Scans coming up

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  • #94770
    positivity
    Participant

    Julie,
    That is incredible! You give inspiration to others, and the blood count is amazing! So you are saying that the CC tumor is completely gone, or that the cells are dead in the tumor?

    #94769
    marions
    Moderator

    Julie……you and your husband are a fantastic team and have much to celebrate come July 5th.
    I can’t wait to hear the details.

    Hugs to both of you,

    Marion

    #94768
    iowagirl
    Member

    Marion….made MINE too. :))))). I feel like I’m a balloon in which someone stuck a pin…..I just need to collapse and sleep tonight. Unpacking can wait until tomorrow.

    Positivity….yes…..you are absolutely right….caregivers who truly care, go through the same experiences and emotions as the patients. My husband is my number one cheerleader….and I worry about him…..how the stress is affecting him too. We’ve been married for 42 years…as of this 5th of July and he is the love of my life.

    Julie

    #94767
    marions
    Moderator

    Julie….NO signs of cancer!!!!! This is the news I was hoping and wishing for. You so much deserve a break from it all. All the reasons to kiss this cancer’s backside and go on with your life.

    Congratulations, you made our day.

    Hugs

    #94766
    iowagirl
    Member

    We are home now from Mayo….two minutes in the house, and I had to post on here before another minute gets away from me.

    The scans today went well and the resullt was NO SIGN OF CANCER. The slightly enlarged lymph node and tiny lung nodules that were “concerning” three months ago are unchanged and of no concern right now.

    Blood counts were good (for me). For the first time in about two years, all three major counts, white, and red blood cells and platelets were within normal limits at the same time. My hemoglobin was 11.9 a month ago and has now gone to 12. 2. !!!!!!!!!!!

    Thank you for being here for me. Last night was a rough night….up until 4 a.m before I was finally able to go to sleep…and then up at 6 a.m to get ready to go to the clinic. I’m tired….but as you can imagine…feeling good.

    Love you all,
    Julie

    #94765
    positivity
    Participant

    Hi Julie,
    Interesting you say one day at a time, I feel the same way even if I am not the patient. Loved ones experience the same emotions as the individual with CC. I take these steps as if it is me. I hope positive results for scans, and I also get nervous for that day, but try to takes things into perspective and understand any outcome will be faced and acted upon with the best decision. You have been amazing going through this journey.

    #94764
    darla
    Participant

    Julie,

    Hope you managed to get at least a little sleep last night. So glad your hubby is at your side. Good luck with the scans today. Thinking of you.

    Hugs
    Darla

    #94763
    iowagirl
    Member

    Darla….I feel like I’ve been doing the “strong” thing for so long at this point……as I know it has been my only choice….giving up certainly isn’t. But….all the same…here i am ….not after 1 a.m and I can’t settle down to go to sleep here in the hotel room. The only redeeming thing about this is that my husband is peacefully sleeping nearby. I had a rough time when he went to bed…..shed a few tears…..but otherwise I’m trying to keep myself busy looking at some of my old genealogy land records research. You can’t read that old handwriting and think of much of anything else. LOL. I will probably give up in another hour and try to sleep a little before we have to get up at 6 a.m. You’re right though…one day at a time. I’ve made it past Thursday….and Friday is here. Julie

    #94762
    darla
    Participant

    So true Julie and may I add that we never know how strong we are until being strong is the only choice we have. :) One day at a time dear Julie.

    Hugs,
    Darla

    #94761
    iowagirl
    Member

    Darla…..yup….I am making myself “busy”. Busy, busy, busy! Today, I worked on cleaning out a cabinet and my countertop, then I had the 5 year old grandson here to play with me for a couple hours. After that…out for a pizza date with my husband and then sitting and staring at the empty cupboard, trying to figure out how to arrange all my medical, insurance, provider and tax files. The grandson was the highlight of my day, of course, but it felt good to get some stuff cleaned out….and in the process, I didn’t think about the CC very much. Tonight though, I’m actually sort of shakey, thinking about the next couple days. I always thought of myself as one pretty tough broad, but this CC has made me a bit more humble. And…..what I seem to forget during times like this, “When the going gets tough, the tough pray.” :)

    #94760
    darla
    Participant

    Julie,

    I like that quote and it is so true. What is going to be will be no matter how anxious and stressed we do or don’t get. Unfortunately, it is easier said than done not to worry. This may not work for you, but I read a lot and sometimes when I am stressed I try to bury myself in a good book. Some days it works, some days not so much. Fingers crossed that all goes well on Friday. At least then you will know what you are or aren’t dealing with and can work out a plan of attack if necessary. Take care dear Julie. Thinking of you.

    Hugs,
    Darla

    PS: Sun is shining brightly here this morning and I hope it is shining on you too. :)

    #94759
    iowagirl
    Member

    Thank you everyone for your encouraging words and thoughts. I’m “trying”.

    Spokanemom…..thank you….I have to remind myself to be kind to myself. It’s just very hard to deal with the one cancer, let alone the two…and to know that if one comes back, the second one will make treatment very limited and difficult and when the other comes back, all I’ll have is a hail Mary and likely very short time left.

    Catherine….at Mayo (Rochester) I usually have my blood work early in the morning, and that is followed by an MRI and CT scan. Then about 3 p.m the same day, I meet with an oncologist for the results. Occasionally, the situation is that they can’t get it all scheduled in one day and I have to meet with the oncologist on day two for results, but no phone calls…no waiting around for days or a week for results up there.

    Gavin…..I will fix a “cuppa” and imagine you are here.

    Darla….you aren’t far from us here in Iowa…so our weather is pretty much your weather…..and it’s been pretty dismal all of April here too. :(. That doesn’t help a lot.

    Marion….thank you…I’ve have Foundation One testing done….and at present there doesn’t seem to be any drugs for my mutations, except one in a trial when the testing was done last fall. Any trials I do must take into consideration that the trial drug can’t affect the bone marrow because it was chemo that caused the MDS and would likely drop me out of remission from the MDS. I have thought….what if they did Keytruda or other similar drug, say for a CC recurrence …to have it work….or even not work on the CC, but it fixed the MDS instead? So much has changed in the three years since my diagnosis in 2014….but with that MDS wrinkle, the scans are especially worrisome.

    I just posted something on Facebook tonight…..and it ended with something like , “Anxiety never changed what is going to happen.” Now, to convince my head of that right now.

    Love you guys,
    Julie

    #94755
    marions
    Moderator

    Julie……tons of good wishes and everything crossed for you on this end.

    I don’t want to believe and see no reason to do so re: a possible recurrence of CCA, but I would try to put things in perspective should the event occurs. (don’t think it will). Immunecheckpoint inhibitors as well as targeted agents are in the forefront of cancer research; some with astonishing results.
    Who is to say you wold not benefit?

    Thinking of you and sending tons of hugs your way

    Marion

    #94754
    darla
    Participant

    Julie,

    I agree with the others. Vent all you want & need to. What better place to do it than here where we all understand and truly care. Hoping all goes well and look forward to a positive up date. As for the weather, a GRRRR from me too. This was the wettest April we have had in a long time and tonight there is a frost advisory. This is May and I’m not liking this at all! I want sunny skies and warm weather.

    Hugs,
    Darla

    #94756
    gavin
    Moderator

    Hi Julie,

    Bleak drizzle, GRRRRR to that! We usually get loads of that over here and I can’t stand it, especially when you throw in the cold as well. We’ve just had the direst April in about 10 years here but usually this month has loads of drizzle etc, actually lots of months here have that drizzle, lol!

    You go ahead and vent and let off as much steam as you want to, you know we’re here for you. If I was there right now I’d make you a cuppa to go with the venting and hopefully that would help for a bit. But please know that I’m thinking of you loads and keeping everything crossed for you and the scan. Big GRRRRRR to scanxiety.

    Hugs,

    Gavin

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