October was a pretty good month.
Not a lot has happened on the medical front during October. My steroids have been tapered each week so now I'm down to 15mg/day. When I left the hospital in July after my 3 weeks of hell, I was on 180mg/day of Prednisone, a steroid with a "normal" dosage of 7.5mg/day. So, coming down from 180mg to 15mg is a big deal. If all goes well and I continue to be free of any infections or symptoms of GVHD, we'll be able to continue tapering the steroid. On Tuesday (tomorrow), we would drop down to 10mg/day, and then the following week, we'd go off of Prednisone and switch to hydrocortisone, which is something my body should be making on its own. After being off of the steroids, we would very, very gradually begin tapering my Cyclosporine (or "Cyclo"), which is the immunosuppressive drug I'm on right now. When I say very gradually, I mean about once every three months we would drop it down by 25mg/day. I'm currently taking 150mg in the morning and 125mg at night, so only tapering by about 25mg/day every few months, you can see it'll take a while before I'd be completely off of the Cyclo. We need to go slowly with the tapering of Cyclo because with every taper, my risk of GVHD increases. With decreased levels of the immunosuppressive drug in my body, the immune system I will acquire from my donor will be more able to attack my body's systems like my gut, bowels, skin, liver, eyes, etc. It just depends on whether or not my new immune system will view my other systems as "foreign" because it's used to my donor's body's systems. When I was in the hospital following my second transplant, I did experience some minor GVHD of the gut, which just makes me throw up a lot. I HATE throwing up, so I hope I can avoid more of that down the road. Gratefully, GVHD of the gut isn't life-threatening...just an annoyance.
The swelling and water retention I've gotten from the steroids continues, though it's mostly in my face, neck and torso now, and not so much in my legs, ankles and feet like before. every once in a while, I'll have a day when my ankles will decide to swell a little, but it's nothing like before. Noelle says the swelling in my head, neck and torso are coming down a little, but I don't see/feel it. I still look like someone stuck a bicycle pump up my nose and didn't know when to stop pumping. Oh well. It's only cosmetic. One of our favorite PAs at LDSH says the swelling will decrease even more slowly than it came on as we taper and ultimately remove the steroids altogether. Also, as we taper the Prednisone, there's some fatigue that comes with it. I think I've begun to exerience that, as this week I've been falling asleep on the couch or in bed in the mid-mornings. I wake up tired, and by around 9 or 10, I have trouble keeping my eyes open. I think it'll just take my body a while to get used to the lack of steroids.
Gratefully, with the tapering of the steroids, I've found it a little easier to keep my temper under control. That was a big issue in July and August, when my steroid levels were at their highest. They can cause undue levels of aggression and boy, did I feel it. Noelle had to put me in time out a few times. With some medication and counseling to go along with the tapering of the steroids, though, it's been much more under control of late.
I've been in the mood for Christmas for the past few weeks. I think it's because I missed out on Christmas last year. I was dealing with the onset of pneumonia and didn't feel very well. I was also going through chemotherapy last December, and not feeling like myself. Although I wasn't experiencing the worst symptoms chemo patients have to go through, I was fatigued, food didn't taste good, and I was pretty weak, so I couldn't help with all of the activities and decorating and cooking and cleaning like I would have wanted to. Gratefully, this year should be different. I've been listening to Christmas music a couple times a week for the past few weeks...during October! I've never been this ready for the Christmas season this early.
The Light the Night walk on the 12th of October was a really neat event. We look forward to being a part of it every year. My team was able to raise close to $1,200 to go towards leukemia and lymphoma research. We hope to be able to generate much more in donations in coming years. As for the event, there was food provided by Texas Roadhouse, games and activities for the kids and live music for everyone. The event is called Light the Night because everyone who raises $100 or more is given a lighted balloon to carry as they do the walk. The balloons are in three different colors: red for supporters of blood cancer patients, white for survivors, and yellow in remembrance of someone who has lost their battle with blood cancer. As I walked with my white balloon, and my family surrounded me with their red ones, I was overwhelmed to see all the yellow balloons around us. It was really humbling and sad. It gave me this immense feeling of gratitude that my family wasn't there - without me - holding yellow balloons.
I received my "working diagnosis" of CLL (Chronic Lymphocitic Leukemia) 13 months ago today, and my official diagnosis of MM/PCL (Multiple Myeloma/Plasma Cell Leukemia) 11 days later. The statistics I found over the first few weeks weren't encouraging. Less than 1/2 of PCL patients make it a year beyond diagnosis. I knew I had to ignore the published data and become my own statistic. God is a God of miracles. As my family and I have partnered with Him over the last year with lots of fasting and prayers, we have seen miracle after miracle. I attribute a lot of that also to the hundreds of prayers that have been offered in behalf of me and my family by so many others every day since word got out last October. My life could have been represented last month by a bunch of yellow balloons, but God has seen fit to rescue me from this disease and grant me some additional time on this earth before moving on. I'm unspeakably grateful to Him for that. Whatever He wants or needs me to do with the remainder of my life, I'll do it. I owe Him that. I just hope I'll be able to stay enough in tune with the Holy Spirit that I will always know His will for me.
Well, that's about it for now. It's funny sometimes when I sit down to blog and feel like I don't have much to say, and then the post ends up being several paragraphs long. Those who know me well won't be surprised by that. =0)
