Tuesday, June 28, 2011

Normal for a Change

June 28, 2011: It's officially summer and I'm having a hard time settling down to work during the day when I'd rather be doing so many other things! Ness and I stay up late watching TV, sleep in past 9:00 AM, dawdle our way through showers and breakfast, and pretty much "play away the day". It's great...until payday comes...

Friday, I went back to Dr. Nielson for the follow-up to my colonoscopy. I was there all of FIVE minutes! He gave me a copy of about six pictures (yikes!) showing my NORMAL and HEALTHY colon, and even joked that I should post them on my blog. Yeah. Right. The minor biopsies he took during the test came back normal, as well, so I do NOT have irritable bowel syndrome. What a relief. I just need to eat better and get rid of stress. Okay, as soon as you figure out how I do that with limited taste buds and the ever-present awareness of fighting melanoma and healing and surviving day-to-day life, I'll follow it to the letter.

As for my unending (at least, so far) frustration with my taste buds, they are still wacky. I am tasting more things, but I have also got weird tastes going on. There is a constant metallic/saccharin-sweet/tangy (very hard to describe, as you can see) taste in my mouth that drives me crazy. I brush my teeth and even gargle with a mild mouthwash, and it's still there. It affects everything I eat, but especially everything I drink: water, juice, the Carnation Instant Breakfast I drink most mornings, everything. I took a sip of root beer the other day and could only taste CINNAMON! How weird is that? But, on a good note, I ate corn chowder one night for dinner, some cream of broccoli soup another night, some broccoli spears (without butter - butter tastes like oil), and one of Lindsey's homemade French Dip sandwiches last Sunday. Hooray! Something nourishing in my tummy for a change!

It's been three weeks today since my final radiation treatment. Time has flown by! I guess I still won't be able to enjoy a nice 4th of July BBQ, but maybe I'll be able to eat a burger that tastes like a burger or a slice of pizza that tastes like pizza on Pioneer Day (July 24). I hope so! It will be nice to feel normal for a change.

Thursday, June 23, 2011

Summer Heat

June 23, 2011: It's HOT today - and I am NOT complaining. We've had such a weird, wet spring that I'm ready for a little warmth on my skin. Today, I donned my brown straw hat and slathered on some sunscreen for 20 minutes of light yard work - swinging the weed-eater over the tall stuff against the house before Dean mows and taking care of the spent daffodils in my flower bed. In that same bed, I have the most delightful new peony bush - the blossoms are light pink with a spiky cream center! They make me smile. I was tempted to wash the car in the driveway, but decided against it. Maybe earlier in the day next time. My car is dusty and grimy and needs a good scrubbing, inside and out. Could be the top priority project for the weekend.

Last night at our RS presidency meeting, my sweet friend, Candice, prayed that my "taste" would come back. I could have hugged her. This is definitely the trial of my patience right now. My tongue looks like it's healing - the color is slowly coming back and the sores on the right side have all disappeared. But, I am still unable to taste normally and my mouth has seemed very dry the past few days. I eat the bare minimum and feel the (bad) effects of a not-very-balanced diet. My main food choices right now are eggs (blah), oatmeal (blah), string cheese (blah), Carnation Instant Breakfast (blah), plain hot dogs (blah), and V-8 Fusion (yum, but leaves a nasty taste in my mouth after I drink it). Oh, wait, I had a banana/pina colada Slurpee from 7-11 yesterday! It wasn't too bad! Sometimes I fantasize, "oh, maybe that will taste good," but then my brain says, "No! Don't try it! It will be awful!" So, I starve. And I hate it. There, I'm done complaining about that.

I have shorts on today. My legs are the color of an eggshell. I guess I'll never "lay out" to get color again. But, it's okay. I don't have cancer. It's all worth it.

Monday, June 20, 2011

Fathers (belated)

June 20, 2011: I try really, REALLY hard not to turn on my computer on the weekends unless there is an emergency (like printing off something that needs to go to church at 9 AM with me) or I'm dying to Google something very important (see my question below). It's my way of "resting from the world" for a few days. No Facebook, no blog, no annoying ads from companies I will never buy from, no work to log into, no questions to answer. Sometimes a dark computer screen is nice. But, in doing this, sometimes I miss SHOUTING out my own comments on what's "trending" over the weekend, i.e. Father's Day Sunday. So, here I go, belatedly, on Monday.

I have two wonderful grandfathers. Different in many ways, but so alike in others. One a wiry businessman, one a quiet farmer. One dashing in appearance, one with mud on his boots. One with a house in the city, one with acres of grain and cows. One a father of five, one a father of eleven, including twins. Both hard-working, both sensitive to their wives, both fun to be around, both the essence of love and service. I miss them.

I have a wonderful father. My hero, my supporter, my rock, my example. Sometimes I dream of him, and the dream always starts where I come through the front door and he is there to hug me. I feel his broad, strong shoulders in my arms and I kiss his whiskery cheek. He is smiling and then, we're laughing. I miss him.

I have a wonderful husband. He is quiet, patient, and rarely complains. He has given up a lot of his dreams in this life and I hope there is compensation in the life to come for all his sacrifices. He suffers silently, but takes on the world for his family. Last Thursday night and Friday were, for me, just one more invasion of my shattered privacy over the past three months, and I realized my hubby has also had to witness all the things that are better left unsaid and undone and unseen. But, he endured it along with me - eating his meals alone, waking up every time I crawled out of bed and turned on the bathroom light, watching me put on another hospital gown and get poked with another needle and wheeled away on another gurney. And though the final result was "no colon cancer, no polyps, no more colonoscopies for 8-10 years", there was a biopsy taken that my doctor suspects is due to "irritable bowel syndrome" (which I had to Google, as shown above). Lovely. Stress-related? Absolutely. Eating five or six (small) bites of food a DAY because food tastes nasty? You betcha. But, I still have to report to him at his office this Friday. So much for my holiday from doctors and hospitals...

To all the fathers in my life, I'm grateful. I love you, I admire you, I'm so happy to have been a part of your life. Now and forever, through all the good and bad. You make me stronger, so I can fight all battles. Thanks for standing by me, literally. You're the best.

Thursday, June 16, 2011

The Number Game

June 16, 2011: I love numbers, I admit it. Especially when they start to line up and satisfy my "symmetrical" life (yeah, I'm not abstract at all - just ask my mom!). Here are some of my favorites:

*Sister Dionne's first 3 kids - all born on the 28th of the month (last born asserted his uniqueness by being born five days after the 28th).
*Cute Boynton niece born on 8/8/88.
*I graduated from high school in the bicentennial year of 1976. Chelsea graduated in the Class of 2000. Ness will graduate in 2015 (I'm sure that's somehow significant!).
*Dad was born in 1939. I was born in 1959.
*Grandpa Boynton born in 1920. Mom born in 1940. Troy born in 1960. Aaron born in 1980. Jeddy born in 2000. I can always remember how old they are!
*My kids have great "last digits" of phone numbers: "3030" - easy to remember, fun to say. "1982" - year of birth. How cool is that! Mine, by the way, is not cool.
*The 9s and 28s rule in our family. We were married on 2/9/79. Aaron was born on 4/9. Chelsea was born on 4/28. Ally was born on 8/28. Avery was born on 8/9. Knox was born on 3/28. My daddy was born on 1/28. My darling niece, Malyree, was born on 2/28. (And then you have all those Burton kids born on the 28th, too.)

Now, check this out: First biopsy surgery - 3/3. Diagnosis - 3/7. Major surgery - 3/17. Final day of radiation - 6/7. Final procedure recommended by oncologist - 6/17. Aren't numbers awesome?

After tomorrow's procedure, I will go four and a half weeks without seeing a doctor or the inside of a hospital. Now, those are numbers to shout "2 - 4- 6- 8 - What do we appreciate? EVERYTHING!" (Sorry, had to do it...)

Tuesday, June 14, 2011

Quiet Days

June 14, 2011: One week post-radiation! It feels awesome. I'm starting to notice a little healing in my "sunburn". Not quite as much peeling and MUCH less pain. I still know it's there, but it's not bad enough to cry about. Wish I could tell a difference with the taste buds. Tried to eat salsa last night and it's just not happening. I could only taste the chip. How disappointing. I've been swishing with the Magic Mouthwash this past week, too. I had peanuts and a few walnuts (tried to eat Honey Walnut Shrimp from Panda Express one day for lunch) and they made my tender tongue hurt again. Sheesh. Wish I could wave a magic wand over it. It's still grayish instead of rosy pink, so I guess I shouldn't expect too much. One of these days though...

It's quiet around my house this week. Janessa went home to St. George with Mom last Saturday, so I'm alone during the day. Dean has been working some overtime and leaves for work at 5 AM. I still wake up about 7:00 with the sun coming in the windows, but have been able to roll over for another hour most mornings. Even though my girl doesn't make a lot of noise when she's home, I still miss her presence. I miss her coming out of her bedroom in the morning, all sleepy-eyed and mussy, and saying good morning. I miss her rummaging through the pantry for another box of cereal or a can of ravioli, sometimes within an hour of each other. I miss her quietly reading or surfing her iPod or catching up on her favorite TV shows she's recorded. I miss her fresh-out-of-the-shower at night and kissing me before she heads off to bed. Yep, I love that girl.

Today, I had to make a 3-day To Do list. Never considered how involved the prep is for a colonoscopy. I don't want to scare anyone off because I think it's extremely important to be tested, but good grief! It's a good thing they give you (almost) minute-by-minute instructions of what to do and when. So, starting tomorrow, I'll be keeping my list close at hand. And don't even talk to me about Thursday, because I will definitely NOT be leaving the house after 3 PM. I just hope I'm not too loopy Friday afternoon to enjoy a visit from my grands. When this is over, I'll be "doctor/hospital free" for 4 1/2 weeks. It will be heaven...

Friday, June 10, 2011

Summer Joy

June 10, 2011: Yesterday, Mom and I went to Huntsman Cancer Institute for my scheduled scan and lab work. Arrived about 10:30 - didn't leave until after 2:30. Had to have blood work done and an IV put in, but my veins were in hiding. The GOOD phlebotomist said she was determined to be patient, and I was grateful. Hate to be poked two or three times, just to see if maybe this vein or that will decide to cooperate. No luck on the right arm, went to the left. Tried several things, including a hot water balloon on the crook of my elbow. Felt pretty nice, but only after a few minutes did one vein decide to emerge. As she drew blood, the tech said this was one of the hardest draws she had ever done. (It was certainly the longest time waiting I'd ever had - usually the techs get impatient and just start pricking.) Got all those tubes filled with nice red blood, and off I went to the radiology clinic.

Signed in and was given two bottles of berry contrast. "Drink up," the girl at the computer said, "so you don't fall behind in the schedule." You don't have to tell me twice - I started gulping down that stuff right there at the check-in desk. I've learned (by observation) over the past 6 weeks at the USC Center that "berry" is the flavor of choice and straws help the nasty stuff go down better. Luckily, Mom had a straw in her soda that she let me use and it DID help. I was right on schedule, of course.

Mom and I decided that it's very hard NOT to be emotionally invested in all the people who surround you in those waiting rooms. We all know what we're there for, we all know what we share in common, and it's heartbreaking, to say the least. I was sitting by a man who read newspaper after newspaper and looked through countless magazines as he waited for his loved one to come out of the scanning room. Finally, I saw a pretty, stylish woman come out the doors and head straight to him and pull him up by the hands. I watched them walk a few steps away and stop briefly. She looked up at him and held his arm, and he said, "What?" She smiled and softly said, "All is well." I heard him sigh and pull her closer to him as they walked to the elevators. All is well. That's what we all want to hear. That's how we all want it to be for ourselves and those we love.

I put on the ever-so-fashionable "scrub bottoms" and followed the tech into the CT room. I drank the last bit of the contrast and laid down on the table. The tech asked if I remembered how the contrast feels when it comes into the IV and I said, "Yes. That's why I just visited the restroom." She laughed. The first scan was of my chest and pelvis area. When the warmth from the IV came, it not only came into my groin area, but burned in my wounded neck. That was a strange feeling, and surely came because of the radiation still there. (Dr. Avizonis told me it takes 12 weeks for the body to completely get rid of radiation.) All through the scan, I chanted "Miracles and Hope", and had to think of how frightened I was the first time I went through this procedure. This time, I was much calmer and much more hopeful that all would be well. The second scan was of my neck and head. I could just imagine the tech behind the window looking at my neck and wondering what in the world had happened. (Maybe not...maybe they see this all the time, right?) Quick as that, I was done. No one said anything to me about the results, so I had to be content to wait until my visit today with Dr. Grossmann.

This morning, we were at the Huntsman Center again by 9:00 AM. (By the way, that free valet parking is a lifesaver!) I only waited a few minutes before nurse, Annette, came to take my weight, blood pressure, and temperature. Then, she took Mom and I into the exam room, which was on the back side of the building and had a huge window that looked out onto the mountain. It was a beautiful day today and I loved the view of the budding trees and green grass. Soon, the Nurse Practitioner, Nurse Luckett, came in, along with a new member of the team who was going to observe the Melanoma Clinic that day. The first thing my NP said was, "Lisa sings with the Utah Symphony Chorus!" It was sweet. I told them about our September 9-10 concert and that it would be a wonderful event, and they both said they hoped they could come. NP checked me out, asked me a bunch of questions, and then asked if I had any questions. I wanted to know about the new melanoma drugs that have recently been approved by the FDA, so she explained that Dr. Grossmann was at the big cancer conference last week and had lots of information about it; but, mainly it was approved for Stage 4 melanoma, and as she said, "We don't want you to ever have to use them!" Then I asked about my scans and she said, "Yes, let's look at them now." Cool. So cool. It never ceases to amaze me what my body looks like from the standpoint of scans and X-rays. What a marvelous "machine" God gave us to maneuver this world. NP Luckett pointed out my vital organs, my bones, my brain, all the good stuff, and even showed me the difference between the left and right sides of my neck. She said that cancer shows up as round, white spots, but that there did not appear to be ANY round, white spots in anything she was seeing. "Your labs and your scans seem to all be normal," she said rather casually, as if she had just told me that the sky was blue. Mom and I nodded, just as casually, hoping that we were hearing right.

After I changed into a gown, Dr. Grossmann and the whole team returned. He began the conversation by asking about chorus, too, and I told him what I had told the others. He said, "I'd like to come to that. How am I going to find you in the chorus?" I told him I was on the back row, right in the center, and he asked if I could wear some little feely-doppers on the top of my head to wave at him! Cute! He also asked about Dr. Avizonis and my team at the USC, and I told him they were wonderful. He checked out my neck and said it felt "woody" (exactly!) and that I probably needed to do some physical therapy. He also asked about my "skin breakdown" from the radiation and then saw how I'm peeling and blistering and sore. He suggested an "anti-fungal cream" for the folds of my scar -"we don't want you to get a yeast infection there" (eww!), so now I'll be a little worried about that. He talked about being at the big cancer conference and that one of the focuses was on melanoma with an unknown primary source, like mine. He said that it was decided that these unknown primary sources are most likely on the skin (again, like mine) and that tumors come sometime after the body has unleashed its natural killer cells and eaten away the spot of melanoma on the skin (like mine!). He said that because of that, he was confident that we wouldn't find melanoma in my vital organs or in evidence in any of my other tests and scans, such as the mammogram, the PAP test, the eye exam, etc. I told him I was having a colonoscopy next Friday, and he said, "I'm confident that will be clear, too." Then - the moment of truth - he said that the scans showed two lymph nodes on the right side of my neck that were enlarged, but that it was probably an effect of the radiation and he was not worried about them. In fact, he was not worried about anything he had seen and - DRUM ROLL - there was no evidence of cancer anywhere - no evidence of melanoma anywhere! "I'll see you in three months for our regularly-scheduled scan."

I cannot express my utter and absolute relief at this BEST NEWS EVER! But, I have to say that I am not surprised. After my visit to the temple, after the many prayers in my behalf, after the priesthood blessings I have received, I KNEW this would be the outcome. I know I have seen miracles in my life, today being one of the best. I am so thankful to my Heavenly Father and my Savior, Jesus Christ. On we go, slaying that Goliath, until he's totally a memory of this period of my life.

I am anxious now to be healed of my radiation burn and to get my taste buds back and to have a normal tongue and throat again. Summer will be a joy, once I can eat and move my head without stinging and burning! I AM SO HAPPY!

Tuesday, June 7, 2011

Final Day of Radiation

June 7, 2011: Oh, happy day! This morning was my last radiation treatment. I am so relieved.

When Lindsey and I arrived and walked up to the usual back door entrance, we passed some workers who were using extremely loud machines; and when I reached for the door handle, it was locked! I thought, OH NO, they've closed and they didn't tell me - I'll have to come back tomorrow!! But before I could freak out completely, Mary (my favorite tech) pushed open the door and let us in. She said they were trying to cut down on the noise and make sure the door closed behind everyone who came in. Whew, that would have broken my heart to have to come back...

Lindsey finally got to see the procedure after being with me from the very beginning. What a champ! I was grateful that Mary was the tech on duty today - she was so kind to quietly explain everything they do and how everything works, even the technical stuff. Linds thought it was amazing. For the final time, I had to wear my mask and I kind of got a little teary when that last radiation blast finished - not that it was over, but that I had made it to the end. As I left the treatment room, I was given my mask - a unique trophy, I guess - and a cute certificate that all the techs signed AND a bottle of bubbly (I'll save it for when I can taste it!). I was weighed again (I'm down 26 lbs since my first surgery on March 3) and was able to visit with Dr. Avizonis. In her usual no-nonsense, this-is-what-you-can-expect way, she told me the progression of my healing from tomorrow on - first, my "sunburn" should heal (hooray, because it is a tight, stinging mass of peeling, dry skin); next should be my sore throat and the blisters on my tongue, and then, the return of the taste buds, which could take up to two or three weeks. She said the gradual healing of the taste buds is just plain weird and unexplainable; some people report that they can taste certain things, like salty food or sugar; others say that they can taste the first two or three bites of their food - and then, nothing. I joked with Linds that that would probably be a good thing, since my stomach has shrunk and two or three bites is about all I can handle right now. We'll see how mine behave. So far, they've been pretty standard to what everyone else goes through.

Linds said that while I was in treatment, Mary and Mark and the other techs mentioned how well I had come through the past six weeks. I couldn't have done it without all of them. They kept me feeling upbeat and positive and gave me a reason to leave the place smiling. I am so thankful that I was sent to the Utah Cancer Specialists Center and got Dr. Avizonis and the rest of the staff on my team. They are top notch.

Dr. Avizonis said she wants to see me in six weeks, and she was happy to hear that I'll be seeing Dr. Grossmann on Friday. She said that they'll continue to monitor me and make sure nothing pops up that they can't deal with right away. I like that. That's my goal, too.

So, now I'm home with the big white mask. I took pictures that I emailed, asking, "What shall I do with it now?" I've loved the suggestions: wind flowers through it for a planter, paint it purple and stuff it with treats like a pinata, use it to go jousting, bury it DEEP, use it as a form to design hats, put a firecracker in it and blow it up on the 4th of July... the possibilities are endless. I'm just thrilled that I don't have to put it on EVER AGAIN!!

Monday, June 6, 2011

It's Not All About ME

June 6, 2011: First day of summer vacation from school! Ness is already settled into her favorite reading spot with a stack of books beside her. That's my girl.

Now that I'm coming to the end of my radiation treatments (TOMORROW is the last one!), I recognize that not everyone cares to hear all the minute details of this journey. I guess I'm kind of a blabbermouth when it comes to updating anyone who casually asks, "So, how are you?" I don't stop to think, "Do you REALLY want to know? Or are you asking out of habit?" Generally, I launch into the latest side effects, which I have to admit are pretty gross, and I see people cringe inside and start to back away, as if to say, "Okay, too much information, thanks." I know I've said it before in this blog - I really DON'T have to share everything, but sometimes (well, almost all the time) I do, and I apologize. Really. I'm sorry.

I know I'm not the only one to go through this trauma. I know I'm not the only one who's got (or had) cancer and has to go through (or has gone through) radiation or chemo or daily doctor visits or scans or tests. I know there are a bazillion people out there - some in my own family and neighborhood - who have battled silently and continue to live quietly, as if nothing happened to tip their world upside down. I salute them, I really do. I greatly admire their courage, their independence, their tenacity, their "just go and get it done" attitude, their ability to keep a smile on their face and hide the unmentionables in a corner somewhere. I am amazed at the way they nonchalantly say, "Yes, I've had (or have) cancer - what about it?" Seriously, those people are Warriors with a capital W.

I'm not, I guess. I feel like I have to document, whether in type or by word of mouth, just what strategy was employed today - and all the other days - and what the outcome was: the casualties, the wounds, the losses, as well as the gains, the joys, the steps forward. I'm definitely a Private in the army, a new recruit, an initiate. And if I start spouting off like I think I'm the Top Dog, the 4-Star General, just pat me on the head and tell me to go to the back of the line. I'm still a greenie, a newbie.

Someday, I may get to the point where these posts simply say, "Great day. Nothing new to report. Having a wonderful life." I'll go back to my standard answer to the proverbial, "How are you?" automatic question, by saying, "Just fine, thanks." That's all anybody really wants to hear anyway. Someday, it will be true.

Saturday, June 4, 2011

The Peace of the Temple

June 4, 2011: Today, I am eternally thankful to live 15 minutes from a temple of the Lord. All week I've been planning a lesson that I will give to my sisters about the temple, and over and over again, the sweet Spirit whispered to me, "Go. Participate in whatever way you can. Just go and be blessed." How could I refuse? I thought about going Thursday, but that was the day my mom left for Washington and I HAD to face the mountain of bills while I could concentrate on them. I tried to go yesterday, but that was the last day of school for my girl and I knew I needed to work as much as possible before she got home. Flimsy excuses...yes. So, this morning, I resolved to get up and put on a dress and GO. And all I can say is, wow. What a beautiful day. What a beautiful Spirit. What a choice experience I had.

I participated in one of the initial ordinances, which really takes very little time and effort on my part. But the blessings!! For my brief sacrifice of barely an hour, I have been strengthened and blessed to know that I WILL BE HEALED. From the top of my head to the bottoms of my feet, I will be healed. All my vital organs will be healthy and well and my brain will be powerful and strong. This is a direct answer to prayers, as I prepare this week to finish radiation and go in for another scan. I KNOW it will be clear. I have no doubts after this morning's experience. I can't deny the sweet Spirit that has confirmed this over and over again. I know it is true.

I thank God for the temple, His Holy House. I felt Him there this morning. The sun is shining, the sky is blue, and there is peace in my soul.

Thursday, June 2, 2011

Quiet Gifts

June 2, 2011: Yesterday was my boyfriend's birthday. I think this is the first year I haven't at least given him a card to celebrate his happy day. My only gift was a birthday kiss and a sausage McMuffin for breakfast. I hope he knows how much I love him and how grateful I am to have his quiet, solid support in my life. He is the anchor in my sometimes stormy days and nights.

I am overwhelmed right now by the abundance of quiet gifts in my life. My children (and I count my daughter-in-law and son-in-law as my own, too) bend over backwards to make my life easier and brighter, serving me with simple acts of kindness and sacrificing their own hard-earned dollars to ease my burdens. They never complain, they never hesitate - they simply give and give some more, often anonymously. I can never thank them enough. My mom, too, has been quietly serving me during this tough last week of treatment. I am very grateful for the clean kitchen, the extra blanket on my cold feet, the bag of groceries or take-out to keep us fed, and the loving concern for my physical AND emotional health. She is an angel.

And then, there are the quiet gifts that have been coming through the mail, often unsigned, or simply signed, "from someone who loves you." My cup (and my tears) truly runneth over. The words of encouragement, the expressions of faith, the quotes that I'm carefully re-writing in my journal brighten my days like a happy-face balloon - they lift my spirits and make me smile. And those who are quietly and unselfishly helping me wade through the mountains of bills are truly an answer to prayer. I pray every day for YOU, that you will be blessed for your sacrifices and know the joy of your Christ-like service. I thank you with all my heart.

I have three more days of treatment. I keep telling my little shrunken tummy that grumbles and aches for a good meal and my blistered tongue and my swollen right earlobe (can't get an earring in anymore) and the tight, sunburned scar tissue on my neck that "this too shall pass." I hope in the future I never take my sensitive taste buds and barely-there saliva for granted, and I am anxious for the day when I can savor a bite of food with delicious abandon and not gag on the sticky saliva that clogs my throat. But, most of all, I hope and dream and pray that this "killer" radiation has truly killed any inkling of a cancer cell, any whisper of something that thinks it's going to ruin my life. I feel certain it has been successful, that with all the pain and starvation and inconvenience and cost, it was worth it, every second. And there's another quiet gift...the miracles and hope that flood my wounded body. Cancer - and radiation treatments - cannot kill that. I have no doubts - only hope and faith.