Update :0(
Jun 27 2012 in Carla's Blog by carlaschuchman
So glad Caregiving.com is here whenever I have time to stop in.
Smokey recently had a pet scan. First the doctor called and said no cancer. Then another doctor looked and said the report doesn’t exactly say that. It explains that it could be infection or inflammation or… We are frustration with the time in between tests and how doctors, for whatever reason don’t just order tests promptly. What is up with that? Insurance?
The pet scan showed the fracture in the thoracic area, we knew that, showed an 8.7 uptake value in the cervical area, and a 13.7 in the lower intestine area. The radiologist suggested a bone scan, colonoscopy and upper GI next. That was a month ago. I went ahead and made an appointment with the neurosurgeon who did his past back surgeries. We see him today. He really would rather not have him touch him again, but it will be nice to get an opinion on his back issues. I am also stopping by a spine institute while in Charleston whose doctor is widely known for wonderful work. He has already said he would not touch Smokey, doesn’t want to go behind someone else’s work, but I would love his opinion as well.
His IM doctor has finally said he will schedule the colonoscopy when we see him on the 3rd.
We just wish they would tell us something concrete. Whatever it is! Smokey is getting so depressed. He feels he isn’t going to get better, and that he is dying and they are not telling him yet.
Does anyone have experience with pet scans or understand the terms? I did some research and I didn’t like what I learned, but I don’t know that I comprehended it correctly either.
Also, Mema is still upstate with our friends. They have graciously decided to keep her there a while longer. She is doing wonderful.
Oh, I had a client offer their home to us in NC. They live 30 minutes from Duke. I called them and reached a wonderful young lady that answered all my questions. Maybe we will go there….
Until next time, and hopefully good news,
Carla
Trish said on June 27, 2012
Carla,
It’s so frustrating to not have answers and to have to wait! How can you make decisions about care if you don’t even know what you’re dealing with? The doctors need to give you more information so you can make informed decisions about his care. If you moved and went to Duke, I wonder if they would be okay using the test results you currently have or if you’d have to go through all the tests again.
I’m sorry for these frustrations but it sounds like you are asking good questions and reaching out to others who may help. Good luck with the neurologist today. Let us know how it goes! (Also, great news about your friends keeping Mema for a while longer – that must be such a relief!).
Denise said on June 28, 2012
Hi Carla–It’s nice to be able to have you drop in when you can.
I wonder if you gained any more clarity with the appointments yesterday? It’s awful to wait. And, it’s awful to feel as if you can’t get a straight answer. I would imagine Smokey would feel better knowing something so that you both could feel like you can make decisions about any suggested treatments, make plans, in essence, go on with your lives. The waiting really can feel like you’re just on hold.
Tell us more about North Carolina…
carlaschuchman said on June 29, 2012
Hello everyone,
Well, Smokey’s back is broken. We knew that, he described it as wobbly. He doesn’t look or know anything about Pet Scans. We were there 4 hours, to make it short, he advises to redo the fusion but longer this time. He would have to cut the same to incisions as before only much longer. Smokey had so much pain from that, two cuts down the thoracic area of the spine, those big muscles. He said this was a major surgery. The other was even more he spoke about was even more major, that is out. I made an appointment with another doctor that has had rave reviews, for a second opinion. That is in a month. Regardless of what has to be done, the doctor said we first have to get the other issues cared for first, and then he will need to be much more healthier to be able to with stand the surgery.
So I guess we got a little more clarity. He did mention the cancer issue, and did not think that was the case and that he had never seen a cancer develop after a surgery. That is was usually the cause. Also he felt very sure that it was not infection in the bone, that Smokey would be very, very sick and unable to walk if he had a bone infection. However, he would like to move forward with a bone scan first to be sure that is normal, if not then a biopsy is in order. He wants him to have the colonoscopy first, that has to be taken care of first.
Trish, I wasn’t planning a move to NC, I just have clients there that offered us to stay with them should I decide to take Smokey there. And Denise, I know everyone has heard of Duke University. They are ranked number 11 out of 100 of the best medical universities in the USA. I just started making the calls to find out how we would get in there. I have not definitely decided to go there just yet. It is just a back up plan. It is quite a haul from us, but if they could help, I would. Right now we just have to stay in waiting mode until we get the other tests complete. Trish, yes, they would be able to use all the tests taken here. They may want to repeat a few of them if they were going to get to work in an area, but for the most part, as long as they are recent, they can use them.
Thanks guys and I will keep you up to date. Oh, got a call, Mema is coming home Thursday, I think they got tired. LOL, just a few days ago they called saying as long as I needed, yesterday I got a call, when can I bring her home? I am so thankful for the time we had, and thankful she has a good time when there. It’s hard here at home, I don’t have the funds or time to take her camping, shopping, out to eat, traveling…they do and I am glad she gets to take a break to do that! I have to admit, I would like to do that too. ;0)
Morninglory said on July 15, 2012
I am new to Christian Caregiving and just reading about Smokey. By now, I am sure many decisions have had to be made. Here’s my prayers added to others for your and Smokey’s well-being.
“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all” (2 Corinthians 4:16–17).KJV
More Blessings to You & Smokey