A day to breathe. . .

Monday. Memorial Day.  NO treatment today.  It's been so nice to just feel like a normal person--to get up, have breakfast and not plan my day around my radiation appointment.  I have had a very good day to be honest.  I feel completely well and have good energy levels.  I'll report more tomorrow as I begin again my normal schedule of radiation treatments in the afternoon!

Transitions

So, yesterday was graduation for our seniors. The ceremony was bittersweet as this is a group of seniors with whom I have felt a particularly strong bond. The valedictorian made a beautiful speech and singled out who she considered to be the three faculty members who had had an especially meaningful relationship with her class during these past four years. As I heard my name mentioned among those three, I couldn't help but get a little emotional. At this juncture in my life, and given what I am currently facing, it really did mean a LOT..more than she probably knows and I am truly grateful.

In other news, I haven't driven since first being admitted to the ER on that fateful night back on March 26th. As a single adult, it's been more than a little trying to be reliant on people for the most basic of needs. My friends and colleagues have been fantastically supportive but all the same it has been difficult. I even remarked to my neurosurgeon's nurse as I submitted DMV paperwork that in some way the loss of driving privileges has been more traumatic than the cancer diagnosis. At least I can actively fight the cancer. Anyway, I called my neurosurgeon's secretary yesterday, and he said that she had submitted the paperwork along with a letter stating that in her opinion, ther should be no restrictions on my driving. I am VERY hopeful that DMV will listen to her and that the whole driving thing will resolve itself shortly...

Finally, thanks to those of you who have taken the time to comment/email me. Its so comforting to find other patients/caregivers out ther experiencing similar things. And...in that vein, I finally have a schedule worked out for zofran dosing that has enabled me to get rid of the nausea for the time being...yippee!

All in the timing...

What a difference a day makes! Today is the second month anniversary of my diagnosis with stage three anaplastic astrocytoma... Two months and one day ago, I'd never heard of such a thing. My life was "normal" and I was living in ignorant bliss of the 'monster within.'. If my oncologist is right, I've had this tumor for six, eight, maybe even ten years, waiting within my brain to wreak havoc. Yet it is these two months that have proven to be a massive wake up call. I am learning the true value of each day lived, learning humility from those around who continue to be so supportive. In the past two months, I have learned an entirely new vocabulary and done my best to educate myself on cancer--from the biological basics of cell division and gene expression to the complex world of treatment. I have learned that Radiation therapy has come a long long way from my preconceived notion of whole brain radiation to the point where now we can treat rumors much more intensely than a decade ago while trying to spare the healthy tissue as much as possible. I have learned that, as rough as chemotherapy side effects can be, they are far far less severe than they used to be thanks to new, more targeted drugs. Beyond all this, however, I am now seeing and truly learning how strong I am as a human being. Two months and one day ago, I could never have imagined being emotionally or physically able to go through this journey...through an intense surgery and seven weeks of chemotherapy and radiation and yet here I am! I am here today because of the incredible skill of my neurosurgeon, because of the knowledge and dedication of my radiation oncologist and his whole team of nurses and technicians, because od the compassion and intellect of my oncologist, because of my friends and students who have helped me tremendously, and also most importantly because of my family who have held my hand from the very beginning of this journey...helping to be my rock no matter what comes our way. Finally, I am making this journey with those of you out there who are also on this road. We are all at different points on this journey, and hearing from those of you who have survived this provides me a continued hope that I, too, can beat this. To each and every one of you, THANKS

A day to celebrate. . .

I'm posting this very late..much later than usual.  Tonight I went out for dinner to celebrate this milestone--halfway through my 7 weeks of initial treatment.  From this point on, I've got fewer days ahead of me than I do behind me and it feels great to know that I am going to get there...the end is in sight!

In other news, I'd like to take a second to thank you guys out there for connecting with me.  It's great to have support and others who know what you're going through, too.  THANKS!

Almost at the top...

Tomorrow is the half-way point for this seven week period of chemotherapy and radiation and let's just say I am very relieved and excited. From tomorrow onwards, no matter how tough things may get, I will know that I've got less and less time to go each day. Another exciting bit of news that I was reminded of today: Radiation Oncology is closed for Memorial Day! Don't get me wrong, these people are very very friendly and efficient...but three whole days with no radiation being hurled at my brain...sounds like a heaven at this point. My final half of temodar (for now, hopefully) arrived yesterday and tonight marks the beginning of those. I also had a friend take me to the drug store to pick up refills of my Dilantin (anti-seizure) and Valium (for use when having an MRI or spending long periods of time in "the mask." The techs at radiation today also scheduled a CT scan for Thursday to begin planning the boost phase of radiation. In other news, today was the hottest day of the year so far and as I've mentioned before, chemo/radiation and heat are definitely the recipe for nausea.

One last thing...if anyone out there is reading this blog, please feel free to add comments, share your experiences, or even to "follow" it. Thanks!!

2nd oncology appointment since beginning chemotherapy. .

So today was my 2nd oncology appointment since I began the Temodar.  My bloodwork all came back very good and my amazing oncologist seems guardedly upbeat about my progress so far which is always a relief!  Having said all of that, however, today has been a bit rougher than I would have liked.  It's in the 90s here during the day and I'm discovering pretty quickly that heat and chemo/radiation therapy do not a happy camper make! haha.  But seriously, today I've felt a bit weak and more nauseated than I have in a long while. I'm sure its a passing thing but that doesn't help me in the here and now.  I've been using aloe and radioplex on my scalp in rotation and they both help tremendously.  The Zofran I'm on for nausea is a miracle worker of a drug but unfortunately, can only be taken every 8hrs and so when I was hit with a wave of nausea this afternoon at 4pm, I was too close to my evening dose to chance taking one.  I guess in summary today has been both good and bad.  Hopefully tomorrow will be better, though.

Sunday, Sunday, Sunday. . .

So much for a lazy Sunday!  I've done more laundry today than I ever thought humanly possible.  Normally, I do one load on Wednesday and one on Saturday but this week has been hectic.  What with towels, changing the bed sheets and comforter and pillow cases and a week's worth of work and home clothes, I ended up doing 7 loads.  I guess what I'm saying, is that I spent almost the entire day on household tasks.  The strange thing, however, is that I've always actually liked these types of things.  Cooking, cleaning and generally taking time for me and my home...they're oddly soothing and stress relieving.  Now that I'm undergoing treatment, I find these things even more comforting.  In some way, I'm "nesting" haha.  Making my home and my environment cleaner and more comfortable and generally taking care of 'me'.  Of course, I think it probably has a lot to do with the fact that all of these things take my mind off of this illness.  To be honest, the world of cancer is strange and confusing at first and the learning curve, steep. Whenever I find things frustrating or confusing or scary, I escape to the familiar. 

Saturday night...working

Tonight, I am working at our school's theatre as a technician in the booth for an outside company. This is the third consecutive Saturday that I have had some sort of commitment beyond normal schoolwork and the truth is that this will be the last! Not that I don't enjoy a little extra money (now more than ever!) but my primary focus right now really does need to be my health and getting this thing into remission ASAP!! As I have already mentioned, I recently lost most of what little hair I had left (I was thinning somewhat beforehand haha). Well, today has been hellatiously hot here in sunny NC and my poor bald scalp has been begging for mercy!! I find that I am wearing a bball cap and even so I find myself running from shaded area to shaded area! Hahaha! On days like this, I find that aloe gel and a specialized gel for radiation burns called Radioplex are so soothing and a definite God-send!

Gotta love Fridays!

Last night was a little rough, but I'm happy to say that I've 'mourned' the loss of my hair, taken back control over the situation by having buzzed my head and successfully completed another day of radiation.  When you're going through Radiation therapy, you learn pretty quickly how fantastic Fridays really can be.  Why?  Because on Saturday and Sunday there is NO treatment! Weekends truly do become a chance for rest and relaxation from the increasingly difficult treatments I'm facing.  Granted, I take the chemo pills each day..but for some reason, Saturday and Sunday are now (more than ever) my favorite days!

The straw that broke the camel's back. . .

Having this far escaped the stereotypical side effects of chemotherapy and radiation, today's radiation treatment was apparantly "the one."  I was just eating dinner around 7pm this evening and when I scratched my head, I noticed hair fell out.  Before long, I noticed it was coming out in clumps :-(  As positive as I've been throughout this entire experience thus far, this has to be the worst for me.  I'm not sure why.  I'm only 30 years old and God knows my hair was already thinning.  I think perhaps on some level its about control--the loss of control.  For the first time in this entire process, tonight I FEEL like a cancer patient.  Tonight, I feel like I've lost ownership of my own body and that really frustrates me and angers me.  Tomorrow, I'm certain I will wake up with a positive outlook on life and a spring in my step as I have during the past 16 days of treatment.  But not tonight.  Tonight I will allow myself the chance to grieve for the loss of my hair. 

So many days have passed...

So, so much for accurately documenting each day's experience.  I will try to do better from this point forward.  Since my last post, I have had a plastic face-mask made which is used to bolt me down to a table each day as I am subjected to high amounts of radiation!  The planning phase for radiation treatment was actually a whole lot more involved than the treatments themselves--which are short (10-15 minutes) and painless.  I'm amazed at how high tech this all is, to be honest.  The treatment is IMRT (Intensity Modulated Radiation Therapy) and uses 3D image studies to plan treatments with the goal of calculating high doses of radiation for the tumor itself, while sparing healthy tissue as much as possible.  I've also been taking Temodar daily (7 days a week) in the hopes of ridding myself of this little bastard.  I began both Radiation and Chemotherapy on Tuesday, May 3rd.  I had some intense nausea on May 4th but with the help of Zofran (an anti-nausea drug that was also prescribed), I've managed to get through that just fine.  Other than that, I'd say the only effect I've felt up until this point is a slight increase in how quickly I get tired and my general energy levels each day--very slight, though.  I am still working full-time as a HS teacher and will finish up the year with exams next Tuesday and Graduation next Friday.

By the way, here is a copy of my pre-op MRI that I finally managed to take a picture of haha...