› Forums › Cutaneous Melanoma Community › Almost 5 years NED, scanxiety and thank you
- This topic has 9 replies, 6 voices, and was last updated 6 years, 2 months ago by
BrianP.
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- November 14, 2018 at 3:17 am
Hi everyone,
I know I crave these type of updates for hope, so will try to pay it forward. We had scans and appointment at MD Anderson yesterday and today. Scans were clear. It's hard for me to believe. 8 hours ago, you couldn't have convinced me that we would hear good news. I've got just enough research knowledge to be dangerous and when my husband was first diagnosed in early 2014 and handed me the pathology, he had EVERY bad prognostic indicator: 22 mm once it was removed (even though they don't know if it was primary or metastasizd tumor). Dr. Amaria said she thought it was Stage 4 and thought it was metastasized, high mitotic rate, clark level V, etc etc.). It could be any stage, it no longer matters to us since.
MelanomaMike I was thinking of you today. In my 20s I was diagnosed with pretty severe panic disorder, so I feel like I'm LITERALLY not built for this type of stress. And my husband chose wait and watch which for people with anxiety is basically undoable for us with anxiety. If you would have seen me today before the results, you would have witnessed a pretty severe panic attack. Sobbing in the car, sobbing in the shower, crying in the waiting room and I'm not the one with cancer. The thought of losing my husband and my daughter losing her father is pretty overwhelming. This stuff is anxiety producing by definition. I ended up leaving to pick up my daughter before we met with Dr. Amariaand my husband calmly got the good news and was relieved I was gone ๐ And this is all from someone who works with statisticians on a daily basis that talk about survival models, cox regression, yada yada . That all flies out the window with scanxiety.
I can only say one thing for certain that I've learned through all of this, we need community during these times. I like to say and think that I can handle it, but I can't, hearing from this group and people in it has been the single most important thing to me, thank you Amie Taylor!, and sometimes has been the only thing that has helped. The other thing I learned is that if it progresses, we have a better shot at this than before, that's a big deal. I repeated that mantra today. And finally, I just don't shine in this area of getting results and that's ok. My talents lie more with after the results are in, let's get a plan of action.
Everytime I'm at the MD Anderson Melanoma and Skin Center, I look around and see if any of you are there. then i think about Josh, Artie, Adriana, etc and think they were sitting right here too a in the past several years and I miss them and I try to be strong for them.
Thank you everyone and special thanks to Amie. I'm literally at my best communicating with you all.
Many thanks
Jackie
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- November 14, 2018 at 3:28 am
Congratulations to your husband Jackie and also a great big congratulations to you too. In our case, I feel it was much tougher on my wife (caregiver) than it was to me the patient. With me it was very methodical, okay this is the problem, what's the best course of treatment. With my lovely wife it was pure, in your face anxiety. So Jackie, my hopes are that your husband has seen the last of the nasty melanoma. Peace be with you.
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- November 14, 2018 at 3:43 am
Hi Jackie.
I am so happy to hear your husband had clear scans. I was thinking of you yesterday when I was having my own anxiety attack because my son was having his scans. These were our first follow up scans since his diagnosis in February …needless to say I was a hot mess.
I am beyond thrilled to share his results with you…my son is officially no evidence of metastatic disease. The pediatrician also receives all my sons reports and she actually called me last night with the results knowing that I would be a wreck waiting….I burst into tears and I then proceeded to cry for hours and hours last night. I seriously could not stop…it’s like all that built up over the last 9 months and it just came pouring out. Talking to the oncology team today I was much better, which I am sure they were prepared for the reaction the poor pediatrician got last night…lol…
This is a very uninvited journey in all of our lives and I am beyond thankful to have found this community for support. No one understands your emotions and your anxieties like the group here at MRF.
Happy Holidays to you and your family!!!!!
Kelly ๐
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- November 14, 2018 at 4:30 am
Kelly, that's the best news I've heard today! And we got good news today but I think my husband would agree that we can't imagine if our child was to go through this, we would want her to be healthy no matter what.
Gosh, that just makes my day Kelly. I'll share with my husband. Sleep well tonight and so happy for you and your son. And good for your pediatrician to call you, that's a lovely doctor to understand that you needed to hear those words.
By the way I love the term hot mess, it truly captures the ridiculousness and randomness of this journey.
many hugs,jackie
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- November 14, 2018 at 11:16 am
Congrats, Jackie!!! On the great news regarding your husband and surviving (NO! Excelling in!!!) the role of melanoma care taker. My husband has spent his life as a pediatrician and pediatric intenisivist dealing with incredibly difficult life and death experiences for children and their families. I have seen him turn green (literally…. You know? You read that description, but I wasn't sure it could happen in real life…until I saw his transformation!) only once ~ upon learning of my diagnosis. I have always said the role of care giver is much harder than the role of patient. We patients would NOT be here without the support of our dear ones. Hang in there. And….enjoy!!! c
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- November 14, 2018 at 4:31 pm
Thanks Celeste, it means a lot coming from you ๐ I've been tracking your progress on your blog and researching your new condition, just for my own knowledge since YOU GOT THAT COVERED. I can only imagine the type of emotional fortitude it takes to be a pediatrician AND an INTENSIVIST, OMG, your hubby is one of the really really good guys (but that is not surprising since he's married to you).
I did see someone turn green and then pale once, but that is when he found out his first child was actually "TWINS", i've never seen anyone react like that, it was priceless. He just kept stuttering about the COST!
Many hugs to you AND your husband, what a team you two make and what a difference you both make to many of us out here
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- November 14, 2018 at 4:31 pm
Thanks Celeste, it means a lot coming from you ๐ I've been tracking your progress on your blog and researching your new condition, just for my own knowledge since YOU GOT THAT COVERED. I can only imagine the type of emotional fortitude it takes to be a pediatrician AND an INTENSIVIST, OMG, your hubby is one of the really really good guys (but that is not surprising since he's married to you).
I did see someone turn green and then pale once, but that is when he found out his first child was actually "TWINS", i've never seen anyone react like that, it was priceless. He just kept stuttering about the COST!
Many hugs to you AND your husband, what a team you two make and what a difference you both make to many of us out here
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- November 16, 2018 at 2:37 pm
Awesome post and news Jackie. So happy for your family. I will reiterate Celeste's sentiments, I think it really is tougher on the caregivers than the patients. Hope you can have a wonderful and carefree holiday season now that this scan is behind you.
Brian
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