For about two weeks Karen had been having migraine symptoms--painful headaches, light and odor sensitivity, nausea, and vomiting. For quite a while the doctors thought that it was only indirectly related to her cancer. Her radiation oncologist didn't realize that she had been having headaches. When Karen told him that her shin had been going numb, he asked her to come in for a lumbar spine MRI. She did and the next day he called and said that there were some abnormalities in the image and that he would like to see Karen and do a brain/cervical MRI. She did and they had the radiologists look at it right away. It was determined that her cancer has spread to her spinal fluid. So it is all along her spinal column and in her brain.
There was only one treatment that the doctors offered as a solution to this, which is high-dose methotrexate. (See also the drugs.com article.) This is intense chemotherapy. They used to use this regimen for cancer patients, but have since developed other chemicals that are less toxic and thus have all but discontinued the use of methotrexate. This condition that Karen has occurs in less than 1% of Hodgkin's patients. This treatment will most likely make her hair fall out and will also be very likely to make her nauseous and will of course lower her immune system, so she will get sick very easily.
They started her on Dexamethasone (a steroid) Friday when they saw her and that relieved nearly all of her symptoms. Her legs still get really itchy at night, which is a side effect of the Hodgkin's disease.
She was scheduled to have started the chemotherapy on Monday, but they had to order the drug so she started yesterday (Tuesday). She began the infusion of the methotrexate at around 8:30pm and it was a 4-hour infusion. After 24 hours are up (so, late tonight/early tomorrow morning) they will begin to administer the antidote at regular intervals. They need to keep her blood slightly alkaline to keep the methotrexate from crystallizing and she will need to stay in the hospital until there is a safe amount of methotrexate in her blood (a low enough level). She should be discharged sometime Friday or Saturday. She will continue to receive one dose of chemo every other week for as long as needed.
We appreciate all of the love and support that people have shown and expressed during this time. We also appreciate your prayers on our behalf. Karen gets tired really easily with visitors and especially with phone calls. I will be answering my cell phone whenever I am not in class and I will also answer Karen's when I'm in the hospital with her. Email is also a good way to stay in contact with me.
I will be updating this blog regularly throughout her treatment.
Update at 3:30pm EDT
I took Karen on a walk around the 12th floor of the hospital, then she got in her wheelchair and we went down to see the gift shop and the cafeteria on the first floor. She's still feeling well and lively.
Update Apr 2 at 9:00am
The doctor just came making her rounds and told Karen that she won't be able to go back to work. Karen disagreed and said she's going to go back next week when she's home from the hospital. Judging from her current condition, I would agree with her that she is well enough to go back to work. We'll just have to see how she does next week.
Update Apr 4 at 11:00am
The doctor just came in and discharged Karen. Hopefully, within an hour or so we'll be headed home. She'll return on the 13th for her next round of Methotrexate.
Oh Keith! I'm glad that you are keeping this updated, but that is too bad about it spreading to her spinal fluid! You two will be in our prayers. Keep us posted--love you both.--Cambria
ReplyDeleteKeith and Karen, we love you both so much! You are in our prayers.
ReplyDeleteI am sorry to hear that. I hope the treatments continue to take away the symptoms. Karen, you are a great inspiration to so many people. We will pray for you guys!
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