Saturday, December 3, 2011

I'm Only Human After All

When you have had cancer it is difficult to stop thinking about it. Despite your best efforts to convince yourself that it doesn’t help or change anything it is impossible to control it. Before I finish catching this blog up to date I want to share a journal entry that I wrote back in March, three weeks before I had found out my cancer had returned.  I want to share this because it is raw and real. I think it is hard to know how to support your loved ones once their cancer treatment is over. I never expected to face a depression after I had supposedly beaten the cancer. I want any one reading this to know about the silent pain after cancer so they can know they are not alone. Also so they can help loved ones who may be struggling. I had amazing family support. I would say everyone in my circle was more than supportive and understanding so in my case it was a matter of needing to admit that I was depressed, forgiving myself for that weakness, and then asking for professional help. I was sitting in my English class finding it especially difficult to concentrate that day. This is what I wrote.
It’s Hot. I kick off the blankets which makes my poor husband stir. I am always hot at night now, sticky and sweating. “Stupid hormone treatments. Stupid cancer.” Hot flashes are a Bitch. When you are sitting in public, red hot and melting no one actually thinks that this 29 year old woman might be having a hot flash. Hot flashes are just one of the many leftover reminders of my cancer.
From the start of my diagnosis I have had a gut feeling that my cancer would come back. Maybe it was because I lost a good friend to Breast cancer one month after my diagnosis.(There is a side entry about my friend but I will leave that for another day.) But whatever the reason I have treated this feeling as a mental weakness as if I am letting the cancer kill me because I am not strong enough to rise above this belief and fight. But I did fight. I fought with everything I had. On the surface I appeared to be a heroine.  I tried not to complain, I continued to work. I told everyone I was going to kick cancer’s ass. And I did. Now I look at my mosaic of scars as I stand naked in front of the mirror, everyday a reminder that cancer took something away from me.
 On April 15th it will be two years. To you it is the day you turn in your taxes. To me it is the day I was told I was cancer free. That is what they tell you anyway. But I swear I can feel it still inside me. Microscopic cells vacationing in other parts of my body just waiting for me to relax and finally believe that I won, to then replicate and invade my happiness.
My cancer was facilitated by a gene mutation. This means there is a 50% chance that I passed this gene mutation on to my daughter. My mom had cancer, my sister had cancer and I had cancer. This causes tremendous guilt knowing that there is a 50% chance that I gave my daughter a cancer causing gene.
There is a depression that has clouded my existence since my cancer free day. In many ways I have moved on with my life. I went back to school to further my education. I want to show my daughter that you have to work hard for the things we want. I continue to socialize to the same degree I did before, although I feel slightly less connected than I did before. Not because they have changed but because I have changed. I try to be a good wife, a good mother, and a good friend. Yet, I continue to believe that my cancer will come back. What good does this serve me? Regardless of the outcome I can’t change it. So why am I wasting my energy worrying about it? I think that maybe this belief is a self protective feeling. If I continue to believe that my cancer will come back I might not be as devastated if it actually does come back.  It is as if I am actually scared to be healthy. Like if I finally relax and let my guard down, that is when everything will come crashing down. But this continued fear means that I am not fully living my life. My daughter and my husband deserve more than this! After all, they fought this battle with me. They are the hero’s in my story. When you talk about love stories, mine is one that would go down in the history books. Pure, unfaltering, crazy, mad love. This doesn’t mean that we are blind to each other’s short comings, but we have a connection that is unbreakable and beautiful and our amazing daughter only made that love blossom and grow stronger. I need to live for them. I need to let go of this fear and this pain for us.
Class ended and I didn’t ever write any more to this entry. But being able to write out these feelings, feelings that I wanted to deny was powerful for me. I hope to learn how to honor my emotions without ignoring them or drowning in them. I think cancer is a very traumatic experience but people don’t expect to have to recover from anything but the physical parts of the disease.  We expect people to take time to heal when they experience a violent crime, or the loss of a loved one, any number of hardships that life deals out. I would just like people to know that cancer is difficult to heal from. This doesn’t make you weak, this doesn’t make you abnormal. It makes you human.

Thursday, December 1, 2011

Wishing for Normality

The terror was justified. The scan showed that the cancer had most definitely returned. It was in many bones and one spot showed on my liver. As an act of protocol we did a liver biopsy to make sure it was in fact the same cancer; which of course is exactly what the test showed.  This all came two weeks before finals at school. Up to this point I had maintained a 4.0 and finishing these two weeks meant getting my AS. I couldn’t have been more pissed about the timing but I tried the best I could under the circumstances and managed to keep my 4.0. Once school was done we were back in decisions mode. We always knew at some point that we needed to remove my ovaries but we originally wanted to wait until I was done with my hormone treatments so we could make a less emotionally charged decision as to whether or not we wanted to have one more child first. Now my option was to have them removed or get a shot once a month for the rest of my life to shut them down. The obnoxious result of menopause was the same either way. We opted to have the surgery. That was done in early summer of this year. I also started a hormone treatment that would block all estrogen in my body, in essence trying to starve the cancer of its favorite food.  This showed to be working amazingly well. So I attempted to have a normal summer. This was easier said than done. For one thing through all of this my arthritis was still not being controlled with any of the different medicines we tried but now we were compounding it with the fact that I had zilch in the estrogen department. Estrogen helps coat the joints and many women get arthritis after they hit menopause but it is slow and progressive because menopause is slow and progressive. When you take away a woman’s estrogen over night another type of arthritis can occur which is not controlled with the types of medicines used for my original form of arthritis. But taking away my estrogen meant more than just an increase in arthritis pain; it meant learning how to be patient again. Something I never felt was too hard for me before.  It also messes with your brain. You say stupid things when you would have bit your tongue before. You do stupid things like spraying your aerosol hairspray in the bathroom at the same time your husband is putting in his contacts.  You forget word the second before you are about to say them. You feel more scattered than you have ever felt in your life, like you can’t get organized to save your life. And you become clumsy. I am constantly running into things, dropping things, forgetting things, forgetting conversations. And then there are the hot flashes. I was having them before because of the original hormone treatments that I was on but menopause has kicked them in to high gear. And I am not sure why it is called a hot flash many of mine last hours. It is hard to have a normal summer when you feel more disconnected from yourself than you have ever felt before.  To top it all off the same month we found out my cancer returned one of Chris’ (My Husband) co-workers switch positions and it took them until now to replace her. This has meant that Chris has been working a minimum of 15hrs of overtime per week w/many weeks adding up to much more then that ever since April and is predicted to continue till the beginning of next year when the new replacement should be trained.  Nothing about this year has been normal.

Friday, November 11, 2011

A really long Catch up

Going back to school was beyond gratifying for me. During chemo your brain begins to become clouded. Thinking straight is almost impossible and words just slip your mind the second before you are about to say them, making you feel more than stupid. But as many studies have shown us if you don’t want to lose it you have to use it. This is what school did for me.  In true Megan fashion I jumped  all in. I took as many classes as possible each semester to get my nursing pre reqs done as fast as allowed and got myself on the nursing waiting list. School was actually going great. I found myself with good teachers which gave me the foundation to actually understand the content. I finished my pre reqs and my Associates of Science with straight A’s. Intellectually I felt a gratification that I had not felt in a long time, but all along my health was still a struggle for me. The hormone treatment made my patient less than thin (which is out of character for me) I felt tired all the time, I was experiencing muscle fatigue which no one could explain and my joints began to ache more than they ever had before.  (this begs a side note) I have been fighting unexplained chronic pain my whole adult life. It started with some strange pain in my sternum when I was twenty and within a year or two had progressed to full body pain and fatigue. I was told by my normal doc that it was probably Fibromyalgia. I was told by a rheumatologist that it definitely wasn’t but my blood work also didn’t show any signs of arthritis so perhaps we should try to treat it like fibro. To no avail. I never found relief. I spent years giving up on doctors and then my pain would get worse so I would return dreaming that one might have a new trick up their sleeve. Still to no avail.  My husband and I were married in Oct of 2005 and then in 2007 we planned and got pregnant. Maybe three months in I started to get abdominal pain. It was first thought to be the ligiments that cradle the uterus. But it continued to get worse. The pain increased to the point that I couldn’t always get out of bed on my own. And while on a camping trip to California to hike the red woods I awoke one night with a fever and a pain in my abdomen so bad I felt like something burst. The next morning we headed back to Utah to check into the ER who wouldn’t take me because I was 23 week pregnant and found myself being checked in to the labor and delivery floor. The decision was to remove my appendix. But when they got in there and the problem was not my appendix they look around with a scope and found massive inflammation on the outside of my bowels adhering them to each other. Four different Doctors were brought in to look at it all of whom had never seen anything like it.  They opened me up, shaved down the inflammation and closed me up again. Ten day in the hospital on the labor and delivery floor (because I was 23 weeks pregnant) with nurses that didn’t know how to control the pain of this kind of a Patient. It took ten day for my gut to wake up. Then when I went home I found myself unable to eat virtually anything without experiencing massive pain. I lived on Ensure for three months of my pregnancy just so my sweet baby could get the nutrients she needed. We got high risk pregnancy docs involved as well as a GI doc. And even though my symptoms didn’t fit well he tested my blood for markers of Crohn’s disease.  The test result came back 98% positive that I had Crohn’s. Well that explained the stomach pain, but not the rest of my pain. Makena was born in November and despite such a ruff pregnancy she did everything right. She was beautiful and healthy. I breast fed exclusively in the beginning but I began to struggle to keep up. I couldn’t make enough milk. So I breast fed as much as possible and supplemented w/ formula. At eight months when I returned to work we gave up the breast feeding all together. In Late august of 2008 I was lying in bed when I found the first breast cancer which brings us full circle to where this side note ends. As I found school harder and harder to manage I got palliative care doc involved. She has truly been a God send. It is not like she had some miracle treatment to give me or answer to why I felt like shit, but she never gave up, and she never made me feel like it was in my head like some many other doctors.  We did blood tests (which always looked normal), bone scans (to make sure it wasn’t the cancer coming back) and she sent me to every kind of specialist that could possibly have insight. Finally we went back to the rheumatologist that I had seen 9 years earlier and with the new info of my Crohn’s diagnosis was able to tell me that I have Chron’s related inflammatory arthritis. We are still trying to find the right medicine to help it but after ten years of feeling crazy it feels like perfection to have a Doctor finally justify the pain that so many others had chalked up to depression, or even drug seeking. Well all along I had still been seeing my oncologist. We were to a point of seeing him every 6 months and getting a Zometa infusion, which is actually and osteoporosis medication. Cancer docs use it to strengthen cancer patients bone to make it harder for cancer to grow in the bones.  My first couple treatment caused pretty extreme bone pain but then as the med built up in my system I began to get used to it. Well last April when I had my standard appointment we drew the typical blood work which for us included tumor markers. The tumor Marker’s had been low up to this point.  A day after the Zometa infusion I started to feel like I was getting sick. And then came the worst back ach of my life. My entire skeleton ached but my back felt like it couldn’t hold my weight. I couldn’t twist, bend, cough, without 10 over 10 pain. That Tuesday I found out that my tumor markers were higher than normal and that I was going to need to have a PET/CT scan. It was scheduled for April 19th, I had to be there at 7:30am. The test is long and my joint ached as I lay there, perfectly still. The room is cold, the machine makes strange noises and your mind races. When it was over I asked how long it would take to get the results. The tech said the radiologist would read the test that day but that it might take a couple of days to get the results from my oncologist.  Later that day I looked on line on a website by my insurance company that keeps track of my medical records and the radiologist had already posted the report.  I was terrified to read it.  

Wednesday, May 18, 2011

A new Goal

Chemo, as you can imagine sucks. I was tired, nauseated and sore. Food lost its taste, I remember eating strawberries and I couldn’t even tell that they were sweet. But with each chemo treatment you know you are getting closer to the end and that it is more than worth it. I continued to work through chemo as much as was possible, luckily I had an amazing boss who was understanding and so good to work with me. My husband always came with me to my treatments. We would play Connect Four or Dao, which was of course my idea, who knows why; Maybe because I enjoy loosing ;/ I certainly didn’t have the brain power to win very often. I loved that he was always there with me. A person couldn’t ask for a more amazing partner. Chris and I literally fit together like puzzle pieces. He is the yin to my yang. I could ramble on with all of the cliché metaphors to describe our relationship but the bottom line is we have the kind of love that most people only dream of and what is better than that is we both know how lucky we are to have each other. As we sat through one of my treatments I looked at him and said, “I am going to be a nurse.”  I had thought about being a nurse before, I had been a Nurse assistant (that is actually how my husband and I met, my husband is a nurse) and it is a natural progression to become a nurse, but I never felt like I was science smart. I never thought I could manage that kind of school. Most of my life has been spent on the right side of my brain. My first degree is in fashion. I always thought of myself as an artist. But suddenly it was like a complete shift in my mind. All of the fear I had about getting through school to become a nurse, disappeared. It wasn’t a thought of, ‘Maybe I will be a nurse’ it was, ‘I am going to be a nurse.’ This gave me a new sense of life after cancer. I was going to be a nurse.

Friday, May 13, 2011

You can pretend, but you can't hide

I met my oncologist on Halloween. We spent a couple of hours with him asking every question imaginable. He was amazing and patient. We talked about how chemo has become much more personalized to each patient. He basically said they were going to throw the book at me. The number of lymph nodes involved, my young age, the aggressiveness of my tumor made everyone nervous. But with that said he discussed everything we were going to do to kick ass and said if we followed this aggressive treatment plan he believed my chances of recurrence were about 15%. We showed up late to our Halloween get together.  Halloween (if you don’t know me well) is my absolute favorite holiday.   I had made an adorable duck costume for my daughter but I hadn’t even made a costume for myself. This was the first time in years that I wasn’t going to dress up, but I am happy to say I pulled something together at the last minute. (The Halloween that I don’t at least dress up you will know things aren’t going well.) Chemo Started in November. One week before my daughter’s 1st birthday. My sweet mother had come down to help out. I had planned a dinner party for Makena’s birthday. My mother and I went to Costco to pick up groceries for the party. We were about to check out when my mother realized she had forgotten something. I waited at the front with my daughter in the cart when I started to feel dizzy and nauseous. I started to feel hot and clammy, all the noises around me became distant, and I couldn’t see straight, I felt like my legs were going to buckle beneath me. My mom came back and we went to the checkout line. I could barely hear the checker as I paid my bill. I stood there silent as my mom checked out when I realized this wasn’t getting better and my mom asked me if I was ok. I think I was seconds from passing out when I sat down on Costco’s floor. I started getting my hearing back and began feeling better. But they still made me take a wheel chair out. I was so embarrassed. But it made me realized that all of this crap was real. I had cancer and I was going to have to deal with that.

For those we Love

A few weeks after my surgery I lost a good friend to her battle with Breast Cancer. This beautiful woman, we will call her Lynn, was someone you couldn’t help looking up to.  Someone you loved to be around. And despite the fact that we only saw each other a few times a year I cared deeply about her. But more than just the things that made her wonderful were the things that connected us. We both battled Crohn’s   disease, we both were diagnosed with breast cancer when our daughters were very young, but my favorite connection is that we both love to sew; and our favorite thing to do is sew things for other people. For the sole purpose of the feeling you get when you sew a dress for a little girl and she can’t stop smiling because she feels like a princess. It was these things that made us so similar that made her funeral so difficult to attend. I sat in the church pew with surgery drains still painfully in place. I cried for the loss of a dear friend as well as for the fear of what lay ahead for me. As those closest to Lynn began o tell stories of her life I realized these stories were my stories. It wasn’t just an illusion, my husband felt it too.  At the grave site my father in-law (one of the sweetest men on the face of the earth) hugged me so tight it hurt. I lost it, I had to step away to compose myself. Lynn never complained, at least not in public anyway. I wanted to fight my battle with the courage that she had. As I sit here typing I still try to muster up the strength that she had. I am grateful to have known her and my life was blessed to have her example. May we always remember those who went before us and strive to live in such a way that would make them proud.

Wednesday, May 11, 2011

Decisions, Decisions...

I t is hard to convey, unless you have had a similar experience, what it feels like to be told you have cancer. It is of course terrifying, but there is so much to do and so many decisions to make that you are quickly taken from fear to a place of business like proficiency. Due to my young age and my family history of breast cancer the first decision we made was to get genetic testing. It came back that I had a BRCA2 gene mutation. This led to my second decision which was to have a bilateral mastectomy. Being 27 and having people suggest that you have both of your breast removed is horrifying. And if you have the inclination to get on the internet and look at mastectomy and breast reconstruction results it becomes even more terrifying. Luckily I have an amazing husband who has stood by me through all of life’s challenges, and he was my rock through this one. I made the decision to remove both breasts because I didn’t want to go through this horrendous experience again and my gene mutation made the likelihood of a 2nd breast cancer a real possibility. We met with a plastic surgeon and discussed all of my reconstruction options. I decided to use my own fat from my stomach to reconstruct my breast. This option didn’t use any of my muscles (which is a common reconstructive option) and it was my own fat so if I gained weight than my breasts would too. We couldn’t do this immediately so he coordinated surgery with my mastectomy surgeon and when she was done he placed tissue expanders. These would prepare my skin for the reconstruction surgery that we would do after all of my treatments were finished. Surgery left me with nerve damage and the inability to lift my left arm above my shoulder. (I had to have physical therapy to get it back) Also during the surgery they removed lymph nodes and it reviled that the cancer I had spread to five lymph nodes; this meant that my cancer was staged three. But all I was thinking was that I was going to kick it ass.   Bring on the treatment because I want to get this over with and move on with my life.

Tuesday, May 10, 2011

The first Time Around

My Mother had breast cancer when I was twelve. Twelve is old enough to understand the possible implications of this terrifying disease but not emotionally old enough to process it. My mother survived, thank God, and is still doing well. It had always occurred to me that I needed to be aware and watch out for breast cancer in my future but it never occurred to me that I would have to face breast cancer at 27. Six weeks after I stopped breast feeding my then ten month old daughter I was lying in bed and felt a hard lump in my left breast. I looked at my husband and said, “What the hell is this?” both of us immediately knew it was breast cancer but of course this is not what we told each other. “Maybe it is just a clogged milk duct but we better have it checked out,” was my husband’s reply. We went on a camping trip that weekend that had been planned for months. It was a wonderful trip but literally every five minutes I found myself feeling the lump in my breast imagining the possibility of what it was. That Monday we went to see my doctor; she scheduled an ultrasound for the next day. At the ultrasound the tech assured me it was probably just a cyst. But when the radiologist came in he said he wasn’t sure what it was. “It doesn’t scream cancer, cancer is often obvious like a 6’5” transvestite walking down main street.” He decided to do a mammogram and then changed his tone. “Megan, I hate to say it but this looks like cancer.”  We did a biopsy the next day; my 27th birthday. Yah, Happy birthday to me. The results came back, it was cancer.