Hospital Daze

I hope you never have to spend a week in the hospital with tubes stuck in your side. It was one of the most humbling things that has ever happened to me. Having someone help you go to the bathroom, help you take a shower and even brush your teeth is not easy. I am a very independent person and hate asking for help for anything, so when I had to push the damn nurses button to be able to drag my millions of tubes and IV pole to the bathroom, I hated it. I had this box attached to my chest tubes that constantly bubbled like a "babbling brook", or at least thats what I called it. It was maddening and at the same time comforting. It was about two feet high and a foot across and it collected all of the bodily fluids coming out of my lung. It was a curse during the day because I had to take it everywhere AND drag around an IV pole. It had a little handle for easy carrying. It was comforting because at night it was the only sound in my room, a bubbling sound like a quiet stream or brook. I fell asleep listening to it bubble and flow. I convinced myself it was like falling asleep near a beautiful stream, so I listened, and it would put me to sleep. I think I did ok, mentally, while I was there. The only day I had a "mental" problem was Sunday. I felt depressed that morning and was thinking too much about my situation. They had used and abused the veins in my left arm and I wasn't too keen on letting anyone take more blood. I had been promised they would start taking it from my port only. A little Asian woman came in the room with the familiar labs cart and tried to take my blood. I told her no, stop, someone was coming to take blood from my port, but I think she didn't understand what I was saying. She mumbled something to me about my blood was needed "stat" and she kept trying to find a vein. I just freaked and started crying. My greatest fear is the loss of control of my life. I always felt like I could handle it if I had control over things, even something as small as whether or not blood would be taken from me. It all kind of just came rushing to my brain at once. Loss of control, feeling tired of being sick and just damn tired of being trapped in a hospital stuck to these tubes and IV's. I was bawling at this lady. Luckily an IV team member came at that moment to fix my port, and I didn't have to have blood drawn from my arm. But I was weepy all day. I hate weepy people. It was just a hard day. The hardest part was thinking, I hope this isn't a taste of what's to come. If it is, I'll be crying a lot more. It's hard for me because I am not a crier, and I don't want others to see me cry. I was so glad when I got my release from that place. It made me confront feelings that I have been tring to avoid for a good year and a half. I hope I don't have to do it again...for a long time.

I know it's been a long time........

Wow. I haven't posted since June? I can't believe it. I'm sorry. I spent most of this summer suffering from the chemo drugs. I was too sick and exhausted most of the time to even think about getting on and typing. At one point I was so tired I could barely type for more than a few minutes, so I decided to stop answering my email for a while. I wish I had better news. I wish I could tell you that the clinical trial was a great success and that I have conquered it and whipped it into submission. I wish I could say that. It just kpet it at bay for about 5 months. It didn't grow, but it also didn't shrink. The only thing that saw great improvement was my skin. It almost completely cleared up the skin cancer portion, it looked great. But, within a week of stopping the drugs, it started to grow again, quickly. It's been about a month since I have been off the drugs and its gone wild and has completely covered the right side of my chest. It's back with a vengeance. I haven't started with a new drug yet because my blood levels haven't been normal enough yet. It turns out, if I had continued with the drugs my body would have broken down soon anyway. That same week my hemocrit levels dropped, I had to have a blood transfusion, then my platelets dropped dangerously low and I had to have a platelet transfusion too. Ever since then it's been a roller coaster ride. The blood levels went up and down. On the 12th I went in to have a Pleuridesis (have fluid taken out of my lung sac--permanently). It was more of a major surgery than I thought it would be and I ended up spending a week in the hospital. I'll type more about that sometime. It was quite an experience. So now here I am recovering from that. I am going home to NY on Friday and I feel like I am going to miss my sister so much. I feel bad because I have put her through so much stress and anxiety in the past month. She is glad I gave her a chance to help me, but I feel like she definitely needs a break from this. It's tough to live with every day. My husband misses me and I miss him too. I can't wait to meet the little kitten he has taken in. : ) I already have a plan in place, thanks to a visit while I was in the hospital from a breast cancer researcher who gave me some hope about a new drug, and I have to put everything in action this next week. I have to make appointments, pack clothes and take care of details. Most of all I have to get better so I can get back on a chemo drug. Everyday that I am not taking something to kick cancer's ass is making me more nervous.