Late yesterday afternoon the weakness and lethargy started to build and today at chemo at UT Southwestern it was no different. I found out why. It's because the chemoembolization starts to "peak" on days 6-8 and that's where I am. It has caused me to become very anemic. My RBC is at 2.84 (should be closer to min. 4.27) and my hemoglobin is at 7.7 (should be closer to min. 13.2). I will be getting 2 units of blood tomorrow morning and the Oxaliplatin part of my new chemo regime (Gemzar and Oxaliplatin).
Otherwise, I am doing fine and am scheduled to be back at the NIH on Thurs/Fri July 23/24.More in a day or so once I'm more up to speed.
Things are going very well here and the chemoembolization procedure, to "zap the mets" in my right lobe, went off without a hitch. Dr. Levy performed the procedure (he's an Interventional Radiologist) and he and his team do great work. Not to mention that he has a very effective bedside manner and keeps you involved in every aspect of what's going on. I was awake, but sedated, so being the knowledge junkie that I am, and making sure that I am aware of every aspect of my care, I greatly appreciated that.
Dr. Avital has an amazing team here at the NIH and I am very impressed with the whole operation (sorry... couldn't resist that!). We are going to get more agressive with future treatments than originally planned and I will update those details this weekend. Still on schedule to return home tomorrow.
For all you down here, have a great one! We will be relaxing and doing a few yard things early, due to the oppressive heat forecast for the next 3 days. I am totally pumped for my trip to the NIH on Sunday, for my Tuesday chemoembolization. I'll post back after that.
In closing, since when do squirrels eat green tomatoes? Bloody thief!
"But I, I could never follow... No I, I could never follow..." and that's why the NIH clinical study is so important to my sweetie and me.So, where is this post going, you may be asking? This way... the long way around...
My sweetie and I both love the Dixie Chicks. I have loved them since they were the original sister trio and I saw them play live, then after a 5k run, at Annette Strauss Square near Pearl and Woodall Rogers service road - awesome! My sweetie got turned on to their music from me. Then, to see them win all those Grammys for that last album after the whole silly "rightwing-talk/country radio/burn the CDs/death threats fiasco" the next year was outstanding, to say the least.
They have a song on that album - it's called The Long Way Around -- that deeply touched my heart and soul. The words are a metaphor for my life. My family lived in Calgary, Edmonton and Kansas City as we all grew up. I went to 4 different high schools in 3 different cities in 2 different countries. Try that on for size when trying to connect! But I made it! So, I went to 2 different universities in 2 different cities -- so there!!
I have been exceedingly fortunate to have had the craving for knowledge and the wanderlust for travel, which is the best education tool of all. I spent 3 months in Europe, backpass and Eurail pass, by myself at age 26. East Berlin and East Germany then. Dogs on the train and the whole East Germany security gig. I spent a 3 weeks in New Zealand hitch hiking both islands with my brother John, and another 10 days in Australia and then Fiji. I've seen Canada up to Montreal. I've seen the entire western US, plus most of the Midwest and South... east to Florida. New Orleans is my new second home and I have lost count of the days and weeks spent feasting with friends and family there! I've seen some of Mexico, and most of Central America on dive trips. Jamaica. Hawaii. The Turks and Caicos. Yap, Palau and the islands of Micronesia. Guam. And the grandest of all -- 4 weeks safariing in Kenya during the great migration, then 5 days on the island of Lamu, with 5 mosques, 1 government vehicle (i.e no cars at all), grey water open mini-canals, ornate Moorish doors hundreds of years old and the friendliest 10,000 people on earth! More here.
Suffice to say that it all has had a huge impact on my life, how I deal with things, and how I look for the best way, not the easy way. It's also why my sweetie and I have such a simpatico relationship, as she is, in many ways, reflected in this song, too.
Now, this is a passage from the song (with 2 years changed to 1), and we are living it, and away we go with this next clinical trial at NIH. I hope you enjoy the amazing vocals, the prescient words, as we keep on trucking together. And I think that this shall be a song at my funeral about 40 years from now!
"It's been one long year now... Since the top of the world came crashing down... And I'm getting' it back on the road now... But I'm taking the long way... Taking the long way around."
(Now, crank the volume!)
The Long Way Around
My friends from high school Married their high school boyfriends Moved into houses in the same ZIP codes Where their parents live
But I, I could never follow No I, I could never follow
I hit the highway in a pink RV with stars on the ceiling Lived like a gypsy Six strong hands on the steering wheel
I've been a long time gone now Maybe someday, someday I'm gonna settle down But I've always found my way somehow
By taking the long way Taking the long way around Taking the long way Taking the long way around
I met the queen of whatever Drank with the Irish and smoked with the hippies Moved with the shakers Wouldn't kiss all the asses that they told me to
No I, I could never follow No I, I could never follow
It's been two long years now Since the top of the world came crashing down And I'm getting' it back on the road now
But I'm taking the long way Taking the long way around I'm taking the long way Taking the long way around The long The long way around
Well, I fought with a stranger and I met myself I opened my mouth and I heard myself It can get pretty lonely when you show yourself Guess I could have made it easier on myself
But I, I could never follow No I, I could never follow
Well, I never seem to do it like anybody else Maybe someday, someday I'm gonna settle down If you ever want to find me I can still be found
Taking the long way Taking the long way around Taking the long way Taking the long way around
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/)
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!
Yes... what you have all been waiting for! It's the Pulitzer Prize winning, 1975 print of Paul Horgan's "Lamy of Santa Fe," which ol' Puss-breath liked so well he slept on it. The book is all about Bishop Lamy's life in Santa Fe and area between 1853-1875. Lamy (La-MEE) was the area's first Bishop and the chapel he had is now part of the compound at Bishop's Lodge Resort. The chapel, which has no seats and is very tiny, also happens to be the place my sweetie and I got married in October 2004.
The book holds a special part in our hearts, as well as Puss's fat head!His " big headedness" has purred and the answer is 4 paws!
As far as chemo goes, I completed Round 9, Session 2 this past Tuesday. For the 2nd week in a row I felt really nauseous about 2 hours after and it continued well into the late night. The pills I had did not help much, either. Only some mac 'n' cheese (Janine's gourmet homemade) helped. Which is very weird because one is told to stay away from dairy when nauseous. I have been extremely fortunate because this is the only two episodes I have felt that way in a year of chemo! Think I will take the pills the morning before I go to the next round and hope that nips this crap in the bud. Other than that, all plans are a "go" for me to head up to the clinical trial consult in Bethesda, end of next week. All appendages are crossed for good luck!
A semi-daily dose of miscellaneous treats that started out detailing the construction of Janine's and my new ICF home. It's now a series of disparate ramblings as they occur.
About Me
Name: Bill Kennedy
Location: Dallas, Texas, South Georgia And The South Sandwich Islands
