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Date Posted: 09:39:18 07/08/13 Mon
Subject: Results Update 7/7/13
I just read your many beautiful notes out here, and I know that you have been worried. It was bittersweet reading all of your messages of concern. You really do care and it shows. You learn who your real friends are in a crisis like this. I am blessed to have you (sincerely).
I have been unable to write before now because I have not been able to process the results in my own head. This scan has left us with more questions than answers. It's hard to tell others what is going on when you are not sure yourself. John and I are frustrated, angry, uncertain, confused, and feeling sick to our stomachs over all of this. When the people from the hospital called to go over the scan, and it's many rules, we discussed the fact that I would be taking insulin. They said that this was fine as long as it does not get injected any more than 4 hours before the scan or it can mask things and be less reliable. I had at least three calls from them about the is scan, with even registration asking if I was a diabetic. I told them that I am a new diabetic as a result of the chemo (so many out there with this exact issue after doing chemo, and yet nobody tells you that your skyrocketing levels could be permanent).
Not once did anyone ask me what type of insulin I would be injecting myself with before the scan. Not once did they ask me if I was taking long acting or short acting. I even got up in the middle of the night so that I could inject myself even earlier than the required minimum so that nothing could interfere with this scan (as you know, we have been working hard to get my blood sugar levels down so that they would not send me home if the number was too high). It's been a nightmare because I never had to do all of this prepping and worrying days before a scan, as my blood sugar was always normal. I injected myself nearly 6 hours before the exam with what I take (Levemir long acting insulin).
I starved myself for days to help the insulin do a better job, and upon arrival for the PET Scan, my blood sugar was 137, and I was incredibly relieved (and surprised). After doing the Pet Scan, a few days later I was looking up PET Scan instructions from the internet to see how long the radioactive tracer stays in your system (I had truly forgotten). What I saw made me really angry. This was the PDF instruction sheet from a major hospital and it said not to take long acting insulin within 12 hours of the PET Scan. I thought, you have to be freaking kidding me here! I then began downloading many other PDF instruction sheets from many well known hospitals and nearly all said not to take long acting insulin within 12 hours of a PET scan, but that you could safely take short acting insulin within no more than 4 hours before the test. I screamed like a Banshee. I swear to you that I could almost feel my head explode. Considering that a PET Scan is all based on sugar (it's why they have you not eating any carbs or sugar a couple of days before the test so that the cancer will easily light up and have higher sugar levels because they have been starved for a couple of days of their food supply). Cancer feeds off sugar. In other words, long acting insulin could interfere with the results as it could falsely lower your uptake dramatically and even miss tumors altogether because it's meant to control sugar. NOT ONE OF THESE NIMRODS ASKED ME WHAT TYPE I WAS TAKING!
I put in a call to the radiologist that read my images and created my report to ask if this scan could even be trusted or would I have to repeat it, and by the grace of God, he called me back. They usually will not talk directly to the patient, but I was desperate to know. He was quite sharp and very sweet actually. He told me that although it was preferable to not take any insulin period, that they usually recommend that it be short acting. He said that this does not necessarily mean the scan is inaccurate as every hospital has it's own take on insulin before PET Scans with some allowing the long acting, however as I told him, 90% of the hospital instruction sheets I found online said it was inadvisable. He began looking over my last Pet Scan from September as we talked, and then the one from the March before it, and suddenly he became concerned because the sugar levels were drastically reduced in the area's where the tumors were from last time. I knew where he was going with this, and that was my concern as well. I want to be happy, but only if it's because the results are real.
He then said something that left me unable to even talk, let alone come here and give you an update. I told him how much I was hoping that things had improved and he made a comment about the tumors not taking up as much sugar anymore from the new scan, however the new areas they saw in the brain would require an MRI with contrast. There was a moment of silence, and then he said "You didn't know did you" and I said no. :(
I could sense how terrible he felt and he said that this is why they don't talk to patients directly. I had mentioned speaking with my Oncologist about the report, which was true, so he assumed that he must have told me about the areas in the brain that are brand new, and not found in any of my prior PET Scans (long acting insulin may give you false negatives, but not false positives). If anything, you worry that it might mask things. I have been sick to my stomach ever since. They also saw something in my voice box, which coincides with that major hospital we went to, that basically sent me home to die that day stating that nothing more could be done. They had told me that the cancer was in my windpipe and clavicle (voice box area). I questioned this at the time because it was not in the report, and he said that I was right about this, it was not in the report, but could be clearly seen in the pictures. My head is spinning. I don't know what to think. I don't know what to feel. I am numb.
Next week, the new Oncologist is going to try and squeeze me in to give me the results via her opinion and look at the films (the only reason this happened is because they called me and said that nobody faxed them a copy of the report). I had specifically asked that one copy be faxed to my long time Oncologist and one be faxed to the ordering physician. I made a call and within minutes, a rep faxed it to the hospital I am still going to with the new Oncologist. They want me in next week, but she doesn't show any openings right now. They feel they can squeeze me in once she gets in on Monday. I passed on the debacle of the long acting insulin saga to the nurse I spoke to, so that the Oncologist knows in advance of our appointment and will have a recommendation. The radiologist indicated that they suggested an MRI be done of my brain in the report, which I cannot wait to get my hands on, so that I can read this thing for myself)! They usually give you a copy once you are done receiving the results, so next week, I should have a copy. I am vehemently opposed to taking Gallium (MRI Contrast) due to the dangers of that particular contrast, but the radiologist said that he has been doing this for many years, and that a CT of the brain can miss a lot. That an MRI with contrast is what you want to do in a situation like mine if you want accuracy. Welcome to my nightmare. Anyone that knows anything about Angiosarcoma, will know what it means if it has gone to the brain, and it's why I am trying harder than you know to be as calm as possible. Trust me, I am doing all I can........
I will have more of the picture next week. I will keep you posted......
I love you guys with every fiber of my being. Thank you for the love and support. XOXOXOXO. ♥
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Re: Results Update 7/7/13 -- Angie Smith, 13:30:15 07/08/13 Mon 
Just keep reminding yourself that God will not lead you where his Grace cannot keep you. I love you Raven and I keep praying for you, you are the strongest person I know.
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Re: Results Update 7/7/13 -- Ed, 05:21:04 07/09/13 Tue 
Although I've never commented on your site before, I frequently check it for updates on your condition, and I want you to know that you are in my prayers.
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Re: Results Update 7/7/13 -- wherly, 16:50:23 07/09/13 Tue 
My father was ill for a very long time and the stupidity and callousness of some of the people in the health care profession is staggering, if there's one place you need competent, compassionate professionals, then health care is it. Yes there are wonderful angels in health care also, but when you are going through such a nightmare and these are the people who are suppose to help and guide you when your devastated and overwhelmed then they should make sure that EVERYONE dealing with patients knows what they are doing and they do it well so that crap like this doesn't happen. I'm so sorry that on top of everything you have to deal with this, this is not where your energy belongs.
You and John are in my prayers and your strength and courage humble me.
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Re: Results Update 7/7/13 -- Mistyme, 00:34:06 07/10/13 Wed 
I am praying for you!!! Sending you lots & lots of love & a big hug too!!!
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Re: Results Update 7/7/13 -- Hannah (healing light, hope, and love), 01:13:47 07/10/13 Wed 
I pray daily for your complete healing, and never waiver when believing a miracle can come your way!
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Re: Results Update 7/7/13 -- Barbara, 08:05:49 07/10/13 Wed 
Oh boy, you've really and truly been thru the ringer with all of this. I kept thinking about you and your sugars and wondering if you could have the scan, and then I read this post and my jaw dropped! I'm so sorry, it isn't scary enough with everything you have had to deal with, but with the callousness, rudeness, misleading info, added to it all... I'm telling you, you are Wonder Woman... I have commented before about your Diabetes, as I too am Diabetic. I take Novolog to cover my meals, that is a fast acting insulin, another name of one is Humolog. I find it easier to control my sugars with this insulin. I do take a long acting insulin, Lantus, at 8:00 at night. I don't use pens, I use a syringe and the vial of insulin, but that is my preference. I know you have so much to deal with, but maybe give it a thought to discuss the fast acting insulin with your Primary Dr. I think you would do so much better and have better control over your #'s with it. Which in turn would be less stress on you.
Know that you and your wonderful John, are in my thoughts and prayers and I'm in your corner kiddo! Nothing but positive thoughts for you...
Stay strong my friend... Barbara
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Re: Results Update 7/7/13 -- John, 03:00:51 07/10/13 Wed 
Words can't describe the hell you are going through. I hate cancer and what it does to people. After reading what you posted, my stomach just sank..Just feel terrible. Its like you can't catch a break. I just don't what I can say about this whole thing. Its just not fair. We lose so many folks to cancern. I don't want you to leave us. I love all your soap opera insights and the nuggets that come along your way. Only thing I can do is pray for some type of a miracle and that maybe you can find the right care. At this point, I hope you can keep the pain level down. I will keep you in my prayers and hope for the best. Just wish they had a cure for cancer. We are just losing to many folks to it. Sadly, cancer doesn't care who you are, but only to destroy the body. But one thing it will never ever get is your soul, your heart, who you are as a person. It will NEVER EVER TAKE THAT AWAY from YOU.. You take care. I'll make sure Padre Pio watches over you and blesses you every day :)
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