Die Cancer Die

We've moved....

2009-08-19T12:46:00.001-04:00

You can bookmark this one:

http://diecancerdie.wordpress.com

Wordpress is a bit more design oriented with a more of an active development lifecycle. This blog will remain here, but all of the posts, comments and other content from it have been imported to the new blog. NO new posts will be added here.

Thanks,

Ted

Thank You, Thank You, Thank You

2009-08-13T23:28:00.006-04:00

It's been a blazing fast five weeks since I got the all clear from Dr. Motzer. Everything that had been put on hold for this cancer battle roared back to the foreground. Work, socializing, normal exercise and activity...they all returned to center stage. On the other hand, cancer stuff (like this blog) were neglected almost immediately.

Not surprisingly, the question I hear the most often is: "how are you feeling?" The answer is that I feel great! My hair is finally back, and I only have one niggling remaining symptom. Otherwise my energy is more or less normal, my fitness level has improved, and I even got some sun. It is/was a big shift going back to work after months off, but it was nice to focus on something else besides my health.

But enough about me. This post is really about all of you.

I really don't know the words that can express how important all of you were in helping me maintain the right attitude during this whole thing. It's just something you have to experience to truly understand, although I certainly don't wish it on anyone. But let me just say this, it is of critical importance and you all delivered it in bountiful quantities.

A few things in particular amazed me. For example, many of you let us know we were in your thoughts and prayers. But not stopping there, many of you mobilized your own personal support networks to think about us and pray for me on your behalf, creating an almost viral and exponentially growing population of supporters. That's just a powerful feeling to think about; such a large number of united voices working on your behalf. These thoughts absolutely entered my mind during some of the darkest and most difficult times of my treatment.

I do want to mention (in no particular order) just a few more examples that I haven't blogged about before. (I won't be mentioning Renee. As I've tried to say in other posts, words really can't describe her contribution to this whole effort. I simply would not have survived without her.)

Carrie; your gift was awesome. It was useful, creative, personal, beautifully presented, unique, generous. I really felt that you knew me deeply and cared deeply.
Rachael; you didn't let the distance slow you down one bit. You did a gazillion things; each one with such care and kindness, but I especially valued the trip you guys made back east to spend at home with us. It was such a lift right when I was in the thick of it.
Dad; you really threaded the needle each time we were together or spoke; being strong when I needed you to be strong, kind when I needed kindness and provided normality and distraction when I needed that. You just knew what I needed better then I myself did. Amazing.
Dave Green; perhaps you're surprised to be mentioned here, but after that worst first week, with chemo, the family stomach bug, and all the other crap, very early on April 11th I checked Facebook. You had posted a clip of "here comes the sun" in response to my status of the night before. I played it and wept like a baby. Deep, cathartic tears alone in my kitchen where I sit again now. At the end of that song the sun rose, literally, and a turning point was reached. From that moment on, my family all started walking out of the dark woods, instead of deeper in. That song is forever representative of that moment, and perfectly so.
Emi; you made sure to come and see the first time I had cancer and I was miserable from my surgery and then you brought everyone here again the second time around. That and your gift of just the right words whenever I needed them, which was often.
Mom; you consistently put me first even though you had to be suffering more then you burdened me with during this whole experience. As a dad myself I can guess a bit but I know that wasn't easy.
So many came to celebrate, with short notice, in the middle of the busy summer when I got the all clear; that was awesome too.

There are a million more examples, small and large that I could share. When I see any of you, I will be telling you how you personally impacted me, because you all did.

My feeling is that I survived because I have more work to do. I consider part of that work is to rebroadcast to others all the kindness conveyed onto me during the last five months. When I do that, it will be in your honor, for all the support given.

A note on this blog; I will be posting the results of my surveillance for at least for the next two years, but that means posts will be approximately monthly.

I am also changing blog providers. In fact this blog is currently mirrored and in beta at http://diecancerdie.wordpress.com

So please stop by from time to time, but there is certainly no need to check Die Cancer Die more often then that.

(Also, if you're a twittering type, I have been twittering occasionally since mid-2007 but will be doing so more actively now, on my new account: http://twitter.com/neigere .

I will be following more then tweeting but that's all the more reason to let me know you're on twitter.)

Remission Mission

2009-07-07T17:49:00.004-04:00

It's been a few days since I found out my tumor was gone. I returned to work yesterday; a big transition from the life I had gotten used to. It was a big transition for Renee too. We had become an efficient family unit. When I wasn't having treatment and I was feeling decent, we took turns with the daily tasks, a well oiled nuclear family unit.

The news that I am in remission continues to sink it slowly. I will never be return to my pre-cancer life. This seems like an obvious statement but it is something I think I did after my initial diagnosis and surgery. At that time I "only" had a 15% chance of recurrence and in my mind, body and psyche I was done with cancer. Of course this was only to find out a year later that I was part of that unlucky 15%. That mental state made my second diagnosis as shocking as the first. So, as a result, I'm taking this "all clear" message with the proverbial grain of salt. I'll really feel relieved in two years, after which the chance of recurrence lowers to close that of the rest of the population. (The most likely location of a third recurrence is unknown, so it's really like the rest of the population.)

In addition to this mental state, I will also have a PET scan and CT in October. This is to confirm that the changes in my armpit and neck lymph nodes that showed in the CT scan have resolved as expected. The conclusion is that those lymph nodes were irritated by the chemo, so they'll be looking for those to have diminished. (It makes sense because the lymph nodes play a key role in the human immune system, and chemo has a major immuno-suppressive effect.)

In the short term, I still have a handful of small but annoying remaining side effects. The most apparent is my shortness of breath and lightheadedness. For example, after I go up a single flight of stairs I have to stop and lean on something as my heart goes into overtime. Or after sitting for a long time I stand up and stretch, I get an intense head rush where I feel like I'm going to lose my balance and usually grab onto something.

Both of these can be explained by my shortage of red blood cells, which carry oxygen from the lungs throughout the circulatory system. Less RBCs, less oxygen to the brain and muscles. In a couple weeks my bone marrow should have reasonably replenished my RBCs, but it'll be three or four months before I'm at my normal pre-chemo counts.

It's amazing how life returns to normal during the minute-by-minute rush. But it's during the rare quiet times that I'm reflective of the experience. Ironically I'm expecting some depression sometimes in the next few weeks or months, as I felt a couple of months after my initial diagnosis. We'll see.

I also want to share a link that some of you have sent to me. There's some truth to it.

http://www.nytimes.com/2009/06/30/health/30case.html

Regarding this blog, I have a few more posts in me. I have a few people to thank ;-) Stay tuned for a bit more.

ALL CLEAR

2009-07-02T15:44:00.002-04:00

Dr. Motzer says my scan results are what you'd hope to see, and no surgery or further chemo is required.

He recommended another ct/pet is 3-4 months for the armpit but felt the chemo just irritated the lymph nodes.

More later....

(Posted from my mobile phone)

Big Day

2009-07-02T15:16:00.003-04:00

Lymph node is now 0.8 cm by 0.8 cm (1.0 cm is normal) with no abnormal sugar uptake. Previously the tumor was absorbing 6X what normal tissue requires, to fuel its growth. (All this info is only from the ct and pet report. We haven't seen motzer). I did have some enlarged lymph nodes in my neck and armpit, but they don't look cancerous. So far good news but we're waiting for motzer's opinion.

(Posted from my mobile phone)

2009-07-02T13:49:00.001-04:00

Waiting now in an exam room. Suddenly a bit nervous.

(Posted from my mobile phone)

2009-07-02T13:28:00.001-04:00

Waiting, relaxed, resigned to my fate. Waiting room is relatively empty. Could cancer be on vacation?

(Posted from my mobile phone)

2009-07-02T12:29:00.002-04:00

Arrived New York, walking to 68th & York.

(Posted from my mobile phone)

2009-07-02T11:18:00.004-04:00

On the 11:17 to GCT for my chemo results.

(Posted from my mobile phone)

CT / PET Scan Day

2009-06-30T16:36:00.003-04:00

Bridgeport, bridgeport stop is next. Last four cars, bridgeport.

(Posted from my mobile phone)

2009-06-30T13:15:00.001-04:00

All done, super hungry!

(Posted from my mobile phone)

2009-06-30T11:24:00.000-04:00

Drinking and shooting up (it's not like it sounds; contrast fluid and radioactive isotope)

2009-06-30T10:02:00.001-04:00

In the waiting room at MSKCC.

2009-06-30T09:10:00.000-04:00

Arrived grand central.

2009-06-30T07:58:00.003-04:00

Today I'll be live blogging my trip to sloan to get the scans that will eventually be essential in determining my post chemo status: remission and surveillance, surgery or more chemo. I likely won't learn anything myself, but some radiologist somewhere will. Ill hear the results on thursday, which I will also live blog. (Today is a bit of practice, blogging wise.). The posts will short, twitter style

On the 7:50 express to GCT.

(Posted from my mobile phone)

I'm Back

2009-06-17T16:22:00.007-04:00

Well, I survived chemo.

I still have the usual suspects of side effects for this time in the round but as per the cycle I'm starting to feel better.

What I'm coming to terms with is that this isn't another cycle. We're discussing return dates to work, non-medically related plans and other normal life things.

Still, it feels good to be done, at least as far as we can predict.

It's the Cure that Gets You

2009-06-14T16:32:00.004-04:00

It struck me today as I was resting and feeling fairly awful that I'm most likely cancer free.

Of course I don't know that for sure, so I'm tempering the thought, but I have completed the recommended treatment, which in 90% of cases of good risk pure Seminoma tumor like my own does defeat the cancer.

I'm reminded that on day zero of treatment back in the beginning of April and of course the time when I had a fast growing six centimeter tumor on my lymph node I was feeling physically excellent. Now 70 days later I feel awful, have had nearly no physical activity and spend that time eating mostly only what tasted good whenever. I am probably in the worst physical shape of my life in terms of fitness yet, unlike before, I will live.

I've taken some periodic pictures of myself during the course of my treatment which I haven't looked at all together, because I know I'll probably be shocked. Perhaps I'll post them. In any case I'm looking forward to reversing the process, getting active again and eventually back in the gym, regrowing some hair, etc. Here's hope that it's not a false start before another round of treatment. I have some time before I'll be able to do all that I want to anyway.

In the meantime, my daughter had a beautiful day today; her first dance recital, which went perfectly. Renee has posted some pictures on FaceBook and elsewhere. It was such a treat to see our daughter be so happy.

Fighting Drowning, Literally and Figuratively

2009-06-12T13:23:00.020-04:00

Over the course of my week's treatment, they put over two liters into my body intravenously per day. By the week's end, like today, I've had 10 1/2 liters forced into my bloodstream.

This is in addition to one and a quarter liters that I'm supposed to drink per day, for another six plus liters orally.

By today, I feel like my skin is going to literally burst. My veins have retreated into my doughy flesh and my face takes on a completely different shape. My legs are tree trunks.

I wish I could say that I'm overjoyed that today is my last day, but I don't feel that way. This has been my life now for nearly three months, and the next steps, like the outcome of the treatment, and returning to work, and to a more normal life; they all can seem like scary prospects.

So, instead I'm still taking things one day at a time, and over the next few days I'll be focused on detoxifying and resting, counting the days until I feel a bit better, and following the remaining course of my non-chemo medication.

I guess the tumor is the thing that I have to remember. If all went according to plan, as of today or earlier the final nails have been driven into its coffin, and that's why I'm here in the first place, to Live Live Live.

P.S. I feel like this is a really negative post, and I wish it wasn't but it is an honest post. I expected day 20 to be different.

I have higher hopes for about 10 days from now, when the side effects from the round have usually diminished, and my whole outlook changes almost overnight:

Actually the nurses here have just said that it's a common feeling for the last day of treatment to be anti-climactic, so I guess I'm more or less normal.

Renee and the kids were here today, and my parents were here yesterday which really helped. More thanks to you and to everyone who has been keeping me in mind as push through this final day.

Transitions

2009-06-11T18:44:00.006-04:00

I've decided to make some changes as this blog and I are transitioning to a new phase.

Lately I've felt that it had too much orange and since the beginning I've been looking for some artwork that made sense for the banner.

When we lived in Poland we became familiar with an interesting road sign convention that was language neutral.

When entering a town, like Redzikowa in this case, the sign looked like this. When you were on any road heading out of the town, there would be a red diagonal stripe across the city indicating the town center was now behind you and you were moving away from it.

(On an aside, I remember seeing a few minutes of Amazing Race where they were in Poland and one of the teams didn't get the convention and lost a lot of time going the wrong way).

Anyway, I am putting cancer town behind me, as reflected by the new blog banner.

Like many Thursday's I can't say today was easy. I am keenly aware that tomorrow is my last day of treatment, but I also know that Saturday is Neulasta day, and Sunday, Monday and Tuesday are the dreaded steroid days, so I feel like while tomorrow is symbolically important, it's just another step in the journey to July 2nd.

85.3% Done

2009-06-10T11:45:00.002-04:00

Yesterday was a crappy day. I'm not sure why but I felt lousy all afternoon and evening. I was surprised because I've come to rely on 'the pattern' from prior rounds to help me anticipate the side effects and this was out of the ordinary.

I kept reminding myself that I'm almost done and the good news is that I'm feeling much better today.

I'm on my first medication today (hence the .3% added to end of the 85%) with visitors planned for tomorrow and Friday to help make the time go faster.

I'll still have the recovery period to go over the next two weeks but at least it'll be (hopefully) for the last time.

I'm thinking about skipping at least some of the steroids that are normal prescribed for the days following my treatment. They have nothing to do with the cancer fighting drugs; instead they augment the effectiveness of the anti-nausea drugs. For me, I haven't had a lot of problems with nausea, but I have had really bad side effects from the steroids in terms of my sleeping. Anyway, we'll see and I won't make any changes until I discuss it with my doctor.

The Final Countdown

2009-06-08T18:01:00.003-04:00

I can't believe I've begun the final round; that I'm incrementing the 16-20 set of treatment days; that I'm in the last box in the upper left widget of this blog.

On the one hand it's taken forever to get here, but on the other I feel like it's surprising that I'm this close to the end. (Although I'm hesitant to call it the end because we don't what the PET scan will show.)

Today was easy, routine. I'm exclusively going to the same office most of this week. It's the one which is slightly further from my home but I prefer it.

My Red Blood Cell counts are still low, and my onc says that it'll take up to three months for them to get to my pre-chemo levels. They don't give pro-crit (a RBC stimulating shot, which is similar to Neulasta for WBC stimulation) because some studies have shown that they have long term cancer implications. The only other treatment besides time is a blood transfusion.

The symptoms of my low reds are that I get winded from next to nothing, like walking up a single flight of stairs. With a more serious effort I see spots and need to sit down. (Red blood cells carry the oxygen from your lungs through your circulatory system to your organs and other body tissue. With less of them, the body inefficiently oxygenates).

But in the grand scheme of things, this is a minor complaint. Overall I'm handling the chemo very well, so I'm happy about that.

Next After Chemo

2009-06-05T07:32:00.004-04:00

With the forth and final round nearly upon us, I wanted to share the schedule post-chemo for the evaluation of my cancer.

There are two appointments I have which will determine what, if any additional treatment I'll require.

On June 30th I have a PET scan at Memorial Sloan Kettering. The PET scanner is also a CT scanner and will tell us and the doctors two things. First the CT aspect will indicate the new size of the tumor. Secondly, the PET scan shows the level of biochemical activity in the tumor, but the most useful determinations will be made by comparing the June 30th PET to the one I had on March 24th.

The second appointment is on July 2nd with Dr. Motzer. On the 2nd Dr. Motzer and his colleague will review the scans and make their recommendation. His colleague is the surgeon who does the lymph node surgeries when they are required.

There are three possible outcomes.

The scan shows that the tumor is either the same size or larger, or even has shrunk but and that there is still significant metabolic activity. This would indicate that I have a chemo resistant tumor and I would need additional HD (high dose) chemo, the details of which I don't know.
The scan shows the tumor is the same size, but that the metabolic activity is reduced or eliminated. In this case we're in a grey area, with the discussing being whether or not to remove the affected lymph node surgically or not.
The third outcome is the most likely and the most positive. That case would show that the tumor is reduced in size to less then two centimeters and that the metabolic activity is completely shut down. No further treatment would be required and I'd enter the remission period.

I've imagined this blog would be heavily trafficked at the whatever time I was going to be posting whether I'm cured or not. Well that time will be on or around July 2nd.

Additional Thanks for Saturday

2009-06-03T16:54:00.005-04:00

Avi let me know that he was not the only contributor to our Saturday night dinner gift. Our check was taken care of by a group called the "jillies" (of which Avi is a founding member). They are a secret society of sarcastic supporters of a silly singer and a set of super supporters.

So an additional special thanks for the generosity of the jillies in making an enjoyable weekend even better. We certainly were surprised! The execution was perfect and we love you guys. (Sorry we misunderstood the note).

A Most Excellent Weekend

2009-06-01T16:35:00.014-04:00

People's unbelievable generosity continuously overwhelms me.

Renee and I are back from our weekend getaway and we had a really amazing time.

On Friday night we met an old work colleague of Renee's for a drink and then I left them to catch up while I went to meet my friend Bob. They ate at Pearl Oyster Bar, the restaurant of an author they both worked with, and were generously comped a treat.

Bob and I went to a tapas bar in his neighborhood, which was loud and yummy with excellent sangria. I hadn't been in such a lively place in so long, I actually felt like I was in my 20s again, albeit with less hair :-)

Perhaps strangely on our actual anniversary date, it was so much fun for us to do our own thing and then meet back at the hotel. Usually we would never spend a children free night apart, so it felt somehow luxurious to do so. Anyway our true celebration plans were for all the following day, so we felt like Saturday was the more important day to spend together.

On Saturday we had a late New York classic bagel breakfast, walked in Central Park, and saw the matinee show of "Guys and Dolls", which was kinda bad. Renee loved Lauren Graham in Gilmore Girls, but the girl can't sing or dance. The stage time she shared with Kate Jennings Grant, who I guess is a true Broadway performer, was painful, even to my uneducated ear. Their duet juxtaposed their voices, really highlighting how bad Lauren's singing was. Her part sounded more like shouting then singing. The only great part of the show was about 20 seconds long, by a singer named Mary Testa who has one of those voices that even someone who knows nothing about singing (like me) can recognize as really powerful. I'm not a real fan of Broadway or musicals, but at least I could chuckle at the train wreck aspect and enjoy some of the video technology they used.

(Later we found out the Obamas saw a Broadway show that day too; to bad we didn't have tickets for that show. We did see his presidential motorcade go down a closed FDR, as our taxi meter ticked an extra five or six dollars sitting in the traffic they created).

Saturday night was the main event of the weekend, a meal that we had been trying to get to for years. The brother of one of my oldest friends (and a super nice guy) is a long time manager at Tribeca Grill and we've talked about trying it out for probably as long.

Although Avi wasn't managing the restaurant that night, his staff was well prepared for us. They knew it was our anniversary, and they presented us with a note he had left, which we couldn't quite believe. If we were reading it correctly, there would be no bill at the end of the night!

We knew that occasionally Avi's family members would get perhaps a free course or dessert, but we had no such expectation. We would have been happy with a nice table.

We really felt that we had misunderstood the note and went ahead with ordering as if there had been no change in plans. We each had a celebratory glass of Champagne with our appetizers (shrimp for Renee, tuna for myself). For our entree we switched to a bottle of red wine, the scallop entree for Renee and a filet mignon for myself. Everything was absolutely delicious, and Mike, our waiter, brought us two surprises: a small in-between course of ravioli with fava beans and pesto, and finally two delicious desserts: strawberry cheese cake and fruit parfait with a single candle on each with "happy anniversary" written in chocolate on both plates! (I loved the cheese cake, Avi read my mind.) We felt like true VIPs.

With neither of us drinking too often these days it took a while for us to finish the bottle of wine and by then we were well buzzed. Without thinking about it I asked Mike for the check. Neither of us could believe it when he simply shook his head, saying "there's no check for you tonight. It has been taken care of by your friend."

Avi - if you're reading this (and you didn't get my email or my text message :-) THANK YOU. It's too much. I was speechless then and I am now. I'm really honored that you'd extend yourself this way. We will find a way express our graditude.

After Tribeca Grill we went to a rooftop party thrown by Renee's cousin, Michelle. It was a beautiful night to be outside and the view of midtown was amazing. We only stayed an hour or so but it was again nice to be at an adult party without children to chase or perhaps more importantly children to wake up to early the next morning.

On Sunday we went to KOOZA, the current Cirque du Soleil show which was playing on Randall's Island. It was very entertaining and flawlessly performed but I have to admit I was a bit exhausted by that point in the weekend.

I had walked more, slept less and drank more in this weekend then I had in probably a month, so I was feeling a bit worn down. In fact on Saturday night I did get a fever (a Saturday night fever?) as I did in earlier rounds when I overtaxed myself. Per my oncologist such a fever is only a concern if it exceeds 101.5°, in which case I must go to the ER immediately. Of course we didn't have a thermometer at the hotel, but we didn't think it was that high. When I woke up on Sunday it was gone. I did however sleep about 13 hours last night, and only after that did I feel 100%.

We really had an excellent weekend, with special thanks to Avi, my in-laws for watching the children (being away from your kids is only relaxing when you have competent child care and with you guys on the job we are able to forget we had them!), my parents for their contribution and to the many of you who wrote to wish us a happy anniversary. It truly was very, very happy.

Wedding Aniversary

2009-05-29T09:05:00.005-04:00

Today is my five year wedding anniversary. As crazy stuff happens in life (like Cancer), it loads the elements in your life with additional burden. Under that burden, two things can happen. Stresses and cracks can appear and previously hidden flaws can be rent open, or it can flex and compensate and bunker down, shouldering the new load, leaving it stronger now and in the future.

After five years in this marriage I can't think of a better decision that I've made in my life. And that becomes more and more clear with each year, each crisis, each joy; anything life sends.

To celebrate tonight Renee and I are going to New York city for the weekend.

We have many things planned; dinner at Tribeca Grill, lunch at Pearl's Oyster Bar, a non-kids party, a Broadway show, Cirque de Soleil on Sunday and lots of uninterrupted sleep in a quiet hotel room with blackout shades and the Do Not Disturb sign on the door.

Children, while they are absolute joys in their own right, don't always foster the ideal environment for chemotherapy rest and recovery, so it'll be a nice change to be just Renee and I for a few days.

I've been feeling better since I stopped the steroids on Wednesday, although I was surprised to find that last night I was ready for bed at the same time the kids were, and I slept about 12 hours straight through.

15 Days Down

2009-05-22T11:32:00.008-04:00

Well, round three is nearly done, although that's not really true. The next three or four days, if the pattern is any indication as it has been, will be the real impact of the round.

I have Neulasta tomorrow, then three days of steroids with their various side effects. Also for this round my red blood cells are moderately low. The red blood cells deliver oxygenated blood to all my body tissue. With a shortage of RBCs this process is slower and inefficient resulting in...low energy and the potential for light headedness.

My guess is that, like before, I'll take a few days off blogging, as well as most other things.

Not weighing on my mind is the fact that if I had elected for the three round treatment that I would be done today (surprisingly). I guess you can handle what you're mentally prepared for.

But aside from all my griping, I want to take a moment now to say thank you to everyone, near and far, from those I've known to years to others who I've never met but care none-the-less. The outpouring of thoughtful support in myriad ways has continually lifted me and kept me going.

For all the food, prayers, gifts, treats, visits, phone calls, emails; in the very beginning but still now, remembering, asking, and caring, thank you!

And happy summer kickoff and memorial day!

New Blog Name and Mr. Clean Shows Up

2009-05-20T14:18:00.010-04:00

I'm changed the name of my blog. I like it better.

The anger I was feeling way back when I was determining what I'd name this blog has faded, so it feels better to focus on what this treatment is doing for me; that is enabling me to live.

I need this reminder on Thursdays. They continue to be a more difficult day in terms of side effects, but after nearly three full rounds, both things are happening; my cancer is dying and I'm living.

This round is also easier because I'm more comfortable speaking authoritatively about the side effects, and from prior rounds I feel confident that they will go away. Dr. Motzer really seemed to be right when he said the first round is really the most difficult, with all its unknowns.

The big change with this round that I've been quite aware of is my head hair loss, which is now nearly completely gone. So much so that only with the recent shorts and tee-shirt weather have I noticed that I've lost a lot of hair on my upper arms and upper legs too. It seems to be gone where my clothing has the most contact and motion against my skin.

This picture also shows the redness and swelling that comes with the steroids, mostly. I have gotten more sun with the aforementioned weather, but not enough to cause this redness.

But, these things will pass too.

Newbie

2009-05-20T13:09:00.007-04:00

On my first day here in treatment everyone could tell. I wasn't sure how until today, when another first timer came in. He was with his wife and between the two of them the vibe was massive.

The first day is truly scary, and in this couple's case they just were diagnosed a week or so before, unlike myself. So in many ways for them it's double shock. Your own personal reaction to the treatment is totally unknown and that is the worst part. Add the whole process of coming to terms with the fact that you have cancer and it's rough.

But it also shows how far I've come. I'm full of anecdotes and helpful hints. I've also helped about seven or eight people connect to the wi-fi networks with their laptops, and my fellow Internet junkies are well appreciative of that.

On the other side, Wednesday are starting to feel like Thursdays used to. The bloated and tired feeling comes earlier, and my buzz from my Monday adventure wore away after Tuesday.

But my treatment overall continues to go well. I've managed to use the same line for the whole week so far, and on my right arm that had the five weeks of rest. This allows my left arm to rest for the final round. The fewer pricks the better!

Tree Trim Challenge

2009-05-19T14:01:00.004-04:00

Remember I was looking for some mental challenge? And remember I wasn't feeling that productive? And that was making me feel useless and incompetent? I found something that addressed all those requirements. We have a tree that is now dead and it is slowly leaning more and more on the utility lines that supply the house with electricity and telecoms (which also delivers Internet and phone).

The concern is that eventually the tree will add enough weight on the line that it will give away and cut us off.

Cutting the tree down is complicated by the fact that the cut you'd have to make in order to remove the tree without taking out the line is about 22' above the ground, out of reach of my normal ladder.

Sounded to me like the perfect excuse to break out my excellent collection of climbing gear that hasn't been used in years and years. I can apply all those skills: knot tying, the physics of load factors and force vectors, climbing and building anchors; they're all applicable to this problem. As an added bonus, I would actually complete a useful task and one that was stressing Renee out.

The business case was to avoid the cost associated with renting a cherry picker, although the fun factor was the secret reason for my proposed solution. I would fashion a horizontal zip line, anchored by two large trees on the property, positioning myself above the offending tree (which was too dead and small to support my weight). I would then raise from the ground one of two saws. If my position was stable at the cutting location, I would raise a chain saw and start it from above the dead tree, cutting it above the location of the highest wire so it would harmlessly fall away. If my position was more precarious, I would use a wood saw, powered by elbow grease alone.

There was only one immediate problem with the plan (although that wasn't the biggest problem by far, but we'll get to that.) The only problem I had was that the I had the wrong kind of rope for the zip line. The only two ropes I had were both dynamic ropes, meaning that they have properties similar to a bungee cord, stretching under load (although to a lesser degrees as a bungee cord) . The purpose of a dynamic rope is to absorb your weight gradually when you shock load it, as in when you fall off a vertical rock climb, cushioning the de-acceleration process. However, it is entirely inappropriate for the horizontal zip line that was part of my solution, because the ropes position without load will change dramatically once loaded with my 160 lbs of body weight (picture the string on a bow and arrow as it's being drawn).

OK, now to the 800 lb gorilla in the room: this is cancer blog, about me surviving, and about the side effects of chemotherapy, like weakness and lack of energy. Hardly the time to engage is such a seemingly risky project, risking an injury (or worse) that could delay my treatment, or so said Renee and probably anyone else I might have shared my plan with.

So, for many days the plan existed only in my head, and I took no action. But I really couldn't let it go! I mentally obsessed over every detail, wondering if it would actually work. The glaring problem was the lack of static line (the opposite of the dynamic robe I had; one that wouldn't stretch), but the purchase cost of such a line would be about the same price as the cherry picker rental.

I was also running out of time, as there was no way I could do any of this except during my second off week, which was quickly ending. There was also no time where Renee wasn't home to fret and interrupt, nor was there much time when Renee wasn't home and I didn't have one or both of the kids to watch.

But, on Monday a window opened up! Yes it was the Monday of chemo week, starting at 11 am. Was I crazy to try this in a couple of hours the day I was to start chemo? I don't need to do a survey on this blog to see what you all would say to that rhetorical question. I know it would be a landslide something along the lines of "hell yes".

Well, I'm crazy. Crazy like a fox. In about an hour I rigged the whole thing up, except for a 25 foot jumar up the tree I used for Anchor A, which I had done a couple days prior. I had to know if it would work. Once it was done, the line was above all the power lines but not above the heavy branch that would need to be cut. Further, I didn't have the strength to really take enough stretch out of the rope when I connected it to Anchor B. If I was closer to my normal, pre-chemo strength and/or had a helper, I probably could have introduced more tension to the dynamic line.

Here are some pictures. They are a really bad and disappointing. I apologize for their poor quality; I was using my camera phone as Renee had our good camera with her. Unfortunately the dark photos plus the green spring leaves drown out the very narrow ropes and wires. The power lines are all black. The zip line is red. The test line is pinkish at the top half and green at the bottom half (the green was the prusik knot loop I was connecting myself to in order to test it under load). They can be seen in their full resolution here, and with captions, which does help a bit if you're really that interested.

Based on the unloaded position of the horizontal line, I could reach the offending branch with either of my saws. Unloaded, it looked like it would work, although it wasn't ideal! Before stringing the zip line into position, I had clipped my second dynamic line to it. This second (vertical) line, not shown in the diagram, would allow me to raise and lower the saw, as well as rappel (abseil) from the zip line when I was done.

But it also served as a way to safely test the stretchy line problem before leaving the ground. I could test the "sag factor" of my body weight by attaching my self to this vertical line near the ground. Well, it failed. Under my body weight, the horizontal line sagged about 50% toward the ground, to about 11'. I have a 12' ladder! Without a static line, the plan wasn't workable, just as I originally suspected.

But did I care? Nope. I had a blast. My hypothesis was tested, it could have worked, but not without an investment that I wasn't willing to make. The result was that I was on a natural high the rest of the day, including through my first day of chemo in round 3. I'm still smiling about it. And I didn't get hurt, which didn't surprise me. I climbing frequently (and built zip lines) for many years and had/have a perfect safely record.

But I itched the itch with my little project. In a few weeks I'll be at United Rentals, happily renting a cherry picker for this job.

Another Day, Another Dead (Cancer that is)

2009-05-18T21:06:00.003-04:00

Another day, another dead bunch of cancer cells.

The routine of treatment is really helpful, now that I'm in the third round. I know what to expect and I have more confidence that the side effects will dissipate with time, instead of my paranoia that these annoyances will become chronic.

I also encounter many familiar faces as I come, although they are somewhat random meetings because we all have different schedules with our different cancers. So it's always a nice surprise to catch up with someone who I've spoken with before.

It also gives me some great perspective, although a conflicted perspective. The truth is that there are many others that have it much much worse then I do. I in no way rejoice in their suffering, but it does help to remind me of a few ways that I'm super fortunate:

I had/have no other health issues which limit my ability to focus on just my treatment.
My cure rate is very high.
I'm young and strong and for whatever reason (probably related to the above) my body is managing the side effects relatively well.
I have you all as my massive support group.
I found this early.
I have health insurance, and so far they've given me very good coverage .

I see a lot of the people I mention above having some really bad days during their treatment and my heart goes out to them. They have to worry about drug interactions because of preexisting ailments. They have uncertain futures. Many of them are older and more alone or are stage III or stage IV.

So, anyway, round 3 started off smoothly.

Feeling Normal Again

2009-05-15T09:04:00.006-04:00

It took about three or four more days then round one, but on Tuesday I started to feel more or less normal again. In round one, I woke up on the Saturday between the first and second rest week feeling that way, but this time it was more like midweek of the second rest week.

This must be the result of the cumulative effect that I had heard about. There is no way to predict if this stage of the recovery will continue to stretch but I'm going to assume it's likely. If the recovery time extension is linear, that will mean that in the next round I will start to feel better on the equivalent of tomorrow, or only one or two days before treatment begins again. I can't say that I'm looking forward to that.

(I'm also predicting that my decision to do four rounds of EP (Etopiside and cisPlatin) instead of three rounds of BEP (Bleomycin + EP) will resurface, because with the alternative treatment I would be done on May 22nd, but I'll cross that bridge when I come to it.)

During the last few days, and curiously for me, I had no desire whatsoever to be on my computer, instead reading a book during the rainy days, and being drawn outside when the weather allowed it.

Yesterday, I felt well enough to go to the office, having experienced the isolation that the stay-at-home moms that I'm close to have described to me. I've loved the opportunity to spend luxurious amounts of time with family, but it's very easy to be completely absorbed in the self contained busyness of two young children, completely untethering you from the life outside of that insular world. While challenging for many reasons, it is not the same mental stimulation as almost any focused adult task. I yearned for some complex problem solving and adult interaction.

At the office I sat in on a meeting and then caught up with several co-workers. There was a very lovely outpouring of concern and support which was very buoying. It was also interesting that some of the very same challenges were still being debated two months later, with little apparent progress. Business is truely frustrating these days.

On the way home I was reacquainted with stop-and-go rush hour traffic, something I had no "yearning" for in the weeks that I've been off!

Now, a relaxing weekend and on to (ding ding) round 2.

Sleep

2009-05-04T10:06:00.015-04:00

The three or four days after treatment are very strange. Everything is very slow, soft and low energy. It's a struggle to do any small task, and once it's done, there's no satisfaction, but instead a feeling of "OK, what next". Time crawls. Food tastes all the same, regardless of what it is.

Describing it as being "tired" is inadequent. In fact, the idea of sleeping is unappealing. And you don't sleep if you try. It reminds me of the listless third world starving children that you see in the charity plea ads that don't even have the energy to shoe away the flies.

The steroids add to the problem. I suppose I wouldn't skip them, trading their effect for nausea, but I hate what they do to my sleep. Fortunately each night gets better and I only have to take them for three days after treatment.

When I can't sleep I draw childish pictures of me thinking about me trying to sleep.

Neulasta Shot

2009-05-03T15:04:00.001-04:00

Twenty-four hours after I finish a round I get a shot of something called Neulasta, which stimulates my bone marrow to hyper produce white blood cells, to make up for the WBCs that are destroyed by the chemotherapy process.

The shot it given at home by Renee, using this highly designed, cheerfully packaged sub-cutaneous syringe. Apparently, the cost of this syringe in the United States is anywhere from $3000-$7000; that's for a single dosage!

Neulasta is a lovely sounding marketing name for this drug; the generic name is pegfilgrastim. The "filgrastim" (according to this site) is "obtained from the bacterial fermentation of a strain of Escherichia coli transformed with a genetically engineered plasmidcontaining the human G-CSF gene." (emphasis mine).

The whole thing reminds me this, down to the cheery blue color:

Don't recognize it? You can watch the video after the jump.

Substitute E. Coli with the T-virus, immune system rejuvenation with youthful rejuvenation and and sprinkle in some nasty side effects and it feels to me like pretty apt comparison!

OK, I'm not a zombie yet, but about two hours afterward, I feel like the process is beginning. My body seems to receive an urgent message to deprioritize to the background everything except bone marrow activity. I mean everything, like homeostasis, respiration, minor things like that.

I'm exaggerating, but I was in bed by 7 pm, under twelve blankets in the smallest ball I could form. I guess the stuff works, I just wish it could be a more gradual process. It's one of the worst parts of the recovery days.

I just have to remind myself that the whole point of it is to allow me to stay on my chemo schedule and to not expose me to dangerous infections, which it has done successfully.

Halfway Done

2009-05-01T14:34:00.002-04:00

Fridays are at a bit of a blur. I just watched Iron Man, a great time killer. Not much thought required.

Anyway, I'm nearly done. All the meds are in, I'm just waiting for the hydration to finish so I can start my two weeks off, my two weeks of feeling closer to normal each day. This week and round was much better then the last for a host of reasons, but it's still good to be done.

Fifty percent done that is. Two rounds down, two rounds to go.

Thanks again to everyone for all your support. Its value is unmeasurable.

Treatment Schedule Widget Bug

2009-05-01T09:28:00.000-04:00

There seems to be a bug in the Google calendar widget that I'm using where it won't show anything in the month of May. Until I get it fixed, the week of May 18th, Monday-Friday I will have chemo. The remaining weeks of the months are rest.

Ugh, Thursdays

2009-04-30T09:58:00.003-04:00

Thursdays of the chemo weeks continue to suck. A host of minor symptoms gang up to slow me down.

Also, I slept like crap last night. And either my IV wasn't properly secured or I rolled over it too much but it left the vein, so they pricked me again with just a butterfly today. This means I have to keep my arm still, limit my standing up and down and type one handed. And get another prick tomorrow. These are a bunch of thing I was hoping to avoid. Oh well, I'm almost halfway done; day nine of 20.

The good news is that my mom and dad came today to watch my son so Renee is with me while my daughter is at pre-school. For the earlier days of this week I had been driving myself because I decided I wanted try to be a bit more indepedant, and it worked out great. Today I'm glad not to have to.

I have to remember that no matter how I feel, my tumor is having a much worse day!

Yosemite

2009-04-30T08:30:00.003-04:00

Even before I was re-diagnosed, I thought of some things that I'd like to achieve in the next few years.

In an interesting trait of human nature, I've also heard that the more people you tell about your goals, the more likely you are to achieve them, so I'm telling anyone who will listen.

Before I turn 40 (I'm currently 34, nearly 35) I want to rock climb a multi-day assent in Yosemite National Park. This means sleeping in a porta ledge at least a couple of nights and this type of activity is accurately described as "vertical backpacking".

This is not a completely 'out of the blue' dream. In high school and college I spend a lot of time climbing often, sometimes 3-4 times a week. It's the thing that I did passionately and well when I was young. Here is a picture of me top-roping a 5.7 in sneakers at the approximate age of 15. In college I lead 5.11 on natural protection. I also successfully climbed the third flatiron in Boulder, which although it wasn't multi-day, was a 18 hour adventure of about 7-8 pitches.

Yosemite is the rock climbing mecca of the world, and I've never been there. And, despite many trips to California in recent years, I have never been ready to go there. The reason is simple. I haven't climbing in about 10 years. And if I pilgimage to Yosemite, I'm going to do some climbing.

So, I've laid down some ground rules, Renee has added a few, and I've given myself some time.

The rules:

I will hire a guide. For the 10 years or so I climbed, I only used a guide when I was first introduced to the sport, and he taught us nothing technical. All my additional learning was self-taught. However, a complexity of a multi-day climb in Yosemite, a long time off rock, and being older and wiser tells me that this is a unbreakable rule.
I will do my homework. There are hundreds of routes in Yosemite on the big walls. I will do the most well travelled, best understood and least technical route.
I will spend train in gym and on some real rock in the months leading up to this adventure.
Renee and the kids will be in Yosemite but will stand by at base camp.
I will save money separately for this little adventure and I'll make sure that it's not our only family vacation that year.
I will be prepared to fail in the case of weather or other unpredictable variables.

What We Told Our Four Year Old

2009-04-29T20:46:00.001-04:00

Today was another smooth day. I got a new IV line easily in my left arm that should last through tomorrow at least. Some of the unexplained but familiar minor symptoms have reappeared but I'm sure they'll disappear as before.

My daughter asked some interesting questions this morning.

When I was first diagnosed, there was much debate as to what we should tell her (she's four years old. Our two year old is at an age where he is very much in his own world, so we were less concerned about him.)

We consulted with a number of experts, friends and parents. We also looked for books on the subject.

Here are a few things we heard and learned that made sense to us:

Avoid telling her that I was "sick". The thinking is that if we used that term, then the next time she got a cold, flu or otherwise sick herself, she might be confused into thinking that she might have some of the same symptoms or treatments.
Not to be afraid to call in cancer. Although in adults cancer has a very negative connotation, in children no such preconceptions exist.
In my case, since the most likely outcome is a full recovery, lots and lots of encouragement that everything will be OK, even though it might take a long time. We just make sure we repeatedly remind her that soon life will be back to normal.
Allow her lots of processing time, and to be ready for questions and seemingly odd times.
Let the people she spends time with know that these changes are occurring (babysitters, teachers, relatives, etc.) so they can be ready to answer questions in a manner consistent with our parental decisions, and/or to report changes in behavior so they can be addressed.
Finally, cancer is not contagious and will not spread.

We ultimately decided to avoid the term cancer. We felt that she might hear about or otherwise encounter someone else with cancer, and as we've learned no cancer case is like another, we wanted to differentiate my situation.

Instead, wanting to avoid the generic 'sick' as mentioned, we decided to talk about the tumor. So right after my biopsy, I showed her the tiny scab from it, and discussed with her the existence of the tumor, telling her that some of my cells had gotten confused and had started to grow into a lump that, if untreated, could start to cause problems.

We told her that I would need medicine that would make me tired, and loose my hair, but that they would also break apart the tumor and that would make me better in the long run.

On the issue of my hair, at the time we didn't know that it would take a while for this to happen. In retrospect it would have better to tell her only about the immediate changes, because her sense of time passing is still immature. When it finally happened she wasn't totally surprised, but I feel it would have been better if we waited to discuss that side effect until it started.

The last thing we told her was that I wouldn't be going to the office for a while, and this actually left her excited about that prospect.

Within a few days of that discussion we identified some books. Unfortunately for my particular case but understandably based on the numbers, we found many more books addressing cancer in the mother. I believe that this is because there are many more cases of breast cancer in mothers of child raising age, so there is a greater need and demand for these books.

We finally did find one book regarding cancer for dads, and another 'old but good' resource from the 70s!

They are:

How We are Born, How We Grow, How Our Bodies Work, and How We Learn. This is a book from my childhood that I remembered immediately once I was discussing my white and red blood counts with my doctor. I distinctly remembered some of the illustrations from this book from over 20 years ago. Fortunately my mother kept her copy and I found it immediately at her house. Since that initial discussion our daughter has starting asking a lot of questions about the body, so I knew it would be a useful resource. Although it was written for older children, some key illustrations helped us answer her questions.
The first book we found about dad having cancer was given to us by the social worker who visits the oncology office on Mondays. I can't find it anywhere in the house to give you the title, but I guess the point is that these dad books exist, and it worth seeking them out if your situation is similar. Per our earlier decision we just substitute 'tumor' for 'cancer' when we read it to our daughter.

Easy Peasy

2009-04-28T15:58:00.003-04:00

Knowing what to expect has had a huge beneficial effect on my chemotherapy.

It's been only two days since I began round two, but so far Dr. Motzer's prediction that the first round it usually the worst has been correct. Of course it helps that the rest of the family is healthy (knock on wood), but even outside of that it has been a couple of smooth days.

I successfully reused my catheter from yesterday for all of today and then removed it. Tomorrow I'll go to the back to the Fairfield facility to the nurse who seems to be most capable of placing a solid PVC (peripheral vein catheter), and I think I'll maintain the schedule of using the Fairfield office on Monday and Wednesday, and the Trumbull office on Tuesday, Thursday and Friday. On Friday I'll probably just get the butterfly style IV line, which should be OK since it only needs to last that day.

I've been quite tired both yesterday and today, but so far not terribly bloated; that will probably come later in the week. Fortunately I've been able to sleep well, which was not the case at certain points previously. However it seems to be best if I don't nap in the afternoon, and if at night I stay asleep, as I've found that when something disturbs me it has been difficult to fall back asleep again.

The other thing that has happened is that even though my hair is short, my pillow case is totally covered in hair in the morning. If fact I can tell which side I slept on, because those areas are patchy. This morning my left side and the back of my head are blonder in patches, not because my hair has changed color but just because more scalp is visible due to those areas being thinner.

Round Two Begins

2009-04-27T14:19:00.005-04:00

Well, day one of round two is nearly finished. My oncologist doesn't agree with the ER doctor that I had/have cellulitis and has recommended I discontinue the antibiotics.

He also is sending me for an ultrasound of the arm after I'm done. The redness and swelling are gone but there is now a distinct lump on my forearm which he thinks may be a superficial blood clot. The ultrasound will confirm.

In the meantime, they used my other arm for the infusion. The nurse (whose name is Renee) did a lower gauge catheter which hopefully should hold through tomorrow, enabling me to be pricked every two days instead of every day.

I also had a CBC (complete blood count) and all my blood levels are within the normal range.

Before I came here this morning I did have the thought "what can I do while I'm feeling normal" but other then that I was looking forward to taking this next step forward in my treatment.

UPDATE - 7:06 PM The ultrasound showed a superficial thrombosis or blood clot. I want to emphasise superficial and ignore the scary stuff in the linked wikipedia article. They do get concerned by a deep vein thrombosis but that is not what the ultrasound showed.

I was instructed to elevate my arm and apply warm compresses to speed the reabsorption of the clotted tissue, which should take a week to fully resolve.

Hopefully they'll have no issue finding enough veins in my left arm for the next four days of treatment.

TC Awareness

2009-04-27T14:00:00.001-04:00

Returning to this topic with some more facts.

Testicular is the number one cancer in males 20-34 years old.
It is more common in whites then other racial groups.
There are only about 8000 cases per year in the US, compared to 91,000 cases of breast cancer.
The five year survivorship rate of TC (a common way of comparing cancers, apples to apples; doesn't mean you drop dead in year six) is 90%. I don't have numbers for other cancers, but they are always lower, if not significantly lower.

The most high profile TC survivor is Lance Armstrong. He was diagnosed in 1996 at the age of 25. He ignored his symptoms for many months and by the time he was diagnosed and treated he had a multitude of tumors (brain, lungs, abdomen) and a great survivor story.

Eric Shanteau is a more recent athlete who was diagnosed at age 24, about two weeks prior to travelling to Beijing to swim for the U.S. Olympic team. He postponed his o/e so that he could compete. Article here.

John Kruk was a major league baseball player (and now ESPN commentator) who was diagnosed at 33 in 1994. On his return when he didn't get much playing time he wore a T-shirt which read "If you don't let me play, I'm going to take my ball and go home."

Tom Greene, the canadian comedian that had a MTV show was diagnosed at age 29 in 2000.

On the front page of April 21st 2009 NY times, there was an article on heath care and layoffs which included a profile of a family with a 21 year old who is under surveillance for TC. I was surprised how expensive things are and it made me grateful for the insurance that I have.

Cellulitis

2009-04-25T08:23:00.004-04:00

It is Cellulitis. They started me on antibiotics.

Apparently there is a 10-15% chance of an infection with any IV drug delivery. Throw in a compromised immune system and the odds go up. Timing wise, it can take days to develop because it take a while for enough infected cells to be created and for the body to react with symptoms.

We were back home at 2 am and the swelling is already reduced this morning.

The inevitable trip to the ER

2009-04-25T00:52:00.001-04:00

At 11 am I noticed some tenderness in my right forearm. I didn't pay
much attention to it. By 9 pm or so it was red, hot ot the touch and
noticeably swollen. At midnight I told renee and we decided to call my
local onc's service and spoke to the on call doc. He was concerned
about infection and sent me to the ER.

Rachael, Adam and the kids are visiting from California so we left
them there and renee and I are now here waiting.

The triage nurse thought it looked like http://en.wikipedia.org/wiki/Cellulitis

We'll see what the er doc says.

--
Sent from my mobile device

Haircut

2009-04-22T09:28:00.011-04:00

When I took a shower today I ran my hands through my hair to wet it. After that I went to wipe the water from my eyes and I got a faceful of hair. I then put my hands back into my hair and grabbed two handfuls of hair and easily and painlessly pulled it all out.

If was time for a hair cut.

I have been anticipating this side effect since the day I was told it was coming. In a way I was looking forward to it; I felt like it was a way of announcing to the world that this was happening to me.

And then when I was feeling as tired as I was I again wanted it to happen, but for a different reason. I'd felt self conscious about how I must look: head down, walking at a snail's pace, speaking so softly I could barely be heard. I wanted there to be some badge showing, explaining that I don't normally behave this way, I'm not depressed and I have a voice and something to say.

The other side of it was vanity of course. How will I look without any hair? It my head secretly lumpy, misshapen and/or discolored?

Also, when people see, will they look at me differently? With compassion or pity? Or will they just assume I like my hair that way or was bald anyway and that I'm a picture of health? I guess we'll find out, although not quite completely yet.

(Click to enlarge)

We decided to make it a family event and Renee decided to express her inner hairdresser since there was no consequence to any mistake.

The end result turned out pretty good. I look a bit like the guy from Prison Break, a guy named Wentworth Miller, if I do say so myself.

There only potential problem is this that this isn't the final look. In the last two frames you can see a hint of the real final hair destination. Before we began clipping, the whole family had some fun grabbing their own handfuls of hair and pulling them out. With a full head of hair it wasn't apparent where those roots were located, but with it fully buzzed it was obvious.

So there's one more celebrity comparison we'll have to wait for, before we know how I'll be regarded when I'm out in public:

Stratford Touch-a-Truck

2009-04-21T23:40:00.014-04:00

One of the fun activities that Renee planned was a touch-a-truck event on Saturday. A touch-a-truck is a gathering of cool special purpose vehicles from local companies and organizations. These organizations completely detail and clean their vehicles and drive them to the site, usually a cordoned off parking lot. They then open of the vehicles to children large and small to crawl inside and out, usually for a small ($3-$4) entry fee.

Typical participants are the local fire, EMT and police departments, construction companies and towing companies.

On a regular day my son begs us to open up our boring cars so that he can stand behind the wheel and pretend to drive. He was in heaven.

Additionally, this touch-a-truck was in Stratford, Conn., and had something that was fairly unique. Stratford is home to Sikorski Helicopter's global HQ, and also one of their factories. That factory is the manufacturing home of the Blackhawk Helicoper, star of the 2001 movie, Blackhawk Down, a personal favorite. One of them was there.

(All images can be clicked to see a larger size.)

This particular helicopter was straight from the factory, with a total of 11 hours of total flying time. It definitely had that new ~~Car~~ helicopter smell.

According to the pilot who was standing by, its current configuration was completely unarmed and unarmored; it is sent to another assembly plant elsewhere to be configured for whatever service assignment it will have. In that configuration it is worth about $12MM. Once equipped with all the necessary weapon systems, an in-service Blackhawk is worth $16MM.

According to Renee I was the only adult who took my own turn in the seat after the kids (or before, who remembers) but she's pretty sure I wasn't the only who wanted to.

Back a few days when I was trying to remember what I enjoy doing? Well, being the biggest kid at the touch-a-truck? Sounds good to me.

Fun Days

2009-04-20T21:32:00.005-04:00

After Day 10's nightmare, I didn't post for days. I was trying hard to dig myself out of a rut. Renee I discussed doing fun things when I had energy, to try to at the very least distract myself. She put together some great activities, and I felt a little better each day. The best was the last day.

(To everyone who spent time with me on those days, many thanks for putting up with my mopiness.)

On Thursday I took the kids to Walmart! OK, that's not the fun part, but I did get five new bags of play sand and we opened up the sandbox in our yard for the spring/summer. I don't think I've ever taken both children to Walmart before and I was amazed at how many grown adults were wearing pajama pants in public at 10:30 am on a weekday. I felt like quite the stay-at-home dad. I didn't even bother resisting temptation at the register and the kids and I enjoyed sharing a bag of Cheetos, baby. After we got setup at home my son loved getting all his 'I dig dirt' construction vehicles into the sandbox for a spin.

On Friday we met Lisa at our local Zoo, a great resource just a short drive away. It was an absolutely gorgeous day so it was very crowded but it was really nice to be outside comfortably. I was still pretty tired so the girls did most of the work, pushing the strollers and such. I felt very much like a lazy dad. It was one of the times when I kind of wished my hair had already fallen out. Then I feel like I'd be given the benefit of the doubt as to why I wasn't pulling my weight with the kids.

That night (after naps) we went to Renee's other cousin's birthday party. This cousin always has my favorite foods when she entertains. I ate nearly constantly there and that was a key thing in helping me figure out that food and my appetite were an important part of me feeling normal again.

On Saturday was the big event, a new touch-a-truck event in Stratford, Conn. It was too cool of an event to bury in this post.

Click here for the Touch-a-truck post.

I just want to thank everyone who spent time with me on these days. I felt like a bad guest and sport and I hope I wasn't a drag. If I was it was not apparent from any of you and I appreciated that.

A Great Day

2009-04-19T15:03:00.009-04:00

Today I feel absolutely great.

Actually it started yesterday, and I continue to believe that it has a lot to do with eating correctly.

We were having steak dinner at my in-laws, and hunger struck for me and my kids an hour or so before it was going to be ready. My mother-in-law made some hot dogs for my kids and I, following my newly established rules on appetite and hunger, decided to have one too despite the fact that I was looking forward to the real dinner.

Then when the filet was ready in another 45 minutes or so I ate that too. I wasn't really hungry anymore but more importantly, I wasn't NOT hungry. I ate at an even more slow pace then usual (some would not believe that is possible) but I finished it.

We came home at about 9:30 and put the kids to bed, and I just had massive amounts of energy, especially in comparison to the way I have been feeling (basically I would say I felt an energized version of normal; a big improvement). I got on my computer for the first time in a while, and went to chemotherapy.com, a cancer portal I saw advertised in a magazine. The first thing I read was a blurb on "are you anemic", an apparent common effect of chemotherapy. Perhaps I was.

At midnight I went to bed out of practicality, instead of exhaustion.

Today when I woke up, instead of feeling weak and queasy and being afraid to sit up, I felt, well, normal. I had slept continuously throughout the night and I had the most amazing feeling. It's something I recall feeling sometime before my daughter was born. I believe it's called 'well-rested' or some strange sounding word like that.

My day was due to improve too. Some of my closest friends were coming to the house for a visit and had promised to completely take the work of entertaining upon themselves as guests, allowing Renee and I the pure pleasure of good company without leaving the comfort of our own house.

We had an excellent time, with excellent food (all arriving from remote kitchens), and after just the right amount of time for me and for the kids everyone and everything disappeared, including the mess, allowing my kids to have their naps and for Renee and I to have a quiet Sunday afternoon.

I've got a ton of really great people in my life. I'm starting to really feel like a lucky SOB, a seemingly surprising thing to feel when fighting cancer for the second time in my thirties, but true none the less.

Alopecia Beginning

2009-04-18T23:08:00.003-04:00

My hair loss has finally started. Each time I shower I've been pulling on my armpit hair because I heard that's where it starts first. Today I got eight or nine hairs easily with a moderate tug.

Later in the evening I gave a tug to tuft of hair on my neck line. I got 10-12 hairs with very little force.

I'll be writing more about my feeling about this because I've been giving a lot of though (thanks to everyone who answered the survey), but that's it for now.

Day 12

2009-04-17T21:12:00.002-04:00

It's been a long time since I've posted and I had forgotten how good it feels. I will force myself to post daily or nearly-daily regardless of my energy. (Besides, lots has happened, and now it's a lot to write!)

So it's been a week of rest. Each day I've had to relearn my limits. The energy that I have is extremely fleeting, but I've learned a few ways, through trial and error to try to manage it and avoid crashing, which, when it happens, is pretty bad.

It seems that there are two waves of effects from the chemotherapy, broadly speaking.

The first kicks in by the forth day of actual infusions. Liters and liters of fluid have been forced through your system (forced hydration is the most effective tool against nausea; that and fluid is the delivery mechanism for the actual medicine.) The resulting feeling is reminiscent of a long haul flights, in coach, where you unadvisedly never leave your seat to walk about or stretch. And you're flying 10 hours a day for five days.

But that's it. No hours of the bathroom floor, vomiting uncontrollably, like you hear about. I felt generally run down for the next few days, but each day felt a little better. My appetite was fussy. If I didn't eat immediately when I was hungry, the urge left and I didn't eat. At the time, no one in the house was eating, because of the stomach bug, so I fit right in.

The second impact of treatment came on Wednesday, and is continuing, although mitigated. Wednesday will have its own post, but this second impact is essentially a total lack of energy. It's somehow different then being tired, because being tired implies some cycle of exertion and activity that, when complete, results in fatigue. This effect instead existed as soon as I opened my eyes even after hours of sleep. If fact it was often worse then, as I'll explain.

Since Wednesday I've figured out that these energy ebbs have a lot to do with my appetite, something I previously have payed little attention to. For my entire life my appetite has never been a strong overriding stimulus for me to eat. And since treatment my appetite is very fleeting. It may say "hey, I'm a bit hungry, maybe" once, but if not appeased it doesn't utter another word. Then just an hour later, I start to feel awful; the kind of awful where you just want to crawl into a hole and shut off your mind. Eating becomes the last thing I want to do, but not doing to is a big mistake.

In that situation I've learned to just to force down food, and the endure the return of the back pain that I first experienced on the Wednesday (but still have no explanation for) and real queasiness. But (as I tell myself as I force down food) it's the only way to feel better over the next four hours or so.

And of course the better option is to avoid the situation above is to eat small and frequent meals, and eat immediately after I fell any urge whatsoever to eat. This allows me to create sustained bouts of energy, although perhaps they only last three hours or so. So if I basically closely manage my blood sugar, I avoid the crash.

So, I've learned a lot, and I can only hope these lessons will make the next three rounds easier.

Day 10 - Crash Day

2009-04-16T23:06:00.001-04:00

On Tuesday we were in the city (see earlier post) and we even walked cross town after our appointment to have a late lunch/early light dinner with our friend Kris and Jen. For the first time in probably a week I ate everything in front of me, feeling buoyed by our time with Dr. Motzer, getting out of the house and by our seeming defeat of the stomach bug.

However, by the end of the meal I was feeling seriously ill and was just desperate to get in a taxi to grand central, where I prayed our timing would allow up to hop on a convenient train. I had an inexplicable pain in my back that I could not placate even when sitting absolutely still. Even breathing sucked.

Fortunately we did get a quick train, although it was a crowded peak train. I don't remember must of the rest of the night, but I was very concerned about this back pain, and couldn't for the life of me figure out what was causing it. I had been also having a lot of blood in my phlegm and mucus since I've started treatment, but every doctor had just told me that I was just hyper sensitive to any ailment because I knew I had this disease and I was looking for any physical symptoms to associate with it.

Anyway, by Wednesday I was completely lost.

Writing now it's amazing how quickly some novel and persistent physical ills could be augmented by a bit of the unknown and doubt, ushering past the gate "could this be something more serious", and leading to a mental state that was cracking the foundation.

But that's exactly what happened, and it turned that day in the most challenging day of my life, without a close second in mind.

I was in total despair, and I could find pleasure in nothing. What was worse is that I couldn't even remember what I normally enjoyed doing, and any recollection of the candidates were tainted as well.

Renee and I sat and talked about it, and she reminded me of all the positives, of which there are many, but they didn't matter. I could not be convinced. I was doomed. I was broken. The details didn't matter. On that day it was literally impossible to "focus on the positive". The motto of the day was more like "just breathe".

My oncologist told me that during the treatment I'd have good days, and I'd have bad days. The category that Day 10 goes into is obvious. I'm writing about this on Day 16, but I'm writing about it because although it was a low point, it was part of the process, and I want to be able to remember it. I wanted to capture how I was feeling while it was still relatively fresh, and now hope that I never feel that way again.

Time does heal all wounds.

Sloan Kettering Visit with Dr. Motzer

2009-04-14T13:13:00.002-04:00

Today we went into the city to see Dr. Motzer. It wasn't imperative to see him mid-treatment, but because he wasn't available to see me pre-treatment because of his hospital rotation, I wanted to keep the appointment they had been able to give me.

It essentially amounted to a three hour wait to see him for 10-15 minutes, but we did learn a couple of key pieces of information.

This treatment works for everyone. This was a direct quote from him. As someone who lives in a world of life-saving clinical research studies and heavy statistics, he would not use "everyone" unabashedly. Now, some people need additional treatment, and in those cases the treatment is very intense, but for now, the current 4 X EP treatment WILL absolutely diminish my cancer. The only open question will be whether or not it will complete eradicate if from body forever.
Although this visit was possible superfluous (if was more for my peace of mind then anything) he absolutely wants to be part of the team that will assess my situation in June, once I've completed treatment. In late June I scheduled a follow up PET scan and I will see him on July 2nd. Also evaluating will be the surgeon that Dr. Motzer recommends for the possible Retro peritoneal Lymph Node Dissection. (Interestingly the very first RPLND was performed at Sloan Kettering in the 80s, as we found in an information kiosk in the lobby.)
Dr. Motzer also said that, in his experience, the first round of chemo is often the most difficult. The only account that I heard where each round was more difficult, was that blogger who just finished (in another words a sample size of one). Motzer has supervised probably 100s of patients through this treatment.

So, if having the stomach bug and everything else that was happening, plus it being naturally more difficult; if that makes this first round what it was.... Well, then I can totally do this.

Steroids

2009-04-14T03:02:00.004-04:00

OK, not to go all PSA on you all, but don't ever, ever, put a steroid in your body, at least without, I don't know, 24-48 hours BEFORE you plan on, I don't know SLEEPING.

Just don't put this shit into your body people, unless you really, really need to.

I'm willing to work with a certain physiological component of this treatment; understand some weird dreams and thoughts in the middle of the night but I don't need a visceral physical FLIGHT OR FIGHT crazy bullshit at 3 am.

It's hard to deep breath and focus on incoming and outgoing breaths when each breath crescendos uncontrollably from the previous as a quiet but unrelenting circular saw seems to work away carving on some probably important part of your brain.

Here, want a sample? You don't but I'd like to try writing (exorcising) it.

It occurred to my sleeping brain that I should bring my children to treatment and show them the needle entering my arm and explain to them in great details I can't recall now how the Etopiside is getting revenge for...UM, for what exactly?

OK, head demons, exit head, enter blog, dissipate into Internet as bot net herd or roving malware or SPAM and crash other peoples stuff; not mine.

Everyone, else, please just enjoy your chemically unaltered sleep. Thanks for listening. At least I'm not nauseous.

UPDATE (April 18, 2009). Sorry everyone for this bizarre post. When I got to post it I had spent the previous hour struggling to settle my mind down and I was having a really difficult time. My thinking was that if I just wrote what I was thinking perhaps I could stop ruminating on it. I didn't even re-read; just write and post. Thankfully it worked. Once I went back to bed I was able to focus on Renee's peaceful breathing (focusing on my own had not worked well earlier) and I eventually fell asleep.

For three days after treatment I need to take the steroid 2X a day. I had been taking it in the morning and at 3 pm. On that night I forgot and took it at 8 pm, a mistake I won't repeat in the next round.

As it was explained to me, the steroid is able to amplify the effectiveness of the anti-nausea medicine; certainly a good thing.

Lost Days

2009-04-13T14:39:00.006-04:00

We're still in the trenches of this illness. Not cancer, but the stomach bug. Renee is in the throws of it now, while the kids are on the road home.

I've been able to put a couple hours in here or there today, helping to feed or mind the kids, which is progress.

We managed to do Easter right too, although it was a bit of smoke and mirrors of sorts. We did about six hours of normalcy and celebration, begging and borrowing energy from before, and taking a big loan out of yesterday afternoon and today, upon which we're still making payments.

Our daughter got to wear her new outfit, both kids hunted for eggs, families visited, and we managed church, although we were all low on energy by the end.

Once we got home is when it became difficult again. Renee was feeling the onset and kids needed to sleep. My daughter's stomach was bothering her so she was more difficult but went to sleep after a couple attempts. My son was doing pretty well and finally slept.

Then it was all dark in the house for a couple of hours for all four of us.

Around 6 pm, way too late, I got the kids up. If was a big muddle through; most of us couldn't remember what meal we shoudl be eating let alone if the sun should rising, setting or staying put. We struggled through, eventually enteraining, cajoling and manipulating the kids to do what we needed them to do, until it was blessfully again time to settle them down for the night.

Today we awoke after a relatively quiet night to my daughter being OK, but having litterlly no energy because of the pittiance of sustained calories going into her body. She was sick of being sick, but afraid to really eat much. As anyone who knows her, she's usally full of energy, so it made me sad to see her suffer.

Fortunatly now, I seemed to be the best shape, (except for my son, who is 100% in his little world) and I was able to allow Renee a couple of hours here and there for herself.

Except for an hour or so mid morning I was able to work with the kids and eventually get them to nap, which they are doing now.

I hope that Renee can recover overnight, and we can start feeling like a normal family.

I keep thinking of the same tired new story they do every year on New Years day, about the poor crews that wade into Times Square each year early morning on January 1. I think of all four of our immune systems, working, chasing after these bits of infection, with their sweepers, blowers and sometimes simple poker and bag. At first it's an overwhelming mess, the infection running rampant through the body, wreaking havok on all the systems, but eventaully, given time, and darkness and patience, the streets begin to open again, and traffic begins to flow normally, and soon Times Square is again a working piece of busy and energetic Manhatten.

Day 6, Rest Day

2009-04-11T15:06:00.002-04:00

What a week is has been. Round 1 is over.

There is a whole lost post here, about my scheduled (but home administered) post-chemo shot of white blood count "super colony", which name I can't remember, and about the odd feelings it gave me right in my bones, because the bone marrow was forced into a super productive mode. And how this shot supposedly costs around $2000, and it's a good thing we didn't know that when Renee gave it to me after reading the instructions, because we didn't need the extra pressure.

Further, somehow the production of this stuff if is derivative of E. Coli, which sounds like a plot from the latest installment of Resident Evil.

UPSTATE (Monday Apr 13th) Anyway, maybe it did it job. Either that, or Renee's heroic effort to keep the kids away from me when they were most infectious, or my obsessive hand washing, or the massive amounts of anti-nausea medication I'm on; but I don't feel like everyone else did. Not that I felt great, but at least it didn't feel like I was fighting both the chemo after affects and the stomach bug too.

Renee

2009-04-11T14:47:00.002-04:00

My god, what a dark 24 hours it has been.

At 2 pm yesterday, as I was wrapping up my treatment, Renee called home to check on the kids, mostly wondering how my son was coping with his illness. Renee's cousin told us that my daughter was now vomiting.

We were quite a zombie army now. Me on day five of chemo, my son down for days and my daughter newly sick. My wife, stressed, tired and worried. My wife's cousin, at our home with a five month old of her own and two sick under 5 year olds.

We got home at 2:40 pm or so and I headed to bed. Renee sent Lisa home.

I fell into a semi-waking haze in my bed as I listened to Renee cope with every kind of human waste, protesting children, cleanups of germy messes and sterilization, filthy laundry and endless demands on her time and energy.

At 4/5/6 pm, I'm not sure, Renee called for me to help with my son as my daughter had another bout of nausea, it literally hitting as lighting and thunder starting rumbling in the night ski. I minded my son as she again did what she had to do and then she came and asked me if it would be OK to have her mom come.

Words escape me but Renee has the most amazing grace of God within her. She is the strongest women I have ever met in my entire life. She's probably make me edit this post after she reads it because she is also so modest. But she is really the core and the root of this family and I could not do this without her. I thank God everyday for her.

And now, even now, in this situation, she was literally asking permission to call for backup. I said, "yes, absolutely" get her here. Renee called her house, and then her dad's cell. It was a bad connection and at some point Renee repeated "get mom here", trying to get her dad to be able to hear her. He finally replied through the mutually bad connection: "she's already on her way". Renee hung up the phone, and not three minutes later, the door opened to Renee's mom saying "Babcia's here". SHE HAD ALREADY BEEN ON HER WAY.

If my daughter inherits half the compassion and instinct and fortitude of these women then I cannot ask for more.

Renee took my daughter to a hastily created pediatrician appointment as Renee's mom minded my son. I retreated back to bed. Again I semi-wakedly listened as Renee's mom now managed my son and his needs, however messy, disgusting and unpleasant, feeding him, bathing him, comforting him and getting him ready for bed.

At around 8 or 9 pm things stabilized a bit. Renee returned, her mom left, and she settled the children to sleep. At some point she somehow she managed to feed me a fresh delicious shrimp and rice dinner. AND I'M NOT EVEN JOKING.

I'm in awe just reading and recreating it now.

The night passed with me in my bed, and Renee in with my daughter in her room. The worst seems to be over for my son, but he still needed be changed at 2 am. My daughter had a couple incidents during the night which Renee managed to handle.

We spend the morning quietly, eating lightly, all very low energy and impact. Now in early afternoon, everyone is sleeping, Renee included.

Day 5

2009-04-11T14:42:00.004-04:00

Friday began smoothly despite the fact that my son has been fighting a stomach bug and we were all concerned that the whole house would get it. Further complicating things slightly was the good Friday holiday, which meant that both doctor offices would be closed and we'd need to be at the hospital for my treatment. Because of the new location Renee wanted to be with me to help me get setup. It was also an early start because of the hospital schedule: 7:30 am.

Fortunately Renee's cousin Lisa agreed to come by at 7 am with her four month old daughter to watch our children; a significant sacrifice considering many things, including potentially exposing her daughter to illness on Easter weekend.

Once at the hospital we had a lucky break. On my very first day I met a nurse at the Fairfield office; she was the one who placed my first IV. Her name happens to be Renee also, and it being an uncommon name Renee and I reacted everytime she was paged, which was frequently. She was clearly a well respected resource.

On the way to the hopitsal Renee even hoped that Renee the nurse would be a Bridgeport Hospital and she could perhaps place another good line for the day. That was our break. Renee (the nurse) was there to hand delivery my hospital order from her house to the hospital and she even agreed to do the line despite the fact that she wasn't working. If was really great to see a known competent face in the new setting.

Once settled, the hospital nurses were also very good and made sure I was very comfortable for my treatment. They used a slightly different protocol; very by the book, but I felt like I was in good hands. I was nearly done, about 2 pm, when things started to go off the rails, but not for me, for our family, which deserves its own post.

Anyway, one round completed. Now, two weeks of whatever may come until it's time for round 2.

A Return to Positivity

2009-04-09T21:57:00.002-04:00

Here is why it's all worth it.

I asked my friend Gary, who's polishing off his doctoral thesis in Epidemiology, while working with his Masters of Public Health to research a study that my doctor at Sloan Kettering told me about my current course of treatment.

(Reminder, I'm a seminoma pure germ cell, considered a good-risk, receiving four rounds of Etopiside and Cisplatin)

Here is an excerpt from Gary's email:

It was a clinical trial with 250 seminoma and non-seminoma metastatic germ cell tumor patients comparing cisplatin to carboplatin with the endpoints being complete response, relapse, and toxicity. The abstracts basically said that cisplatin and carboplatin have the same success rate, however there is more relapse and toxicity with carboplatin. So cisplatin is the chemo of choice (gold standard) now. I can get you the abstracts if you want. But since you asked about follow-up for these patients, I'll tell you what I found. They did a follow-up paper of this study in 2005 (which I was able to get a copy of) to look at long term outcomes for the patients treated with cisplatin, and they added in any additional patients since the original study that were treated with cisplatin (which is now the gold standard treatment). This is what they found:

PURPOSE: To assess response, overall survival, and relapse-free survival of patients with good-risk metastatic germ cell tumor (GCT) by International Germ Cell Consensus Classification Group (IGCCCG) criteria treated with four cycles of etoposide and cisplatin (EP). PATIENTS AND METHODS: Two hundred eighty-nine patients with IGCCCG good-risk GCT were treated with four cycles of EP. EP consisted of four cycles of etoposide 100 mg/m2 and cisplatin 20 mg/m2 on days 1 to 5 every 21 days. RESULTS: Two hundred eighty-two of 289 patients (98%) achieved a complete response; 269 (93%) responded to chemotherapy alone and 13 (5%) responded to chemotherapy plus surgical resection of viable disease (GCT other than mature teratoma). Seventeen (6%) experienced relapse, and nine (3%) died as a result of disease at a median follow-up of 7.7 years (range, 0.4 to 21.1 years). Sixty-two of 204 patients (30%) with nonseminoma had findings of teratoma or viable GCT at postchemotherapy surgery. CONCLUSION: Four cycles of EP is a highly effective therapy for patients with good-risk GCT, with a high cure rate, low relapse rate, and little evidence of late relapse. Postchemotherapy surgery resection of residual disease remains an important aspect of treatment for these patients. Four cycles of EP is acceptable as a standard regimen for the treatment of good-risk metastatic GCT, and serves as an alternative to three cycles of bleomycin and etoposide before cisplatin.

My summary:
So overall they found that 98% of patients achieved a complete response (with either Chemo alone - 93%, or Chemo plus surgery - 5%) with the same regimen that you're now on. There was only a 6% relapse rate in the mean 7.7 years of follow-up. In the paper they stated that 14 of the 17 relapses occurred within the first two years after chemo - so it appears that the first two years after chemo are the most important for continued intensive surveillance.

So what does this mean? Well, a 98% complete response rate coupled with a 94% relapse-free rate are probably some of the best numbers you'll ever hear when it comes to cancer (heck, any disease really). The more I read on this, the medical field has moved away from trying to figure out the best way to cure this type of cancer and is moving toward trying to figure out the way to cure it with the least amount of toxicity. That's always a good sign.

Let me know if there is any more info you want.

Gary

Reference info:
Kondagunta, G. V., Bacik, J., Bajorin, D., Dobrzynski, D., Sheinfeld, J., Motzer, R. J., et al. (2005). Etoposide and cisplatin chemotherapy for metastatic good-risk germ cell tumors. J Clin Oncol, 23(36), 9290-9294.

Sounds pretty good to me. I think Thursdays will be hard. Each day is a bit harder then the previous one, but at least when I finish on Friday, I know I have a two week rest. (Although we'll see tomorrow.) I already know from reading that I may just begin to feel better around when it's time to begin the next round; which only makes sense because pressure on me equals pressure on the cancer, and they want to keep chasing it as soon as I can handle it.

Day 4

2009-04-09T11:32:00.002-04:00

I hate to bitch but this is starting to suck. I so badly wish today is Friday. In fact I've already told three people it is only to be corrected.

I also know that in round 3 or 4 I'll perhaps read back at this a laugh or sneer, saying you had no clue back then what suckiness really is.

And in truth nothing is bothering me significantly. Any one sympton is pretty low level. I'm quesy, not nauseated. I'm tired but not exhausted. I'm swollen but not annoyingly so. My appetive is there but not great. Hair is hanging in there.

But it's a long friggen list of minor things! I'm normally so healthy that I'm big baby when anything is off, let alone half a dozen things. It feels to me like jet lag mixed with a hang over.

Well there, I've said nothing productive or useful. This is the first blog post that I don't feel better having written.

Anyone know any good jokes?

Tomorrow I'll be at Bridgeport hospital because of the Good Friday holiday. I doubt I'll have Internet access but I'm not sure.

Lot's of love to everyone who's reading and for the great feedback.

Day 3

2009-04-08T14:20:00.003-04:00

Another smooth day. I had to switch arms as the original peripheral IV line had left the vein and I was getting some swelling. Almost everyone here has a port, but I really don't want one. My feeling is that with a two week break in between, I'll heal enough for PVC to continue to work.

My first day was in the Fairfield office and there they have the catheter type that last 2-3 days. Yesterday and today I was in Trumbull and when they switched arms today they only had a single use catheter, which means they'll be piercing me again tomorrow.

I think I'll do Mondays in Fairfield for each cycle so I can limit the amount of times they have to find a new vein.

Another wrinkle for this week is that with the Good Friday holiday all the offices are closed so on that day I'll be at Bridgeport Hospital. It means a 7:30 am start and a longer wait with a bit more bureaucracy.

But hey, whatever it takes.

Day 2

2009-04-07T18:13:00.004-04:00

It was another relatively smooth day today. I continue to meet people, each with their own cancer stories.

I had a minor headache during the infusion and have some fatigue but we were also awake with our two year old last night, who has a stomach bug. I won't be immuno depressed for another week but I'll be washing my hands often and maintaining some distance regardless.

Two days down; feeling good being on the attack.

Initial Discovery - Feb, 08

2009-04-07T10:41:00.018-04:00

This post is really for the guys. Ladies, if you're concerned for your S.O. , you can send them this link. This is the story of how I found out I had testicular cancer.

The morning of February 8th, 2008 was like many others. It was a Friday and the kids started making noise in their beds around 6:30 am. Around 6:45 am I sat up half asleep and absent mindedly itched an itch on my scrotum. Still being quite drowsy I don't remember what exactly caught my attention but something caused me wake up completely in order to more closely check my left ball.

Towards the top I felt a strange ridge. The closest description I've come up with for its shape and size was the cap on large acorn. The ridge had about the same relative dimension and shape of the cap as compared to the rest of the testicle.

The other change which was more alarming to me was the change in sensation. As we all know the testicle is extremely sensitive to even the slightest pressure. And while I won't say the raised area wasn't sensitive at all, it felt fairly numb considering the area we're talking about.

By this time I was out of bed and sitting in a nearby chair and completely awake, full of adrenaline. I had this overwhelming sensation come over me. I felt simultaneously nauseated, in a cold sweat and very lightheaded. Something felt really, really wrong.

Renee came back in just then and I told her as much. She said: "well, if you're worried about it, call the doctor." Simple as that.

I called my primary care physician and he could see me the following week. Being a Friday I didn't want to spin my wheels all weekend so I made another call.

The first five years of my career I was at GE's global headquarters. This facility is full service. Gym, hair salon, TV studio, all on site. They also have a medical center with several physicians that only see GE employees.

While I worked there I did the IT setups for some of the large remote meetings that GE did for its executives. There was a whole team that handled all aspects of these meetings: food & beverages, travel, meeting space coordination and local medical emergency coverage. The team is consistent over the years and since we travel together we had more then one meal together; we got to know each other fairly well.

So mid morning that day, for the first time in over five years, I called the GE Fairfield on site MD that I had done meetings with before and told him what I found. He told me to come in as soon as I could for physical exam.

After he did his examination and asked the questions he needed to, he was also concerned. He led me to a private office to call Renee, and he returned to his office to make some phone calls. After 15 minutes or so he came back and told me he had arranged an ultrasound of the testicle. I asked him what time the appointment was and he said it was as soon as I could get there. He also gave me the address of an urologist. That appointment was for after the ultrasound but was also "as soon as you can get over there". I felt very well cared for.

Within six hours of the initial discovery I had confirmation that I had testicular cancer, which, while a shock, it was good to know asap. I also learned about how curable it is, especially with early detection. The tumor was about 1.7 cm at its largest diameter.

Apparently many men find these things and often wait months to discuss it with anyone, hoping it'll go away. Often all it takes is a mention to our often more practical better halves to get the process started, but the lesson here is to not wait.

By Tuesday the next week (Monday was a holiday - president's day perhaps) I was scheduled for an orcheictomy. They like to move quickly because testicular is a fast growing tumor. Also, even if the tumor was found to be non cancerous, they still would remove it. A biopsy is not done because there is a risk that during the biopsy some of the cancerous cells could be "spilled" into the third space within the scrotum which,as previously mentioned, the lymph system would pick them up and move into the lymphatic vessels.

The decision is also clear because, well, we have a full backup in the second testicle. The second remaining testicle will even eventually double its production of everything once its partner goes offline.

I was asked if I wanted to sperm bank but with two kids already I decided not to. Even without sperm banking there's still a good change I would avoid infertility, but they give you the option as a precaution. I could see someone with no kids being interested in protecting for the future, no matter how small the risk.

Being diagnosed with TC is a shock. But that initial "you have cancer" is the worst part. After that, much of the following news is good. Yeah, you lose a nut; no one want any scalpels near there. But you have another, and after a while you don't even thing about it. Also, it can be cured. In many cases the orcheictomy is all the treatment you need. But if you need more, both radiation and chemo are very effective.

One big reason why Lance Armstrong's story is so dramatic and remarkable is in fact because he waited so long to report his symptoms. By the time it was identified it had spread to his lymphatic system, his lungs and eventually his brain. But even in his case, as you probably know, he was able to win another Tour de France after getting a lot of the same chemo I'm getting.

It's a variation on the NY subway and airport signs: if you see something, say something. In this case: IF YOU FEEL SOMETHING, SAY SOMETHING.

Day 1

2009-04-06T14:53:00.010-04:00

I don't really have much to write. It was a bit anticlimactic really. At least so far the side effects are mild and nothing unpleasant...slight flushed feeling and a bit of very minor lightheadedness. That and stomach butterflies, which are probably nerves more then anything else.

A few answers to questions asked by you:

They've started me on the anti-nausea medicine already, including one that includes steroids.
So far they've decided not to use a port, thinking that based on my age and my veins they wouldn't need one, at least for now.
I have wifi Internet access (and I have a feeling I'll be helping other patients get their laptops connected in the days to follow)

Attached is a picture of the infusion suite. This morning it was more crowded then it is now, and everyone was very friendly.

Of course it's impossible to know for sure, but because TC is the most curable cancer I feel that most of the others here receiving treatment will be here longer and have a more challenging road ahead. One of the woman that was here just finished her 52nd week of chemo! She kindly offered her prayers but I was thinking "thank you but please, don't worry about me! I only have twelve weeks and I am working with a 90% cure rate!" Of course instead I said "thank you" and I will think of her and everyone else in my own thoughts.

One of the most wild thing about my treatment is the active ingredient. The most important ingredient in the chemo is platinum. Yes, exactly the same stuff in jewelery, but mixed with a lot of saline. After this is done I'll have more bling then any rap superstar. Just mine will be on the inside.

Now Commencing,

2009-04-03T07:47:00.005-04:00

Well, it's in the calendar. I start treatment on Monday. Three months to power through and kill this thing. Eradicate it. I like this word for this situation.

I will be doing a total of 20 days of treatment. The 20 days are separated into four rounds, with each round having five days of chemo, Monday through Friday. This is followed by two weeks of rest before the next round begins.

If all goes according to plan, this means that by June 27th (coincidentally my 35th birthday) I will be at the end of the forth cycle.

After the forth cycle I will get another PET scan, and they'll assess if the chemo was effective. They will also make a final decision on the surgery.

The quote goes that "the cancer is fine, it's the cure that gets you", so I feel that on Monday I will move from the psychological phase (fear, uncertainty) of cancer onto the physical phase (actual symptoms and side effects). Right now the hardest part is the huge unknown that chemo represents. Starting Monday that will change as I begin the road to this cancer's eradication.

Your Response and Its Impact

2009-04-02T17:12:00.001-04:00

I just want to post a public thanks to everyone who has posted, emailed, messaged, and called. There have been a million offers of prayer, support and "tell me if there is anything I can do". That last question is self-fulfilling: by sending your prayers, staying in touch or supporting us in general you all are doing something that is very powerful in itself. It is something for which I'm very grateful.

PS: Many of you have asked about Renee, and how she's doing. You are wise to do so because we're certainly going though this together. I won't speak for Renee (I know better :-) but I will say this: she's been amazing. Not that I ever had any doubt, but she meant the "in sickness and health" part. She's been helping me to eat well, sleep well and do whatever she possibly can to help me be successful, and she's doing that now, but has been doing that since day one. I hit the wife lottery, and it was the powerball (that's the really big one, right?)

Another TC Blogger

2009-03-31T15:16:00.002-04:00

While on http://www.tc-cancer.com/forum/ I came across another blogger who just finished chemo: http://seminoma.wordpress.com/ I can't say it's recommended reading for myself; he vents a lot about the effects of chemo and I wasn't ready to read all that I did.

Anyway, it's interesting to know that others had the same instinct to write and publish what was going on with them.

Also, I enabled anonymous commenting. I didn't realize that by default blogger makes commenting tricky. Hopefully it should be easier now.

Biopsy Update

2009-03-31T11:34:00.002-04:00

I just spoke to my local oncologist and the early reads on the biopsy was that it is a seminoma. The final report will be available tonight, and the slides will be overnighted to Sloan for their review, but barring any surprise this was what we were hoping for.

Seminomas are quickly killed by cisplatin, and with a seminoma and a post treatment negative PET, I would not need the RPLND surgery.

UPDATE: Yale pathology filed its final report and it's a pure seminoma. The slides are being overnighted to Sloan tonight.

This Thing Growing Inside Me

2009-03-30T12:01:00.009-04:00

My second tumor is on my Retroperitoneal Lymph Node. You can go down a whole hyper text wikipedia fueled rabbit's hole if you're so inclined, but here is the crash course as it relates to my situation:

In a similar way to the circulatory system, the lymphatic system is a series of vessels throughout your body. We most commonly think about our lymph nodes or "glands" when they're swollen from a cold or infection, primarily in the neck and throat area. However, there are these glands in multiple places in our body.

The lymphatic system's primary role is immunologic. It is responsible for creating the antigens that are part of an immune response to an infection.
The lymphatic system also helps remove the fat and fatty acids that can accumulate in the 'third spaces' (the space between our organs within the torso.)

From wikipedia:

The study of lymphatic drainage of various organs is important in diagnosis and treatment of cancer. The lymphatic system, because of its physical proximity to many tissues of the body, is responsible for carrying cancerous cells between the various parts of the body in a process called metastasis. The intervening lymph nodes can trap the cancer cells. If they are not successful in destroying the cancer cells the nodes may become sites of secondary tumors.

Source: http://en.wikipedia.org/wiki/Lymphatic_system

Biopsy Update

2009-03-26T21:11:00.002-04:00

Quick note - had my biopsy and it went smoothly. The results should be available on Monday.

I'm Pregnant? No, hCG Levels

2009-03-26T18:17:00.002-04:00

Funny moment when I went for a recent blood test: the receptionist took my name and details but then got a very uncomfortable look on her face. I assumed she couldn't find my record in the computer or my test order. So I asked a few questions when she answered awkwardly.

Finally she looked at me and said that she had found everything fine, but there had to be some mistake with the tests ordered. She looked directly at me and said, "a pregnancy test has been ordered for you" and gave two wide eyed blinks.

I laughed pretty hard and explained. The presence of a germ cell (testicular) tumor can secrete a hormone known a hCG (Human Chorionic Gonadotropin), so it's part of the typical panel of test for someone with TC. However, hCG's proper role is either supporting a fetus in a pregnant women or in developing female breasts in puberty. This hormone is detectable in the urine of a pregnant women and is used home pregnancy pee tests.

A lot more women have blood tests for pregnancy then men do for testicular cancer, so the receptionist was very, very confused. :-)

On a side note, people are also surprised when I mention I have cancer because of my age. Many cancers strike in later years but this is not the case with TC:

Age - Young men have a higher risk of testicular cancer. In men, testicular cancer is the most common cancer between the ages of 20 to 34, the second most common cancer between the ages of 35 to 39, and the third most common cancer between the ages of 15 to 19.

http://www.tc-cancer.com/signs.html

The Patient Self-Advocate

2009-03-25T16:19:00.009-04:00

When discussing the US healthcare system, I think all us Americans have heard many times over in recent years about being your own best health advocate.

I've heard this and thought about it but wondered what that it really meant and how to put into into practice. It only recently became clear to me. When you're healthy there isn't much to it, but when you become ill, that's when it really becomes apparent.

After my surgery, my surveillance protocol was a monthly blood test and a chest, abdomen and pelvis CT every three months for a full year. At the time I did feel quite strongly that my cancer was gone after surgery, but I understood that surveillance was important enough to go through the motions. I got into a nice monthly routine when, a few days after the scheduled test, my local oncologist would call me for a few minutes and tell me that the results were back and everything was more or less normal. He'd call me on my cell, usually during my workday and I barely interrupted what I was doing.

They'd also ask me before the scan if I wanted the results to go anywhere else, such as to Dr. Motzer at Sloan. I'd decline, feeling that there was no need for the big guns.

On one of the last days of 2008 I had a scheduled CT scans. Sometime just after new years, I got the 'all clear' call from my local oncologist. I've since learned that the December CT showed something; it just was of a size that made it ambiguous. It was small, and it could be normal tissue that had just changed, but (paraphrasing the radiologist's entry in the report) the possibility that it was a tumor mass could not be excluded. The ambivalent mass was also right near the lymph node where you'd expect something.

So it's probably obvious by now but the question is this: would a good patient self advocate have asked for a copy of each report, and tried do decipher each one? The answer is yes. Did I? No. Do I wish I had? For sure.

Now, realistically, in even a years time, it most likely won't make a difference. Chemo now or chemo then, the cure rate is essentially the same. Also, Monday morning quarterbacking makes this seem like a bigger miss, but the lesson is clear.

People in the health care system are, well, people. They make mistakes. And no matter how seriously they take the Hippocratic oath (and the vast majority of them take it very, very seriously) no one, NO ONE, cares about you and your health as much as you yourself do.

Going back to the December radiologists report, short term follow up was recommended. I had another CT scan in three months. Does that meet the definition of "short term"? Those are things that I will be judging for myself going forward, and discussing with my doctor.

Know Thy Enemy - Sun Tzu

2009-03-25T15:55:00.006-04:00

Tomorrow at 10:30 AM I'm scheduled for a CT guided core biopsy at an outpatient facility in Stratford Conn. As mentioned earlier the purpose of this biopsy is to determine in my new tumor is seminoma or nonseminoma. Again, seminoma is better (less aggressive, hates chemo more) and a second seminoma is more likely then an unexpected turn to nonseminoma.

In either case, the cure rate is in the 90s, percent wise, but a nonseminoma would require at (new acronym warning) RPLND or a Retroperitoneal Lymph Node Dissection, a surgical procedure to remove the affected lymph node.

While the recovery from my oriectomy was oh so pleasant, I'm not looking forward to an even more invasive surgery (that's what they say...I can't think of anything more invasive, psychologically, then the I/O I had in Feb '08.)

Scheduled to start at 10:30 AM, the procedure takes about an hour and I'll be awake, but they'll give me something to keep me mellow (Ativan, which I believe I remember fondly from my knee surgery in '03.)

I was speaking to my friend Gary today about wanting to start chemo so that I could put the tumor on notice that it's been found out. He pointed out something that I really liked: this poke of the biopsy needle will definitely get its attention: 'we know you're there, and we're coming for you'.

"If you know the enemy and know yourself, you need not fear the result of a hundred battles. If you know yourself but not your enemy, for every victory gained you will also suffer a defeat. If you know neither the enemy nor yourself, you will succumb in every battle."

Sun Tzu

I know myself, and with every test I know more about my enemy.

For the Facebook Inclined

2009-03-24T14:59:00.004-04:00

Anyone on facebook, you may now join the group "I know someone or I am someone who had the balls to fight Testicular Cancer" because, well, if you know me, then you qualify.

I found lots of happy stories there of people who were where I am today, but are now are happily cured and going on living their lives. In many cases there are stories of TC survivors welcoming new offspring into their lives. I'm fairly certain Renee and I are done having children but it's nice to know.

Memorial Sloan Kettering Visit - The Tidbits

2009-03-24T10:43:00.008-04:00

Unlike the previous post, here I'll talk about some of fluffier stuff (that is, as fluffy as it gets when talking about cancer) from yesterday.

My favorite part of the day was being right. How often have you disagreed with someone you're close to, and you both feel really strongly about your position, and you've wished that you could summon the perfect expert to jump in (again, because you know deep inside you're right?) Ideally that expert would have credentials so unassailable that both parties would have no choice but to accept their judgement as final. Sound ideal? Well it is sublime :-)

Over the last few months, I've had various tightness in my back, probably either sitting wrong at my computer or overdoing it at the gym. Usually stretching helps. But in the last 3-4 days, I've had a much stranger pain in a odd place just on my left side, and no amount of stretching did anything for it. It showed up just after my tumor was found and I thought it might be related.

But no, said she who shall remain nameless (aka SWSRN). SWSRN claimed "it probably not your tumor, it's too small" or "perhaps it's stress, people carry stress in their body in different ways" or "it could be psychosomatic". Well, during my interview with the nurse, I located and described the pain, even teeing it up as "probably nothing". She noted it down and finished.

The doctor came in next, after having just reviewed my CT results with the tumor pictures.

Then BAM, he said that where the tumor was growing, it was impinging on the space where there is nerve bundle attached to Teres Major back muscle. He then he pointed on his own back to where pain might occur. It was an exact match to where I was feeling my pain. End of discussion, victory Ted!

On the flip side I now have a near constant physical reminder of my tumor.

The other interesting part was the PET scan. It was a GE made Discovery LS PET/CT 600 which actually records the image in High Definition. I've met some of my fellow employees that worked on the software for this scanner.

In addition to having to drink the milky contrast, I needed an injection of a radioactive isotope, but I was surprised how it was packaged. The tech/nurse brought it in a 6" x 3" x 3" box with a handle. She said it weighted 25 lbs. The box itself was about 1 1/2" thick, probably made out of lead and inside was the syringe, which also had a cylindrical lead shield around the barrel. Crazy. I was also told not to hold my children for the next 8 hours due to the radiation!

Fortunately my mother-in-law was home with our kids so we were able to stay in the city and get dinner at one of Renee and my favorite NYC restaurants, so I didn't see my daughter and son until this morning, when I was no longer "Father Nuclear" (not to be confused with Rabbi Nuclear ;).

Memorial Sloan Kettering Visit - The Facts

2009-03-24T10:41:00.003-04:00

Yesterday several things were confirmed during my appointment at Sloan Kettering:

I will require chemotherapy.
There is a 90% chance that chemotherapy alone will diminish this new tumor and push the Cancer into remission if the tumor is a pure seminoma.
I will need a CT guided needle biopsy to determine if this new tumor is a seminoma or a non-seminoma.
If it is a non-seminoma, which is unlikely, in addition to the Chemo I would need surgery to remove the lymph node. In that case, with the surgery, I still have an ~90% chance of a full recovery
I will lose my hair. The doctor we saw said that he's only seen one TC patient receive either indicated treatment and not completely lose their hair.

My original tumor was a seminoma. Both tumor types share two attributes: they both are very fast growing tumors, and they both respond very quickly to chemotherapy. However, of the two, seminoma grows less quickly and is killed more effectively by chemotherapy.

The timing was a bit of bad luck because I normally see Dr. Motzer, who is a world renowned abdominal Cancer expert, but it just so happened that he is doing his only annual two week required rotation of inpatient care (meaning he only see hospitalized patients). Due to his seniority, he's only required to do this once a year whereas other doctors in his practice are required to do 16 weeks of inpatient care each year. I just happened to need to see him during this time.

Despite this, he has already been consulted and will advise on my case, I just didn't actually see him when I was onsite.

Next I had a PET scan, which is a nuclear imaging technology that can show the biochemical activity within the tumor. The PET scan now will be used for two reasons. One, it will serve as a guide for the biopsy, allowing them to harvest cells from the most active part of the tumor, providing the best opportunity for analysis. Second, it will serve as a "before" or baseline picture of the tumor that will be compared to the "after" PET scan that will follow the full chemo course and will help gauge the effectiveness of the treatment.

I also had an EKG, which they'll compare to an EKG after chemo.

The next step is, pending some clarifications from Dr. Motzer, to schedule a biopsy. Ideally the biopsy would be done at Sloan, but the Sloan biopsy unit is extremely busy with the most challenging schedule, so it may be done in Greenwich or Bridgeport. After the biopsy is completed then decisions about chemo will be made.

Sloan Today

2009-03-23T22:12:00.000-04:00

Renee and I just got home finally and we're exhausted. We learned some interesting things but nothing earth shattering, which I'll share tomorrow. I also had a (GE) PET scan while there. More tomorrow.

chemo details

2009-03-23T09:54:00.000-04:00

Details on the two courses of chemotherapy being considered (thanks Renee):

The two protocols (EP and BEP) are essentially identical in terms of cure rate. They are different in terms of length and possible side effects. The BEP protocol uses less Cisplatin and Etoposide, but uses Bleomycin. Bleomycin can cause lung fibrosis in older patients (over fifty) and can be a problem in patients with extensive lung metastases or existing lung problems. Etoposide can cause leukemia many years down the road (at the levels given during standard chemo, the risk is less than 1 percent.) and Cisplatin can cause neuropathy and hearing loss, so there is some impetus to reduce the number of cycles of these drugs. Which should YOU choose? Well, you usually won't be asked. These protocols typically vary from hospital to hospital. Memorial Sloan Kettering strongly prefers EP while Indiana University prefers BEP. If you have any concerns, please discuss them with your doctor before starting chemotherapy...

End quote 1

Etoposide (VP-16, VePesid): administration is via intravenous infusion over at least 30 minutes. Severe hypotension (low blood pressure) may occur if the drug is given too rapidly. The drug may also be given via pill form. Although this drug is not considered a vesicant (as Daunorubicin and Doxorubicin are), extravasation should be avoided.

The principal toxic effects of this drug are bone marrow suppression. However, nausea and vomiting, and anorexia (loss of appetite) can occur although associated more with the oral administration of the drug. Other adverse effects include hair loss (alopecia), headache, fever and low blood pressure. There have been some reported cases of cardiotoxicity including heart attack and congestive heart failure. Rarely (3%), neurotoxicity has been reported. This has consisted of fatigue and sleepiness and more rarely the development of peripheral neuropathy (tingling and numbness of the hands and/or feet). Lastly, there are some indications that this drug may increase the risk of developing leukemia (leukomogenic), which varies between 2-12%.

Bleomycin (Blenoxane): administration may be either by the intramuscular, intravenous, intraarterial, subcutaneous or intracavitary route.
Side-effects include severe febrile reactions (high fevers); skin reactions (increased coloration- hyperpigmentation) as well as skin inflammation and swelling and thickening of the nail beds. Hair loss, itchiness and headache are also potential side effects. Cumulative doses greater than 400U are associated with increased risk of pulmonary toxicity.

Cis-platinum (Platinol): administered intravenously. The patient should be well hydrated prior to administration of the drug. It has been shown that administration in the face of poor hydration increases the likelihood of developing side effects. In patients with kidney dysfunction, impaired hearing, preexisting peripheral nerve damage (neuropathy) or past history of allergies to platinum this medication should be given (if at all) with extreme caution. Side effects include nausea and vomiting, anaphylactic reactions (consisting of fast heart rate, wheezing, lowered blood pressure and facial edema), kidney damage (nephrotoxicity), decreased hearing
(ototoxicity), nerve damage (neurotoxicity; peripheral neuropathy) manifested by tingling and numbness of the hands and/or feet, bone marrow suppression with increased risk of bleeding and infection, electrolyte (sodium, potassium and magnesium) disturbances and possible heart toxicity (manifested by EKG changes) may be seen. It is important to discuss these issues with your physican so that you may inform him/her of any symptoms, which may be attributable to the use of this drug.

The Weekend, the Wait

2009-03-22T21:17:00.001-04:00

This weekend has been really difficult, and definitely the most difficult days since I spoke to my oncologist on Wednesday. I felt OK on Thursday and Friday as I had things to do; work to clear, appointments to make, paperwork and medical records to circulate, phone calls to make, but with those contacts closed for the weekend, I struggled. I kept busy, seeing my parents, seeing friends, starting this blog, playing with the kids, but I want to start getting better, taking the concrete steps that will get me closer to starting chemo.

The first step towards that is tomorrow. Renee and I will be taking the train to Manhattan to Sloan Kettering to be seen by the experts there. Back last February I visited Sloan in order to get a second opinion on my best course of post operative treatment, so it's a return trip for us.

The outcome of this trip will be the definitive plan for my treatment over the next 2-3 months. It's going to be chemotherapy, but some details are up for discussion. There is an eight week, three ingredient option v. a 12 week, two ingredient course, and there are other baseline tests that may or may not be needed: PET scan, biopsy, kidney function test to name a few. But from the couple of consults I've had, everyone acknowledges that the doctor I'm seeing at Sloan is THE guy for testicular cancer and will have all the latest and greatest thoughts around its treatment.

My Cancer and Why I'm Writing About It

2009-03-21T15:10:00.001-04:00

I've written this post mentally six times since I decided to blog about my cancer, but now that I'm actually sitting down to do it I can't remember any of it. I guess I have a lot on my mind.

I'll start with the facts. In 2008, on February 8th, a Friday, I discovered a lump on my testicle. (I'll go into more detail on the discovery in its own post, skipable for those not interested, and there for those that are).

By the following Tuesday it was on the operating table at Bridgeport hospital for unilateral oriechtamy .

After surgery, I had to decide between three treatments: radiation, chemo or surveillance. Surveillance basically means that there is no additional treatment per se, just regular monitoring (in the form of CT scans and blood tests) for additional tumors. I elected for surveillance (I'll also share my reasoning, later).

Four days ago, on March 19th of this year (2009) a CT scan on my pelvis showed a 6 cm (2.4") growth on the lymph node that is the arch typical next stop on the testicular cancer metastasis express. I am now contemplating my next steps.

So why am I writing this all down? Why is this blog called "Die Cancer Die"? Well because "die die die you fucking parasite how dare you fucking try to kill me cancer" would have made a really long domain name. That and I'm a 34 year old with a beautiful life, and wife and kids and I have testicular cancer, and that cancer is going to die. I am going to kill it and definitely not the other way around. (This is not false bravado, Testicular Cancer is the most curable Cancer, and I thank God for that.)

I'm writing this because I want the people around me to know what's going on, so that when I speak with them we're more or less caught up.

I'm writing this because it's better and easier for me if you know the facts of my situation when we interact so that you and I are both more comfortable.

I'm also writing this so I can read it, when yes, I'm better and I want to reflect on and read the words that describe how I felt as I worked my way through treatment and recovery.

I'm also writing this, because, yes, I wouldn't mind hearing from you, if you're so inclined.

I'd also like to educate people about TC, because I certainly didn't know much about it myself a year ago, and like any Cancer early detection is key.

Finally, I'm writing this for others that have TC or other cancers, because I've found it helpful to read other people's stories, when I've found them, so perhaps someone who is going through something similar will get something out of reading this.