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.