Thursday, April 28, 2011
Day #3 of treatment. Yesterday and today only lasted five minutes each. I asked if they were just "breaking me in slowly." They said some treatments may be a bit longer, but never more than 15 minutes. Slow and sure is okay. I'm not all that anxious to feel the side effects anyway.
Today I made two (more) doctor appointments, one for a colonoscopy consult and one for a mammogram. The C-consult is scheduled for May 18. The mammogram is TOMORROW at 12:00 noon. Lovely. Doesn't give me time to think about it, which is good. But can I just vent a bit and say that I am so tired of being a patient? My little insurance card is getting worn around the edges...and so am I. Besides the daily thing at the Utah Cancer Center, I've been to the Bountiful Clinic twice this week - once to see Dr. Beckstead and once (yesterday) to get lab work done. I never really wanted my insurance site to be on my "favorites" list, but there it is. After I set the mammogram appointment, I imagined the poor representatives at Regence who punch my name into the computer and get 20 pages of procedures and claims from the last month and a half - and virtually NOTHING before then! Okay, I'm done venting...
I really shouldn't complain about anything, especially after I "overheard" a man and his wife filling out what I'm sure was his umpteenth form at the Cancer Center this morning. I guess the questionnaire wanted his "recent medical history", to which he dictated to his wife, "Renal cancer, one kidney removed. Renal cancer of the brain, radiation treatments. Last Thursday, CT scan showed possible pancreatic cancer." He was drinking contrast for yet another scan, I'm sure. As they both bent over the form, I sneaked a peek at their faces. Calm on the outside. Screaming on the inside. Not too old, about my age. His matter-of-fact pronouncement of these deadly diagnoses was familiar to me, but I still wanted to throw my arms around him and tell him how sorry I was. No. He would not want that, any more than I would. He was there, sitting in one more doctor's office, drinking that horrid contrast for one more scan to see if there was one more thing they could do to save his life. I left the room completely sobered.
When I finished my quickie treatment and went back out to the car where Lindsey and Avery and Jane were waiting so patiently for me in the parking lot, I told Linds about this man. I put my head back on the seat and said, "Oh, it could be so much worse!" That's when Linds said, "So, that's our positive thing for the day."
Yes. One positive thing a day, at least. It could be so much worse, but it's not. I have FIVE MINUTE treatments where others may have to be strapped into their uncomfortable masks for many, many more minutes, and they do it. Let me be more grateful. Let me continue to be hopeful. Let me continue to be positive. Don't let me complain (too loudly). It will all be okay. It will all work out for the best.
Tuesday, April 26, 2011
I listen to the buzzing and beeping of the radiation machine. Strange that the noise is a signal of the action - I know I'm being radiated when that beeping sound goes off. There is no pain, no feeling at all, only sound. The machine rotates from one side to the other (and for a moment, I worry that I am being radiated from the left side - a question I must ask Dr. Avizonis). All in all, I hear about five or six beeps. I sing "I am a child of God" and "Teach me to walk in the light" all the way through every verse in my head, and then I hear Mary coming back to stand beside the table. "Okay," she says, cheerily, "you're all done."
Seven minutes. Not bad at all, especially since I was expecting twice that long, at least 15 minutes, of radiation. Seven minutes. Doesn't seem like much, unless you're counting beeps and singing, "Lead me, guide me, walk beside me..." so your mind is occupied with something positive instead of imagining killer beams in your neck. I am relieved to have this first step accomplished. Relieved that number one is done - 29 treatments to go.
Later in the day, I have an appointment with my new family doctor, Dr. Beckstead. I like him immediately. He is soft-spoken and polite, yet I sense a funny side lurking behind his impeccable bedside manner. He does the hard tests first, which helps me relax while we talk health - give him 10 points. He shows me his cool "toy", a voice-activated transcribing machine that types what he says right into the Notes box on his computer - give him 20 points for impressing the transcriptionist. When he finds out that one of my doctors is Dr. Bradley, he says, "Oh, yes, Josh!" Give him a whopping 50 points for knowing my Dr. B. And before he walks out of the examining room, he sincerely tells me that he is here for me, no matter what, no matter when, and that it won't hurt his feelings at all if he doesn't HAVE to see me again for another year. Give that man a gold medal. I'm sold.
It's another great blessing of this journey that my doctors and nurses have all been angels on earth, and here I've added two more today. It certainly makes my daily exchange with the medical field more delightful, more interesting, more positive, and more hopeful. I may be on a roller-coaster, but it's a five star ride!
Monday, April 25, 2011
Mark leads me back to the treatment room. Yes, there is the stark, narrow table with the little neck rest, and there's where they'll put a Velcro strap across my feet to keep them still. There's the table against the wall where I can set my purse, which looks totally out of place in this treatment-defined room. It's cold in the room, like someone has left the air-conditioning on accidentally overnight. But, it's not accidental. It's on purpose. I still get to have a "dogbone" (knotted handkerchief) to wrap my hands around, but I don't get a warm blanket this time.
Mark and a nurse bring over my "mask" and begin to place it over my head and shoulders. I close my eyes, and wonder again why I bothered to put on makeup or do my hair today. I wonder if there will come a point when I'll just come, unshowered, undone, and not care. My mask is tight across my nose and lips, and I wiggle just a bit to find a hole in the "net" where my nostrils aren't as constricted. I'm told to lift my chin, just like before, and when I do, I feel the contours of the mask fit more perfectly to my head and neck. Then, as before, I'm being screwed into the table, the click of the plastic clips loud in my ears. I feel the net close against my esophagus. It's uncomfortable and a little scary. I'm worried again about choking - or needing to cough - or not being able to swallow. I try it, regardless of the warnings to keep absolutely still. Okay. I can swallow without too much effort. But, there's a pressure on my throat, like someone has his hands on me. I've watched too many episodes of CSI and NCIS.
With my eyes closed, my other senses go into overdrive. I'm sensitive to the beeping and buzzing of the machines. I can hear my heartbeat in my ears. When the machine switches positions, I can feel the air moving across my skin. I can smell the clean, soap scent of the nurse as she comes back into the room to check the "pinpoints of light" against my mask. Through my eyelids, I can see flashes of light of the X-rays and I can hear the click as the image is taken. If I wasn't so tense about my throat, this could actually be somewhat soothing.
I'm prepared to be here for an hour. Didn't someone somewhere say that's what I should expect from today's visit? But, just as an answer to prayer comes to calm and assure me that I will not choke and I'll be fine, the nurse returns and begins to loosen the "bolts" of my mask from the table. The relief is instantaneous. My throat is free. As she lifts my mask completely away and helps me to sit up, I ask, "Is that all for today?" Yes, she says. That's it. You're done. Twenty minutes, tops. I can handle that. I DID handle it.
Tomorrow, I will talk to Dr. Avizonis. I will tell her that I'm concerned about my throat. I'm sure there's nothing she can do at this point, but maybe she'll have a tip or two about how to manage that initial discomfort and fear of choking. I'll also ask if we can move my treatment times to something more reasonable for two moms who need to get their kids to school and who would choose not to be in the middle of morning rush hour. We'll work it out.
And, so it begins. 30 treatments at 15 minutes a day, five days a week. I'm actually relieved to be at this point. The sooner we begin, the sooner we end. I should get a big, black Sharpie and make huge Xs on the calendar at my desk as each day passes. Maybe that will make me feel better to see that criss-cross of progress march across the page. I know it will be progress. I know it will be successful. Those Xs will be the "stones" I throw at that mean ol' Goliath, each one hitting their target and bringing the Big C down, never to rise up again. God will be beside me, loading my slingshot, helping me take aim, whispering in my ear to never give up. And I won't...not ever.
Saturday, April 23, 2011
- "I know that my Redeemer lives..." - Through the blessings and miracles of the past few weeks, I have NO DOUBT that He lives. He has answered prayers. He has put His arms unfailing around me in my darkest hours. I have felt Him near. He lives.
- "What comfort this sweet sentence gives!..." - Oh, yes! Comfort. Peace. Even in the face of uncertainty and despair, the fact that He lives and loves me is a balm as warm as any ray of sunlight.
- "He lives, he lives who once was dead..." - As surely as the sun comes up in the morning, I know Jesus Christ conquered the tomb and rose from the dead in glory as a resurrected being. He lives, and I will kneel at His feet someday.
- "He lives, my everliving Head..." - As one of His disciples, I look to Him as an example of how to live a God-filled life. I try to follow His teachings. And when I fail, as I do almost every day, I know He has made it possible for me to repent and be forgiven. He is the King of Kings, Lord of Lords.
- "He lives to bless me with His love..." - I know I've been blessed immensely in my life, through good and bad days. I also know that this lifetime is a test to see how we will conduct ourselves. The Lord is my protector, my guide, my solace, my hope, and my friend. No one else will ever love me like He does.
- "He lives to plead for me above..." - I have a favorite quote hanging on my wall that says, "The Savior must grow weary of the foolish way I live. I want to give him just one day when there's nothing to forgive." In all my mistakes, in all my sins of omission and commission, in all the foolish regrets of my life, I know the Savior stands before my Heavenly Father and asks that I be forgiven and accepted. He is the Mediator, the one who will judge me by the good I've tried to do and the person I've tried to be. How grateful I am!
- "He lives, my hungry soul to feed..." - There is a yearning inside me to be closer to my Lord and Savior. In the weeks following my surgery, I wasn't able to take the Sacrament. I felt a hunger, a deep need to renew the covenants I made at baptism and in the Holy Temple. He feeds my soul. His Spirit fills me like nothing else can.
- "He lives to bless in time of need." - Sometimes late at night, when I can't sleep and the demons are chattering in my head, telling me I am doomed and have no chance at a normal life, I squeeze my eyes shut and say a prayer...and the calm comes like a warm, snuggly quilt. Other times, when I'm worried about this or that, whatever the need is at the moment, I hear the Savior's voice in my ears, telling me that it will all be okay. It may not be easy, it may not be joyful, but it will be okay. It really will. He knows, and I believe Him with all my heart.
I'm thankful for what I've learned thus far. I know my life lessons have not stopped - and I honestly wouldn't want them to. I know there are dark days, hard hours, and miserable minutes ahead. But, just when I think I'm about to crumble, the Spirit reminds me that I have an Elder Brother who suffered in the Garden of Gethsemane for me, so that He would always know how to succor me - RUN to my aid - whenever I called out for Him. And that's when my feeble brain starts to whisper, "Miracles and hope...please, oh Lord."
Happy Easter. May His Holy Spirit be a light in your life, too.
Friday, April 22, 2011
April 22, 2011: In the midst of all the NOT FUN things I get to do lately on an (almost) daily basis, I also get to do some VERY FUN things - like singing with my favorite groupies, the Utah Symphony Chorus. Sometimes, I have to pinch myself and wonder how I ever got so lucky to be able to sing with the incomparable Utah Symphony Orchestra - a world class organization - and stand in front of such great conductors as Keith Lockhart, Thierry Fischer, Andrew Litton, and our chorus director, Susanne Sheston. It is a blessing and a guilty pleasure to spend two hours a week in rehearsal during the year with my 150 co-choristers; and then, during concert week, to meet nightly at the beautiful Abravanel Hall in SLC and sit on stage with our orchestra and conductor and soloists as we iron out the rough spots for the performances and participate in extraordinary classical musical feasts.
This season, we started preparing four months ago for our performance of "A Child of Our Time", written by Michael Tippetts. He's a contemporary composer, which usually means the tune may be a little wonky in rhythm and melody- which to my very symmetrical and Mozart-like brain means it's not at all harmonious. I like my music to mesh - to lead from one beautifully-placed note to the next. Mr. Tippetts likes it to clang and clash and cause one to wince a bit. During those first few weeks of rehearsal, as we waded through notes that went up the scale when they should have gone down and rhythm patterns that had the men singing one way and the women another, I hated the piece. Well, that's harsh. Let's say I was totally unenthusiastic about it. It was like fingernails on a chalkboard.
But as I've had to miss rehearsals and been required to work on my own, which involves listening to MP3 files online of Dr. Sheston playing my Alto part prominently on the piano while the other parts are playing softly in the background, the piece has become more comfortable. Not like an old pair of slippers, but like something that has been through the wash and come out of little softer. Certain parts will never be something I'll sing in the shower, but some parts are downright haunting and beautiful. Yes, I've come to respect - and even admire - Mr. Tippetts.
The rule in our Symphony Chorus is that we commit to attending every rehearsal during concert week, usually Tuesday through Thursday, with performances on Friday and Saturday nights - or we bow out of the performance. It's a given, no argument. Of course, there are always extenuating circumstances, but permission is rarely asked for, even in those times, and rarely given; the reason being that every night, notes on delivery - speed, phrasing, pronunciation, dynamics, etc. - are passed from the conductor to Dr. Sheston to us, the choristers. You miss a night and you might be the one shouting out that last note when the conductor decided at the last minute that it should be whispered, sotto voce. Not a good thing. So, when I found out that we would be rehearsing an extra night - adding Monday night to the mix - I didn't think I would have the energy to do it. Already, the Tuesday rehearsals at the Production Studios was taxing; I got very droopy by 9:00 and could hardly talk, let alone sing. I'll admit I was not as well prepared for this concert as I've been in the past, missing those weeks with the group while I was healing from surgery, but I still had put in a bunch of time and wanted to perform. I knew Dr. Sheston - I do call her Susanne, even at rehearsals - was aware of my situation and had even asked about me while I was gone. So, I gathered up my courage, hitched up my bootstraps, and said a prayer that the best decision would be made - and asked Susanne if she would agree to let me do a modified rehearsal schedule: Tuesday and Thursday at Abravanel, copying down all the notes passed along from either her or my buddies in the Alto section, and practicing more on my own. I was prepared to be denied; in the past, she's been known to deny performing to people who have a child getting married on one of the rehearsal nights or a death in the family. Yep, I was ready to grab my comp ticket and sit in the audience and just listen. To my amazement, she agreed to my schedule and even wished me the best along my journey. Before Tuesday night's rehearsal, as we were making our way to the stage, she came up beside me and asked me how I was doing. I was touched at her concern and very, very grateful for this opportunity.
So, here I go. In less than three hours, I'll be standing on stage, waiting for the first bars of this difficult, challenging, but haunting and hopeful piece of classical music. The soloists are first rate and add depth and soul to their parts. As I listened to the Contralto's first solo, I was touched by the words, and realized that they hold much more meaning to me now than they ever would have done before:
"Man has measured the heavens with a telescope, driven the Gods from their thrones. But the soul, watching the chaotic mirror, knows that the Gods return. Truly, the living God consumes within, and turns the flesh to cancer!"
Later, the chorus sings, "I would know my shadow and my light; so shall I at last be whole. Then courage, brother, dare the grave passage. Here is no final grieving, but an abiding hope. The moving waters renew the earth. It is spring."
In between, we sing "spirituals": "Steal away to Jesus, I ain't got long to stay here," and "Nobody knows the trouble I see, Lord," and "Go down, Moses," and "Deep river, my home is over Jordan...I wanna cross over into campground, Lord." I hope it will be as mesmerizing to the audience as it's been to all of us.
Wish me luck, but don't tell me to "break a leg". Too many broken things are trying to heal as it is. I'll be a-singing and a-swaying and a-smiling under those hot, bright lights. It's just where I wanted to be before my life turned upside down. It's another miracle.
Thursday, April 21, 2011
April 21, 2011: Yesterday was eye exam day. It shouldn't be deemed a "day", but it sure felt like it lasted that long. I forget that you have part of the exam, then comes the pupil dilation, then you wait for the full effect, and then comes the rest of the exam - the "looking inside". I was tired. I wanted it to be quick and easy. It wasn't. My eyes have changed (they always do from year to year), and I get discouraged thinking how NOT WELL I really see. Part of it is aging...nothing I can do about that. Part of it is wearing my last pair of contacts well beyond their expiration date. Must do better about that this year. Lakik came up, but even the doctor said, "Let's get you through radiation first." Good man.
For the second time in two days, someone has mentioned a book, called "The pH Miracle". I'm going to look into it. I'm already reading, "Anti-Cancer", and am very moved by it, even though I'm only on Chapter 3 (still). I realize that we have all heard or seen amazing antidotes to this awful disease and we all want to be able to take a pill, eat a vegetable, walk for 30 minutes a day, and be cured. I am willing to try (just about) anything, so I don't mind hearing the stories and reading the books. It's just that when the first line or paragraph says something like, "This is what Mr. Magoo (any name will do) ate/drank/meditated upon/coated themselves with/injected to cure their cancer...", it takes me a minute to realize I'm now in that group. And then, it's hard to read on. I'm toddling baby steps, seeing with new eyes (literally, now that I have a new pair of contacts on my eyeballs).
Check off the eye exam. I'm good for another year. (And I will be here for that exam!!) I'm halfway done with the appointments Dr. Grossmann and Dr. Avizonis wanted me to do for the clean sweep. Next week should prove very interesting - and not too fun. Lucky me. And yet, LUCKY ME that it's a mere 6 1/2 weeks since my diagnosis and I'm this far on my journey. Lucky, blessed me. The Lord is working overtime, and I love Him for it.
Tuesday, April 19, 2011
April 19, 2011: I feel like I'm on a carousel of doctors and I'm being spit out into their offices as I whirl at break-neck speed. The latest on the checklist was a trip to the dentist yesterday morning. Now, I will confess that dentists are not on my Top Ten list. I had a terrible experience in my 30s (long, long ago in another dimension) with a botched root canal and then a repair root canal that almost sent me to the loony bin. Since then, it's been hit-and-miss with my check-ups and follow-ups. When Dr. Avizonis suggested, rather emphatically, that I see a dentist before my radiation treatments begin and get myself a strong fluoride armor, it was with some trepidation. And yet, one thing I've learned in the past few weeks is that when we don't voluntarily keep up our physical maintenance, we may be forced to do it, one way or another. I know I need to go to the dentist regularly, just like I know I need to drink lots of water and eat healthy foods and exercise. It's a matter of laziness and the thinking that "oh, I'll do it next month - maybe after the holidays - maybe after my birthday - maybe when I have more money..." Ha. Never thought I'd be saying, "I'll do it after I am diagnosed with cancer."
Pouring rain. Me in shoes with no socks, so my feet are frozen. Dr. Baird's office is very nice, with elegant furniture and decor. I've already told my story to Beth, the office manager/receptionist over the phone. She expresses her sympathy as I check in. I'm shaky, filling out (another) health history. I should carry a pair of "readers" in my purse - some of the type is hard to read. I hear the whirr of drills and smell the distinct odor of dentist. My prayer this morning was that there will be no huge needs that must be addressed. My financial woes weigh me down.
I have an X-ray first thing. It's ironic that I must wear the heavy vest to guard against radiation. The little assistant, Aubrey, is trying not to cough and I wonder if she's sick. I wait for just a few minutes in the chair, listening to Becky, the hygienist, finish up with the guy next to me. She asks him questions, and I can hear his muffled "mm, hmm" as he tries to answer with her hands in his mouth. Why do they do that? Finally, I hear him laugh. He's done. He's out of here. No wonder he's smiling now.
Becky comes into my little cubicle. She's cute and very nice. I ask if I can tell her my story. She says, "of course, tell me everything." I feel fragile, vulnerable, and start to tear up. I'm getting better at not bringing my emotions into every conversation, but I sit here like a little child, uncomfortable and shaky. She listens intently and I am sorry to shock her so suddenly. It's not every day a complete stranger tells you they have cancer and their life has become something unreal. But, sometimes I just have to play the melanoma card - I tell her that if I've got big problems inside my mouth, they may have to wait until another day, when I don't have radiation treatments breathing down my neck (literally). She understands. I begin to relax.
I've suspected my gums are receding. Isn't that pretty much the norm for a 50-year old? I also suspect that the infamous root canal tooth needs renewed attention, again. But, I like my teeth and I'm a conscientious brusher. Flossing is another matter - that comes and goes. I think of the money my sweet mom and dad spent on braces for me as a teen - money that was hard to come by, money that wasn't available for my siblings - and I feel a debt of gratitude that includes taking care of my smile. So, when Becky tells me that I have no cavities (after not seeing a dentist in at least five years), I'm grateful for that twice-daily "habit" I have. BUT, my teeth are like concrete blocks of plaque and my gums are definitely showing infection. She understands the "need for speed" and proceeds to grind/chip/sand/power-wash the gook & gunk from my poor little teeth. As she's working, she's telling me about the $15 Super Heavy Duty fluoride toothpaste and the prescription mouthwash she wants me to use every day before and during my treatments. Despite the cost, I like that approach. The better the shield on my teeth, the better the outcome, I'm sure. She also tells me that the radiation will probably stain my teeth (I don't remember Dr. A saying that!), so they'll be sure to do a whitening procedure when it's all over. When she's blasted every inch of my mouth, she puts five $40 (each) antibiotic "charges" in the infected pockets of my gums and pronounces me ready for the fluoride "varnishing" they now do instead of the gooey trays. Dr. Baird comes in for about five seconds, looks at all my teeth, advises that I get overlays (at a future date) for two of my metal fillings (I only have four fillings total in my mouth) that are "leaking" (horrors!) and that at some point, I should have my root canal tooth removed and get an implant. He is worried that if I were to be radiated on that side, it would be impossible to ever remove that dead tooth, as direct radiation "kills the blood vessels in the jaw that would hold onto an implant, so if the tooth is pulled, you would have an open wound for the rest of your life" - I shouldn't put quotation marks around this because it's probably not exactly what he said, but this is the quote that sticks out in my unknowing brain today. Now, I'm worried, too, even though the root canal tooth is on my left side. As soon as I get home, I put in a call to Dr. A and leave that message with Val, her assistant.
When I finally leave the dental office, I'm loaded down with samples and full packs of toothpaste, dry mouth remedies, and the mouthwash that will "make all your food taste yucky, so don't use it before you eat." It's still raining, and I'm $100 lighter in the wallet (and that's just the down payment). I've been "under the drill" for an hour and a half, but I'm cleaned and polished and armed for the fight. I should feel grateful - and I do, very much - but I'm also drained. No hopping over to the store like I had planned - nope, I'm headed straight home to the comfort of my own four walls.
Last night, Becky calls my home to see how I'm doing. "You were great today," she says. There is one reason I'll be going back to have her work on my teeth. Today, I get the news from Dr. A that I will not be radiated (interesting term - it sounds warm and wonderful, but oh, how wrong) on the left side, so there is no need to worry about the root canal tooth living (even though it's deader than a doornail) permanently in my mouth. Other news of the day, I have an eye exam scheduled for tomorrow morning at 10 AM, having used the cancer/radiation trump card again for a quick appointment. The appointment with my new Primary Care doctor was made yesterday for next Tuesday - let's hear it for more tests and probing and pricking. A N D, my mommy left this morning to go back south. I already miss her...a lot. Bring it on. I'm a tough cookie, a warrior, a girl on a mission. Just let me grab my water bottle and take a quick nap first...
Friday, April 15, 2011
April 15, 2011: This morning, I'm back at the Utah Cancer Specialist Center with Mom at my side. Walking in the front doors is not quite as hard today. I'm getting used to these places where suffering people look pretty much like you and me - oh wait, I am one of those people now. And yet, I'm also getting used to seeing people who are still smiling, still making jokes, still being polite to perfect strangers, still getting up every morning and fighting their way through another battlefield.
I follow a woman to the check-in desk. She's very thin, like a walking stick. No one is behind the desk to greet us, so we automatically turn to each other. I smile and say something like, "Well, we're here on time - where are they?" She smiles, too, and struggles a bit to speak. I notice that her mouth is crooked. But more than that, I notice her neck scar, mainly because it is terrible and so much worse than mine. Where mine is mostly hidden by my growing hair, hers hangs down her neck to her collarbone, loose and misshapen, red and wrinkled. I want to whisper, "I'm so sorry," and then I realize that she is looking at my neck. She has noticed my scar. Maybe we are thinking the same things, she and I. We are bound together in this chaos. I'll never complain about my scar again.
Mom and I go through the office doors to another waiting room. There is a little portable boom box on an end table, spouting static and popular music. I'd rather turn it off than wade through the crackle to find the tune. A tech named Jenny comes to get me and off I go, leaving Mom to make her way to the outside waiting room to maybe find a Coke machine and a soft chair.
Jenny introduces me to a second tech who sits in front of a computer outside the CT scan room. She tells me that this is not the room where I'll be getting treatments, but the narrow silver table is much the same. "We are going to do your mapping today," she says, and I nod like I know what she's saying and what's going to happen. I did know all of this a few days ago after my talk with Dr. Avizonis, but today, I'm wiped clean, waiting to be filled again. She shows me someone's finished "map" that's sitting on a shelf - a plastic-netted half-bust with a head and neck and shoulders that someone (maybe Jenny) has drawn red and black marks on. It's weird, surreal. People have really done this before today? Someone other than me?
I lay on the silver table. I get my neck positioned on a little cradle. The other tech (can't remember her name) hands me a white cloth that's been folded and tied with two big knots about a foot apart. "This is for you to hold onto," she says, "so your hands will have something to do." I'm grateful. I cling to those knots with all my strength. Dr. Avizonis comes in, breezy and cheerful. She thinks I should take off my blouse, just so I don't "go home dripping wet." The techs help me take it off. I've undressed in front of so many people, it barely matters anymore - almost. Dr. A tells me about her conversation with Dr. Grossmann yesterday, that both of us agreed this was the next step in my treatment. She proclaims the "luck" of getting me in for my mapping today, since she isn't normally at the UCS Center on Friday. I know it isn't luck - it was meant to be. I love the way she talks to me, like I'm one of her sisters. She puts one hand on my back and the other on my arm and gently caresses me. It calms me and makes me feel special. I wonder if she realizes how much that means to someone who is scared and uncertain about the next five minutes, the next hour, the next six months... I'm so grateful for her.
The doctor gives me another smile and quietly leaves so the technicians can get back to work. I stare at the white ceiling tiles while they mix up the concoction they'll be putting on my face. I've been warned that it will feel very warm, but it won't burn me - "just be prepared for a bit of a shock when we put it on your face." As Dr. A told me on Tuesday, it's like a liquid "blob" at first, but when it cools and dries, it hardens into a mold. Finally, the techs are coming toward me. "Ready?" one says. Sure, whatever. And then, it's on my face.
It is the strangest thing. Yes, it's very warm, like a hot washcloth. I hurry and close my eyes and breathe through my nose. Dr. A told me to just pretend I'm at a spa having a facial. I'm pretending with all my might. Then, standing on each side of me, the techs start pulling at it, stretching it over my face, smoothing it over my cheeks and forehead and down my neck and across my shoulders. There are holes in it, diamond-shaped like a waffle cone, and I can feel them pressing into my skin. The techs are tugging, pulling at it, and I feel it across my chest and over my shoulders. When they have it stretched all the way, I hear clicks and snaps as they fasten it right to the table - and there I am, pinned like a giant moth to black velvet.
The next step is the cooling process. I think I hear one of the techs talk about the "freezer", so maybe they have taken some kind of cloth from there to smooth over my face and neck and shoulders. It feels good as it cools, but I can also tell it's hardening. I realize that I have to swallow, even though I'm not supposed to move. It's strange - the "net" is pressing against my esophagus. I hope I don't start choking. I swallow once, then twice, and it's okay, but I can already feel the saliva forming again above my tongue. This is harder than I thought.
When I've been tethered to the table, one of the techs asks if I'm all right. I obviously can't open my mouth or nod my head, so I mumble, "uh-huh", in my throat. I sound different from way down there. They are now "marking" the plastic shell. I can feel them at my left ear, my chin, my forehead, both my eyes. The right side, I don't feel so much since it's still kind of numb from my surgery. Jenny must be the junior tech - the other girl comes around the table to check her work and says it looks great. "We shouldn't have to make any marks on your skin," she says. Oh, darn, I thought a tattoo might be a great conversation piece. She tells me that they're going to step outside the room while I go into the scanning chamber. I think it's probably a good thing that my eyes aren't open. I'm not sure how long I'm in there, but I begin to feel like I'm on a conveyor belt that's being operated by a four year-old - all the way in, all the way out (I can tell because it gets lighter and darker), in an inch at a time, stop and go, out an inch at a time - and then the loud whirring of the machine as it takes its images. I have to swallow a few more times. I'm afraid my chin isn't up enough, which means the radiation might shoot too close to my eyes. My mind is full of chatter - and then I start my mantra of "miracles and hope". It helps.
Finally, finally, I can feel the table sliding back out. There is light on my eyelids. The techs open the door and come back on both sides of me. I hear them un-snap and un-click and then the tightness against my skin is relieved. Off comes the mask and I can open my eyes. I can open my mouth and swallow without pressure. They set the mask on the floor (after all that, it should be placed in a vault where no one can ruin it!) and help me to sit up. I'm wobbly. Jenny takes the knotted cloth and I can see it's been wrung to death. They leave the room so I can put my blouse back on and I put my feet on the floor to steady myself. I can see myself in the glass of a cabinet - my hair is standing on end on my forehead and it feels damp in the back. I'm wondering why I even bothered to wash it and make it presentable, or why I wore makeup today. I'm sure I look a fright with a nice honeycomb pattern all over my face and neck and chest. Oooh, boy, let's go out dancing.
I get an appointment card that says I need to come back the day after Easter for a "dry run" of my treatment. I'm still too numb to think to ask if that means I actually get a treatment that day, but I doubt it. Jenny says that they'll check everything out to make sure it's going to work perfectly before they start my regular routine. This is too real, this is really happening, I am really going to have radiation treatments - wow.
My cute mommy is in the main waiting area. There is a school of massage therapists giving free 15-minute massages to anyone who would like one this morning, and there is Mumsy, getting her arms and hands kneaded by a blond masseuse. I lean over her and say, "Are we having fun yet?" and I know she is surprised to see me already, even though I feel like I've been in the scanning chamber for hours. I have to get a drink of water and sit. I keep thinking, "That was the weirdest thing ever. Who knew there were people out there doing this kind of thing?" I liked it better when I was naive to all of this.
Get mapping done - check. Get dentist appointment so my teeth don't all fall out during treatments - check. Do all the other umpteen things I've been told I have to do in the next five minutes - no check. But, hey, there's only so much one little overweight grammy with bad hair can take in one day - and that was it. How do people who don't start their day with prayer and a few chapters of scripture feasting make it? I could never do it. I don't ever want to try.
Thursday, April 14, 2011
April 14, 2011: Dark and early this morning, Mom and I head out for the Huntsman Cancer Institute for my appointment with Dr. Ken Grossmann. Sweet Lindsey beats us there by about five minutes. It is snowing, blowing, spitting hail. My stomach is churning. I so long to be comforted by today's doctor visit.
Valet parking is a blessing in a place that seems to be constantly under construction. Not having "Travis" (who worked so patiently with me over the phone when I was setting up this appointment) escort me through the maze and long halls to Clinic C on the 2nd floor, as promised, makes me nervous. Having the nurses and receptionists rush through my check-in to try to keep to schedule gives me stress. The lab draws three vials of blood. I am weighed (which comes out in kilograms to make me feel better, I think) and taken to a room - me and my wonderful "L" team of Lois and Linds.
Nurse Carolyn goes through my story, which she reviews with me for accuracy. I'm amazed at her efficiency. I undress for another head to toe exam and am appalled at my hairy "winter" legs - wish I had taken a minute last night to shave. Too late now - they're on display for all to see. We talk about prior moles I may have had, and I think to mention one I had removed about 25 years ago, which is the first time I think I've talked about it to anyone outside of my family. Why remember it now? I guess to reaffirm that it has no effect on what is happening to me now.
Finally, Dr. Grossmann comes in with another nurse, Karen, who will "take notes" for us so that all we have to do is listen. He is not at all what I expected - he wears a sports jacket and has a funny little bow-tie. He is young and has warm, brown eyes behind his stylish glasses. He, too, goes through my story, and now he knows me, quite intensely.
He then begins to tell me about the available options for treatment. He starts to talk about interferon, which immediately makes my skin prickle. Early on (the very day I was diagnosed), Dr. Bradley and Dr. Robison both expressed their dislike of the side effects of the drug, and later my friend, Judy Terry, told me about her experiences with interferon. I want to stop up my ears, but Dr. Grossmann gives facts, statistics, results of case studies, and tons of information that quite literally send me reeling. The bottom line is this:
*Interferon is administered in high, heavy doses for one month, which brings flu-like side effects: vomiting, fever, chills, fatigue, headache, etc. "Now, we can get you through this," he says. "We can do one month." BUT...
*After the initial month of treatment, then comes "maintenance", which lasts for ONE YEAR...and during that year, you continue to experience the flu-like symptoms. "Some patients have such a decrease of quality of life that they can't work, they become depressed, and some have even committed suicide." Can you imagine feeling like you have the flu for a whole year? It makes me sick just thinking about it.
*Case studies from people taking interferon for melanoma are inclusive. Of course, some people react favorably to the treatment (Judy Terry, for one) and have no regression. Others see no improvement, even after the year of maintenance. In other words, there is no real proof that interferon will increase survival of melanoma - but there is plenty of proof that it will cause a lot of suffering while it is meant to heal.
Dr. Grossmann looks me in the eyes. "I want to give you the choice of whether or not you want to have this treatment," he says. "But I want you to choose with your heart and not your brain. If you are the sort of person who is looking at this situation and saying, I want to do everything - no matter what - to survive melanoma, then you should do it. If somewhere down the line you think you'll have any sort of regret of not taking interferon to improve your survival chances, you should do it. But if your heart is telling you that this is not the path for you, you should listen. It has to be something you want to do, no matter the side effects and the grim statistics." And then...he waits for my answer.
This is what I have been praying for. I so dreaded this doctor walking into my exam room and extolling the virtues of modern medicine, including interferon, and telling me that any suffering was in my own best interest in the long run, and then handing me a schedule of treatment dates that had already been made in my behalf. And little ol' me, saying, "Yessir, whatever you say, sir..." What a relief to look inside my heart and listen to the Spirit.
I take a deep breath and tell Dr. Grossmann - and the other four people in the room - that because of my experience with Dr. Bradley's assessment of interferon and my friend, Judy's, belief that her interferon treatments seven years ago are now causing other health issues in her life today, my heart - and brain and body - are telling me NOT to do these treatments. "I have six precious grandchildren," I say, and the tears come freely, "and I don't want them to see me have that kind of a life for a whole year. And I have a 14 year-old daughter who needs me - I need to be a mom to her."
There are many wet eyes (I remember Carolyn saying she has a 15 year-old), but Dr. Grossmann's eyes are bright and he's smiling. "I want you to know that I'm happy to hear you say this," he says. "I think you've made the right decision. We'll go forward with Dr. Avizonis and the radiation treatments, and you'll come back and meet with me for regular scans, starting in June."
I know this is another tender mercy. I know God wants me to live to see my grandchildren grow up. I know He wants me to see Janessa married and happy. I know that the radiation treatments will be successful - and that any of those side effects will not diminish my overall sense of my divine nature. I am a daughter of God! He loves me. He has given me every blessing, including these wonderful doctors and nurses who are specially trained to help me. I will live the next year...and the next and the next... and find joy in my journey.
I've already got an appointment tomorrow morning with Dr. Avizonis to start the "mapping" for my treatments. And so, I go forward, following my heart...
Wednesday, April 13, 2011
April 13, 2011: Today I'm thinking about my wonderful father-in-law. He would be 91 today. He was a sweet, humble man and I'm grateful I got to know him for so many years. I know he's in a happier place now, beside his sweetheart. We miss you, Cal.
Last Friday morning (during our Spring Break), we were in the car on the way to Chelsea's. Dean decided he needed 2% milk for his breakfast, so we stopped at the Maverick down the mountain pass from the villa. Ness and I were waiting in the car when someone knocked on my window. It was my little sis, Dionne! She and her four kids had packed up from staying with Mom and were on their way out of town. She said that as she drove away from the villa, the Spirit said, "You should stop at Maverick." She thought, well, I should get gas, but I don't really need to stop at Maverick - and she kept driving. As she stopped at the light and turned the corner, the Spirit again said, "YOU SHOULD STOP AT MAVERICK." Dionne said the prompting was so strong, she put on the brakes and pulled into the last Maverick driveway and drove up to a gas pump. As she stopped the car, she looked up - and saw our car sitting there in a parking place. Coincidence? I think not. One more time to give hugs and say our goodbyes and tell each other "I love you" before the family got on the road for their long journey home. Thanks for following the Spirit, Dionney. I love you.
Yesterday, when I picked up Nessi from school, I asked how her day went. "Good," she said, and I said, "Mine was good, too," and proceeded to tell her about the visit with Dr. Avizonis. Suddenly, she asked, "You went to the doctor today?" When I nodded my head, she said, "I forgot to wear my bracelet. I've been trying to wear it every time you have a doctor's appointment." The "bracelet" is a precious gift she got from one of her Young Women leaders. It has a little heart charm that is inscribed, "Miracles & Hope." I thought that was the sweetest thing, that she would want to wear it every time I go to the doctor.
And when I think of all those who surround me and give me hope, I know there are no coincidences in life. I am at this place at this time with these people because it was always meant to be. God knew. He knows the beginning to the end and guides our steps. It is amazing.
Tuesday, April 12, 2011
April 12, 2011: This morning, Linds and I make our way to the Utah Cancer Specialists Center. How many times have I driven by this building, oblivious to the people coming and going to treatments, and the doctors and nurses who are dedicated to combating this wicked disease of cancer? I have led a sheltered life, not knowing the suffering behind the walls and doors of the world. In we go, straight to the desk under the sign, "Radiation Treatments". Ouch. It hurts already.
The nurse manning the phones and the computer is Allison, and she is hilarious from the get-go. She congratulates me on my pronunciation of Dr. AVIZONIS's name, especially when she learns that this is my first visit. (Good thing she didn't ask me to spell it first - I only learned the correct way after I grabbed her business card off the counter.) She laughs and makes jokes, and I feel somewhat at ease. As I'm filling out (more) paperwork, she "hands me over" to an advocate, Sherry, who will help me with billing and insurance and all the stressful things that are non-medical. Sherry invites me and Linds into her office and goes through a booklet about the programs that are available through the center. She says, "I don't know if you have a teenager or not," and I say, "Yes, I do. She's fourteen." She proceeds to tell us about a weeknight program open to teens who have a parent diagnosed with cancer. Suddenly, I am hit with sorrow for my little girl. No one should have to go through this, and my heart aches for her. If I'm determined to survive this menace for anyone, it's for her. She needs her mom as she grows up. I shed a few tears for Janessa.
We hardly wait a minute after finishing up with Sherry before cute Allison calls us to Dr. Avizonis's office. She quips, "It's quite a maze back here - I think the designer was Dr. Seuss!" We go into a room and she takes my blood pressure. Sky high. Allison doesn't faint away - she laughs. "Considering what you're going through and the place where you sit right now, this is normal," she says. Not really, but it's comforting to know I'm not the only one with "white coat syndrome" around here. She says Dr. A is looking over my "films" and will be right in. Linds is looking at the brochures in the packet Sherry gave us, and we both get a kick out of an ad for "free housekeeping" for patients undergoing chemo and radiation treatments. "Could you come live at my house?" says Linds, but mine is definitely in need of some attention, too.
Dr. A is middle-aged and doesn't appear to look like a doctor. She's dressed casually (no white coat) and gives both Linds and I a firm handshake. I like her right away. She admits that she could have read my whole story in the time it took to download the film from my scans. She's good-natured about being a little computer illiterate, though I'm sure she is a pro at what she does, off and on the computer. She asks me to tell my tale from the beginning and then looks at my surgery wound and deftly feels my neck, back, and under my arms. We ask questions, Linds and I (but mostly Linds because everything feels overwhelming at first). Again, we ask, why am I here if melanoma is resistant to radiation and chemo? Dr. A says, "That's an old wives' tale." Really? Then, she clarifies. Melanoma comes in many, many diverse strands and some are very resistant to radiation and some are highly sensitive to it. Even my own melanoma cells could be mashed up to pieces and put in separate petrie dishes, and some would grow very slowly and some would spread like wildfire; some would shrivel up and die with the radiation gun pointed at them and some would thumb their noses at it. That's why it's so hard to treat - the uniqueness of each strand is its own strength and weakness. Quite simply, she tells me that because 6-7 of my lymph nodes tested positive for cancer, there is a 50% chance that I'll have a recurrence in my neck; with radiation treatments, that chance goes down to 10-15%. I like that much better. That's why I'm here.
She is happy to learn that I'm seeing Dr. Ken Grossman at the Huntsman Center Thursday. She says he's a younger doctor, a melanoma specialist, up to date on all the newest and latest. She says he'll make recommendations and throws around words like "systemic treatment" and "immunity therapy", and I have to ask what that all means. Systemic treatment will work for my entire body, from the bottoms of my feet to the tips of my hair, the whole "system". She mentions chemotherapy, which makes me cringe, and she also says "infuron" (not sure how to spell), which also makes me uneasy, since Dr. Bradley (and my friend, Judy Terry) has told me that it is a tough drug that "wipes you out". Don't want that. Now I'm thinking radiation sounds pretty good. It's all relative, huh?
Now, we get down to what radiation treatments will be like: 5X a week, Monday through Friday; 15 minutes, 30 treatments (or 6 weeks). She says to begin with, they put you on the table and position you exactly how you'll be for the treatments. To keep you still, they make a "cast" of your neck and head and shoulders and chest out of a material that acts a little like paper mache with little net-like holes in it. After they mold it to you, it hardens and becomes the "guide" to keep you still. Dr. A will also make a "map" of me to show the computer exactly where to put the radiation and how intense the dosage should be in certain areas - more in the vicinity of where the initial tumors were and less in places like my vocal cords (yes, thank you, I'd still like to be able to sing!). She said the mapping is a week-long procedure, which involves several other specialists and technicians to get everything just right - because, as she says, "We don't want to have any 'oops' in radiation treatment." I'm stunned. It all sounds so interesting, it's hard to believe it will really happen to me someday in the near future.
Then, she does her doctor-ly duty and explains the side effects. Yippee. Sunburn-type burn in area of treatment, usually starts after the third week. Sore throat, usually starts after the second week. Loss of taste, due to taste buds dying. (Linds and I joke that it's a great diet, but Dr. A is quick to explain that she will nag me to eat and not lose too much weight, as the body heals faster and better when it's not in "starvation mode". Okay. Right.) Some hair loss, mostly in the area where the radiation hits; so, in my case, it will be in the back at my neckline. She says I won't lose any on top and that it shouldn't be that noticeable. If so, I'm definitely looking into wigs. Saliva may become thick and goopy - doesn't that sound wonderful? But worse, because of the loss of saliva and its power of washing bacteria and germs off my TEETH (did I know saliva did that??), I may be susceptible to more cavities and even tooth loss. Holy cow. I feel myself crumbling before my eyes. She advises that I see a dentist and get some extra attention to the right side of my mouth - extra fluoride treatments, extra fluoride toothpaste, more frequent exams and cleanings. Here goes my thought process again - how much is THAT going to cost? Yikes. And of course, physical and emotional weariness - that by the end of a week of treatments, I'll feel like I've been run over, again and again and again. Delightful. What a great thing to look forward to.
But, here comes that hope again. Dr. A reassures me that, along with Dr. Grossman, we are a TEAM. We'll take what he suggests and we'll combine it with the radiation treatments - and she says, "Someday this will all be a bad story you'll tell your grandchildren." I leave her office feeling hopeful. It all sounds scary, but she has prepared me so well, I really have no fear. She has explained everything so thoroughly and precisely that I now know exactly what's going to happen - the unknown is known, the plan is made, the path is clear. My prayer tonight is that Dr. Grossman's part of the team plan will be just as clear, just as hopeful, and just as fearless. And that together, we'll all - and that's not just me and my doctors, but my whole fantastic family and all my faithful friends - will conquer the giant looming over us and smash him down flat, never to rise again. I've seen miracles and I know there are more out there for me. One step at a time. Thankfully, I've got people like Dr. Bradley, Dr. Avizonis, and Dr. Grossman leading the way with their bright torches of knowledge and experience - and compassion - held high. Lead on...
Monday, April 11, 2011
April 11, 2011: For the past few days, I've been on "Spring Break". I packed my scarves, but they never came out of the suitcase. I wore my pink ribbon bracelet and "Forward" cancer ring, but tucked them away after the first day. I just wanted to be a normal daughter, sister, wife, mom, and Grammy and not have to think about cancer at all. I am reassured that my hair has grown long enough that it covers the worst of the wound, so unless someone was standing hip-to-hip and staring at the tracks down my neck, they wouldn't see or know. It's a relief at this point - and could even border on denial. But if I can forget this thing that looms over me and is never too far away, I'll take every second of memory loss. I helped my daughter with her babies. I played games with Lachlan. I went shopping. I drove the car, just for the scenery change. I snuggled a sleeping newborn. I watched a movie. I ate custard with oreo bits and cashews. I ordered Chinese. I put a curling iron in my hair and wore perfume. Normal things that have come to feel not-normal in my new life of doctor visits and sometimes scary thoughts.
This morning, my little grandson called (I think he has me on speed dial) and said, "Grammy, did you look at your calendar to see when you can come back down here to my house?" I looked and saw the doctor appointments scheduled for Tuesday and Thursday of this week - and the looming blank spaces where more appointments will probably be "penciled in" before too long. I wished I could erase it all and write his name over the whole month. "Hopefully, it will be soon," I said. But, for both of us, it won't be soon enough.
So, this is another thing I've learned so far. Don't take anything for granted - not even the quick shower and out the door in fifteen minutes - not even sleeping on BOTH sides of your head - not even being able to be-bop to music without feeling a zing in your neck - not even sitting at a computer without the ache of a muscle that's doing double duty for something that was cut out - not even thinking "miracles and hope" without it meaning the difference between life and death. Couldn't it just mean the hope of spring after a freezing rain? Couldn't it just mean the hope that a beautiful baby brings to a family? Does it have to mean staying alive to see my grandchildren have babies? I'll always be grateful for normal. Normal will never be boring or unnoticed again.
Tuesday, April 5, 2011
April 5, 2011: This morning, Linds and I go to see Dr. Bradley for another post-op check-up. He looks at my wound and pronounces the good news that it is healing well. He tells me that in the "valley" where the skin is diving inward instead of lying flat, I'll need to clean that area with a Q-tip for a while. I admit that I am still leery of the whole tangle of incisions - that I have yet to see the "big picture". Maybe it's time. Maybe I need to drag out that hand-held mirror and get a really good view. Maybe. Even touching it makes me shudder.
He confirms the two appointments that were made with the different radiologists, and I tell him that I canceled one and kept the other (didn't tell him that I kept the one that was most convenient to ME). He says that's fine and that the reason he made the appointment with Dr. Sause was because Dr. S was in the room when the Tumor Board made their recommendations and looked over my file. (Isn't that a strange thought, that a group of strangers - educated doctors and specialists - actually looked at my little ol' tests and scans and lab work and biopsies and made a determination for treatment? I feel like nothing will ever be private again, that I am totally out there from now on.) But he assured me that Dr. A will also be able to give me the care I need as a next step. That is reassuring.
Then, he asks if I have any questions. Yes, I say, and I've come prepared - I've written them down in my trusty notebook. He says, good, let's hear them - and then he settles onto his stool to give me his undivided attention. (Will I ever be able to tell him how much this means to me?)
Me: When can I put Vitamin E or lotion or ointment on my wound so that it doesn't feel so tight? (I'm not counting the Bacitracin that I've used since the day after my surgery.)
Dr. B: Vitamin E has not really been proven to make any more of a difference than, say, Vaseline, in the healing of scars. I recommend a product called Aquaphor. You can slather (well, he didn't say slather, but that's what I want to do) on as much as you'd like. (I bought a jar at Wally's and I'm trying it tonight.)
Me: Am I now at a higher risk to develop more cancer cells when I'm out in the sun? Do I have to buy a hat to protect my scalp? Will I always have to wear long sleeves in the summer?
Dr. B: No, no, and no. If you had basal cell carcinoma or skin cancer, I would tell you to stay out of the sun. But melanoma isn't always caused by sun exposure. We find melanoma in children who haven't yet experienced sunburn and intense exposure to the sun, so it's not specifically related to the sun. You should wear sunscreen, but you don't have to wear a hat.
Me: Is the tightness in the muscles in the back of my head on the right side (and down into my back) related to the surgery?
Dr. B: Yes. Maybe you need to have some physical therapy. Let me write out a recommendation. (cha-ching, cha-ching)
Me: Are the little zings and surges I feel under my jaw nerves that are waking up?
Dr. B: Yes. They are healing and coming to life.
Me: (this was the biggie) What does radiation do? What will it do to me - and what is its purpose for me right now?
Dr. B: The goal of having radiation treatments is preventative. We want to keep the cancer in a localized area and zap it before it can grow or spread to other places. That's why you will get the treatments in your neck. The radiologist will determine the intensity of the radiation and the duration of the treatments. Sometimes they do big blasts for a short period of time and sometimes they do little spurts for a longer period of time. You can expect to have certain side effects, like skin irritations much like a sunburn, itchiness, flaking, drying up of salivary glands, drying up of wax in the ears, and a sore throat. Everything the radiation touches is affected. The treatments could go on for a couple of weeks or a couple of months. Four weeks after your last radiation treatment, you will come back to me and we'll evaluate. (Yay!)
My thoughts are whirring. Will my vocal cords by zapped, too? Will I feel like I'm being burned? What else will the radiation kill, besides the bad cells? I feel like a human guinea pig. But, on the other hand, I have to be thankful that there are options, even if it is shooting poisonous x-rays into my body. Kill away, if it will keep me alive.
On a positive note (tra-la-la), I decide to go to chorus rehearsal tonight for the first time in almost a month. I get all teary just driving up to the building. One friend says it best: "This is my two and a half hour respite from my crazy world - where I can forget everything else and just sing." That's just how I feel. I discover that I am not so far behind that I can't catch up, and the music stirs my soul. It is good to open my mouth and hear a melody come out. Will I be able to perform in a couple of weeks? That remains unclear. But, this is certain - if I can stand and walk and smile, even with a "sunburned" neck, I'll be there, singing my little heart out. Take that, Goliath. You can't beat me when there's a song to be sung.
Saturday, April 2, 2011
April 2, 2011: Didn't stray too far from the couch today. Listened to the first two sessions of General Conference. I loved Elder Kent Richards' talk on the lessons of pain. He is a retired surgeon, and he said that in his professional life, he was often the cause of pain as he tried to heal people. But all in all, pain teaches us patience, faith, fortitude, and educates us on what we came here to earth to lean. I jotted down some notes:
"Christ's most significant work is ongoing to bless us daily, to heal us by His power. He chose to be afflicted with pain and suffering to better understand our needs. He chose to learn by His own personal experience. He heals all who come to Him, each blessing suited to our own needs. All pain can be soothed, all worry and fear swallowed up in His encircling arms. All of us have angels surrounding us in our pain."
I also loved the story Sister Jean Stevens told of Liam, a little boy diagnosed with an aggressive form of brain cancer. He had to undergo numerous radiation treatments, which required him to stay perfectly still for long periods of time. He didn't want to be sedated because the medication made him feel funny, so he asked if his daddy could talk to him during the treatment. Hearing his father's voice calmed him down and gave him the strength to lie still. Just as Liam's father spoke to him and soothed his fears, so does Heavenly Father speak to us in our pain and suffering. I hope I can be as brave and strong as Liam when it comes my turn to lie still and listen to my Father's voice.
I'm drawn to the messages of hope and encouragement and winning the battles of our lives - I get teary and emotional. I suppose it's because they hit so close to home. I've been praying for comfort and I know my prayers are being answered daily. I'm eternally grateful for family and love and miracles and the healing blessings that are coming to those I love in their times of need, too. We're all in this together.
Friday, April 1, 2011
April 1, 2011: Tear off the old calendar sheet of March and welcome April!
After a horrible nightmare the night before last, I resolved not to take any more Loritabs for pain. So, last night I took three 200mg Ibuprofen before bed. Whether it was that adjustment or the whirring of my brain or not finding a comfortable spot on the two stacked pillows I've needed since my surgery, I didn't sleep well. When my alarm went off at 6 AM this morning, my only thought was how soon could I crawl back under the covers - and still get something accomplished today. I've needed to shop for groceries - Dean had to go to Maverick the other night for milk - and the gas gauge on the car was dipping dangerously below empty. "Getting ready for the day" takes me eons longer than my usual half hour these days - I'm lucky if I can get out of the bathroom in under an hour, let alone dab on some makeup and do something with my crazy hair that acts as both a camouflage and a sign of healing life.
Travis, a clinical assistant from the Huntsman Cancer Institute, calls today. He's a very nice, personable young man, and I like him instantly. He begins by capturing all my pertinent information - all the who, where, whats of this month-long journey. I breathe a prayer of gratitude that from Day One, I've keep a notebook of places, procedures, and doctors because those are the very answers Travis wants. He asks if I remember the date of my diagnosis. "Yes," I answer, "it was March 7." "Do you remember what year?" he asks. I laugh shakily. "Just one month ago," I reply, and I hear his sharp intake of air. "Oh," he says a bit more tenderly (or maybe I just imagine it). I wonder if this is unusual so soon in the game. Am I a higher risk - or am I just blessed to have a doctor like Dr. Bradley who pulls me into the arena without allowing me time to think or waver? I like to think it is due to Dr. B that I am moving forward at Olympic speeds. For the next 20 minutes, Travis gathers information, talking to himself as he enters "me" into the catacombs of his computer, to be remembered now and forevermore. When it comes time to make my appointment with Dr. Grossman, I pretend to be brave and ask if it's possible to push the date into the week after next so I can go be with my kids (I couldn't bear to lose the ground I gained after yesterday's fiasco!). He says he's glad I spoke up, because the next available appointment is actually for April 8, one of the days I hope to be snuggling a baby. I hear him typing away on his keyboard, looking for another spot, and he admits that the doctor will be out of town himself for two weeks in April. "Hold on," he says, "I'm going to go talk to the doctor and see if we can squeeze you into a time before he leaves." He puts me on hold and I'm listening to some wonderful orchestral arrangement and thinking, oh, please Heavenly Father, another tender mercy, please - let him find something that will work for all of us. Sure enough, when Travis returns, he gives me an early morning appointment on April 13 (which a few hours later is changed to April 14). I am set, ready to go, and it hardly hurt at all...unless you count the butterflies that are already forming in the pit of my stomach.
I pick up Janessa from school and together, we go to the grocery store. I already filled the car with gas this morning, standing at the pump in my glasses and my slippers. I tell her that I feel naked and exposed because I'm not wearing a scarf to hide my wound. She matter-of-factly states that "no one can see it, Mom. It's behind your hair." She's right. We people don't even look at each other, do we? I just feel so "out there". I've also noticed that the tightness of my healing skin makes me keep my head lowered a bit to ease the pain. I feel like a very old woman. So, I walk through the store with my neck as elongated as possible, and when I feel myself collapse inward, I lift my chin. Oh, for the day when there is no stinging or soreness, no fragile new skin, no swollen spots that make me cringe - when I can slather Vitamin E oil or Baby Magic lotion or Oil of Olay from the tip of my ear to the base of my neck and just let it seep into the crevices of my scar. $100 later, we load the groceries into the car, grateful for sustenance for another week or so, and doubly grateful that we didn't see anybody we knew and had to chat with like all is well in the world.
I talk to Chelsea today and hear the healing in her voice. The tears are still close to the surface - and we both take our turn at letting them fall - but she's tough, as well as beautiful. She's tired, of course, and I hear the longing in her voice for all the things left undone, unwashed, unread, unopened, unpainted. And yet I know she and Rob will be back on their two pair of feet before long, adjusting to the routine of a bigger family and a bigger life.
Tonight, I get kisses and hugs from my three little B-girls. They crawl up on the couch where I am, snuggling into my lap, asking me to read them a book. They make me smile and laugh - and forget. Ally shows me her beautiful smile, Avery brings me the Knuffle Bunny book, and Jane yells, "Da Da", at the dogs in the story. These three little princess girls are just the medicine this Grammy needed tonight. Hopefully, I'll dream of them and not wake up once before morning.