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Monthly Archives: April 2013

Day 276 – Practice What You Preach

My name is Rick and my cancer status is unknown…

My last post outlined a tough choice between feeling good and dying.  The situation is perhaps not that harsh but the reality is we all have tough choices between short term and long term outcomes.  As an example, persons with type II diabetes often develop the disease because of poor health choices and might control the disease through improved health choices; diet, exercise, etc..  Out-of-control diabetes can lead to early death but lots of people still struggle with short term sacrifices or changes that might lead to long term success.  Study after study suggests that people with the disease realize their habits are problematic yet don’t make the necessary changes in order to improve their outcomes.  Diabetes is but one example and I won’t bore you with a long list.  I think we all face short term decisions that yield a short term benefit yet carry a long term risk.  My current side effect situation is just that… do I take a drug that is certain to curtail my lethargy at the risk of dampening the effect of a potentially life saving drug.  Tough choice indeed but not so dissimilar to what many people face every day as well.  Cancer doesn’t put me at the front of the line for hard life decisions.  I will say this though… those of you with considerably easier trade offs should have no problem making good choices.  No excuses.

One thing that this tough choice has made clear is that there are people who can help.  Sure, nobody on the face of the earth has any idea whether melanoma is going to kill me but there are certainly people who are experienced with what I am going through.  Those with experience will likely have a thoughtful point-of-view and that may be useful or better yet, improve my outcome.  It took a caring blog reader to point out this fact.  You know who you are and a huge THANK YOU goes out to you.

I have written about having the best doctors in the world.  My philosophy is to pick them and then trust them with my life.  I still feel like I have the best doctors but my disease is very tricky.  Each patient is different, each manifestation of the disease is different, there is a relatively small sample size and many of the current modalities are new.  This translates into a delicate balance of art and science; two very knowledgeable and experienced practitioners might simply have differing opinions about the best course of action.  One direction might be better than another in my particular case.

Which brings me to the point about practicing what you preach.  In an earlier post (Day 15 – Post Surgical Medial Rant) I talked about how we all need to take control of our medical situation NOT by arguing with your current doctors or Googling but rather choosing outstanding practitioners and letting them do their jobs.  If you choose a second tier doctor don’t be surprised when/if they mess up.  We would love to think all doctors are infallible but they are certainly not so why play the odds.  Sure, it is hard to know how good your doctor really is but c’mon, there are signs.  You know there are signs.  Is it really easy to get an appointment?  Is the office sort of tired looking in terms of upkeep?  Are there clear indications that more modern techniques might be employed but not by this practitioner?  Are there centers of excellence for the particular issue that this person is NOT affiliated with?  If the answer to any of these questions are yes, find another doctor!  Or, don’t be surprised if they make a mistake or make a poor choice for you.  Your life is worth entrusting it to only the best.  So, drive a little further, push to get an appointment, ask for recommendations, do your research, etc.

With that in mind, what should I do about my current situation?  Am I really being treated by the best?  I know my oncologist well and trust her implicitly but she is not 100% dedicated to melanoma.  Is that a problem?  By my own rant, am I practicing what I preach?  Are there other doctors that are exclusively focused on this disease?  Yes.  There is a group at Hopkins and another at Sloan Kettering.  In fact, there are doctors out there that are completely focused on using immunotherapy to fight melanoma.  That is all they do and nothing else.  Why haven’t I been seeing them?

The short answer is that I haven’t really needed to.  My current medical team is comprised of A players practicing in a world class facility.  The ongoing care I receive at Penn cannot be exceeded anywhere else.  I consulted with the best in the world and they all agreed with the approach my team was making.  However, I am now in a bit of a hard to pin down situation.  There are likely multiple approaches on how best to move forward and it is in my best interest to pursue them as long as I have the ability to do that.  The conversation with the ipi expert solidified that and the responder to my blog hit me over the head with it.  I am thick but not stupid!

Over the past few days I have spent about 8 hours getting all my medical papers in order.  This meant finding all my paperwork and making sure it is all in order.  The doctor I would like to consult with is very selective in who he sees.  His medical team has requested a ton of information about my case and I need to supply it.  It is in my best interest to present it in an organized and respectful manner which is what I have set out to do.  For those of you that do not have an active serious disease, you cannot imagine how much paperwork you will have to take care of.  I admit to not doing a great job with it because it didn’t matter; my healthcare providers are all in the same facility with an EMR.  I don’t need copies because they all have access to everything.  The problem is that this doctor does not have that same access.  Do NOT get me started on why they cannot!

One of the things I am creating for this doctor — or any other one for that matter — is a scaled down chronology of my situation.  Seems to me that doctors are challenged having to deduce a timeline from a mountain of paperwork.  I have a mountain of paperwork.  So, I have distilled down what I believe are the most important dates into a single, easy-to-consume (I hope) timeline with the important dates in my therapy.  Every entry with a “report” has an associated report.  At the moment, the timeline looks like the following chart.  I still have a few open items in the report column but mostly I have everything.  My plan is to include this for the doctor and then number the reports so they can locate them easily.

6/15/12 Internist palpates swollen glands, blood test ordered report – blood test
7/11/12 ENT round of antibiotics, rule out infection
7/16/12 FNA confirms cancer report
7/24/12 (scan) Neck ultrasound report
7/27/12 (scan) Whole body PET report
7/31/12 (scan) head/neck MRI report
8/3/12 Punch biopsy at Hopkins report – biopsy
8/6/12 FNA by oncologist report
8/7/12 (surgery) Lymph node resection, graft report – post op
8/13/12 (scan)  Brain MRI report
8/22/12 (approx) chemo #1
9/1/12 surgical site infection (Antibiotic prescribed; Bactrim DS)
9/9/12 ipi rash, (Steroid prescribed 20mg prednisone… 3 days then taper)
9/17/12 chemo #2 (4 weeks from prior)
10/8/12 chemo #3 (3 weeks from prior)
10/17/12 (scan)  CT report
10/29/12 chemo #4 (4 weeks from prior)
10/31/12 (scan) MRI and CT, radiation prep report
11/2/12 Radiation begins
11/20/12 Endocrinologist
12/17/12 Radiation ends
1/11/13 (scan)  Brain MRI report
1/11/13 (scan)  Neck MRI report
1/11/13 (scan)  Whole body PET report
2/15/13 20mg prednisone… 10 days then taper
3/14/13 (scan)  Neck MRI report

Hopefully this type of analysis will help them help me.  I have also recorded every blood sample and put it into a single spreadsheet.  There are 46 different tests, each with up to 15 different samples.  That is another mountain of data and the only way an outside doctor can access it is one sample at a time.  How could they piece together any type of trend or anything?  Now, it is all in a single table.

BloodTestsSample

I spent two days this week-end working in the garden.  The weather has been incredible so I just couldn’t be inside.  My main focus was clean up; weeding and pruning.  The front garden looks nice and now I need to work on the hedges as well as the back areas.  I also need to weed the raspberry bramble.  Hopefully more nice weather will beckon me outside again.

I continue to spend time with my in-laws.  Our family’s have been going to dinner together a good amount lately.  I also try to do as much as I can for them.  Sunday, I took my father-in-law out for lunch.  He wanted a cheesesteak so we went to Tony Luke’s.  I don’t eat that kind of food but I had their veggie hoagie called the Uncle Mike.  Wow, I am a connoisseur of veggie hoagies and veggie burgers.  This was easily the best veggie hoagie out there!

The other big activity for my in-laws is baking a coffee cake for my mother-in-law.  She has been fixated on this type of cake and will only accept one from a bakery conveniently located at the Jersey shore.  Over the past few weeks I have been trying to hone in on what she likes and set about baking it.  Turns out that it is not coffee cake but rather a jazzed up cinnamon swirl bread.  I have read many recipes and even brought up from Florida a 50+ year old cookbook that might contain a recipe good enough for her palette.  I brioche dough is generally the approach but needs to be modified for what she wants.  I am happy to report that as of Sunday night, I executed a version that she loved.  I used a modified version (more sugar, no bread flour) of my challah and rolled it up with a cinnamon-based paste and topped it with more sweet stuff on top.  Still a little tough on the outside but generally got rave reviews.

Most of the health issues I have remain and get a little better every day.  One thing that has not improved is the amount of saliva on the left side of my mouth.  I have a feeling I will never be able to chew anything dry like pretzels or crackers on that side of my mouth.  I could think of many worse things than that.  My shoulder is still sore to the touch and painful to use.  I don’t think that will ever go away.  The graft on my thigh is still slightly discolored but fading.  The dermatologist was impressed with how well that has healed.