Oncology appointment and Birthday...

Hi all!  So Oct. 10th, I had my most recent Oncology appointment.  It was a general "check-in" with my onc. and a scheduling appointment for my next MRI (which is scheduled for Nov. 15th...fingers crossed!).  I really love how personable my entire team is but most especially my medical oncologist and his nurse.  I was in there for just over an hour and most of the time we were discussing LIFE..not cancer.  Though I'm sure there are many doctors out there content to shuffle patients back and forth, I'm very fortunate.  My entire team takes whatever time is needed to connect with me as a human being.  Anyways, since my most recent post (which was some 3 weeks ago), I've had some anxiety issues from time to time.  They've prescribed Xanax which to be honest is very helpful.  It's better than the Ativan that I had been given previously as it is shorter acting and doesn't make me drowsy.  It just helps take the edge off of any panic or anxiety and get on with my day.  As I still work full time, this is very good as I don't find that I'm dragging by day's end.

Oct. 11th was my birthday...31 years old! Where did the time go?! Hah.  First birthday since my diagnosis, also.  First of many to come!!

That's all I have for now....but do please keep commenting/emailing.  The most useful "tool" I've discovered during this whole process has been the support and camaraderie from those on the same journey.  Thanks.

Moving forward...need your help

Hi, everyone!  So, this morning, I've decided to act on an idea that I've had for several months now.  The National Brain Tumor Society (who's website is an amazing asset for many reasons) has both Fundraising and Awareness Walks, Rides, etc.  I've noticed, however, that there are none in North Carolina.  I have decided to try to organize some sort of awareness/fundraising event in NC.  We have the Relay for Life, of course, but I'm trying to find something more specific to Brain Tumors and the havoc they wreak indiscriminately.  I've contacted National Brain Tumor head office for advice on how and what to do next but would like you guys out there that come across this blog to provide help (advice, guidance, comments).  I really like their "Get Your Head in the Game" campaign and think that approach would be appropriate.   If you are located IN North Carolina or have experience with this sort of issue, please contact me ASAP.  Given that we have one of the major centers for research here--The Tisch Brain Tumor Center at Duke University (my alma matter!), I'm actually surprised there aren't events already.  HELP! :-)  Thanks!!!

A rest stop along the way. . .

1) The DMV sent me a letter back in May requesting that I send in a medical questionnaire.  My neurosurgeon submitted said questionnaire stating that in her professional opinion, despite having had a seizure, I was now medically "fit and safe for driving."  Despite her recommendation, the doctors on the review panel saw fit to deny my request and sent me a response giving me 15 days to submit all licenses in my possession or request a hearing.  I requested said hearing back in early June and JUST had it this past Monday.  SUCCESS!!!  Having the chance to actually explain my case and submit letters from both my medical and radiation oncologist in addition to my neurosurgeon's original letters as well as answering questions about what actually happened the night I had the seizure worked.  I had a lawyer (one of my student's fathers who took this on pro bono thankfully) also helped.  I am now "allowed to continue driving using my current license" and will just have to resubmit forms each six months stating that I am still seizure free.
2)  Tuesday was my follow-up MRI and Wednesday morning had a follow up with my oncologist.  This was the first follow-up since completing radiation and chemotherapy.  To say that I was a little anxious before hand (during the past 8 weeks) would be an understatement.  I was terrified of having another seizure and also of these results showing further growth or additional tumors within my brain.  All of the anxiety is understandable but in this instance, thankfully unfounded.  The MRI showed 'slight improvement' and we were just hoping to see "no change."  So to say that all of us were VERY happy would also be an understatement.  I have no oncology follow ups now till October and another MRI in November.  FINALLY...a nice and very welcome rest on the winding road that is my journey..my new normal.  :-)

A return to the familiar. . .

Wow...so tomorow I'm cleared to begin driving again both legally AND medically and I'm THRILLED!!!  One of the most trying experiences of this whole journey so far has been my inability to transport myself to treatment or the need to rely on friends for shopping trips or basic needs.  And let's just say this moment has arrived not a moment too soon.  Tomorrow I have THREE appointments in a row.  At 11am, I'm meeting with a lady at the local gym (also operated by the company that runs the local hospital) to discuss enrollment in a "Cancer Wellness Program".  It's a $400 program for 2 months of yoga, meditation, counseling, nutritional advice and also access to one of any number of their gyms for that 2 month period.  There is, however, financial support available and thanks to the generosity of the underwriting foundation, I'm probably not going to have to pay to do this.  If all goes well, I'll be starting the program next Monday.  My second appointment is with my oncologist.  Its a 'normal' 10-day check-up for blood work and general concerns.  All of these appointments have been pristine so far...so here's hoping to another day with perfect blood work and overall health.  Following those two appointments, I have my normal afternoon radiation treatment.  I've been doing so well with these up until this point, but yesterday at "Doctor Day", my radiation oncologist was a little concerned with how red my forehead is and added a new gel treatment to help that skin heal more quickly.  So far, so good.  As for other side effects, I'm doing better this week than I was last week--fingers crossed! :-)  Thanks again for all of those of you out there who have taken the time to comment or email...very nice to forge connections with others making this journey. 

P.S.  Today I was scheduled for the simulation of my 'boost' phase at radiation.  Not long to go now!  I think I'm down to 11 treatments remaining.  2/3 done!!!!

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...

Let's cut to the chase. . .

So, I've told you about my unexpected jaunt to the Emergency Room late one Saturday while my poor dog stayed home awaiting my return.  I've explained in general terms the process of removing a brain tumor.  Now let me briefly explain what else this means.  Brain tumors are either benign or malignant (as is the case with most if not all tumors).  Often neurosurgeons and other specialists will suspect what a tumor is by considering factors such as the patient's history, symptoms and imaging studies such as MRI and CT scans but to be truly sure, they have to examine tissue from the tumor under a microscope.  This was true in my case.  The neurosurgeon had an idea what we were facing but wanted to see the pathology reports to be sure she had it right.  During the procedure, slices of tissue are frozen and examined for initial or "cold" pathology reports.  While it is true that on occasions these reports are inaccurate, in my case thankfully they coincided with the final pathology report.  In no uncertain terms, I have cancer.  That awful word (and yes, it is just a word after all) that sends shivers down our spines and makes us lose touch, even if just momentarily, with reality.  Specifically, I have what is known in the trade as an Anaplastic Astrocytoma.  This nasty type of tumor (not that any tumor is "nice") is a stage III malignant neoplasm with the very real potential to kill mercilessly and quickly--often in a matter of six months to a year if you believe some of the statistics posted on the internet.  That's just it, though.  I don't.  Or rather, I refuse to.  Not because I am in denial or because I can't bare to face reality but simply because of logic.  Statistics are, by their very nature, representative of entire sets of numbers drawn from all types of people both in terms of age and in terms of the amount of tumor that is removed or "resected" during surgery.  In my case, I've been assured that I am young, otherwise healthy and that my surgeon was able to perform a "Gross Total Resection" (in other words, she got almost all of the damned thing out).  I'm scheduled to begin Image Guided Radiation (5 days a week for 7 weeks) next Tuesday and will begin taking 3 chemotherapy pills at the same time.  As my mother told me shortly after my diagnosis--"Failure is not an option."  I'm now a person living with cancer who may have a hard road ahead but I will get there by placing one foot in front of the other and moving forward.  I will be keeping this blog as a record of that journey so that I can look back in several months and see how far I've come.  I will remember, many years from now, how short a period my battle with cancer truly was in the broad swath of time that will be my life. 

Surgery and Post-Operative

Following my MRI on March 27th, my neurosurgeon scheduled me for a craniotomy--basically a procedure where they cut through your scalp, remove a section of your skull, remove the tumor, re-attach the bone and stitch the scalp back up.  To put things into perspective, the scar that this surgery ultimately left on my scalp (which is healing amazingly well by the way) is approximately the size and shape of a horseshoe.  I was taken into surgery around 5:50am and was in recovery by approximately 3pm that afternoon. Following surgery, I was wheeled to an ICU room and placed under observation every 30 minutes initially and then every hour for the next 24hrs.  The next day, feeling much more lucid and energized, I asked if they could move me to a normal neuro room.  Eventually, they did so and I spend the next 48 hrs recovering and was increasingly able to rest since the observations were cut back more and more as my vital signs were normal.  By day 4, I was well enough to be discharged and was sent home to continue my recovery.  I must just add: the nursing team at the hospital were absolutely amazing throughout and I feel like nurses are often undervalued. THANK YOU TO ALL!



Stitches and Scar--48 hrs post-operative



Diagnosis

I'm not the kind of person that normally writes blogs for others to read and comment upon.  In fact, I've never done this before and never thought I would...but to be honest, I never expected to receive the news I received recently either.

I left home that night around 11:30pm on Saturday, March 26th with the intention of buying a pack of cigarettes and maybe a bottle of soda and returning home.  A quick trip that I had made many times previously that should have taken no more than 15 minutes. Half way home, I began to feel strange and knew instinctively that I was about to have a seizure.  I guess this is the "aura" phase that people talk about and I'd had two previous seizures and knew the terrifying feeling and the awful sensation of feeling my mind disconnect from my body.  The last thing I can remember thinking to myself as the seizure began was "stop the car, stop the car."  Beyond that--blackness and then, suddenly, I came to.  Paramedics and police were knocking on the window of my car.  I was dazed.  I looked at the clock--11:58pm.  How could that be?  I looked back to the paramedics.  "Are you doing alright tonight, sir?" she asked.  I nodded.  "We got a call that maybe you might need some help and we'd like you to come with us to the hospital to get checked out."   The next thing I clearly remember if being loaded into the back of an ambulance.  Suddenly the rush of cool air hit me as I was being taken out of the ambulance and wheeled into the Emergency Room.  I remember nothing of the ride to the hospital nor of how I got from my car onto the stretcher.  The next two hours blur together as my mind fought valiently to regain control and banish the clouds of confusion that had settled in post-seizure.  Several points in time stand out from that time like beacons within the mist.  I remember being told that they were going to need to get a CT scan of my head.  I remember being told they'd found something abnormal in that CT scan and that they'd need an MRI to follow up and explore this abnormality further.  The next moment of clarity that I have is laying in a bed in the ICU of the hospital, again having no recollection of how I'd gone from ER to ICU, and waking up.   There was a female doctor holding my hand.  She introduced herself and told me that she had some bad news to tell me.  She proceeded to tell me that they had found a mass in the left frontal lobe of my brain that was approximately the size of an orange and that they would be taking me to surgery the following morning to remove it.  I don't know how I expected to feel in that moment but to be honest with you my initial shock was followed almost immediately by calmness.  I nearly immediately went into business mode and told the doctor quite plainly that surgery the next day would be "impossible."  I explained that I had left home with the lights on, the TV playing and my dog on the sofa.  I further explained that I have no family in the local area and that a surgery of that magnitude would be simply impossible at that moment in time.  I asked how long she thought I could postpone the surgery and her response knocked me back a little.  "Well, we're talking weeks not months" she replied.