Wednesday, October 11, 2017

The Roller Coaster Ride Continues…..

I guess Ill go back to the day of the microwave ablation, Oct. 2.   I had to be at the hospital by 6:15 am.  I actually like being the 1st patient on the procedure list.  For one thing, the traffic across town is a piece of cake.  Another thing is, the team is not behind due to a longer case ahead of you.  This procedure was not in the regular surgery area.  It was in the interventional radiology department.  From the small waiting room, you would never guess what a huge department is behind that door.  I was taken back and prepped just like going for a regular surgery.  I was taken back to a room where the scanner was and put to sleep on the cart.  Recovery was just like recovery from regular surgery.  The doctor came by and said, It went well.  The spot is GONE!!  They gave me a pain pill, and I went home to Marks.  I never did really have any pain from it.  It only hurt just a little when climbing the stairs at Marks to go to bed.  All I had was a little poke mark at the base of my sternum.

After going home to LR, I was to see my oncologist and my PCP for a 4 month checkup.  I went to my infusion center so they could draw some blood that was going to be required for the PCP and oncology visit.  While there I changed my oncology appointment so that I could go on the same day as the PCP appointment.  No problem; they changed it.  Then the very next morning, I got a call from my oncologist saying, I need to reschedule you with Dr. E because, Dr. H is not in the office.  I asked if that was permanent.  She said, As of today, she is no longer in this office.  I said, WELL, THAT IS JUST AWFUL!  Of course, she would not tell me anything.  I just couldnt believe it! What in the world happened overnight?!?!  I knew her premature baby had come home from the hospital not long ago, and at first I wondered if she just wanted to stay home with her, but she would not have left overnight without letting her patients know.  I was so upset because I do not like Dr. E.  When I had to see him during Dr. Hs maternity leave, I was not at all impressed.  Colleen was with me in June when I saw him.  He told me if I were to be with him on a longterm basis, he would reserve the right to change some of KUs orders if he felt it was warranted.  I said to myself at the time, Oh, no you wont!!!!  I was done with him at that point.  He wanted me to skip the upcoming chemo infusion, and I told him I was not comfortable with that.  I could see him promptly dismissing me, and he left the room.  I decided right then and there, I was not going back to him.  The Hutch doctors are just a conduit through which orders from KUMC flow.  They look at lab work and evaluate anything that might appear out of the ordinary.  So when I got rescheduled to see him, I was not a happy camper. 

The next time I was in Hutch, I went to the infusion center to ask my two favorite nurses what in the world had happened.  They told me they had no idea.  One of them said, It was a shock to ALL of us!  A shock to ALL OF US!!  They were all very upset by it!  And they felt really bad for me.  A few days later, I heard that there was an oncologist in McPherson.  The day I was to see Dr. E, I asked some of the infusion nurses if they knew anything about him. They didnt, but said they had heard good things about him.  I really didnt want to change infusion centers in the future, so I decided to just not do anything until I saw Dr. E.  If that visit went like the 1st one, Id check out the McPherson doctor.

So, that afternoon I made sure Guy went with me to see Dr. E.  His first words were to apologize for Dr. H no longer being there.  I could tell they were words that had been said a hundred times, as though I had never seen him, and I already had.  He seemed to be up to date on my case.  He wanted to know what the plans were for the future.  I told him I had a post op check coming, and as soon as the current wounds (on my head and my leg) had healed, the KU oncologist planned to put me on Avastin.  I asked him how long does the Avastin therapy usually last.  He told me emphatically, The rest of your life!  You will always be taking that medication.  You have stage 4 cancer! (holding up 4 fingers) – stage four.  Since you had that spot in your liver, it has gone all through your blood stream. You will never be cured.  You will have this the rest of your life.  Just like that!!  (Stage 4 cancer just means that it has traveled from the original place to another place.)  Then he went on to say that he would just being following whatever orders KU sent, and he really didnt need to see me again any time soon – 4 to 6 weeks.  I chose 6 weeks. And he was gone!  At the time, I took that all in stride, but later in the evening, as I was sitting at home, I got to thinking about what he said.  He never gave me any kind of hope – I would have this the rest of my life, and would have to treat it as such.  One of the times I had asked Dr. H about the prognosis, and she told me that this cancer eventually ends up in the liver or the lungs, but somehow, I didnt feel like she was signing my death warrant.  Dr. Powers, my KU oncologist, is one of the most caring and compassionate doctors that I know.  He pretty much answers my questions, giving me the straight scoop when necessary, but always gives me hope.  Dr. E has been there for several years and has treated many patients that like him.  I guess it is a difference in philosophies; I just dont care for his.

This week Ive been conversing with a friend on Messenger, and I found out his brother had angiosarcoma in 1965.  He was treated at KUMC, and was followed up there for some time, but he is fine today.  That gave me a lot of hope.  I dont want false hope, but I dont need someone sucking the wind out of my sails either.  I may very well not get over this, but Im going to do what I can to live to the fullest while Im still here with hope.  And if God so chooses to heal me here on this earth, then I will certainly spend the rest of my life giving Him the glory.

The last surgery – a couple weeks ago – a graft was taken from my leg just below the donor site from the flap surgery (Nov 2016).  The graft was about half the size of that 1st one.  And it was taken from an area which was still numb from that 1st surgery.  The new donor site has been doing very well.  Ive been treating it like I treated the 1st one.  It has given me no trouble.  That bolster on my head was another issue!  Here is a picture of the dressing that was put on after surgery.  

Not sure why it was put on clear over my neck – I guess to catch any drainage (which I never had with this surgery).  The week after that surgery, when I had my ablation, I stopped by the plastic surgery office, and the nurse changed the dressing to this one.

What was under this dressing is this. 

It is called a bolster.  Im not quite sure of its purpose, but it helps to heal.  It is stitched to my skin around the site.

That has been painful – not as painful as the metal one that I had for so long, but painful, nevertheless.  For some reason, last night, it was particularly painful.  It ached all the time, and then would have stabbing pains every once in a while.  I took a Tylenol when I went to bed, but had to get up and get a pain pill.  I had not taken one of them for over a week.  I think those areas where the stitching was had kind of dried out and was irritating.  But the whole thing just hurt.

When I had the liver ablation, they gave me ancef during the procedure – an antibiotic that is a cousin of penicillin.  Im allergic to penicillin, but Ive taken ancef before.  They sent me home on generic Keflex – which Ive taken before.  Ive always taken Keflex (turquoise capsule), but they gave me the generic (red capsule) to take for two weeks.  I was kind of starting to get a rash, and after one pill, I broke out in a red raised rash that itched like crazy.  I was already itching from withdrawal side effects of tapering off Cymbalta.  Can you say itch, itch, ITCH?????  I called the plastic surgery office, and the nurse said to stop the red capsule, and doxycycline was ordered.  I took all of it but two capsules because the rash kept getting worse.  That was about a week ago, and it is still with me, and seems to be spreading a bit – all over my trunk and legs and arms.  When I went to see my PCP, he gave me a steroid cream to use twice a day.  It makes it bearable, but has not stopped it.  Oh, well..if its not one thing, it is another!

Well enough complaining for one night.  Lets end this on a good note.  I went to the plastic surgeon for my post op check today, hoping he would take this bolster off.  Two med students came in ahead of him.  One was working on my leg and one clipping the stitches of this bolster.  I had already taken a pain pill about an hour prior to this, remembering how painful it had been before.  It didnt seem to be as difficult getting this one off.  When the doctor came in, he was very pleased and excited.  He said, Its healed!  Those bolsters really work.  Its not going to be pretty, and it wont grow hair, but it looks really good, surgery-wise.  Well, Im not really worried about the looks – I just want to done back there!!   They redressed it with some XeroForm, gauze and tape. (Forgot to get a picture – will get one tomorrow when I change the dressing.)  Im to change it and my leg daily.  I can shower in a week or two – just dont let water from shower hit the graft directly for a while.  SO!  That was all very good news, and Dr. Przylecki was all smiles!!  I just come back to see him in a month.

Oh, here is some more good news.  Guy was diagnosed with type 2 diabetes some time ago.  Well, that is not good news, but the 1st med the doctor prescribed didnt seem to work very well.  This last time he saw his doctor, he changed the medication, and it is now working.  But, thats not the really good news.  Guy has had A-fib for some time, but controlled.  His PCP decided he should see a cardiologist.  He did, and he ordered a stress test for him to wear a holder monitor for a few days.  He just got word that his stress test was normal and so were the readouts from the monitor!  Woohoo!  Praise the Lord for that!!

Time to go put on the anti-itch cream, before I scratch myself to death!

Oh, here is another good thing!  My very good friends that we went to church with in Alabama, but now live in TN, sent me these beautiful flowers.  That was sooo sweet!!  Just made my day!!  I miss them sooo much!!

  And as always........I'm in His hands....


  1. All things work together for the good to those that love God and are called according to his purpose. God is doing. Glad for the good reports. Keeping you in My prayers.