Finally doing something difficult

People always say I have done so many hard things in my life.  They look at Peace Corps, my travels, and moving to different countries as something that is difficult.   They read my other blog (which I haven't updated in AGES but I used to write about all my travels on http://jessicasrants.blogspot.com/) and think it sounds hard.  I wrote about the amazing things I would discover in new countries/cultures and of course always included the times I got sick.  It is entertaining.  When I traveled, I didn't hang out at the Hiltons/Sheratons/Meridians /Intercontinental hotels in the capitals, I was in the rural areas; where I feel at home.  I would be traveling by tuk-tuk, donkey, helicopter, overcrowded bus, land-cruiser on non-existent roads, and by foot.  It is inevitable that when you are in rural areas, you will get bugs (worms, bacteria, parasites, viruses, etc).  So often I have written about vomiting in varying conditions--off trains, for the dog to eat, into pit latrines, in the middle of crowded markets, etc.  I suppose that sounds hard--but you have to remember those were just a blip of time in my travels. Most of the time I was meeting amazing people, learning about different cultures and religions, trying amazing food, and experiencing things that surpass my ability to explain.

Moving to new countries where I know no one is not hard for me, it was fun.  An adventure.  So much fun I can't explain it.  Living in low-income countries is a pleasure--a treat.  Something I truly wish you all could experience, truly.  No where else can you really learn to focus on what is important in life--and really find happiness.  True happiness.  Peace Corps. Grad School. whatever--all of these had their hard moments, not necessarily when I was vomiting or ill otherwise, but other moments that were difficult.  Most people would be surprised to hear that for Peace Corps, the HARDEST part for most volunteers is feelings of loneliness.  Its a strange thing to be surrounded by hundreds or thousands of people, and feel lonely.  In all my travels, in all my time living abroad you get over what most people think is hard: squatting to pee (I actually prefer it now--i know, you think I am nuts), living without electricity, no running water, not having access to food you know/like, and fill in the blank with what you think.  You get over those things very quickly.   But in between those hard moments were AMAZING moments: teaching children, changing lives, visiting sites that don't exist in tourist books, and some of the most spiritual experiences of my life.  I got to meet and work with mothers and children on 4 continents.  Something I wouldn't trade for the world.   I was able to see things others only dream of--all because of the amazing career I chose.  Being able to see the difference I am making in the world.  I know each of us has an impact on the world, I do NOT want to diminish the role others play--but in doing what I do it is easier to see the impact.  A stay at home mom has a MAJOR impact on the world, but there is little if anything in her day to day life that reminds her of the importance and value of her work.  All parents have an impact on the world--something you can't really see b/c it is down the road.  In my job I get to see the difference I make in the world.  I have been tremendously spoiled in my life.  There are a million more places I'd love to go and things I'd love to do, but I do recognize coming from the wee town of Mapleton, Utah, who when I was growing up maybe reached 2 thousand people, and now many years later just crossed the 8 thousand people mark, I got to go far.  Very very far.  But, i don't see any of it as difficult. It was a pleasure.  Truly.

Cancer--breast cancer while pregnant--for me, this is the first hard thing I have ever done.  Balancing chemotherapy, 800 doctors appointments, pregnancy, working, taking care of an ENERGETIC toddler, keeping up with my home, supporting my husband, life--this is hard.  I have a lot of support.  My husband has been a saint, my church amazing, and my family very helpful.  But, life doesn't stop just because someone tells you you have cancer.  For the first time, when this is all over, I will be able to say--I have accomplished something that is very difficult.  For the first time I will feel strong.  I will feel I have done something difficult.  Granted given the choice, I could have gone my whole life without "feeling strong" and I wouldn't wish this on anyone, but I have realized for the first time in my life I will feel I have accomplished something.  

Responses

One thing that you realize quickly when you have cancer is that telling people is weird.  It's such a downer--dropping it on people makes them feel uncomfortable.  Now that I am bald, my appearance does it for me, but prior to that--i struggled to know who I should say something to.  A lot of people commented when I cut my hair, mostly with shock.  I have always had long hair, so it was quite a change and then you throw in the color--and well, people weren't sure what to think.  I wasn't sure if I should follow up their comment on my hair with, "Well i'm doing chemo right now, so its all going to fall out. I chopped it off to donate it."  Awkward.  Conversation stopper.  Or, rather then tell them I would choose to just drop it and let them be shocked in a few weeks when the hair was gone.

Then, when I chose to tell people (or now when they ask why I shaved my head) how they respond to my diagnosis tells me a lot about them and their experience.  I have lumped them into 3 general categories--

1. The majority of people respond with optimism.  "You will beat this! You are strong. You will be fine."  Sometimes it felt like they were trying to convince themselves as well as me.  Most of these people have only had peripheral at best experience with cancer.  On my REALLY bad days at the beginning, it annoyed me sometimes, their optimism.  I know that sounds crazy, but I wanted to yell back at them, "How do you know? You aren't a doctor. What if I'm not strong, will I fail you? What if I don't beat it? Am a failure then?" I never did say that, but some days I thought it.  I think that is normal--either that or I'm nuts. :)  I understand the optimism, and accept their positive energy happily.

2. The next two groups are the minority, and I am making a lot of assumptions about these people when i slot them into one of the two categories.  These two groups are those with personal experience with cancer.  Group 2 is a small number.  They either had cancer themselves or have a very close loved one they cared for throughout cancer treatment.  Their responses were/are a muted positive.  Not overly wordy, no quotes, no sayings, just down to earth advice and true experienced compassion in their voice.  Its hard to explain the difference between their response and those in group one.  It is subtle, but clear.

3.  The third group is the most puzzling group.  These are people who have had personal experience with cancer, but either it wasn't as close (a relative or friend, but they weren't the caretaker) or something else, I'm not sure, but not as close as those in group 2.  When I tell this group they respond with pure negativity.  Its surreal how many people have responded with negative comments.  One woman asked me how chemo was going.  I told her I was tolerating it well and it was okay.  Her response? "It will get worse. Much worse."  Um, okay.  I mean what do you say to that? I just smiled and walked away.

Others tell me horror stories of women they know who had breast cancer and how they suffered and how horrible it was and then they died leaving children or a husband or something.  I mean really? Another woman rambled on about all the complications her friend had had.  Side effects and strange really rare responses to the medicines that caused numerous problems for her.  The medicines almost killed her, and she thought treating cancer was worse then cancer.  She recommended I look into other forms of treatment, not chemo.  Maybe chemo wouldn't work.  Um, thanks.   Another told me chemo was poison and rambled on about big Pharma pushing it on oncologists, when herbs worked better.  Eek.  Okay.  I was raised in a home where alternative medicine wasn't alternative, it was part of our lives, but I'll take the chemo, thank you.

I don't blame anyone for their response, especially group 3.  I avoid those people in the future, but I understand life has clearly tarnished their view.  That's fine.  I hope to be in group 2 when this is all over.

Tomorrow I start my 3rd round of Chemo. I met with my oncologist on Friday. She is so wonderful. My blood work came back--white blood cells back to normal, and still anemic.  My levels (red blood cells) dropped a bit more, but still in the mild category.  She is impressed with my progress and very optimistic.  She had a long talk with the neonatologist following my son and they want to take him at possibly 34 weeks!  So strange to think he could be here that soon--that is in 10 weeks. It would mean I would do only 5 chemo rounds pregnant, and the rest after the baby comes.  She also told me the chemo will resume 2 weeks after the baby is born. Not quite the break I was expecting, but I understand.  We need to keep on top of this thing.

More to come--

Chemo Number 2-- Major Changes

Because my first Chemo was done during the week of Thanksgiving, it was done in a more rapid fashion. All three chemo drugs were infused in a few hours.  From now on, I will have two drugs infused on the Monday, and the third, shall we say more vicious of the drugs, will be slowly infused over 3 days.  I will wear a pump home with the medicine infusing, returning every 24 hours to get it refilled.

I was a bit nervous for number 2.  They say it will be worse, but not drastically so.  Plus, I wasn't sure how the pump worked.  As a dietitian, in my mind, it is like an insulin pump, but it will be hooked up to my port in my chest. I was wrong.

The infusion visit went fine.  Two medicines in in a relatively short time.  Then they hooked up the pump. It is much larger then I expected.  In the carrying bag, it is about 4 inches by 8 inches.  I have to carry it around. I can not unhook it to shower or sleep.  It can not get wet, and neither can my port--from Monday morning  until Thursday afternoon.  Not happy.  Plus, it makes noises.  Every 2 minutes it makes a clicking/whirring sound.  It sounds like a camera that uses film after you take a picture, that winding of the film.  Not happy.

I was very very worried about Biny.  He's two and half, and I have a tube coming out of my chest that connects to a bag.  I thought for sure he would want to play with the pump and pull on the tube.  We picked him up from the sitter, I hid my port and the tubes under my coat.  When we got home, I let my son explore  the port/tubes.  I tell him my port is my "ouchie" and he is very good about it.  He thought it looked funny all taped up. He said  it looked like a mouse.  Not sure if that's true, but after he checked it out he never really cared about it again.  He actually never cared about the bag/pump. Thankfully it was a boring looking black bag and the pump itself, which is visible through the clear front of the bag, has no lights and the buttons are locked when i leave the hospital so if touched they make no beeps.

So--despite my worries wearing the pump with a toddler wasn't an issue.  Well, the pump itself was annoying, but only to me. I would forget i had it on and stand up to be QUICKLY reminded with the tug on the tube i needed to pick it up.  I kept thinking I was carrying around my bag, and would go to put it down.  Obnoxious. Then, there was the need to bath and very carefully at that.  Remember, the port can't get wet. I am NOT one of those women who love baths (or hot tubs for that matter).  I just feel like a potato when I am sitting in water--gross.  But, its 3 days every 3 weeks, so doable.

With the more "harsh" medicine being infused over 3 days the symptoms were different this time.  Things settled in much slower. The first round, 24 hours later I felt like I had been hit by the exhaustion freight train.  But, this time, it was a slow creep.  I have no appetite and had a bit of nausea for 2 weeks.  Whereas the first time by week 2 I was on my way out of the symptoms, this time they lingered long into week 2 of my 3 week cycle.  

Another key difference with this round was one of the more memorable or visible symptoms finally happened.  It started a few days before the cycle, I got what is called "scalp ache."  Its when literally your scalp aches, especially when your hair is touched/moved.  Then,  the Monday of the treatment my hair began to fall out.  I would put my fingers in my hair and it they would come out filled with hair. As the days passed, the amount increased rapidly.  I think most people believe you go completely bald with chemo, but for most that is not the case.  You actually get bald patches and your hair thins out.  For men, they can leave their hair that stays--I've seen/known men who have done this. But, for women, having random bald spots surrounded by spurts of hair doesn't look pretty (full body radiation, needed in some types of cancer does cause 100% baldness). I was told by several, i would reach a point when the annoyance of having my hair falling out everywhere would trump my fear of being bald.  It was very obnoxious.  I think my son hated it the most--he would come running up crying because he had a spider on him, it would be my hair.  My husband was very patient and I think would have lived with my hair all over house with me just dripping hair, but I was getting annoyed.  Thursday night I asked my husband to shave my head.

It took a lot longer then I expected--but soon enough, I was bald.  It was very shocking, very shocking to see myself without hair.  But, almost a week later I am getting used to it.  Its strange and will take more time before it completely settles in, but not really an issue.

Next Monday is treatment 3.  I feel like I not much will change, and I know what I am in for.  The one worry is anemia, which would of course make me more tired.  My bone marrow might not keep up with the destruction of blood cells.  But, it is being tracked closely.

I saw my neonatologist for the first time.  This doctor will follow the baby's growth every 2 weeks until I am 28 weeks, then every week until I deliver.  At the end, he will end up having more appointments then me!!  thus far all looks good and if the amount of time he spends kicking my bladder is any indication of healthy, he is good to go.

Happy 2014!

Back to Work

First and foremost I neglected in my last post to mention a HUGE event that happened on Thanksgiving.  For those who don't know me well, I have always had long hair. I have chopped it off a few times--like when I left for the Peace Corps I cut off 26 inches.  Always donating it to Locks of Love.  As I will be losing my hair with chemo, I thought I might as well donate what I have before it goes to waste. My hair isn't currently as long as normal, just barely half way down my back. Which for me, is medium length.  My sister-in-law is a hair dresser and my 18 year old niece is in beauty school.  My sister-in-law did the cutting and my niece the color.  That's right color! I have never in my life colored my hair. It is dark brown, and aside from making it darker, coloring would require bleaching. I have always been way to anal about how healthy my hair is to let bleach anywhere near it. But, I decided as its all going to fall out, might as well go out with style.

We cut off 15 inches, more then I expected.  My sister-in-law gave me an a-line bob (not sure how you write that).  It's nice to have less hair to worry about.  Not that I ever put much effort into my hair. I have long hair so I can wear it in braids, ponytails, and buns.  :)  My niece put purple, teal, and silver stripes in my hair.  My son LOVES my hair. He is fascinated that it is colorful.  I pull it all in front of my face and say, "I can't see, where are you?" He loves it. He clears my hair out of my face and asks to do it again.  My husband, always a fan of my long hair and a proponent for not cutting it, likes it as well.  Good thing as its going to be short for a while!  Really short as it grows out.  Right now, is the shortest my hair has been since I was an infant.  Post chemo will be a new experience in how people with short hair function!!

As the title of this post suggests, I went back to work.  Not so much TO work but working. I am very blessed to have a job where I can telework.  So much is done on Skype.  We have team members in our main office in Arlington, VA, as well as in Massachusetts, North Carolina, and California.  As my immune system is low, and it is flu season, I have to be really careful. I already live with a 2 year old petri-dish, going to an office would be VERY bad.  In a 3 week chemo cycle, the middle week is called your Nadir. It is the week when your white blood cell counts are lowest and you need to be most careful. I hardly set foot out of the house all that week.  The next week I ventured to the office, wearing a mask, to sit in on our team meeting. Wearing a mask makes me feel claustrophobic--i hate breathing hot air.  But, the LAST thing I need is to be sick and have to postpone a treatment. It was nice to get out and see people.

I have to work at least 60% time to keep my health insurance, so that means I get 5 days off for each cycle of chemo.  The cycle is 3 weeks long.  This first time, working was harder then expected.  I can't be sure if its the pregnancy or the chemo, or the disastrous combo of the two--but my brain is a bit fuzzy. As both are known to make you feel a bit off mentally, the two together is just rude.  Its hard to focus--and then being exhausted and sick, well it was harder.  The third week things began to improve.  I could feel myself getting stronger.  My blood work came back from my first chemo.  My immune system  bounced back just fine--all normal.  My red blood cell count dropped a bit.  Small amount. Not because of lack of iron, but because my bone marrow is not keeping up with increased need for red blood cells.  But it was a minor drop. They'll keep an eye on it as I progress through more treatments.  It is a bit more of a concern for me, being pregnant anemia can have an impact on my growing baby.  If things get bad, I will need a blood infusion.  But that would be months down the road.

Speaking of baby, we had our 20 week ultrasound.  The baby is growing very well, is perfectly healthy. We had an extensive ultrasound, and everything checked out.  And--we learned its a boy.  A healthy baby boy.  :)  We also learned that this little boy will have more doctors appointments then me before he is born.  For now, he will be checked every 2 weeks, once by my OB then 2 weeks later by a neonatologist.  Then, after 28 weeks pregnancy he will be checked every week!  Busy busy boy.  But, I know he is in great hands.

As my 3rd week of my first cycle of chemo comes to an end, I prepare for number 2 and wonder what will be different in the next round.  

3, 2, 1 . . . . boom.

Having chemo for the first time is like waiting for a bomb to go off.  They prepare you for all the possible side effects. The ones that are almost a guarantee (exhaustion) and those that are rare (nail changes, etc).  You talk to others that have gone through chemo, you hear stories of those who were up and practically back to normal in 3 days and those who were down in bed for 2 weeks. You wait and wonder.  When will the symptoms come on? Which ones will I have? How severe will they be?  Will I be able to work next week? Take care of my son? Eat? All these questions and more swirling around in your head as you wait.

For me the first thing that hit was exhaustion.  As I said I felt fine Monday evening, but Tuesday morning the exhaustion was setting in. I slept all day, woke for a few hours in the evening to see my son, then back down and slept all night into the late morning.  It was strange to sleep that long and wake up just has exhausted.  It was an exhaustion like none other.  It was like having the flu during finals week times 10. My organs felt tired.  I didn't know I could feel my organs until that moment.  I slept all day until Tuesday evening. I then left with my little brother to go to my other brothers house for Thanksgiving.  I laid on the couch and watch my son be entertained by his cousins.  It was nice.  But still, no other symptoms were coming. I was still waiting to see if a bomb would go off.  Would my mouth break out in sores?  Would my hair fall out this treatment? Would nausea set in?  As the days progressed, exhaustion proved to be my foremost symptom.  I felt nauseated once, but in my case, that could have been the pregnancy!!

Though the nausea didn't prove to be an issue, I did have NO appetite.  It was easy to forget to eat, a first for me.  Nothing sounded good and I just wasn't hungry.  I had to force myself to eat.  Chemo burns through your protein. You need a lot of protein--which is hard because pregnancy is hard on your kidneys.  A high protein diet is ALSO hard on your kidneys. I need to find a balance of getting the protein I need to replace the cells being destroyed by the chemo, but not over tax my already working overtime kidneys.  I do this with no appetite by drinking spinach protein shakes every few days.  Spinach, blueberries, milk, and whey powder.  Not awesome tasting, but not that bad. I can usually get it down.

As the days went on the exhaustion slowly decreased, but a few minutes of activity and I would need to lay down.  What was unexpected was the mental exhaustion.  Emotional exhaustion is something I know I'll be facing throughout, but to be mentally exhausted--is a strange feeling.  They warn you about it, "Chemo fog," and it sounded a lot like pregnancy brain.  So now, my poor brain has 2 strikes against it--chemo and pregnancy.

Monday, December 2, I had to return to work.  Though i wasn't going into the office, I was able to telecommute, I really worried about my ability to work.  Plus--were there still symptoms to come? Or, was I over the worst of it?  No one can say.  

First Chemo

I realize I am LONG overdue for an update. My excuse is being diagnosed with breast cancer doesn't make the rest of your life stop. I am still mom to a very active fairly demanding 2 year old. I am still a wife. I still have a home and laundry.  I still have to work, though, clearly not full time.  I am still pregnant.  Juggling all these plus the side effects of chemo is difficult at best. I have much to say--but will spare you all of it in one post and will catch you up over the next few days.

Monday, November 25th, 9:00 am my first Chemo treatment. I was 18 weeks pregnant.  I was very nervous, mainly because it was a big unknown. My port was still very sore, and I was worried how that was going to feel.  And then of course, what were the medicines like.  The whole thing a mystery.  My husband and I showed up at the hospital infusion center and checked in. We were asked to take a seat in the waiting room.  We sat. We waited, not sure for who or what.  A few minutes later a wonderful nurse came out to get us.  She knew everything about me, and most importantly that it was my first time.  She was patient and answered every question I had with clear answers.  No sugar coating of the hard answers--which seems to be the protocol here.  I like it, most of the time.

I take 3 medicines.  This first treatment was a little different, as I would all the medicines in one sitting because it's Thanksgiving week.  After this, I will have two medicines at the infusion center and the 3rd will be infused over 3 days. I will wear a pump home and return 24 hours later to have it refilled.

The nurse cleaned the skin over the port.  The steri-strips and glue (instead of stitches) were still in place.  She used a solution to remove the steri-strips and sterilize the area.  Then, the needle.  I was very nervous but it hurt FAR less then getting a poke anywhere else.  I was very very happy, and figured it will only get better when the area is less sore.  Before they give you the chemo drugs they give you 2 powerful anti-nausea drugs, one of which is paired with a steroid that improves its effectiveness.  Once those are in, the chemo begins.  For no real reason I was nervous.  I know as the drug goes in it won't hurt, and I won't immediately feel the effects but it hits home.  I am starting chemo.  I have breast cancer and I am pregnant.   Its a realization I think will hit me at different moments over the coming months. I am still in shock, so wondering how this became my life?  How did I become one of those numbers? How did I become one of those pregnant with cancer?  There are a surprising number of us. Clearly we aren't the majority, but my oncologist has treated 6 pregnant women with breast cancer in the last 15 months alone.  A very high number, higher than average.  It concerns her.  But, how did I become one of those?  How is missing work day after day for different tests and different doctors appointments my new life? How is my baby? Will I be able to eat healthy enough to keep up with his/her needs?  Endless questions--most with no answer.

My husband and I decided to watch a movie as the drugs dripped in.  We watched on the I-pad.  The  nurse coming and going.  Part way through my oncologist came by to check on me.  She hadn't even finished the sentence, "How are you?" when I burst out sobbing. She walked away to give me a minute.  She came over and we talked for a few minutes.  It was nice. I am blessed with an amazing team.

Several people asked if I had gotten a second opinion, and to be honest it hadn't crossed my mind.  They were very clear about the aggressiveness of my cancer and the urgency with which i needed to start treatment.  But, I decided to ask my oncologist if I should have gotten a second opinion.  She said she did it for me. There are only a handful of oncologists in the area that treat pregnant women with cancer. They all talk about all of their cases and they all collaborate and work with MD Anderson in Texas.  It was nice to know.

Finally, 5 hours later, we were finished.  It won't take this long in the future, a lot of questions and discussions lengthened the process.  I felt fine.  Hungry. My husband and I decided to go to Olive Garden.  We had a wonderful late lunch and headed home.  It was a strange day.  Clearly a huge day in my life, but it passed so uneventfully it was strange.  That evening i was more tired then normal, but that could be stress or pregnancy.  I played with my son and we all went to bed. 

Port is in--

Well--I officially have a port.  It was by far the worst experience so far. I know--many more experiences to come.  But- - -  this sucked. They would only give me local for where I was getting cut. No anti-anxiety meds, no help you feel sleepy drugs because of my pregnancy.  It was just a horrible 45 minutes of holding my head in a weird position and trying to focus on my breathing.  I know the port is a wonderful invention that will save my arms from 1,000's of pokes and I am grateful to the people who invented it.  But, getting one put in is a horrible experience. They push, pull, and cut their way through the muscles in your chest.  You go home looking and feeling like someone punched you in the chest.  

For those of you unaware, a port is a small device implanted UNDER your skin.  It has a small catheter that feeds into a vein in your neck, then feeds to just above your heart.  It is used to infuse medicine as well as draw blood.  The picture below is the exact model I have.  The little plastic part in the middle is wear they poke the needle.   




To insert it, they make an incision then create a pocket (I have NO IDEA how that works), and insert it into the pocket and close up.  It was NOT a pleasant 45 minutes--but I am sure i have plenty of bad days ahead.  This seemed to be more of an appetizer of what is to come.  Right now what lies ahead is is all unknowns.  I am sure in a few weeks as all of these firsts are checked off my fears will abate to a large degree. There are always unknowns, but I have so many questions around how I will personally react to chemo.  All to be answered in the coming weeks and be recorded here.