Oxygen

I began the oxygen treatments on Monday. My first session was cut short since my symptoms started to flare and my overactive bladder made me get out of the tube to pee. Today I managed to hang on the entire 2 1/2 hours but barely....even with meds the docs prescribed to help. Hopefully tomorrow will be better and I can stay in for the duration without feeling like I am going to pee my pants. My doctor said we will give this treatment 1 week and then assess the situation and see if the cytoxan is a better option.

My mobility sucks big time. Walking is very unsteady for me and it is best for me to be wheeled around when going long distances. I still cannot drive and it is painful to bend, reach, and pick up stuff.

We have hired full time help for the kids in the home since I am gone durining the morning hours getting treatments and then wiped out from all the walking afterwards. Essentially I just can't keep up anymore.

Today is Charlotte Marie's big 5 year old birthday. We had a little pre celebration at my mom's cabin over the weekend since my mom is out of town today. She got a princess boom box and a Hannah Montana cd. We are officially in Hannah Montana mode and Charlotte wants to be a rock star just like her!

I was recalling earlier that this time last year I was hospitalized for Charlotte's birthday. So I guess thing are crappy for me physically but at least I get to be home.

News from Hopkins

I had an appointment with my doc at Hopkins on Friday to follow up on my incident in AZ. My lesions have not grown nor have they shrunk. He also does not think we have hit the plateau needed to stop the progression of my symptoms.......obviously since I need assistance to walk right now.

We have the following options for reaching the plateau needed:

1. Take vitamin E - harmless and helps some people
2. Coumadin treatment - a blood thinner taken with the idea that there are possible tiny blood clots in my spine causing this problem. Risk is bleeding and I am a HUGE fall risk.
3. Hyperbaric oxygen treatments - the idea here is that my spine is being deprived o2. Risk is my lung condition from before (BOOP) and would I not be a good candidate. Also this treatment could put stress on my heart; an organ I have managed not to mess with yet.
4. Cytoxan - a chemo drug I have taking in the past that is sort of stepping the steroids up a notch to knock out any inflammation if that is the cause. The drawback with this treatment is my sensitive liver.

So my doctor is consulting with all the other docs to see what is best and hopefully get started with a treatment early this week. Pretty much he laid it out that there is not a lot of research for radiation myltetits. We don't know what is causing the flare ups (need for O2, inflammation, blood clots) and there is no simple test to do a check see. Pretty much we need to start trying treatments and hopefully something will work. He stressed again that this is a long road and that none of these treatments are going to have me wakeing up the next day feeling better.

I am in somewhat uncharted territory and it is reminiscent of the pregnant with cancer feeling. You just have to take the leap and have faith.

"If you are going through hell, keep going."

Words of wisdom from Winston Churchill for times filled with extreme frustration.

Based on your track record, I know that you will get through this Heather.

Love you - Michele

Radiation myelitis

It seems that my condition might be a bit confusing to people so I am posting to shed light on what exactly is wrong with me. I have radiation myelitis.

It is defined as: damage to a portion of the spinal cord from exposure to x-rays or other high-energy radiation; most often affects the cervical segments; depending on their time of onset and persistence, two forms are recognized: the early type which appears within 6 months following irradiation and may be transient, and the late, delayed type, which appears more than 6 months after radiation and is typically chronic and progressive.

The damage to my spinal cord is exactly where they did my rads. Since my diagnosis and recent set back I have had several MRI scans and steroid infusions. To date my scans and treatment have stopped the progression of my damage however it has not improved my situation.

Exactly how this damage to my spinal cord messes up my mobility and such can be better explained by the Transverse Myelitis Association at http://www.myelitis.org/. My myelitis isn't transverse but is very similar and I am given much the same treatment options and use their discussion boards as a resource for my symptoms and on the look out for drugs that could help.

I often get asked if I am better.......I feel the need to explain that this condition will not just get better overnight after a hospital stay or drip of drugs. My neurologist has told me that it could take several years to see improvements. So like the cancer I guess I am in this for the long haul. At this point I pray that my condition doesn't get worse and at some point gets better. Right now I need a cane to walk, I drag my right foot, the stairs are very difficult to maneuver, I have to sit to dress myself since I can barely bend over and I can't drive since I can hardly lift my right foot.

I am frustrated and emotionally spent these past few days. I need time to adjust to my new normal and move on with life. My priority is always the little z's and making sure my disabilities don't impact their lives. They are great, helpful, and mindful of my new issues. I just wish they didn't have to deal with all this bs.

Pictures from AZ

I am posting some pictures from the AZ trip. The kids had a blast with their aunts, uncles, grandparents, grand uncles/aunts, cousins.......

So this symbol totally sums up my past week's experience and life for the foreseeable future. Let me just say camping in the remote wilderness is not a good idea if you have neurological issues.

My trip to AZ caused my existing scars to flare up and I was falling and almost unable to walk without assistance. I ended up in the local hospital for a 2 day stay to confirm that it was just a flare up of my existing condition, given some meds, and released in time to fly home. Thank god my sister was on the trip with us - she took care of the kids, me, and rearranged her flight to help me on the plane.

What is next? I have to see my doctor this week and get some more drugs - fun fun since of course it is steroids. I HATE steroids!!!!! I need to find a permanent caregiver for the kids in our house since I can't drive right now or keep up with Alex. We need to get the house up to speed with more handrails and stuff....navigating the stairs is dangerous.

My life is totally upside down right now and my head spins when I try to figure it all out. Balancing my health issues, taking care of the kids, and making sure Dave stays gainfully employed is stressful to say the least.

I am bummed out the most that my independence is gone and that I am unable to care for my own children. I need some time to snap out of this rut but I am sure I will bounce back soon. I just need to remind myself that although my life is different it is still life after all.