DAY 93: Last brain chemo and a possible paroloee...

Well I am told that in a few minutes I will receive what we all hope to be my last Intrathecal (via my brain resevoir) chemo treatment. This is good news. No-- great news. The risk of infection is so high that I am all for people no longer pricking my skull if at all possible. I won't get the resevoir surgically removed until after I am well and complete with all 8 rounds of chemo, so the half-horn look will stay with me for a few more months. Sorry, kids, I know it's scary.

I am hoping to get out of the hospital today and go home. Even though I still feel nauseous and queasy and tired and drained and yadda yadda yadda, it's a lot more fun to feel all that at home rather than in an institutional environment.

Staying here, even if only for a week at a time, has made me wish I had spent more time visiting my dad's mother in the nursing home before she passed away. She was there for many years and I feel like it must have been miserable stuck in the same bed, with the same horrible food, and the same pitiful, unchanging view. All she wanted to do was be taken outside for a walk, which I regret not doing for her more frequently.

Day 93 seems like a long time, I know. Easy to let life go on for those not fighting anything right now. But for me I assure you that every day is fresh and real for me and I don't have a way out just yet. Thanks for those of you who are hanging in there with me... I know it's getting long. Trust me, I feel it every day.

DAY 90: New port and a clean scan...

Well I am back in the hospital for what will likely be another 5 nights for my 5th round of chemo (an A-block). Yesterday moning, we had another port put in my chest. As a reminder, a port is a small implantable device with two chambers covered by a self-sealing silicone lid. Attached to the port is a ~25cm catheter which is threaded over my collar bone, down my superior vena cava, and then down to the upper chamber of my heart. Any infusions I get are virtually immediately circulated throughout my entire bloodstream/body.

I had this same type of port on my right side, but it was removed last week as a result of my infection. Most often, the infection will lodge in any foreign body and the antibiotics cannot effectively treat it. So they have to take it out, without knowing if the infection is even located there. Mine came out, and was clean... so it didn't need to come out. Hindsight...20/20...yeah.

So when I was going back for my port surgery, they had to give me another IV line in my arm. It took them 4 tries to get the IV catheter inserted successfully. Ouch. I don't want pity, but I've had 9 IV lines in my arms in the past week. They are eaten up. Lots of bruising and pock marks. Having the port back sure makes my arms happy!

Two doors down from our room there are two to three armed guards sitting outside the door. THey have guns. We kept asking the nurses what the story was, and they would not leak a word. I even asked, "Are the guards there to protect that person, or protect us from that person?" This morning, we learned it's the latter. It's a prisoner getting chemo. Cool, huh? Maybe I can make a new friend.

And the best news of all: my PET/CT came back squeaky clean. I am still in complete remission and there is no evidence of the disease in my body. Unfortunately, we still have to do 8 rounds, as all of the clinical data (and high response rates) were based on 8 rounds of R-hyperCVAD-M/A treatment. Ok. So after this round, I will hopefully be 5/8 of the way through treatment. We just hope there are no more infections out there awaiting us... that was something we could certainly do without.

This round is the one with the steroids... so that bodes well for blog updates! Thanks for reading.

PS- a long-time high-school friend of mine, John Bearden, lost his mother this week in Nashville to cancer. Please keep them in throughts for those of you who think and prayers for those of you who pray. Thank you...

DAY 88: Here we go again... Round 5

Hey there, it's Stuart again.

Well after a few days of recovery, it's time to go back in the game. I have surgery scheduled for tomorrow at 7:30am to put ANOTHER port in my chest. This time it will be on the left side... so I guess I'll have matching scars. After surgery, I'll be admitted for Round 5 of chemo.

Yesterday, we spent the day at the clinic getting lab work, meeting with the nurse practitioner and also getting a new PET/CT scan. While my counts are 'back up' enough to be stable, it amazes me how low they are relative to normal ranges. Virtually none of my blood levels are within normal specs. I guess this is what they mean when they say that the chemo is cumulative. My starting point each time seems to get lower and lower.

The bout with infection last week was really, really, really scary and rough for us. I've never had a fever north of 104 and the shaking was so bad I thought I would pass out. Neither of us really enjoyed another 5 nights in the hospital between chemo rounds, either. But we made it through, by the grace of God, and here we are... onto the next day.

Adding insult to injury was a pitiful first-round loss by my alma mater Wake Forest against powerhouse (?) Cleveland State. Is there nothing sacred?

Another update hopefully coming soon, after surgery and check-in tommorrow...

DAY 81: Home sweet home...

This is Candace.
Just wanted to let y'all know we are home.
Stuart's counts JUMPED up over night...high enough to be released.
We are SUPER excited and thankful.

They pushed us from coming back on Tuesday to coming back next Thursday for Round 5...it will be awesome to have a break at home.

Cough and dizziness and weakness are still issues...but for now the doctor is chalking it up to 3 days of high fever and a severe bacterial blood infection.

Hopefully, the next update will be from Stuart!
Thank you all for your prayers.

DAY 80: Still fever free....still a prisoner in the hospital.

This is Candace.
Quick update:
Fever still down.
They pulled some cerebral spinal fluid today to check for bacteria there - Should have results tomorrow.

Still having problems with:
1)headache and dizziness
2)bad cough
3)counts are not recovering (although whites came up from <0.3 to 0.5)

Even if he doesn't have fever, they will not release us until his counts go up.

He is VERY weak but feeling better than the past 4 days.

His oncologist came in today and said "You were VERY sick, you were VERY sick" (His emphasis on VERY).
Thank God we are in a safer place regarding the infection. Not "out of the woods" but headed that way.

Stuart had some fluid on his lungs this morning. They gave us a breathing machine to work his lungs and they seem to be better.

Tomorrow will be Day 6 of this hospital visit. Yuck. (but thank God for good doctors)

Will update soon. Keep praying.
Goodnight

DAY 79: Finally fever free

Please go to candacesmartt.blogspot.com to get my update on Stuart!

DAY 79: We see one case per year...

This is Candace again.
Yesterday was a long, worrisome day for me!
We started around 5 am with 2 bags of platelets and a 3rd bag in the surgery room.
They came and got him around 9am.
They got the port out as planned with no bleeding issues.
The have inserted an IV in each arm so that they can adminster blood, meds, and fluids (since we no longer have the port to do this).

Stuart had a high fever ALL day yesterday...it continued to get higher and peaked out at 104 around midnight and stayed there.
We had poor Stuart packed out in ice - under his arms, behind his neck, on his stomach - he was shivering and so hot you could (in Stuart's words) "cook an egg on his head".

They will not let him have Tylenol as they want to see the "trend" of the fever - when it peaks, how frequently it peaks, etc - will tell them lots of information. So no artificial means of altering the fever... which means Stuart has to suffer through it.

Bless his heart - he is a trooper. He is very brave.

The fever broke this morning around 10 am.
It has continued to go down slowly.
They stopped his antibiotic early in the morning - his labs showed that the levels of antibiotics in his blood were too high.

He started vomiting around 11am and got really bad vertigo (the room spinning), but this passed and they are watching him.

The Doctor of Pharm. came by this morning and told us the bacteria was identified as "Stomatococcus" - a sister of Staph. He also told us that *HE* only has 1 or 2 cases of this bacteria a year.

Our oncologist came by after this and told us they are taking him off the Vancomycin (standard treatment for Staph.) They think Stuart is having a reaction to the Vancomycin. They will start a antibiotic they like to withhold for bugs that are resistant to Vancomycin..."It will be like killing a sparrow with a bazooka", the PharmD said. "Use the Bazooka", I say, "Just kill the sparrow."

So the persistent fever can be because:
1) Stuart is having a reaction to the "old" antibiotic, Vancomycin....OR
2) There is another bug present besides the Stomatococcus that isn't showing up on the cultures.

Either way, he is hoping that this change in antibiotic will fix both of these.

He said he also feels like they still have "control" over the infection.
Stu's vitals continue to be good. Once these start acting up, we could be looking at sepsis.
This is not an option.
This antibiotics will work.

They are giving us until tomorrow for the fever to go (or stay) down...then they start checking the brain port, Cerebral spinal fluid, etc.

The other complicating issue is that Stuart's blood counts have not recovered. His red and white counts are decimated.
By this time in his cycle, they normally are on their way up.
Since Saturday, he has gotten 4 bags of blood and 3 bags of platelets...and continuing to get his Neupegen shots to stimulate the white cells to grow.

They will not let us leave until his fever is gone and his counts are up.
So - home sweet home for now.
And...we are supposed to come back for Round 5 a week from today (for now they are keeping us on schedule). This will be one long hospital stay! :)
I don't know how one goes into a round of chemo when your body is so "down", but I guess we will find out.

So, please pray:
- that these new antibiotic work and the fever STAYS down
- his counts start recovering quickly

That's all for now.
Will update soon.

DAY 77: Infection and fever...

This is Candace - I am posting a quick update for Stuart.
We had an unexpected admission to the hospital yesterday afternoon.
We went to clinic at 8:30am to get labs drawn and were home by 10:45.
Around 1:00, Stuart started getting the "chills". Soon after, we took his temperature and it was 100.2.
We called in and they instructed us to come into the hospital.
We came and they started him on IV antibiotics. He has NO white blood cells so he has no way of fighting infection.

Two hours later, his fever spiked to 104 and his heart rate shot up to 150...
We had some nerve-wracking moments and then they rushed us to a room.
His fever stayed high all night last night.
They took blood for cultures. The prelimanry finding is that he has a Staph infection.
The theory is that it is coming from his port.
They want to take his port out ASAP...but, his platelet count is too low.
He received 2 bags of blood today and will recieve 2 bags of platelets at 5 am in the morning. If his platelet count is high enough, they will take him down and remove the port in his chest. The surgery is scheduled for 9 am.

He has been on constant antibiotics and Tylenol and he still has a fever! :(

We are continuing the Neupegen shots in hopes that it will help boost his white cell count.

Please pray for Stuart and for healing of his body.

More specifically, that the bacteria would respond quickly to the antibiotics...and that the surgery would be smooth sailing.

Will update soon-
Thanks for your prayers and for checking in on us...

DAY 73: Back to the clinic for the day...

After getting out of the hospital a day early, I was thrilled to be in my own bed! They monitor the body's metabolism of the Methotrexate and only when it is low enough will they let you return home. I was drinking as much as I could; doing whatever would help flush things out. In addition, there is a constant 24 hr/day infusion of Sodium Bicarbonate to help the kidneys not form crystals due to the drug. When I came home, I weighed 198lbs! Three days later, I was at 182. If that wasn't highly expected, I'd be worried... but fortunately we had some insight as to why I was bloated and swollen for a period there.

Today was an eight-to-five clinic visit. It was good timning, because today I had trouble even standing up this morning. I would feel like I would black out whenever I'd transition from sitting to standing. My pulse was 125 -- when sitting still! Borderline anemic, I did indeed need platelets (level of 34 vs. 150-250 average range). So, I met with the nurse for a quick assessment and then waited for an infusion chair. Once in the chair, I got a bag a saline, a bag of platelets (lemon cream sauce), and then my brain chemo. It went well today! Only one prick in the head! There is a chance I may not have too many more of them left to do... maybe a small victory within the battle here on the horizon!

While I've not heard difinitively from my doc, I am mentally prepared for 8 rounds. I think that's where things are headed, so I've tried to re-calibrate my expecations. That ain't easy to do. Conversely, if we had started out expecting 10 rounds, and got scaled back to 8, things would be a little easier. So, lest we set too many futile expectations for ourselves... they will indeed be tested!

Candace and I need a break. We're going to do our best to get a quick weekend roadtrip to Destin if possible. I think hitting the pause button over some fresh air will be prudent, as we've been burning the candles at both ends for many months now. She has been forced to invest so much in me... not just time, but significant emotional energy as well. A few days at the beach can work wonders to replenish the soul. Even better, we met in Destin in 1998 so it's always great to go back to 'where it all began'...

We met another relatively young couple at Emory who is battling Lymphoma as well. The husband was diagnosed about 9 months ago, they treated it... and it came back as a different type of Lymphoma. Twice. I don't know too many details, but his situation does scare me. I don't like to entertain the idea that this 'thing' could change forms and come back. No, no, no.

Candace met his wife last week when he was in a room two doors down from me in the hospital. He had contracted an infection, presumably due to his port, and his body was not strong enough to fight it. They made a tough call to remove the port, despite his platelets being dangerously low for surgery. Then a miracle happened: the medicines started beating the infection and he got well enough to be discharged. Small victory in the larger battle... ahhh, yes. Praise God for all of this.

Someone out there always has it worse than you do... ALWAYS. Think of them, and you will become grateful.

DAY 67: Red Blood Cells and Cinnabon...

Te first part of this cycle was an eventful one. I got my dozen or so interruptions throughout this first night, which didn't permit too much rest. We were changing over drugs, hanging various pre-chemo and chemo delights, drawing blood, giving eyedrops, swalling pills, going to the bathroomo, testing pH. Just the basics.

We were told early in the morning that I had become anemic and would therefore need two bags of red blood cells. Mmmmm. My first experiene getting blood. I was given Tylenol and Benadryl as pre-meds to prevent any allergic reactions.

The green bag is Methotrexate chemo (it is light-sensitive and has to be covered), the clear bag is Sodium Bicarbonate (to keep the chemo from crystallizing in my kidneys), and the red bag is O+ red blood cells.


I was craving a cinnamon roll after breakfast... and the cinnamon roll fairy brought us CINNABON!!! - with extra frosting, I might add. I honestly believe the last time I had one of these was when I was 16 years old and worked at the Bellevue mall in Nashville at 'Electronic Express'. Wow. It was dec-a-dent and I savored every single bite. Cannot make a habit of these things, I am well aware...

Later in the day, we had to get the intrathecal (brain chemo). It was a little scary time time because it was a new person, who I quickly got tht feeling didn't really know what he was doing. I like to think that the people sticking chemo in my head via needles are nothing short of experts. So they prepped me and stuck me and stuck me and stuck me and just couldn't seem to hit the sweet spot.


We showed them a photo of one previous time when things went smoothly, as an attempt to try to guide the needle placement. It worked and we accomplished the procudure in the end. Whew. Glad that's over... until the next time!

Here is shot of me sporting my "Chili Tru-Rap" from Wal*Mart for $1.44. It was a Christmas present from Dr. Matt Everett, which I know looks totally riduculous... which I why I wear it with pride.


The lady four doors down from us passed away yesterday. I don't know anything about her, but her family was here most of the day congreagating in the hallway, and so we knew things were not good. Please keep in your hearts all the people who fight this fight, or any other health battle, and don't have the ourcomes that they hope for. It's really sobering -- and sad.

DAY 65: Kick-off of Round 4... here we go again...

Well I just had my port accessed and am ready to get hopped up on round 4 drugs. This round is the 'B' round, which will involve Rituxan, Methotrexate, and Cytarabine. I will also get the latter of those two drugs in my brain-port (again). The B-round was rougher on me last time around, but maybe this time there will be a learning curve and my body will handle the drugs a little better. Hey, nothing wrong with optimism, right? I expect to be here through the weekend, until Sunday. But plans are always subject to change.

This morning, instead of getting here at the crack of dawn like I normally do, I decided to take my time. (Rationale: the chemo orders take until late afternoon to get completed anyway, and so what's the rush?) It ended up being a smart move, as the hosptial admissions process was jammed like never before and patients were practically backstabbing staff to try to get room assignments. I even got to sneak out to my favorite restaurant for lunch while I was waiting (Taqueria del Sol). Mmmmm. Fish tacos and cheese dip from Taqueria are, in fact, the same meal I'd request as a last meal on death row. That's a little melodramatic, I recognize, and am not implying I'm anywhere near death row this week. It's bad, but not *that* bad!

Luckily, Dr. Flowers ('my' doctor, the Tiger Woods one) is making rounds this week, which means I got to see him once a day. I grilled him on the 6 vs. 8 question just now. He told me that he had not decided yet and that he wanted to wait until my next PET/CT scan (which will be sometime in the next few weeks.) I get a feeling that he is leaning toward recommending 8 rounds... but he is going to reserve his thoughts until later. Geeee! Come on, people! Puh-leeease! There have been studies on the effectiveness of this chemo for Burkitt's Lymphoma, but most have involved 8 cycles. That's what we're up against...

I'm in a great room with a great view - again. The sunsets are great and they feed my soul tremendously. I can even see the skyline from my bed this time. Wow.


A new creature comfort I brought with me this time was a radio. I am listening to the news right now, and keeping in touch with the outside world a little better. It's nice to have some classical music in the background, too. Maybe we can use the radio to drown out some of the drone of the infusion pump clicking. One of our close friends has let us borrow her sound machine. It has been a life-saver. I need to return it and get one for our own! I won't be able to do without.

Lest I waste hours and hours of time, I've committed to really laying off computer/internet use for the season of Lent, but I will do my best to keep things updated this week - as it will probably be a fun one. (Thought to self: is it ok to watch Celebrity Apprentice and American Idol, still??? Geesh. Drivel.)