Well, My Mom and I have had a really nice visit together here in Maryland…mostly eating, watching TV and lounging in our comfy hotel beds.While we have had a nice relaxing time, we are only now able to truly enjoy it knowing the results of her hospital visit. (the picture is of building 10…the clinical center)
I have never blogged about it on here before, but basically here is a brief history of our Maryland visits.
Summer 1998 Mom was sick but no one knew what was wrong.
December 1998 When they found out what was wrong, the doctors in Orlando said they couldn’t operate, her cancer was too far along and that she was going to die. She was recommended by Dr. Kleinman to be a research candidate at NIH in Maryland.
February 1999 Mom had surgery to remove a 10 lb tumor on her kidney. Dr. Linehan performed the surgery
Mom was diagnosed with Metastatic Chromophobic Renal Carcenoma. It is a very rare form of cancer that grows very slowly which is a good thing because the doctors have time to try new drugs should one not work. She has been through one additional surgery and three medications since. Dr. Srinivasan has become her regular physician who she sees every time. Last year when we were in Korea and I couldn’t come on the trip with my Mom, he called me overseas to tell me about her results. Currently she is on Temsirolimus Chemotherapy weekly and has been for the last 3 years. She has to have CT scans once every 4 months but, the doctors are very optimistic that her Cancer is manageable and becoming a chronic disease. She is on blood pressure medicine and thyroid medicine, and a few others, but basically…she is really doing fantastic. Since her Cancer is so rare, there aren’t even enough people to have a study. She currently has lesions on her lungs and kidney…but they are small and after being shrunk by some nasty drugs a few years ago, they are remaining small due to her weekly treatments.
We come to NIH every year now for checkups. At first it was every 3 months, then 6 months and then once a year. The hospital is incredible. It is a place full of hope. There are art galleries, a library, an art room, a fitness center, a children’s home, a family home, research labs and well basically looks like a college campus. There are doctors and patients from all over the world who come for treatment. They have studies on bone marrow, cancer, stem cell, blood, heart and lungs, the human genome, infectious diseases, genetic diseases…and well tons more.
Anyway, if you have to be ill…NIH is the best place to be. They have access to all of the latest technologies and drugs and are open to anything to help cure you. Its hard every time we come here. We ride the shuttle from the airport to the hospital and another shuttle to the hotel. Then back and forth on the shuttles with the other patients. It is pretty interesting when you are sitting on the shuttle talking to people from Oklahoma, New York, California and Georgia. One lady is in a Bone Marrow Study and has been here since November…living out of hotels and the hospital, being a patient just trying to get healthy. Everything when you are a patient here is paid for by the grants and government so the patients don’t have much out of pocket costs when they are here. It is a relief when you hear good news but it is always a little hard because you want to scream from the rooftops the good news, but you know that people around you may not have had the same news.
Its amazing when you think about it. I was 18 and a freshman in college when this all began. Now, I am 31…married and an adult. If it wasn’t for NIH my life may have been very very different…Mom’s too.
So, as of now…mom is great. She is actually asleep and tomorrow if it isn’t too hot, we will stroll around DC for fun.If it is too hot, we will just enjoy our fantastic girl time together.
XOXO love you Mom.