Heather's "I have what?" Blog

Oh HAPPY DAY....

.... I am once AGAIN CANCER FREE.  I saw the head of oncology at USC yesterday after my last CyberKnife treatment and he says the cancer is GONE.  He said because the cancer that came back was NOT systemic and isolated only to the brain, in and easily ope-ratable area, the complete tumor was encapsulated and resected, no fragments or tendrils, etc were left behind.  They radiated the entire area around where the tumor was with 3 days of 45 minute CyberKnife treatments and those treatments are 1,000 times better than Chemo and I won't need Chemo at all.  I see my regular oncologist in Los Alamitos (the great Mario Curti) and he will confirm or deny that info, but from what I've read and been told I am done.  I have a follow up MRI in 6 months at USC and that's it.  The scans, x-rays, lab work, etc. all came back clean.

The worst part of all of this (well, there are 3 actually) are:

1.  Decadron:  A steroid used to stop the the swelling in the brain.  It was vital that I take it because many nerves were being pressed upon.  The side effects are awful!  Just ask my family.  Mainly, moodiness, insomnia, irritability - big time, and swollen eyes, neck, face and acne.  I am down to 1mg per day for 3 days, then 1/2 mg for 3 days then done.  It doesn't seem like much, but trust me ... it sucks.

2.  Fear:  I went from not feeling well, but being cancer free, to a neurologist, to an MRI, to a brain tumor, to brain surgery, to waiting on the pathology, to brain cancer, to radiation, to cancer free all in a matter of about 16 days.  All good, but one hell of a roller coaster ride.

3.  The wound itself isn't doing so well.  Ryan and Carl have been monitoring it for me.  I have been picking at the bottom, I think in my sleep.  If it gets infected they have to go in and replace the plate.  I have to keep it clean and dry and clip my hair up so it is exposed when I am not in public.

So as it turns out, all I needed was a "wire jiggle" after all.  This one came with a six inch incision, 19 sutures and a titanium plate, but heck, I'll take it.  Just another war wound. 

I thank everyone for their prayers!  I believe God gave me yet another chance at life through all of you.  I don't know how you all prayed, it seems that you must have been yelling from your rooftops, but The Man heard you!  I am grateful beyond words.  Me and my family thank you and love you all!

Heather

So the pathology came back ...

... not good, but not so bad either.  The tumor was malignant, metastized from the original cancer in my esphogas.  It took 2years and 10 months, but that stray cancer cell found a place to grow.  That's the good news.  We know what kind of cancer it is, we know it has responded well to chemo and radiation in the past.  There are no random shots this time, we know what we are dealing with.  The doctors are all optomistic and have never uttered the words terminal or stage.

I have appt.s in Los Angeles today, Monday, at 9, 10, and 2pm.  For labs, cat scan, MRI, and mapping.  Then I go in Weds, Thurs, Fri for actual radiation.  The treatment is focused, intense and I am expected to be phyically wiped out after the treatments are done at the end of the week. 

Next week, I see the great and mighty Dr. Mario Curti, my oncologist.  We will determine our chemo plan of attack and go from there.

To a novice, this would be terrifying.  But I am no stranger to this routine and although the words brain + cancer sound horrific, it is still a blip compared to what I've been through.

I spoke with Charlie Foster today, family from Arizona, I felt sooo much better after talking to him.  Somthing about his voice and words put me at peace.  He prayed for me and even fasted for me today.  I think when I talk to him I feel nothing but pure faith, love and honesty.  I can't thank him enough for the phone call.

I will keep you all updated.

Love, Heather

I am home...

... at long last.  I got home Friday afternoon after stopping at Starbucks and my amazing in laws to love a Gwennie for a while.  Was able to suprise and pick up Annabelle at school (yes on my own, should't but did) then I stopped by my dear friend's Sandy's where Annabelle was staying.  Stayed there and just chilled till around 7 pm then I drove home.

Carl was home early, and I had a restfull night, sort of.  Gwen showed up at the game (annabelle's last) and subseqent pizza party.  Perry;s was of course packed, but I think the girls had fun and thats what matters most.  I did too much in a day of course, Annabelle spent the night with Coach Duane he called and said she hit the WII had and sacked out by 7:30, good for her, bad for her buddy Hailey.

On to me ... They had to take out more brain and swollen tissue that initially found,  Good they didn't wait till Thurdsday.  They put a 4 in piece of titanium in my head, had to shave more than originally, planned, the suture is much longer than planned, but seriously, I am not at all concerned.

They were unable to perform the gamma knife the procedure, the opening left in my brain is more the 4cm and the gamma knife only goes up to 2.4cm.  I go in the Monday after Turkey day for an MRI, scanning and tracking, placement of the  of the Cybron knife.  It will still isolate what part of brain gets radiated, not the whole brain as I have been strongly advised againest.  The only drawback is one day of mapping folowwed by 3 treatments, weds, thurs, and friday.   But, at least I get next week off from dr.'s anyway.

I am allowed to shower and blow dry, just have to keep the incision dry and clean.  The sutures are self disolving and will go away on their own.  I won't have the pathogy back on the tumor until Tuesday or Wednsday, the dr's say not to worry that it's gone, was found no where else and to look as this a another blip on the radar.  I understand where they are coming from, but I could use the info just the same.

It seems, surreal to to me that I had a brain tumor.  I had diagonis to surgery in 7 days incuding the weekend.  That's fast.  It never had time to really "sink in" so to speak.  But now, it kind of is.  I had my brain fricking cut into!  Oy vey, I am here to tell the tale.  Will expound more later.

Thanks to everyone and their families for their love support and prayers  I know my family, my doctors and most of all me could not get through these trials without you and HIM.

I am doing ...

... amazing!  The surgery was a huge success.  They removed everything, and will schedule the gamma knife radiation treatment on a outpatient basis in the next couple of weeks.  The MRI this morning was long, loud, and hot but because of the results combined with the clearance from Physical Therapy I am in a regular room, no IV's or tubes and will probably get to go home tomorrow.  Can you believe it?  The power of prayer is awesome, even the dr.'s can't believe how good I am doing.  

Ryan and Barry are coming tonight, so is David Spilsbury.  I talked to Gwen and Ryan but Annabelle is AWOL with Sandy, how cute is that?  She better call soon though. or I'll pop her in the eye.  (inside joke)

I will update again when I can, just wanted to put you all at ease and know that your positive thoughts and prayers have once again pulled me through!

It's gonna be one of those days...

... so yesterday, Monday, I was sitting here eating a sandwich, going over my spreadsheet (yes, I said spreadsheet, I love Excel) of what needed to get done, cleaned, who I still had to call, etc.  then the phone rings, its USC.  They called to tell me the dr. reveiwed my scans a little more in depth and moved my operation from Thursday to TODAY, Tuesday the 17th.  It threw my spreadsheet into toal chaos, but I am going in at 12:30 pm for a scan and the operation is set for around 5:00.  Carl, had a list of people to text with updates, he can also be reached at 714-376-5848 via phone or text.  Again please pray for me and my family.  I am undergoing the procedure, but my hubby is in a way too, he's got to sit and wait hours to hear that is totally awesome wife is okay, and if I'm not he's got sit and wait to hear that too.  He's not great in hospitals, so I pray he has support and love from all of you as well.

A little story ... after getting the kids from school, we went a visited my friend Sandy.  The kids ran around and played, she and sat and talked, it was a great way to spend a couple hours today and I left her house feeling, calm and prepared.On the way home I stop at 7 11 for a coke and slurpees for the girls (ryan was with Barry).  We run in, it's cold dard, we run out with our drinks and the Suburban is DEAD.  We just replaced the battery 6 months ago, but it won't even turn over and make that clicking sound.  Carl is at work, it's five o clock, the girls have to pee and  I am trying to get ready for uh, Brain Surgery.  I sat for a minute, wiped the tears away and moved forward.  I called Barry (the ex of 12 years and original white knight in my life).  He strode in on lite blue Volvo.  Carl said to just "jiggle" the cables and make sure there was a good connect to the battery.  I was like yeah right, a tow truck is going to have to come, the money is going to even shorter this month because ot the insane repair bill, etc, etc.  Barry hopped out, popped the hood and "jiggled" the wires.  The car came to life!

Two lessons here, always trust the men in your life when they talk about cars. 

And maybe that small trial was alittle pat on my shoulder from God, telling me to relax, let go of my fears, trust in HIM and tommorrow's surgery will just be a wire "jiggle".

Awesome News...

... I still have a brain tumor, but that is all.  They did a full PET scan of my body and found NO other abnormal cells anywhere!!  We still don't know the pathology of the brain tumor and won't until they resect it.  I met with the USC neurosurgion on Friday, he is double booked for two months, isn't really taking new patients, but because of my referral from my esphagous surgeon, my age, and the swelling involved he is going to operate next Thursday the 19th at 10:30 am.

He said the procedure is only about 3 hours, my head will not be shaved, the only pain after the procedure will be in my neck where he has to cut through the muscle.  He will resect the tumor, drain the fluid, and use a gamma knife to erradiate the area around the location.  Afterwards, I should be symptom free, in the ICU for one night, private room for 3 days, then I could drive my self home if I wanted.

I feel so blessed to be able to see these amazing cutting edge surgeons.  Of course, I read the interenet and thought I would have to relearn to eat and write and be unable to drive for over a monthe.  He (by the way is Dr. Charles Liu, Ph.D.) laughed and reminded me that it was 2009 and I was in a state of the art facility.  He is a very caring, busy man, with a great bedside manner.  He gave me a hug, told me not to worry and that my cute little bob haircut would remain in tact.

I am glad things are moving quickly, now I have to move  quickly.  Clean, manicure, hair done, kids parceled out, etc.  At least we went to Costco and Smat and Final today as a family and stocked up on crap, Hot Dogs, Taquitos, Top Ramen, Frozen Pizza, Corn Dogs, etc ... all the typical Dad/Kid junk.  They had fun.

I will update again tommorrow, but wanted to get this out now.  I know so many of you are thinking and praying for me.  Please don't stop.  I truly believe the medical community has be guided by God to keep me here, they is simply no other explanation.  God bless all of you for your continued support and love.

Heather

PS.  My spelling and phrasing might be a little off ... I have a brain tumor!

I have a brain ...

tumor.  I started this blog to update family and friends about my journey through my battle to hell and back with esophageal cancer.  So, now here we go again. 

I had symptons of stumbling, vertigo, random numbness on the right side of body, vision problems, and short term memory loss.  I stopped taking all narcotics in June, so things should have gotten better in these areas not worse.  I went to my primary care physican, he sent me to my nuerologist.  After an office evaluation, I was sent for and immediate MRI, even the brain scan from July was clean.  When I got out of the MRI, she sent me back to my Dr.s office.  He said that I had a brain tumor, that apprears, at this point, to be completely un related to all the madness that was in my body.  They will not now if it is maligant or not until they do the surgery in 2-3 weeks.  I can believe they are going to hack into my brain.  Good news, the tumor in encapsulated and in a easy to remove location in the back of right cerebellum.  I will have some pretty intense physical therapy to retrain the right side of brain to do some things.  And I won't be able to drive for about a month after the surgery.

As of right now there is no Chemo on the schedule.  I have to get a full body nuclear PET scan to determine whether there is any thing anywhere else.  The cat scan in August was clean, so if anything is there it is small and early.

I am taking decadron (steroid) to control the swelling in my brain which makes me very hungrey and causes major insomnia.

So that's the basics for now,  I will keep you all informed this weeks as things progress.Please pray for me!

Heather

The unofficial, official launch of …

I have been operating on the "down-low" for about a year now and decided to bite the bullet and go public. I am trying to upload a portfolio to Flickr and this Blog, but both providers are giving me heartache. More pics will up and available for viewing hopefully by Monday at the latest.

A Mile in Your Shoes Photography

By: Heather Marx Spilsbury

(714) 376-5849 hspils@socal.rr.com www.hspils.typepad.com

Who will document your life? … ME!

Why Me? : I am many things, but the "labels" that stand out most? Mother, Wife, Cancer Survivor and Photographer.

I take photos of everything. The lives of my children and immediate family are very well documented. But … what about me? There are literally thousands of pictures of my children. The problem is I am in almost none of them.

These were the thoughts that kept me awake at night for months while fighting terminal esophageal cancer. Obviously, I won the fight. The first thing I did was hire a photographer to take family photos, not the department store kind, real photos of a real family interacting playing and having fun. Those photos continue to give me such joy; I decided to do it for other people. Photography has always been my passion, now I am sharing that passion with my clients..

Do you want to document your life?

I can provide that service.

• I offer a 3 to 4 hour on location photo session. "Location" can be anywhere, home, beach, work – be creative! Think about places that mean a lot to your family.
• You will receive a minimum of 30 photos (most sessions have 30-50 great images), individually edited, and retouched if needed. (Remember your photos should be a real representation of who you are, (just less blemishes and a few wrinkles!)
• You will receive a DVD of all the photos. This functions as a digital negative that is both unique and valuable. It gives you the option to print, enlarge, share and store your images. A photographers release will come with the DVD.

Fees

• All of the above is included in the session fee of $1,000
• 4 hours includes travel time and session time. Additional time, multi-day, multi-location sessions are available and will be negotiated as needed.

Travel outside of Orange and Los Angeles counties is available, contact me for travel rates.

I have been told...

... that I only write tragedies.  Reading back over my old posts ( I know it's been awhile) and I can't really argue much.  So this post on the eve of my 40th birthday will be full of good things.

Health update:  just had a cat scan and blood work done and miracles of miracles I am still cancer free!!!  No recurrence at the original site and no metastasized disease.  2 years and 8 months after the surgery from hell (thanks Dr. Demeester) and the chemo treatment from hell (thanks Dr. Curti)  and I happily have a healthy life.  Different for sure, but cancer free.  And that makes all the hell I went through worth it.  It seems like so long ago and I think that's a good thing. (sorry to steal Martha Stewart's tag line)  I never thought I would make it to 40 so for me this birthday is especially exciting and very non depressing.  FORTY FEELS FRICKEN AWESOME!!!!  I did have a little mid life crisis and got my nose pierced and new tattoo, but I had my body mutilated in so may ways, I wanted a little "pretty" mutilation.

Ryan Update:  my son is a football beast!  He's the starting center for the freshman team at Pacifica High School.  He really is good and I love that I get to see my young man having so much fun.  His days are long zero period starts at 7am and football ends at 6pm.  Then homework, dinner and bed.  His father, stepfather and I quite like it... no time for trouble  (or girls).  He is taking Spanish 1 and say it's lot's of fun, I like the fact that he actually has a school subject I can help him with.  This summer he grew, he grew alot.  His hair is long,( the little boy buzz I was so used to is gone) he uses more product on his hair and face than I do. He is now 5'10", 180lbs, size 13 shoe and hairy (and smelly).  He reaches down to hug me and it feels so strange to think that this being was once inside me.  I can't wait to see what the future holds for him.

Annabelle Update:  she is a cute as ever and loving soccer.  She is a great defender and loves her coach, practice, games and the cool aluminum water bottle I got her.  She is only 7, but seems so much older.  She is growing her hair long and wants her bangs cut at an angle this week "so I don't look like a baby anymore".  If only they knew how great life is now and would slow down and enjoy it.  She is in 3rd grade, has a great teacher this year that seems to motivate her in a positive way.  She is learning cursive and wants to know why?  She says she has never seen anyone write more that their name or grocery list in cursive. Amazing how things have changed since I was young.  I wonder what is in store for us and technology advances.

Gwen Update:  OMG!  I love this little 3yr old with all my heart.  I still can't believe my body grew something so beautiful along with something as ugly as cancer.  Explains why my pregnancy with her was so tiring.  With the older kids back in school and Carl leaving for work at 1pm, we have fun mornings with her. Friday, her and I took a bubble bath with no one else here to bug us.  It is those sweet stolen moments with her that I treasure so much.  As the little one she is always fighting to get her voice heard.  She has amazing things to say too!  She is very smart, know shapes and colors (in spanish and english), counts to 20 without missing very many letters, know the ABC's and sings that lovely little tune over and over and over, she know her right from left and has an insane memory.  I can be exhausting though, she never stops talking.  Even if I put on a movie or tv show, she talks to it, to me about it ... she is never without something to say.  She is primarily left handed and that makes things fun.  We are going to take just her to Disneyland for the first time this fall, I can't to see her little mind blown.  Maybe the awesomeness of it will silence her ... for a little while anyway.

Husband Update:  still as great as ever.  I love that man soo much.  His work schedule has been consistent for a while.  He works Monday thru Friday from 1pm to around 10pm with weekends off.  If you know anyone who works for the railroad, they will tell you it's a really good gig. He still spoils me rotten and I still melt when he looks at me.  I love being in true, gut wrenching love.

General Update:  we are in the process of paying of all of the debt we accumulated while I was sick.  We had finally paid off all the credit cards and car loans, then 3 days later, we got the news about my cancer.  We are slowly but surely paying everything off again and have really changed the way we spend money.  We are house hunting as well, 5 of us in this little upstairs condo sucks.  It's always a mess there is nowhere to put anything.  Oh! In April we got a dog.  His name is Cartman (as in South Park), he is part corgi and part jack russel terrier, technically a "co-jack", we got him from a shelter and he is a great addition to the family.

I am still working on whole photography gig.  I came up with a fresh approach (I think) and will make a new post directly about that this week.  I will be updating this blog weekly from now on or the awesome husband is pulling the plug, yikes!

I will post new, updated photos of us all tomorrow - (I promise honey!)

It never ends ...

... I have had trouble swallowing for awhile.  Called the surgeon and went in for an endoscopy (my 11th).  Everything looked fine with the exception of two suspicious spots that were biopsied and came back clean, thank god!  Blood work revealed that my thyroid medication was too high and thrown my system in extreme hyperthyroidism.  This is what they think was causing many of the other symptoms I was having, shortness of breath, hot flashes, eye twitching, irritability, shaking hands, hair loss, excessive hunger, horrible exhaustion combined with insomnia and depression.  Fortunately I have a great general practitioner who does thorough diagnostics rather than just writing me another prescription.  I thought I was in a major depression and needed anti-depressants, he said it was possible, but before we went that route he wanted everything else to settle down first.  We lowered my thyroid meds and it will take a couple of weeks for it to stabilize.  He also ordered a CT scan of my brain and carotid arteries to rule out blood clots and tumors.  I had a couple of instances when I got real dizzy and lost the vision in my right eye for about five minutes.  He wants to see if I may have had a "mini-stroke".  I also had the routine CT scan of the rest of me.  I should get the results of all this by the end of the week.

I am having a hard time adjusting to my new kind of normal.  I complained to my surgeon that I was having a lot of reflux, vomiting, dry heaves, nausea, diarrhea, etc.  He reminded me that all those things are to be expected and will never go away.  I knew this, but it is frustrating to feel better in your mind, to have more and more distance from the surgeries, chemo and radiation and the body just doesn't improve.  I couldn't help but think maybe some of this horrible discomfort would eventually subside, I was wrong...

it never ends.