March Madness and Mucus Mundaneness

Having lived in Reno more than half my life, and having a Master’s Degree from the University of Nevada, I have become a Nevada Wolf Pack fan (while still being loyal to you, Ilinois). I especially love men’s basketball from 4 years of watching Big 10 basketball at Illinois. And this year, Nevada is having great success so far in the NCAA tournament, pulling two close upsets coming from behind in the first two games.

The first game was against University of Texas, which was a family rivalry with my sister Sue’s family because her two kids, Ellie and David, graduated from Texas.

photo credit Houston Chronicle

The Nevada Texas game was close, ending in overtime after Nevada came back from a 14-point deficit, with Nevada winning 87-83, Andy’s cousin Ellie called him after the game. When games are so close it’s too bad a team has to lose.

In the second round they played Cincinnati. I don’t have any relatives who attended that school. But again, Nevada came back from being down 22-points with 11 minutes remaining to win 75-73. Another close game – too bad there had to be a loser.

photo credit USA Today

The third round game will be another family rivalry – my dad and brother both went to Loyola. They won their first two games on comebacks too, and both with end-of-game winning shots.

photo credit USA Today

My dad will watch the game with us. He has lived in Reno almost as long as me and he is a Wolf Pack fan, but still loyal to his alma mater. So he says he will win no matter what. But he said he will cheer for Loyola some.

My loyalties were tested like that in 2005, when the number one ranked University of Illinois beat Nevada in the second round 71-59. I actually had to go with Illinois on that one – undergad university loyalty is stronger than grad school loyalty.

All this is great distraction from my discomfort with my mucus problem that no one can figure out. I am still spending most of the day trying to get cleared out And it is quite mundane to do the cough assist, suction, cough assist, suction, cough assist, suction, then deep suction, the cough assist routine again. But as Stephen Hawking said, “Remember to look up at the stars and not down at your feet.” I will watch basketball stars and wish to the stars for a cure for my mucus problem, and a cure for ALS.

January blues, February hopes

What is it about the month of January that is depressing? So many of my friends with ALS wrote about depression last month. There was even a widely shared post about the choice of death or divorce – a man in the United States who decided to get a tracheotomy rather than dying and his wife divorced him after that because of the burden of care.

I have had my own pity party because of the post nasal drip and drooling and mucous that are still plaguing me. My neurologist at UCSF said it is not an ALS problem. She has not seen it before. I went to an ENT in Reno and a CT scan of my sinuses was clear. But now I have an expitided referral to the UCSF ENT department (we will see how they define expedited). The next step after, if needed, will be my Gastroenterologist and the earliest appointment I could get is April 4.

Let me tell you what this has evolved to – I get bad sinus headaches to the point of bad eye pressure and sometimes even ear aches. I have found that using Mucinex every 4 hours followed by cough assist and suction sometime in between can usually keep things moving. I also try to stay upright – standing or sitting to facilitate gravity assisted movement through esophagus. It takes a lot of time to manage and makes it hard to have plans away from home. But if this is my very own ALS journey (and it obviously is) I will have to readjust my expectations and figure out how to be happy with this.

It reminds me of my ALS diagnosis saga – every new antibiotic or doctors appointment brings hope that things will be better. And every failure is depressing like the lack of finding problems was during the “Please anything but ALS” phase.

But I have read beautiful memoirs by people with cancer (When Breath Becomes Air by Paul Kalanithi and The Bright Hour: A Memoir of Living and Dying by Nina Riggs). Both described their lives with cancer and it sounds in many ways worse than ALS. Although neither book dwelled on the difficult or painful parts, they were mentioned. I guess the only easy way to die is suddenly. One happy outcome from those two books is that Paul’s wife and Nina’s husband are now in love.

So I am challenging myself to find a happy outcome. I can plan on getting help soon at UCSF and at my Gastroenterologist in April. And I can fake it until I make it or until it is over. I am lucky that I am not aspirating this thin drainage. I am lucky it is not affecting my breathing, although I often can’t make through the night with my bipap because of too much mucous in my mouth. And I am lucky to be able to still use my hands and arms and legs.

Because I can still use my hands and arms, Stan and I decided to take a Community Education American Sign Language (ASL) class. It is frustrating for Stan when I do charades not very well so our communication has been difficult. Plus if we use my phone to navigate, my voice is the same as the GPS lady who says, “Take the second left”. We had the first class and it was fun with a great teacher. It was overwhelming at the beginning but with practice it became easier. Finger spelling has already helped us. Once when Stan was leaving and I had some mail to go out, he asked where it needed to dropped and I finger spelled our mailbox. That saved me from having to run to get phone or Boogie Board or paper and pen to write. Fingerspelling has also been helpful riding in the car. We were also told that practicing fingerspelling while driving or riding in a car with license plates and signs would be a great way to start. We have a lot of online homework, but it is fun. I love that it is a whole body language and I have always loved learning languages.

Other things keeping us busy are Jonika and Ollie visiting until 2/14. They are a joy to have with us.

Jonika and I took Ollie to the playground at Idlewild. One of the play structures had the American Sign Language alphabet!

A Hawaii boy riding a whale!
A Hawaii boy with a Nevada light saber!

Jonika’s best friend Lyndi came over with her same aged son Landon.

It was so nice to see Lyndi again after so many years.

We also had a nice visit with Stan’s mother, Sharon, and Jonika’s mother, Terry. We enjoyed a meal at Naan and Kabob and relaxing visits at our house.

And more Ollie cuteness:

Last Friday we left as soon as Andy got home from school, and drove to Sacramento’s Golden 1 Center for the Kings versus Warriors NBA game. We met my best friend Erika and her kids there. It was very loud so Ollie had ear protection.

Photo by Erika Gotsch Peters
Lazy eyed me with my best friend! (photo by Erika)
Andy with his buddies Maddie and David
It was exciting to see so many NBA stars playing a good game
Photo by Erika Gotsch Peters

Jonika and Ollie were ready to leave after the third quarter so Erika and I left with them and went back to Erika’s house in Eldorado Hills. It meant we missed the fourth quarter where Kevin Durant took over and brought the Warriors to victory. But it gave us more time to visit with Erika and Stan stayed and had fun with the older kids.

The next morning we had a nice breakfast and more fun with Ollie.

Photo by Erika Gotsch Peters

Then we drove to El Cerrito to pick up Andy’s viola bow which was being rehaired. We stayed in Oakland on the estuary. Saturday night we drove across the Bay Bridge and across San Francisco to cousin Julie’s. Julie had not seen Andy since he was Ollie’s age and she hadn’t seen Jonika since she was a teenage highland dancer. Julie’s grandmother was Stan’s great grandfather’s little sister and they were from Scotland. We had a wonderful visit.

Julie was very close to Stan’s grandparents Mac and Olive, and she loved, as we all do, that Oliver was named after Olive.

On Sunday morning we met Jonika’s friend Rob for brunch in Oakland. Rob is Jonika’s mother’s best friend’s son so they have been friends since childhood.

Then we drove home, listening to the first quarter of the Super Bowl on the way.

And so began February, with good distractions from my illness, and hopes that things will soon get better with my sinus problem.

Radicava Round Two,  November and December travel

I started Radicava Round Two on Friday. Our wonderful home nurse Pam supervised Stan doing the needle poke. Now he is signed off and can do it unsupervised. This time I will do 5 days on, 2 days off, and 5 days on, then 16 days off. I will try to get my swimming in on the off days because the needle stays in for the 5 days and it can’t get wet. I did go to aqua fitness three times last week and it felt great to be back. I had to keep my napkin in my mouth to breathe through my nose but it worked. Still trying Zyrtac for my allergies.  My doctor at UCSF just recommended papaya enzymes to thin mucous so it won’t get stuck in the back of my mouth,  available through Amazon, so I ordered them and they will arrive Tuesday. I was using Pineapple/papaya Enzymes from Trader Joe’s and that worked but then I noticed a pineapple allergy. It’s nice to know I can get papaya alone.

Saturday was Stan’s sister Terry’s birthday. She came by and hung out with us in the afternoon. She helped my allergy situation by helping to change the furnace filter. She also dusted the ceiling fan in our room. And she offered to come do deep cleaning when we are traveling in the next 2 months.

Terry unwrapping the furnace filter and showing off her birthday present!

Today, Sunday is my sister Beth’s birthday. We will be with her on Thanksgiving. My Radicava schedule worked out nicely. My 5th day will be Tuesday and I may be able to go to late afternoon aqua. Then for Wednesday and Thanksgiving I don’t have to infuse. 

It also works out for my trip to Boston for the ALS/MND International Symposium. We leave Dec. 6 and return the following week a few days before Round 3.

Speaking of that conference, all ALS patients and caregivers reading this, let me know if you have specific questions for the researchers. I will do my best to get them answered. You can comment on this blog or if you came to it through Facebook or Twitter you can comment there.

I plan to make sure they know it’s not just mice and test tubes, and ask about future treatments being accesible to tube fed patients as well as patients with lower breathing  scores and lower ALSFRS and ALSFRS-R scores. And also the non plecebo trials going on at Duke should become the norm. No ALS patient should have to take a placebo. There are good records of historical controls that can be used.

Birthday Bash for Stan

My husband Stan said all he wanted for his birthday was a party. I agreed, but knew it would be a big undertaking with my ALS and fatigue. We planned it for Saturday April 29, the day before his 61st birthday.

Invitations were easy, through Facebook events and emails, plus some others that Stan contacted.

We spent the week before the party working on decluttering the house. I had just had a food delivery, so we filled my 5 boxes with giveaways that Big Brothers Big Sisters picked up on Friday. We also tracked down some extra folding chairs and two card tables. I worked on a playlist, starting with Amazon Prime Classic Rock playlists, then adding some more modern music. It was 5 hours long and we played it on shuffle and repeat so it continued throughout the party. I love Amazon Prime Music! Oh, and Stan bought a new stereo that can connect to my phone so we were able to use good speakers.

Our friends Erika and Paul offered to come up early from Sacramento to help us get ready. I am so grateful – there is no way I could have done it alone.

I went to Wal-Mart Saturday morning and picked up a helium balloon kit, a Happy Birthday sign, a couple of inexpensive beach towels to cut and use as bench covers for our picnic tables, a couple of orange plastic tablecloths, and six inexpensive brightly colored chairs.

When I returned from Wal-Mart, Stan was leaving for Costco for food and drinks for the party. My dad came over and helped with party prep for a little while. When Paul and Erika arrived with their daughter and niece, I was able to make a decorating list and a honey do list for some things Stan ran out of time to do. We had some things from previous parties: an inflatable pepper to hang on the front porch,

Stan taking down the pepper after the party

an inflatable float plane,

Adriana and Phil, under the inflated biplane

a colorful cardboard parrot for the wall, table cloths for picnic tables, and paper lanterns for the trees.

Amanda and Tony with one of the tree lanterns
Ian and Hunza, with Chuck in the background, and another paper lantern

Our younger friends, Erika and Paul worked so fast. Andy and Maddie and Jacqueline helped with the decorating too, as well as had some fun.

We got everything ready in time for the party.

I was the official photographer, with my new camera. That is a job that can be done without speaking, and it was fun.

Photo credit Joyce Zodiaco

I will let the pictures tell the story. What was significant about the party is that everyone was smiling.

Another Tony
Mike, Spencer, and Jody
Karen and Sam
Mark, John, and Sue
Donna and John
Joannie, with Mobi behind her
Brothers Ian and Greg with their sons Adi and Calvin

My dad

Erika and Alice, with Paul walking by 
Neighbors old and new, all live or lived in the house next door and we love them all: Vince, Joyce, Ezra, and, Hella
Brian, John, and Dianne
Chuck was a big help cooking
Rod and Sam
Calvin and Adi enjoyed the trampline
Lots of help inside too
Folks enjoying food sitting around Mary who is on modified bedrest in her pregnancy with twins.
Debra and Haley
Brian and Catherine
Donna, Vince, Phil, Joyce, Adriana
Stan, Pete, John
Mary plus two inside, Haley, Drew, Rita
Joannie and Tim, Squaw Valley ski instructor who missed some spots in his sun screen application that day 
Drew, Stan, and Mobi
Stan and Jay
Spencer and Stan 
Thien and John
Heidi and Rod, portrait in blue
Jim and Pete
Peggie and Jim
Ian and Adi
Calvin, boy with balloon and cookie
Hunza with Adi and Calvin
John and Thien
The birthday boy
Heidi offered to take my photo, because photographers are often not in the pictures
Stan explaing something to Tony and Sam
The M corner boys (M because they live in the three houses surrounding the corner of  two streets that start with the letter M.)

Around 9 pm I was quite tired and sad and I thank Thien for listening to me then. We decided I better go to bed. As soon as I was alone, I began to cry, grieving because I could no longer stay up until the party was over. I was also over tired, which was true of my teary New Year’s Eve in the Galapagos. Andy came in to comfort me and listened to my writing on my Boogie Board. He asked if I wanted Dad to come in, but I didn’t want to take him away from the party. I explained to Andy that I have to grieve, and I promised I would be better in the morning.

The next morning I got up early to take my meds and saw this in the backyard.

I had forgotten that the lanterns light up.

We woke Stan up on his birthday by bouncing a balloon like a beach ball over his bed. 

Stan, Andy, and Chuck went dirt bike riding. Then we met Catherine and Brian for our semi-annual Stan’s Birthday at Murrietas.

All in all, it was a great birthday for my wonderful caretaker who puts me first despite his pain.