[NOTE: if you are only reading this for medical info on Jennifer, the most relevant info to know is that I started chemo today and it's all going well so far--I'm on a cocktail of anti-nausea meds, in addition to the "AC" chemo cocktail. My stomach is feeling a bit sensitive, but other than that, I'm fine--read below if you want to know more about my port surgery and/or my ruminations from Chemo Chair #16]
Hello folks--I'm writing to you live and in-person from Chemo Chair #16 at the UNC Lineberger Comprehensive Cancer Center. My nurse/bartender for today is Julie (just like the Love Boat!) and she's hooked me up to an anti-nausea cocktail of several things to help with the REAL drugs I'll be getting--the "AC" cocktail. I must admit that even though this is just the warm-up act, I'm feeling kinda weird/loopy with these anti-nausea drugs. Since this is my first time they are running my meds on a s-l-o-w d-r-i-p into my port. It looks like I have another half an hour on the anti-nausea meds, and then they have to order the chemo meds and that's another hour and a half, so I probably won't get out of here any earlier than 2 or 2:30pm.
A word about my port. I had it surgically put in on Monday--my appointment was scheduled for 3pm but I wasn't actually wheeled into an OR until closer to 5pm. Now, no one had told me what the surgery would entail and everyone made it seem like it was no big deal--a simple out-patient procedure. And in many ways they were right--the actual operation itself, start to finish, was only an hour, and then it was only half an hour for me to be in the recovery room because I was never "out" per se--I was in what they call "twilight"--meaning, I was never completed knocked out. In fact, according to my nurse, Tom, who was the one who pushed all the drugs through my i.v., I apparently told him that when I get anxious I make lists (which is true) and then I proceeded to list all the dog breeds I could think of in alphabetical order starting with chihuahua, then chow chow, then daushaund, and you get the picture.
I, of course, don't recall ANY OF THIS...although I had been making lists in my head to calm myself before the surgery--specifically I was listing all the Jane Austen novels in order of publication date and then all the major characters in all the Jane Austen novels. Yes, I am a lit nerd. Yes I am an Austen fan.
So if you are wondering, just what IS a surgical port??? Well, here's what it looks like:
The diameter is about the size of a quarter and the depth is a little thicker than a bottle cap. It is hollow and has 6 inches of tubing that runs from its center--the tubing goes through my jugular vein on my right side and directly into my heart. As Matthew kept saying to me Monday night,
"THERE'S A TUBE RUNNING RIGHT INTO YOUR HEART!"
This image doesn't show the tube running right into the heart but it does show, pretty accurately, where the port is initially placed, right under the collar bone, and then they run the tube up through the jugular and then it continue down into your heart chamber.
So that's my port. The silly people at Interventional Radiology did NOT send me home with any pain medication--they said that extra strength tylenol would be fine (I'm allergic to ibuprofren--so no motrin for me). Let me tell you I WAS IN A LOT OF PAIN AT 10PM AND EXTRA STRENGTH TYLENOL WOULD NOT HAVE CUT IT! Luckily I still had percocette tabs left over from my lumpectomy/biopsy surgery so I took 2 tabs at 10pm and then went to bed and woke up at 2am and took 2 more pills (you can take 1-2 every 4 hours and trust me, I did!). So a note to the folks in Interventional Radiology: send your patients home with a prescription for 6 percocette tabs! They will not become addicted--they will more than likely need them because they have a tube running from the jugular vein into their heart and they had to actually make 2 incisions--one below the collarbone and one at the neck to access the jugular vein. You can read more about chemo ports by clicking here.
OK, back to the chemo chair. I first sat down around 10:45am and it's now 1:33pm. I'll probably be here for another 20 minutes. I think it's extra slow this first time, because they want to monitor my reactions. Since I've been here, two women in chairs next to me have left, and 2 other women have started their own treatment. The two new women seem to know one another since they greeted one another--as did the people (both women) who were with them--one a friend, the other a partner. I have finished the round of anti-nausea meds, and I finished the "A" part of the "AC" cocktail--that only took about 15 minutes (and that sucker is the one that will be responsible for my hair loss--DAMN YOU!). Now I'm on the "C" part--which is the culprit responsible for the nausea that I'm bound to get (apparently if you are prone to motion sickness, you will more than likely get nauseous with the chemo, but they give you lots of drugs for that). I'm definitely feeling a bit rough in the belly--and a bit light headed--and my lips are cold and I'm getting a mettalic taste in my mouth.
Welcome to chemoland!
When I woke up this morning, I was sort've nervous. Now that I'm here? I'm pissed. Seriously, my predominant emotion at this moment is anger. Not big anger, just low level piss-offed-ness. Major frustration and annoyance. I mean WHO HAS TIME TO SIT IN A CHEMO CHAIR??!!! REALLY? I HAVE TO BE ON 3 DIFFERENT MEDICATIONS TO DEAL WITH THE NAUSEA THAT COMES FROM CHEMO TREATMENT???!!! And of course MY HAIR IS ABOUT TO FALL OUT IN 2 WEEKS!
On that note, let me show you some pictures we took at the wig store and at home of me with the two wigs--the first I call my "casual/sporty" wig (note the comfy black headband--and yes, this wig essentially looks exactly like my normal hair--it looks like I'm just wearing a headband):
At In the Pink
And THIS is my "going out" wig--and yes, I AM going to be teaching with this wig in the spring since my hair won't grow back in until the summer:
Outside the store
[The name of this wig is "Strawberry Syrup!" According to Jeremy, I look like a lot of women he's seen in Tokyo--go me for being fashion forward without having to bleach the hell out of my hair!]
Anyway, for whatever reason, my default emotion with all of this is anger. I am an Angry Asian girl (click here if you don't get the cartoon reference). I'm angry that this is disrupting my life, Matthew's life, the lives of my family and friends. I'm angry that I'm not going to be teaching in the fall and that I have to be hooked up to an i.v. to get chemo every other week for 16 weeks. I'm angry that my nurse navigator, Leslie, didn't give me correct information when I saw her last week about a shot that I need to have on Friday (it's a shot that will help increase my white blood cells). I'm angry that 7-10 days after each chemo treatment my white blood cell count will be low and I'll have to be careful about being around crowds and esp. around anyone who might be sick (like kids). And I'm angry that I won't be able to hug Layla on her 3rd birthday because I love Layla and want to give her a big hug and kiss. And I'm angry that I'm going to have surgery at the end of all of this and my breasts will be removed and the recovery and rehabilitation will be difficult and painful. And I'm angry at all the people who tell me to have a positive attitude or who tell me not to be angry because I think righteous anger can be productive and I have enough righteous anger to fuel a mack truck. And I'm angry at all those fucking pink ribbons and the fact that AstraZeneca, the drug company that makes tomoxifen (the drug I'll be on for 5 years that will make me go into early menopause, which also makes me angry) is the one who created "Breast Cancer Awareness Month" and they are also the same company whose parent corporation, Imperial Chemical, makes a fertilizer that is known to cause...breast cancer. And I'm just angry that I now have this worry in the back of my head that I might die--that I'm sure I won't die--and of course everyone will die one day--but I mean that the cancer will return and I might die an earlier death than I normally would because of this damn cancer.
[takes deep breath]
Truthfully, I'm probably not nearly as angry as the above rant makes me seem. I'm just tired and frustrated and annoyed. And a little pissed off. But overall I'm doing OK--I mean, there's no way to deal with this but to just deal with it. So I'm dealing with it. And on that note, let me leave you with a picture of Matthew that should be good for a laugh for all of us!
P.S. Thank you SO MUCH to everyone who signed up for Bruno walking or food drop offs for the next 16 weeks! We are bowled over by your generosity! I also wanted to say to folks who aren't able to sign up, that we would never turn away food or offers to walk Bruno--and if you notice, these aren't weekly dates, we've only listed 3 days every other week when we think we'll need help. What I'm saying is, if you wanted to come on a day that wasn't listed to drop off a dish, we'd be extremely grateful and appreciative, although no one should feel obliged to do this AT ALL. I was amazed that so many of you signed up for so many slots! Actually, I'm not amazed because we know how amazing our friends are! Anyway, I'll include the link to the google sign-up sheet here if anyone wants to see about a slot in late August/September. And if you want to just drop off a dish on a date not listed, feel free to just email me!
P.P.S. [UPDATE: 4:09pm EST] I'm at home now, lying down in my bedroom and sipping some gingerale. I seem to be exhibiting text book symptoms: I'm tired, a bit light headed, slightly naueous, and I have a slight metallic taste in my mouth. Anyway, I'm going to be resting up here for the next few days--apparently this first round of chemo should help me to predict how I'll be on subsequent rounds of chemo--at least through the AC regimen--with taxol you never know. I also thought I'd leave you with two photos of me in Chemo Chair #16 that my Mom took -- she and my Dad traded off in the visitor chair (they only let you have one visitor at a time) until Matthew came and then he took over the final half hour stretch.
Me with my laptop--I mean, what would I do if I couldn't have my laptop with me???
This photo gives you a better sense of how I'm getting the chemo treatment--you can see the i.v. line snaking into my shirt--that's where the port is--the bags with saline and the chemo drugs are above the machine.
Finally, BIG PROPS to the nurses I had today--Delma and Shelly in the oncology clinic and Julie in the Chemo infusion clinic. All three were enormously helpful and straightshooters who didn't sugar coat things for me and talked to me like the capable adult that I am. Shelly even came and found me in the chemo chair because I had forgotten to take some extra wipes to deal with cleaning my port--and Julie was THE BEST nurse for me to have during this first round. She took me on a little tour of the clinic, showed me where the bathrooms were, where the kitchen is (I can eat all the crackers and drink as much gingerale and eat as much chicken soup or tomato soup as I want) and just explained what she's found to be true for patients in her experience working in the chemo room. She's a direct no-nonsense nurse who is originally from upstate NY and she and I bonded over the fact that both of us get in trouble all the time in the South because we say things that are too direct and we can't figure out the cultural/gender codes. I *heart* Julie!