I just got home from my post-op follow up with Dr. Scherr where I got some really great news: I am now officially cancer-free.  They took out 43 lymph nodes total, all of which came back negative for metastatic carcinoma. I need to follow up with Dr. Scherr in 3 months for continued monitoring, but as of now I am completely done with treatment!

I also had the 54 staples removed; it was unpleasant but not terribly painful, except for the one troublemaker that they had to call in reinforcements to get out. That said, getting the good news first definitely made this process a little easier!

So, now I just need to focus on recovering from the surgery and hopefully life can get back to normal soon.

So, I had the RPLND surgery last Thursday. I’m home now recovering, but figured my tweets tell the story best.

• On my way to the hospital sporting my @adaptiveblue shirt and @reprisemedia hat. Need @notches boxers (5:26 AM Jun 4th)
• Resting comfortably - the morphine helps. Finally got a room/bed after 5 hrs waiting in recovery on the stretcher. Soooo thirsty but can’t drink yet (8:29 PM Jun 4th)
• Fitful sleeping even with morphine and ambien. Oscillating between discomfort & pain. (2:33 AM Jun 5th)
• Dr Scherr said surgery went well. Will have pathology report next week (2:34 AM Jun 5th)
• According to my doctor, today's gameplan is to walk and to try to fart. If I fart I can start drinking. Go Farts! (7:30 AM Jun 5th )
• The hospital lets you buy cable for 10$/day. They SHOULD allow you to pay more to keep you roommate from using it. I would pay anything not to listen to any more Tele-fucking-Mundo (10:12 AM Jun 8th)
• Sad moment - they took out my epidural, so no more pain button. On the positive side this means the catheter will come out soon too (10:33 AM Jun 8th)
• I am moving on to solid food today - and after 2 Percocets and no food for a week they expect me to set my menu for the next 3 days? WTF (8:20 AM Jun 9th)
• Rumor has it they're letting me out tomorrow, though I'm still not entirely convinced that's a great idea. But it will be nice to get home (9:33 PM Jun 9th)
• I have walked past the burn unit 100x during my stay here and still get very emotional reading the wall of cards to sept 11 victims (12:35 AM Jun 10th)
• When selling you on the benefits of the epidural they don't tell you about the dark side of the pain btn: the catheter (12:47 AM Jun 10th)
• It's kind of trippy listening to my new roommate go through and be told all the things I heard a week ago (9:50 AM Jun 10th)
• ... Especially since I was so drugged up when I first heard it. (10:04 AM Jun 10th)
• I felt like offering my own advice but to paraphrase Office Space, let's pretend I can't hear through the curtain (10:08 AM Jun 10th)
• Discharged from the hospital and en route to Brooklyn with percoset in hand. Can't wait to shower and sleep in my own bed (4:41 PM Jun 10th)
• Three words: "hooray for percoset" (7:14 PM Jun 10th)
• After a week of sponge baths and baby wipes, it felt amazing to take a proper shower. As an added bonus, I used shampoo for the first time in 4 months (9:38 PM Jun 10th)

Each day is a little easier than the last. There’s been less “pain” per se compared to the first operation – getting in and out of bed is a little easier – it’s just a higher level of general discomfort. Each day is a little better than the last. I can even lie on my side now without too much pain.

I have a follow-up appointment with Dr. Scherr on Tuesday at which time I’ll get the pathology report and have the 54 staples removed, some of which can be seen in this photo along with the bruising on my stomach. As you can see, they literally go around the belly button. (I decided to make you click through instead of posting directly in the post for those who are a bit more squeamish. Consider yourself warned!).

Sorry – this update is well overdue.

Finishing Chemo

As I mentioned in the previous update, I had what is hopefully my last day of chemotherapy a little more than a month ago. Chemo is a cumulative thing and it definitely caught up with me in the end. I was sick for the first time the Monday after the final cycle, and it took a full week and a half before I really started to recover. On the whole I felt pretty good after a few days, but I would sometime have periods of time where I would feel as bad as I did during the whole process. I would just hit the proverbial wall and it took about 2 full weeks before I got past that.

In any case, I feel pretty damn good right now. I started going to the gym about 2 weeks ago at full speed (though admittedly that is a bit less after 6 months of virtually no physical activity). And, perhaps most importantly, my hair is starting to grow again. My eyebrows have fully grown back in, my facial hair is growing more consistently, and I have a hairline now.

So, now what?

My latest CT scan showed virtually no reduction in the size of the lymph nodes from the previous scan. 

Basically, at this point, this can mean one of three: 1) there's scar tissue (about 45% chance), 2) there are teratomas (about 40% chance), or 3) there is still viable cancer (about 15% chance). Scar tissue is no big deal. A teratoma is basically a mutation of the cancer cells; though not malignant in and of itself, it must be removed because it can grow and cause problems including turning into late stage muscle cancers. And, obviously, viable cancer cells must be removed.  Since there was virtually no reduction in size after the last two cycles, Dr. Nanus feels it's even less likely that I still have cancer - but, unfortunately, there's no way to tell what is in there without surgery.

So, I’m going in for Retroperitoneal Lymph Node Dissection (RPLND) on June 4th. The procedure itself is pretty intensive, taking about 6 hours. As one site puts it:

In a nut shell, the RPLND involves an incision from just below your sternum to below the belly button (but they do go around it!). Your intestines and associated organs are literally lifted out of the way, nerves are identified and hopefully moved out of the way, and then the surgeons remove all the lymph nodes that were connected to the testicle containing the tumor.

The surgery is "complicated and delicate" and "few doctors do more than a couple of these surgeries a year". I am very fortunate to have a surgeon like Dr. Scherr who is one of the leading surgeons in this area and and does several of these per month. In other words, I’m in very good hands.

After surgery, I will be in the hospital for 5-7 nights. I've been told that the recovery is actually less painful than the orchiectomy since no muscle is cut; we'll see. But, because it's such a delicate procedure, there are a lot of potential complications, so they want to keep a close eye on me the first week. I will be on a liquid diet that first week - one of the side effects is "temporary paralysis" of the intestines and bowels. (ounds like fun). These lymph nodes are also apparently responsible for processing lipids, so I will be on a non-fat (or, at least, super-super-low-fat) diet for 6 weeks after the hospital stay.

I was told that if I eat fatty foods, it can cause the seals on the removed nodes to burst at which point “I will need to have a drain installed” to remove the lymphatic fluid. Suffice it to say that I don't need too much detail on what “having a drain installed” means to know that I won't be cheating on this diet.

If anyone wants to visit, I’d love to see you. I’ll be at NYPH (Weill-Cornell) on 68th and York, though I'm not sure yet what floor or room. I will try to post more details when I know them depending on how much connectivity (and coherence) I have. I'll try to let you know when I've been playing with the pain button, because that will surely be the most entertaining time to see me.

Well, assuming no further complications, today is my last day of chemotherapy.

It couldn't have come at better time – the treatment has definitely been taking its toll, as you can see. For those of you who wanted evidence of my baldness, here you go. This week has been tough so far, but at least there is a light at the end of the tunnel. The symptoms that usually hit me at the end of the cycle started much earlier in the week. My appetite has dropped to next to nothing – I have a light breakfast in the morning and pretty much don't eat for the rest of the day. I spend most of the day sleeping -  I nap through treatment and sleep pretty much from the time I get home at 2-3pm through 6:30 the next morning.

Beyond that, I'm definitely looking forward to putting this chapter of my treatment behind me. I know there's still a big hurdle in front of me with the pending surgery, but the chemo definitely weighs on you both mentally and physically. It will be nice to actually be able think straight again, and be able to go out in public without worrying about a depleted immune system.

I finished my third cycle last week. Again, things are getting marginally worse each cycle. My doctor put me on a little more aggressive anti-nausea regimen as we get into the later cycles – still no sickness, but my appetite was non-existent late in the treatment cycle and into the next weekend.

On the blood count front, my levels again dipped pretty low on Mon (0.7 ANC) but again bounced back later in the week (5.5 ANC). Tests from my follow-up visit this past week show the same pattern, so I can expect another dip into my last cycle – so while I still need to be careful, it's not something that will affect my treatment schedule (nor do I need I Neulasta).

As I mentioned, I also had a CT scan prior to the third cycle. According to the report, "the previously described, minimally enlarged, left periaortic lymph node appears smaller on today's exam, currently measuring 1.5 x 0.8 cm, previously measuring 2.0 x 1.1 cm. Previously described additional shotty retroperitoneal lymph nodes are unchanged. No new lymph nodes are identified in the abdomen or pelvis. No evidence of metastasis throughout the chest". 

One thing my oncologist mentioned is that the actual reduction in the cancer cells is probably larger than those numbers suggest. The CT scan only shows the size of the lymph nodes and doesn't differentiate between the type of cells present. What's likely, I'm told, is that some of the cancer cells have turned to teratomas. Teratomas are mature germ cells which can grow; they are not malignant by themselves but can turn into late-stage recurences particularly as a muscle cancer.

Ultimately, this means that the chemotherapy is working, but I will definitely need the RPLND surgery when it's all over. (There was only a very small possibility I wouldn't, but I was still holding on to that chance!). There's also a very, very small chance I may need an additional two cycles of chemo after the surgery, but given the reductions my oncologist said that's unlikely – but we won't know for sure until after the surgery.

Other than that, things are moving forward. I start my fourth and final cycle the day after Easter, and then will probably have the surgery sometime in mid-late May or early June.

I finished my second cycle a week ago today. The second cycle was, as expected, a little tougher than the first, but not significantly so. I definitely found that I slept more during the treatment week. Still no real "sickness", but discomfort levels are generally higher than they were last time.

During the second week of treatment, my low white blood count and neutrophil levels rebounded very well so we opted not to take the Neulasta shot for now. My WBC went from 2.9 to 8.6 and my NE went from 0.8 to 7.3. I don't have the exact numbers from my blood work yesterday in front of me, but they were down to levels that are similar to the first cycle. In general, the counts will bottom out about 10-14 days after the cycle so we're expecting them to dip near where they were last time. So, I still need to be careful and we're obviously going to keep monitoring but the good news is that my body does seem to be bouncing back.

I am having a CT scan next week to see how the treatment is progressing and, hopefully, show a reduced mass in the lymph nodes.

I also want to thank everyone who has sent wishes, cards, books, hats, foodstuffs, etc. I owe a lot of people calls and I will get to them – but I do want everyone to know in the interim that I appreciate the support very much.

As those of you in the NY area know, we got a fair bit of snow yesterday. Roads were bad, and in general being out in Bay Ridge there's a lot of propensity to go wrong. When I take mass transit now, I was recommended to take the bus and avoid the more crowded subways.

It was one of those days in the past that I might have called in "sick" and worked from home – and all I could do was laugh at the irony that I couldn't stay home yesterday… because I was sick.

In any case, I started the second cycle yesterday. I was tired yesterday but part of that has been my sleeping schedule. The rooms are tight but the nursing staff is wonderful – Edna is taking great care of me and makes the whole process much easier. I also found the much larger and heavier Notches laptop was actually easier to work with for whatever reason in the chairs. It just sort of balances better because it's wider.

The only complication I have right now is that my neutrophil level is low (0.8 when normal ranges are 1.5 to 8.0). My overall white blood count is on the lower side but within acceptable range. Neutropenia is a common and potentially serious side effect that affects about half of chemo patients. A neutrophil is a mature white blood cell that are the real "fighters" responsible for protecting the body from disease and infection.

My medical staff felt because my overall WBC is acceptable, it was better not to delay this treatment. Instead, I will just get a shot of Neulasta next Mon which will help bring those levels up again quicker than normal. This means I need to be very careful, avoiding crowds, raw foods, kids with recent vaccinations and people with colds.

Otherwise, I feel fine and things are moving forward. After this week, I will be halfway through my chemotherapy regimen. I guess time really flies when you're having a good time.

I started shedding my body hair last night, and I can only imagine that the hair on my head is not far behind. My oncologist said hair loss would begin right before the second cycle, so I figure that it really kick in over the next few days.

I'm not going to lie – even when you think you're mentally prepared for it, it kind of freaks you out when your hair comes out in clumps.

Otherwise, things are going well – I'm just trying to get physically and mentally prepared for the second cycle which begins next week. And I'm hoping to try to renew my license today, so at least I can get a picture where I have some hair.

So, I finished my first cycle of chemotherapy a week ago. The weekend afterwards was pretty rough, but otherwise things are going well.

The side effects have been fairly minimal so far. The weekend immediately following the cycle was fairly rough – it kind of felt like I had the flu. I was very tired and achy and didn't really want to get out of bed or eat anything. I wasn't sick in the sense that I threw up, but rather queasy in the sense that I wish I did. I've found that feeling even worse on an empty stomach, so I've taken to eating many smaller meals throughout the day.

The worst of it cleared by the following Tuesday morning. Now I'm just generally achy and get tired easily, but otherwise things are good. My oncologist told me that it's a cumulative effect, so by the third and fourth cycle the recovery window may be slightly longer. My platelet and white blood count remained at or near good levels through the first cycle, which is a positive thing. I need to be careful but at least I can be productive and get work done. Of course, working for myself gives me the flexibility that I need in terms of working when and how I am capable.