We go out to eat Chinese food …. My fortune is that I will apply everything that I am now learning. Marilyn’s is that she has to be patient. I am not sure if I had ever seen one that made sense and here it is 2 that hit the nail on the head. Wow!!!
Dec 8
Call form Dr Nunn’s office – go to see other cyberknife on Tuesday --- day after today … ok – this is good.
No call from Dr heaton’s office
Dec 9
To st john’s cyberknife … meet with dr Frederick willison. He wants full story from birth to today. he looks at first mri and notes the size, etc ….. rather than to write it all out again – here is the letter that I sent to the folks that I email to keep them up to date …
I saw a new doctor yesterday. This would be Dr,. Willison of St. John hospital’s cyber knife team – Tulsa, Ok. He did a very good and thorough job of explaining the entire process to Marilyn and I.
steps:
1. consult with he and his group – done. He said that the tumor is definitely in the stem he has to be very careful to not zap this area too much. There will be spill over into the stem and we need to have a plan for this and he has to plan to minimize this. He said that the plan devised by the other doctor was good. (I had a screen print from the plan that was to go to the referral that she was sending me to. Later he said that he had been a partner in a practice with the other dr and that she was very talented….. but understood that I had an issue with the communications. At this time- Tuesday, we had not even heard back form her. I read into his speeches that I can not self medicate ---- no sticking my head in a microwave for 10 minutes with the power on high – this may not give the same results.
2. He is setting me up to talk to a neuron surgeon. I had heard this from the other dr and not what I wanted to hear …. He showed that this is part of his check list of required things. This is step 2 – not to be done as an after thought. He said that I can hear him explain the benefits of surgery so I can make an informed decision. I said that I had my mind made up … then he added that in case this goes south on us …. I will have be an existing patient for a very good neuron surgeon rather than the hospital trying to find a doctor on a rush basis. Immediate response from his group vs waiting for an appointment. This makes sense. He also added that he may sign off on the treatment plan for a second set of eyes. He needs a car payment …I can see him now ---- a sign on the street corner – will work for Lexus car payment…... I will never know if this is what the other dr was trying to do? Marilyn says that she thinks it was?
??
3. the software between the 2 hospitals are not the same --- so I get to do the mask making, CT scan, and MRI over again …. I get to face the spirit sucking tunnel of doom (MRI). They set this up for Dec 18. at least there is valium!!!!!!
4. the doctor will take about a week to make the plan. Hopefully he is working Christmas week. I had hoped that I get treatment during the week of Christmas so I could have that long weekend to help rest. News year week, I only work 3 days ….. so I am hoping to hit this time frame.
5. treat …. 3 to 5 treatments --- he will tell us after the planning. Side affects were minimized. He nor the nurse refused to admit that the face mask leaves the patient with onion sack face…… the mask fits tight and leaves the impressions of the fibers in the skin…. As the mesh is about like an onion sack …. This affect is referred to onion sack face…. And it takes hours to go away. So going out to eat afterwards can be very awkward.
The nurse offered to have the radiation administered in a pattern so I can have a unique hair design --- some will fall out where it beams through. At least no one commented about there being little hair to loose ----- other than my wife (*^%&.
I have been reading the literature that they sent home with us … not one paper refers to a special diet of hamburgers, fries, steaks, and peach cobbler. I still contend that if a kid gets ice cream after having the tonsils removed, getting brain bugger zapped should deserve some special foods?
At least this dr did not make comments about eating well balanced meals ….
I do solicit your help ….. how can I describe this entire process to make it sound better? Think about it …. If I went surgery, I could say yes, I had a hole drilled here, they shoved my brain to the side and I was under the knife for 6 to 12 hours …. Sounds pretty macho right?
If I went gamma knife, I could state that they screwed a metal plate to my face. They then did an mri and Ct scan while I was awake and the plate. Then they attached the plate to a big metal helmet and the radiation poured in through the holes in the helmet.
And I get to describe my treatment as this ---- they invited me down to the hospital to listen to some music – on a paid day off…. I am to bring my favorite cd. They will lay me on fancy bed . I can experience a robot move around and work as I listen to the music. The robot costs $5 million? And I am to be on some fine / legal drugs that will help me relax while they do this ….if I wear bell bottoms and a tie dye shirt, I can swear I went to a hippie reunion?
?? I do not even have to put on a backless hospital gown at any time. I have only onion sack face to tell any grandchildren about and gripe as I did not get ice cream…. This does not even sound like a good story to be able to brag about around the camp fire in future years.
How would you like to tell your boss that you need time off to lie around, take some drugs, and listen to a little Dylan … I have to think of how I can word this.
My CD will Bob Dylan.
I am in a better mood!
Just to give you an update and to say thanks for the prayers/good wishes.
carter
ps…. When we got home on Tuesday, we found a phone message from the original cyberknife dr ‘s office stating that they had set up an appointment for me to see a surgeon. Marilyn let them know that we were going elsewhere…
marilyn is using the patience for me fortune cookie !!!!!!!!!!!!!!!!!!!
I did hear her say for the first time that she too was angry with Dr hawkins for not checking further as we are both well aware by now, the tumor is of a significant size.
dec 10
I share my feelings so others my gain soemthing and to umload my mind --- if the cookie says that i am to learn form everything – maybe others will also learn?
I can at least present the info. Just like phoenix mary did on the support web site. I wrote to her yesterday on her string of posts. She is having balance problems ---- I hope that his is not for me. But this lady deserves to get better. She has been my motivation and anchor that it will all work … but I will not wear the pirate suit that she describes --- not in public with a pair of capris and pirate shirt … sorry…
Got positive feedback from my letter out – people said that I had some humor again .. missing for several days. I had to give credit to many of the terms to former posts on the site.
Get to thinking about the dizziness and headaches… I never used to have headaches --- is it being sensitive – my imagination? But it is there!!!! The dizziness has been there – just associated with the blood pressure – not an AN.
Then I get an email that helps to point me the top neuron person in OKC … they can get me in through a relative if I wish to. This person does not write often so I am feeling good to see the note. I read the entire string of emails that are attached and here she is writing to tell the other person that if the cyberknife slips – I will die – then yikes. Here she is a nurse, writing to a medical researcher and this is there. My nerves are crushed for a moment. I now have a headache!!!! I forward it to marilyn and she reads it --- we talk and she puts me in a good mood --- she refers to the nurse’s bedside manner being equal to others that I had seen lately. I laugh and life goes on. The email was meant with love and crushed me!
I know wait for the appointment to be set up with the neuron dr and for the date to have the mri and cat CT redone. The trip continues …..
I am struggling with the idea of getting back to weight watchers as I have gained 14 pound of the 37 lost … stress is my excuse. I have to get my mind around this and get back on their program.
By this time- I hope that you are not bored to tears – this is dedicated to my heroes – the group that visits the site. The only thing that helps more is my buddies – baby bear and ugly bear -imaginary friends i balme my goofs on life ... my wife thinks that imam nuts?-- topped by my sweetie of over 35 years – to marilyn! Thanks to all.
Life is still good, I just have to remember that …. I like to deer hunt on 80 acres that we have had for 10 years. I have a daughter that is good. And I have marilyn.!!!!
ibet that i never get this story on the success list of the cyberknife support site!!!!!!!
