Life's Journey

Yesterday is a painful blur… the chemo hangover officially started and came at full force. I felt it coming on Saturday evening. I quickly got more tired than usual, nauseous, and super achy. But, in the middle of the night the pain woke me up. Sharp shooting pains through my bones. Damn the Neulasta shots! These shots help keep my white blood cell (wbc) count in normal ranges, but they produce some wicked side effects. The worst of which is bone pain. There’s no way to really describe bone pain, but it’s kinda like ice picks being shoved in my bones. Unfortunately it hits me everywhere, my legs get the worst of it but it shoots through my arms, my skull, my ribs… there’s no silver lining in this one, it’s just pain. So I take it one step at a time while going through the hangover days. Yesterday I spent most of the day in bed just sleeping through it. Unfortunately the vicodin hardly makes a dent in the pain, but it does help knock me out for awhile. I hate wasting a day in bed, but it’s apparently what my body needed yesterday to get through.

Today is a little better. I still have significant pain in my bones that I’m just trying to get through. The nausea is getting better today. But I’m still pretty darn tired. I think the hangover this time around is a lot harder because it’s a bigger dose of chemo than last year. Granted I’m not having radiation every day, but the side effects of the chemo are much more intense.

Roy has been a huge help. I know that there are times that it gets frustrating for him, but he’s been taking good care of me. I’m so lucky to have him by my side through all of this… I know it’s not easy for either of us. I also have a dear friend that came over while I was sleeping through the day yesterday and she planted flowers in all my flowerpots outside. She brought me a little sunshine! Another dear friend has kept me well-fed. I have received nightly texts of what’s on the menu for the evening and later a delivery. I’m finding I’m not eating much, but what I am eating is yummy :).

We are still planning to drive to San Diego for Thanksgiving. I was hoping to leave today, but it looks like that wasn’t meant to be. Hopefully tomorrow will be better and I can take the 5 hour car ride. I’m looking forward to spending time with Roy’s family. All the nieces and nephews will be there so I have put together some craft projects for us to do together. I thought it would be fun for them and something I can do while just sitting at a table with them. We will make name place cards for the table, placemats, turkey handprints, fingerprint ornaments… lots to do.  Screw you chemo hangover - you can't hold me back!

Sending hugs & smiles.

My first day of chemo has come and gone. Yesterday was a long exhausting day… but it’s done. My mom went with me to keep me company and drive me home. We got there at 10:30a and didn’t leave till 4:30. Six hours of drip, drip, drip chemo being fed into my body. It starts with fluids and steroids. Then Benadryl – that one makes me a little loopy. And finally the two bags of chemo drugs, Carboplatin and Taxol. I am wiped out by the end of this. I was grateful to have my mom there with me… we talk and play games on the iPad together. For the record, I can beat her at backgammon even when I’m being drugged

Today I woke with the “Taxol Flush”. This drug makes my face and chest go red and feel like they are on fire. Just looks funny and is a little annoying but really no biggie. Got up, got dressed and ready for today’s appointments. First on the agenda was a PET Scan – we did this as a baseline scan or the “before” picture. Then toward the end of January we will take another scan to compare and determine how the cancer is responding to the drugs. The PET Scan process is also long and I was apparently more tired than I realized because I feel asleep – twice! That was some good napping  Next on the agenda was a Neulasta shot. These are no fun, they burn like hell and sting for awhile… and today I got stabbed in the belly with it! Uck! These are also the shots that leave me with bone pain, which I’m attempting to ignore.

I had to fast this morning for the PET Scan so I was actually quite hungry after all this. Mom was with me again today holding my hand through the day and we went to a great little lunch spot near the oncology office. We had a nice lunch together and then ran a quick errand before heading home for the day. I climbed into bed and crashed out for a couple hours – wiped! I woke to find an invite from a friend (and neighbor) to come over for a latte – this gave me a little pep in my step and inspired this post.

I think most of you have seen that I posted my bucket list. As I was building my list I realized that I have always lived my life doing the things I love and following my dreams. I have had many amazing opportunities to do things that would normally be found on a bucket list. I started my own list of “Amazing Things I’ve Done”! Things like: work with lions and tigers and bears (oh my), find my soul mate, go sky diving, visit Paris, Venice, Switzerland, and Prague, learn to surf, go ziplining, horseback riding on the beach, spend time in the Hawaiian Islands, walk through a rainforest… the list goes on. I have had some amazing experiences in my life. So when I sat down to think about what I still want to do I thought “pie in the sky”.

The top of my list is to go on safari. This is something I have always dreamed of doing for as long as I can remember. The only reason I never made this happen is because of the time and money needed… I wish I hadn’t waited. This is what I learned while building out my list… don’t wait to do the things that make you happy. Don’t put off doing something that you “dream” of doing – just go do it! Live each day and allow yourself to do the things that you want to do. BE HAPPY!

My list goes from the “pie in the sky” Private Yacht Trip with friends in the Caribbean. But let’s talk about that for a minute… really? How amazing would that be? Who wouldn’t want to live like a rock star with your closest friends for a week sailing, partying, and eating great food through the Caribbean? Then I started thinking about things that I’ve said “wouldn’t it be cool to...” go to a taping of the Ellen show or be on a game show. Let’s be honest, these are things that would be SO MUCH fun to do and are achievable if you apply yourself, but do you apply yourself to do it – nope. No more waiting, no more putting it off – let the good times begin! Caution to the wind!

After posting my Bucket List two of my dearest friends took it and did something unbelievable. They created a fundraising site to help me achieve the things on my list (http://www.gofundme.com/1ikg9g). I am overwhelmed and utterly speechless. I never imagined that I would be sitting on this side of something like this… I am so grateful to have so many people out there that have reached out and contributed to the site. I have no words that can express the emotions that have overcome me. I am already starting to plan. I am creating things to look forward to and have found this to be extremely therapeutic! And I have you all to thank for that!

While sitting in chemo yesterday I got a call from someone at the Arizona Cardinals Football League. They explained that they had received a letter from one of you, my angels, expressing my desire to stand on the sidelines during an NFL game and shared a link to my bucket list. He went on to tell me that he is going to make this happen for me. My mom later told me that I told this guy to “Get outta here!” while on the phone with him – I just couldn’t believe it! So, I sent him our info and am waiting to hear back from him with details, but we are going to the sidelines for the Cardinals/Rams game the Sunday after Thanksgiving. Holy cow! I am so excited!

This is one of many stories I can share that have overwhelmed me just over the past few days since the site was created. Angels have offered airline miles and hotel points, places to stay, and more. You can see more on the site if you are interested: http://www.gofundme.com/1ikg9g As I start crossing items off my list I will post pictures here for everyone

Thank you just doesn’t seem like enough. I have tears rolling down my cheeks as I write this as I am truly overwhelmed. You all mean so much to me and I am more than grateful. Through this I have learned that despite all the crappy medical cancer stuff I have to deal with… I am blessed. I have so many people that have reached out to me in ways that I can't even put into words. People have sent prayers and smiles from around the world. Friends and acquaintances have reached out and sent beautiful letters of how I have touched their lives. There is nothing more I can ask for, I am grateful. I can close my eyes and know that I am at peace with the life I have lived.

Sending hugs and smiles!

Tomorrow is the big day – the first day of chemo. Ugh. Sigh. Stomp. I’m a hot mess! I feel like I’m running around in circles but not really getting anything accomplished. It’s exhausting. And I keep forgetting things – I mean “come on man!” chemo hasn’t even started yet and I’m already getting chemo brain!?!?  Today I had to get two new tires on my car (oh yeah because when it rains it pours!). I went to the grocery and stocked up on drugs, fluids, and bland foods. I checked my medication list and ensured that I have everything I need – labeled and color coded in the cabinet. Oh that’s right – I said it – color coded. I labeled my drugs so I remember what they are each used for and categorized them with colored labels – pink is for nausea, blue is for constipation, green is for pain… and so on. It’s my little sanctuary of an OCD style sanity. My sancuso patch has been slapped on my shoulder – oh I love my patch! It is a nausea blocker! It was the first thing I asked for yesterday at my doctors appt  I’m taking a crapload of steroids tonight and more in the morning to help prevent an allergic reaction to the chemo. Check, check, and check!

Yesterday at my doctor’s appointment we discussed a different chemo plan to try. Instead of getting one big fat ugly chemo dose once every three weeks, I will be getting a 21 day cycle of chemo. Day 1 I will get a full dose of both Carboplatin and Taxol. Then on Day’s 8 and 21 I will get a smaller dose of the Carbo. Then it starts all over again. So I’ll be getting chemo every week. Apparently this is a new dosage plan that was used in Japan with good results. The expectation is that I will feel pretty crummy and have the chemo hangover 3-4 days after treatment on the first week. Then the second and third weeks I will just feel tired. The catch is… there is no end in sight. This will continue as long as my body will let me or until the cancer stops responding. The main concern is that my White Blood Cell count will crash and I won’t be able to take more chemo. So we are going to try to take precautions to help fight that. One day at a time.

Because of the holiday next week we can’t fully do the 21 day cycle effectively. So we instead will do a big fat ugly dose of both drugs tomorrow. This will mean that I will not get another treatment for 3 weeks. That will kick off the first 21 day cycle. Phew, there’s no easy way to explain that. Tomorrow I will hopefully schedule chemos through the end of January. I’ll add the schedule to my calendar on the site and keep ya’ll posted.

I have posted my bucket list and have so much to share about it… but that will have to come on my next update. For now I am, as previously mentioned, a hot mess in anticipation of chemo tomorrow… deep breath.

Sending hugs & smiles.

Time does funny things… when it comes to waiting on test results it seems that time can’t possibly be moving any slower. One day seems like a week and the results can’t get to me fast enough. On the other hand, once the diagnosis is in… time is suddenly moving in fast forward and my world is topsy turvey. I can’t even keep up with myself.

Last week I had my portacath (“port”) placed in my chest. This is a small medical device that works like a built in IV line. It has a little silicone bubble like port that then connect to a vein in my neck. This allows them to easily collect blood for labwork and give fluids, meds, and chemo without putting in an IV line each time. I had this last year for chemo and just had it removed last August. I was so excited to get it removed thinking this was the final “all done” transaction. Sigh. But knowing that I had to go through it again I figured “easy peasy” I’ve already done this… just get er done!

I wasn’t quite prepared for it, but got a call that said I was scheduled for the next day and needed to be there in the morning… the only response is “um, ok”. The Port is put in (and removed) while under conscious sedation. This means I’m not totally under, but they give me stuff so I totally don’t remember anything either. Well… except this time. They totally f’ed this “easy peasy” procedure up! It started when the nurse put in a bad IV. I told her numerous times that it was bad but she was insistent that it would be fine. I told another nurse who told me “it’s a short procedure and will be fine”. Finally I told the anesthesiologist that this was a bad line and he tested it saying it’s not strong, but it should be fine. FAIL! The line blew before I was sedated. I was WIDE AWAKE… the doctor told me he was going to numb the area – which btw is the equivalent of shooting acid into your chest. I just kept telling myself it would be over soon as I gripped the edge of the surgery table with white knuckles. I won’t go into all the details, but I was never really knocked out at all, I remember every second of the process, the tugging, the heart racing, the pushing, pulling and cutting. This was one of those time cannot go fast enough moments. When they finally told me they were done all the anxiety and stress I was “managing” was released and I lost it! I was crying (or sobbing) and yelling at the same time. I was appalled that this happened and no one would recognize the issue. All I wanted to do was kick the nurse that placed the bad IV and refused to listen to me. But, lesson learned, if you are not comfortable with your medical care – you DEMAND something better or someone higher up to review.

Anyway, the port is in and I am healing. I forgot how much this little guy hurts. It’s super sore and makes it hard for me to do things like put a shirt on or off or wash my hair. But it’s getting better and should be quick to heal. They always say after the procedure that it’s ready to use the next day – um, let me be clear with this one… there is no way in hell someone is going to jab a huge bendy needle into my chest within a week!

Tomorrow I have an appointment with Michele and Dr. Borst at my Oncology office to ensure that we are on the right path and what to expect from this chemo treatment. I decided to have all treatments done with the oncologist I’ve seen for the past 4 years vs Mayo because at this point it’s chemo – it’s pretty standard and I can’t imagine doing this without them at my side. They’ve already scheduled my first chemo treatment – this Thursday. Phew – talk about the fast track all of the sudden. I got the call today that I was on the schedule for Thursday. “um, ok”. While I knew it was coming and I want to start fighting this thing I think there are some things you are never really able to prepare for… Chemotherapy is one of those things.

I’m getting it started before Thanksgiving and then hopefully hitting the road by Sunday or Monday at the latest to go to San Diego for the holiday. We are heading out to spend turkey day with a bunch of Roy’s family. I’m really looking forward to the escape. We are going to Lego Land with the nieces and one of the nephews, maybe hitting Sea World, and just enjoying our time together. I’m so lucky to be embraced by Roy’s family. They are a great family and I love them, I’m blessed.

I am nesting in preparation for chemo. Cooking things that provide left overs and frozen meals. Washing my favorite blankets, pulling out my slippers, and lining up my comfy clothes. I went to the farmers market and bought a square of wheatgrass for juicing, fresh kale, fruits, ginger, and veggies to juice. I have proteins, glutamines, and vitamins galore. The medicine cabinet is full of tummy rollercoaster meds, pain meds, and nausea relief. I have books, movies, and computer games loaded.

I’m ready for you… LET THE FIGHT BEGIN!

I’m always the “silver lining” girl, the cheerleader, the “mother hen”… but right now I’m feeling quite overwhelmed. This diagnosis is impossible for me to fully comprehend at this point. I guess I should take a step back as I have avoided posting an update for a while. I don’t want to be a downer on this blog, but what I’ve come to realize is that sometimes that’s just going to happen… so here’s the latest.

Roy and I went to meet with the Chemo Doctor at Mayo on Monday. She pretty much told us what we already knew was coming. There is no magic wand, no fairy tale pill that I can take to kick this thing. I don’t qualify for any current clinical trials and there are no antibody drugs that will fight this type of cancer. I will need a strong chemo cocktail given once every three weeks. The chemo agents will be Carboplatin and Taxol – these are in the same family of drugs that I used last year, but these doses are 3 times as strong and I will not be given radiation in conjunction. They explained that the side effects will be similar – tummy rollercoasters, fatigue, flu like symptoms, and hair loss. All manageable. I will get chemo, feel like crap for 3-4 days, then get back on track for a couple weeks in preparation to do it all over again. There is no end in sight. This is palliative care at this point, this will not cure my cancer. The hope is that the cancer will respond to the chemo and shrink a little and stop growing and spreading. Then we keep dousing it with chemo until either it stops responding or my body becomes too toxic and can’t take the chemo anymore. That’s when the cancer starts to win.

Because my cancer has done everything it’s not supposed to do we may need to change chemo agents along the way. But, the one advantage I do have in this whole mess is that I am young and otherwise healthy so hopefully my body can fight for a few years. Yes, that’s what we are talking about here, a few years. I’ve asked all my doctors about a prognosis – what does “a few years” really mean. The bottom line is that everyone responds different, but in their experience we are hopeful to fight for 2-3 years. We will understand it better once we see how chemo impacts everything. We will run tests and scans to see if the cancer is responding and how my body is holding up. We will keep track of side effects and symptoms that indicate things are or aren’t changing the way we want them to. My life is now going to consist of waiting… waiting for treatment, waiting to start feeling better, waiting to get the next test, waiting for results, waiting to… wait! So far that hasn’t been easy for me, but I am working on accepting that this is just how life is going to be, I can’t change it so I just need to deal with it.

I can’t begin to describe the emotional chaos that comes with a diagnosis of terminal cancer. I started out just numb and probably a little in denial. Then I moved to utter sadness – sometimes the tears come at the most random of times. There’s anger that shows up every now and then – I’m pissed off that this is happening! But what I’m working toward is acceptance. Once I get to that place all the other emotions will be manageable. I’m getting there, one day at a time…

What I have come to realize (and I think this is the first step toward acceptance) is that I am truly going to make the most out of every single day. I’ve said it before and just having cancer touch your life in any way you are taught that every day is such a great gift and it should never be taken for granted. But now I am faced with the reality that my days are limited and all I want to do is enjoy them. I’m working on my bucket list – my list of things I’ve always wanted to do. That will be an upcoming post… but what I’ve realized is that I have always lived my life to the fullest. I have no regrets, no one to make amends with, I have done many of the things that would be put on a bucket list… I have lived a good life and I am grateful. I have found the love my life and am so lucky to have him by my side through all of this… holding my hand, telling me it’s going to be ok, and loving me. We are enjoying life together.

I am also overwhelmed with gratitude for all of you. If you are reading this blog it tells me you care, you have a place in my heart and I appreciate you. You each support me in your own way. You may be a family member, a friend, or maybe someone who found my blog that is dealing with cancer – even if we’ve never met – you are dear to me and I thank you for always being there and sending smiles.

Now that I’ve gotten the hard news out of the way, I will start posting more often. There is a lot that is going to start happening and changing in my life and I will write about it. I will be honest about it here… it’s not always going to be butterflies and rainbows… it’s life with cancer. There will be tears but there will also be laughter and smiles that will be shared.

Hugs & Smiles,
Sarah

I always forget how much I love a good lazy football Sunday until I get one. That’s exactly what we did this past weekend, it was definitely a day of rest. We went from bed to couch to “big red” chair and back to bed. It was one football game after another and watching my fantasy team kick butt!

Since my last post my recovery has been going well. I'm able to take fewer pain pills each day.  Bending is getting a little easier and stretchy wasted pants are a more viable option – lol. (it’s funny cuz it’s true) The belly button is still gross – I mean, seriously how do they do that? Stick a probe into the belly button – yucka! But, I can’t complain, I’m grateful for a surgery with minimal recovery and no complications.

I heard from Mayo Clinic regarding next steps. I am scheduled to meet with Dr. Karlin on Monday, Novemeber 5th. She is the chemo specialist at Mayo. Dr. Margrina updated her on my history and current situation. She should have some additional test results for us as well. My biopsies were sent out for additional fancy pants testing to help us determine which drugs will best fight my cancer. I’m amazed at how far treatment has come just in the past 4 years that I’ve been fighting this beast. So, here’s what we know so far regarding my treatment:

• Surgery – this is not an option for me due to the metastatic spread of the disease that was discovered during the robotic procedure
• Radiation – it seems there are a number of reasons why this is not an option but mainly because we radiated this area last year they won’t radiate it again due to the amount of damage to the tissues in this area
• Chemotherapy – this is my best option. The challenge now is to determine the best combination of drugs that will effectively fight my cancer. This is where Dr Karlin comes in… chemo is her specialty and she should be able to give us a strong treatment plan
• Clinical Trials – these are generally chemo based and are reserved for advanced cancers that haven’t responded to the traditional treatment methods listed above – yup, that’s me. But, there are specific qualifications that you have to meet in order to participate in these trials and unfortunately there isn’t a good fit for me
• Monoclonal Antibody Drugs – this is something new and somewhat experimental. Dr. Magrina spoke to us briefly about it and said Dr Karlin would discuss further but it may be a good option to consider. I hadn’t heard of this before so in true form I started researching. Here’s a link to learn more if you want to check it out. It sounds very cutting edge but maybe that’s what I need this time around.

While I don’t have all the answers right now, I’m hoping that Dr. Karlin can provide more information next week. She will be able to fill in the blanks when it comes to next steps and give us a strong treatment plan. I will take this plan back to Dr. Borst (my oncologist for the past 4 years) and his team to get their input as well. I want to be sure I’m making the best decisions possible for me.

This week I am spending my time with family and friends doing things that make me happy. I know my situation isn’t great and I will be fighting this beast every day for the rest of my life. I think I haven’t fully faced this reality yet, it’s really difficult to come to grips with. So for now I am enjoying every moment… I am not going to waste a minute.

Sending hugs and smiles,
Sarah

Where to begin...  I guess I'll start with Monday.  The fancy pants robotic laproscopic surgery went well on Monday - no complications.  Everyone at the Mayo Hospital is very friendly and I am grateful to Dr. Borst (my Oncologist) for connecting me with them.  I was able to see the Da Vinci Robot machiene when they took me into the surgery room before they knocked me out.  It was quite impressive.  I found a You Tube video that shows how it works, Click here if your interested.  Pretty cool stuff.  And I knew I was in good hands with Dr. Magrina at Mayo - he's one of the world's best at using this robot.  I was knocked out pretty fast and before I knew it I was waking up in recovery. 

Roy later told me the procedure took about two and half hours (which was the blink of an eye to me).  Waking up in recovery was fairly easy.  They have very quiet and peaceful recovery rooms and the nurse assigned to me was super nice.  I was in some pain and feeling some nausea so she quickly gave me extra meds.  She checked in often asking how I was and supplementing my meds as needed.  I was dozing in and out of conciousness but did realize that this wasn't the intense pain I was used to waking up with after surgery.   As I became more alert I realized I had 2 IV lines and a band aid from another IV attempt - placing an IV on me is tough because all that I've been through.  I still am not completely clear on why they added another line, but they felt it was necessary.  I now have 3 IV wounds and lots of bruises - but honestly it's the least of my worries.  After a couple hours of recovery time the nurse helped me get dressed and brought Roy in.  She went over all the discharge instructions, incision care, medications, etc and asked him to pull the car around...  holy crap!  I was going home!  I knew this was potentially an option, but whoa!  I was actually going home after this surgery.... 

I remember looking at my belly on the drive home, it was super swollen and I have 4 little incisions (about an inch each) - 2 on each side of my belly button.  And my belly button was packed and covered with tape.  Yup, and EW!  They went through my belly button!!!  Uck - it still makes me weak at the knees to think about it...  But, that was it...  tiny incisions.  Totally different than any of my previous surgeries.  We got home and I fell asleep pretty quick in "big red" with Ben at my feet.  (FYI, "big red" is an ugly maroon colored recliner that came with Roy, but it's perfect for surgery recovery - in fact I'm sitting in it right now ). 

Later that night Roy and I talked about the procedure and he told me Dr. Magrina came out after the surgery and talked to him about the findings.  It was not what we were hoping for...  he found more metastatic disease than we anticipated.  This means the big surgery (pelvic exenteration) is not an option for me.  I had my follow up with the doctor today and he gave us some additional information.  He biopsied 8 spots during the surgery from various areas of concern in the pelvis area.  All 8 came back as adenocarcinoma (this is the same cancer I've been fighting for 4 years).  While all the cancer is contained to the pelvis area it is more widely spread than we expected - this is why surgery is no longer an option.  He also performed a cell wash - the results of this tell us that there are cancer cells floating in this area as well.  Surgery can't remove what we can't see and would be fruitless at this point.  The only option at this stage is chemotherapy.  He has sent the biopsies off for additional testing that should help us identify or create a chemo cocktail that will best fight my cancer.  He is scheduling me with the top Mayo Chemo Specialist - I am waiting on a call to know when I can get in with her.  This is when I will find out answers to all the chemo related questions you're asking right now - when, where, how much, how often, how effective, etc.  I don't have any of these answers right now.  I'm not sure if I'm more scared not knowing or to find out more about what this means?

I am continuing to rest and recover from Monday's surgery.  I'm told it takes about 2 weeks for total recovery.  The pain from the CO2 gas they filled my abdomen with has been the worst so far...  It makes it hard to breath and travels up my shoulders and back - ouch!  Slowly it's getting better.  The incisions are healing well - the belly button one is just gross, painful and well just gross - so I won't talk about it.    Bending is a challenge and pants are out of the question.  I'm getting around ok... but have been super grateful to have Roy's help.  I'm taking stuff for pain, nausea, antibiotics, and anxiety.  Still pretty sleepy, but it's been good to catch up on movies and my "crap" shows that Roy hates to watch

Just taking things one day at a time...  more to come.

Dearest Family and Friends –

These emails are becoming more and more challenging to write, but I need to let you all know about my current health situation. Over the past two months I have been through a long list of testing, poking, prodding, and scans. It has been confirmed through biopsy that my cancer has returned. It’s crushing, discouraging, and frankly hard to wrap my head around another recurrence so soon. But, it’s happening and I need to dust off my boxing gloves and get back in the ring again and fight this thing!

My team of doctors has grown this time around. I have met with a highly respected group of oncologists, surgeons, and specialists to determine the next best step. My oncologist over the past 4 years was able to connect me with an oncologist at the Mayo Clinic here in Phoenix. He is world renowned for his skills with the Da Vinci robotic surgery tool. He offered to perform a laparoscopic exploratory surgery using this robot. This is a great opportunity. He will be able to look around for any other metastatic disease and biopsy as needed, he will take lymph nodes for testing to ensure the disease has not spread to the lymphatic system, and he will be able to get a close look at this recurrence area and determine what he thinks the next best step is based on his findings.

This procedure is scheduled for tomorrow (10/22) at the Mayo Hospital in Phoenix. Depending on how much he needs to biopsy and how invasive this is I will either spend one night there or maybe come home the same day. Full recovery from this procedure is about 2 weeks.

This is my third encounter with a cancer that has done everything it’s not supposed to do. I’m not sure what lies ahead beyond this procedure, but I am preparing for a very difficult journey. As always Roy has been by my side holding my hand and helping me find my strength every step of the way. He will send everyone on this distribution lists updates when I am not able to. Last year I was overwhelmed by the support, smiles, and friendship that each of you gave me. All I can ask is that you once again send happy thoughts my way.

We will be in touch when we are able to provide updates. I have also started posting to my blog site again, rather than send emails to everyone I found this is a great way to keep in touch. View the site at http://stompkins.webs.com/ You are welcome to join as a member, instructions are on the home page, and you can comment, post, etc.

Sending hugs, smiles, and lots of love,

Sarah

Courage doesn't always roar.

Sometimes courage is the

quiet voice at the end of the day saying,

"I will try again tomorrow."

- Mary Anne Radmacher

Life Legacies from my Grandma:

LIVE DEEP

Never stop learning, playing or finding wonder in the world around you. Live the length of your life, but live the depth of it as well.

TRAVEL LIGHT

There is no use in carrying around worry and regret. They only weigh you down. Always keep yourself open to hope and to love. They give us wings.

FORGIVE IMPERFECTIONS

in yourself and in others. Imperfections keep things interesting. They're the cracks where the light shines through.

OWN BEAUTIFUL THINGS

And not just to keep in the drawer, tucked away for a perfect day. Surround yourself with things that make you happy, that remind you of the beauty all around us if we only keep our eyes open to it.

MAKE MISTAKES

Follow detours. Sometimes it takes an unexpected turn to help us find the life that is waiting for us around the bend. Trust yourself and the path that is meant for you.

TAKE CARE OF YOURSELF

And sometimes that means you need the ice cream. Be good to your body, but also to your mind and spirit. You're the only one who can.

AND ALWAYS, ALWAYS KNOW THAT YOU ARE LOVED

You are a gift to this world and a blessing to us and that will never change.

I haven't talked much about Insurance since the whole radiation incident at the beginning of treatment, but I feel that this is a topic that should be discussed.  I know there are a lot of visitors to this site that are also facing a journey with cancer so I thought I would share with you some of my insurance revelations.  Here's the thing, health insurance is big business, they don't care about you or how much money you've been paying them over the years.  What they care about it the bottom line. 

I'm a planner.  I like to research and educate myself before jumping into something, I mean you always want to know the temperature of the water and the depth of the pool before you dive in - right?  Before I went in for surgery I called my insurance company to (1) ensure that everything is covered and (2) talk through potential charges and try to get an idea of how much all of this was going to cost me.  I knew that I was going on short term disability and budgets were going to be tight so I wanted to have some idea of what to expect.  In talking through it with the helpful agent on the phone I realized that it may not be too bad.  I had a Max Out of Pocket limit on my policy of $3000 and a Deductible of $600.  She explained that this meant that once I paid $3600 I would be done with the exception of perscriptions.  While this is a significant amount I did a little happy dance in my chair since I was expecting a much higher number.  I asked her again to clarify that this was the cap and she confirmed.  I asked her to look for the fine print and again explained my situation (of course at the time I didn't think this was going to be cancer but I did explain that it could lead to further treatment) and she once again confirmed these amounts.  I was proud of myself for looking into this and felt a little weight lifted going into it. 

When I got home from the hospital and was recovering the bills started pouring in.  I was getting bills from the hospital, my oncologist, the anesthesiologist, the pathologist, the labs, the radiologists, everyone wanted money from me.  I was having a hard time figuring out what had been through insurance and what I really needed to pay.  So I put them all is a pile and waited for them to process further before researching.  As I started coming off the pain pills - I recommend this as a first step because this stuff is mind numbing without the pain meds - I started sorting the bills out.  I literally sat at my dining room table and had stacks of bills sorted and sprawled out everywhere in an attempt to organize.  Then I started writing checks. 

Ok, first...  track EVERYTHING.  Don't think that anyone else is going to do this for you.  It's unfortunate and it's the last thing you want to think about when going through something like this, but take the time to organize and track it.  When I say everything...  here's what I mean...  E-V-E-R-Y-T-H-I-N-G!  Keep a calendar of your appointments, put all your reciepts in an envelope or file, when you pay a bill keep it and file it, when they charge you a co-pay get a receipt... everything. 

Second, stay on top of your insurance.  Here's what I quickly learned...  they will take their sweet ass time negotiating with the medical facilities and making their payments.  The medical facilities will not always wait for the insurance before coming after you for the money.  Make sure you are only paying what you are responsible for and sending the rest back to your insurance.  The insurance will also not track your Max Out of Pocket balance for you.  Although this seems logical and would be beneficial to everyone involved...  it doesn't happen.  My suggestion, open up excel and build out your own spreadsheet and balance tracker.  Ok, I'm crazy color-coded and ocd when it comes to building out tracking spreadsheets but seriously, it's worth the time in the end to do this from the start.  I anticipated the insurance company helping me more with this and having better record keeping on their website.

So, once I paid my $3600 I was responsible for I quit paying.  I held on to the bills but figured they would process through my insurance and get paid.  Um, why do the bills keep coming?  Why is this one now coming in a pink envelope - while I love pink, that can't be good?  Here's the catch - you have to keep up with the insurance to know which portions to pay to who.  OMG - this task seems next to impossible.  This is how people end up paying so much more because the insurance makes it so hard to know who to pay what and the medical facilities will just keep billing everyone until they get money.  UGH!

I called back my super helpful insurance agent lady to help me through this.  All of the sudden she was not as eager to assist and she no longer appeared to have that happy smile in her voice I heard prior to my treatment.  Well hello Jeckle & Hyde.  She told me to look on the website and have a good day.  Yeah, not so helpful.

I finally thought I had it all balanced and paid my Max Out of Pocket when:
Ring Ring
"Hello, this is Sarah"
"Sarah this is CBD, we are collecting an outstanding debt on behalf of Banner Hospital in the amount of $792.08"
"Wait, what?"
"Yes ma'am, you have an outstanding debt in the amount of $792.08 with Banner Hospital, I'm also showing a collection in the amount of $1476.84 with Arizona Oncology."
Once I picked my jaw up off the floor I explained that I had paid my copays on all my bills and that these should be taked care of by my insurance.  She in turn explained that once the bill has gone to collections both the medical facilities and the insurance are no longer involved and it is my responsiblity and my credit on the line.  Holy crap!  So she explained that my best option is to go ahead and pay these, then report to the insurance and get a refund from either them or the medical facility.  Cause yeah, that sounds like fun.  I asked her to please put the case on hold for 30 days while I consult my insurance company - ok, this is a good tip for everyone, they MUST do this for you if you tell them this is in deliberation with your insurance.

Here I go calling my oh-so-helpful insurance agent again.  I explain the phone calls and the pink envelopes that are coming in.  She explains that it appears that these bills are an accrual of copays with these medical facilities.  Ah, easy peezy I thought, I've already paid my Max Out of Pocket these should come back to you.  That's when she dropped the bomb: "Oh, copays aren't included in your Max Out of Pocket balance".  HOLD THE PHONE!  WHAT?!?!?  She expained that the 20% balance on the previous bills is coinsurance not copays and that my Max Out of Pocket only includes the coinsurance amounts.  There it is...  the fine print that no one tells you about and it's a doozy!  I snapped...  well it's not really a MAX out of pocket then is it?!?!?!  Why didn't anyone explain this to me when I called to inquire about expenses, why can't I find this information ANYWHERE on the website?  The website they told me was the all powerful Oz of information?  "Yes" she says "it appears this information isn't posted to our website but it can be found in your policy documentation"  Ok, in this day and age, who still recieves a paper packet of documentation?  Everything, as they had been telling me all along, is "posted to the website"....  except the fine print!  Next piece of advice - find the printed policy and read every line.  Yup, there it is, copays are not included in the Max Out of Pocket expense limit. 

Now I am drowning in a sea of collection agencies and pink envelopes.  My credit card balances are racking up and my pennies are being pinched.  In the beginning of this long drawn out story I mentioned that you should keep track of all of your appointments and everything.  Here's why.  When I took the 25 page bill from my oncology office I found a few discrepencies.  There were a few applied copays that should not have been there.  One day I was charged 4 copays (lab work, chemo, radiation, and an injection) while they were all done in the same facility... 

Here's my final piece of advice in all of this...  learn how to play "Let's Make a Deal".  The catch is that once the bill has gone to collections, it's too late, Whammie, No Deal!  But, if you work with the medical facility before it is sent to collections you can usually work out a reduced total and a payment plan.  It costs them more to send it to collections, they will avoid that if they can.

In re-reading this I realize maybe I just have a super crappola insurance company so I did some quick research - nope, I have one of the top companies. I've learned a lot about the healthcare system and there is definitely a significant room for improvement. For those of you facing a medical journey of your own I hope my story helps you avoid or better prepare for some of the headaches that I faced. This was one part of the journey that caused a lot of unnecessary stress. But, I will continue pinching my pennies and chipping away at my new found debt as I can...  in the end I realize that you can't put a price on saving your life - right?  Outside of these headaches I am doing well, enjoying getting back into the swing of life.  The adventures have only just begun...