Sep 01 2011

Actual nearly-on-time upate

Worst experience yet here at St. David’s.  Just goes to show once again that even good hospitals can have bureaucratic screw-ups and you can’t ever relax your vigilance, and even then sometimes things will come up.  I called the surgical oncologist’s office (Dr. Cherico) last week, worried about the whole pain management issue while in the hospital, and they assured me that they had discussed it with Dr. de Celis’s office (medical oncologist, currently de facto primary care physician though I’ll have to pick one of those eventually, definitely on his recommendation) was going to be taking care of all of that.  OK, good.

The hospital called me for the standard slew of pre-operative questions later last week, and I told them about the pain management issue and they took down a list of all the drugs and dosages I was currently on. They knew Dr. de Celis was going to be taking care of it, and that I was going to be at least an overnight stay if not a few days stay according to Dr. Cherico (the surgical oncologist) due to the circumtances (only a month out from chemo, being on steorid drugs, lack of stable mobility, etc.) Good.  Ok.

Then I got paranoid on Monday, so I called Dr. de Celis’s office, got his assistant, and explained my concerns to her.  She assured me that they knew about it, and were going to write the orders, and it would be taken care of.  Ok, yay!  I couldn’t think of anyone else I could call that would have anything to do with this, so I was as calm as I could be on that front even though I really wasn’t looking forward at all to more pain just when I was starting to get a lessening of all that from the steadiness of the pain regimen and the OT and PT exercises I was doing and just the general up and moving around and healing that was taking place.  It seems like the past two years have been Sisyphean in everything that has happened to me and I’m so very very tired of rolling that rock.

So we get to the hospital a bit late but that’s not a problem, we go through admissions quickly since we’d done the pre-op over the phone and they put me in a room.  Dr. Cherico comes in, asks if I have questions, we talk again about Dr. de Celis writing the orders for the pain stuff and Cherico knew about that concern already and would give de Celis a call on that as soon as he left the room to make sure, and to reminded me expect to stay at least overnight.  Right. Ok.  I ask a couple more questions assuring they would remove allllll the breast tissue from both sides because I really didn’t want to have to do this anymore, and he agreed that was a top priorty and that he was also going to be removing the group of lymph nodes on the right side (the same that were removed last time on the left), and wasn’t planning to remove any more from the left side, just the remaining tissue.  (I was also told by one of the nurses that Dr. Cherico was the one who had removed her gall bladder and was considered by those who worked there to be the top surgeon in the place, so that was another reassuring bit.)

Then, the Recovery Room.  Ahh yes, you may remember from the first surgery back last year that that part was the worst part of the whole process, and here it was again.  The doctor in charge there apparently hadn’t gotten the many messages about getting me to my room and onto my standard pain regimen as quickly as possible, and therefore wouldn’t let me leave until my pain was “under control”.  As clearly as I could through the agony and blurrines of post-op awakening I begged and pleaded with them to let me go to my room and to please give me my normal doses because this wasn’t going to get any better as it was, but who in those areas listens to a patient coing out of an anesthetic fog? No one, that’s who.  After keeping me in agony for THREE HOURS LONGER than they should have, they finally gave up and decided to put me in a room since they couldn’t think of anything else to do where they were and the doctor down there wasn’t going to give me more than the 250 mcgs of fentanyl she had already given (I’m currently on 900 mcgs and yes I know that would normallly knock out a horse (but remember, Special Medical Snowflake).

On the other end of the fuck-up, fron the time of the consult with Dr. Cherico a week and a half before the surgery, we knew it was going to be an overnight stay and as you can see above that was repeated with each phone call.  I’m not sure who screwed up that part, but the fifth floor nurses didn’t even get told I was needing a room much less the overnight part until ONE HOUR before I was sent to the room.  They were literally running up and down the halls even after I got there, trying to get everything together that I needed as I was moaning with pain (the transfer between beds was particularly hideously painful).

My poor folks (Dad, step-mom, step-dad, and Nathan) Basically had to spend an entire afternoon and evening not being told much of anything, so I’m sure it was anxious-making for them as well, especially after it started to become apparent that someone had messed up somewhere.  Today (now yesterday) once they found out they started calling and lodging complaints, so I’ve been visited severaltimes by people including the manager of the post-op recovery room area with apologies and we were just following policy and whatevers.  My response has consistently been I called and told people ahead of time what needed to be done, and that should have been communicated, and when they called Cherico and heard that de Celis was in charge of pain management they should have called him and gotten the story correctly.

On the other side of the equation, the surgeon did tell them that the surgery went very well.  They got the mass, and 2800 mg of tissue from the right (which he said “that means a large breast”) and the 1000 mg that had remained on the left side from the last surgery.  Apparently I made him work a bit to get it all out, but it was a success and the mass was hard, which when I asked what that meant he said it could just be dead cells but he wouldn’t get the pathology report back ntil tomorrow (which is now today) and also wouldn’t know if the lymph nodes tested positive until then.  He also said they didn’t have to take muscle.  If the lymph nodes tested positive that would mean we’ll have to be more vigilant, since it highly increases the chances of more metastases.  Since we were planning on scanning every two months and continuing the anti-estrogen therapy and bone treatments anyway, we’ll be doing the first steps of what we can on the prevention side even if that is the case, so you, dear readers, will know more about that when I will.  If they test negative, of course that’s much better news, but since my cancer is genetically based that doesn’t really lessen the vigilant side of things.

Everything is draining as it should, I’ve already sat up for 45 minutes or so and stood up to go to the bedside commode, and am moving both arms (painfully), and my chest feels like it’s been peeled open, hacked on, had (non-essential) organs removed, and put back together.  So how was your day?

2 Responses to “Actual nearly-on-time upate”

  1. skzbon 02 Sep 2011 at 2:07 pm

    Sheesh. That is really infuriating. But thank you for posting. I hope we are finally done with this fucking cancer, and you can get on with your life. My thoughts are with you.

  2. Allysonon 05 Sep 2011 at 1:08 am

    *hugs*

    Been thinking about you while I was out of town this weekend.