Wednesday, July 26, 2017

Update from Oncologist's office....

Below is what I started a week ago, so I’m going to go ahead with it, because that was the way I was feeling at that time, but below that paragraph is the result of my check-back with my oncologist in Kansas City.

 07/14/17  How did I suddenly get this old???

It seems just like yesterday that I just turned 71, and no one could believe I was that age.  I drove wherever I wanted to, whenever I wanted to.  I got out of the car easily and walked right into the store and shopped easily for as long as I wanted. Then, suddenly, everything changed in a moment’s notice. And it seems I’ve added 10-15 years……..which would make me 80-85.  Now it’s an effort to get in and out of cars – it’s an effort just to get •ready• to get in and out of the car.  I was riding with my daughter the other day, and I was having trouble getting a package pf cards open, and she had to open them for me.  Suddenly I realized – I’ve become my mom, and Jeannine has become me – I’ve crossed that threshold. I don’t want to be on that side of the threshold – I’m not ready yet to be old.  I need time to prepare for that yet.  It happened too quickly – too suddenly.  I have many, many things left to do that take more energy than I can muster up each day.  That really frustrates me!!!!  I have big plans each day, but as soon as I sit down, my eyes won’t stay open, and my head starts to nod.  ARGH!  I HATE THIS FATIGUE!!!!  In fact I’m going to have to stop and take a nap right now!

07/26/17 Mostly good news, but possibly some bad news…….

I’ve been meaning to catch up this blog for weeks – I think I’m about 2 months behind now, but I’ll catch that up later.  For now, I’ll give you the results of my check-back with Dr. Powers, my KC oncologist.  My last visit with him was on a Tuesday, after a Friday chemo and 20th (last) radiation treatment.  He told me at that time, to stop all chemo – “You’ve been through a lot and just need to go home for a month and recover.”  That was such great news!!  And I did just that.  He told me to continue with PT for strength and balance, but, frankly, I just couldn’t get motivated to do that. 

I feel like I’ve come a long way, especially just this last week.  My neuropathy is a little better – I’m not thinking about my feet all the time I’m walking.  Jeannine and the girls have been with us since the middle of June (NICE), so we go out almost every night to walk all the dogs (her 3 rescue dogs, Mark’s two golden retrievers, and our rat terrier, Annie).  I can go farther now without having to stop and rest. My interest is coming back to get my quilt room in order.  I’ve emptied 5-6 boxes last week.  I still don’t have a lot of stamina, but it is better than it was.  I still fall asleep easily, mainly because of the side effects of medication I’m on. My taste is back to normal, but I don’t really have an appetite now – which is really a good thing, after being ravenous on those steroids.  I’ve lost about 7 pounds, and my face is starting to look more like ME, instead of being so round.  My head has lost the red color and all the areas have healed except the place where the “hairy booger” was located.  Pictures will follow in a bit.

So yesterday, Dr. Powers walked in and could not stop grinning at me. “You look SO MUCH BETTER!!”  He said I was in pretty sad shape when I was in a month ago.  He said my color was back, and I just looked like I felt so much better.  That made me feel so good right off the bat!  He wanted to know how I was feeling, and I basically told him just what I wrote in the above paragraph.  I showed him the “hairy booger” that had come off Sunday, July 9th, and then showed him the slide show of pictures that I had taken right after that and the days since.  

For the squeamish ones, I'll put the pictures at the bottom of the page.

He was really impressed by the progression of healing.  HOWEVER, he was not very comfortable that the lesion was still there.  He said it remained somewhat hard, and even though it had lightened in color from purple to nearly the color of my skin, it is still THERE.  He checked the rest of my head all over and was amazed at the healing everywhere, including the top of my head.  That area was in question the last time for possible grafting, but even it had healed.  But that thing remained in place.  His two options, since I was to see Dr. Przylecki, the plastic surgeon today, was to ask him to biopsy it or just take it off completely, getting good margins – which means surgery.  If you biopsy it, and it shows some cancer, you still have to deal with it, so his recommendation was to see Dr. Przylecki and get his opinion on removing it.  If we wait to see if it will go away, and there is some cancer growing there, that would not be a good plan.  If we remove it, and it is just scar tissue, then at least we know it.  By removing it, we take no chances, and we find out for sure what it is.  It could be something entirely different than what we’ve been dealing with – since it has been such a STRANGE thing from the beginning.  He said there is a cancer (and I can’t remember then name) that typically has hair growing out of it, but those occurred in the abdomen, ovaries, and testicles, so he didn’t not believe it was once of those.  But this thing has pretty much had everyone stumped.  At least by removing it, we’ll know.  And I’d sure like to know since it has not acted like any of the others.  It could be that it is a mutation of the others, since the chemo I was on didn’t seem to affect it a lot.  I think the radiation affected it more than the chemo did.  At any rate, I’d like to get rid of it.  The original surgeon, Dr. Mammon, who did the actual removal of the cancers is out of town this week on vacation.  I sure wish he were here to look at it.  I didn’t want to have to come back to see him next week.  When I set the appointments up a month ago, I didn’t feel the need to see Mammon at that time.  Dr. Pryzlecki many choose to involve Mammon in the surgery.  I said if he make the incision vertically, by the time he removes good margins, and pulls the skin together, I’m might get a bit of a face lift!  šŸ˜€

One of the other things I talked to Dr. Powers about was the need to get my cataracts removed, and my droopy eyelids fixed.  I wanted to know how long after chemo stops can you have surgery.  He said I could go ahead and do it now.  He laughed when I talked about the droopy eyelids, because he thought Dr. Pryzledki was going to do it.  He said, “He’ll want to look you over from head to toe, if you open that door!”  I said, “Oh, NO!  I don’t want anything else done – just my eyes!!  Because of the difficulty driving.  He got a good laugh out of it.  I told him I had an eye doctor back home that specializes in cataracts and droopy eyelids, and I had an appointment with him the last of September.  One of the things I’ve noticed the last week or so is that my eyesight is getting better.  I have these two really big smudgy scratches on both lens of my glasses, right in my line of vision.  Until this last week, I haven’t even noticed them, but now, they are really starting to bother me.  Before all this cancer stuff, I couldn’t stand to have one speck on my glasses.  Since those scratches are starting to bother me, that’s how I know my vision is coming back.  This messed up vision has been one of the most frustrating parts of the cancer – not being able to see well.

So, the bottom line of my visit with Dr. Powers is that he saw no reason to do anything different for the next 2 months, as far as chemo goes.  Unless something comes up in the meantime, I will return to him the 3rd week of September for a CT scan of chest, abdomen, and pelvis, and an MRI of my head.  What Dr. Pryzlecki/Mammon decided to do will be up to them.  No chemo for 3 months, and I think I could almost feel normal again!!!  Or at least I’m ready to try!!! 

I’m not really afraid of this surgery.  My only concern is that it is right up next to the flap.  That’s why I thought Dr. Pryzlecki should be involved in the surgery since that flap is his baby to start with, and you have to take a good margin around this thing. Well, it will be what it will be…..I’ll leave that all up to them.

I’ll update you on the visit with Dr. Pryzlecki tomorrow.  The visit was supposed to be at 9:15, but I got a call today saying he had to be in surgery in the morning, and they had to move me to 2:00 in the afternoon.  We will leave right after that visit to head home, so may not get the updated blog published tomorrow – but will try.

Thanks to all of you for your thoughts and prayers!!!

As always…….I remain in His hands…….

July 2  Head still really red and RAW from the radiation burns.

July 7th.  The hairy thing still holding on.  Head doing better, but flap starting to peel.

July 9th, it came off.  Outside of the hard black thing with much hair.

Here's a better picture of how hairy it was!

 The inside of it - hollow!

July 9th.  This was taken immediately after the black cap came off.  It shows that the tissue was kind of "drawn up" into the black cap.  And if you look closely you can see two hairs coming from it. This is 3 weeks after radiation ended, and my head was fully engulfed in the radiation burns.

July 10th, one day after the black cap came off.  

July 11 Flap and neck with radiation burns. Ear is burned as well.  Have not been able to wear glasses because of the burns since radiation ended.

July 14 The spot has receded a good bit, but not in circumference.  The flap is healing and peeling.

July 14, flap still healing at the bottom.

July 18.  The burns are pretty well healed - just a couple little spots at the bottom of the flap. The lesion continues about the same, maybe shrinking a bit.  One thing different about this one is that it has ITCHED almost continually.  

Sunday the 23rd.  Still remains kind of purple.

Tuesday, the 25th - the day I saw Dr. Powers.  It is losing it's color, and the top half is looking like the rest of my scalp.

July 25th - the top of my head has filled in and healed.  No more white-looking "knobs." (light shining on my bald head. :)


  1. I've been keeping you in my thoughts. So good to see you are doing better.

  2. Your documentation is amazing and should be published in a medical journal!! I have never seen anything so well documented and from experience on the patient side. You are amazing, continued prayers for you