I finally feel like hell is almost over, maybe.  At least I am getting glimmers of hope.  It’s bee a long time for sure.  I supposed to get out of here tomorrow so we will see how that goes.  It did suck.  There were no fun parts to this.  Fuck man.  Between the mouth sores, whole body swollenness and just overall discomfort, it is not easy or fun.  Everyone down plays it like it is not that bad when at times it is.  There are so many different emotions going on just in terms of going home.  The anxiety, worry and all the what if’s that could happen.  It’s overwhelming to process all of this information.  Also I will be looking forward to my bed asap.  I hate these dang hospital moving beds, so annoying.

Last night I took advantage of getting another bag of platelets and took my amazing medical combo of liquid Tylenol, only two pumps of dilaudid and liquid IV Benadryl.  Best sleep I have had since the other morning.  It is amazing.  Who really needs sleeping aids when you can take this beautiful combo.

I finally spiked a fever today after flirting with it all week.  That means a slew of tests like chest X ray, peripheral blood draw and port blood draw.   I was waiting for this to happen and am shocked it hadn’t happened sooner.  The doc’s just need to make sure it’s not something more serious, which I completely understand.  Also, I shaved my head again.  I am a baldy.  It was falling out so much that I just was like, let’s be done with this non sense.  So it’s gone.   I love it.  So nice not to have to deal with it.

As previously posted, my mouth is a mess.  I can barely swallow liquids now.  They gave me back my pain pump full of dilauded.  We all know how I feel about dilaudid.  I love it.    While in my quest for relief, I managed to find the perfect high.  It was three, 2 mg shots of dilauded, given over 45 minutes due to safety restrictions put on the pump, one container of liquid Tylenol and one IV push of Benadryl.  Benadryl alone puts me to sleep almost instantly, but the combo was an expected “gift”.  Self medicated and feeling great, I finally slept from six am to nine am without being bothered.  I enjoyed that high and that sleep.  I would do it again given the chance.  I just don’t want to feel the pain in my mouth anymore.  Mind you I didn’t set out with this as my intention.  It just kind of happened as the Tylenol and Benadryl are my pre-meds for the blood products I receive.  What a happy little coincidence though.

Please just skip if you do not want to read about this disgusting situation that is happening.  I have mucositis.

Here is Mucositis Explanation via Wikipedia

It is absolutely disgusting.  It is from the radiation and chemo combined with low/non existent counts.  Apparently once they go back up the mucositis will resolve itself.  But for now it is extremely painful.  I can’t eat solid food.  I have been on Boost supplement shakes and water.  I can’t even swallow my pills anymore.  It also looks absolutely disgusting.  It is white, puss like and creates a white film within the mouth, sores and my mouth is swollen.  It feels like my mouth is one open sore wound thing.  It’s so gross.  They did give me dilated for the pain which does help.  Also, I have been eating ice chips which is helping ease the pain.  Salt and soda rinse is helping it not get infected.  I will not post pictures of this because it is just absolutely disgusting. So if you feel so inclined you can on your own google pictures of it.  It’s so gross….

On Monday, my brother’s cells were transplanted.  The whole thing took longer to prepare than the actual infusion itself.  It took about seven minutes and it was done.  I was so hopped up on Benadryl that I really just wanted to sleep.  I felt and looked high as a kite.  Thank you IV Benadryl.  So, then I slept for three hours after and it was amazing.  Apparently because of the preservative that they add to the cells when freezing them, there is a side effect that I smelt like “concentrated fruit juice” for about 24 hours after.  So weird, considering I could not smell it at all.  I guess from what all the nurses were saying it’s like a birthday, hence the day zero.  So we are two days in and no changes really so that’s good.  It will take about 10 to 15 days for engraftment to take place, that’s when all the side effects if any will happen.  Graft vs. host, etc…

My counts are almost zero’s and I just wait in the hospital now until they tell me I can go home.  I feel like all of this could have been done as an outpatient but I understand the caution.  I still have my hair, although it is thinning (a part of me just wants to shave it again).  Just be done with it already.

Today is my “rest day” before engraftment tomorrow.  No more chemo or radiation.  No more dexamethasone at 20 mg a day.  I feel so bloated and disgusting.  Plus, I somehow gained 8 pounds of just fluid in just one day.  All liquids, not from food, considering I could barely keep any down.  Ugh, that was worse and yet not as bad as anticipated at the same time.  If that makes any sense.  So I am hoping engraftment goes extremely smooth.  My counts go down and then back up just like they are supposed to and no infections.  Just breathe.  It’s all I can do.  Do all that I can each day to make sure I put myself in the best position possible.  I have used the exercise bike and walked these halls everyday and will continue as long as I physically can.  So here we go….

Kind of feeling like shit to be honest.  My skin looks like it’s sunburnt from radiation.  My face is all bumpy feeling from radiation.  They put me back on birth control which along with all the other meds is making me feel bloated and gross.  Started chemo today and to be honest I feel like shit.  Just gross.  Not really any other way to describe it.  A little bit like I want to shit myself or throw up on myself.  I didn’t think it would be this bad but ugh….fuck.  I have today and then tomorrow then I am done with this chemo shit.  But fuck if it’s not rough.  Hopefully this is the VERY LAST time.  I just want to sleep for the next two days straight.  Is that possible?

Back and checked into the hospital.  400 square feet of luxury at it’s finest.  ugh, it’s already unnerving hearing the beeps from the other IV poles coming out of other rooms.  That sound is the absolute worst, well at least top five for me.  So infusion of my brother’s cells starts at day zero.  So today is day negative seven.  Sounds confusing but this is how they do it, we can go back to just counting in positives after infusion day.  Day zero is like your re-birth, blah blah blah….

I am so ready to get this party started.  I need to take this one day at a time.  I have to just go back to the mindset “realize what I can do and when I can do it”.  Give back the control for hopefully the last time.  For the next month I will not be driving my own bus, I have to let others take the wheel.  Not much will happen today.  I have to get a bunch of labs, dressing changed and then get fitted for my radiation protection plate.  All the action starts tomorrow.

A bit of crazy facts that I had no idea about, which means most of you may not either.

1. My brother’s is blood type O+.  My blood type is A+.  After my transplant I will be O+.  That’s right I take on my brother’s blood type.  WHAT?!?  I don’t even understand this one.
2. My existing allergies may go away.  That’s right I may no longer be allergic to cats and dogs or have seasonal allergies anymore.  That’s amazing. Now I can get my wiener dog that I have always wanted, name him Richard Head (but of course be called Dick Head for short).  I mean I would prefer a different dog but this is just too funny to introduce people to my wiener dog named Dick Head.  How could I not pass on that opportunity, right!
3. Best one yet…If I were to kill someone and leave a drop of my blood behind.  Technically, it would be my brother’s DNA.  Yea -wrap your mind around that one.  I say regardless there’s enough reasonable doubt, for sure.  Might be the perfect murder, not that I will go on a killing spree but just throwing it out there.

These are very interesting.  I mean think about it.  My blood and immune system will be (or at least is the goal) 100% my brother’s but everything else is still mine.  Like if they were to take a piece of bone for DNA, it would be mine still.

I was given a four to six week stint in the hospital.  I am jokingly calling it my prison sentence because sometimes it feels like it.  You can’t leave and you’re stuck in a tiny little room (cell).  Only to leave if I am walking the floor or using the one stationary bike.  My dad and husband do not find this joke funny, but I feel as though it’s fitting.  I will be going back into the hospital on 2/13 for my stem cell transplant.  There are so many emotions going on.  I am excited to get this party started but am nervous and scared for what is about to happen.  It is giving me a LOT of anxiety.  I know once we are actually in the hospital and doing the activities that are required it will go away but it still sucks.

Here is the game plan as of right now:

2/13 check into hospital

2/14 start full body radiation twice a day and chemo for 6 days.

2/20 my brother’s stem cells are put into my body (engraftment)

After engraftment, basically it is a wait and see how the body reacts.  The doctors said there is most likely a 100% chance that I will get some sort of infection.  It’s that common.  Besides that hopefully there is no graph versus host disease, which is a big one they will be watching out for, amongst other side effects.  Here we go, this is hopefully the last hurtle before the end.