So there has been a lot of publicity around the ice bucket challenges taking place in the name of ALS better known as Lou Gerhig’s Disease. These challenges erupted nationwide in support of this devastating illness. The ICE bucket challenges provided amusement for those partaking and those onlooking, but more importantly it helped raise awareness and much needed funds for research to some day end this debilitating disease. I applaud all those who took part or who donated. And then I started thinking about the number of diseases that plague individuals in this country and the lack of awareness or support for them. You may hear of charity walks for Cancer, Alzheimer’s, MS, Heart Disease, etc., but how much do we really pay attention to them unless we have somehow been affected? I have participated in RELAY for LIFE for years and was always touched by the survivor’s lap and luminaria, but when I saw my own name on one of the bags this past year (created by an amazing former student) it really hit home. I have a new appreciation for people afflicted with any disease, those that are visible and those that go hidden from public view. I think it is so important to raise awareness and create a culture of empathy for those enduring ALS, MS, cancer, Alzheimer’s, mental illness (depression, anxiety, etc), auto immune diseases, etc.
Prior to being diagnosed, I had never really heard of Hodgkin’s lymphoma and now I am the proud owner of an awareness t-shirt and multiple bracelets (all of which a percentage of the price goes to funding research). I didn’t know that the ribbon color for Lymphomas were lime green or that Hodgkin’s patients wore purple to signify their type. I had no clue that September was Lymphoma awareness month. I know now, but more importantly what I know is how Hodgkin’s changed me personally and how it continues to do so. It changed my priorities and my perspective on life. I appreciate things more even when I have to face challenges like my new chemo regiment – ICE.
ICE is a salvage chemo used prior to stem cell transplants and it is made up of a three drug cocktail that packs a punch. By day three of ICE, I came home feeling like I had several cocktails. ICE was very different from my regular ABVD routine. Day one, you get one of the drugs (which has can array of fun side effects, but then again I guess they all do) in an hour infusion. I get to do this first day in the comfort of my chair with my Julie or Susan. But day two and three look very different with ICE because the isfosfamide is a 24 hour infusion and requires you to be inpatient at the hospital. So on day two and three you get two drugs instead of one and win a night in the hospital. I was definitely skeptical at first, because I have never been overnight in a hospital that I can remember (my last overnighter was when I was 2). So I packed multiple getaway bags to keep myself occupied and checked in right on schedule. Thankfully, check out time would be the next day.
I was familiar with my Hillcrest girls and wasn’t sure what to expect. Luckily, I ended up with Sarah and awesome IV nurse who definitely made my stay. We had a lot of fun despite the fact that she had to administer my chemo and check my blood pressure every 15 minutes for one of the hour infusions. I appreciate anyone who is full of sass and a great personality, we were well matched and honestly she made it fun. We spent a good chunk of my stay laughing about something or other and she even gave Steph’s husband a hard time when they were there to visit, now that’s a girl after my own heart since I love to harass Bryan (even though he’s a great guy). My friends visited to help me pass the time. Tammy had the night shift so brought dinner, shrimp cocktail and chicken parm – so obviously foods most people eat while receiving chemo. They are in my case, my tastebuds are still very much in tact and so is my appetite. My dad visited with iced coffee and donuts for breakfast and by lunch time we were having a pizza party. At one point I had four visitors at once. No wonder why one of the doctors came in accusatory looking for the sick person. I imagine they don’t necessarily get many patients enjoying their stay.
I have to admit I was surprised that I didn’t get sick at all, but I listened to the advice of other ICErs who had this experience used preventatives. Z seemed a little surprised too when he came to visit me in the AM and I was ‘bright eyed and bushy tailed’ at 6:00 am. I have been fortunate, but I respect the process and the drugs and acknowledge that ICE round 2 may not go as smoothly. And truthfully the mack truck feeling I had with ABVD was nothing compared to ICE. With ICE it felt like the truck hit me, backed up and ran me over a few times. But it only lasted for about 12 hours, so all in all I was lucky and the initial ICE challenge was a success with the help of a kickass IV nurse and my friends.