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.
~Lisa
! 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.
!! 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.
