Last Monday, I met with Dr. Angel who is my new oncologist. I was nervous and apprehensive. The first two oncologists I met - Dr. Diaz-Montes and Dr. Tweed were not very good and they were rather abrasive. Dr. Jewell was a jewel. I did not know what to expect when I met with Dr. Angel. Turns out Dr. Angel is indeed an angel.
After I was checked in, I was looking at the computer monitor and noticed this line of information next to my name "ENDO CA TRANSFER OF CARE". Endometrial cancer is like my permanent brand. I was curious to see what kind of surveillance plan Dr. Angel would propose because Dr. Jewell changed things last May.
I immediately liked her. I liked how she tried to connect with me and get to know me better. Before our appointment, she reviewed all of my records. She asked me how I was feeling overall. She recommended the following surveillance plan that Dr. Jewell initially started. Pap smear plus vaginal, pelvic, and rectal exams every three months for one more year then every six months for the next two years. For the fifth year and beyond, once a year.
She took an interest in my genetic test results and read through the report. We agreed to have me do CA-125 tests routinely just in case. The CA-125 tests for tumor markers of ovarian cancer and I need to get started on my routine mammograms. The next follow-up appointment, she'll do an ultrasound to take a look at my ovaries. She examined me and said that all the surgical incisions looked really good. Two are now hard to notice. I had to point those out to her. She was surprised how small they were. She said everything looked and felt great.
What made it a really good appointment was the quality of the sign language interpreter. The University of Rochester Medical Center has some awesome interpreters. It was nice to be able to live locally and know for sure I would get good interpreters unlike the experience I had in Annapolis at the Anne Arundel Medical Center. I did have to fight with Memorial Sloan-Kettering Cancer Center in New York City to provide me with quality sign language interpreters at the beginning. It's really nice not worrying about the interpreting services so that I can just focus on being the patient.
Friday, August 19, 2016
Sunday, August 14, 2016
Rope Siriasana: Loosening My Rectus Abdominis Muscles
Tomorrow I meet with my new oncologist. I am feeling somewhat apprehensive. I continue to hang on to my temporary respite from doctors as I neglected to complete forms they need from me. Last week, I had to drag my feet to the cancer center for updated blood work. I think tomorrow's appointment will push me back into monitoring my medical needs. I am ready nonetheless. I have to be. That was a nice escape for a while.
While I was working on revamping my food blog, I learned there is now a way for people to be notified via email of my new posts. My loyal readers had been asking for this for a while. I added a new gadget on the right side of my blog. Go ahead and add your email address. Happy reading!
Anyway... back to the point of this post. Two weeks ago, I groaned when the teacher asked us for the second day in a row to do rope siriasana. I often prefer to opt out of doing that pose. Before my hysterectomy, I was simply too scared of doing this pose. This is what it looks like...
The fear of this pose stemmed from a bad yoga teacher who was not certified. She did not carefully explain the steps to me. When I got into it, I fell on my head. Ever since, I had this creeping dread of this particular pose. I was able to successfully avoid doing it as much as I could for a long time.
After my hysterectomy, it seems like my teachers ask me to do this more often in the recent few months than in the past 15 years of yoga classes. Dang. The first of the two days two weeks ago, I went into the pose while facing my old inner fear. I panted heavily. While I was fighting my fear, I realized that I had this other feeling... like this pose was extremely intense for my abdominal muscles. I stopped after five minutes and told my teacher I was done.
When she asked me the next day to do it again, I groaned. She asked me what was going on. I told her. She said she would show me step-by-step how to enter the pose safely and how to exit safely. As for the intensity I feel in my abdomen, she asked me to focus on where specifically as she hasn't heard of anyone complaining of that issue. Once I got the fear out of my mind, I focused on the feeling. I was able to stay in the pose for about five minutes without panting. I got out and told her where... rectus abdominis (also known as the "six-pack" muscles). She said, "Aha... those muscles must have tightened as a result of your hysterectomy." Remember how it took me so long to rebuild strength in those. Now they're tight!! Agh! She encouraged me to continue working on those muscles. The reason why this pose feels so intense is because of the gravitational pull. She proceeded to show me some poses that would work the same muscles with less intensity. Those did feel good. After the class, those muscles felt so tired. The past two weeks, I have been focusing on working on them little by little.
My teacher showed me a book called, "Iyengar Yoga Cancer Book" by Lois Steinberg that includes some suggested poses to work on those muscles. I wish I had known about this book when I was recovering from the surgeries but glad that it is available as a resource.
While I was working on revamping my food blog, I learned there is now a way for people to be notified via email of my new posts. My loyal readers had been asking for this for a while. I added a new gadget on the right side of my blog. Go ahead and add your email address. Happy reading!
Anyway... back to the point of this post. Two weeks ago, I groaned when the teacher asked us for the second day in a row to do rope siriasana. I often prefer to opt out of doing that pose. Before my hysterectomy, I was simply too scared of doing this pose. This is what it looks like...
After my hysterectomy, it seems like my teachers ask me to do this more often in the recent few months than in the past 15 years of yoga classes. Dang. The first of the two days two weeks ago, I went into the pose while facing my old inner fear. I panted heavily. While I was fighting my fear, I realized that I had this other feeling... like this pose was extremely intense for my abdominal muscles. I stopped after five minutes and told my teacher I was done.
When she asked me the next day to do it again, I groaned. She asked me what was going on. I told her. She said she would show me step-by-step how to enter the pose safely and how to exit safely. As for the intensity I feel in my abdomen, she asked me to focus on where specifically as she hasn't heard of anyone complaining of that issue. Once I got the fear out of my mind, I focused on the feeling. I was able to stay in the pose for about five minutes without panting. I got out and told her where... rectus abdominis (also known as the "six-pack" muscles). She said, "Aha... those muscles must have tightened as a result of your hysterectomy." Remember how it took me so long to rebuild strength in those. Now they're tight!! Agh! She encouraged me to continue working on those muscles. The reason why this pose feels so intense is because of the gravitational pull. She proceeded to show me some poses that would work the same muscles with less intensity. Those did feel good. After the class, those muscles felt so tired. The past two weeks, I have been focusing on working on them little by little.
My teacher showed me a book called, "Iyengar Yoga Cancer Book" by Lois Steinberg that includes some suggested poses to work on those muscles. I wish I had known about this book when I was recovering from the surgeries but glad that it is available as a resource.
Saturday, July 30, 2016
Getting Lost In This Thing Called Life
Life became so busy the past few weeks as I went through several changes on top of my already overflowing plate. Somewhere along the way, I celebrated my 40th birthday as well which was wonderful! I am having a wonderful 40th year so far, although very busy! I had two publication deadlines to meet as well. The dust is slowly getting settled as I finally can sit down and breath.... and update this blog.
My experience with cancer has become somewhat a distant memory as it no longer rules my life. I did not recognize that until recently. Since then, I have been processing that realization and came up with more examples of how I have moved away from the life as a cancer patient. My aha moment was like this... On the morning of July 20th, I took a quick look at my schedule for the day (Wednesday) and what I needed to do at work that day. I thought to myself, "Five meetings...oh boy." The words "support group" under Tuesday's schedule caught my eye. Oh crap! I missed my cancer support group meeting! I remember I noticed that item on the schedule the day before when I do my daily review of the schedule for the day. Tuesday was also a busy day at work. Then I had my weekly evening writing group with other doctorate students. The meeting completely slipped from my mind. Cancer was on my mind a lot before but not lately as I continue to move forward, getting lost in living my life. I have to admit it is a nice feeling that my life no longer revolves around the big C.
This past Monday, I was reviewing my schedule for the fall semester and realized that I am teaching a course at a local college that conflicts with the support group meetings. I will attend the one next month before the semester begins and won't be able to participate again until after the semester is over in December. And I am okay with that. I am actually very excited to be teaching again.
One year later, my university decided to change insurance plans again and since I no longer live in Maryland, I was no longer eligible for insurance coverage from the Maryland's marketplace. I already purchased the new plan through my university but I was waiting for the insurance company to activate my coverage. I was going through this gap of insurance coverage with a nonchalant attitude. I think my friends were more stressed out than I was over the fact I had a gap of insurance coverage. Last year, I was so stressed out about the idea of being uninsured. I figured that I would be insured at some point and that it was a nice break from worrying about how I was going to get medical treatments.
Admittedly, I was escaping my own reality as a cancer warrior. I was given my reality check yesterday when my new oncologist's office called to remind me that I have an appointment in a couple of weeks. And that I need to make sure that Dr. Jewell's office sends all the imaging files over to them. They also asked if I was insured. I purchased my insurance plan two weeks ago and did not get stressed out over not getting my new insurance information. "Okay, okay... I'll get all that done today," I told them. And I did. I have an insurance card in my hands and... imaging files are en route. I sat last night deep in reflection. Sometime I will have moments where I am able to forget about it all. The reality is that I will have to be monitored for rest of my life.
This temporary respite was much needed and I appreciated that. It's time to get my head out of the clouds and back on the ground by returning to my effective self-care plan. First, I need to get my genetic test results figured out. I will discuss that with Dr. Angel. Since it appears that I may be at risk for breast cancer given the genetic test results, I am going to schedule a mammogram now that I have hit the age of 40. Of course, I will continue with my routine follow-up appointments. I need to schedule physical therapy because apparently I started working out too hard as soon as I got the green light. My doctor told me I couldn't swim for a few weeks as both of my shoulders are inflammed from pushing myself to do my regular one-mile swim workouts so soon. She said that it was rather common for people who return to their workout programs after major surgeries or medical issues. Oy. Yada yada. I'll get it done.
I am feeling better with each passing day. Alas, I do notice that my stamina and level of energy is not fully restored yet. I spoke with other cancer warriors and learn that the energy level is rarely restored. I hope to be an exception to that. I know I have to take care of myself in the process. Interpreting the whole day kicks my butt and makes me fall asleep by around 8 PM at night. I love the work though. I am tired after a day full of work, doing errands, and such. Yet I am proud that I have been able to keep up in kickboxing, spinning, and boot camp classes as well as getting lost in a work or academic project without giving up easily. It's just the end of day when I get really exhausted.
I continue to assess and re-assess what quality of life means to me. I am learning along the way as I make discoveries about what I love and enjoy. Some recent discoveries: 1. I realized how much I love to write.... academically and personally. Doing this blog has served as a good outlet for me and it is something I have grown to enjoy doing. I will be going back to my food blog as it was something I enjoyed doing a few years ago. I am doing some personal writing projects as well as working on various academic papers. I am back to working on my dissertation with a renewed sense of energy. 2. I still love learning. I learned how to do some yard work earlier this week, including how to edge, mow the lawn, and work a hedges trimmer (yay, me!). I am also learning how to grow and take care of herbs. I have soo much herbs and I'm having fun experimenting with them in the kitchen. 3. I appreciate opportunities I get to play! Tonight, I participated in a water-gun fight with a four-year old kid just because. It is so good to laugh and play whenever I get a chance to do so.
My experience with cancer has become somewhat a distant memory as it no longer rules my life. I did not recognize that until recently. Since then, I have been processing that realization and came up with more examples of how I have moved away from the life as a cancer patient. My aha moment was like this... On the morning of July 20th, I took a quick look at my schedule for the day (Wednesday) and what I needed to do at work that day. I thought to myself, "Five meetings...oh boy." The words "support group" under Tuesday's schedule caught my eye. Oh crap! I missed my cancer support group meeting! I remember I noticed that item on the schedule the day before when I do my daily review of the schedule for the day. Tuesday was also a busy day at work. Then I had my weekly evening writing group with other doctorate students. The meeting completely slipped from my mind. Cancer was on my mind a lot before but not lately as I continue to move forward, getting lost in living my life. I have to admit it is a nice feeling that my life no longer revolves around the big C.
This past Monday, I was reviewing my schedule for the fall semester and realized that I am teaching a course at a local college that conflicts with the support group meetings. I will attend the one next month before the semester begins and won't be able to participate again until after the semester is over in December. And I am okay with that. I am actually very excited to be teaching again.
One year later, my university decided to change insurance plans again and since I no longer live in Maryland, I was no longer eligible for insurance coverage from the Maryland's marketplace. I already purchased the new plan through my university but I was waiting for the insurance company to activate my coverage. I was going through this gap of insurance coverage with a nonchalant attitude. I think my friends were more stressed out than I was over the fact I had a gap of insurance coverage. Last year, I was so stressed out about the idea of being uninsured. I figured that I would be insured at some point and that it was a nice break from worrying about how I was going to get medical treatments.
Admittedly, I was escaping my own reality as a cancer warrior. I was given my reality check yesterday when my new oncologist's office called to remind me that I have an appointment in a couple of weeks. And that I need to make sure that Dr. Jewell's office sends all the imaging files over to them. They also asked if I was insured. I purchased my insurance plan two weeks ago and did not get stressed out over not getting my new insurance information. "Okay, okay... I'll get all that done today," I told them. And I did. I have an insurance card in my hands and... imaging files are en route. I sat last night deep in reflection. Sometime I will have moments where I am able to forget about it all. The reality is that I will have to be monitored for rest of my life.
This temporary respite was much needed and I appreciated that. It's time to get my head out of the clouds and back on the ground by returning to my effective self-care plan. First, I need to get my genetic test results figured out. I will discuss that with Dr. Angel. Since it appears that I may be at risk for breast cancer given the genetic test results, I am going to schedule a mammogram now that I have hit the age of 40. Of course, I will continue with my routine follow-up appointments. I need to schedule physical therapy because apparently I started working out too hard as soon as I got the green light. My doctor told me I couldn't swim for a few weeks as both of my shoulders are inflammed from pushing myself to do my regular one-mile swim workouts so soon. She said that it was rather common for people who return to their workout programs after major surgeries or medical issues. Oy. Yada yada. I'll get it done.
I am feeling better with each passing day. Alas, I do notice that my stamina and level of energy is not fully restored yet. I spoke with other cancer warriors and learn that the energy level is rarely restored. I hope to be an exception to that. I know I have to take care of myself in the process. Interpreting the whole day kicks my butt and makes me fall asleep by around 8 PM at night. I love the work though. I am tired after a day full of work, doing errands, and such. Yet I am proud that I have been able to keep up in kickboxing, spinning, and boot camp classes as well as getting lost in a work or academic project without giving up easily. It's just the end of day when I get really exhausted.
I continue to assess and re-assess what quality of life means to me. I am learning along the way as I make discoveries about what I love and enjoy. Some recent discoveries: 1. I realized how much I love to write.... academically and personally. Doing this blog has served as a good outlet for me and it is something I have grown to enjoy doing. I will be going back to my food blog as it was something I enjoyed doing a few years ago. I am doing some personal writing projects as well as working on various academic papers. I am back to working on my dissertation with a renewed sense of energy. 2. I still love learning. I learned how to do some yard work earlier this week, including how to edge, mow the lawn, and work a hedges trimmer (yay, me!). I am also learning how to grow and take care of herbs. I have soo much herbs and I'm having fun experimenting with them in the kitchen. 3. I appreciate opportunities I get to play! Tonight, I participated in a water-gun fight with a four-year old kid just because. It is so good to laugh and play whenever I get a chance to do so.
Saturday, June 4, 2016
EFF CANCER!
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.
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.
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.
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