Yesterday, I went to see a new doctor about my wound. I left the office with flashbacks of the past year. The agonizing pain and the fear of cancer claiming my life. After the visit, my friend tried to make sure I could lay down comfortably with my legs propped up. She asked me if I had a chance to cry. I said that I really wanted to cry but just couldn't. I couldn't cry the whole day yesterday. It felt like I have a full cup of tears ready somewhere behind my eyelids to runneth over. But nothing has been spilled yet.
I like my doctor. He's better than the overzealous one in Maryland. He was open and honest. He spent a good amount of time with me to discuss everything and plus treat the wound. Upon examining the wound (aka the former hole), he found that the innermost edge has not fully healed. The rest of it healed nicely. He decided to apply silver nitrate to that edge. That burnt! I was in shock afterwards by how it hurt that I became nauseous and lightheaded. They gave me pain medication to take orally on the spot. I also have two types of ointment to apply to the wound to help minimize the pain and promote healing. I am back in four weeks to see if it worked. Upon reading the forum that I used to help me heal from the surgery last October, I learn that some people need just one silver nitrate treatment while some others need several rounds. Ugh.
I noticed that one of the forms I was filling out had a checklist to be completed by the doctor. The checklist was a list of red flags for the Lynch Syndrome. I had one red flag... endometrial cancer before the age of 50. The doctor explained that the Lynch Syndrome is a type of genetic condition that has a high risk of colon cancer. Those with Lynch Syndrome also has high risk of getting endometrial cancer- this is very common. They also have risk of getting other cancers: ovarian, stomach, small intestine, liver, urinary, brain, and skin. He asked if I had genetic testing done. Doctor after doctor the past year has asked me the same. Dr. Diaz-Montes said her pathologist did genetic testing of my cancer cells and that I tested negative. Dr. Jewell said genetic testing was done as well and it was negative. What remains unclear at this time is what type of genetic testing was done and what was specifically tested. The doctor yesterday asked if I was tested for the Lynch syndrome. I did not know. He had me sign a release form for Memorial Sloan Kettering Cancer Center to send my records to him to review. If I haven't been tested for Lynch Syndrome, then I will be tested for that.
In the support group meeting last week, someone was talking about how it feels like there's always something else. I could relate to that yesterday. I started thinking, "What if...", "What should I do?", "What is gonna happen to me?" Yada yada. I decided that I couldn't allow the flashbacks of fearing for the worse consume me. I laid down and meditated for about an hour. The only thing I can do at this time is to focus on helping the wound heal and continue living my life. I will hear back from the doctor about the next steps and deal with one thing at a time.
Saturday, February 27, 2016
Thursday, February 18, 2016
The Different Meanings of Survivorship
I spent some time at the Memorial Sloan Kettering Cancer Center last Tuesday for my follow-up visit with Dr. Jewell and attended my support group meeting. I noticed that Dr. Jewell used the word survivorship to mean one thing then later that day, the social worker who facilitates the support group used the word to mean a different thing. I have heard a third definition as well. I asked the social worker why. She said it's all different to service providers. From the medical perspective, survivorship begins after two years of "no evidence of disease (aka NED)" status. Dr. Jewell earlier that day I have not begun that yet. If I am still NED by May 2017, then I'll begin the survivorship phase. For survivorship support groups and programs, survivorship begins once all treatments have ended. That's why I am in the Gynecologic Cancer Survivorship Support Group. The focus is on moving forward from the treatments. For centers that offer programs and resources to cancer patients and survivors such as Annapolis Wellness House and Gilda's Club of NYC as well as therapists, they believe that survivorship begins the day you get diagnosed. It becomes a matter of surviving each day. My take on those definitions... those represent different parts of my whole ride. I began surviving on the day I got my diagnosis: January 15, 2015. Then I was done with treatments May 12, 2015. My doctor said the cancer was gone on April 14, 2015 but the surveillance program began August 17, 2015. To me, survivorship also means moving forward with my life.
I am growing to appreciate what New York City has to offer. I was thrilled to have had more time this visit to explore the city. I was able to try out some recommended eats by locals. I was in a foodie heaven. I loved walking around the city even in the pouring rain as I trekked across the Central Park from the Upper East Side (MSKCC's main hospital) to the Upper West Side. I took a challenging yoga class. I am somewhat sad that the next appointment in May will more likely be my last trip to New York City. I suppose I have to find another reason to visit the Big Apple. I think part of the reason why I have grown fond of the city is because the city played a big role in my cancer ride. If the May visit is my last one, I will make sure I make the absolute best of that visit.
Dr. Jewell was so happy to see I was doing so well. I looked so different and much better. It was a matter of making some major changes in my life. I told her that I had been reassessing the quality of my life for a long while and I was determined to make some positive changes. And I did. She told me that whatever I am doing, I need to keep it up. A healthy, happy life could help keep the cancer away. She examined all of my surgical incisions and noted I was healing beautifully. The wound (hole) looks good as well but I would need to work with a different surgeon to monitor that for a while longer. I will be finding a surgeon in my new city. She said she knew a couple of top gynecologic oncologists in the country who were based in my home area which was reassuring. She said she would send me the list of names and I can read up on those doctors. We both agreed to make May the last visit. After the May visit, I would have completed a full year of surveillance program with Dr. Jewell and my new oncologist can continue.
The support group meeting was useful as usual. I said less. I sat there quietly absorbing all that was said. A new member joined the group. She had endometrial cancer as well. I was fascinated to learn about her journey. Her journey was different from mine. She was at stage 1B, grade 3 (the cancer got inside the walls of her uterus) and went through just three chemotherapy and three radiation treatments. I was at stage 1A, grade 1 (the cancer was contained inside the lining of the uterus). I told her I just went through hormone therapy and surgery. The group talked about the aftermath of chemotherapy treatments, which I was unable to relate to but I was the only one to deal with post-op infection complications. We realized that we all experienced the same aftermath: low energy levels, sickness, etc. The group discussion was getting heavy then someone said something funny. We all laughed. It also was the final point of our meeting. The social worker said it was a good thing to end with a laugh.
The social worker gave us all an assignment for next month. We had to find something new that made us laugh. I did find laughter earlier that day before the support group meeting. I was laughing hysterically over a great conversation I had with someone via iMessage. But I needed to find something new. I have been laughing a lot more the past few weeks. It's a nice change, actually. I am not worried about this assignment. I will find something. Or rather the universe will provide and I shall receive.
I am growing to appreciate what New York City has to offer. I was thrilled to have had more time this visit to explore the city. I was able to try out some recommended eats by locals. I was in a foodie heaven. I loved walking around the city even in the pouring rain as I trekked across the Central Park from the Upper East Side (MSKCC's main hospital) to the Upper West Side. I took a challenging yoga class. I am somewhat sad that the next appointment in May will more likely be my last trip to New York City. I suppose I have to find another reason to visit the Big Apple. I think part of the reason why I have grown fond of the city is because the city played a big role in my cancer ride. If the May visit is my last one, I will make sure I make the absolute best of that visit.
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| View of the Empire State Building from the Flatiron neighborhood |
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| The Prospect Park in Brooklyn |
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| View of the Upper West Side from the Central Park-Manhattan |
The support group meeting was useful as usual. I said less. I sat there quietly absorbing all that was said. A new member joined the group. She had endometrial cancer as well. I was fascinated to learn about her journey. Her journey was different from mine. She was at stage 1B, grade 3 (the cancer got inside the walls of her uterus) and went through just three chemotherapy and three radiation treatments. I was at stage 1A, grade 1 (the cancer was contained inside the lining of the uterus). I told her I just went through hormone therapy and surgery. The group talked about the aftermath of chemotherapy treatments, which I was unable to relate to but I was the only one to deal with post-op infection complications. We realized that we all experienced the same aftermath: low energy levels, sickness, etc. The group discussion was getting heavy then someone said something funny. We all laughed. It also was the final point of our meeting. The social worker said it was a good thing to end with a laugh.
The social worker gave us all an assignment for next month. We had to find something new that made us laugh. I did find laughter earlier that day before the support group meeting. I was laughing hysterically over a great conversation I had with someone via iMessage. But I needed to find something new. I have been laughing a lot more the past few weeks. It's a nice change, actually. I am not worried about this assignment. I will find something. Or rather the universe will provide and I shall receive.
Sunday, February 14, 2016
Gynecologic Oncology
Skin healing is tricky, especially with the hole I had. I learned yesterday one small part of the wound has torn open. I noticed that I started to bleed last Wednesday then I was draining again. It was hurting to sit. I immediately treated it with an antibiotic ointment. The draining stopped and the pain that came with sitting slowly went away. I have been conscious about the type of chairs I pick the past few days. The person who examined the wound yesterday gave me a lecture about how I need to keep on applying ointment on it and sit on my little travel pillow if any seat feels uncomfortable. I got annoyed and said, "I AM DONE!" She said that for something so tender like the scar especially in that area, I need to keep up to ensure full recovery. So... use antibiotic ointment for one week then it's back to alternating between castor oil and comfrey salve applications for a good while along with more epsom salt baths. She also reminded me that I went from not working out to working out seven days a week. I need to be tender to that part of my body and be a bit more patient. Okay, I can do that. I am grateful that I have been able to return to my active lifestyle though. My energy levels are returning. I just hope that the wound is 100% better soon!
Last night I had a conversation with a guy who has been working in the field of medicine for a long time. He was curious about why I was going to New York City today. I told him I was going back for my follow-up appointment. He asked why I didn't find a local oncologist yet. I explained that it's hard for me to find a gynecologic oncologist that I can trust. I was so happy I found Dr. Jewell so I feel really loyal to her. He suggested that I could ask her if she had recommendations for a local gynecologic oncologist for me to do my follow-up vistis. I will be doing that when I see her. I told him about how gynecologic oncologists are different from other oncologists. Gynecologic oncologists begin training in obstetrics and gynecology. Their four-year residency is in obstetrics and gynecology as well. If they want to specialize in gynecologic oncology, then they need to get additional training. Through my informal research the past year, I have learned that type and length of training in gynecologic oncology vary. Oncologists, on the other hand, train in oncology and then do residency in oncology. The guy I was talking with was surprised by this tidbit of information. The inconsistency in training and experience impact how gynecologic cancer patients are treated. I explained further that I have met women whose gynecologic oncologists do not require them to follow the typical surveillance schedule when the cancer is in remission. The typical surveillance schedule: first two years- every three months. The next two years- every six months. Fifth year and beyond: every year. I have spoke with women whose gynecologic oncologists told them not to come back for two years after the cancer has been treated. I met one woman whose gynecologic oncologist told her that since her reproductive system was out, she was fine and didn't need to come back for tests for the rest of her life. Some gynecologic oncologists don't do pap smears once the cervix has been removed. Pap smears are needed to check for vaginal and vulvar cancers. One of the women who did not get checked for two years did have the cancer come back and it has metastasized. Scary. Yes, the tests are annoying. And going every three months feels too much. I do it because it's better safe than sorry. At the end of the conversation, he asked me which medical center I was going to in New York City. I said, "Memorial Sloan Kettering Cancer Center." He immediately understood why I am not ready to switch gynecologic oncologists just yet stating that they do great work there. Yep.
Since I just moved and am getting settled in my new city, I wasn't ready to find a new gynecologic oncologist this soon. I will begin by asking Dr. Jewell if she knows of anyone qualified here. Next, I will research all the gynecologic oncologists here, learning about their training and experience. Then I will find out their recommended surveillance schedule and procedure to see if they would be able to pick up on what Dr. Jewell started.
Last night I had a conversation with a guy who has been working in the field of medicine for a long time. He was curious about why I was going to New York City today. I told him I was going back for my follow-up appointment. He asked why I didn't find a local oncologist yet. I explained that it's hard for me to find a gynecologic oncologist that I can trust. I was so happy I found Dr. Jewell so I feel really loyal to her. He suggested that I could ask her if she had recommendations for a local gynecologic oncologist for me to do my follow-up vistis. I will be doing that when I see her. I told him about how gynecologic oncologists are different from other oncologists. Gynecologic oncologists begin training in obstetrics and gynecology. Their four-year residency is in obstetrics and gynecology as well. If they want to specialize in gynecologic oncology, then they need to get additional training. Through my informal research the past year, I have learned that type and length of training in gynecologic oncology vary. Oncologists, on the other hand, train in oncology and then do residency in oncology. The guy I was talking with was surprised by this tidbit of information. The inconsistency in training and experience impact how gynecologic cancer patients are treated. I explained further that I have met women whose gynecologic oncologists do not require them to follow the typical surveillance schedule when the cancer is in remission. The typical surveillance schedule: first two years- every three months. The next two years- every six months. Fifth year and beyond: every year. I have spoke with women whose gynecologic oncologists told them not to come back for two years after the cancer has been treated. I met one woman whose gynecologic oncologist told her that since her reproductive system was out, she was fine and didn't need to come back for tests for the rest of her life. Some gynecologic oncologists don't do pap smears once the cervix has been removed. Pap smears are needed to check for vaginal and vulvar cancers. One of the women who did not get checked for two years did have the cancer come back and it has metastasized. Scary. Yes, the tests are annoying. And going every three months feels too much. I do it because it's better safe than sorry. At the end of the conversation, he asked me which medical center I was going to in New York City. I said, "Memorial Sloan Kettering Cancer Center." He immediately understood why I am not ready to switch gynecologic oncologists just yet stating that they do great work there. Yep.
Since I just moved and am getting settled in my new city, I wasn't ready to find a new gynecologic oncologist this soon. I will begin by asking Dr. Jewell if she knows of anyone qualified here. Next, I will research all the gynecologic oncologists here, learning about their training and experience. Then I will find out their recommended surveillance schedule and procedure to see if they would be able to pick up on what Dr. Jewell started.
Wednesday, February 3, 2016
World Cancer Day: The Need to Raise Awareness
Tomorrow is the World Cancer Day (http://www.worldcancerday.org/about). Wear purple to raise awareness about all kind of cancers. Last year, a dear friend posted on her Facebook wall on February 4th that she was wearing purple on World Cancer Day in my honor. I did not know it was the World Cancer Day. Before getting diagnosed with cancer myself, cancer was something I did not want to deal with. I felt saddened for those who got cancer but it was something I did not want to know about. You could call that denial. You could call that a chosen oblivion. I did not want to learn more about cancer nor did I want to think about it. A breast cancer survivor friend told me last year, "Welcome to learning about stuff you did not want to learn... but you need to."
When I saw that Facebook post by my friend on the morning of February 4th, I decided to put on a purple shirt. I still did not know much about cancer, let alone my own cancer. The lesson I learned from February 4, 2015 is that knowledge is gained through your own pursuits. Knowledge is not a given. You are absolutely in charge. On February 4th, I was frustrated that I still had so many unanswered questions. And that answers had to be obtained from the medical experts. I am a die-hard researcher and I like to search for answers on my own. I was ready to investigate online upon learning my type of cancer: "Invasive well differentiated endometrioid type adenocarcinoma FIGO Grade 1". Many people advised me not to research online because there were a lot of scary information online. True. I avoided Google the first few days and then started. I came across scary information. I saw a YouTube video by an extremist organization against hysterectomies that explains that a hysterectomy would take away the woman's ability to feel emotions such as love and tenderness. Now that I have had the hysterectomy, this seems ridiculous. Still, I was very vulnerable and swimming through the land of unknown at that time so anything seemed possible. I read some horror stories about women whose hysterectomies went wrong and their vaginas were defective permanently. I decided to give up on the Internet. I did not want to research and come across those horror stories that kept on making me burst into tears and feeling like I would rather let the cancer win. It was difficult to filter through the search results. I decided to consult the medical experts. The first oncologist did not give me much to work with other than the general statement that they knew I had endometrial cancer and that she wanted to put me under the knife to remove everything. The second oncologist, who I met with on February 4th, did not give me anything. This experience made me wonder what cancer patients are to do if they are advised to avoid the Internet and do not have oncologists who do not take the time to go into great detail about their type of cancer, prognosis, and treatment options. It took me 2.5 weeks to swim in my own despair of not knowing anything before I decided to find a different oncologist. I researched online for the best cancer centers in the country and decided on Memorial Sloan Kettering Cancer Center. I am forever grateful because my oncologist took the time to explain everything to me, including drawing pictures and sharing the latest research on treatment options for my type of cancer. Nurses routinely answered all my questions via email. Social workers offered countless resources. Sadly, many people do not have that option. They are usually stuck with the oncologists available to them who do not supply them with enough knowledge to help them make the right choices for their treatment. Then there's the big, bad Internet which contain some false information. What are cancer patients to do to arm themselves with the right information? I am not sure. My strategy was to keep on shopping for the right oncologist and fortunately, that worked out for me. I believe that we need to know more about cancer, even if we don't have cancer. We need to know where to go to for the right kind of information, not the type that are designed to scare people. How do we begin? I have started by talking with newly diagnosed cancer patients, telling them I do get it. And I try my best to give them the information and resources they should know. I offer to answer any questions they may have. I am no expert but I put in an effort because I do not want them to breakdown like I did last year, with wrong information. If you do not feel you have the right information, encourage them to talk with others who may be able to help. I have told people that I am happy to talk with others. The bottom line... the more we know, the better we can support those who are dealing with cancer.
When I saw that Facebook post by my friend on the morning of February 4th, I decided to put on a purple shirt. I still did not know much about cancer, let alone my own cancer. The lesson I learned from February 4, 2015 is that knowledge is gained through your own pursuits. Knowledge is not a given. You are absolutely in charge. On February 4th, I was frustrated that I still had so many unanswered questions. And that answers had to be obtained from the medical experts. I am a die-hard researcher and I like to search for answers on my own. I was ready to investigate online upon learning my type of cancer: "Invasive well differentiated endometrioid type adenocarcinoma FIGO Grade 1". Many people advised me not to research online because there were a lot of scary information online. True. I avoided Google the first few days and then started. I came across scary information. I saw a YouTube video by an extremist organization against hysterectomies that explains that a hysterectomy would take away the woman's ability to feel emotions such as love and tenderness. Now that I have had the hysterectomy, this seems ridiculous. Still, I was very vulnerable and swimming through the land of unknown at that time so anything seemed possible. I read some horror stories about women whose hysterectomies went wrong and their vaginas were defective permanently. I decided to give up on the Internet. I did not want to research and come across those horror stories that kept on making me burst into tears and feeling like I would rather let the cancer win. It was difficult to filter through the search results. I decided to consult the medical experts. The first oncologist did not give me much to work with other than the general statement that they knew I had endometrial cancer and that she wanted to put me under the knife to remove everything. The second oncologist, who I met with on February 4th, did not give me anything. This experience made me wonder what cancer patients are to do if they are advised to avoid the Internet and do not have oncologists who do not take the time to go into great detail about their type of cancer, prognosis, and treatment options. It took me 2.5 weeks to swim in my own despair of not knowing anything before I decided to find a different oncologist. I researched online for the best cancer centers in the country and decided on Memorial Sloan Kettering Cancer Center. I am forever grateful because my oncologist took the time to explain everything to me, including drawing pictures and sharing the latest research on treatment options for my type of cancer. Nurses routinely answered all my questions via email. Social workers offered countless resources. Sadly, many people do not have that option. They are usually stuck with the oncologists available to them who do not supply them with enough knowledge to help them make the right choices for their treatment. Then there's the big, bad Internet which contain some false information. What are cancer patients to do to arm themselves with the right information? I am not sure. My strategy was to keep on shopping for the right oncologist and fortunately, that worked out for me. I believe that we need to know more about cancer, even if we don't have cancer. We need to know where to go to for the right kind of information, not the type that are designed to scare people. How do we begin? I have started by talking with newly diagnosed cancer patients, telling them I do get it. And I try my best to give them the information and resources they should know. I offer to answer any questions they may have. I am no expert but I put in an effort because I do not want them to breakdown like I did last year, with wrong information. If you do not feel you have the right information, encourage them to talk with others who may be able to help. I have told people that I am happy to talk with others. The bottom line... the more we know, the better we can support those who are dealing with cancer.
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