. I got up very early this morning and wrote e-mails and did a few things around the house-probably not the best thing to do after a sleepless night. The chemo drugs from yesterday had me feverish. My intestines feel like they're turned inside out. But I am resting well now.
The launch for my Web site looks like a success, with already so many wonderful posts from friends and family! These messages of love and hope truly stir in me the healing power to get me through this challenge.
Been thinking a lot about how the universe opens up and gives you just about what you need and can handle. I'll write more on the topic at a later time. Shutting my eyes for now.
Crazy, Yes-Sexy, No
Happy Independence Day. A good day to celebrate independence from cancer. That is my goal. I just finished watching the documentary Crazy, Sexy, Cancer. My brother loaned me the DVD a couple of weeks ago, and it has taken me several days before I could watch it. I've noticed that it does take me some time to turn my attention to books, magazines, and any other types of information given to me on the topic of cancer. There is a point where your mind bubbles and protects you from having too much information. And then there's the added benefit of having "chemo brain," which causes lapses in concentration and memory. The nurses tell me this will improve after treatment. I didn't think I was too much of an airhead before, but then again ... The chemo is also affecting my vision. Now, this sucks. Two weeks before this whole wonderful journey began, I invested in a sassy-looking pair of Versace glasses. (Can you say "bling-bling"?) Things are a little blurry with or without glasses. This should subside after treatment as well.
So, back to the DVD-it was a great documentary. I cried, I laughed, I was inspired by the story of a young woman facing an incurable cancer. Incurability is not something I face, but I definitely related to her journey. Chris was inspired as well. He wants to buy a Vita-Mix blender tomorrow to start juicing and drinking healthy concoctions like the woman in the documentary. I'm not quite there yet. Trying to find the right balance of food and nutrition is tricky. I have an appetite again thanks to the steroid, but the gas pain is quite unpleasant.
I am a walking pharmacy. Drugs, anyone? I have two new BFFs: Ambien, which I call Amber, and Vicodin, which I nicknamed Vicky. Amber helps me sleep; Vicky takes away the pain. I don't have to reach for Vicky much at all, but I did tonight. The shot I got in my arm yesterday to stimulate white blood cell production is creating some pain in the bones of my lower back-a side effect. Should sleep like a baby tonight with my two BFFs, hopefully sans freaky dreams.
Don't Be a Doormat
Anger. It finally hit me Friday, late in the night-or one in the morning, to be exact-as I was doing some Web surfing for more information about my actual disease. I'm in an advanced stage of Hodgkin's. Did I need to be here? All my doctor visits came flooding back to me, and I went round and round in my head with the conversations and check-ups I had since the beginning of the year. Here on my chaise lounge in the middle of the night, my symptoms were being spelled out to me in black and white on the various lymphoma Web sites-why did my family doctor try to explain them away? I also went back and read the journal entries in the medical update section on my Web page, the first one that detailed my months of ill health. It's there in black and white, too. Sure, each of my symptoms can be related to another, less serious illness, but seeing them grouped all together should have moved my doctor in the direction of at least considering lymphoma. It's all right there! I felt my blood pressure rise, and I got pretty pissed off because seven months later, I'm in stage IV. Maybe I was in an earlier stage back in January when I started seeing that doctor; who knows? And even though the later stage is still treatable and potentially curable, the complication and relapse rates are higher, and I am receiving very aggressive chemotherapy because of the disease's progress.
Some of my family and friends are probably thinking, "It's about time she's mad. How could she not be angry that her doctor missed the boat?" Yeah, I was definitely trying to be a little too understanding of the position my family doctor was in-having to find out her patient of seven months ended up in the ER because she failed to run the proper tests. She even visited me in the hospital, the day after I went to the emergency room, still trying to explain her way out of why we didn't go down this path earlier, and why the enlarged lymph nodes that were detected on a chest CT scan (that was finally ordered by the ER doctor) could be related to other issues, such as mono (which I had in February, one of the few things she diagnosed correctly), and that mono can lead to some more severe infections and lupus is still a possibility; and so you see, don't think that cancer is necessarily going to be the diagnosis; I don't want you to worry. She needed to stop while she was ahead. I know in my heart she had the best intentions for me-our doctors should and do. But, along with this realization of being totally pissed off comes a recognition of responsibility-my responsibility, that I have to push for the right answers. When I had tried to self-diagnose my illness earlier in the year, scanning the Internet for answers to my symptoms, I distinctly remember dismissing the word lymphoma when it came up once during my research. No way I have cancer, I told myself. It's not in my family-we have a history of high blood pressure and heart disease. So even I didn't want to broach the topic of cancer with my family doctor, but shouldn't she have known?
My advice to anyone is this: if you are ill and not improving or only marginally improving, and the symptoms start to become part of your routine and something you just live with-push for answers. Become informed. You have to take charge of your health and not be afraid of the answers. Knowledge is freedom.
The Family Circle
Family. Unbelievable support and undeniable strength. I don't know where I would be without my siblings. We are an emotional bunch. My sister and two brothers are my anchors. They are guiding this vessel of mine, nurturing it, keeping me buoyant, and making me laugh and cry. My sister, Jeanette, is the oldest, followed by Rick, then me and Michael. In age, we are forty-five, forty-four, forty-three, and forty-two. That's right, only one year separates one sibling from the next. Mom and Dad were quite busy making this unique, close set of kids. We are so different and so alike, each of us. My mother is Filipina, first generation. We don't know that side of our family except through stories from Mom. It was my father and his side of the family that really helped to nurture the closeness I share with my siblings today.
My father passed away eight summers ago. We were very close. I was (still am) the quintessential daddy's little girl. Every year since I can remember, there has been a family reunion on my dad's side of the family back East. As we were growing up, these reunions were special to me and my siblings, even though we only attended a handful of them throughout the years. When my father passed away in 2000, his brothers and sisters came to visit him on his deathbed and stayed to attend the funeral service. They were like a huge bear hug to us during that sad time. We attended the reunion the very next year, and it was one filled with high emotion and memories-a touching tribute to my father. Since that reunion, our Colorado clan had not attended another until last year, when the patriarch of Dad's family, his brother Harold, passed away. There was no way we were going to miss that reunion and the opportunity to offer back to Uncle Harold's family the same love and support they had given us years ago when my father died.
Excerpted from Mashed Potatoes and Gravy by Barbara Maddox Copyright © 2010 by Barbara Maddox. Excerpted by permission.
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Posted May 9, 2010
No text was provided for this review.
Posted May 9, 2010
No text was provided for this review.