New Blog Site Created

 I've been diagnosed with kidney cancer. I have created a new blog for this journey. 

https://naomikidneycancerjourney.blogspot.com/2026/05/a-new-day-facing-kidney-cancer.html  

Waiting for answers: My kidney biopsy experience

 Preparation for the biopsy involved a 24-hour clear liquid diet starting Sunday morning. I decided to give protein water a try because I have been paying more attention to my protein intake. The protein water I got had 20g of protein each bottle. I ended up hating it. It tasted so horrible. I even convinced my husband to sample it, and his reaction was totally priceless. It gave me some good laughter on Sunday evening, which somewhat helped reduce the anxiety about the biopsy. I liked apple juice, regular water, sparkling water, fat-free chicken broth, and black tea. I will stick to those going forward. 

I researched online to get myself prepared for the biopsy and found this video. It didn't help my anxiety, but at least I was knew what to expect. 

The staff at iNova Alexandria Hospital's Interventional Radiology unit were great and took excellent care of me. I hate needles. I usually allow them to insert IVs into the inside of my right elbow. I am used to that entry point.  Since I had to be laying on my stomach with my arms above the head during the procedure, they had to put the IV in my hand. After being wheeled into the room and lining up the bed to the patient table of the CT scan, I was instructed to flip over. They covered me well with heated blankets and ensured I was comfortable in that position. I had to remain that way for over an hour. They gave me medication to put me in a moderately sedated state. I was in and out of it throughout. They encouraged me to sleep if I could. I slept for most of the procedure. I could feel the table moving in and out. I could feel the needle going inside me. Near the end, I was hurting from the needle in my kidney. They took four samples from the tumor. Results will come in 5 to 7 days.

After the procedure, I was taken to the recovery room. I had to stay there for four hours to make sure I had no internal bleeding. I was not allowed to drink nor eat for one hour after the procedure but, I fell asleep for about two hours. When I woke up, I was allowed to drink and eat again. I wasn't hungry but had water and orange juice. Later on, I wanted applesauce. They would not discharge me until I could pee and my blood test showed no internal bleeding. They looked in the toilet bowl to make sure there was no blood in my urine. There was none. The blood test cleared me. They examined the incision site, and there was no bleeding. I was discharged a bit after 3 PM.

I felt pain at the incision site and some muscle pain in the back. I was not given any pain medications but I learned that a combination of Tylenol and ibuprofen worked quite well and allowed me to sleep through the night. Today, I am taking it easy as I rest and recover. I am moving with more easily today. I cannot lift anything more than 5 pounds for a week. I am looking forward to my first shower later this afternoon and to removing the bandage on my back. I cannot immerse myself in bath nor pool until the wound closes, which could take anywhere from 3 to 7 days. My husband and I are flying to Greece Friday night to celebrate my 50th birthday (the actual birthday is in June but May is a good time for us to go). We will need to adjust our plans so I don't get in the water until it is safe to do so. There's plenty to do in Greece without being in the water anyway. 

I have an appointment with my urologist on June 5 to discuss the next steps. 

My ovaries are in the clear

It might help to read the previous post: https://naomicancerjourney.blogspot.com/2017/01/the-genetic-test-results.html 

Back in 2015, in order to address the endometrial cancer I had, they had to remove my cervix, uterus, and Fallopian tubes. I was able to keep my ovaries because I was too young to go through the surgical menopause. I knew my ovaries were disconnected and became "homeless" hanging somewhere in my pelvic cavity. Since then, part of my surveillance plan has been to undergo a pelvic and transvaginal ultrasound every two years to make sure my ovaries are healthy, primarily because I had endometrial cancer and had an uncertain variant of the BRIP1 gene. I have not been notified by the genetic testing center whether the that the variant is a definitiely positive or negative. 

My right ovary is easily visible. My left ovary is not. I dread the transvaginal ultrasound because it would be painful as they probe, trying to find my left ovary. Whenever I was due for the ultrasound, I would mentally send a message to my left ovary: don't roam too far away, and don't be so camera-shy. There was one instance when the technician called another technician, and they worked hard to locate my left ovary. It took them 45 minutes. Ouch. 

I was due this year for this ultrasound. On March 30th, when I was in the ER, they ordered an ultrasound. Great... I thought I could get this routine examination over with. Not quite. The technician found my right ovary easily but did not try hard enough to find my left ovary. Since they found the tumor in the kidney, my gynecologist wanted me to do the ultrasound again to visualize my left ovary and make sure there were no issues. 

The ultrasound was done immediately after the pre-biopsy labs last Wednesday afternoon. I was dreading it and hoped they would find my left ovary quickly. The technician acknowledged that she had to find my left ovary. She found it in 10 minutes. She apologized for hurting me by going too deep and pushing against my vaginal cuff to locate it. I told her I appreciated that she was able to find it. She took the time to explain that she could see that my ovaries were previously stitched to the pelvic wall. This was done during the hysterectomy in a procedure called ovarian suspension (oophoropexy) so that ovaries would not wander too far. This procedure became the standard of practice around the time I had my hysterectomy. I was intrigued. I inquired why it was so hard for others to find my left ovary in the past. She said it was because the left ovary was suspended higher in the pelvic cavity. She used my vaginal cuff as the guide to find scar tissues that developed around the stitches that dissolved, tracing the path to the right ovary and then to the left ovary. I asked her to show me the images, and I was fascinated. I could see it. She went further to explain that ovaries do shrink in size after hysterectomy. My left ovary is much smaller than the right ovary, so that it's easy to overlook. She beamed with pride when she said that she has been doing this for 22 years and knew how to find ovaries that are more difficult to find.

Right ovary measurement: 2.1 x 1.1 x 2.0 cm

Left ovary measurement: 1.3 x 0.6 x 0.7 cm

My gynecologist emailed me yesterday morning: "Great news - your ultrasound looks normal. Both ovaries look great!" I felt so relieved about that. Now I can just focus on figuring out this kidney tumor. 

The Genetic Test Results

 I originally wrote this post in January 2017 but just realized that I never published this until now. I had forgotten it was in the drafts.... but this is relevant to my next post. 

------ 

 January 2017

This post is definitely overdue.  In part, I was trying to wrap my head around it.  The initial appointment with the genetic counselor discussing the results was overwhelming in itself.  I needed the time to process and understand what my genetic test results meant.  I spoke with a brilliant guy who loves genetics.  I am grateful to my colleagues who helped connect us.  He helped me understand genetics somewhat better.  I think I need years of study before I fully understand the whole genetics thing.  I am grateful to him for helping edit this post.

My take-home message was that while it is good news that I tested negative for all 25 cancer genes, but it's still a MAYBE.  I MAY still have a risk because I have a variant of one gene.  Can you see why this can easily mess with one's head?  It's like, "You're okay... but... wait a minute... maybe...."

While I was in the process of understanding all the information I was given, Dr. Jewell's initial recommendations that I have my breasts and ovaries removed utterly freaked me out.  I put the genetics test results aside for the time being.  I think I avoided dealing with it because I did not want to face the possibility I may have to go under the knife again.  Three surgeries in one year is simply too much.  I do not want any scalpel near me for a long time.

As I stated in an earlier post, I was tested for the following genes:

BRCA 1/BRCA 2
MLH1
MSH2
MSH6
PMS2
EPCAM
APC
MUTYH Biallelic
MUTYH Monoallelic
CDKN2A (p16INK4a)
CDKN2A (p14ARF)
CDK4
TP53
PTEN
STK11
CDH1
BMPR1A
SMAD4
PALB2
CHEK2
ATM
NBN
BARD1
BRIP1
RAD51C
RAD51D

The bold-faced ones are tied to uterine/ endometrial cancer.  I tested negative for those.  Hence, I will never know why I had endometrial cancer.  It could be a combination of environmental and physical factors.  I tested negative for all cancer genes.  However, I have an uncertain variant of the gene BRIP1 (italicized).  Specifically, my genetic test results state the following: "c.2220G > T (p. GIn740His).  At this point, we do not know if this variant poses a cancer risk.  There's not enough data.  If and when there are additional data, they will be able to make an informed conclusion whether that variant is a concern or not.

The BRIP1 gene is tied to ovarian and female breast cancer.  The risk for ovarian cancer with this gene is at 8.3% or higher while the risk for the general population is 1.1%.  The risk for breast cancer is at 10-20% or higher and 10.2% for the general population.

During this process, I also insisted that Dr. Jewell follow through with her promise to get a consult with MSKCC's Genetics Team.  Genetics team said I had to travel back to New York City for a formal consultation.  I was not willing to do that because I already had the genetics counseling appointments locally.  I was frank with Dr. Jewell about my feelings.  I told her that I wanted to discuss my genetics test results with her and her quick response was that maybe I should play it on the safe side and get my breasts and ovaries removed.   I further explained that recommendations contradicted with my genetics counselor's recommendations.  And I was not willing to get a formal consultation with the Genetics Team at MSKCC to find out if Dr. Jewell had sound recommendations.  Instead of talking with Dr. Jewell via her nursing staff, Dr. Jewell finally replied to me directly after a few weeks:

"I did reach out to the genetics team to clarify what the current recommendations are for variants of undetermined significance since this is an evolving area of research and I am learning about these new mutations.  Unfortunately, the genetic counselors at MSK do not make recommendations about patients without a formal consultation. However, I did find out that in general surgery is not currently recommended for these variants of uncertain clinical relevance. That said, family and personal history are components of the conversation with the genetic counselors to determine final treatment plans. I really am unable to offer more guidance. It seems that your local genetics team is up-to-date and a good resource. The genetics team here continues to be available if you would like to pursue their more personalized opinion."

That reply calmed me a bit.  "Surgery is not currently recommended for those variants..."  Then I decided to put it all aside for a while.  The whole process caused me some emotional turmoil.

It was much to my relief to learn that Dr. Angel share similar recommendations as the genetic counselor.  I do not have to do anything right now.  I have to be monitored continually to make sure nothing else comes up.  That means routine CA-125 tests which looks for tumor markers for ovarian cancer plus routine mammograms.  I have had two CA-125 tests done since August and am in the clear.  I had a mammogram last September and everything looks good.  I will be having an ultrasound of my ovaries in February because I mentioned that I was feeling some pain in the ovaries from time to time.  Before the cancer, I had functional ovarian cysts on a monthly basis.  I had become accustomed to this monthly pain.  After the hysterectomy, I only experience it once every few months.  I mentioned this to Dr. Angel at the November appointment.  She raised her eyebrows and looked at her nurse practitioner who was also in the room.  She said it would be worthwhile to take a look to see how my ovaries are doing.

Women with BRIP1 are recommended to consider surveillance, oophorectomy (removal of ovaries), or chemoprevention to manage the risk of ovarian cancer.  Since the risk for breast cancer is almost similar to the general population, regular or frequent screenings are recommended.

It's not confirmed that I tested positive for BRIP1.  I just have an uncertain variant.  What does this mean for me?  I just have to go on with my life and participate in the surveillance plan for my ovaries and breasts on top of the ongoing surveillance plan for endometrial cancer.  The genetics lab will notify my genetic counselor if there has been a change in the data regarding the gene variant.  My genetic counselor explained to me that I must constantly communicate with the office if my contact information changes so they can find me if and when new information emerges.  It could be next year... it could be in five years... it could be 20 years... it could be never.  I am not going to sit around and wait.  I'm going to live my life and deal with it if and when I get the phone call from the genetics counselor.  We don't know.  Genetics research continue to expand exponentially.

The genetics genius that I spoke with explained that I do have the BRIP1 mutation but I have a variant of that mutation.  "c.2220G > T (p. GIn740His).  The letter T is the variant as opposed to the letter G.  It is unknown at this time if that variant would mean I have an increased cancer risk.  It could be a good variant but it could also be a bad variant.  He said that BRIP1 gene mutations are related to the well-known BRCA1/BRCA2.  It is important to emphasize that having a gene mutation does not mean one would get cancer.  It just means there is a risk.  There are number of factors that cause the cancer to emerge.  He said that the variant is one thing but I may have other genetics that came into play that caused the endometrial cancer.  I asked how the mutation and variant happen.  He said it was a result of years and years of evolution and environmental factors that caused our DNA to mutate.  It is through our biological survival mechanisms that create variants.  At times, variants could mean more bad news, but they could mean nothing.  There's no clear answer.   Essentially, we are still swimming in the land of unknown with this whole genetics business.  

The Reality: Coordinating Medical Care

Despite the news of my "suspicious cancer," the rest of our week in Colorado was amazing. We got a lot of snow, creating a gorgeous snowy mountain backdrop for the start of our marriage. There was so much happiness between my sweetie and me as we joined together in a wedded bliss. It was such a beautiful memory, and I am forever grateful for that!

Coming back home was hard, as reality does bite. I knew I had to deal with coordinating my medical care-- getting all those tests scheduled. I remember back then when I had endometrial cancer: I was working full time and in a doctorate program as well. I had to take a leave in between my completed doctoral coursework and my dissertation because coordinating medical care, plus going to all those appointments, felt too much for me to fully focus on my dissertation work. When I was done with all that, I was excited to go back to campus to get rolling. One of the faculty members in the program commented that she was happy to see that I was "finally motivated again" to work on the dissertation. Ouch. I did not "stop being motivated." No... this nerd loves to be NERDING continually! It just was not possible for me to juggle the dissertation work with all the stuff that came with being a cancer patient. I hope this story serves as a reminder to my audience of how much work it is to handle all that. It's not as simple as scheduling a regular medical appointment and showing up. It takes a lot more than that. 

The challenges of coordination so far: 

• The medical system does not have a streamlined communication across departments leaving the patients to work hard in digging up information. Unfortunately, some patients just give up because it's so frustrating. 
• My urologist told me I had to call this number to schedule my biopsy. I called that number, only to be told that it was the wrong number. I was told to call another number. The second number said it was not the right number and then gave me a different number. The third number was the lucky charm, but they wanted to wait until I called before determining whether it was medically necessary. They did not start the review process after receiving the order from the urologist I waited a day for them to get that. 
• My urologist said I cannot fly for 1-2 weeks following the biopsy but when I spoke with the interventional radiology team, they said I can indeed fly the next day or two. I just cannot lift heavy things for a week. I had thought I had to wait until the end of June. The sooner the better-- we will know more details about this kidney tumor and develop a treatment plan. I scheduled the biopsy for this coming Monday. I had mentally prepared myself for the biopsy to happen later in June based on the initial information I got, but now I am increasingly nervous because Monday feels way too soon. I had to schedule pre-biopsy labs for today, throwing a wrench in my schedule. 
• As a deaf person, I have to deal with access issues. At my first appointment with the urologist, I missed some information because the sign language interpreter was not qualified. I had to read the clinical notes from my doctor in MyChart to get the whole picture. This morning, I emailed the iNova's Language Accessibility office and instructed them not to send me that particular interpreter again and to request credentialed interpreters. Unfortunately, some interpreting referral agencies try to earn a higher profit margin by sending non-certified interpreters. Medical interpreting is a high-stakes type of work, and medical systems need to avoid contracting with agencies that have lower rates because it's cheaper. It just means getting cheaper interpreters who are not qualified to do medical interpreting. 

Going through the motions again

It has been a long while since my last post which celebrated my seven years of remission. Unfortunately, I am going through the motions again after doctors found a tumor in my right kidney. 

On March 30th, I was awakened very early with a horrible pain in my lower right abdomen, accompanied by nausea. I could not figure out what was causing this pain. I tried to walk around to see if it would ease-no luck. I took ibuprofen. I went back to bed and tried to sleep a bit more. No luck. Eventually, I called the nurse hotline and they recommended that I go to the emergency room immediately. I was like, bleh. After my last run-in with cancer, I generally do not like going to the hospitals. By the time I arrived at the ER, the pain had worsened. They checked me in right away and a doctor saw me quickly- it was a quiet Monday morning. They gave me a dose of morphine, which did nothing. A second dose? Still no relief. Next came fentanyl, which dulled the pain slightly. They ran a series of tests and scans to figure out what was going on. 

While waiting for results, I checked my email and saw a message from HysterSisters reminding me that it has been 11 years since my hysterectomy. I found it bizarre that I ended up in the ER on that exact anniversary.

They ruled out appendicitis, gallstones, and a few other possibilities. Ultimately, they could not explain the pain and suggested that it might be viral. They sent me home with medication for pain and nausea. BUT- they also noticed something on my right kidney during the CT scan and strongly recommended follow-up. A renal neoplasm. I was shocked. 

My internist wanted to see me that Wednesday to discuss next steps and referred me to a urologist. The soonest appointment was April 23rd. Waiting three weeks was challenging but I managed to keep myself busy. I am deeply grateful for my wonderful fiancé, who continually reminded me to stay in the present and focus on one thing at a time. 

April 23rd: The urologist explained that 80% of this type of tumor is cancer. That was terrifying. He ordered another CT scan- this time with and without contrast- because the ER scan had used contrast only, which can affect imaging clarity. 

On Friday, May 1st, I had the CT scan. The radiologist explained they had needed to image both the veins and arteries near the kidney because this type of cancer can spread through them. For better imaging, they had to inject more contrast in me. As a result, I was very sick afterwards and did not feel better until about 24 hours later. 

This morning, I received the results and a message from my urologist: "Your CT scan did show that this mass on your right kidney enhances in a manner that is suspicious for a type of kidney cancer." I took a few moments to cry, feeling scared about what comes next. The urologist said that the next step is a biopsy. The complication is that I am traveling a lot in May and June. After the biopsy, I am can't fly for at least a week. He said it was okay for me to wait until June to get the biopsy done when I finally have  a full week at home. 

From my journey with endometrial cancer, I've learned the importance of staying in the present moment and dealing with things one step at a time. 

I am currently in Colorado getting married this week- a joyful event that my fiancé and I had so much fun planning. We met when he was 19 and I was 13, here in Colorado. We grew up loving this beautiful place and decided to marry in the same state where we first met, even though we did not begin dating until many years later. 

We set the news aside and went to the Summit County Court Clerk's Office to apply for our marriage license. Afterward, we drove to Glenwood Hot Springs, a place we used to visit when we were younger. That was quite a treat. Next, we drove to the area where we will be married in two days and admired the stunning mountain backdrop. We are especially excited because a winter storm is expected to move through the mountains starting tomorrow and continuing into Wednesday, which should give us  snowy scenes for our photos. 

It feels fitting that today is May 4th- Star Wars day. May the Force be with me as I navigate this next chapter with my health. 

Seven years and counting...

 A friend asked me last night what the return of rate was for 7 years. To be honest, I had no idea. I never thought about recurrence rates. I decided to investigate this. Endometrial cancer if detected early have 90 percent of survival. Recurrence rate for those who caught the cancer early on is 2-3 percent within the first five years. After that the rate goes down. 

 What is life like for someone who has been in remission for seven years?

Sometime cancer is like an afterthought for me. 

Sometime I find myself feeling grateful for my insistence on finding someone who was wiling to look to see what was up with my painful and heavy menstruation.  

 I continue to struggle with survivor's guilt when I see accounts of others dying of cancer. 

Whenever I feel pain in my pelvic region, I wonder if it's cancer rearing its ugly head.

I have moved forward. I recently returned to my gynecologic cancer support group at the Memorial Sloan Kettering Cancer Center as they now hold all of their sessions on Zoom (thanks, COVID-19) to seek answers and support on some things I am dealing with now as I approach perimenopause. It was nice to come back after a few years and seeing familiar faces and making new connections.

A student of mine mentioned earlier this week that she knew nobody with cancer. I told the class that once you have had cancer, you would know many. 

Another friend asked me yesterday if it was taking an emotional toll on me to support others in their cancer journeys because it seemed like it has been many times. Nope it does not. I remember when I first got diagnosed, I was desperate for information and could not find the answers I needed from my own deaf community.  Now that I have information, I am happy to share. Within the deaf community, there is the shared value of reciprocity. It just comes naturally to me. But when those people who reach out to me end up dying, that is when it is so hard for me emotionally. 

 

Celebrating five years in remission during the #stayhome era

Five years ago today, I received news that my cancer was in remission. I remember making a promise to myself that I would celebrate big for the one-year and five-year anniversaries. In light of the COVID-19 pandemic, I am staying at home instead. Today is just another day of #stayhome. This morning I gave the refrigerator a deep cleaning. This afternoon, I have a two-hour meeting. And I am doing some laundry and writing as well. Nothing memorable.

Strangely, the COVID-19 had some similarities with the time I had cancer. I was asked not to travel because my immune system was weak during that time. I remember feeling so trapped at home. I was also living with an abusive partner at that time who made my life, including the recovery, much more difficult. This is why my heart breaks when I think of how the #stayhome impact people who are being abused at home.

When I was given the green light a few months after receiving remission news, I was so thrilled to travel again. Remarkably so, I have traveled a lot more since then. It is like I have a desire to experience as much as I can in this lifetime. I had several trips between March and July cancel because of COVID-19. Admittedly, I do feel trapped but somehow, I am finding some blessings in this experience. I remember back then, staying at home meant I was given the time to re-evaluate my life and finding enhanced enjoyment in my favorite hobbies. It was during that time that I knew I had to get out of that unhealthy relationship. Additionally, I did some introspective work that prompted me to make other changes in my life. Five years later, by staying at home during this pandemic, I am back to re-evaluating my life. Having this time is valuable and I have been "too busy" in the past few years to do this deep introspective work.  I woke up this morning with a realization that this time of self-exploration is a gift in itself. Indeed, it is a celebration of how far I have gone in the past five years and a way to look forward to new changes in the next five years.

Immunocomprised or not?

Well... it has been a while.  That happens.  I got so busy with living and working too much.  My cancer journey became an afterthought for me although there are some days I am reminded of it.  When I get those random reminders, I often process a blog post in my head but... never actually typed those words.  Then coronavirus (COVID-19) happened.  I am stuck in my own home not able to travel nor work out in the field.  This gave me a luxury of time to blog again for now....

There has been a lot of talk about how individuals who are immunocompromised are considered high-risk if exposed to COVID-19.  My sweet, dear husband has been really worried about me.  I insist that I am not immunocompromised.  I continued to accept assignments outside the home last week and this week.... I figured that those might be the last jobs I will see for weeks to come so I was willing to take them.  What does that mean for me?  Am I risking myself?  Am I risking others?  It is hard for me to figure out because there continue to be many unknowns.  Most of them were medical interpreting jobs.  I figured people still needed access.  I took a lot of precautions: washing hands, not touching my face, and using hand sanitizer every five minutes at medical facilities. 

My husband's comment "you ARE immunocompromised!" kept on ringing in my head.  I have been in remission for almost five years.  My health has been good since then except for developing asthma after moving to Minnesota.  This danged frigid weather!  This first winter was a pain.  The second winter, which we haven't been done with yet, has been much better.  I have not had any asthma attacks since the freezing temperatures in November.  I actually feel really great those days.

Back to the original question: am I immunocompromised?  I researched high and low but was unable to come across any clear answers.  One website said that survivors of cancer may be immunocompromised depending on how long it has been since their treatments along.  One medical website said that survivors who are not getting active treatments probably do not have the same level of risk of those receiving treatments.  I was going to ask my doctor this question last Thursday but...  she cancelled that appointment.  Too bad HealthPartners charge $45 for each email question so I will refrain from asking. 

Truth be told, I am still confused.  For now, I will just stay home as much as I can.  It does help that I actually like the husband.... and the three dogs that live in this house. 

In Memory of Susan Lynn Crouch

Even though it has been a while since I last blogged (life has been quite interesting...), I am touched every time I learn about how my blog helps other women.  I have met with some deaf women via video to answer their questions about uterine/endometrial cancer or hysterectomy.  One of those women was Susan.  But what made Susan unique was that I already knew her.  I met Susan in 2002 when I moved to San Diego.  I remember she was so warm and welcoming.  Moving to a new place can be challenging and I have done a lot of moving in my life.  Susan's warm nature was like an open embrace to welcome me to San Diego.  Over the years, we have met up with other woman walkers.  At the beginning of this year, a mutual friend told me that Susan was diagnosed with breast cancer and then they found out she had ovarian cancer as well.  I was happy to talk with Susan.  We met via video a couple of times and talked a lot using Glide.  She said she read all of my blog posts.  She had many questions about undergoing the surgery to help her prepare for her full hysterectomy.  While I was supporting her through the preparation and recovery, she was selfless enough to root for me to finish my Ph.D.  She was ever so optimistic after her hysterectomy.  I remember the day she sent me a Glide message proudly showing me the series of photos that Laura Harvey had taken of her fingerspelling cancer in American Sign Language.  The letter C was shaped with an extended middle finger to represent "fuck cancer."  We bonded over those photos and agreed... yes.  Fuck cancer.  She was hopeful.

I was so heartbroken to learn that she passed away last Saturday.  I struggled on Saturday evening after learning of her passing.  "Why? Why?!  Why take this amazing person from this earth?!"  With the current trying times,  this world needs someone as sweet as her to lighten up things.

Susan, your soul will still shine on.  Thank you for allowing me to be a resource for you.  Until we meet again someday... hugs.

"Not Living": Is that really a cancer prevention strategy?

I have pretty much thrown myself deeply into my academic life.  Oh... it's so good to be back after being out of the circuit for almost two years.  I am writing and publishing.  I am giving talks.  I am networking.  I am now collecting data for my dissertation.  Basically, I am nerding.  Life is good.

A while ago, a friend reported to me that he noticed someone making a comment when there was a discussion on social media about a particular food that should be avoided because it had a possibly of causing cancer.  Someone made a comment that if one was really concerned about cancer, one should not live.

His comment made sense from one viewpoint.  Cancer is so scary that it seems to be caused by many things: food, toxins in our air, chemicals in things we use daily, etc etc.  If one truly wants to be safe from cancer, then one should not live.  Basically, as long as you are alive-- there's a risk of getting cancer... getting sick with something else, etc.  We're basically screwed, yes?  On the other side of the coin, that comment can be offensive.  It could be read as "stop living," or "if you are scared of potential cancer-causing stuff, then what's the point of living?"

As a survivor for over two years now, I am truthfully more conscious about what things may cause or prevent cancer.  I have made some changes.  I am more aware of what things to avoid.  I try to lead a healthy life.  If I read a new research alerting me of potential risks, I would definitely pay attention!  My body unfortunately has the mechanism to produce abnormal and cancerous cells.  The risk is there.  Sure, it is under control since the uterus, fallopian tubes, and cervix were removed.  This is why I am in remission.  Quite frankly, I really don't want to deal with surgeries and treatments again.  So if I want to avoid anything that could trigger that mechanism in my body, I most certainly will pay attention.  This is because I think my life is good and I want some more mileage out of this one.

So if I pay heed to newest research about things that could cause cancer, I call that living... by being aware of risks and prolonging my life because I want to continue nerding for a while longer.  Thank you very much.

ABD!

ABD has a double meaning for me now.

First, ABD is known within academia to mean a person is completed with all the requirements of a doctorate program except for the dissertation (All But Dissertation).  I officially received my ABD status on May 8th when I passed my dissertation proposal defense.  I overcame another hurdle.  The private session with my committee after my 35-minute presentation to the public was so long and grueling that after an hour has passed, I was exhausted and ready to give up.  They finally excused me for their private deliberation.  When they called me in to tell me I passed, I cried.  The committee members were surprised by my reaction.  I explained I was so emotional because the cancer had put me off my track and it was a difficult struggle to get back on the train, so to speak.  I'm finally back on the track to become Dr. Naomi.

I was so stressed out a couple of weeks leading up to the day of defense.  I wanted to be sure nothing else would prevent me from getting to that milestone.  I planned for several months to do the 5 Boro Bike Ride in New York City.  And when my dissertation committee voted for May 8th out of three possible dates, I groaned.  The bike event was May 7th.  I was to ride 40+ miles the day before my dissertation proposal defense. Oy vey.  Onward.  I was waiting for the weather in Rochester to warm up so I could begin training again.  I had not ridden my bike since before I had cancer.  I didn't start training until around four weeks before the event but did not get to train much because the weather wasn't cooperating.  I used the bike ride as way to process my feelings about the cancer and getting back on the track.  It was a powerful moment when I biked past the place where I had my surgery.  I was surprised that I finished each single mile.  The final stretch was the Verrazzano-Narrows Bridge.  It was hard and long but they painted inspirational messages on the road that applied to the ride itself, my cancer, and my dissertation journey that sustained me all the way to the finish line.

I am truly excited about my dissertation work.  I am now awaiting the approval from the university's Institutional Review Board (IRB).  It was the cancer that changed my dissertation topic.  I had a completely different idea and threw it out after getting cancer.  I felt it was important to investigate how extralinguistic knowledge influence translations of cancer words and concepts.

The second meaning of ABD is something I came up a couple of weeks ago out of inspiration.  ABD= All But Disease which is similar to what oncologists say NED (No Evidence of Disease).   May 22nd was my final three-month checkup.  I was done with undergoing two years of quarterly checkups.  My oncologist has given me the title of survivor.  I discussed in an earlier post about different meanings of survivorship (http://naomicancerjourney.blogspot.com/2016/02/the-different-meanings-of-survivorship.html).  Oncologists label their patients as survivors if there has been no evidence of disease for two years.   For the next two years, I will have biannual checkups.

Two Years of Remission

I have been so engrossed in my dissertation work this semester that I almost forgot about the April 14th anniversary date.  Fellow cancer survivors highly recommend that this anniversary date is observed by doing something great.  One survivor I know of leaves the country on the anniversary date.  What a grand idea! :-)   I did that last year.  This year... I decided to stay in the country since I have some trips coming up.   I found this quaint bed n breakfast place out of town to chill out.  I also came here to write.  Yes, continue writing my dissertation proposal.  This Ph.D. life= no life! *grin* The proposal defense date is fast approaching!  Alas, I figured that since I sorely missed blogging, I would give myself a break and blog on this special date.

It seems so surreal that two years have passed.   So much has happened since I said farewell to the cancer.  Many happenings.  Many changes.  Cancer can come and go just like that throwing one's life off balance and then...  survivors somehow just move forward... continuing to make cancer a more distant memory. 

I just got over a bad case of viral bug that had me sick for about nine days.  That was the longest I have been sick since the cancer and post-surgical infections.  I was so frustrated because it was taking my time away from my dissertation proposal.  It was also like a trigger for me.  I did not choose to be sick and bedridden for so long that year.  I was becoming increasingly anxious that I did not get better after a couple of days.  I wanted to send my committee an updated proposal that would not require any major revisions before my defense date.  I did not.  The time in bed gave me a chance to rest, recover, and reflect.  I think I am hard on myself with the dissertation work.  It felt like the prospect of getting my doctorate was yanked out of my reach when I got cancer.  When I got back on track, I realized that I wanted a completely new topic focusing on medical interpreting and cancer.   Finding the focus took time.  I finally have my focus and know where I am going with this.  The topic is fun and exciting.  Feeling the pressure after presenting my past research studies at a recent international research symposium and the defense date approaching, I pushed myself to work on my proposal.  I had been giving up social events so that I can get this thing done with.  It was so important to me that I finish.  The Ph.D. dream is something that I am desperately holding on to and do not want to let go of.  Being sick made me realize that I need to slow down a bit... and enjoy life a bit.   If I take a couple days longer to finish my proposal, it's okay.   I WILL finish this proposal.  I feel stressed out partly because if I don't defend my proposal this semester, I have to wait until the fall semester to defend.  I really want to start collecting data over the summer rather than waiting.  

Truth be told, it was awesome watching a lot of Netflix while dealing with this bug.  I was so SICK of Netflix after a couple of months two years ago and I didn't mind this time around but I want to do my own thing again.  I am back on the Ph.D. track as I appreciate my continuing remission status.

Yesterday was the first day I ventured out to see people after being sick.  I attended my first support group gathering for Deaf women cancer survivors.  It was a nice kick-off to my two-year celebration.  They have different activities every time they meet.  Last night: art therapy.  That was a nice release from pounding away on the keyboard.  One woman said that life after cancer is about maintaining faith and living your life.  True that.  

Another Cancer Patient's Perspective

I came across this wonderful blog post that beautifully summed up the cancer journey.  The writer is an oncology nurse who got diagnosed with cancer herself and she finally understood what it means to be diagnosed with cancer and to fight.

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

While she and I had different rides with cancer but the feeling is definitely mutual.  Simply put, any cancer journey is multilayered and complicated.  It is an ongoing process even after reaching remission. 

Two years have passed... and I'm still here

January 15th came and went.  It marked two years since I got my cancer diagnosis.  I was happily on my first real vacation in four years.  Sure I travel quite a bit but it was always for work, school, or I was going on a trip and still needed to work.  This trip gave me a chance to really unplug and leave my laptop behind.  I went on a yoga retreat at a remote beach location in Mexico.  I only brought my books and journal with me.  I read so much on that trip.  I meditated several times each day.  I did a lot of yoga.  I came back feeling really rejuvenated.  It was freeing to leave the country without worrying that I might need medical attention right away.

The host of this retreat said that we could take periods of silence to focus on ourselves.  I decided to make January 15th my day of silence to observe the two-year mark.  It was sensitive for me because like my last post said, doing nothing was an option I considered.  I woke up that morning loving the smell of the ocean.  I was reflecting that if I had done nothing, I might not be on that trip.  I may be nearing the end of my life.  I'm not sure what that end would have looked like but I certainly do not want to try to imagine it at all.  I'm here and that is what matters the most.

Two years ago... after I got the call,  I was in complete shock.  I immediately called the gynecology oncology office.  They said they needed to get my information from my gynecologist first before they could schedule an appointment with me.  They promised to call me within the next two hours.  I texted a few close friends telling them the result of my hysterscopy and dilation/ curettage.   They bombed me with so many questions that I could not even begin to answer.  "How serious is it?"  "How much time do you have left?"  "What stage?"  "When do you start chemotherapy?"  I immediately shut down.  I wanted to get out of the house.  I wanted to walk around.  I needed fresh air.  I went to the local shopping center and walked through stores aimlessly.  I kept my phone close to me because I was waiting for the call.  They called and said they had my information and could see me in six days.  They asked me to have my other doctors send them my records via fax.  I took this screenshot and ironically I just came across it today.  The look on my face reminded me of the fear and confusion I was feeling that day.  Yet there is a hint of hope in there.  

On the day of silence at the yoga retreat, I was surprised I did not process the whole cancer journey as much as I thought I would.  I was actually focused on the yoga retreat.  Enjoying the ocean.  Doing asanas and meditations.  Playing with a dog that came up to me with a coconut to play fetch.  I was reading the book, Power of Now once again and gaining new insights.  I was observing how others reacted to my decision to observe silence the whole day.  Silence can be uncomfortable for people.  Silence can be a state of bliss.  It gave me the space I needed for introspection.  

I did one thing that day though... something I have not done for a long time.  After my shower, I took a moment to observe and study the scars from my two surgeries, noticing how they have healed.  I touched them for the first time in a long time.  It was time for me to embrace those scars.  Those scars represent an extension in my time on this planet.  Ironically after that experience, I received a massage at the yoga retreat a couple of days later from a woman who touched my scars.  It was like the universe told her to focus on those areas.  She also worked on my entire abdomen and pelvic area where the uterus once was.  After being thrown off for a quick moment, I realized that the touch was definitely soothing and healing.

I felt truly blessed that I was able to go on that trip to Mexico.  I did different asanas during the yoga retreat that reassured me how far I have come.  Quite truthfully, I realized on that trip that I am still living my life doing great things and there are still much more I want to do and experience.  

Doing nothing is still a choice

Let me first begin with a metaphor... it snowed during the night.  Chocolate, native to Hawaii, hates snow.  He rarely surprises me by playing happily in the snow.  This morning I took him out.  Whenever there's fresh snow on the ground, I usually put on his coat and booties and let him walk leash-free.  I want him to have control in deciding where to go in the snowy land.  He peed twice.  I was walking down the street following our usual route when I realized he was not keeping up.  I turned around and I see him pausing in the middle of the sidewalk.  He was visibly uncomfortable with the snow.  I asked him if he wanted to come with me.  He stood there thinking about what he wanted to do then he turned back.  He was running back home.  I turned back and followed him.  He was happily waiting by the door.  He had made the choice not to poop.  What it means for him... he has to deal with the consequences that come with that choice.  He'll hold until later this morning or when he tells me he needs to go just to ensure he's warm and comfortable indoors.

The point is.. only we can make our own choices and we are products of our own choices.  Each choice comes with consequences.  Consequences can be either good and bad.  That's the simple truth.

As I am approaching the two-year mark since I got that phone call telling me I had cancer (January 15th), I am reminded of the second appointment I had with Dr. Diaz-Montes with an interpreter.  After I gained better understanding about my treatment options, I asked how much time I had left if I did nothing.  The interpreter was baffled and asked me, "Do I voice that?"  Duh.  Yes.   I could see she struggled because it was against her own value system.  She proceeded to voice my question.  Dr. Diaz-Montes was shocked.  Not surprising.  After all, she is in the business of saving lives.  After Dr. Diaz-Montes regained her composure, she said that if I did nothing I had two years to live.  I processed this.  Dr. Diaz-Montes insisted, "Don't do nothing!"  I said that I had to consider ALL the options and that doing nothing was still an option.

Treatment options include chemotherapy, radiation, surgery, hormone therapy, and medications.  Those treatment options are not guarantees.  Oncologists use experiences with previous patients to help them establish the prognosis for future patients.  Remember as I said in an earlier post (http://naomicancerjourney.blogspot.com/2015/03/cured-or-not.html), there's no cure for cancer.  It can be controlled.  Sometime the cancer gets to the point that it cannot be controlled anymore.

Why did I consider doing nothing as one of my possible options?  I had read the pros and cons of each treatment option.  I have spoken with cancer survivors who said that if they had to do it all over again, they would have opted not to do anything.  Surgeries, chemotherapy, and radiations messed them up so much that they felt they missed out on having the quality life.  And they struggle with the aftermath up to this day.  While I am fortunate that my cancer was detected very early preventing the need for chemotherapy and radiation, I still have some lingering aftermath from everything I went through.  Those are fading slowly though.  The process I went through to control my cancer was definitely not peachy.

I was talking with a friend the other day telling him that when it is my time to go, it is my time to go.  I am not scared.  He got really upset by this.  I think that the cancer helped me feel at peace about death.  I remember when I got the call, I was freaking out thinking about death.  In reality, death is a natural part of the life cycle.  

I recently learned of someone who made the choice to do nothing to control his cancer.  A good number of people were upset with his choice.   Ultimately, it was HIS choice to make.  He realized that his cancer was too aggressive and he wanted to spend his final days enjoying life and appreciating his connections.  Remember, by choosing not to fight the cancer is not exactly the same as giving up.  It is not an act of resignation.  It is a choice to maximize on life as much as possible with the remaining time he had. I had to wrestle with this choice myself.  I thought about two options.  I could use the remaining two years I had to travel and see more of the world.  I could write more.  I could see all of my favorite people again.   Or I could go through treatments to control the cancer.  Those two paths were significantly different.  Our choices pave our paths in life and we deal with the good and bad consequences as we progress in our own journeys.

Now that the two-year mark is approaching, I am deep in my own introspection.  People often ask me if I regret going through what I did.  Based on my studies in Buddhism, life should not be of regrets.  Just roll with your choices and embrace the lessons that come with them.  The answer is I do not regret anything I went through the past two years.  It sucked, yes.  There were bad and good consequences which I accepted as part of the path I have paved for myself.  The bottom line, I am eternally grateful that I had the freedom to make informed choices for myself.  

Gynecologic Cancer Survivors Support Group: A Closed Chapter

I was thrilled to return to my support group meeting at Memorial Sloan-Kettering Cancer Center via video last week.  I was unable to participate for the past few months because it conflicted with a class I was teaching.  It was also bittersweet because I had to say farewell.  The cancer center decided to change their programming and was not going to offer the support group meetings in the regular location where videoconferencing was available.  They were moving to a different location and the new location does not have any videoconferencing capability.  If I want to participate, I would have to go back to the Big Apple.  I do not have any problem going back.  After all, I love the city.  It's going to be difficult because with the teaching I do here in Rochester, I cannot get away to attend the support group meetings.  I am sure at one point down the road, I'll be able to pop in and say hi to my fellow cancer warriors.

My wonderful Resources for Life after Cancer social worker is retiring tomorrow.  It was my final farewell to her as well.  She's amazing.  She was the one who made the videoconferencing possible.  I love that she mailed me information and resources.   I also had to say farewell to an interpreter who had been with me for a long time.  Bittersweet, indeed.

I was pretty quiet throughout the whole meeting... largely because I was having a hectic day.  But I was just absorbing everyone's stories and experiences.  I could relate to some but did not relate to some.

Do I need a support group now?  I am not sure.  My life is pretty full as it is now.  The support group was instrumental in helping me recognize that I was not alone in my own experience.  The group members validated my feelings, struggles, and fears.  If I was experiencing things I could not explain to those who never had cancer, they would tell me I was not alone.  The support group was what I needed the most for a specified period of time.  I don't know what my needs will be in the near future but if I happen to be in New York City on a third Tuesday of the month, I am definitely attending a meeting!  It is often said that shared experiences connect us.  For sure, I do find myself bonding with fellow cancer warriors.  I met a cancer survivor at a holiday gathering recently and we immediately bonded.  While I am not finding support through the group anymore, I continue to find support by meeting people unexpectedly.  That is, in my perspective, the universe's way of reminding me that I am never alone.

A Case of Pathologies

I am sitting outside enjoying the cool Floridan morning as I am happily blogging again.  I have been reflecting the past few days about how my life in Rochester is completely different from the life I had in Annapolis.  Annapolis was all about medical issues and healing.  I have been in Rochester for almost a year now and it has been about moving forward.  I gave up a year of my academic life to focus fully on getting myself back to good health.  This year has been about reclaiming my academic life.  I have returned to teaching interpreting after a 10-year hiatus.  I am loving it! :-) What I had forgotten was how time-consuming teaching is!  There's preparation, grading, and discussions with students.  With my full-time job, my dissertation work, and teaching, there was almost no time for me to blog.  I continue to come up of new posts to write and the words remain stirring in my mind waiting to be typed out. I shall be on a writing spree this winter break.

This post is about a case of pathologies.  I learned a few months ago that every single time I get a new oncologist, they would order pathology study of my cancer cells.  Remember the purple and pink cells on a slide that I held in my hand?  Dr. Hays was my gynecologist who removed the uterine polyps and ordered pathology study of those polyps.  Since Dr. Hays and Dr. Diaz-Montes (my first oncologist who I did not want to work with after the initial two appointments) were in the same medical center so there was no need for Dr. Diaz-Montes to order a new pathology study.

When I sought a third opinion at the Memorial Sloan Kettering Cancer Center, Dr. Jewell ordered another pathology study.  I did not realize this.  Remember, I was so overwhelmed by everything so the little details mattered none to me at that time.  I got a bill from the University of Rochester Medical Center for a pathology done on August 8th.  I was confused because I did not go to a lab or anything.  I had not seen a doctor for any part of me to be taken for pathology.  Upon further investigation, I learned Dr. Angel ordered a pathology study of my cancer cells.  I inquired as to why.  My take was this: "It has been confirmed that I had endometrial cancer and the cancer cells are gone... what's the point of trying to prove it again and again?" 

Dr. Angel's staff explained that it is customary for any oncologist to order pathology study of the original cancer cells.  They do not want to take the other oncologist's lab report at face value.  I decided to go back and read ALL three pathology reports and I found conflicting details.

Anne Arundel Medical Center: "Invasive well-differentiated endometrioid type adenocarcinoma. Figo grade 1."

Memorial Sloan Kettering Cancer Center: "Endometrioid adenocarcinoma involving an adenomyomatous polyp. Figo grade 1.  Complex hyperplasic with atypia.  Endometrium is profilerative." 

University of Rochester Medical Center: "Endometrioid adenocarcinoma with mucinous features. Figo grade 1" 

I asked Dr. Angel at my three-month follow-up apointment last month about why those reports are different.  She gave me the most beautiful explanation.  She said that my cancer cells are like a painting.  Each pathologist interpret the painting differently.  All of them confirmed that I had endometrioid adenocarcinoma which is one type of endometrial cancer.  I was baffled by the "mucinous features" because based on my research, it is a rapid-spreading type.  Dr. Angel said my cancer cells had mucinous features but did not fit the criteria to be called "mucinous".  Mucinous indicate it is a type that spreads rapidly.  Upon learning this, I was relived I had the surgery sooner than later.  

She also reviewed the Memorial Sloan Kettering Cancer Center's surgical pathology report of my uterus, tubes, cervix, and lymph nodes after they were removed.  She gave me much more details than Dr. Jewell did.  I left my appointment with Dr. Angel wondering why Dr. Jewell was not forthcoming with me.  Perhaps she did not want to overwhelm me.  I'm not sure.  Dr. Angel said that at the time of diagnosis (after studying the purple-pink cells), I was definitely at Stage 1.  Figo grade 1 is typically associated with Stage 1 (not always, though).  It is not clear whether I was at Stage 1A or Stage 1B.  She said that after I was diagnosed, I immediately started hormone therapy.  The god-awful Megestrol that made me feel horrible.  After two months, the hormone therapy was working.  My cancer cells became precancerous.  Dr. Angel said that it was a good thing I had the hysterectomy because the cancer would have come back after stopping hormone therapy.  It is possible that if I did not do the hormone therapy and took the time to decide, my staging might get worse considering the 'mucinous features'.  Dr. Angel said that on a bright note, because my cancer has gone from Stage 1 to precancer, it is pretty likely that the endometrial cancer would never come back.  However, because of my genetic test results, we have to carefully monitor my breasts and ovaries going forward to ensure that breast and ovarian cancers do not emerge. 

The review of my pathology reports and the conversation with Dr. Angel were instrumental in helping me get the full picture of everything.  It also helped reconfirm that I had made the right decision.  Dr. Diaz-Montes wanted me to get the hysterectomy right away but I was not ready.  I had to mentally and emotionally prepare myself.  I started hormone therapy immediately to buy me some time before I went along with the hysterectomy.  As much as I hated hormone therapy, I do appreciate undergoing hormone therapy because it did actually work.   

It's a bad time to have cancer

It was extremely difficult to wake up to the news this morning that Trump is our next president.  A million thoughts came to my mind in terms of what it is going to mean for women, Deaf people, people of color, LGBTQIA individuals, minority groups, individuals with disabilities, domestic and sexual violence survivors, and etc. etc.  It is clear that this country is divided.  I can only hope for unification.  But how?  I don't see it but am holding out for hope nonetheless.  Now how is this political depression even related to my cancer blog?  Let me explain in a moment.

I dragged my hopeless self to the Wilmot Cancer Center at 7 AM to do my routine bloodwork.  As I said to my friends, life does continue and I have to continue participating in my surveillance plan.  I did feel for a moment, "What is the point!?!" but I pushed myself to move forward.  I will see my oncologist Tuesday morning for my next three-month appointment for additional screening tests.

I walked home from the cancer center and it already started raining.  I didn't have an umbrella but I walked very slowly in the rain instead of running.  I figured the weather gods were crying and that I might as well cry along with them.

I dived into my work all day today while watching the news and Facebook news feeds.  What broke my heart is seeing how the division of this nation has driven a wedge into the endometrial cancer support groups on Facebook.  We turn to each other for support and resources.  I observed with sadness as those group members who once lifted up each other immediately turn against each other. The argument is mainly over Obamacare.  There are members who are terrified that they might lose the insurance coverage that helped save their lives and continue with their surveillance plans.  There are others who appear to be insured with insurance coverages through sources other than the healthcare marketplace who insist that Obamacare sucked and that Trump would come up with something better.  Fear and hatred are on the rise within those groups.

I was on an Obamacare plan August 2015-January 2016.  This insurance coverage was instrumental in making sure I could continue with my surveillance plan AND to treat the post-surgical infection I had that lasted over six months.  It was Obamacare that paid for my surgery #3 in October 2015 to get rid of the infection and I got follow-up care to monitor the surgical wound.  I am on a group health plan right now but I am forever grateful that Obamacare was available to me when I needed it the most.  I know there are numerous women who are battling endometrial cancer who depend on Obamacare.  The same is true for numerous individuals who are battling other types of cancer. Granted, Obamacare costs were on the rise and that was frustrating for me.  That needed to be addressed and Hillary was commited to working on that.  Completely removing Obamacare and replacing it with what?  I have no idea what is up Trump's sleeves but I can only conclude that it is definitely a bad time to have cancer.

September: Endometrial Cancer Awareness Month

Of course life continues to keep me busy as I dealt with numerous deadlines.  I have an academic writing life as well so focused my energy on that the past couple weeks.  With those past behind me, I can blog again.  It does help that I am relaxing in the Santa Monica mountains outside Los Angeles as I write this post.  Sometime getting away is good for the writing soul.  In the past two weeks, I was tackling a publication deadline along with submitting presentation proposals.  I published another paper.  I was grateful to see it coming out a couple of weeks ago.  Initially, I did not know if I wanted to submit this paper to the editors.  It was due March 1, 2015.  At that time, I was realizing that the hormone therapy was not working out for me.  I had to decide the next steps.  It was a stressful time.  I was an emotional wreck and feeling so horrible constantly.  Somehow I found it inside myself to submit the paper.  I figured that it was the first draft and it was pretty decent as it was my qualifying paper for my doctorate program.  I had to pass that before I could enter the dissertation proposal stage.  It was nice to see it coming out and reflecting on what has changed since March 1, 2015.

September is here!  So is Endometrial Cancer Awareness Month.  There is one thing I want emphasize.  If you believe your menstruation symptoms are different such as heavier bleeding, blood clotting, and cramps are more painful, go get yourself checked right away!  Sadly, there are many gynecologists would would tell you it's normal and that you are getting older.  Pain prescriptions would be given.  That was my experience with my first gynecologist.  She said I needed to live with it as I was getting older and gave me Naproxen Sodium 500 mg.  I did not stop there.  I kept on fighting and looking for someone else who would take a look, namely a transvaginal  and pelvic ultrasound.  My hematologist ordered for that because she was worried I was losing a lot of blood.  I have met a good number of women in the past year who spoke of worsening menstruation symptoms but they couldn't get anyone to take a look.  I met this woman who was diagnosed with stage 4.  She didn't know.  She spoke of how she told her gynecologist that she was having pelvic pains constantly even when she was not menstruating.  Her gynecologist didn't bother to order any imaging studies.  Now she has stage 4.  Her prognosis isn't looking good and she is facing some difficult treatments down the road.   

I remember I read some articles last year that spoke of how many gynecologists are not trained sufficiently to notice potential cancer symptoms, especially in younger women.  There is an ongoing belief that "below the belt" (gynecological) cancers typically happen in older, post-menopausal women.  That was true for a long time but it's now happening to younger women.  Heck, I met a 19-year-old woman who got endometrial cancer.  It's becoming the new reality.  Gynecologists continue to tell their younger patients that they are too young to have cancer.  My gynecologist said the same thing then she was flummoxed when she had to tell me it was definitely cancer.  This needs to stop.  It's becoming a harsh reality that younger women are getting gynecological cancers.  Any unusual symptom needs to be examined thoroughly rather than telling the patients to suck it up. 

The bottom line... if you believe your menstruation symptoms are atypical, please take steps to get it checked out.  Insist on imaging studies.  Don't give up.  Advocate for yourself and your health.