The Waiting Game

When my kids were little I used to play a game with them called "The Quiet Game". The rules were simple, whoever could remain quiet the longest won. I used to announce that we were playing this game whenever things got too rowdy at home or too rambunctious in the old mini van. I would review the rules and follow it with a "Ready? Set. Go!" The thing about this game is that it never went quite like I planned. Within a few nano-seconds one of the kids would laugh then the others would start to giggle and point with each loudly proclaiming victory. The game NEVER worked. Not once. My whole life.

Well, I went to see my oncologist today. I really had been anticipating the appointment and the discussion of that growing little spot in my chest. I awoke early to shower and dress as my father-in-law had been in the hospital over night for a small procedure and my mother-in-law was at our home. I was driving her in and was hoping to get him dismissed and them on their way home prior to my appointment at mid morning. So like I said I was up early. I chuckled as I got dressed and mulled over what to wear. Something blue. Always something blue. I picked out a new top I had bought just recently that was an acquisition from a summer clearance rack. I really had meant to have it for next spring and summer, but the Indian Summer of Kansas had lent itself to the day and it seemed appropriate. I put it on. The morning progressed well and as planned my father-in-law was dismissed in a most timely manner leaving me just enough time to cross the courtyard between the hospital and my doctor's office. My bestie had text me that she was there and my husband called to say that he was walking into the lobby as I ascended in the elevator. When the doors open, I saw my bestie through the office glass and she smiled at me. I check in, get my patient pager and go pay my "cover charge". I have a seat next to one of the best friends on the planet earth and I spy my husband through the opposite side of the office glass as he exits the elevator. He comes in and we laugh and talk while we wait. We all know that the spot has grown. What we don't know is what he thinks about it. My pager buzzes and we all get up and follow a nurse to the back. She weighs me in, takes my vitals and takes down all the meds I am taking. She comments that I look thinner and I am grateful my daughter isn't there to agree. We can leave that discussion for another time. Anyway, with the data all in, she leaves us to wait for the good doctor.

We weren't waiting long when he taps on the door and lets himself in. He looks like a cornered dog a little bit and paces in front of us as he cuts right to the chase. He reviewed my PET and CT scan reports in front of us discussing how they are tough to compare to each other. Then he weighed in with his thoughts and ideas as to how to approach the damn spot in my lung. He did not ask me to play "The Quiet Game", he knows better than that. He did, however, ask me to play "The Waiting Game". He thinks to just remove the offending tissue is a risk to me that might not be worth taking at this moment in time. Having only the PET to compare to a CT is not the same as comparing two scans of the same kind. The data is fundamentally different so that could account for the variance in measure. No. It would be far more prudent to wait it out a little longer and monitor the little bugger for strange behavior. We will get a chest x-ray in 30 days. If it is visible on the film then we will get another CT and yank that baby out. If it hasn't enlarged enough to be seen on a chest x-ray then we will plan to CT scan my chest in late December. I understand his reasoning. My husband keeps asking me if I am okay with the plan. I feel numb. I answer that I am just listening. The doctor and my bestie have a quick conversation about metastatic disease and it's behavior. I hear them agree that it will show itself for what it is in time. I hear my husband say "that sounds good". The doctor examines me and I remain quiet, my brain unable to form a question. I know I have some questions because I feel confused but I can't seem to create one in my mind. I finally say "that sounds good" echoing my husbands words. I repeat the plan back to him and he confirms that he and I are in agreement. I suggest that treatment for me will be more customized to me personally since there really is no guideline. He says that I am correct in that thinking. We all follow him out to the good Kendra (one premium scheduler) and he repeats his instructions. I keep my pager for my port flush and kiss my husband goodbye.

My bestie stays with me while I wait and finally get my flush after which we leave together as we are parked in the same garage. On the elevator my numb and confused brain finally forms the question I could not seem to conjure up earlier and my eyes fill with tears. My bestie asks if I am ok. I nod. She looks at me and asks "What is it?" There is a man on the elevator and I did not trust my voice or the fact that I may not be able to stem the flow of tears once they started so I just shook my head no. When we stepped off into the lobby and the gentleman had left earshot I tearfully said "If it doesn't make a difference if we wait or not to take this out what does that mean? If this is metastasis it will just keep coming like "pepper" in my lungs. What else can we do? If this doesn't change my outcome, what will?" My bestie took her time to answer my blubbering questions. First she said if it is cancer it will grow like cancer. If it grows like cancer we will still need to take some out to prove what kind it is. I could get more chemo if it just keeps coming but we need to make sure it's the right kind. No, they won't keep taking out pieces if it "peppers" my lungs. I tell her I feel like a baby. She assures me that I am NOT a baby in the least. We walk the rest of the way to the parking garage with her telling me that I am okay and its all right to feel this way. It is normal. We say goodbye at the elevator and she gives me a hug and says she'll check on me later. When I get back to my car I have people to tell about this visit. So I sit to call and text. I don't feel "up-beat" so I'm not. Why lie? I feel flat and tired when I am finished and head home. I walk in the house to start playing "The Waiting Game". Ready? Set. Go! I am NEVER good at this game. Not once. My whole life.

Texas Jeff threw a punch at your cancer.
Mike, Annabelle sent you a hug.
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Michele-- I want to give you a big hug right now. I was so hoping to hear that your doc was ready to get you set up for the plucking of that spot and that very soon it would be past history. Waiting truly sucks! We both know that. I only wish that doctors knew that! I am so sorry you are playing the waiting game again. Such is the life of a cancer patient, I guess. Nonetheless, it sucks! Hugs to you, my friend. Martha
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You express beautifully the pain of waiting - the ambiguity and the sense of impotence. No amount of medical information about the whys of waiting ever assuage the agony of delay. "I spy" was more successful for me than the "quiet game". and when I spy cancer, I feel like not waiting, just like you. You are in my prayers.
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Michelle, The waiting - the unknown - the fear - all are nail-biting events. I've had my share and will have more. We will kick this nasty disease in its teeth - you, me and all our friends, Ron
Michele likes this comment
the waiting game has many names I call it " Hurry up and wait" These doctors don't want us to stress but they really don't get it when they want us to wait or it takes time for appointments, tests and scans!If they only knew the stress they, themselves were putting us under! Many of my doctors have told me stress is a huge factor in cancer and other health issues, they really don't get it. Breathe, do yoga, meditate anything just try keep your mind busy. Hopefully the time will fly and they will take that "spot" In the meantime I agree with Martha here is a {{{{{HUG}}}}} from me to you! Val
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My oncologist said today that I need to find joy in my life even with the possibility of dying from cancer. I have to look to God for the possibilities of life and that I am not like anyone else. You too Michele are one of a kind. The waiting game is frustrating. And bullshit. And I get it....Hang in there Michele....Don't forget to breathe....From one stage 4 anal cancer girl to another....
Michele likes this comment
Oh, Michelle - I'm so sorry you have to endure another round of waiting. Dealing with this disease is such a balancing act of tremendous upset and then establishing the equilibrium that lets us make it through another day. From one Kansas girl to another...!
Michele likes this comment
I had a spot on my lung after treatment, they watched it for 6 months and decided it must be scar tissue from pneumonia?? The spot is still there but has not changed in 12 months. HOpe the same outcome for you :)
Michele likes this comment
Hugs to you. Waiting, worrying, and the pauses in our lives because of cancer SUCKS!!! Stay strong. I ditto what Charity said about it being scar tissue. That is my prayer. Linda
Michele likes this comment
No matter what stage we are at we all seem to play the "waiting game" waiting for the next appointment, waiting for the next scan, waiting for the next result..... We have to keep fighting, we have to keep positive - sounds easy but it is not. I am now waiting for my next scan due December. I know the last three have been good BUT... Hugs Annabelle
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Waiting sucks. I guess the best thing to do is to just "DO" every day. One foot in front of the other. I have been reading articles about multiple scans and their risks for causing/spreading cancer. Hmmmm . . . A CT now, a CT next month, Hmmmm. . . Get a diet Coke-or whatever you drink, and watch Looney Tunes. Luv ya, Carol
I just found you on here and have read 3 of your posts and 2 have brought tears to my eyes. You are a beautiful writer and shed a different light on the subject matter at hand. I have two dreaded "spots" on my lungs that the docs (radiologist and oncologist) just sort of brush past but say we have "to watch". I always wondered about them and have brought it up a few times but they seem not to be very worried about "them" at this point. This is the first post I've seen on here since I found the site end of July (after I just barely finished treatment). I'm waiting along with you and hoping for the best too. Thank you for your posts. Hugs to you!
 ... post about "spots" on the lungs. I forgot that part in my post above.
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Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

As much as possible

Proceeds from my published blog donated monthly

It is a thief

You have to live every day of your life and stay positive :)

Donate $$ to the anal cancer foundation. Raising awareness saves lives!

Is there anything good about poison?

Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

Bland diet, sitz baths, take your drugs...nobody gets extra credit for suffering.

Talk, talk, talk to somebody. I chose to write.

April 20, 2010

September 20, 2010

Rectal bleeding, itching, sciatic pain. (thought my hemorhoid was acting up)

My blog has been published and proceeds go to The HPV and Anal Cancer Foundation. http://tinyurl.com/72bjjfp

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