December 24, 2010

Christmas Reflections


The sacred and simple story of the Nativity outshines all of the glitter and glitz of the season. I testify that the miracle of the Christ child's birth and life can bring blessings, hope, and peace. May we all feel the impact of his life in ours as we celebrate this holiday season. Merry Christmas!!!

December 10, 2010

Nice and Normal

I know that tandem stem cell transplants and chemotherapy have saved my life... and I feel so blessed to live in a time when good medical treatments are available for this disease. I would most likely not be alive today without them. These medical advancements have ridden my body of any visible signs of myeloma, but they have also left much peripheral damage. A weakened body and immune system, some neuropathy, and the various side effects I have had to deal with............But what I really am trying to say is that..............

One of the miracles in this crazy life I have endured through all of this is to see and feel my body (as well as my mind and spirit) begin to heal. Isn’t it amazing and wonderful how the human body functions? How our bodies are generating new growth every minute? How my body can grow stronger everyday?

After over two years of transplants, transfusions, and treatments, I have finally begun to feel normal!!! I am getting some energy! I am going days without pain! I can wake up in the morning and have a normal day!! Cancer does not weigh on my mind every waking minute.

I can clean my house, play with my precious grandaughter, do laundry, run errands, and fix dinner all in the same day!!

I have always been thankful for the big, exciting, and eventful days. Those days to capture in pictures and scrapbooks... Graduations and weddings. Birthdays and the birth day of my Grandchild. I am so grateful for those. They have kept me going. They have given me steps and goals and notes on my calendar to look forward to.

And now my “life tutor”--cancer has taught me to appreciate the normal, ordinary days that build me and shape me and bless me.

November 25, 2010

Thankful Thursday #4


"My brothers and sisters, to express gratitude is gracious and honorable, to enact gratitude is generous and noble, but to live with gratitude ever in our hearts is to touch heaven." Pres. Thomas S. Monson

What are you thankful for?

November 18, 2010

Thankful Thursday#3




I'm thankful for yellow school buses, wide open spaces, dogs and cats, and chickens and fresh eggs.  Cows and horses in my country views. Living in a "smallish" town.  The four seasons that change just when you tire of one.  Holidays and Sundays afternoons. Family dinners. Busy boys.  A soft bed and a good nap.  The security of employment and insurance (but not the red tape and co-pays!) Homemade bread and simmering stew.  Fresh garden produce and sewing projects.   Family stories and the faith of my ancestors.  Multiple Myeloma specialists and the expertise of my local oncologist.  Kind and friendly nurses.  Lab techs with a light touch and little needles.  Modern medicine and "magical" technology.  My scriptures. A tank full of gas. Clean laundry and my washer and dryer.  My "to do list" all checked off at the end of the day.  People I care about. 
                 I hope I don't take the little things for granted.  I have so much to be grateful for.  May we all make a conscience effort to develop an attitude of gratitude.    

November 11, 2010

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.  

November 04, 2010

Thankful Thursday


      As promised from my last post- lets talk puppies!
This is Kirby a shihtzu my family gave me for my birthday. He is a happy, furry, puppy who soaks up any kind of attention.
       He is a great addition to our family.  Kirby and Zoey, our airedale terrier, have become bests friends.


And now introducing
    THANKFUL THURSDAY a great blog idea shared by Phil another mm blogger.  Every Thursday until Thanksgiving, I will be posting something I am thankful for.
    Today I want to share with you my gratitude for several friends in my life who have been the answer to my prayers over the last two years.  I am learning that many times the Lord answers our prayers through other people.  If a person is "in tune" they will act upon the promptings they feel.
  There has been several times when I have prayed for something and soon after I received a phone call or a visit from a friend who told me they felt prompted to check on me or see how I was doing. These always seem to happen when I need it most.
    Just yesterday I wasn't feeling very well.  Once again I am coming down with a cold.  It was after 6pm and I had not even thought about fixing dinner.  While I was resting, a friend dropped by with a dish of homemade tamales.  She knows my boys love them. Dinner problems solved!
 I am so blessed to have good friends in my life who not only bless me with their friendship but also act upon the promptings they receive and are truly an answer to my prayers.

October 23, 2010

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.)

September 08, 2010

The Miracle of Life

I touched heaven today.

I touched the tenderness, the purity, and the innocence in the soft skin, chubby cheeks, and wondering eyes of a baby fresh from heaven.

I witnessed the strongest bonds of all that exist.

The love of a family.

The love of a mother, a father, and a child.

A new chain connects generations into eternity. I am a link in that chain. I can connect generations into the past. My own parents and grandparents. I link the future with my son, his wife, and now with the precious gift of a child.

I am so filled with gratitude and humility for this gift that the world received today as another baby entered offering hope and pure love for the future.

And I became a grandmother.

I rejoice at this blessing a kind and loving Heavenly Father has given me. Allowing me to witness, hold, and cherish one of the countless miracles in my life.

P.S. It's a girl! One day old Tabitha

August 21, 2010

The Chemo party is Closed!!

Time to celebrate!
Thursday was my last "Chemo Party" for Hopefully a verrrrrrry lonnnnnnng timmmmme!
Like I explained in my last post, this has been

Almost two years of this grueling pace.

This life changing,

life preserving,

completely consuming journey.

I could not have done this without the expertise, and encouragement from the team at my oncologist's office.

Jamie and Kelly, the nurses have been wonderful. Not only are they skilled at what they do, but they have become friends throughout this journey.
We feel very fortunate to be in the care of Dr. Nathan Rich. He is my local oncologist. He works closely with the Multiple Myeloma specialist at Huntsman. He is very "down to earth" and takes his time to answer our questions and just visit. He has been my ally through this rigorous treatment. Really helping make the right decisions for me and weighing out the options. I have been having most of my infusions at his office and then meeting with the "MM bigwigs" in Salt Lake once a month. I really value his expertise, wisdom, and kindness.
I will continue to see him and receive Aredia-a bone hardening infusion every two months.
I am so grateful for the care I have received from these amazing people and the miracles of modern medicine!
p.s. and you asked how did I celebrate? I went home, ate cake and had a three hour nap.

August 17, 2010

Endings and Beginnings

A few pictures from the last few weeks
We went to a family reunion in Star Valley, Wyoming. It was wonderful! Seventy people attended for a weekend of horse rides, four-wheeler rides, games, crafts, good food, wonderful family, and a lot of time to relax, visit and enjoy. Having a baby shower for my daughter-in-law. Only three weeks left, but I think she will be earlier. We both feel nine months pregnant! We are both tired and full of anticipation for a new life!
And now for endings........

It’s day 15 cycle 12 of my treatment. This means I have one more shot of velcade-chemo on day 18 and then I am finished with this regimen!!!

That is 12 months of chemo! during this treatment cycle. Twenty-one months since diagnosis. Two autogulous stem cell transplants involving more chemo. For a grand total of twenty-one months of chemo. (More posts to come on this subject.)

Almost two years of this grueling pace.

This life changing,

life preserving,

completely consuming journey.

The beginnings.......

A few weeks ago a doctor asked if she could give my phone number to a woman who was just beginning this journey. I agreed but never did get a phone call from her. I spent some time thinking about what I would tell her. Wow where would I even start. How would I express all of what she would go through. How much could I tell her and what is better left unsaid.

What I knew for sure is that if I could do it she could do it.

Here are just a few of my thoughts.

Take it day by day.

Multiple Myeloma acts differently in every patient.

You will probably get extremely ill.

But it will get better.

Now I deal with extreme fatigue and pain.

Maybe you won’t.

You have to go easy on yourself and let the little things go.

Pray

The dishes will eventually get cleaned.

The floor will eventually get swept.

The cobwebs on the ceiling don’t hurt anybody.

The shower is a great place to cry and sometimes you just have to let it all out.

Try not to isolate yourself.

If you are feeling that way call someone up and ask about how they are doing.

Do something for someone else, thank-you cards, phone calls.

Pray

Nothing takes the place of the support of family and good friends

Many people will be scared of cancer and won’t know what to say or do. Try to understand that and go easy on them. This took me along time to understand.

Seek for spiritual guidance through study and attending your church as much as possible.

I am L.D.S. (The Church of Jesus Christ of Latter-Day Saints) and partaking of the Sacrament has become one thing that I try not to miss even if I don’t feel well. The words and meaning of the Sacrament prayer gives me great peace and takes away my pain.

Wow what a life altering journey you are beginning!

We are so blessed to having been diagnosed at this time. As recent as 7-8 years ago there were few options for treatment. Now there are many. With many new drugs in trials and genetic testing starting to be used to specialize treatment to each individual patient.

There is much hope of turning Multiple Myeloma from an incurable cancer to a chronic disease.

This is tough but you can do this! And there will come a day when cancer will not be on your mind every minute of every day. It is definitely still on mine but the frequency will decrease.

Try to look for the happy and simple things in life that bring you joy and cherish every minute of them.

To the woman I have never met who is taking the first steps up this mountain, I wish you the very best. May your transplant and treatment go easy and if not may you have the strength and courage to take another step each day. May you move this mountain by changing your perspective and view of this perilous steep journey as you climb higher; taking the time to get down on your knees and pray for divine help as you overcome the challenges of this climb. You will receive his help.

Please feel free to add your perspectives and comments to my post. So I can track down this new patient and share with her the wisdom of others on this journey and besides (I need to know if anyone is really out there:)

July 19, 2010

Reducing the symptoms of NPBG-Non-Posting Blogger Guilt

Here are couple of random pictures of my humanitarian trip to Peru. (I hate posting without a picture)
Kris kissing a llama for good-luck! Working at a village school in Matinga, Peru. the school shared one box of crayons. We painted and cleaned, brought needed school supplies and made many new friends.

My posts have become fewer and farther in between. I am finding that on the "good days" I don't make the time to write. I am too busy running around trying to get as much done as I can, and enjoy feeling good as much as I can. On the "bad days" which unfortunately come too often, it takes far too much energy to put down my thoughts on paper--er computer.

So in a gallant effort to actually post something I have decided to forgo writing down the actual posts that have been rolling around in my mind and just give you a clever title which I may or may not expand on in the future--Hey I make no major commitments while on this "roller coaster."

So here goes..

July 4, 2010 "Long naps,.... Short walks in the woods,........ A weekend with my family in Star Valley, Wyoming------Priceless!"

July 6, 2010 "Living with the Man of my Dreams" celebrating Twenty-six adventure filled years with my amazing husband.

July 15, 2010 "I have an eight-track mind without a rewind" My steroid-chemo induced mind games and the people who play them.

July 18, 2010 "My Three Sons" the adventures of a Myeloma-Mom and a Micro-Managing dad trying to keep it all together from a 12, 15, and 18 year old boy's perspective. Trust me this would be a short post.

Just imagine how great these posts would be. You laughed....You cried.... and you were inspired by my every word. Wow I feel a lot better now. How about you?

And now to erase all non-posting guilt, Here is the low down on what's been happening on my myeloma mountain climbing adventures.

I am in the middle of the 11th cycle Six weeks to go!!! If I can stand it. It is not getting any easier that's for sure. I started out last week feeling pretty good, but developed a bad cough and chest congestion by Wednesday. I spent three hours at Utah Valley Hospital getting checked out by Dr. Riches NP. After a blood test, oxygen level test, and a chest x-ray to rule out pneumonia, She decided that I had the beginnings of bronchitis. I was giving a high power, high dose antibiotic, my old friend Levaquin and sent on my way. She told me it was good I went in when I did because I need to stay healthy enough to receive chemo on Monday. (Is there something wrong with this picture?...I need to stay well so I can take a nasty poison that will make me sick) Oh well whatever it takes to get through this.

I continued to drain of energy but my cough has been getting better. By Saturday I was completely down, could barely get out of bed. I slept most of the day. Thanks to my husband for taking care of me and the kids. And then this "roller coaster" of a life changed directions and Sunday morning I felt much better. I was able to go to church and spent a great day with my family.

Everyday is an adventure one filled with highs and lows. My family and My Heavenly Father keeping me going and I am truly blessed by both.

June 30, 2010

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

June 24, 2010

In a Nutshell

I just happened to run across this the other day. Dr. Oz explains warning signs of five cancers. The fifth one is Multiple Myeloma. The club I belong to. Here it is "in a nutshell." Enjoy.
P. S. I can't figure out how to cut just the clip I want (anyone want to tell me how:).. so.. if you start at about 3.4 seconds that's where info on Multiple Myeloma starts.
F.Y.I I'm on cycle 10 day 18.
Which is my 4th round of chemo for this month. Two more months to go.
Two more cycles to go.
Nine more rounds of chemo to go
and then it will be time to start enjoying my remission!!
I'm starting to believe that light I see isn't the oncoming train but the light at the end of the tunnel.
Oh and another F.Y.I
I have not broken one bone during this journey so I am feeling pretty good about that.
... and I really need to go to bed but my friendly steroid is keeping my mind racing. Sometimes I fight it and try to sleep and sometimes I just ride the wave until it crashes - usually by the weekend when my energy level drains to almost nothing.
So Farewell and goodnight for now.

June 06, 2010

Time for Another Hike

My four sons, son-in-law, and daughter. Aren't they handsome....and beautiful?!
Our only daughter was married on June 3rd. It was such a wonderful celebration. She was married in the Salt Lake LDS temple. The ceremony was beautiful, simple, and sacred. We haven't felt like we were losing a daughter but that we are gaining a son.
It's been six weeks since my last round of chemo. A serious break after 18 months of treatment. After explaining to my doctor all of the upcoming events happening in May, he agreed to let me take time off of treatment. I was desperately hoping he would say that nine months of maintenance was plenty however that wasn't the case. He did say that we must always weigh out treatment with quality of life issues. Well I must say that "my quality of life" has needed some adjustment so it was wonderful to take a "breather" for six weeks!
It has taken a good month to shake off the fatigue and some of the "chemo brain." Just in the nick of time I have been able to enjoy some wonderful events with my family.
Now it's time to jump back on the chemo roller coaster. I head up to Huntsman on Monday to begin treatment. I will start with labs. They will be checking to make sure all systems are "go." Then the games begin. An IV with some saline, a quick push of Velcade(chemo) and a three hour infusion of Aredia-a bone hardening infusion. I will also start back up on Dexamethasone and a new drug called Revlimid. I am not looking forward to the next three months. It is so hard to start back. This time I know what I am getting into!
...so wish me luck, keep me in your prayers, and I will get back on my hiking boots and climb a little further up this mountain.

April 15, 2010

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!
   
 

March 22, 2010

8 down!!... but who's counting?

It's Spring today.  My grass is turning green and little purple crocus' are stretching out of my tired and neglected flower beds.  I just finished my eighth month of maintenance treatment.  The last dose of Velcade and Dex were four days ago.  It takes me so long to recover!  I can get up make breakfast,  straighten the house, get ready for the day and then I am completely exhausted.  
   Fatigue is a huge side effect of treatment.  It is entirely different than being tired.  I feel like I have been running a marathon, swimming the english channel or scaling the rocky cliffs of my "myeloma mountain."  I wish I could just take a good long nap and wake up refreshed and ready to go for jog.  Well I guess there are trade-offs.  Things could be much worse.   I have been fortunate to not have to deal too much with some much more unpleasant side effects such as nausea, or neuropathy.  So I guess I am just learning to live with it.  
    Four more months of this treatment-if I can stand it!  That's 16 rounds of chemo.  Thirty two days of steriod.  Probably one more IVIG infusion.  And around a hundred and twenty lovenox-blood thinner shots.  But who's counting.
p.s. my hair is growing and I actually used a blow dryer on it yesterday.
    

February 20, 2010

It's all in the Perspective

On my way to the hospital for my chemo and infusion parties, I drive past this sign.  It always makes me smile.
Are the Dog's bones smoked or the Bones for the dogs smoked???
I guess a lot of times how we view our experiences in life are determined by our perspective at that moment.  Going through this roller coaster of treatments over the last year and half  I have realized how huge cancer and the weapons used to fight it, affect the body, the mind, the spirit, and the emotions.  What you think affects how you feel, and what you feel physically affects how you think.  Your perspective has a huge impact on the rest of you. 
   Sometimes when I read the sign on the road, I just feel like stopping in for a tasty snack for my dogs.  At other times I can read the sign  and think of holding on to my dogs tight before they are caught by the mean butcher who is turning innocent dogs into tasty treats.  Okay it also makes me smile.
What I'm trying to say is all of us have challenges and experiences everyday that require us to react.  We can choose to limit our perspective to negative thoughts or we can choose to react with a positive attitude and find a way to learn from what we are experiencing.  
I am still learning. I have lots of practice and a long ways to go.  When I don't feel good this is tough.  Those are the times I can't think about the future, or my messy house, or what needs to be done on "My List."  Those are the times when I have to count my blessings and pray.  Thanking the Lord for my blessings and asking for an increase in courage and strength.  I always feel better.  No matter how I feel physically; I always feel better spiritually, mentally and emotionally after taking my burdens to the Lord and realizing the good in my life, and praying for others who are experiencing there own challenges and need the Lord's help.  It's amazing how that works.  It can change your perspective. 
  
Now I think my dogs need a tasty snack....mmm how about a smokey dog bone.
P.S.  Will someone please call and remind of this when I'm having a bad day?
One's first step in wisdom is to question everything - and one's last is to come to terms with everything.
Georg C. Lichtenburg

January 28, 2010

My Report Card

         Going on a "Dog Walk" with Trent and Spencer. (I walk they run)

Last week I went to Huntsman for tests.  Labs, a PET/CT scan and a bone marrow biopsy.  I must be getting better at this.  It all seemed very routine.  I felt little anxiety and even the biopsy was easier. I guess this is a good thing since I will be having these, hopefully at much longer intervals, for the rest of my life.   On Tuesday we met with Dr. Tricot to go over all the results.  

     

My numbers are good. I pour over the lab reports trying to understand what each of the results mean.  This is a huge and overwhelming task for me in my "Chemo foggy" brain.  but I guess it is a good mental exercise.  I borrowed some of the analogy's from several other cancer blogs.  (I hope they don't mind.)

Here are a few of the lab test results compared to when I was diagnosed.  I was sure one “sick puppy” when I was diagnosed.  It is amazing looking back that I was as sick and tired as I was and thought it was just from being a busy wife and mother.

 When a person has myeloma they have an unusually high number of plasma cells in the bone marrow.  These are completely different then the white plasma cells in the blood.  Somewhere along the line one of these plasma cells turned to the "dark side" and begin multiplying itself over and over and never dying like a normal cell.  In most people there are 1% to 2% plasma cells in the marrow.  At diagnosis I had 80% plasma cells!!  I even have some lovely pictures taken from the first biopsy magnified 1000X.   They were crowding out other good cells which produce immunoglobulins or proteins to help fight infections.  Because I had evil cancer cells lurking in my marrow they sent out way too much protein into the blood and that was the first red flag.  Now for the good news.  I now have 1% plasma cells!

The next myeloma marker is the Beta 2 Microglobulin.  This shows how advanced the disease is. You want it to be less than 3. At diagnosis mine was 4.4.  It is now 2.8mg/l.

Your total protein is made up of several specific types.  The myeloma is classified by one of these.  I have IgG. The normal range is between 600 - 1500. At diagnosis my IgG was 9,286 mg/dl!!  It was 164 in Oct. but bounced up to 850 this time.  I panicked when I saw this but the Dr. explained that this is because I have been getting IVIG infusions every month to boost my immunities through the winter and that this is nothing to worry about. wheww.

Hemoglobin is an iron level is important because mm can cause sever anemia.  Normal levels are 12 to 15.5)  If it goes below 9 then I have to get a blood infusion.  I haven’t had one for months. It was 11.5 this last time.  

The PET/CT scan reported lots of different findings which I don’t understand however I do see lots of “normal” findings. Yea!  At diagnosis there were hundreds of lytic lesions throughout the skeleton.  They now report no focal lesions and no sites of tumor involvement.  I continue to receive 

Aredia infusions once a month to harden and strengthen the bones. They must be working. 

Have I lost you yet?  Those are a few of the test results that I quickly wrote down while visiting with the Dr.  I will be getting the lab report in the mail in a few days.  

So the good news is I am in Complete Remission.  There is no signs of active cancer. But we have chosen not to just treat this rare cancer but to aggressively work towards curing it and for that I am now on maintenance treatment of Velcade, Thalidomide, and Dexamethasone for a year.  I am half way through.  It is grueling.  I feel like Bozo the clown punching bag.  I am just starting to stand upright and then someone comes along and punches me back down.  It’s quite the life.  But it’s my life and I have much to live for and so much to be thankful for.  

   

I have an amazing husband and family.  I find so much joy just being around the love and energy of a household full of active, involved, good children.  I have faith in God that this mountain I am on is part of God’s plan for me.  That this mountain under me moves as I continue to climb and overcome the obstacles in my path with help from God and the support of my family and friends.  I am blessed!

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