Sunday, August 31, 2008

Life in a wheelchair

I thought I would post about what life is really like for people with spinal cord injuries, paralysis, or loss of mobility. Let me just say I was SO naive prior to all of this happening.

The cane and walker were so manageable and how I dream of life with them and not a chair. But since the chair is what I have to deal with then so be it. You have no clue how heavy dead weight legs are until you have to use your own upper body strength to move them everywhere. I cannot even barely move them in bed, bend them on my own, wiggle my toes....just dead weight. .

Also I guess in my own stupidity, I thought that if you were in a chair that obviously meant that you couldn't feel your legs. Well I can feel my legs, they provide plenty of pain, spasms, but they just won't move. I don't know which is more frustrating. Steroids and some pain meds are helping me with the pain issue in the hospital. We will have to re-address that once I get discharged since the steroids will be lower dosages.

Something more personal that I had never even considered when looking at everyday people in wheelchairs is how do they use the facilities. With my condition, any many spinal cord injury people, I am unable to control my bladder. I retain my urine and it is amazing how much my bladder holds without me knowing since I have loss of sensation. I can measure up to about 6-9 coke cans of fluid. I must catheterize to empty my bladder or I get urinary tract infections. Of course I cannot feel any of the early symptoms so left unattended it would cause kidney infection. The bowels I still have control of but you can imagine getting to the bathroom is a royal pain.

I have realized that there are many helpful people out there willing to open a door or give me hand. To my amazement there are still very rude folks that just turn a blind eye to someone in need. I pray I raise my kids better than that.

My upper body strength is getting better each day and I am learning the tricks of the trade to get from my bed, chair, and back again. All of which is a work out in itself.

If I could pass along any unsolicited advise to anyone that reads this board - if you have the ability to get up a go the do it. You never know when it could be taken from you. I guess it's that same old thing I have been trying to remind myself; don't take today for granted because you don't know what tomorrow will bring.

Saturday, August 30, 2008

Fighting for my arms/hands

I spoke to the doctors yesterday and explained I will do ANYTHING to keep my arms and hands from paralysis. We will keep me going on the high dose steroids then move forward with the 2nd round of avastin - not even waiting to scan first to see if it is working......just go ahead and do it.

The only other thing that keeps getting tossed around is doing a biopsy to make certain this isn't cancer. If it were there is nothing they can do to treat it and only do radiation to buy me time. The biopsy could also permanently paralyze me from the waist down. I am not going there, not doing the biopsy, and keeping hope alive that this can all turn itself around one day.

So we are taking a $20 K gamble on avastin right now. I just have to believe it will work. Only time will tell.

Thank you to everyone for the support and prayers.

Friday, August 29, 2008

Back in the hospital

So I am back up in Baltimore. The doctors have started the 1 gram of steroids again and will continue until Tuesday. I will then be transferred to in patient rehab so I can learn how to transfer my self from bed, to the chair, to the bathroom, etc.....

What I need right now is everyone to pray that this does not take my hands and arms from me. Unfortunately today they said they see signs that it is effecting my right hand. I am waiting to see the doctors to plead to give me everything they have to save my hands. I will do whatever it takes at this point. I can handle the chair and have accepted it. I just don't know how quickly I would bounce back from loosing my arms and hands.

Thanks for your support.

Monday, August 25, 2008

When will it kick in?

I am waiting for the Avastin to kick in. I think I have googled every possible combination of the question "how long will it take" and I can't find an answer.

In the meantime my symptoms are worsening. I am pretty much in a wheelchair and can walk only a few steps with my walker. Someone has to be around when I go to move from the bed to my wheelchair or if I need to shower.

Dave and I are seriously thinking about moving since he is going to break his back trying to help me down the stairs. The stairs are my enemy right now and going up/down is very painful.

So when will this medicine start working???? I pray it begins to work soon.

Saturday, August 23, 2008

Another stay at the hospital

My symptoms worsened over last weekend and I was admitted to Hopkins on Monday. They preformed another MRI and the lesions have grown. My doctor suggested taking Avastin, a drug that blocks blood vessel growth. The drug has been used in patients that had radiation treatments for brain cancer. It seems effective in the brain cancer patients and they even show improvement. I took my first dose in the hospital and was discharged. We wait 2 weeks, do another MRI, and hopefully it has worked.

The only pitfall with this drug is the cost ($10K) a dose and we don't know if insurance is going to cover it. If it works I might need 6 doses - we really don't know since I am the first person ever to take this drug for radiation myelitis.

Meanwhile I am finding life frustrating at home. Our house is a split level and not made for a person that needs a walker and wheelchair. I am supposed to limit my trips up and down the stairs so I am spending a lot of time in my bedroom then coming down at night for dinner.

Thank god my sister was in town all week while I was at the hospital - helping with the kids. Dave is wonderful, helpful, and very understanding. Things are difficult right now but hopefully we can get beyond this stuff soon and life will settle back down.

Tuesday, August 12, 2008

Bikes, scooters, and cozy coupe

Lee learned how to ride a bike this weekend. Charlotte got a scooter (a belated bday gift from Nana) and is cruising up and down the driveway. Alex got an early bday present - a little tyke's cozy couple - and calls it his bike. He is a bit confused but having a blast.

So all in all the kids are definitely enjoying the new asphalt driveway. I think they spend more time on the side of the house then out back these days. Finally they have benefited from my new handicap - we upgraded the driveway so I wouldn't crack my neck.

We got some pictures on one of the kids cameras. I will post soon.

Thursday, August 7, 2008

More oxygen

So I am still doing the oxygen treatments. To my utter confusion my lung function tests were better even though I still cough and wheez. So my doc is ordering a ct which will most likely happen early next week. Hopefully this will shed some light on what is going on inside my lungs. But I am not getting my hopes up too high since recently the medical field is more baffled by me and my problems then they are helpful.

Not much to report since I basically drag my sorry legs to treatment, suck up some oxygen, and then come back home. Michele was in town for the majority of the week so we went out to dinner with mom a couple times and drove around......but that has been the big excitement of the week. Oh yeah I got to go to Baltimore to do my lung function test - good times.

So possibly you sense my annoyance with all this medical crap. It has been over 2 years! It is wearing thin to say the least.

Dave and I are thinking we might do a family trip for Alex's big 2 yr old bday. We haven't really been together much since PR and that was back in May. Now if someone could please tell my lungs and legs to get their butt in gear so I can enjoy a weekend away....wouldn't it be nice if it were that easy.

Tuesday, August 5, 2008

Carrie out there?

This post is in reply to Carrie that published a comment to my blog. I would love to get in touch and share my experience with the radiation myelitis - can you send me your email address? I am at


Friday, August 1, 2008

Might be my last day in the tank

I have completed 9 oxygen treatments as of today with a total of 30 scheduled.

After 4 treatments my neurologist ordered a pulmonary function test (pft) because the technician said my lungs were wheezy. My neurologist tracked down my pulmonologist (whom I love and has since moved to Atlanta) and they discussed the results. My lung doc was not happy to hear that my lungs are slipping backwards. They decided to let me try the tank for the remainder of the week and then have another pft on Monday. If they have gotten any worse they are stopping the oxygen treatments and will start up cytoxan.

From what the doctors say there is such a thing as too much oxygen. And in my case all this O2 could possibly be aggravating my BOOP. My neurologist does not want to in any way cause damage to my lungs and I have to agree......lugging around an oxygen tank with my cane and foot drag is a recipe for disaster.

Maybe my lungs will pull through on Monday, maybe not, I am rather impartial. I have come to accept the fact that all these treatments have side effects - there is no free lunch. Hopefully we can find something that works on my neuro issues and doesn't harm any of my major organs.

So in the meantime I have been scouring the Internet for any information on radiation myelitis. There is just about nothing out there. I emailed the doctor I consulted with at NIH to see if he knew of any studies or doctors working on this - nope. I seriously do not know why I always end up in that small percentage of the population that gets crap like this, or my lung issues, liver issues, pregnant with cancer..........jeez! I just want to be the typical patient for once.