Feeling Better

I was beginning to believe that my MS was going to stay at the lower level it was after all the steroids infused and taken. However, I am slowly getting back to my baseline.

My balance is still off, but home physical therapy is working on that. And, I'm faithfully doing my exercises.

My friend Julie, whom I've known since 1st grade, is coming for a visit Sept 19. She will be here for a week. Arnie will be on his 2-week Sutent break by then, and hopefully will be free of all of his symptoms. We plan on taking Julie up to Lexington by way of the Blue Ridge Parkway, which is an awesome drive. Rest and relaxation is top on the list.

October, we're going to NJ to visit my BIL and SIL. The four of us are going to rent a limo and go to New York City and to Brooklyn to see the kids and grandkids. NYC is top on my Bucket List. For $500, which we'll split, we get a limo and driver for 15 hours. Talk about traveling in style! We were worried about taking Montana on the train, then Rocky came up with this idea. Can't wait!!

November, my friend from Tucson is coming for a week. Gabrielle is interested in the Civil War, so Arnie has planned a 2-night trip to the Fredericksburg area for us. He's hiring a private guide to take him and Gabrielle around (I'm staying at the hotel with Montana--not a buff). But, there will be lots for me to see when they return. I haven't seen my friend in six years, but we talk on the phone every Sunday. Can hardly wait to see her!

Went Downhill and Can't Get Back Up

I beginning to believe that my MS took a turn for the worse and I'm afraid that I'm not coming out of it. I had a 3-day course of IVSM the beginning of August. The following week, I had my 12th Tysabri infusion. The following week I had another course of IVSM, and now I'm in the middle of a 2-week Prednisone taper. My tremors, balance, leg weakness and fatigue are all bad.

Through Gentiva, the home health organization, I am now receiving home PT. Their plan is called Safe Strides, and it has to do with balance between your legs, feet, ears and eyes. Tuesday, I had a 2-hour assessment with my PT. Today, she is going to begin working with me. I will have two sessions a week for eight weeks, then I'll be reassessed.

I also will be starting back with my Yoga class next Thursday. We took a break during the summer, and are hoping that we have enough people show up Thursday to make a class. I've taken the MS Yoga for over a year now, and I think it is remarkable. Although, whereas Monty could help me get up off of the floor after relaxation, my legs are too week now to be able to do that. I'm going to need him and another person in class to help me up.

I'm thinking seriously about getting a small scooter that comes apart and will fit in the trunk. I want it mostly for around the house, though. I'm now using my Rollator to get around the house, but I still fall, even with the Rollator. I figure a scooter will be a help and not a step backward.

One good thing, the Celexa is working and my mood is pretty even. I haven't had crying jags or gotten mad at anyone.

We had our son, daughter-in-law, and two grandsons here for a long weekend. Things got a little hectic, as the two neighbor kids came over every afternoon to play, eat, and have fun. A couple of times, the noise and commotion got to be too much for Monty. Every once in awhile, he would go off and lay in the hallway or the kitchen. We had a wonderful time talking, laughing, and playing. They've moved from South Africa to Brooklyn, NY. They took the train from Brooklyn to Lynchburg (a little over an hour from where we live), and we picked them up at the train station. We have plans to meet them in New York City in October, and they want to come to Salem again in December. It is so very good to have them here!

Incompetent People Rant

We have had a very busy, but frustrating week.

First off, I was to begin home physical therapy yesterday (Friday) morning. Thursday, I got a call from the therapist telling me that they were still awaiting approval from my neuro for physical therapy. I told her it was my impression that his office had sent in all the needed paperwork. She replied that they sent the orders for evaluation (which was done), but that they were waiting on orders for the therapy itself before they could begin. I told her to come out Tuesday, that I was almost positive the office would get the paperwork to her company by then.

My DH was to receive a shipment of two bottles of Sutent, the drug that he is supposed to be taking for his Stage IV metastatic renal cancer. He called the drug manufacturer, who is supplying the drug to him, Thursday. He was told that the woman taking care of the prescriptions cancelled the 50 mg prescript like she was supposed to do, but failed to turn in the two lower dose prescriptions. The person he spoke to said that they could mail the pills out Friday, and that he would receive them Monday or Tuesday. He mentioned that he was supposed to start the pills last Tuesday, so that would be an entire week wasted. So, they shipped them Friday overnight, and the package arrived early this morning.

I, and probably the rest of you, are receiving slip-shod help from a lot of the work force nowadays. It is pathetic, worrisome, and just plain makes me spitting mad. It seems that a lot of people out there don't care about doing their jobs correctly. You would think that in today's economy, people would do their jobs like they're supposed to do them in order to keep them. I don't know. What's your opinion?

SoluMedrol and Home PT

First of all, I had a 3-day course of IV SoluMedrol last week because my MS was getting worse. It helped with my energy level and a little bit with leg weakness. The RN used something called a Mediball. It was the neatest thing. The solution is in a small ball, which is pressurized to deliver the medicine over a 1-hour period. The beauty is, you can stick it in your pocket and walk around--you are not attached to a pole IV set-up.

While the RN was here, she mentioned that I could get Physical Therapy through their company (Gentiva) to help me with my balance and walking. This morning, a physical therapist came out and gave me an assessment. She will be coming twice a week for four weeks, giving me tips and exercises to do on my own. Then, the company has something called Safe Strides. This is a program that works with your eyes, your ears and your body, to help you walk and stand better.

I have a good feeling about this. I've been falling more often, and running into walls and doorways. Of course, the tremors don't help my walking any.

I feel like a real mess!

Because of stress and the hot weather we've been having, I had an MS flare and I was getting depressed--crying, feeling very sad, and getting angry. My PCP started me on Celexa, which actually is doing a very fine job leveling out my mood. The only side effect I've gotten is dry mouth, which is no big deal.

Tysabri and SoluMedrol, and My Husband's Cancer

Things haven't been going good here at my house. The Tysabri was holding me steady at my baseline (poor, but liveable). But, I've been under a lot of stress and we were in an awful heat wave for two weeks. I guess those two combined gave me an MS flare. Everything got worse.

I called my neuro, who ordered a 3-day course of IV steroids. My veins are becoming scarred and they roll and are very hard to infiltrate. Home health came, and the nurse tried one arm and the vein blew. She told me that she only allows herself two sticks before she calls in another nurse. That's the way the nurses are at my infusion center. Luckily, she got the port in my left arm and it stayed. They use these things called medicine balls. They are wonderful. The ball is pressurized to deliver SM over a one-hour time period. They're small, and you can even put it in your pocket and walk around with it. However, there was no time to do that, as the nurse had to ask me 1,000 questions. She was super nice, though.

My DH was started on a new cancer fighting drug. The side effects are bad and there are many. After the 10th pill of a 28 pill cycle, he had fatigue to where he could barely walk and shortness of breath. He's sleepy but can't sleep. He's hungry but can't eat much.He's having diarrhea, mouth ulcers, and chills. Friday, I told him to stop taking the pills and call the oncology nurse Monday. He called, she talked to the doctor, and then she called back and told him to stop the medicine for one week. They will probably put him on a lower dose, 20.5 mg I think. She did mention that some people get the side effects, even on the lowest dose. Sutent is what it's called, and it restricts the growth of blood vessels, hopefully shrinking the lung tumors. There are two more chemo drugs for his disease, then that's it. Unfortunately, his type of cancer is incurable. They can only hope to control it for a time. But if his quality of life is as bad as it was Friday, he may elect to discontinue all chemotherapy and take his chances, living a better life for as long as possible. I'm behind any desicions he makes. I would do the same if it was me going through this hell.

We had my BIL and SIL here for the weekend, and we had a wonderful time with them. By Sunday, DH was feeling better. Yesterday was better still. Oh, the worst symptom with this drug is what they call hand and foot syndrome. The skin on your hands and feet begins to break down and you develop tears, cracks and ulcers, to where you can't walk. That usually happens in the fourth week. You get two weeks off, then they repeat the cycle.

MRI, Tysabri, and Demo

I had an MRI scan done this past Monday and the results were "no change", which is good. However, something is wrong with my veins. Now, whenever I get an IV, they have a very hard time putting one in. It felt like she was digging with an ice pick with the IV contrast needle. I should have said something, but I didn't. My head shakes so badly, even taking two extra Klonopin, that they have to put these big, thick pads over my ears before they put my head in the "helmet". It works, though. I also asked for earplugs, and nurse ice pick said I shouldn't need earplugs with the pads. I told her that I still wanted them, so she huffed off to get some. Needless to say, she wasn't the nicest person I've had the pleasure of encountering!!

Friday, I had my Tysabri infusion. I told my nurse about the ice pick nurse, and she said that I should have nicely requested that she try another vein instead of digging around in one spot. Since I'm there for nearly three hours, I told Arnie to take Monty home, and that I would call him when I was ready to go. We live five minutes from the infusion center. Anyway, when they got home, Arnie said that after he took off Monty's leash and vest and got him a drink of water that Monty went and laid in the hallway outside my bedroom and wouldn't budge from there until it was time to pick me up. Guess I'll let him stay with me from now on.

My husband and I are Reform Jews. I mention this because I got a call from a friend who works at the Temple where we are members. They were having summer camp, and she asked if I would do a demo for them. This was last Wednesday. There were 30 kids, ages 3-1/2 to 11. The demo went real well, except that I forgot the slices of string cheese that Monty will do just about anything for, and which I use during demonstrations. At one point, I had him do his commando crawl, then showed them how he helps me up off the floor. They clapped. Then, we did something that was outstanding. Arnie was sitting in the back of the room. I took Monty off his leash and told him to get daddy's hat. He trotted down the steps and down the isle, looking neither right nor left, picked up the hat and brought it straight back to me. We got a standing ovation for that one!

My Guys

We had a wonderful visit with our two sons, dear daughter-in-law, and three grandsons last week. Scott, the youngest, and his family have finally moved back from South Africa. He is now teaching at a private school in northern Mass, then they will move to Brooklyn where he got hired as head of the Science Department at a posh private school. The boys will be able to attend the school, which is fantastic news.

Arnie and I went up to Charlottesville to meet his new oncologist. This is a very nice man, and we both liked him a lot. He (Arnie) will be starting on a chemotherapy drug on or about July 20. We are awaiting news on help for paying for the drug, as it's over $7,000 a month. It is in pill form, and has the side effects of causing bleeding from the nose and other orifices, plus it makes your hands and feet hurt, sometimes so badly that it becomes hard to walk. Then, they lower the dose. He will take this four weeks on and two weeks off.

The bad news is, the cancer he has--Stage 4 renal cell cancer--is incurable. They can hopefully prolong his life with chemo, but he will have to stay on one kind or another for the rest of his life. I am behind him all the way. I'm happy that he's decided to try another chemotherapy drug, but I will understand completely if he decides that his quality of life has deteriorated too much and he doesn't want to take any more chemo.

We went to see Othello yesterday at the Blackfriar's Playhouse. The building is a replica of Shakespear's indoor theater. It was fabulous! We're going to try to go maybe every other month to see a play there.

Next week, Arnie has scheduled a private guide to show him places that General Mobey was. We will do other things, but that day Montana and I will be on our own. We'll hang around the hotel, and take walks and hopefully sit outside. However, the weather here has been so darn hot--we had three straight days of 100 degrees! No rain in sight, so I'm having to water every day. I sure can't do as much with a water hose as a good soaking rain can do for my gardens.