Making Soup

Grandmas for ages have known that it is the best thing to do when things aren't going well.  Whether you have a cold or a broken heart, making soup somehow helps.  Depending on your heritage it may have been chicken, or beef, or matzo ball, or minestrone.  We come from the heritage of the Living Learning center at UVM in the 70's, so we make Pistou soup - beans and veggies with fresh pesto.  Last night was a night to make soup.

Mom got the results of her MRI yesterday, and they were not encouraging.  As we had suspected from her worsening symptoms, the tumor has grown.  This suggests that the experimental Kaytruda drug isn't working.  Going forward, mom's chemo regime will stop Kaytruda and only continue with Avastin, a chemo drug that has been successfully blocking blood flow to the tumor area.

Kaytruda was the "next thing" to try, and now there isn't a next thing.  That is scary.

This week has been hard.  The bright spot I keep coming back to is that we are doing this as a family. I have an ever growing appreciation for those people who are the sole caregiver for someone who is sick.  It can feel overwhelming to care for mom, but I am so thankful that we can give each other breaks, and hugs and words of encouragement.  Thanks to all of you for being part of the extended family of relatives, church family, community members and friends who are sharing this load.  We love and appreciate all of you!

MRI

We're at the hospital for an MRI.   The doctor moved up the date a bit so we can see how the tumor is responding to the current treatment protocol.   Dr.  Thomas was expecting that the Kaytruda would be working by this point; the "worse before it gets better" would be over, and each treatment would be causing improvement.  Unfortunately,  that isn't what we're seeing.  

Instead, we're continuing to see decreasing function.  The aphasia (difficulty speaking and finding words) seems to be a bit worse.  Mom is also needing more help to move in and out of her wheelchair.

Although we are doing the scan today,  we won't know anything about the results until we meet with the doctor on Tuesday.  After that we'll have a bit more information and we'll know whether or not we are continuing with the Kaytruda.  Although we are anxious about this MRI,  we are looking forward to having more information so we can make the best decision about what to do next.

The Flying Wheelchair

As I said in the last post, Kaytruda is working, but it is causing a lot of mobility issues.  Kelly can't do stairs or walk independently, so we have been making some adjustments to accommodate those things.  However, we've been blessed with some technology that has made life much easier!

Just as stairs were starting to get hard, someone from church came over, and realized that a ramp would make it easier for mom to get into the house.  The next weekend, while mom and dad were at Dana Farber for an appointment, a team of people showed up with lumber, tools and willing hands.  By late afternoon, we had a beautiful ramp, which helped mom walk up to the house, and a few weeks later, for the wheelchair.



As walking has been getting harder, she has needed to start using a wheelchair more.  We've been gifted with a series of wheelchairs, first from the Casillis, then from the Greeleys, then from some neighbors.  This most recent wheelchair is a red motorized wheelchair. She loves how easy it makes it for her to move around the house, go down the driveway, or roll around the farmer's market.  Noah created a (sort of) portable ramp so we can roll the (very heavy) chair into his car in case mom needs to roll around somewhere other than home.  However, we keep reminding her to turn down the speed and watch where she is going.... it has inspired me to relearn the fiddle tune "The Flying Wheelchair" (the tune starts at 1:30 on the video).

We've also been gifted with a hospital bed that our neighbors posted on front porch forum just days before we made the decision that doing the stairs in the evening was getting too hard.  Daddy has been sleeping downstairs on the couch so that he can be nearby at night in case mom needs anything.

Having everyone home has been a help too.  Elizabeth is still holding down the fort, but is able to have a bit more backup now that Noah is home from England and I (Sarah) am off from teaching for the summer.  With more of us around, we are able to always have someone with mom to make sure she is able to safely move in and out of her wheelchair when she needs to.

It has been hard to adjust to all of the changes, but between the new equipment and the extra people, we are figuring out how to help mom keep doing all the things she loves to do.

Kaytruda

It seems that Kaytruda (the experimental drug we talked about in the last post) is working!  Kelly had a brain scan on Monday, and today she had an appointment with her doctor to find out the results. The tumor seems to be about the same size, or even a bit smaller.  We had been seeing some of the negative short term effects of Kaytruda, so it is great to know that they long term effects are exactly what we were hoping for.

Since she started Kaytruda, Kelly has been having a harder time moving around. When Kaytruda is working, it often causes "pseudoprogression", in other words, it makes it seem like the tumor is getting worse, even if it isn't.  In fact, it is just the Kaytruda doing its job of attacking the tumor.  This positive brain scan confirms that "pseudoprogression" is why Kelly has been having a harder time with mobility.

Last month, Kelly's mobility was bad enough that she and the doctors decided to skip a dosage of Kaytruda until this scan, just to make sure it was working before we continued.  Since it is working, she went right from her doctor's appointment this morning to the infusion lab, where they gave her the next dose of Kaytruda this afternoon.

Of course, if you've been at the hospital most of the day getting good news and getting treatments, it's important to get a little snack before you go home... and the hospital has delicious tiramisu!

Treatment Update

Kelly is still doing well, but the last scan showed some tumor growth.  We promised that no news was good news, so we realized it was time to update all of you and let you know.  To some extent, this was expected.  The plan of action all along has been that we will use a given treatment until it is no longer effective, and then try the next thing.

The next thing sounds like it may be a chemo drug that specifically works with Kelly's immune system to attack the cancer.  This is a fairly new treatment that hasn't yet been used on large numbers of people.  So, if this ends up being the best option for her, it will be overseen by Dana-Farber in Boston.  The bad news is that because it is an experimental drug, insurance wasn't going to pay for it.  However, the good news is that we just got word today that even if she doesn't get into the study, the company testing the drug will still sponsor the treatment.  Basically, even if she isn't in the official study, they still want as much anecdotal evidence as possible of this drug's effectiveness, and we are all hoping that mom can be one of their success stories!

Kelly and Barry will be headed to Dana-Farber in the next few weeks to get more details about this treatment and have mom undergo initial screening to see if she can be part of the official study.

In the mean time, life is chugging along as usual.  Between chemo and other medications, mom is napping a lot, but has been finding that getting outside still gives her a lot of energy, so she has been doing that as much as possible.  The PT has been telling her that being active and doing as much as she can is really the best physical therapy, so she is working hard to stay active and keep strength and dexterity in both her hands.  Barry is keeping busy with engineering projects at work and at home, and of course being a huge support for mom, whether it is taking her out to dinner or going with her to appointments.  Elizabeth is the daytime chauffeur and medication manager.  She has also been taking over some of the paperwork aspects of farmer's market and is treating us all to her excellent cooking.  I'm enjoying living at home again, but the family keeps saying they can't remember what my face looks like because between teaching in Richford, dancing a lot, and fiddling, I'm hardly ever home.  Ben is also at home and has almost completed his first full year working at Engelberth Construction.  Last weekend he felled some trees in our woods, and this weekend he is in Potsdam visiting the lovely Melanie Cockrell.  Noah is studying abroad in London (along with the lovely Aliza Kenney), and right now they are on a weekend trip to Dublin.

It is discouraging to see that the tumor has resumed its growth, but we are hopeful that this new drug will be effective.  We are so thankful that this drug is under development and available for Kelly.  Look for more updates as we get more information and details about what next steps will look like.

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.