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") 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 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 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.