Almost 12 Bleeping Years

Early in my myeloma journey (nightmare, adventure, health scare, eye opener, what have you), my specialist said to me that the goal was to have me live long enough that I’d die from old age or something other than myeloma. I actually appreciated this clear and concise messaging. Well, here it is, nearly 12 years since my diagnosis and I’m still alive and kicking.  I’ve been on the same treatment regimen for over 6 years and frankly, I’ve gotten a bit spoiled about my myeloma status.

Reducing my oral chemo, and dreaming of the future

We’ve recently dropped my oral chemo since my numbers look so good and now, I’m only getting a monthly infusion and some steroids. Totally manageable and doable for as long as it works. This has allowed me to dream a bit about what my senior citizen mode will look like.

I think in my Port Trilogy, I wrote about how when I was wheeled into the operating room to have my port removed, they strapped my arms down in a bright white room and I was worried that that room might be the last thing I see. I thought perhaps my luck had run out. Since then, I have not had such concerns about my impending death.

Other health worries, including headaches and blood pressure

However, something has changed recently and that’s my blood pressure and chronic headaches. I’ve had constant headaches for 2 or 3 months now. They vary from minor to painful enough to prevent me from sleeping. We did an MRI of my head and neck; the results were fine. Nonetheless we need to get control of them.

We also need to get control of the blood pressure which may or may not have a relationship to the headaches. My wife discovered my high BP purely on accident. Last month after my monthly treatment, I told her I felt a bit nauseous, not a typical thing following treatment. She decided to check my BP and it was sky high. We followed up with two oncologists, my cardiologist and nephrologist and all said we need to get it under control. My nephrologist was most concerned, given high BP could further damage my already damaged by myeloma kidneys. We’ve added a couple of blood pressure meds and are trying to calm it down. We’re getting there.

Stressors of life getting to me

But here’s the thing, I’ve been real stressed lately. The normal stressors of life are getting to me. I’m on edge of late and I’m chalking up my BP and headaches to stress and disappointment.

Disappointment you ask.  Yes, in myself. I definitely spend too much time evaluating my life and wonder what the heck have I done. Thank goodness I have a therapist I like.

But I’ve noticed that my perhaps over-confidence in my ability to manage my myeloma has been replaced by my fear (paranoia) that I’m going to keel over one day while simply walking to my car. This is new for me. Every time I leave the house, I put on my med-alert chain, just in case someone finds me laying in the middle of the street. I assumed that with my myeloma I’d see the downward slide and could adjust and act accordingly. In other words, I believe I have some control over the myeloma outcome. With my myeloma, I've relapsed a couple of times. And I knew it each time. I was increasingly tired, my body ached and I'd see the changes in my lab results.

How will I know if I'm not doing well?

With high blood pressure, I feel absolutely fine. If I hadn't felt nauseous that one time, we might never have known. So how would I know if I'm not doing well?  Thus, if I keel over, it'll be a total surprise to me. It feels like I have zero say in the matter. It’s just going to happen suddenly.

Yes, not a good mindset. And also not good when I’m already overstressed and overly reflective on my wins and loses in my life journey. It's a vicious circle. I need to de-stress, but then I stress and add more stress, not less stress. It really is terrible and makes me feel hopeless.

Making visiting my family a priority

I’ve been thinking about visiting my mom and brother who both live in Colorado. I’m in California and haven't been to visit in way too many years. I've been dragging my feet to simply book air reservations. I woke up the other day at 5 AM and the first thing I told my wife is I need to see my family. I booked our flights that day. We’ll be traveling next month. I’m very excited. My niece just had a baby. My amazing mom is turning a young 87.

My wife asked what if I don’t have the BP and headaches sorted out by then. I’m going anyways I told her. I can’t wait. For my mental state it’s number one on my list.

I want to apologize if I’m over sharing, but my therapist is off this week, so I needed to share. I am coming up on 12 years since being diagnosed which has far exceeded my expectation in 2011 when I was diagnosed. I’ve always said the mental challenges can be more difficult than the physical. I’m not sure I fully believed it, but I sure do now. I’m working on it. Thanks for listening.  Hopefully you all are in my network.

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