Providing Medical Care to Geeks

As I think many of you know, one of the ways Kelly and all of us geeks deal with this stuff is by geeking out about the science. Ooo cool- look at the CAT scanner! Or "I have the digital images from my own brain MRI!"

Often, we run into another geek. Like the hospital pharmacist, who happily discussed steroid blood levels, ½-lives and tissue persistence for this particular drug, while answering geeky questions about timing medication doses. I am guessing most patients don't ask that, but he went with it. I love that.

Picture this. We are at Dana Farber Cancer Institute, the preeminent research and treatment facility in several states. These doctors are the best.

And my lovely wife interrupts the neurological exam, so she can tell them a long disjointed account about how when the tumor had paralyzed her right hand, not only was her hand paralyzed, but also the mental function of getting words to come out of her left brain onto paper or keyboard. She could not type or write with her left hand either- unless she said the letters out loud, to download the letters into the other side of her brain.  As the steroids reduce the inflammation around the tumor, the hand is mostly back. And so is the written language- “Now I can type pretty well again, and write big sloppy notes. Isn't that cool?” she asks, a little breathless.  And the neurosurgeon, and the neuro-oncologist shoot each other a look. I am thinking to myself “They think Kelly's nuts, and off topic...” But no! “That is interesting” she says. These people are the biggest neurology geeks on the planet! They get it!

So that helps. Kelly whupped breast cancer by brute force, Polyanna attitude, and geeking out. And we are applying the same tools to brain cancer. So there.

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

Just... Thank You

From Kelly: 

Where do we even begin to say thank you to this community for the support we've been given. We feel so blessed.

Ever since my seizure 2 weeks ago this community has rallied around my family and supported them. I've been stymied trying to express it perfectly, so I couldn't get anything out. So I decided I'm going to leave the emotional blog for another day and in this note I will just say “thank you”. Most importantly, thank you for taking care of my family.

We have been showered with thoughtful cards, wonderful food, amazing help at home and flowers you've sent! More on this in my next post – but here's a picture of some of them so there's something to look at.

And for now, here is the quick medical update:

I came home from the hospital and quickly started feeling almost normal. The most notable symptom is my right arm. I went from having about 20% use of my right arm to 80% by midweek and now it all moves, but doesn't work quite correctly. I can't type and can't rely on being able to hold onto things with my right hand- I don't pick up anything glass with it! I found an online dictation program that's helping me do some things, but it's hard.

In general, I feel back to normal. My main medical issues are side effects from the medications. The steroids that are giving me my hand back are making me a little hyper (ooh- that's something Kelly needs!!) And they have been bothering my sleep, so I am timing them carefully, so that's a little better.  I have some days where I'm just exhausted from lack of sleep. The other side effect of the steroids is being hungry all the time!

The anti-seizure medicine seems to be doing well and is not bothering me much.  I'm a tiny bit unstable on my feet because of it but nothing that's a problem.

The appointments to start figuring out what's going on and what to do start Tuesday.

We amazingly have a “second opinion” appointment at Dana-Farber Cancer Center in Boston on Tuesday (3/15) before we even get our first opinion appointment!

On Wednesday we will be at UVM Medical Center for our first real meeting with the neurological oncologist to look to look over the results of the biopsy and the pathology report and start to make a plan of action.

And I have another appointment on Thursday, so this week is pretty booked already!

We will actually be leaving on Monday to get down to Massachusetts and stay with Barry's brother David and sister-in-law Meredith, then will head into Boston in the morning on the T. Hopefully, we can make lemonade from one of these lemons by getting to see Aliza before we head home.

By Thursday evening we will probably have some news of the plan of attack.

Can't keep a good Mom down

Ben is racing this week, it's his senior year nordic skiing for Clarkson, and this week is the National Championship meet.

Now normally, Kelly is one of the instigators of the "crockpot Moms".  These are the parents (including us Dads) who come to cheer and bring food to feed hungry racers.   Someone else must have done the email coordinating because she was, you know, "busy" last week.  But that did not stop her from being there for the race!

Grampa Terry was able to go too, so they went together to the Lake Placid Olympic complex to see Ben race.  Terry got lots of good pictures there, too.  Kelly stayed over and went to today's race, then got a ride over to Chimney point, and Barry picked her up there.

Thursday is a rest day for the skiiers.  I think maybe it will be a rest day for Kelly too.

Feeling well

Kelly is feeling well today and is encouraged by the fact that the medicines are helping her hand work better, at least for now.  Yes, folks, that is the right hand she is using to sign at you, the one affected by the tumor.  One week ago, it was not working at all.

People at church were very pleased to see her back!

You said you wanted to help...

We promised we would let you all know how you can help, and here it is!

I set up a calendar on carecalendar.org.  Here are the details...

carecalendar.org
There are 3 yellow boxes - the one on the left has 2 boxes to fill in
Calendar ID - 231395
Security Code -  2440

Right now, we have asked for a few meals a week, and some "housework" which is help for mom with typing and other office work.  Depending on what ends up happening with treatment options, we may eventually also need help with rides to and from the hospital (one of the issues with having a seizure is that mom isn't allowed to drive for 6 months).

We are so thankful that we have all of you to help out and support us during this time.  This is going to be difficult, but having a huge community of people rooting for mom and helping take care of the details will make it so much easier for our family to really focus on helping mom get better.

She's home

Ahhh.... it is a huge relief to be home.  Mom doesn't look sick now that she is wearing normal clothes and walking around.

We are looking forward to the fact that tonight we can all stay with mom and sleep horizontally!  Every other night someone got to stay with mom, but didn't get to sleep horizontally.  The recliners they bring into the room for a family member staying in the hospital are quite comfortable, but they aren't quite a bed.

As we are checking in with people, I just want everyone to know that after people see or talk to mom, they feel better.  So, even if you haven't gotten a chance to talk to her on the phone or see her in person, know that she is probably doing better than you imagine.