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 10th 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….