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This has been my journey thus far (compiled from another website I post on):
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
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 baby 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 Joseph can come out! I am 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 Joseph 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 means 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
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) artery (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 think the good thing is that I will 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 re-assuring.
We learned that I do in fact have Adenoid cystic carcinoma and it's more than likely a T4 cancer (this will be confirmed when MD Anderson receives 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 ht\\the 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 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 ia 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. Dr. 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 sucks 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 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 round 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 sick and very tired
not sure how much I will continue to update, while I feel like this.
Thanks all!
9/2
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 can't 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 and a 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, it's huge!
As for me. I have sores on my cheeks, 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 it's 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 feeding tube put it. It's 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 bald but I don't think it will be AS hard to watch.
OOh and just because this is my life...AF arrived (hindsite or so I thought)
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 got to ring 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. I am so glad to have had a chance to do this.
1.20.07
I have been in the hospital with an infection that is creeping thru my body via my bloodstream 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/months 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, it's 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.
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
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 baby 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 Joseph can come out! I am 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 Joseph 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 means 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
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) artery (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 think the good thing is that I will 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 re-assuring.
We learned that I do in fact have Adenoid cystic carcinoma and it's more than likely a T4 cancer (this will be confirmed when MD Anderson receives 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 ht\\the 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 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 ia 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. Dr. 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 sucks 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 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 round 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 sick and very tired
not sure how much I will continue to update, while I feel like this.
Thanks all!
9/2
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 can't 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 and a 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, it's huge!
As for me. I have sores on my cheeks, 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 it's 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 feeding tube put it. It's 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 bald but I don't think it will be AS hard to watch.
OOh and just because this is my life...AF arrived (hindsite or so I thought)
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 got to ring 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. I am so glad to have had a chance to do this.
1.20.07
I have been in the hospital with an infection that is creeping thru my body via my bloodstream 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/months 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, it's 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.
