July 12, 2018
At last...an update to end all updates, literally. In the past two-plus years, I've steadily gotten stronger and more "back to normal" than ever before. Happily, after the success of that 2nd round of IPI, I was able to graduate to having scans every six months instead of three. The nerves and doubts always overshadowed a complete sense of well-being, but over the years I've come to know my body, inside and out. No new bumps--though a small lump under the left side of my jaw was diagnosed as scar tissue and NOT cancer--and no other unusual pains or symptoms. I still struggle with my digestion and finally resigned myself to the fact that I just cannot eat some of the foods I used to. Giving up sugar has been my hardest challenge, but I feel so much better when I eat healthier. Don't we all?!! I still take my Creon pills at meals, and probably will for the rest of my life. They save me much discomfort and suffering after eating.
Last December, at my semi-annual scan report, Carolyn hinted that if everything looked good in 2018, I could be officially DONE. No more scans!! It was too wonderful to believe. Dr. Grossmann was moving on to a new position in Florida (doing more research, which is where his heart was), so it seemed the right time. He had been such a wonderful doctor--I couldn't have asked for better. As Lindsey and I left the appointment with Carolyn, he came walking down the hall to tell us goodbye. He even hugged me! I was so proud of him for his promotion, but he had saved my life...and it's hard to let go of someone like that. Also, the office staff that Linds and I loved so much--Patti, Pam, and the others--were being shuffled around to other clinics and we missed these ladies who knew us so personally and laughed & cried at our joys and sorrows. When the appointment was set for July 11, it seemed so long to wait--and who knew what could happen in seven months. But as is always the case, time flew by and here it was, the day of reckoning!
After waiting nearly an hour to see Carolyn or the new doctor, Dr. Voorhies, we were finally called back. Lindsey reminded me that over the years, we tried to ask for the earliest appointment of the day since it would be less busy. Ah, the things we have learned in the past 7 years!! As I sat in the hallway to be weighed and my vital signs taken (just FYI: weight 165.9--at the start of this journey, I weighed about 245; today's blood pressure 142/60, which was higher than usual because I was so stressed over our hour wait!--but at my first biopsy in 2011, my blood pressure was so high, Dr. Bradley almost didn't do the procedure), Carolyn came around the corner to wait by Lindsey. The nurse said, "You must be favorites for her to come wait for you to come into the exam room!" Not one to dance around the news, Carolyn took us into the room, closed the door, and said, "Well, your scans look great!" We all clapped and laughed and screamed hooray! I'm pretty sure all the people in the waiting room could hear us.
I had come with high hopes...and my new tee shirt. I knew the scans would be okay. Carolyn immediately asked me to put it on, so I did...and here we are! She said she wished the back of the shirt said, "It can happen!" She also took a picture of my tee to send Dr. Grossmann because she knew he would be grateful for the news.
As we talked about my new life without scans and cancer worries, Carolyn said that she hoped I would stop in when I was in the area. She also mentioned that she has put me high on her list of "good responders to IPI". She wondered if I would ever be willing to come to symposiums to talk to patients about my experiences. She also asked Lindsey if she'd be willing to share her experience as a caregiver. We both said yes, and I really hope to do that someday. I love Carolyn and I'm so grateful for her years of friendship, compassion, and knowledge. She said that although I was now finished with scheduled care from Huntsman, they would always be my cancer team. As someone with a history of melanoma, if I ever have questions or concerns, she wants me to call her for help. It means the world to me to realize I never have to travel this path alone, whether I'm in remission or not.
Back out in the waiting room, I gave a high-five to Pam and to Patti. They too were thrilled. As we turned to leave, there was a sweet old man standing behind me with a huge grin on his face. "Congratulations on your great news!" he said. "I hope to be there myself someday!" I took his hand and told him that it CAN happen! If it happened with me, it can happen with anyone.
My last trip to Huntsman--as a patient--will be this coming Monday at 2:00 pm, where I will have my wonderful, trustworthy, life-saving port removed for good. It should be a fairly simple procedure, even though it may take longer than usual because it's been in so long and they might have to "cut around some scar tissue", according to Carolyn. Eek! But I can do it, right?
I've done much harder stuff...and SURVIVED.
TAKE THAT, MY CANCER GOLIATH!! YOU LOSE...and I've WON.
Sunday, May 1, 2016
Sunday, May 1, and I'm preparing for the day by listening to sweet, uplifting music that soothes my soul and gives me hope for the week ahead. A favorite song comes on that speaks directly to me and touches me, no matter how many times I hear it. It's called, "Blessings", sung by Laura Story.
"We pray for blessings, we pray for peace,
Comfort for family, protection while we sleep,
We pray for healing, for prosperity,
We pray for Your mighty hand to ease our suffering,
All the while, You hear each spoken word,
Yet love us way too much to give us lesser things
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are mercies in disguise
...When friends betray us, when darkness seems to win,
We know the pain reminds the heart
That this is not our home
It is not our home
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
And what if the trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise."
I feel very blessed. But at times, I feel very vulnerable to the sorrow and anxiety and pain. I am grateful to know I am never alone and God does hear my prayers. This disease...this world...this earthly life...they have all contributed to countless mercies in disguise. And for that, I am thankful for all the trials I never wanted, but in some way needed in order to grow and prove faithful.
Tuesday, April 5, 2016
It was a long gray winter, full of highs and lows; and while I have spent many sleepless nights composing this post in my mind, somehow I could not bring myself to actually write it down. I've complained, aloud and silently, and I haven't been very kind, especially to those I love the most. I don't want to dwell too much on those feelings because they continue to weigh me down, even though I know where they come from. Now, as winter becomes spring and the sun brings warmth and light, I'm trying to shake off that dark spirit. It begins and ends with hope and faith and reminding myself to be thankful for the big & little things God puts in my life every day.
My latest scan (Dec 2015) was clear of any new or existing tumors. No evidence of disease! This is huge. I am now considered a "success" story. It still seems unreal. For the most part, I feel great. I have energy and strength, especially in my little school job. I still need a little nap time once in awhile and I suffer with Whipple-related pain more than usual, but otherwise my health is okay. It's a relief. Next scans are in June. Praying for more of the same great news. In March, I marked FIVE years since my diagnosis and the start of my lifelong battle. It feels wonderful to be on this side of the trial.
The job is good. In January, I got a new position that includes helping in the office. I still work the playground and love the kids, and now I get to do more secretarial jobs, too. The kids get excited when they hear me on the intercom, and I still get lots of hugs on the playground. One rainy day, I opened my umbrella and was immediately surrounded by a mob of little 1st graders. My co-worker, Nessa, said she wished she had a video of it - every time I would move, my little kid-cluster shuffled along with me. So cute.
A few months ago, my hubby started seeing a new diabetes doctor. I went with him to his first appointment, and during her initial exam, she saw the huge "diabetic ulcer" on the bottom of his foot from the blister he got during our beach trip last August. She immediately sent us to the U of U ER. She was mostly worried that it was infected and had maybe infected the bone. I was pretty freaked out - that has been my worry since the day he got the blisters. I've known too many diabetics who have had amputations and/or have died due to feet problems. Thankfully, at the end of our 4-hr ER visit, it was determined there was no infection; AND hubby was referred to the Wound Care Clinic, where their main job is taking care of wounds just like his. It was another true miracle in our lives. Almost two months later, the wound is healing and it looks SO much better. But once again, I realize that I am not a very sympathetic nurse or caregiver. It's a terrible weakness. I get impatient. I find fault in the smallest things. I get "grossed out", which is not fair at all. When I think of all MY caregivers over the years, I'm ashamed of myself.
My sweet J-girl has traveled an important road the past few months too. Her independence is growing. She is gaining confidence in herself and her abilities. She recognizes the things (and people) holding her back & she's trying to move ahead. One giant step has come in finally getting a job. She is a new girl! She works at the local Megaplex movie theater, and after just three shifts, she's happy and busy. I love it. I knew it would make a difference in her life, which it has, but she needed to come to it on her own time schedule. It's amazing.
We still have one car, and now that J is working, it takes a lot of creativity to manage three people's needs for transportation. I recognize another miracle that I can walk to work, that J's shifts start after the hubby's shift, and that so far, things are okay. I try not to worry about tomorrow & the future. God will help us & take care of us.
We spent Easter and the beginning of Spring Break in Vegas at C & R's beautiful new home. A & L joined us there, along with my mumsy & A-niece, and it was such a blessing to be all together. The littles are the BEST & the bigger kids are succeeding in their adventures. I love them all dearly. They are my blessings & I wouldn't be here without them. Thank you, God, for forever families.
One of my favorite quotes from President Monson is, "Pause to pray and think to thank." It's the essence of life and hope and peace. I'm still learning to be better. Thankfully, as Elder Holland taught in last Sunday's conference session, "...God gives us credit for trying."
Tuesday, November 3, 2015
There have been many times in my life that I have seen and accepted God's limitless love for little ol' me. That's the key, isn't it? Seeing and accepting His heavenly influence in our earthly existence. He knows me as His child. He knows my name. He knows my joys and my sorrows. He knows what I need to make this life more bearable, long before I even realize I need it. I've written and talked about His miracles in my life--the healing, the peace, the comfort, the love--and I've even written about the way He often hands me a tender mercy in the course of a day, as if to say, "Here I am...and here I'll be, now and forever." Last Sunday, many normal, ordinary human beings--just like me--bore humble witness of that individual attention God gives us at the exact moment we need it. One called it his "Chapstick" experience, when the Spirit urged him to grab the Chapstick as he headed out the door for a routine run...and ended up with a split lip. Sure, he could have waited & used the Chapstick when he got home, but how grateful he was to have it right when he needed it. Others testified of tender whisperings while driving that saved them from serious accidents or injuries. My first thought while listening to these testimonies was my "temple mint gum" experience (I'm pretty sure I've written about already in an older post). It was such a positive realization that God knew my needs, it literally took my breath away. I'm confident "limitless love" is part of my every day life, and I'd like to start recognizing it more fully. My ALL posts will be showing up regularly as I gradually learn to see (and be grateful for) God's blessings in my little life.
Today's weather forecast was for strong winds as a cold storm front moved into our part of the world. To say that I dreaded every second I'd have to stand outside for playground duty in the first real winter storm of the season was an extreme understatement. I had tried to prepare myself physically by shopping for "layers" to keep warm--long-sleeved shirts, thermal underwear, gloves, boots, etc.--but mentally, I was a mess. I'm not a cold-weather person (so why do I live in a valley at the base of the Wasatch Mountain range?); sometimes I wear sweaters in the summer and I always sleep under a mound of covers! The very thought of being cold, wet, wind-blown, and frozen made my stomach hurt! I listened to the wind blow all night, and this morning, as I sat eating my cereal, it started to rain. Einstein wanted to go outside, but one sniff of that cold, Arctic air sent him running for a warm spot to snuggle. The thought came to me, "I'd better take an umbrella," but then I realized that my favorite two or three umbrellas were in the trunk of the car Janessa was driving to school at that moment. I'd have to walk to school...in the middle of a downpour. I'd be soaking wet and frozen for the next four-and-a-half hours! All I could do was close my eyes and plead for help: "Please, Heavenly Father, let the rain stop before I get to school in an hour..."
Limitless love. The rain stopped about 20 minutes before I had to leave the house and the sun actually came out. The wind was still hurricane-force, but I was toasty in my layers and my knit headband over my ears. Recess was comic relief, as tiny humans were blown around the playground like little squares of confetti! I worried for the kindergarteners...but I made it through the wind and cold without being unbearably miserable.
Now, tomorrow?? More predictions for terrible winter weather throughout the day. Even if God decides to let that storm come rolling across our playground, maybe we'll have indoor recess! One can only hope...and pray. But for today, I know He felt my dread and my worries and He put my heart at ease. I am so grateful.
(Pictures of my precious grands on Halloween:)
Thursday, October 15, 2015
In the beginning of my journey, there were many whisperings (and sometimes SHOUTS) of "you can't do that anymore." I had to give up a lot. I lost the ability or stamina to do some of the things I really loved to do. Cancer not only stole some of my freedom & peace of mind & health & strength, but it accelerated the aging process inside and outside my body. There were some things I thought I'd never be able to do or feel again. Though I'm not 100% by any means, I'm beginning to see the fruit of the motto, "I have CAN-cer, not CAN'T-cer!"
One of the weird things that has suddenly popped up after 4 1/2 years is that I have seasonal allergies again! All the sneezing, itchy eyes, scratchy throat hay fever that I used to have! Too strange. Who knows why it ever stopped or why it has come back now? One or two episodes required meds, but other than that, I've just suffered with it. Happily. Well...mostly happily.
My best "can-do" situations have come in the past month. The first one was quite obviously an answered prayer. Our neighborhood elementary school was looking for part-time substitutes for the playground and office help. At first, I doubted that I would even qualify, but after talking to a friend who has been subbing there for several months, I decided to give the application process a try. Before I knew it, I had been approved and accepted for part-time employment through the school district, which meant I could apply at any of our local schools to sub in "non-classified" (non-teaching) positions. My first choice, of course, was the neighborhood school because I could walk there easily (since the three of us registered drivers are still sharing ONE car!), but I also considered applying at my little grand-girls' school - wouldn't that be FUN to see them every day at school? My first official sub day was a Wednesday at the end of September...and by Friday, I had been hired to be a permanent playground "duty" and office helper! I started working every day the following Monday. Monday through Thursday, I work from 10:00 to 2:30, and Fridays, I work from 11:45 to 1:15. I walk to and from school most days, unless I need to go somewhere after. The timing is perfect - I can still take Dean to work & Janessa to Matt's house in the mornings to catch the bus (or she can take the car to Weber), and then I can pick Dean up after work. I rarely have a moment where I "sit" because I help the office ladies with stocking supplies and other little tasks in between playground duty. I LOVE the kids (even the "naughty" ones) and especially love getting hugs from my little neighbor-ward friends...but I don't love standing for hours on sore legs & feet. And wouldn't you know that this October has been the WARMEST (actually HOTTEST) in years? I slather sunscreen on my arms & face, I wear my little blue/white brimmed hat and my sunglasses...and still, I feel like I'm slowly being baked. I have tan lines on my FEET!! I watch the weather reports & cheer when the forecast goes below 70-degrees! I know it will soon be cold & wet and I'll be complaining again...but for now, I'll just be glad for a little fall weather. I know I still need to build up my stamina because I come home so exhausted I have to nap before dinner. But it's a JOB! And I like it! I can do it!
The second "can-do" is that I'm playing church volleyball and it's FUN!! I tried to play last year, but worried about bruising from taking my high doses of blood thinners. I'm still taking Warfarin, but not enough to cause easy bruising. I loved playing volleyball as a teen, and I think I remember playing on the ward ladies' team long, LONG ago. So, I was excited to find out that I CAN still play! Wahoo! I can do it!
Little baby steps. Yay for me!
Thursday, September 17, 2015
At the end of August, we were able to fulfill a dream, but I didn't realize it was more MY dream than the rest of the family's. I've been a farmland, desert, mountain-loving girl my whole life. Who knew that the BEACH could move me so much? Now I know, and I can feel myself going through physical withdrawals since we came home.
Last year, Chels & Rob & kids shared a tiny bungalow in Newport Beach (CA) with Rob's family for a week. They raved about the adventure and planted the seed for a future trip with the rest of us. Knowing that my own "poor neglected" baby had never seen the ocean in "real life", I promised that we would save our money and join them. It became a sort of graduation gift for J and unique vacation for Dean and I. Without going into all the details and worries of how we were actually going to make this thing work, I'll just say that it was a tummy twister from the beginning. By the time we'd finally paid our part of the week's rent (thank goodness we had a gracious "payment plan"), worked out the logistics of going on vacation just as J's freshman year of college was beginning, and finding a suitable dog-sitter for our pup, I was sure I had developed an ulcer. In fact, I was down-in-bed sick just two days before we were supposed to leave. Thank heaven for answers to prayers.
We took the scenic, cheap, and exhausting mode of travel - we drove our car. The trip TO the coast - not so bad; the trip BACK - excruciating. But the in-between was full of pearls - a whole strand of wonderful made up with individual amazement. In typical (for me) list-making behavior, those little beads of bliss were, as follows:
**reaching our destination by coming to the END of the freeway! Freeways end? Really? Wow...
**staying in the cutest, movie-worthy beach house that became our own secluded island, despite being six feet away from the neighbors on both sides
**walking 50 steps (give or take) from the white picket fence to the crashing waves of the Pacific!
**the sound of waves! the cool sea breeze! the foam! the sand! It actually gave me the same thrill I get when I'd walk through the gates of Disneyland. I just want to sob with joy.
**treasures in the sand - shells of every color and size, feathers from several species of birds, and PENNIES. Yes, my dad was there, watching...
**surfers! My own personal exhibition from bronzed, blonde, fearless SURFER DUDES! They arrived every morning to catch the perfect swell. I quickly learned to watch for the one who came up out of the water and perfectly flipped his hair away from his face with one swoop! I was mesmerized by the kids and girls as well as the young guys - one of my favorites was an older man who daily struggled to pull a pair of plastic flippers onto his feet. He probably started surfing as a kid & now used a boogey board to ride his wave clear to the beach. An old pro, still playing in the sand and the surf!
**the gift of seeing a pod of DOLPHINS one morning, their shiny silver backs gliding up & down out of the water! Spectacular!
**bicycles everywhere... It was rare to see a "mountain" bike; no, these had sturdy tires, wide seats, baskets on the handlebars, and one speed - the speed of pumping legs...
**Californians are PROs at parallel parking! Where parking is at a premium, these people can maneuver a car (or even a truck) into the teensiest spot available. And of course they don't pull into a spot, no, no. They do it exactly like the driver's ed film say to do it! Zip, zip, zip, ...and they're in. I admit I was jealous of their obvious skills.
I'm sure I could go on and on. I told Chels that I truly was "on vacation". There was no drama, no worries, no schedule to keep, nothing to hold me in either the house or on the beach, living comfortable and non-stressed. I didn't care what I looked like, what I was wearing. My skin felt moist & soft, my poor dry nostrils were clear and painless. I ate what I wanted without any problems. I slept all night without waking, the windows open, a small fan whirring softly. I wanted to get to the beach as soon as I woke up, and I wanted to watch the beautiful sun set at the edge of the world every night. Sometimes, the power of the waves pounding against the shore had me whispering, "Oh Lord, my God, how great thou art!"
Sadly, my J-girl remains a mountain fan. She was disappointed with the salt, the sand, the heat and the humidity. She would rather pull on a big sweater and hike trails on a cool Wasatch morning. She may not ever choose to go back. But me? Yes. I miss it. I was recharged. Maybe next time, I'll go solo. I'll sleep under the umbrella...and read more...and write more...and sit, barely breathing, as the surfers catch a wave.
Sunday, July 12, 2015
Lately, I've been thinking a lot about freedom. It comes with the month of July, I'm sure. Naturally, my thoughts center on the blessings I enjoy as an American - living in a land of liberty & independence - but I've also been affected lately by witnessing freedom from "bondage", literally and metaphorically. We are all victims of our own "human-ness"; none of us are free from sin, none of us are immune to our own trials and struggles. Some of us are in bondage to our own weaknesses and despair; some must move forward, in spite of past mistakes. Some of us live day-to-day, praying for freedom from pain and illness; some are blessed with a fragile freedom from worry for a season. I cherish my own freedoms, especially the blessing of being able to embrace the truths I believe and to worship the loving God I know as Creator, Father, King, and Lawgiver. His word is eternal & unchanging. He loves all His children, and like any good parent, He has set rules and given us commandments to ensure our ultimate happiness. I have learned through experience that obedience brings peace and deep joy. I have also learned that when I try to "do my own thing", happiness is fleeting and finite.
I continue to do well physically. I'm grateful for the strength & energy to enjoy activities with my sweet family. We were able to spend time together over the 4th of July, and it was wonderful. My children are all healthy & happy and my beautiful grandchildren are my treasures, more precious than anything else in this world. Dean has been blessed to work some overtime, which helps pay bills and solidify plans for a beach vacation in August and give our soon-to-be college girl a bit of financial help to her first semester of school. It is an answer to prayers, and I'm thankful my husband has the health & strength to bless our family. In this "off" time from Huntsman appointments, I'm trying to get some "maintenance" things done. I have an appointment to get my right ear cleaned out again soon. It feels plugged and is pretty annoying...except when I sleep on my left side and can fall asleep to muffled silence! I also need to find a new dermatologist and get my skin checked. There is always something to watch and keep on top of...
More fun times coming for Pioneer Day. July is a busy month, but I love our family traditions! God bless America!
(Pictures from our 2nd annual Ruth's Diner 4th of July breakfast, complete with catching Janessa in a sneeze, fireworks & other fun B times!)