Tuesday, April 29, 2008


Oh how do I love Solu-Medrol! As I posted before I finished up my 5th course on Saturday. Sunday (without meds) my symptoms were back in full force and these past couple days have been bad with weakness, burning and numbness. The doctors have prescribed 3 more days of Solu-Medrol and I am such a happier camper. As I sit in the comfort of my own home and watch the medicine drip I feel better. This stuff rocks.

My home nurse said some people do a 3-5 day course every month - forever. Not sure it that is the best possible solution and I am making time to follow up with the docs to see what else is out there. I am happy to know that there is at least a drug that works. Hopefully we can maybe find something a little less potent to take over the long haul but in the meantime I will continue my love affair with solu-medrol.

I wonder what my post in 3 days will be coming down from this - probably cursing it and wanting more. Oh well I guess I can only take things a day at a time.

Sunday, April 27, 2008

A week of the big meds - not that bad

The home nurse from Hopkins came out last week and hooked me up with the IV steroids. I took them Tues. - Sat. in the comfort of my own home with little Charlotte Marie as my nurse. She says she wants to be a nurse now but only for me - how cute. The drugs definitely improved the burning sensation I get when I overwork my legs. I still have the leg weakness and it is slow moving for me to get around. Good news is the symptoms didn't get any worse this week so hopefully the drugs did their trick and told my body to stop with this nonsense.

I am done with the high dose and back on just oral steroids for the next week or so. Amazingly enough I thought I would go ballistic with that much medicine in my system or get terribly depressed but none of that happened. This new condition of mine has actually forced me to slow down, stop being such a type A nut case, and help me live in the moment. The only side effect that bugs me is the puffy, water retention, weight gain. I have essentially been on steroids now since the fall and my stomach is growing. I just keep saying let it go - let it go - at least you are alive.........I would still like to fit in my old clothes though.

Alex is actually being sent back to his old daycare provider this past week and upcoming week to help keep him safe and sound. Our best sitter ever is also coming during some weeknights to help me with the kids. These people are the biggest lifesavers and I am so thankful that I have a support system here.

We celebrated Dave's 34th birthday which I couldn't have pulled it of without Dan and Louise. They are such a huge support and I thank my stars they are so close and so kind. Dave had a great day and the kids had fun playing outside in the weather.

So I continue to count my blessings - my family rocks! We love our Aunt Michele (my lifeline), are gearing up to visit my Dad in AZ this summer, Gramms (as the kids call my mom these days) is bringing us dinner today, and Uncle Paul let the older 2 spend the night last night with their cousins.

Life is good - maybe even better in slow motion.

Saturday, April 19, 2008

Update from JHU

I visited the neurologist at Hopkins and have a game plan - finally!

The doctor thinks my condition is caused from either the radiation or some sort of autoimmune thing. They are leaning towards radiation causing everything but are still waiting for some tests to rule out the autoimmune option.

In the meantime I will go on high dose IV steroids for 5 days (1000 mg per day). This will hopefully stop the progression of all my symptoms. The best case scenario after the steroids is that my body thinks it has plateaued and then we can work over time (talking years) to regain almost all my mobility. I will not get back to 100% but close to it.

If it does turn out to be the autoimmune thing they have treatments for that as well and same scenario.... that I will over time get back to almost 100%.

So Dave and I are ecstatic for the good news! My worst case scenario fears of a wheel chair are gone and I see the light at the end of the tunnel. Yes this is going to be a journey and will take time but just knowing that we are on the road to a better me is great.

Next week I might be a bit of a nut on the steroids. I am also dealing with these symptoms and trying to manage the little z's - always a challenge. But all in all still just flying high that they keep saying the don't think it's cancer. Life is good.

Have a wonderful weekend.

Wednesday, April 16, 2008

Some test results

I got back the test results ruling out cancer once and for all. Always great news. The test for MS is still out and might take some time since they send it to Mayo.

I will see my local doctor tomorrow and then the Hopkins doctors on Friday.

I am feeling better and more mobile the farther away from that pesky spinal tap I am. I am up and about for a couple hours then back to sitting or I get this nasty headache and back pain.

Not much to report and just praying for the best outcome this Friday. The no cancer prayer vibes worked magic....now I just need some no wheelchair prayers.

Saturday, April 12, 2008

Hospital visit

I had hoped to lay low after my wonderful clean PET scan results and take a break from the blogging world but it's not my luck I guess. I have been having some nerve issues in my lower extremities that has caused me to fall and put a strain on my mobility. A long story short my issues put me in the hospital last week to have an MRI and spinal tap.

The neurologists have ruled out infection from the spinal fluid. My oncologist is telling me in no way does Hodgkin's go to the nervous system so I should be free and clear of cancer recurrence (whew) but they are spinning the cells anyway to double check. There is talk of MS but in all honesty I think the doctors just don't know. I have a consultation next Friday with a neurologist at Hopkins and hopefully we can get to the bottom of all this soon. Thank god for a caring oncologist at Hopkins who hooks me up with all these great specialists. I also ran into my old onc. leaving the hospital and she said she would so some research for me.

In the meantime I am back on steroids and in some pain from the spinal tap. It is difficult for me to move around but hopefully that will go away sooner rather than later and I can once again be chasing Alex around.

Louise, my mom, Dave, and Michele are all here helping out - true lifesavers once again.
I will post something once I have any news. Still just thankful to be alive and cancer free. I can handle a little less mobility as long as it's not life threatening. Boy your outlook on things change after you have gotten off the cancer roller coaster.