Digress -- Word for the Day -- Monday, August 18, 2008

Digress
DEFINITION: (verb) to wander from the main path or the main topic.

Digress should have been the very first word we (I) used at the beginning, because you can attest by my writings that I am prone to do just that! ha

WBC today -- 2.57 (2.0 is low); Platelets 172 (20 is a worry stage, but 150-500 is range).

ChemoSabe had a very, very long day. He was at UAMS by 8:30 for labs and fluids. Surprisingly, he did not have to have blood today. He got out of there by noon and was late for a Data Manager meeting. What is that? We have been wondering just that the last two weeks. We missed our last appointment. Are you ready for this one?

Data Manager is someone that will ask you for your notebook. The notebook they gave us in the beginning with a lot of medical tabs. I had already made my own with tabs for labs, appointments, contacts, Schema, etc. Well, they want you to give them ALL the notes you have taken from the beginning along with the medication lists with dates, quantities, etc. Your 'Diary'. They want you to copy it for them. Oh my gosh, my binder is humongous!!! Well, I am not copying it for them as I am too busy with my job. ChemoSabe told them he would bring our notebook, BUT do I want to part with my original? I think I will just jot down our blog address and give it to them! Wanna dare me?

I see a very tired man today. I did not go with him as I needed to work. Monday is my busiest day, BUT I had told him if he felt bad I would take off. He trudged on up there alone and I met him at 2:30 for the 3:00 p.m. appointment. He was able to eat lunch. He has felt nauseated since late yesterday afternoon. The nurses and I have told him the only thing that will help is Ativan. If you remember, that is also a sleep aid medication. He cannot drive while taking that. So, he has decided not to take it.

I have noticed the last few weeks his hands shaking. Sometimes it is best to observe and keep silent. Before the doctor came in, ChemoSabe was trying to explain to me his unusual feelings. He explained one symptom as jitters. When we talked more we agreed it was more of shakiness. The doctor informs us it is normal and is a combination of the steroids last week and the Melphalan (the massive chemo injection).

We had a different doctor this time. We REALLY like him. He physically checked ChemoSabe from head to toe. We have not had that before in clinic. He was very informative about what we had already endured, where we are and where we are headed. I will give you a brief run down.

ChemoSabe has no indication of Multiple Myeloma in his system! He has no Protein, meaning he has nothing in his organs and didn't from the get go. The only evidence of MM is the lesions which only one has diminished in size. The lesions are eaten out areas in the bone which will have to heal through more chemo therapy and transplants.

The next step -- He will still be going for labs every day for the next two to three weeks. His WBC will be dropping massively this week, beginning tomorrow. He will be in the mask (white -- no black available) stage and cannot touch anyone or just about anything. He will be HIGHLY susceptible to infection. This is a critical time.

We will see the doctor again next Monday for an overview and another schedule. The second required stem cell transplant will be within a six week to six month time frame. They are focusing on an eight week schedule. The doc tells us that Myeloma is very tricky. It plays games thinking it is smarter than medicine. It will be thinking the patient wants to wait as long as possible because the first transplant has drained the body. But, UAMS thinks aggressively so they want to go back as quickly as possible and do the second transplant. So, we are thinking the second will be around the last week of October.

Please pray for ChemoSabe this week for his strength, encouragement, endurance and the nausea.

He looks so vulnerable as he sleeps in the recliner. He looks so drained. AND, with that bald head and perfect skin, he looks so much like a baby. I did feel what I thought was stubble this morning. He laughed and said, "Get outta here", when I told him he needed to shave. He has not shaved in six weeks. Hasn't needed to. His eyebrows are almost gone completely and I believe some of his eyelashes are missing.

Please pray for me as I continue to see the changes in him physically and mentally, because I sure miss Poppy. I miss seeing him, touching him and smelling him as the treatments, especially the chemo, has taken a lot of that from him and from me.

And, please continue to pray for our other MM friends. I heard from Rog today, from OKC and they got back yesterday. He is due for heart catherization on the 20th and his stem cell transplant on the 25th. And, Billy, keeps on truckin'.

Oh, don't you think I did well? I did not digress much on this one!

Good night and Love -- Pepper