6 days ago
Showing posts with label Radiation. Show all posts
Showing posts with label Radiation. Show all posts
Monday, January 25, 2016
Tomorrow there'll be sunshine and all this darkness past...
There's really nothing quite like watching a frozen river during a snow storm. Seeing massive chunks of ice creep along in front of the Pittsburgh skyline is a very dramatic sight, especially from inside, where it's warm and toasty.
A few of you received advanced notice that my options have run out and I've decided to take advantage of the services that hospice provides at home. My last post talked about a few possibilities that I was going to pursue. These didn't really work out. The doctor in Virginia who specializes in proton therapy turned out to be a disappointment. About a week after returning from that very long road trip over the busiest travel weekend of the year (Thanksgiving), my breathing took another dive and I could not walk and breathe at the same time. I spent about a week in the hospital while the doctors tried to rule out some obvious causes for the problem -- blood clot, infection, collapsed lung, excess fluid, etc. The verdict was the same as it was when this first became a problem in the summer: my lungs are shot from progressing cancer and over 30 local treatments to control it over the past 15 years. Any additional radiation or ablations would do more harm than good and I'm not strong enough for more whack-a-mole attempts to stay ahead of this.
I had some tumor samples from the lung surgery in 2012 tested for genetic mutations to see if any experimental drugs might help slow things down. This also turned out to be a dead end. Even if there is something that might help prolong the inevitable for a few months, I've had more drugs to fight leukemia from 2009 through 2011 than anyone can expect to withstand in one lifetime.
We knew this day would come. I've been lucky to have made it this far with my history of 3 serious cancers. I'm now on oxygen 24/7 and I can't leave my apartment on my own two feet. My breathing problems make it difficult to talk, so I've limited my communications to email. I'm also not the type of person who wants people around when I'm sick, so these factors have led me to request that people not come to visit. It's easier on me in about a dozen ways, so I thank those of you who have respected these wishes.
I spend my day managing my symptoms, watching DVRd TV shows with Mary, as she works hard at being the world's best caregiver, and petting Sadie as much as she will let me. Watching the news and the ridiculous political campaigns keep me pondering what kind of world I'm leaving. I hope I'm around to see Donald Trump go down in flames. Hey, my blog, my opinion, my last wishes!
Along with Mary's daily visits to keep me sane, the hospice team comes almost everyday too and they are all wonderful. I wish they didn't have the reputation of call-only-when-the-person's-about-to-croak. I feel that hospice workers are misunderstood. They can provide help that no one else can and with experience and compassion. Knowing I will no longer receive any treatment, I don't have to worry about doctors' appointments, medical tests, or decisions about where to go next. I'm very grateful for my team here and the care I'm receiving. The goal of hospice is to make me feel as comfortable as possible.
It may take several months for my body to call it quits. Or it may not. I feel like my body deserves a rest and I'm not at all afraid of dying. I will leave this life knowing that I have given it my very best shot -- chasing down doctors, medical techniques, research, and advice from the amazing community of ACC patients all over the world.
I know that most people fear everything about death and dying -- even talking about it. Much more destructive than death, in my opinion, is denial. Denial will wreck you. When someone tells you that they've made a decision about how to live or die, don't deny them your support and unconditional love. Most people, in their grief and anticipated loss, just don't know what to do or say. It's hard for everyone. But it's mostly hard for the patient. Here are a few dos and don'ts when it comes to things to say to a cancer patient (or about me):
1. "She lost her battle to cancer." (Read here.) The implication is that I just didn't fight hard enough. Nothing could be more offensive.
2. "God never gives you more than you can handle." This is another annoying cliché. The God I believe in would never test people to see how much they can handle. How mean would that be?
3. "Everything happens for a reason." Really? Bullshit. This is one of the most insulting things a cancer patient can hear. Classic Blame The Victim.
4. "What is your prognosis?" Well, if it's not good, you've just made the person feel like crap having to explain that they're in bad shape.
And the list goes on....
The problem is that people don't have any good examples of helpful, loving ways to express support instead of these unhelpful blunders. A better approach would be to ask them what they need and how you can help. Then listen to what they say and do it, whether you agree with it or not. It's their illness, not yours.
And now that I've rambled on and on, I can't say for sure if this will be my last blog post or not. As with everything in life, we should assume that this moment is our last and cherish what we have right now.
As long as I can stay in the present, I can honestly say that I am happy that this will soon be over. It's hard for my ego not to make a mental wish list for my next lifetime. My faith is in the Higher Power that resides in all of us, so I'm good with whatever comes next. I'm hoping that if I end up on Earth again, I'll have better hair and dimples, but who's to say that would make me happy? For now, I'll watch my DVRd TV shows (suggestions for binge watching are welcome), enjoy Sadie and watch the river just outside my door. My energy comes and goes, so please forgive me if I take a while, or can't, respond to your messages. Know that they are received and appreciated.
I want to thank all of you for your love and support when I've been sick and when I've been well. I'm a very lucky person to have known all of you, even those of you I've never met in person. Take care of your bodies, take care of each other, take care of the planet.
I love you all.
Kathy
CANcer + HEALth = CAN HEAL
Sunday, October 25, 2015
Hard times come, and hard times go... Yeah just to come again
I'm a nester. It's all about comfort for me. My massage therapist, Marty, begins each session telling me to imagine a place that makes me happy. He suggests a beach, the mountains, a favorite vacation spot. I imagine lying on my new couch, with the softest throw ever made and Sadie sleeping on my lap. It's the best Happy Place I could ever hope for. Comfort is serving an important role in my life these days. It buffers what most would see as bad news.
I received the Hopkins interpretation of the scans I had earlier this month in Pittsburgh. They show new areas of cancer in my lungs, some old areas that have grown, and some that have stayed the same. The most dangerous tumor in the hilar region that has already been ablated and radiated seems to be stable. But because it is still active, it's still very dangerous. Also, it was reported that some tumors in the lining of my lungs (the pleura) are infiltrating my chest wall. Other scary things are described to the point of being overwhelming. However, everything that's growing isn't growing super fast and nothing is measuring too big to treat. The problem is that there is too much to treat.
I can't really say that this is a surprise. I've had bad scans before and somehow my doctors have managed to address everything one crisis at a time. But now that I have such trouble breathing, the risk benefit analysis of continuing with the Whack-A-Mole approach becomes questionable, as Dr. Georgiades wrote to me. Every ablation requires a 1 cm. margin that kills healthy tissue to ensure the ablation is successful. Every radiation plan also kills some healthy tissue and creates scarring as the beams travel to and from the targeted area. Considering all my past procedures, my remaining lung mass needs to be preserved as much as possible (I lost about 30% over 3 surgeries).
With the shortness of breath and wheezing I now have, I have to consider the impact on the quality of life that more Whack-A-Mole would have. I'm reminded of Joe Biden. If I'm going to be in this race, I need to decide if I have what it takes before my window of opportunity closes. Time for more opinions. Many ACC patients go to radiation oncologists who offer proton beam radiation. Standard radiation is with photons. One is just as precise as the other, but proton therapy is a newer technique that eliminates the "exit path" of the beam. "Higher doses of radiation can be used to control and manage cancer while significantly reducing damage to healthy tissue and vital organs." Hopkins is building a proton center, but it won't be ready until 2017. There are 15 proton centers in the US and a couple of them have seem many, many ACC patients. Looks like I'll have a road trip or two to talk to the doctors who have treated so many of my ACC brothers and sisters.
In the meantime, I am having my tumors genetically profiled by two separate labs to determine if I have any cancer mutations. If I do, there may be a clinical trial open that targets that particular mutation. I should know the results of these tests in a month or two. Having one or more mutations doesn't give me more options per se. But it would get me closer to the possibility of finding a drug that might stop my tumors from growing -- or, best case scenario, shrinking them -- for awhile. Most trial results so far only show that the drug works until ACC finds a way around it. This disease is a monster. But it's still a hopeful time for us. Science is moving so fast, cancer is being redefined by genetic research. Since there's a lot of money to be made from this, innovation is moving at warp speed.
Back to Marty. When I shared my news with him, he asked me how I'm coping with it all and if I'm okay. I really am, for two reasons. 1. I'm getting used to this roller coaster. My stomach still lurches as I plunge downward. But I don't puke with fear like I used to. I think this is because I have recovered from circumstances that appeared hopeless. Statistically, I never should have lived through leukemia in 2009 or the many ACC battles since then. 2. I'm focusing on comfort. My nesting nature is in high gear. As I slowly taper off steroids (given to see if they help my breathing), my mind spins with ideas for increasing comfort. I decided to buy an adjustable bed. I often have to prop myself up in the middle of the night to help me breathe, so it made sense. And since I was headed for a hospital bed at some point in the future, why not get a plush, super comfy memory foam bed now, while I can enjoy it? Normal people are getting them, according to the commercials, so I don't feel like a cancer-patient-hospital-bed person. My new Happy Place, with all its bells and whistles, was delivered on Friday, it fits perfectly in my bed frame, it is beautiful, and my sleep is amazing! With a wireless remote to control the head, feet and massage features, I'm too happy to be depressed. Sadie was very suspicious. I watched with evil curiosity to see if, upon raising the feet, she was cat-a-pulted as a projectile to the top of the bed! (Thanks, Laura, for the pun. I'm sure Cheryl will appreciate it.)
I've found that Retail Therapy is good for my psyche. Comfort through consumerism. As I look forward to Thanksgiving with Mary and her family in Pittsburgh for the first time, I can't be anything other than grateful for my new life, regardless of what the next chapter reveals. As much as people deny it, we're all living on borrowed time. I just have a little more information on the time I have left than most people do. Make every day Thanksgiving. Find comfort in your life. Buy an adjustable bed.
Kathy
CANcer + HEALth = CAN HEAL
I received the Hopkins interpretation of the scans I had earlier this month in Pittsburgh. They show new areas of cancer in my lungs, some old areas that have grown, and some that have stayed the same. The most dangerous tumor in the hilar region that has already been ablated and radiated seems to be stable. But because it is still active, it's still very dangerous. Also, it was reported that some tumors in the lining of my lungs (the pleura) are infiltrating my chest wall. Other scary things are described to the point of being overwhelming. However, everything that's growing isn't growing super fast and nothing is measuring too big to treat. The problem is that there is too much to treat.
I can't really say that this is a surprise. I've had bad scans before and somehow my doctors have managed to address everything one crisis at a time. But now that I have such trouble breathing, the risk benefit analysis of continuing with the Whack-A-Mole approach becomes questionable, as Dr. Georgiades wrote to me. Every ablation requires a 1 cm. margin that kills healthy tissue to ensure the ablation is successful. Every radiation plan also kills some healthy tissue and creates scarring as the beams travel to and from the targeted area. Considering all my past procedures, my remaining lung mass needs to be preserved as much as possible (I lost about 30% over 3 surgeries).
With the shortness of breath and wheezing I now have, I have to consider the impact on the quality of life that more Whack-A-Mole would have. I'm reminded of Joe Biden. If I'm going to be in this race, I need to decide if I have what it takes before my window of opportunity closes. Time for more opinions. Many ACC patients go to radiation oncologists who offer proton beam radiation. Standard radiation is with photons. One is just as precise as the other, but proton therapy is a newer technique that eliminates the "exit path" of the beam. "Higher doses of radiation can be used to control and manage cancer while significantly reducing damage to healthy tissue and vital organs." Hopkins is building a proton center, but it won't be ready until 2017. There are 15 proton centers in the US and a couple of them have seem many, many ACC patients. Looks like I'll have a road trip or two to talk to the doctors who have treated so many of my ACC brothers and sisters.
In the meantime, I am having my tumors genetically profiled by two separate labs to determine if I have any cancer mutations. If I do, there may be a clinical trial open that targets that particular mutation. I should know the results of these tests in a month or two. Having one or more mutations doesn't give me more options per se. But it would get me closer to the possibility of finding a drug that might stop my tumors from growing -- or, best case scenario, shrinking them -- for awhile. Most trial results so far only show that the drug works until ACC finds a way around it. This disease is a monster. But it's still a hopeful time for us. Science is moving so fast, cancer is being redefined by genetic research. Since there's a lot of money to be made from this, innovation is moving at warp speed.
Back to Marty. When I shared my news with him, he asked me how I'm coping with it all and if I'm okay. I really am, for two reasons. 1. I'm getting used to this roller coaster. My stomach still lurches as I plunge downward. But I don't puke with fear like I used to. I think this is because I have recovered from circumstances that appeared hopeless. Statistically, I never should have lived through leukemia in 2009 or the many ACC battles since then. 2. I'm focusing on comfort. My nesting nature is in high gear. As I slowly taper off steroids (given to see if they help my breathing), my mind spins with ideas for increasing comfort. I decided to buy an adjustable bed. I often have to prop myself up in the middle of the night to help me breathe, so it made sense. And since I was headed for a hospital bed at some point in the future, why not get a plush, super comfy memory foam bed now, while I can enjoy it? Normal people are getting them, according to the commercials, so I don't feel like a cancer-patient-hospital-bed person. My new Happy Place, with all its bells and whistles, was delivered on Friday, it fits perfectly in my bed frame, it is beautiful, and my sleep is amazing! With a wireless remote to control the head, feet and massage features, I'm too happy to be depressed. Sadie was very suspicious. I watched with evil curiosity to see if, upon raising the feet, she was cat-a-pulted as a projectile to the top of the bed! (Thanks, Laura, for the pun. I'm sure Cheryl will appreciate it.)
I've found that Retail Therapy is good for my psyche. Comfort through consumerism. As I look forward to Thanksgiving with Mary and her family in Pittsburgh for the first time, I can't be anything other than grateful for my new life, regardless of what the next chapter reveals. As much as people deny it, we're all living on borrowed time. I just have a little more information on the time I have left than most people do. Make every day Thanksgiving. Find comfort in your life. Buy an adjustable bed.
Kathy
CANcer + HEALth = CAN HEAL
Sunday, March 22, 2015
Changing Times
Goodbye winter! I had to laugh as I watched spring roll in after an entire day of slow, steady snow last Friday. This winter wasn't as brutal and violent as last year, with crushed bones and several trips to the ER, but it was long and cruel. January blew in with a breast cancer diagnosis and out with one less boob.
February greeted me with tumors in random places that forced my Hopkins doctors to come up with yet more creative treatment plans. I had a left side tumor in the soft tissue that holds my abdominal organs together that grew under the radar into a rather large monster. And I had a small right side tumor that was tiny but very painful, close to the surface of the skin, also in the soft tissue. Dr. Hong performed a cryoablation to the left side monster at the end of February.
March greeted me with uncontrolled pain and swelling after that ablation -- the first time I've had trouble after any of my 11 ablations. It wasn't a complication of the procedure, it was a complication of me. I have pretty bad scoliosis and the monster tumor just happened to be in the area where my crooked back was the most crooked. There was no place for the expected inflammation from the ablation to go and it shocked my abdominal organs into, well, not working. I eventually ended up in the hospital for a few days of tests and fluids, which got things working again, but I still have a lot of pain in my left hip. It feels like someone dropped me on the floor, hip first, while I was under sedation in the OR. Dr. Hong assured me that this did not happen, but who knows what really goes on in those ORs? On Grey's Anatomy they all just gossip and don't really pay much attention till the patient is coding. But I believe Dr. Hong. He would have noticed if someone threw me on the floor.
Last Thursday Dr. Hales gave me a strong dose of radiation to the small pea sized right side tumor, and by the time I got off the table, the pain in that spot was gone. I'm now free to roam about the cabin till the end of June, when I will have another PET/CT and find out what this crazy, unpredictable cancer has in store for me next. I'm hoping for a long period of stable lung tumors and no more random tumors outside my organs, where they don't belong!
April will keep me busy preparing for my big move to Pittsburgh. The date has been set for April 30th and I'm very excited. Mary found a super great apartment for me in a swanky complex where I'll have covered parking (for the 9 months of snow) and a beautiful view of the Allegheny River and downtown Pittsburgh.
Because of the timing of my move, I will not be able to attend the Adenoid Cystic Carcinoma Research Foundation (ACCRF) survivor events this April in Boston. I will miss meeting other survivors and caregivers and the research update from the Executive Director of the Foundation, Jeffrey Kaufman. The organizers decided to go green this year for the fundraising portion of the events. Instead of their usual fundraising efforts and silent auction, ACCRF is holding a stay-at-home, cyber fundraiser to reach more people in an effort to further their research in finding a cure for this insidious disease. Rather than me telling you how horribly disfiguring and awful ACC is, I'm just going to ask that you trust me on this. ACC usually attacks glands in the head and neck and most people suffer tremendously from its slow, cruel assaults. The more ACC survivors I meet, the more amazed I am at what the human body can endure. Please consider supporting this effort, and me: www.accrf.org.
In the meantime, I thank you all for your continued support over these long 14 years. Here's wishing you a wonderful spring, full of health and happiness. Come and visit me sometime in Pittsburgh!
Kathy
CANcer + HEALth = CAN HEAL
February greeted me with tumors in random places that forced my Hopkins doctors to come up with yet more creative treatment plans. I had a left side tumor in the soft tissue that holds my abdominal organs together that grew under the radar into a rather large monster. And I had a small right side tumor that was tiny but very painful, close to the surface of the skin, also in the soft tissue. Dr. Hong performed a cryoablation to the left side monster at the end of February.
March greeted me with uncontrolled pain and swelling after that ablation -- the first time I've had trouble after any of my 11 ablations. It wasn't a complication of the procedure, it was a complication of me. I have pretty bad scoliosis and the monster tumor just happened to be in the area where my crooked back was the most crooked. There was no place for the expected inflammation from the ablation to go and it shocked my abdominal organs into, well, not working. I eventually ended up in the hospital for a few days of tests and fluids, which got things working again, but I still have a lot of pain in my left hip. It feels like someone dropped me on the floor, hip first, while I was under sedation in the OR. Dr. Hong assured me that this did not happen, but who knows what really goes on in those ORs? On Grey's Anatomy they all just gossip and don't really pay much attention till the patient is coding. But I believe Dr. Hong. He would have noticed if someone threw me on the floor.
Last Thursday Dr. Hales gave me a strong dose of radiation to the small pea sized right side tumor, and by the time I got off the table, the pain in that spot was gone. I'm now free to roam about the cabin till the end of June, when I will have another PET/CT and find out what this crazy, unpredictable cancer has in store for me next. I'm hoping for a long period of stable lung tumors and no more random tumors outside my organs, where they don't belong!
April will keep me busy preparing for my big move to Pittsburgh. The date has been set for April 30th and I'm very excited. Mary found a super great apartment for me in a swanky complex where I'll have covered parking (for the 9 months of snow) and a beautiful view of the Allegheny River and downtown Pittsburgh.
Because of the timing of my move, I will not be able to attend the Adenoid Cystic Carcinoma Research Foundation (ACCRF) survivor events this April in Boston. I will miss meeting other survivors and caregivers and the research update from the Executive Director of the Foundation, Jeffrey Kaufman. The organizers decided to go green this year for the fundraising portion of the events. Instead of their usual fundraising efforts and silent auction, ACCRF is holding a stay-at-home, cyber fundraiser to reach more people in an effort to further their research in finding a cure for this insidious disease. Rather than me telling you how horribly disfiguring and awful ACC is, I'm just going to ask that you trust me on this. ACC usually attacks glands in the head and neck and most people suffer tremendously from its slow, cruel assaults. The more ACC survivors I meet, the more amazed I am at what the human body can endure. Please consider supporting this effort, and me: www.accrf.org.
In the meantime, I thank you all for your continued support over these long 14 years. Here's wishing you a wonderful spring, full of health and happiness. Come and visit me sometime in Pittsburgh!
Kathy
CANcer + HEALth = CAN HEAL
Friday, November 7, 2014
Room 207
November is here, and I'm finally coming out of my cocoon, where I unplugged from All Things Cancer for a while. I finished having 15 radiation treatments at Johns Hopkins on October 28th and raced home to reunite with Sadie. I missed her terribly, and since returning home I can't keep my hands off her. She was very happy to see me until she realized I had been gone for a long time. Then I got the look: She practically had her paw on her hip, tilted her head and meowed, "Where the f*** have you been?"
All went well with the radiation treatments. Since the cryoablation was in the same area 3 weeks earlier, it's hard to tell what soreness was caused by what. I began to have a hard time swallowing, which was caused by inflammation from radiation near my esophagus. But that eventually went away. After I got home, I developed a burning rash at the site of the radiation near my collar bone, which is still annoying me. Graft vs. Host Disease (GVHD) is starting to kick in, which happens whenever my new immune system takes a hit. And, as predicted, instead of sleeping my usual 10 hours a night, I'm now sleeping about 12. But I also see signs that the Cone of Cancer I described in my last post has taken a beating. For a year or more I've had extremely sharp pain in my chest whenever I sneezed or coughed. I'm very happy to report that this no longer happens. My left side is still a mess. I have chronic pain in my left ribs and nerve pain in my left arm from the last lung surgery in August 2012. It will be awhile until I can wear the shoulder strap of my seat belt across my chest, but I think I might continue to notice less pain in some places. It's been a long time since I've been able to say that!
I was able to keep myself busy while in Baltimore. I used my appointments with Dr. Hales to ask about current trends in radiation research, I spoke with several Adenoid Cystic Carcinoma patients who were trying to navigate the choppy waters of treatment options, and I even found the chutzpah to suggest a future research project in which Dr. Hong and Dr. Hales could team up for the benefit of ACC patients around the world. I met up with Diane and her husband, Rick, when Diane had her first RFA with Dr. Hong. A few days later, I met up with Len and his sister and brother-in-law as Len also had his first RFA with Dr. Hong. Since my radiation treatments were managed by Dr. Hales, Dr. Hong was confused as to why I kept showing up in his recovery rooms. I also got together with Michele, a very brave ACC warrior, and her husband Tom, a very brave Acute Myeloid Leukemia survivor.
Adding to this community of survivorship, I stayed at Hope Lodge, one of the American Cancer Society's free housing sites for patients and their caregivers. I mentioned in my last post that I happened to be assigned to Room 207, the exact same room I had when I underwent another 15 day radiation plan to the other lung almost two years ago in early 2013. There is instant acceptance at Hope Lodge because, despite the fear, everyone is hopeful and supportive of everyone's battle against a common enemy.
Most of us feel like crap, yet everyone finds a way to laugh, tell jokes, share stories and welcome the distractions of a lively game of bingo or a community dinner. One night I taught an elderly couple how to play Candy Crush, and after the woman retired for the night, I later saw her husband glued to the computer in the library, sitting in the dark, determined to make it past level 5. Several times a week local medical schools, churches, community groups and past residents of Hope Lodge prepare dinner for everyone, giving us a chance to talk about whatever might be going on while getting a break from meal preparation. Since most of you know that oatmeal in the morning is the extent of any meal preparation that I engage in, this was a huge benefit that I greatly appreciated.
It's hard not to make new friends at Hope Lodge. I got together with Jake and Lisa, two friends from when I stayed there the first time, and I hope to stay in touch with my new buddies, including Vern, Patrick and Donna, and others. The managers, staff and volunteers are truly dedicated to providing support and comfort in any way they can, during very difficult times for many people. It reminds me of one of my favorite Bruce songs:
This holiday season I wish that all those in pain and feeling alone can find their Room 207 -- a place for hope, love and community -- for this part of the ride, and always.
Kathy
CANcer + HEALth = CAN HEAL
All went well with the radiation treatments. Since the cryoablation was in the same area 3 weeks earlier, it's hard to tell what soreness was caused by what. I began to have a hard time swallowing, which was caused by inflammation from radiation near my esophagus. But that eventually went away. After I got home, I developed a burning rash at the site of the radiation near my collar bone, which is still annoying me. Graft vs. Host Disease (GVHD) is starting to kick in, which happens whenever my new immune system takes a hit. And, as predicted, instead of sleeping my usual 10 hours a night, I'm now sleeping about 12. But I also see signs that the Cone of Cancer I described in my last post has taken a beating. For a year or more I've had extremely sharp pain in my chest whenever I sneezed or coughed. I'm very happy to report that this no longer happens. My left side is still a mess. I have chronic pain in my left ribs and nerve pain in my left arm from the last lung surgery in August 2012. It will be awhile until I can wear the shoulder strap of my seat belt across my chest, but I think I might continue to notice less pain in some places. It's been a long time since I've been able to say that!
I was able to keep myself busy while in Baltimore. I used my appointments with Dr. Hales to ask about current trends in radiation research, I spoke with several Adenoid Cystic Carcinoma patients who were trying to navigate the choppy waters of treatment options, and I even found the chutzpah to suggest a future research project in which Dr. Hong and Dr. Hales could team up for the benefit of ACC patients around the world. I met up with Diane and her husband, Rick, when Diane had her first RFA with Dr. Hong. A few days later, I met up with Len and his sister and brother-in-law as Len also had his first RFA with Dr. Hong. Since my radiation treatments were managed by Dr. Hales, Dr. Hong was confused as to why I kept showing up in his recovery rooms. I also got together with Michele, a very brave ACC warrior, and her husband Tom, a very brave Acute Myeloid Leukemia survivor.
Adding to this community of survivorship, I stayed at Hope Lodge, one of the American Cancer Society's free housing sites for patients and their caregivers. I mentioned in my last post that I happened to be assigned to Room 207, the exact same room I had when I underwent another 15 day radiation plan to the other lung almost two years ago in early 2013. There is instant acceptance at Hope Lodge because, despite the fear, everyone is hopeful and supportive of everyone's battle against a common enemy.
Most of us feel like crap, yet everyone finds a way to laugh, tell jokes, share stories and welcome the distractions of a lively game of bingo or a community dinner. One night I taught an elderly couple how to play Candy Crush, and after the woman retired for the night, I later saw her husband glued to the computer in the library, sitting in the dark, determined to make it past level 5. Several times a week local medical schools, churches, community groups and past residents of Hope Lodge prepare dinner for everyone, giving us a chance to talk about whatever might be going on while getting a break from meal preparation. Since most of you know that oatmeal in the morning is the extent of any meal preparation that I engage in, this was a huge benefit that I greatly appreciated.
It's hard not to make new friends at Hope Lodge. I got together with Jake and Lisa, two friends from when I stayed there the first time, and I hope to stay in touch with my new buddies, including Vern, Patrick and Donna, and others. The managers, staff and volunteers are truly dedicated to providing support and comfort in any way they can, during very difficult times for many people. It reminds me of one of my favorite Bruce songs:
Well I will provide for youAs long as I can keep my feet firmly on the ground (I bought cleats to put over my shoes this winter!), I have reason to celebrate the end of a very difficult year. November 17th is the 4th anniversary of my stem cell transplant -- my second birthday. I still can't believe I got through that. And I'm confident that the Cone of Cancer is dead, leaving me able to recover some energy and work on downsizing all things material (and unimportant in the grand scheme of things) in preparation for my move to warm and sunny Pittsburgh. Thankfully, I have no plans to return to Baltimore before early February, when I'll have another set of scans.
And I'll stand by your side
You'll need a good companion now
For this part of your ride
Leave behind your sorrows
Let this day be the last
Tomorrow there'll be sunshine
And all this darkness past (Bruce Springsteen, Land of Hope and Dreams)
This holiday season I wish that all those in pain and feeling alone can find their Room 207 -- a place for hope, love and community -- for this part of the ride, and always.
Kathy
CANcer + HEALth = CAN HEAL
Sunday, October 12, 2014
Sports, donuts and a battle against a Cone of Cancer
There seems to be an odd connection between Baltimore's sports teams making it to the playoffs and my radiation visits to this loyal, fan-driven city. In January/February 2013 I was here for a month having radiation treatments to a stubborn tumor in the hilar region of my right lung -- a very dangerous area -- followed by a cryoablation to a large kidney tumor. See 2/25/13 post. It was a very stressful time, but I was distracted by watching the city whip itself into a frenzy with the Ravens going to the Super Bowl. I'll never forget the sea of purple at Hopkins as I walked in every day to get zapped. Everyone wore football jerseys and there were purple donuts and balloons everywhere. I watched the game at Hope Lodge with my new found kindred spirits as we feasted on a spread of football food and, for the night, we all forgot that we had cancer.
Here I am again, back at Hope Lodge during the championship series with Baltimore now in a sea of orange, rooting for the Orioles. Even more bizarre is that I'm staying in the exact same room I had last time! The Orioles have to advance to the World Series, just so I can have an orange donut and witness the staff in different sports jerseys.
You may remember in my last post I mentioned that I would have to have radiation to an "area of thickening" that Dr. Hong saw when he performed the cryoablation in the lining (pleura) of my left lung a month ago. He referred me back to Dr. Hales, my back-up pitcher (couldn't resist) whenever Dr. Hong doesn't feel that ablations are the safest option for whatever is going on. The top of my left lung, or the apex, is shaped like a cone leading down to the rest of my lung. This cone starts just 2 cm. down from the top of my shoulder. This thickened area is like a caking that goes around the top of the cone. Treating this Cone of Cancer should be done sooner rather than later because the pleura is like a 2 layered slip-and-slide, allowing me to breathe in and out without pain. If the slip-and-slide gets stuck, well, then there's pain, not to mention cancer getting the upper hand.
Dr. Hales told me that coming up with a treatment plan that kills the Cone of Cancer while sparing the healthy tissue inside the cone is tricky. Is there any other way with me? Sometimes I feel like my purpose is to challenge the medical industry's commitment to innovation.
There are a lot of different types of radiation. Some machines treat areas that are diffuse, like this Cone of Cancer. Some machines are very precise, honing in on a very targeted area. Both are used for a host of reasons depending on the type of cancer, the area in the body, the size of the target, the ability of the patient to tolerate the treatment, the dose that's required to kill the cancer and a lot of other variables. The science is overwhelmingly complicated. Dr. Hales and his team of physicists decided to treat me on a new machine that Hopkins just got last month. The Versa HD (high dose, not high definition) was just launched by a Swedish company called Elekta in March. It combines several types of radiation delivery methods so that I get precision and diffuse treatments wherever I need them. Plus, the beams actually bend to treat areas like this cone, which has a messy shape, while protecting the healthy tissue inside. I'll have 15 sessions total -- three down, 12 to go -- and I'll be home by the end of the month.
The effort of packing and moving to Baltimore was difficult, especially after last month's cryoablation. I'm sleeping 10-11 hours a night (I know!). Fatigue always sets in toward the end and after treatments, so I can't imagine my energy level a month from now. I'll be sleeping as much as Sadie! Oh, I miss my kitty. She's in good hands with my neighbor, Michael, whose sons will hopefully give her a workout every now and then. As for my pain, time will tell with that too. Since the cryoablation and the radiation treatments are in the same area of my upper pleura, I can't tell what's causing what and what might be temporary as opposed to ongoing. I'll just be glad to have the treatments over so that I can regain my energy and strength over the next several months as I slowly downsize for my move to Pittsburgh in the spring.
For now, I'll keep rooting for the Orioles and stay true to my temporary home. I'm told that they rally at the last minute, when things look really grim. Who does that remind you of? I'm determined that by the time I leave here, I'll have had my orange donut.
Kathy
CANcer + HEALth = CAN HEAL
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