Day 16: Crying ’til I Laugh

The Big ‘D’

I slept fitfully last night, thoughts of my hair not far from my mind.  I know it sounds vain, and those of you who know me from Facebook, are aware that I went through this just about a week and a half ago when the doctor told me I would definitely lose my hair from the chemotherapy.  I was devastated, but was able to come around to acceptance – even humor – and opted to cut my hair off and donate it to Locks of Love (http://www.locksoflove.org/).  There was enough to leave me with a short haircut, and I still felt feminine.

When I woke up this morning, hair covered my sheets and pillow.  And now, faced with the thought of being bald, I just fell apart.  It is quite unnerving to be speaking to someone on the phone, mindlessly scratch your head, and then bring your hand down to see what looks like a dead field mouse in your palm.  I knew that I had to shave it off today.  I could not deal with it falling out in clumps, it was just too discouraging.

Every little thing was setting me off this morning.  I’ve been remarkably patient and compliant during my stay in the hospital.  I’m very low-maintenance as a patient, part of that due to my stubborn independence.  I simply dislike being a burden to anyone for any reason.  But this morning, that patience was completely gone.  The fact that; my sheets were wrapped up in a knot around my legs/the IV in my arm was bothering me/I’ve had a different (new) nurse every shift since Sunday/my fevers weren’t going away/I haven’t seen my kids in a week/I have no clue what the next step in my treatment is for certain/I haven’t been outside in three weeks and dammit it’s like summer out there/I’m still not allowed to eat fresh fruit or vegetables/I’m tired of everyone telling me how strong I am and that I will be just fine/and . . . oh yeah, I have this thing called LEUKEMIA with one of the worst outcome sub-types . . .

finally got to me.

I got out of bed, grabbed my blanket and stuffed bear, rolled Roger-the-IV-pole over to the sofa and curled up in the furthest corner of the room and cried.  For three hours.

My day-shift nurse (yes, another new nurse) came in and compassionately looked at me and asked if she could do anything.  I shook my head no.  For the first time since my diagnosis 16 days ago, I felt myself sinking into that dark pool of depression.  My doctors came in for daily rounds, and they were met with a surprise.  A serious Tammy.  I’ve come to look forward to their visit each day, as my interactions with them are similar to the relationships I have with ‘my guys’ in my department at work.  I joke, laugh, trade barbs and just have fun.  Today I greeted them with a tear-stained face and a snotty nose, and said, “Sorry guys, you are just going to have to deal with Sad Tammy today.  I’m having a moment, and I just can’t get past it yet.”  Each one of the four of them looked at me with genuine concern and assured me that was completely normal.  And they were surprised I hadn’t gotten to this point sooner.  I really do love my medical team – they are top notch . . . and top shelf.  The news they had to deliver was actually very positive today.

1. Count Recovery Stage continues: my WBC count held at 0.3 for the third straight day.  Dr. B. says that I have already hit bottom, and should look for the upswing in a day or two.
2. My repeat bone marrow biopsy is scheduled for tomorrow (Friday) at 11am.  I will be under sedation, so I will not feel a thing.  THANK GOD.  Dr. Alex does not have OR privileges, but the friend of my coworker who is a pediatric oncologist here at RWJ does, and will be doing the biopsy for me.  A nice comfort.
3. If results look good (e.g., Leukemia in remission) they will immediately begin me on Neupogen injections, which boost the immune system.  Once injections begin, I can expect my WBC to more than double each day.
4. I’m still on target to be home by my boys’ 8th birthday on April 3rd.
5. Hemoglobin and platelet counts are still low, so I will receive both blood and platelets transfusions today.

So all of this positive news, and I was just not in a frame of mind to receive it.  But at least it was there for when I was ready to digest it all.  Amanda, my nurse, came in again to change out the IV fluids and to give me my morning meds.  I told her about my hair, and told her that I wanted to just shave it off at this point.  She said that she would be glad to do it for me if I wanted her to, and I accepted.  So when Bill came up to the hospital, I sent him right back out to go pick up a razor.  I went and took my last shower with hair while he was gone, and then settled back to do some work while I waited.

True to form, the Benadryl Amanda gave me pre-transfusion knocked me out again.  And I fell asleep for the next three hours, a combination of the drug effects and emotional exhaustion.

Well Helloooo, Sinead

When I woke up around 3:00, I told Amanda that I was ready to just get it over with.  So we set me up on a chair in my room, she wrapped my shoulders up in towels, plugged in the razor, and… the fun began.  What a weird feeling.  Now, I have *really* thick, naturally curly hair.  I don’t think my head has been cold a day in my life.  But now, I felt the chill of the air on the parts Amanda had buzzed.

We definitely had a little fun with the ordeal… and I experimented with a mohawk.    When she was finished, she stepped back, looked at me, and said, “You have GOT to come with me to the bathroom.  You look gorgeous!”  More than a little skeptical, I dutifully followed Nurse Amanda to my bathroom and looked into the mirror.  Ya know, I have to admit, it was not nearly as bad as I thought it would be.  In fact, I kind of found myself liking it.  There’s a switch.

One thing is for sure, the scalp pain I had been feeling from the pressure of my hair against my sensitive head was now gone.  As was the constant itching.  So I decided to pull out my makeup bag, and do something with my face to make me feel a little more feminine.  I haven’t worn makeup since coming to the hospital, but today was glad I had my mini bag with me.  Felt good to be a girl again.  And the depression started to lift.  I have to take a moment and give a lot of credit to my nurse.  She was super amazing.  Full of kindness and compassion, along with fun and laughter.  I couldn’t have turned things around so quickly without her help.

IV Pain . . . and a Little Practical Joke . . .

Shortly after Amanda shaved my head, I began to have some pain at the IV site.  Long story short, my second IV in a row had infiltrated.  They would need to pull it out and find a new site.  Five nurses and 7 attempts over 4 1/2 hours later . . . I had a new IV.  They had to call in an expert from another floor, and that woman saved my sanity tonight.  When she was done, I told her we should play a joke on my nurse and tell her that she wasn’t able to find a vein (oh, come on… stop thinking so piously… I’ve GOT to have some fun in this place!).  I didn’t expect her to play along, but she did and she even took it to the next level.  She goes outside and closes my door, and a couple of minutes later, the head nurse is knocking and coming in.  She comes over to my bedside, and says, “Tammy, I understand you refused to have the nurse try to put the new IV line in.  What’s wrong?  Is there anything I can do?”  I just innocently look down at my right arm with the freshly taped IV line and the head nurse follows my gaze.  She said, “Wait, she got it in??”  She starts laughing hard, opens my door and yells to the nurses at the nursing station, “They got us good, ladies!  She has a perfect IV line in!”  I could not stop giggling along with the rest of the nurses, and it felt so good.

The nurses here in Oncology are a very special breed.  They deal with a lot more sadness and pain than the average nurse because of the nature of the illnesses

of their patients.  Every one of us on the floor has some form of cancer.  Some are terminal.  Some have poor outcomes.  Many are sickened by the chemotherapy and radiation treatments.  And these nurses give of themselves selflessly so that we can dig deep and find what we need to fight the battle daily.  Sometimes that means holding a hand or wiping tears . . . or shaving heads.  Or letting go and laughing when their patients act silly.  And as I go to sleep tonight, I’m so grateful for these men and women that are sharing my journey with me.  And whispering up a thankful prayer for each one.

A perfect song for today:

Lay Your Head Down – Sinead O’Connor, Brian Byrne & the RTÉ Concert Orchestra