Today is chemo day, and I've spent remarkably little time thinking about what to wear. Not sure what that means. It will be my first deliciously fragrant infusion in Hershey's new cancer center It has WiFi, so there is a chance you may see me on the interwebz (however, it also has cable, and I'm really hoping Bravo will be showing the deliciously trashy looking NYC Prep or Miami Social).
Also, I have to take steroids on the day before, day of, and day after my treatment. While I have yet to experience 'roid rage (settling merely for 'roid 'rritation), it does screw with my sleep, and therefore writing, habits. If you see extra typos or things that don't make sense, just imagine me whipping out the cancer card.
So, onto Week 2 (electric bugaloo) after the infusion.
I'd say that Week 2 is a misnomer (which is sad because I came up with it, but, well, cancer card), because it really starts around Day 5 after treatment. By Day 5, most of the nausea/stomach yuck, fatigue, and weird limb fire has abated, and we get into the really strange side effects. Without the fatigue to sideline me all of the time, these side effects tend to have less impact on my daily life, which is nice. However, they tend to be much more unusual and grosser than the Week 1 side effects. Since I love gross things, I thought I'd describe them for you.
First gross side effect - oral thrush, the yeast infection for your mouth! Apparently, this is one of the most common side effects of immunosuppression. Essentially, my wacked out body can no longer keep my oral flora in check, so yeast (which lives in everyone's mouth, including yours, right now) decides it's time to subvert the dominant paradigm and make its move for supremacy. Which hurts. A lot. When I was in the hospital that time, they kept telling me about how scary shingles are and how I needed IV antibiotics so I didn't die, and my only thought was, "Can you please give me something for this thrush?" Thrush can spread to your esophagus, which causes a quick, gross, and painful death. Unfortunately, I can't really gargle with Monistat (boys, those are the commercials you look away from when you watch Grey's Anatomy with your lady), but I do have some antifungal pills I can take now.
Second gross side effect - sores on the inside of my nose. I have NO idea what this is about, but it's happened twice now. I'll give you an update on it if it's particularly gross or weird after I've talked to my doctor to get the 411. Basically, I just get sores all along the inside of my septum. They are bloody and crusty, and they sit right inside my turbinates (those little flappy things that are right on the inside of your septum), and the crust rubs up against the tubinate every time I move my nose. They are more irritating than painful, but make me fidget with my nose a lot (which is classy). Reading the internet, which is ALWAYS a good idea when looking for medical information, seems to suggest it's a side effect of Avastin, one of the drugs I take for my clinical trial.
Third gross side effect - hair loss. So, you mostly know about this one. I started losing my hair on Day 15 after my first treatment and it stabilized around Day 18. The weird thing is that it happened again on Day 15 of this cycle. This is AWESOME! My hair was already a lost cause, but now I have even less leg hair to shave. Someone on one of the boards I post on was saying that she works in a cancer center and a lot of people's body hair never recovers, while their head hair does. If I can get out of cancer with smaller boobs and no leg hair, it will have all been worth it. If you are the praying type, this is the ultimate goal.
I'd like to talk about the hair loss thing because I've been having "feelings" about it. As many of you know, I'm not generally one of those people who has a lot of "feelings," but somehow I manage to soldier through. Many of these feelings, such as feeling conspicuous and unattractive, are pretty normal and just need some time and working through. However, one feeling has really surprised me, so I thought I'd share it. When the wind blows through the sparse stubble on my head, it is the most amazing sensation ever. Twice, I've caught myself lying in bed feeling sad that so many people never get to have the wind flow through their stubble and wondering if there is a way to induce the same level of thin stubble without going through chemo so that I can share it. I imagine I'll become less enamored of this once Winter hits, but for now, I really pleased that I've gotten the chance to experience it. Perhaps balding men get to go through the same thing.
Tuesday, July 28, 2009
Sunday, July 26, 2009
I have my next chemo infusion on Tuesday, so I thought I'd write a nice little update about what chemo has been like. I feel like chemo is one of those things that sounds super scary, and thus, I'll scratch your morbid itch with some tales from the dark side. Since these updates tend to get a little epic, and I'd hate to offend the tl;dr crowd (that's "too long, didn't read" for those of you who haven't been spending a lot of time reading the internet lately), I'll discuss a different week of chemo during each of the next few updates.
First off, let me describe my chemo schedule a bit. I get an infusion every three weeks, and my side effects seem to change with every week between infusions. When I get my infusion, I get a shot of sweet, sweet Ativan to calm me, (which I don't really need, but I get this weird smug thrill anytime I'm prescribed drugs that have street value, like I won a prescription lottery or something) and a nausea suppressant and then I get two chemo drugs. The first is docetaxel (brand name taxotere), which is standard treatment for non-metastatic (yay!!) breast cancer. The second is a drug I can't spell (brand name avastin), which is part of the clinical trial. I also get another drug I can't spell (brand name xoloda) in pill form that I take for 14 days as part of the clinical trial. Avastin and xoloda are used in patients with metastatic breast cancer, and the clinical trial is looking at whether patients who get these drugs as part of standard chemo have better outcomes than patients who only get docetaxel. I will get this regimen of drugs for two more cycles (i.e., Tuesday and then three weeks from Tuesday) before my drugs change to what's known in cancer circles (you know, among us elite cancer patients) as AC. I'm sure I'll write another long post about that when it happens.
In this update, I'll describe Week 1:
So, the actual infusion process has a tendency to be pretty great. I start off with the ativan and revel in the smugness that only comes from knowing that kids are illicitly trading their hard earned allowance for this drug in dingy high school bathrooms. Then, I lie around and watch trashy TV (full disclosure: I adore terrible TV, movies, and amateur fiction, the trashier the better) for a couple of hours while the rest of the chemo drips straight into my heart (!!) and then make Cassie or Don or whoever drive home.
Immediately afterwards, I mostly feel tired (thanks ativan!), but I also feel the effects of the chemo pretty quickly. My biggest side effect during week 1 is an overwhelming sense of malaise. I feel tired and gross and mentally foggy and just generally mildly unwell. I have a little bit of nausea and a little bit of indigestion, but mostly my stomach feels somehow off. I get a touch of peripheral neuropathy which makes my skin and extremities feel like they are stuck in a low temperature fire. It doesn't really hurt, but again, it feels mildly uncomfortable. Finally, I get this kind of profound fatigue. I'll be out doing something, like complaining about how mildly unwell I feel (one of my favorite pastimes), and suddenly feel this overwhelming need to take a nap. Then, like a heroin addict looking for his next fix (I'm trying to add a lot of drug references since I'm writing about chemo), I become singularly consumed with a search for a bed. Once the bed is found, I cook it up and shoot it. Or maybe lie in it and sleep for 2 to 3 hours. This can happen up to 4 times per day on a particularly fatiguing day and usually goes away by Day 4 or 5 after chemo. Week 1 is the least fun of all of the weeks.
I also have a lot of taste changes during Week 1. Taste changes are easily the weirdest part of chemo because they come and go, so you never know when you're going to get a surprise bite of disgusting. Even water will taste strange during Week 1. Taste changes are also the saddest part of chemo, because inevitably, I'll get an intense craving for something, like a delicious refreshing Coca Cola, only to have it taste terrible. The craving won't go away, so I'm just stuck longing for something that no longer exists for me. I told you it was sad! One of the weirdest taste changes, which only seems to happen during Week 1, is that carbonated beverages, such as the aforementioned soda, all seem flat and too sweet. Gummi bears, on the other hand, taste bitter. (To those of you that gave me tons of gummi bears during my chemo shower, please don't fret. They start tasting great again during Week 2.)
During Week 1, I also have to get daily neupogen shots. You may remember from past updates that neupogen is a drug that boosts my white blood cell counts. They make another drug like this, neulasta, which you only get once, but apparently it's contraindicated during this chemo regime. So, everyday, I traipse off to the hospital to get the injection.
It is during these trips to the hospital that I sometimes pause and reflect on the cancer experience and think, "This kind of sucks." My inner monologue usually goes more like, "I can see how someone who wasn't as optimistic would really get bummed out by this. It's inconvenient and kind of hurts and I feel mildly unwell anyway and my hat looks kind of dumb. You know, (aside: I never really think 'you know' to myself, but for the sake of written transitions, let's pretend I do), they say that optimists are the least realistic people and that depressed people have a much more realistic view of the world. Maybe I should be depressed. That doesn't sound like much fun," and then I start wondering about what kind of douchey thing Jon Gosselin got up to that afternoon and if acid washed jeans will ever come back in (as an optimist, I think not). Usually, after the shots, I get some bone pain (that's how I know it's working) and take some percocet and feel smug.
Also, during these trips, I get blood work done, and I think about how blood is made up of different kinds of blood and how I can have too much of some blood and not enough of other blood. Think about this sometime and it will BLOW YOUR MIND!
Weeks 2 and 3 to follow when I get around to writing them.
Not related to chemo, but Cassie just told me that in the Philippines, they have Orange Julius, but it's called Orange Brutus. The more I think about that, the funnier it gets.
First off, let me describe my chemo schedule a bit. I get an infusion every three weeks, and my side effects seem to change with every week between infusions. When I get my infusion, I get a shot of sweet, sweet Ativan to calm me, (which I don't really need, but I get this weird smug thrill anytime I'm prescribed drugs that have street value, like I won a prescription lottery or something) and a nausea suppressant and then I get two chemo drugs. The first is docetaxel (brand name taxotere), which is standard treatment for non-metastatic (yay!!) breast cancer. The second is a drug I can't spell (brand name avastin), which is part of the clinical trial. I also get another drug I can't spell (brand name xoloda) in pill form that I take for 14 days as part of the clinical trial. Avastin and xoloda are used in patients with metastatic breast cancer, and the clinical trial is looking at whether patients who get these drugs as part of standard chemo have better outcomes than patients who only get docetaxel. I will get this regimen of drugs for two more cycles (i.e., Tuesday and then three weeks from Tuesday) before my drugs change to what's known in cancer circles (you know, among us elite cancer patients) as AC. I'm sure I'll write another long post about that when it happens.
In this update, I'll describe Week 1:
So, the actual infusion process has a tendency to be pretty great. I start off with the ativan and revel in the smugness that only comes from knowing that kids are illicitly trading their hard earned allowance for this drug in dingy high school bathrooms. Then, I lie around and watch trashy TV (full disclosure: I adore terrible TV, movies, and amateur fiction, the trashier the better) for a couple of hours while the rest of the chemo drips straight into my heart (!!) and then make Cassie or Don or whoever drive home.
Immediately afterwards, I mostly feel tired (thanks ativan!), but I also feel the effects of the chemo pretty quickly. My biggest side effect during week 1 is an overwhelming sense of malaise. I feel tired and gross and mentally foggy and just generally mildly unwell. I have a little bit of nausea and a little bit of indigestion, but mostly my stomach feels somehow off. I get a touch of peripheral neuropathy which makes my skin and extremities feel like they are stuck in a low temperature fire. It doesn't really hurt, but again, it feels mildly uncomfortable. Finally, I get this kind of profound fatigue. I'll be out doing something, like complaining about how mildly unwell I feel (one of my favorite pastimes), and suddenly feel this overwhelming need to take a nap. Then, like a heroin addict looking for his next fix (I'm trying to add a lot of drug references since I'm writing about chemo), I become singularly consumed with a search for a bed. Once the bed is found, I cook it up and shoot it. Or maybe lie in it and sleep for 2 to 3 hours. This can happen up to 4 times per day on a particularly fatiguing day and usually goes away by Day 4 or 5 after chemo. Week 1 is the least fun of all of the weeks.
I also have a lot of taste changes during Week 1. Taste changes are easily the weirdest part of chemo because they come and go, so you never know when you're going to get a surprise bite of disgusting. Even water will taste strange during Week 1. Taste changes are also the saddest part of chemo, because inevitably, I'll get an intense craving for something, like a delicious refreshing Coca Cola, only to have it taste terrible. The craving won't go away, so I'm just stuck longing for something that no longer exists for me. I told you it was sad! One of the weirdest taste changes, which only seems to happen during Week 1, is that carbonated beverages, such as the aforementioned soda, all seem flat and too sweet. Gummi bears, on the other hand, taste bitter. (To those of you that gave me tons of gummi bears during my chemo shower, please don't fret. They start tasting great again during Week 2.)
During Week 1, I also have to get daily neupogen shots. You may remember from past updates that neupogen is a drug that boosts my white blood cell counts. They make another drug like this, neulasta, which you only get once, but apparently it's contraindicated during this chemo regime. So, everyday, I traipse off to the hospital to get the injection.
It is during these trips to the hospital that I sometimes pause and reflect on the cancer experience and think, "This kind of sucks." My inner monologue usually goes more like, "I can see how someone who wasn't as optimistic would really get bummed out by this. It's inconvenient and kind of hurts and I feel mildly unwell anyway and my hat looks kind of dumb. You know, (aside: I never really think 'you know' to myself, but for the sake of written transitions, let's pretend I do), they say that optimists are the least realistic people and that depressed people have a much more realistic view of the world. Maybe I should be depressed. That doesn't sound like much fun," and then I start wondering about what kind of douchey thing Jon Gosselin got up to that afternoon and if acid washed jeans will ever come back in (as an optimist, I think not). Usually, after the shots, I get some bone pain (that's how I know it's working) and take some percocet and feel smug.
Also, during these trips, I get blood work done, and I think about how blood is made up of different kinds of blood and how I can have too much of some blood and not enough of other blood. Think about this sometime and it will BLOW YOUR MIND!
Weeks 2 and 3 to follow when I get around to writing them.
Not related to chemo, but Cassie just told me that in the Philippines, they have Orange Julius, but it's called Orange Brutus. The more I think about that, the funnier it gets.
Tuesday, July 14, 2009
Time for a cancer update - only 5 days later than promised. (Give me a break, I have cancer.) Honestly, there isn't much to report. I got chemo on Wednesday, which went fine, but then I promptly came down with chemobrain and lost my keys. After an enthusiastic search, in which two nurses and a security guard helped us turn the hospital upside down, our hero, Cassie, thought to see if we'd left them in the car. We had! The keys were found and a delightful ride to State College was had by all (actually, just me and Cass, because it would have been weird if the nurses and security guard came home with us).
This chemo cycle has been different from the previous one in a few ways. First off, I received slightly lower doses of most of the medicines due to my unfortunate hospital stay during the last cycle. I've also been getting daily neupogen shots to boost my white cell counts. The shots seem to be helping, since I haven't been having many of the infectious type side effects that I suffered from last time. While the infectious type side effects (ITSEs) have been practically nil, I've been much more fatigued with this cycle and the aforementioned chemobrain (a real thing they tell you about in the hospital) has been worse. Today, I woke up pretty bright-eyed and bushy-tailed (growing a tail is a side-effect of one of the meds I'm on), though, so I'm hoping that I'll be back to my perky self in no time flat.
Some excellent news did come out of my pre-infusion doctor appointment. Every time I see my medical oncologist, she takes a little measuring tape and does a rough estimate of my tumor size. After my first round of chemo, my tumor has shrunk from about 5.5 cms, to 4 cms! If it continues to shrink at this rate, I will have no tumor by the time they do surgery! Not only is this fantastic news for my tumor, but it means that any cancer cells floating around in my bloodstream are in for a world of hurt.
So, that's about it for this update. I was hoping to write something a little funnier, perhaps incorporating some of the weirder chemo side effects, like taste changes, but the brain fog is impeding my usually rapier sharp wit. I'll try to save up some good jokes for next time.
This chemo cycle has been different from the previous one in a few ways. First off, I received slightly lower doses of most of the medicines due to my unfortunate hospital stay during the last cycle. I've also been getting daily neupogen shots to boost my white cell counts. The shots seem to be helping, since I haven't been having many of the infectious type side effects that I suffered from last time. While the infectious type side effects (ITSEs) have been practically nil, I've been much more fatigued with this cycle and the aforementioned chemobrain (a real thing they tell you about in the hospital) has been worse. Today, I woke up pretty bright-eyed and bushy-tailed (growing a tail is a side-effect of one of the meds I'm on), though, so I'm hoping that I'll be back to my perky self in no time flat.
Some excellent news did come out of my pre-infusion doctor appointment. Every time I see my medical oncologist, she takes a little measuring tape and does a rough estimate of my tumor size. After my first round of chemo, my tumor has shrunk from about 5.5 cms, to 4 cms! If it continues to shrink at this rate, I will have no tumor by the time they do surgery! Not only is this fantastic news for my tumor, but it means that any cancer cells floating around in my bloodstream are in for a world of hurt.
So, that's about it for this update. I was hoping to write something a little funnier, perhaps incorporating some of the weirder chemo side effects, like taste changes, but the brain fog is impeding my usually rapier sharp wit. I'll try to save up some good jokes for next time.
Wednesday, July 8, 2009
It's chemo day! Here's to hoping that it's a theme day on the cancer ward! I'm wearing my "Chemo: all of the cool kids are doing it" shirt to show my chemotastic pride, and my favorite shoes that I wanted to wear last time but ultimately decided against. Fascinating, I know.
I thought you might like to see some pictures of the great head shaving of 2009. Facebook says that anyone should be able to view them using this link: http://www.facebook.com/album.php?aid=87506&id=775822206&l=531411302f. That look lasted a total of like 12 hours before I started getting a bald patch in the front of my awesome fauxhawk. I have to say, I loved the really short look, though. I can't wait to rock it again when the hair grows back in. (Also, please note that we are redoing the bathroom and don't actually live in a hovel...unless it increases your sympathies towards me, in which case we do.)
Also, here is a picture now that I've lost most of my hair. Please note that the glamor shots angle is a result of Don being like 18 feet taller than I am. http://www.facebook.com/photo.php?pid=1936266&l=9cbda30944&id=775822206
Sorry for the lame links. I will fix after chemo.
I still have to shave my legs (which is BULLSHIT), but less frequently. My armpit hair is pretty much mostly gone. My eyebrows are thinning, but very slowly. My eyelashes were a joke to begin with, so I haven't been keeping good tabs on them. Maybe after all of this is done, I can get that drug that makes your eyelashes grow without feeling like a total tool about it.
I'll post a second update after I get my chemicals pumped right into my heart. (Can you tell I am completely and utterly enamored with the idea of things going straight into my heart?)
And finally, my tumor feels very different and smaller and not as attached to my skin. Chemo is definitely working.
I thought you might like to see some pictures of the great head shaving of 2009. Facebook says that anyone should be able to view them using this link: http://www.facebook.com/album.php?aid=87506&id=775822206&l=531411302f. That look lasted a total of like 12 hours before I started getting a bald patch in the front of my awesome fauxhawk. I have to say, I loved the really short look, though. I can't wait to rock it again when the hair grows back in. (Also, please note that we are redoing the bathroom and don't actually live in a hovel...unless it increases your sympathies towards me, in which case we do.)
Also, here is a picture now that I've lost most of my hair. Please note that the glamor shots angle is a result of Don being like 18 feet taller than I am. http://www.facebook.com/photo.php?pid=1936266&l=9cbda30944&id=775822206
Sorry for the lame links. I will fix after chemo.
I still have to shave my legs (which is BULLSHIT), but less frequently. My armpit hair is pretty much mostly gone. My eyebrows are thinning, but very slowly. My eyelashes were a joke to begin with, so I haven't been keeping good tabs on them. Maybe after all of this is done, I can get that drug that makes your eyelashes grow without feeling like a total tool about it.
I'll post a second update after I get my chemicals pumped right into my heart. (Can you tell I am completely and utterly enamored with the idea of things going straight into my heart?)
And finally, my tumor feels very different and smaller and not as attached to my skin. Chemo is definitely working.
Tuesday, June 30, 2009
We have hair loss!! I can't even describe how weird this is (not weird bad, more weird fascinating). I'll run my fingers through my hair, hair that was firmly attached to my scalp as recently as this morning, and my hand will be littered with loose strands. If I actually pull on the ends, I get big chunks. It's not as dramatic as you'd see in a movie about cancer, but it's more dramatic than any hair loss experience I've had previous to this. It's also incredibly messy.
I'm going to shave my head tomorrow. I'm thinking I'll rock a mohawk (technically a fauxhawk, because I plan on having side stubble) for a little while, just because I can, before buzzing the whole thing.
They say that this tends to be the hardest part of being a cancer patient, but I'm really excited. Easily, the best part of having cancer is getting to pull the cancer card. No one can say no to the cancer card. And now I get to WEAR it! I don't even have to pull it! I'm going to be unstoppable! Plus, when else is it acceptable for someone my age to rock a mohawk? But what are you going to say? Nothing! Because you wouldn't deny a girl with cancer her last hairstyle of choice, would you? (See what I did there?)
In other news, it sounds like my chemo dose will stay the same for my next infusion and I will get a Neulasta shot, just like I wanted!
I'm going to shave my head tomorrow. I'm thinking I'll rock a mohawk (technically a fauxhawk, because I plan on having side stubble) for a little while, just because I can, before buzzing the whole thing.
They say that this tends to be the hardest part of being a cancer patient, but I'm really excited. Easily, the best part of having cancer is getting to pull the cancer card. No one can say no to the cancer card. And now I get to WEAR it! I don't even have to pull it! I'm going to be unstoppable! Plus, when else is it acceptable for someone my age to rock a mohawk? But what are you going to say? Nothing! Because you wouldn't deny a girl with cancer her last hairstyle of choice, would you? (See what I did there?)
In other news, it sounds like my chemo dose will stay the same for my next infusion and I will get a Neulasta shot, just like I wanted!
Monday, June 29, 2009
A new update in which our fearless patient gets to spend 3 days watching cable TV while all doped out on Percocet:
The really short version of this story - I spent 3 days in the Mount Nittany Medical Center, because I had an infection and a really low white blood cell count. I'm out now but I can't be in public for a week. The drawn out version, with more quips, is below.
I'm not sure of the best place to start this story, but I've decided to take the long view and talk about my entire chemo experience. As I reported on chemo day, actual chemo and the next few days were a breeze. The Thursday after chemo (day 2), Don and I went to Pittsburgh for a wedding. I managed the car trip, the rehearsal dinner, and the wedding with little trouble (although daily naps were needed). Saturday, the day fatigue was supposed to set in, we drove back to PA for Aaron and Marissa's lovely wedding. I had a short nap before the ceremony and felt great until around 8 pm. Feeling a little tired and achy, I decided to call it a night.
This was followed by 4 days of feeling mildly fluish. I also had a nice rash, and my mouth hurt. Since nearly every malady under the sun is listed as a side effect of chemo, I didn't think much of it until Wednesday when my temperature (which I have to take 4 times per day) exceeded the critical threshold of 100.5. It was 100.6. Being a good little patient, I called the oncologist on call in Hershey, who, after some hemming and hawing, decided I should go to the ER in State College, just in case. Continuing to be a good patient, I did just that.
It was the opinion of both the doctor in the ER and the doctor in Hershey that I was probably just fine, but we should check my white blood count to make sure my immune system wasn't shot (known as being neutropenic). Turns out, my white blood cell levels were nearly undetectable, and, for all intents and purposes, I had no immune system. As a result, I'd gotten what's known as a neutropenic fever, which is when basically anything in the environment causes an infection. While I was freaking out about the possibility of getting a staph infection from being in a hospital with no immune system (staph infections being one of my biggest medical fears, up there with cancer, anterograde amnesia, and shingles), I paused to self soothe by thinking of the positives in this situation:
1) Having no white blood cells means my tumor should fear me like the fist of an angry god, because the chemo is slaughtering all of my quickly dividing cells.
2) Maybe all of this wonkiness I've been feeling is not a result of chemo itself, but a result of a subsequent infection.
While I was thinking these things, the hospital staff was admitting me and took me to a nice room with a view of some cattle. At this point, it was 5:30 am and I'd spent all night in the ER, so I was hoping to get some sleep. Instead I got a nice migraine. (As some background, I get what are known as classic migraines, which means any pain is preceded by a half hour of warning in which about 50% of my vision gets filled with patches of what looks like TV snow.) So, I stumbled around the hallway until I found someone who could find a nurse. While I was waiting for the nurse, I self-soothed by thinking, "This is the hospital. They get patients with migraines all the time. They can just give me a shot in my port and it will go away." Instead, the nurse came by and told me I was only approved for Tylenol. Once again, I'd met my old nemesis Tylenol. I told the nurse in that Tylenol was not an appropriate pain reliever for a migraine, and she needed to find a doctor to prescribe something different.
Also, during my aura, I met with an infections disease specialist (or, from what I could see, about half of an infectious disease specialist) who told me that the crazy rash was....wait for it...shingles. Yes! I have managed to acquire not one, but two of my most feared medical maladies within 2 months!! Way to go me for facing my fears! He also said I had oral thrush (like a yeast infection for your mouth!), and I needed to be in IV antibiotics until my white cells came back up. Then the nurse came back and told me the doctor had prescribed percocet for the migraine. Now, percocet is not really an appropriate treatment for a migraine either, but I could no longer muster any righteous indignation.
So, Cassie came by, and I spent the rest of the day doped up on percocet, hooked up to an antibiotic IV (through my port, which I've come to really appreciate), watching Millionaire Matchmaker on the cable TV and taking Valtrex (which, thanks to their genital herpes commercials, made me feel slightly skanky). The next day, Friday, my WBC was up only marginally, so the oncologist overseeing my treatment decided to give me a shot of a drug called neupogen, which makes my bone marrow produce more white blood cells and causes really weird, terrible bone pain (that means it's working). While the bone pain sucked, it did entitle me to more narcotics, which really help to pass the time in the hospital. So if you replace Millionaire Matchmaker with Housewives of Atlanta/New Jersey and add a few antifungals in with the Valtrex, you basically have my Friday and Saturday. The neupogen worked like a charm and by Sunday, my white blood cell count had gone from .02 to 12! They let me come home, where I have no cable or addictive prescription drugs.
I'm at home now, armed with prescription antibiotics, antifungals, and antivirals (and magic mouthwash...it's magic!). My immune system and everything else is on the mend, but I'm not allowed to go to public places for 5 days, after which point, I'm supposed to get permission from my oncologists at Hershey before returning to work. (at least according to my little form).
So, some frequently asked questions:
1) What does this mean for your clinical trial?
Apparently, clinical trials have mechanisms to handle "adverse events." Essentially, two things can happen. I may either get a lower dose of the chemo drugs in my next infusion/pill, or I may get a neulasta shot (similar to the neupogen shot) the day after my infusion. I'm hoping for the second option since the current dose of chemo is kicking my cancer's butt (I can already feel changes in the tumor size), and neupogen was so successful for me.
2) Have you lost your hair?
Not yet. It is supposed fall out 10 to 14 days after the chemo dose (although it sometimes falls out only after multiple doses). Monday will be day 14, and my hair is currently firmly attached to my head. I've run out of shampoo (I'm currently using the Suave we bought for the dog), and I've spent a lot of money on cute hats. I think the value of the cancer card goes way up once the bald head is involved, and I'm going to be pretty upset if I don't get to enjoy every last perk that cancer has to offer.
3) Is there anything you can do?
Since Don works from home and Cassie left the Philippines to come take care of me, I'm pretty set in terms of actual manpower. However, things like mixed CDs really help on the car rides back and forth from Hershey. And old books and magazines have been fantastic for mitigating the waits at various doctors appointments. So, if you'd like to help, but you're at a loss, these sorts of things have been great. And of course, just hearing from people is really, really nice!
I think that's it for this novel of an update!
The really short version of this story - I spent 3 days in the Mount Nittany Medical Center, because I had an infection and a really low white blood cell count. I'm out now but I can't be in public for a week. The drawn out version, with more quips, is below.
I'm not sure of the best place to start this story, but I've decided to take the long view and talk about my entire chemo experience. As I reported on chemo day, actual chemo and the next few days were a breeze. The Thursday after chemo (day 2), Don and I went to Pittsburgh for a wedding. I managed the car trip, the rehearsal dinner, and the wedding with little trouble (although daily naps were needed). Saturday, the day fatigue was supposed to set in, we drove back to PA for Aaron and Marissa's lovely wedding. I had a short nap before the ceremony and felt great until around 8 pm. Feeling a little tired and achy, I decided to call it a night.
This was followed by 4 days of feeling mildly fluish. I also had a nice rash, and my mouth hurt. Since nearly every malady under the sun is listed as a side effect of chemo, I didn't think much of it until Wednesday when my temperature (which I have to take 4 times per day) exceeded the critical threshold of 100.5. It was 100.6. Being a good little patient, I called the oncologist on call in Hershey, who, after some hemming and hawing, decided I should go to the ER in State College, just in case. Continuing to be a good patient, I did just that.
It was the opinion of both the doctor in the ER and the doctor in Hershey that I was probably just fine, but we should check my white blood count to make sure my immune system wasn't shot (known as being neutropenic). Turns out, my white blood cell levels were nearly undetectable, and, for all intents and purposes, I had no immune system. As a result, I'd gotten what's known as a neutropenic fever, which is when basically anything in the environment causes an infection. While I was freaking out about the possibility of getting a staph infection from being in a hospital with no immune system (staph infections being one of my biggest medical fears, up there with cancer, anterograde amnesia, and shingles), I paused to self soothe by thinking of the positives in this situation:
1) Having no white blood cells means my tumor should fear me like the fist of an angry god, because the chemo is slaughtering all of my quickly dividing cells.
2) Maybe all of this wonkiness I've been feeling is not a result of chemo itself, but a result of a subsequent infection.
While I was thinking these things, the hospital staff was admitting me and took me to a nice room with a view of some cattle. At this point, it was 5:30 am and I'd spent all night in the ER, so I was hoping to get some sleep. Instead I got a nice migraine. (As some background, I get what are known as classic migraines, which means any pain is preceded by a half hour of warning in which about 50% of my vision gets filled with patches of what looks like TV snow.) So, I stumbled around the hallway until I found someone who could find a nurse. While I was waiting for the nurse, I self-soothed by thinking, "This is the hospital. They get patients with migraines all the time. They can just give me a shot in my port and it will go away." Instead, the nurse came by and told me I was only approved for Tylenol. Once again, I'd met my old nemesis Tylenol. I told the nurse in that Tylenol was not an appropriate pain reliever for a migraine, and she needed to find a doctor to prescribe something different.
Also, during my aura, I met with an infections disease specialist (or, from what I could see, about half of an infectious disease specialist) who told me that the crazy rash was....wait for it...shingles. Yes! I have managed to acquire not one, but two of my most feared medical maladies within 2 months!! Way to go me for facing my fears! He also said I had oral thrush (like a yeast infection for your mouth!), and I needed to be in IV antibiotics until my white cells came back up. Then the nurse came back and told me the doctor had prescribed percocet for the migraine. Now, percocet is not really an appropriate treatment for a migraine either, but I could no longer muster any righteous indignation.
So, Cassie came by, and I spent the rest of the day doped up on percocet, hooked up to an antibiotic IV (through my port, which I've come to really appreciate), watching Millionaire Matchmaker on the cable TV and taking Valtrex (which, thanks to their genital herpes commercials, made me feel slightly skanky). The next day, Friday, my WBC was up only marginally, so the oncologist overseeing my treatment decided to give me a shot of a drug called neupogen, which makes my bone marrow produce more white blood cells and causes really weird, terrible bone pain (that means it's working). While the bone pain sucked, it did entitle me to more narcotics, which really help to pass the time in the hospital. So if you replace Millionaire Matchmaker with Housewives of Atlanta/New Jersey and add a few antifungals in with the Valtrex, you basically have my Friday and Saturday. The neupogen worked like a charm and by Sunday, my white blood cell count had gone from .02 to 12! They let me come home, where I have no cable or addictive prescription drugs.
I'm at home now, armed with prescription antibiotics, antifungals, and antivirals (and magic mouthwash...it's magic!). My immune system and everything else is on the mend, but I'm not allowed to go to public places for 5 days, after which point, I'm supposed to get permission from my oncologists at Hershey before returning to work. (at least according to my little form).
So, some frequently asked questions:
1) What does this mean for your clinical trial?
Apparently, clinical trials have mechanisms to handle "adverse events." Essentially, two things can happen. I may either get a lower dose of the chemo drugs in my next infusion/pill, or I may get a neulasta shot (similar to the neupogen shot) the day after my infusion. I'm hoping for the second option since the current dose of chemo is kicking my cancer's butt (I can already feel changes in the tumor size), and neupogen was so successful for me.
2) Have you lost your hair?
Not yet. It is supposed fall out 10 to 14 days after the chemo dose (although it sometimes falls out only after multiple doses). Monday will be day 14, and my hair is currently firmly attached to my head. I've run out of shampoo (I'm currently using the Suave we bought for the dog), and I've spent a lot of money on cute hats. I think the value of the cancer card goes way up once the bald head is involved, and I'm going to be pretty upset if I don't get to enjoy every last perk that cancer has to offer.
3) Is there anything you can do?
Since Don works from home and Cassie left the Philippines to come take care of me, I'm pretty set in terms of actual manpower. However, things like mixed CDs really help on the car rides back and forth from Hershey. And old books and magazines have been fantastic for mitigating the waits at various doctors appointments. So, if you'd like to help, but you're at a loss, these sorts of things have been great. And of course, just hearing from people is really, really nice!
I think that's it for this novel of an update!
Tuesday, June 16, 2009
Got my first round of chemo today. Not too much to report, really. I feel pretty good, although a little tired. That may just be due to the ativan aperitif they gave me before starting in on the entree drugs. Unfortunately, I'm not too nauseous, which means that my dream of being able to spontaneously vomit on people who annoy me remains out of reach for the time being. Today through Thursday are supposed to be my big nausea days. Apparently, my big fatigue days will be Saturday (in time to be a real drag at Aaron's wedding) and Sunday, and the days when I'm most susceptible to infection will be between day 5 (Saturday) and 10 (whatever day is 5 days from Saturday). Infection results in IV antibiotics, which seems a little too dramatic for my taste, so you can expect some OCD handwashing during those times.
Fun fact - Some of the additional effects of my anti-nausea pills include: improving social interactions, mood, expression of mood, and appearance. I'll be interested in feedback from you to see how that is working out for me.
Also, it was luau day in the pediatric clinic, so the halls were filled with nurses in grass skirts and coconut bikinis. I hope they start having theme days on the cancer ward!
Fun fact - Some of the additional effects of my anti-nausea pills include: improving social interactions, mood, expression of mood, and appearance. I'll be interested in feedback from you to see how that is working out for me.
Also, it was luau day in the pediatric clinic, so the halls were filled with nurses in grass skirts and coconut bikinis. I hope they start having theme days on the cancer ward!
Sunday, June 14, 2009
Thursday -
I'm going to gloss over Thursday, because it involved a trip to the DMV, which no one wants to hear about. We also drove back up to Hershey to get an echo cardiogram (cool!) and an EKG (boring) as baseline measures before starting chemo.
Friday -
Cass and I woke up before the sun to get to Hershey for our 6am surgery call for my port installation. My port is a little plastic device that sits right under my skin below my clavicle on the left. It has a little sort of reservoir thing you inject into, and then a little tube that runs through a vein (when the doctor said which vein, I thought "oh, I've heard of that one," but now I can't remember which it is) and empties out right into my heart. RIght into my heart!! That's crazy! They said I would be awake for the procedure, but this was totally a lie. Maybe I'm sensitive to anesthesia or something, but I was dead asleep through the whole thing. I do remember that they put a little hood over my face, ostensibly so I couldn't see them putting a tube into my heart, but then I feel asleep, so I wouldn't have seen anyway. Once I'd woken up, eaten my graham crackers, and had a delicious full-sugar soda, I asked the nurse for some tylenol (having already been told that tylenol would be enough to kill the pain...yet another lie). She asked, "Do you have a headache?" I was all, "No lady, you just installed a little plastic tube in my heart and it hurts." I should have known that was the time to demand the good stuff, but I was groggy and didn't have my full wits about me. I was given a box lunch (which did not include a cookie!) and discharged. On the plus side, I did get to watch some cable TV while waiting for the anesthesia to wear off, and I got to complain a lot about how sore my port was when I got home. I would like at add an additional amendment to the healthcare bill called, "If you have to have anesthesia, you get a vicodin."
One other note about the port - I'm not supposed to shower until Wednesday, so if you see me, keep your distance.
So, that's the news from this week. I start chemo on Tuesday, and I'm thoroughly looking forward to that adventure. I bought a few cute new hats to wear once I'm bald. I've been considering shaving my head before starting the treatment, because everyone says it's a good idea. But, in typically stubborn HM fashion, I'm convinced that if I do that, I will be the one patient who doesn't lose her hair and then will be stuck with a superfluous buzz cut. So, the hair stays at least through next weekend.
I'm still in a great mood, helped by the news about being a postmenopausal woman, the scan results, and getting to spend a couple nights with my good friend Becca (seriously, if anyone wants to see some cute twins, she's got them). I'm sure the prophylactic antidepressants that my oncologist prescribed (they are good for hot flashes and the blues) are helping, too.
As always, feel free to share this news with whomever you like, and let me know if you don't want these updates (I promise I won't judge). One final note - One thing about having traumatic news is that you get an increase in personal communication. I LOVE THIS! I've been so touched by the love that I've received during this time, and I wanted to make sure that you all know that! If I don't respond to you right away, please, please, please don't think that I don't appreciate and adore your support. Calling doctors and going to appointments has been pretty much a full time job at this point, so I'm way behind on pretty much everything else.
I'm going to gloss over Thursday, because it involved a trip to the DMV, which no one wants to hear about. We also drove back up to Hershey to get an echo cardiogram (cool!) and an EKG (boring) as baseline measures before starting chemo.
Friday -
Cass and I woke up before the sun to get to Hershey for our 6am surgery call for my port installation. My port is a little plastic device that sits right under my skin below my clavicle on the left. It has a little sort of reservoir thing you inject into, and then a little tube that runs through a vein (when the doctor said which vein, I thought "oh, I've heard of that one," but now I can't remember which it is) and empties out right into my heart. RIght into my heart!! That's crazy! They said I would be awake for the procedure, but this was totally a lie. Maybe I'm sensitive to anesthesia or something, but I was dead asleep through the whole thing. I do remember that they put a little hood over my face, ostensibly so I couldn't see them putting a tube into my heart, but then I feel asleep, so I wouldn't have seen anyway. Once I'd woken up, eaten my graham crackers, and had a delicious full-sugar soda, I asked the nurse for some tylenol (having already been told that tylenol would be enough to kill the pain...yet another lie). She asked, "Do you have a headache?" I was all, "No lady, you just installed a little plastic tube in my heart and it hurts." I should have known that was the time to demand the good stuff, but I was groggy and didn't have my full wits about me. I was given a box lunch (which did not include a cookie!) and discharged. On the plus side, I did get to watch some cable TV while waiting for the anesthesia to wear off, and I got to complain a lot about how sore my port was when I got home. I would like at add an additional amendment to the healthcare bill called, "If you have to have anesthesia, you get a vicodin."
One other note about the port - I'm not supposed to shower until Wednesday, so if you see me, keep your distance.
So, that's the news from this week. I start chemo on Tuesday, and I'm thoroughly looking forward to that adventure. I bought a few cute new hats to wear once I'm bald. I've been considering shaving my head before starting the treatment, because everyone says it's a good idea. But, in typically stubborn HM fashion, I'm convinced that if I do that, I will be the one patient who doesn't lose her hair and then will be stuck with a superfluous buzz cut. So, the hair stays at least through next weekend.
I'm still in a great mood, helped by the news about being a postmenopausal woman, the scan results, and getting to spend a couple nights with my good friend Becca (seriously, if anyone wants to see some cute twins, she's got them). I'm sure the prophylactic antidepressants that my oncologist prescribed (they are good for hot flashes and the blues) are helping, too.
As always, feel free to share this news with whomever you like, and let me know if you don't want these updates (I promise I won't judge). One final note - One thing about having traumatic news is that you get an increase in personal communication. I LOVE THIS! I've been so touched by the love that I've received during this time, and I wanted to make sure that you all know that! If I don't respond to you right away, please, please, please don't think that I don't appreciate and adore your support. Calling doctors and going to appointments has been pretty much a full time job at this point, so I'm way behind on pretty much everything else.
Wednesday - Chemo doctor #2 (electric bugaloo) and the Plastic Surgeon
We started off Wednesday with an appointment with a medical oncologist at Hopkins. Astute readers will remember that the surgeon at Hershey wanted me to have surgery first and then chemo, while my team at Hershey advocated for chemo first and then surgery. Both cited data that the survival rates are the same regardless of order, and I was already pretty sure that I wanted to do chemo first to take care of any of those micrometastases as quickly as possible. However, I also wanted to talk to a medical oncologist at Hopkins to see if a) the surgeon was recommending surgery because he was a surgeon, b) if there were any drawbacks to doing chemo first and c) if Hopkins recommended a different course of chemo.
I'll start off by saying that I loved the medical oncologist at Hopkins (I also love the one at Hershey). She was incredibly thorough. She told me that it was entirely reasonable to have chemo first, and in my case, she would recommend it as well. She looked at the regimen that my clinical trial involves and said that was very reasonable and aggressive. She said that if she was in my place, she would also choose to do the clinical trial. She also said that there is absolutely no benefit to choosing Hopkins over Hershey for chemo, especially since I'll be part of the clinical trial and my treatment will be highly standardized. She did mention that it might be worth going to Hopkins for surgery, and that people frequently choose to get their chemo at one hospital and their surgery at another. I think I will go for another surgical consult at Hopkins (I didn't much like the surgeon I met there last week) before deciding what to do.
She also told me that I have "the cancer of a post-menopausal woman," which caused me to have to hug it out with her (I've realized that I have this annoying habit of saying, "Let's hug it out" any time I need a hug from my doctor). So, one thing I've been reluctant to mention is that, contrary to what you'd think, having breast cancer young is actually really bad. The prognosis for most young women with breast cancer is much worse than it is for post-menopausal women. Part of the reason is that, like in my case, the cancer is caught much later than it tends to be in older women, because young women don't undergo breast cancer screening. Another part of the reason is that young women tend to get a more aggressive form of the disease that is unresponsive to hormonal treatments. Apparently, I don't have this type of cancer at all. Instead, I have a cancer that is much more treatable. So, this is fantastic news.
She told me that if my bone scan and CT scan didn't come back clean (I hadn't gotten the results at this point), that metastasized breast cancer is more like having a chronic condition like diabetes or kidney disease than a terminal illness. This was, and continues to be, a huge comfort.
Finally, she mentioned that she'd mail me a copy of her dictation notes. I pointed out that the dictation notes at Hershey called me "lovely" and "very pleasant," and that I fully expected her to up the ante. She promised that she would, so I'll report back once I get the notes. Ideally, I'd like to start a compliment war between my various doctors.
The plastic surgery consult was pretty much a waste of time. Apparently, I can't have implants because I'll need radiation. (I'll need radiation, despite having a mastectomy, because there is lymph node involvement.) I did learn that I don't have enough fat on my stomach to do a breast reconstruction, so I'd have to use butt fat. I think that's flattering, but I'm not sure. Also, the nurse that spoke with me had had a fascinating amount of work done. As many of you know, I'm a big fan of playing "guess what work the celeb has had done," so the opportunity to play in real life was a treat. I'm almost positive she'd had cheek implants and forehead botox, despite looking younger than me (although maybe she only looked younger than me because of the botox). She may have also had cheek botox and/or collagen, because she couldn't move her lips properly. Her lips were full, but they didn't have that weird underlip feature that is typical of fresh collagen. She looked so overdone that she was starting to fall into the uncanney valley. The doctor, on the other hand, looked like she hadn't had a haircut in 15 years. An interesting pair to be sure!
Next up, we soldier on to Thursday and Friday.
We started off Wednesday with an appointment with a medical oncologist at Hopkins. Astute readers will remember that the surgeon at Hershey wanted me to have surgery first and then chemo, while my team at Hershey advocated for chemo first and then surgery. Both cited data that the survival rates are the same regardless of order, and I was already pretty sure that I wanted to do chemo first to take care of any of those micrometastases as quickly as possible. However, I also wanted to talk to a medical oncologist at Hopkins to see if a) the surgeon was recommending surgery because he was a surgeon, b) if there were any drawbacks to doing chemo first and c) if Hopkins recommended a different course of chemo.
I'll start off by saying that I loved the medical oncologist at Hopkins (I also love the one at Hershey). She was incredibly thorough. She told me that it was entirely reasonable to have chemo first, and in my case, she would recommend it as well. She looked at the regimen that my clinical trial involves and said that was very reasonable and aggressive. She said that if she was in my place, she would also choose to do the clinical trial. She also said that there is absolutely no benefit to choosing Hopkins over Hershey for chemo, especially since I'll be part of the clinical trial and my treatment will be highly standardized. She did mention that it might be worth going to Hopkins for surgery, and that people frequently choose to get their chemo at one hospital and their surgery at another. I think I will go for another surgical consult at Hopkins (I didn't much like the surgeon I met there last week) before deciding what to do.
She also told me that I have "the cancer of a post-menopausal woman," which caused me to have to hug it out with her (I've realized that I have this annoying habit of saying, "Let's hug it out" any time I need a hug from my doctor). So, one thing I've been reluctant to mention is that, contrary to what you'd think, having breast cancer young is actually really bad. The prognosis for most young women with breast cancer is much worse than it is for post-menopausal women. Part of the reason is that, like in my case, the cancer is caught much later than it tends to be in older women, because young women don't undergo breast cancer screening. Another part of the reason is that young women tend to get a more aggressive form of the disease that is unresponsive to hormonal treatments. Apparently, I don't have this type of cancer at all. Instead, I have a cancer that is much more treatable. So, this is fantastic news.
She told me that if my bone scan and CT scan didn't come back clean (I hadn't gotten the results at this point), that metastasized breast cancer is more like having a chronic condition like diabetes or kidney disease than a terminal illness. This was, and continues to be, a huge comfort.
Finally, she mentioned that she'd mail me a copy of her dictation notes. I pointed out that the dictation notes at Hershey called me "lovely" and "very pleasant," and that I fully expected her to up the ante. She promised that she would, so I'll report back once I get the notes. Ideally, I'd like to start a compliment war between my various doctors.
The plastic surgery consult was pretty much a waste of time. Apparently, I can't have implants because I'll need radiation. (I'll need radiation, despite having a mastectomy, because there is lymph node involvement.) I did learn that I don't have enough fat on my stomach to do a breast reconstruction, so I'd have to use butt fat. I think that's flattering, but I'm not sure. Also, the nurse that spoke with me had had a fascinating amount of work done. As many of you know, I'm a big fan of playing "guess what work the celeb has had done," so the opportunity to play in real life was a treat. I'm almost positive she'd had cheek implants and forehead botox, despite looking younger than me (although maybe she only looked younger than me because of the botox). She may have also had cheek botox and/or collagen, because she couldn't move her lips properly. Her lips were full, but they didn't have that weird underlip feature that is typical of fresh collagen. She looked so overdone that she was starting to fall into the uncanney valley. The doctor, on the other hand, looked like she hadn't had a haircut in 15 years. An interesting pair to be sure!
Next up, we soldier on to Thursday and Friday.
did receive news that THERE IS NO EVIDENCE THAT MY CANCER HAS METASTASIZED OUTSIDE OF THE BREAST! I do NOT have Stage IV cancer. Now, that being said, there is a chance that I have what are called micrometastases, which are cancer cells that have spread in the blood stream, but with any luck, chemo and hormonal therapy will get all of them.
I think to make this simple, I'll just go in chronological order.
Tuesday - Don, Cassie, and I woke up bright eyed and bushy tailed at 5 am to make it to our 8am appointment with a fertility specialist at Hershey. Why did we see a fertility specialist? Well, the chemo will probably shut down my ovaries for a time, and some women don't regain their cycle. Both my chemo doctor at Hershey, the fertility specialist and the chemo doctor I saw at Hopkins (we'll get to her on Wednesday) all think that I'll be fertile (like the Nile) after I finish chemo. However, soon afterwards, I start hormonal therapy, which typically last for 5 years and also precludes pregnancy. So, Don and I wanted to see what our options are. It turns out all of the options are a) experimental, b) would delay chemo, c) expensive, and d) don't have great success rates. Don and I decided that we'd save our money for either trying after hormonal treatment or adopting. Since neither of us have ever been 100% sure that we want kids, we're completely okay with this.
At this point, Don peeled off to return to work and Cassie was my partner in crime for the rest of the week. Also, at this point, Tuesday gets a little crazy. Originally, I was just scheduled for a bone scan and a CT scan, but the clinical trial that I'm a part of requires some additional breast biopsies, some blood work, and of course, a bunch of consent forms. So Cass and I are running around trying to fit all of this in. First, we go to radiology, where they give me an IV and inject me with contrast. Usually, you get to wait around for a few hours and relax before they scan you. I, on the other hand, run across the medical capus with an IV tube hanging out of my arm, to give blood at the cancer center, thinking, at least they can take it out of the IV. Only they can't. So, I leave the cancer center with an IV in one arm and pressure bandage on the other to go the breast center. There, they take not 1, not 2, but 5 tissue samples. So, when I finally return to radiology, I not only have the IV and the pressure bandage, but also ice stuffed into my bra. I was a hot mess.
I would also like to take this opportunity to suggest an additional reform to the health care legislation, called the "If it requires lidocaine, I get a vicodin" measure. When someone takes 5 chunks of your boob out (I was starting to worry that there would be no tumor left), and then hands you two tylenol, you feel a little shafted. Then, when you're sitting in the bone scanner (I have no idea what the real name for this machine is) and you start to feel like the machine is going to pick up the throbbing from your now holey breast, you really start to feel like a narcotic is not an unreasonable request. We'll return to this rant when we discuss the port insertion.
The rest of the day was uneventful. My bones got scanned, which was cool because you could see my internal organs on the monitor, and then they did a CT scan of my chest. I will say that I was required to stop eating at 10:15, even though my CT scan wasn't until 3:30, and this was a brilliant move on the hospital's part. I was so hungry by the time I had to drink my contrast, that it tasted delicious. Once these tests were over, Cassie and I drove down to D.C. to stay with a friend of mine before going to see some additional doctors at Hopkins.
Next up...Wednesday at Hopkins
I think to make this simple, I'll just go in chronological order.
Tuesday - Don, Cassie, and I woke up bright eyed and bushy tailed at 5 am to make it to our 8am appointment with a fertility specialist at Hershey. Why did we see a fertility specialist? Well, the chemo will probably shut down my ovaries for a time, and some women don't regain their cycle. Both my chemo doctor at Hershey, the fertility specialist and the chemo doctor I saw at Hopkins (we'll get to her on Wednesday) all think that I'll be fertile (like the Nile) after I finish chemo. However, soon afterwards, I start hormonal therapy, which typically last for 5 years and also precludes pregnancy. So, Don and I wanted to see what our options are. It turns out all of the options are a) experimental, b) would delay chemo, c) expensive, and d) don't have great success rates. Don and I decided that we'd save our money for either trying after hormonal treatment or adopting. Since neither of us have ever been 100% sure that we want kids, we're completely okay with this.
At this point, Don peeled off to return to work and Cassie was my partner in crime for the rest of the week. Also, at this point, Tuesday gets a little crazy. Originally, I was just scheduled for a bone scan and a CT scan, but the clinical trial that I'm a part of requires some additional breast biopsies, some blood work, and of course, a bunch of consent forms. So Cass and I are running around trying to fit all of this in. First, we go to radiology, where they give me an IV and inject me with contrast. Usually, you get to wait around for a few hours and relax before they scan you. I, on the other hand, run across the medical capus with an IV tube hanging out of my arm, to give blood at the cancer center, thinking, at least they can take it out of the IV. Only they can't. So, I leave the cancer center with an IV in one arm and pressure bandage on the other to go the breast center. There, they take not 1, not 2, but 5 tissue samples. So, when I finally return to radiology, I not only have the IV and the pressure bandage, but also ice stuffed into my bra. I was a hot mess.
I would also like to take this opportunity to suggest an additional reform to the health care legislation, called the "If it requires lidocaine, I get a vicodin" measure. When someone takes 5 chunks of your boob out (I was starting to worry that there would be no tumor left), and then hands you two tylenol, you feel a little shafted. Then, when you're sitting in the bone scanner (I have no idea what the real name for this machine is) and you start to feel like the machine is going to pick up the throbbing from your now holey breast, you really start to feel like a narcotic is not an unreasonable request. We'll return to this rant when we discuss the port insertion.
The rest of the day was uneventful. My bones got scanned, which was cool because you could see my internal organs on the monitor, and then they did a CT scan of my chest. I will say that I was required to stop eating at 10:15, even though my CT scan wasn't until 3:30, and this was a brilliant move on the hospital's part. I was so hungry by the time I had to drink my contrast, that it tasted delicious. Once these tests were over, Cassie and I drove down to D.C. to stay with a friend of mine before going to see some additional doctors at Hopkins.
Next up...Wednesday at Hopkins
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