Scratching the Itch

Long Chicken

You know you want me.

Just a quick update for everyone:

It’s been a good week.  Since my release from the hospital on Friday, I’ve felt progressively stronger each day.  My latest labs (drawn this morning) are looking good, as I’m within the normal range on the majority of key categories in my blood panel–red and white cell count, platelets, absolute neutrophils, etc.  My liver enzymes are elevated (likely as a result of the most recent round of treatment) but have been steadily trending downward.  I’m confident we’ll be back to normal by my next scheduled blood-draw on Monday. If that is indeed the case, and all of my other numbers continue to look good, I believe that we’ll get rolling on round 2A sometime in the middle of next week.

In the mean time, I’m enjoying some days of feeling good, eating well, and spending time with family.  My parents traded places this week, Mom headed back to Nebraska and Dad here to San Diego.  Murt gets a temporary break from my sass and sarcasm and Daddy Wags steps into the heat of the anti-cancer kitchen.  Leigh spent the week with me last week during the toughest stretch we’ve hit on this journey thus far.  It’s truly a full-time job cooking and caring for me, especially during my rough patches.  I couldn’t do it without my family, who I love beyond words, and to whom I can’t adequately express my gratitude.

One more quick thing that I just have to get off my chest. I mentioned in a recent post that I have been craving some junk food…true confessions time, and I know Leigh is gonna read this, so I’m just busted.  I snuck out on Sunday for an original chicken sandwich from Burger King!  When I was about ten years old (Leigh would’ve been eight) we used to make my Dad drive us through Burger King (or Amigos) after piano lessons.  I’d order a “long chicken sandwich” or chicken soft tacos every time.  For those wondering it was just as good as I remember.  No regrets!

Final note on the nutrition side.  It’s normal to lose weight during chemotherapy.  Treatment speeds up metabolism, which in my case is already pretty high to begin with.  During times when food tastes good, like this week, I’ve been working hard to take in a lot of healthy (minus my BK breakdown!) high quality calories.  I’m happy to share that I gained five pounds between Monday to today!  I’m working towards a goal of gaining at least five more pounds before my next weigh-in on Monday.  Gain ten pounds this week.  How’s that for a new year’s resolution?  Anyone working to move their weight in the opposite direction can feel free to live vicariously through me.

And, fair warning, I still haven’t satisfied my California Burrito craving, so if it comes down to Sunday night and I’m still short a few calories, it’s going down!

–T

On The Upswing

Bald Tyler

Freshly showered and shaved

It’s been a long week.  Actually, It’s been a long couple weeks to say the least, but the last few days have been particularly difficult ones.  In the interest of getting everyone up to speed, here’s a quick update on the last two weeks or so:

  • Saturday, January 7th: Discharged from hospital following 7-day stay for administration of “1-B” treatment
  • January 8th-9th: Cell counts begin to fall (as expected) following chemotherapy. Extreme loss of energy and appetite.  Eating is an exercise, and my body refuses to let me keep anything inside.  Hydration is a constant battle.  Sleeping is pretty much all I can do.
  • January 10th: Check into the ER after taking an at-home temperature of 102 degrees; Admitted to hospital, and immediately begin broad-spectrum anti-biotics, blood work, and a variety of cultures seeking to identify source/cause of potential infection.
  • January 10th-14th: Persistent high fevers (102-103) and diarrhea continue; no success in keeping food or liquids in my body long enough to be absorbed.  I’m on IV, so hydration and electrolyte replacement is ongoing.  Blood and stool cultures continue to come back negative for any specific bacterial infection.  CT scan ordered for chest (checking for potential infections like pneumonia); abdomen (checking stomach, organs, intestines, etc.); and pelvic region (colon);
  • January 15th: Results of CT scan reveal “Neutropenic Colitis”; severe inflammation in intestinal walls as a result of chemotherapy, and worsened by the lack of any immune response to help fight off the inflammation.  At my lowest point (known as “nader”) my white cells were basically undetectable in my blood. This was the case for about 4 days.  Over the course of those 4-5 days, I received several transfusions of platelets (short-lived red cells) which were struggling to survive my high fevers, along with one transfusion of blood to address low levels of hemoglobin.
  • January 15th-17th: In an effort to rest and heal my gastro-intestinal tract, they decide to start feeding me via IV and order me on ice-chips only.  Fortunately, as all of my cultures had continued to come back negative for infections, they allow me the luxury of immodium, which provides significant relief.  Broad spectrum anti-biotics continue, along with various anti-viral and anti-fungal medications to address potential underlying infection, and ward off possible outside infection.

I’m happy to share today that things are turning for the better!

Over the last several days, my body has once again began to produce white-cells, which will assist in the healing of my intestinal tract along with fighting off any general threats. My white count has been trending upward for several days, and was at 5.6 (within the normal range) this morning.  Other important numbers to watch are my hemoglobin and platelets (which are both trending upward but below normal range); and the big one, absolute neutrophil count, which was 250 this morning and trending upward.

Dumb and Dumber toilet

Kind of like this, but for 8-10 days.

I’ve been fever-free for going on 48 hours, and they’ve given me clearance to drink/eat clear liquids (water, broth, jello, etc.) to see if my body is ready to return to normal food in the next few days.  I haven’t had any internal bleeding, and the immodium has made for fewer trips to the bathroom, which is great because my life was starting to feel like watching the bathroom scene from Dumb and Dumber on repeat.

I’m hoping I tolerate the broth and jello well, and I’m able to transition to whatever comes next.  Shakes and smoothies?  Cheeseburgers?  It’s funny, I’m not as hungry as I thought I would be while being fed though a tube, but I still crave food, and it’s mostly junk I’m craving.  Burgers, burritos, burger king chicken sandwiches, it all sounds good.

Hopefully next time I write will be from the comfort of home once again!

Love you all.
–T

Treatment Update: Day 32

Hello Team,

This post comes from UCSD ER, where Tyler is being admitted back into the hospital for neutropenic fever, so far hitting 103 degrees. Basically, his immune system is at zero, and something, we don’t know what yet, has triggered an infection in his body. He has just submitted all his labs and will have full cultures done in the next few days. Until the results come back, he will be treated for general infection via IV antibiotics. If the lab results indicate a localized or specific infection, antibiotics will be adjusted to target. In the meantime, he will have to have a stay-cation in the cancer ward for the next few days until his white cell counts boost his immune system and the fever clears. Kind of stinks, but it is necessary, and good that we know how his body is tolerating the chemo, so that dosages and cell support can be adjusted in the future. Plus, we were warned that this may be inevitable, with no immune system, this was a potential outcome.

Some better news is that Tyler’s liver enzyme levels are trending towards normal. Over the last week he has been experiencing abnormally high levels that were limiting the amount of medication and types of food and supplements his liver could safely process.

Some extra good news is that Leigh is here this week, so Tyler will have extra Team members in the cancer ward with him. Plus, he will get all the good nutrition to help him fight the best fight possible.

Please continue sending your healing thoughts, prayers, vibes, energy. The last few days have been really hard on Tyler’s body. He has literally been drained of his bad (and good) cells, and it is painful and tiring. We are trying to remember to think of the chemo as our ‘friend’, but it is hard when it is creating a violent fight against the cancer inside of him. A heck of a bloody war, but revolutions are not always pretty. Keep fighting Chemo, Tyler is using all his might to keep the battle grounds intact.

Treatment Update: M-I-Z-Z-O-U Thank You!

Team Tyler Mizzou

Bald head, Mizzou shorts

Belated happy new year to everyone, and greetings from Room 356 West at Thornton Hospital.  I’m back for round 1B of my Hyper CVAD regimen.  If all goes to plan we’ll get started on chemo this afternoon and I’ll be here for a 4-5 day stay-cation.  Here’s hoping all goes to plan.

I have a lot to be thankful for as 2012 begins, and a lot of thank you notes to write as I pass the time here for the next few days.  Your greeting cards, text messages, emails, words of encouragement, and all around kindness and generosity are helping me to stay positive.  For that, I am grateful.

And I’m feeling love and support, not only from my friends and family, but from people who don’t even know me!  Let me elaborate… Continue reading

Treatment Update: Day 18

Greetings to my big Team Tyler Fam!

I hope this message finds you all happy, healthy, and enjoying the final week of 2011.  I had a fantastic Christmas holiday spent with family and loved-ones.  Santa was waaay too good to me this year.  For a brief period of time on Christmas afternoon, I got to experience the sensation of time-travel, as I was transformed into a ten-year old boy while unwrapping a new bike and stationary trainer.  I’ll be able to take both with me to the hospital for future inpatient treatments, which will be great.

I’m committed to staying as active as possible through this process, but the last few days have been challenging. I’ve been doing my best to listen to my body, and it has been telling me to rest.  I am feeling physically drained.  I got up this afternoon and got my legs moving at the track at UCSD for a bit, and I’m actually feeling pretty good at the moment as I drink a blueberry smoothie packed with proteins, oils, fresh greens, and vitamin-c.  It’s important that I eat as much as possible, as my body is metabolizing calories at a higher rate than normal.  My appetite comes and goes, so the fact that food is tasting good right now is a great sign.

I’m a “Monday-Thursday”, which means tomorrow is my Thursday blood draw.  Twice a week I will be visiting the Moore’s Cancer center for labs and occasional out-patient chemo treatments.  The most important number to watch is my absolute neutrophil count (ANC), which gives us a way to measure the strength of my immune system as it responds to the chemotherapy.  Ideally, after a few days, my count rebounds, and my immune system bounces back to normal–at which time we blast the cancer again with another round of inpatient chemo.

If all goes according to plan, I will be receiving inpatient treatment at Thornton Hospital every 21 days.  And, all is going well so far.  In fact, I just got a voicemail from the hospital confirming my admission on January 2nd for round 1B of my Hyper CVAD regimen.

My hair started falling out in the shower today.  It’s strange.  I knew it was going to happen, but it’s just another one of those “this is real” confirmations.  Tash has been asking to cut my hair for months now, but I never trusted her enough to let her try.  I guess she’s going to have her chance!

Lots of love to you all!
–T