What We Know

She did it!  She got that boy graduated and celebrated him in style on Saturday.  And yesterday she had a full and active Mothers' Day.  She opened her iPad (finally!  Esphyr has been waiting and waiting, but Mom insisted we wait) and the kids were happy to give tutorials.  Then we went out into the beautiful day and Mom joined in the Frisbee game (with Dad spotting).  She was amazing at catching for only using one eye.  (She's still having the double vision, so she's been using her painter's tape patch, which is a cheerful blue (see above).  I love it.)  Then we grilled out and and ate out under the pine trees.  Her appetite is good-- she enjoyed the burger and the sweet potato fries.  :)

Treatments should start this week.  She is opting for the longer course of radiation (five to six weeks) because it has a better chance of being more effective both in the short and long term.  Dr. Breneman and Dr. Morris decided not to do the chemo concurrently, so that will start after the radiation.  Dr. Breneman said that yes, of course, she can take a break for the wedding.  (Allie & Red wed June 14th in Virginia!)

One thing we learned is that there may or may not be tumor cells in the spinal fluid.  There were no cells present in the spinal tap (nor in the spinal scan, which would not show the fluid but shows that there are no spinal tumors), but there were protein levels that indicated that there might be.  At our last visit on Tuesday, May 6th, Dr. Breneman explained that the protein could be elevated because of contact with the known tumors.  This was encouraging to be because I had thought that it was a given that there were tumor cells in the spinal fluid.

So that's the latest.  Sorry I have not been keeping up as well as I should.  This is the end of my semester, so I have been grading many essays and answering lots of emails.  But I will finish up this week and hopefully keep you better informed.  Thanks all of you for your kind thoughts and words.  They lift us all but especially Mom.  As we were leaving Bloomington, Dad and Mom started singing "Cat's Cradle."  I just sat in the back, listening and thinking.  How lucky we all are.  All of us.

Love and gratitude always,
jk

Recurrence and Laughter

Dear Friends and Family,

Mom's MRI last week showed new tumor growth (three) in the cerebellum area.  This explains the pain she's been having.  Of course, we knew that it was very likely this would happen, we were not especially happy to hear the news.  Yesterday she had a full spinal MRI to determine whether there are any tumors there.  The results of that scan will go to tumor board today, and the board will recommend a course of treatment.  Then, Mom will decide whether to accept their recommendations.

I admit that I felt pretty flattened Friday and Saturday after the news.  But Sunday was a nice day; we spent most of it with Mom and Dad, and she is laughing a lot and getting out-- we walked half a mile in the gorgeousness of spring.  In her words, "I don't want to dwell on it."  It being the cancer of course.  On our trip yesterday, we just marveled at the red buds and new leaves and the amazingness of spring.  It was a great way to celebrate Earth Day (minus the driving and gas-burning, I suppose).  She listened with the kids to Roald Dahl audio books, and again laughed a lot at Dahl's brilliant sardonic wit.

So think of her, as I know you do, but when you do, laugh.  Or at least smile.  :)  She is.

We'll let you know what the board says.

Cheers,
jk

News from Dr. Breneman's Visit

Hello all,

The visit with Dr. Breneman Tuesday was reassuring if not entirely clarifying.  Basically, he stressed the main point: no tumor is recurring, "the scans are clear."  That's always good to hear.  He also said that the Trental did seem to do its job, at least in the cerebellum.  Swelling was better there but not in the frontal lobe.  The swelling in the frontal lobe was probably caused by her 2010 radiation, he thinks.  He also said there is gliosis, or scarring, there as well.  For this, he recommended trying Memantine, a drug that has been typically used to treat Alzheimer's patients but has also recently proved effective for people with brain injuries due to radiation such as Mom's.  So she agreed to try that.

As for the nausea, it has subsided somewhat since going off the Trental.  Dr. Breneman referred Mom to an endocrinologist to determine whether the thyroid and her hormone levels might be contributing to some of her struggles (extreme fatigue, for example).  He said they might need some "tweaking." So that will be on the horizon.

He also suggested using a cane until her balance improves.  She was comfortable with that, and it does seem like a good idea, at least for now.  As part of the exam, Dr. Breneman had her walk across the room, and it was difficult for her.  She needs props, as they say in yoga.  And in yoga, the guiding principal is to honor your body.  It is different every day.  So she is honoring her body by modifying according to the needs of the day.

Dad has been working from home most of the week, so that was nice.  And Mom got to visit with her sister Jane yesterday.  I am looking forward to sneaking in a visit sometime today or tomorrow.  I always love to see her.

Thanks for all your kind thoughts and words.  March is almost here!  That's something to celebrate.

Cheers,
jk

Rough Week, Better Weekend

Hello friendly friends,

Just wanted to let you know that last week was rough.  After being intolerably sick while taking the Trental, the doctor OK'ed going off of it for two weeks to see if that was the cause of the nausea.  Well, the nausea seemed to be the same or even a little worse after stopping the Trental, which was discouraging.  Plus, Mom didn't seem to even want to eat or be up off the couch much (can you blame her?) because she was feeling so sick.  It was to the point where it was beginning to be cause for alarm.

Thankfully, Saturday and Sunday were much better.  She ate a little more and kept it all down (more than a small victory!) and perked up enough to actually have dinner at the table.  Another victory.  Emeka and I had a couple of events to attend, and I was worried it might be too much for them to keep the kids, but if anything it seems to have had a positive effect.  The power of grandkids.  I was saying something to that effect, something like: "You guys worked your magic," and Esphyr's head jerked around to look at me with eyebrows raised, her voice rising too: "You mean we have magic inside us?"  Yes, my dear.  That is what I mean.  Kid Power-- learned it from a certain clown I know.

So I began the weekend near despair and am coming out of it feeling a little encouraged, hoping today is another good one for Mama Rose and that tomorrow Dr. Brenneman will have some useful piece of information for us.  I'll let you know what he has to say.

Happy last week of February,
jk

PS Mom has started to get some fun mail.  Thanks to the senders!  It really does brighten her day.

Steady As She Goes / Send Joy

Hello everyone,

Hope this post finds you warm and well in this frozen wonderland (as in, I wonder if spring will come this year?  I know it always does, but what if...?).   Just to give you the latest on Mom, she is doing okay.  And by okay, I mean, everything seems medically stable, she is able to keep down the two Trentals per day (Dr. Warnick okay'ed reducing the dose from three to two), and the Zofran seems to be making the nausea bearable if not imperceptible.  So all of that's the good news.  It's a delicate balance.

And speaking of delicate balance, Mom's balance has been a bit of a challenge of late.  If you have seen her recently, you might have noticed her being a little wobbly.  That is fairly new, and she says the Zofran makes her dizzy, so that could be the cause.  (A big part of my learning through this whole process is that treatments aren't always a treat; rather, they are often the cause of their own host of anti-treats.)  She is also really tired, and so even when she decides to go out and do something, she often loses steam before making it out the door.  So as I was lying in bed last night mulling this over, I thought maybe, if you are so inclined, you could send her some good old-fashioned snail mail.  This blog is great for me because I get so much good feedback from it, but she has not been able to use the computer much (or at all) lately, so a round of cards, postcards, letters might be in order.  She's gotten so much good mail throughout this ordeal, and she really appreciates every card and letter.  She shows me almost every piece of mail she gets with an air of wonder, like, "Can you believe this person thought of me?"

With all this crazy weather, I know it's been hard for everyone to get out.  So maybe we can write each other.  If you need her address, please let me know and I'll get it to you.  Tell her how YOU are doing-- what's new with you?

Thanks so much-- for reading, for caring, for supporting, for being part of this.

Love,
jk

Doc Says, "Much Better!"

The doctor visit in Cincinnati Wednesday went well.  The doctors said Mom was doing "much better" this time compared to last.  They ruled out necrosis and small strokes and decided that the frontal lobe issues they were noticing in the MRIs are just caused by a little swelling.  They think this is due to Mom's 2010 radiation.  So they gave her a drug to help with that, which is the good news.  The bad news is: it's very nauseating. So Mom and Dad are trying to work on a system that helps that.  So far, it's been a little rough.  :(  But they're trying some anti-nausea meds (Zofran) to combat it.

She's been hunkered down resting these past two days because of the cold.  We're on our way up for a visit!

Hugs to everyone and stay warm,
jk

Good Times in Dugan Hollow

Dear Readers,

Please forgive my lack of updates-- we have just been having too much fun!  Since last I wrote, Christmas has happened, of course, a zip line was installed (yes, Mom tried it out-- twice!), we rang in a New Year (Mom and Dad sponsored a date night for us and kept our kids), several birthdays were celebrated, some multiple times, an anniversary happened (more date night time sponsored by the grandparents), and a Cats victory over Tennessee was closely observed (Mom and I watched from the comfort of the cozy basement while the rest of the troops actually made the pilgrimage to Rupp Arena).  Mom did not miss a moment of the game and chided the Cats for their lackluster "D" during the first half.  :)  After the games (we watched a little of the Duke/No. Carolina St. showdown, too), we made blueberry pie together from berries we'd picked and frozen last summer.  Yum!

So yes, things are good.  There are some small developments-- a new medicine, which requires food to be taken (learned that the hard way), a doctor visit coming up tomorrow-- but mostly just living life and resting when necessary.  I will post a new update after the appointment tomorrow.  As always, thanks for reading, thanks for caring, stay safe, stay warm.

Much love,
Jill