Monthly Archives: May 2007

Summer went in for surgery last week to have her Thymus gland removed. Not Thyroid or Thalamus… Thymus.

Summer was diagnosed with Myasthenia Gravis (MG) back in February. Myasthnia Gravis is an auto-immune disorder that affects the neuromuscular junction, blocking the muscle’s normal ability to respond to communications from the brain. What does this have to do with the Thymus you ask? Good question. The Thymus gland helps with the development of a healthy immune system during puberty. After it’s job is done it becomes vestigial. Basically a fatty deposit no longer actively operating. Patients with MG have been found to have an enlarged and active Thymus gland and it is believed that this is where the rouge anti-bodies are being designed.

Thymectomy has proven to be a very effective treatment for MG patients and, other than immune-suppressant drugs, is basically the only treatment there is. So, off she went to have it removed.

If you haven’t ever held the hand of someone you deeply love as they lay on the hospital bed before heading off into major surgery it is quite an experience. An experience I doubt any of us will be able to escape as we progress through life. Those moments are full of hope, concern, fear, anxiety, and a wash of other emotions. I knew she was in good hands but very few things in this life are certain.

Four long hours later the doctors came up to tell us that the operation had gone incredibly well. They were able to extract the Thymus and all potential Thymic tissue surrounding it. It was textbook.

Then comes the hard part for us, the recovery. Watching someone come out of anesthesia can be a spooky thing. They are so tired and scared and emotional and drugged-to-the-eyeballs that it can be a pretty jarring experience for everyone involved. Luckily I already had some experience with this and knew that she wouldn’t remember much of her time in recovery and ICU. The pain killers and anesthesia would see to that.

We spent two days in ICU under the screams of the many sensor alarms and sometimes fellow ICU patients. The ICU is a terrible place to try and get any rest, especially for the patient. After those two restless days she had two-thirds of the tubes removed and she was allowed to move up to the cardio-thoracic inpatient floor. While much nicer than the ICU it is still a terrible place to get any rest. The thing about a hospital is that it’s a hospital. There are an incredible number of well intentioned people stopping in to check on you, make you breathe into a tube, clean your floor, bring you food, restock supplies, etc… We eventually had to request that only absolutely essential staff come in between the hours of 10pm and 6am so that Summer could get some regular restful sleep.

I keep saying we. I stayed with her pretty much every moment I could. I had a rough time being away from her at all. It’s just one of those situations where you want to be there even if it is only to be there. Just so they know someone is with them. I got about 10 hours sleep in 4 days.

Slowly at first then much more quickly she has regained her strength and lung capacity. By the end of the second day in inpatient care they discharged her. A total trooper, now that she’s home she’s already going on mini hikes in the park behind her house. And during it all she always had her sense of humor. Maybe you can tell, I’m very proud of her.

Only time will tell if the Thymectomy has sent the MG into hiding forever. We’re both very optimistic and the prognosis is good.

Thanks to all of you for your thoughts, prayers, calls, text messages, flowers and cookies. We have both appreciated having such great friends throughout this.

In the past two weeks I have experienced some amazing – life changing – events.

The first was proposing to my girlfriend. I’ve been working with my cousin on the ring since November, I knew a long time ago that this was something I wanted to do, but I wasn’t aware of the process of having a ring designed. I’ve written a short piece about it that I’ll finish soon and publish in it’s entirety. For now, let’s just say, it’s more intense than I thought it would be. Not that I had any idea what to expect. Having a jewelry designer in the family to help guide me through the ins and outs of the business was incredibly helpful (Thanks Marq!).

After all the stress of getting the ring designed, produced, and delivered. Then you have to propose.

I had it all planned out. There was a lakeside cabin and a rowboat all rented and ready to go. But it was not to be. Summer needed to have some pre-operation preparation completed before her surgery on May 9th. so we had to preempt our “fishing vacation” to sit in the hospital for a few days.

Things couldn’t have turned out better in the end.

After Summer’s treatments were finished and before her “Minus Thymus” party. I asked her to join me for some photography at the Japanese Gardens. She wasn’t all that interested and eventually I had to ask her to join me “as a favor”, to which she agreed. We were walking around the gardens taking pictures – actually I was scouting out locations to propose since the waterfall was too full of tourists – and eventually made our way to the pavilion overlooking Portland. I asked her to stand in front of the view of downtown so that I could take a picture. So she promptly hopped on top of the bench and threw out her arms. “No, not up there, stand down here” I asked.

“Why?”

“Please?”

“ok.”

I took the picture, reached into my pocket, dropped to one knee and said “So I can do this…”

Pulling out the box and opening it I said “Will you marry me?”

After a couple seconds of processing (later she would tell me that she was trying not to jump to conclusions) she started crying (the good kind) and said “Yes!”

I sat holding her on the bench for a little while and when we got up to leave we realized that the tourist group we had been avoiding had made their way around the pavilion and were applauding.

She had already planned a small get together that night to celebrate before her surgery so she was able to shock her friends with the announcement at the party. And so it became a Minus-Thymus-Engagement party.

Like I said. Things couldn’t have turned out better.