When there are times as a grown woman that I have to be as
dependent as a newborn, I latch onto the times that I can be independent with
vigor. Sometimes this causes a riff between those who want to take care of me
and me, but I have always enjoyed spending time with myself and the feeling of
accomplishment of doing something on my own. When I can be functioning by
myself again is when I know that I’m past the peak of whatever current hurdle
I’m jumping. I’ve grown up and am much better at asking for help when things get messy and
unmanageable, and I’m also better at asking for no help when I know I’m
perfectly fine – like a kid who doesn’t want his mom to catch him at the bottom
of the slide anymore.
My pain was under control as of Tuesday evening with the
placement of a pain patch on my belly. It delivers very low dose, continuous
medication to manage the bone pain I’m experiencing in my pelvis and will keep
experiencing until the initial tumor blow-up process is complete. It cuts the
pain completely, without leaving me overly drowsy and loopy and eliminates the
up and downs of oral medications and the nausea they leave me with. For the
first time, ever, I have an actual pain management plan. I’m grateful I’ve made
it this far without having to have one, but now that I do, am grateful
that I’m with a team that has done so much to ensure my comfort.
My patch and I took the train in on our own, eliminating the
need to do any driving by taking Amtrak from a more local station. The seats
were comfortable, the train car was warm, and I was able to work on some writing
with power and WiFi access. I dressed up in business casual clothes as I felt
in a business casual mood, not a cancer patient mood.
From the Penn Station cab line, I stepped into the most Zen
cab I have ever had the pleasure of driving in. Zen and New York City cab are
usually pretty far apart on the relaxation spectrum. I closed the door shutting out the sounds of the insanely
busy hub that is this midtown transit center and was surrounded by beautiful
notes of classical music. I told him where I was headed. At the first stop
light we hit, I noticed that he pulled the New York Times crossword puzzle from
the console over to his lap. He scanned over the clues and I saw that most
of it was already filled in.
“What a great way to pass the time at stoplights,” I said to
him.
“It’s what keeps me sane,” he said, and continued to explain
to me the relaxing atmosphere he works to create in his cab. “The only
complaint I get is that I don’t drive fast enough. But I won’t do it; I’ll have
them get out and find another cab.”
He was in his late sixties, intellectual grandfatherly
looking, wearing thick frame glasses and layered sweaters. He told me how he
owned his cab, so he likes to keep it in good shape rather than slamming the
brakes and the gas all the time as others do. I told him how one driver had
taken me on a ride right over the sidewalk when he got too impatient with a
garbage truck blocking he road ahead of us. We laughed.
We talked about my writing. I explained the difference
between blogging and "Twittering". He told me about his time working as a men’s
clothier in the city, but how he moved to North Carolina to raise his kids.
It was like joining someone over a cup of Earl Grey. He dropped me at the clinic and told me he’d look for me at Penn Station again, though admitted that in the four years he’d been driving, he never drove the same person twice.
It was like joining someone over a cup of Earl Grey. He dropped me at the clinic and told me he’d look for me at Penn Station again, though admitted that in the four years he’d been driving, he never drove the same person twice.
My 11 a.m. appointment actually commenced at 11 a.m. – and
it was done at 11:45 a.m., the last 15 minutes just spent talking about the
impending blizzard, the benefits of California, and skiers vs. beach bums with
the nurse and clinical research coordinator. The team had to do vitals, a
visual check-up and take lots of bloodwork from me as part of the protocol. It
was smooth and easy. All blood counts look great.
I confessed my worries and insecurities about being on the
pain patch to the nurse. I told her I was worried that with each lasting 72
hours, what if my pain goes away and I’m covering up nothing? What if I get
addicted? Should I try to stop it, see if the pain comes back, then wait
another 13 hours for a new patch to kick in? She calmed me by looking me
straight in the eye and saying:
“Do you feel okay? Are you pain free?”
I nodded in agreement. It was as if I felt I wasn't entitled to that.
“Then just go with it,” she said and told me that with all
that I have to worry about, being addicted to pain meds is the least of it. I
am on a very baby dose and those that get addicted are those that are using
drugs without having any pain. These pain patches are much safer than popping
lots of pills as it keeps things controlled and consistent and not so harsh on
the body. She explained that these drugs are built for pain like mine and help
calm all the receptors that go off when the body is experiencing pain so that I
can sleep and eat and heal, which is very important.
“So just relax, let it go, let’s not do any experimenting
right now,” she told me, knowing that I’ll be traveling to San Francisco next
week. I can breathe easier after our little talk and am accepting this help
that my body needs right now. I know it’s eliminating lots of physical and
mental stress, which is certainly a good thing.
With three hours to kill before my train home, what was a
girl to do on Fifth Avenue in mid-town Manhattan with a 3-story H&M right
there on the corner? I lunched on a Panini then settled into the H&M racks
for some retail fun, including the purchase of a $15 pair of bright pink pants that
make me smile. I then decided to walk the 20 blocks, 2 avenues back to Penn
Station. Sweaty from carrying my laptop on my back and with tired muscles, I
grabbed a protein power smoothie and sunk into my train seat where I promptly
fell asleep.
Today has been beautifully lazy huddled in for the "Blizzard of 2013" with Craig and Sam Dog. Nowhere to be. Lots of entertainment to be had from local newscasters reaching for new ways to say the same thing and their use of ridiculous visuals to illustrate the conditions. There's cookies to be baked. Candles and blankets at the ready. Everything we need.
Awesome - you are weathering all kinds of storms with grace and strength! Also, I just love the cab ride story. What a wonderful driver.
ReplyDeleteHi Karin
ReplyDeleteMy name is Anniken. I'm a 26 year old girl from Norway. I just wanted to say hi and that you're a huge inspiration for me. I've been following your blog a few months now. I have Hodgkins as well, about to do a mini-allo.
Norway is a very small country. Only 10 people with Hodgkins have done allos, of whom only 3 is still alive. I have no idea who these 3 people are. Therefore I am so glad that you're writing a blog. Although we live a whole ocean apart, it's nice to know the thoughts of someone who has went thorugh the same things.
I'm so glad you're not in pain right now. I hope and pray that this new chemo regimen of yours will do wonders. I wish you all the best.
Anniken, wow. How incredible to hear from someone in Norway! Thank you for reaching out and sharing your story. I wish you all the best as you enter your mini allo. My best advice is to stay focused on the end point and remember that the tough times will pass. Please feel free to e-mail me if I can help to answer any specific questions as you're going through things or if you just want someone to connect with that understands. I'm sure it must be very hard being one of such few in your country to go through this, but be assured that this happens all the time in the states and the science is there. Just keep breathing. Much love to you!
DeleteKaren,,I've been using that baby patch for a very long time now. If you're using it for pain like yours, there is no chance of becoming an addict hon. It has made the hugest difference in my quality of life with everything I've tried for pain (including doing without!). Just don't forget to change it when you need to. You're in my thoughts & prayers. Keep on fighting the good fight.
ReplyDeleteAs always, praying for you Karin! I'm glad the nurse convinced you to accept the help the patch is providing.
ReplyDeleteI also wanted to comment to Anniken (two comments above). I wish you the best with your treatment!
Oops - the anonymous comment above is from me, Sarah B.
ReplyDeleteBest wishes to both you and Anniken. Two great people - two great countries...
ReplyDelete