A Path Through

I have shared in earlier posts that my first chemo session resulted in a less than pleasant introduction to Paclitaxel. On that first poke, my body clearly indicated the dislike to the drug within 5 minutes of meeting the prescribed poison that is intended to eradicate my cancer and I am fairly certain there is NO CHANCE of them becoming best buddies. Like ZERO chance of that occurring…less than zero.

So given that my body has identified THAT drug as arch enemy #1, with each chemo session I now take a large dose of steroids (Dexamethasone to be exact) 12 hours and 6 hours prior to my chemo start time. This new drug regime assures that my body is tricked prepared to accept the Paclitaxel to come without making a scene that causes lights to flash and nurses to come running (been there, done that, not looking to repeat).

Overall, this little steroid booster had done a great job at controlling any further reactions on chemo days. However, as a little “fun” bonus, one of the side effects is agitation and extra energy. This feeling is similar to the feeling you would get after you have downed four Red Bulls with a liter of cappuccino as a chaser. Hence, the reason I generally do not sleep between 5:00am on Mondays….and some point late Tuesday evening (or hey maybe even early Wednesday morning…who knows!). Yes, I am aware that the excitement appears to never end on this whacky path I am on…but I am REALLY looking forward to a bit of boredom!

Unfortunately, there is also new complication that has arisen. One of those “side effects” that no one really mentions as it is really fairly unknown. It appears that once I am “steroid free” (what we now know is 36 hours after I finish taking or are given them), my body has a little fight left in it when it comes to this chemo drug, and it is playing dirty with my nervous system.

Things all started two days after my second chemo session. I woke up Wednesday morning feeling like I had the ”hungry shake”; the kind you get when your blood sugar is low. After a bit of breakfast, I felt slightly more calm, however this was only the opening act of the “tremourfest” to come. About an hour later at 8:46 am, in the middle of a work related Zoom conference call, the real show started. My body started to shake. It started with my hands and being unable to hold a pen, then I could not dial or hold the phone, and progressed to being unable to even type a coherent messages to my peer sharing what was happening. From there, it quickly moved through my upper body, my head, shoulders, and neck and then to any other area in my body that seemed at all steady or in control. Every part of me just started twitching and jerking to it’s own little beat. The best way I could describe it would be a cross between the shaking of someone with sever Parkinson’s and an epileptic seizure; however I was fully aware of what was happening, and could do nothing to stop it.

After connecting with the nurses at the cancer center, the direction was clear “Go to emergency…NOW“. So off we went. My dad (the driver) was still wet from the shower he had been in minutes earlier, my husband (the driver assistant) who was trying to keep himself under control as he wondered what the heck was happening to his wife, and me….the shaking chick in the back seat trying to speak in a understandable manner as I advise the gentlemen in the car things would be just find and not to speed as we would get into an accident (see, even shaking I can be sensible). The other little item in the car with us, was the ever so important little red card and sheet given to us on day one of chemo that indicates to the Emergency Department that I was a high-risk cancer patient.

Through the entire 10 minute drive (which SHOULD have 15 minutes minimum), I don’t believe my dad’s tires touched the ground once. He apparently had a plan to get a police escort if he could draw the attention of any law enforcement in the area and would simply refer to “twitchy” bouncing around in the backseat to get their attention. On a positive note, we made it to the emergency without a single ticket, and unfortunately for my dad, escort free.

When we arrived at Surrey Memorial, the speed at which I was taken care of was dizzying and almost matched my dad’s record time of getting us there. Within 15 minutes of walking (yeah my husband walked, I did more of a shake and bounce) through the emergency room doors, my convulsing body had already had blood drawn, a chest x-ray, and was safely tucked away in an isolation room twitching and contorting along with my worried husband, as we waited for the doctor.

Five minutes later, I was being assessed by the doctor on shift, who moved very quickly through the situation and determined two courses of action. First, as the blood work was still pending, proactive IV antibiotics would be started in the event there was an infection…ANYWHERE. Secondly, he was questioning the neurological side of the issue, whether what was happening was due to the steroids or chemo medication; with that in mind, he recommended we try 1 mg of Ativan (or as I now call it, my best friend). By this time, I had been in seizure state for over an hour. If he had told me that tar and feathering myself while clucking like a chicken would stop things, I would have taken a tar bath, rolled in a bag of feathers and clucked like a chicken, I was willing to do ANYTHING!

Within ten minutes I was hooked up to an IV and Piperacillin was dripping away. I also had my first dose of Ativan (with the option of a second if needed) and I sat on the bed twitching non-stop. There are no words I can think of to describe the feeling of being unable to calm my body. I hurt, my body ached from the tension going through it and I was scared as I did not understand what was happening to me and just wanted it to STOP.

Then….about 8 minutes after the first dose of Ativan….it started to happen…..slowly, wonderfully….IT STARTED TO HAPPEN.. The shaking became was less violent, the twitches became less pronounced, the movement became less frequent. About 12 minutes later, my husband quietly and cautiously whispered to me “you are not shaking as much” as if he was afraid that my body would hear him and suddenly return to the tremors it had been in just minutes ago. But, it didn’t hear him…and within 20 minutes, complete calm had returned to my body and I lay there overwhelmed with relief that it was done. When the physician popped back in he was greeted by an exhausted, yet smiling me, and my husband who could finally relax as well.

The doctor confirmed that the blood work looked great, no infections present (yes a WIN!) but there was indication I was reacting to something (yeah we needed blood work to prove THAT one). His assumption continued to be that the culprit was either the steroids or chemo meds so to be proactive in managing any additional events, he prescribe a small amount of Ativan and sent on my way; much steadier and feeling as if I had just done a thousand sit ups!

Now, I will formally thank the Emergency physician for his incredible foresight in assuring I was prepared for the possible return of the shaking because they came back. They came back on Friday, and on Saturday, and on Sunday. However, with the help of the Ativan, we were able to manage the situation quickly and within 15 minutes was steady again. I had no clue why it was happening, and the medication makes me a walking zombie …but I am not a walking SHAKING zombie, so really that is a WIN in my cancer book!

On the following Monday, I had my first follow up with my Oncologist since starting chemo and my new little shaking habit was a hot topic of conversation. It was a little disconcerting that she had never heard of this happening….EVER. Then again, we knew I would be throwing curveballs with my previous illness and a body that likes to shake things up (no pun intend). She confirmed that based on the time lines, we could remove the steroids as being the driver of the reaction as they were no longer in my system. The next question became what IS causing it. She spoke of a slight concern regarding a possible lesion on my brain and requisitioned an MRI with an urgent timing. I did indicated that I was positive they wouldn’t find anything and then proceeded to find it incredibly funny that I had admitted they would find nothing in my brain, because THAT is how chemo is messing with what I think is funny right now! We also discussed the possibility that my body is continuing to show that it does NOT like the Paclitaxel in any way shape or form; as if there is nothing making either the body or drug behave, the fight starts and only my buddy Ativan can get the two scrapping parties to chill and make nice for a while. As she could not put her finger on what was happening, she prescribed a few additional Ativan to get me through the investigation period….another exceptional call.

The past week has continued to shake on almost a daily basis after the steroids’ have left my system. I am starting to know when it is coming so can get the medication in to my system, and reduce the impacts and duration; not to say I am impressed with this ability, but it is making the situation more manageable. My husband and I have also taken on a bit of a “Sherlock Holmes and Watson” approach . Each seizure is documented as to the day, time, length, and we are trying to connect the invisible dots.

I will also admit that as I enter into Chemo Eve for the start of my next chemo cycle (that’s right everyone, I have completed one out of the 4 cycles on these meds…that is 25% complete!!!!!); I am oddly relaxed as the one thing we have seen is WHEN the steroids are in my system, I am not shaking. I am not sleeping, but hey…I will take that ANY day over what has been happening.

I am not a fan of the shaking and it is genuinely frightening not being able to control your own body. I have stopped driving as I know that I would be a significant risk if I was behind the wheel when the shaking hit. This loss of independence is hard…no it is FRUSTRATING. Additionally, the one thing that steadies me can turn a potential productive day into one that I need to write my name down so I remember who I am and the fatigue from the medication makes concentration…challenging at best.

My husband has been cautious with leaving me alone now and through the majority of the shakes, he has been by my side, holding my hand, documenting what is happening…..making sure I am “OK”. However, due to spring break, during one of last weeks seizures it was my son who was first to help me out. As he took my shaking hands and guided me to my room, he told me to keep looking in his eyes. This is exactly what I have done with him when he needs my help through tough situations. I have told him to look in the eyes of the person who has your back, they will keep you safe. My boys…they are my otters in rough waters.

Yes, I always knew there would be hills and valleys on this path. This is a hill, with MANY bumpy parts to it. We are continuing to track each seizure with dates and times so I can make a PowerPoint presentation complete with graphs and handouts for my next Oncologist appointment (did I mention I was a self professed over achiever?). But I am fairly certain my husband will refuse to walk into my next appointment with me if I have anything more than a sheet with data we are collecting but where is the fun in that?! (I will also most likely let him win on this…but don’t let him know).

The next few weeks are bound to be bumpy for the path I am on as we try to figure out what the issue is. However, with each bump I become a bit more stronger in my desire to fight what is happening and even more importantly I move one day closer to the goal of finishing the remaining 3 cycles of chemo with this nasty medication and moving forward to the next part of my chemo journey. I have no idea what those new meds may be waiting to spring on me, but I know that I am strong enough to take them on and will successfully complete the chemo portion of the path through.