Monday, May 13, 2019

Bouncing back in time for Round 2

I'm finally bouncing back from Friday's first round of chemotherapy, just in time for round two today at 1:00 p.m.
The good news is today is a short day with just the pre-meds and a short 10-minute drip of Bendeka and a shot of Velcade.

On Friday, I started with the pre-meds (anti-nausea, steroids, fluids, Benadryl, etc.) then followed that up with about a five-hour drip of Rituxan then the Bendeka drip and shot of Velcade.

Rituxan is my arch-nemesis.

Back on March 12, 2009, I received my first dose of Rituxan, also called rituximab and ended up in the emergency room after a severe case of the rigors.

This is what I wrote in my Caring Bridge journal following the episode:
I asked Paulette to pass to me the Spiderman fleece blanket I "procured" from my son. I began suffering from the chills.
By the time Paulette handed the blanket to me the chills had gone from a mild shake to a determined rumble. The cells in my body were revolting against the Rituxan and I was in the crossfire.
Paulette immediately went into the hall to summons Suzanne. When Suzanne had returned I had no control over my body as it battled itself from inside to out.
My muscles tensed to stop the shaking, but the Rigors as they are called, won the battle. My body raged on, and I was helpless.
Even under the influence of one sedative, the pain I felt was severe enough for me to shout out in pain as I tried to calm the battle between my cells and muscles. The drugs were now in full effect. I fell in and out of consciousness as war raged inside my skin. 
I don’t remember much from the episode of the Rigors I suffered. I remember opening my eyes and hearing distant voices asking me if I was OK. I remember hearing Paulette tell me she was there, right next to me. I thought I was dreaming. There were so many people in the room, but I wasn’t conscious enough to identify them all. 
At some point I passed out. Whether it was the drugs or the pain I’ll never know. I’m guessing it was a combination of both.
I’m not sure how long I was there, but I woke up in the Emergency Room. I was on my back on the small metal bed staring at a bright light in the ceiling. Again I heard the distant voice.
“Steve, are you OK. Are you awake.”
Nothing. Apparently my body wasn’t ready to regain full awareness. 
As more time passed, and the four different sedatives I was given during my Rigors episode wore off, I began to understand where I was and why.
I had a bad reaction to the Rituxan, or what I was told, the pace of the Rituxan. They began the dose slowly, and worked their up to dripping medicine into the tube at a faster pace. Apparently, my ceiling was reached.
We didn't give up on Rituxan, as it is an important piece of the puzzle in battling Non-Hodgkins Lymphomas.

My Rituxan drips were spread out over multiple days and the pace of the drip was reduced to avoid another such incident.

However, it still affects me in a negative way.

During the drip, I can't sit still. I endure a tickling sensation in my limbs that continues throughout the days that follow the drip.

Even now, three days after receiving the dose of Rituxan, my feet and hands are "tickly."

The other side effects include hives (red itchy welts) or rash, itching, swelling of your lips, tongue, throat, or face, sudden cough, shortness of breath, difficulty breathing, or wheezing, weakness, dizziness or feel faint, palpitations (feel like your heart is racing or fluttering) and chest pain.

Since Friday, I've had a cough, shortness of breath, weakness, some dizziness and various abdominal pain.

Friday was a tough day as far as the fatigue goes. That probably had a lot to do with the heavy dose of Benadryl they gave me prior to the dose of Rituxan.

On Saturday, we stopped up at Relay for Life as I wanted to hear Mrs. Sabol's kickoff speech. I worked with Mrs. Sabol at Berkshire High School. A few years ago, she was diagnosed with Cancer and it was great to see her on stage kicking off the 2019 Relay event.

After Relay, I was able to hop on the tractor and cut the grass. Paulette wasn't too happy about that but I started when she went to pick up Chelsey, so she couldn't tell me no!

By Saturday night, I was again feeling the effects of the medicine. My energy level tapered off and I began feeling some bone pain and other irritants.

Sunday was the toughest day of the weekend.

Imagine having the flu and multiply it by 10.

I was weak, dizzy, nauseous and my pain level fluctuated throughout the day. My medicinal marijuana gummy bears helped with both the nausea and pain, but I'm not sure I can continue to consume as many gummies as I did on Sunday. The good news is there is very little THC in the gummies, so I'm not getting the psychosis effect of the plant, just the relaxing properties.

I did take both Zofran and Compazine to help with the nausea but there was a lot of dry heaving throughout the day.

Today, I woke up feeling much better, although I'm still a step slow and I have a hard time focusing. My pain level is low, which is a bonus, but I still have the headache I have dealt with since December.

We're hoping the chemotherapy will help to reduce the size of the swollen lymph nodes, which could be pressing on nerve endings. Is that the cause of the headache? We'll find out.

Again, today's drip shouldn't take very long.

I'll get the pre-meds and then the Bendeka and Velcade. The side effects are very similar, so I imagine that on Wednesday I'm going to have a very long day. That will give me Thursday to recover and then I'll go back on Friday for another dose of Velcade.

The plan is to do up to two rounds of chemotherapy to help reduce the symptoms I'm faced with now--the swollen lymph nodes and pain--to prepare me for the collection of T cells for the CAR-T therapy I'll go through next month.

I don't have the exact timeline yet but hopefully, it all happens soon so I can begin the road to recovery.

If only it was that easy.

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