More not so fun stuff

My doctor postponed my  chemo sessions this week – my white blood cell count is lower than it should be.  Just so I don’t feel left out, he prescribed some shots in a series to boost my body into making white blood cells.

Now, if you know me, I went straight to the internet and looked up the drug – shouldn’t have done that.  Really, do they have to list ALL the side effects?  Exploding spleen, extreme bone pain, fever, oh do not let me go on.  But so far, so good.  And as they say (and DID say thins morning), we have a pill for that – well, maybe not the spleen thing, but everything else is covered.

This injection was in a new part of oncology where I hadn’t been before – halls of rooms filled with pouches of undetermined stuff – IV stands – names I could not pronounce – everyone is so nice there – but I get curious about what they are doing.  I have the right.

But the bright part was I finally found a book in the free cancer patient take a book home library.  I read the first chapter when Mike was in Target getting some stuff – I waited in the car.  Stunning mystery from the get-go.  Let the side effects come on in – I have a new book to read – a REAL-HOLD-IN-THE-HAND book.

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Fun and some not so fun stuff

I’ve been doing some traveling – we went to IKEA, had wonderful Swedish meatballs, great “stuff” (yes, I do need that sheepskin rug…Winter is Coming), to the Sacramento Food Co-op, to the Lincoln Beerman Plaza to see murals and finally to the Sunshine Deli and the Folsom Sanctuary Zoo.  Phew!  I slept all day yesterday – we spread those visits over a week and I still was tired.  But that is ok – that are what beds are for – nice restful sleep.

Go to the Sacramento Co-op – prices are a bit scary for those of us not members, but it’s better than Whole Foods for selection of good healthy foods.  We bought some non-gluten bread and some non-dairy ice cream (yes, there is Coconut Milk Chocolate in my fridge).

Not so fun?  I woke up to losing my hair – strands and strands until they formed a nice little bird’s nest.  (no, I am not putting that out there in the tress).  I never liked my hair – my sister and brothers’ hair is jet black and thick – mine, brown and thin – never really liked it until I grew it long in the 60s – just pull it back and wear a hat.  When Joe died, I was in menopause and the stress made it thinner and thinner.

I was always embarrassed by my hair – it’s getting back at me through the cancer drugs.  Being it wasn’t falling out, I was hoping I’d be “saved” but sadly no.  Bring on the hats – knit hats, Amish straw hats, apache bands – or maybe I should shave it with a big C on the side and back.  I have wigs also – they are hot in the summer, but Winter is Coming.  What I don’t like about them is that they are wonderfully thick, brilliant color – youthful bounce and then there is this face – 71+- drying out and wrinkled – I earned every one, so I am not complaining – just sad that an era is passing.  Some people say it grows back – in what kind of time frame?  oh, bother – does it matter?  I have my hats.

Genetics

I had a telephone appointment with Genetics at Kaiser this morning.  I wanted to ask all of my relatives in the cousin range if they have had some sort of cancer.  Father and mother’s side for me – so if you’ve had some cancer, please let me know and I can let the genetics people know.

I have a rare cancer and they are interested in it being hereditary – they don’t know of course, but they are looking into it.  I have an endocrine endometrial carcinoma cancer.  It usually presents in the lung, but in mine, it was in the uterus.

I gave them the run down on my Mom’s sisters and brothers, but I didn’t know if any cousins had cancer.  Let me know – maybe we can help out future generations.  All confidential – send to jan.lopez@gmail.com

Thanks!

Bowels and other things

Just kidding – for those of you still reading, I had a good weekend – getting stronger – having an appetite! – walking and I had some great visitors.

My friend, Gretchen, came up to visit.  We sat out on the patio in the breeze talking – it is amazing the small stuff that becomes most important in your life.  Gretchen is my goddess who typed my first term paper when I went back to college when I was 40.  Nervous as hell, hoping I could make the cut – I didn’t have a typewriter when my first paper became due.  Only one of the things she’s done for me over the years.  When Joe died, she stepped in and handled bank stuff, legal papers, etc.  She is a giving person and it felt good to be in her company again.

On sunday, David and Joyce came over – bringing food!!!  I’ve entered a phase when food does make a difference for energy and survival.  I seem to be tolerating the treatment pretty well – so now in between sessions, I need to build up my immune system.  And Joyce has been working on recipes that taste good and with good stuff in them – you start missing all your favorites, like sweets and breads – and chemo changes how you taste too.  So Joyce came up with some really excellent pumpkin breads and apple muffins.  We are working on getting a schedule going for dinners too.

I made a card for Uncle Ed too.  Today I am going to a meeting about palliative care.  Just to see what options are there when and if I need them.  Doing pretty good right now – as long as I stay in the Be Here Now range.  Good advice no matter what.

Through it all of it is my sister, making tea, patting me on the head and giggling about absolutely nothing – exactly what I need when I need it.

Day three

One word:  fatigue.  I even slept under a heated blanket for most of the time while getting the medicine.  I imagine this is one of the side effects.  Body is trying to repair itself.  Sorry body, but you shouldn’t have let that cancer in.

My surprise team member, my sister, Donna, was here today to get me through.  It is so great to have her here – we can giggle – when I am not exhausted.  and everyone needs a giggles.

Mike’s been great, making sure I have my proper meds, the right food on time and just all around great guy – but you knew all that.  I heard from some people this week.  Scott Forrest sent me a photo of a cheese steak Mike and I ate when we were in Claymont, DE.  If that didn’t kick-start my appetite, nothing will!  Thanks for the thought.

short piece tonight still tired.  Sweet dreams everyone and don’t forget to find the moon and thank her.

Day Two

Another ride to Roseville, full of wonder and mystery – well wondering if I can make it through the cold room and the mystery?  would all this extra medicine make me feel in a way I don’t want to – like throwing up in front of the staff – or ON the staff.

Different room today, smaller number of chairs, but still a busy place.  All of us along on this journey in various stages.  But you know what, for the first time, my inclination to want to talk about it to people is put on hold.  There is real dignity in this room and with these staffers.  All against something that chose us.

I only had one med today, but it took an hour. Along with the saline drip, add another 20 minutes.  I was anxious again.  My pain in my leg was acting up again, making me twitchy.  Nothing happened.  Just waiting for the drip – and I was getting tired.  So when the buzzer shouted that the time was over, I was relieved.  One more day and then a 21 days off – and the side effects would show up.  so far, I am doing okay.

I came home and took a nap.  A nice long nap punctuated by trips to the bathroom (whoa, little too much info there!) – Facing tomorrow with reinforcements!  Surprise to be revealed tomorrow.

Sleep tight my friends – enjoy a look at the moon, sing your favorite song and get to your dreams.

Day One

My team – Mike and Joyce – brought me to the Chemo room.  Brr. It is cold in there – but heated blankets made the nurses my friends for life.  There are around 10-15 stations – mine had a big blue chair and a dizzying array of tubes, suspended bags and machines – lots of buttons.

I had two meds this first day – two bags to be drained into my veins – slowly – or so it seemed to me – one took an hour and the other took 45 minutes (oh, it’s shorter!! uh huh).  I found that I can’t sit still for three hours – guess nerves.

But the needle slid in my arm and the drips began.  Nothing.  Didn’t feel anything but ants crawling in my nerves like they have been doing all along.  I tried observing – watching the nurses as they went about their day.  One woman had the most beautiful paint job done on her hair – pinks, golds, blues, green – over her long black hair.  She had my favorite desk too – little toys and such.  And a decorated gourd.  Of course, her desk was only one I could see.

I kept a watch on the bag level – almost mentally pushing it out into my arm so I could leave faster.  I don’t like cold.  I brought a hat, a blanket and a scarf – they warned me it would be cold.

So the team and I went home.  Have to be back Thursday and Friday – 3 days on meds and 21 days off.  Had a good night’s sleep, but awoke with a little nausea.  But a little pill – they have a pill for everything – and a walk – I was feeling better.

I even had a light breakfast and lots of water.  I never was much of a water-drinker, but now I reach for an iced water like a lifeline.

So, I think I tolerated the first day rather well.  Be Here Now.  More later.

Demoted

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I admit going into the oncologist’s office I had hope.  I am recovering well from the operation – that part went great – got the tumor, removed lymph nodes and biopsied them – yay! they were CLEAR!

Then comes the news that during the CT scan, they noticed some spots on my liver.  Well, lots of people have fatty livers and live their lives just fine.  I had the second CTscan and an MRI to find out what they were and see if they impacted my status of Stage 3, Grade 1b cancer – curable with treatment.

Shift to yesterday – results of the scans:

Well, some of those little cells DID go a’ traveling – the cancer cells waved hello to the CT Scan and the MRI technicians from my liver AND my lungs.  In comparing the two CT Scans – more lesions had shown up on both my lung and liver while I was healing – so while I was doing all I could to recover from the surgery – these little monsters went traveling with their bags packed looking for a new home.

My mind kinda went blank as I was hoping for a completely different outcome.  My treatment of Chemo now would be to DELAY the cancer, not to cure it. And Radiation is out (part of the cure part).  So now I am at Stage 3, Grade 4 cancer.   Demoted.

Without treatment, I have weeks or a month, the doctor said.  That’s all I heard for about five minutes.  Weeks.  Month.  Me?  Can I see that report?  Weeks.  Month.  When I started paying attention again, the doctor said with Chemo, I can add some time – no, he wouldn’t say the quantity or quality of the time.  My type of cancer responds well to treatment – hates Chemo.  There have been “good results” – again, no promise of how long I can add by doing this.  I’ve been raking my brain trying to figure out what to do – it’s a nightmare when the clock is ticking and your fear paralyzes any logical thinking in your brain.

(Oh, and they want to scan my brain also.)  Great.  I am leaning toward taking the Chemo if I can get some more time.  I’ll see how I tolerate the sessions and if they can show a result that the nasty cancer is on the run.

Stay tuned.

cozumelart3

 

Finally

Done with the MRI – done with the CT Scan – now I meet with the oncologist for him to read the results.  This is not going to be easy.  I’ve been reading and walking – oh, yes, my sciatica went out–great.  Can’t win for losing, this one.

So wish me luck tomorrow – hope the old liver is just fine and my lungs are clear (they were last time).  I’ve been enjoying some music today and watching some movies.  Seven with Brad Pitt is always a treat.  (OK, dark side showing, Janice). Next up will be Battlestar Gallactica.   I love losing myself in movies – Lord of the Rings is my all time favorite.  Wait, can’t forget Aliens.

Until tomorrow.