Highlight: I had hair cut 🙂
One evening after an intense discussion with my husband about a trial to treat dipg offered in the other part of the world. It left us nothing but exhaustion. My husband felt skeptical for this trial, which he thought collecting a lot of money or bullying patients, without proven result. Meanwhile, I insisted it’s not a scheme, that trial get some patients better.
“I’m sorry I hurt you”, he said. “Because I don’t know how to deal with this. I have 3 heartbeats: one heart beat told me the scientific knowledge and standard treatment; another heart beat told me hope, for I see you keeping hope high; another heart beat reminded me to hold back, not to hold hope high. I fear and I don’t want to see you disappointed from hoping”.
::: WE’RE FIGHTING THE HOPELESSNESS
I understand my husband’s feelings. I told him that it’s DIPG who hurt us.
“However don’t assume that we, dipg warriors, only hope without understanding the knowledge, the fact and the fear. We read articles about dipg, we experience the symptoms, we know our body is getting better or getting worse, we’re also worry and sometimes fear of what next. But hope is the last thing we have” I said.
We are called warriors, because we’re not only fighting the disease, but more than that, we’re fighting the hopelessness.
We are called warriors, because even though we endure dipg, but we’re still smiling, shining, appreciating what we have still.
Yes, I choose to keep my hope high. It’s not a denial, it’s hope against hope (expectation).
When I read about dipg warriors journey shared on Facebook Page: DIPG Support and Awareness, I keep hoping for them.
A warrior in his 20s, have no more treatment available for him. Nevertheless, I am still hoping for he will get better and miraculous complete healing happen.
A 17 years old warrior, just became a mother. I am hoping for her tumor shrinks and disappear, that she is healthy to watch her baby growing up.
A 26 years old warrior, diagnosed with grade 4 midline glioma, just finished radiation. She said that she was getting better and looking for promising trials. I was glad and praying that she’ll find the best treatment and get healed.
::: POSITIVITY AND HOPE
I know the reality, I know the impossible, I know the limit. When there’s no logical reason to hope, I hope anyway. For myself and for other warriors. Beat the sense of hopelessness.
Last week, a prayer team praying for my left shoulder and arm pain free and my eyes get aligned again.
Well it’s not happening to me at that moment, my eyes yesterday even worsened, turned more inside, my shoulder still hurt, but nevertheless I am still hoping that good things will happen to me with the chemo I am taking now.
“You know, the fact is I see you’re gradually getting better after you’re back home from the hospital. You weren’t able to walk, stand up from toilet seat, sensitive to sunlight. Now, you’re cutting veggies and cooking meals, no more stroller, wheelchair and special bathroom seat (go to the cellar), last week you’re walk alone to the city”, said my husband.
I look back and he’s right! I really appreciate this, how he shares with me what he sees, my improvements. Boost my emotions and positivity.
I also appreciate very much for prayer groups and friends supporting me.
It’s lovely to know you love me and keep hoping the best for me against the hopelessness. I feel encouraged.
I know it’s hard, because to hope is to challenge your fear, your feelings, your believe, your knowledge.
So, thank you so so much for keeping your hope for me.
Currently I am taking Procarbazin until 9 February. I will have MRI on 20 February.
Symptoms are quite stable, only still pain with my left shoulder and arm, and eyes slightly more turned inside.