Skip to main content

Role reversal

Thank you so much to everyone who has been praying for my mom. To recount, briefly, for those who do not know, here’s what’s happened.

Last April mom noticed a small bump under her eye. It was tiny, like a little sty, but it bothered her to feel a bump and not know what it was. She saw a doctor, who thought it was nothing.

Mom felt the bump was growing, so when she was home this summer, she saw several specialists here in the United States. They scanned and probed, but couldn’t determine what it was, so they decided it was nothing.

I felt it when she was here this summer, and it felt like a hard cyst about the size of my thumb nail on the bone right under her eye. It was strange, but it caused her no pain.

When mom returned to Germany, she felt the bump was still growing. It worried us both. After all, bumps aren’t supposed to grow. Mom also started having episodes of vertigo, which oddly seemed to alarm me more than her. She was probably putting an act though. She returned to her German doctor who at least confirmed it was growing, and he referred her to a specialist.

They decided the bump should come out before it was so large it affected her optic nerve.

The surgery was Wednesday night our time. It was only supposed to be a few hours. When they got into the operation, however, they found the growth was much larger than they’d expected. The tumor was the size of the surgeon’s thumb.

Instead of the neat non-invasive and little scarring surgery they expected, mom’s surgery lasted seven hours. They had to take apart most of the eye socket of the skull to be sure they got it all. Bone was taken from behind her ear and used with screws and titanium plates to reconstruct the eye socket.

The first day out of surgery mom seemed to be doing well. When I spoke with her she was herself and seemed comfortable and calm.

I called again in the morning German time and was concerned that her speech was very slurred. She told me she’d been throwing up and that they’d just put something in her IV that was making her groggy. I accepted that explanation, being somewhat a veteran of those IVs that make you nice and sleepy and oblivious.

As it turns out minutes after our call the nurses noticed the same thing and the drugs shouldn’t have been causing it. The doctor came to examine her eye and it was hard. By now mom was throwing up uncontrollably.

The doctor ripped out the stitches at the bedside with nothing for pain, and then mom was whisked away back to the operating room. They said it all happened in a matter of about 15 minutes. Mom said she was very scared because it was so clear from the frantic behavior of the staff that something was very wrong.

It turns out she had a blood clot behind her eye.

Now the wound is draining and she simply has a cup over her eye. She says her sinuses have filled with blood that keeps coming out of her nose. But, when I talked to her at dinner time German time she was clear and alert and quite happily eating dinner.

Another surgery is planned for Sunday, assuming things are better drained, to put some stitches back in.

The pathology report should be back in 10 days.

I can’t help but be anxious about what it might show. I am concerned because this growth, whatever it was, seemed to grow so rapidly.

I suppose I’m somewhat more anxious because it’s a kind of role reversal. I’m the one who spends time in hospitals and at doctor’s offices and whose life revolves around test results that at any time could be life altering.

Mom has sworn up and down she doesn’t want me to come. Her nurses tell me she’s fine and not to worry and get on a plane. Still, perhaps I understand better than most what it’s like to wait on those test results and what it could be like to get a bad diagnosis. I have also spent enough time in hospitals over the years to know that having someone around to hear what the doctor is saying who isn’t drugged up, and having someone around to advocate for you when things get hectic, really can make a big difference in care.

At this point, I suppose, there really isn’t much I could do except hover at the bedside with my Purell endlessly wiping down every surface of the hospital room. (After getting a hospital borne skin infection that I’m still fighting two years later, I’ve joined the ranks of the germaphobes.) We’ll see what the next few days and test results bring.

Comments

Anonymous said…
I understand you being afraid and wanting to be with your mother. Although being in a hospital for you might cause you more harm, if you feel you need to be there you should go. Mom's tend to down play things as they are supppose to be the caregivers and the strong ones. Keep us updated!
Andrea

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria