I finally got the call today while at work from Dr. Londer.  When I saw the number pop up on my phone my heart started racing and I stopped everything I was doing, sprinting down the hall to one of the telephone rooms we have at work.  When I answered the phone I was a tad out of breath and my voice was shaky just from the nerves.  This was a big moment, and I was anxious to hear what he had to say even though I had a good idea.

Basically, the spots are still there, and have grown "slightly".  I asked Dr. Londer if there were any new areas of growth within the mass, and there are not, nor has it spread elsewhere in my body.  Praise the Lord!  It's just those couple of stubborn spots still that we need to kill off.  Is it sad that a weight has been lifted off my shoulders by getting news that my cancer has only grown slightly?  And because of this news, I will probably sleep better at night, and be able to enjoy my weekend.  It seems a bit messed up to me so I can only imagine what you must be thinking.  When you go through this roller coaster of emotions, you'll take any little victories you can get.  When a person has too much time on their hands, it's amazing how fast you can work yourself up into a tizzy.  This cancer could have gone absolutely bonkers since my last scan in the beginning of March, so the fact that it hasn't makes me feel so relieved, blessed, and hopeful. 

So...what's the plan?  The doctors discussed my scan together, and have decided the best route is for me to do a different type of chemo first.  I don't know much at this time about the chemo besides the fact that I'll need to be admitted into the hospital when I have treatment(s) as the chemo is administered over the course of 24 hours.  At least that's what I'm understanding from the brief conversation Dr. Londer and I had this morning.  There will be a stem cell transplant in my future as well.  I have an appointment scheduled to go over the details of everything on Monday morning.  This will give us a chance to see the scan, and to talk about logistics, hopefully having a pretty good idea of what's going to happen with everything.  Once I know, I will let you all know, so stay tuned! 

Scanxiety

Can I just say that this whole waiting for results game is getting old!?  I had another PET scan this morning that Dr. McClune advised me to get, and I thought I'd be hearing something back tonight...at least that's what I was initially told.  I thought it seemed like a pretty quick turnaround, but I didn't question it. I figured maybe they were going to expedite the results somehow so we can finally figure out what the plan is and get a move on with that plan!  Silly me. 

I've been carrying my cell phone around the house all night to ensure I don't miss the call.  I can already predict what they're going to say.  It'll go something like this..."So, we got the results from your PET scan, and the spots that have shown up on your last scan are still there and appear to be growing which concerns us.  Because of this, I think the best route is to go with the stem cell transplant".  It may not go anything like that.  It's just how I've envisioned it.  I've never heard of cancer deciding to just go away on its own, and Dr. McClune said that if it's growing, we should go ahead with the transplant.  My symptoms are coming back, which is 1. frustrating and 2. The reason why I think a stem cell transplant is in my near future. Everything from the shortness of breath, pressure in my chest, even a bit of heaviness in my left arm and the tingling in my fingertips is back.

 It'll be two weeks on Monday since speaking with Dr. McClune.  I'm anxious anyways about the plan, but then to add these symptoms into the mix makes it worse.  Two weeks is a long time when you know you have cancer growing in your body.  I just want it out of there, and I feel like I'm the only one who is in any sort of hurry here.  Whether there is any truth in that or not has yet to be determined.  The doctors are good at what they do so I have to trust in their plan, and above all, trust in God's plan for me.  I've been doing a lot of praying lately that this new plan will be the answer to finally ridding my body of this stupid cancer FOR GOOD.  I'm not looking for temporary solutions.  I want to be in the "cured" category someday...preferably sooner rather than later.  Who wouldn't??  I'm tired of being presented with bad news, and having to turn around and regurgitate that bad news to others.  I'm also tired of people asking me how I'm "holding up" with the sad puppy dog look in their eyes.  I get it.  You feel sorry for me.  Hell!  I feel sorry for myself some days too.  Pity parties are a-okay by me, as long as you can eventually snap out of it, and find the good in your life.  My family and friends are the good in my life, and I will forever feel in debt for the overwhelming amount of love, support, and "funds" Josh and I have received (both for personal use and for our run in June).  We are blessed. 

I crave normalcy.  When I say normalcy, I'm not talking about being able to work, or go to the grocery store.  I'm talking about the day when there are no more regular doctor appointments with an Oncologist or specialist,  no more chemotherapy, PET scan, shots or toxins being pumped into my body.   Oh, and no more weight gain from steroids.  Can I get an AMEN to that?!  Fitting into my pants would be nice without looking like a stuffed sausage.  If the muffin top look ever becomes popular, I'll fit right in!  Ok, now I'm just being goofy and dramatic =)  You get my drift though.

Cheers to finally moving forward with a treatment plan, and getting on track to the road of remission...and normalcy! 

Love this song ~ I'm Gonna Love You Through It - Martina McBride

A picture speaks a thousand words...

 Sometimes I wonder if I jinx myself anytime I open my mouth or write a blog entry about what the "plan" is because it always seems to change right after.

I got a call back from the specialist (Dr. McClune) today after getting a chance to get another opinion from another physician.  Turns out nobody showed up for the conference today except for one other doctor who happens to specialize in lymphoma.  When we met with Dr. McClune on Friday, he started off by reading back to me everything he knew about me based on medical files down to my family history, and any conditions family members have/had.  He gave me the play-by-play of how my diagnosis came about, and did an exam on me to hear my breathing, listen to my heart, and check my reflexes.  Everything checked out fine.  Dr. McClune was missing my last PET scan though, which he was able to obtain sometime after the appointment.  In his words, "a picture speaks a thousand words..." which essentially changed his mind regarding the recommendation initially presented to us.  He was not only concerned about the new growths, but also said it was unusual.  Okay...call me sensitive but "concerned" and "unusual" are definitely NOT words a cancer patient or ANY patient for that matter, wants to hear in a discussion regarding their health, and in my case - the mass.  He said based on the scan, his recommendation has changed to an "auto transplant" (aka: autologous stem cell transplant).  I am NOT thrilled.  In fact, I'm kinda sorta freaking out about this.  I don't like that the "plan" has changed.  I'm a planner, and was just starting to pump myself up for the radiation, which was the initial recommendation.   Something clearly concerned the doc for him to now decide to take a different route as I'm apparently "there" in terms of needing more aggressive care, and that in itself scares the $#%* out of me.

 Josh and I agreed and even expressed to Dr. McClune that we'd do whatever it takes to rid my body of this cancer, so if he decided to take the more aggressive route of the two, we'd do what he said.  I don't have to be happy about it, and I think it's ok that I'm feeling the way that I am, but in the end, if he thinks my chances of getting rid of these stubborn tumors is greater with the auto transplant vs. radiation, that's what we're going to do. Period!

So what's the next step?
As of now, the scheduling department at Hubert Humphrey are in the process of getting me scheduled for yet another PET scan for sometime next week so that we can see where this tumor is at.  I guess Dr. McClune's decision will really depend on what this tumor is doing.  If it appears smaller (doubtful), then we can revisit radiation.  If it's the same size or growing, it's on to the transplant.  I hate to be Miss Debbie Downer, but I see a transplant in my future, which means an extended stay at the hospital.  It can take a few weeks for blood counts to recover after something like a stem cell transplant, and the last thing the doctors want is me exposed to the elements, making myself vulnerable to infection, which could be lethal.

Can you hear my sighs from over there?  That'd be frustration.  Oh!  And please...don't forget exhaustion.  My eyes are bloodshot and puffy from the water works this evening, and my heart briefly palpitates, which is a sign to me that my body is anxious.  My heart is fine.  It's just one of those things I've always dealt with when under a lot of stress.   So how do I combat stress?  I put myself in a "time out" per se.  I put on pj's (matching ones are optional) and I crawl into bed to watch mindless TV...preferably something that's funny.  Laughing is so good for the soul!

Tomorrow is a new day...

Meeting with the specialist

So I suppose you're wondering how today went.  It went well!  Today was the big day I was scheduled to meet with bone marrow/stem cell transplant specialist, Dr. McClune.  We (Josh & I) weren't really sure what to expect when we got there as this is all new to us.  We're old pro's when it comes to the chemotherapy process and how ABVD treatment works, but transplants?  Not so much!

On the way to the U this morning we both tried to prepare ourselves for Dr. McClune pushing us in the direction of having this stem cell transplant since this is what they specialize in.   Plus it means more money in their pockets!  I guess it was sort of silly of us to almost assume that he'd try to persuade us into moving forward with that vs. giving us all options first and weighing what may be the best route for me in my particular case. When it was all said and done the doctor's recommendation wasn't to do a stem cell transplant, but to do a very high dose of radiation followed by another PET scan to see where we're at.  

At this stage of the game I don't really care what they do as long as they get rid of this cancer, but I was still relieved when he said he'd prefer radiation vs. stem cell transplant at this time.  The whole process of a stem cell transplant seems like quite the process.  First, a person goes through one straight week full of tests to make sure they're healthy enough to go through the procedure, and then they go through the actual procedure of removing stem cells from my bone marrow, which goes into a apheresis machine that essentially spins the bone marrow at fast speeds causing the stem cells and platelets to separate from the rest of the blood.  The blood is then put back into the body, and the stem cells are dripped intravenously back into the body while I'm being given a strong dose of chemo.  Dr. McClune listed out all the scary side effects and risk factors depending on if the bone marrow was my own (autologous) or a donor's (allogenic), but I know he has to legally do that so we're well aware just in case.  Hopefully this will not be a path I'll need to go down, and can be revisited at a later date if it is.  

Other than talks of radiation and a stem cell transplant Dr. McClune comforted us with a big list of other treatment options we still have available to us if needed, one of those being the CD30 antibody which to put into layman's terms goes directly into cancer cells and kills just those cells vs. the ABVD treatments I've had that can't detect a cancer cell vs. a healthy one so it kills both.  It's pretty awesome if you think about it that there is essentially a "smart" form of therapy that is now out there that can detect the cells that are cancerous and only attack those.  In thinking back to all the options the doctor listed off to us, it probably would have been wise for us to bring a notebook and write them all down so I could share those with you.  So sorry!  There was a lot of medical terminology being used so I probably wouldn't caught all of it anyways.  Between Josh and I, we should be able to give a general idea of what the appointment covered.  All-in-all though, the important thing is that WE HAVE OPTIONS and that in itself is wonderful news. 

Josh and I left the appointment feeling good about the meeting with Dr. McClune, and felt energized and hopeful in what we had learned this morning.  It sounds like he's going to be presenting my case at a BMT (Bone Marrow Transplant) conference on Monday to hear what the other 13 doctors have to say, and then I should be getting a call either that evening or sometime on Tuesday with what the final recommendation is on their end.  After that I should be hearing back from Dr. Londer on what the plan of attack will be. 

Stay Tuned...

The funeral for grandma B. went well yesterday...or as well as a funeral can go I suppose.  The service was wonderful, and being that the pastor knew Aino on a personal level made it that much more special.  You could tell that he really put a lot of thought into what he was going to say, and shared some funny memories of his own that he had of grandma.  When we went up to the casket to see grandma, I realized she was wearing the same purple dress that she wore to our wedding back in 2007 (refer back to my last blog entry).  Something about this was very calming to me. I can't really pinpoint what it was though.  Could it have been because the last time she wore this dress it was to celebrate us, and yesterday, we were celebrating her and her life? 

We couldn't have asked for a better day in terms of the weather.  The skies were blue and the sun was shining the entire day.  The only thing keeping it from feeling warm was the wind.  When we were heading over to the burial plot I heard a couple ladies say, "well...there goes my hair!".  I can't help but laugh at this.  What were they so worried about??  If anyone was going to lose their hair, it was going to be me...literally!  Wouldn't that have been a sight to see!  Can you picture me running around in heels trying to catch my hair??  Thank goodness the wig stayed in place the entire time we were outside.  It was a little crazy by the time we got inside, but my dear sister-in-law helped fix it for me.  Thanks, Kristin!

Later on in the evening once things settled down and everyone went their separate ways to head home, Josh and I came home and hosted a chili cook-off at our place.  Sure, it made for a long Saturday, but it ended up being so much fun.  After the week we had, it was good to get together with some of our closest friends to catch up, and most importantly - laugh!  There ended up being 4 chili's to be tested (1 of those was a chili casserole with tator tots =)  ), and everyone got a prize - some sillier than others.  I think we're planning on doing some sort of cook-off / bake-off each year just for fun!  It really honestly doesn't matter what we do.  It's more about the memories we create with the people we love. 

I wanted to share this quote and picture that I came across today through the Fight Like A Girl Club on Facebook.  It's so true, and I couldn't have stumbled upon it at a more appropriate time...

"You may not believe that you were built for this journey, but we assure you that you are stronger than you could ever imagine. We know you feel weak, but you are not. You may feel battered from the seemingly endless storms you have weathered, but you stay afloat and ready for uncharted territory. You even take your own precious time to throw others like you a life vest. Be kind to yourself today and remind yourself that you can do this."

What a week it has been...

As each day passes, both Josh and I get a little stronger.  The initial shock from Wednesday's news has started to wear off, and now it's time to brush the dust off from the rug being pulled out from underneath us yet again.  Hopefully this will quit happening because it hurts!  I received a call back yesterday from the U of M, and have an appointment with a specialist followed by an appointment with a social worker (mandatory) on Friday, 3/16.  They said to plan for us being there 3 hours.  If we're going to be spending that much time there, I'm hoping we have a solid plan of attack on how we're going to kill off the remaining stubborn cancer cells.  I don't really care how we do it at this point.  It just needs to happen now!  I just want my life back. Can you blame me?

Yesterday we got the phone call that Josh's grandma Bornfleth passed away.  While this wasn't exactly a surprise since she's been having a rough go the past couple weeks, it's still hard.  You can never really truly prepare yourself for the call that someone so close to you is gone.  The Lord is a lucky man to have such a beautiful angel join his team.  Although we're sad and at times overcome with emotions when talking about grandma B, we're happy for her.  Grandma is finally free from the pain she has been in, and she's reunited with not only her husband, but also with children she has lost.  She would have turned 95 at the end of this month.  I'm sure grandma is looking over us right now as I type this.  I find comfort in that. A person can never have too many angels watching over them, especially during hard times.   

As Josh and I were laying in bed last night, I asked him, "I wonder what grandma is doing right now", and he said, "she's making Lefse" =)  Grandma loved her Lefse.  I'd like to think that she's up there laughing, smiling, and catching up with friends and family.  Maybe even doing some cooking.  You just never know! She was quite the social butterfly, and it seemed like everyone knew her.  I remember a time when Josh and I went to have lunch with grandma at her nursing home and as she scooted down the hall in her motorized chair, anyone who passed us in the hall stopped to say "hi" to Aino.  Before any introductions her friends would usually be able to piece together who we were.  Grandma was very proud of all her children, grandchildren, etc. and talked about her family often so even though her friends may have never met us before, they felt like they knew us through her.  We love you, grandma!  Please put in a good word for me with the big man upstairs.  I know you will!

Aino Bornfleth ~ 1917-2012

(Picture from our wedding in 2007)

It's almost 2:45 (CST) in the afternoon, and as I sit here, I can't help but cry.  These are tears of sadness, anger, and above all fear.  My appointment today with Dr. Londer was not what I expected.  I've been feeling so good recently that I was looking forward to hearing good things.  Instead I received news that my cancer is growing back in a couple of spots.  I think what Dr. Londer said is this can happen with 1 in every 5 patients or so.  Guess I'm lucky number 1.  I'm so upset right now that I could scream, but all that comes out are tears with an occasional breath of air every now and then. 

I know that God has a plan for me, and I have to trust in Him and trust that He knows best as He holds my hand on this journey.  I'm just really struggling right now.  Why is this happening?  Why is this cancer coming back?  Here is my positivity for the day so pay attention because it's all I can muster up at this time.  Right now both spots that are showing up on the scan are apparently about the size of a pea (maybe slightly smaller), so it's not like it's out of control.  Also, the cancer isn't spreading outside of the chest mass to anywhere else in my body.  These bits of information are good news if you want to discuss cancerous spots that have decided to return in my body.

I'm currently waiting for a phone call to get in with a specialist at the U of M to discuss taking a more aggressive approach such as an internal bone marrow/stem cell transplant and if they want to do this, would we go ahead with this before any sort of radiation, or if they think we should go ahead with radiation first.  If we did any sort of bone marrow/stem cell transplant, it would be using my own bone marrow, and not from a donor.  I honestly can't even believe we had this discussion today.  In my eyes, this was supposed to be a good day...a day to rejoice that I've made it into remission.  The room was eerily quiet as we held on to Dr. Londer's every word.  I was in a bit of shock, and couldn't get myself to turn around because I knew my mom was having a hard time with this news and knew I'd lose it if I looked at her.  I think I began processing everything after we got out of the room and headed to the lab for blood work.  That's when the tears started.  I couldn't fight it.  At this point I got straight up pissed off...mad that my body is doing this to me, and that I can't move forward with my life quite yet, leaving this cancer in the dust.  Thank goodness for Josh and my dad.  They were the strong ones today trying to keep some positivity in all this.

What if I never experience what it's like to be in remission, or hear the word cured and Stephanie Madson in the same sentence?   What if this disease takes me from those I love?  The thought of not being around for Josh and even our kitties tears me up to the core.  Lord, give me the strength to continue putting one foot in front of the other, and allow me to find some sort of peace within myself so that I don't allow this bump in the road to swallow me up whole.  That goes for my family as well. 

When will I get my happy ending?

Happy Friday everyone! I don't know about you, but my weekend is gearing up to being a good, yet busy one.  As I was strolling into work on this sunny Friday morning, I realized that today would typically be another "chemo Friday" and here I am getting ready to start my Friday, and not hooked up to IV's at Hubert Humphrey.  It was a nice feeling, and something I could get used to.

When I first received my cancer diagnosis and was contemplating starting a blog, I told myself that if I was going to do this, I was going to really go for it and be completely honest with myself and my followers.  The plan was to keep friends and family in the loop as to what I'm going through in regards to appointments, along with the emotional roller coaster that went along with it.  Of course it wasn't going to be all butterflies and rainbows, and I know none of you expected that.  This is cancer we're talking about here.  I was going to have my good days, my bad days, and downright ugly days (hence the title).  I know my last blog entry wasn't the most positive, but as always, it was raw emotion showing through.  I was feeling some serious anxiety and expressed some doubts I was having.  A few of you contacted me after reading my last blog entry to make sure I was doing okay, and I thank you for your concern!  I'm actually feeling much more positive these days.  I've been trying to get some extra sleep when I can, and have been working out more too which I think is helping my mood.  I haven't noticed any improvements in the weight department, but I'm sure that'll come with time.  This whole journey has been about taking things one day at a time.  

I have my PET scan on Monday morning, and then have my results appointment on Wednesday at 11:45 am with Dr. Londer.  It should be a packed room that day between me, Josh, my mom, and dad who wants to be there for the appointment.  I get butterflies in my stomach thinking about Wednesday, and how it'll be here before we know it.  Please keep me and my family in your prayers.  I think we're going to be just a tad on edge come Wednesday, and more than likely holding our breath waiting (and hoping) for GOOD news from Dr. Londer!  As each day passes my hair continues to grow, and I noticed a couple mornings ago that my eyebrows are even starting to slowly regain some color.  This is exciting and encouraging to me.  I'm starting to feel like myself again, which feels weird to say because I haven't recognize the person staring back at me in the mirror for quite some time now.   There she is though!  Just a stronger, more confident and mature woman.  Just call me Stephanie Madson 2.0!