Hooray! I managed to only wake up once last night and was able to go right back to sleep. I slept in until 8:30 which is a record for the last two weeks. Naps are a different story. I can manage 30 minutes before popping awake. I would have killed for this ability in college when sleep was in short supply and you had to get it where you could. Now I have the luxury and the need for naps, but not the ability. There are worse things.

I've been out of the hospital since Monday, but have been continued on steroid drops on my eyes due to the Ara-c issues that I have. Since this was an even round of modified Hyper C-VAD, I received Ara-c, also known as Cytaribine. Last year I developed the worse case of Ara-c toxicity of the eyes that my opthamologist had ever seen. My eyes sealed shut and I was unable to see for a little more than two weeks. My leukemia doctor only wanted me on the steroid drops for 7 days. I've done this route. Temporary blindness ensues.

The Pharm-D in the hospital looked up Dr. Kim's notes and she'd had me on the drops 4 times a day for 7 days, then twice a day for 7 days. Today my eyes got that familiar dry, gritty, you've been sprinkling your eyeballs with powdered glass feeling. I've been religiously using natural tears to irrigate my eyes, but I suspect the little bottle I was prescribed has preservatives in it. They dry your eyes out eventually. Chris made a run to the drugstore to get individual preservative free drops. They're doing a much better job. I'm just going to keep towing the line and hope for the best.

I have labs tomorrow and a nurse review. If things go as they have in the past, we'll be there all day due to technical difficulties. That's fine. It's better than being attached to an IV pole with your underwear hanging out of the back of a badly fitting gown, while being force fed saline.

Chris is having some computer problems, so we might not update while we're in clinic tomorrow, but we'll have something up by the next day.

Blogging Slightly Blind

A little jittery

It's strange how I managed to sleep in the hospital with all of the shenanigans going on around me, and yet sleep I did. Of course, it probably didn't hurt that I was getting Zofran and Phenergan which tend to put me out. I'm only mentioning all of this because I've been back at the apartment and can't sleep. That's right, I'm wound up from all of the Dexamethasone I had to have to help protect my heart from the Methotrexate.

I managed to sleep for a solid three hours last night before I popped awake and couldn't do it anymore. The next thing I knew, my mind was racing with the most inane thoughts that had absolutely nothing to do with anything. Literally. Nothing interesting, just odds and ends skittering around my poor beleaguered brain.

No sleep, plus steroids, plus crashing hemoglobin makes for a miserable me. Okay, not miserable, but mildly peeved. Chris's theory is that the steroids that have accrued in my system are artificially masking my low blood counts. I have to agree with him on this one.

I've been trying to burn off some excess energy, but the most I was able to motivate myself to do was make dinner. Since my sense of taste is skewed it was a little dismal. Chris being the amazingly gracious husband that he is ate with aplomb and a smile. How did I get so lucky?

I'm feeling run down from my abbreviated bout of chemo which leads me to believe that it's doing what it's designed to do: seek and destroy. It also feels like my hemoglobin is crashing, so manual labor is out of the question. I'm starting to believe that I will definitely have a transfusion on Thursday to go hand in hand with my outpatient chemo. Of course, every time I think that I'll have to have a transfusion, my hemoglobin is usually a few points above the threshold. Go figure. I'm just an oddball.

My next appointment at MDA is Thursday morning and I suspect that we'll be there all day. All things considered, there are worse things. ;)~

Okay, so I have to ask a favor. Two of my dear friends are currently under the weather and I wanted to ask for positive thoughts and prayers for speedy recoveries.

Nancy has recently been readmitted into the hospital at City of Hope in Los Angeles due to pneumonia. She's been such a rock for Chris and myself throughout our journey and I hate to see her under the weather after all that she has been through.

Susan is still undergoing testing to find out what's going on with her health and like Nancy, she's kept our spirits up and held my hand throughout treatment.

If you have a moment, please send them some positive vibes.

We arrived back at the apartment about an hour and a half ago after an abbreviated stay at MDA. Even though I got less chemo, I reached the half-way mark where I always start to feel a bit run down. I'm nauseated and tired and not really in the mood to do anything active, including pressing buttons on the tv remote. Sad, I know.

I just wanted to check in and let everyone know that so far all is well and I fully expect it to remain so. I get the day off tomorrow, then I'm back in clinic for a visit with Dr. Thomas. I'll have to leave it up to Chris for a longer post later.

Know that I am feeling fine, all things considered and looking forward to sleeping without an IV pole attached to me.

I found out that I had the types of drugs being administered for chemo incorrect. Since this is an even round, I'll actually be getting cytarabin (ara-c) instead of vincristine. Cytarabin is the drug that struck me blind last time around. I have steroid drops that should help prevent this. I just have to remember to put them in four times a day at certain intervals.

Some of the IV drugs require IV pre-meds. One of the chemo drugs, methotrexate, requires a pre-dose of dexamethasone which is a steroid. The idea is to protect my heart from the damage that could occur as a result of the mexthotrexate being pumped directly into my heart.

The thing about the dexamethasone is that it made me throw up the last time I received it. I' had it many times before and it's never bothered me. Last night, I was having dinner while getting infused. Minutes after the bag finished I was violently ill. It seemed like every single thing that I'd eaten for the day was staring back at me from the bottom of a pink bucket. Then my back started to feel like a million vicious mosquitoes were taking little chunks out of me. I couldn't stop scratching. The night nurse checked me over and I didn't have any outward signs of a rash. Rash or no, the itching was hellacious.

Chris's theory is that the first time I went through Hyper C-VAD I was working with my original immune system. Aside from not being able to fight off cancer, it was pretty good to me the first 32 years. My new immune system is fairly untested and we aren't sure of what it's capable of. Now we know it doesn't like methotrexate. My nurse gave me so IV phenegren while we waited for an order of IV zofran to come up from the pharmacy. I instantly felt sleepy when the phenegren finished. It wasn't the kind that I could fight and so I passed out like a darted bear as Chris has said.

Let me back up a bit and explain a second set back that I was responsible for. In order for the methotrexate to be administered, the pH of my urine must be 7. This means that I have to leave samples in the bathroom. I know this has to be done, but I feel really silly using the intercom system to let every one know that I've left a large container full of urine in the bathroom. I was the reason for the delay, yet again. My initial sample was an acidic 5.2pH. I was asked to start drinking a lot of water and a pill was ordered that would help. I dutifully started drinking. An hour later my sample was 5.8pH. At this rate, the bag would never be hung and did I mention I was sleeping in between making samples.

Chris was given the unenviable task of having to wake me up every hour to make a sample. If you've been following this blog, you know that I am the worst kind of monster when someone wakes me up from a deep sleep. Poor guy told me that I was absolutely vicious when he woke me for my 1:10 AM sample. I had absolutely no recollection of this. I also have no recollection of any of the nurses hanging any of my chemo drugs. They're required to have you confirm your identity and medical record number verbally. I also had absolutely no recollection of doing this. I can only hope that I was civil. I pray that I was civil. I know how childishly cranky I can be when wakened from a deep sleep.

I eventually passed the pH test, just barely. A two hour drip of methotrexate was hung, followed by a twenty-two hour bag of the same stuff. It should finish sometime tonight.

I had a lumbar puncture today and it went off without a hitch. The APN was going to do it without ativan and I think that was also my fault. When she came in to introduce herself, she asked me if I needed anything for the puncture and since I thought the ativan was automatically administered, I told her that I was fine. When she came in later to let me know that we'd be starting soon, I asked her when the ativan would be hung. I had to apologize for misunderstanding, since I knew that waiting on the pharmacy would throw her schedule off. She put the order in and I got it thirty minutes later. She did a great job and it was over before I knew it. The samples were absolutely clear which is a good sign.

I was told to lay perfectly flat for an hour to avoid the nasty headaches that can develop because of the procedure. Chris was kind enough to hold a soda at mouth level while I harvested the caffeine to ward off the same headache. The last thing I remembered was watching tv. Apparently, I fell asleep again, a la darted bear, and woke up two hours later.

I've been told that I'll be in here until Monday. Dr. Kebriaei is supposed to be popping in for a consult. We should know more about the transplant then. So, I'm looking forward to a quiet week of getting vital signs taken and taking tons of meds. Sporonox has made it back into the equation. Bleck!