Busy Weekend - back to normal?

 I am feeling so much better since Tyler and Jamie's wedding.  John and I spent a week at Raquette Lake and experimented with the timing and amount of pill popping I needed to do to maintain some form of equilibrium in my stomach and my brain.  Having no other stressors around,  I could concentrate on reactions and do some changing up.  We are still adjusting meds but we have most of it under control - at least for now!


I have been needlepointing, knitting and painting - getting back to using my hands in a more defined manner that wasn't easy when they were shaking.  Typing is still a little shakey - which might affect the frequency of blogging... but here I am!  I am also trying to get back into pickleball, but that too has been affected - reflex time is slower as well as vision.  But I am working on it.

This past weekend we celebrated William's first birthday,  Dr. John's birthday and had a mini GA reunion dinner and a Brunch with friends from Chicago and Steamboat!  Exhausting but I enjoyed it all.  Here are a few pictures!

William and his Radio Flyer on his B'day!

Katharine Ann and William
 at his Birthday party

Angie, Cathy and me with Jim and TJ

As you can see,  I am improving from the brain radiation still.  I am very grateful for every day and every friend I have.  It is good to hear from each of you.  As I am feeling better,  I am getting better about responding.

Congratulations to Tyler and Jamie

 Last weekend in Ogunquit. Maine Tyler Anderson and Jamie Welch got Married!!!!  It was a beautiful weekend on the coast.  Tyler rented a house on the shore that housed most of the two families for three days.    Tyler and Jamie planned to get married summer 2019, but with my diagnosis, they moved it up!!!  Sweet but scary.  There were times this summer where I just focused on being able to make it til September 15th.

I DID make it and am feeling better than ever.  So happy for Tyler and Jamie as they make it official.  It was a great family reunion again!  I am so happy to have Jamie in out family.  She is a beautiful lady, inside and out.  She and Tyler are so right for each other.  couldn't be better.

Here are some photos I want to share, although these are from a small sampling,  I wanted to share the good news with all of your,  

Jamie and the boys
David, Will, Tyler and John

Me with William KA and Will

me and my boys
John, David, Tyler and Will


I hope to post a couple more when we get them.

A DIFFICULT SUMMER

Tyler arrived the day after the brain diagnosis

It’s been a crazy summer. Since the discovery of the spread of the cancer,  we have alternated between retreats  to the Adirondacks and Doctors appointments. My time has been concentrated on family, both mine and John's.  I have had little energy to spend with the friends that have supported me thus far, and who I treasure.  I have truthfully felt that I have not been the best of company.  Frequent naps have helped me through these times. 

Davey a few weeks later to see me and his nephew William

With the realization of   changes in my condition,  the boys   have been visiting and spending wonderful time with me.  It has been exhausting as I have not felt like myself for the passed two months.  Not to mention frightening.  Combine this with  over 20 days planned with the DeWeese family for reunioning around a wedding as well as at Raquette Lake,  my energy was zapped.  I felt I only had the strength to deal with family - and not very well at that.  All the various medications,  combined with the strong, intense radiation left me quite nauseous and quite dizzy.  Only in the last few days can i truly say i feel like myself.  I hope it will last.

John enjoying lobster on our visit to Boston

Will, William and
KA joined us at the lake along with Tyler an Jamie

John Anderson also sneaked out from Boston a couple of times and we visited him in Boston - so all four made their love felt!  5 including John D.

John took me for two nights to "The Point" - a marvelous secluded Adirondack retreat for recuperation - skinny legs and a wig-hat!

Tomorrow I have an appointment at Mass General in Boston to see what the options are from here and if any sound feasible to me and John.  We remain hopeful,  although this new brain stuff is a game changer.  It has removed some of the options that had been on the table and we are getting into more uncharted water.  With renewed strength of the moment,  I am becoming more positive and hopeful.  Again,  we will be taking this in small steps with milestones to keep me going.   I realize how blessed I am with those that share this journey with me.

UPDATE - research continues with a new drug for the ROS 1 gene treatment of my type of  cancer with a search to find something affective not only on the lungs but also for the spreading to the brain which is what I am facing.  There is another option of treatment available.  There are many "Possible" side effects with this and the recommendation is to continue the   treatment I have been on until something changes.  They will monitor more closely for changes - more frequently.  It is great news that there is a next option!  I am staying strong as a lot of my energy has returned and the nausea has subsided some. 

Moving forward

 Six weeks later.... after two weeks of brain radiation and four weeks of recovering from that,  The MRI reported back that the radiation did what it was supposed to do. The lesions are not growing they have actually shrunk and seem to be stable.   Hopefully they will remain that way for a long time!  And for today things are still improving.  I feel I can start making some plans for the next month at least.

I have kind of gone underground during this period of time and John and I have a lot of time up at the lake.  We have concentrated our time with different families. Most of my strength has been dedicated to family And recovery. We have returned home basically for doctors appointments and color selection on the House.  ( There is a crew at the house working diligently to repaint it !  New colors...at least 5!)

 I am at the lake right now and limited in what I can put into the blog so I will sign off and resume more when I get home .    Thanks for your concern and support .

Thank you for your thoughts

Thank you for your thoughts, I am having difficulty communicating but truly appreciate your sincerity . Typing texting not working too well at this moment but will hopefully recovery soon . I feel like I have aged 10 years in a week I am unstable on my feet and turned into a drop things from my right hand . They say this is the result of the brain lesions and the radiation treatments be patient with me and know that I love you and appreciate your support . Your kind words mean a lot to me

predictive changes

My positive progression has had a long streak. The adoption of Lucretius has been a welcome challenge to our lives and loves. As with any new puppy he has his own special challenges. we are all learning how to get along and he is a Pure Judy who loves to play,

as we are getting ready to spend more of the summer at the lake we have decided to take no more large trips on the schedule. Instead we are focusing on nesting and improving our Victorian home. Phase 1 is almost complete as we have ripped up the gardening around the house and replanted, I will finally have some perennials to play.

Phase 2 is much more ambitious as we are planning to paint the house - have painted-and change up the colors. This is a bold step but I am excited to see the next step.

  This is a game changer. We all knew when the saga started that there were going to be many ups and downs. I have been blessed with 2 1/2 years of relatively little encumbrances to my survival and general health. It appeared to be a miracle and I enjoyed every minute of it as did my husband John. It was the story of victory and
success and fighting and staying positive.

Please forgive me for not calling each of you individually, but I just couldn’t . You have been loyal and concern friends and I needed to share.

That fight is not overdifficult right now but I am not giving up. I need more knowledge of what the future holds in store and where the elements of health can be found. I will be looking for and with your encouragement, prayers love,and hope, to continue my Lucky streak.

So here’s the story my cancer has metastasized into my brain. There was a possibility of this happening according to the statistics from the chemo that I had been taking. Dr. Rathmann did not encourage doing MRIs until there were some indication of a problem. That indication came in the last couple weeks when I was having problems concentrating, remembering things, and with manual dexterity. Thoughts of Alzheimer’s ran through my head as did the fear of brain tumor.

It took a lot of courage to call Rathmann and ask for an MRI. An MRI got scheduled immediately and I spent the whole day in St. Francis going through a battery of tests and and imaging and then consulted with my doctors. When all my doctors ascended on the run together I knew I was in trouble . Multiple lesions were discussed, possible causes, variety of courses that could be taken now and down the line. Two phrases that stood out were “this is very serious” and “we are not sure.

There was clearly no time to hem and Haw over the next steps. I was immediately begun on a regimen of 10 days of radiology to be followed by re-evaluated tests. During that time and for at least a month I will not be able to drive. And not until the two weeks has passed will they be able to chart my next course.

When John told Will where we were going he immediately called Tyler who bought a ticket to come here and be with me. That truly touched me but also petrified me. He has already been a great help and encouragement and accompanied me on a few Dr. trips. Brother John is coming in next week for a few days. Then we are off to the lake for the Fourth of July. Keeping busy is Essential right now. I am very lucky for that. David Junior will be here the next week.

Side note this is exactly three years to the day of their father’s initial diagnosis

Mentally processing this series of events is very taxing.

An emotional memorial

This last week was very bitter sweet. An amazing family gathering in Steamboat Springs, reminiscing over good times shared by the Anderson boys and two of David’s closest friends.  One year after his death, we honored his memory with 4 days of enjoying the Steamboat Springs.

Will, John Davey
Bob Vasko, Tyler, Greg Furda

Tyler and Will organized the outting, renting a house in town for all of us, and a supherb day of fishing on the Yampa.  EVERYONE was successful and caught at least one fish.  More memories to add.

The four sons floated a section of the Yampa north of town while Leigh, Greg, Bob and John and I waded in the icey waters of the Yampa south of town.  

Davey

Johnny

Will

Boys floating

Tyler

Bob Vasko

Leigh Furda with guide
she and Greg caught the most fish

Dr. John

Me

Tuesday the "guys" headed up

Sarvis Creek, another favorite spot of David's, to bid the final formal farewell to the father and friend lost way too early.

The house was well equiped and since we had so many good cooks,  we ate very well every night right at home.  Weather was beautiful and Spring was in full bloom.  

Leaving Steamboat and the four boys was a bit wrenching for me.  So many wonderful memories for so many years, coming to a close...  at least for the time being and with David Sr. making the trip with us.  

In the Yin and Yang of life,  the next planned family trip will be to officially welcome a new member to the Anderson family as Tyler and J'mie will marry.  I am so looking forward to celebrating that event.