July 7, 2008

July 1st 2008

Well, here is the latest update.

We met with Dr. Hajdenburg on Friday and learned a lot about Revlimid. It is a chemo, but I don’t loose my hair. It is oral and I will be on it for 21 days, off for 7, on for 21 days and off for 7 and continue like that for 3 months. They also have me on a steroid and an aspirin every day because the Revlimid can cause blood clots (deep vein thrombosis). The steroid is only once a week. I should begin that regimen on July 14th. Side effects seem to be minimal; fatigue, diarrhea, and constipation. Hopefully, they really will be minimal. They will check my blood every week for eight weeks to make sure the white blood cells and red blood cells are the right amount. (CBC) Then we will go to once a month. Further down the road, he plans to send me to Moffitt in Tampa. He wants to see about taking my own stem cells and “banking” them for more aggressive treatment later, should I need it. As explained to us, I have stage I multiple myeloma. Stage I begins at 10% and goes to 30% of my bone marrow involvement. I was at 11% when they did the bone marrow biopsy in the hospital so I am barely at stage I. Good news for me. Thank you God. People that are at 50% usually begin an aggressive chemo treatment and also work with the stem cell treatments. With this cancer, the more cancer cells that are removed/eliminated the better. That is not always the case with every cancer…..so we learned. I will also have scans taken every 2-3 months.

I am walking around the house without the walker or anything. So, my balance is getting better, but not the sensation. I can’t really tell any difference in that so please pray that it will come back soon. I get my brace off August 1st.

Dr. Hajdenburg also cleared me for the pool. So, Saturday I was in the pool for 2 ½ hours. Yeah, I overdid it, so Sunday it was only an hour and a half. I practiced kicking which is really exhausting, so, I do it as much as I can. I wear the brace they sent me home with for the shower, so I am still able to follow Dr. Burry’s instructions for wearing a brace when I am ambulatory.

I was able to get into a physical therapy facility on Slighe Blvd. that is a self pay not associated with the hospital. My therapist is Teresa and I see her once a month, typically on a Thursday. She gave me several exercises to do in the pool which I really enjoy. I work out on the Wii Fit for about 25 minutes a day and then do my floor (bed) exercises which I have now added ankle weights to (per Teresa), when I don’t do the exercises in the pool.


Ron and I are working on putting things on Ebay for school and I am also starting up my scrapbooking again. It is good for me to have a plan for the day and to feel productive so that I am actually accomplishing something.

I expect a lot from myself and forget that I am not only battling cancer, but recovery from back surgery and paralysis. So, keep Ron and I on the top of your prayer list. Ron has a lot on his plate just being my rock, let alone a father, bread winner, head of household and all the responsibilities he has running sound at the church, and keeping up with all the insurance issues. My prayer request would be to walk in untroubled trust that God has my best interest in mind, and His kingdom to expand. That I would rest knowing He is in control and I will make it through and be used by Him to glorify His name. Simply reading about multiple myeloma can be terrifying because your mortality smacks you in the face. This new “language” we are speaking is unwanted and also terrifying, yet God’s peace is there, waiting to be grasped. I was reading in Exodus, when Moses was called by God to Mt. Sinai to get all the instructions for the Israelites. The mountain shook, there was thunder and darkness……and God spoke out of the darkness. He spoke out of the darkness………therefore He was IN the darkness. That gave me such comfort, knowing He is in the darkness, MY darkness, still in control, still in charge, still His plan, not surprised.

We thank you for praying. Never stop.

Love,
Ron and Jenny