Random thoughts....

 As I approach the ½ point of this chemo thing, I thought I would share a few random thoughts…

·         My biggest fear was if I ever got cancer there was no way on earth I could handle it.  Well, I am handling it and while this is not exactly a fear I really wanted to conquer, I think I pretty much have a grasp on it.   A big thank you to the person who discovered the nausea pill—I am forever in your debt.

·         I have sung the praises of Portia a few times now, but I have to tell you, she really is a pain in the ass.  For some reason I am always hitting her and it hurts like hell—if I hit her just right I can bring tears to my eyes and drop to my knees.  After hearing me yell ouch a few times, Gaye said if she ever needed a port it would go in her chest.  Funny thing is, I don’t ever remember hitting my upper arm until Portia was installed.  Figures.

·         I am beginning to think Gaye might be right about the head scarves.  For the most part I have been wearing Scarlett and boy does she itch at times.  I probably should carry around a hat just in case I want to rip her off.  Speaking of, I sure hope I don’t get pulled over if I am driving at night—I usually take her off and whew, it feels great but I am still not embracing the egg look and goodness knows it might scare the heck out of the officer. 

·         I so appreciate all the concern and support I get.    I have said it before and I will continue to say it, it is so humbling.  However, I swear if I hear one more time “this too shall pass” I might just scream.  I know, I just set myself up and yes, I have a very good idea who will be the first one to test this theory. 

·         I am starting to lose the taste for certain foods and while I am trying to put up a fight… I am losing.  Ketchup takes like metal, milk tastes sour, peanut butter is starting to taste like cardboard and the smell of certain foods are beginning to do me in.  My love for tuna sandwiches is on hold as the last one did nothing for me.  The other day I told Billy that even the thought of a cupcake made me sick—he was speechless.  Oh well, I need to lose about 10 lbs anyway. 

·         The fatigue really is rather amusing.  Some days I get up, take a shower, get ready for work and I am done.  Other days I am good to go.  I have been told it only gets worse at the treatments continue.  Great… so looking forward to the next few months.

·         I still have my eyebrows—and I don’t have bad hair days.

·         I will never, ever be able to say thank you to all the people who have supported me, prayed for me and just cared enough to let me know they have thought about me.  Again, very humbling.

·         Philippians 4: 6-7.

2 down, 4 to go...

My veins are filled, once a week with a Neapolitan carpet cleaner distilled from the Adriatic and I am as bald as an egg. However I still get around and am mean to cats. ~John Cheever, letter to Philip Roth, 10 May 1982, published in The Letters of John Cheever, 1989, concerning his cancer and its treatment.

While I only have my veins filled every three weeks (let’s just say that one delay was a fluke), I am not mean to cats, but I am bald as an egg.  (Remember cha cha chia??  Now it is the egg commercial—the incredible, edible egg).  I woke up the other night, sweating under my still to be named night cap, looked over at my dresser-- which houses the Scarlett, the Lizzie and the newly named ferret—Friar Tuck --and was like crap, I look like a friggin egg and I have hair sitting on plastic frames--this sucks.  Well, at least  I still have my eyebrows (for the moment anyway). 

I completed Round 2 this week and am happy to report Oxycodone is a miracle drug.  The leg pain was bearable and contrary to Estell’s worry I am going to end up in the Daily News in the arrest section, I only took it at night.  (Estell is the Assistant Library Director and my immediate boss).   I will admit, while I appreciate the lack of pain,  it makes me feel too strange so there is no need to worry.  Nothing like waking up every 5 minutes thinking you have slept for days and sweating like crazy and not even be hot flashes.  But again, on the positive side, I did not need much of the nausea medicine and the week was not bad at all.  I did feel bad for Laurel, as she was here this week and I was napping most of the time.  Still, it was nice to have her here.  I am sure just laying eyes on me and aside from the hair, I still look the same—not like a cancer patient.

I would like to focus on the fatigue factor for a moment.  Never in my life have I ever been so tired.  So much so I gave into said boss (and others who will remain nameless until I feel like picking on them) and until this is over, I promised I would a) not be a second person, I would always be a third so I could come and go and b) accept with open arms the fact I will need help from others and to just deal with it.  Strangely enough, it took me maybe 8 hours to accept this—who says stubborn people can’t change!

I also gave up my Sunday School class until the fall.  Now that was hard as if you remember they ground me.  There is nothing better than something through the eyes of a child.  They are blunt, honest, don’t realize they should not ask certain questions and are not concerned with political correctness, they just want to know.  Granted there are many cringe moments, but still, they treat me as if I am not sick, and at times, that matters. 

 It is Monday and I have survived—and it was not bad at all, it was all controllable and while I understand the side effects and fatigue usually get worse as the treatments continue, I can deal with it.  After all, the cup is half full!

Ground Hog Day...

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

            Well, let’s try this again.  A week ago tomorrow I sat in Dr K’s office with Dr K and Becca (his awesome PA) while Dr K struggled with does he let me take the chemo or not.  Who knew my arm hurting would turn into what I call a free week?  Well, the not taking chemo won out.  I understood; the chemo I am taking is strong and he did not want to give me chemo when I was potentially fighting an infection in my arm.  I swear, the arm hurt, but was fine when I left home.  By the time I got to the exam room, it was red and hot when Becca looked.  Figures. 

            Looking at the positive:

1.      I can drink Root Beer!!!  Yay and a big shout out to my “sissy” Christine for not only delivering STEWARTS Root Beer—but ice cream as well.  Ahhh…

2.      Portia did her job yet again!  I pray no one reading this will ever need a port, but if it happens to be in God’s plans, get it—they are worth their weight in gold.

3.      I can have mushrooms—cooked when the counts are down and some fresh during the week before chemo when my counts are up.  This also includes salads and other unpeelable veggies.  Sadly, this makes me happy.  Never, ever thought I would say I miss salad and veggies.  Croutons, yes; cheese yes; but salad? 

4.      Sugar:  while there have been studies and people have strong views either way; Becca said there is nothing concrete and if I want it, go for it.  I am trying to figure out if I should get a Chocolate Peanut Butter Cupcake from Coastal Cupcakes tomorrow.  Might have to save that for another Monday—I certainly don’t want to get sick from it and then never want another one again.  Now that would kill me….

5.      I worked 32.25 hours this week and felt good doing it.  My goal on Friday was to make it 10 -4:30. (Gaye thought 5, but I was humoring her as I thought I was getting tired) And then somehow I got a second wind and the next thing I knew I was happily doing the deposit and locking the door with Gaye at 6:00pm.  It was great.  (Note to Estell—don’t get too excited, it will not last.  My goal for this week is 10 hours.)

6.      Although Dr K did not like my free week, I did.  I felt good this week and almost normal.  I dog sat for Turner and Hooch, something I had planned for months and was so glad it all worked out.  (Note to those questioning that decision: A) I had back up if I went to the hospital or got sick. B) The house is comfy and feels like home. C) Not far from home.)

7.      I got to teach my Sunday School class today.  And they did not disappoint.  Keep in mind they all know I am sick and most of them know I have lost my hair.  So Kaleb asks if they can see my head and I say no--- if I ever let them, they will have to earn the privilege.  Meanwhile, Sam, just stares at me, his mouth drops and he says” you mean you have been wearing a wig the entire time I have known you?!”  The look on his face was priceless and I could not stop laughing—luckily Josie set Sam straight “Of course not Sam, just since the CANCER!!!”  Sam: “Oh good. I was worried.”   I lost it even more when Lily—quiet Lily—just looked at me, rolled her eyes (she is good!) and said “boys.”   I know the time is coming in which I am not going to be able to teach them as much as I would like, but I will take every morsel until I reach that point.

I have taken my pills and am ready to get this started yet again.   I admit to dreading the side effects and what will happen this time around.  I have my strong stuff for the leg aches/cramps.  I have the stuff for nausea and I am looking forward to napping in my own bed.  Yet, I am also curious to see what God’s plans are for me this time around.  I know Dr K would prefer me to glide through gracefully and it would be nice, but even when I was supposedly healthy grace was not really a word to describe me.  So I guess I will have to set the good doctor straight.  And, if something out of the ordinary happens, I will remind myself I am not the one in charge, everything happens for a reason, there is a lesson in everything I have been given and I will prevail.   James 4:6.

Round 2

     During chemo, you're more tired than you've ever been. It's like a cloud passing over the sun, and suddenly you're out. You don't know how you'll answer the door when your groceries are delivered. But you also find that you're stronger than you've ever been. You're clear. Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it's instantaneous. ~Melissa Bank

     Well, round 2 is after the 9:15am sit down with Dr. K.  I am ready—it’s time to do it again and see how this one goes.  Things I learned from round 1:

1.    Portia is wonderful.  I love her.  And yes, she scares me as if she ever gets infected, I would not only spike a really, really high fever (according to Dr. Lynn) but then Earnest would have to make his appearance (just something else for the guys—see you were saved by the MALE port.  Oh please…).

2.    The first bag they give is the valium… ahhh… that says it all.

3.    Chemo was not bad at all.  Made a few calls, did a few minutes for some meetings and then just rested. 

4.    I crash 3 days early… so now we can try to work on that.

5.    The hair is basically gone, so check that off the list.

6.    Ketchup takes like metal… there goes the sausage mcmuffin… have to have ketchup. Dang…

7.    Tomatoes seem to have the same taste as ketchup… hmmmm... do I dare try a piece of pizza?

8.    I will lose my appetite in 3-4 days so the weight will drop.  But, have no fear as it came back during fatigue week… gained it back.  I could not care less.

9.    The toilet paper queen (Mom) is now the tissue queen with the purchase of aloe tissues.  It seems a runny nose is a side effect of chemo.

10. The leg cramps are what they are and is a side effect.  But he will give me strong stuff to try to help.  He told me I can deal with it for 3-5 days.  Guess he thinks I am strong. 

11. The nausea medicine worked.  That was the best news ever!

12. Thrush sucks…

13. I would have no problem being admitted to the 10^th floor again—but I would rather not be.  Still, the cherry Italian ice was great!

     Things to ask Dr. K in the am:

1.    What’s up with not being able to have Root Beer?!

2.    My right arm is hurting… am I going to need one of those sleeves and is my arm going to expand.

3.    If the wonderful nausea medicine proves to be too weak as time goes by, can I get something stronger?

4.    Root Beer?!

5.    Can I eat cooked mushrooms?! Please?!

6.    Sugar is one of my food groups… so what do I do?

7.    When the head is finally shiny and no sign of hair, does it stop hurting?

8.    My feet are starting to get that long word thing. I know I have to wear slippers, but will it ever stop?

9.    Root Beer?!

     I have also learned to slow down more than I have.  I had to work 8 hours the other day (for me) and yes, it was hard.  I have figured out I will schedule myself for no more than 6 hours and if I want to and can stay longer, I will.  If I need to leave earlier, I will.  This is a HUGE step for me.  Today I also realized while I love my Sunday School class and they give me such joy (most of the time!!!), I need to step back.  They are kids and they are germ carriers (not their fault, just a fact of life, we all were kids once.  I apparently spread the joy with the Chicken Pox—or was it the Measles?).  One had strep and he did not come back (thank you!), but then I was sitting next to a sneezer.  And while normally it would not bother me, I actually was worried.  I don’t need to get sick and have chemo postponed and while I really did not mind my mini vacation at New Hanover, I doubt my insurance company would like it. 

     I have also learned it is faith which has sustained me this far and will continue to sustain me throughout this entire “blessing”.   Hebrews 11:1.

Hair today... gone tomorrow...

There's one thing about baldness, it's neat. ~ Don Herold

            Just once I would like to be able to plan and have it actually work out.  I had the whole hair thing planned out.  The hair was supposed to go on the 14^th day after the first chemo and so I scheduled the shearing for then.  Of course it did not happen the way I planned.  Instead, my hair started falling out 3 days early (figures, I crashed 3 days early so it makes sense the hair had to go early).  Then again, I swear the hair knew it was short term.  It was like right before you get it cut—it does what it is supposed to do and you question cutting it when you do.  Same with losing it—looked good and did what it was supposed to. I swear the hair just knew it was going.  But, while I was good with losing it, I did not want to wake up with clumps on my pillows, that would probably pushed me over the edge. So I called Shelia—the go to wig person in Wilmington—and changed the shearing.

            I really wanted Betsy there, but due to the change in days, she was not able to be there. However, Erin, Betsy’s oldest just happened to be in the area so she took Betsy’s place.  Mom was going and I wanted someone else as I knew it was bothering her and while I also knew it would have bothered Betsy, she could have laughed with me.  Well, Erin was a great stand in.  As the hair was going, Mom and Erin both took pictures – I am going to do a scrapbook—and it really was not a bad time.  Mom held up well and there was a lot of laughing.  Once it was all gone, I looked up and all I could see what a buzz cut with that danged widow’s peak I have always hated.  Turns out that widow’s peak is actually helpful—the wigs line right up there and they are straight—never would have thought it would come in quite handy.  At this point, I have a knee hi stretched over my head so I could try on a wig I had my eye on (we already had one, but this one was different and I wanted it).  I looked like a Chia pet… stubble growing up through the stocking (so I start singing cha cha chia… bet you are singing it now). So we try on the one I had my eye on and that is when it hit me—I had to name the wigs.  So I did.  The one Mom bought me I named the Lizzie—color and cut was me.  The one I had my eye on—the Scarlett—darker with some red in it and some attitude. And of course the ferret—that is the hair for when you want to wear a hat—it is like a ring and when you put a hat on, it has bangs.  When it is just sitting there, it looks like a ferret or even road kill.  I might or might not use this, time will tell.  Still, it had to be named.

            So here I am stubble which needs to fall out soon as it really, really itches and is annoying as anything.  I have 2 wigs and a ferret.  I have been wearing the Lizzie and Scarlett interchangeably and laugh to myself when someone says I like your new haircut.  The Scarlett was the one which got the most comments at the library the other day.  For the most part I just said thank you and in the back of my mind I was wondering what they would think the next time they saw me and I had either the Lizzie or the ferret on.  I did have a patron go on and on and finally ask me who cut my hair and I came clean. 

            It is not as bad as I thought and I am getting used to wearing a soon to be named night cap as my head gets chilly at times.  Plus it is more comfortable.  The dogs were a little confused as they heard my voice, but the soon to be named night cap was throwing them off.  I did have someone—who will remain nameless as to protect his embarrassment—who came up to me and said how much he liked my wig.  This was the week after chemo and I had to tell him 2 times it was still my hair.  I could see the moment it hit him what I was saying, it was in his eyes and I will admit it was one of the funniest things I have ever witnessed.  Not to him, but to me.  And when the hair started coming out, I really wanted to go to someone and just say—you make me want to tear my hair out—and then pull a bunch out, but I could only think of a few who could have handled it and the timing was off.  Darn it, I would have enjoyed it!  As for the hair, I heard it will probably come back curly and possibly a different color. As long as it comes back, I really don’t care.  Then again, there is something to be said for the time it saves by just having to pull on a wig and go!

Home sweet home.....

I’m going to say it and this time I know Mom will not mind at all. Monday morning I felt like SHIT.  Seriously, it was not good.  I was still having leg cramps (which I was dealing with) but I just had no energy.  Mom got a little inkling when I came down and said I was not going to work or to the meeting I did want to go to (really... I really did…).  I said I was calling Susan and getting an appointment.  And I did. She said you are an hour away, get here as soon as you can.  So after telling Mom, drying my hair (had to as shortly there will be none to dry) and dressing, I walked down the stairs and just plopped. And stayed plopped. Mom yelled for me to let Gwinny out.  I looked at Gwinny; she looked at me.  I had nothing in me to let her out.  She knew, I knew it, but Mom didn’t and all I could think of was she was not going to be happy.  The inkling grew when I told her I didn’t have the energy to let Gwinny out.  Grew even more when she told me to get my coat on and I told her I didn’t have the energy.  Luckily I got to the car and was able to plop.

            Got to the office, offered up my arm in sacrifice to the blood needle and told them they better hold my arm as the way I was feeling I might jump.  Brittany—who can nicely get blood out of a stone, grabbed someone as she just knew and it worked.  I’m thinking, not bad, blood drawn, still feel crappy but at least that was done and over with.  We were sent to the puzzle room to wait for the results (I think you can figure out the puzzle room for yourself).   I plopped and then fell asleep until Susan came in with the results.  This is when it was hitting Mom that I really was not feeling well (she’s a quick study… and yes, I will hear about it). The only day I forget to take my temp and I have to admit it; so Susan makes me go with her.  Well, it was 101.5 and since I run a degree low in that department, it really was a 102.5.  I was escorted into the exam room.  Dr. K comes in, impresses Mom greatly with his “I am so sorry you are feeling bad” comments (which he really does mean) talks, listens, examines and while he is talking again I pick up on a something he said.  Me: You are putting me in the hospital aren’t you? Dr. K.: Yes, you are going and it could be up to 5 days. Me: I knew I should have packed a bag. And 5 days? Dr. K: Yes, you will be there until your fever is gone for 48 hours and your white blood counts (WBC) are at least 500. Me: (big sigh) alright.  He leaves to get it all in motion.  At this point I am thinking I might get to ride in an ambulance.  However, keep in mind Mom is sitting there. She brought me back to earth.  Darn it.  So after Mom drops me off at the front of the hospital and I walk to admitting all on my own; I wait. And I wait.  Since Mom had to go home, she left me (I told her to go for those of you possibly thinking that was cruel) and it was a good thing too as it took 2 hours for a bed. But finally, got one. At least they brought me up in a wheelchair. **Apparently I did not make this clear enough... Mom left to get my things and came back-- something that I should have spelled out. Poor Mom, she got a few questions at church... but anyone who knows her knows she came back--- she would not just abandoned me--while sick.  Maybe another time, but not when I am sick.**

            Without going into too much detail; I met Leigh, my day nurse and angel (and I could be her mother) who loved the fact not only did I have a port, but her name was Portia.  In fact, I had 3 different night nurses and each time Leigh introduced them, she told them I had a port (apparently it is a big deal) and her name was Portia.  Leigh “opened” Portia and the healing began.  She also did 1 blood draw on the arm and that was it for the entire stay as they got everything they needed out of Portia.  I love Portia.  She is wonderful and saved me so many needles.  My fever was gone by Monday night and I was feeling a little better. They were treating everything I had and it was working for the most part. Yes, it is true; they do wake you up all night long.  At 430am, I had a blood draw and Dr K came in around 7 and was a little shocked as my WBC was at 730.  Yes, I was bouncing back.  I told him I had to be home Wednesday as the sick people on the floor would not appreciate me watching the UNC/Duke game at the hospital (boy, it would not have been pretty... good thing I got out). Speaking of the 10^th floor—there is something to be said being the wellest sick person there.  We had room service – and if I did not call in my meal, they called me and I even got a partial massage Tuesday afternoon—life was great! Back to Dr. K.  He was seriously happily surprised and said that as long as my fever did not return and nothing major happened, I was out of there Wednesday.

            I was waiting Wednesday morning and would you believe Becca (Dr. K’s PA) was not as early as the day before.  But when she finally made it, she said I was outta there!  But Dr. K had to let me know my numbers and talk to me.  So me and my shadow (the IV thing that followed me everywhere—I was good at unplugging it and dragging it to the bathroom) go potty and who shows up—yup—Dr.K.  Me: I’ll be out in a minute—your fault anyway with all this liquid you are putting in me. Dr K.: Well, as long as you can hear me, your counts are good and they are…Me:  you know you have to put it in easy speak. Dr. K: your numbers are normal, I’ll go start the paperwork and be back.  Me: okay (laughing too as I knew Becca had already started them). I’m starting to plug in my shadow when he comes back in telling me Becca had done it all (I did not admit to knowing this).  We talked about how this will be my pattern and now we can be proactive. He is also happy I bounced back so fast which bodes well for future treatments.  As he is leaving I said something about overdoing it and he immediately tells me I had NOTHING to do with being so sick and it was the WBC which I have NO control over and it was NOT my fault.  Made me feel better. 

            So last night I got to sleep in my own bed, without my shadow attached to me, no machines beeping, no bed alarm ( incase I fell out of bed—pain in the butt--the alarm, but would have been a pain had I fallen), no one taking my temp, my blood pressure or drawing blood.  Even after that wow ending to the UNC/Duke game, I slept soundly and I slept all night long.  Peace be still.

Luke knows best.....

Then Jesus told his disciples a parable to show them that they should always pray and not give up. Luke 18:1

            Luke is 9, has this voice that makes you laugh, says what he thinks, is  smarter than an adult, and I fell for him years ago when I first met him at the library.  And he gets it; he gets it all and understands it. And by the way, he has Asperser’s.   I hate defining him, but Asperser kids and their families do not have it easy; normal everyday things can turn a world upside down.  I hate it for him; I hate it for his brothers; I hate it for his family. However, as God does, Luke has been blessed with his own Momma Bear, Heather.  And I have been blessed by her humor and strength in which she tries (yes Heather… I know you are cringing so I used tries) to live her life—and she succeeds so incredibly well.   Well, Sunday night, the night before my first chemo, Luke walked in and told Heather to tell me Luke 18:1.  So she did.  As always, Luke amazed me with his perception. So I put it away in the back of my mind to remember when I needed to.  

            As I mentioned before, Thursday was not easy.  The leg cramps were terrible, I felt terrible and nothing, I mean NOTHING was helping.  I took a hot bath, I took a hot shower and the only thing that happened was the hot water ran out and the electric bill increased significantly.   And I still felt like crap.  It was one of those WTH moments (what the hell for you non texters—and Aunt Sue—DO NOT use this to point out Mom needs to learn to text, so not happening).  I tried for hours and nothing.  I went online, searched “chemo leg cramps”.  Talk about stupid.  I should know better about searching for things like that.  However, I did get some good information as well as way too much information.  Way, way too much. 

            At 3:00am I finally bagged it and went back to bed.  I will admit to crying here.  More out of frustration than anything else, I would like to add, but I cried.  Then for some unknown reason, I thought of Luke and his Luke 18:1.  And I call myself a Sunday School teacher.  There I was, suffering, and for the first time in a very long time, totally forgot to pray.  Never even occurred to me.  (I would like to take a moment here to blame it on the frustration and the pain, not my complete and total lack of brain function).  So there I am thinking of Luke and how I should pray and one of my favorites pops into my head—“Peace be still” (I see a choir request here too).  So I pray and turn it over.  Well (as Grandpa always said) hot dog it worked! The next thing I knew, 3 hours had passed and I was feeling better—much better.    

            Talk about it always boiling down to the obvious;  that moment when it smacks you right in the face and you realize, damn, that was easy or crap, why didn’t I think of that sooner.  God still has so much to teach me and I still have so much to learn.  I do love that he teaches me so much through the eyes of a child.  Psalm 8:2.