Tag Archives: epithelioid leiomyosarcoma

Annus horribilis?

Last night I couldn’t get to sleep until after 4 a.m. due to several things; the least of which was having had an afternoon nap and drinking tea with supper.

The big reason was thinking about the past year. (WordPress started the new date at 6:00 p.m. CST, but today is actually still January 26.) One year ago today I coughed up a handful of blood. Twice.

When Joe got home from work he took me to a Care Now clinic, where they did a chest x-ray. I fully expected the doctor to say that I had pneumonia (again) or at the worst, TB. I was not expecting him to be so gentle and concerned after he looked at the x-ray. And I certainly didn’t expect him to tell me that it was probably a lung tumor. Which it was.

He had his staff make an appointment for me to have a CAT scan the next day. After we got back home that night, I looked up lung tumors on some reliable websites (like webmd.com). For the symptoms I had, the news was not good. Normally about 6 months to live. To say I was in shock for about 3 days puts it mildly.

Then there was the hurry up and wait tests and doctors appointments over the next month and surgery on Feb. 25. They all wanted to tell me that this was going to be major surgery and recovery would be tough, and just exactly what they were going to do. I didn’t want to hear any of that because … well, at that point, what could I do about any of it? Having the information was not really helpful.

And it was awful. Really awful. There were times I thought I was dying. In fact, one of our friends who came to see me told me much later that she thought that I actually was dying. I was in the hospital almost 2 weeks, most of it in intensive care. Then the very physically painful ride home that night. We had to stop mid-way for me to take more narcotics just to make it home.

Bleeding from the 2 drain holes grew worse until it was critical for me to get back to the hospital emergency room. I was re-admitted and had another drain tube inserted and almost another week in the hospital; again, most of it in intensive care. Texas turned from winter to spring while I was there.

Those weeks I think of as The Black Hole.

And then, months of recovery at home. Months and months of it. It was many weeks until I was out of pajamas or a nightgown or able to do anything.

One of the real blessings at this time was that Joe’s employer allowed him to work “from home”, which meant my hospital room (because Baylor Grapevine has wi-fi), then from our home for about another month.

Diagnosis of the pathology took one month to get back from the Mayo clinic. They said it was a rare sarcoma called an epithelioid leiomyosarcoma. Malignant but completely gone because that lobe of my lung had been removed. My oncologist wanted to be certain, and referred me to M.D. Anderson. After a Keystone Kops fiasco (except that it really wasn’t funny) they tested the sample for a couple of hours and said “no, it wasn’t”. They didn’t know what it was, weren’t interested and refused my doctor’s referral to them. We’re still not sure what it was, but we hope that it’s still gone. Periodic CAT and PET scans and chest x-rays are done to keep an eye on it.

So, we went to Vanderbilt in Nashville. They looked at it for about the same amount of time and said the same thing as Anderson, but were much, much nicer about it. And there was that lovely trip to Nashville. What a beautiful city.

I joked at the time that it’s a tough year when vacation consists of a 2 day trip to a cancer hospital. Little did I know that that trip was to be about the only recreational time we’d have all year.

Around the first of August, our daughter-in-law (who is separated from our son) took our grandsons to Colorado for vacation. I had a bad feeling about it – that she wasn’t coming back. And she didn’t.

Sept. 19, she called and said that she couldn’t take care of them and would we come and get them and take care of them for the rest of the year. We left for Colorado within 2 hours. The details of what we learned on that trip are very personal and I won’t go into them, but we decided that it was in the best interest of the boys to sue for custody.

So, Joe withdrew money from his retirement account for us to retain an attorney and we filed papers with the court. Twice we went to court, only to be told that continuances had been granted. Then there were the depositions.

I knew nothing about depositions before all this, but they are horrible, horrible things. Our DIL’s was first. The tension was so awful; I was sick all afternoon.

But her deposition was nothing compared to mine. They were both 3 hours of questioning but the difference was the demeanor of the attorneys. Ours was a gentleman who was quite respectful to DIL.

Never mind that our DIL’s family has lots of $$$. She was represented by an attorney from an agency supported by the United Way – for free. Remember that the next time your employer puts the pressure on you to contribute.

Her jackboot, feminist lawyer skewered me for 3 hours and wanted more. My incision was beginning to really hurt by the end and I said ‘no more’. She complained that I hadn’t answered the questions, was evasive and hostile (or something like that).

Well, yes. I was. In fact, I wish now that I had been less cooperative than I was.

The rules are that they can ask any question they want. Our attorney could only object to the form of the question, not the questions themselves. And they were really invasive.

“How much money is in your checking account? In your savings account? How much does your husband make? What did you spend on groceries last month? Where did your son meet his girlfriend? Where does she work? How much money does your son earn?” ad nauseum. And much, much worse. Lots of questions of the “did you quit beating your husband?” type. And those are not nearly the worst ones. She was very hostile. She must watch all those courtroom shows on television because that’s how she really acted.

When we first went in and sat down at the table, I could see that she had printed off some of the posts from this blog, which she used against me: A Wonderful Day and Prodigal Sons. She was particularly vicious about Prodigal Sons, asking if I was such a lousy parent what made me think I could raise someone else’s children.

Texas law sets a very high bar on proving an unfit mother, and without paying for the witnesses to come from Colorado, we couldn’t prove our case.

So, on Dec. 8 it broke our hearts to have to turn the children back over.

Christmas was not much fun but we put up a tree and decorated for them anyway. Amazingly enough, DIL still allows them to visit occasionally. And we are really thankful for that.

2010 was the year of the major health crisis, the recovery, the custody issues, the death of 2 close friends, financial troubles, 2 relationship breakups in the family, and it ended with my 96 year-old mother being hospitalized for pneumonia and helping to make the decision to take her off of the treatment (in keeping with the directives she wrote in a living will she had written years ago). And the death of two of our beloved cats. Not that that in any way compares to the other issues, but this loss was also stressful.

The Good News?

Our faith remains strong. The Lord Jesus sustains us.

We still get to see our grandsons.

Our family is intact.

The 2 friends that we lost will be waiting in heaven and we’ll see them again.

Finances are really tight, but the medical bills are paid.

My doctors were very good and the nursing staff at Baylor Grapevine was excellent. Especially in ICU.

Even though there are residual physical problems, I am able to function much more normally than I had expected.

My loving husband was able to be with me every single day in the hospital and cared for me at home for a month. In all that time, he only had to use less than 2 days of vacation time and even completed an extra project for the client.

We have food, shelter and clothing. And I’m so glad I saved those clothes that I outgrew a few years ago, because when I lost nearly 50 pounds after the surgery, my things didn’t fit anymore. It’s a rotten way to lose weight, but it is a compensation and I’m glad of it.

And it’s absolutely amazing: my mother seems to be recovering!

I really hope that we have learned what the Lord wanted us to learn in all this, that our sorrows were not wasted, and that we are stronger.

Praise God, for His mercy endures forever.

Leave a comment

Filed under Faith, Vicissitudes of Life


It took almost a month, but the pathology report is back.

The mass which was removed (as well as the whole lower lobe of my left lung), was an ephithelioid leiomyosarcoma. It’s a rare condition which usually starts somewhere else.

So now tests will be made to determine if it began in my lung or elsewhere and if it has spread.

Today a PET scan.

M.D. Anderson in about a month.

Recovery from the surgery has been so slow it’s difficult to notice improvement, unless I compare myself to the dark days in the hospital. I can now walk unassisted and am much more awake and aware. The nausea is mostly gone. My appetite has improved a little.

Until all this happened, I had what I like to call a “very healthy appetite”. But the anesthetics, or something, caused my taste buds to go haywire and almost nothing tastes right.

This has been a rough way to lose 25 pounds.


Filed under Vicissitudes of Life