BY KATHY LATOUR | DECEMBER 9, 2013
OK, we have all done it. Forgotten something and then laughingly blamed it on chemobrain, that cotton candy brain that came to stay to a greater or lesser degree with chemotherapy.
I even make a joke about it in my one-woman show when I say I tell those women in chemotherapy for breast cancer that they know they have chemobrain when they are having an intense discussion with someone and they cannot remember his name – and they are married to him.
It's funny but it's not funny.
I can remember in my support group back in 1989 when friends would talk about losing their minds. Their cancer was no longer a problem, but they could not go back to work because they couldn't remember how to do whatever it was they did.
Our oncologists swore it was the lack of estrogen – or at least that's what mine said. He said it was normal with the loss of estrogen when the chemo shut down my body. Whew eeee. That don't cut it anymore because we know now it's not just women, and it is many different kinds of cancer – and, finally, because of our complaints, the condition has been studied and they have found it is real.
I didn't have chemobrain during treatment – well, I don't think I did. Maybe I am really a rocket scientist or maybe I would have been compelled to get a PhD if it hadn't been for chemotherapy.
But now that I am having the age-related issues where I can't remember where I put something or someone's name, I can tell you that my frustration level has given me new insights into what those women went through.
Chemobrain is, if not the first, one of the first side effects of treatment that was studied as a result of patient input - that's the nice way of saying we were really upset and they finally heard us. I guess the oncologists heard the word frustrated enough to get their attention that something was going on here. I can remember talking to a friend who was an attorney who loved arguing cases in court. She was really fast on her feet and loved the back and forth quick witted banter.
She could really think on her feet. But after chemotherapy, she had to find another way to express herself. That is a huge loss of self esteem and all that makes us who we are. One of the reasons I wanted to write the story on rehabilitation for chemobrain in the current issue was to give some options of what people can do about it. It's one thing to say, "we know it's real and it's not in our head" and another all together to talk about ways to improve it.
I hope the story gives you some options to try. Let me know. And if you have discovered your own solution tell us in the comments section.RELATED POSTS
BY KATHY LATOUR | NOVEMBER 6, 2013
I don't know a cancer survivor who doesn't have some kind of issue with the holidays. All the focus on family, faith, fun and the future can wear on people who now may have different relationships with their family, may be suffering a trial of faith, who haven't had fun in a while (unless you consider racing up and down hospital hallways with your IV pole fun), and who no longer can be sure of the future as guaranteed.
There are so many issues with the holidays for cancer survivors that I don't know where to begin. For me November and December became times to remember every family moment and make them the biggest and best ever -- just in case I wasn't going to make it to next year. Since my first holidays came right after I started chemotherapy, I have no memory of them, but I have a feeling I put up a good front since I did the "I am woman and cancer won't keep me down" routine for a few years. I often joke about American women never allowing themselves time to be sick because their identify is tied up in doing Thanksgiving for 30.
I have had other cancer friends tell me they didn't want to see a bunch of family when they knew they would get the looks that bore through your soul as the person said, "HOWWWWW AREE YOOOUUUU??" while looking at you like you might die any minute.
Others talked about family avoiding them, of course, for fear they would get their cooties, and more than one friend said family gatherings were fine until one or more relatives began to weigh in on the cure for cancer that is out there and being kept from us.
Then there are the survivors who are alone during the holidays either because family is too far away to join them or they feel too rotten to even think about getting on a plane and breathing all those re-circulated germs while other passengers stared at them.
Sure, for many people Thanksgiving is just fine because it's one day when everyone eats together, and for some, give thanks that they are alive.
But Thanksgiving is only the warm up for Christmas, which had always been my favorite holiday before cancer added mortality to the day. At my first "Cancer Christmas" with my 1-year-old daughter, I was feeling lousy in the middle of chemotherapy and trying valiantly to buy out the mall so she would have all the gifts of her childhood – in case I died.
The challenge here came when I didn't die and had to outdo the previous year. That lasted for a few years until my emotional state allowed me to enjoy Christmas again – and my bankbook suggested I get reasonable.
If you are facing the holidays this year as a new cancer survivor, here are a few of my suggestions, and I am hoping those who read this will also provide theirs.
1. Let people help. I know, I know, somehow our role in life is connected to healing. There is magic if you can maintain your role whether it be hanging the Christmas lights on the top of your pitched roof or making your grandmother's signature cranberry relish that requires six hours in the kitchen.
2. Lower everyone's expectations (read teenagers) about Christmas this year because cancer has created a fatigue so strong all mom or dad wants to do is lie on the couch. For younger children let them know that there will still be Christmas, but it will be different.
3. Feel what you are feeling. I think the best thing a therapist said to me was "feelings are not right or wrong, they are just feelings, and if you are having them they are legitimate." OK, this may not be the most comfortable holiday season for some people, but come on, you're dealing with cancer so you get to do whatever you want.
4. Establish some new traditions to create a "this year forward" approach to the new holidays.
5. Give yourself the best present of all. Enjoy whatever the season brings.RELATED POSTS
BY KATHY LATOUR | OCTOBER 15, 2013
When I received the response to my blog on the Metastatic Breast Cancer Network meeting in Houston, I was, at first, taken aback a little. If you didn't read it, Shirley Mertz, President of the Metastatic Breast Cancer Network,wanted to correct some of my opinions about the meeting. I think she felt my blog was too positive because I pointed out that many women looked well and were getting durable remissions with new treatment.
She was right to call me on it when the median survival rate for those with metastatic breast cancer is 1-2 years and the 5-year survival rate is only 15 percent. I have a hard time when everyone is heralding the progress we have made in breast cancer since approximately 40,000 women are still dying each year of breast cancer -- metastatic breast cancer. That figure isn't much different than the numbers we have been keeping for 40 years. You don't die of breast cancer unless it is metastatic, and we need more research funds given for breast cancer to 1. Keep it from becoming metastatic and 2. Keep it from killing women once it is.
I think I wanted to believe those women were doing better because I don't want to think of women dying of breast cancer; it makes me think of my mom.
October is breast cancer awareness month. It is also the month I was diagnosed in 1986 when my daughter was 13 months old, and it is also the month my mother was diagnosed five years to the week AFTER me.
My mom already had lung mets when she was diagnosed at age 72 in 1991, one of the 5 to 10 percent who are metastatic at diagnosis. She was advanced for a number of reasons. First, her tumor was in a strange place deeply under her breast and close to the chest wall. She had had bad mammography that did not include her chest wall, which it should have. So the tumor was the size of an egg by the time she found it. She also ignored it for a while because she knew she had just had a mammogram and everything was all right. Not until she told me about the lump did I say she had to have it checked out. I immediately called my surgeon and made her an appointment.
When my sister and I arrived at the surgery center where my surgeon had removed the mass, I knew immediately it was malignant. Mom wasn't out in the main area in a recliner drinking juice with a warm blanket over her. She was in one of the private cubbies off to the side. Of course, my sister didn't have a clue why I stopped immediately and began to choke up.
Mom was strangely cheerful when my surgeon was telling her the results of the frozen section pathology, saying that I had had it and I was fine, and I would walk her through this. She named me the executive director of her cancer.
At the next meeting with my surgeon, we went over the pathology report and the results of the scans that had followed. There were shadows in her lungs. It had already metastasized. Mom had no idea what it meant. I did.
The only way to describe the next six months is hell. I took her for her first chemotherapy and got nauseated from the smell. I couldn't go into the infusion area, so my sister went with her. Luckily, the wonderful antiemetics that keep women from the awful nausea and vomiting had hit the market in the five years since my diagnosis, and Mom had no problem going home and making dinner after her treatment. I was on the couch nauseated. She got a good laugh at that.
Mom didn't respond to any of the chemotherapy available at the time, and they all made her feel rotten. When she asked my permission to stop treatment, I told her absolutely. She said she wanted to spend the rest of her time feeling well. It didn't happen because the chemo wiped out her immune system and the cancer galloped. She died on May 22, 1992. She was out of pain and we were all able to say goodbye.
So when someone gives me a hard time about not understanding metastatic breast cancer, get over it. I do. I just don't want to tell you why.
But I do get the frustration around the issue. Only 5 percent of funding goes to metastatic breast cancer.
On October 13, Metastatic Breast Cancer Awareness Day, 15 different non-profits and advocacy groups announced they had joined forces as Metastatic Breast Cancer Alliance to change the way metastatic breast cancer is understood and to increase focus on research.
The Alliance, which also includes pharma representatives Celegene, Genentech and Pfizer, will initially conduct an analysis to identify gaps, duplication of research and to gain a consensus on how to move forward.
I am with you all the way. For my mom.
My mom and my daughter Kirtley six months before my diagnosis.RELATED POSTS
BY KATHY LATOUR | OCTOBER 1, 2013
Following the posting of my blog on the conference held by the Metastatic Breast Cancer Network, I received the following note from its president.
I read on your blog that you were surprised to find that few of the patient attendees looked ill. Unfortunately, at least 10 percent of registered patients had to cancel at the last minute because they were too ill to attend.
While the metastatic breast cancer community wishes we could be "living with chronic cancer," the median survival rate for those with metastatic breast cancer is 1-2 years and the 5-year survival rate is only 15 percent.
The number of women and men who die each year of breast cancer is still approximately 40,000, a number that has not changed much in the last 20 years. As you state in your blog, there is a great need for funding specifically for metastatic disease. Currently, only 5 percent of all breast cancer funding goes to study metastasis which kills 95 percent of breast cancer patients. Finally, while you mentioned that those with metastatic breast cancer can live for a number of years, please let your readers know that metastatic breast cancer is not one disease. There are at least three known subtypes, each with different signaling pathways and growth factors. Thus, survival rates vary significantly among patients.
For one of the subtypes, triple-negative metastatic breast cancer, there is no identified targeted therapy that attacks only the cancer cells. For patients with this type of breast cancer, chemotherapy helps the disease, but patients must live with cytotoxic side effects that impact quality of life. And, for metastatic breast cancer patients, treatment never ends.
Shirley Mertz, President
Metastatic Breast Cancer Network
BY KATHY LATOUR | SEPTEMBER 24, 2013
More than 200 men and women with metastatic breast cancer gathered in Houston last weekend to hear not only the latest updates on treatment but also to hear from each other. This is a group where networking with other attendees offers hope to the newly metastatic that they too will live well for years.
Meetings of this sort can show exactly how far we have come with treatment. Few of the women looked ill, turbans and wigs being the most obvious signs that someone was in treatment. For the most part, this crowd looked like any other at the Friday night reception - loud, laughing and ready to learn.
Put on by the Metastatic Breast Cancer Network,the meeting began on Friday night with a reception and continued on Saturday and Sunday with workshops and lots of time for networking. The breakouts covered a wide range of topics such as hormone-positive metastatic breast cancer, triple-negative metastatic breast cancer, HER2-positive breast cancer, bone mets, health insurance, disability and much more. A favorite was the session on "Living with Metastatic Disease" by Don Dizon, a doctor at Harvard Medical School who specializes in gynecologic cancer and survivorship. All the presentations will be on the website any day now, so check them out.
I attended the meeting with Carrie Corey, a former student of mine from Southern Methodist University who is living with metastatic disease. Diagnosed originally at 29, Corey learned she was metastatic early in 2012 and only weeks after she and husband Chris adopted their son. She has had successful treatment and at present the spots in her liver and bones are completely gone. She only has a few small spots remaining in her lungs. It was her first meeting of this type, and she was thrilled when other women would figure out she was the one who blogged for CURE magazine.
For Carrie, it was wonderful to hear other women who are classified "No Evidence of Disease" (NED). She also met other women her age who are doing well. At the first general session on Saturday morning, the moderator had them stand by the number of years since their metastatic diagnosis.
The winner has been living with metastatic disease for 18 years. She received a huge round of applause from women who want to be in her spot in another few years. These women and men represent the new category of survivor - those living with chronic cancer. Many will have long, durable remissions in their disease before it pops up again. What this group would like to see is more funding for research for metastatic disease specifically.
I was also moved by the men at the meeting. One of them, Peter Devereaux, a former Marine who was stationed at Camp LeJeune in North Carolina, spoke eloquently about living with metastatic disease.
For those of you who do not know about this issue, Marine and Navy personnel living at Camp LeJeune from 1957 until 1986 were exposed to water filled with chemicals that resulted in the largest cluster of male breast cancer in the country, as well as numerous cases of leukemia in children and children born with birth defects. You can read more about this at the website The Few, The Proud, the Forgotten. When I talked to Peter he said he had the best job in the world as a U.S. Marine and he is still proud to have served his country. He is also one of the first to get benefits for his cancer, something he and others have been fighting to receive for decades. In 2012, the Camp Lejeune Families Act was passed, which provides all kinds of support for those affected by what is now a Superfund site.RELATED POSTS
BY KATHY LATOUR | SEPTEMBER 17, 2013
I wasn't even finished with chemotherapy when I had my first panic attack brought on by the fear that my cancer had returned.
I had one round of chemo to go when I made a phone call to an acquaintance about the use of the fellowship hall at our church. It was one of those calls where we were trying to organize two events that were supposed to occur on the same day in the same place. In the middle of the discussion she yawned, just as I suppressed my own, and we both laughed. She said something to the effect that she didn't know why I was tired but she was going through chemotherapy for breast cancer and was exhausted all the time.
"Me, too," I gasped, as we forgot all about the meeting and began comparing stories. Seems she was dealing with a bit more of an issue than I was because her cancer was in her spine; she was metastatic, she explained, and yada, yada, yada. I didn't hear anything else after the word metastatic.
Within 24 hours my back was in spasms of pain – real pain. I was sure I was dying from metastatic breast cancer. Even though I could intellectually connect my pain with our conversation, the connection was soon lost. My pain was my recurrence that had nothing to do with having just talked to someone who had metastatic disease. I had pain in my spine; that meant my breast cancer had metastasized. I was dying.
As I write this today, 27 years since my diagnosis, I can almost feel the pain. It was so vivid.
I called my nurse, Becky, and told her about the pain in my back and asked that she schedule a bone scan. She did.
Two days later my husband and I went in for the results of the scan and what I was sure would be confirmation that my cancer was back in my spine.
We arrived at the doctor's office and Becky put us in a room. A few minutes later she must have remembered why we were there because she popped back in the room and said, "By the way, the scan was fine."
At that instant the room erupted. My poor husband hissed at me to never do that again. I hissed back that he should spend some time in my body. And Becky said, in the ultimate understatement, "You guys were really worried, weren't you?"
Worried, no; sure I was dying, yes.
A bit of explanation about what this fear does to a relationship such as ours. I was the information processor in the family. My role was the researcher. I knew the details on where to go and what to do, and when I said something, it was true. So my husband counted on me for information, and when I told him information about my cancer, he believed me. So, if I said I was dying, he believed me. This was a new world for both of us.
We went home, and I noticed somewhere between the doctor's office and home that the pain was gone. No one will ever tell me the mind and body are not connected.
I continued to deal with fear of recurrence almost weekly for the first year. My triggers were the usual: a strange ache or pain (ANY ache or pain), a celebrity was diagnosed, a friend was diagnosed or learned her cancer had metastasized. Actually, any mention of cancer by anyone usually sent me into hours of "what ifs."
Remember that part of what makes fear of recurrence so difficult is that pain is the symptom of a real recurrence. I also had strong anniversary reactions that resulted in panic attacks. Holidays would often bring on depression – would this be the last one I would spend with my child?
My worst fear was around Easter, and I have no reason why except it was spring and new life was all around, reminding me once again that mine could be shortened at any moment.
My fear of recurrence persisted for years. I decided I would do a Thelma and Louise before I ever allowed my family to see me wither and die should my cancer recur. Then I had a friend who died of breast cancer and, while not beautiful, it was a healthy death, and it made me reassess my decision about my own life and death.
Then about three years after my treatment ended, I finally couldn't bear the fear any longer. In my support group, we called it crash and burn. I cried all summer. I talked to the therapist who facilitated our support group about how to stop being so afraid.
Then she asked me a logical question: What was I afraid of? I knew it was all about my daughter Kirtley and her life. I didn't want to leave her without a mother. I knew my husband would be a good father, but I wanted to be there. I wasn't afraid of dying, I was afraid of leaving my daughter.
My therapist suggested I think of ways to resolve that. So, I enlisted friends who would take my place in the event of my death. My friend Terry would be there for her education, assisting with school choices and any education difficulties Kirtley might have. She would be hands on to help Kirtley with her school work and to talk to her about learning and keep the joy of learning alive. Terry ran a Montessori school, and she loved learning.
Terry, knew what I meant when I called, and, through my sobs, asked her if she would be Kirtley's education mom. She said she would, of course.
Next came household skills, cooking, sewing - all the things I have never been able to do, but wanted Kirtley to do. I called her Godmother Diana who could cook on all four burners at the same time. Diana can knit and sew and make all kinds of things. She too said, "Of course."
Next came my friend Dianne who was already raising two girls, one of them my god daughter Allison. Oh, the shopping trips they took and the fun they had. I had a miserable adolescence in a family where my mom wanted to make my clothes, and she loved bright colors and stripes. There was no money for the beautiful fashionable dresses, but I was determined that my daughter would dress in the latest fashion.
Dianne said yes, she would be sure Kirtley was dressed like all the other girls when she hit adolescence.
My friend SueAnn was to be her spiritual advisor, the one to answer the questions about our mission in life and spirit's plan for us. A Methodist minister, she assured me, she would be present for Kirtley should I not be here.
When I called these friends, none of them tried to reassure me or tell me I was going to live to be 100; they just agreed to take that part of Kirtley's parenting if I died. It was amazing what it did for me. I felt free and almost buoyant about death. I talked to my support group and the therapist. What did it mean? Was it a sign that I was going to die?
No, she explained, it just meant that I had resolved my own death. She had heard the same thing from others who had crossed the invisible line from fear of death to acceptance of death. Did I want to die? No. Was I more prepared to die? Yes.
Kirtley will be 28 this month, and she can't cook or knit, and she hates to shop, but we have had a few good discussions about the spiritual parts of life, and she made it through college.
And I am still here. No longer afraid of what the future may hold.RELATED POSTS
BY KATHY LATOUR | SEPTEMBER 5, 2013
September has been named Childhood Cancer Month and, while it's always hard to think about little kids getting cancer, they do, around 13,500 a year. The youngest patients often have leukemia and brain tumors, and to help these tiny patients there is a new video out starring Finn, a loveable puppet who talks about when he had cancer and going to the hospital and his nurse and doctor. A Boy Named Finn was created by KidsHealth,which has a website for children's health information. The Finn video is specifically aimed at preschoolers, whose ability to understand what is happening to them is often minimal. There are songs, dances and silly stuff throughout as Finn goes to the hospital for treatment, loses his hair and then goes back for follow-up.
The Finn Center on their site also has lots of extras to get the little ones involved in the story. There are coloring pages that can be printed off, a pattern to knit the hat Finn wears and suggestions for parents about talking to their kids about Finn's story. To find it you need to go to KidsHealth.org and then click on the parents tab and put The Finn Center in the search box. I am hoping they will make it easier to find soon.
We aren't told what kind of cancer Finn has, which allows it to be any kind for the children watching.
Another great event for this month comes from St. Jude Children's Research Hospital. St. Jude has established an ongoing follow-up study of its childhood cancer survivors to help understand the challenges they may face as they grow. This Saturday, September 7 at 9 a.m. CST the hospital is hosting a webcast about the late effects of cancer and its treatment.
Clearly this is for parents of young childhood cancer survivors and those older survivors of childhood cancer. It is estimated that there are 395,000 childhood cancer survivors living in the United States, many of whom may be unaware of the emerging information about late effects of treatment and how to prepare and ameliorate those effects. Watch for a story in the winter issue of CURE about the results of one of the largest follow-ups of childhood survivors from St. Jude. Also, they are always looking for their former patients to add to this study, so if you were treated at St. Jude, be sure to contact them.
The webcast will feature St. Jude survivors in a panel discussion, but survivors from all hospitals are encouraged to watch. Actor and survivor Hill Harper, who plays Dr. Sheldon Hawkes on the CBS drama CSI: NY, will speak about his journey. The webcast is free.
Update: You can access the archived St. Jude webcast here. An earlier version of this blog stated that 40,000 children receive a cancer diagnosis annually. In the U.S., about 13,500 children are diagnosed each year.RELATED POSTS
BY KATHY LATOUR | AUGUST 28, 2013
It can get really depressing when you work in cancer. And then you get an email that has a video with it, and you get re-energized that we are making progress and that there are good people working on what seem like impossible ideas that may work.
That's what happened when I opened the TEDxSeattle talk by Jim Olson (Project Violet), a pediatric oncologist at the Hutch in Seattle who has decided he wants to find a way to cure children's brain cancer before he retires. (To watch it, scroll down to the bottom of the page and click on the YouTube video.)
But it's more than his vision that grabbed me with his talk. It's his passion and optimism that it can be done. Of course, the only thing standing in the way is money.
As most of you know who have been around cancer for any length of time, researchers have to get grants to be able to set up labs, hire help and the myriad other requirements to research cancer. Sometimes they spend more of the year begging for money than they do researching. They are also restricted by the unwritten law that their idea can't be too far out of the box or different.
Susan Love, MD, the well-known breast surgeon, addressed this point last weekend when she spoke at the first National Women Survivor's Conference in Nashville. She explained how complicated it can be to get grant funding, so researchers have learned to research things that are already being researched with maybe a tweak or two. Anyone with a really far out idea (that may have efficacy) won't get funds. To try and get researchers away from using mice and rats, Love created the Army of Women where volunteers wh can sign up to take part in clinical trials. But more on that later.
Some may consider Dr. Olson's ideas far out. I don't know if people scoffed at his idea that the toxins from scorpion poison could be the basis for a kind of tumor paint that would light up cancer cells. Well, maybe. But the point is, he has an idea that mother nature may be a great source of some solutions in cancer. And I am guessing he didn't want to wait around years for a couple hundred thousand dollars when he needed a couple of million to accomplish his goal. So he did something different, he started a nonprofit and has gone on the road telling people about his ideas and asking them to give. They can even name a drug.
His biggest boost has come in the form of the TEDxSeattle video he did earlier this year, the one I saw, where he shows the scorpion technology to identify a brain tumor in a way that it shows up differently than healthy tissue to surgeons. Seems that when surgeons get to the margin of a tumor, it's really hard to tell where the cancer stops and the good grey matter begins. This means pieces of cancer can be left in a child's head to begin growing again.
Olson's creation, which he calls tumor paint, shows the surgeon where the tumor cells are to help get it all while keeping the healthy cells undisturbed. It's in the video and it's fascinating.
Think about the applications to other surgeries. Huge. But the tumor paint is only one of his ideas. With his team of young inspired researchers he is looking at other nature-inspired solutions. And to finance his research and to honor one of his young patients, Olson created projectviolet.org a nonprofit where we can go to donate and support specific drug development. There is a spider project in the works, as well as petunia, potato and horseshoe crab. It's based on the idea of "Citizen Science," which says that all of us can participate in the exciting breakthroughs that drug discovery offers. Science belongs to everyone.
At Project Violet you will also meet the real Violet, the little girl who moved Olson to walk around to collect himself before meeting her and her parents, knowing that her brainstem glioma was incurable.
Anyway, I'll let you decide for yourself if this man is inspirational. If you think so, pass this on. Oh, and if you go to YouTube to watch his talk, the Washington Research Foundation will donate $10 to Project Violet – up to $50,000. And the more views he gets, the more likely the talk will make it to the real Ted Talk platform.RELATED POSTS
BY KATHY LATOUR | AUGUST 23, 2013
This first of its kind convention for women cancer survivors got off to a "howdy y'all" start this morning in Nashville at the Gaylord Hotel.
Well it actually began last night with a pajama party, which had lots of women running around the hotel in sleepware of all kinds. A good time was had by all. The event, five years in the planning, is the brainchild of Karen Shayne, a Nashville marketing type and breast cancer survivor. It is offering the 750 or so attendees national speakers and breakout sessions on every topic imaginable.
This morning's keynote Shannon Miller debunked the idea that exercise would protect all women from all cancers. The Olympic gold medal gymnast from the 1996 games in Atlanta was diagnosed with ovarian cancer in 2011 and had one ovary removed before going through chemotherapy.
Her presentation was inspirational, especially for those younger women in the audience who lived with the fear that they would never have children. Miller gave birth to a daughter, Sterling, in June. It was her second child with husband John Falconetti. The couple already have a son, Rocco.
Miller called her daughter a miracle baby and went on to inspire the audience to believe in miracles too.RELATED POSTS
BY KATHY LATOUR | AUGUST 20, 2013
I had the privilege to attend a workshop at the Omega Institute last weekend where I joined a number of cancer survivors who were there to learn and there to present.
It reminded me of the power of community in the cancer journey. It also allowed me time to understand the lives and hopes and dreams of some very special people. When I speak, I usually arrive the day of the event and have a few hours at a luncheon to get to know the people before doing my show, One Mutant Cell. Then I catch a plane home.
This weekend I arrived on Friday and left on Sunday, which meant spending time with those who had come to take part in the Living Well with Cancer conference. Because Omega is in upstate New York, the majority of attendees were from the east coast, but as we all know, cancer does not recognize where you live or what you do. It is the great equalizer.
Because I served in the role of Weaver at the conference, I introduced the speakers and spent time with everyone at meals, watching as they became friends and found solace and support for their individual journey from someone else in the same place. There were a number of survivors with metastatic disease in the group, and they had time to talk about living in the strange limbo that is chronic cancer. Most came alone, but some had their caregivers with them, who it was clear were struggling as much as the ones with cancer. It is a new phenomenon that our caregivers in cancer are every bit as much survivors as we are. Studies show they may even experience more stress and anxiety than we do.
We heard from Dr. Jeremy Geffen, the creator of the seven levels of healing and a guru in the integrative cancer community. His program has now been adopted by more than 10 cancer centers in the United States. Dr. Geffen earned what he calls his last credential when he was diagnosed with a soft tissue sarcoma a few years ago.
We learned writing can heal with breast cancer survivor Sharon Bray, and were entertained by Scott Burton, juggler of strange objects including osteosarcoma. Carolyn Kortge, a survivor of breast cancer, engaged us in spirited walking,and Sandra Gilbert introduced a kind of yoga that is healing and designed for us, meaning it can be done in a chair and does not require major exertion but focuses on breathing: the most important part of yoga. Sandra is now with the Vanderbilt cancer center in Nashville where she will bring her special brand of healing to their integrative program.
This all occurred in the bucolic setting that is Omega. Nestled outside the village of Rhinebeck, Omega offers workshops and conferences on a variety of areas where we all occasionally need help: mindfulness, healthy living, artistic creativity, and so much more. Check it out.
But most of all it was the connection with each other that took us to a new place of healing during the weekend. I spent time with Kathleen, who is living with metastatic colon cancer. She is also a writer and blogger who has offered one of her creations as a gift for you. Enjoy. And do not forget to connect.RELATED POSTS