New Path report--, my cancer is back again, at Primary site.

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Comments

  • Stephie75
    Stephie75 Member Posts: 185 Member
    edited March 2022 #62
    https://csn.cancer.org/discussion/comment/1694698#Comment_1694698

    Suez, Very much so. I wish all of our energy with this concern could heal Crystal and make her suffering go away! I hope you are fairing well. I know your QOL isn't all that perfect. You are a beautiful person.

    Crystal, thank you for the update. I want to stress again, Please know you are not alone. You will ALWAYS have us here. No one should feel alone at a time like this. This has hit me like a brick, and I can't imagine the size of the brick that you are having to deal with.

    I would love to send you an Orchid. Are you at Wake Med when you are in the hospital? Also, I don't think there's a difference between a pajama party and a slumber party! You can have whichever one you like 😉

    Love ya!

    Stephanie

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #63

    Beautiful lady,

    Crystal, I am alternating between sessions of tearing up with sadness about your situation - and then amazement at your courage.

    I certainly would have guessed all of your friends at the hospital would do their best to take care of you; and you continue to display those incredible writing skills, that I have come to love!

    I think about you, every day - and I know ALL of us on CSN are behind you, and sending hopes, best wishes and prayers...

    You inspire us all, with your strength of spirit; we feel encouraged, just by knowing you!

    Curt

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #64

    Crystal,

    If you decide to write a book - please put me down for a copy!...

    Curt

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #65
    https://csn.cancer.org/discussion/comment/1694712#Comment_1694712

    I prefer a signed copy. :)

  • Stephie75
    Stephie75 Member Posts: 185 Member
    edited March 2022 #66

    Crystal,

    Did they give you anything, like a suction pump to get out?

    L/S

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #67

    Dear Crystal we are all here every day for you thinking of you and praying for you hoping for you to have good days and cherished days. Wishing you the best with continued hopes and prayer. Hopes and prayers for you and your family continue.

    Love ya gal💙💔Take care-God Bless-Russ

  • Suez39
    Suez39 Member Posts: 165 Member
    #68
    https://csn.cancer.org/discussion/comment/1694708#Comment_1694708

    Hi Stephanie,

    Thx for responding. I'm living on tubes to keep me alive, but I'm hanging in there. Im on a permanent trach and FT. I've had left ear pain for over a month now, and my ENT is concerned, since that may be a sign my cancer is back. He is trying to schedule a CT scan for me. I appreciate you asking about me. You are a caring, thoughtful, beautiful, person too!

    Is'nt Crystal amazing? She has,stage 4 cancer, with probably 3-4 more weeks, and she still maintains a sense of humor? And this horrible tumor she feels, just sickening. She is so very smart in her medical issues. Way better than me! I try to block mine out, since it gets me so upset. I have my boyfriend who stays by my side, and my mom and 1 cousin. So I have a small support group. But poor Crystal, she is alone where she is! How devasting. Makes me irritated. She should at least have 1 family member.

    Hope you are doing well.

    All my best,

    Susan

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #69

    Dear Susan so glad we can all help support Crystal in this difficult time. Amazing, I agree, she has always amazed me by keeping such a positive attitude and a sense of humor during her many situations. Susan sorry to hear of your ear pain and I hope you get your scan soon and it shows no problems. Hopefully, it is just a nerve thing or something that you can use pain meds for and it will eventually work its way out. I have a similar thing going on with my left cheek when I bite down I get a soreness feeling at times but both the dentist and my ENT have looked at the area and see nothing sore or out of the ordinary. So they feel it is a nerve situation I guess giving false signals. That is also the side I would have been more heavily radiated on. Just to add that I think Crystal's mother is nearby as just the other day she mentioned her mother was looking in her mouth. Maybe Crystal can verify it for us.

    Continuing to pray for Crystal in particular and our group in general-Take care-God Bless-Russ

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #70
    https://csn.cancer.org/discussion/comment/1694715#Comment_1694715

    Hi Stephanie,

    I have a suction pump and its never been used and I just now carried it downstairs, because I am damn Drowning in my secretions. Having trouble breathing through it all.

    See, my tumor has invaded and disabled structures like for swallowing and speaking and I now have Major trouble trying to expel.

    I have no idea how to work this machine but I'm going to figure it out because I'm drowning and choking. Its a big heavy unit, given to me by my Enteral supplier years ago with my first cancer. I guess I never used it because every time I was this bad, I was in the hospital.

    Thanks for asking !!

    How are you faring after your very recent radiation? Did they hit you hard with a high dose?

    I'm awaiting my Mask fitting, etc. I assume they are going to do my infusion on Tuesday first. I will be there all day long. It looks like no one is going with me. But I'm surely not going to drive myself.

    Crystal

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    edited March 2022 #71

    She has Finally responded to some of my questions, mainly from the standpoint of my breathing and Lung problems , witnessed yesterday in the Cancer Center hospital by my nurses.

    Read her message I just now received::

    I think that the benefit may not overweigh the risk. It is though the systemic treatment that is the most favorable for your case, but I think that it is not favorable enough. I agree with waiting for after the RT treatment to make a decision. Best. Electronically signed by: Mercedes Porosnicu, MD

    So, I guess now the next step is fitting me/ creating my new mask. And hopefully a chest X-Ray and perhaps antibiotics?

    Crystal

    I assume my day Tuesday is cancelled ... No word on it. She can be difficult to communicate with, as English is her Second language. She's from Romania. She is a caring physician, but for 3 years, she did not follow my case at all. The Emergency room doctor in June, a Hem/ Onc doctor, reached out to her srrvice, to see me while I wad inpatient then for pneumonia. I wss on 7 th floor Cancer center hospital 6 days, and she never responded!

    It wasn't until the biopsies of soft pslate/ tonsil area, and resulting Path report was she again called in to see me in clinic.

  • Stephie75
    Stephie75 Member Posts: 185 Member
    edited March 2022 #72

    Crystal,

    We are here and we are armed and behind you. Every. Step. Of. The. Way.

    You never go unthought of. EVER. I want to pound this in your head due to what you have said about being alone.

    WE are here. Every day. 24/7.

    We love you! By the way, I care about you a bit further than being bonded by cancer. We fought for a bit. You attacked me over things you had no idea about, but that brought me close to you in a weird way. My feelings are not just regarding cancer! I care about you are a person darnit!

    Steph

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #73

    Thanks for asking about me, but I am fine in comparison!

    I would love for you to just get in a comfortable position, and not go through any sort of torture.

    Please, Please tell them... For us. Please, you should not suffer!

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #74
    https://csn.cancer.org/discussion/comment/1694725#Comment_1694725

    Let us know how this works out and update, please. I have been losing sleep.

    L/S

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #75
    https://csn.cancer.org/discussion/comment/1694722#Comment_1694722

    Susan,

    Yeah. I will DM you. However, it's insane to me at times how much people hold it together. I just don't think I would be strong enough.

  • Suez39
    Suez39 Member Posts: 165 Member
    #76
    https://csn.cancer.org/discussion/comment/1694729#Comment_1694729

    Stephanie, I'm right with you. I don't think I would be strong enough either to handle what Crystal has. I would drown in my tears.


    Susan

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #77

    Crystal,

    I was thinking about you and wanted to check in. I’m hoping your day is ok, and you find some joy in it!

    We expect 64 degrees, today - and I have a Harley Fat Bob that needs exercise...

    Curt

  • Stephie75
    Stephie75 Member Posts: 185 Member
    edited March 2022 #78

    Do not go gentle into that good night, 

    Old age should burn and rage at close of day; 

    Rage, rage against the dying of the light. 


    Though wise men at their end know dark is right, 

    Because their words had forked no lightning they 

    Do not go gentle into that good night. 


    Good men, the last wave by, crying how bright 

    Their frail deeds might have danced in a green bay, 

    Rage, rage against the dying of the light. 


    Wild men who caught and sang the sun in flight, 

    And learn, too late, they grieved it on its way, 

    Do not go gentle into that good night. 


    Grave men, near death, who see with blinding sight 

    Blind eyes could blaze like meteors and be gay, 

    Rage, rage against the dying of the light. 


    And you, my father, there on the sad height, 

    Curse, bless me now with your fierce tears, I pray. 

    Do not go gentle into that good night. 

    Rage, rage against the dying of the light.


    Source: https://www.familyfriendpoems.com/poem/do-not-go-gentle-into-that-good-night-by-dylan-thomas


    I felt this fit you. You have been raging and fighting for years.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #79

    That Dylan Thomas poem has been popular for years. Just a couple years ago, one of the Big Pharma companies ( Eli Lilly? I don't remember who) had an Ad on TV, using that poem and promoting their phsrmaceuticals.

    I need this throat tumor addressed, Directly, soon. Its causing me big time problems ... Since they cannot do surgery band I cannot depend on that to give me relief ( from Choking, smothering on secretions , shortness of breath , reflux)---- then its going to have to be the High Dose Radiation and it needed to be Soon.

    No, I do not want to do all that over again but its either shrink this tumor, or else I have to seek help very soon. Its becoming quite intolerable.

    And when I lie down completely flat, as I will be doing for Radiation Twice daily----- I feel pain and pressure throughout my neck. This is going to be hard, but something Direct needed to be done soon.


    Thanks for the poem, Stephanie. Its very familiar to me. And I studied lots of his material in college .

    Thank you, Crystal

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #80
    https://csn.cancer.org/discussion/comment/1694778#Comment_1694778

    Yes, I know it's been very popular. It just reminds me of your strength.

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #81

    I don’t know a lot of poetry - but this is one I recall:

    On a day--alack the day!--

    Love, whose month is ever May,

    Spied a blossom passing fair

    Playing in the wanton air:

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