Day +1100: When the outside temperature rises…

“And the meaning is oh so clear
One thousand and one yellow daffodils
Begin to dance in front of you, oh dear
Are they trying to tell you something?
You’re missing that one final screw…”

12/4/2013: Greetings! Tomorrow I have my 3rd annual checkup and tenth bone marrow biopsy, so I figured I’d better catch up on the past couple of months beforehand.


Recall that because I’ve reacted so badly to Restasis for the past two years, Dr. Prescott prescribed a stronger cyclosporine solution (1% vs. 0.05%) to use only at night before I go to bed. That way, I wouldn’t need to use my eyes for many hours after applying the drops. I first tried the new prescription on October 21, anticipating strong burning from the 20x stronger mix. Imagine my surprise when I felt no irritation whatsoever! Next night, same thing, so I experimentally tried reading afterwards instead of going straight to bed. With Restasis, this would have caused blurred vision and horrible irritation. My eyes felt fine, and my vision was clear! It turns out that I must be allergic to one of the inert ingredients in Restasis rather than the cyclosporine! I delightedly let Dr. Prescott know, and she said to try the new drops twice daily. I’ve done so since with excellent results. Lesson learned: if you don’t think something is quite right, don’t give up mentioning it, even if you begin to sound like a broken record. In addition to the drops at night, I alternate using Genteal Nighttime Ointment and a mild steroid ointment, Lotemax.


After 20 UVA1 phototherapy treatments, I saw Dr. Sweren on November 27. His greeting: “What’s the definition of insanity?”
My reply: “Repeating the same action over and over and expecting a different result.”
Him: “So why can’t the guys in Washington figure that out?”

The first couple of weeks, the UVA1 treatments seemed to be helping. The spot on my back was no longer sore at all, even though it didn’t look much different. But the soreness gradually returned. Instead of improving with the increased levels, it grew worse again. Dr. Sweren recommends trying extracorporeal photopheresis (ECP) instead. The nurse inspected my veins and said they look tiny. The photopheresis needle is large with a lot of suction, so I’m going to have a port implanted next week. I envisioned something like my Hickman with dangles but they assure me the port is completely under the skin and maintenance free. I’ll let you know! The port needs to heal for two weeks, so I won’t begin the new treatments until after Christmas, December 27th. I’ll write a post, too, explaining the ECP procedure at some point.

In the 10 days since I stopped UVA1, my back has pretty much reverted to its original pretreatment rawness on the one spot. I guess that although the phototherapy wasn’t curing the problem, it was keeping it from getting worse. I also got a nice tan. ECP is essentially the same process but applied to the blood instead of the skin to try to calm down my immune system.


I had my four-month checkup with my surgeon, Dr. Gourin, on November 19th. She peered at and poked and prodded my mouth and tongue and said everything looks good. She planned to spare me from the through-the-nose scope this visit but I told her the peace of mind it would bring more than outweighed the temporary discomfort. So, scope me she did and again announced that everything looks great 13 months post surgeries. I breathed a huge sigh of relief and thanked her profusely. She noted once more how great it was that I had been able to avoid radiation and told me to return in three months for another check. While I was there, I mentioned that my gums were a little sore but they get like that sometimes and then are fine in a day or two.


Instead of getting better the next day, my gums became very sore on my left side, too painful to chew on that side at all. Fearful that my lower left rear molar was abscessing, I saw my dentist two days later, November 22. An x-ray showed nothing wrong with the tooth. He examined and felt the area, and said, “I think I know what the problem is,” and guided my fingers to some bony areas inside my mouth. “These are called exostoses,” he said. “75% of people don’t have these.” (He wondered why I laughed and muttered, “Of course they don’t.”) Based on his examination, he said he thought the problem was due to a splinter from an exostosis beyond my last molar, and I should see an oral surgeon.

I called the Johns Hopkins dental clinic the same afternoon and received a recording, “We are away from the desk or on another call. Please leave a detailed message with your name, nature of your call, and number and we’ll return your call as soon as possible.” I left a message repeating what my dentist said and asked for a call back. I also left a portal message online for my otolaryngologist, explaining what was going on. She responded she would put in a referral and see if her office could expedite getting me an appointment. By Tuesday, November 26, I’d not heard from dental, so I tried again, same message. Wednesday, Michael went in person to the dental clinic while I was in dermatology and was told (rather rudely) I could not have an oral surgery consultation without a referral from my dentist and there was no referral in the system for me. We obtained business cards with a fax number to send the referral, and stopped at my dentist on the way home. He faxed them the referral right away.

By the time I got home, I was miserable, with my jaw swollen and sore and also coming down with cold or flu. I missed Thanksgiving dinner at my in-laws’ on Thursday and slept the day away.

Friday, I was feverish, aching, and congested with a very sore throat and swelling on my left neck. Michael took me to the urgent care clinic where I was prescribed antibiotics for the respiratory infection. (More on that later.)

Because of Thanksgiving, I expected to hear from Hopkins dental on Monday. When I hadn’t, I left another detailed message, asking that they at least let me know if they received the referral and if anything else was needed. Tuesday, nothing, so I left one more message. Today, nothing still, an entire week after the referral was sent. No matter when I call, the recording is the same. I’m thoroughly disgusted and plan to stop by there again tomorrow to find out what’s going on. At least the antibiotic settled down the inflammation, and I’m able to chew again on that side.


When I went to the clinic for my respiratory infection, my heart rate was elevated, and I was experiencing some shortness of breath, so they did an EKG and a chest x-ray. Thankfully, the EKG looked fine. The PA said my x-ray was a bit odd with a concave curved area at the base of my right lung. She said she’d forward the films to their radiologist who would call me with results in a few days. They also provided me with a copy of the films on CD. My report came back fine as far as my lungs are concerned – no sign of pneumonia or other anomaly. The x-ray tech told me she had noticed the raised diaphragm on the right (hence, the curved area) and that it would be a good idea to show the images to my primary care physician to determine if they wanted to do a different type of scan, such as a liver ultrasound or CT, to check for enlargement. I’m taking the film with me to my exam tomorrow. In the meantime, I looked on the internet and discovered a “raised hemidiaphragm” can have many causes and is not necessarily a problem. It might have even been like that all along.

Some good news is that I’m mostly over my respiratory infection. Although I still have some phlegm and coughing, I’m feeling good. I was really miserable over the long weekend.

That’s it for tonight – a long day at Hopkins tomorrow! If I procrastinate posting, don’t worry. It is generally safe to assume that no news is good news as far as our blog is concerned. Also, it will probably take a week to receive results from tomorrow’s tests.

In the meantime, hoping to hear some guesses from you on the tag lines from the past several posts!


  1. You are mad! And you can be my Queen any day! 🙂

    I think I would look for a new dentist. They are so rude. I would be afraid to go to them. I would not trust them to give you good service. Sorry, but just my opinion.

    I am glad you are feeling better after a horrible long weekend. It is never fun to be sick. And more so on a special holiday.

    Glad the eyes are better. Now if they can just find the right combinations for the back and your mouth. Putting in a port almost sounds like a sci-fi movie. Your ordeal for the past two years would make a good movie. I would go to see it. Only if they don’t show the gory stuff. It would have to be PG or PG-13 for me.

    Keep us posted.

    Cathy 🙂

  2. I just read this Karen. I’m glad you talked of your eyes. I am going to ask my eye doc about different drops. After I use restasis I cannot see well. Blurred vision. Maybe I can be on something else. I’m going to look around on here for more updates I failed to see. Lori (Hang in there.)

Leave a Reply

Your email address will not be published.