When it was decided that there would be a party for me to say EFF to cancer back in March 2015, the idea behind "Eff Cancer" did not have such a deep meaning then. Now it has a more profound meaning for me. Cancer truly sucks. I feel like screaming at the top of my lungs, "EFF CANCER!" Here's why.
I remember when I first got diagnosed in January 2015, I met a few people online and heard of people who got their diagnosis around the same time. We connected because we were new cancer warriors trying to figure out what the heck it all meant. They had different cancers. Two weeks later, one of them died. Over the course of the past year, they all have died. I am not sure if I should feel lucky or not. This feeling of uncertainty is exactly how I felt when my company laid off two administrators during my first year of employment. I was the new kid on the block and I still kept my job. I remember I had a bad case of survivor guilt. Do I feel lucky I still had my job? Do I wonder if I would be the next to get axed? I am still with the same company for almost eight years. That feeling has faded but came right back when additional layoffs were made last year.
Anyway... it breaks my heart every single time I hear about another cancer warrior passing on to the next realm. This week, this world lost a wonderful cancer warrior who was battling breast cancer for six years. She was a friend from my childhood. I spoke with her last year asking her for her insight. I noticed that she had cancer when she was pregnant with her son. At that time, I was not sure if I should consider having a baby or not. My conversation with her helped shift me towards the hysterectomy. When I got the news of her passing, I was so sad then I got so angry for her and other cancer warriors. Why didn't they get the chance of more time I was given? It's not fair. I was thinking, "EFF CANCER!" Cancer really sucks. I am tired of hearing about more and more lives being claimed by the big C. Talking about it throughout the week has simmered my anger. Going to kickboxing classes twice this week have helped me channel my anger as I visualized myself kicking the big C's arse and thinking, "Stop taking away lives!" Doing long, advanced yoga classes settled me. Down deep inside, I have this bugging fear that maybe I am the next one just like wondering if I would be the next one to get that dreaded pink slip.
One of the most powerful books I have ever read is The Power of Now by Eckhart Tolle. I read it about the same time I became fascinated with Buddhist teachings. Among many Buddhist themes that fascinate me, I love how Buddhism placed an emphasis on focusing on the present rather than the past and the future. Just be. Just live in the moment. And be happy with the present moment. It was timely that I came across Tolle's book when I was starting my Buddhist readings. I think our society places so much emphasis on the past and future, ignoring the present. The past and future are hugely influential on what one does in the present moment. It is so hard to deprogram myself from thinking / acting as if the future or the past is in this specific moment. Ironically, having cancer has made the deprogramming much easier. I am given this moment and I am going to roll with it. I don't want to worry about the future. I do not want to wonder when the big C would take me next. I am going to live my life focusing on each present moment.
Some of my friends asked me for the update on my genetic test results and Dr. Jewell's recommendations. Truthfully, I temporarily put the genetic test results aside so I can focus what I needed to do in the present. I had a draft manuscript due to the editors June 1st. I had plenty of work on my plate. I had a wedding celebration to attend. I chose to focus on those things because those were happening in my present time. I still need to live my life and not let the genetic test results hinder me. Now that the draft manuscript has been submitted and I enjoyed the wedding celebration, I have some breathing room. I will be following up with Dr. Jewell to see what the genetic team at Memorial Sloan-Kettering Cancer Center told her since I haven't heard anything. When I get that information from them, I am going to put them aside until I meet with my new oncologist in August. Then I'll go from there. Remember, having a cancer gene does not mean you have cancer. It just elevates your risk of getting cancer. That is one critical piece of information that has been keeping me sane.
For now, I shall just savor the sweet moments in the present. Like waking up this morning to Chocolate's head resting on my shoulder. And discovering how amazing my cilantro pesto is, which was a fun experiment in the kitchen this week (I ended up with too much cilantro- is that even such a thing?). And laughters with new friends. Onward.
Saturday, June 4, 2016
Sunday, May 22, 2016
Memorial Sloan-Kettering Cancer Center: A Closed Chapter
I made my final trip to New York City last week to see Dr. Jewell for the last time. I decided to extend my trip a bit longer because I wanted to experience New York City a bit more after having discovered that I grew to love the city. I stayed for four days. When I first started going to New York City last year, I remember being very resistant to the idea of the city. I have come to find that it is a wonderful place to visit. While I was walking to the subway station from an evening yoga class, I was actually toying with the idea of living there. I could imagine myself there. I love the walks in the city. I love the parks. It's a foodie's paradise. Yoga classes are great there. There are great outdoor art. There's always something happening. I loved sitting in cafes as I wrote. People-watching is the thing to do. I am glad I grew to love the city because I would definitely find another reason to visit! I am just relieved it's not the cancer center that is getting me there. Maybe it will be to visit a friend, to catch a show, or simply why not?
I had such anticipation for my final appointment and final in-person appearance at my support group meeting. It was strange to go back to a familiar place to deal with many unfamiliarities. My regular interpreters were not available. I was sad. My regular interpreters were not available for neither the appointment nor the support group meeting. I had to orient the interpreters and it was not something I wanted for my last visit. I also hoped to thank my regular interpreters for being there the whole way.
Dr. Jewell seemed a bit disappointed that I was no longer seeing her even though she recommended that I do so. I have found a new oncologist, Dr. Angel, in my new town and will begin working with her in August. Dr. Jewell said that rules have changed and those in remission from endometrial/ uterine cancers no longer have to do pap smear every three months. It is required annually. She said that I still have to do vaginal, pelvic, and rectal exams every three months for one more year to make sure there are no tumor growths in my vagina and pelvis. This change of rules surprised me and was something I discussed with my Gynecologic Cancer Survivors support group later that day. Other survivors said that they have heard of such rules but as one woman said her cancer showed up without any symptom or indication of tumor growth. I was advised to advocate for myself and ask for pap smears more often. Early detection is key. I am going to see what Dr. Angel says.
I am still processing my genetic test results as well as learning more about genetics. I will be doing a separate blog post about my genetic test results once I have grasped the information. Genetics are definitely complicated. I felt Dr. Jewell was abrupt and reactive to my genetic test results when she suggested that I play safe and have my ovaries and breasts removed. I was thrown off by her suggestion because her recommendation conflicted with the genetics lab and genetic counselor's recommendations that I keep up with my surveillance plan plus monitor my breasts and ovaries. I was feeling deflated after the appointment. They certainly cut out a lot from me... tubes, uterus, cervix, a chunk of skin, and now they want to take my ovaries and breasts away. That felt too extreme. I know it takes time to recover from a major surgery. An infection on the top of it didn't help. I am almost back to where I was before cancer. I do not want to go under the knife for a long time. Dr. Jewell could sense my resistance and she said maybe she does not know enough about my genetic test results. She said she would consult with the cancer center's Genetics Team by sharing my results with them to see what medical management recommendations they have. I am still waiting to hear back from Dr. Jewell and the outcome of that consultation. I am going to see what Dr. Angel has to say about my genetic test results as well. I have to tell myself again and again that having cancer genes do not mean you can get cancer. It just means the risk is elevated as compared to the risk for the general population.
It was bittersweet to attend the support group meeting in-person for the last time. I will continue to participate remotely since it has worked out nicely. I do not have to be a patient there to continue participating in the support group meetings. A new member joined the group and she was a young woman who just survived endometrial cancer as well. It was sad to see someone younger than me but I was glad to meet someone who knew what I went through. She spoke of her struggles over losing the ability to bear a child. It was all too familiar to me. The group discussed in depth particularly about advocating for what is best for ourselves not what the doctors think. That was helpful for me in light of my genetic test results.
I left New York City Wednesday morning closing the chapter on the regular visits to Memorial Sloan-Kettering Cancer Center. Despite dealing with cancer, it was the trips to MSKCC that made me grow to love New York City. That was definitely a blessing in disguise. I'll be back, Big Apple!
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| The Boathouse at the Prospect Park (Brooklyn) |
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| Since watching the "Kate and Leopold" movie, I have always wanted to walk across the Brooklyn Bridge. I was happy to make it happen. |
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| The Rockfeller Outpatient Pavilion on 53rd Street and 3rd Avenue. This is where I saw Dr. Jewell on 6th floor for appointments, scans, and tests. The surgery took place in the main hospital on 67th Street and York Avenue. |
I am still processing my genetic test results as well as learning more about genetics. I will be doing a separate blog post about my genetic test results once I have grasped the information. Genetics are definitely complicated. I felt Dr. Jewell was abrupt and reactive to my genetic test results when she suggested that I play safe and have my ovaries and breasts removed. I was thrown off by her suggestion because her recommendation conflicted with the genetics lab and genetic counselor's recommendations that I keep up with my surveillance plan plus monitor my breasts and ovaries. I was feeling deflated after the appointment. They certainly cut out a lot from me... tubes, uterus, cervix, a chunk of skin, and now they want to take my ovaries and breasts away. That felt too extreme. I know it takes time to recover from a major surgery. An infection on the top of it didn't help. I am almost back to where I was before cancer. I do not want to go under the knife for a long time. Dr. Jewell could sense my resistance and she said maybe she does not know enough about my genetic test results. She said she would consult with the cancer center's Genetics Team by sharing my results with them to see what medical management recommendations they have. I am still waiting to hear back from Dr. Jewell and the outcome of that consultation. I am going to see what Dr. Angel has to say about my genetic test results as well. I have to tell myself again and again that having cancer genes do not mean you can get cancer. It just means the risk is elevated as compared to the risk for the general population.
It was bittersweet to attend the support group meeting in-person for the last time. I will continue to participate remotely since it has worked out nicely. I do not have to be a patient there to continue participating in the support group meetings. A new member joined the group and she was a young woman who just survived endometrial cancer as well. It was sad to see someone younger than me but I was glad to meet someone who knew what I went through. She spoke of her struggles over losing the ability to bear a child. It was all too familiar to me. The group discussed in depth particularly about advocating for what is best for ourselves not what the doctors think. That was helpful for me in light of my genetic test results.
I left New York City Wednesday morning closing the chapter on the regular visits to Memorial Sloan-Kettering Cancer Center. Despite dealing with cancer, it was the trips to MSKCC that made me grow to love New York City. That was definitely a blessing in disguise. I'll be back, Big Apple!
Tuesday, May 3, 2016
The Waiting Game Re-visited
The universe can be weird sometime. A few hours after I posted my latest update yesterday about being fearless, I got a call from the genetic counselor. Fear was thrown right in my face and I felt scared all over again. I thought the purpose of that call was to discuss a potential battle with the insurance company to cover the cost of genetic testing. Nope. She had the results already. I was surprised by how fast it took. I was more shocked that my insurance company did not even turn it down, considering how much I have fought against them to cover the medical expenses in 2015. She said I had to come in to discuss the results. Ahem. When I first met with her four weeks ago, she explained that if there was a negative result she would call me and tell me over the phone. If it's either positive or uncertain variant, I would have to come in to discuss. That phone call was a blur for me. I was more prepared for the potential news that my insurance company denied the claim. I was not prepared for this. I caught the following words, "variance..." and "too complicated to discuss over the phone..." I scheduled the appointment for Thursday, May 12th. It was the next available appointment. While I dreaded waiting for ten days before learning more, I am used to the waiting games that come with dealing with cancer.
I remember detesting the waiting game between the first phone call with the cancer diagnosis and the first meeting with oncologist #1. And then I left that appointment without information I needed (no interpreter). And then oncologist #2. Nil. I waited six weeks before getting all the information from oncologist #3 to fully understand my treatment options. During that period, there were several tests. I remember waiting anxiously for results for each test. I waited two weeks after my surgery to learn of the stage. This latest waiting game feels too familiar to me but I am coping better this time around. I immediately pushed myself to continue with my routine even though I did not feel like it. Keeping myself busy has significantly helped the past 24 hours and will continue to help me until I meet with the genetic counselor. A massage appointment this evening was a treat as well. Amazingly, I was able to quiet my own mind during the massage and just be in the moment.
Last night I recalled the recurring discussions in my support group about how it is so easy to get scared whenever something comes up, wondering if the cancer is coming back to haunt us. I could relate to that last night. I was wondering... what other cancers do I have? And of course my imagination went wild, scaring me more and more. Then I had to remind myself that the genetic test just communicates what cancer risks I have. Preventive measures can be taken. I re-read the packet of information that the genetic counselor gave me. "Hereditary cancer" is repeatedly mentioned. Maybe I have the type of cancer that is hereditary. I'll find out on May 12th.
I remember detesting the waiting game between the first phone call with the cancer diagnosis and the first meeting with oncologist #1. And then I left that appointment without information I needed (no interpreter). And then oncologist #2. Nil. I waited six weeks before getting all the information from oncologist #3 to fully understand my treatment options. During that period, there were several tests. I remember waiting anxiously for results for each test. I waited two weeks after my surgery to learn of the stage. This latest waiting game feels too familiar to me but I am coping better this time around. I immediately pushed myself to continue with my routine even though I did not feel like it. Keeping myself busy has significantly helped the past 24 hours and will continue to help me until I meet with the genetic counselor. A massage appointment this evening was a treat as well. Amazingly, I was able to quiet my own mind during the massage and just be in the moment.
Last night I recalled the recurring discussions in my support group about how it is so easy to get scared whenever something comes up, wondering if the cancer is coming back to haunt us. I could relate to that last night. I was wondering... what other cancers do I have? And of course my imagination went wild, scaring me more and more. Then I had to remind myself that the genetic test just communicates what cancer risks I have. Preventive measures can be taken. I re-read the packet of information that the genetic counselor gave me. "Hereditary cancer" is repeatedly mentioned. Maybe I have the type of cancer that is hereditary. I'll find out on May 12th.
Monday, May 2, 2016
"Fearless is the new pretty"
That is a quote that my friend and I noticed on a chalkboard in a cute boutique in town. We were walking in a cute shopping district on the evening before she returned home to California wrapping up a wonderful long weekend celebrating the fact I've been in remission for a year.
A fellow endometrial cancer survivor made the recommendation that I celebrate every year by taking a trip. I thought that was a nice way to celebrate life. I have heard from other cancer survivors about how they celebrate. The date I got news that I was in remission was April 14, 2015. I was not done with the wild, medical ride until much later though. But I can assert that I am relieved that the major surgery got rid of the cancer.
My friend and I went to Canada to celebrate. We were celebrating her engagement as well! I'm excited to see her get married in September. I had this itch to do something absolutely crazy. I asked her if she was up to it. She was nervous because of her fear of heights. Later on, she said that she wouldn't have gone if she knew about my tendency to do crazy things. I have skydived twice. I have gone ziplining. I have gone paragliding. I swam from Alcatraz to San Francisco. I have taken trapeze lessons. I have done more crazy things. The Edgewalk was the next crazy thing to do. I am glad I did not tell her! The Edgewalk at the CN Tower in Toronto. And it was mind-blowing to go out on the edge of a tall tower and walk along the edge. It was scary. I did not like leaning forward but felt comfortable with leaning backwards.
While I was walking along the edge, I was remembering the battle with cancer and infection. I did not choose that ride. I choose to walk over the edge but I did not choose that medical roller coaster. I was thrown on that ride and dealt with it a day at a time. And I did it.
Someone asked me a few days after the Edgewalk why I keep on doing crazy things. I said that I noticed that as I grow older, my fear grows. That is the fear of taking risks and connecting with people. After my solo eight-day camping trip across the southwestern United States in 2001, I learned afterwards that the fear subsided. I decided that I would continue to find adventures that would remind me that my fear is real and that I should continue to put it aside to take the plunge in living my life to its fullest. It has worked and I will continue to seek out adventures. I have found that yoga is also a wonderful way to continue to resist my fear. I continue to push myself to do challenging poses. This picture was taken ten days ago and it was the first time I attempted the headstand far away from a wall since before the surgeries. My core strength is coming back.
Fearless is indeed the new pretty. Let's roll.
A fellow endometrial cancer survivor made the recommendation that I celebrate every year by taking a trip. I thought that was a nice way to celebrate life. I have heard from other cancer survivors about how they celebrate. The date I got news that I was in remission was April 14, 2015. I was not done with the wild, medical ride until much later though. But I can assert that I am relieved that the major surgery got rid of the cancer.
My friend and I went to Canada to celebrate. We were celebrating her engagement as well! I'm excited to see her get married in September. I had this itch to do something absolutely crazy. I asked her if she was up to it. She was nervous because of her fear of heights. Later on, she said that she wouldn't have gone if she knew about my tendency to do crazy things. I have skydived twice. I have gone ziplining. I have gone paragliding. I swam from Alcatraz to San Francisco. I have taken trapeze lessons. I have done more crazy things. The Edgewalk was the next crazy thing to do. I am glad I did not tell her! The Edgewalk at the CN Tower in Toronto. And it was mind-blowing to go out on the edge of a tall tower and walk along the edge. It was scary. I did not like leaning forward but felt comfortable with leaning backwards.
While I was walking along the edge, I was remembering the battle with cancer and infection. I did not choose that ride. I choose to walk over the edge but I did not choose that medical roller coaster. I was thrown on that ride and dealt with it a day at a time. And I did it.
Someone asked me a few days after the Edgewalk why I keep on doing crazy things. I said that I noticed that as I grow older, my fear grows. That is the fear of taking risks and connecting with people. After my solo eight-day camping trip across the southwestern United States in 2001, I learned afterwards that the fear subsided. I decided that I would continue to find adventures that would remind me that my fear is real and that I should continue to put it aside to take the plunge in living my life to its fullest. It has worked and I will continue to seek out adventures. I have found that yoga is also a wonderful way to continue to resist my fear. I continue to push myself to do challenging poses. This picture was taken ten days ago and it was the first time I attempted the headstand far away from a wall since before the surgeries. My core strength is coming back.
Fearless is indeed the new pretty. Let's roll.
Sunday, April 10, 2016
Genetic counseling and testing
I had genetic testing done a few days ago. My first questions when I got diagnosed with endometrial cancer were: "Why do I have it?" and "What caused it?" Maybe I will never know the actual answer. Several doctors I saw in the past year highly recommended genetic testing commenting that I was too young to get endometrial cancer. It is more typical for women over the age of 50 to get endometrial cancer. I remember I had a hard time finding women who got this cancer before their menopause. I found a few. We all ask why.
The genetic counselor was very kind but she overwhelmed me a tad with a ton of information for me to process. I decided to go ahead with the genetic testing primarily because it would be good to find out whether it was a hereditary cancer or sporadic cancer. There are three kinds of cancers--- hereditary, familial, or sporadic. Hereditary cancer emerges as a result of a gene mutation being passed down. Familial cancer, which typically involves several people in the family with the same kind of cancer, could be a combination of genetic and environmental factors. Sporadic cancer just emerges by chance. It is clear that mine was not familial because no one in my family had endometrial cancer. It's either hereditary or sporadic. If it's sporadic then I will probably never know why I got it. It could be the environment. People often talk about how our environment as well as what is in our food is toxic and there has been an exponential increase of people with cancer.
The genetic counselor reviewed the list of risk factors that could imply the presence of hereditary cancer: multiple, young, or rare. Multiple: at least two persons in the family having similar cancers. Young: anyone who had either breast, colorectal, or uterine cancer at age 50 or younger. Rare: any person who has the following rare occurrences at any age-- ovarian cancer, male breast cancer, triple-negative breast cancer, colorectal cancer with Lynch Syndrome, uterine cancer with abnormal Lynch syndrome, or 10+ gastrointestinal polyps. So far, I fall under the category of Young. I got diagnosed with uterine cancer at 38. She emphasized that I was very young to get this type of cancer. Genetic testing could confirm whether I have Lynch Syndrome which would put me in the Rare category. Those who have hereditary cancers have their lifetime cancer risks increase significantly. Hence the importance of genetic testing and developing a prevention plan for life.
The genetic counselor showed me a list of genes that impact eight important cancer types: breast, ovarian, colorectal, uterine, melanoma, pancreatic, stomach, and prostate. There are currently at least 25 identified gene mutations. They are still trying to see if there are more mutations to be discovered. Here's the list of identified gene mutations (I boldfaced the ones that leads to uterine cancer):
BRCA 1/BRCA 2
MLH1
MSH2
MSH6
PMS2
EPCAM
APC
MUTYH Biallelic
MUTYH Monoallelic
CDKN2A (p16INK4a)
CDKN2A (p14ARF)
CDK4
TP53
PTEN
STK11
CDH1
BMPR1A
SMAD4
PALB2
CHEK2
ATM
NBN
BARD1
BRIP1
RAD51C
RAD51D
I will be tested for all cancer genes. Results come 4-6 weeks after insurance approval. There are three possible outcomes: positive result, negative result, and uncertain variant. A positive result means I do have a gene mutation and a special medical management will be developed to monitor and prevent cancer. A negative result means there's no increased risk and I can be screened like the general population meaning start mammograms at age 40 and colonoscopy at age 50 along with my existing surveillance plan for the endometrial cancer. The uncertain variant result means that a mutation was found in the DNA but it is not known if the change would cause cancer. Medical management schedule will be similar to the negative result. Additionally, my DNA sample would be kept at the lab indefinitely. If they determine the mutation in the DNA is a new cancer gene, they will notify me regardless of when it is.
They told me before I came that they won't be collecting my blood at this particular location but my saliva sample. I thought they would be swabbing my cheek as seen on television. Nope. I was surprised to find out that I had to spit in a test tube. I had to keep on spitting until the sample reached the line on the test tube. The layer of bubbles was not counted. Believe me, it was hard to fill up that tube. I was instructed not to eat anything, take mints, chew gums, or drink anything other than water two hours prior to the test. Water was okay for up until 30 minutes prior. I had a dry mouth literally when it was time to collect my spit. I had to make chewing motions with my mouth to build up the saliva. My mouth was tired. They gave me a couple of breaks. I was able to fill up that tube in about ten minutes. Phew.
My tube of spit was sent to the lab in Utah. They will then pursue insurance approval before testing. the sample. The genetic counselor said that sometime the insurance companies refuse to give approval. They will then file an appeal proving that it is medically necessary given the fact I had endometrial cancer before the age of 50 in hopes that the decision would be overturned. The test costs $4500. Now it's a waiting game.
The genetic counselor was very kind but she overwhelmed me a tad with a ton of information for me to process. I decided to go ahead with the genetic testing primarily because it would be good to find out whether it was a hereditary cancer or sporadic cancer. There are three kinds of cancers--- hereditary, familial, or sporadic. Hereditary cancer emerges as a result of a gene mutation being passed down. Familial cancer, which typically involves several people in the family with the same kind of cancer, could be a combination of genetic and environmental factors. Sporadic cancer just emerges by chance. It is clear that mine was not familial because no one in my family had endometrial cancer. It's either hereditary or sporadic. If it's sporadic then I will probably never know why I got it. It could be the environment. People often talk about how our environment as well as what is in our food is toxic and there has been an exponential increase of people with cancer.
The genetic counselor reviewed the list of risk factors that could imply the presence of hereditary cancer: multiple, young, or rare. Multiple: at least two persons in the family having similar cancers. Young: anyone who had either breast, colorectal, or uterine cancer at age 50 or younger. Rare: any person who has the following rare occurrences at any age-- ovarian cancer, male breast cancer, triple-negative breast cancer, colorectal cancer with Lynch Syndrome, uterine cancer with abnormal Lynch syndrome, or 10+ gastrointestinal polyps. So far, I fall under the category of Young. I got diagnosed with uterine cancer at 38. She emphasized that I was very young to get this type of cancer. Genetic testing could confirm whether I have Lynch Syndrome which would put me in the Rare category. Those who have hereditary cancers have their lifetime cancer risks increase significantly. Hence the importance of genetic testing and developing a prevention plan for life.
The genetic counselor showed me a list of genes that impact eight important cancer types: breast, ovarian, colorectal, uterine, melanoma, pancreatic, stomach, and prostate. There are currently at least 25 identified gene mutations. They are still trying to see if there are more mutations to be discovered. Here's the list of identified gene mutations (I boldfaced the ones that leads to uterine cancer):
BRCA 1/BRCA 2
MLH1
MSH2
MSH6
PMS2
EPCAM
APC
MUTYH Biallelic
MUTYH Monoallelic
CDKN2A (p16INK4a)
CDKN2A (p14ARF)
CDK4
TP53
PTEN
STK11
CDH1
BMPR1A
SMAD4
PALB2
CHEK2
ATM
NBN
BARD1
BRIP1
RAD51C
RAD51D
I will be tested for all cancer genes. Results come 4-6 weeks after insurance approval. There are three possible outcomes: positive result, negative result, and uncertain variant. A positive result means I do have a gene mutation and a special medical management will be developed to monitor and prevent cancer. A negative result means there's no increased risk and I can be screened like the general population meaning start mammograms at age 40 and colonoscopy at age 50 along with my existing surveillance plan for the endometrial cancer. The uncertain variant result means that a mutation was found in the DNA but it is not known if the change would cause cancer. Medical management schedule will be similar to the negative result. Additionally, my DNA sample would be kept at the lab indefinitely. If they determine the mutation in the DNA is a new cancer gene, they will notify me regardless of when it is.
They told me before I came that they won't be collecting my blood at this particular location but my saliva sample. I thought they would be swabbing my cheek as seen on television. Nope. I was surprised to find out that I had to spit in a test tube. I had to keep on spitting until the sample reached the line on the test tube. The layer of bubbles was not counted. Believe me, it was hard to fill up that tube. I was instructed not to eat anything, take mints, chew gums, or drink anything other than water two hours prior to the test. Water was okay for up until 30 minutes prior. I had a dry mouth literally when it was time to collect my spit. I had to make chewing motions with my mouth to build up the saliva. My mouth was tired. They gave me a couple of breaks. I was able to fill up that tube in about ten minutes. Phew.
My tube of spit was sent to the lab in Utah. They will then pursue insurance approval before testing. the sample. The genetic counselor said that sometime the insurance companies refuse to give approval. They will then file an appeal proving that it is medically necessary given the fact I had endometrial cancer before the age of 50 in hopes that the decision would be overturned. The test costs $4500. Now it's a waiting game.
Wednesday, March 30, 2016
Hysterectomy: It ain't peachy but it isn't life-ending
HysterSisters, the organization dedicated to education of the surgery and recovery, sent me an email this morning with my one-year checkpoint. Yep. It's been a year since my hysterectomy. I was walking through the cancer center at a local hospital last night reflecting. Tears came to my eyes as I remembered the process I went through to make the decision to have the surgery. The recovery process wasn't a walk in the park either.
Hysterectomy: Hustera- womb/ ectomy-surgical removal. When I first researched the surgery after learning it was the best option to remove the cancer, I learned that in the old days it was believed that hysterics came from a wandering or a troubled uterus. In the 19th century, hysterectomy was the treatment for hysteria. Of course this isn't true nowadays but doctors are still quick to prescribe hysterectomy as the answer to many female-related problems.
In my initial research, I came across an upsetting video made by an extremist organization that is very against hysterectomies. It was their video that made me break down a few days after my first gynecologic oncology appointment. It was their video that made me feel that maybe it's better to let the cancer kill me before letting any medical professional come close to my uterus.
I do agree with the organization's concern that doctors are quick to do hysterectomies. It has become the routine treatment for different female-related issues just like they did in the 19th century to treat hysteria! HysterSisters also supports the belief that hysterectomy is not always the best option. It is a major surgery and as with any major surgeries, there are risks. In the HysterSisters' literature, they suggest information on alternative treatments for different conditions and diseases that many gynecologists might be too quick to skip to surgery when it should be the last resort. I remember reading their information and looked under cancer. Unfortunately, hysterectomy is the only treatment for cancer. There are no optimal alternatives. That was difficult for me to swallow. Once I accepted that surgery was the best route to prolong my life, the very idea of the surgery affected my psyche. I spoke with women who had the surgery before menopause and learned that many of them do go on to have healthy lives. A big plus was not having menstrual cramps or menstruation. I learned that their sexuality was not affected. For those who had ovaries removed, there was a period of adjustment. A friend who had the surgery told me that it became more about healing the mind not just the body. The idea of the surgery can easily mess with a woman's head. Heck, it's the reproductive system as well as the sexual parts that have to go. It was something that I couldn't let go of... I was okay with the idea of doctors taking my breasts away or other parts of the body if it was necessary. BUT my reproductive system... no, no, no!!!
HysterSisters was a wonderful source of support leading up to the surgery and during the recovery progress. I established a profile with them which included the date of my surgery and the method. There are several ways to do a hysterectomy. Mine was the daVinci method with removal of fallopian tubes, uterus, and cervix via the vagina. I was put in a support group of women who had the surgery the same week I did. We connected on our recovery process. It was so helpful to know I was not alone when I was trying to understand parts of my recovery. We talked on a daily basis for about two months then communications slowly stopped. The support group members pretty much have gone into our separate ways as we have healed from our surgeries. HysterSisters also sent me regular emails with checkpoints. I had one each week then it became once a month up until six months. Then I didn't hear from them again until this morning.
"A year is behind you, and the anniversary of your surgery is here. We hope that during the past year you have been able to concentrate on your health and find new ways to enjoy life, re-framing it with the joy of life's blessings alongside the challenges you've faced."
Now that the year has passed and I have greater understanding of the surgery, I find that some of that organization's claims are not valid. It was time for me to watch the video again and dissect it further. It was reassuring to see how far I have come. I couldn't handle watching it last year. Today, I am able to watch it and disagree. I think it is about finding the right surgeon and verifying that they have done a good number of this type of surgery. As with any surgery, there are risks. I suffered with one of the rare risks- infection that haunted me for so long. I am listing their claims from the video and my responses. This is a post I wish I had access to while trying to decide if the surgery was the best route for me. Fortunately, I had one dear friend who had hysterectomy done before menopause and she was willing to tell me A to Z, answering every single one of my question. Hysterectomy is a private surgery for many but how do we better prepare for other women who need it if there's not enough openess?
1. The uterus lies in between the bladder and the bowel. Thus there will be a loss of control of urination and bowel movements, or even possibly chronic constipation. Bladder and urinary problems are common after the surgery. Without an uterus in place, the bowel can bulge down creating a rectocele which is ballooning of the bowel into the vagina.
This was one of the things that scared me but after talking with women who had the surgery, this is generally not true. Yes there are some cases where women are affected by adhesions from the surgery. They do have repair surgeries to address the issues. Those issues are very rare. That's why women are strongly encouraged to follow the recovery guidelines to the letter. I was told to do my Kegel and pelvic floor exercises as well to help with rebuilding of muscles in that area. I was frustrated that I couldn't do much for the first six weeks following the surgery but it was to ensure that I don't have any problems such as those. Those in my HysterSisters group had some problems because they pushed themselves too soon.
As for constipation, I had to deal with those after each of three surgeries I had last year but that's from the anesthesia and pain medications. I am pretty regular. Urinary tract infection is a common infection immediately following the surgery. I had that in April last year which was treated with antibiotics. I was advised to take cranberry supplement to help with the recovery process. I am happy to report that everything is working quite well.
2. The skeletal structure would be affected since ligaments would be severed in the removal of the uterus. Essentially, the rib cage will fall onto the hip bones compressing the spine. Thus the woman would lose the 'waist'.
So far I still have my waist. I guess that's a good thing, ha! My rib cage hasn't fallen. My spine isn't compressed. Yes, there were some discomfort and soreness in the back, hips, and pelvis after the surgery. I was given a list of exercises to help re-build strength in those areas. Yoga has been a godsend.
3. Because the nerves are severed, sensation would be lost in the vagina, clitoris, labia, and nipples.
This was a concern of mine but after talking with other women, I learned this is not true. I can still feel sensation. Many women report that sex is much more pleasurable after the surgery. I don't understand how nipples come into the claim here because those are in a different part of the body.
4. Women are unable to walk and sit because nerves are severed which causes a searing pain down the buttock through the knees.
I still love to walk a lot. I still love to hike. I sit a lot for work and academic work (unfortunately). I am tempted to buy one of those desks with an attached treadmill. Yes, it was hard to sit after the surgery because there was so much pain in that area. I had a pillow to sit on. It didn't help that I had an infection afterwards which made it harder to sit. Now that all of that is in the past, I do feel comfortable. I don't have any pain when I walk or sit.
5. Uterine orgasms would be gone forever. (But later on in the video, they said that it will be missed by women who had uterine orgasms before the surgery).
This continues to be a topic of interest to me. The female orgasm is a complicated one. I think it's an individual experience. Not every woman has the same experience. I spoke with women who had the surgery. I spoke with sexual experts. They say that the orgasms begin within the clitoris and/or the vagina which cause the pelvic muscles to contract. Women who had the surgery had the uterus removed but not their pelvic muscles. Many women I spoke with say that it takes time for them to explore sexually to feel comfortable again but sex is usually much better after the surgery.
6. Sexual feeling will be lost.
I think this depends on whether the ovaries are removed. It is true for many menopausal women to have sexual changes when menstruation stops. There was a woman in my HysterSisters group who had lost her sexual feelings. I'm not sure why but this is rare. Later on in the process, she admitted that she had a bad surgeon who also caused other complications for her. Dr. Jewell, who I ended up choosing and trusted to do my hysterectomy, assured me again and again that I would be fine sexually. I do still have the drive. It boils down to finding the right partner who is willing to explore with me. We'll see what's in the store for me in the future.
6. Ovaries produce hormones for the entire lifetime. 75% of women who undergo a hysterectomy also under go an oophorectomy (removal of ovaries). The medical term of removal of gonads (ovaries/ testes) is castration.
This is sadly true. I was surprised to meet gynecologists who thought it was okay to remove ovaries as well. There are significant risks involved. The first two oncologists I met were quick to say that ovaries would have to go as well. The third one, Dr. Jewell, said that if the ovaries are fine then she wouldn't want to remove them. I tested negative for ovarian cancer. She warned me on the day of the surgery that if the ovaries looked bad, she would have to remove them. The goal was to keep at least one. Losing ovaries mean a 50% overall higher risk of mortality along with numerous health risks including heart disease, osteoporosis, and breast cancer. Ovaries also contribute to the sexual health. Oophorectomy is essentially castration. I have been criticized for being stubborn about keeping my ovaries. Have you ever heard of men getting their balls cut off on a regular basis? No. It's a no-no. That should be applied to ovaries. I understand there are unique circumstances that actually require removal of ovaries and testes. I have been a strong advocate since then for women to fight for their ovaries or at least one as many women were rushed into the surgery without having any time to research the consequences of losing their ovaries. A previous post discussed the importance of keeping ovaries: http://naomicancerjourney.blogspot.com/2015_09_01_archive.html.
7. Hysterectomy that involves removal of uterus and cervix vaginally results into a gap where the cervix once was. This hole has to be sewn shut creating a closed pocket and a shortened vagina.
This was one of the things that scared me. A shortened vagina!?! This is possible that this was true in the past but surgical techniques have improved a lot since then. I do not have a shortened vagina. It feels pretty much the same. I used to have a vaginal canal. Now it's called a vaginal cuff. Dr. Jewell sewed the cuff at the end where the cervix once was. It is different finding no cervical stump at the end but I've gotten used to that. Everything else in the vagina remains intact.
8. Sometime the sutures do not hold resulting into a vaginal prolapse out of the vaginal opening. This is basically like a turned out pocket.
I grilled Dr. Jewell about this before my surgery. She said that this rarely happens. It could happen because recovery guidelines were not followed to the letter. Even if this does happen, repair surgeries are done. I also believe that it depends on the surgeon to make sure the vaginal cuff is closed and secured correctly.
9. Laparoscopic hysterectomy takes longer than other hysterectomy surgeries because the abdomen is inflated with gas creating stress on the body.
True. My abdomen was blown up to be about two times bigger than a pregnant woman who reached full-term (40 weeks). Recovering from the gas inflation was no easy feat. I was gassy for days. I felt sore in my abdomen as if I was trying to catch my breath. I had a swollen belly for at least six months. However, the benefits of doing a robotic-assisted laparoscopic hysterectomy outweigh the cons. The other route is total abdominal hysterectomy which means the abdomen is cut open. A longer hospital stay is required. Recovery is much longer and harder. Today I have five small incisions across my abdomen from the daVinci robotic surgery. Two of them are actually hard to spot now.
10. Hysterectomy causes the following: loss of vitality, joint pain, profound fatigue, personality change, loss of stamina, loss of short term memory, loss of ability to socialize, insomnia, suicidal thoughts, unable to maintain previous employment, loss of maternal feeling, and loss of ability to maintain activity in the home.
As with any major surgery, the loss of vitality is evident. It takes time for the person to recover from the surgery. I was tired all the time and sleeping a lot for weeks. It's not just the hysterectomy itself. When I was recovering from the infection, I was also tired. When all of my medical issues were resolved (recovered from the hysterectomy and the infection was gone), I was feeling pretty great. I have my stamina back. I feel great today. I am active. I am working out. I am working with a renewed sense of energy again. My mind is alert. I'm eager and passionate to enjoy my life. This evening I had a great yoga class. I was able to do a backbend, handstand, headstand, and shoulderstand just fine.
No joint pains here. It's about maintaining an active lifestyle.
Personality change... I do not feel the hysterectomy changed my personality. I am still caring, funny, adventurous, dedicated, determined, and nerdy. For anyone to go through a difficult disease, there is a changed perspective on life. I had cancer and that changed my view on many matters. The essence of Naomi remains though.
My memory remains intact. I have a darn good memory. I am more nervous about the aging effects on my memory though! I'm approaching age 40! Dang!
I still socialize. I enjoy my time with friends. I enjoy connecting with people.
Sleeping continues to be a challenge for me because I still can't get my busy mind to quiet down! It was an issue before my hysterectomy and still is an issue. In fact I miss the first few weeks after the surgery because I was really sleeping! I slept so much because I was actually tired! I think insomnia is caused by various factors and it is irrational to make hysterectomy the sole cause.
Suicidal thoughts come from the the feeling of despair. I don't think the surgery causes it. Like I said earlier, the surgery does mess with the woman's mind. It's so hard to go through a major change like that. Loss of reproductive ability can hit a woman so hard especially if the woman is still of a child-bearing age. I think the real issue lies with how the woman choose to respond. Yes I had initial struggles with the surgery. I choose to respond in a way that I am blessed I am still alive and that I am in remission. I think it's an individual choice to be happy. I choose to be happy. The cancer taught me that quality life is even more important than ever so I made a lot of changes in my life to ensure a quality life and I'm in a good place right now.
I still have my job! I am still doing my freelance work as well. It WAS difficult to return to work which is true for any major surgery. It took me a few weeks to get back on the horse, so to speak. I love what I do for living. I think this is tied to attitude towards the surgery. If the woman is depressed and lifeless, then a job will be lost.
I have never been a biological mother of a human child. But... as I learned, I do have maternal instinct. I discussed this in depth in a previous post: http://naomicancerjourney.blogspot.com/2015/04/emotional-recovery.html. I am a mom of a furkid, Chocolate. I am very maternal with him. That was true before the hysterectomy and still the same afterwards.
Again, activity in the home is tied to attitude. I still do my own thing daily. I am grateful that now that I am recovered from the surgery and infection, there's so much more I can do now!
That video truthfully terrified me. It was through research and experience that made me learn that hysterectomy is a difficult surgery but life doesn't have to be different afterwards. During my research, I did contact this organization asking what their recommendations are for women with cancer. They said there are gynecologic oncologists that can help me stay on hormone therapy for life just to keep my uterus, cervix, and tubes. I did explore that avenue. Hormone therapy was the pits! I couldn't imagine the rest of my life with daily nosebleeds, being out of breath from walking Chocolate around the block, continually gaining weight/ feeling bloated, loss of appetite, feeling dehydrated, unpredictable mood swings, and ultimately developing diabetes. Yes, it sucked that I had to undergo the hysterectomy at a young age. It was a difficult experience. On top of it all, I had to deal with a rare side effect of the surgery-- the infection!! The infection developed because my vaginal wall was perforated during the surgery which was also rare. Alas, I just bought myself a lot more mileage in life... quality life! No synthetic hormones! Cancer cells are gone.
Tonight I found comfort in ending the yoga class with savasana (corpse pose). I placed a sandbag on the top of my pelvis. This used to be a favorite thing for me before the hysterectomy. I haven't done it since then. I decided it was fitting that I gave it another try on the anniversary of the surgery. It was so comfortable and I got lost in my meditation. Life is good. Onward.
Hysterectomy: Hustera- womb/ ectomy-surgical removal. When I first researched the surgery after learning it was the best option to remove the cancer, I learned that in the old days it was believed that hysterics came from a wandering or a troubled uterus. In the 19th century, hysterectomy was the treatment for hysteria. Of course this isn't true nowadays but doctors are still quick to prescribe hysterectomy as the answer to many female-related problems.
In my initial research, I came across an upsetting video made by an extremist organization that is very against hysterectomies. It was their video that made me break down a few days after my first gynecologic oncology appointment. It was their video that made me feel that maybe it's better to let the cancer kill me before letting any medical professional come close to my uterus.
I do agree with the organization's concern that doctors are quick to do hysterectomies. It has become the routine treatment for different female-related issues just like they did in the 19th century to treat hysteria! HysterSisters also supports the belief that hysterectomy is not always the best option. It is a major surgery and as with any major surgeries, there are risks. In the HysterSisters' literature, they suggest information on alternative treatments for different conditions and diseases that many gynecologists might be too quick to skip to surgery when it should be the last resort. I remember reading their information and looked under cancer. Unfortunately, hysterectomy is the only treatment for cancer. There are no optimal alternatives. That was difficult for me to swallow. Once I accepted that surgery was the best route to prolong my life, the very idea of the surgery affected my psyche. I spoke with women who had the surgery before menopause and learned that many of them do go on to have healthy lives. A big plus was not having menstrual cramps or menstruation. I learned that their sexuality was not affected. For those who had ovaries removed, there was a period of adjustment. A friend who had the surgery told me that it became more about healing the mind not just the body. The idea of the surgery can easily mess with a woman's head. Heck, it's the reproductive system as well as the sexual parts that have to go. It was something that I couldn't let go of... I was okay with the idea of doctors taking my breasts away or other parts of the body if it was necessary. BUT my reproductive system... no, no, no!!!
HysterSisters was a wonderful source of support leading up to the surgery and during the recovery progress. I established a profile with them which included the date of my surgery and the method. There are several ways to do a hysterectomy. Mine was the daVinci method with removal of fallopian tubes, uterus, and cervix via the vagina. I was put in a support group of women who had the surgery the same week I did. We connected on our recovery process. It was so helpful to know I was not alone when I was trying to understand parts of my recovery. We talked on a daily basis for about two months then communications slowly stopped. The support group members pretty much have gone into our separate ways as we have healed from our surgeries. HysterSisters also sent me regular emails with checkpoints. I had one each week then it became once a month up until six months. Then I didn't hear from them again until this morning.
"A year is behind you, and the anniversary of your surgery is here. We hope that during the past year you have been able to concentrate on your health and find new ways to enjoy life, re-framing it with the joy of life's blessings alongside the challenges you've faced."
Now that the year has passed and I have greater understanding of the surgery, I find that some of that organization's claims are not valid. It was time for me to watch the video again and dissect it further. It was reassuring to see how far I have come. I couldn't handle watching it last year. Today, I am able to watch it and disagree. I think it is about finding the right surgeon and verifying that they have done a good number of this type of surgery. As with any surgery, there are risks. I suffered with one of the rare risks- infection that haunted me for so long. I am listing their claims from the video and my responses. This is a post I wish I had access to while trying to decide if the surgery was the best route for me. Fortunately, I had one dear friend who had hysterectomy done before menopause and she was willing to tell me A to Z, answering every single one of my question. Hysterectomy is a private surgery for many but how do we better prepare for other women who need it if there's not enough openess?
1. The uterus lies in between the bladder and the bowel. Thus there will be a loss of control of urination and bowel movements, or even possibly chronic constipation. Bladder and urinary problems are common after the surgery. Without an uterus in place, the bowel can bulge down creating a rectocele which is ballooning of the bowel into the vagina.
This was one of the things that scared me but after talking with women who had the surgery, this is generally not true. Yes there are some cases where women are affected by adhesions from the surgery. They do have repair surgeries to address the issues. Those issues are very rare. That's why women are strongly encouraged to follow the recovery guidelines to the letter. I was told to do my Kegel and pelvic floor exercises as well to help with rebuilding of muscles in that area. I was frustrated that I couldn't do much for the first six weeks following the surgery but it was to ensure that I don't have any problems such as those. Those in my HysterSisters group had some problems because they pushed themselves too soon.
As for constipation, I had to deal with those after each of three surgeries I had last year but that's from the anesthesia and pain medications. I am pretty regular. Urinary tract infection is a common infection immediately following the surgery. I had that in April last year which was treated with antibiotics. I was advised to take cranberry supplement to help with the recovery process. I am happy to report that everything is working quite well.
2. The skeletal structure would be affected since ligaments would be severed in the removal of the uterus. Essentially, the rib cage will fall onto the hip bones compressing the spine. Thus the woman would lose the 'waist'.
So far I still have my waist. I guess that's a good thing, ha! My rib cage hasn't fallen. My spine isn't compressed. Yes, there were some discomfort and soreness in the back, hips, and pelvis after the surgery. I was given a list of exercises to help re-build strength in those areas. Yoga has been a godsend.
3. Because the nerves are severed, sensation would be lost in the vagina, clitoris, labia, and nipples.
This was a concern of mine but after talking with other women, I learned this is not true. I can still feel sensation. Many women report that sex is much more pleasurable after the surgery. I don't understand how nipples come into the claim here because those are in a different part of the body.
4. Women are unable to walk and sit because nerves are severed which causes a searing pain down the buttock through the knees.
I still love to walk a lot. I still love to hike. I sit a lot for work and academic work (unfortunately). I am tempted to buy one of those desks with an attached treadmill. Yes, it was hard to sit after the surgery because there was so much pain in that area. I had a pillow to sit on. It didn't help that I had an infection afterwards which made it harder to sit. Now that all of that is in the past, I do feel comfortable. I don't have any pain when I walk or sit.
5. Uterine orgasms would be gone forever. (But later on in the video, they said that it will be missed by women who had uterine orgasms before the surgery).
This continues to be a topic of interest to me. The female orgasm is a complicated one. I think it's an individual experience. Not every woman has the same experience. I spoke with women who had the surgery. I spoke with sexual experts. They say that the orgasms begin within the clitoris and/or the vagina which cause the pelvic muscles to contract. Women who had the surgery had the uterus removed but not their pelvic muscles. Many women I spoke with say that it takes time for them to explore sexually to feel comfortable again but sex is usually much better after the surgery.
6. Sexual feeling will be lost.
I think this depends on whether the ovaries are removed. It is true for many menopausal women to have sexual changes when menstruation stops. There was a woman in my HysterSisters group who had lost her sexual feelings. I'm not sure why but this is rare. Later on in the process, she admitted that she had a bad surgeon who also caused other complications for her. Dr. Jewell, who I ended up choosing and trusted to do my hysterectomy, assured me again and again that I would be fine sexually. I do still have the drive. It boils down to finding the right partner who is willing to explore with me. We'll see what's in the store for me in the future.
6. Ovaries produce hormones for the entire lifetime. 75% of women who undergo a hysterectomy also under go an oophorectomy (removal of ovaries). The medical term of removal of gonads (ovaries/ testes) is castration.
This is sadly true. I was surprised to meet gynecologists who thought it was okay to remove ovaries as well. There are significant risks involved. The first two oncologists I met were quick to say that ovaries would have to go as well. The third one, Dr. Jewell, said that if the ovaries are fine then she wouldn't want to remove them. I tested negative for ovarian cancer. She warned me on the day of the surgery that if the ovaries looked bad, she would have to remove them. The goal was to keep at least one. Losing ovaries mean a 50% overall higher risk of mortality along with numerous health risks including heart disease, osteoporosis, and breast cancer. Ovaries also contribute to the sexual health. Oophorectomy is essentially castration. I have been criticized for being stubborn about keeping my ovaries. Have you ever heard of men getting their balls cut off on a regular basis? No. It's a no-no. That should be applied to ovaries. I understand there are unique circumstances that actually require removal of ovaries and testes. I have been a strong advocate since then for women to fight for their ovaries or at least one as many women were rushed into the surgery without having any time to research the consequences of losing their ovaries. A previous post discussed the importance of keeping ovaries: http://naomicancerjourney.blogspot.com/2015_09_01_archive.html.
7. Hysterectomy that involves removal of uterus and cervix vaginally results into a gap where the cervix once was. This hole has to be sewn shut creating a closed pocket and a shortened vagina.
This was one of the things that scared me. A shortened vagina!?! This is possible that this was true in the past but surgical techniques have improved a lot since then. I do not have a shortened vagina. It feels pretty much the same. I used to have a vaginal canal. Now it's called a vaginal cuff. Dr. Jewell sewed the cuff at the end where the cervix once was. It is different finding no cervical stump at the end but I've gotten used to that. Everything else in the vagina remains intact.
8. Sometime the sutures do not hold resulting into a vaginal prolapse out of the vaginal opening. This is basically like a turned out pocket.
I grilled Dr. Jewell about this before my surgery. She said that this rarely happens. It could happen because recovery guidelines were not followed to the letter. Even if this does happen, repair surgeries are done. I also believe that it depends on the surgeon to make sure the vaginal cuff is closed and secured correctly.
9. Laparoscopic hysterectomy takes longer than other hysterectomy surgeries because the abdomen is inflated with gas creating stress on the body.
True. My abdomen was blown up to be about two times bigger than a pregnant woman who reached full-term (40 weeks). Recovering from the gas inflation was no easy feat. I was gassy for days. I felt sore in my abdomen as if I was trying to catch my breath. I had a swollen belly for at least six months. However, the benefits of doing a robotic-assisted laparoscopic hysterectomy outweigh the cons. The other route is total abdominal hysterectomy which means the abdomen is cut open. A longer hospital stay is required. Recovery is much longer and harder. Today I have five small incisions across my abdomen from the daVinci robotic surgery. Two of them are actually hard to spot now.
10. Hysterectomy causes the following: loss of vitality, joint pain, profound fatigue, personality change, loss of stamina, loss of short term memory, loss of ability to socialize, insomnia, suicidal thoughts, unable to maintain previous employment, loss of maternal feeling, and loss of ability to maintain activity in the home.
As with any major surgery, the loss of vitality is evident. It takes time for the person to recover from the surgery. I was tired all the time and sleeping a lot for weeks. It's not just the hysterectomy itself. When I was recovering from the infection, I was also tired. When all of my medical issues were resolved (recovered from the hysterectomy and the infection was gone), I was feeling pretty great. I have my stamina back. I feel great today. I am active. I am working out. I am working with a renewed sense of energy again. My mind is alert. I'm eager and passionate to enjoy my life. This evening I had a great yoga class. I was able to do a backbend, handstand, headstand, and shoulderstand just fine.
No joint pains here. It's about maintaining an active lifestyle.
Personality change... I do not feel the hysterectomy changed my personality. I am still caring, funny, adventurous, dedicated, determined, and nerdy. For anyone to go through a difficult disease, there is a changed perspective on life. I had cancer and that changed my view on many matters. The essence of Naomi remains though.
My memory remains intact. I have a darn good memory. I am more nervous about the aging effects on my memory though! I'm approaching age 40! Dang!
I still socialize. I enjoy my time with friends. I enjoy connecting with people.
Sleeping continues to be a challenge for me because I still can't get my busy mind to quiet down! It was an issue before my hysterectomy and still is an issue. In fact I miss the first few weeks after the surgery because I was really sleeping! I slept so much because I was actually tired! I think insomnia is caused by various factors and it is irrational to make hysterectomy the sole cause.
Suicidal thoughts come from the the feeling of despair. I don't think the surgery causes it. Like I said earlier, the surgery does mess with the woman's mind. It's so hard to go through a major change like that. Loss of reproductive ability can hit a woman so hard especially if the woman is still of a child-bearing age. I think the real issue lies with how the woman choose to respond. Yes I had initial struggles with the surgery. I choose to respond in a way that I am blessed I am still alive and that I am in remission. I think it's an individual choice to be happy. I choose to be happy. The cancer taught me that quality life is even more important than ever so I made a lot of changes in my life to ensure a quality life and I'm in a good place right now.
I still have my job! I am still doing my freelance work as well. It WAS difficult to return to work which is true for any major surgery. It took me a few weeks to get back on the horse, so to speak. I love what I do for living. I think this is tied to attitude towards the surgery. If the woman is depressed and lifeless, then a job will be lost.
I have never been a biological mother of a human child. But... as I learned, I do have maternal instinct. I discussed this in depth in a previous post: http://naomicancerjourney.blogspot.com/2015/04/emotional-recovery.html. I am a mom of a furkid, Chocolate. I am very maternal with him. That was true before the hysterectomy and still the same afterwards.
Again, activity in the home is tied to attitude. I still do my own thing daily. I am grateful that now that I am recovered from the surgery and infection, there's so much more I can do now!
That video truthfully terrified me. It was through research and experience that made me learn that hysterectomy is a difficult surgery but life doesn't have to be different afterwards. During my research, I did contact this organization asking what their recommendations are for women with cancer. They said there are gynecologic oncologists that can help me stay on hormone therapy for life just to keep my uterus, cervix, and tubes. I did explore that avenue. Hormone therapy was the pits! I couldn't imagine the rest of my life with daily nosebleeds, being out of breath from walking Chocolate around the block, continually gaining weight/ feeling bloated, loss of appetite, feeling dehydrated, unpredictable mood swings, and ultimately developing diabetes. Yes, it sucked that I had to undergo the hysterectomy at a young age. It was a difficult experience. On top of it all, I had to deal with a rare side effect of the surgery-- the infection!! The infection developed because my vaginal wall was perforated during the surgery which was also rare. Alas, I just bought myself a lot more mileage in life... quality life! No synthetic hormones! Cancer cells are gone.
Tonight I found comfort in ending the yoga class with savasana (corpse pose). I placed a sandbag on the top of my pelvis. This used to be a favorite thing for me before the hysterectomy. I haven't done it since then. I decided it was fitting that I gave it another try on the anniversary of the surgery. It was so comfortable and I got lost in my meditation. Life is good. Onward.
Saturday, March 26, 2016
Celebrations
It's been a while...
It is difficult to write when I am traveling and dealing with unexpected stuff that come up. Life is always full of curveballs. Whether it is cancer or something else. I just gotta keep on rolling with it. I am truly blessed that I am still alive and kickin' to be able to face life head on. Each day comes with a lesson, big or small. I keep on learning each day.
I saw my doctor yesterday. I was nervous that I might have to face the big bad monster, "Silver Nitrate," once again. Nope. The wound has finally healed. That little stubborn part is merely a scrape now and will heal in couple of weeks. Whew. Finally. The infection began haunting me mid-April last year. I joked with a few friends that because the wound was in a wet, dark place, I might heal faster if I just went to live in a nudist colony for a while. There's no need for that now. Almost a year later, I am done. Phew. Earlier this week, I got news that I won the last one of five appeals against my insurance company. All the bills related to all of my surgeries and treatments in 2015 have been closed forever. Now I can move forward.
As for the Lynch Syndrome question... genetic testing was done on the polyps found in my uterus by Memorial Sloan Kettering Cancer Center. My doctor explained what was done: "They did special stains on your initial pathology to look for Lynch using a technique called immunohistochemistry. This test looks for expression of four proteins that if missing can mean you have Lynch. In your case the proteins were all expressed. The option after that, if you want, is to do formal genetic testing where your DNA is checked for mutations that could be sometimes be missed despite the normal expression of the proteins."
I decided that I would like to meet with the genetic counselor. In the past year, several doctors highly recommended genetic testing to make sure I don't have any further risks. If I do, I can take action sooner. While I was trying to decide, I was stuck on the fence-- ignorance can be bliss. At the same time, I don't want the ignorance to kill me. The bigger question is... will my insurance pay for the genetic testing? Maybe not. It is worthwhile to explore that avenue.
While I was dealing with recovering from the hysterectomy and fighting the post-surgical infection, I was rushing to meet deadlines that the editors gave me. The first draft of the manuscript was actually submitted in May 2014. I forgot all about it. In May 2015, the editors said it was time to begin the editing stage. It was a back-and-forth process as I worked on the paper. At one point, my co-author got injured and hospitalized that she couldn't do anything. I was on pain medication. I decided to get off the pain medication just to write and edit while I was in pain. What a wild ride that was. The final draft was submitted at the end of November. I remember feeling relieved. I wouldn't recommend working on a publishing a paper while dealing with all the medical stuff but... I made it. It was an opportunity that I couldn't pass up. My very first research study in print. The book was released last month. I feel damn good.
Life has its ups and downs constantly. I am just moving forward. I dealt with cancer, the infection, and waiting what felt like forever for the wound (hole) to heal. It is time to see what the next chapter is all about. I do not know what lies ahead. What I have survived so far keeps on making me stronger for what is coming ahead.
It is difficult to write when I am traveling and dealing with unexpected stuff that come up. Life is always full of curveballs. Whether it is cancer or something else. I just gotta keep on rolling with it. I am truly blessed that I am still alive and kickin' to be able to face life head on. Each day comes with a lesson, big or small. I keep on learning each day.
I saw my doctor yesterday. I was nervous that I might have to face the big bad monster, "Silver Nitrate," once again. Nope. The wound has finally healed. That little stubborn part is merely a scrape now and will heal in couple of weeks. Whew. Finally. The infection began haunting me mid-April last year. I joked with a few friends that because the wound was in a wet, dark place, I might heal faster if I just went to live in a nudist colony for a while. There's no need for that now. Almost a year later, I am done. Phew. Earlier this week, I got news that I won the last one of five appeals against my insurance company. All the bills related to all of my surgeries and treatments in 2015 have been closed forever. Now I can move forward.
As for the Lynch Syndrome question... genetic testing was done on the polyps found in my uterus by Memorial Sloan Kettering Cancer Center. My doctor explained what was done: "They did special stains on your initial pathology to look for Lynch using a technique called immunohistochemistry. This test looks for expression of four proteins that if missing can mean you have Lynch. In your case the proteins were all expressed. The option after that, if you want, is to do formal genetic testing where your DNA is checked for mutations that could be sometimes be missed despite the normal expression of the proteins."
I decided that I would like to meet with the genetic counselor. In the past year, several doctors highly recommended genetic testing to make sure I don't have any further risks. If I do, I can take action sooner. While I was trying to decide, I was stuck on the fence-- ignorance can be bliss. At the same time, I don't want the ignorance to kill me. The bigger question is... will my insurance pay for the genetic testing? Maybe not. It is worthwhile to explore that avenue.
While I was dealing with recovering from the hysterectomy and fighting the post-surgical infection, I was rushing to meet deadlines that the editors gave me. The first draft of the manuscript was actually submitted in May 2014. I forgot all about it. In May 2015, the editors said it was time to begin the editing stage. It was a back-and-forth process as I worked on the paper. At one point, my co-author got injured and hospitalized that she couldn't do anything. I was on pain medication. I decided to get off the pain medication just to write and edit while I was in pain. What a wild ride that was. The final draft was submitted at the end of November. I remember feeling relieved. I wouldn't recommend working on a publishing a paper while dealing with all the medical stuff but... I made it. It was an opportunity that I couldn't pass up. My very first research study in print. The book was released last month. I feel damn good.
Life has its ups and downs constantly. I am just moving forward. I dealt with cancer, the infection, and waiting what felt like forever for the wound (hole) to heal. It is time to see what the next chapter is all about. I do not know what lies ahead. What I have survived so far keeps on making me stronger for what is coming ahead.
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