That was the quickest turn around time on any bone marrow biopsy that I have ever had.  My doctor called yesterday let us know that there is no sign or symptoms of disease.  I achieved remission.  The immunotherapy worked.  I am still in shock.  I mean I knew it was working in some capacity but didn’t think it was working this well.  So what does this mean???  I go straight into stem cell transplant.  My brother’s cells were collected at the end of December so we are good to go.  The tentative plan is to be back in the hospital on February 8th.  That’s right they want to get going right away.  There is still a lot of coordination that needs to take place but within the next two weeks I will be getting some new cells.  The hospital stay will be about 4 to 6 weeks.  There is still a lot of unknown and a lot of questions that we have for my doctor that will be answered at the next appointment.  So this is really all the information that I have other than googling the basics of what a transplant entails.  Link is below, from LLS.

I am very excited about this but am still in shock.  I just can’t believe it worked.  There’s still a lot of questions and things to do but it’s great.  I am scared, nervous and worried about the transplant.  It takes a huge toll on the body and there is always risk of GVHD(rejection of transplant).  It’s just crazy.  Plus there is talk of radiation, which I haven’t had before, but we will see.  I am not sure how you radiate cells in my bone marrow but I guess we will find out.  It’s most likely because we can’t use chemotherapy because my body doesn’t respond to it.

Transplant Information Link

So they pulled the bone marrow biopsy this morning.  As we were waiting a tear came out just knowing how important and what this means moving forward.  They did get some aspirate, which they couldn’t get the last two times.  I don’t know if that is a positive or not but it is good that they were able to get something.  Now the waiting game begins.  This is the part that sucks.  Let the anxiety begin.  Not much to do until they know they results.  I have to remind myself to just breathe.

This one completely wiped me out.  More than expected this time.  Yes, my levels were extremely low.  Platelets at 36 (normal is 150 to 450) and blood at 8.5 (normal is 12-16).  I didn’t get any transfusions that Tuesday.  I did get both blood (at 8.3) and platelets (at 17) yesterday though.  Thankfully.  I do feel better but still a little run down.  I am being slowly taken off the steroids as well so it may have some effects, possibly but not entirely sure.  I am tired of feeling so tired all the time.  It’s just exhausting.  I am over it.  I just want energy back for more than moments or a day or so.  I mean I get why but it’s just tiring after a while.  I wish I could take a vacation from myself already.

Next week I get my bone marrow biopsy.  I really hope this is working.  Ugh.

I would like to finally talk about what’s really going on.  I don’t want to scare people, I just want to bring some awareness that may not be so visible in everyday, especially when I really don’t bring it up here.

I am currently on an experimental NON FDA approved immunotherapy.  There are not many options if this does not work.  I could still participate in a clinical trial at University of Chicago next, which of course I would if I get on the trial.  After that, there are no other options that we are aware of at this point.  If I can’t get to a stem cell transplant there isn’t anything else that we know of.  Within the next six-ish months weather or not I will be living or dying.  I don’t think (or I could be very wrong and you all get it) there are a lot of people that are understanding or even know that, that’s it.  I know it sounds bleak but awareness is all I am trying to bring about.  It’s a part of my process as well to just make sure people aren’t caught off guard if things go awry sooner rather than later.

I am not saying I dying tomorrow by any stretch of the imagination.  To me there is still a lot of time but yet not a lot at the same time.  I feel like I got fucked or the short of the of stick, sure.  It totally fucking sucks, it’s not fair at all.  But cancer doesn’t really play fair or give a fuck.    This is just something I need to put out there so everyone, including myself, understands what can happen.  A possibility that’s all.  I am very hopeful that this treatment will work.  I feel it in my gut, don’t ask, I really don’t have any other evidence but that feeling, but I do.

Maybe you all are a step ahead of me and know and aware of all this shit but I need for me to just make sure it’s said out loud.  That’s all.  So on that note:

I am so very appropriate?

All I have to say is thank you platelet and blood transfusions that I had this past Friday to get me through the weekend.  I forgot what it was like to feel like a human.  Running so low for so long really took it’s toll.  Still feeling pretty okay today, so I will take it and run with it.  Nice to not have blood coming out of my nose for a change.  Bruises are still all over my legs, kind of looks like someone is beating me.  It’s pretty ugly.  At least it’s winter.  YAY, pants.  Going to the hospital tomorrow for the next infusion of immunotherapy and we will see what the counts are.

Had the second treatment this past Tuesday.  Wiped me out completely.   Came home and went to bed basically.  Again, some nausea and headache.  The biggest thing is fatigue right now.  Just so tired and exhausted doing just simple things.  But if these are the worst of it, I am A okay with that.  Yesterday, had to get both blood and platelets so it was another long day at the hospital.

I feel good though with all my levels up from the transfusions.  Sets a good tone for the weekend.  Hopefully my counts don’t drop that much and can ride into next week feeling ok.

Next up is another immunotherapy infusion on Tuesday.

So of course there hasn’t been a lot of information regarding potential side effects for this treatment but thus far, compared to everything else, it hasn’t been that bad.  There has been nausea, headaches and some night leg cramping.  Yup, those fucking cramps are back and now I am wondering if it has something to do with all the steroids?  CD22 work your magic.  Get rid of these cells.  Attack and Destroy!  I mean it would definitely help if I were sleeping consistently but it’s a lot of my control.  So I said fuck it last night and when the leg cramps starting kicking in, I went and took some morphine.  Fuck it.  The ambient wasn’t really doing it and the steroids are messing with me so much, I reached my line.  I mean that is what they are there for so why not.  Now for the fun narcotic constipation that comes along with taking morphine.  It’s really a weight of options, sleep or poop?  Sounds dumb but these are the kind of things I contemplate these days.

CD22 is finally happening today.  It has felt like such a long wait.  I am ready to just do this already.  I am nervous.  I have a TON of anxiety.  I don’t know what to expect.  There is so much unknown to this whole process, just thinking about it is overwhelming.  I guess it hadn’t really set in until now because there was so much waiting.  The drug is being infused today so hopefully they are correct that there are minimal side effects.  This whole process will be over the next 28 days.  Day one, day eight, day 15 and day 21 for infusion.  Day 21 should be another bone marrow biopsy.  That’s whole process in a nut shell.

I have a feeling this is what I need.  I don’t know why or how but I feel like this is going to work.  CD22 is my bridge.  This is the treatment that will get me to transplant.  I feel this.

So after all the approvals we are still waiting for the drug to be shipped so we can get this party started.  Supposedly, we in theory should be starting Monday or Tuesday.  The anticipation is just driving me nuts.  Plus they put me back on steroids to help quiet the disease and haven’t really slept, so as you can imagine I am one cranky bitch.  I know I have said it a million times but steroids are the worse.  I just want to sleep through the night.  I asked for a sleep aid, something I had reluctant to do in the past because I had only taken the steroids short periods of time then were done with them, but with no end date yet, I just couldn’t do it anymore.   Hopefully it helps with sleep.  I know at this point it really can’t hurt.

I finally received approval from the FDA for the CD22 drug.  Took so much longer than expected.  Just in time, since my leukemia has decided to come roaring back.  I have felt like crap the last day or so.   They gave steroids (which I HATE) at a very high dose to get it under control.  It’s already helped.  I should be starting the drug as soon as they ship it to the hospital to administer it.  Since this weekend is a holiday it may not be until next week.  Damn holiday getting in the way.  I just want to get this started already.  I never thought I would ever complain about free government day offs but I never thought I would relapse in this capacity either.  My brother had his cells pulled yesterday.  The drugs he had to take for 4 days before extraction were much more brutal than he or I anticipated.  It was almost like the flu with a touch of what it’s like for me to go through when my disease in full effect and bone is regenerating all at once.  He said “I feel like a 90 year old man”.  I can’t even begin to remember how many times I have said that statement these last three years.  Your body just aches in a way that isn’t easy to put into words.  He got a mini glimpse into my world and I don’t think he liked it.  Now we are just waiting for transplant which will take place as soon as I get my bridge.  I just need a bridge and I am so faithful and truly believe this drug will work.