Sunshine in April

Off week.  The side effects mostly subside during the off week as my body recovers from the poisoning.  I start calling the A/C chemo the voluntary flu as that is the closest descriptor of what it feels like.  It takes you down for the better part of a week like you’ve been hit by a semi, then you slowly feel better as you recover.

Food Fairies.  I really do not know how I would be making it through this process without Erica and the food fairies, at least that is what I call them.  They are my magical wonderful creatures who bring food once or twice a week (Wednesdays and Fridays).  As someone who does NOT like cooking and is going through chemo hell, this definitely helps me feel super loved and cared for.  And HOLY COW are these fairies amazing cooks.  Even more of a bonus, I get time with friends who I have not seen in a while since transitioning to teaching solely online.  Food Fairy Erica is numero uno, in more ways than I can count.  She has put together this meal chart for friends to sign up and bring food.  Erica is an amazing cook, and I always enjoy her delicious and healthy meals.  Gerard and Katrina bring meals between round two and three, and yes, they are as great at cooking as Erica.  YUMMY!

In addition to eating the wonderful food brought by the food fairies, I am craving high calorie / dense foods that I don’t normally eat.  A big pile of ice cream?  YEP.  Chocolate milk?  YEP.  Steak and red meat?  YEP.  A side effect of chemo is a metallic taste (it really is more of a chemical taste) that will slowly get worse over time.  I can still taste most things right now, though it is somewhat altered.  A few foods I cannot taste or taste horrible.  So, even though I am struggling with eating during chemo week, I am making up for it during the off week.  I LOVE to eat – my joke is that I exercise just so I can eat more –  so I am eating, even if it doesn’t taste quite right.

People Stare.  I am a bald woman in my 40s and people stare.  I have a few different types of headwear, but I mostly like wearing beanies.  They are easy to take on and off with my hot / cold cycles and they cover most of my baldness.  It is fairly obvious that I don’t have any hair under the beanie.  The Tuesday after I shaved my head, I dropped Mikala off at her tutoring appointment and went into Safeway for groceries.  This was my first time out with my baldness, so I am a bit self-conscious about it and notice more than normal.  I catch people’s eyes multiple times and they quickly look away.  Yep, busted.  I calm myself and continue shopping.  I see a lady in the pharmacy line wearing her hijab, a headscarf that covers the head and neck worn by some Muslim women.  I remember being taken aback the first few times seeing women in public wearing these.  The hijab is not part of our modern cultural or religious norms so many people have negative reactions and stimgas associated with wearing one.  It really is hard not to stare.  I have a new empathy for these ladies as I try to go about my business and not think of how many people are looking at me.

Saturday.  We have Grey’s work Christmas party; something I look forward to every year.  We’re talking about a bunch of construction workers and spouses at a swanky country club with an open bar.  Entertainment at it’s finest! 😉  We have a great time with friends, laughing, joking and catching up with the wives I don’t get to see very often because they all live well north of us.  I am quite anxious about going to a dress up party with my bald self, so I practice tying one style of an Ankara Head Scarf over and over until I get it.  I would like to thank the African and African American ladies who have been wearing these mostly fashion accessories for many years in the states, allowing me to feel a bit less self-conscious.   I still get a few stares from some, but mostly I am greeted by so many with warmth and hugs.  It was a wonderful evening.

Image:  Grey and me at party sitting by the great trio of musicians.  I have a mouthful of food in the pic – oops!

Sunday.  Mikala was in my bathroom doing whatever 13 year olds do in there.  Of course, she likes mom’s bathroom because I have stuff she can get into.  Make up, hair products, a big mirror for her to check herself out in…  The child loves products, fashion, and more importantly herself.  I am glad she likes herself and doesn’t seem to have hang ups about not being ‘good enough’ in any way.  YEAH for that.  Anyway, I come into my bathroom to get ready for bed, and I just start crying.  I couldn’t stop.  She’s not used to seeing mom like that in uncontrolled grief, and my behavior scared her.  She was not sure what to do, what to say, how to react.  I could see the fear and indecision in her face.  I think she just wanted to escape!  Me, too, kid – I’d love to escape this.  I told her I was sorry for breaking down and not being able to stop, and that she could go.  I’m not positive, but I think she ran out as fast as she could. 😉

I don’t remember how much I’ve written about Mikala, but she has been pretty even keel through this.  Her words to me:  “You said you’re going to live, so why should I be worried?  I’m not the one who has cancer.”  That’s my kid, sounding like her dad!  I didn’t realize this until later, but when I told her I had cancer, she thought it would be surgery and that was it.  One day before starting chemotherapy, we were talking about treatment and she realized it was going to be much more than just surgery.   Little did she realize what the C word really brings.

Monday.  I am so stressed out, but we get into these habits that we do not realize we have.  I don’t know why I don’t think to take my anti-anxiety meds, even though Grey mentioned and gently* encouraged it.  (*Poor guy’s wife is a basket case at times being more than a bit reactive with no filter…)  I guess my status quo is to just stick it out.  Keep plowing through.  I got caught up in this negative downward spiral and forgot to remind myself that I am working on a new normal, and I do not have to ‘just stick it out’.  I can just stop, feel and process.  I don’t have to ‘suck it up’ and keep moving forward.  I have a medical intervention to help with the times when severe anxiety rears it’s ugly head, and it is okay to use it.

Grey is such a great support and is trying to help when offering advice to take my anti-anxiety meds.  He actually prefers I use the marijuana because it is less toxic to my system than taking more meds.  And, let’s face it, my liver is getting a serious work over with this controlled poisoning.  Either way, I felt like he was trying to control me and tell me what to do.  I do not respond well to being told what to do or feeling like someone else is trying to control me.  Logically, I know he is trying to help in offering solutions to my anxiety issues.  He also has no control over this, so what he can control is his support and ideas on how to help, especially when I am being stubborn.  I am so thankful he is even keel and not letting my emotional reasoning and reactions trigger a fight.

The reality is that cancer and the chemotherapy control my life right now.  Almost everything is about cancer.  Treatment has taken over my life.  I am not able to be my normal self or do my normal things.  I am too fucking tired.  I hate this.  I was fine.  Then I became a cancer patient.  I went from fine to fucked up in such a short time it made my head spin.  I was told by my Aunt who has been through this that I would have days where I just needed to take a break.  I would need to check out, maybe just stay in my room.  That I needed to cry whenever the urge arose because holding on to it and holding it in would make it worse. Thank you SO MUCH, Aunt Dianne, for all the help, advice and encouragement through this process.  I know she is not reading this blog because it is too much like reliving the nightmare she went through – a very similar chemo protocol to mine.  Writing this is hard at times because I relive the A/C nightmare.  Maybe I should see the counselor!  We have 3 free sessions with an therapist who specializes in cancer patient care.  Time to call her?

Tuesday, chemo round 3.  12/12.  Erica takes me to chemo, and Grey goes to work.  I think he’d rather be with me, but I don’t realize this until later.  She is a great note taker and takes over the note taking role for me today.  My white blood cell count is at 21,000!  The normal range is between 4,500 and 11,000 per microliter.  I am a little over that thanks to the Neulasta shot.  It shows that it is definitely working to prevent the chemo from putting me at risk for neutropenia.  The pre-chemo metabolic panel, which checks multiple organ functioning, and the complete blood count with differential (CBC w/ differential), which checks  blood and immune system functioning, is done each week to make sure they can dose me again with more poison.  Apparently, I am tolerating this pretty well according to my blood work.  Something good, right?!.  We are halfway through the A/C and discussed the upcoming Taxol infusions.  I will not need the Neulasta shot with those, only w/ A/C.  The taxol infusions will be one drug, once a week and with a lighter dose.  It is much easier to tolerate with fewer acute side effects, so they say – I will believe them when I experience it.  I have my doubts…  My oncologist was surprised that I had a second period with the second A/C infusion.  For most women my age, it sends them into medical menopause.  The steroids may be changing my hormones, and will probably stop my cycles.  We discussed battling the mouth sores and he prescribed some magic / miracle mouthwash (it contains some steroids, anti-fungals, lidocaine).  We discussed other issues as well and ways to treat these unpleasant side effects.  I’ll leave it at significant issues with constipation. You can fill in the rest…

I asked about risk for other cancers, because hey, I didn’t think I’d be dealing with breast cancer at 47, so now I’m wondering what other cancers are going to invade my body.  He does not think I am at a heightened risk for other cancers, especially per BRCA gene testing.  However, the chemotherapy sequence that I am doing does put me at a higher risk for leukemia.  Because of this, we will be checking my blood every six months and watching for excessive tiredness in the years to come.  In addition, because I got cancer at a young age, it is important that I have regular pap smears, colonoscopies and mammograms.

Image:  At chemo #3, trying to stay positive.

Later that day, Tracy from Seattle Care Cancer Alliance called to check in.  Since they have my referral for a second opinion, she will call periodically to see where I am in the chemotherapy process.  When I am done with chemotherapy, I will go to them and discuss surgery options (lumpectomy versus mastectomy), radiation (with lumpectomy – not needed with mastectomy), and long term systemic treatment for prevention (i.e. take pill for 5ish years to prevent recurrence).  She will call back in a month or so to check on progress.

Wednesday.  I sure do miss my coffee during chemo week.  It tastes disgusting and bitter.  Then by late weekend, it tastes great, but I do have to cool it down with ice as I am not able to tolerate hot foods or liquids.  Right now, I am eating room temp meals only.  Anything more is too much.  I continue battling heartburn if I eat too much or anything with even mild spice.  With the food fairies coming to my rescue, I can tolerate the taste changes so far.  The biggest downside is that I cannot eat my favorite foods – i.e. hot and spicy.  They hurt.  Even ketchup is spicy.  WTF?!  Ketchup is NOT spicy.  Unless you’re me on A/C chemo.  Then it is inedible. Food Fairy Mary brings homemade chicken noodle soup.  I am struggling to taste some foods, but I can taste these enough to know how good they are.  Plus, Grey and Mikala are dive bombing the homemade chicken noodle soup.

Thursday AND Friday.  Again, the worst days.  I hate life!  My whole body aches.  I am so sore during this time that I don’t even like being touched.  Thursday, I take small amounts of edibles (about 5 mg) every few hours and try to sleep most of the day away.  Grey asked me why I thought I had to tough it out and why didn’t I just take something so I could sleep all day. What an idea!  It worked pretty well to get though the worst day of the week, which is Thursday.  Friday was a bit better, but still somewhat miserable.  Saturday, I do start feeling better.  The whole body aches have downgraded to just the left ankle and knee.  The achiness and bone pain is most likely a side effect of the neulasta.

On Saturday, I am able to take Bear for a little walk.  My poor dog is missing his walks.  I feel detached from my body, like it is not mine.  food fairies come most on Wednesdays and Fridays, and even though I am fatigued I look forward to the visit with Erica, who I think I need to start calling Superwoman!

Image:  Two of our trio of critters / brothers.  Bear and Zuko.

Current Status.  Tomorrow I have round nine of the Taxol.  This will be my 13th infusion.  Geez, I’m officially a teenager now in ‘chemo years’!  I will have three more to go after that.  I am starting to feel more of the cumulative effects with Fridays being the most taxing with side effects, especially fatigue.  In spite of that, I am still living life.  We went to Emerald City Comicon on Saturday and had a great time.  At least this is the place where people are meant to stare with so many great costumes to look at and a few tv stars to meet.