Wednesday, November 29, 2017
This morning I called Dr. Page’s office early to see if they were going to start me today. She said that they did get the ECHO back, and it was just fine, so they would take me as soon as I could get there. Since I had just got out of bed, I cleaned up as quick as I could, got dressed, took my pills, and ate breakfast, and we took off. We got there about 10:00. There was only one other patient there when I got there. The nurse that took me was filling in from Salina, a town about 20 minutes north of McPherson. The other nurse there said she was new – been there about 3 months. She came from 8 years in an NICU, so she is not a new nurse. Kelly accessed my port easily and got blood, but when she tried to draw my labs, it just didn’t flow freely. She finally deaccessed my port and got a bigger bore needle. That worked very well. That process took quite a while, so the whole thing took much longer than anticipated. In the future, it will take about 1 ½ hours instead of 3. After she drew the labs, while we were waiting for them to come back, she went over all the orientation to their center, over all the meds I would be getting and the side effects. Each week I go in for labs, and then I’ll have the Adriamycin every 3 weeks. At that visit, I’ll get labs, and then I get a steroid IV, and a shot in my stomach, then I’ll get the chemo. They have a new med, an antiemetic (nausea), Sustol, that they give in the fatty part of the abdomen. It is thick and lasts for about 5-6 days. They numb the spot before giving because the bore of the needle is large since that med is thick. She said that they have really good results with this med, and most don’t have to take pills afterwards. I’m all for that! They also give Emend IV before the chemo to prevent nausea. So, they cover nausea pretty well!! Then the “Red Devil” is hooked up, and it takes about 45 minutes.
She said that they prefer to called it the “Red Warrior” since that is more positive. The chemo is red. She said it would turn my urine red, and it might turn the skin of the area that has had chemo red, too. I don’t care what color it is or what they call it – all I care about is that it goes out there and KILLS EVERY CANCER CELL IN MY BODY!!
Since one of the side effects is mouth sores, I loaded my YETI cup with crushed ice and took it with me. By the time they got the chemo started, the ice was perfect – and not a drop of water in the cup. I chewed on the ice chips the whole time to constrict the blood vessels of my mouth to decrease the chemo getting to the area. We’ll see if that helps.
I've heard of split personalities, but don't have a name for this.
So far nothing has shown up on the right side of my head. Thank you Jesus!!
On the way home, I got SOOO sleepy. I don’t think it was any of the medication, because steroids pump you up. When I got home, I walked Annie for 10 mins, made a strawberry rhubarb pie, went to a church soup supper, played the keyboard for the congregation to sing about 10 Christmas carols and came home. I’m not nauseated (Praise the Lord!), and only feel just tired. I think that is just from a little bit of stress from the whole day. I didn’t feel particularly stressed, but just the newness of everything was tiring. Next time, hope it is a piece of cake!
Guy’s friend and former coworker is here for a visit from Alabama. He is an avid deer hunter (well, an avid hunter PERIOD), and he and Guy are all set to go after what they hope is Mr. Big tomorrow! Marion has had this trip planned for over a year. When turkey season came along last year, I was sick and kind of spoil his trip to get a turkey. The previous year he had been here in September (before all my surgeries started) and got two big turkeys. At that time I had baked a strawberry rhubarb pie, and, not ever having had rhubarb before, he thought he had died and gone to heaven!! J So, of course, when rhubarb was in season here this summer, I laid in a supply in the freezer, anticipating his coming at this time for deer season. So, the pie is made!
I really need to go to bed early tonight. Have a bit of a headache (side effect from the Sustol, they say).
Thanks so much for all of you that prayed for me today and pray for me each day! I simply couldn’t make it day to day without my prayer warriors and my God.
As always…….I remain in His hands……
Posted by Sheryl at 10:19 PM
Tuesday, November 28, 2017
(I have no idea why the first part of this has a white background!)
I saw my PCP this morning about this left side that is still giving me fits. Pinpointing the location, he thinks that the "pop" felt (the 3rd week of Oct) is likely a separation of the cartilage and bone on the lowest rib. It most likely happened originally due to being weakened by chemo....... and my age. (ARGH!) A couple weeks ago, it was getting a little better – enough that I didn’t think about it all day long. I probably reinjured it taking boxes downstairs. L Since that time, it has become a real thorn in my side – literally! I’ve had 2 CT scans since that time – one he ordered at Hutch and the other Nov. 6 in Kansas City – both of which were negative as far as this side was concerned. I asked if an ultrasound would show anything, and he said, “Probably not”, but he would order one. So, I had that, and it was negative. He said to just take anti-inflammatory pills for a few days (which I was told in Alabama to avoid due to my kidneys but he said my last kidney function test looked pretty good), and put some heat on it. AND not carry boxes downstairs or do anything that aggravates it! These things take long time to heal, and my body is not in an optimum healing mood right now!!
I was able this morning to pull up my last CT scan details from KC to show him. This was the first time I had seen those myself. This is interesting because it is not what my oncologist told/showed me when I was there for that last scan. He had just come from talking with the radiologist, but apparently when the final results were read and published, it changed a bit. Here is the report on my chest (I’ll put definitions in ( ) for those who are unfamiliar with medical terminology.):
Lungs and Pleura: There has been development of a tiny 4 mm (0.1 in) nodule within the right upper lobe with probable central cavitation (Cavitation is when the center of the tumor dies) on image 26 of series 2. Small 5 mm subpleural (situated or occurring between the pleura (a serous membrane that envelopes the lungs) and the body wall) nodule within the posterior right lower lobe on image 37 as well as a small subpleural sub-5 mm nodule within the right middle lobe on image 39 have also developed. No pleural effusion (an escape of fluid into a body cavity). Chest Wall and Osseous (bony) Structures: No destructive osseous lesions are seen.
So, before, I thought I had one tiny spot on each lung, but the final reading showed 3 tiny spots on the right lung. That was a bit unsettling. The one good thing (if there is any) is that the spots are all on in the right lung – far away from my right side pain – thus this pain I’m having in my left side is highly unlikely to be cancer. Praise the Lord for one blessing at least!!
I was able to get my ECHO of my heart moved up to 11:00, and I even got in there about 10:45. That would have been a piece of cake had I not had to lie on my left side the whole time. That was not comfortable, given the pain is on my left side, but thankfully it didn’t take long. I told the tech that the results needed to be called to Dr. Page’s office immediately upon being read. He said he would put a note on it. On the way home, I called Dr. Page’s office just to alert them when the ECHO had been completed. She said they had put a note on the order to called immediately with the results, too. She said to tentatively plan on starting the chemo tomorrow (Wednesday) morning. I hate to miss Bible study, but the doctor is not in on Wednesday afternoons. I suppose waiting one more day might not hurt, but I’m just so anxious to get it started.
My face is really getting bad. Just one week has made a big difference.
Here is 7 days ago.
Here is today:
I’m just hoping this one place on my cheek does not break open and start draining! And I’m praying it does not get into my left eye since the “rash” is coming down into that area near my eye.
You can see the reddened area down my temple and near the outer corner of my eye.
Here is the normal side.
I would sure hate to think of losing the vision in my left eye!!!!!!!!
Before we left Hutch, I went to the infusion center to check in with my favorite nurses. One was not there, but I talked with the other one and told her that I had changed to Dr. Page in McPherson. She hated that I would not be taking my treatment there, and I hated it, too. The nurse that worked for Dr. Haenel was there, and she said, “Oh, don’t you just love Dr. Page?!?!” I said that I did and thought it a bit strange coming from her. Oh, well, they all know the situation there, and I’m sure they are aware that several have left and are going to Dr. Page now. They asked me to stop by now and then to let them know how I was doing. I told them that I would. Anda told me that this chemo I was going to take was stronger than the one I had taken. She said to prevent mouth sores, keep ice in my mouth the whole time I’m getting the drug infusion. I was glad for that tidbit, because I had not read that anywhere, but it makes sense.
The chemo I’ll be taking is Adriamycin, and it is a common chemo agent for lots of different cancers. As I understand it, it is a “push IV”, so it doesn’t take long, and I think it is every 3 weeks. It is red and will turn my urine red. It is more likely to cause nausea than the 1st med, so I’m to take a nausea pill every 8 hours for 48 hours. I really don’t like nausea or vomiting, so I sure hope that pill works. I’ll let you know how the first dose of chemo goes. I just want to get it started.
I’ve been blessed to have this 4 ½ months off. I’ve felt good (except for this pesky side!), and I plan on feeling good through this next round, God willing. I appreciate all your prayers more than I can say!!
As always……..I’m in His hands…….
Posted by Sheryl at 8:05 PM
Tuesday, November 21, 2017
Last week I was able to see the new oncologist from McPherson – a town about 20 minutes from here (closer than Hutch and smaller than Hutch). I really liked him!! He was very nice, and he had done his homework getting up-to-date on my records that KC sent to him. He seemed very knowledgeable about angiosarcoma, too. I never got that feeling from Hutch. He took time and listened to me – spoke to me on my level. I told him about my desire to have my eyes done, and he said that would be a good thing to do while we were in this “holding pattern” waiting for this last big surgery on my head to heal completely. I left there feeling really good about him and going there for future treatments if needed.
In order to have my droopy lids fixed, I would have to take a field vision test to see if I qualified for my insurance to cover it. I called my Hutch eye doctor and set that up for today. He had planned to do it in December, but I told them that if I were to have the surgery, it would need to be done asap, so that I could begin treatment again for the cancer. I was afraid of putting it off too long. I saw the eye doctor this morning, and they ran the test. It showed I very definitely needed the surgery. When I talked with the doctor, I told him that I would probably have the surgery at KUMC so they could remove this spot on my forehead at the same time. He was perfectly OK with that and said just let him know.
After I went home, I decided that perhaps I should email Dr. Powers pictures from a week ago of my head and my cheek and pictures of the same taken today. Here are the pictures and the content of my email.
To Dr. Powers
"I wanted to send pictures of my head from Nov 13 and today, the 20th. There’s not a lot of change yet - hadn’t really turned purple but had become more red. I am contemplating the eyelid surgery at KUMC. I’ve been tested and qualify. I’ve talked with Dr. Przylecki about it. I was thinking that I could have this place taken off my forehead at the same time. Do you think this is something I should do (have this spot removed)? You’ll notice the blotchy red area is coming down onto my forehead, so I don’t expect clear margins. You’ll also notice these spots on my cheek are more prominent and are raised. My big question is: can I wait this long (to get the surgery and heal) or do I need to just forget the eyelid surgery and get back into treatment? I probably could not get the surgery scheduled until the 2nd week in Dec.
PS I saw Dr. Page and really liked him!! He said to get the surgery while we were in this holding pattern. I just didn’t know if we would be waiting too long to start treatment again, given the spots on my face."
Here is the reply I got back from him this afternoon:
"I think we need to abandon the eyelid surgery and proceed with systemic therapy asap. This is starting to take over the whole left side of your upper face, let alone these small new pulmonary nodules.
I would say we should start with doxorubicin-containing regimen for now, as I am still a bit worried about using avastin with the graft in the back. I would be using doxorubicin IV push every 3 weeks.
Do you want to get started up here next week? Then transition to Dr Page's office after the first cycle? You will need an echo before the first dose.
Let Stacie know how you want to proceed, and we will tell you more of what we need from you...
Benjamin Powers, MD"
This morning before seeing the eye doctor, I prayed that God would help me make the decision about the eye surgery. Well, that prayer was certainly answered – took it right out of my hands! I’m kind of disappointed to not get my eyes done, but it’s not like I’m blind. I’m actually kind of relieved. I was kind of uncomfortable being away from chemotherapy for this long (since June 20), knowing what was going on inside and on my head, and now my face.
So tomorrow I’ll be calling KU to see if I can get it scheduled to start next Monday. We need to be back here Tuesday because a friend of Guy’s from Alabama is coming for a few days to deer hunt. I wouldn’t mess that up for the world since he is SOOO excited and has been planning this for a year. He said not to worry about him. I don’t think one treatment will cause me to get sick for the week, so I think I’ll be just fine. Besides, I messed up his planned trip here for the last turkey season since I was sick then.
I did look up the chemo agent, and it appears to not have very many side effects. One thing I noticed was that neuropathy was NOT listed. That will be a big blessing in itself!! Nausea, vomiting, and mouth sores are possible, but not very common. Those were SE of the last chemo I took, but I didn’t experience them. The only real SE from my last med was neuropathy. The other side effects had to do with the steroids I had to take. I’m going to ask tomorrow if I have to take the steroids as I did the last time. If I do, at least I know what to expect this time.
The other thing is that I take it every 3 weeks – like the avastin I thought I was going to take. I’m kind of relieved that I’m not doing avastin at this time since it slows healing so much. And, although Dr. Przylecki said I was healed, it was not to Dr. Powers’ satisfaction – and mine.
I’ve felt really blessed these few months off chemo. I have felt much more like myself. My energy level is not up to par, because I get worn out pretty quickly if I try to do something strenuous – like going up and down stairs several times, trying to lift things I used to lift, etc. Just last Sunday morning, I took my shower and was getting ready for church just like I always do, but before I could get dressed, I had to sit down and fan myself because I got terribly weak. I hadn’t done that for some time! I do break out in a cold sweat if I overdo. I just sit down and fan until it passes.
Guy and I decided that we should move all my quilting stuff downstairs from the 3rd bedroom on the ground floor. I’ll have at least twice as much room down there and will be able to get all my stuff out of boxes and spread out. There is one giant room down there beside the 4th bedroom, a full bath, and a large storage room. The grandkids will still have plenty of room to play and watch TV down there. We can then put the two twin beds from the bedroom in the basement up here on the ground level. We’ll probably eventually put in one of those stair-climbing chairs, but for now, I can climb stairs OK – I just take it slowly. We took some of the light things down there this week, but it was a comical mess watching us try to get a heavy kitchen-type (that my Bernina sits on) table down there!! Guy was about to bust trying to hold onto it from above, and I was scared to death for him to let go at all, because I was afraid of falling over backwards if I could not hold it. It was hilarious – but not really! We stopped after that! There wasn’t an ounce of energy left in either one of us when we finished. 😀 I think we’ll wait until the kids come later this week to help. We’ll probably just call the movers we used to move from the Eagle St house to this house to haul the 3 large and 4 small bookcases down there.
Dec. 1 a nice couple with two cute very young boys will move into our other house here to rent for about a year until they get a new home built near Hutch. We have a few things left over there that we need to get out – some dishes and a closet full of quilts. Then we need to do a little cleaning to get ready for them. Hope we can get that done this week. So much to do…….so little energy!
I am just so in love with this devotional book!! Jesus Calling – Morning and Evening The other night, this was my devotional: (you can click on it to enlarge it)
Did you see that down at the bottom??? “Receive my healing….” RECEIVE MY HEALING!!!! I got so excited, I could hardly stand it!! I sat there on the bed with my arms outstretched, and my palms turned upward – ready to receive it! Did I wake up the next morning to find all my spots gone? No, but that’s OK. I would have died of a heart attack right there on the spot if that had happened!! But it renewed my faith. I love those verses from 1 Cor. 4:7-9 “But we have this treasure in jars of clay to show that his all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”
I don’t know how God plans to heal me – whether miraculously, or using doctors and medications, or taking me home with Him. It is not for me to decide or even know, but I will . be . healed. I praise God for that!
And as always……..I’m in His hands……
Posted by Sheryl at 12:09 AM