Sunshine in April

Off Week.  The week in between my first and second chemo infusions was pretty mellow, even considering Thanksgiving.  My stepkids and their spouses were great at stepping in and taking over most of the dishes (I usually cook the Turkey and a couple of side dishes).  The turkey, mashed potatoes, sweet potato casserole… you get it – it was a delicious Thanksgiving meal – thank you Lacy, Matt, Marc, Ashley and Carmen!   The day was made even more special with my sister in town.  It was my first actual Thanksgiving with my side of the family in over a decade.  Some much needed positives after that first traumatic chemo infusion.

And, traumatic it was.  I started getting anxiety the day after Thanksgiving.  That’s when the reminder call for the upcoming chemo infusion appointment comes in.  Thankfully, and not so thankfully, I was a bit distracted by that Friday being my sister’s last day in town.  Kristy, Kadence, Joe, Grey, Mikala and I had a great family style dinner at the Lucky Dragon.  Then we said our tearful goodbyes at the airport for their red eye departure.  So sad to see my sissy go and not have my sisters and extended family here to give me hugs, entertain me with visits and make me laugh.  Being far away from them has made so much so hard for a long time.  This jacked up Back to the Future roller coaster ride is much more daunting without them.

Weekend & Monday.  I really don’t remember this weekend nor do I have notes about it.  Knowing myself, I am sure I tried to stay strong and not admit or cave into the anxiety that was there.  Grey was probably worried about me checking in to see how I was doing.  He’s been great about that and making sure I am as okay as can be expected.

Tuesday, 11/28. UGH!  Did it have to come so soon?!  I want to run far far away in the opposite direction of the oncology center, but alas, I stay true to my commitment of ONE MORE TIME and walk in the door.

Infusion area.  In the infusion area there are 6 pods with four recliners each in their own ‘corner’ of the section.  It is a larger L shaped area with the front desk area when you walk in, a long walkway with four pods on one side and a nurse’s desk and the pharmacy on the other side.  Around the corner of the L (the small leg) are the back two pods.  At the end of the hall, opposite end of the nurse’s desk, is a snack station.  In the fridge, you have a choice of pudding – vanilla or chocolate, soft drinks, or juice.  Beside the fridge, you have a choice of some dried goodies, including chips, cheese and crackers, or other snack mixed.  These are all free to patients and their companions.

I got the same infusion area – pod 1 with a different nurse.  The nurses do not have a set pod and they are in different pods each time.  Uh -oh, the first blood draw was not good.  Sometimes people have problems with ports not working for whatever reason, and a few even have to go in for a new port.  It was only a small issue and everything worked well with the next blood draw.  WHEW!  At my first infusion, the nurse mentioned lidocaine.  If you lop a pile of lidocaine goo on the area about 90 minutes before being poked, it decreased the pin prick pain.  When I get it on in time, I don’t even feel the prick.  Today, I only felt a mild needle poke before she drew blood.

Genetic Counselor.  After the blood draw, we went to see the genetic counselor about the genetic test results.  YEAH, no BRCA gene!  That saves the ovaries from being yanked out.  If you are positive for one of the BRCA genes (BRCA1 or BRCA 2), you are at a much higher risk of breast cancer and a higher risk of ovarian cancer as well.  I did, however, have one blip on a lesser studied gene that may be linked to a slightly higher risk of breast, colon and pancreatic cancer.  Right now it has ‘uncertain clinical significance’ with ‘insufficient data if these variants cause increased cancer risk.’  Genes that have been linked to different cancers have been added to the list over time.  Testing can be done on all of these genes, but some of the newer ones added to the list are not as well researched as the BRCA genes.  It is possible to be retested in a few years when maybe more is known about these other genetic links to cancer.

Doctor.  After the genetic testing results, we see the oncologist.  We talk about the side effects of the first round of A/C and are going to try a different anti-nausea med (Kytril) in place of the Zofran, which gives me headaches. I ask the few Qs I have, and we discuss management of the side effects.  He checks the bloodwork and gives the okay for today’s infusion.  The one time you want your blood work to be bad so you don’t have to have treatment.  Oh, well, I guess it is good that we don’t have to wait and can stay on track for these 5 months of chemo.

Back to infusion for round 2.  I know the protocol now and that I am supposed to get a handful of anti-nausea meds pre-chemo.   I watch to make sure this step is not forgotten this time.  No worries – this nurse is on top of everything.  Grey and I hang out with some small interactions with others in the chemo area.  I have not taken the best notes on the weekly interactions with other patients, at least not in the early rounds, but each week, we are in with up to 3 others in our pod receiving infusions of some sort.   Most, but not all are chemotherapy patient.  Some are receiving infusions of iron or other compounds that their bodies need.  When the chemo is finished, I don’t feel quite as foggy as the first time, though it is still challenging to find the right words and get them out so others understand what I’m saying.

Two chemos down, only 14 more to go!  Let the nausea battle begin…

The nausea is still bad at times, but doesn’t seem as intense as the after the first chemo.  I do know better than to try and walk Bear today.  My insurance company denied my prescription for the Kytril, so I am stuck with the Zofran (ondansetron) to mix in as needed (remember, it is a full drug cocktail of this, that and the other to keep the nausea under control).   I keep my vape pen by my side for the baby puffs that help take away the nausea very quickly – within a minute or two.  The sluggish stomach woes continue as does the ‘chemo hot’.  I call it chemo hot because I am constantly warm.  I walk around in a tank top.  I’m a 70+ / fair weather woman who does not like the cold.  For probably the first time in my life, I am appreciating the cold and step outside into the cold air frequently in order to cool down.  The hot also contributes to some of the nausea for me.  Realistic or not, I am truly afraid that if I start puking, I will not stop; That I will be dry heaving, praying to the porcelain god for mercy, then lying on the bathroom floor trying to recover for the next round.

Wednesday.  Are you flipping kidding me?!  I started my period today.  It’s only been two weeks since the last one and the chemo was supposed to induce medical menopause, taking away my periods, not having the opposite effect of doubling them!  On top of this, my eyes are super tired and watery /itchy.

As I shower, getting ready to go in for my day after chemo Neulasta shot, my hair starts falling out.  So much hair.  Coming out in clumps.  I have thin hair already and have tried those shampoos that promote hair growth.  When you stop using those (forgot to take it on vacation – oops), you quickly lose the benefits and the extra growth induced hair starts falling out.  This is different!  It is hard to describe, but my head tingles after infusions like something is going on under the scalp.  That something is probably the hair cells crying for mercy as they die a slow chemo infused death…  I knew this was coming, and I do NOT like it.

To decrease the potential for hair loss, some will opt to wear a cold cap or scalp cooling system (cryotherapy) for chemotherapy to induce a bit of scalp hypothermia.  The idea is that these are supposed to decrease the blood flow to the head and keep the chemo from impacting the scalp and the hair molecules.  It also is quite the process as you need to keep your scalp cooled before, during and after chemo.  The scalp need to be lowered and maintained at a cooler temperature through treatment.  You will need to either change batteries to keep everything cooled or be plugged into some refrigeration type contraption.  Or, the cheap version is to keep switching out ice packs on your head.  These systems are considered ‘highly’ effective in around 50-65% of users.

Why not try one of these?  I did check out info on these and the systems run roughly about $400 a month.  They also often cause headaches – remember those ice cream headaches when you eat cold stuff too fast?  Did I mention how much I hate being cold?!  The thought of an ice pack covering my head for three to four HOURS one time, let alone 16 times, sounds like torture, even more so than going bald.  And there’s a chance it won’t work.  When it does work, it saves just over ½ of the hair.  So, I’d still look like I had stringy, even more thin hair with all of that work, expenses and torture.  No thank you.  I’ll stick to chewing my ice chips during the A – that’s all the cold I can handle.

Thursday.  OMG, the vape pen made me nauseous.  WTF?!  This is my quick saving grace for the nausea, and now it just made me want to puke.  This is NOT good.  And, more hair is falling out.

Friday.  More hair gone.  It is getting all over everything – my clothes, the couch, the pillow…

Saturday.  I’m done with the hair falling out.  Grey is working today, so I lean over the laundry room sink and buzz clip my head.  GI Jane bitches!  That’s the thought that I say out loud as I am shaving.  I use the ¾ inch clippers then go back and use the ½ inch ones.  I am afraid to use a razor or no guard as I am not a skilled barber and don’t want to cut myself.  I have very mild anemia (from blood work), which makes it harder to clot and heal.  Thankfully, my bald head isn’t so bad.

Sunday.  My head still feels weird and tingly, so I ask Grey to help me out and shave my head without the guard on.  That way we can get is as close as possible and hopefully stop some of the discomfort.

Parts of me:  I was fully aware that hair loss was coming and visited Judy’s Intimate Apparel before starting chemotherapy to try and find a hat that works for when I go bald.  I was told this business originally started to help women going through breast cancer find prosthetics and apparel for going through breast cancer lumpectomies and mastectomies.  The sweet clerk gave me two baskets of headwear and put me in a dressing room so I could try them on in private.  Before I could get too far, I just sat in there and cried.  No, it is not ‘just hair’.  No, they are not ‘just boobs’.  These are parts of your body.  Parts of my body.  They are pieces of who you are.  Who I am.  It feels as though my body has betrayed me, and I am losing pieces of who I am.

Current:  I am more than ready to be done with chemo!  I have completed ten infusions and have six to go.  I am ready for food to taste normal again.  To regrow hair.  To be on the side where I can say I HAD cancer, not still have a tumor in my body.  I am now losing my eyelashes and eyebrows as well.  Yet, still overall, I continue to tolerate these weekly rounds of Taxol much better than the four A/C infusions.   It was a snowy blustery morning and early afternoon today.  Now, as I finish up before posting, I can see blue skies and sunshine calling me to come outside for a walk…