Monday, November 5, 2007

Nothing new here

I don't have any new information to present or insights to share but I have been having some new experiences that I need to talk about. It's sort of a long story but I'll try to present the ultra-condensed version here.

I was diagnosed with MS when I was 3o, that's 4 years ago. At that time, I was really optimistic and looking forward to everything. I had a lot of faith that things would work out somehow and that God had a plan for me.

I was diagnosed with Cancer when I was 32, that's 2 years ago. Testicular cancer (like Lance Armstrong but not so advanced.) has a low mortality rate and something like 99.9% of folks who are diagnosed before metastasis as I was are completely cured. I was completely cured. I chose to go through Chemotherapy rather than radiation because some studies indicated that it may be marginally better and that the negative side effects were certainly less. It was rough but probably more on my wife than on me, she was conscious the entire time and had to take care of me (which she did without complaint very well.)

During this time, my wife and I became foster parents. We had one biological daughter when we first got married but had bad luck since then (not for lack of trying, I assure you.) We could either go through the infertility route or the adoption route. After prayerful discussion, we decided that the adoption route was best for us and chose foster care as the mechanism to bring that about. For those of you who don't know, foster care is full of children with heart-breaking stories. One little boy we took in watched as his mother was taken by police and cuffed for dealing drugs. He cried for hours wanting his mommy back and being worried that she would be "cut" in jail. He was 6 years old. We really tried to do our best both in helping other children and completing our own goals of increasing our family size. We adopted 3 boys (siblings) who are more than wonderful.

The foster care system is administered in California at the county level. There are LOTS of problems with it. Nearly every other week, we got new social workers or administrators because they were undergoing yet another reorganization or else they were revamping some program or other. Most of the people that we dealt with were incompetent or their hands were tied and they couldn't do their job because of some policy or regulation that was in place. The kids were the only redeeming quality of the entire system and that's why we stayed and put up with the other junk.

In February we had 4 little girls in our home from foster care. This was a lot to us but we had prayed about each placement and felt it was the right thing to do. One had been in our home for about a year and a half and we were very close to adoption for her. The parental rights were terminated and if our social worker had not just gotten married, we would have adopted her already. The other 3 girls were siblings with the youngest being a brand new baby. They were also proceeding along the adoption track. It was an amazing time for us. We had our hands full taking care of them but it was so rewarding.

Tragically while I was on a business trip to Washington D.C. the baby died of SIDS (Sudden Infant Death Syndrome - for which there is no known cure or prevention). It was shocking in the extreme. I flew home on the next flight. My mother in law and my mother both flew out as soon as they could. It was an amazingly difficult time. While talking to the kids about what had happened and where the baby was now, etc. I felt that things would be ok, that somehow this was part of God's plan for us. It wasn't over though.

The next day the county (which had been involved all this time) came and took the other 3 girls away from us, telling us that it was a temporary measure they always did when this type of thing occurred. In my life it is customary for a family to pull together and find strength with one another as difficult things happen. Having the girls removed made it harder for us. After they had been gone a week, I was finally able to get through to the social worker responsible for one of the girls. She curtly told me that the child was no longer under our care and that she would be adopted by another family and then hung up! I called back 3 times to receive tiny tidbits of information before she hung up on me again and again. We were overwhelmed to say the least.

It turns out that the county had determined that since the child had died in our care, they couldn't allow any other children to ever be placed in our home. They were seeking a revocation of our license. They had also published our names on the national child abuse index as being guilty of "severe medical neglect" so that not only could we not be foster parents but we could also never adopt again or even help out in our children's school classrooms.

We prayed a lot to try to understand what we should do. We ended up going to court to contest the removal of what we considered our children. I had strong feelings that things would turn out right and that the girls would return. I put my whole soul into doing what I felt was the right thing for me to do. In the end, after the longest court action this judge has apparently ever had, she ruled against us and for the county. This was devastating. A couple of weeks later, the child who we should have adopted had our social worker not been getting married, was adopted by another family. All of our rights with regard to the other two girls were terminated as well.

I write this not for sympathy or even hoping that some avenging angel will read it and stick it to the county folks, but to try to illustrate why I feel the way I do. Since this time, I've had a really hard time understanding the situation. I felt that God was telling us that we would get the girls back and now I can see that they can't possibly come back. I feel that the compass that I had to direct my way, my assurance that things would turn out in the end is gone. If the message from God had been, "The girls won't return, this is part of the plan." I would have accepted it but I feel that I received the opposite message and then as I followed it with all my faith, discovered that I had just stepped into empty air.

I don't have any faith in the future at this point. I don't know what will happen or have any faith that it will turn out for my good. I have felt feelings that I associated with God's communication to me throughout my life. I have to reexamine those feelings now I feel. I feel aimless, like it doesn't matter. My love of life has run dry it seems. There are things that I should do around the house (fix this light, install a phone jack in this room, help my wife with this or that) but I'm just completely without interest.

Has anyone had an experience that just knocked the air out of them like this one and if so, what do you do? If you read this far, you are a real trooper, thanks for listening.

Tuesday, October 9, 2007

Photos of the spot in my head . . .

I finally got the MRI photos of the mysterious spot in my head. Here is the spot from two different angles. As you can see, it's right in the middle of my head. My neurologist wins the understatement of the year when he said, "It's not a good place to biopsy."

Thursday, September 27, 2007

All went well!

Yesterday I had my first infusion of Tysabri and it all went very well. I had no reaction at all to the medication which I think is a good thing. My wife came with and sat by me to keep me company and to help me (her support is invaluable.) I don't feel different than I did two days ago but from the material that I was given, I think that's a good thing. I feel hopeful about the future whereas before I was scared. I feel blessed to have been given hope.
I also had a PET scan yesterday. They injected me with radioactive sugar and then I lay very quietly while they ran me through a donut that looked much like the CAT scan one except much quieter. I didn't get to see the photos but I'm hopeful that they don't find anything interesting. It's a little funny that people who go to the hospital want to be exactly the same as everyone else while when people go to other places, they want to be seen as individualistic. My wife thinks that my body matches my personality in it's inability to blend in. I've decided to consider it a compliment.

Tuesday, September 25, 2007

Tomorrow is the big day . . .

A lot has happened since my last post. As part of the preparation for taking Tysabri, I had an MRI of my head taken. My MS hasn't progressed much in terms of scaring in my head (which is good news) but there was a spot that was a cause for concern. When I had my last MRI a couple of years ago, there was a spot near my hypothalamus that showed up. I spoke with a doctor in neurosurgery and he scheduled another MRI for a year later that somehow didn't get done. Anyway, the blip showed up again and this time it "took the dye" better than last time. There is good and bad news about it:
  • Bad news: the neurosurgeon that we spoke to said, "In my 30 years of neurosurgery, I have never touched this area of the brain. It's just too risky." So basically I would have to have very serious side effects of having something there before they would even go in an look at it.
  • Good news: it has not grown between the time we saw it last and now. If it was cancerous, it would have grown and been the source of numerous problems (double vision, serious headaches, and cognitive disfunction which is code for trouble using my brain at all.)
So at this point we'll keep and eye on it and hope and pray for the best. In other news, my cancer doctor (I had cancer a couple of years ago and went through surgery and chemotherapy) noticed that one of my Lymph nodes is somewhat enlarged and requested that I get a PET scan. PET stands for Positron Emission Tomography. I had one once before. I think this is how it works: They inject you with radioactive stuff and then watch it and take pictures of where they are interested with the "light" that results from the radioactive decay. It's a little freaky because they put on this suit and stand behind this thick metal shield to inject you (standing there in your underwear) with this dangerous stuff. Then they get away from you so that you can incubate until it's time to take the pictures.
Tomorrow is the big day for everything then. I'll have my first Tysabri injection in the morning and in the afternoon I'll do the PET scan. I'm a little nervous but I think it's the right thing to do. Hope all goes well.

Tuesday, August 7, 2007

Tysabri for me . . . ?

I finally spoke with my neurologist today, prepared to do battle to get Tysabri rather than Copaxone since I have been feeling that Copaxone hasn't been working as well as I would like. Dr. Danish was wonderful. With doctors like that, I don't feel like I will ever switch from Kaiser. He was extremely reasonable. He of course wanted to know why, I explained that I was quite a bit more tired and having new symptoms (my newest is numbness in the tips of my toes) as well as nerve pain in my hands and joints. He indicated that the anti-depressant that I was taking (generic Celexa) sometimes causes patients to feel more tired and sometimes the other way around (which is strange I think but believable somehow). He suggested ways to fight the fatigue include changing from Celexa to:
  • Wellbutrin (which I unfortunately already tried and switched to Prozac because it gave me headaches)
  • Prozac (which I also tried but since I was having trouble sleeping but still feeling fatigue, switched to Celexa)
  • Effexor which I haven't tried.
He also suggested that maybe using Provigil when I have a very difficult time with fatigue (so not on a regular basis but as needed). I need to read over the pages on Effexor and Provigil up to see what the side effects, etc are and talk it over with my wife. I'm very up-beat today because I feel like Dr. Danish was so helpful - the way doctors should be - willing to take time for me and eager to help me in the best way possible. I think he could also tell that I had done my homework and that helped.
Signing all the forms to sign up for TOUCH and Tysabri is pretty scary - they want to make sure that you know that you might die if you take it and that's a little intimidating to say the least. I have read about several people who have been presented with different views on the uses of Tysabri from "only as a last resort" to "everyone should be taking this." Dr. Danish took a reasonable approach. He explained that it's better at stopping MS than anything else but that it has the potential severe negative side effect of death and so he only recommends it when other medications don't work. That being said, he was more than willing to allow me to "take my life in my hands" and choose it if I thought it was best for me. I can't say how glad I am for his wonderful attitude! I was able to get a time slot for an MRI for Sunday and so I'll be off and running in no time at all.
I let my wife know that I had signed all the forms and she had mixed feelings. I think she is more worried about me than I am. I had cancer a couple of years ago (Testicular - I'm half nuts but not likely to win the Tour de France) and I know that she was very worried about me then, more than I was worried about myself. I wonder if this is generally the case with caregivers. I know that when my kids are sick, I sometimes have to take a time out because I don't know what to do with myself because I'm anxious. She and I are going to pow-wow tonight and say some prayers to try to decide if Tysabri is the right thing for me. I have felt as I have learned about it that it is but I think being specific and asking in prayer is never a bad idea.

Thursday, July 12, 2007

MS and thinking clearly.

The other evening as we were sitting down to dinner, my wife asked me some questions (I don’t remember about what.) As I was trying to answer, she said, “You aren’t well, you can’t remember the name of anything lately.” I realized that she was right, I had been struggling all day trying to remember the name of different objects or the right word for a particular sentence. I haven’t had that problem before. I’m not a very garrulous person but I don’t have to stop in the middle of every other sentence to try to remember the name of something or because I can’t find the right word. Recently I’ve had a very mild relapse where my right side has been hurting and by thinking back over it, I realized that the problems I’ve had with words have coincided with the pains in the joints of my right hand and ankle. I’m scared to death that MS is affecting my ability to think clearly. I’m a scientist and I have to do that all day long every day. I’ve had it on my mind almost non-stop since my wife made that comment.
I’ve always felt that the physical problems that come with MS were just “the way it is.” Since I’ve never been very physically active (I’m the guy who reads a book rather than playing soccer with everyone else), the idea of having physical limitations hasn’t bothered me more than the feeling that I will miss playing games with my kids and building stuff with them. When I think about being intellectually weakened, however, I’m horrified. I wish I could make a deal with it – Take anything you want but I must keep the ability to think clearly.

Monday, July 9, 2007

A good weekend . .

This past weekend was quite good. Although my right side (right hand joints and right ankle) continue to hurt (going on 2 weeks now), I didn't overdo like I do most weekends and I was able to go to church on Sunday and have a very good day at church. On Saturday I helped move dirt for the terraces that we are putting into the back of our property. The kids and I were able to move quite a bit before I was so hot that I knew I needed to go in. They continued to work on it after I left and I made everyone some yummy burritos for lunch/dinner.
I put in a call to my neurologist to look into Tysabri as a new treatment option for me (I'm taking Copaxone now). The promise of a stop to the progression is too much not to at least look into. My wife and I are worried about PML of course but the risk seems quite small and the payoff quite large. I feel compelled to look into it anyway.
At church it seemed everything was directed to me. Speakers spoke on the importance and power of prayer. There are three possible outcomes - yes (feels right), no (feels confused) and no answer yet. Everyone agrees that the last is the hardest but one speaker spoke about how not yet really is not yet and that if you go forward with what you think is best, God won't let you go too far before telling you that your chosen course is either right or wrong. Mens group talked about the importance of faith and how it is by doing that we receive confirmation that something is right or wrong. I feel in more than one area that I should go forward with my best guess at what is right and then see.
Today was our kids first day of summer school. My wife and I took a walk together after she came home. It will be a real treat to be able to take a walk together each day before work and after the kids are off. It think exercise is critical to doing better with MS and I'm overjoyed to have a chance to do it with my wife. Hopefully we can have some good talks and also some good exercise. I'm hopeful about the future today.

Friday, July 6, 2007

I continue to read the blogs of other bloggers with MS, Living With MS - had several good resources to consider. One is the role of exercise in the progression of MS. She mentions yoga as an very useful and gives a couple of links. They have yoga classes here at HRL but I've always been a little nervous about going to them. Probably I should get over my anxiety and just try it out. She is also quite vocal about Tysabri which had initial PML scares but, as she points out, is a good choice for a first line of defense against MS.
She gives a link to some good reading material.

Thursday, July 5, 2007

More getting up to speed on MS from other blogs . . .

I've been doing more reading of other blogs from folks with MS today. I have a plethora of things to look into:

From My Complications:
Plasmapheresis (Plasma Exchange)

From Shoester:
Pubmed has RSS feeds which I will subscribe to. (Broken at this particular moment but I'm hoping it will recover and that I have the right link.)

Quite a few people have discussed and switched to Tysabri with quotes such as "if 2 people hadn't died of PML, it would be the only drug on the market." and 66% effectiveness. I think the right thing to do is to talk with my neurologist about it first rather than other, non-FDA approved things.

Tuesday, July 3, 2007

Links from Other blogs

Today I have been reading from some other MS centered blogs and learned some interesting things that I should look into further:

From Mandatory Rest Period there is a story about Tovaxin undergoing clinical trials. In addition another drug, MBP8298 is undergoing trials but only for people further along than I am. Also there is a link to that trial in the web site sponsored by the national institute of health where you can look up trials that are currently recruiting for patients. I'll have to first check out all the recruiting for MS related studies and then set a watch for new ones.

From Erik's Multiple Sclerosis & Lyme Blog: Alternative medicines: Evening Primrose Oil (EPO) and Fish Oil.

First post - some background

For my first post, I should probably give a little bit of a history of myself and my experiences with MS. I'm a scientist doing research in the areas of photonics and information assurance. I currently work for HRL Laboratories. I got my bachelor's degree in physics from BYU and my master's degree in electrical engineering from Caltech.

I was diagnosed with MS in the year 2004 (Age 30) after the left side of my face went numb for a short time. I have had problems with pain in my digits and wrists for a long time and took multiple tests for arthritis (which were all negative.) After diagnosis, I was prescribed Copaxone. I give myself an injection each morning after my shower. At first I was terrified of needles but since that time, I have grown calloused and can give myself a shot without even blinking now.

After diagnosis, I could finally explain why I felt suddenly very tired sometimes and also why, at times, my hands hurt so much. I felt empowered and spent quite a bit of time on the web learning all that I could about MS. Since that time, learning about MS has basically stagnated along with the progression of my MS. In the past two months, I have felt it's effects more than in the past and probably as a result have decided to renew my education of MS and look into some other alternatives that may help me increase my health quality.

I plan to use this blog as a mechanism to help me track my learning about MS and also progress (or lack thereof) as I try different things to reduce it's impact on my life. I have heard "rumors" that changing my diet, exercising more, and trying some alternative medicines may be in my best interest and so I'm using this blog as my journal to keep track of resources and events.

Most recently, I have heard of a drug called Naltrexone that was approved by the FDA in 1984 in 50mg doses for helping heroin and opium addicts recover. I hope to be able to convince my neurologist at Kaiser Permanente to give it a try.