Busy weeks

Oh dear, it has been almost two weeks.

Saturday--I think I have been one notch more tired after my second chemo but that has not kept us from doing things.  Monday before chemo 2, Jenny Kiel, a Hamline colleague, came over to do a yoga session with both Sue and me.  She had offered to bring a pot pie and I asked for a yoga lesson instead.  She had a cancer and yoga book and we went through several poses.  It felt good and relaxing.  Lucky for me she was willing to come back again and yesterday we went through a routine which will make it easier for me to start doing yoga as one of the tools in my arsenal.  Thanks Jenny.

The first reading at MJTC was a unique experience.  After the read through the cast talked about their characters, the interactions between them and the possible meaning of the play.  The director then asked us and the other guests if we had questions or thoughts about the play and/or characters.  It will be fascinating to see what paths they take in developing the final show.  We will try to go to a tech week rehearsal--will keep you posted. Many of you may recognize Linda Kelsey from the Lou Grant TV show.  She lives here now and is playing an 80 year old mother in this play.

Chemo took six hours this time, we closed the clinic down.  I read a little, listened to music, slept, told Sue how bored I was, and watched a video on my phone.  Hopefully this week it will be closer to 5 hours than 6.  Still a long time.  The docs were happy that the first round went well with tolerable side effects.  They said that could be a determinant of what is to come.  The second round side effects were much the same.  The cold sensitivity was a bit stronger and lasted longer, also got to my lips and tongue this time.  It fades over time and is finally gone this time.  It is hard to wait between chemo sessions so I just have to keep imagining my body helping the chemo work during the in-between times. We have started taking a look at alternative treatments in case they are needed down the road.  Talked with a doc in Seattle about sending little micro beads with radiation into the blood supply of the liver tumors.  Waiting to talk to Dr Dan about it and the timing of considering alternatives.  Won't do anything until after the CT scan at the end of February to see how the current treatment is working.  Have a contact in AZ to talk to as well.

Sunday--What a difference a day makes.  Lots more energy today.  Sometimes I guess everything just needs a break--mind and body.  Yesterday when Kim and Lin came for lunch we watched a tv show and I promptly fell asleep for two hours.  They left sometime during the nap--fine hostess I turned out to be.

Had lunch at Rick and Nita's today--Chinese take out so we could all find foods that we would like to eat.  I never know from one meal to the next what is going to sound good.  Today it was shrimp and vegetables and cashew chicken, but it wasn't the kind of cashew chicken I was expecting so stuck with the shrimp.  In Myanmar Sue and I ordered cashew chicken for four days straight and every other day that we could along our trip.  We were teased about it and said we were going to write a book about cashew chicken throughout Myanmar.

Had a busy couple of weeks, Gwen was here from New Mexico to visit.  She was my vice principal when I started teaching in Burnsville.  We have been friends ever since and she has been an inspiration to me in many, many ways.  To get my PhD, to keep going in my career, to keep putting one step in front of the other when things are tough.  We had a nice relaxed visit and threw in a women's basketball game, we won, and a trip to the movies to see Spotlight.  Very good, but staggering in the extent of the child abuse and cover up in the Catholic church.  Big news, we took the Christmas tree down, organized all our decorations and went through the ornaments to decide which ones to give away next year.  Also got rid of all the empty gift boxes we have been saving, the closet has some free space now.

Last weekend we went to a small art show in Redwing--it was delightful and Sue found a bowl from our latest favorite pottery person.  Theater Latte Da, one of our other favorite local theaters, had a world premiere of Lullaby.  A well done play on the difficult topics of depression and loss.  Got gifts from Brussels and Toronto.  Thanks Melodie, Jacques, Eva and Sylvia.  You brightened my day.



Nancy Usic and Liz Wernqvist are coming to visit this week from Connecticut.  Chemo on Wednesday and not sure what else we will be doing during the week.

This is a picture of a Mongolian huntress with her golden eagle.  The movie "Eagle Huntress" was shown at Sundance and hopefully will be picked up.  I love the image and it is a reminder of our incredible trip to Mongolia.  Fly high this week.

The cancer hatter

Thursday--Scott came on Monday.  This was the first day of my after steroid crash.  It came later this time since I had extra anti nausea pills (with steroids) after Wednesday.  Dragging around in the am but energy picked up some in the afternoon only to repeat the process Tuesday.  We started a Super Girl jigsaw puzzle (thanks Debbie Spurling) so that has been a good distraction--lots of red and blue....Went to see "Joy" on Tuesday.  Better than I expected and we all ended up enjoying it.  Interesting story, but Sue says a good home rental.

Dr appointment with my primary care doctor to figure out my high blood sugar numbers.  Increase dose of some pills, off other pills, it is all a delicate balance thrown totally out of whack by chemo and steriods.  Hopeing everything starts working together soon to bring the numbers back down.  I still walk every day but it is harder to get to 10,000 steps than it had been.  My speed is down so I have to increase time and sometimes that works, other times I poop out.  Still keep going back.

Sue and I are working on overdue estate planning things, had to go downtown yesterday to sign some papers and visit a notary public.  Scott took a one hour walk outside and down to the stores in Newport, over the railroad tracks and back up.  I took a nap.  We worked on the puzzle and I am hard pressed to tell you what else we might have done--take the Christmas decorations downstairs so we can sort and put them away next week.  The tree is still up and may remain so.

Today is a slow start at home, puzzle doing and a few chores in-between.  We are going to see "The Revenant"  this afternoon in the big red reclining lounge chairs then out to dinner down the hill tonight.  Scott leaves tomorrow.  Everyday something related to cancer creeps in to slow us down or interrupt forward motion,  but we are also able to do daily chores/activities since we are flexible about when they happen.  Scott says Cancer Sucks.  There is a running consensus on that.

Got a poem from our friend Stevie Beck first thing this morning--great way to start the day and sequel to some hat pictures....

Our Nancy is one groovy cat

Everyone says she’s all that

If you ask why she’s smilin’

She’ll say, “’Cause I’m stylin’ 

In another chichi woolen hat!” 

So let winter maintain status quo

Cue the winds and bring on the snow

Nancy whoops, “Swell!

It’s cold — what the hell

I look chic in my crocheted chapeau!” 

Sunday--Flexibility--we did not go to see The Revenant.  Stomach woes prevailed just long enough to make us late.  Sue and I planned to go see Spotlight on Friday--nap instead.  But we did venture out on Saturday in the frigid weather to see a Gopher men's b-ball game and we are doing so again today for the women.  Coffee after the game yesterday with Barbara Brooks, MJTC, founder and Producing Artist Director.  Got a copy of the Allergist's Wife to read before tomorrow's read through.  Lunch before the game with Mary and Co today.

It is interesting to me the images that come to mind during guided imagery and/or just as I think about fighting cancer and the tumors.  Last night I told Sue that I have not been able to get an image of a light inside and was about to tell her that I finally had one--almost immediately she said "ET."  That was my image.  Then there is the army of cancer fighting minions who surround the tumors use minion mojo and get some help from Super Girl to melt the tumors.  Then comes the chorus of "Ding dong the witch is dead..."  My guided imagery tapes often ask me to imagine being in a beautiful place, real or imaginary.  I am grateful for the number of beautiful places that we have been and the people we have met along the way that come to mind as I muster positive energies.  My cousin Wendy created a drawing of hope based on the spirit bear totem:

And Sue has gotten one hat in the past few months and insisted that we post it as well, even after last night's game:

New Chemo

Well Wednesday was the first new Chemo day.  6 hours but it all went well.  We had a room with a bed and toilet instead of the chair in the central room.  Little bit of sleep, little bit of reading, little bit of music and a little bit of boredom. I continue to like working with Dr Dan and he spent a lot of time talking with us again as I got my head around where were are in the journey.  Remaining hopeful and positive.

The port worked well and is important to protect the smaller veins in your arms from the stronger chemo drugs and of course it avoids IV entries which can be difficult and can also hurt the veins over time.  I came home with a home infusion pump, about the size of a water bottle with a balloon type function inside which pushes the chemo in as it deflates.  It was supposed to take 46 hours to empty but was done 6 hours early so I was able to be disconnected earlier than expected.  It fit nicely under my pillow at night and I only started to turn over too far once or twice.

I came home on heavy duty anti nausea drugs which I finished taking today.  Still had twinges but no real problems.  I have a funny cold sensitivity so wear gloves to get things out of the fridge and freezer.  Covering all skin surfaces as I go out and not going out of Sunday when it should be well below zero wind chill.  Thanks Gabe for the llama hair hat, it is soft and warm.  Hoping the next week goes well, next chemo is the 20th.  The next tests are in two months and the expected run of this chemo is 4 months.  I know some places do 6 so I will see how it is working and ask the doc whether that is an option or not when the time comes.

My jobs:  drink water, eat, and exercise.  I have been watching the Last Tango In Halifax on Netflix to help my keep going on the treadmill.  Somedays slower than others but trying to be there everyday or on the bike in the family room. I keep asking Sue if it is time to take down the Christmas Tree but she is enjoying it, so maybe next month when my brother comes instead of this month.

 We have had some snow, Sue was out with the snowblower cleaning the edges of the driveway.  The
birds have discovered the bird feeders, as have more squirrels but we are ok feeding everyone.  We have had a convention of woodpeckers, 2 huge pileated and some smaller ones, even the cardinals have come around. We have gone down the hill a few times for lunch and dinner.  Mary and Colleen joined us today for our favorite blueberry oat cakes and then came over to work on a puzzle with Nancy.  Nice relaxed afternoon with friends.  Tomorrow we are staying in to watch the Vikings-Seahawks game from the warmth of the sofa.  Maybe with a fire.  Then right into the Green Bay game.  Sue is expecting the Vikes and Green Bay will be going home after tomorrow. Let's hope she is wrong.

Enjoying the 50 anniversary celebration of the passing of the National Endowment of the Arts we taped--In Performance at the White, a celebration of American Creativity.  A little singing along, a little dancing--a good night.

 

Chicken soup and other random thoughts

Random thoughts:

So my early diagnosis staple was chicken soup.  Got off it for quite a while and am trying it for lunch again today.  It is ok but for some reason chicken is not my favorite meat right now.  Not a good outcome with all those boxes I still have on the shelf.

My niece and her family sent us an edible fruit bouquet yesterday--no sweets until we eat up all the fruit!!!  It is gorgeous and delicious.

And today is sunny, the high blue skies of MN winter against the white snow on the ground.  Pretty to look at through the windows--but I think it is very cold out there.  Sue filled the bird feeders yesterday but so far we have only attracted the squirrels.  Hopefully the birds will find them eventually.

The power of habitat--the other day (actually a few weeks ago) I was taking a shower and went to wash my neck and top of my back with my right hand.  The left hand came up to grab my hair and take it out of the way--nothing but air....And now my doc says I will lose my hair again--just as the peach fuzz that never fell out has been growing and giving me much amusement....

We are the producers of a Minnesota Jewish Theater Company play this February.  Sally Wingert and Linda Kelsey in the Tale of the Allergist's Wife. We have a long term love affair and commitment to MJTC.  For all you locals, they always put on an excellent production, please come! We did this once before and saw the first rehearsal and were blown away by the actors skill from day one.  That one was My Mother's Lesbian Jewish Wiccan Wedding.  A fun and poignant piece on relationships and family.

Fun stuff this past weekend, more basketball, good games with a win for the women over Penn State and a close lose for the men to Michigan State. Packers vs Vikings, Sue is kind of glad the Packers lost--they don't have to play Seattle in the first round--Vikes will be doing that here this weekend.  Went to see the Danish Girl as well.  Another terrific movie with fantastic acting.  Sad but very moving and Sue says it is good to have something other to cry about than us. And lastly writing today's blog has been fun.  You should know we laugh about many things each and every day, laughter is good medicine.  Speaking of which, here is a picture of out crocheted Polish Minion...Thanks Suzi Hagen.  Thanks for all the support yesterday on Facebook for the port implant.  Thanks to all the friends and family supporting us though this, you continue to be amazing.  This week especially Leslie my friend from high school who is a chemo nurse in NY.   She is supportive, fact filled and remains calm when I am not.

Port implant went well yesterday.  My hero Jeff was the IV installer, he is magic.  It is a bit sore to the touch today, but otherwise ok.  Now I won't need those IV installers or blood test pokes for a while....Tomorrow is the new chemo.  Nervous but hopeful.  I have to remember that the long list of possible side effects does not mean I will get them all tomorrow.  A few may pass me by and a few may take time to build up.  I will count on chemo working even while all of that is happening.

Happy New Year

Happy New Year to our group of special friends and family.

It has been a busy few weeks:  Christmas was relaxed and very nice.  Mary and Colleen had a sleepover at our house Christmas eve.  We had a good dinner thanks to Sue and worked a puzzle for a while, watched tv and enjoyed sitting in front of the fire.  Christmas we cooked another dinner and Kim and Lin joined us as well as Cathy who is our cat's visiting nurse.  More work on the puzzle with completion late afternoon.  More sitting by the fire and more eating.  We enjoyed the two days.

I managed to have Christmas week off from chemo, not sure how I managed that but we enjoyed the time off.  The two month tests took place on Monday the 28th and 29th.  A CT scan which was marred by three attempts to get an IV going.  And blood tests on the 29th.  Met with Dr Dan on Wednesday with the expectation of getting chemo.  Unfortunately the CT showed tumor growth, less than 20% but enough to feel like the chemo is not working.  And the cancer marker that went down a bit last month went back up.  Chemo was cancelled and options were discussed.

Not what we were hoping to hear and emotions are still all over the map.  There is a next chemo, harder on the body with more side effects but hopefully a bigger kick to the cancer.  I have to have a port put in, no more IV's, and will have a pump for two days of at home chemo after the infusion at the clinic.   Chemo is every other week, there are two levels of the chemo I can choose from but I am anticipating that I will choose the one with the extra punch.  On the upside--no more daily shots, the trial shots were related to the the old chemo regimen.  It is harder to be positive after a let down but we are working on getting back on track with that.

Found out yesterday, quite by accident, that my health insurance ended.  Had not heard from Hamline or their processing company that they had changed companies  Spent the afternoon online and on the phone in order to choose between individual insurance with my old insurance company or the group insurance with a new company.  Given all the activity I already had set up for next week I went with the old company and individual coverage.  Thanks to the laws that let me continue to be covered even with a pre-existing condition. Thanks Obama care.

On the fun side, basketball continues, though our teams are not winning, we went to the movies yesterday, saw "Carol" which was a beautiful film and love story, dinner after at a hamburger dive was good.  Deb and Jim were here for the afternoon today and we had pizza that Jill had sent us from Chicago-Lou Malnati's and we have both been enjoying massages.  We have snow on the ground, Nancy thinks that if it is to be cold, there should be snow.   The other night we had a beautiful vibrant sunset.  My brother comes back January 11 for the week.  He thought he was coming for chemo but now it is an off week.  That will be better. My hair continues to grow as does my hat collection.  And I have a crocheted Minion from Poland, what could be better.