The Day After

I remember Thursday - kind of. I was supposed to go home. It had been a hell of a day - and a night - and another day with neither sleep nor a handle on pain control.

There was no clock. It made it hard to place what was happening when and just how unlike the plan this recuperation was.

While I grappled with total inability to sleep (think escape), the doctors grappled with the unknown: the mysterious source of the excruciating pain in my breastbone . . . not connected in any obvious way to my breast surgery itself.

In pre-op pain wasn't an issue and in post-op I reported it as a 10.5 on a scale from 1 to 10. Wednesday night a resident on call was called multiple times by the nurses, but never responded.

I was in bad shape

It's hard to treat what you don't understand granted but from a patient's point of view it's hard to cope with what you don't understand. A suddenly fractured sternum Is what I'd feared we had. More than one doctor suggested heart issues. Only one suspected some Gastrointestinal issue. Nobody mentioned the word cancer.

All I cared was that somebody had to find out what was going on behind the pain. Instead what we found out was how to manage it.

After there was "something off" about an EKG, a second one was asked for. Both were inconclusive yet different from a pre-surgical chart.

The cardiac resident went to talk to her boss about something heart related while the surgical resident suggested an upper GI issue but that wasn't perused. The cardiac guy never did show up when he was supposed to follow up two days in a row.  I never got an explanation of that either.

An IV pump arrived after a full day. I got to push a little button for on-demand delivery of a new pain medication, then another.

To demonstrate how serious my symptoms were I opted for a big needle in my backside rather than wait the required time for the medication that was being used unsuccessfully to keep my stomach contents - jello and water - in place.

Writing a week later I understand that this was not the pain I was supposed to be feeling, nor the panic. But at the time it was both overwhelming and terrifying. Worse; I don't know what could have been done to keep it from happening.

Looking up

Things are better now. I can't say I'm normal but I'm at the point I thought I'd be last Friday (two days after surgery) but it's been over a week.

The rest of the days following surgery run like an old flickering movie in my mind now. But the problem with the movie is that during some periods - maybe those of most intense pain perhaps - there are gaps. My daughter tells me things I've supposedly heard before. They're new to me.

Having the energy and intellect for Monk and Psych rerun marathons and not much else. I'm declaring the rest of the month vegetating time because face it, I'm planted here for the duration.

Comments

[kdpaine]

Oh sweetie, I'm so sorry. You need to be seen by different doctors. what a nightmare! can I talk you into coming up to Dana Farber? anything I can do to make it better? I feel like I should have warned you.. surgery for me was much worse than chemo and radiation combined. the older body doesn't take well to being cut open :)

[Otenth Paderborn]

What a nightmare! I'm glad you're recovering. Thank you for posting about how it's been.

[Jeanne Breault]

What an incredibly frustrating ordeal this has been for you...not to mention painful!

When I read your description of the pain, I couldn't help but wonder what happens to us that we might not know about while under anesthesia!

I don't understand how these kind of things can happen:

"...the surgical resident suggested an upper GI issue but that wasn't perused."

and

"The cardiac guy never did show up when he was supposed to follow up two days in a row. I never got an explanation of that either."

I had a lot of experience with these types of unanswered questions when my mom had complications after carotid artery surgery two years ago. A one night hospital stay turned into three weeks and then having to stay with me for a month! Lack of follow-up, no answers to questions, docs not showing up, etc. I contacted administration and asked for a patient advocate, but didn't get that, either! I'm a pretty assertive person...can't imagine what it's like for someone not quite so demanding?!

Sad to say, but it's a miracle patients come out of the hospital alive! And I'm not talking about the ever-present risk of staph infection...I'm talking about plain, ole common sense diagnostics! It's as if a patient or family member's suggestions/questions are deemed irrelevent because "we're not the experts." Well, you know what?! Maybe we are!! :-) (I love that my primary care doc views it that way!)

In your spare time, do you want to start a blog on good hospital care?! It shouldn't take much of your time...just a blank page...lol! Although seriously, it could be a money-maker!

I'm SO glad you're now taking TWO steps forward and only ONE back! In time, not soon enough, that will be NONE back! YAY!

Hang in there...I think you still have a lot to say that a lot of people need to hear! :-)

[Tony]

I am relieved that you are starting to feel better but am angry at the lack of attention given to you by the docs there. But that's another issue.

I hope you feel better exponentially every day. My thoughts and prayers are with you and if there is anything I/we can do, just name it sweetheart.

Best wishes,
Tony

[jonny goldstein]

Wow. I guess those good vibes I sent your way didn't get there. Here's some more.......Let me know if they do not arrive soon.

[Kara Soluri]

I know I'm pretty much a Twitter dropout, but I think of you often and wish I had a magic wand to make the pain go away. All I have are my thoughts and prayers for your healing.

Also, your sharing of yourself and your journey continues to amaze me. I'm sure you feel at least a little pressure to keep up with it all, but you getting stronger is most important.

Maybe being a potted plant for a while isn't so bad. I'm gazing out my window at an oak tree, and it looks awfully beautiful just standing there absorbing energy. You look beautiful too. Take care, Susan.

[Susan Reynolds]

What great blog readers I have. You're like one big support squad cheering me on.

I'd love to come to Boston Katie, but hope I don't need to - at least right now. Besides, I hear that I have to be fully healed from this before we can start anything else, so let's hope.

Kara, the potted plant thing is so ME right now. And you always make me smile. I'm good sitting here absorbing for a change :)

Jonny, I got the vibes but the bad mojo in DC was enough to cause interference. Now that I'm back home I'm putting them to work.

Tony can be in charge of making sure I don't decide to get rebuilt ever again and if I do Jeanne can help my daughter advocate, though i do admit as I'm writing this, two weeks after surgery I'm feeling sore and nauseous but not anything like last week.

In fact, Otenth, I felt well enough yesterday - or bored maybe - that I ventured back into Second Life, which I had not done since the day after diagnosis in December. I take it as a good sign.