Thoughts on the road

As I sit waiting for take off, I take a sigh of relief. Unfortunately a lot of us have had to be forced into this position. America isn’t the same any more. A zip code is crucial to your health and can even mean life or death if you are stuck in the wrong one.

My mother was diagnosed a few weeks ago with stage 4. I can’t even write these words or say them without stopping to wipe my tears. Two years ago we watched her suffer thru a double mastectomy. We believed them when they said the margins were clear. They they got it. She was fine. Until she wasn’t.

They were wrong. It’s now popping up everywhere and it’s moving fast. My parents are in their seventies. They should be able to have medicine that is effective, safe and affordable. A dying person shouldn’t have to worry how they they will find the money for the monthly supply that a cancer patient needs to have a hope to survive.

They came to visit just two and a half months ago and my mother was asymptomatic and was feeling great. Within a month her small frame started holding so much liquids she looked 5 months pregnant and needed aspiration every few days to breathe. The pain was unbearable. Dizziness and nausea was a daily issue most days. She was unable to talk too much with her grandchildren on FaceTime.

Then came the dreaded word….Chemo. It started to get real. I felt helpless being so far away. To make matters worse I kept getting sick and needed to push off my visit week after week. I was feeling so desperate and scared for my trip home.

I flew in first to visit some friends and to decompress. Right now things at home and work are insane and crazy busy right now, I needed those few days before I faced reality.

My mother has been my best friend since I was 11 years old. We became very close when my parents separated for six months and I was finally old enough to accompany her to her various art festivals. She is such a talented artist and she taught me so much on those weekends. How to be a natural salesman, spatial relations, how to strike up a conversation with a stranger, how to see small things about a person to know what they like, how to be respectful to people who aren’t kind to you, how to pack for a show, and of course the world of art.

We loved to people watch together and I learned how strong my mom really was. Unlike me, my mom hates talking to strangers. The idea of having to make a cold sale gives her anxiety to the point of hives. It didn’t stop her though. She put on a genuine smile and gave it her all even though it went against her nature.

I was a precocious little kid and I loved to barter with other artists and make sales to pitch in. Little did I know that training I had received gave me the confidence I have now that helps me everyday. It groomed me for exactly the skills I needed and possess today. I didn’t realize that till recently. I just thought I was cheap labor and a way to get out of my dad’s hair for the weekend. And maybe that’s what the plan was, after all I was 11 with an 8 year old brother at home.

Those years gave us a bond that held strong even when we lived far away from each other. I had moved back to Florida to raise my family close to my parents. I had to leave for health reasons for my children. It’s so hard not to be there now for a parent, especially mine.

I don’t know what I will do if the Chemo isn’t allowed to start working. It’s been weeks and almost every other session she gets turned away because she’s too sick to receive the supposed life saving chemo which is crucial at this stage because the rate of progression.

I was desperate to get her what she needed, and with chemo not working it became even more critical. This happened so fast there is no time to wait for an appointment, register for a card. At least this is what my 73 year old father thinks. What can I say. He’s probably not wrong and time is precious.

After they exhausted some medicine that was given to them from Maine, they were in desperate need for FECO. Only a few places here carry it and it is often out of stock. Also after seeing the mess behind the curtain in some places, I worry about encouraging products that I do not know the source or the manufacturing. This is my mother. It’s not just lip service of me wanting to have craft medical. I am afraid for people who are needing Cannabis, but their only options are a dispensary or gas station cbd.

I enjoy distillates and diamonds. It’s nice for a sesh. It’s great to mix with whole plant to give you an extra boost as my partner loves to say. It’s not something I want a cancer patient who is running out of time to take. A cancer patient that is my mother, my best friend, the glue to my whole family.

I hope one day things will change. I hope caregivers and homegrown is allowed one day in Florida. I fear the temptation to get recreational tax dollars is too high that it will wind up mirroring other states. No one seems to learn from roll outs of other states. I remember last year attending Americans for Safe Access in DC so proud to that Massachusetts (at that time) had the best program in the country. Sadly we are falling behind as other states come on line and we still struggle with our license process.

I was so impressed with the way I was treated as a family member of a card carrying patient here. Massachusetts could have a lot to learn on patient care and education. The small business advocate in me wanted to hate the place, but the very large monopoly showed me a lot of wonderful ideas to help patient care in Massachusetts.

Now question is who to tell what to…….

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