Well, we are cautiously optimistic again this evening as we have finished day two. Today was certainly a bit tougher as it was a second day of very intense treatment and it continues to wear down his body – however all in all still a good day. 2 down, hopefully only 18 more to go.
 
Tom received the same chemo cocktail today as he did yesterday which is made up of three different drugs.  We decided that if this chemo was an actual cocktail and had a taste it would be either be a gross rail gin or one of those terrible shots with tabasco sauce in it. (Tom then proceeded to have flashbacks to his 21st birthday – oh to be in our early 20’s again…) You’d be amazed what you end up talking about when you’re distracting someone from chemo. (Stay tuned for our rewritten lyrics of The Fresh Prince of Bel-Air Theme Song – because our lives really did get flipped turned upside down.)
 
We were reminiscing this evening how this all started just two weeks ago today. It’s amazing that in fourteen days we were able to figure out that Tom had a rare cancer, meet with a slew of doctors, get a treatment plan, have surgery and already be two days into chemo. I truly believe the speed at which we did this (and needed to do this), is part of the reason we are going to beat this thing. In the past two weeks amongst all the chaos, we have learned to celebrate the little victories, be grateful for all that we do have,  and are trying to do things that make us feel “normal”. For example, our evening stroll around the hospital – it’s like our evening walks in our neighborhood except with much cleaner sidewalks and less questionable yard decorations.   
 
Here’s hoping day three of chemo is another decent day and starts October off on a great note! 

Well…..so far, so good. Actually no, so far, so great! We’ve conquered Day 1, with 19 more days of chemo to go (stretched across the next 12 weeks, but nonetheless, we will be counting down the number of days of chemo!) We checked into the hospital this morning and Tom received his first blast of chemo. During chemo he is on a constant drip of fluids and preventative treatments in addition to chemo treatments throughout the day.
 
The port proved to be a great decision on our part, as it has made this much easier on Tom and it’s clear that as we have these sessions in the upcoming months that it will make things quicker and more efficient too. We sort of were waiting for the symptoms to rear their ugly heads all day, but for the most part his body responded quite well. Now, we recognize that this is only day one, and often times the symptoms don’t appear until he’s had the treatment multiple days….but we are just so grateful that he is feeling better than we expected. Set the bar low and you’ll always be satisfied – right? I’m sure there is a motivational poster out there somewhere with those exact words on it  :) 
 
We are incredibly grateful for the amazing staff of nurses here who have been so accommodating, educational and helpful. They are truly walking angels on earth! Here’s to hoping that Day 2 is  even better than  Day 1…and that Tom doesn’t beat me twice in UNO again tomorrow night.  

We have had tons of resources, information, and books given to us in the past few days as we have been trying to comprehend everything we are experiencing . Tom's cousin Laura is an oncology nurse in California and sent us this great guide that I found quite interesting, both for the patient, and friends/family of the patient.  Some great insight and well written - it's a bit long - but worth a skim through some sections!  (Note: If you are reading this on a mobile phone you wont' be able to see the document below, you can only see it on a desktop computer. Sorry!)

What. A. Day. Our day began bright and early (hence our beautiful photo to the left) at the hospital for Tom’s Iron Man (port) surgery, and despite some nerves – he has never “gone under” before – we were ready to get this thing in and get treatment going. They set him up on some fluids, asked him the routine questions for surgery and got him ready to go. After a brief delay, he was getting wheeled down to the Radiology Surgical area and we met with the doctor who showed us the port and walked us through the procedure. 

The port is in Tom’s upper right chest and is a double line port – he’s got the Cadillac of ports – so that he can use the port to both receive chemo and also take out blood for the various testing required throughout this process. Ultimately, this fancy port eliminates the need for him to get pricked repeatedly and damage his veins. Small victories. 

The actual port procedure was only about 30 minutes, the longer part was getting him in twilight and comfortable prior to and after the procedure. He was wheeled back to his pre-surgical room and had a little breakfast and boom – we were on our way home. For those that know me – I love an efficient operation :)

He relaxed this afternoon, got some rest and tomorrow we begin chemo. Chemo sort of feels like this dimly lit road that we know we have to walk down, but don’t quite know the way. We know all the side effects that COULD happen, we know it’s likely not going to be pleasant, but until we do it once, we really won’t know what to expect. Here’s hoping this is as pleasant as possible! 

Highlights of today include:
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1.    A nurse who didn’t feel bad for ripping out Tom’s arm hair as she was pulling off the tape from IV – she calmly said “This is payback for the fact that men get to stand to pee”. 

2.    I’m getting comfortable in our new home away from home – here’s a shot of me working at the hospital and creating an efficient cup holder. Never mind the warning on the contraption that says “Not safe for skin exposure” – it’s just Diet Coke. (Photo Credit: Dorinda)

​3.    For the first time in almost two weeks Tom didn’t feel nauseous for a brief time! To make the most of this appetite prior to chemo starting tomorrow I got him whatever he was craving (and crossed my fingers he didn’t request our favorite pasta dish from our trip to Venice, Italy). Lucky for me he was just craving Outback! 

4.    While picking up a prescription for Tom, I got pulled over. I can summarize that entire experience with one sentence. I should have been a lawyer. I was lucky enough to get myself out of a big ‘ol ticket. 
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We will update everyone soon on how chemo is progressing – thanks for all the love and prayers! 

A bit of a random post here - but someone was kind enough to send us a few games, but there was no card, note or anything that helped us figure out who it was from. If you sent these to us, could you please let us know, or shoot me a text? We love them, and want to make sure we say thanks where thanks are due! 

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​We are officially on day 9 our new “normal”. I have to say, it been incredibly weird that some hours have felt like days (typically when we were waiting for results/doctors), and yet in reality the last 9 days have been a complete whirlwind. We knew when we got the diagnosis that we would have to move quickly, so I went into turbo mode and we had quite the lineup of follow up appointments, second opinions, and much more this week. (Translation: A ton of paperwork) We are fortunate to live near some of the best doctors in the U.S. and were able to go to University of Chicago Hospital & Rush Hospital for 2nd & 3rd opinions this week. We found out some interesting facts along the way, the most mind blowing one being that less than 400 people per year in the U.S. have the type of cancer Tom has with the tumor in the soft tissue around the lung. Hence why it was so important to get second opinions and seek out doctors who have ever even seen this type of rare cancer before.
 
After taking all the information and attempting to process it, we finally have ourselves a plan. Obviously, I use the word plan loosely because so much of this is going to evolve as we go and see how Tom is reacting and how well the tumor is shrinking, but it’s a short term plan nonetheless. So Monday begins what will be quite an adventure for the next several weeks. Tom will be having surgery for his port – we are affectionately referring to this as his Iron Man Surgery. Then, as mentioned, we are moving quickly so chemo starts Tuesday. Tom will be receiving one of the most intense types of chemo treatment possible for a few reasons (1) the type of cancer he has (2) his age (3) we make sure this thing doesn’t spread. After our first week of chemo, Tom will have two weeks off, and then we start it all over again. We know this is going to be tough, we know he is going to have to fight hard but we are ready to get treatment started.
 
To prepare, we met with our oncologist and went through everything to expect in great detail. After going through all the symptoms of his chemo regimen with us, Tom jokingly replied “This is like the commercials you see on TV that once you hear all the symptoms/side effects of the drug you think to yourself why the heck would anyone ever take that?” A valid point.  But, if this gets us to cancer free then we will manage the symptoms and carry on. :) 

Despite what has been an emotional week with lots of decisions, we are incredibly grateful for the team of doctors we have and how comfortable they have all made us feel in this process. So now we relax this weekend and prepare for next week…

In our attempt to keep things positive, and maybe have some good come out of our crummy situation we were doing some thinking: 

We like to consider ourselves compassionate and positive people, we like to pay it forward, do nice things for people and/or strangers, and of course over tip nice servers since we both worked in the service world. ;)  Last week, as we were driving home from the hospital, Tom looks around as we are driving home and looks to me and says, “Do people know how sick I am?” Oofta. Hit me right in the heart, but certainly an interesting perspective. 

From the outside looking in, he looks like a normal 30 year old guy and we look like your normal young couple, but dang, that is just the surface. Fast forward to that afternoon when I was picking up the prescriptions and the woman at the counter was irritated that I had a question – my immediate reaction is to want to yell out “My husband was just diagnosed with cancer and I’m scared and I need help from the pharmacist”. But yet, she has no idea….

Now why do I say all this? Not because I want the world to know our problems, or to feel bad for us, or treat us any differently, but because you truly don’t know what that stranger next to you is going through. Of course there are a handful of rude and mean people in the world because they simply are rude or mean people, but if we’ve learned anything this week, it is to have even more compassion - because you never know what the person next to you is going through.  

Tom & I have learned quite a bit in the last week - the most jarring being how quickly life can change. Suddenly trips that were planned are on hold, priorities shift and we start to embrace the new normal. Among all the messages etc., and a few million dollar questions keep coming up: 

1. Were there any symptoms? Did we expect this was coming?: No, 100% no. On Tuesday, Tom got up early, went for a run, and felt a little weird when he got home. He showered up, went to work, was pretty fatigued Tuesday night with a cough, but nothing completely unusual. We figured he maybe was catching a cold or bug. We were up throughout the night Tuesday as the cough worsened and she started feeling worse. In the wee hours of the morning we made the decision to head to the ER and the rest is history. 

2. What type of cancer is this? Well, it's rare. Because if you're going to get cancer, you might as well be unique. It has been diagnosed as a germ cell tumor which is currently located in the soft tissue around his lungs. 

3. Has it spread? Luckily, no. For now we are dealing with the primary tumor with no additional cancer tumors in his body. 

4. What's Next? Chemo. A long rigorous sequence of chemo and one surgery, but one that we hope will completely remove the cancer from his body. We are very optimistic that with the right treatment we will beat this cancer. More to come on the What's Next over the next week as we meet with doctors and get ourselves a plan.

Hope this helps! 

What we know so far:

• Tom has been diagnosed with cancer.
• We have an amazing network of friends and family that have got us in contact with some of the best doctors in the US. 
  
• We will absolutely, positively, no doubt in our minds, beat this. 

In it's simplest form, that's all we've got right now. The next 3-4 days will be lots more appointments, follow ups and a treatment plan. We will be posting on here what we can, it will be raw, it may be funny some days, and hard to read other days. So hang in there with us, and we will be sure to keep everyone informed. 

And for proof of bullet #3 above here is a picture of us on Wednesday - our first night in the hospital - when I obnoxiously curled up in a tiny hospital bed with Tom and we chatted for hours and got ourselves a plan to beat this thing. Here was our "We Hate Cancer" selfie :)  Lot's more to come and thank you all for the support!