Well yesterday was a bit of a strange day – a bit of a bizarro world for us. Tom went into work! He only went in for the day to help train the new person, but for him that is quite a lot of activity/energy for him considering his life for the past three months. He was thrilled to see his coworkers, help the new guy get acclimated and feel productive. Plus, he can rest a bit easier knowing that a lot of the year end stuff was taken care of – it’s been very weird for him to be away from work so I think it did him good to go in for the day.
 
Of course, the one day he goes into work we get hit with an ice/snow storm during the commute home. I had quite a harrowing commute home only to end up in a snowbank in my driveway. It took me a solid 20 minutes to get myself out but I used some of my tricks (car mats!) and was able to rescue myself. Of course Tom pulled up right as I had just dug myself out which actually is for the best because I wouldn’t have let him help anyway and he would have gotten frustrated watching me try to get myself out. I cleaned up with the snow blower, until it ran out of gas, and then finished up with some shoveling. These types of things are what really drive Tom crazy because he hates that he can’t help – but he needs to lay low and recover.
 
It’s a bit tricky for him right now – while he feels stronger each day, his body is still recovering from quite the beat down over the past 12 weeks. We are definitely on track for him to feel great by surgery – but it is a weird limbo to be in where he is feeling better but still needs to be very careful about not getting sick and let his body continue to recover. However, this has afforded us some more “normal” types of days which has been great for both of us. The other thing that this “limbo” has created is an opportunity to take a deep breath and realize what the heck just happened for the past 3+ months – and more importantly – start to figure out what lies ahead and get our heads wrapped around the new normal.  Admittedly, we had to make decisions, and move fast so I don’t think we processed a lot of what happened. These waves of emotions are just starting to hit and it is a lot to process while still trying to keep our heads in the game and prep for surgery and the likelihood of more chemo. So despite us not being in the thick of chemo, or yet at surgery it’s still a day-by-day process, but we’re doing the best we can :) More to come…

We’ve had quite the rollercoaster the past couple days – and took a break for a few days from blogging for reasons which I will explain shortly…So what have we been up to? Wednesday I worked and had a bit of a last minute rush of getting us packed up and ready to go for Thursday so I was a bit all over the place. However, Wednesday we were still on cloud nine with our news from Tuesday so we were especially excited to go home for the holidays.

Thursday morning we headed up to Milwaukee, which was one of the best feelings in the world. I haven’t been home since September – we went right to my parent’s bookstore and once I walked in, heard the Christmas music playing, and saw customers bustling about it officially felt like Christmas. My heart was calm – we’ve had some incredibly long days and nights through this and I had been envisioning Christmas at home to get me through some of those tough days. However, this is where our holiday took a bit of a turn – our oncologist called around 1PM on Christmas Eve – and quite frankly, I wish she had waited to call us until Monday. We got some unfortunate news – the final test result we were waiting for confirmed that there is possibly still active cancer in Tom’s tumor. So while it shrunk significantly, and the surgery is now much better than we expected….there is a higher chance that we will need to do more chemo after surgery which is exactly what we didn’t want.

So how do we know this? There is a blood test that measures Tom’s tumor markers which help detect and diagnose certain types of cancers. The number has steadily dropped throughout chemo, but unfortunately the number is still outside of the “normal” range which is correlated to cancer still being present in his body. There are no words to describe how we felt after this call…the wind was taken right out of our sails. Suddenly the chance of finding out at the end of January that he’s cancer free was potentially moved to March/April. Tuesday was the highest of highs and then suddenly Thursday was back to one of the lows. Plus, we were so excited for the holidays and my family was so excited to see Tom too – so at some level we were trying to just keep smiling despite a crushing blow.

Christmas Eve and Christmas Day were nice and we continued to try to stay positive. It was my nephews first Christmas which was super fun (see picture of him & I in front of the tree) and we got to spend the day with family and around good energy. So given the news we figured we wouldn’t post anything until today to keep the holidays positive. We’ve come so far, we will certainly continue to fight this as best we can, but I certainly will admit this has been tough to swallow. We are planning to do what we’ve always done and stay positive and deal with facts, so while our road has gotten a bit longer we will figure it out along the way and try to our best to stay positive and still kick cancer’s ass.  I figure this post needs to end on a positive note so I hope you all get a kick out of one of Tom’s Christmas presents from me….a Chia pet – so he can race his Chia in hair growth ;-) More to come…

What a morning we have had – I know I usually post at night but I figured I’d post a bit earlier today. I’ll let the punch line right out of the bag – the tumor has shrunk much more than they expected!! We were up at the crack of dawn this morning anxious for our appointments. I was a hot mess – by the time we got to the surgeon’s office I thought I was going to throw up. Tom was actually much calmer than I was - I was staring at the shadows that appeared by the door when people walked by our room and got eager if I thought it was the doctor.

Once he came in we got the great news that it has shrunk way more than expected! Now there is still a mass there but it shrunk in a way that it is no longer touching his heart which is so important for surgery. Our surgeon is so happy with the results and the surgery may even be less invasive and will be done at our local hospital now rather than needing to travel for surgery. This is HUGE for us. This surgery is still going to be quite a doozey but the fact that we no longer need to have the bypass team on call and don’t have to mess with the heart increases the success rate of this surgery big time. Plus, given the size of the tumor the surgeon will try to make fewer, less invasive, incisions to get this out. If he is able to do so it will dramatically improve his recovery time. However we won’t know that until they are actually in surgery.

Then we met with our oncologist who was equally excited for us and walked us through all of the actual scans and size reduction. Then, we went over what Tom can and cannot do and one of the best parts of his day was finding out he could eat sushi again – yes, totally crazy, but something Tom was eager to have again and has been craving. So we are celebrating tonight with some sushi for dinner for him. It’s the little things!

We were honestly both in shock today – it feels like all the sleepless nights, pain, nausea, and emotions have actually all been for something. We still have to process this all – but we both have smiles on our faces today :) 

So while we had great news today we won’t really know our status until after surgery. While the tumor has shrunk – it doesn’t necessarily mean there is no active cancer. Two things can happen after surgery:

1. They remove and inspect the tumor and determine that there is no active cancer and he is considered cancer free. If this happens then all we have left is the surgery recovery.
2. They remove and inspect the tumor and find active cancer cells and then, unfortunately, we would have two more rounds of chemo

We are hoping for #1 with every ounce of our being. Statistically 30-40% of people end up needing additional chemo. However, we will deal with that when it comes – and Tom has beat every odd so far so I’m cautiously optimistic that we will be cancer free after surgery. For now, we get ready for surgery and do what we need to do within our control.
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Surgery will be on January 19th – this is for several reasons – the most important of which is that Tom’s body needs to recover as much as possible before surgery so he can handle recovery. More to come this week as we continue to figure things out and process it all. But, we must say thank you to everyone for all the prayers, good energy and love that have been sent our way – we know for sure that we could not have gotten this far without everyone’s love and support. I don’t even know what else to say today…so more to come tomorrow…

Well - scans & tests are complete! We had quite the day of chaos, but we made it through. I of course was attracting every weirdo in the waiting rooms (story of my life), including an old couple who thought that Steve Harvey was OJ Simpson, thought Donald Trump running for president was a movie preview and giggled at a viagra commercial.  Then there was a woman who kept telling Tom & I that she smelled like pasta sauce, and then of course a woman who wanted to celebrate with me every time she took a sip of her pre-CT cocktail. The good news is all these people kept the day interesting for me. 

We were up before the sun and at the hospital for our day of fun. We started with the MRI... once that was done Tom had to drink his pre-CT cocktail and they can't do the CT until an hour after the drink is consumed so we had to sit in this waiting room along with several other people who were drinking and waiting like us. Think of an incredibly awkward bar - and that's where we were trapped except with way uncomfortable seating and no juke box which was unfortunate because I think Journey's "Don't Stop Believing" would have helped the whole waiting room have more fun.  Once the time had passed, they took him back for the CT. Once that was done we had to go up to the oncologist to do some extra blood work. Our oncologist called us on Saturday concerned about some of Tom's counts so we had to go and do another check. Essentially the blood thinners made his blood too thin - or, Tom was being an overachiever. So we had to get that all checked out - that was another waiting room, another blood test, and another wait for results. Blah. 

Our last adventure for the day was his pulmonary test. There is a chance they will have to remove a part of Tom's lung in surgery, so they have to do this testing to see how much they can take - if needed. That required him to do these different breathing tests for an hour or so. Quite the day of fun which was topped off with a trip on the "Care Cart" which are these little hospital golf carts that we've never been able to ride yet. For the kicks of it I took a time lapse video of us cruising through the hospital. The video is especially funny during the part where we almost got in an accident with another Care Cart driver (I stand firm that we had the right of way)!

We made the most of our day at the hospital but we are eager to go to sleep because tomorrow morning we will spend several hours with our surgeon and oncologist to find out all of the results. It goes without say that there will be more to come tomorrow....

We’ve got lots of eves this week – tonight is Scans Eve! We will be up bright and early tomorrow to get to the hospital for quite a few tests. We kick off with the CT, then right into the MRI, and then blood work. Then we should in theory have a little break to go home and then we will come back in the afternoon for a pulmonary test. I say “in theory” because usually this stuff moves at a snail’s pace and is lots of waiting and moving around to different waiting rooms. So we are planning for a long day and setting the bar low in assuming it will take up most of the day…and will be delighted if it doesn’t.

Tomorrow is a bit of a tease because we will not get any results, but step one is getting the tests done and that’s what will give us all the answers we need on Tuesday. Which brings me to Monday night – Results Eve! I will be shocked if I sleep much tomorrow but we’ve got appointments with both our surgeon and oncologist all Tuesday morning. Thank goodness I managed to finagle all the morning appointments, otherwise that would have been a long morning waiting to go find out the results. Tom is feeling alright, still not quite where he would like to be but he's starting to get more color and be more active which is great. As you can imagine, he's equally ready to get these tests done and get the results.

Wednesday night is Going Home Eve - another night that I anticipate little sleep! Tom and I rotate holidays so it is our year to do Christmas with my family in Wisconsin. When Tom was first diagnosed we didn't even know if we would be able to be in Wisconsin, if he would be in chemo or how he would be feeling so I didn't get my hopes up too high. However, since he is feeling better we will be heading home for a very brief trip, but a trip none the less. I haven't been home since early September and with everything I've been dealing with that has been an especially tough part of this all so I'm super super super super super excited. 

Then of course Thursday is Christmas Eve! It will certainly be a low key Christmas but I'm looking forward to Christmas and all the traditions that come with it. So lots more to come this week...stay tuned :) 

Today is just one of those cancer days. Not because we got bad news or had an unexpected trip to ER because none of that happened. We are just worn down from this cancer fight and we are in this limbo that is brutal. Typically, we would know that we are four days away from his next round of chemo and know the plan. Now don’t get me wrong, we are thrilled that we aren’t starting chemo again next week, but this unknown has just been tough and emotional and quite frankly draining. We are looking forward to getting more of a plan next week after scans but even that will only be one piece of the puzzle because the surgery is still a large unknown – one that will involve mid-surgery decisions so we truly cannot prepare. But, we will continue to get as prepared as possible. We met with one of our oncologists today and Tom had blood work done – everything looked good so that is great news as we go into next week.
 
Yesterday marked three months since the his diagnosis and as I told Tom today I feel that we are entitled to have some rough days. However, our rule through this whole thing has been to not dwell and always try to have a better day than the one before. So on the positive side, we are getting out some bad days now and trying to just stay optimistic and look forward to results and Christmas next week. More to come…

Well, let me start with some great news. Tom started to turn the corner last night and managed to not need any of his really strong anti-nausea medicines today. This has certainly taken much longer than previous rounds of chemo, but we are thrilled that he is finally starting to bounce back. We were hoping he would so we could make a special little adventure this evening :)

As I’ve mentioned before, Tom is incredibly lucky to work for his company. He has the most wonderful group of coworkers that have been some of his biggest cheerleaders and have continually offered their support to both Tom & I – not to mention they are avid blog readers! They are truly a special group of people that I’m sure many would hope to experience in their careers. Tonight was their Christmas party and they invited Tom – and I – to come if he was feeling up to it and take part in the annual celebration and Secret Santa exchange. Tom was hoping he would feel well enough because he truly misses his coworkers and all of the fun banter in the office. Some days this diagnosis can feel incredibly isolating, so he was eager to see everyone and catch up on everything he has been missing. To be fair to our day – to – day experiences, Tom was a little apprehensive to attend because of his hair loss, but as I had assured him, his coworkers thought nothing of it and agreed with me that he is rocking the bald head look.

As we have coped through this entire diagnosis there are certain things that put in perspective the amount of time that has passed. The VP that Tom works under is retiring at the end of this year and when he returns to work she will already be gone. On September 15, when he left work, it never even crossed his mind that it would be the last day he would work with her. Truly, you never know what can happen or how quickly life can change. The day Tom was diagnosed, I had called his VP to fill her in on what was happening, from the moment I told her what was going on she assured me that she, and Tom’s boss, would do everything in their power to help us and support us through this entire endeavor. Tom has learned an incredible amount from her and is very sad to see her go, for him it will be a bit strange to go back to work (though he is eager to do so), but especially weird for her not to be there. We wish her all the best and fully intend on celebrating with her when Tom is officially cancer free :)

Nights like tonight are reminders that despite an incredibly crummy situation, we are surrounded by so much love and support. I know I’ve said it before, but there are days where it is very overwhelming – in the best way possible. Tom’s boss gave a toast tonight and was commenting on friends, family and how much time coworkers spend together – sometimes more than with their own families. I would say Tom is incredibly grateful to have such an amazing work family. More to come…

​I've been a bad blog host the past few days! My apologies :) Life has been a bit crazy with the holidays coming up and work etc. On top of that, Tom has really not been feeling well. He's not bouncing back at his usually speedy rate and feeling fatigued and still needing medication. Usually as we turn the corner into Week 3 he is off almost all of the anti-nausea medicine and we start a week of as-needed medicine only. However, he is still needing the medicine and resting quite a bit. Rest is good because his body is working hard, but usually he's not needing to rest as much at this point. But this isn't anything we didn't expect since our doctors warned us that the compound effects of the four treatments would be especially tough this time. 

Needless to say, he's getting a little restless and wants to speed up to next week so we can get results! This week will be relatively calm, he will have blood work on Thursday (fingers crossed we don't need a transfusion!) and we will meet with one of our doctors too. We really are just marching towards the 21st & 22nd. Best case scenario this week would be that his blood looks good so we can maybe schedule the surgery next week. All good energy and prayers sent our way would be appreciated so he starts to bounce back this week! More to come...

Now What?
That seems to be the question of the hour - so let me give a quick update. When Tom has his chemo treatments - meaning we are in the hospital and he is on the constant IV - that is just his chemo infusion. His actual treatment cycle is three weeks which is why we had chemo every third week. So while we are done with his chemo infusion (WOO HOO! Still very excited about that!), he is still technically in his fourth cycle of chemo and the drugs are still in his body and hopefully working their magic. I say all that to say that we unfortunately don’t know the impact yet that chemo has had on the tumor. We continue our normal routine with blood work tomorrow and next week and then we will be doing the scans on the 21st and find out the results on the 22nd.  The scans will ensure that the cancer didn’t spread at all and determine how much the tumor shrunk – if at all. That second part is very important because that is really going to determine how rough Tom’s surgery will be.
 
When Is Surgery?
Our other money question – when is surgery. Surgery won’t be scheduled until (1) the scans are complete and we can get a plan of action (2) Tom’s body bounces back. As our oncologist told us, this is a huge fight that Tom has ahead of him and it will be critical that he is as close to 100% as possible. Plus, in my dream world we find out on the 22nd that it’s completely gone and there is no surgery. I’m ignoring the less than 1% chance that it could happen. A girl can dream! In all seriousness, the best Christmas present ever would be to find out when surgery will be at our appointments on the 22nd. 

So it's a bit of a countdown until the 22nd for us now, we will just rest easier knowing what we are dealing with and when we can deal with it. It's painful to have to wait, but it's only 13 days away and I bet that will go faster than the last 20 minutes of chemo did on Sunday :) In the meantime, we will keep you updated as we always have and continue to blog as we get more information. Don't worry, I'm not done with all my rambling yet :) More to come...

I think it's safe to say we haven't had the best luck lately! However, today we caught a bit of a break, or at least we think it is considering the past 12 weeks of our lives. We were up all night because Tom was in an incredible amount of pain in his lower back area - he couldn't get comfortable, the medicines weren't helping and he was only able to doze in and out a bit. Knowing what I know, and what I've been told to look for, my mind immediately went to kidneys and I assumed it would just be a matter of time before we were heading back to the hospital. I called the oncologist and talked to them and they told us we were okay! The aches/pains he was experiencing is a common side effect with the booster shot he gets the day after chemo so we were in the clear. For the record - that is the first time we've had an "issue" that hasn't resulted in us being back at the hospital. Woo hoo! Okay, in all reality it's about as exciting as finding out Kohl's is having a sale, but we'll take it. 

Needless to say, a sleepless night is setting us back a bit in regards to exhaustion but I'm just happy he is okay and thankful for heating pads! We are off to catch up on some sleep, but more to come...

Home still feels wonderful :) We are still catching back up but are so happy to be home. We were back at the hospital bright and early for Tom’s booster shot which will hopefully help make him bounce back faster. It’s unbelievable how walloped he gets and the impact it has on his body these few days post chemo. He will breathe hard if he walks up from the basement, or get fatigued if he stands for brief periods of time. However, the greatest part this week is knowing this is the last time he will have to feel this! It makes a world of difference to know that this is the last time we will have to deal with chemo symptoms, managing post chemo drugs, and that we won’t have to start to mentally prepare for chemo again. Amazing. For the most part, he is feeling pretty crappy which we expected. This round has been especially challenging because he is really feeling the impact of the compound effects, but like every other round he's got his eye on the prize and is being so strong.
 
I’m simply exhausted. A different type of exhausted from Tom, but exhausted nonetheless - it feels like the last 13 weeks all hit me at once today (which almost resulted in a meltdown at the grocery store this evening) so I’m going to keep tonight short and try to catch up on some much needed sleep :) More to come…

I really don’t even know how to write today’s post. Today has been an incredibly emotional day – but an amazing day. First things first, HAPPY BIRTHDAY to my wonderful husband! I wish we had been able to celebrate more, but considering our situation we did celebrate quite a bit! Tom was up bright and early getting sick so our day started sooner than expected. The nausea and getting sick has been especially rough this round so these last few days have been rough. Tom said that since essentially mid-Wednesday he has been focused on not puking – a lot of which is mind over matter. Even our doctor has said a trick to beating nausea is mind over matter, but unfortunately there are points at which it is too much.

Despite a rough way to wake up I had a gift and two cards ready for him next to his bed for when he woke up. Once we got him all settled in again he opened up his gift and started feeling better. Then, our amazing nurses and doctor came in and sang with cupcakes they had made for him, sparking grape juice for a champagne toast (in foam cups - classy!!), a card from the team and a funny picture. Ironically, the younger sister of a friend and bandmate of Tom’s from highschool was one of our nurses. She went into her brother’s vault of photos and had some funny embarrassing photos of Tom from his younger days. I know I’ve mentioned this many times, but we have gotten quite close with a lot of our nurses and doctors so it really was so overwhelming and kind that they all coordinated a celebration and even baked for us.

We were on target to leave at 2:15 based on his final drip of medicines. 2PM felt like an eternity away – the celebration with our nurses helped pass some time and then I knew that some of Tom’s family was planning to surprise him with a quick celebration.  They came up with some cupcakes and visited for about a bit which was a great way to celebrate his birthday too – and help pass more time! I curled up in the tiny hospital bed with him for the final 20ish minutes as we stared at the IV pole and painfully watched the IV drip. Then….it beeped…and we could not have been happier. Back on September 16 we never thought today would come, and then suddenly our lives are a blur and we are here. Our nurse was ready to go, got his port needles out and we got the heck out of there after a few more goodbyes.

We were both crying by the elevator and cried most of the way home – we aren’t ashamed to admit it. It’s the strangest, most overwhelming, confusing, exciting feeling in the world and it was like our minds froze and didn’t know how to react. As we got home and kissed the floor we had a giant stack of cards for his birthday/end of chemo in addition to some other gifts and packages. We actually didn’t open them right away because we knew they would be quite overwhelming. We cleaned up – yeah for normal sized showers – and got ourselves situated and then spent time opening all the love :) 

In regards to his health, Tom’s blood did not look good  today– his white blood cells (the ones that fight infection) are the lowest they have been this entire treatment which means he needs to steer clear of crowds, handshakes, kisses and general contact. Our doctor was very clear that we need to be very careful as he rebounds this time and gets ready for surgery. Tomorrow we will be back at the doctor for his booster shot and then he will be laying low and trying to recover. I really don’t think it has hit me yet that chemo is over, but I actually don’t think it will sink in until we don’t have to go back in three weeks.

I am so so so so so so so proud of Tom – this hasn’t been easy – though he made it seem that way. This is just part one, but based on how he crushed part one, I have so much confidence that we will be ready to beat part two. More to come tomorrow…

Tom. Has. Finished. Chemo.  What an emotional day for us! First of all, let me just say my husband 100% rocked this treatment. I am in complete amazement at his attitude, strength and humor through this all – we have had some tough tough tough days here but he continued to power through as best he could. Tom was sick during the night and woke up feeling quite rough. Enough that he actually was taking another, stronger, anti-nausea medicine in addition to what he was already taking. We were super excited when the last bag started to beep (the ONLY time I’ve been happy to hear that damn thing beep) – our nurse came in and took down the bag, and then we celebrated (see picture).
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It felt a little anti-climactic that we couldn’t get up and walk out of the hospital but who cares – CHEMO IS DONE! There were some happy tears but despite all that excitement he continued to throw up this afternoon and was feeling pretty rough and still isn’t feeling great. Luckily, he’s  been asleep since for awhile so hopefully all the rest tonight will do him good because tomorrow is his birthday! Unfortunately, we won’t be doing much for his birthday. Typically on our discharge day we are here in the morning, get discharged early afternoon and then we get home, he takes a shower and then he is pretty much out for the rest of the day. But that’s okay – we will just celebrate on a bit of a delay when he's feeling better. 

Our oncologist  was excited with us too! She has been so incredible and we are lucky to have her. While this is a huge milestone – we do know that it is just the first of two huge steps in becoming cancer free. Next up is surgery and we know that is an even bigger mountain – but we still need to celebrate this one – and she agreed!

We were thinking back today and counting silly things so without further ado chemo by the numbers:

• 1 Port Surgery
• 20 Chemo Treatments.
• 24 Nights in the Hospital.
• 2 Blood Transfusions.
• 60 Bags of Chemo Drugs.
• 4 Cafeteria Loyalty Cards Completed.
• 4 Different Rooms
• 1 ER Visit
• 30+ Doctors’ Appointments
• 20+ Games of Uno (Most won  by Honore)
• 2 Business Ideas (I’m confident we will be on SharkTank one day)
• …and a partridge in a pear tree.

There are plenty more things we could count, but it’s amazing to think about how far we’ve come. We would not have been able to do this alone. We just want to say thank you to everyone that has helped us, stopped by for visits, stopped by with food, sent us messages, cards, prayers, and care packages. You’ve helped us get through this first major milestone and we know you’ll be there as we start the next part of our fight. I mean it when I say we feel all the love, energy and prayers that have been headed our way - we are so so so so so so so lucky and are forever in your debt! More to come tomorrow... 

If there were cameras in our hospital room – I would be a YouTube sensation. Last night after I posted on the blog I was watching the end of the Packers/Lions game as I got curled up in my bed made for people that are five feet tall. I love my Packers – and our season was getting a little frightening and this was a must win game. So you can imagine my mood when we were getting beat 20-0 but then we slowly started to creep back into the game. Now Tom had been sleeping for quite a while at this point so I was here in a dark hospital room watching the game. I challenge anyone to watch the ending of that game and not SCREAM with joy  - I almost imploded (It’s like trying to sit still during Beyonce’s Single Ladies – not happening).  Instead of screaming and waking up not only Tom, but the entire floor, I proceeded to silent scream and jump up and down like a crazy person with no one to high five. What a game!
 
So anyway, Tom and I were discussing today the different chemo cycles and decided if we had to give each one a tag line they would be:
 
Chemo #1: What The Hell Is Happening?
Chemo #2: Blood Shouldn’t Clot.
Chemo #3: We’ve Got This – and Luxury Accommodations!
Chemo #4: Are We Sure There Is a Battery In That Clock?
I anticipate that the surgery tagline will be: Morphine.
 
These different cycles have certainly each been unique in their own way. For those that know Tom well, he picks up on things/processes quick. He knows exactly what happens and has even helped guide nurses that were training on his chemo. Hilarious. Speaking of the nurses, our day shift got giant tower of cookies that we sent them this afternoon and they all loved them. Then this evening we gave them a big popcorn tin that Tom’s Mom and Aunt had got them too – I’m a little worried they are going to like this too much and try to keep us here longer!
 
Unfortunately, Tom had an rough day and evening. He was throwing up again this evening but we were able to get him some more meds quickly and he has been sleeping pretty hard ever since. At least when he is sleeping he doesn’t feel the nausea, even if it takes strong medicine to do so. However, tomorrow is HIS LAST CHEMO!!!!! I’m hopeful that keeps spirits high throughout the day and then we can start our countdown to home. I don’t think he really counts chemo as being “done” until we are on our way home but I’m going to celebrate it either way – and I still have some of that Packer celebration to let out :) More to come tomorrow! 

​Okay – first things first. Despite what my crazy blog is doing I do not have chemo confusion. Chemo confusion is a real thing (much like pregnancy brain) and the regimen Tom has can make him easily confused or forgetful. He’s joked quite a bit when he does something silly that it was just chemo confusion. Now I’ve got quite a bit on my plate right now so I have jokingly referred to my own made up caretaker chemo confusion several times when I’ve got too much happening at once and do something goofy (like when I looked for my cell phone for ten minutes and it was in my hand). Anyway, this afternoon – I got a text from my cousin asking if I had chemo confusion because yesterday’s blog post said 12/4/2015 – which obviously isn’t until tomorrow. For the record the site auto populates the date so I don’t have a case of (caretaker) chemo confusion. Meanwhile, Tom has been pretending to play his chemo confusion card today by asking me what the Packers record is and what happened during the Bears/Packers game last week. I don’t think he appreciated my packer sweatshirt for the game tonight - nor did it probably help with his nausea. Long story short - the blog has been a bit goofy on the technology side - my apologies! 
 
Anyway – on to more important things – we are over halfway done with our last chemo!! Tom rocked session three today but is feeling pretty rough. Last night was tough too – I was up quite late and as he was sleeping he was making noises and sort of mumbling in his sleep which led me to believe he was in pain. He said he doesn’t have much recollection and luckily isn’t in pain, it’s just the nausea he’s dealing with. It’s tough to have to sit and watch someone you love be so sick and really feel helpless in being able to do much for him to relive the nausea.
 
Despite that we had some fun today too – for those that know my mother-in-law you know she loves Christmas. I mean loves it on a whole other level. So today, we got a floral delivery and sure enough she sent us a baby Christmas tree for the room that even came with lights and ornaments to decorate it with since she felt it needed to be more festive in the room – it added a nice glow this evening as you can see in the picture. I won’t do a close up of ours versus how it’s “supposed” to look – it would be FAIL worthy due to my tragic light and ornament placement.
 
Then tonight we coordinated treating the nurses to some dinner! A special thank you to my sister-in-law and brother-in-law, my brother-in-law is a proprietor at Outback Steakhouse and was kind enough to bring up and treat the staff to a whole spread of appetizer’s for everyone to share and enjoy. The nurses were so excited and very thankful – one even asked what the name of one of the appetizers was because she wants to go get one at the restaurant :) We’ve got some different treats coming for our day shift tomorrow too. I had a hard time figuring out what to “get” our nurses as a thank you this week so we figured treats and thank you cards will have to do the trick for now. If I had millions and billions of dollars I would do something completely over the top, but even with all the money in the world there wouldn’t be something that would adequately thank them for everything they have done for us over these four rounds of chemo. It’s something money could never buy.
 
So I think it’s safe to say we are in our final countdown! 2 days of chemo to go and 3 nights in Hotel de Hospital….More to come tomorrow…

​What a Day. It’s 1AM and I shouldn’t be awake so I’m going to try to keep this one short tonight! This morning we started our day by saying goodbye to one of our favorite night nurses. She is off for the rest of the week so last night was our final night with her – she was standing at the foot of his bed at 6:30AM this morning to say goodbye. She, like Tom, is a huge Cubs fan and they bonded over the playoff run and he loved her Cubs scrubs! She had some incredibly kind words for us and wanted to be kept in the loop on his progress. She is a wonderful nurse and we were lucky to have her the nights that we did – however, I’d be lying if I said a 6:30AM goodbye didn't catch me off guard – even though we were awake I wasn’t expecting it. As excited as we are to never return to this oncology unit – we will miss the people so it creates quite the swirl of emotions and no one likes to start their day choked up!  
 
Tom is feeling pretty rough today and a bit disappointed with how early the fatigue and nausea has set it – he is such a champ and I’m completely amazed by his strength but you can tell this round has already been especially tough on him. We only have three more days of chemo to go – so incredibly close – yet so far! I thought this last round would feel much faster due to our excitement of it being the last one but it has been a bit of the opposite and seems to be dragging a bit. Oh well – we carry on and keep working towards Sunday – his birthday and discharge day! Tom will have a bit of an unfortunate birthday because it is one of his absolute worst days, but I told him that if one crappy birthday assures us that he celebrates many more birthdays to come then in a backwards way it’s the greatest gift. Plus – he’s thrown up on his birthday in years past for much stupider reasons ;-)
 
So, fingers crossed that tomorrow isn’t too rough on him and we will be halfway done with his last round! More to come…

So begins our LAST ROUND OF CHEMO! It’s always a bit of a strange ride to the hospital when we are headed in for treatment – it’s rather somber and the week seems like a steep climb. Ironically, on the way in we heard a story on the radio of a husband planting sunflowers in honor of his wife who lost her fight with cancer. It’s the sweetest thing and you can read more here – be careful with the videos, they make me cry. http://abcnews.go.com/Lifestyle/wisconsin-man-plants-mile-stretch-sunflowers-tribute-wife/story?id=33139867

Anyway, we were especially curious about how this week would go considering how weak his body has gotten and how it’s been harder to bounce back. So we headed in and our moods were instantly lifted seeing our friends here at the hospital. From our transport guy to our nurses and support staff everyone was eager to say hello and were all equally excited with us that this is our last round of chemo. We are back in one of the smaller rooms because the oncology wing is completely full – but it’s sort of like finishing off where we started so I’m all good with the cozier room.  

We did the usual prep and got things moving right along for the week. Tom’s blood work was done and he’s continuing to kill the cancer which is super important before surgery – all good news! However, unfortunately he started to “feel” the effects of chemo this evening. Day 1 is by far the earliest he has ever felt sort of weak and tired from chemo – we’ve typically been able to get to Day 3 or so before this point but it’s to be expected given the treatment. So we hunker down for a challenging week – but at least we know it should be the last one. More to come…

We hope everyone had a wonderful Thanksgiving! We had an eventful few days – including a blood transfusion yesterday at the hospital. It went very well and most importantly, relatively quick! 3.5 hours for the whole check-in, prep and transfusion. In Blood Transfusion time (sort of like dog years) that’s pretty good! However, he still was feeling pretty fatigued and exhausted in the afternoon so he rested up since we’ve got another week of chemo ahead.

Today we relaxed and started to get ourselves ready for our LAST round of chemo. This included putting up some Christmas decorations. Now originally Tom didn’t want to put up any decorations because of how crazy December will be and the upcoming surgery, but I think it’s important to keep life as “normal” as possible. Plus – he loves Christmas – and for as much as he has been stuck in the house I think he should have some good Christmas juju around him. We compromised and I didn’t put up all of the decorations -just the tree and some garland – but I think it’s pretty even if the rest of the house is not as decorated this year. As I was putting up decorations we were chatting about how hard it is to believe it’s almost December. In a strange way, it feels like our lives are back in September. Yes, we know time is passing, seasons changed and life has been happening but there is a part of us that still can’t comprehend all that has happened. That will come with time but in the meantime we will try to spread some Christmas cheer.
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Tom is excited for two more “good” days before we start chemo again on Tuesday, as am I. More to come…

We had a wonderful Thanksgiving that included an attempt to sleep in – I made it until 7AM! We had a lazy morning and were able to relax. Tom and I flip flop holidays and this year was our Thanksgiving with his family and Christmas with my family which worked out well with our current situation. We were able to go over to his Mom’s house for Thanksgiving – and as usual – my in-laws hosted an awesome Thanksgiving with lots of yummy food.

Like most families we go around the table and say what we are thankful for and the very thought of describing what I’m thankful for had me choked up. Luckily, crafty Aunt Paula incorporated a pack of tissues into the placecards – she’s so damn clever! Needless to say, the tissues were used!

Well. What are we thankful for this year? I blubbered a few things at the table today as I tried not to cry but in all honesty I think I could write a list that lasts for days. In our attempt to really think about what we are thankful for we pulled together some things we are especially thankful for this year, in no particular order, and of course not all inclusive. But a few sentiments for this Thanksgiving:
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1. Our Nurses/Doctors/Technicians/Hospital, Office & Clinic Staff: The patience of these folks is truly remarkable and there are people in the world who have truly found their calling. It has been incredibly powerful, and a privilege, to be around that type of energy for the past two and a half months.  A handful of these people have become like family during this and we are forever grateful.
2. Our Family: You never know the power of your family as a unit until you are in a time of crisis. Our families have been our strength on rough days, smiling faces and shoulders to cry on. Whether it is in person, a care package, a message, FaceTime or any other means of communication it has been remarkable. Love and gratitude doesn’t even begin to describe this feeling.
3. Our Friends & Support Network: We have had support at every turn, from every imaginable person we know. The outpouring of love and support at times would overwhelm us to the point of tears because we feel there is never a way to repay all the love that we have received. From people helping us with referrals, meals, cards, etc., we are forever in your debt.
4. Our Marriage: When we got married three years ago I never thought we would be spending days on end with each other holed up in a hospital room, or our house, or me being a primary care taker. I am so thankful that we have the marriage, and partnership, that we do. Tom has not let more than a few hours go by without thanking me and we’ve actually had quite a bit of fun despite our situation. We are stronger for it, and for that I can’t be anything but thankful.
5. Humor: We truly believe laughter is the best medicine, and I believe that mindset has helped us get this far. Some days I think our humor made this seem easy – though trust me it’s quite the opposite. I also think you get back what you give, and having a positive mindset made it easy for our doctors and nurses to communicate with us in the same way.
6. Science & Medicine: Tom has said it repeatedly, but thank goodness he got cancer in 2015. I have been blown away by the power of the human body and all that it can do/tolerate in addition to the medical capabilities that support it all. We are not foolish to think cancer free means this will all be over; in the years following his “all clear” there will continue to be many scans, and tests so we can avoid a situation like this again – and we plan to have many thankful days of clear scans ahead.
7. Our Employers/Bosses: We both work for two incredible companies that have shown us such grace during a dark time of our lives. Tom’s company has been absolutely amazing and supportive while he has been away and constant cheer leaders for him and making sure we have everything we need. My company has been equally phenomenal and provided me with flexibility and support that has rendered me speechless at times. I’ve continued to work full-time throughout this entire endeavor, but working for an organization like mine that knows the importance of family, and being present for your family is an incredible gift.
8. Rough Patches of Life: Let me be clear – I wish that Tom didn’t have cancer. However, this diagnosis has given us more than it has taken away from us. Many people say “Seize the day” or “Live life to the fullest”, but not often do people live that way. We are forever changed. At the age of 28 and 30, in a matter of hours, our lives were literally ripped from us and months of intense, scary and life limiting events followed. We will never be the same – and I know we will live life differently for it. I wish it wasn’t at the expense of Tom having to go through this – but we are forever grateful for our new perspective of our lives.

Our hearts are so incredibly full - we wish you all the happiest Thanksgiving…

Well. Usually I avoid holiday crowds, meaning I don't do the shopping during peak times, etc. However, I didn't realize that going to the cancer clinic the day before they are closed  for two days was such a holiday mess too. Add that to the list of things to avoid in the future - along with cancer in general.

So our appointment was a bit of a nightmare this afternoon. Here's a tip for everyone - ALWAYS get the earliest appointment available with any sort of specialist otherwise they get behind. Usually I get the earliest appointment but given the holidays this was the only appointment they had. So after we were sitting in the waiting room for 30 minutes I went to the counter and made sure there wasn't an issue - nope, the doctor is just running approximately 50 minutes behind. Oofta. So  we finally saw our doctor an hour and twenty minutes after our appointment time. Now we certainly are patient people, and understand that emergencies happen (in fact Tom has been the emergency before so we are especially forgiving) but today was especially challenging. It's tough to be in the waiting room for that long because it's depressing. I'm not exaggerating when I say it was standing room only at some points. The place is usually pretty busy but it was just jam packed today and it's heart breaking to see some of these folks come in - and for us, especially hard to be the youngest and feel like everyone is staring at us.

Anyway, once we saw our doctor (who acknowledged the wait and apologized unlike many other doctors) we did blood work and unfortunately will be having another blood transfusion on Friday. Tom's levels are pretty low and they are trying to bring his levels back up before we start our next round of treatment. So at this point we were circling the wagons at about 2ish hours and then we find out we need the blood transfusion - which we assumed would be the same as last time. Nope - we then had to go to a different part of the hospital to once again to a blood draw (third of the day) so they can match the blood appropriately. This made zero sense to me since we know his blood type but they needed to do it again for a bunch of medical reasons that certainly sounded legit - but was still irritating.  So by the time everything was all said and done I was singing my Gilligan's Island version of our Three Hour (Doctor) Tour on the way out the door. Long day - especially for Tom who had to suffer through my made up lyrics.

The transfusion is less scary this time since we know what to expect, but certainly not what we were hoping to deal with on Friday. However, anything that can help him go into chemo strong will be for the best. The good news is we got all the orders we needed for all his post-chemo testing that is needed before surgery. So while we were doing all this hustle and bustle of waiting for the additional blood work I was multi-tasking and making a bunch of the appointments. It was a bit of a puzzle to coordinate when the different doctors were available based on our time crunch - in fact I called one office a few times to shift things around to accommodate other schedules - but I think we've got most of it figured out for his post-chemo appointments. Phew!

Tomorrow is Thanksgiving, and I've been attempting to write a Thanksgiving post. We will see if I can pull together the emotions to get up a post tomorrow - to say we are thankful this year is an understatement. More to come…

I feel like Cancer is one giant event planning activity – without an open bar. The number of phone calls, coordination, paperwork and sign offs required is mind boggling. Sadly, I know the direct numbers to most of our doctors, our Walgreens, and have sarcastic answers for some odd new patient questions. (I want to find the suggestion box for most of these offices - I've got some serious complaints about the hold music) As we ramp back up for our last round of chemo – I will be in mega coordination mode as we will have several appointments that will be needed post chemo including scans, blood work, lung testing, second and third opinions on surgery, surgical prep meetings, a potential blood transfusion, etc. all as soon as possible so we can get surgery lined up for the beginning of January. Add to that the holiday schedules of many of these doctors and running against the insurance clock and it’s going to be a whirlwind.

We’ve got to move fast so that the cells don’t continue to multiply and that we can get the tumor out and not need more chemo after surgery. In our perfect scenario, this last round of chemo kills all the cancer, Tom has a few weeks to bounce back, and then we do surgery as soon as possible in January to get the mass out. We meet with our oncologist tomorrow and will get a better idea of what we can expect between the last round of chemo and surgery in regards to what testing she will need to do and track. So we are planning to enjoy this long holiday weekend and try to get some rest before what will be a crazy week of chemo and post-chemo activities that will require a lot more activity than Tom is used to in his recovery weeks. More to come… 

Happy Thanksgiving Week to all! Tom is feeling well, but still has some fatigue. We were so happy to have a variety of visitors stop by this weekend which is great to break up the monotony for him, but it’s amazing how that can also wear him out. But as he says – I’d rather be a little tired and get to see people and have some company.  We are happy that he should continue to feel better, and stronger, this week and start to get more of an appetite – just in time for Thanksgiving!

Two weeks from today we will be coming home from our last round of chemo. 14 days to go! We are so excited! Certainly it’s not the end of the fight, but a huge milestone that we are going to continue to work towards and of course celebrate. This week should be relatively calm, we meet with our team of doctors on Wednesday because of the holiday schedule and are hoping that he won’t need a blood transfusion, especially because the clinic is closed on Thursday and Friday. So we head into this week with a positive and thankful mindset...More to come...

Tom is feeling much better! Tuesday night he started to turn the corner and yesterday was feeling much better. Today was even better than yesterday and so begins his climb back to feeling “good” for a few brief days before he gets hit with chemo again - for the last time!

Tom had blood work today and though his numbers were cutting in SUPER close, he did not need a blood transfusion. I wouldn’t be surprised given his numbers if he will need one next week, but for now he’s thrilled we didn’t need to do an infusion tomorrow. We’ve got some visitors coming to see us this weekend because he’s feeling better which will be great and keep spirits high – this whole diagnosis/treatment can be incredibly isolating – especially when we have the added issue of flu season approaching. Then we’ve got Thanksgiving next week for which I will probably have a sentimental holiday post. Consider yourselves warned :)

So…fingers crossed we keep our momentum going and can get him as strong as possible before this next round. The stronger he is going in, the quicker he can bounce back and get extra strong for surgery…More to come…

Tom feels, and I quote, "Better than Monday". He got a lot of color back today and though still quite fatigued, he's starting to feel better. Yesterday was an interesting milestone for us – but one I didn’t mention since we were processing the surgery news. Monday was exactly two months from Tom’s original diagnosis. There are very few words to describe the past two months of our life. How can some hours/days seem so incredibly slow, but the two months as a whole feel like a complete blur? It’s as if we are in a weird time vortex. For me, I’m still working full-time so it’s almost as if I picked up another full time job which is why I think life has seemed so fast. For Tom, I think it’s been a mix of being on all the medications, a blur of appointments and a focus on getting through each day that has made time seem so fast. Late last night I read the blog from start to finish – there are posts that I didn’t even remember until I read them again. It’s amazing how our brains work!

All in all, we’ve managed the past two months the best we could. We’ve had some of the best days together and some of the absolute hardest days together. Two months from now will be mid-January and Tom should be on the road to recovery from surgery and – dare I say – cancer free. So as tough as the past two months have been, we know the next two months will yield much brighter days with happy milestones including the holidays with our families (including a Bears/Packers game on Thanksgiving), the end of chemo, surgery, a cancer-free diagnosis and more. On that note, 19 days until chemo is done. More to come…

We’ve had quite the day. After getting home last night we had a bit of an up and down night, but for the most part Tom is feeling okay. It’s about the same as the last round of treatment – it’s just a rough few days. We got up this morning and headed to the cancer clinic to get his post-chemo shot. We decided today that we should get a plaque in the waiting room (perhaps posed like the American Gothic – see photo) with the tagline that says “Tom & Honore – Bringing down the average age of the cancer waiting room since 2015”. 
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In all seriousness, then our day took a turn. We briefly met with a potential surgeon for Tom, and though we knew this surgery would be quite the endeavor, it was even more than we had bargained for. Granted, it’s only the first opinion, but we do know that this is going to be one hell of a final obstacle to get him cancer free. The doctor was great – and incredibly calming which was needed for us both. There may have been some swear words and elevator cry/tears post appointment, but per our own rules we have given ourselves a little time to react, process, and now we carry on with a plan. We will meet with some other doctors for additional opinions and will fill everyone in more once we have more of a definitive plan of what surgery will entail – but it will likely be the beginning of January.

Coming off of yesterday and into today, I felt like we had turned that final corner and could see our finish line. Today, we feel like someone picked up the finish line and put it back out of sight. Brutal. So today became one of those tougher cancer days, but tomorrow is another day, and one day closer to that new finish line – wherever the hell it may be. More to come…