Saturday, April 15, 2017

Trying to FINALLY catch up.......

I’ve been thinking for days about trying to catch this blog up.  So much time has passed, I’ve lost lots of details of documentation.  That really frustrates me.  But, I have to be in a certain frame of mind to write, and my mind for most of March and half of April just went off somewhere, laid down, and refused to create anything except survival.  I’ll just do my best to catch up some of the happenings and hopefully some of the details will come to mind.

When I last posted, we were heading to Hutchinson with fires starting up in the sandhills between where we live and 30 miles south to Hutch.  You probably became aware of the terrible tragedy that occurred as a result of all that.  It made national news.  The winds were so severe and the grass so dry, the fire got away from the fighters that came from all over the state and surrounding states – as far away as N. Dakota.  It burned a record amount of Reno County (where Hutch is located).  I believe it destroyed 11 homes, and damaged dozens.  It destroyed one home on the golf course that our family belonged to when we lived there, and where I played many golf rounds with my dad.  People over a very large area had to quickly evacuate, leaving everything, and many lost animals – cattle, horses, pets.  It was terribly devastating to the whole area.  Thankfully, it never got into the actual city.  Southwest Kansas was hit even harder.  There, there was a HUGE cattle ranch that was all but destroyed by fire.  This ranch that raised angus beef for generations lost hundreds of cattle!!!  It was a very sad and tough time for Kansas.

On now to happier things…..

Shortly after our house in Alabama closed, we met with our banker here, March 6th, a Monday, to sign the loan for the new home.  That was almost too easy!  On Wednesday, the 8th, we met with the Title Insurance Co to sign the papers on the new house.  That was easy, too!  What is interesting is that in Alabama, when you sign papers to buy a house through a realtor, you and the buyer (or seller) cannot be in the same room to sign – you have to be in separate rooms to sign all those papers.  You don’t even see the other people until it’s all over.  Here, we just all sat in this little room, signing and visiting!  And we left with the keys and garage door opener!  Gotta love these small towns!!!

The next morning the movers arrived shortly after 8 and began to load our things. We had managed to get most of what we needed them to take besides furniture, boxed up.  A lot of the kitchen remained – we just couldn’t get it done.  After the 1st load was ready, I went to the new house and just stayed there.  I sat and pointed – put it there, put it here, etc.  That’s all I could do, and that wore me out!!  By the end of the afternoon, Mark and the boys arrived with our master bedroom furniture and a few other things he had stored for us.  He got here before the movers left so they all worked together to unload the UHaul. Mark and the boys got our bed all set up.  It’s pretty easy to move because it’s a Select Comfort bed, so there’s no big bulky mattress to move.  You just have to remember what goes where when you put it back together again.  So, by bedtime, we all had a bed to sleep in.  The movers came back the next day to get what was left that could be gotten – mostly the boxes up in the attic of the old house.  I had hoped that those would be spread out in the garage of the new house – single layer so we didn’t have the same problem here that we had there.  But, NO, they got stacked along each side of the garage, so we could get one vehicle in the garage, so here we are, unable to easily get to the boxes to see what is in them.  I finally told Guy to bring in one box a day for me to sit and go through.  So, I guess that is the way we’ll attack that part of it.  We’ll probably be a year going through those.  Haven’t felt like going through one box yet.

Mark and the boys went home Sunday, but they helped us get a lot of the necessary things in, unpacked a put away.  Saturday Jeannine and her girls arrived.  She stayed through Thursday, spending most of her spring break to help us.  She worked her tail off!!!!  She and the girls packed up what was left of the kitchen at the old house and set up all my kitchen at the new house.  Sofia (9) put most of my panty together.  What a blessing that all was!!!  You know, once your kitchen is together, you feel like the rest of your house is in place.  If it had not been for our kids, this never could have happened.  It simply would have not been physically possible.

Here are some pictures of the house. These were taken before we moved in.  Will have to get some more up to date ones later.

It has a very open concept.  This was taken standing in the living room, just inside the front door.

The next week, I got another sinus infection.  BUMMER!  Even though I didn’t do all that much in the move, I know the stress of it just depleted what little immune system I had.  I was put back on another antibiotic.  That was my week off chemo – that I couldn’t even enjoy.  I HAD to get well by the next week because that was when I was due to check back with all three of my KUMC doctors and have all the tests run.  I just tried to rest and get well – and not let any of the housework needing to be done bother me.  Easier said than done.  I had to get to the place where, as long as it is livable (which it was), it was OK.

When it came time to go to KUMC, I was up to making the trip.  We left here Tuesday, because I had to be at the clinic early Wednesday morning to get an MRI of my head.  Before the procedure, I was asked all kinds of questions.  One question was, “Did I have any clips put in my head anywhere during any of the surgeries?”  Well, not that I knew of.  I did show him my flap and told him they tied in one vessel in front of my ear and one under my chin.  He was able to go on the computer and somehow found that “clips” were used in those tie-ins.  He had to find the parts number of those specific clips, call the manufacturer, and ask if they were magnets/metal.  Wow!  Was he thorough!!!  He had to have it emailed to him as written verification that they were NOT metal before he would go on with the procedure.  That caused about a 45-minute delay.  He kept apologizing for taking so long, but I told him it was no problem – I appreciated that he was so thorough in his investigation.  It is amazing to me what he could find out!

Later, in the morning, I had my appointment with Dr. Powers, my oncologist.  Those two hours, between the MRI of my head, and the appointment with him were my most harrowing hours.  I was to find out the results of the MRI at that appointment.  When he walked in, he just kind of casually started talking about what he planned for me in the future – that he thought because of the aggressiveness of this kind of cancer, I should continue with three (NOT TWO), more months of chemo at a reduced dosage to make sure we don’t stop too soon.  Meanwhile, I’m sitting there wondering what the results of that MRI was!!!!!!  I didn’t want to appear anxious or ask outright, but that obviously didn’t seem to be on his mind.  I guess I really knew in my heart that the chemo was not going to stop, but THREE MORE MONTHS!!!  So much going through my mind……. FINALLY, he said the MRI results were not available yet.  SIGH!!!  He said he would call me as soon as he got them.  I told him how the neuropathy really bothered me.  He asked if my toe nails were discoloring.  NO, but he proceeded to take off my shoe and sock to look.  Then put them back on.  So, I took it from that that it could get a lot worse.  I still just love that man.  He is so caring and compassionate.  He said after the 3 more months of reduced dosage chemo, if no spots appeared, he would bring me back in for a full body pet scan, and if that was OK, he’d probably take me off chemo for 3 months and see what happened. It’s very possible I’d have to go another 3 months of chemo after that.  I took it that may not be something that I’ll ever get completely away from.  It will just all depend on what happens when I’m off the chemo for a length of time – whether it comes back or not.  He also said that after this three-month session, he wants me to visit with the radiologist just to EVALUATE whether radiation therapy might be considered.  That was a bit of a blow to me, but he assured me that it was just to see if the possibility of it might be needed.  It might very well NOT be, but he wants to cover all the bases and hit this nasty thing with all that is available.  I appreciate his aggressiveness in treating me….I really do, but I just want this to all end!!!!!!

So, we left the office to go eat lunch, and right in the middle of lunch he called me.  “There is good news.  The MRI showed no suspicious cells anywhere on my head – not in the soft tissue areas, around the flap, or in any of the surgical areas.”  NO CANCER ON MY HEAD!!!  I could hardly believe my ears!!!  I thanked him so much and hung up.  All I could do was just sit there and say, “Thank you, Jesus!  Thank you, Jesus! Thank you, Jesus!!!!!!”  Talk about one happy human being!!!!

That afternoon, I saw Dr. Przylecki, my plastic surgeon.  That was pretty ho hum.  He took a look at all the sites, said they were doing fine, and asked his nurse to take pictures.  He asked to see me in another 3 months.  I thought maybe he would do something to help with the thickened area of the scar on my arm.  But I have good range of motion of my wrist and hand, so I guess over time, as I continue to massage it, it may loosen up some.  

I don’t know….I guess that is the least of my concerns in the big scheme of things.  Anyway, he was pleased with all his work and the healing.  The flap continues to do well.

The next morning, it was time to go to have my chest CT scan.  That was in the same building as Dr. Mammen, the cancer surgeon.  They were able to access my port there to give the dye, so I didn’t have to have an extra IV started.  That’s the dye they give that creates the warm feeling all over your body and feels for the world like you have wet your pants!  But it doesn’t last long.  We had some time to kill until my appointment with Dr. Mammen.  That appointment was at 1:20.  We had packed up our car so we could just leave for home after that appointment.  When we met with him, he looked at the computer for the results of the scan.  He turned towards me, chuckling, and said, “Do you have pneumonia???”  I said I didn’t think so – didn’t feel like I did.  He said that the scan showed I had a little pneumonia.  Well, what could I say?  I supposed that sinus infection could have caused it, but I sure hadn’t had any symptoms.  Anyway, that was just incidental; the important thing was there was no sign of cancer in my chest!!  Another great report!  Come back in three months, and out we went, headed for home.  Happy, happy, happy!!!

The next Tuesday I met with Dr. Haenel, the Hutch oncologist to begin my 3-more-months of chemo.  She was thrilled at the test results and had already talked with Dr. Powers about the plan for the reduced dosage. 

That first week back on chemo hit me hard for some reason.  Once the steroid wore off on Thursday, I had ZERO energy.  From Thursday through Sunday, I mostly just sat in my recliner.  I could be up for about 15 minutes, then have to rest for 30.  I did manage to go to Sunday school and church.  I was glad I did, because the message on suffering was just for me!  I think I may have overdone on Wednesday, and that just knocked me out for the rest of the week.  When you feel better on those steroids, it is SO HARD to not overdo!!  I just have to FORCE myself to rest on those days.  If not, I pay for it.

Now this week, I seem to have done better – at least for now.  I didn’t rest a lot Wednesday, but Thursday I did pretty well.  I REALLY hope it lasts.  The pianist at our church has been wanting me to play my keyboard with her for the Easter service this Sunday.  Wednesday night we practiced at the church, and it went well.  I thought she just wanted me to play offertory with her, but she wanted me to play for the whole service.  I told her it is a day-to-day thing with me, and I might be able to play the whole thing, or none at all.  Or I might be able to do some of the songs.  We would have to just play it by ear.  I REALLY want to be able to do this, so I just PRAY I’ll be up for it.  Not for ME, but just to be able to add to the service.  Most of the songs are all the familiar Easter songs, so I’m not worried about being able to play them.  I just want my eyes to be able to work and have the strength to do it.  There is one song that I had never heard of from a book that they sing every Easter as tradition, but it was not hard.  Mostly I’ll be using an organ setting for the songs with some “holy voices” variation in one of the songs.  Should be fun – if I’m feeling up to it.

A couple weeks ago, Guy had a physical by our primary care physician.  I thought he would assign him a cardiologist, but for now I guess he is going to manage his A-fib.  For now, he seems to be doing OK with it, but the big bug-a-boo was that he’s been diagnosed with type 2 diabetes.  Just what he needed!  That’s the non-insulin dependent type, so he is taking a pill.  We met with the diabetic educator on the 7th.  Guy is supposed to be charting his blood sugars and following this “diet.”  If you look up “non-compliance” in the dictionary, you’ll find Guy’s picture!  My first thought was that now I have to not only have to deal with all this cancer stuff, but also deal with his diet.  It wasn’t long until I had to realize that he will have to take responsibility for his diet and diabetes IF he decides to do so.  That is one stress I can’t take on.  He’ll either deal with it, or he won’t.  The educator gave us both our own meters.  My blood sugar is running high, but it is due to the steroids.  I haven’t checked mine a lot because, not having a diagnosis that requires me to check my blood sugars, the insurance won’t pay for the expensive strips.  It does pay for Guy’s with the diabetes diagnosis.

I had been doing some reading on cancer and sugar and got all excited about that until I talked with my nurse.  She said that your body needs glucose for energy, and cancer treatment time was not the time to worry about some special diet – just don’t overdo the sugar thing, but don’t even think about trying to do anything that would cause me to lose weight.  OK, so that’s one less thing to worry about.

OK, let’s just get real now…..that catches up the “news”…..the last couple of week have been rough.  There’s just no other way to describe it.  After the two weeks off and the good news from KUMC, I came home feeling pretty good.  I was excited about Dr. Powers saying that he hoped the reduced dosage would help the neuropathy progression to slow down, and perhaps it would allow me to live just a little more normal day-to-day life.  Well, that first week back on chemo certainly did not turn out that way.  And I got very discouraged!

It is amazing to me, though, that when you are at your lowest, God sends someone to you.  On that Saturday, when I could barely wiggle, Guy’s cousin and his wife came to visit.  They are just a swell coupe that lives out in the country about 30 mins from here.  Sharon is such a sweet, soft spoken lady.  Even though I was so tired that night, their visit really lifted my spirits.  It helped to get my mind off of me, and at the end of the evening, I was feeling blessed.

Then Tuesday when I went to my infusion, God gave me my favorite nurse to give my chemo.  She spent a lot of time sitting and talking with me.  I talked to her about my discouragement and terrible lack of energy and tiredness.  She was kind, but very direct with me.  Essentially, she told me this wasn’t going to get better until I was done with this chemo.  This fatigue is cumulative, and she hated to be the “mean nurse”, but she didn’t want me to have high expectations and be disappointed when they didn’t come through.  I just . had . to . get . through . this!!  As you can imagine, it was not what I wanted to hear, but I told her I appreciated her honesty.  I can deal with reality – can’t deal with the other!

So now I’m trying to deal with reality – and I do better with that at times and not so good at other times.  When I break out in a cold sweat just trying to fix a bowl of oatmeal and have to sit with my head down for several minutes, or it takes me 30 minutes just to put my socks, pants, and shoes on, or I get a bowl of cereal eaten then have to sleep the rest of the morning.  I’m so very tired of being so very tired!!!!!  I wonder just how I’m going to make it TWO . MORE . MONTHS????  Where will the energy come from to make it???  Well, there are no real answers to that.  What I have to concentrate on the most is not stressing over things I have no control over, trusting that God will somehow carry me through the rest of this time, and trying to maintain peace of mind. Let’s see…..perhaps I can make a list of specific things I can do….
1.    Read the Word more
2.    Listen to Collingsworth Family songs
3.    Pray – praise, count blessings
4.    Start up your “grateful journal” again
5.    Do what I can do
6.    Let go of what I can’t do
7.    Rest when I need to rest
8.    Go to bed earlier
9.    Watch Mark Lowry youtube videos (you can’t watch those and stay on the bottom)
10.Snuggle with my little Annie

I did get a new Easter haircut.  (and steroid face)

My hair had started to grow out already – even though chemo was ongoing.  It was about ¾” long, so I told Guy to just shave it all off.  While I’m still getting chemo, I want to be able to easily observe every inch of my scalp.  I don’t want any hair clouding anything that might crop up.  He took pictures of the places that are left, so if there is any change, I'll have a baseline to compare to.

Top of my head - 3rd surgery. That scab just seems to stay there.

Below is a picture of the flap (you can even see the blood vessel running down the center of it).  You can see what remains of lesion on the right near the bottom of the flap, but can barely see the one on the right about half way up.  At any rate, the MRI showed no suspicious cells in any of those areas!!

I guess you could call it my summer cut.  Am I paranoid a little???  Probably…..

I want y’all to know that I NEVER take any of YOU for granted.  You, my prayer warriors, mean more than I could ever express!!  If it were not for you and your prayers, I would have been gone long ago!!  I know each of you have your lives and your own needs, but you never fail to encourage me and come through with your prayers, and for that I will be forever grateful!!!  I pray God’s blessings on each of you, and may this Easter season bless each one in a special way.

As always…..I remain in His hands…..


No comments:

Post a Comment