I have not written for a few days, I guess I have been reeling in a whole new diagnostic problem.
I had a good trip to Eugene and was able to talk with the oncologist about my fears and concerns.
We reviewed my case from perhaps a more realistic approach and clearly this is the area of endometrial cancer that has a lot of holes in the data. My surgeon Dr Dotters is going to a major oncology gynecology conference and Dr Gemmel was going to encourage her to pursue preliminary data about the more recent studies.
I guess this all left me with a better feel about all of this and at least a good feeling that my doctor has a clear feeling of where I am at, and she seemed to really care.
Unfortunately, yesterday I was "blessed" with another problem that likely has nothing to do with the endometrial cancer. I had a echocardiogram on Thursday, which showed at least some evidence of pulmonary hypertension. Although I do not have all the answers yet and we contacted a cardiologist in Eugene and the case is far from clear, it is still an extremely concerning finding. We will be going to Eugene this week for a stress echo and consult with the cardiologist.
I have been having intermittant shortness of breath since before the surgery. It has been so vague, and all my chest cts were normal as were my chest xrays, it was a hard thing to describe and between surgery and chemo, I guess I have figured I had enough "good reasons" to be short of breath, that it was likely nothing important.
Pulmonary artery hypertension is a disorder that is rare, and not much is known about what causes it, there is a familial form that tends to run in families, then there are those that occur "out of the blue"
It is also caused by those drugs that were banned many years ago, the fen fen....weight loss drugs, it occurs in AIDS
a secondary form of it occurs in people with chronic bronchitis , advanced lung diseases, and at the later stages of those who suffer sleep apnea.
It is basically where the resistance builds up in the pulmonary vasculature, and the right side of the heart fails because it is pumping against a high resistance.
Without treatment people live about 3 years, with treatment perhaps 6, and a lung transplant is curative.
So though we do not have any solid answers about this, we are looking at something else that will most likely drastically shorten my life.
I think that with this latest news, though extremely upsetting, I am clearly put into the stage of trying to figure out how I want to spend the next few years, which is perhaps a good step in what I am doing.
Ken and I are clearly at a stage right now where he has to work, however we are going to pursue ways that that can be minimized, and while we are trying to sell our house and have been for years, we may sell "other properties" just to allow us the time to spent right now, working less.
I am actually feeling pretty good this morning with this. Ken and I are still trying to get out to the woods every day for a 2-2.5 mile walk and I try to make it brisk, just to prove to myself that there is nothing wrong with me.
I am hoping that none of this new info will have any effect on my cancer treatments, but again will know more by the end of the week.
I was thinking a lot the other day about my blackday blog and whether I should have sent it and whether I would drive people away explaining my deep dark thoughts about it all.
There is a sense of trying to be up all the time, because it really makes things more comfortable for the people around you. And you want people around you, who could possible want to go through all of this alone. I guess I felt perhaps a bit selfish in not keeping to myself. Here I am sharing my grief with others.... is that wrong?
Then I thought more about society and how there is a tendency to hide the ugly bits in a persons life, just sweep them under the rug, so that no one else every has to deal with them.
Always make everyone else confortable.
I was talking with Kertis the other day and we got talking about this, and the conversation somehow led on to the very similar situation amungst soldiers. It has long been the policy in the military that soldier just "buck up" and never talk about the horrors of war. No one else has to be exposed to that unpleasant conversation where a soldier talks his deep dark secrets, the ones that he will carry with his his entire life, all by himself.
I guess I wrote "your own worst enemy" based on this concept.
The hardest things a person must endure, are endured alone in our society. Somehow there seems to be something wrong with that.
Not only that, but in the case of the soldier, no one ever really knows what war is really like.
In countries like France and Germany, everyone know what war is like, it was on their doorstep, it was out in their streets and often right in their home. In the US war in only on the the tv, along with all the cops and robbers shows, and all that separates them is an advertisement.
How I digress,
My thoughts go out today to Yemaya, who lost her Bill a few days ago.
He died swiftly. Yemaya all my best wishes go out to you and please let me know if there is anything we can do.
Love and Peace