I forgot to say a very big heartfelt thank you to everyone who follows our blog. Thank you for the comments and encouragement. We'll never be able to express how much it means to us and how reassuring it is to know we're not alone in all of this.

NO BLASTS TODAY!

Dr. Kebriaei's nurse, Cathy, is an absolute gem and got us a copy of my labs early so we didn't have to wait in agonizing suspense. I must have scanned the pages a hundred times looking for the dreaded words "blasts present". Nothing. Thank you, God.

My WBC count and ANC is still high, but it's down from Wednesday. My lymphocytes have doubled from the last time, which is also a relief. The other counts are holding steady and my liver enzymes are mostly normal. As an added bonus, my magnesium is normal.

We don't have a definitive reason for Wednesday's numbers. Dr. Kebriaei is leaning toward the theory that it has something to do with the steroids that I'm on. She also looked back at my records and noted that my WBC count has been as high as 20 for no explicable reason. I'm just a freak of nature.

I've dodged the proverbial bullet today and can guarantee that I'll be walking around in a fog for the next month or so. I'm so relieved that I can't function which is bad news for me, since Dr. Kebriaei told us to leave Houston. She told us to get out of town and go home. This definitely caught us by surprise and since I was resigned to staying here through the new year, I made Chris go grocery shopping. There's enough food for the next two weeks. One day I'll learn the rhythm of this game and arrange my juju accordingly.

Two years ago today the first outward symptom of my cancer to make me sit up and take notice appeared. It was a small swollen lymph node on my neck just behind my right ear. Why this one little "thing" was what made me call the doctor, I'll never know. For weeks leading up to this event I was suffering from severe fatigue, migraines, a swollen stomach, poor appetite, and diarrhea. I managed to explain all of these things away with excuses like working forty plus hours a week in addition to carrying a full time load at school. I had projects galore to finish and was in the midst of finals. I worked in the retail world and we were ensconced in the holidays. It meant for a lot of pressure. Add to all of this that Chris and I were caring for a pet with terminal cancer who we were not ready to let go.

Wednesday, when I got my CBC results I was speechless. What Chris didn't mention in the last post is that my doctor put forward the possibility that I was relapsing. She was very somber and said that she was sorry. Me too.

I'm having a hard time believing that I managed to survive two very difficult transplants only to have my original cancer come back. Let me be very clear that as of this moment we don't know for a fact that the ALL is back, but as my doctor said, my subtype is very aggressive and comes back very quickly. We may know today, or we may not.

I've been feeling very angry over the last two days. I have absolutely no control over this situation and having to stand by and watch people that I love suffer through this with me is tearing my heart out. To add insult to injury, I feel really well. I'm not manifesting any outward symptoms of illness. My appetite is good and my energy levels are normal. Inside, I know something's brewing in my chemistry. My white blood cell count is rocketing, as is my absolute neutrophil count. Then there's the mystery of the blasts circulating in my blood. I want off of this ride, but that's not possible.

I took a moment the other day to think about all of the treatment that I've had in the last two years and realized that there have only been four months that I haven't had active chemo. That's a lot of chemicals saturating my organs, which makes me wonder if I'm a candidate for any more. If I have relapsed, I don't know what my options are. I'm only 105 days out from my last transplant which leads me to believe that there isn't a lot left open to me. There is only so much the body can take before it starts to shut down and to be frank, if my cancer is back after only 100 days who's to say it won't come back again more vicious a week after the next treatment.

I have labs at 11:30am today and then a follow up with Dr. Kebriaei at 1:30pm. I know anything can happen and that it's only been two days since my last labs. My numbers will either be close to what they were on Wednesday, or significantly higher. If the past is any indicator and I am relapsing, then the blasts will have increased ten fold. I have a microscopic granule of hope that I'm just being dramatic and this is all really nothing, but I'm faced with the reality that there's a reason that I don't know a lot of ALL, t(4;11) survivors who were diagnosed as adults. Truth be known, I'm the only one that I'm aware of right now.

Not So Fast

Here we are at Day +103, and after getting Ann's CVC pulled yesterday we were ready to get our last appointment with our transplant doc out of the way and then hit the road for home. Things don't look like they are going to be that simple his time around. After getting her blood tested this morning the results were definitely not what we were hoping for. Her white count is up to 16.5 K/uL (up from 10.5 a couple of days ago), and there are 2% metamyleocytes and 1% blasts showing.

Anytime the "b" word gets used it's gravely concerning. No less so today.

Dr. Kebriaei asked us to come in Friday and Monday to check Ann's blood. The hope is that this is some sort of reaction. Just to be on the safe side I called the people we rent our apartment from and let them know we would be staying longer. Thankfully they agreed.

I hope we don't have to spend the holidays in Houston. I'm really tried of this place and Ann is getting frustrated. We both just want a normal life again.

Success

I am currently free of my CVC. Yippee!!! No more wiggly little bit of plastic tubing dangling in my heart. No more lumens. No more clamps to dig into my chest. Best of all, tomorrow I'll finally be able to wash that patch of skin. You have no idea how excited I am about that. Please bear in mind I was the child that had to be bathed three or four times a day because I couldn't stand to be dirty.

I'm back on oral anti-fungals today, so my fingers are crossed that my liver enzymes remain stable. I'd hate to be celebrating today only to have to have another catheter put in later this week.

I'm going to lay low for the next two days in anticipation of finally, officially being released to leave Houston Wednesday. Chris and I have started packing and are just waiting for Dr. Kebriaei to sign off on the entire affair.

I awoke sometime after midnight to a severely throbbing knee. Chris was still awake, so he took a look and found that my right knee was swollen. There was also a small bruise that I don't remember getting. I took two pain killers which didn't help. Chris put an ice pack on it and after a few hours the pain was gone.

This morning I had a little stiffness in the joint and there's still a small amount of swelling. Chris called my APN to report the incident and see what we should do. I didn't feel like it was an emergency room situation, but it was a strange enough occurrence that we both thought we should report it. My regular APN was out, but the nurse subbing for her offered to have a look at it if we wanted to come in. Since it no longer hurt I elected to sit tight.

I honestly don't remember bumping into anything, but the bruise had to come from somewhere. We'll keep an eye on it, but I'm hoping it doesn't merit anything more than a footnote.

Chris and I were the only people who showed up for the discharge class on Tuesday. The APN in charge of teaching the class was very nice, and I'm sure she tailored the class to suit the fact that I'd already been through this once before. I only learned one new thing. You shouldn't smoke marijuana because it's not processed in such a way as to eliminate molds and fungi. You're not supposed to be around anyone who does when you're post transplant for the same reasons. Color me crazy, but I couldn't imagine wanting to jeopardize my transplant that badly. I know there are patients who live a certain lifestyle before being diagnosed and they refuse to give up certain things just because they're being treated for cancer. There isn't a day that goes by that I don't see someone pulling an IV pole behind them while smoking in the designated area in front of MDA. These are all adults who are going to make their own decisions. I'd rather do everything in my control to ensure that I'm around for another half century.

I had labs early this morning, followed by an appointment in the ATC. My liver function tests showed that my enzymes are trending back down toward normal. They're still a little high, but Dr. Kebriaei was very positive about the numbers. The bad news is that we have to stay in Houston for another week. I have to continue IV cancidas through Monday. I'll have labs drawn that morning to see what's going on. The good news is that I'll have my catheter removed the same day. I have the orders for it in hand.

I'll restart an oral anti-fungal on Monday in addition to reducing the amount of tacrolimus I take. The v-fend affects tacro absorption, which is why the team is trying to balance the two. Wednesday, I'll go into clinic to see Dr. Kebriaei to get the lay of the land and possibly finally be discharged. I don't mind being in Houston, but our funds are dwindling and maintaining an apartment in Houston tends to get a little expensive.

With everything going on today, we ended up being an hour late for my appointment with Dr. Alousi. The visit was a follow up to see what was going on with my GvHD. The rash on my face and leg have completely resolved. I have developed a small spot of skin GvH on my lower back which is slowly going away. My joints have responded to the steroids and they're no longer tight or uncomfortable. I know this could all change since I've been tapering steroids for the last month. I'll be on steroids through April of next year according to my taper schedule.

I think that covers just about everything that's happened in the last two days. I don't have anything on the books through the weekend so things should be quiet.