Dancin' in the Rain

My blood cell counts are improving daily.  We just don’t know if the cells are my cells recovering ( boo) or if they are my wonderful donor cells ( yea).

I do know that the cyclosporin has fatigued me to tears and is the cause of my morning nausea.  That makes life more understandable, but not much more tolerable.  That’s not true, I am forced to rest and rest and rest.

I barely have enough energy to fart and I say that in a kind way because my dear friends, Don and Cindie, remind me I will return to the days of being a fart on a hot skillet. ( their loving way to describe my exuberance for activity).

On Wednesday, May 19, 28 days since the stem cell transplant, I will be tested inside and out for my donor versus host activity.   Let’s all cheer for the donor cells!  They will then decrease my cyclosporin, so less fatigue and nausea I hope and decrease  office visits to 2 or 1 day a week.   I can handle all that easily.  I am so fortunate I have no other symptoms, yet, related to graft versus host disease.  I have to watch out at least  to day 100.

This is my paradise for now.

This is my favorite place right now.  My lilacs are in bloom.  Smell them? There is a light breeze with the birds twittering and flying from tree to tree. Paradise.

hugs, bugs, and angel gowns

What do these three things have in common?  Security and comfort, compassion and love.

The hug is the larger velour wrap with mittens on each end is for primary and high school age patients in hospitals.  The saying posted below says it all.

The smaller pastel tube is is a bug.  It ranges from 10-12 ” long.  The nurses at local hospitals wrap it around the feet of the premature babies in incubators.  The nurses are limited in how much they can touch the preemies and as they kick, they feel the restriction and warmth of the bug and provides security and love for them.

The ‘Angel gowns’ are for premature babies of drug moms or babies with other limiting disabilities and their life expectancy is short.  Many families can afford to buy a special outfit for photos and memories of their loved angel, but many cannot. These are provided to such mothers and families to have pictures taken and take home forever memories of their gone loved one.

These are service project ideas from Deseret Industries in South Jordan and passed to me by my sweet friend Ruthie. We will be making the hugs and bugs in our relief society meetings.  I am making the ‘angel gowns’ for now.  It like sewing doll clothes and often difficult to manipulate such tiny pieces of fabric. If any of you are interested in these projects  or can help with the ‘angel gowns’, just let me know.

All the finished items are returned to the Distribution Center for distribution to all local interested hospitals.  They go home with the patient so there is a never ending need for them.  There is a little note on the hug as follows:

This cuddly Wrap is Known as a Hug.

When you wrap it around you, you will feel comfy and snug.

You can use it when you are angry, when you feel hurt or sad.  You can use when you are lonely, when you are happy and glad.

But more than any or all of the above, when you put it around you, you’ll know you are LOVED.

Petals and perfection

To all my friends who are mothers, have a mother, sisters, aunts, nieces, grandmothers and are just my friends. You are all so special.

I see your compassion, empathy, fun loving spirits, tears of joy, tears of frustration, strong influence on family and friends and community, preciousness in the heart of our Heavenly Father.

This white rose represents the perfection we strive everyday to reach, knowing it is just beyond our reach. Keep stretching.

The string of white pearls represent how precious and connected we are to everyone who know us. Remind yourself daily how special you are and there is something unique in each one of us. Just like each pearl has a different appearance, so do we. Embrace and love those differences. Magnify that uniqueness.

To you all, I love you for who you are.

I love this picture.  I love the bright colors and the motion I feel when I look at it.  I love the sun shining on me ( ok. I am ready for spring or even summer at this speed) and I  love the dancing feet.  The picture makes me feel energized and hopeful.  Note that the picture is called ” Dancing with the Sun”  I know my friend Eva will like that.  It reminds my  of the sun worshiping the Swedes enjoy after a long winter.

Well, I’m sleeping better, have the nausea under control and feel like things are improving slowly. I still feel weak  and fatigued, but I have plenty of time to take care of that.  I love reading, but I have turned to movies for the most part now, since I tend to doze off when I read!  But I have plenty of both books and movies to keep me busy for now.

Another cold night, possible snow showers on the benches.  I bought my tomato plant, red geraniums, and shasta daisies.  We are warned not to plant till after Mother’s day, but I don’t know if that’ll even be possible. I have covered them for the night in case it freezes overnight. Warming up for the weekend, so maybe we will permanently warm up.

So I shiver in my slippers and wait patiently.  Seems to be the story of my life for now.  Slowing down has been good for me.  I choose activities that have eternal perspective and not to just keep busy ( at which I am very good.)

I was all ready for a platelet transfusion this morning and those little guys increased in count. so, not yet.  Wbc and rbc’s pretty stable.  So I’m looking good for now.

The physician’s assistant gave me  my drug reduction chart starting at 6 months and weened off my anti-rejection meds by one year.  I’ll believe it when I see it.

But, it does give me hope this too shall pass.

Curg and Darlene “I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly.”

Jannae  “What lies behind you and what lies in front of you, pales in comparison to what lies inside you”

Eva Daven “We´re all small creatures in this amazing universe, the sun always there, and them birdies and the strong mountains and ….you and your loving family.

Ruthie “joy in the journey”

What other favorite words bring comfort to you?

Today is the Relay for Life that my son,Greg, and his team have been working so long and hard to accomplish.  Many of you have supported him and I thank you from the bottom of my heart and all those who also are suffering from this insidious disease, cancer.

According to the American Cancer Society, ” the Relay for Life unites communities across the country to celebrate the lives of those who have battled cancer, remember loved ones lost, and fight back against a disease that takes too much.

We are committed to helping people get well, stay well, find cures, and fight back against cancer. The monetary support you provide is invested wisely. Learn more about how your donation helps save lives in California.”

Me and Greg in his Spartan visor, hospital 3/27/2010

For more information and Greg’s motivation, please go to American Cancer Society Relay for Life and his Facebook page . To see a really cool web page for the auction he and his team are doing in conjunction with the race, click on auction.  ( That is a plug for his home based web building business.)

I’m proud of his efforts on behalf of cancer and it’s sister disease leukemia.  He used this picture on his facebook page to honor me, but read on and see how many people cancer has touched. P.S. my hair is slowly growing back.  It’s about 1/2 “

Cool name, miserable symptoms. This is a condition that I had as part of my connective tissue disease ( i.e. autoimmune disease) before I ever got MDS.

cotton blossom

Well, it has gotten worse with the chemotherapy.  It is called  Sjogrens syndrome. With my second set of chemo prep for the transplant, it has become awful.  So I found special dry mouth toothpaste and mouth rinse that will help protect my teeth.  I didn’t know that the saliva has bacteria killing enzymes and with out it the bacteria can play havoc with my teeth and mouth lining.

So, my job is to keep my mouth moist. Chewing gum, drinking, swishing, mouth rinse etc.  It’s hard to keep up with it.

Just one of those unexpected trivialities!

I had my real birthday a few weeks ago.  But, the transplant team dedicates this day to a new birthday. I’m for it.

Mango Raspberry Torte

I got my yummy birthday pastry on my real birthday.  Back to out favorite pastry shop on one of my doctor visits and picked it out.  The first piece begged to be eaten.  It was a mango-raspberry cream torte.  Highly recommended by me.

I already planned my new birthday treat! Gelato. Off to our favorite gelato sandwich cafe.  I ordered a large cup of chocolate bonbon, pink grapefruit and orange and peach yougurt.  Indescribably delicious.

Peach Pastry aka baby bottoms

Peter brought these pastries to us  from our favorite pastry shop. They are a sweet pastry like a cream puff, only more dense, filled with yummy cream. The pastry is soaked lightly in a delicate fruit juice. Then they are sprinkled with sugar for a fuzzy look and decorated with marzipan leaves and candied orange stem.  Yummy.

They remind me of my hair growing back.

Kerstin shaved my head when the hair was coming out in gobs in my comb.  It was laying on my pillow and bed and I didn’t want to inhale it the next morning or have it for breakfast.

I never did get the desired shiny bald head.  The razor left a little fuzz that I expected to fall out.  Later, after I asked, I discovered that all my hair might not fall out because of the dose of chemo I received. So, I have this beard on my head which is now progressing to grow.

I’ve discovered that my hats are too warm, at least while the temps are in the upper 70′s.  But, the wigs and my saucy straw hat with a scarf are ok.  I like feeling normal in the wig, but I also have no problem going ‘au natural.’  The air on my fuzzy head feels refreshing.

Peter is anxious to have my hair grow back.  He hits me on the head like the 3 Stooges hit Curly.  Ouch!  I like my head to be petted nicely like a puppy.

Now, for some trivial information.  I stopped shaving my legs Feb. 26 when I went into the hospital.  After waiting until April 18, when I started the new regimen, I noticed the hairs were really very long.  So, like my head, I did not loose all my hair or my eyebrows.  So, I shaved, and will wait to see if the radiation ( low dose) affects my head or legs.

Another piece of trivia.  Guys with short hair are lucky.  One swipe of a wash cloth and the head is dry.  I love not having bad hair days!  Also, I wonder how much energy I’m saving by not having to wash and dry one less towel which I had for my head?

Tape method of removing hair

One last bit of trivia.  A nurse recommended I use tape on my head to remove the straggling hair that would eventually fall out of the follicles. It wasn’t as bad as when I waxed my legs and removed the wax, but it looked similar! I tried to make a tic-tac-toe shape, but it didn’t work.   I had too much fuzz left, so I gave up after a few trys.

So what do I want to remember from this experience?  I expected the ‘worst’ and received ‘not so bad.’  My dancing in the journey has been mostly rock and rollin’, with a few very slow waltz turns.  Today is my rest day and I’m feeling tired and a little weepy.  Fear, what if, don’t know, reaching with faith in my heart and hope in my soul.  Maybe I need my handkerchief.  I’ll do the cuddle curly dance on my comfy chair with a good book.   I’m sure there is a fancy dance to fit my future.