Thursday, September 25, 2008
If It's Tuesday, I Must Be Bulgin'
I put off having a paracentesis until this week because it didn't seem so bad last week. By last Thursday I was feeling pretty uncomfortable. So I arranged it for Tuesday, which at least had me on the same day as infusion (only one day at the hospital) but I wish I had goon sooner!
Man, do I feel better.
At my regular appointment, I found out that my tumor markers are nearly half what they were (Yay, Gemzar). No word yet on the ctc test, which has to be sent out for analysis. The last number I saw (in August) was alarming in light of the "key" below on the sheet, which indicated when ctc is used for prognostic purposes, any number higher than 5 indicates overall survival of 4.1 months. My number was 19. I have exceeded the "prognosis" by three years, so I'm not sure I can treat that number as anything more than a snapshot from a trend like the other numbers.
Months. Bah.
It wasn't enough to dampen my thrill at the other markers AND my liver counts, which are approaching normal. Maybe soon the ascites build up will slow down and I won't have to be poked and drained anymore--or at least not as frequently.
w00t!
Man, do I feel better.
At my regular appointment, I found out that my tumor markers are nearly half what they were (Yay, Gemzar). No word yet on the ctc test, which has to be sent out for analysis. The last number I saw (in August) was alarming in light of the "key" below on the sheet, which indicated when ctc is used for prognostic purposes, any number higher than 5 indicates overall survival of 4.1 months. My number was 19. I have exceeded the "prognosis" by three years, so I'm not sure I can treat that number as anything more than a snapshot from a trend like the other numbers.
Months. Bah.
It wasn't enough to dampen my thrill at the other markers AND my liver counts, which are approaching normal. Maybe soon the ascites build up will slow down and I won't have to be poked and drained anymore--or at least not as frequently.
w00t!
Labels: ascites, Gemzar, liver, paracentesis, tumor marker
Friday, November 30, 2007
Time to Deck the Halls
I don't actually have anything groundbreaking to report, except that I spend far too much time doing silly things with PhotoShop for this blog.
I don't know what my marker counts were last Tuesday, as I tend to not show up for the blood draw as early as I am supposed to, and the reports are never ready by the time I have my appointment. Of course I sat at the hospital for several hours waiting for my actual infusion (it always takes forever at Ann Arbor...I don't really know why), but the reports weren't ready when the nurse gave me a copy of the labs. Go figure.
Since I feel great and my liver function looks good, my December will not be wrecked with scans.
I need to start decorating for Christmas soon. Brian has no idea what he is in for, never having seen the results of a total Janet festoon-spree. I need to box up the trinkets that are currently laid out so that I can put out my penguins, snowglobes, candles, Star Wars Hallmark ornaments, stockings, Breyer holiday horses, more penguins, snowmen, and the actual el-fake-O tree itself. I need new lights for the tree since the lights went wonky last year and the top half refused to stay lit.
I hope the condo doesn't burn down.
I also have Christmas cookie jars, salt and pepper shakers, and special dishes and glasses I will start putting into the cabinet. I've got wreaths, fiber optic things, angels, and have even been known to wrap my framed pictures with wrapping paper and bows for the season.
Feel free to come on over; if I manage to bake cookies this year, you're welcome to have some.
I don't know what my marker counts were last Tuesday, as I tend to not show up for the blood draw as early as I am supposed to, and the reports are never ready by the time I have my appointment. Of course I sat at the hospital for several hours waiting for my actual infusion (it always takes forever at Ann Arbor...I don't really know why), but the reports weren't ready when the nurse gave me a copy of the labs. Go figure.
Since I feel great and my liver function looks good, my December will not be wrecked with scans.
I need to start decorating for Christmas soon. Brian has no idea what he is in for, never having seen the results of a total Janet festoon-spree. I need to box up the trinkets that are currently laid out so that I can put out my penguins, snowglobes, candles, Star Wars Hallmark ornaments, stockings, Breyer holiday horses, more penguins, snowmen, and the actual el-fake-O tree itself. I need new lights for the tree since the lights went wonky last year and the top half refused to stay lit.
I hope the condo doesn't burn down.
I also have Christmas cookie jars, salt and pepper shakers, and special dishes and glasses I will start putting into the cabinet. I've got wreaths, fiber optic things, angels, and have even been known to wrap my framed pictures with wrapping paper and bows for the season.
Feel free to come on over; if I manage to bake cookies this year, you're welcome to have some.
Labels: Brian, Christmas, Christmas tree, liver, tumor marker
Tuesday, November 06, 2007
Groovy, Man.
We had a visit with Lita today. Dr. Hayes is often traveling, accepting awards and presenting papers and what not, so I don't actually see him that frequently. It's the price to be paid for having a rock-star oncologist (and by that I mean a very renowned expert in the field of breast cancer), but Lita can handle things just fine.
I'm feeling great, aside from a few residual digestive issues, which may be lingering aftereffects from the Avastin, so I should be mindful but not paranoid. I have no pain anywhere, which is pretty astonishing in light of where I was two years ago.
The EKG I had recently showed that my heart is better than normal. Even if I were to suffer some loss of function from the Adriamycin, it would do just fine. There is a lifetime limit on Adriamycin because it does cause heart damage, but according to Lita, if it does well and keeps me stable, it may be possible to take "heart protecting" drugs to be able to prolong its use.
She also said that I was looking great, and wanted to know what was different. Had I done my eyebrows differently, or something? I said that I've been wearing the blonde wig a lot, and today's was brown. I didn't mention (although this could also be a factor) that I've lost about ten pounds and am nearly in the weight range that was "normal" for me--without having to exert special effort--when I was healthy. I dunno. I just FEEL better. I've been chipper and snarky (to Brian's chagrin, no doubt).
We walked in the door today after coming home from infusion just in time to answer Lita's phone call: she had my lab results which weren't available at the appointment. My CA15.something-or-other test shows that my tumor markers have dropped about forty points. The CEA test (also for tumor markers) blipped up a little bit, but it is Lita's opinion that the CA15 is more specific to breast cancer and therefore more important. I'm pretty happy with that. She also said my liver function was "much improved," which is pretty groovy.
November 5 was the four-year anniversary of my mastectomy. October 30 was the two-year anniversary of being diagnosed with metastatic disease. This could be a depressing time of year if I wasn't feeling so terrific. I got good news, I got my energy back. I'm bald and gimpy, but you can't have everything.
I'm feeling great, aside from a few residual digestive issues, which may be lingering aftereffects from the Avastin, so I should be mindful but not paranoid. I have no pain anywhere, which is pretty astonishing in light of where I was two years ago.
The EKG I had recently showed that my heart is better than normal. Even if I were to suffer some loss of function from the Adriamycin, it would do just fine. There is a lifetime limit on Adriamycin because it does cause heart damage, but according to Lita, if it does well and keeps me stable, it may be possible to take "heart protecting" drugs to be able to prolong its use.
She also said that I was looking great, and wanted to know what was different. Had I done my eyebrows differently, or something? I said that I've been wearing the blonde wig a lot, and today's was brown. I didn't mention (although this could also be a factor) that I've lost about ten pounds and am nearly in the weight range that was "normal" for me--without having to exert special effort--when I was healthy. I dunno. I just FEEL better. I've been chipper and snarky (to Brian's chagrin, no doubt).
We walked in the door today after coming home from infusion just in time to answer Lita's phone call: she had my lab results which weren't available at the appointment. My CA15.something-or-other test shows that my tumor markers have dropped about forty points. The CEA test (also for tumor markers) blipped up a little bit, but it is Lita's opinion that the CA15 is more specific to breast cancer and therefore more important. I'm pretty happy with that. She also said my liver function was "much improved," which is pretty groovy.
November 5 was the four-year anniversary of my mastectomy. October 30 was the two-year anniversary of being diagnosed with metastatic disease. This could be a depressing time of year if I wasn't feeling so terrific. I got good news, I got my energy back. I'm bald and gimpy, but you can't have everything.
Labels: Adriamycin, Avastin, baldness, Brian, Dr. Hayes, Lita, liver, tumor marker, wigs
Monday, September 10, 2007
Barfium, and also a Baxter Update
I am once again going for scans tomorrow. This is icky for a variety of reasons: first, barium is nasty and careens through the digestive system like a foamy, liquid freight train. I call it "barfium." Secondly: they scheduled my CT scan for 3pm, ensuring that I will be as hungry and cranky as possible. Thirdly: I had my last scan not so long ago and am dismayed that my liver counts and tumor marker counts appear to warrant scans again so soon.
I tried to ask for the kind of barium preparation that is a powder and can be mixed with clear liquid (like water or fruit juice), but Lita was extremely skeptical about whether our equipment is able to detect that particular kind of barium. Who knew that the stuff they make you chug or that they squirt into you might be hardware-specific? I never followed up on this so will be drinking two large cups of berry-flavored foam that weigh five pounds each tomorrow around 2:00.
I hate that my scan was scheduled for the afternoon. I will be able to eat breakfast, but not lunch. I get very cranky (and fatigued and become filled with low blood sugar-induced despair) when I can't eat lunch. If the scan were in the morning, I wouldn't mind because I'm used to fasting over night. As it is, I will get more and more irritated and crabby as the day wears on, and I have already apologized to my mom (who will be accompanying me to the appointment) for the fact that I will probably be very unpleasant company. The bone scan injection is at 4, then I have to come back at 8. To make things even more "convenient," the person who did the scheduling attempted to switch my infusion to noon.
That's right--I get chemo the same day. My appointment was at 9, so I planned to enjoy a muffin and relax at the Canton center, where it's very pleasant, low-key, and Brian and I can watch dvds without being cramped in to a huge assembly line of sick people. Switching the appointment to noon does not make it better. I'd have trouble getting from Canton to the hospital in time, and would completely miss out on the most excellent baked goods. I guess they were thinking that grouping things together would disrupt my day less, but I really don't need my day to be a solid mass of medical procedure, thank you. I'm happy to stagger things. Even the 3-4 hour gap between the injection and the bone scan is ok--it will give me time to go have dinner with my mom (or at least allow her to frantically acquire some chicken nuggets from a drive-thru to stuff into my mouth before she has to strangle me).
Results should be available Thursday morning. I certainly don't want bad news, although more of the same results will be disquieting, too. I don't want to just barely hang on, I want to see improvement. I'd love to have things knocked back to a degree where I could go on another chemo vacation.
Baxter is also going for medical treatment tomorrow. He is having a very special operation. I've tried to tell him that this is the consequence for "marking" the furniture in the living room, but we were going to have him fixed anyway. I have decided he is no longer allowed on the sofa and chair, except by invitation. It can be very disconcerting to have a 15 pound puppy suddenly flying at you from the ottoman, and since he seems to have the idea that the sofa and chair are HIS territory, he needs to be disabused of this notion. So far it's going reasonably well. He keeps trying, but we keep pre-empting his leaps to the sofa and squirting him with water when necessary. Oddly, he's been more pleasant in general since he's not allowed free access to the furniture.
The lesson here is that pets need boundaries. They also need to have their grown-up parts removed for the greater good.
Does anybody know of a really effective pet-odor neutralizer? I've been using one that says it has "enzyme action," but I'm dissatisfied.
I tried to ask for the kind of barium preparation that is a powder and can be mixed with clear liquid (like water or fruit juice), but Lita was extremely skeptical about whether our equipment is able to detect that particular kind of barium. Who knew that the stuff they make you chug or that they squirt into you might be hardware-specific? I never followed up on this so will be drinking two large cups of berry-flavored foam that weigh five pounds each tomorrow around 2:00.
I hate that my scan was scheduled for the afternoon. I will be able to eat breakfast, but not lunch. I get very cranky (and fatigued and become filled with low blood sugar-induced despair) when I can't eat lunch. If the scan were in the morning, I wouldn't mind because I'm used to fasting over night. As it is, I will get more and more irritated and crabby as the day wears on, and I have already apologized to my mom (who will be accompanying me to the appointment) for the fact that I will probably be very unpleasant company. The bone scan injection is at 4, then I have to come back at 8. To make things even more "convenient," the person who did the scheduling attempted to switch my infusion to noon.
That's right--I get chemo the same day. My appointment was at 9, so I planned to enjoy a muffin and relax at the Canton center, where it's very pleasant, low-key, and Brian and I can watch dvds without being cramped in to a huge assembly line of sick people. Switching the appointment to noon does not make it better. I'd have trouble getting from Canton to the hospital in time, and would completely miss out on the most excellent baked goods. I guess they were thinking that grouping things together would disrupt my day less, but I really don't need my day to be a solid mass of medical procedure, thank you. I'm happy to stagger things. Even the 3-4 hour gap between the injection and the bone scan is ok--it will give me time to go have dinner with my mom (or at least allow her to frantically acquire some chicken nuggets from a drive-thru to stuff into my mouth before she has to strangle me).
Results should be available Thursday morning. I certainly don't want bad news, although more of the same results will be disquieting, too. I don't want to just barely hang on, I want to see improvement. I'd love to have things knocked back to a degree where I could go on another chemo vacation.
Baxter is also going for medical treatment tomorrow. He is having a very special operation. I've tried to tell him that this is the consequence for "marking" the furniture in the living room, but we were going to have him fixed anyway. I have decided he is no longer allowed on the sofa and chair, except by invitation. It can be very disconcerting to have a 15 pound puppy suddenly flying at you from the ottoman, and since he seems to have the idea that the sofa and chair are HIS territory, he needs to be disabused of this notion. So far it's going reasonably well. He keeps trying, but we keep pre-empting his leaps to the sofa and squirting him with water when necessary. Oddly, he's been more pleasant in general since he's not allowed free access to the furniture.
The lesson here is that pets need boundaries. They also need to have their grown-up parts removed for the greater good.
Does anybody know of a really effective pet-odor neutralizer? I've been using one that says it has "enzyme action," but I'm dissatisfied.
Labels: barium, Baxter, bone scan, Brian, CT scan, Lita, mom, tumor marker
Thursday, August 30, 2007
Waiting
My scans before I left to go on vacation were inconclusive. My tumor markers had blipped up, my liver functions had blipped up, the scans showed possible new activity in the thoracic spine and possibly the dome of the liver, but Dr. Hayes' advice was to wait and see how the next round of blood tests went, since my numbers have blipped up in the past only to blip back down again.
This week the lab screwed up and didn't take all the appropriate vials of blood, so I had to drive to the hospital early this morning to get poked so that Lita can call me with the tumor counts and liver enzyme numbers.
It may be that I am coming to the end of my relationship with Abraxane. If my numbers keep going up, I will get to go through the scans again before next month's appointment with Dr. Hayes.
There are other drugs I might try instead, like Xeloda or Navelbine. I've been on Abraxane for approximately a year, which Dr. Hayes says is about to be expected. If the chemo drugs are only going to be effective for a year, I sure hope they keep crankin' new ones out.
This week the lab screwed up and didn't take all the appropriate vials of blood, so I had to drive to the hospital early this morning to get poked so that Lita can call me with the tumor counts and liver enzyme numbers.
It may be that I am coming to the end of my relationship with Abraxane. If my numbers keep going up, I will get to go through the scans again before next month's appointment with Dr. Hayes.
There are other drugs I might try instead, like Xeloda or Navelbine. I've been on Abraxane for approximately a year, which Dr. Hayes says is about to be expected. If the chemo drugs are only going to be effective for a year, I sure hope they keep crankin' new ones out.
Labels: Abraxane, bone scan, CT scan, Dr. Hayes, Lita, liver, Navelbine, tumor marker, Xeloda
Friday, March 30, 2007
Impending Scans and a Departure
Blood test results show one tumor marker down (yay!), one blipped up somewhat (boo!) and my liver function tests show some results that are of enough concern to warrant a new battery of scans, including a bone scan and the ever-popular Barium Barrage, or "CT with contrast" (%$#@!).
I contacted Lita to find out about getting a "power port" but changed my mind when speaking to the scheduling people, who indicated that a power port has to go in the chest and cannot be placed in the arm.
For now I am going to have to live with the agonizing jabby-jab-jab of IV placement for the contrast dye.
Also, I absolutely must resume the Neupogen shots, which are for the purpose of boosting white blood cell counts and feeling like one is being stung by a bee without having to go outside or risk exposure to pollen. And a significant portion of my remaining twelve hairs have decided to shuffle off the mortal coil that is my head.
I contacted Lita to find out about getting a "power port" but changed my mind when speaking to the scheduling people, who indicated that a power port has to go in the chest and cannot be placed in the arm.
For now I am going to have to live with the agonizing jabby-jab-jab of IV placement for the contrast dye.
Also, I absolutely must resume the Neupogen shots, which are for the purpose of boosting white blood cell counts and feeling like one is being stung by a bee without having to go outside or risk exposure to pollen. And a significant portion of my remaining twelve hairs have decided to shuffle off the mortal coil that is my head.
Labels: baldness, barium, blood tests, bone scan, CT scan, hair, IV, Lita, Neupogen, port, tumor marker
Tuesday, January 16, 2007
Ok, Break's Over: now where did I put that mandible?
It was nice while it lasted.
I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.
So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.
I got my results today.
The Good News
My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.
What a difference a year makes.
The Bad News
The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.
Alas, this also does mean I have to resume enduring Neupogen shots. :(
The Freaky News
Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.
Yuck.
They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.
Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.
I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.
So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.
I got my results today.
The Good News
My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.
What a difference a year makes.
The Bad News
The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.
Alas, this also does mean I have to resume enduring Neupogen shots. :(
The Freaky News
Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.
Yuck.
They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.
Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.
Labels: Abraxane, Avastin, barium, blood tests, bone scan, Brian, chemo, CT scan, Dr. Hayes, hospital, Lita, liver, metastasis, Neupogen, tumor marker, Zometa
Saturday, December 23, 2006
Marker Update
Lita called the other day with my test results: my tumor markers appear to be almost identical to last time. I have a couple of liver test results that are wonky, but overall things are great. This means for at least one more month, I will be able to remain chemo-free.
\o/
\o/
Labels: blood tests, chemo, Lita, liver, tumor marker
Friday, July 14, 2006
The Difference Between Bowling and Mini-Golf
Aside from the fact that the ball size is totally different and that I completely suck at bowling (the last time I bowled I received a score of 19, due only to the scorekeeper's accidentally counting three pins twice), whereas I have been known to once in a while eke out a victory in my annual Martha's Vineyard mini-golf game, the scoring is exactly the opposite.
In bowling, you want your score to be as high as possible with as many strikes as you can get. With mini-golf, you want your score to be low as it can be.
I have printouts from the hospital showing results of various blood tests--which they have to do before determining whether I'm healthy enough to receive this week's dose of chemotherapy--and the array of things monitored is dizzying. There are white blood cell counts, various chemical counts, red blood cell counts, tumor antigen counts, things related to liver function, and I have one sheet listing I-don't-even-know-what.
The two major numbers that I've been paying attention to are the white blood cell count and the tumor antigen count. You want to have a high enough white blood cell count to be able to fight off infection, otherwise they will not administer the chemotherapy because it is just too risky. If you can't bowl, they won't let you in the league. So Brian has been administering subcutaneous Neupogen shots at home (which is hysterically funny for anyone who knows how much I just love needles) the four days after my chemo treatment. So far it's been working. The tumor marker count is like your minigolf score: the lower, the better. On my sheet, it started out around 55 in November and reached a high of over 200 before starting to go down.
Anyway, Lita called the other day and told Brian we are to celebrate because the numbers are all going in the direction they should be (also, the test results show that my liver function is almost back to normal, but that doesn't fit into my stupid analogy). I don't know how the numbers compare right now to what is on the printouts, because Brian couldn't find the sheets and didn't write down what Lita told him.
I am cautiously optimistic about the tumor counts. I'm not sure it will ever be possible to make it under par, but lowering my score at all is a good thing.
In bowling, you want your score to be as high as possible with as many strikes as you can get. With mini-golf, you want your score to be low as it can be.
I have printouts from the hospital showing results of various blood tests--which they have to do before determining whether I'm healthy enough to receive this week's dose of chemotherapy--and the array of things monitored is dizzying. There are white blood cell counts, various chemical counts, red blood cell counts, tumor antigen counts, things related to liver function, and I have one sheet listing I-don't-even-know-what.
The two major numbers that I've been paying attention to are the white blood cell count and the tumor antigen count. You want to have a high enough white blood cell count to be able to fight off infection, otherwise they will not administer the chemotherapy because it is just too risky. If you can't bowl, they won't let you in the league. So Brian has been administering subcutaneous Neupogen shots at home (which is hysterically funny for anyone who knows how much I just love needles) the four days after my chemo treatment. So far it's been working. The tumor marker count is like your minigolf score: the lower, the better. On my sheet, it started out around 55 in November and reached a high of over 200 before starting to go down.
Anyway, Lita called the other day and told Brian we are to celebrate because the numbers are all going in the direction they should be (also, the test results show that my liver function is almost back to normal, but that doesn't fit into my stupid analogy). I don't know how the numbers compare right now to what is on the printouts, because Brian couldn't find the sheets and didn't write down what Lita told him.
I am cautiously optimistic about the tumor counts. I'm not sure it will ever be possible to make it under par, but lowering my score at all is a good thing.
Labels: blood tests, Brian, chemo, Lita, liver, Neupogen, tumor antigen, tumor marker, white blood cell
Wednesday, March 22, 2006
Appointments and CT scans and MRIs, Oh My!
This week I had the veritable motherlode of appointments. I had my usual blood draw/oncology team visit/infusion & pellet injection on Tuesday. I made sure to bring pictures of the wedding with me to show Lita, the Oncology nurse practitioner, who demanded them last time. (I also tossed in some of the wedding favors Brian's mom put together for her and Dr. Hayes.)
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.
We did not get to go in early.
They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.
We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.
We waited, and waited, and waited....
My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.
Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.
When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)
This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.
So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.
I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.
They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.
The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?
I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.
Labels: brain scan, Brian, CT scan, Dr. Hayes, Dr. Rodriguez, infusion, injection, Lita, mom, MRI, nausea, physical therapy, star trek, tumor marker, wedding
