Just saying hello

Hi Jenn, deciding to stop is a very hard decision. I’m going through the same process right now. My oncologist won’t make me stop but they recommend that I can. It’s very difficult getting my brain to agree with the doctors, even though I understand where they are coming from. My plan is to stretch the next two treatments to six weeks, the following to three months, and then stop. It will be two years on treatment at that point. Still nervous about it but it’s my plan. Good luck with your decision.

Bill

Hi Jen, long see no time! iv been MIA as well, my "glands" have been acting up {wich is always it seems} but iv had a few good weeks so far! i hear what yer saying, its a different life we have now then before the big: "You Have Melanoma" scare…besides my glands acting up, "mentaly" im wishy washy, i have good days & dark days but thank God i have my woodworking to fall back on, it helps. Im thinkin of going back to work "part time" though, i owe my employer big time even though its never been pushed, they sprung for my Kaiser Ins long after i left work so, its weighing on my brain to do so, even if we can just call it "volunteering" for awhile, a day or two a week to pay them back, i hope they say yes!…Im glad youve been doing good though, youll know the right time to possibly stop treatment, you can always go back on right? no biggy!!….Take care sis, Mike….

Hi Jenn,

I'm not in your shoes either (my husband is the one with melanoma), but I can imagine how difficult a decision that would be.  I would probably be a wreck.  From your profile, I see that you are biochemist and involved in analytical work, IT etc.  So you probably are fairly data driven.  I work in biostatistics department on clinical trials gathering the data and working with the statisticians who do the analyses and my whole work life is about this stuff.  However, it all seems to fly out the window when the rubber hits the road so to speak and it actually involves us personally.  I can imagine it's comforting to get the treatments since it feels like at least something is being proactive, whether it means anything more or not (not sure of the research in this area or if they have enough long term data, etc).  but either way, you'll do the right thing.  Just wanted to say good luck with your decision.  I'm in awe of your ability to present this stuff so clearly, be a mother to kids, work, and all the treatment you went through and the subsequent limitations.  You are pretty amazing.  We will for sure hang in there with you, many hugs.  

Hi Jennifer – totally understand your perspective about adjusting to the new future.  The "new normal" is not how we expected to spend our lives.  My husband is not longer able to work, drive, do much physical activity, etc. and I don't expect that to change much, even though his most recent scans were clear of disease.  He's still on immunotherapy for the next year or so and we anticipate the fatigue and other aches and pains will continue for the foreseeable  future. I think my husband has adjusted to the new status quo more than I have – I try not to be bitter but it is easy to think of the "if only" scenarios. It's super frustrating but not productive.  It has been tremendously joyful to watch my husband play with our new grandson!  And we're looking forward to our son's wedding next May with a greater sense of certainty that he will be here to enjoy the celebration!  The uncertainty that comes with each set of scans will lurk for quite some time….maybe always – but we keep on keeping on!  Like you said – living is hard but it beats the alternative!  One foot in front of the other!  Take care and know that we share your thoughts.

Ann

Amen and well said, Jennifer!!  Sorry for the difficulties, but so glad for your current response.  I don't like to think that melanoma changed who I am.  But, as a friend told me long ago….you don't go through a life threatening disease, followed by a life threatening treatment and come out unchanged!  She's a smart cookie.  Or as I believe Heraclitus is quoted as having said…."Nothing is permanent but change."  

You are an inspiration to every so many!!  Live large! – yours, celeste