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.

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13 responses to “The update where I complain about everything

  1. Did you know that Klein in German means small? Kein means none. So I am wishing you kein Klein when it comes to medical expertise – only excellence. Keep fighting.

    • J – I’m glad to have nein Klein. My new doctor and her team is great. I should have switched a long time ago. Thanks for all the funny and great comments on my blog. You are always first to post. My biggest fan. Hope to see you soon. -s

  2. You and Jen amaze me. I can’t remember when I found your blog for the first time, but I remember thinking : “it’s strange how much I feel like I know these two people, even though I’ve never met them’. You are both incredible beyond words and everytime I have a new email from Jen it makes me smile, laugh and feel warm and fuzzy. You’re good people. All the way through, good people. We think of you often and wish you only the happiest and healthiest vibes. And no rashes. Or (insert bad word here) oncologists, pharmacists or morons on the street. I really do hope one day we meet in person. Love to both of you.

  3. Eek. This all does sound very frustrating and exhausting, but you’re right, it’s a means to an end. It’s good to hear your determination, and to know that while it completely sucks now, it will not always suck. I’m reminded often that we never know what’s going to be thrown at us. It’s inspiring to see you and Jen pull together and fight this; you are a model for the rest of us.

  4. You are the most eloquent and compelling complainer of all time. i have a crush on your writing, please don’t tell Gar.

    we wish so much that we could be there to drop by and deliver some food and make you laugh. xx

  5. Thinking of you.

  6. perspective. it is oozing out of your blog.

  7. Hey, Stephen,

    I am a friend of Jonathan’s and he told me about your blog. You are amazing, you know? Going through this stuff and making people smile (your wife and the calamine lotion, for one)? I LOVE that you are getting the care you need now. Good on you for making the switch.

    As to your name, my cousin Stephen was on the phone, trying to tell a mail order operator how to spell his name. “It’s ‘Stephen’ with a ‘p’,” he explained. And sure enough, his package came addressed to Psteven.

    Your new friend,
    Carmen

    • Carmen – Thanks for the funny story. With my last name, I’m not used to people messing up on the first name. I’d like to be referred to as Psteven from now on, tho. Thanks for the support. -s

  8. Jerk Brookbank

    Hit us up for the home cooked meals, homes!! And we are absolutely CHOMPIN’ AT THE BIT to get back in the oncology wing!!!

  9. Pingback: Beeping | A Mental Journey » jenberry photography

  10. I’m a bit like the try hard nerd teen at the moment with my “OMG me too!” but this is the first lymphoma blog I’ve read…and OMG me too with the rash from the adhesive. It was crazy. I kept thinking, “Disease progression”.
    I’m in Australia and the hospital food is really bad. I’m on a “nourishing” diet, but I gag when the nurses read out the menu to the illiterate patients.

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