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".

 

[mommasita]

I am so sorry for everything..
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.

 

[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 . 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.

 

[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.

 

[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!

 

[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.

 

[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.

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!