I HAD Leukemia

The Better than Death Approach

2012-01-18T19:02:00.000-05:00

This post is going to sound like a huge rant and it kind of is, but I'm going to add my saving disclaimer to it, the better than death approach, and then all will be right in the world. Trees will explode with leaves again, it'll stop snowing, and I'll pretend I'm on a lake somewhere on a Summer day with a fishing pole in my hand. Or, a camera. Either one.

So far, in the last year, my feet still burn and hurt from day to day. It has gotten slightly better, but not much. My eyes are completely tweaked. At 36, I've now had cataract surgery on both eyes. At a distance, I can see okay. Up close, not so much. So I've become one of those people who constantly says, 'Wait, let me grab my glasses.' I also developed Osteoporosis. My hair is drastically thinning. And now, I'm at HIGH risk for developing Diabetes. I start a new drug to combat that tonight. More drugs. Ugh. Here it comes. Wait for it. It's better than death.

Who do I have to thank for all this? Steroids, and all the other drugs. Which, I thought I'd go into while I'm here, to give you all some idea of the craziness involved with these medications. Below is an actual photo I took of all the drugs I'm now on. Once a day...every day. It's a shame these aren't colored more like Skittles.

The list is as follows:
-Prednisone. Evil. Helpful, yet sinister.
-Acyclovir. Anti-viral.
-Bactrim. Antibiotic.
-Prograf. Immune suppressant.
-Sacrolimus. Immune suppressant.
-Fosamax. Osteoporosis.
-Fenofibrate. Cholesterol/Triglycerides.
-Crestor. Cholesterol.
-Amlodipine. Blood pressure.
-Diflucan. Anti-fungal.
-Penicillin. Antibiotic.
-Metformin. Diabetes treatment.
-Ambien. Can't sleep without it because of the steroids.

Believe it or not, this list used to be longer! Since starting the Prograf again, I'm incredibly thirsty too. My drink is never far from my reach and I will mow you down if you come between me and it. Things could get ugly. But hey, it's better than death.

Fitness and Cancer

2011-11-22T13:43:00.004-05:00

By David Haas (Introductory Guest Blog Appearance)

It stands to reason that someone who has been recently diagnosed any kind of cancer including common cancers such as breast cancer and skin cancer and even rare cancers like mesothelioma wouldn't want to spend a lot of time exercising. The shock of having been diagnosed with an often fatal disease combined with the sickness, pain and fatigue associated with said disease can all but destroy any motivation that one would have for remaining or becoming physically fit. Physical fitness is important for everybody, even those who are suffering from cancer. Recent studies have found that while a regular exercise regimen is by no means a miracle mesothelioma treatment or a cure for any other kind of cancer, it has helped aid the recovery and improved the prognosis of many cancer patients.

Two of the most common and debilitating side effects of most traditional cancer treatments are fatigue and loss of muscle strength. Cancer treatments such as chemotherapy tend to make patients feel very fatigued, so naturally they do not want to spend a lot of time doing much of anything, let alone engage in any kind of exercise. The muscle weakness commonly experienced by cancer patients naturally results from this fatigue. As they are deprived of exercise, these patients also miss out on some of the benefits that come from being physically fit including improved sleep patterns, increased energy, decreased depression and a generally improved sense of wellbeing. In other words, exercise can help a cancer patient or cancer survivor get his or her life back.

One form of exercise that many experts suggest for cancer patients is lightweight training. It's already been established that many cancer treatments cause a weakness in the muscles, so a weight-training program has proven to be very beneficial for many patients undergoing chemotherapy or similar treatments. It is not recommended that anyone who is experiencing fatigue or muscle weakness attempt any rigorous weight training exercises, but there are plenty of light exercises that can be done that will still help to build lean muscle mass and improve the overall fitness of cancer survivors.

The American Cancer Society has become so convinced by the benefits of exercise for cancer patients that they have implemented moderate exercise programs for patients who have been newly diagnosed with cancer. These exercise programs can technically be considered palliative therapy, which means that while they will not cure or treat the cancer directly they will at least improve the symptoms of the disease or treatment.

The Sucknazone

2011-09-08T13:02:00.000-04:00

That's what I'm calling Prednisone for now. I keep forgetting that steroids are the gift that keeps giving. It's maddening how this one drug plays a crucial role in the healing process, as well as the inhibiting process. While it's staving off my GVHD, it's destroying a variety of other things. I was informed about a week ago that I'll be needing cataract surgery on my left eye, with my right eye soon to follow. My vision has been incredibly hazy lately and even blurry on some days. The details with that are still being worked out.

My blood pressure has been really high lately too, which my doctors have also attributed to the steroid dose. Based on what those readings were in the last week, I suspect I'll be on blood pressure medication soon.

My oncologist at the University of Chicago has decided to add another immune suppressant drug to the already extensive regimen. I'm going back on Prograf in the next week, in addition to Sacrolimus. Prograf we suspected, was largely responsible for my neuropathy problems in 2009 and part of 2010. But we're hoping that won't be the case this time around. If it prevents me from drawing or playing guitar again, that might be bad. So, by this time next week, I'll be on 3 different immune suppressants: Prednisone, Prograf and Sacrolimus. Now, where did I put that hand sanitizer?

As of right now, there's not really an end in sight to stopping the steroids. But I'll keep hoping. I am getting tired of hearing the response 'It's from the steroids.' Ugh. These drugs are just reeking havoc on my system. First, my eyesight went, and keeps changing. Then I developed Osteoporosis. My cholesterol is whacked and now I've got high blood pressure. Awesome. I'm actually in better spirits than I'm appearing...really. They should just list the side effects that come with steroids as 'Please see your nearest Encyclopedia...then pitch a tent.' Or, see the Jedi Archives and then go into cryo-sleep. Seriously. Why is the grass green? Steroids. Where did that lightning come from? Steroids. I'm telling you...this is what killed the dinosaurs.

Stay out of the Sucknazone. Trust me.

Stoney Vaccinations

2011-07-08T18:04:00.001-04:00

You just never know sometimes what your doctors have in store for you when you go to their office for an appointment. The nurse comes out of the armory, calls your name, battle ax in hand...sound familiar? No, not really. I always get a kick out of my conversations with these people.

Nurse: "Jonathon?"
Me: "Yep."

I stand up and follow her back to the armory. Her ax still has blood on it, I swear. She was fighting dragons today. With Matthew McConaughey. London is gone right now. I can see the flames from my chopper.

Me: "How are you today?"
Nurse: "Oh, better than you!" (Not a good sign when they say that, I've discovered. Never.)

Me: "Uh-oh...why's that?"
Nurse: "Cause you're about to get 5 shots."

Oh goody. Bring on the pokage. 5 shots. Measles, Mumps, Polio, something, and something. My mind trailed off after Polio. I was focused on the fact that my arms would soon like a buckshot target.

By the time I get home from there, I'm actually a little stoned. I think the drugs were taking effect, but thankfully not whilst I was driving. I do remember texting my wife something about 'being a pepper too.' Who knows. I can't be held responsible for what may or may not have occurred while I was under the influence of too many vaccinations. My phone will remember. Someday, I just might have to put something together that encompasses everything I've said unaware while undergoing treatment with these drugs.
Drugs are devilry I tell you. Just devilry. But they make for great entertainment.

Thank You Steroids and Have a Nice Day...

2011-06-03T13:31:00.000-04:00

The ramifications from being treated after having cancer just keep getting more complicated. This week, a number of things happened, leading up to more drug changes. For those who don't know or are just tuning in, I'm still battling issues with GVHD. (Graft vs Host Disease.) My skin is still very tight, and discolored. The muscles throughout my body still lack normal flexibility, and my breathing is far from normal. All these symptoms are being kept at bay by the use of Prednisone. (Steroid.) Prolonged use of this drug has proven the reason why long term use is bad. In addition to finding out I have a cataract on one of my eyes, I found out this week that I have Osteoporosis, as a result of long term use of the steroid. I'll get back to that in a minute.

I met with my Oncologist in Chicago this past week and as a group, we decided that Gleevec might have been helping a little with my GVHD symptoms, but it's definitely not helping enough. We decided to stop the Gleevec and try a new drug called Sirolimus. Apparently it's a pill similar to Prograf, in that it's a immune suppressive drug that may help 'calm down' my problems with GVHD. Trying out Sirolimus is for right now, a better solution for the short term to see if it makes a big enough difference in the next few months. If this doesn't work, or help enough, we'll most likely have to resort to a program called ECP. I am to remain on the steroid dose for now.

ECP is a treatment of the blood where they basically draw a certain amount of blood, filter out the bad cells in it and then transfuse the blood back into my body. This process would have to be done in Chicago, 2-3 times per week at 6 hours per session. To put it lightly, I'm not interested in doing in that, and will consider it a last resort. Especially, since I haven't heard of anyone who has had success with doing that.

I'll be starting a new drug soon for the Osteoporosis, and I'll find out what that drug is today with my local doctor. The goal with that is to prevent it from getting worse than it already is.

I'm frustrated with all this. And I'll tell you why. It just seems like we're throwing ideas around in a hat, tossing them up in the air and picking out one that looks good. This is not the Goblet of Fire. The very drugs I keep using for treatment, are the same ones that are making matters worse. I guess I'm having trouble seeing the 'greater good' through all this. I can honestly say I've never heard of anyone dying from GVHD. It's just a big annoyance. I have to believe that things will normalize in time. The goal is get off all the drugs, not add more that are just going to cause more problems. But I'm going to do what I'll always do and listen to my doctors, even when I don't like it.

More coming soon.

Gleevec is Helping

2011-03-30T18:01:00.000-04:00

Little victories are triumphant victories for cancer patients. War-like victories. When you've looked the evilest devil in the eye and you walk away still standing saying, next, it's going to bring anyone joy.

You know you're getting better when your doctor comes into the room and the first thing he starts talking about is college basketball, and how that relates to me because of where I work. I'm not a basketball fan as a general rule, but when the focus of my health is now in the backdrop of our business together, that rocks. I'm still the subject of his primary focus of course, but it makes me feel good when he sort of means, we have some issues to go over, but let's talk about this first, as in, how 'bout them Irish. I like that. Even if I'm not that interested. It means things are good. Hell, things are goodfull. Is that a word? I'll make it one. I'm contacting dictionary.com right now.

Since the start of my use of the drug Gleevec, we've come to the conclusion that it is in fact helping with my GVHD. My skin is loosening, I'm a little more flexible, my eyes have brightened, and my skin is not nearly as dry. It's been 2 months since I started it and it's been a very slow progression, but the evidence is there, without any hampering side-effects. In addition, we have hopes that I can start tapering off from the steroid this Summer. We don't want to be too presumptuous on that yet, but it's a possibility.

All is right in Jonathon's world today.

Virtual Meetings

2011-02-28T14:27:00.006-05:00

In the last few years, I've met some pretty amazing people, just from having a few blogs and being a part of the fast-growing social monster known as Facebook. I like to write. A lot. It's even got me in trouble a few times. So, when I got sick, writing was one of the few things I could still do. I could hide behind my laptop screen, write what I wanted, with the intention of maybe helping someone else in the same situation. It was a way for me to present my experiences from a patient's point of view, rather than what people would search for on WebMD, Google, or what ever outlet they chose. It was also a broader way to inform friends and family about day to day progressions. Or setbacks even. It was a common ground. A social, virtual water cooler.

So, who have I met? People from all over the world and in our country. Some of whom, I have not yet met in person, but are planning to in one way or another. I've met some great people more locally too, like Damon and his family in Chicago. They came to see me several times, in the hospital and here. And we've been with them through a few football games. I talked with someone recently from New Jersey through email just the other day. I met Bob at Holy Cross College while in the thick of treatment. There's also fellow blogger Daniel and his family, who live in Romania. Great people. I've also talked with Alison and Kathleen who are both from South Africa. And I'm not even listing them all! It's amazing what hiding behind your computer sometimes will do for your virtual interactions when you're faced with a common enemy. What do they say, the enemy of my enemy is my friend?

With that said, I couldn't have predicted who I would wind up meeting and what I would end up learning as a result of this blog and Facebook. Still mystifies me sometimes. In a good way.

Gleevec Part II

2011-01-15T00:53:00.001-05:00

I win.

As it turns out, the medical team at the University of Chicago was able to appeal my insurance's original decision to deny coverage for Gleevec. Scroll down to see the backstory in my original post about this. After convincing them that this could possibly have some success in treating GVHD, they decided to give us the go-ahead, which is great news because this drug is very expensive and not even available at certain pharmacies. It has to be mail ordered, which I'm not thrilled about...but we'll give it a fair shake. Something about being able to talk to a pharmacist when you want to know more about side effects seems a lot more personal than a getting a bag full of drugs in a mailbox. You need SS numbers, addresses, ID numbers, and the names of your first born children to hand over before anyone will prescribe you any drug....but we're okay with it sitting in a mailbox for hours till I get it? Mm-k. And they say I'm goofy.

In any case, Gleevec has been approved, and we're waiting for it to arrive. All is right in our world today, thanks to the efforts of UCH. Great job to Dr. Artz, Linda and Lisa! You guys rock.

My wife is still doing the Snoopy Happy Dance.

Gleevec

2011-01-11T21:29:00.001-05:00

In the last year, researchers and trial participants of treatment for Leukemia have discovered something that might help in battling GVHD over time. (Graft vs Host Disease). In the event of a person having a bone marrow transplant, like myself, their new stem cells can often times wage war against what's left of your old immune system, causing all sorts of problems. To this day, it's why I remain on Prednisone (steroid) to suppress those problems. (i.e., skin tightness, energy levels, flexibility, eye problems, etc).

During treatment for Leukemia, a person having the Philadelphia chromosome would have a drug called Gleevec added to their regimen. I did not have the chromosome, so I was never prescribed the drug. But in their research, trials have found that in addition to helping treat Leukemia, the drug also helps combat GVHD. As a result, my doctors want me try it and see how things go. In the last few weeks, also under the direction of my doctors, I have stopped taking Prograf. (Another immune suppressing drug.)

The downside is that the drug is incredibly expensive. (Around $4000USD for a 3 month supply). We're battling it out with our insurance now to get it approved, but so far it hasn't been a fruitful effort. They don't want to cover it because I don't have the chromosome and it's not considered a standard treatment for GVHD.

More to come as we find out more.

Thanksforgiving Life

2010-11-23T14:42:00.002-05:00

At time of year when families get together for turkey, potatoes and those awful cranberries, we often need to be reminded of gifts we have in our lives. When I say gifts, I don't mean bags with streamers hanging off of them; I don't mean glitter-ridden, wrapped boxes either. And I certainly don't mean the score you brought home last year from Macy's Black Friday sale.

I mean life. The life(s) that are in your life. Not lives. Life(s). One of the many definitions in our dictionary under the word life, defines it as 'the animate existence or period of animate existence of an individual.'  Well, we all have people who exist in our lives. That's not a new development. What we have few of, is people that bring life to our lives; People that bring light to areas of darkness; People who won't walk the path for you, but show you the clearing through the forest to get there; And people that pick you up when you've fallen down. Each of us have an amount of people in our lives that do that for us. It doesn't matter how many you have, only that you do.

A friend of mine once said, 'It doesn't matter how much wealth you have or had; but rather how many people showed up at your funeral. That says what kind of a person you were.' I don't truly believe in this statement, but it does hold some validity. Are you more likely to be remembered as an asshole? Or, are you more likely to be remembered as the person who'd do anything for anyone, regardless of personal benefit? You choose. Because at the end of the day, it's your actions that people judge you from, and your own conscience that you have to go to bed with.

I present a challenge to my readers. I wouldn't normally do this, but I'm in the spirit of Thanksgiving, so deal with it. I challenge you to do something uncharacteristically nice for someone. It can be a random someone, friend, wife, husband, family, etc. No monetary gifts. Just a simple act of kindness. Why? Because you DON'T have to; Because it's NOT required; Because everyone needs a little life brought into their life once in a while. Gives them hope. Reason. Even humility.   Once you've completed the challenge, you must post what you did here on the blog, or on my Facebook post about it.

When you're sitting around at the family tables passing around that nasty cranberry sauce, think about that. Think about those that have brought life to your life, and wonder to yourself about how to pay them back for it.

Have a great Thanksgiving.

~Jonathon

Jedi Bronchitis

2010-10-22T12:12:00.000-04:00

Anakin Skywalker had it rough. Poor kid had to leave his mother at a young age in hopes of becoming the greatest Jedi the universe had ever seen. Many years later, he dukes it out with Kenobi, loses the battle, and gets thrown into a black suit and mask to survive. Thus, transforming him into the seemingly evil, Darth Vader. Without the mask and suit, Vader would die. Having said that, everyone recognizes the raspy inhale and exhale heard through his mask in the films. This is similar to how I've been breathing lately.

Last week, I came down with bronchitis. Or a mild form of it anyway. Not good for someone who's already had pneumonia twice. As a result, my doctors recommended that I use a nebulizer combined with albuterol. The nebulizer, to me is a fancy word for 'tiny air compressor' with less syllables. Albuterol is a drug that's used in rescue inhalers for people with asthma and things like that. Once a day, I add the albuterol liquid to this mask adapter that's connected through the nebulizer, breathe normally, and BAM! Insta-Vader. Only without the kick-ass lightsaber.

The long short of it is basically that my lungs still have some scar tissue in or around my breathing vessels from my previous bouts with pneumonia. When a person gets bronchitis, mucus starts to build up around those tubes and starts to limit the amount oxygen going through. As a result, the oxygen levels in your bloodstream drop, you experience extreme shortness of breath, lots of nasty coughing and are really fatigued. It actually feels a lot like pneumonia, without the fevers. This is where the albuterol comes in. Supposedly it'll assist in drying the mucus in my lungs. I will most likely have to do this breathing treatment for a month or two, perhaps longer.

In the meantime, while I find my lack of breath disturbing, I am still working. But beneath the lightsaber hum and low force rumbles, television has become my new best friend...again.

Octobupdate

2010-10-05T12:27:00.000-04:00

Last month marked one year since I have returned to work. Hard to believe it's been that long. Despite the ups and downs we've had, I don't think I would trade it for being sickly off again. No sir-ee.

I met with Dr. Artz at UCH this past week. He thought I was doing well. I also had pulmonary and bone density exams. My pulmonary exam came back a little mixed. They told me that my ability to exhale and hold that action has been in steady decline over the last few tests. The amount of air my lungs are taking in is fine however. My bone density was slightly below normal, but that was expected being that I'm still taking Prednisone. (Steroid.) So I have to go back next week for a CT Scan and pulmonary consultation just as a precaution.

I go back to my local doctor for more vaccinations on Thursday of this week with my flu shot being on the list as well. Oh goody...more pokage.

Now that most of my summer projects have come to a close, I have been drawing more lately and building models. People have asked me a lot lately 'when do you have time to do that?' The answer is simple: I make time. Because I think I have to. For a while, I think I was trying to move a little too fast too quickly. I found that I was wearing myself out to the point of shear exhaustion just trying to catch up on things. Drawing and building models helps me keep busy, but slows me down to where my body can relax and recuperate. Here's an F14 Tomcat I recently built -

Linda - If you're still reading this blog, I have a surprise coming for you.

The Battle Continues

2010-08-06T09:09:00.002-04:00

One thing's for sure - I could never be an addict, shooting up with needles all the time. After going through all this treatment, there's no way in hell I could self-puncture myself with even more drugs. Nuh-uh. No sir-ee bob.

Yesterday I had to receive all my vaccines, like Polio, Hepatitis B, Tetanus and one other one I can't remember the name of. As I sat in the exam room playing Hold'em on my iPhone, the nurse comes walking in with a stack of needles, eerily reminding me of the doses of meds I'd receive in the hospital. I tried to recall what it was like to receive these when I was a child. But no memories surfaced. I knew the Tetanus shot would make my arm sore, as I have had that one a few times over the years just from being a clumsy ass. So I politely asked,

"What are these going to make me feel like afterwards?"

Nurse: "Well, it's hard to tell really. Everyone reacts differently. I once had a patient pass out."

Me: "Whoa, really?"

Nurse: "Oh yeah! I left her for a minute after administering them, came back in the room and she was lying face first on the floor."

At this point, I'm thinking 'oh, that's just freakin' great.' I start to go over all the medications I'm on in my head, wondering if any of them could cause a reaction like that. She then starts gloving up and un-capping the needles. My attention is quickly diverted to her hands.

Nurse: "We call it the Vaso-vagal. Happens all the time."

Seriously? That's going in my blog, I start thinking.

I must spread awareness. Shoot me in the face. Vaso-vagal? I don't know what's scarier...people passing out from vaccinations, or that it happens so damn often, there's an inter-office term for it. She then lifts up my sleeve and,

**poke**
**poke**

Other arm -

**poke**

Nurse: "But you'll be fine, don't worry."

**poke**

Me: "Yeah, next time - lead with that."

She just laughed. I didn't pass out. But I elected to stay for a few minutes afterwards just in case. Needles to say, my arms feel like an old set of 2x4's. All creaky and aged. Small price to pay I guess, considering.

Vaso-vagal. Hmph.

Remission...Again

2010-05-18T07:51:00.001-04:00

I'm sure by now the news has spread throughout my collective peers that I received great news a few weeks back. My last bone marrow biopsy showed no signs of Leukemia. This was wonderful news and we were very happy to hear it from the University of Chicago.

Tomorrow is the one year anniversary of my bone marrow transplant. To me, it's not important because a year has passed, but more that my doctors can now release the contact information on my stem cell donor. I will be contacting this person to thank them for saving my life, for sure.

Life is stupid busy right now...but good to say the least.

Goddamn Cancer

2010-05-04T08:30:00.001-04:00

Yes, I said it. Goddamn cancer. This last year has just felt like one bad episode of House. If I lose one more person to this dreadful disease, I just might snap.

Friends of our family have been struggling with this disease as well. Our friends Alan and Angie live in Niles and we see them often. Angie has a sister whose husband Johnny was diagnosed with colon cancer last year, shortly after my diagnosis of Leukemia. He since gone through a fierce chemo regimen and surgery. It's also metastasized in his liver. This is from his Pam, his wife's blog today:

http://thefightingtoad.blogspot.com/

News from the CT is bad. Liver is worsening, despite both regimens of chemo. Cancer has traveled outside the liver to the mediastinal lymph nodes (lower chest) and in the upper abdomen.

Dr. Ansari is giving Johnny his regular chemo regimen today, and adding Avastin. He will evaluate our options and give us an updated plan in two weeks. We may be looking at experimental options next. Radiation isn't an option. Additional surgery isn't an option.

My heart goes out to Johnny and his family. I wanted to post this here to raise some awareness about him. So, if there's a God you pray to or a savior you turn to in times of turmoil, now would be the time to keep Johnny and his family there in hopes of a good recovery. There's always hope.

Johnny, Pam, Alan and Angie -

If you need anything, please don't hesitate to call. You know we'd be there.

~Jonathon

Drawing, Weight and Good Living

2010-04-12T10:32:00.000-04:00

It's been a while since I've posted, so I thought I'd give out an update. Overall, I'm feeling pretty damn good. Lately, I've been doing a lot of work outside AND drawing! The neuropathy in my hands has mostly diminished, so a friend of mine and I are working on a project together. Last year really took its toll on my hands and I had a hard time writing well. Drawing was simply out of the question. But now, I'm getting back what was once lost. For updates on that, go to www.jonathonrose.com.

I'm still on Prednisone (steroid) and probably will be for nearly a year. It does wonders for my appetite. I've also began to regain my weight. My target weight is about 195 or maybe 200lbs. I'm up to about 185 right now. It's hard to believe at one point last year I was down in the 140 area. Crazy.

For right now, all is going well on the Rose front.

I apologize for the lack of creativity and updates in my writing lately. It's just been hard to find the time with it being so nice out now!

Mild Case of GVHD

2010-03-11T08:21:00.000-05:00

My doctor in Chicago (Dr. Artz) has decided I now have a mild case of GVHD. (Graft vs. Host Disease.) It's a condition where my new stem cells are attacking what's left of my old immune system. As a result, you get fevers, extreme dry mouth, tightness in my skin and a whole slew of other things. It's very possible that I've had GVHD since last year, but because I was on steroids for other things, it helped mask the symptoms of GVHD. As a result, I have to remain on a high dose of Prednisone for about 9 months. Once again, my appetite has become equal to Megatron's hunger for domination and destruction.

I'm still battling the effects from my last cold. I still have a lingering cough and some mild congestion as well.

In other news...

My personal website has undergone a humongous update. There's new photos and drawings splattered all over the site. So, if you're interested in seeing that, go on over to www.jonathonrose.com.

Down

2010-03-01T13:54:00.000-05:00

They told me the first time I got sick with the flu or even a cold that it would hit me hard, and be tough to get over. Well, they were right. For the past week, I've been down with the flu or a bad cold. It started with fevers for a few days, and then the other symptoms set in. (i.e., head congestion, coughing, watery eyes, low energy levels.)

Used to be, when I would get sick, a cold would have me down for 2 days tops. The flu, maybe 4 or 5 days. But nowadays, ugh, I'm going on 8 days of feeling like I was hit by a school bus.

I was off work most of last week, but managed to make a comeback today. Between the Tamiflu and antibiotics I'm on, I think it's helping. Certainly not hurting anyway.

Hopefully, my immune system is figuring out how to fight. This is how my new stem cells get broke in, right?

Half Empty Tea Cups

2010-02-10T21:40:00.001-05:00

We seem to be riding the bad news roller coaster lately, and quite frankly, I want this ride to stop. No, it's just not fun anymore. I'd rather be on the tea-cup ride at Disney, hearing 'It's a Small World Afterall' over and over again. Yes, it's getting that bad.

Earlier this year, we discovered a crack from floor to ceiling in one of our foundation walls in the basement. We had water seeping in along the crack, creating pools of water on the floor. So, that's getting fixed.

A friend of mine's best friend died last week after a dreadful fall from a ladder. I played poker with him a few times, but my buddy knew him since they were kids.

In the last month, I've put two distinct dents in my driver's truck door that I almost had no control over. Anyone who knows me will understand my frustration about that. For those that don't - I'm very anal when it comes to my vehicles.

**sigh**

But I've been feeling good and am just trying to put last year behind me. Little by little, it seems to get farther away. My feet are still bothering me though. Mostly towards the end of the work week. It's like being on them more frequently somehow intensifies the numbness/soreness feeling. But there are times when I feel like as long as I keep moving, they're fine. It's when I sit down for a while, and then try to get up, it's hard to walk for the first few steps. I prefer to keep moving, like the tea-cup ride - without the goofy music.

Jonathon out.

It's Been Over a Year Now...

2010-01-31T21:02:00.001-05:00

Ah, yes. The Grammy's still suck.

Oh.

Woops. Sorry. Just thinking out loud there for a second. Back to business. I think I've finally returned to my normal self for a little while. My balloon body has since disappeared thanks to the diuretic. On Friday, I weighed in at the doctor's office at about 182 pounds. A week earlier, I was pushing 200. Scary that your body can carry around that much additional water. I can fit into all my shoes and khaki's again! Thought I was going to show up in sweats to work at one point. Which, wouldn't have been an awful, at least for my comfort.

For the longest time, the appearance of my hands have been affected by the radiation. They have this red hue to them all the time. It looks sort of like your hands were outside in the cold for too long. The redness is finally starting to fade, and my skin color is slowly returning to normal.

It's been just a little over a year since I was first diagnosed. Hard to believe that much time has gone by already.

What? Now we have dancing washing machines on stage? Seriously. The Grammy's have lost it. I think I'd actually rather be watching the Oscars.

More later...

Back to the Grind

2010-01-18T14:45:00.003-05:00

Aside from getting pneumonia, which I'm still recovering from, I've managed to put on about 7-10 more pounds and I've went up one full waist size. The lower portion of my body is extremely swollen. I'm not sure why, but I'm guessing it's due to the antibiotics and fluids they gave me while I was in the hospital. My waist, legs, knees, ankles and feet are all very swollen. Although I'm back to work today, it's very difficult to walk around. My legs feel very stretched and ballooned. They did prescribe me a diuretic which I have to pick up tonight. So, hopefully that will help.

Sometimes it can be really hard to stay positive after all this. I keep thinking, 'jeez - what's next?' But I have to remember that overall I'm doing pretty good. Until the last few weeks, I hadn't gotten sick at all. Which is pretty good for someone who's had a bone marrow transplant and his immune system erased. It just seems like when I really start to bounce back, something happens and I get knocked back again. One step forward, two steps back. But I can't look at it like that. I came home a weeks earlier than I was supposed to after my transplant. I haven't gotten a cold or the flu. I returned to work 2 months sooner than I was scheduled to. But I got an allergic reaction-related pneumonia over the holidays. Big deal. What else you got to throw at me?

Bring it.

Getting Closer...

2010-01-12T14:52:00.002-05:00

My doctors still believe I have Eosinophilic Pheunomonia. So far, my blood cultures and other tests have all came back negative for infection, be it viral, fungal or bacterial. That also means I'm not contagious, which is good.

I was able to walk the hospital halls yesterday without oxygen. My breathing is still far from normal, but it's getting better every day. My doctors tell me if I remain on this track and continue to do well, they're going to send me home tomorrow! Yes! Finally!

I still be taking a pretty healthy dose of Prednisone, but that's okay. It does wonders for my appetite anyway. Speaking of that, my weight is still slowly rising too. I weighed in at 183 this morning. I'm still about 10 pounds lighter than I was before all this started, but I'm definitely on the right track for gaining it back. (Probably thanks to Taco Bell.) Ha-ha.

Daniel - my camera is unfortunately stuck at home, so I haven't had the chance to take more pictures with it. My wife brought a lot with her for me at the hospital. Everything but the kitchen sink actually. But when I return home, I'll get back to that! Promise.

Eos-something Pnuemonia

2010-01-11T15:09:00.002-05:00

Well, after nearly 5 days of deliberation, the doctors here, all 187 of them, decided I have something called Eosinophilic Pneumonia. Huh? Yeah, I still can't pronounce it either. Now, what does that mean? Here it is straight from Wiki:

Eosinophilic pneumonia (EP) is a disease in which a certain type of white blood cell called an eosinophil accumulates in the lung. These cells cause disruption of the normal air spaces (alveoli) where oxygen is extracted from the atmosphere. Several different kinds of eosinophilic pneumonia exist and can occur in any age group. The most common symptoms include cough, fever, difficulty breathing, and sweating at night. EP is diagnosed by a combination of characteristic symptoms, findings on a physical examination by a health provider, and the results of blood tests and x-rays. Prognosis is excellent once most EP is recognized and treatment with corticosteroids is begun.

So, in other words, they're putting me back on Prednisone. I had just finished that drug in mid December and now I'll be back on it again. I don't know what it is but it seems like that is this hospital's answer to everything problematic with me.

"He's got a rash?"
"Put him on Prednisone!"

"He's got pneumonia?"
"Put him on Prednisone!"

"What? He broke his foot!?"
"Put him on Prednisone...seriously."

He-heh. Doctors.

I feel okay otherwise. I'm still very short of breath when I get up to do something. But as of today it's not taking me as long to re-catch my breath, so that's good. I'm still on oxygen for right now, but the plan today is to get me off of my IV meds/fluids and starting taking my steroids orally. Which, is a good sign that I could be returning home in the next day or so. I hope so....because I don't know how much longer I can handle being in the hospital. I think I've done my bit and part for hosptial stays for 3 people in the last year.

More later folks.

No updates, no news

2010-01-09T18:43:00.000-05:00

Today has been very slow. No new tests for Jonathon, and no results from any of the tests the last few days. So... we're just in wait and see. Again - thank you to everyone sending prayers. We are so grateful to have so many caring wonderful people in our lives.

Back to Chicago for complications

2010-01-08T19:22:00.000-05:00

Well, they promised us that Jonathon would end up back in the hospital at some point after the transplant, and despite going over 6 months with no issues, here we are. Some kind of infection is trying to take over Jonathon's lungs, so we're in Chicago to get things fixed since a round of antibiotics at home didn't help, and things just kept getting worse. Today he got a bronchoscopy so that they could get a sample of whatever it is growing in his lungs, and then hopefully they'll be able to grow whatever it is and target it with the right drugs. They have him on oxygen since those levels were kind of low and an IV antibiotic. There have been a number of CT scans and xrays and such too. We've seen a pulmonologist and an infectious disease specialist. So far, he's feels pretty much ok other than being super fatigued and coughing occasionally.

Thank you everyone for the prayers and positive thoughts. We know they helped before, so we're sure they'll help now too. We don't know how long Jon might be here, and he's hoping to get back home to South Bend real soon. We'll keep everyone posted.

Age, Christmas & Cameras

2009-12-22T09:28:00.006-05:00

Hard to believe nearly a year has gone by since I started having health problems. Nevertheless, we're ready to close the books on this year and enter 2010 with new beginnings. Though, I'm a little more humble (I think), a little more gray in the hair, we're progressing as though nothing happened. Speaking of which...I went to Wings Etc. yesterday with a few friends at lunch when the topic of age came up. Our waitress brings our drinks and asks,

"How old are you?"
"How old do you think I am?" I said.

I always get a kick out of watching people deliberate on their answer while they study my face.

She looks at me for a moment and says,

"39?"

I'm going to assume my eyebrows raised up Spock-style. I didn't say anything yet, but I'm pretty sure I was half-smiling. Al is snickering to himself and Jeff is bubbling laughter into his water. She then tries to correct herself and says,

"43?"

I'm like, then I said,

"Well, I'm actually 34, just turned."

"Omg, I feel terrible..."

So, I think my goat-tee's days might be numbered in effort to make myself look a little younger I guess. I don't know...we'll see. 43? Really??

My wife and I will be traveling to Green Bay for Christmas. We'll be there for 5-6 days. I'm looking forward to being off work and spending some time with family.

On Sunday, my family pitched in for my birthday and Christmas and bought me a new camera. It's a Nikon D5000. I am like a little kid with this thing. It's freakin' awesome. It takes astounding pictures and video. It has a lot of bells and whistles that I haven't gotten to know yet, but so far it's been really easy to use. Here's a few shots I took just playing around with the focus...

I am by no means a photographer. But I love taking pictures. Sometimes they turn out good, and sometimes they don't. I hope to be posting more pictures on my Deviant site and on my personal site soon.

'Till then, I wish everyone a safe, Merry Christmas and a fantastic new year.

Remission...Still!!

2009-11-30T12:55:00.006-05:00

Late Sunday afternoon, I received a call from my doctor in Chicago, stating that my 6 month bone marrow biopsy came back free and clear of any cancer cells. This was great news. Before the biopsy they drew blood to run labs on my counts. I found out that my counts were holding steady and really couldn't be better.

Hemoglobin - 14.0
White Blood Count - 8.7
Platelets - 167

So I knew from those counts that everything should be fine. But it was a big relief to hear it from the doctor himself.

Thanksgiving went well and was fairly festive. I surprised my wife by secretly flying her sister in for the holiday. That was a tough one to keep under wraps. Here are some pictures from the weekend...Katie and Kelly are so photo-genic, it makes me sick!

Katie and I.

Katie and her sister Kelly

Katie and Kelly, the white coated duo

From left: My sister Jen, myself, Aunt Judy, Aunt Sharon, My Dad, and Uncle Frank

Happy Thanksgiving

2009-11-24T14:14:00.004-05:00

I have a lot to be thankful for this year. I deeply appreciate all my friends and family that stepped up to get me through this year. It hasn't been easy on anyone. You know who you are.

I would also like to thank all the people involved with the bone marrow drive earlier this year. That was a wonderful thing to do. I can't seem to say enough about all the good things that came into our lives as a result of Leukemia. I've heard people say before that they're thankful for the disease because it changed their outlook on life and made them better people. It taught them to cherish small moments more, and make the best of even the worst situations.

Getting sick and being thrown to the floor like that will teach you 2 things:

1) How strong you are

2) Who cares about you the most and who is willing to step up to help

I would need pages and pages of text to name all the people who came together to make a difference. I'll never be thankful for getting Leukemia. It destroyed my life for nearly a year. But I'll always be thankful for what came as a result of it. I find serenity in that fact. I find peace there. Because there is what I'm thankful for.

Happy Thanksgiving to everyone.

~Jonathon

6 Month Bone Marrow

2009-11-18T13:18:00.002-05:00

Hard to believe it's been 6 months since my bone marrow transplant. Yesterday, my wife and I ventured to Chicago once again to have a few tests done and a bone marrow biopsy. I'm still waiting to hear the results, but hopefully I'll have them this week.

I have returned to work full-time and that's going much better. I'm not nearly as tired as I used to be. And I'm able to do things when I get home around the house. It feels very good to be resuming some sort of normalcy again. My strength and stamina are still returning as well.

This past Sunday I stopped taking Prograf. This was the immune suppressing drug that I feel was responsible for the neuropathy in my feet and hands. Since I've stopped taking it, I have noticed a dramatic improvement in the overall feeling in my extremities. They gradually weeded me off of the drug over a two week period. But in the last month, my guitar playing has gotten much better and I can write almost normal again.

For those of you that may or may not have noticed, I had a new visitor who commented in one of my recent posts. His name is Daniel and he's from Romania. He was recently diagnosed with ALL and his blog can be found here.
This link is the translated link from Google, so hopefully it works. You are in our thoughts and we wish you well. Let me know if you have any concerns or questions. I'd be happy to help.

October Update

2009-10-22T11:59:00.002-04:00

Went to Chicago twice this week. Monday for a thorough eye exam that literally was borderline painful. They dialated my eyes which wasn't all that bad. Then they put these strips in my eyes to measure the amount of tears my eyes are producing and that just sucked. I had to hold my eyes closed with these strips in there for a few minutes. Ugh. No fun. But after all that's been done to me this year, my eyes are still seeing 20/20. So I can't complain.

Tuesday I had a dermatologist appointment. In the last week or so, my rash has flared back up on my legs. So, they increased my Prednisone dosage a little.

I also started back to work full-time this week as well. It feels good, although my body is not quite used to it yet.

I know the posting here has been a little slow lately and it will probably continue that way. There's just not much new to report. However, I am back posting regularly on my personal site - www.jonathonrose.com. Look for new movie reviews as well.

The Stairs That Saved My Life

2009-09-28T09:07:00.003-04:00

It was a cold December afternoon in 2008, when I headed out for a smoke behind our building at work. I slipped on the icey first step down and came crashing down on my left side, breaking one of my ribs. This incident, though it seemed trivial at the time, led to the ultimate discovery of my Leukemia. Had I not fallen, I don't know how long it would've taken for me to realize something was wrong inside my body. I've always been a bit clumsy. Most of the time, that fact has resulted in things getting broken, shattered or destroyed. But in this case, my clumsiness saved my life.

Back to Work - Life is Good

2009-09-17T14:25:00.004-04:00

Last week I came back to work part time for the first time in nearly 9 months. I'm only working about 25 hours a week to start, but it feels good to insert another sense of normalcy into my life. Who would've thought I'd say that about returning to work, but it's been great. By the time I get home each day, I'm pretty wiped out mentally. So, I've remedied that by napping for an hour or two. (Doctor's orders.) I figure, if my doctor can find a way to save me from cancer, I'd better listen to him.

My strength is still returning very slowly. Even with my fingers at times, it can be hard to do simple things, like open a bottle of Dasani water. I don't know what it is with those bottles, but those caps really kick my ass. I can play guitar a little better than I used to, but I'm still deeply struggling with it. Writing is tough too. My penmanship is very raw still and unrefined. (I used to have pretty good hand writing.) But I still need a lot of practice in getting it back. I have trouble buttoning my sleeves at times too.

It's really remarkable to realize what everyone takes for granted every day. Like, buttoning a shirt, opening a water bottle, or just taking a shower. Having had Leukemia and been through the treatment for it, it's made me realize what's important in my life and what's not important. I'm finding that things that used to irritate me don't so much any more. And every moment that passes is a gift and should be remembered as such. (I guess that's why they call it the present, right? Ha!)

It's Official

2009-09-03T21:09:00.002-04:00

Yesterday we received good news from my doctor in Chicago...I'm still in remission, according to my last bone marrow biopsy. (This was the 100 day post-transplant biopsy.) My doctor told me that I'm not cured, but this is the best thing we could hope for considering what I've gone through. So, we were very happy to hear that news.

Also, I got the last bit of paperwork squared away with my insurance company and I'll be returning to work next Tuesday part-time to start. My doctor wants me to start slow, working 20 hours for the first week and then increasing by one hour every week after. Finally!

My ride is not over, but everything is looking up. I would like to take a moment and thank everyone for all the support we've gotten over the last 9 months. The response from friends and family has been unimaginably limitless. And my wife and I are very grateful for that. You know who you are, and we thank you from the bottom of our hearts.

Returning to Work

2009-08-27T10:55:00.002-04:00

Yesterday I had my 100 day post-transplant bone marrow biopsy at the University of Chicago. I'm really beginning to hate that procedure. The one I had a few months back hurt like hell, and so did this one. My lower hip area will be sore for weeks. My doctors expect the results to come back good and clear of cancer. I cannot help but be a little concerned about hearing the results though. Providing the results come back clear, Dr. Artz has released me to return to work part-time. So, as a result, I've started communications with our Human Resources department to get the paper trail started. Even if it's only part-time at first, I'm very excited to finally be returning to work.

I still have my rash and it hasn't seem to have gotten any better. I saw the Dermatologist yesterday as well, and they are still relatively at a loss. They did however give it a name: "granuloma annulare." In other words, it's a mysterious allergic skin rash that usually clears up within 3 years. Nice. Meanwhile, the lesion areas are starting to peel and it itches like crazy. They prescribed me an ointment for it and I'm still taking Prednisone, but it still hasn't gotten better. But, in the grand scheme of things, I could be doing much worse.

Good News

2009-08-12T20:33:00.003-04:00

This Wednesday's University of Chicago visit came with good news: a discussion on when I could possibly return to work. My doctor told me that typically with transplant patients, they'd rather wait at least 3 months before evaluating whether or not a person could return to work, because of Graft vs Host disease, drug reactions, or other immune system issues. In two weeks, I have another bone marrow biopsy scheduled. If that biopsy comes back good, and I'm not showing any other complications, I will be released to go back to work part-time. I'm excited!

I'm still battling a bad rash on my arms and legs. They took another skin biopsy today in hopes of determining the origin. All they can tell me so far is that it's an allergic reaction to 'something.' But the consistency of my rash has changed in the last week. It actually looks more like Ringworm. But they did test for that already, and that showed up negative.

Every time we've left the parking garage in Chicago, I've seen this Aston Martin parked in the same spot. I've been meaning to take a picture of the car for a while, and I finally did today. Just thought I'd share. She's beautiful.

Back to the Races

2009-08-04T15:50:00.006-04:00

This past weekend I went up to Martin Michigan with my Dad to see good 'ole drag racing for the first time this year. He pushed me around all day in a wheelchair so I could see the sights and feel the noise. I thank him profusely for that. While we were there I caught up with a buddy 'o mine Jay, who actually works on a pit crew with Top Fuel Dragstser driver, Bruce Litton. Jay introduced my Dad and I to Bruce and his crew and we got to see the car up close and personal. Bruce and all of his crew were very humble and tremendously nice. Bruce even sat down at one point and said a prayer with me. Imagine that. The number one qualifier in the IHRA division sat down with me and prayed. I was floored. I didn't get any pictures with the crew, but I did get a few of the car.

This beast of of an engine puts out 8500 horsepower at its peak. 8500! I can't even imagine driving that. We learned a lot of about the technology that goes into these cars. They also use roughly 15 gallons of nitro-methane per pass, including the burnout. Unbelievable. But we had a great time with those guys and I really am thankful for them taking the time out of their busy schedules to talk to us.

On the homefront, things haven't changed much really. My stamina is coming back day by day. I don't get as winded as I used to doing smaller things around the house. That's one improvement I've noticed. My foot pain is still my biggest complaint by far. Last week, my doctors switched me over to a drug called Lyrica, in hopes of some relief. It has helped some, but it makes me very sleepy. However, I'm back on Predisone for my rash so that helps combat the sleepy urges.

Jonathon Returns...

2009-07-21T13:24:00.003-04:00

I have no one to blame but myself for my mysterious lack of posts. I apologize to all my readers for that. In my small defense, sometimes there's not a lot of new information for me to post. And I don't want to make empty-hearted posts that just say 'yep, doing fine - see ya next time.' So I won't. But this isn't one of those posts so let's get on with it.

I'm beginning to suffer greatly from cabin fever. I know you're thinking, 'just now?' Yes...just now. There's only so many movies you can watch...only so many TV shows you can get caught up on...and the kitchen counters can only be wiped off so many times. I guess I'll really get worried if I get to be on a first-name basis with the mail lady.

My doctors think I'm doing fine. I won't say great, but fine is okay. Everyone kinda believes I should be progressing a little faster. I've been trying to walk down the street every day and I'm lifting weights to help with my upper body strength. My stamina is returning very slowly, like .02% each day. At least that's what it feels like. My biggest complaint right now is my foot pain. One of the drugs I'm on causes a burning sensation in my extremities. It's affecting my feet the worst. Most of the time they feel like they're on fire. Over the past few days, I've also developed a small rash on my arms and legs. It itches like crazy.

Last week, my wife and I were interviewed by NDWorks. For those that don't know what that is - it's one of Notre Dame's newspapers that they put out like every two months or something. Anyway, my wife and I will have an article in there this month or possibly next month talking about our battle with this disease. So be on the lookout for that.

I'll try and make my internet absence a little shorter in the future.

FINALLY - REMISSION!

2009-06-24T20:21:00.000-04:00

Today on our trip to Chicago, we got great news. Jonathon's leukemia is in complete remission! That's the best news we could have hoped for.

Now to get to work on getting him stronger! Thank you to everyone for your continued prayers.

Looking Forward

2009-06-22T11:50:00.003-04:00

(Allison - I'm gonna answer your questions in this post.)

It's been over 4 weeks since I came home from the hospital and overall, I really don't feel that much different. I have noticed that when I do stuff around the house, and then I go to rest, it doesn't take me quite as long to recover from the activity. That's about the only noticeable improvement I've seen. My face isn't quite as puffy as it once was and my hair is slowly returning.

We haven't heard anything yet from the hospital about my biopsy and that was expected. This time they're testing for more things than they normally do. They're looking for whether or not the cancer is gone; How many new healthy cells are mine; How many cells are the donor's. All those tests take time. Normally, we would hear the results inside a week, but they did tell us this time that it may take longer. Last Tuesday's biopsy was however the worst one I've ever endured. Very painful. Today, the entry area is still sore and swollen.

Allison - I hope you and Steven get good results! We're thinking of you as well.

I have decided to take walks down the street every day to help with my stamina. Hopefully after a few weeks of doing this once or twice a day, I'll start to see an improvement.

Slow Road

2009-06-15T16:27:00.002-04:00

After a few weeks at home, not much has changed really. My strength is returning slowly, but I still get tired very easily. I try to do small stuff around the house though, like cleaning up things and general tidying up.

Yesterday I spent the day on the lake at my Mom's. We went for a pontoon ride and just hung out. It was nice to change my surroundings.

Tomorrow and Wednesday I return to Chicago for a bone marrow biopsy and labs. This biopsy is a big one. It will determine if whether or not all the cancer cells have been destroyed. So, naturally we're all hoping for a positive outcome.

Still Recovering...Slowly

2009-06-09T14:38:00.002-04:00

After a week of being at home, there's not much new to report. I still feel very weak and fatigued. I try and get up and about as much as possible, but I still get winded very easily. Small tasks are still very taxing on my body. I usually can't make it through the day without napping for an hour or two. For some reason, the last few days my bones have started to ache. At first, I thought it was muscle related, so I tried doing stretches and things like that, but nothing helped. I don't know if it's my marrow cells growing back or what, but every bone in my body aches. However, between watching movies, television shows and honing my skills as a modeler, I've been keeping busy.

I return to Chicago tomorrow for a brief visit for labs and a consultation with my doctor.

No Place Like Home

2009-06-02T16:08:00.006-04:00

Freed of my hospital prison walls, I am finally home after my 20 day stint at the University of Chicago. It feels so good to be back behind my own walls, on my own couch, and eating/drinking my own food. I'm very tired still and weak from the transplant. It's amazing how little activities require so much energy. (i.e., getting dressed in the morning; taking a shower; fixing a meal for myself.) It's the little things that I once took for granted that are now remarkable feats that I have to conquer daily. I'm still getting winded and my heart feels like its going to explode after a few minutes of activity. So, I rest and nap when I can, until my strength returns.

It's damn good to be home though! Here's some pics of the last model I finished in the hospital. It's a '69 Chevy Chevelle.

Getting Out...

2009-05-31T14:20:00.004-04:00

Today arrived and the doctors greeted me with a pleasant surprise: They're releasing me tomorrow! My white blood cell counts have continued to rise. Today my white counts were at 8.9! So, both my doctors, Dr. Stock and Dr. Liu (pictured below) see no reason for me to stay any longer. I'm grateful for the care that they've given me in the last few weeks. All of my nurses and nurse's assistants have all done a spectacular job in taking care of me. I couldn't have asked to be placed in better hands. So, thanks to all of you!

Since my counts were up, they allowed me to go outside today too. It was very nice to smell fresh outside air for the first time in 3 weeks. This is a picture of my sister and I.

More Good News

2009-05-30T18:30:00.004-04:00

The good news keeps coming from my daily blood labs. My white blood cell count continued to soar over night and is resting at 5.0! Today is the last day I will get the Neupogen shot as well. (The Neupogen stimulates growth of those cells.) The doctors took me off of the IV pumps and are converting those drugs to pill form too. All wonderful signs of my returning home very soon.

Since my hair has begun to fall out pretty bad, I had my sister buzz my head today. I'm officially a q-ball now.

My Mom and my sister are staying with me this weekend. So, it's nice to hang out with them. We're getting caught up on Bones and Dexter.

Great News

2009-05-29T10:50:00.002-04:00

After getting two units of blood last night, Katie and I received some very good news. My white blood cell counts soared from .3 to a whopping 1.6! That's a huge comeback in 24 hours. Normal white counts are between 4.0 - 11.0. With this being day 10 past my transplant, I'm supposed to be on the rise slowly with my counts. So a huge jump like this wasn't exactly expected by us. One of the secondary doctors who sees me on a daily basis told me this morning that if I continue to do well, I could be going home early next week! We were very excited about that. But at the same time, I don't want to leave here until I have high enough counts so my risk of getting sick is minimized.

"Name's Bruce Mate!"

2009-05-27T22:12:00.005-04:00

So, I had a dude-nurse all day today named Bruce. Every time I hear the name Bruce I always think of the big-ass shark from Pixar's Finding Nemo.

"I am a nice shark...Not a mindless eatin' machine. If I am to change this image, I must first change myself. Fish are friends, not food."

Ah, that's classic right there.

Anyway...my platelet counts tanked today for some reason. So, as a result, I'll be getting another transfusion tonight. Other than that, I don't have anything new to report. But I did finish another model. Here's a '70 Boss 302 Muskrat...er, I mean Mustang.

Another Day Down...

2009-05-26T23:18:00.006-04:00

Today went by fairly uneventful. My wife Katie came back to stay with me for the week. It's relaxing to have her company again.

The past few days I've been experiencing a burning sensation on the bottoms of my feet. I thought it was from the radiation or something, but the doctors tell me it's from this drug called Prograf. I've been getting it since my transplant. It's an anti-rejection type drug. Now, they've got me on another drug to help with the burning. More pills...ugh.

Thanks to my mother 'n law Sue and her sister Linda, I have 5 more models to build. So that will help pass the time. And I finished another one today. (Sorry Gene...it's a Chevy. But not to worry, there's another Ford coming in the near future.) This is an '05 Chevy Corvette C5.

More of the Same

2009-05-25T18:58:00.003-04:00

Greetings from Chicago. Yes, I'm still here. This past weekend went agonizingly slow. Being here has shown me the value of being at home. I thirst for the outside. My family has tried to stay with me as much as possible, and I'm grateful for their efforts. My wife has been at home since Friday, taking a deserved break from being here. She comes back tomorrow, and I can't wait to see her. Donna came up for the day today and we spent the day watching movies and tv shows. I have discovered that Bones and Dexter are two good shows I've been missing out on.

Last night I needed a platelet transfusion because my levels dropped too low. My hemoglobin is hanging around 9.0, while my white blood cell counts are still at .2. They tell me my white counts should start to climb soon and then I can go home. I cannot wait for that to happen. I'm going stir-crazy here. I've been walking 1/4 mile on the treadmill every day to try and keep my strength up. But I'm still very weak. Even getting dressed in the morning is exhausting.

My doctors say I'm doing great and could be home as early as June 5th. Man, do I hope so.

Walls Closing In

2009-05-21T20:28:00.004-04:00

I can honestly say that these hospitals walls are starting to close in on me. I'm going stir-crazy sitting here. I've tried to be up and around as much as my body will allow me, but that isn't much. My energy levels are virtually non-existent. I would give anything just to go outside once and breathe some fresh air. But my blood counts are way too low for that.

My Godmother Darlene came to visit me today though. It was very nice to see her. I think her cupcakes kept more weight on my bones in the past than anyone else's food combined.

I also finished an '05 Mustang model. (Here you go Gene! You said you wanted a pony...here you go.)

More later...

Stem cells infused!

2009-05-19T19:54:00.000-04:00

Jonathon is super-sleepy today so he has asked me to make today's post. Before the stem cell transplant, they gave him 50mg of Benadryl via IV to prevent an adverse reaction, and then 1mg of Ativan via IV to prevent nausea too... that'd be enough to knock me out for the rest of the week!

The transplant itself was as anti-climactic as the doctors said it would be. The pouch of stem cells arrived, looking much like a more watery version of a red blood cell transfusion, and they hung it on the IV stand, and pushed it in over about an hour (a little longer than they said it would take). Jonathon slept through it for the most part, but Peggy did get him to wake up for a few photos.

From Bone Marrow Transplant

You can almost see the bag of cells hanging on the IV, and you can see the red-line going into him. Dr. Stock is standing closest to Jonathon - she's a world-reknowned specialist in Jonathon's kind of leukemia, especially in adolescents and young adults. And more importantly, we really think she's a great doctor and a very nice lady.

They tell us the hard part is coming in the next few days to a week when the effects of last week's radiation, combined with the natural response of the body to the transplant, and the effects of the anti-rejection medications all start to take effect. They're giving him as much preventative medication as they can to help, which I think is also contributing to his sleepiness.

So we're just letting Jonathon sleep off the drugs, and I've become engrossed in the Twilight books to keep me busy. Peggy and I were both joking that things were so uneventful today we could have both gone shopping. :)

Thank you everyone who was praying today and who continues to pray for Jonathon's recovery. To be surrounded by so many wonderful, caring people is truly a blessing and I have no doubt that it makes a difference.

Transplant Tomorrow!

2009-05-18T20:02:00.005-04:00

Despite the lack of movie choices here in the hospital, spirits are high with the news of my bone marrow transplant happening tomorrow at 10:30am. They tell me its more like a non-event really, in that it only takes about 15 minutes to administer the new stem cells. They'll be keeping a close eye on my blood counts to make sure nothing goes awry, but everything is proceeding on schedule so far.

I had to have two units of blood today in a transfusion because my hemoglobin was hovering around 8.0. But that's done and out of the way, and my appetite is showing signs of returning as well. I had two bowls of potato soup and some Frosted Flakes cereal today. Hopefully tomorrow it will be even better.

I also did some walking on the treadmill. I walked 1/3rd of a mile yesterday, and today. I also completed my Knight Rider model that I'd been working on.
More tomorrow!

Quiet Sunday

2009-05-17T18:28:00.005-04:00

The radiation and last dose of chemo has officially wiped my appetite off the map. Since yesterday, I've had a bowl of soup and a few crackers. And I don't foresee me eating anything for the rest of the evening. I don't feel nauseous however, just very full, like I've over-eaten or something. And that anything I might try, would just come right back up.

The nurses have been taking good care of me too. My white blood cell counts have been hanging almost in the normal range, so they actually let me go outside for some fresh air today. So that was nice.

Special thanks to Liz, Mylove, Amee, and Dynetta, who brought me chicken!

Thank goodness I don't have any more chemo or radiation to endure. I'm just hanging around getting my blood checked every so often so they can monitor my counts. My transplant is still scheduled for Tuesday morning. And from there...it's onto recovery, building my counts back up, and going home!

Katie headed home today for a short break so she could attend her awards dinner Monday night. She deserves it so much. I'm so very proud of her. She'll be back up here early Tuesday morning in time for the transplant. In the meantime, it looks like movies and models with my Mom keeping me company!

Taking it easy, appreciating boredom

2009-05-16T18:25:00.000-04:00

Jonathon is doing pretty well considering that the last three days he had 2 radiation treatments a day and then last night a super-high dose of chemo. A little tired, and a little less hungry than he's been lately, but overall - still a little fiesty. Which is good.

We've had a few visitors, including a Notre Dame alum - Damon Sinars and his family.

From Bone Marrow Transplant

But overall, the hospital is stay is kind of boring at this point - which is just what we want. No drama please! Jonathon is building a Knight Rider Kitt car model, I've been reading books and playing a few computer games (along with doing some smaller things for work).

Peggy's been taking lots of pictures, which we've posted on my Picasa site for those of you who want to see what's happening. (So I'll have to start putting in my contacts and wearing makeup every day... ;) )

We'll keep adding to the album as our stay continues.

I'm Radioactive Baby

2009-05-14T19:42:00.003-04:00

You know, as odd as it may seem, a hospital is the worst place to get good sleep. Granted, it's a louder place than home, but when they come in checking vitals every 4 hours, it gets really tough to get a good night's sleep.

So far, the radiation hasn't affected me too terribly. I don't feel nauseous or anything. My monstrous appetite has slowed a little, but that's about it. I'm still eating pretty well though. Katie and my Mom have been wonderful at finding different foods close to the hospital for me.

The doctors also did an ultra sound on all my vital organs this afternoon. It was the longest ultra sound in the history of the world: nearly two hours long! I don't know what they were searching for, but it took forever. Afterwards, my chest looked like I got hit by the green slimer ghost from Ghostbusters.

I started work on my car models today. As I complete them, I'll post pictures. It helps pass the time in between exams and Dr. visits.

More later...

And So It Begins...

2009-05-13T18:55:00.007-04:00

My search continues for hot chick nurses scattered about in this hospital. I still have yet to convince Katie to dress up like one and play doctor on me though. But, don't fret, 'cause I still have 29 days of effort left on that front. What does my wrist band read? 'Relentless.' Yup.

Today, I started radiation treatment, or TBI as the folks here call it. I forgot my acronym translator back on my starship, so bear with me. TBI stands for total body irradiation. Yep. Not one body part, toe nail, or hair folllicle are missed under the spectrum. And...wait for it...I have pictures!

This picture is what the machine looks like that gives the radiation.

This is a shot of the actual table they lay me on for the procedure. They have to make custom size enclosures for my head and feet. And oddly enough, they use rice bags to take up the space in between.

This is a shot of me actually in position and ready to take on the radiation.

One of the nurses took this from above me. My face looks strangely creepy. The whole building boxes and rice bags to me seemed very Michigan backyard to me. I was waiting for someone to start arguing about Nascar and beer.

My first day of radiation is done and I don't feel much different. My feet are still swollen, but not as bad as yesterday. They gave me a diuretic to help, so I'm peeing like Sea Buiscut, but I think it's helping.

More later...

Back to the Grill Again

2009-05-12T20:16:00.004-04:00

After months of waiting, we're finally here at the University of Chicago Hospital, where I'll be staying for the next 30 days. I'm scheduled for radiation twice a day for the rest of the week, followed by a stint of Saturday and Sunday-filled chemo days. This will most likely wipe out any remaining cancer cells, as well as my immune system. As a result, the same rules apply with hospital interaction with visitors and gifts. (No sick visitors, flowers, or fresh fruit.)

Katie and I are asking those that wish to send cards or gifts to NOT send them direct to the hospital. The postal service around here and inter-hospital mail is too slow and undependable. (We discovered this the first time around.) So, if you want to send anything, send it to my home address, or give them to my Mike Rowland in the ITC and he'll make sure I receive them. Our home address is:

Jonathon & Katie Rose
25558 Serenity Drive
South Bend, IN 46228

Aside from a little fatigue and swollen feet, I feel pretty good. We're not sure why my feet are swollen but the doctors plan on checking that out tomorrow. Over the weekend, I had to take a drug that's supposed to help with mouth sores that will probably happen from radiation. The drugs made my eyes, lips and cheeks puffier than normal. My feet were swollen before I started the drug over the weekend though. Kinda strange. I look down at them and they look like someone else's feet.

Time for Fringe. Out.

Pre-Transplant Party

2009-05-11T15:20:00.000-04:00

Saturday, we held a big party to celebrate the next phase of Jonathon's treatment. We've got pictures posted for those that want to see. Just click the picture below to view the whole album.

Thank you to the whole family and all the friends that showed up. We are so lucky to have each of you in our lives.

2009-05-09 Pre-Transplant Party

Getting Closer...

2009-05-02T13:56:00.004-04:00

On Thursday, we held the bone marrow drive on campus and we had great success with it. Lots of people showed up and gave their support, both monetarily and going under the 'swab.' So I'd like to personally thank everyone for coming out for that. I'm not going to mention the fact that the pizza they ordered made me sick afterwards, but hey, I survived.

For those that are interested, you can check out a few pictures from the drive.

Bone Marrow Donor Drive

I am however, allegedly done with chemotherapy though, according to my doctors. And that's been really nice. Being able to eat what you want is such a nice feeling. My biggest battle lately has been my headaches...they have been horrible. They start about 15 minutes after I wake up and are with me until I go to sleep. I've been living off of Ibuprofin. I'm scheduled to enter the hospital for the transplant on May 12th. Once my transplant is done, hopefully it will be smooth sailing from that point forward.

Good News This Week

2009-04-21T09:00:00.002-04:00

Yesterday we received some good news from my doctor in Chicago. I had a bone marrow biopsy on Thursday of last week to determine how much of the Leukemia is still in my marrow. The results came back with a significant reduction of cancer cells. I'm not in remission yet, but very close. So that was good news! The downside of this is that they want me to have more chemo before my transplant in May to keep the disease under control. The chemo will probably start again later this week. I'm not looking forward to that, but overall progress is being made, and I'm happy about that.

I've been eating like horse these last two weeks because I haven't had chemo. I've gained nearly 15 pounds in the last two weeks because of that. It's been so nice to be able to eat what I want and just enjoy food again.

Help Us Give Something Back

2009-04-15T09:01:00.002-04:00

We are extremely blessed and lucky to have found a full match for Jonathon's bone marrow transplant, but there are thousands of people that still need a match. To help us give something back, a team of friends from Notre Dame and family has organized a bone marrow donation registry drive in honor of Jonathon. Here are the details:

Date: Thursday, April 30, 2009
Time: 10 AM - 3 PM (No appointment needed!)
Location: University of Notre Dame - Information Technology Center (Grid Room - Room 121)

It is easy and painless to get registered, and should only take 15 minutes (most of which you'll spend filling out a health information sheet). You must be between 18 and 60 years old, be willing to donate to any patient in need, and meet a few health guidelines. There is a $30 testing fee for non-minority donors. If you have other questions about donating, please call the National Marrow Donor Program at 1-800-MARROW-2.

Please help us give back.

Starting Over

2009-04-13T19:09:00.002-04:00

As if having Leukemia, my wisdom teeth pulled, extreme fatigue, and everything else going on, I've lost my wallet to boot! I'm blaming my chemo-brain on this one. Chances are, its in my house somewhere. But I have no idea where. I've re-traced my steps a thousand times. So, today began the quest of starting over from scratch, with getting copies of my birth certificate and social security card, so I can get a new driver's license. Ugh. What a pain. All my credit cards had to be cancelled too, of course.

I'm not scheduled to get chemotherapy at all this week. My doctors decided to let my body regain some strength before my transplant takes place. As a result, my appetite has returned with a vengeance. I've been eating non-stop. Food tastes good again! So, I'm taking advantage of this while it lasts.

I went and saw 'Knowing' with Nicholas Cage today with my Dad. It was a pretty good movie. Better than 'Fast and Furious' was. All the movies I'm really excited about are coming out in May when I'll be in the hospital. Arg.

Fatigue Setting In

2009-04-09T18:49:00.002-04:00

I apologize for the lack of posts and updates. But my neuropathy has set in so bad that I can't type like I used to. So I'm doing this letter by letter. I found out this week that my bone marrow transplant will take place during the month of May. At which time, I'll be hospitalized in Chicago for about 30 days.

Overall, I've been feeling very fatigued from this treatment. It's become very difficult to even move my legs and walk like normal. I don't feel well at all. It's been very hard to stay positive in the face of all this. I feel like I'm letting people down sometimes, but I'm so tired all the time, that I can't help it.

I just wanted to update everyone and let people know that I'm still fighting, even if I can't post every day. I'll do the best I can to bring you updates as my hands allow me to type.

I'm Still Here!

2009-04-02T04:19:00.002-04:00

This 'ol cat is still here. I haven't forgotten about the blog, it's just getting increasingly difficult to type in it, with what's going with my hands. (neuropathy.)

In the last two weeks, I've gotten really bogged down with fatigue and can't do too much besides eat and sleep. It's possible I may have a cold or the flu. I have 1 more day of chemo this week and then 4 again next week with a trip to Chicago in there somewhere.

I just really wanted to remind me people that I'm here and will continue to be posting as my hands allow it. Thank you for all your thoughts and prayers.

Day 66: Making Contact

2009-03-29T08:26:00.004-04:00

I'd like to give a warm welcome Alison and Steve who have been readers here for a few days now looking for inspiration. I'm not sure I'm a pillar of inspiration, but I appeciate the thought behind it. Like me, They have been married four years this month, and are battling Leukemia. They live in Cape Town, South Africa. Alison has commented a few times in the previous post. This is more of a follow-up to that.

I've had 6-7 lumbar puctures with the methatrexate chemo. Not fun at all, but not as bad as the bone marrow biopsies. Forunately, all my puctures have came back clear.

At times it's been very hard to be positive about all this. It's tough to wake up and go 'how crappy am I going to feel today?' But, you do have good days and bad and they give you strength to look for more good days. A friend of mine who went through a similar experience keeps telling me to cheer up and that this experience will make you appreciate life more than the average person. And that's not something you can just 'give' someone.' They have to go through it.

If you're having trouble posting here, feel free to email me at jrose2@nd.edu.

I hope you guys have a good day today.

~Jonathon

Day 63: Remembering to take all the pills

2009-03-25T21:29:00.000-04:00

Jonathon asked me to make tonight's post. He's feeling pretty tired since he had a fever most of yesterday afternoon. Turns out Jonathon forgot to take a bunch of the antibiotics they gave him after he had his wisdom teeth out, and of course, his body couldn't fight off the bacteria on it's own. His fever was gone as soon as I made him start taking the antibiotics again, so hopefully - lesson learned.

The fevers wear him out a lot, so Jonathon spent most of the day relaxing. His dad got him up and around a little by playing Wii with him. And his Aunt Judy brought him lunch. So he had lots of good company today.

Overall - a pretty good day.

Day 61: Chemo and Blu rays!

2009-03-23T19:19:00.003-04:00

Today was kind of a busy day really. My sister hung out with me most of the day and took me to chemo. I had chemo this morning at the SB Clinic and then my LAST lumbar puncture at the hostpital this afternoon. Thank goodness those are over for a little while.

Today was also the best I felt in a while too. In between the chemo and hospital, my sister and I went to Best Buy to pick up some DVD's and out to Wings Etc. to eat for lunch. Aside from the occasional nausea, I felt really good and was in good spirits. It was nice to feel happy and just overall excited about facing the day. And in case you're wondering, as far as the Blu-Ray's...I got:

Days of Thunder/Top Gun (combo pack...coudn't resist)
Underworld - (the first one)
Live Free or Die Hard

I wanted the Survivorman TV series but they didn't have it in stock. That's a travesty in itself!

Day 58: Wisdom Teeth Out

2009-03-20T16:37:00.003-04:00

As if I didn't have enough crap going on, I ended up having to get my last two wisdom teeth pulled today because they were infected and had cavities in them. So, that really wiped me out. Now, I'm on Vicodin for the pain. Yay!

Some of you might be wondering what I've been doing during the day to occupy my time. Mostly, I've just been laying around watching TV when I'm not out and about getting treatment. The last few weeks I've had chemo 4 days a week for half the day, so it makes the days go fairly quick sometimes. I watch movies too, and try to do things around the house to make time pass. I can't play guitar or do my models because my hands simply shake too much and I can't always control them in a concise way. It's gotten too hard to play Xbox because of this too. So, my options have become limited.

My wife and I are celebrating our 4 year anniversary today too. And today is my brother Justin's birthday - so happy birthday bro!!

I hope everyone has a great weekend!

Day 57: Good News with a Toothache

2009-03-20T08:16:00.002-04:00

Yesterday was a good day aside from the horrible toothache I developed in the evening that made me nausous. My lower left gums are swolen from this tooth and I'm not sure why, but it really hurts. I'm concerned about going to the dentist with my blood counts being so low, but I have a call into my doctor to find out the details about that. If I need oral surgery of some sort, I'm not sure if that's a good idea with my white counts being dangerously low as it is. But something has to be done because it's really painful right now.

The new pain meds have really made a difference with my headaches. They don't make me groggy or loopy, and they take care of the pain, so that's good.

I also heard back from Dr. Artz yesterday about the bone marrow biopsy I gave on Wednesday. As it turns out, a lot of the cancer is being wiped out, but there are still some bad cells there. But he stressed that a significant amount of progress has been made and we're going to continue on this same course of treatment because the Leukemia seems to be responding well to it. We are also still pursuing the bone marrow transplant as well. I'll have more details on that as they become available. We don't return to Chicago until March 30 for another biopsy. So, we have some time to work with.

Day 55: Chicago Day

2009-03-18T20:18:00.003-04:00

My entire day was spent in Chicago getting a variety of things done. Most of my time was spent counting ceiling tiles, finding imperfections in wall paint, and listening to my iPhone's music. I started off getting a lumbar puncture with chemo, followed by a bone marrow biopsy. We believe it was 4th or 5th one. We've lost count now. So, my lower back feels a bit like a crater at this point. Then, I had to do a pulminary test of my lungs and heart. That was kind of interesting. They injected me with a contrast dye, much like they do with a CT Scan, and then they placed me in front of a machine that takes photos of my heart and lungs about every .3 seconds. The tech told me that my heart and lungs looked good. And then, because of my headaches, they scheduled me for a blood patch on my spinal column. For those that don't know, the blood patch can actually help seal off any leakage of spinal fluid that is as a result of the lumbar puncture. This leakage can cause severe headaches which is what we're suspecting I'm enduring. However, as it turns out, having the blood patch done depends greatly on what your platelet levels are in your bloodstream. Mine are currently at 47,000. They won't do a blood patch unless the levels are 70,000 or above. Obviously if my blood won't clot enough, the patch really isn't going to help anything. So that was a bust. Instead, I got some new medication for the headaches called Fioricet. Apparently it's not quite as strong as Percocet, but has codine and caffeine in it to help, and it's regularly used to treat migraines and high tension headaches. So, hopefully, it'll provide me some relief when they get bad enough.

I don't have anything going on the rest of the week except for a blood draw tomorrow at Dr. Park's office.

This week has been riddled with nausea too. Nothing sucks more than trying to eat when you feel like it's going to come right back up. I have been fortunate enough not to have thrown up yet, but I've been close a few times. Hopefully not having as much chemo this week will help with that some too.

Day 53: Not as Planned

2009-03-16T15:20:00.002-04:00

Even when you think you may have your day figured out, someone is bound to throw you a curveball and change it all up. I was scheduled for chemo and a lumbar punture today, but all that was changed this morning upon arriving at the Dr.'s office because the drugs weren't there. I'm still not exactly sure what happened. But, my chemo has been rescheduled for tomorrow morning in Mishawaka. Because of my recent battle with headaches, they postponed my lumbar puncture today too, but will do it in Chicago on Wednesday. In addition, they ran my blood this morning and decided that I will get platelets in a transfusion tomorrow as well. So, after my chemo in the morning, I'll be going to the hospital for that.

Today started with another horrible headache in the morning that lasted until around lunch time. I took a half of a Percocet and that knocked me out for a little while and did dull the headache some. My doctors aren't sure why my headaches have intensified, unless it's from the lumbar punctures. It's possible that the imbalance of fluid in my spinal area is causing the headaches, but we don't know for sure. They did tell me there's things they can do like a blood patch to help with that imbalance. Which, is why they'll take a closer look at the situation on Wednesday in Chicago. I certainly hope they can do something, because these headaches are miserable! They completely incapacitate me.

More to come...

Day 52: Hopefully an Easier Week

2009-03-15T20:34:00.002-04:00

This week should be a little easier for me as I only have 1 day that I have to get chemo, and that's tomorrow. (Monday.) Wednesday we go to Chicago for more preliminary bone marrow tests and another bone marrow biopsy to see how I'm responding to treatment. It's quite possible that I could be in remission or at least partial remission by then. That's what we're hoping for.

Tomorrow we meet with Dr. Park at the SB Clinic and I receive chemo in the morning. Later in the afternoon, we go to St. Joe Med Center once again for a lumbar puncture with chemo.

Hopefully the headaches and fatigue won't be as bad this week. We'll have to see.

More later.

Day 51: More Headaches and Fatigue

2009-03-14T23:09:00.003-04:00

I apologize for the lack of posts the last few days. My neuropathy in my hands has increased this weekend and it's making it hard to type posts and even respond to email.

I'm still feeling very worn out and fatigued. I'm getting to the point to where I can feel when my blood counts are low and when I'm in need of a transfusion. I feel like my body needs serious reinforcements to be able to just walk around sometimes.

For some reason, the weekends come with a feeling of nervousness and anxiety. It's not anything looming or threatening on the horizon, it's just that overall feeling that I tried to describe in previous posts that returns without failure. Ativan seems to help with it, but I can't help but think it must have to something to do with getting 4 days straight of chemo and then having to deal with those effects afterwards. At times I'll get moments where my hands tremble badly and my body will shake, almost like I'm suffering a huge chill. But I'll cover up with a blanket and then get too hot. It's very strange.

All week my headaches have dramatically increased too. I'm not sure why either. But it seems like when I try to do too much around the house (which, really isn't much), the headaches just seem to overwhelm me. And sunlight seems to make them worse. Nothing is harder than watching Spring unfold outside while the temperatures rise and I'm stuck inside closing the blinds to keep out the unwelcomed light.

My sister and law Kelly is still in town and between Katie and my mother in law, they've been taking wonderful care of me. Whether it's cooking meals or just giving me a warm cloth over my forehead for a bad headache, they've been there and it's been so wonderful. I can't thank them enough for all they've done for me. Just merely having someone around is soothing.

Day 49: It's going to be a long night

2009-03-12T20:02:00.000-04:00

This morning, my mom (Katie's mom) took Jonathon in for his chemo. His hemoglobin counts dropped below 8 again, so they decided he needs another transfusion. After finishing up his morning chemo, they setup an appointment at the hospital here in South Bend for his transfusion. And unfortunately, things are running a little slow tonight. We finally got started on the first unit of blood at 7:15 pm. It takes roughly 2 - 3 hours per unit of blood to transfuse. So with 2 units of blood on schedule for tonight... we'll be lucky to get out of here by 1 am.

So, we've got a long night ahead, but hopefully tomorrow Jonathon will feel a little perkier with new blood and no chemo.

Day 48: Percocet

2009-03-11T20:19:00.003-04:00

I'm currently blogging from cloud 9, lower east side. No really. I had killer headache this morning and into the afternoon, so I took Percocet as a stronger alternative to Tylenol and holy canoli...I'm still groggy from it. That's one strong medication! I've never taken it before. It took away my headache eventually...along with my whole afternoon! I don't think I'll be taking that again any time soon, unless I want to sleep all day. I'm not allowed to take Ibuprofin, Aleve, Advil or any of those other pain meds that contain aspirin, so Tylenol is pretty much all I can take for now. And Percocet. But I'm going to have to be pretty desperate to take that again! It's been almost 8 hours since I took the pill and I can still feel the effects from it.

Tomorrow is my last day of chemo for the week in Mishawaka. Next week will be easier with only a few days of treatment, rather than 4 in a row. So, that will be nice. On the 18th we'll be off to Chicago for more tests too. Yay.

For now, I'm hanging with the wife, watching Ghost Hunters and gearing up for tonight's episode of LOST.

Day 47: First Time for Chick-Fil-A (No Joke)

2009-03-10T18:32:00.002-04:00

This morning's chemo started off with just trying to keep dry going from home to the clinic. Wowsers...was it raining it's ass off out there, or what? But we got there to the Mishawaka clinic and got the job done with the chemo. Today's session made me a little nauseus afterwards, but after a brief stop at Chick-Fil-a, we got home and I took my Compazine (anti-nausea med) and that seemed to help. No cookies ended up being thrown up after all. The food was good though...loved the nuggets and the waffle fries. Although I did suffer a headache this afternoon that seemed to go on for hours. It's still slightly there, tickling the top of my head and behind my eyes, but not as bad as it was.

Tomorrow we go to the South Bend Clinic for more chemo in the morning and then my sister in law Kelly is coming up from Texas to visit me! I hope that I can be a good host to her and my energy levels stay up so I can get quality time with her while she's here.

In the meantime, I'm kicking back with the wife watching Good Will Hunting.

More later.

Shop to help support the Leukemia & Lymphoma Society

2009-03-09T20:57:00.000-04:00

Like shopping at Banana Republic, Gap, or Old Navy? Make your purchase more worthwhile by having part of the proceeds go towards the Leukemia & Lymphoma Society. March 12 - 15, when you shop at Banana Republic, Gap, or Old Navy, you can get a 30% discount and 5% of proceeds can go to the Leukemia & Lymphoma Society. All the details are at:

http://www.leukemia-lymphoma.org//all_page.adp?item_id=552506

Make sure you sign up for your coupon to take advantage of the deal and help out the LLS!

Day 46: Ativan to the Rescue

2009-03-09T19:25:00.003-04:00

I don't know what's changed, but Saturday I developed this sort of inner anxiety that just feels horrible. I'll try and describe it the best I can. I have a handle on what's coming as far as treatment, and I'm okay with it. So, it's not anything that's on the horizon that generally feels threatening to me. It feels like my heart is racing. It feels like I'm being overwhelmed with a feeling of dread. I get hot and then cold flashes, and my hands and body start to shake. I can't stop thinking about it, so that makes it worse. I've tried breathing exercises and whatnot, but no matter what I do, the feeling doesn't go away - until I discovered Ativan.

This morning I woke up feeling that way for the 2nd day in a row and decided to ask my nurses about it at my chemo session this morning. They suggested a higher dosage of Ativan. I had already been taking the drug for nausea, but it also has another positive side effect: it calms my body down. And it's so nice to feel without anxiety for the first time in a few days. The original dose my doctor had me on was .5mg every 12 hours. That's a very small dose and the nurses agreed, but understood that my doctors might not have been wanting to over-medicate me. So, I can take a higher dosage, and we'll be getting that officially cleared with my doctors probably tomorrow. This is by far my favorite drug now! Anything that helps me feel a little more normal - sign me up!

I have chemo the rest of the week through Thursday. Thankfully, there's no visit to Chicago this week though, so that's nice. Tomorrow's chemo is in Mishawaka for about half the day, maybe a little less.

More later.

Day 45: A little anxious

2009-03-08T16:23:00.000-04:00

Jonathon asked me to make today's post. He's feeling kind of anxious in general today. There's nothing in particular that seems to be bothering him - just feeling pretty anxious.

This week will be another busy one - chemo on Monday, Tuesday, Wednesday and Thursday. Monday will be another all day kind of thing with chemo via IV in the morning, and a lumbar puncture with chemo in the afternoon. The rest of the week is just chemo via IV. What's really nice though is that there are NO trips to Chicago this week. That'll be much easier on all of us.

Yesterday, Jonathon spent the afternoon up and his mom's, and I had a nice quiet afternoon alone. He definitely needed the change in scenery, and I needed the time to reset. It's amazing how we all can handle this much. To think that this all just started 6 weeks ago...

For those that are interested, we are working with Angie Wotring to coordinate a bone marrow donor registration drive. Once we have all the details, we'll share them here.

Day 43: Bad Nausea Week

2009-03-06T11:59:00.003-05:00

It can be really hard to be positive after a 4 day long week of chemotherapy. This week has really taken its toll on my body. They tell me that Monday was the day I received the nastiest drug - Cytoxin. I'm not sure if I spelled that right...but either way, I've been battling nausea all week long, all week strong. It's that feeling of whether or not you can't tell if you're hungry or if you're going to hurl. The past few days I haven't ate much at all. It's so hard to try and force food down when you don't know if it's going to stay there.

It's so nice outside too! I keep taking my dogs out just to feel the nice warm air. I know it won't last, but it's nice while it's here. And I know the dogs love it.

It's nice to not have any sort of chemotherapy today. Hopefully this weekend I can recover a little before starting another 4 day stint of it next week. The good news is, is that so far we don't have to go back to Chicago until the 18th. That's when I'll get another bone marrow biopsy and catch up on some preliminary tests for a bone marrow transplant. It's possible I could be in remission by then too. Time will tell.

More later.

Day 42: Chicago Not as Planned

2009-03-05T00:04:00.002-05:00

Today did not quite go as planned, that's for sure. On the way to Chicago, I developed some serious nausea. In the first hour that we were there, I lost my lunch twice in the bathroom. And that was even with taking anti-nausea meds. After they drew my blood, we found out that my hemaglobin level had dropped to 7.4, so I had to have a blood transfusion with two units of blood. Unfortunately, each unit of blood takes about 3 hours to administer, so much of our time was spent waiting for that to take place. Much of the other tests that were scheduled for the day had to be rescheduled for a later time. I still have quite a few bone marrow transplant tests to do...most of which are pretty simple...it was just a matter of there being enough time in the day to get it done.

I do feel a little better having gotten some blood and the nausea seems to have subsided for now. But I've still got one more round of chemo to get through this week later today. We go to see Dr. Park first and then we're going to Mishawaka for the chemo again.

At least Friday I get a day off from all this.

More later.

Day 41: Tuesday's Gone

2009-03-03T19:56:00.003-05:00

Even though I had shorter day of chemo today, it was harder to get through. I felt the effects much more than I did yesterday. I've been nauseous most of the day even with the anti-nausea meds. My stomach is stuck between that state of not knowing if I'm going to throw up or if I'm just hungry. It's not a good feeling.

Other than that, my energy level was okay throughout the day. I felt like I could walk around and do minimal activities. But now it's 8pm, and I feel very tired and exhausted.

Tomorrow is going to be a long day in Chicago with lots of preliminary bone marrow transplant tests and more chemo. I'm trying to look forward to the weekend when I won't feel like so much like a pin-cushion or a lab rat. That's about all for now.

More later.

Day 40: One Day Down

2009-03-02T17:44:00.003-05:00

After a really long day of hospital visiting, we're back in the comforts of our home. The day began at the South Bend Clinic, at 7:30am where they administered the chemo through my port for the first 4 hours. Which, basically meant sitting there twiddling our thumbs all that time, while the IV ran its course. Thankfully the night before I uploaded most of my music to my iPhone, which made the time pass a little faster.

From there we went to St. Joe Med Center for a lumbar puncture with chemo. The doctors finished with me around 3pm, and then I was required to lay on my back, completely still for 2 hours afterwards to avoid any harsh side effects. So much of this treatment is really just waiting and waiting. We're constantly searching for things to do while we sit and wait.

Tomorrow I'm going to the Mishawaka Clinic for more chemo, but it's only for half the day. I will most likely be home by noon. So, it won't be nearly as intense as today was.

Earlier this evening I received a call from the University of Chicago to discuss some insurance issues and the nurse told me on the phone that they have 19 preliminary bone marrow matches for me! Now, these people are just preliminary matches so far, but that's good news and a good start nonetheless. So, it was nice to get some good news today.

Day 39: Rigorous Week Coming

2009-03-01T17:47:00.002-05:00

This week is going to be a busy one, that's for sure. Tomorrow begins Course 2 of my treatment, and it's going to be filled with chemotherapy. Monday we start at the South Bend Clinic at 7:30am for the start of the chemo. We'll be there for 3-4 hours, we're told, and then from there we go to St. Joe Med Center for a lumbar puncture with chemo. Tuesday will be the same thing, except without the lumbar puncture.

Wednesday, my parents, Katie and I will go to Chicago, where I will undergo more chemo and have preliminary bone marrow transplant tests done. I don't know what that entails just yet, but I'm sure the details will be forthcoming. My parents will also be tested for bone marrow matches.

Thursday, we'll be back here in town for another morning of chemo.

I'm worried about how my body is going to handle 4 days straight of chemotherapy. Never before have I had this much chemo in that short amount of time. I guess I'll find out soon enough. I do know that the chemotherapy drugs they are using this week are different than what I've received before, but I don't know the dosage amount.

I'll try and update you guys as best I can this week based on how I'm feeling. If I can't personally post, I will try and have Katie update this blog with what's going on.

Thanks for reading...again.

Day 37: Bone Marrow Info

2009-02-27T19:02:00.004-05:00

Before we watch one of the greatest classics of all time, Ghostbusters, I thought I'd make a post. That's right...I ain't afraid 'a no ghost. Anyhoo, this post actually is going to highlight what was talked about in the previous post's comments.

We've had a lot of people asking about getting checked for bone marrow matches. And we can't tell you how much we appreciate you guys volunteering to do this. While the chances are slim that you'll match me, you could be helping to save someone else's life down the road. Or, you could end up matching me! There's a less than 1% chance, but that's better than nothing.

Donna has done some research and she talked about it in the comments in my previous post, but for those that missed it...here's what you can do:

Go to this website: www.marrow.org and sign up. Doing this for a fee of $52.00 they will send you a tissue typing kit. That consists of several swabs that are then used to collect DNA. They are then sent back to their labs. You will then be part of the National Bone Marrow Registry.

In addition, Angie is trying to put together a bone marrow drive at ND for those that are interested. More information on that can be found here: http://friendsofjonathonrose.blogspot.com/

Thank you very much Angie for working on that, and I really hope it works out! We feel so blessed to have everyone's support in this. We also feel that everyone is fighting the good fight right along side me, and I can't thank everyone enough for what they've done. It's going to be a long road through the next few months, but we're driving full steam ahead.

I do not yet have confirmation of a match from my doctors in Chicago yet, but hopefully by next week when we meet, they may have a few possible matches. I don't know. Being that I'm a white, Caucasian man, my chances on finding a match are pretty good, according to my doctors. Let's hope this is the case.

Okay...now I have some serious treatment to attend to with Bill Murray and the Ectomobile. Peace in. Jonathon out.

Day 36: The Unknowns Ahead

2009-02-27T01:03:00.004-05:00

My stomach decided it was going to wake me up again this morning at 1:04am, so now that I'm up, I figured I'd squeeze in a post before trying to go back to sleep. I'll admit, upon hearing the news Wednesday, I was very emotional and afraid of what was to come. But my doctors are still optimistic, both Dr. Park and Dr. Artz from Chicago. They both told me that, while this isn't the news they were hoping for, it's expected, and plan B is in place already. Plan B is starting next week with 4 days straight of chemo with one trip to Chicago included. That's 3 days here and 1 day there in Chicago getting chemo and having some pre-bone marrow transplant tests. As Katie mentioned in the previous post, my Mom and Dad will be both be going to be tested as well. We're still trying to organize a way for those people who want to contribute to doing that too. Katie and I are working on those details. We know people want to help out and get tested, and for that, we are truly grateful. Chances are, you may not come back as a match for me, but someone else in dire need could have their life saved by you.

As the next couple of days go by, we'll have more information on what we're going to do and our next course of actions.

I still have Leukemia, but it doesn't have me. I have too much I want to accomplish in this life for this to get me down. Yeah, I'm scared about this next course in treatment, but I'm also hopeful that between my strength and the determination of my doctors, there's no reason why I can't beat this.

Thank you again for all the support that's been displayed here in comments. It really helps keep me going and gives me courage to be stronger to face the unknowns ahead.

A little different road than expected

2009-02-25T20:13:00.000-05:00

Well, the news today was definitely not expected based on how things had been going. Today, Jonathon's doctor in Chicago called and said that his bone marrow biopsy on Monday showed that Jonathon still has leukemia. So he will need a bone marrow transplant.

The good news is that even though his sister Jenna is not a match, they did search the registry, and there are a few matches for him. Also when they do the bone marrow transplant, that would mean he'd get better faster, and probably not need three years of chemo. The not as good news is that these matches may be anywhere in the world, so to try to get things moving a little faster, they will test Jonathon's mom and dad on Wednesday. They are only a 1% chance of matching, so they don't really expect them to match, but just in case, they will check. If Peggy or Bob don't match, they will work with the registry to find out where these other people are and coordinate a donation.

A lot of you offered to get tested for a bone marrow match when this all first started, and while we are so touched that so many of you are willing to do this, since there are already matches in the registry, we don't need you to do this.

What we do need is your continued prayers and positive thoughts. We are so lucky to have so many special people in our lives, and we know we're going to need to lean on you, especially since the road ahead keeps changing on us. Thank you for being there for us.

Day 33: Milkshakes Bad for the Tummy

2009-02-24T19:30:00.003-05:00

Apart from the freezing morning temperatures, today wasn't too bad of a day, really. It's my second day without Predisone and I think I'm starting to feel the effects of not taking it. My energy came at times today and then went, just as quick as it came. I was able to get up and around though, moreso than over the weekend. I washed a few dishes, got the mail, did some laundry, and even chased down a UPS driver for a package. (They always try to get away so fast when they think no one is home to sign for it!) Next time I think I'm just going to let Maya out and let her chase him/her down. We all know how much dogs like delivery drivers. I swear, dogs can smell that truck coming before they even hear it.

My neuropathy (numbness/tingliness) has returned kind of fierce today too. My guess is that its from the hit of chemo I had in my spine yesterday. It's making it hard for me to keep typing, so this post will be a little short.

Since I'm not receiving as much chemo this week and next week, I expect to start feeling a little better too. At least I hope. And I need to start gaining weight. I did eat quite a bit today too. Although I had two milkshakes that upset my stomach pretty bad...so I'm not sure how much of those I'm going to continue drinking. For those that don't know, I'm lactose intolerant, so dairy products never agree with me without taking a pill beforehand. And since my stomach is already off from the chemo, it's even worse trying to keep it stable with milkshakes. (I already drink Lactaid milk and used that with the shakes.) I might have to search for a suitable replacement.

Day 32: Chicago Day

2009-02-23T13:03:00.002-05:00

After a long morning and drive to Chicago, we've made it home once again. We arrived there around 7am and almost immediately the tests started. First, I had to have some blood drawn to find out where those counts were. My hemoglobin had risen up to 9.2, up from 8.4 on Friday, so they didn't feel that I needed a blood transfusion. So that was good news. Then, I had to do another bone marrow biopsy. This time it was a little more painful than the last one. I guess it must just depend on how much they need to dig around in there. After the biopsy, I had to do the lumbar puncture (spinal tap with chemo.) Which, wasn't as bad as the biopsy, but still very uncomfortable. Once that was over, I just had to lay still for an hour in a bed so I wouldn't develop any worse side effects. Then, we packed it in and headed home.

Overall the day hasn't been too bad. I still feel very fatigued, but not as bad as I was over the weekend. Today is my first day without Predisone and so far, I'm slowly feeling a little more normal. In addition to that, I was cleared to stop taking several other meds as well, so hopefully this will help stabilize my body a little bit more, and I'll start to feel even more like normal. Time will tell. They did tell me that this would be an 'adjustment' week for me as far as how I'll feel. I won't be taking as many drugs, so my body is going to have to do some fighting of its own. Which, I think is a good thing. Bring it on. I'm ready. I weighed around 155 pounds this morning. Which is way down from where I was a few months ago. Back in November, I weighed 193, so I have some eating to do. My wife and company are helping me find foods that are heavy in protein to help rebuild my muscles and body fat. I just need to keep eating!

My next appointment will be in Chicago with my doctor on March 4th. So far, that appointment involves no treatment and as far as we know is just going to be a discussion of my progress. We won't know the results from the tests today until later in the week, but hopefully my bone marrow biopsy will show that my Leukemia is in remission!

Day 31: A Better Day

2009-02-22T05:16:00.003-05:00

Yesterday was probably the hardest day I've ever had to face since this all started. I felt the ill effects of the Benedryl and Ambien working against me all day. I could hardly walk to the bathroom. I felt extremely groggy and fatiqued. My appetite wasn't affected fortunately, as I did keep eating pretty good throughout the day. I'm sure some of that was the Predisone helping, but either way, I knew I had to eat to get my energy levels back to a liveable level. There were times I would be laying on the couch and I couldn't even lift my head, I was so tired. I didn't nap at all during the day for fear of not being able to sleep last night. Instead of the Benedryl, I just took my regular dose of Ambien and went to sleep. I slept from about 11pm to 5am. I'm awake now, but I don't feel as weak as I did yesterday thankfully. Hopefully, my strength will continue to return as the hours go by today.

I'd also like to thank Darlene for all the wonderful things she's made in the last few weeks for me. The cupcakes were my favorite and are now gone, and the cookies have been wonderful too. Thank you very much for those! Sweet things typically aren't tasting good right now, but those cupcakes went down so good!

Today is my last day on my evil nemesis drug, Predisone. They're telling me that once I stop taking it, my body will likely crash a day or two later, but that is normal and it's time for my body to start working for itself again. I'm not looking forward to that, but I am looking forward to just being off of the drug itself, and feeling a little more normal and not so emotional all the time. It'll be nice not to have the urge to cry all the time! Damn drug has made me crazy! But all that ends today!

Tomorrow, we venture back to Chicago for my big day. We have to be there early around 7am...ack. I'll be getting a bone marrow biopsy to see if my treatment has sent my Leukemia into remission, and that new, cancer free cells have started to grow on their own. I'll probably be getting a blood transfusion as well, depending on what the labs say for my blood levels. And lastly, they'll be doing a spinal tap with chemo as well, but we believe that is all. We don't think (according to my schedule of stuff) that I'll be getting the regular 'Monday regimen of chemo'....just the spinal tap only. But we will see tomorrow. Unfortunatley, the results from the bone marrow biopsy (the one test we're the most interested in) won't be in for a few days afterward, as it takes 2-3 days to determine the results. We have to keep in mind that the last biopsy I had showed no Leukemia cells, which was great news, so there shouldn't be any reason why the new biopsy should say anything different. We're just hoping that new, cancer-free cell growth has started where the Leukemia was. If that's the outcome this week, I'll be able to say my cancer is in remission, and that's big.

Day 30: A Little Anxiety

2009-02-21T07:03:00.004-05:00

My doctor's appointment yesterday went okay for the most part. My blood counts were at the levels expected, save for my hemoglobins, which were down to 8.4. (Below 8.0 they go for a blood transfusion.) Dr. Park conferred with my doctor in Chicago while we were there about it, and they both concluded I would need another transfusion, but it didn't have to take place until Monday, probably. I'm almost wishing I would've went ahead and done the transfusion yesterday, because of the way I'm feeling. I have no energy at all right now. Even talking just doesn't feel right. But I've been eating healthier trying to combat it. Last night I took a Benedryl with my Ambien and that really seemed to help me get some sleep. I still woke up every few hours, but I was able to drift back to sleep before getting up about 6:30 this morning.

I've been getting this knot in my stomach off and on too. It's like if I start to worry too much about how I'm feeling at the moment, I get scared at the thought of re-hospitalization. Especially with my hemoglobins down that low. So, I think the knot is just anxiety trying to build and I've got to keep it under control, before it consumes me. It's like an intense wave of pressure in your mind, begging you to call the emergency line for your doctor to see what he says, and worrying what that might be. But I have to remember, if they thought my situation was at any time compromised, where I would need to be admitted, they would've already done that, and not sent me home. It's a hard feeling to shake, nonetheless.

As promised...I posted a picture with my new glasses.

Only one more day to go with Predisone!

Sleep Deprived for Days

2009-02-20T03:06:00.003-05:00

Ever since I've started the fierce drug regimen they have me on, my sleep has been dramatically affected. The Predisone (the steroid), is one of the drugs I have to keep taking until Sunday, and then I can stop. It supposed to combat the effects of chemotherapy by increasing your appetite and energy levels. Well, that part of the drug works just fine! Too fine actually. Initially, the doctors told me to take the Predisone with breakfast and then at dinner. The problem however with taking it so late in the day again, is that it's like being on speed or something. So you can't fall asleep, much less stay asleep. After a few days of that, I went to the doctors asking what I could do. They gave me two things to try: 1) Take Ambien CR; 2) Move the 2nd dose of Predisone to lunchtime or earlier in the day.

Okie-dokey.

Seemed easy enough. By the time the 2nd dose of Predisone is wearing off, I'll be getting ready for bed, and with a sleep-aid pill, I'll be counting sheep before I know it.

Did it work? Nope! Otherwise, I wouldn't be typing in my blog at 3:16 in the frakking morning. Adjusting the Predisone dose has helped, and taking Ambien CR has helped, but I'm no where close to what a person would call getting a good night sleep. (Yes, they have me on Ambien's maximum dose at 12.5mg per day.)

Lately I get tired around 10pm or a little after, take my Ambien, but it only keeps me asleep till roughly 3am...sometimes not even that long. Earlier, I went rummaging through our drug stash here at home looking for some Benedryl, but found nothing.

I have a doctor's appointment with Dr. Park coming up at 9am, and I'm going to bring this issue up again. What's even weirder, is that during this time of night is when I feel the most 'normal'. All my drugs have done their duty throughout the day and their effects have dimmed, or slowed, waiting for the next dose. And I sit here with sleep beyond my grasp.

Grr.

/Rant off.

Day 28: New Glasses and Burger King is Still Good

2009-02-19T14:54:00.004-05:00

By 7am this morning, I was already shin deep in snow, trying to dig out my truck. It was tiring, but invigorating at the same time. I could shovel snow. My wife thought I was nuts, but hey, I got her to work safely, just the same.

My glasses came in today too, so I went and picked those up. Along the way, I decided to stop for a treat. I used to love the taste of the Burger King chicken sandwich. And low and behold, I still do! And, I even ate their fries. I was so thankful that I could eat it. I'll have to add that one to my small, but growing list of foods I can still eat. Picking up my glasses and being able to eat that sandwich made my day. I also got to see Donna and Chuck today, so that was very cool as well.

My puppy Maya had a vet appointment this evening to get more of her vaccines. So after picking up Katie from work, I took her over there. She's 27.2 pounds now! Maya has tripled in weight since December. She's growing so fast. She's an everyone's dog. Any time she meets someone new, it's like she's known them her whole life and she embraces all the attention with swift welcome.

Day 27: Normalcy Gradually

2009-02-18T18:38:00.003-05:00

Today was a good day in that, today was the first day I spent all alone for the first time, and I actually drove my truck for the first time in nearly 2 months. I felt almost human! The doctors on Monday finally gave me clearance to drive on the days I'm not receiving chemotherapy. So that was a nice bonus to all that's been going on. Ask anyone who knows me...I'm typically a pretty self-sufficient dude. So having to depend on people is not really in my nature. I actually loathe it. (It's one of the reasons I have a truck...so I don't have to borrow one!) I don't mind lending her out though, don't get me wrong. But having to depend on people is something I've had to get used to. My wife has been helpful with everything, and I can't thank her enough for it. But getting a small sense of normalcy gradually spun back into my life, like driving, has lifted my spirits considerably.

I'll be honest here too, I'm still struggling with smoking cigarettes. I know...I know...you don't have to tell me. Katie tells me 'you've already got one cancer...you don't need another one!' And she couldn't be more right, and I'm not debating it. But it's one of the few things I can do that gives me a sense of my well-being back. I haven't given up on quitting though...I'm promise. And I've only had a few cigarettes each day...it's not like I'm a winter chimney or anything.

Hopefully tomorrow or Friday my new glasses will be in and I can pick those up. I ordered a new pair of glasses because the ones I currently wear are cumbersome and uncomfortable. I'm so used to wearing contacts, that I hardly wore my glasses at all. While I'm undergoing treatment with chemotherapy, I'm not allowed to wear my contacts, for fear of damage to my eyes or infection. So, hopefully my new ones will be in soon, and I'll be much more comfortable!

More later.

Day 26: After Chemo Monday

2009-02-17T21:03:00.005-05:00

The optimism from yesterday's news still lingers on today of course. People have commented here and on my Facebook site sharing their positive reactions to the news. And I thank everyone for that.

I would also like to extend thanks to Angie Wotring for starting up the other blog and for her efforts. Thank you very much Angie!

In the meantime, it's keeping myself busy that weighs on my mind throughout the days. I'm not bored at all, but more like futsy. I do have a few plastic models I'm buliding, and movies galore to watch. Anyone have any good Blu-ray suggestions? I've seen The Dark Knight, Iron Man, The Incredible Hulk, both Narnia's, Wall-E, 300 and the list goes on. I'm still looking for more.

Today I felt really weak in the legs for some reason. My upper body seemed to retain it's strength, but my legs felt like they were just along for the ride. It feels like there is 10 additional pounds on both of them and it can be hard to walk them around. It's difficult to describe really, but it's true. They just feel so heavy. The neuropathy (shaking-numbness) is still there too, mostly in my feet today, and not so much in my hands. I'm hoping my legs return to normal tomorrow after a good night's rest.

More later.

Day 25: On the Right Track

2009-02-16T21:12:00.000-05:00

Today's treatment went as expected - Jon is exhausted and not feeling very good, but doing ok. The best part of the day was when we finally heard the results from last week's bone marrow biopsy. And the results are...

No leukemia cells to be found! YAY!

That's part one of getting into remission. So what we're hoping for from next week's bone marrow biopsy is that there are still no leukemia cells to be found AND that healthy cells are growing back in place of the leukemia. Right now, his bone marrow is essentially really empty - lots of the good and bad cells are dead, so we want to see healthy cells growing back in place.

We couldn't have asked for better news! That tells us that he's on the right track, that things are going as expected, and it's one of the first signs to indicate that Jonathon will hopefully NOT need a bone marrow transplant.

So tonight is definitely reason for another Snoopy dance. :)

Day 24: Numbness and Foods

2009-02-15T18:42:00.003-05:00

Peripheral Neuropathy. This is a term I'd never heard of until I started chemotherapy. It's basically a tingling-numbing sensation in my extremities. My hands feel like they're falling asleep, and at times it feels like my legs and feet are numb. Not a good feeling. It makes it difficult to tell if my feet are cold sometimes. There are times when my hands start shaking pretty bad...but so far I'm dealing with it. This was something they warned me about beforehand, so at least the feeling is expected, and not a shock.

Tomorrow (Monday), we're off to Chicago for another round of chemotherapy in the afternoon, followed by a complete physical. Ought to be a hoot.

I'm still being very cautious about foods. Over the weekend, Katie made a cheeseburger/macaroni casserole, and it tasted good. For those that don't know, I've had to completely re-learn what I like, or don't like in foods. Everything tastes different because of the treatment I'm going through. I used to be able to eat just about anything, but now, unfortunately, just about anything can make me nauseous. I have found that anything that has tomatoes in it is bad news. And that really sucks coming from a dude who loves spaghetti, and who used to be able to eat a tomato like an apple. Chicken and some veggies seem to go down good, while some other meats don't. Even steak doesn't taste good! It's terrible. My mother has been extremely generous with her cooking and is always bringing me new food weekly to try. Hopefully in the next few weeks, they can cut back some on the treatment, and my normal taste will return. One can only hope.

Day 23: More Chicago Pictures

2009-02-14T15:28:00.010-05:00

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

2009-02-13T18:25:00.005-05:00

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

2009-02-12T20:32:00.003-05:00

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

2009-02-11T12:41:00.005-05:00

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.