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!!

Surreal Eve

Tis a bittersweet day.  Today is my birthday and also the day before my first chemotherapy treatment.  Naturally, quite the roller coaster of emotions.  It's a happy, distracting, not normal birthday day.

I spent the day running errands.  Checking off "to dos" that have been on a list for quite some time.  Changed the oil in the truck, got my eye glass exam, cleaned up the house a bit, got some food supplies for the next few days...  This busy little day helped keep my mind off of tomorrow.  I barely even thought about tomorrow.  This was quite pleasant since that has been all I have been thinking about for the past week.  Running around all day has kept me occupied and made me quite tired, so hopefully I can get a good night's sleep.

The up side of today was that it was filled with a multitude of well-wishers, both for my birthday and hopes that tomorrow will go smoothly.  The "Happy Birthday", followed by "hope tomorrow doesn't suck too much" sentiment is very strange though.  Its an odd play on the good news, bad news sentence.  You know, "I'm so glad you are here, sorry to hear..."  But, it was nice to feel all the love and support to help keep me in check.  I know I can get through this next phase with all these people behind me.  Thank you all!!  Peace, love and happiness!!

2 Days and Counting

The next phase is just around the corner.  I have been very scatter brained today.  I can’t seem to focus on much.  I have the attention span of a newborn puppy.  My head is spinning.  The unknown of how my body is going to react this time around is making me a little anxious.  Thank goodness for a nice birthday eve distraction.  A few friends and I went to see a special screening of “Singing in the Rain”, one of my all time favorite musicals.  I had a silly smile on my face and was tapping my feet the whole time.  Distracted enough not to let the small muscle spasm in my chest bother me during the movie.  It was also my first night out late, after 7pm (my new late).  I was pretty wiped out after the movie and had just enough energy to get home.  Hoping to get a good night’s rest now.

Feeling good does not mean 100%

I have been off my pain medications and muscle relaxers for a little over a week now. The nausea is gone and muscles aren’t spasming like before.  My stomach has been very happy.  I have my appetite back, although I’m still not eating as much as before.  My head is clear.  And, my energy levels are up.  Aside from the awkward lump on my side I am feeling relatively normal.  However, that does not mean my body is back to normal.

I went to cheer on one of my softball teams today.  It was a usual hot summer afternoon, with a slight breeze.  In the hour and a half I was out at the field I got a little overheated and slightly dehydrated (I was drinking water).  My energy was completely zapped and I had a fierce headache.  Now the challenge is to get everything back in balance again.  A little food, Gatorade, and a shower to start things off.  Now sleep.

Must remember, take things slow!

A show of support from my softball mates (wristbands):

Second time around

Today I did my second expansion appointment.  Still not a pleasant idea of sticking a syringe into my surgical area, but it must be done.  The area of course has some points that are numb and others that are quite sensitive.  The port on the expander isn’t always in the same place because the expander does have a little movement within the cavity it sits in my chest.  Um, a little freaky.  They use a magnetic device to find the port in the expander.  This time the port was in a little more sensitive area so I could feel the syringe going in.  Yep, not pleasant at all.  A nice sharp prick to start off the process.  Then, there is the weird sensation of feeling the expander fill up slowly.  Last week, for the initial fill I could barely feel anything.  They only put a minimal amount in.  This time, I could feel the expander against my muscles and it slowly pushing on them, from the inside out.  Yes, very weird!!  The doctor slowly fills until I say I have had enough, which for me is when I feel my muscle getting tight.  After I have her stop, I can feel a weird muscle spasming in the surgical area.  It is only a short twitching feeling that comes and goes.  It doesn't hurt, it just feels weird.  

It is nice that this process is totally dictated by me.  I am in no hurry to push my body any more than it needs right now.  Especially with what is looming just around the corner.  Since I will be starting my chemotherapy treatments next Friday, the doctor suggested that we should not do another expansion next Thursday.  This way my body won't be in discomfort for my first session.  A small little bright spot for the future.  I'm game for skipping a week of expansion.

Exercise is my Friend

They are correct when they say that exercise helps with recovery.  This past week I have been able to do some exercise.  I have been riding the stationary bike and doing leg workouts in the pool (jogging and kicking).  My body is very happy.  My mind is happy. The healthy parts of my body had been very restless these past few weeks.  The sense of needing to get up and do something is being taken care of now with exercising.  There is nothing like getting the blood pumping through my body, even with less intense workouts than it is used to.  I feel much more relaxed and less stressed.  I have been a bit anxious about the pending chemotherapy treatment that starts next week.  There has been a lot to contemplate, especially the “unknown” factors of how my body will react.  And, after the whole surgery experience my mind has been racing over all the different scenarios that might happen.  Of course, none of them are pleasant.  The doctors and others can give you generalized expectations and relate their experiences, but everyone is just different enough that one cannot predict exactly what will happen.  I am very grateful to be able to do some exercising to help keep the gloomies at bay as much as possible.

My goal is to get as much exercise before I start chemotherapy next week.

Game Plan

Met with the oncologist today for an hour this morning and it seems like a blur.  He explained all the tests that were run on my tumors, tissues, and lymph nodes and how the results worked towards the reoccurrence of cancer in my body.  Nothing like running the numbers of probability to get this math geek’s mind racing.  As we knew, the cancer I have is hormone based which is bad and good.  Bad being it was spreading through the tissues easily, but good because taking the tamoxifen will help keep it from rearing its ugly mutations again.  Also, as expected, the fact that the cancer had worked its way to the lymph nodes increases the likelihood that it could come back.  This also means that if I only to do the tamoxifen the probability that cancer would return was not really in an acceptable range.  This is where chemotherapy enters the discussion.  It will be four courses, one course delivered every three weeks.  Doing this treatment and the tamoxifen afterwards (for five years) works the numbers in my favor, keeping the cancer away.

Then there are all the wonderful things to contemplate for the next couple of weeks.  Side effects.  Yes, I will lose my hair sometime around the second course of treatment.  So not happy about that.  Not sure I have the head shape to be hairless.  Then, because I am otherwise healthy and athletic there is a strong possibility that I will experience bone pain from one of the drugs that helps boost my immune system.  Now doesn’t that just sound pleasant.  I love how having strong muscles and bones is making this experience more painful than most.  They are giving me an anti-nausea pill to take before each session, that’s nice.  And, of course fatigue.  That I already have from everything thus far.  Those are the major ones we discussed.  When the time comes, we shall see how my body ends up reacting. 

The game plan goes live in two weeks, first course the day after my birthday.

Recon phase II

Had a few anxious dreams last night about today.  The idea of taking a syringe to my surgical area to fill up the expander with saline was not sitting well with me the last couple of days.  The memory of muscle pain from the surgery is still pretty prominent in my mind, even though much of the pain and swelling has subsided over this past week. Thank goodness for anxiety meds to take before procedure.

The moment of truth has arrived.  The nurse started laying out tools and materials they were going to use on me.  I could feel the nervousness kicking in.  There was the syringe (large and long), the bag with fluid, and a few other things. The doctor and nurse are very aware of my anxiousness and did everything they could to keep me calm and have me relax.  They both have wonderful bedside manners.  The doctor explained once again what she was going to do and reiterated that she would take it slow.  She explained each step as she was doing, constantly checking to see if I was okay, pain and nervous levels were monitored well.  I felt the prick where the syringe went in.  I could barely feel the fluid being injected at first.  As more fluid poured in, I could feel a little pressure, but it was tolerable.  Again, she reiterated that they were going to go easy today to keep my comfort level good.  When she was finished, it felt more like bruising than stretching, probably because they only put a minimal level of fluid in today.  There was soreness as she cleaned up the area where they entered to fill.  The slightest touch of her blotting away fluids hurt, again more like a fresh bruise.  It will be interesting to see how I feel later on when the meds have worn off

Time to go home and nap.

Cabin Fever

Feeling better still has its downside.  With the swelling diminishing, it makes the foreign object in my chest more prominent.  I feel and look a little like a Dr. Frankenstein ("Fronkensteen") creation.  It is hard to describe.  Almost like a hard rock or hockey puck that you just want to push out.  Kind of like when you get a welt from getting hit by a ball (or something).  A hard bruise that feels totally out of place on your body.  You just want to move it out.  It is totally annoying me.  And, it is uncomfortable.

I also still have limited energy.  Which makes me feel like I’m missing out on life.  I long for the ability to enjoy a full day again.  I am itching to do more.  Sitting around is not my style.  Right now, my energy limits me to about six hours of time outside my house.  Brunch and a movie yesterday again wiped me out.  I didn’t want to spend my evening laid out on the couch, but I had no choice.  I was asleep by 9:30pm.

Patience may be a virtue, but restlessness and boredom are the tools of insanity.

Moving right along

The best I’ve felt thus far.  Last night, I was finally able to lie all the way down on my back.  Woot, woot!  Still with the help of the muscle relaxers, but I did get a decent night’s sleep.

Had my weekly check up today.  The doctor is happy with my progress. The swelling in front has gone done significantly.  The swelling on the side is going more slowly, which she says is fine for now.  We decided to wait one more week before starting the next step, filling the expander with fluid to stretch out my pectoral muscle.  It just sounds like so much fun, doesn’t it?  After all the pain from the initial surgery, I am a little anxious about this next step.  The doctor explained the procedure.  The expander has a portal that allows them to inject saline fluid into it.  Because of the surgery, the skin area is still numb so she doesn’t think that I will feel the needle part.  Perhaps a small constellation prize in the grand scheme of things.  As she fills the expander, it will stretch out the muscle causing some discomfort and possibly a little pain.  She will only fill the expander with as much fluid as I can tolerate. Again, sounds like fun.  It will be nice to have a week with minimal discomfort before bringing back pain.

On a positive note, I got the green light to ride a stationary bike.  Yay!!