Day -1

Hello All,
Today was a much, much, much better day.
Up until yesterday, I had thought I was getting off pretty easy with the chemo. But yesterday was pretty much a terrible, horrible, no good, very bad day.
I had been told the ATG could be pretty intense, but the headache I experienced wasn't on any of the side effects lists. Here's what my info said about ATG:
"ATG may cause bleeding, fever, hives, shaking, and/or chills. It may cause muscle aches, joint aches, kidney damage, liver damage, and/or fluid leakage into tissues such as the lung, causing shortness of breath. It may also cause severe allergic reactions which can cause trouble breathing and/or changes in blood pressure. ATG may cause a decrease in blood platelet counts, which may increase the risk of serious bleeding. It may cause fainting, itching, rash, facial swelling, lymph node swelling, diarrhea, and/or nerve pain. it may cause an increased risk of developing a specific type of lymph cancer."
I was premedicated with Benadryl and Zofran in the morning, as usual, and then did the Etoposide and Cytarabine. I was supposed to get a blood transfusion because my hemoglobin was really low, but there was some delay, so I went right into the ATG in the early afternoon instead. Almost immediately after the ATG was started, I started to get a headache. I got up to go to the restroom, and noticed my spasticity in my legs was noticeably worse. By the time I got back into the bed, a minute or two later, my headache had intensified, and a minute later, I was in agony. I don't know that I have *ever* experienced pain like that. Ben immediately got the nurses in my room, and they took my vitals which showed high blood pressure (which for me is really weird since I have such low blood pressure normally), and my heart racing. They called the doctor and then had me take Darvon and some other stuff, it is pretty hazy now. I somehow swallowed the medication, but then all I could do was hold a pillow over my face and cry. The nurses stopped the ATG for a while and slowly the headache started to diminish. I think they gave me more benadryl and more steroids, and then slowly started up the ATG again. I was finally able to sleep, and finished up the ATG. When I woke up, I thought the worst was behind me. I ordered dinner, but by the time it got up to my room, I started to develop a fever and chills. Pretty soon I was shaking so hard I could hardly talk, let alone eat. We called the nurses again, and they piled me up with warm blankets and started me on Demerol. That eventually helped calm the shakes, but then my fever kept going up, and up, and up.
My MS is very heat sensitive, which I've known for a while. But I guess my body has never gotten that hot before. My fever eventually peaked out at 104 point something which I think is pretty high for an adult. My MS symptoms basically went through the roof. I couldn't move at all from about the ribs down, not even a toe. I had double vision and couldn't focus on anything, and even my arms which are largely unaffected, were really weak and my hands were numb. It was really frightening because it was getting worse by the minute, and my fever wasn't going down. The nurses took off all the warm blankets and instead put ice packs around my head, neck, and belly, and got a cooling blanket to try and get the fever down. There were doctors and nurses in my room until about 1 AM when the fever finally started to come down. The on-call neurologist came in and checked me out, did all the neurological assessments, but by that time I was starting to get some movement back (hey! I can move my big toe!), and the panic level was decreasing.
I have to say the night nurses were amazing. One of the nurses, I think her name is Leah, was in my room almost continuously, and offered to pray for me. She gave the most heartfelt prayer, with her hands on my head. She was really comforting and I was so touched.
Anyway, by the time I woke up this morning, the fever was gone, and I regained nearly all the function I lost the night before, and throughout the day I believe I have gone back to baseline. So as scary as it all was, it is a relief to know that the fever-induced exacerbation really is just temporary.
Today was my last day of chemo. I got a unit of blood in the morning, which was fine, and then Melphalan later on in the morning, and ATG again in the afternoon. Here's what my info says about Melphalan:
"Melphalan may cause nausea, vomiting, and loss of appetite, diarrhea, sterility, and/or disruption of menstruation in females. Melphalan may cause mouth sores, skin rash, and/or hair loss. It may cause injury to the kidneys, lungs, heart, and/or liver. It may cause allergic reactions, including itching, hives, flushing, wheezing, chest tightness, fever, chills, muscle stiffening, breathing problems, and/or loss of appetite. It may cause heart failure, bleeding from the bladder, and/or seizures. It may increase your risk of developing a second cancer."
It sounded scary, but it was really fine. This is the drug that causes mucositis (lesions in the mouth and mucosal lining of the entire digestive tract), so they had me chew ice for an hour, a little before and after the actual infusion. I guess that causes the blood vessels in the mouth to shrink and minimize the mouth sores later on down the line. They had me dosed up on Zofran again, and I felt just fine.
I was really nervous about the second round of ATG this afternoon. The doctors told me that usually the second dose is a lot better tolerated than the first, but they were taking no chances. They premedicated me with steroids, benadryl, and tylenol, then ran the infusion over twice the amount of time, with another dose of benadryl and steroids halfway through. And it was fine! No fever! No headache! I was soooo relieved. Even though I knew any reaction I had would be temporary, I just really didn't want to experience that again!
So now I am officially done with chemo. Tomorrow is transplant day. My blood counts will continue to decrease for the next few days, and will bottom out in 4 or 5 days. I've been warned that I probably won't feel too great as this happens, but at least I know the doctors will treat any fevers and stuff really aggressively with me. I've still got my hair, but I've been told that will start falling out 7-10 days after the chemo, so I guess I've got a few more days. I've been on so much steroids since I've been here (and before-- prednisone for the stem cell mobilization), my face is starting to swell which I hate. But if I learned anything last night, it is that I'm doing all of this for a reason. I know if I did not go through with this transplant, I would be where I was last night probably within a year, and that is something I just can't contemplate. So I have absolutely no regrets at this stage of the game.
Ok, enough of this long drama for tonight. Ben has been a trooper. It's probably a weird combination of boredom, punctuated by too much excitement. He's been waiting on me hand and foot which has been incredibly helpful. He got me coke and chocolate yesterday after I emerged from my ATG headache (and before the fever). What more could a girl ask for? :-)