Looking Forward

It has been a long, grueling past seven months.  I am so happy to be stepping out of 2012.

There had been many a day I was not sure if I had the strength to fight on.  But, I think about the tens of thousands of people who have gone through this fight before me and the tens of thousands that will sadly have to go through this after me.  And, I push on.  It is an unfortunate circumstance of my life, but it did not and does not mean I will let it keep me down.

I have been very fortunate to be surrounded by family and friends on this journey.  If it were not for all of their love and support I do not think I would have made it this far, this fast.  Thank you.

There is still much to do.  Another surgery, for one.  Many more shots for the drug trial.  Yearly scans/tests/mammograms/echograms.  Waves to catch.  Balls to hit.  Games to play.  Trips to take.  Much, much more...

And, hair.  Slowly coming in.  Still super soft!!  (take that Shadow, hee hee)

A little positive light to take into the New Year!

Glutton for punishment

Today is the official start of the drug trial and I must be a glutton for punishment.

I am escorted up to the research section again by the nurse in charge of the drug trial.  It is quiet today, no one else is around.  The nurse draws my blood this time.  She misses on her first attempt (argh!) and has to try again.  I pee in a cup again.  One of the doctors on the research team gives me a quick once over - I guess to confirm I  haven't caught any illnesses in the last few days.  We enter the data into the computer and then head down to the infusion center.  It takes the pharmacist about a half an hour to prepare the injections (they need to be thawed).  So we wait.

Waiting sucks.  All I can think about is the pain from the shots two days ago and today I get four at full dose.  Blah.

It is finally time.  These shots are going into my right thigh.  There are two nurses now.  One to hold my leg still and the other to do the injections.  The nurse sprays the area with a topical antiseptic to numb it.  And the first shot goes in.  The pain from this shot is off the charts!!! This is so not fun!!!  The antiseptic takes away the initial sting of needle going in, but the fluid that follows hurts - 10 on the scale hurt.  I get a couple of minutes to regroup and they do the second one.  This one is two inches off to the side and does not hurt as much, maybe only a 7.5.  Again, I get a couple of minutes to regroup.  The third does in two inches below the first on the top side of my thigh.  A little less pain than the second.  Regroup.  And finally, the last.  This one goes two inches off the side from the third, and it hurts!!!  Almost as bad as the first.  Argh!!!  Damn cancer!!!

Now that the torture session is over, I have to be monitored for an hour before I can go home.  So I lay back in the recliner and watch tv on my smart phone.  The hour passes, they take my vitals.  All is good, no allergic reaction.  I get to go home.  Yay.

I have to monitor the injection site for the next 72 hours for any anomalies.

Unsuccessful expansion

The pain today was too much.  After all these months and all the needles, I finally had a poke that I could not tolerate.

What was to be a routine visit to the Breast Center for an expansion didn't turn out so well.  Who knows why my body decided today was a no.  The doctor thinks that the port was under a nerve that had just woken up.  Maybe.  Maybe the last week of poking and scans finally caught up with my body and mind.  Maybe the frustration of the everything has reached its limit.  I have no idea.

I do know that when the doctor put the needle in the port the pain was more than I could stand.  She took it out, gave me a few minutes to regroup and tried again.  Again, the pain was too much.  She took out the needle and gave me a little more time to regroup.  For what ever reason, my body was not having it today.  I did not want another attempt.  It was just too much for me today.  So no expansion today.

We discussed taking some Ativan and maybe Tylenol for next week to help me get through the expansion.  Each week I get more feeling and it is only going to get more sensitive as time continues to move forward.  I am a little dejected.  I want so bad to be finished with the reconstruction.  I want to get back to my activities.  I am tired of sitting on the sidelines watching.  So, we shall see what happens next week.

Part two of next phase

Today I get "test" shots for the research drug trial I am participating in.  They are testing for possible hypersensitivity to the study drug (allergic reaction).

As per usual, have to stop by the vampire station to have blood drawn.  I also have to do urine tests for the drug trial.  There really isn't a dignified way to pee in a cup, is there?

I meet with my oncologist to discuss how I am doing, side effects and all.  My blood work is finally back to normal, all the levels are good.  The hives/itchiness are not as prominent these days, which is nice.  The water pill is working nicely, much of the bloating in my face and arms has gone down.  Still have some in the abdominal area, but it is a bit more comfortable than before.  Still only have one pair of jeans that fit though.  I have some fluid build up in my hand from the lymphedema that does not seem to be going down.  The doctor is going to give me a referral for physical therapy.  

This lymphedema thing really sucks!!!  I do my exercises everyday.  But, it only takes a little stress to activate it.  I'm still trying to find the appropriate recovery time for using my left arm/hand.  Even doing simple chores like washing dishes seems to lead to some swelling.  Very frustrating!!!

Next stop today, I get to go upstairs to the research facility.  It's a secure part of the Cedars Cancer Center that you have to be escorted in and out of.  Serious business.  

And, now the fun begins.  More needles.  Blah.  Today I am getting two shots.  A small dose of the study drug in one and a control shot of saline in the other.  These are to be administered into my left thigh.  Oh, Yay!!!  When I initially agreed to this I don't think I had ever had a shot in my thigh.  Not really pleasant.  Nope, not at all.  And these were only small doses.  Can't wait til I get the real ones.  Not!!  

Really... Argh!!

So the vampires screwed up my blood draw from two days ago.  Had to make a trip to the Cancer Center at Cedars to get poked.  BLAH!!!

Day two of physical scans

After a long day yesterday, back for more, bright and early at the Cedars Campus.

First up, check in 8:00am for the bone scan.  A nice shot of radioactive material to start the day.  Yay!!  I don't think my right arm will ever get used to all the poking.  Thank goodness for Southpaw.  He is with me for every needle poke.  Although, if he could feel, he would be pretty darn tired of me squeezing the life out of him every time I get poked.  Again, it takes some time for the lovely chemicals to travel through my body so I am off to the Breast Center to get an expansion done.

Another needle, oh yay.  The expansion went well.  Painful stick into the port again.  I was able to tolerate about 50ml of fluid this week before my pectoral muscle felt like it was gonna pop out.  I take a minute to compose myself and then walk back across the street to the Imaging Center for my bone scan.  Bone scans are easy, you just lay still on a cold slab while a giant machine slowly moves across your body.  No more needles involved.  But, the room is very cold, so they layer me up with a couple of blankets.

After my bone scan, I grab a sandwich and then head back over to the Breast Center again.  This time for a mammogram on my right breast.  At least there aren't any needles involved!!  Although, getting your boob smooshed by a cold machine isn't much of a picnic either.

A little shorter day than yesterday, I am done by 2pm.  Exhausted though, so home I go to rest.

The Next Phase

The next phase of my cancer treatment begins.  Tamoxifen.  This is the daily pill I will be taking for the next five years.  My cancer was a hormone positive type and this drug will block estrogen production in my body.  Common side effects are hot flashes, nausea, fatigue, mood swings, hair thinning - basically the same as my chemotherapy just not as intense.  Oh, yeah!  But, I may or may not have them so we shall see.  And, I still have a couple of lingering side effects from the chemotherapy - the hives/rash are still with me, although they are starting to taper down a bit.  The doctor did finally prescribe a "water pill" to help with the bloating - YAY!!!  The doctor also informed me that I qualify for the drug trial.  So that will begin next week.

And, my hair is starting to come back.  It is soooo soft, just like Shadow's fur.

Today is a busy day as well.  Aside from my routine oncologist visit, I have scheduled an echocardiogram and CT scans of chest, abdomen, and pelvis.  These are part of the yearly physical exams I will have for at least the next five years.

CT scans = yummy smoothy and IV in arm.  Let the fun begin.

Radioactive Smoothy

IV for CT scans, the nurse that put this one in was not very good :(

After a painful IV placement off to the waiting room.  It takes the smoothy a couple of hours to travel through my body, so trying to get comfortable and watch netflix on my computer.

Started my day at the Cedars campus at 8:30 this morning, finished at 6:15pm.  Needless to say, very tired.  Now to go home and regroup for more tests and doctor visits tomorrow.

The Return to Expansion

Had my first expansion since September.  We took a little break because my chemotherapy treatments were taxing enough on my body.

The doctor informed me that we are about half way with the expansion process.  They think that I need about five more expansions before I will be ready to swap out for the actual implant.  In the time that has passed, I have regained more feeling in my breast tissue.  There is definitely pain when they stick the needle in the port.  They put about 60ml of saline into the expander today.  I can feel the expander push on my pectoral muscle more now too.

Expansion Needle

Expansion Supplies

Good times!!  From one torture device to another.  Seems that my life is all about the needles and will be for some time.

Follow Up

Just another day at the Cancer Center, stop by the vampire lair (check), have vitals taken (check), see the doctor (check).

The hives are still crazy.  All over my body, different spots each day.  So annoying.  Plus the benadryl has kept me in a fog these past three weeks.  I just don't feel myself yet and it's been six weeks since my last chemo treatment.  I'm all bloated still, the itchy hives are driving me nuts.  Argh!!!  When will it end?  The doctor is switching me to Claritin and Zantac for the hives.  We shall see if this helps.

Red hives on my arm.

Swelling and hives.

I also decided to have them do the blood test to see if I qualify for the research drug trial.  It seems to be one more safeguard to preventing the breast cancer from coming back.  And, for all the crap I have been through these past six months, I am all for keeping it away if possible.  Thus, there are really no guarantees in life, but I want to know that I gave it my all, 110%.

Leave it on the field, as they say.

First use of my arm

Had the opportunity to not "baby" my arm  today.  Went to the driving range and hit some balls.  It was nice to get out and do something again.  I wore my compression arm sleeve as directed.  It felt good while I was out.  About five hours after, my hand started to show signs of fluid build up.  So, on went the gauntlet.

Fashionable Gauntlet - all the rage

This will be interesting.  I wonder how long it will be swollen.  How big will it get?  So far it is not too swollen.  This is good.

Road to recovery is slow

So happy that this past weekend I didn't have to go to the infusion center for treatment.  Nice to be over what I think has been the worst part of this journey.  Woo hoo!!!

Instead, I had one of many routine visits to my oncologist.  Of course, stopped by the vampire's lair to give a bunch of blood, par for the course.  My blood work looked good - white and red blood counts are normal, only my liver is still working overtime which is considered normal for the chemotherapy drugs still in my body.

The nurse said it will take up to three months for my body to be fully recovered.  Blah.  My energy level is still pretty low.  Some days I have a full days worth of energy, other days only about three to five hours worth.  The newest side effect started to show up last week - itchy hives.  All the chemo drugs are trying to get out of my body, any way they can.  The doctor suggests I take Benadryl for the hives.

The doctor also wants me to consider being part of a research drug trial.  The trial is for a new drug to help with the prevention of recurrence of a certain type of breast cancer.  They would have to do a blood test to see if I would qualify.  The drug is specific to node-positive breast cancer with low to intermediate HER2 expression.  The drug is in its final stage for FDA approval.  Previous phases have shown to stimulate the immune system to recognize and kill cancer cells that have HER2 on their cell surfaces.

I took the information and will think about it.

Lymphedema Physical Therapy

Had my first day of physical therapy for the lymphedema.  The fluid has been slowly building up in my arm.  There has been a tightness and pain, along with limited mobility in my left arm for awhile.  There has not been any visible swelling though.  Since I really have not been in any position the past few months to use my are at normal capacity I was not aware of what was really going on.

The therapist explained that the tightness and pain was fluid built up in the chords.  So he basically is cracking or popping (that is what feels/sounds like) the fluid out of the chords.  He uses pressure and stretching to do this.  It isn't very pleasant, but it is making my arm feel better.  Next, he shows me some exercises I need to start doing to help keep the fluid flowing in my arm.  I need to do these exercises everyday.  He also said I need to not "baby" my arm and start doing regular activities.  That sounds like a green light to me... now what shall I do first.  (Although, my reconstruction surgeon still has me on some restrictions.)

Short, quick visit.  I am coming back in two days for more "cracking".  Woo hoo.

103 point...

It really doesn't matter what came after the point, by the time the nurse was writing down my temperature in my chart on Thursday, I was ready to be put down.

This last round apparently wanted to go out with a vengeance because that is how life goes.  After all the planning for pain management and hydration, it all went out the door Tuesday evening when I started to get a fever.  So on top of all the "regular" symptoms of my treatment (bone pain again in the legs, but also arms and head, plus nausea) now everything was getting worse.

Tuesday night consisted of being really hot, then waking up in pools of cool sweat, followed by chills that felt like they would not go away.  Taking a pain pill, falling back asleep then waking up a couple hours later again soaking wet, hot, then chills.  This went on all night.  Thought by Wednesday mid morning it had gone away, but by afternoon the chills that would not subside came back.  By now, I have absolutely no appetite but am drinking lots and lots of fluids.  I barely remember Wednesday night, just hot and cold chills off and on all night, plus I was knocked out on pain medication.

Thursday morning was feeling horrible, had chills again.  I managed to force some cream of wheat and herbal tea in me before going to doctor.  By now I was a little delusional and not really aware of what was going on around me.  Managed to check in, stop by the vampire and then fell asleep in the waiting area.  The nurse came to take me back to see the doctor.  She took my vitals and recorded my crazy temperature.  The doctor came in and started asking me how I was feeling.  I really don't remember much of this conversation.  He was trying to determine where I might have an infection on my body. He wanted me to stay and get fluids and IV anti-biotics.  So he wrote up the order and what felt like an eternity, they booked me back into the long-term infusion wing (fell asleep again in the waiting area).

So another cobra bite, which was very painful because my whole body was uber sensitive at this point. Within a few minutes after I was hooked up to Ethel again, I fell asleep.  Four hours of fluids and medications later and I was feeling better.  My temperature was back to normal, they gave me anti-nausea meds too so my stomach was feeling good.  I had part of a sandwich, apple sauce, banana, and apple juice before I left.  The most food I had in quite a few days.  I was still weak and groggy, but was ready to go home.  Got home safe, and went straight to bed for more sleep.

Friday was spent in bed recuperating.  I ate small meals throughout the day, drank lots of fluids and slept.  The doctor also gave me an antibiotic to take the next seven days to get whatever mystery infection is attacking my body.  I go back to see him on Monday.  Hopefully everything will be back to "normal" and I can get on with my life again.

The Beginning of the End

Last round of chemo starts today.

I'm in good spirits today.  This is how I should have been feeling earlier in the week of almost "normal" instead of feeling completely Blah all the time.

Stopped by the vampire station to visit the "Pauls."  I was the only one in there so I got lots of attention.  We had a few laughs adding to my good mood.  Had a good chuckle over the giant bruise from last weeks draw.  Paul #1 said he wouldn't give me a nice tattoo like that, he's too good at this :-).  We shall see.  Had my four viles taken, then off to treatment room.

Some more laughs at reception with my buddy Carlos.  He was the one who checked me in for my very first treatment way back when.  He always greets me with a smile, asks how I'm doing.  I don't feel like a patient when he checks me in, more like a regular "customer" at my favorite watering hole.  I like that.  Everyone here at the Center has been wonderful, they remember me and make me feel good.

MyBuddies are ready, too.

A little Ativan to get me ready to go.  I'm in such a merry mood, thought for a brief second maybe not taking, but why change something at this point.  Don't want to make it unpleasant now, right?  Gotta stick with what we know works!!

After getting set up, vitals taken, routine questions asked time to get started.  The cobra does it's job, I have Southpaw in my other hand shoved up into my face (a nice squeeze of his belling and a bite in his neck).  One, two, three - Argh!!  Bite done, and we are already to go.  Yay!!

Last Cobra Bite

Ativan makes having this done so much more easier :-).  I take it while we are waiting for the lab work on my blood to come back.  This time they took longer, so the Ativan was really kicking in and I didn't feel too much pain today.  Woo hoo!  (And, yes I have a tattoo - but the pain of getting that is much different than having a needle stuck into your vain and fluid pumped it.  My vain gets stressed at impact and it as this horrible throbbing, the Ativan - known for anxiety also helps with relaxing muscles in the body, which in turn helps alleviate the spasming that I am feeling in my arm at point of impact.  Yay, Ativan!!)

Loaded up Ethel with backs of drugs and fluids to start:

Ethel with final set of pre-meds

And, away we go!!

Nothing good on the tellie this early in the day, so... let the shenanigans begin!

Nurse Shadow at it again

Nurse shadow is at it again.  Setting up Ethel to give my drugs to my surrogates this time.  Not sure Lil' Rey and Southpaw are going to be very happy with her.

What's going on here?  What is this crazy madness?

My Sister checking in on Shadow's activities

By the fourth round, Shadow thinks she is a pro at this :-)

I'm ready for a snack:

Chilling out during treatment.

Hooked up to Ethel, semi watching morning Sports Center loop while playing on the computer.

Wrapped up and ready to go...

Cobra bite wrapped up like a present

All set for tomorrow.

So Tired

Having a weakened immune system is not fun.  I am so tired.  I spent almost the entire day yesterday sleeping or lying on the couch watching television.  Not the ideal Saturday.  This is supposed to be my almost "normal" weekend to do stuff before my next round of chemo.  I miss doing normal weekend stuff.  I feel like life is passing me by, everyone is out enjoying things and I am stuck home with little to no energy.  Really tired of being sick.

Two days after the vampire had to bite me a second time, the bruise is bigger and darker.  Mind you, the bite is a tiny little needle prick, yet the bruise is a little over an inch long.  Blah.

Vampire bite no.2

My body takes so much more time to heal.  The cobra bite from my last treatment took almost two weeks to go away.  This one will probably take the same amount.

My appetite is so tiny.  I am constantly forcing myself to eat.

My plate is on the left.

Weekly Visit - blah

Paid my weekly visit to the vampire today - blah.  Apparently I am a bit dehydrated.  Vampire Paul #2 (there are two vampires in the lab named Paul :-), we joked that everyone that works there has to be a version of Paul; Paulo, Paula, Pauline...)  Anyway, he stuck me in the usual spot - inside the elbow, which is still slightly bruised from last week's visit.  And, nothing came out!  Guess they have been taking too much blood ;-).  It is very freaky to see the needle stuck in and no blood flow.  So, he had to use another vein further down my arm to take my blood.  That one hurt - blood came out though.  Now I'll have two vampire bite bruises this week.  Blah.  I'll need to make sure I drink plenty of fluids this week so my veins are ready for next week's round of chemo.

This is my second week after my latest round and still feeling blah.  It seems that it is taking longer to recover this time.  I guess by the third time you strip down your body's immune system to basically zero, the body just doesn't bounce back as easily.  The initial harsh side effects were better managed this time, but the other side effects are lasting longer.  I have very little appetite.  There is this horrible metallic taste that is constantly in my mouth.  It makes it hard to want to put anything in there.  And, when I do it tastes like metal.  The nurse did say I can have ice cream and milk shakes to help pump in some calories.  Yay!!  Two of my favorite things.  But, I cannot have too much because my liver is working over time this round so I have to limit my fat intake.  Really, there is no winning with this crap!!  And, since my liver is over worked I have very low energy.  Again, not winning.  My sleeping is all messed up, I find I have to take naps which means I wake up in the middle of the night for hours before falling back to sleep.  It's all so crazy.  My legs still feel very weak and wobbly.  The nurse is going to see if the doctor thinks that in my next round of chemo another dose of steroids might help.

Feeling so blah and the realization that it all starts again next week just sucks.

A bright spot in all this crap is getting some quality family time for our annual get together in Carlsbad. Lounging around, playing games (Soxzee and mini-dolphin golfin), laughing at stupid stuff - normal activities.  Downside is they all get to hangout in the pool and hot tub all afternoon and I have to be in the shade covered up - blah.  Still, it was good to get out of my house that I've been confined to for the past three and a half months and enjoy a change of scenery.  My family is very supportive and we have a good time together.  My dad and bro even shaved their heads, so I wasn't the only bald one at the table.

Carlsbad Robot Marble Puzzleman

One more week before my next (and final) round of chemo.  Hope to get some strength back beforehand.  Plus, I am tired of feeling BLAH!

Third time, not a charm

Slowly coming out of the chemo haze.  It doesn't get any easier no matter how many sessions you have under your belt.  It's very annoying only being able to lay around and do nothing.  I can't really even get invested in a movie or television show because my mind is in a fog and the pain in my legs is quite the distraction.  Yes, it defied my odds making and the pain went back to my legs.  This time it attacked the entire leg from pelvis to ankle.  It is an annoying ache that just won't go away.  There are moments of pain spike that are oh, so much fun, too.

I am just a giant blob either parked on the couch or in my bed.  I have to force myself to eat.  I have no appetite and my mouth feels like it is covered in chalky plaster.  My taste buds are all out of wack.  After about two bites of any food or drink, my mouth turns the plaster into goo and eating is no longer a pleasant experience it is only a necessity to keep me alive.  It is a horrible chore that I have difficulty with.  I actually despise the idea of eating right now.  My digestive system is paying the price when I don't get enough nutrients in my body.  But, surprisingly I have not lost any weight.  My body is retaining a lot of water right now, which is also uncomfortable.  Adds to the whole blob image.  Then there is the wobbly legs to also add to the image. A simple little walk around the neighborhood wipes me out.  My legs feel like jello, weak and unsteady.  They feel like they can give out at any moment.  I always felt my legs were the strongest part of my body, where I carry my most muscle mass.  It is disturbing to feel them so weak and unstable.  And, the HOT flashes!!!  In an instant my body will go from normal to insanely hot.  It is freaky.  Especially when I am trying to sleep, being waken up by the hot flash is like being dropped into a volcano.

I am so over being sick.  It sucks big time and I don't know how other people deal with it, but it is driving me crazy.  I can't wait to have my life back to normal.

Round 3 day 3

Day three of infusion.  Uncomfortable day for me.  Woke up with some nausea and no appetite.  Cobra bite was itching like crazy last night and this morning and of course I cannot scratch it since it is all wrapped up.  Again, I am in the short term room, and the recliner chair is not comfortable.  I am tired today and it is not easy to sleep in.  My lower back is getting tight, cannot get comfortable.  Slept for about an hour, then hot flash woke me up.  Not a happy day today, thus far.

The anti-nausea meds are slowly kicking in, but I still do not have an appetite.  My throat is getting soar, trying to drink a lot of fluids.  They also gave me some Claritin in hopes to help with the bone pain.  It is an experimental thing, so not sure if it will work.  But, open to trying anything to tame the pain.

Seems like the side effects are kicking in early this time.  Guess I'll be starting my side effects diet early this time. Gathering all my supplies to get through my three days of full blown side effects HELL.

Provisions for side effects.

A nice simple diet of cream of wheat, toast, apple sauce, fluids and drugs.  And, yet I haven't lost any weight during treatment, which the doctor says is good.

After two rounds we have come up with a game plan that seems to keep me as comfortable as possible for the worst of the side effects (which mainly entails making me sleep a lot).  It is very similar to round two's game plan with a few tweaks.  Still there are a couple of unknowns (like which major bone group the Nuelasta is going to work its magic this time - even money on the arms, first round went to the skull/spine, second round fibula/tibia/ankles - odds for going back to those areas, hmmm, I'd say 10-1; come Monday we shall see).

Round 3 day 2

Another day down at the Cancer Center.  They are renovating the long term infusion rooms this weekend, so I am in the short term wing.  Not as comfortable (no bed, just recliner chair), not as private, and no good cable stations on the tv. Blah.  So I decided Shadow should give my Neulasta shot to Lil Rey in protest.

Shadow playing nurse on Lil Rey

Have to do something to amuse myself for 5 hours with no cable.

Round 3

Here we go again.  After a quick stop to see the vampire (sucked out 4 viles of blood), on to the infusion room.  The cobra was all ready and waiting, tools laid out for the attack.

Cobra Tools

A little Ativan to help me relax, then BAM cobra bite.  It doesn't get any easier.  It's almost worse, because you know how it feels and you are anticipating the pain.  Survived the bite, now to lay back and let Ethel drip the fluids in.

Hopefully the Ativan will let me take a nap while I am getting infused.  Haven't slept much the last few days.  The stress of this round was compounded by other life "issues."  With only about a week of feeling almost "normal" it is a challenge to take care of everyday life things.  This time I needed to deal with the tax man,  always a stressful experience.  Then, my computer's hard drive went kaput (it's always something).  Very, very sad.  And, of course I did not backup my data recently.  So, sad.  Lesson learned, backup as often as possible!!  Hard drive replaced, now it is a process of reloading programs, music, photos, files.  Something to do while I'm in bed getting infused for the next three days.  Yay, multi-tasking while sick!!

Fell asleep today, a nice deep sleep.  I wasn't even aware that they put the second chemo bag on Ethel.  Guess I was a little tired.  It's good to sleep.

Now starting the proceedings to get discharged today.  See ya tomorrow Ethel.  Leaving the cobra bite in again to avoid any additional "sticking"pain.

Cobra Wrap

All wrapped up, now off to enjoy some food before that feeling goes away in a couple of days.

Chemo Brain

After losing a little over a week to my chemotherapy treatment, I am slowly recognizing how much time is really lost.  All the pamphlets, websites, etc. talk about “chemo brain.” It seems like normal aging of the brain just amped up a bit combined with an advanced form of attention deficit disorder.  Woo hoo!!! Side effects include:  memory lapses (forgetting things that I normally know), can’t focus (insanely short attention span; “squirrel!”), “space out” (I’ll just sit on the couch and it’s like my brain is turned off (I’m not on any drugs) – I have know idea what is going on around me), trouble multi-tasking (can’t have more than one thinking path going at a time), slower thinking and processing, trouble remembering words, etc. (you get the idea).  For someone that usually has a lot going on at once, this is very frustrating.  I can barely get up and running each day as it is.  There really isn’t anything good about being sick.  I know that I am halfway through my treatments, but I am so over feeling like s#*t everyday, for whatever stupid side effect reason.  I so want my old life back, but it is becoming abundantly clear that this will not happen.  And, because of  “chemo brain” I can’t even begin to think about where to go from here.  I am trying my best to take everything day by day.  But it was very frustrating waking up today and realizing that it was the end of another month again and I have so many “normal” life obligations to take care of in the next five days.  All I want to do is go back to bed and wake up from this awful dream.

Battle of the Side Effects

After a three-day battle of side effects, I am finally feeling better.  This round was not as bad as the first.  Still wasn’t a picnic, but managed to get through much better with new pain management plan.  The nuelasta decided to work its magic in my legs this time.  From my ankles all the way up to my thighs, both legs felt like they were broken.  A constant ache that lasted 24/7.  I spent three days in bed to keep my legs elevated to help alleviate the pain.  Started pain medication earlier to keep the pain in check.  Basically, it would knock me out so I wouldn’t notice the pain.  I slept a lot during the three days.  A lot.  I barely remember being awake.  Obviously needed the sleep.  The extra day of fluids and medication helped keep the nausea under control this time.  It was much more manageable than last time.  I didn’t get dehydrated and didn’t have the constant pain in my gut like last time.  It still sux, just happy that this time didn’t suck as bad as the last.

Round 2, day 3

Did not sleep very well last night, barely got four hours.  Tossed and turned a bunch, could not get comfortable.  It’s been hot all weekend, plus the side effects were slowly kicking in.  Hoping another day of anti-nausea meds and fluids will help.

Straight to the infusion room, no stop at the vampire, plus still have iv port in.  All plugged into Ethel, looking at taking a nice long nap today if possible while getting my fluids. 

Round 2, day 2

No stop today to see vampire and the cobra left the iv port in yesterday so no sticking me today.  Yay!!  Celebrating the little things.  Plus, I got the baseball game on my computer and college football on the television.  Almost like I’m at home doing my typical Saturday fall routine.  Only difference is I’m hooked up to Ethel getting fluids and anti-nausea meds.  Not too bad today, so far.  But, I do have to get the nasty Nuelasta shot before I go home.  The crappy part of the day, blah.

Day one, check

Got through day one pretty well.  After treatment, went home and napped.  Then, went out for a little walk in search of dinner.  Found a nice happy hour down the street.  Enjoyed some food and ginger ale, then walked back home.  Feeling pretty good, although I am heavily drugged.  And, now it’s bedtime.  Need my rest for day two.

Round 2 - blah

The beginning of a three-day set at the Samuel Oschin Cancer Center on the Cedars Sinai campus.  Whippee!!!

Stopped in to see my buddy “Paul the Vampire” first to have blood drawn.  He is a very good vampire,  I barely felt much, just a little prick, had to give him four vials today. Blah.  Next, off to the infusion center.  Today they have me in the short-term room (the long-term room is booked).  The cubicle is smaller, just a recliner and chair, not a lot of counter space for my stuff.  It does not have a bed, so I am quite bummed. I usually get knocked out by the drugs about and hour and a half into treatment.  Took a few minutes to calm down (I am not a fan of change).  Had a little Ativan to help me relax.  Wes, the cobra for the day came and stuck me with his fangs and inserted the IV.  This one is always worse than the vampire because they go further into the vein and it starts to spasm.  It takes about ten to fifteen minutes for the area to calm down.  Yay Ativan!!  Big Blah overall!! And, we are now up and running, hooked up to Ethel.  Now we wait about four hours for Ethel to drip meds into my system.  Good times!!  My little treatment buddies are here to give me something soft to hug and make me comfortable.  And, as always, entertain me!

Curious Shadow likes the blinking lights and the clicking sound.  And, of course the tubes.

Southpaw didn't want to be left out of the action.

Bye, bye hair

For the past four days the hair on the top of my head has been starting to thin out.  At first, it was a few noticeable strands in the shower while I washed my hair.  Next, a little bit more, again in the shower, plus some more while combing out afterwards.  Then, a few strands on my pillow when I woke up in the morning and even more in the shower that day.  Scratching my head.  Taking off my hat.  Basically any time I touched my head hair would come out.

Yep, I feel like I’m going crazy.  It is very weird running your hands through your hair and having noticeable little clumps in them.  Freaky!  So, I’m going to cut it all off.  Just like everything else about this experience, I’m a little anxious about doing it.  I know it is only temporary, but the idea of not having hair on my head is a little strange.  I am not a very big "hair" person, heck I didn't even start using a blow dryer until I was in my thirties.  I am just not sure I am ready to be hairless.  However, the idea of continually losing more and more hair everyday is even stranger.  So today is the day to say good-bye to my hair and try to embrace being bald.  Yay?!

It's Thursday, again

Another Thursday filled with medical appointments.

First stop today, physical therapy.  A nice little morning eye opener to start the day, “Lymphedema”.  Because they removed the eighteen lymph nodes during surgery, I was informed this morning that I am at stage one of lymphedema (the earliest of the three stages).  Now, I’m not sure if this is truly the first I am hearing about this because I was so out of it after surgery I don’t remember much of what the doctors told me.  Nonetheless, what I was told was quite annoying, adding to the how cancer is changing my life forever.  Anyway, lymphedema is the accumulation of protein-rich fluid in tissues because of inadequate lymphatic drainage (layman’s terms – missing lymph nodes = not all fluids processed properly in body).  So now I get to monitor fluid build up in my left hand and arm.  Yippee!!  I was shown two simple tests to look for signs of fluid build up.  One involves making a fist and looking at the hills and valleys of my knuckles.  If the valleys start to disappear that means I have fluid building in my hands.  Yippee!!  I also need to wear a compression sleeve and gauntlet on that arm/hand whenever I do any strenuous activity (i.e. all the sports I do except for swimming) to help prevent fluid build up - forever.  Yippee!!  This also explains why I cannot have my blood pressure taken on my left arm anymore (the high pressure focal compression can lead to excessive constriction if not properly used).  Plus, there is a whole list of precautionary things to be aware of (most involve not hurting my left arm/hand in any way, shape, or form).  Yippee!!  Then, we went over some exercises I could start doing to get back my range of motion.  Finally, something good coming out of this appointment.  I will get to have four to six more sessions to work on my range of motion.

Next, it was off to see the oncologist (of course first stopping by the vampire to give more blood).  Today, I am feeling much better than a week ago.  Almost all of my symptoms are gone and I feel close to normal.  We discussed the plan of action for my next round of chemotherapy, which will start in seven days.  He scheduled me in for three days at the cancer center this time.  Day one for chemo drugs, day two and three will be hydration and anti-nausea meds.  And, of course, my favorite, neulasta shot on day two.  The hope is that the second day of hydration and anti-nausea meds will help get a jump on the symptoms and get them under control before they get too out of hand like last time.  There was also a discussion about starting pain medication earlier to get them in my system before the pain from the neulasta shot gets out of control.  And, yes, I did discuss with him the possibility of using a medicinal herbal substance to help with the nausea symptoms.  Since insurance will only cover twelve nausea pills every thirty days, I wanted to have another option.  He of course could not “prescribe” anything for me, however was on board for trying anything to make me more comfortable this time around.

Then, went across the way to the breast center to have more fluid placed into my breast expander.  It had been three weeks since my last expansion.  I am slowly getting more feeling in my surgical area so there has been a little more discomfort the past week.  I have what feels like a hard bruise/bump at the top of the breast area.  The surgeon explained that I was feeling the upper part of the expander.  It is an unfortunate side effect of the process for reconstruction and as the nerve endings start to have more sensation I will feel more of the expander.  Oh, yay!  And, with more feeling means that the poke into the portal is more prominent and so is the fluid going in.  yay…

Five and a half hours of doctor appointments, time for a nap.

Finally

It took longer than expected, but the side effects have mostly subsided.  I finally feel almost normal.  I still have low energy, but have been able to sleep the past couple of nights the whole night.  I still have a small appetite and need to watch what I eat to keep my upset stomach under control.  Slowly introducing a little more variety into my diet each day.  One can only handle bland, boring foods for so long.  I miss all my yummy foods!!  With that being said, I will attempt to go about my life as normal as possible for the next twelve days before it all starts over again. 

So, not looking forward to doing this again.  From this past experience, putting together a game plan to stay ahead of as many side effects as possible.  It’s always nice to have a game plan, even if it gets thrown out at game time.

What a Week!!

Side effects came full force Monday morning and didn’t subside until Friday.

The bone pain took over with the strength of a tiny white-blood cell army moving all over my body.  The worst was on my head.  I very rarely ever get headaches and this was the mother of all.  It felt like a had a little creature sitting on top of my head and acting like he was trying to squeeze all the juice out of an orange.  He was there for three and a half days.  The other main area of attack was my back.  Everything was achy, my spine and all the muscles were are war too.  Then, the army sent out scouts to other parts of my body.  One moment my ankles would hurt, at another point my upper legs, then on to points in my arms.  It was never ending.  I was so uncomfortable.  There was no way to lie down or sit up that felt good.  I would take a pain killer, it would knock me out for a couple of hours then, I would wake up in pain.  All I kept thinking was that I have to go through this three more times.  Argh!!!

Then, there was the battle of nutrients.  No matter what I put into my body, solid or liquid, it came out one way or the other.  I already had a very small appetite and very little taste for much.  My diet this week consisted mostly of soft bland foods, Cream of Wheat and mashed potatoes made up the bulk of what I ate.  Sunday and Monday I was on a juice kick, lots of orange juice, carrot juice, juicy juice boxes and some watermelon.  That ended pretty violently on Monday night.  Tuesday and Wednesday was made up more of soft, bland foods and watermelon.  After Monday, juices were not on the radar anymore.  Wednesday morning was the end of the nausea pills, so Wednesday night the abdominal battle took a nasty turn.  Food wasn’t really staying in my body very long as it was, but Wednesday night it was like it was racing through my body to see how fast it could get out.  Not fun, at all!!  Finally had to bite the bullet and took pain killers around midnight in hopes to just pass out.

Thursday I had my follow up appointments with my plastic surgeon and the oncologist.   First, the plastic surgeon.  We discussed how bad I was feeling after my first round of chemotherapy.  We decided not to do an expansion today.  She felt that I did not need to be in any more discomfort than I already was.  Thank goodness for compassionate doctors.  This made me very happy.

Had some time to kill before next appointment.  My friend and I got a bite to eat (I had a plain bagel with cream cheese), then sought out another friend to hang out in her air-conditioned apartment for a bit.  I had been very hot all week with all these side effects so wanted a cool place to try and relax before next appointment.

On to the oncologist.  Stopped by the vampire first for blood draw.  Next, we discussed how my week was going very poorly.  I was still in a lot of pain, having abdominal issues and feeling a bit dizzy as I was sitting there talking to the doctor.  He explained that the intense pain unfortunately could not be avoided.  It is just an unfortunate side effect of the Nuelasta and my body needs it too keep my white blood cell count up.  He was a bit concerned that I still had nausea.  The chemotherapy nausea should have passed a couple of days ago.  He asked if I took the nausea pills, I told him yes, the 10 prescribed.  But, my health plan does not cover more than 10 pills every 30 days so I did not have any more to take.  He asked if I was available to stay and get fluids and more nausea drugs.  I of course said yes, I wanted to do anything to feel better at this point.  Within the hour I was getting my cobra bite and hooked up to Ethel again.  Four hours of fluids and drugs to combat symptoms.  Afterwards, I felt much better.  My head buddy was gone, I had more energy, and I had an appetite.  Unfortunately, I still could not keep food in my system.  But, with the pain mostly gone I was able to get some good chunks of sleep.

Friday, I contacted the nutritionist on my oncologist’s team.  We discussed my abdominal issues.  She gave me some food suggestions to help “slow down” the food traveling through my system.  Also, she said I could take some Imodium to help slow things down.  But, her main concern was that I keep myself hydrated, otherwise all the aches and pains would come back.  So with my list of things to eat and drink we shall see how the next few days go.  I so want this all to be over and feel normal again.

I do want to give a shout out of thanks to all the support people have been sending me all week.  Sorry, I did not respond to most of you.  I was barely functioning most of this week.

Holy Crap Batman

And now ladies and gentlemen, the Side Effects!!  The side effects slowly creep up on you.  I woke up this morning a little tired with some soreness in my surgical area.  Thought I was doing pretty good just after my first treatment.  We walked down to the farmer’s market (3 blocks from my house).  It was early, not too crowded and not too hot.  Headed back home less than an hour later.  This little excursion wiped me out.  Had a little bit to eat.  I don’t have much of an appetite.  I feel full after just a couple of bites.  I am doing okay with my liquids, lots of water and juice.  I have a slight sore throat, but so far able to get down fluids.

It was now mid-morning.  A little bit of nausea was starting to creep up as well as some bone aches in my neck and back.  The ache is like how one feels when they have a really bad flu.  As the day progressed, the pain in my bones also progressed.  The doctor was right when he said my bones would hurt.  The pain became more prominent, sharp, like when you break a bone.  And, the pain traveled all over.  It would be in my legs for a bit, then my head, then my back, my teeth, etc… It felt like every one of my 206 bones were sore at some point today.  It just kept moving all over.  It was hard to get comfortable.  I was trying to tough it out, but by 7:30 it was too much to handle and I broke down and took the prescription pain pills and now I am ready to fall asleep.

Day 2

A bit sleepy this morning.  Did not sleep through the night last night.  Fell asleep at 9pm and was up at 12:30am wide awake.  Had a bowl of cereal, watched some tv on my computer in bed, finally feel back asleep around 3am.  Then up again at 7am to get ready for day two of treatment.

No stop at the vampire today, straight to the cobra.  The bite is a little sore today, guess still sensitive from yesterday's bite.

Cobra Bite.

Got some more Ativan to help with spasms in the vain and calm me down.  Yippee!!  Another round of Dextamethasone steroid/anti nausea, Zofran for nausea and hydration fluids are being administered from Ethel today.  The hydration fluids consist of Potassium Chloride, Dextrose, and Sodium Chloride.  The infusion is 1050ml over 4.25 hours to administer.  Then, a lovely shot of Neulasta in my arm or stomach (I chose stomach), this is a drug to stimulate bone marrow to make more white blood cells.  Typically about 7-10 days after chemotherapy treatments the white blood cell counts can diminish.  The Neulasta is to help promote the production of these cell.  The down side is that my large bones will hurt for a few days while the drug works its magic.  Blah.

Neulasta Shot

I had to warm the shot in my hand to body temperature

Nice big hug from Chemo Buddies as they administer the shot of Neulasta into my stomach.

Shot done, Ethel done, cobra took out IV.  Now time to go home and take a giant nap!!!

First round of chemotherapy treatments done!! Whew!

Today's Lineup

Was very groggy at the end of treatment.  I was pumped with quite a few medications today.  First, there were the pre-meds administered by IV.  They gave me Dexamethasone (Decadron), Ondansetron (Zofran), Diphenhydramine (Benadryl), and Ranitidine to start off.  Decadron is used to reduce inflammation, decrease or prevent nausea and vomiting.  Zofran to decrease nausea and/or vomiting before, during and after chemotherapy treatments.  Benadryl to relieve symptoms of allergic reactions, to relieve or prevent symptoms caused by some anti-nausea medications, and to assist in falling asleep.  Rantitidine is an H2 histamine blocker to help prevent ulcers and improves symptoms of heart burn and stomach pain.  Basically, a ton of drugs in the hope that I will not have bad nausea from the Chemotherapy treatment.  It took about two hours to administer all of these by IV.

The chemotherapy drugs came next.  Docetaxel (Taxotere) and Cyclophosphamide (Cytoxan) were the two drugs administered today.  These are the fun ones.  Taxotere is used to treat various forms of cancer and Cytoxan is used to treat breast and ovarian cancer.  Both have basically the same lovely side effects.  Hair loss (temporary), changes in appearance of fingernails and toe nails, drop in blood cell counts (particularly white blood cells) about 7-10 days after treatment, nausea, vomiting, loss of appetite, mild swelling in hands or feet, fluid retention, muscle pain, fatigue or weakness, nerve sensation changes (burning and numbness), irregular heartbeat, skin rash.  Such a lovely list.  Now, it does not necessarily mean that I will have all of these side effects.  They just want to inform me about what might happen.  The drugs they give me hopefully will counter act many of these.  But, the hair loss and blood count drop are ones that will most likely happen and scare me the most.

And, all this is just day one.  I go back tomorrow for some more drugs and hydration.

Time for a giant nap!!

And, it begins

First day up and running.  We are at the Samuel Oschin Cancer Center on the Cedars Sinai campus (two levels below the street).  I start at the vampire station.  He took 4 tubes of blood.  Then, over to the waiting room for a bit (we were a tad early).  A little anxious about what comes next.  Have a support team keeping me occupied with funny conversation.  Especially about the restaurant like pager they gave me to wait with.  Apparently, I should ask for a table by the window, order a shrimp cocktail, and a filet Chicago style (mooing and walking to my plate – hahaha).  Love my friends and family.  Pager goes off.  It’s time!!

Off to the infusion room where a cobra is waiting to stick an IV in my arm to add in the poisons.  He is a pleasant cobra, very kind and chatting, keeping me preoccupied while he does his work.  He gave me an Ativan before we start to help me relax.  A lovely tranquilizer that is making me sleepy.  Yay, for Ativan!!  Next, he hooks me up to “Ethel”, my new friend at the center.  She is the one who is actually dispensing the wonderful fluids to get me better.  She follows me around everywhere I go.  They start out with fluids and three little bags of various drugs.  Then, comes the hard stuff - the actual chemo fluids.

                                                ETHEL MY HOSPITAL FRIEND

                                       She has a rather wide wheel base for support.

                          A bit clunky to move around, especially when I need to go to bathroom.
But, she is very supportive, holding me up so I don't fall while on the Ativan which makes me dizzy.

I am very comfortable, I have a small little cubbie hole of my own.  I can either chill in the hospital bed or sit in a lounge chair.  I opted for hospital bed.  I have a little menu of food choices, nothing fancy, it is hospital food after all.  But, it is nice to have a little something available to snack on.  I brought my chemo buddies along for comfort; Southpaw, Shadow, and Lil Rey.  I get free wi-fi access so I can peruse the computer for shows to watch.  Awesome!!! This should help the four hours fly by.

                                           Shadow, Southpaw, and Lil Rey

The staff has been wonderful.  I have spoken with the cobra (nurse), the Social Worker, and a Nutritionist so far this morning.  That has helped time pass by too.  Lots more information spinning around in my head.  All good, but lots.  And, having the Ativan is really making it hard to concentrate.  Luckily, most of what they said is written down for me on printouts.  Cause I really don't think I'm gonna remember much of what they said.

                                             Chillin' with Buddies

So far, so good!!