We arrived at this very large cancer center building near the Kansas University Medical Center this morning. This building was not on the actual KUMC campus, but just near it. It took us about 35 minutes in rush hour to get from Mark’s door to the waiting room. As we stepped off the elevator, we didn’t know where we were going. This very long and large hallway had one lady in uniform in it. She immediately asked if she could help. When she found out where we were going she said she was going to the same place and would take us there. I, who was a tiny bit terrified at that moment, was SO appreciative. You know, friendly, helpful people when you are in that emotional state are just a God-send. We never know what a friendly smile and helping hand will do for someone in need. (Reminder to myself)
I walked into this large waiting room where everyone registers or checks-in, and I saw several ladies with hats on and no hair sticking out. I immediately got a sickening feeling and thought, “No! I don’t belong here!!! What am I doing in a CANCER center????” I wanted to run away. But I waited until I was called to the desk and had to sign many many papers. She said each time I came, I would not ever have to sign this many papers – just a first-time thing. Then I sat down to fill out the medical form that everyone has to fill out EVERY time they go to a doctor. Aren’t you ever just tempted to write in big letters on those things “DITTO from last time”?!?! I didn’t even get it all filled out before a nurse came to get me. I guess it took me longer because I was just having a hard time concentrating. I couldn’t even do the math for a minute to figure out how old I was when my first child was born!
I was taken back to an exam room (lots of rooms in this place), and my vital signs were taken. Whew! That blood pressure was up there today. Then before long a young man came in and said he was (I think) a physician’s assistant (PA). He took a look at the affected area – I don’t know what to call this thing any more. Growth? Lump? Cancer? Tumor? Angiosarcoma? (no, I don’t like that word). I think for now I will continue to call it a lump, even though it has gone beyond that – just sounds nicer. :) I told him my whole story, knowing I would have to repeat it all over again when the doctor came in. I know how it goes in university medical centers. I’ve been in them enough times with Dad. You would like to record your story, and then just press the button when the next guy walks in! Anyway, the PA was quite nice. Shortly after he left, Dr. Mammen came in with the PA and a young lady.
Dr. Mammen immediately made me feel very comfortable with him and confident in him – really nice, good listener and explained things very well to me, was calming for me. I told him my whole story and he took a look at “it”. He very carefully explained to me about sarcomas and angiosarcomas, in particluar. Then he laid out the plan. Bottom line is that surgery would be done to remove it. It is about the size of a quarter now, so he will take a large margin around it, removing about a 3” diameter area starting right up against the back of my ear. The other edge will be about half-way between by ear and the back of my head. Unfortunately, being on the scalp, there is no way to bring the skin together from that large of an area, so they will take a skin graft from my thigh. He feels the growth is well delineated; there is no tenderness around it (just on it). He felt all the lymph nodes in my neck and none are enlarged. The plan is prior to the surgery to have a CAT scan of my chest (IF it travels it is usually to the chest), so this is just precautionary. The surgery is scheduled for Tuesday, Oct. 25, and the CAT scan for Thursday, Oct. 20. My preanesthesia testing will also occur on the 20th.
He also examined a small lump that I discovered about 2 weeks ago that is about 2 inches higher on my scalp on the same side. He does not feel like this is anything or related to the other one, but he will remove it as well just to be on the safe side (yes, please do!!) – just a small incision. Right before the surgery, a dye will be injected to help him do a sentinel node biopsy. A sentinel node is the first node to which a cancer spreads IF it has spread. That will be sent off and the results will take a week (sigh). After the surgery, I’ll stay the night and go home the next day, to return for my postop check 2 weeks later on Nov. 8th. (Guess we’ll have to cast absentee ballots, because I don’t want to miss being able to vote!) He said the dressing from the graft site on my leg will be really messy. I’ve heard that graft sites are more painful than the main operative site. He said he would have to shave a good bit of hair. He chuckled and said I may need to have a hair dresser help me with a hair do. But my hair is long enough that I think it will cover most of the bald spot (will be just a little thin on that side), since the skin on my leg does not grow long hair! :) The dermatologist in Hutchinson said that I would most likely be receiving radiation after the surgery, but when I asked Dr. Mammen about that, he said if the perimeter looks good, there would be no need for radiation. So if that goes well, and IF the lymph nodes are clear, I would be good to go! I’m not really worried about the surgery – I just want the thing GONE – but my greatest concern is if it has spread to the nodes. He said out of his last 7 surgeries like this (or his last 6 or 7 years, I don’t remember which), he only had one positive lymph node. That was encouraging to me.
When it was over, Guy said he was encouraged from what the doctor said. I think I am – it’s still hard to just get over the “C” word for me. I certainly could have heard a lot worse from the doctor. And by the way, Guy has been my steady one. I’m sure it is causing him some anxiety, but he’s being very positive and keeps saying positive words to me for which I am SO thankful!!
So now we just wait for the PAT and scan day, and then the surgery. We came prepared to stay at Mark’s because we didn’t know what to expect, so we will probably just stay here. Mark gets home from his out-of-town trip for Monday and Tuesday, and we want to spend some time with him. By that time, it will only be two days until the test day, and then the following Tuesday is the surgery. I told Guy we should just make this a little vacation for us – see some sites and have a good time together here – find things to keep my mind occupied!
I’m still just trusting God and praising Him for placing us in this particular place at this particular time. I’m still amazed at how God puts all the pieces of the puzzle together. I hoping and praying for the best outcome. I know God heals in many ways. Sometimes He chooses to do it miraculously, many times He uses doctors, and sometimes He gives us the ultimate healing. They say you are given “dying grace” when you are about to die. I don’t have that right now, so I don’t think I’m about to check out yet! Whatever the outcome, I will accept. I’m ready spiritually, but honestly? I really don’t want to die yet – if I have a choice! :)
The outpouring of prayers from family and friends from one end of the nation to the other, across many states, has just blessed me beyond words! I can’t even begin to express my thanks. There have just been a few moments, here and there, when I suddenly felt a little panic or down-feeling, but I know many of you are praying for my peace of mind as well as my body, and those prayers are certainly helping me day and night. What would I ever do without y’all???? Please keep them coming. Please pray these lymph nodes will be cancer free!!!!! (Yikes, there’s that word again!) :( Pray this thing will not get infected in the meantime since it continues to ooze blood from the biopsied area. I clean it with soap and water twice a day and apply Polysporin. The stitches were to come out next Monday. Dr. Mammen opted to just leave them in since taking them out is likely to cause more bleeding. I was thankful for that because I wasn’t looking forward today to having him dig around to remove them. One blessing today!! Pray I will get adequate rest between now and then. I can only sleep on one side. Sleeping on my back causes it to be painful and bleed more, and obviously sleeping on that side is not possible.
Thanks again for ALL your prayers!!!!
P.S. For all my nurse friends, PM me if you want to see a picture. :)