Round 5: Brack - 5, HL-0...and a Few Things I'd Rather Do Without

Another good round. A bit more up and down later in the round than in previous rounds. I started back on Prilosec daily at the beginning of this round and the occurrences of queasiness or the metallic taste seemed to decrease. My lowest score was on day 7 (Friday) at an 87 and well below my running average for that day of the cycle. It was poor choices on my part, plain and simple. I put off lunch for a meeting at work and never caught up. All I could push down at dinner was plain rice and Newman's Own lemonade (it's the least sweet to me). And the day before that I had a dinner of RoFo (Royal Farms for the uninitiated) chicken and Ben and Jerry's Cherry Garcia. I had a craving and you'd think I was pregnant. Bottom line…dumb idea. And this was not best timing since Jen and I traveled on Saturday for 4 days for kid commitments. Travel, for the second straight time, caught up with me and my body and let me know it. Twice this week my temperature spiked to the high 99s so I started on Levaquin (Levofloxacin, 500mg) in case I have a bug. Interestingly, if you look this medication up, the Mayo Clinic website description says that it's an antibiotic used to treat bacterial infections all over the body… also to prevent an anthrax infection after a person has been exposed to anthrax AND this medicine is also used to treat and prevent plague (including pneumonic and septicemic plague). So I've got that  going for me!

Even though it's been a decent round I would be remiss if I didn't mention a few things (side effects?) that occasionally drive me a little crazy. I got the idea when I was talking with our friend Danita last week. She is making great progress with her breast cancer treatment and should be done with her chemo rounds by now - GO Danita! She and I were comparing notes so I decided to keep track of a few things that I can't wait to put in the rear view mirror. Here goes:

• That metallic taste in the mouth 
• Numbness of the sides of my tongue
• Tingling or numb fingertips
• Runny nose at some point every day
• Raw nose, inside and out, that hurts to wipe or blow
• Mouth sores and random cold sores
• Walking 50' and losing my breath (thanks Bleomycin)
• Being cold often, especially my sizable dome, and not being able to shake a chill
• Retaining water (hands and feet swell) at randoms times
• Really dry skin (yes I've been using lotion) and constantly chapped lips
• Random pains that come and go over a 24 hour period (see example below)
• Random coughing bouts
• Difficulty trying to swallow absolutely nothing
• Not being able to take a cleansing breath without coughing
• Acute, mild pain going to the bathroom (#1 and/or #2, that's the nicest way I can say it)
• Insides of both elbows feels like I have needles sticking in them (I guess I miss chemo so much!)
• Waiting to sweat out a low grade fever
• Thinking about the ER each time my temperature goes over 99.5 (only three times so far)

I try not to focus or whine about any of these and just roll with it. For example, on day 6 I felt like someone had punched me in my ribcage just under my right armpit. I started laughing about it and that caused me to cough, which in turn caused more pain, which caused me to laugh…The pain went away a few hours after a couple Advil and didn't come back. I'm still laughing about it.

Other than that I'm doing pretty well.

Much Love To You All. And my deepest appreciation for all of the love and support this year. It makes it so much easier to keep that positive outlook.

And a Merry Christmas, Happy Hanukkah (just ended) or otherwise joyous celebration this season. Tell your families and friends you love them. We are looking forward to 2013 in so many ways.

Chemo Treatment #5 - An Early Christmas Present!

"It's Clear" - two of the most beautiful words I've ever heard after our wedding vow, "It's a girl, "It's a boy" and my brother telling me he was cancer free.

Lauren, Dr Seifter's patient service coordinator, called me while I was on the way to treatment. I missed her call and was intrigued that she was calling a half hour before my appointment time. I was hopeful after reading the PET/CT report yesterday but I needed to hear it from Dr. Seifter before believing anything I could read from the report. The conversation with Lauren was brief, entirely uplifting and funny at the same time:

  Lauren: Mike, Dr. Seifter wanted me to tell you that it's clear. Your scan is clear. I told Dr. Seifter 'I think he already knows.' 
  Mike: Thanks so much Lauren. I thought the news was good when I read the report, but not that good. See you in 30 minutes.

"It's Clear." I didn't imagine I'd hear that. I read the words at the end of the report that said "Good response to therapy..." so I thought I was doing well based on my white blood cell counts being where they should be. All of my enlarged lymph nodes have either "markedly diminished in size or even resolved..." They're gone, not possible - already? Absolutely! And I really appreciate that Dr. Seifter wanted me to have realtime info from him as opposed to waiting until the appointment.

I was 15 minutes late to my appointment and arrived with a smile on my face. I was planning to go to work afterwards so no one accompanied me today....not for lack of volunteers between my buddy Sean and my dad. First was the consult, where Dr. Seifter also had a smile on his face. Good news is hard to contain. My PFT score, while lower than the previous two tests, is still fine. The option here is to quit the Bleomycin if my lung performance deteriorates to where the score drops too low. Then on to the checkout where, as Dr. Seifter remarked, there's not much to check out!  My blood pressure continues to be good at 110/80 and my weight is steady. So we will continue with the treatment as planned. Time to kill off all of the residual Reed Sternberg cells to be sure I am cured. My new hope is that I continue to respond to ABVD they way I already have.  And with no further adieu, here's the PET/CT report.

PET/CT #2 Radiology Report

Anna and her son Chris were working in the chemo room today - a great team. I was the first person in this morning and it was not overly active with 4 other patients in this morning. My blood work was first, as usual. My WBC was 1900, the lowest measurement yet. Given that it was only 11 days since the previous treatment, this is not unusual. And my RBC (for you Ellen) is still holding steady at 4.44 so my energy level is still decent. Everything else was routine. I was out by 1pm and heading home since the meeting at work finished early.

It's been a great day everyone! 
Much love to you all.

Round 4: Brack-4, HL-0...and some cool extras

Round 4, the shortest round at 11 days, was a busy 11 days with PET/CT #2 and PFT #3. Fortunately it was mostly uneventful in terms of chemo effects. Days 4 and 5 were probably the worst two days I've had on chemo yet. Both days I had achy joints, less  energy, and a spotty appetite. I had to force myself to get up and stay active when I felt like laying on the couch. The metallic taste in the mouth gets old quick. I probably sound like a broken record on that account. And my fingertips occasionally tingle, the sides of my tongue sometime feel numb,  the top of my head is whiter than fresh fallen snow, and now and again I can't swallow larger bites or large gulps of liquid as easy as I used to…other than that I'm doing pretty well.  As a friend from work said last week "…be honest, don't tell me everything is peachy."  Not everything was peachy in Round 4. My good friend Eileen felt the same way on the same days as me, so we commiserated. Below is the latest graph. The graph was getting busy with all rounds on one page, so I am now showing just the latest round with the running average.

Round 4 Score

I also had my second PET/CT. I had the same tech as last time and he sent me home with the images from both scans as well as some knowledge about the software that I can use at home to view the images/movies. The results look promising and the report looks even more promising but I need to wait for Dr. Seifter to say the magic words. Below are some images from both scans. Take a look to compare the images from both, particularly in the neck region where the crosshairs are. Pretty cool.

PET/CT #1 Image

PET/CT#2 Image

One really cool thing happened during this round. My dad, who has never sent an email to anyone other than family or someone connected to a great fly fishing destination, struck up an email conversation with the President and Founder of HeadBlade, Todd Greene. He told him about our battle to beat Hodgkin's Lymphoma and next thing you know Todd makes me the HeadBlade "User of the Month". Here's a link to the really cool writeup:

Thank You Todd & HeadBlade!

You know it's a solid company when they offer a great product, fronted by a sincere and accessible owner, and shirt sizes up to 3X - for us larger than normal guys. Thanks for everything Todd, particularly the kind words, positive thoughts, opening your community up to my story, and the honor of being a recognized HeadBlader. Much health, happiness and success to you and your team at HeadBlade.

Last but far from least, I stopped in to my local a few days ago – The Judges Bench. Mike, the owner and a beer/single malt/cognac/bourbon aficionado (my kid of guy!) graced me with a small snifter of 50 year ofd cognac. Wow, what an expression! I'm sure it's doing it's part helping to get me cured.

Chemo Treatment #4 (+ 4 days)

Chemo treatment #4 went well on Monday. Mom and Dad accompanied me for the 10:30am appointment. Prior to leaving for the appointment they gave me a small present - a new HeadBlade shaver.

My New Favorite Toy

It works surprisingly well and takes about half the time as my regular 5-blade razor. I'm on a weekly head shave cycle so it's not too onerous to shave a 24" dome. And once it's clean I am usually donning one of the two cashmere stocking caps my sister Les made for me. They are as comfortable and warm as a stocking cap can be - thanks sis! Another decent side effect is that my beard is not growing nearly as fast so I only need to shave my face every other day.

We arrived on time for the appointment and immediately were into the routine with Dr. Seifter and the Q&A followed by a quick checkout. My blood pressure is normal and weight is down just a few pounds. It's then straight to the Chemo facility. Anna and her son Chris were there so I was glad mom and dad got to meet them. The CBC this morning showed that my white blood cell count was 2900, still where we expect. I forgot to get a copy so I'll get the trend data at the next treatment. It was a fairly busy morning in the unit with 4 patients getting chemo the entire time. We were in the facility for just less than 4 hours and then heading home.

By late afternoon on Monday I was more tired than I remembered from previous treatments. And the metallic taste, tingling tongue, and queasy stomach (am I hungry?) were all back. Time to settle in for a week or so in this mode. And I feel pretty much the same today - tired and tired of the persistent metallic taste. It's been a struggle to get 8 hours of sleep due to work and getting up in the middle of the night. I need to work at getting to bed earlier. As you can tell my humor is dwindling a little with the fatigue. No worries though, Jen reminds me often enough that I'm still a smart ass at home.

I've also updated the Medical Timeline page to include the remainder of my appointments as they are now scheduled. PET/CT #2 is on Wednesday (05-Dec.) and I really hope to see less (fewer and smaller spots) than we saw on the first scan.  March 15 is the last scheduled chemo treatment - can't wait.

Much love to you all.

Round 3: Brack 3, HL Bagel...and Some Thoughts on Being Thankful

Alison asked me yesterday "what's bagel mean?" when I was telling her some college football scores. I simply said "zero". That's how I've referred to a scoreless effort or a shutout for years. So Hodgkin's Lymphoma is still a big ZERO after Round 3. I continue to progress better than anticipated. My general state of being, energy level and appetite are doing really well. 

Due to the Thanksgiving holiday this round has the longest duration (and recovery period) at a total of 17 days. The flip side is Round 4 will last 11 days - just enough time to get back to normal before starting over. Round 3 was punctuated by a business trip to LA that took some getting used to. I had a slight scare for the first time during chemo treatment when my temperature strayed more than a degree outside the high side of my normal range (97.6 ± 0.2) in the middle of my trip. Fortunately I was paying attention and managed to slow down just in time. Since then it has been smoother sailing. My daily scores are below.

Round 3 Scores

This Thanksgiving I have found so much to be thankful for, and have taken pause more than any other time in my life to reflect on how fortunate we are. For my loving and endlessly supportive Jen, Chris, David and Alison I am truly thankful.  For the unconditional love and constant support from my mom, dad, brother, sister and our extended family I am truly thankful.  For our wonderful friends, who are as close to family as a person could imagine, I am truly thankful. For the exceptional care providers who help my family get through each day and week, I am truly thankful. I could go on...

Earlier this morning Jen and I were watching CBS Sunday Morning, one of our favorite weekend "news" programs. The last story on the show this morning was an Opinion piece from Joel Sartore, a National Geographic photographer. Less than a minute into the piece Joel showed a photo from his family gathered around the dinner table. On the left side of the photo was a young man with the same hairstyle that I am currently sporting. I immediately said to Jen "he's fighting cancer." As Joel continued his commentary we learned that his 18-year-old son Cole was diagnosed with Stage 3 Hodgkin's Lymphoma in August of this year. More than any time in my life I truly understood Joel's (and Cole's) perspective. And we soon heard, Cole's fight is in addition to his mom Kathy's ongoing fight because she had a recurrence of breast cancer early this year. As Joel stated at the link below... "Though it may be hard to believe, the Sartore’s are actually thankful."

He continued to talk about how many cancer survivors there are around us. And how fortunate we are at this time in history that medicine has advanced to the point where we can talk in terms of cures. And at the end of the segment I also immediately recognized that 200 ml bottle of red Doxorubicin, aka Adriamycin or the "A" in ABVD chemo regimen, the first chemo drug I get each week that looks like hummingbird food.

The video of Joel's commentary is not yet up on Joel's website or the CBS website but you can read the transcript here:

http://www.joelsartore.com/were-all-surrounded-by-survivors/

Last but not least, a shameless plug for a book I read last week. Kellie Larsen Murphy, the undisputed queen of white chocolate chip cookies (that she overnights to me during chemo treatments!), is also an up-and-coming author. Kellie is a dear friend since college and just published her first book. A Guilty Mind is a murder mystery with a touch of psychological thriller. It kept me guessing until the last few chapters and was thoroughly enjoyable. It's available through Amazon, Barnes and Noble and via the popular e-book outlets. Happy reading. 

Chemo treatment #4 is tomorrow at 10:30am. Mom and dad are going to accompany me again and I look forward to putting one more treatment in the rear view mirror.

Much love to you all.

Home Sweet Home

I traveled to LA for business this week and it was a challenge at times. Even though I took precautions like wearing a medical face mask on the flights, taking Airborne supplements, and drinking plenty of water, I now know that I got worn out. Both United flights were full and fortunately I didn't notice any coughing or wheezing during the flight. And I don't know what pollen is in air the but my sinuses have also been bothering me for a couple weeks.

With two full days of meetings, dinners in the evening, and hotel beds and pillows that aren't what they used to be, I didn't get the proper rest. I also ran a slight fever for a few hours late yesterday - yes I took my thermometer on the trip. Fortunately a couple Advil, a liter of water, and an hour of rest did the trick. I was able to go out to a fun dinner at a great cafe in Marina Del Ray with Meghan and her college roommate Annalisa. She's the oldest daughter of my good friend Big Murph. With a good meal in me I was able get a reasonable night of sleep.

Lesson learned.

Chemo Treatment #3

It was another very good, full day for lots of reasons... (1) one more dose of chemo moving me closer to being cured, (2) spending time with family, (3) impromptu meals with awesome people both young and closer to my age, and (4) seeing and reconnecting with long time friends.  

Alison and Jen accompanied me today since Alison had a day off from school. We started with her 8:30am physical therapy appointment to improve her arm positions on her swim strokes. Jen and I had coffee and breakfast at Atwater's cafe while we waited for Alison and then all three of us headed over to my 10am chemo appointment not too far away. 

We're into the rhythm now that starts with a quick question and answer session in Dr. Seifter's office, followed by a review of the most recent blood work, and finishing with a checkout in his exam room across the hall. The numbers we are watching continue to be good starting with my blood pressure at 120/70 this morning. The white blood cell count is at 2100 (slightly up from the last CBC of 2000) and remaining in a good place. And I noticed the red blood cell count is actually up slightly from the last CBC. I meant to ask a question about the granulocyte/lymphocyte counts but forgot and will follow-up at Chemo #4, which is on the Monday after Thanksgiving, a little more than two weeks away. My good friend Eileen will also be in for chemo that day so no doubt we'll  be texting each other as chemo buddies.

My most recent CBC is below and the trend data for all prior results is just below that.

CBC on 12-09-12

CBC Trend Data

Five others were in for treatment today. A couple people were there for 3+ hours like me, and the other two came in for short treatments and were gone in under an hour. My treatment ended right around 1:30pm, just after I received a text from one of my most favorite young women, Erin. So this can only mean that it's time for a trip to Miss Shirley's for an awesome late lunch. It's only 10 minutes from the chemo facility and a Southern style diner/restaurant. Jen and Alison are psyched because we try to eat there when we are in this part of town - usually for a swim meet. And it was a chance to have lunch with three incredible college students that we just love.

Erin is the same age as my oldest, Chris. And Erin rousted her older brother Ryan to provide transportation. The two of them are just spectacular, loving individuals who bring a smile or twenty to your face whenever they are around. And Erin was able to bring her roommate Caitlin, who we have come to know as yet another wonderful young woman. All three swim at Loyola University and were available for lunch. And we had such a fun time laughing and eating really good comfort food.

When we got home we were treated to a visit from another long time friend, Gabby who was up from Williamsburg today, in the area on business. Her husband Rick and I are friends and fraternity brothers from way back and it was great to see her. She stopped in for an hour or so and we caught up and shared photos. She's spending the night on the north side of town, here for n overnight stay  to watch her son Sam play in a lacrosse tournament tomorrow.

After an unusual 1-hour power nap  (unusual due to the anti-sleep effect of the corticosteroids coursing through my veins) we were off to dinner for a casual Italian meal at Luna Bella with John and Elaine. I work for John and it's just refreshing to be able to enjoy some quality time outside of the office with both of them. Another very good meal accompanied by great conversation. And one of things I am learning is to not over eat on chemo day. So far so good.

One of the many upsides to this slight diversion in my life is the amount of time I get to spend  more time than the usual with my family and friends. The depth of personal character of both close and extended friends continues to amaze me. From Deno's solidarity head shave this week (complete with photos on Facebook), to a quick call from Cheryle, to the usual emails or texts from the same core group asking how chemo day is going, to the weekly emails and calls just letting me know of the thoughts and prayers flowing my way, to Ellen's tips and advice that are making my treatments easier to adapt to (nice tat Ellen!), to the weekly chemo comparison with Eileen and Mitch, to random work email from a cancer survivor who appreciated a smile from me on the elevator and offered some good advice, to the comments from people I don't even know (thanks Kay and Steve)...the outpouring of love continues to amaze me.

My love to you all.