Well guys, guess what! I'm back! That's right, I've managed to bounce back again (always will :)). This one was definitely not easy, though. It's been a long time and a hard road to recovery (and just from one setback, though it was to a pretty major function (you know, breathing?). Anyway, it's good to be out of the ICU, and it's really, really, REALLY good to be back in touch with all of you again. This is really my first really emotional post because its been a very emotional couple days for me. Yes, I admit I cried quite a few times. But the funny thing it it was always because I'm not used to so many people caring about me. Don't know why, but I never liked to think of myelf as an emotional person. The past few days, though, I know I have been. Checking my email for the first time in two weeks, I was overwhelmed in the greatest way by everybody's show of support and care for me. Thanks again everybody, now more than ever. I need all of you - You're really keeping me going and recovering here. Taking baby steps to relearn how to walk and eat again... Have a lot of weight and health to regain. Will try to get back into posting regularly again soon!

Right before Justin underwent the procedure to drain the fluid in his pleural cavity, he asked me to post a blog for him in the event that he was not able to keep the blog entries up to date. Immediately after the procedure, Justin suffered a major set-back and has been in the Intensive Care Unit ever since. His lung functions are making incremental improvement, as are the statistics of his blood counts. Although he can't quite keep up a smile because of all the tubings hovering his face, he occasionally gives his doctors the "thumbs up" to convey his morale. I know he would also want to give you the thumb's up to keep up your morale. Would you return in kind? Margaret (the mom)

For a good portion of my life, my approach to success had been "Be the best in the world". This aim brought me a fair amount of success, and a huge amount of trouble. With bloated expectations and a hyper-competitive attitude, I was the social equivalent to high-grit sandpaper. Luckily, a good year or two before this journey began, it became apparent to me that my absolutist way of thinking of success may not be the healthiest.

"Aim High." Now that's a nice relative phrase. What's high? Under some circumstances, it may in fact be being the best in the world. Right before this journey started, it was programming a pretty challenging web application. My latest success? Successfully completing my oral hygiene routine.

This morning, my red blood cell count plummeted, effectively limiting my maximum standing-upright-limit to 20 seconds. Beyond that I'd start to feel light-headed, hear a ringing in my ears, and most likely pass out. Here's the breakdown of my success:

1. Sit up from my chair very S-L-O-W-L-Y.
2. Put the footrest of the chair down
3. Stand up (again, very slowly)
4. Walk about 5 feet to the bed. (very slowly)
5. Sit down on the bed (very slowly)
6. Hang out for about 30 seconds for the oxygen to circulate.
7. Stand up (very slowly)
8. Walk (very slowly) around to the OTHER side of the bed
9. Repeat Steps 5- 7.
11. Very quickly grab my toothbrush and toothpaste
12. Repeat Step 5.
13, Brush teeth while sitting down.
14. Repeat step 7.
15. Spit and rinse.
16. Repeat Step 5-7
17. Rinse toothbrush and get mouthwash and cup.
18. Repeat Step 5
19. Swish around mouthwash.
20. Repeat Step 7
21. Spit out mouhwash, wash sink, and quickly put everything back in order.
22. Repeat Steps 5-8.
23. Walk about 5 feet to the chair.
24. Sit down on the chair (very slowly)

And that's it! 1 oral hygiene routine successfully completed!

Since this morning, I received a blood transfusion, which replenished my red blood cell supply. Now, I can scale up my goals. Just went to take a walk in the hall with my sidekick walker. Think I may have gotten a bit too enthusiastic, as I scared the nurses with my brisk walking pace. Also been packing in food (sometimes against my appetite's will) to get the protein necessary to repair all the tissue damaged by the chemo and the hole in my side.

Anyway, the moral of the story is that a good relative and quickly scalable outlook on success is the key to being able to deal with what life throws our way.

Getting sleepy... For everybody who's left me an unanswered message, I apologize for not responding. The reason is that talking and keeping my eyes on the computer screen are a bit tiring, and I need to conserve energy for tasks like my oral hygiene routine, eating, and exercising. I really appreciate all the care you've shown for me. I'm thinking of all of you at the same time you're thinking of me!

Just a quick post to express my thanks to all my family and friends who have been sending their care and moral support. I'm really lucky to have you in my life!

Almost bedtime for me - not much energy left after the party. My sister made me a paper party hat with "Fiesta" written on it, and I went out into the hospital hallway decked out in my mask, hat, walker, and IV apparatus to take a walk around the block. People kept asking if it was my birthday.  Nope! It's my last day of chemo!

 

That's right, after 4 chemo drugs and 10 days, I'm done.  Of course, this is just the beginning of the wait-and-see period. But we figured this is a cause for celebration nonetheless. Turns out it's also my friend and co-worker's Matt's birthday.  We're going to start celebrating his birthday and my chemo anniversary together :)

 

For the curious, here are the chemo drugs I was put on:

Daunorubicin - http://en.wikipedia.org/wiki/Daunorubicin

Etoposide - http://en.wikipedia.org/wiki/Etoposide

Cytarabine - http://en.wikipedia.org/wiki/Cytarabine

Cisplatin - http://en.wikipedia.org/wiki/Cisplatin

 

More causes for celebration:

 

- They've stopped monitoring my blood sugar now that I've been taken off the steroids which accompanied the chemotherapy. That means no more being woken up every two hours to get my fingers poked!

 

- My hands and feet, which had been swollen to about double their normal size (Sorry I didn't take pictures, for those of you wondering what I'd look like fat) have now shrunk almost back to their normal size. 

For the past weeks, I've been hooked up to a controlled Fentanyl dispensing machine http://en.wikipedia.org/wiki/Fentanyl (a very potent pain killer). The machine dispenses a controlled amount of the substance, and was given to me to manage the pain of having a drainage tube poking into my chest cavity. A bit of background: Before I was rushed to the ICU, I had a sharp pain in my ribs. I don't know exactly what happened, but from the details I'm able to remember, it had something to do with part of my chest cavity filling with blood and my lung collapsing.

One question I've been asked repeatedly here is "On a scale from 1 to 10, how much pain do you feel"? This is a very difficult question to answer. There are so many different kinds of pain. While the lung collapse episode was one of the most painful experiences I've been through, does that mean it's a 10? I doubt it. Probably an 8 or 9. In any case, last night I experienced a solid 8.5. And it had nothing to do with my current medical condition. I'll spare you the details here, but the gist of it is that due to the position I need to sleep in (I can't fully recline because of the pressure in my chest, a certain piece of my male anatomy got crushed under my leg while I shifted in my sleep. Thank goodness for that Fentanyl dispenser!

A bit about my condition: (Not going to get into the scientific details until I'm 100% sure I'm accurate on everything): I have a rare combination of cancers which include a germ cell tumor in my chest and a form of leukemia. Apparently, records of this type of case are in the single-digits, so everything is a bit up in the air. I've never liked being one of many in anything I do, so it's good that I've been thrown a rare challenge.

While I've been through a lot, and I like to think of myself as a strong person, I really have the best family and friends and, and a great team of people at the hospital all making everything a lot easier for me. To be honest, what I've realized is that up until now, I've been a very lucky wimp. Luckily, I've found that I do have the ability to be strong.

I've been out for a long while - didn't realize how long I've been here. My body is just beginning to regain its strength, and today is the first day that I've started to feel a bit of normal life again (back at the computer). Since my last post, I've been in and out of the ICU, in and out of consciousness. (Will detail these events at a later post - stay focused on the positive for now!). I've gone from barely being able to brush my own teeth to doing 75 squats today! Well, half-Squats while holding onto a walker, but compared to not being able to walk, that's pretty in shape. Two days before, I couldn't walk ten feet without feeling light-headed. Of course, my current state is due to the fact that I've gotten a blood transfusion to replace my red blood cell count. It's good to know at least that my body still has strength in it!