New Priorities and Resolutions

Six weeks out of chemo and life is settling into a routine that I’m content with, but I’m surprised by the recent changes in my priorities.  I’ve never been the most motivated person.  In fact that’s a flaw that I’ve always hated in myself…although not enough to do anything about it apparently. 

Two weeks out of chemo I started going to a yoga class.  The first one was really difficult and I was frustrated by how weak I was.  I think I mentioned before that I fell over twice.  After that I started working out two days a week in addition to the yoga and that felt really good.   Then I upped it to 3 days a week plus the yoga and now I’m figuring out how to organize my life to up it to 4 days plus yoga.  I’m reading fitness articles and trying out new classes.  I’m ordering new exercise clothes and Bluetooth headphones.  I’ve become a gymaholic and I love it.  I get excited on my gym days and find myself bummed on the days that I don’t get to go.  I’m addicted to the endorphins and I care about how my body looks for first time in well…ever.  (I’m also disheartened by how few people understand the term “Linda Hamilton arms”.  The nineties were not that long ago people.)

But behind this new found hobby/lifestyle/obsession is the fear that the cancer will come back.  The tracking cookies embedded in this wonderful world we call the internet know about my cancer, so every social media site I go to pops up articles about cancer and new research and treatment.  It’s creepy but occasionally I see something interesting.  When I started with my treatment, I was intense about kicking fear to curb.  We are constantly told about all the things that cause cancer (it’s everything by the way) and it’s easy to fall into that paranoid space but I was adamant that wasn’t going to be me.  And yet, it is me.

I’ve started drinking the occasional glass of wine or beer but I hesitate every time because I worry about my body.  In fact I rarely finish even one glass.  I worry about my sugar intake and I’ve completely given up meat except for fish.  I check my moles more frequently than I probably need to and I will make my husband look at them, just in case they look different.  It’s not the kind of fear that has taken over my life, it’s just that voice in the back of my mind that reminds me more often than I like that I’m not invincible and that shit happens that we cannot control.  Knowing that and having actually lived through it are two completely different things. 

And so I work out, and I feel powerful again and in control.  Between working full time, parenting full time and exercising I am having a hard time finding time to work on my knitting and my dyeing and I am missing it.  I still have projects going but it’s definitely taken a back burner.  So this year as we approach the time of resolutions, mine will be to find time to do it all.  I will get my business off the ground this year.  I will have a rockin’ body, and I will be a bad ass mom who is always planning new adventures.  My garden will thrive and there will be taco parties again.  It's a tall order but what can I say, I'm motivated to live the life I want.

When Sickness Pulls You Back

It's been almost a month since my last post and there are a variety of reasons for that but the one that pops out the most in my head is time.  After my last treatment I was determined to jump back into my life.  I was ready for what I liked to think of as "the new normal", not a return to what once was, but a better, more proactive version of my life, and I did.  I took on more responsibilities around the house and with my daughter.  I started working out 3 - 4 times a week and joined a yoga class.  I felt amazing.  I still had to get my weekly blood draws and I dreaded them so much.  Once a person who could tout being fearless in regards to needles, I now go into cold sweats thinking about them.  I can do it, but I really don't like it.

Which takes me to Friday, when I was scheduled to have my first CT scan post chemo treatment.  In my head, this was the day, the final day and I was feeling rather good about it.  They were going to scan me and see absolutely nothing.  I took the whole day off because I knew that it was going to take hours but I honestly thought it was going to be no big deal.  I was just going to drink some stuff and get in the machine.

The day before I got a call telling me how much I was going to need to pay for said scan, one of these days I'm going to do a post about our incredibly screwed up insurance system but that is not today.  So I had to fast, no food, no water...no coffee.  I dropped my daughter off at school and had some time to kill, usually that would land me in a coffee shop (one of my happy places), but not that day.  So instead, I took my leisurely time and just went early.  The building was new to me, which is surprising because after my experience, you would think I would know the ins and outs of the entire hospital complex, but Medical Plaza 4 was new ground.  I found out right away that it is the basically the cancer building.  The cancer center, the breast cancer center, and the digital imagining center...where they look for cancer.  Once I negotiated down my financial responsibility I was taken to the women's waiting room.  It was of course, the first freeze of the year so it was very cold and I was instructed to change into a hospital gown and scrub pants.  I was joined by older women in similar garb wrapped in blankets.

A nurse came in and took me to the lobby where I was given a liter of iodine water that I was told to drink within 15 minutes.  I made a joke that I had only done CT scans with IV contrast.  To which the nurse answered, "Oh, you're getting that too."  Remember when I mentioned the cold sweats?  Well, getting an IV is actually worse than a blood draw for me.  So for forty minutes, I thought about this, while freezing and drinking iodine water.

Finally they took me back to the IV room and the nurse who was helping me turned out to not be great at placing IVs.  After two unsuccessful attempts, she said that she was going to get help and the room started to spin.  When they came back, I was in the process of trying to pass out.  I was dizzy, nauseated, and according to them, completely drained of color.  They immediately put an ice pack on my neck and alcohol under my nose to keep me awake.  Then the doctor came rushing in with a stretcher and they laid me down and started taking vitals.  Pretty quickly, I started feeling better and they offered me juice, but if I drank juice I couldn't get the scan and I really didn't want to have to do all of that again.  The new nurse placed my IV and it was much better.  She moved me to a wheelchair and wheeled me down a hall to room right next a large window where I was placed in front of my own reflection.

There I saw a sick person.  A person wearing a beanie and a hospital gown, wrapped in a blanket and I was overcome with so much anger.  I thought I was done with all this.  The scan itself was uneventful and quickly I was back in my own clothes and in my car.  I spent the rest of the day in bed watching TV and feeling generally sorry for myself.  Thankfully, that afternoon I was called into work and I took my daughter and the day got better.

But the next day, I started feeling really strange, just off.  We had a busy day scheduled but that night, while we were at a friend's birthday party, I had to leave early.  When I got home, I was shaking so bad I could barely take my coat off.  I was freezing.  I took my temperature and found that I had a temperature of 100.8.  Normally, that's not something to be worried about, but in all the chemo literature, anything over 100.5 requires a call to your doctor.  I waited a little while in bed but I still felt bad and finally I gave in and called the answering service.  I have a really good doctor who is on call all the time, so he called me back personally at 10:00 pm.  We talked for awhile about where I was in the treatment and how I wasn't having any other symptoms.  In the end he said he wasn't that worried because it could be a reaction to the CT scan or a mild infection brewing so he said to take some Tylenol and call him in the morning if it wasn't better.  It wasn't, I called and he put me on antibiotics but all yesterday I was in bed feeling pretty crappy.  Last night my fever went up to 102 and then finally broke in the middle of the night.  So this morning I feel better but now I have to go to my oncologist where he decided that besides talking about my scan, he wants to do more blood work today.  Oh good.

At least I got in some good Penny Dreadful watching while sick in bed.

Done and Done Chemo Day Number 3

Yesterday was my final chemo treatment.  I cannot express the sense of dread that I felt leading up to it.  I rebelled almost to the end, subconsciously, but still it was a form of rebellion.  I waited until the very last minute to refill my meds, I forget my lab orders for my lab work the day before.  I sobbed uncontrollably and told my husband that I didn’t want to do it.  If this sounds like weakness, maybe it is.  But more likely, it’s the breakdown that needed to happen all along. 

Being on this side of it though, feels amazing.  Yes, the next two weeks are going to be a bummer, but knowing that I don’t have to do it again is such a relief.  And honestly, this last session was the best yet.  I felt like my doctor really listened to me when we were discussing how last time went and he made the appropriate changes to my treatment in terms of dosage and premeds.  He answered all of my questions and talked to me about new studies and the different treatment options available and why we went this way with me.  The nurse used a smaller needle for my IV so that wasn’t nearly as painful as it has been in the past, and I was only there for about 6 hours, which was much preferred to 8.

So here are my tips to anyone receiving chemo in the future:

1.  Be candid with your doctor and ask questions.  I know that sounds obvious, but there are a ton of treatment plans available and you want to be informed about what your options are.  Make sure that you feel comfortable with your oncologist.  Are they up to date on new studies?  What are the side effects both short term and long term?  Don’t hesitate to call them if you have concerns or if something feels wrong.  I’m not one to complain but when I told my oncologist about how painful the neuropathy was on the second round of chemo he was very concerned and he changed how much taxol (one of the chemo agents I received) I got the third time because neuropathy can be permanent.  If you want to get a second opinion, get one.  It’s your body and your life, you have to feel comfortable with the choices that you make.
2. On the actual day, dress warmly and comfortably.  I probably looked ridiculous yesterday in a chunky orange sweater, skull leggings, purple socks, and green sneakers but I was comfortable.  Bring a warm, fuzzy blanket.  If your chemo room doesn’t have heating pads, bring one or an electric blanket, you will get cold.  If you have an IV versus a port, your arm will get very cold.  I actually put a heating pad under it.
3.  Be prepared to sleep a lot but bring things to do.  I tended to sleep for the first couple hours because of the Benedryl but then I would wake up for the rest of the afternoon.  It was a perfect time to get some knitting in and listen to a good audiobook.   
4. Bring someone with you.  My husband is the strong, silent type and while we didn’t talk a lot it was a comfort to have him there.  It’s nice to have someone to check in with who can help you when you need it.  Basic things, like getting you food or helping you to the bathroom.  
5. Drink lots of water, and start before you get there.  Your veins need you to be well hydrated to work properly.  The premed can also leave a strange taste in your mouth and despite getting fluids, you will be thirsty…which means you will also have to use the bathroom a lot.  
6. If you are a coffee drinker aka caffeine addict, do NOT skip your morning cup the day you get chemo.  I made that mistake my first time and ended up with a killer headache on top of everything else.  It is not worth it.
7. Exercise is a really great way to battle the side effects afterwards.  I take walks which gets the blood moving and helps the neuropathy, the fatigue, and actually calms down the hyperactive annoyance of the steroids.  I know it sounds strange when you feel exhausted, but it helps me a lot.
8.  Make friends with people who have gone through or are going through a similar experience.  The cancer club is vast and once you join it people you never expected come out of the woodwork.  As I said to a friend, I always wanted to be a part of some type of counter culture, but I didn’t expect it to be this one.  These people will help you so much.  It’s important that you don’t feel alone, and the sheer kindness is astounding.  When I was feeling down during a chemo treatment I would shoot a quick text to my cancer buddies and they would answer almost immediately with cute videos and words of encouragement.  Your friends and family will help you and love you but they don’t really get it and you need people in your corner who get it.  
9. Be gentle with yourself and the people taking care of you.  This is a difficult time and it’s okay to feel down about it.  You could feel normal one day and then sick the next, this is normal albeit frustrating.  If you can’t work, don’t work.  But if you feel good, do something fun.  Laughing and being with friends is so cathartic.  That being said, remember that your white blood cell count will drop, especially 7 – 10 days after chemo so avoid sick people and large crowds if you can.  My toddler got sick in between rounds but I bolstered up on Echinacea and Vitamin C and thankfully avoided any illness.
10. If you find yourself walking this journey and need to talk to someone, please feel free to contact me.

My doctor visits are far from over yet, but this hurtle is done.  So cheers to the end of chemo and looking ahead to brighter days.

Escaping Cancer Land

The steroid insomnia hasn’t been as bad this time, but it’s obviously hitting me a little bit on this final day.  What’s on my brain right now has little to do with cancer and chemo except that for a moment it helped me to feel something else and to even forget about it. 

Sometimes people know what they will do with their lives, professionally I mean, but sometimes the world throws you curves and you end up in a place that was wholly unexpected but not unwelcome.  There are always parts of a job that are monotonous or drive you crazy but then there are days like today.  I have a strange job, but only in the sense that people often tell me they have no idea what I do.  I manage a small veterinary clinic which is supposed to mean that I work mainly with people: employees, client relations, etc.  But having worked there for over a decade now, I have watched people’s pets grow from puppies and kittens to senior pets.  I have become dear friends with clients and held them in very difficult times.  I will give people my cell phone number because sometimes that is just what you do. 

Living in Houston (especially during an oil crisis) has also meant that I’ve had to learn the ins and outs of shipping pets internationally.  This is not glamorous but it is complicated and it is serious because if done incorrectly some countries will euthanize an animal upon entry.  It’s stressful and expensive and for some reason I find myself drawn to helping people through it.  Maybe it’s living vicariously through someone else’s adventure or maybe it’s figuring out the process and making a plan (that’s the stage manager in me), but regardless, I take it very seriously and I enjoy doing it despite the anxiety. 

Today I had two major issues, a dog that I have known for almost a decade and who is beloved by my staff was having a pretty major neurologic episode and the doctor and I were having a difficult time getting her into the specialist.  I’ve been working shortened hours because I get so tired, but I wasn’t going to leave until we got the dog on the way and the medical record sent.  While we were finally getting that wrapped up, a new client came in who was supposed to be travelling to Central America with his dog today.  He had gotten the paperwork done in Colorado but the paperwork was wrong.  It wasn’t the right form, it wasn’t endorsed by the USDA, it wasn’t even done within the right time frame.  I got on the phone but quickly discovered we were out of luck, there was no way I was getting this dog on a plane within 24 hours. 

I can’t explain it, but I felt a kinship to this man and so for the next two hours he made phone calls, I worked on paperwork and we did as much as we could to figure out a solution.  It was still up in the air when I was starting to leave, but we had options which was a step in the right direction.  He was still sitting on the step as I was leaving and he asked me for a ride.  He had taken a cab because he’s not from Houston, this was just a quick stop from Colorado on the way to Central America and he was staying with friends.  I paused for just an instant and then waved him and his dog toward my car. 

Do I normally invite bearded, tattooed strangers into my car?  No.  But sometimes in your life, you make connections and you trust your instincts.  It was a delightful car ride.  I found out that he is dancer/performance artist going to teach English through movement in Central America.  That’s kind of when it all made sense, a dancer from Colorado, he was my people.  You just know them when you see them. 

I had a similar experience in college when I found myself in charge of volunteers and operations at a Space Convention.  I went to a friend’s house to pick up a total stranger who was going to be my partner in this brand new adventure and was faced with the most adorable bearded man who to this day is still one of my favorite people on the planet despite not having talked in years. 

I was exhausted when I got home yesterday, but I was happy.  I felt like I had helped someone and that for one fleeting moment, cancer didn’t enter the equation.  I could just be me.

Expect the Unexpected: Chemo Day Number 2

My second treatment was quite a bit different from the first.  This time I had to see the doctor before I got started, just to go over how I responded to the first treatment and make sure there wasn't anything that needed to be adjusted.  My lab work has continued to look good and he was happy with my progress.

I received the same pre-medications as last time, but they started me on a faster drip rate of the chemo because I did okay last time.  Ten minutes in I got really hot and my chest tightened.  I felt like I couldn't breathe and my husband went for the nurse.  When he got back, he said that I had turned beet red and my ability to breathe was getting more and more difficult.  They stopped the chemo and switched me over to straight saline fluids.  It got better quickly and they gave me more benedryl and waited for about 20 minutes.  When they started the chemo again, they started it very slowly and then gradually increased it throughout the day, which meant that instead of being there for 5 hours, I was there for 8.

I didn't have any other adventures but the allergic reaction was scary.  This time there were other people receiving chemo at the same time and it was nice to have people to talk to who were going through the same thing.  Last time I was tired as soon as I got home, but this time I felt pretty normal until around 7 pm and then I crawled in bed to rest.

The steroids do a number on my sleep pattern which is why I was wide awake at 2:30 am.  Thankfully, there is still a fair amount of British television I haven't seen to keep me occupied.

I am confident going into the recovery period having been through it once.  I did well staying ahead of any nausea.  I take steroids the first three days after chemo which as I said before do a number on my sleep pattern, but they do help me to feel relatively normal.  The hardest part last time was the four days after the steroids.  Neuropathy (pain and numbness in the hands and feet) kicked in right away and the fatigue was pretty bad.  But two weeks out, I felt good, and then my hair started falling out.

Losing my hair has consumed a lot of my brain power.  Once it's gone, I probably won't think about it as much, but the process has been bizarre.  Paul took the clippers to my head as soon as it started and then again a few days later to go even shorter.  It itches and while I'm wearing bandandas when I go out and at work, I don't wear anything at home because it itches so bad when I do.  Not having to shave my legs is nice and my skin feels really soft.

Knowing that I only have to do one more treatment is comforting.  This New Year's holiday will be very special for me as I hope to feel not just like myself again, but as a better version of myself.

Lori Petty Eat Your Heart Out

Washing my hair this morning, my fingers ended up covered in quite a few strands of my hair and I thought, oh here we go.  I got ready like normal but as I was going through the morning, I noticed that I was shedding a lot.  There wasn’t a huge clump, but there was a lot on my clothes and the couch.  Paul and I talked about it and we decided that today was the day to buzz me down.

Sex and Fertility

This post has been a long time coming considering my history with trying to get pregnant.  Note: If for any reason the idea of me being sexually active makes you uncomfortable, this is not the post for you…but I did give birth so, you know, I am.

When Paul and I first decided we wanted to start a family he was hesitant, a normal reaction I think.  He is a very logical human, he wanted to make sure that we were prepared to provide for a child in the best way possible.  At that point I was twenty-six and oh boy was I ready.  So I did what I do, I researched and read until I knew everything I could about my body and my fertility.  I was ready!  But unfortunately, you can’t research a baby into existence and time passed with no luck.  I knew that you have to give it a year before you freak out so we did that.  But then I started to freak out so I went to see a doctor.  I ended up seeing multiple doctors and I won’t bore you with the details, but I was eventually diagnosed with PCOS (Polycystic Ovarian Syndrome).  Boiled down that means that every month my ovaries have a little party and I developed a lot of follicles that rarely progressed to being fully developed eggs.  So I started taking fertility drugs.  I did five rounds of a medication called Clomid that helps your hormones develop a fully functional egg…it also makes you an emotional basket case, but just for about 5 days.  No luck on the Clomid.  Then for a year I was on a medication called Metformin, which is actually a medication for diabetes but has a side effect that apparently readjusts your hormone levels.  That was also not a pleasant experience.  Because it was for diabetics, my body stopped being able to process sugar in the same way, so I just felt sick to my stomach all the time. 

So years are going by with no luck.  Anyone who has gone through this, and there are a lot of us, understands what this means.  It means that you cry every month when your period comes.  You have calendars and charts and schedules and sex is suddenly no longer about enjoying your partner, but it is your duty to do it correctly!  You lay in weird positions afterward, you prop your hips up with pillows and you pray to the gods that this time is the time.  In the summer of 2012 I got pregnant and there was much rejoicing!  It was totally natural, I was so over drugs by that point.  But I lost it at around 7 weeks and I was devastated.  Having been through that experience and having talked to many of my friends, early miscarriage is so incredibly common but that does not make it any easier.  I didn’t want to tell anyone, but I had to because I had been so excited that I had told all of my parents (I have a lot of those) so it was a series of very painful phone calls. 

But I will say this, having a miscarriage brought my husband and I closer together.  We were able to grieve together and after that we were both in the same mind frame that we were ready to be parents.  Looking back, everything happened the way it was supposed to because 2013 ended up being a difficult year for me.  I lost my grandmother who was basically my second mom and my dad got very, very sick.  That is his story to tell but it was a very painful and memorable time.  In some way I cherish it because I got to spend a lot of time with my dad but you never want to see your father in pain.  I learned a lot about myself during that time and once we were through the really scary part I was determined that now I could focus on getting pregnant again. 

We were back on a sex schedule, but this time I was intense about sticking to it.  There was one night we were having one of those stupid fights where you just constantly bicker and we were lying in bed and I announced, “I don’t want to talk to you but we have to have sex tonight!” I like to think that was the night because now it’s a hilarious memory.  But who knows, all I know is that I got pregnant and we did a happy dance in the kitchen at 5:30 am holding a pregnancy test.  Pregnancy after a miscarriage is tenuous and there is a lot of fear but we had a great time and ended up with the most perfect little girl. 

So fast forward to cancer time.  Now we have a toddler who is hilarious, stubborn, smarter than I would sometimes like and moving a million miles a minute.  Having a hysterectomy is a lot like having a baby.  Doctors are not very nice to husbands.  They looked at them daily and say, “No sex for at least 6 weeks, I’m serious.”  It’s a broken record and in the hospital, I promise you, sex was the last thing on our minds.  But then you come home…and you start to feel better, and if you are a research person like I am you read WAY too much on the internet.  One thing my doctor had said to me a few times in the hospital that I didn’t really key into until I got home was, “Call me if you start having any sexual dysfunction”.  Feeling like crap, I blew that off, I had bigger things on my mind.  I don’t know why, but one day when I was feeling better, those words hit me and I suddenly had the realization that I was a thirty four year old woman who may not be able to achieve orgasm anymore.  That was not okay! 

You have to understand, I do have long term effects from the surgery.  The outside of my right leg is numb and will be probably be numb for months.  So it wasn’t outside the realm of possibility that I had nerve damage in other places.  Everything I read said different things, because everyone has a different experience.  People who had fibroids before their surgery said that sex was ten times better, others said it was more painful. 

I am happy to say that there is no damage, but it is different.  I am physically different, there is no getting around that and menopause does a number on you. 

I often forget that I no longer have a uterus.  I see babies and I think about “when” I have another one and then I remember that I can’t do that anymore.  As an only child myself, I am perfectly aware that it is a fine option, but in the back of my mind, I did always hope for two.  Feeling grateful throughout this process has really helped me readjust when I start to feel sad, but not being physically able to have any more children is going to take some getting used to.  Especially because that was a main focus in my life for so many years.  Sex without concern or expectations is liberating and knowing that I won’t ever have a period again is cause for much rejoicing.  But it’s a mixed bag.  

First Things First: Chemo Day Number 1

Today I had my first round of chemo.  I was loaded up with a ton of stuff: blankets, book, audiobook, food, knitting, water and an enormous cooler with dry ice and cold caps.  I’m going to just jump right in and say, the cold caps are not for me.  I am very happy that they exist and I know that they help a lot of people but they were very uncomfortable.  Heavy, and I know that it’s obvious when I say they were cold, but my whole body was shaking under two blankets and the headache was intense.  The way that the process works, you have to put them on an hour before treatment, throughout treatment and then four hours afterward.  I was miserable, so my theory is, this experience is bad enough without feeling like that and my hair will grow back.  I already ordered some cute scarves, so just call me Sinead.

The rest of the process went really well.  It was long because they have to go slow.  First they gave me Benadryl, Zofran, Zantac, and steroids to prep my body for the chemo.  There were two different chemo agents that are given back to back, so after all was said and done I was there for about six hours.  Benadryl knocks me on my ass, so I did sleep a little bit, and I was really tired when I was done.  After resting at home for a little while, I did go outside and take a long walk and that made me feel a lot better.

I have oral meds to combat nausea and that mixed with the steroids for three days means that I will most likely feel pretty good for the next three days and then the nurse said that I can expect flu like symptoms and fatigue. 

I am having some bummer issues with the menopause.  The hot flashes have arrived and they are annoying.  They aren’t horrible but they happen unexpectedly and I know when they are about to hit because I get really dizzy before I’m suddenly one very hot mama.  It goes away relatively quickly but then I get really cold.  I was really hoping I was going to manage to skip this problem, but so far they are manageable, just a nuisance.

I go back in three weeks for my next treatment.  I have to get blood work weekly to watch my blood count and make sure I can handle it.  So here we go.

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.