1.23.2012

1.23.2012

Ugh. Mondays. I've felt like my brain has been in a fog for the better part of the day. Maybe it is because the world got off to a two hour delay today thanks to the freezing drizzle we received in the last day and a half. Or it could be I've just had too many thoughts running through my head with an insufficient amount of time to sort through them all. One that I can't stop thinking about is how to stat your life over after your world is consumed by this disease.

Let's state the obvious; the Big C does not come with any type of handbook. There is no guide, living or in print, that will give you any reassurance about the choices you are making nor is there any type of "how to" on resuming life at any stage of the game you might be in. How do I move forward without having to advertise my business to everyone I come into contact with? How did I get here? Let me preface.

When I received my original Dx in 2008 it was all about survival; keeping my body as mine and not allowing the Big C to invade any more of it then it already had. My world collapsed all around me and I went from being able to plan months in advance to day to day. Then came the news the IV chemo failed, bringing on the stem cell transplant, and then the news that it too had failed. Forget living day to day we were down to hour by hour. I gave up a lot in that time. In my mind I had accepted that this was going to be my life. I would not get to return to school. I would not get to live on my own again. I would never get married and I would never get to have children. My sole purpose in this world was survival and by the grace of God I was going to do it for as long as I could. Then in the blink of an eye everything changed. Again.

CRAD-001. The experimental chemo drug that I now take daily to live. Suddenly, not only do I have hair again but guess what? I get to keep it. Before I knew it, the image in the mirror was someone I recognized. Next thing I know I'm enrolled in graduate school.

I keep running into people who know my story and want to know "how I'm doing". On more then one occasion it has been assumed by folks that I'm either "cured" or in the "r-word" (remission but we don't use that word. EVER.) because I have hair and don't look "sick" as per the definition and image in their mind. How do I explain to folks, not only ones that I know but to people I'm newly acquainted with my situation?

Take dating for example. Lets say I meet a nice guy and we hit it off. It isn't like I can sit him down on the third date and say, "We need to talk because I need to tell you something. Don't' worry it isn't an s.t.d., its only cancer and don't worry, you can't catch it." Forget dating. How about just making new friends. It is like having to hide the elephant in the room inside a small clutch purse; it is the number one priority in your life yet you like you are being forced to pretend that it doesn't exist. Do I need to tell folks? Some yes. Some no. I'd like so say, "Yes I have had cancer since 2008. Yes I'm currently on a chemo drug that my body has responded well to over the last year and so far I've been able to keep my hair. Am I considered to be cured? Nope. I take 1omg of chemo every. single. day." Your normal isn't my normal. It has taken me the better part of a year that when brought up I have to just simply say, "I'm LIVING with cancer". That's right. I said it. LIVING. L-I-V-I-N-G. And I plan to do plenty of it.

I feel like I've emancipated myself! The Big C takes it toll on so many levels but it also allows you to experience compassion and humanity in its purest form. Slowly I'm opening my doors and windows again and letting people in. For so long I've felt the need to keep my circle small because it has been all I could do to keep myself going. I'm learning, albeit the hard way most times, on who to say something to and who not. I've experienced others telling my story to folks (a.k.a prospective employers) without asking me first and having those folks in turn confront me about it. This may be a double standard but here's the deal. I may be open about my situation and willing to chat about it but that doesn't give folks the right share it in all instances but guess what? I can't control it all, people will talk and that is just how the world works.

Lesson #177,171 the Big C has taught me: its o.k. to talk about it. Whether it be me or others doing the talking. Maybe there is a reason why there isn't a printed guide to this journey afterall. Until next time...

Lymphoma-sodes: 1st Annual Lymphomathon: Team Tumor Miles

1.22.2012

Once again it is Sunday. It has been unseasonably

warm this winter, with no exception thus far today. However, I hear it is suppose to start freezing rain this afternoon; now there's the Minnesota Winter I know. Life has continued to be well, busy but well. I feel like I've come into 2012 looking through a different lens so to speak. For the first time in my life I decided to make resolutions. Let me preface this that I don't necessarily believe in New Years Resolutions, but as I enter into the three and half year mark of my battle I have come into some new revelations and I'm ready to make some changes and clean house along the way.

Let me begin by prefacing that I have only made two resolutions. You're now thinking, "Oh just two resolutions? That can't be so hard to stick to." Well think again because I think I've picked some pretty tough ones. First and foremost I decided I am going to get healthy. I'm not talking about losing weight to fulfill some traumatic high school experience that would lead me to having a make over on the Maury Povich show, I'm talking about getting healthy. Being overweight is one if the highest and most common risk factors to developing cancer in the body. I've been on a slow roller coaster of weight gain since my late 20's thanks to a variety of factors. Well guess what? I'm done. I've joined a gym and have been working out at least three times per week since the end of December. They say if you can keep it going for more then three weeks you'll make it a part of your routine and guess what? So far so good. I feel so much better when I go and as corny as this sounds, every time I lace up my running shoes and my feet hit the running track in my mind I can see the word cancer chasing me but because I'm there and I'm doing something about it can't catch me. And do you know what? That visualization makes it all worth it.

My second resolution: I'm done fearing my disease. It is no secret that this disease has done a number on me psychologically. Although I've made great strides I've had to accept the fact that my health includes panic attacks (yep they are definitely real) with high levels of anxiety at times. I will never get to a point that I'm not 100% not fearful, but I can be in control of it instead of it being in control of me. Exercise helps greatly with this so that first resolution has come in handy, which brings me to the newest adventure I am putting into motion this spring: the 1st annual Lymphomathon.

I was introduced to the Lymphoma Research Foundation by my doc, who is on their board. I wish I had been made aware of this website from day one. They are an organization that is dedicated to bringing forth information on all types of Lymphoma cancer and researching how to cure them 100% of they time. In fact, they just launched a new website that is solely about Hodgkin Lymphoma. Their annual fundraising walk/run, a.k.a. the lymphomathon (which is non competitive) will be June 2nd, 2012. I am captaining a team, which has been named (drum roll please...) Team Tumor Miles (get it tumor = two more!). Although I only put in a goal of raising $100 I am hoping to raise several times that amount. I'm looking for team members so if you are up to walking around Lake Nokomis June 2nd, let me know! I won't be asking any of my teammates to do any fundraising, I'm taking that responsibility on myself. This is something that I'm very excited to be a part of. I can't tell you how many times I have been told I have the best cancer to get if I'm going to get one. Well guess what? I don't see people lining up to take my place. There is no best cancer to get. What I will say is this, I'm grateful to have a form of this disease that is so highly treatable thanks to organizations and those involved in them like the Lymphoma Research Foundation (LRF). So do me a favor? Lace up those sneakers and come walk with me around beautiful Lake Nokomis and don't be surprised if I hit you up for a donation. Without this research I would not be alive today. I'll see you at the gym!

Shannon O'Hara July 29th, 1998 - January 6th, 2012

Shannon O'Hara (Picture from www.Ohara-family.blogspot.com)

1.7.2012

Today I write with a heavy heart. Cancer is an ugly disease no matter what form of it you have. I have experienced so much since my original diagnosis in the fall of 2008 and have seen a lot of people on Gonda 10. Some faces are returning for new treatments because the last one didn't work while others are new and filled with anxiousness and fear because they aren't sure what is to happen. The worst of it though is when you see a child, knowing he or she is ill never gets easier and it is the ugliest form of this awful disease.

So today I write with a heavy heart but also to give honor to a little girl our community has been following for the past nine months, Shannon O'Hara. Shannon was diagnosed with a brainstem glioma tumor last spring. Her story was broadcast on our local news station and because her family attends the same church as mine, I would hear about how her battle was going, as updates would come from our priest and members of the community. I am sad to report Shannon lost her fight yesterday.

I have never met Shannon nor have I met her family but listening to this little girl I felt a kindred bond with her. Our plights really aren't comparable other then the fact that we both have cancer and can somewhat relate to being told we are incurable. It makes me angry that she and her family have had to endure this awful roller coaster of hell. Absolutely no child should be struck with such a wretched form of this disease nor should any parent have to lose their child as her parents have. As I have felt this anger I am quickly reminded though of how much support comes to you in your hour of need and just how much living you do when you are given a diagnosis of cancer. I have no doubt that the O'Hara family was able to do that with their Shannon.

In the interview done by the local tv crew, Shannon states that she knows her battle isn't all for nothing because her life is going to matter to someone somewhere; whether it be the doctors to learn from or her family. Well dear Shannon, I am here to tell you your life has meant a lot to a many people, including me. Watching your interview and hearing about you makes me want to fight my disease harder then ever and to live life fully. I don't know how long my current chemo med is going to work, but you can bet I will be thinking of you as my inspiration for whatever curves are thrown in my path.

To the O'Hara family I send my sincerest condolences and know that I will be praying for your family. May the Lord keep you and hold you and may you find comfort within Him. To Shannon I say thank you; thank you for your giving us the gift of learning from you about life, love, and faith.

By the way, I had a scan yesterday and all my results were good. Today I am thanking God and praying for the O'Hara's. If you would like to read their family's blog, you may find it at www.ohara-family.blogspot.com.

Shannon O'Hara 1998-2012 Forever in Our Hearts

Adios 2011...

1.2.2012

Today is January 2, 2012. I am alive.

I can't tell you the emotion I feel when I get to write that: I am alive.

I AM alive.

I AM ALIVE!

If I could shout it from the rooftops I would (but as it is January 2nd and winter has finally decided to arrive in Minnesota I think I'll take a big fat pass on that idea) but the sentiment is still there.

This time of year is usually a time of reflection and without a doubt I have been doing my own reflection, privately. It is has been and continues to be a difficult journey because I don't want my life to revolve around my disease but because I have a daily reminder in the form of two chemo pills that I absolutely, under no circumstances can not miss taking, being able to pretend I get to resume a "normal" life just isn't an option for me. It has been a long time coming but I can finally say, "I'm okay with that."

My time of reflection leads back on one path and that is to the Lord. It is truly astounding to me how this journey has given me the gift of Christ in my life. I don't pretend to know a whole lot about the Bible, but what I do know is this: without the Lord I would not be entering into 2012. To Him I simply say, "Thank You; thank you for the gift of your mercy and giving me time."

I am so unbelievably lucky to be here. If you are one that prays, I would ask of you to keep me in those prayers for His continued mercy and love. I begin this year with a scan and as always I am nervous (something I don't think will ever go away).

To my family and friends I thank you for your continued support throughout 2011. To those of you who do not know me but have shown me compassion and support through your ways not only do I thank you but may the Lord bless you as you have shown me what it truly means to be a person of compassion.

Happy 2012!

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