Latest Scan Results and Doctor Visit

A couple of weeks ago, I knew this latest scan and visit with Dr. Powers was one I really dreaded.  I knew, because of the last visit that gave me bad news, this one would be a very important scan that would tell a lot – either I was getting better, or I was continuing to get worse.  I prayed so much for peace about it – that I would not stress out about it.  And God did give me that peace.  I stopped thinking and worrying about it.  I felt like whatever it showed, I could handle it.

The scan was at 10:30, and then we got breakfast because I could not eat 4 hours prior to the scan.  Then we met with Dr. Powers at 1:00.  I never can tell what he is thinking when he first comes in because he is always warm and smiling.  He always asks how I’m doing.  He knew about my hospitalization.  I told him I was feeling good – a lot stronger after getting out of the hospital.  He showed me on the computer the results/pictures of the scan.  The 3 nodules in the right lung were still there.  One was 2-3 mm and is now 7 mm.  One is 4 mm and unchanged from the last scan in Nov. (but was not there in Sept).  One in the lower right lobe was 5 mm and is now 7 mm.  I think this is the one that had “popped” and pulled away just a bit from the rib cage causing a small pneumothorax (air pocket between the lung and rib cage).  It is small enough that a chest tube is not necessary.  There is a 4mm nodule in the left middle lobe that remains unchanged from last scan.

You may remember me talking about 2-3 months ago about turning over in bed one night and feeling a definite POP in my left side, just above my waist, causing a great deal of pain which lasted several weeks.  I went to my PCP in Hutch, and he did a CT scan which showed nothing.  Shortly after that, my regular appointment with Dr. Powers was due in Nov.  That CT scan showed nothing in that area.  THIS visit and scan, however, did show “within the posterior left 10^th rib, there has been development of a local destructive and mildly expansile lesion.”  In other words, there is a small tumor in that rib now which indicates metastasis.  The strange thing is that it has not hurt for about 2 weeks.  But, nevertheless, this angiosarcoma is still on the move.  L

Dr. Powers said that the purple on my face is still active angiosarcoma.

The bottom line is that the Ariamycin that I’ve had 3 doses of, is not working.  All it has done is make me sick, so he said he is not giving me anymore of that or the Neulasta. 

Then he dropped the bomb……He said that perhaps I might want to consider hospice care for the future.  Hospice……that is not a word I wanted to hear.  I’m feeling good, and I’m not willing yet to give up the fight.  I asked him about the Avastin that he has often mentioned to me.  I knew that was not a particularly good option because the last surgical area on the back of my head has still not healed.  That’s the reason he has not used it before.  It halts the healing of anything that is not healed.  Avastin is given IV every 3 weeks.  If you have some major side effect, you can’t take it back.  There are 2 different pills that act similar to Avastin, but if you have a bad side effect, you can just stop the pills.  So it was decided that I would go that route and give this a try.  These particular medications go to the cancer cells and cut off their blood supply, so they cannot reproduce, acting completely differently from regular chemo.  I will be taking Nexavar (sorafenib).  The pharmacist went over this in GREAT detail, making sure no one but myself would handle it – of it gets onto my countertop, I must clean the spot with bleach!  I’ll be taking 2 pills a day, 12 hours apart, on an empty stomach – 1 hour before food or two hours after food.  She went over the side effects very carefully, but said, of course, not everyone gets them all.  She said it might take a week to 10 days to get it approved through my insurance – they typically have to jump through lots of hoops.  It is EXTREMELY expensive!!  On the way home, she called me to tell me they already got it approved, and they would put it in the mail right away.

I’m not sure how much faith Dr. Powers has that this will work, but I’ve said all along that as long as there was something I could do, I would do it.  When we run out of options, then I’ll think about hospice, but not until.  I still have hope.  I HAVE to still have hope! 

Wednesday, I went to see Dr. Przylecki, my plastic surgeon.  I just wanted him to look at this place on the back of my head and tell me that it was OK – that it was healing and not infected.  He seemed positive about it – that it was healing.  I told him about the medication I was going to be taking and how it stops healing.  He told me it was more important to take the medication, and if it bothered this spot, we would just deal with that then.  So that made me feel better.

From there, we went back to Mark’s, went out with them for lunch, and then came home.  We had considered staying the rest of the day.  They kind of wanted us to go to Chris’ basketball game in the afternoon, but we thought it best to come on home and not get me out in crowds.  It is a good thing we did because I’m not sure I could have taken the stress of the next event.

Chris (8th grade) was warming up before his game, went up for a layup, and the next team mate did not wait his turn until Chris got out of the way, and when Chris came down, the other boy’s elbow came crashing into Crhis’ mouth.  It broke off the bone above his upper front teeth, affecting three of his front teeth.  The only good thing is that he has braces that held the teeth in the gum.  He was taken to this orthodontist who put the bone back in place and hard-wired it all back together.  This morning I asked how he was doing.  Mark had him at Children’s Mercy Hospital being checked out for a concussion, since he couldn’t remember his home room teacher’s name or his friend’s name.  He was diagnosed with a mild concussion and is to rest and cannot play any sports for the rest of the week.  Bless his heart!!  He is such an athlete, and he puts his ALL into whatever sport he is playing.  This is his 3rd broken bone, with the other two due to soccer.  A prayer for Chris to heal properly and have comfort would be appreciated. 

This wasn’t enough drama at Mark’s house this week.  You’ll recall that he has these two beautiful golden retrievers that are 10 years old.  Last weekend they were at our house while Mark and Chris went to a soccer tournament in Dallas.  The one, Heidi, has been having issues for some time with her hips.  She cannot come up the steps by herself.  The vet x-rayed her a few weeks ago, and said her hip joints were just gone. By the time we kept her last weekend, she had all but quit eating, and was terribly skinny.  Mark said he was having to think about having to have her put to sleep.  By the time we got to OP Monday, she had quit eating altogether.  That usually means a dog is in pain.  She just wanted to lie on her bed.  She would get up now and then to have you pet her.  Wednesday morning, they had an appointment with the vet to see what he thought and if she should be put down.  I thought sure he would have her put to sleep then, but he brought her back, saying that the vet had done some x-rays and blood work.  Later in the day, the vet called to say she had a tumor on her bladder, and she was in renal failure.  So early this morning, among all else that was going on, they had to have her put to sleep.  Bless his heart!  I know that was terribly rough on him.  Praying for him. 

Chris will be with his mom this weekend, so Mark and Amy are coming here and to Hutch to celebrate Amy’s birthday.  He said he just had to get away, to rest and clear his mind. 

Although this has been a rough week for our family, I stopped to think of what I have to be thankful for.  Here are a few: 1) The liver was clear.  The spot that had been ablated is shrinking in size. 2) My pancreas and spleen were clear. 3) There were no NEW spots in my lungs. 4) Guy, in the midst of my crushing feelings after hearing the word “hospice” took my hand and said, “There is still hope.” 5) After going back to Mark’s, Amy was there to hold me and just let me cry.  6) In spite of the bad news, I still feel good.  The spot on my head has pretty much stopped hurting, and I’m in no other pain. I feel pretty strong. 7) Though all this, I’m still infection free. 8) I’ve heard from SOOOO many family and friends that are praying for me and cheering me on.  THANK YOU dear ones!!  9) My pastor came by for a visit this morning and encouraged me, read Scripture, and prayed with me. 10) My devotion yesterday was again spot-on. 

11) GOD IS NOT FINISHED WITH ME YET.  Although I do not understand why I’m not healed, I know there is still a purpose for me as long as I’m here.  I try not to question His ways or plan for me, but I’m human, and sometimes I just do.  Sometimes I think I could be so much more effective for Him, if I were just miraculously healed.  What a testimony I could have!!  I would shout it from the rooftops!! However, as I pray each day for that healing, I do not get a clear feeling/assurance that it will happen this side of heaven.  But I don’t give up praying, and I don’t give up hoping.  I just can’t! I . just . can’t!! 

As always……I remain in His hands….

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 19^th, 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 1^st 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, 1^st 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.  2^nd, pray that my liver and lungs will be clear.  3^rd, pray that whatever the results will be, God will give direction to Dr. Powers as to where to go from here. 4^th, 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.