Saturday, February 02, 2008

Time Marches On

I didn't even recognize the second anniversary of my diagnosis. Of course, I remembered it when I saw the date, but you, my vast reading public, did not hear from me. This must be getting routine.

My dad just came home from the hospital this week, a bit sadly, with care from Hospice. He did not recover well from the cold that sent him to the ICU after New Years, but when I called this morning, he answered the phone. He isn't himself, because he has a hard time remembering relationships (he called my brother "your uncle") and he is easily confused. But he can get to the computer from his bed, and play solitaire, and he can play his guitar a little. I don't know if he can sing. He used to sing constantly. He burst forth in song at odd moments; in the middle of breakfast, at my sister's rehearsal dinner, while driving down the road. Now his wind is too precious for song.

I went to see my doc for my second anniversary present. I saw my doc, my NP, and some docs from the National Institutes of Health, who are working with the PH patients at my clinic. Everything looks fairly normal, 400 meter six minute walk, no problem with my liver, and I appear to be fairly stable. Hooray!

NIH doesn't do a lot of stuff on their campus treatment-wise, but they do a LOT of clinical trials there. So, if you have cancer, or diabetes, or IPF, or PH, you may go there for studies or trial treatments, but not for a long-term treatment. The nice part about it is that they pay for all the tests, so, for example, if I were in a trial there, they would do a right heart cath, and an echocardiogram and lots of bloodwork, and my insurance would not be billed and I wouldn't have any co-pays. However (and isn't there always a however, even if there's no but?), there are some side effects to some of these treatments.

The doc talked to me about taking part in some of the studies. I was asked to be in a study last year, but it turns out I'm too healthy for it. A great reason to be rejected! However, there are some other studies coming up that I may be eligible for. He said that the one he thought would come up next is a mild 16 week course of Taxol (the breast cancer chemo drug). He said Taxol works by killing fast growing cells, which the overgrown endothelium and the plexiform lesions in my pulmonary vasculature are made of. "Oh, by the way, for that reason it may also make your hair fall out." He just kind of dropped that one in passing. I'm just vain enough that this may be an issue. But who knows? Maybe starting from scratch will be an improvement? And maybe I'll find out how gray I actually am... eek!

Today I went to church and helped out with a confirmation class. I made a Powerpoint presentation, modeled after a Jeopardy Game, with answers and questions about the Old Testament. I made the questions too hard for this generation of young Christians in formation. Next week, we'll have the Who Wants To Be A New Testament Millionare? game, and a much easier version.

Afterward I came home and picked up my husband and we had an elegant lunch at a very elegant little joint in downtown Old Town. Today was a busy day for him on the phone, evidenced by the fifteen minute phone call he took in the middle of lunch. Then we went down the street to my new favorite shoe store, and he bought a pair of decent dress shoes (he always buys whatever he can find at the discount closeout store), and sadly, they had a sale on and I bought two new pairs of shoes, one a pair of Icon ballet slippers with Botticelli's Venus on the Halfshell tattooed into the leather, another a pair of Zeeta clogs (cork sole like Birckenstock's), black leather with gold skull and crossbones printed. They look like shoes that I need on the boat in case pirates attack! He got Ecco perforated wing tips. Both of mine were cheaper than one of his...

I realize that I don't think that I've told you that the Captain has a new job. He has worked for more than twenty years for the Federal Aviation Administration, first in Orlando for twelve years, and now in Washington. Just before we went to England in July he was selected to be the manager of the accident investigation division of the agency. The division's territory is worldwide, for US air carriers, and for all US-manufactured aircraft or componants (for example, some of the airplanes built in Canada and Europe have engines built in the US). And he gets beeped and called for every accident or incident of any consequence. Today he was beeped nineteen times before lunch. He doesn't have to respond to all of them, but they do let him know about all of them (by text message at the beep). Sometimes he has to respond, and he has a staff of eleven very experienced, very expert and very respected investigators who are on call 24/7 to hop on the next plane to Timbuktu, if necessary. One of his guys has been in London for the last couple of weeks, looking at the possible causes for the British Airways plane that landed short of the runway at Heathrow. Fortunately, no one was seriously injured in that one, and fortunately for the investigator, he's in London and not in Timbuktu.

We get a lot of phone calls in the middle of the night. They don't scare me anymore. Especially when I see the phone number of the communications center on the caller ID on the phone.

5 comments:

Merle said...

You certainly do have a way with words Mrs. H. I hope your Dad builds up his strength and shows signs of improvement, congrats on your hubby's promotion and I love those shoes -- what size to you wear -- I might be interested in some hand-me-downs, just joking lol. As for the trials; well, knowing you, I'm sure you will search it all before any decision is made. PS, I would love a copy of the OT PPP.... ME

Colleen said...

First of all, Ellen, Happy Anniversary!! May you have a ton more to celebrate in the years to come!

Secondly, rarely ever do you say anything that makes me cry, but what you wrote about your father singing brought a tear to my eye. He's in my prayers. I hope he is able to get some strength back.

And thirdly, those shoes are cute! Maybe you should have bought 3 pairs to make up for the amount the Captain spent? I think you deserve another pair! hehe
~Colleen :)

Kristi said...

I hope your father is able to regain some strength. It is wonderful that he can still play music, maybe he will find his voice again. I am praying for him.

Those clogs sound very interesting. My second anniversary was in Jan. I just assumed you were dx much longer than that. I do wish you many more years to celebrate.

KristiV

barb michelen said...
This comment has been removed by a blog administrator.
Kathy said...

I enjoy your blog...you write a lot, which is great...can you write more often??? I checked out the Anglican site...I am Episcopal...I am going to look at it more later on when I have more time :) God Bless