Share. Connect. Love.

Not Today.

What do we say to cancer?

Latest journal entry

Posted 2019-12-05T22:01:00Z

Radiation incoming

I'm a bit anxious.  Not in a bad way, but I'm ready for the next step. I've had a taste of life outside of treatment and I'm eager for more.  Radiation has been planned, it was (unsurprisingly) a process and now I'm waiting for it to begin though thankfully without the fear of chemo or surgery as the side effects aren't too bad. Also, since diagnosis, I've tried multiple times to join clinical trials because I want this experience to be useful beyond myself, but the prior three didn't work out for various reasons.  For radiation though, I'm in. 

The treatment center is in Somerset, New Jersey, which is about 30 miles and 2 hours of public transport and Ubers away.  Radiation is done 5x/week, Monday - Friday, for 5 weeks and a total of 25 treatments.  I start on Tuesday, December 17th, and will be finished around January 22nd.  The time and monetary cost of the commute makes it more reasonable to stay near the center, so I will have an extended stay hotel room during the work week for this process.  I'll return to Brooklyn for the weekends, and they are closed on Christmas day and New Years day, but otherwise I'll be spending a lot of time in small town Jersey.  Rutgers university is the most notable nearby feature and it does have a classic east coast look, maybe I'll make friends with other patients at the hotel and we can go check out the local college bar scene.  I've honed my pool game in the past year and now that my arm is nearly fully functional again after surgery I'm itching to use the skills.  I don't know yet how I will spend the holidays, I'll have too short a break from radiation to travel, but I have a few friends who are determined to figure something out. 

I had an initial planning visit and CT scan a week ago so the team can prepare my treatment plan.  They made me a custom "cradle" which is like the plank EMTs put people on but molded to my body with my arm raised above my head.  To make this they filled a large flat bag with a mix of chemicals, had me lay on it, and then taped the sides up around me while it slowly solidified.  Then they took some measurements and tattooed tiny 4 dots on my body, on my sternum and ribs, to indicate the treatment area.  I was given a soft robe to wear and sat around a lot with other patients waiting for our turn during each step.  It's a different mix of people, children for one.  The breast cancer center doesn't really have kids.  It's hard seeing them so young, hairless, with parents who look tired while putting on a brave face. 

Radiation is a localized treatment, unlike chemotherapy which is systemic, and will be focused on my left chest and armpit.  The goal is to kill any wandering cancer deposits which chemo failed to address and were too small to show in imaging or be found during surgery.  Oncologists work with the assumption that every post surgery cancer patient still has microscopically small "mini metastases", cancer cells which have traveled around.  Without all pillars of treatment, these are capable of becoming "major metastases".  Where these cells first travel from the main tumor is predictable - the lymph nodes, our body's drainage system, and chest wall.  Since they found a 4 mm tumor in one of my lymph nodes in surgery, they solidified the view that localized radiation to my chest would reduce my long term chance of recurrence. This is why when my breast surgeon sat next to my bed post-surgery and told me I was "cancer free", I side-eyed her thinking "you don't treat me like I am though", so it didn’t really land that the tumors were gone.  Being past radiation and out of active treatment is what will land emotionally with me.  

I was sent to a new doctor at Memorial Sloan Kettering, a radiation oncologist.  He holds a high up administrative position in addition to his medical role and stands out as a leader personality type to me, I like him.  He is also the one running a clinical trial using proton beam radiation therapy on breast cancer patients.  This form of radiation is known to be as effective against cancer as traditional radiation, but it may be less damaging to the healthy tissue and that is what the study is evaluating.  This is important for a patient like myself with breast cancer on the left side since the area around my heart, in addition to my lungs, will be irradiated.  Chemotherapy also takes a toll on one's heart, so long term risk of heart failure is something I need to be wary of.  Proton beams are suspected to do less damage but are very expensive so insurance companies do not usually approve of their use since there is no added efficacy for cancer and the evidence as of right now is inconclusive as to reduced complications.  The clinical trial is looking at just that.  I had a 50/50 chance of being assigned to traditional radiation or proton beam, and finally I won a gamble instead of losing. When it comes to rolling the dice on your long term survival rate, every method to weigh the roll in your favor helps, and I'll gladly stay in New Jersey for the chance that protons keep my heart healthy.  There is one proton beam center in Manhattan, but it recently opened and clinical trials are not allowed to operate there until they have a six month track record of quality care and data.  While traditional radiation isn't cheap, protons are excessively expensive, thus the insurance reluctance.  *Side note on cost at the bottom

As to why protons are safe, I'm first going to go into how radiation works a bit.  It's confusing because the word "photon" aka traditional radiation is so close to the word "proton", so pay attention.  The electrically charged beam of photons (x-rays, gamma rays) or particles, such as protons, has enough energy to strip atoms of their electrons, either directly killing the cell or damaging its DNA enough that it dies off later.  Cancer cells are unable to repair themselves and the body's cell disposal process cleans their remains away, while healthy cells repair and survive.  The types of beams that can do this are referred to as ionizing radiation since removing a negatively charged electron ionizes the atom.  Examples of non-ionizing radiation would be radio waves and also notably - microwaves. They do not have enough energy to strip atoms of electrons and that’s why we are not as afraid of them as x-ray machines.  They do ruin food's texture but that's a different issue.  Within the category of ionizing radiation, two main treatment forms exist - traditional photon radiation and proton beam radiation (a type of particle beam radiation).  This beam of particles, instead of photons, releases its energy at a controllable depth.  Photons are releasing energy as they travel through the tissue in front of the intended target, through the target, through the chest wall and out of your body, effectively doing damage along the entire path.  For reasons above my understanding, despite a very smart theoretical physicist friend of mine trying to explain while using terms like "wave function", scientists are able to direct how far the proton beam goes and it does not pass the chest wall.  Since that is the barrier to my heart, this is good.  At least, we think it should be better… hopefully my participation in this trial pays off and we find that to be true. 

I think that more than covers radiation for now.  Outside of the cancer topic, life has been really good lately.  I went with Max to see Tool, a band I've wanted to see live for years and they happened to be playing at Barclays, which I can see from my window.  Abe got his citizenship after moving to the US from Jordan 16 years ago are we are all very happy for him.  Sadly, both Paul and April moved out of state, to Vermont and North Carolina, respectively.  Well, sad for me, but they have exciting new chapters beginning and I'll enjoy visiting at least.  I had Thanksgiving dinner on Staten Island with Christine, at the home of the officially declared Brisket King of New York, a friend who owns a BBQ restaurant.  Everything was delicious and there was even a tiny adorable puppy to play with.  Work and my side business are both going great, I'm chipping away at tasks more efficiently now.  It's taking me a bit to get in the swing of things, but I consistently feel proud of what I'm creating.  I've also started a writing project on how Dan Carlin's history podcast on WWI helped me during some difficult days back in April while I was being diagnosed and throughout the chemo process.  Maybe if I'm lucky I can get him to read it one day. 

 

*Each administration of this treatment is $8,000. I have 25 of them.  That $200k price tag doesn’t even include the imaging, personalized medical supplies required, or weekly physician visits ($700 a pop).  This is before the contractual write off, since the insurance company is paying because I was accepted into the trial.  Had I not been, this would be out of pocket or not offered to me.  My out of pocket will start up again next year when my deductible resets, they are giving me an adjusted deal of $3200 for patient responsibility.  Could be so much worse, but the cost of cancer always shocks me.  My surgery was over $100k.  Chemo was $7k per visit with another $7k shot the day after.  By the end of this, my medical bills for the treatment of breast cancer will total about $650k.  My out of pocket will hover around $20k with another $60k in lost wages/bonus.  This is one of the many factors driving my further investment into myself and my education.  I don't want money to get in the way of being healthy, bad luck is enough to deal with.

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted