"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."


Day -7 and The squeaky wheel...

aka patient from hell really does get the grease. The stc floors are 11 and 12 here at the hospital. The lymphoma floor is 6. I've never been on the lymphoma floor while having treatment in the past due to the overcrowding issues here. This time around I figured we had to be on the sct floor because it was such an intense procedure. So when I got the call from admissions that my room was ready but it was on 12, I passed it up. 12 is reserved for the allo patients, people getting stem cells from donors. That is considered a protective environment floor and I didn't feel comfortable going there. A few hours later, admissions called again saying my room was ready. Since I had told them I was waiting for a room on 11, I assumed it was on 11. You know what they say about assuming. Come to find out I was assigned to floor 10. I had been on 10 before, as my second treatment was there. It's the melanoma and sarcoma floor. It's also the floor where I had my reaction to etoposide. I don't have good feelings about the floor. The rooms are smaller and there is no bed for visitors. So I am pretty upset that I didn't get on 11 after being told I would. Normally, I am so not the squeaky wheel but this time was different. We're talking about my life here. I told the nurses last night I would not be getting any treatments on that floor. And since I wasn't supposed to be starting chemo until today, I asked not to be disturbed during the night. I ended up getting some much needed sleep. Back to floor 10. I just didn't feel comfortable having nurses take care of me when they've never dealt with the chemo drugs I would be taking. I asked about side affects of the drugs and they didn't know. Also, one of the nurse assistants didn't even know I was there for a sct! I wasn't putting my life in their hands just because they didn't have a room for me. The sct floor deals with these drugs everyday and they know the common reactions and are ready with the right meds to treat you with asap. This is MD Anderson, come on! Last night my nurse ended up telling me all the beds were full and that there were 25 people ahead of me to get in on 11. Who knew so many were getting scts?? So today I didn't let up. Anyone that entered my room, whether it be nurses, nurse assistants or doctors, I asked how it was going finding me a room. I also called my sct doctor and left a vm to see if she could help me get to the floor fast. My goal was to get on 11 and I didn't care how much a pita I was. And you know what? It worked. I got a call from the doctor on call and he said we needed to start treatment today or I would go home. Apparently some sct patients were being delayed due to the bed shortage. So I said ok, I'll start on 10 but I wanted to be sure I was transferred at sometime...preferrably sooner than later. Good thing was that my chemo drug today was short, only a 2 hour bag. This was about 1pm today. At about 4pm I got a call saying I had a room on 11!! WOOHOO! Persistence pays off!

So now I'm settled in and feeling more comfortable knowing I am being cared for by the right team. I am already having some side affects from the chemo, a dull headache and hot flashes. In the past, I got a headache a few times and it came about two days after treatment. So it surprised me that it came so soon. The nurse said if I need any pain meds just let her know. I'm such a sucker for pain, though. Pain=Life. Right???

So, my schedule is like this. Tomorrow through Sunday (the 28th) I get two drugs 24 hrs a day, one of which is etoposide. I can't remember the other one but it starts with A. I'm doing BEAM, I got the B part today. A and E for four days and then ending it Monday with M, Melphalan. That is the nasty one I heard. I know I can tolerate etoposide, and I heard the A is easy as well. Then on the 7th day (the 31st!) is when I should get my stem cells put back in me...they say it's your new birthday = Happy Birthday to me! My life is always changing around Halloween. I met Gabriel on Halloween and we had Olivia around Halloween. How nice to have another life changing event to occur on that day as well. I wonder if we'll be getting any candy here that day? :)

I'm going to try to update this blog everyday. I want something to go back and read to see how it went and how I got through it. We'll see how it goes.


No comments: