Chemo Treatment #2

I have been so busy since my last treatment preparing for Hudson’s first birthday that I was too exhausted to write until now.

Before my treatment, I had to meet with my doctor.  She told me my white blood count was quite low (only 2.5) but that they would treat me anyway because they were going to begin giving me Neulasta shots.  I had heard bad things about these shots from a few friends who needed them so I was not too happy about it.  Neulasta is given 24 hours after chemo to help your body produce more white blood cells than it can naturally.  It is administered in the back of your arm just under the skin like a flu shot.  It only burns for a second because it is so cold.  There is only one major side effect, intense bone pain!  Thankfully, taking Claritin helps keep away the pain.  Doctors are still not really sure why it works, but they tell all patients to take it anyway.  It seemed to help me so I will surely take another over-the-counter drug to avoid pain.  What’s another pill added to my cocktail really going to do to me at this point?  Frank and I counted and there was a day that I actually had over 20 drugs in my system at one time! 

Getting Neulasta makes this process a little more of a headache.  Since the shot must be given 24 hours after treatment, I need someone to drive me to get it.  I usually feel foggy and easily get carsick the day after.  It also needs to be administered by the nurses at my hospital (which is an hour away) to be covered by insurance.  I found this out after spending many hours on the phone with my case manager at my insurance company.  She tried hard to get the shots to my primary doctor so that I could get them only a few minutes from my house.  The process was all figured out until I got another call saying I would owe over $4000 for just 3 shots (that is with insurance, without it would be over $20,000!), because I was asking my prescription plan to ship them to someone else or some ridiculous reason similar to that.  I will need about 12 of these shots, so if you do the math, that is over $16,000 that I would owe.  YEA RIGHT!  Who has that kind of money just sitting around?  So we found a solution that is half as good.  There is a sister hospital I can go to and they can give me the shot and it will be covered by my insurance.  So, I only have to drive a half hour and the shot will cost nothing.  I think that is a pretty good answer to the problem.   

UPDATE: I heard from the doctor's office today and my white blood count is 5.  That is right in the normal range.  The Neulasta shot worked!  The plan to get the shot 1/2 hour closer to home will not work this time.  There will not be a doctor available in the afternoon to administer the shot, boo.  That means I need to head down to Methodist, an hour away, just for one silly shot.  Totally annoying, but worth it if I feel better and my side effects are shorter lived.   

During the treatment (March 28) the worst part this time was the disgusting metallic taste in my mouth while they administered the Adriamycin.  The medicine can cause mouth sores, so patients suck on ice to cut down on that possibility.  The only problem was the ice tasted like frozen metal.  GROSS!  I tried to get creative and mask the taste by sucking on Jolly Ranchers while sucking on the ice too.  That sort of worked, but I ended up getting three little sores a week later, so it was not the best option.  Next time I am taking Rita’s with me and eating it throughout the duration of the drug.  That way I get a different taste and coldness in my mouth all at the same time.  I may end up hating that flavor of water ice for the rest of my life due my brain linking smell and taste to memories, good or bad, but oh well.  There are worse things that could happen.

          My treatment was shorter this time as well.  Instead of getting home after 5:00pm we were back home around 3:30pm.  That was partly due to the fact that I had my blood work done two days before treatment at a local Quest.  That meant my doctor already had the results in her computer and was able to order all my drugs from the pharmacy before I even showed up!  That cut out at least an hour of lag time.  I also did not need as much wait time between drugs because I did not have reactions to them so they could administer them closer together.  Plus, no lessons, because I am now a “pro.”

          The side effects were not nearly as bad this time either.  I felt relatively normal Thursday night into Friday night.  I did take Xanax to help me sleep which was a good choice.  Last time the steroids woke me up so much I was over-tired and weak.  This time I got at least 8 hours each night.  I did not have the sweats from the steroids either.  I did however have several days of heart palpitations.  YUCK!  I hate that feeling.  I had to take Xanax a few times during the day as well to calm me down.  I may have been a little stressed about Hudson’s party too. 

          Saturday night was the worst.  Around dinner time I felt the body aches starting like last time only this time they were MUCH worse.  The pain always starts right at the hairline on the back of my neck and slowly works its way down my body until it hits my knees.  I was in so much pain I could not get comfortable.  I couldn’t lay or sit.  I took Xanax to calm myself down because crying wasn’t going to help anything.  Once I fell asleep I woke up every half-hour to hour wincing in pain because I probably moved a little in my sleep.  By 6am I was so over lying in bed, that I gave up.  I ripped all my clothes off as in a fit of rage and stood in the shower for nearly 40 minutes!  It was the only relief I had felt since 5pm the night before.  By breakfast time the pain was tolerable and by dinner time Sunday night it was gone.  But those overnight hours were shitty!  Thank goodness it was only one night.  I could not spend a whole weekend like that.  I am praying it does not get worse next time.

          I did not get as weak this time around either.  I am hopeful that is due to the Neulasta shot but we will not know until they test my blood again next week.  Overall I bounced back much quicker this time.  I am getting stronger and have actually held and carried Hudson around a few times over the past week!  I was able to enjoy his birthday party and all our family and friends who came to celebrate with us.  With each passing day I get closer to feeling more like myself again.  That is encouraging to me.  It makes me feel like all of this crap is going to be worth it. 

The warmer weather also helps to lift my spirits.  I cannot wait to buy some pansies at Produce Junction and fill my pots.  This is the first spring in our new house and I am really looking forward to enjoying our new yard and neighborhood as a family.  Frank and I got Hudson a Radio Flyer wagon as his birthday present.  He went for his first ride Sunday after dinner.  He loved it.  We walked around the block last night and met one of our neighbors.  I am ready to move past this cancer and begin our new life.  I want to set down solid roots, meet new people and build new relationships.  I want Huddy to find friends near us and set up play dates.  I am moving on with my life so this cancer needs to get OUTTA HERE!

         

Radiation, FINALLY!!!

For some reason I have had the hardest time getting motivated to write this entry.  I worked most of the week and was exhausted by the time I got home.  I also had a sick baby on my hands who spiked a fever early Friday and required me to leave work unexpectedly.  Parenthood!  Anyway...

I finally had my radiation treatment on Friday, March 15.  That was after one cancellation and two postponements. The machine I was supposed to have my treatment with was still out of commission so I was treated at a different facility at Jefferson.  Annoying!  The machine they had available was older and the treatment lasted longer than I expected.

My treatment was scheduled for 2pm.  Frank and I took advantage of the late appointment and went out to lunch beforehand.  Once again I was craving meat and was devastated to find out the sausage, tortellini meal I love was no longer on the menu.  What a let down!  I conceded and had sausage soup.  Also very delicious and helped satisfy my body's need for protein.

We got to the radiation center early and of course they were running behind.  Eventually my doctor came to get me and took me into an exam room to explain the process.  I was given one steroid pill, to help fight against a tumor flair and one, half-strength anti-nausea pill just in case.  (I hate taking that medicine because it is the cause of all my bowel issues.  When I mentioned my lack of bathroom trips to my nurse, and all the different over-the-counter drugs I had tried he responded by saying, "Yea, some people need dynamite "  Frank and I laughed out loud with that comment.  It was so true.  I finally drank some more liquid dynamite and the problem is somewhat under control.  Until the next round of chemo probably.)

When they took back I was surprised at how unimpressive the room was.  I expected it to look a lot more updated and full of highly advanced equipment.  The radiation machine was there with a table and tons of cabinets and an old desktop computer.  Some cameras on the ceiling and some other stuff that was disabled a long time ago.  The nurses helped me climb onto the carbon table and lay down into my "body mold" mattress thingy.  I stayed fully clothed the entire time, they just pulled shirt up so my stomach and back were exposed.

Before they could begin they had to take a mini CT scan to make sure they had everything lined up properly.  It would not be a good idea to just blindly start shooting a radioactive beam into the center of my body!  Once they were happy with everything, they started the radiation.  The machine rotated around the table six times.  It took about 20 minutes.  Afterwards they took another CT scan to check if I had moved (more on that in a minute) and then completed the treatment with six more rotations.  All together I had to lay still for an hour and 20 minutes.  The CD they put on for me to listen to had run out and I ended up just staring at the ceiling, grinding my teeth to the rhythm of the machine (which seems to happen often, based on the pain in some of my molars) using every ounce of my being not to FREAK out about the pain and tightness in EVERY muscle of my body. It is amazing how a person's will can help them stay calm in a stressful situation.    I was really uncomfortable by the end of the treatment but I knew I had to stay still because it would make for a better round of treatment.  All I wanted was to make sure this cancer was being killed, so I held it together.

Throughout the entire process I had to hold completely still.  When the treatment was over my nurses and doctor came in to help me off the table.  My shoulders and arms were so stiff and sore because they were above my head the entire time.  Both my legs had fallen asleep and they were throbbing.  My doctor told me I get the award for the least amount of movement during a treatment.  I had moved a little less than 1mm.  That is such a small amount that they did not have to readjust anything.  GO ME!  Then she chimed in with a laugh and said, "And I forgot to offer you a muscle relaxer!  Sorry about that but great work!"  I fake laughed at that due to my intense pain.  That probably would have helped.

After the treatment we went back to the exam room to discuss possible side effects (which all I had was some sleepiness) and scheduled a follow up appointment for five weeks later.  Then we were on our merry way.

The ride home was HORRIBLE!  We had to take 611 again because we were leaving at rush hour and couldn't take the main highway due to traffic.  That makes a typical 45 minute drive about an hour and a half.  Half way home I began to FREAK out.  My legs were throbbing, I was screaming, sweating and tugging at my clothes.  Every red light made it worse.  I was having a major panic attack brought on by the steroids.  All I wanted was a hot bath to help stop my leg pain.  When we got home I burst into tears (again from the drugs), ran upstairs and hopped into the bath.  Unfortunately my legs ached all night which made it difficult to sleep.  Thankfully when I woke up they felt much better as did my back.

The bone in my back is less sensitive to touch and I can lean against most chairs again.  I also have some more range of motion.  All signs that something is working to kill this cancer!  As painless and "easy" as this treatment was I am very glad I only had to go once. It is amazing what science and technology can do for us now.

Treatment Aftermath #1

WARNING: Do not read on if you do not care to know the details of my side effects.  Some people may like to stay naive when it comes to that and I completely understand.  I would rather not get weird glances from people because they read this entry!

I ended up taking more time than expected to recuperate after chemo.  Chemo was on Thursday.  I took off Friday, had the weekend and then stayed home Monday as well. This treatment was not as bad as I anticipated, which is why I always prepare for the worst.  That way, when things are not as bad, I am quite relieved.

Thursday evening after treatment: During the drive home I was like a crazy woman, pumped up for the steroids.  Every mention of food, or fast food joint along the drive triggered my stomach and I continuously yelled out about all the foods I was craving!  As it was, I ate 2 packs of fruit snacks, a small bag of pretzels and licked some cottage cheese (ew I gagged just writing that word) out of a container during the hour drive home.  When we got home my mother-in-law had dinner ready for us.  I ate two grilled cheese & ham sandwiches and drank a bunch of raspberry lemonade.  The lemonade ended up being a big mistake.  I had the worst heartburn of my life.  I was burping fire for a while until the acid medicine kicked in.  The rest of the night I felt semi-normal until bed time.  I fell asleep fine, but was WIDE awake from 1:30 - 3:30.  At this time I had some pains in my stomach.  I took the time to chat online with a fellow cancer patient who was up for the same reason.  I also woke up again around 5am.  Since I did not sleep well, I decided not to go to work.  Later I realized that was a good choice.

Friday:  I felt like I had crazy energy most of the day but in between the bouts of energy I had hot flashes and a racing heart.  A friend brought over lunch, 3 chicken & cheese tacos.  I housed them.  I am supposed to eat a lot of protein and dairy so that was a good lunch.  By the late afternoon I was coming down from the steroids.  I did not like that feeling.  I had a very long hot flash and my heart raced for over an hour.  I called the doctor and they assured me it was most likely from the steroids and to call them back if it did not stop within an hour.  Thankfully it did stop.  They advised me to take a Benadryl next time to counter-act the side effects.  I am thinking that is a good idea.  I did not like how I felt.

Saturday:  During the morning I felt ok but was very tired.  I did have to take Zofran throughout the day to fight off nausea and dizziness.  By Saturday evening my skin started to hurt.  I did NOT like that feeling.  Imagine having a high fever and your body hurts.  That is how my skin felt, minus the fever.  It hurt to rub against my pillow or brush my hair out of my face.  I slept pretty well that night and when I woke up my skin was not as sore.  I am hoping I will always be able to sleep through that because it was gross.  If I have to I will take a Xanax.  Anything to avoid feeling poopy!

Sunday: VERY TIRED and somewhat weak.  Little bit of nausea too.  Also very constipated, YUCK!  Patients can get diarrhea or constipation.  Neither option is much fun.  I had a horrible stomachache.  I began taking Senocot, which is similar to Ducolax, but nothing happened.  I take 2 fiber gummies each day too.  Nothing.  So, I had to get this disgustingly sour Mag Citrate.  Do not believe advertisements.  It is nothing like Sprite.  It tastes like liquid lemon.  I could not handle it.  I nearly puked.  Hudson thought my gaggy face was funny.  At least someone enjoyed the drink, ha!  This lovely drink is supposed to start working within an hour.  WRONG.  I never went to the bathroom until Tuesday afternoon.  Oh the joys of drug side effects.

Monday:  Feeling better, but still tired.  I felt pretty normal again except I did not have much energy.  I spent most of the day in bed watching cheesy Lifetime movies (guilty pleasure) and checking the Internet.  I really wanted beef jerky throughout the day but had to energy to drive myself to the store, so I gave up on that craving.  My dad and Claudia brought pulled pork for dinner.  That helped satisfy my meaty craving.

Tuesday:  Back to work.  I had to leave at 2pm.  The muscles in my back were aching and exhausted.  I came home and threw myself into bed.  I am pretty sure I was asleep in less than a minute.

Today (Wednesday): I stayed home until lunch time today.  I took a Motrin to take the edge off the muscle aches.  Since I was well rested the afternoon was much more productive and enjoyable.  My appetite is pretty much back to normal too.  I had a smoothie for the first time since my treatment.  YUM!

I am amazed by the amount of drugs one can take while on chemo.  The philosophy is to treat the side effects so that each patient feels the best they possibly can after infusions.  That being said my counter is littered with over-the-counter drugs.  Zantac, Gaviscon (liquid & chewables) to help with heartburn and sour stomach, Zofran for nausea, eye drops to deal with dry-eye, Motrin for back pain, Benadryl to fight off allergy reactions, Xanax as needed for anxiety and I am sure I missed something.

The other crazy part is the food cravings and aversions.  It is like being pregnant, but for me, far worse.  The morning after my treatment I went to prepare Hudson's lunch and could not even open the cottage cheese.  I had to yell for Frank to scoop it into a container while I was in the other room.  It had to be returned to the fridge before I could finish packing for him.

I have been craving meat non-stop.  I am not a huge meat-eater, but my body needs the protein to heal after infusions.  That explains my major need for beef jerky and chicken taquitos at 1030am!

I am already starting to feel better.  My back is less sore and I have more range of motion.  I am tossing and turning in bed again.  I have been unable to move in bed for MONTHS.  I asked my nurse if I truly was feeling a response to the medicine or if it was a placebo effect.  She said the one medicine I am getting is very strong and that it is very possible that it is already killing some cancer cells!!!!!

I FINALLY get radiation on Friday, March 15 in the late afternoon.  I cannot wait.  That will help my back heal even further.  Then I can begin strengthening my muscles and getting back into shape.

First Day of Chemo

We all got dressed in our pink gear, took a bunch of pictures to post online, dropped Hudson off at daycare and then began the drive to the infusion center.  Surprisingly I was calm.  No major doctor shits, no shaking hands, no racing heart, nothing.  Just some normal back pain which was dulled due to the lovely distraction of reading all the pink Facebook posts from everyone!

We arrived a few minutes after 9am (the fastest drive so far), checked into the oncologist's office, walked down the hall and checked in at the infusion center.  Then waited about 15 minutes for my blood work (of course I was in the bathroom when they called my name!). They took my vital signs and then we waited another 10 minutes for the nurse to come over to access my port and draw my blood.

The port access was much easier than I expected. The port is located in a vein that leads directly to your heart, so it has to be a very sterile process   The nurse wears a mask so that she doesn't accidentally breath onto your port.  I had to turn my head away and she cleaned the entire area with stinky alcohol, which made my nostrils burn and eyes water.  Once the area was clean it was time to stick in the needle.  During the drive down today, I applied the Lidocaine cream all over the area to numb the skin.  Man did that work well.  I did not feel ANYTHING!  Thank you very much Lidocaine, you finally came through for me.  After failing me during so many procedures you actually did your job, you numbed me.

After the labs were drawn we went back down the hall to the oncologist's office.  We were put in a room right away and waited about 5 minutes for the doctor.  She listened to my heart and felt my lymph nodes and answered some of my questions.

Then, we went back down the hall again to infusion (good thing I am able to walk without too much of a problem).  They gave us booth 10.  It is equipped with a recliner for me, chairs for my family, a TV, small built-in desk, roller table to eat from or type on and an IV pole.  The walls go half way up for some privacy but the front is open to the rest of the room.

We waited for about a 1/2 hour before my nurse, Helen, came to explain everything to me.  Then she hooked me up to my first drug, Emend.  That is the anti-nausea drug.  It will last for 2-3 days and should help me stay on top of the side effect so I will not feel sick.  They gave me another anti-nausea drug and a dose of steroids.  My back has not felt this good in months.  We think the drugs possibly took down the swelling therefore helps to ease the pain.  Apparently these drugs give people so much energy that the day after treatment they are scrubbing their entire house or out running every possible errand.  I will keep you posted on how they make me feel.

It is 1:06pm and we are once again waiting.  This time we are waiting for the nurse to come and administer the Adriamycin.  This is the red chemo drug.  Not only does it cause your hair to fall out, but my pee can also turn red!  Only for a day or two, but it is pretty funny.  Before they can actually give you the drugs, 2 nurses need to check your ID bracelet information against the information on the chemo medicine.  I am glad they do that because I would be EXTREMELY pissed if they gave me someone else's drugs.

Adriamycin was pushed through in about 20 minutes.  We talked to the nutritionist the entire time and it was done before we knew it.  I had to chew on ice the entire time to help prevent mouth sores from forming.  Helen said if I were to have a serious reaction to the drug it would have happened in the first 10 minutes.  Nothing happened, so that is a good sign.  I went to the bathroom afterwards and my pee was a bright shade of red-orange.  Good thing they warned me about that.  I could see how that would be an alarming surprise.

It is 2:27pm and I am getting my final drug, Cytoxan.  This is through a IV drop and takes about 30 minutes. The weirdest thing that could happen today is lots of sneezing or watery eyes because it can irritate your sinuses.  So far, no sneezing!  Dealt with a slightly odd, hard to identify smell, but it's wasn't too overwhelming.  A little tightening of the sinuses but that has already calmed down a bunch.

It is 3:47pm and my port is out.  They flushed my port with some saline (yucky taste) and Heperin to prevent a blood clot and then covered with a bandaid.  I could not feel a thing.  Maybe that nurse was right.  Maybe I will love my port.

I am leaving today with a plethora of knowledge, tons of pamphlets and lifted spirits.  This process was easier than I thought.  I know I still have the side effects to worry about, but the hardest part is done.  The first trip down here is finished.

I can check one treatment off my to-do list.

 Here I am in my cubicle, typing away to keep everyone updated.

*PS. I have been checking Facebook, email and texts all day.  The pink pictures REALLY kept us (me, Frank and mom) going.  We are so moved by the amount of people who are sending their love and support.  THANK YOU!

For those of you wondering, it is now 7:04pm.  I just went to the bathroom and my pee is back to its natural color.  Oh, and because mother-nature doesn't care if a person is getting chemo...I got my monthly visitor!  (Sorry guys, told you this blog might make you cringe, ha).

On another note: Hudson is now walking around the coffee table and removing his hands to balance himself.  This chemo and soon-to-come radiation better heal me quickly.  I have a baby to chase around.

Chemo Prep

I have been scouring the internet to find advice about what to take to chemo treatments.  I have found some very helpful entries and I have compiled my own list of "necessities" based on this information.

My husband often tells me I pack too much.  "No one needs this huge suitcase for a weekend trip to the shore. You do not need 45 diapers for one night. We are just going to my parents. What is all this stuff?" (I am taking some creative license here, but he has said similar things many times).  Anyway, I was a Girl Scout from first grade through senior year of high school and if I learned anything it was, "always be prepared!"  I would rather have too many options than not enough.  That being said, I plan to fill the car with anything I may possibly need and send my mom and husband out to grab what I need (sorry guys).  

Pillow & Blanket - I know they will have some there, but they will be all hospital-ly.  I have too many bad memories of hospitals over the last few years, so I need my own, comfortable, soft pillow and blanket with me.  Everything I have read mentioned the chemo room may be cold or the drugs may make you feel cold.

Mints & Jolly Ranchers- To suck on in case the medicine gives me a metallic taste.

Snacks - I have a very hard time deciding what to take because everyone warned me that whatever foods a person eats during chemo are later associated with it and the person does not like them anymore.  How do I choose foods to eat now knowing I will probably never want them again?  I tried to choose foods that I feel "take it or leave it" about:
- granola bars
- raisins
- applesauce
- Fig Newtons
- cottage cheese
- peanut butter crackers
- Chex Mix
- Fruit snacks
- Goldfish crackers

Hydration - I will have my 24oz insulated, breast cancer cup and a Glacier Freeze Gatorade with me.  It is important to flush your system during and after chemo to move the toxins out of your body as quickly as possible.

Laptop & Samsung Galaxy Tablet - Yes, both are needed.  I want to blog while I am there and I cannot do it on my tablet because I need an actual keyboard.  I also have games on my tablet, like Draw Something, that I cannot play on my laptop.  I have Netflix and can watch movies while I am there, but would prefer to do that on the laptop because the screen is larger.  I also want to work on my photo book for Hudson and I cannot do that on my tablet.  I will use BOTH to go on Facebook throughout the day to see all of the PINK support posted.

Other Entertainment - I may take magazines, books and some crochet projects that were started a few years ago and forgotten.  I do have an afghan that is more than half finished.  Maybe it will be done by the summer and I can use it in my bedroom.  The colors will go perfectly with our freshly painted walls (thanks dad & Claudia).

Cute, Comfy Outfit - I went to Target and got a workout outfit that is both cute and comfortable.  I wanted to promote the pink while I was there so I made sure to get a pink shirt and jacket with a pink zipper.  The neon argyle socks are my favorite part (Fun fact: I have over 100 pairs of fun-printed socks.  Some I have had since 8th grade when I made a bet with a kid that I would never wear solid white socks again.  I think I have kept to that for all but maybe 2-3 days over the past 15 years, honestly!).  I will even be wearing pink undies!  I chose a looser, v-neck shirt so that the nurses have easy access to my port.  It is located on my left side a few inches below my collar bone.

My mom's friend from high school sent me a cute neon pink tank and zip-up hoodie sweatshirt.  It was so thoughtful of her.  Now I have 2 pink options for my treatments!

A Quick Update

I realized I never gave an update following the post after my radiation was canceled on Friday.  Unfortunately the x-ray machine needed to direct the gamma ray within 1mm of the tumor needed a new part.  That part was coming from England so no radiation again today :(.  I did find out yesterday so I was able to make today worth my while.

I went to the dentist because my 6 month check-up was supposed to be March 30 and that would be right in the midst of chemo.  Plus, the information packet from the hospital suggested patients go to the dentist before starting chemo.  I am cavity free.  Thank goodness because I'm pretty sure if I needed a filling I would fall off the deep end.

At this point, chemo is DEFINITELY happening this Thursday, March 7.  As for radiation, I am scheduled for March 15.  That way I will have a week to recuperate after chemo.

I am happy something is moving forward, but disappointed radiation was not first.  I am dreaming of pain relief and chemo will not offer that until months into treatment.  So, the aftermath of this treatment will most likely be worse than others because I will still be suffering from the back pain.  Fingers crossed that things are not as bad as I foresee them in my head.  

Bump in the Road

So, Frank and I were half way to Jefferson Hospital this morning when my phone rang.  It was a nurse calling to CANCEL my radiation because the machine is broken.  I cannot believe this.  I was so upset and confused.  Apparently the engineers at Jeff are not able to fix the problem so the manufacturer needs to come.  They swear I can have radiation on Monday because the company is able to expedite parts and fix machines on the weekends.  I hope so, because I NEED this treatment.  I am so stressed thinking about the fact that the cancer cells are multiplying with each passing day.

I will know by this afternoon if they can fit me in on Monday.  As of right now, my oncologist said we can stay on schedule with the start of my chemo.  Stay tuned for updates throughout the day as I get them.

UPDATE: The machine's part will not be in until Monday morning.  So....I will be getting radiation on TUESDAY, March 5 at 11:30. Here's hoping this actually happens.  I was so mentally prepared for it today.

I am taking today as a chance to catch up on things.  I am uploading pictures onto Shutterfly so that I can work on Hudson's first year of life yearbook.  I am also going to work on his baby book.  There are so many post-its stuck in there.  I need to write the information on the pages.  I threw some laundry in too (but Frank will help with most of that).  I am also going to take advantage of this weekend and hopefully see some friends/family.  I had planned to rest and heal from the treatment, but instead, I will use this three-day weekend as a mini-staycation:)

A Request

Hello family, friends and people who randomly stumbled upon this blog.

So many people have asked me what they can do for me and to please let them know what I need.  Well, I thought of something that everyone can do to really make a statement.

I am asking everyone to wear PINK on Thursday, March 7 (my first day of chemo).  Then, email, text or Facebook pictures of yourself to me (my mom, my husband) in all your pink glory.  As I receive them throughout my treatment I will be reminded of all the people out there who support me.  We need to make a statement to let people know that more and more women under the age of 40, even 30 are being diagnosed with breast cancer. Together we can spread the word that breast cancer is not JUST an older woman's disease!

UPDATE:
If you are on Facebook you can post your pictures here:
http://www.facebook.com/groups/541817829174840/permalink/541841662505790/?notif_t=like 

You may have to copy and paste the link into your browser.  Or, you can search Facebook for the group, Wear Pink MARCH 7, 2013.

If you are not on Facebook, please email your pictures to ladybug1919@hotmail.com.  With your permission, I may post some of the pictures here on my blog.  

Some of you have my mom's or my cell phone number.  Feel free to text the pictures. Sorry, but I will not be posting my number here on my blog.


Thanks again for everything!

The Time Has Come...

Well the countdown to start my treatment starts now.  I will be getting radiation to my back TOMORROW at 11:30am.  The entire procedure will be less than an hour.  Crossing my fingers that I really do get quick relief.

Chemo starts THURSDAY, MARCH 7.  That is only one week from today!!!!  I am terrified, nervous, anxious, hopeful, angry, sad, and a little relieved.  I know this will be tough, but all of the crap I need to go through will help get rid of this cancer causing all my pain and stress.

I am ready to take Hudson for walks again.  I miss pushing his stroller.  Hell, I miss being able to walk down the hallway at school without wincing in pain or rubbing my back.  Slowly, I will regain control of MY body and get back to the person I was.  Actually I think I will be a better me.  Stronger, happier, prouder and impressed that I fought this cancer and kicked its ass!  So often throughout this process I was convinced I would not be able to handle things.  The biopsies, the appointments full of medical jargon, the needles, the scans, waiting for results, and the surgeries.  My mastectomy was so much more painful than I ever thought possible.  Thankfully I am years past that, so in comparison, getting pumped full of toxic drugs that just make me feel sick should be a piece of cake.  The hardest part for me will be dealing with the hair loss.  I will write more about that soon.

Baby Proofing Myself

So last night Hudson was using my implant as a means to support himself while he tried to stand up on the couch.  Thank goodness I cannot feel anything in that area because I am sure my skin probably did not enjoy the positions it was being stretched.  Later that night I had to make sure I was not lop-sided, haha.

The other day Hudson threw his head in frustration and landed his forehead directly on my port.  It was such an unexpected, immediate shooting pain that all I could do was nearly launch him off me.  I yelled for Frank to pick him up before I lost it.

Both of these episodes made me realize that my post-mastectomy & chemo-prepared body is not designed for the sporadic movements of a baby.  From now on I need to baby proof myself before holding Hud.  So far that only consists of laying the couch pillow on my chest for protection.  Doesn't make for great interactions with my little man.

I will have to keep experimenting until I figure out the best protection.  My implant is going to be with me forever and my port is here to stay for at least a year. I want to be able to play with my little man as soon as my back is feeling better.

Numbers

I have always been motivated, aware of and affected by numbers.  I still know most of my friend's childhood home phone numbers and addresses.  I know all my friends birthdays and anniversaries. I have to set the volume on the TV on an even number, ha.  When I work out I set mini goals for myself based on the calories burned or minutes exercised.  I love playing timed games so that I can beat my previous scores. I love to-do lists and countdowns.  I am so motivated by the ability to physically cross something off.

That being said, numbers are going to surround me throughout this cancer journey.  Dates of treatments, number of treatments, white blood count, blood pressure, pulse, my weight (losing or gaining), number of medicines, length of time for each treatment, co-pays, 3rd floor, number of deduction days taken from work and so on.

Later this week I will find out the number of radiation treatments I will need.  Anywhere from 1-3 so they can make sure to avoid my spinal cord.  The good news, I may feel some immediate relief and within 2-3 days I should be substantially better.

Chemotherapy and other infusions will last for ONE year.  The tentative starting date is March 7.  (As long as my insurance gets the approval back to them on time, I will be good to go.) 

I will be given 4 different drugs through my port in 3 phases. 

Phase 1: 2 drugs, every 3 weeks for 4 treatments - the drugs are Adriamycin (this is red and will make my urine red!) & Cytoxan - these are the 2 drugs that will make me the sickest and make my hair fall out. These infusions will take between 3-4 hours.  They are given 3 weeks apart so the patients' bodies have more time to recover and their white blood cells can get back up. I was prepared for 6 weeks of these medicines so already the countdown has begun.  Only 4 really crappy weekends are in the near future.  8 or so days of fatigue, nausea and whatever else happens. 

Phase 2: 2 drugs, every week for 12 weeks - Taxotere & Herceptin - Herceptin is the drug that will attack the HER2 protein that is part of this cancer.  Taxotere can cause hair thinning and may slow down the regrowth process, but will not stop it completely.  My doctor said the sick factor of this phase is "medium."  So, I will not feel nearly as bad as the first 4 treatments, but I will still feel sick.

Phase 3: 1 drug, every 3 weeks for 8 months - Herceptin - a continuation of the drug started in phase 2.  Infusion will take about 90 minutes.  This drug has little to no side effects.  However, there is a slight chance of heart issues so every 3 months I will get another Echo Cardigram (heart ultrasound).  "Good news" I can get these infusions on the weekends at a different location so I will not have to miss work!

Realistic Side Effects from the drugs:

• hair loss - this is the hardest part, such a physical sign of cancer
• nausea - but there are drugs to help with that
• low blood counts - there are also meds to help that if needed
• numbness/tingling in hands & feet - temporary
• fingernail changes - black lines that will grow out once treatment is finished
• loss of menstrual cycle - really not a problem for me

Other information I learned today:

• I will be able to get a wig, free of charge!
• No buffets or salad bars due to high amount of germs.

As I go through the weeks, months, and the following year I will be counting down.  Counting down the treatments until I get to the end.  When I am finished, I will be counting AHEAD.  Counting each birthday, holiday, wedding, party, school year etc since finishing.  Counting each and every day & year that I will be cancer FREE!

I will have free Wi-Fi during chemo so I will try to blog when I am there.  At least the first time.  If I can steady my hands enough to type.

Long day!

So, today was my radiation fitting.  So much to say, not sure I have the energy to write it all at the moment.

I made my appointment for 11am to avoid the morning rush hour traffic.  Well, the construction on 95 backs up for hours so we had to take a different way.  After, Maggie (our Magellan GPS ) led my mom and I through the ghetto of Philadelphia, we safely arrived at our destination.  Sort of.  After all my visits to Jefferson I still have no clue how to get around all those one-way streets.  It is so overwhelming, that my mom and I always default to the Walnut St. Theater parking lot because we can get there and know how to get home.  We are willing to pay more for our sanity! 

We parked and made it 10 minutes early.  Plenty of time to fill out the 4 forms they had for me.  I feel like I am being tested.  List all the medications you are currently taking.  The dosage, the route (this one caught be off guard), and the frequency.  List all allergies.  Wait...didn't I JUST fill all of these papers out on Monday before having my port put in?  And the day I had my PET scan etc?  I am baffled that a place as advanced as Jefferson needs its patients to continuously fill out the same information.  If nothing has changed then look me up in the damn computer system, have me sign off on it and get on with it!  Sorry, had to vent about that.  I had writer's cramp and all I could think about was how badly I needed to use the locked bathroom.  So strange, they must have been trying to keep the riff-raff from using the public restroom in the basement, so everyone must get the key with the 12 inch long wooden dowel attached just to open the door. 

My 11am appointment did not begin until after 11:30 because the consent form I filled out a few weeks ago (so that the process would be speedier today) was the wrong form.  So, we had to wait for the doctor to come over and sign a new one.  Not before she stopped into the locked bathroom and tripped over her own feet when entering the room, oops! 

First task of the day, making my body mold.  This is what they will use to hold me in place during the actual radiation treatment.  I laid down on a blue, air mattress/beanbag cushion on a table in the middle of the room.  Due to the location of my tumor I had to lay my arms above my head so that they will not be in the way of the laser beam.  It took 3 people to mold this thing.  They can add and remove air with a little machine and when they are happy with things they completely deflate it.  All the little balls get really tight together and create a mold around my body.  When I got up all I could think of was those plastic sleds you use when you are little.

Next task, MRI.  This was TERRIBLE!  I have had several MRIs at this point, but for some reason this one really got to me.  Maybe because I was told the entire day would only be an hour and a half and then I found out that was how long the MRI would take!  My MRI tech, Phil, was very lucky I now take Celexa because I would have had to "shoot" the MRI messenger after all of it.  First, the information about my chest port never made it to them even though I called over with it more than 24 hours prior (like I was supposed to).  They needed to copy the information, then Phil had to talk to his boss because once you have a port you can only be scanned in certain machines.  That took about 20 minutes.  I got changed into the world's largest robe and then head back for the test.  I was SO cold it was crazy.  Shivering with a broken back SUCKS, in case you were wondering.  After one of the portions of the test I was seconds away from pressing my call button when Phil gave me an update.  I had 3 more contrast-free images to go before getting my IV.  I told him I needed the air turned down because it was blowing into my ear and giving me a headache.  I also told him to let me know the length of each remaining image so that I could count down.  The 15 minute test made me crazy.  For those of you who are not lucky enough to have had an MRI the noise is maddening.  The earplugs are a joke.  Next, came the contrast.  Easy, right?  WRONG!  Phil tried twice and both times my veins had scar tissue in them and he was unable to advance the dye.  UGH.  (Maybe I will love my port.)  Then Jackie came in, she didn't even want to try on my little veins.  Then Melissa came in.  She is a CAT scan tech.  They use jumbo needles so she is good at IVs.  Luckily she was able to get it in right away because I was serious when I said 3 strikes and I am done.  In the past 4 days I have had 5 IVs stuck into my left arm, ouch!  Finished up the scan and was ready for phase three.

Final phase, CAT scan while laying on the newly created body mold.  Oh but wait.  Cindy came out to tell us that the scanner was in use and we had to wait at least 30 minutes.  I was about to LOSE it.  I hadn't eaten since breakfast and at this point it is after 3.  At least this scan did not require another needle.  Around 3:30 they took me back.  The whole process was less than 20 minutes and I was ready to run down the hallway to get the hell out of there. 

The elevator doors closed at 4pm and we were getting into the car to drive home by 4:10.  Stupid 95 traffic got us on the way home too.  Again, thank you Celexa.  That shit helps me keep my cool, I swear.

I know I am not the only person with cancer.  I am not the only person who has to get scanned.  I am not the only person to complain about the chaos that can ensue during a day at the hospital.  But writing all this down helps me and hopefully all my crazy comments and information helps somebody, or makes somebody laugh. 

Not the Smoothest

So I had my chest port put in this morning.  Here is a checklist of everything that happened.

1. Take a Xanax to ensure several hours of sleep.  CHECK
2. Nothing to eat or drink after midnight. CHECK
3. Take daily meds at the crack of dawn with a teeny, tiny sip of water in fear that more than that would push back procedure.  CHECK
4. Leave the house by 6am.  CHECK
5. Beat the traffic on I95 and get there early, CHECK.
6. Get a stomachache during the ride due to stress, DOUBLE CHECK!
7. Get changed, use the bathroom and wait for them to call my name, CHECK.
8. Get my IV on the first try, CHECK.
9. Lay on the very skinny table.  CHECK
10. Doctors clean the area and talk to me way too much to try to distract me from the fact that within the hour a foreign object will be permanently inserted under my skin so that poison can more easily flow through my veins to kill my cancer, CHECK.
11. Drugs pumped into my IV to relax me.  CHECK
12. Lidocaine injected directly into the sight to numb the area (extra for me because I am a redhead and apparently we have extra sensitive nerves).  CHECK
13.  Port and a tube that was far too long for me to think about inserted into my vein.  CHECK
14. Sit up, with nurses help, immediately after the procedure.  CHECK.
15.  Walk a short distance to a chair and have my IV removed so that I could leave.  CHECK
16.  Less than a minute later, turn white, get lightheaded and insanely nauseous, CHECK!!!!
17. Get put into a wheely type of chair and put onto a stretcher.  CHECK
18. Drink water, orange juice and eat saltines.  CHECK
19. Have ANOTHER IV inserted for fluids and anti-nausea drugs because I still felt sick.  CHECK!
20.  Wait another hour or more until my blood pressure, pulse and skin color were normal.  CHECK
21.  Get into a wheelchair and wheeled to the car.  CHECK

I have now been home for six hours and have hardly moved from the couch.  The incision on my neck is much sorer than I expected it would be.  It hurts to swallow too quickly.  It hurts to laugh, sneeze, cough, or talk for too long.  Even though I am in pain, I can handle that.  I hate that I can't hold Hudson for 72 hours.  Even after that time passes I still have to be careful because he could bump the port and I can only imagine how lovely that would feel.

The crazy part about this procedure was how calm I was again.  I usually get so sick to my stomach that I end up spending all morning and sometimes the night before in the bathroom.  Not this time.  I am ready to beat this and the port is the first step to getting the medicine I need to win the battle.  A little pain and the days to come are nothing compared to the 10 months of pain I have been dealing with.  Scan me, prick me, and kill this cancer!

UPDATE (2-21-13): So it has been 4 days since the port was put in and thank goodness each day is less disgusting.  The gaggy, vomity, pokey feeling is lessening with each passing hour.  The pain in the incisions and 6 inch bruise is also fading.  Maybe the doctors were serious when they told me that after 2 weeks I would not even notice it.  Oh except for the fact that anyone can see a lump and tube running under my skin.  Other than that, totally normal! 

Some random, sort of funny, things I remember from the procedure...

I was shocked by how skinny the table was that I had to lay on.  I am thin and I was nervous I wouldn't fit.  I expressed this concern to the tech and asked how larger people (trying to be PC) fit on a table so small.  He says, "Oh, all the fat people have hangovers."  Ha, that cracked me up.  Apparently there are plastic sides that can be added on to hold up people's extraness.

While another nurse or someone was wiping me down with iodine he says, "Don't worry, I will make sure to clean you up so you don't look like Snooki when you leave."  At this point I was covered with a sheet and could not see what he was doing.  Iodine is orange so that they can see where they sterilized before starting a procedure.  He made sure to wipe off the "fake tan" before I left, haha.  Because that was my major concern that day.

Scans & Procedures

I have been poked, prodded and scanned far too many times since November 2012.  Here is a list of all testing that has been done or will be done soon.

1. Annual Mammogram - This was so stressful because I had not had any testing since before I was pregnant.  I had a set of images taken and then had to wait for the radiologist to read it.  The tech came back and told me the doctor wanted more images because she didn't like what she saw!  So, more squeezing, flattening and pain.  (Oh and milk squirting out because I was still postpartum and apparently milk can be in there for up to 10 months!)  All of this stress to tell me that everything was fine but next time I should not come so close to my period.  Well....I had no clue when I was going to get my period because it was still screwy from having Hudson.  Lesson learned!

2. X-ray of my back and ribs - This was easy and painless.  I just did not like that I was being exposed to more radiation again because of my cancer history.

3. MRI of my back and ribs (without contrast) - Another painless test, but LONG and LOUD.  I love how they give you headphones so you can listen to any radio station of your choice.  That would be great if you could actually hear the songs over the banging and beeping of the machine.  Apparently some people fall asleep during that test.  Not sure how that happens since the sounds that machine makes are far worse than any fire alarm I have ever heard. 

4. Dexascan (x-ray of my hips to check for osteoporosis) - Another painless test but more time off work to find out that osteoporosis is not my problem.

5. Bonescan - This test was an all day affair.  I had to get to the hospital early so they could give me an injection of a small amount of radioactive something.  They took one picture then sent me on my way for 2 hours.  I had to drink a lot to help move the injection through my body.  Then I came back and they took pictures for over an hour!  I got nervous because they came in and asked me to turn over so they could get a better look.  That is NEVER good. 

*Side note - all of these tests only showed a compression fracture which all doctors agreed was odd but they were not concerned.

6. Kyphoplasty & Bone Biopsy - Kyphoplasty is a fancy way of saying the doctor puts some cement in the break to hold the bones in the correct place. More info here - http://www.spine-health.com/treatment/back-surgery/description-kyphoplasty-surgery I had to be put to sleep for this which was fine by me because I have had enough painful things done to me in the past.  Knock me out and then poke around, thank you very much!  The doctor took a piece of bone to test for cancer since he was already in there.  Both things were done at the same time.

7. Bloodwork - YUCK!  Unfortunately it becomes a way of life for cancer patients.

8. PET Scan - This was quite a process.  I had to fast and drink lots of water beforehand.  I was also not allowed to workout the day before (not a problem for me since my broken back does not allow for exercise).  When I got there the nurse had to stab me in the arm 3 times before she could get the needle in and inject me with radioactive sugar water.  Then I had to lay still and not talk for an hour and a half while the sugar water did its thing.  That was difficult.  Thank God for my Samsung Tablet.  Oh, I almost forgot to mention the delicious 12oz creamy vanilla smoothie BARIUM drink.  I had to drink at least half of it.  At that point I was so hungry I almost enjoyed it.  A necessary trip to the restroom to empty the bladder and it was finally time to get my images.  The images only took about 18 minutes.  Short in comparison to everything else I had done.  I felt calm during the entire process because I knew I would finally have very specific answers.  Doctors would be able to see all the cancer and build their plan to KILL it. 

9. Echocardiogram - An ultrasound of my heart to make sure it is strong enough to handle some of the chemo meds.

10. Chest Port - This procedure will be Monday, Feb. 18.  I will update this post afterwards.

11. Radiation Fitting - This will be Thursday, Feb. 21.  I will have a CAT Scan & MRI that will both be used to create the gamma ray.  Then they will create a body mold which will hold me in place during the actual radiation treatment(s).

The craziest part of this list is that I did not mention ANY of the tests I had done beginning in January 2008 through June 2010 when I was first diagnosed.  Then all the testing and images leading up to my mastectomy in July 2010.  I now have 7 scars, nerve damage and shoulder and back issues.  All are reminders of the long, hard journey.  Each time I see my scars I am amazed that I survived all I did.  I have another difficult road ahead of me, but somehow I will come out stronger than when I started.  It have survived two very tough situations and I will survive this too!

Why Blog Now?

Well, two weeks after my mastectomy I got engaged.  Nine months after that I got married.  Three months later I got pregnant and on April 6, 2012 I had my son Hudson.  About 10 weeks after he was born I was leaning over to pick him up off the floor when I suddenly felt a sharp, burning pain in my back.  I was unable to get up.  We both lay crying on the floor until I could figure out a way to move.  4 months later I finally got an x-ray because the pain would just not go away.  They found I had a compression fracture in my spine!!  Weird for someone so young to have that happen for no reason. 

The fracture led to an MRI, dexascan (which is a test to look for osteoporosis) and a bone scan.  None of these gave us any information other than I had a compression fracture that was not healing.  Two months after these tests I decided to go to an orthopedic back specialist to get some pain relief.  He put cement in the break to help it heal and while he was in there he did a biopsy.  He was suspicious of a break that would not heal after 9 months.  Since I already had cancer he wanted to be safe.

THANK GOD he did that biopsy.  A microscopic, asshole cancer cell broke free and found a home for itself in my back.  The cancer weakened my bone and it broke when I picked up my son. 

This finding led to a PET scan which I just found out that there is also some cancer in a lymph node in my right armpit.  The crazy thing is that when I had my mastectomy I had several nodes tested and they were all clean.  How the hell did this happen?  At least having this information gives my doctors a better understanding as to how my back got cancer. 

After finding out that I will be dealing with cancer again, I knew I would need to find a way to vent and write down all the crazy things going on in my head.  I have to have chemo and radiation this time so I will document those experiences. 

I am scared shitless about this whole process, but somehow I also have an unexplainable calm over me most of the time.  Maybe it is because I know I have to be strong and kill this cancer so that I can get back to being a mom and wife.  I feel like this broken back has really kept me from being good at anything....my job, housekeeping, raising my son, my relationships etc.