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.

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.

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.

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.

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.