Her MRI revealed slightly more new tumor growth than in August, confirming her need to begin a third round of chemotherapy, so she begins oral CCNU (Lomustine) tonight. We spoke at length with Dr Nghiemphu about Susan having a biological agent called XL184, but were put off by its similarity to Avastin with the potential to cause another hemorrhage. We might have decided otherwise if the new tumor tissue were faster-growing and had lots of blood vessels in it, but we think CCNU will handle the need at this time. XL184 sounds promising for high-grade tumors since it cuts off blood flow like Avastin, plus it inhibits certain chemical receptors involved with the cancer. I deeply respect Dr Nghiemphu's approach in making recommendations like these. She informs and explains, and outlines potential benefits and risks - but since an outcome is so uncertain, she stops well short of dictating a treatment. Instead, she invites us into the push/pull of a complicated decision until we arrive there together. The quality of her care is so good – and gives us confidence and peace of mind in the process.
Our dermatology and infectious disease excursions came about because Susan developed two suspicious sores about two weeks ago. They emerged quickly and had too many cancer-like symptoms for my comfort, especially since Susan had a pre-melanoma removed about 5 or 6 years ago. Thankfully, they've already begun to heal and evidently were not caused by anything internal, although their origin is unknown. We walked away with a really good antibiotic cream from the dermatologist and the availability of the ID doctor at UCLA in case we need him.
Lord, sometimes I'm tempted to ask why we have to walk this road of suffering, but I hold back. I know "why" is a mystery on this earth. It may not matter in Heaven. This road is crowded - I'm sure if I knew how many were making their way along, I couldn't bear it. Some people have it way worse than we do, so how can I complain? Some people's whining seems louder than the size of their troubles; but if they've reached their limit, how could I tell them to be quiet? It's better not to compare.
I remember the days before disaster struck. Susan and I were a team in marriage, as parents, in ministry, and in life. Our activities were intertwined in the fullness of those pursuits while the years tumbled out too quickly for us to notice – date nights, anniversaries, soccer teams, kids club, slumber parties, homework, bible studies, dramas, choirs, board meetings, work days, ski trips, the occasional doctor visit, and lots of fun along the way. How quickly life got up-ended! Our game board got turned over; and many things I thought were permanent simply fell off. I didn't know life could be so basic. Alive. Today. Each other. You. At times, it seems that's all we've had. Mostly though, we live somewhere in the middle – date nights have become doctor appointments, that sort of thing.
We grieve at losing the life we had and we grieve the absent promise that life will return to what it was. But what's surprising is that life still offers fulfillment and satisfaction. We have hope, joy, and peace, thanks to you. Somehow, we understand everything is ok. And we know you better. Knowing you provided for us while things were going well was nice, but having you provide for us while we suffer is phenomenal. There's something about your comfort now that tells us you love us, but in a way we couldn't notice until so much had been taken way.
Lord, you know we just met some new friends who learned their son had a brain tumor when he was just ten months old. That was their on-ramp to the road of suffering. You know our other friend just found out he has cancer after his surgery last week. That was his on-ramp. You know about my co-worker's friend whose 22-year-old daughter just died in a 405 Freeway car crash, leaving a toddler without a mom. Her family quickly merged onto the road of suffering. There are so many people on this road – in fact, I'm pretty sure every person on earth will take one of the on-ramps at some point. It's hard, Lord. Upheaval. We can't know why it happened or how it will turn out. And there's no off-ramp in sight. But you know all these answers – why the suffering, how it will turn out, where the road leads; and you choose to keep them hidden from us. That's ok, really, because you know what's best for us. Please help me to focus on you and not our circumstances. Help me to trust you with the mystery.
2 comments:
The greatest gift that we can give to another person is to share our story. I appreciate your willingness to invite so mony people into your story and speak of God the author of all our stories, and to do it in way that speks to people that have come to God with so many questions. Todd
Hi,
My name is Natalya and I found your blog after searching for people writing about living with a brain tumour.
I live in the UK and run 3 websites providing information and support to people affected by brain tumours. As part of the websites I am looking to add a 'blogs' section where people can see blogs from others dealing with a brain tumour around the world. I am writing today to ask if you would be willing to be included in this list?
If you are happy to be a part of this could you please answer the following and provide us with a photo of yourself if possible:
Name:
Blog name:
Blog link:
Type of Brain Tumour:
Grade of Brain Tumour:
Short Bio:
You can email me at natalya@btbuddies.org.uk
I look forward to hearing from you soon.
Kind regards
Natalya Jagger
Founder and Trustee
BT Buddies – offering information, inspiration and hope to anyone affected by a high grade brain tumour in the UK.
www.btbuddies.org.uk
email: natalya@btbuddies.org.uk
Tel: 05601 751226
Astro Fund - offering information, inspiration and hope to anyone affected by a low grade brain tumour in the UK.
www.astrofund.org.uk
Paediatric BT Buddies - offering information, inspiration and hope to parents, family members, teachers and other professionals who come into contact with a child with a brain tumour - This website is currently under construction.
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