Saturday, July 20, 2013
The heat is down, and Whac-A-Mole is on hold.
I have a confession to make: I really don't like the summer. I blame the desert. Growing up in Arizona, one grows to dread the seven months of summer, April - October. Now that I've fled to New Jersey, I get cranky when a seven day heat wave blankets half of the country, leaving us all collectively miserable. Nonetheless, my spirits are high, not only because I'm listening to thunder usher in cooler temperatures.
The roller coaster of Cancer World took an unexpected turn last week. As I headed out of town last Tuesday, in 100+ degree heat with 70+% humidity, I headed to the Baltimore airport to pick up Mary, who was flying in from Pittsburgh to be with me for one of an estimated three RFA procedures this summer. I wasn't sure exactly which tumor Dr. Hong would go after, or even which lung would be invaded. It didn't really matter because I knew that I had several tumors to Whac in this never ending game of Whac-A-Mole.
We arrived at Johns Hopkins Hospital on Wednesday at 7 a.m. By 9:15 I was finally rolled into the OR and prepped for surgery. Dr. Hong, ordered a CT to see just how things were looking and I waited to find out the plan. He appeared out of nowhere and said, "I don't see anything to treat!" Wondering if I was in an anesthetic stupor, I just stared. "How is that possible?" Dr. Hong said that several of the "hot" spots on the PET scan, only six weeks ago, have become smaller and some have disappeared. He said that there are still two spots in my right lung that he's watching, but the other spots were probably either scarring or inflammation from prior ablations or radiation treatments. He literally said the words, "Things look great!" This, of course, doesn't mean "disease free," but I'll take it. "Does this mean I can eat breakfast and go back to bed?" We agreed that I should return in September for another set of scans. I practically ran out of there and Mary and I celebrated over waffles.
We drove back to Karen's house, always Command Central for my Hopkins visits, packed up our bags, I dropped Mary at BWI where she took an early flight back to Pittsburgh, and I drove back home. Whether it was the heat or relief/gratitude/shock, I've been sleeping 10-13 hours a night since I got back.
What about that tumor on my rib I mentioned in my last post? A few weeks ago Dr. Hales called me and said that he decided I should only have one big radiation treatment to the rib instead of 4-5 smaller ones. This would be less risky if I need to have more radiation in the future. He had a last minute opening the next day, so on June 28th I did a same day round trip to Baltimore and got a blasting dose of radiation to kill the rib tumor. Thankfully, there were no side effects.
With a reprieve, however long it lasts, from the game of Whac-A-Mole, along with cooler temperatures, I guess I'm going to have to rethink my feelings about summer. Also, my friend Jim is doing great after his stem cell transplant. At the tender age of 70, he will soon reach his 100 day milestone and in Transplant World, that's a big deal. He started Maplewoodstock 10 years ago, a two day music bash in Maplewood in the spirit of Woodstock. Jim is an unstoppable bass player and I was so happy to see him at this year's celebration. Plus, another friend who had a PET scan the same day as my non-ablation, received a clean bill of health -- another huge relief. For those of us who live from PET scan to PET scan, or blood test to blood test, having a break in the action is everything. It's like a cool rain after a heat wave.
Kathy
CANcer + HEALth = CAN HEAL
The roller coaster of Cancer World took an unexpected turn last week. As I headed out of town last Tuesday, in 100+ degree heat with 70+% humidity, I headed to the Baltimore airport to pick up Mary, who was flying in from Pittsburgh to be with me for one of an estimated three RFA procedures this summer. I wasn't sure exactly which tumor Dr. Hong would go after, or even which lung would be invaded. It didn't really matter because I knew that I had several tumors to Whac in this never ending game of Whac-A-Mole.
We arrived at Johns Hopkins Hospital on Wednesday at 7 a.m. By 9:15 I was finally rolled into the OR and prepped for surgery. Dr. Hong, ordered a CT to see just how things were looking and I waited to find out the plan. He appeared out of nowhere and said, "I don't see anything to treat!" Wondering if I was in an anesthetic stupor, I just stared. "How is that possible?" Dr. Hong said that several of the "hot" spots on the PET scan, only six weeks ago, have become smaller and some have disappeared. He said that there are still two spots in my right lung that he's watching, but the other spots were probably either scarring or inflammation from prior ablations or radiation treatments. He literally said the words, "Things look great!" This, of course, doesn't mean "disease free," but I'll take it. "Does this mean I can eat breakfast and go back to bed?" We agreed that I should return in September for another set of scans. I practically ran out of there and Mary and I celebrated over waffles.
We drove back to Karen's house, always Command Central for my Hopkins visits, packed up our bags, I dropped Mary at BWI where she took an early flight back to Pittsburgh, and I drove back home. Whether it was the heat or relief/gratitude/shock, I've been sleeping 10-13 hours a night since I got back.
What about that tumor on my rib I mentioned in my last post? A few weeks ago Dr. Hales called me and said that he decided I should only have one big radiation treatment to the rib instead of 4-5 smaller ones. This would be less risky if I need to have more radiation in the future. He had a last minute opening the next day, so on June 28th I did a same day round trip to Baltimore and got a blasting dose of radiation to kill the rib tumor. Thankfully, there were no side effects.
With a reprieve, however long it lasts, from the game of Whac-A-Mole, along with cooler temperatures, I guess I'm going to have to rethink my feelings about summer. Also, my friend Jim is doing great after his stem cell transplant. At the tender age of 70, he will soon reach his 100 day milestone and in Transplant World, that's a big deal. He started Maplewoodstock 10 years ago, a two day music bash in Maplewood in the spirit of Woodstock. Jim is an unstoppable bass player and I was so happy to see him at this year's celebration. Plus, another friend who had a PET scan the same day as my non-ablation, received a clean bill of health -- another huge relief. For those of us who live from PET scan to PET scan, or blood test to blood test, having a break in the action is everything. It's like a cool rain after a heat wave.
Kathy
CANcer + HEALth = CAN HEAL
Sunday, June 23, 2013
Whac-A-Mole
You've played the game before. The one at all the county fairs where you whack the gopher-like mole that pops up randomly with a big rubber mallet. As the game goes on, the mole pops up faster and faster and you have to keep whacking it down before it appears somewhere else. By definition Whac-A-Mole is a repetitious and futile game. "After a designated time limit, the game ends, regardless of the skill of the player." Such is the game I've been playing as I try to stay ahead of the tumors of the original cancer, Adenoid Cystic Carcinoma of the Breast (ACCB). [ACC is a glandular head and neck cancer, but sometimes, very rarely, it will appear in breast glands, as it did with me. ACC grows so slowly, chemotherapy doesn't work.]
I had a PET/CT in early June to answer a number of questions. The outcome was mixed: 1. Did the radiation I had last winter on the hilar tumor (the super dangerous spot) in my right lung work? Answer: From what we can tell, yes. Yeah! 2. Did the cryoablation I had last winter on the kidney tumor work? Answer: From what we can tell, yes. Yeah! 3. How fast are the five or six tumors in my lower right lung that have not yet been treated growing? Let me pause for a moment to admit that this is the first time I'm mentioning this. I didn't mention it in the Wrecking Ball post of February 25th because it just seemed too overwhelming. There's only so much bad news a person can take, and problems 1. and 2. were more urgent than problem 3. We didn't rush to treat these spots because they were relatively small, and we wanted to give me a chance to recover from this last year of treatments (surgery, radiation and ablations). So, what's the status of these spots? Answer: Gone! What? Yep, they apparently were either a slight infection or inflammation or both. That's the confusing thing about PET/CTs. They show anything that "lights up" from the nuclear injection, which can be cancer, infection or inflammation.
So far, so great! I couldn't believe that the planets were aligning. Well, some were and some weren't. PET/CTs don't pick up everything, especially if spots are small, and the last question was a big one. 4. Is there anything new? Answer: Yes. There are several tumors (at least six) in the lining of my lungs, called the pleura, that were too small to declare as cancer with the last set of scans in December, and some that are being seen for the first time.
Given the history of this game of Whac-A-Mole that I've been playing since the lung tumors first showed up in 2006, my doctors believe that there are more tumors in between those picked up on the scans. I'm forced to admit that this logic makes sense when I think about what happened with the lung surgery I had last August. My surgeon planned to remove two tumors that we could see on the scans. When he went in, he found eight more that we didn't know about. Instead of removing two tumors, he removed ten. And yes, I failed to mention that before now too. It just seemed, when I said it out loud, that people would think that I was one step away from hospice, and I knew I had a lot more Whac-A-Mole left to play.
However, the game is getting faster. Over the last month or so, I've been feeling pressure in one spot in my chest over my heart. The pressure turned to soreness and then increasing pain. It turns out that I have a tumor in my first rib. When the game itself moves, it's harder to keep up.
What's the plan? Well, I'll be using two mallets to keep whacking at the moles over the next couple of months. The rib tumor is best treated with radiation, while the pleural tumors in my lungs are best treated with radiofrequency ablation (RFA). After two trips to Johns Hopkins and several discussions with my doctors here and there, the plan is for me to start radiation to the rib on July 12th for 5-7 treatments (business days) and to have an ablation (a same day procedure) on one of the biggest lung tumors on July 17th. Once I get through that, we'll figure out the other ablations that we think need to be done now (not all of the six we know about are big enough yet to ablate). I'm hoping that Hope Lodge will have room for me again, where I can work remotely while getting these treatments. The side effects will be almost none. I'll be very tired a couple of weeks after the radiation, but the pain in my chest will be gone and my seat belt will no longer be uncomfortable. The RFA will only slow me down for a couple of days. I might get a temporary cough later, but it's a small price to pay for killing a lung tumor.
That's the short term plan: Keep playing Whac-A-Mole. The long term outcome may appear grim, but maybe not. A few years ago a Swedish study (we'll get to the Swedes later) found a gene fusion that was determined to cause ACC. It involves the MYB oncogene that was found to be altered in most ACC patients. Knowing what causes ACC allows researchers to try to target ways to "turn off" that gene so that tumors stop growing and new ones can't develop. The Adenoid Cystic Carcinoma Research Foundation describes several clinical trials that are testing new drugs to do just that. Since ACC doesn't respond to chemotherapy, these "targeted agents" are the best shot at controlling this cancer systemically, instead of wearing patients down with the never ending Whac-A-Mole game.
My long term plan is to stay ahead of the game long enough for something to come down the pipeline that turns off the MYB gene alteration. The clinical trials going on now are still too dangerous for someone like me (a transplant patient) and the side effects are very toxic. Thankfully, the doctors at Hopkins understand all this and are willing to keep treating me, one tumor at a time. Given that this is my third recurrence in a year and that my total tumor count is 25+ in my lungs, one in my kidney and now one in my bones, most doctors would give up on me. Most employers would too, for that matter. But my doctors and my firm are amazing and they have seen for themselves that I'm pretty lucky with Whac-A-Mole. It has nothing to do with skill. It's all timing.
Kathy
CANcer + HEALth = CAN HEAL
I had a PET/CT in early June to answer a number of questions. The outcome was mixed: 1. Did the radiation I had last winter on the hilar tumor (the super dangerous spot) in my right lung work? Answer: From what we can tell, yes. Yeah! 2. Did the cryoablation I had last winter on the kidney tumor work? Answer: From what we can tell, yes. Yeah! 3. How fast are the five or six tumors in my lower right lung that have not yet been treated growing? Let me pause for a moment to admit that this is the first time I'm mentioning this. I didn't mention it in the Wrecking Ball post of February 25th because it just seemed too overwhelming. There's only so much bad news a person can take, and problems 1. and 2. were more urgent than problem 3. We didn't rush to treat these spots because they were relatively small, and we wanted to give me a chance to recover from this last year of treatments (surgery, radiation and ablations). So, what's the status of these spots? Answer: Gone! What? Yep, they apparently were either a slight infection or inflammation or both. That's the confusing thing about PET/CTs. They show anything that "lights up" from the nuclear injection, which can be cancer, infection or inflammation.
So far, so great! I couldn't believe that the planets were aligning. Well, some were and some weren't. PET/CTs don't pick up everything, especially if spots are small, and the last question was a big one. 4. Is there anything new? Answer: Yes. There are several tumors (at least six) in the lining of my lungs, called the pleura, that were too small to declare as cancer with the last set of scans in December, and some that are being seen for the first time.
Given the history of this game of Whac-A-Mole that I've been playing since the lung tumors first showed up in 2006, my doctors believe that there are more tumors in between those picked up on the scans. I'm forced to admit that this logic makes sense when I think about what happened with the lung surgery I had last August. My surgeon planned to remove two tumors that we could see on the scans. When he went in, he found eight more that we didn't know about. Instead of removing two tumors, he removed ten. And yes, I failed to mention that before now too. It just seemed, when I said it out loud, that people would think that I was one step away from hospice, and I knew I had a lot more Whac-A-Mole left to play.
However, the game is getting faster. Over the last month or so, I've been feeling pressure in one spot in my chest over my heart. The pressure turned to soreness and then increasing pain. It turns out that I have a tumor in my first rib. When the game itself moves, it's harder to keep up.
What's the plan? Well, I'll be using two mallets to keep whacking at the moles over the next couple of months. The rib tumor is best treated with radiation, while the pleural tumors in my lungs are best treated with radiofrequency ablation (RFA). After two trips to Johns Hopkins and several discussions with my doctors here and there, the plan is for me to start radiation to the rib on July 12th for 5-7 treatments (business days) and to have an ablation (a same day procedure) on one of the biggest lung tumors on July 17th. Once I get through that, we'll figure out the other ablations that we think need to be done now (not all of the six we know about are big enough yet to ablate). I'm hoping that Hope Lodge will have room for me again, where I can work remotely while getting these treatments. The side effects will be almost none. I'll be very tired a couple of weeks after the radiation, but the pain in my chest will be gone and my seat belt will no longer be uncomfortable. The RFA will only slow me down for a couple of days. I might get a temporary cough later, but it's a small price to pay for killing a lung tumor.
That's the short term plan: Keep playing Whac-A-Mole. The long term outcome may appear grim, but maybe not. A few years ago a Swedish study (we'll get to the Swedes later) found a gene fusion that was determined to cause ACC. It involves the MYB oncogene that was found to be altered in most ACC patients. Knowing what causes ACC allows researchers to try to target ways to "turn off" that gene so that tumors stop growing and new ones can't develop. The Adenoid Cystic Carcinoma Research Foundation describes several clinical trials that are testing new drugs to do just that. Since ACC doesn't respond to chemotherapy, these "targeted agents" are the best shot at controlling this cancer systemically, instead of wearing patients down with the never ending Whac-A-Mole game.
My long term plan is to stay ahead of the game long enough for something to come down the pipeline that turns off the MYB gene alteration. The clinical trials going on now are still too dangerous for someone like me (a transplant patient) and the side effects are very toxic. Thankfully, the doctors at Hopkins understand all this and are willing to keep treating me, one tumor at a time. Given that this is my third recurrence in a year and that my total tumor count is 25+ in my lungs, one in my kidney and now one in my bones, most doctors would give up on me. Most employers would too, for that matter. But my doctors and my firm are amazing and they have seen for themselves that I'm pretty lucky with Whac-A-Mole. It has nothing to do with skill. It's all timing.
I have to believe that there's a reason there was so much good news in these latest scans mixed in with the bad. If it was all bad, the game would be over, which is unacceptable now that I have new introduce-Springsteen-to-my-family goals to achieve. In addition to bringing Mary's family to a Pittsburgh concert, I now have obtained consent to bring my Swedish relatives, the Lundbergs, to a Stockholm concert. Distantly related in ways I never remember, this lovely family promised to come with me when Bruce plays Stockholm on his next tour. Every few years Catarina, Joël, Benjamin and this year, David, visit their US relatives and see a bit of the States. At dinner the other night, they were so intelligently optimistic, with faith, compassion and a complete lack of fear for my future, I decided that in my next lifetime, I want to come back as a member of that family. They reminded me that assuming good things will take place in the future is the best way to cope with a seemingly endless game of Whac-A-Mole. If I can just slow it down, maybe more Swedish scientists will find a way to pull the plug on the machine all together. They were smart enough to find the cause of ACC, after all. And let's not forget about the invention of Swedish pancakes.
Kathy
CANcer + HEALth = CAN HEAL
Sunday, April 28, 2013
Hall of Fame: An Angel Earns Her Wings
Sometimes words just don't exist for life's curve balls. Emotions get all jumbled up and impossible to process. I've occasionally referred to a ten year old cancer fighter, Mya Terry, who recently underwent her third stem cell transplant, asking for your your prayers and positive thoughts (see 9/28/12 and 11/22/12 posts). On April 10th, Mya's suffering ended and this little angel earned her wings.
When Mya was five, she was diagnosed with Non-Hodgkins Lymphoma. After two years of chemotherapy and radiation, she might have been considered cancer free. But before she could catch her breath, she was diagnosed with Acute Myeloid Leukemia (AML), just like me, caused from the chemotherapy she received for the first cancer, just like me. She quickly received a stem cell transplant from a donor, but within a few months, she relapsed. After receiving a custom made regimen to get her back into remission, she suffered multiple organ failure, causing the second transplant to be delayed. She finally received the second transplant from a different donor in October 2011. Everything was going well until she relapsed again last summer.
Mya returned to St. Jude Children's Research Hospital in Tennessee and received her third transplant, this time from her parents, last September 2012. Her struggle to remain in remission was surpassed by complications from the treatment -- again, multiple organ failure. Keeping a 24 hour vigil for months in the ICU with the medical staff, Mya's family did everything they could to bring a sense of normalcy and hope to Mya and to themselves. The day before Mya was scheduled to return to New Jersey via Medivac, she rallied one last time to share precious moments with her parents, and slipped away.
I spoke with Mike and Kelly Terry over the phone just before Mya's last relapse to discuss the prospect of interviewing all three of them for a writing project. I was referred to them by friends, Matt and Jodi Savare (Matt is also a co-worker). Their son, one of triplets, was diagnosed with another form of leukemia (Acute Lymphocytic Leukemia, or ALL) when he was two and a half years old. I have been following Mya's story on her CaringBridge webpage, where Kelly kept everyone informed with moving and informative posts on Mya's journey. These posts were so important to me, I had to remind myself that I never actually met anyone in the family.
When I heard that Mya had taken flight, I was relieved for her, and devastated for Mike, Kelly and their son Michael, who was closer to his sister than siblings can ever be. The chances of a cure from AML get smaller with each relapse, so I can't say that it was a shock. But Mya's spirit was so strong.... It was as though the world wasn't quite ready for that much goodness and love. And yet, it was. As the Terrys write:
Perhaps the most amazing thing I learned the weekend that I attended the visitation and funeral (where I finally had a chance to meet Mike and Kelly), was that Mya published a book called "The Day I Got My NG Tube." Instead of writing a book on princesses or shopping or dolls, as you might expect of a ten year old, she wanted to help other kids who might be scared of getting a feeding tube.
The outpouring of support, grief and the need to pay tribute by the New Jersey shore community was like nothing I've ever seen. I arrived at the funeral home ten minutes after the visitation started and had to stand behind at least 100 people to get in. More than 150 were still in line when I left -- a sea of purple for Mya. Most of the eulogies given at the funeral were given by children, telling us how Mya changed their young lives. It was heartbreaking and beautiful all at the same time. A few days before Mya's passing, I heard a song on the radio by The Script that could have been written with Mya in Mind:
The essence of Mya Terry is best summed up in the message with which Kelly signed most of her posts, "N.E.G.U.!," Never Ever Give Up! Mya never gave up. I'm not giving up. I've never met a cancer survivor who didn't fight like hell. Cancer may take some, but it's warriors like Mya who give the rest of us the strength to keep fighting.
Stay tuned for more information on the foundation that will soon be set up "that will Pay It Forward to other research foundations, other smile foundations, other families, and other care centers" in Mya's honor. In the meantime, remember this little girl and be a champion.
Kathy
CANcer + HEALth = CAN HEAL
When Mya was five, she was diagnosed with Non-Hodgkins Lymphoma. After two years of chemotherapy and radiation, she might have been considered cancer free. But before she could catch her breath, she was diagnosed with Acute Myeloid Leukemia (AML), just like me, caused from the chemotherapy she received for the first cancer, just like me. She quickly received a stem cell transplant from a donor, but within a few months, she relapsed. After receiving a custom made regimen to get her back into remission, she suffered multiple organ failure, causing the second transplant to be delayed. She finally received the second transplant from a different donor in October 2011. Everything was going well until she relapsed again last summer.
Mya returned to St. Jude Children's Research Hospital in Tennessee and received her third transplant, this time from her parents, last September 2012. Her struggle to remain in remission was surpassed by complications from the treatment -- again, multiple organ failure. Keeping a 24 hour vigil for months in the ICU with the medical staff, Mya's family did everything they could to bring a sense of normalcy and hope to Mya and to themselves. The day before Mya was scheduled to return to New Jersey via Medivac, she rallied one last time to share precious moments with her parents, and slipped away.I spoke with Mike and Kelly Terry over the phone just before Mya's last relapse to discuss the prospect of interviewing all three of them for a writing project. I was referred to them by friends, Matt and Jodi Savare (Matt is also a co-worker). Their son, one of triplets, was diagnosed with another form of leukemia (Acute Lymphocytic Leukemia, or ALL) when he was two and a half years old. I have been following Mya's story on her CaringBridge webpage, where Kelly kept everyone informed with moving and informative posts on Mya's journey. These posts were so important to me, I had to remind myself that I never actually met anyone in the family.
When I heard that Mya had taken flight, I was relieved for her, and devastated for Mike, Kelly and their son Michael, who was closer to his sister than siblings can ever be. The chances of a cure from AML get smaller with each relapse, so I can't say that it was a shock. But Mya's spirit was so strong.... It was as though the world wasn't quite ready for that much goodness and love. And yet, it was. As the Terrys write:
Some of [Mya's] legacy efforts include St. Jude spokesperson at TUMI General Managers Conference in Long Branch, NJ; modeling for Back to School edition of the Money Saver Magazine; featured hero of the Leukemia and Lymphoma Society Pennies for Patients spokesperson; and Team Lead for Relay For Life. Mya performed as a guest chef at Nicholas in Middletown NJ; Ragin Cajun in Belmar, NJ; Tommy’s Coal Fire Grill in Oakhurst, NJ and was a St. Jude Executive Chef Assistant at Thanks and Giving Campaign Editor’s Conference in New York, NY....
Mya enjoyed being part of the Girl Scout Troup 100, Swimming, Playing Soccer, all things technical like her Iphone, Ipad and movie creating, crafting, cooking, gardening and riding her bike. Mya received the Kohl’s Cares Awards: Store Winner and Regional Winner in 2012. Her philanthropic activities include: Mya’s Mommy Bags, Bone Marrow Swabbing Drives; annual Blood Donation Drives and the Mya Sent Me - Pay It Forward/Random Act of Kindness Movement. Mya aspired to attend culinary school and open a restaurant, to become an oncology nurse and a veterinary volunteer.
Perhaps the most amazing thing I learned the weekend that I attended the visitation and funeral (where I finally had a chance to meet Mike and Kelly), was that Mya published a book called "The Day I Got My NG Tube." Instead of writing a book on princesses or shopping or dolls, as you might expect of a ten year old, she wanted to help other kids who might be scared of getting a feeding tube.The outpouring of support, grief and the need to pay tribute by the New Jersey shore community was like nothing I've ever seen. I arrived at the funeral home ten minutes after the visitation started and had to stand behind at least 100 people to get in. More than 150 were still in line when I left -- a sea of purple for Mya. Most of the eulogies given at the funeral were given by children, telling us how Mya changed their young lives. It was heartbreaking and beautiful all at the same time. A few days before Mya's passing, I heard a song on the radio by The Script that could have been written with Mya in Mind:
"Hall Of Fame"
Yeah, you can be the greatest
You can be the best
You can be the King Kong banging on your chest
You could beat the world
You could beat the war
You could talk to God, go banging on his door
You can throw your hands up
You can beat the clock (yeah)
You can move a mountain
You can break rocks
You can be a master
Don't wait for luck
Dedicate yourself and you go and find yourself
Standing in the hall of fame (yeah)
And the world's gonna know your name (yeah)
'Cause you burn with the brightest flame (yeah)
And the world's gonna know your name (yeah)
And you'll be on the walls of the hall of fame
You can go the distance
You can run the mile
You can walk straight through hell with a smile
You could be the hero
You could get the gold
Breaking all the records they thought never could be broke
Yeah, do it for your people
Do it for your pride
How you ever gonna know if you never even try?
Do it for your country
Do it for your name
'Cause there's gonna be a day...
When you're standing in the hall of fame (yeah)
And the world's gonna know your name (yeah)
'Cause you burn with the brightest flame (yeah)
And the world's gonna know your name (yeah)
And you'll be on the walls of the hall of fame
Be a champion, be a champion, be a champion, be a champion
On the walls of the hall of fame....
The essence of Mya Terry is best summed up in the message with which Kelly signed most of her posts, "N.E.G.U.!," Never Ever Give Up! Mya never gave up. I'm not giving up. I've never met a cancer survivor who didn't fight like hell. Cancer may take some, but it's warriors like Mya who give the rest of us the strength to keep fighting.Stay tuned for more information on the foundation that will soon be set up "that will Pay It Forward to other research foundations, other smile foundations, other families, and other care centers" in Mya's honor. In the meantime, remember this little girl and be a champion.
Kathy
CANcer + HEALth = CAN HEAL
Monday, February 25, 2013
Wrecking Ball
It was a week before I knew I had leukemia, October 2009. Michael N. and I went to the last
Springsteen concert, in fact the last concert ever, to be played in Giants
Stadium. We had tickets on the floor. We stood in line all day to get a good spot. And the show was outstanding. Bruce unveiled a newly written song about the stadium's demolition. Wrecking
Ball became a beloved Springsteen song for all who have ever been to the stadium, a must-have album and a legendary tour that he can’t seem to bring to
an end. This song is personal for me, even though it's really a song about New Jersey.
I mentioned in my August 5, 2012 post that Dr. Georgiades successfully ablated a very tricky tumor in an area of my lung called the hilar region. Since ablations can’t really be confirmed as successful for 3+ months, I was jumping the gun a little. Dr. G thought he killed the entire tumor, aiming his magic needle carefully in between two blood vessels in an area that is very congested with vital structures. He had to accomplish this without causing a “catastrophic event.” We discussed the risks and the danger of the procedure and decided to go for it, even though the hilar is considered a “no fly zone.” I asked him to do this because he’s that good and because the only other option was a fourth (and potentially crippling) lung surgery that would have destroyed my quality of life.
Unfortunately, the December scan showed that this ablation was not entirely successful. The scan showed active cancer surrounding the ablated area. In my first formal consultation with Dr. Hong (Dr. G relocated his practice and family back to Cypress), he told me that the danger of ablating an even bigger area in the hilar region was too great. “Perhaps radiation is an option for treating the rest of this tumor.” He referred me to a radiation oncologist, Dr.Russell Hales, for an opinion.
As the word “perhaps” echoed in my brain, he said, “In addition, the scan shows a rather large lesion in your right kidney.” He said that he “might” be able to ablate this using cryoablation (killing the tumor by freezing it rather that burning it), but a urologist would have to first insert a stent between my kidney and bladder to protect an important tube from collapsing. The other option would be, you guessed it, more surgery. Bring on your wrecking ball. Dr. Hong referred me to a urology oncologist for an opinion as to how to proceed, and said we would talk again after the two consults. I just sat there, unable to move.
A kidney biopsy of the new mystery
lesion in early January came back positive for more
ACCB. Bring on your wrecking ball. After much back and forth, the
urologist, my oncologist (Dr. Forte), Dr. Hong and I agreed that the safest way
to proceed was Dr. Hong’s initial plan: have
a stent inserted to protect my plumbing, followed the next day with a
cryoablation to freeze the tumor in my kidney.
The American Cancer Society has built hotel type lodging in several cities near well known hospitals for cancer patients who need long term treatment. Thankfully, the Hope Lodge near Hopkins had room for me when I was scheduled to begin all these procedures. I moved there on January 15th, and I lived there for almost a month. I was relieved that I completed radiation without any problems. I was able to work remotely the whole time, taking an hour each day to go to Hopkins for treatment. I finished radiation on February 5th, had the stent placed on the 7th, and the cryoablation took place on the 8th. Cathie helped me move back home on the 10th, I worked from home on the 11th, and returned to the office on the 12th. Of course this wasn’t as easy as it sounds. The kidney project involved two consecutive days of anesthesia, which is terribly hard on me, and there were other very painful issues those two days. But returning home to Sadie made me so happy, it was impossible to dwell on wrecking ball damage.
My kidney is starting to feel better, but my weight took a hit and the fatigue from radiation caught up with me. I've been sleeping 14-15 hours a day on the weekends, but I’m told this should improve very soon. I have to give special thanks to Michael P., Cathie, Karen and Mary for all their help during this latest battle. I can’t do any happy dances till I have the next PET/CT in early June, when I’ll learn if all these treatments worked. The patients and caregivers I met at Hope Lodge were amazing people with tremendous courage and a fierce will to live. Their hope was the No Surrender inspiration I needed to reload my weapons in this fight.
When your best hopes and desires, are scattered to the windI haven't posted an update since Thanksgiving because shortly after my last post I was hit with another wrecking ball. It took me awhile to regain Bruce's No Surrender attitude after I learned in early December that I had had another recurrence of the slow growing monster that I've been battling for 12 years, Adenoid Cystic Carcinoma of the Breast (ACCB). On December 7th, Pearl Harbor Day, I traveled to Baltimore for a follow up PET/CT to check on the two radiofrequency ablations ( RFAs) I had last summer. I planned to announce in my next post that all was well and I had No Evidence of Disease (NED in Cancer World). But instead the wrecking ball caught me off guard.
And hard times come, and hard times go
And hard times come, and hard times go...
Yeah just to come again
Bring on your wrecking ball
Come on and take your best shot, let me see what you've got
Bring on your wrecking ball
I mentioned in my August 5, 2012 post that Dr. Georgiades successfully ablated a very tricky tumor in an area of my lung called the hilar region. Since ablations can’t really be confirmed as successful for 3+ months, I was jumping the gun a little. Dr. G thought he killed the entire tumor, aiming his magic needle carefully in between two blood vessels in an area that is very congested with vital structures. He had to accomplish this without causing a “catastrophic event.” We discussed the risks and the danger of the procedure and decided to go for it, even though the hilar is considered a “no fly zone.” I asked him to do this because he’s that good and because the only other option was a fourth (and potentially crippling) lung surgery that would have destroyed my quality of life.
Unfortunately, the December scan showed that this ablation was not entirely successful. The scan showed active cancer surrounding the ablated area. In my first formal consultation with Dr. Hong (Dr. G relocated his practice and family back to Cypress), he told me that the danger of ablating an even bigger area in the hilar region was too great. “Perhaps radiation is an option for treating the rest of this tumor.” He referred me to a radiation oncologist, Dr.Russell Hales, for an opinion.
As the word “perhaps” echoed in my brain, he said, “In addition, the scan shows a rather large lesion in your right kidney.” He said that he “might” be able to ablate this using cryoablation (killing the tumor by freezing it rather that burning it), but a urologist would have to first insert a stent between my kidney and bladder to protect an important tube from collapsing. The other option would be, you guessed it, more surgery. Bring on your wrecking ball. Dr. Hong referred me to a urology oncologist for an opinion as to how to proceed, and said we would talk again after the two consults. I just sat there, unable to move.
So hold tight on your anger, hold tight on your angerJust before Christmas I went for both consultations. Convinced that my good luck in dodging bullets had run out, I braced for the dreaded dialogue that I’ve imagined since 2006: "You know, Ms. Seeley, for patients like you there comes a time when treatment is just not beneficial anymore." Thankfully, this was not the day for that conversation.
Hold tight to your anger, and don't fall to your fears
Dr. Hales said that the reason
the hilar is considered a “no fly zone” is because it’s too dangerous to fly
there. He also said that using conventional
radiation (30-40 daily treatments) for my type of cancer has not been terribly
successful. But there is a relatively
new technique called Stereotactic Body Radiation Therapy (SBRT), which uses a
higher dose of radiation in fewer treatments.
Dr. Hales brought my case before several other doctors from many different cancer disciplines, called a tumor board, and they concluded that going outside the box has worked well for me in the past. He said that was willing
to task his team of physicists to design a treatment plan for me that Hopkins has never done before. He proposed using SBRT for my rare type of cancer (a first) in the “no fly zone” (another first outside of a
clinical trial). Because there is no scientific data for a
case like mine, he couldn’t officially "recommend" this plan, but he
said that he would be willing to do it if that's what I wanted. Since leaving the tumor untreated would greatly accelerate my exit from this planet, the choice seemed obvious. I
decided to give Dr. Hales a shot at writing me up in a journal someday.
The American Cancer Society has built hotel type lodging in several cities near well known hospitals for cancer patients who need long term treatment. Thankfully, the Hope Lodge near Hopkins had room for me when I was scheduled to begin all these procedures. I moved there on January 15th, and I lived there for almost a month. I was relieved that I completed radiation without any problems. I was able to work remotely the whole time, taking an hour each day to go to Hopkins for treatment. I finished radiation on February 5th, had the stent placed on the 7th, and the cryoablation took place on the 8th. Cathie helped me move back home on the 10th, I worked from home on the 11th, and returned to the office on the 12th. Of course this wasn’t as easy as it sounds. The kidney project involved two consecutive days of anesthesia, which is terribly hard on me, and there were other very painful issues those two days. But returning home to Sadie made me so happy, it was impossible to dwell on wrecking ball damage.
My kidney is starting to feel better, but my weight took a hit and the fatigue from radiation caught up with me. I've been sleeping 14-15 hours a day on the weekends, but I’m told this should improve very soon. I have to give special thanks to Michael P., Cathie, Karen and Mary for all their help during this latest battle. I can’t do any happy dances till I have the next PET/CT in early June, when I’ll learn if all these treatments worked. The patients and caregivers I met at Hope Lodge were amazing people with tremendous courage and a fierce will to live. Their hope was the No Surrender inspiration I needed to reload my weapons in this fight.
It really is a great song.So if you got the guts mister, yeah if you've got the balls
If you think it's your time, then step to the line, and bring on your wrecking ball...
Kathy
CANcer + HEALth = CAN HEAL
Thursday, November 22, 2012
Giving Thanks During Stormy Times
Thanksgiving is a loaded holiday for many people this year. These last weeks have tested our patience, faith, and humanity. As we come together today, we appreciate more, give more, and love more.
I've been through a few hurricanes since moving to the East Coast in 1999. But Sandy was like nothing I ever hope to see again. During those days of no power, living with friends, the gas shortage, the images of massive devastation and loss of life, I grieved for the Jersey Shore, Staten Island, Long Island and other places that are still suffering. I heard Bruce in my head:
In the meantime, I continue to manage the complications mentioned in my last post from my lung surgery in August, 14 weeks ago. Issue #1: The invisible Ace bandage that felt like it was wrapped too tight around my core is still there. It's better, but not gone. Issue #2: The arm injury from positioning on the OR table is also still there, but also getting better. Issue #3: The burning in my skin has escalated and tests me like no other pain so far. Several experiments with drugs have not worked, but we're tweaking some dosages and I'm learning to balance the pain with the side effects. I have a new appreciation for people with continuous pain, every minute of every day. It can make you nuts. My pain specialist says I have Post Thoracotomy Pain Syndrome, which apparently is common after a major lung surgery. (I didn't technically have a thoracotomy, open lung surgery, but mine was major enough to cause this problem.) The good news is that this will heal on its own, eventually. An upcoming MRI of my back will show if there is nerve damage that may have been caused from the surgery that we can also treat.
As Sandy blasted through our lives, and during these medication experiments, my uncle Vic became gravely ill, his body finally shutting down after 9 years of serious complications from a massive stroke in 2003. (See March 4, 2012 post, What Doesn't Kill You...) Vic passed away peacefully at home on November 17th, with his wife, Patricia, of 57 years by his side. He was surrounded during his last days by his three sons, many grandchildren, friends, neighbors and caregivers. A full military funeral was held yesterday, and Vic was honored as he so graciously deserved. Again, I heard Bruce in my head:
And on that note, I ask all of you to send prayers, positive energy, shooting stars, magic lightening bolts, whatever you believe in, to the Universe, God and all that is good in the world for Mya, the 10 year old girl I spoke of in my last post. After undergoing a third and very difficult bone marrow transplant for AML in September, the transplant has failed and the leukemia is back. Today, on Thanksgiving, she will receive the first of five days of blasting chemo (the same chemo that, in the past, put her in ICU with triple organ failure) to kill the cancer, after which she will get a lymphocyte injection from her last donor (her mother). This process can be done a few times, and has worked in the past for some patients. It's a long shot. A Hail Mary. But it's a chance. Mya has been such a fighter, if she's not giving up, then neither should we. Again, her story is here.
As we sit together today with family and friends, passing the turkey and gravy, don't forget to pass around the hugs. Take a moment to look up in the sky and hug yourself too. Life is short and amazing. Gratitude should not be limited to one day of the year. It should be a way of life. Happy Thanksgiving everyone.
Kathy
CANcer + HEALth = CAN HEAL
I've been through a few hurricanes since moving to the East Coast in 1999. But Sandy was like nothing I ever hope to see again. During those days of no power, living with friends, the gas shortage, the images of massive devastation and loss of life, I grieved for the Jersey Shore, Staten Island, Long Island and other places that are still suffering. I heard Bruce in my head:
Everything dies baby that's a fact; But maybe everything that dies someday comes back; Put your makeup on fix your hair up pretty and meet me tonight in Atlantic City. (Atlantic City)My firm provided incredible support, leadership and guidance during this crisis, and I struggled to find a way to help my team. I shared the only advice I could think of: Eat the ice cream first! During this time of barely controlled chaos, we all realized how much we take modern conveniences for granted. We also saw people come together in ways that we couldn't have imagined. Call it what you will: the power of the human spirit, witnessing, living God's word, or just plain instinct, the world responded and tended to our wounds.
In the meantime, I continue to manage the complications mentioned in my last post from my lung surgery in August, 14 weeks ago. Issue #1: The invisible Ace bandage that felt like it was wrapped too tight around my core is still there. It's better, but not gone. Issue #2: The arm injury from positioning on the OR table is also still there, but also getting better. Issue #3: The burning in my skin has escalated and tests me like no other pain so far. Several experiments with drugs have not worked, but we're tweaking some dosages and I'm learning to balance the pain with the side effects. I have a new appreciation for people with continuous pain, every minute of every day. It can make you nuts. My pain specialist says I have Post Thoracotomy Pain Syndrome, which apparently is common after a major lung surgery. (I didn't technically have a thoracotomy, open lung surgery, but mine was major enough to cause this problem.) The good news is that this will heal on its own, eventually. An upcoming MRI of my back will show if there is nerve damage that may have been caused from the surgery that we can also treat.
As Sandy blasted through our lives, and during these medication experiments, my uncle Vic became gravely ill, his body finally shutting down after 9 years of serious complications from a massive stroke in 2003. (See March 4, 2012 post, What Doesn't Kill You...) Vic passed away peacefully at home on November 17th, with his wife, Patricia, of 57 years by his side. He was surrounded during his last days by his three sons, many grandchildren, friends, neighbors and caregivers. A full military funeral was held yesterday, and Vic was honored as he so graciously deserved. Again, I heard Bruce in my head:
They say you can't take it with you, but I think that they're wrongIronically, Vic passed away on my second transplant birthday. It was a day for recognizing the fragility of life and death.
'Cause all I know is I woke up this morning, and something big was gone...
The Mona Lisa, the David, the Sistine Chapel, Jesus, Mary, and Joe
And when they built you, brother, they broke the mold. (Terry's Song)
| June 2004 |
And on that note, I ask all of you to send prayers, positive energy, shooting stars, magic lightening bolts, whatever you believe in, to the Universe, God and all that is good in the world for Mya, the 10 year old girl I spoke of in my last post. After undergoing a third and very difficult bone marrow transplant for AML in September, the transplant has failed and the leukemia is back. Today, on Thanksgiving, she will receive the first of five days of blasting chemo (the same chemo that, in the past, put her in ICU with triple organ failure) to kill the cancer, after which she will get a lymphocyte injection from her last donor (her mother). This process can be done a few times, and has worked in the past for some patients. It's a long shot. A Hail Mary. But it's a chance. Mya has been such a fighter, if she's not giving up, then neither should we. Again, her story is here.
As we sit together today with family and friends, passing the turkey and gravy, don't forget to pass around the hugs. Take a moment to look up in the sky and hug yourself too. Life is short and amazing. Gratitude should not be limited to one day of the year. It should be a way of life. Happy Thanksgiving everyone.
Kathy
CANcer + HEALth = CAN HEAL
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