› Forums › General Melanoma Community › Learn something new every day
- This topic has 6 replies, 5 voices, and was last updated 6 years, 8 months ago by
WithinMySkin.
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- August 21, 2017 at 2:43 am
Hi All,
I keep learning new things. I've learned the worst place to have an IV when getting contrast for your CT is the wrist. I've had 5 CT scans prevously and it has never hurt. I almost jumped out of the machine but no more complaining. The scan looked good. Tumors are still shrinking. For some reason I thought there were only two left but it turns out it is three left. Not bad considering I started out with over twenty. This time around the oncologist mentioned that it could be scar not tumor. I didn't realize that it was possible to end up with scar tissue where tumor initially was. So we continue with nivolumab and wait for the MRI next month. If that looks OK then we will make a plan.
The other good news is that my hair is growing back after the brain surgery and radiation. It's almost an inch long and doesn't blend well with the rest of my hair. The style is a little bizzare. I actually went out to lunch on Friday without a hat. I should just go get a new style but I'm afraid to get my hair styled because of the surgical site. I know it's silly but I haven't wanted anyone near my head since the surgery.
Augut 29th, 2016 is the day I had my first CT scan and started this journey. As the one year mark gets closer I find myself looking back on the journey. The short version is that I fought with my primary care's help to get a biopsy. [My dermatologist of 10 years failed me.] CT scan at the ER; biopsy; stroke; 4 day hospital stay; Ipi/Nivo combo infusion 1; Ipi/Nivo combo infusion 2; extreme fevers, chills, nausea; 5 day hospital stay in the MICU with IV antibiotics and blood cultures to rule out infections; 1 day home with extreme nausea; IV steriods with another 5 day hospical stay. 2 months on high doses of prednisone and then cellcept; 2 months of watch and wait; brain tumor; brain surgery resulting in loss of feeling in right lef and foot; tumor regrowth at 10 days post op; targeted radiation and nivolumab. Seizure. Seizure meds. 6 months no driving. Did this really all happen to me? Has it really been an enitre year?
Who am I now? What's my new normal? Three forever meds. I'm a pill person now. Pills so I don't have a seizure, pills for my thyroid, pills so I can sleep. Injectable blood thinners. Pills to control the itching. I've got 3 more months on the driving ban. My right foot is still numb.
Apologies for the mega post. I'm sure many of you have been through so much more than I could ever imagine. You've come through the fire so I know I can too. Best to you all and thank you for being there.
Cheers!
Jennifer
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- August 21, 2017 at 3:19 pm
Wow you've been through so much! You are a fighter! I've been whining about my hospital stay and being sick but nothing compared to your story. I don't know you but I look up to you and your story gives me strength. I shall keep you in my prayers- Holly
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- August 22, 2017 at 11:12 pm
Thank you. I apprecite it. I know so many here have been through so much more than I have. I think I need to try to remember this is a marathon not a sprint. This is the place to vent and "whine". It helps me to hear others' stories so if I can help one person feel better for even a few minutes I've done something productive. I wish you well and hope you feel better soon.
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- August 21, 2017 at 3:44 pm
We are all learning new things every day – things we wish we didn't have to learn. But since this is our life now, at least we know and are gaining preferences for how we like to be injected, reviewed, treated, spoken to, etc with all the various doctors, techs, and office personnel.
What I am learning is not to over or underestimate what you/each of us has been through. There are times I feel sorry for myself, and other times where I feel my experience has been 'easy' relative to others.
Take care of yourself – I have learned that even 1 minute of meditating each day helps. I am currently a fan of the "Headspace" app – it has helped me to relax and connect better with the present.
May more good fortune come your way!
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- August 22, 2017 at 11:08 pm
Thank you. I'm definitely going to try out that app. I could use a little "Headspace"!
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- August 22, 2017 at 11:41 pm
You are so young to have gone thru all of that. Yet you take the time to be helpful and give advise to the rest f of us from your experiences. Thank you. Sharon (You have helped) Sleeping medication? Do you take melatonin?
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- August 27, 2017 at 1:28 pm
You have been through so much, Jennifer, and it sounds as though you're knocking out those 20 tumors like gangbusters! Please don't ever down-play your journey. We all have our own journey to go through, and no two people can walk the same path. You are unique and so is your treatement. This may sound strange, but your new normal is what YOU make it to be. You are who YOU choose to be. I'm a firm believer that all things happen for a reason if we can open our hearts and minds. No one WANTS to go through this much hardship, but makes us into who we need to become if we let go of our fears of the future. A quote from Nelson Mandela that I love — "I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.”
Wishing you health and happiness,Lauren
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