Paul's Heart

Cancer – Dear Diary

This is probably one of the most important, and valuable posts I am going to put on “Paul’s Heart.”  It is not bad enough that a patient has so many things to see, listen to, and think about.  But I am going to give you a suggestion not only to make it easier for you, but make a difference in not only your current care, but future care.  It is no longer good enough just to have a second set of ears or eyes with you at your appointment.

From the moment that you even suspect cancer, it is time to start writing things down.  Making note of your symptoms, your daily routines, and reactions are all critical when it comes to helping your care staff treat you.  But it goes further than that.

Of course you should always take lots of notes right from the first visit.  If you have questions, write them down.  Do not wait until your appointments because your train of thought can easily be derailed if a conversation goes in a different direction than what you were anticipating.  I do not care if you fill up ten sheets of paper with questions for your oncology staff to answer, if you have questions, you deserve to have them answered.  And I will tell you why.  You, YOU are a member of your treatment team.  You need to take part in your diagnosis, treatment, and survival.  Everything is going to happen to you.  You have the most important say.

The next thing you do, and will be the easiest to maintain, compile your own medical record.  Get a notebook binder, and after each appointment, after each blood test, every scan, every specialist, ask for a copy of your record for that appointment.  Most will not charge your for this.  Why do you want to collect what your doctors will have on file?  Because, the first time that you are sent to another specialist for any other reason, you want to have all of your records available for that new physician.  I know.  In the days now where everything is paperless, there can still be delay, or worse, systems can be down.  This can be detrimental when treatment timing is so critical.  Imagine, being able to walk into a doctor’s office, and being told that another appointment will have to be made, while records are obtained from other doctors.  But instead, you either pull out your binder, or if you are technically advanced (which I am not), a zip-drive and can supply that information immediately.

But another reason to keep these records, there may come a day, when other issues might arise.  Perhaps you need to apply for Social Security Disability or other reason.  Words cannot express the frustration you will have compiling everything, if you have to do it right from the beginning, gathering everything, from every office you have had appointments with.

I will give you one more example.  And perhaps one of those “I wish someone had given me that advice” moments.

Following my open heart surgery, courtesy of my radiation therapy damage, and it became clear that I was having other issues related to chemo and radiation long term, I had to venture into a whole new arena, long term survival care.  After finding a specialist clinic, in my case Memorial Sloan Kettering Cancer Center, the very first thing they asked me for, were my records.  I felt this would be an easy task as there were only two places I had treatments, one for chemo, and the other for radiation.

Turned out, my chemotherapy and office visit records had been destroyed by a fire.  The cynic in me thinks that was a fancy term for incinerated as I had not seen them in so many years, to lighten their load, the burned my files.  Fortunately my radiation records were still available, though this was probably due to regulatory reasons.  But by not having my chemo treatment records, the doctors I was going to see, were now going to have to estimate my treatment records based on protocol used back in the 1980’s.  Exact was not going to make that big of a difference because of the particular drugs used, any dose was going to be harmful to me long term.  But the point is, half of my records were no longer available.

Now, after six years of surviving my near-death heart episode, and in the long term survivorship program, I have a backpack, filled with paperwork from every doctor, every test, every visit I have made since that day.  It weighs about eighteen pounds which is why I really need to get tech savvy and put it on some sort of disc.  But the point is, every new doctor I see, either by plan or by emergency visit, I have everything at my disposal to help that treating physician deal with me, a very complicated patient.

Now of course, I cannot carry this backpack with me everywhere, all of the time.  So I wear a medic alert bracelet, that lists the following information:  my name, abbreviated history, and on the back, lists my doctor’s name and phone number, and the instructions, “see wallet for important details”.  In my wallet, I carry two laminated cards.  One card is an abbreviated history of diagnosis discovered, and the other is probably the most important warning, that I am asplenic.  I have no spleen.  This is important because as I am taking to a hospital, where germs and bacteria thrive, my immune system is compromised by not having a spleen, and preventative measures need to be taken to prevent me from contracting an infection of any kind… which with great ease could turn septic, and fatal for me.

As a patient, we have so much on our minds, and things can easily be forgotten.  If I give any advice on this web site, I consider this post to be one of the most valuable.  Keep records of your cancer journey – and that goes beyond treatment and remission.  You never know when you will need them.