Thursday, November 17, 2016

Good News, Bad News Day

I’ve waited all day to write this because I just couldn’t do it.

The appointment with the cancer doctor was at 8:40 this morning.  I actually saw his PA, a very nice friendly lady.  This appointment was just to talk about the future plans for me. She told me that the margins from this 2nd surgery were clear.  When I about had a shouting spell, she seemed surprised.  She thought the nurse had already called me about that.  (Yikes!  That’s kind of important information to pass along to the patient!!)  Anyway, because everything tuned out clear, including a couple more lymph nodes that were just accidently taken in the 2nd surgery, there would be no further treatment.  They would set me up today to return to see the cancer surgeon and a medical oncologist in 4 months for a CT scan – just precautionary follow ups.  So I left there feeling soooo happy!!  I was on the way to recovery!!!

We stopped at the little boutique to look at all the different styles of caps and hats and tried on a few.  I’ll need something to cover this half bare head for the winter until my hair grows back out.  I knew I had 3 very different ones coming in the mail, so I just bought one that was different from them.  We went down to the cafeteria to eat a little breakfast, and I wore my cap.  As I sat there, I thought, “Here I am….a real cancer patient now.  I don’t look so different from many others walking around.  I don’t stick out with my very obvious surgery that is very apparent on my head.  Those thoughts still didn’t seem to fit with me.  When I got in the car, I took it off.  I thought I probably shouldn’t be wearing anything over those stitches until it heals a little more, and the stitches become little more comfortable.  I can’t feel the ones higher on my head but the ones near my lower neck are a little tender yet.

We drove home to Mark’s house, and just as I got in the door, I put my hand up to the top of my head, and was STUNNED!  I FELT A LUMP!!!  I told Guy to come over in the sunlight and look at this!  He did, and he said, “It’s purple!” NOOOOOO!!!! My heart dropped to the soles of my feet!  It was 11:00, and I knew that these doctors were only in that office on Thursdays.  I HAD to get back to that office.  I called and got the nurses’ email and left a message.  I called her pager number.  She and the PA were with a patient.  I told Guy, “Let’s just get in the car and go.  They can’t refuse to see me if I’m in that office.”  On the way, she called. I told her we were on our way.  She said, “Well, we have a full patient load, so we’ll have to work you in.”  “That’s fine, but I am in a panic and need to be seen.”  When got there over the noon hour, there were few people in the waiting room, so I got taken back very quickly.  When the PA came in, she said, “We just need to biopsy that.  I’ll go get things ready.”  When she closed the door, I had a major, sobbing melt-down. How could this be?????  Why?????  I don’t understand!!!  I just let it all out!! 

Finally, she came back and said she would take a punch biopsy – kind of a cone-shaped specimen.  But after deadening it, she said, I’m just going to take all I can safely take right here in the office.  This was located further up on my head – kind of in the corner where the left parietal skull suture line meets the sagittal suture line.  It did not have the dime-sized slightly raised area with the center like the others had.  It was just like a tiny pea sitting there all by itself.  After removing it, she took 2 stitches, and said it would take 3-10 business days to get the results back, but remember the holidays are next week.  I stressed that as soon as the results were back, if it required further surgery, I want it IMMEDIATELY, NOT 11 DAYS LATER!  She understood my urgency.  She said to wait until she went next door to set up the appointment with the medical oncologist before we left.  She came back with that appointment as the 29th of Nov.  That was the absolute soonest I could see him.

During the conversation while removing the specimen, she knew what despair I was feeling.  She said that radiation and chemotherapy were not very effective against angiosarcomas. So that is why they always tried to get it all and then just follow up with periodic checkups. But when she came back from talking with the medical oncologist, she said that he told her there were some newer chemotherapy drugs out now that were effective against these cancers.  She also said, that not all chemo treatments were IVs, hair loss, and nausea.  Some were just in pill form and not such severe side effects.  But she could not say for sure about these new ones.  I just think she didn’t want me to be completely devastated if chemo ended up being suggested. She hinted that it might be good to try to kill whatever little cells might be left.

I would not be surprised if chemotherapy gets suggested by the medical oncologist if indeed there are some effective agents.  I had hoped that it would never lead to that, but the idea that I’ll have to spend the rest of my life with my fingers constantly roaming all over my head, looking for lurking bumps is not exactly something I want to live with.  So if this new doctor thinks I could benefit from chemo, then I’ll do it.  It gives me hope to think that there might be something further that can be done.

So she finished up, and the nurse cleaned it up – got a patch of strawberry blonde hair near the top of my head now.

As we left, we entered the waiting room at the far end with the door on the other end.  This enormous waiting room could not have been more full!!!  So here I was with my red, swollen eyes and face and half my head bearing this large in-your-face flap and my arm all wrapped up in gauze, wading through all this mass of people.  I was never so glad to get out of there!!! 

On the way home, I’m just trying to collect my thoughts and absorb it all.  My phone rang, and it was a school mate of ours that lives in LR, and we go to church and SS class with – good friends of ours. He and his wife are in town on business.  They had some time and wondered if they might stop by and say hi to us. Well…….sure!  I said we were on our way home from the doctor’s office and would be there shortly. 

I just got in the house and the PT guy came.  Oh, I forgot he was coming today.  He is such a nice guy, and I cried on his shoulder a little bit.  He felt so bad!  He said, “How about we go for a walk outside?”  Sure, I’d like that.  The wind was really blowing today, and I was pretty worn out, so we just did one trip to the end of the block and back.  By that time, our friend and his wife were here, so we cut the PT session short.  He hugged me and said it was OK if I needed to have another crying session some time.  Bless his heart, he is such a sweet Christian man.

So I sat down, caught my breath and had a nice visit with Bill and Jean.  It is amazing to me how someone we knew just appeared out of nowhere.  I know now that God had to have sent them.  Otherwise, I might have just crashed in a heap of self-pity.  By the end of our visit, my spirits were back up, and I felt like, “I can do this…..I can do this.  Whatever comes my way…..God and I have got this!”

I was able to talk to my son and my daughter on the phone later, and they always help and encourage me.

Oh, and last night I got a call from my sweet neighbor in LR who gave me lots of encouraging words and said she was keeping an eye on our place.  Bless her!!

BUT here is what I have to keep reminding myself - I've still had a lot of good news - margins clear, lymph nodes clear, CT scan normal, all wounds are healing well, my energy level is good, my pain level is minimal, my appetite is good, I've lot a little weight (which I needed!), I've formed some wonderful relationships, and GOD IS STILL GOOD!!!!!

I hate it that, for those of you who are reading this, I’ve also taken you on this roller coaster ride.  We were all so HAPPY this morning, and y’all were just so happy and praising God with me.  No sooner had I posted that all was well, when suddenly it wasn’t!  I just couldn’t come back and tell you that.  If you are sick of this roller coaster ride, you can feel free to hide me on FB, but those of you who remain, I’ll be forever grateful for your prayers……once again, I’m in need.  God bless all of you!!!  And I love you all!!!

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

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