So this is a tough one, but when I started this blog I promised myself I’d write about the good, the bad and the ugly. So here it is…
today has blood draw, oncology and infusion. I knew when Dr P walked in he was nervous. So I braced myself… he started by saying he has done more research and he isn’t sure that adding the Ami is the best next step for me. He went onto say that we are now looking at quality cs quantity of life. We know that I didn’t react well to the Ami and although the chances of it happening again are low we know that the Tagrisso has started to work. The Ami is only 30% effective. Is that 30% worth the side effects that we don’t know. I agreed that I struggled to get back to my new normal after my last treatment but I have always said I wanted to fight this as aggressively as possible. He assured me that we could revisit Ami at any point in. But my options are running low. I asked about a med that Dr R had told me about hopefully going in front of the fda in October. He agreed that it was coming but he didn’t want to get my hopes up about a miracle drug. The next part of the conversation was harder than the first part. We talked about end of life. He doesn’t want me to be scared we will work with hospice to make sure that I am comfortable as possible and my wishes are met. Essentially I will be given pain meds to rest comfortably. I have talked to Bryan I have created a living will and I have talked openly about my wishes. I told Dr p that I wanted to continue fighting for my boys. I am not giving up but I agree we should hold the Ami as long as tagrisso is promising. Although I will have scans we will really go based on symptoms. I want to make it clear I am not halting treatment. I am continuing with the carbo/peri regimen and continuing with my tagrisso. I have one more double infusion then I drop the harder one (which will hopefully help my side effects.).
Bryan and I had tough conversations tonight. We are holding off on telling the boys. please don’t treat me differently when you see me especially in front of the boys. They are struggling enough with the changes they are seeing (weight loss, wheelchair, me masking up, etc).
I have also had numerous people ask recently what they can do. My friend Jordan created a meal train. My hardest days are the Friday after chemo for about a week. Please do not feel like you need to help we meal prepped a little and worked out a plan. But if you do want to help it is greatly appreciated. I’ll post the link at the bottom. Keep my family in your thoughts. dont treat me any differently. (This one could be in my head) you Can only imagine how I feel when this happens. I have people who I thought were friends who i havent heard from (I know phones work both ways) and people who have said some really hurtful things. At the same time i have people reach out who i didnt think cared and showed me that they really do. I cant tell you how much i appreciate the kind words.
Most importantly i ask that you share my story. If my story can help one person question a symptom or a scan and have an early diagnosis for anythjng that I have done my job. If my story can raise awareness that you all you need is lungs to get lung cancer I have done what I set out to do. This disease is nothing to joke about. It has taken more young lives than I care to admit this year alone. And we arent even half way through the year. It has devastated husbands, wives and kids. It has taken far too many hopes and dreams from moms, dads, brothers, sisters, daughters, sons and friends. It has taken far too much from me and my family and my fight isn’t over. Young lung cancer inititive (ylci.org) is a great organization that helps young (diagnosed under 50) with expenses. Last year alone they helped my Family on numerous occasions. Please check out their website-if you are so inclined a donation is always appreciated. They also have some pretty nice gear you can represent.
im realizing I dont know how to post links in my blog. So I’ll post the meal train and you g lung cancer initiative in my comments section.
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