My Strategy

The two most frustrating things that I’ve experienced as a cancer patient are the endless waiting and the lack of compassion.  With some forms of cancer, things happen fairly quickly after the patient has been diganosed…….but not with non-Hodgkins Lymphoma, particularly the indolent (slow-growing) types.  The indolent forms are usually incurable; the aggressive forms are easier to cure.  It doesn’t make sense, but it’s true.  In fact, “watch-and-wait” is a common treatment strategy for patients who are not experiencing symptoms due to their NHL.

My experience as an NHL patient has been:  diagnose……..then wait ten days to meet with an oncologist.  Test……then wait for results.  Test some more…….then wait for more results.  Treat weekly (4x) with Rituxan………then wait to CT scan…..and then wait for results.  Find out that the tumor hasn’t changed much……..then wait three months before attacking it again.  Then…….start chemo and wait three weeks between cycles……..  Wait, wait, wait.  If nothing else, I’ll learn patience from this experience.

The other thing that has amazed me is the lack of compassion from some of the health care professionals that I’ve met…..primarily the people that you meet first….receptionists, etc.  My gastroenterologist and surgeon have been great.  I like my primary care doctor and gynecologist a lot.  The chemo nurses have been great, too.  But why aren’t the people on the phone and the people scheduling my appointments more compassionate…….or efficient……

My oncologist knows what she’s doing……I trust her judgment….but, at first, she talked more to my file than she did to me.  So……my strategy has become:  be the bubbly, young cancer patient (still…….occupying a very small demographic group at my doctor’s office) who is uber-educated about her condition (well……I try to be anyway).  I greet everyone at her office by first name and they’re happy to see me when I come in.

I have a strategy about my hair, too.  At this point, I’ll be glad to see it go.  I haven’t colored it since September and I desperately need a haircut but can’t see the point in paying for a cut when it’s gonna fall out soon anyway.  And just think of the savings in hair care products!

The most important strategy is to maintain a positive attitude and a good sense of humor.  Blogging has been great, too, and staying as involved as I can, with my dogs, has been very good medicine……


11 thoughts on “My Strategy

  1. Pingback: » My Strategy

  2. Bravo, Carrie! Having gone through the ups and downs supporting friends and family with cancer throughout recent years, I have found your attitude to be the most uplifting and inspirational … ever!! Proud of you!!

  3. Since you brought up your hair, having gone through this with my mother-inlaw….Your hair will come out in clumps, and this can be a little dramatic especially if it’s long. While going through treatment, my mother in-law came to me and asked me to shave her head…So, I put my attachment comb on my dog clippers and shaved away. You may want to consider “going short” before it really starts.

    You have a beautiful face that will look great without hair in the way! 🙂

  4. I’ve got the #15 blade on the clippers, ready to go! 🙂

    My doctor said yesterday that my hair may just thin….rather than losing it all. We’ll see. I really need a haircut but I hate to spend the money now and then have to redo it a week from now to compensate for whatever was lost.

    You’re right, though, I would like to cut it short now……I just don’t wanna spend the $$$.

    Actually, it’s the eyebrows that I worry about losing. They affect the expression so much. And I know that if I tried to draw them on, it’d end up looking like a two-year-old did it. 🙂

  5. When Allie’s mom was about to lose her hair from chemo, she would let Allie and me try our luck at being hairstylists. We had fun giving her ridiculous mohawks and mullets before we shaved her hair off for her.

    Perhaps you and Amanda would also have fun trying out hairstyles like this:

    before you lose your hair. 😉

  6. “Actually, it’s the eyebrows that I worry about losing. They affect the expression so much. And I know that if I tried to draw them on, it’d end up looking like a two-year-old did it.”

    Use a soft smudge pencil (Clinique makes a good one) in a light brown shade. With a light hand make short quick strokes in the shape of your eyebrow. Next, with your index fingers very gently brush up over the lines so it doesn’t look drawn on…If it still looks too “Groucho Marks”, take a tissue and place it over the drawn eyebrow and press…That will lift some of the color. 🙂

  7. I am Larry’s cousin and an R.N. I worked as a chemo nurse among other jobs at the hospital and have been trying to think of something encouraging to tell you.

    I was just glad to see you have the port placed because you will not have so much pain.

    I was touched by your comment about lack of compassion in the medical field because I saw it while working with my peers. I just always thought what if that was me what would I want and always tried to find out what the person/patient needed.

    It is the little things that should be so simple that are so frustrating like trying to pick up a prescription and not having to have the insurance pass you off, then the pharmacy, then the doc office.

    I think some of the staff just go through the motions or stuff it in because the real hard issues are just very difficult to face.

    But there are great ones out there. I remember working in a nursing home and there was this lady, nurse’s aid, that was skin and bones. She would lift those patients in and out of bed from the minute she came in to the minute she left. She loved those older folks and even though the pay was poor she could not leave them.

    That is my rant for now.

  8. Pingback: CVP and Hair Loss « Carrie’s NHL Blog

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