Feeling desperate

Dear Dympsd,

You raise difficult questions (and have read your earlier posts and how unlucky you have been) and I dont know too much what to say but I agree with cjm22.

I think all of us here have felt unlucky that we got here, and that something must have gone wrong or the doctors did not act properly. But I think in most cases we have just been unlucky. That sometimes it is hard to find in advance, you just have to be vigilant and lucky in catching (see bubbles / celeste finding her new different cancer but from an MRI for melanoma – without the melanoma MRI she would never have detected this).

In terms of treatment, my understanding is that you have been using radiation to remove the brain mets so that is good. If your husband is BRAF positive then the BRAF-MEK combo he is taking could work wonders and reduce the tumour burden markedly, as in cjm22's case, and then this makes it easier for the immunotherapy. So I think you have a decent plan and you are being treated at Stanford which should be good (although there are other good places in SF). So I think you are on top of this.

In terms of coping, in my case it was realy hard at first, thinking i was going to die in a year or two's time (this may have been exaggerated but its how I felt). So I tried to deal with this. Going to church helped and reading celeste's blogs and her philosophy helped too. Not taking life for granted and seeing beauty in many things, being grateful for being alive. (Now that I think I might be getting better I fear i may be losing this but I hope never to forget this. I lost the use of my toes for a month or so, now the sensation is back and its amazing!). If things stabilize then it may become much easier to deal with. You will still be worried but will find it easier to cope.

on the deep questions you raise, i guess you could read the experiences of other patients here. I am in relatively OK shape so I handle my illness alone, just telling my family the basics. my wife supports me in the background but i dont take her to doctor appointments except for second opinions. other people handle it in different ways. celeste's husband seems incredibly helpful and knowledgeable. so you have to work out the best approach given how your family operates, supporting your husband but trying not to let your worry show as this may stress him out or make him more anxious. i never took counselling but that could be an option, and i would have seriously considered it, particularly if church or other approaches had not helped.

i dont think there are any easy answers but people on this bulletin board are here for you and rooting for you and your husband. and will try their best to answer your and his questions.

best wishes and I hope your husband will be feeling better soon

Mark

You're allowed to have bad days! Being a caregiver is ROUGH. Rollercoaster ride from hell. I remember also feeling very confused and distraught at what I was seeing with my own eyes (husband disappearing before my eyes) and what doctors were saying (or rather, not saying — for a few weeks, no doctors had mentioned palliative care or prognosis, even as my husband was adimtted to the hospital 3 times in 2 weeks and unable to breathe or walk). It must be hard for you to stay positive all the time. I found relief in finding some people I could talk to (NOT my husband) where I could really express my true fears about his possible death, paralysis, impact on my career and our finances, etc. Obviously I couldn't talk to my husband about some of that stuff (although he has surprised me in what he's able and willing to talk about — it was a big relief when we finally talked about advance care planning and what a good death means to him). I really needed to talk to people where they could accept my honesty. I hope you can find some similar people.

It takes time to adapt to the new normal. Ann gives great advice below, too. Hope your husband's symptoms come under control soon.

Hi – Keep the faith….the journey may take some time with ups and downs.  My husband has been battling almost 7 years and just recently had his first clean scan.  He, too, had brain mets and other tumors throughout his body that stubbornly hung around.  He's gone through multiple brain surgeries and gamma knife treatments, is currently on keytruda and dabrafenib.  He's endured multiple medical calamities/hospitilizations/recoveries and is still here.  I've taken time off when he's been in the hospital or needed more attention at home but have worked full time for the most part.  II will say that it's taken years to accept what is our "new normal".  I've always said that he just needs to hang on until researchers come up with the next new treatment!  I hope your husband responds well to the new mix.  Take care!

Ann