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 : )
Wednesday, May 19, 2010
Tuesday, May 11, 2010
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?
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?
Wednesday, May 5, 2010
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...
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...
Tuesday, April 20, 2010
I can('t) see clearly now...
Last Friday, I had the PDT procedure done by Dr. Cohen. I had a weekend planned to clean the basement and go see some movies because I couldn't be outside in the sunlight. Instead, I spent the weekend blind as a bat! My vision has gradually decreased over the past few days. On Monday, I went back to see Dr. Cohen. He said it appeared that I have a leakage of blood behind the eye that is blocking the light as well as the ability to see things (in addition to my already poor vision). He said that it should improve over the next week. However, I called him today to tell him that it is still getting worse. He was surprised to hear that my vision had worsened rather than improved. If things continue to worsen through Friday, he said he would do surgery to irrigate the blood out of the eye and laser the vessel closed. He would probably do this next Monday or Tuesday. He will be out of town for the next few days at some vision conferences and will be presenting my case at Wills Eye Center on the east coast. He expects there will be many oncologists there & wanted to present it so that hopefully someone may know of a systemic treatment they could do to stop the optic nerve tumor from leaking and growing.
On another note... after three years, I decided I should make a trip to the dentist. I was hoping that at least one part of my body was in good shape, by not so. I need two crowns, a root canal and gum surgery. Yippee! Lucky me...
Tomorrow, I go get my pick line out (Yippee for real!) and have an MRI of my pancreas and kidneys. I'll write more later this week once I discuss the findings with the doctor.
On another note... after three years, I decided I should make a trip to the dentist. I was hoping that at least one part of my body was in good shape, by not so. I need two crowns, a root canal and gum surgery. Yippee! Lucky me...
Tomorrow, I go get my pick line out (Yippee for real!) and have an MRI of my pancreas and kidneys. I'll write more later this week once I discuss the findings with the doctor.
Tuesday, April 13, 2010
The latest and greatest
I had the MRI of my spine after returning from Florida. Unfortunately, the infection has moved from the thoracic area to my cervical (neck) area and has affected two bones. They said I needed to continue IV antibiotics for three more weeks (which I just finished) and then start on oral antibiotics for six more weeks. I will have another MRI of my spine in three weeks and see the doctor, at which time I will hopefully be done with this!
I went to the eye doctor and was pleased to see my vision improve from 20/400 to 20/200. 20/70 is the legal level required for driving during the day, so I'm still not able to do that. Upon seeing the dr., he was very disturbed by the changes going on in my eye. There was growth on a large problem area that I've had treated 50 or so times already. It has grown larger and is starting to leak. This could be troublesome if the fluid continues to leak and goes toward the macula (that would cause decreased vision). He wants to try a new treatment, which I will be doing this Friday (April 16th). It is called PDT (photodynamic therapy). It involves injecting a dye into my veins and blasting the tumor 10 minutes later with a laser. The dye will be drawn to the tumor, because it is a vascular tumor and the laser should burn it. Unfortunately, this dye stays in your system up to 72 hours. During this time, I will need to avoid any natural light, or risk 3rd degree burns or further eye damage. Perhaps a double-feature is in order?
Another unfortunate eye finding is that the optic nerve tumor has also grown 15% and is leaking as well. He has no options for me at this time & wants me to look into systemic chemo treatments. I feel like I'm right back where I started! The dr. will be attending several conferences around the country next month and will hopefully find a protocol I can fit into. I called my kidney doctor to see if he knew of any studies and he feels that Sutent is working fine for his patients and doesn't know of anything else. Given the growth in my eye tumor, he wants me to get an MRI of my kidneys and pancreas. I'm getting it done on the 21st and will hopefully be given some good news.
On a brighter note, I am feeling better and have regained a lot of my energy! The sunny days have been helping keep my spirits up. I look forward to enjoying the summer and hopefully reconnecting with many of you socially... Will keep you posted. Wish me luck!
I went to the eye doctor and was pleased to see my vision improve from 20/400 to 20/200. 20/70 is the legal level required for driving during the day, so I'm still not able to do that. Upon seeing the dr., he was very disturbed by the changes going on in my eye. There was growth on a large problem area that I've had treated 50 or so times already. It has grown larger and is starting to leak. This could be troublesome if the fluid continues to leak and goes toward the macula (that would cause decreased vision). He wants to try a new treatment, which I will be doing this Friday (April 16th). It is called PDT (photodynamic therapy). It involves injecting a dye into my veins and blasting the tumor 10 minutes later with a laser. The dye will be drawn to the tumor, because it is a vascular tumor and the laser should burn it. Unfortunately, this dye stays in your system up to 72 hours. During this time, I will need to avoid any natural light, or risk 3rd degree burns or further eye damage. Perhaps a double-feature is in order?
Another unfortunate eye finding is that the optic nerve tumor has also grown 15% and is leaking as well. He has no options for me at this time & wants me to look into systemic chemo treatments. I feel like I'm right back where I started! The dr. will be attending several conferences around the country next month and will hopefully find a protocol I can fit into. I called my kidney doctor to see if he knew of any studies and he feels that Sutent is working fine for his patients and doesn't know of anything else. Given the growth in my eye tumor, he wants me to get an MRI of my kidneys and pancreas. I'm getting it done on the 21st and will hopefully be given some good news.
On a brighter note, I am feeling better and have regained a lot of my energy! The sunny days have been helping keep my spirits up. I look forward to enjoying the summer and hopefully reconnecting with many of you socially... Will keep you posted. Wish me luck!
Wednesday, March 24, 2010
Walking on Sunshine
I just returned from a not-so-balmy, but very relaxing trip to Fort Myers, Florida. It was exactly what I needed!
The day before I left, I had a big scare & was afraid I wasn't going to be able to take the trip. The doctor received my lab work & told me my kidney levels were dangerously high & my liver was having trouble filtering the antibiotic. They told me to immediately stop the IV infusion and I would probably have to go to the hospital to receive the first dose of a new drug. Luckily, they switched me to a drug that I now take once a day over 20 minutes. It is so easy & I feel so much more free! I thought the way I had been feeling was mostly due to the infection. However, once I switched drugs, I no longer have the fatigue, shortness of breath, fevers, difficulty focusing and overall depressed feeling. Within 24 hours of stopping the IV's, I felt back to my normal self. I was even able to walk the beach and went from lying on my couch to riding a camel at the zoo - LOL! I'll post photos at some point...
The nurse comes tomorrow & hopefully this drug is bringing my levels back to normal. I get an MRI on Monday & the 8-week course should be done a week from Monday. Hopefully, this infection is resolving and I can be done with all of this!
Hope you all have (or had) a great Spring Break! I'll post again after my MRI...
And some good news... Not only has my luck changed with feeling better, but the week before I left I got a call from the Illinois State Department of Rehab & was told that they would pay for my handheld magnifier, my computer software which allows me to use my computer again & an acrobat that has a camera that can enlarge any image (e.g. tv, documents, books, even my own face so I can see to put on makeup!). This is HUGE because the cost of these items would be over $5000 & they are not covered by insurance! I'M SO HAPPY!
The day before I left, I had a big scare & was afraid I wasn't going to be able to take the trip. The doctor received my lab work & told me my kidney levels were dangerously high & my liver was having trouble filtering the antibiotic. They told me to immediately stop the IV infusion and I would probably have to go to the hospital to receive the first dose of a new drug. Luckily, they switched me to a drug that I now take once a day over 20 minutes. It is so easy & I feel so much more free! I thought the way I had been feeling was mostly due to the infection. However, once I switched drugs, I no longer have the fatigue, shortness of breath, fevers, difficulty focusing and overall depressed feeling. Within 24 hours of stopping the IV's, I felt back to my normal self. I was even able to walk the beach and went from lying on my couch to riding a camel at the zoo - LOL! I'll post photos at some point...
The nurse comes tomorrow & hopefully this drug is bringing my levels back to normal. I get an MRI on Monday & the 8-week course should be done a week from Monday. Hopefully, this infection is resolving and I can be done with all of this!
Hope you all have (or had) a great Spring Break! I'll post again after my MRI...
And some good news... Not only has my luck changed with feeling better, but the week before I left I got a call from the Illinois State Department of Rehab & was told that they would pay for my handheld magnifier, my computer software which allows me to use my computer again & an acrobat that has a camera that can enlarge any image (e.g. tv, documents, books, even my own face so I can see to put on makeup!). This is HUGE because the cost of these items would be over $5000 & they are not covered by insurance! I'M SO HAPPY!
Thursday, March 11, 2010
I'd like to thank...
After watching the Academy Awards the other night, I had a dream. In it, I started my speech by thanking the academy & then I said, "No wait, I want to thank my friends and family for all the support over this past year." LOL Can you believe it has now been a full year since this story began? It was last February when I tried to get into the chemo study at NIH for the optic nerve tumor.
I have done a lot of reflecting as I have been laying around this last month. Not a day goes by that I don't think about all that everyone has done. I hope you all know how much I truly appreciate every little thing - be it a phone call, a visit, a card, etc...
I've been down for the count the last month. I continue to have an infection and remain on antibiotics via a pump that I schlepp around with me 24 hours a day. I just completed week four & have at least 3-4 more weeks to go. I have an MRI scan in three weeks to see if the infection is clearing up.
Alyssa and I are going to Florida next week to stay with my aunt in Fort Meyers, FL, along with my cousin and her two boys. I hope the sunshine will work wonders on my energy level!
I have done a lot of reflecting as I have been laying around this last month. Not a day goes by that I don't think about all that everyone has done. I hope you all know how much I truly appreciate every little thing - be it a phone call, a visit, a card, etc...
I've been down for the count the last month. I continue to have an infection and remain on antibiotics via a pump that I schlepp around with me 24 hours a day. I just completed week four & have at least 3-4 more weeks to go. I have an MRI scan in three weeks to see if the infection is clearing up.
Alyssa and I are going to Florida next week to stay with my aunt in Fort Meyers, FL, along with my cousin and her two boys. I hope the sunshine will work wonders on my energy level!
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