And one less tumor! Can you tell I’m very excited that it’s out of me? 🙂
On Thursday, I arrived at the hospital at the cruel and unusual hour of 4:45am. Surgery was scheduled for 7:30, and though not a morning person I was pretty happy to be the first procedure of the day. Still, I spent the night before stressing out about whether or not I’d hear my alarm and get up on time, and probably slept less than two hours.
Between lack of sleep and mixed feelings of excitement and absolute terror, the morning of the surgery is a bit of a blur. I have vague memories of meeting with the surgeon, the anesthesiologist, and enthusiastic young med students. I remember the anesthesiologist promising a “cocktail” for relaxation several times, but I don’t remember ever getting it – the next thing I know I was waking up in a recovery room and the surgery was already behind me!
Around 2pm I was moved to an observation area, where I could have visitors, and spent the remainder of my hospital stay. At first the pain felt like a cramp in my side much like one gets from running – persistent and annoying, but on a scale of 1 to 10 maybe no more than a 5. My afternoon was spent entertaining visitors – a big THANK YOU to all who stopped by! I hope I didn’t say anything too embarrassing (or flash my scars inappropriately!). I remember babbling away a mile a minute thanks to the morphine, which I stopped after three doses because I really didn’t think I needed it. Looking back, this might have been a mistake, but I was really hoping to get some rest and I know that opiates make sleep near-impossible for me. I also refused the Vicodin pills for the first day for the same reason.
But even after a sleepless night pre-surgery, I was not sleepy and became more and more uncomfortable just lying there. I kept the nurses busy in the wee hours of the night, helping me walk up and down the corridors. Standing was the most comfortable position for me, and walking is supposed to help the carbon dioxide from the surgery dissipate, so this was encouraged.
For most of that first night, the pain from the CO2 was far worse than the pain at the incision sites. The pain from the incisions feels like a really persistent cramp like one would get from running or swimming – it doesn’t really hurt all that much, it’s just constant and uncomfortable. The pressure from the CO2 is far worse – it presses on the diaphragm and causes referred nerve pain up the chest and into the shoulders. It comes and goes, and every time I think it’s gone for good it sneaks back for another visit. This is expected to last anywhere from a couple of days to a week.
I had one really frightening moment around 4am when I tried to lay on my right side and I felt the CO2 rush up toward my diaphragm, making breathing impossible. Screaming, however, I managed just fine and within seconds I had a half-dozen people tending to me! Once I was standing up and on oxygen, I could breathe again and was fine, but this was the most disturbing moment of the whole experience and I really didn’t have any desire to lie down again after that.
Around 7am the day after surgery, my surgeon stopped by. She told me that I should be taking the pain meds even if I didn’t think I needed them, because unlike most laparoscopic surgeries, I have sutures instead of just glue or steri-strips. Apparently my left adrenal was surrounded by fatty deposits, which she said really surprised her as they are usually not found in people who are not overweight. Since the whole gland has to come out in one piece, she had to make a larger incision to accommodate this. She then went on to describe the tumor and gland as “beautiful” and told me she meant to take a photo of it to show me but forgot! I wish she had, I’m pretty fascinated by this stuff. She will have the pathology report to go over with me on November 4, and my adrenal is going to be placed in a tissue bank to be part of a research study.
After my visit with the surgeon, I took her advice and went back on the pain meds – first morphine, then Vicodin, neither of which really did all that much. Another doctor from the surgical team stopped by and ordered some Toradol, which worked beautifully – trouble is it’s injection only, so only available in the hospital. Late in the afternoon I was released, with more Vicodin (that I swore I wouldn’t take, but that changed pretty quickly).
Coming home was difficult. While overall I’ve been really pleased with everything about the hospital at UCLA, the journey from the hospital to the parking garage is not very patient-friendly. The sidewalk is inlaid with brick and the wheelchair ride was BUMPY and really shook things up. Once at the entrance to the garage, there are no ramps – I’m not sure what patients who can’t walk do about this, but I just began a long, slow walk with my friend to her waiting car. This led to my second most frightening moment – the moment we got to the car my heart began fluttering really quickly and inconsistently and wouldn’t settle back down for quite a while. I waited it out and it seemed to slow down, so rather than going back to the hospital, I decided it was time to try going home.
Throughout this whole crazy trip, this is always the hardest moment for me: the doctors can’t tell me “you HAVE to have someone stay with you,” and they can’t keep me in the hospital any longer. I live alone, in a tiny place that doesn’t have room for another person to sleep. I don’t sleep well in other people’s homes, so even though staying with friends is an option, I’m not willing to do it. I know that after any procedure, rest is one of the most important things I can do, which means I really just want to be in my own home. And being left alone, in pain and with a head fuzzy from drugs, feels pretty vulnerable even though I’ve got good people looking out for me and a phonecall away on speed dial.
The upside to living in such a tiny place is that it’s easy to get around – there’s always something to hold on to, even if it’s not exactly up to hospital standards. Going from sitting to standing, or the other way around, has been amazingly difficult – I’m very puffy from the CO2 and fluids that they filled me with (three pounds’ worth!) and my stomach muscles feel like I’ve done about a thousand sit-ups. In addition, my leg muscles have been working overtime and feel like I just finished an 18 mile hike.
One thing I hadn’t expected was how uncomfortable sleeping would be. Ordinarily I sleep in a loft, which requires climbing a vertical ladder. Obviously this is out of the question, so I’m stuck with the sofa. Which, while comfy for hanging out or taking a nap under ordinary circumstances, is low and squishy and not at all easy to get in or out of with all that muscle pain. I managed to come up with a way to sleep sitting up, involving a bizarre combination of pillows, the sofa, and a dining chair, that actually worked out really well, so there is where I will be spending the next few days. And after two sleepless nights, I got in a good twelve hours of rest last night, interrupted like clockwork every four hours for more pain meds. And this morning I felt well enough to begin my day with my customary cup of high-octane coffee – which I’m taking as a good sign that I’m feeling better. Even if my stomach muscles don’t quite believe it yet 🙂
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Now for the on-paper stuff.
Blood pressure: The first night, I was seeing blood pressure readings down in the 140s/80s – I haven’t seen any that low in almost 10 years. But yesterday fluctuations started, and began to stay on the high side – I’m seeing 170s/100s, which I’ve only seen that high back when I did the salt loading test, alternating with 150s/90s, still higher than my usual high-normal average of 144/92. My surgeon emphasized that it will take some time for things to normalize; the conventional wisdom is that once the offending adrenal is removed things should stabilize right away, but this is not true of everyone, especially not those of us who have been sick for so long.
Potassium: Coming out of surgery my potassium dropped to 3.2. My surgeon waited until the next day before giving me any supplements, she had it checked every 6 hours and it stayed at 3.2 the entire time. Yesterday morning I was given 40MEQ of potassium, which brought it up to 3.6, which is not optimal but “normal” enough to release me. I’m still on 20MEQ a day of supplements through Tuesday, when I’m getting it checked again.
So, I’m taking the fact that my potassium did not completely tank as a sign that positive change is going on. I am, of course, a little worried that this may not be the complete solution – that medication will still be in my future – but it’s too soon to know so I’m not going to dwell on that. As one of the doctors explained to me, just because the gland has been removed doesn’t mean the excess hormones are completely out of my system yet. Add to that the stress of surgery and pain, and it may take some time to see those numbers come down.