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