Dark Clouds in the Way

Something’s wrong and I’m driving myself crazy over it. This time last year I ran 2, ½ marathons and aced my master’s papers with 95%, one of which was published. As far as I know, I remain NED. But I am seriously questioning if the price is worth it. My dearest Dr. Tequila chose to take a sabbatical so I’m feeling lost and alone in making decisions. And that nobody in the medical system really cares to help me figure it out.

Here’s my day for the last two months:

Wake up with alarm at 8 am, take meds and fall back to sleep – sometimes until 10-11 am despite taking a stimulant.

Drink coffee, putz on phone, computer, TV.

Try to go for a walk, social activity OR errand – if I don’t get out before 11 am, it won’t happen.  Or do one simple task – put away some laundry, make the bed, even just take a shower… then I’m DONE.

Lie around, whinge, complain, watch Netflix.

Force myself to get up and make supper - simple/easy as possible.

Go back to bed….

Fabulous quality of life…..NOT.

I believe it’s some sort of autonomic neuropathy or dysfunction. And chances are, it’s related to the 89 rounds of chemo/targeted treatment I’ve had thus far. My protocol is known in Her2 circles to cause neuropathy. And heart problems. There’s also the question of 3 concussions in a year. Though I’m sure postural hypotension caused the last. It’s progressive. If it was just the concussion(s) evidence suggests that it would improve with time and rest. But it just keeps getting worse.  Before I write too much more, yes I’ve had a head CT and it was OK.

Here’s what my sucky Q of L is about….

• After about 2 hours of being upright I start to get a headache, my brain feels foggy, I feel like I could fall asleep standing, and gravity is screaming at me to lie down again.  If I move around too fast, I feel lightheaded and dizzy and if I wait too long to lie down, that’s how I feel until I fall asleep.

• I could care less about food – I often buy special treats just to force myself to eat. But food doesn’t taste right. And every time I eat or drink more than a few sips, I feel nauseous. If I eat a few bites too many or guzzle too much fluid….I vomit within the hour. Or have reflux/regurgitate. However, I’ve gained weight as I’m pretty much relegated to doing nothing.

• My blood pressure drops dramatically when I get up and sometimes even just at rest - by 50 mmhg or more. Sometimes my vision gets filled with black clouds and I hold on for dear life. My heart also races when this happens – it can go up by over 30 bpm just by standing up. I feel like I’m in the Olympic 100m plodding up the stairs.  I cannot tolerate any inversion of my head. I cannot tolerate pushing my heart rate with exercise

• I feel weak. Even my hands. The fatigue is unreal – and I KNOW fatigue from chemo.  

•  My hot flashes are back full force and I haven’t had them for 2 years. Sometimes I break out in a sweat and I wake soaked. When it was 30 degrees outside, I thought I was going to melt after 10 min. 

• Sound and light can hurt. I have ringing in my head 24/7.

A lot of this wouldn’t surprise me if it had been severe right after the concussions and slowly resolved. It seems to be getting worse. Some of that is maybe placebo caused by fear/frustration. But even when I get motivated briefly to push the limits, I’m back to bed struggling.

Pressure stockings, an abdominal binder and 3-4 litres of fluid a day help the blood pressure – sometimes. But don’t help the bone deep fatigue, weakness, dizziness, fogginess, appetite, and poor activity tolerance. And for some dumb reason, I can’t seem to pull off the will required to follow the regime. I need a 24/7 coach, cook, therapist…. Superman is burning out I’m sure.

An echocardiogram, EKG and multiple labs show nothing. A head CT was fine. The locum oncologist (Tequila is on sabbatical) doesn’t seem to care. Acted like such a drastic drop in quality of life wasn’t a problem – it’s not cancer -  and that I should go to psychiatry…yup really…to find out if it’s side effects. I think they meant to say it’s in my head…. They’d be worried about serotonin syndrome: HIGH blood pressure, goosebumps, fever based sweats, shakiness, hyper-reflexia, agitation.  And I have the opposite – LOW blood pressure, hot flash sweats, shakiness from weakness, NO deep tendon reflexes, lethargy. Last time a Dr. made the mistake in diagnosing SS, I ended up in ER 2 weeks later suicidal & sickest with depression I’ve ever been. I’ve been on this medication regime over 3 years. It’s NOT that. I was running ½ marathons for goodness sake.  I hopefully will get to see the euro-oncologist again but who knows if she'll really refer me. She DID send my echo request to Sechelt where it sat a week before anyone called me.  An aside – now my psychiatrist at BCCA has left and I must start again with someone new. Anyone in mental health knows this can be tough. I’m deflated.

I’m getting excessively sad and frustrated at my limitations and symptoms; especially because no-one feels there is any urgency. It’s apparently OK to lie in bed 20-22 hours a day with awful symptoms (that freak me out) and Dr. Google.  I honestly wish I could just walk into some great hospital and page Dr. House & his team. Do any/everything to tell me WHY??? and WHAT??? I can do about it. When I started as an OT, people like me went to the hospital, had a complete work-up with diagnosis, and were provided with support/rehabilitation to get them back on their feet. Now we waste away at home waiting, waiting, waiting for answers, struggling to shower or get a simple meal on the table. That’s humane?

Please, please, please don’t tell me about some miracle cure or treatment centre. I’ve done my due diligence in researching CAM.  After 6 years of watching friends die when they choose that path, I’m pretty anti-WOO. I’m not going to defend myself but please know that’s my belief system. Respect it. I believe in evidence based medicine; if the evidence is lacking, it’s not medicine. Additionally, thinking about rainbows and unicorns will not help me. I’ve done 25 years of various therapies. I AM stoic, accepting both the good and the bad. And right now ........ it just sucks.  

Hopefully I can follow this up with a post about the good things. There are a few but the clouds are in the way right now. And I honestly don't know what anyone can do to help. In case you ask, I'll have no idea. 

Despite how awful I feel, somehow, when there is something VERY important - an advocacy role, a bday dinner, I have been able to pull it together to survive a day or two. And since all I do otherwise is lie around, I know that I'll have time to pay the price. And without the odd thing, my life is pretty empty....perhaps taking term off school was a poor choice.