This cancer baloney stinks. Yesterday was Ben’s first day of his fourth cycle of this crazy antibody therapy and it was TERRIBLE. Let me start at the beginning.
I received a call from Ben’s treatment team asking if I would mind if Ben was assigned to “2nd bed” for the upcoming cycle of 3F8. Second bed means that we would have to wait until the first phase of kids went through their 3F8 and were discharged before we could start our session. I stalled for a bit in answering because my initial reaction was to say “no”. My reason for declining would be that Ben wouldn’t get started until much later in the day. That leaves mucho time for anxiety to grow (for both of us) AND the fact that Ben takes a long time to sleep off his pain medication. I figured that we wouldn’t be getting out of the hospital until very late at night. Evidently, the scheduler could sense my hesitation so she threw in a mini-guilt trip: there were so many new patients starting therapy this week and given the fact that there’s no way to calculate how these new kiddos will react to the painful poison they’re infusing into them, they should really start earlier in the day. I couldn’t truly argue with that but I did say that I would prefer to go first since Ben really struggled with recovery. I did not win my case.
So, we came in yesterday morning at 10:30 am instead of 8 am. Mondays are crazy with all the blood work, getting his port accessed, being seen by the treatment team, recording vital signs, etc. We heard all the kids screaming from their 3F8 process but we had to wait until one of them recovered and moved out of their bed. It flooded me with anxiety. Isn’t it ridiculous that there even has to be a second shift? I hate cancer.
So, yesterday, Dr. Kushner asks for a CT scan of Ben’s mandible because there was a small “marble-like” knot on Ben’s jaw. It was painful to the touch and, of course, I freaked out. I broke out in a cold sweat thinking that cancer was wreaking havoc in my son again. Dr. Kushner tried to reassure me that he didn’t think it was cancer but wanted that CT right away just to make sure. Radiology asked for Ben to come down at 2 PM, which gave us an hour to grab lunch. I made sure that Ben didn’t have to fast before this particular scan since he was starving. His nurse practitioner said that was fine so off we went.
When we arrived in radiology, they first said his appointment was at 3 pm. I told them that I had been in the room with the NP when she made the appointment for 2 PM. I was sitting right there! I heard the conversation! They said “nuh-uh”. Then they saw Ben’s drink from lunch and asked “Did he just eat?” I said that his NP said it was okay and they said “nuh-uh”. So, we rescheduled for 8 am the following morning and went back to the pediatric floor to get hooked up. There still wasn’t a bed available so we sat in the lobby and waited some more.
I cried intermittently all morning. I was on overload from hearing other kids screaming and new parents calling loved ones to let them know that 3F8 is “worse than they could have ever imagined”. Then the stress of thinking Ben’s cancer is back and we have to wait until tomorrow for a CT. Add to that the anxiety of having to wait until late in the afternoon to start the process I just knew was going to be horrific. AAAAARRRRRGGGHHHHH! I fully believed that my head would have exploded if I didn’t let some of the pressure out from time to time. Crying was the best outlet.
He was finally hooked up around 4 PM with the 3F8 being infused shortly thereafter. His pain was immense. He screamed. He cried. He pleaded for God to help him. I tried to focus on getting him through it and rubbing wherever he asked me to. As I was furiously trying to soothe him, I became engrossed in watching a tear slide down his sweet, freckled cheek. It traveled slowly, almost like it wanted me to watch its journey. As it neared the point where it should have dropped off, it stuck. The setting sun of NYC was shining just right through Ben’s window. The light made that little tear glimmer like a diamond. It hung there for a long time until I finally wiped it away. I understood what the tear was trying to tell me: Just keep hanging on. When you think that you’re getting ready to drop off the face of whatever you’re clinging to, just keep hanging on.
Yes, inanimate objects talk to me. Don’t worry. I am being helped by a professional.
We left the hospital around 7 PM and went back to the Ronald. After about two hours, Ben started complaining of pain in his abdomen. I realized that I hadn’t seen him pee all day. Sure enough, that’s what the problem was. All the pain meds had affected him, making it impossible to relieve his bladder. His pain was awful. He cried and wanted to know why he had this life. He hated it. He didn’t want it. He wants normal.
Hang on, kiddo. Hang on. I feel like I can’t do it, you feel like you can’t do it, but we both have to keep hanging on.
So, I called the doctor on call. She had to be about 12 years old. She kept saying “like” and stalling when answering my questions. I was looking for her advice and eventually just said “eff-it” and took him to Urgent Care. Well, remember, we’re in NYC. We’re only about five blocks from Sloan Kettering but five blocks when you’re carrying your nine-year-old child is tedious. Add in the fact that it was pouring rain! Good times. Luckily, a cab was available and able to drive us the five blocks to the hospital.
When we finally arrived at Urgent Care, there were what appeared to be millions of people waiting to see a doctor. I was very discouraged. I sat down with Ben and settled in for what I thought was going to be an all-nighter. Ben would wake up intermittently and cry that he was hurting. I tried not to stare at the other patients who had everything from missing limbs to tumors the size of a baseball covering their eye. Urgent care is a terrible place to begin with, but when it’s a cancer facility I think the “ick-factor” is ratcheted up a notch.
Our 12-year-old doc came over and told us that Ben was on the priority list, right under anyone having chest pains. I almost shouted out that I, myself, was having chest pains so we could get seen earlier. We ended up going back soon thereafter so we could wait for an hour in a different location. At least we had a TV.
Two nurses worked on shoving a catheter into – you know – to try to relieve his bladder. Well, the first catheter was too big. Many screams ensued and nothing was relieved. Not Ben, and, unfortunately, not his bladder. They tried a smaller catheter, which went in quite easily since they had stretched “it” all out. Still nothing. I started to get worried. The doctor was asking me for advice. Finally, a nurse came in with a giant syringe and suctioned out all the pee she could get. It wasn’t copious amounts, but Ben did feel monumentally better. So did I. I nearly broke down for the 70th time that day.
We got back to the Ronald just before midnight. It had been a long flipping day.
We had to be up early to make it to that 8 am CT scan. I was worried about it, but understood that there was absolutely nothing I could do. If it was cancer, we would deal with it. If it was nothing, then yay-hooray! We waited for about an hour before getting called back. While we were in the second waiting area I nearly got sat on by an older lady (I guessed her at about 70). She was dressed in black leather gauchos, a bright red sweater, and had a full face of makeup. Her face had been pulled tighter than a Kindergartener’s shoelaces. In other words, she’d had a lot of work done.
As I said earlier, she nearly sat on my lap. I cleared my throat hoping that she’d figure it out before plopping down on me with her black leather gauchos. I kinda did want to feel them to determine if they were really leather or if they were “pleather”. And while her sitting on my lap would have offered the perfect scenario for figuring that out, my disdain overcame my curiosity, which came out as a very loud throat-clearing. She stopped mid-squat and moved over to the other chair. Then she got up again and headed over to the bathroom. I watched her with great interest. As she was waiting for the occupant to vacate the restroom she started to lose her balance. I saw her sway and then quickly regain her composure. I thought all was well and then “THUD” she hit the floor. I couldn’t get to her in time before she hit her head once on the wall and then again when it bounced off the floor. I felt terrible that I couldn’t get to her (I did call for help though) and then I stopped myself from going over and feeling her gauchos while she was passed out on the floor. Come to find out, she wasn’t even a patient. She was waiting for someone who was having a CT as she was their designated driver.
I wonder if she had pleather driving gloves to match her gauchos?
I do sincerely hope she’s okay. I did inquire about her on our way out of Ben’s scan. They said she was alert and awaiting her own scan. What a day.
So, Ben and I headed back to the hospital around noon today for his cycle of 3F8. We learned that the CT scan was just an errant saliva gland (YAY-HOORAY!) and today’s session of 3F8 was painful, but not anything like it was yesterday. Thank you, Lord.
As for me, I’m crazy. But like Ben’s tear, I’m just going to keep hanging on. At least until someone wipes me away.
I’m about to blow a vein recalling all of the NPO/not NPO screw ups in the past. Or being NPO and then waiting until 10pm for some dinner arrive when he hadn’t eaten since the night before. BTW, we had to visit the Urgent Care in Manhattan during Finn’s Make A Wish trip. Of course. And two days ago he impaled his thigh on the brake lever of his bike. We rode in the ambulance with the handlebars still attached to his leg. I’m just trying to make you feel better….I wonder why no one wants to come visit us. Maybe they’re afraid of our luck….
Cancer is ugly, that’s for sure. I have a prayer journal for my friends who are battling cancer right now. I have added Ben’s name to it. I am also praying for you.
You are a fabulous writer, and through your blog, I feel you are giving other people hope. Just reading about the challenges you and Ben face daily is mind boggling.
I’m praying for your little brave guy and I’m also praying for you. Thank you for sharing your story even though I’m sure, at times it must be painful just thinking about all that you are facing.
Thank you for your prayers. I sincerely appreciate your love and kindness. ❤
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