On Becoming A Surgical Drain/Human Chimera

So I needed a mastectomy (because of lymph node involvement), then chemotherapy, then radiation. The plastic surgeon also needed to place an expander under the skin to make reconstruction easier later. The mastectomy was June 16th, and went very smoothly. I had never had general anesthesia before, although have seen it countless times. What a strange and wonderful thing...They pushed something into my IV, it burned a lot, then they started shaking me and saying "Wake up Catherine! Your surgery's over!" My first word, seriously, was "Already?" And so it was. I slept off the anesthesia, ate a little dinner that night, took pain meds, and was ready to go by lunchtime the next day. But...I had The Drains.

They are these little plastic bulbs that are attached to a tube that ends in the surgical wound to drain any fluid from all the inflammation due to surgery. One to two weeks of The Drains usually does the trick. My immune system, as usual, was not aware of this ballpark rule. The main issue with The Drains is that a: they hurt somewhat and b: you can't shower--this would increase chance of infection. Since I have a fancy shower with the option of a handheld spray, Bethy and I came up with this crazy cut-the-bottom-out-of-a-garbage-bag-step-inside-it-wrap-towel-over-that-with-bra-and-drains-on-safety-pin-whole-thing-tightly-don't-cut-off-circulation-to-head-wet-drain-prevention gizmo approach. You wouldn't believe how fast we got it down. Bethy had to help wash my hair because I couldn't lift my arm up. What a process. Since she was only there for a week, I had to manage with one arm as I got better, and also my hairdresser helped with no charge, I love that place. Anyway, the drains, they continued to drain. I thought I could control this process by making the most beautiful graph in Excel that I could, to present the data clearly, visually, and somehow force the drains to comply by making trend lines and "goal" lines at the minimum level required to pull the drains. One drain was pulled as the amount had trickled off..the remaining drain promptly started draining the same total amount as if the other drain were still there. The graph only had the one drain now, but the SAME TOTAL. I would rejoice over the smallest improvement. I would be devastated at the next day's uptick. I made a new graph of the rate of change of the rate--the integral. I thought this might force the drain to stop it. The drain was mute and unrelenting. A week after Bethy left, I just packed up and flew down to SC due to cabin fever in my house. There, I saw a surgeon at MUSC, she advised I get a special tight post-mastectomy bra and YAY-WEAR IT ALL NIGHT TOO! So I did this (they had these available right in the cancer center--great service) so I strapped myself in and awaited improvement. Flying back to Baltimore after a week, I called the plastic surgeon and said I was still draining 100 ml/day (supposed to be less than 30 ml). He said to come on in, but the situation apparently wasn't so urgent since they didn't give me an appointment for another week, during which the problem did not go away. At the office the next Tuesday, the plastic surgeon was sure that this represented a chronic mild infection of some sort, and he wanted to go back in, wash everything out, and replace the expander. I was READY--I said Let's do it! and he promptly scheduled me....for the next Monday. And...he pulled the drain...since surgery was going to happen. So I went home drainless, but found myself grumbling. If this was an infection, why wait till Monday? And why put another expander in if there is an infection....every doctor knows that you have to remove a foreign body to clear an infection. I think he was focusing more on the END RESULT of the reconstructive surgery as opposed to getting me to the rest of my treatment. I wanted to LIVE to have reconstructive surgery. And all of this delay is not necessarily good. By this time, I had already learned that 15/26 lymph nodes removed were positive--this made me a stage 3C, and the oncologist said that he wanted to be aggressive. I put in a call to the surgeon I had seen at MUSC, and she had the same concerns. She arranged for me to see a plastic surgeon that Monday who was affiliated with the Cancer Center there.

So I threw everything I could think of in the car, called the plastic surgeon in Baltimore and said that surgery was off, I just had to go south for my sanity, and drove south. Poor Bethy and John, I invaded their house the day after they returned from their family vacation to Paris and London. No rest for the weary! More excitement to follow... as the fluid continues to build up.....

Injury to Insult

I forgot to mention..a day or two after the biopsy, I answered a knock at the door only to find my onlybutbest sister on my Baltimore stoop, she had flown up to surprise and support me. We hung out, did a little shopping, watching movies, yakkin, etc. I was able to forget stuff for a while. Walking back to the house from coffee on the morning of her departure, I was focusing on the decidedly bushy state of the bushes in front of my house, instead of climbing the stairs; I had a new pair of sandals on....anyway, I tripped on an invisible object and I promptly slammed my forehead into the metal ironwork that is purportedly there for support; grabbed my head and said --"is it bleeding?" Bethy opened the door and said we have to go to the ER! as I gushed blood. The head has such dependable arterial circulation! So, I split my head open and had to be glued back together in the ER just in time for Tuesday's "CANCER PLAN" meeting. I had a big bandaid on my head. The ER PA was worried that I would have a scar....it is amazing how perspective changes the impact of the "small stuff". I just looked at him and said....I am not worried IN THE LEAST. I COULD CARE LESS. JUST STOP THE BLEEDING. Bethy missed her plane, but was able to reschedule without cost to her...she told the story, and offered to fax the ER documents to them; I guess they decided that it would be hard to make that up, and took corporate pity on us. So, a plus for the airlines, in the midst of me usually being annoyed with the recent nickel and diming. So I went to the meeting with Annie, and the best positive attitude I could muster, with a bandaid on my head.

Drama Act Two

Instead of going to the radiologist for the biopsy, I was referred to a breast surgeon... who had cared for both of my regular doctors (internist, gynecologist) who had both had breast cancer, believe it or not. So, he was a doctor's doctor. As he was preparing to do the biopsy, he kept trying to hide the biopsy device from view, which I didn't really sense at the time, and I kept trying to see it. He finally asks "What the heck do you wanna see this thing for??" and I was all, oh, I wasn't really trying, but I guess I was. They fire this nuclear needle device several inches into your flesh followed by immediate injection of painkiller locally. He had to do it twice. I cut off all circulation in the assistant's hand which was offered in kindness. All those people, from the receptionist, to the office manager, to the tech, are such sweet, kind people. The doc basically told me it was cancer from the ultrasounds alone, and that I needed a lot of tests done on the biopsy and on the rest of me.

Then began a whirlwind of MRIs, PET scans, CT scans, blood draws, and another visit to my internist to reassure the surgeon that I and my apparently "needs checking" body would be cleared for surgery. Now I graduated from medical school 23 years ago, and I have done nothing but newborns for the past 20 years. Breast cancer treatment 20 years ago was not only dim in my memory, but completely outdated, with only a bit of an update years ago when my mom was treated. I am COMPLETELY CLUELESS as to what constitutes staging, the need for different modalities of treatment, surgery, etc. I really felt like a real patient! It's hard! This really hit me when the surgeon emailed me the afternoon that I had the PET and CT scan done, and told me that there was no evidence of metastases (spread to other sites) which is a life and death distinction. I read the email, and proverbially, literally, "burst" into tears and sobbed into my hands for half an hour. I guess I was just doing a really good job of denying the possibility to myself up to that point. Exhausting to cry like that. I had to take a nap right away.

My next step was to meet with the surgeon after all tests were reviewed and presented at the weekly management conference with all specialists present. That was a long wait... and my surgeon, being the type of guy he is, said he would stay late the day of the conference to see me at 6:30.. this guy works so hard.... his patients are always in crisis. I appreciated this gesture so much. I am really learning how to be a better doctor. Communication is sooo important and I can always strive to become better at it.

So, Annie the Bellissima came with me and heard the news.....the tumor (yes TUMOR) was estrogen and progresterone receptor positive (GOOD)--opens up the treatment arena to drugs the utilize this receptor, and HERprotein negative (GOOD). Of course I had no idea what all these meant, I have since educated myself. The biopsied node was also positive (BAD). I would need a full mastectomy, axillary node dissection (the kind that leaves you with a puffy affected arm) and chemo, and radiation, and recontruction after that. Estimated time... 8 months (before reconstruction). And....he thought I should stay OUT of NICUs--too many horrible, resistant bugs. He kind of whined....do you HAVTA work?......really do you HAVTA? I got the message.

Yikes. I had a lot of 'splainin' to do to a lot of peeps on my schedule. I don't like backing out of scheduled work. Oy-as they said at Sinai. More to follow.

The Drama Begins

So it all began with a little lump, found by my excellent gynecologist on my routine annual exam. We had been through this before, with lumps, since I have what they call "dense breast tissue", and have had cysts that come and go before; I had been down the road of looking into these lumps with ultrasound, and being told that it was just a benign cyst. I was good at getting my annual mammograms (especially since my mom was treated for breast cancer); the last one in August was normal.

So I thought that this was the same cyst thing. My doc gave me the paperwork at the time of the exam--for an early mammogram and an ultrasound. Put the papers on my desk, and....went about my life with no urgency or concern at all. It was probably about 6 weeks later that I realized that the lump was still there, and it hurt a little now and then. It hadn't gone away like the others. So I made a routine appointment, and went in for the tests just to get it out of the way, and put this thing to rest.

So off I went on May 24th; I had to keep getting "repeat" or different views on the mammogram; they must have squished me 7 or 8 times; then I got to the ultrasound. Now I can't read a breast ultrasound, but I know what cysts kind of look like. The technician was taking pictures of a whole lot of irregular cystic-type lesions, but the shapes didn't look quite right. When she left to have the radiologist look at the pictures, I heard myself saying "I don't have a good feeling about this...."

..and my gut was right again. The radiologist came in and asked to examine me....(yes..a radiologist!) In retrospect, he did this because there were clear abnormalities on the ultrasound, but nothing abnormal could be seen on the mammogram. He went on to tell me this, and that the irregular areas probably represented the spread of cancer to lymph nodes within the breast. He said that it would be extremely surprising to him if it WASN'T cancer, and that I needed a biopsy right away. I scheduled it for 2 days later.

Whyfore

I decided to start this blog:

1- Not because I think that my thoughts and musings will have any interest to anyone other than ME.

2-The doctor thought it was a Good Idea.

3-For all the wonderful, incredible, and inexplicable people who have expressed an undeserved fondness for me, in order that my poor communication skills will not cause undue worrying/concern, and to communicate that your interest in my well-being ( I don't know why!) means the world to me, and has already made a difference in handling the rough spots...Thank you all, and I Mean It.

So here goes. More to follow!