Post gamma knife

Happy cancerversary to my brave strong cancer fighting warrior!! A year ago we found out he had progressed to stage 4 and this year has not come without its battles!! 

Well it has almost been an entire week since Bennie has had Gamma Knife.  The day after Gamma knife Bennie was pretty sore and swollen.  He has been pretty tired, and maybe even some short term memory issues probably due to some irritation of what they treated.  All in all not too too bad..... I mean we haven't had to go back to the hospital so that's good 😄!!!! We saw his regular oncologist the following day and they said his chemo is going well via the Bloodwork...his Liver isn't freaking out!  Bennie still gets nauseous at times and is tired, but chemo is chemo....not fun!!!  Colby ended up with some virus on Friday night that had us worried he could have appendicitis, but he pulled through and didnt have to go to the hospital for that.  But I did have to go to the hospital for my sweet mother.  She had a kidney infection and stone that turned on her, and she got a resistant bacteria that wouldn't go away.  She had 103 fever for an entire week, but thankfully was able to come home today.  She will be at home for 2 weeks getting IV antibiotics.  Guess who gets to practice more nursing?  A nursing college should give me an honorary degree.  Anyone?   It seems like life hasn't stopped sucker punching us for 6 entire weeks!!!!!!  Bennie and I are hoping to get back into a routine of some sorts this week and for the next 3 weeks or so.  He is starting to go back to work this week, and we don't have an appointment at md Anderson for 3 weeks.  He will go for a brain mri around the first of February to see how gamma knife treated him.  We are hoping they treated the right side..... Because the opposite side of his head has been a little numb and his hair is hurting on the wrong side.  Hmmm we will see.  The next couple of weeks hopefully will be "normal" as we will be celebrating Colby's 4th birthday this weekend with family, and just cherishing our time together!! 

 

I can't believe he is four years old!!!!!

Edit:  I was about to publish this only to hear Emmi getting sick in her bed..... PLEASE PRAY Bennie doesn't get the stomach virus... He and I are the only ones left now 😥. And pray Emmi feels better too .... Poor girl.

Gamma Knife

We finally heard from the Radiation Oncologist that Bennie would be doing Gamma Knife.  We had a couple of days to prepare for that event.  I connected beforehand with some amazing patients who have previously gone through this, and they were kind enough to give us the 411 so we would be prepared!!!! So we decided to give back and give a very detailed step by step process for those that would like to know what the gamma knife experience is like!!

First off we had to go to a nurses visit and bloodwork yesterday (the day before gamma knife).  Bennie had to sign consents, and also get paperwork on what to do and what not to do the day of and after gamma knife.  Then they threw a little curve ball and told us that Bennie had to go upstairs to get an IV put in.  The Dr.'s get upset if the nurses can't get the IV started that day, because they have to end up canceling the detailed list of appointments and specially reserved gamma knife machine all because of an IV.  So, they make him get it the day before the procedure to make sure he is ready to go.  He got the IV and we went on home to explain to the kids why he had this object on his arm.  They were cool with it!!!

Next up is GAMMA KNIFE DAY!!!!

First thing Bennie did was change into some scrubs and then he went into a room with his nurse for the head frame placement.  I couldn't go in, because there is no room (so I made his nurse take the pics for us!)

Here is a pic of the screws that they use to screw the headframe into the skull.

 

 

 

First the Dr. and Nurse Practiciioner started fitting the headframe and marking with a marker on Bennie's head where the screws would go.  Then they started injecting a local anesthetic into the spots.  Bennie said it felt like a bee sting when each injection started, but quickly subsided.  All four spots that the pins would be screwed into his head were numbed with the medication.

 

 



Once the spots were numbed up Bennie decided to call it a day, and he left to go play golf.  Just kidding, he wishes.  Next up.... The Dr.'s started the hard part of getting the pins started by hand tightening them into Bennie's head.  Bennie said at this point all he could feel was pressure.  As they started screwing it in tighter Bennie could tell some anesthetic was not strong enough in the back part of his head, and so the Dr. just injected more anesthetic to make it comfortable.   

 

 

After the frame was tightened enough by hand, the wrenches were pulled out to really make sure it was tightly in place and not going to move!!!!!

 

 

 

Bennie said the wrenches caused a huge amount of pressure, and it felt like someone had put his head in a vice and it was about to explode.  But after about 5ish minutes it started equalizing and it was just a fair amount of pressure.  Next, the Dr.'s started measuring with different hats to make sure that Bennie could fit in the MRI and gamma knife machine with his headframe in place. 

 

 

This picture is of a hat that is used to make sure your head will fit in the gamma knife machine, and sometimes the length of the screws will need to be replaced depending on if you fit.

 

This picture is of a hat that a physicist comes in to measure distances so they can come up with a treatment plan with the radiation oncologist. 

(The long thing sticking out at the top is not a screw...its a ruler!)

 

And this is what the Bennie had to wear into the MRI machine.  This is worn as a coordinate mapping system so that Bennie's Dr. can look at the MRI and program the exact areas where the radiation will go.    The reason the pins have to be so tight is because the headframe cannot move the entire day!!! Everything is based on the positioning of this headframe, and if it even moves a slight millimeter then the radiation will not be put in the right spot!!!!  The radiation beams are precise down to 3/10 of a millimeter.  We are lucky to have one of these machines in our town, as there are only about 200 in the world (and MD Anderson ones one of them)!! The man that went before Bennie was from Canada!!

 

After all of this Bennie went into the MRI machine for a shorter amount of time than normal.  A normal brain MRI usually takes about an hour, however this one took about 30 minutes.  Bennie said the sound is about 10 times louder with the frame on, because it has an echoing effect.  Also, there is a smaller tube that your head goes into with the frame, and it all goes into the MRI machine.  Then Bennie was taken to a hospital room to wait for his radiation oncologist to plan out the radiation treatment based on his MRI.  It usually takes a couple of hours, so Bennie got to rest and eat breakfast (which proved to be difficult with the headframe on)  For those that would like to lose weight this may be an alternative treatment to working out...albeit a more painful one. 

 

 

 

 Here is my handsome husband patiently waiting for the Dr. to program the radiation machine.  During our wait time we renewed our vows, and he knocked me out when he was supposed to kiss the bride.  Just kidding we just talked and joked, and I didn't try and kiss him...... the nurses are far to nosy.

 

So we waited for almost 3 hours before the nurse came to bring him back down to the gamma knife area, because his Dr.'s were finishing up the treatment plan.  We got the good news that there were no new tumors in the brain since surgery, and we were just going to treat the surgical bed area.  WHEW WHAT A RELIEF!!!!!!!!!!!  The nurse said the radiation treatment would take 95 minutes.  Also, the Dr. told Bennie he could lose a patch of his hair where the treatment is, and it may or may not grow back.

 

They took Bennie into the gamma knife room and got him locked into position onto the "treatment couch".  Bennie disagrees with their term of treatment couch.....it feels like a cheap futon couch from your college days.   Then the physicist and radiation nurse make sure the headframe will fit in the machine with the matching coordinates from the treatment plan.  

 

Here is the nurse making sure his frame fits.  They swing that red arm around his frame 360 degrees to make sure it doesn't hit anything.

 

It didn't fit, so they had to take him back out and reprogram some parts of the treatment plan..... which took another 30 minutes.  We chatted a bit while they did that, and then they took him back in for take 2.

 

 

He is all ready to go!  The doors open up behind his head and the table slides back into the radiation beams.  The table slides back and forth and up and down while beams of radiation are put into very precise spots over 95 minutes.  Luckily, two weeks ago the radiation machine's source code was updated which cuts treatment times in half!!!!! Otherwise, Bennie may have been in the machine for 4 hours prior to that update (that would be really really hard to stay still that long; however they do have a pause button and have the ability to let you walk around if you get too restless). Bennie got to listen to music (you can pick out any station on Pandora), and try to sleep.  He was getting very impatient towards the end and called to the nurse HOW MUCH LONGER!!! His nurse said, "You have one minute!"  Bennie was thankful, and they took him out and then the Dr. removed the headframe.  Bennie was surprised to feel that the same pressure to put on the headframe was present when they were taking it off!  But it was quickly over after the pressure equalized in about 5 minutes..... although he still felt like he was wearing the headframe for an hour or so.  They moved us to the same room where Bennie waited before, and he got to eat a little late lunch and rest for an hour to make sure he was good to be released. 

 

Here is Bennie waiting to go home, and his headframe is gone!! They wouldn't let us take it home because it costs 75,000 dollars. 

 

 

They gave him a steroid in his IV to prevent any brain swelling that could occur, and gave us our discharge papers.  The pin hole sites were oozing Neosporin and the local anesthetic that had been injected earlier.  They gave us gauze to catch the oozing for our way home.  He will sleep elevated for the first couple of nights and swelling around the pin hole sites is common.  We will see tomorrow how he is feeling!!! We are both glad that is over, and he has one more cancer treatment under his belt.  Hopefully this will be IT for a long long time.  His next brain MRI will be in about a month to check on how everything is healing.  He is still taking Temodar (oral chemo) every night, and will keep doing that for 4 more weeks then he will take a two week break.  Then he will restart that cycle again as long as it seems to be working!  So far side effects are minimal with the exception of fatigue, some nausea around the time he gets hungry, and did I say FATIGUE?  He's been through a lot the last 5 weeks, but HE IS A TROOPER. 

 

 

 

 

 

 

 

 

 



 



 

 

 



Crazy Times

Sorry for the lack of updates.  It has been a nut house around here!!!  I'll begin with the week after I left off.  Bennie's PET Scan results from the body were great!  No tumors were found within the body, and so at this point we are solely focusing on keeping the brain clear.  We met with his oncologist who recommended that Bennie begin taking a chemo called Temodar.  It is one of the only chemos that crosses the blood brain barrier.  Temodar is not FDA approved for the treatment of melanoma in the brain, but essentially it is for other brain cancers so it could be useful in treating melanoma as well.  It's not a great option, but it is something that has worked for others for awhile.  So we will try it!! Temodar is a pill that Bennie will take each evening, about 3 hours after dinner.  He has to take anti nausea medicine beforehand to keep from getting sick.  The side effects aren't as bad as the chemo he was taking last summer, but could make him more sick to his stomach and make him tired.  His oncologist is not recommending any other type of treatments for his body right now, and he will get another scan in a couple of months to keep an eye out in the body for tumors to pop up.  So Bennie was going to start taking that medicine but his liver levels were sky high!! So much so that the Dr. thought that the machine was broken or made an error.  It was determined that Bennie's liver didn't like all the Tylenol after surgery, and he was to lay off Tylenol for a week so he could have blood retested to see if it would be safe to start chemo then.  We were pretty excited that he wouldn't have to start chemo until after Christmas!! Wahoo!  But then the very next day Emmi got a fever of 103.  I rushed her to the urgent care to try and get medicine to prevent her from spreading it to Bennie.  She tested negative for flu and strep, but they said it could still be too early to tell.  Emmi had fever for the next 4 days.  Then Christmas Eve comes along and Emmi is beginning to take a turn for the better!!! YAY!! But then Bennie starts coughing, and I feel his forehead and he is burning up!! NOOO!! NOT CHRISTMAS!!! I was so fearful he would have to go back to the hospital.  He had a fever of 101.... and he wasn't supposed to have Tylenol or MOTRIN!!! Well, I gave him a couple anyways so we could at least enjoy Christmas.  The morning after Christmas I took him to the urgent care center and he tested positive for the flu and strep (which means little Emmi had it as well... I just took her to early).  So he got a shot, antibiotics to take for 7 days, Tamiflu, and cough syrup.  The next day we had to go down to MD Anderson to meet his radiation oncologist.  She really didn't have a decision about what type of radiation to do (whole brain or gamma knife) because his Dr. (neurologist) is on Christmas vacation for the next week.  She went ahead and put him on the schedule for the end of January for gamma knife....because the schedule was filling up quickly.  So within the next few days we should have a solid answer on what type of radiation Bennie will be getting on the brain.  Also, his liver levels have evened out and he took his first Temodar pill last night.  So far so good.... no nausea or vomiting.....but it may be more of a cumulative effect.  The more meds that get in your system the worse you feel.  So, we are praying for no side effects from this drug.  We are also praying that the Dr.'s are able to choose the appropriate type of radiation for Bennie to have, and that it will be easy on him.  And we are also praying that the brain is still clear from his last brain mri after surgery!!!!!!!  It's been a crazy month, and we are tired!!!!!!  Colby ended up with the flu this week, but got over it a little quicker because I got some Tamiflu for him beforehand!! WE are HOPING THE NEXT MONTH IS EASIER!! We need a little bit of a break!!!!