{NOTE: This was originally published on Vanessa’s CarePage. We are copying all those posts here to have her story in one place that all can access. We are back-dating the posts to match when she originally published the post there.}

Posted Jun 21, 2012 11:52am

Jess here, with an update on our lovely V. :)

Vanessa had her follow up MRI last week (and it was much quieter this time, whew!). The results showed the cancer is holding steady – so no smaller than before whole brain radiation, but also no larger. There was also some swelling showing up, likely a side effect from the radiation. (This swelling is what was inconclusive with the last test… it could have been crazy more cancer, so swelling was the best-case for the unclear spots to be.)

Dr. Cross (radiologist) explained the new plan is to taper down the steroid dosage to the lowest possible, but not probably go off it entirely any more – without the steroids the headaches are unbearable, and with the steroids V feels bloated and rashy and hungry (oh man, soo hungry!), so the goal is wherever in the middle best minimizes the steroid side effects while preventing the horrible headaches.

We also asked him where in her brain the tumors were, and he mentioned that the largest tumor was about 1 inch and in the right frontal area, which is where emotion and thoughts are formed. This area controls things like memory, putting together a concrete thought or sentence, etc. Vanessa definitely is feeling some changes, feeling pretty annoyed at the “loopy” or “fuzzy” moments she has, while also having clear times, too. She’s gotten dizzy a number of times, occasionally even falling, but she has said that it’s not from weak legs or a physical reason as much as her brain getting confused while she walks. So she’s taking it slow and someone is always around hanging out with her, so we can be there to lend a hand or shoulder when she needs it.

I think it’s fairly frustrating for Vanessa to not feel totally her normal self, and she worries that people will think she’s stupid when she struggles to find a word or hone in on what she’s trying to think. Luckily though, with her bald head and visible scars, people out in the world seem to have an inkling of all that she is going through, and have been very patient and understanding… and my whole life I’ve been her “pocket dictionary Jess” so I have lots of practice knowing what word she is looking for and helping with that! ;)

Speaking of bald heads… her hair is growing back in, WOO HOO! V’s comment to this is: Finally! :)

We also met with Dr. Brennan (oncologist) this week, and after reviewing the MRI results, he said those dreaded words you know will happen once you are stage IV, but that you still aren’t ever ready for… There is nothing more to do. So the cancer was steady from last scan, but since the tumors remained after whole brain radiation and there are so many in so many areas of the brain, there isn’t anything else to try at this point.
Given that, Vanessa no longer needs to do her methotrexate (head chemo for the brain lining mets) or zomeda (bone treatment to prevent bone issues), although she will continue the anti-hormone treatments (“butt shots” as she calls them!:P) to keep the body cancer in check.

We’re meeting with hospice this weekend to meet the team and learn more about what they will be able to do to help Vanessa, and help us help her too. Hospice is such a scary word and holds so much meaning with it, but what’s also true and important is that really, even with Vanessa now in hospice care… nothing has really changed day to day. Hospice really just means that there isn’t a next cancer treatment to try, and so we can now make each decision based on what’s most important, today, right now, in the short term. V will absolutely still be treated for any pain as well as any other ailments that are still treatable, and she is certainly still up and about and able and enjoying things and laughing and smiling and listening and doing. We hope for the cancer to grow slowly when it starts growing again, and meanwhile we all live each day in the moment.

We keep looking back at the Live Sincerely Get-Together party pictures together, and are thrilled it went so well and grateful to have such great pictures of everyone there to relive it through. Vanessa is thinking about what next project to start (maybe some sewing?) and the new, gorgeous IKEA kitchen is well underway. We’re so excited to watch the Emmy award show this weekend to see if they show a clip of “Baring It All” (the SCAR Project Documentary by our friend Patty, that Vanessa was in) when it WON AN EMMY LAST WEEKEND! There is also a SCAR Project opening in DC in October and January in LA, so the message moves on and out… So life with the words “hospice” having been said, is a lot like life before, just with even more people in V’s corner. :)

Vaness has lately enjoyed seeing people in small groups for lunch, so we can set up to meet up with anyone who would be interested! You can call or email Sharon, Billy or me/Jess and we can figure out how to make it happen.

If anyone wasn’t able to write a page for Vanessa’s “message book” at the party on the bridge, you can still contribute! Write/draw/anything you want on any letter size piece of paper (one or both sides is fine) and we’d love to add it to the already awesome pages of Vanessa’s book. You can give to Billy/Sharon/Jess, or mail to Vanessa at her and Billy’s house.

Thanks for everyone who has been offering to help… we’ll update here soon what you can do, once we organize our ideas on what would be most helpful.

Live Sincerely! Today! Now! Go do it! :)