Sixteen Years-Life Goes On

Last Monday, October 28th, was just another day. I spent a busy day at work teaching High Schoolers. It is a race everyday to get everything done I need to. Teaching, grading, planning, and prepping. I feel energized while I am at school and love the interaction with students. It is when I get home that my energy wanes and I need a good hour of peace and quiet to rest and recover. I use to blame this all on cancer, now I think it is just my body growing older. But what was really unique about this day, was that it was just an ordinary day. Monday slipped by in complete insignificance of how my world was completely dumped upside down on that day 16 years ago. October 28, 2008 was the day I was diagnosed with Multiple Myeloma a rare blood cancer. How did that happen! How would I have reacted if I had known 16 years ago that I would get to a point where my life would be so full that all the pain and fear would dissipate so completely that it would no longer be constant in my thoughts. The longer I live, the more I recognize the miracle of my life and the blessings of good health, an amazing family, and the opportunity to grow old with the ones I love.

Joe and I on a weekend getaway to Salt Lake City for LDS General Conference

Taking the older grandkids on a hike to the top of a mountain in Wyoming. Thank Goodness our son came with us to help.

All 11 of the grandkids (one more is on the way in March!)

Me and my dear, sweet mom

Looking out the window of our new home There have been a lot of changes in my life over the past 16 years, but the one constant is the peace and comfort I feel from my Savior. I owe my life and deep gratitude to Him for all of the blessings which he has showered down upon me thoughout my life and especially over the past 16 years.

10th Cancerversary!

Happy Canceversary to me!  It has been 10 years today since I was diagnosed with Multiple Myeloma!
My treatment included high doses of chemotherapy,  Melphalan, Velcade, Thalidomide, Revelomid, and two stem cell transplants.  This kicked me down to "barely breathing," but kicked Myeloma into a "Complete Response."   I was on Maintenance medication for about 4 years and have slowly regained my strength since then.  I continue to do blood tests and lab work every three months and scans and a bone marrow biopsy once a year.

To celebrate 10 years my family gathered in Salt Lake City with the LLS "Light the Night" event.
It was wonderful to have my whole family (minus two babies) together reflecting on this journey and rejoicing in LIFE!

34 years together and counting!!!!

                                           

We wore stickers saying, "Kelly's Kicking Cancer since 2008"

                       
                     

                                                               

I feel healthy and strong and try to keep cancer on the "back burner," where it can't take over my thoughts or negatively affect the day to day decisions I make.  I am a full-time teacher, wife, mother, and grandmother and I have so much to be thankful for!
So the big question is, am I cured?  Unfortunately there is no cure YET for Myeloma but good things are happening in the Myeloma research field and also in patient research.
                    Life is Good!

  Healthtree.org is a website and patient research platform that was created by a Myeloma patient and her husband right here in Utah.  Through patients sharing their specific types of mm and treatments with other myeloma patients and doctors around the world, researchers are able to find what works and why it works and then treat patients with the right treatment for their specific type of Myeloma.  This simple, free website uses the power of the internet to share useful information with each other instead of trying to reinvent the wheel with each new patient.

 I don't know why I have been so lucky at this point to be celebrating 10 years with no maintenance medications beyond my initial treatment but if others can learn from my experiences, I am glad to help.  Please check out this website and see what can be possible by sharing information.

Thankful Thursday #2

THANK YOU JOE for...................

Endless driving to dr. appointments,  drinks of water, and deepening dependence.  

Hugs and holding my hand, and masked messages only we can share.

Blessings and  strategic juggling of household chores and children's activities.

Earning a living while easing my burdens.  More than most men could handle.

Telling me I'm beautiful with my bare head and raw emotions.

Walgreen runs and a package of oreos under my pillow. 

Calming my housewife guilt with a gentle hand; leading me back to lie down.

Phone calls, "just checking on you calls," and "just because I love you," calls. 

How do I ever express my gratitude and love for this man that married me over twenty six years ago. 

Covenanting with me and God to be by my side as we began a life and family together.  

Both have given us more than one could imagine.  

Breathtaking mountains to climb and breath "shaking" changes as we race up and

 down this roller-coaster of a life buckled in tightly together.  

SPEED BUMPS

Wow how time flies when you are racing down the highway of life, motherhood, and  multiple myeloma!  

Life seemed to be cruising along quite well as I enjoyed the end of chemo treatment for now, and the beginning of school.  To be honest it was really nice to send the kids back to school and have a little more peace and quiet at home to rest and recover from treatments.

        Summer turned into fall as our family became consumed with sixth grade, ninth grade, and football, football, football.  It has been good to get back into a routine, although I still struggle with the getting even the basics(cleaning, cooking, laundry) done around the house some days.  I am told it will take a good six months or more to regain my energy and get the chemo out of my system.

       This fall my husband coached my youngest son's little league football team.  They had a great time and took things pretty seriously; winning most of their games.

       My fifteen yr. old son played on the high school freshman team.  He played with heart and struggled with his size; as he is on the smaller side of most of his his team mates.

       My 18 yr. old son finally got a job after searching half the summer.  He is working for a freeway construction company.  He drives to construction sites throughout the county collecting rock samples.  He loads the samples in his brand new work truck (yea I'm somewhat jealous!) and takes them back to a lab for testing. For the last ten weeks he has been working the graveyard shift.  This has been a major change for my extremely social son who basically eats, sleeps and then works 12-14 hr. a day,

       My previous post gave you a glimpse of the highlights of becoming a new grandmother.  It has been an amazing experience, and I am very lucky to live within a couple miles of this gorgeous growing baby and her parents.

      So that has been a recap of life on my highway over the last few weeks. There have been many good things happening along the way, but I have definitely ran into a few speed bumps as far as my health goes.  

     I am learning that remission does not mean the end of "cancer concerns," or lingering side effects.  My body, mind, and soul have been through so much over the last two years and I have been somewhat naive in thinking that I would be able to bounce back more quickly.

     Speed bump number one slowed me down right after all my major tests in August.  My blood work all came back with good numbers but a PET scan revealed  some over activity in the uterus---huh!  My oncologist suggested I had an additional MRI on the pelvic region.  He did not seem too concerned,  I on the other hand "freaked!"  

    I celebrated my 46th birthday in the tunnel with some anxiety for another few days, but luckily the results showed nothing, nada, zip!  I have got to learn to not let these things get to me so intensely.  Who knows what would show up inside any of us if we were tested, scanned, and x-rayed too frequently with high powered, sensitive equipment. A case of indigestion could show up as your long lost twin or a nasty tumor if we rely and dwell on all this technology too much and too often.  Does that make sense?

     Several weeks later I ran into speed bump number two. Called ONJ.  And what may you ask is that?  Well I asked the same question as I  began a monthly bone hardening infusion way back in December of 2008. A common part of MM treatment involves using a Bisphosphonate called Aredia or a Zometa to treat, fill in, or strengthen the bones which have been damaged by the cancer cells in the bone marrow.   ONJ stands for Osteonecrosis of the jaw.  I had read about this and questioned the oncologist about this side effect from Aredia.  He explained that it was very rare and I should not have to worry about it.  Well nearly two years later I'm worried about it!  

    I went to the Dentist about a month ago because I had a sore on my gum at the very back of my mouth that would not heal.  He took x-rays-couldn't see anything and referred me to a peridontist.  By my appt., a small piece of bone had broke through the gums and I was diagnosed with ONJ.  My elementary level of understanding of this means that the delicate balance of bone being built and then reabsorbed within the body is disturbed when long term use of bisphonsphonates are introduced.  The bone growth in my jaw is a result of that. The dangerous part of this is when infection enters the scene.  The bones of the jaw can become so infected that they die.  This can be very painful and disfiguring.  It is recommended that no heavy dental work or extractions be done for quite some time after taking Aredia.  The good thing for me is that I have had very little pain.  The bad thing is that I have a major cavity on my top back molar.  The easy thing to do would be to just pull that baby out, however that is not possible right now so-lucky me- I went in to an endodontist to have a root canal on wednesday.

     I hope I am not whinning too much or boring you with all the details, however I am letting you know that now might be a good time for a "commercial break."mmm.............

     Okay back to my story.  So things were going quite well.  I had prepped myself well. Brushed my teeth extra long, flossed twice, gargled mouthwash, and even watched a youtube video of the procedure.  I was ready when I sat in the chair and the Dr. seemed very kind and gentle as he explained what he was doing. 

      The time seemed to be going down fast when all of a sudden I felt like I was drowning.  My throat was stinging and with my my mouth propped wide open and stuffed with a rubber dam covering all of the teeth in my mouth, I motioned that I had to sit up RIGHT Now!!  The nurse quickly removed everything out of my mouth and I started bleeding out of my nose and coughing up blood.  This went on for a good twenty minutes.  They kept shooting  syringes of saline up the drilled out root canals into my sinus' to get the blood flow to stop.  This made me cough more and continue to bleed out of my nose.  Pretty graphic Huh?  It was disgusting.  The Dentist said he had only had this happen once before with a patient and he really did not have a reason why.  We looked at the x-rays and the root canals had come close but not entered the sinus.  So there was really not a clear explanation.  But you should have seen my face.  I was swollen up on one side like a big red balloon.  They nurse had injected about 2 cups of saline into the right sinus.  After several minutes of more coughing and ice packs the Dentist asked if I wanted to finish up the procedure that day.  Aaaa..Yes please!! I was not planning on coming back!  So ten minutes later, extra strength tylenol, ice packs in hand, $900 down, and I was out the door.  

     Once again I became the patient battling a rare cancer, a younger woman with an older man's disease, and the person with another rare side effect. The questions of "why me" have long faded away.  Now my questions seem to be about understanding my health, my body, and multiple myeloma.  It is a huge stretch for my chemically, chemo-treated mind. 

     Most of the time it is better to concentrate on all the good things, people, and blessings in my life.  I may not be driving a shiny red sports car down my highway of life.  My dusty, dented up body, or my "uniqueness"  or "rareness"   sometimes wears on me when I have to slow down over all these speed bumps,  but it also provides me with some cynical humor,  crazy adventures, and beautiful scenery along the way. 

(And p.s. next blog I promise to talk about my new puppy instead of root canals.)

MY GIFT

Dear Brother,

It has been four and half years since you left many loved ones on this earth. We miss you. Your tragic passing left many people in shock and grief. Three weeks after your death, I still couldn't pull myself out of despair.... and then ....you somehow.... sent me a gift.

I believe that you had a hand in bringing a little Pomeranian puppy into my life. Our dog Zeus came to us in a such an unusual way. It was beyond coincidences.

He was born the runt of a litter. The owners managed to sell all of the puppies except this one. A friend heard of the situation and offered to take the little dog thinking that he could give it to his grandchildren.

So he brought the feisty fur ball to his three petite, quiet, grand daughters. One day their mother came to my preschool to drop off her child. She showed the puppy to me and let me hold him. She explained that the girls liked the dog but that they were scared of him. He was a lively little thing. Jumping up on them, barking and demanding lots of attention. Her mild-mannered daughters were not enjoying the experience and she had decided the puppy needed a new home. She suggested that my family of boys would love this dog and offered to give it to us for free. After discussing it with the family that evening, we eagerly brought the puppy into our home and into our lives.

We brought him home, changed his name to Zeus to fit his big personality, and introduced him to our first dog, an Airedale Terrier named Zoey. They became fast friends.

This little bundle of energy brought new life and joy into our lives. I still did not connect you-my brother, with this little miracle until I came across some pictures one day. I found a picture of when we were young. You were holding the family dog-a Pomeranian. Then I also realized that you had given your wife and family a dog several years ago-a Pomeranian. I also heard that you had given your friend and his wife a pom. Were you trying to tell me something? I believe you were.

I truly believe you were somehow involved with the events which ultimately led to Zeus coming to our family. You sent this gift to me. To let me know you were there. To comfort me through the pain of your death.

Zeus has been the happy, furry, spoiled baby of the family. Often when I get up in the morning I can find one of the boys laying on the floor by Zeus petting their best friend before preparing for a new day. He loves to "sing" for daddy and get tummy rubs. Zeus is a fierce guard dog if only barking could scare away an intruder. There is something about the unconditional love of a dog that can bring healing and comfort to anyone. Did you know I would face bigger challenges in the future? Did you know that a diagnosis of cancer would shake up every part of my life? Did you know that the gift of a little furry dog would provide comfort to everyone in the family as we faced these challenges?

Yesterday we had to give Zeus back. He unexpectedly passed away. He had not been feeling well off and on for a few weeks. He still seemed happy and healthy so we were not too alarmed. Our family was shocked and devastated when we discovered his lifeless body. I, and my two youngest sons, laid on my bed and cried and talked for several hours. We reminisced about the good times we have had with our little dog and discussed the cycle of life. We talked about Heavenly Father's plan. We talked about how each of us whether it be people or dogs come to earth to gain a body. That when that body dies the spirit still lives on. That there will be a time when we will once again be reunited with those loved ones who have died. Death is a part of life and I'm grateful that my children have had the opportunity to learn these tough lessons with their pets before they experience them with people they love.

So my dear brother, I thank you once again for your gift. He taught us about discipline, responsibility, unconditional love and the plan of salvation. He gave us comfort and joy and the opportunity to love deeply and learn valuable life lessons.

We had to give Zeus back yesterday and our hope is that you may somehow watch over him until we may all be reunited again. Thank you my brother, until we meet again. I miss you. love your little sister, Kristine

I DON'T HAVE TIME FOR CANCER

I don't have time for cancer. 

(Actually my husband reminds me that I don't have active cancer-

it's in remission so I will re-phrase that... )   

  The treatments I am undergoing are terribly inconvenient right now.

I simply do not have time to be sick. 

 The lives of my children and the exciting things

 happening in my family distract me from

 dwelling on the incredibly steep mountain that I have been climbing

. 

The school projects, 

wrestling practices,

tournaments,  and 

School activities.

 

The family business,...

and plans for the future keep me too busy to dwell too much on the never-ending cycle of chemotherapy and fatigue, steroid bursts of energy followed by draining crashes, and exhausting side effects. 

  

  I used to feel sorry for myself that I had to get a rare 

cancer usually found in older men.  

That I had to deal with all of this while still raising a family.  

Now I am realizing that my situation actually  

helps me to fight harder,  

to strive to be an active part of my husband and children's lives, and to find joy in the simple day to day routines.  

   No matter how tired I am there are still people who need my attention and I need them.

So here is a peek at my life... as I look forward to some "peak" celebrations in my life!

Jace graduates from High School!                             Mallory is getting married in June!

and my son Tyler and his wife Dani are expecting their first baby..... and I am going to be a grandmother!!

I don't have time for cancer.  I am going through these treatments so I have time for life!

   

 

Taking it One Day at a Time

Everyday is an adventure. Will this be a good day when I have some energy and can function as a wife and mother? Or will this be a day to go easy on myself and strive to endure until things improve? I am in my 6th cycle of Chemo. Velcade, Dex and Thalidomide. Half way if I can stand it. I have been trying to track a pattern as to what days I can expect to feel good. It seems to be somewhat erratic lately. My Doctor thinks it might be my bodies reaction as I come off the steroid the days following chemo. I am going to try a gradual let down and approach and see if that might prevent the big crashes and pain I have been dealing with. Cross your fingers. The crashes are not fun! My husband has to convince me that I can do this when I start thinking about just quitting the rest of treatment. He reminds me to take it one day at a time. Wow have I got a lot to learn.. but cancer is a very patient teacher and my perspectives of many things have changed and deepened. So I am continuing to trudge along. Looking forward to improved health and appreciating the good things and wonderful people in my life.

CAT problems

Several weeks ago we had CAT problems! One evening after going to bed we heard a kitten crying outside the bedroom window. My husband went outside and looked for the kitten. He figured it must have ran off because the mewing had stopped. So we went to sleep til about 11:30pm when it started up again. Luckily my 17yr. old son had just come in and we asked him to see if he could find it. He went downstairs into the bathroom and opened up the window where the kitten was stuck in the window well. As soon as he reached to grab it, The scared kitten jumped out of his hands into the bathroom and down some duct work under the counter that did not have a vent cover on it. " Just great!" now we had a scared kitten running around in the duct work of our basement. My son put some food and water by the hole, shut the door and hoped it would come out in the night. Well it apparently did come out because some of the food was gone, but climbed back in the hole and wandered around-- for two days! We heard it "crying" in another area of the basement-- for two days! We never saw the cat but it did continue to come out for food and water and then quickly went back into the black hole--for two days! Some thing had to be done! The last thing we needed was a dead cat in the heat and duct work. It was time for an "official family meeting" to solve this problem. Several ideas were discussed. We laughed at some of the more outrageous ones. Everyone had an opinion. Finally this is what we came up with. After several attempts it finally worked! A rubbermaid container, a stick, and tuna fish....... And that- my friends- has nothing to do with cancer!!

Summer

Summer is quickly coming to an end and my children are ready to go back to school.  Mom hasn't been too entertaining these days.  But I am adjusting to this new phase of treatment and learning to plan my life around the good weeks and bad weeks.  

  We have been able to do a few fun things together.

We went to Salt Lake City and visited This is the Place Monument and Heritage Park.  We stayed at a nice Hotel, The kids swam three times, had dinner at a Thai restaurant-delicious! and went to a lazer show.  Then we went to a family reunion the next day.  It was nice and relaxing to be together.

Some "rare" birds

In June we went to Star Valley, Wyoming. My favorite place. Stayed at the family cabin.  There's beautiful scenery, fresh crisp air and lots of room for kids and dogs to run.