This is harder than I thought it would be.
Trying to find words while plunged in the depths of some deep emotions, so much change, trying to make sense of so many things that are so wrong, both in my world and the outer world.
But it’s good for me. I can tell it’s good for me to write here. It’s good for me to try and make sense of this here. Not only is it helpful later when I’m trying to piece together so much trauma happening at once, but it allows me the space to try to process it.
Thankfully, I’ve had friends who have offered a lot of wisdom and their own experience losing a parent. I guess it’s typical to not be able to believe it. It seems like a couple of years is how long many have taken to not pick up their phone to call the parent.
Of course, in the middle of all this, I’ve got to be vigilant about taking care of this body. I couldn’t cancel a couple of appointments without not getting new ones until September so I’ve had to carry on. I met with a registered dietitian that’s taken me months to get an appointment with (WHY oh WHY was that so hard to get?) She is working on calculating my current intake of macro and micronutrients (macro are carbs, fat and protein and micronutrients are vitamins, minerals and trace minerals).
This whole past six months, I’ve just been dumping into my body whatever I could - supplements, IV bags of nutrients, drinking juices like a mad woman.
But if I want to make it beyond…let’s say 24-36 months - that’s how long I give myself on my current regiment before something else significant breaks down or cancer forms. It’s been exactly five years since my dad lost most of his colon. The body can only go so long with limited nutrients. And we’re not even sure HOW MUCH my gut is absorbing these days!
I will need another Spectracell test - it’s a functional medicine test that measures vitamin and mineral levels in the CELLS, not the serum which is how standard mainstream tests measure. So if I gulp some juice with an Emergency Vitamin C packet and then go get my labs drawn in a traditional lab, it will say I’m doing GREAT on Vitamin C.
But if you do the more specific test, you can evaluate how much is actually stored in the CELLS which is much more important data.
My dad’s death has depressed and scared me on so many levels, but it also has made me more determined to get my nutrition situation under control.
What if he’d been getting IV nutrition these past five years? Would the lung cancer have formed? What if he was getting high dose Vitamin C IV bags which has been used to treat cancer for years but because of politics and other bullshit, it’s still not widely used. I have more information about how hard certain parties makes it for us to get, but I have to be careful here….
At the very least, it doesn’t HURT anyone like chemo or other cancer-fighting drugs which will remain nameless here. It’s a water soluble vitamin.
Which in very scientific terms means: you pee out what you don’t use.
So now I’m working on doing some labs and determining which dose of that is best for me. I’m annoyed that I’m just learning now that it’s a process to determine the ideal dose of Vitamin C which will take several weeks of IV bags at the ND. But alas, molasses (which is a very good source of iron by the way - my OLD knowledge is solid, new knowledge …..not so good at remembering).
At least this is in motion. I meet with primary to discuss it next week, 2 weeks later I meet with the RD (dietitian) again and then the ND to really hammer out a protocol.
Once I have my protocol in place, I can then create a template for my family members. That wish to have it.
I think so many people at the top of the food chain underestimate how much stress plays a factor in medically fragile and other marginalized. No, I don’t mean regular stress. Life stress, driving, work, kids, all that sucks. I get it. I’ve lived through it.
I’m talking about all that life stress plus feeling under attack. And I’m one of the lucky ones that speaks English as a first language, has white skin and a master’s degree in healthcare.
I wonder how much stress played a role in my dad’s lung cancer development. I met one ovarian cancer survivor who has a CRAZY story. She was checked for it, for some reason or another, and she had no sign of ovarian cancer. She then had this super stressful episode in her life (I didn’t ask for details) and then she had Stage IV cancer five months later. She fought like hell and is still around.
The mind. The stress. The toxic environment. I almost feel bad that I focused on nutrition for so many years - and that’s what so many people focus on. Which is great! I don’t bemoan that. But staying healthy and getting well is so multi-layered.
I’ve been worried about the stress I’ve been under. I know my dad must have had so much of it, having to work to support me and my mom. I guess he told my mom recently how bad he felt about passing the Lynch gene along. He’d never tell me that directly.
I can’t imagine.
That’s why I’m working so hard to develop a protocol and will do what I can to download as much information as I can for my family and others.
EVERYONE deserves to have access to this information. They shouldn’t need $400 for one appointment. That’s how much one “genetic expert” doctor is charging out of pocket - and doesn’t take insurance. I get that everyone deserves to make a living and be paid their worth.
But there are ways to package some information and make it more accessible.
It’s really getting on my nerve how expensive so many of these things are. I’m determined to find more economical ways for others to have at least the INFO. It will take time and a lot of resources to do anything else.
I don’t get it.
Because I was born unlucky and now can’t work, do I deserve to die faster than my wealthier counterpart who was born with the same unlucky gene?
Do I deserve to die in this country because I was a teacher and didn’t sock away a ton of money?
When did this country get so elitist or has it always been that way but because I was, in a lot of ways, upholding it and supporting the infrastructure - I can take responsibility for that, I AM part of the problem, as many of us are - and I just didn’t see it as much before?
Or is it just so overt now? And Instagram culture and Kardishian culture and all that just widely out of control now?
Do I deserve to live more than another disabled woman who lives in another area of the country and doesn’t have the friends or support that I do?
These are the existential questions I ask myself all of the time.
Do any of the people that voted for and/or funded this administration connect the dots? That voting to protect their money may be connected to our broken medical system? Does this cross the mind?
If not, how do I make those connections in a way that’s gentle enough to be * heard * so that they wake up?
Can I even do that? Am I able to make any sense at all these days? I am not quite in the full dazed mode now. Just heavy and tired. For awhile there, it was like I couldn’t make sense of ANYTHING.
Now, I don’t even know. I can carry on conversations. I can do these appointments SOMEHOW, I have no idea. The main thing that’s happened pretty organically is that each awesome doctor is in charge of a different problem. Integrative MD yesterday is dealing with the gut/motility issue, one ND tracks biochemistry and hormones, another ND is giving me IV bags and helping me get data to titrate my ideal dosing, and then I now thankfully, have that new primary doctor who can play quarterback and manage it all.
It almost feels too easy now. All that work finding these doctors is starting to finally pay off. Fuck. I hate how close that one came. I’m now able to tolerate smoothies with whey protein to compensate for the lost eggs and fish (I’m still only on 3 eggs per day 5 days per week). I’m making these pudding with coconut milk which is a great source of calories and good fats, and it’s WARM which makes me happy. I get sick of the fucking ice cream and pudding. And thank goodness, I have people cooking kosher broth for me. I couldn’t easily buy that or have non-kosher people make it because my siblings want this kitchen to be kosher so they can eat here. I’ve got the sheep’s yogurt and Columbia Gorge juices which are a couple hundred calories each and have actual nutrients in them (versus pudding and filler crap I was eating).
I adjusted it so I’m getting that base 1000 calories per day from fairly decent sources.
Damn! That took MONTHS to figure out and a LOT of people. Bestie helped me test so many products. Another friend is coordinating chicken broth delivery. I’m now able to make a wish list of foods that they will also help prepare! How amazing is that?
It just feels so quiet around here without him.
He was always so annoyed by how loud the house was! My mom is deaf (literally, she wears two hearing aids) so everyone has to holler for her to hear. I’m often downstairs but when I come up, I’d talk loud (I know, big surprise) if I wanted to be understood by my mom. We have an open floor plan (downside of that open floor plan is whoever is watching TV has to hear background noise) so he’d just turn the tv up louder and louder.
My mom is struggling to be at home without him so she’s at work, my sister’s or out. I’m used to being on my own so that’s fine. I have visitors and appointments and even a dinner party with my lovely friends tomorrow! They lost their mom really young and also have a genetic cancer thing….they know the drill, better than most.
It’s just so quiet now.
I can adjust to a lot of this kind of thing. I’ve lived all over. Loud places. Quiet places. I lived ON the train tracks at my last apartment in San Diego! Before that, in an apartment next to a bar off Flatbush in Brooklyn. No, shit, that was the place before. I lived in the city before that, next to a school, in Manhattan, so very loud too. Fuck I can’t even remember where I lived when.
And I’ve lived here where I barely hear the birds tweet. I can manage all that.
It’s the hole he left behind, not the noise, that will take so much time to adjust to.
I wish I’d said more. I know everyone wishes that. It never feels like enough. I wish I did. I didn’t realize it was his last week for real. I knew it was coming fast. But not as fast as it went. I wish I’d…I don’t know. I wish so many things.
They are cutting down my favorite tree right now. It died a few months ago.
It’s the one I stared at in my early twenties when I was so sick from the inflammatory bowel disease and nursing a badly broken heart. I’d just sit and stare out the window for hours. And this tree was beautiful, I must have photos somewhere. I can’t find it.
That’s when I learned how important it is to spend time grieving, even over having an illness, in order to heal.
It’s just so much for so long now.
I’ve been such a buzzkill for so long. Annoyed people in my family. Annoyed so many people.
It’s be annoying or die. So. Ok, I was annoying before all this. We all are. I’m just more obviously annoying. As Bestie reminds me: you take more chances, you take a lot of risks, so you’re going to fall on your face more.
I can’t believe the tree is coming down. The…ahem… developers who tore down the previous home also tore down the mini forest around it. The beautiful garden next door is also gone now.
Two very large houses sit there instead.
Trees. People. Water…nope not going there. I try not to get upset about the state of the world but it’s not easy.
MY DAD IS GONE!!!!!!! I want to holler from the rooftop! MY DAD IS NEVER COMING BACK!!!!!!
There are the tears ok I should end now. I have a two hour window and need to get some errands done, so much has been put off for so long.
I still can’t believe it.
I just can’t.