Give and take...

Sometimes when I feel completely stressed by the weight of this diagnosis and the mounting cost to essentially give me the possibility of a long and healthy life, my only means of escape is to pretend that I'm not REALLY a cancer patient, I just play one in the parallel version of my life.  Of course that type of mental vacation only works when I'm not heaving my guts into a plastic bin, light headed from any number of things, anxious at upcoming test or treatment, having trouble sleeping and/or sitting at one of my numerous doctor's appointments. 

These little mental outings would probably work better if I was on Xanax or Ativan but once again we must remind ourselves that I have been given the Oncologist that is hell bent on me remembering every gut wrenching turn of this whole insane ride.  Yep, I'm blessed like that...don't be jealous.

Since being home I've allowed myself to slip into the "normalcy" mode where I am delusional enough to believe that I am in control of my life and the things that happen in and around it.  Again, these moments would be less painful to rebound from if  I had a medicinal parachute, so to speak.  That way I could be let down gently instead of plummeting to the ground.  Apparently I got a little overzealous because I assumed that since I was feeling really good this week, which was a first since being discharged from Tulane, that I would be able to make plans.  And then I was stupid enough to believe that I would be able to keep them.

Yesterday I woke with a slight fever so I immediately had to scrap plans to head over to my best friend Mar's office in order to thank her boss and other city workers for their time and blood donations.  It's really important to me that people know just how much both my family and especially me are so humbled and grateful by the outpouring of support. 

Today was the first day of the fundraiser at a Le Cafe de Bon Temps and I was looking forward to having lunch there with my mother and two daughters as well as having dinner tomorrow with my husband and some friends.  The owner of the restaurant had agreed to take 10% of revenue from lunch and dinner for two days and donate it to assist with the rising cost of treatment.  On top of those plans, my very best friend since childhood would be making a 6 hour drive to come and throw my oldest daughters 16th birthday party on Saturday.  Then on Sunday my mom, who has been my rock to this point, would be flying back to Georgia and taking my youngest daughter with her to spend the summer.

I was excited that more of my days housed time with family and friends as opposed to clinic and doctor's visits.

I had been feeling so horrible when my dad and sister came to visit over Memorial Day weekend that I was looking forward to having visitors and actually being able to be up and about.  Everything was going great until I got a phone call from my doctor on Tuesday afternoon.  I was already a little emotional before getting the call because of having to postpone my visit to see my friend and her co-workers.  So when I missed the incoming call and was left to decipher what the message said it was almost enough to put a girl over the edge. 

Then I spent another hour trying to contact my doctor back so I could get further information.  While I do think that my doctor is good and thorough, I am hung up on two things....her inability to speak clearly to me and the fact that she is so against any type sedatives or pain medication.  She is out of her ever loving mind if she thinks I am going to just bite the bullet through all of this. 

I finally managed to reach her and was told the results of my latest bone marrow biopsy were in and instead of just telling me what the results were she was insistent that I come in to the office.

She had scheduled an appointment for me at 8:30 a.m. on Wednesday.  She kept repeating Wednesday at 8:30 a.m. like I was either deaf or a complete idiot.  I almost had to stop myself from saying, "it's on Wednesday right...like the day after today but before the next day?  And it's at 8:30 a.m., like morning time, not to be confused with night time?", but I figured that would only frustrate me more and the humor would be completely lost on this woman.

I was more than a little pissed that she wouldn't just tell me what the results were.  I asked her if I had to have labs drawn or anything of that nature that would necessitate me actually physically having to go to the office, to which she answered no. This is all fine and great if a simple doctors visit to get test results meant just driving to the other side of town and popping in to hear the results.  All of which, in the world of private health care takes all of maybe an hour.  Unfortunately, for myself, my mother...our butts that have to sit in uncomfortable chairs and our nerves that are frayed to the point of possibly breaking, our day was going to start early and take several hours.

I tried to think happy thoughts but trying to pretend that I wasn't a the cancer patient whose life and whose family's life has been turned upside down, was proving a bit more difficult today.  Sadly, every time I think we are getting the pieces back into some semblance of order the disease rears it's ugly head and reminds me that both it and my health care team are the one pulling all the strings.

I'd like to say that I waited patiently in the clinic to be called, but if God is trying to teach me the lesson of patience he needs to hurry the fuck up.  It is completely unnerving when you are told that there are test results that you know can have a bearing on your life...like your actual physical life of being in existence on this planet and then you are told, "I'd rather discuss these results in person"...yeah, the I'M FREAKING OUT factor goes up about a million notches.

Finally after 4 1/2 hours of waiting....seriously people if anyone reading this in uninsured, you have been forewarned...no private health care coverage equals you will sit and wait until the end of eternity.  Just a little health care tip from me to you...your welcome America.  So after we had put in our time I was rewarded with the news that my bone marrow had come back clean. 

And now I can release the breath I had been holding since yesterday when getting the phone call. 

Then the doctor comes at me with the news that since my results were clean of any blasts which are the leukemia cells I would need to start the next phase of chemo therapy.  GOOD NEWS!

She went on to tell me that since I had been responding so well to the initial round of chemo that I'd had back at the time of my diagnosis, there was a possibility that we were only looking at another 5 rounds of chemo, one of which would be coming up really soon, in order to get me into full remission.   GREAT NEWS!

I thought this all sounded like AMAZING news...until she told me I would be expected to be admitted on Thursday.  Ya know like the day after TODAY! 

In that split second I felt all the positive vibes of having plans and things to look forward to just seep right out of me.  It became clear once again that I am not in the driver seat at all times when it comes to battling this disease.  I am going to have times where I am at it's mercy or the mercy of the drugs used to rid my body of it. 

While my heart breaks at all the little things I will miss....

- Celebrating Olivia's 16th birthday with family and friends.
- Being in my own home in my own bed.
- Going to dinner with family and friends to see and thank those who are taking time out of their life and money out of their own pockets  in order to help my family.

...I know that my priority needs to be treatment and getting to remission.  Achieving that will hopefully leave me another few decades to make up for the months spent focused on my new arch enemy...leukemia! 

As long as this cancer understands that I will give it time out of my life but NOT my life in general then we should have no problems.  I can give it time.  I can even give it the itty bitty hairs that have started to grown back on my once bald head.  It can have almost all my energy and some of my sanity (although there isn't much of either) but it cannot have my spirit or my existence.  That's just where I draw the line at the give and take.

My oh my...what a perfectly shaped head you have...

May 20, 2010

I thought I would have been more upset.

I thought there would have been tears.

Hesitation maybe?

Nope.

Nothing.

When the clippers were clicked on, after my mother and I had a good laugh at the fact that they were actually for pets and not people, I felt like it was a welcome sound and not the thing that I once feared.  Of course the fact that the last time these clippers had been used was to shave my overly hairy dog Bridget and had most likely come in contact with her ass and now they were gracing my head felt completely normal.  This is my life.  Things are always a bit skewed and it keeps life interesting.  Ya just gotta roll with it and in this moment...my head was gonna be the ball.  Or the bald.

I could feel my mom's hand shake.  I don't know if it was the magnitude of the moment or if she was still laughing about the pet clippers gracing her first born child's head.  Either way, I began to see the remnants of what was left of my hair fall to the floor.

It didn't take long before the head that had been cloaked in hair for just shy of 33 years was once again free to take center stage.  In that moment it didn't seem to matter anymore what I looked like.  I'm not trying to go all Hallmark card/Lifetime Movie of the Week because we all know A) it's not me and B) that crap just ain't funny.  But there it was...a feeling of "it's just hair, it's not what defines me and this is but a bump in the road" and in the grand scope of cancer this was nothing. 

I had a friend that brought me scarves to cover my head and I was flattered by the thought.  Everything that people have done since learning of my diagnosis has made me realize how truly blessed I am in this experience.  But just as quickly as I opened the bag that held those scarves I made the decision that I wouldn't hide the fact that I no longer had hair.

I'm only fearing showing my children.  Not so much Olivia because I think she can wrap her mind around this whole mess, but I worry about Hannah and how she will react.  I don't know how much time I will have to ponder that thought because I have no idea when I will get back home and be able to be with my girls without the rules of the Bone Marrow & Transplant unit in the hospital.

It's now day #24 and as each day ticks by I feel less and less anxious about what it will be like once I'm no longer in the protective bubble of this unit.  I'm not going to say that I'm not fearful of this diagnosis and the possibility of an unfavorable outcome but with the last wisp of hair that fell onto the floor from my head so did that powerful hold that this diagnosis had on me. 

So with that....I give you the "new me"....... 

...and now I will be accepting ideas on what I should do with all the time that I will be saving on washing my hair, conditioning my hair, drying my hair, styling my hair...finding hair ties, finding the right hair products...and on and on.

Hair today...gone tomorrow

I had hoped that cutting my hair super short would keep me from having to shave it all off.  Once again, I was mistaken.  I swear this cancer crap is making me feel about as stupid as I do when I'm trying to understand my 5th graders math homework.  Way to kick a girl while she is down cancer!

Although large clumps aren't coming out and finding themselves lounging upon my pillow to stare back at me when I wake up.  But just from Monday when it was cut to this evening I am seeing more hair falling out and I don't forsee it getting better.  So instead of letting myself look like a human with a case of mange, I am gonna bite the bullet and shave it all off. 

I'm nervous as hell.  You'd think I was sitting here contemplating what appendage to cut off.  The nurse practioner that did my last bone marrow biopsy is known to shave patients heads when they are ready to take that step, so today when my mom was visiting we told him that we would be requiring his services.  He said he didn't have his clippers on him so he would come and see me tomorrow.

All the nurses have been really supportive and keep telling me that I will feel much better once it is shaved.  I hope they are right.  Jon says that he will shave his head as well so that I don't feel alone.  I think it is both sweet and laughable at the same time because my husband keeps his hair so short to begin with that going bald really wouldn't be that drastic a move for him. 

I'm still touched that he would do that for me.  When Hannah came for her visit to the hospital we had talked about the fact that I may lose all my hair and Jon said that he was going to shave all his hair off if that happened so I wouldn't feel alone.  Hannah just got this look on her face like "you better not expect me to shave my head". 

I assured her that we wouldn't expect her too.  But the look on her face seemed to say "I don't believe you people for a second so I'm gonna be sleeping with one eye open". 

I'm hoping that once it's done I won't have an emotional breakdown, but knowing me...there will be more than just a few tears shed over the loss.  But at least I am doing it on my terms and hopefully that will carry me past the waterworks that will ensue as the clippers touch my head.

Oh when my hair, oh when my hair, oh when my hair starts falling out....

I had just made it to day #14 in the hospital, which was 5 days after completing chemotherapy and I had yet to lose my hair.  I didn't kid myself into believing that I wouldn't lose my hair.  But with each passing day and nothing coming out I began to feel optimisitic.

I have been around enough people that have undergone chemotherapy to know that it is a side effect.  So I had seen people who had lost all their hair right away, some that lost just a little and others that lost no more than a few strands. 

I wasn't trying to put myself in anyone of those catagories.  In all honesty I was trying not to think about it at all although it seemed to be the only thing that consumed my conversations with my mom.  I knew that if and when it happened I would be emotional but really thought I would just take it in stride like I had all the other things that had been taking place since being diagnosed.

All that rational thinking flies out the window though when you wake up to a clump of your hair no longer attached to your head, sleeping oh so peacefully on the pillow beside you.  I felt like someone had torn off one of my limbs. 

I must have laid there staring at it for a good 20 minutes before actually picking it up and acknowledging that yes it indeed did come from my head.  I started to sob.  Again.  For me in that moment it all became real. 

You'd have thought the 7 days of tortuous chemotherapy and the side effects would have been an indicator that "yes Jessica, you REALLY have Leukemia" or even the repeated platelet and blood transfusions I was undergoing on an almost daily basis.  And to a point they were.  But it became a different reality with that first clump of hair.

I sat up in bed and got out my brush to try and pull my hair back into a pony tail.  With each brush stroke more and more hair came out.  Some were just tiny strands and others were clumps.  I sat in my hospital bed holding the balled up hair that moments before had been on my head and sobbed. 

It was my moms day (her and Jon's mom have been taking turns) to stay with me and as soon as she walked in the door to my room I burst into tears about my hair.  She just walked over and threw her arms around me and told me how brave she thought I was and how well I was handling all of this.  I thought she had gone off of her meds again because clearly she was not seeing the semi hysterical daughter clutching a fistful of hair that would not be going back onto my head.

I endured another 7 days of having clumps and strands fall out before I finally called a friend of mine who owns a salon and asked her to come and cut my hair.  I was not ready to shave my head yet although I get the distinct impression that is what is going to end up happening. 

As she was trying to comb through to start cutting she said it was just coming out in large amounts.  I tried to keep from crying because although it's just hair and it will grow back, it is one more thing that I am having to cope with.  Once she was finished I felt a bit better, mainly because I had taken control of my hair and not just waited as each day more and more fell out.

So for now this is my new do....

I'm hoping that I will be able to avoid having to shave my head and hopefully not lose anymore hair, but ya never know.  All I can say for sure is that this morning was the first time since that first clump of hair was on my pillow that I woke up to nothing laying next to me.  My new "do" is taking a lot of getting used to, but its nice to touch my hair and not have strands just fall off from the faintest touch. 

And on the upside, I will finally know what it's like for Jon to just hop in the shower, wash his hair, towel dry and go.  Always gotta look at the brightside of life's little detours....