No doubt in this heart that while it was worth it for Scott to enjoy the crashing waves on the beach, the expense of Scott’s exertion in the day caused problems for him last night. Any kind of heat whether direct sun, body heat, hot tubs, fever etc can spike the fentynol patch dosage so that is is releasing too much into his system. Side effects such as extreme dizziness and even hallucinations……we experienced that and lots of other fun stuff. This is not a vacation. No matter how much we wish it were. No matter how positive a spin we put on the blog.
Meeting new people, forging new friendships with transient hotel guests has given him a lot of joy and kept him in the game of life. The flip side is he has had to say goodbye to even more friends, as they leave the hotel and new potential friends move in. This is bittersweet but also definitely worth it.
Scott thinks about the timeline hanging over his head every day. In fact he asked me to write this post. He has resolved any lingering conflicts with people, said goodbye to all whom he cares about, and tells me he has nothing left do do now but live the remainder of his days spending time with me. When he first discovered his prognosis two months and one week ago he did not have any idea of how much pain he would have to endure, how difficult simple tasks like walking would be, how frustrating it would be to obtain small creature comforts in Goa such as cushioned toilet seats, down pillows, wedge support bed cushions, a chair that sits well, prescriptions filled, the list goes on. Shopping for these things feels like being on a scavenger hunt that can go on for days. We are not being obnoxious Americans. He is terminally ill in a foriegn country. No hotel– no matter how upscale– converts easily to hospice care. Everyone here is doing the best they can to accomodate each new challenge as it comes up.
Even a hug from a well meaning friend poses hazard for him now. With ribs and backbone poking out and the pressure of the ascites compressing his organs and squeezing his lungs, friendly hugs or pats on the back or slaps to the arm or bumping into him accidentally cause him bruising pain that can last for days.
The only goal in Scott’s mind was getting to Goa. Now we have been here awhile. We arrived in India November 2nd and in north Goa on Dec 1st. We did not expect the tropical heat and humidity to be like this in the winter season. Nor did we realize the rustic condition of the roads in Goa…it is remote and conveniences need to be planned in advance and ordered from away. Much like our beloved Deer Isle, Maine. I asked if the decision would have been different had he known the difficulties we’d encounter? Scott considered the question and all its import. He answered no. He is where he wants to be. It is what it is.
i am happy ,this is the right place,last night sang a song w aneels son,newly arrived,was for me magical soft guitar and was like floating on air my darling katy was asleep not fifty ft.away,wish i could have serenaded her to sleep,she is my rock and soulmate.
You are strong and terrific people.
Scott thrives on people – all of whom are potential new friends, more folks to laugh and share happiness with…
I am so glad you are where you want to be, and that you are surrounded with loving friends, both near and also far away. Love you both.
Hi Scott and Katy, I just wanted to drop you both a note to express how much the two of you have inspired me on your *trip of a life time*. One of my favorite people was Jimmy Valvano, coach of the men’s basketball program at NC State. He always had something to say, but one quote he said in a speech I will always remember, he said: * To me there are three things everyone should do every day. Number one is laugh. Number two is think — spend some time time in thought. Number three, you should have your emotions move you to tears. If you laugh, think and cry, that’s a heck of a day.* * * Everyday I read the posts you two share, and you have made me feel all the above on a daily basis. This inspiration, has helped me get back to the things I love, art, wood carving and enjoying my life with a new perspective. For that I am eternally grateful to the both of you, thank you for giving many of us *”a heck of a day”*. I wish you both to continue sharing your adventure for a very long time. Love your art Scott! Hal On Fri, Dec 21, 2012 at 4:00 AM, going to goa
Hi Scott, Hi Katie,
Thinking of you.Hope you manage some fun.Did you connect with Frank Ames? Best from Yosi, Grant, Grace and Isaac in frigid Maine
We never did get to Frank, Grant. Scott would love to hear from you if you can, email email@example.com
Reblogged this on going to goa and commented:
This early post shows how far we’ve come. It also underscores for me the way this trip has been like many smaller separate journies, the disease has morphed into so many different phases, disabling Scott gradually.
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