Days 29-38: The Kitchen Sink

When I was in high school, there was an ice cream parlor/ restaurant in Union, NJ named Jahn’s.  A bunch of my friends and I would go there to hang out often after church activities.  I can’t begin to tell you how many stories I have of our times at Jahn’s.  And probably as many pictures in a shoebox somewhere.  There were some great items on the ice cream menu:

The Bombshell: Blow yourself up

Flaming Desire: A slow burn with a fast finish

Brooklyn Kibitzer: Shut up and eat

Screwball’s Delight: Drive you nuts and plenty of ’em

The Pink Elephant: This is not the kind you see on the walls

But the thing that Jahn’s was most famous for . . . and still is in its sole remaining location (Jackson Heights, Queens for the curious among you), is their Kitchen Sink Sundae.  The Kitchen Sink was actually a perfect choice for a group, if you could get enough people to commit to having their black cherry touch your butter pecan nestled between your neighbor’s mint chocolate chip.  It consisted of 8 scoops of ice cream (all one flavor, 8 different, or anything in between), with all of the traditional ice cream sundae toppings covering it in this giant stainless bowl of awesomeness.  With 8 spoons. Why am I going on about Jahn’s famous Kitchen Sink?  It has been a while since I was able to update the blog, and today I’m going to give you my version of the kitchen sink… in an update – a scoop of this, a little bit of that… I hope your rocky road doesn’t mind…

Back to last week: Monday, Day 27

Good grief all these days are running together.  But last week on Monday, the final peach fuzz left on my head started to die off, lose color, and fall out.  It was actually kind of weird looking, almost burnt, and very coarse.  The time had come to jump in with both feet and go sterling bald.  And, because I am just that clueless . . . I went on to YouTube to find out how to shave my head.  Yes, really.  So had my husband bring all of the necessary, um, equipment to the hospital, and I decided to have a blast with it.  Last Monday was actually a really good day for me.  The first day that I felt like myself after the mystery fever.  I was positive, energetic, really happy.  And I threw all of that energy into shaving my head.  🙂  In true Tammy form, I brought my docking station into the bathroom with me, put some Jimmy Buffet on my iPod and cranked it up just a little. 😉  I have to admit… I was dancing in the bathroom.  And it felt good.  So, lathered up the noggin, and systematically shaved the peach fuzz off.  I actually managed to get through it without nicking myself once.  Miraculous, and much appreciated by my nurse who did not want to be the one to tell the doctor that a neutropenic patient cut her head shaving. . . As for the finished product, not sure I like it as much as the buzzed look, but I’m surviving.  I put lotion on it at night, and it feels so soft and smooth.  Very weird.  You be the judge:

Day 29: Central Line, Moving Day and Chemo Begins (again)

I have to say it again – they move fast around here.  When a decision is made, it’s actioned on right away.  Since I would have to go through re-induction chemotherapy, I needed to have a central line put in again.  The last one was removed due to infection, and I have my fingers crossed this time.  Since the last one was on the right side of my neck, I opted to have this one put on the left side.  Interestingly enough, it was tough for the nurse practitioner doing the procedure to insert the catheter.  It is going in at a bit of a different angle than the last, and was a little more painful this time.  But, it went well and I now have a central line in my left jugular.  It certainly beats having my arms stuck countless times a day!  It has been nice to give them a rest, and let the bruises heal and clots dissolve.

I came back from the procedure late morning, and the doctors were doing rounds.  It turns out that my new doctor (they rotate each month) wanted me downstairs in the bone marrow transplant unit (BMTU).  The nurses in the BMTU are very familiar with Leukemia, whereas the nurses on my current floor deal with all types of cancers.  The unit is more isolated, thus offering greater protection from infection.  And finally, Dr. R. wants me to be there to prep for transplant as soon as it is possible.  There wasn’t a bed available in the BMTU when I was admitted last month, or I would have been there from the start.  So then I had to make a mad dash to pull everything down from the walls, pack up all my stuff and get moved downstairs so they could start chemotherapy that evening.  A huge thank you to my mom for coming at just the right time to help me get moved to my new room (hey mom – where’d my q-tips go?!? Still can’t find em!).

The New Room

… was a lot smaller.  More like my original room, but a lot less cheerful.  The room did not get a lot of light, had a really strong smell of urine, and was cave-like in general.  I could not imagine spending the next 3 or more weeks in that room.  I couldn’t figure out where to hang any of my cards/pictures/posters/post its… so I didn’t.  I unpacked what I had to, and left everything else for the next day.  My new nurse came in, and I have to tell you – she was incredible.  She came in to my room to go over my chemotherapy regimen with me, patiently answered all of my questions, and put my mind at ease in general.  I felt cared for, and able to just rest.  Priceless.  Drab room…great nursing.   Totally worth it.

Chemotherapy: Round Two

As I mentioned in the last post, my induction chemotherapy was unsuccessful at putting me in remission.  It certainly did some good, but did not destroy all of the leukemia.  So the next step was re-induction chemotherapy.  And they didn’t waste any time.  About 6pm on Day 29 Post-Diagnosis, I started round two.  Thankfully, the pre-meds knocked me out and I fell into a fitful sleep.

Day 30/31: Head Game

The next two days were not bad.  I unpacked and settled into my room on Thursday, and hung up my sailing pictures and my pictures of my boys.  My two primary forms of motivation.  I put on a movie, trying to distract myself from the boredom that was creeping in.  Physically, I didn’t feel that bad.  This chemo regimen had me more tired than the last.  I would get up in the morning, wash up, walk the hall for exercise and then was in bed by noon for the rest of the day.  The BMTU is a small unit – only 11 rooms – and very isolated.  For obvious reasons, traffic is kept to a minimum to maintain as sterile an environment as possible.  But the more isolated I felt, the more I started to withdraw.

It is very easy to get locked into the cage these four walls provide.  I have a routine that is dramatically different from my ‘outside’ life.  Most of my day is spent alone, except for brief interactions with my medical team.   And I find myself pushing the world away – not intentionally – but to cope.  I still read every single email, text, post and listened to every voicemail.  But just could not find the mental will to respond.

By the time Friday came, my day nurse started to pick up on my melancholy.  We were talking back and forth, and I mentioned how much I missed seeing the sunshine along with being able to look out the window from my bed (the window in my current room being on the other side of the bathroom).  She told me there was a room that was open two down from mine… that had double windows… that could be seen from the bed.  She said to go take a look and see if I liked it (DUH?!?!).  I practically leapt from the bed, hustled down the hall with my mask on and Roger the IV Pole in tow, and took one look … and cried.  Yeah, I did.  It was exactly like the room I just came from upstairs – sunlight pouring in, and a little bit bigger.  I ran back (okay, shuffled with Roger) to Nancy and asked how soon I could be switched.  Next thing I know, I’m tearing down pictures from the walls (again) and throwing everything on my bed.  My tech, Susan, started moving everything from my bathroom, fridge and closet… and wheeled the whole bed into the new room.  I had the best night’s sleep that night.  After I took everything off it and put it away that is.  😉

Day 32: The Best Mom in the World

I was feeling very alone on Saturday.  It was the day before Easter, Day 4 of chemo Round 2, and I was tired, and spent, and plain old missing being a mom.  One of my boys had a stuffy nose, just a cold according to the pediatrician, but made it impossible for him to come up to visit.  The boys are not allowed into the BMTU, so I have permission to put a mask and gloves on, and go to meet them in the waiting area right outside the unit.  Not as personal a visit, but at least I get to see them.  It had been three days since their last visit, and I felt it in my heart.

I had asked my mom a few days earlier, if she would do my Easter basket shopping for me for the boys’ baskets.  I gave her a list of things to get to put in them, and she said she would take care of it and have a lot of fun in the process.  I knew I could count on mom to do just what I would have done – we think so much alike.  Mom went one step further, as only she could.  When she came up to visit me, she had her arms laden with bags.  Next thing I know, she is unceremoniously dumping out a huge pile of Easter basket gifts and candy and fixings on my bed.  I was so moved by my mom’s thoughtfulness, that I started to cry.  She brought up all of the items and the baskets for me to put together myself for my two precious boys.  Mom – you have *no idea* what a gift that was to me.  It was the first time in 36 days that I did something for my kids.  I felt like a mom myself again.  Even now, a week later, I’m so moved by what you did for me.  I love you mom – thanks for being amazing.

Day 33: Easter Sunday

My mom continued that awesomeness on Easter Sunday, when she came to visit me after church.  She put together an Easter basket for me that was filled with my favorite things.  Reese’s PB Cups, of course.  Truffles… Graham Crackers (odd, I know, but it goes back to when I was pregnant with the boys.  My first meal post-partum was graham crackers and cranberry juice.  Nothing ever tasted sooooo good!) . . . and the signature white chocolate bunny.  When I was a little girl, I only wanted white chocolate.  Just loved the milky flavor and the way it melted on my tongue.  Kudos, mom.  You gave your girl an extra boost by your sweet thoughtfulness yet again.  Can’t forget to say thank you to my husband, too… for the Snickers Peanut Butter Bunny.  🙂

Unfortunately, one of my two munchkins was still not feeling well, so I was only able to visit with one of  the boys.  He and my husband came up after their church service, mid afternoon.  And we had fun being silly together and visiting for a short time.

Days 34/35: Chemo Ends… Stomach Pains Begin… and Watch Out – Girl Has Got a Gun

Had a really brief visit from a friend on Monday, the same one that taught me to target shoot a couple of months back.  He came in with a bag and handed it over to me.  I opened it, and started laughing like I haven’t laughed in ages.  He bought me a Nerf Revolver, 6 shooter.  And 200 rounds of extra Nerf ammo.  I’m told that I laughed so hard I turned red from shoulders to the top of my bald head.  😉  John – THANK YOU – for giving me such a fun gift.  Now I can practice proper gun handling….  while shooting up everything in the room when I’m bored…mad… happy…. frustrated…going off the deep end…  You are an awesome friend.

The Easter candy still remains untouched after almost a week.  Easter Monday also brought the familiar stomach pains that I experienced during my last round of chemo.  It felt more like reflux/heartburn, though eating and holding things down was becoming a challenge.  The doctors changed my anti-nausea medication, and added a few things – also switching to IV Protonix, rather than pill form.  Monday night, I ordered just chicken soup and lemon sherbet for dinner.  They went down okay . . . but did not stay down.  By 9:00 pm, I had the worst stomach pain I could remember

in a long time.  Barely made it to the bathro0m (TMI alert) and threw up all of dinner into the garbage can.  I rang the call bell in the bathroom, and my Tech, Judy, came in.  She stood over me as I was sitting on the toilet, my head in a bucket, crying my eyes out and begging her to make it stop, and gently rubbed my shoulders and neck.  The simple, caring touch of another human is so priceless at a time like that.  Judy called my nurse in, and she paged the doctor.  They prescribed morphine for the pain, and zofran and reglan for the vomiting and diarrhea.  Which was still ongoing.  What an awful, exhausting night.  Finally, after two shots of morphine and an oxycodone, I was able to fall asleep for a couple of hours.  Still managed to snap a picture of my last bag of chemotherapy (nicknamed Papa Smurf).

Tuesday was much of the same.  Pain medication around the clock, and unable to eat anything other than sherbet and applesauce.  The only bright spot in my day was the delivery of my road bike and trainer to my room.  Thank you Gary and Ali for going to my house to get my bike and bringing it here to me.  You have no idea how much that lifted my spirits.  Your visit was really short, but really sweet.  And Ali and I are now twins with our bald heads.  🙂  The nurse sanitized the bike, and it was put in a perfect spot, where I could look out the window over the Rutgers campus as I rode. Hopefully Wednesday.  Today, just content to go to bed and rest.

Day 36/37: Sore Throat and Endorphins, Baby!

Wednesday I woke up with the same stomach pain, and added to that was a sore throat.  Couldn’t swallow a thing.  Even tea hurt.  Determined to try and not get into a funk, I put my cycling clothes on (damn, it felt great to at least FEEL like an athlete again!), put my cycling shoes on and got on the saddle of my bike.  Put on the heart rate monitor, so as not to freak out the medical staff . . . and clipped in to the pedals… and slowly found my cadence.  I managed to go 20 minutes, just enough to energize me and get those positive endorphins flowing.  Wednesday night brought some relief from the stomach pain finally.  I was given heavy doses of miralax and senekot, as the chemo and pain medication had effectively ‘clogged the pipes’.  Same thing as the last round of chemo.  Unfortunately… I did not sleep much that night as I was up and down going to the bathroom.

Thursday was the turning point.  I woke up feeling better, no stomach pain, feeling really energized and upbeat, the only real discomfort being my throat.  The best way I can describe the pain is by saying it feels like there is a knot in my throat when I swallow. I’m told this is very common with the chemotherapy regimen I just completed.  I had a nice cup of tea for breakfast, and also managed to get down some scrambled eggs and applesauce.  I spent some time in the sun at the desk in my hospital room, catching up on work and emails.  After breakfast, I changed into my cycling clothes again, cranked up some workout music on my iPod, and hopped on the bike for a good ride.  Managed to do 6 miles in 30 minutes.  Slower than I used to be, but it felt SO good to break a sweat.  Now, I have had this 1000 piece puzzle (sailing theme <grin>) since I came here 5 1/2 weeks ago.  And it’s been calling my name for days.  I finally determined that I would wash up after breakfast, and sit down and work on the puzzle.  But… then was told I had to have a transfusion, due to low hemoglobin.  Sigh.  Benadryl and Tylenol pre-transfusion . . . I was going to be napping this afternoon . . . No puzzles for me.  Still, a great day from start to finish.  The attitude is finally on the upswing.

Day 38:  My Journey Will Have Meaning!

Today is day 38 since diagnosis.  I have been in the hospital for 42 days – 6 weeks.  That is longer than it rained when Noah was confined to the ark.  I woke up very early, my mind was just full.  Actually, a really good sign.  That is normal for me – to wake up with my inner ‘to do’ lists multiplying like rabbits in my head.  I opened the laptop, and caught up on my work email.  One of the first things I opened was an email from the speech writer for my company’s Chairman.

A little background: during my first week in the hospital, I sent an email to my department at work, just to let them know I was okay.  That I was ready for this fight, and I would fight hard.  I told them to not worry, but rather to do their jobs – because every job in the company is mission critical to finding cures for various cancers (Note: I’ve posted the original email here: https://the-road-less-traveled.net/it/).

Little did I know that email would make its way beyond my department, but to the CEO of my company… to the head of Oncology for our parent company, and now to the Chairman/CEO of the parent company and company-wide.  It was a tad bit overwhelming. 

Back to the email from the speech writer… a week ago, he contacted me and asked my permission to use portions of that original note to my team in the speech he was preparing for our CEO’s induction as Chairman of PhRMA.  I gave my permission, and this morning, started my day by reading the final prepared speech that would be given at today’s induction ceremony.

Wow.  Forget my part of the story.  That speech made me want to jump up and get my tuchus in gear and start DOING something to bring awareness to this form of cancer that I have.  And to the marrow/stem cell donor registry that is being used to find a life-saving donor for my stem cell transplant.

If in some strange, twisted form of logic, I have to go through this journey so that I can have the experience and knowledge to reach out and share with others and bring awareness – then so be it, every moment is worth it.

I’m not a superhero.  I’m not anything extra special.  I just have a huge capacity to love and care for others.  An overactive mothering instinct, if you will.  I inherited it from my mom, who taught me to give the shirt off your back for your neighbor, even if it means you go without one.  She is an amazing lady.  And because of her influence, I cannot – and will not – sit here and feel sorry for myself and do NOTHING to fight Leukemia.   We are all part of one great big community.  A diverse one, to be sure, but we are here together – to support and lift each other up.  To reach out and offer a hand when someone cries for help.  To be the strength for one, when that person has lost their own.  To go through minor discomfort so someone can have a chance at life.  This journey will have meaning.  You can bank on that.

Will you partner with me?  An easy way to start is by signing up to be a bone marrow/stem cell donor.  For more details, visit the National Bone Marrow Donor website:  http://marrow.org/Home.aspx

And now for the cherry on the Kitchen Sink:

(in honor of one of my awesome kiddos… who sings this at the top of his lungs with great joy!):

I Gotta Feeling, The Black Eyed Peas