Don't Even Try to Stop Me!

Me and My Guys on Christmas Eve

Happy 2011. I’m hoping this is my lucky year!

I had a little setback recently. A few days before Christmas, I fell outside of the post office. My leg just gave out, and down I went on to my knees and hands. My doctor told me that Decadron weakens the large muscles in your body, so that was the reason why my legs were getting weaker and weaker with each dose. When I fell, it didn’t seem like a big deal. My knees were sore and a little cut up, but nothing drastic. But my legs were very swollen from from the steroids, so it was difficult to discern the damage.

But by Christmas Day, I was limping badly on my right leg. The next day, I could barely walk five feet without crying. Literally. And I don’t ever cry from pain, not even when I get a bone marrow biopsy. So that was my “big hint” that something wasn’t right. The next morning I went straight to my primary doctor, asked for an ultrasound and x-ray to see if I had a blood clot in my leg. I had one before, a long time ago, from a car accident. So I kind of figured out what it was. And I was right, so I was admitted to the hospital by that evening.

Fortunately, my local hematologist was at the hospital the next day, and he immediately became involved. My biggest fear was that the blood clot would delay my stem cell transplant. He spoke with Dr. Porter at HUP, and they came up with a treatment for the blood clot that would not interfere with the transplant at all. I was so happy! And with that treatment plan in place, I was discharged from the hospital within 24 hours. I was so relieved to get out of there. I felt like I was in a germ cloud. It is just the nature of hospitals, but the last thing I need is another complication.

I’m feeling much better now. I can walk very well and can drive again. So now that this "little problem" is being taking care of, we are going forward with planning my transplant schedule. As of today, it looks like I may be admitted to HUP by the middle of January. Once the date is definite, I will put it on my blog.

Thanks for checking in on me. We are doing well, hanging in there, and thinking positive thoughts! Happy New Year, everyone. ; )

Silver Linings

Ahh, Decadron, I have so not missed you. Since I’m writing this at 1:37 am, does that explain in a nutshell why I feel this way? Dr. Porter put me on a rather high dose of Decadron (dexamethasone), which is a steroid, to keep the Amy Army suppressed while I wait until January, when I can have my stem cell transplant at HUP with my new insurance company! As a result, my energy level is very high (lots of cleaning going on) but I can’t sleep due to restless legs. So I started taking potassium supplements to help out with this problem. If that fails to do the trick, I guess it is back to Lyrica, although I really don’t want to go through that again. Going off Lyrica caused two weeks of killer headaches for me!

I am trying to take this unfortunate delay in good stride. The hospital is no place to be during Christmas. I’m happy to be able to have a relatively normal Christmas with my family now due to this insurance snafu. My house is partially decorated already (steroids help, zoom-zoom-zoom!), so that is nice. But we will skip the big Christmas Eve party with 7 fishes this year. I don’t think that is even possible for me to undertake. It was difficult for me even last year, I remember. At the time, I just didn’t understand why it was so hard. My energy level was not normal. I had to take many rest breaks. I figured I was just getting old! Little did I know what was brewing in my bones. How odd to think back on one year ago and think of how much has happened since then. Many changes in my perspective due to very unwelcome, life-altering news.

However, I still maintain that every black cloud has a silver lining. I have found my husband to be a tremendous, unending source of support and love, although that doesn’t surprise me in the least. I have come to realize that a lot of people, more than I ever would have expected, truly care about me and my family, and that is an awe-inspiring thing to discover. I have made strong connections with new people that have come into my life that either have, or treat, my unfortunate disease, and I treasure their input and guidance. They feel like family to me. I have come through adversity with equanimity and a positive outlook. I thank God for this strength. I could never survive this ordeal without that strength, which is as much in my blood as those dreadful plasma cells. I guess my parents knew what they were doing when they named me Faith.

So I remain positive that things will work out. I am especially happy to be spending Christmas with my family, and not in the hospital! I am thankful that I will soon get my transplant. I am so very grateful to have good health insurance. Things will get better soon, and while I’m waiting, there are books to be read, drawers to be cleaned, decorations to be placed, and cookies to be baked!

God Bless you all, and I’ll be back soon. Probably in the middle of the night again.  ; )

All That Glitters...

I had another treatment yesterday, and it went very well. Since Velcade is not your normal napalm, burn-and-blast-everything-in-its-path-type chemo drug, I like to think of it as my own personal PacMan in my bloodstream, cheerily chomping up plasma cells. I do believe there is some benefit to be had from directed imagery, where you think of the medicine going in your body and having beneficial effects. So I picture "glittering" Velcade sliding through my dark veins, chomping on those lurking plasma cells. I guess it is working as my counts are starting to go down. Something is happening, that is for sure.  Now, if only I can find a seat in church where no one will cough on me! But I feel so well, that I practically feel guilty. Other people get so exhausted, so I'm very appreciative that I get such an easy treatment (for now).  This drug is so sophisticated that it is hard to explain how it works. Perhaps I can prevail on my good friend, Tim, a scientist, to give me an explanation in layman's terms for apoptosis? Then I'll post it for you all.  It is way more amazing than flying to the moon!

I just finished reading an inspiring story written by a 16-year and counting AL Amyloidosis survivor (http://sites.google.com/site/curedofamy/Home).  He was in congestive heart failure, very bad shape, and had a peripheral blood stem cell transplant in 1994! He was the 2nd patient known to have this done for amyloidosis. An amazing and inspiring story. This guy has more guts and gumption than any ten people you know.  I hope some of that has rubbed off on me. He has strengthened my certainty that I will do really well with this treatment. Do you know that many people don't get the proper diagnosis of AL Amy for over 2 years? It took my great docs only 3 months. That is going to make all the difference.

I have my book club tonight, and I hope that I can stay awake for it, since the Decadron woke me at 3:30 am. A small price to pay. More treatment on Friday, and then I get one week off for my counts to come back up. I actually look forward to the treatments, as I know I am making progress. And it doesn't hurt that my doctor's office spoils their patients with coffee, juices, breakfast treats and even hoagies for those with strong stomachs! If I stay on these steriods much longer around all that food, I'm going to have to buy some PLUS sizes.  ; )   Later.