Not the best news-CarePages

Not the best news

Posted Dec 30, 2011 9:54am

Edit: REPOST FROM CAREPAGES

We went to the Neuro Oncologist yesterday and were hoping to get some good news and find out the next steps for my treatment.

We found out that the neurosurgeon only removed 30 to 40 percent of my brain tumor and my neuro oncologist has contacted another neurosurgeon to see of the remaining amount can be operated on....so I may have a 3rd brain surgery. He also told us what type of tumor I have, which was different and not as good as the first type we were told I have. It is still a mixed glioma, only now it is mixed with astrocytomas (which has fingers that get into the good brain tissue).

If I do not get another surgery, I will have to get chemo for 24 months.

Sean and I have decided that the surgery is our best option, only because I will only have to be monitored for the rest of my life, instead of going through chemo and radiation.

The Neuro oncologist also told us when we asked that my life expectancy is 5 to 10 years on a bell curve, so possibly more because I am young and healthy.
We also spent Monday night in the ER after my legs started cramping up during the night. The ER doctor thought they may have been small seizures (which is not good when I want to get my license back and have to go 3 months with no seizure activity!)

Diagnosis- CarePages

Diagnosis

Posted Dec 22, 2011 8:52pm

Edit: REPOST FROM CAREPAGES (I have to laugh at this one too, "monitored for a few years"....boy was I given the wrong information, again poor choice in surgeon who we got all the info from)

My Pathology report came back today and the type of tumor I have is a grade 2 mixed oligodendroglioma. The doctor thinks that this is the best possible outcome, I'm not totally convinced after googling it. I have been referred to an Oncologist at UCLA and another closer to home at UCSD. We hope to get in soon and figure out the next steps for me, which we are hoping is just to be monitored for a few years and nothing else.

Role Changes- CarePages

Role Changes

Posted Dec 19, 2011 4:38am

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So there have been many changes around our house and the role changes are huge right now. Everyone has a new role in our house and it’s been difficult to make some of the changes, especially for me!
I’m having a difficult time of breaking out of my mommy-do it all/take care of all role and sinking into the child-let everyone else do it for me role.
Josh is steping up to be the man of the house and loves taking care of me. He was the one who was in charge of putting Neosporin on my staples after my biopsy, a job he loved! Now he’s very protective over me and since he’s been sick he constantly reminds me I’m not allowed to kiss him, as heartbreaking as that is he always tells me.
Zach is little Mr. Helper, whatever I ask of him, he does. He brought most of our luggage in the house when we came home from the hospital. He’s always looking around the house for something to put away, which is not hard to find something in our crazy household.
Baby Ben unloaded the dishwasher last night all by himself and only scared me when he started singing a little song about knives while putting them away. He even put stuff in the right place, which is better than anyone else in our house who unloads the dishwasher…I think he’s got a permanent job!
Faith seems to be stepping back a bit out of concern for getting hurt. It breaks my heart seeing the concern on her face, but she is older and understands quite a bit more than her brothers, so she has every right to keep to herself for her own peace of mind and protection. But it has been difficult to me seeing her fear.
I think I have been the worst at adjusting to the new roles. It is so hard to sit back and have every step of mine babied. I’m mom, let me do my thing! Guess I should just try to enjoy the special treatment a little. Maybe I’ll start tomorrow off with a foot rub from the hubsters!

New Surgery Date- CarePages

New Surgery Date

Posted Dec 8, 2011 11:19am

Edit: REPOST FROM CAREPAGES

We are 95% sure the surgery will now be on Wednesday, December 14th. The extra time comes as such a relief.

I'm still not sleeping very well, but last night the pharmacist said that I didn't have to do every 12 hours with the steriod (which is keeping me up) and that I should take it with dinner and breakfast. Then the anit-seizure meds every 12 hours exactly and if I take it around 8pm, she thinks it might help me with sleep. Last night I got 3 hours of sleep. But I am really enjoying online Christmas shopping in the middle of the night! New packages are arriving at our house daily!!

Thank you all again for all of the love and support.

Goodbye Hospital- CarePages

Goodbye Hospital

Posted Dec 16, 2011 11:08pm

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I'm now out of the hospital and staying at Sean's parent's house. It feels great to be out and other menot be woken up every few hours with a shot or blood withdrawl! But I did find a way to sleep at the hospital, I just put ESPN on and listened to Tebow stuff all night and slept like a baby! I'm looking forward to getting some sleep tonight and they are weaning me off of the steroids so I should be able to sleep and get rid of some of the side effects that really bother me. I'm looking forward to Sean driving us home to my own house tomorrow and sleeping in my own bed and getting somewhat back to normal.

Killer Headache- CarePages

Killer Headache

Posted Dec 15, 2011 9:41am

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I'm lying in my hospital bed reading through all of your kind words and am overjoyed with the results, just had another mri at midnight and can't wait to see the new pictures. Sean can run down and get a copy. I'm sure he will post a picture like the other ones. I've been on a liquid diet and have been able to keep it down. I should be getting some solid foods for breakfast soon and some pain relief. . .I'm not sure if the IV in my left hand hurts worse than my head or not.

Best Possible Outcome- CarePages

Best possible outcome!

Posted Dec 14, 2011 8:27pm

Edit: REPOST FROM CAREPAGES (I have to laugh looking back at this post as the surgeon was like a car sales man and didn't do a good job, he hardly removed anything. He was so cocky that he wouldn't admit to only removing a portion of the tumor as he wasn't a tumor specialist and was too proud to admit it to us....lesson learned and we only used tumor specialists after this surgery).

Mel want me to post the scoop. Here's how the day went:

6:00am arrived at hospital
7:00am got a bed in the preop room
8:30am got wheeled into the OR
10:00am I got an update from the nurse that they just made the incision.
10:45am I got a call from the nurse that says the doctor is coming to talk to me. I panicked thinking the worst because it has only been 45 minutes.

11:00am The doctor told me every single word I wanted to hear. He thinks he removed all the bad tissue. The cells looks just like regular brain tissue. The tumor is most likely a low grade glioma meaning a grade I or II. She will likely not need radiation or chemo just occasional scans of the brain to check any abnormal growth.

1:00pm I got to see Melanie in the recovery room. She looked great, talks great, asked me to fan her with a palm leaf and to order her some bon bons.
5:00pm She got transferred to the ICU where she'll spend the night. Tomorrow if there is room, she'll be going to a regular room. Possibly get to go home Friday or Saturday.

I personally thank you for being there for us! All of your comments and posts have been extremely uplifting for both Melanie and me.

Keep checking as I'm sure she'll post an update soon.

Sean

Out Of Surgery-CarePages

Out of Surgery

Posted Dec 14, 2011 5:45pm

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Melanie is out of surgery and doing well. Her head is in a lot of pain. The surgery went as planned and she would like to post the details when coherent.

Sean

December 14th @ 8am- CarePages

December 14th @ 8am

Posted Dec 8, 2011 7:24pm

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My surgery date is set! It will be Wednesday, December 14th at 8am, but I have to be there at 5am.

Tomorrow I will be going up to UCLA to get all of the pre-op stuff taken care of and to get an MRI. We have to be up there at 7am, so I guess it's a good thing I don't really sleep. I'll be up and ready for the drive before the sun comes up.

Surgery Scheduled- CarePages

Scheduled Surgery

Posted Dec 7, 2011 6:03am

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What a day it was yesterday. I went to bed at 8pm with my boys and woke up at 10:30pm and never went back to sleep. (I just woke up from 4 hours of sleep; it’s 2am, which is a long stretch for me on these steroids). We started the day off with the feeling that every neurosurgeon we had been referred to had a long wait for an appointment. We were fairly certain that we were going to use the neurosurgeon that did my biopsy since he had the time for us. Yesterday morning, while I was being showered in prayers from my Bible study group, Sean received a call from a highly recommended neurosurgeon at UCLA who had just looked at my pathology reports and scans. He squeezed us in last night for a 5pm appointment. Before we even arrived for the appointment we had a surgery date set aside for us and knew that the doctor was willing to perform the surgery himself and see us through this process.

At the appointment, we went over all my reports and scans. He even took my staples out of my head (which I will never be afraid of again). We went over the multitude of side effects I am having from the medications. Yesterday morning I woke up with a fat chipmunk face, apparently steroids make your face swell! And it’s funny because the day before I thought my moisturizer was working really well! I’ve also had joint pain, 5 lbs of weight gain in 2 weeks, heartburn, sleepless nights, a little memory loss, etc. All of that will go away when they take me off of the steroids a week after the surgery.

The neurosurgeon has a plan for my operation, different than the previous doctor we were going to use, and I like it a lot better. Instead of a shaved head, a horseshoe size cut, and a 2x2 or 3x3 chunk of skull being removed and replaced to do the operation, I will get a smaller section of hair shaved, so I will get to keep some! He’s going to double the size of my shaved spot which is now about 1x2 inches and extend the incision I already had done by about an inch. He will then use make the nickel sized hole quarter sized and operate through that. The tumor is a little larger than an egg and he will use suction to get it out. He also has so many tools and machines that will be used during the surgery, such as a continuous MRI hooked up to my head so they can watch and see exactly where they are during the surgery and what they are taking out. They also will do a biopsy first and use a neuropathologist to do determine they type of tumor and then continue with the removal plans based on the type. At Scripps, they used a general pathologist when they didn’t get a good biopsy. They also used a general anesthesiologist where at UCLA it will be a neuroanesthesiologist whom all have around 20 years of experience. Everyone along the way will be trained in their field as well as on the brain. It is just so much more comforting. The doctor seemed to have such a great team and said that he would do the entire surgery. (I have been a little concerned about residents doing my surgery if we went to a teaching hospital). This neurosurgeon has been doing surgery for 30 years and teaches all of the newest procedures and they have all of the latest equipment. I just feel so comforted by all of the advances and specialized care I will receive. So I signed the consents last night and will have the operation on Friday, December 16th in Los Angeles (where we moved to San Diego from and still have family up there to stay with). I will be in the hospital for about 4 days and be home in time for Christmas!

The only bad news we received was that he thinks the tumor is a grade 2 or 3 glioma, based on the images. We will figure out the next steps after he knows for sure what type of tumor it is.

Thank you all for your love and support and prayers. Yesterday my mom and I were talking about that “Footprints” poem, and this is a time I feel there are only one set of footprints in the sand! I’m being lifted up and carried through all of this.

Second Opinion- CarePages

Second Opinion

Edit: REPOST FROM CAREPAGES

Posted Dec 6, 2011 1:19am

Today we went for our second opinion. We met with a neurosurgeon that no longer operates , but gives second opinions. He seemed to agree with Dr. Leary, the doctor who did my biopsy and will possibly do my brain surgery on Thursday.

The type of tumor I have can't be determined and both doctors think the best thing is to take it out as soon as possible.

We are awaiting our 3rd and 4th & 5th opinions tomorrow from out of town and out of state and will let you know how they go and will most likely have a final decision by tomorrow night on what we plan to do. It’s so easy to get second opinions now days with having copies of our all of my images and lab reports. We just got a response from a doctor in Maryland at 10pm our time! He just asked for one more view and said he would call in the morning, so not an opinion yet, I’m just so amazed with technology.

We really appreciate all the prayers and support from all of our friends and family.

Welcome to CarePages

Welcome to CarePages

Posted Dec 3, 2011 12:24am

Edit: REPOST FROM CAREPAGES

After a week and a half of not knowing anything except that I have a brain tumor, I was looking forward to getting some info from the doctor. The first pathology report from my brain biopsy came back inconclusive. Sean and I went to the neurosurgeon yesterday and the the second pathology report came back inconclusive as well. The tumor is clearly visible on all of my brain images and now the neurosurgeon is concerned about the tumor surrounding arteries. The arteries pose a whole new set of possible side effects and in going over those with the doctor was the first time it really hit me. They may not be able to get the entire tumor out and may have to use chemo and radiation after the surgery.

My neurosurgeon scheduled my brain surgery to remove the tumor for Thursday, December 8th. We have an appointment on Monday to get a second opinion and will also have a doctor from UCLA look over the images and pathology reports that same day. Now we are just trying to make sure that we have the right plan of action.

My kiddos are are all doing well. It's fun seeing their caring nature come out of them and they all show it in such different ways than I would have expected. I'm looking forward to spending this weekend with my family and spoiling my kiddos. I'll update this as regularly as I can or have someone else post an update. Thank you all for the love and prayers. I fell so blessed!