Wednesday, June 20, 2007

Heart to Heart

Yesterday at my clinic appointment, I participated in a new study group about how doctors communicate with cancer patients. They began by asking a series of questions about where I am mentally, emotionally, etc. I was actually surprised at all the positive answers I gave, but truly, mostly I am fine and grounded and such. Unless I am in such denial that I don't even know that I am lying through my teeth, but seriously, I don't think so.

Then I had my appointment, first with Dr. Amy Bland, a second year fellow. She has only a year left, good for me, and then she will leave, and wants to go to possibly N. California. So you lucky left coasters will get to have her, she is terrific.

Excellent news on the CA-125 front. It dropped from 88 to 64. They are going down more slowly than when they were in the 500+ levels but that is to be expected. Down is still good!

Dr. Valea and Terri came in and we had a discussion about "managing the cancer". Managing the cancer is code for this is not curable. It will come back, they cannot say when, and then we will keep trying with the chemo combo that seems to be working until it doesn't. Drug resistance is what happens to many and I am sure to be on the top of that list, since my body rejects a lot of the toxic chemicals they try to treat me with.

So we might move on to adding Avastin, a biologic that is made by Genentech. It is very expensive, but fortunately for me,it is covered by my insurance. And I have friends at Genentech if I need to score some for free from the inside.


The next couple of paragraphs deal with tough issues, so if you are wanting to believe I will live forever, don't read any further!!!!

And then, after Dr. Valea left, Teri and I had the heart to heart about time. So, I asked, I don't have say 15 years? No, not 15. How about ten? No, well most have between 2 and 5 years at this point (we are talking time between now and dying). I said, "well, this is me we are talking about, so let's add two more years for feisty-ness and call it 7." Which would take me to 2014, Sofie would be in middle school (hopefully DSA) and we would have had seven more wonderful years. I would have a sense of what type of grown up she might turn out to be. And she will be better equipped to deal with her mom dying, I hope. Not that it will be easy, but better than at 8 or 9 years old. It is hard to think about but on the other hand, it makes things more clear in terms of what to focus on and put time into.

And Jamie will have had a lot more practice at being a mom, she keeps rising to the occasion, so that is good. And Sofie is fully comfortable with her in that role. Probably she would move from this house to another house to have a fresh start. But that is too far away to think about.

We have talked about this house, which is affordable (good) even if I go on half pay due to short term disability. And we have discussed moving to a house with either a first floor master OR a one story ranch style house, because doing the stairs some nights even now is too hard. But mostly I can do that fine in the AM, and so I do things that way. Anyway, the housing thing is hard to make a call out on. If I stay here, I can create a master suite downstairs, and enter via the outside steps, which are less steep, or perhaps even create a ramp (but it would be steep). OR I can continue upstairs, the house is wireless access now, and I could get a laptop, far less construction needed for that. Moving always makes me anxious, because of all the packing and unpacking. And I love this house, mostly, except for the never-ending lack of storage for all the clothes she has to grow into and stuff like that.

I am pondering on what having two to seven years to live means. First, it could mean that I exceed the expectations. I have insurance (Term Life) that is good until I think Sofie is 22. Then if I am still alive, that ends. So living until she is say 19-21 means she is covered for the future. And that is important to me.

It does mean that saving for retirement is not a high priority anymore, I will continue the % I do on a monthly basis, but that is all. The rest should be for living well now, so that we continue to create memories, and I can travel with her each summer, until I cannot anymore. I want her to love travel the way I do, and to see Africa, because that was such an amazing trip for me.

We also have plans, made in 2002, to take her to Paris with her Godmother Barbara when she is twelve (2012) and possibly to Ukraine. I did a birth mother search for her recently, and unfortunately, it did not lead to finding her birth mother, who may have used a fake name (she for certain made up the address) and there don't seem to be any leads. But I tried, that matters.

I want quality of life, which to me means that I continue the treatments as far as they go, but when they start to fail, I stop, so I can enjoy the life left to me without nausea! I don't want to leave her too soon, she is delightfully changing so much right now. But I also want to be realistic, and that means knowing that my life is not going to be as long as I might have planned (coming from that Dannon yogurt eating Russian stock that lives past 100).

So the next few years will be interesting. I will work as much as I am able, then see what I need to do to make it work for me to live but not work all the time, since living seems more of a priority. And we will take the summer to travel some, and enjoy our time together.

Mortality. It is a gift to know that it is limited. It cuts out some or a lot of the bullshit. And makes it even more important to tell people, like those reading this blog, that I love them and I thank them for loving me so well.

This will be tough news for my family, I think we were all hoping for a cure. But life has it's weird pathways. So mine is taking a turn that I had not expected 18 months or so ago. I am glad I will be on this journey with folks I love and trust. And of course, I will keep you all posted.

Because it is my nature to make lists and plan things, I took some time to outline the travel plans through 2012. Here you go:

2007 R Families Cruise

2008 Playa del Carmen, Mexico (Mom is turning 80 this year and it is her choice of where to celebrate)

2009 London

2010 Hawaii? Or maybe a Grand Canyon road trip.

2011 Africa (she will have graduated fifth grade this year)

2012 Paris and possibly Ukraine

2013 and beyond....I am not sure, I have always wanted to go to Greece and Australia/NZ.

So I will be needing a lot of miles!! (smile). I actually have been saving up miles for a long trip, on British Airways, either to Africa or the Ukraine one. I probably will use them for Africa, just to be sure I get to use them.

And in between this lovely itinerary, we also have lots of regular time to make special and ordinary, but fill with love. That is the most important part.

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