Painted and Ready

Monday, April 30, 2012:  We have a plan!  I called the hospital this afternoon and found out I am FIRST on the list for surgery in the morning.  That means I am to be at Huntsman Cancer Center at 7:00 AM, ready to go.  I am definitely ready.  Been ready for a long, long time.  Now that we're in countdown mode, I feel all mixed up inside, but not in a negative way.  Just want this to happen, be taken care of, and be done.  I am not jittery (yet), but feeling calm that all will be well and good.  I know it is through the power of prayer and I am grateful.

I've got most of my To Do list done.  Tonight, my family and I (and sweet friend, Jana, photographer) are going to do some family pictures.  Why not add one more thing to the mix, right?  It will still be daylight with a little cloud cover, so I think it will be perfect.  I know it will be.  We'll make it so.  Other than that, there is a load of laundry to fold and put away and a little hospital bag to pack.  I'd say I'm ready.  More than ready.  Painted and ready! (God bless my angels for the pedicure gift certificate)

Talk to you soon, my friends...

Things that Count

Saturday, April 28, 2012:  Today is my beautiful daughter, Chelsea Diana's, birthday.  Her 30th birthday, I might add.  I think she only gets better with age.  She is very precious to me and I'm grateful that she and her little family are here with us for the next week.  I already feel calmer and more at peace with life and all the question marks of the coming days.  My family is my rock, my treasures, the things that count in my life.  I'm feeling immensely blessed.
Slowly, slowly, my Before Surgery To Do list is being whittled away.  This morning, Dean and his wonderful crew (Aaron and Lindsey and Robby and neighbor/friend, Dave Hale) laid the new sod in our backyard.  Instant green!  Instant happiness!  I love it.  I can see myself sitting out on the lush green lawn in a few weeks with my ice water and a good book.  Pure joy.
The clutter in our home is slowly being whittled away, as well, in anticipation of the community garage sale next Saturday.  While some were hard at work in the backyard this morning, Chelsea and Janessa were going through J's drawers and closet (and under her bed--yikes!) to weed out all the unwanted and unworn that could very possibly be someone else's treasure.  There is a new pile of boxes and bags on top of my own boxes and bags that will hopefully go to new homes to be enjoyed as we have enjoyed them.  What a relief to be taking out inside of bringing in!  Cross that off the list, too.  As we come to the end of April, I'm feeling that renewal of Spring, clearing out the cold of winter and basking in what looks new to our eyes.  It's a good day.

(Picture:  our little family in July of 1982 - Aaron was 2 years old and Chelsea was 2 months old)

Good Signs

Thursday, April 26, 2012:  Today, I feel like Heaven is showing its mighty power.  I love my blog friend, Alisa's, thought that God has the ability to save and cure, whether it happens or not in our own lives.  He has the power.  He can do it.  And it doesn't matter who we are--the best of the best or the worst of the worst, beastly cancer cannot win if it's not in the plan.  He sees us all the same, as His children.  He knows the number of our days.  I trust Him to bless me, every day, and to be there when I need Him most.

Today I was on the other end of the doctor's exam--the supporter, the watcher, the hand to hold.  I went with Dean to see Dr. Robison, our wonderful dermatologist, to have a mole & skin check.  It was kind of nice to sit in a normal chair and not THE CHAIR.  It was nice to not have to disrobe.  But, at the same time, I felt that tickle in my tummy for my sweetheart.  It's scary, the not knowing.  With all the gazillion moles and freckles Dean has, there was only ONE that was of any concern, a little tiny thing on his belly.  Within minutes, Dr. Robison's nurse had the spot numbed.  Within seconds--literally seconds--Dr. Robison had cut it away and stuck a tiny round bandage on it.  I was amazed!  Five seconds!  Of course, now it will go to the lab to be evaluated, but we feel so encouraged.  All the ones we were sure were skin cancer or melanoma are fine, normal, of no concern at all.  We walked out of the office, thinking "that was a good sign!"  It was simple, non-complicated.  Maybe on surgery day...?

Tonight, walking out of a church meeting, I learned that one of my neighbors who was scheduled for an outpatient surgery today didn't have to have it after all; that she had gone to the doctor Monday, where they found that her body had healed itself!  Her mother had come from out of town to be with her for her surgery, and now they were planning to play for the weekend!  I love it.  Tender mercies and another good sign.

I'm not saying that Dr. Scaife will start opening me up Tuesday and find that I've been cured or that it will take minutes instead of hours, but I do believe in miracles.  Always have, always will.  And I'll always celebrate them in other's lives, as well as my own.  They are good signs from above.
(Picture:  Dean and I, ready for Senior Prom, 1975--I was 16, he was 20)

Wait, Worry & Wonder

Wednesday, April 25, 2012:  I am now down to six days and counting until the Big S.  It is torture to wait.  All I do is worry and wonder.  I have really had to shake myself to stop the morbid thoughts, too...the "what ifs".  I constantly pray for peace, for the shorter surgery, the quickest recovery, the strongest heart, the least amount of complications.  It has not helped matters that I've been cleaning out my closets and storage bins to prepare for the community garage sale--I feel a lot of closure as I sift through my "stuff", saying goodbye in a way.  When I get frustrated and discouraged and depressed, I think of President Uchtdorf's latest advice--"Just STOP IT!"  I WILL SURVIVE!  I will come back stronger and healthier and more resolved to live better.  This week, I gave up sweets (again) and started reading & drinking the "Green Smoothies" diet.  I definitely feel more in control without my chocolate and sugar high and I actually like my Green Smoothies.  I take 1 1/2 cups water, add a few slices of lemon (rinds & all--I read that it helps fight skin cancer), a few teaspoons of ground flaxseed, a few teaspoons of coconut milk, and about three handfuls of baby spinach and blend that all up really well.  Then, I blend in a cup of frozen mixed berries and half of a frozen banana.  I get about an 8-9-oz. serving.  I should be drinking two of these a day, but I'm starting out with one.  I'm hoping to lose the few pounds I gained over Easter, clean out my system, and get some good nutrients in there before the Big S.  I've also continued to do my 45-minute walk along Legacy Trail.  I'm hoping that helps to strengthen my heart for the procedure.  Of course, it's all baby steps a little late, but it feels good and that's what counts, right?

I went to the temple last Saturday and felt the "immediate goodness" of God.  For that hour, my anxieties were calmed.  My fears turned to trust.  He knows the Big Picture.  He knows my heart and my worries.  He knows about melanoma and how to fight it, and He teaches me daily how to be strong.  This Sunday, April 29, I'm going to fast through two meals.  I don't usually make an announcement that I'm fasting, but as Dean and Janessa talked about it in our weekly Family Council the other night, they decided that they wanted to join in.  Maybe others will, too.  I don't need to know and you don't have to tell me.  But if you do and you want to pray for me, specifically, these are my heart's desires (besides the ones I already listed at the beginning of the post):  calm and courage, slow-growing tumors, NED (no evidence of disease after the surgery), manageable pain, the shortest time in the hospital possible; and that Janessa will be comforted & taken care of with love.  No one knows her like I do, except God himself.  She needs me, and I need her.  I've got to live to see her raised and happy with her own little family.  This is my prayer, today and always.

(Picture:  Waiting for Janessa to be born--my water broke six & a half weeks before her due date, so we waited in the hospital for 10 days for her little lungs to develop before she could be born.  Waiting and worrying and wondering...again...)

Anxious (an understatement)

Friday, April 20, 2012:  It's been a week since my last post.  Honestly, I've thought about posting every day and have even had it on my "to do" list all week.  It's been a stressful week for me because I've had to do things I hate, like deal with finances and paperwork and documents and decisions and the big bad Unknown.  Still trying to refinance our mortgage.  Enough said.  Not enough money in our bank account.  More than enough said.  Pre-op appointment.  I'll just say blood work and EKG that may or may not have been accurate, and that's all I want to say.  Scary stuff.  The surgery is looming closer and I am anxious.  Those voices in my head keep whispering, "what ifs", and I don't like it to think about that.  Every new twinge makes me wonder how much this beast has grown in all the waiting.  I even worry that my few extra pounds this week are due to all the Easter candy I've consumed or a tumor the size of a softball.  Talking to the nurse about my surgery concerns only reminded me that I've been down this road two times too many in the past 13 months.  I think about coming out of anesthesia and looking at the clock to see if I've been out three hours or eight.  I worry about my family, sitting in uncomfortable waiting room chairs, only to get the bad news that they'll be there many more hours.  No wonder my tummy is tied up in knots and the tears are close, whether I'm dealing with loan requirements or disability requirements or ten new bills in the mail or one more person asking how I'm doing.  To top off this stress, I freeze and burn at night.  I go to bed cold, with socks on my feet and long-sleeved/legged jammies, only to wake up too hot.  I throw the covers off and imagine the trapped heat from my body floating to the ceiling in giant waves.  Five minutes later, I'm cold again and back come the blankets.  I should be grateful I don't wake up drenched in sweat, like some my age.  But, dang it, did menopause really have to decide to give me grief NOW?

In spite of all this anxiety, I am blessed.  I read this scripture yesterday and it was a ray of sunshine.  "Search diligently, pray always, and be believing, and all things shall work together for your good."  ALL THINGS, working together.  He doesn't just say SOME things or a FEW things - He says ALL.  All the silly things I'm worried about will work together for my good.  I'm surrounded by people who are praying and believing and doing things to help me - you know who you are and I love you.  He is there, too.  He has given me a little rain, a little sunshine, a little flower, a little ballgame distraction last night, a little patch of green grass for my backyard in the coming week, and a whole bunch of hope.  I cling to that.  It will help me fly over this bump in the road.
(Picture:  Dad and Mom and me one lovely Sunday afternoon...)

Friday...at last

Friday, April 13, 2012: Today, I'm thinking about my sweet father-in-law, Calvin. This would have been his 92nd birthday. Happy Birthday, Dad! You are a treasure.

This has been a killer week. Now that it's Friday, I look back and think, well, why was this week any harder than another? I have to believe that part of it was having the alarm wake me up every morning at 5:50 AM after a glorious "sleeping in" and waking up on my own at 8:00 time during Spring Break last week. I am just plain TIRED. Another reason is that I've had a few projects that have kept me hopping all week. And looking around my house, it certainly did not involve cleaning! What do I do all day? The list grows ever longer, especially when I've started making a list, called "Things to do before Surgery"...

I'm sad, too, that I haven't been able to work as many hours as I'd like to do. We need the money, and it's frustrating to see transcribing that needs to be done and dollars that could be adding up, and yet, I don't have the time or energy to do it. Tonight I was able to do my best work all week. After five days of puttering, I was finally able to sit down and crank out the calls. Now, I'm wondering if I should do some tomorrow. Ugh. If only a rich fairy godmother would shake her wand in my direction...

Part of the "to do's" on my lists this week involved looking things up on the Internet: we want sod for the backyard, Dean wanted to get registered to vote, Janessa wants to take a required computer class online this summer, we're booking a room in Las Vegas for the Scentsy convention in July, we want to go to Sea World in June, I'd like to trade my couch & love seat in the office for a day bed, I've signed up to join the community garage sale in May, we wanted to refinance our mortgage, I needed landscaping ideas, I opened some new online Bill Pay accounts, I looked at a few classified ads for PUPPIES, I checked what foods I should be eating to kill cancer and what foods I should not eat to keep my blood in a good range of thick versus thin... and added to all that, I like to keep a watch on some of my favorite blogs: Alisa with Stage IV melanoma who is undergoing IL-2 treatments, NieNie with her brand-new baby girl and her new book on sale, Cindy and her changing world from rock to forest, Crystal and her sweet boy's struggles against leukemia, etc. etc. etc. My brain is absolutely mobbed by information. I remember that in my meeting with Dr. Scaife, she said, "People know as much as doctors these days because they can look up everything on the Internet." It's true. And I think I would rather be ignorant about a lot of the medical stuff. Sometimes I think I would rather not know that Alisa found a new lump near her spine. I think I would rather not know that one cancer patient refused radiation & surgery and lived, while his brother-in-law went through chemo & surgery & radiation and grew so weak that he died. I think I would rather not know that Dean has a "sunspot" on his chest that needs to be checked by the dermatologist. I think I would rather not know that hearts can stop during surgery. I think I would rather not know that the pancreas does not like to be touched and will rebel if it is. I even think I would rather not know that avocados and broccoli and asparagus (all of which I've eaten in the past week) are NOT good for someone who is on blood thinners.

Still, it is kind of nice to know where we can buy sod for a good price and how long it will take to drive to Sea World. It's nice to know that we can refinance our home online now (even though it's still nerve-wracking!) and that I can buy some of my new favorite tunes to download on my phone for my morning walks on the Legacy Trail. That's what I've been doing this week, downloading STUFF into my brain and convincing myself that it's all for the better good, when really I should just take a few more calls, drink a cancer-fighting smoothie, and have an afternoon nap.

Happy Friday...

(Picture: Calvin and Janice, Dean's mom & dad in about 1945-46, probably about the time they became engaged. How sweet is that?)

Good News Day...again

Monday, April 9, 2012: Big shout-out to my wonderful son, who celebrates another birthday today. Dean and I were talking last night before falling asleep that it seems like yesterday Aaron arrived and changed our lives. He was such a good, calm baby and a happy, smart little boy...and now he's a loving, hard-working, creative, GOOD man. I'm so proud of him. I love you, Aar. You made me a mommy first, and that's the best blessing I've ever had.

The big GOOD NEWS is Aaron's birthday. But, I also just heard from Joanna at Dr. Scaife's office and she has set a surgery date for me. It's Tuesday, May 1. I wish-wish-wish it was sooner, but I'm just happy to have it written down and set at last. I'm nervous about these little cancer-beasties growing and causing havoc, so every day I pray mightily that my body will continue to kill and fight and protect. She said she will talk to Dr. Scaife and see what pre-op things I need to have done (more blood work, possible EKG and/or chest x-rays, etc.) and then, she'll call me sometime this week to set that up. You know how I love a plan!

Easter weekend was warm, sunny, and hope-filled. We spent time Saturday with our darling "B" grand-girls, coloring eggs and having an egg hunt, and I loved every second of it. Sunday was a spiritual feast, testifying of our Savior's atonement and resurrection - He is the Hope and the Light of the World! Had a dinner/feast and ate too much, but truly enjoyed being with and talking to my family and having my cup overflow with love. I am a lucky girl.

(Picture: Aaron with his "Cookie Monster" cake - age 3)

And the Computer's Choice is...

Friday, April 6, 2012: Today, I received the news we've been waiting for all week. Jennifer from the Clinical Trial Department called (while I was sitting in the movie theater watching "Titanic" in 3D) and left me a message that I had qualified for the MORD Study, but I had been randomly selected to participate in the "Best Medical Practices" arm, which was the only one of the three arms that I did NOT want to do (it involved treatments first, perhaps surgery later). I called Jennifer when I got home and talked to her about this turn of events and that I was disappointed that I hadn't been chosen for one of the "surgery first" arms. She agreed, saying that she, too, wanted me to be able to have surgery first, since these tumors look to be completely "resectable", meaning that Dr. Scaife is certain she can remove them in their entirety and leave me NED - No Evidence of Disease. She asked me if I wanted to take the weekend to think things over and I told her that I'd been thinking about this for over a week now; I was ready to make decisions. "How do I move this forward if I definitely want to do surgery first?" I asked her. She replied, "You simply tell me that you want to withdraw from the study, and then you make an appointment with the surgeon." It was that easy. She said she would let Dr. Grossmann and team know of my decision and that they would be contacting me for a follow-up after my surgery. I called Dr. Scaife's nurse, Joanna, and left her a message that I was ready to schedule my surgery and if she could please arrange it, as soon as possible. Since it is Friday and I called about 4:00 PM, I'm hoping to hear back from her on Monday. At that point, the surgery date will be arranged, and we're all hoping it will be around the last week of April, if not sooner. I'm glad we know the outcome of the "computer's choice" and that I was given the option of accepting or declining participation in the trial. I feel at peace with this decision and was very encouraged by Jennifer's response, "I would do the same thing if I were you."

I feel the power of prayer. Even though the randomization was not what I had hoped, I feel that God has led me to this point and will continue to lead me along. I continue to pray for the simpler surgery, the shorter hospital stay, the quicker recovery. And if all the bad bugs would just disappear, I'd be one happy chicklet.

Happy Easter...

(Picture: Passey kids at Easter in 1978)

Canceled

Tuesday, April 3, 2012: By the title of this post, many are going to think something big is up, but it's not really. No, everything is still on - still waiting to hear about the surgery and the trial and all the big things coming up in my life. But, today I did something I didn't ever think I'd actually want to do - I canceled a follow-up appointment with the doctor who has been with me from the very beginning of this journey, my wonderful Dr. Josh Bradley. There was a time, about six months ago, that I was petrified I'd come to the end of my association with Dr. Bradley. He literally saved my life with the initial biopsy and diagnosis and neck resection, and he's been my hero ever since. So, I think he's extended our follow-ups and check-up visits longer than he really needed to, just to give me the reassurance I've needed all these months. A few months ago, I got a simple earache ,and being the Super-Hero Ear/Nose/Throat doctor that he is, he treated me, cleaned all the junk out of my dry, flaky, radiation-burned ear canal and has continued to "follow-up" every six to eight weeks or so, just to make sure all is well. I knew I had another appointment with him coming up next Monday morning, and in light of all the other appointments I've had - and WILL have in the next few weeks - I've had a nagging feeling that I should save a few "co-pay" bucks and cancel the appointment. I've waffled back and forth for a few days, saying, "No, I should go and tell him the latest developments," or "Yes, I should cancel since I'm really fine from the neck up!", back to "No, I want to keep seeing him..." Finally, today, the "no's" won. I called and canceled. Part of me feels that this is the end of the initial phase of my diagnosis, the sort of "innocent" phase, when I needed Dr. Bradley to lead me by the hand and be there for every next move. That's why this is so hard. It means I really have to "grow up" and be a big girl. I have to come to grips with the fact that there isn't much else left in the neck to cut out and I'll probably always have the dry, itchy ear canal on the right side. It means I have to move on to the "bigger guns" - the more serious oncology docs, the more scary procedures, the tougher statistics, the higher chances of relapse, the cursed scans that are much too sensitive and unforgiving. I've moved from Primary Care to Specialist, and that has its own pros and cons. I feel like I've lost part of my team, one of my arsenal of caregivers, who has cared and given so much to me this past year. I hope I did the right thing. I'm not so sure tonight...

(Picture: Lisa, Aaron, Ally, Lindsey, Avery, Janessa, and Dean at the Passey reunion at Bear Lake, 2008)

Fortune Cookies

Monday, April 2, 2012: I had a wonderful, relaxing, spiritual, cup-filled-to-overflowing weekend. The wind blew hard most of the time, so I stayed hunkered down in my comfy house to watch conference and be guided and motivated and lifted and strengthened by the Spirit. I feel TONS better today than I did last Friday night, when I crawled into bed exhausted from the visit with Dr. Scaife and all the decisions made. I'm at peace with my life and eager to get onto the next phase, whatever that may be.

I did have to go back to Huntsman today to get more blood work done. (Long story short, the trial study clinic where my blood was being shipped for the evaluation process was closed Friday & Monday to deliveries, so had to overnight NEW blood to arrive there in the morning.) My favorite phlebotomist, Kirk, was there to do his magic. He wrapped a warm hospital blanket around my left arm for about five minutes and then went in for one stick that filled up about five little vials with my good blood. Bless him! Jennifer, my trial counselor, was there to make sure he got all the paperwork, and as I finished, she gave me some good news. She said that even without these blood samples, the trial clinic let her know that "things look good" for me to be accepted into the study. Then, she said that she would probably be calling me in the next couple of days with the results of the randomization. I was pleasantly surprised that things were moving more quickly than we thought they might. Keep it up, guys! I'm anxious to get some solid dates scheduled.

We're on Spring Break this week, so J came to the Cancer Center with me. It's the first time she's been there, so it was good for her to visualize where I spend all my time lately. The blood draw was so quick this time, she barely had time to get her approval for the hospital's WiFi on her iPod. As we were leaving the parking lot, she told me once again that she actually likes being in hospitals - that she feels safe there and loves how quiet and peaceful things seem. People are busy, but they're busy doing GOOD. She said she also likes feeling somewhat unique because most of her friends have no idea what goes on in hospitals. I'm glad she feels it's a positive that she knows what she does at her age. It makes me a little sad, but she's okay with it.

Tonight, I finished my application for Social Security Disability benefits. If they only looked at my medical records and history of surgeries & treatments & doctor visits & tests, I'd probably have a good chance of being accepted. But, if they interview my family and friends about whether or not I have the ability and energy to work, I'm afraid it would be declined. Right now, at this moment, I feel great and I do have the energy to work. But, I worry for the future, when I'm spending days and weeks in the hospital recovering from operations or going through treatments, as the bills continue to add up. We'll see what happens. I guess "Stage IV Metastatic Melanoma" is on the list of conditions for which one can apply for Disability benefits, so that's why I'm giving it a go. I worry about not working, so it would be such a blessing if I didn't have to worry about it so much.

We had Chinese food that other night for dinner (when it's J's choice, that's what we can expect). My fortune cookie said, "You will enjoy good health and financial independence." Hallelujah! Let it be...

(Picture: Grammy and Olive, March 2012)