One day at time.  Get my head in the game.  Take and do the things that I have control over and make them happen.  My hair is officially falling out again.  Not that it matters at all.  Hair today, gone tomorrow.  It’s all relative.  Let’s do this, what else I am going to do.  Here we go.  Get better, stronger and take advantage of the time!

I actually have a surprising light week coming up.  The calm before the storm.  Mentally and physically get strong this week before my body gets pummeled again.  Home stretch here.  Only 14 more chemo infusions left before all of this comes to a head.  I am nervous, excited and scared all at the same time.  It’s hard to think that this possibly be going into maintenance soon.  Hope for a clean bone marrow biopsy and it will be all good.  Fingers, toes and body crossed this leukemia gets out of my body.

Thoughts crawl into my head all the time about all the horrible things that can happen. It’s difficult to not think about these thoughts sometimes, let them seep in and take over.  I try to accept them for a moment and then banish them.  I am here everyday so far giving my whole self to this process.  Distractions definitely help.  Reading, going to yoga and walking.  There is just so much unknown until the next biopsy that it’s making it harder to think about a positive future when there may not be one.  That this could go on for many more months before anything else happens.  I don’t want a bone marrow transplant.  There are so many risks that it’s frightening.  I know that would be an end all solution but it’s just not something I am mentally prepared for I guess.  But when push comes to shove I really don’t have a choice in all this.  I will take what my body gives me.  Fucking blood.  So dumb.

Be Kind

There is so much truth to this saying.  Since my re-insertion into the world at the gym, I literally have a different woman come up to me almost every time I am at the gym.  Weather they are asking me about my pic line or wondering what kind of cancer I have or just their willingness to share their own stories.  The amount of people cancer touches is just beyond what I would have ever thought.  Strong women, who fought and won.  Some multiple times.  Fuck CANCER!!!  Keep fighting until there is nothing left.

It is so beautiful today out.  It’s perfectly fall.  Cool temps with warm sun hitting your face.  Just so nice out.  I wish it were about 10 degrees warmer but this is great.  I will take it.  The leaves are changing and falling.

The LP with IT chemo went SOOO well yesterday.  Seriously, I have no idea what they are doing in IR but doing the LP with Dr. Razor in his office was 100 times easier and more efficient.  I can’t believe I didn’t do the last 13 punches with him.  Unbelievable.  It took half the time and was so much easier on my body.  Crazy.

I actually participated in a young adult chat room yesterday night through the leukemia and lymphoma society.  I will actually say there were many people there at all different types and stages of cancer treatment.  It was really good to hear about other people’s stories especially since there were a couple people completely done with treatment and had some great insight.  Always great hearing that there is a light at the end of this tunnel.  This is definitely something I will plan on doing again.  It was refreshing knowing there are safe places to go and share, vent, talk and just know what other folks  have to deal with during and after treatment and some of the challenges that could be faced.  I got more information in a chat room last night than anyone has been able to offer through this whole process.  People are so open and willing to help, it’s amazing.  Go cancer survivors!

I am stealing my mother in law’s quote.  Bad moments, but better days.  Day two of chemo this week and it’s my first lumbar puncture with IT chemo since my stroke.  I am very nervous about neuro leakage but forge ahead we must.  At least now we know the signs better and can go back for a blood patch sooner than later.  At least the neuro oncologist is doing the lumbar punch this time instead of interventional radiology poking around with a bunch of med students.  It’s supposed to be safer because it’s under X-ray, but I do not think so.  They’ve hit nerves down there.  What a bunch of ammeters.  I just want it to go smoothly.  Fingers crossed this will this morning.

One day down off blood thinners and I didn’t stroke out.  YAY.  Not that I thought I would or anything but you just never know these days.  haha.  It feels amazing to know that my stomach will hopefully within a couple weeks look normal again.  Little victories like these are so much fun.  I just get so nervous anytime my meds change that something is going to happen again.  Rest today and chemo Monday and Tuesday.  Here we go.  I can’t wait for all this “fun stuff” to be over.  I just want my friends and family to not have to stress or worry anymore than they already have for the last year.  I just want normal back.

Oh man, I had the strangest dream last night.  For the first time I dreamt I had hair and was at a salon all day long looking at hair products and trying to figure out which ones I NEEDED. Very strange.  The weird thing about my hair is that I really don’t miss it at all. I thought I would be upset or sad that I no longer had this hair that defined me, but I love the low maintenance of my shaved/balding head.  I think it freaks people out but I just don’t really care all that much.  I have my husband shave it about every two weeks to keep it tight but other than that, nothing.  I will say it was especially helpful to not have hair when I stroked out.  That would have been extremely difficult to navigate.  I joke with A all the time about never having hair again, but it’s all just talk.  I do miss the accessory that hair allows.  Kind of like make up.  Not needed but it does change a persons look.

I don’t miss shaving though.  My leg and under arm hair can go away forever.  That would be nice.  See ya later hair.

It’s been a busy doctor appointment week and the week isn’t even over yet.  More follow ups today. My neuro oncologist feels comfortable starting LP with IT chemo again, starting next week.  Fingers crossed no neuro leakage.  I am nervous about it but I guess forward we must.  The doctors are saying that the clot has dissipated completely which is amazing.  They still want me to continue on blood thinner shots and anti seizure meds until at least December, at which time we will do another MRI and re-assess the results to see if we can come off of some meds.  For them since the side effects have been minimal they want to be better safe than sorry.  I am on 13 meds right now (not counting chemo) so who knows what side effects I am feeling from what.

I can’t believe it but it is October 2.  Happy 21st Birthday to my little brother.  WOW.  I can’t believe how much time has past.

I am feeling exhausted lately.  More so than I expected I would be.  I feel just so lethargic.  Maybe it is the change in temps that are effecting me as well?  Who knows.  I am napping more and going to bed even earlier than usual.  haha, I know since I am already in bed at about 8PM.