Tag Archives: PICC line

More of the same

I look in the mirror and I don’t recognize myself anymore. No hair on my head or my face. Deep black pockets around my eyes. Tubes hanging from my arms. Scars on my side. What happened?

It is frightening sometimes. Looking at the rows of pill bottles. Getting myself psyched for my blood thinner shot every day. Even the cheeriness and smiles of the nurses and doctors have a macabre feeling about them. As if there is a big secret that no one is talking about.

And then on other days I rise to the challenge. I stare at myself in the mirror and think I look pretty good. The little pimples don’t bother me (see Pizza Face blog post from a year ago). I see a little glimmer in my eyes somewhere inside the dark holes. The fact that I can even get up and stare myself down gives me a little thrill.

Lately, I haven’t been sleeping well. A lot of insomnia. As if I spend my days distracting myself and at night my mind opens up to all the possibilities. Its not like I lay awake at night thinking dark thoughts…I just think all my thoughts that I put out of my head all day.

This is another reason why it is sometimes difficult for me to write updates. I don’t want to be full of complaining – and trust me, if I listed all of my complaints in every post you would stop reading. But I also can’t pretend that I’m cheery and full of jokes, as I was for a few months last year.

Mostly, it is just taking advantage of the good days and not lingering on the bad ones. And, unfortunately, I don’t usually know which kind of day it is going to be until I’m already in the middle of it. I’ve had to postpone getting together with friends and turn down dinner requests. And even on my good days, I don’t always want to sit over a cup of coffee and ‘catch up’ about my situation. Sometimes I just want to go out and live a little.

It is confusing. I’m trying to keep focused on the big picture, the main mission, rather than dwell on each little difficulty, each shot, each pill. Keeping in mind the ultimate goal is a good way for me to push through the pain, irritation and suckiness of cancer treatment. Chew it up in small bites which will add up over time. And when every meal becomes an endurance test to overcome my sore throat and take in a meal, it does help to take small bites.

I’ve gotten a lot of great pick-me-ups over the past couple of weeks. Thanks for all the cards, gift certificates (which go to excellent use), dinner options, treats, books and music. Everyone is being very kind. I especially appreciate the things which help make both Jen and mine lives a little easier. I say a thank you for each smoothie that someone paid for.

Speaking of giving…Jen is working on an amazing project to get DVD players and movies available for every oncology hospital room at UCLA Santa Monica and Ronald Reagan in Westwood. I’ll let her do the talking…she expresses the loneliness and frustration of being stuck in a hospital room in a more eloquent way than I can put into words. Please, visit her blog and consider making some kind of donation. It will brighten up the lives of a lot of lonely, frustrated and sick people.

Donations through Giftberry here

Instructions on donating directly to hospital and Jen’s blog post here

I’ve also been touched that other cancer patients have written me some comments on how my blog is full of information and they appreciate me sharing my experience. I find my greatest comfort in talking to other patients…I hope some people can find some comfort in my words.

So…yes, last week sucked. My red blood counts are low, so I’m tired. My throat hurts. I’m waiting for my white blood cells count to come up so I can shake some of the pain, swelling and discomfort that I’m feeling. I have a couple weeks of until my next treatment. But I’m anxious about my upcoming PET scan – hopefully, the end of this week. I’m in a holding pattern.

Instead of sitting around watching the clock, I’m trying to take advantage of every good day. See friends. Enjoy fresh air. Walk hand in hand with my beautiful wife.

I’m less than a week out of the hospital and today was a good day. I’m looking forward to more of the same.

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The update where I complain about everything

Oh my.

Let’s start from the end, shall we.

I go to CVS pharmacy today to pick up 2 prescriptions. Tell the lady behind the counter my last name. She repeats it. I repeat it. She looks for prescription. She asks my name. I tell her my first and second name. She repeats it with a question. She looks for prescription. She asks me my name. I hand her my driver’s license. She repeats it. She looks for my prescription. She pulls an envelope. She looks at me says “Steph-an”. I say “Stee-ven”. She says “Steph-an” with a frown. I lean in and say “I’m 35 years old, I think I know how to pronounce my own name.”

Then it takes 5 more minutes to find my next prescription.

Why am I starting with this story? Is this only one particular episode of annoyance or stupidity on the part of one random pharmacist? I wish.

For all of you that have left me messages or sent me emails that I haven’t returned, please remember: I have to deal with something similar to this story about 5 times a day right now. Nurses. Doctors. Pharmacists. Home nurses. Everybody has to hear my story. Everybody has to approve me, change an appointment or confirm something. It is absolutely exhausting. Jen takes on a lot of this, but we share our frustrations. It grows and grows until by the end of the day I want to curl up on the couch with a blanket over my head – not only because I’m exhausted and suffering from chemotherapy, but because dealing with people all day about my healthcare is excruciating. And, it is currently my full time job.

The problem was so serious that I changed oncologists. Not a light decision. The 7 days I spent in the hospital, my oncologist never checked in on me once. Even though we SAW him in the hospital corridor, he never called or dropped by or followed up with me. We spent the entire time trying to juggle the resident M.D. and the floor oncologist (who was a dick). Although UCLA is a great system, it is only as strong as its weakest link. And I think I suffered from a lack of management over my case while I was in the hospital. There are a couple of serious things that were overlooked or mishandled that ended up with me having more pain and spending more time in the hospital than necessary. And, with that, I made a change for the better.

So long, Dr. Klein. You're not so super.

I saw my new oncologist yesterday for the first time. The experience was so warm, so supportive and so thorough that I had tears in my eyes when I thanked everyone in the office. For 7 days, I felt lost, like no one was really taking responsibility for my case. And my new oncologist – and her entire staff – erased that feeling. After a 2 hour appointment, they even called last night to follow up…AND THEN AGAIN THIS MORNING AT 10AM! A huge step in a new direction.

My new oncologist will be referred to as Dr. PB. And as soon as I find an appropriate Muppet or Peanut Butter image on Google, I will post an accompanying photo.

Let’s see…some more things to complain about….

I handled my chemo fairly well while in the hospital. The low BP and fevers was alarming. Followed by nausea and fatigue. Now, I have mouth sores and a sore throat, which is the chemo attacking the poor cells in my mouth. So I’m doing a lot of oral maintenance to stay on top of things. Difficult to eat, but I’m rolling with it. I’m confident that I can take on the next round of chemo as long as I stay on top of some other things.

Like, for example, we found out I’m allergic to a family of antibiotics. I have ‘Red Man Syndrome’. Which, I wish was as cool as Green Man, but alas.

GREENMAN!

I have a rash over my whole body that itches like crazy – an allergic reaction to stuff they gave me in the hospital. Not really anybody’s fault, and I’ll never take those antibiotics again. Lesson learned. And the itching is finally getting better. Although I’ll miss Jen literally pouring Calamine lotion over my body at night. Sexy.

Also, while in the hospital, I developed a blood clot in my arm. It was causing me quite a bit of discomfort. And, even though Jen told the oncologist (the dick one) about it on Sunday, he dismissed us. On Tuesday, they finally gave me an ultrasound and lo and behold! They put me on blood thinners hoping to keep on top of any other blood clots. The problem is, that if they would have to pull my PICC line because of infection or clots, my body doesn’t leave them many options for ways to insert catheters into my bloodstream. It is a real concern…that no one seemed to be particularly worried about until Tuesday WHEN I HAD GOT THE PICC THE PREVIOUS WEDNESDAY AND MY ARM WAS SWELLED UP LIKE A LITTLE BALLOON.

I actually wrote an email to my interventional radiologist who has been with me for over a year – and my 1:30pm email was the first he heard about my PICC problems. No one had paged him. Again – I chalk this up to a lack of proper management by my oncologist.

Oh, and I had a rash on my arm where the plastic dressing was over my PICC. At my new oncologist’s office, they gave me allergy free tape and my arm has less pain, no redness, no itching and the pain has reduced by 90%.

I talked a bit with someone today about pain. I think I have a different view of pain than other people now. For me, there is acceptable pain – pain that leads to me getting better. The mouth sores or the Neupogen bone pain or the nausea. But allergic reactions to antibiotics and gauze are unnecessary pain – and I have no more tolerance for that.

A friend asked me a couple of weeks ago if it hurt when I got my catheter pulled out (this being a urinary catheter after my surgery). My response, and my new mantra is: “Everything hurts”.

With that in mind, I reframed the pain I’m experiencing as being a necessary part of my experience. When I have to get another bone marrow biopsy, I’m not going to enjoy it. But it is a mean’s to an end. And, if my caregivers are sensitive to my pain, then I’m sure I’ll make it out the other side okay.

Whew.

Many thanks to Allen for writing me a message telling me that he found help and inspiration in my blog as he was just diagnosed with a similar condition of Hodgkin’s Disease. I’m writing this for fellow patients and for people to keep up to date on my condition. It was a good reminder of why I go through the trouble.

Last year, I had a flippant attitude about entering treatment. And that strategy completely failed me.

This year I am armed with patience, understanding, priorities and ambition. Along the way, different people earn my trust – my new oncologist, my interventional radiologist, friends and family. But not everybody – I’m thinking of you, pharmacist lady.

(Side note: The pharmacist asked me where my name was from, and when I told her it was Russian/Romanian she said something like “I’m familiar with the name because I’m from Sweden.” I mean – what the hell are you supposed to do with that kind of answer? Mind boggling.)

For everyone who wants to keep in touch or offer some help: I appreciate all of it. I really do. But, for example, right now it hurts to talk and eat. Tomorrow, I might sleep for 6 hours. I have appointments Monday and Tuesday. Things are difficult and busy. And we will really, really tell you if you can do anything for us. I’m planning on hitting up a few people for some free, home cooked meals. There will come a time when I’ll be bored in the hospital again. I’m looking forward to meeting you for a Jamba Juice and catching up soon.

But for now, I’m happy to be home with my beloved wife, catching up on Mad Men and enjoying the fact that I don’t have to answer every phone call or text or email. Although, I am happy to get them all.

Whew.

Much love. I hope this gives you a good idea of where I’m at. I’ll post more about what’s to come.

Oh look, rent’s due

Side effects may include nausea.

Side effects may include nausea.

Still cleaning up after the chemo party yesterday. I was supposed to start at 1:30pm…didn’t get the action rolling until 5:30pm…then I still hadn’t started the full treatment until Family Guy was on around 8pm. Fell asleep with a long, slow drip in my arm. The lesson – try to squeeze your treatments in-between nursing shift changes.


So what can be said about this process that hasn’t been said somewhere before? I need to shoot-up through a regular IV until they can put in a pikline. But because my veins are all clogged, we’re not sure when/if I’ll be able to get the more convenient line. I’ve been stabbed more times this past week than a bodyguard at a Rolling Stone’s concert (heey-ooo!)…but a small price to pay for the results.


One of the drugs is known as the ‘Red Devil’ and it turns your pee bright orange. One of the drugs makes your veins sting. And all of it sucks.


The doctor is impressed with my reaction so far. I’ve already dropped from “Alec Baldwin” level but still have yet to re-attain my David Duchovny status. The lump in my neck is softer, breathing is clear, swelling reduced.


Energy is up. Stomach is stable. Appetite is good. Home.


I’ve got to hide out for awhile. Keep my strength up and immunity strong. And catch up on my Tivo.


Will see you soon.