You know that radiant, effervescent feeling you get on a sunny stroll through the farmer's market? Your face is warm and the air smells earthy like days of long ago. Or the feeling of sheer awe when you first glimpse the colors of a brilliant sunset and your breath catches at the impossible beauty. Or the moment of accomplishment at the end of a daunting task which was certain to fail but didn't and you're euphoric with jubilation. The past month of my life can be described as far exceeding the combination of all these.
It began with my eyes blinking in disbelief as a smile parted my lips and spread across my face… and over all the land. This of course was my reaction to the Mayo doctor's explanation of the surgery he can perform that will give me, in his words, "a long life." My head detached like a child letting go of a balloon and it floated into the sapphire sky; smile permanantly affixed. Amazement mixed with elation and I time-lapse bloomed into a new person at that very second. My future was returned to me. I will live.
After my balloon head euphorically floated throughout the galaxy for 24 hours, the attached string was nabbed and brought gently, lovingly back to the best place on Earth, Brown International Elementary School. It was revealed to the Brown community I've been working on this little cancer thing for a bit now and without blinking an eye: ACTION!
A party.... for me???? Surely you jest.
Jest they do not and PAR-TAY we did! Drahota Lives grew overnight from a miniature seedling to a colossal beanstalk. Nicole and Steph, you are magical. You two are like the (good) witches in Practical Magic. I'm totally on to you! The things you're making happen are supernatural and brilliant. Thank you for stretching your light, love, energy tentacles out into the world and wrapping them around me.
Lead by the talented and ever so cool DeWayne Even, Edgewater Live rocked the party. A silent auction with weekend getaways to Breckenridge, Broncos tickets, Nuggets tickets, art by the ridiculously talented Barth Quenzer, plus tons more captivated even the young ones who guarded their merch in an effort not to be outbid. Good work Kalie and Kenzie for snatching up my painting! The massive food spread kept everyone nourished and the volunteer bartenders got 'em saucy. The evening was a HUGE hit in so so many ways. Money was raised, laughs were shared, smiles radiated, hugs were given out by the droves, we danced and sang. This is what life's about, sharing a miraculous evening with phenomenal, illustrious humans.
As I said that night, I was not going to cry. I should have been a blubbering idiot at the sight of everyone who came out to help me. I simply couldn't cry; I was happy. I felt hopeful for the first time in a LONG time. The evening was magical. The life-extending news from Mayo and my adventure since is magical. Besides, I have cried far too many tears about this ordeal. I've been in the black trenches of agony/grief/suffering and I will not return. I recall one particularly heavy night I couldn't stop the tears... just days after my second chemo treatment I was trying to hid out when mom came to check on me. My attempt to wipe my eyes so she didn't see was futile. I had to fess up, "I'm just feeling sorry for myself." Talk about a dramatic shift in perspective. My mind is working overtime to contend with the torrent of emotions and information it's been slammed with over the past year. And now the pendulum has swung the opposite way and I'm inundated with joyous emotions. Sure there are days when I awake in the fog of reality and sadness creeps in. Those are the days I think back to my party, hug my friends, laugh with my students and it's instantly better.
I choked up when I had a moment alone with Shelley and told her, "You realize we're friends forever, right." Shell played an integral part in organizing the party... and in being right by my side through this whole journey.
And the tears came when this happened: two years ago I had a student we'll call "I." "I" was, for lack of a better word, challenging. I'm laughing just thinking about it! I love good challenge and I love "I" to infinity and beyond. His aunt, whom I got to know very well during "I's" tenure in my class tells me, "'I' has been working very hard and saving his money. He has something he wants to give you." He handed me a brand new one hundred dollar bill.
The past weekend was dedicated to "Helping Lindsey Lick It." Basha's brainchild started Friday evening at the local ice cream shop, Little Man Ice Cream. They sold ice cream and kids came out to carol in their pj's in my honor. I desperately wanted to join but my body decided to remind me what all this is about and I was quite ill Thursday evening. I missed work on Friday and the Christmas party I was supposed to attend as arm candy (sorry, Bets).
They say that breakfast is the most important meal of the day and Saturday proved this to be true with the weight of the moon. Not only did Niya, without having met me, donate the space in her rad establishment, Local 46, she told me she stayed up all night reading my blog. (I'm calling for an end to this blog causing a loss of sleep -- that goes for you too, Jenny!). Niya, thank you! I'm so lucky to have a new friend. Trent dressed as Santa and Artivore showed up to take pictures with the kids. A huge layout of breakfast foods filled our bellies and the kids sang songs. There was another silent auction. I put Lola Drahota down for the opening bid of $5 on a 2014 "Cat Lovers Against the Bomb" calendar (Cat Lovers Against the Bomb- what? hilarious). She won! I'm still laughing at Nicole announcing the winner by meowing into the microphone.
A few students spoke. Lucy read the poem she wrote for me. (I hope you don't mind I'm sharing, Lucy, this is too angelic to keep to myself.)
Just try and keep a dry eye, I certainly couldn't:
Feeling scared and unprepared are the feelings we all share.
And whatever you do I'll always be there for you.
You mean a lot to me.
And you make me feel like I am who ever I want to be.
I love dogs and you're a crazy cat lover, but that doesn't matter.
Miss Drahota you are a determined, hekava good teacher on a mission to amaze everybody.
You are awesome, strong-hearted, and beautiful.
I love you Miss Drahota you are my favorite teacher ever.
I have the best job in the universe.
Saturday afternoon in the Highlands, while doing a little shopping and grabbing a chai with Vivek, I walked out of a store and exclaimed, "That's me!" I was staring at the "Help LINDSEY Lick It" poster hanging in the storefront. As we strolled down the street, we discovered this poster adorning many of the boutiques' windows. I constantly struggle with the words to express my deep and ever-growing gratitude, I will never find them to express how it feels to have your name on posters all over north Denver. Stunning, unbelievable, humbling, wild, stirring. That's a start.
Basha, you better be resting in bed! I demand you sleep. You have far exceeded the call of philanthropic work with all the events of last weekend! Thank you for taking on my cause, you extraordinary, enchanted woman!
The weekend ended at Jolene's house where the masses convened to have their jewelry cleaned... and I'm sure the wine lure a few too. Monica and Jolene, tirelessly returned the sparkle to the diamonds that adorn the women of Brown so they can shine even brighter!
I'm not a natural receiver, so taking in all this attention, concern, and money (especially the money) is a new development for me and I'm really trying. I work every moment on processing the monumental outpouring of love I've received over the past several months. I'll be processing and applying it for years to come. I will ride this love tsunami right over cancer's stupid head and beyond.
I'm loving my life full of yoga, acupuncture, painting, writing, reading, juicing, friends, new friends, family, school, love and happiness.
I'm missing names and I'm sorry. I don't know the extent of who has done what. Please know that your dazzling display of kindness will not go unnoticed. I will pay every cent and good deed forward. I've got a few ideas about how to do this. I might have the doctors clone me so I can make it all happen. They can do that at Mayo, right?
Olive Branch
After riding high on the rainbows and moonbeams of what has been the past month and probably the best of my life, I'm on the verge of full-on Godzilla mode (again).
It would seem as though I have developed a vendetta against medical professionals but this is not the case. Doctors who a) speak to the wrong person during my cancer treatment consultation (see Bananapants) and/or b) decline to write me a referral quickly from my favor. I've favorably mentioned a certain Kaiser surgeon several times in this lil blog o' mine. I can no longer do so.
It all started Tuesday morning when I put in a little call to Kaiser. I assumed it would be quick and relatively painless.... I should have known better (dang my internal optimism). I was inquiring into the status of my referral to Mayo for my surgery, which is slated for January 8th. Everyone I've spoken with is certain a referral will be denied but sheer refusal to write said referral??? That was completely unexpected. The aforementioned surgeon, without giving me a heads up, noted in my file that no referral would take place because he thinks they can perform the surgery I need at Kaiser. The answer is no, you can't. Mayo has been doing this for years and pioneered the treatment for my type of cancer. I need a neuroendrocrine expert. This has been my mantra for months and I'm not going to stop chanting it now. The hospitals with neuroendrocrine expertise are Mayo and John Hopkins according to my research. Mayo wins because it's closer than the east coast. Kaiser and UC Hospital ruled out live donor liver transplant (down the road), Mayo put it back on the table. Mayo will ablate the liver tumors, Kaiser chemoed them before and without concern for the primary tumor in the pancreas. Everything they say at Mayo makes sense. It is clear, concise and precise. It's what I've craved all along.
The Kaiser surgeon talked me into an invasive surgery, the Whipple, that would have completely altered my life. Both UC Hospital and Mayo agree that is not the best treatment. Both UC Hospital and Mayo agree the primary, pancreatic tumor is in the body of the pancreas and can be saved in part. The Kaiser surgeon repeatedly explained it's in the head of the pancreas and must be fully removed.
A few tears, massive stress, and one zillion phone calls later.... Mayo is sending the request for the surgery referral. Victory! A measly victory but a victory nonetheless. I'll take them any way they come! Plus, I've been winning a lot lately so this little bump in the road isn't going to impede my army as we continue the march into battle.
After Mayo sends the request, Kaiser can approve or deny it -- something I thought was already in the works. At least the process is now started. If we're denied we can appeal. Since Kaiser is an HMO, a fantastic idea for health care until you get a rare cancer, they will probably not cover my surgery. We called the Mayo business office and asked for an estimate on my surgery and subsequent hospital stay. They quoted numbers that don't exist in Teachersalaryland where I live. We are to walk in the door with an amount that is well above what I make in an entire year or I will be turned away. Okay, laugh it off. Whatever happens will happen. Plus, my army is on fire right now and they are rocking the fundraising house!
(Quick side note: Every ounce of my being rejects any idea of anyone giving me any money. This is probably the hardest part of having cancer, honestly. I'm learning that receiving the gifts people are willing to sacrifice from their own hard work is a lesson in deep humility and gratitude. My fruitless search for the words to thank everyone continues in amplitude. They will come someday, somehow, someway.)
So, Godzilla transformation adverted (again). I don't hate doctors or the surgeon referenced several times in this post (see other posts for info about him, Mayo, and all things Lindsey/cancer related). I'm simply trying to get cancer out of my body. I'm not on the warpath against surgeons, Kaiser, or the medical system. Although, it would be a lie if I said I hadn't thought about it a time or two or twenty. My motives are to figure out how to have cancer. How do I cope with this entity in my body which causes me daily discomfort and pain? I've learned there is no clear process or list of procedures. All I can do is listen to my body/heart/soul/mind. They say Mayo is the best place for me to receive the treatment and surgery I need. I will listen as I have done before.
I'm just a girl who wants to get better.
It would seem as though I have developed a vendetta against medical professionals but this is not the case. Doctors who a) speak to the wrong person during my cancer treatment consultation (see Bananapants) and/or b) decline to write me a referral quickly from my favor. I've favorably mentioned a certain Kaiser surgeon several times in this lil blog o' mine. I can no longer do so.
It all started Tuesday morning when I put in a little call to Kaiser. I assumed it would be quick and relatively painless.... I should have known better (dang my internal optimism). I was inquiring into the status of my referral to Mayo for my surgery, which is slated for January 8th. Everyone I've spoken with is certain a referral will be denied but sheer refusal to write said referral??? That was completely unexpected. The aforementioned surgeon, without giving me a heads up, noted in my file that no referral would take place because he thinks they can perform the surgery I need at Kaiser. The answer is no, you can't. Mayo has been doing this for years and pioneered the treatment for my type of cancer. I need a neuroendrocrine expert. This has been my mantra for months and I'm not going to stop chanting it now. The hospitals with neuroendrocrine expertise are Mayo and John Hopkins according to my research. Mayo wins because it's closer than the east coast. Kaiser and UC Hospital ruled out live donor liver transplant (down the road), Mayo put it back on the table. Mayo will ablate the liver tumors, Kaiser chemoed them before and without concern for the primary tumor in the pancreas. Everything they say at Mayo makes sense. It is clear, concise and precise. It's what I've craved all along.
The Kaiser surgeon talked me into an invasive surgery, the Whipple, that would have completely altered my life. Both UC Hospital and Mayo agree that is not the best treatment. Both UC Hospital and Mayo agree the primary, pancreatic tumor is in the body of the pancreas and can be saved in part. The Kaiser surgeon repeatedly explained it's in the head of the pancreas and must be fully removed.
A few tears, massive stress, and one zillion phone calls later.... Mayo is sending the request for the surgery referral. Victory! A measly victory but a victory nonetheless. I'll take them any way they come! Plus, I've been winning a lot lately so this little bump in the road isn't going to impede my army as we continue the march into battle.
After Mayo sends the request, Kaiser can approve or deny it -- something I thought was already in the works. At least the process is now started. If we're denied we can appeal. Since Kaiser is an HMO, a fantastic idea for health care until you get a rare cancer, they will probably not cover my surgery. We called the Mayo business office and asked for an estimate on my surgery and subsequent hospital stay. They quoted numbers that don't exist in Teachersalaryland where I live. We are to walk in the door with an amount that is well above what I make in an entire year or I will be turned away. Okay, laugh it off. Whatever happens will happen. Plus, my army is on fire right now and they are rocking the fundraising house!
(Quick side note: Every ounce of my being rejects any idea of anyone giving me any money. This is probably the hardest part of having cancer, honestly. I'm learning that receiving the gifts people are willing to sacrifice from their own hard work is a lesson in deep humility and gratitude. My fruitless search for the words to thank everyone continues in amplitude. They will come someday, somehow, someway.)
So, Godzilla transformation adverted (again). I don't hate doctors or the surgeon referenced several times in this post (see other posts for info about him, Mayo, and all things Lindsey/cancer related). I'm simply trying to get cancer out of my body. I'm not on the warpath against surgeons, Kaiser, or the medical system. Although, it would be a lie if I said I hadn't thought about it a time or two or twenty. My motives are to figure out how to have cancer. How do I cope with this entity in my body which causes me daily discomfort and pain? I've learned there is no clear process or list of procedures. All I can do is listen to my body/heart/soul/mind. They say Mayo is the best place for me to receive the treatment and surgery I need. I will listen as I have done before.
I'm just a girl who wants to get better.
Humble Pie
I'm a fairly private person. My introvert side whipped into a frenzy when I opted to come out of the cancer closet last week. Word is spreading in the community and to our families at school. It was no easy task, but coming out has made me privy to the grandest event I've ever witnessed. Everyone is exuding the most brilliant energy. There is a golden aura encapsulating the world emulating from people’s love and light. A whirlwind of human greatness swirls around me and I’ve got the best seat in the house.
Cancer, you may have bested me before but now you're down in the count. Prepare to be defeated. You gained the upper hand when it was just me and my small band of Merrymen. We’re not easily conquered. AND now we have an army. The people by my side has multiplied ten fold. Checkmate.
A Turkish proverb states, "Tell me who your friend is and I will tell you who you are." In this essence, I am Jenn's brilliance, Sarah's exuberance, Tiff's animation, Lyndsey’s generosity, Betsy's empathy, Shelley's vivacity, Dad's strength, Susan’s tenacity, Aunt Deb’s consideration and the Brown Moms' fervor. PLUS the millions of traits bestowed upon me by everyone I didn’t name... and so desperately want to name. I’ll start a new blog and call it: I Want To Thank Everyone Personally But Can’t So I’m Writing Your Name On This Blog Which is Not Even Close to Being Good Enough But I Don’t Know How Else to Thank You and I’m Getting Buried Under a Mountain of Indebtedness. That has a nice ring to it.
The outpouring of love from the Brown community has been purely epic/monumental/heroic. The masses are rallied to my side and the flood gates opened. Students are starting to hear about me from their parents. With a gentle tone and loving smile I ask the kids who have “that look” if there is anything they want to talk to me about. Their precious and perfect answer, alongside an expression of concern and compassion, is a variation of, “I’m sorry to hear you have cancer.” Questions about how I’m feeling follow. I assure them I'm doing GREAT. “I’ve found some really good doctors who are going to help me.” I receive lots of hugs. Today, I was excitedly handed an envelope. Upon opening it, I found a handmade card with a picture of a kitty that reads, "I hope this will help".... and six dollars.
Jenn Stuart, marketing revolutionary and graphic designer extraordinaire, has secured my place in history with the dawn of Drahota Lives and www.drahotalives.com. Anyone who doesn't know what to do with a few extra bucks can get rid of them here. Rest assured, this body you're helping me fix will be amply taken care of. I'm very good about my diet, with the occasional exception of a mini Snickers self-propelling itself into my mouth. I can’t control that. I always wear my seat belt. I recycle. I can't wait to get back to regular workouts and yoga.
Aside from school/work, I’m officially out in social media. I act like Facebook is ridiculous, and it is, but I gotta say it's shown me a lot of love recently. Thank you for taking the time to reach out to me. Your words are heard. Friends and friends of friends shared the link to drahotalives.com and urged facebookers around the globe to donate. The power of social media is quite mind blowing.
Whilst enjoying my favorite app in the universe, Spotify, "Who's Thinking About You Now" began crooning in my eardrums. I froze. Everyone. The realization I had in that moment is: Everyone is thinking about me. Not just thinking but donating and organizing and being brilliant and caring and FAR too generous. I will simply continue to sink into a debt of gratitude towards half of the planet for everything that's happening. I don't deserve any of this but I'm reveling in the miracle of it.
Extra Mayo, Please!
Give me all the mayo in a five hundred mile radius!!! I don't even eat dairy! Is mayo actually dairy or just synthetic? Who cares! What am I rambling on about when I have the BEST NEWS EVER.
Surgery isn't scheduled yet. First, I must clear up a few pesky details like work stuffs and how to pay for any of this. Then, Rochester, Minnesota here I come... again. New favorite place, right Tiff?
Dad, I couldn't have done this without your quiet company as you tirelessly criss-crossed the Midwest to haul me back and forth to Minnesota, often in snow and the dead of night. Sherp, #PIC. Mom, we got our plan. Deb and Kendall, watching Lola is no easy task but you have prevailed remarkably. You, readers of this little blog o' mine, we did it. It was your prayers, love, light, cards, thoughts, messages, lunches, late nights that held me upright when I was crumbling Now, we just sit back and let the experts at Mayo take over.
My beautiful people here in Denver are planning a fundraiser in my honor. Wild, yeah? A younger me would have silently backed away with raised eyebrows thinking they are coo-coo for Coco Puffs if someone had said there'd be fundraiser held for me at 32 years of age. Stay tuned for more details. It's going to be a big, fat party and you're all invited!!!
Let the good times roll!!!!!!!!!!!!!
The Mayo Clinic can fix me!!!! Ask and you shall receive! (see previous post) I didn't get a dashing, young doctor but what I did get is one trillion times better: life. At my appointment terms like "long life" and "decades" were being thrown around. I basked in their glory.
Dr. David Nagorney, the surgeon we met with and my new hero, can operate to remove the vast majority of my disease. Happy dance, happy dance, happy dance! Shout from the rafters, sing songs of joy, dance in the streets!!!! On the chopping block is the primary tumor, located in the pancreas, part of my liver, gallbladder and spleen. Peace out! Left behind will be the pancreatic head or about 40% of the organ. This is enough pancreas for me to live normally, I will not need insulin or enzymes. More dancing! The pancreatic body and atrophic tail will be resected. The left side of my liver or the worst looking part, will also meet its maker. Then, any left over liver tumors will be ablated. Burn baby, burn! Since the cancer has micrometastasis in the blood, there is the strong chance of returning incidents. Following surgery, I will be monitored over the years for tumors that may crop up. These will be put on watch if they aren't causing any problems or ablated if they are.
Surgery isn't scheduled yet. First, I must clear up a few pesky details like work stuffs and how to pay for any of this. Then, Rochester, Minnesota here I come... again. New favorite place, right Tiff?
Finally, a plan! Better yet, a plan that makes sense! I didn't know it but this is what I've been looking for over the past 8 months. Even better is a plan involving an abundance of living time afterwards! Saying I'm happy would be an immense understatement. But still true. It's now Wednesday and this news was delivered Monday, I'm still floating on cloud nine. Life is good again. Stress released. Smile returned and multiplied seventy jillion times.
Dad, I couldn't have done this without your quiet company as you tirelessly criss-crossed the Midwest to haul me back and forth to Minnesota, often in snow and the dead of night. Sherp, #PIC. Mom, we got our plan. Deb and Kendall, watching Lola is no easy task but you have prevailed remarkably. You, readers of this little blog o' mine, we did it. It was your prayers, love, light, cards, thoughts, messages, lunches, late nights that held me upright when I was crumbling Now, we just sit back and let the experts at Mayo take over.
My beautiful people here in Denver are planning a fundraiser in my honor. Wild, yeah? A younger me would have silently backed away with raised eyebrows thinking they are coo-coo for Coco Puffs if someone had said there'd be fundraiser held for me at 32 years of age. Stay tuned for more details. It's going to be a big, fat party and you're all invited!!!
Let the good times roll!!!!!!!!!!!!!
Corn Maze
I'm going to tell you what I want. I don't feel as though I'm asking too much. And I certainly don't see why I'm NOT getting what I want.
Here goes.....
An exceedingly experienced and handsome doctor strides purposefully into my assigned hospital room. He shakes my hand, knows I'm the patient, and is quite taken with my youth and vibrance. He's poured over my medical records for hours. He is desperately sorry this is happening to me and he has a plan. He lays out said plan and I'm whisked away to be fixed accordingly.
Warning: prepare for full-on ranting.
The week prior to my trip to Mayo was spent gathering the medical records they requested. Did they ask for a copy of one thing I could easily obtain? Nope. The list was long. Could any of it be found in the same place by contacting one person? Nope. Day after day I made phone call after phone call to place after place. The report and slides from my biopsy, all of my scans and the accompanying reports, notes from each chemo treatment, my full medical record and surgical report and notes from my physicians. Were the slides they'd given me the correct ones? Nope. The day I was getting on a plane for Mayo, I copied all of the records I collected. I'm obsessed with knowing all there is about what's happening to me. While doing this, I discovered the error. One meltdown and three hundred ninety-two phone calls later, my slides were found at the University of Colorado. So I PT Cruised over there to pick them up. Alright, I was all set! The stress was worth it because I was finally going to Mayo! Hooray!
After flying into Minneapolis Tuesday night and driving to Rochester in a snow storm, we awoke early Wednesday morning so I could have blood work done and a CT scan. The rest of the day was spent in Rochester. Dad found a great lunch spot serving gluten free selections (and wine!). The best part was girl time with my sis! What would I do without you, Fry? You are my Sherpa, my rock, my twin, my BFF and partner in crime.
Remember the aforementioned wants? I was ready. Thursday was the big day, time to kick ass and take names! What actually transpired was a brief, highly unfulfilling meeting with an oncologist and then I spent the weekend in Nebraska. All they told me I needed to meet with a surgeon after having an MRI. I'd nearly thrown up in the waiting room before my appointment. After checking in and finding a seat on one of the couches, I became abruptly, terribly nauseous. I wasn't sick. I was overwhelmed, fervent, anxious, exhausted, insane, petrified. My Sherp hassled the nurses for some H2O and I started chugging water. It was all for not, though, because nothing happened. There are three ways to treat cancer: surgery, chemotherapy, radiation. The liver is not typically radiated, leaving surgery and chemo as my options.
Exiting my appointment with zero answers, Mom and Tiff headed to Minneapolis to catch flights back to Denver. Dad and I sat waited out the hours before my MRI time which was 6:30 pm and when I finished around 8:00 pm, we started the 6 hour drive back to Nebraska. The other options would have been staying in Rochester over the weekend or flying to Denver and then back to MN. It was a lose/lose situation. Rochester is not exactly a hopping place. Dad drove through the night and we finally sank into bed around 2:30 am.
What confuses me, among every single thing in the health care system, is this: why didn't the surgeon just come to my appointment? If they knew I needed a surgical consolation, why wasn't he or she there to consult? Why wasn't an MRI ordered in the first place instead of a CT scan? Why did they take up my time to tell me they can't tell me anything? Clearly I'm not running the health care system because it would not be this disjointed. Everything about it is wrong. So now I sit in the Midwest, waiting for a Monday appointment with the surgeon to see if surgery is a possibility. Preceded by a 6 hour drive back to Minnesota, it should take about 1.5 milliseconds. The answer is either yes or no.
UGH! It's getting harder and harder to contain my Godzilla side. Perhaps it's just time to let it go.
I'm sorry to my Nebraska people for not being in contact. My trip to Nebraska was literally last minute. I simply need some down time. I also do not want my pent-up rage to be unleashed unnecessarily on the wrong people. Please except my deepest apologies. I truly love you all.
Mayo on the Side
I finally get why they call it a fight. I'm in quicksand fighting my way out. Little known fact: you're not supposed to struggle should you find yourself in quicksand as it causes you to sink faster. But struggle I am. In my skewed perspective of how things work, I envisioned doctors and nurses gracefully, magically appearing at my bedside with reassuring smiles as they inject new and improved drugs into my IV. Meanwhile, a lovely cocktail of pain meds keeps a blissful grin on my face as I slip into peaceful slumber. The drugs devour the cancer cells and pain medication brings hazy, enchanted dreams. Birds land on the windowsill and sing cheery tunes while bunnies and squirrels change the bedding and fluff the pillows.
Apparently, this is not the case.
I called the Mayo Clinic in Minnesota last week to, as I can only find one way to explain it, beg them to save my life. I had no idea how much work it is to have cancer. I called Mayo for an appointment with a nueroendrocrine specialist. I am constantly researching. I am reading book after book about cures, symptom containment, herbal remedies, and more. I have to decide what to do. I have to adjust this straight jacket because it's a bit difficult to type. I emailed my Interventional Radiologist this week and ASKED to be chemoed. I'm officially looney bin material. If we are putting surgery on hold for awhile, I decided to do another chemo treatment to the liver. There are new tumors on the right side and they did not ask nicely to hang out in my abdomen. No "please" means you meet Dr. Johnson and his little bag of tricks.
I feel great and I'd say it's mostly attributed to the fact I now weld the control. Power is exhilarating. All the movies I've seen with a power-hungry lead character who must destroy anything in his way are totally true. Move over Thor and Captain America! There's a new superhero in town.
I must specify: move into my place Thor and Captain America.
So, I'm off to majestic Minnesota. I hear it's lovely this time of year. The doctors at the Mayo Clinic better have their game faces on, otherwise you'll hear my Godzilla-portioned tirade from your respective location on the planet. Maybe someone should warn them.
Apparently, this is not the case.
I called the Mayo Clinic in Minnesota last week to, as I can only find one way to explain it, beg them to save my life. I had no idea how much work it is to have cancer. I called Mayo for an appointment with a nueroendrocrine specialist. I am constantly researching. I am reading book after book about cures, symptom containment, herbal remedies, and more. I have to decide what to do. I have to adjust this straight jacket because it's a bit difficult to type. I emailed my Interventional Radiologist this week and ASKED to be chemoed. I'm officially looney bin material. If we are putting surgery on hold for awhile, I decided to do another chemo treatment to the liver. There are new tumors on the right side and they did not ask nicely to hang out in my abdomen. No "please" means you meet Dr. Johnson and his little bag of tricks.
I feel great and I'd say it's mostly attributed to the fact I now weld the control. Power is exhilarating. All the movies I've seen with a power-hungry lead character who must destroy anything in his way are totally true. Move over Thor and Captain America! There's a new superhero in town.
I must specify: move into my place Thor and Captain America.
So, I'm off to majestic Minnesota. I hear it's lovely this time of year. The doctors at the Mayo Clinic better have their game faces on, otherwise you'll hear my Godzilla-portioned tirade from your respective location on the planet. Maybe someone should warn them.
Sour Grapes
Time out. I'm calling time out and throwing a penalty flag. Too many men on the field. So far, I've been advised about my treatment plans by a male surgeon, a male interventional radiologist, and a male oncologist at Kasier. Now we've thrown into the mix another surgeon and oncologist from the University of Colorado Hospital. Both male. Where are the women in this mix?!?!
My team and I are regrouping after being handed a bit of a shock from the doctors at University of Colorado Hospital. A good shock, don't panic, but a shock none the less. I think it's time for me to reassert myself as the official in this game.
And what a game it is.
After extensive anxiety and hesitation about the Whipple procedure, I was strongly convinced by my surgeon at Kaiser it is the best course. We Could Go All The Way!!! Win the championship and take home a shiny trophy. If it were up to him, I'd already be cut up and recovering as he wanted to schedule my surgery for mid-October. The single appealing aspect of this is my reunification with my beloved Morphine Pump (see Through the Grapevine for explanation.) Wait, I lied, there are two appealing aspects, I would also be minus one pancreatic tumor, a foggy daydream at this juncture. I abandoned my "the Whipple removes so much of my insides, redirects my digestive system, requires a long recovery and renders me diabetic.... ALL of which can't be undone and I'm only 32" path at the paradoxical fork in the road. I took up course on the "I'm SO strong and this will be SO HARD but I can do it, I can do ANYTHING! No Katy Perry, you hear ME roar!" trail. Full speed ahead.
Whistle blows. The referee waves his arms. The previous play is under review.
I want a second opinion. What we heard at the University of Colorado Hospital was what I've wanted to hear ALL ALONG. It was a strategy right from my own playbook. As I said, I am not a fan of the Whipple, so hearing what we did was good..... HOWEVER, I could barely see straight enough to listen to anything.
A team of doctors with different specialties reviewed my case. This pack included a surgeon, oncologists , ect. The surgeon lost me straightaway when, milliseconds after entering the room, he asked, "What is this?" and gestured to the iPad I set up to record our conversation. How dare you vilify one of my Apple products. And who doesn't know what an iPad is?
"An iPad," I replied in a tone dripping with its own disdain and a chalk full of scorn. I knew what was to follow....
"Please turn it off. It alters the tone of our conversation." While stopping the recording, I turned to my sister and mouthed, "Pissed!" Who are you to tell me I can't record a conversation about my body! Since I was caught off guard, I couldn't think coherently enough to get my way or just leave the damn thing on. I understand you don't want to be sued but what would you say differently while being recorded? Makes me wonder.
The doctor's misfortune continued when he commenced his spiel. Although I was perched atop the thin layer of paper adorning the patient's table, he began to address my mom. He told her they have reviewed her scans and labs, a panel of doctors have come to a consensus about treatment options, but first, we'd like to hear about her symptoms, what first made her think something was wrong? My mother motioned to the actual (crossed-armed, visibly furious) patient, yours truly, and explained coolly she doesn't have cancer.
Allow me to digress:
Sooooooooo, sir.......... when you and this alleged panel of alleged doctors were allegedly reviewing my scans and all other things medical.... it never came up that I'm 32 years old? From what I've heard, cancer treatment varies quite a bit depending on the patient's age and several other factors, so age would/should be discussed. How did you just walk into a room and not know who is the patient? I markedly look 32. In fact someone just the other day said I look 25! So there! (I had to throw that in my rant.) Did you get high at lunch? YOU ARE TALKING ABOUT MY LIFE! L-I-F-E. Here's a little idea. I came up with it right off the top of my head: get the patient's name before you walk in their room, introduce yourself to the humans in the room, make a match between human and name. Mind-blowing, I know.
As I sat atop my paper covered perch, shaking from distress and desperately trying to make my notes legible, we learn of a magical chemo pill used specifically in cases like mine to shrink the tumors. WHAT?!?!?! I was diagnosed in May, it's now October and this is the first I'm hearing of this? Excuse me for being more than a little exasperated.
If we were to do the Whipple operation to resect the pancreatic tumor, all treatment of the tumors in the liver would halt during recovery. Most of the tumors in the liver treated during the chemo embolizations have responded (yay!) but there are still some residual tumors. It could be very dangerous if these tumors were to grow or spread. This chemo pill will target the spread and growth. So very technical of me to call it a chemo pill, yes? Guess I don't have that medical degree just yet... but I'm close.
Something told me I needed to talk to someone else. I listened and earned my spot in the Hall of Fame for it! Even though I was not incredibly happy with who I talked to, I heard the opposite of what the Kaiser surgeon was telling me. I knew there was something wrong with the Whipple surgery. I'm not in the end zone just yet. Not even near the 50-yard line. There is still a surgery in the mix. Truthfully, the Whipple is still a possibility. The hope is after the magic beans do their tricks, my pancreatic tumor will be cut out along with my spleen. Sorry Spleeny, I don't know who you pissed off but I guess your karma is on the same playing field as mine.
Another point of contention came up when we were told part of my pancreas could be saved. The people at UC Hospital say the head of the pancreas could be saved. The body, where the tumor is located, would be removed along with the tail which is basically atrophied at this point. The surgeon at Kaiser says the tail might be saved, if any of my pancreas can be salvaged.
These statements do not match.
My head is spinning.
Upon completing some research on the chemo drugs in question, I have VERY strong doubts. Until I hear from a credible, neuorendrocrine specialist, I have several reasons to abstain. I know my cancer is very rare but there has to be a neuroendocrine specialist somewhere..... I'm just like Fievel, wearing tattered clothing and singing to the moon, "Somewhere out there...."
First, according to the drug's very own website, only 9% of people experienced any shrinkage (why does this word make me giggle?). Clearly I'm not a mathematician. I couldn't even spell mathematician. If I were to make wild guess, 9% isn't very high.....? This chemo pill sounds fine and dandy when the doctors are pitching it, but, upon reflection, that's exactly what it felt like: a sales pitch. Who is in the background telling the doctors to tell me? What's in it for them? Excuse me for sounding like a conspiracy theorist. Did I mention this medication just so happens to be around $3,000 a month? Plus, there are extreme risks associated with it. So, it begs the question: who benefits from this pill? It certainly doesn't seem like it would be ME.
So here goes.....
Sutent ("the chemo pill") metabolizes in the liver. The first of many intense side-effects being damage to the liver. There is a huge risk to the liver and it says so several times on the drug's website.* According to my latest blood tests taken on October 2nd, my liver is showing signs of damage. This is the first time my blood tests have come back abnormal, meaning my liver is being impacted by the chemo embolizations. Results from the Oct 2nd blood tests show my alkaline phosphatase levels to be 182. The normal range is 28-111. My ATL (76) and AST (67) levels were also high. These tests determine liver damage and high numbers indicate damage. If you peruse through the drug's website, it warns of the liver damage (and death) several times.
I'm of the opinion more damage should NOT be done to my liver. Shrug, shrug, eyebrows raised. I can apparently live and function without a pancreas, but replacing my liver would be much more harrowing. According to UCH, a live-doner transplant is off the table and it's not promising to be on the transplant wait list. As much as possible, focus should be on keeping my current liver as healthy as possible.
The side effect inventory continues. It includes issues with heart function. I've been down this road before, my heart has already undergone a procedure to "fix" it. I found this on the Mayo clinic's web-site, (see the 6th and 7th paragraph-- and all the paragraphs): heart side effects. As with my liver, I'm going to advocate for my heart. She has been through quite enough and doesn't need a chemo pill, with a measly 9% chance of shrinking my pancreatic tumor, messing her up again. Plus, I kind of need a heart for, you know, living. I also noticed on the side-effect list "can cause liver problems" is immediately followed by "including death."
Liver risks=scary
Heart risks=scarier
Death risks=scariest
Cancer, you have me an impasse. I don't know what to do. I'm sure I'll figure it out but right now, I'm stumped.
Cancer 1, Lindsey 0
*Reminder: while you read on the websites linked above or any website, keep in mind my cancer is pancreatic NET (neuroendocrine tumor.)
This post is dedicated to my mom, Jennifer Drahota. Mom, you could easily pass for someone much younger! Please don't misconstrue my anger at this man who walked into my appointment and started talking to you as though you are the 32-year-old patient as anything but a human who made a mistake with the wrong Cancer who can't let it go. You have been really wonderful during all of this. I can't imagine doing any of it without you taking care of me, your little girl, as you always have.
Busy Bee
My to-do list:
1. Buy a walker now that I'm 90 years old.
By no means do I intend to offend any person advanced in age. In contrast, I'm quite jealous and applaud your strength. Congratulations on achieving old age. Our commonalities are not things most people my age find routine. Like, for example, walking slowly or riding the elevator. Eating like a bird and doing so around 4:00. Going to bed around 8 o'clock. Or even 7.... alright, alright, OR even earlier sometimes. The time we arise is probably comparable as well if you're getting up before the sun... and your alarm. Oh, you don't have to set an alarm since you're retired? Retirement. Here is something we do not share, much to my dismay. How lovely to attend appointments by the thousands, face treatment after treatment, sleep when exhausted, and rest when in pain without the constant anguish of using sick days. How does one get money without having to work?
2. Figure out how to get money without having to work.
3. Buy tennis balls for my walker.
4. Invent a new word for thank you.
At the risk of sounding redundant, I have a lot of people to thank. However, I lack adequate means to accomplish this task. "Thank you." Ack- boring. It's Marty McFly's fading image in the photograph he carries in Back to the Future. I'm over it. I need a shiny, new method of showing my gratitude!
A Turkish proverb states: thorns and roses grow on the same bush. This is the most accurate reflection of my current situation. One of my bright, cheery roses is a slimmer body in a size I haven't been since before middle school! I'm definitely not bragging. I'd much rather be my usual shape and healthy... but it's freaking fantastic to buy jeans in the same size as your girlfriend who you look at thinking, "Dang she's skinny." Another colorful rose is remaining healthy looking and keeping my hair. I'm incredibly grateful for this. I sound shallow and frivolous but having no control over the happenings in your body where cancerous cells are rapidly dividing and obliterating your internal organs will do this to you. I'm very often in pain or feeling discomfort so at least I can look well on the outside. Finally, the colossal, exceptionally fragrant rose is the uncommon opportunity to find out how many people in this world love you. Truly, I don't think people stop to realize how much love surrounds them at all times. Presently, I know. And I'm thankful. __(insert new word here)__ for the cards, love, hugs, prayers, thoughts, care packages, love, chats, presents, prayer quilts, love, blog-reading, flowers, smiles, and love.
5. Create zillions of cards with my new word for thank you.
Become a zillionaire. Cross off #2.
6. Blunder into a cartoon-like situation where the zany, scientific character creates a way to enhance brain power thereby giving me the capacity to make life-altering decisions with ease.
I'm Gollum-like obsessed with the few remaining brain cells I posses. My precious lone troopers and I are faced with some pretty harrowing decisions. It's taken some time, major convincing AND a trip to meet with the "experts in their fields" at the University of Colorado hospital (one of the best hospitals in the nation has apparently just been sitting right under my nose this whole time.) but I'm going to go ahead with surgery. I had hoped to be referred to Mayo or John's Hopkins. No, I'll simply drive to Aurora, a Denver suburb not exactly known for its aesthetics and tolerance, a trip typically only reserved for passage to the airport. During my consolation, the leading expert in all things pancreas Dr. _______ (I forgot his name), several other doctors and my surgeon, Dr. Weinfeld, will form a panel and review my case. Since I have a wildly rare cancer, it's good to hear what everyone has to say on the matter. The process will last the entire day so I shall don a tiara and sash reading, "Queen for the Day" and assume everyone is at my whim.
The surgery in discussion will considerably alter my life. Surprise! Maybe at this point I should just be used to having life-altering news flashed in my face. My surgeon doesn't think there will be enough of my pancreas to salvage. If there is, it won't be much and not enough for it to operate at normal capacity. I was reverently assured you can live without a pancreas, a large hurdle for me to leap as I was convinced of the opposite. Following this extraction, I'll be rendered diabetic. A diabetic is a person with a pancreas that doesn't function or functions poorly. I'll be a person without a pancreas that doesn't function. After my pancreas checks out, I'll take over its job of providing the digestive process with insulin and enzymes. I'm already taking enzymes every time I eat so this won't be new. I had hoped to discontinue this practice post-cancer but I guess I'll just find new love for my little enzyme friends. The insulin thing will be all new to me.
7. Tackle insulin obstacle when I get there.
The surgery is tentatively being placed sometime at the beginning of November. Dr. Weinfeld, who just recently started sporting a goatee, and I will be in the operating room for 8+ hours. I assume he'll head home after this to watch football and eat wings on the couch while I hang at the hospital for awhile. More to come on this as I don't know the all the details of what happens after surgery, for Weinfeld or myself. Maybe instead of wings he'll have popcorn and watch the Voice. Perhaps it will be a sandwich and a John Hughes movie. I just won't know until I can investigate further.
8. Check into Weinfeld's post-survey routine.
First up is the panel at University hospital, then figuring out time off of work, then surgery. Baby steps. Just like Bob.
This post is dedicated to Joseph Davis. He lost his mother to cancer yesterday. I write a lot of words about myself and yet I have none to give him. In the absence of the right words, I offer these. Jos, I love you. I haven't stopped thinking about you since you gave me the news earlier today. And I will not stop thinking of you. Betsy put it best when she said you have an ability to handle things in a higher way than we do. You do.
1. Buy a walker now that I'm 90 years old.
By no means do I intend to offend any person advanced in age. In contrast, I'm quite jealous and applaud your strength. Congratulations on achieving old age. Our commonalities are not things most people my age find routine. Like, for example, walking slowly or riding the elevator. Eating like a bird and doing so around 4:00. Going to bed around 8 o'clock. Or even 7.... alright, alright, OR even earlier sometimes. The time we arise is probably comparable as well if you're getting up before the sun... and your alarm. Oh, you don't have to set an alarm since you're retired? Retirement. Here is something we do not share, much to my dismay. How lovely to attend appointments by the thousands, face treatment after treatment, sleep when exhausted, and rest when in pain without the constant anguish of using sick days. How does one get money without having to work?
2. Figure out how to get money without having to work.
3. Buy tennis balls for my walker.
4. Invent a new word for thank you.
At the risk of sounding redundant, I have a lot of people to thank. However, I lack adequate means to accomplish this task. "Thank you." Ack- boring. It's Marty McFly's fading image in the photograph he carries in Back to the Future. I'm over it. I need a shiny, new method of showing my gratitude!
A Turkish proverb states: thorns and roses grow on the same bush. This is the most accurate reflection of my current situation. One of my bright, cheery roses is a slimmer body in a size I haven't been since before middle school! I'm definitely not bragging. I'd much rather be my usual shape and healthy... but it's freaking fantastic to buy jeans in the same size as your girlfriend who you look at thinking, "Dang she's skinny." Another colorful rose is remaining healthy looking and keeping my hair. I'm incredibly grateful for this. I sound shallow and frivolous but having no control over the happenings in your body where cancerous cells are rapidly dividing and obliterating your internal organs will do this to you. I'm very often in pain or feeling discomfort so at least I can look well on the outside. Finally, the colossal, exceptionally fragrant rose is the uncommon opportunity to find out how many people in this world love you. Truly, I don't think people stop to realize how much love surrounds them at all times. Presently, I know. And I'm thankful. __(insert new word here)__ for the cards, love, hugs, prayers, thoughts, care packages, love, chats, presents, prayer quilts, love, blog-reading, flowers, smiles, and love.
5. Create zillions of cards with my new word for thank you.
Become a zillionaire. Cross off #2.
6. Blunder into a cartoon-like situation where the zany, scientific character creates a way to enhance brain power thereby giving me the capacity to make life-altering decisions with ease.
I'm Gollum-like obsessed with the few remaining brain cells I posses. My precious lone troopers and I are faced with some pretty harrowing decisions. It's taken some time, major convincing AND a trip to meet with the "experts in their fields" at the University of Colorado hospital (one of the best hospitals in the nation has apparently just been sitting right under my nose this whole time.) but I'm going to go ahead with surgery. I had hoped to be referred to Mayo or John's Hopkins. No, I'll simply drive to Aurora, a Denver suburb not exactly known for its aesthetics and tolerance, a trip typically only reserved for passage to the airport. During my consolation, the leading expert in all things pancreas Dr. _______ (I forgot his name), several other doctors and my surgeon, Dr. Weinfeld, will form a panel and review my case. Since I have a wildly rare cancer, it's good to hear what everyone has to say on the matter. The process will last the entire day so I shall don a tiara and sash reading, "Queen for the Day" and assume everyone is at my whim.
The surgery in discussion will considerably alter my life. Surprise! Maybe at this point I should just be used to having life-altering news flashed in my face. My surgeon doesn't think there will be enough of my pancreas to salvage. If there is, it won't be much and not enough for it to operate at normal capacity. I was reverently assured you can live without a pancreas, a large hurdle for me to leap as I was convinced of the opposite. Following this extraction, I'll be rendered diabetic. A diabetic is a person with a pancreas that doesn't function or functions poorly. I'll be a person without a pancreas that doesn't function. After my pancreas checks out, I'll take over its job of providing the digestive process with insulin and enzymes. I'm already taking enzymes every time I eat so this won't be new. I had hoped to discontinue this practice post-cancer but I guess I'll just find new love for my little enzyme friends. The insulin thing will be all new to me.
7. Tackle insulin obstacle when I get there.
The surgery is tentatively being placed sometime at the beginning of November. Dr. Weinfeld, who just recently started sporting a goatee, and I will be in the operating room for 8+ hours. I assume he'll head home after this to watch football and eat wings on the couch while I hang at the hospital for awhile. More to come on this as I don't know the all the details of what happens after surgery, for Weinfeld or myself. Maybe instead of wings he'll have popcorn and watch the Voice. Perhaps it will be a sandwich and a John Hughes movie. I just won't know until I can investigate further.
8. Check into Weinfeld's post-survey routine.
First up is the panel at University hospital, then figuring out time off of work, then surgery. Baby steps. Just like Bob.
This post is dedicated to Joseph Davis. He lost his mother to cancer yesterday. I write a lot of words about myself and yet I have none to give him. In the absence of the right words, I offer these. Jos, I love you. I haven't stopped thinking about you since you gave me the news earlier today. And I will not stop thinking of you. Betsy put it best when she said you have an ability to handle things in a higher way than we do. You do.
Through the Grapevine
Round two of chemo is in the bag.
Morphine Pump and I were introduced shortly after I was delivered back to my room. My liver's second chemo embolization was complete. From what I can remember through the pain and drugs, the situation was as follows. I emerged from the anesthesia. Shards of searing pain ripped through my abdomen like a high-speed train tearing its way across the terrain, fiery sparks flying from the wheels as they barely retained their grip on the tracks. I vomited. Clear liquid filled the forest-green bag they held to my face. A strange, tingling in my legs could only be construed in my not-so-cognizant state as, "SOMETHING IS SO SERIOUSLY WRONG I'M BECOMING PARALYZED." Pain. I may or may not have been little hysterical. More pain. Epic thirst levels. A bright light appeared and I started to walk towards it. More pain.
Before I reached the warm, white glow, it was decided a morphine drip would be put in place. So, I remained, for the time being, a member of Earth. The chemo (probably) wouldn't have killed me but since it was trying it's damnedest to do just that, Morphine Pump intervened. Insert super hero anthem here. Round two has proven infinitely worse than his predecessor. MP kept me from doing my best Bond villain and popping the syaniade capsule hidden in my hair. After round one I napped a little, ate dinner courtesy of my sis, read until midnight, tried unsuccessfully to sleep, and went home grumpy in the morning. Not so much this time.
I slept straight through the post-procedure hours I must spend lying still so my vein clots. Anytime I awoke, Morphine Pump was there with a smile to gently chuck me under the chin and guide me back to dreamland. This was a perk as these hours draaaaaaaaagggggged by the first time. Another perk of this drugged-induced slumber is not using the bed pan.... ugh, enough said. Any time I needed to get up, which wasn't often, it was quite a production. The odd little pumps on my legs to correct the tingling had to be detached, my oxygen nose piece removed, the IV pole rolled with me, etc. I could not eat. At a certain point, my father lovingly told me I was going to eat. A banana seemed like an innocent choice. One bite and I vomited. Another forest green bag was filled with clear liquid. What didn't make it into the bag was promptly whisked away once the nurse was buzzed and my bedding/gown changed... again. Although it didn't seem like I would, I made it through the night.
I have yet to figure out how or why people use pain medications recreationally. I experience unrelenting side effects when I take prescription pain meds. My post-chemo pain levels were apocalyptic and even facing this ominous suffering, I hesitated to use the Oxycodone prescribed to me. This is the alternative to the Dilaudid I was given the first time around, which I staunchly refuse to ever take again. This alternative has proven to be an epic failure on my rating scale of pain meds. I only want medications that do not metabolize in the liver. Of the three I've experienced so far my rating scale is as such:
BEST PAIN MEDICATION EVER = Morphine. Ahhh, I have warm-fuzzies just thinking about it.
WORST PAIN MEDICATION EVER = anything else.
I know I'm biased since Morphine Pump and I became so close but I still think this scale is fairly scientific. So, upon my release from the hospital and an agonizing good-bye with MP, I was forced to use the Oxycodone to attempt to alleviate some of my pain. At one point I wondered if I had an 'Aliens' situation on my hands. Was an extraterrestrial being mutilating my insides as it prepared to claw it's way out of my midriff (click here if you don't know what I'm referencing)? Did they do the chemo wrong and all of my internal organs were dissolving? Had I been sawed in half during a magic show gone wrong? My only hope of some respite from this torment was to pop a pill. Following this action I would have to find a quite, dark space where I could wait out the incapacitating migraine. Sleep was my reprieve so I took long naps. And this is how I passed my days. Pain, pill, wait out the side effects. Lather, rinse, repeat. This medication is a narcotic, the same category shared with meth. Forget any desire to eat. Forget the end result of eating as narcotics notoriously cause constipation. Interestingly, I felt itchy while taking this medication which explains why meth users are always scratching and are riddled with open sores- I was coming close to the same look. Eventually the pain lessened enough I could just tough it out. Or perhaps I just decided the pain medication was no longer for me.
Disclaimer: to those who were actually around during these events, if I've misreported them in any way I apologize. I'm merely giving the account as I recall and let's face it, I heavily drugged. I'm not trying to enter into an Oprah vs. James Fray situation so we'll just pretend this is exactly what happened.
I slept straight through the post-procedure hours I must spend lying still so my vein clots. Anytime I awoke, Morphine Pump was there with a smile to gently chuck me under the chin and guide me back to dreamland. This was a perk as these hours draaaaaaaaagggggged by the first time. Another perk of this drugged-induced slumber is not using the bed pan.... ugh, enough said. Any time I needed to get up, which wasn't often, it was quite a production. The odd little pumps on my legs to correct the tingling had to be detached, my oxygen nose piece removed, the IV pole rolled with me, etc. I could not eat. At a certain point, my father lovingly told me I was going to eat. A banana seemed like an innocent choice. One bite and I vomited. Another forest green bag was filled with clear liquid. What didn't make it into the bag was promptly whisked away once the nurse was buzzed and my bedding/gown changed... again. Although it didn't seem like I would, I made it through the night.
I have yet to figure out how or why people use pain medications recreationally. I experience unrelenting side effects when I take prescription pain meds. My post-chemo pain levels were apocalyptic and even facing this ominous suffering, I hesitated to use the Oxycodone prescribed to me. This is the alternative to the Dilaudid I was given the first time around, which I staunchly refuse to ever take again. This alternative has proven to be an epic failure on my rating scale of pain meds. I only want medications that do not metabolize in the liver. Of the three I've experienced so far my rating scale is as such:
BEST PAIN MEDICATION EVER = Morphine. Ahhh, I have warm-fuzzies just thinking about it.
WORST PAIN MEDICATION EVER = anything else.
I know I'm biased since Morphine Pump and I became so close but I still think this scale is fairly scientific. So, upon my release from the hospital and an agonizing good-bye with MP, I was forced to use the Oxycodone to attempt to alleviate some of my pain. At one point I wondered if I had an 'Aliens' situation on my hands. Was an extraterrestrial being mutilating my insides as it prepared to claw it's way out of my midriff (click here if you don't know what I'm referencing)? Did they do the chemo wrong and all of my internal organs were dissolving? Had I been sawed in half during a magic show gone wrong? My only hope of some respite from this torment was to pop a pill. Following this action I would have to find a quite, dark space where I could wait out the incapacitating migraine. Sleep was my reprieve so I took long naps. And this is how I passed my days. Pain, pill, wait out the side effects. Lather, rinse, repeat. This medication is a narcotic, the same category shared with meth. Forget any desire to eat. Forget the end result of eating as narcotics notoriously cause constipation. Interestingly, I felt itchy while taking this medication which explains why meth users are always scratching and are riddled with open sores- I was coming close to the same look. Eventually the pain lessened enough I could just tough it out. Or perhaps I just decided the pain medication was no longer for me.
Disclaimer: to those who were actually around during these events, if I've misreported them in any way I apologize. I'm merely giving the account as I recall and let's face it, I heavily drugged. I'm not trying to enter into an Oprah vs. James Fray situation so we'll just pretend this is exactly what happened.
Following chemo I'm ten years old. During recovery, I regressed to being driven around, cooked for and generally brought anything I needed to remain alive. I barely had to lift a finger (by doctors orders- I'm not allowed to lift more than 10 pounds for two weeks while the clot in my vein heals.) And now I no longer know how to be a grown-up. Where will my next lunch come from? How do I get water in this cup? What pj's should I wear to bed? The Disney Princesses ones? I agree.
Fruity
It's been a month since my first chemo. The ups and downs of the past 5 weeks share altitudes with the Himalayas and depths of the Mariana Trench. Single-handedly, I faced down soul-pulverizing sadness and despair. Hand over hand I crawled out of that dark hole, regained my optimism, and reworked my entire thought process. It's a bit of an endeavor to be in constant battle with your body and an uncooperative mind. The thing about cancer is, if you have cancer, you don't ever think about anything else. Thoughts might share some head space momentarily but really all you're capable of seeing, hearing, breathing, tasting, feeling is cancer. Cancer, cancer, cancer, cancer, cancer.
For a maddening two weeks, I was utterly lost in sorrow. I couldn't do much besides cry and think about dying. Weakened from chemo I was unable to lead my normal, active life. A sentence from the internet burned like the Eternal Flame behind my eyelids every bitter moment of the day. Yes, I broke my own avoid-Google rule. I refuse to give any credence to said sentence so I will not repeat it here. On the other side of this harrowing episode, I picture a Sunday morning newspaper cartoon. The image is just a black circle with a stick figure climbing from the hole looking frazzled but smiling. I've emerged! I guess that was what you would call a rough patch. The one and only I will endure. It was horrendous and I'm not doing it again.
My rise from the cavern has brought about a restored attitude. I feel so great. I continually focus on thoughts of being healed and what I will do now that the cancer is gone. The only statements allowed in my realm must all reflect positive sentiments as though we're on the other side everything is swell. Now I'm picturing 1950's suburbia: vivid green grass, brilliant blue sky, children laughing and playing as a stroll along in my pink, poodle skirt and perfectly coiffed hair.
This weekend I was able to walk around the park. Wait for it.... not once, but twice! A nominal feat just half a year ago. Now, at 32 years of age, a huge accomplishment. Let me tell you, it felt amazing. A-MAZE-ING! Equally amazing: Acupuncture. New obsession. Also, I started my new job (same school) and I'm madly in love with it.
Countdown to round two of chemo has begun. T-minus two weeks. Ready or not......
A Cherry On Top
Prologue: This blog has taken on a form of therapy for me. This post, in particular, is very therapy-y. So, get your wool sweater on, reading glasses down to the tip of your nose, and legal pad out. I'm laying on the couch in your office, blabbering ....
Since I was can remember, which in my brain is about the age of 20, I've suffered from depression. Not the kind of depression where you feel sad because something sad just happened. The kind of depression where you feel forlorn/tired/overwhelmed/despondent but nothing has happened. This is weird thing. It's impossible for "normal" people to understand and just as impossible to avoid the stigma that goes along with it. In today's Western age of over-diagnosed/over-prescribed anti-depressants, I suppose the stigma has lessened but when I first began my journey with this, I felt helpless and alone. Depression isn't cancer for example. People don't empathize with you when you're depressed. They say things like: cheer up, it will get better, and my favorite: hang in there. Since you can't see depression it's easy to keep it hidden. Which is what I did. And if I could just pat myself on the back for moment, I believe it did pretty well.
Depression is a strange and unpredictable beast. It sneaks up on you when you least expect it. Around hour 14 of laying in bed (a common place for me when the big D reared it's ugly head), I would begin wondering: what about people out there who have it WAY WORSE than me? A majority of my twenties were spent grappling with embarrassment and shame. I was ashamed to feel sad when larger problems are actually sad. I often found myself thinking about the world and the enormity of it. The magnitude of human suffering is so vast and atrocious... and here I was, a girl who had everything I needed: access to more food than I could ever eat (thank you America), shelter- which wasn't being bombed, my village wasn't overrun with disease, a plethora of family and friends who love me... why the hell am I sad?!
Since I was can remember, which in my brain is about the age of 20, I've suffered from depression. Not the kind of depression where you feel sad because something sad just happened. The kind of depression where you feel forlorn/tired/overwhelmed/despondent but nothing has happened. This is weird thing. It's impossible for "normal" people to understand and just as impossible to avoid the stigma that goes along with it. In today's Western age of over-diagnosed/over-prescribed anti-depressants, I suppose the stigma has lessened but when I first began my journey with this, I felt helpless and alone. Depression isn't cancer for example. People don't empathize with you when you're depressed. They say things like: cheer up, it will get better, and my favorite: hang in there. Since you can't see depression it's easy to keep it hidden. Which is what I did. And if I could just pat myself on the back for moment, I believe it did pretty well.
Depression is a strange and unpredictable beast. It sneaks up on you when you least expect it. Around hour 14 of laying in bed (a common place for me when the big D reared it's ugly head), I would begin wondering: what about people out there who have it WAY WORSE than me? A majority of my twenties were spent grappling with embarrassment and shame. I was ashamed to feel sad when larger problems are actually sad. I often found myself thinking about the world and the enormity of it. The magnitude of human suffering is so vast and atrocious... and here I was, a girl who had everything I needed: access to more food than I could ever eat (thank you America), shelter- which wasn't being bombed, my village wasn't overrun with disease, a plethora of family and friends who love me... why the hell am I sad?!
So, what happened to change all this: aging. Sound the trumpets and sing joyous tunes. The sliver-lining to aging is knowing yourself. As I entered my thirties just a short 24 months ago, I began to really understand and know myself. I was no longer lost in the excitement and constant rush of my twenties. The depression began to abate. Life became more tangible and coherent. The coping mechanisms I used were needed less and less. It is in this vein, my depression and I reached an understanding. I recognized he was going to stick around but he realized that I'm on to him. Insert evil laugh. I'm no longer blind-sided by bad days/weeks/months. I'm in control. While these days still exist, they are now comprehensible and manageable instead of agonizing.
You may be thinking, why is she taking about depression? Isn't this blog about cancer? The answer is simple. Since cancer has been bestowed upon me, things have changed. Perspective is a word thrown around a lot but it actually has meaning to one such as myself. You would think depression is the first thing that someone feels when learning they have cancer, but not in this case.
When a doctor says the word cancer after you've been though a gamut of testing, nothing is the same again. N.O.T.H.I.N.G. Your face is unexpectedly jerked to the right because you've been slapped with a word no one is ever ready to hear. You're immediately reeled the opposite direction as unknowns of universal sizes spread out before you. And simultaneously, an impenetrable wall with the word MORTALITY graffitied across it manifests a mere two centimeters from the tip of your nose. Your mortality stares you in the face and you can't out-stare it, or run, you just have to look directly back at it. It's about this time you start to think, how the hell am I supposed to deal with this?
Clearly, I don't know the answer to that. Nor would I ever claim to. I've tried some things that work and some that don't. For example, retail therapy. Yes, this is a fun way pass the time and it sure takes your mind off the fact you have cancer when you have to decide between the mint green or orange tank with these skinny jeans.... but then Capital One comes a calling and you realize that hiring a human therapist would have been cheaper. Traveling was a great time! I know how lucky I was to have a trip already booked two weeks out from receiving word that all my pain and suffering is cancer (not just a something silly as I assumed it would be). This was great way to escape... for a bit. Side note: a huge thank you to Dr. Eadens for giving me the okay to partake in my trip. Not that I would have skipped it, but I know it made my mom feel better to have the doc's approval. (After she was initially mad at him for saying yes-- you should have seen her face, priceless.)
I'm taking time to realize who I am and what I want and enjoying it. I live in a city nestled up against the mountains. When not doing one of the million things Denver has to offer, you head up to the Rockies to for the endless activities offered up by Mother Nature. I love hanging out with my friends in ANY capacity. Whether its climbing mountains, sitting around a pool, drinking wine on a rooftop, or picnicking in the park. I find this amazing clarity around my people and it's electric. I'm no longer adrift at social events, I feel how much people love me and how much I love them! It's beautiful. It's powerful. I wish for you to experience this but since I had to get cancer to obtain this perspective, I won't do so. The school I work at, am a part of, is overflowing with incomparable, remarkable people who are beyond the words I could put here. My landing at Brown was so crazy and random and it was absolutely meant to be.
Clearly, I don't know the answer to that. Nor would I ever claim to. I've tried some things that work and some that don't. For example, retail therapy. Yes, this is a fun way pass the time and it sure takes your mind off the fact you have cancer when you have to decide between the mint green or orange tank with these skinny jeans.... but then Capital One comes a calling and you realize that hiring a human therapist would have been cheaper. Traveling was a great time! I know how lucky I was to have a trip already booked two weeks out from receiving word that all my pain and suffering is cancer (not just a something silly as I assumed it would be). This was great way to escape... for a bit. Side note: a huge thank you to Dr. Eadens for giving me the okay to partake in my trip. Not that I would have skipped it, but I know it made my mom feel better to have the doc's approval. (After she was initially mad at him for saying yes-- you should have seen her face, priceless.)
I'm taking time to realize who I am and what I want and enjoying it. I live in a city nestled up against the mountains. When not doing one of the million things Denver has to offer, you head up to the Rockies to for the endless activities offered up by Mother Nature. I love hanging out with my friends in ANY capacity. Whether its climbing mountains, sitting around a pool, drinking wine on a rooftop, or picnicking in the park. I find this amazing clarity around my people and it's electric. I'm no longer adrift at social events, I feel how much people love me and how much I love them! It's beautiful. It's powerful. I wish for you to experience this but since I had to get cancer to obtain this perspective, I won't do so. The school I work at, am a part of, is overflowing with incomparable, remarkable people who are beyond the words I could put here. My landing at Brown was so crazy and random and it was absolutely meant to be.
The silver lining to cancer is falling in love with yourself. I love me.
Just Peachy: Part 2
Apparently a vacation four days after chemo is ill
advised. However, it is great way to spend some time at the Kaiser ER in
San Diego. If that place isn’t in the travel guides, it really should
be.
I'm
awakened at 6:00 am to the harshest pain I’ve ever experienced in my
life the day we’re headed to the beach and a baseball game. Okay, worst pain ever might be a slight exaggeration but
I’ve been with Tiff for the past week so all I know is embellishment – she’s
rubbed off on me. I couldn’t lie down, I couldn’t sit up, I couldn’t do
anything. I was overcome by sharp, driving
pains in my abdomen. I literally cried out every time one shot through my
midsection. It was awful.
I called my oncologist’s office. I explained to a nurse what is going on and after finding my oncologist she
says, “You should go to the emergency room.” I'm astonished.
She retorts, “You sound surprised.” Uhh,
yeah I’m surprised! I’m on
vacation, I don't want to spend any of it in a hospital, and I don’t want to pay for a trip to the ER. I decide to see if the pain worsens and if it does, go to
the ER. I also call Rene, nurse extraordinaire from my Interventional
Radiologist’s office and leave a voicemail.
My pain meds have some adverse side effects so I avoid
them. In my fifth hour of "toughing it out," Tiff and I are
bikini-clad and headed to the beach. I cave and take a pain pill to make
it through the rest of our fun-filled day. We’re mere moments from the
beach, sand in sight, and I feel too awful to continue. Tiff flips a
U-turn and we're headed to the ER.
When in the ER with cancer, you get one of those blue,
surgical masks to wear. So as I sit in
the ER, still wearing my swimming suit (plus cute cover-up... I wasn't 95% nude
in the waiting room), looking like someone from the SARS epidemic that
never happened, Rene calls back. She informs me these pains are to
be expected and I will have them for up to a year. Ah, yes, sounds
great. So, should we leave? No, stay and be sure everything is
okay. Alright.
My name is finally called, I'm taken back into the abyss,
blood is drawn, and I'm placed in a bed. I'm given an IV and some more of
my pain medication intravenously. It makes me feel icky and I don't
like it but the pain ebbs. I receive my 90th CT scan of the past 4 months. Minutes or hours pass, I'm too drugged to understand time. Around
8pm I'm of the philosophy I'll stay in this hospital room
forever, continue to receive pain meds and live a happy life in the San Diego
Kaiser. The doctor returns to report the
pain I’m experiencing is from the tumors emobilizing or breaking down. The chemo is working. (The next person who
says, "That's great!" is getting punched in the face. Not really but you get my point. I'll agree that it is in fact good news, but
the pain these dissolving tumors are causing me is otherworldly.) We are to pick up a prescription for Percocet at the pharmacy before we leave and I'm going to get some intravenous morphine before they discharge me. I
think these are greatest the things I've heard in my life, shake his hand,
and smile as he leaves me forever. I wonder as the nurse enters shortly there after and takes out my IV but about but I just let it happen. He returns
with some paperswork apologizes, "The doctor ordered some morphine but I
didn't see it. Sorry, I took out your IV too soon." No morphine for
me. Sad face.
As Tiff wheels me down the hall towards the pharmacy, I'm feeling terribly ill. The pain meds are making me nauseas and
incredibly dizzy. When we finally arrive at the car, it's dark outside. I ask Tiff where the time went. Upon arriving at the hotel, I
notice the Percocet bottle reads: contains acetaminophen. I'm not
allowed acetaminophen because it metabolizes in the liver
and clearly my liver is already in distress. My trip to the
ER yielded these results: pain meds that made me
sicker.... a pain script I can't take.... another bill…. an entire day of
my vacation wasted. Double sad face.
Lesson learned from my mistakes: don't travel
immediately after chemo. Who knew? Guess this blonde didn't get the
memo. All was not lost in the end. We still went to the beach and a
Padres game, just 24 hours late. Then we drove to Vegas to say with our third sister, Jenn. Day after ER=success!
This post is dedicated to my sister, Tiffany. Best Sherpa Ever. Thank you will never be enough for hauling around my luggage, taking care of me, and generally ignoring how crazy I am. Also, for putting up with cancer-hieghtened OCD for an AMAZING trip. I love you more than you'll ever know.
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