Second, while we are very excited and grateful for the treatment coming to a successful end, we are also more anxious than we have been in a while. Pretty sure that's a trauma response... feeling scared to celebrate too much lest the universe decides to put us back in our place and make something bad happen again. I keep reminding myself that even if something bad does happen (which, let's face it, life is full of ups and downs and there's no way around that), I would be really upset with myself if I had wasted the good times giving into fear. Ryan and I were reflecting on this whole experience this week, and I told him that in my book, every single day will be a celebration from here on out. Everything we do will be a chance to lean into joy, be present and grateful.  

To sum things up, this experience has changed our lives forever, but we're ready to move on. Thank you to everyone who joined us (in person and virtually) to mark this milestone. It truly means the world. And if you couldn't make the Zoom, see the photos and videos below. Here's to many more celebrations to come!

This is also the last post for some time and I have one last favor to ask if you are able. On Monday, March 27th, at 12:30pm EST, right after I have my port removed, I'll be ringing the bell to celebrate the end of my treatment. Riley Children's Hospital has set up a Zoom link to join the celebration virtually and I'd love to share this moment will all of you. Of course, I understand that it's smack in the middle of the work day, so no hard feelings if you cannot join.

Set a reminder and come back to this post on March 27th at 12:30pm EST, and click the Join Bell Ringing button below.

Again, thank you all for all of your support helping me make it to this day. ❤️

First, I'm thrilled to announce that Anna and I are engaged! On a beach in San Diego, I asked Anna if she'd give me the pleasure of spending the rest of her life with me as my wife, and she said "Yes!". The plan was in progress since October when I talked it through with her parents. While I thought that I was being stealthy during the planning and even Anna's friends all thought she would be totally surprised, I momentarily forgot how smart Anna is - as she had been picking up on clues since early December. Regardless, it was a fantastic trip and I'm very grateful that her parents, sister, and some of her closest friends were all able to share the special moment with us.

Less than 24 hours after we arrived back in Indy, I went to Riley for my last planned IV and IT chemotherapy treatments! I've already also finished my last oral steroid treatments, so now it's just the oral chemotherapy pills until I'm officially done with everything on March 15th. I'm counting down the days... 26 left! On March 27th, I'll go in to get my port removed and ring the bell. I don't think it's hit me yet that I'm so close to being done.

This has been a long and difficult journey, but I am grateful for the love and support I have received from family, friends, and all of you. I'm so excited to start this new chapter with Anna.

Since the last update at the end of January, maintenance has been much, much better. No inpatient hospital stays and I only go into the clinic once a month for blood counts and once every three-ish months for chemo. The chemo visits can sometimes be a little rough; mostly because I feel completely back to normal, so it's much more of a physical and mental whiplash than before.

Anna and I escaped the cold in February and spontaneously booked flights to Ft. Lauderdale for a long weekend to officially celebrate me entering maintenance. We had some great food, did a boat tour of all of the mansions and yachts in the Millionaires Row and had plenty of beach time.

My work flew me out to San Francisco for a quick visit in March, which was my first time ever in California. It was so nice to meet my coworkers in person, who I had never seen outside of my laptop screen. They also recently renovated the office, so that was fun to check out as well.

Anna successfully knocked out of the park her largest event for work, the Mira awards, which was in-person for the first time since the pandemic started. She did a truly amazing job that took many months of planning by her and her coworkers.

For Anna's birthday present, she wanted me to take swim lessons since even though I grew up a mile from Lake Michigan, I went 27 years of my life not knowing how to swim. So after about 5 lessons, I can now successfully backstroke and kinda freestyle swim. Now, I'm way more comfortable in the water and won't drown.

The Evusheld injections I received seem to be working wonders. In April, our friends met up to celebrate a couple of our birthdays and, unfortunately, almost everyone there ended up getting COVID, including Anna. Anna ended up being fine, had only minor symptoms and tested negative a little over a week later. Thankfully, I never tested positive nor had any symptoms, though I did have to cancel a Denver trip to see some friends, out of an abundance of caution. A few weeks later, we also went to a family friend's wedding in Ohio, where a few people ended up catching COVID as well, including one person at our table. But thankfully, again, I never had symptoms and tested negative. 🙏 The team at AstraZeneca who made Evusheld needs a big raise (but I want a word with their marketing department who annoyingly didn't brand it as Evushield, since that would make too much sense).

Our highlight so far this year, though, has been our trip we took the week of July 4th. We flew into San Diego, California and stayed there for about 5 days, including the night of July 4th. We were able to enjoy some amazing food, watched the fireworks, lay out in the sun on Coronado beach and fell in love with the city. We then took a road trip up to Santa Barbara and spent the night doing a little wine tasting. We ran into Billy Baldwin at the winery, who starred in Anna's favorite TV show Parenthood, but we played it cool and he had no idea we knew who he was.

In the morning, we took off for San Francisco taking the Pacific Coast Highway, stopping at Big Sur along the way. We spent a couple of days in San Francisco, where we did some sightseeing of the Golden Gate Bridge, saw the entire city from the top of the Salesforce tower and ate some delicious food in China town with some friends - including Brady and Megan who did the same trip from San Diego and we were able to meet up with while we were there too! I was even able to stop by the office for an hour to see some coworkers who were there for a get-together and also met up with my cousin who I hadn't seen in several years.

Finally, to close out the trip, we flew to Minneapolis to visit my brother, Tim, sister-in-law and my nephews. I was able to catch a couple of my nephew's baseball games, toured their beautiful new house and spent some time in their pool showing off my new swimming skills. It was a nice gradual end to a long, busy trip.

Later in July, we celebrated Anna's sister's 21st birthday in Louisville. The next weekend, I was graciously invited to come with to Anna's annual summer vacation on Lake Cumberland, which was a ton of fun.

This last month, Anna's been busy with a couple of big work events which have gone extremely well, as expected. We also went to Newfields to check out the Lume's new exhibit of Monet and Friends with Anna's parents and saw John Mulaney. My work continues to go well.

In between the trips and other events, Anna and I have enjoyed several concerts this summer. It really has felt like between my health issues and COVID, we're back to how life is supposed to be for a 20-something-year-old couple. However, I'm still reminded that my immune system is very much still depressed and that I'm very much in active cancer treatment. I've had a cold I picked up during our California road trip that I still haven't been able to shake. I went into the clinic a couple weeks ago to get an IVIG infusion to hopefully boost my immune system, but that hasn't seemed to do much. But, hey! If a little bit of a cold is the worst, then I'm pretty happy all things considered. 😊

My parents on the other hand, haven't been doing so well. My dad has bladder cancer and, while he doesn't have to do chemo, his treatments have nevertheless landed him in the hospital a couple times in the last month or so. This last time it was for some clots in his lungs, so very glad they were small and he's now on blood thinners to hopefully prevent it from happening again. My mom on the other hand had appendicitis while traveling in Maine, where they found appendix cancer. So now, she is having surgery this Wednesday. If that goes well, then she won't have to do any other treatment. They're both staying with us right now, since she's having the surgery in Indianapolis. I'd really appreciate if everyone can keep them both in your thoughts and prayers.

Overall, though, it's been a truely amazing summer and I'm looking forward to making more memories with Anna the rest of this year. We have a couple of weddings later this year and are also spending a week in Folly Beach with Anna's family. I also recently booked my flights to São Paulo, Brazil in November for a work trip, which will be my first time ever out of the country, so I'm very excited for that. As far as treatment, I should only have two more chemo visits to the clinic left and, in March, will be completely done with treatment. 🙌

Again, thank you all for your support. Until then, no news is good news. Happy Labor Day!

He was covid negative but definitely had some kind of bad cold, and we ended up realizing his blood counts had dropped significantly when he woke up one morning with a nose bleed that wouldn't stop, prompting us to drive back to Indy a day early so that he could get platelet infusions at the clinic (the alternative would have been to take him to an ER in Louisville, which is pretty much the last place he needs to be right now given the covid situation). The drop in his counts meant he had to stop taking the chemo pills for a while, but the team at Riley assured us that this is fairly normal at the beginning of maintenance when his body is still bouncing back from a year of being put through hell. It will take a few tries to figure out the right dose for the chemo; ideally they will be able to keep his counts somewhat stable, without such dramatic dips (although still much lower than the average person).  

I will pause here to ask a favor of all of you: please donate blood if you can. If I had to guess, I would say Ryan has probably had around 100 red blood cell and platelet transfusions over the course of his treatment. If you imagine that much blood needed for just one person, and then picture how many people in our hospital systems also need blood, you can see how quickly reserves of blood are depleted. Add that to the fact that donations have plummeted during covid times (not to mention that many people - namely gay men - are actually still not allowed to donate due to extremely discriminatory and irrational policies created during the AIDS crisis), and that explains why the Red Cross recently announced the most severe national blood crisis in ten years. So please, find a local donation center or drive near you and donate ASAP - and then keep donating! It's really easy and you get the bonus of free snacks! The last thing healthcare workers and patients need to be dealing with right now is worrying about the availability of lifesaving transfusions.

So anyway, while the technical maintenance schedule would only have Ryan coming into the clinic once a month, he has actually been in at least once, sometimes twice, every week this month. And with the spike in covid cases, we have gone back to mostly laying low and staying home. Anyone else feeling déjà vu? I know we are all so burnt out and sick of this freaking pandemic. Trust me, we are exhausted from the constant risk analysis, second guessing and anxiety. I don't blame anyone who is fully vaccinated and boosted for living their life. But I do ask that we try not to lose sight of our compassion for our immunocompromised neighbors and for all the healthcare workers who are at the end of their rope. Be kind, wear a good mask in public, and understand that there are 7 million immunocompromised adults in the U.S. who don't have the freedom to be careless right now - Ryan included.

I do have some good news to share on the covid front, though. Two weeks ago, he received the Evusheld injections, which just received emergency use authorization in December and are made specifically for immunocompromised individuals for whom the covid vaccines might not have given as much protection as the average person. It is a preventative treatment for covid that can give added protection for up to six months, and if you haven't heard of it yet it's probably because there are very, very few doses available right now. It's extremely hard to come by, so we feel really lucky that Ryan was able to secure a dose (perhaps because I found an article on it back in early December that Ryan shared with his doctor before it was authorized, so she had it on her radar as soon as it became available). Hopefully the U.S. government will continue acquiring many more doses, because this could be a tool to help people like Ryan get back to some semblance of normalcy.

That being said, covid isn't the only thing that can knock you down when your immune system has taken a hit. Ryan picked up what we are assuming is a stomach bug that landed him in the hospital for four days this week because he couldn't eat or drink anything. His counts were fine this time, but they kept him on fluids to make sure he was getting nutrients until he could start eating and drinking on his own again. He came home on Thursday and has been taking it easy since then. I have to say, after everything we've been through, it's unsettling to have a hospital stay and not know exactly what the problem is (they tested him for a range of viruses and they all came up negative). It seems like every time there hasn't been an obvious answer for his sickness, it's ended up being something major, so we've both felt anxious and frustrated. We thought these days were behind us.

Last January, I wrote about being afraid to write anything into my planner after having so many plans ruined. This year, I am willing myself to make goals and plan things to look forward to, even though it's scary. Maybe this phase hasn't been as easy as we hoped, but I know there are better days ahead. Ryan is resilient, and he has a fantastic team looking out for him. And we have all of you! Thank you for continuing to pray for us and send positive energy our way. We're grateful for you.

Last week, I started radation therapy which will finish on Friday of this week. The appointments are super quick, and so far, only side effects have been nausea and a slightly decreased appetite. Oh, and I can finally understand what Luna is saying ("more food, please"). During the appointment, they put a mask over my face which locks it into place. Definitely wouldn't recommend if you were claustrophobic! The doctor didn't expect for me to have very many long-term side effects, which is an increased risk with radation therapy in particular. Hopefully, that holds true.

Earlier in my diagnosis, I was able to get connected with someone who had been diagnosed a couple years before me and was in the maintence phase. At the time, I was in induction and my head was still reeling from how my life was turned upside down. I took great solace when he said "my cancer isn't the first thing I think about when I wake up". I think that comment has been the light at the end of the tunnel for me and I'm looking forward for when I can say the same shortly.

P.S. Please excuse any typos (or failed attempts at humor), as normally, I'd have Anna proofread, but she's enjoying some wine with friends at the moment and I couldn't wait to share the news.

One year of successful treatments. One year of cards, care packages, and DoorDash gift cards sent from family and friends far and wide. One year of prayers, and one year of growth. One year closer to putting this behind us.

A quick update on the treatments: Ryan started Interim Maintenance 2 on October 4 and it's been going fairly smoothly other than quite a bit of nausea. He now has two chemo appointments left in this phase, and then he will start Maintenance in early December. That's a milestone that we've been wishing to reach as soon as possible, and now that it's within reach we've realized that, while yes, we will enjoy having more control over our lives, less frequent treatments, and the chance for Ryan's immune system to heal, the emotional and mental scars from this experience will take time to fade. Nevertheless, we can see the light at the end of the very long and winding tunnel, and that is something to celebrate.

We are grateful for your love and support, and want to say thank you in advance for your continued prayers and positive thoughts sent our way. This is not an easy road and there will continue to be challenges, but hopefully the load will lighten a little each day going forward.

Thankfully my stay at the ICU was brief. Throughout last Saturday, they successfully weaned me off of the blood pressure medication. Around midnight they transferred me to the hemoc floor and I was finally able to get some sleep.

My blood cultures were negative, so they treated me for "culture-negative sepsis" which meant that they needed to keep me on antibiotics longer than they typically do (until my ANC recovered above 500). Since my immune system is still suppressed due to the cumulative effect of the chemos in the last phase, they kept me in the hospital. I was feeling much better on Sunday and charted an ANC for the first time in several days. Normally, I would have had to wait until my ANC had rebounded enough to send me home. But, since we had already had some experience doing antibiotics at home, they allowed me to go home with the IV antibiotics which I'll be on until my ANC is over 500.

I'll officially start the next phase of my treatment, Interim Maintenance II, on October 4th. My doctors allowed me to push it back so that I could spend a week to get started with my new job (more on that in a second). This phase will have a few different rounds of methotrexate - the drug that ended up giving me neurotoxicity where I couldn't speak a few weeks ago - administered intrathecally (through spinal taps) and intravenously (through my port). Because of the neurotoxicity, they're going to use a different kind of chemo for the spinal tap (for at least the first one). They're not concerned I'll have any issues with the IV doses since they will be much smaller than the ones I received during the previous Interim Maintenance I phase and shouldn't cross the blood-brain barrier. Regardless, they're going to give me some leucovorin (folinic acid) which will make sure any residual methotrexate doesn't have an undesired effect.

Oh, and as far as my job goes, I'll be working as a product manager for a company called Twilio, which makes tools that allow developers to programmatically send texts or make phone calls. I'll be working remotely and am looking forward to it. It'll be an adjustment to get back into the workforce full-time, but I'm excited to get back to having a more normal schedule.

Thanks for thinking of Anna and me through the craziness of the last few weeks.  It's reassuring to know how many people are rooting us on through this time in our lives - we couldn't do it without all of you.

We were in the ER for 7 hours, during which Ryan didn't speak a single word and became completely disoriented. He couldn't use his phone, he couldn't write anything, and he couldn't respond to questions or prompts. He had a CT scan that was clear, and then a fast MRI that showed he had neurotoxicity from methotrexate, one of the main chemo drugs he has received through the duration of his treatment. I'll jump to the punchline, which is that for some weird reason, Robitussin (yes, cough syrup) is the antidote to that side effect. So Ryan was admitted on Thursday night and by Friday morning he was speaking again. That said, I do think it's worth telling the story of our ER experience in case it might give some insight to someone down the line.

If I were to come up with the perfect setting to make someone go absolutely insane, it would be a hospital emergency room. That's not to say I don't deeply appreciate all of the hospital staff and the medical care they give, but I've never had an ER experience that wasn't painfully long and frustrating. The beeping, the endless repeating yourself, and the waiting, waiting, waiting all makes it totally maddening. On this particular day, they took him back right away - the clinic had called ahead to tell them we were coming - but when I was checking him in, his chart wasn't coming up. When they put his name in, the computer was showing that he had never visited Riley or any IU hospitals before. You can imagine how frustrating it was for multiple people to ask if he had ever been there before when he has visited Riley at least once a week for ten months. This continued for a couple of hours, which made the questions even more never-ending than usual because they were asking me things that should have been answered by abundant records (think - What medicines is he on? What treatment has he received? Does he have any medical history we should know about?). On top of this, Riley is a teaching hospital, so there are a million people everywhere, all of them talking and asking the same questions. Again, I appreciate the medical care and the value of hands-on learning, but it can be extremely unnerving to deal with interns who literally just started this summer and haven't quite mastered the ability to conceal their stress levels or talk to us in any sort of organized fashion.

At one point I called the nurse out of desperation because Ryan kept gagging (he couldn't swallow his own saliva) and acting agitated. A new nurse came in (the prior nurse had not told us they were leaving) and asked what was going on. I explained that I needed help and I couldn't figure out what was wrong because he couldn't speak, and she asked, "Is the speaking thing new?" Now I know she had just gotten there, but how are you supposed to provide informed care if you don't even read the chart before you walk into the room, enough to know the sole reason the patient is there in the first place? We had been there for at least 4 hours at this point, so I think she could see the steam coming out of my ears.

All of this added to the stress and fear, along with the fact that no one was comforting me at all. Even when they figured out what was wrong, all the neurologist said was, "We're seeing changes in his brain caused by the methotrexate." As someone with no medical background, the questions immediately running through my head were of course, "Is he going to have permanent brain damage? Is he going to speak again? Does he even know what's going on right now? How is this going to impact his longterm treatment plan?" I honestly don't think I felt relieved at all until we were settled up on his usual hematology-oncology floor and they told us they see this type of thing enough not to be too concerned about it, and they had no reason to believe the effects would be longterm.

Suffice it to say, I freaking hate the ER. Ryan doesn't remember much of anything from that day, lucky for him. For me, it was extremely traumatizing and also a scary reminder of this time last year, when he first got sick. His first symptoms from the Leukemia were stroke symptoms - including aphasia - so there's already quite a bit of trauma and anxiety associated with that.

Thankfully, Ryan's brothers, Marc and Tim, were able to be with him in the hospital for the weekend and encouraged me to take a much-needed mental break. Anyone who has been in a situation like this before knows that caregiver burnout is a very real thing, and it's hard to take care of yourself with the constant ups and downs.

So Ryan ended up coming home on Sunday, September 5, and has continued taking Robitussin twice a day until further notice. He went into the clinic on Tuesday and received his last chemo dose of this phase - Hallelujah 🙌 - and we hoped he would be on the up and up going forward.

Unfortunately, (see, I told you this wouldn't be uplifting) we ended up back in the ER yesterday (Friday... why does it seem like he always gets admitted on weekends?!) because he spiked a fever that got all the way up to 103.9. His counts are all extremely low right now, meaning his immune system doesn't have much to fight with. His blood pressure also dropped quite a bit, so last night they decided to admit him to the ICU instead of the hem-onc unit. They explained that this is just because the ICU nurses are more familiar with the blood pressure medicine he needs, and the hem-onc nurses wouldn't be comfortable managing that. This morning his fever has gone down and his blood pressure has improved. Even if both of those stay at baseline, he will remain admitted so that they can continue administering antibiotics around the clock to fight whatever potential infection might be causing these symptoms. They are currently weaning him off of the blood pressure medicine with the goal of moving him to the hem-onc unit.

So, all in all, it's been a rough two weeks. I'm hopeful that this is one of the last major hurdles we have to overcome before he starts feeling better, but it seems like every time I say something like that the universe has other plans. I asked Ryan if there was anything he wanted me to include in this about how he's feeling, and he just said, "Exhausted." Yep, that about sums it up.

Now that I have sufficiently depressed anyone who has read this far, I'll leave you with some good news... in the middle of all of this craziness, Ryan accepted a new job offer! I'll let him share more about that when he's able, but right now we need everyone to send as much healing energy and good juju as possible so that he can recover and start work (remotely) in a few weeks.

Thank you for reading, praying, and supporting us through this mess. We appreciate you all!

Ryan started Delayed Intensification on Friday, July 2. This phase has been pretty similar to the one he went through back in the winter, so not fun. In mid-July I was traveling to Savannah and Hilton Head for a family wedding and vacation, so Ryan's mom came down to be with him for a week. Unfortunately, the night after she got here, Ryan had to be taken to the ER at Riley because he spiked a fever. After some chest X-rays they determined that he had the beginning signs of pneumonia. Luckily they were able to put him on some antibiotics and send him home late that night, and the antibiotics ultimately helped clear things up. It's pretty anxiety-inducing to leave him when things can go south so quickly, so I'm grateful that his mom was here to take care of him while I spent time with family.

This phase brought back the dreaded steroids, which came with quite a bit of bone pain for Ryan, so the heating pad was his friend. In the middle of the phase he got delayed for a couple weeks due to low counts, but he started the second half of the phase on August 16. The past couple of weeks he's had a lot of nausea (thanks to the at-home chemo shots I have to give him) and has been getting more fatigued again, but to his credit he has kept up an impressive level of activity, even going through about 5 hours of job interviews in the last week and driving himself to physical therapy. He has needed a few blood and platelet transfusions, which brings me to my first request of you all: please donate blood if you are able. There has been a national blood shortage this summer, which has very real affects for people like Ryan (e.g. when he goes into the clinic they're more picky about who they give it to), so every donation truly counts.

My second request is that you get the COVID-19 vaccination if you haven't already. The FDA recently approved a third COVID vaccine dose for certain groups of immunocompromised people, so thankfully Ryan will be able to get that in a few weeks once he finishes this phase and his counts go up a little bit. That gives us a little reassurance, but it's still not guaranteed to give him the same protection that it gives the rest of us. So, if you're not vaccinated already, I am actually begging you to please do so as soon as possible. I can't begin to describe how terrifying and infuriating it is to see that hospitals are having to turn away cancer patients because their beds are full of people who have CHOSEN to remain unvaccinated against the advice of healthcare professionals and are now taking up medical resources once they get extremely sick. Even people who are vaccinated aren't guaranteed not to get it, but your chances of getting it, spreading it, and taking up valuable hospital space are WAY lower if you have the shot. It's the only way we're going to get this virus under control, and immunocompromised people like Ryan are counting on other people to be responsible. Here are a few resources if you want to know more:

Different COVID-19 Vaccines

Overview of what you should know about the different COVID-19 vaccines, including vaccine types and how they work to provide protection against COVID-19.

Centers for Disease Control and PreventionCDC

Coronavirus Disease 2019

CDC provides credible COVID-19 health information to the U.S.

Centers for Disease Control and Prevention

Get the facts about COVID-19 vaccines

Find out about the COVID-19 vaccines, the benefits of a COVID-19 vaccination, the possible side effects and how to prevent infection.

Mayo Clinic

In all honesty, sometimes I feel like I'm living a double life these days, or just floating in a weird state of limbo. My company has gone back to the office a couple of days a week, and although I've enjoyed seeing my team in person and getting out of the house a little bit, it has made it more difficult for me to get Ryan to his appointments and to be around if he needs anything. (Luckily, my office is only 5 minutes from both the hospital and our apartment, for which I am very grateful.) As an event manager, I was very excited about the return of in-person events, but it seems like we only had about a month or two of feeling safe before everything started going downhill again due to the Delta variant. Ryan told me the other day that he is exhausted by all of the mental calculations we have to do on a daily basis to determine if any given activity is safe for him. Will people be vaccinated? Is it outside? If it's inside, will people be masked? Will they be taking masks off to eat and drink? How effective was his vaccine? Are his counts high enough that if he did get sick he would have a chance at fighting it? How far can we travel without it being an issue if we had to rush back? Are there open beds at the hospital if it came to that? These are just a few of the questions we ask ourselves on a daily basis. Not to mention that every time I get a slight sniffle, I have to resist falling into a total anxiety spiral that I'm going to get him sick (and for someone with seasonal allergies, this is a daily thing).

A few weeks ago, my family came to visit us, and we both agreed it was one of the best weekends we've had all year. We spent lots of time outside in the sunshine, we attended an outdoor concert, we ate good food, and all around it felt ~normal~. But right after they left, Ryan shaved his head because his hair was falling out again after finally growing back. Between that and everything else it all feels a little like deja vu. It's safe to say we're both ready for this all to be over with and move the heck on with our lives.

Looking ahead, there are two more weeks of chemo in this phase, and then after a week-long break in between he'll enter Interim Maintenance II (check out one of our previous blog posts for a refresher on what the different phases entail). That will last about 6 weeks (maybe a little more), and then if all goes as planned, he will FINALLY enter Maintenance almost exactly at his one year anniversary of being diagnosed. We can see the light at the end of the tunnel but we're not quite there yet, so please send us all the positive energy that you can for the next couple of months. As always, if you want to know other ways to help, check out our FAQ page. Thanks for reading and keeping us in your thoughts - sending love to you all!  

This duality of "staying positive" while also realizing it's okay to be frustrated and sad at times has really been expressed in these last 3 months while going through Interim Maintenance I. It's really pushed me to be as comfortable as possible with being forced into the passenger seat of my life for all of its ups and downs.

We last gave an update after my first chemo (i.e. planned) admission during this phase. Since then I've had three more chemo admissions. Obviously, each hospital visit has been unpleasant with nausea, lack of appetite, mucositis, and fatigue. Thankfully, those symptoms have seemed to resolve almost completely after being home for a few days.

While each of my four admissions had been originally scheduled for every two weeks, all of them were delayed by at least a week due to my platelets being too low. Even though I'd rather get this all over with as soon as possible, this extra time aided in my recovery between visits and gave me some time to do more "normal" things while I was feeling well. My brother Tim and his family came into Indy for a visit and I was able to spend time with them, which wouldn't have happened if I was stuck in the hospital (due to COVID visiting restrictions). I was able to see my parents in person(!!) for the first time since my diagnosis while we spent time with my Mom's family to celebrate my Grandma Mary's life after her passing. I was originally supposed to spend my 26th birthday in the hospital, which would have been super lame, but thanks to my low platelets Anna and I were able to have dinner outside at one of our favorite Italian restaurants (the first time since COVID started) and spent the following weekend exploring Cincinnati just for fun. I was able to join Anna as she was a bridesmaid in her cousin's wedding in Kentucky. Thanks to the amazing vaccines, we even were able to hang out with several of our friends as they celebrated the beginning of summer, homeownership, being done with med school, etc.

I also started both occupational therapy and physical therapy in April, which has really helped me to recover a lot of the strength that I lost. I've made so much progress that I haven't needed my leg braces for the last couple of weeks, and I have finally felt comfortable driving again. 🙌

However, unfortunately, late in April, the cofounders at the startup I was working at decided they needed to lay off most of the company - myself included. Thankfully, due to the Texas state continuation ("mini-COBRA") law (where the company is based), I'm able to keep my health insurance for the remainder of the year which was a huge relief. (A quick aside - if that company was based in Indiana or the five other states where no "mini-COBRA" laws exist, then I wouldn't have been able to stay on the same health insurance plan and would have been forced into the individual health care market.)

So yeah, there have definitely been plenty of ups as well as downs in the past few months, but overall I'd say it's been a good couple of months.. all things considered.

So what's next?

Yesterday officially concluded the end of Interim Maintenance 1, and I was scheduled to start Delayed Intensification today but was delayed (ironically) until next Monday due to low platelets and ANC. Delayed Intensification will be roughly 2 months long and this phase is going to be much harder on my body than the last one. While the treatment is all scheduled to be outpatient, I'm likely to see my counts drop more than I did in the last phase due to the more potent chemo drugs. This means I might still have to spend a few nights in the hospital at some point if I run a fever and will probably need at least a couple of blood transfusions at some point. Also, only the first week and 5th weeks are count-dependent, so I won't get breaks in between the weekly transfusions as I did in IM1. On the bright side though, it should hopefully mean this next phase actually does only last two months instead of turning into three.

I am a little anxious about this next phase since I'm currently feeling about the best that I have since last August and I know the next two months aren't going to be fun. It's been nice being able to be more self-sufficient lately, building up the strength I had previously lost, and I know I'll likely be weaker again for the remainder of the summer. Once I'm through this next phase though, I should hopefully get another little break with Interim Maintenance 2 (which will last another couple of months), before having radiation treatment for two weeks, and then I'll finally be in Maintenance where things should get much easier.

Anna or I will try to touch base and give an update in a few weeks on how Delayed Intensification is going. In the meantime, if you're wanting to know ways to help, check out our FAQ page. Thank you all for reading and keeping us in your thoughts! Also, don't forget to subscribe if you haven't already so that you'll get the next update in your email.

FAQ

How can I help?First and foremost, keep sending positive energy our way! One thing that has really been helpful are gift cards for lunch or dinner so that we don’t have to worry about it. We love Subito Soups and DoorDash is great too. For those of you in

Giving It My ALLRyan Krueger

This is the phase where he gets admitted to the hospital for several days every two weeks. We were initially told that 3-4 days is standard for them to administer the chemo (high-dose methotrexate) and then monitor him and keep him on fluids until it's mostly flushed out of his body. However, it turns out that can sometimes take more than a week and there's really no way to predict it. Since it's not a certain level they're shooting for, but the rate at which the level of methotrexate in his body is decreasing, he ended up spending a full 7 days in the hospital again waiting to hit a moving target. The doctors said that although annoying, this was nothing to be concerned about and it's not necessarily an indicator of how the next three admissions will go.

I'm very grateful that Ryan's sister Lisa came to stay with him for most of that week so that I could go out of town for a few days. It was hard to be away after being in this little bubble together for so long, but I was thankful that Lisa made the time and effort to make it possible for me to spend some time with friends and have a few days of "normalcy" - whatever that means anymore.

We've had some beautiful weather in Indy lately, so we try to get outside and walk as much as possible. The fresh air makes a world of difference, and it helps to see the light at the end of the tunnel a little more as spring comes around. We're watching lots of basketball and enjoying the view of the world's largest bracket from our apartment. We even got out for a long walk last night to see all of the March Madness festivities and check out the new Bottleworks District - the first time we had walked around downtown in about 6 months.

Today has been a big day for multiple reasons:

1. Ryan had his port de-accessed (the needle taken out) for the first time in a month and a half. When it's accessed, it can be tender and itchy, and he's not allowed to take real showers or get it wet at all, so he's very excited to be "free" if only for a couple of days before he goes back in for treatment on Wednesday.

2. He got his second vaccine dose! Although there isn't really data right now on how effective the vaccines are in cancer patients or immunocompromised people, the timing actually worked out quite well where his counts are a lot higher right now than they have been. This won't change his behavior too much, but still gives a little peace of mind that we're both fully vaccinated now. We're also very excited that anyone 16+ in Indiana is eligible for the vaccine starting this week, so hopefully all of our friends will be able to get the jab soon. The next few months will probably be kind of bittersweet as other people start to go back to normal, but we do hope we can see our friends a little more. We're learning to celebrate the little things as much as possible. There might not be one day where everything suddenly goes back to "normal," but there will be moments and improvements along the way that will get us through.

Other good news:

When Ryan got a spinal tap at the beginning of this phase, it still showed no sign of cancer cells in his spinal fluid (meaning the treatment continues to be effective). They expected this result, but it was still a relief after his treatment being delayed and having so many unexpected twists and turns recently.

His foot pain also seems to be getting better and his mobility is improving each day. He's on a different medicine for the neuropathy now, and it also helps that he's recovered mostly from the appendectomy so he can use his core more now. He commented the other day that he didn't really have time to process the fact that he has to wear leg braces now. That seems to be how this all goes - things change so quickly, you don't get a chance to process until later.

He never asks for praise or acknowledgment, but you all should be very proud of Ryan. He bounces back from tough situations unbelievably quickly and perseveres through physical and emotional pain with a positive attitude. His 26th birthday is exactly one month from today, so if you could all send out wishes into the world for a great birthday month, no one deserves it more.

My ultrasound on Tuesday showed an abscess where my appendix had ruptured, so I had a procedure on Wednesday to drain the infected fluid. The procedure went  well, but since they had found the abscess, it meant I'd need to be on IV antibiotics for at least 10 days.

I figured that meant I'd be in the hospital for close to another week. However, thankfully modern medicine is pretty amazing and they arranged for me to do the IV antibiotics at home! They delivered all of the supplies and my medicine to our apartment. Then, after I was discharged on Friday and all settled at home, Anna and I FaceTimed a nurse who walked us through all the instructions. The medicine comes in these pressurized spheres and the line connects straight into my port in my chest. It's a really slick system and honestly couldn't be much easier, which was really relieving.

While in the hospital, I was able to spend some time with physical therapy and occupational therapy. They gave me some exercises to help rebuild the strength I've lost (a combination of losing ~30 lbs. since my diagnosis, spending so much time in a hospital bed, and my neuropathy due to chemo), which  has made it hard to walk, open containers, or hold a full coffee mug. They also casted my feet and legs to make AFOs, which will help me walk more normally for the time being until my nerves and muscles recover. A big thank you to my sister-in-law, Erin, for picking me up some shoes tonight to try on with the AFOs, so I can make the most of the nice weather this week.

I'm also pretty thankful that my nephews were kind enough to loan me their dad, my brother Tim, for this past week. After I spent the weekend with my other brother, Marc, and Anna on Monday, he drove all the way from Minnesota and was able to spend Tuesday through Friday with me in the hospital. He's an anesthesiologist and incredibly knowledgable about all-things medicine. As such, he was able to guide me through the whole process this week, made sure I stayed on top of my PT/OT exercises, bought me some yummy carryout, and kept me company. Only downside was that I had to listen to a little more Radiohead than I would have liked. :)

Looking forward to the week ahead, we'll continue to do these IV antibiotics at home until I go into the clinic on Friday. If my scans show that the abscess is gone, and if my counts are looking good, I might be able to finish with the antibiotics and continue my treatment the following Monday. Continuing my treatment means I'll be back in the hospital for roughly 3-days, but that'll seem like nothing now. Also on Friday, I'm scheduled for an MRI of my feet and ankles for my standing foot pain - which makes it look like I'm incredibly impatient while waiting for an elevator, since I pace around to help relieve the pain.

It's frustrating that while February was so unexpectedly eventful, since it delayed my treatment, we still have roughly 6 more months before I reach the much lower intensity maintenance phase. But, we continue to take it day-by-day and appreciate the good days. This weekend has been the best one in a while, with lots of Modern Family, good food and fresh air, thanks to this amazing weather we're having. The nice thing about being appendix-free is that's one less thing I'm dealing with now - can't say I miss it!

As always, thanks to everyone for the well wishes and support. Fingers crossed for an uneventful week at home and a smooth appointment on Friday.

So yeah, after that last 12-day hospital stay, I finally made it back home last Wednesday afternoon. I came home, took a long nap, and then Anna and I watched some Modern Family in our quest to re-watch all 11 seasons.

On Thursday, I was hoping I'd be feeling a little bit better, but instead I was quite drowsy. Around 5pm, after sleeping about the entire day until then, I figured I should probably call the nurse coordinator at Riley and see what could be causing my drowsiness.  She quickly called back and asked if I could come over to Riley to have my blood counts checked. Ugh! I was barely home for 24 hours and now it's back to the hospital. (Big shout out to my friend Lucas Morgan for driving me to Riley and giving Anna a break.) Thankfully, my counts were fine and they attributed my drowiness to a new appetite stimulant. Since it's a little hard to eat when you're sleeping, they told me to quit taking it and hopefully I'd be less drowsy tomorrow morning.

Also, while I was there and they were running the labs on my blood, I conveniently was able to get an X-ray of my foot to check for fractures. I have this new issue where when I stand in the same place for more than a few seconds, my foot starts to hurt with some pretty severe pain. (As if I don't already have enough issues!) The X-ray was negative for fractures and this pain continues to mystify my team. Thankfully, though, I'm able to resolve the pain by walking in circles or sitting down and it doesn't require any pain medication.

On Friday morning, I did seem a little less drowsy, but my stomach was hurting really badly. During the night, I woke up due to the pain, but really didn't think much of it since I have been struggling with stomach pain on and off since the start of treatment. However, when Anna went to hug me in the morning, I screamed out in pain since my stomach was so sensitive. Later, I also started getting these shooting pains, so I figured it was time to call the nurse coordinators at Riley and see if they could help me navigate what to do. I left a message and a few minutes later the nurse told me I needed to come in to the ER as soon as possible. They were afraid it was appendicitis. "You're joking," I said to the nurse. I couldn't believe my luck was that bad, but she assured me that my symptoms matched and they needed to at least rule it out. So, Anna cut her meeting short and drove me to the Riley ER.

Once checked in at the Riley ER, my pain started to get much worse. One of the doctors pressed on my lower right abdomen and I yelled out in extreme pain. "Well, that's enough for me, but we'll get you to ultrasound soon," she said. So much for a couple of restful days at home.

After the ultrasound, one of the doctors from surgery came to see me and told me it was indeed appendicitis and I'd need to have surgery later that day most likely. Then, all of a sudden, hospital time went from moving normally to moving about the fastest I've ever seen it.

A short while later, I met the surgeon that would be performing my appendectomy. He mentioned that while a typical appendix is 7mm and the ones that he typically removes range from 9mm to 14mm, mine was swollen to a whopping 17mm. Needless to say, they were prepping an OR for me and I was going to go into surgery within the next hour. They started giving me platelets, since my counts were low still, and quickly whisked me away to the pre-op area. Surgery is risky enough, but surgery on someone with low platelets and who's immunocompromised is much riskier. But unfortunately, my appendix wasn't waiting around for my counts to go up, like we were only a few days ago. Anna was a champ though through all of this craziness and between her and the pain meds, I was mentally prepared to get this appendix out of me.

. . .

Thankfully, the surgery went well and I woke up from the anesthesia a couple hours later! Unfortunately, my appendix had burst, but the surgeon was able to keep it fairly contained. I was moved upstairs to my 2nd home and saw some friendly, yet all too familiar faces.

So after another weekend at Riley, and yet another week of my treatment being delayed, Anna and I lay here watching some more Modern Family - not at our home of choosing, but at Riley. We'll find out how long we'll have to be here this time tomorrow, after they do another ultrasound to see how long I need to be on antibiotics due to the ruptured appendix. On the bright side though, we have the big room this time; I made the mistake of asking how one gets it the last time I was here. Be careful what you wish for I guess. :)

Ryan is still not feeling very well, but glad to be resting on the couch at home rather than in a hospital bed. As of now the plan is still for him to go back into the hospital this Monday, the 22nd, to start Interim Maintenance 1 (as long as his counts meet the threshold needed to re-start treatment). While he's not looking forward to turning around and going back in so quickly, a 3 day admission will hopefully seem like nothing compared to this last one.

Thanks for your continued prayers and support from near and far. It means more than you know!