Well, I've got good news, I've got GREAT news, and I've got sorta sucky news. Normally I'd start with the great news, but since the great news requires you to understand the sucky news, I'll start with that one.
Short recap: insurance was denying the PET scan that Dr. Le (my oncologist) was requesting. PET scan is the thing that checks for cancer. Insurance said "No. Only every 6 months, not every 3." So, they were going to have to do a CT scan instead. The problem with a CT scan is that it requires 2 things: drinking the most God-awful concoction that I have ever had, and then putting a contrast dye into my bloodstream. Last time I tried to get this done (b.c. haha! Before cancer! I'm so witty...) they couldn't do the intravenous contrast dye because my creatinine level was too high. (Creatinine level measures basic kidney function.) When they did the CT last time, it felt kinda pointless since the scan only showed a "thickening of the walls" in my small intestine. That's it?!?! For that massive tumor in my intestine, all it showed was a thickening of the walls?!?! If that's all it can do without the contrast dye, I'll pass. But they were still telling me that this was the only test I could have. However, they decided to double check, see how my creatinine was doing. So that's where we left off last time... Prayer to get approval for a PET scan.
The sucky news is that my creatinine was significantly high. My Nephrologist immediately ordered a 24 hour urinalysis. I got to collect my pee for 24 hours. Ewwww.... So, I got the call today about how that had gone. Conclusion? My kidneys are only functioning at somewhere between 40%-50%. Not renal failure, but not great either. Of course I immediately googled what percentage renal failure was. It is around 20%. When it is approaching that, they start talking about dialysis and transplants. I've already had 3 family members offer a kidney:) My family rocks. I feel VERY loved! Next step: I am going in Monday morning to have an ultrasound of my kidneys. Not sure what that does. From what I remember last time I had that done (sometime in high school), the left one is sorta shriveled and gimpy. I guess it's just a matter of finding out how much gimpier it has gotten since then.
So, the good news is that the doctor that the kidney doctor who normally takes 6 months to see is fitting me in next Wednesday!!! Eaaaarly... (before school. I'm sure I'll be all bright eyed and bushy tailed for class... cough... sarcasm...) On one hand, it's pretty awesome that he is getting me in so soon! On the other hand... Should I be concerned that he's jumping on this so fast? In my past experience, when they rearrange their schedule for you, it's not a good sign... But for now, I'll just chose to think it's because he likes me so much.
The GREAT news is that after haggling with insurance about how I can't have the full CT scan because of my kidneys, they have agreed to let me have the PET scan!!! Wooohoooo!! No nasty barium!! I'm pretty stoked about that. That will take place, also eaaaarly tomorrow morning. (like be there by 6:30).
Between now and next Wednesday afternoon, I have 4 doctors appointments, and 2 procedures. Phew! It'll be a busy week! Thank God for modern medicine!!
Showing posts with label scan. Show all posts
Showing posts with label scan. Show all posts
Thursday, August 25, 2011
Wednesday, September 15, 2010
Update: PET SCAN CLEAR!!!! Chemo plans...
Wooohoooo! The PET scan was clear! This was so huge! Now that it's clear, I'll explain why it was such a big deal. I didn't want to freak anyone out before, but if they had found anything anywhere else, it would have put me immediately into the stage 4 category with a 95% mortality rate within a year. I didn't want to freak anyone out unnecessarily. But we are good!
From here, I am waiting to hear back about installing the port. Apparently, the port is something that they install under the skin that will just feel like a bump. It's kinda like a permanent IV hole, but the skin actually grows over it. The only stick I'll have during chemo is to puncture the skin covering the port. But that's not bad. It's not like having to dig for a vein that may or may not roll. The port is installed via an outpatient surgery-like procedure. On the up side, they do put you under, so I'll be out when they install it. On the down side, I am already taking quite a beating recovering from this last surgery's anesthesia. But this one should be much less gnarly since I'll only be out for about an hour, and not multiple hours, like the small intestine resectioning.
The nurse said that they were going to try to schedule for this Friday to do that, but might have to do it next week. Chemo, as of now, is scheduled to start on September 29th. It will consist of a 2 day process that I will do every other week. First, I'll go into the cancer center at Plano Presbyterian hospital. I'll always see my oncologist (Dr. Le) first. Then, they'll hook up my port to one type of chemo and let it run for around 2 hours. Then, they'll unhook that one and hook me up to another one for about an hour, hour and a half. Then, they give me the third one, which I actually take home with me. I'll get to sport a sweet little fanny pack for 46 hours, and then come back into the office to have it disconnected. John's excited about decorating it. I'm a little more skeptical as to the extent we can make it fashionable. But maybe I could sew a couple of little cover bags to match various outfits. We'll see.
Dr. Le is a bit worried about how my body will respond to the chemotherapy. She is sensing (rightfully) that my body is much more sensitive than most. That, and apparently thinner people have a harder time. Since I just dropped below 100 lbs, she is expecting that I may have a bit harder time with the chemo. She is prescribing me some mega-anti-nausea meds, so I am thankful for that. She is really a sweet, caring doctor. I like her. Also, she presented that paper on my case at the conference, where the 8 other doctors looked in depth at my case. They were all in agreement as to both the diagnosis, as well as the course of treatment, so I feel confident that we are doing the right thing.
Some of the side effects that she expects will be nausea (of course) as well as a fairly severe cold insensitivity. As she described it, I won't be able to drink cold beverages as it will "feel like you are swallowing glass shards". Appetizing... I won't be able to reach into a freezer even at the grocery store! So weird... But, we'll see what else pops up. I hope that I don't psych myself into having some plethora of psychosomatic symptoms stemming from my own expectations of it being really gnarly. My mind is excellent at wreaking havoc like that.
Anyways, that is the main update for now. There was a whole lot more information, but this is long enough. OH! One more thing. Apparently my "uncommon" form of cancer is SO "uncommon", that it is not even listed in the national registry of cancers. They list like, everything, and mine is so uncommon that it didn't even make the list! I knew I was special...
From here, I am waiting to hear back about installing the port. Apparently, the port is something that they install under the skin that will just feel like a bump. It's kinda like a permanent IV hole, but the skin actually grows over it. The only stick I'll have during chemo is to puncture the skin covering the port. But that's not bad. It's not like having to dig for a vein that may or may not roll. The port is installed via an outpatient surgery-like procedure. On the up side, they do put you under, so I'll be out when they install it. On the down side, I am already taking quite a beating recovering from this last surgery's anesthesia. But this one should be much less gnarly since I'll only be out for about an hour, and not multiple hours, like the small intestine resectioning.
The nurse said that they were going to try to schedule for this Friday to do that, but might have to do it next week. Chemo, as of now, is scheduled to start on September 29th. It will consist of a 2 day process that I will do every other week. First, I'll go into the cancer center at Plano Presbyterian hospital. I'll always see my oncologist (Dr. Le) first. Then, they'll hook up my port to one type of chemo and let it run for around 2 hours. Then, they'll unhook that one and hook me up to another one for about an hour, hour and a half. Then, they give me the third one, which I actually take home with me. I'll get to sport a sweet little fanny pack for 46 hours, and then come back into the office to have it disconnected. John's excited about decorating it. I'm a little more skeptical as to the extent we can make it fashionable. But maybe I could sew a couple of little cover bags to match various outfits. We'll see.
Dr. Le is a bit worried about how my body will respond to the chemotherapy. She is sensing (rightfully) that my body is much more sensitive than most. That, and apparently thinner people have a harder time. Since I just dropped below 100 lbs, she is expecting that I may have a bit harder time with the chemo. She is prescribing me some mega-anti-nausea meds, so I am thankful for that. She is really a sweet, caring doctor. I like her. Also, she presented that paper on my case at the conference, where the 8 other doctors looked in depth at my case. They were all in agreement as to both the diagnosis, as well as the course of treatment, so I feel confident that we are doing the right thing.
Some of the side effects that she expects will be nausea (of course) as well as a fairly severe cold insensitivity. As she described it, I won't be able to drink cold beverages as it will "feel like you are swallowing glass shards". Appetizing... I won't be able to reach into a freezer even at the grocery store! So weird... But, we'll see what else pops up. I hope that I don't psych myself into having some plethora of psychosomatic symptoms stemming from my own expectations of it being really gnarly. My mind is excellent at wreaking havoc like that.
Anyways, that is the main update for now. There was a whole lot more information, but this is long enough. OH! One more thing. Apparently my "uncommon" form of cancer is SO "uncommon", that it is not even listed in the national registry of cancers. They list like, everything, and mine is so uncommon that it didn't even make the list! I knew I was special...
Sunday, September 12, 2010
Update: Where do we go from here?
So, we met with the Dr. Le (prounounced Lee), the Oncologist last Wednesday and Thursday. My surgeon said that she was the best, and who he would take himself or his family to if one of them were to get cancer. That was super encouraging. She went over the diagnosis and some details of adenocarcenoma. (details which I'll sort through later and maybe publish, depending on the appropriateness or level that I want to divulge). The main thing that she let us know in no uncertain terms was how uncommon (not rare, uncommon) my particular case was. The reason they had originally thought it was lymphoma and NOT adenocarcinoma (before the surgery) was because of it's size. It was way bigger than adenocarcinoma usually is. So size makes it uncommon. Location also makes it uncommon as there are very very few found in the small intestine. Adenocarcinoma is predominantly found in the Colon (large intestine). So size, location, and finally my age, make this type of cancer extremely uncommon, which means there is a lot less research to go on when deciding treatment, odds, prognosis, etc. One of the super cool things though, is that because it IS so uncommon, she is actually presenting a paper on my case at a conference coming up. What that means is that I'll have 8 (count em, EIGHT!) doctors all looking in depth into my case and diagnosis. Talk about second opinions! I'll have eight second opinions! Super cool...
My level of diagnosis is currently considered stage 2b. There is 1, 2a,2b,3a,3b,3c, and 4. So, 2b isn't as good as it could be, but definitely not as bad as it could be. The main thing that classifies me as a 2b is the fact that they didn't find any cancer in the lymph nodes surrounding the main tumor. This is huge, repeat HUGE. I would have a much worse outlook if there had been any cancer in those nodes, because once it is in nodes, it is much much more likely to metastisize (ie: spread) throughout to the rest of the body. Since the lymph nodes didn't have anything, best guess is that the rest of my body doesn't either.
So, the next step from here is to make an appointment to come in next week for another scan. What they are going to do is shoot me up with a lot of glucose (apparently cancer is a total sucker for sugar. Aren't we all?) The glucose will have some sort of dye mixed with it. IF, repeat IF there are any cancer cells anywhere else in my body, they will show up under the scan. The cancer sucks up the glucose with the dye, and then it is easily seen. This is what I need the most prayer about. For those of you who believe in prayer, I ask earnestly for you to pray for this. I will be asking my close friends, and anyone else who feels led, to fast the day before or the day of. I can't stress enough how important this test will be. Again, we don't have any reason to believe that there will be anything anywhere, but then again, this is me we are talking about. I don't exactly have a track record of following "norms".
So, after that, when we of course find no trace of cancer anywhere else (please Lord God), we will talk chemotherapy. The plan as of now is for me to wait about 3 weeks till I have totally healed from the surgery, and then start chemo. Chemo, as of now, is planned to last about 6 months. I am going to have something installed in me called a "port". From what I can tell, it's like having a gas tank portal in your body where they just open the hatch and put stuff in. On the up side, this means I won't have to get stuck every time. On the down side... we're talking about a girl who won't wear EARRINGS because she's afraid they will get pulled or ripped or tugged etc. Those are my ears. This is like a hole in my body that could get tugged or torn or whatever. I don't know if it is actually like that, but that's what it sounds like.
The type of chemo (for all you google nerds out there) is called Fol-Fox. Don't ask me what it stands for. I'll post more as soon as I do my own research (which for those of you who know me, know it's only a matter of time...). There is no telling how you will react to chemo. They say everybody reacts differently. I am praying that I just get really tired, and I'm not hovering over the toilet 24/7. But we'll see. Anyways, that is where we are going from here. Thank you for all your calls and emails, texts, cards, etc. They have made such a huge difference. It is really awesome to know that I am not alone in this. I love you all.
My level of diagnosis is currently considered stage 2b. There is 1, 2a,2b,3a,3b,3c, and 4. So, 2b isn't as good as it could be, but definitely not as bad as it could be. The main thing that classifies me as a 2b is the fact that they didn't find any cancer in the lymph nodes surrounding the main tumor. This is huge, repeat HUGE. I would have a much worse outlook if there had been any cancer in those nodes, because once it is in nodes, it is much much more likely to metastisize (ie: spread) throughout to the rest of the body. Since the lymph nodes didn't have anything, best guess is that the rest of my body doesn't either.
So, the next step from here is to make an appointment to come in next week for another scan. What they are going to do is shoot me up with a lot of glucose (apparently cancer is a total sucker for sugar. Aren't we all?) The glucose will have some sort of dye mixed with it. IF, repeat IF there are any cancer cells anywhere else in my body, they will show up under the scan. The cancer sucks up the glucose with the dye, and then it is easily seen. This is what I need the most prayer about. For those of you who believe in prayer, I ask earnestly for you to pray for this. I will be asking my close friends, and anyone else who feels led, to fast the day before or the day of. I can't stress enough how important this test will be. Again, we don't have any reason to believe that there will be anything anywhere, but then again, this is me we are talking about. I don't exactly have a track record of following "norms".
So, after that, when we of course find no trace of cancer anywhere else (please Lord God), we will talk chemotherapy. The plan as of now is for me to wait about 3 weeks till I have totally healed from the surgery, and then start chemo. Chemo, as of now, is planned to last about 6 months. I am going to have something installed in me called a "port". From what I can tell, it's like having a gas tank portal in your body where they just open the hatch and put stuff in. On the up side, this means I won't have to get stuck every time. On the down side... we're talking about a girl who won't wear EARRINGS because she's afraid they will get pulled or ripped or tugged etc. Those are my ears. This is like a hole in my body that could get tugged or torn or whatever. I don't know if it is actually like that, but that's what it sounds like.
The type of chemo (for all you google nerds out there) is called Fol-Fox. Don't ask me what it stands for. I'll post more as soon as I do my own research (which for those of you who know me, know it's only a matter of time...). There is no telling how you will react to chemo. They say everybody reacts differently. I am praying that I just get really tired, and I'm not hovering over the toilet 24/7. But we'll see. Anyways, that is where we are going from here. Thank you for all your calls and emails, texts, cards, etc. They have made such a huge difference. It is really awesome to know that I am not alone in this. I love you all.
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