The Cancer Diagnosis Home Game

The Cancer Diagnosis Home Game

Diagnosing cancer can be a long and unforgiving journey, and for me, it was lengthier than most.  I had a three-month adventure that took me winding through a Candyland map of different diagnoses, and I didn’t even get to stop at Ice Cream Floats. By the time I was done, I had anaplastic large cell lymphoma, but the course I took was anything but straight.

It all started for me about two years ago when I woke up in the middle of the night with a burning in my belly.  It felt like I’d eaten too many atomic fireballs and washed it down with drain cleaner. I was pretty well convinced I had an ulcer, so I ate a bunch of tums and went back to sleep. That worked for about a year, but then things just got too painful to continue, so I made an appointment with a local GI doctor. She scheduled an endoscopy for a month later.  I never made it.  A few days before I was scheduled for the “stick a camera down your throat” procedure, everything went to Hell in a handbasket.

Early morning procedures

Sitting in my tv room, fighting the pain of my “ulcer,” I suddenly began to throw up.  Oatmeal, rice, water, air – it didn’t matter.  After two days of that, I knew there was something serious going on, so it was off to the old ED again.  I’m a frequent flyer there, so I had my punch card ready.  One more emergent situation and I got a free EKG.  So, long story short, I was down a couple quarts of blood due to internal bleeding, so they topped me up and admitted me with an endoscopy to follow the next day. 

The sun rose that next morning and they took me down to the endoscopy suite at 5:30am.  For some unknown reason, they do the procedures very early in the morning, which sucked because I was finally getting the first sleep I had in a month.  They put me under and stuck that camera allllll the way down.  Unfortunately, all the way wasn’t very far because it was blocked by my swollen duodenum – the tube that connects the stomach to the intestine.

Diagnosis 1

Because of the observed condition of my bowel, it was assumed I simply had a bleeding ulcer due to years of NSAID use.  It meant a week in the hospital with little to no food, and a repeat of the procedure that weekend.  So, that’s exactly what happened, and although my bowel was only a little less swollen, they let me go home to recuperate.  It didn’t take.  I was back in the ED two days later with uncontrollable vomiting and an uncontrollable opposite end.

Diagnosis 2

Since the ulcer wasn’t getting any better and they didn’t have much of an idea why, I was sent for about five cat scans.  After the fifth one I was starting to “meow,” and someone asked me about a family history of cancer and tumors.  Not being an idiot, I immediately asked why they suddenly were so interested if my uncle Giuseppe had a carcinoma when he came through Ellis Island and I got the answer we all dread: “well, we see a shadow on the cat scan, a mass.”  Dun, dun, dun!  A mass.  It’s 2018, we all know a mass means a tumor, and that’s exactly what they thought it was – a GIST tumor.  A GIST is a type of unspecified benign mass that grows in someone’s abdomen, and I certainly got it.  The gist, that is.  Not wanting to stay in a hospital which didn’t specialize in cancer, I transferred into Manhattan that night.

Diagnosis 3

Once I got into the new hospital, they ran all the tests again.  They said that because there was a growth (now not necessarily a GIST) holding open my bile duct and possibly eating my pancreas, I’d have to undergo what’s called the Whipple Procedure.  What’s the Whipple Procedure?  Well, it isn’t a procedure where the doctor squeezes the Charmin, I can tell you that.  It’s actually an extremely complicated surgery where they rearrange your indoor plumbing so that it connects like the green pipes in Super Mario Brothers.  In other words, sh*t still gets where it’s going but it takes a shortcut.  I was whisked up into the super luxurious VIP surgery floor, right next to where the Kardashians stay when they get their butts sucked out and shot into their lips.  I imagine.

Diagnosis 3.5

My rheumatologist, who is a brilliant doctor and an amazing person thought “hmmmm, does Daniel have a weird GIST tumor that doesn’t really have a cause, or does he have one of the two possible cancers that arise from RA and RA meds?”  RA can cause lymphoma and adenocarcinoma and since I have RA, he thought it might be worth a check, you know, for kicks and giggles.  So, they took me down for another endoscopy.  By now, I had submitted to so many that they were considering installing a hatch in my bellybutton. This time, though, they were going to bring home a souvenir and grab a piece of the tumor for all the world (and pathology) to see.  So they did, and then we waited.  And waited.  And waited some more.  We didn’t mind so much, the waiting, until they kicked us out of the Kardashian wing and put us in the local tv weatherman wing.  Then we complained that it was taking weeks to get a confirmed diagnosis.  Finally, after three months of total hospital time, we had our answer.  Probably.

Diagnosis 4

 
When the doctors came in to tell us they were going to treat me for lymphoma, they seemed happier than I feel they should have been, considering the news.  In fact, they said, “Good news! It’s lymphoma.”  And I said “Good? You must have a crap life.”  Anyway, notice I said treat me for and not “tell me I had.”  That’s because they were only 90% sure I had lymphoma because pathology still wasn’t finished testing.  I’m not sure what the Hell goes on down in that lab, but whatever it is they move slower than the guy at the McDonalds drive-thru when you’re running late.  Still, they decided a 9/10 shot was better than not waiting to start chemo, so they juiced me up that night, and the rest, as they say, is history.

Don’t worry until you know

So, as you can see, getting cancer diagnosed may not take as long as my own weird board game trip through four and a half diagnoses did, but it’s no picnic – for anyone.  It takes time, and during that time people worry and fret and worry some more.  So, if you know someone who is being tested, try to do your best to comfort them and keep them calm.  In the meantime, don’t play the cancer diagnosis home game and guess at something you can’t possibly know.  The truth will come out eventually and you will have more than enough time to worry.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (16)
  • Ann Harper moderator
    2 months ago

    Your story was so interesting to read and, in many cases, so typical. The same thing happened to my daughter Crystsl. She had a few different symptoms – the big one being night sweats. The doctors basically told her not to worry about it and go home. She was eventually diagnosed with Hodgkin’s Lymphoma. It’s such a shame because no one wants to go to the doctor to begin with and when we do, we usually know something is wrong. If only we had more than the typical 10 minute office visit. I was wondering if you got the whipple procedure?

  • Daniel Malito moderator author
    7 days ago

    @annharper Thanks, Ann! I didn’t end up getting the Whipple because they discovered with ALCL, alk+ I can be treated with just chemo. Thankfully! I didn’t want to get all my plumbing rearranged. Lol. Keep on keepin’ on, DPM

  • Ann Harper moderator
    7 days ago

    My friend almost had to go through that. It sounds like a rough procedure. I’m glad you dodged the bullet.

  • Aldrich47
    2 months ago

    Good morning Daniel!

    I am so sorry that you had such a rough and bumpy ordeal with your diagnosis. If it makes you feel any better I will say that I don’t think I have ever enjoyed reading a post about a diagnosis as I did reading yours. Such a beautiful sense of humor you are blessed with! You have so much in your favor just by your blessings of a outstanding sense of humor. We all know that your attitude/sense of humor is over half of kicking the old cancer right out of your body.

    Have a wonderful day and keep your chin up!

  • Ann Harper moderator
    1 week ago

    Laughter is the best medicine!

  • Daniel Malito moderator author
    2 months ago

    @aldrich47 Thanks so much for reading, and I’m glad that you laughed, that’s usually the whole point of the things I write, ha ha. I try to keep that attitude in every aspect but as you know, it gets difficult. Thanks for making it easier! Keep on keepin’ on, DPM

  • Ann Harper moderator
    2 weeks ago

    I also enjoyed reading your post.

  • WarriorWoman
    2 months ago

    Daniel Malito,
    So sorry for your road to diagnosis. It took dr’s more than a year to diagnose me with non-Hodgkin Lymphoma. Multiple tests, 2 bone marrow biopsies, infusions and what seemed like 300 gallons of blood taken for testing later, I was diagnosed with 1 type. A 2nd opinion pinpointed the exact diagnosis.
    It’s been over a year, I’m now cancer free and trying to return to my life as I knew it before cancer. Chemo took my hair, my strength but not my fight and determination. I try to share my story in hopes of encouraging everyone to be vigilant and adamant about their health. It took a year to get a proper diagnosis and I was already in stage 3. But I stuck with it, fought the battle and I am winning so far. My life wont be the same as it was BC (before cancer) but I’m alive to complain about it!! Chemo altered my taste buds, heightened my sense of smell, left me with gastroparesis and horrendous neuropathy but I strive on. I’m thriving each day and thank God for everyday I open my eyes and take a breath. I hope you stay in remission and continue on the road to great health. Please continue to share your story. If you reach one person and save their life, you have accomplished a great feat. Take care and be well.

  • Ann Harper moderator
    2 months ago

    You’ve had a pretty rough road. My daughter had Hodgkin’s and is now cancer free. She has decided to live life to the fullest and is happier than I’ve seen her in a long time. And…her hair is growing back! I wish you continued good health.

  • Daniel Malito moderator author
    2 months ago

    @warriorwoman Thanks for the positive wishes, and I’m glad that you are cancer free. Returning to real life is difficult, I also have a heightened sense of smell, though, so that’s weird, right? Thanks for reading, keep on keepin’ on, DPM

  • Carole McCue
    2 months ago

    Daniel,
    So sorry you had such a difficult time until the diagnosis. Sending you healing hugs🙏🏻
    Carole

  • Daniel Malito moderator author
    2 months ago

    @cmccue Thanks Carole, it was a long road, especially for my mom who I truly believe feels everything 10x more than I do. Thanks for reading. Keep on keepin’ on, DPM

  • Yolanda Brunson-Sarrabo moderator
    2 months ago

    Hi Daniel,
    I have to shake my head at the trials you’ve endured. I love the statement “Don’t worry until you know”. In due time we find out what’s really going on with us, sometimes too late, or not early enough. Though your course was late, I’m glad it came to a conclusion. Keep at fighting. Best!

  • Daniel Malito moderator author
    2 months ago

    @yolandabrunson-sarrabo It is a good phrase, now that I can actually do it. Granted it took me years to learn how to not go down that rabbit hole of “what ifs.” Especially difficult in this case. Thanks for reading, keep on keepin’ on, DPM

  • bluchs
    2 months ago

    Daniel Wow!
    Long and Unforgiving is an understatement.
    I am sorry you had to suffer for so long, not actually knowing.
    Knowing the truth is actually all empowering.
    I thought, that I had suffered a lot, and I did.
    But at least I knew from the beginning exactly what was wrong with me, and what I faced.
    I can not even begin to imagine the uncertainty, of not knowing what is wrong, having to feel like a Ginny pig, being poked and prodded etc.?
    WOW!
    Thank God, You finally found out, even though it was not good news, it was better than , Not Knowing.
    I am Praying for you still, as I have been since I read Your first article here.
    You have a talent for writing and the ability to introduce a bit of hummer, into such a painful subject.
    God Bless You My friend.

  • Daniel Malito moderator author
    2 months ago

    @bluchs Thanks, you always read my stuff and take th time to comment. It doesn’t go unnoticed! I find that humor is my own way to diffuse any situation, although not everyone feels that way I find out the hard way sometimes. (Don’t make a joke about the BBQ place next door at someone’s wake who was cremated.) Most of the time it goes off without a hitch, though! Keep on keepin’ on, DPM

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