Steady as She Goes!

  For several reasons that will become clear later, I have titled this blog post with the old order to a ship's Helmsman "Steady as she goes!".  You may notice that this ship is still in rough sea, but she is nicely making way.  So it is with Kelly.

We got a good report from the MRI on Tuesday Nov 29th.  The tumor has not grown since the August checkpoint.  So the chemo is working to keep the tumor in check.  For now, then, we are concentrating on dealing with all the effects of the tumor and side effects of the medications that help with the treatment.

One is that Kelly has been on a large dose of a steroid medication.  This has lots of unpleasant side effects like weakness and weight gain and skin problems, so now that the chemo is helping with the actual brain tissue swelling near the tumor, she is weaning herself off the steroid.  It's sort of like an addiction- the withdrawal has to be done slowly to allow her body time to adapt, and the side effects of the withdrawal are unpleasant.

The second is that the main side effect of the anti-seizure medication is that it makes her sleepy, or groggy, almost as if she were drunk.  If we are feeling uncharitable and she is being groggy and cranky, we call her Captain Jack, referring of course to Jack Sparrow, Johnny Depp's drunken pirate from the Disney Pirates of the Caribbean. So there we have the second nautical reference. If you think it might be lovely to be drunk all the time you have probably not tried it.  For Kelly, who loves to get some work done, especially out of doors, its very frustrating to be weakened by the steroids and then sent for a nap by the seizure medication.

And lastly, Kelly is working to gain back the function of her right hand and right leg and rebuild her strength.  Physical Therapy helps, but the nap attacks make that very difficult.

One final inside joke to close out our Helmsman theme.  Once upon a time, in a galaxy very nearby, there were a group of high school and college friends who had a car that was so big it was known as the Barge.  The Space Barge.  And in that group, among the others of that merry band of army-surplus-uniformed star fleet adventurers, was the Helmsman.  Yes, you guessed it- it was Kelly. Steady as she goes, indeed.

Avast there, cancer!

Kelly got a good report from the doctors on Friday.

She had an MRI that showed that the tumor has not spread since the last look we got at the end of August.  It has not shrunk like we had hoped, but the surrounding swelling has greatly reduced.  So the chemotherapy and the other medicines seem to be working!

This new chemo is an IV drug, so she has to go to the hospital once every two weeks to spend an hour or so hooked up to an IV.  The drug is called Avastin, and the name immediately made both Kelly and I think of "Avast there, matey".  Avast really does mean "stop", but talk-like-a-pirate day was way back in September, although I encouraged her to wear her pirate hat to the chemo appointments, I guess that was too goofy even for her.  I missed my chance when I accompanied her to her chemo appointment on Friday.

Pirates or no, we seem to be stopping the tumor.  Next step is to work on the side effects of the medicines while we play a waiting game for the full benefits of the previous radiation therapy.

Citizen of the Year

Kelly was honored by the Underhill United Church’s Old Fashioned Harvest Market as Citizen of the Year. When they contacted her to tell her she had been nominated, her first reaction was “who, me?”, but she didn’t want to make a big deal about it.

Many of you made a point of going to the parade to wave at Kelly riding in her cousins Jenny & Tim Chamberlain’s restored VW buggy.

So many of you know Kelly for exactly the reasons that she is being honored. She grew up here in Jericho, on Lafayette Drive. So all you Connors and Lehouillier and all from the old neighborhood have known her longer than I have. When she was old enough for kindergarten, Kelly’s parents, along with Dee Dee Jamison and a number of other parents started a co-operative kindergarten. It was called Saxon Hill School, and it is still going strong today.

Kelly’s mom, Lucy Wilcox, still lives in Jericho, and you might see her at the Old Mill craft shop, and selling her photos at craft fairs, including the one at the Harvest Market.

As a teenager, Kelly was active in 4-H, and got a first taste of Jericho politics and community service when she and other youth joined in the effort to preserve the Old Mill. Blair Williams is gone now, but you Historical Society folks remember that time I am sure.

Kelly has always worked in service to other people. Her broad education is another long story in itself, but while we were living in Richmond, she got her teaching degree from UVM, and student taught with Delia Clark at Founders School in Essex.

Elizabeth was born that December, and Sarah was born about two years later. As a mom of young ones, her kids came first. But Kelly always has gotten involved to help others. She helped other new moms as a trained leader and counselor in La Leche League. When Ben was on the way in 1993, we needed more room. Of course we wanted to return to our home town, so we moved from the wonderful Richmond community back to Skunk Hollow Road in Jericho. Ben and Noah were both born at home here in Jericho.

As a mom of 4 homeschooled kids, she helped teach and helped organize the numerous homeschool co-ops we were in. As a mom of 4 kids coming up through Mount Mansfield high school, she has been a band parent and a chorus parent. She served lasagna and ice cream on behalf of Academic Boosters, and has cooked immense amounts of food for cross-country runners and Nordic skiers.

Growing up Kelly attended St Pius church, then Jericho United Methodist Church; but her whole adult life, she has been active in the Jericho Congregational Church. When the kids were young, she taught Sunday school and helped in the Nursery. As the kids got older, we chaperoned Youth Group. She served on the Fellowship committee and has always helped with Chicken Pie supper. And she has been a member of the church choir. When our revered pastor Peter Anderson retired, Kelly was honored to serve on the church transition team to make sure that the church was even stronger than before as we made the transition to a new Senior Pastor, and was on the hiring committee that eventually brought David Coons here to pastor at Jericho.

When her youngest was preparing to go to college, she realized that she had worked her way out of her job as homeschool teacher. She and Elizabeth had been selling bread at the Underhill / Jericho Farmers’ Market. When the Market needed a market manager, Kelly put her extensive training and experience in gardening, permaculture, wild edibles, and local food systems to work, and stepped up to that job. She also worked as the manager of the Richmond Farmers Market, keeping both Markets humming for one very busy Summer. Now she is managing just the Jericho Farmers’ market.

I hope you’ll join me in honoring Kelly by “not making a big deal” about the way that she has consistently integrated public service into her life and work.

New Normal and New Chemo

Since Kelly has got back home at the end of August after her second seizure episode, we have finally settled in to a new normal.  She is on two strong medicines to prevent seizures and to try to bring down the swelling in her brain near the tumor.  So although she still has no pain in her bad arm or leg, and no headaches, she does feel "fuzzy" sometimes and still has "nap attacks" where she is just to tired to function.

Climbing stairs is a challenge and long walks are a challenge.  Grab bars help.

Elizabeth is helping her figure out how to time her medicine doses so that they work as they are supposed to, and make those fuzzy and sleepy times be at night or when she is napping anyhow.  Elizabeth has been very impressed with the care and attention of the hospital pharmacists to help with these questions.

Because the tumor had grown even with the ongoing chemo, we've decided to add a second chemo drug to her treatment.  This one works by hindering the creation of new blood vessels, so the tumor can't grow and can't cause more swelling.  That's exactly what we are trying to do.

Kelly is determined to do all the things, as usual, so we look forward to seeing you at Farmers Market and all around town.

Coming home Tuesday...

Kelly gets to come home Tuesday!

She has been at Fanny Allen working hard for a week now.  She has been working with an PT (physical therapist) and OT (occupational therapist).  They are making sure she has the strength and skills to be able to come back home and get around safely.  At this point, she can stand independently, walk with a cane, and even go up and down stairs, as long as there is a hand rail.

Since Fanny Allen is a rehab facility, we haven't had someone staying with her 24/7 like we did at Fletcher Allen.  She has been staying pretty busy with 3 hours of therapy a day, and plenty of naps, but she is getting antsy.  She isn't allowed to move around on her own at Fanny Allen, because they are worried about safety, and she misses being home. Daddy has been going over to have dinner with her most nights, and we stop by some, but she will be glad to be back with the family soon!

Mobility will still be a challenge when she comes home, so Dad is installing grab bars in a few key places so she can move around the house by herself.  She won't be able to go out into the woods by herself though, so that is disappointing.  So, if anyone has been wanting to learning from Kelly about wild edibles or permiculture, you should find a time to go take a walk or play in the garden with her, so she can get out and do what she loves!

She was also disappointed to miss farmers market and church last week, so for those of you that she knows through one of those settings, she's looking forward to seeing you there!

The leg is on the mend!

Kelly's leg is doing much better!  On Saturday morning she couldn't move it, but since Sunday she has had back much of her strength.  Still, they weren't allowing her to try standing or getting up on her own, and she had to have help to move to the wheelchair or use the bathroom, which was getting frustrating.  By Monday morning she was getting very antsy. So, we are glad that yesterday they were able to move her to Fanny Allen for inpatient rehab.  We are especially thankful because it can sometimes be difficult to get a spot there.

When they came to evaluate her for rehab, they were trying to make sure she doesn't have medical issues that will get in the way of rehab, and make sure she'll be ready to do the work necessary to get better.  As soon as the woman came in, mom started giving her the litany of lost function, all the things she could do with her right hand before this most recent seizure, and the necessity of getting around.  The lady kept saying "Yes, I hear you have goals.  I think you'll be a really good candidate for rehab".  I think she though mom was trying to convince her she'd be a good candidate.... nope, just being mom being herself....enthusiastic about everything, especially regaining mobility and independence!

She stayed at Fanny Allen last night, and had her first evaluation this morning.  During that evaluation, she was able to stand by herself, and even walk a little!  She will be working hard there... a total of 3 hours per day of rehab.  They said an average stay is 1-2 weeks.... so they'll get her back on her feet and moving, and then let her continue doing the work at home.  If she can already stand though, we're very optimistic about the progress she will make!

No news is good news (so unfortunately there is news)

Kelly was hospitalized again last night.  She experienced really bad nausea all day yesterday, because she just finished a round of chemo.  Yesterday evening she had twitching in her arm (which she has had before) and then in her face (which she hasn't had).   Dad gave her the emergency seizure meds that we have for her, and called the ambulance.  The twitching had subsided a bit by the time the EMTs arrived, but she wasn't able to keep down the second dose of emergency seizure medicine.  They transported her to the hospital at around 7:00 last night.  By midnight they had admitted her to the oncology floor.  Dad was able to go in the ambulance with her, and has been at the hospital all night.

It turns out she has a lot of inflammation and fluid around the tumor right now.  Because of this inflammation, the paralysis has spread from her right arm to her right leg as well.  We are hoping this is a good sign though- if the tumor is irritated, it may be because the chemo is doing a good job killing the cancer cells. 

They have put her on slightly more seizure medication and a lot more steroids.  They seem to be having a good effect.  Even in the 2 hours since I arrived at the hospital this morning, she seems to have a bit more strength in her right leg.  As of now, they are hoping that the steroids will continue to improve her right leg and they'll be able to send her home tomorrow (Sunday).  

She is awake and doing well, although she is a bit "fuzzy"....having a bit of trouble coming up with words at times.  This may be a symptom of all the medications she is on at the hospital.

We will keep everyone updated as we know more.  Thanks for caring, praying and being in her corner as we walk through this.

So far, So good.

Today was Kelly's follow up appointment with Dr. Thomas, the Neuro-Oncologist at UVM Medical Center.  Kelly has gotten two MRI scans, one about a month post-radiation, and now two months post-radiation.

Two important findings are that the tumor has NOT grown since radiation started, and we can see that the core of the tumor is dense, probably dead tissue.

We started this treatment with daily radiation plus a low dose chemo.  The chemo makes the tumor more

susceptible to the radiation, and the radiation makes the chemo more effective.  So as far as we can tell, Dr. Nelson, the Radiation Oncologist and his ray-gun operations team seem to have hit the spot, so to speak.

It's normal for the brain to take months to clear dead tissue, so we hope to see a slow collapse of the tumor mass as that happens.  We'll look again in two months to see exactly how that is going.

In the meantime, the whole area around the tumor is still irritated from the radiation and from the tumor itself.  This means that Kelly still has numbness and partial paralysis of her right arm and hand, and it often feels what she calls "cranky", when the muscles are stiff and twitchy.  That's a concern because we don't want to let that irritation and cranky twitchyness break out into another seizure.  So Kelly is taking steroids to treat the inflammation, and dealing with all the side effects of that, and taking anti-seizure medicines, and dealing with the side effects of that, too.

We are continuing the chemotherapy with the same oral drug as before.  Now she is on the full dose, taking it for 5 days, then "coasting" for 25.  We will continue that, probably for a year.  Kelly tolerates this drug well, and has not needed anti-nausea medication to go with the rest of her pharmacy.


Poor Kelly has lost most of her hair, but she rocks the head-scarf, even though she dislikes having to deal with it all the time.

Her right arm is still partially paralyzed, so she can't type.  Many of you have probably gotten texts or emails from her, she uses dictation software to send them, so beware the sound-alike and auto-correct errors!

She also has the fuzziness and fatigue that many chemo patients have.  They call it "Chemo-brain", and it frustrates her efforts to run the Farmers Market, and just keep life in order in general.  She is trying to get more sleep, but the steroids make it hard to sleep, and the backlog of work she wants to do, but can't, keep her up at night too.  Then she has frequent "nap attacks" when she just has to take a nap.  So that is frustrating.

So you praying people: Praise for progress.  Pray for continued healing.  Pray for patience; pray for peace.  Kelly says that she always feels that power, so keep it up.

We are trying to just do everything we would usually do, so we'll see you around soon.

Treatment Round 1

I’ve been trying to write a perfect blog post, and finally just gave up.  I'm giving you a quick overview of what's going on since obviously the perfect has been enemy of the good enough. What you are not hearing here is my long list of thank-yous and the long list of all the blessings that have come out of this.

I’m in my last week of six weeks of radiation!! I have been getting radiation every Monday – Friday, and my last day is May 11^th!

I've been tolerating the radiation really well with only minor side effects. I have had slight “sun burn” to the scalp. Then starting 3 ½ weeks ago I shed about two-thirds of my hair; but because I had a lot start with, I was able to get away with just a comb-over and headbands for a few weeks (channeling my late father with the comb-over). And now bandannas and scarves are making do. It's not bothering me much other than the fact that I need to leave time to fuss with my hair, which I've never had to do (my previous beauty routine was to wake up, run my fingers through it, flatten it down with water and let it be a crazy mess).

The fatigue that is common with this treatment kicked in much earlier than it did with the radiation I had for my breast cancer 2 years ago . So after the second week, I added naps to my day!  Usually short- 10 to 15 minutes- but they add up. So that is another hour or two out of the day.

The radiation is combined with a low dose of pill form chemotherapy to help the radiation be more effective. They had me on anti nausea medicine just in case, but I have not needed it. This makes me really hopeful that the higher dosage of chemo I'll be taking over the summer might not make me too awfully sick. Starting in June, I will have chemotherapy one week on, then 3 weeks off.  Again, it will be oral chemo so I just take a pill at home in the evening each day, but at a much higher dose.

The most constant and irritating side effect of the cancer is the loss of my right arm function caused by the swelling around the tumor and possibly damage done by the cancer itself.

I've gotten quite a bit of movement back in the last week or so, but functionally it doesn't really work . It is numb from the elbow down and doesn't know where it is in space, so I do it a lot of knocking things off counters and swiping papers off tables with my right arm. Oddly, although the muscles are weak from lack of use, if I can get something in my hand and close it, I can lift with that side. But it just forgets to hold cause it has no feedback... so then I drop things. So usually I just can't use it -- it's a very odd problem.

Generally I'm able to keep a sense of humor about it and appreciate how well it does work and how little I really am being affected by this whole brain tumor. But I have to admit in the last week or so the constant irritation of not being able to do things that I can normally do is definitely getting to me. If I am not intentional about keeping a good attitude, it is easy to start to become irritated and that just starts a downward spiral.

My actual treatment at the hospital is only about 15 minutes . But I usually leave the house around 7:30 and I'm not home till 11 because of appointments and waiting for rides and blood draws excetera excetera.  When I look around at what is not getting done here, I have to remind myself that just dealing with the cancer is a half time job!

-Kelly

Polyanna has a brain tumor

Everyone asks me “How is Kelly doing?”. And I mentally run through a few ways of answering that, but I settle on the Truth.  Physically, she is feeling fine, at least for now.  And her Spirit is so strong and positive.

For those of you not up on early-20^th-century childrens' literature, the title of this post refers to the 1913 novel by Eleanor H. Porter.  The book itself is so trite and didactic that I roll my eyes.  But here's the point: Polyanna was taught by her father that:

“... there is something about everything that you can be glad about, if you keep hunting long enough to find it.”

So Kelly says “It could have been worse- a tumor could have affected my ability to walk or talk or see or even to breathe!   Oh, yeah- Lord, it could have been better- it could have been my left hand. But I'll take it.”

And even more, we are all counting our blessings from the flood of support and prayers and errands and rides that have bouyed Kelly up and carried her along.  

“Oh, yes," nodded Pollyanna, emphatically. He [her father] said he felt better right away, that first day he thought to count 'em. He said if God took the trouble to tell us eight hundred times [in the Bible] to be glad and rejoice, He must want us to do it - SOME.”

And even more important, the main point of the story of Polyanna is that this attitude is contagious- the whole community can learn it.

“What men and women need is encouragement. Their natural resisting powers should be strengthened, not weakened…. Instead of always harping on a man’s faults,tell him of his virtues. Try to pull him out of his rut of bad habits. Hold up to him his better self, his REAL self that can dare and do and win out! … The influence of a beautiful, helpful, hopeful character is contagious, and may revolutionize a whole town…. People radiate what is in their minds and in their hearts. If a man feels kindly and obliging, his neighbors will feel that way, too, before long.But if he scolds and scowls and criticizes—his neighbors will return scowl for scowl, and add interest! … When you look for the bad, expecting it, you will get it. When you know you will find the good—you will get that…”
― Eleanor H. Porter, Pollyanna

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.....

=======================================================================

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