Heather's "I have what?" Blog

Hello to Heather's followers thanks for all your love support and prayers . It is with a heavy heart that i inform you that Heather has passed away at 10/13/10 at 10:30 am PST. She put up a great fight but is in a better place now in peace and without pain. Thanks again
Her Loving Husband Carl

The Perfect Storm...

... oh my word! Yesterday started so sweet and calm, the sun shining, the birds chirping, Carl left early for a rules class for work, the girls got up early and had breakfast, took Annabelle to school, stopped by my friend Sandy's with Gwen and hung out while they worked in the garden.  Came home and Gwen sacked out! Yeah, I can get ready in peace to take her to Grams's on my way to USC for more radiation mapping and hopefully a treatment.  I was already to go, packed up, ON TIME and Gwen would NOT wake up.  I tried everything, twinkies, icees, coke, you name it she wouldn't get up.  So tough strong me decides to pick her up, 35 lbs of dead-weight on a barely functioning body - not so good.  I get her down to the second step (from the top) and set her down.  She sits and pouts, time is ticking and I am getting stressed.  The UPS man then shows up with his trainee and gets all the dogs barking at once, which scares Gwen into screaming as though I cut off her left harm, but she still won't budge.  At this point I am physically powerless, crying and know I can't make that appt in LA.  I put her on my lap, she is screaming the whole time, I get her pack to the the top step by schooling on my butt, putting a hole in my pants on one of the stair screws.  I set her up against one wall and get my phone out to call the dr. I had to call them 3 times because they could not hear me over Gwen or the still barking dogs.  Finally, I find out the appt. isn't even until today - Weds at 2:30.  I wanted to throw myself down the stairs all that for nothing.  Then I get angry, open the door and toss (not throw) Gwen inside, as I do this Cartman, the dog, runs out and the screen hits Gwen in the face and the screaming starts again.  Now, I must find the physical and emotional strength to get down the stairs, ignore the screaming kid, smile pleasantly to the neighbors and get the damn dog.  He runs around like a dog does,and I just sit and wait, he finally comes to me and I grab the collar and barely get upstairs.  Gwen is now pleasant, eating Doritos and watching Dora and wondering when we are going to Grams's.  OH MY GOD.

Carl got home by 4 and picked up Annabelle from Sandy's, I just couldn't.  When he got home I took 3 yes 3 ativan (like xanax) and I slept for two hours.  My body and brain completely shut down.  Carl took Gwen to his mom's last night so we didn't have to go through this again today.

The thing about cancer is the perfect storm.  Cancer does not care if you have three small children, are tired, hungry, hurting or afraid.  Maybe that's the thing that keeps you fighting, reminding you that you are not your disease, you are still the same person and now and them God provides The Perfect Storm to remind you of that.

Procranstinate ....

... oh how i used to love this word.  Why put off today what you can do tomorrow?  It will always be there, laundry, dishes, checkbook, etc.  But now, it has a new meaning, without pleasant lazy excuses.

After my brain tumor I started get some of the side effects back, dizziness, horrible pain in by back, just on the left side, and numbness radiating from my waist to my knee.  I have to walk with a  cane now (it is camouflaged) so you don't even see it.  (ha ha)  The neurosurgeon did a 2 hour double series MRI of my entire spine and found that I have eight in operable tumors inside my spine.  The wonderful/hateful drug Decradron has stopped most of the pain.  I have had one round of chemo and have the next tomorrow (Mon).  The dr's at USC can only radiate on the two largest tumors that are causing the most side effects, this should last ten days and start this week as well. 

I am not giving up by any means, but the dr's have informed my that my treatments from now on are purely palliative - trying to buy time, mobility and pain.  There is no curative treatment available.  Bitter pill to swallow, thus my silence recently.  I have come round back to fight mode though and am going to be much more aggressive in my scrap booking, medical records and love to all my friends and family.

I know many of you want to help, and that is a godsend.  Food/meas are always great but, I think I will be good for about the next 3 to 4 weeks.  I feel complete when I can nourish my family, don;t know why, just do.  But, when I need help I will so ask for it, I learned that lesson the first time.  Let people help!!!

I also know in my heart, I have to relinquish all power to God and let him to continue to guide, love and support me.  Knowing and accepting this gives me a great feeling of peace (along with an Ativan) that now matter which path my being takes, because of him it will be all right.

I'll end with the "medical" updates now, I am tired.  I will get into the emotional distress I am feeling sometime tomorrow after Chemo.

Love to you all, and sorry about the delay in communication, for the first time finding words has been difficult for me.

Heather

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