My husband's journey with brain cancer...update

[seaprincess]

Hello there, as an avid DisBoards supporter for many years, I have found myself reading all the stories on different forums. It has been a while since I have had time to post as my husband fell ill at work on July 28th. I received a phone call from my husband's boss telling me he was being rushed to the hospital for what they thought might be a stroke. I somehow got to the hospital and to my dismay, they discovered a mass in his left temporal lobe. Because of the size of the tumor, it actually started to bleed into his brain causing it to swell. We are lucky enough to live between two amazing hospitals and were fortunate to have Dr. Friedman at Duke University (same surgeon who preformed Senator Kennedy's surgery) operate on my DH. Much like the other post I read about on this forum, they were able to remove about 90% of the tumor and told us it was a low grade malignancy. Not that it is something to be hopeful about, but we thought it was better than what we had expected. Unfortunately, days later, we received the pathology report and found that it is Stage 4 cancer, a Glioblastoma Multiforme (GBM) , which does not offer the best prognosis for longevity and quality of life.

Sadly my DH is left with expressive aphasia and struggles to find the correct words sometimes. Also he was paralyzed on his right side and by the miracle of God and physical therapy, he has regained the use of his right leg and is slowly working on simple movements of his right hand. He has just completed his first round of chemotherapy and radiation and has a three week respite and he goes back for his second round in November.

Our lives turned upside down in one day. Sadly my DH is only 39 and I have had the honor to be married to him for 13 beautiful years. I can not imagine living life without him as we have loved each other for so long. It is sad how quickly something precious can be taken from you. I cherish each and every moment we spend together and thank God for letting me share my life with him.

I pray everyday for a miracle. I know it does not happen often but I try to keep the faith. My husband's Oncologist has encouraged me to take my DH on vacation and I could not think of a more appropriate place than Walt Disney World. We spent our honeymoon there, each year since for vacation and a year ago in December we renewed our Wedding Vows at WDW in the Wedding Pavilion. I will cherish these memories forever. I am in the process of planning a vacation and I pray that he will be well enough to travel. We have been fortunate to this point since he is young and in good health. After reading the OP's story of her Mom, it is so sad that such an aggressive tumor can take someone's life in three months. My heart and prayers go out to her.

Thank you for taking the time to read my story, I felt like needed to talk about it. It makes me so sad, but I have also found strength from within. I think what they say is true, "Love conquers all".:hug:

[mommasita]

I am so sorry for everything..:hug:
Being the same age as your DH, as is my DH, this really hit me hard. Any age is too young, but this is really just so young to me.

I hope and pray that things continue on a good path.. Your marriage sounds wonderful. You are lucky to have each other. :grouphug:

[seaprincess]

Thank you so much for your thoughts. I am still coming to grips with this and am not sure if I ever will. I never thought at 40 years old, I would be planning anything other than our future together. Life takes turns for very mysterious reasons that I don't think I will ever understand.

[CHES94]

Oh seaprincess, I am so sorry:grouphug: . My DH is also 39 and we have also been married for 13 years, almost 14.

I know what it is like to go through acute and chronic illness with DH-two years ago DH had a liver transplant for an autoimmune disease he was born with and we live month to month with labwork.

Take care of yourself, I know how hard it is to remember to take care of yourself when you become the glue that holds the family together.

Feel free to PM me if you ever just need to talk.

Hang in there.

[Mackey Mouse]

SeaPrincess...I would take my husband to WDW after chemo treatments, when he would get a break, it was and still is our happy place..

Hugs to you and prayers for your husband.. Everytime I read another Cancer one I think, please let them find a cure in our lifetime...

Take care of you too, take that trip and soak in all the magic.

[Elfstar]

Seaprincess, you have my sympathies and empathy. I thought we were too young for what Jim's going through - you two are, too. By all means, go and have a wonderful time! Make as many memories as you can - that's what we're trying for, too. Jim goes to the ALS clinic at Duke - they are wonderful there. It's about three hours away for us but worth the trips. I'm here if you need an ear and a shoulder. :hug:

[seaprincess]

Thank you all so much for your words of encouragement. It has been a day by day process and a lot of learning on my part. We do not have any children, therefore it has been he and I managing a household. All of a sudden, I am faced with so many responsibilities and it is a bit overwhelming. I am learning each day and challenge myself to take on new responsibilities. I work full-time and am fortunate to have a Dad who is retired and sits with my husband from 8:30-5:30pm and transports him to all dr. appointments and chemo/radiation. It is truly a blessing. It also gives me an opportunity to put my mind into something else for 8 hours a day. I feel sooo guilty leaving him to go to work, but if I don't work then we can not afford to live.

I am looking forward to spending five beautiful days as WDW with my dear Ben in December. We celebrate our wedding anniversary each year at WDW and hopefully this year will not be the exception. I am trying to make this vacation the most Magical and Memorable. I only wish they had a Make a Wish Foundation for adults too. I want to give him the world and let him know how truly special he is and how much I love him.

Sorry to ramble, just sentimental.

[karen l]

Seaprincess, I'll be praying for you & your family. My DH had lung cancer & the ordeal is so hard on the entire family. I know you have to take on so much more responsiblility but make sure you take time for yourself - it's very important. It's great you've found doctors you can trust - we ended up switching from the hospital my DH's doctor recommended to Dana Farber in Boston. Having great doctors who work with you & your family really is vital.
Take care of yourself & when time allows please let us know how you & your DH are doing. Best wishes to the both of you.:grouphug:

[seaprincess]

It is so nice to be able to share my story with you all. I really believe that I have been so fortunate to be surrounded by so much love and support. What amazes me is that there are so many people going through very similar ordeals and it helps me to know you can reach out and get support on this forum is priceless.

I am so humbled by the magnitude of cancer and it's impact on not only the patient but their family and loved ones. I only wish in this lifetime we can find a cure. I only hope that I have given enough love and support to sustain him. He will never know how difficult this has been for me, only that the love I have for him is eternal. He needs me to be strong, and I am trying so hard.

God Bless All of You!:grouphug:

[CarolAnnC]

Thank you for sharing your story here with us. I know it is not always easy to open up on a discussion board. But you will find many compassionate and caring people here who will listen and offer hope and prayers. And this is what I offer you too - I will pray for your husband and hope for a cure for him. Take care of yourself too..it is very hard on the care giver as well. Hugs..

[Mackey Mouse]

Being a caregiver myself, I also reached out to a support group online just for Pancreatic Cancer caregivers, it is a powerful place and it makes me thank God for my blessings each day as you realize there are others there going through either more or the same thing you are..

Not sure you have time for that, but something to think about and pm if you are interested in pursuing that with this online support group, I am sure there might be one for his type of cancer......not sure how I found out about it, I think my daughter suggested that this time around, we might need more help and sent me links..

Anyway, I would go for the best trip ever. Each time we go now, we try to do one thing we have never done before, even with all our trips we still manage to find those things. Sometimes we eat at our fave restaurants and sometimes we try new ones, but most of all, when he is tired, we go back and rest..we pace it to how he feels.. Living in New England, sometimes it just fun to go to FL where even at its worst, it is like to Spring to us.. we always go in the winter.

Also, if he is weak and cannot stand in lines and if in chemo.. not in the sun, I would make sure that you stop at guest services and get a disability card. There are two kinds.....make sure you get the one that allows you to bypass the lines. It is important as his time has to be well spent and so you will be pacing yourself to how he feels.......standing in lines for 30 minutes when someone is weak from chemo, is not what you should be doing. You may have to insist upon the one that allows you to bypass the lines as last time we had issues, a manager was called and the person almost got fired for putting us through what she was putting us through..

This is where I get passionate as sometimes people can be so unfeeling and look at the person and think well he does not look sick... Sometimes I think maybe I should have him pull up his shirt so that they can see all the scars from his whipple procedure or where the drains were and show you where he is losing his hair... I am just saying stand your place and fight for him to have that pass....if you feel he needs it.

[safetymom]

I will keep you and your family in my prayers. It is tough watching a loved one struggle with health issues. Remember to take care of yourself!!

[antmaril]

I am so sorry you are going through this - and you are both so young.

I lost my husband (55) to pancreatic cancer in July. He died five days before our 34th wedding anniversary.

I know what you are going through and I offer you my prayers.

I am so glad you are planning a trip to Walt Disney World. My husband was never well enough once he was diagnosed to have much quality of life. If you can take this trip, do it and enjoy every minute of it.

The only advice I have is to take one day at a time. It's the only way to get through it.

All the best to you and your dear husband. I will keep you in my prayers.

Marilyn

[kimis]

You are in my prayers.

[frdeb1999]

So very sorry. You and your family will be in my thoughts and prayers. :hug:

[seaprincess]

Thank you so much for your responses. It means so much for you to reach out to me and offer your thoughts and prayers. When I told my DH of all the wonderful messages we received he smiled and had tears in his eyes.

I am going to start making plans for our vacation for December. God willing he will be able to travel and appreciate all the parks.I am definitely going to go to Guest Services to inquire about the Disability Cards for him. I am not certain if he will be able to ride many rides, but if they are gentle enough I would love for him to enjoy the experience. One of the most amazing things happened this morning, when I called to make ADR's for our trip everything was so booked up already. A cast member from BWI Concierge put me in touch with the Manager of Le Cellier restaurant, my DH's favorite restaurant of all, I asked her if she could put us on a wait list and if something came available she could let me know. She actually was so compassionate that she made a reservation for us and I was so touched by her kindness. We will be celebrating our wedding anniversary that very day so this will be extra special. The Magic of Disney never ceases to amaze me. I just wish Mickey could make the tumor disappear.:angel:

I hope you all have a great afternoon and thank you all for being here.

[Jcricket Fan]

Please know I am keeping you and your DH in my thoughts & prayers.

I hope this web site can be of some help to you:

http://www.braintumor.org/GeneralMenu/

Peace be with you.
Colleen

[CarolynU]

You are in my thoughts. WDW is the very best place to escape the awful deal that cancer brings. You will find the strength that you need somehow, and lean on us when you need to.

[SueM in MN]

I am definitely going to go to Guest Services to inquire about the Disability Cards for him. I am not certain if he will be able to ride many rides, but if they are gentle enough I would love for him to enjoy the experience.
Sorry to hear about your DH's situation.
You should be able to find a lot of helpful information in the disABILITIES FAQs thread (link in my signature). There is information about Guest Assistance Cards in post #6 of that thread. Post #2 has information about renting wheelchairs and post #3 has some links to past thread that would be helpful.
One thing to be aware of - if your DH is using a wheelchair, he will need to use whatever is the accessible entrance/boarding area. If he's not, you may find that the regular line/boarding area is a shorter wait. For example, the last few times we rode on Small World, the wait in the regular line was basically as fast as people were able to walk in and walk onto the boat. Some boats were even being sent out partially filled because people were not walking up fast enough. Because we travel with DD who uses a wheelchair, we had no choice and had to use the wheelchair boarding area. Our wait was over 25 minutes.

[honugirl]

So sorry to hear of your husband's diagnosis. They do have make-a-wish foundations for adults. I think if you look up the kids make-a-wish, they have links to the programs that sponsor adults. They do have much stricter criteria, but maybe they would be able to help you out. Try these:

ADULT MAKE-A-WISH PROGRAMS

* Dream Foundation: Granting wishes for Adults with terminal illnesses (in the last six months of life)

* Fairy Godmother Foundation: Wish Recipients are adults, 18 and older, with a year or less to live.

* United Special Sportsmen Alliance: A non-profit Christian organization that routinely coordinates with other caring organizations worldwide in fulfilling a dream wish. If you know of a child [or adult] who is terminally ill or disabled and would like to go on a FREE DREAM HUNT, FISHING TRIP AND CAMPING OR CANOEING please contact U.S.S.A and we will try to fulfill their “Dream Wish.” Working with deer, elk, turkey, bear, pheasant farms, and property owners as well as, preserves and ranches has made our hunting, fishing trips and outdoor adventures known nationwide.


Good luck, I know that this is hard. I'm dealing with my own brain tumor, not as serious as your husband's, but I know some of the heartache that goes into finding out that you have a tumor and trying to figure out what to do with the rest of your life. I hope you have a wonderful trip!

[wuv tigger]

This is a quote from their website:

"Dear Friends of Fairygodmother Foundation:

I am writing with regret to inform you that after ten years of granting end of life wishes for terminally ill adults, the Fairygodmother Foundation will be closing its doors effective October 31, 2008.

As you know, this has been a very difficult year for the American economy which has created tremendous challenges for nonprofit organizations. Like many other organizations, Fairygodmother Foundation experienced a number of financial challenges over the last year that unfortunately we are unable to overcome. Therefore, the Board of Directors of Fairygodmother Foundation made the difficult decision at a recent meeting to dissolve the corporation.

We are extremely proud of what has been accomplished. Over 1,000 wishes have been granted in all 50 states, providing our wish recipients the opportunity to bring closure and quality to the end of their lives. We greatly appreciate your support; we could not have done this without you. So many lives have been touched over the last 10 years, and special memories created for the loving family members of our wish recipients to cherish for years to come.

On behalf of the Staff and the entire Board of Directors of Fairygodmother Foundation, thank you for all that you have contributed over the years to help us fulfill our mission. We could not have done it without you.

With deep gratitude,

Gerald Cholewa
Chairman, Board of Directors"

hug to your dh & you!

[seaprincess]

Good evening and thank you so much for the information about the Adult Make a Wish Organizations. It is such a shame that the economy has forced the Fairy Godmother Program to close its doors. It sounds as if they have made many people's wishes come true over the years.

I have been very busy taking care of my DH and am still struggling to get everything done on a weekly basis. We used to pride ourselves on staying on top of things and now I feel like there are not enough hours in the day for one person to fulfill the endless "to do list". I looked in the mirror this morning and realized how "tired" I look. I knew I felt this way on the inside, but it is now starting to show on the outside as well. I am not sure if there is any magic cream to make dark circles go away.:confused3 I only wish I could sleep at night....too many things to worry about!! I know my DH is aware that I am struggling and am frustrated, I just wish we could communicate better. Expressive Aphasia is such an awful condition, I feel as if he is trapped inside his own mind. He tries so hard and I commend him, I just wish I could wave a magic wand and make him better again.

On a more positive note I am making good progress planning our December Disney surprise vacation. I made reservations at the Boardwalk Inn and even took advantage of the DIsney VISA offer for free dining...who would have ever thought you would see "free dining" in December? This will definitely come in handy. I have to give many KUDOS to the Special Needs Department at WDW. They called me an hour after making the ressie and helped me with arranging all necessary items for the room since they did not have a true "accessible" room available. That alone felt like "Pixie Dust" from above! I have been somewhat lucky making dining ressies so I think the rest will eventually fall in place. This trip will obviously be different depending on his stamina. It will be very crowded in the parks so close to Christmas so I did not go crazy booking too many activities. Normally we are in full go mode! I will certainly look into the Guest Services Disability Card. I truly think this will be helpful. I need to look into renting a scooter for my DH and have heard positive things about Walker Mobility Rental. Has anyone had any experience with this company?

I feel very blessed to have found this forum as it is nice to share my thoughts with you. Thanks for caring so much!

With Much Gratitude,

Lisa:flower3:

[Mackey Mouse]

Lisa.....good for you.. you two go and have the best time. We will be going ourselves first week in December......on a chemo holiday, and Tom will do the best he can and we will too....our grown up children are going to....they grew up with WDW and want to be there with their Dad..

[seaprincess]

Dear Mackey Mouse,

I am glad that you all are going to WDW as well. It is a shame that we will miss each other. We originally were going to be on DCL's Western Carribean Cruise at the end of November and staying at WDW for three days afterwards. Unfortunately, Ben will be on chemo again at the beginning of November and because this is such a new experience for us (traveling that is) I felt uncertain about taking him out of the country in case an emergency would arise. My hope is that if he becomes stable enough, the doctor might ok him to travel on a cruise and perhaps we might be able to steal away to the Bahamas with DCL.

I truly hope you all have a Magical vacation and I think it is wonderful that your children will be there to celebrate with the both of you. The holidays :santa: are so magical at WDW that even when someone is not feeling well, the spirit of the season makes you smile.

Have a wonderful day!:hug:

[Elfstar]

I hope you both have wonderful trips, seaprincess and Mackey Mouse. We're going next week, just for a few days because Jim wants to see it one more time. I'm doing my best to see that he has a wonderful trip. We're wishing you love, luck and pixie dust! And saying prayers for us all!

[old lady]

I will.

[BelleBeast]

To Elfster,

I see that your DH is suffering from ALS - My dear friend had this terrible disease and I took care of him, if you need to talk, I am here!

Louise

[karendvc07]

Seaprincess, I am so very sorry to hear about your husband. Mine was diagnosed with colon cancer at the age of 38. He battled this horrible disease for 2 years, but sadly, never recovered. I know what you are going through....I can only tell you to cherish every minute you get to spend with your husband. I hope you are able to make some fantastic memories at WDW.

Since my husband's passing, I've taken our 2 boys on a Disney trip every year. It has become our "tradition" and I tell them that their Dad would be so happy that we are able to have some fun--just the three of us!

I wish you all the best, and pray that God gives you comfort and strength. We are sending you love & hugs from Illinois....:hug:

[seaprincess]

Hi karendvc07,

Thank you for your kind words. I am so sorry to hear of your husband's passing after battling cancer. It just does not seem fair that so many people are suffering from the horrible disease. I only hope that they will some day find a cure for cancer. I guess I kept thinking I was the only one with a husband that is fairly young and going through this ordeal. It is so comforting to share my story on this board and to receive such warm support makes me keep the faith.

I think it is wonderful that you take your boys to WDW every year. I think you are right to tell them how happy their Dad would be as I am certain he is smiling down upon you all as you dedicate your life to raising your boys and taking care of your family. My biggest regret is not having children. I can not imagine what life will be like if something happens to him and I think how wonderful it would have been to have a child (children) to carry on his legacy. I will always cherish our memories and hope that we can continue to spend as much time together as God grants us.

Thank you for taking the time to share your story with me and for your thoughts and prayers. I am finding myself coming to this forum several times daily just for comfort. Right now it is a positive and much needed outlet for my mind to keep it focused.

Have a wonderful evening.:grouphug: :grouphug:

[Mackey Mouse]

Hugs to all here.. those of us battling with our loved one.. remember as a caretaker, you need a break every so often..

My break yesterday was to go shopping with my youngest daughter for her wedding gown....we found it, she was beautiful in it. The wedding is early summer.. and we are praying that DH will be relatively strong for it.

Our trip to WDW in Dec is the shot in the arm he needs.. and if we need to do it again and again, we will.... just taking our time, soaking in the magic, and enjoying the beautiful sunshine.. It is what makes the winter bearable for us in New England, those little breaks.

So SeaPrincess, go and enjoy, laugh, and just take your time and smell those roses.. KarenDVC07.. hugs to you too. so young, way too young to go away from you and your children...have a wonderful trip in his memory..

[nannerbadnanner]

:grouphug: Prayers said for you and your husband.

[seaprincess]

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?:confused3

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!!:grouphug:

Lisa:flower3:

[safetymom]

:grouphug: :grouphug:

You have a wonderful attitude. I will keep you both in my prayers.

[karen l]

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. :grouphug:

[Mackey Mouse]

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...

[ScrapperBelle]

:hug: I am so sorry.:hug: 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.
:grouphug:

[seaprincess]

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!:hug:

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

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!!

Lisa:love:

[kimis]

You are in my prayers. Remember it is one day and sometimes one moment at a time.

[Tinker'n'Fun]

Prayers and :hug:. You are in my thoughts today.

[Jenvenza]

You and your DH are in my thoughts. Good luck tomorrow. :hug:

[JerJan]

Hi Lisa....I just wanted to send HUGS :hug: ! 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.

[seaprincess]

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!!:wizard:

[Tinks1984]

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 :hug:

[CarolynU]

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.

[CarolAnnC]

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..

[seaprincess]

Hello everyone,

I wanted to start off by wishing everyone a Happy Thanksgiving. It has been a few weeks since I posted because my DH finished his second round of chemo and he has been tired and sleeping a lot. He amazes me how well he tolerates all that he goes through and rarely complains except when he gets cold thanks to the blood thinners. I know that I should be so thankful for him being here, however due to his prognosis I am also very sad inside wondering is this our last Thanksgiving? I try not to think this way but it's hard when you see so many families/couples together and you realize how much you take "normalcy" for granted. Although what I say may sound depressing I am planning on making each moment with him count!!

As if this was not enough, my dear father has traveled overseas to Mumbai to attend a family wedding. When I was at work yesterday I read the news about the terrorist attacks in Mumbai and was panic-stricken for his safety. Because of the time difference, I had to wait until 9:00pm to make a phone call and imagine the relief I felt when I heard his voice after what seemed like hours. Sadly the situation in Mumbai is still not under control and they are confined to their home as they wait. I pray so much for my families safety and the only solace I have is that my family is all together in one home and can support each other. Right now I pray that they can contain the situation and help those in need. My father is not scheduled to fly home until the first weekend in December, all I want is for him to come home safely:hug: . Life is so full of trials and tribulations but gosh, why all in a span of three months??

Thanks to everyone for their continued support.:grouphug: Hope you all have a wonderful holiday.

Sincerely,
Lisa:flower3:

[Kelly B Disney]

hey Lisa. I have been reading your posts and am amazed by your strength. I have been glued to the T.V. regarding the terrorist attack in India and can't believe you have to deal with that stress as well. I am praying for you , your hubby and your Dad. I too will be in Disney in December 18-20. A short trip and then down to Ft. Myers for my son's high school basketball tournament. We are dealing with my brother in law with cancer that started as oral and now is everywhere...I was with him yesterday and he was told by Sloan -Kettering in NYC to go home there is nothng else...He chose to keep fighting and is still taking the weekly chemo to try ...48 years old three kids.... I have been thinking alot about my faith and I really do beleive and you should try to as well if you can...that God does not give us more than we can handle. God Bless you , your hubby and Dad. When will you be in Disney?? Where are you staying??

[seaprincess]

Hi Kelly B Disney, thank you so much for your kind thoughts and prayers for my husband and father. These last four months have been the hardest months I have ever had to endure. I try to keep the faith and strength, but sometimes falter. I know I have so much to be thankful for but sometimes can't help but to think of the what if's. Life is so unpredictable and I guess I am too much of a realist at times.

I am so sorry to hear about your brother in law. I hope and pray that chemo will continue to work for him. It is a shame that physicians just send people away with no hope. I think that sometimes the human element of medicine is lost and there is no regard for the patient's spirit with a terminal illness. We do not have children and can only imagine what it must be like for his dear wife. Please give my best to both of them and tell them to keep the faith. I keep telling myself that God performs miracles everyday.

I know people may think we are crazy but we are trying to live everyday as we always have. We made the commitment to live, "day by day". Sure deep down my DH is scared, however he says he has too many good things to live for. I feed off his amazing strength. I celebrated a beautiful Thanksgiving with him and my birthday was the day after. The best gift U could have ever received was having him home with me. I will forever be grateful to God for giving me this chance.

I can not wait to take Ben to Disney next month. He will have finished his third round of chemo two weeks prior to us leaving. We will be there from 12/14-12/21 and are splitting our stay at the Boardwalk Inn and the Animal Kingdom Lodge. Where are you staying? Perhaps we might be staying at the same resort?

I hope that you and your family had a wonderful Thanksgiving holiday. This board means so much to me and your words mean a lot. God Bless you.

Lisa:hug:

[torismom]

Lisa,

I just read this entire thread. My prayers are with you and BEN!!!! Please enjoy your vacation and living each day to their fullest. I hope my story will give you more hope.Hope is there and Miracles do happen!!

My father has/had brain cancer. 6 years ago he had a seizure and was diagnosed with a stage 4 astrocytoma(sp?) in his left frotnal lobe. I was with him in the hospital when we was diagnosed.The tumor was inoperable(sp?) He went through radiation treatments followed by chemo.He lost his hair and it never came back but it does not matter.
His health really started to take a turn for the worst and his oncologist gave him 90 days to live. This was devastating. My father was 55.They gave him a choice to operate or not. He was told you will die from the cancer or you could die from the surgery. He elected to operate on the inoperable tumor. The surgery was a success, he has some tumor left and it has not grown. He has a lot of trouble with scar tissue though. Yes, he has changed alot ,his appearance, he has problems with his limbs,memory and attitude at times because of the location but it is a miracle he is with us today!!In some ways he is a better man than he was before and in other ways you can tell by looking at him how hard this has been for him.If I can figure out how to add a photo to my post I will.Every time he has a new scan the doctors proclaim a miracle and admit they do not know why he is still with us.My father put his life in the hands of the lord and prayer.

He has gone with us to WDW and drove his scotter and cried being with his grandchildren, went with us on a DCL vacation 2 years ago. He has flown to see me at least once a year and I go home to see him. My stepmother drove him here for a weekend to see my son play football.They take small weekend trips. (My stepmother still works full time)These give my father something to live for and to look forward to.

You and Ben have a lot to look forward to!! My prayers will be with you. This was a hard story to type and I hope it comes across the way it should.

Please update this thread when you have time.

[seaprincess]

Dear Torismom,

Thank you so much for sharing your story with me. It gives me so much hope and I keep praying for miracles each and everyday. It is so difficult to write this story and with all the twists and turns it helps to put your feelings on paper. Your father is a true inspiration and I pray that he continues to improve and enjoy life. I totally understand about the changes you speak of with you Dad. Ben's physical appearance has changed, hair and weight loss, his personality is sweet as ever, I only wish he did not suffer with expressive aphasia so we could communicate the way we used to. We have found new ways to find his words and it makes me love him even more. It is really been a transition but we are adapting well.:hug:

My DH and I are celebrating our 13 year wedding anniversary today:lovestruc !! I feel so thankful for sharing yet another year with my soulmate. We spent most of the day in the hospital and when we finally escaped we dined at our favorite steakhouse. I know I have so much to be thankful for but as I sat there I thought, please God let us be here again together next year.

Ben will be starting this next 28 day cycle of chemotherapy this evening. I am so hopeful as his physicians told us today that they will do another MRI on December 30th. They are hoping for some shrinkage and so am I. In the meantime, I am going to give Ben one incredible vacation. I am trying so hard to get things organized for our trip on December 13th. I am praying for pixie dust of good health for Ben and I on our vacation.

I will continue to update as soon as I receive more news. Thank you so much for your thoughts and prayers. Please have a wonderful evening!!:grouphug:

Lisa:flower3:

[seaprincess]

Dear Torismom,

Thank you so much for sharing your story with me. It gives me so much hope and I keep praying for miracles each and everyday. It is so difficult to write this story and with all the twists and turns it helps to put your feelings on paper. Your father is a true inspiration and I pray that he continues to improve and enjoy life. I totally understand about the changes you speak of with you Dad. Ben's physical appearance has changed, hair and weight loss, his personality is sweet as ever, I only wish he did not suffer with expressive aphasia so we could communicate the way we used to. We have found new ways to find his words and it makes me love him even more. It is really been a transition but we are adapting well.:hug:

My DH and I are celebrating our 13 year wedding anniversary today:lovestruc !! I feel so thankful for sharing yet another year with my soulmate. We spent most of the day in the hospital and when we finally escaped we dined at our favorite steakhouse. I know I have so much to be thankful for but as I sat there I thought, please God let us be here again together next year.

Ben will be starting this next 28 day cycle of chemotherapy this evening. I am so hopeful as his physicians told us today that they will do another MRI on December 30th. They are hoping for some shrinkage and so am I. In the meantime, I am going to give Ben one incredible vacation. I am trying so hard to get things organized for our trip on December 13th. I am praying for pixie dust of good health for Ben and I on our vacation.

I will continue to update as soon as I receive more news. Thank you so much for your thoughts and prayers. Please have a wonderful evening!!:grouphug:

Lisa:flower3:

[happymommy]

Dear Lisa,

I just wanted to let you know that my thoughts are with you and your husband. I hope that these days you are both doing as well as you can.

We'll also be down at Disney the 17th to the 22nd. We were going to stay at AKL, but am switching to the BWI. I love the festive feel there in the evenings, just people watching and the entertainers. I hope you can both enjoy that as well! I hope he's feeling well enough to enjoy some good food and the atmosphere.

I think it's great for you to plan this for him. Did you decide to fly? I bet the airlines will do their best to keep him comfortable on the flights.

My sister is a quadrapalegic, and completely a total care case. She's been like that for almost 40 years, since she was 9, and my mom has flown with her several times. They really help with transporting her and keeping her comfortable on planes (she's getting on in age, so for her she probably won't fly anymore) but I just wanted to let you know, if you do fly, I hope they are very helpful for you.

Hope you have a wonderful, peaceful holiday, filled with laughter instead of worries.

Amy:hug:

[zalansky]

Lisa - I just read the thread and wanted to offer up my prayers to you and Ben also...you're at WDW now and hopefully having a fantastic vacation! I hope your travels went smoothly as well. My heart really goes out to you and your husband. I cannot imagine what it must be like to walk in your shoes. I have lost both of my parents to cancer but not my spouse, and I was not the caregiver. You are a very strong and positive person and I really admire your spirit. Please fill us in on your vacation details when you return.

Torismom - what an inspiration your Dad is as well. And such wonderful news he has beat the odds. Do post a picture of him if you ever get the chance.

Happy Holidays to everyone, especially anyone who has been touched by this awful disease.

[Mickee]

Just found this forum.

My prayers are with you Seaprincess, as well as your husband and family.

My wife was diagnosed with a brain tumor on 10/24/08, Biposy was done on Dec 2nd and we have no word yet.
We were supposed to meet with the surgeon last Thursday but it had to be sent out to the Mayo for further testing.
She turned 42 on Dec 2nd.
We're hoping and praying that this will be her best birthday present ever.

In the intrerim, I threw a "diversion" trip to WDW on top of everything else. Trying to keep the childrens minds elsewhere, hoping Pixie dust and magic will happen, we had no intentions of going for another year or so.....

One day at a time!

[frdeb1999]

My continued thoughts and prayers to you and your family. And hope that you had a wonderful and much deserved time in WDW.

[frdeb1999]

Mickee...also hope things work out for you and your wife. I know how hard it is to wait. You and your family will be in my thoughts and prayers also.

[nana2tots]

I pray each day for you , and hope things will get better. I know excatly what you are going through. God Bless !

[isyt]

Lisa.....good for you.. you two go and have the best time. We will be going ourselves first week in December......on a chemo holiday, and Tom will do the best he can and we will too....our grown up children are going to....they grew up with WDW and want to be there with their Dad..

I was diagnosed with the same cancer in october I jufinished chemo and radiation in January and booked a Disney trip , we just got back and had a great time!!!!!You should go!!!
The tumor is on the right side of my brain so I lost use of my left side.I go back next week for a new mri, wish me luck!!!!by the way I am39 also

Good luck to you and your husband!!!!

[luvmarypoppins]

I was diagnosed with the same cancer in october I jufinished chemo and radiation in January and booked a Disney trip , we just got back and had a great time!!!!!You should go!!!
The tumor is on the right side of my brain so I lost use of my left side.I go back next week for a new mri, wish me luck!!!!by the way I am39 also

Good luck to you and your husband!!!!

Blessings to you isyt. Sending lots of thoughts and good wishes and prayers for your MRI.

[seaprincess]

I am sorry it has been a while since my last update; life has been difficult. My DH and I have been through many challanges over the past several months and each time, he fights back and amazes me. The last time I wrote about him we were on our way to Walt Disney World in December and had an amazing vacation of a lifetime. I can only say that I know understand why they call Disney the most Magical Place on Earth. We truly had the equivalent of a "Make A Wish" trip for adults, courtesy of some of the most amazing Cast Members I have ever met. We will cherish that memory forever.

2009 has not been so kind to my husband. His battle with brain cancer has been so stressful. His MRI in February showed the tumor had not only grown but has now scattered additional tumors to the Occipital Lobe. He was on Temedor, oral chemo, until Febraury and his Oncologists changed their treatment to a combination of Avastin and CPT-11, chemo-infusion that would seem to have more promising results. With great expectations, my husband endured three treatments over a month's time. We were so hopeful for good news that the tumor(s) would either shrink or at least stay the same. This past Monday my husband had his MRI. We were to learn of the results on Tuesday and nothing could have prepared me for the answer we received. Not only did the chemo not work, the new tumor in the Occipital lobe grew from 1x1cm to 2x2.3cm. So even with the best of conditions, the tumor was resistent. Further, we were now told that they had no more protocols that would benefit my DH's tumor so "quality of life" with Hospice was introduced or the option to go back to DUKE to see if any additional protocols will benefit him and to get a second opinion.

We were so devistated. I guess I always thought we would not be out of options. Because Ben is young and healthy, we all decided that we were not ready to give up and made an appointment at Duke. I told myself I was not going to be too excited because I did not want to get my hopes up. After the appointment, I don't think I have ever cried so much. I only pray to God he will not suffer. We went to bed on Thursday so indifferent and confused.

Friday morning promised to be a better day as I was off for the Easter holiday. What started out as a good morning changed in minutes. My DH woke up and in an instant, I knew something was terribly wrong. He cupped his hand over his left eye and complained of a terrible headache, a 7 out of 10, he said. Within minutes, his speech became garbled and I called the hospital. This was the first Neurological set-back we have encountered since he became ill in July. Being that it's Easter both Doctors are on vacation. I was told by the Oncologist on call to bring him to the ER immediately. I don't think I have ever gotten ready so quickly as we were out the door within 10 minutes. What normally takes 15 minutes to drive felt like an eternity and I kept asking Ben if he was ok. He kept holding his head in pain. We were immediately taken back to a room and they gathered information from me and got a Cat-Scan of Ben's brain. The results were back so quickly and the Neurologists confirmed that he bled into the new tumor in the back of the brain. Although contained within the tumor, the swelling began, blood pressure increased and he was unable to make sense of anything. We were told that the Coumadin he was taking over the last six months caused the bleed and a plasma tranfusion was necessary to reverse the effects of the blood thinner. The trasfusion was successful and after two days, the bleeding has seemed to stop along with the help of steriods for adema around the tumor. Today he seemed more like himself, but I can not help to think what will happen the next time especially with this tumor growing so quickly. Although I should be happy they may discharge his tomorrow, I am so scared to bring him home for fear of what may happen next. We have the standing appointment with Duke, but if they can not help, we are left with Hospice as our only choice.

I am so saddened by all of this. For the first time, I feel life is getting the best of my DH and myself. We have been on an 8 month journey that seems so long but yet so short. Sadly, statistics seem to dictate the lifespan of gliobastoma patients as they generally give them between 6 months to 1.5 years. I was so hoping my DH would not be a "statistic". I have always heard that patients with a terminal illness come to grips with their illness. On Thursday we ironically had "the talk" that no one ever wants to have about life, his final wishes etc. It was truly the most difficult conversation we have ever had. At the end of the talk, he told me that he was at peace with himself and life and has lived forty wonderful years. I admire him so very much, but it is so painful at the same time.

No one ever wants to lose their spouse, yes we have truly had a gift of 8 beautiful months to spend together when I was not sure if he would initially recover from his surgery in July. He has fought so hard, never complained and is greatful for everything in his life. I only wish I was as strong. Although he is here with me now, I feel so alone in some way and it makes me sad.

Please, if you have a moment, we could surely use some prayers. I am not sure what is in store for my DH but I pray that God will take care of him. He is so gentle and kind, it is such a shame that a disease can be this cruel. I will definitely keep this post updated after our consultation with Duke.

God Bless you all and thank you for letting me share my story~it helps to get it out of my head and to share with others. :grouphug: ~Lisa

[bbyee]

Lisa, I just found this thread and wanted to send you vibes of strength and peace. If you do choose to look into Hospice, I think you'll be pleasantly suprised at how many of the medical professionals who work in that speciality are so kind and dedicated.

I am very happy for you both that you chose to take a wonderful vacation at WDW and so glad that the staff helped it be that way.

[frdeb1999]

Lisa, You and your family will be in my continued thoughts and prayers. So glad that you were able to get your vacation in Dec though. :hug:

[ameraumi]

More prayers are coming your way! :hug:

[nana2tots]

I just cry when i hear your story, It is so hard knowing you are going to lose your Loved ones, and there's not a thing we can do. My Dear Sandi was on the same Meds, plus all of the Herbs, and they just didn't work.
I can remember, while i was driving Sandi to one of her appts in July, and she looked at me and said, Mom, let me go ! I was so stunned, that i didn't know what to say, except you can't give up, me being selfish, and not really realizing the terrible pain she was going through, I, as her Mom just wanted her to live. 3 months later , she passed away.
It is so hard to watch what those awful Brain Tumors do, it is Hell. My Dear Sandi was so full of life up to the end of June, her 3rd surgery, I wish to God now that she hadn't had that 3rd surgery, and it is possible she may have lived a little longer, but then again, i 'm being selfish, not enduring her feelings and pain, just wanting and hoping that a Miracle would happen.
I , have tried to be a Good Christian, but still question God as why he let her get such a terrible thing in the first place, there are so many evil people out there, why not them, why her ? My husband is really have a hard time w/ the God issue, he refuses to go back to church .
I Pray for your Dear Husband, and you, to get through this ordeal, and if you ever need to talk i'm here, even though i'm still having a hard time. I did get up and go to the Sunrise Services at the cementary yesterday, and it was hard.
God Bless you guys !!!1
Nana:grouphug:

[tigger813]

God Bless you! Our prayers are with you and your DH.

[Regina]

Words are so difficult to find for someone who is dealing with a situation where little hope is offered. Please know that I'll be praying for you. :hug:

[zalansky]

So sorry to see the update. Our prayers continue to be with you and your family at this difficult time. I am so sorry Lisa.

[luvmarypoppins]

Lisa - continued prayers for you and Ben. :hug:

May the Lord bless you and send you his peace and comfort during this time.

I had some of the talk too with my dh, he didnt want to hear me but I made him listen. We both didnt stop crying, but I told him it was something that needed to be done, now or later etc.

My heart goes out to the both of you. Cancer is so tough.

I am also so happy you got to enjoy disney in december, we were there then too, the next day we came home I found out I had cancer. So memories are so precious for sure.

[karen l]

Lisa, I just read your update & I'm so very sorry. I'll continue to keep you & Ben in my prayers. I know how devastating it is to watch your DH suffer through cancer. Wishing you both all the best. God bless.:grouphug:

[Mackey Mouse]

Thinking of you all as you battle this dread disease.. I try never to go into the what if's with my husband, I take his battle, he does too, one day at a time as what choices are there? To Sandi's Mom and Dad, I wish peace and love, I am sorry that all of have to go through this..

[soonerlpn]

I am so sorry that you and your husband have to experience this. I truly wish the best for both of you. I am a hospice nurse so if you have any questions feel free to ask here or send me a PM. My thoughts are with you both.

[seaprincess]

Thanks to everyone for their kind words and continued support. For the first time in my life I am emotionally numb. I have cried so much that my tear ducts are dry, if that's possible.

Since Friday's incident, I have noticed even more changes in my husband, he seems slower cognitive and physically. He told me at dinner tonight that he is so tired after a four day stay at the hospital. My father in law took him to Duke today and they have decided to try another oral form of chemotherapy. Unfortunately, my FIL was not very forthcoming with details, so I put a call into the doctor's office tonight and I hope they can enlighten me as to what the protocol is about. I am trying to remain cautiously optimistic but it's hard.

There was a lady who came into my office today who knows of my husbands condition and talked to me about an herbal drink called Mangosteen. It is supposed to be helpful for many conditions including tumor shrinkage for cancer. Of course many products make this claim, has anyone heard of this product? There are so many on the market and I always worry about side effects and drug interactions. She left me several samples. I am curious but don't know whether to trust it.

Again thank you all so much for listening. This battle is tough but my DH is a fighter and I will honor his wishes until he says otherwise. I will keep you all updated as to his progress.

God Bless You All~ Lisa and Ben:grouphug:

[mrs_hower726]

I just want you and Ben to know that my thoughts are with you.

:hug:

[jewelsangel]

Dear Lisa,

:sad1: I am so sorry and saddened by your story. I pray that the dark places in your life will be filled with God's light, and that He will bring you both peace and strength for the days and challenges ahead. I pray that His will be done in your lives and that He gives you strength to accept it. I pray that all of your needs are met today and always.

[Kathy C]

Dear Lisa,

Although I read this forum often, I've never posted. I do, however, say a prayer for all.

I just wanted you to know that I'm praying that God give you and your husband the strength you need to get through this difficult time.

I lost my mom to breast cancer three years ago and hospice was wonderful. The support they offer is like no other for all family members. If your husband is open to the idea of hospice, please consider having them come now. It doesn't mean he's giving up, it's just another layer of support and they truly are wonderful.

Hugs and prayers to all of you.
Kathy

[Mskanga]

We just lost my daughter's friend to Glioblastoma as well a week ago yesterday. She turned 16 april 2nd and that was the day she slipped into a coma , she fought hard for 15 months.
I hate cancer and what it does to people.
My prayers are with you .

[Tinker'n'Fun]

My prayers are with you and I am going to walk to church tomorrow and say an extra prayer. Diane.

[seaprincess]

Good Morning,

I just wanted to say thank you for your prayers and continued support. My DH has started a new chemo regimen; a combination of two drugs-Etoposide and Cytoxan. Thus far he has not had any side effects but I never get to excited as the side effects start appearing after a week. Of course he is tired, but has a positive attitude. He has to see his Oncologist today to get blood work done so I always hold my breath on Thursday's. I keep praying he will continue to sustain.

Mskanga, I am so sorry to hear of your daughter's friend passing away. She was so young and such a tragedy.

Please take care and I will update soon.

Lisa

[Regina]

Continued prayers that this new treatment brings positive results. :grouphug:

[luvmarypoppins]

:hug:Lisa, continud prayers for you and Ben.

[kkbeaton2]

My prayers are with you and your husband. My daughter had a brain tumor at the age of 6, and it still tears me up to read things like this, and she is now 13. It is such a hard thing to deal with, so we will keep you in our prayers.

[cjlvsccm]

There was a lady who came into my office today who knows of my husbands condition and talked to me about an herbal drink called Mangosteen. It is supposed to be helpful for many conditions including tumor shrinkage for cancer. Of course many products make this claim, has anyone heard of this product? There are so many on the market and I always worry about side effects and drug interactions. She left me several samples. I am curious but don't know whether to trust it.

Again thank you all so much for listening. This battle is tough but my DH is a fighter and I will honor his wishes until he says otherwise. I will keep you all updated as to his progress.

God Bless You All~ Lisa and Ben:grouphug:

Lisa,
Prayers are with you and Ben, and all here on these boards facing cancer in our lives and our loved ones. :hug: Even for those of us who are Easter People, it's still a painful and scary thing to face.

I have read about mangosteen, a fruit and its juice, which has lots of different antioxidant properties. Some people can get benefits, and some who use it might never.

My sister (with stage 4 oligodendroglioma type of brain tumor) is taking "turkey tail mushroom" capsules, which my dad believes are helping. After her latest surgery in Jan.'09 with chemo wafer implant, she had lots of neuro deficits. The time is past for her chemo to have dissolved, and she is now improving in her mental and physical capacity and pretty stable. The docs said there is no other chemo to try with her, and probably won't try operating again. If needed they will try Avastin alone (which is not usually very successful w/o chemo), but so far they don't think she needs it.

I can't recommend for anyone's specific situation, but some things that offer hope may be worth trying. Do some online research for alternatives... keep in mind there are lots of scams, but if you have an open mind you may find something that might help.


If our local thunderstorms clear up for tonight, I'll be walking in our American Cancer Society's Relay For Life. Team CureQuest is raising research funds to hopefully benefit my sister, and all of you here!! :grouphug:

[seaprincess]

Update....well I am not sure if I can handle any more bad news. The last two weeks have been so challanging. We went to Duke and started a new protocol of Etoposide and Cytoxan. Ben did splendidly for almost two weeks. I got a phone call last Friday from my DH complaning of nausea and diarrhea. I rushed home and gave him his Zofran for nausea and Immodium for diarrhea. I hoped it would resolve itself. Instead his condition progressively worsened each day to uncontrollable diarrehea and he was admitted to the hospital on Wednesday night. After being up for 30 hours straight, I collapsed in my bed, but too tired to sleep, if that makes any sense, and thought about what to do. After two days in the hospital and massive amounts of fluid, I am told he will be in the hospital until next week. Now we are faced with a decision as to what to do because this protocol will not work with his body. I am starting to wonder, what do we do now?

If you get a chance please say some prayers, we can use all the prayers we can get.

God Bless you all!!

Lisa:grouphug:

[luvmarypoppins]

:hug: Contiued prayers for Ben and you Lisa. May God be your strength and comfort.

[Mskanga]

Lisa , I so hate that you have to go through this.....it's the worst thing ever to see a loved one going through something like this.

I hate cancer more than I will never be able to say......

major hugs and hang in there ....I know about the exhaustion very well , being completely drained and not being able to sleep....I spent many nights like that with my daughter.

[aTasteOfHeaven]

I am so sorry to hear what you are going through! It is such a hard thing to go through with your loved ones. My daughter was diagnosed last year at 18 months with a stage 3 Wilm's tumor. I don't know any words of comfort other than I will keep you and your family in my prayers.



(my daughter is currently in remission.)

[kathleena]

Hello

I just wanted to post my thoughts for you and let you know you are in my prayers.

My Mom had a GBM, it was huge by the time they found it. Sounds like in the same spot as your DH's. She also was left with some aphasia after the surgery and we came to think of her overall effect as being like a lobotomy. And then my cousin had one, but it was dx as an oglio at first, then they found GBM behind it. All cancers are awful, and I think brain cancer gives you a double whammy because of how it changes the personality and all of the cognitive functions, aside from all of the illness because of the treatment.

So having been there twice, I have a huge amount of empathy for you and your family. I hope you are taking care of yourself and finding peace in all the times you can.

:hug:

[nana2tots]

I am so sorry that you and Ben are going through this, it is a Monster, and we all hate monsters. If you need to talk, i am available, as you know i lost my Dear Sandi w/ this monster.
What part of NC are you in ?

[luvmarypoppins]

Thinking of Lisa and Ben and wondering if anyone has heard from Lisa? They are in my thoughts and prayers.

[nana2tots]

You know, I was Thinking the same thing, I haven't been on here since we left and come back from Disney, I haven't even posted any of the trip, Guess you know by now that it wasn't as Happy a trip as I had wished. Maybe one day, I'll post. One thing i told my Hubby, he want have to worry about me ever whinning to go back, and you know how a Disney Freak i am, or was.
Anyway, if anyone hears from Lisa, plz post.

[zalansky]

More thoughts going out to Lisa :grouphug:

[nana2tots]

Lisa and Ben, Prayers for u guys, I know what u are going thru, I have been awake most of the nite w/ Sandi on my mind, everything just seems to be going thru my head, I just don't know how much more my Heart can take. Please, if you need anything, plz let me know, You can cry on my shoulder, and i will cry on yours, Hope some of this Chemo will work for him. Take care and God Bless you all.

[minniebeth]

Lisa, seaprincess, you are in my thoughts and prayers as I have been following your thread too. :grouphug:

[seaprincess]

Hello Everyone,

I am sorry I have not posted in quite some time. I happened to check the boards tonight and see that several of you had sent some recent thoughts. Thank you so much for your continued prayers and support. The past three months have been a series of ups and downs and sadly things have recently taken a turn for the worse.

In May, we made a decision to go with Hospice to give my DH the best quality of life he could have. After being hospitalized in May, I was not sure if Ben was going to make it home. By a miracle of God, he recovered and enjoyed two months of "normalcy" (without chemo for the first time since July '08). We were able to take him to the beach in June and to Walt Disney World in July.

The weekend we were at WDW things began to change dramatically. Ben was barely able to walk, talk and required a wheelchair, he became weak on the right side and began having bowel and bladder issues. I am so greatful that we were able to make it back to NC without any incidents. I placed a call to his Oncologist and he decided to do an MRI to see what was going on. We first went in for an MRI of the brain. The next morning, my fears were confirmed. More tumors in the brain along with 30% growth of the tumor in the Occipital Lobe. Also, that they saw a spot in his spine on the MRI and asked that we rush in to have a spinal MRI done. We took Ben back in the morning for his spinal MRI. Our Oncologist was gracious enough to call us on the weekend. Sadly, he told us that he now has two more tumors in his spine. One at the base of the neck near the thalamus and the other mid-way down the back which is probably causing the bladder/bowel issues. We sought consult with Oncology/Radiolgy on Monday. They told us there was no hope of radiation for the tumors. It seems like it is just getting worse. The Radiolgist suggested we try a low dose of temodar to see if it might improve his symptoms. After talking it over with his Oncologist, we decided to give it a try. We were told the success rate would be 10-20%, but we knew we had nothing left to lose. Ben started the chemo on August 1. Today is August 12th and I am sad to say they decided to discontinue the chemo as it is not effective and Ben's health is steadily declining.

It has been a horrible week for me. I am now told Ben has between 30-60 days to live. In the interim, his needs are getting greater than we can handle at home. In the last two days he has developed uncontrollable hiccups. A result of the tumor I am told. We have been given Hyperidol however it works for a short time and causes drowsiness. He is lucid at times and not others. His personality has changed with the tumor progression. I keep hearing from everyone, "brain tumors are unpredictable", no kidding! We are in the process of looking for a Hospice Home for care and let me tell you the process is a nightmare. Right now, he is not "sick" enough, meaning, close enough to death, for them to take him as an acute patient. I am told he would be considered a "residential case". What this means in the terms of insurance is a nightmare. I was initially told that oh yes, you have met your deductables and we will cover 100%. Then when the Social Worker reaches out to the Hospice Homes, he doesn't meet the criteria of being "sick enough"//or the 30 days or less until death. It is exhausting. I am so mentally tired and watching someone you love struggle so much is the most difficult thing I have ever had to do. This experience has made me realize how much are health care system needs reform. How much patients and caregivers go through and how life can change everything in an instant.

We have been so lucky to have had a year and several weeks. Selfishly, I want more time with my husband. I think it's normal to feel this way, who plans at 40 to lose your life partner/best friend? I have tried to prepare myself for what is coming next but it is so difficult. I am scared to be alone. I have tried to face my fears at every pass, but alas I am feeling so sad and empty.

If you have a chance to say a prayer for Ben, please do. All I want for him is to be comfortable and pain free. He has fought so hard, never complained and has asked for so little. I just hope that God will show him some mercy.

Thank you for listening to my story. God Bless.:grouphug:

[Puccaw]

PLease know that I will keep in you in my thoughts and prayers

[karen l]

Lisa, I'm so sorry that you & Ben have to go through this ordeal. I lost my DH
to cancer when I was 44 & understand your feelings. Please know you're both in my thoughts and prayers. Wishing you peace - God Bless. Karen

[CarolAnnC]

I will pray for your husband, and also for you. I am so sorry for the suffering you are both going through. It makes one question sometimes how God allows these things to happen. But, I can only hope and pray there is a better place where we will find peace and relief from pain and suffering. Hugs to you,, and come visit here whenever you feel the need for comfort and sharing...

[zalansky]

In many ways I know what you are going through. I lost both of my parents to cancer and we had home hospice for both of them. Do know that once they come in, they are angels. I hope that mess gets sorted out ASAP. I agree this country needs health care reform. No one should have to suffer as you both are right now.

Reading your post has tears in my eyes. I too, am 40 years old and your posta again reminds me how precious life is, how everything can change in an instant - how we need to live for the here and now.

My deepest prayers will be with you, your children and Ben in the coming weeks. I know it isn't much, but I am so very sorry this is happening to you and your family. God bless you.

[JerJan]

GOD SPEED Ben and God Bless you Lisa. Your post brought tears to my eyes, it has been 13 months today that I lost my husband to colon cancer (he was 49) so I do know how you are feeling. I wish I could take it all away for you (where's that damn wand :wizard: when you need it!?) Some days it seems like yesterday that he passed and some days it seems like an eternity.... I will keep you in my prayers. :hug: I just take comfort in knowing that there is a "BETTER PLACE" (that is filled with our loved ones) than the one that we are in now and GOD must need these SPECIAL people with him for some reason that we are not aware of....someday hopefully we will get the answer.

[antmaril]

My heart is breaking for both of you. I lost my husband (55) to pancreatic cancer last year. Reading your latest post gave me flashbacks to my husband's struggle and what I went through during that time.

Please know that I will keep you and your dear husband in my thoughts and prayers.:hug:

[Mackey Mouse]

Lisa.. it is so difficult to be in the midst of this battle with our loved ones.. Please know that I am thinking of you and will offer prayers for you both..

Not to change the tone of my post, but this week I wrote a letter to both senators of my state to talk about healthcare reform. It was when the insurance company refused to cover a drug for my husband, and I was wild. I wrote to the local newspaper too asking if they would like to do an article about healthcare and how it affects the patients who are fighting terminal cancer.. Anyway, I felt I had to say something to someone as I am that concerned..

It upsets me that they will not take him into the hospice setting.. Can you appeal the decision? Also, have you ever thought of being part of a caregivers' group... I am and it is my lifeline to information, new treatments etc. etc. We know when there is nothing else left to do, but you would benefit from the comfort that others will give you who have been in your place..

Please pm if you would like information on this...

Take care of yourself, it is important that you stay healthy..
Marsha

[luvmarypoppins]

:hug: Lisa, I am sending you my thoughts and prayers. That is why I actually went and found the thread and asked if anyone had heard from you. God just put it on my heart to pray for you and Ben. I can't imagine what you are going through. I know my dh felt so helpless too when I was so sick etc. You are a wonderful caregiver and Ben is so blessed to have you. I pray for Gods oeace,comfort and strength for you and Ben in the days ahead. Blessings to you both.

[parrotheadlois]

I am so sorry for all you're going through, I wish you and your husband peace.:hug:

[Jcricket Fan]

Know my heartfelt prayers continue for your dear Ben and for you Lisa. It is not selfish to want those we love to stay with us unfortunatly it's just not possible.

Peace be with you.
Colleen

[MaryJPixie]

I just stumbled upon this thread.....my thoughts and prayers are with you. God Bless You both:hug:

[dogodisney]

:hug: May God Bless both of you. Prayers said.

[kathleena]

Just been thinking of you. Sending prayers for your family.

[Nicholfamily5]

You and your DH are in my prayers. I hope you are able to have some bright spots every day to share in the time you have with each other.

[seaprincess]

Hello Everyone,

My dear husband has taken a devistating turn. He is fighting for his life on a ventilator while fighting uroseptic shock from a blood infection. Sadly, they always say it is not the cancer that is their demise but an infection. We have fought so hard to keep him safe, sterile etc. but the catheter seemed to has spread the infection. They are observing him for the next 24-48 hours and if nothing improves we will have to make the decision to turn off life support.

If you have a moment, please say a prayer for him. We have been with Hospice since May and yesterday I watched my husband struggle for air and a heartbeat that was up to 155 beats per minute. Although we had a DNR in place, we decided to revoke it to treat the infection. Perhaps not everyone will agree with my choice but he has fought so hard and sadly we had never had this conversation of "what if". I went on my gut and how well I know my husband's wishes. It is so tragic for him at 40. I am trying so hard to hold it together.

Please make sure you have this discussion with your loved ones and be prepared. Life changes in an instant~live life to the fullest and enjoy every moment.

Lisa

:littleangel: (we need all the angels we can get):littleangel::littleangel::littleangel::little angel:

[dee47]

You are in my heart and thoughts tonight. I don't believe there are wrong choices in this situation. You've made the one that brought you peace and that makes it the absolutely right choice for you. I hope you'll find peace and strength in the days to come. I will keep you both in my prayers.:hug:

[MariDisney]

Praying for your husband's situation and that the doctor's will know the perfect thing to do.

[Darsa]

My thoughts and prayers are with you and your husband :hug: :hug:

[luvmarypoppins]

:hug: Lisa, sending prayers for Ben for Gods peace and comfort for you both. Blessings to you always.

[Nicholfamily5]

I am so sorry for this news. I will be praying for you and your husband. We are all with you!

[karen l]

Lisa, my prayers continue for Ben, you & your family. I was in your position with the DNR - you did the right thing & please don't second guess your decision. Your love for your husband will guide you & the choices you have to make. God Bless you & your family. :grouphug:

[kathleena]

Praying for you and your husband for strength and peace. Also for the doctors for wisdom and patience.

You have been a strong woman in the face of caring for your loved one in an end of life journey. It is never easy, it is so very painful. You are doing all the right things and there is no one in his life who could have done it better.

About "right decisions". What is most important is that you made the decision based on what you knew at the time you made it. For that instant, that is what you knew and what you had to do. It doesn't matter what anyone else thinks, you are the one living it, you are the closest friend of your husband, the one he chose to make these kinds of decisions for him and for you. I know this from my heart because my mother passed from a GBM brain tumor and my father and I also made decisions that others may have questioned. It will never be important to look back and second guess, no matter what happens.

:hug:

[sebzmom]

Lisa,

My prayers are with you and Ben. cancer is such a horrible disease that affects everyone. I lost my mom to cancer at 29 (after 3 years of being told she can pass away anyday), my little brother was only 15 (my stepfather divorced her when she got sick), and my son was 11. I took care of my mom through hospice for the whole time and I know devastating this can be for everyone. I just want you to know you are not alone. Sometimes as a caretaker you feel you have all the weight on your shoulders and you don't want to upset, or stress out family, friends, with bad news or how you feel. So if you ever want to vent, talk, please know we are here for you, or you can always PM me :grouphug::grouphug:

[minniebeth]

Lisa, you and Ben are in my thoughts and prayers :hug:

[dogodisney]

I will continue to keep you both in my thoughts and prayers. :hug:
Please keep us updated.