Chemo....moving on up!

It's been almost 4 weeks since starting my lower doses of chemo.  I'm finally up to half a pill a day.  I'm thrilled that the side effects have been pretty minimal.  The biggest hurdle has just been feeling so gosh darn tired all the time, but other than that, it's been great!

I looked at the tumors this morning after I showered and can see a significant difference in their size since the last time I saw the oncologist.  He said that I should see any further shrinking till I'm back up to a full dose, and yet he's wrong......again.  Normally you don't want your oncologist to be wrong, but in this case, I'm SUPER thankful he is.  =)

Our family has been getting showered with blessings this past month.  My parents and my brother each gave me $1000 to help with medical bills.  That pretty much got us up to date with what we owed the Dr.s thus far.  A few weeks ago some friends from high school dropped off three big boxes filled with tons of food, goodies to make chemo easier, and a gift cert for 4 full house cleanings by a professional. 

Then last week and this week our church got word of my diagnosis and people have been coming by dropping off dinners.  There is so much food in the house it's insane!  A lady from our church also knitted me a lap blanket to keep warm!

I'm completely overwhelmed by all the generosity shown to our family.  It's been mind blowing.  It's made me realize that when I'm over this life hurdle, I want to get more involved and help others as well.  Something as small as making a meal for someone can be such a huge blessing and I want to be a part of that. 

I see the oncologist on April 3rd and will report back when I've got some more info.

ALLERGIC TO MY CHEMOTHERAPY

It's been about 3 weeks since I started chemo.  The first few days were great and then the nausea set it, big time!  I also started experiencing some other fun side effects like my stomach burning (like I ate lava), heartburn, night sweats, insomnia, exhaustion, not thinking clearly. etc.  Then on the 11th day on chemo I was scratching my arm and noticed some pale red dots all over it.  I ran into the bathroom and stripped off my clothes and low and behold I was covered in spots.  Itchy spots.

A few hours later they looked like this.

By this time the itching was out of control horrible!  I'd called and talked to the nurse of my oncologist earlier who told me to stop taking the chemo for 1 week and use hydrocortisone to help with the itch.

The cortisone did absolutely nothing.  zilch.  At this point I'm going crazy.  Anything touching any part of my body, like clothing, was making the itching unbearable.  These hives were on my toes all the way up on my scalp.  The only place I didn't have any was my face and neck.  I tried taking an oatmeal bath, then a baking soda bath, then dabbing on white vinegar, then started googling anything that might help.  Nothing helped.  That night was terrible.  I'd fall asleep and move then wake up to itching because the sheets touched my skin. 

The next morning my entire body looked like this.

The red spots were getting bigger and bigger and eventually you could barely even see any regular skin.  I just sat on my couch and cried.  There was nothing I could do and the itch was so intense.  A friend of mine made some lavender salve using real lavender essential oils.  I tried it and for the first time in 3 days I had some relief!  It didn't take the itch away 100%, but it cut it down by at least half.  I felt like I could semi function again.  I had to rub down with the salve every couple hours, but it was worth it!  I saw the oncologist on Monday and he was extremely concerned about the rash.  He told me it was a severe allergic reaction and can sometimes be fatal.  Seriously?!  Ugh!  So this week he told me to cut my chemo pills into EIGHTHS!  I couldn't believe my pill cutter was able to do it successfully!  Next week I'll take 1/4 pill, then 3/8's and so on and so forth until I can make it back up to a whole pill.  He hopes doing that will allow my body to slowly acclimate and not react in such a dangerous way. 

Unfortunately this chemo is the ONLY chemo that works on my type of cancer, so there isn't much they can do if I get another rash except tell me to go off the chemo completely.  I'm trying to stay positive and not let all the "what if's" pull me down. 

$300 breakfast

So yesterday was my 1st day on chemo. 

 

 

It wasn't too bad, but the nurses did say it can take a few weeks for the full brunt of the side effects to set in.  I felt a little nauseas a couple times, but that was about it.  I know as my red and white blood cells start to diminish I'll be feeling a lot worse.  In the mean time I'm going to just enjoy feeling good. 

 

I was able to get this 90 day supply of chemo pills for free.  Hurray!  My case worker at the oncologist was able to pull some strings.  I'm super thankful because this little bottle of 90 pills would have cost me $30,000.  Yep  30K!!!    Or almost $300 per pill.  I've never held anything worth that much in my hot little hands before.....seemed odd to have to be pills that make you feel crappy.  I had my breakfast followed by my expensive little pill and smiled.  I'm super thankful that I even have the opportunity to get this awesome medication and get the chance to kick this cancer's ass. 

 

 

We had a nice enjoyable Valentine's day.  My husband and I don't really exchange gifts, but he did surprise me with a small package of my very favorite candies in the whole wide world. 

 

 

It just doesn't get any better than these.  I ended up making a cheese fondue for dinner and then cut up various breads, veggies, and a green apple to dip.  For dessert I made a chocolate fondue and we dipped oreo crusted marshmallows, brownie and pound cake bites, strawberries, and bananas.  It was delicious!  I was able to eat about one bite of each dessert option before my tummy said NO MORE!  My eyes were definitely bigger than my stomach.  Then we all settled around the tv and watched a movie together.  I thoroughly enjoyed my evening with the loves of my life.♥

 

 



 



Starting chemo on Valentine's Day

What a whirl wind of life events!  Overall I think I'm in a really good place mentally.  I've accepted the prognosis and am looking forward to starting chemo so those tumors can start shrinking.  I live in a pretty small town in Idaho and we have one of the top 5 sarcoma oncologists in the nation literally 4 minutes from my house.  Praise the Lord!  Also I found some insurance that will be somewhat affordable.  We'll still have to pay about $10,000 in total costs, but considering my treatment will be at least 10 times that, I'm incredibly thankful!  I'm also thankful that I don't have itty bitty kids at home.  They will be gone at school for most of the day, so if I'm feeling icky or tired, I can rest without feeling guilty about ignoring them. I'm also thankful that I don't work.  Although we don't live in the lap of luxury, I choose to stay home with the kids as they grow up.  Because of that, I don't have to worry about missing work.  Many mommas have to work just to keep their families going month to month and that's not something I'll have to worry about. 

I've been doing a ton of thinking and so many people ask, WHY ME?, when something bad happens.  I don't really feel that way at all.  I figure life throws everyone curve balls once in a while and this time it's my turn.  I can be devastated by this cancer, or I can use it to be truly thankful for the good amazing things I do have.  I can really savor the small moments that so many of us overlook.  Maybe, just maybe, this cancer is a huge blessing in disguise. 

Some good news.....I was given three months of free chemo drugs.  Woot woot!  That's $30,000 worth!  Also the chemo I'll be on is a daily pill vs sitting in a depressing room with an IV in my arm.  This chemo is freaking amazing....it's the only one of it's kind and many Dr.'s refer to it as a silver bullet.  It sets it's sights on the cancer cells instead of how most chemo works, which is kill all cells, good and bad.  Although it has a huge laundry list of side effects, losing my hair isn't one of them.  Joy!  I also have a ton of friends and family who have so kindly offered to help with meals, shopping, cleaning my house....if I need it.  If I do in fact face some of the nastier side effects, I'm still going to be taken care of...my husband and kids will still get everything they need.  WOW!  Am I a lucky girl or what?!

So yeah, I'll be starting chemo on Valentine's Day, but I say BRING IT!  I'm going to be thankful that I live in an era with such amazing technological advances that I get the chance to go from being someone with cancer to someone who is cancer free. Hurray!  Thank you Jesus! 

cancer update

I officially have dermatofibrosarcoma protuberans or DFSP.  It's a super rare skin cancer.  It's not caused from the sun, as most people assume and it's usually found in areas of the body that see little to no sun.  It's slow growing and most people are misdiagnosed for years and year, just like I was. 

I officially meet with the oncologist Monday morning.  From talking to the financial advisor, it sounds like the Dr.  wants me to start chemo asap.  This specific cancer drug costs $10,000 per month!  She's going to try and see if she can get me a free 90 day supply.  Can you believe how expensive it is?! 

I contacted crossfit and told them they needed to put my membership on hold.  I will not be able to continue the high intensity workouts during this process.  I still plan on getting exercise, just on a much smaller level.  I still can't believe all this is happening to me.  My biggest worry a week ago was how I was going to scrape together $500 to pay for the removal of what I thought were cysts.  Seems pathetic to what I have to face now.  Between surgeries, MRI's, CAT scans, chemo, labs, etc, I'm going to guess this is easily going to cost $100,000 or more.  I have no idea how it's all going to work itself out, but I have to have faith that it will. 

Very rare does this cancer spread, but it does have a high chance of coming back over and over again.  To be honest, reading all the side effects of the chemo has me a nervous wreck.  This is just so much......so very much to worry about.  My husband starts his night job this Sunday evening.  My rock and comfort will be gone working when I need him the most. 

At this point I'm just trying to take it day by day, hour by hour.  Looking too far in advance just scared the poo outta me. 

It's cancer.

C A N C E R   Is there an uglier word.  Both my Dr.s told me it wasn't cancer and yet the pathology report came back today and said it was.  Apparently it's a super rare cancer that does not spread to other parts of the body, which is a good thing.  If they can remove it all during surgery, you're cured.  Still..........I've been shaken to the core.  I'm scared, really really scared.  I won't know anything further until I meet with the surgeon Monday afternoon. 

hurtful phone call and a biopsy

I have a large cluster of cysts under my left breast and got much bigger once I started crossfit.  I'm guessing because of the irritation of the sports bras.  Anyway I had some a few years ago and had them surgically removed about 1 1/2 yrs ago.  Unfortunately they've come back with a vengeance.  They are incredibly tender and hurt ALL the time.  My husband and I cannot afford health insurance but we do have a family Dr. who we pay a couple hundred dollars a month to and in turn we can see him as many times as we want at no charge.  He can do basic minor surgeries, cast a broken bone, and do many things that most general practitioners can't do.  He's the Dr. that removed my cysts the first time.  ANYWAY I went to see him a couple weeks ago about these new ones and he said that he couldn't do the surgery because it was too big and now there was too much scar tissue for him to remove them safely in the office.  He found a surgeon who was willing to help me at a discount and I went to see him yesterday. 

He said that  in order to treat the cysts properly he needed to do a biopsy on a couple of them and send them off to a lab.  That way he'll know exactly what he's dealing with and how to properly fix the problem. 

So I agree to have him do the biopsy right then so we could get the ball rolling.  I had NO idea it was going to be that painful or bloody!  Now the biopsies I've heard of involved a long slender needle being injected and a small amount of fluid/tissue would be extracted.  Since my cysts are not filled with fluid he had to use a biopsy plug. 

 

 

 

That is a tortue device if ever there was one.  OUCH to the mother freaking 10th degree!  He had to take two tissue samples and blood literally was pouring down the left side of my body.   My heart was beating a million miles a minute and felt like it was going to explode out of my chest.  I'm nervous to hear what we find out.  He did say that to do surgery would cost me at least $5000 and the biopsy alone was $500.  FUDGE!  I hate never having enough money. 

 

 

So needless to say today I'm sore, grouchy and feeling uber depressed.  I got a phone call this morning from the secretary of our family Dr.  She said it was time for me to come in and get an updated tetanus shot,check my cholesterol levels, and to see if I've done anything about being morbidly obese.  Then she gave me a lecture about how being obese increases the odds of developing diabetes.  As soon as I got off the phone I just burst into tears.  I feel like I've been working my tail off at changing my eating and exercising.  She just came across as completely uncompassionate and rude. 

 

I'm almost 10 months into crossfit and today I just felt like a big fat failure.  Am I ever going to get my body in shape?  Will my hard work ever pay off? 

 

To top off  the fun times, my husband starts his night job next week.  I'm scared of my life being ripped apart at the seams.  My health, financial, marriage, etc. 

 

 

Here's hoping for something positive to happen.  I don't know how much more of this I can take.

So many things!!

I'm still alive and ashamed to say that I'm a crappy blogger.  I know it's cliché to say I've been busy, but dammit, I have been!  With Christmas over, life has started getting back in a normal routine, which I'm extremely thankful for. 

A quick recap, I've been going to all my scheduled crossfit classes, exercise at home on the days I don't crossfit and have been eating 100% paleo.  Like seriously not one bite of anything nonpaleo.  Let me just say I feel GREAT!  I have more stamina , I'm sleeping better, my mood is better, and just in the last week I've lost 3 inches from my belly.  WOOT!  Mentally I feel totally "in the game". 

Here is a picture Meagan took a couple weeks ago of me doing some back squats.

I saw her pull out the camera and I immediately wanted to hide in the bathroom.  I wish I didn't critique myself so much, but I do.  It's really something I need to work harder at NOT doing.  I saw this picture and all I could see what a fat pudgy belly, fat pudgy legs, and my torso wasn't as upright as it's supposed to be during back squats.    Now if I turn off the negative voice in my head I can look at this picture and say that my ass was below my knees, which is what we strive for, the weight isn't bad and damn, I'm doing something I never thought I'd do in my wildest dreams. 

My form will continue to improve, the weight load will get heavier because I'll get stronger and that's that. 

My crossfit is currently running a Paleo challenge.  We earn points for working out, doing mobility exercises, and posting daily recipes on facebook.  We have to deduct points for cheating.  We also have to take before and after photos as well as thigh and belly before and after measurements.  I am 100% in the mindset that I'm going to win.  I'm doing everything in my power, every single day, to earn that chance to win.  I feel in my heart I want it more than anyone else and I tell anyone that will listen to me that I will be the big winner.  I'm 10 days in and feel awesome!  Our last day is Valentines day.  Woohoo! 

I will try to get better at blogging.  I promise.  =)

1 week till Paleo Challenge kick off

I'm super excited for this coming Paleo challenge at our Crossfit.  It starts Jan. 6th and runs for 6 weeks.  This time it costs $40.  There will be two winners, 1 male, and 1 female.  They will split the moola.  The smount of money you can win, will completely depend upon how many people sign up.  I gave my $40 to Meagan this morning and officially signed up.  I was also the very first one to sign up....that's a good sign, right?  I fully plan on winning this thing!  I have the most fat to lose (female wise) in the gym, so I think that gives me a bit of an advantage.  I hope! 

I made it to the gym today and got my behind handed to me on a silver platter....or should I say, my arms?!  My arms felt like jelly afterwards and still feel quite weak and sore.  I didn't realize that I PR'd my back squat today.  115 lbs.  Still not a great number, but I was happy with it. 

Not much else to report.  I'm glad Christmas is over.  It was stressful and frustrating.  I'm just ready to get 2014 started. 

Every victory is a Non Scale Victory!!!!!

After throwing away my scale last spring...I must say that it's a decision I don't regret in the least.  I love reading fitness and weight loss blogs, but I swear most of them center around what the flipping scale says or doesn't say.  I let my scale wreck havoc on my life since I was in 5th grade.....almost 25 years! 

Since joining crossfit I've met some AMAZING people.  There are a couple girls that are tiny.  They are extremely muscular but all in all, very small....and they weigh WAY more than you'd ever think.  The scale doesn't show body composition, it doesn't show muscle mass, it doesn't show how your endurance and stamina have increased.....it shows nothing except a number. 

It's so fun to see small victories without even blinking an eye about what the scale might say.  I get true joy when I set a personal record while doing a lift, or doing 18'' box jumps for the first time, or going on a run and not feeling as fatigued as I would've a month earlier.  I love it!  I wish all of us would throw our scales away and just work hard.  We all know that if we eat better and get more exercise we'll lose weight and get fit......so why do we need a scale to tell us something we already know?  I read a blog not too long ago where the gal was frustrated that she weighed 125 lbs and couldn't get back to 122 lbs....which is where she wants to be.  Ummmmm......SERIOUSLY?!    Do you look good in your clothes?  Do you feel good about yourself?  Are you making good choices?  Then freaking WHO CARES what the scales says?  Good grief! 

The other thing is I swear all scales weigh slightly differently.  I remember weighing myself on my bathroom scale, then on my basement scale only to find an 8 lb difference.  Needless to say I convinced myself that I was the weight that was the lesser of the two evils. 

If you are one of those people who obsess about the scale, give yourself a gift this coming year.  Take a break from it.  Put it in the closet for a month or better yet, throw the darn thing away.  Like anything it's hard at first, but soon you'll feel free of it's shackles....and that my friend is worth it's "weight" in gold. 

By the way.....I bought myself a new kettlebell!  The 15 lb bell was no longer much of a challenge and when I workout at home I needed something to help me keep getting stronger.  Meet my 30 lb bell.  Ahhhh, isn't she pretty!    I love her already!