Author: piecesofjoylife

I consider myself a relatively positive person.  I’ve survived some of the worst things that can happen and lived to tell about it.  But its hard right now to keep that positive outlook, to feel hope.  I made a switch to the Cancer Treatment Centers of America in Phoenix.  They have been much more integrative and holistic in dealing with my symptoms like the nausea, diarrhea, bone pain, fatigue.  Just not sure there is any way to alleviate the fatigue.  That is the worst right now.  At CTCA I have seen a whole range of specialists with more in the works. They have a team approach to dealing with cancer and the team regularly gathers to discuss the case.  Will be seeing a radiology specialist and an endocrinologist in the coming weeks.  The usual radiation treatments are five days per week for six weeks.  I have a 1.8 mm nodule in my lung they are considering biopsying after the first six runs of chemo and that is what they are aiming to eradicate with radiation.  I think I’ll do the radiation at home otherwise will have to stay in Arizona for six weeks.  That is not fun to think of.

My oncologist locally was not happy with my choice to move treatment to CTCA, but I’m not living my life to mollify her especially when we just could not keep up on top of the symptoms and side effects.  I was not getting the care I thought I should be having.

Once again, my family has been my saving grace.  Luke was here over the weekend and caught up my lawn work and he watched me sleep a lot.  God bless him. It has to be boring to watch your mom sleep and move from bed to sofa.

There is no word that properly describes just how rotten I feel right now.  Exhaustion comes to mind, fatigue.  But its much more than that.  To even consider moving my arms or getting up and walking across the room takes considerable desire and planning.  Its just not worth it most of the time.  The energy expenditure and the mental energy expenditure is so not worth it.  The fatigue is bone deep, cellular.  Chemo sucks the life energy out of you while the poison tries to kill off all the cancer cells.  It reminds me of the knight on Princess Bride (that old movie) who gets hooked up to the machine that does just that…pulls all his essence out of him and leaves him pasty and unable to even move his finger.  Add to that the constant bouts of nausea, retching, diarrhea, and deep deep bone pain that feels like someone is constantly hammering at your bones with a sledge hammer–a recipe for abject depression, fatigue and misery.

But it does get better.  Today I went into oncology and got a bag of IV fluids with potassium in it.  Will do it again on Thursday to keep me tanked up since I can’t seem to keep on top of hydration and keep feeling so wiped out.  I don’t know what chemo is supposed to do if not this.  Maybe I’m having an adverse reaction. Ha. four more to go.Each day does seem like the worst and then it does start to get a little bit better.  A little less symptoms, marginally.

Thank god for my family!  They come and keep up my lawn, do some chores that need doing, take care of me when I feel really horrible,  two rounds of the nasty chemo done–

Still recovering from the surgery and still have the drains in.  These things are miserable.  For some reason I keep putting out too much drainage to pull them yet and so deal with it.  I have to say, sometimes out of the blue I break down and have a brief cry.  Weepy these days.  Then I get myself pulled back together and keep going.  Spring is here

and the flowers are blooming–even the Lilacs are starting to show their blooms.  I really have nothing to cry about.  Life is good, things are going along as planned (mostly).  But I’m not sleeping as my mind pulls the “oh-you’re-wanting-to-sleep-lets-consider-the-world-problems-and-remember-all-the-stupid-things-you-ever-did-in-your-life” routine and I am so uncomfortable when I try to sleep that it really is hopeless.  My primary care physician refuses to give me sleeping medication or anti-anxiety medication, so I have a plan for that–I see the oncologist on Wednesday.  She gave me anti-anxiety meds last appointment before surgery so maybe she will give me sleeping medication.  I don’t know.  Maybe they think I’ll overdose myself or become dependent or some bull shit….So been drinking alcohol at times to shut my brain down (unsuccessfully) and generally cope as well as some herbal meds.  I’ve been hit twice now by oncology therapist and primary care doctor’s nurse for the whole suicide questions list nurses generally screen patients with.  For me, that seems laughable.  I’m a nurse and don’t you know that shouldn’t apply to me.  🙂

Been thinking a lot about this whole chemo thing.  It seems crazy to let them pump drugs into me to kill the cancer and at the same time the side effects could and probably will make me sick, sick, sick.  The plan is to infuse perjeta, Herceptin, taxotere, and carboplatin into my port a cath in my right chest every three weeks.  Week one I’m supposed to be very sick (nausea, vomiting, explosive diarrhea, aches, pains). Week two I’m supposed to be very fatigued/exhausted and immune compromised as I start to recover from week one.  Week three I’m supposed to feel somewhat “normal.” Maybe even work a shift or two.  And then start it all over again.  My granddaughter who is 7 years old is struggling to understand it all and worried I am going to die.  Here come the tears again.  Shit.

I could die.  Chemo complications happen.  I think I’m set for that possibility.  I believe in an after life.  I believe that when we die, our spirit or soul moves on to the next level of existence, reborn into another state and time.  I believe we learn something in each life and enjoy the beauty of life and love.  We are after all made up of the stuff of stars and universe.  I do not really believe in hell or damnation other than what we have earned in the lives we lead.  Karma. And I do not believe in heaven/eternal life for all the “chosen, good people.”  I’m a skeptic.  I believe there is a higher power guiding and nudging us and ordering the universe and evolution and all that.  If my beliefs offend some, I believe we each have to find our own way and develop our own belief systems.  You have yours.  I have mine.  No proselytizing.

I would hate to see my life end.  I love my life.  Have I been through some rotten things in my life.  Yes.  Sometime I’ll tell you about some of it.  All in all, I love my life, my family, my job, my life.  So, I’ve already made up my mind I’m going to live and that means chemo for me.  But still, I cry.

 

I am about to make the understatement of the year:  life is certainly a journey.  You know, ups and down, unexpected zigs and zags.  I had no idea what so ever six months ago I would be undertaking this particular journey.  Aside from the occasional skin cancer, no one in my family has ever had cancer and this has been completely new ground for me. So, I had my first chemo on May 16: taxotere, carboplatin, heceptin and perjeta.  A nice toxic cocktail.  It’s weird to watch that poison drip into your veins.  It was a grueling 8 hour day as they give all the first doses slowly to monitor for a reaction.  Within two days I was sick: diarrhea, nausea, and bone pain.  I also received neulasta to help my bone marrow ramp up and support my immune system and that means the bones HURT a deep ache and pain that is unrelenting.  Round the clock pain meds, nausea meds, dealing with the diarrhea……..my daughter ended up stopping at one of the pot shops and got me marijuana vapes.  We are lucky enough to live in a state where it is legal.  My good friend Tamara also had gotten me some CBD oil and ointment as well and between all of them it helped.  I have to say I am not a fan of the smell of pot.

For a couple of days I simply medicated myself and slept and cleaned myself up.  Bouts of crying, sobbing, swearing and feeling so out of control.  Now I have thrush (oral yeast infection) and external yeast infection and started on diflucan.  Cannot stomach the swish and swallow version–promptly threw it all up.

So I had a Chest CT scan and abdomen and pelvis CT with contrast before chemo started and they found some potentially worrisome nodes in my lungs.  You know, they try to spin it positive like “It could just be residual inflammation left over from your surgery.  We’ll watch it and repeat the scans in three months.” So, I put that in its own compartment and worry about it in three months.  If its metastastes then they should potentially shrink I would think….if they get bigger, then I guess adjust the chemo to get them.

I cannot believe its only been a week since the chemo.  I still do not have any energy, feel fatigued, even hard to get up the energy to do things.  So I do a little, rest a lot, do a little more.  My sister is coming for the weekend and I warned her all that I feel.  Tonight is the first night in my own home since chemo so looking forward to sleeping in my own bed.  God bless my daughter Miriam for all her help and support.  My son Luke and daughter have been life savers. Their families have been amazing.  I thank them from the bottom of my soul.

 

My son and 5 year old grand daughter were here for the weekend.  Luke helped me straighten out my yard, hauled blocks and laid them out around flower beds, filled them with dirt and planted things that I had purchased to plant in the yard.  He built me a bunny fence around my garden and we looked at the greenhouse that crashed in the last storm to see what it would take to fix.  He mowed, and weed wacked and pulled weeds until I am certain he was regretting his offer to come and help.  Still recovering from the mastectomy (both breasts) did not allow me to help much.  I hate not being able to get out there and work as hard as usual.  I DO NOT like to watch weeds grow!  That’s another thing I have learned.  Its hard for me to allow myself time to sit, heal, and rest. So far my list of lessons I am learning includes:

•  I am learning I don’t like being a patient on the receiving end of medical care.  So, I am learning humility I guess and patience.
• I don’t like NOT DOING.  It literally makes me crazy.  So, I am learning to treat myself more gently and watch the weeds grow.
• Learning to budget to a decreased financial stream–so far I’m not doing a very good job at that. Ugh.
• Family is everything.  Help has saved me.  I’m an independent woman and its hard to ask for help and to accept it.

Went to see the surgeon today for a follow-up…drains are still in as they are putting up too much output.  These crazy drains (one coming out of each boob area)  are uncomfortable.  They rub in there and pull on the sutures and generally burn some.  I guess the drains are the length of the incisions about 6 inches.  I have already been warned to take two Percocet before I have them removed and take along a chunk of rawhide to bite down on when they are pulled.  Maybe next week.  Monday is the day for an echocardiogram and the way my chest feels right now, that isn’t going to be friendly either.  But the chemo upcoming is cardio-toxic and so they need to know how well my heart is functioning……..After two marriages and the crap associated with those, I can tell you it is a WARRIOR.  On May 2 see the oncologist and set the date for chemo to start in three week cycles.  Another thing I am not thrilled about, but it must be done.  I want to live and in fact, I am going to live.

Forgot to tell you–my breast cancer is a stage 1b/2a HER 2+, Estrogen +, Progesterone +.  The lump was 2.2cm x1.8cm x1.7 cm and grade 3.  One lymph node in the breast itself was positive but the sentinel node was negative. (This damn tumor was trying really hard to spread.)  There are no good studies centered around that scenario so we are opting to not do an axillary node resection or radiation and just go forward with chemo.  There were many pre-cancerous sites in both breasts so I am glad I decided to chop those babies off.  Don’t need them anymore.  Oncologist said a year of chemo.  Not friendly at all.

 

In February we found the lump in my breast during a mammogram and I started the series of steps that diagnosed me with breast cancer.  I am one week out from bilateral mastectomy.  I know other women have said it feels surreal, like a dream or a nightmare, like it is happening to someone else.  All of those and none.  I feel like two persons.  The outer public person is trying to be strong–make a good public showing–and the inner person cries a lot.

The journey has begun.

Last November I got my first tattoo.  I searched and searched for the perfect one that would help me to define my life and future focus at this stage of my life: aged 62, single, three grown kids (but one dependent–that’s another story), nurse looking forward to retirement…..you get the picture.   I settled on dragonflies.  I thought at first that they just seemed whimsical and cute and light.  It turns out they are holdovers from ancient times and symbolize transformation and a change in perspective, maturity, depth of character, power, and poise.  Well, breast cancer is certainly about transformation and a change in perspective!

I am an Emergency Department nurse and have a certification in critical care nursing.  I cannot tell you how much I’ve seen in my career of 28 years and sometimes I think to myself ‘Rhonda, you have certainly seen it all’–and yet everyday something new jumps up.  Well, I have decided that I DO NOT like being a patient.  I feel like I’ve lost the control over my life that I have fought so many years to gain.  Being at the mercy of other nurses and doctors and tests and labs and exams and schedules is NOT for me.  But guess what?  Here I am. I guess I’m learning and transforming :).   I will definintely by developing a new depth in my character and learn new things–including feeling helpless and at the mercy of things.

This blog is my way of dealing with things and hopefully will serve as a way I can help other women to deal with similar situations.  This is a story about my journey. Transformations.

New beginnings are often disguised as painful endings or life changing upheavals.

 

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton