Register for the bone marrow registry

You could save the life of a little boy, a mother who wants to spend more time with her kids, a father who supports his family, a teenager with their whole lives ahead of them, or a senior with extraordinary tenacity.

It’s painless for the donor. And it is important.

National Marrow Donor Program

Day +9*

*I can’t believe it has been 3 years and 2 months and I’m still writing this blog. Let alone that the days of my life have been restarted not once, but twice. So here I am again at +9 days after my transplant. Sigh.

The chemo was mild, the transplant was uneventful and both mine and Jen’s birthdays whipped past us as we were largely cooped up in my hospital room.

After all the different (and difficult) protocols that I’ve been through, it was hard to believe the doctors when they told me how mild this treatment would be. But they were right. Except for some stomach issues and testing for viruses and bacteria (all negative), I’ve been a perfect patient. I never broke a fever. My ANC count never dropped below 1, so I never truly got neutropenic. I spent a lot of time out of bed and wandering around NIH.

The care here has been second to none. They don’t burden the patient with a lot of unnecessary restrictions and try to give them as much independence as possible. I’ve been able to eat what I want (within the common sense guidelines of  being post-transplant). I’ve been able to leave my room and even go outside for walks and some fresh air. Yes, I spent a lot of the time snoozing in my room or just resting. But staying in good shape enough to get up and go out has been extremely beneficial.

The doctors and nurses listen to every complaint and follow up very quickly. Pain in the back – walk yourself down to x-ray. Runny nose – let’s take a nasal wash and check for viruses. Everything happens extremely quickly and everyone is in the loop. I very rarely had to explain my story.

NIH also provides “whole body care” which includes a variety of supportive therapies. Therapy dogs, acupuncture, massage. A library. Musicians play every day in the main atrium. As a patient, you really expect to leave here better than when you came in.

As my brother succinctly put it: “When you put aside the insurance companies and lawyers, you can get on with the business of healing people.” And that’s exactly how it feels here.

My next steps are baby steps. Once I’m released, I have to return to the hospital every day for blood tests. I’m getting blood and platelet infusions as needed. Although I’m not a ‘boy in a bubble’, I have to take many precautions against catching a cold or getting sick. Masks and gloves when in crowded public places. Hand washing like I’ve never hand washed before. If I spike a fever above 100, I’m back in the hospital. And there’s always risks of Picc line infections or CMV or other nasty bugs that lurk inside me.

Then there is the GVHD (graft v. host disease). The sun is my enemy – it can really aggravate GVHD. I have to wear long pants, long sleeves, hat and sunscreen in the sun. I’m closely watched for any signs of GVHD so they can get a grip on it before it gets too bad.

It’s all do-able. And I’m in good shape. The goal is to stay this way.

Stem cell here we come

Hello all.

The reason I haven’t written in awhile is not because things have been so bad…in a way, it is because I have been feeling surprisingly good. My 3rd chemo was a bitch – as always. But with the proper medicines and treatment, it cleared up in the normal amount of time. The fatigue lingers for awhile. And when one part of my body feels better (sore throat) another part feels worse (Neupogen pain). But I roll with it pretty well.

The best thing going on is grad school. Besides the fact that I am very much interested in what I am studying, I also get to be involved with the undergrad students right away. I find the whole experience very uplifting and it has helped me put my whole cancer treatment into perspective. Right now, I’ve got two things to concentrate on: getting better and getting an education. Its a powerful set of motivators.

Although I am back in the hospital this weekend for an unexpected 4th chemo, I am approved to begin the stem cell treatment around October 11th. This 4th chemo is preventative to make sure I stay in remission during the time it took to get insurance approval and scheduling set for my stem cell. This sucks that I have to be knocked down one more time…but means to an end, I guess.

I also took a long, long walk around the hospital today. It is amazing the places you can go with an IV and not get stopped:

Picking up some extra hours working in receiving

The tentative schedule for my stem cell treatment is:

1. Start taking high dose Neupogen right away – this will lead to a lot of bone pain and discomfort but also get my bones pumping away fresh stem cells
2. Meet with doctors and nurses to sign consent and get my veins checked on October 11th. If I need a catheter, my old friend Dr. Loh is going to help decide whether I can get one in my neck or if they have to go into through my groin (much more uncomfortable)
3. Stem cell harvesting will begin as soon as my counts are up – hopefully around the 13th.
4. I could be admitted to the hospital as soon as the 21st.
5. I spend a week getting high-dose BEAM chemo, then a day of rest.
6. I get my stem cells put back into me, which is anti-climatic. They refer to this as Day 0 (some people look at it as their new birthday).
7. I get 2 weeks of semi-isolation and monitoring at the hospital. This is going to be the toughest time – I’ll get all my favorite chemo side effects plus I’ll be exhausted from having my immune system wiped out. I’ll be very susceptible to infections, fevers and viruses.
8. They let me out when my counts go back up and I’m under 24 hour care for the next couple of weeks (that means someone has to be with me 24 hours).

(Edit: At my brother-in-law’s urging, I think it is a good idea to try to explain what this process will do for me….thank, J Charles Berry.)

Right now, I am in remission. But based on what happened to me last year (I was in remission but the Hodgkin’s came back), this stem cell treatment actually has more to do with the BEAM chemo than with the stem cells. The BEAM chemo should wipe out every last damned cancer cell in my body – it is more intense chemo than I’ve ever had before. But doing such damage, it also destroys my bone marrow and my body’s ability to make new cells. So, in order for my cancer to be destroyed by the high dose chemo, the doctor’s need to harvest my stem cells and then put them back into body where they will find their way back into my bone marrow and start generating new cells within 8-14 days after they are infused. The stem cells actually do nothing to fight the cancer. The stem cell transfusion process is in place because, without it, I would not be able to generate new blood cells.

Here’s a bit more information about it: http://www.curehodgkins.com/hodgkins_resources/transplant.html

This also means that my body will be severely immuno-compromised while my stem cells get back to work. All of my natural anti-bodies will be wiped out. It will take months for my immune system to recover, and during that time I have to be incredibly careful about germs and bacteria – food, kids, doorknobs, hugging. All in all, I should get through it fine, I’ve held up well before.

Sure, I’m scared. Will the worst part be that I get really sick? Or is it that I’ll be really sick and stuck in the hospital? Being sick at home is a lot more comforting – and that’s my goal. To make it home as quickly as possible.

I’ll let you know more as I know more. But for now, things are moving along nicely. Glad to be in remission and taking these next steps.

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.

9.8 Granulocytes…ah ah ah…

Dr. Klein

We went to see Dr. Klein today. My blood tests are better than normal. I am a white blood cell count making factory right now. Thanks Nueopogen! All that pain was worth it, I guess.

For those of you keeping score at home, here are my counts (the numbers on the right are the ‘normal’ range so you can see I’m above normal on some counts):

WBC          12.4        4.1 – 10.9

LYM          1.8          0.6 – 4.1

MID          0.9          0.0 – 1.8

GRAN       9.8          2.0 – 7.8

Today I feel like I played a game of beach volleyball insted of a game of tackle football. I had so much pain in my hips and lower back that I was up at 4 am. And if you’re ever up at 4 am on a Thursday morning and you want to know what’s on TV, the answer is: nothing. Don’t bother. Read a book. You can always buy a Shamwow later. Go back to bed.

The other thing I had to deal with today was telling Dr. Klein about how the UCLA Cancer Center completely screwed up everything in one week. On Monday, the nurse didn’t have me on her schedule for my shot and we had a 45 minute wait. Then she told me they might not even have the Neupogen because no one had ordered my medicine and they had to scramble to even get my prescription filled – even though it was Monday and the doctor had ordered it last Thursday. Not to mention the 2+ hours Jen had to spend on the phone to get the insurance approval and get the pharmacy to ship out the medicine after they had already done all their shipments for the day.

I have a favorite saying: If I did my job like you do your job, I wouldn’t have a job.

Sure it’s a bit snotty, but if I don’t do my job correctly then the work of over a hundred people and tens of thousands of dollars is gone forever. If a nurse (or nurses and receptionists) don’t do their job at the UCLA Cancer Center, then sick people get worse.

It’s one thing to have a bump in the road, an isolated problem. It is another thing to run into the brick wall of having no less than 3 people completely screw up and stress out a cancer patient. If the UCLA Cancer Center was a Jiffy Lube, I would not bring my car to them.

So, I am very close to switching my care to the UCLA Lymphoma Center in Westwood. Not because I don’t like my doctor (and isn’t he adorable in that little doctor outfit and glasses?) but because I was misdiagnosed for 6 months and I don’t trust any medical personnel right now.

Oh yeah, and my hair is starting to fall out. Sigh.

But I’m healthy and getting better every day.

At least I don’t have to take the bone-shaking Neupogen shots this week. Maybe I should be more like Dr. Klein and learn to relax a little bit?

Dr. Klein says "Yee-ha!"

Sweet sweet marrow

That will be me in about 15 minutes – but my hair is not in a pony tail and I am not wearing an adorable Abercrombie and Fitch outfit.

However, I will be out on whatever pain killers they can give me.

The word on the street is that bone marrow biopsy is a bit…um…uncomfortable. Now, some people say it is no big deal. And those people handle the problems and paperwork for commercial production companies and are up to their knees in other people’s problems all day. Me? I’m a little more thin skinned.

Baby steps baby steps. More information coming in as we speak.

Gotta go figure out if I have all that extra back fat like the girl in the little picture above. I hope not. How embarrassing – what are those? Demons?

So long sweet marrow

Not too bad with a little morphine, some Adavan and Dr. Hart’s soft hands rubbing the back of my hips. Oooh Dr. Hart. Like a poor man’s Noah Wylie from ER.

Actually, it felt like I hit a log on my ass at full speed while snowboarding. For about 5 minutes.

But I got a 10/10 for Aspiration. Nice.

Off to the lab with you! Tomorrow, Pet Scan at 9am. Then we will know the extent of the damage. Chemo might start as soon as Tuesday afternoon.

Oh, and the doctor said I am clear of lower back fat demons. So that’s a relief.