November/Limbo

November:  What have I been up to?                       

Waiting is the worst part.  Some say that I have been in “limbo.” Chemo ended in October. I had all of November to rid my body of the chemo before my bilateral mastectomy.  I tried to keep myself busy.  The busier I am the less I think of the upcoming bridge that needs to be crossed. No secret, I am scared shitless of the surgery and the recovery period. 

Here is a website that will help you understand how I see surgery and what I will be experiencing.  I warn you there are some graphic pictures.

http://kissestocancer.com/about.html

In November, I went to a baby shower. It was so nice to be out and about and not have everyone ask me questions about how I am feeling or what the next step is.  It was so nice to be the old Rachel for a few hours.  No secret, sometimes I wake up and think “no, I don’t have cancer, it was just a nightmare….”  Then I look in the mirror or feel my port and reality sets back in.

In November, I worked on Elisheva’s quilt. It was supposed to be finished before she turned three.  She will be turning five this coming April. I have sat and tried to do a few squares at a time.  Hopefully it will be done soon. Ruthie keeps reminding me that Shua needs a quilt too.  That might just have to wait until the summer time.  No secret, I am dreading making another quilt.  However, my friend Erica’s younger sister once said “what you do for the first child, you have to do for the rest of the children.”

In November, I had one EKG and one breast MRI.  No secret, waiting for these results were nerve racking.  EKG came out fine.  The MRI showed marked improvement on the tumor.  Turns out the poison that I infused actually kicked cancer’s butt!

I was supposed to have a PET scan to determine if the cancer spread to my liver. A previous test had shown a spot on my liver. I was determined to start chemo, so I had an MRI instead. The MRI said it was probably an atypical hemangioma, but I needed a follow-up PET scan after chemo was over. After the doctor put the orders in and the insurance approved it, the first available appointment was the day before my surgery. That would not work. I would not be able to have surgery then.  I did try calling several other hospitals to see if they could do the test earlier and failed big time.  I will have to wait another month and worry about my liver. People and doctors say “it is probably just an atpical hemangioma.”  The problem is I don’t do “probably.”  I was told “it is probably nothing” when I had my mass first biopsied.  It turned out to be cancer.  I was told it is “probably not in my lymph nodes.”  The cancer was in several of my lymph nodes.  I hope this explains why waiting another month for this one test is very hard for me.  No secret, I wished things would have worked out for me just this one time so I could stop worrying for a few minutes.

In November, I colored many pictures with my daughters.  We are working a special project to get me through my 30+ days of radiation.  No secret, radiation is nothing like chemo but I am still not looking forward to it.

In November, I honked impatiently at a car only to find out it was the Rabbi.  Yup I impatiently honked at a religious leader of our community.  Not a shining moment in the month of November.  No secret, I avoided eye contact with said Rabbi when I went to Shul.  I did listen to his Web Devar…..which should make up for the honking?

In November, I did some skyping. I tried to stay away from people and germs. I did skype with family and friends. It is very important to stay connected.  It can get lonely in the house by myself. My greatest skyping moment was with my grandmother in Kentucky.  This past August she turned 89.  She is always full of spunk and positive thoughts.  She has taught me so many things from playing Spite and Revenge to quilting.  She is probably the reason that I am so competitive when I play games.  Even though we were children, she played the game to win.  Just recently she was diagnosed with pancreatic cancer. I was not able to make my yearly summer drive down to Kentucky due to my own cancer and chemo appointments. I have not been able to fly down there either to visit with her.  Last week she had to go back to the hospital because she was not feeling so well. On Thanksgiving she was able to go home. My cousin Suzy set up her computer so we could skype with my grandmother.  I was so happy to see her and have her see my children.  Thank you Suzy for making that happen. No secret, I miss the personal interaction with people.

In November, I went out to dinner with Stephen.  It was nice to go out and celebrate the end of chemo.  I need to thank Alex for watching the kiddies so we could have some alone time.  No secret, I was not all that excited about my dinner.  I will definitely have to go out again (to another place).

In November, I did some time practicing using my right arm more than my left.  I am right handed but I do a lot of things with my left hand. I carry my purse on my left and I carry my Shua on my left.  After surgery I won’t be able to carry Shua for a long time. My left arm will have a higher risk of swelling.  Whenever Shua is near me and asks to be picked up. I pick him up and kiss him lots.  I know that come December, Shua and I will have a relationship from a distance.  He is way more active than the girls.  He doesn’t just sit still.  When he is near me he fidgets, kicks, and attacks me.  The girls are more low-key.  They will sit next to me and look at books.  No secret, I will miss being on the floor with Shua and having him climb all over me.

In November, there were a few days that Shua and I spent all day together.  It was nice to spend time with him and cuddle (the best that I could since he rarely sits still).  It was great to watch him dump all his toys from their bins (yes, anal mommy cringed inside when he did this).  Of course I was exhausted after these intense Shua days but they were so worth it.  No secret, my favorite part of these days was when Shua said “bbb….ball.”  He says a few words here and there. Mostly he says “da da.”  He says “da da” when I ask him to say mommy.  Now, when I ask him to say mommy, he does an Indian war cry…..can’t explain that one.

 Shua did this all on his own.....

In November, I did one “Turkey Trot” at Ruthie’s school.  It was great to see her happy and smiling and showing me all around her classroom.  It was a great bonding experience for both of us. No secret, I loved that I was able to do this with her.

In November, I celebrated the end of chemo with my dear friend Elisa.  She has been on this rocky road with me from the start and she is actually on the road with me.  I have confided in her several times because she truly gets what this journey has been like.  No secret, we will be doing crazy fun things next summer instead of chemo infusions.

In November, I grew some hair.  Just when I was starting to get used to being bald, my hair starts its long awaited return.  I remember being so upset when I lost my hair.  Lenn was right, hair is overrated.  I will still wear hats for a while.  I never realized how cold your head gets without hair until I lost it all.  No secret, I enjoyed the hairless legs and will miss not having to shave.

In November, I had one kidnapping.  I loved being kidnapped by my cousins.  It was great trying to watch Kimmie open the sliding glass door to let the other hooligans into the house.  Elisheva and Shua watched by the window as I was kidnapped with Beau’s leash.  Yes there was crying….by both children.  I heard an earful by Ruthie when I returned that it was “no fair that I got to go play with my cousins and not her.”  It was a nice ride back to the Bader home where we had Chinese food and watched a lot of Friends.  There was lots of laughter and an overall great day.  Thanks Becca aka Becky for bringing the DVD’s to watch. I got a personalized apron….just kidding Lindsey.  No secret, my cousins have really been there for me as I travel through this journey.

 Some of the hooligans....

In November, there have been many, many games of Words with Friends.  No secret, I am addicted!

In November, I used my treadmill aka dreadmill whenever I could.  I find running soothing. I can get out nervous energy or think about all the days occurrences.  I also know that after surgery, it will be some time before I can use the dreadmill again.  In the month of November I traveled 69.2 miles on my dreadmill.  If you are really curious my day by day accomplishment, email me and I will send it to you. No secret, I will miss my time on the dreadmill.

November, you came and now it is time for you to go.  December is here and it is time for my surgery.  I go into the hospital with a tumor and affected lymph nodes.  I WILL walk out of the hospital with no breast tissue but more importantly with no more cancer. No secret, walking out with this physical change will probably hit me hard at first.  Here's to January!

Here is a song that has helped me through this long never ending month:

Monday without Chemo

Monday without Chemo:

Yesterday was Monday.  Every other Monday for the past few months I have gone to Chemo.  Yesterday was the day I should have been at Chemo.  BUT, I am done with that poison!  So what did I do yesterday.  I had a very jam packed day. It all started at 4:30 with Shua's lovely wake up call. I would blame daylight savings time but he has been on this 4:30 am kick for a while.  I got Ruthie on the bus and Elisheva into her carpool.  Off they went to school.  Shua's buddy and babysitter arrived and I headed to the basement to do some running/jogging. I have been trying to use the treadmill as much as I can.  I had a bit of cold last week which made exercising difficult.  Jogged my 3.5 miles while watching Will and Grace.  What a truly funny show.  Then I showered and headed out to pick up some new boots. I wanted to get some new boots but have not been motivated to take my shoes on and off several times.  It was a difficult task to do with numb feet.  I felt that my feet could handle the task yesterday.   I was somewhat successful.  I also stopped by a few other stores while I was out.  I had a nice lunch by myself.   I have found that I have no real appetite around dinner time, so I need to eat a filling lunch. After lunch, I headed home and played some words with friends.  Then I watched an episode of the Big Bang Theory.  I am finding this show a bit funny and it keeps my mind away from thinking about the upcoming surgery.  Laughing is good and this show makes me laugh.  After one episode, I traveled upstairs for a quick snooze. I had my "Elisheva will be home in a few" alarm set.  I am not quite sure how long I was out but I believe I got a few minutes of a nap. 

Overall, it was a splendid day. I got to exercise, eat a nice lunch, and take a little nap.  What more can I ask for?

Plans:

Plans:

Sometimes things don't go according to the plan.  I learned this back in July when I was diagnosed with breast cancer.  Today, mother nature got in the way of my plan.  I was very much bummed about the October snow storm.  I laid in bed most of yesterday.  I would read a book to Elisheva and then drift off for a little bit.  Every time Elisheva would wake me for another story, I would look outside and say out loud "STOP SNOWING!"  There was a few times that Elisheva even got out of bed and went over to the window and asked for the snow to stop for me.

Here is how I spent my day:

My awesome cousins and their new shirts.

Phone Party

Soaring through the air at lightning speed to save the day!

Flying through the air carrying my mere mortal younger brother. 

My brother came home from Boston for the walk.  Slept in New York City because all buses and trains were stopped to NJ.

Awesome shirts!  Thanks Everyone!

Thanks for making the day go by quickly and making me laugh and smile.

Ruthie Toothie:

Ruthie Toothie:


Those that have seen Ruthie lately have seen her loose tooth.  She was constantly playing with it with her tongue and her finger.  Finally, it was hanging by a thread.  I worked at it for a little bit and then she got the courage and pulled it out.  She put it in a sandwich bag until it was time to put it under her pillow.

Last Saturday night she was skyping with a friend.  She wanted to show this friend her tooth.  She ran upstairs and came back with the bag and the tooth.  After she was done showing off the tooth she stuck the bag on the table.



While Ruthie was skyping I was making snack bags up.  I have a shoe bag on a door.  I use this shoe bag to organize my snacks for the week.  I have spots for both girls for every day of the week.  I load up the shoe bag on Sunday with all the snacks.  It is very easy to load up the lunch boxes each morning.

I also made more snack bags. I packed up bags for our trip to the circus. I also packed up snack bags for my chemo appointment.  Needless to say there were tons of Kix bags, pretzel bags, animal cracker bags, tea biscuit bags.

It is now time for Ruthie to go to bed.  She gets all the way upstairs and realizes that she left her tooth downstairs.  She comes down the stairs and this is what happens:

Ruthie: "where is my tooth?"
me:  "where did you leave it?"
Ruthie: "in the bag on the table."
me: "oh, no!  I think I made a snack bag out of it!"
me: frantically checking all gazillion snack bags for a little white tooth.  This tooth was bigger than the last two teeth that she lost but it was still pretty small. I spent a good amount of time checking each bag and rechecking the bag because I can't find the tooth anywhere. I feel absolutely horrible because we have been waiting for so long for this tooth to finally come out.

I decide to stop checking the bags. I look up and notice that the bag with Ruthie's tooth is sitting on the opposite side of the table.  I take a deep breathe and then send Ruthie off to bed with her tooth!

I hope this little story made you laugh. It surely was comical (after the fact).

Running:

 Something to listen to while you read:


Running has always been a huge part of my life.  My fellow runners understand it when I say "I truly enjoy running." One year in high school I even went to running camp. I used to run on the roads all over the place.  Then I got married and had kids.  It was harder to actually run outside.  I bought myself a treadmill. I used to run either at 4:00 AM before work or after Ruthie went to bed.  Then it was after Elisheva and Ruthie went to bed.  Then it was....well Shua didn't really go to bed at a decent time.  He is finally just getting the concept of a bed time and actually sleeping for most of the night.

I have already posted about my Tuesdays after Taxol.  These are great days for me. I can move around freely and accomplish tasks.  I do as much as I can on Tuesdays because I know what is to come on Wednesday and Thursday.

This pictures is for my oncologist.   You have three pregnancies where you gained enormous amounts of weight, 8 rounds of chemo which does all sorts of things to your body, and be mentally preparing for a bi-lateral mastectomy and then we can discuss losing weight.

 

Then I continued to walk for the rest of the hour.  Totaling: 4.6 miles.


Melissa Etheridge says it best:

I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend I run for life

When the song first came out it was a source of motivation when I was running on the treadmill.  Now the song has even more meaning to me. No one ever expects to be the "one" with cancer.  Now, I am running for myself.   Thank you Adele for bringing the song back into my life.  It was a great source of motivation as I used the treadmill this morning.

I promise the next blog will be lighter and will totally make you laugh. Will work on it now and post it tomorrow.

Can't wait for the Walk/Run on Sunday.  I know that the Taxol will make it difficult for me to actually do the walking but I will be there trying my best!  Thank you to all the people that have been working hard to make it happen.   It means so much to me.

Graduation:

Graduation:

What an emotionally filled day.  I was quite nervous today. It was my last infusion. I have stayed healthy and had all my infusions on the scheduled date. This is a huge deal in a cancer patient's life.  Today I was nervous that my levels would not be up to par and the infusion would be pushed back. I had a little cold or allergies this past week which caused me to be very anxious. I paced the house this morning until it was time to leave.  We went through the regular routine.  My levels checked out great.  Then, my port was accessed and the pre-meds were infused.  Wow!  What a relief.  I was able to sit back and close my eyes a little while I listened to Friends in the background and my cousin saying "are you sleeping?"

Me with my "vile" and my awesome shirt.  I was proud to wear my shirt and showed it to everyone. When I first started chemo, October 24th was millions of days away.  It had finally come and I made sure that I made the best of it.

My cousin Lindsey came today with me. She has been amazing throughout this process. She has spent countless hours sitting with me while I was administered my poison.  She has helped me stay warm and safely get to the bathroom.  She has provided comfort and laughter.  She has come to my house when I need a lending hand during the terrible joint pain experiences.  She has come over for a few minutes here and there just to be there for me.  It has made me realize that is what family is all about.  I would never have made it through 8 infusions without you Lindsey.  You have been a rock and  I will never ever forget what you have done for me.  Thank you and I love you.

.

Lindsey protecting the "vile" so I don't lose it this time.......and Kimmie spilling her tea.


Today I had the added company of Lindsey's sister Kimmie.  Together the two of them provided great entertainment for me.  I had one one each side of me.  What a way to graduate.  They kept me laughing and smiling and were there to ask all the questions that I couldn't think of.  Kimmie is one of the nurses in the family.  She had some great questions for the doctor and nurses today.  Things that I never thought about and were very important to know.  Kimmie along with my other cousin Rebecca have given me my Neualasta shot the day after my infusion.  Kimmie, thank you for giving me the shot.  You saved me a trip back to the chemo place.  You let me hang out in my pj's and stay in the comfort of my home where I truly want to be.  You came after your long shifts to help me.  You came when you were not up to driving and found a ride over to help me out.  Thank again for all those shots.  I love you for them......and hate you 24 hours after you stab me.

Yea!  Nurse Kimmie came to hang out with me while I graduated chemo.

After I graduated from Chemo my cousins took me to Carvel.  My doctor gave me a whole speech about after all "this" is over I have to have a life change. I will have to pass by the Carvel.  Little does she know that before I was diagnosed, I rarely ate the food that I loved. I went more than a year without ice cream and chocolate.  Little did she know before diagnosis I was running 9 minute miles 3-4 days a week.  I would usually try to do at least 4 miles during each workout.  Little did she know that my fanatic exercise was the reason that I found the mass which started this roller coaster.  Little does she know that I yearn for my treadmill and the days that I can physically walk or jog I use my treadmill and walk/jog those 4 miles.  Not a 9 minute mile pace but I do it regardless.  Little did she know that during treatment I went 2 infusions without ice cream and exercised and lost zero pounds.  This conversation was a low point in the day.  Stopping by Carvel was very uplifting for me today. Thanks Kimmie for making the executive decision and just driving there.  At Carvel, I picked up a little cake to celebrate graduation with my family. At the last minute, I invited over family and some friends. I couldn't really plan something more in advance because I didn't want to jinx myself. I didn't want to plan something and then my levels not be right.  It was all on a whim.  Don't worry Dr. I didn't eat any of the cake.

Touchdown!  I did it!

Party Time!  Aunt Judy why are you not on the couch with everyone else?  Thank you Rebecca for your card.  That was very thoughtful of you.  You need to get me a cape so I can wear it at the next stage of this journey.  Thank you Elisa for stopping by. I guess I put my camera away when you came. I will catch you at the next bridge and make sure I get some snap shots of us together fighting and winning this battle.

Wearing my graduation hat and throwing it in the air!   Yes those are my honor cords from high school.

Everyone of all ages shared in the ice cream festivities.

Some get excited over ice cream and another gets excited over candles!  Thanks Uncle Mike/Monkey for posing with the candle.


Now for a little Friends clip:  I am technologically challenged.  Just cut and paste the below link and watch the little clip.  Thanks Mitch for finding this.  I tried and failed.  You need to watch it before you watch the other video.



http://vimeo.com/31030187

Listen close and see if you can hear a man's voice in the video.  It connects to the previous Friends clip.  I am sorry that the video is sideways. I am again technologically challenged and couldn't turn it.

  At the end of infusion.  Done!  Finished! No more Chemo!  Over! Moving on!  Next bridge here I come with my support team right next to me!

Routine

Routine:

Most people like routine and thrive in structured environments.   I had my first Chemo infusion on the same day I had my chest port placed in. Honestly, I just wanted to get the show on the road.  I had all of this done at Morristown Memorial.  My following chemo appointments were done in a different building in Parsippany.  It is a smaller facility (more homey) and closer to my house.  Many different people have taken me to my appointments. They have had the opportunity to experience what a typical chemo appointment is like.  Here is a tour of a typical day.

First the waiting room.

I am usually in the waiting room for a few minutes. I sign in and pay.  Yes, each visit requires payment.  By the time I am done paying, the nurse comes and calls my name. I usually don't sit down because we wait in this area for a few minutes.

Then we go to the waiting area for blood work.

I took a picture of Stephen in this area.  I sit in these chairs before I get my finger pricked and after I get pricked while I wait for the doctor.

Here is the Red chair that I sit in to get my finger pricked to have my levels checked.  They need to make sure that my white blood count is good as well as my hemoglobin levels.  If anything is not up to par, I can't not have my infusion.

While I get my finger pricked, the nurse gives me a vile to hold on to.  This vile is used by the nurses to draw blood from my chest port.  I am supposed to keep track of the vile to hand to the nurses.  There was once incident where I lost it.  Lindsey was convinced that it was in my pocket.  It was no where to be found.  At the following appointment the doctor told me that I had left it in the examining room.
Here I am holding my very important vile.

The next place I go is to the examining room to be checked out by the doctor. 

After the doctor examines me I get to chat with her in her office.  First we talk about how the past two weeks went. Then we discuss the next step in the journey.

After I speak with the doctor, she draws up the orders for infusion.  I then go to the "chair" and wait for the nurses to access my port and get the infusion started.

The Chair:

I usually take the first chair.  It is next to a wall and gives me a little more privacy to watch my movies/Friends episodes at a loud volume.  There is a tv in the room and most of the people try to sit near it. I stay away from it so I can hear what I am watching.  During the infusion I usually get really cold.  I usually dress in layers and make sure I have thick socks on to help keep me warm.  There are times that I need a blanket because I am so cold and can't warm up.

Here I am hanging with my pump which is pumping the poison into my body through my chest port.  Next to me I have my water and food bag. I usually bring a whole bag of food.  I will eat the entire time I am there.  Lindsey can vouch for this. As a creature of routine, I usually bring the same things. I know that I have to stock up on food.  Once I leave the appointment, I get the "rocks in my mouth" taste and won't eat for a while.

I am creature of routine.  I have worn the same clothes for each infusion (except the first one).  I wear a gray long sleeve shirt.  The shirt is very comfy and stretches so my port can be accessed easily.  I also wear a jacket to help keep me warm.  I wear a long khaki skirt (thank you Devorah for giving it to me).  It is long and keeps my longs warm.  I also wear thick socks (as mentioned before).  I usually will wear my flip flops.  My feet fall asleep if I wear my sneakers because I keep crossing my legs to try and get comfortable.


October 24th:  That date could not arrive fast enough. It is my last scheduled chemo infusion.  Here is what I will be wearing when I walk into that first waiting room.  (Thanks Elisa, fellow warrior, for my awesome shirt).

I have already warned the nurses that I would be wearing it and they can't get anything on it!  Fingers crossed that my levels are fine and we can get on with the show....