My Trip To NIH/NCI
This is somewhat long, so sit back and relax! I got back at 9:00 PM last night from Bethesda, where I had my consult w. Dr. Avital (plus blood tests, EKG and chest x-ray). He is every bit as wonderful as my oncologist here! The security to get in is strict... baggage x-rayed and walk through a mag unit, then get an ID badge. It's the largest health care research facility of its kind in the world and is a very impressive, very beautiful tree-filled, rolling campus, a mere 10 minute walk from downtown Bethesda.
After a morning filled with tests and breaks in between, I went to the clinic area to wait to be called. After about 25 minutes I was in a consult room. First I met with the Oncology Social Worker there who handles anything and everything non-medical related. He was very nice and we had a great chat. Janine will like him very much. Then, after a wait that was made longer while Dr. Avital and a member of his surgical team reviewed my CT scan from this past Tuesday, they came in.
This is what we are dealing with and I am showing this CT slice, with my colored additions, because it would take multiple slices to show it all. The big, red circle is my somewhat swollen (now), necrotic (all the gray areas) PC tail tumor. The rest of the pancreas is the lazy upward-left sloping finger. To the right of it is a new tumor on the spleen. My liver is in the left side of the picture (CT scans are flipped -- your liver is on the lower right, the pancreas on the upper left.) The left lobe is the lower part and has the 4 main tumors in blue (they are there, just not in this slice). Two have grown slightly and on another slide, there is a new one. But, 3 have shrunk drastically or are gone! The yellow circles are new, small tumors in the right lobe (again, they are there, just not in this slice). Those new, right lobe tumors are what have caused an "back off the gas" speed bump in the road. That's because the original plan, which I was told I was an ideal patient for before this latest scan, was to go in, resect the left lobe of the liver (i.e. remove it), resect the tail tumor and the spleen (metastatic or not, so the new tumor there is no big deal to them), and then sew me and and start chemo again. Hopefully leaving me in NED status (no evidence of disease).
That can't be done now, because you can't remove both lobes of the liver. So, chemoembolization of those yellow tumors is the Y in the road we are heading down.
Here's what it is: "Chemoembolization delivers a high dose of cancer-killing drug (chemotherapy) directly to the organ while depriving the tumor of its blood supply by blocking, or embolizing, the arteries feeding the tumor. Using imaging for guidance, the interventional radiologist threads a tiny catheter up the femoral artery in the groin into the blood vessels supplying the liver tumor. The embolic agents keep the chemotherapy drug in the tumor by blocking the flow to other areas of the body. This allows for a higher dose of chemotherapy drug to be used, because less of the drug is able to circulate to the healthy cells in the body. Chemoembolization usually involves a hospital stay of two to four days. Patients typically have lower than normal energy levels for about a month afterward."
(http://www.sirweb.org/patients/liver-cancer/)
Here's 3 pictures showing what happens. Pic-1, pic-2, pic-3.
There is a 95% possibility that I qualify for this at the NIH, but my chart must be reviewed by the interventional radiologist who will do the procedure and he won't be back in their clinic until Monday. Dr. Avital said that he is really fighting for me on this so I expect to be accepted. If so, then I will be there week after next for 3 nights. After that, provided I show at least 30% reduction in size of those "yellow-bellied varmints who shot my Pa" then I will be scheduled for the original surgery.
That, in as succinct and non-techie a way as I can put it, is where my sweetie and I head next on this crazy journey. I can tell you this... the CT results of earlier this week were both good and bad news and we didn't know what to expect as a result. Dr. Avital had a plan B ready to talk to me about the moment he walked in the door, we got along great, and I am highly impressed with the way my whole day went.
Finally, we are in a far, far better spot psychologically, spiritually and emotionally this year than where we were last year, because Janine and I have shared and been through so much together. We could not have done such without the good wishes, prayers and support of family, friends, complete strangers whom have since become good friends, and complete strangers who have left kind comments on this blog.
So whatever you do in your own personal time to give thanks, please give another small one for us, too, and keep coming back here. I ain't going nowhere but forward for another year because I have too damn many things to do to have cancer!
Monday afternoon update: I have been accepted for the chemoembolization and trial and they are working on a schedule for the week of July 6th! YIPPIE~!!!
Petunia will thank you, too... if she ever wakes up!
Labels: chemo news, good news, life as we now know it, NIH/NCI
posted by BK @ 1:29 PM
11 Comments:
Strawberry fields forever, my man!
The Buddha told a story:
There was a man walking across an open field, when suddenly a tiger appeared and began to give chase.
The man began to run, but the tiger was closing in. As he approached a cliff at the edge of the field, the man grabbed a vine and jumped over the cliff. Holding on as tight as he could, he looked up and saw the angry tiger prowling out of range ten feet above him. He looked down. In the gully below, there were two tigers also angry and prowling. He had to wait it out.
He looked up again and saw that two mice, one white, the other black, had come out of the bushes and had begun gnawing on the vine, his lifeline. As they chewed the vine thinner and thinner, he knew that it could break at any time.
Then, he saw a single strawberry growing just an arms length away. Holding the vine with one hand, he reached out, picked the strawberry, and put it in his mouth. It was delicious.
Very nice! I've been eating a lot of blueberries and I haven't fallen yet... ;-)
Blueberries, strawberries, raspberries ... your choice. Hell, the Buddha might frown a bit, but it could even be a king salmon!
these scans are really something else. the information and the detail
i just read about steve jobs having had a liver transplant. he sure did keep that under the radar
you sure are graceful during all of this
glad there seems to always be something kind of promising around the corner!
I am VERY disppaointed in Steve Jobs. I realize that everyone has their right to personal privacy, but his famous position has put him in a place where he could be a huge advocate for pancreatic cancer awareness and advocacy. Instead, he stays silent the entire 4+ years of his illness and now this.
The only reason I can think of that one would get a liver transplant after PC, and after he showed that large weight loss last Winter, is because metastasis reappeared in his liver -- big time. The fact he had the money and connections to get to the top of a transplant list (in Tennessee) is not lost on me. I wish him well. But, he could do the world a lot more favors in this area than he has demonstrated so far. Now that you've been given this new lease on life, Steve, please start selling PC research instead of iPhones, Steve!
What I am about to go through is experimental and is never done in a typical hospital, TG, esp. the surgery part. It's simply not done, period. I am very fortunate to have been presented with this new door to walk through and I have every reason it will work. It's just that we have to take one step back (chemoemobolization) before we can take two steps forward with the surgery to get me to NED.
Infinite Blessings to you, my friend. XO - Lynn from New Orleans!
Congratulations on approval for the chemoembolization! One month with a lower energy level may make it possible for the rest of us to keep up with you.
Dear Anon... ahhhh, but I will have 5 days at the NIH with WiFi and a laptop.
Are you well rested, with lots of coffee?
;-)
First of all, your inner strength and sunny sense of humor is source of inspiration. We extend our best wishes for a complete and speedy recovery!
My dad was just diagnosed with Pancreatic Cancer that metastasized to the liver(adenocarcinoma) and we are consulting with Dr.Avital to determine the best course of action to help my dad.Has chemoembollization worked in the past? Please respond to mdandfhp@gmail.com. Looking forward to hearing from you!
Thanks, faigel, for the very nice comments. Onward and upward!!!
I've replied to your email.
At any rate, I liked some of the NIH cartoons on VADLO search engine!
Post a Comment
<< Home