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Old 10-26-2008, 08:19 PM   #31
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Prayers said for you and your husband.

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Old 11-02-2008, 05:04 PM   #32
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Hello there, we are just back from a short weekend at Myrtle Beach before my DH goes back to see the Oncologist/MRI etc. on Tuesday. I thought it might be nice to get away before the second round of chemo begins. I honestly had such a difficult time relaxing this weekend. All I could think about is what will the MRI show, has the tumor gotten larger, stayed the same, shrunk? What next with his Chemo, handling his Expressive Aphasia--which is good some days and not so good the next. Couple this with setting up COBRA, life insurance, insurance, hospital bills etc...I feel so darn overwhelmed I feel like my head is spinning around. I know people tell you to take care of yourself too, but seriously how?

It made me so happy to see him smile and take everything in, almost looking at life through the eyes of a child. Sometimes I do feel like a Mom instead of a wife because cognitively he is left with very poor short term memory and retention. I saw other couples walking, talking, hugging and myself wishing that life would go back to the way it was three months ago. I know that will never happen, I should just make the best of it. I keep telling myself that God will never give me anything I can not handle. I am still trying to become a "believer" I guess.

It is amazing to me how people treated us so differently. The stares at his scar, the men more so than the women. I guess they try to picture themselves in that position and get the deer in headlights stare. I actually booked two tickets to see Larry the Cable Guy, I still can't believe I did that
. He was very funny and one lesson I learned is that although he made fun of everyone, an equal opportunity offender, as I called him. I learned that it is ok to laugh. I just wish I can continue to smile at life in the months to come.

Please wish us luck on Tuesday. I pray for good news but have to be ready for what is to come. Thanks for taking the time to read this.

Have a good evening!!

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Old 11-02-2008, 05:09 PM   #33
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You have a wonderful attitude. I will keep you both in my prayers.
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Old 11-02-2008, 05:13 PM   #34
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Lisa, I'm glad you were able to get away together. I hope & pray Tuesday goes well. I know how difficult this whole experience is for you. Keeping you both in my prayers.
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Old 11-02-2008, 05:44 PM   #35
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Lisa.. hang in there, we scan tomorrow... results on Wednesday.. just know you are not alone in what you are going through.. I dread having to start chemo again...
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Old 11-02-2008, 06:42 PM   #36
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I am so sorry. I will be praying for you all.

My sister was recently diagnosed with breast cancer. She is only 36 and has 2 young boys. So, in a way, I know where you are coming from. It's a terrible place to be in.

I will be hoping and praying for the best for you all.
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Old 11-02-2008, 09:28 PM   #37
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Thank you all so much for listening and offering you well wishes to us. I find myself coming to this forum so much lately as it gives me a place to be heard but not judged. I feel so alone sometimes and when I am here, I am able to reach out and find solace.

Mackey Mouse best of luck with the scan tomorrow and I will be praying for good results. It seems that we will be hearing results a day apart. Let's pray for the best!

Safetymom and karen, thanks for the kind words, they mean so much!!

ScrapperBelle, thank you for sharing your story, I hope and pray that your sister will do well with treatment and will feel better. It is nice to share our experiences, it helps us cope.

God Bless you all!!

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Old 11-03-2008, 06:31 AM   #38
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You are in my prayers. Remember it is one day and sometimes one moment at a time.
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Old 11-03-2008, 10:16 AM   #39
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Prayers and . You are in my thoughts today.
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Old 11-03-2008, 03:51 PM   #40
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You and your DH are in my thoughts. Good luck tomorrow.
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Old 11-04-2008, 08:03 PM   #41
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Hi Lisa....I just wanted to send HUGS ! I lost my husband (49) in July to colon cancer....he battled it for 5 years and NEVER COMPLAINED!! We too spent our honeymoon at WDW at it was our "HAPPY PLACE." Now....We have been 2 times since July...the girls feel close to him there! Take care of yourself too...I used to forget to do that because I was so busy taking care of evryone else.

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Old 11-06-2008, 12:00 PM   #42
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update on DH's MRI scan...

Hi there. My DH went back to have his scan on Tuesday and later met with his Oncologists. At first glance it appeared that the tumor might have actually shown some shrinkage. Of course this was cited by his Oncologist. When the Radiologist read the scan they saw an area on the posterior region of his tumor that may have seen about a 2% growth. (a rim around the back the tumor is how it was described to me). I was told it was not a cause for concern, that it might be necrotic tissue and also he could still have swelling from the radiation treatments. Apparently it is not uncommon for the scan to actually look worse after round one of treatment. I only hope this is true.

On one hand my father who is an Anethesiologist told me that he felt as if it was good news as the tumor seemed unchanged, however I am fixated on the 2%. I only wish I understood more about how this will impact my DH. I honestly had a nightmare thinking they would do the scan and the tumor would have increased to the initial size so for that I should be thankful that it was only a bad dream.

So with that said, my sweet husband has started a five day "booster dose" of chemotherapy. We have gone from 180mg of Temodar to 500mg for five days. Pretty intense as was realized this morning when he woke up and felt so horrible and nauseated. Thank God for Zofran. It makes me so sad that for the last 28 days he started to feel better as he was on a break from treatment and in one day he goes back to square one. It is so painful to watch his face when he goes to take the pills but he keeps such an amazing attitude that he keeps me going.

I have a chemo holiday planned for us in December but each day I get nervous as to how he will feel. I want him to see Disney again as it is our "magical place" and I know it will make him smile. I talked with his doctor about possibility of us flying to Orlando. He said that he could but he thought it might be better to drive in the event that he got sick. He said it would be easier to get help. I only wish it was not a 10 hour drive from NC. I have scoured the internet to see if Brain Tumor patients can fly and the only information I get directs you to agencies that will fly patients for treatment in other cities/states. Obviously there is risk for both modes of transportation and of course my thought was 10 hours in a car would be exhausting versus a direct flight (roughly one hour fifity minutes). Does anyone have any insight into this?

So we will forge ahead and hope for a better scan next month!! We will be going to see the Neurosurgeon, Dr. Friedman on Tuesday to get more insight on Clinical trials and where we go from here so wish us luck!

Thank you for letting me talk out loud. I am trying so hard to keep a positive attitude and level head!! If it wasn't for the kind friends, family and this forum I think I would go crazy!!

Have a magical day!!
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Old 11-06-2008, 04:52 PM   #43
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Wow, Seaprincess, what a brave and couragous lady you are. You seem such a strong lady and I'm so pleased that you and your DH are getting to spend a couple of days away at WDW in December.

Thoughts and prayers are with you and you husband at this trying and difficult time, stay strong, as I know you will. Your DH surely knows how wonderful you are, but I just want to mention again - you're an inspiration to us all, please keep the faith
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Old 11-06-2008, 06:35 PM   #44
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The non stop ups and downs are so hard aren't they! I know what it's like to cling on to any slight positive piece of news while inside really feeling unsure and doubting anything and everything. It is that rollercoaster of emotions that takes its toll.
You are taking things day at a time, and are as strong as you can be. I send you both hugs and good wishes.
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Old 11-08-2008, 02:30 PM   #45
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I think I would opt for the less than two hour flight. You can have wheelchair assistance at the airport right to the gate, and again when you land in Orlando. I think the drive down would ultimately be more exhausting for him. Best wishes on planning your holiday and his continued success with treatment..
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