On February 29, 2008, I began chemo treatments every other Friday. Exactly 24 hours after my infusion ended, I had to report to another clinic that was opened on Saturdays in order to have my Neulasta shot. Chemo works by destroying fast-growing cells like cancer cells but the downside is it also destroys healthy fast-growing cells like blood cells, particularly white blood cells which leaves you very susceptible to infection. Neulasta stimulates and acceleratesthe growth of white blood cells.
Most people have no problem with Neulasta but about 20% of the population experiences bone marrow pain. I was one of the 20% and I cannot describe how this deep pain felt. What I can tell you is there is nothing you can take to ease this type of pain. Nothing. The only thing you can do is pray and ride it out.
After the first time, I knew the drill. The first four infusions which were andriamycin/cytoxen went like this. I would feel fine on Friday after being at the clinic all day. The meds I took for nausea post-chemo worked well and I only got sick after chemo once. I would be a little tired on Saturday but I still felt "okay" after getting my Neulasta shot.Sunday morning, I would awaken to a dull pain. By Sunday afternoon it had intensified to the point that I didn't want to get up out of bed and I usually didn't. After a couple of days, the pain would fade and I was good... until the next infusion.
My last four infusions were of a drug called taxol. Most people tolerate taxol quite well but it causes nerve pain in about 20% of the population. Guess what? When you hear that one person seemed to pass through chemo with "no problems", you must remember a few things. First of all, not all chemo treatments are alike. Different drugs are used for different cancers and sometimes different drugs are used to treat the same cancer. Secondly, depending on a person's health and age and the dosage they receive,they are going to respond and recover differently. We're not talking about one-size fits all here. Finally, not everyone experiences the same side-effects. During my last four infusions I had the misfortune to experience both bone-marrow and nerve pain simultaneously and trying to ease that type of pain was useless. I was miserable. For about a week, I could barely walk. Putting weight on my feet made them hurt terribly. They felt extremely sensitive and then numb as I quickly developed peripheral neuropathy. Eight years later I still have peripheral neuropathy in both my feet and my right hand. Thankfully it is only in a portion of my right hand (I am right-handed) and the left escaped it altogether. Most of the time my feet feel like they are asleep and on the rare occasion when they don't, I experience jolts of pain. I prefer them to feel numb and I have become used to that sensation.
During the first three days beginning on Sunday, I was feeling the full effects of both neulasta and taxol, the pain was unbearable. It is best described as having the fiery snakes wrapping themselves around your legs and crawling up and down them. It was explained to me that this was the result of my damaged pain receptors. They were "mis-firing" and sending pain signals to my brain but in reality, the pain was "phantom pain". There was nothing they could do for me and I would simply have to endure it and remember, when the chemo treatments ended, so would the pain. They were right but in the meantime, well, I can tell you that phantom pain is uh... very painful. I have heard it said that childbirth is the worst pain. I have experienced both childbirth and bone marrow/nerve pain and I can tell you, the latter was worse than the former. Much worse.
Knowing it would not last forever (hopefully), did not ease the pain. It simply made me become obsessive about counting off the days until my suffering would end and clinging to that knowledge that it would someday be over. You would think that knowing the date of my last chemo would have made it easier to endure my suffering. Perhaps it did but it didn't seem like it. Every day was a day to be endured, a day of painful misery and truthfully, more people end chemo prematurelythen what you might realize. It is hard to endure when you are in pain and suffering, even when you can see the end of the road up ahead. It is hard and yes, I did go so far as asking God to either relieve my pain or put me out of my misery once and for all.
"It is not forever!" Even though I was only looking at about two more months, it seemed like an eternity. Knowing that there are people who are facing pain uncertain of when it will all be over, it makes me feel ashamed that I struggled with this but I did. When someone hurts, whether physically, emotionally or both, they hurt and we need to be sensitive to that fact. They hurt whether we think they should or not.
While it did not make things "better", clinging to the knowledge that it was not forever did give me hope and that was what enabled me to endure the pain, the weakness, the fear and the isolation I was experiencing as an invalid. It was not forever even if it lasted for a lifetime in this world. It was not forever because there was coming a day when God would wipe away all of my tears and from that day forward, I will never suffer any type of pain or loss ever again.
I can't imagine the path you have endured. What a wonderful thought it is that you have used your trials and struggles to encourage others. A simple inspiration.