Monday, April 29, 2002
Friday I finished my first full week of radiation; because of the limited field (surgical site only), my side effects have been unnoticeable. I'm still recovering from the chemo, with low white and red cell counts. My white cell count has actually gone down a bit, too, (2900, down from 4100) but the radiation oncologists aren't too concerned. I was getting a sore throat over the weekend, so they had me take the prophylactic antibiotics (that phrase just cracks me up!) left over from chemotherapy and I feel much better.
Kevin's sister Linda has been here taking care of me, which is a good thing since my parents went back to Texas to see their newest grandchild (Kelci Rae) and Kevin went to Chicago on his job hunt. Conor is very taken with his Aunt Linda and we've had lots of fun together.
As part of my radiation therapy, they build these shields to direct the radiation to the precise spot. They're little metal boxes with a shape (in my case, it looks like a wrinkly kidney bean) cut out of one end and an open end on the other. They're mounted on the X-ray machine for my treatments. I get radiated from the top right and bottom left, so I have two of them. Well, all week long the one on the top right (the only one I can see) said "McNamara LAO". On Friday, it said "McNamara RAO". As I laid there getting radiated I realized that the 'L' and 'R' probably stood for 'left' and 'right' and I kept thinking that they'd made a mistake, that the wrong one was in place and very bad things would result but these were professionals and they know what they're doing so I should just shut up and let them do they're job. But I couldn't. So I asked and was told that it does stand for left and right, but that the right one had been mis-labeled (they both said left). And I felt better until I realized that the folks using them were smart enough to tell them apart but, apparently, not the people who MADE THEM. I just wonder when I'm going to start glowing.
Kevin's sister Linda has been here taking care of me, which is a good thing since my parents went back to Texas to see their newest grandchild (Kelci Rae) and Kevin went to Chicago on his job hunt. Conor is very taken with his Aunt Linda and we've had lots of fun together.
As part of my radiation therapy, they build these shields to direct the radiation to the precise spot. They're little metal boxes with a shape (in my case, it looks like a wrinkly kidney bean) cut out of one end and an open end on the other. They're mounted on the X-ray machine for my treatments. I get radiated from the top right and bottom left, so I have two of them. Well, all week long the one on the top right (the only one I can see) said "McNamara LAO". On Friday, it said "McNamara RAO". As I laid there getting radiated I realized that the 'L' and 'R' probably stood for 'left' and 'right' and I kept thinking that they'd made a mistake, that the wrong one was in place and very bad things would result but these were professionals and they know what they're doing so I should just shut up and let them do they're job. But I couldn't. So I asked and was told that it does stand for left and right, but that the right one had been mis-labeled (they both said left). And I felt better until I realized that the folks using them were smart enough to tell them apart but, apparently, not the people who MADE THEM. I just wonder when I'm going to start glowing.
Tuesday, April 23, 2002
Monday was my second radiation tratment, although they're still working on getting the setup right. Turns out that only the surgical site will be radiated; the radiation oncologist said that after the Stanford V chemo, they typically don't radiate anything that's less than 5mm. The lymph node under my arm was 3mm, and a "suspicious" node in the center of my chest was also well under 5mm. (Neither Kevin nor I remember anyone mentioning the suspicious one in the chest.) In any case, both were taken care of by the chemo and won't be radiated. The best part about not getting the lymph node under my arm radiated is that I can keep wearing anti-perspirant! (Summer's coming, and even though this is San Francisco, it still gets warm.) Of course, the other bonus is that the less you have radiated, the less chance of side effects. Radiation is bad stuff, and the bigger the field to be radiated, the more things that you don't want radiated can get caught in the line of fire. I can't imagine how other patients who have to have lymph nodes radiated do and I'm very glad we caught my cancer early enough so I don't have to find out.
I'm still working on growing hair--okay, I'm obsessing about growing hair. (My mom says I look like Reddy Kilowatt.) I have a decent one day stubble, but no one can see it because my scalp still outshines any hair I have. There are a few hairs growing faster than that, so if you look veeery closely (and I do), you can see these 1/4" hairs sprouting out. I'm getting tired of hats, and I stink at tying scarves. (If it wasn't for the great hats Cindy sent me, well, I'd be in real trouble!) Whenever I wear a scarf I look like a cancer patient--no one wears a scarf on their head unless they have to. Maybe I'll just start wearing a headscarf and tell people I've converted to Islam.
I'm still working on growing hair--okay, I'm obsessing about growing hair. (My mom says I look like Reddy Kilowatt.) I have a decent one day stubble, but no one can see it because my scalp still outshines any hair I have. There are a few hairs growing faster than that, so if you look veeery closely (and I do), you can see these 1/4" hairs sprouting out. I'm getting tired of hats, and I stink at tying scarves. (If it wasn't for the great hats Cindy sent me, well, I'd be in real trouble!) Whenever I wear a scarf I look like a cancer patient--no one wears a scarf on their head unless they have to. Maybe I'll just start wearing a headscarf and tell people I've converted to Islam.
Friday, April 19, 2002
I took my mom to my hairdresser today. When we got there, she assumed she was cutting my hair, so I showed her that I don't have quite enough hair to require her services. But she said she works with a group of cancer survivors, and my next three haircuts would be free! So if you were wondering, there is an upside to chemotherapy.
After the haircut we went down to Stanford for my first radiation treatment. I went in yesterday for more setup work, and today they were still trying to ensure they were hitting the right spots. It's just the surgical site and a lymph node, so it's a pretty small area. And the radiation doesn't take very long--about 30 - 40 seconds per site. It takes them longer to get me in position. This is quite a change from the chemotherapy, which with the blood work and doctor visits could take all day. We can usually get out within the "first 45 minutes are free" in the parking garage.
After the haircut we went down to Stanford for my first radiation treatment. I went in yesterday for more setup work, and today they were still trying to ensure they were hitting the right spots. It's just the surgical site and a lymph node, so it's a pretty small area. And the radiation doesn't take very long--about 30 - 40 seconds per site. It takes them longer to get me in position. This is quite a change from the chemotherapy, which with the blood work and doctor visits could take all day. We can usually get out within the "first 45 minutes are free" in the parking garage.
Monday, April 15, 2002
We got the results of the CT scan and PET scan--everything looks normal. This is such a relief! In our last visit with the doctor they talked to us about what would happen if things didn't go so well, and they scared the daylights out of me. But I don't have to worry about that now!
I'm still a bit low on white blood cells and severely anemic. Those red blood cells are kind of important if you want to do anything even remotely athletic, like walking up stairs. I'm not so tired anymore, but still pretty weak. I've heard it can take 90 days to build up a red blood cell count, but the medical oncology nurses assure me that I'll be feeling better before then.
This American Life, one of my favorite shows on NPR, has an episode on hospitalization called Hospital Diplomacy that Kevin couldn't believe I was listening to. Especially since I was fresh out of the hospital. Anyway, there were a few things in there that hit home, one from a segment that didn't even make it into the show. Basically this person is saying that sickness doesn't make us a better person because when we're sick all we're trying to do is get back to normal. And I find that that is very true. I don't sit around thinking to the time when I'll be able to help the poor or hike the Appalachian trail or anything else but do whatever it was I did before I got sick. Sure, I toy with the idea of not working, but I know I wouldn't be happy. (And a "helpful" cancer brochure has put the fear of losing my health insurance into me.) Okay, if I had to work full-time or travel or commute to a crappy client I would change my mind, but I really just want to get back to my 30 hour a week job where my biggest fears are getting left behind technically because I'm not working the requisite 60 hours a week. Normal sounds so good to me!
I'm still a bit low on white blood cells and severely anemic. Those red blood cells are kind of important if you want to do anything even remotely athletic, like walking up stairs. I'm not so tired anymore, but still pretty weak. I've heard it can take 90 days to build up a red blood cell count, but the medical oncology nurses assure me that I'll be feeling better before then.
This American Life, one of my favorite shows on NPR, has an episode on hospitalization called Hospital Diplomacy that Kevin couldn't believe I was listening to. Especially since I was fresh out of the hospital. Anyway, there were a few things in there that hit home, one from a segment that didn't even make it into the show. Basically this person is saying that sickness doesn't make us a better person because when we're sick all we're trying to do is get back to normal. And I find that that is very true. I don't sit around thinking to the time when I'll be able to help the poor or hike the Appalachian trail or anything else but do whatever it was I did before I got sick. Sure, I toy with the idea of not working, but I know I wouldn't be happy. (And a "helpful" cancer brochure has put the fear of losing my health insurance into me.) Okay, if I had to work full-time or travel or commute to a crappy client I would change my mind, but I really just want to get back to my 30 hour a week job where my biggest fears are getting left behind technically because I'm not working the requisite 60 hours a week. Normal sounds so good to me!
Thursday, April 11, 2002
Wednesday we went for a PET scan and we didn't even need to bring the cat. Hee hee, a little medical humor. We went back to the same place I got the first one because my brother, who's in the XRay/CT/MRI business, said it would be good to have the subsequent scan done on the same machine. (They don't have a PET scanner at Stanford yet.) So I'm laying down on a Lazy Boy Recliner behind a cubicle partition letting the radioactive stuff they injected me with float through my bloodstream and I hear someone in the waiting room come and stand on the other side of the partition. He was asked to move because the patient on the other side of the partition (that would be me) was radioactive. It doesn't last long, so I never got to see if I was glowing. These folks were also discussing a book I've been trying to get (after hearing about it on NPR) and I wanted to speak up and ask where they got it, but I wasn't supposed to move and since I was radioactive who knows if they would have answered? Besides, I thought, I've got the power of the internet at my disposal! I did find it, via the San Francisco Library web site, too.
Tuesday, April 09, 2002
Monique was in the Bay Area this weekend on a business trip. Of course, when you're in the wine business, a business trip involves visiting beautiful wineries that ply you with four-star food and wine, which is why I often think I'm in the wrong business. When her colleagues flew out Sunday morning, she came to see us. She's a wonderful houseguest--she helps clean out the refrigerator (those pesky leftovers), and she's willing to take a nap with her hostess and drink martinis with Kevin and my dad. She and I even got out for a bit (a la Thelma and Louise without driving off a cliff) and walked along the ocean.
Monday afternoon we went down to Stanford for a CT scan, chest X-ray and blood work. These are three of the four tests that I had at the beginning of chemo; they'll look at them to see how the chemo worked. We got a call Tuesday saying that everything looked good; the CT scan was all clear. I'm very relieved, but still waiting to see what the PET scan tomorrow shows. It's a little more detailed, and I'm a little more paranoid.
The blood work Monday showed that I had 3900 white blood cells, so I'm on my way to having the normal level of 14,000 - 16,000. I feel better, too. Not as tired, but I'm still pretty weak. I can't decide if it's from atrophy or the fact that I'm still very anemic. It'll take a little longer to recover those red blood cells. But I went out and about by myself today, having lunch with my boss from Schwab and then taking the train to meet my mom at the mall.
I'm a little bitter about being anemic. I've been given massive doses of Procrit, this fancy new drug that's supposed to "conquer chemotherapy fatigue" according to their commercials. According to the nurses, it costs thousands of dollars per dose--I've probably had between $25,000 and $50,000 worth and it really hasn't given me anywher near the energy that you'd think given the amount of money they spend to market this stuff. (And I haven't seen a statement from my insurance company yet for this, so I probably haven't even started to get bitter.) But the main thing that kills me is they have commercials, on national television, purporting to show chemotherapy patients engaged in energized activities AND NOT ONE OF THEM IS BALD. Not even one of the men. No one is even wearing a hat. Give me a break--if your chemo is killing enough red blood cells to make you anemic, it's probably making your hair fall out, too!
Yes, I'm still bald. My bangs are still there, so I look like a cue ball with a false eyelash on top. It's not like I'm staring in the mirror every morning and evening, trying to figure out if any new hairs have grown. And it's not that my wonderful husband pointed out last night in bed that the hair on my legs seems to be growing back. But my ears hurt when I wear hats. And they blow off. And I'm not that good at scarves, and even if I was wearing a scarf means, "HEY, I'M BALD!". (I swear that even the people in the Oncology Day Care Center at Stanford stare when you wear a scarf--some with the fear that that's what's they'll look like soon.) I just want enough hair to keep my head warm and hide the shine of my pate. It's San Francisco, I can go out with a crew cut!
Monday afternoon we went down to Stanford for a CT scan, chest X-ray and blood work. These are three of the four tests that I had at the beginning of chemo; they'll look at them to see how the chemo worked. We got a call Tuesday saying that everything looked good; the CT scan was all clear. I'm very relieved, but still waiting to see what the PET scan tomorrow shows. It's a little more detailed, and I'm a little more paranoid.
The blood work Monday showed that I had 3900 white blood cells, so I'm on my way to having the normal level of 14,000 - 16,000. I feel better, too. Not as tired, but I'm still pretty weak. I can't decide if it's from atrophy or the fact that I'm still very anemic. It'll take a little longer to recover those red blood cells. But I went out and about by myself today, having lunch with my boss from Schwab and then taking the train to meet my mom at the mall.
I'm a little bitter about being anemic. I've been given massive doses of Procrit, this fancy new drug that's supposed to "conquer chemotherapy fatigue" according to their commercials. According to the nurses, it costs thousands of dollars per dose--I've probably had between $25,000 and $50,000 worth and it really hasn't given me anywher near the energy that you'd think given the amount of money they spend to market this stuff. (And I haven't seen a statement from my insurance company yet for this, so I probably haven't even started to get bitter.) But the main thing that kills me is they have commercials, on national television, purporting to show chemotherapy patients engaged in energized activities AND NOT ONE OF THEM IS BALD. Not even one of the men. No one is even wearing a hat. Give me a break--if your chemo is killing enough red blood cells to make you anemic, it's probably making your hair fall out, too!
Yes, I'm still bald. My bangs are still there, so I look like a cue ball with a false eyelash on top. It's not like I'm staring in the mirror every morning and evening, trying to figure out if any new hairs have grown. And it's not that my wonderful husband pointed out last night in bed that the hair on my legs seems to be growing back. But my ears hurt when I wear hats. And they blow off. And I'm not that good at scarves, and even if I was wearing a scarf means, "HEY, I'M BALD!". (I swear that even the people in the Oncology Day Care Center at Stanford stare when you wear a scarf--some with the fear that that's what's they'll look like soon.) I just want enough hair to keep my head warm and hide the shine of my pate. It's San Francisco, I can go out with a crew cut!
Saturday, April 06, 2002
Thursday we went in for radiation setup, where they do a limited CT scan to determine exactly what areas to radiate. It's weird that they think of your body in a different plane than everyone else--it reminds me of the Rosanne Barr joke, "What's the fastest way to a man's heart? Through his chest!". They're going to radiate the surgical site and the one lymph node under my arm. The surgical site is right over my heart--the surgeon said he had to put his hand over my heart to avoid cutting it when he was removing the tumor. (Why surgeons tell you this stuff is beyond me.) Anyway, so Kevin asked if there might be damage to my heart from the radiation and he said no, that they were coming in at another angle, from the side. I guess I'll find out exactly where when I go in for my first session.
I know I said I wasn't going to use this as a side effect complaint department, but I have got to admit that I am so tired. I'm off the Prednisone that made me hyper (especially in the middle of the night) and I have a low white cell count and a low red cell count and I feel like I could sleep all day. The radiation oncologist said that a side effect of radiation is fatigue, but as tired as I am now, I probably wouldn't even notice it--it'll be much less debilitating that chemo fatigue. But Kevin and my folks have been here to take care of everything, so I've been taking it easy. We've had folks over for dinner twice and my parents shopped and cooked the meals and cleaned up afterward. It's so nice to be pampered like this.
I know I said I wasn't going to use this as a side effect complaint department, but I have got to admit that I am so tired. I'm off the Prednisone that made me hyper (especially in the middle of the night) and I have a low white cell count and a low red cell count and I feel like I could sleep all day. The radiation oncologist said that a side effect of radiation is fatigue, but as tired as I am now, I probably wouldn't even notice it--it'll be much less debilitating that chemo fatigue. But Kevin and my folks have been here to take care of everything, so I've been taking it easy. We've had folks over for dinner twice and my parents shopped and cooked the meals and cleaned up afterward. It's so nice to be pampered like this.
Thursday, April 04, 2002
Wednesday was my last chemo--yipee! Of course, I wasn't too happy Wednesday because I just got all those nasty chemicals pumped into me, but it was a nice feeling knowing that it was the last one. That and I had a low white cell count--900. One of the nurses in the infusion center even got me a little gift. (Another one came by to reminisce about how horrendous my first chemo was, what with the bone marrow biopsy and then the subsequent search for a vein for the IV. Oh, good times. NOT!)
They also pulled the PICC line out. For something that was so hard to get in and keep in, it certainly came out rather easily and rapidly. And I have my arm back!
My mom is going to get me back in shape. After three months of lying around, my body needs it. The amusing part about my mom's offer is that when I got hooked on going to the gym (in college, after determining that starving myself wasn't possible in the land of infinite food) I tried to get her to go. But she's become one of the converted-she's even done kickboxing! We'll put together some sort of program to get me back in shape and I'll listen to her advice not just because she's my mother, but because she's had a personal trainer.
They also pulled the PICC line out. For something that was so hard to get in and keep in, it certainly came out rather easily and rapidly. And I have my arm back!
My mom is going to get me back in shape. After three months of lying around, my body needs it. The amusing part about my mom's offer is that when I got hooked on going to the gym (in college, after determining that starving myself wasn't possible in the land of infinite food) I tried to get her to go. But she's become one of the converted-she's even done kickboxing! We'll put together some sort of program to get me back in shape and I'll listen to her advice not just because she's my mother, but because she's had a personal trainer.
Tuesday, April 02, 2002
Yesterday we went to see the radiation oncologist. Lots of new forms to fill out, including a "pain picture". That's where you mark on a picture of a human (male) where things hurt. I was all ready to leave it blank because I didn't think they needed to know what hurt since I was on Neupogen, but Kevin made me fill it out. I should have used little lightning bolts to mark the areas. The forms were taken up by a nurse entirely too perky for words. She also asked me to guess my weight before putting me on the scale. Fortunately I was a little slow to react so I didn't smart off and ask if she wanted it in pounds or kilograms--either one I could have told her because chemo patients get measured every which way each week and we have to take those numbers from one doctor to the next.
The radiation oncologist had some good news, he said that the chemo combined with the radiation yielded a 95% cure rate. (He guessed chemo alone was about 75%.) We've scheduled the subsequent appointments to get me setup for radiation, although we haven't decided when to start. I'd like to recover a bit from the chemo, but I'd also like to get this over with. The doctor said I probably wouldn't even notice the radiation fatigue given all the trouble I've had with the chemo.
So now that chemo is nearly over (one more, tomorrow!), I'm ready for all these side effects to end. Including the baldness. I am tired of wearing hats--it's just one more thing to coordinate, outfit-wise. Granted, you're not expected to be fashionable if you're bald, but that's a hard goal to just abandon. Right now I have as much hair as the guy on "The Shield", which is to say I have a relatively decent five o'clock shadow. And the occasional longer hair here and there. Good thing we live in San Francisco--I know I'm going to go out hatless long before I have a reasonable head of hair.
The radiation oncologist had some good news, he said that the chemo combined with the radiation yielded a 95% cure rate. (He guessed chemo alone was about 75%.) We've scheduled the subsequent appointments to get me setup for radiation, although we haven't decided when to start. I'd like to recover a bit from the chemo, but I'd also like to get this over with. The doctor said I probably wouldn't even notice the radiation fatigue given all the trouble I've had with the chemo.
So now that chemo is nearly over (one more, tomorrow!), I'm ready for all these side effects to end. Including the baldness. I am tired of wearing hats--it's just one more thing to coordinate, outfit-wise. Granted, you're not expected to be fashionable if you're bald, but that's a hard goal to just abandon. Right now I have as much hair as the guy on "The Shield", which is to say I have a relatively decent five o'clock shadow. And the occasional longer hair here and there. Good thing we live in San Francisco--I know I'm going to go out hatless long before I have a reasonable head of hair.
