Wednesday, August 22, 2018

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. 









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