Sunday, November 02, 2008

So, when we last spoke...

I was talking about June, and t-shirts and such...

We didn't go on a real vacation this summer. We did go to the boat a few times, did a little sailing, but not as much as we would have liked. The first part of the summer was very hot and rainy on weekends, and then in August the weather turned cooler and delightful, but the Captain's schedule got very tight and left us little room for sailing. But we're leaving the Good Ship in the water this winter, so we can go over occasionally and spend a chilly afternoon, with the little space heaters doing a little something with the penetrating chill.

We did take the beagles over one day. Pedro is afraid to leave the boat, and is afraid to be picked up, so when you try to take him off the boat, you suddenly find yourself straddling the land and the sea with a wiggly 40-lb bundle. It's not good.

On the other hand, Daisy likes to leap for the dock. She has not figured out that sometimes the dock is closer to the boat than other times, and three times now we have had to fish her out of the bay by her slip-knot leash. Picking her up by the neck out of the water does not appear to faze her in the least.

So, in any event, my pulmonary function is improving, or is at least improved, to the point that my readings, dear reader, are as normal as ANY of yours, with a few tweaks. My de-saturation is almost non-existent, except in cases of extreme stress (like carrying heavy things up stairs). My doc has essentially told me to wing-it with the oxygen, so I have been going without more and more, so far without incident. I went to church this morning, sang out loud, upped and downed and all-arounded with no symptoms whatsover UNTIL I went into the restaurant at brunch and began to get a big flashing blue and orange spot in the middle of my vision. I have those most often when I am carrying things into the office from my car in the morning. I wasn't carrying anything at that time, so I'm not exactly certain what made me do that at noon.

Church was a little emotional today. All Saints Day (transferred from November 1) is the day they read the necrology, the list of all those who have died in the last year. My friends Loren and Viola, and most of all my friend Amy, were on the list, and it was all I could do to hold it together.

My friend Amy was diagnosed with melanoma a little before I was diagnosed with PH. She had surgery, treatment, and was treated with all the new meds, but last spring she got into a Phase I study at Johns Hopkins, and I knew, and she knew, that they only people accepted for Phase I studies were the ones for which there was no other hope. She looked great to the end, but two days after she graduated her oldest son from high school, and they had gone to Martha's Vineyard for a vacation, she lost her battle. She left her three sons and dear husband. I get survivor guilt every time I walk into our church, and it is neafly more than I can do. I had a friend who lost a child once, and she said the pain doesn't go away, but it does become expected.

And that's where I am. I expect to hurt when I see her sons, her husband, her house.

I received word that my friend Teresa died of PH this morning. Teresa was the daughter of an old friend, who was diagnosed with PH just after I was. Teresa had a variety of physical and emotional problems that made treating her PH almost impossible, and she decided a couple of weeks ago to stop her treatment.

My friend Sheila lost her father this week. My friend Rose lost her dad last week.

May light perpetual shine upon the souls of the departed. Amen.


Teddybear said...

I am touched, I am sorry for your friends passing. I pray there will be more healed than deaths. PH right now is getting me mad.

Colleen said...

Ellen, I never really see your vunerable side, but I can see it in this post. I am sorry for the losses of those who were dear to you. It is never easy to hear of a death, especially when they were someone you were close to. Today was a bit hard at church for me, too. They also read the names of those who died this past year, and it was sobering to realize just how many we lost. I hope you find comfort in knowing that those who have departed are lucky, for they are in a much better place than we are!


Wendy's Mom said...

Ellen, I am sitting here in tears from your post. Thank you so much for remembering my Dad and I. I feel so lost right now. However, knowing I have wonderful friends like you is helping me get through this.
I am so sorry for the lost of your good friend and other friends. I know you miss them all! After all you are human!
This disease can be horrible for some and better for others.
Keep fighting my Dear Phriend!

Love ya,