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……