I guess mostly I am numb. I didn’t get to sleep last night until after 3:30. It was one of those nights where everything itched. Crazy! I got up twice to look for something to put on this little bump on my neck. I think it was one of those oak mite bites. It was in an area that was just barely numb, and not enough feeling to satisfy it when you scratched. As I was looking in the mirror to try to see it on the back of my neck, there staring me in the face was a tiny discolored bump – just to the left of my flap – just above the top of my ear. Why am I just now seeing that???? I haven’t been looking for bumps around that area – where the 1st surgery occurred. I kept watching for something to crop up near the newest surgery. I tried to tell myself it was just part of the healing stitches area; it just couldn’t be another bump. So went back to bed. I couldn’t get to sleep so I got back up, went down stairs and got my ear buds out of my purse, dialed in Pandora, and found some soft Percy Faith strings music. That helped calm me and helped me fall asleep.
This morning I asked Guy to look at this bump, and I took a picture of it.
Honestly, it looked just like the 3rd one did. I didn’t know what or how to think about it. All I knew was that I had an appointment with Dr. Mammen, and I would show it to him.
I was sitting in the dining room after breakfast, letting a little sun shine on my back, staring off into space.
Guy: What are you pondering so hard?
Me: Oh….just thinking,
Guy: Stinkin thinkin?
I saw my surgeon this afternoon, thinking he would tell me when the next surgery is. As I was in the room waiting, I thought I felt another bump on the right side of the flap. It is hard to view that area because it’s where the hair is growing back in.
One of his associates came in first. I told him that I thought I found two more. He looked carefully, but didn’t make any commitment. He just said, “I’ll tell my boss, and he’ll be in here shortly.” He made some comment that they were working on the surgery schedule. That made me suspect that something might be up, because the PA had told me that the date of the surgery would be set for sure when I came for this appointment. When Dr. Mammen came in, he went straight to my head. I showed him the two that were suspicious, and he immediately said, “I don’t the looks of those, nope, don’t like them at all.” He said that he had visited with Dr. Powers this morning, and they came to the conclusion that more surgery at this time would not be the best plan, but that I should start chemo right away, and attack the source of this issue. He could remove these spots, but unless we addressed the source of the problem, they would just continue to pop up. He said, “Let’s do chemo for 6 months, and if no more spots appear, we will figure that the chemo got those cancer cells we could not see. Then we’ll address the areas that we *do* see and remove them at that time.” I had a feeling that it might be a plan like that. He said he would not remove the stitches at this time, but come back in two weeks to have that done. He wants to see me once a month during the chemo months. I will monitor those spots in the meantime. (Have got good baseline pictures of them.) I asked him about that last path report and did it tell him where the non-clean margins were – on the edges of the incision or underneath what he removed. He said it was just on the edges of the incision. For some reason, that made me feel a bit better – to think that the cancer was not underneath and trying to eat into my skull. I don’t know that that made a dime’s worth of difference, but I guess I was looking for *something* to feel good about. I asked if the chemo would affect the spots already there. He said probably not, but he hoped to stabilize the whole situation. I told him I just did not want another flap – I didn’t want my right arm to feel like my left arm does now. And I told him (with a quivering voice) I just could not ride this roller coaster anymore! So I decided that the plan sounded like a good one. I think I’m at least glad I’m not going to have to have surgery again right away. I was not looking forward to taking a huge patch out of the top of my head; then carrying around a pump connected to a drainage tube coming out the top of my head for a week until Dr. Przylecki could do the closure. And have another donor site to contend with. It may still happen at a later date, but I’ll get up for it then if I have to. Right now, I have to concentrate on getting through the chemo.
Dr. Powers will call me either tomorrow or Monday to get the chemo started. I don’t know if they will start it here or set me up at Hutchinson. I want to go home, but I still have to see Przylecki on the 14th about my arm and leg. My arm is almost healed, but my leg has some to go. Then I have to see Mammen on the 22nd. We’ll probably just stay here through Christmas then. I don’t know. It will all depend on where and when the chemo is administered. They may start it here, get me through all these appointments, and then transfer me to Hutch.
I’m just going to go with the flow…..have no other choice. God and dear friends and family continue to fill my “strength jar”, and I’m forever grateful for that. I’m trying to stay on a little more even keel – not let the highs be so high and the lows not be so low. I’ve come to realize that there is no “normal” anymore, so I’ve quit trying to pretend there will be (I think I have – working on it anyway). I don’t want to be pessimistic or give up hope, but just trying to be more realistic, because the fact of the matter is, this thing, for the time being, is getting ahead of us. We are NOT getting ahead of it – in fact we are not even EVEN with it. The most I can hope for right now is that we slow it down enough to overtake it in the long run. I’m trying to be more realistic because I’m sick of getting my hopes being dashed again and again! The up-down, up-down teeter totter riding is wearing me out!
So now I wait again for yet another call. Things in a large medical community move like m o l a s s e s in January.
As always, I’m in His hands…..