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.

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.

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.

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.

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