Wednesday, January 30, 2002
Monday I felt good enough to go into work. I was scheduled to moderate a panel discussion, and I believe I pulled it off! (Think of a Ricki Lake/Jerry Springer show on a technical topic with an audience of geeks.) There were 7 panelists (one who wouldn't shut up, naturally) and about 50 - 60 people in the audience. I got to show of my new "chemo cut", a haircut I got on Sunday where I just told the stylist to cut it all off because it was going to fall out anyway. You can see it here!
Tuesday I had another unexplained fever, so we took one more trip to Stanford to get poked and prodded. My counts were good, so it was a catch-n-release--I was sent home with the third round of chemo still scheduled for Wednesday. Well, actually 2 and three-fourths for Wednesday because I have to go back Thursday for another dose for the week.
Wednesday while I was getting the chemo, the clown showed up. Now, this is an adult hospital--the children's hospital is right next door. The clown is an elderly man dressed in standard clown regalia (big shoes, baggy pants, makeup, red rubber ball nose) and he has a puppet dressed just like him. The infusion center is a series of 20'x20' rooms with chairs in the corners where the patients sit. So when he comes it, it's hard to avoid him. And when you get your anti-naseau drugs, it makes it even harder because your brain just can't comprehend that there is a CLOWN in front of you and you just stare at him through his schtick because it's just surreal. Your companion, in my case Kevin, is left to attempt to avoid eye contact with this person who's apparently doing community service from the loony bin. Even the staff can't do a great job of hiding their annoyance, although they can usually spin it into bemusement.
Next week I'm getting a PICC line installed, which is basically a blood faucet (that sounds gross, doesn't it? But that's not as gross as what I call the "hosptial hat trick, and I spared you that!) It's a more permanent IV-type access to a larger vein that will eliminate some needle-sticks and make the chemo easier to tolerate. I've been getting it in the hand because that's where my good veins are, but it makes my veins ache a bit because some of the chemo is corrosive. And, to be perfectly honest, getting the IV's put in is what I've been freaking out about the most. And when you freak out, your veins run and hide and then they have to dig around. So we'll see how that works--or if I just find something else to freak out about.
I was going to wax philisophical about the absence of mirrors in oncology day care center rest rooms, but they've installed new ones--full length, no less. Just in time for my hair to start falling out, which it's doing. (Another point for the "Life Isn't Fair" column--I still have to shave my legs.) Martha Stewart had a show on making hats, so maybe I'll just make my own. It seemed pretty simple. First, get some wool. Then felt it and make a hat out of it. There were a few other steps in between and some specific pieces of equipment, but how hard can it be?
Tuesday I had another unexplained fever, so we took one more trip to Stanford to get poked and prodded. My counts were good, so it was a catch-n-release--I was sent home with the third round of chemo still scheduled for Wednesday. Well, actually 2 and three-fourths for Wednesday because I have to go back Thursday for another dose for the week.
Wednesday while I was getting the chemo, the clown showed up. Now, this is an adult hospital--the children's hospital is right next door. The clown is an elderly man dressed in standard clown regalia (big shoes, baggy pants, makeup, red rubber ball nose) and he has a puppet dressed just like him. The infusion center is a series of 20'x20' rooms with chairs in the corners where the patients sit. So when he comes it, it's hard to avoid him. And when you get your anti-naseau drugs, it makes it even harder because your brain just can't comprehend that there is a CLOWN in front of you and you just stare at him through his schtick because it's just surreal. Your companion, in my case Kevin, is left to attempt to avoid eye contact with this person who's apparently doing community service from the loony bin. Even the staff can't do a great job of hiding their annoyance, although they can usually spin it into bemusement.
Next week I'm getting a PICC line installed, which is basically a blood faucet (that sounds gross, doesn't it? But that's not as gross as what I call the "hosptial hat trick, and I spared you that!) It's a more permanent IV-type access to a larger vein that will eliminate some needle-sticks and make the chemo easier to tolerate. I've been getting it in the hand because that's where my good veins are, but it makes my veins ache a bit because some of the chemo is corrosive. And, to be perfectly honest, getting the IV's put in is what I've been freaking out about the most. And when you freak out, your veins run and hide and then they have to dig around. So we'll see how that works--or if I just find something else to freak out about.
I was going to wax philisophical about the absence of mirrors in oncology day care center rest rooms, but they've installed new ones--full length, no less. Just in time for my hair to start falling out, which it's doing. (Another point for the "Life Isn't Fair" column--I still have to shave my legs.) Martha Stewart had a show on making hats, so maybe I'll just make my own. It seemed pretty simple. First, get some wool. Then felt it and make a hat out of it. There were a few other steps in between and some specific pieces of equipment, but how hard can it be?
Sunday, January 27, 2002
I am home, the conquering hero of neutropenic fever! I am on a high of a bounty of newly-created white blood cells, generated by doeses of G-CSF and waves of antibiotics. Apparently, I did tempt the fates with my comment about not catching a break because soon after the expected fever, I got an unexpected one. And fever means a trip to the hospital to determine if you have enough white blood cells to go home and suffer. If you don't have enough of those precious white blood cells (one specific kind of white blood cell, to be exact), then you get to stay and claim your reward of round-the-clock monitoring and waves of antibiotics. They knew my white blood cell count was low (they tested it during Wednesday's chemo), so we packed out bag and checked in Thursday evening.
I was in a host-compromised room, which is rather scary. Everyone has to wash their hands before coming in and I have to wear a mask if I go out. No unpeeled fruit or flowers. All kinds of rules that make you realize just why every commercial today pushes something antibacterial or antimicrobial.
Probably the worst part had to be for my parents. They were arriving on Friday at noon, and Kevin and I just didn't have the heart to call them (late) Thursday night and say, oh, by the way, don't go to the house, just come straight to the hospital. And no, they don't know what's wrong with me, or what to do about it.
Laying around in the hospital--had to stay in my room, of course--gave me lots of time to think, and lots of time to think when you feel very, very, bad is not what I consider to be a healthy proposition. Kevin was there a lot, so he got to hear much of my "HOW THE HELL AM I GOING TO GET THROUGH THIS?!?!", and he was great. The voice of logic is wonderful to hear when you can't even remember what it was like to not have something hurt or deal with the nuances of explaining the quality and quantity of ALL of your bodily excretions. Mostly I was trying to figure out what kind of life I'd get to have for the next few months. At work? At home? A combo? I had started telling people at work, and everyone has been great. I hadn't cried, which definitely made it easier. My favorite reaction so far: "Other than the cancer, how were your holidays?" And I had been trying to figure out how to do my job bald, as if that was going to be the worst that was going to happen. I suppose I thought it was like pregnancy--tiring, sometimes painful, incredibly evident, but managable. While I was in the hospital, the attending oncologist heard I had been working, and I said yes, my original plan was to continue to work part-time and to cure my cancer part-time. Not on Stanford V chemo, she said. Great, now they tell me. Looks like I'll be bumping up the cancer-curing to high priority.
I was in a host-compromised room, which is rather scary. Everyone has to wash their hands before coming in and I have to wear a mask if I go out. No unpeeled fruit or flowers. All kinds of rules that make you realize just why every commercial today pushes something antibacterial or antimicrobial.
Probably the worst part had to be for my parents. They were arriving on Friday at noon, and Kevin and I just didn't have the heart to call them (late) Thursday night and say, oh, by the way, don't go to the house, just come straight to the hospital. And no, they don't know what's wrong with me, or what to do about it.
Laying around in the hospital--had to stay in my room, of course--gave me lots of time to think, and lots of time to think when you feel very, very, bad is not what I consider to be a healthy proposition. Kevin was there a lot, so he got to hear much of my "HOW THE HELL AM I GOING TO GET THROUGH THIS?!?!", and he was great. The voice of logic is wonderful to hear when you can't even remember what it was like to not have something hurt or deal with the nuances of explaining the quality and quantity of ALL of your bodily excretions. Mostly I was trying to figure out what kind of life I'd get to have for the next few months. At work? At home? A combo? I had started telling people at work, and everyone has been great. I hadn't cried, which definitely made it easier. My favorite reaction so far: "Other than the cancer, how were your holidays?" And I had been trying to figure out how to do my job bald, as if that was going to be the worst that was going to happen. I suppose I thought it was like pregnancy--tiring, sometimes painful, incredibly evident, but managable. While I was in the hospital, the attending oncologist heard I had been working, and I said yes, my original plan was to continue to work part-time and to cure my cancer part-time. Not on Stanford V chemo, she said. Great, now they tell me. Looks like I'll be bumping up the cancer-curing to high priority.
Thursday, January 24, 2002
Yesterday's chemo went fine--until I got home and found myself with a fever; a common side effect to the drugs I had today. Blech. Not as bad as the flu, however, but I just can't seem to catch a break!
Actually, I shouldn't tempt fate and say that. We did get some good news; the bone marrow biopsy came back clean. Yeaaah!
Actually, I shouldn't tempt fate and say that. We did get some good news; the bone marrow biopsy came back clean. Yeaaah!
Sunday, January 20, 2002
In a rather perverse twist of fate, I got the flu over the weekend; a very unauspicious start to chemo. Wednesday I felt fine (well, relatively speaking) and went to work on Thursday. I started telling coworkers and working out a reduced schedule. I was going to kick this cancer thing in my spare time! Then reality kicked in; the flu isn't fun when you're not on chemo and it's distinctly more unpleasant when you are. We had to go into the hospital on Saturday to make sure I didn't have some infection brewing.
Wednesday, January 16, 2002
Today we saw the medical oncologist at Stanford, had a bone marrow biopsy, and the first of 12 weekly rounds of chemo. All this in just 7 hours and 1 parking ticket !
The oncologist confirmed the results of the PET scan and talked about how the staging seminar on Monday went. I'm stage 2AE. Stage 2 because of more than one site, but in the same area (above the diaphram). 'A' for asymptomatic, meaning I had no night sweats, fatigue, unexplained weight loss and 'E' for extension, which is the lymph node/rib tumor combo. Since this is an unusual presentation, they won't enroll me in any studies (which is fine with me and the doctor--she said she didn't want to monkey around with anything new, she wanted to go with what worked.)
The bone marrow biopsy again reminded me of the distinct un-gentleness of medical procedures. The biopsy I had previously was a fine needle biopsy, this, on the other hand, wasn't. They had to remove a core of hipbone containing marrow from the back of my hip. As usual, the local anesthesia hurts more, so I can understand why those without the hard bones I have don't feel much, but she had to go in twice for me and really work on it. Kevin was watching and he was surprised she didn't just climb up on the table and with me and jump up and down on the needle. The other reason people may report little pain is because it hurts after the local wears off, it felt like I'd backed up full speed into the corner of a table.
After that we talked to the oncologist, and she recommends the Stanford 5 chemo, so that's what we're going with. (The nurse had brought up ABVD because that's the more common one, but she also recommends Stanford 5.) 12 weekly doses of chemo, every Wednesday. Following that will be 4 weeks of daily (M - F) radiation. The weird thing about cancer is that no one says, "Do this." They say, "We think you should do this. You could also do that. What do you want to do?" They can only advise you of treatment options. So they asked us today what chemo we wanted. They recommend Stanford 5. We could also do ABVD. Which do we want? It's like when I was getting the chemo drugs, and the nurse was confirming the dosages with me (Will you confirm that this is 10mg of abc in 20ml of xyz ?"). I don't know what they're supposed to be, I only know that they come up with the dosages based on my height and weight and although I was scrupulous about my weight, the nurse measured me with my shoes on, even though I told her how tall I was, but she had already written it down. So now all my dosages are based on me being 3cm taller than I really am and I just want to ask the nurse if there isn't someone more qualified than me to verify these dosages?
I'll spare you any more details of chemo. For those that have been through it, you know what it's like. For those that haven't, let's just say it's scary, tedious, and logistically challenging. And the side effects are tiresome and add insult to injury. Since this is just week one, I'm getting a taste of what's to come--they add up as we go forward.
The oncologist confirmed the results of the PET scan and talked about how the staging seminar on Monday went. I'm stage 2AE. Stage 2 because of more than one site, but in the same area (above the diaphram). 'A' for asymptomatic, meaning I had no night sweats, fatigue, unexplained weight loss and 'E' for extension, which is the lymph node/rib tumor combo. Since this is an unusual presentation, they won't enroll me in any studies (which is fine with me and the doctor--she said she didn't want to monkey around with anything new, she wanted to go with what worked.)
The bone marrow biopsy again reminded me of the distinct un-gentleness of medical procedures. The biopsy I had previously was a fine needle biopsy, this, on the other hand, wasn't. They had to remove a core of hipbone containing marrow from the back of my hip. As usual, the local anesthesia hurts more, so I can understand why those without the hard bones I have don't feel much, but she had to go in twice for me and really work on it. Kevin was watching and he was surprised she didn't just climb up on the table and with me and jump up and down on the needle. The other reason people may report little pain is because it hurts after the local wears off, it felt like I'd backed up full speed into the corner of a table.
After that we talked to the oncologist, and she recommends the Stanford 5 chemo, so that's what we're going with. (The nurse had brought up ABVD because that's the more common one, but she also recommends Stanford 5.) 12 weekly doses of chemo, every Wednesday. Following that will be 4 weeks of daily (M - F) radiation. The weird thing about cancer is that no one says, "Do this." They say, "We think you should do this. You could also do that. What do you want to do?" They can only advise you of treatment options. So they asked us today what chemo we wanted. They recommend Stanford 5. We could also do ABVD. Which do we want? It's like when I was getting the chemo drugs, and the nurse was confirming the dosages with me (Will you confirm that this is 10mg of abc in 20ml of xyz ?"). I don't know what they're supposed to be, I only know that they come up with the dosages based on my height and weight and although I was scrupulous about my weight, the nurse measured me with my shoes on, even though I told her how tall I was, but she had already written it down. So now all my dosages are based on me being 3cm taller than I really am and I just want to ask the nurse if there isn't someone more qualified than me to verify these dosages?
I'll spare you any more details of chemo. For those that have been through it, you know what it's like. For those that haven't, let's just say it's scary, tedious, and logistically challenging. And the side effects are tiresome and add insult to injury. Since this is just week one, I'm getting a taste of what's to come--they add up as we go forward.
Tuesday, January 15, 2002
We got some not-so-good news today. I should have known when no one called with the results of the PET scan, or with news after the staging seminar Monday morning. Anyway, Kevin called the nurse at Stanford to see what we can expect tomorrow, and she told us what was going on. The PET scan showed another Hodgkin's location under my left arm, probably the same place the various oncologists thought they felt a swollen lymph node. So it's stage 2. But they want to do a bone marrow biopsy tomorrow. And no clinical trials, since this is an unusual presentation of Hodgkin's. The chemo will probably be ABVD (which takes 16 weeks), not Stanford 5. The doctor will talk with us tomorrow about all this and what it means.
It's probably better to hear all this ahead of time (I'm amazed they're so forthcoming over the phone) so we can process it a bit, but it certainly doesn't make the evening any easier.
It's probably better to hear all this ahead of time (I'm amazed they're so forthcoming over the phone) so we can process it a bit, but it certainly doesn't make the evening any easier.
Friday, January 11, 2002
Today was a PET scan. I'm getting a little too experienced with these kinds of tests; I can definitely tell a difference between having them done in a hospital versus a scanner-in-a-box. This one entails getting injected with radioactive stuff, sleeping for an hour, and then being scanned for an hour. This is to look for soft tissue problems and to get a baseline to see how the chemotherapy/radiation works.
I don't know if it's the stuff they inject or the stress of the test, but I'm wiped out. Why I needed to come home and sleep for two hours after laying down for three is beyond me. But no early results this time; at the scanner-in-a-box there's no doctor on site.
I don't know if it's the stuff they inject or the stress of the test, but I'm wiped out. Why I needed to come home and sleep for two hours after laying down for three is beyond me. But no early results this time; at the scanner-in-a-box there's no doctor on site.
Thursday, January 10, 2002
Wednesday, 1/9/2
Today we go back to Stanford for more tests. We give my pre-surgical CT scans to the nurse (our nurse?), who finally asks the big question--where am I going to be treated? We've been wondering when they'd ask this; they knew we were going back to Seton yesterday. We had talked about it so when the nurse asked us we said we were going to go with Stanford. Now we just have to break up with Seton....
I have a bone scan, which involves injecting me with radioactive material, waiting three hours, and then getting an image. This is to look for other bone abnormalities; if there are any, that's bad news. No more 1E, it means stage 4. But the doctor gives us the preliminary results--nothing abnormal!
I celebrate by going shopping. I firmly believe that every event has an outfit, and I've decided my cancer treatment outfits will be soft, comfy, and made of fabrics that you don't normally wear, like velvet, satin, silk, and anything fuzzy. Loungewear, if you will. I ran across a rack of such clothing, and a look was born. Now I just need shoes.
Tuesday, 1/8/2
Today we go to Stanford, then back to Seton. We have to pick up the CT films from the scan Friday, and I run into my surgeon in X-ray. He reads the report to me and says it looks great--all clear. He's been very nice, almost too nice. When doctors are too nice, it scares me. But he asks me to keep him posted.
Stanford better be good at treating cancer because they suck at scheduling. And parking--parking is a nightmare. But this is a cancer treatment factory; a very large-scale operation. But we'd been told no one goes here for the hand-holding, they go here because their survival statistics are so high.
The waiting rooms are crowded in the Oncology Unit, there are folks here bald, in wheelchairs, and shell-shocked newbies like me clutching unwieldy X-ray, CT, & MRI films. When we eventually get in to see the doctor we are heartened. Even though it's highly unusual, they've seen this type of "presentation" of Hodgkin's before. As long as they don't find any other problems in my bones or soft tissue, it's considered Stage 1E. which means one site (the lymph node) with a local extension (the bone tumor). 1E! Treatment is still chemo, Stanford 5 once a week for 8 - 12 weeks, followed by 4 weeks of daily radiation. (I've been wondering exactly what they'd radiate if it is a 1E, because they took the node and tumor and rib out, but she says they'll radiate the surgical area.)
Since it is unusual, they want to present me at their Hodgkin's conference. (Not me, exactly, but my case.) Unusual doesn't seem so bad anymore. They're scheduling other tests--another chest X-ray, a bone scan, and some blood work.
We go back to Seton, late, and head right for the radiation oncologists office. His staff is puzzled; we have no appointment. So we rush down to the medical oncologists office, and they immediately page the radiation oncologist and tell him that the patient is here. Amusing. But they are still considering me stage 2 or 4; they want to do a PET scan and a bone marrow biopsy. I figured they had enough marrow in the rib to check, but they want to see marrow from other sites.
Most people probably get a second opinion consecutively, after they have the first, but we're doing it concurrently. Dueling doctors, if you will. (Actually, two hospitals means twice the testing appointment options.) But Kevin and I feel like we're cheating! We did tell the oncologists at Seton that we'd gone to Stanford, and they were very professional about it (That's good, we always like to hear what our colleagues say), but it still feels weird. We told the Stanford oncologist that we were seeing Seton oncolgists, and during our consultation with her it felt like she was selling us on the Stanford--the Stanford 5 chemo, their experience with Hodgkin's, etc. We're probably going to have to choose, and soon.
1/4/2
Today was the CT scan--neck, chest, abdomen and pelvis. This is a standard test in staging Hodgkin's; they're looking for swollen lymph nodes and other signs that things aren't right. I'm happy they have such technology, years ago it was all exploratory surgery.
The scan requires me to drink vaguely coconut-tasting stuff and be injected with other stuff that also gives you a funny taste in your mouth. Oh, and I have to start the scan with my arms down, but put my arms up over my head in 15 seconds while the nurse and the CT tech yell at me to do just that. They congratulate me on accomplishing this task in just a few seconds. It seems stupid, but then I realize that most people being scanned are not all that healthy to begin with, so it may not be all that easy. Then I get stuck thinking about how if it is such a problem, why is the machine configured to only give you 15 seconds? It's like ATM's that require you to grab your card in a few seconds, but spit the receipt out so it falls on the ground (and then chastise you for littering). Who do they build these things for? I mean, everything else about the CT scan is automated. The machine tells you when to breathe in and hold your breath and moves you as required. Why can't it pause while you get your arms up over your head? For that matter, why doesn't the machine say, "Put your arms over your head"?
After the scan is over, the CT tech asks me if I'm being treated at the hospital. I say I don' t know. She looks puzzled and asks when I was diagnosed and I tell her last week. She says, "I thought you'd been diagnosed years ago."
Note to medical technicians and other medical personnel-"SHUT UP! JUST SHUT UP! EVERYTHING YOU DO IS SCARY, SO EVERYTHING YOU TALK ABOUT IS SCARY, TOO. IF YOU CAN'T SAY ANYTHING INNOCUOUS, OR TALK ABOUT THE WEATHER, PLEASE DON'T SAY ANYTHING AT ALL. I must have freaked out the whole weekend over what she said. I mean, she was looking right at the scans as they were being done! What the hell did she see?
1/3/2
Yesterday we saw the radiology oncologist from Seton and Thursday we met with the medical oncologist from Seton. I tell my story repeatedly, to nurses, residents, and the doctors. (Here it is, if you're interested. Complete with reports.) I get poked and prodded. Their reaction is that it may be Stage 2 or 4, basically because it is in the bone. They both say the new standard therapy for Hodgkins is chemo first, then radiation. I am disappointed and pissed. This is not good news. I was hoping for an earlier stage, especially since I've got no other symptoms, and I was really hoping for just radiation. (Don't ask me why, but I was.)
The surgeon came by while we were at the medical oncologist to take out the stitch from the chest tube. I'm laying down and he's getting ready to take it out and asks if I have any pain medication. Then he asks if I'd like any anesthetic. Then he asks if I want to be knocked out. I'm freaking out and he laughs and say, "All done!" After that, I nearly asked him if I'd be able to play the violin--because I never could before.
1/2/2
We're back from vacation, and now I'm ready to start dealing with everything. Right now. I'm irritated that we haven't had any messages regarding appointments, so I call the surgeon's office and his admin says she doesn't know anything about it, the surgeon is in surgery and she'll call later. I fume. I find Stanford Medical Center's Oncology Division New Patient Referral number on the web and call and refer myself. The surgeon's admin does call back, we have an appointment today and tomorrow. I feel guilty for thinking such horrid thoughts about her.
12/27/1 to 1/1/2
We head up to Portland to see Kevin's family. His sister has a wonderful beach house on the Oregon coast, and his father will be there too. Our trip is delayed somewhat by Conor developing what we call the puking crud (he got it the last time we went out of town) so we delay our flight a bit. Which is good, because my cat also develops a hacking crud that requires a quick trip to the vet. Can anything else bad happ--wait, don't even think such things, because they could. Let's just say we had a wonderfully recuperative trip. Kevin, too, because he has to recuperate from catching the puking crud Conor had.
12/26/1
The surgeon calls with the final pathology report (results here). It's definitely Hodgkin's, and I need to have it staged. He'll set up appointments with two oncologists at Seton for the first week of the new year.
12/24/1 and 1/25/1
Christmas Eve and Christmas Day pass in a Vicodin haze for me. I don't know how Kevin is dealing with the cancer diagnosis, but I can tell you it's much easier with pharmaceuticals to take the edge off. Conor is confused enough by the concept of Christmas, let alone Mommy hobbling around the house. But by Christmas Day I'm feeling good enough to want to get out of the house, so we do go to dinner at our friends. Chris and Laura are hosting a traditional English Christmas dinner, complete with trifle. It is an amazing meal; just what we needed.
12/23/1
Today I go home. I am feeling better, good enough to want to get out of this place. And the amusement value of the morphine is wearing off since it's also given me a hideous, horrendous rash on my face--worse than any teenage acne. (There ought to be a commercial--this is your face on drugs.)
Apologies to Dennis Miller, but bear with me while I go off on a rant. Why is the nursing staff so concerned about my ability to fart? (Please spare me the medical rationale--every doctor I've talked to has said this is a load of crap, so to speak.) If you want me to fart, either feed me fart-friendly foods, or pull my finger. I mean, is there a line item on my chart that says, "Fart" right next to "Temp" and "B/P"?
The surgeon comes by again and talks to me about what to do. He's going to set up appointments with oncologists at Seton for the week after New Year's, but definitely recommends getting other opinions because this is an atypical case. He mentions Stanford and other research hospitals. He says I should spend the next week just recovering from surgery and then be ready to deal with the cancer after the new year.
We get home in the early afternoon, and Kevin goes to the grocery store while the babysitter watches Conor. She's giving him a bath and I go into the bathroom to see how he's doing. He stands up when I come in, and then falls before the sitter can get to him. We end up in the emergency room getting the "super glue" on his chin. I stop thinking thoughts like, "How can this get any worse?" because it obviously can. I can't, however, stop myself from thinking what a horrible mother I am because I can't even take care of my own child.
12/22/1
Day two in the private room, and the nursing staff is being entirely too nice. Definitely a bad sign. Kevin brings Conor by for a visit and he plays with everything in the room--he thinks my chest water pump is cool. The surgeon comes with the preliminary results of the pathology report and tells us it's Hodgkin's. He also removes the chest pump. It hurts, as he promised, but not as much as peeling off all the tape five days later they used to seal up the area so I don't start leaking air.
I spend much of my time in a painkiller haze, and watching television while on morphine is definitely interesting. Martha Stewart making wood-grain wrapping paper is way cool. Imagine giving someone a huge block of wood with a bow on it for Christmas! Her staff must have morphine drips in the office. I'm getting the hang of the hospital life; every shift the new RN and LPN come in and introduces themselves. Even if it's in the middle of the night. And sometimes they want to talk, which is just an added bonus. I'm definitely a cancer patient to them, they chat about other cancer cases and say I'm lucky not to have a mastectomy because then they'd have to use the same arm for blood pressure every time. These conversations are usually the reason I'm watching Martha Stewart at 4am.
12/21/1
The day after surgery and I'm hooked up to a morphine drip and a chest pump. Despite this, I still delude myself that I'm going home today. We are getting no information--the surgeon doesn't come by until early evening, and he uses some very scary words--radiation, banking eggs, tumor. And they transferred me to a private room. This was supposed to be the END of this whole episode, and it looks like it's just the beginning of something worse. Things are not looking good, and I lose it. Unfortunately, I lose it while on the phone to my brother, which definitely makes things worse for him and me.
12/20/1
Surgery today, we show up early. There's some confusion over how long I'll be here; the surgeon has said it was outpatient surgery. But that's not how it turned out. Not that I know this for sure, but I'm guessing the surgeon and the resident uttered a "Holy shit!" when they got me opened up. There was a tumor attached to the rib, the size of a medium egg. He had to remove 13cm of rib, the tumor, and a lymph node, as opposed to ~5cm of rib. So the surgery was much more invasive than originally planned, and I came out of it in considerable pain and with a chest pump.
It was quite the effort to get the pain under control; the surgeon told me later that rib surgery is more painful than open heart surgery. Seton has this pain management scale from 1 - 10 with corresponding smiley-style faces that range from a smile to a squiggly frown. None of them are yelling. So they keep asking me how much it hurts on that scale, and my responses are along the lines of:
-What about 11? Why isn't there an 11?
-"Yeeeeeees!"
-"is 'fuck' an option?
Later I find out that they are giving me various drugs and then asking me these questions. To me, they're just interrupting my intense pain experience to pester me with stupid questions. Kevin was quite the trouper; staying with me in recovery until they got the drug cocktail to work. I don't know what would have happened if he wasn't continually after them about the pain; I'm guessing they would have left me hanging because the anesthesiologist said they'd given me enough drugs to knock out a large man.
Kevin has more information about what happened in surgery than I do, but I know things have not gone well. It's always a bad sign when they won't tell you what's going on. I'm transferred to a semi-private hospital room once I've ingested enough pain medication to allow me to sleep for more than 5 minutes at a time.
Today we go back to Stanford for more tests. We give my pre-surgical CT scans to the nurse (our nurse?), who finally asks the big question--where am I going to be treated? We've been wondering when they'd ask this; they knew we were going back to Seton yesterday. We had talked about it so when the nurse asked us we said we were going to go with Stanford. Now we just have to break up with Seton....
I have a bone scan, which involves injecting me with radioactive material, waiting three hours, and then getting an image. This is to look for other bone abnormalities; if there are any, that's bad news. No more 1E, it means stage 4. But the doctor gives us the preliminary results--nothing abnormal!
I celebrate by going shopping. I firmly believe that every event has an outfit, and I've decided my cancer treatment outfits will be soft, comfy, and made of fabrics that you don't normally wear, like velvet, satin, silk, and anything fuzzy. Loungewear, if you will. I ran across a rack of such clothing, and a look was born. Now I just need shoes.
Tuesday, 1/8/2
Today we go to Stanford, then back to Seton. We have to pick up the CT films from the scan Friday, and I run into my surgeon in X-ray. He reads the report to me and says it looks great--all clear. He's been very nice, almost too nice. When doctors are too nice, it scares me. But he asks me to keep him posted.
Stanford better be good at treating cancer because they suck at scheduling. And parking--parking is a nightmare. But this is a cancer treatment factory; a very large-scale operation. But we'd been told no one goes here for the hand-holding, they go here because their survival statistics are so high.
The waiting rooms are crowded in the Oncology Unit, there are folks here bald, in wheelchairs, and shell-shocked newbies like me clutching unwieldy X-ray, CT, & MRI films. When we eventually get in to see the doctor we are heartened. Even though it's highly unusual, they've seen this type of "presentation" of Hodgkin's before. As long as they don't find any other problems in my bones or soft tissue, it's considered Stage 1E. which means one site (the lymph node) with a local extension (the bone tumor). 1E! Treatment is still chemo, Stanford 5 once a week for 8 - 12 weeks, followed by 4 weeks of daily radiation. (I've been wondering exactly what they'd radiate if it is a 1E, because they took the node and tumor and rib out, but she says they'll radiate the surgical area.)
Since it is unusual, they want to present me at their Hodgkin's conference. (Not me, exactly, but my case.) Unusual doesn't seem so bad anymore. They're scheduling other tests--another chest X-ray, a bone scan, and some blood work.
We go back to Seton, late, and head right for the radiation oncologists office. His staff is puzzled; we have no appointment. So we rush down to the medical oncologists office, and they immediately page the radiation oncologist and tell him that the patient is here. Amusing. But they are still considering me stage 2 or 4; they want to do a PET scan and a bone marrow biopsy. I figured they had enough marrow in the rib to check, but they want to see marrow from other sites.
Most people probably get a second opinion consecutively, after they have the first, but we're doing it concurrently. Dueling doctors, if you will. (Actually, two hospitals means twice the testing appointment options.) But Kevin and I feel like we're cheating! We did tell the oncologists at Seton that we'd gone to Stanford, and they were very professional about it (That's good, we always like to hear what our colleagues say), but it still feels weird. We told the Stanford oncologist that we were seeing Seton oncolgists, and during our consultation with her it felt like she was selling us on the Stanford--the Stanford 5 chemo, their experience with Hodgkin's, etc. We're probably going to have to choose, and soon.
1/4/2
Today was the CT scan--neck, chest, abdomen and pelvis. This is a standard test in staging Hodgkin's; they're looking for swollen lymph nodes and other signs that things aren't right. I'm happy they have such technology, years ago it was all exploratory surgery.
The scan requires me to drink vaguely coconut-tasting stuff and be injected with other stuff that also gives you a funny taste in your mouth. Oh, and I have to start the scan with my arms down, but put my arms up over my head in 15 seconds while the nurse and the CT tech yell at me to do just that. They congratulate me on accomplishing this task in just a few seconds. It seems stupid, but then I realize that most people being scanned are not all that healthy to begin with, so it may not be all that easy. Then I get stuck thinking about how if it is such a problem, why is the machine configured to only give you 15 seconds? It's like ATM's that require you to grab your card in a few seconds, but spit the receipt out so it falls on the ground (and then chastise you for littering). Who do they build these things for? I mean, everything else about the CT scan is automated. The machine tells you when to breathe in and hold your breath and moves you as required. Why can't it pause while you get your arms up over your head? For that matter, why doesn't the machine say, "Put your arms over your head"?
After the scan is over, the CT tech asks me if I'm being treated at the hospital. I say I don' t know. She looks puzzled and asks when I was diagnosed and I tell her last week. She says, "I thought you'd been diagnosed years ago."
Note to medical technicians and other medical personnel-"SHUT UP! JUST SHUT UP! EVERYTHING YOU DO IS SCARY, SO EVERYTHING YOU TALK ABOUT IS SCARY, TOO. IF YOU CAN'T SAY ANYTHING INNOCUOUS, OR TALK ABOUT THE WEATHER, PLEASE DON'T SAY ANYTHING AT ALL. I must have freaked out the whole weekend over what she said. I mean, she was looking right at the scans as they were being done! What the hell did she see?
1/3/2
Yesterday we saw the radiology oncologist from Seton and Thursday we met with the medical oncologist from Seton. I tell my story repeatedly, to nurses, residents, and the doctors. (Here it is, if you're interested. Complete with reports.) I get poked and prodded. Their reaction is that it may be Stage 2 or 4, basically because it is in the bone. They both say the new standard therapy for Hodgkins is chemo first, then radiation. I am disappointed and pissed. This is not good news. I was hoping for an earlier stage, especially since I've got no other symptoms, and I was really hoping for just radiation. (Don't ask me why, but I was.)
The surgeon came by while we were at the medical oncologist to take out the stitch from the chest tube. I'm laying down and he's getting ready to take it out and asks if I have any pain medication. Then he asks if I'd like any anesthetic. Then he asks if I want to be knocked out. I'm freaking out and he laughs and say, "All done!" After that, I nearly asked him if I'd be able to play the violin--because I never could before.
1/2/2
We're back from vacation, and now I'm ready to start dealing with everything. Right now. I'm irritated that we haven't had any messages regarding appointments, so I call the surgeon's office and his admin says she doesn't know anything about it, the surgeon is in surgery and she'll call later. I fume. I find Stanford Medical Center's Oncology Division New Patient Referral number on the web and call and refer myself. The surgeon's admin does call back, we have an appointment today and tomorrow. I feel guilty for thinking such horrid thoughts about her.
12/27/1 to 1/1/2
We head up to Portland to see Kevin's family. His sister has a wonderful beach house on the Oregon coast, and his father will be there too. Our trip is delayed somewhat by Conor developing what we call the puking crud (he got it the last time we went out of town) so we delay our flight a bit. Which is good, because my cat also develops a hacking crud that requires a quick trip to the vet. Can anything else bad happ--wait, don't even think such things, because they could. Let's just say we had a wonderfully recuperative trip. Kevin, too, because he has to recuperate from catching the puking crud Conor had.
12/26/1
The surgeon calls with the final pathology report (results here). It's definitely Hodgkin's, and I need to have it staged. He'll set up appointments with two oncologists at Seton for the first week of the new year.
12/24/1 and 1/25/1
Christmas Eve and Christmas Day pass in a Vicodin haze for me. I don't know how Kevin is dealing with the cancer diagnosis, but I can tell you it's much easier with pharmaceuticals to take the edge off. Conor is confused enough by the concept of Christmas, let alone Mommy hobbling around the house. But by Christmas Day I'm feeling good enough to want to get out of the house, so we do go to dinner at our friends. Chris and Laura are hosting a traditional English Christmas dinner, complete with trifle. It is an amazing meal; just what we needed.
12/23/1
Today I go home. I am feeling better, good enough to want to get out of this place. And the amusement value of the morphine is wearing off since it's also given me a hideous, horrendous rash on my face--worse than any teenage acne. (There ought to be a commercial--this is your face on drugs.)
Apologies to Dennis Miller, but bear with me while I go off on a rant. Why is the nursing staff so concerned about my ability to fart? (Please spare me the medical rationale--every doctor I've talked to has said this is a load of crap, so to speak.) If you want me to fart, either feed me fart-friendly foods, or pull my finger. I mean, is there a line item on my chart that says, "Fart" right next to "Temp" and "B/P"?
The surgeon comes by again and talks to me about what to do. He's going to set up appointments with oncologists at Seton for the week after New Year's, but definitely recommends getting other opinions because this is an atypical case. He mentions Stanford and other research hospitals. He says I should spend the next week just recovering from surgery and then be ready to deal with the cancer after the new year.
We get home in the early afternoon, and Kevin goes to the grocery store while the babysitter watches Conor. She's giving him a bath and I go into the bathroom to see how he's doing. He stands up when I come in, and then falls before the sitter can get to him. We end up in the emergency room getting the "super glue" on his chin. I stop thinking thoughts like, "How can this get any worse?" because it obviously can. I can't, however, stop myself from thinking what a horrible mother I am because I can't even take care of my own child.
12/22/1
Day two in the private room, and the nursing staff is being entirely too nice. Definitely a bad sign. Kevin brings Conor by for a visit and he plays with everything in the room--he thinks my chest water pump is cool. The surgeon comes with the preliminary results of the pathology report and tells us it's Hodgkin's. He also removes the chest pump. It hurts, as he promised, but not as much as peeling off all the tape five days later they used to seal up the area so I don't start leaking air.
I spend much of my time in a painkiller haze, and watching television while on morphine is definitely interesting. Martha Stewart making wood-grain wrapping paper is way cool. Imagine giving someone a huge block of wood with a bow on it for Christmas! Her staff must have morphine drips in the office. I'm getting the hang of the hospital life; every shift the new RN and LPN come in and introduces themselves. Even if it's in the middle of the night. And sometimes they want to talk, which is just an added bonus. I'm definitely a cancer patient to them, they chat about other cancer cases and say I'm lucky not to have a mastectomy because then they'd have to use the same arm for blood pressure every time. These conversations are usually the reason I'm watching Martha Stewart at 4am.
12/21/1
The day after surgery and I'm hooked up to a morphine drip and a chest pump. Despite this, I still delude myself that I'm going home today. We are getting no information--the surgeon doesn't come by until early evening, and he uses some very scary words--radiation, banking eggs, tumor. And they transferred me to a private room. This was supposed to be the END of this whole episode, and it looks like it's just the beginning of something worse. Things are not looking good, and I lose it. Unfortunately, I lose it while on the phone to my brother, which definitely makes things worse for him and me.
12/20/1
Surgery today, we show up early. There's some confusion over how long I'll be here; the surgeon has said it was outpatient surgery. But that's not how it turned out. Not that I know this for sure, but I'm guessing the surgeon and the resident uttered a "Holy shit!" when they got me opened up. There was a tumor attached to the rib, the size of a medium egg. He had to remove 13cm of rib, the tumor, and a lymph node, as opposed to ~5cm of rib. So the surgery was much more invasive than originally planned, and I came out of it in considerable pain and with a chest pump.
It was quite the effort to get the pain under control; the surgeon told me later that rib surgery is more painful than open heart surgery. Seton has this pain management scale from 1 - 10 with corresponding smiley-style faces that range from a smile to a squiggly frown. None of them are yelling. So they keep asking me how much it hurts on that scale, and my responses are along the lines of:
-What about 11? Why isn't there an 11?
-"Yeeeeeees!"
-"is 'fuck' an option?
Later I find out that they are giving me various drugs and then asking me these questions. To me, they're just interrupting my intense pain experience to pester me with stupid questions. Kevin was quite the trouper; staying with me in recovery until they got the drug cocktail to work. I don't know what would have happened if he wasn't continually after them about the pain; I'm guessing they would have left me hanging because the anesthesiologist said they'd given me enough drugs to knock out a large man.
Kevin has more information about what happened in surgery than I do, but I know things have not gone well. It's always a bad sign when they won't tell you what's going on. I'm transferred to a semi-private hospital room once I've ingested enough pain medication to allow me to sleep for more than 5 minutes at a time.
