Thankful

The days are passing by, and I continue to do well with Revlimid/Dexamethasone as my new treatment. Of course I haven’t had any blood work done since I started, so I don’t know yet if the treatment is actually effective. I am tolerating it much better than Velcade. My only side effect is edema, which is probably from the steroids. If you have a “Listerine” mentality that if it tastes bad, then it must work, my lack of significant side effects doesn’t bode well. However, I am hopeful, ever hopeful, that the Revlimid is chomping away on those bad plasma cells and reducing my lambda light chain in a big way. We shall see.

Although AL amyloidosis seems like having an alien at large in my bone marrow, the truth is that it is my very own plasma cells that are going to kill me if I don’t kill them first. How strange it is to think of cells growing wild in your bones, even though you feel pretty normal. Perhaps that is the problem with amyloidosis; you feel relatively well for a long time, until it has ruined your heart or your kidneys. I still wonder how long I would have gone undiagnosed had I not had my annual checkup in January? I still feel the same as I did then: a little fatigued, ankles a bit swollen, red spots around my eyelids every now and then. Who suspects a life-threatening disease when they have a little fatigue? Who expects to need a stem cell transplant for swollen ankles? It is simply too weird, too bizarre, to jump from a subtle symptom to drastic life-saving measures.

And so I take my pills each day, amazed that I don’t have to feel worse to get better. (At least I’m hoping that is true.) Modern medicine is truly awe inspiring. I once told my doctor that I was glad he had to figure out everything instead of me, because it sure is a complicated mess. Drug interactions, genetic abnormalities, past medical issues, the list of complications goes on and on. How they figure it all out is beyond me, but I’m surely thankful that they can.

Tomorrow

Treatment with Revlimid is going well so far. The only side effects are tiredness at night and that rash I mentioned earlier, which seems to be fading. I'm thankful that it is going so well. I sure hope it is doing something! My doctor says I'll probably have two months of treatment with Revlimid, and then we will consider stem cell transplant at that time. I think it all depends on how many (bad) plasma cells are remaining.

I look forward to a day where I no longer have to think about my disease. It is possible, I suppose, that I will wake up one morning and not think about which pills I need to take, whether my stomach is upset, or how swollen my feet are today. Most importantly, I won’t be worrying about how I’ll be (or if I’ll be alive) next year at this time. Part of me wonders if that day will ever come, and the other says, “Don’t you dare doubt it for one minute!” Accepting that even next week is unknown is surely a huge part of my daily struggle with amyloidosis. Treatment is not always successful; a future is unclear.

I just read the blog of a man, a barbeque specialist, who wrote about his third place win in a prestigious barbeque contest and was promising to post photos on his blog tomorrow. On the next day, the blog was written by this man’s son, who said his father died unexpectedly the previous night. It was very touching and strange to read his son’s grieving words and this deceased man’s last thoughts, knowing what he did not, that it was his last day to live on this earth, and that he would never post those photos. “Tomorrow is promised to no one.” I know this to be true, so why do I always feel like tomorrow is definitely going to happen?

It must be that we can’t perceive a world without ourselves in it. I think Freud would point out that one’s Ego cannot allow a person to believe they will die. It certainly isn’t healthy to dwell on it, and I don’t mean to suggest that we should think about this dire fact on a daily basis. That would suck the joy out of life! No, we can’t dwell on it. We just need to appreciate each day as the gift that it is, and have faith in our future.

“…faith is the assurance of things hoped for, the conviction of things not seen…”
Hebrews 11:1-2

Friends

I made a new friend yesterday. Her name is Cheryl, and she is the first person I’ve ever talked with who also has AL amyloidosis. Cheryl found my blog somewhere (I’ll have to find out where) and contacted me. We have a lot in common besides our dreadful disease. Also, as it turns out, she is an old friend of my doctor at HUP, Dr. Porter. Now how strange is that? I really believe that some people are brought into our lives for a purpose, and Cheryl is definitely one of them. It was so amazing to talk with another woman who knows exactly how I’m feeling (both physically and mentally), what I’m going through now, and what I will have to face in the future. Our medical status is basically the same, and we are going through the same chemo regimens, so we had a lot to talk about. Cheryl is going to begin her stem cell transplant process starting next week, so please say a prayer for my new friend and for her complete and permanent remission.

I also heard from many old (as in long-term, not aged!) friends yesterday. I finally shared my medical condition with my 15 bookclub gal-pals via a group email yesterday. I hadn’t done so yet because I wanted to pretend to be “normal” for as long as possible. But I keep getting sick on Wednesdays--nothing normal about that--and missing bookclub, so I had to ’fess up. (Another confession: a few of them already knew for awhile, due to persistent questioning and my husband's inability to tell white lies.) Since then I have received a tsunami of love and support. This doesn’t surprise me from this group of wonderful women, but it still is heartwarming and very touching. From the bottom of my heart, thank you to all you Ladies of the Lakes. You will get me through this mess, I am sure of it.

In the meantime: Cheryl, you go, girl! You are in my thoughts and prayers.