Today's doctor update 4.10.08-It's a good update

Sorry for anyone who thinks I am posting too much. I have a ton of FM's though and just want to keep everyone updated because everyone has been soo kind and sent soo many well wishes.
I will make this the official thread and as I have updates from different doctors I will post them here.

5/24
Today we met with the head of neurology and got some updates. There is of course good news and not good news.
The good news is that the the tumor is not IN my brain, but rather it is pushing against my brain, my eye and pushing its way into my sinus cavity. The not great news is that the location of this mass is in a very very bad spot and its going to take a very skilled skull surgeon to get this bad boy out. Our exact plan of action can not be mapped out until further tests can be performed. Further tests can not performed while I am pregnant. So the plan right now is to get the baby to 34 weeks (I am 30.5 now) and then take him out via c-section. I will then be given two weeks and serious and rapid testing will begin on me and brain surgery could follow as soon as needed from there.

The good thing? This is NOT life threatening UNLESS the skull surgeon is off by a millimeter...then this could turn ugly and fast. The other worry is that where the pressure is to my brain could start causing me to have some siezures but we just have to wait to see if that starts happening and then we will deal with it.


So thats todays update.


5/28/06 Update
I have no idea why I didn't update this yesterday, my apologies.
So we met with another neuro surgeon yesterday to get a second opinon. Second opinons always make me nervous because I feel like if its completly different then the first that it will throw me in a complete tail spin. However, I do know that they are certainly needed! Especially in the face of what I am dealing with. Driving up to the facility I could already tell that I was not going to be as impressed as I was in the previous place and I wasn't.
However, I was told many of the same things by this doctor that I was told by the other one.

1. A few key tests are needed but MUST wait until after is born
2. The tumor is "probably" non cancerous
3. Its in one of the worst spots it could possibly be in
4. It will require brain surgery to remove
5. I need to find the highest trained skull surgeon I can

Thats all for now! We met with the perinatolist next and then after that we are going to start meeting with some skull surgeons.

6/5/2006
Today we meet with the perinatologist to find out exactly when Joey can come out! Iam sooo excited to finaly start working on a timeline for all of this to get moving.
The appointment is at 1:15 and honestly it can't get here soon enough!

6/5/2006 Take 2
Well, we found out NO information. My nero person wants the baby out early...the perinatologist wants to wait as long as possible and I get to sit and continue to live in pain as they fight it out.
I am deflated right now.


6/12/2006
Today we met with the neuro-surgeon. I liked him and I think we will go with him with the brain surgery comes into play.
However, like every other doctor we have met with he let us know that we can't do anything until we get further testing and we can't get ALL the tests we need until Joey is born.
SOO I guess for the time being we will just concentrate on trying to get Joseph to 36 weeks.
OOH he also said that he is not going to rule out it being cancer at this point until further testing is done Which I get, I just really didn't want to hear.

6/20/2006
I had an appointment with my OB's office today. She is oging to talk to my perinatologist and to my neurologist and see if we can get a game plan going. The game plan we talked about was to do an amnio this week as well as a steriod shot and then plan to take the little one out next week (he will be 35+ weeks) via c-section. She is going to call the perinatologist now and I am supposed to call the neurologist and she said she will call me back by the end of the day.

6/20/2006 take 2
Head of Neurology just called and freaked me out. When he heard about my hearing loss he became VERY concerned and said I have to get in for an MRI so I said "Once I get my c-section date we can schedule it" and he was like no, we need to get you in NOW, someone from scheduling will be calling you"
So now I am quite freaked out since I always imagined that it would take a lot to freak the doctor out.
The scheduling person now just called as well, they weren't kidding...they want me in ASAP. I bought some time so DH could get home but it looks like I am going in for tests in about 2 hours.
Ugh, seriously, now I am freaked.

Update 3
Amnio on Monday
C-section on Tuesday! My little boy will be born on 6/27/2006

6/21/2006
The head of neurolgy just called with my MRI results.
NOT GOOD The tumor is growing faster than they thought and this just took quite a bit more serious of a turn. NOt only is the tumor growing but my brain is now starting to swell. After the c-section next week we need to go in and get a biopsy done and a spinal tap done ASAP.


6/26/06 Pernatologist update.

Went in this am and had the amnio. Peri-natologist said he would usually like to see the fluid a little more cloudy which donates a bit more maturity. But all looked good on the ultra sound. Joseph is measuring about 4 pounds 14 ounces and we will know this afternoon if we are an official GO for c-section tomorrow.

6.26.06 update 2
Well it doesn't look like we will be delivering Baby Joseph tomorrow. The amnio results came back and they are not great. My OB especially does not like that we would be delivering him at 5pm which he considers "afterhours" and doesn't think the best people will be in the hospital for us.
Tomorrow the OB and the perinatologist will be getting together and then they will talk with us and we will have more information.

6/27/06 updates
Thank you all for your well wishes. I promise they are all WELL received and VERY MUCH appreciated.
DH spoke to the OB this am (I was actually catching a nap! WOOHOO!) and the OB asked if I could hold out until Friday. Last night DH and I had discussed that exact day (we were afraid to go past that because of the 4th of July holiday) but it looks like us, the ob, the perinatologist and the neurologist are all in agreement that Friday is a good day (for both me and baby). I will be just shy of 36 weeks and they feel these few days will really help Joseph's lungs.
So 6/30/06 is the day!

7/5/06 update
Got word today, I will be back in the hospital on Tuesday for my biopsy surgery.
Plus side is things are moving along quickly...minus...more surgery AND apparently no bending or lifting for 2-3 weeks which means I will need someone to hand me my child everytime I want to hold him / need to feed him.

7/11/06 Update
Biopsy today
just got home
experienced some complictions
feeling a little cruddy
going to take lots of meds
love you all
and thank you for all your hugs and love!

7/11/06 update two
Still bleeding bright red blood so we called the doctor and he advised us to go to the emergency room. Off we go...
NOTHING IS EVER EASY FOR ME!!!!!


7/12/06 update
I'm back. NOthing was done to stop the bleeding.
I need to return to my ENT FIRST thing tomorrow morning where we decide on one of two yucky choices.
a. stick a balloon into my sinus and just let the blood continue to build up
b. Do an empbolization where they cut my leg and head up to my coritad (I spelled that wrong) atery (in my head) and cap it off there.
Both are not fun
Both are painful
b is pretty darn invasive and involves still more surgery.

7/12/2006 Update 2
Good News- Joseph is probably coming home on Sunday!
Bad News- He has to come home on a monitor
Awesome news- My little man is coming home to me
I reallly hope they don't delay this and that sunday is INDEED the day!

7/13/2006 Update
Biopsy results are in...
Adenoid Cystic Carcinoma less than 30 years old and I have what is described as a very rare cancer.
I don't have a ton of info as to what stage or our approach yet because our neurologist is on vacation, we have an appt with him on Wed. though so I should know more then.
Darrens parents arrived in town today and got to see their grandson for the first time so that helped keep my spirits up. Tomorrow we go to our CPR class, then my sister comes into town and then Darren and I stay over in the hospital to learn the monitor for Joseph because as it turns out, he will be coming home on Saturday! WOOHOO!
I htink the good thing is that I qwill be soo busy this weekend that I won't be able to moop at home over this news.

7/19/06 Update
So we went and met with a team of doctors today at MD Anderson. It was good, it was bad, it was overwhelming and it was reassuring.
We learned that I do in fact have Adenoid cystic carcinoma and its more than likely a T4 cancer (this will be confirmed when MD Anderson received my biposy slides). It was confirmed that this is a rare cancer that affects only 1 in 2000 people in the world BUT where mine is affects only a few people as the doc said "you are very very rare". Sweetttt I like to be different and now maybe I can be a medical journal story.
All the doctors confirmed that my type of cancer will not be treated with chemo as chemo doesn't really have an affect on it. Instead hte course of action will be to have a Craniotomy and then let myself recover a bit from that and then start radiation treatment. Radiation will be 5 days a week for about 6 hours and will last 6 to 8 weeks
We are also adding more teams of doctors to my case and I have a ton of doctors appts coming up.
Tomorrow I meet with social services that will help me arrange transportation to MD Anderson in Houston
Friday I meet with the Radiation department to discuss the effect radiation will have on me
on 7/25 I will have a CT scan done(to see if the cancer has spread)
on 7/26 I meet with the Pain Management division to come up with a new medication regiment (apparently my current one is sooo high in acetametaphin that its HORRIBLE for my liver).
on 7/27 I will have a bone scan done
on 8/03 I meet with the Head & Neck Cancer Specialty Section leader to follow up.
In addition, I am waiting to schedule some testing on my legs (they are sooo swollen the new fear is I have blood clots in them)
and waiting for an appt with the Director of Energy Medicine.
WHEW!
A lot to take in...we are now moving forward and its SCARY!

7/25/2006 Update
Learned today my cancer in inoperable.
Was a big fat blow that was unexpected by all of us.

8/9/2006
Officially have appointments with Dana Farber Cancer Institute in Boston AND one with Moffit Cancer Institute in Florida for additional opinions.

8/20/2006
Went to Dana Farber this past week. My doctors there (about 6 of them) agreed with the assessment that the docs made at Md Anderson Orlando and Md Anderson Houston. I do indeed have Adenoid Cystic Carcinoma in my head behind my left eye. It is wrapped around my optic nerve and my carotid artery and it is indeed inoperable. Sr. P agreed with my treatment of Radiatoin 2 times per day with Chemo once per week. Although, Dr. P did say that he would add two additional chemo meds and my Orlando doc, Dr. T has already concurred.
Tomorrow I go and have a 2 month pediatric appointment for Joseph at 11am. At 2:15pm I go in for Radiation Education and then at 3pm I get fitted for the mask I need to wear during each radiation appointment.
On Tuesday I have a follow up with my OB from my c-section and then I will be receiving guests at my house to ring in my 30th birthday party AND it will be the last time that we have outsiders in the house since I will be soo susceptable to illness.
Wednesday I have an 9:30am appt with my head and neck surgeon and then I have a 12 pm dentist appointment to get 4 cavaties filled which really ***** on my b-day but I can not have ANY dental work while going thru treatment.
Thursday morning at 845am I have an appt with Dr. T (the head of my head and neck team) as a touch base then I have a very specialized MRI to take tiny thin pictures of my head so everyone is VERY sure where this bad boy is. Then at 3pm I go in and have ANOTHER CT scan.
On Friday I go in on friday to get surgery. The surgery will be to get my port aka shunt) put in.
Last but not least Monday arrives and treatment will begin! At 830am I get my first rounds of Chemo.


8/25/06 update
Had surgery today to install the port
all went well
I am currently in quite a bit of pain though
thank you all for the well wishes.



8/25 take 2
Chemo starts monday
OOOOh one more thing to add insult to injury...I was let go by my company yesterday


9\1
Very and very
not sure how much I will continue to update, while I feel like this.
Thanks all!

9/2
Updated Joseph pictures
ooh and an update on Joseph. Last Monday he had a sleep over test for his breathing. We learned that during the night he stops breathing 180 times Because of thise, he has now been put on oxygen.

9/5/06
Round two of seven in chemo land is done.

9/6/06
OMG
My artery or vein or whatever that my port is in.
OUCH
OWIE
LIKE ZONKS SCOOOBS


It didn't feel like this after chemo last week...
YOWSER
YOWSER


9/9
Ok well had an infection had to meet with the doc and got put on more meds for that (you cant believe how many I am on!)
In addition,
Got bad news yesterday....cancer looks like it is spreading and growing up on my dura layer that protects the brains.
Treatment will continue on as planned though because there is not a lot we can do about it where it is now so we hope that radiation will shrink it and then we can get it at that way.

9/11

Took Joseph to the doc today. He is measuring 10 lbs 5 ounces and 23 anda quarter long.
In addition, we learned the poor boy has a hernia



9/13
Radiation started today. One down 69 to go! WHOOOO!

9/26
Another Chemo down 5 down 2 to go.
We also learned today that we have 4 days less of radiation than we originally though. With having it two times per day we have 44 left rather than 52. It doesnt seem like a huge difference but to me and having the effects and going up there two times per day, its huge!
As for me. I have sores on my cheecks, on the insides of my lips, the corners of my lips, and the tip of my tongue.
Also my tongue is swollen as is my throat and my glands are no longer producing saliva.
Life is a little tough but my docs just gave me some new meds so hopefully they will help me with the pain. Its believed that this is from Chemo so hopeflly that is true and its only 3 weeks of this left rather than almost 5 while I get treatment and 6 weeks post treatment.

As always, thanks for the continued prayers and THANK YOU to Barb for her Debg family fundraiser.


10/4/06
Well my 6th chemo treatment is down and just one more to go (next tuesday!) WOOHOO (Hey I am celebrating the baby steps!)
In other news, I go in for a small procedure tomorrow where I am having a feeind tube put it. Its not a major surgery but I will be staying overnight at the cancer institute because I have not been healing very well. The feeding tube is a good thing for me. I have dropped nearly 40 pounds since we started treamtnet 6 weeks ago. I need to get my nutrition up so that my body can help fight fight fight!
OOOH my hair started falling off in massive clumps so Darren and I took out the buzzer last night and took my hair off in my turms. I know I will still go completly blad but I don't think it will be AS hard to watch.
OOh and just because this is my life...AF arrived
I dont get to post, answer FM's or emails very often but please know that I certainly do appreciate all the love and support! Keep it comming!

10.31
I am happy to report...Chemo and radiation are now DONE!
Let the healing and hair growing begin!

11.05.06
I added a video today. This video is of me ringing THE bell at MD Anderson. The bell is rung whenever someone ends thier treatment of radiation. After 62 treatments, I was ESTATIC to ring that bell. The light is not the best, but I am so glad to have had a chance to do this.

Ringing of the Bell


1.20.06
I have an infection that is creeping thru my body AND I have pneumonia. I have been responding well to meds so my doc is going to let me go home and continue treatment with a home nurse. I did have to promise her that the second my stats change that I let her know and we check me out. We did get confirmation that the stuff removed from my lungs is NOT metastasized cancer which is a relief because the lungs are the number one place that ACC spreads.
While in the hospital we have learned that we did shrink the tumor in my head but we did not get it all. My doctors and I will be doing more tests over the next few weeks so that we can get a better view of my head. From there we will make a decision as to whether or not this is not resectable and a craniatomy is in order.
Put your seatbelts on, its gonna be a bumpy road!

2/13
So I went in at 2:30p (with the entire family in tow) for my appointment, after waiting for this news for over a month. I get there and they tell me that I don't have an appointment. Umm, huh? WHAT? The person who was checking me in was brand new, not someone I had buttered up in the past so I wasn't sure if they would try to fit me in at all. Lucky for me, the doctors new nurse WAS my radiologists nurse (Since I had to go twice a day I became close wth a lot of that staff).
Anyway, the nurse came out to me and assured me that we would get taken care of.

Dr. S let me know that before ANYTHING happens we need to get another MRI. The one from when I was in the hospital was not as clear as everyone would like. So first things first...we get another MRI done in the first week of March.

After we get the results of the MRI we need to go in and get a biopsy done endoscopically. This is because the mass is still there and an MRI doesn't perfectly show which are dead cells and which are live cells so we can not be 100% secure in how successful we have been.

Next step is surgery. Medical Maxillectomy is the surgery and Lateral Rhinotomy is the way the incision will be. The incision will start at the middle of my upper lip go up my nose, turn left and follow the side of my nose up to my eye, then he will cut underneath the eye and pull back that side of my face The mass will be cut out by going thru my broken sinus section.
YOWSERS!

On top of that, he believes that during this surgery my eye should be removed. He wants to wait to talk to my eye specialist before saying if a prosthetic can be put in at the same time.

SO that is that. I went in prepared for the worst news (which would have been "I'm sorry Mrs. G there is nothing more that we can do.") So in that regards I feel like it was fairly good news.

It has yet to be determined if the surgery will happen here or if I will head to MD Anderson in Houston (or perhaps somewhere else all together). The surgery could also take up to 12 hours my poor family in the waiting room.

A much needed and requested update 6/5
Thank to everyone for the FM's and the support. It has been overwhelming, inspiring and much appreciated.
Today is the day I have been waiting for. On Friday I went in for a detailed head MRI as well as my first PET scan and today is the day I was to receive the news.
I wish I could say I was cancer free, I wish I could say I was a survivor, I wish I could say I beat the crap outta that disease...but I can't.
In fact, I can't say anything new, really
What I can say is that there is still "something" there. No one seems to be able to tell if it is Scar tissue, live cancer cells, dead cancer cells or perhaps just reactions to radiation. I thought that the pet scan was going to help us finally determine that, but apparently I was misguided.
What the PET scan did tell us is that the cancer has not spread thru the body so YAY on something!
My oncologist recommends head surgery within the next few weeks so that we can go in and get whatever it is that is there however, my head surgeon recommends waiting for another MRI in 6 weeks. It seems to me that I might need to go back to Boston and speak with my other team of doctors as these guys aren't agreeing (why they didn't get on the same page BEFORE I came in, I have no idea). The surgeon did however say we should get surgery done because we should get whatever we can out now otherwise it could grow and he might have to tell me "sorry, there is nothing more we can do." The exact words and phrase I DON'T want to hear. I would think because of this that we would want to do surgery sooner.
Both doctors just stumbled over their words, stumbled over my case and told me I am in such a grey area....each ended with "but you look great." yeah whatever, I don't care...stop your paula abdul way of handeling this.
Ugh
again
ugh
If I take out the words of these doctors and go off the words of the radiologists report, well than, I still have cancer.
I am more lost and more confused than ever. I thought today, after one year of confusion, I would finally have an answer.
yeah, so, I just don't know what I got out of today but confusion and more fustration.
Yes, I know, be happy it didn't spread.

7/31
Wow almost two months since my last update. Many people remembered that I was supposed to have a follow up MRI 6 weeks after the last appt and have been asking for updated news so I decided it's time to update everyone.
and the update is that thre is no update. There wasn't much change in my MRI (on one hand, WAHOO
no spreading!) there is still "something" there we still don't know what it is (live cancer, dead cancer, scar tissue or reaction to radiation). I go back at the end of Oct for yet another PET scan to see if we can ascertain ANY more info. One bad thing is that day to day I still live in extreme pain and nothing seems to alleviate this condition.
One GOOD thing is that my doc believes if we do go ahead and do surgery soon that the last proceedure (the maxillectomy with hundreds of stiches on my face) won't be necessary and that he can probably do it by going thru my gum and cutting up into the sinus.
So good news, bad news, and ok news.
Basically, yep still grey and still waiting.



10/25/2007
Met with my Head surgeon today to receive the results from the Pet scan I took on 10/22/07. We had some good news and some aaa not so good news. Let's go with the good news first. The Pet scan came back as negative pet in my head. It seem as there are no longer any live cancer cells in my head! WAHOOOO There is still a mass there which is what still causes my pain but it's not cancer so I have to celebrate that fact. I beat odds. I beat serious odds that many people didn't believe I even has a shot at.
The bad news is that the Pet Scan showed markings on my Lymph Node and in my right lung. I asked the doctor had worred we should be on a scale of 1 to 10 (1 being not at all, ten being the most) she gave us a 7. So it's not the worst but not a three so it still freaks me out. This coming week I will be meeting with another team, taking some tests and getting a biopsy from the "stuff" in my lungs. The following week I will meet with the pulminologist adn my oncologist and we will figure out our approach.
The words Chemo and radiation were being thrown around the room today as i just sat there in a bit of disbelief. I went all girly and was like, wahhhh I JUST got my hair to a place where I feel comfortably with it and now it is going to fall out again.
WAHHHH
Yea,honsetly not my biggest problem nor where I should focus my attention but I felt like being girly today about it.
It's just a lot to take in but I'll get through it . In a few days, silly, sarcastic, fighting Debbie shall return.
Jsst need to cry it out a bit before that can happen,

11/7 update
There is no cancer in my lungs and no cancer in my head. That means right now I am cancer free and in REMISSION

3/27/2008 update
As some of you know, I have been ill and was admitted into the hospital this week.
After a bevy of tests we discovered that I have 4 nodules of Adenoid Cystic Carcinoma in my brain. This is a little different from last time as last time it was in my head but hadn't exactly made it INTO the brain.
LIF- if youwould like to move this to health board, please do so. As the thread was created pre-health-board and instead of starting a million new threads I have always leaned towards just updating this one thread and allowing people to read if/when they want.

Update 4.9.08
I am now up in Boston looking to get my eye removed. I finally will!!!!!It will happen in a week, the 16th. I thought I would be very excited about this, however, mixed in with the excitment there is fear and a quezzy stomach. Anyway the following monday I will go in again to see how everything is doing and if everything is AOK then I will fly hom that night. Also, tomorrow I have an appointment with Dana Farber about the lesions in my head. I'm so interested what the doctor's there have to say.
That's all going on with me. Just basically sitting in my sisters house sleeping all day.
I will TRY to keep everyone updated after each visit


4/10/08
Today was my appointment at Dana Farber. I specifically met with Dana Farber who is the Director for the Center of Head and Neck Oncology.As I have stated before He's been involved with my case since the begining. Anyway Doctor Posner and his team looked over my films over and over again. Heck gave it one more look just to make sure they weren't saying something to me which was wrongl
Anyway, Dr Posner told me today that what he sees is called Radiation neucrosis (I might have butchered that word) and with that it means is that I don't have cancer in my brain. The radiation Neucrosis happens in about in about 25% of people who have sinus cancers. I won't get better but probably can get a little bit more for a while and then come back down to where it is now.

Yahhhehheeeehhhhhahhaaa NO CANCER

Message edited 4/10/2008 10:44:17 PM.

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Deb, you are NOT posting too much.

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oh thank god DEb.

Don't be silly, we all care so much about you that we want to know how you are doing.

You remain in my thoughs and prayers.
Stay strong girl !!

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I'm so sorry that this is happening Deb. I don't even know what to say

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Oh Deb....

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you are certainly NOT posting "too much" - we appreciate the time you're taking to keep us all updated.

That said, I have more

You're in my s

Lets look on the bright side - MINI MUFFIN IN LESS THAN 4 WEEKS!!!

Re: Today's doctor update

Deb-so sorry to hear this. I guess I was out of the loop.

Do you have a surgeon?

I'm just going to say prayers for you and your family.

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i am glad they will be able to get the tumor out after they take the baby I will continue to pray for you and know i will alway's be here for you!Love ya.

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Just try to stay positive and prepare as much as you can for the arrival of the baby-- and hopefully after all the tests, the Docs will know exactly what to do and this will be all in the past. It will all be a whirlwind experience-- but try to stay focused and positive.

DH's aunt is a neurologist-- if you were interested in any other opinions or just asking some additional questions.

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Oh Deb

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You are not posting too much -- thank you for the update.

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Still praying Deb

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I was waiting to hear about how you were feeling...please do not EVER think you are posting too much. There are a lot of people that are worried and praying for you...

Lots of hugs and prayers being sent your way

You sound like you have a clear plan...I hope things go according to it and mini-muffin stays healthy and strong just like his mama!

Message edited 5/24/2006 3:38:47 PM.

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OMG I had no idea!! God bless you Deb!! Many, many blessings for you and your baby!!

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Poor thing...how scared you must be. I admire your bravery and strength and I am continuing my prayers...

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Deb, here is something to brighten your day.

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Deb, thank you so much for the update. I have never met you but have been thinking of you sooo much.


I continue to offer all my
and

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I really, truly, honestly believe in the power of prayer.

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Deb,

If you didn't post we would worry about you!

Please keep posting!!!

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My mom had a brain tumor and it was a B!tch to get out but we had a really great surgeon. We were worried beyond belief, but it worked out and she is fine.

I just thought I would tell you about a very good outcome.

Good luck to you and please keep us posted..any little thing you want to talk about..we are here.