Monday, September 18, 2017

Just don't have a very good feeling tonight.....

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… always……I’m still in His hands……..

Tuesday, September 12, 2017

Preop, surgery, and postop.....

We made it home - safe and sound. I'm actually feeling pretty good (thank you, pain pills!), just very weary. I'm probably feeling better than Guy, bless his heart. But he is the one that wanted to come on home to LR. Nothing like your own bed to sleep in, although Mark's beds are quite comfortable.

My biggest fear I think this morning was getting my power port accessed for the IV. They seem to have had trouble the last several times there. The problem is that they only stock 3/4" needles, and the infusion centers always use 1". This is the needle that goes though my skin and directly into the port. (I always put lidocaine cream over the port area and cover it with Press N Seal.). I had as really swell nurse this morning who had a preceptor with her. The nurse was doing it all and explaining everything she was doing. As she was preparing to access the port, I asked her if her needle was 3/4 or 1. She said she had both. (Surprise!!) I told her they always had trouble with the 3/4 and the infusion centers always used 1". She said, "Oh! Thank you for sharing that with me!" She asked to have the 1" apparatus dropped onto the sterile field, and proceeded to slip it into my port, slick as a whistle!! I thanked her for making that procedure go so well. She was very competent, sweet, and had a great sense of humor.

Thank you, God, for sending this lady to care for me during the preop part of the morning. You knew just what I needed this morning to calm my fears.

The last time I went to the OR room, I had to slide from the cart to this very cold table that was covered by a cream-colored plastic thingy - brrrrrr! This time the table was covered in sheets and bent into a shape that I presumed was going to fit my body once they turned me over. However, anesthesia told me they would put me to sleep right here on the cart. Nice!! So I started breathing the oxygen through the mask. And promptly woke up in recovery!! 😊

The Dr told Guy everything went well. I saw him in the preop time, and he drew all these marks on my head. That squiggling on the lower neck was just to mark which side - they always have to do.

He told me all these different kinds of dressings he might sew onto my head to cover the site that would remain until we heard from pathology. He said he would determine which one after he got in there. I showed him the area of my concern - where all those rashy-looking, itchy bumps were from the lower stitches to almost my ear. He looked it over carefully, knowing my suspicions from that biopsy turned out to be true, and he marked it well to include my suspicious areas. He said he would take what he suspected - and then take a little more beyond that - thus the solid and dotted lines. That's what I wand to hear! I told him my ear was itching a lot, but I wondered if it might be the feeling coming back into it. He chuckled and said, "Well I'm not taking your ear this time."

As soon as I awoke in recovery, the usual vital signs were taken and the "Take a deep breath," instructions given. Soon she gave me some fentanyl for the burning-type pain and 2 oxycodone to get on board. Then came the crackers and Sprite which meant that the wheelchair would not be far behind!😊 It is just about "drive-thru-surgery" these days. After the crackers and Sprite, it was time to get dressed. Guy helped me with that. He took a picture of the dressing. I must say I've never seen anything like this!! It is a foil-type mesh. Enlarge the picture, and you can see the mesh part. (As well as some STAPLES!! Staples??? He didn't say anything about staples...oh, well....I guess it is not coming off of there until he takes it off) They said the next time I saw him would be in surgery again.

Then Guy went for the car. He had had to park on the top level so I knew he would be a bit. I leaned back to rest, but it was not long until here came the wheelchair. The pain pills had kicked in by then, so I was feeling pretty good.

It was 1:00 as we pulled away from the hospital. One hour in recovery. We got to Mark's with no problem, and they loaded our things into the car, including Annie, of course! And we took off. It was rush hour, but we didn't have far to get out of town. Since I had to be at the hospital this morning at 8:30, we were in big-time rush hour, but Guy did a good job, and we were not late.

OK, that's enough for tonight. Just praising the Lord for the day - made it through surgery well and safely home. Thank you all SO MUCH for your prayers and encouraging words!!!! Love you all!! ❤️❤️❤️

And as always....I remain in His hands...

Wednesday, August 30, 2017

Stitches removed and biopsies taken

We left early this morning for KC rather than going yesterday since my appointment wasn't until 1:15 this afternoon. This was to see my plastic surgeon to have my stitches removed from the August 10th surgery. Dr. Przylecki had called me after the last surgery to tell me that even though he had removed the recommended 1mm all around the wound plus even more, the pathology report was still questionable on one side - the side away from the original flap.  I need to include the picture of the surgical area in order to describe what I'm talking about. 

BTW, it is not everyone that has the initial of their last name branded on the back of their head! 😊 The lesion that was removed was in the 9:00-10:00 position. The path report was questionable in the area of the 1:00-2:00 position. That was because of the remaining inflammation. The rest of the margins were clear. I had sure would rather have heard that ALL margins were clear!! But what bothered me was the area of the 7:00-8:00 position and below- and that little area that went out to the left. That area itched almost constantly. If you will recall, this last lesion itched a lot. None of the other spots ever itched. So of course my paranoia kept wondering if I was growing another itchy one like the last one. Anyway, taking out the stitches from the start of the "C" clear around to the 8:00 position didn't hurt at all - no feeling in that area. However, the rest of the stitches (in the itchy area) was another story. The closer to my neck you get, the more tender the area. Thankfully, it didn't last long! He kept making comments that he was concerned about the "bump" at the 2:00 position. I hadn't worried about it because I thought that was just where the flap kind of turned up, and that it was just the way it was stitched. But Dr. P said something about maybe a cyst there. At any rate, he thought he should biopsy it. Especially since that was the area in question in the path report. I said, "Well, the area I'm most concerned about was where it itched."  He said, "Well, I'll biopsy that area, too."  The 1st one was a snap because, I had no feeling in the area. The 2nd one - YIKES!  That shot really hurt!!  And then I felt the biopsy being taken and the stitches!  But I just groaned and gripped my knees. (I was sitting in a chair with my forehead resting on the edge of the exam table.)'s still not over!  Now I await the next pathology reports!  The nurse said if I had not heard by next Wednesday, to call her. She also said that she cannot give out "bad" reports - it has to be him. So, I'll know now if she cannot tell me the report, it will not be good. I surely pray the next voice I hear from this office is hers, and not his!!

Tomorrow morning, I'll see Dr. Mammen, the original surgeon. Since Dr. P had consulted with Dr. Mammen over this last path report, and since I had not seen Dr. Mammen for several months, I made an appointment with him to get him back into the loop. I wanted him to see the latest incision. Dr. P is basically just a "repair" surgeon, where Dr. M sees cancerous tissue all the time. Since Dr. M had told Dr. P during the consultation process that he was "not inclined to chase after it," I rather suspect that if either of these biopsies is positive, I'll be going back to Dr. Powers, the oncologist, and he will most likely start chemo again. 

I left the dr's office this afternoon rather discouraged because I really wanted those stitches out and just get on with my life - until the scans the 3rd week in September. But then I knew that getting down in the dumps would not help any. It wouldn't change a thing - other than make me miserable and not help with the healing. So, I have to, once again, trust my Maker to know what He is doing. I have made it through the 1st year, and, although I've been slowed up a good bit, I'm still very blessed to feel as good as I do. As always, I appreciate your prayers more than I can express. I'm quite sure they are a big part of why I'm still here. 

And as always, I remain in His hands...

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……