Tuesday, August 15, 2017

Doctors’ visits today…..

I started out with two scheduled doctors’ visits today, and ended up with 4!  I saw my primary care physician at 8:00.  He suggested going back on Cymbalta – half the dose – until these horrid WD symptoms even out – then taper gradually – skip a day now and then, etc.  These sites that I’ve been reading all say that most doctors will tell you to do it that way, but don’t – use the bead-counting method to be more consistent and to experience the fewest issues.  My oncologist here basically said same thing as my PCP when I met with her at 9:45.  Well, I'll end up doing what I think works best for me. Both thought my head was healing nicely.  I had to catch them both up after the last two surgeries.  This was Dr. Haenel’s first week back after her maternity leave, so she had a little more catching up to do.

One thing I did not mention in my last blog update is another issue.  I decided to wait until after seeing the doctors to even mention this.  While I was at Mark’s, I bumped into the sharp corner of his bed (where we were sleeping) in the dark one night.  I think it was last Tuesday.  I didn’t think too much about it.  The next day or so, I noticed a little bump on my right shin – about the size of a very large pea.  But there was no bruise, and it didn’t really hurt and wasn’t sore.  So, I pretty much dismissed it.  A couple days ago after showering, I saw that it was *visible* – now about the size of a walnut, and it was rather sore, and even ached sometimes.  Still no bruise or discoloration.   

My PCP said it seemed a little firm for a hematoma.  Given my history, he thought just to be safe, I should probably have it biopsied.  So, he immediately called Dr. Kelley, the dermatologist (who biopsied my original lesion back in Oct), and got me set up for 11:00.  We are all so paranoid over these things that crop up on my body!!  My oncologist said, it seemed moveable, and she didn’t really think it was another cancer cropping up.  She thought it looked more like a hematoma.  She said that Dr. Kelley might want an ultrasound of it before the biopsy to see they could tell if it was fluid-filled.  When I saw Dr. Kelley, he said it was quite moveable which was more indicative of a hematoma, where a cancer is more fixed, spreading out into the surrounding tissue.  He didn’t think it needed biopsying.  He called over to radiology to see if they could get me in for an ultrasound and perhaps a needle aspiration to see if any fluid could be drawn from it.  Yikes!  By now, there had been enough poking and prodding on it, the thought of someone sticking a needle into it was certainly less than desirable!!!!  So, over to the radiology department I went.  The tech put some lubricant on it, and rubbed her wand over it for some time.  (Wish it had been a MAGIC wand and made it go away!) Then the radiology doctor came in and did the same thing.  He seemed puzzled.  He did not think it had fluid in it, so he saw no reason to stick a needle in it. (YAY!!)  It (whatever it was) seemed to sit on top of two deep varicose veins.  He really didn’t have an answer for it, but given that there was a trauma that occurred (hitting the sharp corner of the bed), it might be just some inflamed tissue.  He said to watch it a few days, and if it continued or got worse, he would MRI it.  I had really hoped that the ultrasound would just confirm a hematoma, and I would just wait for it to eventually absorb.  But noooooo – now I have to worry about this thing for more days – or weeks!

Can you believe this????  What else weird am I going to develop????  Can I not just have the usual little things????  Or can I not just get a plain BREAK for a while????   God, have you not already got my attention – a few “issues” back???

Do I sound a little irritated tonight????  Maybe I could tolerate it a little better if I didn’t have this “swirling” in my head, nausea part of the time, diarrhea going on for the 5th day, shortness of breath just out of the blue, HOT FLASHES, and this FOOT! sound in my ears!!  And trying to figure out last night’s weird dream!

OK, I got that off my chest……been a long day…..think I’ll go to bed.  Surely, I’ll be in a better mood tomorrow.  It will be another day of reinstating the Cymbalta, hoping the WD symptoms will ease up eventually.  In a couple weeks, I’ll try to begin the slow tapering. 

I’ll be OK.

As always…..I remain in His hands……

Monday, August 14, 2017

In a very big dilemma right now……

Back on the 28th of February, my Hutch oncologist put me on duloxetine, Cymbalta, for the neuropathy in my feet. Dr. Powers put me on gabapentin (Neurotin) for the terrible hot flashes that the chemo caused.  He said that would also help with the neuropathy.  To tell the truth, I don’t know if either one helped with the neuropathy, but it could be that they helped to prevent it from getting worse.  I’ll never really know about that.

Last week Mark needed to be out of town all week for his job and needed someone there with the boys and the dogs, so we went up on Monday rather than just the night before my surgery. On our way there, I got to thinking that I would like to get off of the above two drugs.  I had been off chemo for eight weeks, and my feet had made some improvement, so I didn’t think I particularly needed them. Plus, I hated the side effects of both – wanting to sleep all the time, blurred vision, loss of balance, dry mouth, dizziness.  So, I called the oncologist’s office to see if I could discontinue them and how I should go about it.  I didn’t think you should just stop them.  Well, I didn’t do my homework, which I should have done.  First of all, I should have waited until the whole surgery thing was over.  Secondly, I should have done a WHOLE lot more reading about duloxetine before contacting the dr.  But I was concerned about the upcoming surgery and wasn’t reading as I should.  When the nurse called me back, she said the doctor said I could stop duloxetine now, and I could cut the dosage of gabapentin in half that week and stop it completely the next week.  So, I did just that.  The last 60 mg of duloxetine was taken last Monday, Aug. 7th.  The surgery went great, and we came home on Friday.  I felt great that whole time.

Saturday morning, we went to Hutch, and I went into Walmart to get a few things while Guy went to a couple other places to get a few things.  I was taking my time, and suddenly I felt very dizzy and like I was going to faint.  I paid for my things and sat down at the front of the store to wait on Guy who was off running his errands.  I texted him I was ready and feeling weak.  The more time passed, the worst I felt – all over.  I went home, and wondered what in the world was happening to me.  I began to look at the only thing that had really changed – I had stopped duloxetine.  Everything I saw said NEVER stop this drug cold turkey.  I was experiencing all the withdrawal symptoms (EXCEPT thoughts of suicide)
1.     DIZZINESS – I’ve been dizzy before, but this was not like any dizziness I had experienced.  It is like something spinning crazily inside my head.
2.    Diarrhea – sometimes every 15 minutes
3.    Tremors of my fingers
4.    Loss of appetite
5.    Nausea – not to the point of vomiting, but just puky-feeling every now and then.
6.    Shortness of breath – like I just can’t breathe deeply enough.
7.    Weird sounds in my ears – like the sound of “FOOT!!”
8.    Nightmares – not really bad ones, but just very VIVID dreams.  This was unusual because I had not been dreaming for months.  And usually when you dream, you remember your dream and think nothing more about it the rest of the day.  But these vivid dreams keep coming to me during the day, as though I’m trying to remember all about them.
9.    Increased BP – from 162/103 Sunday morning to 144/95 this morning.  My BP has been really good prior these last few days.

Then cutting back on the gabapentin caused hot flashes and itching everywhere.  But the latter two symptoms were NOTHING compared to the WD of the duloxetine.

I kept reading about the “bead method” for tapering off of duloxetine.  And then I found a very helpful FB site run by doctors to help people get off of this HORRIBLE drug.  I began to realize what a MAJOR problem thousands of people are having getting off this drug!!  Most people began taking this for depression – I just wanted some relief from my neuropathy. I had NO IDEA what I was getting into.

Y’all know that I am NOT CRAZY and never have been.  I have never suffered from any depression and don’t now.  But let me tell you, these WD symptoms are VERY real physical symptoms!!  And they have totally messed up what was a very nice recovery from chemo and surgeries these last 8 weeks

Since I had only been off the duloxetine for a week, one the administers of this FB site suggested that I go back on it just to get rid of these horrible side effects, and then under the supervision of a doctor, begin the tapering off using the bead method.  The bead method is very exact – you open 3 capsules – one at a time.  You count the number of tiny white beads in each capsule and take the average of the number of the beads in each capsule.  Then you take 10% of that number and remove that number of beads from the capsule.  Put the remaining back in the capsule and take that capsule.  Take this number of beads for 2 weeks and then reduce the beads by another 10%.  You might have to reduce by 5% or even less if you experience symptoms again.  This will most likely take up to a year or more, depending on how much your dosage is or how long you have been on the med.  Knowing how tiny these beads are and how precisely and consistently you need to be, you can see how going off this med cold turkey is a HUGE NO-NO!  I had NO idea!!!!

So, this morning, before trying to go back on the duloxetine, I called my primary care doctor, and I’ll see him in the morning at 8:45. (KC wanted me to see him when I got home just to do a post op check anyway.)  I found out my Hutch oncologist is back from her maternity leave, so I’m going to see her at 9:45.  She put me on this, so she better know how to get me off of it!!   And she needs to be caught up on my last two surgeries anyway.

I’m just so frustrated over all this because I was doing so well.  I didn’t really need this bump in the road!  And I’m really aggravated with myself for not doing my homework before stopping this medication.  I should have caught this and questioned my doctor when he said to just stop it.  A case for 2nd opinions!!  I’m anxious to see what the doctors are going to say tomorrow.

For those who do not follow me on FB, at the end of the last blog, I was getting ready to see the plastic surgeon to see if he, too, would recommend removing the remaining spot after completing chemo and radiation.  He, too, concurred that it should come off, and he wanted to remove it the next morning!  OH!  OK, well, while we are here, we might as well go on and get rid of it.  He scheduled me for 1st thing the next morning.  He took out a section about the size of a silver dollar.  He placed an artificial “skin” over it and sent me home, waiting for the pathology report to return before closing the wound.  A few days later, I called and the report on the margins was “inconclusive” because of the large amount of inflammation caused by the radiation.  The recommendation was to remove another 1 mm of tissue all around before closing the defect with a graft from my leg.  A large dressing remained in place until the next surgery which was scheduled for about 2 weeks.   

I guess it was because of the pressure from this dressing, but that was one of the most painful two weeks of all of my surgeries.  So, it was on Aug. 10th that Dr. Przylecki did the reconstructive work from this latest removal.  I couldn’t have asked for better results.  He was able to take some tissue near my neck to fashion a little flap that he rotated up and stitched down over the wound.  You can see by the picture what a neat job he did.  

Not everyone has the letter of their last name “branded” on the back of their head!!  :)  AND he didn’t have to use a graft!!!  No donor site on my leg!!  WOOHOO!! I go back to KC to get my stitches out on Aug. 30.  Then I go back the 3rd week of September for all my regular scans.  Hopefully, between now and then NOTHING shows up!

And hopefully, I’m up to attending the Kansas State Fair, which is not far off!!  Most of you know how I LOVE the KSF!!!

So, for now my main prayer request is regarding these AWFUL, incapacitating withdrawal symptoms!!!  If I can just get rid of them – even if it means following this tedious bead method of tapering, I will be SOOOOO grateful!!!!  Thank you soooo much in advance!!!

And as always…….I’m in His hands……

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!  😀

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. :)