My baseline blood work all came back good so I was given the go ahead to start the chemo yesterday. Knowing that is probably not your every day kind of drug I asked my local pharmacy to pre-order which they promised that they would do. However, when we went to pick it up they admitted that they had forgotten to order it and we then had to drive across town in rush hour traffic. This was not a good start given I was already apprehensive about the whole chemo thing.
It was a little anticlimactic when I took the anti-nausea pill then 30 minutes later the chemo pill, then off bed. I woke as usual this morning with no ill effects which is great.
The big thing at the moment is not being able to eat as every time I try it brings on a seizure. I am living off meal replacement drinks and is driving me crazy.
I put a call into my neurologist who said that before increasing dosage or changing my anti-seizure medication he needed to check the Lamictal levels in my blood. In spite of him writing "STAT" on the orders the test results are not "STATable" and so I have to wait.
Please eat a big meal for me tonight:)
:( Eating and teeth-brushing? Well now, that is no fun! Hope that the anti-seizure meds can be ramped up to a level that works well and quickly.
ReplyDeleteRats...eating too? I think about you so often and am wishing the very best for you and hope that the treatments knock the $$$###^^ on its bloody ass. Amy D.
ReplyDeleteKaty - Soo sorry to hear you are having more problems. I believe anti-seizure medications take a couple weeks to take effect, doctors will not change the dose too quickly. The Chemo will probably suppress your appetite anyway. Try to be patient and ease into your new normal. This is a very trying time for you and your family. Make time to relax. Best Wishes - Ed
ReplyDeleteEd - you are right, I do need to ease into my new normal. For a while my new normal was getting fit and strong riding horses and eating properly. Now it is utterly different. I had not thought about the anti-seizure meds taking such a long time to take effect, thank you for pointing that out. I must learn not to be my old self of wanting everything NOW and moving on my time frame. The seizures are certainly milder at least.
ReplyDeleteHi Katy,
ReplyDeleteNick Cioe again. It is likely that your experience in the next few months will fluctuate like the stock market the last few years (though hopefully with more updside :-) The point it, when you know (and accept that) something is going to be wild, the fluctuation isn't as traumatic. This is easier said than done, but do what you can to get to that place.
Second, living in a place of acceptance of inconsistency/unexpectedness is torture if you can't be present in the moments of each day. You seem to have that ability given your description of experiencing the seizures. It is VERY important that you make every effort to experience as many minutes of every day with the same focus as you did during the seizures. There is some excellent work by John Kabat-Zinn about mindfulness. He created the first stress-reduction clinic at UMass as a compliment to traditional medicine. He has several books and interactive CDs (meditation type stuff) that can be very helpful. It may allow you to, in time, compartmentalize your thinking about the diagnosis and prognosis so you can still experience the glory of life.
Finally, more likely than not you are going to live a minimum of 5+ years. With two small kids, that doesn't seem like a long time, but it is. How you deal with this will model and teach them more than you or they will ever know. This diagnosis has blessed you with the ability to create special children (not that they wouldn't have already been special :-)
I'm sorry if this seems to be out of left field. Good luck; you'll be fine!
Nick
you poor thing. i could live without brushing my teeth (not sure how much todd would enjoy that) but not eating is torture. i know it's not even close to being the same, but i remember when i got my teeth out in college... i was in so much pain but i was STARVING. my sister came into the living room eating nachos and i started crying. hopefully you'll be eating REAL food (and gummy bears) again VERY soon. you remaing in my thoughts and prayers. xo judi
ReplyDeleteclarification... i didn't get my TEETH out... i got my TONSILS out. :) LOL.
ReplyDelete