The Confusing Often Scary World of Medicine and Bad Things

Recently after 18 years in my current job I decided to take a new job at new company all the way across the country. I moved from Massachusetts to Portland, OR. Looking back over these past nine weeks I have learned a lot about myself. I now know I was very “star struck” when I took this job. Definitely a, wow they want me, moment and I failed to ask enough questions or the right questions for fear that this opportunity would be taken away. I underestimated how hard this move was going to be on myself and on the life I had built back home. I did not even imagine that after my cancer battle the stress this is putting on my body, mind and spirit would be this overwhelming. Physically I am exhausted, mentally I am tired and career wise I am more challenged and stretched than ever. My life is now work and sleep. Email consumes my off work time and I find myself nose in laptop until bed. 

One reason why I think I did not question my ability to make this move was that I had moved several times before for work and it always worked out. I also never faced the fact that I had cancer. Instead I did what I do and I plowed through to reach the finish line. I grabbed my metal and my water and I moved on to the thoughts of my next great race. 

The one thing having cancer did teach me was to take care of myself. I am doing somewhat of a better job of this lately. Still have a ways to go and I am trying harder and harder each week. One thing I am being diligent about is my three month checkups. I have read, researched and studied and I know ovarian cancer has a very high rate of return. So I found a new oncologist and made my nine month post chemo appointment.
For the most part everything went well. My cancer protein blood test, CA125, was negative again. Hoorah! The dr was very smart and very sweet. He took my hand at the end of the appointment and told me I was doing a good job and that he would “take care of me.” I almost cried because I felt he was being sincere. The funny thing about the appointment was that he questioned some things that were done a Dana Farber. Believe me, he gave credit to their amazing work but asked why we did six rounds of chemo versus three and reevaluate, Why did they not do a test on my tumor that looks for a chemical build up before jumping to Lynch Syndrome. Why did they see the lesions on my spine and not move forward with the MRI when I am saying I have chronic pain. He disagrees that my leg, hip and back pain are post chemo related. So he scheduled an MRI for this Friday to be sure the lesions on my spine are not tumors. He is trying to get my tumor samples to test for the chemical build up on my promoter cells. He is working to help me minimize my surgical menopause symptoms so I can sleep without using hormones to do it. 

I go into this much detail because I consider myself to be a smart women who has been in and out of hospitals for most of my life. Dana Farber is world class at treating and beating cancer and I owe them my life. I begin to believe though that each doctor and each hospital has guidance to treat but that not one of them does it the same. Each feels one belief or scientific discovery is deeper or better than the next. It comes down to three versus six and MRI’s versus chest xrays but really it is my life. It is my life that you are trying to save and I want you to be the best. I am not alone in this feeling. Everyone feels this way. Medicine though is scary and confusing and if you are not dgging and reading then you might not get the best care. You might get what your doctor believes is the best care and that is too scary to bet your life on. 

This move is hard and looking back I wished I had not done it. Maybe that will chnage or maybe not. I am giving myself a year to figure it out. I firmly believe that eveything we do in life teaches us something. I know that if I had not had a new oncologist that I would not have relized how much I need to be my own advocate in the confusing often scary world of medicine and other bad things. 

I am a Runner

I’m starting to run again tomorrow. I stopped running last year because physically I just could not do it. I’ve read about people who run during chemo and I applaud them. Working full time was tough enough for me. I hated giving it up. It really is what helps me de stress and clear my head at the end of my day. It is my outlet. I started again once chemo was over but it was never for long. Fatigue, long commutes and crazy workdays led me to not run more often than run. 

So I will start again tomorrow. I start in a new city. I recently took a great job in the Pacific Northwest. Packed my bags and life and traveled all the way across the country to Portland, OR. Still learning my way but it is the healthiest city I’ve ever lived in so I need to get onboard. I plan to run everyday. Miles or time don’t matter to me right now. Just need to feel my lungs expand and my feet hit the pavement. 

I am also hoping it helps me get rid of the pain I am still dealing with nine months post chemo. I never felt my age before cancer. There are days now I feel like I’m in my 80’s. I have pain in the soles of my feet and right hip pain. If I sit for even a car ride I have to walk bent over for a few steps. This is the result of a chemo drug called Taxol. My only complaint after each chemo session was that I had horrible leg pain. Test after test until I was told that this was “my chemo gift.” So I’ve decided to give this gift back. 

Here’s to adding some distance to my Nike+ app and reclaiming my life along with it.

Rape

I am sure after reading multiple posts about rape that you might be, “well here is another one.” I am so mad about the recent things I am reading on blogs and Twitter that I need an outlet. So bear with me.

I will caveat the post by saying I am writing about women who are raped. I know men and boys are raped as well but I dont feel educated enough to write from their perspective. I am a woman so I will stick to what I know in no disrespect for the suffering of men and boys who endure this terrible fate.

As a women I must always remain on guard and vigilant. This is what I am told and it is only reinforced by the recent Stanford rape case. As I read the victim’s letter I was moved to tears. In the blink of an eye her life was made a nightare and one she will fight to regain for the rest of it. With good therapy maybe she will be able to walk alone in a park or through a parking garage without her heart punding, palms sweaty, feeling like she wants to just run. Maybe she will trust and love again in her life. Hopefully she is not online reading what others think SHE should have done to not get raped. Sad to think that part of raising a daughter is teaching HER how not to be raped. Maybe I will write a childrens book called, Dont Rape Me and Other Things Young Girls Should Know.  If you think that is ridiculous go online right now and read comments from both men and women who think it’s needed.

  • Rape 1 – Woman raped while drinking
  • Response 1 – She should have drank less so she would not have allowed herself to be in that position
  • Rape 2 – Woman not drunk, raped while walking home
  • Response 2 – She should have kown better than to be walking alone or in that neighborhood
  • Rape 3 – Woman raped while out with friends at a club
  • Response 3 – She should have dressed more appropriatly. She was showing a lot of skin. 
  • Rape 4 – Woman raped in her home
  • Response 4 – Did she have her door locked? Why was she so trusting and open her door

We live in a victim blaming society and I have had enough. I am a grown woman and I should be able to go to a park or walk in a parking garage without holding my keys like a weapon. I should not be nervous when the cable guy comes to install my new system. I should not have to call 911 if I get pulled over at night to verify the man pulling me over is a cop and even if so, worry that he will assault me. I should be able to go to a bar and have drinks with friends without going to the bathroom or to our cars as a group to be sure we all get home safe. I should not have to make myself familiar with the emergency call boxes on my college campus so when I walk home from a late class I can call for help. I should not have to wear rape whistles or carry pepper spray when I take the dog out after dark. In the end, after all of my guard and vigilance, if I have a moment where I have one more drink, take the quick route home, trust a stranger and I am raped, I will be blamed. 

As a man I would be outraged. What this says about you is that you are uncontrollable, sexual beings with no self control or knowledge of right from wrong. You can’t help but see clevage or thighs and have to have it. You will do anything and take anything or anyone to be fulfilled. You are not intellignet, loving beings who nurture and protect. You are wild animals that are only held at bay by guarded, vigilant women. This is what it says every time you tell the VICTIM she should have known, done or been better. If this outrages you, change the dialogue. Stop the conversation mid stream and proclaim the only person to blame for rape, IS THE RAPIST.

Help give women and girls their lives back. Help us live a little less concerned that it’s not if we are assaulted in our lives, but when.

Cancerversary

April 15th is my cancerversary. It has been one year since I was diagnosed with ovarian and endometrial cancer. This is not the day of my last chemo although I will celebrate that too. This is the one year mark from when I found out I had cancer. So why celebrate this day? Why not let it pass quietly considering it flipped my life upside down. 

The simple answer is because I AM ALIVE. I am not celebrating the fact that my dr sat me down, looked me in the eyes and said, “you have cancer.” I am not celebrating the days that followed where I felt lost, confused and terrified. The nights where I could not sleep because I could not get death off my mind, wont be celebrated either. The celebration is because 365 days after being told that I had not one but two primary cancers and that I have Lynch Syndrome which makes me cancer prone, I am alive. ALIVE.

Not just alive but living. In this year I have been through a tremendous amount of crappy stuff. As vain as it sounds losing my hair, eyebrows and eyelashes is still top of that crappy list. I have also done some amazing things. I kayaked for days post chemo. No one had to wait for me. I kept up. No help needed even though my white blood count was in the toilet. I saw amazing sunsets and beautiful sunrises. Spent nights around a fire pit with great friends who could care less that I was bald and rocking it. My sister and I grew closer than ever before and shared parts of ourselves we probably never would had it not been for cancer. I traveled to the Philippines and spent 20 hours on a plane. Something that terrified me before this trip. I saw amazing landscapes and met wonderful people. Ive found my love of running again and completed two 5k’s this month alone with better times than when I ran consistently. I’m working on finding out where I want to live and what I want to do because what I am doing is life draining to say the least. I still have work to do. I have to move to a plant based diet. I need to workout more and drink less. I need to make caring for myself a priority. Tough stuff. The good news is that I am ALIVE to do it. 

One long, horrible, stressful, painful, anxiety ridden year later, I am here.  On 4/22 I have my second three month scan. They will do some blood work and compare this scan to the last. I had some spots on my last scan that hopefully have not grown or changed. This is my life for the next five years. Blood work and scans. Totally fine with me. I am staying right here to get it all done. 

O V A R I A N

All the way to Dana Farber my sister and I laughed.  We talked about our lives and the crazy things we think. We fought traffic and jumped the light when the bell at the mosque across the street started to chime at noon.  Scared the living daylights out of her because she never realized there was a mosque there. We laughed.  It was the first time in close to a year that the lab was not behind. I saw all my doctors on time.  The day was going good. As good as it can at Dana Farber. Nothing made us cry at least. Small blessings.

We headed to the cafeteria shortly after noon.  If you ever have to go to Dana Farber, and I hope you don’t, but if you do NEVER GO TO THE CAFETERIA AT LUNCH.  You will never find a place to sit.  We made this mistake and were wandering around the small seating area looking for a place. A woman sitting alone offered to have us sit with her. I did not want to but my sister just sat right down and started talking.  I looked at my food and tried to eat. It was nice of the woman dont get me wrong. I just did not want to make conversation with a stranger while trying to eat. My sister, however, had no issue. As she talked to the woman I knew it was coming.  The inevitable question that women with the same haircut at Dana Farber ask each other. So what kind of cancer do you have? Lovely question isn’t it.  Like if we both say the same thing we can high five and do the secret handshake.

I have said many times, one of the things I hate most about cancer is that it is the most private thing you are dealing with publicly. Most people recognize the baldness and dark circles under your eyes and know you have cancer. It’s not being dramatic. When I first lost my hair I was very self conscious. I avoided all eye contact. I never looked in a mirror at a store or the gym. I was not strong enough then to say screw it. That day came but it took some time. Plus, besides being self conscious I hated “the look.” The look you get from other people when they feel bad for you with just their eyes. They are apologizing in their head and they just give this sad head shaking kind of look that sucks the last breath out of your chest. I hate that look. I’ve learned that when I see people who have cancer to smile. Smile big. It helps. When people smiled at me I felt normal. I felt like I had a full head of hair and I was just going about my day. I did not feel like the lone bald one. So take my advice and if you see someone with cancer, smile.

So there we sat eating a crappy calzone talking about where we were from. Did we have a long drive. Do I like my doctor. Eating and enjoying each other’s company. She told me that she has been coming to Dana Farber for over 15 years.She has been fighting lymphoma since 2000. I smiled and told her I felt for her. I understood the drive and the toll all the visits take. I sympathized with her that 15 years was a very long time and congratulated her on her strength and courage for the fight. Her attention then turned to me and I knew she was going to ask and she did, “What kind of cancer do you have.” I swallowed my bite of calzone and told her I had endometrial and ovarian. “Oh I’m sorry” was her response and then came the look. “Ovarian cancer is very hard.” Then poof she left.

I was sitting there, no longer hungry, feeling defeated. This woman who has been dealing with cancer for over 15 years feels bad for me.  She gave me that look that says poor thing. Like regardless of her own lymphoma, I have been given a death sentence and I am just serving out my time. Now I’m sure she was the nicest person who has no idea she left me lifeless. She would never know that her comment has stuck with me for over two weeks now. How dare she get in my head. How dare I let her.  Women survive ovarian cancer.  It is possible. More women who have survived need to talk about it because everyone who hears the word OVARIAN paired with cancer, thinks death.

I’m not dying and I am tired of thinking that its coming for me. I have to prove I’m not dying every three months for the next three years then every six months for the following two. So I’m going to get her look out of my head and try living.

Leaving on a Jet Plane

Leaving on a Jet Plane

On Tuesday I will get to travel to a part of the country I never dreamed of visiting. I am going for a short time to bring my youngest to college. To say I am excited for her is an understatement. I have watched her nervously pack and answer the same question over and over again by friends and family. “Why Montana?” To be honest I don’t even know the real answer to that question. I know that she went to college last year and hated it. To be fair she went to a technical college because, since she was small, she wanted to be a chef. It was too small a place, the path to a career was too laid out, planned and it stifled her nature. I was not surprised when she came home. I was not disappointed either. I know an education is valuable and gives people a step up. I also know that deciding your life’s path at 18 is really a lot to ask. 

I have known ever since she was little that she would be the one who wandered.  She is quiet and shy but never stops. She goes from dusk to dawn. When she is not on the go I hear, “I’m bored” over and over. When I started running, she ran with me. When I moved for work three times in her high school career, she was right beside me packing. She would make new friends and start again in a new place. She never complained.  She put herself into each place she went and she succeeded. I told my parents at one point that she could dance in a fire. Change should have been her middle name.

A few years ago I bought her a camera. She began to express herself through her photos. Each one better than the one before. This Christmas I bought her a better camera. A Cannon T5 Rebel. I joked when I gave it to her that she was going to have to start selling her pictures to pay for college. So I don’t know why Montana. I don’t know why she is taking herself thousands of miles away to get her degree. I don’t know why she chose to go somewhere so cold. I know that she will love it. I will see one of the most beautiful places on earth with her on Tuesday and then through her eyes and photos after I leave. I know that she might find it hard at first being the new kid at the new place but before I leave I will remind her that she has done it four times before. I will also remind her that each time she succeeded.

Bon Voyage 

I am a Lover

I am a Lover

Although I have had to fight a lot in my life, at the core of my being, I am a lover. I love, love and all that goes with it. Grand gestures of friend filled ceremonies, flowers to celebrate special occassions. Hugs and kisses. Passion filled nights when the sweat and steam from two lustful people make it impossible to see out the windows. Texts just to say hi and did you make it home safe. The look when you come home after a long, horrible day and the other just knows. Wine poured and take out nights with Netflix. Vacations in paradise with your best friend and a newly released best seller. Endless date nights at the best restaurants the city has to offer. Cuddled naked under piles of soft fluffy blankets on Sunday, reading the paper, drinking hot coffee and eating freshly baked croissants. Gifts, just because. 

At 20 when I got married this is what I imagined my marriage was going to be. I was 20 for goodness sake. I lived my life pretening to be Cinderella and Snow White and when things started to fall apart shortly after my first semester at college, I found Prince Charming and settled down. My prince, was older and smart. He was handsome and fun. Rugged and outgoing. Employed and stable. Everything my 20 year old self could hope for in a man. We married and in a span of 2.6 years had two daughters. I was 23. A mom, a wife, a full time employee with a two bedroom walk up. Rent and untilities to pay. Groceries to buy, car insurance to pay, gas to get to and from sitters so I could go to work. Mountains of laundry I never seemed to finish. Floors that were always dirty and sticky from two beautiful but very messy toddlers. Cheerios stuck in couch cushions and sippy cups, binkies, blankies and stuffies all over, all the time. Time passed and I did not even get the chance to see it go by. My prince and I spent our days working opposite shifts to reduce the babysitting needed. Long overtime hours to help keep the walk up. Arguments over who did what in the house and who did more every day. Petty young arguments that are done to make one feel superior and the other feel small. Time spent on the couch was spent sleeping while the beautiful ones slept. As time went by I began to invest time in my career and it took off. We moved several times for my next step up. My prince began to experience bouts of extreme depression followed by spending phases and days locking himself away to work on his favorite hobby, painting. He worked less and I worked more. All the days of who does more coming to a head. Finally it stopped and I took the beautiful ones and went home. Not sure how I came to that decison but I did it to save us all. We were self destructing and I did not want our children to witness the demise of love and two people along with it. 

I am 43 now. Ive been single going on 9 years. I am still a great lover of love. I still believe that two people can come together for better or worse, richer or poorer, in sickness and in health, until death do us part regardless of what the statistics say. Regardless of my past exoerience. I understand now that its never about who does more. That is about doing for someone and someone doing for you or you both doing together because that is what love is. Moments when one of you will give and one of you will take because eventually the tide changes and the opposite comes to pass. I know now that it is about building someone up to be the best they can versus tearing them down because. you feel they are not enough. It might be prince charming who sweeps you off your feet and makes your heart flutter or it might be the one who calls to see how your day is going and can talk to you about anything on end. I know and almost understand love. I look forward to one day being married and again being someones wife. I look forward to coming home. To knowing and making someone happy because after 43 years, I know its possible and I know I can, love.

I love this picture. This is my sister and I. It is a coming together of two individual pictures to create one very cool picture. My sister is the one with the lighter color hair and she is smiling. I am the one with the hoop earring, not smiling. She texted me this picture right after my second round of chemo. She had taken the pictures that day in the Dana Farber atrium. We had stopped in for a few minutes before my infusion. It was a warm, quiet place with an incredible view of Boston. 

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I would never have made it through this past year without her. She was with me the day I found out I had cancer. She drove me to every infusion through Boston city traffic, even though she has a fear of highway driving. She was there for every surgery and doctor appointment. She listened and asked questions when I was too afraid or overwhelmed to get the words out of my mouth. A hairdresser by trade, she was the one I called to shave my head the day it kept falling out in big pieces. There I was sitting on a kitchen chair while she carefully shaved every strand. Tears rolling down my face. After it was done she took me to the bathroom mirror. I was frozen. Staring in the mirror at someone I did not recognize. She leaned in close and whispered, “You’re beautiful.” I turned around only to see her making faces at me wearing the hats and scarves I had brought with me. Days later I went back to her house and we sat and watched YouTube video tutorials on how to tie a head scarf. I am happy to report that I am now a pro. I am even happier to report that my hair is growing back in now and I no longer wear them.

  

She was my rock. Our drives to Boston became therapy sessions for us both. I would talk about everything but cancer and she would talk about how I was avoiding my illness and pretending that I was not sick. We sat together for over six hours on infusion day. Talking, laughing, reading inappropriate jokes and I am sure, annoying everyone else getting chemo. We cried together the day we saw a husband hold up his wife in the waiting room chair. She was not going to make it another week but there he sat with her frail body in his arms. It was too much for us both. She called or texted me every morning and every night. She urged me to rest on days when she knew my two hour commute was going to be too much. She was my Dr. Google when I would get results in my patient portal before the doctor had called with the results. She celebrated with me when we finished round six and finished chemo all together.

  

I am more than aware of what cancer took from me. It took my 2015. It took my hair. It took my piece of mind. It took away my favorite hobby for now. I also know that it created a coming together of two individual people to create a very cool thing. Love. I know all of what we went through took its toll on my sister too. I know she had days when her thoughts brought her to a very dark place. I could see that her family life was being turned upside down by all that she was doing for me.  Sitting with her at chemo one day I asked her why she did it.  Why did she jump right in and do all I needed but would never have asked her to do. Her answer, “because I’m your sister.” 

Best Me

I decided in 2016 to be the best me. No time better than the present to rebuild this run down house. It is run down for sure. Since being diagosed with Ovarian cancer, Endometrial cancer and Lynch Syndrom in March of 2015, there has been an all out assault on this house. In nine months I have put this house through some of the hardest things I hope to ever face in my lifetime. I’ve done biopsies, ultrasounds, chest xrays, echocardiograms, two port surgeries, 6 rounds of chemo, a hysteroctomy, colonoscopy, endoscopy, and more than ten blood tests. I’ve had mouth sores and chemo leg pain. Days when I was so tired I did not want to leave my bed. Nights I could not sleep. Hot flashes because of early onset surgical menopause and steroid weight gain. Lost my hair, eyebrows and eyelashes, I’m still dealing with steroid myopathy and elevated CPK’s that make my shoulders and hips hurt to the point where I am woken up in the middle of the night. All of this done in nine months. All of this done to save my life. I was not sick when I was diagnosed. I had no idea I was sick. I did not know my house was crumbling at its foundation. So I decide to be the best me in 2016. To make my well being, health and wellness a priority. To take the time to run and see the beautiful trails that my feet will take me. To breath in deep gratitude and exhale anything that does not serve me. Somehow I had the strength to hold up my run down house by the studs. Now it’s time to rebuild the home of my dreams. It’s the least I can do

New Years Eve

New Year’s Eve sitting on my couch in my pj’s, wrapped up in a soft blue blanket, watching Ryan Seacrest and Jenny McCarthy “rock in” 2016. Duke is beside me with his head on my lap. I pet him but he really does not care because he is sound asleep, snoring loudly. He must be wondering why the hell I am still up. As the ball begins to drop, I start to cry. One minute left in 2015. One minute left in the toughest year of my life. One minute left to reflect on all I have gone through in this fight against cancer. One minute left to be disappointed that this was not the year I thought it would be when I “rocked in” 2015. One minute left to be sad that my body has changed, my hair is so short, my strength is less and that the freedom of thought I had before cancer is gone from me. The ball continues to drop. 20, 19, 18, I continue to cry. The toughest year of my life repeating over and over in my head. 10, 9, 8. Tears flowing down my face into my hands. 6, 5, 4, Sitting staring at the ball. All shiny and new. All glowing with one million people happily waiting below while I sit on my couch, wrapped in a blue blanket in tears. 3, 2, 1, Happy New Year. It’s done. Done and I head to bed.