Monthly Archives: July 2010

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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Well, this sucks

I am somehow stuck in the longest weekend of my life.

I came in the hospital on Wednesday, got my PICC line inserted that day and eagerly anticipated chemo on Thursday. The first night went pretty well – no reactions to speak of.

I get different amounts every day. And on Sunday I had a bad reaction to something. My blood pressure plummeted and I’ve been fighting low grade fevers. I’m through the chemo – now I’m just here for observation. I thought I was going to go home yesterday, then today, now tomorrow. They don’t want me to leave until they figure out what’s causing the low fevers.

With that in mind, the doctor told me that my blood cultures should show an infection. But they might not. They thought they were going to pull the PICC line, in case that was causing an infection. But wouldn’t that show up in the blood cultures? Or not? I love doctor speak where they manage to say 3 things in one conversation with no definites.

Now, I’m trying to rest up. Fighting some low grade nausea on and off. Still getting some antibiotics.

Hanging in there until tomorrow….I hope.

The one where I fight Apollo Creed and win

Round 2. Rocky 2. Yo Adrienne.

Our trip to Italy was lovely. It was hot. We were surrounded by good friends. The food was excellent. The gelato hit the spot. My friend’s wedding was absolutely beautiful, everything was gorgeous.

The whole trip was a little bittersweet – knowing that I had to come back to LA and walk down this road again. Also, I felt a deep sense of loss with my friend Ray not being there. But we all shared our hugs and offered our support. And a week away did my mental health a lot of good – I came back with a smile on my face, some jetlag and renewed strength.

I entered the hospital on Wednesday and got my PICC line put in my arm. It is a lot like my portacath from last year but it hangs outside of my right arm and it involves a bit more maintenance. The nurses tell me I’ve got the Rolls Royce of PICC’s. I can’t wait until the ladies check it out.

The PICC allows them to take blood and inject chemo with minimum muss and fuss. I can even sleep through the process, it is so painless and smooth. I’ve got to keep it clean and dry and I’ll be rocking an ace bandage on my arm for the next couple of months to keep it tucked away.

I was awake during the procedure, handled once again by my full time Interventional Radiologist Dr. Loh. He handles any minor surgeries because he knows the in-and-outs of my tumor and how it affects my vascular system. I joked with him that one simple needle biopsy almost a year and a half ago and now we are long term friends. His RN referred to Dr. Loh as “my homeboy”, because I won’t let anyone else touch me. Oh yeah, it was also freaky being able to watch him thread the PICC line into my vena cava on live x-ray monitors above my head. I could see my stent and my tumor and watch them thread the line. Pretty messed up.

There was some confusion when I was in the hospital because my doctor’s orders weren’t in yet for my chemo. And once you are an inpatient, the doctors on the floor take over your immediate care. I never did get a visit from my main oncologist. But I met with the floor doctors and everything is taken care of.

I’m on a regimen of Ifosfamice (Ifex), Vinorelbine (Navelbine) and Gemcitabine (Gemzar). I’m also being given Mesna which will help counteract the affects of the Ifex on my bladder.

I’m not exactly sure why I am getting this particular mix of drugs. I know there are a lot of options available, but, like I mentioned, I never got a visit from my oncologist before beginning treatment. Needless to say, this is something that is going to be remedied in the next few days.

Along with this comes a mix of anti-nausea drugs and lots and lots of hydration. My arms, legs and face are starting to swell a bit from all the hydration. And I’ve only had to pee like 20 times since I started writing this blog post.

I’m keeping communication and visitors to a minimum. I’m really tired and I don’t feel like explaining or entertaining. This is a time for me to get through this first round of chemo and get my rest.

As always, Jen has been a rock, a fighter and a huge supporter. She set up her office in the corner of the room and somehow found the time to bring in my Playstation and some new clothes for me to wear around the hospital.

I’ll be home on Monday. Then something like 3 weeks off.

Thanks for all the love and support.

Forever hanging in here, SD.

Unplugged…with diagnosis

Here’s a quick message to let you know that…

1. I am away on vacation for a week.

2. When I return, I will begin more treatments for my Hodgkin’s Disease. The ABVD and radiation last year didn’t quite get every cell and we have to go to Round 2.

Round 2 consists of a couple rounds of hi-dose chemo, which will take a couple of months. Then they harvest stem cells from my blood. Next, they mega-dose me with chemo to kill all the active Hodgkin’s cells, which also results in destroying my immune system. Finally, they inject me with my own stem cells to rebuild my immune system.

I begin treatment on July 21. A great reason for Jen and I to get away for a week.

I know you must have a million questions. I have a million questions myself.

But for now I am turning off, tuning out and unplugging from all this.

Talk to you soon.

Awards time

I started reading some of my old posts tonight. Remember when cancer was fun? When I’d make fun of my doctors and talk about Miley Cyrus and come up with word games? Then shit got serious. Then I was really tired all the time. Then I had radiation and the hair on my chest fell out in the shape of a heart. Then I got tired of being tired and just wanted to be better. Then I was better. Then I got cancer again. And, I guess, now its time to be funny again. Such is the circle of life.

A lot of people have done a lot of great things for Jen and I these past couple of weeks. I thought it was a good time to give out a couple of awards:

Best Hands – To Dr. Jay Lee. For using VATS (Video-assisted Thoracoscopic Surgery) to remove the tissue for my biopsy and not cutting me open like a watermelon on the 4th of July. He also removed the fluid from around my heart and, I think, gave me a creamy, nougat center. Here’s to you, Dr. Lee, for being a Super Doctor. (Seriously, he won the Super Doctor award for 2009-2010. You can’t make up that kind of stuff.)

Best Food – To Cooper Spellman. For unexpectedly delivering us a giant pan of lasagna one night. Sure, Cooper is only 5 months old and his mom and dad, John and Michelle, claim that they made it. Then how do you explain the sauce on Cooper’s hands? Or was that really sauce…?

Best Catheter Removal – To Sylvia the nurse. Smooth like butter. If only her IV poke was as smooth and she didn’t dig into my arm with a needle like a gold prospector.

Best Combination Pulmonary Function Test While Talking About Fantasy Football – The really cool Korean guy who gave me the test while talking to me about fantasy football. No, sir. A team should not get double points if a player returns a kickoff for a touchdown. However, it does count towards his individual stats as well as special teams points. A debate that will rage for all time. And thanks for the help breathing into a tube.

Best News of the Week – To Dr. Jay Lee. For telling me that I’m cleared to fly. A week in Italy will do me a lot of good. Grazie.

MVP – This week the MVP award goes to my Dad. For making me feel a hell of a lot better after delivering him some really bad news. Thanks.

Unfortunately, with the good comes the bad (see my next post). And so, some awards for sucking:

Worst Bedside Manner – To the surgical intern, who I won’t name. He was creepy, ill-informed and told me they would be cutting into my back when really they were cutting into my side. Thanks for spazzing me out.

Worst Chest Tube Removal – Also, to the surgical intern, who I still won’t name. Who’s bright idea was it to take out my epidural BEFORE removing my chest tube? And when I tell you that I can’t turn over because it hurts really badly…or that I can’t breathe on my side…don’t tell me what a good job I’m doing. Get my nurse and give me a f*cking pillow and shut the hell up.

For all award recipients, please send me a check for $25 to cover printing, shipping and handling costs. A frame costs $40. And if you want me to send you an autographed photo, please send me cool hundy.

Thank all of you for participating. There will be plenty of time to win an award in the months to come. Trust me.

Waiting…

Still waiting for final biopsy results from the doctor.

I have gotten all of your concerned calls and messages and emails. And I thank you. Sorry, I haven’t gotten back to everyone.

I’ve spent my past few days recovering from my surgery. Mostly hopped up on pain pills the first couple of days and short of breath. I have felt dramatically better over the past couple of days and now I mostly have a lingering soreness and minimal chest pain when I take a deep breath. All according to how the doctors told me I would progress.

On a side note: I started this blog as a way to keep in touch with a lot of people at once and also tell the story of what it takes to get through Hodgkin’s Treatment – something that other patients could read.

Now, sometimes, I feel like I’m writing some kind of online short story. That people tune in for ‘updates’ as if they were new chapters in a book. I have a love/hate relationship with this blog right now. I guess, a lot of it comes from the fact that I never thought I’d have to write on it again.

For every blog post I write, Jen and I go through days of happiness, sadness, concern, stress, laughter and anxiety. There are phone calls with family and friends. Emails. Facebook messages. Texts. It is difficult to tell the same story over and over again. Difficult to answer the question “How are you doing?” so many times a day.

I thought by creating a place where I could talk about my treatments would help me put Hodgkin’s in its place. It’s not my life but it is a big part of my life.

Now, looking down the barrel of facing more treatments, I have to not only come to terms with going through more physical trauma but also handling this ever present need to keep my audience updated.

I’m happy that technology gives me a window from which I can tell my story to so many at once. While at the same time, things were better a couple of months ago when I had slipped back into anonymity.

So please, bear with me as I readjust.

Thanks.

This just in – hospital food hasn’t changed in the past year

Hello all. Quick update.

The surgery went pretty well on Wednesday. The doctor was able to go into my side with cameras and remove two good samples – one from near my lung and one from near my heart. The pathologist said that these samples contained enough tissue for them to perform a few tests on. At that point, my surgeon decided not to pursue the much more invasive thoracic surgery and he stopped at getting the two samples. There is still a lot of scar tissue, infection and ‘unusual’ tissue in the samples – we just have to wait and see.

I’ve got an epidural to help with the pain. The surgeon was able to drain the fluid around my heart and I’ve had a chest tube for the past couple of days. Uncomfortable but I can deal.

Most of my pain actually comes from my right shoulder and upper back from my arm being strapped down over my head for the 3 hour procedure. The epidural doesn’t do anything for this pain so the nurses give me the occasional dose of Diloted. They are all about pain management while I’m in the hospital. Most of the time it makes me sleepy and I nod off pretty regularly.

I slept better last night and my strength is slowly coming back. I don’t have a good idea of how long my recovery will take – I’ve got a pretty good sized incision in my right side and a lot of soreness so I think I’ll be out of action for a few weeks.

And then, we have to get the biopsy results – which won’t be until next week. I still don’t have any clear idea if it is an infection or Hodgkin’s or something else. One step at a time.

I should get out of the hospital tomorrow. In the meantime, it is time for World Cup and Gatorade and slow walks around the hallway.

Will see you soon.