Actual Hospice

In the last post I said hospice isn't necessarily that bad.  It's true that hospice doesn't have to be, but at this point it is.

Basically, since I wrote that post on Wednesday, mom has been in a lot more pain.  She has some pressure in her brain and has been very constipated, both of which are painful. She hasn't been talking much except to say "please, please, please" or "daddy, daddy, daddy" when she is in pain (because we call Barry "daddy", that's what she's been calling him lately too).  We got permission this morning to put mom on a lot more pain meds, and someone from the hospital pharmacy is dropping off a pain pump to one of the VNA nurses, and the nurse will bring it to us this evening.  People who don't even know us are going out of their way to help out.

The plan as of now is that she'll be moving to Respite House on Monday.  We are looking forward to having other people worrying about meds and transfers and keeping her comfortable, so we can just enjoy being with her.  

They have warned us that once they put her on enough meds to really make her comfortable, the part of her brain that is fighting may relax a bit.  In other words, there is a chance that she could die in the next few days.  As sad as it is, it is so hard to see her in pain.  The priority is keeping her comfortable, and if that means she isn't struggling and fighting to stay alive, that's okay.

Hospice at Home

Kelly had her last dose of chemo last Tuesday.  She, daddy, and the doctors decided that even the Avastin, which has been working since early on in her treatment, isn't doing much good any more.  The priority now is to reduce symptoms as much as possible.

Hospice is a scary word, because for many people, it means intense medications to reduce intense pain.  Thankfully, that isn't what it means for Kelly.  She is taking some pain medication, but "hospice" is just the term for when the job of the medical community shifts from treating the disease to treating the symptoms.  Much is continuing on in the same way it has been, but without the need to go to the hospital for infusion every few weeks.  The "hospice" designation also means that we have more support from the VNA.

VNA has been great. They have been working with us and making sure PT, OT and other services can come to the house.  They've been making sure we have all the equipment we need to care for mom in the best way possible.  They've also been coming to the house to help mom with bathing, teach us how to use equipment, and generally check in.

On Monday, one of the VNA nurses came to teach us how to administer insulin.  A week ago, mom's bloodwork showed that she has very high blood sugar.  This isn't too surprising, since high blood sugar is often a side effect of long-term high-dose steroids.  It also explains some of why she has been so sleepy recently.  We got a glucometer (the thing diabetics use to test their blood sugar levels), and some high readings over the weekend mean that mom is going to need to start taking insulin to regulate her blood sugar.

We are learning about many things we never wanted to know about; transfers (the fancy medical term for picking up and moving mom), dosages and side effects of various medications, the support available through the VNA.

We are also being reminded of many good things.  Noah and Elizabeth have so much patience when mom asks something for the 15th time.  Mom still calls dad handsome and can't wait for him to be home from work.  Ben gives really good hugs.  Our community is there to do a load of laundry, or drop by with a bag of apples.  Our extended family takes time to come visit, hold mom's hand and distract her with anecdotes and old family photos.

We're finding humor in the strangest places.  We're crying a lot.  We're hugging a lot.  We're taking turns being tired.  We're taking turns being strong.  We're taking turns being patient.

We're taking it a day at a time.

Best Intentions

Kelly always assumes best intentions.  She says it is why she and daddy have such a supportive and harmonious marriage.  It is how she chooses a response when something happens that could be offensive.  I can remember so many conversations where she has thought of all sorts of possibilities where thing could be just a misunderstanding or mistake, because clearly there wouldn't be malicious intent.  I have never learned how to navigate conflict with mom because there never was any.  She assumes best intentions and everything rolls off her back.



Kelly is selfless.  She has spent her entire adult life being a mother, and I don't know of a more selfless task.  Mothering is already a full time job, multiply by 4 and add on homeschooling, and I don't know if she has had a moment of "me time" in the last 28 years.  On top of that she has served her community by running the farmers' market, helping at church, nannying kids in town and so much more.




Kelly is unflaggingly positive and appreciative.  I suppose this is largely a symptom of assuming best intentions.  But it is also a symptom of noticing what is good.  The response to anything beautiful is to notice it, whether it is good food, or kind words, or lovely weather. The response to a problem is always, "Well, how will we move forward?"  Even in this whole process of dealing with brain cancer, mom has continued to look at the bright side (see Barry's post "Polyanna has a brain tumor").


The tumor doesn't have Kelly's beautiful spirit.  It sometimes assumes that if people can't make sense of her words, it's because they aren't trying.  It sometimes grabs at other peoples' food because it is worried she won't get any of her own.  It sometimes thinks that if we don't immediately do what it says it is because we don't love her.

But, we do love her so much.  And when the tumor says those things, we have to remember that it isn't her.  When she is talking, it is easy to know, because it is consistent with who she has been the last 57 years of her life.

"Thank you honey," "That foot rub feels so good,"  "That's beautiful," "I'm so glad you're here," "You take such good care of me,"  "This is delicious," "I love you".

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!