Still making progress

Waited till this morning to get the test results and my now favorite CEA number.  I thought last time that Dan was expecting I might be ready to plateau but fortunately my CEA went from 109 to 86--so I get to keep doing this chemo thing.  Funny what you end up being happy about.   I had been targeting 45 in my head so will keep that imagery going this week.  Anyone who wants to help--think 45.  I know I can think 0 but I am taking it in small steps.  I told Dan last week that I at least wanted to break 100.  CEA measures the amount of protein given off by cancer cells.  Less protein, less cells--Things keep moving in the right direction. Go minions go, they do good work.

Had a weepy morning--anticipation or tired or just because.  Kirsty, today's nurse told me stories about her puppies to get me going and lunch helped.  After 7 visits I finally discovered warm water in the lobby so I can still drink after the cold sensitivity chemo, that is a big help.  We started late today.  I guess on regular days I am too tired to be upset and just sleep walk into getting going on the chemo.  The day of chemo is not so bad, one of the drugs starts making me feel that something is coming into my body but not in the same way that the take home chemo does.  I think the anticipation is more about that part of the chemo then the in clinic time.  It is a two day out of body experience in your body,  steady and constant and you just have to wait it out.  Thursday night we are going to a Janis Joplin play at the Ordway.  Distractions are good.

Last week was hard-our friend Kim Koeppen's husband, Steve, passed away. Kim was my rock at Hamline and was always good for conversation, good perspective, great ideas and a good laugh every now and again.  We still get together for coffee on a semi regular basis and I look forward to those times.  She stopped by on Monday and we talked about Steve, cancer, which took Steve, futures, teaching, Salli, her 13 year old, and things that can make you laugh.  Sometimes life just doesn't seem fair.   It was nice to connect with several Hamline colleagues at the funeral--it is a good group of people.

So many of you have probably noticed that there is no hair color yet, Sue is sure about the idea and I have not gone to any shops with the advice I received from many of you.  My hairs are choosing to grow at different speeds, so I do have one hair that is about 2 inches long.  Some have suggested a bow and I have considered a haircut, but to date no action has been taken.

Scott and I finished a puzzle before he went and I have not done any since.  We have pulled out all our boxes with travel souvenirs, itineraries, postcards, money and have been sorting out the things to toss and things to save.  Fun memories, and once sorted we will look through each trip and enjoy the memories more thoroughly.  The kitchen counter is covered....Our other house project was to go through books, at least 10 boxes have made their way out the door so far with more yet to come.

After chemo--so I get attached to my ball and we collect our supplies which make it look like we planned to stay a month. We closed the place down so the clinic gates were down and we had to find the back entrance. I decide to walk to the car instead of getting picked up...unprepared, mittens are in my pocket so not on my hands so that I can cover my face.  Cold sensitivity on the nose--feels like I walked through a spider web, just on my nose and it does not rub off.  Hand warmer and mittens on my nose in the car bring things back to normal.  Home to the couch with Jessie, mac and cheese for dinner, watch a few tv shows and off to bed.  Rousing evening at the Albrecht-Desmond household.  Fitbit showed 729 steps at home after chemo, did not think to walk in the morning with my extra time.

We kept busy over the last two weeks.  Zootopia was fun and a good distraction from last chemo, another women's bball game, unfortunately they lost, but Rachel Banham made first team all american, took several walks outside on warmer days, tried to see My Name Is Doris but it was sold out so we went shopping at fleet farm and Costco.  After wearing the same two pairs of jeans for 7 months I added a new pair of levis to my collection of jeans that fit and found a pair of capris and a nice t-shirt.

On the  social scene I unfortunately missed a lunch with Tamara since I was not feeling well.  Sue went to the restaurant to let her know and they had a nice visit.  I am glad they finally got to meet and next time Tamara will come here so we can share travel stories--our travels and hers to Japan where she goes often.  We got together with Lois, Jan, Betty and Kathleen, folks we have known for 30+ years.  I taught with Betty at Burnsville and would not have survived those early years with out her guidance, smile and encouragement that we were on the right path. It was wonderful to catch up and just chat and eat the evening away.  I met Anne Bartel for lunch, one of my first practicum teachers when I was studying at the U--so another 30+ year connection--another good time of eating and chatting, we wave at basketball games but don't get to talk often.  We went with Barbara Brooks to dinner and then to "They called her Captain"  a one woman show about her mother's history in the Army, here and abroad.    Her mom is now 95 and sat in front of us at the show, a very sweet story and show.  And for Easter we went to Darin and Mark's, with Kim and Lin, Pat, and Dan and Pat.  Nice gathering of friends and family and delicious food with the ham provided by a pig from Darin's sister.s farm.

Gift highlights:  a minion ball that laughs when you bounce it and digital singing birds that can sing solo or in a trio and have songs that can be dow
nloaded--there is an app for that.

 Backyard turkey doing a bit of a mating dance, a sure sign of spring.

My doc says I am doing well, I tell him I have a lot of support.

Scott is here this week so he has accompanied me to chemo.  He is reading the paper and I am obviously writing the blog.  We just talked about how grateful we are that I can tolerate this chemo so well and that I can continue to get it as it continues to do it's thing.  My CEA number when down again and that keeps everyone happy.  I asked about how we decide how many more chemo sessions there are and Dr Dan said that at some point the numbers will plateau and then we would consider stopping.  This is number 2 of my anticipated last 4-6 sessions.  I asked about even doing 8 but I think he suspects a plateau will happen before that.  My understanding is that 8 would be the limit.  Everyone is still surprised as how well I tolerate the chemo, I just keep being very thankful.

The Gopher women basketball team is playing in the NIT tournament tonight so we are all headed there for evening entertainment.  I with chemo in tow and a little tiredness from the day.  But it should be fun and I can sleep late tomorrow morning.  Scott found that Rachel Banham, our star is #10 on the NCAA all time scoring record so depending on how many games we play in the NIT she should be moving up that list.  She has been fun to watch this year and we are hoping for a good game tonight. Post Game: Gophers won and it was the Rachel Banham show with Rachel scoring 48 points. Sunday is the next game. She is now the 6th all time NCAA woman's scorer, having passed Maya Moore, Cheryl Miller, Elena Delle Done, Chamique Holdsclaw.

Had a good two weeks.  I am off Metformin pills (taking another pill and insulin instead) for my diabetes and my stomach ailments were less severe throughout the two weeks.  I occasionally think it is funny that I had to get cancer to learn how to spell diarrhea--there is always something new to learn....We are still trying to navigate how to make plans during the first week when my mind is willing to be out and about and my body is stuck like glue to the couch.  Sue is good about being sure we get out and do something, even if just a spin around the grocery store.  Good weather is helping make outings easier and we enjoy Thursday through Tuesday which are near normal days, with a few tired moments or a nap.

So I have a head full of peach fuzz as I like to call it.  I am anxious to dye it pink or blue but as I float that idea I am getting consensus that I may end up with pink or blue dyed skin.  Not the look I am going for.  Does anyone know of a non-permanent idea and/or one that will not turn my head colors.  I may be out of luck but I think, "What's the use of having peach fuzz if no one can see it?"  Sue tells me to let go of the idea and unless someone has a solution for me I will do so....

I got some new hats this week--winter caps from the Daytona Bike Week and cool winter hats with blue tooth speakers in them courtesy of Leonard and Dorothy.  I may try the blue tooth today, keep my head warm and listen to music and sleep all at once.  Sounds like good after lunch behavior.  Edie sent a puzzle book which is a nice distraction.  I finished my pencil jig-saw puzzle and waited for Scott to come before starting another.  We are doing one from Zion National Park.  I collect pins and puzzles when we go to parks.

We have reserved 3 nights at Yosemite in May, a few weeks after the 6th chemo session.  Our friends Deb and Jim will join us.  We are trying to figure out what else to do between there and San Fran for a few more days to make it about a week long trip.  We will fly in and out of SF and drive to Yosemite and where ever else we pick--suggestions?  And the big news, we are booking a trip to Japan.  We found an Africa trip that was oh so tempting, a repeat of 2014 trip and we almost set on that.  We both hesitated and asked Dr Dan.  He said either trip was fine we just needed to have access to reasonable health care if needed.  So we could get that in either place but it just feels easier in Japan.  We found an itinerary we like with Alexander and Roberts with a group size of 16.  https://www.alexanderroberts.com/destination/asia/from-japans-inland-sea-to-the-alps-(1).aspx
I am getting more and more excited about it now that the decision is made and we can be anticipating the trip.  I would not have imagined this past October that we would be planning another trip and it does not escape me that it is 4 months away and I am confident that we will be able to go.  And grateful.

We had a good two weeks:  Jerusalem at the Science Museum in IMAX.  Beautiful scenery and story through the eyes/lives of three young woman.  And we learned some new info, which is now forgotten.  Glad we went.  We took the cast and crew of the Allergist's Wife (the play we produced) some wine to say thank you.  It was great fun to see them and to tell them how much we marveled at the transformation from the first reading to the show.  Hugs all around and a few pictures and they were off to prep for the show.  We stayed to see the first act again and enjoy all the laughs and somehow or other heard a few new lines, can't figure that out...We enjoyed dinner before this with Phyllis and Mary Margaret.  Always good to see them and catch up on family, doings at MM's work and of course to do a little political conversation.  Fun night. Had some hints of Spring, pulled out a few chairs on the deck and though you can't see her, Jessie cat loves to hang out there with us--it was70 degrees!

Sunday we saw Gypsy at Theater Latte Da, another local theater with outstanding performances.  The role of Rose, the mom,  was played by an incredible actress very well suited to the role, her voice filled the theater.  We went to see "The Lady in the Van" with Maggie Smith.  Great movie.  Our friend Sylvia recommended it and boy was she right.  Also attended a members only night for the Lynx, toured the practice facilities and locker in the new Mayo Clinic sports center.  Cheryl Reeve, the coach, spoke about the team, the future, the players new and old.  She always talks about them working as a team and the culture of the team that new players want to join and work hard to do so.
Nancy had lunch with Mark from Hamline and he invited Veena along so it was a great catch up time.  Errands, continued paperwork and purging on the other days.  We always appreciate the 3-4 non tired days that come pre chemo.

I have discovered that harder then the chemo day, which is long and boring, is the chemo home infusion.  It makes eating tasteless and just makes my body feel funny for two days as more chemicals drip in.  I go in Friday afternoon to get it disconnected from my port and then I crash.  And I receive my very special $6000 injection--Neulasta to boost my immune system and helps to reduce the risk of infection.  Couldn't believe my eyes when I saw the cost.  You can see ads for it on tv, but they don't mention the cost.

Special treat this week was the arrival of a "Super Luke" jar.  When he was 6 and and diagnosed with leukemia he took to drawing and they transferred a drawing to a jar.  He recently celebrated his last chemo, is cancer free and has been one of my inspirations since my journey began.  The jar is going to be my Random Acts of kindness jar.  I will either fill it with names and draw one, or pick a name and write it down to put in the jar once I send an email or make a call or...

 




Chemo day seems to be a good day to write so look for  an update in two weeks... Happy St Patrick's day.

Let's do the Happy Dance!!

Found out on Friday that my scan was improved but did not know till today what that meant:  No new tumor spots and the tumors that are then are shrinking. AND the tumor marker that was going down went down again from 160 to 116.  Yea!!  see me dancing in my chemo bed??!!  

So I have four treatments under my belt and he would like to to 4-6 more, normal course is up to 12 but they stop before that, not sure what all the determining factors are except tolerance.  He said after the last chemo we take monthly blood tests and scans every two months to see what is going on.  If it holds at bay for a good amount of time we can try chemo again when the tumors start to grow again.  I  The longer the better since it means the first round of chemo really worked well and might do so again.  Shorter means we would look at something else cause the cancer was probably still growing.  I asked about trials and other options and making contacts now.  He said it is too early and the next best thing will be different by the time I need it.

We talked about trips to AZ and Yosemite, he said go anytime now.  After the last chemo he said 6 weeks and then plan a real trip, now we just need to figure out where to go....

This is almost too much for me to take in.

Last week I wrote about chemo getting harder.  It is helpful to know that even as it is hard it is working.  That will help this week.  Waiting for the CT test and results was hard last week.  The rest of the times when I am not waiting for scans I just keep thinking about the minions doing their work and now Kung Fu Panda gets involved sometimes--it all becomes routine, finding out if it is working or not sets off anticipation emotions and those can be all over the map.  Here is what I wrote earlier.

" Either chemo is getting harder or I just don't remember what it is like from one time to the next.  I do remember last time wondering if I would be out of the funk by the time my family came so maybe it was hard then too.  I like to think that I have a good week to come, Wednesday to Wednesday but this time is pushing new limits, we will see how today goes.

I want to tell my doc that now I look like someone on Folfirinox, losing weight, diarrhea, and vomiting.  Whatever chemo symptom honeymoon I was on, it is now over.  It makes is harder to do my three jobs, drink water, eat, exercise.  But I am trying to do what I can each day and Sue is working hard to keep me on track with all three.  "

By Thursday I was feeling better and had several good days before returning today.  As the next chemo rounds are this hard--which in the scheme of things is not so bad, or harder I will look to the kids I know and others doing similar work.  Super Luke and Avery, two kids both fighting cancer and doing it with great determination.  Our great-nephew Gabrielle who from his time of his birth has been fighting lissencephaly, a rare brain disease.  And a shout out to Steve (not a kid) at Mayo--get those electrolytes in order.  And as a reminder of life, we welcome Takunda's new baby brother Tenaka.

For fun:  We got to see our play.  What a treat especially to be at the first reading and then see the characters and relationships come to life.  The play was transformed by the performances and set/costume design.  Hats off the the fine cast and crew.

SCADUSCH.  We went to see Kung Fu Panda 3.  A little different quality than the play.  Fun none the less and a good counter to the week I was having.  I can still see him striking a pose to fight, it is a good one and comes in handy every so often.  And then Eddie the Eagle--looking for upbeat, not cinematic excellence.  What fun and a feel good movie as was needed.  Still on the list--the Revenent, Room, Brooklyn and The Lady in the Van.  Which reminds me--Downton Abbey ends this week-what a bummer.

An art show at the Landscape Arboretum was a nice way to get out for the evening, the orchids in the lobby were gorgeous.  Bought one outside decoration for our patio table, a stained glass flower.  Stopped at Eden Prairie Mall to shop at Von Mauer--a nice alternative to Nordstroms and Macys.
Breakfast with Deb and Jim--great to see them but wish it were on their boat in Florida instead.  Sue and Mary went to the MN vs #5 Ohio State women's basketball game--overtime win.  Sad lose to Maryland but looking forward to the Big 10 tourney this weekend.

Other than that we continue our purges, one shelf, drawer or cabinet at a time. Feels good to do it but it is a long road. Nancy has a puzzle going, it is all pencils lined up in rows from top to bottom.  And we are working with Darin and Mark on plans to remodel the guest bathroom.  They will do the demolition while we are away on a short trip.  Scott comes for the next round of chemo for a week--he is now retired so can come anytime.  He is trying to come here once a month and we love having him here. And I am lucky to continue getting new gifts--a Nancy drew book cover puzzle, to go with a purse I had, and a Georgetown hat.  I get a little grief for it being from Georgetown but it is the school of Mr Cal Rohde, swimmer extraordinaire and so I am proud to wear it.

Gotta go now, have to start planning our next big traveling journey...it will show up in the blog.