Shenanigans. I stopped him as he started to pour milk into the bag. Oh, and the bag has cocoa pebbles AND mini wheats in it. 😳 This is what our life looks like 4 years into this GBM journey.
Hi. I’ve just read your blog and I’m impressed. I felt truly inspired by your story, your faith, your strength and your ability to focus on the positive rather than the negative aspects of life.
My name is Ana, and I’m 36 years old. My husband is 30 years old. We are both from Portugal, a smal country next to Spain.
My husband was diagnosed with a GBM last September 2015. Our daugther was just 1 one year old at the time of the diagnosis and we were trying to get pregnant again. We were living our lives to the fullest and we were a very happy couple.
In September 2015, he was at work when he suddenly lost his ability to read fluently and I took him to the ER. Further to an emergency MRI, the doctors told us that he had two malignant brain tumors, one (located in occiptal left side area of the brain) was operable and the other was not (located in language area of the brain). He underwent surgery and the neurosurgeon told me that he was not able to fully remove the operable tumor. He also informed me that my husband had 3-6 months to live.
I felt devasted and heartbroken. However, I never allowed myself to cry in front of my baby nor to let my husband realize how much suffering I was dealing with. I’ve just tried to survive and decided that, as long as my husband was alive, we were going to be a “normal” family, like we used to be.
Further to the surgery, and bearing in mind the life expectancy that my hysband was given, I was expecting that the neurologic deficits that the doctors have talked to me about starting to show up. But, apart from the reading disorder, my husband was just…like he was before the GBM diagnosis: normal, absolutely normal!
After 45 days of radiation and temodal, he started to read fluently again and the MRI showed that the both tumors had shrinked significantly.
After further consideration and lot of research I’ve decided to take him to German to take immunoterapy shots. He continued the chemo treatment in Portugal and at the same time initiated the immunotherapy shots in German.
The last MRI showed no tumors. They’ve gone. However, the doctors found 4 small spots that they believe to be radiotherapy necrosis or an inflammatory process due to the treatments and not tumor regrowth (Thanks God!)
My husband is just fine. He practing for the half marathon. He is working (he is tax consultant). He has no side effects of the chemo. And he shows no sign of disease. He is still the same. No neurological deficit. We are now close to celebrate 9 months from the diagnosis. My husband will finish the last round of chemo next month (he was able to have all the cycles straight away, with a minimum break, as his blood test have been excellent).
It has been a difficult year, though. Having a husband with a terminal cancer, a baby and being a lawyer it’s not always easy. My parents help me a lot but my husband’s parents don’t really care (no support, his father last visit was in October and his mother last visit was in February).
I thank God for the fact that my husband is doing so well and for my precious daughter who is becoming a beautifull little lady (she is so happy and the sound of her laughs is truly an inspiration to me).I struggle to keep positive. I keep thinking that there are long term survivors out there. But I must confess that sometimes I get anxious and that I grieve for all the things that cancer has stolen from our lives (confidence in the future, planning the future without thinking about the disease and fearing death, etc.). I also feel lonely sometimes because no one seems to really understand the pain and the anxiety I am dealing with and all this struggle against GBM.
At the same time, I have a lot of dreams and a lot of things that I still want to accomplish. We would both love to have another baby if he continues to have clean MRI’s and things get back to the normal (as normal as possible after a brain cancer diagnosis). Am I beeing delirous? I know that the cancer will eventually come back. Should we refrain ourselves and be cautious in the way we live ours lives from now on? Or should we take this opportunity to live our lives to the fullest, like we did before cancer? I feel deep in my heart that, despite all the uncertainity about the future, that we should live our lives to fullest because no one really knows when the cancer is coming back and we deserve to be happy to the best we can. I feel that we are too young to let fear dictate our lives. We have the support of my family in case the cancer ever comes back and will fight it again like we have been doing this first time. I do not want to have regrets and spend the rest of my life thinking about the things that I did not allow myself to accomplish because was not able to get rid of the fear and live my life to fullest. We both dream with a new baby (being a parent is a such a blessing), so, let’s just hope that beast does not stand in our way again and that our dream comes true some time soon.
Sorry for my comprehensive comment. Like I said, sometimes I feel really lonely. I with love to hear from another woman whose husband was diagnosed with the same disease. Your blog, your beautifull familly and your stregth is an inspiration for me.
Lots of love
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