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Thread: So many tests....and a poem

  1. #1
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    Plz answer. I have no support/family left. Nowhere else to turn

    This will be long and probably all over the place. Bare with me please.

    In 2009 an ER doc noticed I had swollen nodes in my neck. He asked how long they had been swollen...I wasn't sure.
    He referred me to a lump specialist and scheduled an ultrasound. I got a core sample taken from a node...inconclusive.
    They had me on a watch and wait. Talk about scary. But I got used to the routine visits. And felt they really were nothing. Well on my most recent 'routine' visit with a new doc they noticed that my nodes are quite a bit larger. And everywhere. Reactive thickened nodes under my armpits, groin, neck, behind my ear and in chest. She was worried. Radiologist said "consistent with lymphoma or leukemia"!!! Never even considered the latter...or had it mentioned.
    She asked how I have generally been feeling. I told her "'I feel unwell all the time, drained, pressure headaches from node behind ear, really sore lower back, muscles feel sick if that makes sense. Also weird nerve like pains in my feet, and thigh bones feel pained but the pain is unexplainable"' she ordered more blood tests. Said my platelets have been low for over a year. No one mentioned that. Wbc is always "a little high but not worrysome" (Not sure the numbers). Xray showed deterioration in lower spine...most likely osteoarthritis. I'm only 34?!?
    Been having extreme, drenching, gotta change the sheets sweats for almost a year now. In the past few weeks I have been getting odd and very aggravating pain deep in my bones. Like no matter how I try to soothe it I can't reach it. One day it will be my forearm...next day shin bone. Some days nothing.
    I'm waiting on some excisional biopsies...three weeks and still no surgery day. She also mentioned bone biopsy. More blood work papers to get done ... again...seems almost weekly. She said everything points to the c word but "we are being proactive and there has been so much research done and so many treatment options available". " don't worry, you are young and seemingly pretty healthy" . Well jeez thanks but no thanks...Still terrified. I feel like my body is getting sicker. My usual weight over the years has been about 130...but for the past two months I can't get higher than 115. She says "I wouldn't be concerned about the weight loss". But I find myself on the scale constantly.
    I wish she would get these biopsies done already...
    I'm lost. What else could it be. She says everything leads her in only one direction...so why am I still waiting?. I know. I'm rambling. Sorry.
    I wrote this poem last night. I'm lost....could use some words of hope/encouragement.

    **no way to live**

    Omg I can't handle the pain, feels like I'm actually going insane.
    Shin bones, arm bones, hands and back,
    Is it actually cancer? Or something I lack.
    I can't sleep or even relax,
    My mind is my enemy, I want my life back.
    I cry cause I hurt, I cry cause I'm scared,
    This is so crazy, I feel impared.
    Please God please, just offer me strength,
    Ill do anything, at any length.
    I'm tired and weak, and always sad,
    I'm not the mother I should be, and I feel bad.
    Too many questions, racing my mind,
    What is wrong with me? And what will they find?
    I don't want to wonder, like this I can't grow,
    I'm desperate and worried, I need to know.
    I love my kids, my partner, my life,
    Why oh why do I suffer with strife.
    Constant arguments inside my head,
    Always hiding, safe in my bed.
    I pray to my lord, for comfort and hope,
    To help me find courage to smile and cope.
    If Mum were here I would not be so terrified,
    Why did she get sick, why did she die.
    Do we share the same outcome of early dismissal?
    I guess I keep wondering till my ref blows the whistle.
    Last edited by Mommymeg; 01-11-2017 at 02:55 AM. Reason: Misspelled alot of words

  2. #2
    Moderator Top User BobInBonita's Avatar
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    MommyMeg,

    I'm so sorry you had reason to find us, but glad that you did.

    I've moved your post to the"Worried" forum since you don't have a diagnosis yet. One of the things that you'll see over and over again is that you don't have cancer until a biopsy shows that you do. There are so many symptoms that can be identical between various diseases and cancer that many of the people here in the "Worried" forum never have a reason to come back. Hopefully, you'll be one of those that writes back with good news only.

    The stress and worry that goes along with waiting is something that every one of us has dealt with - at least once. We get it. If keeping busy with children (just guessing based on your screen name and age) isn't enough to keep your mind off of "what could be - but might not", then talk to your Dr about it. I have found that a very low dose of Ativan (0.5mg) is enough to keep the occasional "worry-fit" far enough away that I can function well.

    My best wishes that thing go well and that your worries turn out to be nothing serious, but if they turn out to be something serious, we're here to answer whater questions we can.

    Bob
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  3. #3
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    Thanks Bob.
    Yes Mommy of 5.
    Lost Mum to an inoperable tumor on her portal vein, so it's all so real for me. And I see its also too real for you. You have given my head a polite cyber shake. Thank you.
    Best of luck to you.
    Your words are encouraging...thank you.
    And an ativan probably would help. I've never taken one. Does it last long? Does it alter how I feel or just relax me? I try to avoid meds...

    Meg

  4. #4
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    Ok. So I finally got a call for the biopsies. I go meet the surgeon on Jan 18th.
    I should feel better now that things are moving forward. But I feel scared (no ativan yet).
    I just have a couple questions for those that have dealt with some of this stuff.
    *What can I expect at my appointment and what should I be asking the surgeon ?
    *I assumed that they would only need to cut about an inch in either spot to do the excision. But I'm finding out that is not such the case. How big of a scar will these leave?
    *And lastly....if they are removing nodes then what will aid in the healing and prevent infection? If it does turn out to be leukemia or lymphoma as they suggested....doesnt it get the upper hand with no nodes to travel to and protect me?
    I'm trying to avoid scary Google so tia for any help/ input you can offer me.
    Oh...and Should I be requesting lab reports of all my bloodwork etc?
    Last edited by Mommymeg; 01-11-2017 at 02:53 AM. Reason: Spelling error

  5. #5
    Moderator Top User BobInBonita's Avatar
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    Quote Originally Posted by Mommymeg View Post
    Thanks Bob.
    Yes Mommy of 5.
    Lost Mum to an inoperable tumor on her portal vein, so it's all so real for me. And I see its also too real for you. You have given my head a polite cyber shake. Thank you.
    Best of luck to you.
    Your words are encouraging...thank you.
    And an ativan probably would help. I've never taken one. Does it last long? Does it alter how I feel or just relax me? I try to avoid meds...

    Meg
    Meg,

    Sorry I didn't get back to you sooner on this post.

    If you can possibly keep worry at bay without resorting to meds, that's always the best way to go. At the same time, I've learned that at some point worry (or lack of sleep because of it) makes me function at a lower level. That's the only time I use something. Having something here at the house seems to make me feel a little better, just knowing that if it gets too bad I have another way of dealing with it.

    Every one of us reacts differently to meds, but for me the best way to describe what Ativan does is it makes things feel less personal to me, just a little more abstract. I can still think clearly about things, make decisions, etc. but without that gnawing "up-close" kind of worry that can otherwise happen. I think the 0.5mg is the lowest dose they make. My wife has a prescription for it also and actually breaks the little tablets in half. At a low dose like that, it has a subtle effect and it's really hard to tell when it has worn off. Hours later I realize that the "acute" worry just hasn't been bothering me for quite a while.

    I hope I don't sound like a drug pusher. By all means if you can avoid taking meds, it's better to save them for when you really need them. If you do have something that is occupying your mind to the point of distraction, then that in itself is a risk and you have to weigh which is better for you. It's really a decision between you and your Dr. about how to best live your life.

    I see you have another post with specific questions about the biopsy. My biopsies have all been different (fine needle vs excisional), so someone else will have to answer some of those questions. There is a sticky with quite a bit of information at the top of the lymphoma forum. I used to keep copies of all lab reports, but it got too cumbersome. I now have a spreadsheet with routine labs listed in columns and dates across the top. Pathology, surgery, and biopsy reports I try to get or convert to pdf files that I can take to new Drs on a thumb drive or CD. At this point, you don't have a positive biopsy. A simple hard copy is great and you can organize later as you need to.

    Best wishes to you.

    Bob
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  6. #6
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    Thank you Bob

  7. #7
    Administrator Top User ChemoMan's Avatar
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    Hi

    I had two excisional biopsies one under my arm and the other on my neck...you would be hard pressed to see the scars today as they are virtually invisible. It is a minor operation and nothing to fear. As for the removed nodes there is no issue as you have plenty to spare. They only need one and you have anywhere between 500 to 600 of them.

    Good luck
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  8. #8
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    Thank you. Very reassuring!

  9. #9
    Administrator Top User Kermica's Avatar
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    Mommymeg, I hope the excisional biopsy will get you the answers you need, regardless of outcome. I have had three such procedures done and ChemoMan is exactly right - small incision and small, almost unnoticeable scar after healing.

    As far as your meeting with the surgeon, there is not a lot to ask, really. He is the mechanic hired to get the samples needed by the pathologist to get to the bottom of your issues. My biopsies were all done in day surgeries, light anesthetic and home that same afternoon.

    It is my hope that your path report comes back negative for lymphoma or leukemia (or anything else malignant, of course). If that is not the case, then we will be here to support, to inform and to listen. Good luck with everything and let us know how things go for you.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

  10. #10
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    Kermica,
    Thank you!
    I really am hoping for the same, reading these forums though has really made me feel confident that no matter what the outcome I will be ok!
    I've been put on a 'wait and see' for so long...and now things are progressivly worse.
    My new doctor (due to moving) at least is being really great. Last one thought my nodes were swollen from mono. (All over my body?). And failed to mention my low platelets and increase in wbc. New doc is the one that is concerned...I was quite happy thinking my body was top notch.
    Apparently my nodes have quite a bit mor thickening that also was never mentioned...I didn't even know that was a thing.
    Anyways...I'm rambling again
    I'll keep you updated if you care to know...or just for other "worriers"

    Meg

 

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