Lymphoma-sodes: Standing Up to Cancer

09.22.2010

I can not believe it is nearly October. What happened to summer? Was there a memo from Mother Nature that I missed that we weren't easing back into this cold stuff? Don't get me wrong I'm not complaining, fall is actually my favorite season of the year, however when it is sprung upon me in the way it has been this year I've got to say it leaves me a bit shell shocked. I admit it; I miss the pool. I had an awful moment this week while I was getting ready for the day. As I was in the shower it dawned on me that it was only going to get colder from here on out. I love the beauty of winter it's the cold that I dislike so much. Enough of the weather (I sound like a newscast that shall remain nameless in southeastern Minnesota that relies on the weather to be their "top" story).

So here we are once again. I had my routine check up to refill my prescription yesterday. I'm going to put this out there. I absolutely love my doc. Dr. Habermann is this man who just oozes wisdom and tact. He is a man a part of a lost profession; a doctor from a time that saw patients as people with families and friends and a life they don't want to give up. I had to confess to him that although I absolutely adore him, every time I see him or even have to go to the tenth floor of the Gonda building all I want to do is run to the bathroom and vomit or let my body do what it needs to in order to cope with the horrific anxiety you have about any and all test results. His reply will give you an inkling as to why I think so highly of this man. His response to me is, "Kristin, quite frankly if you didn't have that reaction is when I would be concerned."

Yesterday was my routine blood draw to check my numbers and refill my wonder pills. My counts were good so I get to keep my reality until at least October 14th, when I'll have my next round of CT scans with results the same day. CT scans are worse then any other test because in my mind they can end everything I've come to appreciate that is around me and took for granted prior to my original diagnosis. It is hard to not let your mind get the best of you and even harder to talk yourself down from the anxiety demon that has taken up residence in the logical part of your brain. That is where the Lord comes into my life. It seems like I'm asking so much of him daily, but I keep asking. And thus far he keeps listening because my blood works comes back good and I feel great. Don't get me wrong; I'm not able to run on very little sleep like I use to be able to but as long as I've had a good nights sleep I'm pretty good to go.

So far things are good; I'm keeping those prayers just a rollin' and if you pray or meditate I ask you not only keep me in those actions but all those others this horrific disease has made itself known to. This month is Cancer awareness month (or maybe October, I can't remember anymore thanks to chemo brain, which is alive and thriving for me and to say it is frustrating is an understatement). It is my hope that one day soon we figure out not just what will cure the Big C in my body but the many others that affect millions out there.

Lymphoma-sodes: And the Beat Goes On

09/05/2010

Once again, time has gotten the best of me. I feel like Dorothy yet again; living in a whirlwind, watching things pass me by and all I'm doing is spinning in circles at a high speed. So to the meat and potatoes we will quickly move forward to...

I last left you knowing that my stem cell transplant had failed and thanks to a lack of bedside manner I was shopping around for a new hospital and doctor to call home. After three failed visits, it was the fourth and final to Dr. Armitage at the University of Nebraska Medical Center that my hope, faith, and determination was restored. With his guidance I am now seeing a new doctor, but still at the Mayo Clinic. Words do not even remotely describe the wonderfulness that is Dr. Habermann. I've learned that I can live with the Big C and better I can move forward. So where've I been moving you ask? LOTS of places.

After finding my new doc, I decided to enroll in a clinical trial for a drug called Everolimus. I take two little pills each morning, smaller then the nail bed on my pinkie finger. My first round I took for sixty days, or two cycles with scans in July to see if it was working. Sure enough, my little pills are doing the trick! Of the five (you got it FIVE) spots they have been watching, two had completely resolved themselves. Finite. Done. Gone. Hasta mañana banana. Great news, right? What's even better is the three remaining spots showed signs of (excuse the Seinfeld reference) shrinkage! So the good news is they're working. I pray every day that the Lord continues to intercede on my behalf and continue to keep these drugs working. They show great promise and I hope it's a promise I get to have fulfilled.

So now what? Life is a gift and I am grateful for every day. I have such a different perspective then I did yesterday and the day before that (and the day before that). I still struggle with the anxiety of going in for scans because for me I know that this, the daily life that is around me that I realize exactly how much I love so dearly, can be taken away from me at any moment. But alas, life moves forward. I have enrolled in my graduate program, a one year journey that will make me a teacher with a Master's level degree. What can I say? I'm in love with it. I'm in my element and am exactly where I am suppose to be; learning how to spread my cancerous joy onto the youth of America! Like I stated, the program is only a year so to say it is intense is an understatement, but each day I go there I experience something that makes me say, "THIS is what it's all about."

So remember, life is too short to not do what you love. If you can dream it, you can achieve it. Until next time....

Much Love,
Kristin

P.S. Yes that's the infamous Gus you see in the pic this time. It is his impersonation of Goose from Top Gun.

Lymphoma-sodes: F.I.M.S.

07.08.2010

Once again I'm left pondering to myself, "Where does the time go?" I am astonished that June is over already and July is here. I'm nearing week fiveish of being on my clinical trial and (knocking on wood with my fingers crossed) so far so good. I won't know for another few weeks if the drug is in fact working, but as far as remembering to take it and how I'm feeling on it all has been well thus far. I'm praying that this continues and that the drug is working. Did I mention how much I like having hair? So July 22nd is the date for the next round of scans. Keep those prayers coming because I know the Lord is listening.

As always my mind has been going a million miles an hour. One subject that keeps creeping up is I've finally figured out what I hate most about the Big C: the dumb things people say to you. It's not the side effects, or the hair loss, or the facing of death. When people find out you have the Big C, it's like walking into Wal-Mart; your IQ level drops twenty points (at a minimum) and you regurgitate something that has given you a clinical diagnosis of F.I.M.S. (more commonly known as Foot in Mouth Syndrome). More often then not I'm left pondering, why do people say things they think are helpful when in reality not only are they not helpful but you are left thinking, "Did they just say that out loud?" or "What in the world does that have to do with me?!?!?"

My top ten list of things NOT to say to someone with the Big C is a work in progress, however somewhere on that list would include, "How are you feeling?" My response to comment number one is usually, "I'm doing well." When I'm really thinking, "You tell me. How do I look like I'm feeling?" and then I grab a tissue to wipe off any sarcasm that might have dripped on my chin off. Same with the second most common statement, "But you look so good!" Really? Forgive me but I didn't know I looked like crap before. There is also my favorite statement when it comes to the loss of your hair which is usually responded to, "Well its JUST hair; it will grow back." Really? Ok fine if its not such a big deal then why don't I see you lining up to shave your head along side me so I don't have to look like an extra in a David Bowie video circa his Ziggy Stardust androgynous phase by myself? Now before I unveil my absolute most common symptom to diagnose yourself with F.I.M.S., please know that I get it one hundred and ninety-nine percent that people have the best intentions and they just don't know what else to say. Sitting on my side of the fence though I'm hoping it will give you, my reader, a different perspective for when you come upon a situation where someone you know has been dealt some unfortunate situation. This brings me to what would be the number one contender that each time it happens to me has left me, yes me, utterly speechless.

It will happen quickly, but I've gotten good at noticing the warning signs. First, its starts with a, "Oh I'm so sorry" and then a "but you're so young". Then out of left field I am listening to someone with the best of intentions tell me about their great-uncle's-cousin's-friend's-roommate's-significant other's- nephew who has kidney/lung/breast/pancreatic or any other form of the Big C that isn't even remotely related to Hodgkin's Disease. Now I get that people are just sharing their story to find a common thread for us to relate to, getting on a same level playing field, however when I respond with the routine, "Oh I'm sorry to hear that" or "wow. isn't that awful?" then a, "and how are they doing now?" my mind is blown when 9.9 time out of 10 the response is, "oh we lost him about a year into his battle." OK UMMMMMMM?? Maybe I'm nuts or am I oblivious to something? Are my glasses not the right prescription? Help me out if I'm missing something but how is your story about the person you know with the cancer I know nothing about dying anywhere even remotely helpful to my situation?

First of all this person you know DIED. How is that suppose to help me stay positive about my fight? Second, just because Joe Blow has a a form of cancer and I have a form of cancer doesn't make us war buddies who can relate to one another. I'm immensely educated when it comes to Lymphoma Cancer as far as Hodgkin's Disease goes; all the other cancers out there-- not so much. It's comparable to say you buying a Honda Accord and someone wanting to talk about how that relates to their recent purchase of a boat.

I'm not sure what the right thing to say is, but I can tell you that life continues to only move forward. And good intentions aside, treating someone as you would've when they weren't sick is probably what I yearn for the most. When we are young we are always taught to strive to be the best; to excel. I'm here to tell you that average is pretty okay in my book because I'd rather excel at being average and live to tell you about why it's pretty awesome to excel at being average then striving for perfection and losing my battle.

Until next time...

*Image can be found at: http://firstfriday.files.wordpress.com/2008/10/average_joes_yellow_shirt2.jpg

Lymphoma-sodes: Weekend Update

06.04.2010

Where does the time go? And why do we always say that? I mean honestly, it's as though when you turn 30 there is a switch that is flipped in our brains and we start saying things only our parents said. I thought that only happened when you had kids, so you can empathize with how bothersome that is to me considering the fact that I do not have children. Seriously, I love my mother to bits and pieces but I have absolutely no desire to be her. None. Zilch. Zip. Nada. I am my own person damn it! Oh wait, this is an update, so here we go. Again. This last month has been yet another whirlwind. I've made many attempts at putting up a new post; even adding the application onto my Iphone (which can I just say is NOT the most user friendly application on my phone, which tells you why I haven't had any recent updates until now).

So as I left off, it was Omaha or bust. Dr. Armitage was beyond anything I could have hoped for. he is a man that will forever be dear to my heart because he has done something for me that no other doctor up until we met had done: he gave me my hope back. And when you're fighting for your life hope is all you got baby.

Rewind.

Dr. Armitage, unlike my former doctor, explained things thoroughly. He was very realistic but always optimistic. He let me know that although Hodgkin's Disease is 90% curable, there is no guarantee that I would ever have been a part of that 90% thus the statistic is misleading. Now I could go on and on about how great he is, but I wouldn't want your eyes to gloss over. He is a man that has been able to get me back on track, continuing my fight. With his guidance I went back to Mayo and am now seeing a doctor just as wonderful as him by the name of Dr. Habermann, who has also restored my faith in doctors. What is fantastic is that we have options folks! Can I just say I love having options? Dr. Armitage put it simply that in my situation there are two extremes: 1. Do nothing; accept that I have cancer and let nature take its course and basically wait to die and 2. Fight with all of my might even it costs me my life in the process. Now here is where I thank God that not everything is black and white. Like life, I'm working with a lot of gray area which in my case includes chemotherapy and clinical trials, which brings us to our plan of attack.

I am now officially a part of a clinical study at Mother Mayo. Everyday I take two small pills, when put side by side are smaller then the memory card for my digital camera. These two little pills are actual chemotherapy otherwise known as an oral chemotherapy agent. Now Dr. Habberman has given me great hope, however he is realistic yet optimistic. The name of the drug is Everolimus. Basically, I take the drug everyday (for an indefinite amount of time at this point) and these two wonderful little pills kill my cancer. Sounds too good to be true doesn't it? I'd be lying if I told you I wasn't nervous but we find out in 8 weeks if they're doing their job. Dr. Habermann has assured me he's got folks on this med that it has put them into remission but he is also very quick to bring me back to reality as there are no guarantees in life. So for now I just hope and pray to the good Lord above that these little pills do what I need them to. The best part is I get to keep my hair! I know right? I can hardly stand it myself! I have a secret to confess; that is one reason why I really want these pills to work. I'll get to keep my hair and live like a normal person. I love, love, LOVE normal. I've been on my medication now for a week and so far I've had little to no side effects. So its understandable why I'm being served up a healthy dose of skepticism.

You always think your life will end when you're told you have cancer and I'm here to tell you it doesn't. Life goes on and guess what? It's wonderful. I don't know how much time I have left, hopefully this drug does what its suppose to and I have twenty or thirty more years, but for the first time in nearly two years I feel like the little black rain cloud that has been stalking my life has lifted and I'm free of its burden. No longer do I dread going in for scans or seeing my doctors. I'm realistic about my situation but I'm also optimistic. Never forget that; you can always be realistic about any situation but no matter how bad you can always be optimistic because like I said before without hope you have nothing.

The summer has just begun and there are adventures at the Farmer's Markets, Twins games, days at the pool, and an abundance of other activities I can't wait to dive into head first.

Copyrighted Image can be found at: http://www.pastemagazine.com/high_gravity/2008/10/snl-weekend-update-thursday-1016-review.html

Lymphoma-sodes: "Toto, I don't think we're in Minnesota anymore."

05.11.2010

And it is off to the races again tonight! I leave this evening with Ruth (my mom) and my uncle Jeff for Omaha, Nebraska to see a Lymphoma specialist by the name of Dr. James Armitage. I have been told he is the best in the business and I'm praying that the Lord is going to bestow the knowledge and wisdom on to him to intercede on my behalf. I'm sure he will recommend a donor stem cell transplant but we will soon find out. It's been such a whirlwind of activity these past two weeks.

I'm feeling good yet; no signs I'm sick other then the PET Scan I had a few weeks back letting us know the Big C had not been killed dead. I had a fabulous weekend with my cousins, Brady and Mason, as well as with my other little nieces and nephews (my best friends' kiddos). I don't know what it is, maybe their innocence of being untouched by the world because they are so young, but I find peace and normalcy when I am with them. Maybe its because I'm the one doing the taking care of things rather then people taking care of me. I don't really care what it is but I feel normal when I'm witht hem. There isn't constant talk of cancer or the "oh-you-look-so-good-though" statements. I just get to be Kristin.

I'm hoping we'll be home by the weekend, armed with information with a decision finalized by Monday. This next round will be a challenge but I rely heavily on my faith in the Lord that he will continue to see me through it. I'm nervous and scared. I'm realistic yet optimistic. I'm a bundle of emotion but I'm working through it.

So until next time (which will be soon with an update of what the plan is...)

Much Love,
Kristin

Lymphoma-sodes: Kristin in Cancerland: The Next Adventure

As I sit here on flight #3987 en route home from my adventures at the Cancer Treatment Center of America in Zion, Illinois I'm feeling joy, gratefulness, most important NORMALCY (amidst the waves of nausea from motion sickness thanks to the wonderful world of turbulence). I wasn't given any news I didn't already know; donor stem cell transplant for round three was their reccommendation. We've got one last second opinion happening next week in Omaha, but as I sit here listening to my Ipod randomly shuffle between Weezer, Pete Yorn (be still my heart), Ryan Adams, and the other three thousand plus songs loaded onto it I am relishing how I am feeling; like an iguana basking in the warm afternoon sun.

Don't be deceived; I still have my fleeting moments where I'm scared to the point that I'd gladly crawl out if my own skin but not tonight.

My adventure in Zion was in a word: Ehhhhh. As I've already stated they didn't tell me anything I didn't already hear from the U or Mayo. Where they were absolutely FABULOUS (which reminds me- man do I miss that show) is in their patient care. You name it, they'll get it accomplished for you. What I loved most about CTCA is that Im not alone. Everywhere I looked I realized just how many people are affected by this awful disease but as awful as this sounds it felt good to know I wasn't alone.

I am learning that life with the Big C doesn't mean it's over. I rode to the airport with a 56 year old man with stage four melanoma. While he was very polite, I couldn't help but notice that in his voice the hope was gone, which saddened me. There is always hope: period.

Now, I am not a Saturday-morning-born-again-Jevoah-Witness-Baptist-Protestant-reformed-Catholic-knocking-at-your-door-converter-of-the-lost-flock if you know what I mean. I am proud of the fact that I am a Christian and even prouder of my relationship with our Lord and I am 110% all about encouraging people to find their own personal relationship with the Lord but I'm definitely not one to push my beliefs onto others. When I heard this gentleman speak I couldn't help but be reminded how temporary this world is for us. As humans we are flawed sinners and we are so caught up in the grieving of our loved ones and/or fearing the unknown we forget to remember that our death in this world should be a celebration of our life here and more importantly of our return home where we truly belong; with our Father in Heaven. I will pray for my car riding companion tonight that he find his hope again.

I will also enjoy tonight and my weekend before checking back into Cancerland next week this time via Omaha, Nebraska with a vist with a Dr. James Armitage who has come highly reccommended. I pray the Lord will intercede on my behalf and heal my body but one day at a time for now; but all filled with hope.

Until next time....
Much Love-
Kristin

Lymphoma-sodes: Round Three

Yep you read that right: round three. In a nutshell my time in hell, otherwise known as the autologous stem cell transplant I did back in September 2009 failed. Saddam (the name of my second tumor) is dead however his cousin (whose name is yet to be determined) has sprouted due north, just above my sternum.

I write to you today from beautiful, sunny Zion, Illinois where I'm being seen for my second, second opinion at The Cancer Treatment Center of America. The first second opinion was last Friday at the University of Minnesota, with a third happening next week in Nebraska.

Once again my life has been tossed into a whirlwind. I asked my doc at Mayo if I was terminal after I was told my options were few. Her answer, "Well, we are all terminal to some extent.". Ok you tell me; what the hell does that mean? And thus the search began for second opinions.

I have thought and rethought about the many things to write about here, especially since the Big C has once again decided to remain a big pain in my ass. The thing is I could tell you how grim my future looks and I could also piss, bitch, and moan about how unfair this is but I refuse to go down that road. I won't lie; it's been a rough couple of weeks but I'll be damned if I will allow Cancer to invade my body AND my life. As far as I'm concerned there is always hope. Without hope you have nothing and nothing is something I don't have.

I'm learning a plethera of lessons about life as I enter round three the first being that I could never thank the Lord enough for giving me the family and friends I have. If love could kill Cancer mine would be dead a million times over.

So with that said I'm now taking suggestions for names of my new tumor (be creative here folks) as I gear up for the next round of fighting. My only request is that when you see me, please remember I'm still the same Kristin I've always been and I'm ALIVE and no need to worry because the Big C isn't contagious. I'm full of life yet and I'll be damned if I'm going down without a fight! Until my next post....much love!

Kristin

Lymphoma-sodes: Change is on the horizon...

4.16.2010

I am a slacker. I have not blogged since January. Do I have any excuse that is anything remotely acceptable? In a nutshell, nope. And with that I offer my sincerest apologies for those of you who have become faithful followers. I promise to try to update more often. In fact, I've had several folks (you know who you are) ask me to update. So here I am. I've also had a few compliments from some folks as well regarding my writing and to you I say, "Thank You! Thank You! Thank You!" It truly tickles me (just on my hands though not my feet; no one touches my feet. It's a personal thing).

Spring is here- PRAISE JESUS! Now anyone that knows me, knows that I'm partially in love with winter. Seriously; no joke. There is simply nothing like a good old fashioned winter storm complete with icy roads, several inches of falling powder, and it being just cold enough that you don't freeze your assets off should you wind up in a ditch somewhere. However, even I grew tired of winter this year. I feel invigorated to see green grass, buds on trees, and knowing that I will now be planning my weekly field trips to the Farmer's Market!

First, the update.... When I left off I had my first set of scans just after Valentine's Day. Although my PET Scan came back PET Negative, they did have to document "notable uptake" in my thymus gland region. Dr. Micallef informed me that this could be:

1. Nothing- which we want more then anything...

2. The Big C rearing it's ugly head once again.. which words can't express how desperate I am to NOT have it be...

3. My body trying to regenerate the thymus gland...which is possible however not common according to Dr. Micallef in someone of my age; apparently its more common in younger patients which makes me think life really is downhill after thirty.

So off to the biopsy lab I went the next day for an ultrasound to see if there was a tumor that needed to be biopsied. Thankfully they found nothing, which meant it became a waiting game with my next scans happening next Wednesday (4.21.2010). Nervous doesn't begin to describe the anxiety I've been having. There are just not words to express the desperation I feel for wanting to just be Kristin again and not having the Big C be any part of my life but rather a chapter that's closed in the book of my life. With that said, any extra prayers you've got and positive energy please keep sending it my way.

With spring in the air I feel excited about life these days. There is just something about the spring time. Its similar to when school starts and you get to buy new notebooks, pencils, folders...need I go on? What can I say? The man that I will fall in love with someday will find this weakness of mine and win my heart with a bouquet of freshly sharpened pencils! (Maybe it's the teacher in me).

I will of course keep everyone posted on my scans next week and I'll be updating again soon, with soon being before April is over and not the first week in August!

Lymphoma-sodes: Pop! Goes the Weasel

1.18.2010

So here we are, more then halfway through January of the new year and once again I'm wondering where the time has gone. Since I'm not allowed to work for another month I'm starting to get a little antsy. I am definitely not ready to jump back into full time work but this not working at all business is for the birds as far as I'm concerned.

As I was saying, it's a new year. Usually as January first approaches so do the ideas of resolutions; not for this girl. I was never really a resolution maker per say. This year however is different (kind of). Since becoming ill nearly two years ago, my life changed in every way imaginable. Now before I continue here this is not some, "oh-my-God-I've-seen-the-light-and-must-spread-the-word-Oprah-Ah-Ha!-moment". So let me continue...

So as I was saying, I'm not a resolution maker and my life has changed. Before I received my original diagnosis, I had already given up pop, soda, whatever you want to call it. I stayed on the wagon for several reasons and for nearly a year. Things changed with my stem cell transplant. I had such intense cravings after that procedure that ever since all I want is Diet Mountain Dew. Now I'm not advocating what is anyone else should or should not do, I just know that it isn't good for me. And considering pop, especially the diet kind is full of aspartame someone like myself with a genetic predisposition to growing a cancerous tumor needs to stay far, far away from the junk. This is easier said then done because you have no idea just how intense the cravings were. My taste buds have changed so many different times it has been comical to see what I will or won't eat or drink. With determination I started to abstain on 1.1.2010. I was going to be done with soda once again; no ifs, ands, or buts about it. There was no way I was going to let a twelve ounce aluminum can that could only be compared to the sweet nectar of the Gods control me.

I didn't even last a half a day...

I caved. What is it about this sweet treat with zero calories that has me hypnotized? I was entranced. I tried the flavored waters, the Izzie carbonated fruit juices (which I love as well) but how do I put this? It's just not the same. There is nothing like taking a cold can of your favorite soda out of the fridge and feeling the smooth, coolness of the aluminum beneath your fingers or that sound it makes as you crack the can open and watch the few drops fly either on your shirt or over your head as it is cracked open. Then it hits your lips and there is that refreshing, familiar taste and the feeling of the carbonation as it hits the back of your throat that nothing else can compare to no matter how hard you try. I heart pop; canned, fountain, bottled; you name it I simply can not get enough...until now.

Instead of a resolution I decided it was just simply enough. I'm thirty two years old and I've survived cancer and I'm done abusing my body (well for the most part). My goal is to give up pop again and I will do it. I am armed with my Sigg bottles (I have this thing about plastic which will have to be another post but in a nutshell I think plastic will be the death of our world) filled with filtered water and chilling nicely in the fridge so the next time I get the urge I can reach for that instead. I will still most likely have a can of my delicious liquid treat from time to time but that's ok. Life is much more enjoyable in moderation.