Chemo #2: I'm Bringin' Sexy Back!

Chemo session number two was not as easy as the first one. The beginning of the day was okay, but the hours following my infusion were horrible.

I know that I have several tattoos and have/had many piercings as well, but something about the whole lets-put-a-gigantic-thumbtack-looking-needle-in-your-chest just does not appeal to me. Luckily, my surgeon prescribed me nifty lidocaine cream that you put directly over your port. You rub about a nickle-sized thick, dollop of the stuff over the area (on and around it!) and seal it in with a little bit of saran-wrap. The saran-wrap ensures that the cream does not get rubbed off and seals it against your skin for maximum numbing effect. This should sit on your port for an hour. When I arrived at the SCCA (Seattle Cancer Care Alliance), the first thing they always want to do is draw blood and analyze it for WBC and other such science-y stuff. Fortunately, when they draw blood, they can also do it through your port, so all you need is one prick and it's over! (That's what she said! HAH!)

When it was time for my blood draw and port accessing, the nurse asked me right away if I wanted lidocaine. I was happy to report that I had already numbed myself for the procedure before coming. (It was nice to know that they offered it if for some reason I had not done it myself) This time, I asked that the nurse use a different bandage and explained how the last one literally fused itself to my skin. She told me that they had special bandages for people with really sensitive skin. This bandage, later on, was so much easier to remove than the first. I am SO glad that I asked for it.
Anyway, she took off my saran-wrap, scrubbed the area with this really weird looking sanitizing wand with alcohol on the end. It looked a lot like those little toilet scrubber things you see on TV. She scrubbed for a good long time. I guess take no chances, eh?

Then she put on a fresh set of gloves and opened up all of the packaging needed for the procedure. The poked the area to ensure it was sufficiently numb and gave me a 1-2-3 countdown. The poke was something more like a lot of pressure. As if someone took their index finger and pushed it into the space just beneath your collarbone. It was a little weird, but I didn't really feel much. I was glad for that! What was even more amazing was that she took my blood without me even knowing. I was just so focused on the pressure that I didn't even notice that she took it. She also slyly covered up the container that held my blood sample with one of the wrappers from the materials she used. I didn't even see it, which was good because I was already feeling a little squeamish. I am a lidocaine cream convert!!

Later on in the infusion room...
Instead of receiving all of my anti-nausea drugs by IV, half of them were given to me in tablet form just before my infusion. Personally, this did not work out well for me. During chemo, I was fine but about 3-4 hours after, I was doubled over in pain and severely nauseated all evening. I took a hot bath and popped a Zofran (one of my many anti-nausea drugs). It soon kicked in, but it still had the effect of making me feel like crap for the rest of the evening and the next day. I need to learn to overlap my nausea medications so that I am never feeling like crap again.

Anyway, two cool things happened to me today. I bought myself a rockin' new pair of converse and my awesome cousin, Melissa, sent me TWO sweet wigs from my wishlist! Check 'em out!

I LOVE both of them! Which do you like? Take the poll!



And here are the chucks...Ready for some cancer ass-kicking! (Complete with skull and burning heart)


p.s.: Happy New Year!

Prep'ing for chemo #2

Tomorrow is my second chemo infusion. Woooo! One cycle down, 5 to go! (2 infusions per cycle, just FYI in case you are not in the loop)

Packing my bag for chemo infusions is complicated. I never know what exactly I'll need, but I always seem to over-pack. Compared to other chemo newbies, apparently, I'm much less anal. That fact does not change the feeling that I am packing a diaper bag for a toddler or something.

Here's what's in my bag currently:
-Little baggie of cheerios
-Saltines
-Lemon drops
-Water bottle
-Nintendo DS and games
-A book
-My medical record accordion file
-My vitals chart/recorder (blood counts, HR, etc)
-Hand sanitizer
-My (several) medications
-Stress ball
-Eye mask (for sleeping; the lights in the infusion rooms are SO bright!)
-iPhone and earbuds for listening to music
-Change of clothes in case I'm too hot/cold/uncomfortable/whatever

I'm probably leaving something (or several things) out...

"Food! Glorious Food! Peas, Porridge and Custard...!" etc.

Yeah I feel the same way...




Ugh, I swear...if I have to get another bandage after chemo session number 2 on Wednesday, I am going to try to talk the nurses out of it. The whole area where they had placed and removed bandages was angry and irritated for two whole weeks. Now that it is healing (the incision from the port placement and the bandage removal) is itching like HELL. The whole area is still bruised from the surgery too, so my unconscious impulse to start itching sends me rolling on the floor in pain. The lovely systemic itching symptoms have not returned after my first chemo, thankfully. However, my random Hodge- chest/back pains are here to stay, but I admit, they are much less frequent.

So, the fam came to visit and we have been going out to eat lots, not to mention the fact that my mom is a holiday fudge-making fiend! Eating is still a challenge. Chemo has the wonderful effect of zapping your appetite and making even your fave foods smell like the sewer. One of four possible scenarios usually occurs: 1) I feel like shit and don't want to eat..so I don't 2) I was genuinely hungry, ate what I wanted and now feel like throwing up 3)I don't feel like eating but haven't eaten since yesterday night and I know I need to so, I do and then I feel like throwing up OR 4) Holy shit! I'm actually hungry, I ate, now I feel okay. Not great, but average. Eating a BBQ Chicken Wrap at Red Robin, greasy Mongolian Beef Chinese take-out or a Teriyaki Burger from Carl's Jr. are probably not the best choices, but when the fam needs to eat, that's that! Ah, gone are the days of vegetarianism...

You know what I dream about constantly? Going completely organic, fair trade and eating mostly raw foods. I am just not in an enviornment that supports that unfortunately. I do not trust myself to choose that over what lies around the house all day. My mind goes through all of the justifications for not taking the big step forward, some of which are legitimate and NOT just excuses. My biggest concern is that I'm broke! I'm living in my parents' spare bedroom. I am not in a place to spend that kind of money nor am I in a position to ask them to spend that kind of money on groceries. Maybe I should volunteer to do the grocery shopping, so I can start buying the kinds of foods that appeal to me/are organic instead of conventionally grown?






In other news: Rosie (also known as Rosalita) is being admitted to the Teddy Bear Hospital. Her fur is dingy and dirty, she needs more stuffing and her eye is starting to fall out. I am too scared to wash her at home. I have bad memories of a stuffed cat that fell in a mud puddle and was not the same after the washing machine. So, I've decided to hire a professional. I hope that she will return from her hospital stay well-stuffed, clean and like a brand new Rosie! I haven't heard from the teddy bear doc yet, but we're waiting. So far, her damage is minimal, so no major surgery!

The Aftermath

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” --Bill Cosby

Immediately following my first chemo therapy treatment, I was so surprised to feel perfectly fine, except of course for the pain caused by my port-placement surgery. What I did not expect was how I was going to feel a few days following my first chemotherapy session.

It wasn't hard to sleep, however, thanks to the multitude of anti-nausea drugs I was prescribed. They had the lovely side-effect of drowsiness, which was also given to fight the jittery-ness and insomnia caused by the chemo-infused steroids. Nausea, bone/joint pain (actually more like aching), day-time fatigue (despite the fact that I was sleeping 12+ hours a night sometimes) and the random fluctuation between chills and fever were the only things I had to grapple with. I began to realize that small, frequent meals and bed-side saltines were my best allies. Long soaks in the bathtub helped with the body aches and kept the chills at bay. In all, it felt like I had a bad case of the flu, minus the coughing, sneezing and congestion. I started to feel like a normal person again after day five and was even able to do some light housekeeping in our Idaho townhouse (before leaving for another two months) and finish my Christmas shopping.

I was able to remove the huge bandage that covered the incision site, but I swear, my skin must have fused with the adhesive because that sucker took several hours to remove.
I've decided to resort to home-modified cloth band-aids. Unfortunately, the only one we had in our whole damn house were these camo bandages. At least they make me look bad ass, right?


Of all the shit that cancer can do to you, the one good thing that it does is give you perspective. When I got an obnoxious notice from the WSU libraries about my "missing" (overdue) books, I basically shrugged and had David write them a letter about my circumstances and mailed them my library books. My disease was discovered on November 3rd, so I have been over 300 miles away from my place and unable to get my books until David made a special trip to Idaho for them. They wanted me pay to replace the texts because it had been so long. The letter essentially told them to go screw themselves and that we're not paying the charges (of course, written a little more politely than that!). Normally, a $300.00+ charge on my student account would have me doing back-flips to try to fix the problem, but now my reaction has been to say, "yeah, whatever". Things tend to sort themselves out with just a little effort and a major reduction in stress. That also applies to my treatments too. Even though they scare me a little and I am somewhat nervous, it is easier for me to avoid thinking about it. Some might call it denial, but I call it survival. I guess whatever works, right?

Check out my snazzy headwrap from Cai!

Facing potential baldness with a neato scarf that supports global social justice! Thanks Cai!

Recooping PLUS!!! Gross Pictures

Well, yesterday was interesting.

(Please forgive the brevity/spelling and grammar errors of this post; I am both heavily medicated and tired)

I could hardly sleep the night before, because I was pretty nervous, but I was able to steel up and get through it. We arrived at the SCCA, signed in and got screened for cold/flu. I went in to get a blood draw and the nurse was kind enough to lie to me and gave me an IV rather than simply collecting blood (because I was so nervous) so I didn't need to get my arm pricked again. After they took my blood for examination (checking white blood cell counts, checking for anemia etc), I headed upstairs to the radiology department. I flashed my fancy green card with my identification number (like one of those FBI agents you see on TV) and got a wrist band in return. It was only a few minutes before I was called back. Rachel was my nurse and she was SO sweet. She kept me informed throughout the whole procedure; from beginning to end. She escorted me into a dressing room and got out a pair of scrubs for pants and a typical hospital gown for the top. After I got dressed and locked up my clothes and belongings, I was escorted to my gurney where I was hooked up to fluids and anti-biotics. Rachel explained using a cool realistic model what the port should look and feel like. It put me at ease to actually see one in person. Much smaller than I thought; the size of a nickle. Which was pretty impressive.

Soon after, they started me on a bag of antibiotics (since I would be receiving chemo later in the afternoon) and left to tend to another patient's surgery. Once they were finished with the other patient, I was wheeled into another room and the surgeon met with me. He was really kind and sweet; he put his palm on my shoulder and held my hand with the other. He looked directly into my eyes and talked to me about how he would be putting the port in. He brought out an ultrasound machine to examine the artery in neck, just to make sure that it was clear and healthy. He gave the okay and we discussed where the port should go in my chest. Since there is a cancerous mass on the right side of my chest, we opted to put the port in the left side instead. He marked the site for insertion with a surgical pen and then soon after, I walked into the OR after saying goodbye to David and my parents.
They escorted me to an interesting looking table. It was a lot like the PET scan table, except with a big X-Ray machine hanging over my head. The nurses and staff hooked me up to all sorts of monitoring machines. I could hear my very nervous heart beating. They were good about explaining everything, but I was really freaked out about this surgery and tears started flowing. Rachel, my nurse, stood by my side and talked to me, wiped my tears away with a tissue and made me feel really cared about. She administered the "happy drugs", which made me really relaxed and they prepped my neck for surgery using a really cold iodine solution. I was asleep pretty soon and I remembered nothing about it after wards. (I was really concerned that I would remember things, but the IV meds had an amnesic effect) They needed me to be in "twilight" (no, not the vampire books/movies) so I could take verbal directions. They need to regularly X-ray my chest throughout the surgery to be sure that the port was placed properly. I awoke and was pushed into the recovery room, of course, encouraged to eat and drink (despite the fact that I don't have any negative reactions to sedation). I was lucky because they accessed my chest port while I was still asleep, so I didn't have to be traumatized again when I needed the infusion later that day. I had some time to recover and while the pain meds were still in effect, I was allowed to dress and go directly to my doctor's appointment. The scrub pants that I wore during the surgery were really comfortable, so they ended up finding their way into my day pack. Hey!I paid for them and they're really cozy!

Here I am, with a post-surgery puffy face (and looking a little bit homeless in my hat and sweatpants...), waiting for my vital signs to be taken. You can see my recently placed port:



I met with my onco and we discussed how the chemo drugs were administered, the side effects, and how to take care of myself at home. Then, he looked at the port and agreed that it looked nice and answered a few of my questions. We also talked about keeping a record of my white blood cell counts and any symptoms that I had. With that, I was sent off with a bunch of prescriptions; two drugs for the surgery, three drugs for the nausea and side effects of chemo. We took the elevator to the 5th floor infusion rooms. I checked in, again flashing my fancy green card, and got a pink piece of paper that, I was told, was for the nurse to keep track of my medications. Mom and Dad went to fill my prescriptions at the SCCA pharmacy and I was called into get my infusion. I was feeling pretty nervous; this was my first chemo! I sat in the comfy, plastic covered recliner and waited for the staff to notice me. Soon, a nurse came in and introduced herself as Nikki and she asked me some questions about how I was feeling about my first chemo and any prior medical problems etc. Afterward, she hooked me up to a saline solution to be administered through my port. She took off some of the dressings used to keep the huber needle (a special IV needle used only for chest ports) in place. She hooked up the end to an automated machine which pushed sterile saline through the port. It was the weirdest sensation. It felt like there was cold water rushing into my heart, which was quickly warmed up and pumped into my fingers until the chill dissipated. Nurse Nikki explained that before administering chemo, my port must be cleared with saline and heparin which is a blood thinner. This prevents the port from getting clotted or blocked by the body's natural reaction to the presence of foreign objects. She explained that three of the drugs I would be receiving must be "pushed" (administered) manually and the last drug I would receive is administered via a typical drip. She gave me two pills of Zofran, a strong anti-nausea drug and I got more fluids in a drip that took 30 minutes to administer. During this time, the staff and nurses gave me a tour of the facilities while hooked up to the machine. Here's a lovely picture of me taking my stroll and a trip to the restroom (p.s. SCCA is sooo progressive! They have safe-space signs on all of the bathroom doors):





Needless to say, the infusion division was pretty posh. Each patient has their own room, cozy bed, and cable TV. The facilities also have full kitchenettes. They are completely stocked with snacks, drinks, and food. That is a huge plus because sometimes, patients are there all day without a proper meal. (I had chocolate milk)

After we returned and my anti-nausea drugs were administered, the nurse checked the port's effectiveness. In order to do this, they have to first do a "blood return". This is a fancy was of describing the process of pulling out a little bit of blood from the artery via the port's external catheter to be sure it is not blocked or painful for the patient. This felt fine, but OMG it was weird to look at running through the external catheter! I had to whistle and stare at the ceiling in order to prevent myself from running out the room. After she was satisfied that the port was accessed properly, she pushed the blood back into my artery with a little saline. Soon after, she gave me a small amount of a couple of the drugs known to cause a serious allergic reaction in a small number of cancer patients and watched for any reactions. Luckily, I showed no signs of allergy to these drugs and they moved forward with the chemo. Before the nurse could administer the chemo drugs, I had to recite my full name and birthdate and she donned a special blue gown, purple extra thick gloves and a surgical cap. When I asked her why she had to wear the gown, she explained that it can be hazardous to be exposed to chemo drugs everyday so she needed to take precautions. This had the unintended effect of making me a little nervous about my own reaction to the drugs and worried about the staff that had to handle this stuff. Anyway...

The drugs used to treat Hodgkin's lymphoma is called "ABVD", which is an acronym for 4 complicated sounding drugs that are all given to me during each infusion.
The first drug in the ABVD regimin is called, Adriamycin, and it is bright red, which freaked out David when he found out. It did look a little like blood going in. Luckily, he got over it and was a good supporter!

(Nikki warned me that upon my first bathroom break, this drug will look the same coming out, so I know ahead of time. Apparently, a lot patients don't know that the first time!) Below is a lovely picture of the gignormous needle of Adriamycin being administered if you're into that sort of thing. The blue connector is used to catch any stray bubbles. (You can imagine that a bubble of air in your heart can be a bad thing.) I felt literally nothing other than a little annoyance and chilliness in my port. I felt pretty good at this point, but it took a lot of effort to avoid thinking of how weird it felt and the fact that this TOXIC shit was going into my heart and subsequently pumped into my circulatory system. It is fascinating if you think about it, but also a little barbaric at the same time...


After the A in ABVD was pushed into my port, the nurse cleared my port again with saline, then it was time for the B drug called Bleomyacin. This drug was also pushed manually. This went fine just like the previous drug and was pushed manually by my nurse. As soon as I was hooked up to the third drug, Vinblastine, I immediately started to feel a little queasy and had a strong metallic taste in my mouth. David got the cue and broke out the little baggies of cheerios, saltines and lemon drops. The nurse had me pop an Ativan into my mouth to immediately combat the nausea. I ate a little and drank copious amounts of water and I felt sleep soon after. I closed my eyes for the rest of my chemo and fell asleep until the IV machine beeped loudly to alert staff that the bag was empty. The nurse came in and squeezed the remainder into my IV catheter and waited for it to finish dripping. Once finished, she flushed the port with saline again. Then it was time to take out the huber needle and cover up my newly inserted port with fresh dressings. This was really nerve racking since the huber needle looks something like a cross between a butterfly and thumbtack. Here is a picture of the whole system that is used to administer the drugs.

The purple thing with the long white catheter is the port; this is all underneath the skin. The rest is what is on the outside. The yellow thing is the huber needle used to access the port. The little "wings" basically lock so the needle doesn't move around too much.
Okay so.. that is IODINE. NOT blood, I promise. (photos courtesy of the blog from "Chasing Away Salt Water")

I was lucky that I didn't have to have it accessed while I'm conscious. Good Gods, that needle looks like a thumbtack, I just can't get over it. Anywho, after the huber needle was removed, Nikki put a cool bandage that was lined with a weird soft, gel. The gel covered the incision site and the skin covering the port.

I went home that night and felt not much different. I was a little queasy on the way home, I think mostly because I didn't have a full meal, but I felt fine. David helped me into my PJ's because my left side was killing me and propped me up with pillows for the night. My Ativan really helped me relax throughout the ride and in bed, but I had some of the weirdest dreams...

...yet, I slept surprisingly well.

Port Surgery and First Chemo Tomorrow!

Tomorrow is my port surgery followed immediately by my first chemotherapy infusion. I am extremely anxious and I hope that I will be too drugged up to remember anything from my surgery. I am feeling okay with the idea of chemo, but I am very nervous about feeling nauseated. I hope that the anti-nausea drugs will work their magic... I absolutely hate that feeling. I will update more about my first chemo treatment later when I've had time to recuperate. Keep me in your thoughts, folks!

PARTAYYYY

Good news! My PET Scan showed no signs of spread other than what is evident in CT and chest X-rays!! Woooo! DRINKS (virgin) ALL AROUND! (yes, that is my artwork. Thank you...thank you *bows*)

Losin' the Locks, Rockin' the Mohawk

I decided that I wasn't going to let cancer dictate my experiences, including the loss of my curly locks. I rolled up my sleeves, took a deep breath and made an appointment with one of my favorite salons in downtown Seattle called "Vain's". It's an awesome little hole-in-the-wall rocker, alternative salon. Only they would be cool with the sort of haircut that I was looking for and would be willing to put my curly hair into mini ponytails for donation to "Locks of Love".
I decided to get my hair cut in two increments. The first haircut was a boy-cut, to help me get used to my lack of hair in general. The second, was to buzz it short just before chemo started so there is very little to come out when my hair starts falling out. I was so happy with the first hair cut. It was the perfect length and I am even considering going back to it as soon as I get my hair back.



Today, I cut the remainder of my hair and for now I will have to deal with the buzz cut (with elbow room for a mini 'hawk. The picture does not do it justice however and this is after I washed the gunk out. Here is a better one.)



Earlier today, before my buzz haircut, I had my first PET scan. This scan is intended to confirm the staging of my cancer and in order to do this, I had to be injected with a radioactive sugar substance. Apparently, cancer cells metabolize much faster than normal cells, so this radioactive tracer will show up in the scan as a grey/black area. I hate to say it, but am SOOO looking forward to getting my port put in, because I am freaking SICK of getting IVs in my arms/hands. (My arms are starting to resemble that of a junkie's) After I checked in on the 2nd floor (the radiology dept), they escorted me into a small room with those recognizable IV/blood work recliners. After a establishing baseline temperature and blood pressure and a lengthy survey about what I ate the night before, a nurse came in to start my IV. Unlike the dumbass nurse that gave me lidocane before my biopsy, she put a heating pad on my arms. She explained that lidocane does not help and is counter productive, constricting the veins and causing pain in the injection site. What is the point of constricting the veins if you're trying to find one for an IV? Made sense to me. I knew that wasn't normal. She did a pretty good job with the IV; quick, clean, professional. I also got a nifty arm sock to keep all of the IV tubes etc in place and ready for the radioactive material.
After about 30 minutes, another nurse came in to talk to me and flush my IV with saline. He told David that he would have to leave the room and that no one could disturb me after the radioactive medicine had been administered via IV. David and I said goodbye and the nurse returned with a weird-looking titanium container. He twisted the titanium container open, revealing a "hidden" needle. He took down the time and injected the radioactive glucose infusion through the IV catheter. He instructed me that I would have to wait 45-50 minutes for the cells to metabolize the tracer. He gave me a blanket and turned off the lights. Suprisingly, the time went quickly even though I spent the time watching the clock and counting ceiling tiles. Thetechnician came to get me and escorted me into the scan room. The PET scan is like a bigger, more grandiose CT machine and it takes triple the amount of time. It took 45 minutes for the whole scan to be completed; all with my arms over my head. In order for the scan to be successful, I have to lie completely still in the weird cradle-like countertop. I was fine for the first 20-25 minutes, but my toes were numb for the rest of the scan. My arms were killing me, despite the technician's attempt to make it more comfortable for me. She rolled up towels and put a pillow underneath my wrists,but eventually, the pillow was not helpful at all and it put my arms in an uncomfortable position. At one point, it hurt so badly that I started to figet and carefully try to find a more comfortable position. Then I heard a booming voice, "Please continue to hold still. Only 10 more minutes." My body was screaming, "TEN MORE MINUTES?! My shoulders can't handle 10 more minutes!!", but I managed to make it through with lots of deep breathing and tears. Anyway... In sum, I was a good girl and made it through my horrible scan. David took me to lunch and a movie afterwards, which was a nice way to waste time before my haircut. And to think...I will need a PET scan after every 2 to 3 cycles of chemo. Ugh.

Can robot lady...learn to love?

The first line reads, "Congratulations on your new power port."
Ugh, excuse me? Congratulations on getting a medical device typically given to cancer patients?!?

Yeah, I'd have the same look on my face if I was told that I needed a port placed UNDER MY SKIN AND INSERTED INTO THE ARTERY GOING DIRECTLY INTO MY HEART.



Okay so, I know I talked about curbing the "jaded", but this is ridiculous. I am NOT happy about needing this.

That is all.

My First Onco Meeting

My sister must have really pulled some strings for me because now I am the patient of Dr. Stephen Petersdorf of Seattle Cancer Care Alliance; the treatment center for Fred Hutchinson Cancer Research and the primary oncologist for Paul -freakin- Allen! Yes, that's right, Co-founder of Microsoft and Hodgkin's and non-Hodgkin's Lymphoma survivor. Pretty sweet, huh?

Anyway, I had my first oncology appointment at Fred Hutchinson Cancer Research Center (Seattle Cancer Care Alliance). I awoke that morning at 5:30am for an 8:30am check-in time. I am staying with my parents and Fred Hutch is about an hour away. Seattle morning traffic is like hell on earth, but we breezed through the highway without a hitch; a few bottle necks with traffic but all was well. We reached Fred Hutch 10 minutes before my appointment time, so we were rushing to find a place to park. (Driving David's car is like driving a boat, so finding the perfect spot can be daunting!) I check in at the front desk, I'm screened for cold/flu symptoms and then given orders to go to the 4th floor. I filled out papers, about whoknowswhat because I was so nervous, and waited for my name to be called. It only took them about five minutes until they called me back. I was escorted through a hallway lined with what looked like Smith professors' offices and taken into the typical examination room. The nurse took some baseline information, such as my blood pressure and heart rate (which was through the roof because I was nervous), temperature and basic medical history. Soon after, I met with the Fellow that works with my primary oncologist, Dr. Mary Philips. She asked me about how I discovered the lump, about any symptoms which I had been having (which were pretty much nil) etc. After the questionnaire, she took the list of questions from my trembling hand and said that she and Dr. Petersdorf, my primary oncologist (who is so good that celebrities see him for their cancer care. Did I mention that my doc is the oncologist for Paul Allen, co-founder of Microsoft??), were going to examine my scans quickly and look at my questions and then come back and discuss specifics. We waited approximately 30 minutes and David was getting all jittery and bored, so he was goofing around with surgical masks and telling corny jokes the whole time we were waiting. It helped keep my mind off of everything.
When they came back, they explained that they would require one more test to complete my staging. Staging refers to the extent of the cancer's spread throughout the body, though they were confident that it was limited to a specific area in my chest based on some of my other scans and blood work. They look at how far it has spread throughout the body using a PET scan and then they give you a level 1-4; 1 being early and 4 being late stage. Stages 1 and 2 are favorable, whereas 3 and 4 are less favorable and harder to treat. Their initial feelings were that I was at Stage 2, simply because of how large the mass was in my chest as well as the lack of spread to my spleen and liver and other lymph nodes. The PET scan will confirm and solidify their hypothesis.
Then we talked about treatment (dundun dunnnnnn...!). I will be receiving chemotherapy and possibly radiation at the end of my chemotherapy cycle. I will be receiving a drug regimen called ABVD. It is a combination of four drugs that are designed to kill cells that are fast multipliers; sadly this includes white blood cells, hair, nails, eyelashes etc and, of course, cancer cells. In order to receive chemo, a device referred to as a "port-a-cath", will be surgically inserted into the area just underneath my collarbone. Being a cancer patient means getting pricked with needles ALL THE FREAKING TIME. A port reduces the pain and discomfort associated with repetitive vein access as well as delivering the chemotherapy drugs (and any other drugs that I may need later) directly into the blood stream. The port has a long catheter (tubing) that accesses the artery in my heart. This reduces the scarring of the veins typically used for an IV because chemo drugs are so harsh that they can cause irreparable damage. It also takes much longer via IV to get chemo than with the port. Here is more info on the port if you want to know more, but I admit it is a little gruesome. http://en.wikipedia.org/wiki/Port_(medical)

My port will be inserted on December 16th and I will be getting my first chemo treatment on the same day (UGH). At least it'll be done when I'm on so many drugs that I won't know what is going on. :) I will be getting 4-6 cycles (2 chemo treatments per cycle) total, which should take me about 6 months if all goes well. Depending on how I respond to chemo, I may or may not need radiation. They're worried about doing radiation so close to my heart and breast (because of family history of breast cancer).

Soooo, it looks like I'm going to have to do away with my hair before I start. I hear that people often lose their hair soon after their first treatment of ABVD. I'm going to shave my head a couple of days before that. I'm going to take a lot of pictures, especially when I'm rockin' the mohawk for a couple of minutes.

Anyway, the facilities were new, clean, and pleasant. The people were genuine and caring; very different from what I had expected. I feel pretty confident that this is the place for me.

Don't Rain On My Parade: Choosing "Joy" over "Jaded"

Can you tell I like musicals? (P.S. I only borrowed this, because it was cute!)


I had a lot of time to think about my cancer experience during my recovery from the excisional biopsy. I was angry that I had to play the waiting game again and spend my time waiting for the inevitable, again. I spent countless nights reading statistics and medical journals in a desperate attempt to understand what I was facing. While I learned a lot about my disease and the care I would need, it also had the unfortunate side effect of making me feel hopeless and fearful.

One morning I woke up, feeling energized for the first time in a long while. The sun was shining into the room through the blue paper shades, coloring the room in a pleasant hue. I stretched and looked to my right where David was passed out, asleep next to me. I looked at him and suddenly felt grateful for all of the support and love that has surrounded me during my time of need. I felt like doing something. I felt like getting up, showering, eating breakfast and going shopping like a normal human being.

I decided that it was time to put the angry, pissed off, stressed graduate student away for a while.

Later that day, I asked David to go with me to the craft store. I bought a bright green photo box, stickers and put all of the things I collected through my cancer adventures so far in the box; the blue hair cap from my surgery, the bright red "ALLERGY!" bracelet, the gray no-slip hospital socks, newspaper clippings and cartoons, and ticket stubs. (Of course, with more things to come.) I wasn't picky about the stickers I bought; I picked up whatever appealed to me and I covered that photo box with zillions of stickers, patterns and cut outs of things that made me feel good.



I also bought this mini photo album kit that inspired the name of this blog. It had all sorts of stickers with corny inspirational phrases and statements on them such as, "You are gorgeous!", "Always in style!", "Friends Forever!!!" "Such Good Memories", and of course, "Find Joy in the Journey". As corny as the little photo album kit was, I really liked the idea of finding joy. It was such a paradigm shift for me. The idea of happiness was always something that I believed, in a weird way, would find me with hard work, good schooling and a list of references. Not the other way around. As hard as this was going to be, I realized that I can't spend all of my time being angry, though it is important to acknowledge and honor angry feelings about cancer. I still say, "F-you cancer!" but I won't let it rain on my parade.

Okay I promise this is the end of the "Fiddler on the Roof" subtitles...

The day of my biopsy with Dr. D, I had a pretty difficult time waking up in the morning. Needless to say, I was grumpy as hell that I had to do a second surgery and had to be there at the crack of dawn no less. But I was good and showered with this special medical grade soap designed to cut back on the germs and bacteria that like to hang out on your skin and thereby reduce your risk of getting an infection. After I showered and put on my sweatpants, my mom braided my hair and we left for the hospital.

Once we arrived, I checked in at the front counter. Because my insurance is a POS, I had to pay $1450.00 up-front before I could be prep'ed for surgery. (My parents were able to cover me in that respect, so they get some props!) They strapped a fancy blue wrist band on me and a separate bright red bracelet that read, "ALLERGY!" in bold black letters; I guess to remind folks that are dumb enough to forget to check my chart.

They took me into an outpatient surgical room and had me pee in a cup to prove that I'm not pregnant and had me change into one of those sexy hospital gowns that don't close properly. It was really cold and when I asked for another blanket, the nurse returned with a weird hose thing, which she hooked up into a wall and then sort've "plugged" into my futuristic hospital gown. It has a little vent for a hot air hose that delivers heat directly to the skin (and it came with a nifty remote control!). Soon, a nurse came in to start my IV. I always recommend that they start a line in my left arm fold (where your elbow is). I swear, he must have been the WORST nurse I've ever had. The IV insertion hurt like hell because he gave me a shot of lidocaine before inserting the IV, which is supposed to make the area numb. The unfortunate side effect of lodcaine is stinging at the injection site, so my arm was killing me the whole time. When he came back to check the line, he said that it wasn't "dripping properly", so he took it out and jammed a new line into my left hand. Of course, using the lidocaine. It hurt WAY more in my hand than it did in my arm and stung like hell. Moreover, he kept messing around with it to make sure it was dripping properly. What did you think was going to happen when you don't let me eat or drink for 12 hours?! I will be slightly dehydrated, don't you think?! Despite the stinging, I was fine; annoyed, but fine.

Later, Dr. D came in to talk to me and mark the area to be biopsied with a surgical pen. Then the anesthesiologist, who are my best friends during these times, gave me a big ole dose of injectable Valium to reduce anxiety. This was a wonderdrug. I did not care about a thing in the world and frankly, the world was spinning and my eyelids were heavy. I felt extremely relaxed and sleepy and when it came time to go to the OR, I didn't care either. They helped me onto the OR counter and they placed an oxygen mask on me. The anesthesiologist came over to my IV and asked me to start taking deep breaths. I don't remember blacking out; in fact, I remember distinctly thinking to myself, "Why am I not unconscious yet?" and then after that, everything is blank. I guess the drugs are slightly amnesic and I did, eventually, black out.

I heard things before I saw things; the coming and going of people, the beeps of heart monitors, the rolling wheels of carts and hospital beds, the scuffling of nurse's shoes. I heard people talking to me and asking me questions, but I was still unable to open my eyes. When I finally awoke, I was in much more pain than when I awoke after the CT biopsy. My neck was sore and stiff and all of my limbs felt like they were tied down with weights. It felt like a long time had passed before I was able to open my eyes. The first thing I saw was the nurse bringing water and of course, pudding and crackers. They held a cup of water to my lips and urged me to drink. Another nurse came by with an ice pack and put it on my left shoulder, cradled into my neck over the incision. After I had woken up a little, I was taken to another room via wheelchair and put into a special recliner that lifts the legs up. I was given a good hour to recover and then had my IV removed and given my discharge papers. The nurses insisted that they wheel me out in a wheel chair. I felt a little stupid and I found myself wondering if I really needed it.

...Find me a Find, Catch me a Catch.

I switched over my surgical needs to my Mom's surgeon, who I will refer to as Dr. D. I was pleased to find that she was part of the Seattle Cancer Care Alliance and was very professional, compassionate and thorough. I brought in tow to my first meeting with Dr. D, my sister who flew over last minute, and David who was finally able to join me and of course my two parents. My sister really helped me get my s**t together mentally and I am not sure if I would have been able to take control of my care if she hadn't been there.

I asked that my parents and sister stay in the waiting area and asked David to come with me to take notes. We waited only a few short minutes and Cara, the surgeon's nurse, came to talk to me and get a little medical history. We discussed how I discovered the lump, how it felt, did it hurt, what have other docs said and so forth. (At this time, all of this information became a script because I had told the same story a dozen times already.) The nurse gathered CD copies of my scans and left the room. Soon, Dr. D returned, shook my hand and introduced herself. She asked me to explain what I know already, which made me feel like a n00b, but she felt comfortable that I understood what was going on. She palpitated the mass over my collarbone and asked me why the previous surgeon did not excise the mass here instead of doing an invasive and painful procedure in my chest. Moreover, she told me that no doctor should be able to determine which cancer you have (or if it is even cancerous) by simply looking at scans and images (unlike the stupid doc at the university, even if she was right later down the road.)
She was confident that what I had going on was one of three things,largely because of the behavior/location of the masses in my chest: 1. Hodgkin's lymphoma (was the most likely) 2. Non-Hodgkin's lymphoma (which was the null hypothesis if it was definitely not Hodgkin's) and 3. Thymoma (which is a cancer of the thymus, a gland that sits close to the heart). She added that because of my age, Hodgkin's was extremely likely. That was a huge relief for me because Hodgkin's is very treatable. I had read about Non-Hodgkin's Lymphoma and some of the literature was frightening. They scheduled an excisional biopsy a few days later and gave me all sorts of paperwork about how to take care of the incision and the prescriptions I would need etc. I went home feeling a little more in control of things and happy that I switched my surgical care to Dr. D.

Match Maker, Match Maker Make Me a Match...

After my lymphatic abnormality was discovered on the chest X-ray, my parents drove all the way to the university and packed me up for treatment. David was unfortunately extremely sick with the flu, so he could not go with us until he was better. Also, he didn't want to get me sick now that I had to have all sorts of procedures performed on me. Unfortunately, I came down with the flu almost immediately the evening after I had left.

Before we left town, we picked up copies of the scans and headed back to my hometown. The drive felt like an eternity and my fever must have been sky high. I kept going in and out of consciousness and I had absolutely no appetite at all, except for Coke slurpees (who knows why?). What was worse was the horrid metallic taste the CT dye left in my mouth. I felt like I was sucking on aluminum foil. For some odd reason, Coke slurpees were the only thing that helped. Not mints, tic tacs, gum or any other beverage helped. Weird.

I received several phone calls throughout the 6 hour long drive as the news of my diagnosis circulated through our social networks. Honestly, I was in shambles and I hardly listened to much of anything. This was all so sudden and I was so sick that I just didn't care anymore. All I knew is that I wanted a bed, ASAP. Fortunately, I was able to rest my eyes a little on the trip, which made things pass by much more quickly. When we finally arrived back home, the first thing I wanted to do was lay down. The room was spinning and my head felt like it was full of pure cement. I took a short, cold shower to try to bring my temperature down, but I ended up just warming myself back up as soon as I crawled into bed. All night, I tossed and turned, trying to get warm or trying to cool my fickle body temperature. I awoke several times so hot I thought I was going to suffocate. Groggy, I shuffled to the bathroom and managed to turn on the shower several times that night. My parents' shower had a ledge to sit on, which came in handy when I finally passed out in the shower.

The next day, despite my horrid flu, I was taken to a local surgical clinic to get a sample of the mass in my chest. (Admittedly, I was not very empowered to handle my own medical care. I was such an emotional wreck that I sort've just went with the flow.) I received a CT guided core biopsy, which in plain language is a freakin' long needle stuck into your chest that can be seen on a screen. The purpose of this is to take some cells from the mass and test it to see if it is cancerous and what type it was. I undressed, again from the waist up, and was given a lovely cocktail of amnesic drugs via IV. (Sadly, I had become accustomed to needles at this point.) I remember that they laid me down, they put an interesting little temporary tattoo grid over my chest and then, BOOM!-- lights out.

I awoke in the recovery room laying on my stomach with a towel bunched underneath. I deduced that it was to put pressure on the needle entry area and prevent bruising. I blinked long and hard, trying to adjust my eyes to light. I took a deep breath in, the kind you do when you wake up from a long sleep, and suddenly felt a dull ache in my chest. From my mouth eminated a pained, animalistic, "Uhnnnn..ohgod..". Nurse Zane (literally, her name was Zane) must have heard and came to check on me. She helped me turn over on my back. The first thing I noticed about Nurse Zane was that there were bowling balls and pins printed all over her scrubs. I forced a smile and said, "Bowling fan, eh?" She smiled, opening a cup of butterscotch pudding, (hospital grade, yech) "No. Not really." She shoveled big scoops of this pudding into my mouth. As soon as I was done with the first one, she opened up another one and again started shoveling it into my mouth. When I complained, she emphasized the importance of eating, "To prevent nausea". Honestly, I wasn't feeling nauseated until she started shoveling cheap, hospital grade butterscotch pudding into my mouth! At one point it became too much to bear, so I asked if they had something different, like crackers. Nurse Zane returned with an armful of different kinds of crackers and opened two packages, encouraging me to eat and suck on my ice chips. I felt like a pregnant woman. I figured that I was able to do this task on my own and I should unless I wanted Nurse Gluttony to start forcing them down my throat. I was glad to see her busy herself with other tasks than shoveling pudding into my mouth. After a couple of hours, the medications wore off and my parents came to see me. I was sent home the same day.

I waited two weeks for the results of the biopsy. The whole time, I was trying to busy myself with other things. My brain was coming up with all sorts of fanatical premonitions and it was hard to feel like a normal person. I would watch people as they drove by, living their lives without a care. I wanted to badly to be one of those people that only had to worry about their micromanaging boss, what to make for dinner or if their shirt and pants were the same shade of black. For a time, I was feeling pretty jaded. Many people I knew had all sorts of justifications for my cancer development; it's genetic, it's diet, it's stress and you're a grad student, it's just random and you can't control it, God has a plan for you, blah blah blah. At that point, I didn't care WHY I had it. I just wanted to get rid of it! You can imagine how angry I was when I found out that the sample they took during the CT guided core needle biopsy was too small to determine what kind of lymphoma I had. All they could tell me was that it was lymphoma. At that point, I was like "No s**t, Sherlock!" I had already mentally prepared for having cancer; now I was just ready for answers.

The Big "C"-- Discovery: Part 2

I turned my car around, trying to remember where the hell the local hospital was, even though I had driven past it millions of times. I tried to look it up on my iPhone, but I was so upset, that I simply just pulled into a parking lot and called my mom and my husband. I cried and I cried. I didn't know what to do or what was happening to me. I felt like I had sat there for an eternity.
I ended up being late to my CT appointment. When I arrived, the doctor was waiting for me in the radiology laboratory. She gave me a very forced and sterile hug and introduced me to the nurse and staff who were going to give me the scan. She pat my shoulder, in a weak attempt to be compassionate, and said, "If I had to have any cancer, it would be Hodgkin's. Everything is going to be fine." I nodded, but in my head I was screaming, "YOU THINK IT'S GOING TO BE FINE?! IT'S NOT FINE!! I AM NOT OKAY!" She handed me a lunch coupon for the hospital cafeteria and returned to the university clinic.
I filled out some paperwork at the radiology from desk and sat down, waiting for the staff to call me back. I felt like everyone in the waiting area was watching me as I held back sobs and tried to keep my cool. Soon, they called my name and I was escorted into a changing room. They handed me one of those very thin, powder blue hospital gowns and told to remove any clothing above my waist. I walked into a changing stall and began to remove my clothing. The intensity of the day's events ebbed and flowed out of my conscious mind, setting me into a viscious cycle of grief and numb automation.
I feared the results of the scan and my mind kept repeating all of the infinite possibilities: Maybe it was a mistake? Maybe someone else's chest X-ray had my name on it. Yes, that's it. It must be a mistake. But how could it be? I have this lump. That is definitely not normal. Oh god, what if it IS cancer?...
I started to feel panicked and the room was spinning, but I was able to calm myself, remembering the breathing exercises from my yoga class. I spoke to myself, "Long audible breaths, let go of judgment and fear". I kept repeating this mantra to myself as I took several long, audible breaths from my nose. I placed my palms on the wall, trying give myself a sense of place and presence. I kept feeling the emotions flood in and out with my breath and I fought back the urge to start ripping the stupid scratchy hospital gown apart. I was unaware that I was in the stall for several minutes and soon the nurse came to check on me. I hurried into my hospital gown and put my glasses, watch, wallet and clothing into a locker. The CT room was very cold, bright and sterile. I noticed a poster of a clown with an inlay inspirational paragraph about humor and laughter were on the ceiling. (Why anyone would put a poster of a clown on the ceiling is beyond me.) The staff told me to lie on scan's counter and explained that they would be starting an IV. UGH, I hate needles! I thought to myself, in an almost childish manner, "I've already been pricked a jillion times today! This is so unfair!"
I laid back on the counter and the nurse began smacking my left arm, looking for veins. I tried hard to breathe and stay calm, but feelings of sheer injustice kept welling up within me and I could not hold back tears. My mind was scrambling. I'm only 24, I'm young. Why do I need this? This must be a dream. The staff were speaking to me, but my inner monologue overshadowed any of their attempts to calm me and make me feel better. I heard faintly, "you should experience a warm feeling now as we inject the dye". Suddenly, my body felt like it just entered a stifling sauna and the arm with the IV felt like it was on fire. My face was flushed and I was sweating. A warm feeling? That was an understatement! Soon the whole counter shifted inward and I was instructed to lift my arms since they started the IV in my arm and not in my hand. The machine whirred and throttled forward; the great grey metal donut reached my neck and bellowed, "Breathe in. Hold your breath." The counter suddenly shifted backwards, systematically shifting me out of the circular machine as I held back the air in my lungs.
Once the scan was over, they removed my IV and I changed back into my clothes. They discharged me and told me that I could pick up the films and results later. I got into my car and called my parents. We agreed that they would come down and take me back to my hometown. There was no way that I could get a good evaluation of my illness where I was living. My doctor at the university clinic called me and asked me to come back and talk with her. When I arrived, I was escorted into her back office. She began explaining my disease and what to expect, but I took absolutely nothing in. After our meeting, I was given a written referral for an oncologist and a letter needed for medical leave.
When I got home, I walked upstairs and David was waiting for me. I just shook my head, as if I was in disbelief; tears streaming down my face. I whispered, "They think I have cancer". His lip quivered and his jaw hardened, holding back tears. He opened his arms, inviting me in for an embrace and wrapped them around me. I buried my face in his chest as he rocked me side to side. There was nothing that could be said to take this away or make it better.

The Big "C"-- Discovery: Part 1

On the morning of November 3rd, 2009, I packed my backpack worrying about a presentation I had to give later that day. In 24 hours, my world was completely turned around. In literally a matter of a few hours, I was no longer a graduate student; I was a cancer patient.

I visited my doctor that day before classes to inspect a strange lump that I found above my collar bone. I had a cold a few weeks earlier and I thought that it must have been my lymph nodes that were swollen as a response. I thought to myself, "Wait and see if it goes away. It is probably nothing." I waited and several weeks later, it had not changed from its firm, painless, grape-sized shape. That morning, I checked in at the front desk at the university's health clinic. I was soon called back and all of my baseline information was taken. Soon after, the doctor entered the room and asked me to describe the lump and show her where it was. She briskly measured and palpitated the lump, asked me to detail my family's cancer history and then ordered me to remove my shirt. I wondered, "What was that all about? Why does she want to know about that?"
She tossed me a paper modesty garment and indicating me to undress. She left the room and I dutifully donned the paper garment, which was subsequently asked to be removed upon her return. She told me to lay back and stated that she would be giving me a manual breast exam. She poked and prodded around, without saying anything and then returned to her computer and began typing, "You can put your shirt on now." Dazed, I put my clothing on, feeling tears welling up in my eyes. This was all going so fast and I was so confused. I wondered to myself, "What now..?" The doctor, still typing stated, "I've scheduled a chest x-ray and blood work for you. I'm concerned about Hodgkin's.." I must have looked confused because she looked over the brim of her glasses, annoyed, and clarified it for me, "...that's cancer. Wait here. I'll get your orders." I sat on the cold metal examination table, feeling a little violated, confused and scared. I wasn't really sure what was going on. Did I really have this thing called "Hodgkin's"? Could I really have cancer? She returned with my orders and told me to take the papers to the radiology department and laboratory, "Down the hall and to the left. I'll call you if I find anything. If I don't call you, everything is fine." I wanted to ask, "What do you expect to find?", but she left the examination room and headed down the hall in the opposite direction before I could ask. I followed the orders written on the paper and had my blood work and chest X-ray completed.
Afterward, I walked back to the main lobby and got my parking validated. As soon as I got to my car, the impact of the last couple of hours flooded my conscious mind and auto pilot turned off. I sat in my car and cried and cried and cried for Gods know how long. When I finally composed myself, I started my car and began to drive home. My phone rang as soon as I hit the highway. I picked it up and the doctor who saw me that afternoon told me that my chest X-ray was abnormal and that I probably have Hodgkin's lymphoma. There was absolutely no compassion in her voice. It was as if she was telling me that she tied her shoes this morning or that she had toast for breakfast. She also told me that I had a CT scheduled at the local hospital in 30 minutes and she was going to meet me there, so I needed to get to the hospital as soon as possible. She briskly (and 'professionally') hung up with me. My mind was a blur. How can this be happening to me? I'm a graduate student, I graduated from Smith College, I'm supposed to be writing my dissertation, I need to start applying to the Ph.D. program, I was thinking about moving to Texas, I wanted to get a second Master's in Women's Studies...or do I? I don't have time for this "Hodgkin's" s**t, what will happen to my research project? CT? What hell is a CT scan?!

And then it hit me: Ohmygod, I could have cancer?...