Tag Archives: Steroids

Day +60

I’ve been busy.

The past 60+ days have been a roller coaster ride, for sure. So much was changing every day, so much time spent back and forth to NIH, so much time spent in the hospital, so much time resting. I’m not sure how to sum it all up (and still be profound and funny).

The benchmarks for my treatment are day 30/60/100. On these days, I get PET/CT and we evaluate my progress. I had my day 60 scans this past week and my tumor is stable – no new growth. Which is great news. We can’t evaluate whether the tumor itself is much ‘colder’ or less active than it has been in the past – although the scan seems to indicate that it should be. At this stage, still so close to my transplant, the important thing is that I’ve been off chemo for months now and the tumor isn’t growing.

These scans serve as benchmarks and data points for my treatment. Days 30/60/100 are arbitrary days where they collect information about how I’m doing. The actual time frame for showing results and achieving remission could take months or years. However, my new immune system is definitely fired up and I feel extremely confident that its doing what it is supposed to be doing.

A big indicator is that I developed a moderate level of Graft vs. Host Disease on my skin and in my guts (GI tract). The GVHD put me in the hospital for 2 weeks as I had to stop eating completely, go on bunch of support drugs, and go under the careful watch of my NIH team. Currently, I’m on a treatment plan of very high dose steroids (140mg/day of Prednisone) and Tacrolimus as an immuno-suppressant. It is working well and things are improving. But I can’t stay on this regimen for too long as these drugs inhibit the ability of my new immune system to battle my cancer.

Basically, it is a balancing act between not letting the new immune system run wild and overrun me with GVHD but also letting it do its work. The process takes as long as it takes to get my meds at the best level for this to work.

In the meantime, I’ve spent 35 days as inpatient through the last 60 days, including transplant days and 2 stints as inpatient. I can’t even begin to describe all of the daily ups-and-downs that I went through during these times. Complications with my PICC line/catheter kept me going back and forth to Interventional Radiology. Blood pressure spikes and drops. Lots of scans when there was any sign of possible infections or complications (none so far!). IV drugs. Oral drugs. Anti-fungals. Anti-virals. Steroids. Stomach medicine. The list goes on.

But this isn’t a complaint – more like a big thank you.

The care at NIH is far superior to anything I could have imagined. Part of it is being under a clinical trial – the rules are strict and they keep a very close eye on you. But NIH is so much more than that. The doctors really care about my progress because they care about their research and making people better. They earn less than private doctors, but give more attention to the patient. I can text my oncologist with questions. He’s got my back when I have personal run-ins with other doctors or staff. He’s protective and caring. And this attitude spreads through the entire team – from the nurse practitioners through the administration to the floor nurses. I’m surrounded by amazing people – people who know my case, know me personally, and do everything they can to accommodate me while pushing for the best results possible.

There is no insurance. There is no waiting. I’ve seen the dentist, ophthalmologist, interventional radiology, nutritionist, bronchial specialists, infectious disease doctor  and more. My drug regimen keeps changing but we never have to pay for drugs. There is also a huge support system in place that provides acupuncture, massage and various therapies.

We are just blown away. I feel safe. We feel well taken care of. If I have to go inpatient, I know it is for the best reasons. And even if I’m bored or uncomfortable, if they tell me to stay inpatient then I listen. I’m not in any hurry to put myself at risk because I don’t want to be in the hospital – I let them make their evaluations and take their time.

This is a one way road. As it was explained to me – after an allo transplant, my baseline is changed forever. I may have to deal with chronic GVHD – sensitivity to the sun, dry eyes and mouth, skin rashes, or other things. It could pop up soon or it could be months away. I’m different inside. Forever.

But NIH will always follow me. I’m going to have to do some shuttling back and forth for awhile, but Bethesda is a nice town and I have a pretty good support system close by.

For now, I’m riding out the GVHD and getting my diet back on track. Treating the skin. Resting but I have enough freedom to make small trips out. The fatigue is impressive, to say the least. But I pace myself and I’m working to get my strength back.

This has been quite a journey. I was very sick when I arrived here while recovering from my IGEV chemo. Jen and I have crossed many bridges and there”s many more to come.

But I’ve got confidence and patience.

And I’ll be in touch.

Words from the big chair #2

Dr. Klein and the nurse had bad news about my white blood cell count. But they delivered it in a terrific manner.

Dr. Klein and the nurse told me my white blood cell count was los again. But they delivered the news iin a terrific manner.

Hello again from the chemo throne.

I am still getting the chemo through an IV in my arm. They can’t consider a port in my chest until after they take a look at the blood clots again. And they can’t take a look at the blood clots until after my 4th treatment. So, its all about my arm veins for another couple of weeks.

The nurse who gave me the IV was an Army vet and he gave me a smooth stick under pressure – virtually painless. Painless needle sticks have become very important to me. Nurses trained to do triage while getting attacked by the Taliban = good IV.

But some bad news – I have to go back on the Neupogen. My white blood cell counts are low again. Which sucks.  I’m not sure if this is a Neupogen roller coaster ride that I will be on the whole time. I’m hoping that some tweaks in my nutritional plan will help my WBC stay up. Eating less sugar and more natural stuff will be a small price to pay compared to the bone pain I get from the Neupogen.

In other news, the Benedryl is kicking in and I’m going into my loopy place. It hits me pretty hard and pretty quick. Takes the edge off of everything.

I’ve got 3 ‘pushes’ then the drip.

As always, the “Red Devil” (Adryomyacin) goes in first. The nurse tells me that this one is harsh. Can cause serious nausea. But it is a necessary chemical for me to get – very effective and sort of a ‘standard issue’ chemo drug. This is the one that is also hardest on the veins and is probably causing the phlebitis in my arms (blood clots). Little bastard. Pushpushpush.

Vinblastine next. Pushpushpush.

Then Bleomyacin, which is rough on my lungs. Looks like I missed my window to take up pipe smoking. Pushpushpush.

And finally the Dacarbazine, which is my least favorite because it causes me so much pain in my arm and hand. Drip…drip…drip…

Did you know that some chemo chemicals are purple? Or aqua? Me neither. They turn your pee different colors. I’m used to mine being orange. Turquoise would be interesting.

Did you know they had free granola bars while you’re getting treatment? Mmmm…

One of these is full of nuts. The other is a granola bar.

What do Miley Cyrus and a granola bar have in common? I have no idea. I found the photo this way.

I am both amazed and depressed that this clinic is so ‘normal’. People come in, get their chemo, read magazines, socialize, nurses come and go and it feels a lot like a clubhouse to me. Part of the special treatment you get for being a member of the Cancer Club, I guess.

I find it a little depressing because this is a necessary part of life for so many people. Cancer treatment goes from something which is shocking and life changing to something along the lines of routine.

Beep beep beep. My IV keeps stopping.

Drip drip drip. The nurse fixes it.

Almost done. And a celebrity sighting – much to my mom and aunt’s glee – Bob Newhart. He’s older. His wife is here for chemo.

Quote of the day, which makes coming in for chemo worth it. My mom just said:

"He looks just like himself."

"He looks just like himself."

Classic.

Home again. Shots for myself tomorrow.  Rest. Sleep.

I’ll probably dream tonight that I am married to Susanne Pleschette, own a bed and breakfast and 3 guys named Daryl 2 guys named Daryl and 1 guy named Larry live next door.

Thanks for tuning in.

Words from the big chair

Big chair photo

Check the hair

Sitting in the big chair. Dopey on Benadryl. The Ativan should kick in soon. Trying to count the number of pharmaceuticals going into my body right now. Let’s count together:

  1. Lorazepam (Ativan)  – makes me calm.
  2. Benadryl – to supress allergic reactions. Also makes me sleepy
  3. Acetaminophen – fancy name for aspirin
  4. Saline – 150mg – gotta keep the ole’ kidney’s clean
  5. Aloxi – anti-nausea, so i don’t toss my cookies.
  6. Decadron – steroids, makes dink more homers
  7. viagra – puts a party in my pants!
  8. ABVD – the big four

Ok, they are not giving me viagra. But i asked.

Everyone here is very nice. The facility is clean and bright. They have gingersnaps. I feel like I’m backstage in the VIP room of the Cancer Club. Which is a lot like getting backstage at the Whiskey A Go-Go, except the Rolling Stones have never played the UCLA Cancer Treatment Center (unless I get my wish from the Make-A-Wish Foundation).

I am mostly loopy and nervous. My first chemo treatment in the hospital was a borderline nightmare with the long, long wait and multiple delays. Getting pumped ful of an unknown chemical which makes my hand burn at 11:30pm would probably turn most people off.

But it is very different experience to come to a clinic where all they do is chemo treatments. They are very understanding and patient (so far). They look at the chart and have a plan the entire way through. And did I mention the gingersnaps?

After Ativan and Benadryl this is what my clinic feels like

After Ativan and Benadryl this is what my clinic feels like

And in goes the Red Devil first. Adryomyacin. Turns my pee orange. Given first because it could cause some side effects or discomfort. Let the games begin.

I got the devil in my veins!

I got the devil in my veins!

One down. 3 more to go.

Bleomyacin – This makes my hands go numb.

Vinblastine now. This chemical is made from a plant that grows in Madagascar. How about that.

Dacarbazine – This is the one I have a problem with. It burned my hand last time and I have to be on a slow drip to deal with it. This is mostly a side-effect of using the veins in my arm instead of having a port in my chest. The nurse is trying different things to make this less unpleasant (tingling in my hands, mild pain in IV area).

Good attention from the nurse. Time for more gingersnaps.

Oh, and my white blood cell counts are a little low – White Blood Cells @ 2.7 (4.1-10.9) and Granulocytes were at 1.4.

I’ll let my mom Google those terms and she if she can come up with a diagnosis…

In the meantime, I’ll be getting Neupogen shots which will raise my white blood cells. I want Jen to give me the shot at home – really make her uncomfortable. But we will have our neighbors the nurses do it for us. Always a good idea to have a couple nurses around for these things. They are small needles – like insulin for diabetes.

The Neupogen works with my bones where they make white  blood cells. It will help keep me healthy but could cause bone pain. Everything has its price.

All done. The IV goes beep beep. I feel just like my car after an oil change at Jiffy Lube.

I'd rather be on the beach with this guy.

I'd rather be on the beach with this guy.

Some prelim info

Day 5. Running low on supplies. Might have to eat Johnson’s leg. Can’t start drinking sea water. Can’t watch any more Telemundo. Started reading Maxim. Oh God.


Things are good. Hospital is great. Nurses are great. The doctors who know what’s going with me are great. I think the staff still thinks I’m funny….but I also think they kinda wish I was just another comatose person in a hospital bed so they didn’t have to pretend to laugh at my jokes.


Initial diagnosis is Hodgkin’s Lymphoma – the most treatable kind of cancer there is. Not sure of the stage – need more tests. I’ll get more info on Monday and begin treatment soon.

Definition of Hodgkin lymphoma: A cancer of the immune system that is marked by the presence of a type of cell called the Reed-Sternberg cell. The two major types of Hodgkin lymphoma are classical Hodgkin lymphoma and nodular lymphocyte-predominant Hodgkin lymphoma. Symptoms include the painless enlargement of lymph nodes, spleen, or other immune tissue. Other symptoms include fever, weight loss, fatigue, or night sweats. Also called Hodgkin disease.

FYI – that is an exact list of my symptoms over the past 5 months. Kinda figured some doctor may have noticed it earlier. Guess not.

As the nurse says – chemo will be 5 months of suck. I’ll mostly be outpatient but have to be in the hospital through the first treatment.

I’ve also got other side conditions. The vein from my head and arms is almost completely cut off from my heart and I’ve got some blood clots to deal with. My heart and organs are clear. I’ve got some breathing restrictions – so I won’t be able to participate in this year’s company sack race. But treating the lymphoma should cause all these other things to clear up. And then my face will go back to handsome skinny Steve instead of John Lovitz Alec Baldwin sized Steve.

I’m back on steroids, which I was taking for the ‘sinus infection’ and they cause me to look and feel much better than I do. Ironically, steroids are a very early treatment for Hodgkin’s and that’s why I felt so great when I was getting them for my sinuses. A red herring, indeed. So I look and sound better than I am thanks to Roid Rage.

Probably more definite info tomorrow. Until then, the Hoochy Hoochy Sunday Morning Show is on Telemundo….