A new year, a new beginning. . .

Upon revisiting this page, I find it has been an entire year since I last posted.  I began this blog as a way to record my emotions and to document the milestones of my chemotherapy and radiation treatments.  I now find myself at a crossroads.  As a person living with cancer, you eventually find that life goes on.  The world around doesn't slow down.  You have to create, for yourself, a new "normal" that allows you to keep moving forward.  

My life now, thankfully, is as "normal" as ever.  I have incorporated the 3-4 monthly MRI scans and oncology appointments into my existence.  I'd be lying if I said that I don't get nervous before these appointments, but it isn't the same terrifying anxiety that would plague me for several weeks prior even a year ago.  You develop a new routine that works for you.  I still have meds to take and I still get headaches more than I ever did before diagnosis, but that is my new normal.  

I think, perhaps, the biggest thing I'm trying to communicate is that I no longer allow cancer to control me.  Thankfully, there are even days where I don't think about it at all on a conscious level.  I have to say, that's very liberating.  I'm happier these days than prior to diagnosis.  My life is, surprisingly, better for having been diagnosed.  The "awakening" that I have experienced through this process has had far more positive than negative effects on my life. I know that some of you out there will be able to relate to these:

• Prior to diagnosis, I considered myself to be an organized person.  Negative.  You don't know what organization is until you have what seems like twenty thousand medical bills, pre-approval letters, insurance benefit explanation forms and duplicate (and even triplicate) bills landing in your mail box each and every day for six months.  Diagnosis with a serious medical condition should come with a free secretary.  Trying to make sense of and call to verify all of the bills can be frustrating.  Add to this the fact that you're undergoing chemotherapy and radiation and you really don't feel like facing another envelope.  In addition to all that, I have to say medical billing is a crazy process.  The anesthesiologist that knocked me out for my craniotomy and who I certainly didn't "choose" billed me as "OUT of network" initially and therefore wasn't covered by my insurance company.  Additionally, my lab work while i was under anesthesia (frozen sections and early tumor staging) were also "OUT of network" even though presumably someone in the O.R. handed them to someone very close by. 

• Prior to diagnosis, my financial outlook was pretty bleak.  I was driving an older car that was on its last legs and generally "spinning" my wheels (I realize the pun haha).  I remember quite vividly lying in the hospital bed, shortly after I had been told that I would need to have a craniotomy and thinking to myself:  "Bankruptcy, here I come!"  However, in working with the insurance company and the hospital and all of the providers to insure that I was being accurately billed and then to see what assistance my hospital could offer, I was able to pay down a huge amount of what I owed before I even finished chemo.  Subsequently, I was forced to create a budget and had no alternative but to stick to it.  Doing so enabled me to purchase a new(er) car.  It's crazy when I look back on how awfully irresponsible I used to be with money.  That said, I know from my personal experience and from symptoms listed and other patients I've talked to, that a frontal lobe tumor can really mess with your personality.  I'm sure that had at least something to do with the change in my mood and financial status pre and post surgery/diagnosis.  In the 2.5 years since my diagnosis, my credit score alone has jumped over 200 points.  

In short, my "cancer journey" has been an awakening in many ways.  I really would like to find out if any of the people who read this have similar anecdotes to share.  Please comment.  I like connecting with all kinds of people.  Also if you are wanting to offer or ask for advice, always know that you can email me or comment here.....

From NC where it's 21 degrees...stay well and stay warm!

Update on the update

Sorry for the delay, guys. Got my results last week. One tiny area of enhancement but neither the radiologist nor the oncologist sounded overly concerned. Its quite common for "false positive" enhancements to pop up around the resection cavity. Other than that, my last three straight MRIs were "nearly superimposable" which is FANTASTIC news as it means 4 more months of relative freedom. Fundraising for Relay for Life is kicking in to high gear. Just another 'ask' that those of you who are out there wishing that you could DO something to help in this fight against cancer please click below and make a donation. American Cancer Society is committed to funding research and programs that help those fighting cancer and their family/caregivers. So many people hear the words "you've got cancer" every day...and many won't survive their fight. If everyone just gave $5, the amount of research that could be funded would accelerate treatments and possible cures. Please help.

An update...

Dear Reader:

So, it has been several months since my last post.  Prior to Christmas, I was having some headaches that were rather persistant.  I made an appointment with my oncologist to determine whether or not to bring my scan forward or not.  We both agreed to keep the scan in January (it was TODAY actually) and to try varying my meds as perhaps I was experiencing 'rebound' type headaches and minor migraines.  I'm happy to report that these ideas seem to have worked. 

I had my first MRI at the "four month" interval today and will be seeing my oncologist bright and early tomorrow morning.  Please keep me in your thoughts/prayers tonight.

In other news, I'm working on the actual committee for our local Relay for Life this year.  American Cancer Society does such an excellent job in so many key areas and is one of the few organizations that funds RESEARCH for cures.  I've begun my fundraising efforts for the event and would like to challenge those reading my blog to donate either to a local charity or to my relay event using the icon below.  Awareness is only half of the battle.  Funds are needed more now than ever and with the twists and turns that the economy has taken over the past few years, a lot of non profits aren't receiving donations on the order that they were pre-2008.  I know we're all feeling the pinch financially, but please do consider donating.  If we all gave ten or twenty dollars, the dream of funding research to speed up the search for cures would become a reality and many of us (both those of us battling cancer and those around us who care for us and help us throughout our journey) would benefit.  Here is the link to donate. Please, give if you can. Together we can end the senseless cruelty of cancer. I will post an update tomorrow after my oncology appointment! Hope there are still people out there reading my blog! :-) Stay well, friends.

So much to do now . . .

Another 9:50pm post (in other words, still thinking of things late at night).  This time with good reason, however.  I'm working on the actual Relay for Life committee this year and we had our first meeting for comittee chairs last night.  I'm actually really excited to be in on the whole process from the beginning, albeit a little daunted by the proposed $30K in corporate sponsorship that I'm supposed to come up with between now and April.  For those out there reading my blog who are making this same journey either as a patient or as a caregiver, I URGE you to reach out to others through volunteer work.  In our small community, there are no brain-cancer specific events, I wish there were.  For that reason, I chose to work with American Cancer Society and have found that meeting other survivors and caregivers really has helped keep me in check and focus on things beyond my own illness.  It is a truly rewarding experience made all the more sweet by the money our small community has been raising for ACS.  Almost all communities have a Relay for Life....you can call American Cancer Society to find one near you....:-)

Back to "normal" for now

Well, thank you all for the prayers and positive energy that's been sent my way...my MRI showed a slight decrease in one side and stability elsewhere...my oncologist said that he saw scar tissue and no evidence of any active tumor in the residual mass area on the scan.  Also, those of you who've had post treatment MRIs know that hopefully they begin to show black areas of air/fluid in regions previously occupied by mass...another great sign that things are moving in the right direction.  I feel so blessed.  When comparing the post op MRI from last year with this one, for the first time I was able to see a golf ball sized space--the resection cavity--from which my neurosurgeon removed as much as possible (75-80%) last April...up until this point there has been inflammation and necrotic tumor tissue in that area....please continue to get in touch if you or a loved one are facing a similar situation...it is so helpful to talk to others making this same journey...also nice to know people are reading.

In hope,
Michael

The waiting game

So...here we are again.  Four months since my last MRI and today I had a scan.  I'm in that nether worldly state between having the scan and finding out if it is good news or bad news.  I've been feeling well and have now fully weaned off of my dilantin.  I've even become accustomed to a life where scans are a regular part of my life.  Its the 12 or so hours (thankfully no longer usually) between the scan and the results that still make me really nervous.  I've gotten used to almost all aspects of this thing but sometimes the waiting game still makes me nervous.

An update

I start by apologizing for the length of time between posts...it's been busy this end these past few months. I had another great MRI in May which was another milestone on the road. In April, I captained a Relay for Life team that was the highest fundraising team at our event which was GREAT....and ACS asked me to be the keynote speaker at the survivor banquet, the week prior to the event. A new school year just started and about three weeks ago, at my neuro appointment, the doctor asked how I'd feel if we tried to take me off of the anti-seizure med, Dilantin. I have to say, it's been a little tougher than I imagined to ween off of it, but in about ten days, I will be off of all daily meds...that just leaves fiorecet for headaches and Ativan for any anxiety-type problems. My next scan is sept 5th....fingers crossed and positive thoughts out there please if anyone is still reading. Thanks for your support and patience thus far....some of you that have contacted me directly have been great supporters and have helped me though some tough times...I will post again soon. Take care, everyone.

Time to Celebrate

Wow...what a week I've had.  Tuesday evening I had my Relay for Life Team Captain meeting at 7pm.  We're doing so well as a team and I'd like to thank those of you who have already donated. (Those who haven't may still do so by clicking on the icon at the bottom of this post.  Thanks SO much!).  Wednesday evening, I spent in an MRI tube (well about 45 minutes of it, at least).  But naturally, with this being my 3-monthly check up, the nerves and anxiety ahead of the test and then the test itself were beginning to get unbearable.  Then this morning I had my oncology follow-up.  GREAT news!  The residual tumor/ill mass is still shrinking.  In fact, this time it showed the most impressive shrinkage yet.  Previous MRIs had shown 0.3cm decreases and such.  Yesterday's showed 1.5cm decrease on way and 0.3cm decrease the other...and within the residual ill area there are pockets of fluid.  I'm SO grateful to all of you who have prayed for me or sent positive thoughts my way.  I feel like for a few weeks, I'm going to be able to lay down the luggage that goes with this journey and just take in the view.  Tonight--I celebrate.  Thanks, guys!

PLEASE DONATE!!!!! ITS SUCH A WORTHY CAUSE!!!!

My way of giving something back. . .

Over the past 10 months, so many people have been kind to me.  My family, of course, has been my rock throughout this entire experience and there is no way to repay the debt of gratitude that I owe them.  My colleagues and friends have also been extremely supportive throughout.  I told my mom, about 3 months after diagnosis, that after finishing initial treatment, I wanted to do something to give back and "pay it forward."  I've been thinking for the past few months what would be the ideal way for me to do this.  And, as if by fate, somebody mentioned the American Cancer Society's Relay for Life.  After doing some research, I decided that this was absolutely a cause that would allow me to give back.  As a HS teacher, I was also in a unique position to form a team and rally my students/colleagues and excite them about the prospect of doing something like this.  We're unifying as a school to do our part to raise money for American Cancer Society's Relay for Life.  Many friends (both here in town and those I have met along the way) have been very generous to our team and to me and it is with this in mind, that I just want to take a second to say "THANK YOU".  Thank you to those who are allowing me to pay it forward in my own small way, thank you to those who have been touched by cancer and feel the same need to push for a cure, thank you to those who have stood up in whatever way they can and said "ENOUGH!".  With everyone's support we WILL defeat this bastard of an illness.  We've seen too many people fight so valiently and still lose their fight.  It's 2012!  It's time we push both politically and fiscally to provide those researchers on the front line all of the resources that they need to find a cure.  We will do this one dollar at a time, one voice at a time. 

Any of those out there who would like to support my efforts, please click on the icon below and make a donation.  My name is Michael Norman  and I'm grateful to stand up and be counted as one more person living with cancer who won't go down without a fight.

(Thanks for letting me rant a little this time) :-) I wish you all health.  Here's to more birthdays for everyone!

To post or not to post?

Hello again!  So, I know my entire idea in creating this blog in the first place was to document my journey through the madening, terrifying world that cancer can be.  I also realize that recently, I have been posting less and less frequently.  I do want to apologize for this but I think I now understand why this is happening.  As I get further and further out from diagnosis, I'm obviously less stressed about the diagnosis.  Also, I've been VERY blessed to have had 3 MRIs showing slight improvement in the last 9 months.  I'm now re-learning how to live each day as a cancer survivor.  I don't use that term lightly.  Survivor doesn't mean that the fight is over and I have "won".  It merely means that I continue to live and to fight.  With each week and each month, as I go forward, I am actually finding where there are days at a time where I don't consciously even think about cancer anymore.  I have, to the extent possible, "taken back" the power for my own life.   In a way to wouldn't make sense to most that haven't seen cancer up close, cancer is the thing that actually has empowered me to live my life and for that, I am grateful.

Alive n' Kickin! and getting ready for the relay...

It's been a good long while since I've posted here but I'm very very happy to report that my MRI last november showed slight improvement and that for the moment I continue with no therapies and just 3-monthly MRIs. I'm on Dilantin still and also have meds for anxiety as needed.

Now, let me fill you in on something I've been really trying to make happen this year. I'd REALLY like to have an amazing Relay for Life team this year and as a teacher, I have the opportunity to have a large team. That said, however, I want to raise as much money as possible to beat this horrible illness and think you might be able to help me. If you would visit this Relay for Life website and click either on donate to participant (Michael Norman--I'm our captain) or donate to Team (O'Neal Falcons)  we'd be thrilled!

Thanks for all of your support along the way and now I want you to help me pay it forward!

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!!