Chemo Mom

Something new.

2011-11-06T13:44:00.000-08:00

I've had an idea rolling around in my brain for a bit, but didn't have the confidence to try and see it through. I decided to just go for it.

www.MamaFoxMadeIt.com

It's still a work in progress (if you have feedback PLEASE feel free to share). It's very imperfect, but it's mine. As I build my stockpile of products I'll add pictures and options etc. As a Grand Opening special I'll customize any product for no additional charge.

About.Me

2011-09-14T01:58:00.000-07:00

Check out my about.me profile!

I am just getting started as a Bzzzz Agent. With them I have the opportunity to try and review products and services. Sometimes they're free or discounted.

Last week I signed up with about.me This free service is great. Consider it your super cute e-business/contact card. You control what online presences are linked and they do all the work of making it look great. Feel free to visit mine for an example. Also make sure to explore all the possibilities.

Trying to catch up.

2011-09-09T21:35:00.000-07:00

So, obviously I've been really bad about keeping the blog updated. Summer was a whirlwind. I can't believe it's over. Well, the weather isn't. The summer weather is just getting started here in Portland...so, we should have at least three more "hot" days before going back to our typical mild and rainy weather.

Medically things are more or less the same. Still missing a couple feet of small and large intestine, a gallbladder, uterus, ovaries, cervix etc...still finished with chemo (hooray). I've been working on getting my annual colonoscopy done since may...(don't EVEN get me started) and it's FINALLY happening on the 20th. *eye roll* Colonoscopy, endoscopy and capsule swallow study. The authorization process was finally "expedited" by an incisional hernia that needs repair, but my surgeon doesn't want to do that until we know I don't have anything growing in my colon again...yet. So, we're doing testing, then hernia repair. While I wait for testing and another (this is number three for the past year) abdominal surgery, I have my very first case of shingles. I have heard stories over the years about how miserable they are, and yep they're all true. Nerve pain is not my friend. If I've learned anything over the past year, that's it. Nerve pain ROTS. Thank God for decent pain meds.

So, if you caught the abdominal surgery reference, in the last paragraph, and you're wondering why on earth a hernia repair wouldn't just be laparascopic...well, it's because I'm a freak of nature. Basically, it's a huge hernia (apparently they really meant that I should follow all those post op rules about lifting stuff etc) and as long as y surgeon has a arson to go in there and take a peek, he's going to take it. The small intestine is like a huge blind spot in the human anatomy. There really aren't any great ways to see inside it, and despite it's name it is quite big. The fact that I've had advanced cancer there is going to make any doctor uneasy, because there's not a great standard of care when it comes to surveillance, and small intestine cancer is quite deadly. So, we're taking the hands on approach and cutting my guts open any time we have a reason to. Yay me. Abdominal surgery is super painless and really easy to heal from, and also makes for a great set of abs...NOT. Yeah, I'd like to think that would have sounded funnier out loud, but let's face it. It totally would have flopped with that delivery as well. Oh well.

So...other than the misery of shingles and a colonoscopy, endoscopy, and another surgery on the horizon things have been pretty quiet. *snort* Port flushes every month and so on. Pretty boring stuff.

The mister just had his one year spinal surgery follow up. His films looked great and he's been cleared for full activity. YAY! While his back will never be the same, it's about as good as it's gonna get. So, there's that.

The boys just started the new school year. I'll try and get that post and pics up on the family blog soon...ish.

ALWAYS HOPE: The Eugene, Oregon RFL Speech.

2011-09-09T19:26:00.000-07:00

We all have stories. The story of how we came to be here. Here at Relay For Life. Here, at this point in our lives. Here, to support others in a similar place. Here, to work toward a cure. Here, to share our hope. Maybe you are, or have, personally fought cancer. Maybe you’re a spouse, sibling, caregiver, friend or parent of a cancer warrior. Maybe you’re grieving and remembering a loved one who fought. I’m no different. There’s a story that leads me here, to this place. I’m here today to share that story with you. My goal is that you will take something positive away from it, that you will be encouraged and have a renewed sense of hope.

My story isn’t just my own. Like so many of us, my story involves many other people. My family, friends, nurses and doctors have all been such a big part of my journey. Many in my family have their own cancer journeys, so my personal medical struggles aren’t the beginning of my cancer story. I was in high school when I found out my biological father had cancer. I wasn’t raised by him and had no memory of him. I really didn’t understand why this was a significant piece of information for my parents and I to have. I was quite emotional about it, though. I had no idea why or what I was even feeling. It’s just as likely that it was a teenage hormonal response, as it is that I was genuinely responding to the issue at hand. Contrary to my belief at the time, I survived. My life went on, just as it had before. I graduated from high school, went to college, a few times, actually (just for good measure), got jobs, worked, found love, married a Coastie, saw ships off, waited for ships to come home, had babies and hoped for the day my military man would retire and rejoin the civilian world.

My husband, Brandon, and I had our first baby in September of 2000, a sweet baby girl. She was very beautiful and rarely unhappy. We named her Hadley and loved her more than we could ever express. In fact, we were so in love with her, and being parents, that we had another baby in January of 2002. Just 16 months younger than his sister, Keegan was born trying to accomplish every skill she had mastered. He always seemed to be older than he was. He loved animals, dinosaurs and his family. In November of 2003 we welcomed Liam, or as we so often called him, Baby Liam. He was a sweet little guy. Easy going, happy, and the cutest little orangutan baby you’ve ever seen. Our home was busy, rarely quiet, rarely without toys on the floor or a diaper that needed changing, but we were happy and full of love for these three little people we’d been blessed with. This is where the easy part of my story ends.

In April of 2004 our Hadley Bug, now three and a half, was diagnosed with a very large brain tumor. It was traumatic and shocking and the scariest thing we’d ever faced. We had a three year old in ICU, a two year old, and a five month old. I’ll tell you one thing. The thought that something like this could happen NEVER crosses your mind when you are making the choice to have three children in 36 months. Not. ONCE. It did happen, though. So, we did what we had to do. We fought like we’d never fought before. We met with doctors, set up surgeries, started meds, endured therapy…you know the routine. Hadley’s care, like all cancer patients, was choreographed to the second. In six months time our 3 year old spent approximately 26 hours in the operating room alone. You all know how time consuming the rest of treatment is. Our lives were definitely in a state of organized chaos. It seemed as though every system in her little body was affected, anything that wasn’t was watched closely, just in case. Each system and body function comes with it’s very own medical specialist. Amidst all this chaos, we started to learn to balance worry, survival and panic with making memories, enjoying life, and hoping…just in case that worst-case scenario became our reality.

In 2005 my biological father re-entered my life. It’s a short story. I was able to meet him. He was in the hospital. The doctors had told him he wouldn’t be going home this time. He’d been battling for his life for 12 years. Our visit was very short. He was medicated and declining. That evening he slipped into a coma. A few days later, he died. It was the first time I’d watched anyone die. I spent a lot of time hoping that nobody else I knew or loved would face that same fate, especially my Hadley bug.

In 2008, four years, countless MRIs, physician visits, ER time, hospitalizations, 2 neurosurgeries, 5 central lines, PT, OT, special education, and 6 chemo failures after my sweet Hadley was diagnosed with a brain tumor…her team of doctors, my husband, and I decided to end treatment. In reality, though, it wasn’t much of a decision. We were out of options. Our Hadley Bug was dying. The worst-case scenario had, in fact, become our reality. In September of 2008 Hadley entered hospice care, had a wish granted by Make-A-Wish, and turned 8. On December 12^th, 2008 she died. I wish it were as simple as I’ve just made it. Of course, it’s not. It never is. It is ridiculously hard and messy. Brandon, the boys and I, along with our entire family, our friends and community are still grieving. Hadley’s larger than life personality, amazing joy and pure love of people left a huge absence in our hearts and lives. I hope that her memory will be kept alive, that nobody will ever forget how amazing she was…and that her memory will help others.

Hadley had been gone almost exactly a year when I had surgery to repair a torn meniscus. That year was a hard one. I felt like crud for most of it, but my doctors and I assumed it was depression, grief, lack of sleep, poor nutrition…all typical issues in the early days of grief. My knee surgery was the beginning of a long string of health issues that were clearly separate from my grief, though. In July 2010, a large mass was found in my transverse colon. In laparoscopic surgery, a few weeks later, an issue with the dye used to mark the surgical area lead to the discovery of an extremely rare, and fairly advanced, small intestine cancer. I came out of general anesthesia expecting a few tiny incisions to find 25 staples in my abdomen. I knew this couldn’t be good. Fortunately, the diseased sections of my small and large intestine were removed entirely. Unfortunately, the cancer had already spread to most of the surrounding lymph nodes. I started chemotherapy a month later. This time the process wasn’t so foreign and was much less of a shock. Also on our side was the fact that our boys were now almost 7 and 9, rather than an infant and a two year old. Long story short, I really didn’t enjoy most of that experience, but really hoped that it would all be worth it, in the end.

A meeting with a genetic oncologist helped answer my question of “why”. A genetic defect my doctors presume came from my father, was to blame for at least 8 cancer cases in our family, including mine, and quite likely Hadley’s as well. I have an MSH2 deletion, which falls under the Lynch Syndrome Diagnosis. While it was calming to have some of the randomness removed from my story, it was heartbreaking to realize that my faulty DNA was responsible for the suffering and death of my baby. Worse yet is the reality that my two sons each have an independent 50% chance of inheriting that same faulty DNA. We are currently in the process of having them tested. We hope, obviously, that they have my husband’s reliable DNA instead of my wacky DNA.

With FOLFOX6 behind me, and a bleak survival rate ahead of me, I stand here, wondering what on earth I could possibly say to encourage and empower all of you. To be quite honest I was very intimidated at the thought of speaking to a group of such amazing people. A group of warriors, and those who love them, certainly don’t need to hear anything from me, I mean, you folks are amazing. We hear it all the time, don’t we? Almost as if it’s a justification for or reasoning behind why we were specifically chosen to fight this fight. Then, it hit me. The one thing I struggle to communicate to people around me: I am just like every other human. I am just a person. None of us were prepared for this. We have the same every day issues most people do. Our kids get colds and flu bugs, our spouses have to work and sometimes travel, no matter how much we need them and, at least in my case, the dog likes to eat at least 3 pair of shoes a week. We have all of this AND cancer. An extraordinary burden placed on ordinary people and their loved ones. We feel broken and defeated and scared too. So, what sets us apart? What gets us through? How, do we face death, and almost scarier than death, life with cancer?

Hope was one of Hadley’s favorite words. It was one of the first words she could spell from memory. She had a shirt from St Jude that she loved to wear. When she would tell people about it she would say “Hope period. H-O-P-E period!”. My sweet bug had it right. Hope is what gets us through. Not just hoping during the good times…but hope period. ALWAYS hoping for something.

We all have hope. Our hopes are different from person to person, and from season to season. There are times in our stories that we hope the testing rules out cancer instead of diagnosing it. Then we might hope that we are strong enough to get out of bed in the morning. Maybe we hope for a port to flush properly, or for our kids not to see us sick, again. We all hope treatment is successful, and the cancer won’t return. Some of us have hoped that we, or a loved one, would have a painless and peaceful death. Whatever your hope, you do have at least one. Identify it. Work toward it. Keep working toward it. If a time comes when your hopes change, that’s ok, change your course and keep on moving. Nobody ever made a rule that your hopes can never change. You do not fail when you change what you hope for. Whatever your circumstance, find something to hope for and make that the focus of your life.

At the end of Hadley’s life she told almost everyone she was going to heaven. She knew exactly what heaven would be like. I had worried, early on, that I wouldn’t be able to answer her questions about the afterlife. She had so much hope that what she hoped for became her reality. In her mind a Coast Guard helicopter would come and take her to heaven. There would be a 24 hour McDonald’s, lots of babies to hold, play with and rock. She would ride everywhere in a school bus, swim as much as she wanted and she would be a teenager and best friends with Miley Cyrus. Her hope for these things gave her peace. She was completely unafraid because she was so hopeful. She smiled, her crooked little smile right up until she stepped in to her helicopter.

Right now, I hope for a cure. In my mind it’s what WILL be. I know my hopes may change eventually. That’s ok. For now, I hope I’m cured and I hope I remain that way. I hope to see my boys graduate, get married and fall in love with their babies. I hope to enjoy retirement with my husband and grow old with him. I hope that this is just part of our story. I hope that we carry the lessons we’re learning with us to enrich the other seasons of our lives.

Things never go so well that one should have no fear, and never so ill that one should have no hope. ~Turkish Proverb~

In other words have just enough fear to remain grounded, appreciative and to live as though you’re surrounded by miracles…and ALWAYS have hope. Things are never, ever

A Birthday Gift...

2011-09-09T19:01:00.000-07:00

World Vision Donations: Gift Catalog

http://www.worldvision.org/content.nsf/about/why-donate?open&lpos=top_drp_AboutUs_Accountability

This year we 'adopted' an 11 year old girl from Kenya for Hadley's 11th birthday. Her name is Moraa and her parents struggle to provide food and other basic necessities. Hadley loved people and would definitely like the idea of giving HOPE to children in a very tangible way and I can't bear the thought of a child dying needlessly. So, in honor of Hadley, we are making a very small change in the world, but a big change in Moraa's world.

If you (mostly family) would like to honor Hadley for her birthday I encourage you to check out this page. You don't have to sponsor a child monthly to give. There are options for one time donations too. For example, you can provide 2 living chickens for a one time $25 donation, or $385 worth of lifesaving medicines for a one time $35 donation!!!

Happy Birthday Hadley Bug. We miss you, love you, and hope you are proud of the HOPE we are trying to keep alive for you! ♥

If you do decide to make a gift, please share here so we can see the great things happening in memory of our girl! ♥

The Baker Lady ditches gluten.

2011-06-13T19:20:00.000-07:00

This past week I had the honor of making my cousin and her best friend's high school graduation cake. It was my first, oh my gosh...how am I supposed to continue to be the baker lady AND be gluten free? As always, I found a way.

I'll admit to a little sticker shock after hitting New Season's for supplies, but it wasn't too bad considering the treat. I used a recipe on allrecipes.com. Gluten Free Yellow Cake. It is delightful. I wouldn't lie. Not about cake. It was also very simple to make. I only made one tier gluten free, so the other's were traditional cake recipes. I'm happy to report that even gluten free folks enjoyed it, though.

Xantham gum is expensive, but essential. Or so I'm told. I had good luck with the cake, so I'll stick to it. My next adventure will be bread. I'll let you all know how it goes.

Relaying For Life.

2011-06-13T13:56:00.000-07:00

I mentioned previously that I will be participating in and guest speaking at RFL Eugene. Here is my link: http://main.acsevents.org/goto/mamafox

So far, so good.

2011-06-05T21:55:00.000-07:00

Today was day three gluten free. I even survived my first BBQ! So far it's been great! I have plenty of options to choose from and haven't been hungry once. I'm feeling great and am cautiously optimistic that this could be the key to a lot of my issues.

Tomorrow I am rewarding myself with a manual corn tortilla press. I've really enjoyed white corn tortillas, but buying them fresh with no preservatives adds up. I think they'll taste great and will be much more cost effective. Corn tortillas are SO easy to make, it just doesn't make sense not to do it. I'm pretty excited. Yeah, I may be old and nerdy.

So, some of my favorite things to eat so far have been:

homemade avocado and cucumber rolls with tamari and wasabi.

Snyder's Gluten Free Pretzels and cheese.

More to come...

NOT leaving well enough alone...

2011-06-03T23:44:00.000-07:00

That's right. This mama is NOT going to leave well enough alone. While I am feeling a LOT better than I have in a long time, I feel like there is still something 'off' and am not completely happy with my level of health. There are a number of symptoms that are really bothering me and I think I have found their cause. Gluten. I am not trying to jump on the bandwagon of a fad diet here. This is a medical issue that I'm trying to correct. So, this Mama is ditching the gluten.

Today was my first day g-free (almost). It went much better than I expected. I did not feel deprived or hungry...or awful, except for a little issue with a Luna bar (not g-free) that caused some blech this evening. I feel quite great, actually.

Today's Menu:

Coffee with Vanilla coffeemate
Luna bar (not Gluten free)

Snyder's Gluten free Pretzels and colby jack cheese
Rice cake with natural peanut butter

Banana Chips

White corn toritilla quesadilla with colby jack
frozen chocolate banana for dessert (mmmmmm)

Two Things.

2011-05-19T13:16:00.000-07:00

First and foremost, my CT scan showed NO EVIDENCE of metastatic disease in the liver. Huzzah!!!

Second, PLEASE check out this link! Share this link. Save this link in your favorites. The awareness of genetic colon and other genetic cancers is still SO low. Please use and share this. It very well could save a life.

...anything over 5% warrants serious discussion with one's physician.
Lynch Syndrome International

http://dana-farber.prod.dfcidev.org/pat/cancer/gastrointestinal/crc-calculator/default.asp

3 am

2011-05-11T04:00:00.001-07:00

It's 3am. My family is asleep. I'm not. I reached the end of the laundry, used all the energy in I had in cityville, and couldn't find anything else to do, well, not without waking the family. I haven't been sleeping well. Mother's day is hard, my shoulder hurts, I still have minor discomfort from surgery...I don't know...none of those things feel that big. I just can't sleep. I figure maybe I can 'talk' myself through it here. So, I have a CT scan on Tuesday morning. Some of my bloodwork came back abnormal. None of it was emergency abnormal, but the combination of the three tests that were, can indicate a recurrence, and even more worrisome, liver cancer. As poor as the prognosis is for small intestine cancer, liver cancer is much, much worse. Statistics show a less than 5% chance of 5 year survival. Most treatments are considered palliative, not curative. I know that I am not the only mom who's had health issues. I know a lit of mom's have died and left behind young children. I try not to wallow, but sometimes I just wonder when it's going to stop. When are the pain and worry going to end? What would it do to my husband and sons to lose Hadley and then me? Will my guys continue to beat odds and thrive? Will my boys stay healthy, or have they inherited my genetic mutation and be submitted to a lifetime of cancer risk and screening, at best? I think about that dreaded 5 year mark. The same one I dreaded for Hadley. I learned to both fear it and anticipate it. I figured if we could just make it to 5 year survival she could finally be a good statistic. She almost made it...now I wonder if I will. July 2015. Keegan will be 13. Liam 11. Brandon will be 36 and will have almost exactly 4 years left in the Coast Guard. He'll likely be starting his 'twilight' tour. This is the time we've looked forward to...planned for...buying a home, putting down roots, living the dream, working 'regular' jobs. I'm sure the boys will be totally embarrassed of us and we'll ruin their lives on a daily, if not hourly, basis. If The Mister has his way they'll both be in love with football and eating us out of house and home. We'll all still be missing our girl, but hopefully she and the joy she brought to our lives will be closer to the surface than the pain by then. I wonder if Keegan will still love animals and dinosaurs. Will Liam still be as picky about his fashion statement as he is now? I hope I am there...I want it so badly. I don't want to leave them. I don't want them to ever, ever wonder if I'm proud, or forget my voice telling them I love them no matter what. I don't want my husband to struggle as a young widower...it's just too much. They've already survived too much. The boys haven't been tested for Turcot Syndrome yet. Insurance and all sorts of fun things have prevented us from doing that. We've decided we'll pay out of pocket for the testing if need be. Now, we just have to get scheduled to do it. Keegan was referred to a gastroenterologist at the children's hospital in the meantime. He's had some issues that, with our family history, warrant some attention by a specialist. A baseline MRI of the brain has also been recommended. I can't even put into words what this does to my heart and mind. How can I expect my poor nine year old to process it in a healthy manner? It's just so unfair. These boys of mine just haven't gotten a fair shake. It breaks my heart. I realize that this post is a huge downer. It happens. I have days that I'm reminded that I don't even own a cape. Today has been that day. I'm scared. I don't fear dying. I don't even fear the pain leading up to it. I fear the broken hearts of my guys. I think I stay awake at night so I can cry. I like to cry alone. I'm still not exactly sure why, but I do. Crying by myself in the middle of the day is just weird. Not that I haven't done it a million times, but if I have time during the day to stop and think and cry then something or someone is being neglected. ;) nights are quiet and dark. Nights have no expectations attached. So, I guess that's my safe time to cry, and stress, and just let whatever I'm feeling rise to the surface. Right now I think I'm feeling mostly afraid. The unknown is scary. I'll update when know more and am not so scared, hopefully not at 3am.

The boys enter Lynch Land....

2011-04-10T22:12:00.000-07:00

Tomorrow we have the boys first appointment at Doernbecher. Hadley was treated at Doernbecher. Her oncologists there referred her to hospice. It's a place I love, but had hoped to never have the need to return to. Damn. It. Just, damn it.

Tomorrow they will have their little cheeks swabbed for DNA samples so we can check and see if they inherited my MSH2 or Brandon's. One itty bitty teeny tiny piece of DNA...it's caused SO much havoc. Broken our hearts. Now we see if they've inherited this defect too. If they have, we'll start cancer screening right away.

This is one of those times I'd much rather shake my fist in protest and then go on with my life as if I'd never learned whatever it was that was troubling me so much. Ignorance is bliss, but it's also ignorance. The boys deserve to be cared for. They deserve the best chance at a healthy life possible. But really, damn it all. DAMN.IT.

Why couldn't we have known before? Could this knowledge have saved Hadley? Will it be enough to save the boys?

Surgery on 4/12

2011-04-07T19:31:00.000-07:00

My surgeon has decided that a traditional 'open' or TAHBSO is the best/safest option for me. There are several contributing factors, the biggest being the need to be in total control of bleeding during surgery. I have to start blood thinners right after surgery because of my history of DVT. A bleeding situation could get scary fast on blood thinners. Anyway, the recovery is a little rougher, the hospital stay a bit longer, the scars much more significant, but it gets the job done. Cancer averted.

I'm expected to be in the hospital for two days. I'll be out of commission for a few weeks. Brandon is supposed to have the first week off, but after that I may be desperate for some company. I'll keep you all updated on my scar collection.

Thanks for checking in.

Hysterectomy...

2011-04-05T16:30:00.000-07:00

I've known for several months now that I need to have a hysterectomy. Everything must go. I finally put on my big girl panties and returned to the gynecologist's office yesterday. My surgery is scheduled for one week from today, 4/12/11. Wow. Lots of emotions attached to this...but, mostly it'll be one less thing to worry about (less parts to get cancer in).

Now, I'm cramming a bunch of research in and trying to prepare myself. My biggest concerns right now are my history of DVT and hormone replacement therapy, and the fact that it's looking like I'll need to have an open abdominal surgery. I had REALLY hoped to not have to go through that again. *UGH* I will, though, for my guys. Much less risk this way.

I've found a great resource for support and research on this topic. Hope it'll be helpful to you as well.

Hysterectomy Support

Last Chemo Craziness.

2011-03-06T17:15:00.000-08:00

Tomorrow is my last chemo, assuming my blood counts are high enough, and I'm going a little crazy. This is not an unfamiliar phenomenon in our home. I went through it when Hadley ended chemo. Every. Single. Time. It's something I've tried to explain to folks who haven't traveled this road, and I'm sure I'll sound just as certifiable now as I have in the past. That's ok. I'm one with my insanity.

When you (or your child) are diagnosed with cancer the normal response is to follow the stages of trauma/grief. After reaching acceptance you typically are ready to fight. You fight like there's no tomorrow. Damn the odds. The doctors can't predict your destiny. You (or your child) ARE going to beat this. So, you fight. Chemo, surgery, radiation...whatever it takes, you do it. This is where I've been. I've been fighting. I've been putting on my brave face and waging war. Tomorrow is the last battle in that war. After tomorrow it is done. At least part of it. Once the war is over you wait to see how you've done. Who wins. Will the doctors be right or wrong? If you haven't won will you have the chance to fight again? Are you even strong enough to fight again? How does the chapter end? When the battle is done there's nothing left to do but wait it out. Your false sense of control and security is gone. All the dark and twisty parts of your brain come out into the open. Fear tries to creep in. Things get gnarly again. Craziness ensues...

So, while I'm thrilled at the prospect of ending chemo and taking back my life...I'm all kinds of crazy right now. Like so many things...this is a double edged sword.

Consider this my caution sign. You've been warned.

Muir-Torre Syndrome

2011-02-13T12:19:00.000-08:00

http://emedicine.medscape.com/article/1059260-overview

Just saving a link for my oncologist. Need to get a referral to a dermatology Onc.

Team 9500-Shamrocking!

2011-02-10T10:38:00.000-08:00

http://www.facebook.com/event.php?eid=145622505498009

Your team number is 9500. Below are some instructions to help you assist your teammates in registering. Please let me know if you have any questions.

Go to:

http://www.shamrockrunportland.com/

Click on the orange box that says:

CLICK HERE TO REGISTER ONLINE
SHAMROCK HOODED SWEATSHIRTS FOR SALE, TOO

Select category:

Team Option - 15 or more $27.00

Don’t forget to check this box:

I understand and agree to the waiver and release*

JUST CLICK CONTINUE ON THIS PAGE:

If you have a Discount Code, please enter it here:

Fill out all your registration information and don’t forget to put your team number here:

Team Registration Number* *(Children age 12 and younger can be on a Team if the team has at least 15 members who are age 13 or older).*

Well howdy.

2011-02-09T21:20:00.000-08:00

So, I've been awful about keeping up with this blog. I had every intention of being faithful to logging my chemo journey. I had really hoped other folks out there would find it useful. The reality of the situation, though, is that I have a family and friends who all love me. When I'm not feeling awful I am either spending time with them or trying my best to care for them. Caring for people makes me happy, gives me purpose. I need purpose right now. I need to feel needed.

I've struggled a lot over the last few months with my own mortality. Not so much with my own issues with it...but, with the fact that I have a husband and two young boys. I worry. It's a part of who I am. I consider my worrying both a strength and a weakness. A double edged sword at times. It is what it is, I suppose. These men of mine have been through so much. Too much. Another double edged sword. Because they are amazing people their experiences and journeys have helped make them the amazing people they are. Their grief and heartache and challenges haven't crippled them or stolen from the character. They have used every chapter of their story as a growing and learning experience. My boys are tough, but sweet...compassionate. I am proud of them. I have watched my husband's heart grow kinder. He has become an even better father and husband. I HAVE to trust that this would be the case if I were to die as well. I have to believe that they wouldn't fall apart, that they would live, be happy, love, grow...thrive. Getting to this place, where I trust that, though, has been hard. Quite dark. Filled with lots of what if's and tears and pain.

Most people would probably find that morbid. Because I am who I am, and because of my story, I can't be that girl who says "I'm going to be fine. There's no other option." I really wish I could be, sometimes. I can't. I have to acknowledge the 'other' option...make peace with it and then move forward. It's just my process. So, yeah. Morbid? Maybe. It is me though.

I've felt pretty well this week. Last week was hard. I felt pretty cruddy through the entire week. I have some swollen nodes in my neck and jaw that are...troubling. My oncologist checked them out last week and is gonna check them again on Monday. He wants scans if there's no improvement. I sense scans in my near future. (did you hear that sigh and eye roll?)

Overall, though, life has been good. I feel good this week, the sun has been out, my boys are doing well, the mister and I are about to celebrate 11 years of wedded...ness, I kid, I kid. Eleven years of wedded bliss. Plus, only two more treatments left on FOLFOX6. Ten down, two to go! YEEEESSSS! (now do you hear the angels singing? I do.)

In other news, we have until February 25th to get everyone registered for the Shamrock Run! I'll post the team number as soon as I have it. Those of you in Portland who are interested in running or walking with Hadley's Heroes please register with our team!!! :)

Read with caution:

2010-11-28T00:35:00.000-08:00

The closing of an email to best pal:

This bitchy moment brought to you by: Insomnia. We let you live YOUR life, only stupider and with less patience.
And also by:
Chemo. Because you didn't already feel terrible enough when we your body was being taken over by cancer.
With special consideration by:
Hemorrhoids. Only we can make three straight days of explosive diarrhea even MORE fun.

;)

Yeah. Needless to say, this cycle has been a bit of a bummer. Thanksgiving morning I woke up having an anaphylactic reaction to God only knows what. This is the 3rd in the last year and a half now. So far my allergy testing has only shown that I'm allergic to something but, nothing they've tested me for. Swell. This reaction was a bit different than the rest because I'd been asleep in my own bed all night. So, since the Abdominal pain, vomiting and diarrhea started during this 'event' I'm assuming it's related to that. It's not usual
For those side effects to be present this late(day # 9-12)in the cycle. Regardless of what's causing it my body is tired and I'm feeling truly beaten down for the first time since Starting treatment. I really feel like starting another cycle on Wednesday (just 3 days from now) is not possible. I'm exhausted and sick and in enough pain as it is. I'm about to bust out my biggest pair of white granny panties and wave 'em overhead for the world to see. This mama needs a break.

So, there you have it folks. The whiniest, most bitchy Thanksgiving blog ever. I promise to blog about my thankfulness when my attitude has improved. Perhaps after my Oncologist has given me his blessing to skip, or at least postpone this coming cycle.

11/3/2010

2010-11-03T14:25:00.000-07:00

10/27/2010
Many Thanks to DragonLeaf Photography
http://www.dragonleafphotography.com/

It's been a month and a half since my last update. I had intended to update at least a couple times a week. My bad. So, to catch you all up here's a list if what's happened in that time:

I do, in fact, have Lynch Syndrome (HNPCC). An MSH2 deletion defect, to be exact.
We are still sorting through pros and cons and feelings about having the boys tested.
The Lynch diagnosis lead to a whole new set of tests and screenings for the cancers I'm at highest risk for. So far:

Complex Cystic Mass on (R) ovary.
Thickened endometrium
PET scan was negative for rapidly growing cells.
Complete Hysterectomy will be performed early 2011.
Abdomen/Stomach etc all look good.

Tests/Screening still to complete:

Upper GI with Small Intestine follow through.
Ophthalmologist to address possible pressure(?) issues. (Eye pain and wandering eye)
Dermatology-I'll get into that in my next post. (*SIGH*)

So far my blood counts haven't dropped too low or been unable to recover back to normal within a two week period.
November 17th will be my 6th treatment. That will put me halfway through my regimen.

So, today is day one of cycle five. The neuropathy sets in immediately and gets a little worse with each treatment. It's not pleasant but, it's still bearable. I'm very hopeful that this will go away after treatment as it fades almost entirely by the end of a two week cycle. I'm tired and have a pretty wicked headache and a small cold (no fever). Other than that I'm feeling good.

Next Wednesday morning I have the upper GI. Hizzah. I think I'm most nervous about the small intestine. Hopefully it'll all look good. It's already been decided that when I relapse or have to go back in for another resection they'll be performing a full collectomy and I'll have a colostomy for the rest of my life. I'm trying to keep that in perspective and not dwell on it too much. Most of the time I feel so old...like I've been through too much to be only 32. I MUST be older than that. When I think about having a colostomy for the rest of my life, though, I feel very young. Too young for this. *sigh* Brandon is too young...but, I can't go there right now...cause then I cry and that actually causes physical pain right now...so...

Overall the cycles have followed the same pattern. The side effects are a little more pronounced and last a bit longer with each cycle but, the pattern is the same.

Thank you for continuing to pray for, think about and love on my family. If you're one of the lovely folk who have brought us a dinner (or three)...Thank you. There really aren't any words that truly convey what a blessing it is to have that extra time with my family...and to not have to worry about the planning and prep etc when I'm not feeling well. You have blessed our family in a very tangible way and we are thankful. <3 Mrs Breanna N gets an especially huge thanks for organizing all of that. Friend, I'm so glad you are a part of my life. I admire your heart so much. Thank you. <3

If you're here for info and support, I'm sorry I haven't offered much. I have found a couple of links I've found helpful. I'll post a little later today with those. You can also feel free to email me at: CoastieFoxes at yahoo dot com.

So, where's Ashton?

2010-09-16T00:33:00.000-07:00

You know those times when you feel as though you're being attacked from all fronts? Yeah, the past ~~48 hours~~ ~~4 weeks~~ ~~4 months~~ 4 years (ok, so it's more like 6 years...but, who's really counting?!?) have blown hard. Sorry. Well, no, I'm not going to apologize. This sucks and I won't apologize for saying so...

The Mister and I met with the cancer genetics doc at my Oncology practice yesterday. Not only were they able to almost (we're waiting for one last DNA test to come back) conclusively confirm that I do, in fact, have Lynch Syndrome but, they also informed us that my sweet girl most likely inherited the gene as well. The most basic thing I gave my children is fatally flawed...and could have already killed one of them. Not to worry though...the doctor says I shouldn't feel guilty. uuuuummmmmmm, ok. I'll go ahead and do that....as long as you can prescribe cookies to cure cancer. mmmmmmmmm-kay? *grunt* In even better news...my boys each have an independent 50/50 chance of inheriting this messed up DNA as well. EXCELLENT news. Right?!? I'ma go ahead and just say it now. Watch out...Incoooooooming. What. The. Fuck? Yep. There's my attitude right now. Aint she a beaut?

In for real life I'm doing the same as I was before this bombshell was dropped. I have two boys who need me to be stable for them. They have been through HELL already and I absolutely refuse to contribute to their pain any more than I can help. I will say right now that if you see me smiling, laughing, loving, living, hoping right now...it has absolutely nothing to do with my strength or courage and absolutely everything to do with my undying love for my children (all three of them) and The Mister. It is because of them that I am functioning. PERIOD. My love for them gives me no choice but to get up and keep putting one foot in front of the other. End of story. Please don't tell me you couldn't do this, or tell me how strong I am. I'm not. I'm DONE. I'm just a mom and wife who loves her family wildly. That is all.

As if all of this isn't enough...my husband is lying in a hospital bed tonight. He had surgery today to fuse his L4 and L5 and a discectomy. He should be coming home tomorrow. I can't even begin to explain to you how terrible it was for me to see my rock lying in a hospital bed trying to be strong and unafraid for me. I never, ever want to be there again...I will be if need be...but, I truly hope it never comes to that.

In other fun news I did find some studies that showed that Lynch related cancers are resistant to the EXACT (and specifically the main drug) regimen I just started. Ugh. So, I may be putting in a call tomorrow...not so sure I'll even be continuing that therapy. I have some research and thinking to do. I will not put myself through six months to a year of that for NOTHING. No way, no how.

So...basically, I say all of that to say...Don't ask me how I'm doing right now. Mmmmmm-kay? Thanks.

PS. We MIGHT talk straight about Lynch Syndrome at a later date. For now, I'll just say that The Mister, who is super even keeled (no nautical pun intended) and deals only in reality and never borrows worry...looked like he might pass out or vomit...or both in the doctor's office when she was explaining what the next several years...and rest of my life are/could look like. Super *ugh*.

Treatment Day 5 & 6 (9/12-9/13)

2010-09-13T10:43:00.000-07:00

Sunday morning I woke up feeling a bit better. I was still ridiculously tired and quite nauseated but, was doing thismuchbetter than I was Saturday. So, there's always that. The Mister and I slept in, got breakfast (I actually ate two medium size pancakes!!!) and then headed home. The Mister drove the entire way again while I slept in the back seat. I slept and slept and slept...then we picked the boys up. I was still totally nauseated and tired...but, was feeling a little bit better than I was that morning. Hizzah! I even ate (and kept down) a bowl of cereal for dinner. By the end of the night I was feeling pretty decent. My biggest issue by bed time was that I couldn't sleep. Ha ha. I guess that's to be expected. ;) I did finally get to sleep and actually woke up on day 6 (Monday) feeling rested and only a teensy bit queasy when I opened the fridge and caught a whiff of leftovers. *gag* So far, though, no meds for side effects today. I MAY even get some housework done. Then again...I may just sit on my tush and milk it a bit. :)

PS. One great thing about having cancer...it's like being pregnant. No matter how you look people TELL you how "GREAT!" you look every time they see you. So, all of a sudden I'm only expected to look "Great...(waitforit)...for having cancer." *SWEET* I'm gonna have the biggest darned ego of ever by the time I'm finished with treatment. Yessssssss.

And on a more ~~serious~~ genuine note, the lyrics to this song are amongst my faves. Not a fan of the song itself. It'll do...until someone amazing covers it...*wink* The lyrics do speak my heart though.

Treatment Day 3 and 4 (9/10-9/11)

2010-09-13T10:21:00.000-07:00

Day 3
Today started out much the same as yesterday. I was a bit more tired. Had a really hard time getting out of bed and getting the boys to the bus but, I managed. I had an appointment to have my pump disconnected and port de-accessed at 11:45 am. I felt relatively well until I was on my way home from that appointment (around 12:30). My biggest issue at this point was fatigue. There was nothing I could do to stay awake. I got home and crashed out on the couch. Luckily The Mister was able to get off early, as anticipated, and get the boys off the bus because I was dead to the world. I slept from about 12:45 Friday until The Mister woke me at about 6:30 am Saturday...

Day 4
and I cried at the thought of having to get out of bed. The happy thing is that he's amazing and brought me Compazine and water in bed. Then he brought me Imodium and water in bed. Then I spent the next lifetime in the bathroom trying to keep both drugs down...got myself showered...re-took the Compazine. Threw some clothes and cosmetics in a bag (with help from The Mister because I was WAY too whiney and nauseated and tired to do it on my own like a big girl) and we loaded the Puppy, the Boys, my whiney self and The Mister up in the Yetti and headed out. We dropped The Boys and The Puppy off with Taminda (aka my favorite biological sister) and Uncle B. and hit 84 East headed for The Gorge. We bought tickets for Brad Paisley's H2O tour with Darrius Rucker (aka Hootie) at the beginning of the summer. I really, really, really didn't feel up to this but, I really, really, really needed to hug my BFF who was meeting us there with her man. I slept the ENTIRE way there. I mean, like EVERY SINGLE SECOND...except the few where I woke up long enough to take compazine and try to fall back to sleep before I puked. The Mister and Bev (my beloved Garmin) got us there in record time. We checked in to our hotel and got changed and I got to hug the bestie and we were off. A couple more doses of compazine, a 7 up, some animal crackers, another 7up, and a soft pretzel and I was golden. Of course, the food just mentioned was THE ONLY food I'd eaten in 48 hours...but, y'know.

The concert was great. Fortunately for all the other attendees they were there to see the musicians, not me. Although, I do worry that The Mister spent most of the concert lovingly watching over me...wanting to protect and spare me any discomfort...OR...just really hoping he wouldn't have to convince Security and/or Grant County Deputies that I really hadn't had a sip to drink while I was hurling ALL over the darned place (which wouldn't be the first time...but the first time I'd have done it sober *wink*althoughI'mPrettySureI'dDenyItPublicly*). So...he was worried about one or the other. I guess only HE really knows. *GiggleSnort*

I would like to publicly thank Mr Rucker (aka Hootie) for reducing me to a puddle of mush while he performed his hit It Won't Be Like This For Long. Thank you Mr Rucker. No, really...I totally came to the concert for THAT. Urgh. That's a whole different blog post. Ok,movingon...

Treatment Day 2

2010-09-13T09:38:00.000-07:00

I woke up feeling a bit wonky. Mostly just yuck or fluish but, without the fever and the nausea. The headache was still hanging on for dear life. I took a vicodin and while it's not gone it's tolerable now. If it gets worse I'll bump up to 2. I got the boys on the bus at 7:15 this am and by the time I got back in the door I thought I was gonna lose it all over the entryway floor. Thankfully I was able to hold back. I took a compazine (nausea med) with some room temp water and sat still on the couch and it has passed. The compazine made me a bit drowsy for about an hour but, I managed to stay awake. The day passed more or less in this same fashion. I was able to get the boys to the docs office for well child checks and shots and get dinner made. Overall, the day was better than I expected.

9-8-2010 Treatment Day 1 FOLFOX6

2010-09-09T10:05:00.000-07:00

My first chemo infusion went well. My pre-meds made me really tired so I slept through the better part of the 5.5 hours. No complaints there. It did take a bit longer than I was told to expect. This created a bit of a schedule issue with getting the boys from the bus. The mister was actually in pre-op appointments and an MRI so...he couldn't really help. Everything worked out though...so that's good. Side effect wise I was mostly just tired. When I woke up from my nap I had quite a headache. My stomach was a bit upset but, not really nausea. I think it was more intestine related than anything else. I did also have an odd sensation of feeling hot and cold and sweaty and clammy all at once. It was really odd. If you've ever seen the movie Walk Hard there's a scene where Dewey is in drug detox and the doctor says "he needs more blankets AND less blankets!" (Ok it was way funnier in context in the movie...but, that's more or less how I felt. Ok, I HAD To share it:

Another odd side effect I experienced is sensitivity to cold. I was warned about it and that it will get worse with each treatment...but, scoffed at it. Now, I get it. If I try to touch or eat or drink anything cold it results in pain. Sharp, stabbing, ridiculous pain that feels like rally cold fire or frozen pins and needles stabbing me over and over. It's dee-lightful, let me tell you. Supposedly it'll only last a few days after each treatment. Thank goodness. While it does last, though, I have to be super careful about exposing myself to anything cold. Hizzah. It could be worse. It could be worse.

I came home from treatment with a pump. It fits nicely in the pocket of a hoodie, or has it's own little strappy deal you can use to carry it around. So far I prefer the pocket method. It is infusing a chemo drug called 5FU into my port (I'll give more details on that later, as well) over a 48 hour period. I'm thankful for this technology and my ability to be home during this infusion.