"H" is for Hospital

Every day when I drive my daughter to her preschool, we pass the hospital where she was born and where I had my surgery.  Most days she asks me about it as we drive by, confirming that we both do indeed have a connection to this massive building.  She is consistently searching to find connections between the two of us, she thrives on it, and I in turn, enjoy this affirmation of a love I could never have imagined before she arrived.   

Before my surgery, I drove her to school every morning and picked her up most afternoons.  I would put her to bed almost every night.  This wasn’t because my husband wasn’t willing, it was because that’s the routine that had been established and it was one sided and unfair to him more than anything.  The first time I ended up in the emergency room, I drove myself in the middle of the night because she was sleeping and my husband needed to stay with her.  The second time, she found me curled up on the bathroom floor and ran to get my husband.  She drove with us to the hospital but my best friend met us there and took her home because I didn’t want her at the hospital.  Over the next five days, I only saw her once a day and usually it was only for about fifteen minutes.  She was always happy to see me but a hospital room is boring for a two year old and I was stuck in a bed.  In those five days there was a paradigm shift and all parental duties went to daddy.

It was harder for her when I got home.  I couldn’t move very fast and I couldn’t pick her up but I was there and that was confusing.  She had to be careful with me and she was.  She was very aware of what was going on and I was honest and answered her questions the best I could in terms that she could understand.  Throughout the process, we talked a lot about what was going on and we tried to be honest with her about what to expect.  But at this point I wasn’t in charge of any real parenting duties.  My patience was suddenly vast and my husband was exhausted but he was also adamant that I wasn’t going to rush the healing process by overdoing it.  If we were both in the house though, she always kept me in her line of sight.  She was afraid and it was heartbreaking.  I did pick her up too early and ended up pulling a muscle in my abdomen.  It hurt but I didn’t cause any damage and it was worth it to be able to hold my baby again. 

Chemo was more challenging because sometimes I felt fine and other times I was exhausted and painful.  My first day off the steroids in the first round of chemo, she and I spent the morning chasing each other around the house and then I crashed hard and my first bout of neuropathy showed up.  My husband and mother in law basically spent the weekends taking her places so that I could rest, but it became more difficult because she caught onto that and started saying that she just wanted to stay home.  By the third round though, we all knew what to expect.  “This is the last time with the bad medicine Mommy?” she would ask, and I would nod and assure her that yes, this was the last time.  When my hair fell out, she would rub my head and say, “Don’t worry, it will grow back.”  And now that it is indeed growing back, she rubs her face in it all the time.  Although, she is deeply concerned that it is brown and not blonde, like hers.

After the last round of chemo, I quickly got back to helping my husband with the hard stuff.  Mainly bedtime, which is always an adventure, but we share the responsibility now and it’s so much better.  It’s easier because we can explain to her whose turn it is to do what and she schemes like all evil geniuses should.

She is visibly more relaxed and is more comfortable every day.  She asks fewer questions about why I had to go to the hospital and what exactly was done to me.  But occasionally she will still give me an odd look and ask, “You’re all better now Mommy?”  Over the past four months every toy she owns has had to visit the doctor for “tummy troubles”.  Some have required surgery while others just ate too much, but she is very good to make sure they all see the doctor regardless.  No two year old should have to go through what she did, but she is a remarkable little human and like all small humans, is stronger and smarter than most grown-ups realize. 

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.