Friday, December 24, 2010

Wednesday, December 15, 2010

15th - Like a Baby...Only Adult Size

Today marked two months from my first chemo treatment.  I feel like I have matured 10 years mentally, thinking and prioritizing things quite differently than I used to.  It is hard to express at the moment, but I will share with you when I am able.

Treatment #5 of 12 was last Thursday and everything went okay.  I briefly met a new nurse named Ann before falling asleep (for 4 hours) in the treatment chair.  Ann is an instant favorite, as she managed to give me all my infusions without waking me up.  There is still a nationwide shortage of Adriamycin (the "Red Devil" / "Red Angel"), but Dr. Frenette's office received a shipment just in time for me.  I feel better knowing that I am getting the real protocol, rather than a substitute like last time. 

On the subject of the substitute protocol, you will recall me mentioning that I thought it accelerated my hair loss.  Either that was true, or it was just time for it to come off.  After returning from the barber shop today, I got the following reactions from the family:

Stuart - I don't think it looks that different.  Is it soft and fuzzy?
Cooper (3) - You look silly (as he throws himself to the floor laughing)
Peyton (6) - (holding her hands 12 inches apart vertically) You look like a baby...only adult size

Here are a couple of my favorite pictures from the adventure:

The Barbershop Mohawk

The New Me














They say that sometimes when your hair grows back, it is drastically different than it used to be.  Here are a few possibilities for your voting pleasure...let me know which one you like, and I will do my best.

The "Owen Wilson"

The "Patrick Dempsey"
a.k.a. "McDreamy"

The "Commander in Chief"



The side-effects of the treatments are certainly feeling more cumulative, as many warned.  It just takes longer to feel better after each one.  Nausea, fatigue and the numbness in my feet remain the chief complaints.

I will tell you what though, it is a lot easier to deal with all this now that I know for sure I am getting better.

Wednesday, December 8, 2010

8th - Great News

As most of you know, I had an interim PET & CT scan on Monday morning.  Stuart and I went to Dr. Frenette's office this morning to hear the results and got great news.  The scan showed no new tumors and reduced size and metabolic activity in the previously documented areas.  In fact, the radiologist (Dr. Shah) put this in his report; "currently, no evidence of metabolically active disease is identified".  Dr. Frenette's quote was that the results were "as good as he hoped for, maybe better".

Frankly, it took me a while today to get into the spirit of the news.  I have been obsessing about this scan for weeks and was prepared for the worst, so please do not blame me.  I thought for sure that the nurse / assistant in the radiology department forgot to give me the nuclear medicine or something.  As the day wore on though, I realized it was real and I could not feel better.  It is a long road ahead, but I will take that over being in the ditch.

Treatment #5 of 12 is tomorrow and my mind is starting to think about the 50% complete mark (I am still convinced I will be done in 6 months, rather than 8 months).  My next PET & CT scan will be after my fourth cycle in February.

Thank you and your families for your thoughts and prayers, as they have clearly been working and lifted me up so far!  Please keep up the great work.

Thursday, November 25, 2010

25th - Treatment Went Almost Flawlessly

Just  a quick update on yesterday's visit to Dr. Frenette's office...

Stuart and I saw Dr. Frenette for about 15 minutes for an exam.  The only issue he responded to was the numbness / tingling in my feet.  He said it was a side-effect of the Vinblastine and that he wanted to keep going for one more treatment and then assess whether my dosage needed to be reduced.  Other than that, he was ok with the other issues I reported.  We scheduled the interim PET scan for Monday December 6th at CMC Main hospital...big day for me.

Treatment today went almost flawlessly.  In the midst of the treatment, the nurse came over to break the bad news that there is a nationwide shortage of Adriamycin (the red stuff).  The doctor recommended a substitute drug in the same "family" called Epirubicin.  I signed the waiver and moved on.

I am feeling ok today and will try my best to pound down some Turkey and fixings...I will be saying a big thank you to each of you during my pre-meal blessing.

4 down...8 to go...

Monday, November 22, 2010

22nd - John Larroquette...From a Distance

Thank you to the Kerrins' for bringing us an absolutely delicious pot roast over the weekend.  I will be enjoying the left-overs for days.  Thank you to Stuart's parents, Bill and Cathy, for coming down to keep us company and help out around the house.  Thank you to Shelley Typrin for the good-luck amber necklace.

Time has flown by over the last couple of weeks.  It is hard to believe that I am headed to see Dr. Frenette on Wednesday for my fourth treatment, which is the end of my second "cycle".  This one carries some additional significance, as it is protocol to follow the second cycle with a PET scan to check treatment progress.  The scan is not scheduled yet, but I suspect it will be next week at the hospital.  I am optimistic about it, but I would be lying if I did not admit to being nervous as hell.

As I mentioned in my last (very short) post, my third treatment went "fine".  I have come to expect a new experience (or more) each time I visit Dr. Frenette's office and this trip did not disappoint.  As I was sitting in the treatment chair waiting for my blood tests to come back, I found myself getting nauseous over just being there.  Apparently it is a pretty common phenomenon called "anticipatory nausea", which is when you get sick over the thought of something that has not even happened to you yet.  Next time, I will be taking the anti-nausea medication before I go into the office.  That said, the "hangover" from treatment was a little longer this time and I ranked the days following it as:

Friday: 5
Saturday: 3
Sunday: 4
Monday: 5
Tuesday: 6
Wednesday: 8 (fyi, I consider 8 "back to normal")

Since then, I have been feeling much better and my activity level has been pretty good.  I have done some work off and on from the house and have been walking regularly.  The walking is getting a little slower though, as I have developed tingling in both my feet.  Apparently, this "neuropathy" is a common side-effect of the Vinblastine (the "V", in ABVD), and there is not much you can do about it, other than stop that part of the treatment if it gets to be too much to handle.  I will certainly mention this to Dr. Frenette on Wednesday, but if history is any indication, he will not be impressed. 

During my last visit to Dr. Frenette, I complained of continuous pain in my groin, which I was afraid was lymph nodes acting up.  Rather than examining my groin, he carefully studied my neck...from his chair which was four feet away...and said I was fine.  Works for me.  Stuart has told me multiple times that Dr. Frenette reminds her of John Larroquette, of Night Court fame.  I can see it, from a distance, and his good sense of humor probably adds to the comparison.


Can you see the likeness?

Talk to you soon and Happy Thanksgiving!

Thursday, November 11, 2010

Wednesday, November 10, 2010

10th - Magic Mouthwash

Happy Birthday to my favorite girl under 12 years old, my daughter Peyton, who turns 6 years old today!

Thanks to Joelle & Ken Cohn for the copy of The Junction Boys, which tells the story of a great Bear Bryant coached college football team at Texas A&M.  I am the kind of guy who will pick the movie over the book in most circumstances, but I do like reading more if it is a true story like this one.  Thanks to Paige Phillips for bringing dinner and Tracy Kerrins for still more baked goods.

The last week has flown by and has been mostly uneventful (read Dan is spending a lot of time with the iPad).  My biggest challenge has been keeping my white blood cell count up.  It has continued to be low on its own, so Dr. Frenette has continued to give me "booster shots" of Neupogen to keep me healthy enough for treatment.  You may remember that my low Absolute Neutrophil  Count (ANC) of 400 cells/microliter delayed my second treatment by a day.  The question of "how low can you go" was answered last Wednesday when I literally had zero.  To put that in perspective, my body could not fight the trauma sustained when I flossed my teeth.  My entire mouth became inflammed to the point where the nurse prescribed a numbing "Magic Mouthwash".

I am keeping my weight up and walking around the neighborhood every couple days in an attempt to stay active.  I can now walk my neighborhood's three-mile loop in under 50:00 minutes.  We can call it my personal Tour de Ballantyne until someone joins me.

My hair is thinning, but very much still around.  On a positive note, not having to shave my face every day is fantastic.  Here is a recent picture.


Cooper (3), Dan, Peyton (6) on Halloween afternoon.




















So, many blood draws and booster shots later, I am ready for treatment tomorrow.  Wish me luck!

Tuesday, November 2, 2010

2nd - Need a Pick-me-up?

Thank you to Cheryl Johnson for being my underground supplier of People magazine and to Bill & Cathy Clarke for the "Team Deets" hats.  A special thank you to my brother Doug for keeping me company during my treatment on Friday.

If you are thinking "I thought he was supposed to get treatment on Thursday?" you are in good company.  The visit to Dr. Frenette's started just fine (weight, pulse, blood pressure, etc.), but came to a complete stop when the results of my bloodwork came back.  I felt great, looked average as normal, but apparently the previous treatment had wreaked havoc on my immune system.  My white blood cell count was insanely low, as was my Absolute Neutrophil Count (ANC).  These cells are particularly important in fighting off infection and are the first responders to the traumas your body might experience, so you do not want to go without.

Fortunately for me, modern medicine saved the day again.  Dr. Frenette ordered up a shot of Neupogen and sent me home to wait for 24 hours.  Neupogen is aptly named, since it is designed to quickly increase your Neutrophil count, through stimulation of your bone marrow.  It is strong stuff and made my bones ache like I got hit repeatedly with a baseball bat.

I was naturally pessimistic upon arrival to Dr. Frenette's on Friday, thinking that there was no chance of receiving treatment and that my prognosis was tanking.  Jennifer, my oncology nurse for the day, was more optimistic however.  As she told Stuart and me, "I would bet the farm he is getting chemo today".  Why did she think this?  Neupogen works great in young, "otherwise healthy" people.  If I had a nickel for every time I heard that description of myself, I would be a young, rich, "otherwise healthy" person.  She turned out to be right though.

This treatment was a little quicker than the last, maybe 3 1/2 hours all told.  The side effects were similar...fatigue, nausea and that crazy pain in my mouth.  I graded the days as:

Friday: 7
Saturday: 5
Sunday: 4 (I did manage to force myself out to trick-or-treat with the kids for a few minutes)
Monday: 6
Tuesday: 8

Keep your good thoughts and prayers coming.  1 cycle down, 5 to go.

Wednesday, October 27, 2010

27th - Birds, Pigs & Me

Let me start by saying how wonderful you all are.  I am so glad Stuart has so many friends!

Thank you to Susan Bell, Courtney Lyons and Cheryl Johnson for watching our children over the last few days. 

Thank you to the Cohns, Freemans, Haynes, Hetzels, Kerrins, Rullers and my Mom for providing copious amounts of wonderful food.  Everyone has helped me put a few pounds back on, although they seem to be in the wrong places.  I asked specifically for biceps, not love handles. 

A special thank you to Brian and Sarah Thompson for not only bringing us food, but introducing us to the seductive world of slow cooker chocolate cake.  Only in the South people...only in the South.

The last few days have all been very good physically.  I would rate them each a 7 or 8 out of 10.  I continue to take extra Prilosec OTC for stomach pain / heartburn, which continues to be my chief compliant.  Other than that (and the dwindling cancer), I am in "ship shape".  Tomorrow (Thursday) is my second treatment and believe it or not I am looking forward to it.  I think it is the simple fact that my parents raised me to equate pain with gain.

There is one more special thank you that I have to give here and it lends itself to my story.  My wonderful teammates at Bank of America (too many to list here) chipped in and bought me a very "pimped out" iPad, pre-loaded with their favorites Apps, Books, TV Shows, Movies, etc.  My favorite App by far is "Angry Birds", where you become addicted to flinging birds with a slingshot at the pigs who have stolen their eggs (which has made them...wait for it...angry!).  In the last few days, this game has become my metaphor of choice.  Follow me now...the birds are the chemo, the pigs are the cancer and tell me that the house below doesn't look like my chest...

Wish me luck tomorrow...bring on the birds!!!


You can see the white bird on the right of the picture...working hard to kill one of the cancerous pigs...

Wednesday, October 20, 2010

20th - Utterly Unimpressed

Let me start by saying thank you to Sparky for sending me a new copy of Lance Armstrong's book "It's Not About the Bike: My Journey Back to Life".  I should also say thank you to Bill, Cathy, Gray and Jamie for the great gifts, in particular the 6-month subscription to Netflix.  How did Blockbuster not see Netflix coming?  Mismanagement for the ages...

The visit with Dr. Frenette today was a good one.  As I mentioned yesterday, we had a long list for him, but he was up to the task.  Most of the symptoms I had did not phase him, in fact, Stuart and I both left reassured by how utterly unimpressed he seems with my cancer.  When I expect my stomach pain to be an exploding organ, he tells me not to be afraid of a little more Prilosec OTC.  When I think losing weight this early in chemo means I am done for, he reassures me "it's the American way to put the weight back on after treatment".  He is the perfect antidote for my obsessive compulsive disorder (OCD).  Speaking of my OCD, the word must have already spread throughout Dr. Frenette's office.  As one of nurses was reviewing the results of my blood work with me, she asked me twice if I wanted a copy to take home.  I declined the offer and headed home today feeling positive about both science and my faith.

Tuesday, October 19, 2010

19th - Conditioner Seems Silly

Happy Birthday today to my Dad, Dan Sr.  I love you.

Sorry for missing a few days of posts.  I attribute it to extreme melancholy with my situation.  That is in the past now and I am back to the expected level of positive mojo.

Stuart and I rated each of the last few days as they went by.  We did this to set up some expectation of what "normal" might be, but it will also give you some insight into what has been going on.  Sorry in advance to the believers in the 1-5 or 1-7 Likert Scale...we went with the tried and true 1-10 Cancer Sucks Scale (with 1 being the worst feeling in the world and 10 being the best).  Here is how we catalogued the days:

Thursday (Chemo Day): Can't recall...passed out
Friday (Day After): 7
Saturday: 4 (I actually feel asleep in the middle of the Hokie's rout of Wake Forest)
Sunday: 6
Monday: 7
Today (Tuesday): 8

All-in-all, I think this is pretty decent, assuming I feel good for the next 8 days prior to my next treatment and the rhythm is the same for the next 6 months.  Incidentally, I have also decided that I am going to kick this thing in 6 months rather than 8 months (you may recall the 6-8 month range the oncologist gave me for chemo).

Other than the Hokie victory, which moved us back into the the Top 25 in the polls, the highlight of the last few days has been talking with my old college roommate, Steve Sparks (a.k.a. Sparky).  Sparky always made me laugh and has not lost his touch.  We talked for almost an hour, mostly about his experience with Hodgkin's, but there was some inappropriate humor mixed in for good measure.  I have not laughed like that in a while and it was much needed.  Thanks Sparky.

Tomorrow I have an appointment with Dr. Frenette in the afternoon.  His goal is to check blood work; my goal will be to talk about mouth pain, bone aches, heartburn, flu shots, port pain, CD68+ macrophages and fear of children and public spaces.  It should be fun for him.

I will leave you with this.  It sure did seem silly putting conditioner in my hair in the shower today.

Friday, October 15, 2010

15th - The New Normal

Many of you have heard the phrase "the new normal".  It has been overused many times in the media over the past few years and I heard it a lot lately related to my condition.  The theory is that I will find a rhythm or pace to my life during this treatment.  As today is only "day 2" (common nomenclature for the first day after chemo), I will not pretend that I am anywhere close to the new normal.  Stuart will be glad to hear it after witnessing my day.

So how did I feel?  Generally pretty good.  A few common side effects not worth mentioning, although I will give special recognition to my burning feet...who knew?  Good thing I bought the lotion.

I did work for a couple hours and took a walk around the neighborhood for about an hour.  Other than those three, the rest of the hours in my day were spent on the Internet trying to get my head around what I read in my pathology report yesterday.  I will no doubt get past it and move on.

One of my college roommates, Steve Sparks, posted a comment to yesterday's entry.  He was diagnosed with Hodgkin's at age 28, so I look forward to his wisdom and experience as I go through this.

Tomorrow, my Hokies have a slim chance of beating Wake Forest and moving the team to 5-2 on the year...I will be tuned into ESPNU tomorrow for the 3:30 kickoff.

Thursday, October 14, 2010

14th - Today's Flight to London

Thanks to everyone for the good mojo today.  I got through my first chemo session thanks to you.

In the end, it was the same as the routine flight from Charlotte to London.  Six plus hours long, the other people around you really don't look too healthy, the movie selection is terrible and the food makes you sick to your stomach.  For the frequent flyers in the group, I really wish chemo could be like a nice flight on Singapore Airlines.  Alas, it is too similar to US Airways.

In all seriousness, today's nurse Eileen was fantastic and she got me through with flying colors.  She is the mother of three boys and is from NY state.  Although my Mom is from NJ, they could have been sisters in spirit.  She made it much easier to bear.

Stuart stayed with me most of the time...I nodded off for a while in the beginning after a healthy dose of Benadryl as part of the "pre-chemo regime" and even watched a bit of a movie.  Today's film was Chloe, a racy, rated-R number that was long on nude scenes featuring Amanda Seyfriend, but woefully short on plot.  At least it didn't make me throw-up.

Speaking of nudity, I know I promised a picture of the port, but I think it's best to wait a few days...things are not where they are supposed to be at the moment.

One piece of annoying news today.  I read further into my pathology report and found that my count of CD68+ cells is very high (>25% of the background/benign cells are these macrophage cells).  A recent study about Hodgkin's Lymphoma published in the New England Journal of Medicine linked this "molecular marker" to a poorer prognosis for primary treatment as well as secondary treatment in case of a relapse.

So, all in all, today was a good day.  The chemo went great, but my pathology report is back on the front-burner of my mind.

Wednesday, October 13, 2010

13th - Under the Tent, Dreaming

Special thanks today to my brother Doug (middle brother of 3 boys) for getting up at the crack of dawn to take me to the hospital.  This is becoming a bad habit, as Doug also drove me to my first knee surgery a few years ago.  I hope I never repay this particular type of favor to you Doug.

Next, let me apologize to CMC-University, which in a moment of anger yesterday I referred to as a "B-level" facility.  Everyone was great there this morning and I successfully had my port placed.

This was another surgery performed under mild anesthesia (a.k.a. "Twilight")...so although I do not recall everything, I feel like I was very engaged...which you know the doctors and nurses loved.  As part of the preparation for the surgery, a sheet was taped to the base of my neck and then used to create a "tent" where a nurse could sit beside me and neither of us would see the real action going on.  This nurse, Charlotte, and I talked about music, work, my upcoming chemo and many other things as I prodded her for additional narcotics.  I was done in about 75 minutes, then spent another hour or so in recovery until I was discharged.














The port is under the large piece of gauze.  The smaller piece of gauze is an incision they made to help guide the catheter into a vein headed to my heart.


You can see the "port" below the scar (this photo was taken in March after a few months of healing).  It has several "bumps" to guide needles into it.  You can also see the catheter running up and over the clavicle, then into a large vein that then runs to the heart.

Chemo starts tomorrow at 10 AM at Dr. Frenette's office in Ballantyne.  I am scared, but find confidence in the fact that I have chosen the right doctor and that all of you are thinking of me and praying for me.

Bring on the Red Devil & Friends (sounds like a bad children's TV show)!

Tuesday, October 12, 2010

12th - A Problem w/ Mr. Deets

Special thanks again today to Bridget Ruller for watching Cooper in the morning and taking him to school.

This morning was extremely disappointing.  After another night of "no food or drink after midnight", Stuart and I went to CMC-Mercy at 9:30 for my port placement.  I will say that Mercy has been nicely remodeled since we last visited in the 1990's.  Beyond that, I have nothing nice to say today.  As we were beginning to fill out paperwork with the registrar, an RN stuck her head in and said, "There is a problem with Mr. Deets".  Wait a second, I am Mr. Deets, can I participate in this conversation?  She went on to explain that some of the equipment used in the port placement had been down since the early morning.  A phone call would have been nice!

So, we proceeded upstairs, where a very uninspiring middle-aged nurse asked if I'd rather have a temporary "pick-line" installed instead.  What?  Is this a used car lot?  I did make a couple phone calls to see if we could pull a string to get things done, but without success.

The port placement will have to wait until tomorrow...at CMC-University...just so I get the full tour of the "B" level facilities.

Wow, that post was cathartic.


An artist's rendition of CMC-Mercy after ongoing renovations are complete.

Monday, October 11, 2010

11th - Good News At Last

I spent a couple hours this morning with Debbie, one of the nurses at Dr. Frenette's office.  The point of the meeting was to walk through the detail of the upcoming ABVD chemotherapy treatment.  It was called a "learn" session and was very similar to the one Stuart and I attended last week at Dr. Hellner's office.

Dr. Frenette sounds like he is a big believer in "throwing the kitchen sink" at the side-effects that may result from the treatment.  Debbie walked me through a very expansive regime of drugs to deal with nausea, fever, chills, allergies, constipation, diarrhea, indigestion, sleep problems, etc.  It seems there are many side effects to ABVD Chemotherapy that can be controlled through drugs up front.  Others, like blood count changes and sore throat are treated symptomatically.  Others still, like hair-loss, sadly, cannot be controlled.

Everything is now set for the port placement tomorrow morning and the start of treatment on Thursday.

Over lunch, we got wonderful news from Dr. Hellner's office.  The results of the bone marrow biopsy came back negative; everything is fine with my bone marrow!  This finalizes the diagnosis as Stage IIIa.  Stuart and I both cried, as this was the first piece of good news in a very long string of bad news.

Friday, October 8, 2010

8th - How About a Port?

Not much news to report today, other than the fact that Dr. Frenette is recommending I have a "port" put in next week, prior to beginning my chemotherapy.

The best description I can find of a port is from Wikipedia:
In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

I'll post a picture once this thing is in.  For now, here are a couple generic images:

Port-a-Cath with needle assembly inserted.


Chest X-ray showing an implanted port.  Not me, as this guy doesn't look so good.

Thursday, October 7, 2010

7th - Learning About Chemo

With almost all of my test results back, with the exception of the bone marrow biopsy, it is time to start seriously planning for chemotherapy.  As I have mentioned previously, the standard of care in the US for Hodgkin's Lymphoma is ABVD chemotherapy.  For me, it will be a 6-8 month regime, with treatments given every two weeks.

In order to learn more about ABVD and the potential side effects, Stuart and I spent the better part of the morning with Lindsay D. Griffin, Oncology RN extraordinaire.  Lindsay was great and gave us a lot of detail, which I'll summarize for those of you who are interested.

ABVD is an acronym using the first letter of each of the four chemotherapy drugs used.

A = Adriamycin/Doxorubicin (a.k.a. "The Red Devil")

The red drug, Adriamycin, is usually given first.  It is administered via a slow IV push over 10 minutes or so.  Common side effects include:
  • Reduced blood counts, possibly leading to fever, chills, etc.
  • Hair loss
  • Nausea and vomiting
  • Discolored (red) urine - no shock here
I should have this drug in relatively low doses, although in higher doses it can cause heart problems.

B = Bleomycin/Blenoxane (a.k.a. Bleo)


Bleo is a clear fluid given via IV push, or mixed in 100ml normal saline solution and infused over 10 minutes or so.  Common side effects include:
  • Fever and chills, which may occur after treatment
  • Skin and nail changes, typically involving brown, yellow or pink discoloration and brittle texture.
More rarely, Bleo can case changes in your lung tissue, including shortness of breath.  It also contributes to hair loss.  In some cases there is an allergic reaction to Bleo, so prior to your first chemo treatment you will receive a "test dose".

V = Vinblastine/Velban/VLB

Vinblastine is another clear fluid given via IV injection/infusion.  Common side effects include:
  • Nerve changes or muscle cramping, which may occur within two weeks of the first treatment or after several doses have been given.  Numbness, tingling or burning in the fingers and toes is common.
  • Constipation
Less typically, reduced blood counts, hair loss and increased blood pressure may occur.

D = Dacarbazine/DTIC

Dacarbazine is a clear liquid or may have a faint yellow tint.  It is typically mixed in 250ml or more of D5W and infused over 30 minutes or longer (more of a drip).  Common side effects include:
  • Flu-like syndrome
  • Reduced blood counts
  • Nausea and vomiting
Less commonly, it may promote hair loss.  Uh-oh!

That is ABVD...3-5 hours and you are done and on your way.

Wednesday, October 6, 2010

6th - The Jury Is Back

Special thanks again to my Mom, Carol Deets, who delayed her flight from Sunday until today to help with our two children and the house.  I love you Mom!

Today was a very long day.  I had several tests done, met a new oncologist for a second opinion and received my final pathology results from the mediastinoscopy.

Both of the tests I had done were done to establish baselines of organ function prior to chemotherapy.  That is ominous, is it not? The first test was called a pulmonary function test and involved me sitting in a small, enclosed glass booth huffing and puffing on air and gas until I nearly passed out.  Results normal.  The second test was an Echo cardiogram, which is essentially a sonogram that checks heart function.  Results normal.

On a seemingly unrelated note, we have used one of Charlotte's best interior designers, Wanda Horton, a few times.  Upon hearing what I was going through, Wanda mentioned that one of her clients was Charlotte's best oncologist, and we simply needed to see him.  After we confirmed her thought, we met today with one of Charlotte's Best Doctor's 2010, Gary P. Frenette, MD PhD.  Dr. Frenette was fantastic, and although I'm going to feel guilty about leaving Dr. Hellner, I am going to leave my care to Dr. Frenette from here on out.  Thank you Wanda!

The last news of the day was really a foregone conclusion.  Dr. Reames called the house and gave me the final pathology results: Hodgkin's Lymphoma, Nodular Sclerosis subtype.

Tuesday, October 5, 2010

5th - Bone Marrow Biopsy

Stuart and I went to Dr. Hellner's office this morning for a follow-up appointment after my mediastinoscopy last week and my PET scan yesterday.

Dr. Hellner reviewed the fact that the initial results of the biopsy were suggestive of Hodgkin's Lymphoma, Nodular Sclerosis subtype.  The news today was that the PET scan showed lyphadenopathy below my diaphragm, specifically in my abdomen.  My spleen was also involved, although I'd been told on multiple occasions that the spleen is a "glorified lymph node" and is often affected.  The fact that I have disease above and below my diaphragm means that I am now considered to have an advanced stage (Stage III or Stage IV) of Lymphoma.  Stage IV means that the disease has spread to organs outside the lymph system, such as liver, lung, or bone marrow.  It is for that reason that I had the privilege of a bone marrow biopsy today.  Dr. Hellner was leaving for a vacation to Napa that evening, so her day was incredibly busy.  She asked us to come back in the afternoon to have the procedure.

Back at the office at around 3:30 to have the bone marrow biopsy done.  I know that many of you have heard nightmare stories about how painful this procedure is, but my procedure was not that bad thanks to the wonderful Dr. Hellner and her capable nurse, Carol.  The procedure lasted about 15 minutes, 30 if you count the 15 minutes I spent stalling waiting for the Valium I took to kick in.  I assumed the fetal position on the exam table, hind quarters hanging in the breeze as Dr. Hellner pushed a thick needle into my lower back/hip.  The sensation was mostly one of pressure, with the exception of the time when the fluid marrow was extracted, which was more akin to feeling someone sucking the contents of your legs through a straw in rapid fashion.

We headed home knowing that results of this terrible test would not be back until next week.

Monday, October 4, 2010

4th - Intro. to Nuclear Medicine

Today was my introduction to the wonderful world of nuclear medicine.  From what I understand, I will become more than familiar with the science, as these scans are repeated throughout chemotherapy.  As I mentioned, Dr. Hellner ordered a PET scan to be completed, essentially to see how far the cancer had spread and to what regions.  The results of the scan help in determining the stage of the disease (I-IV).

According to Harvard Medical School, PET stands for positron emission tomography, which is an imaging technique that uses positively charged particles (radioactive positrons) to detect subtle changes in the body's metabolism and chemical activities. A PET scan provides a color-coded image of the body's function, which when combined with a CT scan can show detail on where cancer is active.  For the PET scan to be effective a substance called a tracer that produces radioactive positrons either is injected into a vein or inhaled as a gas.

In my case a nice gentleman named Bill, from Chicago he told me, injected me with radioactive material from a syringe sheathed by Tungsten.  Bill was a giant man and one of my favorites in this journey so far.  In addition to the radioactive material injected, you must drink two 16-ounce servings of a high-sugar solution.  Back in the day, this had to be some type of flavored Barium.  Bill is a magician and offered me a high-octane version of Dr. Pepper, which many of you know I love, although not as much as red wine.  Stuart was asked to leave to the waiting room as soon as I was injected as "I was radiating pretty good" and not safe to be near.

After two hours of allowing my body to absorb these materials, I was ready for the PET/CT combination scan.  It took 20 minutes and I was out of there with Stuart, who was nice enough to wait for me all day.  Results tomorrow...

Oh, I should mention that Bill told me to stay away from my children until the next day, as I was "no-joke radioactive."  Apparently he wasn't worried about my wife or mother-in-law (who did have me ask Bill if it was okay for "old people" to be near me).

Friday, October 1, 2010

1st - Having your chest shaved

Special thanks to my mother, Carol Deets, for taking care of our two kids today!

Stuart and I went to the main CMC facility this morning at 5 AM in preparation for my mediastinoscopy.  There really was no good reason to bring me in that early, as we were ready to roll by 6 AM, then had a nice wait until it was time to go at 8 AM.  Most of the preparations were as per the usual - paperwork, health questions, blood draws, IV placement, etc.

One of the preparations was quite unusual however, at least to me.  A nice gentlemen named Randolph came into the room and told me it was time to shave my chest.  Of course this is an uncomfortable proposition between two men, regardless of the fact that one is a medical professional.  As I have mentioned in previous posts, I am a (modestly) insecure person so the only thing I knew to do was strike up a conversation:

Dan (D) - So Randolph, where are you from?
Randolph (R) - Trinidad, in the Caribbean
D - When did you come to the US?
R - Came in 1969, when I defected from a government group that was travelling from Trinidad to New York, NY.  Where are you from?
D - New Jersey originally, although I have been in Charlotte for the last 12 years
R - New Jersey is terrible, even the trees smell bad
D - (on a gurney laughing) Why are we shaving my chest?
R - Picture two doctors standing over you in surgery and something goes wrong.  They need to open you up to save your life and one looks at the other and says "wait, we can not open him up...no one shaved his chest"
D - Nice one Randolph, touche

I don't recall much from the procedure itself, nor the ride home, but I certainly have the scar to prove it happened.  Dr. Reames pulled Stuart aside and told her that the preliminary pathology looked like Hodgkin's Lymphoma.

Thursday, September 30, 2010

30th - Losing my resolve

Stuart and I met with Dr. Hellner for about an hour this morning and discussed my history, her initial thoughts (lymphoma) and possible next steps.  She explained to us that there are two main types of lymphoma, Hodgkin's Lymphoma (HL) and Non-Hodgkin's Lymphoma (NHL).  She mentioned that at my age (36), I was certainly in the age group for Hodgkin's Lymphoma, although Non-Hodgkin's Lymphoma was certainly a possibility as well. 

For all the nerds in the group, Hodgkin's has a bi-modal distribution, meaning that it is most common (modal) at two (bi-) points in life.  It is most likely to be diagnosed in people in their twenties or thirties. It is less common in middle age and becomes more common again after age 60.  Non-Hodgkin's occur more often as your age increases.  The cause of Lymphoma is unknown, the prognosis varies based on type and stage, but inevitably the treatment is some type of chemotherapy.

Here are the websites that I have visited and would like to share.

Lymphoma Research Foundation http://www.lympoma.org/
The Leukemia & Lymphoma Society http://www.leukemia-lymphoma.org/
National Cancer Institute http://www.cancer.gov/
American Cancer Society http://www.cancer.org/

Both Stuart and I left Dr. Hellner's office glad that we went.  We both had a sense of realism that having cancer would not be ideal, but that Lymphoma is curable.

Next steps are to go forward with the mediastinoscopy tomorrow morning to try to get more biopsy tissue, as well as to schedule appointments next week for heart and lung tests (baselines prior to chemotherapy).

On a lighter note, my Mom came down this evening and will be staying with us through Sunday to help with the kids and the house.

Wednesday, September 29, 2010

29th - Good news is bad news

Dr. Reames called this afternoon to tell me that the pathology department called and the tissue from Monday's bronchoscopy was "non-diagnostic".  Technically, it means that there were no malignant cells found, which I took as good news.  Those in the medical profession took it as a disappointment however, as they do not seem to want to call it quits without an adequate explanation for the golf ball sized lymph nodes in my chest.  Go figure.

At this point, I think everyone but me believes that I have Lymphoma.  My resolve has started to give way, so I decided it was time to see that Oncologist for a consultation.

Dr. Kersten recommended Mariealane B. Hellner, MD, who practices near my house and is supposed to be very good.  Stuart and I will go to her office in the morning.

Tuesday, September 28, 2010

28th - A second biospsy

Dr. Davis knew the bronchoscopy might not get enough tissue to provide a definitive diagnosis, so she referred me to Mark K. Reames Sr., MD, FACS, who could perform a mediastinoscopy to get a better tissue sample if necessary.  Mediastinoscopy is a surgery that allows doctors to view the middle of the chest cavity and to do minor surgery through very small incisions. It allows surgeons or pulmonary doctors to remove lymph nodes from between the lungs and to test them for cancer or infection.

Dr. Reames is the classic southern gentleman and I felt comfortable with him from the start.  Although I was anxious to get going and get to a diagnosis, he counseled me that having a procedure before the full pathology was back on from the bronchoscopy might be rash.

We spoke for a short while and then parted ways.  I was hoping that someone would call me and tell me this whole thing was a joke, but the reality was that I would see the fine Dr. Reames on Friday.

Monday, September 27, 2010

27th - Surgeons & rock music

Special thanks today to our fantastic neighbor, Bridget Ruller, who came to our house at the crack of dawn to help with our 2 children (our daughter Peyton - 5 and our son Cooper - 3).

Stuart and I drove to Carolinas Medical Center at 6:30 AM for an 8 AM bronchoscopy with Dr. Davis and Jaspal Singh, MD, MHA.  Dr. Singh is a very good surgeon, has a decent sense of humor and loves to work while listening to classic rock music.

The procedure itself was not bad at all from my point of view.  It is done under mild to moderate sedation, which makes sense when someone is going to put a tube, camera and instrument set down your throat.  Dr. Davis mentioned prior to the procedure that the sedative worked on the same receptors as red wine, which is another of my true loves.  Suffice it to say that they used all the sedative they had on hand and still had to wrap up early when I started to wake up and 'get involved'.  They did accomplish the point of the procedure however, which was to obtain some tissue from one of my lymph nodes to send for biopsy.

 
A picture of a surgeon (certainly not Dr. Singh) performing a bronchoscopy (that is not my nose).

Friday, September 24, 2010

24th - Time for a biopsy

I went into see Dr. Kersten this morning for the formal report out of the CT results.  Dr. Kersten walked my wife (Stuart) and me through the report and images, then told us that the next step was a biopsy, then a consultation with someone in Oncology (cancer doctor).

Later in the afternoon, we saw a pulmonologist named Juhayna K. Davis, MD for a consultation on the options available to obtain tissue for the biopsy.  Dr. Davis was fantastic, despite the fact that I told her she needed to have the picture on her website changed for the better.  I simply suggested that someone on the list of Charlotte's Top Doctors 2010 should have a glamour shot.  Back to the point, Dr. Davis recommended that I opt for a less invasive procedure first.  This procedure, called a bronchoscopy, is scheduled for 8 AM Monday morning.

Thursday, September 23, 2010

23rd - Abnormal soft tissue

Dr. Kersten called me around lunchtime to tell me that I needed to come back in as soon as possible to see him and have a CT scan of my chest done.  The radiologist that read my X-ray after Dr. Kersten noted some abnormal soft tissue in my right paratracheal region. 

The CT scan took about 30 minutes and the results were ready right away.  The CT scan showed significant lymphadenopathy (a.k.d. disease of the lymph nodes) in the right paratracheal space and the right anterior prevascular space.  There were also mildly enlarged low right cervical/supraclavicular lymph nodes present and mild precarinal lymphadenopathy.  For those medically inclined, I have included a couple lymph node maps below (these are not images of me!!!).  For those not so inclined, suffice it to say a had a lot of enlarged lymph nodes on the right side of my lower neck and center of my chest...with the largest two the size of a golf ball (which is at least 1.680 inches or 42.67 millimeters in diameter for you trivia nuts).  These results were suggestive of lymphoma, but again, I was in denial.

Frontal view of Figure-D shows right paratracheal (2R and 4R) and low right cervical/supraclavicular (1) lypmh node spaces.  Diagram by Annie Frazier, MD.
Sagittal view of Figure-F shows right prevascular (3a) and precarinal lymph node spaces.  Diagram by Annie Frazier, MD.

Wednesday, September 22, 2010

22nd - Did I inhale?

My story started on a Wednesday afternoon, with a normal trip to the doctor's office.  As with many of you, I do not have a "primary care doctor" in the traditional sense, I usually just take my chances with whomever is available when I need to be seen.  Luckily for me in this case, I drew a wonderfully thorough gentleman, Brian P. Kersten, MD.  My chief complaint was a delicate matter and not very relevant to you, so I will leave it out.  As a secondary issue, I complained to Dr. Kersten of some chest tightness that had been bothering me for a couple weeks.  My hope was that the worst thing that it could be was a bad effect from my recent trip to Prague, CZ, where I rode in the front seat of an antique Praga Alfa car and inhaled fumes for hours during a tour.  Dr. Kersten ordered an EKG and an X-ray of my chest, which initially showed nothing noteworthy.


The pre-1940 Praga Alpha

22nd - Two weeks of Hell

You may find it more than a little funny that I am sitting in front of my computer starting a blog.  If you know me well, the reasons are obvious and many; if you do not know me that well or we have been out of touch for a while, suffice it to say that I have made endless fun of bloggers over the past few years.  As with most (modestly) insecure people, I tend to make fun of things that I am afraid of, jealous of, or in general do not think I would be very good at.  So, for me, blogging ranks up there with hermit crabs (I refuse to touch them), celebrities (both a fear and jealousy depending on who we are talking about), and speaking foreign languages (I need to pick a few up).

The reason for this blog is efficiency, something I have a particular love affair with.  Without the blog, I know that I will not do a good job keeping all the people I should up to speed on my new challenge.  The challenge is this...to overcome Hodgkin's Lymphoma, which I will be formally diagnosed with in two weeks time, on 6 October, 2010.  You will hear all about Hodgkin's through this blog, so I will spare you the details in this post.  In short, Hodgkin's is a form of cancer that affects the lymphatic system, which is part of the immune system.

Now that I have shared my diagnosis with you, I will fill you in on all the events leading up to the diagnosis.  It turns out to be exactly two weeks of Hell between my first doctor's appointment and my diagnosis.  My state of mind was pure denial the entire time.