Thursday, December 15, 2016

A Full Day Today.......

I arrived at the cancer center at 11:45 this morning.  I was taken back for vital signs.  Amazingly, my BP was only 111/60.  I thought it would be higher.  I guess I was feeling more comfortable than I thought.  (God’s peace, I assure you.)

Then we met with the nurse educator.  She went over all the things that I would expect from this treatment.  Most of that was about the medication – Taxol (paclitaxel) and the side effects I could expect.  Thankfully, with this particular medication, nausea is not common.  However, fatigue is, and it is cumulative.  In other words, the more medication I take, the more fatigued I become.  Neuropathy (numbness, tingling, and possible pain) of the fingers and toes is common.  It effects small nerves.  The good thing, however, is that when the chemo is over, most of the feeling will return – taking about 6 months to do so.  She said that sometimes little areas might remain “funny feeling.”  That is one of the things I was most worried about – buttoning shirts, playing the piano, quilting.  She said that if that got too bad, they could even adjust the dosing.  She also said that I would lose my hair.  That would occur after the 2nd or 3rd dose (nice Christmas present – NOT)  She said for most people, when they start to lose it, they just go ahead a shave or cut it.  I’ve got several cute little hats – some for warmth, some for comfort, some for looks.  I have a website where I’ve been looking at some really cute, reasonably-priced, wigs.  Maybe I’ll give myself a little Christmas present of a wig!  The hair will grow back.  Once the chemo is done, though, I’m probably facing more surgery to remove the remaining spots (which are up to 4 now), so it just remains to be seen how the hair issue will turn out.  The nurse showed me a picture of a port and talked about that.  I got from the pharmacy a topical anesthetic cream that I’ll place on the port site an hour before future infusions so that when they access the port, my skin will be numb.  I can’t remember if I posted the site explaining ports, but if you are interested here is that link. This allows them to draw blood and give IVs without sticking your arm each time – like today. 

Then we went to financial counselor.  When we told her that we (currently) had Medicare and BC/BS, she said there was no problem.  The chemo would be covered 100%.  BUT, then we told her that after the 1st of the year we were losing BC/BS and going to United Health.  Her face fell.  She said there would most likely be co-pays or have to pick up some of the cost.  We told her that we understood from a friend that it was not the run-of-the-mill United plan – that they had developed a plan just for this PEEHIP group.  She then said that perhaps that would really be in our favor, but she would have to call them and let us know what they would cover and what the cost would be to us. PRAY, PRAY, PRAY their plan is much in our favor here!!!

After the educator finished with me, I went to the lab for them to draw blood.  The lab could not draw blood from a hep lock that the chemo nurse would insert.   So I let her use the left arm, because that vein in the bend of my arm was sticking up like a rope!  She got the blood with no problem!

Then I entered the infusion area.  HUGE – it was huge!  It covered the whole end of the building – with big windows all around.  It was divided into sections.  In my section, there was only one man and his wife, so I took a chair of choice.  Guy chose to stay in the waiting area.  He would have come back with me if I wanted, but it was OK. I knew it would probably give him the “jeebs.”  After I sat down, Dr. Powers came over to me.  He pulled out a rolling stool and rolled over to me.  He got within about 18” from my face and just looked at me.  I thought he was going to cry – his eyes teared up.  With the most kind, compassionate voice, he quietly said, “This thing is just raging, isn’t it?  We just need to get this with chemo. Dr. Mammen and I agreed this thing is trying to take over.  We need to kill it with chemo.”  I showed him the spots that had come up since the surgery.  He patted my legs and wished me well.  As the nurse was getting the IV set up, he came back with his iPhone and took some close up pictures of the spots on my head, so he would have some baseline pictures.  I told him I had taken pictures of all of them, too.  Then the nurse came to get started with a warm pillow and blanket.  She said that Dr. Powers was just the kindest man, and that he was *very* good at what he did!  Once again – a God thing that I got this man!  I just love him!

Erica started my IV – got right in, thank you, Jesus.  She said she would start with 50 mg of Benadryl, followed by Decadron (don’t remember how much), then she would wait 30 minutes before starting the Taxol.  I was just chatting away with her, and shortly, as she began to push the Benadryl, my eyes began to swim and my speech started to slow, and I found it hard to concentrate.  WOW!  That was strong stuff!!  I’ve taken 25 mg of Benadryl by mouth often during allergy seasons before going to bed, but 50 mg IV is a real TRIP!  She was not surprised.  She explained it is given in case someone might be allergic to the chemo.  The Decadron is a steroid and anti-inflammatory.  Benadryl, as an antihistamine usually makes you sleepy.  A steroid usually wires you up!  At that time the Benadryl was the most powerful.  Now that the Benadryl is starting to wear off at bedtime, I’m hoping the steroid does not take over.  We’ll see how much sleep I get tonight.

After the Taxol began, I really did not see any difference.  It burned a little bit at the site, but that eased.  I tried to listen to an Audible book I had on my iPhone, but I was just a little too loopy to concentrate.  Then all of a sudden I got restless leg syndrome – only it was restless BODY syndrome.  Yikes!  I was in constant motion!! I said something to the nurse, and she said that was a typical side effect of large doses of Benadryl.  She told me that they might reduce the dosage of that next week.  I’m supposed to mention it to whoever gives it at that time.  Whew!  That was miserable!  I finally had to go to the bathroom, and she helped over to it.  Thankfully, it was not far away.  But after I came back, the restlessness went away.  I should have gone to the BR earlier!!

After it was over, the nurse walked me to the waiting room, and Guy walked me to the car.  When I got home, I ate a little bowl of vegetable soup that Guy had made, because I was starving with no lunch, and it was after 3:00.  Then I crashed in my recliner.  I was able to get a little nap.  Guy fixed supper.  I had put some country pork ribs in the crock pot before we left, so he just had to fix some vegetables to go with it.  It looked and tasted so good!!  As far as the rest of the evening, I can’t really tell that I had anything today other than that pesky Benadryl hangover!!

In the morning, I have to be at KU Med West surgi-center to get my port.  I arrive at 9:45, get the port inserted under general anesthesia at 10:45, and recover for an hour.  I had read that they give you some heavy medication so you don’t know much of what is going on.  I told the lady that called this morning with the instructions that I didn’t want to know ANYHTING that was going on!  She laughed and assured me that I would be OUT.  Thank you, Jesus!!

Never a dull moment in our lives here……

As a side note, early this morning, I got a newsfeed on my phone that a 37-yr old lady had been murdered in Birmingham.  

She lived in Highland Lakes.  That is the neighborhood that Mark and Fernanda lived in for several years.  I wondered at the time if Mark knew that family.  It said that she had 2 children 13 and under.  The dad had died last year.  The 13-yr old came home from school yesterday and found her.  I thought, how horrific!  Then tonight, for most of the evening, Chris has been sitting down here on the couch talking to me about this.  After Mark and Fernanda divorced, Fernanda bought a house in Chelsea, and the boys lived there with her.  This family lived in the same neighborhood, and this 13- year old boy (Chandler) was Chris’ best friend.  They rode bikes together, and they had a class together in school. There is a younger sister also, Kate.  Chris said after his dad died, Chandler had a really hard time.  Apparently, they had been separated, and he preferred living with his dad.  Chris said Chandler would tell him that he didn’t like going to his mom’s because of the boyfriend that was there.  After the dad died, she and the children moved from Chelsea to Highland Lakes.  Chris knew right where they lived; he had a friend that lived next door and had ridden bikes in the area when they lived there.  Chris was on Chandler’s FB page all evening.  It was hard for him to believe.  I’m glad he felt like talking about it.  He showed me a picture of Chandler and his grandmother.  I hope that these children get the help they need.  Chandler is going to need some serious counseling for some time to come. Highland Lakes, for those that are not familiar with the neighborhood, is just south of Birmingham and is a large, VERY nice, high-end, gated community with only two entrances, both of which has a guard.  As a visitor, you have to stop and tell the guard the specific home you are going to and your name which they write down.  As they open the gate, you must pause so they can write down your tag.  Just pray for these children, Chandler and Kate, and for those into whose custody they will be going.

I’m hoping tomorrow will go well, and then I can have a day or two off from any activities.  But so far, so good….

As always, I’m in His hands……(and they have not dropped me yet!)

P.S.  A big prayer was answered last night on Guy’s behalf!  He was having an issue that was causing a great deal of pain, but this morning, after he slept, he said it was like a “light just switched”, and the pain was gone this morning!!  Praise God!!!

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