I have one major regret for today, and I don’t typically have regrets. There was a moment of today that I wish I had Tom’s reaction in a photo or video  - but unfortunately my story telling will have to do…

Tom woke up feeling decent this morning, but a little apprehensive about the blood transfusion. Now, we knew this would be a relatively simple process, but Tom was overthinking the unknown and wondering how it would all work which got him a little uneasy for the transfusion. We headed over mid-morning and headed up to the infusion center – an unexplored floor in our favorite hospital. We can now check that floor off the list! Anyway, we got registered, and then sat in the waiting room and waited for our infusion nurse. Now, remember, tomorrow is Halloween. The receptionists were not dressed up at all so it wasn’t even occurring to us that someone in costume would come and get us…
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We hear “Thomas” and both get up and turn towards the nurse and she is dressed as the greatest thing ever. A cheese head (including the earrings which you can't see well in the photo). GO PACK GO!!!!!!!!!!!!!! If you’ve been reading along, you know I’m a Packer fan, which creates the big rivalry with Tom and his Bears. Of all our rivalries, that is the one we are most serious about. I have a love for the Packers, have a celebrity crush on Aaron Rodgers, and would probably bid an unhealthy amount on eBay for a lock of Clay Matthew’s hair. I literally burst out laughing and yelled, “Go Pack Go” and as Tom laughed and replied “I honestly didn’t think today could get worse”. This is where I WISH I had gotten this exchange on camera – his face was priceless.

In the big scheme of things, he got the best nurse for many reasons, but especially because the other costumes we saw were more complex. The nurse dressed as Mickey Mouse (including giant Mickey hands) would have been challenging, and who trusts a mouse with four fingers but not opposable thumbs anyway? I’m actually quite shocked none of the infusion nurses were dressed as vampires, seems like a logical costume choice for their careers...

Anyway, we got settled in our infusion room which was actually quite nice, it’s a private room with a big TV, an infusion chair, and even had a chair with a desk for me to get some work done. They prepped Tom for the blood and walked us through the potential reactions someone can have to an infusion and what they would be looking for as they started the infusion. Luckily, he had no reaction! In fact, once we got it started (it’s quite the process), it was a pretty simple few hours that he just had to be hooked up and gradually receive the blood. Interestingly, the blood is cold when it is delivered which actually makes the patient cold when they start the infusion. They had warm blankets and he was all cozy in his infusion chair throughout the process. Meanwhile, I was over by the windows trying not to get sunburned.  For the record, the blanket warmer device looks exactly like a wine fridge. Coincidence? I think not.

As we finished up, our nurse said despite how much fun she had with us, she hoped she wouldn’t have to see us again. We agree! Tom did great and hopefully this is the only transfusion he will need – but it did make him feel much better and put a little pep in his step. Hopefully with this extra blood his blood levels will continue to rise and he will be better prepared for our next bout of chemo. We hope everyone has a great Halloween, more to come…

Well, unfortunately Tom got more into the Halloween spirits than I had hoped. After blood work today, it was determined he needs a blood transfusion tomorrow due to his red/white counts, so we will be spending our Friday at the hospital for his transfusion. We should be in and out of the hospital tomorrow (thank goodness we don’t have another sleepover), and in theory it should be a relatively simple process so fingers crossed all goes well. The great thing about a transfusion is that he should be feeling much better afterwards since the new blood will boost his red/white blood cell counts way up. Hopefully it’s a small bump in the road and this will be the only time we have to do this throughout his treatment.

He’s not looking forward to this, as you can imagine, but we were talking tonight and what’s most challenging for us right now is the constant unknown. It’s incredibly hard to not be able to trust any moment in time. For example, the morning of the blood clots he was feeling great, with the most energy he had in weeks and was excited for his last two “good” days. Fast forward 6 hours and he is wincing in pain in the ER. This morning we woke up thinking he just has to get his blood checked, and then has the weekend to rest, and now we have a blood transfusion tomorrow. Certainly, this happens in life no matter what, but the constant waiting for test results, checking progress, etc. can be draining and make it hard to not cautiously doubt good days since his health can change so fast. So tomorrow is a whole other adventure...more to come...

Well, we’ve made it through the few days post chemo. What a difference 72 hours can make in our life. Tom is feeling much better, the nausea is starting to subside, but the extreme fatigue/exhaustion still lingers. Unfortunately, there isn’t a magical pill that can help boost his energy or prevent exhaustion, so that is more of a gradual climb back to his “normal”. Plus, if there was a pill that worked that type of magic, I would have started taking it 6 weeks ago!

Today marks 40 days until the last day of chemo – not that we are counting. His diagnosis was 43 days ago. I’m not even sure how to describe the past 43 days, but if I had to summarize it, I would say one word –blur. The last day of chemo will be a huge milestone for us and then we will have the final hurdle of surgery – so let the countdown begin – 40 days until the end of chemo! Some days, I’m not even sure how we have kept it together so far, but I’m hopeful that the next 40 days are quick, and calm, without any major disruptions!

In other news, Tom thought it would be funny to fake a reaction to one of his shots that I give him at home. I gave him the shot and he looked at me with a panicked look, dropped his head back and started shaking his arms. Worst. Joke. Ever. However, I know he’s starting to feel better when he starts to joke around again. Such a double edge sword…but I don’t think he’ll do that again because I threatened to take him back to the hospital…and he says my father-in-law is to blame for teaching him those kinds of jokes. Until next time...

 Three years ago today we made vows to each other on our wedding day – it’s hard to believe how fast the time has gone – and it’s amazing to think how little of a clue we had for what lied ahead. This diagnosis has taken us to the edge of our vows and back and have truly put all those words to test.

We said, “I (Honore or Tom) take you (Honore or Tom) to have and to hold, from this day forward, for better or for worse, for richer or for poorer, in sickness and in health, to love and cherish, until death do you part.”

I’ve got some thoughts on this. It goes more like this for us right now:

 “I Honore, take you Tom…
to have and to hold close so I don’t fall off the edge of the tiny hospital bed…
from whatever the hell day it is, because I lost track of days in the hospital, forward….
for better, and there will be better, or for worse, but let’s hope not much worse…
for richer, when I finally win a lottery scratch card, or for poorer…
in cancer, and in health, of which we will never take for granted…
to love, more than I ever thought possible, and cherish you through a brief brush with death, because we are going to beat this thing…”

Seems more realistic don’t you think? All kidding aside, we know we will be stronger for it all when this is over and we have our lives back. Ironically, our original plan for our anniversary was to be at a resort in Mexico for a long anniversary weekend, but the hurricane would have made that quite an adventure too!

As you can imagine, we had a bit of a low key day. Our big anniversary date consisted of us getting up early and going to the doctor to get his booster shot which really exhausted him. It’s amazing what these first few days post treatment do to him. It is no exaggeration when I say he is out of breath if he walks around the house for longer than a minute. He is completely wiped out. Once we got home, he dozed in and out while I worked all day from home.

Despite everything going on in our lives, when Tom was having his “good week” before chemo he figured out a way to get to Hallmark without me knowing and had an anniversary card for me. It was the sweetest thing he could have done, better than any gift in the world. I made him his a favorite dish for dinner tonight and we caught up on some stuff on the DVR. He was feeling pretty down today that his situation made for a rather mild anniversary, and I’d be lying if I said there weren’t some tears today from both of us, but I think it was a perfect anniversary considering our situation.

I know yesterday I said there would be a special post today – and that was supposed to be a post from Tom. To be honest, he was attempting to write an anniversary post and a thank you to everyone for all the messages but was quite overwhelmed (in a good way) and given his rough day thought he’d post another time instead. So stay tuned for that one coming soon :) Thanks for all the love, until next time…
 

HOME. HOME. HOME. HOME. HOME. Any guesses where we are? HOME. Those were some of the longest 7 days of our lives, and we still aren’t sure why 7 days on vacation goes so fast, yet 7 days in a hospital is like a never ending march…but we did it.

Today was a bit challenging, Tom was getting sick again, and we were so anxious to get out of there so it felt like a very long morning and early afternoon. Here’s the trick with our last day – we know exactly, down to the minute, when we can leave because of the treatment cycle. Lucky for us, the nurses love us, and she was waiting in our room for the IV machine to beep and immediately removed all of his port IVs and got us out of there quickly. We already had gone through all the discharge paperwork, which I refer to as our medicine matrix, so we really just had to wait for that last drop of medicine before we could leave. At one point, Tom was shaking the tubing of his IV to help it move along; of course the nurse laughed and said that would do absolutely no good.

It’s hard to believe we are half way done with chemo, and by hard to believe, I mean Hallelujah. We have tried to stay positive, and Tom has been doing SO incredibly well. The doctors are surprised at how well his body is handling his treatment but don't get me wrong, we have some really really tough days. A "good day for him" is not having to feel like he is going to throw up all day, and being able to walk down the block and not feel like he climbed Mount Everest, but he has been putting mind over matter for a lot of this treatment cycle and just kicking it's butt. 

The beautiful thing about going home is that it lifted his spirits. High spirits help as we go into a few of the hardest days of the chemo cycle so it is comforting to be home in his own bed, in a normal sized shower, and not be hooked up to IV’s. We hate the IV machine so much we took a photo of it turned OFF before we left. Anyway, we came home to a stack of cards – which he loved – they really make him smile and help keep his positive spirits into the post chemo days.  

A month ago when this all began we had started the blog to keep everyone informed, and it’s morphing into more than that. First, a side-effect of Tom’s treatment is a mild amnesia, so it’s likely he won’t remember most of his treatment details – for which I’m actually thankful. They say he will be able to remember this period of his life, and that he had treatments, but not likely he would remember specific conversations, etc. I sort of thought that seemed odd, but it was clear this week he remembered very little about his first treatment and certain events of the past month.  Part of this blog is a way for him to look back and have some sort of memory of this time in his life, all the love that was around us, and how many people were rooting for him. Second, it’s become a little bit of humor and therapy for us to try to think of creative things to post about that aren’t just about treatment and might help bring a smile to people’s faces. I’m glad people are enjoying it and using it as a way to stay informed; we were surprised to find out we are getting over 1K hits/week with an average of 400+ unique hits so we will continue on and perhaps get more creative as we go.

So perks of this stay?

• We are halfway done with chemo...
• I got another full loyalty card in the cafeteria - and an extra punch because the guy dropped my omelet on the floor...
• It will make chemo number three feel fast because we won’t have an extended stay...
• Tom watched a segment on Tiny Houses and tried to convince me that it would be a good idea to sell our house and live in a tiny house attached to one of our cars.  (I'm chalking that up to his other Chemo Confusion symptoms) 
• Multiple times we laughed so hard we cried...
• We avoided a hospital stay on a special day  - we got home the day before our wedding anniversary...

Sorry for the rather scattered post tonight, but stay tuned for a special anniversary post tomorrow….

Round 2 of Chemo? Check! Phew, what a week, but we’ve almost made it through. We had a bit of a rough day with some more blood clot pain returning out of nowhere, after four days of no pain, and then Tom getting sick (Nausea – 1, Tom – 0). But we are done. Tonight is our last night here and then after a full 7 days here we can get home. I’m beyond excited for this – as is he!

We’ve had a tough week here which was a bit of a roller coaster. We came in feeling pretty down with the blood clots, got some momentum once we started chemo, and then had a rough last few days of hospital fatigue and Tom’s symptoms rearing their ugly head. I truly think just being home will help lift spirts and make life feel “normal”, even if he’s feeling very sick.
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When we leave tomorrow we are done with 2 of 4 treatments, so halfway done with chemo! We know we’ve got surgery too, but for now we celebrate chemo. I’m exhausted so my apologies for the short post, but more to come…

Phew! Another day in the books, we are so darn close, yet it feels so far. One more day of chemo and then two more nights here in the hospital. We can do it. As we get further into the week, he tends to get more fatigued and tired, and that continues to be the case this week. I would anticipate tomorrow he will sleep quite a bit as he gets his last treatment, but so far this treatment we’ve been very lucky with the nausea. Perhaps we have gotten the mix of anti-nausea medicines figured out for him! So tonight, for your reading pleasure, we came up with a list of things that happen when you spend a full week at the hospital:

1. I get a little crazy in the gift shop. I’ll be honest, this is a really good hospital gift shop, they’ve got some awesome home décor stuff, and it feels like everything is on sale (and not the kind of sale stuff that is so ugly and you totally understand why it’s on sale). As much as I was tempted by the hospital sweatshirt – because much like a college sweatshirt I will have paid this place enough to wear it with pride – I got some cute décor, and a sentimental piece we will hang up in the house when we get home to always remind us of this experience, and how lucky we are.

2. We get cynical about commercials. More specifically, this is an issue for Tom. As you can imagine, he’s been pretty limited it what he is able to do, so he has watched a more than average amount of TV. The following commercials bother him specifically:

• Chevy Commercial with Wi-Fi In the Car: He’s irritated that they don’t tell you there is a data plan required AND that almost everyone has internet on their phone. He thinks it’s the silliest campaign ever and yells at the TV people when they act so excited – never mind that they are actors.
• Domino’s Pizza: He feels that the pizza emoticon campaign is misleading because you obviously have to do some setup work before you text Dominos for your order. I’m not sure why this one bothers him so much, but it’s at the point where I literally laugh out loud when it comes on because of his reaction.

3.  We make lots of new friends. I’m a pretty social person and have made friends here at the hospital. The checkout ladies in the cafeteria are wonderful and keep an eye to make sure I’m eating well so I can take care of Tom. I’ve made some friends on our floor that are also here supporting their families, and of course we have gotten close with some of our favorite nurses, technicians and the cleaning staff.

4. Crazy Conversations. Imagine being with your spouse holed up in a room for seven days. Minus our scare earlier in the week, we try to make treatment week as fun as possible. It’s kind of cool that we’ve had some of the most random conversations and learned stuff about each other that we never knew despite being together for 9 years. For example, he never knew that as a child I once made the poor decision to swallow a penny (for the record, I thought it was chocolate).

5. Not All Late Night Boredom Activities Are Encouraged. Let’s just say drawing funny faces on the masks seems to be frowned upon.  

Thank you all for the prayers, good energy and great vibes. We truly feel it all and know we’ve got so many people rooting for us. THANK YOU! More to come tomorrow…

​Day 3 – DONE! 2 more days to go. We are going a little stir crazy in the hospital, but know we are getting closer and closer to our stay being over which is what is keeping us going. Tom is starting to feel the repeated days of chemo and getting quite fatigued and tired, but he’s been rocking it. We were incredibly close to needing a blood transfusion, but his blood counts were just at the cutoff point so we avoided that. Phew! Given how he reacts to blood being drawn from him, I can’t even imagine what the reverse would do!
 
All in all, his counts look good, he’s managing to get by with little nausea, but he is sleeping and resting quite a bit. He was a little bummed all day, but we have the Cubs to thank for that, not the chemo :)

I’ll be honest, we are exhausted. It’s been a long week already and we are going to try to catch up a bit, so a brief post tonight, but for good reason as we try to keep ourselves ahead of what will be a long few days after chemo too. Thanks for all the great blog comments, the text messages, emails, calls and cards  - it really brightens our day and keeps us going through this all! Until next time...

Day 2 is in the books! We had a relatively calm day with our second day of treatment of the cycle. This cycle has actually been quite different from our first in one very important way – much less pain. Our first cycle was more challenging because Tom was just coming off his port surgery so he was taking a lot more medication than he is now because we are just getting chemo prep/chemo drugs during treatment. It may not seem like that big of a deal, but it does make him less of a medication zombie and helps reduce his foggy head feeling. He’s feeling quite well considering we are already done with day two, but during our first round of treatment day two into day three was the toughest for him and when it really started to “hit” him.

Speaking of hitting him, I got to poke him again tonight with his needle, and he says it was less painful than yesterday. When I did it the first time I was nervous so I went slow - the trick to these shots is to make them quick -so jack be nimble, jack be quick he got that shot fast tonight.           Regardless of his (alleged) pain, my glove snaps were perfect this evening.

The hardest part of his day was the end of the Cubs post-season run to the World Series. I have to say it’s actually kind of sweet to hear the different rooms cheering and providing some joy to these otherwise quiet halls. As I was walking down to the nurse’s station tonight an older gentleman was here with his loved one and he had chatted with Tom & I earlier in the evening when we were out on our evening hallway stroll. When he saw me walking to the nurses station (during the game), he was also in the hall again and commented that he heard Tom clapping and was hoping they could pull off the win for him. We chatted for a bit, and he showed me an actual card in his wallet that anointed him as a lifelong Cubs fan - he got the card in 1954 at his first game - I'm impressed, mostly because I can't find a gift card that I know is in my wallet and he readily pulled out a card he's had for over 50 years. Anyway, he then went on to tell me how much it hurt his heart to see such a young couple fighting such a tough disease and that we had caught him off guard earlier when he first saw us taking our stroll. Yes, we are young. Yes, we don’t look like your average couple in the oncology unit.  However, I wouldn’t wish this on anyone, at any age, including my worst enemy. If anything, we are lucky to be fighting this at a younger age because Tom’s body has the ability to fight it and he & I will be stronger than ever when it’s all over. This gentleman was not the first to react this way, and I’m sure he won’t’ be the last – but we’re going to beat this - and we might as well enjoy people referring to us as young. :) 

Anyway, the best way to summarize our day is the below photo of a t-shirt that his aunt gifted him today. No truer words have been said, and cancer’s got nothing on us! More to come tomorrow…

It’s been a crazy few days here at Casa de Hospital. I almost posted at 2am last night, but then realized I should probably attempt to get a little shut eye before morning and I was still hating cancer pretty hard and figured I should be a little more positive before I post again. Per the name of the post – we’ve been here since Sunday and sadly did not get to go home prior to chemo. That makes for a seven-night stay this push and we are already counting down our nights remaining - but the good news is we’ve got the blood clots under control.

Essentially, Tom was high risk for blood clots because of his chemo treatment. They had warned us of all the symptoms to look for, so I’m glad we were smart enough to put it all together and get to the hospital. Due to his pain, Tom lost track of the fact that we came to the hospital a few hours before the Cubs game, to which he said, “It’s a good thing you didn’t mention it, because I probably would have avoided coming”. Apparently he is willing to jeopardize his health for the Cubs. The clots were incredibly painful and now he will require shots every twelve hours – for the next three months. So, starting tonight, I got the low down on administering the shots and will be moonlighting as Nurse Honore moving forward for the shots. Remember our trust exercise with the head shaving? The repeated shots make that trust exercise look like a piece of cake. I had three nurses watching me/teaching me as I (sort of) confidently stabbed him or should I say poked him with the needle. I’ll continue to do the shots while I’m here to make sure I’m all good to go at home. However, for now, I’ve totally got the dramatic doctor/nurse glove snap thing down.

Today was another busy day, but I’m glad to say that we are done with Day 1 of our chemo treatment. He rocked it as per usual. We saw our regular oncologist first thing this morning to prepare for the day and she had great reports from his blood work and we definitely have started to kill this tumor! Unfortunately it didn’t reduce in size greatly (yet), but the blood counts show great progress so that was a great way to start our day after a rough two days here dealing with the clots. As for now, Tom is trying hard to keep his eyes open, despite meds that make him drowsy, to watch the whole Cubs game :) More to come tomorrow…

Well, sadly, I’m writing this post from the hospital (I'm fully aware I should be sleeping right now) after a crazy day. It seems that despite how great things have been going, we’ve taken a few steps back. We rushed to the ER this afternoon after what we thought was back pain became much more serious over the afternoon. After calling our on-call oncologist and determining we should get him checked out, we confirmed what we hoped wouldn’t be the case. Multiple blood clots in the arteries around the lung. Punch. In. The. Gut.

I won’t lie – this has been tough to swallow. We are VERY thankful we caught the clots before, God forbid, they got to his brain, heart or lung – but this 100% absolutely, positively, sucks and took the wind right out of our sails. Tom feels like he got cheated out of two of his “good” days, we weren’t wanting an extended stay at the hospital, and it’s frustrating to feel like we are doing everything the doctors tell us to do and yet we still hit roadblocks. He’s in a lot of pain, but taking it like a champ and continuing to make me so proud.

Adding insult to injury, after I ran home to pack us bags, grab our laptops, etc. I parked and loaded myself up with our cargo - two laptop bags, two overnight bags, my blanket, a pillow and one extra bag of hospital stuff. I get to the entrance of his building, and it’s closed because it was after hours and I had to literally walk all the way around the hospital grounds to the emergency entrance and then trek from there all the way back to his room.  We are lucky, we have amazing people in our lives, we both have jobs we love, we have each other, etc. - but after the day we’ve had, we simply reserve the right to hate cancer today.

We meet with our great team of doctors in the morning…more to come. 

I’m sure many people get excited about dinner and a movie, a show or some other event when having a date night with their spouse. Tom & I? Our hot date tonight was the final stages of the hair loss saga - and let me just say, though still emotional, we made the best of it. 

As you know, Wednesday started the hair loss adventure. Yesterday, Tom left his hair alone for the most part, and then this morning in the shower a majority of what was left fell out. It was clear it was time to just shave the rest off because the spots were so scattered. So…our date night began on the back patio, with him wearing a garbage bag, and me shaving his head with the clippers. I did what any logical person would do and immediately shaved an “H” in his head. Considering we all know how he handles needles, I would never anticipate a tattoo with my name on it – so I felt like this was an important thing to do. (For the record, I’m kidding and would never want him to get a tattoo) I got as close as possible with the clippers we had, but we knew there was more left to do after our first round on the patio. I’m sure our neighbors thought we were absolutely crazy, but I doubt that was the first time they thought that due to an incident with a bee and a tennis racket over the summer, so I’m not going to lose any sleep over it.

Later in the evening after some dinner and a movie on the couch – we started part two. The razor blade to his head. Do you want to have a trust exercise for your marriage? Have your spouse cover your head in shave gel and trust them to take a razor to it. Luckily, we had some guidance from a friend who has experience shaving their head… so I quite literally took a deep breath, closed one eye (just kidding), and went for it. Fast forward 20 minutes after some laughs and one close call with the tip of his ear and we’ve officially taken ownership of the hair loss!

I personally feel like he’s rocking it – see below -  but some of my favorite quotes from him while getting adjusted to his new look include:

• “I can’t take a picture and not look like Lex Luther!”
• “I feel like an evil mastermind now – I’m taking over the world!”
• “My head is cold”
• “I’m just trying to look like your Dad” (referring to my father who has a similar look)

I must say, I was a little confused why he didn’t tip his barber. I guess as a newbie to this particular art and because of the brief scare that I cut off part of his ear I should have set my bar lower. I’ll hope for better luck next time in the tip department. :) 

Tom is feeling very good, which is exactly what should be happening before our next chemo. We met with both oncologists yesterday and they are both very happy with how well he is doing and the results of his blood tests. Our one oncologist was shocked at how well Tom was doing – I’m so incredibly proud of him – he’s really trying hard to beat this thing and it’s working!
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So, this weekend we get ready for another round of chemo and try to salvage every moment of him feeling a bit better. Plus, tomorrow starts the next series for the Cubs’ quest for the World Series – so if you don’t have a team to root for, feel free to support the Cubs (or root against the Mets) so we can keep these games going through treatment! Until next time...

​Well, today was a very emotional day. The hair loss took a dramatic turn and was literally coming out in chunks this morning. Now, in hindsight, Tom did pull at his hair quite a bit during that dramatic Cubs series win last night, but by this morning it was clear that the hair loss was in full swing.

As many cancer patients will tell you – this is an especially hard day for many reasons. For Tom, it’s that no hair makes him “look sick”, versus look like himself. He has been incredibly strong throughout this whole journey and I have such admiration for the fact that he is being so strong, trying to remain positive and attempting make his life as normal as possible for himself and for the people around him. I don’t care how strong you are, losing your hair is tough, and it totally sucks. So, Tom made the decision to shave it today once he woke up and realized it was officially necessary – it’s not 100% gone – he chose to do a very close shave and will let the rest continue to fall out on its own. Luckily, we are approaching a Midwest winter which requires hats and he looked good with the haircut!

So as positive as we are trying to be – this was a tough day. Since we are in between the old hair and the final hair loss, we weren't ready to unveil the new look– so tonight we rocked hats – and rocked them pretty well if I may say so myself. Until next time...

So for those that know us well, you know Tom & I love our sports teams. In fact, prior to our wedding Tom randomly sent me an email at work with the subject line “Sports Prenuptial Agreement” that requested all children from our marriage be Bears/Cubs/Bulls/Blackhawks fans. I wish I was kidding about that, but I’m not. For the record, I laughed out loud and deleted the email. We don’t disagree over too much, but we disagree over a few things:

1. Bears/Packers
2. Brewers/Cubs
3. Other less important rivalries like Xavier/Marquette and Bulls/Bucks
4. …and who is funnier.

I’ll let you all be the judge of these (and remind you that the Packers are 5-0), but I must say for the first time in my life I am not rooting against one of his teams. Tom has been a lifelong obsessed Cubs fan - he actually watches almost all of games, coaches from the couch and is quite invested in the team. He was very excited for this season and the late season push into the playoffs prior to the cancer diagnosis, but now it’s really become a lifeline. As silly as it may seem, having games throughout the week gives him something to get excited about and look forward to in a very isolating time when he’s required to minimize his exposure to people.

Anyway, the Cubs won tonight – and that certainly helped continue Tom’s good week. The trickiest part about this third week prior to the next round of treatment is that though he is feeling better (i.e., less nausea, less medications, etc.), his body is still very much fighting this cancer. For example, we took a walk down the block yesterday and he was SPENT. With his reduced red and white blood cells it’s challenging for his body to keep up with lots of activity. So while he feels better, his body’s ability to do what he thinks he should be able to do doesn’t necessarily align, which can be frustrating. But he is at least feeling better…

For the record, I’m a big fan of the Cubs manager, Joe Maddon. (Joe, if you’re reading this call me because I wouldn’t mind having a beer with you AND my husband would flip out if you showed up at the hospital). As a Brewers fan, I just can't root for the Cubs but I will certainly root against the Cardinals since they are a division rival... and of course I will continue to root for my husband’s happiness :)
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So for a little comic relief, I went into the old arsenal of photos and found one of our engagement pics with our opposing jerseys (we also took shots with Bears/Packers jerseys, but I’ll spare you all those gems). I know it’s totally natural that we are beautifully posed and sitting on a beach in our opposing jerseys, right? Until next time…

We’ve turned the corner! Hell we’ve turned the corner and are almost on the next block. I’m SO proud of my husband who has made it through the first round of chemo and the initial post-chemo days which were incredibly tough. However, now he is feeling much better - the Cubs wild card came probably had something to do with that too. In fact yesterday, there was a chance that we were going to need to go back to the doctor to get some fluids and supplements depending on his blood results from Thursday and they called and said everything was looking great so far and there was no need. Woo hoo! With the initial post-chemo days complete he is on way fewer medications, sleeping through the night (hallelujah!) and his appetite is rebounding out a bit.

In a weird way it almost plays with our minds more that he’s feeling good because (1) good has a whole different meaning in his current condition (2) we still have to be careful of lots of people/crowds because he still has super low counts and (3) we still have this cloud of knowing we’ve got to do this all over again in 9 days. However, in our quest to be positive we are encouraged by how well he’s doing and being able to figure out what the ups and downs of these chemo cycles will be – and the fact that it looks like we will have a good stretch of “ups” within these chemo cycles is wonderful.

Today felt sort of normal as I ran some errands to pick up some stuff we needed (including my own self-prescribed medicine – see right). All in all – we are preparing for what we hope is a calm week - more to come... 

Well, in addition to cancer, my dear dear husband has a little thing known as trypanophobia/ hemophobia. That would be a fear of needles/blood draw. I used to joke and give him a hard time about it, because I honestly thought he was just being a little dramatic, but I will publically take that back. :-)  It’s not that he doesn’t like them, or gets scared it’s that he really has a phobia and his body physically reacts when he needs blood taken which usually results in him either passing out, vomiting, or going pale (almost my Irish level of pale) and sweating. As you can imagine, between chemo and blood work this has created a whole separate challenge. The good thing is he does have the port in, so they can get blood from that and not have to take it from his arm every time, but even still, he sees that needle or knows he has to give blood and it’s all over.

Tonight, I was doing some research online to see if there were any tips or tricks on how to help combat this issue. No joke, he was getting queasy reading over my shoulder next to me, the very thought can make him have a reaction. Luckily, he doesn't take himself too seriously and makes lots of jokes about it all and usually has the nurses cracking up.

Anyway, he did some blood work today (see above paragraph to take a guess at how that went) and the counts were low which is expected for a week out of chemo. We will know more tomorrow and next week on his blood work when we meet with the doctors. So maybe he’s not great with needles and dealing with blood, but he’s totally crushing chemo and if I had to pick between the two, I pick chemo! 

How Are You Doing? It’s the question that we’ve been getting a lot lately – but a difficult one to answer. Personally, I think we are doing quite well considering how fast our lives have changed, how many quick decisions we had to make and how scary this whole experience has been. We are staying as positive as possible, trying to find humor in this chaos and feeling incredibly supported by our friends, family and work.

However, I also don’t want to misrepresent our reality – we would take our old lives back in a second.  The hardest part of this whole experience has been how quickly we had to figure out - and adapt - to our new “normal”. I have alarms set all throughout the night to get up and give Tom his medicine, “good” has a whole new meaning, and we are at the mercy of not being able to plan anything because we won’t know how he feels – but what gets us through this is knowing this will only be temporary. There have been moments in all of this, like yesterday, where I stopped to breathe for a moment and really questioned if this is all real life. Sadly, it is, but I know months from now we will look back at this few months of our life and laugh about how crazy it all was. (This conversation will likely happen with a glass of red wine in my hand.)

I’m glad to report that Tom has turned the corner on the 48-72 hours post-chemo and is feeling MUCH better. We knew those first three days post chemo would be the toughest in these three week cycles (along with the chemo days), and with the help of some medication adjustments we managed to get through these rough days without too much pandemonium! Now if all goes as the doctors say…he will start to feel better and better each day just in time to get his next round of chemo. We still have to be very careful since his immune system is quite compromised even if he feels better – but we are encouraged by his progress!

My grandmother was a journalist and recently I read some of her writing – in one of her articles she wrote that without a few bad days, you would never be able to recognize the good days. So despite some bad days, it will only help us appreciate the good ones ahead – and we know we’ve got plenty of those to come. So to answer the question, considering our situation, we are all good :) 

Let the bounce back begin. The five days of chemo is incredibly intense, but it’s just scratching the surface. The first few days after chemo are actually even tougher because his body adjusts to not having the chemo treatments and deals with the effects of all the drugs. I won’t sugar coat it at all – today was the toughest day so far (for both of us) – right up there with the original diagnosis day.

Tom & I had to be at the hospital this morning so the surgical doctor could check his port (typical protocol about a week after the surgery) and to get a shot from the oncologist. Essentially this shot helps his immune system rebound (he has no immune system after chemo because his red/white blood cells are so low) as quick as possible. This shot is great to help prevent major infections but it comes with a price because it creates the feelings and symptoms of a flu for a few days following. We ended up being at the hospital a bit longer than we had anticipated because Tom was having a tough time and had a few scary episodes. Thank goodness we were at the hospital as they were able to quickly help us in a very scary situation. Despite an unexpectedly eventful morning, we got home mid-morning and Tom was able to sleep and recover.

Here’s hoping we turn the corner tomorrow and have more of a “normal” week before the next round of chemo. One other important tidbit we learned today? I’m a terrible wheelchair driver. :) Until next time...

​It’s well past midnight and I need to be up again in an hour to give Tom some more medicine, so tonight’s post won’t be long – but it’s an important one! WE. ARE. HOME. Delightful! I will say, today was incredibly tough, but we managed to get home. Tom unfortunately started feeling the effects of the chemo overnight last night and into this morning. Nausea, vomiting, fatigue, and general weakness really reared its ugly head. Tom essentially slept until we were discharged in the afternoon. We had to wait for the final post-chemo meds to finish dripping, which felt like DAYS when we are so close to getting home after almost a week at the hospital. It probably felt extra-long for him too since the Bears game was on for the last few hours in the hospital. (Sorry – I couldn’t help myself even if they did win)

​Here is a shot of us in the car, excited to be heading home. (Much like a playoff beard in hockey, Tom is growing a chemo beard until it falls out) As expected, the symptoms have continued at home and Tom has essentially slept most of the day. He is on an incredible number of pills to hopefully proactively help manage some of these symptoms. The number of drugs along with the frequency of times he needs to take them resulted me drawing up a chart so I can keep track of it all, I certainly don’t want him feeling crummy because we missed a dose – not on my watch! We are expecting a rough few days with limited action on his part and then hopefully he turns the corner and can feel more “normal” towards the end of this week and next week before we head back for round two.

Speaking of heading home - quite literally we were able to walk out/get pushed in a wheel chair (I'll let you guess which was Tom) of the hospital today. Our hospital neighbor one door down from us in the oncology wing was saying her final goodbyes this afternoon as we were leaving. Her children, grandchildren, and siblings were all bedside and talking in the hallway of all of their favorite memories. We are thankful and recognize that we are in a position where we come in, get treated and can go home with the intent of beating this cancer. Others are not as lucky as we are  - may that sweet woman rest in peace. Sorry, a bit of a late night tangent, but an important one nonetheless. I digress... 
 
So, while we were very excited to get through the first treatment – especially since we now know what to expect – we are still very curious to see how these next two weeks go between treatments. We will feel much better when we know what to expect within the whole cycle and can manage accordingly.  So today was a baby step – but I’ll be damned if we aren’t going to celebrate it – this is a marathon not a sprint and we are still moving in the right direction. More to come…

Day 5 of chemo is complete! For those that are following along, that means our first session of treatment is all wrapped up. Unfortunately, there are some post-chemo drug treatments that require us to stay another night, so that has required some creative ways to pass the time. For example - there are 27 ceiling tiles in our hospital room. Cutting edge stuff right?

Tom has been sleeping quite a bit which means his body is busy ninja-ing (made up word?) this cancer. He also had a bit of a rough afternoon/evening, but while he was awake a bit this afternoon we decided to come up with the Best/Worst list for a 5 night stay at a hospital and figured we should share. In theme with our 5 night stay, we’ve done the top five for each – in no particular order: 
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It has certainly been an adventure as we started Day 4. Tom woke up feeling weak, very nauseous and in some pain. Not the greatest way to start the day when you've got a whole docket of chemo ahead.  I wouldn't say it was an easy day, but he did manage to sleep quite a bit today and let his body rest and fight the cancer. I'm SO incredibly proud of him as he forged on and got through the treatment today and even kept me laughing throughout it all. :) 

We were joking today at how goofy it is that we now celebrate the weirdest things like the removal of his heart monitor, less shots, test results, and the ability to take a shower. It really is all about the little things right now! Speaking of the little thing, tomorrow is the last day of chemo in our first session and we are VERY excited to finish this first round up and start our two weeks "off"...though rumor has it those will be very tough weeks and likely much worse than what we've experienced thus far. But...we will worry about that when we get there. One day at a time :) 

Have you noticed my theme with the post titles? Another day is in the books, and these days are certainly getting tougher as we get into the week. As you can imagine, the back-to-back days of chemo are what is really starting to catch up with Tom and making things a little bit tougher. There is quite a bit more fatigue since his body never really has chance to bounce back, but that of course is what kills the cancer as it continues to quickly try and grow.  

We've gotten a little stir crazy but are happy to be over halfway through this first treatment regimen! Since we don't have a ton to update on tonight, we'd just like to thank everyone for the texts, comments, emails, cards, etc. It really keeps us going through all of this and keeps us motivated. We are so lucky to have such wonderful friends & family :) 

We are exhausted...time for some sleep so we can crush day 4 of chemo!