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.

Lymphoma-sodes: Christmas, Christmas Time is Here, Time for Joy...

12/23/2009- Merry Christmas! Although by the looks of the storm that's moved in I'm thinking Christmas might get canceled this year. I'm ashamed I've taken this long to post again. What can I say? I was living life instead of being holed up in front of a computer screen and let me tell you living life has been FANTASTIC!

Let's see. Since we've got a lot of catching up to I'll keep it brief. My last post was done after just completing my stem cell transplant (09/29/2009, my new birthday). I am happy to report it was a complete success! Shortly before Thanksgiving I underwent a series of scans and I'm officially PET Negative. Translation: I am cancer free! Hang on though, there is a, "but". With the scans they did find two spots within my chest that looked like potential trouble. Since the Big C decided to make a return appearance the last time the doctors felt it was best for me to complete a course of radiation with the hopes that the radiation would essentially be beating a dead horse so to speak. I did radiation for two weeks, Monday through Friday experiencing only mild side effects. I will have my next round of scans in February. If at that time things are still looking good (which I continue to pray for) I will have check ups one time every 12 weeks until further notice.

Recovery from my stem cell transplant was beyond hell; there is just no other way to put it. Your entire immune system is wiped out completely, which means all of your cells are wiped out along with it and you wait for your body to regenerate itself. I wasn't allowed to be alone for 21 days post transplant because even something as small as a low grade fever could cause severe complications including death. This is where it gets entertaining though. The original plan was to get through transplant and then Ruth (my mom whom I've referred to by name since I was a teenager) would be home with me three days a week and other folks would come for the other two. You'd think we could've managed to get that part to go according to plan, but in a nutshell: not so much.

Just after completing transplant Ruth decided the deck needed to be swept. As many of you know we have a tiered deck and when she went down on to the lower tier her knee gave out which caused her to dislocate all of her toes and break her leg just above the ankle, and so the circus commenced.

The decision to move back home once we learned I'd have to run another course of treatment was made shortly before starting chemo in August (the goal was to have everything completed by the time I entered the hospital for transplant.) Being home helped however because Ruth was considered M.I.A. we were left to scramble to get the hours my Dad couldn't cover. Now I have to pause here because its one thing to swallow your pride and admit you need help when you're as independent as I am and it's another thing to move home at 32 years old, both of which I did. However neither of those compare to having to call upon family and friends and ask them to come babysit you at 32 years old. To say I'm blessed is such an understatement. I had such a tremendous group between my family and friends that finding care for those first three weeks was no problem. Between people taking time to cover and others bringing food so we wouldn't have to worry about meals, the outpouring of support was just tremendous.

We made it through recovery and as each day came I was able to do a little more. Never in my life have I been so challenged by my body. I can't even begin to put into words what its like to not be able to be in control. For example, you know you have to eat but you physically can't. At one point I couldn't even eat an individual size serving of yogurt because it was just too much. I remember complaining that I felt I was climbing Mount Everest without proper supplies. As I said before recovery was beyond hell but it was worth it because I'm PET Negative. I was willing to do anything to be cured and I told the doctors, "Do what you've got to do. If you can cure me by parading me naked in front of all of China, book the flight. I can be on the next plane cause I won't need to take anything with me."

I'm officially 13 weeks post transplant now and feeling good. Christmas comes this year with the best gift of all: the future, because I've still got one. With the new year I'll be starting a new normal. I've applied to a one year program for graduate school, hopefully giving me to fulfill a long time dream, enabling me to pursue a gig to teach at a school near you! The Big C: Round Dos has really put things into perspective and I continue to be grateful for each and every day.

With that said, things are looking up. I hope you and yours all have a wonderful (and safe) Christmas this year. Here's to a HEALTHY 2010 and beyond!

Much Love-

Kristin (& Gus)

Lymphoma-sodes: "Are you there God? It's me, Kristin."

09/21/2009

It is exactly 11:59pm. it is the first night in six that I am not connected to a bag of fluid for flushing or desecration of said tumor, Saddam. I understand this journey we take called life is not one that is easy. I was reminded this week just how hard that journey can be but then as I hit that wall, the one where you feel like you just can't look around to see what is on the other side because the thought of anything more is just beyond unbearable, I was also reminded about the lessons we learn from it and reiterated that I'm not in control; someone else is taking care of me.

Now before you roll your eyes at me and think, "Oh boy here she goes on a bible-banging, Mother Mary, Praise Jesus, why haven't you gone to church rant" hold your thought. Lets start where we always do, the beginning...

I was admitted this last Wednesday to begin stem cell transplant. Six days of chemo, with the middle four requiring two daily doses twelve hours a part in three hour increments at a time. Day one and two went well; not my favorite past time but still was in good spirits. Day three was a different story. Day three was the beginning of my adventure into what I envision a lot of what Hell might be like; nausea, loss of appetite, loss of sleep, constantly having to pee. Did I mention stem cell is such a serious transplant process you can't use simple things like your toothbrush and toothpaste because it could cause micro abrasions which are an open source of infection? My whole life was turned upside down by day three. Although I was remaining in good spirits I was fast approaching hitting my wall.

I was blessed enough though to have some visitors. St. John's, the church I belong to has volunteers come up to visit those parishioners in hospital. I've had wonderful visits with Father John, Lorraine, and a few others. I'm not sure which day this was but I was sitting in my bed wondering how I was going to eat the limp toast room service was kind enough to deliver to me nearly an hour after I ordered it and keep it down when I looked up to see not just any volunteer from church this day, but here was Mr. Grosso, my high school Latin teacher eager to visit. I can't tell you how nice it is to have visitors when you're going through this whether they be strangers, current friends, family, or folks from your past but to have someone who knew you as a kid and has kept tabs on you intermittently over the years come to visit; it was the best visit this round of the Big C.

We had a wonderful visit in which I relayed to him my positive outlook on this disease. Anyone who knows me knows this is a just a part of my journey here for whatever reason (we don't always need to know) and I'm going to beat it and I'll do it telling as many jokes as I can along the way (sometimes appropriate, sometimes not so much). The Big C doesn't define me and is most certainly not my legacy. We also talked about God, the Church, what I wanted to be when I grew up and how what role I felt God had in it. My visit with Mr. Grosso taught me to take a different perspective from my experience and see that light (no not the bright light) but rather the enlightenment of God and the lessons He is trying to bestow on us. Sometimes it can take years to find that enlightenment and that's ok. I've learned that as I'm hitting that wall physically or mentally I am blessed enough to have a foundation to know that I'm being taken care of even if I can't see it. And the Lord will always get you back on the path you belong if you let him.

So with that said as you can tell this wasn't a rant; rather it was one person relaying how they feel can see the presence of God in their life. Please pray the transplant process goes smoothly and cures my disease because as hard as it is I'm asking for help on this one because I'm ready to be BIG C FREE!

Lymphoma-sodes: Let the harvesting commence!

09/09/09

Here I am, once again at the Gonda 10 (for those not familiar with the Mayo Clinic that's the Gonda building, tenth floor). This time I'm on the apheresis unit getting my stem cells harvested. I get first class treatment with my hospital bed and warm blankets, however I'm sharing this station with three other patients (envision a room of four folks, each in their own bed with a person in dressed in normal clothes in a chair one side of them, then all kinds of hosptial-y machines: tubes, ivs, blood pressure cuffs, and the rest of the standard medical miracle machines used to save lives).

I'm sitting up in my bed with my laptop trying not to itch the hell out of my chest. Apparently I'm allergic to the adhesive on the bandages used to cover the closure of my old & new ports (removed and installed yesterday). In the last 24 hours I've actually developed blisters where the adhesive was and man oh man do they itch like the pox (as in chicken). On a lighter note, I'm refusing to eat or drink anything before or during my harveting session for two simple words: bed pan (or in this case bucket with a handle). Yep that's right this girl doesn't do the bedside elimination. Did I mention the only thing separating me and the guy next to me is a curtain? You can bet the farm it isn't going to happen. I will let it come out my ears before I go in one of those things. *Insert shuddering and dry heaving here*

On a yet another different note, the surrealism I'm experiencing watching my blood being taken out of my body through tubes and put back in is indescribable. In fact, I've never been one to be squeamish about blood but looking at my own has changed this fact about me. I'm avoiding looking to my left where the machine and all my blood is because quite frankly it grosses me out.

This last week life has been similar to that of the movie the Wizard of Oz; only I've been caught at the part where the tornado hits and Dorothy and the house are in the air spinning in circles. To say last week was exhausting is to say that the collapse of the I-35 bridge in Minneapolis was a minor traffic accident. You're probably confused so I will rewind...

The final week of August I underwent every kind of test imaginable to ensure my body was equipped to handle the stem cell transplant. Heart, kidneys, lungs, blood- you name it and it was tested. I also underwent another PET Scan to see where the tumor was at. Can I just say how much getting poked, prodded, and smushed by strangers among other things sucks? I swore if I was going to have to pee into another cup or have one more person joke about what a hard stick I was, somebody was going to get it. It was a week of being at the Clinic by 7am and not home before 4 and 5pm; it was my full time job and beyond exhausting.

The good news is all came back good- the tumor has shrunk (again) WOOT WOOT! It's about half the size it was going into round two. The even better news though is (drum roll please) the doctors confirmed that it is still the original tumor, meaning my body isn't regrowing them like an overly moist lawn sprouts little crops of mushrooms. I can't begin to tell you what a relief this was for me. Having absolutely no control over what your own body does and then not being able to stop it is a whole new definition of helplessness I wouldn't wish upon my worst enemy.

So here we are back at Gonda 10. I'm hooked up to the machine that harvests my stem cells; something that might look like what I'd imagine a time machine might look like with all of its dials and monitors. My stem cell goal is to collect 5,000,000- yep that's right- five million. My caregivers are confident with where we are at going into transplant which has renewed my hope. And as we all know, hope is a good thing as Martha would say.