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Extended Stay

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Today is Tuesday, June 8, and I am still here at St. Joe's. I originally checked in May 26! I don’t think I would have made it this long again if it weren’t for all the drugs that I’m on. I have been bedridden this entire time, and for the most part, completely dependent on others for everything from getting me coffee in the morning to walking me to the bathroom. It is frustrating sometimes not being able to do things on my own, and I feel bad asking the nurses and caregivers for help every time. I have only been outside one time since I have been here. That day was extremely windy, so we didn’t stay outside for too long.

One would think that I am bored being in here for so long without having access to things. Ironically, I feel like I have been really busy! I have Steve here as a caregiver, Debbie Wing visiting from Park City, friends stopping by to say hi, working on the new Web site, which we are aiming to launch on June 19, and odds and ends for the fundraiser. It is all exhausting. I am constantly falling asleep during the day, even when someone is talking to me. I think the drugs play a good part in this. It seems the more monotone the voice, the more apt I am to falling asleep while the person is talking to me, unless the conversation is actually a two-way conversation.

Physical therapy has started coming by to help me. The first day they showed me basic stuff like standing up, sitting down, etc. They had a term that they taught Steve, called, “BLT,” which means no “bending, lifting or turning.” This is to protect my fragile back from fracturing again. Yesterday, they brought me a walker. I almost died when I saw that thing. I never thought I would see the day anytime soon where I would have any of these hideous devices in my possession. I apprehensively held onto the walker and started with the therapist to walk out the door. As we were walking about the hospital floor each step burned through my hips and lower back. I felt like I was walking really funny with my butt way out and my hips swaying side to side with each step I took. We finished one lap around the floor and returned to my room. I felt extremely tight in my hips and mentioned to the therapist I thought that was the reason that I was having a hard time walking. She did a flexibility test and it turned out that I am more flexible than the average person, even in my weakened state! This was good and bad news. The good was that I was still flexible. The bad news was that the pain was then from the cancer.

Today, we went for another walk on the floor. This time I felt more comfortable with the walker. I did ask the therapist if the docs expected me to take it home and use it everyday like the TLSO brace that I have to wear. I just had this horrible image of me walking into Safeway with a walker. I just can’t bear to even think about that. Thankfully, the therapist said that I wasn’t expected to use it. Technically I could walk by myself and this was just here as a crutch in the hospital. Today we ended up walking three laps! I was sore and tired after this walk, but very proud of myself. It’s funny to think that just a little while ago I was proud of myself to run 26.2 miles, and here I am happy to complete about 100 meters walking around the hospital.

The pleural effusion that I have seems to be gone. There is still a little fluid left, however; the X-rays show that there is no new fluid that has accumulated in the past 24 or 48 hours. This is good news! If I did have fluid that built up again, then I would have to probably have some kind of catheter in my lung. We are still waiting on hearing back on the tests of the fluid. The tests will tell us various things about the fluid and why it’s there.

Steve and I had a conference call with the Cancer Treatment Centers of America yesterday. I have an appointment to go there on Friday to check out the facilities and meet some of the people. June 22 I have an appointment to go for three days to do testing, meet doctors, check out the programs and more. I will stay at the hotel checking in June 21 and staying for three nights. I am allowed to have one person stay with me. My dad and sisters will be in town so it will either be one of them or Wes.

One of Steve and I’s main concerns is what are they going to offer besides the complimentary therapy that is going to be different? I already am sold on the fact that the communication and testing seems much more streamlined. It will be nice to get a second opinion at this stage in the game. I also like the fact that I know Molly and Randi that work there, and I feel like they will be looking out for me and making sure that if I decide to go there that my treatment is the best that it can be.

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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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