Tomorrow marks 1 year. The dreaded phone call, It started the slew of appointments, tests, poking, prodding, chemical cocktails and radiation. 1 year ago and the whole year looking back was the craziest, scariest experience of my life. Tomorrow is a milestone, and i'm sure one of many. Not everyone can say they've beat cancer. I'm proud of what i've accomplished. I received this in the mail yesterday. It proves that no matter if you're 23 or 80, it can be beaten. Cancer is no match for me.
Note: Left was taken 9/2/09. My heart doesnt light up because the tumors decided to use up all the radioactive glucose to show its ugly face. Right was taken 3/1/10. Speaks for itself.
As the days pass, each seems to be packed full of surprises and responsibilities. I almost feel what they call "survivors guilt". I seem to be living more and more days like it never happened. Yes I still have short hair, havent lost the steroid weight, and my energy levels arent back to 100% yet... but ultimately its been nice to not let my mind wander, or wonder. Not everyone went through the process as easily as I did. So many others dealt with so much worse, and my heart goes out to them.
I had my first follow up with the ONC this week, and I love the fact that she doesnt want to use the PET scan as a diagnostic tool. A virus, an infection can set off all kinds of hot spots on those scans that would creat a whirlwind of painful tests, and un-necessary freaking out. A physical exam found no swollen lymph nodes. Now a CT is being scheduled in November to check out the ol' chest/heart area which is where the major tumor resided. (PAST TENSE) This means, NO SCANXIETY until after the wedding!
Cody and I have picked up where things left off in September 09 and are loving every minute of it.
(pictures to come - once I figure out blogspots issues)
Last Friday marked the last radiation treatment, which itself marked the last treatment of this journey through a cancer experience. To celebrate, I thought a haircut was in order. I have been sporting a hat for too long now, and its time I get my Katie back. No more looking in the mirror and not recognizing myself. And thats nothing a little blonde kick and hours in the bathroom with hair product, pins, headbands, galore... cant fix.
Cody and I have planned a few days to get the hell out of dodge next weekend. I small vacation is the ultimate pick me up before getting back to work, and heading back into wedding season. It will be a busy, yet eventful summer.
And I thought I was going to get off scott-free. Seems like I have the tendency to speak too soon about these things.
My sore throat started a couple days ago as just a "frog in your throat" feeling. The feeling that you've swallowed something, but it just doesnt want to go down. Last night, after making burgers for dinner.... my god, I will not be eating ground beef through the remainder of my radiation course. Talk about tough to swallow.
Luckily, there is only 1 week left of radiation treatments. Knowing my usual anticipation of things to come, it will go by slowly, but surely! I'd like to avoid "ensure" or "slimfast" meals 3 - 4 times a day if I can. But I have a feeling there will be many milkshakes, mashed potatoes, and strawberries and cream ensure here and there to help with my apetite. Even though its all loaded with sugar. :)
I'd rather have a sore throat, than go through chemotherapy again.
Found this video on YouTube, as i've been searching endlessly for something similar to my experience.
This man is being treated for colon cancer, so the difference is... I actually lay face up, as they radiate my chest and neck (front and back).
But this is really close to what its really like, the sound, the machine, everything. Enjoi.
I've been reading a lot lately about people whose support system, dissappears. Its sad, because those of us who are going through the worst of the worst, need our family and friends more than ever. I've been blessed with having a really close family. Not once did I go to chemotherapy alone. Not one day afterwards went without at least a phone call. Its so hard to hear about peoples parents avoiding their phone calls. Friends being ignorant. The people closest to you backing away as you fight for your life.. its so wrong. It makes me sad.
So this post is deticated to my support system. I would not have gone through all of this, avoiding complications, avoiding the downward spiral of depression... without YOU. Wish I could throw a party in honor of YOU. Because YOU are a big, big part of the cancer fighting process. and YOU deserve a frickin medal or something.
Sarah & Chris
P.S. Pets ARE a huge part of your support system.
P.S.S. I also found many many great people on Planet Cancer. No better brain to pick than a fellow young adult cancer survivor.
The simulation is part one of the radiation schedule. This post is to document my experience, as it was far from enjoyable.
Mom and I show up at the radiation oncology department at St Josephs about 10min early. A male nurse walks into the waiting room with my chart and calls my name. So naturally I stood up and was prepared to follow him into a room where things would be explained to me. Ha ha, No. He proceeded to pull out a digital camera and take my picture right there in the waiting room (with all glass walls, exposing me to the hosiptals main floor) so the picture was awful, my face is bright red, hat hair, just embarrassing. Its so I can identify myself easily, to make sure they are treating the right person. So I shrug it off and follow him into the womens changing room where he wanted me to change into a gown, take off all jewelry, etc... I end up in a second waiting room where other radiation patients wait their turn for the zappy zap. "Man nurse" meets me there and brings me into the "simulation room" where he proceeds to explain the importance of a pregnancy test. "is there a chance you could be pregnant?" he asks. "well, I guess theres always a chance.". Thinking that might have been obvious if he had read my chart. Next thing I know, hes sending me to put my clothes back on, walk over to a different building and have bloodwork done to verify whether or not i'm pregnant.
As I waited and waited for "Ms Wright?" at the lab... I finally get called back. The lab tech sticks me and starts filling a FEW viles with my blood. "Wow, thats a lot of blood for a pregnancy test" I said. She says "Pregnancy Test???" Wow. Talk about a cluster-fuck of miscommunication between medical professionals. Good thing I said that DURING the blood draw so she was able to get the right colored tube for the job.
Mom and I get back to radiation oncology waiting room and are told it would be about 20minutes for the results to come back. 15min later I get an email on my phone with the pregnancy test results via email. NEGATIVE. 45 MINUTES later a nurse shows up to escort me back to get changed. Must have caught the lunch break. Finally i'm back in the simulation room and they start explaining whats going down.
-Get mold of upper torso to keep you in place
-CT scan to ensure pinpoint accuracy of radiation beams.
-Tattoos to mark angles
-Watch old school 80's style educational video on radiation and cancer
I have to elaborate on the tattoos because its not what most people would think as a tattoo. Its more like sticking a needle painfully deep into my skin, swirling it around, and pouring blue ink into the wound... 3 times. (I am NOT over-exaggerating here, it really is what they did) After, they poured some alcohol on it to avoid infection and sent me on my way. No stopping the bleeding, no band-aids, no cotton ball, no nothing. So as I walk back to the dressing room, theres blood spots under both arms (mid-ribcage) and in between the boobs. Ugh. I desperately tried to stop the bleeding with the hospital gown before putting my clothes back on to avoid blood stains on my clothes.
All I could do throughout the entire simulation was think good thoughts Katie. Dont cry, dont think about the embarrassment of it all. I guess thats all you really can do when your strapped down to a table, no shirt, bloody tattoos, and 10 people hovering over me like some science project.
--Hey, just watch this 80's educational video about radiation, check in with the nurses station about skin care recommendations, and see you next week!--
Dont I get a sucker?
Or how about "I had cancer, and all I got was this T-Shirt"?
BUT all is well when mom treats me to some much needed BEER, and steamed crab legs at Joe's.
Mom knows best. :)
So i've slacked a bit on updating my blog, but its in good reason I guarantee you! You see, I would have gotten chemo this past Tuesday... but no. I have finally gotten a week with no poking, prodding, chemicals, or feeling bad for myself. So I took advantage and have spent my time doing shit. Let me tell you, it is AWESOME. In a week i've managed to find my wedding venue, set a date, workout everyday, work on sarahs baby shower, do laundry, clean house, walk dog, hang with Katy, celebrate remission, THINK ABOUT THE FUTURE. These are all things I was unable to do, or had an extremely difficult time doing for the past 6 months.
Granted, its not all over. I do start the radiation part of the grand scheme of things in a few short weeks. I will be taking risks, dealing with fatigue,a "sunburn", some heartburn and a sore throat....but its still not chemo. I can still try and get on with my life.
The hard part is over, and i'm taking advantage.
"Its often the bend in the road that makes life worth the drive"
After the tongue swelling went down (Happy Valentines Day!) I officially declared myself in recovery. Thats right, not AFTER radiation but AFTER chemo. Thats when my body can start to repair itself from the 12 chemical cocktails.
Funny how the body reacts to the way you think. After treatment 11 and before treatment 12, I started walking and stretching daily. Started looking at wedding stuff again. Started the recovery process before I even had my last treatment, and let me tell you.... it has done wonders. Specifically:
Hair starting to look not so GOD AWFUL. (but thankful I didnt lose it all)
Eyebrows coming back.
Skin not so dry and rough and "ek"
Steroid weight going down (slowly but surely)
More quality time with Cody
Better things to do than Laundry
Dont mind missing my favorite shows for some human interaction.
Football is over - means more time AWAY from the TV.
Only a matter of time before going back to work.
I still wont hug you though... I think I will forever be a germaphobe.
Unfortunately - My nails have seen better days. Our month of Super Mario Bros Wii has taken its toll on my thumb nails, and now the right thumb nail seems to want to part ways. Gross.
Well, off to get my lungs checked. Lets hope the B didnt cause any permanent damage.
The feelings are so overwhelming, as I repeatedly told friends and family that I would never wish this treatment on anyone... not even my worse enemy. The feeling of accomplishment is very overwhelming and i'm sure it will be for a while.
I still am VERY determined to hit the ground running... even if the running part requires a few weeks of walking first.
Yesterday, I completed my last treatment sans Bleomycin. Turns out the tightness in my chest I had been mentioning for the last month finally struck SOMEBODY as a problem. I now await a pulmonary funcion test to make sure I dont have bleomycin toxicity... which if proven true - I get back on my worst enemy.... Steriods. The chest xray didnt show any signs of that, but we must cover all bases.
I cant wait for the celebration.
Its FEB 20 everyone! At Dirks off Dry Creek and University at 730 if anyone who reads this wants to come!
There is nothing that sends my nerves into panic mode more than hearing someone is sick. Definitely sucks having to explain why I cant hug you. Most people dont listen, and hug anyway. I feel its rude to shun someone when they're going in for the hug. Thats the risk I take. Either make them feel like a moron for trying, ask for a high five instead, or give them a shitty (mini) hug and risk catching what they didnt wash off their hands four hours ago.
I've had to lysol doorknobs, remote controls, the tops of soap dispensers... you name it, i've disinfected it every few days for the last 6 months. That being said, I cant expect everyone else to do the same. The paranoia that comes with having no immune system definitely sets in when in public, or anywhere but home.... and you all wonder why I stay hidden under my rock? The germs might as well be neon orange, thats how well I can spot an unclean surface. Public bathrooms are the worst, as i'm sure all the ladies have experience with "hovering" or the "kick flush".
At any rate, I have quite a viral bullet to dodge. Its nobodys fault, but it just plain sucks to even have to worry about it.
Thought i've been slacking on pics. So here is Roxy alien eyes, and Cody Christmas beard.
The anticipation to end chemotherapy has me in a whirlwind. A constant loopty-loop of emotion. I've never been more anxious to get something overwith. I had been in lying awake in bed one morning since 730am convincing myself to refuse any further chemotherapy. The multitude of negative effects it has on me both physically and emotionally, became so overwhelming... I refused to put my body through it any longer.
"Just 2 more Katie" is what everyone told me while deciding whether or not to move forward with the decision. 2 more, is too many. Maybe its just the fact that it took especially long this time around for me to feel like myself again. Over a week! I didnt have the energy to do anything but lie on the couch and windle in self pity. Which i'm sure you all can guess, is causing me to be an emotional train wreck. I called my Onc to hear about what would happen if I were to stop the Chemo and jump into Radiation. Why is it that someone with Stage IV Hodgkins gets the EXACT SAME treatment plan as someone with Stage II? 6 Rounds Chemotherapy, 17 Rounds Radiation. This fact bothers me. Makes me feel like i'm being put through 4 unecessary poison cocktails. She didnt call me back until 8am the next morning. By that time, I had been convinced that i'm strong enough to deal.
I'll still be asking her about it when I go in for treatment 11 of 12 this Tuesday. Who knows, maybe i'll get lucky and I wont have to do the last one. Unlikely... considering it will just be one more. 2.5 weeks until my last chemo. I have to keep reminding myself that it will be worth finishing it all. Make sure I never have to do it again. Be in that 90 percentile of patients that were CURED. (not just in remission, CURED)
Nothing better than buy 2 get one free shopping at the new boardshop by southglenn. New stuff and a giant glass of Dead Guy on tap made me feel much better. Thanks Dad!
I recently found out about Michael C Hall being diagnosed with Hodgkins Lymphoma.
If you havent seen it, you need to check out DEXTER. Its a showtime series about a serial killer played by Michael C Hall. Kickass show. Cody and I swear by it. It turns out he has been battling the hodge for a while now and has been keeping it a secret from the press. (as anybody would)
Anyways, another unfortunate but cool coinsidence.
On that note, here is a list of celebs who've battled Lymphoma - or - NHL.
Paul Azinger - Professional Golfer
John Cullen - Professional Hockey Player
Andres Galarraga - Plays Baseball for the Atlanta Braves
Dick Gregory - Civil Rights activist and Comedian
David A Huffman - The founding faculty member of the computer science dept. at the University of California - Santa Cruz
LeShon Johnson - Former NY Giants player
King Hussein of Jordan
Gene Wilder - Comedian
Mr T (Laurence Tureaud) - TV Actor
Joey Ramone - Musician (Punk Rocker)
Jackie Kennedy Onassis - Former First Lady
Roger Maris - Baseball Great
Mickey Mantle Jr.
Seems almost unreal that the hard part is about over. Feeling sick for a week, than feeling like myself for a week. Off and on. For 6 months can get strangely familiar and routine. Luckily, I have been able to request my favorite nurse for the big day, and on that last day they sing "hit the road jack, and dont you come back" -- I sure as hell will be thrilled to never see that room again. (all the old people stare at me, and I associate that room with my disease) (now that I no longer have the disease....)
Anyways, just had the lovely poison cocktail yesterday. Seemed like it took forever this time around. About 4 hours to be specific. (probably because I didnt have my favorite nurse, the other ones call me Katherine. eh.) Didnt feel toooo bad when I got home, took a good nap woke up to eat, than went back to bed. I have to keep my distance from Cody to avoid picking up the virus hes gotten. Hopefully he fights it off soon... gets lonely, not being able to hug him. Paranoia sets in quickly after I even sit next to him on the couch. I've been lysol-ing EVERYTHING. Luckily my immune systems starts to come back by Friday. So I'll hope for Friday at the latest.
Next it radiation. I got the go ahead from Dr. Rad to start 4 weeks after my last chemo.
Specifically he will radiate acrost my shoulders for 17 days, and down my sernum for about 11 days. Very low dose - no I will not be radioactive or glow in the dark.
I most look forward to my poor whithering eyebrows filling in... and my god awful boy short hair coming back to girls length. and VACATION. This all starts coming to me in about 1.5 months.
Thank you all for your continued support! We'll have a small get together to celebrate my being done with chemo mid-late FEB. So keep your weekends flexible!
One of my favorite parts of this cancer journey. The guitar.
Not only have Bobby and I grown so close over the past 5 months, but he continues to amaze me with his random acts of kindness.
When I was first diagnosed, he decided to pull one of his favorite guitars (12string) out and use it to help Cody and I pay for all the medical bills and setbacks we've been going through. A great story so far:
The guitar was sent to LA to see Rise Against, and get their autographs... A great friend of Bobby's lives in the area and was more than happy to help get the guitar to where it needed to go. Thanks Sarah! Dad and Bobby decided to drive out there to pick it up and avoid the costly (and risky) trip by air. They also got a chance to visit cousin Vanessa and her adorable family.. Uncle Bob and Aunt Rita, and ALL this family that we havent seen in almost a decade! So that must have been cool.
After the guitar got home safely... Bobby and I started to brainstorm. Who else can we get to sign the guitar? We just couldnt stop at Rise Against. I suggested, The Flobots! One of my new favorite bands that made it big from a local gig "hometown for the holidays" here in CO! Turns out Bobby has a friend at work that knows them! Next thing I know, i'm shaking hands and watching them all sign the guitar. I was starstruck, they are all so cool and laid back.
Next thing I know, Bobby has tickets to see Devotchka, another local band here in CO. They were actually on the Little Miss Sunshine soundtrack. Its like... flamenco, mariachi, gypsy and eastern european folk mash up. Super fun and unique! Unfortunately I couldnt be there... had treatment the day before the show. Bobby did get their signatures and even brough me a vinyl copy of their album (A Mad & Faithful Feeling) signed as well!
Think I might frame it.
So far, this cancer journey has been un-describable. More good days than bad days. Has brought me closer to my Dad, and my Brother. My family as a whole have done an outstanding job making this all soo much easier. With Cody picking up the slack financially, Bobby has gratiously stepped in to keep me company on those rough days.
Bobby, I owe you so much. Words cant explain how thankful I am.
Got some pics of the guitar (sans Devotchka). Still need a couple more Flobots, but at any rate... ENJOI!