We have been in New York City since last Friday. The pre-op tests and review were done on Friday. I am physically fit for the surgery tomorrow. It has felt like the universe is screwing with me. The nurse practitioner who was sent to discuss pre-op preparations with me was pregnant and kept on rubbing her belly. Ouch. We agree that MSKCC could be more sensitive and not assign pregnant staff to work with young women who have to get hysterectomy.
Yesterday we boarded the Staten Island Ferry to get a view of the Statue of Liberty only to be turned back to the terminal after a few minutes. We asked someone what was going on. A pregnant woman's water broke just as we left the terminal. I thought that was bizarre. Why am I surrounded by pregnant women all of a sudden?
It's hard to believe the big day is tomorrow. I am not quite ready. Logistically speaking I am ready. The house is set up for recovery. The freezer was stuffed full. I have my hospital backpack ready with important necessities. Am I emotionally ready? I'm not sure. I have been keeping myself very busy with preparations and working long hours to finish up a couple of projects at work before being out for two weeks. And I finished at 1 AM last night. Being busy helped take my mind off it. I was becoming very aware of the day approaching yesterday because it was the last day I could eat solids. I certainly enjoyed the yummy food the Little Italy had to offer! Today I am drinking clear liquids: water, hot tea, clear juices, broth. I am hungry! The sight and smell of food are driving me crazy. I will get through today! What has helped a lot is getting some money from a friend to help with travel costs from home to New York. We decided to use some money to get a hotel room at a very good deal. It's a good place to be before my surgery to relax and lock myself away from all the smells of food. It's a mile from the hospital. My surgery is scheduled for 9 AM tomorrow morning. I check in at 7 AM to be prepped. I told Mike I wanted to walk from the hotel to the hospital. The walk itself would calm my nerves. I am stressed out at this moment but am forcing myself to chill out this evening. I will need to disconnect myself from Facebook and my phone until after the surgery so I don't get more nervous with all the well wishes coming my way. And I will capitalize on my last baths for six to eight weeks by reading some magazines and watching a movie on my iPad while bathing.
I remember reading somewhere recently about how the oncologist and the patient have different mindsets. The oncologist is focused on saving lives and surgeries like the one I will have tomorrow is a way to save my life. It means a success story for the oncologist. The patient does not focus on that 'success' but becomes concerned about how his/her own body will be different after the surgery. That's what has been on my mind the past few weeks. I spoke with women who had hysterectomy and they said that if I keep my ovaries, the change is more in the 'mind' rather than physical. Let's hope I do not overthink this change because I need to quickly adapt to the life without my uterus, cervix, and tubes.
One thing that was recommended that I do before the surgery is to write a letter to my uterus. I have been avoiding this until today. This letter was written as my feelings came out. There were no edits.
Dear Uterus,
A month ago, I was really pissed off that you gave up and let the cancer cells take control. You let the cancer line up in my endometrium. Today, I actually feel sorry for you. I feel sorry that you couldn't stay strong for me. I am sad that you did not fight hard enough to ensure I could have a shot at being pregnant at least once. But hey, thanks for giving me some warning signs that there was something wrong by making me go into pain and losing blood. I just hope that the cancer was caught early enough.
You have been with me since I was born. You were there when I got my first period when I was 12. You surprised me when I was not ready to be a woman. But I rolled with your timeline. Some of the cramps you gave me were awful so I am not going to miss you for that part. You scared me by not menstruating some months throughout the years. I learned that I had other medical issues that just stopped you from functioning. Now this cancer thing. I knew that you have paid your dues and it is time for you to go.
I hoped that the hormone therapy would have helped you get better. The hormone therapy, unfortunately, did not make me feel good. I stopped last Tuesday night, wondering what kind of effects that would have on you. I was happy that the nosebleeds stopped the day after my last dosage. Yesterday, I had spotting which tells me that the hormone therapy did not get rid of the cancer. The spotting told me that the cancer acted up. I felt sorry for your pain.
Now I am almost 39 years old and it is time to say goodbye to you. I am sorry you will be yanked out of my body and sent to a cold, clinical lab where a pathologist will examine you closely to determine how much damage the cancer has created. This will tell me the stage of my cancer. Then they will store you in a refrigerator for a while until they are satisfied that no further tests would be needed. I guess you will be disposed of at that point.
For what it was worth, thank you for being a part of my life. I bid thee farewell.
Naomi
Sunday, March 29, 2015
Wednesday, March 25, 2015
Figuring Out What Support System I Need
Since getting my diagnosis over three months ago, I have been navigating my way through the world trying to figure out what support system I needed to get through this cancer journey. Just last Sunday, I finally found the support that has been very helpful. Her name is April Carver. She is a fictional character in a TV show called, "Chasing Life" who was diagnosed with leukemia. I felt I could really relate to her. And... she does not talk back, suggest unsolicited ideas, impose opinions on me, or use fear tactics on me.
When I first found out I had cancer, I texted a few friends with this short message, "Lab results just came back- cancer." Just like that. Then I went into my own bubble. My friends wanted to know more but I really did not know anything at that point. I did not know what to think nor feel. I was shocked. It was like the world stopped. And the world was waiting for me to tell it to keep on turning. The problem is though I did not know how I wanted it to turn. I just figured it out as I took the next step. Baby steps. Sometime my steps surprised me because they led me where I would have not gone.
After getting over the initial shock, I realized that I needed to figure out a support system to get through this, whatever that looked like. I withdrew from my friends who were pregnant. Sure, I am happy for them but it is difficult at this time as I struggle with the fact I cannot ever be pregnant. I decided to reveal the news of my cancer on Facebook. Friends from far away or nearby immediately stepped in to support me. New and old friends emerged. I got a good number of friend requests from people I did not know. Some friends retreated. Friends who survived cancer came forward with meaningful nuggets of wisdom. Reactions and responses varied. I was surprised most of the time. I was overwhelmed at times. I felt appreciative at times. A woman who is battling cancer commented, "No one knows what the right word to say to you and they take everything so personal if we say or did not say anything. Dealing with family and friends are probably difficult than the disease itself. It's gonna be an emotional roller coaster, that's for sure." Some days, I just want to hide out in my own little bubble and shut out the world. I always want to take care of people. I feel like I have to take care of others by responding to their messages or assure them I was not gonna die next week. I have learned that I really need to take care of myself during this time. I need all the time and energy I can get to beat this cancer. I do not have time to deal with people asking me why I am not talking with them. Be ready to listen when I need to talk. I will ask for help when I need it. I rarely ask for help and when I ask for help, I seriously need help like I asked for help with meals following the surgery.
Interestingly, many friends always seem to suggest unsolicited idea to solve a problem I was having at the time. I understand it comes from them wanting to feel good for giving me an idea. Believe me, I have not left any stone unturned. If you know me, I do research to no end. All avenues have been explored. So when I hear an idea, I would feel shot down, thinking, "Already looked into that one."
I was trying to figure how to manage all that PLUS figure out how to deal with this cancer. I craved connection with other women who had endometrial cancer to help me process or at least survivors of any cancer. I signed up for a mentor through a group who has been pretty helpful. I joined several online support groups in hopes they would help me process. And I learned from the whole process that the support groups do more harm than good. Sadly, they do.
The first support group I joined... none of the women knew what to do with me. All of them got endometrial cancer after menopause. I left quickly.
The second support group I joined had a woman who was anti-hysterectomy. She was telling me to go to her oncologist because she won't have surgery. She's been on megestrol and increasing dosage constantly for the past two years. I hated being on megestrol and was RELIEVED to stop yesterday. This group was in support of staying on hormone therapy for as long as it takes to get pregnant even if the hormone therapy hurts their bodies like it has for me. And the group continues to look for reasons WHY they have endometrial cancer making me wonder about what I did wrong in the past that led to the cancer. I left this group.
I joined a support group that was moderated by a social worker. I thought that one would be safe. Not so. A woman in there said that God had plans for me when I spoke of my fears of hysterectomy and that I should jump right on board for whatever my oncologist tells me to do. Hmmm. In the same group, a woman was expressing her anger for having poor treatment in her small town in Tennessee. I thought the support group was the right place for her to rant. I did a little ranting myself. I could relate to her story because I felt I was getting not so great treatment from Dr. Diaz-Montes. I feel fortunate that I could travel to New York City to work with Dr. Jewell. Another woman got upset with her for ranting. The social worker kicked the ranting woman out. Huh? I thought it was a safe place to rant. Later, I announced my surgery. A woman told me that not to have the surgery until I talk with a woman she knew that is in her second trimester of pregnancy with her endometrial cancer in remission. Well... again. I have turned all stones. I have become withdrawn since then with this group.
I joined another support group. I got religious stuff suggesting that God intended for me to suffer with this. Hmm. If someone was to say to me ten years later that my blog has helped so many women, I would feel touched that my journey was helpful to others. That is for LATER. I really do not need to hear stuff like, "God intended for you to get this cancer." I also got posts that said it is my fault for getting cancer. Really? I left that group.
I joined once another support group. And that group was full of fear tactics. Made me fear my cancer. Made me fear my surgery. Tonight I was about to freak out. A friend who has cancer and had hysterectomy intervened by calling me on FaceTime. She commented that she found that support groups were NOT helpful to her either. I left that support group.
What really helped... HysterSisters. Their website is full of information and tips. I could opt to join in their discussion forums but I haven't found those helpful for the same reason I did not find support groups helpful. I found their pre-op and post-op resource pages very helpful.
I am going to wrap up my day by watching another episode of "Chasing Life" because it is the safest type of support for me. I am finding parallels between her journey and mine. She struggled with her diagnosis at first just like I did. She did not want to tell people at the beginning. She felt obliged to take care of others. People overwhelmed her with their ideas of what she needs to do. She postponed her treatment in order to understand what she is about to go through. She finds meaningful connection with people who has had cancer. It feels like she totally gets me and vice versa.
When I first found out I had cancer, I texted a few friends with this short message, "Lab results just came back- cancer." Just like that. Then I went into my own bubble. My friends wanted to know more but I really did not know anything at that point. I did not know what to think nor feel. I was shocked. It was like the world stopped. And the world was waiting for me to tell it to keep on turning. The problem is though I did not know how I wanted it to turn. I just figured it out as I took the next step. Baby steps. Sometime my steps surprised me because they led me where I would have not gone.
After getting over the initial shock, I realized that I needed to figure out a support system to get through this, whatever that looked like. I withdrew from my friends who were pregnant. Sure, I am happy for them but it is difficult at this time as I struggle with the fact I cannot ever be pregnant. I decided to reveal the news of my cancer on Facebook. Friends from far away or nearby immediately stepped in to support me. New and old friends emerged. I got a good number of friend requests from people I did not know. Some friends retreated. Friends who survived cancer came forward with meaningful nuggets of wisdom. Reactions and responses varied. I was surprised most of the time. I was overwhelmed at times. I felt appreciative at times. A woman who is battling cancer commented, "No one knows what the right word to say to you and they take everything so personal if we say or did not say anything. Dealing with family and friends are probably difficult than the disease itself. It's gonna be an emotional roller coaster, that's for sure." Some days, I just want to hide out in my own little bubble and shut out the world. I always want to take care of people. I feel like I have to take care of others by responding to their messages or assure them I was not gonna die next week. I have learned that I really need to take care of myself during this time. I need all the time and energy I can get to beat this cancer. I do not have time to deal with people asking me why I am not talking with them. Be ready to listen when I need to talk. I will ask for help when I need it. I rarely ask for help and when I ask for help, I seriously need help like I asked for help with meals following the surgery.
Interestingly, many friends always seem to suggest unsolicited idea to solve a problem I was having at the time. I understand it comes from them wanting to feel good for giving me an idea. Believe me, I have not left any stone unturned. If you know me, I do research to no end. All avenues have been explored. So when I hear an idea, I would feel shot down, thinking, "Already looked into that one."
I was trying to figure how to manage all that PLUS figure out how to deal with this cancer. I craved connection with other women who had endometrial cancer to help me process or at least survivors of any cancer. I signed up for a mentor through a group who has been pretty helpful. I joined several online support groups in hopes they would help me process. And I learned from the whole process that the support groups do more harm than good. Sadly, they do.
The first support group I joined... none of the women knew what to do with me. All of them got endometrial cancer after menopause. I left quickly.
The second support group I joined had a woman who was anti-hysterectomy. She was telling me to go to her oncologist because she won't have surgery. She's been on megestrol and increasing dosage constantly for the past two years. I hated being on megestrol and was RELIEVED to stop yesterday. This group was in support of staying on hormone therapy for as long as it takes to get pregnant even if the hormone therapy hurts their bodies like it has for me. And the group continues to look for reasons WHY they have endometrial cancer making me wonder about what I did wrong in the past that led to the cancer. I left this group.
I joined a support group that was moderated by a social worker. I thought that one would be safe. Not so. A woman in there said that God had plans for me when I spoke of my fears of hysterectomy and that I should jump right on board for whatever my oncologist tells me to do. Hmmm. In the same group, a woman was expressing her anger for having poor treatment in her small town in Tennessee. I thought the support group was the right place for her to rant. I did a little ranting myself. I could relate to her story because I felt I was getting not so great treatment from Dr. Diaz-Montes. I feel fortunate that I could travel to New York City to work with Dr. Jewell. Another woman got upset with her for ranting. The social worker kicked the ranting woman out. Huh? I thought it was a safe place to rant. Later, I announced my surgery. A woman told me that not to have the surgery until I talk with a woman she knew that is in her second trimester of pregnancy with her endometrial cancer in remission. Well... again. I have turned all stones. I have become withdrawn since then with this group.
I joined another support group. I got religious stuff suggesting that God intended for me to suffer with this. Hmm. If someone was to say to me ten years later that my blog has helped so many women, I would feel touched that my journey was helpful to others. That is for LATER. I really do not need to hear stuff like, "God intended for you to get this cancer." I also got posts that said it is my fault for getting cancer. Really? I left that group.
I joined once another support group. And that group was full of fear tactics. Made me fear my cancer. Made me fear my surgery. Tonight I was about to freak out. A friend who has cancer and had hysterectomy intervened by calling me on FaceTime. She commented that she found that support groups were NOT helpful to her either. I left that support group.
What really helped... HysterSisters. Their website is full of information and tips. I could opt to join in their discussion forums but I haven't found those helpful for the same reason I did not find support groups helpful. I found their pre-op and post-op resource pages very helpful.
I am going to wrap up my day by watching another episode of "Chasing Life" because it is the safest type of support for me. I am finding parallels between her journey and mine. She struggled with her diagnosis at first just like I did. She did not want to tell people at the beginning. She felt obliged to take care of others. People overwhelmed her with their ideas of what she needs to do. She postponed her treatment in order to understand what she is about to go through. She finds meaningful connection with people who has had cancer. It feels like she totally gets me and vice versa.
Monday, March 23, 2015
The Surgery: The Whole Process
This morning I got an email from HysterSisters reminding me of checkpoints to prepare for my surgery next week. HysterSisters has been a great resource for me and I highly recommend their website for any woman who need this surgery. I have been busy preparing for the surgery, making sure I had
everything I needed at home to ensure comfortable recovery. I have been
cooking up a storm to stuff the freezer with meals as I will be unable
to cook for a while. That is one thing I will miss very much. The past
two months, cooking has been a therapeutic activity for me as I dealt
with this cancer. For most part, I am almost ready other than needing
to cook a few more meals to freeze this week. I am not emotionally or mentally
ready. It is a life-changing surgery and that terrifies me. I also
struggle with the idea I will be unable to do many normal activities for
six to eight weeks. I am a Type-A personality and always on the go.
Now I have to rest for that long. I really do not like that idea but
have come to accept that it is necessary to ensure a longer life.
On Monday, March 30th, I will have a two-hour surgery called the da Vinci hysterectomy with sentinel lymph node resection. Dr. Jewell will be removing my cervix, uterus, and Fallopian tubes laparoscopically assisted by a robotic system called the da Vinci system. This is a minimally invasive surgery. What's going to happen during the surgery?
First, they will fill my abdomen with carbon dioxide (an inert gas) to create a large space for the surgeon. The gas applies pressure that compresses tissues. As a result, I will experience minimal bleeding as compared to an open surgery. The day before the surgery, I will be on a liquid, dairy-free diet to help clear my body for the gas that will fill up. It is the gas that makes many women feel very uncomfortable after surgery.
Next, she will make five incisions in my abdomen - the top two incisions are 10 mm wide and the bottom three 8 mm wide. Traditionally, hysterectomies are done by cutting up the uterus into small pieces for removal through abdomen using a power morcellator. However for women with uterine cancer, that must not be done. They need the uterus in one piece for the pathologist to accurately stage the cancer. Plus if the uterus was cut, there's the risk of the cancer cells being spread to another part of the body namely the vagina or the area where the uterus used to be. This happened to a woman during her surgery: http://www.nytimes.com/2014/04/18/health/fda-tells-doctors-to-stop-procedure-used-to-remove-uterine-fibroids.html?_r=0.
Cuts will be made to disconnect the tubes, uterus, and cervix through cutting and cauterizing. Then she will carefully remove everything vaginally. Next, she will do sentinel lymph node dissection. At our last appointment, Dr. Jewell explained the latest research on lymphadenectomy. In United States, the typical approach is to remove all of the regional lymph nodes near where the cancer was found. In Europe, they remove only those that should be removed (sentinel lymph nodes). Comparative studies were done and there is no difference in the cancer progression between those two approaches. In order to reduce the risk of lymphedema which is usually the result of removing too many lymph nodes, they will just remove some. In order to figure out which ones to remove, insert blue radioactive dye into the pelvic area to look for lymph nodes that become stained with the color blue. Those will then be removed.
The last step is to close the end of my vagina where the cervix once was, which will become my vaginal cuff. The uterosacral ligaments are secured with the vaginal cuff. The recovery of my vaginal cuff is very important. Thus, that is why I cannot do many things for six to eight weeks to ensure full recovery, including lifting anything over six pounds or working out. If I do not follow instructions, I run the risk of having another surgery to reconstruct the vaginal cuff. They will use a mix of dissolvable stitches- some will dissolve in six weeks, while some will dissolve in six months.
If Dr. Jewell can see there's something wrong with my ovaries during the surgery, she will have to remove them. We agree that the goal is to keep both or at least one ovary. If I lose my ovaries, I have 50% overall higher risk of mortality, along with numerous health risks. If she sees that it is too complicated to do the laparoscopy surgery, she will do an open surgery. If all goes well, I will be in the hospital for one night and go home the next day. If it ends up being an open surgery, I have to stay in the hospital for three to five days. I will not be discharged from the hospital until I can urinate and can walk.
The removed cervix, uterus, tubes, and lymph nodes will then be sent to the pathology to stage my cancer. I will not know my stage until the follow-up appointment with Dr. Jewell on April 14th. My post-op appointment is on May 12th to see if my vaginal cuff has recovered and to get the green light to resume all of my normal activities.
The first two weeks, I will be heavily medicated with pain medications. I will be sleeping a lot. But I am required to walk around a bit throughout the day. During the third week, I can resume some normal activities again but it will be a struggle. I have been learning a lot about the post-operation experience from other women through HysterSisters to help me prepare. Many of them said that even a simple task of showering is so exhausting that one needs a nap after. I will probably be napping a lot during the weeks 3 and 4. Once Dr. Jewell gives me the green light to resume my normal activities, I will still feel tired often as my body slowly recover. I probably will not feel completely like myself again for six to twelve months. The way I see it, the megestrol (hormone therapy) prepared me for that because I am a lot more tired those days.
Speaking of which, I am thrilled that my last day of hormone therapy is tomorrow. Usually, patients are advised to keep on taking megestrol until the day before surgery so it keeps the cancer at bay. I told Dr. Jewell that I was going to run out of my month's supply of megestrol on Tuesday. She told me not to get a refill and it's just five days without treatment. I am happy to have a break in between treatments.
On Monday, March 30th, I will have a two-hour surgery called the da Vinci hysterectomy with sentinel lymph node resection. Dr. Jewell will be removing my cervix, uterus, and Fallopian tubes laparoscopically assisted by a robotic system called the da Vinci system. This is a minimally invasive surgery. What's going to happen during the surgery?
First, they will fill my abdomen with carbon dioxide (an inert gas) to create a large space for the surgeon. The gas applies pressure that compresses tissues. As a result, I will experience minimal bleeding as compared to an open surgery. The day before the surgery, I will be on a liquid, dairy-free diet to help clear my body for the gas that will fill up. It is the gas that makes many women feel very uncomfortable after surgery.
Next, she will make five incisions in my abdomen - the top two incisions are 10 mm wide and the bottom three 8 mm wide. Traditionally, hysterectomies are done by cutting up the uterus into small pieces for removal through abdomen using a power morcellator. However for women with uterine cancer, that must not be done. They need the uterus in one piece for the pathologist to accurately stage the cancer. Plus if the uterus was cut, there's the risk of the cancer cells being spread to another part of the body namely the vagina or the area where the uterus used to be. This happened to a woman during her surgery: http://www.nytimes.com/2014/04/18/health/fda-tells-doctors-to-stop-procedure-used-to-remove-uterine-fibroids.html?_r=0.
Cuts will be made to disconnect the tubes, uterus, and cervix through cutting and cauterizing. Then she will carefully remove everything vaginally. Next, she will do sentinel lymph node dissection. At our last appointment, Dr. Jewell explained the latest research on lymphadenectomy. In United States, the typical approach is to remove all of the regional lymph nodes near where the cancer was found. In Europe, they remove only those that should be removed (sentinel lymph nodes). Comparative studies were done and there is no difference in the cancer progression between those two approaches. In order to reduce the risk of lymphedema which is usually the result of removing too many lymph nodes, they will just remove some. In order to figure out which ones to remove, insert blue radioactive dye into the pelvic area to look for lymph nodes that become stained with the color blue. Those will then be removed.
The last step is to close the end of my vagina where the cervix once was, which will become my vaginal cuff. The uterosacral ligaments are secured with the vaginal cuff. The recovery of my vaginal cuff is very important. Thus, that is why I cannot do many things for six to eight weeks to ensure full recovery, including lifting anything over six pounds or working out. If I do not follow instructions, I run the risk of having another surgery to reconstruct the vaginal cuff. They will use a mix of dissolvable stitches- some will dissolve in six weeks, while some will dissolve in six months.
If Dr. Jewell can see there's something wrong with my ovaries during the surgery, she will have to remove them. We agree that the goal is to keep both or at least one ovary. If I lose my ovaries, I have 50% overall higher risk of mortality, along with numerous health risks. If she sees that it is too complicated to do the laparoscopy surgery, she will do an open surgery. If all goes well, I will be in the hospital for one night and go home the next day. If it ends up being an open surgery, I have to stay in the hospital for three to five days. I will not be discharged from the hospital until I can urinate and can walk.
The removed cervix, uterus, tubes, and lymph nodes will then be sent to the pathology to stage my cancer. I will not know my stage until the follow-up appointment with Dr. Jewell on April 14th. My post-op appointment is on May 12th to see if my vaginal cuff has recovered and to get the green light to resume all of my normal activities.
The first two weeks, I will be heavily medicated with pain medications. I will be sleeping a lot. But I am required to walk around a bit throughout the day. During the third week, I can resume some normal activities again but it will be a struggle. I have been learning a lot about the post-operation experience from other women through HysterSisters to help me prepare. Many of them said that even a simple task of showering is so exhausting that one needs a nap after. I will probably be napping a lot during the weeks 3 and 4. Once Dr. Jewell gives me the green light to resume my normal activities, I will still feel tired often as my body slowly recover. I probably will not feel completely like myself again for six to twelve months. The way I see it, the megestrol (hormone therapy) prepared me for that because I am a lot more tired those days.
Speaking of which, I am thrilled that my last day of hormone therapy is tomorrow. Usually, patients are advised to keep on taking megestrol until the day before surgery so it keeps the cancer at bay. I told Dr. Jewell that I was going to run out of my month's supply of megestrol on Tuesday. She told me not to get a refill and it's just five days without treatment. I am happy to have a break in between treatments.
Saturday, March 21, 2015
The Fight for Accessibility
I am beyond exhausted. Phew. The past three weeks I had been fighting with the interpreter coordinator at the Memorial Sloan-Kettering Cancer Center for better accessibility... namely quality sign language interpreting services. Yesterday, he finally agreed to change. By the end of day yesterday, I learned that I will be working with some of the top interpreters in New York City for my pre-op testing, surgery, and hospital stay. I felt relieved. Then I crashed early feeling exhausted.
Having cancer takes a lot of time and energy. Seriously. A friend who survived breast cancer sent me a note in the mail, "Fighting the cancer is exhausting; emotionally, physically, and mentally. Give yourself plenty of rest."
What rest? Now on top of it all, I had to fight for quality interpreting services. In the past, I would get interpreters for my medical appointments. Sure sometime the interpreter was not too great but I got an interpreter. Now with my cancer, I have had to fight!?! Bizarre.
The first appointment with Dr. Diaz-Montes, I got slapped with a VRI machine which crashed. No interpreter. The second opinion with a local oncologist-- they wanted to use VRI but I said no way. They insisted on VRI. I insisted on an on-site interpreter. The hospital agreed to send an on-site interpreter out of their budget but the office still refuse to request an on-site interpreter. My third opinion or as we also call bias-free second opinion with Dr. Jewell-- we got a Spanish interpreter? Oops... then they tried to make VRI work which did not. No interpreter. A friend called via FaceTime to interpret.
The interpreter coordinator at MSKCC apologized for their blunder at my first appointment at MSKCC and promised they would do better going forward. I have had to fight for the past three weeks for better quality interpreting services. For my second appointment, they wanted to go with a foreign language interpretation agency, Just Interpretation, and assigned a non-certified interpreter. I did not know who the assigned interpreter was. I asked my local New York City interpreter friends if they knew her. Nope. I tried to find any information about her online but could not. I decided to try something new. Post her name on Facebook and see what information I can get. Social media can be a powerful tool! And it indeed proved to be that night. Nobody knew that interpreter. I was able to track down her email address and asked her the questions listed below. Any Deaf consumer should ask any interpreters those questions.
1. How long have you been interpreting professionally?
2. How many of those years have you done medical interpreting?
3. Have you done interpreting for oncology appointments?
4. Have you taken the NIC written exam yet?
5. What are your plans in getting nationally certified?
6. What are you doing to maintain your professional development? Are you involved with the local Deaf organizations in New York City? What about the local RID chapter?
7. How do you feel about your voicing skills? Will you please give me a honest assessment? I ask this because I will be talking quite a bit and fingerspelling some medical jargon.
I was truthfully impressed she did respond to my email in detail. She also said she had to give the job back because she was sick. I replied making suggestions on how she can make herself known in the Deaf community in New York City. Get involved in the Deaf community by attending events and meeting Deaf people. Get involved with MetroRID to network with other interpreters. One interpreter suggested that she establishes a web presence. I passed that suggestion along. From her email, she sounded like she had potential to grow into a wonderful interpreter later on. It is up to her to make herself known. I certainly hope she does.
So what's my beef with foreign language translation agencies? A lot. First, foreign language interpreters/ translators are a whole different group from sign language interpreters. Those companies know that profession but do not know anything about the sign language interpreting profession. For starters, most spoken language interpreters grew up speaking the languages that they interpret later in life. Most sign language interpreters do not. Many of them learn sign language at an interpreter education program which usually last only two years. Thus, in two years they learn American Sign Language PLUS how to interpret either consecutively and simultaneously. Quite frankly, that is not enough. As a result , many sign language interpreters do not have strong language foundation before they interpret. As a consequence, Deaf consumers suffer. Now what do RID certificates mean? If an interpreter gets certified by RID, it just means that they have fulfilled the MINIMUM requirements. Remember, tests are just snapshots of the moment they took the test. I have seen numerous interpreters who do not do well in the profession excel on the test. I call them adept test takers but not qualified interpreters. I usually ask for certified interpreters so I can get some kind of minimal performance but I prefer to aim higher- a qualified interpreter who can elucidate information from spoken English to American Sign Language and vice versa.
Having cancer takes a lot of time and energy. Seriously. A friend who survived breast cancer sent me a note in the mail, "Fighting the cancer is exhausting; emotionally, physically, and mentally. Give yourself plenty of rest."
What rest? Now on top of it all, I had to fight for quality interpreting services. In the past, I would get interpreters for my medical appointments. Sure sometime the interpreter was not too great but I got an interpreter. Now with my cancer, I have had to fight!?! Bizarre.
The first appointment with Dr. Diaz-Montes, I got slapped with a VRI machine which crashed. No interpreter. The second opinion with a local oncologist-- they wanted to use VRI but I said no way. They insisted on VRI. I insisted on an on-site interpreter. The hospital agreed to send an on-site interpreter out of their budget but the office still refuse to request an on-site interpreter. My third opinion or as we also call bias-free second opinion with Dr. Jewell-- we got a Spanish interpreter? Oops... then they tried to make VRI work which did not. No interpreter. A friend called via FaceTime to interpret.
The interpreter coordinator at MSKCC apologized for their blunder at my first appointment at MSKCC and promised they would do better going forward. I have had to fight for the past three weeks for better quality interpreting services. For my second appointment, they wanted to go with a foreign language interpretation agency, Just Interpretation, and assigned a non-certified interpreter. I did not know who the assigned interpreter was. I asked my local New York City interpreter friends if they knew her. Nope. I tried to find any information about her online but could not. I decided to try something new. Post her name on Facebook and see what information I can get. Social media can be a powerful tool! And it indeed proved to be that night. Nobody knew that interpreter. I was able to track down her email address and asked her the questions listed below. Any Deaf consumer should ask any interpreters those questions.
1. How long have you been interpreting professionally?
2. How many of those years have you done medical interpreting?
3. Have you done interpreting for oncology appointments?
4. Have you taken the NIC written exam yet?
5. What are your plans in getting nationally certified?
6. What are you doing to maintain your professional development? Are you involved with the local Deaf organizations in New York City? What about the local RID chapter?
7. How do you feel about your voicing skills? Will you please give me a honest assessment? I ask this because I will be talking quite a bit and fingerspelling some medical jargon.
I was truthfully impressed she did respond to my email in detail. She also said she had to give the job back because she was sick. I replied making suggestions on how she can make herself known in the Deaf community in New York City. Get involved in the Deaf community by attending events and meeting Deaf people. Get involved with MetroRID to network with other interpreters. One interpreter suggested that she establishes a web presence. I passed that suggestion along. From her email, she sounded like she had potential to grow into a wonderful interpreter later on. It is up to her to make herself known. I certainly hope she does.
So what's my beef with foreign language translation agencies? A lot. First, foreign language interpreters/ translators are a whole different group from sign language interpreters. Those companies know that profession but do not know anything about the sign language interpreting profession. For starters, most spoken language interpreters grew up speaking the languages that they interpret later in life. Most sign language interpreters do not. Many of them learn sign language at an interpreter education program which usually last only two years. Thus, in two years they learn American Sign Language PLUS how to interpret either consecutively and simultaneously. Quite frankly, that is not enough. As a result , many sign language interpreters do not have strong language foundation before they interpret. As a consequence, Deaf consumers suffer. Now what do RID certificates mean? If an interpreter gets certified by RID, it just means that they have fulfilled the MINIMUM requirements. Remember, tests are just snapshots of the moment they took the test. I have seen numerous interpreters who do not do well in the profession excel on the test. I call them adept test takers but not qualified interpreters. I usually ask for certified interpreters so I can get some kind of minimal performance but I prefer to aim higher- a qualified interpreter who can elucidate information from spoken English to American Sign Language and vice versa.
I totally understand why MSKCC might find
contracts with Just Interpretation and similar type of agencies
appealing. It means one-stop shop. One bill for all interpreting
services. Convenient, eh? BUT it is at the expense of Deaf consumers' accessibility.
Foreign language translation agencies are catching on quickly that
there is MONEY in the American Sign Language interpreting
and they want in. Sadly, they know NOTHING about the profession and
about the Deaf community. In fact, I have filed complaints against
those companies because they usually send interpreters with poor
skills. Why? They do not know anything about the sign language interpreting profession and how to ensure quality assurance.
My first experience with a foreign language interpretation company was with Language People who conveniently created a subdivision of their company called Sign Language People to make themselves seem credible. I was in the ER at Kaiser in San Diego and they sent an interpreter that I have never heard of. I was living in San Diego and working in the sign language interpreting profession long enough to know many local interpreters. She arrived late. She ran up to me in shorts and flip-flops. She put her hands on me while I was laying in a bed. "Are you okay???!!!! What happened?" One would have thought she was a friend of mine being overly concerned. No, she was supposed to be my interpreter. Luckily I had a Deaf friend with me who could speak well who helped ensure communication access was there. She was not certified. She was certainly not qualified. I contacted the company to express my disappointment. They ignored me. I have made additional complaints for other interpreters they sent to my Kaiser appointments. They ignored me. In the end, they accused me of violating the RID's CPC Tenet 5.0: Respect for colleagues. They felt that as a certified interpreter, I was not respecting my colleagues. Huh? I was utilizing their services as a Deaf consumer NOT as an interpreter.
From that experience, I knew I had to stay far away from those companies. If I find they are being used for my medical appointments, I would insist on going with a sign language interpreting agency. For the past few years, I have been lucky in convincing my doctor offices to go with sign language interpreting agencies. I was not as lucky with MSKCC. I decided to see if Just Interpretation was unique. Nope. They're as bad as others.
I am an administrator of a sign language interpreting agency. Our company and similar companies value the relationship
with the Deaf community. We know our Deaf clients very well and their
preferred types of interpreters. We also know our sign language
interpreters well and what they are capable of. I can tell you off the
bat which interpreters my agency should send to
medical appointments and which not to. I can identify which
interpreters would be better suited for educational settings. Keep in
mind not all sign language interpreters can do ANY job. It's about
finding the right fit. A good sign language interpreter
is the one who is involved with the professional community as well as
Deaf community to keep up with skills, training, and language
development.
Foreign language translation companies like
Just Interpretation do not take the time to know each
of their interpreter individually to determine appropriate assignments.
Nor do they allow for dialogues with Deaf clients about their
preferences and non-preferences. They are really in it for the money. Sign language interpreting agencies do
have that level of relationship with the Deaf clients. In fact, I tried to call Just Interpretation before my 3/12 appointment to see if I could talk with them about the type of interpreters I prefer. They would not take my call and said that they only deal with the paying customers, namely MSKCC. That was exactly what Sign Language People said to me. Ugh.
After learning that the assigned interpreter gave back the job, I immediately contacted the MSKCC interpreter coordinator to ask who they were sending next. There was silence for two days. Ugh. Finally, someone else replied saying that they had a certified interpreter assigned. It was not clear if the interpreter was coming from Just Interpretation or a sign language interpreting agency.
The 3/12 appointment came. We found the interpreter coordinator and the SAME Spanish interpreter in the waiting room. I met the assigned interpreter and asked which agency sent her. Just Interpretation. Ugh. I was concerned about the quality. In fact as a result of my Facebook posting, a top interpreter in NYC volunteered to interpret the appointment if we needed her. She said she refused to work with Just Interpretation but wanted to ensure I had access. I appreciated that offer of kindness and to this day, I wish I had taken it. The communication was fragmented during the testing and the consultation on 3/12. I was frustrated. It was clear that the MSKCC interpreter coordinator and the Spanish interpreter told the interpreter about what happened at the first appointment because the interpreter was a nervous Nelly around us. It frustrated me. Mike decided to talk with her and tell her that we won't bite. She insisted she was not nervous. She missed a lot of information. She struggled to understand me which compelled Mike to voice for me. I felt so bad for Mike because he was supposed to be there as my partner and supporter NOT as my interpreter.
I learned that the MSKCC interpreter coordinator assumed that I was happy with the interpreter when we all met in the waiting room. I told him that this was a terrible assumption on his part. I never told him about my level of satisfaction until after the appointment. I just nodded at the interpreter coordinator to
confirm he has done his part in assigning an interpreter. Coverage
was there. I needed time with her to assess her skills. Mike and I
agreed that she is not a good fit. She definitely
needs additional training to be an effective interpreter in medical settings.
As a result of the MSKCC interpreter coordinator's bad assumption, the same interpreter got assigned for my pre-op appointment on 3/27. I said, NO! I needed a sign language interpreter who was capable to interpret both ways without forcing Mike into a position to interpret. I told the coordinator that it was time to stop working with Just Interpretation for all of my future appointments and to work with a sign language interpreting agency. I learned from local Deaf people and interpreters that MSKCC does have an ongoing contract with Mill Neck Interpreter Service. An interpreter told me she got assigned a job at MSKCC for a different patient. I decided to use the ongoing contract as my argumentation and kept on pushing and pushing. Yesterday, the interpreter coordinator finally caved in and agreed to go with Mill Neck. THEN I contacted Mill Neck directly to develop a relationship with them. I explained to them that I am an out-of-towner and I did not know many interpreters in New York City. I described what type of interpreters and the skill sets they should have. Their scheduler, Lindsay Byrne, is amazing! She took the time to work with me via email to assign interpreters for my pre-op appointment, surgery, and hospital stay. She gave me the names of assigned interpreters and told me I could check them out by consulting my interpreter colleagues in New York City. All assigned interpreters are among the best in the city. Lindsay also asked me for preparation information for the interpreters. That kind of relationship is not found with foreign language interpretation companies.
One way to drive those foreign language interpretation agencies out of the sign language interpreting business is for Deaf consumers to refuse to accept interpreters from them. And sign language interpreters need to stop taking work from them. I know interpreters need to earn money but... there are a lot of work that need to be covered by sign language interpreting agencies.
My interpreter friend in the city sent me a text last night: "Mill Neck is telling interpreters you are a strong client and are expecting quality, so that's why you are now getting the top names. Go Naomi!" Phew. What a fight that was. I did not deserve that. Let's see what happens the next few months with MSKCC interpreter coordinator. I hope I do not have to fight anymore for accessibility at MSKCC. For some reason, I have this feeling I would have to. Ugh.
Tuesday, March 17, 2015
The Type of Cancer That is Operable
The other day, my friend was telling me about her husband's esophageal cancer and how she was heartbroken when the doctor told them that his cancer was inoperable. Some cancers are like that. Some others are operable. Mine is operable. Yet it's not that simple. It takes a lot of emotional courage to move forward with the operation.
When we met with Dr. Jewell last Thursday, we discussed the test results to help us understand the cancer. The cancer is clearly contained in the uterus. And there have been no additional polyps or growth in the endometrium. That is positive. But the uterus is not normal in shape. Another positive thing was that it was not a genetic type. This was just a confirmation of what I already knew. There has been no history of cancer in my family on both sides. This came as a surprise to everyone in my family. Additionally, I have complex hyperplasia with atypia which is the worst type of abnormal thickening in the uterus. Treatment of this type is usually hysterectomy.
Three treatment options were discussed on Thursday. Hysterectomy, radiation, or hormone therapy. I am currently on hormone therapy and I am not responding quite well. I have been feeling really tired, thirsty, having nosebleeds from dry nose, and I just developed a weird rash. If I opt to stay on hormone therapy for life, I run the risk of developing diabetes. Not fun. Radiation is another option but it is hard on the body. Dr. Jewell said she would only consider radiation or hormone therapy instead of hysterectomy if I was not physically capable of handling surgery.
It was clear at that point that surgery is the important step in treating my cancer. It made me sad because it meant I cannot bear a child. I have been processing this for a few weeks to reach acceptance. This cancer took away the chance to have a child. In order to try to be pregnant, I would have to forgo all treatments and run the risk of letting the cancer worsen. If I go with radiation treatments, the radiation would damage my reproductive system. If I go with hormone therapy, I cannot get pregnant because my body stops ovulating.
I am physically capable of handling surgery. Surgery is the best route to take. I do not want to get diabetic nor do I want to be burned with radioactive agents. Yet, surgery terrifies me. Dr. Jewell discussed the surgery in depth with us. She discussed the risks. One risk that made me sick to the stomach... she said that she has seen a few cases in which the uterus was removed only to find it had no traces of cancer. And that the cancer was removed through dilation and curettage. It is possible that my cancer was removed on January 9th when my polyps were removed. We won't know until the uterus goes out. That was one thing that I struggled with the most when I was reviewing the hysterectomy consent paperwork. I still struggle with this fact today. Mike said the other day that this was a decision that is based on what I knew. I know I have cancer. And I have the type of cancer that is operable. It really sucks though. Dr. Jewell said March 30th is the next available day for her to do the surgery. I wanted to wait until end of May so I can plan accordingly. I like to plan things ahead to make sure all my ducks are in row. She said, "Absolutely not. We need to operate as soon as possible." Okay. I guess I will have to make it work. I signed the consent paperwork. Then the nurse came in to discuss preparations with us. There's a lot to be done.
I left the center with a dark cloud looming above my head. When we got to a place to eat for lunch, I burst into tears. It was not an easy decision. Yet it was a life-saving decision. I got my diagnosis a few days before someone got her diagnosis of a different kind of cancer. She died last week. Another woman got her diagnosis a couple of weeks after mine for a different kind of cancer and her prognosis does not look good at this point. I am in a better position or rather operable. Once the uterus is out, they will stage the cancer. If I'm stage 1, I am done. If I'm stage 2-3, I will need adjuvant therapy. Still, I am terrified of the surgery. This whole thing SUCKS!
When we met with Dr. Jewell last Thursday, we discussed the test results to help us understand the cancer. The cancer is clearly contained in the uterus. And there have been no additional polyps or growth in the endometrium. That is positive. But the uterus is not normal in shape. Another positive thing was that it was not a genetic type. This was just a confirmation of what I already knew. There has been no history of cancer in my family on both sides. This came as a surprise to everyone in my family. Additionally, I have complex hyperplasia with atypia which is the worst type of abnormal thickening in the uterus. Treatment of this type is usually hysterectomy.
Three treatment options were discussed on Thursday. Hysterectomy, radiation, or hormone therapy. I am currently on hormone therapy and I am not responding quite well. I have been feeling really tired, thirsty, having nosebleeds from dry nose, and I just developed a weird rash. If I opt to stay on hormone therapy for life, I run the risk of developing diabetes. Not fun. Radiation is another option but it is hard on the body. Dr. Jewell said she would only consider radiation or hormone therapy instead of hysterectomy if I was not physically capable of handling surgery.
It was clear at that point that surgery is the important step in treating my cancer. It made me sad because it meant I cannot bear a child. I have been processing this for a few weeks to reach acceptance. This cancer took away the chance to have a child. In order to try to be pregnant, I would have to forgo all treatments and run the risk of letting the cancer worsen. If I go with radiation treatments, the radiation would damage my reproductive system. If I go with hormone therapy, I cannot get pregnant because my body stops ovulating.
I am physically capable of handling surgery. Surgery is the best route to take. I do not want to get diabetic nor do I want to be burned with radioactive agents. Yet, surgery terrifies me. Dr. Jewell discussed the surgery in depth with us. She discussed the risks. One risk that made me sick to the stomach... she said that she has seen a few cases in which the uterus was removed only to find it had no traces of cancer. And that the cancer was removed through dilation and curettage. It is possible that my cancer was removed on January 9th when my polyps were removed. We won't know until the uterus goes out. That was one thing that I struggled with the most when I was reviewing the hysterectomy consent paperwork. I still struggle with this fact today. Mike said the other day that this was a decision that is based on what I knew. I know I have cancer. And I have the type of cancer that is operable. It really sucks though. Dr. Jewell said March 30th is the next available day for her to do the surgery. I wanted to wait until end of May so I can plan accordingly. I like to plan things ahead to make sure all my ducks are in row. She said, "Absolutely not. We need to operate as soon as possible." Okay. I guess I will have to make it work. I signed the consent paperwork. Then the nurse came in to discuss preparations with us. There's a lot to be done.
I left the center with a dark cloud looming above my head. When we got to a place to eat for lunch, I burst into tears. It was not an easy decision. Yet it was a life-saving decision. I got my diagnosis a few days before someone got her diagnosis of a different kind of cancer. She died last week. Another woman got her diagnosis a couple of weeks after mine for a different kind of cancer and her prognosis does not look good at this point. I am in a better position or rather operable. Once the uterus is out, they will stage the cancer. If I'm stage 1, I am done. If I'm stage 2-3, I will need adjuvant therapy. Still, I am terrified of the surgery. This whole thing SUCKS!
Sunday, March 15, 2015
The Invisibility of Cancer
There is some misconception by some people that I am sickly right now. In fact, some individuals feel uncomfortable to see me because of that. I realized that the word cancer triggers images of those who are nearing their end after being beaten up by radiation and chemotherapy treatments.
It made me realize that cancer is like being Deaf. Deafness is often described as an invisible disability. You do not realize a person is Deaf walking by you until you talk to them. Then the person would speak with a Deaf accent or somehow let you know he's Deaf. Cancer is like that. You may have passed so many people who have cancer living in their bodies and not realize it. You may be able to figure it out when you see bald heads or skin burns from treatments to conclude the person has cancer.
My cancer is hidden in here and a stranger would not have guessed that I have cancer.
This is what I look like today- au naturel.
Do I need to look perfect or all made up to be considered not sickly?
As for those people who are obviously beaten up from treatments, they may look sickly but they need love and support from everyone. Don't avoid them because of what they may look like. Look beyond their appearances and get in touch with their souls. That's the beautiful part.
It made me realize that cancer is like being Deaf. Deafness is often described as an invisible disability. You do not realize a person is Deaf walking by you until you talk to them. Then the person would speak with a Deaf accent or somehow let you know he's Deaf. Cancer is like that. You may have passed so many people who have cancer living in their bodies and not realize it. You may be able to figure it out when you see bald heads or skin burns from treatments to conclude the person has cancer.
My cancer is hidden in here and a stranger would not have guessed that I have cancer.
This is what I look like today- au naturel.
Do I need to look perfect or all made up to be considered not sickly?
As for those people who are obviously beaten up from treatments, they may look sickly but they need love and support from everyone. Don't avoid them because of what they may look like. Look beyond their appearances and get in touch with their souls. That's the beautiful part.
Saturday, March 14, 2015
Why New York City!!?!!
We went back to New York City on Wednesday night for the pelvic ultrasound and follow-up meeting with Dr. Jewell on Thursday. The commute is exhausting. The train is much faster and more expensive than the bus (about 2 hours 50 minutes each way). We took the Megabus because it's cheaper. BUT we were not comfortable. The seats were awful. It was a long 4.5-hour+ trip each way. Plug outlets did not work. Wi-Fi did not work. But the trip is worthwhile because I have a wonderful oncologist. The bus ride made us realize that the Megabus is not an option for post-op appointments since I will be in pain. Comfort is very important at that time. So we'll be doing Amtrak for both post-op appointments. My credit card company is really happy right now. Like I said in an earlier post, cancer is expensive.
Why New York City? I have some friends who think that going up to New York City is not necessary and that I should go with a local oncologist. People are entitled to their own opinions. Nevertheless, I need to feel supported in my decision. It sucks to know that I don't have that support from specific friends when they comment about how I should have the surgery locally and that the commute is a pain. We know the commute sucks and time-consuming but it's all worthwhile for the right doctor and the care. Memorial Sloan-Kettering Cancer Center (MSKCC) was described in one of my readings online as: "one of the most prestigious and advanced cancer research institutions in the entire world."
Back in 2002, I had a bad case of plantar fasciitis that I was not able to walk well. My podiatrist said that we have reached the last resort - surgery. Because that was what the insurance in United States would pay for. Having the surgery would mean decreased mobility. That was not acceptable for me because I am active. I asked him if there were other options. He said to me, "This is off the record but go to Canada. They have this non-invasive treatment that really works." Before that time, I used to wonder why people would travel great distances for medical treatments. After this experience, I understood and supported traveling for optimal medical treatments. I got my treatment in Canada and I am happy to say I can walk and work out without any pain or limping. It was the best decision I made. I knew after that experience that if I had to travel again for optimal medical care, I would.
We are part of a Facebook group for women with endometrial cancer. I think Mike's the only male member that makes occasional comments! Go, Mike! :-) A woman is moving from United Kingdom to Manhattan in a few weeks. She noticed that I am getting care in NYC so she asked for a recommendation. I recommended Dr. Jewell. Mike made a follow-up comment. I am copying and pasting his comment which was a great description of Dr. Jewell: "Dr. Jewell is kind, considerate, caring, extremely DETAILED and BRUTALLY HONEST. Easily the best decision that Naomi and I ever made during this process. We have walked out of her offices feeling more informed each time."
In my ongoing research about endometrial cancer, I came across information about how uterine/ endometrial cancer treatment is most deficient in many parts of United States. The reason for this is probably due to lack of training of gynecologists to detect this type of cancer and lack of research and funding for uterine cancer. MSKCC in 2013 published a groundbreaking study that from molecular standpoint, breast, ovarian and uterine cancers are all identical. After this study, MSKCC went on record that same level of testing, treatment, and surveillance used for breast and ovarian cancers be used for uterine cancers.
I remember reading on MD Anderson Cancer Center's website that they routinely tests women with uterine cancers for CA-125 (tumor markers of ovarian cancer). Dr. Diaz-Montes did not include this test. I had to ASK for it. I learn from one of my support groups that they had to fight for this CHEAP blood test. Dr. Jewell said that it was a good thing I got that test. Dr. Diaz-Montes just wanted to jump to surgery and do no tests. I insisted on tests. She willingly did the hormone receptor test and the CT scan. I asked for CA-125 test. Dr. Jewell was not content with the information in my records. She wanted to see the pathology slides and the CD images herself. Plus, she wanted to do genetics test and pelvic ultrasound to get the full picture about my cancer.
When Dr. Jewell was talking with us last Thursday, she noticed I was feeling emotional about the whole thing, she ASKED about that. I explained my feelings. She took the time to listen and try to connect with me by comforting me. She sat with us for over an hour to discuss treatment options, plan of action, preparing for possible adjuvant therapy, follow-up care, and any questions we had. She shared the latest research on lymph nodes and cancer. This means the center uses an innovative way to detect cancer in lymph nodes and determine the ones to remove during surgery rather than removing them all at once. She described how follow-up care once I am deemed cancer-free would involve tests that are not recommended by American Board of Obstetricians-Gynecologists. She said that the center noticed that cancer do come back in some cases which makes those tests necessary as preventive care for life. I left the appointment last Thursday knowing I trusted Dr. Jewell with my life. I could not trust Dr. Diaz-Montes to do anything to me while I am under anesthesia. Mike commented to me yesterday that he always felt Dr. Diaz-Montes was in a hurry to go which left us swimming in darkness and uncertainty with numerous unanswered questions. I do not feel that way with Dr. Jewell. She explains everything in great detail.
Trust is key. A relationship with your oncologist is key. If it means traveling far away, so be it. Look for a doctor with exemplary bedside manners. Dr. Jewell is repeatedly recognized for her bedside manners. Dr. Jewell was my third opinion. I often like to say, "The third time is a lucky charm." Dr. Jewell is my lucky charm.
Why New York City? I have some friends who think that going up to New York City is not necessary and that I should go with a local oncologist. People are entitled to their own opinions. Nevertheless, I need to feel supported in my decision. It sucks to know that I don't have that support from specific friends when they comment about how I should have the surgery locally and that the commute is a pain. We know the commute sucks and time-consuming but it's all worthwhile for the right doctor and the care. Memorial Sloan-Kettering Cancer Center (MSKCC) was described in one of my readings online as: "one of the most prestigious and advanced cancer research institutions in the entire world."
Back in 2002, I had a bad case of plantar fasciitis that I was not able to walk well. My podiatrist said that we have reached the last resort - surgery. Because that was what the insurance in United States would pay for. Having the surgery would mean decreased mobility. That was not acceptable for me because I am active. I asked him if there were other options. He said to me, "This is off the record but go to Canada. They have this non-invasive treatment that really works." Before that time, I used to wonder why people would travel great distances for medical treatments. After this experience, I understood and supported traveling for optimal medical treatments. I got my treatment in Canada and I am happy to say I can walk and work out without any pain or limping. It was the best decision I made. I knew after that experience that if I had to travel again for optimal medical care, I would.
We are part of a Facebook group for women with endometrial cancer. I think Mike's the only male member that makes occasional comments! Go, Mike! :-) A woman is moving from United Kingdom to Manhattan in a few weeks. She noticed that I am getting care in NYC so she asked for a recommendation. I recommended Dr. Jewell. Mike made a follow-up comment. I am copying and pasting his comment which was a great description of Dr. Jewell: "Dr. Jewell is kind, considerate, caring, extremely DETAILED and BRUTALLY HONEST. Easily the best decision that Naomi and I ever made during this process. We have walked out of her offices feeling more informed each time."
In my ongoing research about endometrial cancer, I came across information about how uterine/ endometrial cancer treatment is most deficient in many parts of United States. The reason for this is probably due to lack of training of gynecologists to detect this type of cancer and lack of research and funding for uterine cancer. MSKCC in 2013 published a groundbreaking study that from molecular standpoint, breast, ovarian and uterine cancers are all identical. After this study, MSKCC went on record that same level of testing, treatment, and surveillance used for breast and ovarian cancers be used for uterine cancers.
I remember reading on MD Anderson Cancer Center's website that they routinely tests women with uterine cancers for CA-125 (tumor markers of ovarian cancer). Dr. Diaz-Montes did not include this test. I had to ASK for it. I learn from one of my support groups that they had to fight for this CHEAP blood test. Dr. Jewell said that it was a good thing I got that test. Dr. Diaz-Montes just wanted to jump to surgery and do no tests. I insisted on tests. She willingly did the hormone receptor test and the CT scan. I asked for CA-125 test. Dr. Jewell was not content with the information in my records. She wanted to see the pathology slides and the CD images herself. Plus, she wanted to do genetics test and pelvic ultrasound to get the full picture about my cancer.
When Dr. Jewell was talking with us last Thursday, she noticed I was feeling emotional about the whole thing, she ASKED about that. I explained my feelings. She took the time to listen and try to connect with me by comforting me. She sat with us for over an hour to discuss treatment options, plan of action, preparing for possible adjuvant therapy, follow-up care, and any questions we had. She shared the latest research on lymph nodes and cancer. This means the center uses an innovative way to detect cancer in lymph nodes and determine the ones to remove during surgery rather than removing them all at once. She described how follow-up care once I am deemed cancer-free would involve tests that are not recommended by American Board of Obstetricians-Gynecologists. She said that the center noticed that cancer do come back in some cases which makes those tests necessary as preventive care for life. I left the appointment last Thursday knowing I trusted Dr. Jewell with my life. I could not trust Dr. Diaz-Montes to do anything to me while I am under anesthesia. Mike commented to me yesterday that he always felt Dr. Diaz-Montes was in a hurry to go which left us swimming in darkness and uncertainty with numerous unanswered questions. I do not feel that way with Dr. Jewell. She explains everything in great detail.
Trust is key. A relationship with your oncologist is key. If it means traveling far away, so be it. Look for a doctor with exemplary bedside manners. Dr. Jewell is repeatedly recognized for her bedside manners. Dr. Jewell was my third opinion. I often like to say, "The third time is a lucky charm." Dr. Jewell is my lucky charm.
Monday, March 9, 2015
Preparing Sign Language Interpreters
Yesterday, I role-played as a Deaf patient in a specific medical situation with a doctor and an interpreter. This was part of a Medical Interpreting Immersion program offered by the CATIE (https://www2.stkate.edu/catie-center/medical-interpreting-immersion). I got assigned to do breast cancer. Ugh. I really wanted to do something else... I just wanted to get AWAY from cancer for a bit- give me diabetes, colonoscopy, or acid reflux. The universe works in funny ways. It turned out to be an educational experience for all. I worked with five different groups. Five different mock doctors and five different mock interpreters. After roleplaying for about 15 minutes, we had 15 minutes to share feedback.
I realized from this experience that finding an oncologist is just like finding a friend you are comfortable with. There's that instantaneous connection. There are doctors who take the time to explain everything. There are doctors who just don't. We choose who we want to work with. I felt connected with some mock doctors but not so with others. This experience validated my feelings about why I couldn't fully connect with Dr. Diaz-Montes. She's more clinical and wants to get rid of the cancer without looking me as a whole person. Dr. Jewell does. I have had to drag things out of Dr. Diaz-Montes. I thrive on information. I thrive on knowing what's going on in my body. I WANT to understand this cancer and how I am going to fight this. I loved mock doctors who explained in details about the breast cancer and treatment options. Some patients may not want the level of detail I desire.
As a mock Deaf patient, I found myself remembering my raw emotions at the initial oncologist appointments. I reenacted those. For some reason, it was like taking a step outside myself and seeing what I was feeling before. I asked reactive questions that revealed my fear and uncertainty. I talked about the importance of feeling like a woman when I learn that I may need to lose one breast. A male doctor said, "I understand." I reacted, "You don't understand! You're a man!" After the mock situation was over, he walked out upset. I learned from a participant that his wife died of breast cancer. I remember thinking and wondering why he, as a mock doctor, knew so much about breast cancer and treatment. Cancer is real. It happens to too many people. Too many, IMHO.
I also found myself asking the harder questions which was telling of my ongoing research about cancer and treatment. I asked about whether I would need external or internal radiation for my breast cancer. I found some interpreters did not understand this question. I also learn that some did not know that there were different types of chemotherapy- intravenously, via port, or orally. I encouraged them to research more so they are better prepared for oncology appointments. One mock interpreter said she wanted to hug me but was not certain. I said that interpreters who show empathy are the ones I respect. Hugs are not expected as oncologists typically take the lead on the 'bedside manner'. I have had oncologists hug me and it is a soothing feeling. It is for me. It may not work for other patients.
One group asked about using the sign for treatment. She did not want to use the signed English version (see video below):
The mock interpreter picked this sign (see video below):
Thank you, CATIE, for this experience. The universe knew the interpreters and I needed it.
I realized from this experience that finding an oncologist is just like finding a friend you are comfortable with. There's that instantaneous connection. There are doctors who take the time to explain everything. There are doctors who just don't. We choose who we want to work with. I felt connected with some mock doctors but not so with others. This experience validated my feelings about why I couldn't fully connect with Dr. Diaz-Montes. She's more clinical and wants to get rid of the cancer without looking me as a whole person. Dr. Jewell does. I have had to drag things out of Dr. Diaz-Montes. I thrive on information. I thrive on knowing what's going on in my body. I WANT to understand this cancer and how I am going to fight this. I loved mock doctors who explained in details about the breast cancer and treatment options. Some patients may not want the level of detail I desire.
As a mock Deaf patient, I found myself remembering my raw emotions at the initial oncologist appointments. I reenacted those. For some reason, it was like taking a step outside myself and seeing what I was feeling before. I asked reactive questions that revealed my fear and uncertainty. I talked about the importance of feeling like a woman when I learn that I may need to lose one breast. A male doctor said, "I understand." I reacted, "You don't understand! You're a man!" After the mock situation was over, he walked out upset. I learned from a participant that his wife died of breast cancer. I remember thinking and wondering why he, as a mock doctor, knew so much about breast cancer and treatment. Cancer is real. It happens to too many people. Too many, IMHO.
I also found myself asking the harder questions which was telling of my ongoing research about cancer and treatment. I asked about whether I would need external or internal radiation for my breast cancer. I found some interpreters did not understand this question. I also learn that some did not know that there were different types of chemotherapy- intravenously, via port, or orally. I encouraged them to research more so they are better prepared for oncology appointments. One mock interpreter said she wanted to hug me but was not certain. I said that interpreters who show empathy are the ones I respect. Hugs are not expected as oncologists typically take the lead on the 'bedside manner'. I have had oncologists hug me and it is a soothing feeling. It is for me. It may not work for other patients.
One group asked about using the sign for treatment. She did not want to use the signed English version (see video below):
The mock interpreter picked this sign (see video below):
I said that two months ago, I would have been totally fine with this sign. BUT now that I have cancer for real, I struggle with this sign (refer to this post: http://naomicancerjourney.blogspot.com/2015/03/cured-or-not.html).
I suggested the alternative sign for treatment (see video below) because in reality, cancer patients ultimately decide what treatment option(s) they want to do.
Thank you, CATIE, for this experience. The universe knew the interpreters and I needed it.
Sunday, March 8, 2015
Eff Cancer!
Last week was the lovely Eff Cancer party. Mike and I did not know what to expect. We wanted it to be a way to get positive support from my friends to help me get through this battle against cancer.... but we also wanted to educate others. I was in Salt Lake City this past week for a training and met some people who looked at me blankly, "What's endometrial cancer?" I met a woman who has optic nerve cancer. I have never heard of this particular cancer but it was like I met someone who knew the emotional ups and downs that came with having cancer. Cancer can exist in any part of the body. I have been meeting people sharing their own stories or the stories of their loved ones. It has been humbling to hear those stories.
Our wonderful friends who stayed with us overnight took it upon themselves to decorate the place for the party. Mike set the lights to be peach-colored. The whole place looked peachy! I wanted to put up some facts about endometrial cancer and treatments just to educate people. Mike and I love games. The day before, my friends from San Diego surprised me at a brunch- I did not know they were coming. We were talking about games. What can we play? I was the one to come up with the idea of "Pin the Donkey" game and have people pin where my cancer is. I was laughing about it. They figured that if I would not be offended then it would be a good thing to laugh about it. The first few days Mike and I started to joke about cancer a bit. It can be therapeutic to laugh about our own misfortunes. The "Pin the Uterus" game idea was one of those "laughter is the best medicine," moments.
The party was an impromptu. Mike decided to do a talk and did a Q/A session. It was a nice discussion. I was grateful to those who came from San Diego, Florida, Ohio and New York. The locals also braved the ice storm to make the party. Here's the video link of the party: https://youtu.be/F6bkLBwlbTo
We will continue to educate others and invite any support we can get. :-)
Our wonderful friends who stayed with us overnight took it upon themselves to decorate the place for the party. Mike set the lights to be peach-colored. The whole place looked peachy! I wanted to put up some facts about endometrial cancer and treatments just to educate people. Mike and I love games. The day before, my friends from San Diego surprised me at a brunch- I did not know they were coming. We were talking about games. What can we play? I was the one to come up with the idea of "Pin the Donkey" game and have people pin where my cancer is. I was laughing about it. They figured that if I would not be offended then it would be a good thing to laugh about it. The first few days Mike and I started to joke about cancer a bit. It can be therapeutic to laugh about our own misfortunes. The "Pin the Uterus" game idea was one of those "laughter is the best medicine," moments.
The party was an impromptu. Mike decided to do a talk and did a Q/A session. It was a nice discussion. I was grateful to those who came from San Diego, Florida, Ohio and New York. The locals also braved the ice storm to make the party. Here's the video link of the party: https://youtu.be/F6bkLBwlbTo
We will continue to educate others and invite any support we can get. :-)
Tuesday, March 3, 2015
Cured or Not?
People do say the darnedest things. Sometime it's nice. Sometime it's okay. Sometime it's NOT okay. Only they don't know it.
Two lines that seem to get to me the most which leads me to this 'philosophical' post. Some people have been saying something like, "this cancer seems to be curable" or "you'll make a full recovery." Am I overthinking things? Maybe. But those lines seem to get to me the most.
Let's start with the dictionary...
Cure: "something (such as a drug or medical treatment) that stops a disease and makes someone healthy again", "something that ends a problem or improves a bad situation," and "the act of making someone healthy again after an illness." (Source: http://www.merriam-webster.com/dictionary/cure).
Naomi's note: healthy again. If I have a bad cold, I would take Nyquil and my cold goes away. Therefore I am cured. I still get to keep my nasal cavity.
Two lines that seem to get to me the most which leads me to this 'philosophical' post. Some people have been saying something like, "this cancer seems to be curable" or "you'll make a full recovery." Am I overthinking things? Maybe. But those lines seem to get to me the most.
Let's start with the dictionary...
Cure: "something (such as a drug or medical treatment) that stops a disease and makes someone healthy again", "something that ends a problem or improves a bad situation," and "the act of making someone healthy again after an illness." (Source: http://www.merriam-webster.com/dictionary/cure).
Naomi's note: healthy again. If I have a bad cold, I would take Nyquil and my cold goes away. Therefore I am cured. I still get to keep my nasal cavity.
Recovery: "the act or process of becoming healthy after an illness or injury : the act or process of recovering" and "the act or process of returning to a normal state after a period of difficulty" (Source: http://www.merriam-webster.com/dictionary/recovery)
Naomi's note: I believe that normal state is having all body parts intact.
The way I see it... having cancer does not mean one will be fully cured or recovered. Let's go with simpler terms.
If the brake pads in my car goes out, I need new brake pads. Good as a whole again. Unfortunately, medicine has not gotten to the point that humans can be treated as cars when it comes to cancer treatments. I cannot get a new reproductive system and be 'whole again' or restored to a 'normal state'. What cancer treatments basically do is, "Go away, cancer! We hope you don't come back again." Those treatments come with a significant expense of the person's whole well-being. A breast cancer survivor was telling me yesterday about how the radiation treatments may have impacted her implants. An endometrial cancer survivor was telling me about how she has to use a vagina dilator for the rest of her life because her cancer was stage 4 and she had surgery and painful radiation/ brachytherapy treatments that impacted her vagina's structure.
Google is a tricky thing. When I told some people the news, many of them said they Googled endometrial cancer and were feeling relieved that it is curable. Ugh. Yes endometrial cancer is easily removed through surgery. Is it a cure? No, I do not think so. It may make the cancer go away. I have met women online who have had to suffer with the aftermaths of having the full hysterectomy with ovaries removed. Are they cured? No. The cancer just went away. The treatment gave them something else to deal with- the surgical menopause and life without ovaries. Another friend told me last week she met a woman who survived uterine cancer years ago and was fearing that the cancer was coming back.
I do not see cancer treatments as the cure. I do not see cancer treatments as a way to make a person fully recover. I see cancer treatments as a way to make the cancer stop haunting the person's body for a certain period of time, whether it is for life or a few years. Once the treatments are over, the cancer survivors adapt to their new lives. We have to adapt to the aftermath of the cancer treatments. I will be monitored for the rest of my life for cancer to make sure it does not come back. If it does, more treatments will be needed. It's like cancer has become a new part of my identity. It is true for many cancer survivors.
Therefore, pretty please stop saying that I will be cured or fully recovered because I won't. Instead, I will adapt and survive.
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