Despite the awkwardness because of the interpreting situation, Dr. Jewell showed me what a first appointment with an oncologist should be like. She spent an hour with me which was much more time than the oncologists for my first and second opinion appointments.
First, she sat down very close to me. She apologized about the center's failure to provide an effective interpreter and hoped it did not taint the beginning of a positive relationship we are going to have. She then said she got my health history but wanted to know about me. What do I do for a living... what general health history I have and what led me to meeting her. She took detailed notes on her clipboard. I looked over and there were a LOT of details in her notes and all handwritten. She asked me questions and I answered.
She explained what endometrial cancer is and how it behaves. She said it's a slow moving cancer. Based on all the information she has seen so far, my cancer was caught very early. She wrote down on a blank paper and drew to describe grade 1.
I told her I didn't have my period anymore. She said that it's the megestrol and I probably won't get period again while taking the medication. She explained why. The megestrol gives my body the progesterone that it needs. As a result, no period.
She said that she wanted to examine me. I was shocked by how thorough she was when she was examining me. She took her time to feel everything and asked me if this hurts, that hurts. I had no pain. Dr. Diaz-Montes did not examine me like that. The doctor issuing the second opinion did not even examine me at all.
Dr. Jewell told me to get dressed and that we would talk more. They typically move patients to a different room to talk. But they decided to stay in the examination room because we had the FaceTime set up already.
After the examination, Dr. Jewell asked me what I wanted to do. Did I want to be pregnant? I told her that I wanted to weight all my options before I decide. She said I could be pregnant. The catch: I would need to stop taking megestrol when I am ready to try. I have to have a dilation and curettage to make sure the cancer is not in the uterus before we try. I asked about whether pregnancy hormones would accelerate the growth of cancer. She said, "Not this cancer. When you are pregnant, your progesterone levels are high. High progesterone levels are good and prevents this cancer from coming back." She said that I could take megesterol for as long as I want to and I could try for as long as I want to. The catch, I have to be OFF megesterol when trying to get pregnant. She said that route is not recommended. I asked her when would be a good time to try thinking of Dr. Diaz-Montes saying I could try in May. She said frankly, "Yesterday." Mike asked about fertility specialists. She said that fertility specialists would not work. She said two options are ideal: surrogacy or adoption. I needed to hear that frankness but it does make me sad.
She said that when I am ready, surgery is the best route. She recommends removing the cervix, uterus, the fallopian tubes, and the pelvic lymph nodes. However she said that because I caught it early enough, I should keep my ovaries. The benefits of keeping my ovaries outweigh the risks of not keeping my ovaries. However if I choose to get pregnant, we would have to re-evaluate whether keeping my ovaries is a viable option. That gave me a sense of relief. And this was the first time I felt a glimmer of hope since I found out I had cancer. The way I see it... having the cancer shortened my life unless I did something about it. But if I did something like going with Dr. Diaz-Montes for the full removal of everything, my life would still be shortened. Losing ovaries means I am at a MUCH higher risk of heart disease and osteoporosis AND breast cancer. Basically I'm screwed if I lose my ovaries. I am tired of many people thinking ovaries are just egg stores. I have been encountered with the attitude... what's the big deal? Close down those egg stores. Not so. Women depend on the hormones that ovaries offer. Why do you think you have never heard of men getting their balls cut off? The support groups I am part of-- other women really encouraged me to see if I can fight to keep my ovaries. Some women reported that their oncologists rushed them into surgery without giving them the time to research and learn the negative consequences of losing the ovaries. I have been criticized for not being willing to be rushed into the surgery as if I was not willing to do anything about this cancer. I am WILLING but I want to be well-informed and make the best decision that ensures the quality of my life.
BUT before I decide which route to take, she said she needed to do two more tests. My chart was incomplete and left open for questions. Dr. Diaz-Montes did not want to do many tests. She just wanted to cut my reproductive system out of me. I asked for the tests. I had to fight to be tested for ovarian cancer too. And I tested negative. I didn't know there were more tests to be done. Mike and I were impressed with Dr. Jewell. She said that she may need to do a dilation and curettage because she wants to LOOK at the uterus to see how the cancer is behaving. When she said that, Mike knew she was the right doctor.
I asked her about the surgery. She drew a picture of how the surgery would be done. This was very helpful to me. She discussed briefly about the surgery and what I need to know about what to do after. She did not want to go into details yet because we need to do more tests before she can make a final recommendation. But she willingly answered my questions about risks of the surgery with statistics for each type of risk. She told me about two of her patients who kept their ovaries coming back with ovarian cancer. She said it does happen and it is unexplainable but it was just two patients out of numerous she has seen over the years. I asked if she had to remove my ovaries, would I get hormone replacement therapy. She said, "Definitely yes until you are 50." Dr. Diaz-Montes did not want me to get hormone replacement therapy. Surgical menopause is no easy feat.
The final recommendation will be made when we go back up in two weeks after two more tests are done.
New York City is not a place that I visit often. In fact, I detest crowds. New York City feels too busy for my own taste. I purposefully avoid New York City as much as I can. I have been only there three times before the appointment. The first time, I went to the Macy's Thanksgiving Parade in 1997. I remember thinking that day as I fought the crowds, "I DO NOT LIKE NEW YORK CITY!" I came back in 2002 because New York City was the only place I could take a test that was required in California. I was living in Rochester at that time. It was a quick visit. Third time was with my dear friend, Dan who wanted to fly from Rochester to New York City for the day.
On Thursday I realized that in order for me to have the most optimal cancer treatment, I would have to embrace New York City. Okay, here goes. I will be going there the next few months to get treated. Dr. Jewell is the right oncologist for me. She was the first oncologist that took me out of the darkness and uncertainty that I was swimming through. She was sensitive to the distance we were traveling and asked if we wanted to go to Johns Hopkins. We explained that it's not an option for us. Dr. Diaz-Montes has too much influence in that area. Traveling back and forth to New York City comes with expenses and that makes me nervous about finances. But if it means saving my ovaries and preserving the quality of my life, it is worth the trip. Onward.
Saturday, February 28, 2015
Friday, February 27, 2015
Video remote interpreting has no place in medical settings
Video remote interpreting (VRI) has no place in medical appointments especially sensitive appointments, period. I was upset that the first time I was meeting the oncologist in New York City I ended up not having an interpreter again! I was thinking yesterday, "Jeez. I don't recommend that deaf people get cancer because access seems to be a big issue!" Cancer happens to anyone. Oh well. What happened- the system failed me again. Twice in Annapolis and now in New York City. That must change.
My friend called the center's interpreter coordination office on Monday to find out if we had a live interpreter confirmed. The woman he spoke with refused to give us any information about who and which agency citing HIPAA as the reason. This did not make sense at all. But said we had to ask the doctors office to get that information. We couldn't get this information.
At first, the appointment was frustrating for me. They did not have a sign language interpreter!!!!! ACK. When we arrived, they told my friend they were going with a VRI. My friend told them it was NOT an option. They then said they found someone who was on the way. Our appointment was delayed for an hour. Then we were called in. A Spanish staff interpreter gave my friend her business card and she was fiddling with a laptop to get VRI to work. My friend believes that they erroneously sent a Spanish interpreter and at the last minute realized what they were supposed to send was a sign language interpreter.
The Spanish interpreter and a man were inside the exam room with the VRI machine (MAARTI) which was the same company as the one that crashed at my first oncology appointment in Annapolis. The nurse was trying to get me settled in and changed but I wasn't comfortable. My friend was getting frustrated asking where the live interpreter we were promised was. The Spanish staff interpreter kept on saying she was still trying to locate one and that VRI would have to do. Right in front of our eyes, the VRI machine crashed several times. A connection with an interpreter would happen then the video connection freezes. We knew that it was not going to work.
In my experience using VRI for some work meetings, I think VRI is okay for some specific situations if the need arises but NOT in medical settings. In order to ensure a smooth video connection , connection via Ethernet is key, not WiFi because in medical centers there are competition over bandwidth. Audio interpretation works fine on WiFi. Spoken language interpretations may work well but not sign language interpretations. The machine was on WiFi and connections kept on dropping.
The nurse really wanted to get started. The Spanish interpreter and the guy kept on trying. My friend asked them to leave the room as they were making things worse by insisting to make the VRI machine work when it was an obvious failure. They wouldn't leave. I started crying. My friend was getting angry and told them to leave. The Spanish interpreter wouldn't leave. My friend asked the nurse to tell them to leave because they were making it worse. The nurse closed the door on her and got me settled in. I changed clothes. My friend asked a friend to help. Their friend agreed to call us on FaceTime on my iPad and interpret for free. The FaceTime connection was much better than the MAARTI machine but even so, there were some delays in the video feed. What worked out well was having my friend voice my questions and comments while their friend signed for the doctor. It was at least some kind of communication access.
While the doctor was getting my history she asked me what I do for a living. I said I'm an administrator of an interpreting agency and they all laughed. The irony of it all... I cannot get an interpreter even though I work for a company that provides interpreters.
The Spanish staff interpreter brought her boss over to the clinic to catch us after the appointment. I was too overwhelmed and didn't want to deal with them. My friend was angry and told them to leave us alone. I went to sit to wait for the nurse to bring out paperwork for me to complete before I can be checked out.
My friend decided to go down to see if he could catch the interpreter coordinator. He did. They had a talk. The coordinator was very nervous because they knew they messed up. My friend told him what it felt to be without access and on top of it all it's cancer! The coordinator started crying and feeling horrible. He wrote a note to me for my friend to pass along. But my friend told him to give it to me himself. They came back up to the clinic. The coordinator was nervous and gave me a note. It was an apology note and they said they already confirmed an interpreter for my next visit in two weeks. I thanked him but firmly told him he had to work with me in ensuring effective accommodations going forward. Dr. Jewell and her nurse, Rashidad were very sympathetic to our cause and promised to fight for a live interpreter going forward as well.
Cancer is a battle in itself. We have had to fight for access. We need to fight for other deaf people. The fact VRI is not reliable makes it an unfit solution for sensitive medical appointments.
My friend called the center's interpreter coordination office on Monday to find out if we had a live interpreter confirmed. The woman he spoke with refused to give us any information about who and which agency citing HIPAA as the reason. This did not make sense at all. But said we had to ask the doctors office to get that information. We couldn't get this information.
At first, the appointment was frustrating for me. They did not have a sign language interpreter!!!!! ACK. When we arrived, they told my friend they were going with a VRI. My friend told them it was NOT an option. They then said they found someone who was on the way. Our appointment was delayed for an hour. Then we were called in. A Spanish staff interpreter gave my friend her business card and she was fiddling with a laptop to get VRI to work. My friend believes that they erroneously sent a Spanish interpreter and at the last minute realized what they were supposed to send was a sign language interpreter.
The Spanish interpreter and a man were inside the exam room with the VRI machine (MAARTI) which was the same company as the one that crashed at my first oncology appointment in Annapolis. The nurse was trying to get me settled in and changed but I wasn't comfortable. My friend was getting frustrated asking where the live interpreter we were promised was. The Spanish staff interpreter kept on saying she was still trying to locate one and that VRI would have to do. Right in front of our eyes, the VRI machine crashed several times. A connection with an interpreter would happen then the video connection freezes. We knew that it was not going to work.
The nurse really wanted to get started. The Spanish interpreter and the guy kept on trying. My friend asked them to leave the room as they were making things worse by insisting to make the VRI machine work when it was an obvious failure. They wouldn't leave. I started crying. My friend was getting angry and told them to leave. The Spanish interpreter wouldn't leave. My friend asked the nurse to tell them to leave because they were making it worse. The nurse closed the door on her and got me settled in. I changed clothes. My friend asked a friend to help. Their friend agreed to call us on FaceTime on my iPad and interpret for free. The FaceTime connection was much better than the MAARTI machine but even so, there were some delays in the video feed. What worked out well was having my friend voice my questions and comments while their friend signed for the doctor. It was at least some kind of communication access.
While the doctor was getting my history she asked me what I do for a living. I said I'm an administrator of an interpreting agency and they all laughed. The irony of it all... I cannot get an interpreter even though I work for a company that provides interpreters.
The Spanish staff interpreter brought her boss over to the clinic to catch us after the appointment. I was too overwhelmed and didn't want to deal with them. My friend was angry and told them to leave us alone. I went to sit to wait for the nurse to bring out paperwork for me to complete before I can be checked out.
My friend decided to go down to see if he could catch the interpreter coordinator. He did. They had a talk. The coordinator was very nervous because they knew they messed up. My friend told him what it felt to be without access and on top of it all it's cancer! The coordinator started crying and feeling horrible. He wrote a note to me for my friend to pass along. But my friend told him to give it to me himself. They came back up to the clinic. The coordinator was nervous and gave me a note. It was an apology note and they said they already confirmed an interpreter for my next visit in two weeks. I thanked him but firmly told him he had to work with me in ensuring effective accommodations going forward. Dr. Jewell and her nurse, Rashidad were very sympathetic to our cause and promised to fight for a live interpreter going forward as well.
Cancer is a battle in itself. We have had to fight for access. We need to fight for other deaf people. The fact VRI is not reliable makes it an unfit solution for sensitive medical appointments.
Wednesday, February 25, 2015
Holding my Cancer Cells
The MSKCC seems to be a well-oiled operation. They did a great job in preparing me for the appointment tomorrow by sending me information about what I can expect. I had NO clue what to expect from my first appointment with Dr. Diaz-Montes.
Here goes....
What is Cancer?
I saw a disturbing story circulating on Facebook today about how a politician/ owner of a home health care business thought cancer was fungus.
http://www.msnbc.com/rachel-maddow-show/gop-lawmaker-sees-cancer-fungus?cid=sm_fb_maddow
Sigh. If it was even that, I would gladly take anti-fungal medication to make the cancer go away. It really concerns me that even politicians are so ignorant about this disease that is impacting more and more people in this world.
Mike's 13-year-old son recently visited us. Mike and I decided to be upfront with him about my cancer so he knows what to expect. We asked him what he knows about cancer. He said he learned in school that it's a growth of abnormal cells. We were impressed. Next, we talked about endometrial cancer and where it originates.
A 13-year-old boy knows more about cancer than this woman, Michelle Fiore. What is this world coming to?
http://www.msnbc.com/rachel-maddow-show/gop-lawmaker-sees-cancer-fungus?cid=sm_fb_maddow
Sigh. If it was even that, I would gladly take anti-fungal medication to make the cancer go away. It really concerns me that even politicians are so ignorant about this disease that is impacting more and more people in this world.
Mike's 13-year-old son recently visited us. Mike and I decided to be upfront with him about my cancer so he knows what to expect. We asked him what he knows about cancer. He said he learned in school that it's a growth of abnormal cells. We were impressed. Next, we talked about endometrial cancer and where it originates.
A 13-year-old boy knows more about cancer than this woman, Michelle Fiore. What is this world coming to?
Sunday, February 22, 2015
The Peach Campaign: The Need to Raise Awareness about Uterine Cancers
It was my friend, Trina, who taught me that peach color is used to represent uterine cancers. She has been wearing a peach ribbon in my honor whenever she runs in half-marathons since learning of my diagnosis.
When I found out I had endometrial cancer, I realized I did not know much about this type of cancer. I knew much more about breast cancer largely because the pink campaign is so strong. It has raised awareness about breast cancer. I knew of other cancers like melanoma, bone marrow, brain and esophageal because I knew people who survived those cancers. Endometrial cancer was a new territory for me.
There was a documentary made about gynecologic cancers: https://vimeo.com/ondemand/nedthemovie/ in hopes to raise awareness about 'below the belt' cancers which include endometrial cancer. I have not seen the film yet but some of the women in the online support group that I am part of shared some tidbits.
1. Equal number of women die from gynecologic cancer as men die from prostate cancer. However, gynecologic cancers receive less than 50% of the funding than prostate cancer does.
2. At a large conference of gynecologists, a gynecologic oncologist asked how many of them heard of the pink campaign. ALL of them did. Many of them donated to the pink campaign causes. Very few in the audience knew about the Foundation for Women's Cancer and none of them have donated to the funding for gynecologic cancer research. Sadly, those are the doctors that women depend on to monitor for early detection of gynecologic cancers.
It certainly helped me understand why Dr. Busch thought my period changes were just normal. Dr. Busch probably did not know anything about identifying warning signs of gynecologic cancers.
I learned about the Foundation of Women's Cancer through my support group (http://www.foundationforwomenscancer.org/) and have found their website to be full of great resources. Here's some information for you all to review: http://www.foundationforwomenscancer.org/wp-content/uploads/Facts-about-Gynecologic-Cancers.pdf.
Today Mike and I were shopping today looking for peach-colored ribbons, balloons, and paper. We went to several stores and could not find any peach-colored balloons and ribbons. I commented that finding peach-colored stuff is as hard as finding women who had endometrial cancer before menopause. It ain't a peachy ride. We'll figure it out one way or another.
Postscript: Thanks to Amazon.com... we found peach balloons and ribbons. :-)
When I found out I had endometrial cancer, I realized I did not know much about this type of cancer. I knew much more about breast cancer largely because the pink campaign is so strong. It has raised awareness about breast cancer. I knew of other cancers like melanoma, bone marrow, brain and esophageal because I knew people who survived those cancers. Endometrial cancer was a new territory for me.
There was a documentary made about gynecologic cancers: https://vimeo.com/ondemand/nedthemovie/ in hopes to raise awareness about 'below the belt' cancers which include endometrial cancer. I have not seen the film yet but some of the women in the online support group that I am part of shared some tidbits.
1. Equal number of women die from gynecologic cancer as men die from prostate cancer. However, gynecologic cancers receive less than 50% of the funding than prostate cancer does.
2. At a large conference of gynecologists, a gynecologic oncologist asked how many of them heard of the pink campaign. ALL of them did. Many of them donated to the pink campaign causes. Very few in the audience knew about the Foundation for Women's Cancer and none of them have donated to the funding for gynecologic cancer research. Sadly, those are the doctors that women depend on to monitor for early detection of gynecologic cancers.
It certainly helped me understand why Dr. Busch thought my period changes were just normal. Dr. Busch probably did not know anything about identifying warning signs of gynecologic cancers.
I learned about the Foundation of Women's Cancer through my support group (http://www.foundationforwomenscancer.org/) and have found their website to be full of great resources. Here's some information for you all to review: http://www.foundationforwomenscancer.org/wp-content/uploads/Facts-about-Gynecologic-Cancers.pdf.
Today Mike and I were shopping today looking for peach-colored ribbons, balloons, and paper. We went to several stores and could not find any peach-colored balloons and ribbons. I commented that finding peach-colored stuff is as hard as finding women who had endometrial cancer before menopause. It ain't a peachy ride. We'll figure it out one way or another.
Postscript: Thanks to Amazon.com... we found peach balloons and ribbons. :-)
Saturday, February 21, 2015
The Need for a Bias-Free Second Opinion
I continue to have questions. I continue to swim in uncertainty. I wanted to get a bias-free second opinion. I did not want anyone calling Dr. Diaz-Montes and telling me to go with her recommendations. I don't care if Dr. Diaz-Montes is one of the best gynecologic oncologists in the country. I just want someone to give me a second opinion that is NOT influenced by Dr. Diaz-Montes but by facts. The facts from radiology and pathology. Once I get all the information, I would have a better sense of clarity in terms of what I need to do next.
Mike kept on telling me since day one to go to MD Anderson Cancer Center in Houston. He grew up in Houston and knows it is one of the best cancer centers. Earlier this week, I felt ready to look into pursuing a bias-free second opinion. I decided to look for the top gynecologic oncology centers in the country and came across five. Two of them are in Baltimore. Right in my backyard! Johns Hopkins and Mercy Medical Center. Dr. Diaz-Montes did her residency at Johns Hopkins and is currently a director at Mercy. I knew I had to get out of the area to get a bias-free second opinion. Dr. Diaz-Montes has too much influence in the Baltimore/ Annapolis area. That could be a good thing and a bad thing at the same time.
Memorial Sloan Kettering Cancer Center in New York City was named the top cancer center in the United States by the U.S. News. I investigated further and learned that the center is among the top for gynecologic oncology as well. MD Anderson Cancer Center came close though but... New York City was closer to Annapolis. I called to see about making an appointment. They asked me to send them JUST radiology, pathology and lab reports. NOT doctor's notes. I appreciated that. After they got the reports, they called me to schedule an appointment. They said that they wanted me to get the pelvic ultrasound images on a CD, pathology slides, and CT scan images on a CD sent to them before the appointment. This impressed me. This tells me that the oncologist there wants to look at all the images before making a determination rather than going with the radiologist's and pathologist's interpretive reports. Dr. Diaz-Montes did not ask to see any of those nor did she communicate with me if she looked at them. She might have had access to the pathology slides and the CT scan images since they were all done in the same medical center. That's definitely my next question for her when I see her again.
I am looking forward to getting more answers from a different gynecologic oncologist. I hope that the second sentence won't be: "You will need a hysterectomy," as it was with Dr. Diaz-Montes. Show some sensitivity, please.
Mike kept on telling me since day one to go to MD Anderson Cancer Center in Houston. He grew up in Houston and knows it is one of the best cancer centers. Earlier this week, I felt ready to look into pursuing a bias-free second opinion. I decided to look for the top gynecologic oncology centers in the country and came across five. Two of them are in Baltimore. Right in my backyard! Johns Hopkins and Mercy Medical Center. Dr. Diaz-Montes did her residency at Johns Hopkins and is currently a director at Mercy. I knew I had to get out of the area to get a bias-free second opinion. Dr. Diaz-Montes has too much influence in the Baltimore/ Annapolis area. That could be a good thing and a bad thing at the same time.
Memorial Sloan Kettering Cancer Center in New York City was named the top cancer center in the United States by the U.S. News. I investigated further and learned that the center is among the top for gynecologic oncology as well. MD Anderson Cancer Center came close though but... New York City was closer to Annapolis. I called to see about making an appointment. They asked me to send them JUST radiology, pathology and lab reports. NOT doctor's notes. I appreciated that. After they got the reports, they called me to schedule an appointment. They said that they wanted me to get the pelvic ultrasound images on a CD, pathology slides, and CT scan images on a CD sent to them before the appointment. This impressed me. This tells me that the oncologist there wants to look at all the images before making a determination rather than going with the radiologist's and pathologist's interpretive reports. Dr. Diaz-Montes did not ask to see any of those nor did she communicate with me if she looked at them. She might have had access to the pathology slides and the CT scan images since they were all done in the same medical center. That's definitely my next question for her when I see her again.
I am looking forward to getting more answers from a different gynecologic oncologist. I hope that the second sentence won't be: "You will need a hysterectomy," as it was with Dr. Diaz-Montes. Show some sensitivity, please.
The Insensitive Bureaucracy: The Insurance Company
Cancer is a multi-billion-dollar industry. Cancer is expensive. I have not had any aggressive treatments yet. But I am seeing the claims come in. I am truly blessed that my health insurance has been paying A LOT of claims. United Healthcare is a PPO plan I got from Gallaudet University because I am a student there. It's a great plan up until recently. I think what they did not plan on was having to pay so much bills for a graduate student. Yeah, I thought I was going to get my Ph.D. and get out of there. I did not sign up for cancer while I am working on my doctorate. Onward.
I recently noticed they started to refuse to pay for some bills. I called them to verbally appeal. So far there have been five bills that I had to verbally appeal to. Luckily after some insistence on my part, I got them to fully cover three so far. The surgery on January 9th- the removal of the uterine polyps was something they did not want to fully pay for. I called the insurance company to discuss this last Tuesday. The woman I spoke with said that it was an elective procedure, not medically necessary, and that I probably got it done to prevent my chances of getting pregnant. Huh?!!! Uterine polyps PREVENT women from getting pregnant. Elective? I was bleeding too much. I was in pain. I had one then I had many polyps! Did they prefer me to suffer more? I felt the insurance agent I spoke with was very insensitive. I told her that it was that surgery that led to discovery that I had cancer. She wouldn't budge. I hung up feeling angry at the system. This system sucks.
Mike told me that it was time for him to handle the insurance calls. He calls himself a vicious shark. I was happy to give them to him. He called the company yesterday to see about filing a written appeal. But the woman he spoke with was very nice and said that they realized I was right after all. It was medically necessary and they are working on covering the surgery 100%. I will believe it when I see that in my online account that the claims for the surgery have been all paid for. That gives me some hope though.
I do fear though... would they think the hysterectomy when I get that is an elective procedure? That remains to be seen.
I recently noticed they started to refuse to pay for some bills. I called them to verbally appeal. So far there have been five bills that I had to verbally appeal to. Luckily after some insistence on my part, I got them to fully cover three so far. The surgery on January 9th- the removal of the uterine polyps was something they did not want to fully pay for. I called the insurance company to discuss this last Tuesday. The woman I spoke with said that it was an elective procedure, not medically necessary, and that I probably got it done to prevent my chances of getting pregnant. Huh?!!! Uterine polyps PREVENT women from getting pregnant. Elective? I was bleeding too much. I was in pain. I had one then I had many polyps! Did they prefer me to suffer more? I felt the insurance agent I spoke with was very insensitive. I told her that it was that surgery that led to discovery that I had cancer. She wouldn't budge. I hung up feeling angry at the system. This system sucks.
Mike told me that it was time for him to handle the insurance calls. He calls himself a vicious shark. I was happy to give them to him. He called the company yesterday to see about filing a written appeal. But the woman he spoke with was very nice and said that they realized I was right after all. It was medically necessary and they are working on covering the surgery 100%. I will believe it when I see that in my online account that the claims for the surgery have been all paid for. That gives me some hope though.
I do fear though... would they think the hysterectomy when I get that is an elective procedure? That remains to be seen.
Fertility
Do I want to be pregnant? Yes. Will I do ABSOLUTELY ANYTHING to get pregnant? No. Sure it is somewhat emotionally difficult for me to see pregnant women and hearing about friends getting pregnant as I realize my fertility potential is very slim.
I looked for studies that looked at efficiency of megestrol in putting the cancer in remission and success of pregnancy and carrying the baby to term. The number is low BUT there are success stories. In the process of investigating my options, I met other women who had endometrial cancer and were trying to get pregnant. Women with endometrial cancer who are trying to conceive go through rounds. One round means megestrol for three months followed by a dilation and curettage (D&C) to confirm that the cancer is in remission. If not, dosage of megestrol is increased for three months. Then D&C again. I met a woman who has gone through this for two years. I have met other women who have done this several rounds. Dr. Diaz-Montes only will give me one round because she said it's hard on my body and it is risky. That I do agree with. If my cancer is in remission, I will be given a window of three months of being off megestrol and to try to get pregnant. Dr. Hays said I needed to work with a fertility specialist.
Dr. Hays' office sent me brochures and pamphlets about working with a fertility specialist. I felt overwhelmed. I have always felt that babies should be produced naturally. If the universe makes it happen, then it's supposed to happen. I know that many couples have benefited from fertility treatments. I am happy for them. I had to slow down and remind myself that I have never been in favor of fertility doctors and treatments. One... it's costly and often not covered by insurance. Second, it's an emotional roller coaster. Third, it can be taxing on the couple's relationship. Friends were telling me to freeze my eggs for surrogacy. Surrogacy costs a minimum of $100,000 and is not covered by the insurance. An in vitro fertilization attempt costs around $10,000. Several attempts are needed. Again not covered by the insurance. I did read all of the information to see if I felt differently because of the cancer. It was reassuring to see that my perspective has not changed because of the cancer. I do not want to work with a fertility specialist. Cancer is already stressful as it is. I don't need additional stress trying to get pregnant. I will take the three-month window if my cancer is in remission to try whenever Mike and I feel like it. It's not going to be, "Mike... you need to deliver like NOW!!!!!" Dr. Diaz-Montes understood my feelings on the matter and was supportive. I bet if Dr. Hays knew, she would be disappointed. As Mike would say, "There goes her yacht."
I looked for studies that looked at efficiency of megestrol in putting the cancer in remission and success of pregnancy and carrying the baby to term. The number is low BUT there are success stories. In the process of investigating my options, I met other women who had endometrial cancer and were trying to get pregnant. Women with endometrial cancer who are trying to conceive go through rounds. One round means megestrol for three months followed by a dilation and curettage (D&C) to confirm that the cancer is in remission. If not, dosage of megestrol is increased for three months. Then D&C again. I met a woman who has gone through this for two years. I have met other women who have done this several rounds. Dr. Diaz-Montes only will give me one round because she said it's hard on my body and it is risky. That I do agree with. If my cancer is in remission, I will be given a window of three months of being off megestrol and to try to get pregnant. Dr. Hays said I needed to work with a fertility specialist.
Dr. Hays' office sent me brochures and pamphlets about working with a fertility specialist. I felt overwhelmed. I have always felt that babies should be produced naturally. If the universe makes it happen, then it's supposed to happen. I know that many couples have benefited from fertility treatments. I am happy for them. I had to slow down and remind myself that I have never been in favor of fertility doctors and treatments. One... it's costly and often not covered by insurance. Second, it's an emotional roller coaster. Third, it can be taxing on the couple's relationship. Friends were telling me to freeze my eggs for surrogacy. Surrogacy costs a minimum of $100,000 and is not covered by the insurance. An in vitro fertilization attempt costs around $10,000. Several attempts are needed. Again not covered by the insurance. I did read all of the information to see if I felt differently because of the cancer. It was reassuring to see that my perspective has not changed because of the cancer. I do not want to work with a fertility specialist. Cancer is already stressful as it is. I don't need additional stress trying to get pregnant. I will take the three-month window if my cancer is in remission to try whenever Mike and I feel like it. It's not going to be, "Mike... you need to deliver like NOW!!!!!" Dr. Diaz-Montes understood my feelings on the matter and was supportive. I bet if Dr. Hays knew, she would be disappointed. As Mike would say, "There goes her yacht."
The Emotional Aspect of Cancer
While I continue to learn more about this cancer and the treatment
options as well as mentally and emotionally prepare myself for the more
aggressive treatment options, namely--- the big H, I am surprised by how the cancer impacts my view of the world.
Two days after receiving my diagnosis, I went food shopping. I remember moving so SLOWLY in the store as I gathered items. I am usually rushing through the food store and getting out of there within 15-20 minutes with a cart full of food. That day I was SLOW. I was just letting it sink that I have cancer. I stood in the produce section and watched all the scurrying around then I wondered, "How many people in this room have cancer?" Do I feel alone? Yes I do despite the wonderful support system I have. I ache for connection with those who went through what I did. Talking with those who survived cancer helps. I want to talk with more women who had endometrial cancer before menopause. They are hard to find.
Immediately after I found out, I felt like I was given a death sentence. I wanted to quit my job, quit the doctorate program, and just cancel all of my future plans. I took a time-out from work for 1.5 days which helped me recollect myself. Mike told me that I HAD to continue living. Stick with what I am doing and just figure things out as I go along. I am doing just that. I struggled with going to my hair cut appointment. Mike had to push me out of the house to get there. I really like my new hair stylist. She did a great job with my curls. Last night, I willingly went to get my hair colored. I do not know if chemotherapy is in my cards but... I still have hair and I deserve to be pampered. Mike had a conference to attend in Nashville at the end of January. He offered to cancel this trip but I figured Mike needed to continue living just like I did. It proved to be a nice getaway for us as we processed the news. I have a training to attend in Salt Lake City next week that I am looking forward to.
On way back home from Nashville, we took a detour to do the Tail of the Dragon drive. A crazy route-- 318 curves in 11 miles. I ended up posing for this picture above. Later, I realized that it's precisely how I feel about my endometrial cancer (dragon) invading my reproductive system.
The 'slow motion' feeling I was experiencing made me realize that I cannot return to my 'rat race' lifestyle. Routine became hard for me to keep up with. I decided that I was going to take a day at a time. I had to go day by day to see what I wanted to do, felt like doing and etc. Routine came back to me slowly. I am less hard on myself when I do not accomplish what I set out to do. I am more forgiving towards myself. I can only do my best in a day. If I'm not done, there's always tomorrow.
It was interesting to see how the cancer impacted my friends and family. Some of them treat me differently. I am grateful that many of them still treat me the same. They do not realize but they are drowning me in questions that I cannot answer. I felt overwhelmed by all the emails and texts with questions: "What stage?", "How bad is it?", "What are you going to do?" I realize it comes from them caring so much and being concerned about me. I appreciate the concern but those questions do not help. I am just figuring this out as I go along. I continue to learn new things about the cancer. By the way, it has a name.... CANCER. Some people just don't want to use the word: CANCER. Instead, they call it... "the challenge", "the disease", and "the illness." It's simply CANCER, period.
Just be ready to listen is all I ask. Do not drown me with questions. I have the tendency to want to take care of people. And when I see many emails and texts, I want to take care of people's need to know. It gets very exhausting to try to address each email and text when I need to be researching more, preparing for aggressive treatments, participating in cancer support groups, or simply be in the moment.
Family and friends have offered solutions and opinions of how I should handle it. One male said, "Okay why aren't you getting the surgery now?" It felt like it was just simple as 1, 2, and 3. It is not. Sure... I want the cancer out. I wished I had responded to him with this, "How would you feel you had to get your balls cut? Would you just say, 'Okay... what time tomorrow can you cut them off?'" Ironically, endometrial cancer is supposedly the best cancer to have because it is easy to cut out the cancer. I do not think it's that simple. Take part of my liver away. Take part of my brain away. Take my breasts away. Take skin cells away. Cut the tumors out. I'm okay with all that. BUT my entire female reproductive system... AGH. It's not entirely about the fertility. It is about my sexuality. How will it change? I'm 38. I did not expect I would have to go through menopause overnight. Menopause for women in general naturally progresses over a period of a few years. It will happen overnight for me. It is overwhelming for me. I did not sign up for this. Losing ovaries also puts me at higher risk of heart disease and osteoporosis. Both sides of my family have history of heart disease and osteoporosis. Clearly, I want to arm myself with awareness and mentally, physically and emotionally prepare myself well for the surgery without jumping into it and being thrown off. The better prepared I am, the better I can adapt.
One frequently asked question from friends and family that I struggle with the most: "What can I do to help?" I have always been VERY independent. It's who I am. I do not ask for help. Although I have learned over the recent years, it can be good to ask for help. Slowly but surely. I really don't know what my family and friends can do to help. It's hard work to figure that out. If I come up with a list, how do I know you would be able to do those tasks? I remember being sick a few years ago and someone asked me if she could bring me something. I decided to say yes and asked if she could bring me soup. Her response: "You live too far away." Reality: I lived 15 minutes away. One person contacted me via Facebook that really touched me: "I am not going to tell you to ask if you need something. All of my friends who have been where you are say it is easier when folks just offer." Bingo! She offered to send her local family and friends to bring me food when I need to- probably after the surgery. One person offered to do research for me. One sent me apps related to cancer support and resources. One simply sent me a knitted cap to keep me warm. One sent me a care package and made my day. Two sent me flowers. One made a surprise visit and brought flowers. One decides to text me often to check in and to share random comments like I am supposed to be peeling ginger with a spoon as opposed to a knife or peeler. Friends wanted to say prayers for me. Mike offered to take on some calls. I find that I am able to accept offers of help if people are willing to. Just offer to do something and I will respond. Or just surprise me and I will be very appreciative. Don't ask me what you can do for me because the truth is I don't know what you are willing to do.
Two days after receiving my diagnosis, I went food shopping. I remember moving so SLOWLY in the store as I gathered items. I am usually rushing through the food store and getting out of there within 15-20 minutes with a cart full of food. That day I was SLOW. I was just letting it sink that I have cancer. I stood in the produce section and watched all the scurrying around then I wondered, "How many people in this room have cancer?" Do I feel alone? Yes I do despite the wonderful support system I have. I ache for connection with those who went through what I did. Talking with those who survived cancer helps. I want to talk with more women who had endometrial cancer before menopause. They are hard to find.
Immediately after I found out, I felt like I was given a death sentence. I wanted to quit my job, quit the doctorate program, and just cancel all of my future plans. I took a time-out from work for 1.5 days which helped me recollect myself. Mike told me that I HAD to continue living. Stick with what I am doing and just figure things out as I go along. I am doing just that. I struggled with going to my hair cut appointment. Mike had to push me out of the house to get there. I really like my new hair stylist. She did a great job with my curls. Last night, I willingly went to get my hair colored. I do not know if chemotherapy is in my cards but... I still have hair and I deserve to be pampered. Mike had a conference to attend in Nashville at the end of January. He offered to cancel this trip but I figured Mike needed to continue living just like I did. It proved to be a nice getaway for us as we processed the news. I have a training to attend in Salt Lake City next week that I am looking forward to.
On way back home from Nashville, we took a detour to do the Tail of the Dragon drive. A crazy route-- 318 curves in 11 miles. I ended up posing for this picture above. Later, I realized that it's precisely how I feel about my endometrial cancer (dragon) invading my reproductive system.
The 'slow motion' feeling I was experiencing made me realize that I cannot return to my 'rat race' lifestyle. Routine became hard for me to keep up with. I decided that I was going to take a day at a time. I had to go day by day to see what I wanted to do, felt like doing and etc. Routine came back to me slowly. I am less hard on myself when I do not accomplish what I set out to do. I am more forgiving towards myself. I can only do my best in a day. If I'm not done, there's always tomorrow.
It was interesting to see how the cancer impacted my friends and family. Some of them treat me differently. I am grateful that many of them still treat me the same. They do not realize but they are drowning me in questions that I cannot answer. I felt overwhelmed by all the emails and texts with questions: "What stage?", "How bad is it?", "What are you going to do?" I realize it comes from them caring so much and being concerned about me. I appreciate the concern but those questions do not help. I am just figuring this out as I go along. I continue to learn new things about the cancer. By the way, it has a name.... CANCER. Some people just don't want to use the word: CANCER. Instead, they call it... "the challenge", "the disease", and "the illness." It's simply CANCER, period.
Just be ready to listen is all I ask. Do not drown me with questions. I have the tendency to want to take care of people. And when I see many emails and texts, I want to take care of people's need to know. It gets very exhausting to try to address each email and text when I need to be researching more, preparing for aggressive treatments, participating in cancer support groups, or simply be in the moment.
Family and friends have offered solutions and opinions of how I should handle it. One male said, "Okay why aren't you getting the surgery now?" It felt like it was just simple as 1, 2, and 3. It is not. Sure... I want the cancer out. I wished I had responded to him with this, "How would you feel you had to get your balls cut? Would you just say, 'Okay... what time tomorrow can you cut them off?'" Ironically, endometrial cancer is supposedly the best cancer to have because it is easy to cut out the cancer. I do not think it's that simple. Take part of my liver away. Take part of my brain away. Take my breasts away. Take skin cells away. Cut the tumors out. I'm okay with all that. BUT my entire female reproductive system... AGH. It's not entirely about the fertility. It is about my sexuality. How will it change? I'm 38. I did not expect I would have to go through menopause overnight. Menopause for women in general naturally progresses over a period of a few years. It will happen overnight for me. It is overwhelming for me. I did not sign up for this. Losing ovaries also puts me at higher risk of heart disease and osteoporosis. Both sides of my family have history of heart disease and osteoporosis. Clearly, I want to arm myself with awareness and mentally, physically and emotionally prepare myself well for the surgery without jumping into it and being thrown off. The better prepared I am, the better I can adapt.
One frequently asked question from friends and family that I struggle with the most: "What can I do to help?" I have always been VERY independent. It's who I am. I do not ask for help. Although I have learned over the recent years, it can be good to ask for help. Slowly but surely. I really don't know what my family and friends can do to help. It's hard work to figure that out. If I come up with a list, how do I know you would be able to do those tasks? I remember being sick a few years ago and someone asked me if she could bring me something. I decided to say yes and asked if she could bring me soup. Her response: "You live too far away." Reality: I lived 15 minutes away. One person contacted me via Facebook that really touched me: "I am not going to tell you to ask if you need something. All of my friends who have been where you are say it is easier when folks just offer." Bingo! She offered to send her local family and friends to bring me food when I need to- probably after the surgery. One person offered to do research for me. One sent me apps related to cancer support and resources. One simply sent me a knitted cap to keep me warm. One sent me a care package and made my day. Two sent me flowers. One made a surprise visit and brought flowers. One decides to text me often to check in and to share random comments like I am supposed to be peeling ginger with a spoon as opposed to a knife or peeler. Friends wanted to say prayers for me. Mike offered to take on some calls. I find that I am able to accept offers of help if people are willing to. Just offer to do something and I will respond. Or just surprise me and I will be very appreciative. Don't ask me what you can do for me because the truth is I don't know what you are willing to do.
Facebook Postings
I wanted to put all of my initial Facebook posts together in one place here. I am generally a very private person. I do not share the details of my life with the Facebook world often. If I want specific information, Facebook is the place I go to. The only thing I enjoy sharing on Facebook is my travel adventures and proud accomplishments while in the doctorate program. My friend who survived breast cancer is as private as I am and she found Facebook to be a place of support for her during her battle with breast cancer. I decided to give it a try and the rewards have been numerous. Going forward, I will be updating this blog.
Old friends emerged again to support me. New friends were made. People offered me resources and referrals. Survivors of cancer offered their advice.
January 22: Cancer sucks. My perspective on cancer is forever changed now that I have cancer. I am posting this in hopes to be connected with other women who have had endometrial cancer. I am seeking support as I work through my own journey. Please send me contacts privately. Thanks.
January 24: Thanks for the support, y'all. I started hormone therapy today to start treating the cancer. Feeling okay so far-- although a bit tired. I don't know the stage of my cancer yet but finished some tests the past few days to get my stage. Still looking for other women who have had endometrial cancer before menopause. Thanks for all the tips and advice so far! Very helpful!
February 2: I just learned today that a social worker that works in my oncologist's office was assigned to work with me if I need any additional support. When they said it would be a team effort to get me through this, they really meant it. I work with my oncologist, the nurse navigator who takes the time to answer a million of my questions and now the social worker who will give me more resources and information. I understand that more individuals will work with me throughout the whole process. They are introducing them slowly to avoid overwhelming me.
Old friends emerged again to support me. New friends were made. People offered me resources and referrals. Survivors of cancer offered their advice.
January 22: Cancer sucks. My perspective on cancer is forever changed now that I have cancer. I am posting this in hopes to be connected with other women who have had endometrial cancer. I am seeking support as I work through my own journey. Please send me contacts privately. Thanks.
January 24: Thanks for the support, y'all. I started hormone therapy today to start treating the cancer. Feeling okay so far-- although a bit tired. I don't know the stage of my cancer yet but finished some tests the past few days to get my stage. Still looking for other women who have had endometrial cancer before menopause. Thanks for all the tips and advice so far! Very helpful!
February 2: I just learned today that a social worker that works in my oncologist's office was assigned to work with me if I need any additional support. When they said it would be a team effort to get me through this, they really meant it. I work with my oncologist, the nurse navigator who takes the time to answer a million of my questions and now the social worker who will give me more resources and information. I understand that more individuals will work with me throughout the whole process. They are introducing them slowly to avoid overwhelming me.
A question emerged for me while talking with the social worker today...
Do I warn the video relay service interpreters that I will be talking
about cancer before the call is made? Some of the interpreters appear
to struggle with the call context. For me, it feels like an automatic
process... I gotta make a call and I get connected via an interpreter.
Now I want to be sensitive to the interpreter's ability to handle the
call as well. Ethically, they can decline the assignment if they know
it wouldn't make them comfortable but video relay service interpreters
do not know what would come up in calls. Thoughts?
Naomi's note: my experiment with this yielded interesting results. After trying to communicate with VRS interpreters that I am calling about cancer, I have decided not to warn the interpreters. The quality of their work is better that way even though they may wince.
February 4: Today is World Cancer Day. Wear purple.
February 5: Just went to the oncology lab for another test. They had bandages of different colors: purple, hot pink, red, light blue and lime green. Little things like that makes me smile. It's definitely better than the clinical tan! UGH! I picked my favorite color- purple!
February 5: Three weeks ago I got the phone call from my ob/gyn that changed my life. "You have cancer." I was quickly referred to a gynecologic oncologist whose nurse sent me paperwork to fill out THAT same day. This was one of the questions. I was like, "DUH!!" when I picked 10. That was why I got the call from a social worker earlier this week. She wanted to know if I was still at 10. I told her I was at maybe 7-8. There's so much information to learn and process that I am trying NOT to drown. I usually like to take my time to make life-changing decisions. I am on hormone therapy that is temporarily fighting the cancer while I figure out the best treatment options. Alas, I must move fast to make some decisions. All I can do is take it a step at a time while moving fast with all the information-gathering and tests. It does help to have something constant in my life: work, school, home and basic routine. It keeps me going. Thank you all for your support. I'm blessed.
February 15: One month since my diagnosis... I am still taking it a day at a time. It's a continual up and down process. I'm not stage 4 as confirmed by tests. To stage endometrial cancer, my uterus has to be taken out for further testing. I could be somewhere between stage 1 and 3. Right now I'm on a three-month hormone therapy treatment plan to see how the cancer responds to this treatment before going further with more aggressive treatments. I appreciate this time because it allows me to research and process although there are some annoying side effects. The Internet can be one scary place. There are a lot of scary information out there that can easily get me down. I am learning to filter those and keep on looking for valuable nuggets that would help me in the long run. Onward.
February 17: Cancer is expensive. Sure wish medical insurance companies would be more sensitive toward cancer patients. It's already stressful as it is to deal with the disease and now I have to fight them on paying bills. Bills are coming in. I already filed two appeals and won. Now two more to go. I expect to do more as more bills come in. Just got off a phone call this morning and the agent said, "that surgery was not medically necessary." Really? It was to remove cancer cells that kept on multiplying. Hmm. I don't understand this system.
Naomi's note: my experiment with this yielded interesting results. After trying to communicate with VRS interpreters that I am calling about cancer, I have decided not to warn the interpreters. The quality of their work is better that way even though they may wince.
February 4: Today is World Cancer Day. Wear purple.
February 5: Just went to the oncology lab for another test. They had bandages of different colors: purple, hot pink, red, light blue and lime green. Little things like that makes me smile. It's definitely better than the clinical tan! UGH! I picked my favorite color- purple!
February 5: Three weeks ago I got the phone call from my ob/gyn that changed my life. "You have cancer." I was quickly referred to a gynecologic oncologist whose nurse sent me paperwork to fill out THAT same day. This was one of the questions. I was like, "DUH!!" when I picked 10. That was why I got the call from a social worker earlier this week. She wanted to know if I was still at 10. I told her I was at maybe 7-8. There's so much information to learn and process that I am trying NOT to drown. I usually like to take my time to make life-changing decisions. I am on hormone therapy that is temporarily fighting the cancer while I figure out the best treatment options. Alas, I must move fast to make some decisions. All I can do is take it a step at a time while moving fast with all the information-gathering and tests. It does help to have something constant in my life: work, school, home and basic routine. It keeps me going. Thank you all for your support. I'm blessed.
February 15: One month since my diagnosis... I am still taking it a day at a time. It's a continual up and down process. I'm not stage 4 as confirmed by tests. To stage endometrial cancer, my uterus has to be taken out for further testing. I could be somewhere between stage 1 and 3. Right now I'm on a three-month hormone therapy treatment plan to see how the cancer responds to this treatment before going further with more aggressive treatments. I appreciate this time because it allows me to research and process although there are some annoying side effects. The Internet can be one scary place. There are a lot of scary information out there that can easily get me down. I am learning to filter those and keep on looking for valuable nuggets that would help me in the long run. Onward.
February 17: Cancer is expensive. Sure wish medical insurance companies would be more sensitive toward cancer patients. It's already stressful as it is to deal with the disease and now I have to fight them on paying bills. Bills are coming in. I already filed two appeals and won. Now two more to go. I expect to do more as more bills come in. Just got off a phone call this morning and the agent said, "that surgery was not medically necessary." Really? It was to remove cancer cells that kept on multiplying. Hmm. I don't understand this system.
Processing in the Dark
I started megestrol with resistance. I do not like pills in general. I had to take four of them each day. Two in the morning and two in the evening. The first few days, I was bad about it that I would question, "Did I take my pills?" Then I would pour all of the pills on the table and do a recount. I eventually accepted it as part of my routine since then. However, I do not like the side effects. Megestrol is typically given to patients with AIDS to increase their appetite. This did the opposite for me. I lost my appetite. I am rarely hungry those days. I have dry mouth and nose. I am more thirsty. I am out of breath when I do work out which is not the norm for me. I was spotting on a daily basis. I asked about that. They said the spotting is because of the cancer. The longer I am on megestrol, the spotting has slowly diminished.
I am feeling tired more. It's hard to assess if it's the cancer or the hormone therapy.
CT scan was done quickly. At the appointment, I was filling out the form and one question hit me. "Do you have or did you ever have the following...". Cancer. Now I need to say yes to that. The CT scan indicated that the cancer did not metastasize outside the uterus. Therefore I was not stage 4.
I began researching to try to understand this cancer. Some people offered theories which did not help. I was not on a plant-based diet. (I wish I could be on a total plant-based diet but I can't due to other health reasons). I did not take birth control pills long enough. I ate too much soy before when I shouldn't eat soy. I never delivered a baby. I had childhood trauma. Yada yada. FACT: I have cancer. Nothing I can do about my past to change that. Gotta deal with it now.
I really wanted to meet women who had endometrial cancer BEFORE menopause. They were hard to track down. Endometrial cancer is more common in older women after menopause. At my post-op visit with Dr. Hays, she was apologetic. She said that she would have never suspected it was cancer because of my age. If I was older, she would have suspected multiple polyps to mean cancer. I decided to post on Facebook about my cancer. It has helped connect me to the right people and groups. I was able to track down a few women close to my age on Facebook and cancer support forums. Their stories have been helpful.
Dr. Diaz-Montes sent my information to the Anne Arundel Medical Center's Cancer Institute's social worker who called me to offer her support. I later learned that because I circled 10 for my stress level on the initial paperwork was the reason for her call. She asked me where I was at. The call was at the beginning of February. I told her I was somewhere between 7 and 8. I am not as stressed out but... I am still overwhelmed and trying not to drown.
The way I understood it was that there were three paths: 1. full abdominal hysterectomy and experience surgical menopause right away or 2. try to get pregnant if my cancer is in temporary remission from the megestrol. The latter carries more risk since pregnancy hormones can accelerate the growth of cancer. I have to stop taking megestrol in order to get pregnant then do #1 path. OR 3. Do nothing and I have about two years to live. I remain uncertain today but things are becoming more clear as I arm myself with more knowledge about this cancer. I wanted more details. I asked for more tests to help me understand where my cancer was at. Good news: I do not have cervical cancer or ovarian cancer.
I also learned that doctors have differing opinions. Dr. Hays thinks I should get pregnant. Mike said, "It's because it means a new yacht for her." Dr. Hays is a obstetrician/ gynecologist. Therefore, if I was to get pregnant, she would be working with me until the baby is delivered. It benefits her. I wanted to get a second opinion locally. I scheduled to see a different oncologist. I told them it was a second opinion. They told me to send them my reports. When we showed up for the appointment, she told us that she spoke with Dr. Diaz-Montes and agree with her recommendations. Hmph. That defeats the whole point of getting a bias-free second opinion. Agh. I felt backed into the corner. On the top of it, I had to fight for a live sign language interpreter with that office. They insisted on using the video remote interpreting (VRI) machine. I kept on fighting and then the hospital agreed to pay for a live sign language interpreter but said that if I went back to that office again in the future I have to fight with them for a live interpreter. That must change. The principle behind that... if we ask for a sign language interpreter, provide that. No arguments. No resistance. Simple as that. VRI is iffy. It's too iffy for such important appointments like this.
I am a researcher at heart. Heck, I am working on my doctorate. I love to research. I love finding information. In the past, the Internet has been instrumental for my other medical issues. Cancer... not so. There are fear tactics out there. There's an extremist organization that is AGAINST hysterectomy. Unfortunately I found their information which sent me into uncontrollable tears and telling Mike, "I would rather let the cancer kill me!" I have stopped researching. I am just looking for stories from people to help me learn. I have met women with endometrial cancer at stage 1 to stage 4. Their stories are different but learning about their treatment options help me ask questions about my own treatment options.
I was feeling resigned. I wanted more answers. Dr. Diaz-Montes' office has a nurse navigator who was instrumental in answering my questions whenever I had them. But one day I learned she gave me a wrong answer. My trust in her was gone. I no longer call the nurse navigator. I wanted to talk with Dr. Diaz-Montes again. I asked for another appointment to talk about everything with a live sign language interpreter. They agreed and it was scheduled for February 11th. I felt somewhat connected with Dr. Diaz-Montes after the appointment. She answered all of my questions although I wished for more depth and possibly sensitivity. The cancer cannot be staged without taking out the uterus. Once it's out, they will look at the uterus and determine the stage. It was becoming inevitable that my uterus would have to go and I was working on coming to terms with it. I continue to struggle with why some women with endometrial cancer kept their cervix and ovaries while Dr. Diaz-Montes wanted them all out. I tested negative for cervical cancer and ovarian cancer. Grade 1 is a good thing. I asked her how she would treat my surgical menopause. She said she did not want me to go on hormone replacement therapy (HRT) for the rest of my life as it's too risky but will prescribe me for a SHORT period of time to help manage symptoms.
Yet I am part of a surgical menopause support group to learn more about what I need to prepare for. The members disagree with Dr. Diaz-Montes not wanting me on HRT at all for the rest of my life. I really need to understand why. I am seeking for answers on that one.
I was drowning in more questions and so much uncertainty.
I am feeling tired more. It's hard to assess if it's the cancer or the hormone therapy.
CT scan was done quickly. At the appointment, I was filling out the form and one question hit me. "Do you have or did you ever have the following...". Cancer. Now I need to say yes to that. The CT scan indicated that the cancer did not metastasize outside the uterus. Therefore I was not stage 4.
I began researching to try to understand this cancer. Some people offered theories which did not help. I was not on a plant-based diet. (I wish I could be on a total plant-based diet but I can't due to other health reasons). I did not take birth control pills long enough. I ate too much soy before when I shouldn't eat soy. I never delivered a baby. I had childhood trauma. Yada yada. FACT: I have cancer. Nothing I can do about my past to change that. Gotta deal with it now.
I really wanted to meet women who had endometrial cancer BEFORE menopause. They were hard to track down. Endometrial cancer is more common in older women after menopause. At my post-op visit with Dr. Hays, she was apologetic. She said that she would have never suspected it was cancer because of my age. If I was older, she would have suspected multiple polyps to mean cancer. I decided to post on Facebook about my cancer. It has helped connect me to the right people and groups. I was able to track down a few women close to my age on Facebook and cancer support forums. Their stories have been helpful.
Dr. Diaz-Montes sent my information to the Anne Arundel Medical Center's Cancer Institute's social worker who called me to offer her support. I later learned that because I circled 10 for my stress level on the initial paperwork was the reason for her call. She asked me where I was at. The call was at the beginning of February. I told her I was somewhere between 7 and 8. I am not as stressed out but... I am still overwhelmed and trying not to drown.
The way I understood it was that there were three paths: 1. full abdominal hysterectomy and experience surgical menopause right away or 2. try to get pregnant if my cancer is in temporary remission from the megestrol. The latter carries more risk since pregnancy hormones can accelerate the growth of cancer. I have to stop taking megestrol in order to get pregnant then do #1 path. OR 3. Do nothing and I have about two years to live. I remain uncertain today but things are becoming more clear as I arm myself with more knowledge about this cancer. I wanted more details. I asked for more tests to help me understand where my cancer was at. Good news: I do not have cervical cancer or ovarian cancer.
I also learned that doctors have differing opinions. Dr. Hays thinks I should get pregnant. Mike said, "It's because it means a new yacht for her." Dr. Hays is a obstetrician/ gynecologist. Therefore, if I was to get pregnant, she would be working with me until the baby is delivered. It benefits her. I wanted to get a second opinion locally. I scheduled to see a different oncologist. I told them it was a second opinion. They told me to send them my reports. When we showed up for the appointment, she told us that she spoke with Dr. Diaz-Montes and agree with her recommendations. Hmph. That defeats the whole point of getting a bias-free second opinion. Agh. I felt backed into the corner. On the top of it, I had to fight for a live sign language interpreter with that office. They insisted on using the video remote interpreting (VRI) machine. I kept on fighting and then the hospital agreed to pay for a live sign language interpreter but said that if I went back to that office again in the future I have to fight with them for a live interpreter. That must change. The principle behind that... if we ask for a sign language interpreter, provide that. No arguments. No resistance. Simple as that. VRI is iffy. It's too iffy for such important appointments like this.
I am a researcher at heart. Heck, I am working on my doctorate. I love to research. I love finding information. In the past, the Internet has been instrumental for my other medical issues. Cancer... not so. There are fear tactics out there. There's an extremist organization that is AGAINST hysterectomy. Unfortunately I found their information which sent me into uncontrollable tears and telling Mike, "I would rather let the cancer kill me!" I have stopped researching. I am just looking for stories from people to help me learn. I have met women with endometrial cancer at stage 1 to stage 4. Their stories are different but learning about their treatment options help me ask questions about my own treatment options.
I was feeling resigned. I wanted more answers. Dr. Diaz-Montes' office has a nurse navigator who was instrumental in answering my questions whenever I had them. But one day I learned she gave me a wrong answer. My trust in her was gone. I no longer call the nurse navigator. I wanted to talk with Dr. Diaz-Montes again. I asked for another appointment to talk about everything with a live sign language interpreter. They agreed and it was scheduled for February 11th. I felt somewhat connected with Dr. Diaz-Montes after the appointment. She answered all of my questions although I wished for more depth and possibly sensitivity. The cancer cannot be staged without taking out the uterus. Once it's out, they will look at the uterus and determine the stage. It was becoming inevitable that my uterus would have to go and I was working on coming to terms with it. I continue to struggle with why some women with endometrial cancer kept their cervix and ovaries while Dr. Diaz-Montes wanted them all out. I tested negative for cervical cancer and ovarian cancer. Grade 1 is a good thing. I asked her how she would treat my surgical menopause. She said she did not want me to go on hormone replacement therapy (HRT) for the rest of my life as it's too risky but will prescribe me for a SHORT period of time to help manage symptoms.
Yet I am part of a surgical menopause support group to learn more about what I need to prepare for. The members disagree with Dr. Diaz-Montes not wanting me on HRT at all for the rest of my life. I really need to understand why. I am seeking for answers on that one.
I was drowning in more questions and so much uncertainty.
The First Oncology Appointment
Mike and I went to meet with the oncologist for the first time on January 21st. They said they would use the video remote interpreting (VRI) machine rather than getting a live sign language interpreter. I had used the VRI machine at the medical center for a different appointment. It worked okay. Sadly, the machine crashed that day. There was no interpreter.
Dr. Diaz-Montes has a Spanish accent. It was HARD to try to read her lips. Mike is usually a better lip reader than I am but he had difficulty as well. Dr. Diaz-Montes decided to talk to her nurse, Jill, who talked to Mike who signed for me. As a result of this communication breakdown, I felt disconnected from Dr. Diaz-Montes.
Her first question was, "Do you know you have cancer?"
"Yes. That's all we know. Endometrial cancer."
"That's all I know too. We need to do surgery- a full hysterectomy."
I stopped her right there and wanted to know what the other options were. I wanted to know if it is an option to get pregnant. I felt the appointment was very clinical and cold. Not having an interpreter certainly did NOT help either. The information was very fragmented. I also wished she took the time to explain what this cancer is... how it behaves and progresses, before discussing treatment options. She jumped right to the surgery.
We all agreed to get me started on hormone therapy to fight the cancer. A few days later, I got on megestrol which is synthetic progesterone. Endometrial cancer emerges because the estrogen exceeds the progesterone in the body. The megestrol supposedly helps put my body in balance with both estrogen and progesterone and hopefully will make the cancer cells slough away. She also wanted to do a CT scan to see if the cancer metastasized.
The hormone therapy is a way to buy me some time as I figure out all my options and what I want to do next. I was not ready to do the surgery. I typically prefer to prepare well for major changes in my life.
I left still feeling in the dark with many many more questions. And I was not ready to trust my oncologist.
Dr. Diaz-Montes has a Spanish accent. It was HARD to try to read her lips. Mike is usually a better lip reader than I am but he had difficulty as well. Dr. Diaz-Montes decided to talk to her nurse, Jill, who talked to Mike who signed for me. As a result of this communication breakdown, I felt disconnected from Dr. Diaz-Montes.
Her first question was, "Do you know you have cancer?"
"Yes. That's all we know. Endometrial cancer."
"That's all I know too. We need to do surgery- a full hysterectomy."
I stopped her right there and wanted to know what the other options were. I wanted to know if it is an option to get pregnant. I felt the appointment was very clinical and cold. Not having an interpreter certainly did NOT help either. The information was very fragmented. I also wished she took the time to explain what this cancer is... how it behaves and progresses, before discussing treatment options. She jumped right to the surgery.
We all agreed to get me started on hormone therapy to fight the cancer. A few days later, I got on megestrol which is synthetic progesterone. Endometrial cancer emerges because the estrogen exceeds the progesterone in the body. The megestrol supposedly helps put my body in balance with both estrogen and progesterone and hopefully will make the cancer cells slough away. She also wanted to do a CT scan to see if the cancer metastasized.
The hormone therapy is a way to buy me some time as I figure out all my options and what I want to do next. I was not ready to do the surgery. I typically prefer to prepare well for major changes in my life.
I left still feeling in the dark with many many more questions. And I was not ready to trust my oncologist.
How It All Began....
Back in May 2014, I noticed that my period was changing. I was bleeding heavily. It was becoming painful. I was getting concerned. I thought maybe it was my hemochromatosis acting up and getting rid of excess iron through menstruation. I kept an eye on it anyway.
July 2014: I was walking to a hair appointment in Washington, DC when I suddenly felt a sharp pain in my uterus. The pain was overwhelming that I passed out right on the sidewalk. I was puzzled by this. Around the same time, I got a postcard from the gynecology office reminding me that it was due for my pap smear. Perfect timing.
August 2014: My pap smear and follow-up visit. I explained to the gynecologist, Dr. Busch, that I was bleeding WAY more than normal and I was in a lot of pain. It was NOT normal. Her response: "It is normal." She told me I would need endometrial ablation if I couldn't bear with it any longer. For now, she would prescribe me Naproxen Sodium 500 mg to help with the pain. I asked her if she was going to order tests or ultrasound to look to see what's going on. She said she didn't need to. Hmph.
October 2014: My iron levels were dropping. My hematologist was puzzled and concerned. I told her about how my periods were much worse. She said that I should get a pelvic ultrasound and I need to go to my gynecologist to get that done. I told her that the gynecologist wouldn't even LOOK. She decided to order one for me anyway. I had a pelvic ultrasound done the following week.
November 2014: My hematologist called me and said that I had a polyp and two fibroids in my uterus which could explain why my periods were different. She said I needed to get it taken care of right away with my gynecologist. At this point, I knew I did not want to work with Dr. Busch anymore. After all, she wouldn't even LOOK. I was preparing for a move to Annapolis in December so I thought I would see about finding a new gynecologist to work with to get that polyp taken care of. New patients are usually seen much later but after I sent them the radiologist's report, they wanted to work with me.
Christmas Eve: I met with Dr. Hays, my new gynecologist, in Annapolis. She told me that the polyp needed to go as it was causing me to bleed heavily and causing pain. Surgery was scheduled for January 9th. I was going to have hysteroscopy to remove the polyp along with dilation and curettage.
January 9: The big day. I was in and out of the hospital in four hours. Dr. Hays told me in recovery that they found multiple polyps. She gave me pictures of a few polyps. She said she was not worried as they were probably benign and I will finally see relief with my menstruation going forward.
I left feeling better that I had those removed. I went home to recover from surgery and to get back to my life. I was still bugged by the fact I had ONE polyp and then it multiplied.
Turned out it was cancer after all.
July 2014: I was walking to a hair appointment in Washington, DC when I suddenly felt a sharp pain in my uterus. The pain was overwhelming that I passed out right on the sidewalk. I was puzzled by this. Around the same time, I got a postcard from the gynecology office reminding me that it was due for my pap smear. Perfect timing.
August 2014: My pap smear and follow-up visit. I explained to the gynecologist, Dr. Busch, that I was bleeding WAY more than normal and I was in a lot of pain. It was NOT normal. Her response: "It is normal." She told me I would need endometrial ablation if I couldn't bear with it any longer. For now, she would prescribe me Naproxen Sodium 500 mg to help with the pain. I asked her if she was going to order tests or ultrasound to look to see what's going on. She said she didn't need to. Hmph.
October 2014: My iron levels were dropping. My hematologist was puzzled and concerned. I told her about how my periods were much worse. She said that I should get a pelvic ultrasound and I need to go to my gynecologist to get that done. I told her that the gynecologist wouldn't even LOOK. She decided to order one for me anyway. I had a pelvic ultrasound done the following week.
November 2014: My hematologist called me and said that I had a polyp and two fibroids in my uterus which could explain why my periods were different. She said I needed to get it taken care of right away with my gynecologist. At this point, I knew I did not want to work with Dr. Busch anymore. After all, she wouldn't even LOOK. I was preparing for a move to Annapolis in December so I thought I would see about finding a new gynecologist to work with to get that polyp taken care of. New patients are usually seen much later but after I sent them the radiologist's report, they wanted to work with me.
Christmas Eve: I met with Dr. Hays, my new gynecologist, in Annapolis. She told me that the polyp needed to go as it was causing me to bleed heavily and causing pain. Surgery was scheduled for January 9th. I was going to have hysteroscopy to remove the polyp along with dilation and curettage.
January 9: The big day. I was in and out of the hospital in four hours. Dr. Hays told me in recovery that they found multiple polyps. She gave me pictures of a few polyps. She said she was not worried as they were probably benign and I will finally see relief with my menstruation going forward.
I left feeling better that I had those removed. I went home to recover from surgery and to get back to my life. I was still bugged by the fact I had ONE polyp and then it multiplied.
Turned out it was cancer after all.
The Initial Shock
January 15, 2015 was the day my life changed. I received a call from my gynecologist who had pathology results from a surgery I had six days earlier. She quickly asked how I was recovering from the surgery and then said that she had the pathology results. She said, "The polyps tested positive for cancer." It was awkward. It was relayed via a video relay service (VRS) interpreter who was a male and who I knew vaguely as he previously dated one of my good friends. I could see he was taken aback by having to interpret that information. It suddenly became a blur. I asked what I needed to do next. My gynecologist said that I needed to see a gynecologic oncologist right away who would help me figure out the next steps. She recommended Dr. Diaz-Montes. I was completely lost. The call ended quickly. An hour earlier I found a DevaCurl hair specialist in my new town of Annapolis and had booked a haircut for the following weekend. I thought to myself, "Do I even keep that appointment?!"
I walked up to my partner, Mike, and told him I had cancer and started crying. It was like a death sentence was just given to me.
I was in such a fog but managed to call Dr. Diaz-Montes' office right away to see when I can book the first appointment. After getting records sent over to their office, they called me to book the first appointment for January 21st. I had to wait SIX days in the dark wondering what this all meant for me. I was sent some paperwork to complete before the appointment. One question that stood out for me. DUH! I just found out I have cancer. What would my stress level be like?
I asked Mike to take me to the stores so I could just escape from all that for a moment. Window shopping became fruitless because I was wondering things like, "Will I live to buy that kayak?" I told some friends and they had a million of questions. "What kind of cancer is it?" "How bad?" I didn't know the answers. I decided to reach out to a friend of mine who survived a battle with breast cancer because I knew she would understand. We connected via video that night and that talk was instrumental in terms of what my next steps should be.
What was clear is that I need to know more from the pathology report because my gynecologist just said the word: CANCER. I could have asked more questions but I was in complete, utter shock to be able to think of more questions. The next morning, I went to the ob/gyn office to get the pathology report.
"INVASIVE WELL DIFFERENTIATED ENDOMETRIOID TYPE ADENOCARCINOMA FIGO GRADE 1".
I really wanted to research online about this. I was advised to wait until I meet with the oncologist before getting lost in the Google-land. I briefly looked anyway and learned that it is endometrial cancer. It is a form of uterine cancer. Then I waited just for a day.
The next day, I looked more. And I started to break down. Treatment options typically include surgery. I had to give up my entire reproductive system to beat this cancer? That sucks.
I walked up to my partner, Mike, and told him I had cancer and started crying. It was like a death sentence was just given to me.
I was in such a fog but managed to call Dr. Diaz-Montes' office right away to see when I can book the first appointment. After getting records sent over to their office, they called me to book the first appointment for January 21st. I had to wait SIX days in the dark wondering what this all meant for me. I was sent some paperwork to complete before the appointment. One question that stood out for me. DUH! I just found out I have cancer. What would my stress level be like?
I asked Mike to take me to the stores so I could just escape from all that for a moment. Window shopping became fruitless because I was wondering things like, "Will I live to buy that kayak?" I told some friends and they had a million of questions. "What kind of cancer is it?" "How bad?" I didn't know the answers. I decided to reach out to a friend of mine who survived a battle with breast cancer because I knew she would understand. We connected via video that night and that talk was instrumental in terms of what my next steps should be.
What was clear is that I need to know more from the pathology report because my gynecologist just said the word: CANCER. I could have asked more questions but I was in complete, utter shock to be able to think of more questions. The next morning, I went to the ob/gyn office to get the pathology report.
"INVASIVE WELL DIFFERENTIATED ENDOMETRIOID TYPE ADENOCARCINOMA FIGO GRADE 1".
I really wanted to research online about this. I was advised to wait until I meet with the oncologist before getting lost in the Google-land. I briefly looked anyway and learned that it is endometrial cancer. It is a form of uterine cancer. Then I waited just for a day.
The next day, I looked more. And I started to break down. Treatment options typically include surgery. I had to give up my entire reproductive system to beat this cancer? That sucks.
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