Still Grumpy . . . .

Second round of Taxol was Tuesday, the 20th, & that time, Aubrie took me.  I got one of my favourite nurses, Lorna.  She’s a lot of fun, & easy going.  She’s a little older than my last, slower nurse.  She put the Taxol drip into the “express” lane, & we got out of there in 2 ½ hours – yeah! 

Lorna explained that the other nurse came from another program, & she was used to doing things differently.  Again, I can’t stress how nice new program girl was, but again, the Queen of Grumpy wanted to get out of there!  Lorna said that if I was going to have a reaction to Taxol, I was going to have one.  No amount of slow would have stopped it.  So, I was a happy camper – that day.

Turns out, Taxol isn’t as easy on MY system as it’s been touted as being.  In fact, if it wasn’t for the mandatory shot of Neulasta after the Adriamycin & Cytoxan cocktail, I would prefer that.

The side effects I’m experiencing are a little bizarre.  I can’t wear my contacts for days following the treatment, as my eyes dry out quickly.  If you’ve never worn contacts, you don’t understand how uncomfortable that is.  Your contacts feel like stones in your eyes, plus, the dryness attracts dust.  Let me see, how to explain that little feeling o’ fun.  Think daggers stabbing your eyes & you get an idea of the combination of dry eye plus dust on contact wearers.  Plus, the pollen that the rest of y’all can’t see, I can draw you pictures of.  Ugh.

Another really crappy side effect (especially for a writer), is my extremities hurt.  My feet & hands feel like they’re on fire.  They actually swell up, & I have to really set my mind to writing while they feel that way.  I feel like I have advanced arthritis, so to those of you who do have it, my heart goes out to you.  Truly. 

Another problem is I can sleep for days – literally.  I’ve been sleeping until noon or 1:00 pm.  I get worried that I won’t sleep the following night, so I stay up until midnight to keep from tossing & turning.  But, when my head hits the pillow, I’m out.  This doesn’t even take into account all the naps I take.  Normally, I wouldn’t be too upset about this; however, we’ve been having beautiful spring days.  I’ve slept through far too many & I’m bummed. 

But, on the bright side, I only have 10 more rounds (weeks) of this stuff.  Then, God willing, Dr. Morrissey & I will go for round two of the tissue expander.  He says it’s easier to have it in before radiation, as radiation messes up your skin.  Not looking forward to having surgery again, but, if it’ll make reconstruction easier, then I’m all for it!  Besides, I’m a quick healer & I’d like to have that expander back in my chest. 

I’ve gotten used to the sight of having no breast on one side, & one half of a breast (since they hacked off more than just a little “lump”) on the other, but that expander sure made it look like I had SOMETHING!  The problem is, however, the stretching of the skin.  It can get a little uncomfortable.  I’ll have to see how big I’ll want to go then.  I may just want everything to be over with & go back to my regular old C cup.  Then again, I may just go hog wild & get myself a set that I have to separate to see my feet!  Woo Hoo!

Tuesday, April 27, 2010

Third round of Taxol, & still not liking it very much.  Having the same problems with extremities hurting, & if sleeping were an Olympic event, I’d be building cabinets to display my gold medals.  However, I’ll go for about three to four days sleeping 14-16 hours, & then I’ll have one to three when I couldn’t sleep to save my life.  The pain will keep me up; I get heat flashes followed by feeling so cold I throw blankets on top of me.  I’ll finally fall asleep as the sun is coming up, which irritates me because as I said, we’ve been having beautiful mild spring days.

I had Lorna again today, & she brought an assortment of knitting needles for Aubrie.  Unfortunately, Aubrie wasn’t there to thank her in person; Elyse drove me.  Aubrie was trying so hard through texting to let Lorna know how much she appreciated the needles.  I have a bit of a feeling that she’s going to be taking me to my next chemo.

Also, Michele made more beads for me to take.  I did a few myself, so I wanted to refill the basket.  It’s funny, though, because the ladies that are going through chemo love to go through the basket.  However, they won’t take more than one or two.  I even have a big ol’ paper explaining the reason that we’re doing it.  Oh, well, if it’ll make just one of them happy, Michele & I don’t mind a bit.  It’s just so cute.  Oh, & Cathy & Natalie Muscara are talking about pitching in.  It just feels neat that ladies have something to take home from chemo that makes them feel good.  Michele likes the part that they don’t know that she’s doing them.  Makes it even more special when you give of yourself & don’t want acknowledgement or thanks of any kind. 

OK, enough with whining about sleeping through beautiful days & other effects of chemo.  Thankfully, I only have 9 more rounds of Taxol, so I’ll be beginning to grow my outdoor garden just about in time!

And I DO have something cool to look forward to.  Matt’s taking me to Ott’s Greenhouse.  For those of you not in my area, it’s one of the coolest greenhouses on the east coast.  They carry all kinds of unusual stuff.  I’m specifically looking for a brugmansia (really wishing for a double), or maybe a plumeria I’ve had plumerias before, but I couldn’t get them to flower.   Here’s what they look like:

You can get them online, but they’re cuttings, & not guaranteed to bloom the first year.  Since I have no patience, that doesn’t seem to be the route for me.  Sigh.  I’ve had plumerias before, but I couldn’t get them to flower very much.  Drove Matt nuts, but made me even crazier.  So, of course, now it’s a challenge & I’ve got to have bunches of flowers or die trying.  Having these two plants in my possession & actually blooming is my quest for the summer.  Oh, that & boobies.

Ott’s, however, isn’t open on the weekends yet.  So, I’ll check with them in May.  If you know of any greenhouses that specialize in tropicals in the Allentown area, would you let me know?  Tropicals or unusual annuals.  I’d sure appreciate it.  And the person who owns said greenhouse will REALLY be happy!  I tell Matt not to even open the credit card statement after a trip to a greenhouse.  It helps his blood pressure stay low.  Plus, I figure I’ve bypassed the “Lucy, you’ve got some ‘splainin’ to do” lecture!

Chemo for a Cranky Woman

Tuesday, I had the next phase of my chemotherapy – a drug named Taxol.  The good news is that it’s less toxic & easier on the system than the chemo cocktail I’ve been taking.   The most excellent, awesome news, though, is that I don’t have to have that dumb Neulasta shot!  

Then, we get to the bad news.  I have to go weekly instead of every other week.  AND, I have to go in the mornings.  Folks, I’ve been very honest with you & I’m not going to stop now.  I am not a morning person, which probably had a hand in my becoming a writer – I can set my own hours.  When I absolutely have to set the alarm clock, I actually dream (read “nightmares”) about having to wake up to it.  I’m a pro at the snooze button, & have slept through an hour of constant buzzing, which awoke the entire neighborhood.  So this morning stuff is not good news to me.

I went there thinking that this was going to be at least a 4 hour affair.  And believe me, my daughter, Elyse & I can prepared to move in.  We brought our laptops, books, school projects, music, & even a few DVDs.  However, I was informed that no, since it’s weekly, it should only take 2 hours.  I was soooo happy.  That, however, didn’t end up being the case.

The nurse that administered the new medicine was bound & determined to be careful, which is a good thing.  But, when what should have taken only two hours turns into four & a half, one gets a little testy. 

We started with the first hour, which for any chemo is the “pre poison” medicines they give you to prevent all manner of side effects.  The second hour was to be the administration of the Taxol.  The nurse slipped a blood pressure cuff on me (which had never happened before), & came back EVERY 15 minutes to check it.  After the first hour of supposed Taxol administration, I noticed that the bag o’ drugs was still almost full.  I then noticed that when the 15 minute blood pressure reminder went off, so did the drip.  I asked my nurse why & she said that she had the drip set to low, to be on the safe side.  Which, again, is good, except when you’re a fidget like me who’s been told that you were outta there in 2 hours.  Finally, the drip was turned up, & two hours later, I was going home – cranky.

What probably added to my state of cranky was the fact that it was HOT in there! It was a warm day, but apparently they didn’t notice, so that added to my heat flashes.  Then, I started sweating, but not due to heat flashes.  It was just plain old stuffy & warm in there!  By the end of the day that started at 10:30 & didn’t end until 3:05, I felt as if I’d been in a sauna.  When I got up from my chair, I thought for sure it was going to stay attached to my body.

A weird side effect that’s happened since beginning Taxol, though, is that my hands & feet hurt.  Or, more accurately, feel like they’re burning.  Of course, this really sucks, as I’m beginning to work again for Examiner, & am working on other things having to do with writing.  Plus, I’m still not over the bone pain.  Oh, well, at least I’m almost halfway into the treatments.  So there’s that.

ON THE BRIGHT SIDE

This experience has proven to me that people are amazingly caring.  My homeschool group, along with family, chipped in to bring dinners to my family.  These ladies weren’t just bringing food; they brought books, cards, body lotions, tote bags, handmade pot holders & everything in between (& too many to mention here).

My friend, Debbie, & her two babies, Jessica & Jason have been too adorable.  The two cuties came along with mom one time to visit me in the hospital.  Debbie is the one who brought the bouquet of Mylar balloons that I passed out to the other patients the day I was discharged.  You can read about that at “Beading for Chemo”. 

Jessica had brought me the teddy bear that I showed in that article.  She was thrilled that I love it.   Since then, whenever Debbie brings dinner, Jessica & Jason look for a new stuffed animal for me, or try to think of something that will make me feel better.  So now I have the original Baby Jessica, Bighead Jessica, & Jason Brownie.  Here’re their pictures:

Also, Jessica gave up one of her prized bracelets to make me feel better.  These are just children!  Well, children who are a reflection of their beautiful mom.

I can’t tell you how blessed I feel to have this wonderful group of women in my lives.  I can’t say thank you enough to express my gratitude to all of you.

Another friend, Kimberly Cornwell, told her church group at New Goschenhoppen about me.  I woke one morning a few weeks ago to find a beautiful knitted shawl on my doorstep.  Not just any shawl, either.  It was made out of the softest yarn you can imagine.  I’ve worn that shawl often since then, & have used the fringes as “worry beads”.  I play with them when I’m having chemo.  This group of women are part of what’s called the “Prayer Shawl Ministry”.  As they knit these beautiful shawls, they pray over the person who’ll receive it, even though they don’t know who will. 

Another group of women, who call themselves “Comfort Crafters”, donate hand sewn scarves to the chemo center.  These women are from St. John’s Evangelical Lutheran Church.  These scarves are coming in sooo handy as the weather is getting warmer.  I have several pashminas that I use when I don’t want to wear my wig, but they’re very warm.  These new light weight scarves are such a treat.

Of course, there was Dorothy Brandes who sent me a mastectomy bra.  You can read about her generosity in “Communication Stories”.  Again, never met me, just read about my story.

What blows me away about these women is that they do this for people they’ve never met.  They don’t do it for thanks or even recognition.  They do it out of the goodness of their heart.  They may never hear the words thank you; they probably will never see the face of the women whose lives they’ve touched.  Still, they do it.

There have been other acts of kindness that have been extended to me.  Some may have seemed small to that person, but made a huge impact upon me.  To all of you, thank you so much.

This journey hasn’t been easy, either on me or my family.  There have been a lot of uphill battles, & way too many trips to the hospital for surgery.  I’m lucky to have a wonderful, caring & supportive family.  But I’ve also been blessed to have had all manner of gifts, tangible & otherwise, big or small, delivered to me from the hands of earthly angels. 

And those are the times when you know without a shadow of a doubt that there is a God in Heaven & that He sends comfort in many shapes & forms.  Like I always say, “When God closes a door, He opens a window.  You’ve just got to feel the breeze.”  In my case, I’ve been sent a hurricane.

REVENGE OF THE GOD BEADS - & WHAT HAPPENED TODAY

Today, both girls accompanied me to Dr. Morrissey’s office & then to my heart scan (MUGA – I know, what the heck does that stand for).  Dr. Morrissey said that my scar has healed nicely.  Finally!  No hint of infection, & he doesn’t need to see me again for 4-6 weeks.  No offense to Dr. Morrissey, but, boy, that sounds nice.  I invited him & his kids to my homeschool group’s field trip to the Iron Pigs.  We’ll see, but I doubt it.

Then, we stopped by to see Michele at the library.  She’s getting ready for a HUGE book sale, & was up to her eyeballs in books.  Don’t let her fool ya, though, she loves that type of stuff.

Finally, on to lunch at Applebee’s.  I don’t think I’ll go into that, other than to say, I shan’t be frequenting them again.  Especially when they’re building a brand new Sonic next door – WOO HOO!

All in all, it was a nice afternoon to spend with my girl kid-types.  They’re so beautiful, inside & out, & I’m very proud of them.

I’ll let you know as soon as I hear about the heart scan.  I don’t think there’ll be any problem, though.  Before I started chemo, I had one of those scans; the doctors all told me that I have an excellent heart.  Strong, like bull!

REVENGE OF THE GOD BEADS

Well, just when you think you’ve seen it all. 

I told you that my mother in law, Gretchen, prays on those God Beads (called a Rosary to the rest of the world) like crazy.  Well, I shore ‘nuff wasn’t lying.  The beads, which I strung on a nice sturdy wire, broke.  While showing them off at my uncle’s house, they fell all over his deck & sent an entire group of adults to their hands & knees searching for them.   Gretchen reported that it looked like an adult Easter Egg hunt, as they wanted to be sure they retrieved them all.

When I heard about this (& without laying eyes on the God beads), I promptly diagnosed the problem.  I just knew it was where I connected the beads to the Hail Mary pendant in the middle.  Here, you can see what I’m talking about:

 As you can see, there’re three different connecting points where I attached the wire to the Hail Mary pendant.  I mean, really, what else could it be?

Well, I’ll TELL you what else it could be.  The woman prayed the heck out of those beads & broke the actual wire itself in half!  We’re talking a nice, sturdy wire here, folks, & she only had the God beads for a few days.  All I could think of was having to go back to the craft store & ask for help finding something that an 80 year old woman can’t pray to pieces – literally!  In all honesty, I think I’ll re-string them on waxed dental floss.  Let’s see if she can break those bad boys.

Oh, wait, Matt just told me that she broke another set last night.   I thought he was kidding.  He wasn’t.  Sigh.  The only thing I can think is that she prays so hard & so often, God is trying to send her a sign.  “I hear you; I hear you already!”

Wish me luck tomorrow re-doing those God beads, people.  And if you ever need someone to pray so hard, God gives up & gives in, give me a holler.  I’ll put in a good word to Gretchen.

GOD BEADS FOR GRETCHEN, BACK TO WORK & HAPPY EASTER!

Before I go into anything, those of you who’ve been reading this blog for long know that I’m very close to my mother in law, Gretchen.  Here’s the funny thing; her REAL name is Marbet. 

In different areas of the country, children use all kinds of names for their grand parents.  In the South, there’s Mee Maw & Mammy (spelled phonetically), other places use Grandma, & here in the frozen tundra of the North, they’re often called Mom Mom.  But, nooo.  My crazy in laws went with Gretchen & Normie; long story.  I should add that Normie has gone home to Heaven, but, he was a pip!  I could tell you funny stories about him . . . . .

Unfortunately, Gretchen, too, has been diagnosed with cancer.  She, however is a much more private person than me.  Read: lady.  But she’s been diagnosed & will be going through a different form of chemo than I.  Her prognosis is good, & if there’s one person on the face of this Earth that deserves a miracle, it’s her.  Do you remember that old saying, “When H&R Block talks, people listen”?  Well, our family has a saying, “when Gretchen prays, God listens”.  Please, please keep her in your prayers.  I’ll keep you updated on her condition as much as she’s comfortable with me doing

Of course, that doesn’t stop me from teasing her!  After she was diagnosed, I told her that just because I have cancer, didn’t mean she had to copy me.  I think she went & got it for the bracelets Michele & I made.  Exasperated, I said that all she had to do was tell me she wanted some.  Man, talk about going to great lengths – gee whiz!

Gretchen is a devout Catholic, & she & Matt take the kids to church every Sunday.  I don’t go, though, because it seems like too much exercise that early in the morning.  Have you ever been to a Catholic service?  Holy cow!  Kneel, sit, stand, get up & get some wafers, kneel, shake hands with everyone around you, sit, stand, & so it goes.  Plus, they go to 7:30 mass, which is just about when I’ve gotten into a really deep sleep. 

Now, don’t go thinking I’m some Godless heathen, though.  I do go to church sometimes, & I pray – a lot.  I’ve even had an honest to goodness Angel experience when I was pregnant with my son, Dakota.  He wasn’t supposed to survive his birth, but God made sure I knew he would. 

Any who, talk about getting WAAAYYYY off the subject.  Back to my story about Gretchen.

Gretchen is never too far from a set of God Beads, which is technically called a Rosary.  We even had a hotel send us a set that she had left under her pillow while on vacation.  So since I’d taken to beading like a pig to mud, I thought I’d make her one.

What was I THINKING?  There’s a pattern to those God Beads, folks, & apparently, you really, really need to get it right.  It’s kind of the point.  The first time around, I messed up the count, & had to start over.  The second time, I missed a spacer bead.  Now this is important because it keeps the person’s place while they’re saying these prayers.  Even though I knew she’d never mind it, I took all those God beads off, & strung them all again.  I finally got it right the third time.  Well, at least I’m fairly sure I did, since I stopped looking too closely.   Of course, if I screwed it up, she’d never tell me.  From all accounts, though, I managed to do it right!

Here’s a photo of my rendition of a Rosary; heretofore called God Beads in our house:

I figured that since Gretchen spends most afternoons praying over me, she should have a rosary made by me.  For my part, man, I’m glad that’s done!  I have a few other things I want to make, but I’m going to need a break.  Those God beads were a pip!

EXAMINER

I’ve started back to work at the Examiner; a little.  I’m putting together my homeschool group’s third annual cyber school fair.  I decided to start with writing about that & interviewing the different schools.  Next up, I’m going to interview the Phillies’ minor league team players. 

I swear, people, I’m not making this name up.  They’re called “The Iron Pigs”.  Whaaaa??  I guess it could be worse, though.  Other minor league team names are Mud Hens, Bats & Bisons; just to name a few.  It makes you wonder if they chose names like that to get the players super eager to move up to the majors so they don’t have to walk around wearing those jerseys.  You know what?  I’m going to have to ask & I’ll let you know what I find out.  And if you’re an Iron Pigs fan, please don’t kill me!

The problem with writing for the Examiner is that I have to be all professional.  I know!  Get up off the floor – ME, professional & behaving!  Well, not exactly behaving, but at least trying really, really hard not to piss anyone off.  I do that so well without even trying.  I think it may have to do with my big fat mouth.  Words just fly out of it before my brain catches up to tell it to shut up.  On the bright side, it’s good practice for my real life. 

If you ever run into Scott Palmer of the Phillies, say my name & I’ll bet he remembers me, but probably not all that fondly.  Apparently, he was not amused that I knew nothing of baseball, & shared my ignorance, no matter how innocently, with him.  What may have been the final straw, & truly annoyed him, was when I remarked,   “I didn’t know y’all have two of those big ol’ trophy thingies (World Series cups).  Hey, Michele, doesn’t it look like Caesar’s crown?”  I thought Michele was going to dive behind one of the plants to get away from me.  Her facial expression in the photo below might illustrate my point better than my words.

Michele in front of one of the series trophies – the BIG ONE (ooohhhh)!

Doesn’t it kind of remind you of those crowns Caesar wore?  Well, anyway, I don’t plan to run into Mr. Palmer any time soon, & I’m sure he’s not losing any sleep over it.

I’m still having good days & bad days, but, now that the major poison round is done, hopefully the good will out weigh the bad.  At least I hope so.  I’ve got to show up for the field trip to see the Pigs.  I don’t think it would look very good if Michele ended up having to pull me along in a little red wagon.  Trust me, she’d do it, but she’d probably make me wear some type of hospital gown with a bib in case I drool.  Not exactly the first impression I want to make, don’t ya’ think? 

Wish me luck with that.  Well, actually, you might want to wish MICHELE luck that I don’t go & do something stupid that’ll make her end up sitting in a jail cell with me.  We’re both perfectly prepared for what most of our friends consider an inevitable happenstance.  But I think she’s hoping that our homeschool groups will only have to read about it in the paper.  Not witness it in person; sigh.  She’s a really, really good friend.

In the event that I don’t get back to writing for a few more days, I want to wish all of you a very Happy & Blessed Easter. 

Finished the BIG TWO! Woo Hoo!

Sorry I haven’t written for a while.  Things have been weird, but here’s the cancer update.  I have more to tell you, & I should have that up by later today or tomorrow.  If I can stay awake – yesterday was the Neulasta shot – buger.

I finished the “big two” of my chemo, Adriamycin & Cytoxan.  They’re the two that made me lose my hair.  So far, though, I haven’t lost too much of my eyelashes & none (that I’ve noticed) of my eyebrows.  So, in my zeal to be prepared, I’ll have an extra set of eyebrows (see “Eyebrows, & lashes, & wigs, oh my!”).  Oh, well, I’ll keep them.  Maybe as I age, they’ll come in handy.  At the very least, Dakota can use them for costumes. 

Next up is Taxol that I’ll have to have every week, which is a huge pain in the rear!  We’re not sure if I’ll have to have a shot of Neulasta after each one of those treatments, though.  They’re going to run a blood test after my first one, I think, & that’ll determine whether or not I have to keep having them.  If you’re a praying sort, would you pray that I don’t ever need that shot again?  It really is the worst of chemo.

The chemo itself makes me really, really tired.  But the other meds that they give you almost (I stress almost) make up for the other side effects: nausea, diarrhea, & a whole bunch of other unseemly side effects.  And, as much as I hate Neulasta, it kept my white blood cell count up, which kept me from getting every sickness that came down the pike.

After the 12 weeks of Taxol, radiation therapy is up.  I’ll have to do that 5 days a week for 6 weeks.  I’m not too nervous about that, though, even though it’s supposed to wreak havoc on your skin.  I think that with all the advance preparation I’ve been doing (vitamin E & C, Bio-oil, & another one that Dr. Morrissey suggested); I should get through that ok.  Plus, it doesn’t take that long.  The nurse said it’ll take longer for me to drive to the hospital than to get the therapy. 

So, if everything goes according to plan (& there are no more nasty infections), I should be done with my chemo & stuff by September.  That’ll be great, because it’s both my birth month, & we go to the house in Bushkill at that time of the year.  I don’t think I posted pictures of the kids with the deer up there.  I’ll try to add that to this blog sometime this week – giggle!

We’ll see how long it’ll take Dr. Morrissey to construct some new boobies.  But, wouldn’t it be a swell Christmas present?  I’ve reconsidered the size thingy – I want some honkers!  Well, maybe, I don’t know.  Depends on what I have to go through to get them.  Let you know when we get closer to that.  Still, boobs that I have to separate to get a look at my feet don’t sound all that bad.  Especially after having regular ol’ sized ones for my whole life.  Just saying.

OK, look for “God Beads” next!