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.

Lymphoma-sodes: Boy Scout Uniforms & Faith

8/30/2009

What a weekend. PHEW! I’m exhausted, but it is the good kind of exhausted. I’m wishing I could extend the weekend into, oh say forever- is that too much to ask? I’m absolutely, positively, no doubt about it DREADING this week but we’ll discuss that later; back to the weekend…

As I previously posted the brother came home for less than 48 hours, however it was a good visit. In true Aaron fashion he didn’t miss a beat. The scene: Aaron, my mom, and I in the kitchen eating breakfast Saturday morning. I say to Aaron in between bites of my deliciously fantastic organic peanut butter toast (Archer Farms Chunky brand of course), “So what do you think of the bald head?” Without a missing a beat, Aaron looks at me with the grin, the same grin he gets when he’s been waiting to use a line he’s been saving up for the perfect occasion and can barely get out because he thinks he is so funny he’s going to laugh at his line whether we think its funny or not and says, “Kris, nothing compares to you.” I look at him and roll my eyes and start to laugh because for Aaron, his “nothing compares to you” is nothing compares to you as in the Sinead O’Connor song in the 90’s, meaning he thinks I look like Sinead O’Connor. I’m anticipating that I’ll be getting a picture of the Pope for Christmas from the comedian.

It’s amazing how siblings can bond in situations. I don’t think I’ve spent that much time in a car with my brother since I was 10 and he was 6 and we were heading up north for family vacation. Between the trips to donate old treasures, making friends with the fellas at the recycling center, and the numerous trips back to my house and my parents’ house we had some good conversation. (This time though we didn’t have that imaginary line down the middle of the seat with the empty threats of, “If you cross the line I’m tellin’ mom!”)

We made it back to our parents’ house and had less then ten hours to get through his childhood up to college, which had been conveniently packed away into various sizes and colors of the plastic totes everyone uses as their excuse to buy more stuff. As we made progress conversation was filled over and over again with the, “Oh my God! Remember this?” or “No way!” or “I can’t believe I ever wore something like that!” or the ever popular, “I soooo call dibs on…” I was particularly fond of finding my old swimsuits; I can’t believe how many I had as a kid. As I examined them I would hear the cracking of the elastic they were so old and dry. The absolute highlight of the evening was the fact that not only did we find Aaron’s Boy Scout uniform but Aaron, at 28 years old still fits into it. Yep that’s right. It was quite the sight and I have the picture to prove it. We made a lot of headway this weekend. We sorted, donated, and recycled a lot of our childhood. We even managed a great brunch with our two aunts and parents before getting Aaron back on a plane to L.A. And so Monday is tomorrow. *Insert dreaded sigh here* UGH.

So Monday is my last day of freedom before the stem cell transplant process begins. I have testing all week. If emotions were horses at the racetrack I would have to say Anxiety with a touch of Nervous Anticipation would be the frontrunner. Aside from the baldness, normalcy was just beginning to return to my reality and now I get to return to the hospital. What a tease. For me hospital equals smell; icky, gross, sick to my stomach instantly smell. It’s that sterile-dial-soapy, please-God-let-my-test- results-be-good-pit-in-my-stomach-smell. It’s that smell that once I am cured I will never voluntarily smell again. I know everything is going to work out though and I will get through this; it’s the getting through part that is the toughest because no one and I mean no one has the crystal ball and can give me the reassurance that I’m looking for and that’s where faith comes in.

I thank God every day for all that He has blessed me with. I was on the phone with Christel this week and we were discussing this very topic of having faith because it feels like there has just been so much bad in the last year. The question we had was, once the bad happens in life how do you not live in an almost paranoid state, always thinking you have to be prepared, waiting for the next bad thing to happen?

Christel went on to tell me about a quote a coworker of hers had posted on Facebook. I wish I had the quote, but the meaning is what helped me. It was about envisioning seeing fear & anxiety one side and faith on the other (don’t ask me why but I kept envisioning motorcycle handlebars) and making a choice; choosing to continue to allow the fear and anxiety to take hold or grabbing that handlebar and having faith that the Lord is going to see you through this and give you the strength and courage to let go of the fear and anxiety. I’ve grabbed the handlebar on the right, which is faith and I’m holding on tighter than I ever have before.

Christel also gave me a great quote from Ann Landers:

'If I were asked to give what I consider the most useful bit of advice for all of humanity it would be this: Expect trouble as an inevitable part of life and when it comes, hold your head high, look at it squarely in the eye and say, ‘I will be bigger than you. You cannot defeat me.’

Words are powerful and sometimes saying them out loud can give you the courage you need to help with the getting through; its not about the big c, but rather finding faith which will give you the strength and courage to get you through whatever it is that is causing stress.

So this was a long post; hopefully I didn’t get too serious for you! It was a great weekend; I got to hang out with two of my most favorite kiddos, Jilly & Evan (which is a post within itself J), see my brother, and made major headway with getting moved out of my house. Life continues to be good here in limbo but the next chapter begins on Tuesday with a stronger sense of faith and as life continues I will look the big c squarely in the eye and tell it, “I will be bigger then you. You cannot defeat me.”

Lymphoma-sodes: Jolly Ranchers & Lint Rollers

8/24/2009

It is now officially day 4 that I've been home and at midnight tonight I will be one week away from beginning my six week road trip known as stem cell. Life is good here in limbo, at this moment. I must admit though at times you wonder if you're in limbo or stuck in purgatory but then you realize you're still alive so it can't be purgatory and depending on the amount of stool softner you've had in the last 48 hours you might as well be in hell on earth but the moment passes, all be it painful, but it passes none the less.

I should have prefaced the squeamish may not want to read what I have to say because I plan on being pretty blunt throughout this blog. With any medical condition your dignity goes right out the door with life as you know it when you hear the words, "You have cancer." So if you're squeamish, close one eye as you read and think of this as best education experience you'll ever get regarding the big c. (For I hope it is the closest anyone a part of my life every comes to it.)

Today was a good day. I'm finding myself to perk up between the evening hours; maybe its because I've always been a night owl. Jolly Ranchers are my new best friend. I'd like to buy a bunch of the peach ones; I only got two in the bag that I found at the grocery store. I remember when that's all you'd find in those bags. I'm down with the peach, orange, cherry, apple, and the occassional watermelon. Quite frankly if it were up to me I'd like to write to Mr. Jolly Rancher Maker and say,

Dear Mr. Jolly Rancher Maker,

You make a magnificent product. As a person fighting cancer for the last year, I'm wondering if you could come out with a cancer line; you know a little something that allows those of us with chemo cravings to pick and choose our own bag. I would be more then happy to be your guinea pig. Please send all of your peach, orange, cherry, and apple jolly ranchers to the enclosed address.

PS. If you could throw in a few sour ones it'd be greatly appreciated as well. Thanks again for keeping my salivary glands in working order.

PPS. No offense but the Jolly Rancher Smoothies are disgusting; save yourself some marketing dollars and nix those suckers.

Maybe not quite so blunt; I may have to butter them up a little more but you get the gist. I think I'm enjoying the Jolly Rancher cause it keeps my mouth moist, which helps me to avoid the dreaded mouth sores associated with chemo.

I've decided to enjoy this week as much as I can. My brother comes home on Friday (flies in at Midnight in Mnpls; Aaron can I just say you should stick to design and not seek out being a travel agent?). I'm excited to see him and hang out. It will be a good visit.

I've decided to rock my hair as is this time. I refrained from having Jeff shave it on Sunday. Today I've lint rolled my pillow and bed about five times. Can I just say I heart lint rollers? I'm totally in shock at how fast it is falling out. I know I'm done with my two rounds of ICE but I've lost I would say over half of what has grown back since March; it was as though the texture changed overnight literally. It is most noticable by my ears but if you saw me in the grocery store it'd just be one of those double takes where you're thinking, "Did I just see a chick that's balding?" and then you'd go about locating your fig newtons (or peach jolly ranchers).

So I'm off to locate some peach jolly ranchers and try to wake up the pooch who has started a rythmic snoring that I must now interrupt.

Lymphoma-sode: The Update

8/19/2009

An update is in order and to make sure we are all on the same page we'll start at the very beginning.

My original diagnosis was done in Aug/Sept 2008. I was diagnosed with Nodular Sclerosing Lymphoma Cancer, otherwise known as Hodgkin's Disease. The type of Hodgkin's Disease I have also happens to be the most common form found in females *a fact you will store in the archives of your brain and years later not know why you know this information.*

I began six cycles *1 cycle = 2 treatments* of AVBD chemo starting in Sept 2008. After a routine PET Scan was done in Dec 2008 we found the Big C to be completely gone. It was the best Christmas present I could ever have received. I continued with treatment until March 2009. My first follow up scan showed cancerous activity by my original tumor but the doctor assured me that statistically this was normal and most likely the tumor trying to spit out it's last breath of life.

**So here's where I tell you exactly how much I HATE the word statistically. Seriously, I'm not a statistic and my life isn't STATISTICALLY anything. I get that the docs and nurses have to go on something but can I just say telling someone STATISTICALLY something should happen and it doesn't or its anything STATISTICALLY related you should reconsider your choice of words.**

I was given a 12 week repreive from treatment and had my first follow up scan July 24th, 2009, which brings us to the present.

One week before my 32nd birthday I learned the Big C returned. Again I was whisked away for needle biopsies (not so fun cause you have to be awake), PET Scans, CTs, and more needle punctures in my body then I care to remember and one really bitchy nurse whom I choose not to complain about considering one out of how many nurses I've had isn't bad, but still its one bitchy nurse too many as far as I'm concerned.

Moving forward...

The game plan is now two rounds of chemotherapy called ICE chemo. I'm admitted into the hosptial to receive it and it takes 3 days. Once this is complete I will undergo a stem cell transplant, which will start as soon as Aug 31st or the week of Sept 7th. Once stem cell is completed and I've been in recovery for 60 days I will have an additional 4-6 weeks of radiation therapy.

Tomorrow I will have finished round dos of the chemo- WOOT WOOT- that's right I'm tooting my own horn folks and expect more of that to happen. I'll find out more when stem cell transplant begins hopefully within the next week or so.

My eyes are getting tired here looking at my screen and I just took a nice big Xanax and Compazine to help me sleep and keep the nausea at bay (TGID- Thank God for drugs!). I plan on watching a little Roseanne (don't ask me why I like that show I just do but only the early ones not the ones where it got all weird!) and tomorrow is a new day!

Lymphoma-sodes: A Bigger & Better Blog

8/18/2009

So here I am; back in the hosptial getting my second dose of ICE chemo for my "recurrence" of the Big C. I've been meaning to start this blog for some time now but with the recent events of life I find myself exhausted when there finally is time. However, now is the best time as ever though, so here we go. This blog isn't just to keep folks updated; I want to take you all on my adventure with the Big C.

For those who know me well its been no secret that I've always been involved in something creative. Writing is no exception. It is something I went to college for but as life happened and I became busier it was lost in the madness. I'm hoping this blog will get me back to that outlet. Writing has always been something very personal for me; it's not something I've ever shared with others unless I had to but things are different now. My attitude about many things has changed dramatically over the last 12 months....so I invite you to join me on this journey for the ups and the downs, the laughter and the tears, and the many lessons that can be learned along the way. I'm hoping, praying, and wishing for this to be a cure in the end; the end of a chapter in my book of life.

As one of my absolute favorite writers, Garrison Keillor has summed it up best,"It's a shallow life that doesn't give a person a few scars." I believe it's those scars that give us the invaluable life experiences that make us who we are. And so, the blogging begins...