The Robe

Today is one week since I finished round 2 of chemo. According to my oncologist (and from my experience the first time around) this is about the time side effects start setting in because my numbers are starting to drop more and more. When your blood count numbers are low, that means your immune system is compromised, so you are more susceptible to side effects. For example, this afternoon my extremities (hands, feet, head and nose) got really cold and they just wouldn’t warm up. I bundled up in my awesome neon pink Target robe (thank you Michelle!) and turned up the heat in my room. I wear my robe on my walks and you wouldn’t believe all the compliments I get.

Pink Robe

I got confirmation today that I will be in the hospital (except for a few two-day visits at home) for at least the next 4-6 months. This is basically regardless of what kind of treatment plan my oncologist thinks is best. My two options will be either a bone marrow transplant or I go into remission (which then means I have to do “maintenance chemo”.) We (meaning me, Dave and my mom) all knew that fighting leukemia wasn’t a sprint but a marathon. But, by having Dr. Wareman say the words out loud, she really gave it some substance. Its really making me think. I wasn’t upset by the news. It was just more of an eye opener.

I feel like I have been bored and somewhat mindless the past few days. I know my main goal is to get better in here but it really tests your patience when you are confined to a place and you can’t do as you please. I spend my days pretty much mindless things – reading books, watching tv, playing Candy Crush, doing word finds and going for walks. Of course I work on my blog as well. This blog is an outlet for me and it gives me a purpose. Thank goodness for my mom who comes and is with me the majority of each day and Dave who comes every night after work. But knowing that I am going to have an extended period of time in here, I really feel the need to have something to do that has a purpose or goal.  So if anyone has any brilliant online business ideas that I can do while sitting in my hospital bed, please share!

INEVITABLE CHANGE

I’m starting off on a random note. I just saw on the news (because I have so many tv options at 6 pm on a Friday night) that it is National Taco Day and National Vodka Day. Go out and celebrate! I just know that would give me a stomachache.

Its been an interesting day. It started with my oncologist Dr. Wareman (who is awesome and super smart by the way) said I could go outside for a bit! Do you understand what that means to someone who has been inside a hospital for a month? I was excited. Of course, today was the coolest day of the year so far at 70 degrees. I sucked it up and still took advantage of my opportunity to breathe fresh air. Remind you I live in Las Vegas, so we’ve been in the 80’s and 90’s until today. The air and the sun was absolutely perfect.

I’ve made a couple of dear friends that also have AML. They are further along in the treatment process so they have shown me the ropes around here. They are also my walking buddies. We have our walking route around the nurses station and we chat, share stories, complain about side effects and meds and of course gossip. Believe me, there can be as much drama and gossip with the nurses and patients as there is in high school. Well come on! What else do we have to do?? We are called the “walking pack” by many of the nurses and doctors. I like to think of us as the Walking Warriors because you really need a shaved head to join the group.

The Walking Warriors Me, Ilene, & Annette

The Walking Warriors
Me, Ilene, & Annette

Back to the point of inevitable change. One of our Walking Warriors, Ilene, left us today to go to MD Anderson which is in Texas. It is the largest practice of leukemia experts in the world. I was so happy for her to have the chance to go and she was thrilled to be given the opportunity. The bittersweet is that we have all become such good friends and such great support for each other. It was hard to see her go. However, it represents how we are all in transition and sometimes things must make a change for better things to come along.

Treatments and medications are constantly changing. You have to take each day step-by-step. I started my second round of chemo today. Yesterday and today my blood count numbers were great. But, we know with the chemo my body will go through more changes and my numbers will drop. That is to be expected because we are basically trying to change what my body was doing that made me sick.

I know one thing. The only thing that shouldn’t change whether you are in a hospital, going through something at home or work or have the perfect life: Your Positive Attitude. That will ALWAYS get you through ANYTHING.

And this is my positive attitude picture about AML.

And this is my positive attitude picture about AML.