The good news – we’ve been laughing hard lately.
The bad news – it hurts Tom quite a bit to laugh.
The worse news – I’m funny.

So Tom cracks all his silly jokes – and of course laughs hardest at his own jokes - and then proceeds to keep laughing because it hurts and for some reason that becomes funny...more on that in a minute. We had lots of laughs this weekend and quite an eventful weekend, but we are certainly still trying to figure out Tom's limits. I’d say Thursday night and Friday was the turning point for Tom. Up until then he really needed quite a bit of help (I’ve essentially been functioning as his upper body strength) and that’s when he really started to have some strength back and was continuing to challenge himself to push it a little more each day. I continued to help quite a bit, but I also let him try to be independent where it made sense.

Friday night, we ventured out for one of the first times really since surgery. As I mentioned in a previous post, Audrey, the VP of Tom’s department retired at the beginning of the year. Friday night was her retirement party and Tom really wanted to attend. We originally thought there would be zero chance that he would be able to be there since it was only 11 days after surgery, but since he had turned the corner a bit and had a bit of energy he decided to give it a try. I told him going in, if he could only handle being there a short time that it was okay, I was more eager for him to get out of the house a bit and socialize with people – especially his coworkers who have been rooting so hard for him through this all.

We surprised everyone (except the host who knew we were coming) and they seemed very excited to see Tom. We were able to catch up with them, hear about all the fun Tom has been missing and of course celebrate with Audrey. Also, I got to meet many of his extended coworkers that have been reading along with the blog and had so many kind words for us both. It was a fun hour and a half, but then Tom gave me the look that it was time to go and it was getting close to when we needed to give him his shot so we made our way out. We were about 20 minutes away from home and mid chat on the way home I realized that Tom had dozed off. Considering the last 11 days of his life, that hour and a half took the wind completely out of him in the best way possible :-) Tom is eager to get back to work and we fill find out more about when that will be this week after we meet with the surgeon and the oncologist.

We had some visitors on Saturday which was fun – in the afternoon his cousin and Aunt and Uncle stopped by for a visit. They were quite surprised how well he was moving which was great to hear. Tom hears me say how amazing he is doing all the time, but I think hearing it from outsiders who haven’t been with him constantly is additional affirmation.  Earlier in the day on Saturday my sister, brother-in-law, and nephew came down for a visit which was fun, but a little frustrating for Tom. My nephew adores Tom so he immediately reached for Tom when he got here and sadly Tom couldn’t hold him because of his lifting restrictions and the continued pain from his incisions. Dagger in the heart. We figured out other ways like putting him next to Tom on the couch etc., but Tom is eager for his lifting restrictions to be lifted – no pun intended.

Speaking of, I caught him in a lie today! So I dragged all the groceries in today and got everything upstairs. One of these items was a 12 pack of green tea. Tom can’t lift anything over 8 pounds but he came waltzing into the kitchen wanting to help. I told him I had it covered and to not pick up a thing. As I was unpacking the bags I realized the 12 pack of green tea was in the fridge. It went something like this:

Honore: Tom! Stop lifting stuff! Go sit down!!!
Tom: I didn’t lift it!
Honore: Then how did it get in the refrigerator?
Tom: I moved it with my mind.
Honore: No you didn’t.
Tom: It’s under 8 pounds.
Honore: No it’s not.
Tom: Yes it is!
Honore: (Grabs 12 pack out of the refrigerator, walks it into the bathroom and pulls out the scale)
Tom: (Laughing/In Pain) There’s the stubborn irish wife I love!
Honore: (Puts 12 pack on scale) 13 pounds! Now go sit down.

Remember the laughing part at the beginning of this blog? We were laughing quite hard during this entire exchange and so I think he went and sat down mostly because he made himself hurt quite a bit from laughing. Plus if he had telepathic skills and is just telling me about it now I’d be irritated, he could have helped me a ton with those skills over the past five months! ;-)

So all in all – a great weekend – we are starting to get glimpses of a “normal” life again and it is incredibly refreshing. As I mentioned earlier we have doctors’ appointments on Tuesday morning and will hopefully know more about when we can stop shots, when we will get the port out and get ourselves a plan for the coming year to monitor Tom. We are so eager for these last few steps where we can really start to feel like we beat this thing. More to come…

***I apologize – it seems as if there have been some technical difficulties with the blog and my posts weren’t showing the last few days so I’ll repost them in the coming days.***

Houston – we’ve got hair coming back! Tom’s hair is actually coming back fierce and unfortunately we didn’t time it out well with the Chia race. Tom wanted to hold off on the chia pet until he knew for sure he didn’t have more chemo. However, by the time we found out we were cancer free the top of Tom’s head had some growth.

So the race has started a little late – but the Chia is making up for lost time and Tom is on a mission to get his hair back! Surprisingly, his eyebrows have come back very quick and they were the last thing to go. Our oncologist told us that it’s not uncommon for the texture or color to change, but so far it looks like not much has changed. The color seems a bit lighter to me, but that may just be because there is still so little versus when he will have a full head of hair.
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While it may seem insignificant – Tom is so excited to start to have his hair back because he doesn’t feel like he looks sick, and it makes everything seem more normal. Plus, he’s thrilled that it’s coming back now so he can potentially go back to work with a full head of hair versus the patchiness as it grows back. Beyond the hair growth, life is slowly getting back to normal, in a strange new way. More to come on that tomorrow…

Happy 8 days past surgery! What a difference 8 days makes! Tom is doing quite well and is on the mend. Yesterday he was able to get cleaned up, we reapplied bandages and he is moving around very well. He is still dealing with quite a bit of pain, but that’s to be expected when you have as many large incisions as he does on his chest. Overall, he is such a champ, I’m blown away by his positive attitude and desire to push himself a little more each day despite the pain.

Overall, I’d say we are very happy with where things are at – we certainly had prepared for the worst going into surgery but I don’t think we would be having the same recovery if we knew we were recovering to just march ourselves back into chemo. Admittedly, before surgery we were really on our last leg as it relates to keeping our spirits up and feeling like we could beat this thing. I am so thankful that there isn’t more chemo because we probably would have been expending all kinds of energy just to stay positive. I know we would have found a way – but I’m just grateful that we didn’t have to go down that path.

​I am in complete awe of patients and caretakers who have to fight this awful disease for years - some of which I’ve seen firsthand within my own family. We are not blind to the fact that we only had to deal with the actual active cancer for 128 days, and for that we will forever be grateful. Cancer touching our lives will extend well past 128 days, it will be with us for the rest of our lives. It’s part of our story now, and I know it will shape the rest of our lives for the better. More to come…

Well today was a bit of a strange day – we took off Tom’s bandages – and that didn’t quite go as planned. Tom’s big scar was already uncovered so he has had time to adjust to that, and it’s quite large. However he has had bandages on his side since we left the hospital and had been instructed to keep them on until today. Two of the bandages were covering the holes from where the tubes had been – as I mentioned, these didn’t get any stitches or anything – just random holes in his side. Then, there was a third one that was used for the camera that had helped guide the procedure, have I mentioned lately how insane Science is?

Anyway, the goal of today was to get these bandages off (cue my nurse glove snaps) so he would have a little more freedom in movement and could get cleaned up. I knew better than to have Tom looking in a mirror as I was doing this, so instead I turned him away from the mirror and started to remove the bandages. As I was pulling them off I realized it didn’t matter if we had a mirror or not because Tom had looked down and boom – the reality of this war zone on his chest hit him. I came pretty darn close to calling an ambulance as I got him seated, put a wash cloth on his head, held his head up and made him converse with me to ensure he was staying with me. I think it was a bit much for him to see it all, see blood soaked bandages and reconcile that it was all from the surgery. I'll be honest - it was tough for me to even see and it's not on my body. Needless to say, we took a break after that first bandage removal and will take care of the rest tomorrow.

In a strange way, Tom doesn’t feel like it’s his body he is looking at. He was completely out during surgery and then woke up with this mess of incisions all over him. It’s not like when you break a bone when you are completely aware and can associate the pain with a moment in time. He really can’t, it’s a strange disconnect his brain is having with his body – and I think that was a big part of today. It really put into perspective everything that has happened in the past week.

Speaking of the past week – I have NO idea where the time has gone. If I put myself back to this time last week we were an absolute mess of emotions and nerves getting ready for surgery. Tom is feeling a bit frustrated that he isn’t getting better “fast” enough, but I told him the fact that we are home and that he is on the mend a week after surgery is a complete victory to me. It feels like there is more progress being made when there are these tangible targets in the hospital like leaving ICU or removing tubes, but I really have been amazed at his recovery so far.

Despite his awesome recovery, Tom is feeling pretty icky and still on a heavy medicine regimen, but it’s getting us headed in the right direction where his pain is manageable and he can feel better. I can’t wait for this all to be a distant memory. More to come tomorrow…

It’s been an interesting few days here in our cancer free household. There has been so much to process and all the while Tom is in the first, and toughest, days of his surgical recovery. He is doing incredibly well but he does require quite a bit of assistance in moving around which we expected. Also, our nights have been a little tough because he has to sleep on his back and that just isn’t a comfortable way to sleep – I think we figured out the appropriate pillow situation to get him as comfortable as possible but it still isn’t as natural, or relaxing, as he’d hoped.

Tomorrow is a big day as all of the bandages will come off and hopefully that will help with his mobility a bit. His large incision is already uncovered and very large, but the other ones we will get eyes on for the first time tomorrow and should be interesting since there are no stitches – just holes in his side. The doctor said it’s normal for him to “leak” from these open holes this week. I disagree, there is nothing ever normal about leaking from a hole in the side of your body.  I’ve got a pretty strong stomach for medical stuff now, but this particular situation will be interesting. Plus, I assume if I had two holes in the side of my body red wine would come pouring out, or something green and gold.
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Throughout this experience, there have been many unexpected situations. Yesterday and today was one of those – we both sort of crashed. Between the tension and anxiety of the days leading up to the surgery and then four long days with little sleep and lots of emotions at the hospital we were both just beat. Tom obviously more so because he also has the recovery but we allowed ourselves a few days to just relax, recover, and sleep. I guess I thought we would be running more on adrenaline knowing this was going to be over soon but I think we finally were both able to take a deep breath and we just needed to let our bodies – and minds – recover.

I can’t tell you how many conversations we have had since Thursday about this still not feeling real. I thought being home would help make it feel real, but it really hasn’t. I think over the next two weeks as we get a plan for the future scans, get the port removed, and figure out when we can stop nightly shots then perhaps it will start to sink in. Heck, there is a part of me that still hasn’t processed the fact that Tom even had cancer. I think it will take a while, which I hear is normal, and then I think it will be the simple things that help us process like going to a restaurant again, or going to a movie, or taking a trip. Even silly things that were put on hold because of his diagnosis. For example, right before we got Tom’s diagnosis we were planning to invest in a good mattress – versus the nice but lower quality ones we’ve had since college. Once he was diagnosed, we found out that we should wrap our mattress during treatment and that it is recommended that we throw out our mattress after the treatment. So as silly as this example is, I think its things like this happening which we’ve talked about all through treatment, that will help this all start to sink in. We certainly are excited to get him feeling better and starting our post-cancer lives. More to come tomorrow…

I woke up this morning, and turned towards Tom’s hospital bed to tell him about the craziest dream I had – we had been told he was cancer-free and that this was going to all be over soon.  When I looked over at him, he gave me a certain smile that all of a sudden made me realize it wasn’t a dream – yesterday really happened. We are STILL cancer-free. Whoever said that winning isn’t everything obviously never had cancer. The icing on the cake today – WE ARE HOME!!!!!!

As we were preparing for surgery, they told us that depending on how surgery went and how he did recovering that we should anticipate 3-5 days in ICU and then a few more days in surgical recovery. We are home after only three nights in the hospital total – take that cancer!!! During this whole fight we never denied the diagnosis, but we did try to defy the verdict of what “should” happen and the timeframes they gave us.  Our doctors came by this morning and told us that we could go home once we got Tom off the IV’s and made sure he was okay with the pain and without oxygen. He passed with flying colors and actually felt the pain was better once the IV was gone and he could use the oral pain pills which was especially pleasing. It was a little crazy that we were just waiting for the doctor to come back to give us the all clear – usually we knew exactly when we would be able to go home because of our chemo timer!

While we were waiting for the okay to go home our oncologist walked into the room – there was a part of us that was going to wait for her to tell us we were cancer-free before we told anyone just to be sure. In a sick way – over the last five months we got so used to not catching a break that we were waiting for the other shoe to drop. Our oncologist has been with us since day one, she is one of the best doctors we’ve ever seen, and for her to come in and smile and tell us we beat the cancer was an unbelievable feeling. She acknowledged that she did not think the tumor would be cancer free, and either did the pathologists.

She gave us the biggest hugs and said to focus on his recovery. We will see her in about a week and get a plan for the future. In the short term, we will get his port out, in the longer term we will be getting scans and blood work done every three months for the foreseeable future. Given the aggressive type of cancer Tom had we will work hard to stay ahead of any problems that could arise.
Before we left, some of our oncology nurses came up to our room to celebrate with Tom since they heard the news. It’s so cool to see the full circle of this diagnosis – and it must be so cool for the nurses who put so much into their patients to see a patient beat cancer too. They thanked us for letting them be a part of this, and our lives - I couldn’t even believe that – if anyone is owed any thanks it’s them.  I about cried! They truly are part of the reason we were able to beat this.

Tom is feeling well, all things considered, and is moving well. It’s amazing to see the progress he has made in just a few days. On Wednesday morning it took multiple people to get him out of bed and to a chair and today he was able to get up and down, though slowly and in pain, on his own. We also had a good chuckle about his departure. Once we got the all clear, I got us packed up and went to go get the car and bring it to the door. Meanwhile, they called a transport volunteer and they wheeled him down in a wheelchair to the door where we can then get him in the car. Tom’s transport man was easily 80 years old, rolling a 31 year old out of the cardiac/surgical unit. I literally laughed out loud and this sweet man could hardly believe that Tom had been so sick. You would think in a more “normal” situation the two of them would switch places. We smiled the whole way home and I really think being home also helps lift the spirits – we spent 27 nights in the hospital in the past few months and are excited to avoid another stay for as long as possible!

We received so many amazing messages and calls filled with excitement about our news – but I must say, it hasn’t sunk in yet for us.  Weather we knew it or not at the time, when we got the diagnosis back in September we chose to be survivors, not victims. It wasn’t a conversation we had, but a mindset that we both immediately had – and I think that is part of the reason we are still in shock. It’s not shock that we did it – that was always the plan – it’s the shock that this finish line danced around like a drunk person at bar close, but we made it.  More to come…
 

There are no words. There are no words. There are no words. Except for these simple ones:

Tom beat cancer.
Let me say that again, Tom beat cancer.
Okay, one more time in caps…TOM BEAT CANCER.

My heart is full, I have goosebumps as I type and I sort of want to puke. That’s what happens when your surgeon comes in and tells you and your amazing fighter of a husband that there was no active cancer in the tumor and the fight is over. We do not need to do anymore chemo; our last and final step is this surgical recovery.

We were not anticipating results until tomorrow but our surgeon, who was about to go into an appointment, saw the pathology and immediately came up stairs because he was excited to tell us the results. The only emotion I can put around this is shock. It’s almost the same type of shock we had when we first found out it was cancer – just a much happier type of shock. When he walked out of the room Tom and I just stared at each other – had the biggest smiles come across our faces and couldn’t believe what we had just heard. If Tom wasn’t in so much pain or hooked up to so many tubes he would have flown out of that chair – it’s truly unbelievable. The odds were not in our favor that this would be the end - but as I’ve said many times – this cancer picked the wrong person to mess with.

This has been a fight; we are not naïve to think we don’t still have a tough road ahead as he recovers from this surgery, but what a difference it makes to know that each day he feels better is actually a better day rather than a good day before the bad days of chemo return. This fight has knocked us down so many times, it has been the hardest thing we’ve ever had to do, but we got back up every damn time because we were not going to let it win. I couldn’t have done this without the fight in my husband – he kept a smile on his face, which in turn kept a smile on mine. Proud doesn’t even describe how I feel about Tom right now – I will forever be in awe of what he managed to do over the last 128 days of our life, and I know he will finish out his surgical recovery strong.  
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We will get a lot more updates tomorrow from our oncology team and are eager to find out how this will all finish up – so more to come on that tomorrow. After reading my post so far to the Editor-In-Chief (Tom), I asked if he wanted to include anything in the post this evening. His reply was exactly what I was going to close with – a thank you. I feel like I’ve said it 100 times but this would not have been possible without our doctors, nurses, techs, friends, family, and coworkers. In line with our fight analogy – we needed people in our corner and we had an army of them. Like I said in the beginning, there are no words...More to come tomorrow...

Boy oh boy we’ve had a whirlwind of a day – but Tom is doing very well and already of out ICU! We had a very long night last night in ICU – we had nurses and doctors coming in all the time, we had x-rays at 4:30 in the morning, all the while Tom was feeling terrible and still in incredible pain. We didn’t get a ton of sleep – but we were making progress.

The morning continued to be tense as Tom’s blood pressure remained high (usually indicates pain level) and there were so many tubes still attached to him. While ICU provides wonderful care, it’s a very scary place to be hanging out and just has an overall tense feel. We got two of his huge IV’s taken out mid-morning which required lots of work due to their location – then they wanted to get him up and to the chair to sit upright. This was quite the feat for Tom, it took quite a while, and a few nurses but we got him up and moved to the chair. It’s very painful for him to get up and down but he did so great on his first move. Going back to the bed awhile later was equally as tough and painful but he powered through, followed all the directions, and made it safely back in bed.

While he was sitting up – we all of a sudden saw some familiar faces peek around our door. Our day nurses from his chemo treatments had found us and come up to see us! It was the sweetest gesture and they were so excited to see Tom had conquered surgery - we didn't even know they knew we were back at the hospital. We love our nurses and were so incredibly touched that in the chaos of their day they saw Tom’s name on the hospital list and came to say hello. Like I’ve said before they really have become friends.

Anyway, after he conquered the chair they were able to take out of one his chest tubes that were draining fluid from the area. I’ll spare the gore details on this one, but it was not pleasant for Tom. The only upside was it was one less tube coming in or out of his body. Once this was all done we got the all clear that he had graduated from ICU! Let me just say – Tom continues to amaze me – he was leaving ICU just shy of 24 hours after his procedure finished and they had originally told us to prepare for several days. INSANE.

We got to our new home in the cardiac unit and settled in – which was quite the process considering Tom is still hooked up to so many things ranging from oxygen to IVs, drain tubes, etc. We got him settled and then were able to relax. Our new unit is one floor above our chemo floor so we are much more familiar with this area of the hospital and in a weird way being in one of our typical rooms made us much calmer since it felt familiar and has way less equipment or tension than the ICU.

Tom rested most of the afternoon until it was time for a walk. Once again, quite the production- it requires two nurses to carry everything that he’s hooked up to - but he conquered it.  The walking is mostly pain free for him – it’s really just that up and down that is tough. After a few walks today he really was done for the night and has since been resting.

He did perk up this evening when our oncologist came in to see us. We hadn’t seen her yesterday but were very excited to see her today. She too was pleased with how the surgery went and is hoping to get us some preliminary results by Friday on the tumor results. Plus, she showed us a picture of the tumor which blew our minds. I won’t be posting it, for many obvious reasons, but this thing was huge and gnarly, and I’m so glad it’s out of him! To round out what has been an absolute insane day - I walked into the hall this evening to see our night chemo nurses coming up to see Tom as well. We just love them. :)

Despite the chaos of the past 36+ hours we are so grateful for our nurses and doctors and every single person in this place that had a hand in this going smoothly so far no matter how small a role they may have played. So tomorrow will be considered a success if we can get more of the tubes out of him, get his blood pressure down and his pain more tolerable – so that’s the plan! More to come….

I don’t even know how to begin the post this evening, so please excuse me if my writing is sub-par today. First, and foremost, Tom is doing well. In an incredible amount of pain, but doing well. I suppose as Julie Andrews once said – let’s start at the very beginning.  

Last night and this morning was tough. Last night we had to have some hard conversations about “what if” scenarios and didn’t sleep too well last night except for a few hours. We got here at 9 this morning and they checked us in (read: paperwork), and then they took Tom back for prep. Unfortunately he had to go back by himself for prep so I had to sit in the waiting room for about 45 minutes until they let us back. Tom’s folks were here and his Aunt Paula and my Mom. Once he was settled in, we were all able to go back and see him until they wheeled him to surgery (See picture). Unfortunately, they were about an hour behind which was brutal because Tom was so incredibly nervous and it felt like we were in a time warp. The cardiac anesthesiologist came in and talked about her plan for the day, and quite frankly it scared the crap out of both of us. While we appreciate being told all possible scenarios it’s a bit tough to hear where IV’s are being placed, why they are being placed and hearing things like “IV’s in your arm or hand aren’t lifesaving”. Certainly we realized the severity of our situation but when you are so close to it starting it can be tough to hear and not have a little panic.

The real panic set in when the doctor came in to chat and said that he had concern about one artery near Tom’s heart. If he put in the camera and didn’t feel like it was safe, they were going to stop the surgery and reschedule for another day with a different team and different equipment. I about lost my cool. The thought of walking out of here today without this surgery having occurred almost made me physically ill, and based on the look on Tom's face he was feeling the same way. Suddenly the focus became less on the surgery and more on if the surgery would even be able to go through. The doctor said he would call out and let us know what his decision was once he got the camera in so we knew exactly what the plan was even though we were confined to the hospital waiting area. Eventually the nurses came in and we had to say our goodbyes and they wheeled Tom away. That was a tough few minutes, especially after all the scary talk from the doctors, but I was eager for them to get things moving.  

We hunkered down in the waiting area and kept our eyes on the reader board that shows surgical progress. We have a number associated to Tom and were able to see what stage he was at in the surgery. About an hour into the waiting one of the receptionists came over and told me I had a call from inside the surgical room. I followed her to the phone hoping they weren’t about to tell me that they couldn’t do it, and thank God they said they were going to take a run at it but would have to open his chest. The relief knowing that they would be getting this out today was so great and then we braced ourselves to get our next call of progress. So at this point, it’s almost 1 and he’s been in surgery for about an hour and a half. At 2, as I was walking out of the bathroom, I get pulled into the post-op family room and our surgeon is standing there with an update. I was shocked that he was already done! He said that the tumor was “ugly” and about the size of a big softball. This thing was no joke. Unfortunately because it was a gnarly son-of-a-gun it didn’t leave with ease. They had to take 10% of Tom’s lung along with his phrenic nerve. Ultimately that will be something he deals with for the rest of his life, but that is a small price to pay to have the sucker out, and we knew there was a chance that would be necessary.

You know when you read a book and aren’t focused and you get to the end of the page and then think “what in the hell did I just read?”, that’s how I felt processing everything the doctor was saying. It’s like my mind was racing 1098745098 times its normal pace and all I wanted to do was get to Tom. Dr. C gave me a hug, and I swear to you it was one of the biggest, tightest and sweetest hugs ever. We have gotten to know him in this process and I hugged him back just as hard. He commented to my in-laws that he just hates to see this happen to “young kids” like us. Thank God I’m only 28 and still classified as a young kid ;-) I can’t say enough about the doctors we have been fortunate enough to have – they are unbelievable – and we are forever in awe of their abilities and dedication to their work.

Anyway, as we were walking out he told me that it would be about two hours before I could see Tom – say what?!?! – it was almost worse knowing that it was over and I couldn’t be with him than when he was in surgery. I was counting down the time to when we would be able to see him and finally (as I hovered near by the receptionist desk looking at the reader board for his progress) she told me she had just gotten a call that we could move to the ICU waiting room and wait to see him. We moved up to ICU and I hunted down a receptionist to find out how long we would need to wait to see him. She recognized me from another part of the hospital (thanks to chemo) and took me to his nurse who then took me into see him because the nurse had some medical questions that Tom wasn’t answering clearly.

His initial appearance definitely took me back – he was visibly in pain and hooked up to so many machines. Oxygen, 3 IVs, a blood pressure IV, two blood drain tubes and much more – meanwhile the nurse is asking me a bunch of questions. There was a lot going on at once. As Tom and I were talking last night he made me promise that the first thing I would tell him when I saw him after surgery was what ended up happening with the procedure. Since we knew there were so many variables to today, he really wanted to know what had actually happened in regards to the cuts they had to make. So he and I made a deal last night – I would tell him that first, but then he had to tell me a joke so I knew he was okay. So it went something like this as I was squeezing his hand:

Honore: I love you, it’s done, you did so great, the doctor is very happy, but they did have to open up your chest.
Tom: Everything hurts.
Honore: I know, they are getting you some more medicine for the pain.
Then I start answering doctor’s questions….
Tom: Why did Adele cross the road?
Honore: Why?
Tom: To say hello from the other side.
Honore: Solid and timely joke babe, great work.

So I knew that despite his agony and pain that he was okay and things could only go up from here – it was a huge relief in our own goofy way.

The rest of the afternoon/evening he came in and out of it and mostly rested. We were having a tough time getting his pain under control but dare I say I think we are getting that problem solved and he’s starting to actually rest. There are no words to describe how tough Tom has been today; despite being scared he just crushed it. His anesthesiologist came in tonight and said as they were taking him out of the room he gave two thumbs up to the entire surgical team. I’m so very proud of him and the fact that he has continued to be positive, and full of gratitude, through it all.  

So now what….in the immediate future tomorrow there will be more scans, the drain tubes should be removed and hopefully he can try to tolerate some food. I’ll keep posting updates on our progress. In the longer term, we now wait 3-5 days to find out if there is active cancer in the tumor. We still need all the prayers, energy and love sent our way for this. It would be a miracle for there not to be any active cancer in the tumor, but dammit I’m not giving up hope until they tell me one way or the other.
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I’m beyond exhausted, so I’ll just close with the biggest thank you I could ever send via a blog. The number of texts, messages, calls and emails we received today was unbelievable, and so appreciated. They kept smiles on my face all day and reminded me how lucky we are. Thank you, thank you, and thank you. More to come tomorrow…  

​Tom is no longer the proud owner of a tumor! It’s out. All of it. It was an “ugly” tumor as the surgeon referred to it but he managed to get it all out. Tom is stable and coming to - more to come this evening. Thank you all so so so so so much for the love and prayers – it’s working! 

Hi Everyone - we are in progress. We had quite the morning with some back and forth on approach of surgery -  with lots of decisions being made and surgery almost not happening. However - despite the delays we have now started, late, but we've started.  Thanks for all the messages and calls. More to come....

 

You know how things never seem to go as planned when you need them to? We were hoping to have a bit of calm before the storm to kick off our week but that failed. Yesterday I was a bit of a crazy person getting ready for the week ahead. It’s sort of like getting ready for vacation, but the worst vacation ever that yields no hotel points or fun. I was trying to get ahead of some work stuff, figure out all the insurance/preauthorization calls that needed to happen today, cleaning, laundry, etc. Laundry was important because there is nothing quite like coming home and knowing that there are clean sheets on the bed (there will be no infections on my watch!) and that things are clean and orderly. It’s surprisingly calming when the house in good order when we come home. Anyway, I say all that to say that last night at 11PM when my washer decided to die on me after only one load of laundry I about lost it. Water is a very important part of laundry and the washer disagreed. The verdict? Frozen pipe. Lovely. 
 
We are both a bit over tired already because we haven’t been sleeping too well, especially these past few nights. The anxiety and nerves are real, different for each of us, but present none the less. The back and forth of wanting this to just be over yet not wanting to deal with it all is a real struggle. We know we’ve got some long nights ahead but are ready for the second half of this fight to start so we can declare victory as soon as possible. And we will declare victory.
 
As I’ve mentioned the surgery is not starting until mid-morning.  I’ll be sure to update the blog throughout the day so folks have updates too. Let me just take a moment to say we are completely aware and in awe of all the love and support that has been coming to us and is headed our way tomorrow. We feel it, we love every text, email or message, and appreciate all of the support and love that we have received. This would be impossible without support and I don’t use that word loosely. Impossible. Part of the reason we are confident going into tomorrow is for that exact reason – we know this cancer isn’t just fighting one person, it’s fighting all of our friends and family -the most amazing network of friends and family - with an enormous amount of prayers, energy and love. A lot more to come tomorrow...

Today was one of those fun days in our life of fighting cancer. I must say one of the hardest things about the past five months has been the inability to trust any moment in time. We can have a great morning where things are going well, and by the afternoon we have major problems. It’s almost like in the back of our minds we are always waiting for the other shoe to drop.

Today was unfortunately one of those days – Tom was up during the night with some pain but was feeling okay by morning. By mid-morning he was experiencing the same pain, in the same location, from when he had his blood clots including pain while breathing. Uh oh.  While it is unusual to have blood clots while on blood thinners, it can happen when someone has cancer.

I called the doctor and they told us we should head in to the ER just to be safe. The real concern was that the pain was in the same spot as the previous location of the blood clots. So I packed up at work, headed home and got Tom and off to the ER we went. We were on such a streak of not being at the hospital! Now, I will say, when we went to the ER and they found out Tom is mid-treatment and has a history of blood clots you get right in. Who knew that cancer was the “jump the line” card in the ER?

Tough guy didn’t think he would have an issue with blood despite his wife telling him he should lay down before they take blood. Now, I really hate to be right when it comes to this stuff, but fast forward 5 minutes and he is pale as a ghost, dripping with sweat and just to top it all off….cue the puking. Once we got him all taken care of and situated it was a matter of a few hours before we got the CT done and the results….NO BLOOD CLOTS!

We were thrilled to say the least. Not just because blood clots are dangerous but because if there had been a blood clot our Tuesday surgery would have been at risk of not happening. It’s a bit of a catch 22 because if there was a clot, then he needs blood thinners, but you can’t be on blood thinners before surgery. Luckily we don’t have to deal with that nightmare, but it certainly was weighing on our minds the entire time we were at the ER.
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So while it was another one of those days that is a roller coaster of emotions, we are just happy that we are sleeping in our own beds tonight and that there weren’t any major issues.  Perhaps this is the change in luck that we’ve needed (the lottery win didn’t pan out) and is a sign of more good things to come going into Tuesday’s surgery!  More to come…

​​A friend and I were chatting this week and she remarked that I have a lot of fight in me. Kind words. I replied yes, but that I feel like my punches are getting weaker – this has been a long five months. Her reply was simple, but perfect – even professional athletes need a half time. Amen to that. It’s a great point – while I have felt like we are a bit weak right now, this really is our “half time”. The second part of this fight is going to be rough – we know that – and in some ways probably tougher than the first part. Regardless, we are gearing up to kick butt in the second half of this fight. 

Today we had our pre-surgical meeting and prep. Really, not a whole lot happens, and quite frankly I wish we had gotten more answers - and it wasn’t for lack of trying. First, they did some bloodwork – which Tom didn’t realize would happen today. I was thinking that we had overcome some of the blood obstacles, but the minute the blood draw started….cue the profuse sweating, extreme paleness and blood pressure drop. I think it was a combination of a few things – but mostly I think it was because it has been a few weeks since he had to give blood and he got out of the “routine” of having to give blood.
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Anyway, the nurse talked us through the day of surgery – asked tons of questions to confirm we won’t have any issues and then we figured out all of Tom’s medicines between now and then so we can get him off anything that could cause danger or issues the day of surgery. Then, our anesthesiologist came in and talked through the procedure from his view point and again asked questions, looked over Tom and made sure that he will be ready for Tuesday as well.
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So here is what we do know:

• Surgery is Tuesday, but will not start until late morning.
• We should tentatively plan for surgery to be about 6 hours (dagger in my heart).  
• They are using a robot to start and then will make decisions from there (I YouTubed videos of the exact system they will be using and eventually had to turn it off because I started to gag – hence my lack of medical career!)  
• Many parts of this procedure are very ambiguous. I know I’ve mentioned this before but they will be making a lot of decisions as the surgery unfolds and they get a better understanding of what they are dealing with. The number of sentences that started with “Well, that depends…” was killing me today.
• Tom will have some help breathing until they know he is stable, but should be breathing on his own by the time he leaves recovery.
• Our stay at the hospital depends (that damn word again!) on how the procedure plays out, but we are planning to be there for a few nights at a minimum.

I am very confident in our doctors and nurses and am eager to get this show on the road. We want the tumor out, so we can get a final verdict on if the cancer is gone and either deal with more chemo or deal with surgery recovery and move up that finish line to getting our lives back. Regardless of outcome, this is a huge huge huge huge huge milestone for us and I’m ready to add it to the list of things Tom has conquered. More to come…

Hello there! I know it’s been a few days and I haven’t been too active on the blog – the good news is that’s because we haven’t had any major updates or shots out of left field! The bad news is – the posts will be picking up again in regards to frequency as we get back into the thick of this cancer fight.

It really has been delightful to have a few weeks of normal – Tom mentioned today he feels the best he has in five months. He has said that before, so the fact that it’s continuing to get even better is awesome. We had a relatively normal weekend, saw some friends and family, watched some great football (GO PACK GO!), and relaxed. We have been trying to strike a good balance of “normal” and still making sure there is plenty of down time for him to relax since doing activities still wipes him out more than usual. I think we’ve found a decent sweet spot and are enjoying these last few days before surgery.

We officially begin surgery prep this week – we have an appointment with the surgical team and anesthesiologist on Wednesday and will go over the plan for next Tuesday. While I’m sure the reality of the surgery and all the info we get on Wednesday will be a lot to process, we would rather know all possibilities and prepare accordingly than be surprised during or after surgery. Tom has never gone under before and he’s got some nerves around that, but I’m hoping once the anesthesiologist explains everything that he will feel a bit better and at least know what to expect. 9 days until surgery!

Speaking of Wednesday, we are planning to be the lucky winners of $1.3 Billion dollars. I actually got one regular ball and the power ball for a big old victory of $4 – but hey I only spent $11 on tickets so that’s not too bad right?! I’ve got a whole list of things I would do with the money – and I feel like with a billion dollars I can try to cure cancer too. Because along with any debt we have – I want cancer gone with my billion dollars too so no one else I love would ever have to deal with this! More to come…and enjoy the photo of Tom preparing for surgery ;-) 

It’s officially been a month since chemo! That is actually hard to believe because some parts of the past month have felt so slow, and yet all in all it has moved relatively fast. I think the holidays helped with that too though! Regardless of speed – we are headed in the right direction – towards a cancer free life!

We are officially under two weeks until surgery – 13 days to go! Really, that just means lots of calls and paperwork – we have to get all the insurance updated and make sure everything is ready to go for surgery. Our doctor sent us some prep videos today (nothing with too much gore!) and we are continuing to do research ourselves. Each day closer we are excited to get this next phase done, but at the same time the nerves go up a bit too.

Tom is feeling much better than he was a month ago :) His strength is coming back and dare I say some of his hair is trying to grow again too. Each bit of strength puts some more chips in our favor going into surgery so I’m so happy he’s been on the upward trend! I'm looking forward to a month from now, when we are 2.5 weeks out of surgery...More to come…

Happy New Year! It’s hard to believe that January is our fifth month of fighting this darn thing – but hopefully we are closer to the end than the beginning at this point.  Tom & I decided to kick off the year on our terms and took a little trip. We got away for a night and were able to surprise and meet up with some friends and feel “normal” for a moment. 

We were gone for less than 36 hours, but even in those 36 hours we felt like we had our lives back a bit. Tom is feeling much better and stronger each day so that was the only reason we decided to get away for the night – in fact we didn’t even make a final decision on if we would go anywhere until late Thursday night. We are so glad we did. To feel normal was one thing, but to know that we are already living life a bit differently because we've had it taken all away was another thing. I've said this before but I'm very excited for our post cancer life. 

We’ve got 16 days until surgery and I’m hopeful that he continues to feel stronger each day until then so he can have an easier recovery once surgery is done. In the meantime we will continue to enjoy our brief brush of normal even though we know there is an asterisk to the normal right now.

One thing that makes us feel very normal is the lack of doctor’s appointments! We will meet with the anesthesiologist next week but other than that, we won’t be back in the hospital until the day of his surgery. This is a real treat for us since there is so much coordination, paperwork, time, effort and energy required for the appointments – it’s the little things! More to come this week…