OK, went to MGH yesterday to start Round 4 of the clinical trial, but more importantly to get the results of the CT scan that I had last week. Kara, the RNP came right out into the waiting room to get me (it's always been the tech to the the vitals first), and Kara said that she'd been anxiously waiting for my arrival---that it was really good news. We sat at her computer in the exam room and she brought up the result, which showed that out of the 6 nodes that they are watching and measuring, one in my neck had totally disappeared, the other one got significantly smaller. The 4 in my abdomen also all shrunk significantly, some more than others, but the report says that all lesions are decreasing in size, with no new lesions. I think Kara was even more excited than I...she was so delighted to be giving me good news. She read an email to me that she received from Dr. Michaelson, who was at a conference (learning more about how to combat this disease, hopefully!), and he said to tell me that this is very good news and that I'm off to a great start. That felt great to hear that from the "big guy", as they call him in there, (tallish, but very thin), but huge in knowledge, treatment and compassion.
Kara gave me copies of a summary of everything that has gone on to take to my new PCP today, a copy of the measurements of the nodes from last time to this time, and a copy of my bloodwork...I am bordering on being anemic--if it goes much lower, I'll have to be treated. She couldn't believe I'd climbed Snake Mountain on Sunday with Keith, Kristeen and Maia..... Anyway, I was reading the summary while she went out for my new meds, and at the end of the summary it said, "She understands that this (biopsy of lymph nodes) represents incurable metastatic disease, which is likely to progress to life threatening complications. The sarcomatoid histology is suggestive of a potentially aggressive disease course."
Well, there is the big slam again....I have metastatic renal cell carcinoma, lest I forget. While I am thrilled that the nodes/lesions are getting smaller---I have to continue on the course of staying battle ready and I need to up the training. Now is no time to be a slacker. This disease is not for sissies, and I don't plan on being one....
Ok, enough for now--I'm off to see my new PCP.
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4 comments:
Beverly
Please know that Scott and I have been following you on your journey. Your blog has been an inspiration. We send you our love support and prayers.
Maureen
I just caught up with your past month of blogging. The ending statement of your report is typical in that the docs and nurses who live and breathe with your progress (if they are any good)are afraid to get too optimistic, even when the news is fantastic. But I rejoice in the wonders that God and the meds are doing! Praying for the best! Ilene
Well. . . . A healthy awareness of what you're up against is, I guess, healthy. However, I don't know how many people on plant-based, non-processed REAL FOOD diets they have in their studies. Then there is your real, life-sized attitude! So, I actually don't think we ought pay overly much heed to prognostications on how likely it is "this thing" will lead inevitably to life threatening complications. Life, on its own, will surely lead to those--for all of us. In their time. Keep up the great course of action you've chosen. We are with you.
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