The results of PET scans are definitely pass/fail. There's no middle ground for this sort of thing. No room for B-pluses or C minuses. You're either good (pass) or you've got something fishy going on that needs to be watched, biopsied, or removed (fail).
Dr. Oncologist was out of the office today, so substitute Dr. Oncologist called to give me what he thought were the time-sensitive PET scan results. Sub Dr. O called to tell me that I have a sinus infection. I said thanks, I'm already treating that. He said great and was about to hang up when I interjected, "How about my spine? I'm really nervous about my spine." He began to orally skim through the highlights of my PET scan results, starting with a normal-looking spine. Just as I was letting out the largest sigh of relief these former tuba-playing lungs could hold, he mentioned a 7 mm node on one of my lungs. "Tiny" and "bright" and "7 millimeters" are the only details I remember. He said that it could be an infection related to my epic sinus infection, and that it's small regardless of what it is. He said that my normal Dr. Oncologist will discuss it with me on Wednesday.
Logic tells me not to worry, because there is a very good chance that whatever it is is related to my sinus wars, or my recent surgeries, or my recent radiation therapy. My goal is to have that worry under control by tomorrow, and this post is, as always, therapeutic. This morning didn't I say something about Living, and happiness, and no need to worry? Time to go re-enact some Ring Around the Rosy.
Fail.
Showing posts with label spine. Show all posts
Showing posts with label spine. Show all posts
Monday, June 6, 2011
Thursday, March 3, 2011
Dad was right
There was good news in my future, and now it is in my past: the results of the cytokeratin staining are negative!!!! Woo-hoo!!!! There is no evidence of a tumor in my T9 vertebral body. Also, now that I am personally reading the report, I see that the atypical cells were "rare" in my sample. That is promising, it seems. So, what do we do now? We keep an eye on T9. Another PET scan in 3 months. Life goes on (albeit with some temporary back pain--turns out it's not so bad).
More good news regarding my platelet magic: the solution to the riddle is that my body is producing antibodies to heparin, and these antibodies also attack platelets. Heparin is a substance that gets injected into my port after every use to prevent blood clots in the port. It is not surprising that after 4 months of continued exposure to heparin my body is producing antibodies against it. The bummer is that these antibodies apparently also attack platelets, which I do not fully understand but certainly is not cool. Solution: no more heparin in my port. Instead my port will be flushed with saline after every use. This might put me at an increased risk for blood clots, but a girl can't live without her platelets. By ceasing exposure to heparin, my body should stop producing anti-heparin antibodies, and my platelets should live in peace. In the short term, Dr. Surgeon says she only needs my platelets to be at 50, so I should be good for Monday's surgery. We'll check the platelets again tomorrow.
Regarding the contaminated platelets, it seems that I have emerged unscathed. I asked how I was able to receive contaminated platelets, what part of the pipeline broke down. Dr. Oncologist said that platelets have a greater risk of being contaminated than red blood cells due to extra processing, and that bacterial contamination is detected by culturing (think Petri plates). Usually these bacteria grow up within a certain amount of time (probably 2 days), but the bacteria that were contaminating my bag of platelets grew slower and did not show their ugly faces until the platelets were already administered. Hence the contamination being missed, and possibly hence me not being sick right now. This last part is my own addition, and my thinking is that my body has been able to fight off these slow-growing bacteria that were not adapted to my Wonder Woman bloodstream. Considering the incredibly forward technology that I have at my fingertips everyday at work, it continues to amaze me that such low-tech methodologies persist in medicine. Said another way, I can't believe that we are still culturing to detect bacterial contamination. But I digress...
Last but not least, my cold: pretty sure it's turned into a mild sinus infection. We're skipping the CT scan this time and going straight to antibiotics. Gotta get this knocked out before Monday. I don't want anything to delay Monday's main event. The red spot that chemotherapy chased away is starting to come back a little bit, but you can only see it after a hot shower. Nonetheless, I'm ready to no longer give this spot access to my body. I have mentally quarantined it, but I need some surgical assistance.
NOW my back hurts. Time to give it a break. Thank you for being with me today. Thank you for being with me this week. Hardest week since October, to be sure.
More good news regarding my platelet magic: the solution to the riddle is that my body is producing antibodies to heparin, and these antibodies also attack platelets. Heparin is a substance that gets injected into my port after every use to prevent blood clots in the port. It is not surprising that after 4 months of continued exposure to heparin my body is producing antibodies against it. The bummer is that these antibodies apparently also attack platelets, which I do not fully understand but certainly is not cool. Solution: no more heparin in my port. Instead my port will be flushed with saline after every use. This might put me at an increased risk for blood clots, but a girl can't live without her platelets. By ceasing exposure to heparin, my body should stop producing anti-heparin antibodies, and my platelets should live in peace. In the short term, Dr. Surgeon says she only needs my platelets to be at 50, so I should be good for Monday's surgery. We'll check the platelets again tomorrow.
Regarding the contaminated platelets, it seems that I have emerged unscathed. I asked how I was able to receive contaminated platelets, what part of the pipeline broke down. Dr. Oncologist said that platelets have a greater risk of being contaminated than red blood cells due to extra processing, and that bacterial contamination is detected by culturing (think Petri plates). Usually these bacteria grow up within a certain amount of time (probably 2 days), but the bacteria that were contaminating my bag of platelets grew slower and did not show their ugly faces until the platelets were already administered. Hence the contamination being missed, and possibly hence me not being sick right now. This last part is my own addition, and my thinking is that my body has been able to fight off these slow-growing bacteria that were not adapted to my Wonder Woman bloodstream. Considering the incredibly forward technology that I have at my fingertips everyday at work, it continues to amaze me that such low-tech methodologies persist in medicine. Said another way, I can't believe that we are still culturing to detect bacterial contamination. But I digress...
Last but not least, my cold: pretty sure it's turned into a mild sinus infection. We're skipping the CT scan this time and going straight to antibiotics. Gotta get this knocked out before Monday. I don't want anything to delay Monday's main event. The red spot that chemotherapy chased away is starting to come back a little bit, but you can only see it after a hot shower. Nonetheless, I'm ready to no longer give this spot access to my body. I have mentally quarantined it, but I need some surgical assistance.
NOW my back hurts. Time to give it a break. Thank you for being with me today. Thank you for being with me this week. Hardest week since October, to be sure.
Wednesday, March 2, 2011
Limbo land
I thought there wasn't supposed to be a limbo land here, but I'm in it. The results of my spine biopsy returned "irregular" cells, but so far nothing more conclusive than that. Nothing obviously tumorish. There is one more test to be done, a cytokeratin staining, and we're supposed to have those results tomorrow. Positive cytokeratin staining means it's a tumor, and no cytokeratin staining means it's not a tumor. Obviously we're hoping for no staining, but then the result of the biopsy remains irregular and inconclusive. The plan for the future would be to keep an eye on it. Obviously this "answer" would be less than satisfactory, but much much much much better than the alternative.
Stress has been high, so I took a nap this afternoon. During said nap I dreamt about my possible T9 vertebral tumor. In my dream I realized that I never had a tumor, not even in my breast. I questioned what metastatic INFLAMMATORY breast cancer would look like--possibly irregular cells that lack ordinary tumor markers? I will pursue this line of questioning with Dr. Oncologist when I next see her, possibly tomorrow.
Intriguingly, Dr. O is more concerned about my platelet magic than T9. She thinks my platelets should be higher by now (they were 87 today, possibly in part due to the transfusion). She is worried that it might mean that I have bad bone marrow, and is thinking about sampling my bone marrow (which would be a nice control for the T9 sample, anyway). I told her that I'd like to wait on this bone marrow sampling business. I told her that today is the day I usually would have received the hard chemo, and that I have a cold, and let's just give my bone marrow time to recoup. You all have seen the graphs of my amazing blood cell recovery rates. I think that in the case of the platelets, we proceeded with hard chemo despite the fact that the platelets were lower than the cut-off, and now it's just going to take a bit longer for me to catch them up. Viruses can sometimes cause decreased platelets, too, and I have been fighting a cold for several days now. So I am all over the wait and see course of action when it comes to my platelets. Also, we're still waiting for the results of various platelet tests; why would we put me through another bone marrow sampling before we see those results? That's right, we shouldn't.
I'll take limbo land over tumor land any day.
Time to do something fun with the ladies.
Stress has been high, so I took a nap this afternoon. During said nap I dreamt about my possible T9 vertebral tumor. In my dream I realized that I never had a tumor, not even in my breast. I questioned what metastatic INFLAMMATORY breast cancer would look like--possibly irregular cells that lack ordinary tumor markers? I will pursue this line of questioning with Dr. Oncologist when I next see her, possibly tomorrow.
Intriguingly, Dr. O is more concerned about my platelet magic than T9. She thinks my platelets should be higher by now (they were 87 today, possibly in part due to the transfusion). She is worried that it might mean that I have bad bone marrow, and is thinking about sampling my bone marrow (which would be a nice control for the T9 sample, anyway). I told her that I'd like to wait on this bone marrow sampling business. I told her that today is the day I usually would have received the hard chemo, and that I have a cold, and let's just give my bone marrow time to recoup. You all have seen the graphs of my amazing blood cell recovery rates. I think that in the case of the platelets, we proceeded with hard chemo despite the fact that the platelets were lower than the cut-off, and now it's just going to take a bit longer for me to catch them up. Viruses can sometimes cause decreased platelets, too, and I have been fighting a cold for several days now. So I am all over the wait and see course of action when it comes to my platelets. Also, we're still waiting for the results of various platelet tests; why would we put me through another bone marrow sampling before we see those results? That's right, we shouldn't.
I'll take limbo land over tumor land any day.
Time to do something fun with the ladies.
Tuesday, March 1, 2011
I feel fancy
I'll save you a speed-reading skim by saying that I don't have any results yet. However, the pathologist came into the room during the procedure and took the samples right away. She and the radiologist think we'll have results this afternoon.
I wanted to let you all know that the spine biopsy is over and I am back in my room. It is normally an outpatient procedure, but Dr. Oncologist wants me to eat a meal here before she sends me home. Easiest thing I've done all day, to be sure.
I also wanted to tell you that the spine biopsy was no problemo. I'm rockin' the morphine et al. and was awake the whole time. I'm super with it, I just feel about 2-beers drunk and a little bit fancy. I want to document this experience on the blog because I might not remember it in the future (thank you, morphine).
I was very brave and kept my nerves under control. I laid down on a conveyor bed and slid in and out of the CT scanning machine a couple of times so that the radiologist could use the pictures to mark up my back with the exact position of the biopsy. Then I slid out of the machine but remained on that conveyor bed, on my tummy, for the rest of the procedure (~another 30 minutes, less than 60 total minutes on the conveyor bed). Dr. Radiologist was excellent: very professional, very knowledgeable, and excellent bedside manners. He told me what he was doing before every little thing, and every thing was indeed little: little 5 mm incision, little 16 mm needle, little pressure while drilling through bone, little pain while aspirating bone marrow. In addition to my oral goofy drugs, he did use a few levels of local anesthetic. I would say there was only one time that my pain level raised above 2 (on a scale of 1 to 10, 10 being excruciating), and that pain was more surprising than anything. His nurse was also excellent, and chatting with her and Dr. Rad was very helpful. They complimented my positive demeanor, and I explained that I have learned how important it is to be patient to be a Patient. I proceeded to sing the song of the same name from Elmo goes to the Doctor (sorry--not on youtube or google, but you can probably rent the DVD from your public library). I think that got some chuckles. The real laughs came, however, when the procedure was complete and he was pulling the needle out of my bone. He was tugging very, very, hard for a full 30 seconds and simultaneously trying to talk about something. He started panting as his exertion increased; I told him he didn't have to talk while he was working. The nurse and tech cracked up.
OMG, my food is here. poke tally then I'm out:
I wanted to let you all know that the spine biopsy is over and I am back in my room. It is normally an outpatient procedure, but Dr. Oncologist wants me to eat a meal here before she sends me home. Easiest thing I've done all day, to be sure.
I also wanted to tell you that the spine biopsy was no problemo. I'm rockin' the morphine et al. and was awake the whole time. I'm super with it, I just feel about 2-beers drunk and a little bit fancy. I want to document this experience on the blog because I might not remember it in the future (thank you, morphine).
I was very brave and kept my nerves under control. I laid down on a conveyor bed and slid in and out of the CT scanning machine a couple of times so that the radiologist could use the pictures to mark up my back with the exact position of the biopsy. Then I slid out of the machine but remained on that conveyor bed, on my tummy, for the rest of the procedure (~another 30 minutes, less than 60 total minutes on the conveyor bed). Dr. Radiologist was excellent: very professional, very knowledgeable, and excellent bedside manners. He told me what he was doing before every little thing, and every thing was indeed little: little 5 mm incision, little 16 mm needle, little pressure while drilling through bone, little pain while aspirating bone marrow. In addition to my oral goofy drugs, he did use a few levels of local anesthetic. I would say there was only one time that my pain level raised above 2 (on a scale of 1 to 10, 10 being excruciating), and that pain was more surprising than anything. His nurse was also excellent, and chatting with her and Dr. Rad was very helpful. They complimented my positive demeanor, and I explained that I have learned how important it is to be patient to be a Patient. I proceeded to sing the song of the same name from Elmo goes to the Doctor (sorry--not on youtube or google, but you can probably rent the DVD from your public library). I think that got some chuckles. The real laughs came, however, when the procedure was complete and he was pulling the needle out of my bone. He was tugging very, very, hard for a full 30 seconds and simultaneously trying to talk about something. He started panting as his exertion increased; I told him he didn't have to talk while he was working. The nurse and tech cracked up.
OMG, my food is here. poke tally then I'm out:
"port" 22
right arm 7
tummy 6
left arm 6
left breast 1
superior vena cava 1
T9 vertebral body 1
Ta-da! My amazing disappearing platelet trick
Allow me to draw your attention to this bag of yellow, single-donor platelets I hold in my left hand. These platelets are going to be eased by gravity into my port early Monday evening because as of Monday morning my platelets remain too low for the spine biopsy on Tuesday (today). Watch as the platelet bag becomes empty, and watch as the nurse draws my blood to monitor my post-transfusion platelet level. Wait for it, wait 30 minutes to discover my new platelet value, here comes my fancy trick <envision my magic sparkle jazz hands here>--ta-da! My platelets are lower than before the transfusion! Isn't that fancy? Did I dazzle you with my magic, or did you miss it? Here, let me do it again. This time it is after midnight, and I pre-medicate with tylenol, benadryl, and a steroid to help protect the platelets. Again, I present to you a bag of single-donor platelets hanging from a stainless steel hook. Again we draw some blood to test for all sorts of goofy things: antibodies against the platelets, some heparin-related disorder (this is the substance that is injected to hang out in my port when my port is not in use), some other crud, and platelet levels. I wave my magic sparkle jazz hands and--ta-da! My platelets again are lower than before! I am so amazing. But I'm not done yet, oh no. Now it's 6 am and I will attempt a bag of multi-donor platelets. I pre-medicate, the platelets infuse slowly, I release some blood, and...can I have it quiet in the audience, please? <drumroll> My platelets are up! I guess I'm not a very good magician, but oh heavens am I relieved to be able to receive platelets and to have the spine biopsy today.
My platelets are still not to the threshold that my oncologist would like (100), but they are above the threshold the radiologist/spine surgeon would like (50). I therefore received yet another bag of multi-donor platelets about an hour ago, and we'll send a sample of my blood to the lab any minute now. Outlook is good for the spine biopsy today, probably early afternoon. We are very curious about my amazing disappearing platelet trick, but because my body accepted the multi-donor platelets it is no longer an acute thing to worry about.
I spoke with the radiologist this morning, and here's a sketch of the procedure: make me goofy with drugs but don't put me under, insert needle through the skin at T9 vertebral body using some window that is naturally present in the spine, manually drill a hole through a bit of bone, take a sample of marrow, wait for results (some results could come as early as today and as late as in 2 days). As I've been verbalizing this week to geographically proximal folks, there's no middle ground for the results. They will either be huge-sigh-of-relief results because I have a mild injury and T9 is simply healing, or they will be sob-on-a-loved-one's-shoulder results because I have a tumor in T9 that managed to grow DURING general mitotic inhibitor chemotherapy. Either way, I'm sure I will curse. The word choice will be dictated by the nature of the news.
I am surprisingly calm, possibly because I am hungry and dehydrated (nothing to eat or drink since midnight). I am positively delighted to be moving forward and getting answers regarding T9. This platelet thing has been inconvenient at worst, painless at best. My recovery after the biopsy is supposed to be only 3-4 hours, so I should be home tonight. If I'm lucid, I'll post and tell you how it went, otherwise I'll wait until I have some results to share. Hopefully the good kind.
My platelets are still not to the threshold that my oncologist would like (100), but they are above the threshold the radiologist/spine surgeon would like (50). I therefore received yet another bag of multi-donor platelets about an hour ago, and we'll send a sample of my blood to the lab any minute now. Outlook is good for the spine biopsy today, probably early afternoon. We are very curious about my amazing disappearing platelet trick, but because my body accepted the multi-donor platelets it is no longer an acute thing to worry about.
I spoke with the radiologist this morning, and here's a sketch of the procedure: make me goofy with drugs but don't put me under, insert needle through the skin at T9 vertebral body using some window that is naturally present in the spine, manually drill a hole through a bit of bone, take a sample of marrow, wait for results (some results could come as early as today and as late as in 2 days). As I've been verbalizing this week to geographically proximal folks, there's no middle ground for the results. They will either be huge-sigh-of-relief results because I have a mild injury and T9 is simply healing, or they will be sob-on-a-loved-one's-shoulder results because I have a tumor in T9 that managed to grow DURING general mitotic inhibitor chemotherapy. Either way, I'm sure I will curse. The word choice will be dictated by the nature of the news.
I am surprisingly calm, possibly because I am hungry and dehydrated (nothing to eat or drink since midnight). I am positively delighted to be moving forward and getting answers regarding T9. This platelet thing has been inconvenient at worst, painless at best. My recovery after the biopsy is supposed to be only 3-4 hours, so I should be home tonight. If I'm lucid, I'll post and tell you how it went, otherwise I'll wait until I have some results to share. Hopefully the good kind.
Tuesday, February 22, 2011
A plan for the second quarter
Today I had an appointment with a surgical oncologist in at the University of Iowa hospitals and clinics. She specializes in breast surgery and is quite wonderful. I brought files totaling the size of a dictionary, and she and her resident carefully went over everything. Without hesitation the most aggressive surgery was decided: left mastectomy with full lymph node resection. I thought that the most aggressive surgery plan would include the right breast, or at least lymph node mapping on the right, but she disagreed. There is no evidence from the PET or MRI scans that there is anything wrong with the right breast. She said that she'd prefer to focus my healing energy on the diseased breast, or the region remaining after the removal of the diseased breast, and this seems like sound logic to me. Since reconstruction of my left breast is not possible in conjunction with the mastectomy (because it's inflammatory cancer, because I might need a skin graft as it is [lots of affected skin has got to go], because I still need to do radiation), I can always opt for mastectomy + reconstruction of the right breast at the potential future date of reconstruction of the left breast. This is fine with me. Emotionally, I could have handled loosing both breasts at this time, but keeping the right one won't increase my nervousness about metastatic disease. T9 has pushed that emotional limit already. And what is "at this time?" Monday, March 7th. I will be in the hospital at least one night. I will spare other gorey details at this time. I'm sure they will all be revealed in due course, unless I am suddenly overcome with modesty.
So what of the T9 vertebral biopsy? Still up in the air. I received a call from the nurse at 3pm with yet another question from the radiologist. We'll talk with Dr. Oncologist at chemotherapy tomorrow and come up with a new plan for that biopsy--before or after the mastectomy? Here in town or in Iowa City? I am happy to report that I am no longer loosing sleep over it. What will be will be. In the meantime, I have diverted some of my healing powers from the left breast to T9, and Uncle Rod's famous lentil soup will help strengthen those healing powers. So delicious!!!
I probably haven't answered all of your questions, but I am SOOO done thinking about this crap for the day. Just ask questions in the comments and I'll answer them in the next post. Time to go jump on the bed, brush my teeth with princess toothpaste, and read Hand Hand Fingers Thumb before I fall asleep. Now.
So what of the T9 vertebral biopsy? Still up in the air. I received a call from the nurse at 3pm with yet another question from the radiologist. We'll talk with Dr. Oncologist at chemotherapy tomorrow and come up with a new plan for that biopsy--before or after the mastectomy? Here in town or in Iowa City? I am happy to report that I am no longer loosing sleep over it. What will be will be. In the meantime, I have diverted some of my healing powers from the left breast to T9, and Uncle Rod's famous lentil soup will help strengthen those healing powers. So delicious!!!
I probably haven't answered all of your questions, but I am SOOO done thinking about this crap for the day. Just ask questions in the comments and I'll answer them in the next post. Time to go jump on the bed, brush my teeth with princess toothpaste, and read Hand Hand Fingers Thumb before I fall asleep. Now.
Friday, February 18, 2011
Asparagus smoothies, anyone?
My T9 vertebral body, which is a bone in my spine, is special. It is glowing on the PET scan, it is darkened on the MRI scan. The question seems to be not "if" it's metastatic cancer, but "what kind" of metastatic cancer is it, although Dr. O put it out there that an injury would visualize similarly (if only I were injured!!!!). She wants to biopsy it to get more information about the receptors on the cells in that area. She only trusts one person in town to do it, and they are unavailable until the end of the month, so I am to pursue this biopsy with the surgeon in Iowa City on Tuesday. Apparently you can just jam a needle into the vertebrae and take a sample that way. Fantastic.
Some good news is that the breast cancer responded beautifully to the chemotherapy. Everything that was big is now small. With the distractions of T9, we didn't even discuss the fate of the healthy right breast, although I'm sure that the existence of T9 cements the fate of the right breast (bye bye, babe). Additional good news is that metastatic disease had been my biggest fear, so now I'm free to proceed fearlessly. The bad news is that my chemotherapy regime was designed to counter metastatic disease, so the question remains why it more or less failed. The bright side of the bad news is that my brain, lungs, and liver are still clear, as cancer there would be the worst possible news. There are still treatment options that come with today's bad news, although I don't yet know what they are and they will be dependent on the biopsy results.
It's high time I started to help out my oncologist. She is working hard to make me better, but am I working hard enough? I'm a vegetarian and I'm active, but I don't eat broccoli EVERY day and I don't exercise EVERY day. Time to research and adopt an anti-cancer diet and lifestyle. It's something I can do, and it's important not to feel helpless, although reality certainly seems to be moving in that direction.
Some good news is that the breast cancer responded beautifully to the chemotherapy. Everything that was big is now small. With the distractions of T9, we didn't even discuss the fate of the healthy right breast, although I'm sure that the existence of T9 cements the fate of the right breast (bye bye, babe). Additional good news is that metastatic disease had been my biggest fear, so now I'm free to proceed fearlessly. The bad news is that my chemotherapy regime was designed to counter metastatic disease, so the question remains why it more or less failed. The bright side of the bad news is that my brain, lungs, and liver are still clear, as cancer there would be the worst possible news. There are still treatment options that come with today's bad news, although I don't yet know what they are and they will be dependent on the biopsy results.
It's high time I started to help out my oncologist. She is working hard to make me better, but am I working hard enough? I'm a vegetarian and I'm active, but I don't eat broccoli EVERY day and I don't exercise EVERY day. Time to research and adopt an anti-cancer diet and lifestyle. It's something I can do, and it's important not to feel helpless, although reality certainly seems to be moving in that direction.
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