Miracles and Wonders
Advice for Survivors and Care Givers
Throughout the diagnosis and treatment of Debbie's cancer, it seemed that we were
constantly learning lessons the hard way and figuring things out for ourselves. Some of
that is inevitable because you simply can't understand what it is like until you go
through it yourself, but we are hoping that at least some of those lessons can be passed
on to others.

Page 1 (this page)
  • Every cancer is different
  • Statistics are just numbers
  • Be prepared
  • Take notes
  • Keep a chemo journal
Page 2
  • The power of prayer
  • Share the burden
  • Sometimes you just need to cry
  • Stay positive when you can
  • Everyone knows a cancer victim and/or survivor
  • Be careful on the web
Page 3
  • Clinical trials and research studies
  • Cheap wigs and other bad advice
  • Be assertive when necessary
Page 4
  • The importance of feeling normal
  • Don't blame yourself



Every cancer is different
    This is one of the most important lessons. Every cancer is different and every
    person's experience with cancer either as a survivor or as a caregiver is unique.
    Many people will try to give you advice or tell you about their family and friends
    who have had cancer, but your path is always going to be a little different. So
    don't try to measure your progress by comparing to how others have done, and
    don't just mindlessly follow every piece of advice that you get. Remember that
    you are the only person who knows exactly what you are going through so you
    must filter everything that you see, hear, or read, through your own personal
    experiences.
    One of Debbie's pet peeves was that she was constantly seeing women who
    were in Chemotherapy yet still appeared to have their own hair. She'd say "How
    come she's got hair?", and the answer was "every cancer is different". The other
    woman might have a different type of cancer, or be on a different chemotherapy
    agent, or just be one of the lucky ones who doesn't get that particular side-
    effect. Regardless of the details, expecting that your cancer will behave just like
    someone else's is just going to drive you crazy. So be prepared for your own
    unique journey.

Statistics are just numbers
    During the course of your diagnosis and treatment you are going to hear a lot of
    statistics, and some of them may be pretty depressing. In Debbie's case, we
    were told that 30-40% of ovarian cancers do not respond to Chemotherapy, and
    that a person with Stage IV Ovarian cancer has only a 15-20% chance of
    surviving for four years. But we refused to let these scary statistics get us
    down, because in the end statistics are just numbers and numbers cannot hurt
    you. Just because 4 out of 5 patients die within four years that doesn't mean that
    Debbie isn't that fifth patient. So we moved forward with treatment expecting to
    respond to chemotherapy and expecting Debbie to be the long term survivor.
    At best statistics just give you a rough probability based on the experiences of
    previous patients, but a probability is not a certainty. Use the statistics to help
    you make decisions about treatment options, but never let a statistic get you
    down. A positive attitude is worth much more, then a mere number.

Be prepared
    There are lots of little things that you can do to make life a bit easier during your
    treatment. Here are a few things that we did that worked out pretty well for us.
    1) We placed a pad of paper and a pen next to every phone so that we would be
    ready to take notes if a doctor's office called to set up an appointment or give us
    test results, etc.
    2) We made an excel spread sheet of all of Debbie's medications (name, dosage,
    frequency, and why she was taking it). We updated it whenever she got a new
    med, and we took copies to every appointment. At every doctor visit or
    procedure, a nurse will ask what meds your on or if there have been any
    changes - it is so much easier just to hand her a piece of paper.
    3) We bought a zippered loose-leaf organizer from the school supply aisle at
    Walmart, and filled it with blank paper, spare pens, section dividers (for each
    doctor and for test results), month at a glance calendar pages for tracking
    appointments, print outs of her medications, a copy of her healthcare power of
    attorney, some Kleenex, and contact numbers for all her doctors as well as
    friends and family. We kept this by the door so we could just pick it up on the
    way to her appointments.
    4) I also bought a fanny pack and stocked it with more Kleenex, some change,
    over the counter meds (like Advil, Immodium, Tums, and some bandaids), her
    insurance card, and an oatmeal bar (she frequently got hungry waiting to see the
    doctor). I grabbed this anytime we left the house.
    5) Stash Kleenex everywhere - in the car, all over the house, in her purse, in
    your pockets. Having cancer and dealing with chemotherapy can make you very
    emotional, and its not unusual for a few tears to leak out at the oddest times so
    be prepared.
    6) Prepare questions for your doctor's appointments and write them down. Once
    the doctor comes in, things can move very fast and it is easy to forget what you
    wanted to ask until it's too late.

Take notes
    I went to every appointment or treatment with Debbie and I tried to take detailed
    notes about everything. This let Debbie concentrate on communicating with the
    doctor (or nurse or technician), asking her questions or answering theirs,
    without worrying about whether she would remember all of the details. Even
    though the doctors will try to put things into layman's terms, they will still end
    up using a lot of medical language in order to properly describe the course of the
    disease or treatment. I can't even remember how many times we left the
    doctor's office and then we'd look at each other and ask something like "what
    kind of cells did the biopsy show?"
    The notes were also very helpful as the treatment progressed because we could
    look up exactly what had been said at earlier appointments for comparison. We
    could track Debbie's progress based on how much pessimism or optimism the
    doctor had shown over time.  

Keep a chemo journal
    Use a notebook or a even just a pad of paper to keep a daily journal of your
    symptoms and side effects as you go through chemotherapy. Write down
    everything you experience (physical and mental) with a little description of how
    bad it was. It doesn't have to be Shakespeare, just a list of your symptoms (e.g.
    Tuesday, May 4th - some nausea in the morning, minor joint pains, some tingling
    in my right foot, and severe fatigue beginning in the late evening).  This will give
    you an extremely valuable reference point during later rounds of chemo. I found
    that with each round, Debbie had a little harder time coping with the side effects
    and it was very helpful to be able to read the notes from previous cycles, then
    tell her that the fatigue should start easing off tomorrow and by tomorrow
    evening you should be feeling a lot better. It made it easier for her to bear. The
    notes were also helpful for identifying anything that was new. When Deb
    developed phlebitis in her right arm following the fifth chemo, we were able to
    immediately verify that she had not experience that type of redness or tenderness
    after any previous cycle. So we went right in to the office and got it diagnosed
    and treated.

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