Tuesday, January 25, 2011

Cheap Medicine: Survey Says...

The most recent survey on women showed that 10 percent of the men interviewed liked women with thin legs. Another 15% preferred muscular legs. The rest liked something in-between.

Monday, January 24, 2011

AML:
Big Week, Big Numbers!

A nice surprise today. I had a big jump in my blood count numbers. My white cells almost doubled since yesterday. Platelets are almost back to the "normal" range. With my ANC almost to 1000, I should get out of here.

I am guessing that they'll stop antibiotics this afternoon and keep me another night.

Wednesday is our 9th wedding anniversary and I am excited that I may be out of here to celebrate it with Andrea.

We're planning a family road trip to the Twin Cities for the middle of Feb. I think my parents are joining us. Getting away with the family is important for me to recharge a bit before my next treatment.

Counts:
1/22: WBC:0.7 HGB: 9.7 PLT: 45,000 ANC: 77
1/23: WBC:1.5 HGB: 9.2 PLT: 81,000 ANC:240
1/24: WBC:2.6 HGB: 9.7 PLT:141,000 ANC:988

White Blood Cells (WBC), Hemoglobin(HGB), Platelets(PLT), Absolute Neutrophyl Count(ANC)

Saturday, January 22, 2011

AML:
CT Scan Results....Counts Movin on Up

Early today I had a CT scan of my abdomen. Preliminary results are back already. All lesions on my on liver are gone. They see nothing else wrong. I haven't had a reaction to the CT dye yet, but it's a bit early to tell.

Best news: Numbers are climbing. Platelets recover the fastest and they are coming up nicely. My white counts have jumped nicely too.

No fevers today (helped by my rising white counts). I am probably done with transfusions. When my ANC hits 500 they stop the antibiotics and if the fevers do not come back, I go home.

Counts:
1/21: WBC:0.5 HGB: 9.1 PLT:32,000 ANC: 5
1/22: WBC:0.7 HGB: 9.7 PLT:45,000 ANC:77

White Blood Cells (WBC), Hemoglobin(HGB), Platelets(PLT), Absolute Neutrophyl Count(ANC)

Friday, January 21, 2011

AML:
Getting my CAT Scanned

I get visits from an infectious disease doctor. These are the doctors that diagnosed my aspergillus my first time through. They make sure we have identified the infections correctly and are treating it the right way.

A short visit is a good sign. It means that things are progressing as they should. When something isn’t quite right, I get tests…

I have suspected that my aspergillus infection may not have been completely cured. I have developed an allergy to the contrast dye they give you when having a CT (CAT) scan. So at my last scan, they did it without. This means they could not clearly see things in my abdomen. Since the infection was affecting my liver, I was unclear how they were able to tell the infection was gone. I raised this concern with the infectious disease doctor Friday since I am still running fevers.

He evidently thought the idea had merit. I am scheduled (8am Sat) to get a CT Scan of my chest and abdomen. In order to try to avoid an allergic reaction, I have been put on steroids (Prednisone) and will get a shot of Benadryl before the CT Scan.

They will also see if they notice any problems with my gastrointestinal tract which I am told is the most likely source of the e Coli infection.

If I have a reaction, and it is like the last time, I’ll turn bright red like a sunburn and itch all over. It’s not a life threatening reaction, but it makes me very uncomfortable.

I’ll update you more tomorrow…

AML:
I got a fever, and the only prescription is...

I had four great days at home. I felt good the whole time and with Andrea still on maternity leave, we had some quality time together.

Unfortunately I started running a fever about 1:30 am on Tuesday morning. I drove myself to the emergency room and was readmitted to Sanford hospital.

Once admitted, they started looking for the source of the infection. Basically, they took blood cultures and we would have to wait a few days for the results. In the meantime, they started pumping me full of antibiotics and antifungals to start treating whatever the infection might be. They could tell the first day that my blood tested positive for something called a “gram negative rod” bacteria.


I started feeling a bit better after being treated a day or so. It turns out as the blood cultures matured; I had an e Coli infection in my blood stream. They suspected the PICC line was the source of the infection. So my PICC was removed.

Removing a PICC line is something interesting to witness. It’s done bedside and basically the nurse just pulls it out. My PICC was 50cm (19 inches). It ran inside my basilic vein (I think) from just above my right elbow to above my heart. So… picture a nurse steadily pulling this long plastic tube out of my arm. It is a funny feeling, but strangely there is hardly any blood.


Since being back in the hospital, I have received platelets twice and hemoglobin once. They thought I was haveing a reaction during my 2nd unit of hemoglobin, so they stopped halfway through.

I still need fluids, meds and maybe more transfusions. With my PICC line gone I now have a single IV line in my left arm. They also cut back on the antibiotics now that they know what the infection is.

My fevers have been coming and going since being back in the hospital. Headaches have been frequent as well. The antibiotics are holding the infection off, but the best thing is for my white blood counts to start recovering so I can take care of the infection myself. Tylenol manages the fevers and I get morphine if the headaches get a little strong. Appetite is getting better as well.


I definitely don’t regret my decision to go home for those few days. I probably would have had the infection regardless. Having that break in the middle of the long hospital stay made this go around go by so much faster.

Monday, January 17, 2011

AML:
PICC Line & Glad Press'n Seal

I thought I'd offer this one up incase someone else is going through something similar.

I am in the middle of my chemo for my AML. As a result, I have a PICC line in my arm so we can do daily blood work, meds and transfusions if needed.

We have to keep the PICC dressing dry when I shower. In the hospital we wrap it with a plastic bag and wrap it in tape. I didn't have anything similar at home. Andrea came up with the idea of using Press 'n Seal.

I love that stuff for everything you can use it for in the kitchen. Turns out it is perfect water proof wrap for my PICC line. It sticks to itself so well that I can wrap it tightly around my arm, but it does not stick to my skin. Works great. It even has some give to it so I can bend my arm a bit (the wrap goes around my elbow to compeltely cover the dressing and lines)

Friday, January 14, 2011

AML:
Waiting for Nadir... @ Home

It's so nice to be at home rather then waiting this out in the hospital. Everything is going fine so far.


I have to do daily blood work to see if I need blood or platelets. During the weekend I go to the outpatient area of Sanford hospital at 7:00 am. During the week, I will go to my Dr's office. I still have my PICC line in my arm, so I don't need to be stuck by needles all the time.

I will get blood if my hemoglobin falls below 8. (today it is 11.9 and has not really fallen at all since the chemo). I will get platelets if they fall below 10,000. (today they are 22,000). If I run a fever of 100.4 I have to go back to be readmitted to the hospital.

I have not needed any transfusions this weekend. It looks like my platelets may be low enough that I would need them tomorrow. My hemoglobin is actually higher then when I had my chemo. If I can avoid getting hemoglobin this go around, I'll be happy. It takes several hours to get hemoglobin. Platelets are much faster.

I expect that my counts will hit bottom towards the middle of this week (10 days after my chemo). I am not on any meds right now. I feel good with a healthy appetite.

With my white counts so low, we are avoiding visitors at home and I am being extra careful around my wife and kids. We're adjusting so far.

All is going fine on the home front.



Thursday, January 13, 2011

AML:
Home Sweet Home

Recommended soundtrack for this post: Motley Crue's Home Sweet Home.

So... I am going to give it a try and wait out my nadir and recovery at home. I am still nervous about it, but every nurse I ask for their opinion all said the same thing... "you can get sick in the hospital too, go home."

Should this go well, it will mean something significant for the rest of my treatments. The prospect of spending only a week in the hospital at a time is much more appealing then spending 3 weeks.

Tonight, tonight... I'm on my way, I'm on my way, Home sweet home...

Medicine for the Soul:
Favorite Burrito

I figured I'd post now and then about the places I like to eat... I'll start local first.

I love Mexican food. At least as close as we can get in South Dakota. In Sioux Falls, Inca and Puerta Vallarta are safe bets. In Brookings, Guadalajara's is great.

However, my single favorite mexican dish in Sioux Falls is the Pork Fajita Burrito @ Casa Del Rey. I have a weakness for chile-verde and the pork loin\verde\peppers combination has everything I love in mexican food. Since the place is bit off the beaten path, it's generally not all that busy. For Andrea & I, Casa del Rey is our go to Mexican place in SF (I hate crowds & waiting for food).

Anyone care to suggest a better mexican dish in SF? I'll put my best effort forward to sample them all.

Incidentally, if you are passing through Brookings & are craving burritos or a quesadilla, stop at the BP station right off the interstate and try Taco Express. Admittedly these are as far from authentic mexican, but the portions are big and the food is mighty tasty. It's my favorite place to grab lunch in Brookings. I recommend the shredded beef; then load up with beans, rice, veggies and don't forget to ask for the chipotle ranch sauce... have them grill it of course.

"To eat is a necessity, but to eat intelligently is an art." - some old french dude.

Cheap Medicine:
Take Off My Clothes

My wife came home the other night and told me to take off her blouse.

Then she told me to take off her skirt.

Then she told me not to wear her clothes anymore.

Wednesday, January 12, 2011

AML:
Should I Stay or Should I go...

I suggest reading this post with the Clash's "Should I Stay or Should I Go" playing in the background.

Background: My chemo ended 3 days ago (Sunday) and I have had no side effects from it. My numbers are falling as they should (albeit slowly). I am waiting for my blood counts to bottom and then recover... just waiting.

I was presented with an interesting option today. My case manager commented on how well I was doing. She suggested that we see if I can go home and wait things out there. Andrea was with me at the time. Neither of us had even entertained the thought.

So we spent all afternoon excited by the prospect. When my doctor came to do his rounds (he generally comes about 5:30pm) he didn't really direct me one way or another. Said it was up to me. We talked for a bit and as he left, he said we'll see if we can get you out of here tomorrow.

So here I am... I was excited all day about the chance that I might get out, but now I am extremely nervous at the thought. I am most comfortable at home but I feel the safest here. I'm guessing that I've got about 2 weeks left for my numbers to bottom and recover. This is the time I am most susceptible to infection. So... should I stay or should I go?

I have not made up my mind yet. I understand that my case manager is mainly focused at keeping the hospital bills in check, but I know her (her daughter & my wife are friends) so I trust that she is not suggesting something that would put me at risk. I've asked a couple of nurses here, they are encouraging me to head home if I have the option. They suggested patients generally do better at home. Both the case manager and nurses have said, if you're going to get sick, you're going to get sick and we'll deal with it then.

I am literally 10 min from the hospital when @ home. If I run a fever I know I need to come back ASAP. They will check me back in and give me antibiotics. I'll need to have blood work done each day to know when I need to receive blood or platelets. All this can be done on a outpatient basis. Still, I am nervous.

At home I have four kids coming and going from school and daycare. All have had flu shots. Other than some runny noses, everyone is healthy. So... should I stay or should I go?

For now, I am going to sleep on it.

Don't miss tomorrow's episode for the exciting conclusion...

Medicine for the Soul:
Oven Roasted Beef Brisket

I love cooking a brisket, especially for a large group. Great favor and relatively cheap. I have smoked them in the past, but it's usually more work then I prefer. I have good luck roasting them in the oven. Here is how I do it.

Again, I usually cook for a large group so I end up getting about a 12-14 pound whole beef brisket from Sam's Club.

Prepping the Brisket:
Trim the thickest of the fat from the meat. You don't want to remove all the fat cap, but you don't want 1/2 inch thick chunks of fat to deal with after cooking.

A whole brisket has 2 muscles: the point & the flat. The flat is the thinner part that runs the length of a whole brisket. I prefer to separate these two pieces of meat to make the cooking time a bit more even. You have to separate them after cooking anyway since the grain of the 2 muscles run in different directions. The point lays on top of the flat. Lay the whole brisket fat side up and it should be pretty obvious where to start separating the muscles. Look at the thick end. You can usually start separating by hand then cut the connective tissue as you go.

If you are not comfortable cutting them apart, cook the brisket whole until the flat gets to the right temp. Then separate the point from the flat (it will be easy). Return the point to the oven and cook until finished.

The Rub:
I've had briskets with peppery rubs on them. I like them that way, but many I cook for don't. Plus since I am doing this in the oven, I'm a little careful of adding too much salt or spicy rubs that would work better if I was smoking the brisket. If I want spice, I get it from the BBQ sauce added at the end. That way everyone gets the level of heat they want.

The all purpose rub I use for beef, pork & chicken is Emeril's Essence. I get mine pre-made in the seasonings section at Sam's Club. Or use his recipe (from foodnetwork.com):

Emeril's Essence - Ingredients:
2 1/2 tablespoons paprika
2 tablespoons salt
2 tablespoons garlic powder
1 tablespoon black pepper
1 tablespoon onion powder
1 tablespoon cayenne pepper
1 tablespoon dried oregano
1 tablespoon dried thyme

Add a liberal amount of the rub to all sides of the brisket. It's a lot of meat, so don't be stingy. on the rub. Like it a bit sweeter rub, add a bit of brown sugar to the Essence.

Roasting the Brisket:

Set oven to 350.

Place the brisket in a roasting pan, fatty side up. I usually place a rack under mine to get the meat off the bottom of the pan, but it's probably not a big deal.

Cook uncovered for an hour.

Add 1 1/2 cups of beef stock and enough water to fill the bottom of the roasting pan about 1/2 an inch. Lower oven temp to 300. Cover the pan tightly with foil and roast for about 2 1/2 hours. Start checking the internal temp of the meat. Pull the brisket out when it reaches an internal temp of 185 degrees. Let it rest for 15- 20 min. Keep in mind the flat and point may not get done at the same time. Total cooking time will be around 3.5 to 4 hours.

Cutting the Brisket:

After all this cooking, you want tender meat. The connective tissue should be broken down, but it's just as important to cut the brisket the right way. Cut across the grain of the meat as thinly as you can... around 1/4 of an inch (not thicker). This will be much easier on the brisket flat. With the point, you can give it a shot, but you will find it will likely pull apart. No big deal, it makes great shredded beef sandwiches. Or chop it up and add to some baked beans.



Preparing the Day Before:

Frankly, I prefer to prepare the brisket the day ahead of time, it makes the timing so much easier should your meat take longer or less time then expected.

After cooking, I refrigerate the flat and point in foil (uncut). Keep a generous amount of the juices from the roasting pan (refrigerate the juices seperatly).

Then to serve, remove the meat from the refrigerator, it will be easier to cut nice and thin (even the point). Place the slices, in a crock pot. Return any extra meat to the refrigerator (leftovers).

Remove the fat from the top of the juices and add a good bit of the roasting juices to the crock pot. You don't need to cover all the meat. It will take an hour or so to reheat. If you want to speed this up. Reheat the juices on the stove, then add to the crockpot with the meat. Flip the meat right before serving so all the meat has been in the juices. This also works well should you overcook the brisket a bit. The juices add a ton of flavor and can restore a bit of moisture should it get a little dry for your tastes.

Serve with BBQ sauce, as brisket sandwiches (plain old white bread works for me) or just as the meat with plenty of good sides.

Most importantly...Enjoy with family and friends.


Cheap Medicine:
Rick's Anniversary

Rick was in trouble. He forgot his wedding anniversary. His wife was really angry.

She told him "Tomorrow morning, I expect to find a gift in the driveway that goes from 0 to 200 in less than 6 seconds AND IT BETTER BE THERE!!"

The next morning Rick got up early and left for work. When his wife woke up she looked out the window and sure enough there was a box, gift-wrapped in the middle of the driveway.

Confused, the wife put on her robe and ran out to the driveway, and brought the box back in the house.

She opened it and found a brand new bathroom scale. (Rick has been missing since Friday. Please pray for him.)

Tuesday, January 11, 2011

AML:
Waiting for Nadir...

I've said that this chemo is a waiting game. In my case, as long as I can avoid infections when my blood counts are low, this trip through should be pretty uneventful. So right now I find myself waiting for nadir...

Nadir means the lowest point. In relation to my chemotherapy, it's the term given to the point at which my blood counts hit their lowest point. It generally should happen at about 10 days after my chemo (give or take).

So what is happening in my body right now? The chemotherapy drugs are going after my rapidly dividing cells. Since cancer itself is rapidly dividing, the point of the chemo is to kill every last cancer cell in my body. Other (healthy) rapidly dividing cells are getting caught in the crossfire like hair, skin, and digestive cells. Since I am dealing with Leukemia (cancer of the blood and bones), we're also talking about white blood cells, red blood cells and platelets.

While, I can live with out hair, I can't live without white blood cells, red blood cells or platelets. So nadir is a very important thing. As I get closer to nadir, my body is still unable to produce these cells. I lose the ability to fight infection (white blood cells), carry oxygen through my body (red blood cells) and for my blood to clot (platelets). If needed, I receive blood or platelets to get me through this period until my body starts producing these cells again.

My next milestone is nadir, which should be sometime in the middle of next week, until then... we wait and deal with whatever side effects may come up.

Monday, January 10, 2011

To My Wife...

As I settle in my hospital bed for what is becoming yet another in a string of lonely nights, my mind wanders to those I love. I am starting to believe that when we are separated from those we love, we are being provided the opportunity to see them in a new way.

With so much time to myself, I think back on 32 years and recall moments that have made me into the person I am. Even as the memories fade, these moments stand out. I find myself focusing on one moment more than any other; January 26th, 2002, when I married Andrea Frericks.

I met Andrea is college and for some inexplicable reason, she managed to put up with the selfish, self absorbed, stubborn, (fill in the blanks) person that I was. To this day I have no idea why. Especially as we go through this illness together, I am unsure how I managed to be so fortunate. My dad likes to remind me how lucky I am. Marrying up is something we have in common.

I mentioned marrying Andrea as a moment, but it wasn’t like flipping a switch. We were both young with plenty of growing up to do, but we’ve spent these 9 years since growing together. In so many ways, we are a perfect match, in so many ways we are not; but for all my shortcomings she has held on tightly… more for my good, than her’s.

She is so much stronger than she thinks she is.

I hope I’ve made her laugh more than cry. I hope I give her strength, because she is mine. I’ve taken her for granted; she takes me for who I am.

So, here I am with this opportunity. To my wife: I want to grow into one of those old couples, so into each other that we embarrass everyone else around us. I am not sure if we will be provided the time to grow old together, but at least we can try to embarrass everyone else. Sound like a plan?

There was a point not that long ago, that I would have felt too self-conscious to share such personal thoughts. One’s point of view changes when dealing with something like AML. If course priorities change, but I find myself more emotionally connected to what is going on around me. May I never again miss an opportunity to tell those around me how important they are. Why is it that we are often forced to realize these things?

Perhaps I am destined to emerge from this with some kind of strong insight about who I am and what I want…perhaps not. I have faith this is all playing out as it should. Whether our tests are illness, injury, relationships or our own stupidity, at least life is not a long boring road to nowhere.

AML:
A Day in the Life...My Treatment

Some days are busier then then most. But for the most part, once the chemo is over, there is a lot of time just waiting for my immune system fall, then to recover enough so it is safe for me to go home. At the end of each treatment, I get bone a marrow biopsy to see if Leukemia is detected.

All IV meds and fluids are administered through my
PICC line. I had a Hickman Line first, but since it got infected, we've stuck with the PICC line. The PICC line gets removed each time I go home.

5:30 am:

Daily blood work. (some nurses let me sleep until 7:00)

7:30 am:

Order breakfast. The food is pretty good here.

After breakfast my blood tests are back. I have them written on a white board in my room so I can can track as they go down and then back up. We monitor white blood count (WBC), Hemoglobin\Red Blood Count (RBC), Platelets and ANC. ANC is your ability to fight infections on your own. When ANC falls below 500, your immune system is considered compromised. In general, about 7 days after the chemo my ANC falls to 0 and stays there for about a week. A dangerous time to get infections.

Morning (Chemo):

Prepping for chemo. Premeds 30 min before chemo: Decadron 50ml (Steroid), Anti-nausea meds. I have had no issues with nausea since the first round of treatments.

Chemo: When I was going through Induction therapy (first 2 rounds), my chemo consisted of an injection of Daunorubicin (216mg) each morning for 3 days. At the same time, I was given a continuous dose of cytarabine over 7 days.

I am now going through consolidation therapy. 7100mg of cytarabine given over 3 hours. I do this 2 times in a day and then no chemo the next day. In effect I am getting chemo every other day for 5 days.


Hemoglobin or Platelet transfusions (when needed):

If my Red blood count falls below 7.5, I get hemoglobin transfusions (2 units).
If my platelets fall below 20,000, I get platelets.

Other Meds\Tests:

I was on a bunch of meds my first time through because I was so sick: Prilosec for heartburn, nutritional supplements to correct potassium and other deficiencies. Mouth wash to prevent mouth infections. All kinds of oral and IV antibiotics. I was also getting CT scans and other tests several times during my first round of chemo in order to identify the source of my infections\fevers. I had a terrible nose bleed that would not stop due to my low platelet levels.. We had to have it cauterized to stop the bleeding. Fortunately I have been able to avoid most of these complications since the first round of chemo.

Constant IV fluids (resulting to frequent trips to the restroom, plus they have to monitor my fluid input and output)

Eye drops (more steroids) every 6 hours to prevent eye infections.

Broad spectrum antibiotics if I spike a fever.

VFEND antifungal to treat the Aspergillus I got during my first treatment (was on this from 10/11-12/21/2010) 2 pills a day @ $50 a pill. The Aspergillus caused nodules on my liver and lungs.


Passing the Time

Technology is my friend. There is only so much TV you can watch. Sanford has wireless Internet which provides a bunch of options. I get a lot of comments from the staff about my setup. I occupy my time with:

  • Eating: I can pretty much order food and snacks when I want. Favorites: grilled salmon, Lasagna, Pork Tenderloin. Dessert: mango smoothies, milk shakes, french silk pie, apple pie. A decent variety and pretty good all around. But even good hospital food gets repeditive. I occasionally order a Godfathers pizza, Arby's or Chinease, if I need a bit of the outside life.


  • Emails: For those family & friends not on the Facebook bandwagon


  • Facebook: Posting status updates and monitoring friends


  • Blogging: I started this during my 3rd round and am amazed by how therapeutic and time consuming it is. I've always enjoyed writing. I know others use CaringBridge to do the same thing. I wanted my blog to be more then my AML so didn't go that route.


  • XBOX: Mostly playing XBOX Live with my coworkers. It's been great to be able to keep in touch with them this way. Call of Duty: Black Ops and Rock Band 3 are among may favorites right now.


  • Reading: Cooking topics, Terry Brooks books


  • Amazon Kindle ebooks: I got my wife an Amazon Kindle for Christmas (she loves it). With the Amazon Kindle PC reader app, I can read all the books on my laptop for no extra cost. Luckily we like similar books. Percy Jackson Series, Sookie Stackhouse Journals, I will probably break down and read the Twilight saga as well.


  • Movies: Sanford has Lodgenet's on demand movies. They don;t change often but they are free. The network blocks streaming video, so Andrea brings in DVDs upon request.


  • TV Shows: Chuck, Human Target, Glee, Family Guy, NCIS, NFL

My Room:

It is a special room for people with compromised immune systems. My own air\ventilation. When my ANC falls below 500, I don't venture out much and people wear masks\gowns and scrub up when the come in the room.

Here are a few pics. My laptop\PC\Xbox setup along with my TV, whiteboard and most important...family pics.

Sunday, January 9, 2011

Medicine for the Soul:
Oven Braised Baby-Back Ribs

I love to cook, here is my first post related to cooking.

I made these recently (for New Years Eve) and they turned out awesome. The oven braising method comes from Alton Brown (Food Network), but I tweaked\simplified his recipe. I will make all my ribs like this from now on. In the summer I would finish these on the grill, but in the dead of a South Dakota winter, I finished under the broiler.

The Meat:
First, start with good meaty baby back ribs. I get mine from Sam's Club. Always have had good luck with the meat I get there. I cooked up 8 pounds of ribs. 8 pounds may seem like a lot, but these reheat really well (if you are lucky enough to have any left).

The Rub:
Assuming each slab of ribs is around 2 pounds. Prepare the rub based on the amount of meat you have. For each 2 pound slab:

  • 3 tablespoons of light brown sugar

  • 1/2 tablespoon of kosher salt

  • 1/2 tablespoon of chili powder

  • 1/2 tablespoon of Old Bay seasoning (I love this stuff)

  • 1/4 teaspoon of black pepper

  • 1/4 teaspoon of dried thyme

  • 1/4 teaspoon of onion powder

Apply canola oil (or other vegetable oil) to the meat. Add rub to all sides. Then refrigerate overnight. I actually let mine go for 24 hours. Honestly not sure if it makes a huge difference. I think the extra time lets the sweetness from the sugar get through the meat a bit more.

I imagine any rub would work, but I love the Old Bay in this one. Add cayenne if you want heat, or wait until the last step and just get your heat from your favorite BBQ sauce. I like waiting until the last step since those I cook for like different degrees of heat.

Braising Liquid:
For each 2 pound slab (just increase the liquid a bit if you slabs are bigger).

  • 1/4 cup of beer (I used Bud Light, because I didn't want to beer to overpower)

  • 1/4 cup of Chicken Broth or Stock

  • 1 tablespoon of Worcestershire sauce

  • 1/2 tablespoon honey

  • 1 clove garlic (can use garlic powder if that's what you've got)

The measurements here are not that touchy and the first 2 ingredients are the most important. It's all about slow cooking these ribs in a small about of liquid (braising).

Braising the Ribs:
This is the method I go from Alton Brown. You will cook each slab individually in aluminum foil with the braising liquid.

  • Set oven to 275.

  • Lay slab of ribs on heavy duty foil. Bone side up. This is important so the bones don't poke holes in the bottom of the foil. You're going to pour the braising liquid in the foil packet so no seams in the bottom. Fold the foil loosely over the top of the ribs and crimp tightly (don't want steam to escape). Roll up one of the sides. Make sure you have enough foil so these side seams end up rolled even with the top seam. You want to eventually form a leak\steam proof packet. Take your time, if you poke a hole, start the packet over. Remember to leave one side open. for the next step.

  • Pour braising liquid into the open end of the packet and then seal tightly.

  • Place the slabs in a single layer on a sheet pan(s), in case they leak.

  • Place in oven. After about 2 1/2 hours check one packet. Unroll one of the sides of the packet, stick a fork in the ribs and test the meat. When done...On the meaty side you'll see the meat pull away easily. don't forget to test between the bones, that part may not be done yet. Mine took about 4 hours to cook. Since we are braising, it's unlikely you'll over cook them. You do want the slab to stay together when you take it out of the packet. You only need to check the same packet for doneness; once it's done, they all will be. You could go as far as cutting a rib off your test packet to make sure you are happy with the doneness.

  • Drain the braising liquid. (Poke a hole through the packet and let the liquid drain in the sink)

    Note: If you want to prepare ahead, you could stop right here, cool and refrigerate the ribs overnight (in their foil) and finish the next steps before serving.

Finishing the Ribs:
Now you have tender meat that has good base flavor, the final step of broiling or grilling is the key to getting big flavor from these ribs.

  • Set your oven to broil and set the rack on the 2nd position from the top.

  • Coat the ribs with your favorite BBQ sauce. (I use Famous Dave's Rich and Sassy.)

  • Broil the ribs to caramelize the sauce and even add a little char if you want. Keep tabs on them. You don't to overdo it after all the work to get to this point. I broiled for about 10 minutes, but mine went in the broiler cold from the refrigerator.

I cut the ribs in 2 rib portions and put in a crock pot to keep warm (if prepping a little ahead of time). Otherwise serve immediately.

Enjoy. If you try these, let me know how it goes.

Saturday, January 8, 2011

Layla's 2nd Birthday

Layla turned 2 today. We did a small celebration at the hospital, since I am in the middle of my AML treatment. We'll do a bigger celebration when I get out. With Andrea on maternity leave it's been great that she can get the kids to see me so often and organize things like this.

Kids under 12 are not allowed in my wing, so we have to meet in a family room right outside my area.

We had DQ ice cream cake and brought cake to share with the staff and nurses. So much for post holiday diets (the nurse's, not mine).






Sanford's Sons and Daughters

This post is about the giving nature of my caregivers @ Sanford Hospital.

Having spent almost 2 months in Sanford Hospital prior to Christmas (2010). I have gotten to know my nurses and staff of the 6000 level. They would get to see pictures of my family and occasionally get to see them when the kids came to visit me.

The staff asked if they could adopt our family for Christmas. They sent so many gifts for our kids. It was truly overwhelming. I've included a few pictures. Everything you see under the tree is from the Sanford staff (6000 level).

The highlights where the new outfits, slippers, Zhu Zhu pets and their imagination box full of dress up cloths. I am so grateful of the care and new friends I have made here.



Friday, January 7, 2011

The 2010 Holiday Letter...Never Sent

We ran out of time to mail our holiday letter before leaving for 2 weeks at my parent's. Figured I'd post it here.

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Dear family and friends,

This year was full of adventures for our family. A new baby, cancer and Disney all in one year. (Not in that order).

Lets start with the biggest adventure first. On Labor Day, Jon woke with terrible back and hip pain. Usually one to let things run their course, this was different. We went through a series of different kinds of doctors before a diagnosis. On Sept. 23, Jon learned he had Acute Myeloid Leukemia and immediately started chemo at Sanford Hospital in Sioux Falls.

AML is aggressive and treatment is equally so. Jon has had two chemo treatments. The first was physically hard on him, but after four weeks and losing 40 lbs, he was able to go home. The second treatment put him in the hospital over Thanksgiving, but was easier with the major side effect being boredom. AML is tough cancer to be rid of, but for now, the recent tests have him in remission. More treatments are needed so it does not come back, but it is a blessing that Jon has responded so well.

Andrea still works at Citibank and Jon at Daktronics. With Andrea being on maternity leave and Jon in between treatments, we have really been able to focus on spending time together as a family.

Alivia finished her first year of school at Tri-Valley in May. She is a good student and enjoys it very much. She has straight A's through her first half of 1st grade. Liv started gymnastics this year and quickly moved from the beginners to the advanced class. She is, however, asking to swith to swimming lessons.

Nevaeh and Layla attend Citibank Daycare. The girls love it, as it provide many activities for them. Vaeh loves singing, the tumble bus and bragging to her older sister about her field trips. With Layla we have gone from walking to talking this year. She enjoys her time outside and loves it when Mom and\or Dad join her at school for activities.

Jonah, was born in November. Jon was between hospital stays and was able to be there. Having a boy in a house full of girls is sure to be an adventure of its own, but he has been a very good baby.

You know it been quite a year when Disney falls this low on the list of adventures. Liv and Vaeh saved money for two years to help pay for the trip to Disney World. We were so happy Andrea's mother, Marsha, was able to join us. There are too many memories to fit in this letter, but needless to say, we had a great time.

In a year of memories, one thing stands out. We are truly blessed by all our family and friends that have helped us during Jon's treatment. All the prayers have done wonders and Jon was able to focus on healing knowing his family was taken care of. Our family will forever remember and be thankful for all that was done for us.

Here's looking forward to more adventures, strengthened by what lies behind us,
Jon, Andrea, Alivia, Nevaeh, Layla & Jonah

Thursday, January 6, 2011

AML:
Chemo or Bone Marrow Transplant Decision

This post is regarding my specific treatment plan for my AML. When it comes to AML, there are pretty straightforward options, chemo or bone marrow transplant. This post covers why I am going on with chemo and why others would be on to a marrow transplant by now.

I had a great conversation with Dr. Kelly McCaul from Avera McKennan prior to beginning round 3 of my chemo, he helped lay everything out for me.

First let me put a little disclaimer on the statistics I will use through this post. The median age for AML patients is around 65, the younger a patient is, the better the response. So keep in mind that these statistics include all AML patients. Also, AML is rare, the studies have been quite small and can take years to get collect and process. Often current treatments are well ahead of the studies.

With the chemo regimen we are on, there is a 33% chance that it will eliminate the cancer and that I will be "cured". Cured means that the cancer does not return within 5 years. That leaves a 66% chance that I will relapse within that time. AML typically relapses quickly, within the first year or so, so each year that passes greatly reduces my chances or relapse. For some patients, the chemo doesn't achieve remission. I was in remission after my first treatment, which, along with my age (32), I like to think improves my odds. I also did not have any adverse reactions to the treatments themselves, no rejection of blood or platelet transfusions.

Before I move on to the transplants, I need to provide some background on cytogenetics. Cytogenetics is used as a guideline to predict how likely a specific patient is to relapse. With technology what it is today, doctors can look at the genetic makeup of the leukemia cell itself. There are specific abnormalities that indicate a good, standard or poor prognosis. I, along with half of AML patients fall within the standard risk group. Generally put, this puts my 5 year survival and relapse rate at around 50%. (Remember what I said about stats before)

On to bone marrow transplants...again I need to provide some background before I can tell you why I am not doing a transplant at this time.

A bone marrow transplant is basically a stem cell transplant from the marrow of a healthy donor. Stem cells are basically blank cells which can become any type of cell. In the bone marrow these stem cells become red blood cells, white blood cells, platelets and so on. My leukemia is a result of these stem cells being released as something called "blasts". Essentially they are immature cells that have not become what they are supposed to. Over time, they replace the healthy cell types that I need to live. The A in AML stands for acute, so with AML, it can be fatal in a matter of weeks or a few months if untreated.

With a bone marrow transplant, the intent is that the donor immune system becomes mine and attacks my "foreign" cancer cells. The risk is that this new donor immune system detects my body as also being foreign and attacks it. This is called Graft vs Host disease. Bone marrow transplants are the only transplants where this is a risk. With other types of transplants the scenario is usually the other way around: the host body (immune system) attacks the donor tissue. So that's the the thing with bone marrow transplants, Graft vs Host disease is usually fatal.

The best option is a transplant from a related donor, this usually has to be a sibling. Why a sibling and not a parent or child? Since we get half our genetic makeup from each of our parents, only our siblings will have a chance at the same genetic background. Same with my kids, only half of their genetic traits come from me.

Now, I have to throw a shout out to Mr. Doug Meyer, my high school Biology\Science\Physics teacher. Remember Gregor Mendel's experiments with pea plants, and dominant and recessive traits with that grid of four squares labeled: PP, Pb, Pp, pp..... anyone? Doesn't really, matter. During my conversation with Dr. Kelly, I was able to comprehend and dare I say impress the Doc when I guessed that Jessica (my sister) probably only had a 25% chance of being a bone marrow match to me. Thanks to Mr. Meyer, not only did I get that easy A in college Biology, but much of what has been going on inside of me has been much easier to comprehend.

So why ramble on with all this genetic stuff? It all comes down to assessing the risk of a bone marrow transplant. Had my sister been a match, the likelihood of graft vs host disease or infection resulting in mortality would be around 20%. Getting marrow cells from a non related donor places the mortality risk at about 50%.

So considering my cytogenetics put me in the standard relapse catagory: if my sister was a match, the 20% mortality risk vs the long term prognosis of getting a transplant from a related donor, would have put us on the path of getting a transplant. However, she is not a match. So weighing the 33% chance that the chemo will cure me, vs the 50% mortality risk of a transplant from a non related donor, we are going with a chemo only treatment for now. My age and response to the chemo so far were also considered. Should I relapse, bone marrow transplant will be considered at that time. The way I figure it, the more time we can buy, the more opportunity for advancements in both AML and bone marrow transplants, if needed at all.

There are a few general things that I also want to note related to my diagnosis.

My AML type is M0 (M-zero) indicating that I have minimally differentiated AML. Not sure what that really means, but I have not been told that the prognosis is any different from any other AML. AML itself is rare, roughly 10,000 cases are diagnosed in a year in the US (roughly 1.2 % of cancer cases). Only 2-3 % of AML cases are my type. By my math, there are about 250 cases of my kind of AML diagnosed in the US each year.

My AML exhibited in a couple unusual ways (though not unheard of). Often white blood counts are high, mine were very low. The hip and joint pain and lymph node swelling was a bit unusual as well. Also my initial bone marrow biopsy indicated that the marrow was severely necrotic (i.e the tissue was dead). Though unusual, there is nothing here to indicate that the treatment or prognosis should be any different. In fact my marrow was determined to be healthy after the first round of chemo treatment.

Ever considered being put on the bone marrow donor registry?

AML:
Acute Myeloid Leukemia - Catching up

This post is just to catch up on where we are with my AML diagnosis and treatment.

On Sept 6th, 2010 I woke with terrible low back and hip pain. We had just been to the SD state fair the day before, this could have been just me having overdone it, but I had never experienced pain like this. We were at my parent's farm, a long way from any emergency room.

So I crawled... yes crawled to our van and we booked it to Sioux Falls. Managed to find a Chiropractor that was available. (it was Labor day). Had a couple of treatments, not much improvement. Switch to my normal Chiropractor (Dr. Rick Odland) when he was available. He treated me, but noticed things were not right and referred me to an orthopedist @ Sanford Hospital. Dr. Odland's quick referral probably saved my life.

I had a MRI which detected that the bone marrow in by lower back (spine) was not right. I had blood work done and was then referred to an oncologist @ Sanford. At this time I had a lymph node removed from my neck, leaving a nice scar. (all my lymph nodes were swollen, you should have seen my tonsils) I also had a bone marrow biopsy. OK, not rocket surgery here, I figured out they were looking for looking for cancer. I was expecting something more the lines of an infection.

This all took place from Sept 6 -17th. I had a work Trip to Dallas the 20th-22nd. I was still in significant pain, but went anyway. I was barely walking, sitting was uncomfortable. Even the heavy duty pain killers I had didn't make much difference. I fulfilled my work obligations and we did eventually get the Texas Rangers project. I had some great coworkers (Sarah, Aaron, Mark and Tony) looking out for me.

The next day, Sept 23rd, I had my doctors appointment. I received my AML diagnosis at 9:30am and was in the hospital at 10:30. Evidently my bone marrow sample had been so necrotic that it and the lymph node were sent to the Mayo Clinic to confirm the diagnosis.

At this point I learned that my immune system was so compromised that the doctor told me I was a week or so from dieing from even a minor infection. Here I am flying around on a cramped airplane with no immune system. So began my first round of chemo.

My induction chemo consisted of 3 days of daunorubicin and 7 days of cytarabine treatment. Prior to entering the hospital I had lost 20 pounds. First I had a
Hickman port inserted so the chemo and meds could be administered. After my chemo started kicking in, I started running fevers. I'd get to 103, get a huge dose of Tylenol, my fever would break after about 4 hours and the cycle would start again. I was getting as much Tylenol as they could give in a day. I also had terrible heartburn which eliminated my appetite. this went on for almost 2 weeks.

Lots of broad spectrum antibiotics where given, I now had "Infectious Disease" doctors working on me as well. Come to find out, My Hickman had become infected. I was positive for MRSA as well as Aspergillus (a fungal infection in my lungs and liver). Both are very nasty infections. The MRSA was treated and under control very quickly. I was treated for the Aspergillus for almost 3 months.

Once the docs identified the infections, I the fevers ended. In the mean time, my blood counts started coming back. It was October 10th when my ANC (ability to fight infection) increased from 0 to 8. An ANC of 1500 means you can fight infections on your own, when it climbs back to 500, they let out of the hospital. Was a very emotional day to see progress. Unfortunately my fevers kept me in even as my ANC climbed. The fevers ended friday the 15th. At that time my blood work was almost back to normal. Best news was that my recent bone marrow biopsy indicated complete remission. I was sent home early the following week.

In all I had lost over 40 pounds. I was quite weak going home. But started getting back to myself over about two weeks. Round 2 of chemo would be Nov 9th. It was supposed to be a week earlier, but I got the best cold I ever had. Because of the delay, I was able to be present for my son Jonah's birth.

My notes from round 2 of Chemo will be short. I was in from November 9th to December 3rd. Dr Dirabi (oncologist) decided to run the same induction regimen again. This time I only had one day of fevers. Otherwise I felt good the whole time. Andrea brought Godfather pizza & Chinese for me several times. I missed Thanksgiving with the family, but at least I had the promise I'd be home for Christmas.

Round 3 of Chemo started Jan 5 2011. This time it is consolidation chemo. high doses of cytarabine every other day for 5 days. My body is feeling the higher dose after one day, but I still feel pretty good.

Before I wrap up, just a few notes about the first few months of dealing with this.

I was pretty out of it my first treatment, but at other times I've been able to be online, read and spend a fair amount of time playing Xbox. I tire of TV quickly, but between the food network and foodnetwork.com I planned out some great meals for the holidays.

My family and friends have been amazing. keeping up with the emails, and letters has been a wonderful distraction. My close friends at work made a huge (4 foot high card) out of plywood, a huge Chuck Norris on the front, I will treasure this for a long time. Andrea's Grandma, Lovern, has stayed at the house to help Andrea with the kids. We received so many cards and gifts. The staff and nurses of Sanford 6000 level adopted our family for Christmas. We were so overwhelmed by how much they sent to our kids... I'll probably do a separate post on that.

With so much family in Sioux falls, I think I am on the prayer chain at almost every church here. Our extended family has also made sure to muster up prayers from all over. I am so grateful for this...I believe it makes a huge difference.

I am sure I'll edit this to add more as I think of what I missed.

The final thought I want to include is how amazing my wife Andrea has been through this. I am so lucky to have married up and to have such a wonderful family (mine, hers...ours).

Wednesday, January 5, 2011

New Year, New Blog

I have been meaning to do this for quite some time. I imagine much of what I record here will be fairly mundane, but here's what I am going for.....

I've always wondered about life when my grandparents were growing up, I hope I can start making a record for my 4 kids and eventual grandkids (and so on). Should I get hit by a bus, or perhaps contract some life threatening health condition (I have high cholestorol for example). Perhaps this blog would be a bit of a way for my descendants to get to know me. Jessica (sister) does the family history and pictures thing, but as people look at our family tree the consensus will certainly be that I am the most interesting family member (and tallest --> which probably goes hand in hand)

I have been able to travel to some cool places as well. Germany (Vacation), Hawaii (5yr anniversary), many great cities for work @ Daktronics. I wish I had a better record of some of those places. Truth is I started this blog several times since blogs came into being, but I've had distractions that never let me stick with it. Leukemia has a way of changing perspectives, as well as providing an immense amount of free time.

Since I mentioned it, I also feel the need to have a ongoing log of what I am going through with my Leukemia (AML). Facebook is fine for letting people know what is up, but I hope to create more of a running log of the events. I pray that myself or someone I know never have to go through this again. I wish I could reference some of my experience from my prior 2 treatments.

Cooking\Food has been something I have enjoyed, which is obvious considering my expanding waist line. Love of food can also be attributed to genetics. You'll see some things like that from time to time. In fact, I remember most of the places I visit by the food there. I've recently fried up some killer donuts and made probably the best rack of baby back ribs I have ever had, and yes I have had ribs in KC (You'll find I don't mind patting myself on the back).

This whole thing has been inspired by a coworker and friend (Bo) to finally get this done. Bo recently quit his job at Dak and is making plans to sail around the world (sailingbo.com). It's on his bucket list. Creating a bucket list for me at this point seems to be tempting the fates, so I'll hold off a bit on that one. I like hearing how others go about life, and I get a kick out of the things he posts.

I'll wrap it up for now... What's the #1 thing on your bucket list...ok, what are you waiting for?