patience vs. extreme patience

If these past ten months were an exercise in patience, then the past two weeks have been an exercise in extreme patience. And trust in doctors. I had been feeling so good. I was ready to begin my life again—but I was swiftly catapulted back in time to February and December 2010 when I laid stiffly in my hospital bed, connected to IVs and drainage tubes. Again, I needed help making it to the bathroom. Again, I was in pain. Again, I could barely keep my eyes open. Again, I wasn’t allowed to shower for nearly a week. Again, I was up all night vomiting the nothing in my stomach.

These more severe side effects of surgery were short-lived, and I somehow made it out of the hospital in record time. But when I got home I felt like I had felt back in the spring, weakly padding around the house, pushing myself up from the couch, not hungry, sleeping sitting up. I left the hospital not with zero tubes, like I had hoped, but with both tubes (my PICC and lung catheter) still intact. Why did I have the surgery again? Oh yeah. So I could get some of my quality of life back. Not as advertised early on.

Still, I have been extremely patient. I think some of this was due to the distraction of having my sister, aunt, and boyfriend around to help out, keep me busy, and occupy my mind. Sure enough, in the past week and a half since I left the hospital, I finally had my PICC line taken out. That took a minor miracle, a nice nurse, and a prompt doctor’s call back on a Sunday. I took one of the most amazing showers of my life—finally able to wash out my week-old hair with both my arms since I had no PICC to keep clean and dry. I have called and emailed my doctors panicking about my still-high drainage volumes, but I have watched them gradually decrease… they’re not optimal yet, but I have an appointment to get that tube taken out next week. Dare I believe it? That the surgery might finally be working? I have had this stupid tube in my chest since late April. I have changed the way I dress, the way I sleep, the way I shower, the way I move to accommodate this thing. Could it really be almost time for it to come out?

Against all of my pre-surgery bedfellows, I’m preparing to go on a little trip this weekend with some friends. I won’t be able to get in the hot tub like I had wished, I still have to bring an extra bag with my drainage supplies, and I’m not quite up to doing much walking let alone hiking, but considering two weeks ago at this time I felt like I was hit by a bus, I think my patience has paid off. Extreme patience.

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4 Responses to patience vs. extreme patience

  1. Lisa Martins Skaggs says:

    Hi Lindsey,

    I have been wanting to write you for ages. I am 39 and have carcinoid. My road has been tough, and you have been an inspiration to me on my darkest days. It has been hard to read how hard things have been for you these past months, but I have every hope your extreme patience will pay off. I am just out of the hospital after an almost two week stay following a carcinoid (blood pressure) crisis, and I feel much as you describe. But I know things will get better for both of us.

    Thank you for sharing your story and putting words to so much of what I feel.

    Much love, Lisa

  2. Sara says:

    Here’s hoping you can get that drain out soon and your surgery was a rousing success. Have a great road trip! You’ve earned it!

  3. Cathy says:

    Enjoy your road trip. Hot tubs are over rated. Have fun being away in nature. I hear the stars are amazing out there. Wishing you a weekend of JOY…And more of them to come….hugs and blessings Cathy

  4. Kelly Bruhn says:

    We are thinking of you every day!! We know you have a lot going on over the next month…making some of your favorite Matzah Ball Soup!! Enjoy your road trip!

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