I had a 2nd biopsy of my very big and growing lung tumour a few weeks ago. After sending the sample for investigation, the researchers have found that I have a rare positive RET fusion mutation on my lung tumor.
There is
currently a clinical trial drug available only at Dana Barber in Boston,
MA. It is not available in Canada. I have sent a request for
consultation and access to the drug directly to the Research doctor this
evening. I am not certain how much the drug will cost or if they will
even see me. My cancer is very aggressive and I had already gone through
5 straight days of radiotherapy for my lung and my brain this past
week.
I feel like I'm just going through the motion of working towards getting onto this trial. In truth, there are so many cancer clinical trials each month all over North America. How many can a patient chase down? The time, the cost, the chaos in life that follows a clinical trial, etc. I'm working on this getting onto this trial because it was recommended by my prime Oncologist. Otherwise, I don't think I'll go for any trials unless it's within 2 hour drive from my town.
If this will be the last comfortable (physically and mentally little pain) summer I have with my immediate family and beloved friends, let it be a good one. I want to enjoy it. No one is ever ready for death. It often comes too soon. I have had an amazing and fun life comparing to most. I had a look at my Blogger Blog and saw all the fun projects I had done! I can't do much about my health now. I just leave it to the Lord and pray that he will take care of my health, my husband, and my children. All my worrying will do nothing. He has always given more a lot more than I have prayed for, even contrary to what Western Medicine said I could achieve (fertility treatment).
I am comfortable enough right now. All 5 consecutive days of Lung Radiation seemed to have opened up my airway a little. I'm working out my 1 good lung to reduce my dependence on supplemental oxygen. I am now able to not use supplemental oxygen indoors. I'm going to try to use my own lung in the garden too. I hope I will be able to rid of the extra oxygen then I will be able go out easily - lunch with friends, movies with the kids, etc. Little wins each day goes a long way! Working to not be a prisoner indoors is a good thing! I'm not going to worry about getting on the LOXO 292 trial, or reading up about it every minute of every day. If the Research institute calls upon us, I will do the necessary to go on the trial. If not, it's the Lord's will and I will just enjoy hopefully a few more months in my town.
Oh my. I have no idea what to say to you. I guess I can tell you that you and your family are in my prayers, and that whatever happens, I hope that you deal with it with as much grace as you can. I am so very sorry that this is happening to you. XOXOXOX
ReplyDeleteThanks ElleC! Your thoughts and prayers mean a lot to me via blogsphere. Having a peace of mind, not having to worry about cancer all day long is such a relief and comfort.
DeleteHope you get to have lunch with friends and go to movies with the kids. Hugs from the UK.
ReplyDeleteThanks Ruthie! I went out for lunch with one of my dear friends yesterday and I felt great!
DeleteYou are so wise, Nicky. Not many people are able to stand back and look at the whole picture. Worrying can ruin the only time we have - no matter if that's short or long. And none of us knows from day to day what is around the next corner. I'm glad you are able to breathe a little better and hope you can get out for your lunches and movies. My heart is breaking for you and your family but you are a shining example of grace and thanksgiving. Bless you, my friend.
ReplyDeleteThanks Jenny! I'm not sure if I'm wise. It's the one way I can cope with all this. I guess I wasn't born to be a worrier. I want to reconciled with things and move on.
DeleteI'm hopeful that youll be out to lunch with your friends and doing fun things with your family. I hold good thoughts for your medical treatment.
ReplyDeleteThanks Eileen! Your good thoughts are most welcomed! I am determined to do fun things with the people I love with the time I've got!
DeleteI think this is the right approach. It will work for your family as well, who of course are going through this with you. Worrying will not cure anything and only makes you miserable. Your plan is a good one and the essence of a palliative approach - life must be about living, about a spiritual way of dealing with this. I do hope you enjoy this season (and hopefully it is a long one - I was speaking metaphorically) with your family and friends.
ReplyDeleteThanks Sarah Liz! So far I have been taking every opportunity to enjoy life with people and things that I love. I'm not pushing myself too much. If I'm tired I rest. So far it's been working well.
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