Day 23: More Chicago Pictures

Here are some more pictures I have from my time in Chicago.

This was outside my hospital room 674.

This was the view down the hallway.

Below is photo of Carol and I. Carol was a Nurse Practitioner who took me under her wing while I was there. Very nice lady.


Each hospital room has its own white board to keep track of the Nurses, Doctors, Housekeepers, or other general notes. My Dad wrote 'outahere' on mine the day I was leaving to finally come home.

This was a note I left for them as I was leaving.

Day 22: Pictures from Chicago

I thought I'd take a moment and show everyone some pictures that were taken at the University of Chicago while we were staying there. I'll post a few more over the weekend as well.

The first one is a view I had from my window in my hospital room.

This is another view of one of the entrances.

This is a shot taken directly in front of my hospital bed.
(Notice the laptops and Xbox...courtesy of my brother Justin and Dan Rousseve. It wasn't all bad!)

We had the corner room on the 6th floor, so there wasn't as much room as we would've liked, but the view outside was much better. More to come Saturday and Sunday.

The Road Here: Part TWO

As the news fell over us and our family, tears swelled, and fears rose and fell. After telling everyone to go home, sleep in their own beds and rest, I remember being left alone that night in the hospital, feeling so scared and alone. Thank goodness LOST was on...it honestly helped get my mind off Leukemia. I was angry, scared, hurt, in denial, and wondering what the next few days were going to be like. It's not every week your life gets completely rearranged.

The next question we had to answer was where we going to go to get treatment. Since there had only been 1 or 2 cases like mine in the South Bend area in the past year or so, Dr. Park suggested we go to a University that specialized in the kind of Leukemia that I have. Some of the choices included, Indiana University in Indianapolis, M.D. Anderson in Houston, Cleveland Clinic, or Mayo Clinic in Minnesota. After we did a HUGE amount of research, (my wife mostly) we all decided that the University of Chicago was the way to go. Dr. Park did his residency at the University of Chicago, and was able to quickly set up an entrance strategy, so that I could be moved there almost immediately.

On January 23rd, 2009, one month after a dreadful trip on some metal stairs that started it all, I was on my way to the University of Chicago for a month's stay.

Having two dogs at home, one of which was barely 3 months old, complicated things, but my wonderful Mother in Law Susan, who I call 'Susy', stepped up and took care of everything for us at home. I'm truly grateful for all that she has done and probably will do. She has a special place in my heart.

The ultimate goal is to get my Leukemia into remission in the first 30 days. I'm a little over halfway there. I have since returned home from Chicago, but we still commute there on Mondays to receive my chemotherapy. That schedule will probably remain intact for the next few weeks. My big day is a week from this coming Monday. At that point, they'll do another bone marrow biopsy to see if treatment eradicated the Leukemia. If that happens, which we're all hoping it does, I'll start on the consolidation chemotherapy for the next 6 months, and then maintenance chemotherapy for 3 years. Some of that maintenance treatment, we're told, might be done here by Dr. Park's office, therefore saving some driving between here and Chicago.

Thank you all for reading my blog and for your continued, unmeasurable support. I have been truly taken aback by the amount of support, care, and kindness Katie and I have received in the last two months. I am using your strength to help get me through this every step of the way. I wear the 'RELENTLESS' bracelet, because that's what I choose to do. It's the way I choose to be, because giving up with all of you standing by my side, would be a waste of a good life. And I'm better than that. I'm relentless.

The Road Here: Part ONE

A lot of people who are reading this blog including friends and family might not exactly know how I got to this point with the diagnosis and all that. Most of you have been just faithfully following along, and I thank you for that. I'll try and clear that up now. My wife is much better at dates than I am, so I will clarify these with her beforehand.

December 23rd, 2008 was the last day of work on campus for those of us who were still there and not already on vacation for the Christmas break. Things were quiet in our Sign Shop that afternoon, even though it was still very snowy and icy outside. I decided to go out back for a cigarette. Our building has a back door with a metal grated set of stairs heading down with a railing. The stairs are essentially 'see through' and very textured. Naturally, with the all the ice and snow we had had, ice was bound to build on these stairs and become a hazard. I had slipped on them dozens of times before. But this time was different. I took my first step down, immediately lost my footing and came down lower back first, on the first step. Hurt like hell. I gathered my composure, rubbed it out, finished my smoke and went back inside. Everybody falls...right? Big deal.

As Christmas passed and we stayed home resting, the pain in my lower back from the fall never really seem to get better. The following Monday, the 29th I put a call into the doctor to see if maybe I'd broken something. That afternoon, my wife and I went in and sure enough, I had broken rib #11 on my lowest left side. Awesome. I've never broken a major bone before, so this was kind of cool. A few pain med prescriptions later, we were on our way home.

During the next week, I began to notice a dramatic difference in my energy levels and my breathing. Simple tasks wore me out. (i.e., showers, washing dishes, etc.) They would tire me to the point of shear exhaustion. My wife and I did some research and determined that I could've gotten pneumonia from the broken rib. On January 5th, I returned to work at Notre Dame, and worked through that week even though I was exhausted. Things still weren't getting better the next week, so Tuesday, January 13th, I called my doctor again and explained to him my situation with the breathing and energy levels. His office squeezed me in that afternoon to follow up further. That afternoon, they did a chest x-ray and found that I had pneumonia in my right lung. They put me on a 5 day high dose of antibiotics, thinking that would kick it, and wanted me to follow up in a week to see how I was doing. Okay...makes sense. I was off work the remainder of that week.

The night of January 19th, 2009 was the night that things really started to change in our life. My wife and I were getting ready for bed, when I realized I couldn't catch my breath just lying there. I started to get worried. I changed positions, sat up, but nothing helped. It felt like I had just run a mile and couldn't catch my breath. About 15-20 minutes later, the seriousness had grown to fright, and we decided to go to the emergency room. (This was the same night the neighbor came to our rescue when Katie ran her car into the snowbank trying to move it.)

It's after 11pm, and Katie and I are speeding off to the ER, not knowing what to expect. We arrive at St. Joe Med Center and I run in. Immediately, they took me into care to find out what was going on. By this time, my chest was hurting so bad from wheezing, I couldn't take deep breaths at all. We explained to them about the rib and the pneumonia and all that. Obviously, they started with a chest x-ray to find out what was still going on. Oddly enough, the x-ray came back clear...with no pneumonia! Still a little baffled, they decided to do a CT Scan of my chest to check for clots in my lungs or anything out of the ordinary. It was at this point where they finally administered some pain meds through an IV, and because it lifted the pain from chest, I was able to take deeper breaths and it ultimately slowed my breathing down to almost normal. The CT Scan took place and came back clear. Now everyone was confused - including us.

When they were first doing the chest x-rays they had drawn blood to do a CBC, and the results showed that my hemoglobin count was very low (hemoglobin is the little tanks in your red blood cells that carry oxygen to all parts of your body). My first lab came back at 8.4, so they drew more blood thinking it was a mistaken reading, and the 2nd lab came back at 7.3. For some reason, my hemoglobins were disappearing and that was the reason I was feeling that way. Normally, when a person's levels drop that far, they're given a blood transfusion.

Around 2am, January 20th, they had secured a room for me and I was admitted into the cardiac unit of the hospital. And later that Tuesday, I got a blood transfusion and was able to speak with my regular doctor about what the heck was going on. He was basically clueless, so he decided to bring on a colleague of his named Dr. Park to help him with my situation. Dr. Park is a Hematologist/Oncologist who works in South Bend as well. He essentially took the reins on my case from that point out. Dr. Park was very kind and informative about the tests he wanted to run, and what his suspicions were. One of which, was obviously Leukemia. Of course, none of us thought it was that... but we were open to any conclusions. That day he gave me a bone marrow biopsy. The problem with biopsies like that, is that the results take a few days, so we wouldn't know anything for a least a day or two.

On January 21st, I was released to a better room in the hospital with my own bathroom. That afternoon, Dr. Park delivered the most shocking news I've ever had in my life. 'You have Leukemia, and you need to start thinking about where you want to get treatment.'

Stay tuned for Part II.

Day 19: Emotions Awry

It's always funny living in a suburban community, where you're nestled in a house between others like yours, involving waving neighbors, and matching mailboxes. Because I'm usually a pretty 'outdoorsy' kind of a dude, I know the neighbors, they know me, and to some extent, we sort of know eachother's schedules. (But not in a nosy kind of way.) In early January, my wife and I were heading into the emergency room because of my difficulty breathing one night, when she got the car stuck in the road near the end of the driveway. Thankfully, one of our neighbors had just gotten home, and helped us get un-stuck before we sped off to the ER. Just a few minutes ago, my wife goes outside to get the mail and is approached by the same neighbor who got us un-stuck not so long ago, and asks how I've been, 1) because he hasn't seen me outside; 2) heard that I broke my arm from another neighbor! Hahahaha So, all in all, it's funny listening to what happens when your neighbors start to notice things.

One of the things I mentioned in an earlier post was that I understood more now about a women's hormones and some of their emotions. Ever since I've started treatment for Leukemia, I have never been so up, down, left, right, middle, near or far away from what I would call a 'normal feeling.' And it's not because of the initial, 'oh crap, I have cancer, what am I going to do?' reaction either. Because we've pulled through that, and are weathering this storm head on. By the time we come back to port, our hull will be clean as a whistle! However, in the meantime, I have the chemo once a week, and all the daily drugs to go along with it. And they've made me freakin' crazy emotional. If I see something sad on TV, I'll cry. I can't even open more than two sympathy cards in a row without getting weepy. It's awful! I get weepy talking to friends and family on the phone...oh man...it's gotta stop! It's like I have no barrier to shield myself from those things any more. They just happen without warning. So, if that's anything similar to what a woman feels during that time of the month or during menopause, I am so sorry! I will try to be more sensitive to that in the future...I swear!

Day 18: So far, so good

We just got home from Chicago about an hour ago, and so far, so good.  It was a little slow getting going - the pharmacy hadn't sent the chemo up so we waited a while for that, but then things ran like clockwork.  Jon's bone marrow biopsy went a lot better today too - the nurse practicioner that did it has done almost 600 over them in the last year, so she was a lot better at it than the last person.  Thank goodness.

I got to see the bone marrow itself - it was kind of cool actually.  Kind of like very very very red spaghetti.  We won't know the results for a few more days yet.

Jon is snoozing on the couch tonight, with the most consistent side effect he seems to get every week - severe chills, so I've got blankets piled on top of him and our dogs snuggling him.

Thank you everyone for all the well wishes and prayers.

Day 17: Checking on the Plan

Jonathon felt much better today - the most energy he's had in weeks - which fits with what the doctors told us would happen.  Five or six days after they administer the chemo, he'll start feeling better, and then they'll do the chemo again.  So tomorrow we go back to Chicago for the next round.

Monday's plan is to get the regular round of blood tests, the IV chemo, and then they'll do another bone marrow biopsy.  This biopsy is really important - it's the first check to see if the chemo is making a difference.  If it's working, we keep doing the plan we've been working on for another two weeks.  This whole first month is called induction therapy.  Goal #1, which is what induction therapy is for, is to get the leukemia into remission.  And 90% of the time, they can do that in the first month.

Once induction therapy gets Jonathon into remission, then we start consolidation therapy.  It's a different schedule of chemo treatments.  That goes on for roughly 6 months.  Then after that, it's maintenance chemotherapy for the remainder of the 3 years.  The other interesting thing is that for men, they have to do chemotherapy for 3 years, but for women they only have to do 2 years of chemo after induction.  Weird, huh?

So, hopefully tomorrow will confirm that the chemo is working, so that the next bone marrow biopsy (two weeks from Monday) shows that the cancer is in remission.  We probably won't find out for a few days after, of course.  *Crossing our fingers*