There is news, and it's complicated. We had a long–and I think, ultimately very helpful–phone call from the Director of Clinical Services in the Neuro-Oncology division of University of California-San Francisco. I'm still trying to get my head around all he said.
In sum: Richard does not qualify for their vaccine clinical trials. First, because his tumor began as an astrocytoma (a lower grade of brain tumor) before becoming a glioblastoma. (Remember statistics? In order to rule out a complication, only one type of brain tumor is allowed in the study.) Second, the area of Richard's brain involved in supplying blood to the tumor is huge, essentially his entire right hemisphere. To remove 90 percent of that would be risky and could mean Richard's quality of life would be seriously impacted.
His suggestion: A course of Avastin infusions, "a month, followed by a scan to see how well it's working, and then perhaps another month if necessary." We had considered Avastin, a chemotherapy drug that slows or stops tumor development by shutting off the tumor's ability to take over and multiply the brain's vascular system, last fall and rejected it because we had read about some pretty horrific side effects. Why consider it now? Because of the swelling in Richard's right hemisphere, which is seriously impacting his brain function. It seems like addressing the swelling–and slowing the tumor growth– as quickly as possible is critical.
I asked about side effects, which include heart attack, stroke, and sudden death. The UC-SF clinical practice director said he'd been administering Avastin for 12 years and had never had a patient die from side effects. Okay… He also said that Richard is at low risk for the nastier ones because his cardio-vascular system is so healthy: his blood pressure is great, he has no history of heart attack or stroke, and his scans don't show any sign of bleeding from the two brain surgeries in March.
The timing of the doctor's suggestion is interesting: Avastin can only be administered more than 28 days after the most recent surgery. It's 23 days today, and we've got a consult coming up with Richard's oncologist.
So. We'll talk with Richard's oncologist soon, and the possibility of Avastin infusions will be part of that conversation.
Something needs to happen soon, because while my love is generally in good spirits, the left side of his body (controlled by that challenged right brain) is beginning to show some serious "deficits": his left hand is less coordinated, the left side of his face sometimes droops, he misses things in his left-side peripheral vision, and today he had a moment of slurred speech. Yikes. Fortunately, the slurred speech disappeared as soon as I made him sit down. All together, it's pretty blinking scary right now being his companion/caregiver.
Sometimes I fall apart and loose my temper. Sometimes I wake in the night and can't find sleep, trying to sort through all that's going on. And yet…
I haven't lost my faith in miracles.
Because despite his deficits, Richard's spirit continues to shine brightly, as is evident in the photo at the beginning of the post, which was shot by my cousin Halvard yesterday afternoon in Salida's Sculpture Park, where we were admiring Richard's sculpture, "Matriculation."
How could I not have faith in that smile?
*****
We are so with you and thankful you are sharing. Love to Richard,and,especially, love to you. t
susan, sending love. looks like a course is showing itself, hard as it is.
Susan – I am 100% certain that you got some very good advice from that clinical trials director (that’s the oncology nurse in me showing)… I am glad that the timing is what it is with this tidbit of info and the upcoming dr appt.
And, [now taking off the RN hat and putting on the caring friend hat] never ever stop believing in miracles – they do happen!
You & Richard are in my heart and prayers.
It does seem, step by step, to come together. Each time I come here to read the next instalment, I hesitate. And each time, there is, a step forward. (The story is amazing, and your writing it, even more so!)
Oh – like Elephant’s Eye, I too, hesitate – but press on to find the news. I think this is an amazing story and you both are so brave to put it out there for us all to share and love and support you. Love the photos – and love you both as always.
Pretty much nothing about this journey has been simple! Just keep remembering to take care of yourself while you take care of Richard. The love and companionship you share are inspiring.
Milagros
We are all hanging on with both of you. 
The title of this post contains such clear vision in combination with irony. What a series of exercises this experience presents in maintaining one’s balance while the world around takes dramatic shifts (for both you and Richard, each of you your own type of balancing, your shifts both separate and together). The shifts are intellectual, physical, spiritual, emotional. This latest–mostly intellectual. Getting one’s mind around the options, and the Avastin, formerly not acceptable, may be turning toward being a best option, now that things have shifted.
I’m glad Halvard and your dad could come to visit, and I hope you are doing some compensating resting now. (That probably simply means doing what you already need to do in a more balanced way.)
Love to you both.
Well, now y’all know. Even though it wasn’t what you’d hoped for, there’s a certainty that y’all can continue with. (And whatta blessing to have gleaned such info from UC-SF’s Clinical Director. Especially to have received real-world, real-people “statistics” regarding Avastin.)
And, of course, whatta a humongous blessing to have been gifted an improptu visit from the Tv/weit boys!
Thoughts, prayers, and hugs.
When you wake in the night, say outloud to yourself, God loves me, Richard loves me, my friends love me. Repeat it as a mantra until you feel calm.
When you lose your temper, forgive yourself immediately. You are holding up the world with one hand tied behind your back, and you’re doing it brilliantly. Give yourself permission to have “those moments.”
Love to you and Richard on this beautiful spring morning, Susan. Wishing for just the usual miracles.
Faith without anger and fear isn’t faith. I feel how real yours is because it’s being tested so mightily. I trust it and share it because you are so honest about how it is being tested.
I trust and feel it myself because I see it in your smile. I think that that smile should get a good dollop of credit too. Richard’s is wonderful, no doubt about it, but, yours is the one Richard looks into most often. Surely it is the source of some of his grit, stamina, and spirit.
It’s good to see your dad out and about and doing his life.
Keeping faith, sending Big Love.
Trilla, Thank you for that steady companionship and love!
Velma, It does look like we’ve got some direction, and we’ll act on it as soon as we can consult with R’s oncologist (hopefully we’ll hear from her tomorrow about consult schedules). Blessings.
Lee, Thank you for your corroboration and for the caring friend advice too!
Diana, I’m sorry for how wrenching the story is, but thank you so much for persevering. Your voice is so welcome.
Cathy, Thank you for that love–it’s precious. I sometimes wonder if I’ll be able to continue on, and then I remember this wonderfully caring community and the grace that is life, and I walk forward again…
Kathy, Maybe it’s human nature to want life to be simple, even though it never is. It’s an odd thing to think that the way we’re walking this journey can be inspiring, but I’m glad it is. At least we can be useful that way!
Lindy, Thank you–milagros are what we hope for…
Deb, I do like to play with words, and irony. I guess that’s the Scots/Norwegian sense of humor! I think what I feel most about all those levels where we’re having to shift so dramatically is weariness. I want a quiet patch to rest in for a while. Seems likely that we’ll be headed back to Denver soon, to address Richard’s continuing left-side deficits at least temporarily with steroids for his brain. Sigh.
Eduardo, It is a relief to know, and it’s good to have another path to investigate. The brain swelling and Richard’s left-side weakness is the immediate concern, and that may mean going back to the VA hospital tomorrow. We’ll see. It was a treat to have the Tv/Tweit duo visit, though I must say I’m feeling a bit worn out from taking care of everyone…
Heather, You are just the best. Thank you for those wise and loving reminders!
Theresa, Love to you as well–our miracle today was a lovely shower of wet snow overnight to moisten our drought-dusty landscape. There’s a book in this journey, you know…
Linda, dear… You are so right about faith. It’s got to come from who we really are and what we really live through in order to be real. The smile is harder to find some days, but I’m doing my best. XO.
Wow! Such hard decisions. Good you got information from the truly informed. Still sending healing focused energy every single morning and night to both of you. Fe en Dios y adelante wherever that might be as there is no other alternative. Abrazos fuertes for you both. Steroids are so psychoactive reemmber….Saturn in Western astrology is on your Mercury ruler in Libra making you tired and realistic and lonely for a while yet.
Susan and Richard, Your strength again shines through, even if you’re feeling it fray. You have both surpassed what seems humanly possible. Getting good guidance from the clinical director sounds like a gift in itself. May the miracles continue. You are in our thoughts and prayers.
Julie and Gerry
I’m sorry you didn’t get the treatment news you wanted, but glad that there seems to be an alternative. I have a “miracle” story of my own, and it involves a lot of online friends who decided to pray for me after I got a wrong (?) diagnosis of cancer 16 years ago. Either I got my miracle, or my doctors were wrong. Either way, I’m still here.
Love ya both!
bobbi c.
Anna, We need toda la fe–mas fe que parace posible a veces!–that we can muster. I think my faith is mostly in the sacred force we call life… Yes, steroids are psychoactive, but the right brain swelling is so bad it’s starting to look like Richard’s left side is failing. So we’ve got to do something. Thanks for the hugs, the support, and the astrology forecast. Sigh. But there it is.
Julie and Gerry, Bless you! I guess sometimes the strength is in allowing oneself to be weak, and to learn from it and recover. Today’s miracle is the rain that is gracing our drought-stressed valley–the first moisture in months and months. Hooray!
Bobbi, I’m glad you had your own miracle, and that you have had all of those years to continue to learn about life since then. It’s sometimes just enough to know we’re here, isn’t it? Hugs back…
Steroids are necessary but remember how strange it makes him. Of course, it is all strange now. The Deity I referred to was probably the Medical Deity from, UCSF.
re: miracles.
I saw my rheumatologist last week. After four years of telling him I was going to recover…he agreed with me! It was easy. All he did was rediagnose me: I didn’t have psoriatic arthritis after all, which is chronic, debilitating, and permanent, I must have had reactive arthritis, which is dreadful, but temporary.
Here’s to miracles!
Anna, I love the idea of the medical deity from UCSF–thanks for that chuckle! And as you say, strange is relative right now. He’s actually better on steroids than he used to be, so perhaps his body has become a bit accustomed to the crankiness-inducing part of their interactions…
Cindy, That’s wonderful news! Congratulations on figuring out how to make yourself well. Now just keep yourself that way. ;~)
Sending hugs and love and the scent of fresh baked free range sourdough bread. And moments of calm and restoration for you both. Breathing deep for the times when you might forget, L.
Louella, Thanks for those deep breaths and the hugs and love and smell of fresh-baked sourdough bread! We’re sorry we won’t be in the Bay Area to see you, but perhaps we’ll manage a train trip out your way anyway. We’ll just see how it goes…
Susan, you are sooooo welcome to everything! Would love to see you/hug you/laugh inappropriately/extremely appropriately with you any time. And if the train trip would be so neither one of you needs to drive, just remember my sweetie has a big car/SUV(?) that’s great for road trips and gentle to the earth. If you need a ride somewhere, I would happily be your driver. Would be so happy to drive you from there to Molly (or wherever) with some wonderful book on cd and the two of you holding hands and napping in the back seat. (I hope you know I’m a girl who never ever offers things that wouldn’t give me joy to fulfill.) Being me, one parenthetical follows another… having done the CO/CA dance for more than a decade now, I have many favorite stops along the way. Would also be delighted to share those with you.
My schedule is flexible. I wish I could give you more than that but am happy to offer what I have when (perhaps) you need it.
I wish I had cures or magic wands or something much bigger than a heart full of love, but I send you what I have.
Much love,
Louella
Louella’s post has me tearing up. I love that image of the two of you holding hands as you cruise along.
I’ll chip in for the gas and road munchies.
Big love.
Louella, You are amazing! Thank you (and the amazing ZZ) for that generous offer. We would love to see you and engage you as a driver for a jaunt from San Francisco to Big Sur or around the Bay Are if that works out. The train appeals to both of us for sentimental reasons–our first trip together nearly 29 years ago was by train and it was just a wonderful way to see the West… For now though, we need to get Richard’s right-brain swelling attended to, and do something to slow the tumor down. ;~)
Linda, dear, Bless you! I like the image of us in our own compact compartment in the train holding hands too… We’ll talk about a trip once we get past this urgent need to take care of immediate issues. XO to you and your four-footed community.
I’ve been doing a little catching up and I’m sorry to read of recent events. Here’s hoping Avastin, if that is the course you choose, will slow everything right down. Keep looking after yourself and I’d like to send you some of the rain we have right now – I’ve had enough of it!
Lynne, I’ve been thinking of you lately, casting my thoughts and good energy around the globe to you there in the southern hemisphere, and hoping you’re doing well. I wish you could send us your rain, and I’m sorry you’ve had so much of it. We met with R’s oncologist yesterday am and had a good talk; today is neurosurgery, and then home again to where I actually have reliable internet access and can write a new blog post about what’s ahead–so frustrating to be unable to connect except for moments here and there! Be well.