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.

Everyone loves mom... in their own ways

Everyone loves mom, and it is so great to see.  The personality psychologist in me has been noticing the variety of ways that people express it....

I get emotional and cycle between crying and irrationally goofy.  Daddy gets all the medical details and makes a plan while giving me a hug.  Elizabeth takes care of everyone, which over the last 2 days means that she has been very bossy about making me stay hydrated.  Ben and Noah haven't been here for my observation, but they've been keeping up-to-date as best they can while continuing to be their brilliant selves and work hard on their school work.

As for the rest of you...

Some people pray.  Every prayer chain on the East Coast (and a few across the country and around the world) have been lit up.  We are worried and upset of course, but I think this feeling of "this is going to be okay, whatever that means" is the feeling of hundreds of people praying for us.

Some people bring food.  We haven't even set up a meal coordination thing yet (but we will!), but the lasagna fairies showed up, as did the soup fairy, the muffin fairy, the kimbop fairy, the salad fairy, the chocolate fairy, and the cookie fairy.  We have had good food ready to go when we come home to sleep, and more good food to snack on at the hospital.

Some people make sure she gets the best medical care possible.  The UVM medical center have had so many specialists coordinating on her case, and the nurses are careful about making sure they have the right orders, and listen if we have concerns or heard something different from the doctors.  Dad's sister is a professor at Yale medical school (and is working all of her connections with their neurology department), one brother lives near Dana Farber (and said mom is welcome to stay at their house during treatment), and the other brother just listed off all the best neuro-oncology facilities in the country (and made sure we knew that if we wouldn't be pushy about second opinions, he would).  They know mom is too special a lady to mess around with anything less than the best possible care.

Some people send gifts.  Flowers, cards, bookmarks, puppets.... mom's hospital room was very cheery.  (And we had to borrow a cart from the nurses to bring everything to the car....)

Some people show up. As Grammie said when she arrived from New Jersey, "As Woody Allen says 'half of life is showing up'".  Mom wasn't up for a lot of visitors though, so those of you who couldn't show up in person showed up with phone calls, texts, e-mails and facebook messages.  We knew mom was loved, but wow!

Thank you all so very, very much!

Going home!

We should be going home today!  We don't have official discharge orders yet, but everything we've heard from doctors indicates that they are sending her home.

The neurosurgeon said the biopsy went well and the CT scan they did afterward showed no bleeding or complications.  That means he can hand mom off to a neuro-oncologist, and we're hoping that her work will be entirely outpatient.  

Mom just went for a walk, and she is very stable on her feet.  She is getting bored, so she and daddy are working on a crossword puzzle.  She's antsy to go home!

Thank you all for your offers to help.  Some time in the next few days, we will be setting up a page on one of the volunteer organization sites and then we'll be able to take you up on your offers.  We will make sure to update on the blog when we do so!  

Biopsy preliminary results

Kelly's biopsy went fine.  There don't seem to be any complications.

They were able to get preliminary results quickly.  It is pretty clear that the lesion in her brain is a cancerous tumor.  Right now, the most likely scenarios is that they will treat it with chemo and radiation, but not surgery.  However, once they do more testing and find out more details about the cancerous cells, we will have all the information to make the best decision about treatment.

We are all pretty shocked.  I don't know what we expected it to be, but we were hoping it wasn't cancer.

All the upsides and answers sound stupid right now, but we are saying them anyway.
1. We have an amazing support network, as all of you have already proved
2. Daddy, Elizabeth and I are all here to take the news together.  Ben has his friends from InterVarsity, especially his girlfriend Melanie.  Noah is right near Grammie Judy, Grandpa George, Steven, Diane, Sophie and Josie.
3. Mom is strong, strong, strong - she beat cancer once, and we hope and pray she can do it again.
4. It's going to be fine.  We don't know what version of fine, what that means, or what that will end up being, but it will be fine.
5. The hospital food here is really good... while mom was in her biopsy we all got mochaccinos - yum!
5. The view out the hospital window is gorgeous

Going in for the biopsy

They have to set up this frame to keep her head stable

They gave her some facepaint so they know where to put the frame

They gave her anesthesia and will now do a CT scan so they know exactly where to do the biopsy.  It will probably be a few hours before she is out of surgery.

We had a good night here, and I think mom slept pretty well.

Today mom is having her biopsy.  Check the end of the previous post for details about what that will be like.  Dr. Lin came in this morning early to check on mom and confirm details about the surgery.  She should be headed to pre-op holding very soon to get the frame put on, and her surgery will be a while after that (maybe around 12:00), but things could move.

We're thankful for the beautiful view out the window this morning.  It's only in the single digits out there, but it's beautifully sunny... and look at the view!

Sarah's twitter

Hi Everyone,

It's a little different than the Kelly updates, but God is being too good in this time to not share.  So, if you want to know every time God brings tears of joy to my eyes because of His goodness and closeness, you can follow my twitter....

https://twitter.com/balletsarah1
or follow the hashtag #kellysstupidhead

-Sarah

Wednesday Evening - 3/2/16

Today has been boring as hoped.  Daddy and I came in around 11:00 (after the roads had cleared up a bit) and Grammie and Grandpa were already here.

Elizabeth has done night duty the past 3 nights - what a trooper!  She was really tired today and feeling overwhelmed by everything she is missing at work, so she left before lunch time and headed home to get some good sleep.  She slept most of the afternoon, and says she is feeling a lot better now.

All of us headed down to the cafe for lunch, while mom took a nap and waited for her lunch.  We ran into Whitney from church, and it was nice to chat with her while we ate.

During the day we had a few visitors, including the Smiths, which was a lovely surprise.  Joan and Dan also stopped by, and it was good to see each of them again.  Grandma Lucy was here for the afternoon.  It was a good set up because the grandparents could visit with Mommy when she was awake, and then with each other when she got sleepy and needed to rest.

This afternoon, daddy went to work for a bit to catch up on things.  He, Elizabeth, Grammie and Grandpa are eating dinner in Jericho and then Daddy and Elizabeth will probably come here for a bit this evening.

We've been noticing that sometimes mom is not completely sharp all the time.... earlier, it was tough for her to read anything lengthy, write a text, or do other things that take more concentration.  Right now, she is reading the paper and reminding me of details about the biopsy tomorrow.  We think the difference may be that it has been a while since her last seizure med, so it may be that those meds that are making her a bit dopey.

Mom is positive as always, and isn't too worried.  As she keeps saying, there is no reason to "borrow trouble".... until we get results from the biopsy tomorrow we won't know anything, and there is no reason to spend energy imagining worst case scenarios.

Today we got more information about what that biopsy will look like.  She will go into pre-op around 9:00 am.  The will get her head stabilized in a brace and then take another CT scan.  This will allow them to know exactly where they need to do the biopsy.  She probably won't be actually going into surgery for the biopsy until around noon.  Keeping her head in that same stable position, they will then make about a dime-sized hole and then do a biopsy with a small needle.  They will take a VERY small amount of tissue, but that is all they need to run the tests to determine what the lesion might be.  They will plug up the hole with a titanium plug.  She will be kept overnight until Friday, and possibly for 2 days to make sure there are no complications from the biopsy.

It may take almost a week for biopsy results to come back, but they are hoping that they can send her home while we wait for those results.

- Sarah

Photos

Here is mommy and the view out her window.  You might not be able to tell, but we can see the lake and the mountains out the window!

Wednesday morning - snow day!

While sub plans had been written & team members coordinated with, both Sarah & I have snow days today.  While this means that roads are a bit iffy for traveling back and forth from Jericho, it takes one thing off the plates of the teachers in the family.  

No new news on the Kelly front yet this morning, and it's not likely there will be much.  It's only a few minutes after 7, so the "white coat parade" hasn't begun yet for the day.  Nurses are in and out to administer meds and check vitals, but that's the usual rhythm here. 

Today is expected to be a day of waiting.  Mom's biopsy isn't scheduled until tomorrow morning, so we don't really expect anything to change over the course of today.  We're expecting and hoping that our largest challenge today will be keeping mom from getting too bored sitting around all day.  

Hoping the day proves to be as boring as expected!  Thank you for your continued thoughts & prayers.  

-Elizabeth

Tuesday evening - 3/1/16

We are doing well here at the hospital.  I arrived back this afternoon and all of us took a walk down to the lobby and the Garden Atrium, which is a beautiful cafe space.  We read down there for a bit (they have a great lending library of books about cooking, gardening and food) and then came back to mom's room.  Mom was a bit sleepy by the time we got back, but she did really well.

Barry and Elizabeth went home for a bit.  Grandpa Terry and Mary Alice helped Daddy get caught up on some stuff around the house while Elizabeth slept, because she is headed back here for night duty again.  She and I are both able to take off from work for the rest of the week, so we are thankful that we'll be able to continue to be around.

Just after Elizabeth and Daddy left, Grammie Judy and Grandpa George surprised us with a visit at the hospital!  We had a nice visit with them, and are glad that they will be around for the next few days.  They were encouraged to see how well Kelly is doing... she is very much awake and herself. 

Thanks to Peter Booth for making an announcement at town meeting about why Kelly wasn't there.  I heard that he also shared this blog address, so welcome to all the Jericho folks who are now keeping tabs on how Kelly is doing.

She said she still isn't up for a lot of visitors, but she appreciates hearing about all the people who are sending their love.  

-Sarah

Tuesday noontime update

Hello All,

Mom's acute symptoms are doing a bit better today.  She is regaining the function in her right hand, probably mostly due to meds they are using to treat the swelling caused by whatever is wrong in her "stupid head" (Mom's phrase, not mine).  They still aren't sure what is going on, and probably won't know more until they do a biopsy.

And... it's looking like they have pushed that from tomorrow to Thursday.  More waiting.  Definitely not my favorite part of all of this.

As of right now, they are planning to keep her in the hospital until they can do that biopsy, but she's antsy to go home, so again... we'll see how it plays out over the next couple of days.

Thank you all for your care and concern!
-Elizabeth