Saturday, December 26, 2009

Hanging on by My Fingernails

That's what I'm beginning to feel like. Since this is an MS blog I will tell you about my MS first, then I will move on to other things.

My next Tysabri infusion is scheduled for Wednesday, December 30. During the past week and a half, most of my symptoms have come back. My tremors were down to just a slight shaking of my head, and now they are full-body tremors once more. My arms are weak again like they were before my 1st treatment. However, I'm still walking without walking aids--except, of course, Montana. My balance isn't perfect, but I haven't fallen in quite some time now.

I had an EMG nerve conduction study done on my left arm, because the two last fingers on my left hand are totally numb and useless, my hand is very clumsy and doesn't work right. The neuro (who is leaving and moving to northern Virginia at the end of this month) has given me a referral to an orthopedic hand specialist. I have either a trapped nerve in my elbow region or a lesion. That will probably involve surgery, but that is definitely going on hold until we get Arnie taken care of.

We just got back from a nice walk. The streets are clear, but there are still very high piles of snow from the snow plows, and most of the snow that hit a week ago last Friday hasn't melted. Our stree has become a major street, with delivery trucks and 18-wheelers going awfully fast up and down it. Luckily, I'm friends with a woman who lives up by the golfcourse, which is a five minute drive from our house. She has told me to park in their circular driveway any time we take a walk and to walk in her neighborhood, which has a very small amount of traffic--and almost everyone drives slower there. I can't begin to tell you the feelings I get to be able to join in the walk with Arnie and Montana!

My dear husband is halfway through his chemotherapy. His symptoms are diminishing daily, which is quite a relief for both of us. He still has the cough, but it's much better. We'll just have to see how he does Monday after a 4-day rest from the shots due to the Christmas holiday. He is 85% sure that he will finish this round. After we get the results January 18, we will have to make some major decisions. I love him. He is my best friend and lover, and we've been married for 21 years; however, if he decides on no more therapy I will be behind this decision. So, we shall see. Because of the cancer returning so quickly, our son Scott and his family have decided to move back to the States from South Africa. That is a very good thing, as they've lived in Africa for three years now and we miss them like crazy. The picture I've posted is Lenny, our dear daughter-in-law and Scott, our son, Albert and Alex, our 6-year-old and 10-year-old grandsons.

We had two scares with Montana in the past three weeks. The first was a pinched nerve in his back, which was treated with pain pills, muscle relaxers, massage, and warm heat to the area. Then, he began vomiting every day. I called his trainer who said it sounded like Empty Belly Syndrome, which is when the dog's stomach is empty and begins to fill with bile, which makes them throw up. After increasing his food some, adding protein to his snacks, and giving him a handfull of kibble at night before bedtime, it cleared up.

So I am holding on by my fingernails, hoping and praying that things get better and that the chemo works.

Wednesday, December 9, 2009

Tysabri #3

I have a lot to write about this week.

First, my last Tysabri infusion was December 1. That evening, I noticed that my balance had improved somewhat. I was no longer running into walls and doorways. As of today, my balance is as good as it was five years ago--that's when it began to get bad. Three days ago, I took my first walk with my husband and Montana. That made both of us very happy; we had grins on our faces. It wasn't easy, and halfway through the walk my legs got shaky, but that's because my legs are weak. A walk with Montana and Arnie has been a dream of mine since he came to live with us.

My tremors have also improved. However, we don't know if it's because my neuro adjusted my Klonopin dose or if it's because of the TY.

I have energy again. Instead of sitting like a big lump in my chair, I'm able to get up and do things around the house.

Second, Arnie had a CT scan and he now has cancer in his lungs. The oncologist said that it probably has been there for a year (he had his kidney removed in January due to cancerous tumors), and that the cells traveled through his bloodstream from his kidney to his lungs. However, it took them awile to get large enough to be picked up on CT scanning. Monday, he began chemotherapy. It's called IL-2, and it's given by injection five days a week for six weeks. Then, they will take another CT scan. This only works in 15% of the patients with cancer like his. If it doesn't work, then we will go to a large teaching/research hospital, either in Charlottesville, VA, Raleigh-Durham, or Winston-Salem, NC. We want the best, and we're afrad that the small hospital here in Salem can't give him the best. I think he's going to be one of the 15% that this works on--I've got to think that, because the alternative is not good.

Third, we went to New Jersey for Thanksgiving, and we had a marvelous time. Our son, DIL, and two grandsons were able to fly in from LA to be with us, and that made it even more special. The picture I've posted is Aaron, Arnie, and Montana in Ocean City, NJ (my favorite place to be).