DAY 184: PET/CT today...

I am fasting in preparation of my PET/CT at 2pm today. The goal of this scan is to confirm that there is 'no evidence of disease' in my body. It will become the baseline for all future scans and a confirmation that the chemo eradicated the cancer.

In the mirror last night, and in just the right light, I saw little baby blond eyelashes and eyebrows starting to bud! Also getting a lot of peach fuzz on my chin and head! This is very exciting, since I have less hair that most newborns at this point. Very curious to see how things come in... but am thrilled that there is life within me, pushing things outward! Yes!

It was a beautiful but hot weekend and Candace and I spent a lot of time outdoors. Since I will be at an elevated risk of skin cancer for the rest of my life (aww man!), I have to lather up with 50 SPF pretty much everywhere. I managed not to get burned, but I can tell that my casper-white skin is very sensitive to the sun's rays. I love being outside, so this will be interesting...

Still getting my energy back slowly, but had to take a few days off from the YMCA. My legs made me do it. They are soooo sore-- feels like cramps in my calves. I guess this is a good sign, so I'll keep pushing it.

Candace and I are thinking about St. Augustine, FL for a possible mini-vacation before I return to work. Anyone who has been there, feel free to chime in on advice/reactions!

Happy summer to all!

DAY 178: Baby steps... and many of them...

I have been on the up-and-up for a few days now! No more masks in public, no nausea, no sleep problems, no bone pain, no dizziness... you get the point. I only have two lingering distractions: a little numbness in my fingers and toes, for which I am taking a B-vitamin complex, significant overall fatigue/weakness, and some throat congestion that won't seem to leave me alone.

It's time to start rebuilding my strength so I made a commitment to go to the YMCA every day. I started this yesterday and had the goal of walking for 15 minutes. I'm not talking about speed-walking here... just slow walking.

After three minutes, I started to feel my legs quiver. After five minutes, I was about ready to fall over. I limped the last few minutes, but was able to keep going for all 15. My pulse was 140. I'm going to measure it each time, to see how it (hopefully) drops. Most people don't get a pulse of 140 without some sort of aerobic activity!

Today, after my walk, I sat on the exercise bike for a few minutes on zero resistance. Felt pretty good! I think I'll work that in.

Still not able to jog or run-- which means no softball-- but I get just about as much pleasure as an onlooker in the meantime.

Over the weekend, Candace and I were able to drive to Nashville (my home town) and visit my family and a close friend. It was great: it had been six months since I've been able to do any sort of travel. I love Nashville. What a great town.

My two Burkitt's buddies are still in the thick of it: one started his 5th round today, after having to endure another re-admission delay due to low platelets. His first child is due any days now. Whoa. The second guy just completed his 8th round and will need one more. He started with 2 rounds of R-CHOP (which did nothing), then got 3 rounds of hyper-CVAD (which did nothing) and then got put on a new regimen called CODOX-M/IVAC-R. This is the big leagues of chemo so please pray that he gets into remission and does not need a stem cell transplant. Both of these guys are real troopers and I am honored to keep in touch with them as they finish out the battle with the beast.

I am trying to figure out just when I'll be able to go back to work full-time. I could probably work part-time in the office right now, but getting on a plane or working all day, every day, just seems a little daunting given my low energy. I need to be reminded that this down time as I feel increasingly better is time to be cherished, as it may never happen again! I know, I know... just being stubborn and want to 'keep moving'!

Here are some photos... just for fun.

PS- looks like I'll get a PET/CT scan sooner rather than later, after all. The doc wants one. Hope it's all clear, as we'd expect.

DAY 172: Counts are UP (again)!

So we spent about 30 minutes of quality time today with Tiger Woods, MD. We asked all the questions we could think of: how long will the ports stay in? When will I get scanned? Will the neuropathy last forever? What about the leg fatigue? What's causing my congestion? How often need I return to the clinic? Yadda yadda yadda.

I will keep my chest port in for about a year. The brain port can come out in 3-6 months. I will get my baseline post-chemo PET/CT scan in 3 months. The neuropathy should slooooowly improve. The leg fatigue is mainly from the high-dose steriods I had to take and he encouraged me to try to walk 15 minutes each day, adding 5 minutes each week. We took a chest x-ray to see if the congestion is pneumonia... but I doubt it will be. I have to return to the clinic once a month to have my chest port flushed with saline and heparain. Sounds easy enough to me.

In addition to this chat, we got blood work and learned that my counts have come up nicely since last week! He was pleased, as were we. (Whites at 7.9, Hematocrit at 31%, Platelets at 98k). The latter two levels are still low, but they are trending in the right direction!

DAY 166: Counts are DOWN...!

So my white blood cells, platelets, Hematocrit, and Hemoglobin all took a sizeable drop from Tuesday to Thursday this week. I guess this is what they mean when they say that recovery is gradual and takes time...

I guess I will have to just take it as it comes!

DAY 165: Counts are up!

Even though my softball team was handed a 10-2 decisive loss last night, I learned yesterday that my white blood cells have come up to 5.9! This means I am no longer neutropenic and have made it through my last nadir period!!! YES! A huge milestone. Only one infection back in March and none since.

Today, I woke up feeling somewhat 'normal' -- whatever that means. I feel now more normal than I've felt in 6 months, for sure. I am having to resist the urge to dive back into normal activities right away. I tend to get bored very easily, so I'm already getting the itch to fill my time with work and 'stuff' to do. Not sure how long I can hold out!

Funny -- when I felt horrible, I had no problem sitting still all day and being quiet. When I get a taste of feeling good, I immediately want to avoid quiet/still time. Hmmmm. Not sure if this is good, bad, normal, or what-- but it's me for now.

Ok- off to the mid-week service at our church. That, I can handle.

DAY 163: Bone Pain! A good sign...

Dang, that bone pain is really awkward. I can't accurately describe it, so I won't even try. Just know that it's really a strange experience! The bone pain is an indication that the bone marrow is being stimulated to produce white blood cells. For this reason, I have come to CELEBRATE this bone pain! I celebrate it as a writhe in it. It hopefully means I am about to leave the 'cave' of neutropenia someday soon.

At the clinic on Sunday, blood work confirmed that my tank is still low. I needed 4 infusions (1 of fluids, 1 of platelets, and 2 units of red blood). When I realize that my platelets are less than one-tenth of the low end of an average range, and my oxygen-carrying red blood cells are less than half an average male, I give myself a little more slack for being puny. Just need to be patient and ride it out.

I head back to the clinic tomorrow (5th time since my last discharge) to see where things stand. Really hoping for some positive trends, but we'll see.

Softball game Tuesday night, at which I will be cheering and jeering from the sidelines with my mask on, per usual. Can't wait.

This update is all business. Sorry - not too creative at the moment... not enough oxygen getting to the brain!

DAY 159: Riding it out (one more time)...

So I'm home from what I really, really hope is my last round of chemo forever. Feels great to be here. I don't feel good... but there is hope and excitement in knowing that this should be my last 'dip'.

I have made two trips to the clinic already this week and will go again tomorrow. I got blood, platelets, and IV fluids, and may need another cocktail tomorrow depending on the blood work. My white blood cells (immune system) are wiped out and I hope to come out of hiding sometime next week when they rise back to a safe level.

Luckily, the French Open tennis tourney is on TV for about 6 hours a day, so no secrets what I'm up to to distract myself.

Our softball team won our first game on Tuesday, despite coming in as an underdog. It will probably be quite some time before I get to play, but at least I can watch (and trash-talk) in the meantime.

Two things for which I am really thankful: appetite and sleep.

I weigh 185 pounds right now vs. about 195 when I was diagnosed. How amazing is it that I didn't lose or gain a ton of weight during this chemo process? I meet and hear of many people that have countless problems with their appetite and GI-tract that it really impacts their treatment. Whew.

As for sleep, I've been able to avoid taking any sort of medication for sleeping assistance, because I generally fall asleep well. When I get bone and leg pain, I often wake up several times at night, but for the most part -- both in and out of the hospital -- I have rested well. I can't imagine how it feels to be sleep-deprived on top of everything else. Whew, again.

So long as I avoid an infection over the next 5 days or so, I may be able to 'start' the long road to recovery! Wooooo-hooooo!