For those of you following this thread here's my post I just entered under Radiation. (sorry I have no clue how to put the "links" in. This is also under Radiation titled CK - Ond down, two to go!
It wasn't particularly pleasant but it wasn't absolutely horrible which is what I feared.
One down, two to go!
I’m alive and my head didn’t explode, that’s the good news.
Before the procedure I spoke with Dr. Greenberg. I asked what I might experience. He said most likely nothing! May have some swelling but he did not want to give me meds for that unless absolutely necessary. He also said that a few months out I could loose some hair in the area of the radiation behind my ear. He also spoke briefly about mild facial paralyses which should / could / would resolve itself.
Also spoke with Dr. Bartels. I told him that Wednesday morning I woke up with my “bad†ear feeling totally clogged and having problems hearing. He said if it doesn’t go away to call and make an appointment. I called this morning, got an appointment for next Wednesday since it is getting worse. I don’t believe this has anything to do with the radiation since it started two days prior to radiation.
Now back to the actual CK procedure. It was not the most pleasant experience mainly because of the way they had me positioned on the table with the mask. Thank heaven for Valium! Remember the mask is molded to your face and head with you laying flat on your back looking up towards the ceiling. The radiologist had first set me up that way yesterday but then came back in the room a few minutes later, removed the mask, told me to turn my head slightly to the right then put the mask back on me and screwed it down to the table. Now my chin on the right side is very uncomfortable and my brow bone on the left side is very uncomfortable besides the fact that the entire mask is extremely tight. About the time I thought I couldn’t take it any longer the radiologist came in to tell me the first treatment was over. Thank heaven!
When I went out to the waiting room my husband said I had “cyberknife waffle faceâ€! The mask had actually left impressions all over my face. Truthfully, I’m surprised my chin and brow are not black and blue, that’s how tight and uncomfortable it was. Dr. Greenberg asked me if I watched the whole thing. I told him I couldn’t get my eyes open in the mask. He seemed surprised. Obviously, he’s never had this done! You know doctors should “sample†what their patients experience; just my humble opinion.
As for the actual radiation, I couldn’t feel anything. The machine hummed, clunked, and made other noises but that was it. I took a CD that I knew would play for at least an hour, which was very soft, calming music for me. I laid there, did breathing techniques I’ve learned from yoga classes, and thought of all the great things I’ve enjoyed most in my life. That seemed to work to keep me still for 40 minutes.
On my way out, I asked Dr. Greenberg if I could take aspirin, which he said was fine. The back of my head hurt. Don’t know if that was from how I was positioned on the table or was actually from the CK treatment.
As to how I feel today. I’ve had mild queasiness in my stomach, I think my vision is some what blurry but clears up (spoke with Dr. Greenberg, he said this is probably due to dehydration because the optic nerve was far from where they radiated), the back left side of my head doesn’t really hurt but I’m aware of it (I’m assuming that’s where they radiated) (asked about this also, he said most likely because of the weird position I was in for 40 minutes), and my taste buds are almost non-existent (forgot to ask about this). Nothing has much flavor. Had hot sauce on my scrambled eggs this morning and really couldn’t taste it. So it will be interesting to see how these issues play out after the next two sessions.
I will keep you posted on sessions two and three. Session two is Monday and session three is Tuesday.
Thanks for all your encouraging emails and prayers it was all welcomed.
Karen
