Radioactive Pirate Vanessa

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Just wanted to pass along an update on Vanessa’s health today.

Recently what she calls her “eye bump,” a tumor below her one eye, has gotten significantly worse/bigger. This is causing her right eyelid to be half closed much of the time, and it’s also pushing her eyeball itself kind of upwards from where it was.

Left eye / Right eye

Left eye / Right eye

It’s not causing her a lot of pain and discomfort (although I suspect it would if her pain sensors were working right), but it has been causing her to have some pretty irritating double vision issues. Tracy from hospice suggested than covering that eye with an eye patch would take care of the double vision, so Vanessa’s been trying that out, and finding it helpful so far! She’s still figuring out what she likes with the patches, so far trying both the bandaid-like sticky kind and also the good ol’ string-around-the-head-Arrrrg-I’m-a-pirate kind, too. ;)

V eye bumps

When she tugs down like this, you can really see the distinct bump(s) and how it’s pushing on her eye. The inside red parts are bulging out compared to her other eye.

The patch has been a welcome reprieve from the double vision, but the tumor itself is a cause for worry. We know that the tumors are likely growing everywhere in her body, and this is basically what we would expect to be happening now, as no treatments are really working to control the cancer in V’s body any longer. However, the location of this particular tumor so near her eye has the potential to cause some serious pain and uncomfortable symptoms down the road, especially if it continues to grow (and as it’s growing quickly now, it seems it would keep going).

Thus, on the suggestion and recommendation of her oncologist and radiologist, late last week Vanessa was fitted for a new radiation mask, yet again. She goes back this afternoon to begin a course of 10 or so daily radiation treatments, targeted on the area of the bump and her eye. They are dialing up a lower dose of the radiation to minimize the damage to her actual eye, while still providing a benefit. So the bump might not shrink (although it could), but it hopefully will be halted in its growth from this treatment, preventing further vision and pain problems. The treatments are palliative in nature, so our hope is for them to improve V’s quality of rest-of-life over not doing the treatments, but we expect no life-lengthening benefits from this course of radiation.

Sticky patch! The blue markings are in preparation for the radiation.

Arrg, matey! Sticky patch. :) The blue markings are in preparation for the radiation.

Even with the lower dose of radiation, there will, of course, be side effects from the treatment. On a superficial level, for the next few weeks she will have permanent marker dots and lines on her face circling her eye, so they can line up the radiation equipment precisely right each day. That, of course, will be washed off when the treatments are complete. More seriously, she will likely lose her eyelashes and eyebrow on that side of her face, potentially permanently. Vanessa’s skin may “burn” or turn red in the radiated area. Radiation near the eye like this also results in a cataract to the eye getting zapped. Since V no longer drives, the lack of depth perception from this might not really effect her, but if she is bothered by it, the cataract can be later fixed via surgery.

Billy and Mom and I went into the radiology appointment carrying thoughts and questions around all the pros, cons, side effects and benefits of doing the radiation versus not….  but once we heard all the facts, it seemed like an obvious choice to go ahead with it. The potential next steps of the eye tumor seemed particularly gruesome and uncomfortable, and the vision degradation it could cause would lower V’s quality of life considerably. Of course, Vanessa having to go through the treatments themselves, as well as the associated side effects, was all certainly no small thing to consider, but still seemed preferable to the tumors growing.

V was very agreeable to the plan, as well, although I am not sure how full her comprehension is. It’s almost like she’s been getting treatments and surgeries and taking pills and seeing doctors for so long, that this sort of thing just feels like “normal” to her and like, well, why wouldn’t she do it? ;) But I feel confident it’s the right move, too, after we considered the angles to figure out the least of 2 evils.

I am happy they can do something to stop the growth of the nasty bugger, but it surprised me how hard it hit me to have these conversations and decisions again. It’s hard to be back here again in this life place where Vanessa is doing treatments, having side effects, needing to venture daily into the land of medical care and being a patient and having things done to her. It makes me realize the subtle differences in quality of life that hospice care can support – her normal recent life, by contrast, has been hanging out at home, doing things she enjoys and timing naps whenever she wants, NOT feeling like a patient, and us doing things with her. Going into hospice, it obviously sucks (understatement alert!) because you are aware that treatment conversations are slowing and dying conversations are approaching. But at the same time, hospice really is a freedom of sorts from being so focused on the medicalities (I made up that word) and appointments. Now, though, with this eye bump and radiation, we find ourselves with Vanessa straddling that line, with one foot on both side of the care continuum, living elements of both sorts of lives. Since the radiation is palliative, she’s remaining on in the hospice program while undergoing it, but it’s brought a new combination of feelings- a mashup of the living and the treating and the waiting and the dying.

I’ll update again once treatments are underway over the next few days. During the radiation, she might need to wear this sort of lead eye-protector contact-like thing, which I can only imagine feels weird (if not awful) – so please send good thoughts to Vanessa at about 4pm today! :)

We've been camping as an extended family the past few years over Memorial Day weekend. Dad shoots off rockets on the beach and it's one of my favorite parts of the trip. This year the blasting into the air and falling gently to the ground gave e goosebumps (that I'll likely have to explore in its own future blog post, ha!).

We’ve been camping as an extended family the past few years over Memorial Day weekend. Dad shoots off rockets on the beach and it’s one of my favorite parts of the trip. This year the blasting up…. and soaring through the air… and falling gently to the ground… gave me goosebumps and so many swirling this-is-a-metaphor-for-life kind of thoughts (that I’ll likely have to explore in its own future blog post, ha!). Family = love.



  1. Lysa says:

    Vanessa you and your family amaze me with every post! You are a true warrior. I love the pirate look:) you’re too cute

    Stay Strong,

  2. Nicole says:

    Vanessa, I love you and pray for you and your family EVERY
    day. You are beautiful, inspirational,and a gift to all who have
    followed you and your story. Love & prayers,

  3. Joules Evans says:

    Thanks for the update, Jess. Always praying for V, and Billy, and y’all. Sending love. Trying to live sincerely, for V, and for me too. May this radiation do its thing and zap the nasty little bugger eye bump all gone.

  4. Tami Boehmer says:

    As always, amazed by your family’s support and the remarkable, loving Vanessa hanging in there day by day. So glad there is something that can improve her quality of life. Prayers, virtual hugs to you and yours.

  5. Big hugs and prayers to you Vanessa and your entire network
    of family and friends. I had the pleasure of hearing you recite
    your Live Sincerely pledge and watching a video of you at Christ
    Hospital a few months ago regarding the Scar Project. From one
    cancer sister to another – I think you are an amazing person
    Vanessa and your strength is an inspiration to me. You are truly a
    beautiful person on the inside and outside! P.S. I have your Live
    Sincerely magnet on my refrigerator at home and I say a prayer for
    you everytime I look at that magnet. Love, prayer & hugs to
    you. Melissa

  6. jena says:

    it’s been about 6 weeks since this was posted. i really hope that everything went well. your family is, as always, in my thoughts.

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