Don’t blink

So much has happened these past 3 weeks, I don’t even know where to start.  Warning this will be a bit lengthy too.  I guess we’ll start where I left off.  I had my 3 weeks off which was amazing.  My attempts to alleviate the severe headache worked but ended up wiping me out for several days.  I also attempted to work full time during this break as that is what I am striving to return to in January. Fortunately, I work for a great organization and can use maxi-flex (working hours and days when I can), earn credit hours , take wellness time and still use the donated leave if need be. I got close to the 80 hour mark but repeat blood draws dragged me down.  But I’m getting there and that is huge (and exciting) as I regain some normalcy in my life.

Week three I had not only my regularly scheduled chemo/immunotherapy treatment but also my 2 month MRI and a follow-up with my doctor.  The MRI was my 6th this year (that I was conscious for) – so they really are non-events for me at this point.  We went up on Thursday to get that completed and stayed the night so we could meet my radiology oncologist face to face and then head over to my infusion treatment.

I’ll go backwards on Friday and start with the infusion treatment.  Since this is about my 30th this year (I will do a countdown for New Years on the exact numbers), it was a quick and easy process.  Brent hung out with me and ganged up with my neighboring chemo patient to pick on me.  When you go as often as I do you see the same people over and over and get to become friends with them – it makes the time go by a lot faster when you get to catch up and hear stories from new faces. Prior to this appointment I took some dilaudid to stave off the headache (but only for one day so I wouldn’t be so tired) and Miralax and Senekot to stave off the side effects from the narcotic.  FYI, it worked and I was able to get away with only one day of heavy drugs and a couple days of the extra medicine to keep things flowing.

So lets hop back a bit.  I met that morning with my radiologist. And if you don’t read these the day they are published, the MRI was December 8th and the results were given to me on the 9th.  The doctor was happy with the results because there was no change.  Change for me isn’t always a positive and at some point I would start to stall out and then reverse course.  We were trying to find the sweet spot and felt that now was that time.  The doctor said I could wait and just keep doing my scans every 2 months and the tumors might not grow back or expand, but the odds of that happening  with the type of cancer I have, is unlikely.  So to keep my sanity, prevent me from stressing out every time I get a headache, spins, or lightheadedness, I opted to just move forward.  And move forward did they ever! I went home that Friday thinking it would be nice if I could squeeze this in before the end of the year, when my new out of pocket calendar for medical expenses starts all over.  But I also figured with the holidays fast approaching it would probably happen in January.  Well I underestimate the speed at which the doctor’s can get together and schedule me in.  On Monday, December 12th, first thing in the morning, I got a call from the neurosurgeon’s office and he wanted to see me that day! Since I live almost 4 hours away, they accommodated me and had me come in the following day. So Tuesday the 13th, I met for the first time ever my neurosurgeon.  He was nice, informative and somewhat caffeinated. I had to see him face to face because you need 2  doctor’s who have established care with you to be able to get Gamma Knife approved.  He asked to see my head (I was wearing a headscarf) and he couldn’t get over what a beautiful head I have, and he has cut on a lot of heads so he knows what is perfect.  Glad I fall into that category?? I guess it’s a good thing since I’ll likely be bald for the rest of my life.  He is very optimistic that I will have a good response to GK considering how well my tumor reacted to the whole brain radiation treatment (WBRT).

So now some fun trivia: You can only get WBRT once, which I got back in February.  It is so strong that if you do it more than once you’ll end up in a zombie state a couple months out from your second treatment.  You can get Gamma Knife multiple times – but they want the spots as small as possible to minimize damage to the brain.  So why did I get WBRT if it is so damaging? Because my tumors were so large and so numerous that Gamma Knife was not an option and would have caused as much harm plus there would be a lot missed.  Brain surgery is still on the table if tumors grow back and are large enough and in the same spots I was treated.

So Tuesday we got everything figured out and that night I get a call from the Gamma Knife nurse telling me I was scheduled to get an MRI (lucky #7) the next day.  Brent and I had arranged to stay in Spokane for the week because they hinted at trying to get me in for the procedure that week.  I asked why I needed another MRI when I had just gotten one 6 days earlier.  Well in that short amount of time the lesions can change size and shape. So on the 14th I got my most updated MRI and then just hung out in Spokane since they now had me scheduled to do Gamma Knife the next day.  So wow – in less than a week I got to meet my new doctor, get an MRI and get treatment.

You all might be wondering what the heck is gamma knife.  It isn’t a surgery but rather a high dose, very focused radiation treatment.  192 lasers focus in on one point saving the brain tissue around it and only attacking the tumor. You are awake during this time and it is an outpatient procedure (for most, me included).  I arrived at 6am, did the typical nurse check in (blood pressure, temp, oxygen levels, etc). I was never hooked up to an IV.  They did give me some sedatives and pain meds as the injecting of lidocaine into my head would sting.  So four stings later, they said your head should be numb enough and proceeded to screw in the halo that would hold my head in place.  Guess what, because I am a natural red head (strawberry blond), I don’t take numbing agents as well as others.  So I could feel them screwing in the halo and they had to stop, add more lidocaine – which stung still, and then wait.  Finally it was numbed enough that the head frame went on.  I thought it ironic that the lidocaine gave me little horns on my forehead before I got my halo.  Guess I have a little bit of devil and angel in me.  Once that was strapped on my head I waited while they finished up the patient before me – they had 3 of us in all that day and I was number 2.  After an hour it was my turn and away I went into the treatment room.   Brent was able to go in with me so he took some great photos.  You lie on a bed and they slide you into the scanner. You are awake and they play your choice of music (I went with classic country) while for 2 hours they zap those pesky tumors. Because I was loaded up on a sedative to calm me and pain pills – I actually slept for at least half of it. When it was all said and done, my radiology oncologist pulled out a drill, turned to my husband and said lefty loosy? righty tighty? and proceeded to unscrew the frame from my head.  They then wrapped gauze tight around my head, gave me a little snack and sent me home. That’s it.  They even said the next day I could return to normal activities and I shouldn’t suffer from any side effects.  Other than being tired as I was still taking pain pills to offset the stinging at the screw sites – I am back to as normal as I probably will be.

So busy week and now I will march forward with chemo treatments every 3 weeks, and scans (both PET and MRI) every 3 months.  Although I do have an MRI scheduled in 6 weeks – gamma knife does not give immediate results so they need time for the radiation to show the impacts to the treatment sight.  They might see something in 6 weeks but it will be more evident in 6 months.

I hope everyone has a wonderful holiday season.  Enjoy your family, friends, health and happiness.