LONG LONG OVER-DUE

Sorry little blog. I have neglected you terribly!

I just finished a bunch of really important tasks. I finally have a moment to just do nothing before David and I start cooking for Thanksgiving tomorrow. I bought a free range, organic turkey from the Co-op this year and can spend Thanksgiving enjoying delicious food staying in my stomach. :) I can hardly believe that just last year, I was battling this terrible disease. Now here I am; full head of hair, finishing school and feeling awesome. I also completed some of the goals on my list! I went to Smith, saw my friends, and got a dog!! His name is Oliver. He's a border collie/welsh pembroke corgi mix. I love him to pieces.

He's a great foot warmer and morale booster! Amazing how animals can give you a renewed perspective and keep you on track, isn't it? Oliver reminds me to take time for myself and to enjoy the little things. For him, its a new squeaky toy, early morning cuddles in bed and the simple joy of bounding through the snow. For me, its a warm soy chai, hot baths, organic food and the smell of fresh laundry.

I've been working hard lately and I am so anxious to finish everything. The application deadline for my choice graduate program is coming and I have lots to do yet. I feel very anxious to get out of Idaho and this tiny apartment. Moving would entail better opportunities for me and for David. In some ways, I am tempted to just do the 9-5 grind. Even when I was working, I had a better quality of life as a poor retail associate than as a graduate student. I miss spoiling myself with extra lattes and buying fair trade/organic, but I know once I'm finished, it'll have all been worth it. I know that I will be proud of myself and will do something worth my time and talent.

Long Over-due Update

Whoa.. I have been really busy and didn't realize that I haven't updated this in almost a month. Sorry, my faithful blog-followers! I promise I have not disappeared!

I am really enjoying being back at school and finally tying up the lose ends. The women and gender studies classes I am taking are really easy (compared to those at Smith), but its helping me refocus and organize my thesis as well as provide me the coursework I needed. The only unfortunate side effect is that I am SO, SO busy!! I have also made a pack with the hubby to go to the gym for no less than 30 minutes; 2 days on, 1 day off (which translates to 4 to 5 days a week). My post-cancer energy has been slowly improving, which is good news. No more chest pains (stupid radiation, messin' up my lungs and heart), I sleep better and have more energy in the morning. I'm actually able to drag my ass out of bed at the crack of dawn for a cuppa joe and the occasional farmer's market. But at the end of the day like a cranky, old lady, I need to go to bed at 10:30pm because I am so wiped out. Whoever said that "There are never enough hours in the day" most definitely hit the nail on the head!

I have decided to try to work on my thesis for approximately one hour per night. It's just a huge pain in the ass right now, because I need to rework the majority of the paper and hone the focus of the analysis. I need some motivation...it's hard to delete parts written so long ago. I keep thinking to myself, "WHAT IF I MESS UP AND I NEED THAT CHAPTER LATER?!??!?!" My advisor is probably going to disapprove of the scope and breadth, but I gotta do what's rattling around in my brain! I think I have a pretty good perspective to offer and can pull off so many different factors. Let's just hope that I finally get the sort of organization and clarity needed to make it work. I just have to keep reminding myself, "What are you trying to say? Is this what you originally wanted to investigate in the thesis?". In sum, my thesis is a sucky, mess right now.

Anywho, on to cancer matters. I have another scan coming up in October. This is a critical scan because it will be approximately one year since my diagnosis. The one year mark is important, folks!! Blarghhhh I always fear the results of these scans. I keep going through all the paranoid questions, "What if they find something again?" I keep imagining the PET scan showing a teenie tiny "hot spot" somewhere random in my body, necessitating the worst treatments possible! I have this constant fear of it coming back, which I am sure is pretty ubiquitous to all cancer survivors... it just sucks that the routine scans bring back such deep fears and bad memories. It is only when the scan date approaches does my paranoia start to creep back in. *sigh* Please keep your fingers crossed! I don't know where the courage and strength would come from to battle cancer a second time around. Hopefully, from the love, strength and support of all my friends, right? :) I would definitely need a little help in that department. BUT! I am not going to assume that I have cancer again. In fact, I am determined NOT to get it again. Like I said in my Valentine's post from 2009, if the cancer dares to come back, I will kill it!!!

I'm off to bed, dear readers. I will keep you updated on the results of the scan. <3

-----------------------------------------------------------
Scan Results: Free and clear! Everything looks great! Thanks for all of your support!

First day of School on Monday

The first day of class is only a few days away. Today, it felt so good to browse through the college bookstore again. All of the books displayed adds to the infinite possibilities; makes me feel hopeful and excited. :)

I'm taking some SWAG classes while I'm working on my thesis and incompletes. I'm sure that it will keep me busy enough and will help me prepare for a new graduate program!

Wish me luck! HAPPY SCHOOL YEAR!

Think of all the women you know who will not allow themselves to be seen without makeup. I often wonder how they feel about themselves at night when they are climbing into bed with intimate partners. Are they overwhelmed with secret shame that someone sees them as they really are? Or do they sleep with race that who they really are can be celebrated or cared for only in secret?
-bell hooks

What to do about my hair?

My hair has really begun to grow back. Unfortunately, I have SUPER curly hair (and did before cancer), so I have to straight-iron the little hair that I have otherwise it looks a little funny...a short curly mop of unruly hair. It seems to have some curl there still (crossing my fingers that I'll still have ringlets!!), but it is too short to tell what kind of behavior it will have once fully grown out. The frustrating thing is that it's in an in-between phase; long and mullet-y in the back, weird shortish bangs in front. My usual approach is to straighten it as much as possible and stick a headband on it, hopefully to distract people from the fact that I have a mullet now. :p

I am SO tempted to cut it, but I figure that if I really want to go back to a short do, it would be easier to take off length than to cut it short and wait for it to grow back again. I can always decide to chop it off later, but I am really missing my curls. I guess it looks like a short, cropped bob now..?

WAYYYY back when:



Then:


Now:

GOOD NEWS: CT RESULTS

Hello lovely, lovely world! I have good news to share! (Okay, so I know the above is a PET scan image, but it is too hard to make one out of CT images. They're like slices of the body; not full sized images so its hard to appreciate.)


My post-treatment CT scan showed that my cancer is still gone and the remaining internal scar tissue has shrunk even further (my body is apparently still working on clearing out the junk chemo and radiation left behind). I'm was so happy that I could cry; even so, I knew deep down that I had kicked cancer's ass and that there was nothing to be afraid of. As all cancer survivors can attest to, fear of re-occurance is nearly universal.

Let me recap the day in details for ya'll. David and I made the 8 hour long road trip from Idaho to Washington; first stopping at his mom's house. There, we spend a few hours talking and catching up. We were also there to pick up the newest addition to our family, Willow; an adorable, sweet blonde female rat with curly fur and whisers. She was all alone and terrified of my mother in law's dog, so she came home with us; rat-loving foster parents.

After our visit, we packed up Willow for the long trip and headed our way to my hometown. From there, David dropped me off at my parent's house where I spent the night. David drove Willow back to Idaho so he could work and rest. The next morning, my Mom drove me to my appointment. Prior to the scan, I was thinking, "It's no big deal; I just have to drink some stuff so they can see inside me." Well apparently, they didn't require JUST the weird tasting CT contrast but ALSO the injectable CT contrast since they were doing the chest, abdomen and pelvic regions; basically my whole body. When I arrived, I headed to the 2nd floor radiology to have my blood drawn and an IV placed in my arm (ugh, where's my port again? Just kidding!!). The nurse seemed new to the whole thing and took for-freaking-ever to poke, get the blood, finish the IV set up and label everything. It also hurt pretty bad, considering he chose the deeper of the two vein options in my right arm (pretty much the only arm that gives good IVs).

After he FINALLY finished, he put an arm sock over my IV equipment and gave me some clear CT contrast to drink. The bottle of diluted contrast was a big sucker! Think of the contents of a full nalgene bottle and a half of this stuff that tasted like really bad drinking water with lots of minerals in it. I had to drink all of the solution over the course of one hour on an empty stomach. I read somewhere on the internet that it is easier to skip the straw and just ask for a cup. Apparently if you sip it leisurely, you won't get through the contrast in time for your allotted scan time and your brain will detect fullness before you've gotten enough down. Anyway, I managed to drink the stuff, but my stomach was hurting really badly because I had to fast prior to the scan. In sum, I was tired, grouchy and slightly nauseated.
I was able to finish the contrast just before my name was called. The techs brought me into the scan room with the "Donut of Doom", as my mother calls it (Mom is highly claustrophobic and hates the CT machine), in the center of the room. They ask me to make sure that I didn't have anything metal on; underwire, jewelry and the like. They motioned to the cradle-like table that was connected to the machine and asked me to lay down. They flushed my IV with saline which still brings back chemo memories. I almost lost it right then and there! Luckily, I practiced my deep breathing and imagery skills, preventing me from losing the contrast I had so diligently consumed.

The CT nurses/techs hooked up my IV to the injectable contrast machine, which, at the push of a button, administers a steady dose of the (as they say) warming CT contrast dye to the helpless and probably clueless patient. Once I was hooked up, they covered me with a warm sheet and the scan began. The typical whirring in and out, "breathe in...hold your breath" commands, and of course, the uncomfortable sensation that you have pee'd yourself and walked into a burning hot sauna all at once. The burning and hot feeling comes from the contrast traveling through your body. If it weren't so damned uncomfortable, it would be almost fascinating how quickly the heart pumps the contrast through your body. Let's just say that the sensation hits your bladder pretty much instantaneously...So, for the folks about to get a CT scan: YOU HAVE NOT PEE'D YOURSELF; THAT IS THE CONTRAST!!

Anyway, it was a good day despite momentary discomforts. I am just so glad that my scan was clear!

Life...or something like it

School starts again for me in a mere two and a half weeks. This month feels like it went fast. I can't believe its time for my post-treatment scan already. In three days, I'll have my first follow-up scan since completing treatment. Hopefully, there will be good results to report soon thereafter. The idea of having to get a stem cell transplant and basically restarting my immune system does not sound like something I want to have to go through.

Fear of the cancer coming back: I'm sure this is common with many cancer patients, so I know I'm not alone. Still, I am terrified that it will be back. I don't know if I could do chemo again. *sigh* David keeps telling me that my doctors were extremely confident, that's why they let me have my port taken out so early. Most cancer patients have to keep theirs for a year in case they need it again. I can't imagine what that would be like; to have a reminder of the pain, fear and sickness you experienced living under your skin. I still have trouble with the tenderness and pain of my healed port incision. I hate looking at it, but at least its not sticking up through my skin. I hated that even more.

My hair is growing like weeds. In a few months time, I think my hair will be chin length; that is if I don't get grumpy and chop it off again. I do like my boycut, but I also miss the length I once had. I haven't decided what to do yet. Apparently, my curls are here to stay though. After a shower, I forgot to blow-dry and straighten my hair. It was so unruly! Hopefully, the new growth will still have the bounce and ringlets that I miss so much. I didn't realize until I had cancer how VAIN I was about my curly hair. (or as David calls it, my 'mane')

Cancer is humbling.

:)

I find it to be poor form

for a health care conglomerate to simultaneously be considering your account for bill forgiveness as well as sending you a collections threat.

Classy.


OH! I made falafel and curry daal with carrots for dinner the other day. 'Twas delicious!!

Timeline for my life

I have made some big decisions in the past few days. With August looming and my anxiety rising, it is hard to decide how the things that I want for myself fit into the limited amount of time I have to do them.

After much consideration, I have decided to finish my Master's degree this semester and apply for a Ph.D. program in Gender and Women's Studies at Texas Women's University for Fall 2011 admission. This is a HUGE commitment and I know that there will be people who are going to tell me to be careful making such a big commitment. But after having cancer, I'm not willing to wait to do the things that I want for myself. Going to India for a few months to escape life would be LOVELY, but in all, I really need to get this degree; I want it SO badly. So much so that I think about it non-stop. I know that my life was going to take me in this direction eventually, so what better time than the present? I still have time between now and fall 2011 to go to India and finish my degree; just maybe not going for 4 whole months! :)

The great thing about this move for me will be greater acceptance for the type of research I want to do. There is SO much work to be done in the Criminal Justice discipline that I fear I won't get funding or recognition for what I want to do and for how I want to expand the discipline. Gangs, drugs and racial profiling are all neato subjects, but SO 1990's, yano? I ask where does the edge of knowledge lie? Where are places that we haven't explored yet? I see a lot of students simply repeating the type of research and scholarly interests that their advisors/professors have. I want to be unique and challenging.
I've gotten a lot of resistance from my peers and the faculty. It seems that few in the department have the ability and knowledge to support the type of research that I am interested in. I think that a degree in Women's Studies is just the next logical step for me. I am so passionate about what I do and what I believe in that it is embedded in the very fabric of my being. I never get tired of it. THAT'S how you know that it is right for you.

The second fantastic thing this move will bring is employment opportunities for David and the friendships that we so desperately miss. One of our good friends lives near TWU and let me tell you, living in rural Idaho is beautiful, but depressing. Very, very depressing. No work, no fun, no friends. I can't believe that we haven't tried to strangle each other yet!

Finally, Texas = no snow. It will be hard to cope with the lack of seasonal changes (at least the more drastic ones we're used to), but that means we don't have to think about snow tires or winter clothes ever again. Then again...I burn easily. *sigh*

Ugh, I can't believe that I'm awake at this ungodly hour! Off to bed and to dream of TWU...

It's a Party In the U.S.A.!

Today, hubby and I have a small little 4th celebration of our own planned: Grillin' soy dogs and corn on the cob, soaking in the sun, sipping diet coke all topped off with a slice of Straw-Cherry Pie and watching fireworks on the Idaho Old Spiral highway.

a PERFECT day...

The Straw-Cherry Pie, courtesy of The Hubster!


Check out my cool retro can cover; a 4th of July present from David!

Taking a little bit of home with you where ever you go

After getting cancer, you stop worrying about the consequences of minor indulgences; that extra square of organic, fair trade, ridiculously good/expensive chocolate bar your swore you were going to save for later or...that little tattoo that you've always wanted but weren't close enough to a decent artist to get.

There are a few tattoos that I have planned for myself, one of which includes a half sleeve of an open pomegrante on my right arm. The other, I've had stored in my back pocket for a few years. For me, being at Smith was like being at home with myself, my identity, my people...ME. Whenever I returned to college, I felt as if wherever I had come from was only a place I visited. I had some of the best experiences and memories at Smith. So what does this have to do with my tattoo ambitions? There is a sugar maple tree that grows next to Wilder and I remember how the "little helicopter seeds" would to fall from the branches in slow spiraling motions. I have several of these seeds pressed in textbooks and tucked away in between old school papers. It makes me smile to cross upon one of these little treasures unexpectedly. I would love to get a little one of these green and brown seeds tattooed on my wrist as a way to always carry a little bit of home with me. :)

Ranting, Poverty and Other Such Delights

Getting medical bills forgiven is nothing short of a fiasco. I've written well over four or five dozen letters to each of the institutions, specialists, cytologists, hematologists and other random doctors that are trying to extract money from me. Frankly, I'm not even sure that I ever really SAW these folks, so I've had to call and ask what procedure(s) they are billing me for. Apparently, when you have cancer, there are a bunch behind the scenes folks on your treatment team and each of them get to bill you separately for their services. Like the lovely anesthesiologist that I never really met because I was UNCONSCIOUS during my procedure; he now wants $1706.18. I think that the dumb-asses in patient accounts purposefully did not take down my insurance information correctly when I checked in. My bill states, "Insurance cannot identify patient". So, I've had to write a jillion more letters and make dozens of phone calls to get this crap straightened out. I ended up just making copies my dang insurance card and physically mailing it to them so they can't screw it up this time.

In addition to trying to figure out if I actually OWE the stated amounts, I've had to write pretty pitiful letters because I simply can't pay for this stuff. It's hard when they tell you that they can't eliminate all of your debt through charity/financial assistance programs, only some. Well, how much is "some"?!?!? The people on the other line treat me like a freeloader or talk to me like I'm lazy. I talked to someone from MultiCare about a $4k bill for a biopsy I had in November and told them over and over (in addition to the letters I sent) that I can't pay my bill. The employee on the phone said with suspicion, "You're meaning to tell me that you can't even make a small payment today, like $50.00?" YES! I am a poor, sick student who can hardly afford to feed herself and pay her bills. NO, I cannot give you money right now. Did it ever occur to you that you are not the only one trying to get me to pay for things right now? If I can't pay THEM, then I certainly can't pay YOU. Even after I asked for financial assistance information, no one seems to be able to tell me what I will eventually owe and I've been told to wait patiently for a "review" of my file and supporting documents. I need to be able to plan and figure out how much I'll be paying in monthly installments...that is if I can even get a job right now.

When I got sick, my finances were already tight. I arranged everything under the assumption that wasn't going to develop cancer and go through 6 months of sheer treatment hell. When you write these letters and call patient accounting departments, people act like you don't work hard enough; that you should be able to pay your own way for things. How can someone like me pay for a $7,000 PET scan? How could I work when I was so sick I could hardly get out of bed? Americans expect people to work despite grave illnesses. They expect them to work well into their death beds. Only after their death, it seems, is a person's medical debt forgiven. Now that I am a month and a half out of treatment, it seems that everyone is pushing me to return to work. I want to, I really do, but I have to be honest; I don't feel like the same 'ole Susie that I once was. I am extremely limited in the time of work I can pursue, largely because of where I am in my degree completion (can't teach at the university because I have incompletes on my transcripts because I got sick in the school year) and simply because I'm still recovering. My energy is still pretty low and not having a whole lot of money for proper food, it will continue to be that way for a while.

What sucks the most about my situation is that my family seems to think that everything is fine. That there is nothing wrong with me and that I'm asking for handouts when I'm asking for financial help. David and I are working so damned hard right now and it hurts to much to be treated like this. David has a job finally, but the hours are crap (less than 40 hours a month) and we don't get paid very much. I don't want to lose my apartment or my opportunity to finish school. We are living the cheapest lives possible for two adults. I spend most of my time looking for work; it has literally become a full time job for me. I don't know what more I can do right now. I WANT to focus on getting better and getting my energy and strength up, but I can't because I am so stressed about money, bills, insurance... I hate the feeling of living paycheck to paycheck and am so sick of hearing my family say, "Well, you're just going to have to make some sacrifices". Sacrifice what exactly? The only things that I could possibly "sacrifice" is my cell phone (which is the only way people can get a hold of me), laptop, wedding ring and car. Seeing as how 3 out of those 4 things are crucial to finishing my degree and getting a job, I can't sacrifice them. I don't think I could deal with the heartbreak of selling my wedding ring for rent money. We've already cut our bills down as much as possible, buying the majority of the things we need from the dollar store. Tell me, what more can I do?

Okay, I promise no more rants. I just needed to get that off my chest.

Possibly the most ridiculous peacock feather earrings of all time

I have hit the motherload, courtesy of Claire's teenie-bopper jewelry company. Each earring has 5, yes count 'em 5, beautiful peacock feathers. That's another thing to cross off my post-cancer to do list!

I WANT TO GO TO THERE

I don't care if I have to sell my soul, I AM going to do this internship in Chennai, India.

I am totally obsessed with the idea of doing anti-human trafficking advocacy and HIV/AIDs education in either Ghana, Africa or Chennai,India (and you KNOW I'd blog about it!). The only problem is that I don't know how well I would need to be in order to do this sort of stuff; and yes, I've already flooded my oncologists' inbox with questions. I know I've only been done with treatment for a month and a half or so, but I am itching to get moving with my life. I know I have to finish my degree and I will, I just want something more. I am simply not content with sitting on my butt doing nothing. I didn't get to go abroad in college because, frankly, I had no money and had to work. That's fine and all, but still, I feel like I missed out on it and will unless I do it now. Besides, think of all the amazing academic and thought provoking opportunities it could produce!!!! NOM, NOM, NOM!

Anyway, after cancer, you start to feel like if you don't get to the things you want and love to do, you may never get to. I know its not the best way of seeing things, but at least I won't miss anything awesome. I have no idea how I'm going to pay for all of my medical bills, let alone a $3,000 trip to work abroad. Right now, it is just a thought; but I know I will do it some day soon. Perhaps I can ask my parents as a Birthday and several Christmases combined? haha, ya right.

Healing nicely

I thought my blog needed a little brightening up. It IS summer after all, though you wouldn't know it with all of the rain we've had! Now that radiation is over, I'm looking forward to some dang sun! (P.S.: Check out by cute, scraggly post-chemo growth!)


Anyway, on to post-surgery life...I'm starting to heal up nicely with these special medical bras I was prescribed. They are supposed to give UBER support to the ladies and prevents the skin on my chest from stretching and thus ugly keloid scars. It seems that my granny bras are definitely doing the trick! I never knew how comfortable these little sports bras could be. I'm seriously considering switching to them full time, even though they make me flat as a pancake. Meh! who needs shapely boobies anywho? COMFORT FOR THE WIN!

I've enjoyed my post-radiation recovery so far. I've been able to do many much needed chores around the house, rest, and meditate on the things I want to do for myself. I actually started a list, which has so far included:

-More fun in general. Laugh! Lighten up, Suz!
-Find ridiculous peacock feather earrings.(I've started a collection!)
-Do some baking.
-Volunteer a little.
-Stop being lame. Be a good friend and keep in touch. Write letters/cards to friends family etc. (If you want me to send you a letter and I don't have your addy, email me!!)
-Go on more walks.
-Get back into music again. I haven't touch my instruments in years...
-Along that vein, save up for a used upright piano.
-Get a dog (but first, a job!)
-Find a job that pays you what you're worth!


Finding a job has been much harder after having cancer, eliminating many of the jobs I was able to do in college/pre-cancer. No more waitressing, food/beverage service, wacky hours or anything involving lots of physical labor. I've decided to stop the whole I'll-just-get-three-part-time-jobs thing and only apply for jobs that will pay me what I am actually worth and give me plenty of hours. Also, I don't want to be too busy to finish my degree this fall, so no more crap jobs/over-committing myself!

In sum, things are good, but I'm just waiting a job offer so I can start checking things off my list!

Port Surgery: Part Deux (Plus Gross Pictures! YAY!)

Finally..

FINALLY

The port is out.

Annnnnnnd apparently I say hilarious things when coming out of sedation.


Let me recap yesterday's events for you.

After a long and grueling plan ride home from Boston, I spent the night at my parents' house. When I came home, they had a room all prepared for me; complete with flowers on the bureau (courtsey of my mother). I slept fitfully that night, wondering what was going to happen, how I would feel afterwards and if it would be a painful procedure. Yet, the next morning, despite hours of restlessness, I felt strangely focused. I kept thinking to myself, "This is the end. There is nothing more after this. Just a few days of recouperation and that's it." It was a comforting thought, giving me increased focus as I lay waiting in the day surgery hospital bed. I was waiting for my bloodwork to be analyzed before I could have the device surgically removed from underneath my collarbone. The nurse hooked me up to a drip of preventitive antibiotics and told me some jokes as he brought a fresh bag of saline. The events of my most recent vacation flooded my memory and I felt deep pangs of loneliness for my friends. I knew that I wouldn't be so scared if they were there with me. I gritted my teeth and hardened my jaw, trying to hold back tears. I missed them dearly.

My Mom dropped me off at the 2nd floor day surgery center and waited for me in the lobby, reading a wrinkled and tired old copy of "Women's Day". I made up my mind the night before that I wanted to do this myself. I don't know why. Maybe its because mom gets nervous and queasy in the hospital, or maybe it was because I wanted to prove something to myself; that I can do it alone, that I'm strong. Either way, I was there now, by myself. I was scheduled for an 8:15 surgery and I anxiously watched the clock as the nurses asked me routine questions about my port. I met with the surgeon who had friendly green eyes and held my hand. It was almost as if he could sense how nervous and frightened I was, but respected my decision to go it alone. All of the staff paid extra attention to me and congratulated me on completing my treatment so successfully and quickly. Soon, the OR nurses wheeled me into the operating room and asked me to lay on the operating table. They introduced themselves and propped me up on a triagular shaped cushion so my head was elevated. They rolled back my hospital gown and taped it to my chest like a toga and stuck on these sticky EKG senors on my chest, back and arms. Afterward, I could hear the familiar OR room "BEEP!... BEEP!...BEEP!", measuring my heart rate. The staff placed an oxygen tube underneath my nostrils and told me that I should be getting sleepy and woozy. In a matter of moments, the whole room was spinning and the voices were fuzzy and mumbling. Feelings of deep relief washed over me, removing any semblance of anxiety from my mind. The nurse held my hand and explained that they were going to give me some Lidocaine to numb the incision site, but that is the last thing I remember.
It must have been toward the end of my surgery, but I remember waking up to a most strange sensation. It felt like someone was lacing their shoelaces in my chest. I felt no pain, but an odd sense of pulling. I assume that it was the surgeon suturing my wound. The nurses reported that as I was waking up, I said, "you're the best doctor EVER!..This doesn't hurt at all!!"

Later, I awoke in the recovery room, where the nurses offered me apple juice, crackers and pudding. From previous experiences, I was partial to the juice and crackers. Pudding and I do not have a good history. (See older posts) My mother came back briefly to talk to me, the substance of this conversation is lost with time... I have no idea what I was saying at all. She went to get my pain meds from the upstairs pharmacy and soon after she left, the nurse took out my IV and helped me dress. I borrowed a pair of my mother's fleece pajama bottoms; they had Christmas Snoopys all over them. I dont remember much about the ride home and I'm assuming that I fell asleep, but now, I'm feeling pretty good. I am definitely tender. It is really really hard to lift anything, even light things. Apparently, my port was stitched into my muscle and in order to remove it, they had to unstitch it from my chest wall. I am so pleased that I can't see the damn thing anymore; no more weird marks and lumps in my chest... no more painful car rides and seatbelts that scrape. No more bra straps to alter and resew! More importantly, my surgeon removed the ugly keloid scar and replaced it was a nicer, more cosmetic scar that will leave a very small mark behind.

Check the gross pics below! One of the bandaged up and swollen incision area. And after it has healed a bit.





I feel like myself again. :)

Pomp and Circumstance

My heart feels like it is bursting right now...So many feelings rushing through me. Graduation and reunion is always an emotional experience for me. I feel so immensely privileged and touched to have been given the time to make such fulfilling and satisfying friendships. I feel sadness and gratitude; this easily cold never have happened yet, things turned out this way--for the better no doubt!

I've said this once before, but I guess I'll say it again. Cancer has taken so many things from me; my energy, my body, my sense of certainty and so many unspoken but equally as devastating aspects of life. Nothing has ever been the same since my diagnosis. If anything has changed for the better, it is my sense of calm, quietude, and peace with the universe. I learned that I cannot control what happened to me and all of little things that come along with it. A good friend of mine once explained a concept that really resonated with me. She likened life to a looped arrow where the peak of the loop represents the time that you take, in the present moment, for yourself to just deal with everything you're experiencing; to give yourself the permission and the time to experience and cope with the feelings, emotions and needs that arise as a part of cancer treatment. I always felt like my mission during my treatment was to arrive at the end goal; naturally, remission is a pretty good goal, but being too focused on moving forward without acknowledging needs can create internal conflicts. I ignored all of my feelings of fear and vulnerability; I denied the fact that I wanted support. I didn't tell many people I was sick, even though cancer is about as serious as it can get. I never allowed myself to feel these things; mainly for survival reasons. I don't think I would have survived or done nearly as well if I had been too focused on the possibility of death.

I am giving myself permission to just be where I am right now, without worrying about all of the lofty goals I have for myself, though I always keep them in my mind. It is my goal to attempt to achieve balance in my life. That means no more dead-end jobs that don't pay enough or aren't worth my time and talents. That means going to bed at reasonable hours and letting the laundry go undone for just one more day. It is allowing myself to call in sick without feeling that the whole place is going to fall down without me as well as the permission to play hooky once or twice. Things that people *should* be doing for themselves.

Sadly, it seemed that many of the people outside of my circle of friends (not all) that I talked with had pretty trivial problems in comparison to the shit-show that is cancer. That is not to say, however, that their experiences are not important simply because it wasn't cancer or something else equally as horrible. Moreso that I had a hard time identifying with these mini-crises. This all makes me seem jaded and bitter, but don't have I a right to be right now? Perhaps this entry seems whiny and bitchy, but it is truly how I'm feeling. I had a hard time feeling patient and sensitive at times. Despite some of the frustrating aspects of graduation/reunion, I enjoyed reconnecting with my friends and solidifying and strengthening relationships that were previously just acquaintances. I am hoping that I get to see them again soon because I already miss them!


I totally forgot to mention this!! I am getting my port removed on the 21st at 7 am; the morning after returning from vacation. I am SO freakin happy to have this thing removed. It usually doesn't get removed unless they're not worried about needing to use it again. I am scared, but happy at the same time; this is the one thing that is holding me back from feeling like a normal human being. I am so excited to return to better eating, exercising, and taking time for myself as well as working/finishing school.

Long Over-Due Update: FROM IDAHO!

The past few weeks or so have been ridiculously busy. After finishing radiation treatments, we finally moved out my parents' downstairs bedroom. Who knew one could accrue so much CRAP after 7 months? We definitely had to take two trips to be officially moved. Since then, we've spent our spare time trying to find work here in Idaho (which is, I might say,a non-existent job market!) and putting away all of our things. We've also been purging and cleaning a lot, which makes everything feel new, refreshed; almost like I've been shedding a past life..the life that I had suffering with cancer. I got rid of 90% of the clothes I wore during my chemotherapy because looking at them or wearing them makes me feel sick. I can't stand them being in my drawers or in my closet, so to the donation bin they go!
Yesterday, I planted basil in the pots outside my door and started germinating my sunflower seeds, which will, when hardy enough, grow against the fence in our backyard. It made me think of Piper a little and caused a twinge of Smith-homesickness.
Oh, how I've missed this place! The crops are beginning to sprout along the hills, shading them in gentle green and tawny curves. The sparrows and chickadees are scrounging the ground and you can see quail and their hatchlings hurrying along the dusty country roads. I can't wait until my sunflowers are fully grown! I often wish for a nice little house with a small patch of land where I can start a vegetable and herb garden. I guess after so much turmoil, I'm looking for simplicity and peace; to go back to a 'normal' life. I'll be there soon, I'm sure.

I am THRILLED to report that my hair is looking more full and thicker everyday. Right now, I'm even contemplating a haircut because it is so long in the back! Right now, my bangs are long enough to be swept to one side, making for a choppy, cropped pixie cut look. No more friar tuck, thankfully. I bet everyone will be surprised when I see them at reunion. My hair is incredibly short compared to what I used to have; 12+ inches of red Shirley Temple curls! The only thing that's still growing in are my STUPID eyebrows. I guess there is always something!

Horrible Tattoo Nightmare

Last night, I had a horrible dream that I walked into a seedy tattoo parlor and wanted to get a Winnie the Pooh tattoo. AUUUGHHHHH OMG, I woke up in a pool of sweat. If I am going to get any tattoo after all of this, it definitely WON'T be a Winne the Pooh tattoo!

The good news, however, is that I only have 5 more days of radiation. The treatments have been pretty easy until the end of last week when I developed a chronic lump in my throat.. Oh and the constant sore throat is just pure agony! But soon, it'll be all over and I can start moving back to Idaho. I miss school, my house, the golden rolling hills...Soon, I can go back to all of that and start over!

Rockin' the Friar Tuck and Other Such News

My friends and family, being the sweet and caring people that they are, never told me that I had a bald spot on the back of my head. I knew that the hair on the top of my head was very, very thin (so thin that you can see much of my scalp), but I had no idea that it was THAT thin in back. It looks extra stupid because I have perfectly fine hair around the sides of my head, making it seem like I'm one good shed away from looking like Friar Tuck. At first, I thought that the hair that was was left was growing long in the back and I thought I'd be destined for a mullet, but NOW I think I might be destined for the monk look. Oh, I'd give anything to have a mullet instead! Let's hope that my hair comes back on top and FAST! I need it for the Smith reunion and I don't want to look like a middle-aged, balding man when I see my fellow Smithies. Otherwise, I might have to hear a stupid sun hat or something and that would ruin the outfit I've already decided to buy for Ivy Day.

Radiation therapy went fine. No, my skin did not crackle like I feared and I survived. The first "live" treatment was a little longer than intended because my radiation oncologist wanted another X-ray with all the little doo-dads in place to make sure everything was a-okay. So, like before, I undressed and donned the blue printed patient gowns and laid on the radiation table. They helped my arms out of my gown and covered my breasts with strips of cloth (for the sake of modesty/comfort...they have to radiate between them anyway). The technicians told me to go totally limp so they could scoot me around in all sorts of fashions in order to get me into the perfect position as practiced in the simulations. They fastened the Hannibal mask onto the table, stabilizing my head. They lowered the radiation machine, which looked remarkably like an over-sized dentists' lamp and installed these sheets of glass that rested just underneath the opening of the radiation machine. On these sheets were all sorts of notes about positioning and where the radiation block that shielded my thyroid was supposed to be placed. I noticed, as well as I could from my Hannibal mask, that they were measuring with rulers and lasers and all sorts of other fancy equipment, making very tiny and precise changes to the alignment of the gear and my body, making placement notes with a black marker. They placed a large rubber band around my toes to prevent wiggling and taped my arms down to the table and scurried out of the room. I guess they wanted to hurry because the positioning they used for the treatment is extremely uncomfortable and the room was terribly cold. They took a couple of X-rays with the machine. It whirred and hissed for a few seconds and shut off.
After a few moments, the technicians came back to tell me that the radiation oncologists were pleased with my placement and the plan, so it was time to receive the first treatment. Suddenly, my heart began to pound and a feeling of anxiety began to well up in my chest. The technicians patted my hand and told me that I was doing great and that the treatment is painless and fast. I mumbled a "thnnkyuw" and I heard the familiar humming of the machine as the giant 'dental lamp' rotated above me, stopping a mere 7-8 inches above my chest and neck area. The techs scurried out of the room and closed the door behind them. In the distance I heard a faint clicking sound, which was the machine priming itself, and then the actual radiation followed; making a great hissing noise that sounded something like a subdued tattoo machine on full blast. The noise sustained itself for approximately 15-20 seconds and stopped. I felt nothing, but my ears were ringing just a little and I felt slightly jarred by the noise it made. The techs rushed in again to check on me and to rotate the machine. The great thing rotated underneath the elevated table I was laying on and stopped behind me at a lateral angel. The technicians again rushed out of the room and the machine was turned on. Another 15-20 seconds of the hissing and tattoo-gun-sounds and that was it.
Immediately afterward, the techs unlatched my Hannibal mask and removed the tape from my arms. At this point, my shoulders were screaming and it felt amazing to finally stretch. (I really underestimated how HARD that damn radiation table was going to be!) They helped me back into my gown and told me that I was free to go. They also told me that the next day's appointment would be even faster because the plan was solidified now. No more need for scans and X-rays, so it would literally take less than 5-10 minutes for set up and treatment. When I got back to the changing room, my skin felt and looked fine, except for all of the random black marks and notes the techs drew on my skin. With a good scrubbing and shower, the marks came right off. It is only mildly embarrassing to leave the radiology department with basically roadsigns marked on your neck that scream, "I HAD RADIATION TODAY!" Check out my pictures after the jump:




So far, so good, but the nurses cautioned me because I am getting radiation directly over my esophagus. I will most likely develop a condition called mucositis. The radiation kills off the cilia that lines your throat and esophagus, resulting in extremely painful swallowing, sore throat and reduced saliva. I'll have to swear off eating anything crunchy, sponge-like, or spicy/hot. On the list they recommend foods such as, cream of wheat (yech), soup, smoothies, yogurt, ensure (double yech), and other easy to swallow foods. In other words: PUREED. (triple yech!!)
In addition, the radiation will be grazing my lungs, resulting in a residual cough (that may or may not go away) and reduced lung capacity. Great. Not like the Bleo (the B in ABVD) didn't already take care of that! Uhm..I'd like to get back to my normal life, including my yoga class. You can keep all of those nasty side effects. :(

...How do you want your eggs?

Tomorrow is my second radiation simulation appointment. They're going to take additional scans of my body to calibrate the machine and do a "dry run" using the foaming blocks (used to keep me absolutely still for the treatment). I hear that radiation is SO much easier to deal with than chemotherapy. But whenever I think of what radiation will be like, I keep thinking about the skin irritation that commonly results. I ask myself stupid questions like, "Will I feel my skin burning?" or "Will I hear it sizzle?", as if my skin will make noises like a fried egg under radiation. I know it sounds silly, but I am totally afraid of feeling any sort of pain during the procedure. The technicians keep reassuring me that the live procedure lasts less than 1-2 minutes total. They say that any sensitivity I feel will be more like a sunburn that you didn't notice you were getting while lying out on the beach. I sure hope so! I don't know if I could handle the sound of my skin crackling and sizzling, even though I'm positive that is just my imagination running wild!

Moving Forward (cue dramatic music!)

Apparently, after having cancer, everything is supposed to seem just a little "different". The leaves are a little greener, food tastes better, and every sunset is just a touch more golden. Honestly, everything looks and tastes the same to me. The leaves are green, food is nourishing, and yes, the sun sets. But nothing feels or seems different, other than my level of post-chemo energy. It aggravates me when people say that they had some sort of epiphany as a result of having cancer, like they found Jesus or that they have a "new take on life" or something.
Personally, I have learned NOTHING spiritually or emotionally useful from having cancer. Sure, I've picked up all sorts of fancy doctor language, long acronyms, and intimately understand what it is like to undergo various painful and violating procedures you only hear about on episodes of "House". I've learned that insurance companies can put a price on your life and that even fellow cancer survivors can still be real assholes, no matter how many "epiphanies" they've had. I've also had the illustrious privilege of receiving a $10,000 statement from my treatment center and various bill-grants refused, simply because I had student loan income the year I was diagnosed. I've learned that I don't qualify for insurance (or I have to through the nose for it), simply because of one random, mitotic mutation that precipitated my cancer development and that having only one PET scan, costing 7K each, a year is "enough". (I need one every three months) I've learned that hospital accountants are real assholes with no semblance of human compassion/are robots trained to squeeze every last dime from you and that it is more important for me to pay my hospital bill immediately than to focus on getting healthy. I've learned that money has become the pivot point of our country; things get done if you've got the money...you can see a doctor, you can prevent cancer, you can get your illness treated right away, you can receive competent and compassionate care, you can even buy yourself fake sympathy.

Grad school: Oh so Helpful

I've been contacting my professors, asking them what kind of plan I should formulate in order to finish my classes. They all gave me incomplete scores for last semester's coursework. Let me preface this by reminding our lovely readers that cancer and treatment basically becomes the center of your life when you are diagnosed. It is not something that can easily be balanced with the rest of your life; thus resulting in me dropping everything and moving to Seattle to get treatment once I found out I have a grapefruit sized tumor in my chest. It goes a little something like this: Chemo, recover, recover, recover, recover, recover, hair falling out/vomit, recover, feel semi-normal for approximately three more days, chemo.

Rinse, repeat.


Furthermore, chemo has taken a toll on my memory. Not only do I forget the simplest of things, but I can hardly tell you what it was we were discussing in class over 5 months ago! To pass my classes, they want me to not only finish the basic requirements, but to do additional work to make up for missed in-class discussions. I think this is stupid, pointless busywork and it's just more bullshit that a student with cancer has to put up with. Do they REALLY think that students were actually participating? Half the people in the class didn't even talk or contribute, yet they're probably going to get full discussion points anyway. Wanna know why? Because no one, not even professors, take participation points that seriously. It's just so they're not standing there with nothing to say once class time rolls around. Honestly, a paper for each class missed...?
Also, I'm going to have to reread everything for my classes. Chemo has affected my memory so severely that I'm going to have to relearn a lot of things already covered. I have to take a pre-lims style final in order to finish this class...I'm going to have reread everything anyway. Mind you, rereading everything is no easy task. That's a lot of material! I was also supposed to have a rough draft of my thesis completed, but I've still got some more work to do on that.
In sum, I have no idea how I'm going to finish all of this without dedicating all of my time to it. Where money is going to come from, I don't know because I can't work and go to school at the same time right now. Just not feasible. I'm going to ask for a full semester to finish this stuff, otherwise, I'm going to make myself sick trying to do it all.

Fava beans and a nice chianti...

Yesterday was my radiation appointment. The radiation oncologists were both really nice and very, very thorough. They verbally went through my medical history, where I first noticed the lump, how I reacted to chemo. Luckily, I only have to have radiation for four weeks!! Not the 6-7 weeks they originally had thought I would need. I will be receiving an extremely low dose (3,000 r) compared to other cancer patients. Apparently, dual modality treatment (chemo and radiation combined) is extremely effective against my classic nodular sclerosing HL. The unfortunate part of this whole business, however, is the fact that my cancer was discovered a mere few inches away from my thyroid. For all of you non-doctor types out there reading, your thyroid is a gland that secretes important hormones (specifically triiodothyronine and thyroxine) needed for every day functions. It is located near the adam's apple in your neck. It's responsible for a crap-ton of important stuff such as cellular metabolism, maintaining body temperature, and properly storing and utilizing calcium. The radiation treatment necessary to prevent my cancer from coming back will pretty much decimate my thyroid gland and result in secondary hypothyroidism, making me dependent on daily oral medications that mimic the production of thyroid hormones. Hypothyroidism is responsible for a host of yuckie symptoms such as brittle hair and nails, dry skin, low energy, weight gain (as if the chemo and prednisone didn't already do that!), sensitive to cold, constipation, depression, fatigue, and joint/muscle pain.

Sounds like chemo ALLLLLL over again except for the rest of my life!

There may be a slight chance that my radiation, being so low-dose, will only cause sub-clinical hypothyroidism, but still...another thing I gotta worry about.

Anyway, after we talked about our plan, I was escorted into the simulation room. On the docket was a CAT scan, tattoos, and the creation of positioning mask for radiation. The nurse that was attending on me had a thick Southern accent and called me "darlin" every couple of sentences. She gave me a gown and asked me to undress from the waist up. They explained that they needed to do a CAT scan which would give the radiation oncologists a baseline of my body so they can determine the specific points inside my body where the radiation will be aimed. This needs to be as precise as possible so they can reduce the amount of healthy tissue damage (which puts me at risk for secondary cancers). The CAT scan takes a bunch of pictures in "slices"; kind of like cutting a birthday cake and being able to see all the layers of cake and frosting. They want to be able to see exactly where inside my tumors were so they can determine a good margin of error. Not only will they be radiating exactly where the structures are, but they will be doing a little around it, in case some stray cancer cells decided to wander outside of the premises.
So, I undressed and laid down on the CAT scan table. The nurses explained to me that in order to access the area under my neck, they had to tilt my head back. Tilting your head back that far is HARD, so they made me a special mesh mask that helps keep my head really still and in the perfect position. The mask making kit was a little like a warm, wet tennis racket... They heated up the mesh with hot water. Then the plastic mesh was pushed directly over my face and locked to the board underneath. It make me feel a little like Hannibal Lecter from Silence of the Lambs. Hello, Clarice...


The nurses pressed on the mesh to force it to conform to my facial features and turned on cold fans to help it harden. After the mask was formed, they took some tape and made some marks to help remind them of my positioning. They marked my arms and chest with a sharpie and completed the scan. Afterward, they removed the mask and took a sharp needle and gave me four freckle sized tattoos. These help align my body in the machine the same way each time. The little tattoos on my chest and between my breasts hurt like a bitch! My next appointment is in three weeks allowing me lots of time to start feeling normal again. It's not the actual treatment, but a simulation with the the actual radiation machine. They'll create these nifty foam blocks that will conform to the shape of my body and cover healthy parts of my body. Then they'll do a "dry run", which is essentially a practice session without radiation.

And all I have to do is lie there and go on a mental vacation! :)

Excuse me...EXCUSE ME!

I'm finally starting to rebound and I realized that this is the last time that I'll feel chemo-shitty again. YEAHHH!

I miss my Doc Martens. I CAN'T BELIEVE I GOT RID OF THEM! Those shoes have been with me since high school and now I feel like an idiot for donating them. They were taking in water when it rained and it had some seriously worn down soles...nothing that a cobbler couldn't fix though, right? (lol I laughed at the word, 'cobbler'. Do they even exist anymore?)

I remember when wore them to the airport when I was leaving Massachusetts for winter break and took them off for security screening. Some dumbass guy behind me said with a smirk, "Whose ass are going to kick with THOSE?" I set them on the X-ray machine and whipped around and said, "Yours if you don't leave me alone."

His look was priceless.

On another note...my hair is growing really fast in back and is super thin and wispy in front. I'm starting to worry that my hair will look a little like Macgyver. So, I need help deciding what to do; should I keep the boycut or should I grow it out and face the inevitable Macgyver stage? If I choose the latter, I'm going to have to buy some regular-people hats and not the chemo turbans I've been wearing for the past several months. Or maybe I should embrace it whole-heartedly, like Kristin Stewart's poor decision to go from long flowing locks to choppy, greasy black mullet?

Tomorrow: Last Chemo FOREVERRRR

Tomorrow is my last chemotherapy treatment. I felt like this day would never come and frankly, I am dumbfounded that it only took this long. I was expecting it to be so much longer! I am not really sure how to feel about all of this. It almost feels premature in a way or surreal. How could it be gone so quickly? In November, Ah there it is...the little bastards invading my mediastinum (fancy doctor word for 'chest')and a few months later suddenly, POOF! nothing to be seen on the PET scan.

Ahh the miracles of modern medicine..

David and I were talking in the car one afternoon and he said, "You know, one day chemotherapy is going to seem like a barbaric treatment option for cancer patients". I sure hope so, because it really, REALLY sucks! I wouldn't wish chemo even on my worst enemy. I hate my port; it hurts, it itches, it rubs against my seatbelt when I drive, it hurts to access it, sometimes it doesn't like to work. I hate having anyone even get a glimpse of it, so I'm always aware of it's presence. I have to wear scarves or high necked t-shirts to cover it up. I really hate it and I am on the edge of my seat, wondering when they're going to remove the damned thing from me. I don't like how it shows through the skin on my neck when I turn my head. It makes me look like my jugular is popping out... I know I have to keep it for a while, but I hope that I don't have to keep it TOO long.

I have my radiation appointment on the 3rd of March. This is just to talk to the doctor about their plans and to map out my body for the radiation machine. I get to have a fancy mold of my body made just for ME! I wonder if they'll let me take it home later as some sort of postmodern art piece. Sometimes they give patients a bunch of little dot tattoos that help guide the machine... I wonder if they're going to give one to me? I guess I'll have to learn to love them, right? Talk about tattoo regret.

A (Un)Love Letter to my Cancer

Dear Cancer,

Before all of this, I had everything. I was going places and doing things before you showed up. I had a wonderful college experience, I got married, I had pets and I got into grad school. Just around when you decided to pop your little fucking head, offers started rolling in; going to conferences, working on research teams, teaching courses... Yeah, things were really looking up until I started to feel tired. All the time. But like a bad feeling just can't shake, I was always hounded by fatigue. Even if I slept 14 hours, there was a feeling that I was just unwell. I attributed all of this to my long work hours but then I noticed a lump over my collarbone which really distressed me. I had a cold the week before I was diagnosed and thought perhaps my lymph nodes were swollen. I ignored the signs for five whole weeks until I finally succumbed and went to see a doctor.
They figured out that YOU were the reason I was sick all the time. I've had to put up with all sorts of shit on account of you. I had surgery, biopsies, chemo and now radiation. I've lost my hair and tossed my cookies more times than I would like to recall. You thought you could get away with it, did you?
If I could, I would kick your ass so hard that you'd digress back to your mitotic stage and forget about even messing with me in the first place. If you ever come back I swear I will kill you.

NO LOVE,
Susan

F* you cancer!!!

I HAVE POST CANCER PLANS!

1. Travel (Europe? SMITH?!)
2. Eat organic. I'm not allowed to eat vegan/vegetarian anymore since I'm now anemic after my disease. :(
3. Jessica Simpson hair-you-can-wear/Extensions/Grow out my boy-cut
4. Shopping!! Now that I'm not going to feel like a water-filled zepplin..
5. Make home-made pasta
6. Half-sleeve tattoo
7. Ridiculous earrings and extra-long beaded necklaces
8. Low stress! I will not be over-worked anymore.
9. Vegan shoes and clothes
10. Gardening
11. Scar-reduction treatments. Stupid port...
12. Get a dog and play frisbee
13. Eat Mimo's pizza
14. Practice my cello
15. Find a new TV series that I like
16. Learn to do "smokey eyes"
17. New dansko shoes
18. Finish my M.A.!

I MADE CANCER MY BITCH (If I had confetti, I'd throw it!!)

So, just in case you didn't know, PET scans detect the metabolic activity of cancern cells. Cancer cells metabolize the sugar tracer used in a PET scan much more quickly than normal, health cells. My before PET showed the areas where I had cancer, just being a bunch of gluttonous bastards and now, NOW, NOOOOWWWW, those little fuckers are dead. They didn't metabolize it at all. There was absolutely no suspicious activity.
YEAHHHHH!

So, my oncologists want to make this cycle my last (ONLY ONE MORE CHEMO TREATMENT LEFT) and then talk to the radiologists and see if they feel comfortable with that decision. They might be jerks and want me to finish up some more chemo just to be safe, but in all, everything seems to point to a finishing line. After chemo, 5-6 weeks of daily radiation.

Joy.

Harry Potter is the Ultimate Escapism

Since my last infusion, I've been re-watching the Harry Potter movies, simply because I have nothing better to do. Harry Potter is the ultimate escapism for me. For some it is the Goonies, but for me it's Harry.
It occurred to me that in the wizarding world that Rowling has created, there are all sorts of strange creatures, plants, evil wizards that can kill you, curse you or whatever but they never talk about regular illnesses that real people have. I mean, what would they do if they got a standard disease that human-bodied people get? What would they do? Or do magical people even get real sicknesses in their world? Does being a Muggle pre-dispose you to mortal diseases or something?
Wouldn't it be awesome if you could just, I dunno...cut some tentacular leaves, stew up a nasty looking potion and could cure whatever it is that you had. Even if you couldn't cure what you had, you could at least wave your wand and have all the chores get done automatically, right? (Apparently, in the magical world, being clean is considered strange, so maybe not.) Afterall, you can just say "ACCIO______!!" and whatever you're looking for just comes to you. That would be nice when I can't remember where the hell I put my car keys.

*sigh*
Still waiting on my Hogwarts letter...

I've Been Avoiding Posting.

Last infusion was suck-tastic. Like...really suck-tastic.
Apparently, I have developed a horrible chemotherapy-related association. The smell of those awful alcohol swabs they used to disinfect the ends of my port catheter make me so sick that even thinking about the smell makes me want to vomit. They had to use extremely strong drugs this time in order to curb my queasiness. Let's just say that I awoke 4 or 5 hours later; at home, in bed... Now anything with alcohol in it just makes me want to ralph. *sigh*

Bills are finally beginning to roll in and I'm stressing about being able to pay for everything so, I applied for disability benefits. Apparently, because I am young, I have not worked enough years to collect benefits. (You can thank Mom and Dad for not letting me work in high school!) Now I have to drag my sick ass down to the disability/social security office and meet with them in person and try to cajole them into helping me out financially. Let me tell you that applying for disability services and financial support is no walk in the park. Everything, EVERYTHING must be documented and no mistakes can be made about the specifics of your condition, when you became unable to work and how "sick" you are. They even ask if you if you're going to die eventually from your condition as if they were asking what you ate for lunch. How morbid, right? Also, they're very suspicious of people who were born outside of the United States, even if you're on paper an American citizen. (As many of you know, I was born as an American in Germany)It was like the disability benefits rep didn't believe I was a citizen; giving me the freaking 20 questions... Uhm, hello? Birth certificate. Just look. Anyone who thinks that non-citizen residents can "easily get" these benefits is wrong. It is not easy, even for someone with a legitimate reason to need benefits and the citizenship to qualify.

On top of all of this is the fact that my memory has gone to shit. I forget things really easily, like if you tell me a couple of numbers or tell me to go get something from the store, I can't recall what it is you told me. It drives me nuts! I've basically resorted to writing everything down.

I missed my Co-op!

David and I took a road trip to Idaho yesterday, so here I am in my favorite place in the world; the Co-op! There is something about the enviornment in the little cafe that makes you feel like you've come home to something. There is all sorts of good, happy energy here and the food is fantastic. Everything tastes better when you get it at the Co-op. I had a satsuma that was so sweet, it tasted like a piece of candy. I feel really lucky to be sitting here and eating such delicious food.

The other day, my sister and I were chatting on the phone about finances and life in general. She said, "You'll know when you've hit that point; when all the bills are paid, you can afford to eat and you still have a little left over". I am so ready for that comfortable place, when I can actually LIVE and not worry about having enough to cover basic expenses. There have been many times where I paid the phone bill instead of buying food. I've gotten used to scraping change off the ground, in hopes that if I do it enough, maybe there will be enough for something later. There was a time in October last year, when I was buying tortillas at the dollar store. Yes, it is cheaper to buy them at the regular grocery store, but when you only have a couple of dollars and you need to make it stretch, the dollar store seems like a good idea.
When we came back to Idaho, we were surprised at what we actually had left in our fridge. We couldn't believe that we were subsisting on literally nothing. Now I remember why I took that at-home teaching job. (Part of the deal was that I get a full meal.) In the fridge was literally the following: half a jar of jam, mustard, three dilapidated carrots, a bag of very old and hard tortillas, and a freezer full of lamb chops that I bought sometime at Safeway when they were cheap in bulk.
I remember the constant feeling of desperation when there wasn't enough to eat. I felt jealous and jaded that there were people who could afford to buy enough each week. I couldn't concentrate and there was nothing that I could do to lift us out of poverty, no matter how many odd jobs I took. My teaching salary was so minimal that it didn't even pay half the rent and I was supposed to be doing ONLY that. If they found out that I had two other jobs, I would have lost my funding.
Anyway, those experiences have given me a better understanding what many people are going through. Food insecurity is a real problem and when you don't have enough food, there is no amount of gumption that can pull you up by your bootstraps.

I think as a nation, we have taken much for granted.

A Day of Meditation in Pictures.

"When we take the one seat on our meditation cushion, we become our own monastery. We create the compassionate space that allows for the arising of all things; sorrows, loneliness, shame, desire, regret, frustration, happiness." --Jack Kornfield, borrowed from Kris Carr's Crazy, Sexy Cancer Survivor

Quiet space.



















Simple things.
























Peaceful mind.
























New beginnings.

Nail Salon'ing: Coincidence? I'd Like to Think Not... PLUS! Disgusting Updates

As a reward for being SOOOO good yesterday during chemo infusion #3 (more on that to come below), I decided to take myself to the nail salon. Because of the chemo, my nails were thinning, cracking and peeling. I am not supposed to get my nails at a salon because the chance of getting an infection/cuts are high. So, I compromised. I asked the nail tech to just buff and file my nails to clean them up. I was originally going to just do a clear coat and nail hardener, but a super cute bottle of nail polish caught my eye. I picked up this pinkish nail polish by O.P.I. and I was immediately attracted to it. I looked at the bottom of the bottle and the shade was called "Rosy Future". I thought that this was more than fitting for me!

Yesterday was such a shit-show. I put my lidocaine cream on as I did last time, but apparently I did not use enough because the port access hurt like hell.

Wait..let me start over.

I arrived at SCCA to get an H1N1 vaccine, blood draw and have my port accessed for chemo later that day. The nurse was sort've weird. I've never seen her before and she was just...scattered. She asked me a lot of questions that I had no answer to, such as "what size needle do you normally use?" etc. I was already sorta nervous for my port access so her bird-brained, scattered protocol were stressing me out. She gave me the vaccine, which was fine and then proceeded to have my port accessed. It hurt like hell and it just didn't feel right, even though I had lidocaine cream on it. She pushed several syringes of heparinized saline and then pulled for a blood return. Apparently, my port line was clogged and nothing was coming back through the syringe. She tried several more syringes of heparinized saline through the port, but no matter how much she pulled and pulled, trying to get blood, the more it began to throb and sting. Exasperated, she put me in a recliner and leaned me back, hopefully to get the blood pooling to the area. She tried several more syringes and weird bodily manipulations and still nothing came back and now my port, which is still new, hurt even more! So the nurse had to take blood from my arm, which made for three pricks in one day (That sounded dirty didn't it? LOL). In sum, materials were flowing IN but not out of the port.

I painfully made my way up to the 4th floor and my port was hurting so bad it forced me to tears. Soon after I checked in, I was called back and the nurse noticed that I was crying. I explained to her that my port was hurting and she immediately offered me some pain relief, which I accepted. My nurse practitioner, Lorraine, came in to inspect my port. Lorraine has this interesting way of making your complaints seem trivial and her attempts at compassion come off condescending. She's good at what she does, but I try to avoid talking to her if possible. She essentially told me that my port pain was "not a big deal" and that I didn't need pain relief (literally her own words), but she was planning to have the infusion nurses, who administer the chemotherapy, inspect it since they are experts at port placement. If the port is blocked with a clot or whatever, it is easy to clear with a special medication called TPA. It "eats" away whatever clot or material is stuck in the port. If that didn't clear it out, the radiologists would have to be called to inspect it via CT/X-Ray and a peripheral (hand/arm) Iv would have to started for the day's chemo. UGH. I saw both of my oncos and we discussed my reactions to chemotherapy and how I have been managing my symptoms; everything seemed satisfactory. In fact, my white blood cell counts, neutrophils etc were actually HIGHER after my last infusion. The oncos told me to keep doing whatever I was doing! You mean cookie shakes, fries and light/sporadic TaiChi? Works for me!

I checked in at the infusion desk and was immediately sent to an infusion room. My regular nurse came in and we discussed the problems I'd been having with my port. Nikki explained that the needle used to access the port was off angle and it is catching the port in a way that backs everything up. Any material that is in the tubing should have been cleared with the heparinized saline, but since the port was improperly accessed, nothing was making it through. The medicines were collecting in the port (and not flowing through/in the line)and since there was so much medicine in the port, it began to dissipate into the surrounding tissues and muscle. Heparine causes burning and pain at the injection site and all of the tugging and manipulating of a relatively new port did not help either; thus explaining the excruciating pain. Nurse Nikki gently manipulated the port and gave me a series of breathing techniques which should help mitigate the issues with the angle of the port. With that, everything was flowing properly. I did not need a new port or have it reaccessed! YAY!

Anyway, chemo #3 wasn't nearly as bad as before. I requested that my anti-nausea drugs be administered by IV and my chemo diluted with saline. I also drank a whole liter of water throughout the infusion and ate a box of lunchables. Light frequent nibbling and lots of water has made a WORLD of difference this time around.

Today, I'm feeling pretty blah. A little queasy, shakey, and weak, but I managed to have enough energy to go to the nail salon. Hopefully, tomorrow I will be much improved!

This afternoon, my Mom was watching her fav movie, Pretty Woman. It is, of course, the one movie I cannot stand!! Usually, I just flip the channel or try to con her into watching something else, but somehow, Julia Roberts' hair was mesmerizing. In the movie, she has this long, curly red mop of hair. I was nearly in tears because it reminded me of my hair before cancer. Before I gave my hair away and started chemo, my hair was really really long. I donated a whole 11" of hair to Locks of Love and had enough left over to style. Just to give you an idea of what kind of hair I used to have...(The color is a little mousy because the picture was taken in winter. My hair color changes in summer)


Senior in college. Pre-cancer, pre-grad school and 10 pounds lighter! (stupid steriods...)

Anyway, here is a picture that has made my day. What a sweetie, no? <333 (Black one is Niko, the cream-colored one hiding his face is Mosey)

Mmmm...

I just had the most delicious Subway sandwich ever. I just thought everyone would like to know that. :)



Anyway, I recently got a statement in the mail from my cancer treatment center after one infusion and PET scan. Yeah...Most of this isn't going to be covered by my basic student insurance. When I am done with all of my treatment, my bills are going to be in the millions. If the health care bill doesn't pass, no insurance company will agree to cover me or if they will, I will probably pay for it out of the nose. I don't know how I am going to pay for this later.

SOMETHING needs to change.