DAY 124: The fever that won't go away...

Well, this week has been a crazy one, unlike no other round. I have been to Emory 7 out of the last 9 days. I am still getting fevers every day and we can't seem to figure out why.

I got a blood transfusion on Sunday, Platelets on Tuesday (they were at their lowest level ever), took blood cultures from a total of 5 different sites Saturday, Tuesday, and Wednesday (to see if they grow out an infection), IV Cefepime (an antibiotic) yesterday, IV fluids yesterday, a nasal swab for RSV (a full-on 4-inch nostril assault all the way down into my throat!), and a prescription for Levaquin (another antibiotic).

The good news: my white blood cells have come back are at normal levels! This means I'm not a walking piece of duct tape, as I call it.

This fever has perplexed us all. I seem to get it later in the day and overnight, and it moderates in the morning. The other night, it was 102.8. We called in and they told us it was ok to take Tylenol (a no-no when whites are down). When I did, I set my gag reflex off and sent dinner into the sink and bathtub... oops. I ended up sweating away the fever and got some rest. Each night seems to replay the same fever spike.

Back to the clinic tomorrow for more blood work, tests, and hopefully some answers!?!

PS- when the nurse practitioner described the nasal swab to me, she said, and I quote, "Oh, it's not bad. It like this wire that goes up your nose and then hooks down in your throat. It takes, like, two seconds."

Are you kidding me? My heart started racing and I became hot and flushed that I had to lie down to regain composure.

I replied, "Look, you have to promise me you will never use these two words again when describing a nasal swab: 'hook', and 'wire'. Images of some sort of metal fishing hook pulling out my esophagus through my nose is all I could envision."

She agreed to change her spiel, and I feel good about saving people from the horrible experience I had, due to such a poor choice of words!

DAY 119: Fever update...

The fever slowly came down last night from 100.5 into the 'safe' 99.5-100.0 range. Thank you all for your prayerful support. There is no real rational explanation for why it came down. I am thankful we were able to spend the night, not in the hospital, but in our own home. Yes.

I went to Emory clinic first thing in the morning today for bloodwork, and to do some blood cultures to see if anything grows. I also got put on another antibiotic at home, which brings the total to five of them.

Tonight, a few hours ago the fever spiked to 101.4. This is nearly a whole degree above the 100.5 cutoff where they typically bring you into the hospital. We called the oncologist on-call on our Bone Marrow Transplant team. He told us that they think my white blood cells are staring to grow back, which can cause fevers. As we already have blood cultures underway and added a new antibiotic, he again suggested that we try to ride the fever out. Since I don't have chills or rigeurs along with the fever, he suspects it may just not be an infection. I sure hope this is the case.

While we are a litte surprised we were advised to simply watch and wait, the fever is slowly coming down... bit by bit. Thank you, Jesus. He is the ultimate healer and can do anything. I find rest and comfort in knowing that He has me in His hand and does all the heavy lifting in this journey.

I am running a fever. Please pray.

DAY 117: Neutropenia and nosebleeds...

Well we have raised more chunks of change for the Lymphomathon! How great! I am so thankful to all of you.

I am enjoying a series of nosebleeds... the kind that start spontaneously (out of both nostrils sometimes) and flow like the Nile. A normal platelet count of 150+ would do the trick, but mine was 26 yesterday. Got a bag of platelets transfused, but I think that only bumped me up to 30-35.

The bloodwork also confirmed that I am neutropenic, so my white blood cell count is negligible, as expected. I haven't left the house today and have been wearing a mask constantly. Feels like being on house arrest sometimes. It beats a 104.6-degree fever and an unplanned hospitalization and unnecessary surgeries, no doubt! It's all about trade-offs.

It was on my last B-round that I got the infection and it was on the Friday of week 2(i.e. tomorrow). So psychologically, if I can make it through the weekend, I will be emerging from this patch of woods. Let's hope that happens! Prayer or 'good thoughts' are welcome in this area.

Back to the clinic tomorrow for a 7am lab appointment and transfusion if needed. Starting the day off right. Let's roll.

DAY 113: Rounding third...

I made it home from Round 6 of chemo and am relaxing nicely in my comfy chair. Today has been really nice-- we were able to go to church this morning, reconnect with some friends we haven't seen in several weeks, and grab a nice lunch. Even better, my father came down from Nashville to help for a few days and having him here is wonderful. I am so happy to have him around.

We had about as uneventful Round 6 as one could ask. No real stories to report. My kidneys seem to do a good job metabolizing the Methotrexate down to a level that allows them to send me home. YEAH FOR GOOD KIDNEYS! The name of the game is hydration: keep things moving through you as quickly as possible.

This past Friday, I found out there was another Burkitt's patient getting the same chemo as I am, and he happened to be on the same floor as we were. What's more ironic, is that he is also a 31-yr old male. Candace and I introduced ourselves and tried to offer whatever words of encouragement we could-- they are on Round 3. The best part was repeating over and over, "Yeah, I know exactly what that's like -- and it sucks, doesn't it!!!"

Thank you to all the generous givers out there who are supporting the Lymphoma-thon. We collectively raised $1,000 and that makes me very proud. I can safely say that this will be the first step in many ways in which I hope to support efforts to bring help and awareness to a clear need. Having a cause is easy when something hits this close to home, right!?

Back to Emory for labs and my Neulasta shot tomorrow at 7:30am. Please-- pray for NO INFECTIONS! If I can make it through this week and next with no infections, I think it will be a huge milestone!

Thank you all so much for reading...

DAY 107: Round 6 & an option for Lymphoma support...

I check back into the Emory 'hotel' as an inpatient tomorrow for round SIX (of EIGHT). Unfortunately, my body still hasn't really recovered from the last round and so I'm a little disappointed, but I guess it's playing out like the doctors said it would. This is my B-round, which means it is the stronger of the two and I really, really, really hope we don't have any infections in the coming weeks. To be candid, that's what scares me the most these days: another infection. That would mean getting my second port out (and a third line put in somewhere) and having to be put on all those powerful antibiotics. Fevers and chills again... noooo thanks. So please pray this round comes and goes with no infection or curveballs.

Below is some info that I want to pass along from Candace's blog regarding a local Atlanta event coming up that specifically supports Lymphoma. We are well on our way to raising a good chunk of support, thanks to all of you!

(From Candace's blog)
Ten years ago, Stuart's chance at life would be very slim. Today, because people have supported research for lymphoma, Stuart has a great chance of living a cancer-free life.

If cancer research speaks to you, come walk with TEAM SMARTT to show your support. Raise some money, give some money. If you can't walk, join the team and help raise money in honor of Stuart and all those who have struggled with this battle and who will struggle with this battle.

The Lymphomathon is non-competitive 5K walk where survivors, family, friends, community and corporate teams walk in honor and in memory of those whose lives have been touched by lymphoma. Over half a million people are currently living with lymphoma in the United States -- the most common blood cancer in the United States today and the third most common childhood cancer. Funds raised by participants will support the Foundation’s mission of eradicating lymphoma and serving those touched by this disease. (facts about research and lymphoma are listed below)

Event Location:
Wesleyan School (Norcross)

Event Schedule:
Registration 4/25/2009 9:00 am - 10:00 am
Walk 4/25/2009, 10:00 am - 12:00 pm

Fees:
Free: No Fees

To find my personal Lymphoma-thon page (to give donations or to join) go to:
Candace's Lymphomathon page

You can also go directly to our "Team" page to register to walk or to make a donation. Team Smartt page

Thank you for your help and support!

For those of you who are WALKING with us, we will be wearing lime (or a light green) shirts. Lime green is the "color" for Lymphoma. (Think pink = breast cancer)

If you have any questions, just send Candace a comment via her blog.

Lymphoma is a type of blood cancer that occurs when lymphocytes--white blood cells that help protect the body from infection and disease--begin behaving abnormally. Abnormal lymphocytes may divide faster than normal cells or they may live longer than they are supposed to.

Lymphoma may develop in many parts of the body, including the lymph nodes, spleen, bone marrow, blood, or other organs. In Stuart's case, they found his in the appendix after an emergency appendectomy. They also saw two other tumors - both in the small intestine. The problem with blood cancers is they move, they flow around freely. Wherever the blood goes, these cancers can go, therefore it is very different from having a stationary tumor affecting one organ (breast cancer, stomach cancer, lung cancer, testicular cancer, etc.)

There are two main types of lymphomas: Hodgkins (the most common) and Non-Hodgkins (all the others). Stuart's is a type of Non-Hodgkin Lymphoma called Burkitt's Lymphoma. It is very rare (on 100 cases a year in the U.S.) and one of the most aggressive types (they told us if we did not go through with treatment, he would be dead within 6 months).

Lymphoma is often called the "Rosetta Stone" of cancer research because it has helped unlock the mysteries of several other types of cancer. The Lymphoma Research Foundation funds some of the most cutting-edge research to find a cure for lymphoma. Some promising research areas are:

New antibody treatments, which act like guided missiles that zero in on specific targets (antigens) on the lymphoma cells. Stuart takes one of these called Rituxan, which was researched and added to treatments only in the last 10 years. Rituxan has increased chances of survival by roughly 10 percentage points.

Vaccine treatments, also known as personalized active immunotherapy, that stimulate the immune system to attack the lymphoma

Profiling tumors by examining the fingerprint-like pattern expressed by genes, thus aiding in prognosis and development of new treatments. At first, Stuart was misdiagnosed with intermediate grade Diffuse Large B-cell Lymphoma. Thanks to Vanderbilt and Emory, they decided to do a 2nd diagnosis using this new "gene-expression" technology (called a FISH study). He was then diagnosed with the correct type of Lymphoma - Burkitt's. It is VERY important to get a correct diagnosis so the cancer can be treated appropriately.

Had Stuart been given the chemo initially prescribed for his initial diagnosis, he would stand a 0-30% of overall survival.

DAY 99: Marriage weekend...

Some friends told us of a great marriage conference/seminar coming to Atlanta this weekend and we had put it on our calendar sevaral weeks ago, not really knowing if we'd be able to physically attend. Well after several crummy days last week, I woke up Friday feeling purdy darn decent (I would call it a minor miracle, in fact) and so we ventued out to the conference.

It was a weekend dedicated to 'loving your spouse like you mean it' and giving your absolute best to your marriage. What made it even more enjoyable was attending alongside two other couples, with whom we are very close. While not everything we heard was new or ground-breaking, sitting alongside your spouse and focusing on nothing other than making your marriage outstanding is a wonderful thing and it pays great dividends in so many ways.

One part that I initially thought was quite awkward was that we were to write a love letter to our spouse. I mean, how contrived is that... it's supposed to be natural and unprovoked, right? Well the only problem was that I cannot tell you the last time I actually did so -- and so I'd say this venue would be just fine.

It was sobering to realize just how hard it is to remember specifically what you were feeling when you first fell in love, even if only ten years ago for me. Layers of life, grief, and time seem to pile on and obscure it all. The good news is that memories eventually started to come back to me with force and then putting words to them became very effortless.

I am as in-love with Candace today as much as I was the moment we met and I first fell in love with her back in 1998. She is a one-and-only divine gift to me, who deserves the VERY BEST I have to give. She is my beloved and it's great to spend time reminding each other of this truth.

Back to the clinic tomorrow for lab work and intra-chemo chemo. I suspect my counts are approaching the nadir, which means I will be doing my no-infection dance tomorrow night if any papparazzi care to try to catch a glimpse from my street corner.

DAY 96: Spring is here and I can prove it...

One of the unintended casualties of this chem-athalon was our yard, and more specifically our flower beds. They had once been utilized in their full intended glory for flowers and plants, but had devolved into rocky, hard, barren spots that really deserved not a second glance. Well this all changed when some, what I'll call, 'yard fairies' descended on our lot and made some sweeping changes. Wow. I am so grateful for those who put this project together and got their hands dirty to make it a reality.

Every time I pass to or from our front door, or sit out on our front steps, I now have something to enjoy.

PS- I think the four-legged yard fairy was in charge of watering.