ORGANS - DISMISSED

I know many of you have been waiting for an update on my surgery and the truth is, I have just not been up to it. The good news is, I feel OK, I am just pretty tired, but so many people are asking now, that it's time for an update.

Dad picked me up early in the morning and Julie had slept over that night to help Anelya get to school that morning. I checked in right at 7:15a.m. and was almost immediately taken into a room to start the process. I allowed Dad to come with me. Lyme has kicked in and I am trying to remember how it went down.

First the had me say my full name, date of birth, and what procedure I was going to have (which they did every time they saw me. Like EVERY TIME.) Then they asked me to get naked and put on two johnnies, the first facing forward, the second facing backward with only one arm so as to cover my tush while walking around. I was given the IV and the army of nurses, anesthesiologists and my two surgeons.

Thankfully, my chart confirmed what I had told them, that my surgeries tend to be very difficult because of my Lyme-induced connective tissue disorder, which in the past has strangled my gall bladder and left ovary, and adhered a coconut-sized endometrioma to 2/3 of my pelvis. I am a pain in the ass.

I was very pleased to meet Dr. Schorge, the Head of Gynecology Oncology at Mass General who had come up to assist with the Galileo robot surgery if there were complications. Then came in my wonderful GYN Dr. Bleyenberg, a funny but very capable woman who respected my wishes for a full hysterectomy from the beginning even though it is customary at my age to leave an ovary. She came in in her scrubs, with a hat covered in uterus with arms and feet and happy faces, which was quite comical. We went through the usual hullabaloo and then she left and they came in with the happy meds which were very disappointingly in the form of a needle. I like the happy gas mask. But I was in good spirits.

I was wheeled into the OR, they showed me the robot, which I don't remember, and sooner than I could blink I was out like a light. When I awoke, I think my mom and dad were there. I was in and out and then my dad, who was in clear vision, told me my sister was there too. I turned my head and there she was. "Hey," I said. Mom had brought flowers and we were in a waiting room, it was 2pm. The surgery had taken a few hours longer than anticipated.

It turned out that my uterus had collapsed from the strangling of the connection tissue adhesions which stuck to my lumbar spine, explaining a lot of my pain. It was also explained to me that my intestines had shifted left and were also heavily adhered to my left hip. So, now I know why it hurt so much to stretch to the right and straight down. It also explains why intercourse had become painful. I know it's very private, but I promised to always be honest. I have to be if you will get the whole picture. Basically, everything was where it was not supposed to be. I was relieved to hear that the surgeons felt that this hysterectomy was "absolutely necessary". To have heard anything else would have been upsetting.

So we sat for a while with Mickey, my OR nurse, who I later found out was a Head Medic in Vietnam and had been an ER nurse for decades and kept trying to retire but just couldn't seem to do it. He loves his work and it showed. He sat in front of me and my family to my side. Every nurse that came in got a card with a coupon for a free eBook. It's my mission to educate the medical community on Lyme and so the surgeons and all of my nurses got the book. I hope to hear from them.

It was 2pm and we heard I may not get a room until 5, which was very frustrating.  But Mickey was there talking with us. And we went through my whole life experience with Lyme and he was truly fascinated and full of questions. After a while, he excused himself and I heard him make a call, "This is an extraordinary woman who is an absolute authority on Lyme disease. She has been through so much. We need to get her a private room and some peace and quiet. She is trying so hard to advocate in the medical community," and he went on about all I had been through in my past.

Before I knew it, only 15 minutes had pasts since I was told it would be three hours before I would get a shared room at 5pm, when I found myself in my own room before 3pm. It was amazing and I am very grateful to Mickey for whatever strings he pulled.

Now, one thing i have learned through all of my experiences in hospital settings is you catch more bees with honey than with vinegar. I am always nice to people, but with nurses, I make a point to get to know them as soon as possible and am very patient and as easy-going as can be. I always ask where they are in their shift because a) it helps me know how tired they are = cranky and leave them alone as much as possible and b) how much energy I need to spend becoming their favorite patient.

Now, I have explained in my past book and in this current piece that you always need to know your own body and be your own health advocate. I have found this to be especially true when it come to catheters. Often times, nurses think catheters are working smoothly because they see urine in the bag, but if you feel your bladder is full, you must be very adamant about it until that is remedied. This has happened at every surgery I have had. I felt very much that my bladder was full. The nurse check the catheter and said it was fine and I said, "no, it's not because I really have to pee so if we don't figure this out we will have to take it out so I can go to the bathroom." Sure enough, when she moved the bag around, another 400ml came out and I was relieved. Again, TMI, but you MUST trust your instincts and be pleasantly insistent at all times.

I was in and out of my sleepy state the whole time and was delighted when my sister showed up again with my two nephews and brought me some dinner and a boatload of snacks, including an obscene amount of chocolate. Hormone changes + chocolate = great combination. They stayed as long as they could until the boys had to runoff to play hockey. It was really nice of my sister to come twice in one day. I have to say that I did really well at the hospital and my pain was at an absolute minimum. I think that I had been in so much pain for so long, that this was actually a relief for me, when most women would find it excruciating.

The following day, my parents left for a much-deserved vacation (away from taking care of Mini and me) in Charleston, SC with my mom's childhood best friend and her husband. So, it was time for Andrea's army to go into action. I was picked up late morning by my sweet friend Carissa who brought me home. I was loopy, but interestingly, my pain never exceeded a 3 on a scale of 10 so I only took one Percoset that day and since then an occasional ibuprofen, but that is IT. I am kind of shocked by that. We drove back home with a pillow between the seat belt and me.

I made it home and my cleaning lady and friend, Jill, had arrived to take care of me for the next 24 hours. Mini had a sleepover play date and was VERY excited. This was perfect because I had complete peace and slept for 36 hours almost non-stop except to eat a little and go to the bathroom. At one point, I weighed myself because I looked 6 months pregnant and my belly was REALLY hard and I had gained 16 pounds. WHAT??????  Well, obviously it was all water weight, but that was shocking to see. They blow gas into you so they look around and get into places they need to get into, hence the bloat.

I'm still a little bloated 6 days after surgery but pain-free and still very much compliant with my doctor's orders. I was told I would go into menopause on Saturday, the day after the surgery, which has not happened. I have not noticed any change in body temperature. Tomorrow I will begin my bio-identical hormones and we will start the process of finding the right balance for me. It may take a while and my Blue Sky has been warned and is ready for the mood swings, but I am certain we will be successful in working it all out quickly.

On Monday I am going to start treating my Lyme again with a "bridge week", a light week of antibiotics to ward of any regrowth of the spirochetes and then I go back into full blown Babesia/Lyme protocol the following Monday. I have a hysterectomy follow up on March 17, which is good, because I am unclear as to what I am supposed to now - what activities I can do - not that I have the energy to do anything, but still. I hope to start driving Mini to school or something soon. We'll see.

Once Jill left, a parade of people came in to start the care ward - Julie (the week's master of Ceremonies), Pierre, who stayed from Mon-Thurs just to watch me, and Katie who was nice enough to drive Mini to dance class and bring her home on two occasions. Next shift is Julie spending one more night before my friend Beth comes up from Rhode Island. Mini has play dates for both days this weekend so Beth and I can chill and my parents can continue to settle back in before their refuge comes to an end and real life sets back in.

I have to say, I truly hope and believe this hysterectomy will be the key to that gateway to remission that has forever been locked. May this be the key.