Category: surviving cancer

I have access to health insurance through my job. This is probably the best scenario a person diagnosed with cancer. But still, you can see below the cost of caring for cancer in America is overwhelming.

My treatment bills totaled $55,550. This was for testing and surgery, including the hospital stay. My insurance deductible was $3750 plus co-pays. The co-pays add up fast.

My husband and I had already been using the Total Money Makeover system before I was diagnosed with cancer. I highly recommend it.

Negotiate Your Medical Bills

As bills came in I had to remind myself not to freak out and that insurance would dispute some of them. Once my insurance company had negotiated them down, I disputed and negotiated the final bills. This is super important. Dig in and fight with billing administrators.

Ask for discounts, financial services departments, supervisors, and the like. You can usually lop something off a bill just by being tenacious, kind and persistent. It’s hard to do during treatment, but try not to get emotional– just be breathe and be persistent. Call every day if you have to and work on them until they give you what you need.

Keep Notes

Keep super accurate notes. When you are speaking with administrators in person or online, write down the date, time and ask for each person’s name. All of this served me greatly as I worked the system.

Payment Plans

Once you settle on a price, then set up a realistic payment plan. Pay what you can. If you run into trouble and can’t make a payment, call them. This will keep your bills from landing in collections and on your credit report. Never avoid calls from medical billing. Just pick up the phone and tell them the truth. I know this can be sure hard if you are feeling sick, are tired of the bureaucracy, or just simply depressed. You can do it!

Fundraise with Family & Friends

I hated this part. I was reluctant to do a fundraiser, but my friend Lilly told me to drop my ego and let people help. (THANK YOU to Lilly and everyone who helped during treatment! I needed you and you were there.)

After Treatment

I am now in a NED (no evidence of disease -wahoo!) state, but the bills continue. I have regular visits with my oncologist and lots of screenings that get expensive. But with my kind of genetic cancer (MSH6 / Lynch Syndrom) reoccurrence is common and screens are the best ways to ensure a long life. Catch it early, knock it out.

Including my cost of insurance, I continue to pay about $400 to $500 per month on medical expenses. We continue to live on a tight budget in an effort to get these obligations cared for.

The Cost of My Treatment

JAN 2018

• $50 co-pay for follow up appt
• $324 insurance

DEC 2017 

• $440 hospital stay
• $500 anesthesia for surgery
• $50 co-pay for follow up appt
• $16 labs
• $21 labs
• $40 pathology
• $100 presurgical testing
• $2009 lost wages
• $324 insurance

NOV 2017

• $78 medical supplies
• $100 co-pay to hospital for surgery
• $1300 biopsy surgery
• $510 anesthesia for original biopsy
• $100 MRI
• $327 medical supplies
• $19 lab tests
• $40 pathology tests
• $324 insurance

OCT 2017 

• $50 co-pay for consult with urologist
• $20 co-pay for surgical medical clearance
• $50 co-pay for consult with surgeon
• $324 insurance

SEPT 2017

• $60 surgery deductible
• $34 labs
• $20 co-pay for medical clearance
• $324 insurance

Uterine cancer is also called endometrial or womb cancer. People don’t talk about it enough… perhaps because it mostly happens to older women? Perhaps because women are not sharing their grief with this diagnosis? But uterine cancer can also happen to younger, body positive, fearless women like me. For example, I have a genetic syndrome. I got this shit younger than most.

Below are the signs that got me into the doctor’s office. Some of them I have had for a long time and did not know they were signs of cancer. (It’s a little like the frog in a pot of hot water analogy. I am the frog. Cancer is the HOT water. I was not dropped into the hot water. I was gently set in a nice pot of warm water. Life slowly turned the heat up on me. I stayed in the pot, blissfully unaware until it was suddenly it was painfully obvious that I am in a pot of hot water!)

I’d love it if I could help a few people get diagnosed a little earlier and better care for their body.

My signs:

• Watery blood at the end of my cycle. For me, this started a few years ago. I figured it was because I was perimenopausal. I had no clue this was a sign of an issue.
• A dramatic increase in monthly bleeding, in both the amount of blood and number of days. I had always had a rather light cycle so this one was obvious to me. This started five months ago. I was on the road for work. I was bleeding a lot. I knew I was becoming anemic from the blood loss. I spoke with my older sister to see if she could give me any insight into the possibility of this being a part of perimenopause. I did the self-remedy of taking iron.
• Bruising. This one freaked me out. I developed a large black bruise on my tummy. I knew I had not been injured so that was the last sign I could not ignore. I had other little weird bruises on my body too, like on the top of my wrist.

For women who are past menopause, I understand the number one sign of uterine cancer is that they begin to bleed, long after they had originally stopped having their monthly cycle.

I also learned doctors have a good reason to always ask you about family history when it comes to cancer. (Duh! I just never thought to ask why they always ask.)

If you have had close family members who had cancer (especially when they were young) you might want to request a genetic screening. This way you have some understanding of your risks and can be more proactive in your wellness. If you come up positive it means doctors will do actual cancer screenings on your body at a younger age and perhaps with more frequency.

My family history is a little mysterious. My mom died young. Most of the rest of my family is either scattered to the winds or so horribly repressed that they like to pretend they don’t have a body, much less illness, much less share their experience around illness.

My siblings are the exception. We talk. As much as it sucked to tell them there is a genetic issue in our bloodline, it also felt good to give them the information they may need to care for themselves.

So don’t be an ass. Live long and do good. Listen to your body. Talk to your family. Ask your doctor questions. Get screenings when possible.

I was never scared of natural menopause. I embraced the idea. I trusted my body would do what it needed to do to care for me. I sought out the nuggets of truth that older women would share with me about the experienced. I dismissed the sorry ideas that it was bad or changes a woman’s value.

Now that I face abrupt surgical menopause I feel ripped off. I wish I could experience the slow roll into this life cycle. But it was that or allow my body to die, so I am coming to terms with it. This surgery and experience will be powerful. The changes are a part of my extension of life. It means more for me, not less. And with that, I have begun to write…

THE NEW MENOPAUSE MANIFESTO

Don’t listen to old myths about how the body changes with menopause. I am here to tell you the truth.

The truth is you become more beautiful.

You become stronger. As strong as you wish to be.

You become a better listener.

Your brain actually grows 2.267 inches in diameter. It expands to make room for everything you have learned so far and everything you have yet to learn. (Need proof, menopausal individuals use more lube, that’s just fucking smart for anyone of any age.)

You grow big, golden balls! Nads that make weak individuals fear you and strong individuals desire you.

Fuck hot flashes. The truth is that you get hot. In every way. Sometimes your skin actually sizzles and you resonate warmth to those around you.

Plants and animals grow more fond of you.

Everything you cook tastes better.

Finally, I am not sure I am supposed to share this, but the government issues you a secret license to “dispose of” both pedophiles and those who mistreat animals.

This is what really happens during menopause.

I am still waiting for my surgery.

In the meantime, I do art. I use these beautiful markers that have tips like paintbrushes. I have two crochet projects. I catch up on TV show in chunks. Thankfully my husband has a real knack for knowing when I fell asleep during any given episode of any given show. The next night he will pick it back up where I left off. May sound simple, but you have no idea how awesome that is! I never lose a storyline. It’s good for my brain.

In other news, I have a million tests and appointments this week. My job has been so cool about letting me bank my hours and use my days to get to these appointments cared for. I’ll be getting a CT scan of my pelvis, a mammogram, blood work, urology consultation, medical clearance for surgery, and finally, I developed a swollen lymph node this weekend so get to see if that is something horrible or maybe just an infection from the last surgery. WTF? This little body is in peril.

Last week I got to review my pathology and learned I have a genetic syndrome that makes me 80% more likely to have pelvic cancer. Oddly this made me feel better. I was sort of kicking myself about because I was thinking perhaps I did not care for myself well or some such shit. (I know, it’s all bologna. The conversations we have in our head are not always logical.)

I have my brainiac sister doing research on what I can do to better care for myself after the surgical menopause comes on. It’s a little scary. Nature would have allowed my body to go through menopausal stages when the time was right. I mourn the loss of that natural process. I seek to just do the best I can to take good care of myself. Without the option of hormone replacement therapy, my options will become pure holistic means– like exercise, food, and herbs I think. My sister is the most intelligent researcher in my family so having her help is a blessing.

I am also having all sorts of normal but difficult feelings about sex. I have the most amazing partner and the best sex of my life with him. I know I am lucky to have this kind of relationship. We are brutally honest with each other. He lives with chronic pain so our sex is this amazing combination of rough and compassionate. Every time we have sex I have thoughts on how this may be the last time sex will feel like this. My body is going to change and I fear the unknown. I try to recognize these thoughts, acknowledge them, and then shake them off. It’s all speculation and speculation is a horrible waste of my mind right now.

Due to the never-ending wait, It looks like I will have one last cycle before I lose my uterus. I’m very private. It’s awkward writing about it but I feel like I want to tell you everything. I want future and past survivors to know the truth about uterine cancer.

When I was younger I had true hate for my cycle. It interrupted “my life.” The pain, the products, the expense. In my early 20s I read a book called Cunt: A Declaration of Independence by Inga Mucio.  While I did not chime with everything the author had to say, there were some lovely messages about the female body and its cycles that really resonated with me.

Loving, knowing and respecting our bodies is a powerful and invincible act of rebellion. -Inga Mucio

I grew to appreciate my cycle and listen to my body. I became more kind to myself. (Every woman deserves to have that kind of love and care inside herself and for herself.) I grew to understand that my cycle was not interrupting my life, it was simply part of my life. Making peace with my body made my cycle much easier. I had less pain and brighter days.

(Photo of my inner left arm, with the words “Force of Nature” written in script.)

Gah. I’m having hard days. Days so full of stress that my body hurts. My muscles hurt. My brain is tired. I get up well before dawn and crash out early in the evening. I manage to keep my spirits up most of the time, but then I have these moments where I will swirl away with thoughts and fears.

I am trying to perfect the art of pulling my mind back to the positive. I am outlining lots of “happy places” I can take myself to when my thoughts run away. I can go to a petting farm, to the cabin where we honeymooned… I have yet to be able to take myself to any of these places when I am in a scared state, but at least I know where I am supposed to go. That’s a start.

The appointment with my surgeon was hard. I like her. She’s tough like me. I trust her.

I’ll be having a radical hysterectomy. (It’s uterine cancer.) I wanted to keep my ovaries so I could maintain some hormonal balance, but it’s too risky that they too will bring more cancer if not removed. This means I will experience abrupt surgical menopause. I will not be able to treat that with hormones as hormone replacement will make me vulnerable to cancer in the future. They will take some lymph nodes too.

She has explained to me that the birth defects will make my surgery much more complicated. I had my ureter tubes (the ones that go from my kidneys to my bladder) surgically repositioned when I was a child. There is scar tissue from past surgeries. They don’t know where my ureters sit now. This means I need a CT scan to find them. Then we will need a urologist on hand during the surgery in case my bladder has adhered to my uterus or some other issues arise. Plus they will drive tubes up my urethra, through my bladder, and into the ureter tubes so they have a lower chance of damaging them during surgery. It will be a 4-5 hour surgery. Once they have removed all of these parts they can assess my cancer and tell me what stage it is. That will determine if I need radiation.

The whole time the doctor explained this I was choking back vomit. I have so much residual trauma from those past surgeries that I get nauseated and freaked out.

Beyond the actual surgery, I worry about other things… like what impact this will have on my job, my ability to work, and my ability to care for my family. I am reading stories from other survivors to try to figure out how long it takes to heal from this surgery.

I’d be lost without my husband. He’s a rock through all of this. He comes to every appointment, helps me take notes, he stays positive and encourages my intense practices of self-care. I have lots of love and amazing emails and messages from friends that I need to respond to… forgive me if I am a little slow right now. I am a bit like a cat when it comes to being unwell. I want to hide under a car, rather than be loved. It’s horrible I know. It’s also why I am writing here… I am trying to let you in.

I continue my yoga practice. I play games. We built a little cart full of things to do when I am feeling bad. It has lots of art supplies and comfort things like my heating pad.

I don’t want advice on cancer or herbal remedies right now but if there is something you think should go in my cart, please let me know. Tell me about your favorite video games for iPads, good books you are reading, and art projects. Giving me advice on how to stay distracted and comfortable are very welcome.

Last week I publicly shared my cancer diagnosis. That was scary as fuck.

Since then my husband and I went to a follow-up appointment with my first surgeon. He set us up with the next surgeon. She is supposed to be good, uses robotics and is as noninvasive as possible. I’m happy to hear my cancer specialist is a female. Studies show patients who are cared for by a female surgeon leave the hospital sooner and live longer. They are not sure if that is because female surgeons are better or if healthier patients choose female doctors. It’s kind of a chick/egg situation. But fuck it, I am hedging all bets.

Now we wait for that consultation and then they will schedule the surgery. There is a lot of hurry up and wait. The prognosis is good. The cancer looks contained. They will know for sure once they remove some parts of me that I can live without and some lymph nodes. They will look at those bits and be able to give us a stage and let us know if radiation is needed. The waiting sucks tho!

My husband’s mum is gonna come stay with us while we go through this. So if you are the praying type, we just pray that the surgery will care for the issue and then it’s all blue skies and cupcakes from there on.

In the meantime, life goes on. I did the laundry yesterday. Groceries will happen today. We will stop at this pond on the way and feed this pack of birds I have gotten to know. They don’t like healthy stuff, like oats and seeds so I have given in and feed them Cheerios.

It’s not all beautiful tho, for sure. Yesterday the stress became so unbearable that all of my muscles from my hips to my knees were seizing up. I had to lay around with a heating pad for a while and then stretch them out. It felt like I had the flu. At the end of the day, I did some yoga. I am going to do yoga every day, see if I can cure some of the stress.

Beyond that, I have been reading, writing here, and managed to make it work every day. Work is a good distraction. All the love, videos, and photos of cute animals my friends have been sending on twitter and facebook are also helping. Thanks, my friends.

(Photo of my feet in my Fight Like a Girl socks, next to my alley cat who has gotten real soft from living indoors with me.)

I can’t tell you much about Jo. She was a Holocaust survivor, having been freed from Auschwitz concentration camp in her early teens. She couch-surfed through Europe, hopped a boat to America, and eventually landed with her extended family in New Jersey.

When I met her she was in her 80s. She was retired and had developed a passion for photography. She wanted to take my picture. I let her.

We developed a friendship. We would talk about art, drink tea, and find good food together. Every once in a while I would see a little bit of her pain as a survivor. Having come from a rough place myself, I appreciated it when she would be vulnerable enough to allow me to see it.

One day I arrived at her house to find she was wearing her camera strap with her wrist tucked in, like a sling. I asked her why.

She explained that she was suffering from a shoulder injury.

I asked her if she had seen a doctor.

She had.

She explained that they wanted to do surgery but she was not going to do it. She did not want to spend the estimated 5 days in the hospital.

I totally understood. When you have experienced institutional trauma as she had, being confined and not having control of your moments and days can be unbearable. It’s panic-inducing.

By this point in my life, I had been trained as a patient advocate. I had been spending days and nights in the emergency room with domestic violence and sexual assault survivors. It was my job to sit with a patient, help them understand their medical and legal rights. It was my job to give back some of the power that had stripped away from them by trauma.

In an effort to encourage Jo to care for herself I offered to go with her to the hospital. I offered to sit with her, by her bed, 24 hours a day, for all the days she may need to stay. She declined my offer.
I respected that her body belonged to her. I reinforced that fact that if she ever changed her mind, I would be there. I was ready to care for her.

When I left Jo’s home that day I had this overwhelming sense that if I could not care for this survivor, then perhaps I should learn from her. I made a promise to myself that if ever I was in need of medical care I would not allow my past trauma and pain inhibit me from seeking that care and submitting to the treatment that would give me the highest quality of life. As a form of revenge against the world and all the pain it has caused Jo, I would work to only take better care of my body.

Today I give thanks to Jo. She taught me how to be stronger and how to take better care of myself. When my body began to bleed and bruise it was my memories of Jo that made it possible for me to push past the tears and fear and achieve my cancer diagnosis. I will draw on this strength as I move through treatment.