No steroid shot for now...

I returned home from Philly on Saturday, after spending a few days with my sister, Robin, who lives in the Poconos. On Monday, I went to see Dr. Cohen (my eye dr. here) in order to get the steroid shot in my eye. However, on Sunday, I felt that my vision was improving a little and less foggy. I told the nurse this & requested that they perform another test prior to doing the injection. When he compared the new test with the one from the week before, he thought the fluid levels had gone down slightly. Therefore, we decided to wait on the injection. I will go back to see him next Tuesday. If things stay the same or get better, I will not need the injection & he will just keep watching the eye closely.

On Monday, I also (finally) spoke with my kidney doctor. He felt that there were only slight changes and not to worry about the small growth in my left liver. I will follow up with him in the next month to discuss a plan (possibly chemo or surgery to address my kidney cancer).

Then I talked to my infectious disease doctor from Northwestern. Although my bloodwork came back okay last Friday, he wants to repeat it and see me in his office since I have felt achy and fatigued for the past few weeks. I will see him next Monday.

Whew! That's all the medical news for today. Enjoy the last few days of freedom before the kids get out of school : )

Update from Philly...

From Suzanne:

Today, Kim was seen at the Wills Eye Center in Philadelphia. She flew out there yesterday. By some bizarre coincidence, a friend was traveling to Philly on the SAME day and on the SAME flight as Kim, and therefore, became her chaperone for the journey there. When she arrived in Philly, her sister, Robin, picked her up at the airport, stayed with her at the hotel & escorted her to her appointments.

I just talked to Steve and got a brief summary of what the doctors from Wills told Kim. I apologize ahead of time if any of this is incomplete or downright wrong! I will ammend it after I talk to Kim, but wanted to give everyone an idea of what was happening.

The doctors found that fluid is leaking from her optic nerve tumor and is causing something like a blister on her retina. This is what is causing her vision to be foggy. They said that this has nothing to do with the PDT (photodynamic therapy) treatment she had done a few weeks ago. Apparently, that was done on a different tumor? and the procedure is so mild that they said it would not have caused this. They are going to try giving her a steroid shot in the eye that they hope will reduce some swelling and hopefully stop the leaking. They are not sure that it will work & there are some risks associated with doing it (e.g. infection, glaucoma, etc.), but don't know what else to do. They said she could do it there or come back home & do it. Because there is some discomfort associated with the procedure, she decided she will wait until she returns home to do it. If this does not work, they mentioned returning there for more PDT.

Kim is staying in Philly again tonight and then I believe she will go to Robin's and spend the day tomorrow. She will most likely return home on Thursday?

To see or not to see... that is the question

Since my last post, I've seen the eye doctor several times. The blood on the retina has been reabsorbed and the swelling went down. Unfortunately, my vision is still significantly worse than before the procedure. The reason for this is that I now have a new problem. I had a scan of my eye and it showed that there is fluid behind the retina, which is causing distorted vision. The leakage of fluid is coming from the optic nerve tumor, which has sprung a leak. Dr. Cohen, my local eye doctor, has no answers for me and recommeded me to be see at the Wills Eye Hospital in Philadephia. There I will be seeing the top doctors in the country to see if they have any ideas of how to help me. These are the doctors to whom he presented my case a couple of weeks ago. Due to the urgency, I will be flying out next Monday and have an appointment on Tuesday (a 6-8 hour evaluation). Hopefully they will have a treatment plan for me, which may include a radiation implant or systemic chemo. My sister lives in PA & will meet me there to keep me company and help me get around.

Now for some good news... Yesterday, I had a repeat MRI of my spine to see if the infection was improving or was gone. It appears to be gone! Hooray! And, there didn't appear to be any change in the size of the tumors in the spine or brainstem.

This Friday, I will see my internist for a physical, bloodwork & EKG as a prerequisite to being seen at the Wills Eye Clinic.

On a completely separate note... I received a surprise book-on-tape in a bag from a mystery person. It came at the perfect time because I was going crazy not being able to see anything! I finished it in three days and would highly recommend it - House Rules by Jodi Picoult. So, thank to my secret angel!

I also want to take the opportunity to thank Brian and Darlene Schick for generously providing me transportation to Philly on a United buddy pass. Thanks also to Suzanne and Ray Baumruk for putting me up in a hotel while I am there. It is greatly appreciated, as Steve has still not found a job after six months out of work. If you have any tips, he is still looking for a medical sales or management position.

To all of the mothers out there, I hope you have a wonderful Mother's Day!

Will let you know what happens in Philly...