We are in Overland Park at Mark’s house. Got here shortly after lunch. We came prepared to stay through Thursday and possibly Friday. Here was the schedule for the week:
Tomorrow – Tuesday
8:30 am be at Dr. Przyleck’s office (clear downtown) to have the metal dressing removed – can’t have metal anywhere near my head for the MRI. Have another temporary dressing put on.
9:30 – drive to Dr. Mammen’s office (original CA surgeon) to see his PA.
10:15 – get MRI of head and CT scan of chest, abdomen, and pelvis (same building, thankfully)
1:15 – Drive to Dr. Power’s office (oncologist) to find out results of MRI and scan, and find out the next plan.
Wednesday – day of rest!
Thursday – have surgery (1st case) to permanently close current wound – most likely with a graft from my leg. Go home that day or stay at Mark’s for the night and go home to LR Friday.
Somewhere in here I was to find out the results of the pathology report – since we had not heard yet.
WELL……on the way here this morning, Dr. Przylecki’s nurse called me. I was glad to hear her voice, because if the news is bad, it is always the doctor that calls me. However, it was not particularly good. Dr. Prezylecki wanted me to come back to his office, so he could reapply this metal dressing after the testing. ARGH!! I vowed as soon as I saw him, I would ask him what the purpose of the dressing was, because I never wanted another one like it again! It has been the most painful of all the postop times. It is hard, and it does not give! And it drains – have to carry a Kleenex with me all the time to keep it from running down my neck! I asked her what the purpose of it is. She said it was to put pressure on it, and it contains medication to prevent infection and bleeding, and aid in healing. I said, “Well, I do not like it!!!” I was about to ask about the path report, and she said, “We have not received the path report yet, and Dr. Przylecki is afraid because it is taking so long, it may not be back by Thursday, so he wants to postpone the surgery until Monday.” ARGH!!!!!! She said he is aware of our long drive to here. So now do we go home Tuesday and drive back Sunday afternoon??? We didn’t come prepared to stay that long – my meds will run out before that time. WHAT A MESS!!!
Here’s what I think – I’ll bet that path report IS back, and it is not good, and he needs more time for taking more tissue and a long reconstructive surgery, and he didn’t schedule enough time for Tuesday because he has another surgery after me. I don’t know why I think that, but I just have not had a good feeling all along for this last report. I think Dr. Mammen needs to go back to doing the surgery, and Przylecki just reconstructing. If this wound gets much bigger, it will require a flap rather than a graft. This last go-round Dr. Przylecki mentioned a “back flap” just in passing – didn’t expand, and I didn’t ask, but I do remember the words being used. That’s just about the last thing I would want again – another flap – another 7 days in ICU. I know I’m running down rabbit trails I have no business going down, but I’m getting pretty exasperated! Just sew this wound up if the news is bad and send me back to chemo.
Here is my fear with chemo. I was taking chemo (AND radiation) when this last weird booger popped up and was not affected by the treatment I was taking. That had to be cut out – and it started this last round of seemingly endless surgeries. I keep hearing my Hutch oncologist’s words ringing in my ears – the fact that these things often mutate – they get tired of being attacked by the current chemo agent, and some break off and go mutate. This last tumor was not like the other ones that the chemo attacked and vaporized. It itched the whole time, and it looked different – with the HAIR GROWING OUT OF IT! This last patch that he took had itchy bumps all over it, none of which had changed color, but nevertheless, the positive biopsy was in that area. So. if it has indeed mutated, I’m not sure that same chemo would work. I liked that chemo (if there is such a thing as “liking” chemo), because the side effects were so minimal. The other chemo they considered had serious side effects.
Again, I’m running down another rabbit trail, but the analytical nurse in me has a tendency to do that – I know too much!
I know God is in control, and He is will be all the way, but sometimes, your faith just wanes a bit in the face of reality.
I really must go to bed since I have a very big day ahead of me tomorrow. Please pray I can get a decent night’s sleep with all the itching all night long (withdrawal side effects of tapering off of Cymbalta ARGH!!!!!) Haven’t slept well for many nights. I just feel like things are so up in the air right now, and it’s all a big mess! I need my peace and calmness back – having a hard time getting it.
But…..as always……I’m still in His hands……..