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…….


  1. You are a beautiful intelligent Godly women. Your faith is strong and your hope is refreshing and reading your doubts but hanging on the promises is inspiring. I don't understand why you have such a burden to bare it just isn't the way anyone wants to celebrate retirement. I'm praying for you too and I hope you keep your strength and kick this to the point of having some freedom from these chains. God bless you and Guy, for he is a true blessing to you and I know you are grateful for him everyday. Love to you!

  2. Thank you for such kind and encouraging words, Joanna! They and your prayers mean so much to me! ❤️