The rollercoaster

First of all, I am so sorry I haven't posted anything in 3 weeks.  Everything is fine, I haven't been sicker than normal.  It was for purely selfish reasons that I haven't posted anything.  As you know by now, I normally don't post anything on a "bad" week (spend most of that time in the fetal position - just kidding! kind of) and my "good" weeks usually start a week after chemo, the following Thursday, where I would try to post something as soon as possible to let you know that I made it alive through another session. 

It used to be like a light switch on Thursday morning, I would wake up and TA DA I felt so much better all the sudden.  Unfortunately after chemo June 23rd, my next Thursday didn't come with a TA DA moment.  I woke up not feeling crummy, but not feeling good either.  It was the 30th, right before the July 4th weekend and we packed up the car and headed to the beach.  The weather in Portland this June had been less than phenomenal....overcast, gloomy, colder than usual.  But we had high hopes for July.  When we got to the beach it was perfect weather....sunny, not a cloud in the sky...warm, amazing.  Friday morning, waking up at the beach I finally had my TA DA feel better moment.  Bob, Thomas and I headed out for a morning walk to get some coffee.  Our walk to coffee is on a path that is just over the dunes overlooking the ocean.  It's a beautiful walk in any weather, but this morning it was PERFECT.  Sunny, warm, light breeze.....spectacular view of the water.  As I was walking along, feeling good for the first time in a week, looking out at the ocean, looking down at Thomas in his stroller, holding Bob's hand....I felt so happy.  And it was the first time in over 4 months I felt like that.  Now, I don't mean that to sound as depressing as it does.  I think most of you know me well and know that I am a pretty all around happy, glass half full kind of girl.  But for the past 4 months I have been dragging around this blanket of worry.  It's heavy, thick, itchy wool blanket...I never have anywhere to put it down.  It's covered with all the "what if's" that creep up on me in dark moments.  And I have been happy in the past 4 months, even through all this garbage....but in every happy moment I was still holding onto that stupid blanket.  I haven't realized I was carrying this blanket all along.  I only noticed it a couple of months ago.  I was at Target with Thomas on a day that I thought I was feeling good, then realized halfway through I wasn't feeling all that hot.  But I trudged ahead anyway, bound and determined to make it seem like I was ok.  I was dragging my feet, pushing Thomas in a cart, trying to convince myself that I wasn't too tired for this, when I saw 2 college age girls shopping.  They were shopping for a party they were going to that night, giggling, talking.  And it just hit me like a 2x4, they were so carefree.......and I was not.  And I looked down and realized I had that stupid blanket.  And I wasn't sure if I was ever going to get rid of it again. 

When I was walking along the dunes on a that perfect sunny day with Bob and Thomas, feeling good....happy, I looked down and realized I didn't have that blanket anymore.  I know I hadn't permanently lost it, but it just felt so good to not be carrying it anymore.  I felt...normal.  And I didn't want to go back to the house and write about cancer or chemo or side effects or hair loss or white blood cell counts or BLARG any of it! I just wanted to feel normal for a little bit longer.  So I did.  I completely ignored my emails, I didn't post anything that whole week at the beach house and I spent all my free moments playing in the sand with Thomas, sitting under an umbrella in the backyard out of the wind, walking on the beach, talking with my family.  Just being normal.  Again.  For a week.  It was wonderful.

Unfortunately, nirvana doesn't last forever.  I knew I would pick up the blanket again.  We left the beach on Wednesday night to get home in time for Thursday morning chemo session on July 7th.  I was sad to leave the beach behind.

But before I go into that session, I'll back track to the one before that I didn't post about.  It was significant on a few levels. June 23rd was my last infusion of Adriamycin & Cytoxan (A & C).  I woke up that Thursday and had a huge lump in my throat and immediately felt nauseous.  Not that I am ever super jazzed to go and get chemo, but this time I just really really really really didn't want to go in.  If I was 6 years old, I would have hidden under my bed or in my closet and hoped that no one would find me.  But I don't fit under my bed anymore and my closet is a lousy hiding place, so I took an Ativan for the emotional nausea and off we went. 

It went as it usually does.  We drove a few miles down the road to the hospital, went up to the 2nd floor and checked in at the Oncology and Hematology Clinic.  After a couple minutes a medical assistant pokes their head out - "Molly?" - and we all gather our things up and head into the clinic.  There is a large room in the center with about 6 big chairs.  They take you in, weigh you, take your blood pressure and your temperature, record it all then take you to an exam room and leave you for the chemo nurse.  They also give you an ID bracelet which everyone is supposed to check and double check before they give you any medication.

There are about 4 chemo nurses in the infusion room, but you are assigned to one nurse for your infusion.  Before your chemo nurse comes in the exam room, you know who are getting because they write her name on your ID bracelet just in case you forget her name and need something.  I looked down - Karen - was written in handwriting on my bracelet.  We had Karen the time before, and I like her a lot.  She's been a chemo nurse for 25 years - so in short she is a total saint.  But I got nervous.  The last time Karen had a hard time finding a vein and I got "the talk" again about getting a port.  I was already very nervous and nauseous.  I couldn't take another port talk.  I had hydrated up BIG TIME in the last 48 hours which is supposed to make your veins nice and plump...and easier to find.

Karen came in the room with her little kit (it looks like those plastic handled cubbies that you get when you live in the dorms and need to take your shampoo and stuff to the communal showers....at least that is what I think every time).  In this kit is all of her tools to get an IV started and pull blood to "run my numbers".  It starts the same every time - how are you? any new symptoms from last time?  I told her I was nauseous and had taken an ativan before leaving the house.  Karen nodded.  She knew.  She gently took my left arm and patiently looked for a vein.  It took a while....they were all hiding like the 6 year old me.  There was not talk of ports or not drinking enough water.  She was very patient, eventually found "a good one", put the IV in, drew some blood, squeezed my hand and said see you out there.

After this we wait for about 5 minutes for the numbers to come back on my blood.  I am sure they look at tons of things (they certainly run enough on the bloodwork, I asked for the labs one time) but all I they talk about is your white blood cell count.  If your white blood cell count is high enough, you can more forward with chemo.  White blood cells are what is produced in your bone marrow and these are your fighter cells.  They are the ones that fend off attacks, infections, etc.  Chemo decimates your white blood cell count, which is why I was getting a white blood cell booster shot every Friday after Chemo...to make sure my body rebuilt itself again after the chemo wiped all the white blood cells out.

Dr. Kurup comes into the exam room after the numbers are run, yes everything looks great.  Really good.  In fact, so good she kind of can't believe it.  When I came in "healthy" before chemo my white blood cell count was 5.  The next week after chemo it was 11.  The next week it was 13.  This time it was THIRTY.  This is very very good.  So good that they would not give me another white blood cell booster shot after this chemo round.  We talked about this for a bit.  The only worry is that since they are not giving me another booster shot, the numbers could go down to very low levels and make it that I could not get chemo again in 2 weeks.  But Dr Kurup thought that was a long shot since they had been building every week.

We also talked about my anemia...which Dr Kurup disagreed with Dr Molly.  She did not think I had become anemic since my numbers were just so good (that would be red blood cell count, not white).  And while it was not impossible, she didn't think it was likely.  Dr Molly still disagrees with Dr Kurup on this one.  I know my own body, I know what I felt like.  I was anemic.  And ever since watching my iron intake I haven't had any more symptoms that were similar. 

After we were "cleared" we headed out into the infusion room.  It's a room of about 30(?) Lazy Boy recliners that are lined up against the wall.  The nurses station is in the middle of the room, surrounded by glass so that they can monitor us.  On this session, it was just Bob and I.  We did our usual - turn the chairs around so that they faced the window, not the nurses station - and got settled. 

For A & C you always start with anti nausea drugs and steroids.  After that is done (about 30 - 45 minutes), the nasty A starts.  I was nervous.  I felt like I was going to throw up once the steroid drip was done.  Adriamycin is a particularly nasty drug.  I asked Karen before if there was another chemo that was worse than A.  She thought for a minute and said, well there are few others that tie, but nothing is worse.  It's pretty nasty.

It is administered in a large syringe (not a drip bag on an IV pole like everything else).  The nurse needs to sit with you and hand administer it to make sure it doesn't get out of the IV.  This whole process is totally nerve wracking for me.  It takes about 15 minutes. 

Before Karen came over with the A, I told Bob - ok, it's time for the A, you need to distract me and just talk to me the entire time, ok?  He nodded.  Karen come over quietly with the large syringes and hid them underneath a towel.  She started chatting with me, laid another towel over my IV, and went to work.  She didn't say anything about it, but she was hiding it from me so that I didn't have to watch her put it into my IV.  Bob didn't even get a chance to get one word in, Karen and I chatted the entire time.  Then fifteen minutes was up, she was done, gave me a wink, squeezed my arm and started the C drip.  I could relax.

The C takes a little under 2 hours, so we sat there, read magazines, passed the time.  When the drip was done, the machine on the IV poll beeps and Karen came over, unhooked me, gave me a big hug and said - You did GREAT.  She knew I was a total basket case the entire time.  She never addressed it, just reassured me, tried to make me comfortable so that I could get through it.  And after that I was officially HALF WAY DONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The bad week was the usual, it seemed to be a little better than most.  When Dr. Kurup asked me about it 2 weeks later I couldn't even remember anything significant about it, to which she replied "well THAT'S a good sign!".  They all kind of blur together now.  A lot of sleeping.  A lot of laying down.  Nothing too exciting.

My last round of chemo was a week ago on July 7th.  It was the start of Taxol infusions.  Just 4 T infusions and I am done.....

Again, business as usual.  Although this time Dr Kurup didn't wait for my blood to be drawn to talk to me.  We chatted about Taxol and the side effects (aches and pains).  She said if you get them, take some advil. We then left for the infusion room and set up shop. 

Karen didn't come over for a while.  When she finally did she look a little worried and asked me if I had gotten a fever over the past 2 weeks? No.  "OK, well your numbers were not good so I just had to track down Dr Kurup to see if we would even give you chemo today.  She said we could give you chemo today but you will have to come back tomorrow for a white blood cell booster shot" (originally I would not have had to do this since that shot is really only needed for A, not T).  I said "um, ok.  what was my white blood cell count?"  karen replied - "One." ouch.  It had gone from 30 the time before to 1.  I asked Karen if there was anything I could have done, and she said no- it just seems that my marrow is very sensitive.  But it does respond to the shot, so that is good. 

For the T, they give you a much weaker anti nausea since T does not typically cause nausea.  Karen started the drip of the anti nausea / steroid and talked to me about the side effects of T.  It can sometimes cause an allergic reaction when administered so watch out for sharp pains in your back or shortness of breath and tell me right away.  ok.  Because of the allergic reaction they also give you a drip of benadryl.  After the benadryl I pretty much passed out and took a 2 hour nap.  T takes about 4 hours to administer.  I woke up, my mom had gotten us lunch, started to eat my sandwich and JAB sharp pain in the back.  My mom got Karen's attention, she came over, immediately stopped the drip.  After a couple minutes checked in again - how do you feel now? Fine, no more sharp pains.  Ok.  Started the drip back up.  A few minutes passed and then all the sudden I started wheezing...felt like asthma attack.  This time we grabbed the nearest nurse who stopped the drip again and asked who my Dr was.  Dr Kurup and Karen both arrived at the same time.  Apparently this is not super standard.  Karen looked worried.  Dr Kurup said that I could either get more steroids or get more benadryl and try starting again.  Karen and I are on the same page, she gave me more benadryl.  zzzzzzzzzzzzzzzzzzzzzzzz I took another 2 hour nap, did not have any more reactions.  But was pretty much comatose.  2 drip bags of benadryl in 4 hours and Karen was suggesting I get a wheel chair to leave.  It was now 5 o' clock and we were just finished with the T.  We had been there since 10am.  I texted Ella and let her know I would not be coming for acupuncture since I could barely keep my eyes open.  She texted back and said no worries, come tomorrow...and remember to take your epsom salt bath tonight.  Crap. I forgot about the bath.  All I wanted to do was crawl in bed.  But I heard Ella's voice when I got home so immediately ran a bath and I will have to say immediately felt better.  Had dinner with Bob and my parents, went straight to bed.  Where I just stared at the ceiling all night.  I got up Friday morning and had ENERGY (where did this come from on no sleep?) so went and ran some errands, got my white cell booster shot, went in and saw Ella for my appointment.  Ella took my pulse and was said WHOA you have a lot of steroids pumping through your veins right now (ah....that is where the energy came from).  I generally felt pretty good and was very optimistic.  Maybe I won't have any side effects from the T?!  I "woke" up Saturday morning after no sleep again.  Took a couple naps.  Hmmmm, don't feel that bad.  This round may not be that bad.  Then Saturday night the aches starting creeping in.  I felt like I had the flu.  I took some advil, took a beer into the bathtub and hoped that would make it better.  Nothing.  Not a dent.  I ached all over.  Went to bed.  Again little sleep.  Sunday I felt like I had been in car wreck.  My entire body throbbed in pain.  Back to bed.  More advil.  More nothing.  Eventually the pain just settled like sand into the lower half of my body.  Sunday evening I felt like I had two broken legs. I was having a hard time walking.  My mom urged me to call the Dr.  No, no....I will wait until tomorrow...maybe this will pass.  9am Monday morning, two broken legs still throbbing, I called the nurse line.  Nurse Julie called me back right away.  HELP I feel like I have 2 broken legs and advil is doing nothing.  She asked if I had anything left over from surgery.  YES I have vicodin!  She said ok, start there, take those and if that doesn't work then call me back and we will prescribe something stronger.  I left this conversation with a few thoughts - first of all, I HAD VICODIN THE ENTIRE TIME AND COULD HAVE TAKEN IT? and second of all, what do you mean "if that doesn't work"? %$^*&  I took 2 vicodin and settled back into bed.  Within a half hour the pain was starting to get better.  Within an hour it was GONE COMPLETELY.  Bob came in and checked on me, concerned that I was still in pain, did I want to call Ella and make an appt?  I didn't even open my eyes, just groggily said "oh no.  I feel gooooooooooood.  the pain is alllllllllllllllllll gone."  He laughed and said he was glad the pain meds were working and I fell into a deep and very yummy sleep for the first time in days.  The rest of Monday was a vicodin haze.

Tuesday I was hopeful that maybe I didn't need vicodin anymore?  Got up made breakfast.  Dammit.  Pain starting to creep back up the legs.  Back on the vicodin.  Tuesday wasn't as fun as Monday.  I felt groggy, didn't want to be taking these anymore.  Still needed them.  Napped all day.

Finally yesterday I got off the vicodin.  It took a while to shake that medicated feeling.  The pain was just tingly, not too bad.  Not bad enough for vicodin.  I woke up today and the tingling was gone completely.  I was just *sigh* tired.  Still am.  Hoping for my TA DA feel good moment tomorrow morning.