December 1-20, 2004. High-dose Cyclophosphamide treatment that would hopefully halt my disease progression and extend my life beyond the projected one year I was looking at. No percentage rates for success. It was a study treatment. There was also the possibility of death. Catching any bug during the process could be fatal. I was advised to put my affairs in order. It made sense either way. I made all the necessary plans - living will, will, good-bye letters. Thank goodness I never needed to use them.
Treatment began on December 1. I was isolated in a room for the first 5 days. Purell dispensers were mounted EVERYWHERE. Outside each room. Inside each room. I was able to be mask free in my room. Anyone entering had to be masked and use Purell upon entering the room. If I left to walk laps around the floor, I had to be masked. The only smell in the air was Purell.
On Dec 6, I was discharged from in hospital to go to “IPOP” a mix of in-patient/out-patient care. I came to the hospital every morning for vitals checks, various infusions, and monitoring. At the end of the day, I was able to go home.
Straight home. ZERO trips to any public place. Always masked in transit and at the hospital. Everything smelled of Purell. To include my home. My husband had gone to the extent of purchasing a Purell wall dispenser for our home - to help keep me safe.
Today’s current situation brings me back to that time quite regularly. As a result of the original treatment I have an aversion to any hand sanitizer that smells like Purell ... it makes me nauseous and quite honestly all hand sanitizers give my skin the heebie jeebies. I use them none-the-less - in an attempt to stay safe.
Since this whole health situation started I have been receiving a couple of messages a week from Slayers asking my thoughts on all of this.
I’m smart enough to say that I don’t have clear answers in regards to the political nature that this has taken on. No matter what was or wasn’t done, someone will bitch about it. Someone somewhere will always bitch even when hit with a golden stick. Either not enough precautions or too many precautions. A pandemic run amok or “they’re” trying to take away our freedoms. They didn’t protect us or they tried to control us. China was out to get us. The list goes on. And it will continue to evolve and take on new narratives as things unfold.
What I do know is THIS:
- if the numbers from here are inflated, even by 50%, the facts at the end of the day are still that this is a world-wide health concern. Folks that are blessed with the luxury of healthy bodies and immune systems may not be concerned. They may only be carriers and never get sick. They may (and do) liken this to the flu. For them, that may very well be the case. For them, I am happy.
- Individuals with autoimmune, lung, and/or heart conditions do not fair well if they contract this.
That’s OK for them. They all have a place. Just not a place with me - not in this situation. For me, I will likely now look at things differently going forward. While I don’t like to live in fear, I will be living with a new hypersensitive caution. You see, this is much like that time back in 2004. The difference is that, then, I had a timeframe and the expectation of a new immune system. Though I’m mostly stable, now, I have more health issues than then and no timeline. This will be a new on-going concern for health compromised folks like myself.
It’s the same. It’s different. I’m smart enough to say that I don’t know. So, while I don’t know, I’m using the time to find new perspective and find a new balance in life going forward. I’m embracing the quiet, crawling life here at the farm - I DO pay a mortgage to live here and moved here for the peace and serenity after all. I’m also embracing the new uneasiness that I’m feeling surrounding travel now and using it as a catalyst to bite the bullet on life-long dreams of living periods of my life as a traveler - on the road in a camper.
I’m using this to find growth. To let things and people go in other directions. To be sad. To be angry. To be scared. To do nothing. To do new things. To try old things. To sleep. To heal. To educate. To learn. To guiltlessly veg with the television. To read. To plan.
Oh, the planning. Though tomorrow is NEVER guaranteed and we live for this day, we also plan for tomorrow. I’m planning for tomorrow’s that continue to be filled with giving back to this community. In old ways. In new ways. In ways that allow me to go where “the need is so great” ... while having roots and wings.
With ALL that being said ... my answer to the recurring questions is - I don’t necessarily know. Trust YOUR feelings. Acknowledge them. Feel them. Work with them. Let them help you. Then ...
Persevere. Rock on.
💋🤘🏼
