Taxol - round 2

First off, the "extra" week off from chemo was awesome.  I felt stronger, healthier, more rested every day.  Dr Kurup said that this would be a nice preview of what's to come for my last chemo (coming up in just 3 weeks!).  For my bonus time, we went to the beach...the weather was spectacular - warm, breezy, sunny.  We even had s'mores by a fire on the beach under a thick blanket of stars at night.  Perfect.

Good thing I was feeling so strong that week...because my normally easy breezy Thomas decided to be in a funk.  Bob was traveling (his missed his Daddy), new teeth were coming in (ouch), and he is growing like a weed so I am sure his bones hurt (I feel you there kiddo).  Every night he cried and cried and cried when I put him to sleep.  This is not the norm.   And while I am constantly thanking the decision to have moved in with my parents for help, that week made it ever more apparent that it was a necessity.  On night 2 of crying, rocking, crying, rocking, crying, he finally fell asleep....only to wake up again a half hour later howling.  This was a first.  I came into his room and he had thrown up in his sleep.  He was hysterical.  I swooped him up and yelled for my Mom for help since Bob was gone.  How do you comfort a hysterical baby and clean up vomit at the same time?  Gigi (aka Grandma, my Mom) and I took turns holding and soothing while the other person cleaned up the mess.  20 minutes and one set of pajamas and changed bedsheet later, I was rocking him back to sleep.  But even though he was soothed, he just couldn't get comfortable...constantly shifting and squirming in my arms.  45 minutes later....vomit #2, this time all over me.  Yelled again for Gigi, round 2 of soothing hysterical (and now exhausted) baby while the other person cleaned up the mess.  Another set of clean PJs (and me now in a bathrobe), back to rocking him to sleep.  This time he fell asleep (more like passed out), but I rocked him and soothed him 20 minutes past him falling asleep to make sure there wasn't another incident.  It was now 10pm, I was exhausted...and thanking god that we lived with my parents because I don't know how I could have done that alone while going through chemo. 

I will say though that the one good thing about rocking a 25lb squirming crocodile to sleep every night is that you get ROCKED arms.  Baby boot camp was good for my upper body.  Too bad it didn't work my abs out too.

Of course the lovely extra week went by in a FLASH and it was chemo day before I knew it.  I didn't have my usual ohmygodIamgoingtovomit feeling when I woke up so I skipped the ativan.  But once we got 2 blocks from the hospital that morning the panic hit me hard and I had to fight the urge to jump out at the stoplight.  This is a first for me...I can usually "talk" myself out of panic situations...reason with myself.  These rushes of panic before chemo cannot be tampered by any of amount of reassuring.  It feels like a panic attack and my eyes dart around looking for an escape.

Everything went as usual....check in, weigh in, wait for chemo nurse.  But this time when I looked down at my wristband to look for "Karen" written in, it said "Liz".  Wait a minute.  No Karen?  I will be completely honest...I was heartbroken and took it personally.  You see, here is the deal with the nurses - they actually request which patients they get.  The day before they look at the appointment book together and it's like draft day, they choose the patients they want to work with.  It was no coincidence that I had Karen time and time again...she was choosing me.  And now it felt like rejection - why didn't Karen choose me this time?  I tried to shake it off (it felt so silly being upset that "my" chemo nurse didn't choose me) and made excuses (maybe she wanted me to have someone else...get variety...it's not me it's you....) but it was just a farce.  I wanted Karen.

Liz showed up and she looked all of 22 (she just looked really young...I found out later she is my age and has been working with these doctors for the last 8 years).  And even though she had the deck stacked against her because all I wanted was the comfort of a nurse I knew, Liz was wonderful.  It's no surprise....all of the nurses there are wonderful.  They all love working with each, love the doctors, the doctors love them...and it shows.  They all used to work together at another clinic and then when Providence opened this clinic in St Vincent's hospital 3 years ago, the entire staff moved over.  In the 8 years that they have all worked together (at the last clinic and now this one) there has only been one person to turn over for the ENTIRE OFFICE (this includes front desk, medical assistants, doctors, etc).  It's a big office and they are proud of the fact that they are a tight family.  And having come from a tight work family myself, I snuggled right in to this new environment.

We did the usual with Liz (new symptoms, how did the last round go, blah blah blah).  Then search for a good vein time (she was really good *and gentle* and found one easily).  Then send the blood off to run the numbers and wait for Dr Kurup.


The numbers came back (199 platelet count - up from 72 last time....really good!) and I was cleared for chemo this round.  But before we went back to the infusion room we talked about my last round and how brutal is was on me.  Dr Kurup said that I had an "extreme" reaction to Taxol - both in administering it (allergic reaction) and the side effects (felt like I was in a car wreck).  We bargained back and forth about how much drugs I should take and when (I am always for less, she is always for more since she wants me comfortable) and ended up on a compromise where instead of taking the prescribed steroids twice a day, I could start out by just taking it once a day in the morning and see if that works.  The reason I hate taking steroids is that I can't sleep at night.  And so with this compromise we were thinking that maybe if I just took one in the morning, I could make it to bed time pain free and then be able to just take vicodin for the pain which could also double as a sleep aid.  But Dr Kurup made it very clear that if needed to, I could take all 3 prescriptions at night at the same time - the steroid, vicodin for pain relief AND an ambien to fall asleep.  Sounds like a pretty jacked up cocktail right?  I hoped I didn't have to resort to this.


We went back to the infusion room, got all set up in our chairs (turned them around to face the windows) and settled in like we were getting pedicures.  Because of the allergic reaction last time, they set me up with 50mg of Benadryl (last time it was 25mg in the beginning) and zzzzzzzzzzzzzzzzzzzzzzzzz I slipped away.   You know when you are on an early morning flight and you close your eyes and you are convinced you didn't fall asleep because you can hear snippets of conversation around you, and the bar cart going by, and the stewardesses talking to the row in front of you.....and then what feels like 5 minutes later the captain comes on and says to prepare for landing and you are like whoa what just happened to the last 45 minutes?  That is how sleeping in chemo feels like.  I was convinced I didn't fall asleep...just resting my eyes....then I would open them again and my mouth would be hanging wide open, my phone had 3 missed calls and a text message and the clock had somehow moved forward a full hour.  Huh?   So it went like that for the rest of chemo.  My Mom had to leave towards the end for an appointment, so Heather swooped in with lunch, we chatted and ate our burritos and then next thing you know it was all over.  My Dad picked me up, took me to my acupuncture appointment with Ella, then back home in time for dinner with Thomas. 

**side note - when we went to the infusion room, I saw Karen.  I tried to play it cool, but ended up waving like a 3rd grader and mouthing hello enthusiastically.  She was not in the normal nurse uniform (white coat) and was just in street clothes.  She came over, held my arm and apologized because she was on phone duty today (one nurse gets assigned to handle the medical calls that come in during the day).  Phew...she didn't reject me...she was just on phone duty. **


The next few days were much much much better than last time.  I took my steroid pill in the morning, the pain was only lingering and minimal.  On Saturday I did end up taking 2 pills, one in the morning and one in the afternoon...the pain had started to creep up.  Of course sleep was completely elusive the first 4 or 5 nights...even with vicodin AND ambien I would just lie there, toss and turn all night...completely awake by 3am.  It gets better every night (restless sleep till 4am, then the next night till 5am, then the next night till 6am.....).  And for this round that was probably the worst of the symptoms - no sleep.  The pain was manageable.   It's a very unique pain, I imagine it kinda feels like extreme arthritis?  It's a throbbing swelling sensation in your joints.  The result is that you feel extremely fragile.  I walk around like an 85 year old the first few days.  I feel like my glass knees may break off like the bad guy in the Terminator movie when he gets exposed to liquid nitrogen.


So overall, Taxol round 2 has been the easiest so far.  Of course, what they did warn was by this time the "cumulative fatigue" has built up.  Before I had started chemo the doctors threw this phrase around a lot...cumulative fatigue.  At the time, all I thought it meant was "really tired" and I thought, well tired I can do...I know tired.  I've been tired for 2 years - first pregnant tired, then newborn breastfeeding mother tired, then working breastfeeding mother of a baby that doesn't sleep through the night tired....please, how much more tired can chemo make you?  I was pretty sure no one could be more tired than a working breastfeeding non-sleeping mother. 

Ok, since I have now experienced both I can tell you that they are like comparing apples and oranges.  It's a totally different feeling.  This must be why they don't call it "cumulative tired"....because fatigue does not feel like tired.  When you are tired (even breastfeeding working not sleeping tired) you can still function, albeit retardely...but you can still drive your car, carry a (retarded) conversation, work, feed yourself, etc.  When you are "tired" you can rest and feel better.    Fatigue....not so much.  Fatigue is like being completely out of gas.  Nothing in the tank.  Can't move.  Don't want to.  Too tired to walk over to the couch, might as well just lie down right here on the floor.  And lay there for a while.  This is not an exaggeration, you can find me on the floor often.  Good thing my parents have carpet.  Of course these are the days when I actually get out of bed.  I spend a lot of time in bed. 


The extra week off that I had to heal revved my engines back up again, but of course I am still running a few cylinders short of my normal V6.  I am pretty sure the extra week off was what made this round 2 of Taxol the easiest...my body was stronger, I was not as "tired" as I had been before, I am able to bounce back a little better.  Yesterday was the TA DA day and I woke up feeling good and extremely excited that it came after a week (like it had in the beginning of chemo).  The fatigue is still there, but it's nothing compared to what I felt like a few weeks ago.  I've spent much less time in bed this round (and much less time on the floor).  I did not get the flu-ey aches like last time...no extreme bruising or blood from the nose.  Much much much less stress overall on this round.


Oh and did I mention, only TWO MORE TREATMENTS TO GO.  It finally feels like I can see the finish line.  It finally feels like we are near the end.  It finally feels like I can dream about what it will be like to have energy...to sleep without ambien....to have hair?! 

Hair hair wonderful hair.  I realized from recent communication with out of town friends that I haven't really talked about my hair.  You have no idea what the state of my hair is.  The last time I talked about it was 2 weeks into chemo when I started to lose it so we buzzed my head.  And then I never mentioned it again.  So here is the deal with my hair - I didn't lose it all.  Which was a total surprise.  Not only did I not loose all the hair on my head (so I am pretty stoked that we buzzed all my hair off) but I didn't lose my arm hair, my eyelashes or my eyebrows (very stoked that I didn't lose my eyebrows, not sarcastic on that one).  My leg hair is mostly gone (and when I shave it's the equivalent of waxing - gone for weeks).  I have light stubble on my head (maybe about 20% of my hair left?) and it's growing...very very slowly (like barely at all, but at least it's growing a little).

I also decided a couple of weeks into having a buzzed head that wearing a scarf was a hassle.  When I thought about it, the only people that I really cared what I looked like was my family and they saw me every day all day bald (I never bothered wearing a scarf around the house once I realized it didn't bother Thomas at all).  So after my third infusion, when I had to go out the next day to get my immune booster shot, I was feeling tired (plus the appt was early, so running out the door to get there by 9am) and I just didn't grab a scarf to put on my head.  I figured if you can't go the hospital bald, where can you go bald.  Then I had to go to my acupuncture afterwards....and figured, well they don't care.  Then I grabbed lunch after the acupuncture appointment and realized no one really cares that I am cruising around bald...and more importantly it didn't bother me at all.  So from then on, I just went bald everywhere.  And let me tell you, while 90% of the people don't notice or don't comment, I do get some interesting comments.  Here are some of my favorites:

 - "what's up with your hair?"  yes, this was actually said to me.  I was paying the attendant at a parking garage and she looked up and actually said that.  I was kinda shocked, and said "chemo" and she looked HORRIFIED and so apologetic.  It had never occured to her.

 - "did you shave your head by choice?" this was said pretty early on in my going out bald experience.  It was very innocent.  We were in Cannon Beach (population 1,200) and the person working at the small grocery store was fascinated that I had a shaved head.  When I responded (gently) that it wasn't by choice, she said "oh...cause sometimes I just want to (making motions pulling out her hair) yank it all off!" I laughed and said it's very carefree if you decide to it.  And she said "someday..."

- "I really like your haircut" said quietly by a young edgy guy in his 20s when I was out getting lunch one day.  I wasn't sure if he said it b/c he knew I was going through chemo, or if he really just indeed dug my edgy haircut.  Either way, score.

- 2 ladies at my doctor's office commented that I had a perfect head.  One was the front office lady, another a medical assistant.  This was very early on.  I said that my mom told me that, but I wasn't quite sure if she was just saying that (she is a little biased).  The front office lady said "no, I see lots of heads....you have a perfect one".  That perked me up.

 - "Fashion statement or chemo?"  this was said by a bald middle aged guy at Costco.  At first I thought "oh maybe he is getting chemo too!" but when I responded "chemo" he looked extremely sad and apologized.

and my all time favorite experience......

- Bob, Thomas and I were out to lunch at the beach.  We were sitting outside at a small restaurant on a quiet corner.  When we walked up one other couple was there.  They were older (young grandparent age).  They asked if we would take their picture.  I took their camera, snapped a couple shots for them, and we started chatting.  They were so sweet.  He had just ridden (his hog, not a bicycle) all the way from Tahoe (in the rain!) and she had flown in to Portland that morning where he had picked her up.  They were going to spend the long weekend leisurely riding back down 101 until they got home again.  They were both oohing and ahhing over Thomas and reminiscing about when their grandkids were that young.  Oh, and did I mention that they looked like they rode Harleys so it was totally cute to see them get all gushy about Thomas.  We chatted for a bit, went back to our own lunches, and they eventually got up to start their trek.  She came over before they left and said "I just wanted to say that I don't know what is going on (she motions to my head) but you are such a beautiful family and bless you and I just hope that everything turns out ok" and it was so heartfelt and lovely...it felt like a big hug.

Most of the time the acknowledgment is silent.  On the morning 4th of July, we were at Cannon Beach lined up on the little main street watching the adorable local Cannon Beach parade.  It's mostly locals in cars, kids on bicycles...very cute.  Halfway through, 2 ladies marched by carrying a Susan G Komen banner, decked out in pink (and red, white and blue of course) for the Walk For the Cure.  One of the ladies noticed me, gave me a big grin and a wave.  It actually made me teary...in a good way.  And proud.

I did try wearing my wig....once.  We went out for a date night with Chris and Heather.  It was chemo eve before my last A&C treatment.  I popped the wig on and oh boy it felt weird.  My mom and Bob were both completely taken aback when I came out with the wig on.  It is identical to my hair ...you know, before I lost it.  It was a weird moment.  They were both very used to seeing me without hair.  I felt weird but figured maybe it will get easier?  We got to the restaurant and I regretted wearing it.  I felt so self conscience....way more than being bald.  I felt like I was wearing a unicorn on my forehead.  I kept adjusting it...it just didn't feel right. I felt like people were staring (they weren't).  I could not get comfortable.  And that is the last time I wore it.  


I know why most women don't want to go around bald while on chemo.  It puts you completely on display (or at least it feels like that) and I'm sure they think it's like ringing a bell and wearing a sandwich board that says "I have cancer" to everyone around you.  But here's the thing....you know what it really says to everyone around you?  It says "handle carefully"..."fragile"..."please be gentle with me".  And you know what? I don't mind that.  I don't mind that random people are going to be a little bit more gentle, a little bit nicer to me.  I'll probably miss it when my hair grows back!


So, for now, that is life - a little gentler out in the wild with the occasional amusing (and innocent) statement made about my lack of hair.  And as "carefree" as my upkeep is without hair....I still want it back.

Oh, did I mention....only TWO MORE TREATMENTS TO GO!!!!!!!!!!!!!!!!!!!!!!!!!!