cancerchondriac and to trust some more

February 19, 2009
– declared cancer free!  What unbelievable words to hear, really, I mean unbelievable.

Hearing you have cancer and then going through months of treatment and then being declared cancer free is a mixed bag of emotions.  I was delighted and relieved to hear those words but there was a part of me that did not want to believe what I heard.  Allowing this cloud of hesitation put me in control of not being back-handed again by the diagnose, “You have cancer.”  That statement was so shocking, I was not going to allow myself to believe I would remain cancer free.  If I allowed for that chance then I wouldn’t be shocked.  There, I am in control and if and more likely when I relapse, I am already emotionally prepared.  Doesn’t that sound crazy?

The bummer about cancer is the treating oncologist makes it plain they can not use the word “cure.”  Since the doctor cannot say you are cured and there is no chance of the cancer returning, this can create a sense of dread in your thinking.  (I wish cancer could be treated like a cold, you get over it in about ten days and if you don’t, you are prescribed an anti-biotic to assure you get over the cold.  Chemotherapy is not like an anti-biotic; it kills the cancer cells but you are not guaranteed that one cancerous cell remains and is lurking waiting to wreak havoc on my life again.)

And then there is the precious “five-year” mark.  If you can get to five years your cancer will more than likely not return and just maybe the doctor might use the word “cured.”  But, yes, there is a big BUT . . .

It doesn’t matter how long you have been cancer free, you will always be a cancerchondriac.  The degree to which one is a cancerchondriac will vary, but nonetheless, there will be a quarter-inch sized square in your brain that entertains the “what ifs.”  (Please read the well written article by Betsy deParry, “A decade after a cancer diagnose: musings on life,” a previous post on this blog.)  I can bear witness that in the first year the brain is pretty much occupied by the capitalized “WHAT IF”  but as the years pass the occupied space becomes smaller and in lower case “what if”, thus down to a quarter square inch.

I have heard from 8, 10, 12 year veterans of survivorship still going through “scanxiety” as their annual appointment rolls around.  As a survivor, the first year post treatment you generally see the oncologist every three months, then the doctor lengthens out the visits to every six months until the you hit that five-year mark.  After that precious milestone, then the appointments become annual but regardless how many years have gone by the survivor still has a sense of dread, maybe a little, maybe a lot.

And, I hear from our veterans even after years along in their cancer free living if an odd ache pops up, a questionable hitch, a bump, a shadow on a xray that quarter square inch grows and the lower case “what if” has two or three question marks behind it and darn, that cloud of hesitation returns until the doctor proclaims, “That is nothing to worry about.”  Then one thinks to oneself, how silly, I over reacted.  Heck, yeah!

So addressing “to trust some more” is the name of the game.

My CBC’s (routine blood draw measuring red, white and platelet counts) show that my red count is not normal, it does not fall into the normal range, it is below.  I’ve seen wacky lymphocyte and monocyte counts, A/G ratio out of the normal range, LDH is a little high. I wonder what is going on?  If the blood test results show I’m out of range in one way or another I compare it with past months results, is there a trend?  And then not knowing what a lymphocyte or monocyte is, let alone an A/G ratio and a LDH, I look up the terms so I know what they are and do and if all this is bad.  I bring it to the doctor’s attention.  Can I trust you with this?

And then there is the “bump.”  The bump was how my lymphoma manifested so now when I find a bump does that mean . . . ?  One lymph node is a bit larger than the same node on the other side.  Asymmetric = not normal.  (With this one my “what if” did capitalize into “WHAT IF”)  So I skedaddle to my oncologist!  And her comment is it is not large enough to be of concern.  Well, are you sure?  Maybe you’re wrong!  Can I trust you on this?

And now it is time for my annual appointment.  I first scheduled my appointment with my local oncologist here in Kalispell.  A part of the routine annual exam is a full blood panel and a CT scan.  Now I have come to rely on my blood tests, if I’m going to relapse it will show up in the blood work.  Also, I rely on the CT scan to show us what we can not see – those hidden, internal lymph nodes I can’t feel to see if they are growing in size. If those two tests result in all is well, then for the next four months until the next blood draw I am assured the cancer has not come back.  And so it goes.

However, we planned a camping trip that takes us through Salt Lake City.  I thought I might as well make an appointment with my treating oncologist who is the specialist in hematological cancers.  You see, my doctor here is a general oncologist and he just might not detect something amiss.  Remember, can I trust him?

So I am scheduled with Dr. Glenn in March.  She will test my blood and order a CT scan.  But wait!  I was informed by Nurse Debbie after two years post stem cell transplant Dr. Glenn no longer believes a CT scan is necessary.  What?  You mean to tell me I can’t look into my body anymore for those evil, possibly growing lymph nodes?  Can I trust Dr. Glenn?????

Trust.  I am learning trust is the name of the game.  My last three blog entries were on trusting God in all things including my body and my health and my future.  A huge lesson here, do not put my hope and confidence in blood tests and CT scans – even if they show something negative.  I am to trust God first and the skills and knowledge of my doctors second.  If the doctor tells me he or she is not concerned then I need to trust their decision.

I was once again relying too heavily on circumstances letting them dictate my response so that I might control my emotions not letting news (bad news) back hand me again.   My eyes opened.  One, just trust God; two, and trust the knowledge of my doctors.  If I relapse, eventually it will be found out through testing or otherwise.  Why anticipate it?  I have no control over this anyway.

So, I thought to myself, “It’s time to put my big girl panties on.”  I had cancer, I am now cancer free.  Don’t worry, in God’s book my days are already ordained and nothing will happen too soon or too late.  Trust God, He is in control!  (and I’m not, phew!)


2 comments on “cancerchondriac and to trust some more

  1. It’s been a little over a year since I finished my chemotherapy for breast cancer. I’m on the drug Arimidex and experience some of the worst side-effects of the drug. Like you, I’ve struggle with the label “cancer free”… really, I’m not a fan of it for a few reasons. I’ll spare you the details. My anxiety stems from the fact that when I go to my 3 month check-ups, there are no scans, no bloodwork, no nothing unless I have any “unusual symptoms.” I’ve seen a second oncologist for her opinion, and apparently, this is protocol for breast cancer patients who didn’t have lymphatic involvement. Needless to say, this has caused many sleepless nights and “what ifs.” I will say that the further out from treatment I get, the less I’m consumed by the “what ifs.”

    Thanks so much for reaching out to me and giving us this place to work out our faith and cancer together. Hope is really only hope when its firmly connected to the Hope-Giver–Jesus Christ!

    May God continue to use you for his glory as sow good seed for the kingdom!


  2. Bonnie says:

    Absolutely! We both know that we were given a gift of life extension from Go=
    d. We are living that extra time to the max. We have HOPE that whatever happ=
    ens we will be able to handle it together. We have HOPE that soon there will=
    be a CURE!

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