Do I go to Boston? 4.22.19

My energy has been so limited, I don’t see these bunnies often enough. They always bring me joy!

My energy has been so limited, I don’t see these bunnies often enough. They always bring me joy!

I wondered what I was up to a year ago and found this photo in my phone. It’s from Earth Day 2018! I can’t believe this is from only one year ago. Pre-mohawk. Pre-so many things.

I can’t help but wonder if I’ll be around in another year. Or, if I am, what my health will look like.

There is this low-level terror that I’ve been living with for so long - it’s hard to convey in words. I can smile and laugh, look put together, but underneath, I’m constantly on edge. As I’ve mentioned before, I have a constant monologue running in my head about my health.

Should I give myself another IV bag now? Or one later? Can I get away with eggs today? Should I email that doctor again or wait? Is the trip to Boston too much at this time? Can I make it if I’m still not on TPN at that time? Will the trip be worth it? Will it be too hot there? Should I start bringing men to my doctor appointments or will they still not listen? Should I try for Stanford hospital first since it’s nearby? Should I keep trying new GI docs here? What was that pain just now? Why can’t I get to an MD who will help me? Is this everywhere or is it especially bad here in Seattle? How sick will they let me get before intervening? If it gets worse, can I pull it back? Should I try the elemental nutrition again? Do I? Should I? Will I? Do I? SHOULD I? WILL I?

I’m sure it’s so hard to imagine from the outside looking in. I get that. I can’t even believe this is my life and that the medical system is as shitty as it is! I mean, what the HELL is going ON in Seattle? Why has it been so hard to get decent care? Why has my dad been getting the same run around?

The hardest part is knowing that I’ll never really be sure whatever choice I make is the right one - until later when it will be obvious if I chose the right path, or the wrong one.

I don’t know what to do! I just updated my medical case on the website. I added the doctor referral form. I called my friend that said she’d go to Boston with me in early June. I’m going to wait to contact that new primary again - how sad it is that I feel like I have to play it “cool” as a medical patient.

I feel so helpless. I’ve done so much and I still feel like I’m spinning my wheels.

Walking on the treadmill most evenings like a fucking hamster since I have no choice but to take in as much as I can orally until we get the IV thing figured out.

How much longer can I tread water? Both mentally and physically?

I’m so nervous I waited too long. There is so much compassion fatigue happening on the Internet. And so much noise. Can I even get my story heard?

My biggest fear all this time has been slowly withering away in this house. Shrinking and shrinking until I’m just a small wisp of my former self, trying to yell but my voice so tiny, nobody can hear me.

What if I don’t make it? I know I’ve been cavalier about death over the last few years. But now that I’m struggling SO hard to get the right care and I can’t figure out why it’s been so damn hard, I’m getting really scared. I can’t imagine if they told me “you’ve got six months.” I don’t know that terror. I only know THIS terror that’s about the unknown. Not knowing what will break down next inside of me. Not knowing if my dad’s next hit will take him for good.

My nurses and dietitian friends are SO upset that I can’t get the right care.

One of my nurses offered to call my doctors and advocate for me. She said she’s had some unexplainable GI issues and hasn’t been able to find the right docs either. And she is a nurse! Now she is pregnant so it’s even more important that she get a handle on things.

I keep hearing these stories over and over again.

I’m watching my dad walk around with a cane while coughing badly - he was in Crossfit just a few months ago! He seems beaten down and I hate that. He did everything right. I may have gone down a road less traveled. But he paid his dues! He married, bought a business, had kids, worked his butt off for his family, never committed one crime, paid his taxes on time, checked off all the “good citizen” boxes.

But still. He was left with the cancer still in his body all these months.

If they treat him this way - a white older dude - then what chance do I have?

I look at these old photos and I can see the changes that I’ve gone through. Not just physically, but mentally and emotionally. This journey takes a toll.

I’m trying not to freak out. I’m trying to focus on tangible tasks. Check things off. But the fear swirling around inside of me is always there. and getting bigger.

I’ll admit I’m losing steam. I’m so so tired of fighting to be heard and believed in this system. I worry my dad is losing steam as well. We’re both so beaten down - these tough athletes brought to our knees. Literally. My dad recently collapsed on the floor from the pain in his leg from the clot that should not have formed had he been on anti-coagulants after his lung cancer surgery.

This guy did Ironman three times - in his 50s! He’s only 74 now and still in amazing shape. He does not collapse on the floor in pain unless it’s REALLY, REALLY bad.

Can I do it? Can i find the right people at the right time? Can I make the cross country trip? Can I keep living on so little? Can I can I can I can I can I….keep going?

I know that I’m sounding harsh to the outside world in these posts and my Facebook posts. It’s just that I’ve been warning and warning for so long now that the medical system is falling apart.

This is what I’ve been worried about for a long time. That I’ll start to lose my grip. That I won’t be able to handle the medical system anymore. That I won’t be able to do ANY of it. I’ll just lay in bed and stare out the window until the body decides it’s had enough.

I don’t want that! Not at all. But I can see the allure. I can see how laying down in a snowstorm for just a few minutes must sound like the most delicious thing in the world.

But I can’t. I have to stay focused. I have to keep advocating for myself, my dad and others. It’s this thin rope now between me and the regular world.

I’m glad I found a photo of the kids for today. Their smiling faces keep me grounded. Keep me focused.

I realize it must be hard to read the posts where I’m so frustrated and angry. But those are better than these posts. The ones where I’m getting scared I can’t go on are much, much scarier for me than the angry posts. I need that FIGHT in order to stay alive.

I have a friend who just had cancer surgery - another one started chemo last week. I connected with both of them and thankfully, they’re both doing well and feeling good mentally.

One of them told me, I’ll be cancer free and back to it in six months!

And that might be the case! I can see it going just fine. But of course, I’m so jaded now. I can’t help but worry. I always worry, it’s my nature. But this kind of worry feels like a sickening dread. He still has so much faith in his doctors and the news he is getting. It could go just fine - I have lots of survivor friends who are doing great years after their cancer.

For people like my dad and me, though, too many hits can take down even the most stalwart athletes. Between the two of us, we’ve had 7 cancers! Dang, I really should pitch our story somewhere. People would love to know more about him. He really is inspirational.

I have to keep fighting. For my friends who are just starting their medical journey. For my dad. For the kids. For other medically fragile peeps.

I have to keep at this. Even when I have no idea how I will.

I must.

Much love,

Jules