Sunshine in April

First Chemo Day.  Tuesday (11/14).  We check in at the oncology center where everything is to occur.  Even though my doc is great, I am not happy being here for a second time.  I better get used to this place as I’ll be here a lot.

Genetic Counselor.  We first met with Austin, one of the genetic counselors.  He was great at explaining everything including why genetic testing was recommended.  According to his data, one in eight women over 50 get breast cancer.  Even from my undergraduate studies in Health Science Education, we learned that literally everyone will get cancer if you live long enough.  It happens to some earlier than others.  Cancer is a like a spelling error (gene mutation) in cell replication.  With the genetic link, the cells are more likely to replicate with erroneous mutations than in the general population.  However, sporadic mutations occur due to lifestyle and other environmental factors.  Often, we just don’t know why or what caused the mutation.  Thank you #8 of the Critical Thinking Guidelines that I use to help teach my classes – sometimes we just don’t know why.

Infusion area.  I am terrified.  I am not looking forward to this day.  I felt like a little kid getting into the adult chair, which I wasn’t ready for.  My port area is still a bit swollen, and since it is the first time being used, my nurse uses a bigger needle than normal.  Ouch, that pinched, but was over fast.  Before every chemo infusion, they draw blood to check a full metabolic panel and CBC w/ Differential.  This site, Understanding and Monitoring Your Blood Counts, indicates that your treatment providers need this information to know if it safe to proceed with chemo or if other measures need to take place first.  For example, if your white blood cell count is too low, you are at high risk of infection.  If your red blood cell count is too low, you are at risk of anemia.  They check liver, kidney, glucose, potassium, sodium and a whole slow of acronyms to make sure everything looks okay to proceed.  This first day, they drew extra blood for genetic testing.

Image:  Ready for chemo.  IV is ready and blood has been drawn.  My nickname for my port is my third boob and this is port pasty (thank you Christy for that reference).

Doctor.  After blood is drawn, we wait for next nurse to call us over for the doctor visit.  With doc, we talk about all of the medicine for nausea:  Four different ones, including my Lorazepam.  We go over a whole med chart of times and drugs to take when so you keep a heavy dose of nausea fighting chemicals in your system to fight the controlled poisoning chemicals.  Let’s just be clear here that I cannot take two Tylenol cold tablets at once because they make me nauseous. I have to take one every couple of hours to tolerate them.

Drug (Generic Name)

Zofran (Ondansetron):  1 every 8 hours, only one at time.  This is actually what Mikala takes for her stomach migraines, so we love this drug!  It has helped her tremendously with her nausea.

Compazine (Prochlorperazine):  1 every 6 hours.  This is also an anti-psychotic used for schizophrenia and for behavioral problems in patients with dementia, so I am covered on many levels here!

Decadron (Dexamethosone):  2 daily, first thing as this corticosteroid can also interfere with sleep.  Apparently, some of the ladies like this drug as it gives them energy (according to nurse).

Ativan (Lorazepam): – as needed.  I have a super low dose of this med as I am quite a light weight with medication.

So, we mix these all together staggering them throughout the day to deal with nausea.  Hmmm, that doesn’t sound like a good thing!  With the drug regimen, about 80% of patients don’t experience nausea.  Let’s hope for the 80%!

And, about 20% of patients have a complete response to chemo, completely shrinking the tumor.  The majority of patients have a ‘good response’, which means the tumor shrinks just not all the way.   Let’s hope for the 20%!

Another side effect is hair loss – 100%, and usually starts about 2-3 weeks after start.  UGH!

Then the next day, I’ll come back in for the day after shot.  Chemo kills quickly dividing cells – this includes cancer cells (YEAH), hair (oh, no), and bone marrow (scary).  The Adriamycin and Cytoxan (or A/C) combo is ‘dose dense’, so it is a heavy dose in one setting, which hits the bone marrow pretty hard and it often doesn’t recover for next chemo session.  So, the day after the ‘worse’ chemo, you get to come back in and have a shot called Neulasta, which enhances bone marrow production and helps keep your immune system stronger and functioning.  It only generally causes muscles aches and bone pain about 2-3 days after shot.  Oh, that sounds great.  NOT!  The Taxol is supposed to be easier as it is only one drug at a lighter dose and given weekly.  Yeah, not sure I really believe him here.  We’ll see.

After the chemo and surgery are done, we’ll do radiation, probably three weeks worth, but that will be determined after surgery.

Back to Chemo area for infusion.  Usually people attend a class on what to expect from chemo, but since we raced through everything, I did not have the opportunity to take this class; we are just thrown to the wolves without weapons.  During the infusion process, I get a visit from the pharmacist to go over meds and potential side effects to look for.  I also get a visit from the counselor on staff as you get three visits for free as part of the process.  This is my quick one on one version of part of chemo class.

For the Adriamycin, also called the little red devil (I did not learn this from the pharmacist, but from online threads), be aware that your urine may turn red for a day or two.  Also, close the toilet lid to keep contamination contained and keep pets away from drinking toxic water (my words/ interpretation).  If any irritation occurs at injection site, tell nurse ASAP.  It is caustic to the skin.  Hmmm, this doesn’t sound pleasant. I’ve changed my mind.  I’m going home.  JK.  For the cytoxan, the side effects often include poor appetite (don’t eat your favorite food) and mouth sores (use soft toothbrush).  Make sure to keep hydrated on these medications, drink at least 2-3 liters of water a day.  Geez, just float me away.

Image:  The Little Red Devil.  This small bag holds the extremely toxic Adriamycin.

For the Neulasta shot, the most common side effect is bone pain.  A dose of claritin the morning of the shot often helps there.   The purpose of this is to avoid becoming neutropenic and ending up hospitalized in a bubble. If fever goes to 100, call office, over 101, go to ER.

Sequence of infusion:  Hydration (30ish min) – very important to flush system and drink lots of water.  Anti-emetic (aka anti-nausea) called Emetrol in IV (10 min).

          PAUSE HERE.  If I had the chemo class, I would know that not only should I get the            anti-emetic in my IV bag before chemo, I should also be given a handful of anti-                  nausea pills as well.  With my nurse going on break while I was with doc, and                      another nurse helping to get me started with the hydration as the whole she-bang              is a process, the handful of anti-nausea meds before chemo was missed.  UH – OH!

The nurses have to put on blue hospital type gowns and gloves in order to handle the chemo bags.  I call it their Hazmat suit.  The A (Adriamycin) only takes 10 minutes to administer.  Some like to chew ice chips during process of this set of chemo drugs to decrease likelihood of mouth sores.  So, Grey brings me some ice chips.  Next comes the C (Cytoxan), which takes about 30 min.  Then we’re all done.  OH, but wait!  NOW I get my handful of anti-nausea meds.  The nurse was so apologetic because she knew she screwed up!  I told her that I may or may not forgive her, depending on how bad everything was…

According to nurse M, the first chemo sets the stage for future chemo, so this should be extra interesting with the screw up.  It is usually two to three days post chemo for the worst day of symptoms.  I feel weird already before I get out of the chair.  It is hard to describe, but it is like all over tingling.  My brain is foggy and words don’t come easy.  They come out all blurred.  I cannot think straight.  I have just been poisoned.  Controlled poisoning, but poisoned none-the-less.

 

Leaving chemo office.  It is after noon, not sure what time exactly, but we are hungry.  ‘Don’t eat any of your favorite foods as they may be ruined forever.’  We decide to head to McDonalds, which is only 5 minutes away.  I won’t be upset if we ruin McDonalds food.  We get to the stoplight, BAM – it hits me like a brick wall.  I’m fucking nauseous, and I’m about to puke!  Let me just tell you right now that I have a pretty high tolerance for pain, even having my daughter without any pain meds.  However, I have a low tolerance for nausea.  It is the worst thing to me as I hate puking or feeling like I am about to.  I’ll do whatever I can to avoid throwing up.

 

UP IN SMOKE!  Yes, this is a Cheech and Chong reference!   Grey reminds me that we got a marijuana vape pen for nausea. Oh, yeah, it is in my purse.  In my defense, I am not a smoker and have a hard time inhaling – it makes me cough.  I pull out this vape pen I have never used before – bad on me for not trying this out sooner – and I don’t really know how to use it.  OOOPS!  I take a HUGE drag off of this thing, start coughing and hacking, and fill the car with marijuana smoke.  Grey is laughing so hard when we pull into McDonalds, he has to park before going through drive-thru. Hahahahaha!  Hey, grandma and grandpa, you need a snack?  We’ll have 10 of everything.  Finally, we make it through our laughter and get our food.

We stop at the weed store on the way home to get Bear some meds (he has ligament disease and is sometimes in pain) and me some edibles.  Edibles are easier to tolerate than smoking, but they take 30-60 minutes to kick in, like most oral medications.  They are not the best for the RIGHT NOW nausea.  We get in the store I can barely stand in there, and I am just not making any sense.  Oh yeah, I am in a high cloud bank!  Foggy from chemotherapy and a high from a huge puff of marijuana.  I just stop talking, turn around, and go back and sit in the car with my half eaten burger.

 

At home.  I’m not sure where Grey is, but Mikala is home.  The doc kept saying to act and behave as normally as possible.  I may still be in the fog bank mentally and not making the best decision, but I walk my dog most days, and he didn’t get his morning walk, so I take him for a walk.  And, since our walks are slow with lots of sniffing (remember he has ligament disease), I call my baby sister.  I may have made it ¼ of a mile before I had to turn around.  I get back to the house, still on the phone with Sam, and sit at the table.  I’m hot.  Too hot.  I got bundled up like normal for our walk, but it was too much.  I strip down to my tank top and yoga pants.  Gotta go – off the phone I get.  I feel horrible.  So nauseous again.  OMG, I’m going to barf.

“ MIKALA!”

“MIKALA!”

“I need you to bring my vape and some crackers.”

WOW, did I just ask my 13-year old middle schooler to bring me marijuana?!  YEP.  Sure did.  So,  here I am, sitting on my deck (thankfully not raining right now), with a tank top on (anyone who knows me knows how cold natured I am) and yoga pants, vaping baby puffs (I’m learning how to work this thing), and eating crackers.  Hahahaha.  I am a hot mess!  Literally and figuratively.  Twice today, marijuana saved me from puking.  YEAH for hooked on drugs.  JK.

 

Wednesday.  UGH, I am taking my meds all day long and still nauseous.  I know that if I don’t eat, I’ll be worthless and it will make the nausea worse.  I eat small meals every few hours.  I learn the hard way over next few days and weeks that I cannot eat food that is too greasy, too heavy or to spicy.  They all give me immediate heartburn.

I take Mikala to the dentist for her appointment, get her to school, go and get my hair cut, then almost forget about my shot appointment.  OOPS.  I get back in the car and go to get my Neulasta shot.  The nurse who screwed up asked for me to be scheduled with her so she could check up on me.  Yeah, I am not happy with her even as sweet as she is.  Really, this was too much for the day after chemo.

My sister, Kristy, arrived that evening! YEAH!!  Thank you Matty for picking her, Joe and Kadence up at the airport.   She arranged her travel plans to come in earlier than originally planned.  Although I’m not able to really show it because I am so wiped out from the chemo and the emotional toll that being a cancer patient is taking on me, I am SO happy to see her.  She is not only my sister, but a best friend as well.

Image:  Red Face.  My face and chest are pretty red from some combo of one or a few of chemicals floating around my body from chemo, neulasta shot, steroids…

Thursday & Friday.  Still battling nausea. Fatigue.  Body aches.  I hurt all over.  I hate life right now;  I am so miserable.  I want to spend time and do things with my sis, but I am just too tired.  Friday is even  worse.  I am so fatigued and now I am craving red meat.  I’m not sure if I am actually battling anemia, but being on my period the week of chemo is making everything worse, I think.  I really have no reference as this is my first chemo, but it seems that way.  Kristy went and got me a steak.  So kind of her especially as her interaction at the Apple store did NOT fix the mapping app on her phone, so she got lost, but eventually made her way to the store and back.  I cooked my steak in the cast iron skillet – a little extra iron won’t hurt.  I sat and ate my steak.  Nothing else.  Just steak.

It has been an around the clock battle with the nausea.  My face and neck were red Wednesday and Thursday from either the chemo, Neulasta shot, the decadon, or a combination of everything.  My digestive system is slowed to a crawl.  I have to eat because not eating makes EVERYTHING worse for me and adds symptoms I don’t need.  Thank you borderline hypoglycemia for this.  Too long without food, I get nauseous, cannot think straight, get super irritable, then I just starting shutting down mentally and physically.  I’ve learned over time that skipping meals is never a good option for me, so I have to find a way to eat.  Small meals/ snacks every 3ish hours is tolerable.

 

Even with the well mapped out plan of anti-nausea meds, I can barely keep the nausea under control for the next few days.  And, the Zofran is giving me a headache.  Ugh!  As much as I hate smoking, the vape pen saves me from puking many times during this first week of chemo.

 

Saturday.  I’m done.  I don’t want to ever go back.  This is too much for my system.  There must be another way to battle cancer.  I’ve had enough.  I cannot handle the physical, emotional and mental pain of this.  No more chemo!  No more!

I think I scared the crap out of Grey with that talk.  He sat quietly and let me rant. Kristy looked up stuff for me to see if other options existed.  I know this is hard on everyone, not just me. It is so hard to see a loved one suffer and not really be able to do anything to help.  The physical pain is hard enough by itself.  Add on top the emotional toll and anxiety of having cancer and going through chemo.  And on top of that, the mental anguish of knowing that you will die a horrible cancer death if you don’t do anything.

On a positive note, I am starting to feel a bit better and less nauseous.  Later in the day, Kristy and I take the girls to Boom Shaka (one of those jumping / trampoline places) and Bear for a walk.  I don’t know who is happier, Bear or me.  Getting out of the house, moving around, fresh air, being able to enjoy my sister’s company.  AAAHHHH.  Much better.  Maybe I can.  Maybe.

 

By Sunday, I agree to go back through hell one more time.  But ONLY one more time.  I promise nothing beyond that!

 

Current Status:  Yesterday I completed a total of 9 of my 16 infusions.  Over halfway there – 7 weeks to go!  Monday was a ‘meh’ kind of day.  Tuesday was empowering to pass the halfway point.  I’ve got this!