Tuesday, July 31, 2018

Oh, that NOSE!!!

Last night I was sitting here in my recliner, and my nose was plugged tighter than a drum – so tight I couldn’t even swallow!  Then it would open up, and I could breathe.  Then plug again.  All for no good reason.  Well, I guess there was a reason.  About 3 weeks ago, I had a little bout of allergy – just enough to mess up my sinuses. Instead of running and blowing as I usually do, this dry-everything-up Mekinist turned whatever was in my sinuses to glue. (And as a little bonus, it stressed me just enough to cause a gigantic fever blister to cover the entire inside of my right nostril!)  At first it didn’t plug everything off, so to keep that from happening, I started taking Mucinex, which helped a little.  Then Mucinex DM to help with the hacking cough, which, incidentally (or NOT so incidentally), did not help my cracked rib. But it did help loosen the sinuses just a tiny bit.  Then I went a day or two without to see if maybe the Mucinex was making the whole thing worse.  NOT! That’s when I got into this completely plugged situation.

Guy had been pestering me to use his Sinex spray.  Now, I am NOT a nose spray user – except for saline.  I don’t want that rebound reaction they all give you.  He told me that he never got any rebound from using this one.  He got it out and sat it next to me.  I kept staring at it, thinking I just might have to give in this time and use it if I want any sleep tonight at all.  Trying to mouth breathe with an already dry mouth is just impossible. Sometimes I awake, and my mouth is so dry I wonder if the tip of my tongue just fell off.  I finally decided to give it a try.  I was concerned how the side with the fever blister would react.  I’ve had fever blisters in my nose before, but never anything like this one!  I can’t imagine how long it will take to heal this one while on this medication.  Any little mole hill becomes a mountain on this med.  I got bitten, I think by a mosquito, on the back of my left hand, and the whole back of my hand and half way up my arm is covered with an itchy rash and swollen. 


But I was desperate enough to take a chance.  Within less than a minute, I could breathe.  It burned a little, but I was breathing through my nose again.  I sat there and kept waiting for it to close again.  It said that it lasts 12 hours.  I was skeptical, but by the time I got in bed, I could still breathe through both sides. I lay flat in the bed…..still open! I had to get up a couple times, but both sides were open all night!!  Woo hoo!!!

About 5:00 I woke up and my mouth was stuck shut.  I reached for my water (has a lid and a straw).  Trying to get the straw in my mouth, it slipped out of my hand, hit the edge of the waste basket, and the lid came off as the rest of it hit the floor.  OK, everyone’s awake now!!  I had to get up and clean up the mess and get more water.  By that time, I was wide awake.  But I didn’t get up.  I turned on Rick and Bubba back in B’ham, through my phone and propped up in bed. (nose not completely open).  Just after Guy put the garage door down, headed to coffee, the power went off. Then it was too quiet to go back to sleep.  At some point I did doze off, because the next thing I knew, Guy opened the bedroom door and Annie was in my face.  

I got the results on my biopsy.  As we all knew it would be, it was angiosarcoma.  He sent my tissue off for genetic studies that take weeks to complete.  I’m praying for quick results to show up another mutation marker and corresponding medication.  No guarantees, I know, but I got a miracle once, so it is possible again.  In the mean time I wait it out on this Mekinist and pray.  

I got my stitches from the biopsy out Monday.  My cheek really looks pretty good.  I think the leading edge may even be receding just a tiny bit. 
(That upper mark on my cheek bone is from the tape that was used after the biopsy, not part of the cancer.)
 I don’t know what is going on with my forehead. It had completely cleared and now is all red, scaly, and scabby and itchy.  

I suspect another mutation has taken over that area – again!  It’s a BEAST!!

I’m so concerned about Abby, Mark’s 11 year old golden retriever. 

 We’ve had her for about a month now.  Mark has been on a job assignment in Canada, and Amy is with him.  The boys are with their mother the month of July.  She’s been sick for a little over a week.  She just lays around, sleeping, wouldn’t eat.  Looked so sad in her eyes.  We finally took her to the vet Saturday, and I honestly thought she would die on the way.  She was breathing so heavily.  Mark said to use our judgement, but he didn’t have a lot of money to be able to spend on her if she was going to have to be put down in the end.  That’s what happened with Heidi – they spent a bunch of diagnostic money on her to find out she had a large tumor and had to be put down. When we got there, she seemed to rally a little – tech said that was the adrenalin of being in the office. Anyway, her lungs and heart sounded good, so we chose to have the blood work done.  Her liver and kidney function studies were good.  They said her white count was high, so she had an infection somewhere.  They gave her nausea medication, offered her a special canned dogfood, which she took, and prescribed an antibiotic.  So we took her home.  Each day she has made slight improvement, but doesn’t seem to be snapping out of it quickly. 

She did eat better today.  She ate ½ a can if I spoon-fed her.  She is pottying, but not pooping.  She followed me more in the house today than she has. She takes her pill easily, wrapped in cheese.  In fact, she comes to me when I start rattling the cheese paper.  J  But I can tell she just doesn’t feel good.  When I was petting her this morning, she kind a flinched a little occasionally when I petted her head.  That’s definitely not like her.  I feel so bad for her…….

It was nice having Jeannine and the girls here for a good bit this summer. I should have done this at the beginning of the summer, but didn’t think of it until near the end.  I took them to get bicycles they could keep here in our shed when they went home.  They picked them out (with a little help), and they had a blast riding with the neighbors, getting things for us from the store, and riding to the water park. They are sitting in front of the store their Great Grandfather owned from 1940s-1960s! 

They (and their 3 dogs) went home last Saturday. It won’t be long until school starts now.  They sure start earlier than we did when we were in school.  I didn’t start until after Labor Day.  Oh, well, I guess lots of things have changed over the years…….some good…..some not so good…..

And as always……..I’m in His hands……

Wednesday, July 18, 2018

Some days you just can’t find any good news.

Some days you just can’t find any good news.  Well, that’s not entirely true.  Today’s good news is that it rained nearly 3 inches.  We have been in desperate need of rain.  It seems that all the rains have either split when they get to our area or they just fizzle out.  FINALLY, we got a good long rain in the night – lots of lightning and thunder, too, so not a lot of sleep was had.  Shortly after I got up, my phone gave me an alert for a flash flood warning here.  I couldn’t believe my eyes.  For weeks we’ve been in a terrible drought, and all of a sudden there is a warning for a flash flood????  Guy said he drove out to the farm, and it got about 2 inches with puddles standing and the Sand Creek once again flowing.  Grow, pasture grass, grow!!!!

A week ago Monday, I developed a fairly large spot of blisters on my back, half way between the lower line of my bra and waist, pretty much in the middle of my right side.  

I thought it was probably a chigger bite, because I’ve had my share of those this summer.  This Mekinest (cancer drug) I’m taking does not like bug bites. It causes a rash to develop with blister-looking areas around it.  I have one area that started behind my left knee, and the rash covers half my lower leg – 

and  another area in the middle of my right thight - this only covers an area about the size of a 50-cent piece. My pharmacist said that 87% of the people who take Mekinist have skin issues.  So I haven’t been all that concerned about odd rashes that occur here and there.  But this area on my back just didn’t act quite like the other areas. Plus, that whole right side mid-section kind of ached now and then.  The only thing I could blame on the discomfort was shingles.  I certainly didn’t want to think something was wrong with my liver or kidney.  So today I decided to just go have it checked out.  Sure enough, it was shingles.  Back in 2012, I had a really bad case of shingles, and it was *extremely* painful.  I should have taken the vaccine because I never wanted to undergo that event again.  But I didn’t. I guess I figured if I had them once, I was not likely to get them again.  Dr. Jackson said it was because I was immunocompromised.  Well, phooey!  I know that when you have shingles, you need to get to the doctor right away to get on the antiviral drug, I knew, also, that a whole week had passed since mine started.  But thankfully, it had not spread and seemed to be a mild case.  I was prescribed Valcyclovir 1 Gm three times a day.  So far, I haven’t had to take anything for the discomfort.  Unfortunately, shingles take about 2-4 weeks to get rid of.

Another issue I’ve been dealing with is that with all the dog dander around, my allergies have been acting up.  I sneeze occasionally, but instead of my nose running, this Mekinist has thickened all the mucous in my sinuses, and I can’t get it up, down, or out! It feels like and sounds like I’m talking over a wad of SNOT at the back of my throat!!  UGH!!  I’ve been taking Muscinex which is supposed to thin your secretions.  Dr. Jackson said to continue that but to drink, drink, DRINK!!!!!  UGH!! I never seem to be able to get enough water down.

Well, all that news didn't particularly throw me off track.  I had taken some pictures to send to Dr. Powers. A week ago, I sent him pictures wondering about all these rashes.  My face and head had not particularly changed much over the last few weeks……..UNTIL today.

Here is what it has been looking like.  

I just figured I’d probably always have this little decolorization – like a scar.  I figured for how that cheek had looked at one time, I could certainly live with what it looks like now – and feel blessed!  

Then here is what I sent to him today because of the darkening color and the little nodule that has come up.  

I’ve noticed that for about a week, when I would wash my face, that nodule area was tender.

He answered me pretty quickly today, and this is what he said, 
I am concerned about that cheek area. You need to have that biopsied in the next week or so, if not getting better.
This could be a sign of resistance to the Mekinist, and if the Mekinist is starting to cause worsening symptoms otherwise, it may be time to start looking for other things anyway. 
Keep us informed by early next week. Do you have a derm close to home that could biopsy that cheek nodule for us?”

*SIGH* He really knows how to take the wind out of my sails. My cheek has kind of looked like this before, but then, faded. So, I’m praying desperately that nothing is going on there.  I’ve been praying that this Mekinist would kill every single cancer cell in my body BEOFRE one of those cells has a chance to mutate. The FB angiosarcoma site calls this cancer “the beast!”  It truly is. It’s easy to get your hopes up when all seems to be going well.  I have to remind myself that, short of a real-honest-to-goodness-miracle, I will likely NOT beat this incurable disease.  I’m reminded of a video that we used to show our nursing students years ago. The name of the video was Peige. (not sure of that spelling) It was a video journal of this lady named Peige and her husband and her journey through her cancer.  She had advanced ovarian cancer.  About all I remember was her sitting on the couch with her husband, and she would say, “I want a miracle……”  Him, softly, “But you ain’t gonna to get a miracle.” Her, “But I wanta miracle!” Him, “I know…..”  It was very sad and hard to watch clear back then.  I’m not sure I could watch it today.

So that brings you up-to-date.  Wish I had more good news.  I don’t see Dr. Powers until Aug. 21 when my next scan is due. I suppose if I have to get this cheek biopsied, that may change plans pretty drastically.  Dr. Powers pulled one miracle out of his bag (of course, I know that was a God-thing!)…….I don’t know if he’s got another one in there…… Just pray He is not done with me yet…..

And as always…..I’m in His hands…..