DAY 153: 38 mins more of chemo...

I am sitting alongside what is to be my last dose of chemo. The infusion pump reads 'time remaining: 38 mins'. This drug, Cytarabine, can cause neurological problems, so they make you sign and print your name every once in a while to make sure wires aren't getting crossed.

When I started chemo on Dec 29, the trees were bare, there were no fresh blooms, and the sky was gray. Today, however, it's a beautiful, colorful, vibrant sunny day in the early summer in Atlanta, and I'm soon approaching a finish line that, often times, I thought would never come. For that reason, I don't know how to characterize how I feel. What I do know is that I am very, very content and peaceful. I feel as though I have been sustained for the last 153 days by the grace of God Almighty, the love of friends and family, and the tender care of nurses. It has taken an army.

'34 mins' now.

I don't have the urge to rush to pack up the room and run out the door. I feel most comfortable just sitting here in silence and closing my eyes, thinking about how loved and cared for I am. Thankful for so many things.

'31 mins'.

So I'll soak in this final half-hour doing just that.

DAY 151: In the saddle for Round 8...

My platelets needed to be at least 75 for me to be readmitted yesterday. They were 75. On the nose. Hmmm... do you find that to be ironic, like I do? To have not had any delays over the past 6 months is nothing short of a miracle. I spoke with my pal who is on the same chemo as I am, and he has had a 30-day (and counting) delay in getting from round 3 to round 4. Sheesh. I am SOOOOOOOO fortunate in this.

We have crossed Rituxan off the list and will cross Methotrexate (Lizard Spit) off the list tonight around 12:30am. Then, just one more to go. Best case scenario, we will make it out of here by the weekend and then start our journey into what I hope to be the last nadir. That last "please, please don't come near me" dip.

I was told by the docs that it will probably take 12 months to regain my strength. I hope to prove them wrong. Not sure how or why I think that way, but I just don't want to be exhausted for another year... or miss softball this summer!

The hospital food is spent. I can't even be near it anymore. Those brown plastic lids they use to cover the foods just don't sit well with me. Get that tray outta here, please! Fortunately, Candace went to the organic grocery down the street today and brought me some great spoils: an avocado, sprout and swiss sandwich, some fresh fruit, and some other tasty treats.

The weird thing about chemo that I did not anticipate is the change in appetite. Between losing taste buds and the high-dose steroid, I now crave foods that would've NEVER touched my lips. I am speaking of Twix bars, cheese pizza (Papa John's or Domino's deep dish), Ruffles potato chips, and even cravings of meat! (I haven't eaten meat since Feb 1996!) I'm just rolling with the urges (save the meat part... for now). I am O+ blood type, which I think needs to be a carnivore to get all proper nutrients. So, as my boss says, maybe this chemo will "cure me of my vegetarian thing".

I am hoping for Indian food for dinner tonight... I need to call that in.

DAY 149: The possible eve of Round 8...

I've spent about 95% of this weekend in my chair or bed... recouping from the previous round of chemo as well as some sort of cold/congestion/aches. The best part about that is that I'm not neutropenic, so I don't have to take my temp and constantly fear infections. Fine by me! It's all relative, eh? I have really enjoyed the rest and not having any agenda to meet.

I also must add that I've eaten veggie dogs, baked beans and home-made mac-n-cheese the past three days. What else is Memorial Day weekend for??? Overdoin' it, indeed.

If my platelets are up high enough (which will be revealed via blood work tomorrow morning), I am scheduled to be readmitted to Emory tomorrow for my final round of inpatient chemo - round 8. Not really sure how to process the arrival of this milestone just yet... so I'll sit on it for a bit over the next week and see what comes up. Sometimes, I'm not really in touch with how I feel about things.

The one thing I do know to be true is that there is quite a bit about this process that I don't want to end. While I surely want to feel normal again and regain strength and health and have some semblance of stability, I am not ready to jump back into life in high gear again.

I don't want life to return to it was before this started. It's probably naive to think that's even a possibility, because I am forever changed in a lot of ways... but if I know myself, I know that I am prone to a happy-go-lucky, ignorance-is-bliss default that could creep in. That's the piece I suspect will not return as it was.

Today is the 4th anniversary of Candace's mom's death. Be sure to read her blog and get a glimpse into her world on this day.

DAY 146: Birthday thanks...

I am thankful that my time isn't over yet;
I am thankful that God sustains me in my weakness and will never leave me;
I am thankful for a wife that has stood by me every single day of this journey;
I am thankful for a supportive family that has put life on hold in so many ways to lend a hand;
I am thankful for a community of friends and loved-ones that cares for us dearly and shows it;
I am thankful that physical pain is temporary and eventually passes;
I am thankful that I have a job that provides for my family;
I am thankful for the roof over my head and the provision in my life;
I am thankful for the sunshine that basks the new flowers in our front yard;
I am thankful for our furry children who seem to know I'm going through a hard time;
I am thankful for all the other cancer fighters out there who don't give up;
I am thankful for a whole lot more...

Candace just showed this to me... and I feel like I need to read it over and over and over again. Maybe there is a morsel or two in there that will call out to you:

"Quit living as if the purpose of life is to arrive safely at death. Grab life by the mane. Set God-sized goals. Pursue God-ordained passions. Go after a dream that is destined to fail without divine intervention. Keep asking questions. Keep making mistakes. Keep seeking God. Stop pointing out problems and become part of the solution. Stop repeating the past and start creating the future. Stop playing it safe and start taking risks. Expand your horizons. Accumulate experiences. Consider the lilies. Enjoy the journey. Find every excuse you can to celebrate everything you can. Live like today is the first day and last day of your life. Don't let what's wrong with you keep you from worshipping what's right with God. Burn sinful bridges. Blaze a new trail. Criticize by creating. Worry less about what people think and more about what God thinks. Don't try to be who you're not. Be yourself. Laugh at yourself. Quit holding out. Quit holding back. Quit running away. Chase the lion."
- Mark Batterson

DAY 143: Counts coming back up... still weak...

Well my whites are doing their job and are heading up instead of down! YES! This means that I believe I can safely say that we've cleared the woods when it comes to infection risk, and that I am so very excited that I will only have one more nadir where I get exposed again. If they have to rip out my 2nd port and my brain reservoir, then they would probably not have to reinstall them! (Man, that sounds funny, doesn't it?)

I have also checked my steroid off the list as of last night (320 pills in all!). I was on a 10-pill dose, when most people take 4. This steroid was not the kind that builds you up... it's the kind that rips you apart. Nonetheless, I am happy to scratch that one off the list. Only three more drugs to go, and those will all come off the list next week (if all stays 'on schedule'). Can't take that for granted, as my friend was delayed no less than two weeks in his hopes to get back to his next rounds of chemo. I am so grateful that I have been able to keep rolling ahead.

I have been on a short-term disability leave from work, which has been a mixed bag. Pay got cut in half which has put the squeeze on some things, but it will be very nice to have a little time carved out and protected for my recovery in June. I don't think I'll be able to jump back into full work weeks and plane rides as soon as I had originally anticipated. A good thing, I bet. Forced down time!

My birthday is this Friday, May 22. I'll be 32. I don't really get excited about birthdays, because I honestly don't want things/gatherings to be 'all about me'. I really don't. BUT, passing another milestone in age is going to be a new thing for me to celebrate. I used to take birthdays for granted. That was when I thought I was invincible. But having the surprise of cancer at 31, getting past 32 is pretty darn amazing!

DAY 140: A long recovery?

I have had a slow week. Translation: felt pretty crummy. When I was back at the clinic on Friday, we ended up needing not only chemo, but also platelets AND two bags of red blood. My counts are near zero right now, and my other levels were so low that we needed to transfuse.

They keep reminding me that I have had seven rounds of one of the most aggressive chemo regimens out there and that the process is cumulative. Ok, ok. I hear you... finally. I have no choice but to hear them!

The physical sensation of anemia and low counts is hard to describe. Standing for longer than a few minutes is not an option. Basic physical activity is so labored and I get extremely winded. It feels very uncomfortable. Walking up the stairs... a tough task. Walking to the bathroom... a tough task. Going to prepare a glass of water in the kitchen... a tough task. I will have to sit or lie down as soon as possible, and my pulse races. My heart rate becomes the equivalent of yours after you've run for 30 minutes straight, and I have simply walked across the room! It's also a very heavy heartbeat, where I can feel it pulse through my entire body, and even see my clothes bulge out with every beat. A truly unique experience.

I am on my steroid for four days (for the last time). While I haven't shaved in five months, these pills give me some nice white/grey peach fuzz whiskers on my chin. A funny look that I've enjoyed.

I have a friend who went through this same chemo one year before me, for treatment of Burkitt's as well. She gave me some insight into the post-chemo world that was enlightening. She kept her port in for A YEAR. She returned to the clinic for blood work (and to flush the port) every four weeks. She did not get any scans, except for the final one after treatment. They told her that she would know the cancer is back before any scan would!

The most discouraging piece of info she shared was that her blood counts took a full year to recover, and that the average for this hyperCVAD chemo is 9 months. It's just so harmful to the body that it takes quite some time for the 'damage' to wear off. While the Neulasta shot we get is a temporary pop to get us ready for the next round of chemo, when you wait on your body to start naturally producing white blood cells, red blood cells, and platelets, it is a much slower process.

I am telling myself that each person's body is different and mine may react totally differently. This is code for, "I'm gonna heal much quicker than that!!!" Clearly, an empty and unfounded statement, but it's my self-deception for the moment, nonetheless, and I'll run with it!

I just really, really wanna play softball, to be honest!

DAY 137: Do I really have one more?!?

The inpatient portion of Round 7 is complete and I am back at home in the 'recovery' phase. My counts are down, which means I have the typical dietary limitations and quarantined lifestyle that I have come to expect over the past several months.

More great news: I was able to check two chemo drugs off the list for good, meaning that I don't have to take them again (Cytoxan and Adriamycin). Cytoxan is the biggest culprit for nausea and Adriamycin causes heart problems, so these are two that I surely will not miss.

Friday, I will go to the clinic and get my last dose of Vincristine and over the weekend I will take my last doses of Dexamethasone. Two more I will be able to check off the list.

Then, I will be left with three more drugs for which I look forward to calling it quits. If I stay on 'schedule' (a term I use jokingly), I will be out of the hospital by June and ready for a few months of recovery where I will learn to re-use my body. Undoubtedly, it will be a slow process of learning how to function in normal ways, yet again. Like a little kid learning everything, I expect it will be a pretty exciting time for me.

I have met two other Burkitt's Lymphoma patients at Emory (these are the guys who are my contemporaries, ironically enough). One of them has their first baby due in 7 weeks and is on Round 4 of treatment. They are newlyweds and clearly a lot of life changes are all happening at once. He was supposed to go back in for his Round 4 last Tuesday, but won't be able to do so until this Thursday due to his bloodwork. I can imagine the frustration when things don't progress at the clip we've set forth in our own minds. It takes me back to the whole 'I am REALLY not in contol' truth of all this. Hang in there, Jon. You will make it before you know it and start your new family.

My co-workers did a really nice thing for my upcoming birthday: they had a caricature drawn of me in a boxing ring, knocking a big 'cancer' gorilla out. 'Gotta be tough to go 8 rounds with the beast!' In the drawing, I have a six-pack and huge biceps... clearly a mockery of where things stand, but otherwise it might not have been a fair fight, right? Thanks to all of you for your kind notes and gestures. It has put a smile on my face that will stay for quite some time.

I have signed up for a softball league with my church for this summer, and I am VERY excited about the upcoming games. It will be several weeks before I can get on the field, but the thought of having a goal out there motivates and excites me. My wife will play and I am very proud of her! I will enjoy cheering the team on, and talking the prerequisite trash to all the other teams as they fumble about. This is good livin', as far as I'm concerned.

My mother came down from Nashville to help take care of me over the weekend, and my sister is here now. We were able to celebrate Candace's birthday Monday as well as our 6th wedding anniversary on Sunday! Six years... and so much has happened. If you haven't already, I encourage you to read Candace's blog entry from Mother's Day. She lost both her mother and father in 2005 and has shared some very touching thoughts. Thank you, baby, for sharing.

DAY 132: Facts and Figures...

Platelets were thankfully up to the 125 range, which permitted a timely readmission for Round 7. I am hoping to get discharged over the weekend, and back to our own home and bed. Can't wait. I have had 6 bags of Cytoxan on this round, so the nausea is coming on with full force... but the great news is that will be the last time I receive that drug! No more Cytoxan!

Here is a pretty staggering recap of what we've come through thus far:
172 days since diagnosis
132 days of chemo
8 weeks in the hospital
40 trips to Emory Winship cancer clinic
1 Emergency appendectomy
2 trips to the ER
12 vials of frozen future Smartt babies (well... Stuart's contribution at least)
2 ports (in chest; nice matching scars!)
1 brain reservoir (for chemo directly into the cerebrospinal fluid ventricle)
8 intrathecal (spinal/brain) chemo treatments
7 blood transfusions
8 platelet transfusions
1 Atrial Fibrillation with a chemical shock to get heart back in normal rhythm
1 bone marrow aspiration (may need more)
1 lumbar puncture (with 8 unsuccessful lumbar jabs)
10 days of severe spinal headaches
320 steroid pills
7 types of chemo
24 bags of Cytoxan over 72 hours
8 bags of Vincristine
4 bags of Adriamycin over 48 hours
4 bags of Methotrexate over 48 hours
8 bags of Cytarabine over 64 hours
10 different antibiotics, 4 of which I take twice daily every single day I'm at home
4 PET/CT scans
1 really bad STAPH infection with a 104+ fever for 4 days straight
2 quilts and 1 lamp for every hospital stay
1 Season of Lost (1st season on DVD)
1 Season of American Idol.
5+ months of missed work
$300+ spent on parking
Unexplained fever spikes and night sweats
Hours and hours and hours of waiting
Large amounts of Rice Crispies and Gatorade
Too many vomits to count

Endless packing and unpacking...washing, folding and repacking
Many friends I never knew would be such amazing friends
So many caring nurses and great doctors
So many more courageous, beautiful people fighting cancer
Enormous change in both Candace and me - we are forever changed
Ceaseless prayers offered up on our behalf
Great supportive family (blood and church)

May is a special month for us: we both have 32nd birthdays, our 6th anniversary, Mother's day, and the 4th anniversay of Candace's mom passing away (5/25/05). We have so much for which to be thankful... and we are!

Thanks for sharing with us!

DAY 128: The eve of Round 7...maybe...

Tomorrow I get lab work to see if my platelets have recovered enough for another beat-down. If so, I will be readmitted. If not, I assume I will wait until later this week and try again. I've never had to delay a round due to levels not coming up, so I guess this is what they meant when they said the chemo is cumulative: my body is just having a harder and harder time recovering.

The fevers and migraines... well they just went away on their own. Not really sure what was causing them, or moreso, what made them cease. I am very happy, nonetheless!

When round 7 is over, I will be able to say "one more round!!!" and I cannot wait to do so.

Day 128? Whew. I guess after you've been hanging in for long enough, you just get used to hanging in. And, well-- I'm hanging in!