Scars and Bones

When the specialist in the emergency room first introduced the idea of surgery, she started by talking about what the incision would look like.  She told me that most likely it would be a very small horizontal incision.  I remember being in a morphine induced state of confusion and wondering why this was the conversation.  My answer was and continued to be, “Just get it out.” 

The next day my gynecologist came in to talk about the surgery and she told me that if I really wanted her to she could try to do it laparoscopically but she recommended a small horizontal incision.  My answer remained the same, “Just get it out”.  She then went on to explain that if the tumor wasn’t so large, the laparoscope would be the norm, with my tumor being 6 inches wide, a horizontal incision was the recommendation, and a vertical incision was only when they highly suspected cancer.

I was so out of it after the surgery I didn’t look at my body, I just held onto my morphine button and tried to sleep.  When the doctor came in to explain the surgical complications, I didn’t think about the incision.  The next morning the oncologist came in and asked if he could look at my incision.  I hadn’t even noticed up to that point that I have an abdominal wrap around my body and when I moved it, I saw a 4 ½  inch vertical incision on my pelvis.  At that point, I understood why they had been talking about incisions so much.  It was absolutely shocking.   

My incision has healed into a scar now.  It’s a solid pink line that is actually kind of beautiful.  It will fade, but it will always be there and I want it there. 

I had a similar experience when the doctors started talking about chemo.  The very first thing he said was, “You can most likely keep your hair.”  I could not fathom why he was talking about my hair.  What about my kidneys?  Chemo is a really terrifying prospect, especially when you understand what is does to the body on a cellular level.  My hair was not my first thought. 

But then I started talking to friends who have gone through chemo.  One in particular told me that the hardest part was losing her hair and I asked her why.  Her answer hit a cord with me, “I looked in the mirror and I wasn’t me anymore.”  Suddenly, it made a lot of sense.  So many times throughout this process I have felt like my body and I were not on the same wave length but at least I still looked like me.  How would it be if I felt disconnected from my body and then didn’t look like me?  I get it now.

It was a reality check to start paying attention to my body and I’m feeling great right now.  True, next week I go in for my first chemo treatment so that will probably change.  But for now I’m working really hard to get my strength back. 

I’m in an interesting position.  Having been thrown into menopause I am now at a higher risk for osteoporosis so I need to take care of my bones.  Weight training, calcium, these are things I have to think about right now.  Thankfully, I’m not having symptoms of menopause.  Since my cancer was stimulated by endometriosis, I cannot ever take estrogen, so let’s hope those symptoms stay away.  Being in my early thirties, these are not issues that I thought I would need to think about anytime soon.  But it’s not bad, and I’m happy that I’m changing my routine to include exercise that not only helps my body but is helping my mental state.  

The Mind is a Dangerous Place

The other night I found myself sitting on my bed surrounded by bags and purses of various sizes and all the accoutrements that would cohabitate said bag.  I was on a mission to find the perfect “I have cancer and have no idea what I might need” bag.  Not too heavy, but not too small.  It would need to have adequate compartments for small items and pens.  It would need to hang at just the right place on my body.  This is how Paul found me.  He asked if I was okay and I just shook my head.  I hadn’t cried since making the chemo decision and I needed to.  I did, but only for a few minutes, and I then I turned my head to my mess of an end table and refocused my attention. 

The next day I went to my first Reiki session.  Throughout of the whole thing I kept wandering what I was doing there.  My brain was on overdrive and it was hard to relax.  For those who don’t know, Reiki is a type of energy healing that involves chakras and while I’m spiritual in my way, this was very new to me.  There were definitely places on my body where I felt different while she was working on them.  At one point, memories of my grandmother came flooding through me.  Having done it I am pretty sure it’s not going to be a regular thing for me but afterward I did have an epiphany about where I am emotionally and it’s not good. 

I have been so caught up in being strong for my family and my friends and my co-workers that I have not dealt with any of this.  I just keep pushing it farther down and telling myself that the only way to conquer cancer is through positive thinking.  I do still believe that, courage is better than fear.  But you can only be logical for so long before the pain erupts and I haven’t done that yet. 

Throughout all of this, what has surprised me most is the sheer kindness and generosity that I have been shown.  Yes, through friends, but also through acquaintances and people that I know peripherally.  It has been astounding and I am so grateful and baffled by it.  It’s also very uncomfortable in a way.  I am fiercely independent and I like to be in control.  I went to the consultation with the oncologist alone and that was by choice.  I asked the chemo nurse if I have to bring someone with me to my chemo sessions (and I do, and I am happy with who it is), but I asked because I do not handle showing weakness well. 

I’ve already started joking around with the oncology nurses.  I did that in the hospital too, I figure that being memorable and well liked is the best way to go when others are in charge of my body.  Play it light and fun, that’s the way.  When I was in labor with my daughter, I had two wonderful nurses who kept talking about how lucky they were to be in with me and not down the hall with the woman who kept raging and hitting.  Don’t get me wrong, I know that everyone deals with childbirth in their own way.  I proposed to my anesthesiologist as soon as the epidural kicked in, which was immediately (he was very good).  In between pushing and being on oxygen, even though I was exhausted, I talked to my OB about Star Trek and Thor.  This is my way and I like that about myself.  But as I get older, I’m starting to realize that I find it easier to accept help from professionals than the people closest to me.

How do you repay people for such help? For sleeping in my hospital room and talking to me at 3am to try to distract me from the pain.  For rushing out on a Sunday morning to meet me at the hospital to pick up my daughter so that she could have a fun day with friends rather than being at the emergency room with me.  There are countless others, letters and messages from people who have had similar experiences, two hour phone calls from friends I’ve known for decades.  I am conflicted.  Torn between feeling overwhelmingly grateful for a new understanding of what love is and resentful of cancer for putting me in the position to know. 

The Plan

Today I met with my oncologist to decide on a treatment plan.  Before giving me any kind of recommendation, the first thing that he asked me was what my thoughts were.  I appreciated that and for the most part he and I were on the same page about the next step.  I was surprised that his recommendation was a bit more aggressive than I thought it would be.  The low dose chemo that we had previously discussed was only one chemo agent, but he is actually recommending two.  I will have three rounds of chemo.  One treatment every 3 weeks.  I had a lot of questions about side effects and I’m not going to lie, there are a lot of possible side effects and a lot of things I’m going to have to do to keep my body in place where it can even handle the treatment. 

It didn’t really hit me though until the next part of my appointment, which I wasn’t prepared for.  The doctor sent in the chemo nurse and she was a wealth of information and very nice but also the harbinger of doom.  She came in with stacks of paper explaining the drugs, the side effects, and health recommendations throughout the process.  She explained how I will need to get my blood work done once a week and how closely they are going to be monitoring my blood count.  She told me that because my immune system is going to be so compromised that I have to be really careful about infection.  To which I have to keep reminding people, I have a two year old.  Let me just try to convey the look of concern that causes with EVERY doctor and nurse that I talk to.  She actually said, “Don’t let her cough on you,” and I had to laugh.  My kid is smart but she is so done with Mommy being sick and coughing is the least of my worries.  The grossness that ensues with a toddler is beyond coughing.  My kid will randomly spit on me and then crack up, but I digress…

We went over how I need to order cold caps in order to keep my hair.  These are basically freezing hats, kept on dry ice, which will have to be changed every 20 minutes during the 5 hour session.    She explained how the fatigue will get worse as the treatments progress and there isn’t anything they can do to help with that.  We discussed all the medications that I will be given and why.  I have never been so thankful for the small amount of medical knowledge that I have.  True, most of it is in regards to dogs and cats, but it has helped me to know what questions to ask. 

I will have medications at home, IV meds before the chemo, IV meds after the chemo.  As she went on, the magnitude of the situation really sunk in.  The worst part is that I’m feeling great right now.  My energy level is back up and my pain level is down.  I’ve been increasing my hours at work and actively playing with my kid. 

When I left the office, I got in the wrong lane, turned the wrong way and basically went in circles for a little while.  I didn’t know where to go.  I was prepared for hypothetical cancer treatment but actual cancer treatment has my head spinning.  I didn’t talk to anyone for over an hour after my appointment.  I just wanted to process all of this new information and get a handle on it before I had to explain it to people, and I had to make a lot of calls.

So I’m scheduled to start at the beginning of October.  There will be a couple appointments before then for surgery follow ups and lab work, but at least I have a few weeks to prepare for this new adventure.  

I'm Still Me

Cancer will not define me, but it has changed me.  Ever since college I have been fascinated with the concept of “identity” and how we define ourselves.  How others define us is irrelevant but how we define ourselves is so important.  It allows us to take stock of who we are and what we’re doing, to make sure that we’re content with the person we have become.  Stripped down to the basics it’s a measure for making sure that we can honestly say, “I like me”. 

When I was diagnosed the very first thing I said to my husband was, “This will not define me.  This is not who I am.”  I was adamant and I was angry.  I couldn’t fathom how I went from being healthy to being sick in an instant.  I didn’t feel sick.  Sure, there was pain, but that was from the surgery, doctors did that to me.  But it was a revelation in a way because it forced me to really look at my life and ask some hard questions.  Am I happy with where I am?

I have always been a person who leans toward the melancholy, wistful, “what if” side of life.  Not so much to the passing observer, but my inner fourteen year old goth girl is alive and well.  I can honestly say that I do like who I am and I love who I am with. 

But there are words missing from my personal definition list.  Words that I still long to add and that will require time and work.  I am a procrastinator and at certain times I lack adequate ambition.  I am a collector of hobbies, meaning I’m pretty good at a lot of things but a master of nothing.  I, like so many others, have a novel that is 2/3 of the way through the first draft.  I feel very close to my characters because I have been writing this novel for more years than I care to admit.  They are close friends who I visit every now and then and they don’t judge my absences.

My word bank needs to grow.  I want words like: fearless, traveler, entrepreneur, activist.  The words I’ve already collected are precious to me and I am so grateful for them, but I want more. 

A great friend who has traveled a similar journey said to me in a time when I needed her most, “Don’t ever let anyone tell you that cancer is a gift.” She was so right and I will never view it that way.  I did not ask for this but I will make the best of it, and I will allow this moment to help me find what I am missing and to appreciate what I already have.

     

32 Jars and Waiting

The promise of pathology results has been on my mind since my surgery.  I was in the hospital for a total of five days.  Thirty-two samples were taken out of me and sent to the lab for testing.  I still have a hard time contemplating thirty two sample jars filled with pieces from my body.  Every day my oncologist would come in, usually first thing in the morning and tell me there were no results yet and every day I would feel more and more adrift. 

Let me back track here and explain why pathology is crucial after a diagnosis of ovarian cancer.  The pathologist holds a lot of power because they determine the stage and grade of the cancer.  How fast is it growing?  How much has it spread? And what was at the forefront of my brain, how aggressive does treatment need to be?  Radiation?  Chemo?

On the day that I was discharged from the hospital, my doctors told me that they would call when the results came in.  So I waited…and I waited.  I did call and leave messages for them.  At one point on the phone, I was told by a nurse that my pathology came back negative, no malignant cells seen and I burst into tears because that would mean that I didn’t have cancer.  Five minutes later, she called me back, very apologetic to explain that had only been for one of the thirty-two samples, thirty-one were still pending.  So I kept waiting and finally my two week post op appointment with by gynecologist arrived and I was sure the results would be ready.  Everything I read online told me that this was when people usually got their results.  But no, still not ready.  There were two samples that had indeed come back clear, but the tumor and ovary were still pending.

Paul and I read everything we could find online about the different stages of ovarian cancer and just based on snippets of what the doctors had told us, we were pretty sure that I was early stage.   But I am a planner and I still felt like I had no plan and no way to even think about a plan until we knew exactly what had happened to me.

I will cut to the chase here, it took four weeks to get my results back and when they did come back, they weren’t as clear cut as I was hoping.  The initial lab couldn’t make a decision so they had sent the tumor to a cancer center for a second opinion.  That pathologist found that a great deal of my tumor was actually dead.  No one knows why or what was killing this tumor, but something was cutting off its blood supply and it was dying.  The living tissue of the tumor was Grade 1, Stage 1 which is amazing.  In normal circumstances that would mean no further treatment needed.  Surgery would be it and in 95% of cases there would be no recurrence.  However, because they can’t stage dead tissue, they couldn’t say that other parts of the tumor weren’t farther along grade wise. 

My doctor was very honest, he wasn’t sure which way to go and wanted some time to think about it.  But I was told I have three choices: 

1) do nothing 

2) do three treatments of low dose chemo 

3) full-blown chemo

The kicker came when he said, if recurrence happens, he was pretty sure we wouldn’t be able to cure it.  So this is where I am now.  Paul and I agree that full-blown chemo is off the table based on numerous factors, but most importantly with the living tissue being graded so low, we’re cautiously optimistic.  The choice is between the first two options.  I have a lot of questions about side effects but this is the decision that will be made on Tuesday. 

I don’t feel adrift anymore.  There is forward momentum and that is a relief but I’m still angry and I still get sad.  I’m scared but I’m moving along and that’s all I can do.

Welcome to the Journey

Welcome!  I am a thirty four year old mother of a toddler.  I knit, listen to a lot of The Cure, wear a lot of black, rescue many kittens, and revel in delicious crunchy, hipster foodie things.  Five weeks ago I went to the emergency room with severe abdominal pain and was admitted to the hospital for what was described to me as a “big mama tumor” on my left ovary.  The next day I was taken into surgery for what was supposed to be a straight forward removal of both the tumor and my left ovary, the surgery was expected to take an hour.  Eight hours later I was wheeled back into my hospital room.  While still very out of it from the anesthesia I had no concept of time but I did notice some very obvious things: my husband wasn’t there, replaced by friends and it was dark outside.  My doctor came in and explained that my surgery had been very complicated.  I ended up needing a total abdominal hysterectomy, which means I lost my uterus, cervix, and both ovaries.  In addition to that, the doctors also removed 2 lymph nodes, my omentum, and numerous other things.  I now had two doctors, the second being my brand new oncologist because guess what ladies and gentleman…I have ovarian cancer.

Being diagnosed with cancer is the most surreal experience and is incredibly difficult to navigate on a whole lot of levels.  I’ve learned a lot in the past five weeks about my body and medicine but also about my own strength.  We really don’t understand bravery until we are in the thick of it.  I am wrestling with a lot of issues that I think are important to share here on the blogosphere because cancer is a big, stupid, scary deal. 

I will expound on my experience and discuss the things that are pressing on me at any given moment, topics like: identity, parenting, sexuality, spirituality, nutrition, and grief.  This is a journey that many people face, more than I ever realized.  I hope that this will be a place to laugh, learn and find community because we are not alone but having cancer is lonely.