Hello 2013 and Goodbye 2012

Happy Last Day of 2012! We are in Bethany Beach with my mom and dad to celebrate New Years. Our friends, the Sheas, are down here as well: their place is just down the road. My goal #1 for today, and my New Years resolution, is to get some color on my pale head. As I look at the picture below, I can hear my cousin Miah telling me I should put a lightbulb in my mouth to complete the picture!

Bethany Beach...survived Sandy!

Long Lost Relative?

2012 was a bittersweet year for us. The year started with a promotion, was punctuated with a few trials and tribulations with the kids, and then Hodgkins' Lymphoma introduced itself to our lives. However, we should all count our blessings that Armageddon was avoided when the Mayans incorrectly predicted doomsday this month. Even though it's more likely that we have no idea what the Mayans were really getting at. I was prepared though…anyone need a new pair of size 15 purple Nikes? Only worn once!

2013 looks promising from this vantage point. I plan to be cured of HL by mid-spring. Then Chris will graduate from JWU culinary school (baking and pastry) in May. David will head off to Union College (he was accepted early admission) in the late summer. And Alison will conquer her senior year and figure out where she wants to go to college. Yes we are looking forward to 2013 for so many reasons.

This round of chemo started rough but eventually got much better. The past couple days have been very good days. I slept like a rock last night as I usually do when I can hear the ocean. I think the initial difficulty in this round had a lot to do with the fact that I was fighting some kind of bug. I was also a little out of sorts becuse I haven't been on a regular schedule during the holiday break. My temperature is finally back to normal and I am doing well. 

Happy New Year with Much Love.

Chemo Treatment #6 - Half Way Home!

One of my best friends, Big Money, told me yesterday that my rapier wit was not coming through in recent blog posts. So we'll start this one off with a joke:

A group of managers are given an assignment to measure the height of a flagpole. So they go out to the flagpole with ladders and tape measures, and they're falling off the ladders and dropping the tape measures. The whole thing is just a mess. An engineer comes along and sees what they're trying to do, walks over, pulls the flagpole out of the ground, lays it flat, measures it from end to end, gives the measurement to one of the managers and walks away.

After the engineer has gone, one manager turns to another and laughs: "Isn't that just like an engineer? We're looking for the height and he gives us the length!"

So now that we have some humor on the table, time to get down to business. Today was Chemo Treatment #6. Only 6 more to go! Unfortunately HL got off to a good start in this round and I have some ground to make up to win this round. I've been fighting a low grade fever all week that's been chipping away at my energy. So I was worrying ahead of time that this round might be more difficult than the others. I sent a heads up email to Dr. Seifter mid-week and his reply was:

Hi Mike,
You are doing it all correctly. If you start to have shaking chills or a temperature over 100.5, let us know because you should have a CBC checked and possibly be hospitalized if the neutrophil count is under 500 in the face of fever.Eric

CBC on 21-Dec-12

The pre-chemo checkout went well. Weight, blood pressure, pulse and temperature are all fine this morning. Dr. Seifter and I spent more time talking about the Raven's quarterback woes than about anything else. Neither one of us was a Cam Cameron fan and we both don't think they should put a franchise tag on Joe Flacco. Below is my CBC. Since my counts were all fine (neutrophils or "GRAN") we proceeded as planned with today's chemo.

Mom and Dad accompanied me to chemo today, thankfully. We met Nancy for the first time. She's a a part-time nurse who works full-time at the impatient cancer center at the University of MD Hospital Center. She is also qualified, professional and caring and fits in well with Anna, Dawn and Chris.


Everything was going fine until 1pm or so. I got up to use the bathroom, toting my IV pump machine with me. When I was finished I caught a chill out of nowhere. I then developed uncontrollable chills/shakes and it caused my stomach to cramp. I almost puked and then got three additional drugs (a steroid, Benadryl, and acetaminophen). I was pretty much immobilized in the chair and we didn't go anywhere for another 90 minutes. As my dad said, it was the first time he was seeing me almost getting sick since I was 5. Here's a picture of the sad sack:

Shivering Uncontrollably Under Two Blankets

I finally settled down enough to go home. I was in no shape to drive so it was great having the rents with me. Once at home I laid in bed for a an hour and started to feel better.  

Today was not fun by any account and was, without a doubt, my worst day since starting chemo - with a score of 74 . On the flip side, it's now 11:50pm and I'm blogging whilst jacked-up on steroids. And for those keeping score, here's the Round 5 score against the average score.

Round 5 Score

Merry Christmas, Happy New Year and Much Love.

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.

Round 2: Brack - 2, HL - 0

I'm really happy with how things are progressing. Round 2 has been very similar to Round 1 but a little better. I'm getting used to the rhythm and learning that, among other things, the occasional feelings of slight nausea are actually hunger pains. I have tweaked my scoring system since Round 1 to be less subjective and more data driven based on 7 factors: Sleep Quality, Hours of Sleep, Level of Activity, Meals/Appetite, Stomach Feeling/Nausea, Internal Systems, and Body Temperature. Each day I start with a score of 100 and deduct points based on less than optimal scores in each of the 7 areas. The pattern so far is that most of the first week is the "down time" in the cycle and the second week is back to normal. 

Scores for Rounds 1 and 2

I also had my second Pulmonary Function test today at the JHU Hospital Outpatient Center. While some of my trend data actually increased, the main value we're watching is my DLCO/VA. That dropped by 8% from my initial baseline on 28-Sep. It went from 108.5% of predicted value to 99.6% of predicted value. I will review these results with Dr. Seifter on Friday.

Chemo #3 is the day after tomorrow on Friday, 09-Nov. Alison has the day off and she and Jen are going to go along for the ride.

Out With The Old...

As planned, David shaved my head today. He's quite the barber. The continual shedding this week got old in a hurry. There's nothing like waking up multiple times in the middle of the night with a hairy (shag) pillow that's tickling your ears or nose.

It's a true November day outside today and I definitely notice the insulating effect my hair used to have. In my opinion the dome is not as bad as I imagined. Here's a few photos from the fun:

Before

During

After

Chemo Treatment #2 (+ One week)

Round Two is going well at the midway point, slightly better than Round 1. We’re getting a little smarter each week at figuring out how I’m responding and what to do as a result. And just as Dr. Seifter said it would happen, my hair started to fall out, little by little, on the day before Halloween…18 days after chemo started. Depending on how it progresses over the next couple days, or when I just get tired of seeing it fall out, we might just have a family head shaving party this weekend. I’ll post a picture or two when I join Big Murph, Wrigs, MO, Ritty, and others in the closely cropped hair club.

As far as my other reactions to chemo, here are a few so far. The metallic taste starts a day or two after chemo and lasts for as many as 5 days. It makes everything taste different, some things are worse than others. An occasional mouth-coating film accompanies the metallic taste and it makes most food and drink textures appear creamy. There's a few ways to minimize this, a quick olive oil rinse being a good way (thanks Rick). By day 4 I’m just tired of plain water although a little fresh lemon or lime juice does help (thanks Eileen). Fortunately lemonade tastes great all the time so we have plenty on hand (thanks Ellen). When the metallic taste fades, everything goes back to normal. During this same period there is the occasional queasiness but nothing serious so far. My appetite is still decent so I’m happy about that. One of the ways I’m measuring my daily score is by the number of Tums that are required on a given day. Although I’m not craving sweets as much (I know some of you will find that incredulous) ice cream still tastes great. And there is no desire for an adult beverage in the first week or so after chemo, oh well. Lastly, it feels good to stay active and my energy level is still high but I do get tired and need more sleep on really active days. 

I'm always reminded of those who are facing a tougher challenge than me. My sister-in-law Twila is back in Ohio to care for her mom Janet who is doing her best to beat Multiple Myeloma. She was released from the hospital yesterday and is back at home thankfully. And our good friend Danielle is back in Florida caring for her mom who has been in the hospital for several weeks now. She's just trying to heal from multiple internal surgeries but her body is not cooperating yet. Be strong and know that we love you all very much.

Chemo Treatment #2

Mom and dad came along for the trip today. We arrived early since traffic mostly cooperated so they got to take in the facility and surroundings, and talk about what to expect. It turns out that mom once showed one of her sculptures in an art opening in the outdoor courtyard of the medical facility several years ago.

Our first order of business was the 10am consultation and examination with Dr. Seifter before starting the chemo treatment. This meeting will occur each time I go for treatment. All three of us met with Dr. Seifter and reviewed my latest CBC and then asked questions. My white blood cell count (WBC) is right where it needs to be at 2.4 (x 10³ /µL), so dose #2 (including nausea meds, a steroid, and the ABVD chemo components) will be the same amounts as dose #1. This WBC also validated that the initial prescription amounts were spot on. And that was a good sign given the unusually large volume of chemo (for Dr. Seifter's patients) that was initially prescribed based on my body surface area. Other than WBC, another thing to watch will be HCL (hematocrit) that shouldn't get below 30. RBC most likely won't go down until later in the treatment cycles.

The examination was routine and my BP was steady at 120/80 again. Some additional good news is Dr. Seifter found that the left supraclavicular lymph node is smaller than previously noted and hard to find. And there was no other sign of the few swollen lymph nodes where they once were. We followed up with a few more questions, admiration of Dr. Seifter's fossils, and a quick exchange on a Vinctifer Comptoni fossil that mom and dad have. Also, the odds are I will start to lose my hair right by mid next week. How ironically apropos that the jughead may be in full view in time for Halloween! Lauren also scheduled my next pulmonary function test (PFT) at the JHU Outpatient Center on 07-Nov. Lastly, the group that provides the chemo for me is Pharamquip, part of the Johns Hopkins Home Care Group (not any sketchy compounding labs in the Northeast thankfully)

Dr. Seifter handed me the chemo therapy prescription for the day and we walked down to the chemo treatment facility. Activity today was more bustling than the previous times I remember. My impression remains that, other than an occasional pleasantry and polite attitudes, the chemo patients in Dr. Seifter's facility either sleep or keep to themselves for the most part. Other than talking with Anna, Dawn or Paulette on occasion, it's pretty low key. 

Mom and Dad Along for a field Trip

Unfortunately, when these Brackens are present, low key is rarely the modus operandi. Either mom and dad initially traded off sitting with me while the other sitting on a couch just outside in the hall. Eventually both were in the room for the final couple hours. So we were having one of our usual, low volume conversations that could still wake a person through their headphones. And one patient today, Murray, looked to be in a deep sleep with his headphones on. When he awoke he joined our conversation and we meandered all over the place from fishing, organizational behavior, our diagnoses and treatments, photography, and other topics. It was quite a pleasant an enlightening hour-long (or so) exchange. I was again reminded that I have won the cancer lottery with HL. Murray, a lawyer turned photographer following his passion, is currently on maintenance treatments (every couple months) for Non Hodgkin's Mantel Cell Lymphoma. One of his possible options down the road is a more exotic approach requiring stem cells. He looked great and had an even better attitude. I emailed him the link to this blog and he replied a little later to me on email. It was one of those times where you are left with a smile after an unplanned encounter because the finer side of humanity is ever present, just sometimes hidden from view until it's uncovered.

Dawn was my angel today and Paulette assisted as she tended to others as well. The routine was the same as treatment #1. However, this time we slowed the final drip (Dacarbazine) to avoid any discomfort. It worked even though it took a bit longer. In between work emails and enlightening conversations, I texted Eileen, our dear family friend and my guiding light through much of this. She was getting a chemo treatment at the same time as me at her doctor's facility across town. My treatment ended just past 1:30pm and off we were to lunch.

We were the last to be seated to Petit Louis for lunch just before 2pm. We had a phenomenal lunch of mussels, French onion soup, butternut squash soup, scallops, duck, with a side of mushrooms. The 2010 Alphonse Mellot Sancerre La Moussiere was the perfect accompaniment (along with two bottles of water primarily for me). I had an Alsatian apple tart and mom and dad had the pot-au-creme, a dark chocolate ganache-like custard that was rich and silky.

All in all another very good day. I was tired early in this evening, most likely due to needing more sleep last night. And I am now very thirsty like usual. Eileen recommended adding lemo to my electrolyte water because it is an alkalizing fruit - great idea!

Off to sleep, in spite of my steroid infusion.

Round 1 Goes to MB

I'm declaring Round 1 a victory for me. I am ahead on all cards and am really happy that I did not have anything more than a few minor effects like a lack of energy around day 3 and 4 and some early acid reflux. That was on me since I shouldn't have eaten that bowl of pasta with the tasty red sauce I made for Alison's dinner on the first night of Round 1. I started over-the-counter Prilosec on day 2 and will finish that 14-day plan this week. I'm also paying more attention to acid and alkaline forming foods to try to find a better daily balance. 

To track my progress I created a chemo-adjusted scoring system to assess how I feel each day. Yes, the engineer in me has created a spreadsheet to track my scores. It's a work in progress that I will tweak over the next few weeks. It includes sleep, appetite, energy level, exercise, how my internal systems are working, nausea, vomiting, and increased temperature level. All factors receive equal weight at this point and the ere is some subjectivity to my final score for the day. I"m also tracking my daily temperature and weight. My average temperature for the for Round 1 has been 97.7°F and my weight is down 4 pounds, which is insignificant for me.

Daily Scores for Round 1

I also had my first complete blood count today. Anna drew my blood at the chemo facility and I had my CBC in 5 minutes. The level of professional service I continue to receive is still beyond my expectations and I love it.

My white blood cell count (WBC) is down noticeably as expected. And so are my white blood cell type counts (granulocytes and lymphocytes). So I am now more prone to infection and will try to avoid those visibly sick people around me. My red blood cell count is not not down from my last CBC, hence the reason why I have more energy now. My mean platelet volume shows up as low but it's about where it was at the last CBC.  I have not spoke to Dr. Seifter about the CBC results yet and whether there will be any changes to the levels of ABVD as a result. I hope to see him on Thursday for a quick consult. 

CBC on October 23, 2012

Round 2 Starts at 10am on Thursday, 25-Oct. Mom and Dad are going to tag along for the fun. We have reservations for a late lunch at Petit Louis Bistro, I'm going to enjoy a good meal while I can.

Chemo Treatment #1 (+ 3 Days)

While I'm not sitting around waiting for the less pleasant side effects of ABVD to kick in, I'm feeling pretty lucky so far. It's been more than three days since my first treatment and I'm feeling remarkably good. My appetite is fine although some foods do taste slightly different now. And I'm sleeping well enough to be rested in the morning although I there was a couple times today where I felt a little tired. So I'm keeping to a normal routine as best as possible. Tomorrow is another day and every treatment may be different so I'll take the good times while they last.  And Rick (a friend of my Aunt Kirk's) was absolutely correct when he said one of the most important things to know is where the nearest restroom is. I'm drinking plenty of water and the occasional Gatorade and this is requiring much more frequent trips to the WC.

Chemo Treatment #1

[TMI Warning!]

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There is info below that may be considered “too much information” for some. I include it because it’s been helpful to me to know the range of ABVD effects/side effects even though not all (hopefully) will impact me.

***

Jen, David and Alison accompanied me to the appointment; they wanted to see for themselves what my days are going to be like every two weeks. We were on time and checked in with Lauren Wirth. She is Dr. Seifter’s Patient Service Coordinator, and the first person I really spoke to when I was getting down to the business of getting well. She could have easily said, "he’s not taking new patients", or no you don’t have a referral, or some other polite brush-off that I have heard before. But she took my call, listened to my plea (short story), and had Dr. Seifter call me back. And I’m grateful for her decision because here we are about 6 weeks later and doing well.

We met Dr. Seifter promptly at 9:30 for a quick checkout. My temperature was below 97° and my blood pressure was 120/80 – I’d like to think this means I was cool and calm heading into my first treatment.  I’ve been taking my temperature for a few weeks now, first thing in the morning, and it averages 97.6°. At the time of starting this blog entry I am up to 98.5° but it’s back to normal now. No worries.

Here’s Dr. Seifter (nice tie!) and me...the time stamp is off by an hour (now fixed):

Dr. Seifter and me

Even though I make him look average in height (like I do most people), he is larger than life for me! We had a chance to ask some additional questions in Dr. Seifter’s office and here are the answers:

1. Anti nausea meds will be given intravenously and will last up to 3 days.
2. I need to continue with allopurinol (keep Uric acid from building up) until 18-Oct.
3. Dosing is based on Body Surface Area, a known calculation. MY BSA IS 2.62 m². Here’s an example of how to calculate this based on one model/equation (DuBois): 

Body Surface Area Calculator

And voila, here is my record-setting dose (that is based on a relatively small population of 80+ patients):

Adriamycin “A”: 65mg 

Bleomycin “B”: 26mg  

Vinblastine “V”: 16mg 

Dacarbazine “D”: 980mg

We then walked down to the chemotherapy room and met Anna Ricchio and Dawn Guttman, the oncology/chemo nursing staff, or “angels” as Dr. Seifter calls them. And they truly are. Each are as accommodating and loving as anyone you will meet. They take time to explain everything and make great conversation as well. They have further extended the group excellent professionals who have guided me quickly and smartly in my search for knowledge about my enlarged lymph node and subsequent diagnosis. And as I now know, this chemo room (5 chairs, 4 rotating staff) is for Dr. Seifter’s patients. I settled into my recliner chair joined a couple others who were already into their respective treatments. One humorous note...the lab that makes the chemo prescription called Anna and Dawn to verify that the doses they ordered were correct. My height and weight were reiterated, and after some quick calculations, the doses were confirmed.

Angels

We got started at 9:55. The vein of choice is on the topside of my left wrist, just above the hand and ulna “knot”. First is a liter bag (I’ll go through two total today) of standard saline solution - sodium chloride (NaCl). Then the anti-nausea medications drips were started. First was Emend and then Aloxi. Each were hung as small IV bags, and only after the previous bag was drained. Next was Decadron, a steroid (glucocorticosteroid) was started. It assist with the possible affects of the chemo. This may make for a sleepless night tonight. Here’s some good info on Decadron:

Decadron Info

 After an hour, it was time for the chemo. In a slight change from a prior discussion we are going to start with the three that are “pushed” into the IV.  Here’s the brief timeline.

11am: Start with A. It’s a red liquid, looks like commercial hummingbird food, was pushed into the IV via a medium syringe. From the dose levels above, it’s the largest dose of the three being pushed. Dawn sat next to me and gently squeezed the syringe for about 10 minutes until that dose was complete. I ate ice chips, which seem to help reduce mouth sores from A by reducing blood flow in the mouth while it’s being administered.

11:10: B is next and is a clear liquid. Dawn pushed it in via syringe just as she did A.

11:20: V is the last to be pushed. I felt a slight but noticeable tingling as it was pushed in.

11:30: Time to start the IV drip for D. It’s a much larger dose and is metered in through an IV pump. There was a little burn on this one as it started. And the burn went in waves. I told Anna and Dawn and it was easily remedied by slowing the drip rate on the pump to closer to 90 minutes. It was much less and I got used to it and there was no real discomfort. Midway through I had to use the bathroom. Fortunately it’s a 10’ walk since the restroom is in the chemo room. And it’s the first time I’ve ever seen pinkish or copper colored urine. Thankfully the bathroom is part Proximity to restrooms will be important since I’ll take in two liters of IV fluid and all the drugs. I’ll am going often today - up to 6 times so far.

12:45: The IV is extracted and we’re done. As a final order of business we review a long list of effects, side effects and warning signs watch for:

Chemo Effects Cheat Sheet    

With hugs from Anna and Dawn for all of us, we're off to lunch. On the way out of the office, Lauren was able to move up my last two appointments in 2012. They are now on 12/7/12 and 12/21/12, both at 9am.

As the day progresses my stomach is grumbling occasionally. I’m not sure if I’m hungry or not wanting to eat - so I eat. I’m sure it doesn’t help that the Orioles just lost to the Yankees. 8 hours after the chemo IV was extracted, I’m feeling fine. I’m a little stuffy and have some slight stomach acid brewing. A 12 hour Sudafed and a couple Tums seem to do the trick.

It was good for Jen, David and Alison to see the process and take the mystery out of where I’ll be going for the next 6 months. Thank you to all who emailed, texted or called today. I was on my iPad or phone throughout the chemo session today enjoying the good wishes, prayers and banter.

Love to you all