Steroids and Sleep

I'm in so much of a fog that as I sit here, I can't even think well enough to figure out what exactly I'm supposed to be typing.  Sunday night I got only a couple hours of sleep because of the pre-chemo steroids.  I went and had my blood work done as soon as the lab opened on Monday morning to make sure my potassium levels were okay for me to start chemo.  I went to my appointment at the cancer center and they hadn't received the results of my blood work due to some sort of delay.  I ended up sitting around for an extra two and a half hours while they hounded the lab for my results.  The results finally came back and confirmed that I am not in kidney failure.  Yippee!  Pump me full of steroids, give me benadryl in preparation for an allergic reaction, and let the chemo flow.  I left the cancer center and went straight to an appointment with my plastic surgeon.  He wasn't very concerned about the infection on my half breast.  But he did inform me that I am definitely stuck with only half a breast until I've completed chemo.  Lame... but so much better than the swollen looking pectoral muscle that the other misplaced expander caused.  Monday night I got one hour of sleep.  Those steroids make it almost impossible to sleep.  Every time I finally started to fall asleep my sweet baby boy would wake up and he was then for the first time in his short little precious life exposed to curse words being spoken under my breath.  I seriously felt like I was going crazy because I was so exhausted and delirious and then I felt so extremely guilty for being frustrated.  Then I felt like maybe a dirty diaper might be appropriately placed on top of my husband's face while he was snoring away through the baby's crying.  That last thought made me feel a little better even though it didn't end up happening.  After two nights of almost no sleep, I finally crashed yesterday at about 3 o'clock and slept until this morning.  I did wake up to hang out with Zeek for a couple hours at midnight and then had this weird episode of chills and nausea that woke me up again early in the morning.  

It's going to be interesting this time around with the chemo.  I'm starting to get concerned about how I will handle it.  New baby and chemo... so far they don't seem to go together very well.  Christmas and chemo don't seem like they're going to go together very well either.  I wish I would have started my Christmas shopping a little sooner.  

Anyhow... we're off and running.  Every Monday for 11 more weeks I'll be making my way over to the cancer center for the cancer killing drug... my friend... Taxol.

Chemo Again?

Tomorrow I'm supposed to be starting chemo again.  I'm not sure it's going to happen though.  Friday when I was getting ready to go to bed, I noticed that my new half breast is inflamed and red with an infected area where the plastic surgeon fills the expander.  It was Friday night when I noticed this, so the only option for treatment was to go to the ER.  Fortunately, I got in and out of there in an hour.  I went in at 10:30 pm, explained to the doctor that I'm supposed to be starting chemo on Monday and I just need a prescription for the infection.  The ER doctor was concerned about the infection and wants me to follow up with the plastic surgeon ASAP.  He said that the expander might have to be removed because of the infection.  Seriously... if I had that surgery and went through that pain to just have it removed again... I will be so disappointed.  It would also cause a problem for me with my prosthesis because I already got rid of it.  I gave it to away so it could be donated to a woman without health insurance.

Today I got a call from my oncologist regarding my pre-chemo blood work I had drawn yesterday.  My potassium levels are extremely high.  We're assuming that there was a mistake with the labs because I feel fine and if the lab results are accurate, it would mean that I'm most likely in kidney failure.  So... tomorrow morning I have to get my labs done as soon as the lab opens so that my oncologist can get the results before my 9:30 am appointment.  Even though we're under the assumption that it is a mistake, it still scares the crap out of me.  I can't stand the idea that there might be something else wrong with me.  

Chemo Brain

This morning on the way to my appointment at the cancer center, my husband and I stopped for coffee.  I was driving so John could get some work done.  He stayed in the car while I ran in to Starbucks to get our coffee.  As I stepped out of the car, I realized that the car had started to move again.  Oops... I didn't turn off the ignition or take it out of gear and put it into park.  Fortunately I was quick to react and hopped back in and got my foot on the brake with an inch to spare before my car went bumper to bumper with the car parked in front of me.  How embarrassing!  I looked over at John and said, "Oops... I claim chemo brain!"  I started to think about it.  It could be the chemo brain (which I've heard lasts for up to 5 years after treatment... LAME!) or it could be the new mommy brain.  So many excuses to choose from.  I will go with a combination of both.  My brain does not work well at all... period.

We had rain this morning.  It was my favorite kind of morning as we were driving up the 101 to Santa Barbara with the dark clouds over the ocean and a hot cup of coffee in my hands.  It's in those moments when I'm awed by creation that I love and in those moments I feel extra grateful for this life I have been blessed with.  

My appointment was simple.  They went over the side effects of the chemo... pretty much the same as last time.  It's funny how different this pre-chemo appointment was than the last one.  I'm not afraid anymore.  Before I had chemo before there was so much fear involved.  I am so afraid of the unknown and since I've been through it already, I no longer find anything to be afraid of.  

I'm thinking about dying my hair.  Never in my life have I dyed my hair.  I had highlights a couple of times in my late teens but that's it.  I think that since they said there is a high probability of my hair falling out again, I need to do something entertaining with it while I still have it.  Speaking of hair... Zeek and I were having some tummy time together today and my husband took a picture.  It was of the back of our heads.  Zeek has my cowlick.  I didn't know I had one until now but it's so fun to see that he has a characteristic so distinctly from me.

Here is a picture of me with my half inch of hair and some more of Zeek and me.

Half Inch Hair

Sweet Baby Ezekiel - 3 weeks old

Tummy Time

Zeek and Mommy Cowlicks

New Half Boob

For the past couple weeks I have been in a constant haze.  Whether from my sweet new baby, sleepless night fatigue, or a pain medication fog... these past weeks have just been a blur.  I'm finally starting to feel like I have the smallest capability to think clearly.  There was a point last week where I thought I had completely lost my mind.  I was reading a post on Facebook and I had the strongest urge to comment on the post with this crazy irrational baby talk/Dr. Seuss inspired statement.  I don't remember what it was but I wish that I did so I could be entertained by my moments of insanity.

I'm so eager to get started with my treatment again.  I don't like waiting.  I want to get things going so I can get them over with.  I have a full head of half inch long hair and the longer it grows, the more irritated I'm going to be if it all falls out again... although... I must say that I hate my hair right now!  I'm looking awfully butch (excuse the very not PC term).  I'm feeling so extremely unattractive with my just had a baby body, my butch hair, and my one breast... oh and I definitely need to mention the drain tube I've had protruding from my side for the past two weeks.  I have good news though.  Today the drain was removed.  More good news... I have one and a half boobs.  The plastic surgeon not only removed my drain today but he also started to fill the expander.  It was seriously one of the most gratifying experiences I've had in a long time.  I keep pulling my shirt away from my chest to look down at my new half boob.  It's pretty awesome.  I'm just hoping that it's able to be completely filled before I start my next round of chemo.  I've been without a breast on the right side for so long... I don't want to end up stuck with uneven breasts for the duration of my chemo.  By the way, I was so excited about my new half breast that I thought about posting a picture on the blog but then decided it would be inappropriate. I do need to post a picture of myself with all my half inch hair but I've only had one picture taken recently and I looked like crap with swollen/tired eyes and a look of confusion on my face.  I'm pretty sure I was on a high dose of pain medication at the time.  Thank God that I'm no longer in need of the pain medication.  I didn't like being dependent on it to function.

My little Ezekiel is still the perfect baby.  He eats like a Raymond.  Which means that he eats a lot!  Sometimes it seems like I can actually see him gaining weight on a daily basis.  John and the kids have to ask for a turn to hold him because I'm holding him at almost all times.  I just can't get enough of the little guy.  He is so sweet.  Every time I look at him I think of what a miracle his little life is and I feel so blessed that God entrusted him to me.

Tomorrow I have an appointment to go over the details of my next rounds of chemo.  I'll find out about all of the side effects and I'm guessing that's when I'll get my start date.  It will feel good to get back into the cancer center and get under the watchful eye of my oncologist.  There is a sense of security that being treated provides.  I want the security of knowing that everything possible is being done to make sure that this cancer is gone and stays gone forever.  Give me drugs.  Give me radiation.  Give me whatever will work to give me a long and cancer free life.  

PET Scan

Today I finally had my PET scan.  Monday when I scheduled it I was so nervous.  As the week went on, I got tired... really, really tired.  The past couple of nights, Ezekiel hasn't been sleeping well.  I'm pretty sure it's gas caused by my inability to burp him well when I'm half asleep at night.  I have been so tired that I think I forgot to be worried about the PET scan.  Babies are so wonderful.  I never thought I'd be thankful for sleepless nights but I would take this new mommy fatigue over cancer patient anxiety any day of the week.

I left the house this morning knowing that I would be injected with radioactive chemicals that would be in my system for several hours.  Which means I can't be around my kids until they are out of my system this afternoon.  My three older children kissed me goodbye and my sweet baby boy gave me lots of sweet little smiles. I don't know what the deal is with this little guy...  I have never seen a newborn smile like he does.  He smiles all the time.  I'm kissing his sweet little face and telling him I'm going to miss him today and he's just sitting there smiling away... what a little blessing he is!  

Once at the Cancer Center, I received my injection and waited for an hour for the poison to penetrate my system.  I dozed off several times.  If they had just given me a pillow, I could have had a really nice little nap. They took me to the CT machine, I laid down with arms raised above my head, they sent me into the machine and I battled sleep for the next 45 minutes.  I thought I was going to have a panic attack a couple different times because I was so worried about falling asleep and moving and ruining the test, that every time I started to doze, I would catch myself and my heart would start racing.  I would then have to focus on my breathing... in through the nose... out through the mouth...  Finally the test was over and they technician came in and told me they were going to run the scans by the doctor to see if they needed anything else from a different machine.  I was having such a hard time not assuming the worst... that they had seen something and needed more images.  The technician came back and said the images they had were enough and he sent me on my way.  

Within twenty minutes of walking out of the Cancer Center, I got a call from my oncologist.  My phone was still on silent, so I missed the call.  I checked my voicemail and the message said, "The results from your PET scan are GREAT!"  I heard this and immediately started crying tears of relief.  I called them back to make sure I heard correctly.  Yes!  The scan was negative!!!  I cried again.  

I have an appointment with my oncologist on Monday.  We will go over the remaining treatment.  12 weeks of chemo and 6 weeks of radiation to kill any possible cancer cells that could be still floating around.  I am no longer a cancer patient.  That may not be the way the medical field views me... but it's how I view myself.  I don't have cancer.  It's gone from my body.  Those cells that could be floating around...  they'll be gone soon too!

PET Scan Scheduled

I called my oncologist's office this morning to find out the status of the PET scan they said they were going to get scheduled this week.  Apparently they hadn't done it... which doesn't make me feel very confident.  They faxed the orders over Nuclear Medicine and I called to schedule the scan.  This Friday at 7:30am.  The only instructions are no carbs or sugar for the 24 hours before the test and fasting for 6 hours before.  As soon as I got off the phone from scheduling the appointment I was overcome by fear.  I am terrified.  How strange to have nothing change except for a test being scheduled...but it can make such a huge difference with my emotions.  I told my husband that I'm afraid and he told me that he is too.  This afternoon my sister Julie asked me what comes next and I told her I have the PET scan scheduled for this Friday.  She asked me if I'm afraid.  I said yes and she said that she is too.  The fact that other people are afraid for me makes me even more afraid.  I guess this week I will be learning patience.  The waiting is the true challenge for me.  I am still choosing to believe that I have no cancer in my body.  I am claiming it right now and I am going to take control of my feelings and choose to not allow this fear to have any power over me.  I trust God with my life... whatever may come.

Expander Surgery #2

Yesterday I had my surgery.  My sweet baby boy is one week old and I spent 8 hours away from him.  It was horrible.  The anxiety of being away from him was worse than the pain from the surgery... although I've had heavy doses of narcotics to help with the pain and there isn't any drug in the world that could make me feel better about being away from my little guy.

The surgeon was running over an hour late.  I was in pre-op, prepped and all ready to go before the surgeon even got there for the surgery scheduled before mine.  That was really frustrating because I was sitting there bored stiff doing the math in my head on when I'd be able to go home.  They took me in to surgery about an hour and 15 minutes late.  I woke up from surgery asking how long I'd been in recovery and how quickly they could move me to post-op.  I seriously felt frantic to get out of there.  Everything moved pretty quickly.  They sent me to post-op and I asked what I needed to do to get out of there and they said I needed to drink something and keep it down and use the restroom.  I chugged a bottle of water and went to the bathroom got dressed and was out of there. I was instructed not to lift anything over 10 lbs.  Perfect!  Zeek only weighs 8 lbs.   

Sometimes I start to get really irritated that the only reason I needed to have this surgery is because the first plastic surgeon screwed up.  My new plastic surgeon (Dr. Pickart, who I highly recommend) makes it very evident how negligent my first plastic surgeon was.  My new expander was only about 1/6 filled.  He will slowly fill it over the next few weeks.  I go in for a follow up appointment this Friday and hopefully will get the drain removed.  I was so disappointed when I found out I needed to have a drain again.  Drains are so disgusting and inconvenient.  

I've been taking my pain meds every four hours (as prescribed) which is excessive but I'm taking them because I want to hold my boy and this morning I wanted to go to Ephraim's soccer game and I want to be able to sleep.  So far the pain from this surgery seems to be just a fraction of what the pain was after the mastectomy.  Thank God!

Ezekiel is a perfect, happy and expressive baby.  He smiles all the time in his sleep.  The entire family adores him.

Ezekiel - One week old

All 5 Raymond kids - Ephraim, Sebastian, Tobias, Ezekiel, and Daphne

Ezekiel - One week old - smiling for Grandpa while mommy was having surgery