› Forums › Cutaneous Melanoma Community › Needing to vent…to folks who understand
- This topic has 6 replies, 6 voices, and was last updated 5 years, 6 months ago by
lkb.
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- May 31, 2019 at 4:22 pm
Forgive me if this post seems like a “woe is me” post, it is not, because I truly believe I am the most blessed man on earth. That said, today is just one of those days when I feel the weight of the world on my shoulders.Been pulled off all treatments due to adverse reaction to ippi (after having done a complete cycle of nivo only to have my PET light up following last infusion), hypophysitis is no bueno. Doing PT on my left arm due to removal of lymphnodes and tissue in February. New melanoma on right arm (they though in situ) turned out to be Stage II nodular, surgery in March. On Dexamethasone, Androgel, hydrocortisone, levothyroxine, antibiotic (thanks staph infection), and daily nystatin for thrush. My teeth are virtually falling apart, I am constantly fatigued. My circadian rhythm is all out of whack (developed narcolepsy), libido is non-existent (wouldn’t matter if it wasn’t since testosterone was a whopping 9 and 17 last two test), muscles are atrophying at alarming rate, appears I am developing lymphedema, and nightly I am having muscle cramps and seizing of the muscles in my legs so bad that I can barely walk they are so sore.
Add on top of that I am trying to actively work my law practice (only 15 cases behind), complete the refinance and remodel of my home, help take care of my mother (congestive heart failure, COPD issues, and insulin issues 3 year pancreatic cancer survivor and ovarian cancer survivor), Dad was diagnosed with advanced bladder cancer last week (melanoma and colon cancer survivor), buried my Aunt (like my grandmother) yesterday, my Uncle Joe three weeks ago (liver cancer, diagnosed and deceased within 6 weeks), and raise my five children ages 10, 9,9, 5, and 3; while 4 of the 5 participate in baseball and softball, church camps, family vacation, etc.
In addition, my wife and I (we were separated for two years) are attempting to patch things up and got back together in October, so there are those issues to deal with as well. Doing bi-weekly marital counseling, reading tons of books on repairing marriages, self-help, etc. Bible plans, Christian counseling, etc. All the while, my wife has recently started her new business and dealing with some health issues in her family as well.
Today it just feels overwhelming and I found myself just breaking down and sobbing for a moment after showering this morning. I fully rest and stand on the promises of God and am usually the most optimistic individual you will meet (maybe to a fault). I really just feel like punching something or screaming out loud, or maybe going to the rifle range and getting some trigger therapy. UGGGGH!
Thanks for allowing me to vent. It feels like nobody in my household is very sympathetic to what I am dealing with and how my body feels. They see me as a whole, strong individual, but inside I feel weak, fatigued, hurting, and completely worn out. I need a rest, and I need someone to say “let me take care of you.”
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- May 31, 2019 at 5:01 pm
Glad I’m not you ….I’m joking, but – yeah – that sounds like a lot to deal with. Not much to say besides … keep putting one foot in front of the other. And if you’re a perfectionist … get over it, because you’ll never keep all those balls in the air 100% of the time. Good luck to you.
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- May 31, 2019 at 6:03 pm
Well I certainly feel better about me!!I would say your muscle cramps are almost certainly a result of the steroids and hopefully most of the other issues will subside with the steroids. I didn’t have issues as bad as yours but had the pituitary issue and liver problems. I stopped treatment in May last year and started Nivo again in March after progression and feel ok at present and no side effects yet. I know of others who had severe side effects and went back to ipi / Nivo after a break with success so don’t give up hope yet.
On the many other things you are trying to juggle – remember you aren’t well either and need looking after. Try to find some help or stop doing some things – you can’t do it all and your health is as important as your parents if not more so as you have kids that depend on you.
I wish you my best
Mark
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- June 1, 2019 at 8:13 pm
You have a ton on your plate, wow. Everyone is allowed to breakdown and vent and you certainly have more than your share to vent about. I come from a family of five kids and I now wonder how my parents even got out of bed most mornings ll! Know this, even though your parents are also having medical issues, they would want you to take care of yourself and your kids first (that’s what parents do). I remember taking care of my father who was quite ill and my young child and there were days I would cry, my dad would cry and my daughter would cry as a toddler, I didn’t know who to take care of first and I only have one child! But I knew in my heart that my parents would want me to always place myself and my child first, no doubt so that helped me prioritize. My aunt also told me if was okay to get help taking care of my dad, she said it was too hard to love them AND take care of them most of the time, so I should let many others help so I could focus on loving my parents. i’m wishing you the best and that your marriage gets stronger if that is the goal, etc. Reality and optimism sometimes clash, but optimism can still coexist even when you are beaten down. I think sometimes people confuse having a bad day with being cynical, it’s not the case. It’s just part of life. But don’t listen to me on optimism, I’m George Carlin’s biggest fan so optimism isn’t really in my wheelhouse so to speak 🙂 I’m hoping you have some relief this week.-
- June 2, 2019 at 2:03 am
dear jc2dad, you have a lot on, and its fine to vent, why not?
Like MarkR and the ithers here, my advice, jf any, would be whether you can cut some things down? Its great that you are so responsible, but also you must look after yourself, and to try to get all these side effects under control. Then you can get your work sorted out (i guess everyone depends on you financially too), and only then your remodelling and all the kids events. With all my treatments i tried to remain pretty active, but doctor appointments, blood work, scans, infsuions – these all take it out of you, and take time. So i hope others can realise this, that this is serious, that you are going throught a lot, and need to be cured. After that then you can help out fully but until then you cannot do all.
Good luck and hope you will be able to prioritise and take some burdens awaty
Best wishes Mark
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- June 8, 2019 at 1:53 am
Congrats if you got out of bed the next day after writing this. And congrats if you didn’t (Really!), cuz I’m not sure how you do it. Can you work less and get help with the caregiving for others? Can you tell your family members what’s happening and give them the chance to care for you? As a bonus, you’ll be showing your kids how to ask for help when they need it–a lifelong skill. Thanks for venting. Wishing you all the best.
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