Saturday October 12, 2019
5:20pm

I finally have a bit to myself. It’s quiet, almost dinner time. I’m sitting out front, actually enjoying the fall temps right now. The leaves are starting to turn, there are fallen leaves all over the ground, I’m in comfy sweatpants and it’s Saturday evening.  In the distance there are sounds of kids outside. My kids were outside with us all day. Now they are relaxing before we eat, and I’m getting some downtime too. Which is good because I can only do a little at a time before I need some downtime again. So I’m resting up so I can be ok for the remainder of the night with the kids.

Thursday, October 10, 2019 was my last day of radiation. I completed 28 sessions. I traveled about an hour each way, every weekday for 28 days. The center I had to go to is a high volume center. It’s unfortunate, but this radiation center is a revolving door from the time they open at 7am until their last treatment at 10:30pm. Their morning appointments are reserved for mostly all the children and babies that need radiation because they need anesthesia. Children are mostly treated here because the type of radiation used here is Proton radiation, different from the photon radiation that most people needing radiation usually get. Proton radiation is less harmful to the surrounding organs because the radiation is given in beams, to specific areas, rather than encompassing an entire region of organs. So babies and children who need radiation are given this type. Why did I receive this kind? Because my tumors and other “evidence of disease” areas were so spread out, because I had lymph node involvement, because of my age, and other factors, it was determined that this was in fact the best course of action. Photon and proton- one is not proven to be better than the other. Data shows one is not more effective than the other, but proton is just less harmful to other organs, and since this radiation would be near my heart, I took all recommendations and went with it. I trust my medical team.

There are only 13 of these Proton radiation centers in the whole US. I was lucky enough that there is one in NJ and not too terribly far from my house. I met others who flew in from other states, adults and parents with their young children, who had to live in a hotel for the duration of treatment. Although the drive back and forth each and every day for 28 days was not easy for me, I at least got to go home, to my own house. To my kids and my husband. And I stayed in state.

Afternoon appointments were hard to come by, and as mentioned before, the mornings are set aside for the babies and children, so I got the evenings. Which wasn’t so bad, but getting back to that drive I had, anyone who knows route 18 from where I’d get on from route 9, I’d have to take 18 all the way down to Easton Ave and travel Easton ave all the way up, almost to the 287 entrance. A drive that should’ve taken me 40 min, ended up taking me sometimes over an hour each way because route 18 anytime of the day is a nightmare. And to make matters more enjoyable (super sarcastic) that’s when construction started on 18 to pave it all the way down about 10 miles worth, then line the roads, 2 lanes - both sides of the roads, so traffic was pushed into one lane both ways. I know, I know, some of you travel to work or into the city and have to deal with craziness everyday, but this just added to the roughness of it all. I wasn’t going to work or doing anything remotely enjoyable. I was going to my radiation treatments. And by the time I did this drive, I was tired already. I’d drive an hour one way, be at the center for 20 min to a half hour, if they were running on time. If not, sometimes if he waiting for an hour. That didn’t happen often, but there were a few times.  The other downside of the evening/nighttime appointments was that I hardly got to see Matthew because he’d come off the bus and I’d have to run out and most nights I missed bedtime for both kids. And again, I know some parents work nights and miss those times, but Matthew knew it was so mommy could get some more medicine to help make her better. And I knew it was for radiation. So it was just different.

Everyone at the ProCure Proton Radiation Center was beyond helpful and supportive. From the moment I stepped through those doors I was treated wonderfully. I can’t say enough good things about this place. They made an unfortunate situation into a positive experience. Every evening I’d get there and majority of everyone there that was waiting for a treatment was much older than me, and heads would turn as I walked in with my swipe card and blue ProCure bag they give to everyone, because I was the one there for treatment not to wait for someone else, but I walked in everyday with my head held high and smiled at those around me, nodded at those who gave me a polite nod, chatted with the people at the concierge desk, and clapped for those who walked out and rang that bell just as I did on my last day.

My last day was wonderful. This place- they play the Rocky Theme song as the patient walks out and rings that bell and everyone gets on their feet and claps. When I knew my last date, we made sure to show Matthew exactly when it was and we kept hyping it up. We took him out of school early, and me, Jason and both boys went up to the center, along with my parents who met us there. I finished my last session and when they were ready, they opened the doors to the waiting room and there were Jason, my kids, and my parents with balloons and flowers for me, standing along with my nurses, radiation techs, and other staff members I’d grown to know over these past 5 weeks. Other people in the waiting area were standing and clapping too. I rang that bell. For me, that bell not only signifies the end of my radiation, it also signifies the end of 10 long, grueling months of treatments. And although my journey isn’t over, because believe it or not, there is still more to be done, I made it through the worst of it. Now is the recovery, healing, and prevention portion.

Side effects from radiation are not like chemo at all, but radiation is no walk in the park either. At first, it’s not bad at all, because symptoms usually do not present itself until about 2 weeks in. That’s when the fatigue hit. Again, not like chemo, but I quickly figured out that I could only do things little bits at a time. In order to get through my day, I was on for an hour, and off for 2 hours, on for an hour, nap when Ryan naps. On again for an hour with tv on or backyard because thankfully Ryan is a bit more independent and can run and play and I can sit. Then Matthew would get off the bus and then someone would come in to help or Jason would come home and off I’d go for treatment. But I needed a lot more downtime to conserve my energy. Getting out of bed in the morning was hard and is still not easy. Takes me about a half hour to wake up and actually get up. That’s not like me. Now I can’t fall asleep at night because I have burns in several areas that will get worse before they get better. At this point, they are getting worse, which is right on target. Burns on my skin and burning sensations deep inside my arms and other areas that they hit. I’m managing, but it gets tough at times. Especially lying down at night.

Then there’s the esophagitis. The lining of my throat is always irritated because lymph nodes run up that high and the left side of my neck was a radiated area. I have a terrible burn spot there too. My throat feels like I have a lump in it all of the time and feels like I have that scratchy strep throat feeling. I’ve had this feeling for about 3 weeks, and makes eating tough. I don’t have strep- I was cultured 3 times. I have medicine that can numb my throat, but then what’s the point because you can’t even taste the food. I’d rather stick to yogurt, smoothies, protein shakes, and maybe the occasional ice cream or pudding.

So even though my treatments are done, it doesn’t feel real to me because my body just feels beat up. There’s no other way I can describe it.  Don’t get me wrong, I’m beyond ecstatic that I’m done, but I guess I’m not as overjoyed as I expected or maybe as some people might expect me to be because to me, it’s not over yet. I still have to go for injections, which I start Thursday, and will have to take medication for many years going forward. And just like everything else, it all comes with side effects. Side effects that I have to brace myself for, just in case. But once the current side effects stop and I start the upward climb, that’s when it will hit me. Then maybe it will sink in, that the hard part is done and I’m out and have gotten to the other side of this. But I’m not sure. Not sure of how i will feel or when I will feel it.

Then there’s still the coming to terms part and the aftermath, and the scans that will follow and getting reunited with everything from my life that I once had a year ago that I no longer have anything to do with now because my sole purpose for the past 10 months was to just fight for my life and be what I could for my family, for my kids. But for now, now I’m ready to rest. To enjoy life a little without being in pain. I’ll get there, but it’s still going to take some time. And I’ll still remain positive, as I have been throughout everything so far, but I’m tired. Physically, mentally, emotionally, I’m drained.

So I do what I can with my kids, with Jason, with the rest of my family because that’s what gets me through. That’s what’s gotten me through. I might not be able to do much at a time, but I show up as best as I can.

And now, this fight of my life will now be the fight for the rest of my life because there’s no way reccurance can happen. I’ve learned a lot over these several months and I’m thankful for what I’ve been taught, but now I’m ready to use what I’ve learned to educate others and to help others because what happened to me can happen to anyone, at any age.

Keep continuing to send those well wishes and healing thoughts my way!! And come celebrate with me on November 9th!! Need info on it? Contact me!! Can’t wait!!

Thanks for all of your love and support!!
💗💪🏻🙏