Saturday, January 27, 2018

The Good, Bad, and the Ugly.....

I know there are those who follow my blog and are not on facebook, so to those, I apologize that I’ve been so long in updating here.  There have been lots of ups and down since I last wrote.  If you get into this and get bored, please scroll to near the bottom, where I ask for specific prayer requests.  I’ll also put some pictures at the very very end, for those who wish to see or not see. (I have no idea where the white background comes from about halfway through here - can't seem to fix it!)

We had a really nice Christmas.  Our daughter had not planned to come home for Christmas.  She had just started a new job and had no time off.  But when she heard what Dr. Powers had said about needing to enjoy this holiday, she decided to just take the time off without pay and come home.  Maya (12) was sick with the flu, so in order not to expose me to anything, she left both girls with their dad.  Mark’s oldest, Dylan (16) was involved in a soccer tournament in Florida, and Chris (14) went to his mom’s for Christmas.  Mark and Amy came, and we had a “very adult” Christmas.  We missed the grandkids, but we all really enjoyed being together and visiting and laughing.

Dec. 28 I went in for labs and to get some fluid.  My blood counts were down a good bit, so I had to go in for the next 5 days to get a shot that would kick start my bone marrow to put out neutrophils.  A side effect was bone pain.  I got that the first night – in my lower back and hips, but got through the rest of the shots with a heating pad.  By Jan. 11, Thursday, I was ready for my 3rd chemo treatment.  The treatments themselves are not bad.  The day after I had to go back in for a Neulasta shot.  The previous 5 shots each only lasted 24 hours.  Neulasta lasts 2 weeks and helps to stimulate neutrophils (the infection fighting white cells). 

Saturday, my sister-in-law, Karen, my niece, Carla, and her husband, Brian, came from Bartlesville, OK to visit.  Thankfully, I was feeling good, and we had the nicest visit!  It really lifted my spirits.  One of the things Karen really felt impressed was that I should be anointed with oil and prayed for divine healing.  I said that I had actually been thinking about that.  I decided to ask my pastor if he did that, and he said he did.

In the meantime, Sunday, I started running a fever and the back of my head, where I had had my surgery hurt like crazy, causing me to have to take some pain medication. Monday, I had a terrible weak spell, so I went to the infusion center to get fluids and asked about getting on a schedule to get fluids each week.  The Dr. said the pain and fevers were caused by the Neulasta.  It’s called neutropenic fever and is common.

After going home, the infusion nurse called and told me due to the fevers, I should go into the ER to be checked thoroughly for any infection going on, so we did.  All my tests turned out to show no infection, but the dr. gave the option of going into the hospital or going home.  Since I was infection free, even with the fevers, I decided to go home.  Chilled all night long – miserable.

Thursday it was back to the lab.  After we got home, the nurse called and told me that all my counts had bottomed out, and I could no longer stay out of the hospital.  She said she would have everything arranged for me as soon as I could get there.  I would be put on reverse isolation, since the flu was lurking around every corner. Everyone that came into my room for any reason had to wear a mask and gloves – even Guy.  I was still having the fevers, but the pain in my head had let up a bit.  I was a bit concerned about going into this small hospital, but I didn’t really have a choice.  So, I was admitted that evening.  Lots of blood work was drawn, CBC, blood cultures, etc.  My port was accessed for IV antibiotics prophylactically.  I readily took the Tylenol to keep my fever in check. As a side note, here, the admitting nurse said for some reason I looked familiar.  As it turned out, I had her in nursing school 30 years earlier!  And I had also taught her sister.  What a small world!

Friday morning, the 19th, I had a real weak spell, and my BP dropped to 88/33 and pulse 44.  That sent everyone scurrying to get IV fluids going.  I was given an EKG (normal), and put on continuous heart monitoring. I was due to have an ECHO of my heart done on that day to check the pumping action of my heart, since Adriamycin can cause heart damage. It’s a rare side effect.  The initial result of that was unremarkable.  My hemoglobin had dropped to 6.2, (normal 12-14) so the dr. ordered two units of blood.  I didn’t get that until late in the afternoon, because it had to be irradiated and come from Wichita.  It wasn’t long after I got the blood that I began to feel better – stronger. My BP had come up to 102/53.  Everybody celebrated!  But temp spiked to 101.5 – miserable again, until Tylenol took it down.

That night I slept nearly 4 hours. I had to change my gown 3 times due to temp up and then down (sweaty!). By now, my BP and pulse were beginning to stabilize.  When it was so low, it was also irregular and throwing a PVC here and there. Another side note – if you need rest, do not come into the hospital!!  VS every 4 hours around the clock, blood drawn early every morning, weight taken every morning about 5, etc.

Saturday my pastor had made arrangements to bring Bruce, my SS teacher, an elder in the church and anoint me with oil for healing at 2:00 pm.  James 5:14 says Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord.”  I had groups of people and individuals in several states praying at same time.  We had a glorious time of prayer! 

It was shortly after that time that my blood counts began to turn around and head upward.  My 1st white count was 0.1 and the next was 0.2.  After prayer, the next morning my WBC was 1000!!!  Still no infections had shown up.

Sunday, had more blood drawn, and my WBC was 2000.  My hgb was up to 8.4.  I sat in the chair some.  Temp is low grade fever now.  VS have stabilized.  In the afternoon, 5 dear friends of old came to visit me from my old home church, 1st Nazarene in Hutchinson.  Johnny Spellman, now a minister, anointed me with oil again, and we prayed heaven down into that room.  I don’t know when I have cried so much and laughed so much, all in the same day.

By now the back of my head had started draining a bit and forming quite a scab.  It was becoming uncomfortable.  I took a warm wash cloth to try to clean it up a bit.  I couldn’t see back there to know what was going on.  In the night I had to take a pain pill since my head hurt so bad.  I had shown it to 3 different doctors, and no one really thought to much about it.  The hospitalist ordered me some moisturizing cream from the pharmacy because she said it was very dry.

Monday, my WBC was 3400 and hgb 8.8.  My platelets were 45 (up from 13).  Dr. Page came by to see me since Tuesdays are his day in the McPherson office.  I asked him if I was going to have to take that Neulasta after every treatment.  He said I would.  Otherwise, we would have to wait for my own bone marrow to kick into gear, and my WBC would remain low for a longer period of time.  He said that I might not have to deal with these fevers every time.  Boy, I hope not!!!!  That day they discontinued my IV antibiotics and removed my continuous heart monitoring.    I began to get up more in my room, sitting in the chair, and doing some leg exercises.

Tuesday, my WBC was 3500, hgb 9.4 (woohoo!!) and platelets 145.  So I got the order for dismissal!!!  I didn’t get out until midafternoon, but thankfully, the weather was just a bit warmer outside.  I do want to say that I had the BEST care the whole time I was in that hospital.  Every nurse and every nursing assistant was just great.  The doctors were great.  You know, when you are a nurse, you tend to watch every move everyone makes, but I didn’t feel that need there – I could tell every nurse I had was competent and very caring. 

Since dismissal, my biggest problem has been this area on the back of my head, making it hard to get a decent night’s sleep.  At first, I was taking pain pills.  Then I decided by chance to take an ibuprofen, an anti-inflammatory.  I’m not really supposed to take NSAIDS because they are hard on the kidneys, but I was desperate!!  Amazingly, within a short time, the pain eased.  Since then, I’ve decided that for this short period of time, a couple ibuprofen every 6 hours is not going to kill me right now – but the PAIN from this thing MIGHT!!

I am due to see Dr. Powers next Tuesday after I’ve had a CT scan of my chest, abdomen, and pelvis.  (I’ve also made an appointment with my plastic surgeon to have him look at the surgical area on the back of my head.)  This has been the one scan that I have dreaded ever since the last one I had.  I know it is going to “tell the big story”!  Either the three tiny spots in my right lung from the last time will be gone, and we’ll know what I’ve been doing is working, or I’ll have many more spots and the outlook grim.  I can tell that it is working on my face, but my face is a lot darker than it has been.  At one time I saw that Adriamcyin is likely to cause darkening of the areas where you’ve had radiation, but that does not account for darkening in my cheek.  Since I’ve been anointed and prayed for, I’m not as anxious about the results as I was.

I don’t know if it is God’s will for me to healed here on earth or there in heaven.  I pray every day that He would see fit to heal me here.  I have a lot of living I would like to do.  I always want to give God the glory for whatever He chooses to do and has done.  I always am eager to share my story and witness to God’s wonderful grace, mercy and blessings. But the human in me just wants complete healing here.

I can never thank all of you enough for your calls, MANY birthday cards and get well cards – from people I don’t even know!  But most of all for your prayers – there is SO much power in prayer, and they continue to pull me through (especially) the rough times!!

I would like to ask you to pray specifically for this week to come as I go to see Dr. Powers.  First of all, pray for my peace of mind as I await the results of the scan.  2nd, pray that my liver and lungs will be clear.  3rd, pray that whatever the results will be, God will give direction to Dr. Powers as to where to go from here. 4th, that if the results are less than desirable, God will give me a peace that passes all understanding, and I’ll feel His arms just carrying me for a while.  My faith is strong, but I cannot just stick my head in the sand, and deny the possible reality of a less than desirable outcome, especially since the last two visits to him have not been particularly pleasant.

My complete trust is in Him….

And as always…..I remain in His care…..

This is the purple coloring over this shelf of my face.  But the raised spots on my forehead and two on my cheek are nearly done.

My little Annie missed me so much while I was gone.  She would sit baby the door for hours just sure I was going to come in.

Those two spots at the top were just little tiny things when this chemo started.

I was putting Bacitracin on it, and I think it kind of burned the skin.  I'm just leaving it dry now.