Thursday, June 30, 2011

Long Overdue Update . . .

This past few months has certainly presented me with challenges in regards to the therapy I am undergoing with the autoimmune disorder. The Chemo really takes me down and I find I am mostly in bed for the full four weeks I am on it. It makes me very weak and exhausted. My hair comes out by the handfuls every day in spite of my efforts to be careful. On the sides I was down to a few long strands on top covering a bit of fluff underneath and I had small hairs from breakage all over my head. Having such thick and coarse hair all of my life, this has been quite a shock to me. The new hair is white fluff like the down of a goose and it is very difficult to manage.

I am now completing my first Prednisone week for this round of treatment. As always, I start this part of the therapy with three days of infusion of 1000 mg of Solumedrol (IV Prednisone)in the infusion lab at the hospital. While on Chemo, I need weekly blood draws and labs. The best part of the Prednisone months is a break from all of that. I now am on 40 mg of Prednisone a day along with all of the other meds and necessary supplements. Can I just say I am so tired of taking pills? I change medications around the 21st of each month. The change over week from daily Prednisone to daily chemo is the toughest! Hopefully July 21st will be my last experience there!

It feels so good to be off of the Chemo for a bit. Melatonin has increased my ability to sleep in the night overcoming the wakefulness of the Prednisone therapy, and I actually have some energy. This is a real emotional boost as I am able to be up and doing! I sense the atrophy in my muscles (especially my legs) but the strength I have blesses me to be back into the joy of work and some accomplishment.

Our computer crashed last week loosing my completed address for Sunday. Claigh and I speak at a different congregation each month as a result of our church assignments. If we do our part, our Father Heaven sees us through and that is just what He did for me. I rose early Sunday morning and began again. A computer screen may go blank, the the sense of heart that fuels a testimony is ever there. The meeting lifted and inspired. Claigh's testimony was powerful. The youth speakers were well prepared - the music beautiful. Don't you just love the gospel of Jesus Christ?

Yesterday was a big day for me. - I had to face facts and have my hair cut very short. I sure do not like it and feel guilty for the sadness and loss I am experiencing. I miss myself. I miss people. I told Claigh that this is how I thought I would look at eighty. What would I do without his love and devotion through these difficulties? How could I manage without the sure knowledge of the love and mindfulness of my Heavenly Father and his Son Jesus? The Spirit guides me and inspires me to greater faith and testimony.

With my reemerging strength, I have spent two sessions in the yard planting flowers and cleaning up the beds. Last evening we started late as we went to purchase a camera for Claigh's birthday. (Ours broke the day before Alyssa's wedding. We decided not to wait for his August celebration of life as we want pictures of the grand kids coming for a visit soon.) Back to the yard. - It is suffering from my neglect but Claigh again has been wonderful. With all of his usual business and dealing with my situation, he has managed to keep things looking pretty good. That man is amazing!

The air was crisp and clean last night - the soil moist in my hands - the flowers in shock due to the fact that I hadn't watered them before I began my trek to the beauty parlor. I am in hopes they will make it but the reality of the final arrival of summer may make it a bit too hot for them. We also planted a Peony last week that is looking pretty wind beaten and so we will move it hopefully tonight. I miss my large flowerbeds in Virginia! Idaho Falls presents quite a challenge for my green, pink, red, yellow, white, purple, orange thumb :D Claigh and I didn't make it back into the house until 10:30 p.m. It was fantastic for me - perhaps a bit on the late side for Claigh!

As for treatment results? My protein dump has gone from over 18000 to just over 3000. Hooray!! And my cholesterol is down from 550 to 320. Dr. Haderlie is hopeful that we can discontinue the Prednisone/Chemo treatments the end of September. I am right there with him! The longest I will go will be until February.

Many have been supportive through this ordeal. Truly God does watch out for us through the prayers and kindnesses of others. Thank-you so very very much. Honestly, discouragement does get me at times but for the most part I have been keenly aware of the bounteous blessings in my good life. My heart cries out for those I know who are in much greater distress than I can even imagine. It is interesting that once again, guilt floods my soul when I consider the plight of others around me who suffer greatly for loss of health and loved ones. My situation has been difficult but I feel quite taken care of and nurtured through it all. I have been blessed beyond what I deserve.

1 comment:

Carey said...

I love you SO much Mama:) My heart is ready for a little time with you! Please know how precious you are to me!!!