Sooooo….my beautiful peeps are asking when I’ll blog again. Let’s call this one an eclectic mix of anecdotes and thankful thoughts and little truths and just mash it all up into what, hopefully, turns out as a pleasant read.
I just completed my fourth round of chemo. There’s an ebb and flow which is fairly predictable. We keep changing up the treatment drugs and when to take them in order to get the best result. So if you are a person who finds yourself on this page of life someday, please know that it’s predictable and unpredictable, both. The joke is that by the time you get the right combo of drugs going at the appropriate time, your chemo ends. I can see some truth there. My daughter, who as most of you know, is a student doctor, has been the most honest with me. She gets me. And when my oncologist and her PA are trying to add this, take that sooner, try one of these, etc…my daughter says, go ahead and try all that, but Mom, I think you need to accept that this is what chemo does and you’ll face basically the same set of symptoms each time and you need to just DEAL with it and press on. I’ve found that to be the best advice. I mean that is what it’s all about. The poison is the cure, and it sucks, but it works. So, head down, be strong, accept the things you can not change….all while being optimistic, hopeful and faith driven. Easy, peasy? Right?
Another thing that has been particularly helpful to me, aside from all the friends supporting and cheering me on, which has been truly humbling and amazing, is one particular friend who reached out to me during this last round of chemo. I have not seen her since High School, but we are facebook friends. She is a survivor and I won’t call her by name to protect her privacy, but “A”, you know this is for you. She has shared her story, her photos, her truth and her happy ending with me via private messenger. She has made me feel less alone in my struggle, because she struggled too. She “gets” it. There’s something about having your feelings truly understood by someone who has been where you are. There are days when you feel like, why am I such a weakling? I should not feel this sick. But to know that others have felt this sick and it does conclude and you do get on with life, well, that just makes it easier to have courage and faith. So, my goal is to be that person to those who come after me. Writing this blog is my cancer legacy and I hope to spend the rest of my LOOOONG life helping others like me.
For those who don’t live with me, I’ll share some sad and funny truths…mostly I want you laugh with me, so hopefully they’re more funny than sad. As I have more than alluded to in these pages, chemo sucks. There’s at lease one week of every three where I am symptomatic and the symptoms are just nasty. Fatigue, achy muscles, achy bones, crazy heartburn, nausea, vomiting, intestinal cramping that’s only treatable with prescription pain killers, diarrhea that keeps me home bound, chemo acne on my face, head and back, blurry vision…The list is long. Week three is the best week and it gets better every day. So, by the time I go back for the next infusion, I’m generally energetic, smiling, dressed cute, make up on and eyelashes glued in place. They tell me how great I look, not like a cancer victim at all. Nurses and patients comment on my stylish head scarfs and they marvel at my attitude. Go me! Then, three days later, when my white blood count bottoms out and I feel like I’ve been hit by a truck, I go back for fluids. On this day, I need a driver, I barely can pull on sweats and balance a scarf or hat on my head. Make up is forgotten because I don’t f*ing care. I drag my ass in there and crawl into the chemo bed or chair, whatever is available and closest. But, I always wear my pink, kick cancers ass, tennies. I’ve discovered that this is a good thing, because, more then once, it’s been my identifier. Last chemo round, I was sitting there talking with my nurse du jour, who had already identified me by my chart and was trying really hard not to tell me how crappy I looked, when another nurse, who was my chemo infuser three days prior came by to chat with the current nurse. She completely ignored me. Until she was about to walk away. Suddenly she saw my shoes, which made her do a double take. “Susan! I didn’t recognize you until I saw your shoes.” she exclaimed. “I know. This is Friday Susan. She differs greatly from Tuesday Susan.”, I responded. “Oh honey,” she said, “I’m SO sorry. You look like shit.” I am delighted that these gals get me. Yes, I have a sense of humor and I DO look like shit today. And thanks for calling it to my attention. I mean, really, thanks. I’m glad you see me as I am. The next time I’m back, you’ll tell me how awesome I look, and you’ll mean it.
I also leave after treatment on chemo Tuesdays with a little thing stuck to the back of my arm which probably has a fancy medical name, but it’s nickname is “the bug”. The bug has medicine in it called Neulasta. It’s supposed to be injected 27 hours after chemo and it tells your white blood cells to kick into gear and start growing fast because the chemo is killing them fast. It’s a neat little gadget. Once it gives you the injection, you just pull it off and throw it away. So, last night I was cooking dinner and Rod came and sat down at the bar. He was wanting to talk over some stuff while I tootled around the kitchen. He had his phone and Ipad on the bar and I had my phone and Jack’s laptop was there. Lots of electronic stuff. Suddenly, I heard a beeping noise. Beep, Beep, Beep. I didn’t know which electronic was making it, but it didn’t sound familiar and Rod didn’t know either. Maybe the fridge? Microwave? Don’t know. So we kept on truckin. A few minutes later, I heard a clicking sound. It was faint, but not so faint I couldn’t hear it. Something is wrong in this kitchen, I said. There’s a clicking or a dripping sound. Rod listened. Yep, he heard it. I followed my ear to the fridge. It’s here I said! But, no…maybe behind me. The electronic pressure cooker? Yep! Nah…more to the right. The coffee maker? Still not quite right. Under the sink? The microwave, the oven, the dishwasher, the electronic gadgets….It seemed like I was there and then it was just to my right and/or maybe behind me. Rod followed me around and felt the same sense of hearing it, but not being able to pinpoint it. Then Jack came in. I explained the situation and asked for his help. He followed me around the kitchen for about 30 seconds and then he exclaimed….Mom, it’s YOU that’s clicking!!! Immediately, I yelled; “OH MY GOSH! IT’S MY BUG!” I had forgotten that the bug beeps (thanks chemo brain) and then it takes one hour to put in the medicine and, during that time, it clicks. My husband looked at me and said, well Dear, you just spent the last half hour chasing your tail. Yep. Welcome to my world.
Daily, I find that I am reminded of what’s important in life. I have changed my perspective on what beauty is and what friendship means. I am striving to be more patient and understanding of what others are going through. I’ll admit, the steroids don’t help. Some days, I feel impatient and crabby and you really don’t want to put me behind the wheel of the car, because I’ve discovered “roid rage” along with chemo brain. But, I will say this, as I draw on eyebrows in the morning and glue on eye lashes and adjust my scarf or wig, I look in the mirror and I say; YOU look mahvelous! Because I can. Because I’m alive. Because there’s a cure. I don’t have to be the 28 year old me. I am currently sick and tired and getting older and fighting cancer, but I AM alive, and I AM loved, and with a little help from the make up department, I DO look beautiful. Susan beautiful. It’s beautiful to be alive, beautiful. Don’t ever forget that friends. Cut yourselves some slack. Worry about ten pounds another day. LIVE today and love every day! Love yourself the most. That’s my advice and I’m livin’ it.
Thanks for coming back to read my blog. I’ll post more soon.