Monday, May 16, 2011

Side (and front and back) Effects

May 16, 2011: For some weird reason, I lost a post from Thursday of last week. I think Blogger was having a pre-Friday the 13th glitch, and so my post has vanished - poof! I don't remember all I wrote, but it had to do with the side effects of my first 15 radiation treatments that are now showing themselves in my body. Yes, I'm halfway through. Today was No. 15...15 to go. Wow.

In one of my first visits with Dr. Avizonis, she said it would take 2-3 weeks for the various side effects to start popping up. Since she's a pro at this radiation stuff, I shouldn't have been so surprised Thursday morning when I felt a few dozen strands of hair in my hands as I showered. The more I washed, the more hairs fell and gathered on top of the drain. Just a few days earlier, I had told Chelsea that I needed a plan for my hair - it was growing out of control and the back was totally un-shaped and ugly. I thought I needed a hair appointment to get it "thinned". A-HA! Nature gets the clue and does its own thinning! It's been five days now since last Thursday, and every morning's shower has given me a little clump of hair to scoop up from the drain and throw in the trash. I still can't tell if it's just a widespread "thinning' or if there is a specific spot that is slowly going bare, but so far it's not noticeable. And I've been promised I will NOT go bald, so that's a plus. It just makes my intense dislike of cleaning up hairs in the bathroom a double whammy...

Friday was a melt-down day/night. I tried to pay some bills, but the money ran out in a split second. I was stressed to try to work as many hours as I could (it was the last day of my pay period, so the rush was on to earn as much as possible for this little paycheck) and I was overwhelmed by all I needed to get done for my Scentsy open house on Saturday. Janessa had been doing little jobs for me all week - like putting labels on my books and sorting through my tester jars to weed out the discontinued scents - but there was still the basic cleaning house and setting up to do. I asked Dean to vacuum for me and that was a huge service. (He even did the bedroom where no one but me would see.) Later, we took Janessa to a party and decided to go to dinner. My taste buds have slowly died (another side effect), so eating has become a burden rather than a pleasure. We went to a buffet so I'd have a bunch of different choices of what I could taste and what I couldn't and just what would fill up my tummy. It was semi-disastrous. I was craving salad, but it tasted awful. I ate about five bites. I went back for fish and vegetables. The fish was blah. I tried a roll with butter and raspberry jam and could only eat two bites. I wasted so much food. Only the green peas and clam chowder were doable. It was terribly depressing.

So, that night, as I went through my bedtime routine of flossing, brushing, rinsing, massaging goop into my scar area, I lost it. I sat on the edge of my bed and had a 60-second pity party. Poor Dean. His wife is barely recognizable lately. The hair, the taste buds, the sore throat, the dry mouth, and the stress of life just overwhelmed me. I went to sleep with tears on my cheeks, but I woke up the next morning feeling better. Didn't I say once at the beginning of my treatments that Fridays would be hard after the daily barrage of radiation? I should amend my last post to say that SATURDAYS and SUNDAYS are now my favorite days of the week, as long as I can make it through Friday.

I'm thankful that these side effects are temporary...I will be able to taste again...I will have normal hair again...I will have full energy again...I will be able to take care of myself and my family and my home like before...and Fridays will be just another day in my life. Yes. Grateful for all of that and more, like life itself. That's a big one. And since all this fuss and "fun" gives me more time with my great family, it's all worth it. Every last strand of hair and punk taste bud...

Friday, May 13, 2011

Friday At Last

May 13, 2011: Friday has become one of my favorite days, especially after 9:00 AM. The weekend looms ahead, no matter how busy, with promises of not having to be on the radiation table for two whole glorious days. (I'm really not complaining about the treatments themselves, which are easy and quick - just the fact that they must be done at all.)

My weekday mornings are pretty much routine now. Drop Ness off at school (hopefully before 8:00, though some mornings are definitely better than others), drive a mere five more minutes to Aaron & Lindsey's house, help put little tiny girls in their car seats (Avery reminds me every morning that she knows how to climb up herself!), get into the passenger seat beside Linds (who is a terrific chauffeur and comfort to me) and take the freeway to 3900 South and 7th East in Salt Lake (about a 15 minute drive). Linds parks around the back of the building, where a convenient "back door" to the clinic is open. I walk in and sit in the treatment waiting room, usually with several other "lucky" people, where a camera in the corner alerts the technicians that I've arrived. I'm called back by one of the techs, who have me put my initials beside the date in my personal file and check to make sure that it's MY picture I see and MY neck x-rays on the monitor before going into the treatment room. They help me onto the table, give me the knotted dogbone to hang onto, put a strap around my feet, and get me pressed into my lovely mask. My eyes are closed, but I feel myself being raised and then moved forward into the radiation chamber. The techs talk to each other, calling out my personal coordinates back and forth, to which they always respond, "Perfect." Then, I hear them walk away and someone usually calls out, "Okay, we're ready to begin." I hear whirring and clicking of machinery, and then comes the first of the FIVE long beeps that signal the radiation "blasts". The first beep/blast is about 20 seconds long - I know, I've counted. It's definitely the longest, so I imagine it's the granddaddy of all, the first and biggest and most potent. That's just my guess, but I imagine the longer the blast, the bigger the gun. This first blast sounds like it's coming from the top of my head. The machine moves and clicks and then comes the second blast of about 12 seconds. Another adjustment brings the third blast of about 14 seconds. More moving and whirring and I hear the beep of the fourth blast, this time closer to my ear on the right side; it's about 12 seconds again. And finally, the fifth and last blast, which sounds like it's barely inches from my neck scar, comes for another 12 seconds. The End. Finis. "I'm all done, Mama!" The techs come back in the room and set me free from all the restraints, and I'm out of there with a smile and "see you tomorrow." Five minutes, maybe six, and then 15 more minutes driving back to my car at Lindsey's.

I used to count the number of blasts and the length of the blasts to feel that the end was in sight - or should I say, within hearing distance. I've noticed the past few days that my mind wanders now - I'm thinking of my day and what needs to be done, or my worries and how to solve them - or I'm simply listening to the "Enya" music that's usually playing in the room. Soothing. Comforting. I guess I don't need to count anymore. I know the end will come. Today and tomorrow and the next day - and then one day around June 6, it will truly be THE END.

Ah, the weekend. How nice it is to see you again...

Wednesday, May 11, 2011

Judge Not

May 11, 2011: For the past two mornings, there have been "new" people in the treatment waiting room (when you go at the same time every day, you learn to recognize what's new). They were there yesterday, but I only briefly observed them. Today, I openly acknowledged them - and there is one of my tender mercies for the day.

Yesterday, I sat in the nearest chair to the hallway, which meant that the "new" people were several chairs away from me. My first glance - only a split second observation - put adjectives in my mind: two people (one man, one woman), 80-ish year-old woman, 60-ish year-old man, rumpled clothes, man with long scraggly hair, woman with deeply-lined face and obvious lack of teeth, skin etched with rough living. Imagine two homeless people pushing shopping carts with their worldly goods inside - that's what I thought I saw. From the hallway, I heard a child's voice, calling, "Mama, I'm all done. All done, Mama," and into the waiting came a slight figure with very short gray hair and an adult woman's wrinkled face, clutching the dressing gown in her two little fists, smiling as she told the woman sitting there, "Mama, I'm done now."

Now, I'm staring. "Mama" gets up and tenderly puts her arms around "Betty", her daughter, who has just had radiation. The sweet nurse, Sandra, pats Betty's back and says, "You did well, Betty!. We'll see you tomorrow," and then Mama and Betty go into one of the dressing rooms and shut the door. Sandra turns to me and says, "We're ready for you, Lisa."

This morning, Mama and Betty's brother (he has to be) are sitting in their same chairs when I walk in. My heart is still full from yesterday. I smile at them and say, "good morning," and they both smile and say it back. Mama calls me "honey". "How are you today, honey?" We start to talk. Brother asks if I have breast cancer too. No, I say, and tell him snippets of my story. Both their faces are instantly concerned. He tells me that Betty has had a mastectomy and that "we almost lost her - she only had a week to live." Their love is heavy in the room. We talk about our treatments - Betty has to have 25, compared to my 30 - and then, she'll go on to chemo. My little brain wonders how they'll pay for all this, which is one of my biggest worries, but they only think about Betty. We laugh when we realize that we are both crossing days off our calendars, and Mama admits that it's the only way she can keep track. Then, we hear that little voice, saying, "Mama, I'm all done," and Mama says sweetly, "There's my girl," just like my mama would say, just like any mama would say, and in comes Betty, grinning from ear to ear, a handmade knitted cap on her head. The nurse motions to me that it's my turn, and as I pass Betty, I pat her on the back. Mama stands to take her into the dressing room and says to me, "Good luck, honey." "Thank you," I say. "Good luck to you, too."

I hear the Savior say, "Judge not." We are not our bodies. We are not our scraggly hair, our wrinkled faces, our rumpled clothes. We are not our missing breasts or our scarred necks or our bald heads. We are not the burns, the broken parts, the dirt, or the weight. We are what is inside, and no one can "see" that unless we reach out with our hearts. Thank you for teaching me that - again - today, Lord. See you tomorrow, Betty and Mama and Brother. We'll chat more then.

Tuesday, May 10, 2011

One-Third Down

May 10, 2011: Had a blessed Mother's Day weekend. Warmish weather. A great chili cook-off that scored me "Best Darn Chili" award (thanks to Chelsea's Chicken Chili Blanco recipe). Dinner with my Mister and my baby-cakes. Tears on Mother's Day, shared and alone. "I love you's" that mean the world, literally. Priceless children. Precious grandchildren. Beloved mamacita. Blessings by the truckload.

Yesterday marked my 10th radiation treatment. One-third of the way through this path of my little journey. Today, I walked into the treatment room to see Mark and Mary, two of my favorite techs. "Ah," I said, "you're waiting just for me!" "Yes," said Mark, "we've got your bed ready and your pillow fluffed." My bed - the narrow metal table with a fresh "placemat" for me to lay on. My pillow - the plastic mold that holds my neck in the right position. All the comforts of home. Yesterday, as Mark unclipped my mask from my head and face, I subconsciously rubbed the places where it smooshes me the most - my chin and lips (remember when it used to be my windpipe? This is such a relief, though it leaves "road rash", as Dr. A calls the indented pattern of little diamond shapes that linger on my skin for about a half hour after the treatment). Mark saw me trying to bring those spots back to life and said, "You know, we don't want you to get too used to this thing, right?" RIGHT! Only 19 more treatments to go!

Once a week, I get to visit with Dr. Avizonis for a few minutes, just to check on how I'm doing. She came in today and said she was glad I was still smiling at her. "We'll see how you feel in a couple of weeks!" she joked. I told her there were minimal side effects so far - more dry mouth (but not unbearable) and increased loss of my taste buds. Taste buds are interesting fellows, you know. I could taste that spicy salsa I made over the weekend (that burned my hands for about 24 hours!), but the ketchup on my turkey burger Sunday was as dull as dust. Blech! Linds thinks I need to try Indian food - see if some curry wakes up these guys inside my mouth. Other than that, I'm doing well.

I asked Dr. A to check my neck scar, simply because it has felt different the past few days. She looked at it, felt it, and said it looks like it's "reinventing itself". I wondered if it was being "cooked" from the inside - some of it seems so stiff and hard. She said the radiation is certainly making things inside "inflamed" and "swollen", but she is not a bit concerned with the scar area and everything looks perfectly normal. She suggested I try to massage it during the day with my Aquaphor to loosen it up and make it feel less stiff. I guess I'll add that to my nightly routine of taking out contacts, drinking a big glass of water, flossing, brushing with fluoride paste & rinsing with potent fluoride mouthwash. It feels like I spend more time in front of the bathroom mirror at 10:00 PM than I do the entire rest of the day. The last thing Dr. A said to me as I left the examining room was that I am "doing great." And I am.

Now, if it would just stop raining...

Thursday, May 5, 2011

The Stories behind the Scars

May 5, 2011: A week or so ago, my sweet niece, Britnee, sent me a quote that has haunted me ever since - and not in a bad way. It keeps me looking outward, instead of in, to see beyond my small, minimal scars at what others are having to deal with.

"We must see all scars as beauty, okay? This will be our little secret. Because take it from me, a scar does not form on the dying. A scar means, I survived." (from the book, "Little Bee")

I follow the blog of Stephanie Nielsen, a beautiful young woman who was severely burned in a near-fatal airplane crash a few years ago. She is scarred from head to toe and is unrecognizable from her former self. But, she has the most beautiful way of looking at life now and expressing gratitude for the small, simple things. I have a lot to learn from her. I sit in the waiting room for my radiation treatments, knowing that all the other people in the chairs around me are dealing with their own nightmares, their own suffering, their own Goliaths - and yet, they come in cheerfully, they sit and work on the never-quite-finished jigsaw puzzle, they do Sudoku while they drink the nasty contrast for their scans, and they chalk up another treatment like it's a day at the gym. I'm glad I don't know their stories. I'm afraid it would crush me. But I'm also glad I can sit beside them and soak up some of their positive-ness. Look at me, their scars say: I'm a survivor.

Today, my mouth is too dry to eat crackers. Food sticks to my teeth without that little thing we take for granted, called saliva. I've mixed a concoction of salt & baking soda water to rinse out my mouth, per Dr. A's advice yesterday. It doesn't taste too good, but it works! I guess when my taste buds go in a few days, I won't care anyway.

Time for an enchilada to celebrate Cinco de Mayo. I'll also eat some red grapes, as I read yesterday that they are a good cancer-fighting food. Gotta boost up those killer cells as much as possible. Go, Team, Go!

Wednesday, May 4, 2011

Wonderful Wednesday

May 4, 2011: Happy Birthday to my wonderful daughter-in-law, Lindsey. I am so grateful for her in my life right now. She has been by my side from the first days of this journey, and continues to be my taxi driver, my friend, and my advisor. I love her dearly. She is one of my best blessings.

Today is a beautiful day. I can't help but smile and feel joy. The sun is out, the grass is green, the sky is a radiant blue, and "all is right with my soul." I had my 7th radiation treatment this morning. My mask didn't hurt, my breathing was calm, the room was a little warmer, and there was the smell of fresh-baked glazed donuts in the air (Linds sent me in to treatment with two dozen donuts for the staff to celebrate HER birthday - very sweet). I had a short visit with Dr. Avizonis, who made me laugh. She told me to "enjoy the honeymoon" for as long as I can before the side effects of treatment start popping up. She gave me an easy, home remedy for dry mouth (from the loss of my salivary glands) and reassured me that the metal taste I'm experiencing now will probably end by next week - when I lose my taste buds! She also told me that when I do lose my taste, I shouldn't worry about "balance" in my meals - "Go ahead and eat whatever feels good in your mouth and sounds good to your ears, even though your tongue won't care a bit." I like that! I hope something chocolate wins that test...or maybe ice cream...

"Smile. Let everyone know that today you're a lot stronger than you were yesterday." Great quote. And if you're wondering, I'm smiling right now.

Monday, May 2, 2011

New Month, New Week

May 2, 2011: Went south over the weekend and enjoyed a wonderful "blessing day" for our sweet Knox Aaron. It was a beautiful spring day, all six of my grands were within hugging distance, and I felt so grateful. Rob gave his precious son a sweet blessing and the Spirit was strong. In the circle were both "papas" and two wonderful uncles. We are so blessed.

After the blessing, a member of the congregation got up to speak and said, "Knox Stephenson. I want all of you to remember that name. Did you see the size of the men in that circle? Knox is destined to be a tall, superstar basketball player someday. Remember that name!" I loved that.

Last Friday, I had a mammogram. It was a piece of cake. Even the cute technician remarked that I was "very relaxed." And why not? I've lost all my inhibitions about my fat rolls and lily-white skin, and one more test in the grand scheme of things is just one more hour in my life. The best part was the chance to meet "Martsie", who was truly an angel in disguise. She was deeply concerned after hearing my story and shared that she has a friend battling melanoma who has created a sort of forum for us "soldiers" to lift and help each other. When she gave me a hug as I left the office, I thought in what other circumstance would that ever happen, unless we've been touched emotionally by each other? It only confirmed to me that, though this is a battle, there are countless "first aid stations" along the way with just the right love and compassion and gentle inner healing to keep me going day to day.

This morning started a new week of radiation treatments. I woke up with a runny nose (hopefully from allergies) and all I could think of was, "please don't sneeze under the mask!" My nose is squished anyway - it always takes a minute to calm my breathing and not panic that I'm not getting enough air. But once again, the everlasting kindness of the Lord took over. I was fine under the mask, I was able to breath, I didn't need to swallow, and my runny nose has disappeared.

It's also a new month. Before I erased April from the dry erase calendar on my fridge, I wrote down all the doctor's appointments and tests I've had during the month. FOURTEEN! 14 visits, a couple of vein pokes, teeth and eyes checked out, meeting new doctors, revisiting old ones, seeing my life mapped out in a daily parade of treatments. Who would have guessed? So grateful that I don't know - exactly - what my future holds. I might run screaming from the room. And then again, I might be totally overwhelmed at the bountiful blessings pouring down from heaven. I have no doubt in that future - it has already happened and continues to happen each and every day.