Today was not my best news day. There's a silver lining to the bad news but overall, I really hate this tumor. REALLY REALLY hate that this is still going on. The tumor is shrinking in two places which is good. The shoulder and elbow are getting sizable smaller. That is the best news and if it had been the only news I would be celebrating. If the shoulder tumor part grows into my chest cavity, it become a threat to my life. So it shrinking means that I'm safe from those fears for awhile.
The bad news, "ground zero" where the tumor started is growing. I have the skinniest arms and I don't see how there is anywhere for the tumor to grow. Seriously, look at this picture of my left arm. Anyway, it doubled in size in my bicep. There's also a very small part under my arm that is looking "brighter". The second spot isn't anything we are really talking about yet.
If the tumor is growing, it's time to stop the current drugs and to change course. That means we have to pick a new plan. Chemo, surgery, radiation, etc. We don't know. There aren't that many options out there for me that I haven't tried.
So sorry to hear about this!! It has been such a long, long journey for you. Just know we're thinking about you here in Delaware!
ReplyDeleteKeep your head up--you will win this, things will get better for you. Take things one day at a time. Find joy in the small things. Take a deep breath and let go--let go of all the things you can not control, instead focus on the things you can do to make you happy right now. Sometimes when the future looks glum all you can do is focus on the moment right now. I hope I have helped some and I am so sorry this continues for you, but there is light at the end of the tunnel, there really is....a desmoid tumor survivor in Indiana
ReplyDeleteHi there. I live in Washington state and I have a 20 month old baby that was born with a desmoid tumor in his left arm. I noticed something was not normal in his arm at two weeks of birth. He didn't start being in pain until he was 16 months. He has seen several doctors but finally had a biopsy done three weeks ago and that's when we got the precise diognostic. I can say that I understand your frustration. As a mom, it hurts me deep, deep inside my soul to have to see him live with the pain every day. I would prefer to be the one in pain, than to see him suffer like that. He has another MRI this week and starts chemotherapy. I am hoping for the best and looking forward to the day that he can even get a full nights sleep.
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