Music & Memories

Tuesday, February 28, 2012: I love music. I think it has magical powers. I think it can change dark to light and negative to positive. It often brings me to tears. It always makes my heart sing. It is the one thing that can relax and comfort me when I'm feeling scared or hopeless.

Lately, I've made some awesome music memories. As a mother, I've always hoped that I've instilled the love of music into my children's souls - and now as a grandmother, I hope the same thing for my precious grands. They all sing, in one way or another. Even baby Knox tries to "sing" the hymns in church! They'll never know (well, maybe they will now!) how happy it makes me to hear them sing and see them enjoy music. And yes, listening to the radio totally counts!

So, back to those music memories - As the mother of a teenager, I ride the roller-coaster of real or imagined drama with school and friends and likes and dislikes right along with my girl. She has grown leaps & bounds in the past year, from a shy little mouse to an exciting, creative, mesmerizing young lady. And suddenly, music is one of her passions! Not only did she (finally) join the school choir - and LOVES it - but she has gone crazy for an up-and-coming boy band - four young men with tattoos and colored hair and tight skinny jeans. It will tell my age here to remember my own "crushes" as a 14-15 year old--David Cassidy, Bobby Sherman, Bread, Chicago, just to name a few--so I've had to look beyond the silliness of youth and see things through her eyes...and guess what? I've become a fan of these four boys, too! I will admit that I'm not crazy about the tattoos and some of the lyrics (which makes us both cringe every time and turn down the volume for a few seconds), but I admit that they are talented and adorable, in their own 21st century way. And so, instead of saying, "Oh, that's nice, honey, go enjoy your music on your own," I've elected to join her. In the past 6 months, this band has performed twice in Salt Lake City, and since they're not that well known YET (they're on tour with Taylor Swift in Australia right now, so watch out world - here they come!), we've been able to buy tickets for pretty cheap (first concert, $18; second one, $22). Their first concert was in August - very hot, very "close" in our "standing room only" venue; this second one was just a few weeks ago and was much more "bearable" for this old mom. I got to sit on a little wall ledge through the opening acts and then had plenty of space around me to jump and dance and clap and sing when our boys came on stage. J took a friend to this concert and they had a blast standing six feet from the stage in the press of hot bodies, looking into the eyes of their boys, and even catching the lead singer when he jumped into the audience at the end of show! The highlight of their lives (so far)! I can only say that I'm glad to have this bond with my girl and hope she'll always remember her funny mom dancing and singing with the rest of the crowd to "Forever Unstoppable"!

(Pictures top & bottom: J and I at the first HCR concert in SLC - August 2011; J and her friend M freezing in line for the concert before doors opened - February 2012. Proud to be called "Beautiful Freaks!")

Why Wait

Friday, February 24, 2012: It's been an interesting day, so I thought I'd talk about it. It's given me food for thought - maybe it will do the same for you.

Even before my diagnosis, I think I could be described as a come-what-may, laid back person. I'm basically positive (unless I'm struggling with my big weaknesses, which are usually financial) and I can generally see the "bright side of life." That's been a huge blessing this past year, when the world looked very bleak at times. But, really, I've had to learn and re-learn that PATIENCE is a God-given gift and it only comes after you've worn out your knees in prayer.

If practice makes perfect, I should be well on my way by now, don't you think? The w a i t i n g is the worst - waiting for tests to be taken, waiting for results to come back, waiting for procedures and treatments to be done and over, waiting for that ol' Goliath to load his slingshot again.

It's hard to wait for non-medical things, too - pay day, dinner out with my family, hugs from my grands, letters from friends, vacations, mornings you can sleep in, blockbuster movies...

This sounds kind of silly, but I'm also waiting for my hair to grow in at the nape of my neck (see the not-so-attractive picture of me with my "hair coloring" shirt on). The fluff that's growing in where the radiation killed the hair follicles is wild & woolly, curly & kinky. Very strange. And very gray! I called Wendy, my friend and new hairdresser, and asked for an appointment to get my hair cut and colored (I've always done my own), hoping she would say, "Sure, come on in right now!" Truth is, Wendy is a busy lady with lots of clientele who are hoping for the same thing, so when she said, "How about March 1?", I was disappointed and impatient. I want instant happiness NOW. So, I'm waiting...again.

Today, I was also asked an interesting question and I'm glad to say that I knew the right answer, thanks to Dr. Grossmann. I've been asked this question before in the past few weeks, but today it all clicked. "Why wait? Why not have surgery to have the 'spot' removed and then have it tested? Why go through another endoscopy and biopsy and wait for results AND then have surgery?" Good question, one we've all asked, I think. And here's my uneducated, but confident (thanks to Dr. G's expert explanations) answer:

There is good reason to have the endoscopy and the biopsy first to determine with certainty what this thing is because whatever it turns out to be, there will be a specialist to handle it from beginning to end. Dr. G is not that specialist - he specializes in Melanoma, specifically in the neck and head. This thing certainly does not fit that criteria. While my dear Dr. Bradley (who performed my two neck surgeries) would be my Surgeon of Choice, he has nothing to do with anything below the neck either. Dr. Adler is a Gastro-doctor, specializing in disorders of the bowels, stomach, intestines, etc., but he is not specifically a cancer doctor. If - and I'm saying IF while whispering "Miracles & Hope, Miracles & Hope" - if this turns out to be some sort of new cancer/tumor/whatever, a specialist who knows just what to do, just what to say, just where to lead & guide me will come to the rescue as a new member of my team. He (or she) will be beside me through surgery and whatever comes after. I feel reassured by that. It really is something that constantly amazes me. I also feel confident that this has not become an emergency situation - if my docs are okay with waiting until March 7 and beyond for results from the biopsy, I will trust them and wait as patiently as I can. I am not in any pain, I have no lumps or bumps or twinges that tell me there is something of concern lurking beneath my skin, and I am living each day with energy and strength. And miracles are still happening almost daily - today I had my normal "standing order" blood test at the lab (because of the blood thinners I'm taking) and the results came back "therapeutic" for the third or fourth time in a row. Dr. Beckstead messaged me that I don't need to go in for another blood test for a whole month, instead of bi-weekly. Now, there's something I am happy to "wait" to do. One of these times, he's going to say, "You know what? You don't need to take those pills again!" Oh, happy day!

So, we wait...and now you know why.

Kisses on the pocket

Thursday, February 23, 2012: Since it's been over a week since my last post, I thought I'd better let everyone know that I'm okay. We went south over the President's Day weekend and spent time with our family. Another whirlwind trip, but so worth it. I'm always inspired by my brave momma and my creative resourceful daughter. They both make my life full & happy. And kisses and hugs from my little grands is the best elixir ever! Thanks for the kisses on the pocket, Olive, you silly girl...

So, today, I decided to make a trip to the U of U Hospital to get a copy of my last PET scan to show to Dr. Bradley when I go for a follow-up appointment on Monday. I dropped off J at school and then joined the morning commute up the hill to the university. So glad I don't have to drive that route every day! It was windy and cold in the valley, but up by the mountains, it was spitting snow. It felt very strange to be in sunshine one minute and up in the clouds the next. It also felt good to be "passing through" the check-in and lobby area where other folks were waiting for appointments. I scurried along to the Radiology file room and was handed a bundle of about six CDs, all from my one scan. Poor Dr. B. For one thing, he's probably not that interested in my latest dilemma, and for another thing, it would take him much longer than my allotted five minute appointment to go through the discs. If he does care to see them, I'm hoping he can scan through a list of files and go right to the abdomen. We'll see. At least, I did my part in going after them today.

I also made a surprise visit to my niece this afternoon to see her and her precious 2-month old baby...and who should be staying with them for a few days but my Arizona sister! Bonus! Baby B is an angel who smiles all the time, even when she's hungry and wants a bottle, and mommy & daddy & grandma are crazy about her--as we all are! I'm so happy I got to see them all and get & give hugs. Families are fabulous!

(Pictures: Top is Grammy & Knox October 2011 - notice the funny lip, due to nerve damage during September surgery. Bottom is Great-Aunt Lisa with baby Briia February 2012 - lip is almost better, huh?)

Lovely Day

Tuesday, February 14, 2012: It's Valentine's Day. Wish I had sent all my "lovelies" a card and a chocolate kiss, but please know that I do love you all so, so much.

Last night, during Family Home Evening and Family Council, Dean and Ness and I went through the "good days" and "bad days" of last week. I love when there are more good on the list than bad. Of course, we always do the good first and count our blessings to recognize that we have much to be thankful for; seemingly small things, like being able to sing in a choir and taking it easy on a rare day off and feeling the Spirit during a church meeting. I was reminded that sometimes good and bad can happen together, like getting bad news but being able to smile in the next moment. That happened last week with Dr. Grossmann.

He walked into the exam room and saw that I was trying to keep warm under my jacket and said, "You were cold during the scan, too, weren't you?" My first reaction was, wow, was it that obvious? Did the techs tell on me? I asked him how he knew that I was cold. He started to explain that we all have "brown fat" - necessary fat (how cool is that?) - that helps keep our bodies warm. When we're cold, the brown fat works harder to generate heat. Dr. G pulled up my scan and showed me the area around my shoulders. On both sides of my collarbone and up into my shoulders were two "ghost-ish" swoops, like Nike logos. They weren't yellow, like in my (hot) brain and heart, but they were white-ish. Dr. G explained that those were evidence of my brown fat trying to warm up the upper half of my body. Amazing! I'm always cold in those scan rooms, so it did make me curious that we haven't seen that before, but maybe seeing me shivering that day in the exam room reminded Dr. G to tell me about it. I liked that. It kind of softened the blow of the hot spot for a minute.

It also makes me happy that Dr. Grossmann always asks about my singing, that he remembers I'm in the Symphony Chorus. Lindsey is always good to remember personal things about him, too, like when he told us about his Christmas lamb dinner and that he was going to be on vacation this week. He was excited to take his parents skiing at Park City during his time off. It also seemed to us that on this visit, as he outlined what would happen to me IF this is really a tumor and IF this is another form of cancer - that my care would be transferred to another specialist - since he is a specialist for "melanoma in the head and neck." We knew he was a melanoma specialist, but I'm not sure we've ever heard him specify the head and neck. How blessed am I to have the best of the best! I count my blessings every day. And I know he'll keep me on his radar, even IF...

Lao Tzu said, "Being deeply loved by someone gives you strength, while loving someone deeply gives you courage."
Amen.

(Picture was taken by grandson, Lachlan, during Christmas visit 2011)

Future Date

Friday, February 10, 2012: Last night, Dean and I went to dinner at a new-to-us place right here in our little town. It's called Smedley's and it's in an old red-brick house on the corner of Main Street and 300 North that was built in 1893. Such charm! The dining areas are in the parlor and dining room and bedrooms of this wonderful old house. They specialize in BBQ straight out of the original smokehouse. Dean had ribs, I had a stuffed burger, and we both had the green salad that was like a smorgasbord of garden veggies. I liked it. It was a good change for our anniversary. And anyone who knows us well knows that we don't often journey far from our favorites. So, this was a treat, which was just what I needed after the past few days of doctor and hospital visits.

I got the call from Dr. Adler's scheduling assistant for the endoscopy/biopsy appointment this morning. I started to tell her that I could do any day EXCEPT next Wednesday, which is packed with activities already, but before I could say a word, she said, "Now, the appointment will have to be on a Wednesday." Of course it does, why not? I could hear her punching her keyboard, and then she announced, "Okay, I can get you in on March 7."

After getting it all arranged, I hung up and had to sit back for a minute. March 7 is the day I was first diagnosed with melanoma one year ago. Coincidence? No. Irony? Yes. Our lives are a series of patterns, whether it's celebrating wedding vows or the day we received dreadful news. I hope that someday at some future date March 7 will be just another spring day and it will pass by like all the rest. I guess I could commemorate it this year as the first year of me surviving the big C and that every March 7 from now on will continue to be a celebration. Just wish I didn't have to be reminded of it by undergoing another procedure where I have to be knocked out and poked with needles...

(Picture: Road trip to the Bonneville Salt Flats on the 4th of July 2011. I think I'm even wearing earrings again after having my pierced ears swell up and close off during radiation.)

Love Song

Thursday, February 9, 2012: This post will be long-ish, I'm afraid, because I want to share some fun pictures and give an update. First, and most important, today Dean and I celebrate 33 years of marriage! How can it be? February 9, 1979, was a beautiful, sunny-but-cold winter day and I was ecstatically happy to be marrying my best friend in the temple. Every one of those 33 years was challenging, but joyful, too. I am not the person I was 33 years ago, and in many ways, that's a good thing. Through it all, he has loved me through the very best and the very worst of life. It's been like the blink of an eye and I look forward to our forever.

We are definitely 33 years older. Today's celebrations will be a nice dinner out (I think we're going for ribs) and maybe a movie - if I can keep Dean awake (his early morning work schedule is a beast). I actually forgot it was our anniversary a few times this week and made other plans for tonight that had to be canceled. That's what happens 33 years later - if it's not written in bright red marker with a big fat heart on the calendar, it's just another day. Happy Anniversary, honey, and thanks for the sweet kiss this morning.

"In other news", after spending three hours at Huntsman on Tuesday and another (almost) three hours there yesterday (yes, Lindsey and I were there at 3:50 for blood work, were taken into the exam room at 4:10, and didn't see Dr. Grossmann until almost 5:40! We didn't leave the building until about 6:20), the results of the scan are in...and it's not the good news we were hoping for.

The "hot spot" near or on or around the duodenum is still there and has grown a little, which may indicate a tumor. Dr. G used the words "may" and "may not" a lot during our conversation, which also indicates that they just don't know. It's still a mystery. It may or may not be a tumor, it may or may not be an inflammation or infection, it may or may not mean I have some other form of cancer now. He spent some of that time that Linds and I were waiting in the exam room (and not comfortably, as we were both freezing and had nervous stomachs) talking to Dr. Adler, the endoscopy doctor, as they both looked at the newest scan. Dr. Adler feels sure that he would be able to see this thing better with ultrasound and will go in for a third endoscopy with a "fatter" tube with some sort of little scissors on the end that he can snip off some tissue for a biopsy. Whatever it turns out to be, Dr. G thinks I will need to have it surgically removed, as it obviously should not be there. I saw the scan, and sure enough, there is my bright yellow active brain, my bright yellow hard-working heart, and this little ball of yellow right by my stomach. So very interesting and strange and scary.

The appointment for the endoscopy/biopsy will be within the next two weeks; Dr. Adler is setting that up. My next appointment with Dr. Grossmann will be for a CT scan in June, since (as he said), "You're going to be busy with this other thing for a while." The happy news, the silver lining in all of this, is that there are no other spots anywhere - no melanoma - and that is good news. If I just didn't have to worry about this other little spot...

I've done some crying and despairing, but hope remains. As Mom said when I told her, "All those people who prayed and supported you through the past year will still be there, and there are still more Miracles & Hope to be." I know. I really do know.

Enjoy the pictures of then and now...(Senior Prom 1975, wedding shower 1979, reception 1979, and RMF work party 2008?) Someday I hope to learn how to post pictures & words the RIGHT way...geesh...

Always Learning

Tuesday, February 7, 2012: I learned some new things today as I made it through my THIRD (is it the third or is it the fourth?? - I've honestly lost count) PET scan in the past 11 months. PET scans are the biggies - full body scans that give 3D results - big results and big bucks. And then when I think of all the radiation my poor body has had to endure, it's a wonder I don't GLOW - and not in the good way!

I learned that my hubby actually enjoyed taking me to my scan today. Granted, he got to take a little bit of time off work (I didn't make him stay and sit for THREE hours in the waiting room, so he was only gone from work for the time it took to drive me to Huntsman and pick me up again when I was done), but I think it was more than that. I think he felt "included" in this crazy journey. Not that he wants to make a habit of it - he's very glad that Lindsey will be taking me to my appointment with Dr. Grossmann tomorrow for the scan results. I think that would be a little scary for him.

I also learned that the reason this scan requires that you sit in a quiet, darkened room in a (semi) comfy chair with a foot rest under a hospital-heated blanket and do NOTHING (I took a book along today, thinking I'd get to delve a little deeper into my new library find, "Magdalene", but nooo...) is because the two hours you sit there (yes, I said TWO HOURS) allows the radioactive contrast to move through your entire body equally. The technician explained to me (and he's the first one to really do a good job at it!) that if they were to allow the patient to read, the contrast would naturally go to the hardest working muscle in the body at the moment - the brain! If they were to allow the patient to talk and laugh and move around the room, the contrast would go to the muscles actually doing the work and the little "lazy" muscles - where cancer loves to hide - would not capture any contrast. Brilliant explanation! That's why I have to sit alone and be quiet and even try to nap (and turn off my thinking brain, too) while this stuff goes swooshing through my insides, waiting for the big camera to take its pictures.

I also RE-learned today that prayers are answered, no matter what you pray for. Today I prayed with all my energy that I wouldn't get a throat tickle and have to cough in the middle of the scan. (My new high blood pressure meds give me a dry cough and it does seem to come on at the worst possible times.) In the past couple of days, I've had coughing attacks that leave me weepy (eyes water) and gravelly (can't clear my throat) and downright exhausted. I just knew that if this happened during the scan, it would have to be postponed or restarted or something bad...and I would hate that. So, beginning last Sunday, I've been praying that God would relax my throat, relax my breathing, relax my coughing muscles enough to make it through the 45 minutes I would be on the scanning table. I've even laid in bed the past few nights, unable to sleep for worrying about this silly cough. Today, before we left for the hospital, I drank lots of water (had to fast from solid food after 6 AM) and I even told one of the nurses that I was very worried about this. Her reply was, "Yes, that would NOT be good!" I started feeling pretty confident until I had been sitting in the dark, quiet room for about 45 minutes...and suddenly, I felt the obnoxious throat tickle. I started to cough. My prayers intensified. Please, God, just let me get through the scan without coughing, please, please, please. The cough stopped. I was able to relax and almost fell asleep. When I laid down on the scanning table, I felt very comfortable. I started singing in my head. Not once did I feel the urge to cough, not once. In fact, I felt like the scan went faster than others I've had in the past. The IV injection of more contrast didn't "burn" my neck wounds like it did before and I didn't feel at all restless. I know it was a powerful blessing. I was so relieved and so grateful. He knows all.

So, now we wait again for the results. At least we're only waiting a day and not a week or longer. My appointment with Dr. Grossmann is tomorrow at 4 PM. I'm praying mightily for "good news".

(Pictures top and bottom: June 2011 - riding in Dean's Jeep project with Lachlan & Ness. I am kind of paranoid about being out in full sun without my hat now! And my sweet nieces, Britnee & EmiLee (holding the sign at the bottom) raised money in a dirty mud race in July 2011 to help the Cancer Society - me in my hat with all the lovely/muddy "prom queens"!)

UPDATE!

Huntsman Cancer Center called this afternoon. The scan scheduling person said, "Your insurance has decided to approve your scan. Can you come Tuesday about noon?" Thanks be to God. I think I'll sleep a little better tonight...

Denied

Thursday, February 2, 2012: I finally called the Huntsman Cancer Center yesterday to ask about the PET scan that Dr. Grossmann wanted me to have, "just to be sure" the initial hot spots seen six weeks ago are really nothing. Dr. G's office transferred me over to the scan scheduling desk, where I was told that my insurance had denied the request. Really?? I'll admit that I am confused and bummed and angry and feeling like the spoilt child that was pampered for almost a year and then suddenly tossed aside by the new "powers that be." In the 11 months since my diagnosis, with our previous insurance company, I was never denied a procedure or had problems with insurance payments. I don't know the new insurance's reasoning (I should have asked), but was told that Dr. G should have called me to talk about "alternatives." I'm still waiting for that call. One month with the new insurance company, and already, I'm frustrated and discouraged. The "roll-over" policy that Dean's employer promised with this switch is a farce; besides this "denial", I've also learned that none of my team of doctors is on their "preferred program", except for Dr. Grossmann. Yeah, I'm miffed, to say the least.

So, this morning, I decided to feel a little sorry for myself. I didn't do my exercise walk, I stopped for a breakfast burrito on my way home from taking Ness to school, and I'm still not dressed (at 10:20). I'd like to go curl up in my bed for a few hours. It's silly, I know, but I feel the insurance company rejected ME and not just the procedure. Surely they realize that we're not playing games here. Surely they know the consequences if "hot spots" are left unchecked. Surely...

If I can rise above all of this, it will be because of priceless blessings in my life, like the darling voice on the other end of the phone this morning, saying, "Grammy, it's a good day today. Do you know why? It's Groundhog Day and he saw his shadow!" I love you, Lachlan. You make my heart sing.


(Pictures right to left): Our little family, taken in January 2002, 10 years ago. Why did I insist we all wear white? Look what 10 years has done for all of us... and my favorite picture of Lachlan & Grammy, taken in 2008)