tag:blogger.com,1999:blog-91937397549263677252024-02-19T07:40:58.038-05:00A Rare Cancer JourneyMy journey began when I was diagnosed with an extremely rare form of cancer in 2000. When more cancer was found in 2006, I assumed it was the end of the road. Fate, prayer and research led me to a technique that saved my life. I had barely finished celebrating when, in 2009, I was diagnosed with leukemia. Since I can’t get off at the next exit, I’m doing all I can to grab the wheel and steer my way to health. If I can’t control the journey, at least I can make sure I’m in the driver’s seat.Maryhttp://www.blogger.com/profile/08121515983398041707noreply@blogger.comBlogger96125tag:blogger.com,1999:blog-9193739754926367725.post-8203121029497031692016-01-25T19:05:00.000-05:002016-01-25T19:05:08.848-05:00Tomorrow there'll be sunshine and all this darkness past...<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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. </span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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. </span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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! </span><br />
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<span style="font-size: large;">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. </span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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): </span><br />
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<span style="font-size: large;">1. "She lost her battle to cancer." </span><span style="font-size: large;"> (<a href="http://ararecancerjourney.blogspot.com/2009/08/does-anyone-really-lose-their-battle.html" target="_blank">Read here.</a>)</span> <span style="font-size: large;">The implication is that I just didn't fight hard enough. Nothing could be more offensive.</span><br />
<span style="font-size: large;">2. "God never gives you more than you can handle." This is another annoying clich</span><span style="line-height: 107%;"><span style="font-family: inherit; font-size: large;">é</span></span><span style="font-size: large;">. The God I believe in would never test people to see how much they can handle. How mean would that be?</span><br />
<span style="font-size: large;">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.</span><br />
<span style="font-size: large;">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. </span><br />
<span style="font-size: large;">And the list goes on....</span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">I love you all.</span><br />
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<span style="font-size: large;">Kathy</span><br />
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<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com15tag:blogger.com,1999:blog-9193739754926367725.post-86307271839243938252016-01-24T19:03:00.000-05:002016-01-24T19:03:47.972-05:00Lucky or unlucky?<br />
<span style="font-size: large;">Hey folks,</span><br />
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<span style="font-size: large;">I know I owe many of you email replies to all your generous wishes, and I'll get to them, I promise! I will also post an update about my current health status shortly. But for now, here is an article that I wrote for the University of Pittsburgh Medical Center. The publication is called HEADWAY. Here is the <a href="http://upci.upmc.edu/spore/headneck/pdf/Headway_Winter2016.pdf" target="_blank">link to the article (see page 2)</a>, in case you can't read the small print.</span><br />
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<span style="font-size: large;">Kathy </span></div>
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<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com1tag:blogger.com,1999:blog-9193739754926367725.post-18964863355334985642015-10-25T17:34:00.002-04:002015-10-25T17:34:07.238-04:00Hard times come, and hard times go... Yeah just to come again<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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. </span><br />
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<span style="font-size: large;">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). </span><br />
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<span style="font-size: large;">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 <a href="http://www.proton-therapy.org/howit.htm" target="_blank">proton beam radiation</a>. 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.</span><br />
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<span style="font-size: large;">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. </span><span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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.) </span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">Kathy</span><br />
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<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com2tag:blogger.com,1999:blog-9193739754926367725.post-8913999542651650382015-08-28T19:48:00.000-04:002015-08-28T19:48:11.614-04:00Hello from Pittsburgh!<span style="font-size: large;">It's been a while, I know. This year started out with a bang with the breast cancer diagnosis, the cryoablation to a mystery tumor in my left side, the chaotic recovery that that caused, and the hunt for an apartment in Pittsburgh. My plan was to post once things settled down after the move, but I'm having some trouble breathing and I had hoped to report a resolution to the problem in that post. Now we're ending what has been a beautiful summer and I'm still looking for that resolution.</span><br />
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<span style="font-size: large;">Mary found the perfect apartment complex for all my needs and Sadie and I are enjoying it very much. It's a small one bedroom, but perfect for us with big windows in each room overlooking the Allegheny River and the Three Rivers Trail about 50 feet below. Beyond the river is the Pittsburgh downtown skyline and the Convention Center. Last night there was a massive fireworks show from the Rachel Carson Bridge (what I call "my" bridge), and I only had to walk onto my deck to enjoy it.</span><br />
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<span style="font-size: large;">Less than a mile down the trail is PNC Stadium where the Pirates play, and beyond that is Heinz Stadium where the Steelers play. Since my lungs are limiting my physical activity these days, my deck is a great location for people-watching, on and off the river, as people run, bike, kayak, boat, jet ski and walk their dogs. </span><br />
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<span style="font-size: large;">Speaking of my lungs, I've seen doctors in Pittsburgh and at Hopkins and I've had every test to determine what is going on. It seems that this may just be the result of cumulative scarring from the many surgeries, radiation plans and ablations over the past 9 years since I began my battle with metastatic disease. I suppose it's the price I pay for playing Whack-A-Mole. I'll see my pulmonologist next week and maybe he can think of a test I haven't had yet or a drug that can help me. The good news is that I don't have an infection, collapsed lung, blood clot, heart issues or an obstruction. There's also positive news on the research front. The National Cancer Institute just launched a huge project and both my hospital in Pittsburgh and Hopkins are participating facilities. My new oncologist is submitting my name and I'm hopeful that I qualify, in spite of all my other cancers. </span><br />
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<span style="font-size: large;">The goal is to identify various immunotherapy agents that will jump start the immune system to fight cancer on its own. You may have heard of some studies where researchers are using viruses such as measles, polio, even HIV, to accomplish this. There has been enough success with some cancers, that researchers are starting to think that cancer will no longer be identified by the body part where it begins. It will be identified by the genetic mutation(s) that cause a given cancer. The first phase of the <a href="http://www.nih.gov/news/health/jun2015/nci-01.htm" target="_blank">MATCH</a> program is to genetically test a person's tumors for mutations. Then the patient is matched with the immunotherapy agent -- which is not chemotherapy -- that will stimulate the immune system to respond and fight the cancer. If I qualify, I may be in a trial with all sorts of non-ACC cancer patients. The common denominator will be the genetic mutation, not the "type" or initial location of the cancer. The key to getting accepted into the one of the studies is having a mutation for which there is an agent that is currently being tested. Now that I have a new immune system, courtesy of my donor, let's see what it can do!</span><br />
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<span style="font-size: large;">The great thing about this project is that 2,400 facilities are involved, and patients will no longer have to travel several times a month to the trial city to get their medicine. And since drug costs are covered by the trials, the financial hit that people take is substantially reduced.</span><br />
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<span style="font-size: large;">My goal is to keep breathing long enough to take advantage of all this new science! I am impressed and relieved at the care that I've received so far in Pittsburgh. The doctors here actually read my cover letters and my 4 page Medical Summary, which is a commitment right off the bat. Generally speaking, people here are extremely nice. Maybe it's because of all the social and community events going on all the time. July brought <a href="http://www.picklesburgh.com/" target="_blank">Picklesburgh</a> to my bridge, complete with live bands. Maybe it's the crazy food. They serve French Fries on salads, sandwiches and even pizza! </span><br />
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<span style="font-size: large;">I can tell by the foot traffic on the trail that there's a Pirates game tonight. I have to say that this is a big improvement over my New Jersey neighborhood in the corner pocket of Maplewood, Newark and Irvington. And having Mary close by is like having a best friend, caregiver and personal assistant all in one thoughtful person. I never could have settled myself in without Mary's help. And on the New Jersey side of the move, I owe a lot to Jim, Laura and all those who helped me downsize, pack, drive through Pennsylvania and reinvent my material self. I threw away or donated at least 2/3 of my belongings, and this continued as I unpacked in Pittsburgh. If you ever want to leave a smaller footprint on the world, or just feel productive, call for a donation pick up. It's a win-win for everyone. </span><br />
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<span style="font-size: large;">I hope everyone had a great summer. Thanks so much to everyone who remembered my birthday. It was so moving to know that I haven't been forgotten. Here's to a new season of changes and opportunities. I promise to do a better job of keeping you updated.</span><br />
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<span style="font-size: large;">Kathy</span><br />
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<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com2tag:blogger.com,1999:blog-9193739754926367725.post-8113815716524375522015-03-22T20:17:00.001-04:002015-03-22T20:17:47.538-04:00Changing Times<span style="font-size: large;">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. </span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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 <i>Grey's Anatomy</i> 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.</span><br />
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<span style="font-size: large;">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!</span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">Because of the timing of my move, I will not be able to attend the Adenoid Cystic Carcinoma Research Foundation (<a href="http://www.accrf.org/" target="_blank">ACCRF</a>) 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: <a href="http://www.accrf.org/">www.accrf.org</a>. </span><br />
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<span style="font-size: large;">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!</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy</span><br />
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<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com3tag:blogger.com,1999:blog-9193739754926367725.post-33854222746697015162015-02-15T18:19:00.001-05:002015-02-16T15:10:48.935-05:00Some steps forward, some steps back?<span style="font-size: large;">The phrase "___ steps forward, ___ steps back" changes for me nearly on a monthly basis. Last month, with the discovery of breast cancer, I would have said "one giant step back." But the surgery went well, I was in the hospital only one night, and the pathology results showed that the margins were clear with no sign of lymph node invasion. </span><br />
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<span style="font-size: large;">For those of you who speak Breast Cancer, I was triple negative for hormone receptors, meaning that chemotherapy would not give me a leg up on long term survival. With radiation off the table, I don't need any additional treatment. In my book, this is the best outcome I could have hoped for. As I told my ACC friends, one less boob, one less cancer. A few steps forward. </span><br />
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<span style="font-size: large;">Time to turn back to <a href="http://www.accrf.org/" target="_blank">ACC</a> and the ongoing game of whack-a mole. I had a PET/CT here in NJ as part of my pre-op testing, and sent the scans to Dr.s <a href="http://www.hopkinsmedicine.org/profiles/results/directory/profile/0017308/kelvin-hong?CLEARPAGECACHE=false&appRedirRef=https%3A%2F%2Fwww%2Egoogle%2Ecom%2F#" target="_blank">Hong</a> and <a href="http://www.hopkinsmedicine.org/profiles/results/directory/profile/3260462/russell-hales" target="_blank">Hales</a> at Hopkins for their review. There were some wacky findings in wacky places, making it hard to come up with a clear plan of treatment. We decided that I should come to Hopkins for consults and physical examinations of these wacky places. </span><br />
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<span style="font-size: large;">Both doctors are "happy" with the overall state of my lungs right now. But their definition of "happy" is not the same as mine. The "multiple bilateral pleural nodules" numbering anywhere between 8 and 20, depending on the accuracy of the scan, are either stable or growing slowly. This means that treating them with <a href="http://www.radiologyinfo.org/en/info.cfm?pg=rfalung" target="_blank">RFA</a>, <a href="http://www.radiologyinfo.org/en/info.cfm?pg=cryo" target="_blank">cryoablation</a> or radiation is not needed right now. So is this a step forward or a step back? I'm not sure where to put my foot. "Just because a nodule might be big enough to treat doesn't mean we need to treat it now." This goes completely against my OCD if-you-can-see-it-kill-it mentality. The truth is, these nodules need to be monitored over time to make sure some aren't inflammation from prior treatment. Also, I need time to rebuild my stamina between assaults, such as an out-of-nowhere mastectomy.</span><br />
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<span style="font-size: large;">In the meantime, an area of cancer revealed itself in an area behind my left kidney and under my diaphragm, called the <a href="http://pubs.rsna.org/doi/pdf/10.1148/rg.285075187" target="_blank">retrocrural</a> space. Apparently, this is soft tissue that holds the organs in the abdominal area together. Seriously? I have more cancer just randomly hanging out in the neighborhood of my diaphragm? Because I have fairly serious scoliosis, it's hard to get a fix as to the boundaries of this thing. Some of the area that is not "hot" on the scan could be muscle that is twisting around my spine to compensate for the scoliosis. Because of this, we decided that Dr. Hong would cryoablate the smaller, more defined part that is clearly cancer, and wait to see how the rest of the area responds over time. If necessary, Dr. Hales can radiate whatever is left that we can definitely determine is cancer rather than muscle. Since ACC is a gland cancer, I asked if there are glands back in this area. Basically, there are glands all over, and scans just can't illuminate if this is in a gland or not. Metastatic disease sometimes shows up in lymph nodes in the retrocrural space. Bottom line: it's lighting up, it's growing faster than anything in my lungs, and it needs to be killed before it gets too big to ablate. Is this many steps back or a small step forward if it turns out to be a smaller, treatable area? </span><br />
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<span style="font-size: large;">And if this isn't enough, I noticed a very sore area several months ago over my right kidney. Eventually, a small bump appeared that is super duper sore. This is the classic pattern of ACC if it's close enough to the surface to feel. My radar went off because this is the place where I had a cryoablation for a kidney tumor two years ago. When I showed the lump to Dr. Hales and Dr. Hong, they were perplexed. It's exactly over the spot of the 2013 cryoablation. It's hard to see on the scans, but it's there. Sometimes there is a very small risk of cancer cells escaping when a biopsy is done or with a procedure that uses a needle to pierce a tumor. It's called seeding.</span><br />
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<span style="font-size: large;">This is a controversial topic in research circles. Biopsies are a standard part of diagnostic medicine and the benefits far outweigh the risks. But it happens every so often. Because it's so unusual, Dr. Hong was reluctant to conclude that this lump is the result of seeding. "How many ablations have you had and you've never had seeding?" he asked me. "True, I've had 10 ablations, but they killed 25+ tumors. If one tumor seeded, I wouldn't be shocked. Plus, the kidney tumor was 5 cm. and took 4 needles to ablate." </span><span style="font-size: large;">There is no data on the rare occurrence of seeding on a rare disease like ACC, so we can't draw any conclusions.</span><span style="font-size: large;"> </span><span style="font-size: large;">Maybe it's just a random tumor in random tissue, like the mystery cancer near the left side of my diaphragm. Who the hell knows? </span><br />
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<span style="font-size: large;">The question now is how to treat it. Since this lump is so close to the surface, both RFA and cryoablation are too dangerous (several steps back). So, Dr. Hong passed the ball to Dr. Hales and I'll be having a one shot dose of radiation to kill this wayward tumor using electrons rather than the usual photons, which is somehow safer. Some steps forward, as long as it works.</span><br />
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<span style="font-size: large;">We couldn't have come up with a plan for all this without me going to Baltimore on Friday to talk it out between the three of us. It was pretty instructive to bounce theories off both doctors and talk about the pros and cons of each option as we went through the scans from head to thigh. I'll be having the cryoablation to the weird space near my diaphragm on February 27th. The one shot dose of radiation over my right kidney will be around March 9th.</span><br />
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<span style="font-size: large;">Less than 3 weeks since the mastectomy, I'm pretty sore all over and wiped out. I slept 13.5 hours yesterday and 11 last night. As I hunker down till this freezing weather passes, it's hard to say whether or not I'm moving forward, backward or just treading water. I just know that I'm happy to have a plan in place, that the breast cancer is under control and that I will still be able to move to Pittsburgh in the spring. The most important thing right now is knowing that I'm in good hands -- from my medical team to my local and long distance friends to Mary, who is acting as my apartment scout in Pittsburgh. Rather than looking from month to month, it seems I'm making progress from year to year. The key is to face forward and hang on tight. My feet will land where they are meant to land, even if there's a step back every now and then.</span><br />
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<span style="font-size: large;">Kathy </span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-58126987359343571152015-01-10T20:57:00.000-05:002015-01-10T20:57:23.332-05:00This is f*cked up.<span style="font-size: large;">No wonder I'm not really into the Holidays. For the past several years they've coincided with medical nightmares. I thought that this year would be different. Oh, so close. </span><br />
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<span style="font-size: large;">It was time for my yearly breast ultrasound, which I stagger with a yearly mammogram on a 6 month rolling basis. I scheduled this for last Thursday, just before my monthly visit with <a href="http://www.englewoodhospital.com/about_news_press_09_2.asp" target="_blank">Dr. Forte</a> -- the greatest oncologist on the planet. I could tell by watching the technician's face that it was going to be a bad day. A mass was found in my left breast, the same breast where ACC was found in 2000. After a painful fine needle aspiration and an even more painful core needle biopsy, the radiologist confirmed that it was indeed cancer. My stomach dropped. Again. I've never known Adenoid Cystic Carcinoma of the Breast (ACCB) to reoccur in the original site after treatment. My head was spinning.</span><br />
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<span style="font-size: large;">By the time I got to my appointment with Dr. Forte, the slides had been read and he told me that this is a completely different cancer from ACC. A totally new cancer diagnosis! We both sat there for a minute, speechless. All I could say was, "This is f*cked up." I'm pretty sure I said that several times during that appointment. He said that the pathologist thinks it's just run-of-the-mill invasive ductal carcinoma, <a href="http://www.hopkinsmedicine.org/avon_foundation_breast_center/breast_cancers_other_conditions/invasive_ductal_carcinoma.html" target="_blank">IDC</a>. Up to 80% of all breast cancers are IDC. Although it's a very common cancer, and I don't have to seek out specialists this time, it's a whole new ballgame. It's a whole new everything. Starting over. </span><br />
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<span style="font-size: large;">Driving home that night I felt like my body has been turned into one big medical torture chamber. I turned up the radio as my long time friend read my mind.</span><br />
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<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;">
<span style="font-family: inherit; font-size: large;">Hell's brewing, dark sun's on the rise</span><br />
<span style="font-family: inherit; font-size: large;">This storm will blow through, by and by</span><br />
<span style="font-family: inherit; font-size: large;">House is on fire, vipers in the grass</span><br />
<span style="font-family: inherit; font-size: large;">Little revenge and this too shall pass</span></div>
<div class="verse" style="box-sizing: border-box; font-family: proxnov-reg, arial, sans-serif; line-height: 16px;">
<span style="font-family: inherit; font-size: large;">This too shall pass, yeah I'm gonna pray</span><br />
<span style="font-family: inherit; font-size: large;">Right now, all I got's this lonesome day</span></div>
<span style="font-family: inherit; font-size: large;"> Bruce Springsteen, <i>Lonesome Day</i></span></blockquote>
<span style="font-size: large;">The details of the plan have yet to be determined. But here's what I know so far: I'm in very good hands at Englewood Hospital and Medical Center. Dr. Forte has treated this kind of cancer hundreds of times. He has always been invested in my care and was very upset with this development. He's practically a family member. He said he was probably going to go home and cry. I was oddly comforted by that. Dr. V. Merle McIntosh is the Chief of Breast Surgery and is the best at what she does. I will meet with her on Thursday to schedule a date for surgery. She said that, with my medical history, we need to be super careful not to be too aggressive. The driving questions will be whether we can get clean margins and if the cancer has already spread to any lymph nodes. This will determine the stage and where to go from there. </span><br />
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<span style="font-size: large;">Dr. McIntosh told me to bring my "folder of test results." I'm very OCD when is comes to keeping organized. I have four levels of medical records: 1. My four page Medical Summary and List of Medications for my purse; 2. My portable 5x7 notebook with all my lists and blank paper for taking notes at appointments; 3. My files for each doctor; and 4. the Big Kahuna -- my 4" binder of all my test results, divided by types of tests. I'll have to use my backpack on wheels on Thursday. The Big Kahuna is just too heavy.</span><br />
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<span style="font-size: large;">So far, 2015 kind of sucks. From all I learned about breast cancer during my first six years of survivorship -- when I erroneously thought that ACC of the breast was a type of breast cancer -- this shouldn't be as steep a roller coaster as ACC has been. Hopefully, this won't set my plans for moving back too far. I need a change of scenery, that's for sure. </span><br />
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<span style="font-size: large;">Armed with my Kindle, Apple iTV, Amazon Fire Stick, Fresh Direct grocery delivery and take-out menus, Sadie and I will settle into an all-too-familiar routine. It's all in a day's work.</span><br />
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<span style="font-size: large;">Kathy</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com1tag:blogger.com,1999:blog-9193739754926367725.post-79647668911619613852014-11-07T20:15:00.000-05:002014-11-07T20:16:19.522-05:00Room 207<span style="font-size: large;">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?" </span><br />
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<span style="font-size: large;">All went well with the radiation treatments. Since the <a href="http://www.radiologyinfo.org/en/info.cfm?pg=cryo" target="_blank">cryoablation</a> 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 (<a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002286/" target="_blank">GVHD</a>) 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!</span><br />
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<span style="font-size: large;">I was able to keep myself busy while in Baltimore. I used my appointments with <a href="http://www.hopkinsmedicine.org/profiles/results/directory/profile/3260462/russell-hales?firstLetter=H&CLEARPAGECACHE=false&appRedirRef=http%3A%2F%2Fararecancerjourney%2Eblogspot%2Ecom%2F2013%2F02%2Fwrecking-ball%2Ehtml" target="_blank">Dr. Hales</a> to ask about current trends in radiation research, I spoke with several <a href="http://www.accrf.org/" target="_blank">Adenoid Cystic Carcinoma</a> 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 <a href="http://www.hopkinsmedicine.org/profiles/results/directory/profile/0017308/kelvin-hong?CLEARPAGECACHE=false&appRedirRef=https%3A%2F%2Fwww%2Egoogle%2Ecom%2F" target="_blank">Dr. Hong</a> 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 <a href="http://www.cancer.gov/cancertopics/pdq/treatment/adultAML/Patient/page1" target="_blank">Acute Myeloid Leukemia</a> survivor.</span><br />
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<span style="font-size: large;">Adding to this community of survivorship, I stayed at <a href="http://www.cancer.org/treatment/supportprogramsservices/hopelodge/baltimore/baltimore-staying-with-us" target="_blank">Hope Lodge</a>, 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. </span><br />
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<span style="font-size: large;">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. </span><span style="font-size: large;">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.</span><span style="font-size: large;"> </span><span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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:</span><br />
<blockquote class="tr_bq">
<span style="font-family: inherit; font-size: large;">Well I will provide for you<br />And I'll stand by your side<br />You'll need a good companion now<br />For this part of your ride<br />Leave behind your sorrows<br />Let this day be the last<br />Tomorrow there'll be sunshine<br />And all this darkness past </span><span style="font-family: inherit;">(Bruce Springsteen, <i>Land of Hope and Dreams</i>)</span></blockquote>
<span style="font-size: large;">As 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. </span><br />
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<span style="font-size: large;">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. </span><br />
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<span style="font-size: large;">Kathy</span><br />
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<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com2tag:blogger.com,1999:blog-9193739754926367725.post-10297825935080616912014-10-12T17:00:00.001-04:002014-10-12T17:01:15.803-04:00Sports, donuts and a battle against a Cone of Cancer<br />
<span style="font-size: large;">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 <a href="http://www.radiologyinfo.org/en/info.cfm?pg=cryo" target="_blank">cryoablation</a> to a large kidney tumor. See <a href="http://ararecancerjourney.blogspot.com/2013/02/wrecking-ball.html" target="_blank">2/25/13</a> 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 <a href="http://www.cancer.org/treatment/supportprogramsservices/hopelodge/baltimore/baltimore-staying-with-us" target="_blank">Hope Lodge</a> 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.</span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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 (<a href="http://www.nlm.nih.gov/medlineplus/pleuraldisorders.html" target="_blank">pleura</a>) 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. </span><br />
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<span style="font-size: large;">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. </span><br />
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<span style="font-size: large;">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 <a href="http://www.versahd.com/" target="_blank">Versa HD</a> (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 <b>and</b> 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.</span><br />
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<span style="font-size: large;">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. </span><br />
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<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">Kathy</span><br />
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<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com1tag:blogger.com,1999:blog-9193739754926367725.post-51854328586149255112014-09-18T21:59:00.000-04:002014-09-18T22:00:23.125-04:0010th Ablation and No Free T-Shirt!<span style="font-size: large;">One would think that with my 10th ablation I would get something -- a free T-shirt, car wash, crock pot, something. But no. Just one less tumor, trying to take over my beaten up left lung. That's actually quite a lot. I did get a free overnight stay in a private room on the 11th floor of the Zayed building overlooking the Baltimore City Juvenile Justice Center. Hey, it was a nice view. But before I get to that, I have to again apologize for another rerun of previous posts you may have received if you follow this blog by email. I enlarged the font for several past posts for us "seasoned readers" who can't see crap anymore, and blammo. Blogspot spit out a couple of updates as if they were written yesterday. Not so. Sorry for the confusion.</span><br />
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<span style="font-size: large;">I had a pretty busy week, starting on Wednesday, September 10th. I took the train to Pittsburgh for a working vacation. On Thursday, Mary and I drove around the city looking at potential apartments and neighborhoods for my relocation next Spring. That was very productive. On Friday, I went for a consult with a potential local oncologist whom I hoped would meet my rather rigorous standards. He didn't; it was a big waste of time that could have been avoided had he actually read the letter I wrote him about my needs. The day was redeemed when we spent way too long at the T-Mobile store upgrading my phone. I'm pretty happy with my new toy, thanks to Sarah's savvy assistance. Everyone needs a 16 year old for such life altering events.</span><br />
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<span style="font-size: large;">Saturday was an Adenoid Cystic Carcinoma Organization International (<a href="http://www.accoi.org/" target="_blank">ACCOI</a>) patient meeting, where five ACC survivors and their family members met over lunch. It was an amazing group of incredible fighters. We shared our very diverse stories, treatments, doctor recommendations and tips for navigating the treacherous waters of an unpredictable and brutal cancer. There was humor, hope and priceless information, not to mention newly made friendships.</span><br />
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<span style="font-size: large;">On Sunday, I took the train to Baltimore and met up with an extraordinary ACC survivor, Michelle, whose feisty strength and grace was contagious and humbling. I reported to Hopkins at six a.m. Monday morning for a <a href="http://www.radiologyinfo.org/en/info.cfm?pg=cryo" target="_blank">cryoablation</a> (using freezing gas instead of radioactive heat, as with <a href="http://www.radiologyinfo.org/en/info.cfm?pg=rfalung" target="_blank">RFA</a>) on a left tumor in my pleura (the lining of my lung). Everything was going swimmingly, as I shared my preferences for anesthesia drugs and settled onto the familiar OR table. The next thing I remember is waking up very nauseous, demanding a vomit bin and a hit of dissolvable Zofran. Then there's a gap. I woke up again, feeling much better and was told that <a href="http://www.hopkinsmedicine.org/profiles/results/directory/profile/0017308/kelvin-hong?CLEARPAGECACHE=false&appRedirRef=https%3A%2F%2Fwww%2Egoogle%2Ecom%2F" target="_blank">Dr. Hong</a> was going to admit me due to a complication that occurred in the OR and because I "looked awful." I forgave him and asked about the complication. Apparently, I bled into my lung, which can be hard to control, serious and just not good. I went into a coughing fit, under sedation, and coughed up most of the blood. I assume I wasn't getting zapped at that particular moment. Whatever I swallowed came up during the gap in my memory while in recovery. The only evidence I had of any of this was my already chronically sore ribs were very painful from coughing. How I avoided a pneumothorax (collapsed lung) during this drama is beyond me. Thank God I was at Hopkins, is all I have to say.</span></div>
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<span style="font-size: large;">Bleeding is an extremely low risk for these procedures. They happen so rarely, patients aren't even quoted a percentage when being told of the risks. Truth be told, I may have brought this on myself. You know when the pre-op nurses call to tell you to stop taking any NSAID or asprin products 7 days prior to surgery to avoid bleeding? Well, I kind of forgot about that until 2 days prior to surgery. Note to self!!</span></div>
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<span style="font-size: large;">The ablation itself was successful, notwithstanding the added adventure. I was discharged the next morning, took the shuttle to my hotel, packed my stuff and caught the 2:46 train to Newark. Pretty productive week, right? Because the pleura is a hotbed of nerves, avoiding nerve damage is nearly impossible. I feel pretty sore and since the ablation site is just above my heart, I will be tucking my seat belt under my left arm for a while. And, of course, my left rib cage is very unhappy. Could be worse, lots worse.</span></div>
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<span style="font-size: large;">So what's next? My right lung seems to be behaving. My left lung is the problem child. Near the site of this ablation, cancer is causing a thickening of the pleural space such that an ablation isn't the best option for treatment. Radiation would be able to treat the area all at once. So I'm waiting for <a href="http://www.hopkinsmedicine.org/profiles/results/directory/profile/3260462/russell-hales?CLEARPAGECACHE=false&appRedirRef=https%3A%2F%2Fwww%2Egoogle%2Ecom%2F" target="_blank">Dr. Hales</a> to call with a treatment plan. Assuming Hope Lodge has room for me, I'll be spending some time in Baltimore, probably next month. Aside from the obvious frustration that another battle is in sight, I'm just hoping that the net nerve pain at the end of it all is not worse than it already is. Now that I don't work anymore, I have way too much to do with ACCOI and planning my move to Pittsburgh. </span></div>
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<span style="font-size: large;">Keeping my eye on the big picture, today is yet another milestone for me. I was first diagnosed with ACC 14 years ago today, about a year after moving to New Jersey. Just like ablations, there is no prize for surviving another year. The reward is staying alive to fight with others for knowledge and a possible way to turn this cancer off. In between the battles, there are fun times to be had, friendships to forge, and bridges to cross. </span><span style="font-size: large;">It's not like I need another T-shirt anyway. </span></div>
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<span style="font-size: large;">Kathy</span></div>
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<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span></div>
<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F1.bp.blogspot.com%2F-Iw6rj5bIU28%2FVBtdJYHG86I%2FAAAAAAAAAHg%2F3-ptIr6qPg0%2Fs1600%2FACCOI%252BPittsburgh%252B9-13-14%252Bsurvivors.jpg&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ9lXY__V_SnYPan7HJWAd2UMaUSdwYECyNswC7SKgsD8avS4AE1o03VP82i6qmAR3GaOcdGOJ0WrZjnguwvoVHMLutzjXKVqPai1WKKEGIs0VcpZB5ECl8cNfzcl1ADe7O7gB877GA0p4/s1600/ACCOI+Pittsburgh+9-13-14+survivors.jpg" -->Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com1tag:blogger.com,1999:blog-9193739754926367725.post-39586707453586842252014-08-03T16:26:00.001-04:002014-10-12T16:33:53.893-04:00More New Beginnings<span style="font-size: large;">On November 17, 2010, when my new bone marrow came to live with me, one of my transplant doctors wished me, "New beginnings!" (See December 5, 2010 <a href="http://ararecancerjourney.blogspot.com/2010/12/new-beginnings.html" target="_blank">post</a>). New beginnings it certainly was -- new chances, new opportunities, a new future. Now that it's been almost 5 years since my <a href="http://www.lls.org/#/diseaseinformation/leukemia/acutemyeloidleukemia/" target="_blank">Acute Myeloid Leukemia</a> adventure began, my attention for the last few years returned to my 14 year battle with metastatic <a href="http://www.accrf.org/" target="_blank">Adenoid Cystic Carcinoma</a> (ACC).</span><br />
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<span style="font-size: large;">The radiofrequency ablation (<a href="http://www.cancerablation.com/" target="_blank">RFA</a>) to a left lung tumor on June 2, 2014 was an easy one. Two days off from work and I could barely tell anything had been done at all. As long as ablations take place in the lung tissue, away from any vital structures like major airways, the chest wall, the heart, etc., this whac-a-mole approach to killing metastatic tumors is pretty easy to manage. But when cancer cells creep into the lining of the lungs, called the <a href="http://www.nlm.nih.gov/medlineplus/pleuraldisorders.html" target="_blank">pleura</a>, that's when things get complicated.</span><br />
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<span style="font-size: large;">The pleura is like a slip-and-slide, providing lubrication between the lungs and the ribs to allow for expansion within the chest. Once cancer cells start slipping and sliding in the pleura, they can take up residence anywhere, and nodules/spots/tumors are very hard to detect and contain. Another problem is that the pleura contains lots and lots of nerves, which is why it's safer to kill tumors there by freezing them (<a href="http://www.radiologyinfo.org/en/info.cfm?pg=cryo" target="_blank">cryoablation</a>) rather than cooking them with RFA. Even with cryoablation, it is difficult to avoid nerve damage to the really big nerves that run all along the spine (<a href="http://en.wikipedia.org/wiki/Intercostal_nerves" target="_blank">intercostal nerves</a>). A third problem is that ACC travels along nerves, making tumors in the pleura a really big pain, literally.</span><br />
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<span style="font-size: large;">My current situation is that all the nodules/spots/tumors that now show up on my CT scans are in the pleura of both lungs. We don't call them tumors until we can see over time that they're growing, but we're at that point now with some of the spots we've been watching, so it's time for a couple more trips to Baltimore. This may sound like terrible news, but it's actually nothing all that new. The new issue is that instead of having the simple RFAs that I've had in the past, I now need cryoablations that are likely to result in a 2-6 month recovery period for each one.</span><br />
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<span style="font-size: large;">The plan is to first have 2 tumors in the left lung cryoablated (killed with freezing gas); this is tentatively scheduled for September 15th. When I have recovered from that, I'll have 1 tumor in the right lung cryoablated. As long as the remaining lung spots stay put and don't grow, that should do it for awhile. Thankfully, I have a slow growing form of this very slow growing cancer. I had a cryoablation in my right pleural last October, and it cause nerve pain for a few months. This time, it will be on my left lung, where I already have chronic nerve pain from the last lung surgery 2 years ago. This will be my 10th ablation to tumors 24 and 25, so as most of you know, this is not my first rodeo. (I actively look for chances to say that!) Looking at the big picture, things could be worse. A lot worse.</span><br />
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<span style="font-size: large;">The real news here is a different kind of new beginning: I finally had to accept the fact that I'm no longer able to manage this illness full time while working full time. With the ablations coming up, disability is a given. The fractured wrist injury in February really set me back and triggered several long term pain syndromes that I thought were somewhat under control. Now that they're back, I have no choice but to focus on getting as strong as I can for what lies ahead.</span><br />
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<span style="font-size: large;">I've worked in the Litigation Department at <a href="http://www.lowenstein.com/" target="_blank">Lowenstein Sandler</a> for 15 years. The firm has been the closest thing to a family I've had my entire adult life. It's hard to process the fact that I'm leaving to go out on disability again. I don't think anyone can find a more understanding, supportive, go-the-extra-mile, generous company, anywhere. I'll have to put off my thoughts about this for another post, when it becomes real.</span><br />
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<span style="font-size: large;">Several people have asked me if I'll be bored or what I will spend my time doing. Well, since disability is not retirement, and pain is never boring, I'll be spending quite a bit of energy recovering from cancer procedures and coping with their side effects. But I refuse to throw pity parties or become a daytime TV junkie -- well, maybe a little bit. As I'm able, I will build my health as much as possible and contribute to patient advocacy projects with the Adenoid Cystic Carcinoma Organization International (<a href="http://www.accoi.org/" target="_blank">ACCOI</a>). I just returned from an ACCOI event for survivors in the heart of California's wine country. You didn't know that cancer can bring such good times, did you? I learned that I have some things to contribute and that my experiences can help others who are battling this really monstrous disease. More on that in another post too.</span><br />
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<span style="font-size: large;">My beautiful cousin, Niki, gave me an Easter lily a few years ago, which I planted outside my condo. When the flowers fell off, the landscapers for my condo association cut it down. I mourned in anger and eventually forgot about it. About a month ago, I discovered that the lily had grown back and was in full bloom, bent and worn down from rough times, but still alive and thriving. I thought to myself, "That lily is kind of like me. Bent and worn down, but still here and determined to survive the rough times ahead." This morning I realized that the landscapers came and cut down the lily again. "No worries, it will be back," I thought. This time I didn't get angry or sad. I just smiled to myself. The spirit of life has a way of breaking through.</span><br />
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<span style="font-size: large;">Kathy</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-1588914142962566022014-06-15T18:34:00.000-04:002014-09-17T19:10:34.519-04:00Monkey Mind<span style="font-size: large;">Have you ever tried really hard to relax? How about concentrating on reaching a meditative state? It's impossible by definition. I've tried sending everything to my mental trash folder, and it never seems to work for me. I have terrible Monkey Mind. </span><br />
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<span style="font-size: large;">Buddha described the human mind as being filled with drunken monkeys, jumping around, screeching, chattering, carrying on endlessly. We all have monkey minds, Buddha said, with dozens of monkeys all clamoring for attention. Fear is an especially loud monkey, sounding the alarm incessantly, pointing out all the things we should be wary of and everything that could go wrong. (<a href="http://www.huffingtonpost.com/bj-gallagher/buddha-how-to-tame-your-m_b_945793.html" target="_blank">Huffington Post Blog, BJ Gallagher</a>)</span></blockquote>
<span style="font-size: large;">If only there was a drug for this affliction; I'd be the first in line. I went to Hopkins on June 2nd for a <a href="http://www.cancerablation.com/" target="_blank">Radiofrequency Ablation</a> (RFA) to an upper left lung tumor. The procedure went great. Easy peasy. <a href="http://www.hopkinsmedicine.org/vascular/staff/physicians/hong.html" target="_blank">Dr. Hong</a> was all smiles afterward and once my chest x-rays showed that all was well, I left with Karen the same day. I drove home the next day and worked from home the day after. </span><br />
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<span style="font-size: large;">I did notice that I had two little red marks at the site on my upper back, and thought, "Hmmm, one tumor, two needle marks? Oh, well." When I called for a copy of the operative report later that week, I was stunned at a something I read. It described the prep for the surgery, and then this: "At this time a 25% <a href="http://www.nlm.nih.gov/medlineplus/ency/article/000087.htm" target="_blank">pneumothorax</a> was identified on the left side," followed by a chest tube placement. Whaaa? I had a collapsed lung before the RFA even started? How long have I been walking around with that? The monkeys were going crazy. As I speed dialed Dr. Hong, I thought, "Um. Dr. Hong? Excuse me, but WTF? Did I walk in with this? Did you forget to mention something?" Of course I had to leave a message and wait with the monkeys till he called me back. "Oh no," he said. "If you had a 25% collapse, you would have known it." He then proceeded to advise me not to read the reports. To this I replied, "Dr. Hong, have you met me?" We both just laughed as my blood pressure receded. Yes, I had a small pneumothorax from having my lung pierced by the needle, but it resolved itself before I woke up so I never even knew about it. It was such a non-event, he never thought to mention it. Hence the two little marks -- one from the needle, the other from the tiny chest tube.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">In Cancer World, it's very hard to shake off Monkey Mind. We assume that every new symptom of anything is a sign of more cancer. A headache must be a brain tumor. A new age spot must be skin cancer. A chest cold means that lung metastasis has taken over. It's exhausting. The monkeys take up residence and refuse to leave. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">In mid May, during the busiest, most stressful time of my entire year at work, I got a call from my urologist. The stent that was placed between my bladder and kidney last year, part of a <span id="goog_1081087405"></span><a href="https://www.blogger.com/">cryoablation</a><span id="goog_1081087406"></span> procedure to kill a large tumor in my kidney, left lingering symptoms. My doctor called to tell me that he ran a <a href="http://www.webmd.com/cancer/fish-cancer-test" target="_blank">FISH</a> test and it came back positive. A FISH test is a marker for cancer. He wanted me to have an immediate procedure to see what was going on. The subtext of the call was, "You probably have bladder cancer." </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">There were three possibilities: 1. The FISH test was a false positive and I'm fine. Yeah, right. 2. Metastasis has spread to my bladder. 3. I have a new bladder cancer, caused by the tons of chemotherapy drugs and other toxic medicines I've poisoned my body with over the last 14 years. It was a very long two weeks and the monkeys were relentless. The answer was behind Door Number 1: The test was a false positive. No sign of cancer. Relief and surprise don't come close to describing how happy I was, or the beat down I gave those monkeys.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The problem is, Monkey Mind is a constant state of being unless we actively work to control it and keep it at bay. I'm having a hard time healing from the carpel tunnel release that was done when I fractured my wrist in February. This injury was pretty traumatic for my new immune system and it's working overtime to heal me. Unfortunately, it's also fighting me again, causing all kinds of pain issues to resurface. Is it any wonder that I self induced a sinus cold last week? Damn monkeys!</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I know that deep breathing exercises and meditation would make a huge difference, so I've started doing both. I hope to get back to doing gentle yoga again soon, which was something I enjoyed before I fell. Thankfully, I won't have to spend my summer making trips to Hopkins. There are two more ablations on the horizon. I'll go in early September for a cryoablation to kill two more tumors in my left lung, and after that we'll schedule another one to kill a right lung tumor. Next month I'm going to Sonoma Valley in California for a meeting with other <a href="http://www.accrf.org/" target="_blank">ACC</a> patients, and I'll spend a couple of days visiting San Francisco. Meeting other survivors is enormously helpful when fighting a rare disease that no one has ever heard of. Having the meeting at a winery is even better!</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The first step to conquering Monkey Mind is to recognize the reason the monkeys are screeching. It's usually fear. Then we can use the tools we know we should be using -- meditation, prayer, etc. -- to escort them out the door. Monkeys are fascinating animals. They just don't belong in our heads. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Happy Father's Day to all fathers everywhere!</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy
</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-34195777512830311532014-04-12T19:25:00.000-04:002014-09-17T19:10:49.609-04:00No, this is not 2011<span style="font-size: large;">Did anyone else go back in time this morning? I was doing a little blog maintenance, and Blogspot re-published a post I wrote in June 2011. To all of you who subscribe to new posts, I apologize for the confusion. Knowing all that has happened since June 2011, that is not a time to which I would choose to return, that's for sure!</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I'll go back to Hopkins for another RFA to a lung tumor in June, and then I promised myself a vacation. Hope you are all enjoying better weather. Happy Holy Holidays, Spring Break and Chocolate Bunnies!</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy
</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-87269946518608467802014-03-22T19:35:00.000-04:002014-09-17T19:11:28.719-04:00We Take Care Of Our Own<span style="font-size: large;">Word has it another storm is on the way. Just when you think it's safe to leave your house and go to PT to rehab your busted wrist.... Although I'm bumbling through many of life's required tasks with my left hand, I'm still painfully slow (painful being the operative word). I had the giant pin removed from the hardware that was recently installed to rebuild my wrist, the hard cast is off, and I've started PT. My fingers are pretty useless and oh so painful, but I'm determined to work hard to resume a normal two-handed life soon.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Thanks to Mary, I made it up to Boston for the Adenoid Cystic Carcinoma Research Foundation (<a href="http://www.accrf.org/" target="_blank">ACCRF</a>) events. The trip was exhausting, but I'm so glad I was able to meet other patients, the founders and organizers of the Foundation and the volunteers of their sister organization, ACC Organization International (<a href="http://www.accoi.org/" target="_blank">ACCOI</a>). We shared stories, broke bread and learned about the latest research in the pipeline for a systemic treatment to stop this monster once and for all. Sound like an unrealistic reach? I might think so too. But with what we know about what causes and drives ACC, and with all the scientists who are now working on research models, there's a lot of hope.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Hope is powerful. So is having people with whom you can share that hope. Cancer's a lonely journey; all serious illnesses are. When it's a rare disease, the isolation can be severe. Meeting people who speak my language is like gaining an instant family. Or, as Bruce says,</span><br />
<blockquote class="tr_bq">
<span style="font-size: large;">Wherever this flag’s flown</span><br />
<span style="font-size: large;">We take care of our own.</span></blockquote>
<span style="font-size: large;">Again, to all of you who donated to the <a href="http://www.firstgiving.com/fundraiser/kathrynseeley/kathrynseeleysfundraisingpage" target="_blank">fundraiser</a>, my sincere thanks.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy
</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-39959107217298856822014-03-01T16:27:00.001-05:002014-09-17T19:12:24.976-04:00Continuing Education<span style="font-size: large;">After studying something for oh, say a decade or more, a person's knowledge should amount to a couple of letters after their name, even if it's not an education by choice. For example, Kathy Seeley, MPE, Master of Patient Education. February turned out to be an unexpected course in MPE. I'd give myself B- on the PET/CT at Hopkins, which in my case is an excellent grade. But I also had a crash course in orthopedics, furthering my continuing education.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Both Dr. Hong and Dr. Hales read my PET/CT images before the report was written and said that I have only one spot, still fairly small, that they think should be treated with RFA in the next few months. All other spots are either stable or to small to measure, and all 2013 treatments were successful. As usual, the report reads a little more serious because they have to report every little blip they see. It wasn't the A that I was hoping for, and I'm not sure my theory of <a href="http://www.ararecancerjourney.blogspot.com/2013/09/n1-when-science-meets-faith.html" target="_blank">N=1</a> (my transplanted immune system is fighting both ACC and AML) holds up. But that was a long shot anyway, and it was a pretty good report card overall.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I was about to blog about these results when, on Wednesday, February 12, the day before our biggest snow and ice storm of the 10+ this winter, I slipped on ice in front of my door and came crashing down on my right wrist. I laid on the ice, unable to move, for 30 minutes waiting for the EMTs, and this began a week of three ER departments, five ambulance rides, and uncontrolled pain like I've never experienced before, and I'm no stranger to pain. When three orthopedic surgeons used words like "shattered" and "multiple fractures," the pain episodes made sense. I had to wait a week for the swelling to go down before a surgeon could insert a titanium plate into my wrist and screw my bones to it. That was 1.5 weeks ago. I still have a fair amount of pain, but nothing like before the surgery. I'm hoping my surgeon will clear me for the short trip to Boston next weekend for the events I wrote about in my last post. Thankfully, Mary's coming with me so she can drive and help me with daily tasks that we all take for granted when we have two hands. Without her, I wouldn't be able to manage it. I know a hard cast is in my future but I don't know much more than that till Monday (barring another traffic stopping snow storm).</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I'm lucky that this is all temporary and I will eventually recover. The people I hope to meet in Boston next weekend don't all have this assurance. The short term loss of a limb is nothing compared to the loss of one or more facial features, or the ability to eat, speak or smile. Please visit my <a href="http://www.firstgiving.com/fundraiser/kathrynseeley/kathrynseeleysfundraisingpage" target="_blank">my fundraising page</a> and consider making a donation to the Adenoid Cystic Carcinoma Research Foundation, <a href="http://www.accrf.org/" target="_blank">ACCRF.</a> If you have already donated, thank you so very much. People with ACC have earned their MPE at very high costs. We all really appreciate your support. For those of you who came to my aid these past few weeks, angels await you. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-72315743099143139692014-01-25T19:19:00.001-05:002014-09-17T19:13:06.367-04:00High Hopes<span style="font-size: large;">Happy New Year, everyone! I hope that you all started 2014 with laughter, gratitude and health. I have high hopes for this year and beyond. Last year was bittersweet. A year ago last month I learned that so much cancer had emerged, my doctors at Johns Hopkins had a hard time determining which organ to treat first. After a tough January/February in Baltimore and more radiation in late June, I was pretty sure my luck was running out. Then, by late summer, the tumors in my lungs were inexplicably stabilizing, shrinking, or falling off the radar all together.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I find it wonderfully helpful that Bruce Springsteen unknowingly follows my ups and downs with the release of his albums. <i>Wrecking Ball</i> was timed perfectly with the wrecking ball that hit me last winter (see my <a href="http://www.ararecancerjourney.blogspot.com/2013/02/wrecking-ball.html" target="_blank">Feb. 25, 2013 post</a>). This month Bruce released <i>High Hopes</i>, just as I try to manage my scan-xiety over the next set of scans at Johns Hopkins on February 7th.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">My high hopes for 2014 are not just for me, but for all my Adenoid Cystic Carcinoma (ACC) brothers and sisters. As many of you know, ACC is a slow growing, persistent cancer that can either go to sleep, hide or grow aggressively at any time. For those of us who have experienced all three, we live life in the present, from one scan to the next. I'm cautiously optimistic that my unique status as a bone marrow transplant recipient will prove my theory as to why things turned around for me (see my <a href="http://www.ararecancerjourney.blogspot.com/2013/09/n1-when-science-meets-faith.html" target="_blank">Sept. 14, 2013 post, N=1</a>). But for other ACC patients, this is not an option.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Since ACC is so rare, it is vastly underfunded. The fastest, most effective way to stop this unrelenting disease (people commonly fight for decades) is money. Well, it just so happens that the Adenoid Cystic Carcinoma Research Foundation, <a href="http://www.accrf.org/" target="_blank">ACCRF</a> is holding its annual fundraiser in the Boston area on March 8, 2014. ACCRF is making incredible strides toward finding a cure. They are working with the NIH, building scientific research boards and establishing global research agendas. The event will be one for the record books and I'm really looking forward to it. Please visit <a href="http://www.firstgiving.com/fundraiser/kathrynseeley/kathrynseeleysfundraisingpage" target="_blank">my fundraising page</a> to learn more about the event and make a donation. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Last year I joined an online discussion site through the <a _fcksavedurl="http://www.accoi.org/" href="http://www.accoi.org/">Adenoid Cystic Carcinoma Organization International</a>
(ACCOI) -- sister organization of ACCRF -- an all volunteer group that sponsors a global community of ACC patients
who share information and support. Before joining this group, I found
very few ACCers on my own. I didn't really know about the experiences
of having ACC first appear in the head/neck, where cancer can start in
any gland in the face, neck or throat and travel from there.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Some of
the people I've met online have gone through, or are currently managing,
unthinkable obstacles. (Since my cancer started in the breast, I was
spared a lot.) I've never seen a group of people hold each
other up, push each other forward, and offer advice and experience that
cannot be found anywhere in the medical community. From Malaysia to
Switzerland, China, Australia and all over the US,
these people are wise beyond words, inspiring and unthinkably brave. Prior to the fundraiser
there will be a patient meeting, where everyone can meet each other and learn of the latest research. After 13 years, I will finally attend a meeting with others who understand the issues I've faced battling a cancer that few doctors have even heard of. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I'm very hopeful about this year. We're getting close to finding a cure, I can feel it. The ACCRF is making incredible alliances with researchers all over the world and I'm excited to see what comes of the exploding world of genomics in medicine. I was not so hopeful this time last year. I was nervous about living alone, upcoming treatments with unknown side effects, and my failing attempts to train my cat to be my personal assistant. That last one hasn't changed, but today at least, I'm in a good place. Signing up for satellite radio with the 24 hour Springsteen channel -- E Street Radio -- was also good for my psyche.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Looking forward to all good things.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy </span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-23910974492715251892013-11-02T20:37:00.003-04:002014-09-17T19:13:34.330-04:00Milestones<span style="font-size: large;"><br /></span>
<span style="font-size: large;">As I watch the leaves turn bright autumn colors, I can't believe it's November. This time of year marks a series of milestones for me. Since 2000, it seems that September and October are the biggest months for cancer diagnoses, relapses and other really bad news. In the last year or so I went through a downward spiral involving my original diagnosis, Adenoid Cystic Carcinoma of the Breast (<a href="http://onlinelibrary.wiley.com/doi/10.1002/cncr.10455/pdf" target="_blank">ACCB</a>). A few weeks ago I went to Hopkins for a <a href="http://en.wikipedia.org/wiki/Cryoablation" target="_blank">cryoablation</a> on a growing metastatic lung tumor, which I spoke of in my last post. Cryoablation differs from <a href="http://www.cancerablation.com/" target="_blank">radiofrequency ablation</a> in that it uses gas to form a ball of ice that freezes the tumor rather than burning it. The procedure went great, but since the pleura is made up of lots of nerve endings, I have varying amounts of pain in my right shoulder, wrapping around to my chest. It's very similar to the pain I still have on my left side from the lung surgery in August 2012, so at least I'm balanced!</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Aside from this one tumor, I received unexpected good news in mid July: Somehow, several more tumors in the pleura slowed to a crawl, leaving me with a surprising case of cancer-roller-coaster-whiplash. Now, with the cryoablation out of the way, I have a reprieve from any more medical drama until the next set of scans in mid January. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">This luxury allows me to reflect on the biggest milestone of all. November 17th is the third anniversary of my stem cell transplant for Acute Myeloid Leukemia (<a href="http://www.lls.org/#/diseaseinformation/leukemia/acutemyeloidleukemia/" target="_blank">AML</a>) and the birth of my new immune system (and if my theory is correct, the reason for the recent slow down of ACCB). I remember the Thanksgivings I spent in hospitals, the setbacks, the delays for returning back to work, the life threatening infections and brutal medications. But now that I'm able to experience the beauty of this season as an AML survivor in remission, it seems like a lifetime ago. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Every Saturday, as I speed my way through Maplewood trying to get to the recycle center before it closes, I pass the Fire Department with a sign on the lawn that says, "It's In Their Blood." It's such a great double message; I would always smile to myself and make a mental note to stop there one day to explain why. Today I stopped and rang the front door. It is well documented that many men and women in civil service professions such as firefighters, police officers and the military are donors for stem cell transplants (also referred to as bone marrow transplants since stem cells create bone marrow) through the <a href="http://bethematch.org/" target="_blank">Be The Match</a> registry. The two men who opened the door were no exception. After thanking them and their fellow firefighters for joining the registry, they said that it's just part of what they do. I said that because what they do is "in their blood," it's now in my blood too, quite literally. Since I have never received a response from the letters I wrote to my donor, it felt good to share a little gratitude with others whose generosity may someday save someone's life.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Since my season of milestones is also the season for giving thanks, I've been thinking about the many things we take for granted and how easy it is to forget to be grateful for the basics. I do it all the time. I'm so happy about the big picture, I often forget about the much smaller picture -- getting one's body to do what it's told to complete the simplest of tasks. I just finished reading an amazing book, which I learned about from Jon Stewart (I never miss <i>The Daily Show</i> on Comedy Central). It's called <i><a href="http://www.amazon.com/The-Reason-Jump-Thirteen-Year-Old-Autism/dp/0812994868/ref=tmm_hrd_title_0" target="_blank">The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism</a> </i>by Naoki Higashida, published in 2007, translated from Japanese this year. This is one of the most profound books I've ever read. Barely over a hundred pages, this 13 year old boy made me think about every aspect of life in a new way. His pain, love and purity of heart stopped me in my tracks. The book explores a series of questions to help the world understand what it is like to be autistic: "Why do you ask the same questions over and over?" "Why don't you make
eye contact when you're talking?" "What is the worst thing about having
autism?" and "What's the reason you jump?"</span><br />
<span style="font-size: large;"><br /></span>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6dej9XOW-s_mZm3rCO0XSB_ME1aqii9q4k5WrXUPDSBzctPt9Aeeuv8gooLnX0eCY6yIZRG1tG82o8Kbbk1R0maI7_piX7m4PiU9E4kQG7rEaSmUL7oGFhn-8EnlvRHirCZYZz10Qrm3O/s1600/Fall+2013+1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6dej9XOW-s_mZm3rCO0XSB_ME1aqii9q4k5WrXUPDSBzctPt9Aeeuv8gooLnX0eCY6yIZRG1tG82o8Kbbk1R0maI7_piX7m4PiU9E4kQG7rEaSmUL7oGFhn-8EnlvRHirCZYZz10Qrm3O/s200/Fall+2013+1.jpg" height="200" width="150" /></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjar27gK5o7pKWhzRsBzVM5kDthrlYr6yFvNUtxxR3lwuxGlXFtVVmigHSuN4RIVTl-OPJOddeY77-GbdYT6Mbd5FgnX2g1-D_yQMFVrYX8iaJCOvv7XAU0ee2dZYUYBsJi4G0D9Tn6g_sc/s1600/Fall+2013+5.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjar27gK5o7pKWhzRsBzVM5kDthrlYr6yFvNUtxxR3lwuxGlXFtVVmigHSuN4RIVTl-OPJOddeY77-GbdYT6Mbd5FgnX2g1-D_yQMFVrYX8iaJCOvv7XAU0ee2dZYUYBsJi4G0D9Tn6g_sc/s200/Fall+2013+5.jpg" height="200" width="158" /></span></a><span style="font-size: large;">During this amazing season of nature's transitions, one question seemed especially relevant: "Why do you enjoy going out for walks so much?"</span><br />
<blockquote class="tr_bq">
<i><span style="font-size: large;">When
we look at nature, we receive a sort of permission to be alive in this
world, and our entire bodies get recharged. However often we're ignored
and pushed away by other people, nature will always give us a good big
hug, here inside our hearts.</span></i></blockquote>
<span style="font-size: large;">I don't have any kids. I don't even know anyone with an autistic child. But I don't have to in order to appreciate the magnitude of this boy's challenges and wisdom. As we move through this time of gratitude and Thanksgiving, let's all celebrate the milestones and give each other a good big hug.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-11744314809638551862013-09-14T20:12:00.000-04:002014-09-17T19:14:36.888-04:00N=1 When Science Meets Faith<span style="font-size: large;">I've never been good with math. Algebra and geometry were dreaded subjects. I picked my college major based on how few math and science classes I needed to graduate (sociology). When I got to graduate school, there was no avoiding statistics. I honestly thought I had gone to hell.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">You may recall in a <a href="http://ararecancerjourney.blogspot.com/2013/07/the-heat-is-down-and-whac-mole-is-on.html" target="_blank">recent post</a> I described how, after a year of bad news after bad news, an <a href="http://www.cancerablation.com/" target="_blank">RFA</a> procedure that was scheduled for July 17th was cancelled at the very last minute. The numerous lung tumors, old and new, that were detected on a scan in early June were either shrinking or no longer active, and <a href="http://www.hopkinsmedicine.org/vascular/staff/physicians/hong.html" target="_blank">Dr. Hong</a> felt that there was nothing problematic enough to treat. This was a mind-blower, to say the least. The prior seven months had been a race to keep up with the increasing speed of the Whac-A-Mole treatment plan my team and I put into place. Since then I have been straining my non-scientific brain to come up with how this reversal of fortune could have happened. I was thrilled, grateful and confused all at once.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Several people told me not to question what seemed to be a miracle. I'm of the mind that the word "miracle" is overused, and I wasn't quite ready for that conclusion. One thing I've learned is to expect the unexpected. Another bad scan and there goes the miracle. But those that said it was the hand of God had a point. I knew that a lot of people have been praying for me for a very long time. I've been praying quite a bit too, believing strongly in this power. How can I not, after everything I've been through? But something told me that there's more to it.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I looked for something that would clinically explain how the cancer not only slowed down, but took an about face. I decided to wait for the next scan to test my long shot theory, and yesterday I got the confirmation I had been hoping for. The PET/CT showed only one "hot" spot in my upper right lung, and nothing else that looks like cancer! I went over my list of body parts that have been treated since January:</span><br />
<ul>
<li><span style="font-size: large;">right hilar lung tumor in a very dangerous spot, treated with RFA and later with radiation -- check!</span></li>
<li><span style="font-size: large;">right kidney tumor, treated with cryoablation -- check!</span></li>
<li><span style="font-size: large;">left rib tumor, treated with one big dose of radiation -- check!</span></li>
<li><span style="font-size: large;">a bunch of new and old lung tumors, growing in the lining of both lungs (planned to treat with RFA) -- except for the one hot spot, all stable, shrinking or no longer active!</span></li>
</ul>
<span style="font-size: large;">Dr. Hong actually said I was "nearly disease free." My cousin, Karen, was there as a witness. I told him of my long shot theory and he agreed that it made sense. Here it is:</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I've written a lot about graft vs. host disease, or <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002286/" target="_blank">GVHD</a> -- the rejection process that occurs when someone gets a stem cell or bone marrow transplant from a donor. GVHD hit me hard almost immediately after my transplant and kept knocking me down for 1.5 years. The good news is that having my new immune system fight me, the host, meant that it was also fighting the leukemia, a process called graft vs. tumor. So far, science has shown that getting a transplant for a blood cancer usually never works for also treating a solid mass cancer in the same person. Usually never. My theory is that graft vs. tumor is giving both leukemia and <a href="http://www.accrf.org/" target="_blank">ACC</a> a
smack-down. This is the only clinical explanation for what is
happening. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Adenoid Cystic Carcinoma is a very rare cancer, afflicting only 1,200 people a year. Leaving aside the very few patients like me, who have this initially appear in the breast, I haven't found anyone with ACC who has also had a stem cell transplant from a donor. N=1. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">On the other hand, why did this smack-down only start this summer when my transplant was 2.5 years ago? I was on steroids and other immunosuppressants for the first 1.5 years to treat GVHD. My immune system couldn't even ramp up to normal until these drugs completely left my system. Plus, ever since the transplant, I take a really long time to heal. I'm still suffering from Post Thoracotomy Pain Syndrome from the lung surgery I had 13 months ago.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Yes, the scan
yesterday wasn't totally clean, but I'm a long way from where I was
earlier this year. (I'll have a cryoablation on the hot spot sometime
before the end of the year. There's no urgency.) Even if graft vs. tumor doesn't shut down Whac-A-Mole long term, my experience still shows a smack-down. The evidence supports the theory, regardless of what happens in the future, and I plan to share it with the researchers of the ACC clinical trials and anyone else who will listen. I'm convinced that there is a connection between ACC and treatment(s) for Acute Myeloid Leukemia. Maybe this connection will lead to something, anything, that might contribute toward a treatment for a group of people and their families who are going through unthinkable suffering.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Although my doctors all agree with my theory, none of us saw this coming. Not with my history. Enter, the power of prayer. I
believe that prayer allowed graft vs. tumor to fight the huge
amount of cancer that was found over the last year. Science and faith are not mutually exclusive.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">N=1 is not as lonely as it sounds. It's actually simple but powerful math, inspired by simple but powerful prayers. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com3tag:blogger.com,1999:blog-9193739754926367725.post-76963014057210444782013-08-31T19:15:00.001-04:002014-09-17T19:15:39.348-04:00Modern Medicine = Science Fiction?<span style="font-size: large;">Ever since my stem cell transplant in late 2010, I've thought of medicine as science fiction. These days, it's hard to even fathom what is taking place. I still can't believe that my blood and bone marrow belongs to someone else, and that my donor's DNA is coursing through my veins. That entire experience still blows my mind.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">But, as we all know, I'm now fighting on a different battle field. For the last 14 months I've returned to Cancer World, circa 2000, when I was first diagnosed with a rare head and neck cancer that appeared in a gland in my breast (Adenoid Cystic Carcinoma of the Breast or <a href="http://www.issoonline.com/content/3/1/17" target="_blank">ACCB</a>). My latest battles began in June 2012 with more tumors in my lungs, kidney and a rib, with treatments ranging from surgery, radiofrequency ablation (<a href="http://www.cancerablation.com/" target="_blank">RFA</a>), <a href="http://en.wikipedia.org/wiki/Cryoablation" target="_blank">cryoablation</a> and radiation. Then, in July, I had an about-face and a CT scan revealed that several lung tumors were shrinking or just going away. I'm trying not to obsess on the results of the next PET/CT on September 13th, but I'm sure you can guess how that's going. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">In the meantime, I've been continuing my quest for answers. The <a href="http://www.genome.gov/27553526" target="_blank">Human Genome Project</a> began 10 years ago, and the research to predict a person's predisposition for illnesses based on genetics has exploded.</span><br />
<blockquote class="tr_bq">
<span style="font-size: large;">The last decade has revealed the transformative power of using
genomic information for the diagnosis and treatment of cancer.... Determining the presence of
specific genomic variants also avoids the implementation of ineffective
treatments.</span></blockquote>
<span style="font-size: large;"> In 2009, just before I was diagnosed with leukemia, a <a href="http://www.pnas.org/content/106/44/18740.full" target="_blank">Swedish study</a> found that a fusion of the MYB and the NFIB genes cause ACC (regardless of whether is occurs in the head/neck or the breast). Since then, targeted therapies have been developed and several more are in the pipeline. Targeted therapies are not chemotherapy. They are agents that attach to receptors on
cancer cells and turn off the growth, some even kill the cells. A few clinical trials have emerged for these drugs to treat metastatic ACC, but participation can mean significant travel expenses and harsh side effects, making travel even harder. It's a huge commitment to receive treatment with a study drug that is so new (no trials for ACC are more than two years old) and unproven.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Enter: Tumor Profiling. Because of the advances of the Human Genome Project, the price of genetic testing has been driven down. Cancer patients can now submit slides of their tumors (made during surgery when the pathologist determines a diagnosis) to an outside company to be tested for genetic abnormalities. The results not only tell people what cancers they are predisposed to, but what clinical trials are available for those particular cancers. A person can then decide which trial is likely to work, rather than just hoping that they choose the trial with the right drug that might save them.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">As a friend recently told me, "Forget everything we knew about cancer treatment and research prior to ten years ago. Everything will now be based on a person's specific genetics. This is the future of medical science." He's right. The research I did on private companies identified by the Adenoid Cystic Carcinoma Research Foundation (<a href="http://www.accrf.org/" target="_blank">ACCRF</a>) does not pertain just to ACC patients, but to ALL cancer patients:</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><a href="http://www.foundationone.com/" target="_blank">Foundation One</a> -- They test for 236 known cancer genes. The cost is $5,800.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><a href="http://personalgenome.com/" target="_blank">Personal Genome Diagnostics</a>: They have two tests. One tests for 120
cancer genes. This test
is $4,800. The other test is for 20,766 cancer genes and is $12,500. They are associated with Johns Hopkins in Baltimore.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><a href="http://oncopathlabs.com/" target="_blank">Oncopath</a>: They test for 159 genes. They wanted me to tell them which genes to test for, after which they would give
me a quote.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Since research on genetics is happening so fast, I decided to wait to have my tumors profiled so that the test I choose will capture as many cancer genes as possible. It only takes a few weeks to get the results from these companies. All three have very nice staff and offer assistance with insurance coverage. For many cancers, genetic testing is covered. But the latest research on ACC and the need for genetic testing is so new, my best outcome would be to try and have this expense covered with out of network benefits.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Another newly discovered resource in my world is an online support group associated with the Adenoid Cystic Carcinoma Organization International, <a href="http://www.accoi.org/" target="_blank">ACCOI</a>. This all volunteer organization is incredibly helpful for ACC patients. Over 1,400 people have joined the patient website, sharing their experiences, support and suggestions. ACC is horrific because it is so rare and misunderstood. It doesn't behave like most head/neck cancers and for me, it's not classic breast cancer either. It's its own beast and because no known chemotherapy works, it's incredibly hard to find doctors who understand what it is, especially in remote parts of the world. This group is to me what Facebook is to so many others. I've "met" people from around the world and learned a wealth of information. I even learned of four other people who have metastatic ACCB. (You may not think that's a lot, but it is.) I also learned of some <b>very</b> interesting connections between ACC and the <a href="http://www.lls.org/#/diseaseinformation/leukemia/acutemyeloidleukemia/" target="_blank">Acute Myeloid Leukemia</a> I had. I'll save that for another post. I have yet to find anyone on the site who has had a stem cell transplant. As far as I know, I still hold the world record on that one. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">As I face this next set of tests, I'm somehow comforted with all this new and overwhelming information. I feel like I have more tools, more weapons and more soldiers who are fighting at my side. I think that the old paradigm of taking decades to bring drugs to market has changed. This is hopeful for all patients with serious illnesses who are running out of time.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Genetic testing is no longer limited to familial connections. It goes way beyond baldness and eye color. No matter how much it looks like science fiction, genetics is providing a road map for survival, a road map for cures. It's all in the genes.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com1tag:blogger.com,1999:blog-9193739754926367725.post-38476349314739158282013-07-20T20:34:00.000-04:002014-09-17T19:17:19.360-04:00The heat is down, and Whac-A-Mole is on hold.<span style="font-size: large;">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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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 <a href="http://www.cancerablation.com/" target="_blank">RFA</a> 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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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. <span style="mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: 'Times New Roman'; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-theme-font: minor-latin; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-themecolor: dark2;"> <a href="http://www.hopkinsmedicine.org/vascular/staff/physicians/hong.html" target="_blank">Dr. Hong</a>,</span> 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, <b>only six weeks ago</b>, 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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">What about that tumor on my rib I mentioned in my last post? A few weeks ago <a href="http://www.hopkinsmedicine.org/doctors/results/directory/profile/3260462/russell-hales?CLEARPAGECACHE=false&firstLetter=H" target="_blank">Dr. Hales</a> 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. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-34693321499028122172013-06-23T17:38:00.003-04:002014-09-17T19:18:09.692-04:00Whac-A-Mole<span style="font-size: large;">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 <a href="http://en.wikipedia.org/wiki/Whac-A-Mole" target="_blank">Whac-A-Mole</a> 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 (<a href="http://onlinelibrary.wiley.com/doi/10.1002/cncr.10455/full" target="_blank">ACCB</a>). [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.]</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I had a <a href="http://www.radiologyinfo.org/en/info.cfm?pg=PET" target="_blank">PET/CT</a> 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 <a href="http://en.wikipedia.org/wiki/Cryoablation" target="_blank">cryoablation</a> 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 <a href="http://www.ararecancerjourney.blogspot.com/2013/02/wrecking-ball.html" target="_blank">Wrecking Ball</a> 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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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 <a href="http://home.comcast.net/~wnor/thoraxlesson2.htm" target="_blank">pleura</a>, 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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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 (<a href="http://www.cancerablation.com/" target="_blank">RFA</a>). 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. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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 <a href="http://www.pnas.org/content/106/44/18740.full?sid=6d52ca05-75c0-4095-8a03-e85b4bb669bc" target="_blank">Swedish study</a> (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 <a href="http://www.accrf.org/" target="_blank">Adenoid Cystic Carcinoma Research Foundation</a> 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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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.</span><br />
<span style="font-size: large;"><br /></span>
<div class="MsoNormal">
<span style="font-size: large;">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.</span></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy</span><br />
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span>Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com1tag:blogger.com,1999:blog-9193739754926367725.post-77625270755166397912013-04-28T13:43:00.000-04:002014-09-17T19:19:27.245-04:00Hall of Fame: An Angel Earns Her Wings<span style="font-size: large;">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 <a href="http://ararecancerjourney.blogspot.com/2012/09/this-time-i-got-to-be-donor.html" target="_blank">9/28/12</a> and <a href="http://ararecancerjourney.blogspot.com/2012/11/giving-thanks-during-stormy-times.html" target="_blank">11/22/12</a> posts). On April 10th, Mya's suffering ended and this little angel earned her wings.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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.</span><br />
<span style="font-size: large;"><br /></span>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWKjavsTxNB1On0fIMUEEkmBxyK-361auOKTD-gPH_3ZjEIk2pR9mZMfLINITTcJsHyz_bMQ4QM2dNCnWJmKPu9gz5UIMl-2_FMfBs_Mgl0C4uhUFtGElcxOzppARklhNJT0pUSuh1k0-b/s1600/Mya's+Halloween+2012.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWKjavsTxNB1On0fIMUEEkmBxyK-361auOKTD-gPH_3ZjEIk2pR9mZMfLINITTcJsHyz_bMQ4QM2dNCnWJmKPu9gz5UIMl-2_FMfBs_Mgl0C4uhUFtGElcxOzppARklhNJT0pUSuh1k0-b/s200/Mya's+Halloween+2012.jpg" height="200" width="200" /></span></a><span style="font-size: large;">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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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 <a href="http://www.caringbridge.org/visit/myaterry" target="_blank">webpage</a>, 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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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:</span><br />
<blockquote class="tr_bq">
<span style="font-family: inherit; font-size: large;">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....</span></blockquote>
<blockquote class="tr_bq">
<span style="font-family: inherit; font-size: large;">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. </span></blockquote>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB_Bv2U46SjGUT1mB5AtTlD5h8rVFmFIAdWwndXxzHWIQg9V9SGGMGMyuBsAN7GDKGrwgRG8VvOXmW919EGEG8T-VGNhBYwEO9SonM6I2XeEOPLNaDRvYcQep0_QCysMmVLxPh6GTCFmZ1/s1600/Mya+riding+dolphin.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB_Bv2U46SjGUT1mB5AtTlD5h8rVFmFIAdWwndXxzHWIQg9V9SGGMGMyuBsAN7GDKGrwgRG8VvOXmW919EGEG8T-VGNhBYwEO9SonM6I2XeEOPLNaDRvYcQep0_QCysMmVLxPh6GTCFmZ1/s200/Mya+riding+dolphin.jpg" height="110" width="200" /></span></a><span style="font-size: large;">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 <i>"<a href="http://www.amazon.com/The-Day-Got-Tube-Volume/dp/1468198750/ref=sr_1_1?ie=UTF8&qid=1367166749&sr=8-1&keywords=the+day+i+got+my+ng+tube" target="_blank">The Day I Got My NG Tube</a>." </i>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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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:</span><br />
<blockquote class="tr_bq">
<b><span style="font-size: large;">"Hall Of Fame" </span></b></blockquote>
<div style="margin-left: 10px; margin-right: 10px;">
<blockquote>
<!-- start of lyrics --><span style="font-size: large;">Yeah, you can be the greatest</span><br />
<span style="font-size: large;">You can be the best</span><br />
<span style="font-size: large;">You can be the King Kong banging on your chest</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">You could beat the world</span><br />
<span style="font-size: large;">You could beat the war</span><br />
<span style="font-size: large;">You could talk to God, go banging on his door</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">You can throw your hands up</span><br />
<span style="font-size: large;">You can beat the clock (yeah)</span><br />
<span style="font-size: large;">You can move a mountain</span><br />
<span style="font-size: large;">You can break rocks</span><br />
<span style="font-size: large;">You can be a master</span><br />
<span style="font-size: large;">Don't wait for luck</span><br />
<span style="font-size: large;">Dedicate yourself and you go and find yourself</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Standing in the hall of fame (yeah)</span><br />
<span style="font-size: large;">And the world's gonna know your name (yeah)</span><br />
<span style="font-size: large;">'Cause you burn with the brightest flame (yeah)</span><br />
<span style="font-size: large;">And the world's gonna know your name (yeah)</span><br />
<span style="font-size: large;">And you'll be on the walls of the hall of fame</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">You can go the distance</span><br />
<span style="font-size: large;">You can run the mile</span><br />
<span style="font-size: large;">You can walk straight through hell with a smile</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">You could be the hero</span><br />
<span style="font-size: large;">You could get the gold</span><br />
<span style="font-size: large;">Breaking all the records they thought never could be broke</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Yeah, do it for your people</span><br />
<span style="font-size: large;">Do it for your pride</span><br />
<span style="font-size: large;">How you ever gonna know if you never even try?</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Do it for your country</span><br />
<span style="font-size: large;">Do it for your name</span><br />
<span style="font-size: large;">'Cause there's gonna be a day...</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">When you're standing in the hall of fame (yeah)</span><br />
<span style="font-size: large;">And the world's gonna know your name (yeah)</span><br />
<span style="font-size: large;">'Cause you burn with the brightest flame (yeah)</span><br />
<span style="font-size: large;">And the world's gonna know your name (yeah)</span><br />
<span style="font-size: large;">And you'll be on the walls of the hall of fame</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Be a champion, be a champion, be a champion, be a champion</span><br />
<span style="font-size: large;">On the walls of the hall of fame....</span></blockquote>
<div style="text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZkQ2rBPYek1kFLlt1H3dSIvfL30vBimUWuwFFMn24fDQWkBlSVwIHw3du3XMDGjFXneWpA3uh6NitE3PmbdatFAJR3NNAYrVRu-9eTflwP6ZeqGcRaBgOV0tGlQUquOB-MNrob67eSv8_/s1600/Mya.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZkQ2rBPYek1kFLlt1H3dSIvfL30vBimUWuwFFMn24fDQWkBlSVwIHw3du3XMDGjFXneWpA3uh6NitE3PmbdatFAJR3NNAYrVRu-9eTflwP6ZeqGcRaBgOV0tGlQUquOB-MNrob67eSv8_/s200/Mya.jpg" height="154" width="200" /></span></a><span style="font-size: large;">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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">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.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Kathy </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">CANcer + HEALth = CAN HEAL</span></div>
</div>
Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-89016437454078696102013-02-25T18:29:00.000-05:002014-11-07T20:18:32.502-05:00Wrecking Ball<span style="font-size: large;">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.<span style="mso-spacerun: yes;"> </span>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. <i style="mso-bidi-font-style: normal;">Wrecking
Ball</i> 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.<span style="mso-spacerun: yes;"> </span>This song is personal for me, even though it's really a song about New Jersey.</span><br />
<blockquote class="tr_bq">
<i><span style="font-size: large;">When your best hopes and desires, are scattered to the wind<br />
And hard times come, and hard times go<br />
And hard times come, and hard times go...<br i="" /><i>
Yeah just to come again<br i="" />
<i>
Bring on your wrecking ball<br />
Come on and take your best shot, let me see what you've got<br />
Bring on your wrecking ball</i></i></span></i></blockquote>
<span style="font-size: large;">I 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 <i>No Surrender </i>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 (<a href="http://www.accrf.org/" target="_blank">ACCB</a>). On December 7<sup>th</sup>, Pearl Harbor Day, I traveled to Baltimore for a follow up
PET/CT to check on the two radiofrequency ablations
(
<span style="font-family: inherit;"> <a href="http://www.cancerablation.com/" target="_blank">RFA</a>s) 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).<span style="mso-spacerun: yes;"> </span>But instead the wrecking ball caught me off guard.<span style="mso-spacerun: yes;"> </span></span>
</span><br />
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I mentioned in my <span style="color: black;"><a href="http://ararecancerjourney.blogspot.com/2012/08/tomorrow-therell-be-sunshine-and-all.html" target="_blank">August 5, 2012</a></span> post that
Dr. Georgiades successfully ablated a very tricky tumor in an area of my lung
called the hilar region.<span style="mso-spacerun: yes;"> </span>Since ablations
can’t really be confirmed as successful for 3+ months, I was jumping the gun a
little.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>He had to accomplish this without
causing a “catastrophic event.”<span style="mso-spacerun: yes;"> </span>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.”<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span></span></span><br />
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Unfortunately, the December scan showed that this ablation was not entirely
successful.<span style="mso-spacerun: yes;"> </span>The scan showed active
cancer surrounding the ablated area.<span style="mso-spacerun: yes;"> </span>In
my first formal consultation with </span><span style="font-family: inherit;"><span style="color: red;"><span style="mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-theme-font: minor-latin; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-themecolor: dark2;"> <a href="http://www.hopkinsmedicine.org/profiles/results/directory/profile/0017308/kelvin-hong?CLEARPAGECACHE=false&appRedirRef=https%3A%2F%2Fwww%2Egoogle%2Ecom%2F" target="_blank">Dr. Hong</a><span style="color: black;"> (Dr. G relocated his practice and family back to Cypress), </span></span></span>he told me that the danger of ablating an even bigger area in the hilar region
was too great.<span style="mso-spacerun: yes;"> </span>“Perhaps radiation is an
option for treating the rest of this tumor.”<span style="mso-spacerun: yes;">
</span>He referred me to a radiation oncologist, <a href="http://www.hopkinsmedicine.org/doctors/results/directory/profile/3260462/russell-hales?CLEARPAGECACHE=false&firstLetter=H" target="_blank">Dr.Russell Hales</a>, for an opinion.</span></span><br />
<span style="font-size: large;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">As the word “perhaps” echoed in my brain, he said, “In addition, the scan
shows a rather large lesion in your right kidney.”<span style="mso-spacerun: yes;"> </span>He said that he “might” be able to ablate
this using <a href="http://en.wikipedia.org/wiki/Cryoablation" target="_blank">cryoablation</a> (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.<span style="mso-spacerun: yes;"> </span>The other option would be, you guessed it,
more surgery. <i>Bring on your wrecking ball.</i><span style="mso-spacerun: yes;"> </span>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. </span></span><br />
<blockquote class="tr_bq">
<i><span style="font-family: inherit; font-size: large;">So hold tight on your anger, hold tight on your anger</span></i><br />
<i><span style="font-family: inherit; font-size: large;">Hold tight to your anger, and don't fall to your fears </span></i></blockquote>
<span style="font-size: large;"><span style="font-family: inherit;"><span style="mso-bidi-font-style: italic;">Just before Christmas I went for both
consultations.<span style="mso-spacerun: yes;"> </span>Convinced that my good
luck in dodging bullets had run out, I braced for the dreaded dialogue that I’ve
imagined since 2006:<span style="mso-spacerun: yes;"> </span></span>"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.</span><span style="color: #222222;"> </span></span><br />
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><span style="color: #222222;">Dr. Hales said that the reason
the hilar is considered a “no fly zone” is because it’s too dangerous to fly
there.<span style="mso-spacerun: yes;"> </span>He also said that using conventional
radiation (30-40 daily treatments) for my type of cancer has not been terribly
successful.<span style="mso-spacerun: yes;"> </span>But there is a relatively
new technique called Stereotactic Body Radiation Therapy (<a href="http://www.rasradiationoncology.com/radiation_oncology/stereotactic-body-radiation-therapy" target="_blank">SBRT</a>), which uses a
higher dose of radiation in fewer treatments.<span style="mso-spacerun: yes;">
</span>Dr. Hales brought my case before several other doctors from many different cancer disciplines, called a <span style="color: black;"><span style="color: #222222;">t</span>umor <span style="color: #222222;">b</span>oard</span>, 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.<span style="mso-spacerun: yes;"> </span></span><span style="color: #222222;"><span style="color: #222222;">He proposed using SBRT for my rare type of cancer (a first) in the “no fly zone” (another first outside of a
clinical trial).<span style="mso-spacerun: yes;"> </span></span>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.</span></span></div>
<div class="MsoNormal">
</div>
<span style="font-family: inherit; font-size: large;">A kidney biopsy of the new mystery
lesion in early January came back positive for more
ACCB.<span style="mso-spacerun: yes;"> </span><i>Bring on your wrecking ball. </i>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:<span style="mso-spacerun: yes;"> </span>have
a stent inserted to protect my plumbing, followed the next day with a
cryoablation to freeze the tumor in my kidney.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The American Cancer Society has built hotel type lodging in several cities near
well known hospitals for cancer patients who need long term treatment.<span style="mso-spacerun: yes;"> </span>Thankfully, the Hope Lodge near Hopkins had room for me
when I was scheduled to begin all these procedures.<span style="mso-spacerun: yes;"> </span>I moved there on January 15<sup>th</sup>, and<i> </i>I lived there for almost a month.<span style="mso-spacerun: yes;"> </span>I was relieved that I completed radiation
without any problems.<span style="mso-spacerun: yes;"> </span>I was able to work
remotely the whole time, taking an hour each day to go to Hopkins for treatment.<span style="mso-spacerun: yes;"> </span>I finished radiation on February 5<sup>th</sup>,
had the stent placed on the 7<sup>th</sup>, and the cryoablation took place on the 8<sup>th</sup>.<span style="mso-spacerun: yes;"> </span>Cathie helped me move back home on the 10<sup>th</sup>,
I worked from home on the 11<sup>th</sup>, and returned to the office on the 12<sup>th</sup>.<span style="mso-spacerun: yes;"> </span>Of course this wasn’t as easy as it
sounds.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>But returning home to Sadie made me so happy, it was impossible to
dwell on wrecking ball damage.<span style="font-family: inherit;"> </span></span><br />
<span style="font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>The patients and caregivers I met at Hope
Lodge were amazing people with tremendous courage and a fierce will to
live.<span style="mso-spacerun: yes;"> </span>Their hope was the <i style="mso-bidi-font-style: normal;">No Surrender</i> inspiration I needed to reload
my weapons in this fight.</span><br />
<blockquote class="tr_bq">
<div class="MsoNormal">
<i><span style="font-family: inherit; font-size: large;">So if you got the guts mister, yeah if you've got the balls</span></i><br />
<i><span style="font-family: inherit; font-size: large;">If you think it's your time, then step to the line, and bring on your wrecking
ball...</span></i></div>
</blockquote>
<span style="font-size: large;">It really is a great song.</span><br />
<span style="font-size: large;"><br /></span>
<br />
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: medium; mso-spacerun: yes;">Kathy</span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: medium; mso-spacerun: yes;">CANcer + HEALth = CAN HEAL </span></span></div>
<span style="font-family: inherit; font-size: large;">
</span>
Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com0tag:blogger.com,1999:blog-9193739754926367725.post-73682700725577312742012-11-22T11:25:00.001-05:002012-11-22T12:59:57.333-05:00Giving Thanks During Stormy TimesThanksgiving 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.<br />
<br />
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:<br />
<blockquote class="tr_bq">
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. (<i>Atlantic City</i>)</blockquote>
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.<br />
<br />
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 <a href="http://www.ncbi.nlm.nih.gov/pubmed/15382766" target="_blank">Post Thoracotomy Pain Syndrome</a>, 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.<br />
<br />
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, <a href="http://ararecancerjourney.blogspot.com/2012/03/what-doesnt-kill-you.html" target="_blank">What Doesn't Kill You...</a>) 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:<br />
<blockquote class="tr_bq">
They say you can't take it with you, but I think that they're wrong<br />
'Cause all I know is I woke up this morning, and something big was gone...<br />
The Mona Lisa, the David, the Sistine Chapel, Jesus, Mary, and Joe<br />
And when they built you, brother, they broke the mold. (<i>Terry's Song</i>)</blockquote>
Ironically, Vic passed away on my second transplant birthday. It was a day for recognizing the fragility of life and death. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNLHIov02YEWYLbcbaZZD_ZhgxM5t38noV32qjvO4nW6lH_YFN_BdnL60-OUbSDoV_JTjRynHJzjHLZte1CCRFRY7TYJxV9utC50LBLcXYCzcPJQYyRjaY9DIQnJ9WsWcN1pEOUKZZi8iA/s1600/Vic+06-04.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNLHIov02YEWYLbcbaZZD_ZhgxM5t38noV32qjvO4nW6lH_YFN_BdnL60-OUbSDoV_JTjRynHJzjHLZte1CCRFRY7TYJxV9utC50LBLcXYCzcPJQYyRjaY9DIQnJ9WsWcN1pEOUKZZi8iA/s320/Vic+06-04.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">June 2004</td></tr>
</tbody></table>
<br />
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 <a href="http://www.caringbridge.org/visit/myaterry/mystory" target="_blank">here</a>.<br />
<br />
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.<br />
<br />
Kathy<br />
CANcer + HEALth = CAN HEAL Kathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com1tag:blogger.com,1999:blog-9193739754926367725.post-71126484417302511782012-09-28T15:16:00.000-04:002012-11-22T11:22:32.742-05:00This time I got to be the donor!I've never been so glad to see the end of Summer. This was a tough
one. But, like everything in Cancer World, there were positive aspects to
all the pain and stress. The lung resection on August 14th was rather
brutal and my recovery is ongoing, but I was able to make a contribution to
science, and that was important to me. The Adenoid Cystic Carcinoma
Research Foundation (<a href="http://www.accrf.org/" target="_blank">ACCRF</a>) works with the University of Virginia in Charlottesville to conduct research on ACC. They have a tumor donation program, and I arranged with Hackensack Hospital to have them send my tumors to U of V for research projects. Since my ACC history is so unique (I am among a few dozen cases ever recorded with my specific condition), I was excited that I could contribute something that might lead to targeted remedies or even a cure for this particular cancer.<br />
<br />
I am alive today only because of an anonymous man somewhere in Europe who donated his stem cells to the international registry for blood related transplantation (<a href="http://marrow.org/Home.aspx" target="_blank">Be The Match</a>). If there was some
way that I could donate too, I was all for it.<br />
<br />
As for the surgery, it was very successful, but more complicated than
expected. One of the tumors was close to my heart and my chest wall,
which extended the anticipated two hour surgery to closer to five. Because this
"minimally invasive" procedure was more extensive, I'm still fairly
sore. It feels like my rib cage has been wrapped in a giant Ace bandage
and it's on way too tight. Six weeks post surgery and I still can't get
that damned invisible bandage off! I'm managing much better, but moving
pretty slow. <br />
<br />
Add to this an unexpected arm injury. To position me correctly on the OR
table, the surgical team had to strap my left arm up and over my head.
Prolonged lack of blood flow and stretching beyond anything Gumby would have
tolerated, landed me at physical therapy twice a week to recover the use of
that arm. This too, is still sore, but manageable and much improved. <br />
<br />
Lastly, the palms of my hands, feet and legs started burning a few weeks ago
but with little visible evidence of the cause. It's not like a sunburn,
which hurts on the outside. It's an internal burning that is very similar
to Graft v. Host Disease of the skin (flashback to the early months of
transplant recovery). My transplant team put me on a low dose of steroids
to tamp it down, but it didn't work. The current theory is that it may be
a type of neuropathy or a misfiring of nerves, brought on by the trauma of the
surgery. I'm leaning toward another mystery response by my new immune
system, which must be very upset that I put my body through the ringer
again. Last year when I had a lung resection on my right lung to remove a
transplant related infection, I had all kinds of mystery problems that no one
could diagnose. They eventually resolved on their own, and I'm thinking
this will too. With a bum left arm and burning hands, I wasn't able to
type for any length of time, which is why this post is so overdue.<br />
<br />
With all these setbacks impeding my planned recovery, I've been out of work
longer than I planned. But I hope to remedy that soon, since things will
only improve from here and I have a busy Fall ahead. Now that both
cancers are under control, I can focus on getting on with life and figuring out
ways to contribute more than just tumors.<br />
<br />
I am closely following the story of a 10 year old girl named Mya, who is
fighting a war at St. Jude Children's Research
Hospital in Memphis. Last week Mya underwent her
3rd transplant and is waiting for the engraftment to take so that her
unthinkable pain and complications will subside. You can read Mya's story <a href="http://www.caringbridge.org/visit/myaterry/mystory" target="_blank">here</a>. It's so easy to get
wrapped up in our day-to-day worlds and look only at that which demands our
immediate attention. But we owe it to ourselves and to each other to take
a step back and give thanks for what we have, never forget that there are
others who are far worse off, and look for ways to make a positive
impact. Taking action to improve the human condition is as much a part of
our DNA as anything that science can detect. It's what we do.
Please take a moment and sends prayers and positive thoughts to Mya and so many
others like her.<br />
<br />
Kathy<br />
CANcer + HEALth = CAN HEALKathryn Seeleyhttp://www.blogger.com/profile/10304692867653493516noreply@blogger.com2