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!