I clearly need to be posting more – a lot has been going on.
First, I have been through getting set up for radiation. Twice now actually. First was last week – Fletch went with me and was my personal photographer. He did a very good job and I literally had over 100 pictures on my phone afterwards. We came away with play-by-play of the radiologists mixed in with close ups of his pet dog, random equipment in the room and lots of fun highlights. When I went in, they laid me down on a slightly angled table and fitted me into the “cast”. This is basically a large, flat plastic pillow with tiny styrofoam balls inside. The plan is to radiate my left chest along with the lymph node area under that arm and up by my collarbone. So, they positioned me with my left chest slightly forward and my arm over my head. Once they had me lined up properly, they sucked the air out of the pillow which left it rigid and cast into the shape of my body. They marked three spots near the bottom of my ribcage to show where to line up the grid from overhead (just like when you have an x-ray and they turn on the lights against your body to line everything up. They called in the doctor who approved everything and marked me with tons of magnets and then we went to CAT scan, lined me up again and then took images of me in that position. This was pretty much it and I thought we were done. The next step is to do a “dry run” and tattoo me with the markings so they were going to call me as soon as they were ready for that. But nothing can be that easy, right? Friday morning I got a phone call from the doctor herself. She said that they have been working with my images, but it is impossible to get the right angle. Remember how I said that the tissue expanders don’t move when I lay down or anything? Well, that high and mighty right boob was keeping them from getting any angle on the left one. We don’t want to radiate more tissue than necessary so the only fix is to take the right side down. I went to the plastic surgeon who removed a bunch of saline and brought that side down about two inches. Yup – inches. Then I went back on Monday and we did the whole thing again with several specialists coming in to check on me and see what had been done to improve the situation. They were happy with the change from what I could tell and I’m waiting for them to call me to give me the final go-ahead or tell me I need to have more taken out. So, needless to say I am completely lop sided now. I am utilizing the camisole given to me after surgery which is made to stuff – and I am stuffing that sucker like an 8th grader. I think the camisole is good though, it looks pretty much identical to the other side except one side is rock hard and the other feels like a stuffed animal. It’s an acquired taste I know. As soon as radiation is over, he will fill up the right side again. He said it would take 2-3 fills and likely won’t hurt as much as the first time. It won’t make any difference long term either, so it’s really not a big deal. I’m just looking at the humor in it for now. Here are a few shots from the experience.
Here is me on the table with the important bits covered getting lined up:
Here is the cast:
Here is Fletcher doing what I did (please let this be the only time he is on one of these!):
Also this week… I got my port out!!! I’m so happy to have this thing out of my chest and to not be getting poked by that stitch constantly! Surgery went really well and I was awake for the whole thing. I wasn’t nervous going in which was odd too. I’ve clearly had a lot done to me in the past year that I had zero anxiety going in. We went to the surgery center in the afternoon as I was fit into her schedule at the end of the day. I got an IV in my arm and just waited. When the doctor finished her previous surgery she came to visit with the nurses and was super happy. She told me this is her favorite surgery since it’s always a good thing for the patient and is a really easy procedure. Here we are before surgery – I LOVE my surgeon.
And here we are with my nurses:
I was awake for the procedure and we talked the whole time. They were giving me a little something for anxiety but the nurse told me afterwards that she barely gave me anything because I was so calm and talkative. I take that as a good sign and I never felt drugged at all. My surgeon is always really easy to talk to and the nurses in there were great. We talked about my upcoming trip and just pretty much gabbed for 30 minutes while she was taking out the port. It was really easy and I didn’t feel much of anything. It’s done with a local anesthesia and I felt the pressure of them holding the vein after removing the catheter. Otherwise, she had to cauterize a lot because of my bleeding so I could smell the burning but that was it. Easy peasy.
In recovery, everything went well up until I was about to leave. They removed my IV and we held pressure on it for a few minutes. When I got up, my shirt sleeve was all wet. I knew that wasn’t a good sign. I pulled my arm out and sure enough, there was blood all over the place. Here is the nurse scrambling to get me under control and cleaned up:
A close up of my arm:
And the bruising today which is much better than I expected:
I also got to keep the port which is cool. As a bonus my doctor gave me that stitch as well. Here they are:
You can see the marks in the circle from all the times the needles went in as they accessed the port. The stitches went through the corners where the little gray dots are and the metal part attached to the catheter which went directly into a deep vein.
The stitch. This sucker has been poking me for nine months now. I was amazed at how many knots are tied in it! I think it was the end that sticks straight up that was poking me as there was some flesh stuck to it even after the cleansing. Just a guess.
Here is the incision and lovely steri-strips that I know will be itching soon:
Such a small scar for so much history.
I’m leaving Thursday for the Stupid Cancer summit in Las Vegas. I’m super excited. They’ve got everything laid out for us except for about 2 hours so I will be busy! Stupid Cancer is a group that supports and advocates for young adult cancer patients and survivors. It is for all types of cancer and focuses on people who were diagnosed between 18 and 40. I have had a really hard time finding people my age so I am looking forward to meeting some. Also, the sessions sound amazing and I’m sure I will come home inspired and well educated – and hopefully with lots of new friends.
Also today I had the opportunity to speak with another cancer patient today which was great. She was recently diagnosed and has to have a mastectomy. This of course is terrible. But I was very happy to be able to talk to her and give her some tips about surgery and just let her know she is not alone. I feel like that means a lot. I know that the survivors I have been fortunate enough to have as friends or even just talk to once have all meant a lot to me. I’m happy to be able to pass that along and help others. It helps me a lot to feel like all of this has some sort of meaning. It has definitely changed my life and changed me as a person. One of the first things that a friend who is also a survivor told me was that this year was going to suck like nothing ever has before, but I would come out of it a better person. She was right. The things that are important to me came to the surface immediately and everything else just fell away. Little things are just exactly that.