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Tuesday, March 22, 2011

My heros

Sometimes when I think about how long this journey has been, I get so sad and depressed. I can't believe I'm still in this dark place where I wont know how I feel from one day to the next and it gets harder and harder to remember my so-called "normal" life...anything "pre-cancer".

Last week I started the new therapy treatment, an immunutherapy called Rituxan and a chemotherapy called Bendamustine. This process will last for 6 weeks and at that point I'll be reevaluated to see where radiation fits in. I'm grateful for every day that I'm not in the hospital, because if I had stayed with my old plan, I would be writing from a hospital bed right now, not the comfort of my own home. I hold on to that thought because these last few days have been rough. I also have to take shot called Neulasta which increases the white blood cells that are lost through the other therapies, but it can also cause extreme bone pain--kind of like you had the worst boot camp workout and every muscle in your body is sore. So Sunday I literally couldn't get out of the bed, I was so sore. I think I could have handled that because I've been sore before, but on top of that, I had horrible nausea. I haven't had to deal with a lot of nausea throughout my ordeal and I consider myself lucky because when I do feel bad, I usually eat something greasy and I feel better. But my old "hungover from alchol" tricks didnt quite work this time. There is no relief, just constant yucky in my tummy. I didn't even want to talk to Ross or my parents who called because I couldn't explain how gross and sick I felt. It just made me feel worse to talk about it. The anti nausea meds I took felt like a joke, a placebo for those who really feel like they will work, and thus this weekend I felt myself slip in a downward spiral of "here I am again", hanging over a toilet bowel and crying, praying that I would throw up just so I would feel better. It's hard because the mind and body forget. I hadn't felt this bad in a while and it just hit me all at once and made me so upset. I told myself that I've been through worse and I can get through this, but its hard when sleep is the only thing that makes the pain go away.

So I stayed home from work to rest although I complain to everyone that resting never makes me feel better. And then today I dragged myself to work in an effort to push through the pain and not fall down the slippery slope of sickness. I was definitely a little shaky, but got better as the day went on and spoke to my nurse about getting a stronger anti nausea med which *fingers crossed* has seemed to work better. Then towards the end of the day I got a great email from my best friend Dani with pictures from The Big Climb in conjunction with the Leukemia & Lymphoma Society that she did with her husband and little girl Payton (my future flower girl!) in my honor on Seattle, WA. It was such an honor to see that they did something so great in my honor and I can't thank them enough for being my heros...Kwame, Danielle's husband, climbed 69 flights of stairs in 13 minutes! Talk about inspiring. I never thought my name would be on a charity t-shirt, so its a strange mix of sadness and amazement, but when I see Payton with her "Team Auntie Morgan" shirt on, I can't help but smile.

Tuesday, March 8, 2011

A New Direction

So my plan has taken a turn. After gradually trying to make myself accept the transplant, the hospital stay and all that it entails, I decided to get a 2nd opinion just for kicks. A friend recommended her doctor and then another friend I met on Facebook recommended him as well, so I figured it couldn't hurt to see what this doctor had to say. I will say that I was a little nervous because I had another 2nd opinion last year and all it did was confuse me, so I didn't want to be put in that position again. However, I heard great things about this doctor, so I forged ahead.

I had to wait like 3 hrs to see him, but as soon as he walked in the door I liked him. He told me that he doesn't usually like to do another transplant within a year of the first transplant because they're so toxic. Instead he recommended a combo of 3 different therapies, one being radiation, which I have never had. He seemed confident that this could be the key to beating my stubborn, resistant disease. I had heard that he thinks outside the box and looks for new ways to beat the disease. I didn't even know what to do as I listened to him. I felt so overwhelmed, so in disbelieve that there could be another option, that I started to cry. He hugged my shoulder and said it would be ok, and you know what? I believed him. The fact is, no one has a crystal ball, no one knows how this treatment will really work, but I felt something in my gut that said I had to try.

The next day I went back to my other doctor and explained to him this new treatment, he said it could work and shrink the disease but it could not, but at the end of the day the decision was up to me, whether to go forward with the transplant or try this new treatment. The final straw was when my current doctor said that I did have more disease than he would like me to have going into a transplant and it made it feel like I needed to try something else to kill this thing. Even though I hardly feel qualified to make this life altering decision, it was all on me. So I decided to go with the new doctor. First up, I have to have another biopsy to determine if my disease is CD20 positive, this is a type of protein that is present in some lymphomas and make it more resistant to standard chemo. Then my mom is coming to town and we'll meet with my new doctor again to discuss the treatment. It's scary but exciting to be on this new path. I really believe this could be a turning point for me.

This weekend I'm going home to have my bridal shower, finally a ray of sunshine in this storm I've been in. I stopped getting excited about it after everything went down with the bad pet scan, but I decided to get happy about it again. I think it's time to have a little fun.