March 23rd, 2017
Two days after my diagnosis…my biopsy site turns red. I don’t mean a little red. I mean half my breast looks like a tomato. To the emergency room I go, since it is after business hours. The residents (doctors in training) see me and admit me to the hospital for intravenous antibiotics for cellulitis of the breast. Given that I am a health care worker…it is assumed that I have Methicillin resistant staph aureus (MRSA) and I am started on Vancomycin ( a big gun antibiotic). The infection clears over the next 36 hours, and I am released home on antibiotics I can take by mouth. The problem is now everyone is scared.
What if I am more prone to infection than the general population? What if I am always going to get an infection after a procedure? What if I get an infection after my surgery which would delay my chemotherapy? Big problem in my mind and in the minds of my health care team. Just a little problem really…cellulitis…and yet a world of hurt if it reoccurred at the wrong time. So, I decide to do neoadjuvant chemotherapy, which is not the normal chain of events. Normally, it is surgery then chemotherapy then radiation if needed. But I was afraid…I have cancer in at least two lymph nodes under my arm…and satellite lesions in the breast next to the primary tumor…what if it is elsewhere? Did I want that going unchecked while I recovered from surgery for who knows how long if I had infectious complications? I felt like I couldn’t risk it. Be advised…this was a choice made between me and my oncologic team…it is not right for everyone. I elected to start chemotherapy first.
But before I could get chemotherapy, I needed a port-a-cath and had to go through educational counseling about chemotherapy, which was informative but glossed over much of the negatives of chemotherapy (which we will hit on in a later entry). So, on April 3rd, I underwent surgery to have my “port” placed. A port can be placed in a couple different ways: either by Interventional radiology who generally does it under conscious sedation (meaning you are awake but hopefully unaware) and local anesthesia or just local anesthestic (like lidocaine) where you don’t feel what they are doing…or your surgeon who can do it like above or elect to put you completely asleep. I wanted to be completely asleep because I am terrified of needles, I didn’t want any chance of remembering, and I am a surgeon who prefers my own patients be asleep (it is a bias). The port placement was perfect, and I don’t remember a thing.
April 7th, 2017
First chemotherapy with A/C , also known as cytotoxan and “The Red Devil” (Adriamycin). It wasn’t scary…except for getting the port accessed and only because I am afraid of needles, which I may have mentioned and will most likely mention again. The Red Devil looks like red Kool-Aid which the nurse slowly pushes into the plastic tubing connected to your port by hand over a 15 minute period. It doesn’t hurt. I could only tell I was getting it because the nurse was standing there talking to me. Then, the cytotoxan was infused with a pump. The first time, I didn’t notice anything but later on, I would get a metallic taste in my mouth during the infusion. We will talk about chemo side effects later on, but one thing to note now…The Red Devil turns your secretions red…that means urine and tears, which my nurse told me about but was still a shock the first time I experienced it myself.
I carried on this way for two cycles of chemotherapy, until week 5, the first week of May. My neck incision got infected, or I had a local reaction to the suture used to close it…it was painful, red and swollen…we will never know exactly what caused the problem, but I had to have my port removed. This is a devastating event. I went to see my friend and breast cancer nurse coordinator and my surgeon. My surgeon agreed we should look at it closer and see if there was any pus that needed to be drained. Problem was…the catheter was lying in the middle of the pus and had to be taken out to prevent any infection spreading into my bloodstream…and I was wide awake! I don’t want to freak anyone out, but I was freaked out getting it removed. I remember the moment my surgeon decided…he was silent and I said, “That bad, huh?” and he took a deep breath and said it had to come out. I cried. I knew that meant I would have to rely on temporary access now, which could be hit or miss.
May 8th, 2017 (Monday)
Chemotherapy was cancelled last Friday due to my active neck site infection and my meeting for today was moved to Wednesday because today I get my semi-temporary venous access called a PICC line (peripherally inserted central catheter). Yeah!….NOT!!! Let me tell you about PICC lines…they suck. Yes, they are a lifesaver and do not really hurt being placed…but they still suck! This two or three limb plastic piece hangs out of your arm, and you have to keep it from getting caught on everything/you can’t get it wet/it freaks you out until you get used to it, which I never did because….another complication!
I had my PICC line for less than a week, which is not the norm. Some people receive their entire chemotherapy regimen through a PICC line with no problem…we are talking months of therapy. But not me…nope…I developed pain in my shoulder and neck. A deep muscular pain which kept getting worse throughout the day until I could no longer tolerate it and went to the Emergency room yet again. Turns out…I had a blood clot (Deep vein thrombosis) caused by the PICC line. It was bad enough to cause the pain and threaten my life…I had to have the PICC line removed right away and start a blood thinning daily injection (Lovenox) to keep the blood clot from getting worse, which I would have to continue for at least 6 months. Great thing for someone afraid of needles!!! Every night I panic for about 20 minutes before I get my shot…which my mother or husband are nice enough to do since I can’t do it to myself.
So far…those are my complications. Doesn’t seem like a lot when I write it down, but going through it is a different story. Every Emergency room run, hospital admission, surgical procedure seems to amplify the complication and the stress on myself and my family. Don’t get me wrong…complications were not what I was dealing with on a day to day basis…but they were landmarks or defining moments I felt like I could not escape.