Treatment Plan Update

We've been promising a “treatment plan update post” for most of a week, and here it finally is. Creating a summary version doesn't play well with Kelly's skills, so I (Elizabeth) have stepped in to create a summary for you of Kelly's following 2 or 3 pages.... That way you have access to whichever version you want. :-)

Elizabeth's Summary:

This has actually turned out the “best it can” for a treatment plan for brain cancer. Both doctors at the UVM Medical Center and the consult at Dana Farber came up with the same answer. That helps make the “decision of what to do” easier. There isn't really much a decision to make, and Mom & Dad feel confident that this is the best track forward.

The great thing about this course of action is that Mom can be treated right here in Burlington. She will have a combination of radiation and chemo treatments, five days a week for about six weeks. Then, after a short break, she'll switch over to a one-week-per-month chemo regimen for about a year. She's lucky though, the type of chemo she will be on is pill-based, and it doesn't tend to make people sick the way “normal” chemo does. After a year of this treatment plan, they will reassess and make a longer-term plan.

Yes, she has brain cancer. Yes, she's going to be in treatment for a long time. But yes, it's actually turning out “as well as can be expected.”

Thank you all for your love and care for my parents & our whole family!

Mom's very long version (with all the details) below.....

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Okay, this is the boring, “Here's our treatment plan” post

I was supposed to write this post for the last 2 days, sorry for the delay . But it should go pretty fast because I have described The Treatment Plan to about 12 people in the last 48 hours – I really have it down pat – just ask my poor kids who's been within earshot for the last couple days hearing me say the same thing.

So, it will be good to get it written down. Then I'll have this post to point people to and I won't have to bore you with my long drawn-out “Kelly has to give you all the details” style .

Feel free to ask me more about it... you know me, I can always give you more details.

But now you'll all be caught up with our current plan of action (and probably have way more information than most folks need).

But I'm no good at doing the short concise version so you're stuck with this.

Overview of what's next:

So, the good news is that all of the doctors agree with what my short-term treatment plan should be, so we can start right away with complete confidence that we're doing the best we can. That is a huge blessing.

So, if you haven't heard already, what I have is brain cancer and it will need radiation and chemo to make it stop growing.

The radiation regime is almost exactly what I did for my breast cancer two years ago, so that will be very familiar, it is really pretty easy.

When I heard the word chemo, that made me a little freaked out, but thankfully it is pill form chemo, which most people tolerate really well. It doesn't actually make you very sick. Some people get some nausea, so they have you take a nausea pill before you go to bed, then take your chemo pill and go to sleep.

For the radiation, I will go in to UVM Medical Center every weekday. It's very fast, they have you in and out of there in 20 minutes. And they take such good care of you there that it is a good experience.

The side effects of the radiation will be pretty minimal at the beginning and as the six weeks go on I will get more and more tired. The exhaustion will continue for a couple more weeks after I'm done.

The other minor side effect may be a little hair loss right at the site of the radiation. But I have lots of hair; I probably can just cover it up .

The exhaustion at the end is sort of like the exhaustion of a new mom. I will need naps, but I expect that I will be able to keep working. I plan on continuing as the manager of the Jericho Farmers Market (with lots of volunteer help and support from the board and the vendors). And I plan on continuing my Wild Kelly's Wild Edibles business. I will just have to do it on a slightly slower scale for a while.

So, I will do this 6 weeks of chemo and radiation (last week of March to the first week of May.) Then they will give me a five to six week break to regain my strength and have a break (the second week of May through mid June).

Then I will start a one-year regime of 1 week on, 3 weeks off pill-form chemo. So, starting in June, the second week of every month I will take slightly higher dose of that same pill-form chemo five nights in a row, and then be off it for 3 weeks. The doctors said that most folks say they feel fine the first couple days of that week and feel pretty crummy days 3,4, & 5.

And by the beginning of the next week they feel back to normal. I can deal with having a couple of crummy days a month!

At the end of that year we will reassess and see how things are going.

So, that's the plan for now. They'll be doing weekly check-ins with the doctor, MRI's every other month, and keeping a close eye on me.

I was going to include the story about our road trip, and getting the two opinions, and talking to the doctors, but it's already gotten too long so I'm going to stop here. I'll do another post about that and call it something like “YAY! All the doctors agree!”, because there's a lot to share about that.

As of today, March 19, I'm feeling amazingly normal . The only real symptom I seem to have is some continued loss of function in my right arm . I have about 90% of the movement back, and about 75% of the function . I still can't really type, but with effort I can hold a pencil well enough to write myself a note. I'm using a voice dictation program and that's how I can to do stuff like this, but it definitely takes a lot of extra time.

The improvement in my arm is because they are shrinking the swelling with steroids. Those of you who know me well, can just imagine what “Kelly on steroids” is like! YUP! It It is just as insane as you can imagine – my poor family – hyper Kelly is even more hyper!

The other problem with the steroids is that I'm not sleeping well. So I'm a bit sleep deprived, kind of like a new mom. But they're supposed to be lowering that dosage over the next couple weeks, so hopefully that will improve soon.

There's so much more I want to say, mostly about how wonderful people have been, but I'm going to put that in another post. Thank you all! - Kelly