Wednesday, November 8, 2017

Had to have 24 hours to process.......

Last night I wanted to write, write, write my thoughts and feelings (which were all over the place), but I was just too tired.   Plus, I think I needed at least 24 hours to process my thoughts and feelings over the last day’s events.

Yesterday I got a CT scan of my chest, abdomen, and pelvis here in KC at the KUMC.  This was one month from the last regular (every 3-months) scan and the microwave ablation of my liver. They wanted a one-month scan because of the liver spot that was found and zapped from the last scan.  I was not really worried about the scan because 2 weeks ago I had one in Hutch, and it was perfectly fine. 

Let me back up a bit and talk about that issue.  One evening, about 3 weeks ago, as I got up from my recliner to go to bed, my left side kind of hurt – like I had maybe pulled a muscle or something.  When I got in bed, as I turned from my left side to my right side, I felt a definite POP, and the pain was very sharp and excruciating.  And that pain continued.  The next day, I went to my regular doctor in Hutch.  His thought that I probably cracked a rib when I turned over, and he sent me to get a left-side chest x-ray.  The report came back negative.  He didn’t really know what the problem might be, so he scheduled me for a CT scan of my chest for the next week.  On our way home, I got a call from the dr’s office, and the nurse told me that they just discovered the x-ray department x-rayed the right side of my chest instead of the left!  (I knew that was either a student or a new tech, because the person behind the screen was telling her every step to take.)  She said when I came back for the CT scan I could get the left side x-rayed. (As it turned out, it was decided that I didn’t need the chest x-ray if I was going to get a CT scan.)  So, anyway, the scan didn’t not show anything out of the ordinary.  In fact, it said specifically that the liver looked fine.  However, the pain in my left side has continued.  It has very gradually gotten better, and I no longer yell out in pain when I get in and out of bed.

OK, back to the present… I said, I was not worried about the scan yesterday.  I was more concerned about this place on my left forehead and the red blotches on the top and side of my head – and the red blotches that have appeared on my left cheek.  (insert pictures)

 After the scan, we met with Dr. Powers at 11:00.  He is always cheerful and compassionate, but he always gets right to the point.  He had just come from consulting with the radiologist and looking at the results of my scan.  He said there were no new spots on my liver, and the other spot was GONE! ZAPPED  Woohoo!  That made me feel good!!  However (I HATE that word!), there are two new spots – and they are in the lungs – one in each lung.  BUT they are very tiny (a few millimeters).  He pulled up the pictures on the computer screen.  He showed me how you barely could see them – one in the very lower edge of the right lung and one in the top lobe of the left side.  He said he could not even tell me for sure that they were angiosarcomas. They might be little places of infection of inflammation.  But given my history, and the fact that they were not there a month ago, they were worth keeping an eye on. 

Whew!  That certainly took all the wind out of my sails!  Nothing like having very high hopes and getting them completely dashed! 

He looked at the spot on my forehead and the red blotches.  He really didn’t seem terribly concerned about the blotches, but thought the spot on my forehead would bear watching.  He didn’t seem overly concerned about any of it, but still thought that I needed to go home to continue healing. He looked at my head and leg (donor site) and said that these all needed to heal before he would choose to do anything else. 

I told him I wanted to get my eyes done (cataracts and droopy lids).  He told me to go right ahead and get all that done while me head and leg were continuing to heal.  He wanted to see me back in 6 weeks – unless this thing on my forehead gets a lot worse.  Most of my spots have progressed faster than this one and haven’t really looked like this.  Of course, that monster on the back of my head (with the HAIR) didn’t look like any of the others either!

I told him that Dr. Haenel had left the Hutch office suddenly, and no one knew anything about her.  He seemed pretty shocked.  He knows I do not like Dr. Estaphon.  I told him about my last visit with him and how rude he was – telling me emphatically how, if I began to take Avastin, I would be on it the rest of my life, and how I had stage 4 cancer – STAGE FOUR (holding up 4 fingers and thrusting them at me!) cancer – and I was NOT going to be cured!  I got all riled up again just talking about it!!  Dr. Powers told me that I would not necessarily be on Avastin for the rest of my life.  There could very well be times that I would not be on chemo/medication depending upon my responses.  And he said he was not sure if Avastin would be the next step. 

I had asked him about cancer markers and immunotherapy that I had been seeing and reading about.  He said he was planning to send in my biopsies that contained the angiosarcomas to have them studied for cancer markers and DNA studies.  He said it would take a few weeks to get the results back.  The results could be no markers found or one or 6.  If it came back with just one, he would know specifically which med (immunotherapy) to use.  If the results showed many markers, that would make it more difficult to know what to use.  This is the newer research/treatment that is being done/studied. 

He said that we had discussed before about how I was likely to be dealing with some aspect of this caner for the rest of my life (and I knew that), but he has always given me hope. He’s always very direct when there is something definitive to tell me, but he always gives me hope when it comes to treatment.  I told him that as long as there was treatment for me, I was up for it - ready to fight it always.

I asked him if he knew a Dr. Page, an oncologist that provides treatment at McPherson.  He said he did know him, and he was a very good doctor.  He is based out of Wichita and is part of the Cancer Treatment Centers of America.  Hutch is NOT a part of that, which has always bothered me a bit from the beginning.  When Dr. Powers very first started looking at finding me a doctor and treatment center closer to home, he mentioned McPherson.  At the time, I thought that Hutch, being a bigger place, would have the best care – that McPherson was just “small potatoes”.  But we were new back in Kansas and didn’t realize that McPherson actually has a good hospital.  Since that time, we’ve heard from others about the good care received there.  Plus, that ER is where Guy went when he got that bad nose bleed a few months ago, and he was treated very well.  SO, no more Dr. E!!!!!  Dr. Powers’ nurse told me that she would definitely set me up with Dr. Page, and his office should be calling me to set up an appointment.  McPherson is closer to us than Hutch is, so that is a bonus, too.  I really hate to leave my two favorite nurses at the Hutch infusion center, but as soon as they finish their nurse practitioner schooling, they will be leaving there anyway.  I’ll stop in and see them occasionally, as I have been doing since my chemo stopped in June.  I’m just so relieved there is a better option than Dr. E, and I know Guy is happy about that, too.

When I told Dr. Powers about the pain in my side, his first thought was a cracked rib.  He said a cracked rib might not show up in a CT scan.  If it was getting better, he did not feel it was a concern.  He assured me that there definitely was no mass causing me pain in that area.  And if it were a cracked rib, there was nothing that they would do about it anyway.  Those things just have to heal on their own.

When we left and headed back to Mark’s house. I was a bit discouraged, to say the least.  I told Guy I had so hoped to get a clear scan.  It just doesn’t seem to happen anymore.  Bless his heart, he always has encouraging things to say to me.  He reminded me that they didn’t even know if these teeny tiny spots were angiosarcomas, and we shouldn’t assume until we know.  He’s right of course.  But it’s hard to stay positive all the time when you keep getting news like this.

When I was getting ready for bed last night, I got to thinking about the whole situation. I guess that is dangerous at night…….But I got to thinking, I just don’t understand…..I have faith, I pray every day to be healed (“You have not, because you ask not”), and soooo many are faithfully praying for me (please don’t give up!!!!)…….and yet, I’m not healed.  It’s hard to keep the faith when your prayers are not answered.  I know you must pray that God’s will be done…….and it may not be His will for me to be healed on this earth.  That’s hard to think about.  I keep telling Him I could do so much more for Him, if I could just be released from this curse and get well.  I know He often says “wait.”  But there are other prayers I have prayed desperately for that I know are God’s will (it is His will that all come to repentance), and they are still away from God, doing their own thing.  Yes, I know about people having free wills.  There is another thing I’ve prayed for for nearly 50 years!  And I see no change!!  It does get discouraging!  Then I wonder… I have enough faith????

I know I must work constantly to focus on Him……and Him alone.  The devotional book I picked up not long ago at Hobby Lobby – Jesus Calling-Morning and Evening – has been such a blessing to me and much of the time is exactly what I needed for that day.  I had the regular Jesus Calling, but I had never seen the morning and evening one. Here’s an example:

Each day He speaks to ME directly.  I can tell you that I could not do this – this journey – if He did not speak to me directly each day, if He did not hold my hand (and many time just carry me), if He did not pick me up when I get down, if He did not give me His peace and comfort. There are so many distractions today, so much trouble in our country, so many burdens to bear, so many heartaches, I could never make it without Him speaking to me morning and night and all the times in between. 

If you are reading this, and you do not know Jesus as your personal Savior, stop right now and ask Him to come into your heart and life.  You will NEVER be sorry!  And best of all, we can all live forever with Him (and each other) in heaven!!  We don’t have to be separated (after death) for all eternity!!!

As always……..I’m in His hands…….

Friday, October 13, 2017

Pictures.....look at your own risk..... :)

I’m going to post some pictures here for those that have the stomach to look.  My nurse friends always want to "see the details."  Tonight, I got a look at the wound with the graft – from the last surgery – the one the doctor said look so good.  I’m not sure what his measuring stick is, but I would not have used the word “good”.  But I don’t know what other positive word he could have used.  Anyway, I needed to change the dressing on it, so I had to take it off.  Honestly?  I almost cried!  Is this really what I will live with for the rest of my life??? I came out of the bathroom, and said to Guy, “This is really not pretty!”  He tried to reassure me by saying that the edges were swollen and red, and that would decrease with time.  He reminded me of how ugly my arm was as it was healing, and how it looks today.  Well, my arm is still not very pretty today, but the sight of it does not bother me.  Guy dressed it back up like they had done it since I can’t really do it one handed while holding a mirror.  I sure hope I’ll be able to wear a wig before too long.  The good thing is, winter is coming, and I have lots of really cute hats.  All summer, I’ve just gone bare-headed.  Most of the time I’ve had some kind of bandage back there.  But this little number will have to be covered for a while.  OK, I’ll have you scroll down to view the picture.  And then I’ll add some others.

That is some crater, isn't it?  It's not like the nice full flap in the upper left of the picture.

 I guess I’ll go ahead in include the picture of the wound before the graft, because, frankly, it’s not a lot worse than the one above! The gray is from the bolster that had crystalized silver nitrate embedded in it.

Here is my arm as it was healing and then completely healed.

I’m just hoping that over time, there will be some measure of improvement in the appearance on my head.

But as always…….I’m in His hands…….

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....