Medical update 3/26- A bone in fart what?

Hi,
I know that some of you, including family, feel a little bit in the dark about last week in the hospital and what all came out of it and what all happened. To tell you the truth I'm was just as loss for words and as I said before once I put it out here, it's out, it's the truth, and well I guess after 3 sudden nights in the hospital, the death of my beloved blue iPod, and the news, I just had to pretend all was well for a couple of days. That included going to a 20's style fundraiser on Sat., doing a bunch of stuff around the house and outside I had no business doing but it made me feel good, and having company over that brought dinner and eating outside WITHOUT a stupid mask on. Watched Evalyn grow and learn right before my eyes and have everyone talk about how wonderful she is. Well, I have skipped the last two Monday's in my mind, so did Poppa, thinking it was a different day, well Monday hit hard today and I have a lot to deal with and so what if I bought two ferns I had no business touching a Lowe's. I got my Lola turtle back, HA.  So there. THERE.

Whole truth right? I'm literally crying right now because I'm just so overwhelmed at the unknown and just when I think we know what we are going to do, something happens and it changes. After the relapse, we found out that I could get the pontatinib (oral chemo from FDA)  and I was doing great, losing weight, my meds were decreasing, then BAM, rash every where, GVHD in eyes, increase in meds, molting, but still hopeful. We have been playing lab rat to figure out if the rash was GVHD or the oral chemo. Well, it's looking toward more of the oral chemo, which when I have asked well what does it matter if it is oral chemo I have to take it to save my life.... Dr. Khoury... mumbled something about maybe not. WHAT? Then BAM my blood sugar is too high and I have to prick myself and give insulin and we are not sure if this is going away or not.

As soon as I'm about to sit down and literally write myself out a med schedule for myself, Evalyn (iron,probiotics, and floride), the dogs (yogart,dental, and a shot for Chloe once a week), remind Jonathan to take his stuff to increase immune system, and the baby sitting schedules, doctors, exercise, FUN plans, etc etc. ...... I have two of the worse bone nights I have had since radiation and the BMT. Shaking, crying, calling my Poppa at 6 am crying pain. Now, I could have went to the hospital and paid what ever my expensive ER co pay is to get some IV pain meds, but i knew it would be over it at least 5-6 hours and I wanted to keep that money. Not saying I will do the same next time.

Emory calls last Tuesday and says they want me to be admitted for the night to give me some pain relief and sleep and do some tests. Code Red called and everyone pulled together and Evalyn was taken care of... Jonathan missed a lot of work, no pay there, but lots of understand caring people. Mom got off work a day early. Dr. Khoury was out of town for 2 days, that should have given me warning right there. I only took a minimal of stuff, one night right? I didn't get any pain medication till 11:30 that night and I was there at 4pm. Luckily I was not in that much pain, relatively speaking, or believe me, I would have. It was nice to see some of my friends on 6E, great staff there, and they knew me as soon as they saw the smiley face on my yellow mask. Mom and I tried to watch a movie, I kept falling asleep, she said it was dumb, so we turned it off. As you can read in the last blog, it was a lot of waiting and a lot of me taking up a room that someone probably needed.

I finally got the results of the MRI and it was what I thought they were test for. I have Avascular Necrosis. Now, I don't know if that is what I also have in my feet, hands, arms, and back when I have bone pain because in 3 days I only had 2 tests and a lot of take out food. AN is a process where the part of the bone involved ina joint loses adequate blood flow, causing the area of bone to break down. No wonder I couldn't get up off the floor without a major production. The doctor on call at Emory said there was not a way to back track, but there would be things to do to slow the process down. Joint replacement would probably be needed in the future. I'm not going to believe the whole no back track thing, There has to be something. What caused this? They say long term steroid use. I say steroids, plus radiation, plus chemo, plus tons of meds, and cancer ......SUCK.

At that point, we were waiting on what I was going to do to control the pain. We just kept waiting... my wonderful nurse Carmen was trying to get me out of there. A friend Matt showed up and we decided to break out..... I mean we broke out.... off campus to a pizza place, called everybodys. I bet you have never seen an admitted patient with an IV still in the arm, drinking a bear at lunch?? Well that was my breaking point. We got back to the room and my brother Scott who has autism came to visit me, no warning. He was fine but I had to pack up and keep getting him to lower his voice about sodas and choc easter egg bunnies because the walls are pretty thin and I was about to blow a gadget that they have not gotten a plan together. Good god, you gave me a BMT people can you not control this horrible pain that hits me in the middle of the night? Give me a shot to give myself, I'm already giving myself at least 3 a day with the insulin They offered time extended release morphine to take everyday. I took the scrip, but not planning on using it at this point. I'm taking enough everyday. My step dad Frank came to pick me up and I went home to a loving family and my baby girl asking ME to put her to bed..... then I tried to forget the whole thing. Now it's Monday, now I have to figure out what  the next step is, well, I guess we, there are a lot of you all in this with me. By the grace of God I made it to yoga this morning, only because I know that It will help me. As far as the other exercises, I'm not sure if I can do those yet or not. There is always hope.