Trusty Buddy

Last Monday, July 16, 2018, I had my last appointment (knock-on-wood, cross fingers & toes, pray continuously evermore...) as a cancer patient (but new SURVIVOR) at Huntsman Cancer Institute. I was there to have my six-year old trusty buddy vein port removed. Six years, I've been told, is a good, long life for Buddy Port; and although he has become a bit more wobbly in the past few years, he has never failed to give up blood enough for all the lab tests and to deliver meds needed for scans & MRIs ,etc. My tiny, overworked veins have been blessed, and every time I've avoided the multiple "sticks & pokes" from well-meaning nurses, my heart has rejoiced. So, it was with mixed feelings that Ness and I entered the hospital just before my 2:00 pm appointment. 

I had no idea what to expect. When Buddy Port was implanted, I was given general anesthesia, and I woke up to find him sewn into my body on the left side of my chest (normally they're placed on the right side). Dr. Carolyn made the removal sound much less "surgical", indicating it would be done under localized anesthesia and I'd be in & out fairly quickly, so I was a bit surprised when the radiology department called a few days before the appointment to go over my "instructions": no food after midnight Sunday, water or clear liquids up until 10:00 am on Monday, and someone needed to be available to drive me home. This sounded a lot more extreme, considering my appointment wasn't until 2:00! 

The waiting room was packed. (See what a difference early appointments make?) After checking in, we sat and started to wait...and wait...and wait. I was thirsty and hungry. A nurse came out to talk to a lady sitting near us, apologizing for the long wait and telling her that her husband was next to be taken back to surgery for his procedure - she didn't want the wife to worry that something had gone wrong. Ness and I looked at each other and wondered just how long this was really going to take. 

At 2:30, I was called back to the procedure area. I was in the first curtained-off "room" by the door. The nurse told me to put on the gown, but I could leave everything on from the waist down. When she left, she didn't pull the curtain tight up to the wall, so I felt exposed as I got changed. I backed up as close as I could to the wall, just in case anyone walking by peeked in, and got undressed faster than I ever have before. For a while, I sat on the bed, but my back started hurting so I sat on a chair. There was a guy next to me, who may have been homeless, talking to someone on the phone about borrowing some cash so he could "call a cab to drive him back to the motel". A parade of nurses, doctors, and social workers went in to talk to him, trying to convince him that they couldn't release him to take a taxi home - it needed to be someone who could be trusted to deliver him to his "home" and be available to contact if there was a problem later. I felt so bad for him. He told them over & over that he didn't have anyone like that he could ask. I felt so grateful for my own abundant blessings of family and friends.

The surgeon came in to go over the procedure with me. He asked about my INR numbers, if they were always so high. I was confused. I told him I had long ago stopped going in for weekly blood tests and taking blood thinners. He looked back at my lab results and realized he'd been looking at numbers from 2015!! I was just happy he hadn't cancelled the procedure over that "little" mistake.

The nurse returned to put in an IV for the anesthesia (Valium and some other local numbing med). After the first "stick" failed (Waaah, I was already missing my Buddy Port and he wasn't even gone yet!), she tried a tiny vein in my hand. I was ready, but the room was not. Poor homeless guy left to get his biopsy, moaning and crying all the way down the hall, and now new voices were heard from behind their own curtains. Curtain No. 3 was a man who had received a trusty Buddy Port to get him through chemotherapy and now needed pain meds for the incision. His wife was urging him to ask the nurses for some Tylenol, but he was resisting, thinking he could "handle it". Finally, he gave in. Curtain No. 4 across the aisle was a man who had lost a leg to cancer and was having some kind of procedure on his throat (not necessarily another tumor because his wife was telling every doctor, nurse, and aide that he had had a scan earlier that showed no more evidence of disease). He joked with those who asked how he was doing. "Fine," he said, "except that I don't have a leg," or "Fine, except I feel like my throat has been cut." Yes, I heard their whole life stories in a nutshell until someone somewhere turned on overhead music - oh, yes, thank you! I was getting very antsy. I had left my phone in my purse with Ness, so I didn't know what time it was or how she was doing or ANYTHING and HOW MUCH LONGER DO I HAVE TO WAIT? Just when I thought I'd jump out of my skin, the music played some simple chords and there was my Ed (Sheeran), singing "Perfect". I could have cried with joy & relief.

When the wait became unbearable again, I went in search of a nurse. On the wall at the nurse's station was a clock - it was 4:30!! No wonder I was bonkers! I asked the nearest nurse if she could tell my daughter that I was okay and that I hadn't been in to surgery yet and I'd been here since 2:00 and my girl has red hair and a black tee shirt on... She immediately said she'd go tell her. I shuffled back to my curtain and two minutes later, there's my Ness, looking just as relieved as I felt. "I didn't just tell her," the nurse said. "I brought her to you." Thank you, thank you, thank you.

Not long after, I was taken back to the procedure room. It was dark-ish and 63-degrees cold. The nurses were busy getting things ready.  They asked what my favorite color was, and when I said green, they switched on green fluorescent lighting. They asked if I'd like some music, and when I said my favorite Pandora channel was Ed Sheeran, they cheered! Ed sang to me through the entire procedure - I love him - what a guy!! I got a warm blanket, oxygen through my nose, and I did not feel a single pain through the whole surgery.

I walked back to my curtained room and someone brought me a cup of delicious apple juice, which I gulped down. Had to wait a little bit for my blood pressure to come up - it was way low for a while there. As soon as it climbed over 100 (104 actually), I was finally discharged. I felt fine, but I was starving. Grabbed some Lorna Doone shortbread cookies (shared with Ness 'cuz she was starving too) and out we went. We celebrated with dinner at Spaghetti Factory (which I paid for the next day, unfortunately, but it tasted so good!) and we were home by about 7:30. 

No more Buddy Port, but another great scar to prove he was there & had done his job well. Very, very well. Thank you for every pain you took away...it made such a difference in my cancer fight.

Best Update

July 12, 2018

REMISSION ACCOMPLISHED!

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.

Mercies in Disguise

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.

Think to Thank

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."

(Missing 2-yr old Jax, who escaped from the group as the photo was taken!)

Accepting Limitless Love (ALL)

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:)

Getting Rid of Can't-cer

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!

Beach Bliss

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.

Let Freedom Ring

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!)

Unchartered Territory

Last week, the date arrived for my 6-month scans. It had been long-awaited and fearfully anticipated. Though I had no symptoms to make me fear the outcome, I was still anxious. I had nightmares of looming tumors that had grown over the past six months and would now make their presence known with a vengeance. All the recent sleepness nights and aches & pains could only mean bad news, right? I tried to be hopeful, but I found myself rehearsing my reaction to both the possibility of new cancer growth and no cancer growth. I could feel myself crumbling if the news was the worst...and breathing sighs of relief if the news was fantastic. It was hard to wait; I only wanted the  anticipation to be over.

Happily, to my great & profound relief and gratitude, the news was the best. Carolyn came into the exam room, asked how I was doing, and immediately announced that my scans looked wonderful. "Clear scans, no new growth!" It was almost unbelievable. I think I was in shock. Lindsey and I were thrilled to tears. We laughed and listened and studied the progression of scans, comparing them to the ones in the past and marveling at the disappearance of those golf ball-sized tumors until all that remains today are minuscule slits of white scarring. Unbelievable? Yes, and no. "With God, nothing is impossible."

New scan dates were made for December, another six months away. Lindsey asked how many "clean scans" we'd need before we could  "graduate" to yearly scans. Carolyn's answer was, "I believe it's after four or five years...but I have to tell you that this is really unchartered territory. We aren't used to these kinds of results. You're part of an amazing story of immunotherapy that has worked exactly the way it should, and it's wonderful." Yes, indeed, it is.

So, so grateful for miracles and prayers and blessings and fasting with a purpose and the never-ending kindness of a loving God. I have lost much in the past six months, including blogger friends who were inspirational examples of courage and love and service. Sometimes I wonder why I am the recipient of a longer life, second & third chances, and relatively good health while they have been taken "home" to our Farther. I believe our time on earth is known and set, whether we are taken in old age or babyhood or in accidents or illnesses. When it's time, it's time. We take with us what we've learned through our trials and suffering or in our innocence. No matter what, we return to where we are loved and cherished and where we are welcomed by loving heavenly parents. Unchartered territory? Maybe, but only for us here on earth...

(Pic of my "new hair" in honor of my birthday & summer & just because...)

Answered Prayers

It has been a week of reflection. Four years ago, after hearing the devastating diagnosis of melanoma from dear Dr. Bradley, one of my first thoughts was of my baby girl's future. I wasn't particularly afraid for myself, but of what such a test would mean to my family, especially my 14 year-old, ninth grader. I knew my older children would be supported & comforted by their wonderful spouses and their sweet little children. I also felt my dear husband would gain peace through his life-experiences & faith. But the tears fell as I thought of my young, inexperienced, quiet, sensitive daughter going through difficult days, months, & years of having a mother with cancer, who might or might not die at a young age. Over & over again, I told my doctors and nurses that I wanted--no, NEEDED--to live to at least see my precious girl graduate from high school. At the time, anything that came after would be sweet icing on the cake.

Miracles happened. Last Thursday night, June 4, 2015, I sat in a packed auditorium next to my sweetheart, tears again rolling down my cheeks, as I watched my beautiful, smart, hopeful daughter walk across the stage, dressed in her white gown, a white cap on her head, to receive her diploma of graduation. I may have even sobbed out loud. I was so proud, knowing she was battling anxiety that threatened to overwhelm her, and yet, she appeared confident. & poised. I could imagine her sigh of relief to finally sit down and relax through the rest of the program. (Earlier she told me, "Thanks for marrying Dad so my last name would start with a 'B'!") I love her with all my heart. I love how freely we can talk to each other. I love how she shares her whole life with me. I love that I have been blessed to see all her accomplishments, triumphs, frustrations, and dreams of the past four years. And I am grateful to God that He continues to allow me good health & energy to keep up with her as she makes new plans for the future. My prayers continue, but now I pray to see her married...and to see all my grandchildren progress & graduate too!! I'll be there!!

Also enjoyed a wonderful 56th birthday with all my children, grandchildren, and my dear mama in St. George! I couldn't have asked for a better gift. 

Scans are looming once again. I have no worries, other than the weight I've gained over the past six months. Blehhh! Summer plans include better, healthier eating and daily exercise. I can do it. I can really do anything with prayer & faith in my Lord. I am blessed.

In Memorium

Soon after I was diagnosed with cancer four years ago, I started following the blog of a young mother who was also battling melanoma. Alisa and I shared some similarities - we both lived in Utah, we were both mothers, we were both members of the Church of Jesus Christ of Latter-Day Saints with firm testimonies and faith, we were both patients at Huntsman Cancer Institute and were both being treated by Dr. Grossmann. During the past four years, I've read Alisa's blog entries regularly, always curious about how she was handling some of the same issues I was going through, and marveling at her bravery and determination to try every treatment available, no matter where she had to go or how difficult it would be for her. She continually amazed me with her medical knowledge; she was trained as a nurse, but she also explored all her options to the fullest extent to understand the procedures, the side effects, and the long & short term outcomes. We both tried to qualify for trials & experimental drugs for the best results to fight our tumors, but I always felt Alisa suffered far more than I did, spending agonizing weeks in the hospital receiving chemo treatments in far-off cities that took their toll on her body and her appearance. Her most recent treatments stole her beautiful hair, but did little to diminish her love for her Savior, her family, and her home. In January, she was hospitalized with severe pain from tumors that continued to grow, despite aggressive chemotherapy. When she was too weak or sick to type, her blogs were often "voiced" by her good husband, who did his best to give updates to all of us followers who hung on every word. When days (and sometimes weeks) would go by without an update, there was a clamor for even a snippet of news about our friend & sister--how was she handling the pain meds, would she be coming home soon, how were her boys & husband managing, etc. Some days I was afraid to read the latest, afraid for the worst news. About two weeks ago, she went in for scans and found that the tumors were invading nearly all her major organs. One of her last blog updates was simply, "We are going home with hospice care." Unfortunately, I've come to recognize that cancer rears its ugliest head when pain becomes unbearable and can't be sufficiently managed with medications and hospice has to be hired. When that time comes, it isn't the spread of tumors or the fear of the effects of chemo that brings a fighter to their knees, it's the terrible, searing pain that can't be erased. I saw it happen with my friend, Dov, who for years put on a brave face & used every bit of energy to ease the hurt of others until his own pain robbed him of strength & hope. I saw it in the writing of another melanoma mama's blog who went from supposed cancer survivor to cancer casualty within a matter of months, when pain drove her to long days and nights in bed and away from daily life with her sweet, young family. And then finally, blessedly, last Tuesday I opened Alisa's blog to see an update, which was also her beautifully-written obituary. Today was her funeral and I've thought about her all day. I read online that the elementary school her sons attended decorated the funeral route with balloons and ribbons, and then stood at silent attention as the hearse passed. It made me cry again. I've been sad all week for those of us left behind...

In four years, I've followed three wonderful people who shared their trials & triumphs in fighting cancer. They each had a different story to tell, yet their words were similar. They all had hope, they all inspired other cancer fighters, and they all came to realize how very important the moments we have with our families & friends are. 

I pray that someday I can embrace Kathy, Dov, and Alisa and tell them how much they influenced my life for the best during our shared time battling cancer. I learned sacrifice, service, and the importance of love from each of their written conversations and documented experiences.They are my heroes, my friends, and my fellow warriors. Thanks from the bottom of my heart... You will never be forgotten.

(Picture posted by Alisa's family the day of her passing...)

Spring Break 2015

It was Spring Break here a few weeks ago. I wanted to have BIG plans - go somewhere we've never been, do something we've never done - but life proved larger than the dreams and we had to think closer to home, more like our usual get-aways. Dean had started working a teensy bit of overtime (which was an answer to many prayers) and really couldn't afford to take a few days of vacation right now, so Janessa & I decided to go south on our own, leaving our two "boys" (hubby & dog) home. I'm very grateful for my hard-working husband & his selflessness in giving Ness and me a quick trip to the sunny south. We needed it. He needed it, too, but unselfishly agreed to stay home. 

When I proposed the trip to Nessi, her only request was to "do something fun every day". I called Chels and my mama and asked them to put their thinking caps on. Nessi's first thought was that she wanted to take a hike through the beautiful red rocks near St. George, and as luck would have it, our very own professional hiking guide, Cindy, was also going to be in town! What a bonus! I wasn't sure how I'd survive a hike, but Chels assured me there were plenty of "easy" trails for those of us who might have to limp along!

The weather was gorgeous. We left our house in jackets and socks, but had soon shed both for short-sleeved shirts and flip-flops. The drive was pleasant, especially without a small black dog jumping from the front to back seat for five hours! Mom was thrilled to see us & have us stay with her. She had energy and looked better than she had during our last visit. Chels & Rob and their darling kids were as excited to see us as we were to see them. It would be a wonderful vacation. 

One "fun day", we (Mom, Nessi, and I) spent a few hours at the Ford dealership to get the oil changed in her car and to run it through the car wash, and then went to see the new Disney movie, "Cinderella", with Mom and Chels and all the kids, except Jax (who stayed home with his daddy). It was wonderful. I held Olive on my lap the first part of the movie and then Knox climbed up for the second half. Olive was mesmerized by the costumes and the music. Knox happily munched popcorn from his own little sack until suddenly I realized he had slumped back against me & was snoring! 

Another "fun day", all us girls & kids went shopping at a great Old Navy "pre-Easter" sale. Nessi got a cute new swimsuit and swim shorts, among other fun finds, and we ate lunch at Cafe Rio. Later, Mom & Ness & I went to a huge nail salon, where we squeezed in among other "Spring Breakers" to get pedicures. It felt great on my pale winter feet! So nice to be pampered.

Saturday, we went to the downtown Arts Festival. Chels & Ness headed off by themselves to take some senior pictures for graduation announcements, and Olive, Knox, and I walked around the booths to check things out. Of course, Grammy had to take them for a ride on the Merry-go-round! It was sunny & warm, so we found a shady spot where kids were making cute Easter crafts and I helped them make beaded necklaces & colored plastic eggs. We were just about to get our faces painted when Chels & Ness appeared, ready to head home via a quick stop at Swig's for a pink frosted cookie! Yum! 

After a short nap, we were ready for the big hike! I wore a hat and a long-sleeved shirt and slathered my face & neck with sunscreen. We drove to a spot about five minutes from home (west of Green Valkey), where Cindy & Bob and other members of the family were waiting for us. Scoobie Doo was let out of the van, Jax was strapped into his daddy's backpack and lifted onto Rob's shoulders, we grabbed our water bottles, and off we went! I quickly discovered that my arthritic right knee was acting up, so any time we had to climb large rocks, I had to take either Chelsea's or Nessi's hand to lift myself up and over. Other than that, and being horribly out of shape & panting like a dog, I was able to keep up pretty well, even though I was at the rear of the group nearly the whole time. After a slight incline, we found ourselves in a beautiful ravine that wound its way through a natural bowl. The rocky terrain was a challenge, but the scenery was wonderful. Spring flowers were just starting to bloom and bright, pink flowers with a tissue-paper texture had popped out on prickly cactus plants. There was a breeze blowing that felt so refreshing. Every now and then, Cindy would stop and tell us about an interesting plant or rock formation or experience she'd had on a previous hike. It was so interesting. I was also very impressed with my little Olive. She is a natural hiker! She was at the head of the group the entire time, sometimes dragging poor Scoobie along or chasing him down a path. She was amazing! I was impressed with Rob and his little "load", Jax. I could barely make it on my own, let alone carry 20+ pounds of baby! Knox did well the first hour or so, and then he fell...and had to go potty (Rob:  "When you're on a hike, you can go behind a bush any time, Knoxie!")...and was basically DONE. When we reached the summit of the butte (we'd hiked about 90 min, which was halfway, pat that point), I was overcome by the view. We could see all of the west side of St. George and beyond. It was fantastic. Nessi & I could have stayed there for hours. The descent was gradual and we were able to look out over the lip of the bowl and see the numerous bike trails, rock climbers, and even a zip line to the other side of the mountain. Breath-taking. Even though we knew we'd be sore the next day, I loved it, and I loved that Janessa had wanted to do this "fun" thing!

As wonderful as this "easy" hike was, we were exhausted at the end of the journey. We had a quick dinner & went right to bed. I was achy, so I took some Ibuprofen - maybe too much. I had been asleep about two hours when I woke with terrible foot cramps, sweating from the pain. As soon as I could walk, I hobbled to the kitchen for some water and a banana (for the potassium) and laid down to sleep again. Soon I jolted awake with the worst leg cramps I've ever had - in my thighs! I've never had thigh cramps before. The muscles actually felt like they were being twisted in knots! Once again, I found myself soaked in sweat from the pain. I couldn't stand up to walk out the cramps. I simply had to wait it out. This happened one more time & I was getting scared. This was not normal for me. I started to pray with all my might that the pain would go away and not come back, and that I'd be able to sleep the rest of the night. I was finally able to lay down & fall asleep, and the next thing I knew, it was morning and I had slept for hours. The real miracle was that I had little to no pain from the hike that morning and I remained pain-free the rest of the day. It was only after our long drive home that I started to feel stiff again, but the cramps never came back. 

I think we made some wonderful memories in those few fun-filled days. That's all that counts. Simple little out-of-the-ordinary activities, a break from the hum-drum of life. Just what we needed.

Four Years

March 7 marked four years since my original diagnosis of melanoma. When I think back to that day, I remember rain turning to snow in the late afternoon, darkness, an empty medical clinic, tears, and fears. Much has happened since then. My life was changed forever. My family's lives were changed forever. There is never a moment I forget I have cancer because it will always be there - hidden at times , but always present. There are days I feel almost normal and there are days I feel sick. Four years ago, I wasn't sure I'd make it to 2015; now I have hope & faith to make it far beyond this year and the next and the next... I feel extremely blessed.

I was blessed to see my Janessa turn 18. I will be blessed to see her graduate from high school in a few short months. I am blessed to see grand babies born and growing. I am blessed to see their milestones as they journey through their precious lives. Birthdays, baptism days, school advancements & achievements...I am blessed to witness their good choices & joys. It is more to me than earthly treasures. It is everything. I look forward to every new step. 

Four years is only the beginning. There will come a day when I will say, "Eight years...", "Ten years...", "Twelve years...", "Twenty years...", and on and on. 

(Pictures from J's birthday and L's baptism day:)

Loving Concern

One of the best parts of our humanity is the desire to help our brothers or sisters in need. It is a tender, loving concern that transcends age, gender, race, or religion. It is the tugging of our heart strings and the whisper of a still, small voice that urges us to push aside our own comfort to give to someone else. I have been the humbled receiver and the grateful giver many times, but recently, I've been awed by the goodness of others who long to ease the burdens of a suffering friend. In some cases, it involves someone they barely know and have only heard about through social media, such as blogs or news reports, or through word of mouth. Some are friends, some are neighbors, some are relatives; some are in circumstances that mirror our own, some live a haunting existence, and some go from carefree to aching heartbreak in an instant. 

I regularly read updates on three of my fellow cancer warriors. I'm sure I've mentioned them before. Kathy and Alisa are both melanoma fighters, and Dov started his journey with a colon cancer diagnosis. All three are parents of young children and all three have devoted spouses & family members. Dov is the only one I have met in person. He is the epitome of hope and optimism in the face of harrowing pain, loss, and "bad news". Recently, he has been going through more painful rounds of chemo, and yet he continues to "walk the halls" of Huntsman, offering mini candy bars, words of encouragement, and heartfelt hugs to other cancer patients, all while dragging his chemo bags behind him. The other day he posted a plea for "good vibes", as he was going to have  another MRI to determine what could be causing an extreme pain in his back. Worse-case scenario: tumors embedded in his spine. The mere thought of it prompted him to ask for "help" from all of us. There was nothing physical we could do, but collectively we could pray, send positive energy and love, and keep him in our hearts & thoughts. Miracles happened. More tests will be performed, but spinal tumors were ruled out.

Alisa is a patient of my wonderful oncologist, Dr. Grossmann, as well as other good Huntsman docs. In the past few months, she has had new tumor growth instead of shrinkage and was finally accepted into a new chemo combo trial. Her infusions are given over the course of several days at a time, which means she stays in the hospital to receive the treatments. She started in January, and soon her blog posts were not in her own hand, but were being written by her husband & other family members. Alisa was in severe pain and spent most of her time in medicinal sleep. It was heart-breaking to watch and read. When she was awake, she was loopy, too drugged to make any sense. Her husband recently wrote that she didn't remember much of anything about those long January days. Again, there was nothing I could do physically - she was being tube-fed, she couldn't have visitors (germs & all that), and she was mostly asleep - but I could pray. And I did (and still do). Even though she is home now (until the next round begins), her husband's sweet posts make me cry. She is my sister, though we have never met.

Kathy, too, suffered terrible pain and sickness before she passed away at home on New Year's Eve. Her husband's post about that unimaginable day when he and his father and mother carried Kathy from the bathroom to the bed, knowing that she had already passed, and dreading the moment they would have to bring the children in to say goodbye to their angel mother had me weeping with a broken heart. I had never met her, but I knew her. I had prayed for her, for miracles to keep a young mother with her babies, but her time had come. I still read her husband's eloquent posts about his new, changed life without his sweetheart, and I still pray.

Our little neighborhood has been reeling from recent events, too. Our wonderful, kind, loving Bishop suffered a heart attack last month at the young age of 36. Our congregation was stunned and shocked at the news. Here was a man who exercised regularly, participated in life to the fullest, had a beautiful wife and four small children, and radiated a vibrant lifestyle.Tests revealed that he had a tear in his aorta, a condition that could only be resolved by open heart surgery or with medications to slowly mend the tear. A few phone calls and FaceBook posts were made, asking for fasting and prayers that he and his family could make the right decision, a request which rippled through the entire neighborhood & community. After a long stay in the hospital, in which he was kept as quiet and non-stressed as possible, further tests were done...and miracles happened. The tear had mended almost to the point of being completely healed, something his doctors assured him never happened as quickly or as well. 

And then, just yesterday, in the blink of an eye, something happened that got me thinking about our ability to "love one another." Sirens are a rarity in our little subdivision, but about noon, a horde of police cars, an ambulance, and a fire engine came racing past my home, sirens blaring. They suddenly squealed to a stop in front of the house directly behind us (we share a fence). I stood at my patio door, hair still wet from my late shower, no trace of makeup, sweat pants and bare feet, and watched as policemen scurried through my neighbor's open front door. Sweet, beautiful Faby, young mother of two little ones - was there a fire? Were the kids okay? Was Faby okay? That tugging, those whispers, would not let me stand & watch. I had to go, if for no other reason than to let my neighbor know I was there. As I came around the corner of our fence, two paramedics rushed out the door, cradling a baby between them. One held an oxygen mask over the baby's face, the other held a limp, seemingly lifeless body of a baby boy. Faby also came running out, carrying her own little boy, her daughter and another little girl close on her heels. Two other neighbors came out of their homes, each mothers of little ones. Faby struggled to tell the story as quickly as possible, handing her children off to the young mothers. She was tending the baby & his older sister and had laid him down for a nap, checking on him every few minutes because he had been sick and was congested. The last time she checked on him, he had turned over from his back to his stomach and was not breathing. She called 911 and started CPR.  The paramedics were able to get him breathing again, but he ended up being flown by Life Med to Primary Children's Hospital for further testing. The waiting was torture for Faby, even though the police & paramedics said she had done everything right. Hugs and words of comfort were exchanged before one neighbor took the little girls to her house to play "princesses" and another took Faby's baby home to play with her small son. I became the "storyteller", as neighbors poured from their homes into the street, worry and concern on their faces for the baby and for Faby. Our quiet little street was completely blocked off by police cars, sheriff vehicles, and neighbors who heard the helicopter from many streets away. Everyone I talked to offered help in some form or other, but mostly we prayed. When the baby was lifted from the ambulance into the helicopter, his little arms and legs were stretching and kicking against the blankets, and I felt in my heart that he would be okay.

This "loving concern" is a blessing, both for those who give it and those who receive it. It is part of our brotherhood and sisterhood. We are all children of God, siblings in a huge eternal family. No wonder our hearts ache for those who suffer and rejoice in the miracles and tender mercies that come from our Father. I hope to always keep an open heart that can be touched from within.

(Happy, happy February birthdays to these sweet treasures!)

New Year's Musings

It's officially 2015, New Year's Day. The old year is gone, along with challenging days, sleepless nights, wonderful miracles & joys, lovely timeless memories of family & friends, a little jumble of every emotion and thought. I celebrate those awesome, exciting times, but I also reflect on the difficult days. In spite of all the precious blessings I've been given, I feel melancholy creeping in today. It makes me feel terribly ungrateful and selfish. But maybe that's part of beginning a new year - experiencing regret & sadness and resolving to make life better in the coming days and months.

The happy, heart-warming season of Christmas is over. The family has gone home, the decorations are put back in their boxes, the calendar pages are turned, vacations are ending, and routine (often boring & stressful) is back. I see what has been neglected through December: the house needs a good scrubbing top to bottom, drawers & closets need to be rehauled, the paper trail is screaming for attention, and the desire to do & be better is urgent. I want to do it all, but I recognize the truth that nothing happens overnight. It makes me sad.

I'm also in mourning today. One of my sweet blogger friends, Kathy Taylor, another Stage 4 melanoma warrior, passed away yesterday at home. Her husband briefly and bravely posted about her death within hours of her passing and said that New Year's Eve would forever be a celebration of her life. His first concern, as he finished the post, was to comfort their sweet little children. I cried to read this news. Kathy held onto life with much hope and faith, and it blessed all of us with the same hope. I am grateful that she has returned Home to our Heavenly Father and is now without the severe pain of cancer, but I mourn for her family and friends.

We also went to our traditional New Year's Day movie today and saw the third installment of "Night at the Museum". I liked the movie a lot, but I was surprised at how emotional I became seeing the late  Robin Williams on the big screen. There were several very wonderful scenes between "Teddy Roosevelt" (Robin Williams) and "Larry" (Ben Stiller) that actually made me cry. I miss Robin and his wonderful humor and immense talent. He was a troubled soul, but he devoted his life to lifting others. It makes me cry now to think of him.

On we go. In the coming weeks, we'll be celebrating our baby girl's 18th birthday (what??), and working on applications for financial help with her college plans in the fall (again...WHAT??). I'll also be searching for a job that will fit my "new life" - at least for the next 6 months of no scans or treatments. That scares me, honestly. I just want to write books. I want to be my girl's taxi service because that's where our best conversations happen. I dread dealing with drama, (more) stress, time restraints, exhaustion, etc. But the bills keep coming & lottery tickets are too expensive - ha! I pray that the Lord will guide me in the best direction. He knows where I should be & what I should be doing. He knows the Big Plan. I'll be listening carefully to the whisperings of the Spirit.

Happy New Year. May it be one of kindness, joy, health, love, faith, and hope.

The Christmas Miracle

I've been silent the past few months because I was in the midst of enjoying not having to think about my cancer. Four months of no scans or worries...it was fabulous. I admit that I spent more time than I should have just resting and not actively doing much of anything. I loved my quiet house after taking my girl to school. I loved cleaning up the kitchen from dinner the night before and hearing the dishwasher rumble away. I loved getting toasty under a blanket and rocking my puppy on my lap and reading book after book after book. I loved falling asleep on the couch, in my bed, or in the recliner in the middle of the day. I loved going without makeup and not caring. I loved eating donuts and cookies and Halloween candy. I felt good.

But, I was still worried. I wasn't taking care of myself. I had been given so many wonderful blessings of healing and health, and no matter what cancer had taken away from me, I still had so much to be grateful for. As Thanksgiving approached, I realized that my four months reprieve was quickly coming to an end. Celebrating all that God had given me opened my eyes - I have a beautiful, supportive family and wonderful, caring friends who pray for me every day. They deserved better. As that holiday weekend with my family in the "south" ended, I resolved to eat better, to go to bed earlier, to pray more sincerely for those facing struggles, and to try harder to live every day with more purpose. I have not been entirely successful, but going sugar-free & getting better sleep & praying with a grateful heart has  helped me feel better. I still worry, but much is beyond my control and can't be solved without time and patience.

Yesterday morning, Lindsey and baby brother and I headed up to Huntsman. I was feeling good, happy to have lost a few pounds and not finding new lumps or bumps. I was grateful to have Linds with me, even though she's been working hard getting ready for Christmas. Bless her heart...she helps me in sooo many ways, too many to count. I love her and am so thankful for her. Having baby brother there too was an added gift. He makes me smile. The CT scan was quick; even better, I was done with drinking the contrast. Not only does it make me shudder to drink it, but it hurts my tummy and makes me sick. It usually takes me a couple of days to get it out of my system, so I'm kind of out of commission for awhile after my appointments. The brain MRI took about a half hour and I listened to Christmas music to help me stay awake & not go bonkers listening to the MRI machine. It was lunchtime when I finally finished, so we had a yummy spinach/chicken/strawberry salad at the "Beast" (Bistro). We had told all the techs that I had a doctor appointment at 1:00, so we were praying hard that the scan results would be ready by the time we got to Dr. Grossmann's office. (I usually have the scans one day & the doc appt the next day.) With a gurgling stomach, I was weighed (lost 9 lbs in about 3 weeks!) and we were taken to an exam room. We expected to wait for awhile, but Dr. G came in after a few minutes with a new intern, Gerry. He sat down, asked how I was feeling, and in the next breath, he said, "Your scans look great. I don't see any tumors. Merry Christmas!" As Linds and I gasped and shed a few tears, he showed me the scans on the computer and pointed out the differences between past scans & tumors and the new scans. The tumor in my back showed a very small shadow, which he felt was probably scarring. The tumor in my groin was completely gone. Nothing in the liver or anywhere else. It was miraculous! I think I was in shock.

Leaving Dr. G's office, his assistant, Carolyn, came down the hall with a huge grin on her face. She gave me a big bear hug and said she was so happy for my good news. The ladies at the reception desk reacted just as happily. Pam said we needed to go out & celebrate! Nancy, the nurse in the lab who was de-accessing my port, congratulated me and told me I was the "poster child" of survival. I mentioned something about how happy I was for myself, but how sad I was for those who would not get good news for Christmas. Then she told me that I should never feel undeserving, that other cancer patients, especially those with melanoma, needed to know that there was someone who was responding to treatments and was moving forward to long-term survival. She said it was important for the doctors to be able to tell their patients about me, to give them hope and show how the new research & meds are saving lives. I had never thought of it in that way. It made me feel better about my own purpose.

Everything now is hopeful and long-term. Because I am a late (and slow) responder to the Ipiluminab, it has continued to work long past the chemo treatments. Dr. G said we "cheated" a bit by radiating my back & groin and kick-starting the Ipi, but we all laughed when he said, "I'll cheat against melanoma any time." If nothing happens in the next six months, statistics say that I should have a long-term survival of more than 10 years! What a long way we have come since the day Dr. Bradley said, "You have melanoma and there's really no cure." As Lindsey said, "Take that, Stage IV!"

My next scan appointment is in June! Summer! My girl's graduation! Six months! I prayed long & hard from Day 1 to see my girl graduated and never ever thought I'd get to this point...and here it is, our Christmas miracle. This is my gift and it is all I have prayed & hoped for. Thank you, Jesus. I know who gave me this gift...and I love Him with all my heart and soul.

May God bless us this Christmas. I know He has blessed me.

Full in Body & Soul

I have finished the blood and iron IV infusions. I wish I could say the end results were miraculous, but the truth is that after the Monday treatments, the energy and overall good feelings would only last until about Thursday. After that, I'd feel the need for more and would start counting the days until the next infusion. Now they're over and I can only hope that things are working well on the inside. I'm trying to eat a little better (though bags of Halloween candy somehow find their way into my shopping cart) and last weekend, Chelsea brought me some kefir grains to grow my own kefir. The list of good benefits, especially for someone like me, is amazing; but the hard thing is getting used to the kefir. Chels suggested I start out using about 1/8 of a cup a day by mixing it into yogurt or smoothies or soups, etc. I would really like to see it improve my stomach aches and give me better digestion, but it's taking time and patience. I'd love to be full of good things - nutritious food, healthy vitamins, peace & calm, joy & hope. Some days are better than others.

During the last two treatments, I had another small worry. Apparently my port has become "wobbly" or "tipped" (according to nurses). For almost two years now, the port has been my little miracle - easily accessed for both infusions and blood draws without being poked in the arm five or six times. When it was being accessed for the fourth of the five infusions, the nurse had to try twice before the needle went in smoothly. She told me to tell the nurses the next time it was accessed that it tended to flip to one side. So the next Monday, I forgot to say anything until the nurse couldn't access the port the first time. She pushed and pressed, trying to stabilize it on her own, but she still missed the target the second time. She is one of my favorites, and she kept apologizing over & over. Finally, she called another nurse to stabilize the port while she put the needle in. The third time was the charm & it worked perfectly, but I was sore and bruised around the port for several days. I asked what caused ports to become "wobbly" and she said that after a certain amount of time, the tacking around the port might come loose. But she also said that sometimes ports will flip all the way around, but they can still be accessed okay. I also called the doctor's office to see if we needed to do anything right now, and Rebecca said we'll wait until after my scans in December. Just hope it will work okay then.

I loved having Janessa go with me for the infusions a couple of times. Even if we don't say a word, it's a comfort to have her there. She didn't go for the fourth treatment and I wish she would have because I had a great visitor. Dov Siporin is a chemo veteran who has gone through more treatments than anyone I know for Stage 4 colon cancer. In spite of this, he roams the Infusion Center & the rest of Huntsman, joking and bringing joy to other patients. He is also very sensitive to hardship and suffering, and we talked about how something as wicked as cancer can bring people together - people from all walks of life and backgrounds who share the fight against our individual Goliaths. He is wonderful. He was handing out mini candy bars and cheering us all in our battles, even as he pushed his chemo IV stand around the room. I wish my girl could have met him. He is such an inspiration to so many warriors. 

Lately, I've been thinking & praying for a couple of beautiful young mothers who are also fighting melanoma. I've mentioned Alisa before in my blogs. She was diagnosed several years ago and after treatment, went through a period of time without any new spots before the cancer hit again - hard. She's tried many of the same chemo treatments & trial meds that I have, with varied successes & failures. Her last big treatment was a powerful chemo that took her hair (for the first time) and seemed to be successful in shrinking her biggest tumor. But at her next CT scans, she found out that the tumor had started growing again. It was "back to the drawing board." I was so sad for her. This ride is a roller coaster that never lets you off. The second woman is Kathy, who was treated for melanoma on her back many years ago. She & her husband are the parents of five little children and Kathy was pregnant with her sixth. She started feeling pain and knew something was wrong, so she went to the doctor & found out the melanoma had returned. When her system started shutting down, the doctors said she would have to start treatment to save her life, which also meant she had to deliver her premature baby, who only lived a few days. Her family was prepared to tell her goodbye, but she rallied a bit & was able to go home with hospice care. That was about two or three weeks ago. Last week, she started to go downhill again, unable to keep down her chemo medication or the anti-nausea meds. Then she started to hemorrhage and was rushed to the ER. Her husband said that they decided not to have the children come back to the hospital. They wanted them to remember the better days when Kathy was able to read to them and snuggle with them at home. They had also decided to let Kathy pass without further treatments. I have checked her blog every day to keep updated & so far, she is hanging on, even eating French toast & pizza that she has not been able to eat for about seven years. I am amazed at both Alisa's and Kathy's hope and gratitude and faith in God. I am inspired by their lives, but I pray for their families and that their last hours & minutes will be peaceful and spiritual.

Last weekend, all my children & grandchildren were available for family photos. We haven't had an all-together picture in two years. I'm excited to see how they turned out. Not to be biased or anything, but I have a gorgeous family! I'm very blessed.

 

Every Little Thing

The other day could easily have qualified as a "bad" one. It seemed I couldn't catch a break, no matter what I tried. When J got in the car after school, I listened to her cute ramblings about HER day and waited to intrude on an obviously awesome school experience - which, by the way, doesn't always happen for her. When she was quiet, I said, "Well, I hate to tell you, but the Internet is down again." Her shoulders sagged. "Really?" I told her I had tried to fix it myself by unplugging & plugging in wires here, there, and everywhere, and it just wasn't responding. At least we had phone service this time, so I assumed the modem had finally died & I was going to have to fork out the few dollars needed for a new one - dollars earmarked for a REAL necessity. I almost stopped at the office supply store on the way home, but decided to wait a few more hours. "And that's not all," I continued. "I ordered you some jeans to replace the ones with holes in the knees & pockets and the delivery tracker said they were put in the mailbox a few days ago. I went out to check if there was a key in our box for the larger package box. There was...but I couldn't get the key in the lock! It seemed to be bent, like someone had forced it. I attached a little note to the key, asking if the mailman could check it out, but I was also going to have Dad try to open it somehow when he got home from work." She was excited about the new jeans, but shook her head as the story unraveled. Good grief! "AND..." I began, as she frowned, "I got the schedule for my iron infusions and they will be every other day for five cycles. So, three of the days are for 3:30 & we can do that, but one Wednesday is for 2:30 (the same time she gets out of school) and one Friday is for 3:00. I'll have to find someone to come pick you up on those days." Yep, it was officially a BAD day.

But... The story continued. We walked into the house, pretty dejected, and J immediately pulled out her iPod and tried to get service. She looked at me in shock. She had Internet service! I grabbed my iPad, ready to start reading email & Facebook for the first time all day...but it was not to be. Mine said, "Server not connected" or some such bad news. Okay, what to do? The thought - the comforting, peaceful thought - whispered, "Turn your iPad all the way off & wait a few minutes." J nodded her head, knowing this was a great suggestion. I pushed the off button, waited, pushed the button again for power...and HOORAY! Internet! Everything working perfectly! Thank you, God.

Now out to the mailbox. As we approached the box, we could see the larger one was slightly open & there was the package with J's new jeans! The key was still in our box, but the mailman had come & opened the bigger box for us. It was a blessing, but more than that, a miracle...because I don't pick up my mail every day (gasp!) and sometimes many, many days go by before I walk those few feet to the box. Luckily, miraculously, it had probably only been open a half hour at the most & was still there waiting for us. New jeans that fit awesome on my tall, skinny girl! Thank you, God!

We went back in the house and the phone rang. It was Rebecca with Dr. Grossmann's office. She had heard from the Infusion Center that the proper way to do my iron cycle was to do the five infusions once a week. She gave me my new schedule and it was every Monday (I'm here right now for the first one) at 3:30, except for one, which is at 3:00. On the 3:30 days, I can pick J up and drop her off at home and still make it on time for my appointment (was even a little early today). On the one at 3:00, she'll come with me & do homework or watch YouTube or something. It will work out perfectly! When I told my girl the news, she said, "Looks like all your bad news suddenly changed to GOOD!"  It is just more evidence that God watches over me & my family and has a hand in every little thing. He may not take away ALL the worry & sadness & pain & disease and real life experiences & consequences, but it's those little things that bring hope back to my life and teach me how very much He loves me. Thank you, Heavenly Father, for all You do!