Dr. StrangeRaj or: How I Learned to Stop Worrying and Love the Chemo

Apologies to Dr. Raj for the title, but I think it's pretty clever. hehe.

I like to think that I am a pretty attuned/in-tune person with my surroundings and what is going on with my body.  It is an important part of being healthy to really listen to what your body is telling you.  If your back is hurting, or your shoulder is sore, what is the cause of it?  Don’t just pop an aspirin and continue on.  There is a cause to the problem and the aspirin is just masking the pain, not creating a solution.  Some sort of activity or action caused that pain and if you can figure out what it was, you can figure out a way to correct it.  Something as simple as the way you are sitting or standing can cause your body to be unbalanced. It is a healthy thing to learn to be conscious of your body in space.  The Alexander Technique we learned in massage school was about sensing your body in space and making these small adjustments in the way you carry yourself to be become as balanced as possible…literally making sure everything is lined up and stacked properly.  And it all starts with the feet, not the head.  Ladies…those high heels, don’t make me tell you again… =)  That is the step of noticing your body structurally. 

There is also the process of being conscious of your body’s internal workings.  Most of us are lucky to go through our days never thinking about this because our innards are doing just what they are supposed to do.  Heart beating…check!  Liver filtering…check!  Kidneys…kidney-ing…check!  But when something does go out of whack…a stomach ache, rash, cough, an infection, that is when we become aware.  Well, that brings me back to the ‘purpose’ of this blog here.  The thing about having poisonous chemicals pumping through your bloodstream is chemotherapy makes you HYPER-aware of what is going on inside of you. 

Chemo is one of the treatments for cancer.  It refers to the drug cocktail (as the drugs are almost always administered in a group of at least two, but more likely 4 or more) that attacks fast growing cells, like malignant cancer cells, but your body has naturally fast growing good cells too, like hair follicles, mucosa  and blood cells.  Those good cells getting put under attack causes the side effects felt from chemo.  I really was not prepared for these side effects.  I read all my literature, but did have the misconception that the worst side effects would be during the first few days and then improve up until the next treatment.  Boy was I in for a surprise on day 7 following treatment.  Before I get into the nasty stuff, I’ll tell you that now, on day 12, I am feeling VERY good and all of the side effects I experienced ARE TYPICAL.  Day 15 is just around the corner with another treatment and another round of recovery, but I am much better prepared mentally. 

So here it goes…

Thursday, June 16^th.  Day 1 on my first cycle of treatment (there will be a future post about my specific chemo, which is called ABVD, for the 4 different drugs I get, but I have to rant with that a drug shortage in this country and that’ll be a long one too, so stay tuned).  I get to AGH at 8:45 a.m.  Brandon, my Mom and Dad come with me.  Nurses Beth and Zarah are taking care of my treatment for today.  Now, it was just 3 days ago that I got my Power Port put in, and I was really worried that it would hurt badly when they accessed it, but I swear, I didn’t even feel a thing!  In my anticipation of pain however, I may have crushed a couple of Brandon’s fingers.  They drew some blood and ran some tests to check my levels before starting.  All looked good so the drugs were underway! 

1 treatment down!

It was a pretty boring process all things considered.  Just hanging out, getting a few drugs via IV push, and the others via a drip.  I was done around 1:00 pm.  Immediate side effects were a reddish urine from the A, as the drug is bright red.  Sadly, I did not get a taste of Hawaiian Punch while it coursed through my veins.  Going to the bathroom smelled very medicinal.  It reminded me of the smell of being in a veterinary clinic.  The rest of the day was uneventful, but I got very tired around 4 o’clock.  I took a nap for a couple hours and felt well enough to meet some friends.  I enjoyed several glasses of water (drink up people!) while they had their wine and beers.  My Dr. advised that alcohol can speed up the chemo through the body and recommended against it.  I also figure my liver has enough to do right now, I don’t need to give it one more (albeit familiar) substance to deal with.  Only felt a little queasy that night after I got home and had a small snack.  No vomiting.

Friday Day 2, I had to go back to AGH today to receive a shot of Neulasta.  This was a quick shot in the arm, and activates the bone marrow to create more blood cells, to replace the ones the chemo is killing off.  Again, by 4 o’clock I was completely exhausted.  I also noticed that today water tasted sweet.  Did not have much of an appetite this day.  Day 3, the metallic taste in my mouth remained.  The only thing that was appealing was salty…to battle the sweet taste.  Salsa and tortilla chips to the rescue.  Day 4, the sore mouth began.  Water tasted normal again, however it was a battle of will to put anything in my mouth or swallow.  The initial sting was pretty awful, like if you squeezed lemon juice on a cut, except it’s your entire mouth.  All the gums, under the tongue and down the throat a little too.  Ice cream and popsicles were the choice food here for the next couple of days.  Fatigue persisted all weekend.  I guess the sore mouth let up around day 6, Tuesday.  I also have some peripheral neuropathy, which is numbness in the fingertips, and can affect toes too.  So far, just the fingers and it kinda feels like they are very pickled from being in the water a long time.  I can still button buttons, so it’s not too bad.

Day 7, Wednesday.  I felt like CRAP in the morning.  I decided to go to work late, because I was a bit disorganized and just wanted to get a few things cleared up and then get back to bed.  Big mistake.  I got to work and made it about an hour before I felt like I was about to pass out.  Just sitting at my desk and then I get dizzy, cold sweats, and clammy hands.  My co-worker Sean walked me down to the doctor’s office downstairs.  My normal BP is 110/70.  It was 96/52.   So my step-mom Penny and Aunt Mary came by and took me home.  Spent the rest of the day in bed.  Which was a good thing…because the Neulasta kicked in and let me tell you what…worst pain I have ever experienced.  Granted, I have not given birth to a baby, nor had a broken bone.  But OMG.  It really is having ‘growing pains’.  Again, the Neulasta activates the bone marrow.  It feels like your bones want to jump out of your skin, but just this aching pain radiates down each of arm and leg and through my pelvic bone.  Due to the sore mouth, I was monitoring for a fever (due to the previous sore mouth, and a current aching jaw not related to the Neulasta, was monitoring for a possible fungal infection), so I couldn’t take any pain medication.  I was up literally all night, checking for a fever, and just unable to sleep because of the pain.  When no fever was present at 5 a.m. I finally took an Ibuprofen and went to sleep for a couple hours.  After my issue the day before I was already scheduled to go in, a day early, for my blood work follow up.  Brandon, having slept as little as I did, took the day off and drove me in to AGH.  My blood work looked good, there didn’t seem to be any mouth infection, and they gave me a Rx for the pain, but now that I was able to take ibuprofen, that helped alleviate most of the pain.  That and Claritin-the antihistamine properties help somehow.  No studies on this, but other patients have found it to help.  Cool!  Day 9, the bone pain was just more achy, but I still felt very twitchy. I went wig shopping that night too.  Checked out a place in Sewickley and found a cute bob style that I liked.  Have a few other appointments at other places this week.  Constipation like you would not BELIEVE.  Yep people, sharing it all.  I started taking some fiber gummies and that seems to be helping.  

The weekend was a very good weekend.  Lovely weather and I felt very good, aside from a bit of fatigue.  I did notice last night that I have red bumps on my right chest, shoulder and back of my neck. I think that is also from the Neulasta.   As far as the hair loss goes, I do notice that my scalp is a little more tender.  My hair is duller and I’m not really loosing hair at this point, but sometimes when I run my fingers through my hair, a piece or two will break off (where you don’t see the root follicle at the end) and that is new, as I always had very thick strong hair.  I was told day 15 is when the hair loss usually begins, and once I wake up with it on the pillow, it’s time to get the shave, to avoid any weird patchiness.  The plus side is it’s summatime and I won’t be needing to worry about shaving my legs ;)

So, here I am (CURRENT FINALLY), Day 12.  I went to work and am feeling very good.  My cough is GONE and I no longer get out of breath going up a flight of stairs.  As I was saying at the beginning of all of this, every little ache, pain, awkwardness…I notice.  It is very easy to become paranoid that something is wrong, but when a new side effect would pop up, I would just re-read my literature on the chemo and the Neulasta and find that it was common and when it got really bad (like day 7) I called my doctor and they told me just what to do and look for, to make sure what I was experiencing was normal.  I am trying to keep my body as healthy as possible and will be taking walks and doing some light yoga and Thai Chi to keep my energy flowing.  Drinking lots of water…need to add in a few more veggies, though.

Thank you to the wonderful people I have supporting me through this.  The love, prayers and words of encouragement mean so much.  You are all amazing! 

Score:  Team Emily-1, the Hodge-0.