When The Big “C” Knocks On The Door — What’s Next?

This week is a fairly quiet week as far as cancer treatment goes.  It is so really odd to think my life is centered around cancer treatments.  In fact, I am surprised that this weekend is Memorial Day weekend.  I’m still stuck in February when I got this awful diagnosis for feeling healthy, and best of all, I still feel healthy.  Anyway, it doesn’t matter.  It is almost June, and these past five months have just flown by.

On a consultation with my oncologist last week, he said that my scans look good.  Everything is stable.  That means these highly aggressive tumors did not grow.  The tumor in the liver that he was worried about being too close to the bile duct was much reduced and not a threat to the bile duct.  I learned that being “stable” is good, even if the tumors are still there—they are not growing or increasing.  Yay, good news!

The METS in my brain (tumors) need to have direct radiation (which is so much better than “whole brain radiation”).  It is a direct hit on the tumor and there should be no terrible side effects. Everything I have read about this procedure sounds good—not painful, very effective for METS, and usually no bad side effects. 

Monday, May 18, I met with the nurse practitioner in the Radiation Oncology group at MD Anderson Cancer Center.  We took a look at my brain MRI.  There they were—two funny looking little things that didn’t belong sitting in my brain.  Take a look yourself at the big one in my brain.  Before you look at that, I want you to know that I really don’t have a carrot nose like a snowman.  How did they make my nose look like a carrot?  I mean, come on, I know I don’t have a tiny petite nose, but this carrot that shows up on this MRI is most interesting.  Maybe it only looks like a carrot if you look at me from above my head down—I will remember not to stand next to any extremely tall people.  Not only that, I also have frog eyes!  I remember as a kid being told what big eyes I had, but they sure didn’t look like frog eyes.

Back the serious business of brain metastasis. This image shows the large tumor which is kind of in the middle of my head.  Then there is another smaller one in the back.  The radiologist wants to zap them both.

The last blog I wrote said the doctor wanted to do a Gamma Knife radiation.  I found out the term, “Gamma Knife,” is more of a trade name, like “Coca-Cola.”  Apparently, I’m getting the “Pepsi-Cola” treatment.  There are a couple distinctions between the what I previously read and what they do at MD Anderson Cancer Center: 1) Instead of calling it “Gamma Knife” it is called, “Stereotactic Radiosurgery” (which sounds a whole lot fancier; and 2) they don’t clamp a metal frame to my face and screw bolts into my head to hold it in place.  Sounds a bit barbaric, doesn’t it?  It is done so you cannot move your head while these radiation rays go into your head—that would be bad to radiate somewhere that should not be radiated.  Instead, they use a mesh mask.  Since this has not happened yet, the best I can tell you is that this mesh is placed on my face.  I think it is a wet soft mesh, and the technicians mold it around my face and the sides and top of my head.  Because it is for brain radiation, it will only cover around my face.  The mesh will harden so that it will fit tightly on my head, and then the back of the mesh will be attached to the radiation machine so I cannot move my head during the radiation.

You are probably wondering how this radiation works.  The same day I get the mask fitting, they will also do another brain MRI.  Then there is a medical physicist (smart guy) will do mathematical calculations of exactly where the beam goes.  My understanding is that is still a gamma ray, but I have not confirmed that yet.  The beam is low powered so that it can go through the brain without damaging it.  Several of these beams will come from different directions and they all land in one spot—the tumor.  Since several beams will land in one spot, those will do some damage, but the damage will be done just to the tumor.  The goal is that the radiation will disrupt the DNA in the tumor to render it unable to grow or to multiply.

One of my sons warned me about gamma rays.  Apparently that is how the Incredible Hulk became the Incredible Hulk.  He got a big dose of gamma rays!  Fortunately, I don’t think I will get that concentration of gamma rays. But, just in case, my son suggested I wear Spandex so my clothes don’t rip apart should I become Hulk-like.   I just don’t look good in green!

Back to the real world of Stereotactic Radiosurgery.  Here is how MD Anderson describes the procedure:

Stereotactic radiosurgery (SRS) is a non-invasive treatment that uses dozens of tiny radiation beams to accurately target brain tumors with a single high dose of radiation. Despite its name, SRS is not a surgical procedure and does not require an incision or anesthesia. However, the radiation beams are as small and precise as a scalpel.

A computer uses three-dimensional images from MRI and CT scans to determine the exact dimensions of the tumor. It then calculates the radiation dose to be administered by nearly 200 radiation beams. This allows radio-surgeons to target the tumor without affecting delicate structures nearby. SRS can treat multiple lesions in a single procedure. 

Because stereotactic radiosurgery is typically done in just one outpatient session, patients are spared from multiple radiation treatments and can return to a normal routine within a few days. . . Stereotactic radiosurgery is effective for treating tumors in small areas in the head and neck that cannot be reached by surgery.  It also can be used on patients who cannot tolerate surgery or have had previous radiation therapy to the brain. 

 I have my MRI next Wednesday, May 27, along with the mask fitting (which is called brain mapping).  The actual radiation will most likely be the following Wednesday, June 3^rd.  I was told that the medical physicist and the radiation oncologist will work together mapping the exact coordinates for this procedure, and it’s a bit of work, and therefore, a week until the actual radiation.  I also found out that radiation of brain takes precedence over other areas of the body, so they do not wait a long time to do this procedure after the mapping is complete.

After the radiosurgery is completed, I will have follow-up brain MRIs for the rest of my life to make sure that the procedure has done what needs to be doing, looking for any additional METS that did not show up before, and also to make sure there is to further damage to the brain.  These MRIs will be farther apart as time goes on as they see progress and no additional METS.

I will have immunotherapy infusions every four weeks starting June 1^st.  Approximately 10 weeks from then, I will have scans to see how all of this is working, and if any changes are necessary. Once again, I cannot embed the YouTube video. It’s a short one about how immunotherapy works. Click on the link to watch the video.

https://youtu.be/wZeuIm_7INc?si=M7FopFsnppHaLz1Y

My new normal is coming into play.  I have no idea how I will feel and respond to these two new therapies.  I am walking into another unknown.  

I hope these blogs not only tell you about my cancer journey, but also inform you about how these treatments work. Starting this past February, I learned new words, new processes, new everything. I had no idea how much I didn’t know about cancer treatment.

The only thing I do know is that God is good all the time.  Did you know that words, “Do not fear,” are in the bible 365 times?  That’s one for every day of the year.  Some sources say that the phrase is used only 222 times in the bible.  The number doesn’t really matter to me.  “Do not fear,” “fear not,” “do not be afraid,” or any other derivatives of this phrase is said so often throughout scripture tells me this is very important. 

I am so amazed that my fear level of this whole journey is pretty low.  Maybe it is because I still feel good.  Even days where I don’t feel as good as I normally do, I don’t fear.  Once again, God has given me “peace that passes understanding.”  I am a fighter, and I will continue to fight this disease with all my might.  In the meantime, I will live my life to the fullest.  I have big plans for this summer, and I am trusting that these plans will come to be.

Keep praying!  I also believe that your prayers have been answered and have gotten me through these many weeks of treatments with barely any side effects or serious setbacks.  I have heard from so many people that they are praying for me.  I didn’t even know I had so many friends!  Thank you for your love and care, and especially for your prayers.