Live Life Live, Die Cancer Die

We’ve moved

diecancerdie — Fri, 05 Aug 2011 02:33:16 +0000

Two Years Clear

diecancerdie — Tue, 19 Jul 2011 16:54:08 +0000

I had my ‘two year post chemo’ test and scan last week and my oncologist confirmed via quick chat that it’s still showing no new tumor growth.

I have a proper appointment next week to discuss future surveillance schedules and to really understand the statistical significance of the two year mark. I’ve previously understood two years to be significant, but I’ll be listening more closely than before now that it’s here.

One Year Clear

diecancerdie — Sun, 11 Jul 2010 00:20:52 +0000

On Tuesday June 29th I got a call from my Oncologist, telling me that my recent CT scan looked “terrific”.

The conversation marked one year since I finished my Chemotherapy.

I will now get quarterly chest X-rays and a CT scan every six months.

The first two years carry the highest risk of reoccurance, so I’m halfway there.

Six Months of Remission Behind Me

diecancerdie — Fri, 26 Feb 2010 17:39:32 +0000

I saw my oncologist earlier this week for my (approximate) six month surveillance follow up. Based on a recent blood test and a CT scan from about a month ago, I’m still Cancer free.

When I started, two years ago this past February 15th, there was very clear consensus about how long I’d have a heightened risk. As part of the total population of those with Seminoma based tumors, there was enough data to make statistically significant conclusion about the period of likely re-occurrence.

Since then, with my second tumor and treatment choice, I’m part of an increasingly narrow population, and there is no concensus. So, it required some discussion, but we agreed to the following plan:

Monthly blood screen for tumor markers
Immedediate CT in case of any suspiciiously elevated blood levels
Otherwise, CT Scan of Chest, Abdomen and Pelvis every six months

That plan will continue for two years, until March of 2011, after which I’ll likely go to an annual CT and less frequent blood screens.

So, if all goes well, I won’t be posting here until September!

CancerCare’s Walk for Hope

diecancerdie — Thu, 20 Aug 2009 03:35:38 +0000

I continue to be extremely grateful to all of you for your help during the last four months. I’ve committed to taking all that kindness that I absorbed and returning it back to the world, and doing that in honor of all of you. Ironically, this means returning to the well (that’s you, people ).

In Fairfield on Sunday, September 13th Renee and I will be walking in CancerCare’s Walk for Hope, an annual CancerCare fundraiser. If you can, please donate, walk with us, or even just spread the word to others who might be interested. All the funds will be used by CancerCare to help other cancer patients in their fight.

So far we’ve raised ~~$595~~ ~~$645~~ ~~$745~~ $870 and added three team members, which is an awesome start. Many thanks to everyone who has contributed $$ and will contribute their time.

To donate yourself or learn more, please visit our team’s online home. (will open in a new tab or window).

More Info About CancerCare:

My cancer diagnosis had a huge emotional impact on me as well as my family. While oncologists treat cancer with great dedication, they just don’t have the resources to deal with even the patient’s emotional needs.

CancerCare’s mission is to fill that gap and more. Their services are available free; not just to the patient, but to the entire family or anyone impacted. What they offer is as varied and individual as what you can reasonable ask for.

Attitude is key to beating any illness, and CancerCare plays a major helping role in managing and staying positive.

Thank you, thank you, thank you

diecancerdie — Fri, 14 Aug 2009 05:58:51 +0000

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

diecancerdie — Tue, 07 Jul 2009 21:49:00 +0000

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

diecancerdie — Thu, 02 Jul 2009 19:44:00 +0000

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

diecancerdie — Thu, 02 Jul 2009 19:16:00 +0000

(11:18 AM EDT) On the 11:17 to GCT for my chemo results.

(Update 12:29 PM EDT) Arrived New York, walking to 68th & York.

(Update 01:28 PM EDT) Waiting, relaxed. Resigned to my fate. Waiting room is relatively empty. Could cancer be on vacation?

(Update 01:49 PM EDT) Waiting now in an exam room. Suddenly a bit nervous.

(Update 03:16 PM EDT) 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)

(11:18 AM EDT) On the 11:17 to GCT for my chemo results.

(Update 12:29 PM EDT) Arrived New York, walking to 68th & York.

(Update 01:28 PM EDT) Waiting, relaxed. Resigned to my fate. Waiting room is relatively empty. Could cancer be on vacation?

(Update 01:49 PM EDT) Waiting now in an exam room. Suddenly a bit nervous.

(Posted from my mobile phone)

CT / PET Scan Day

diecancerdie — Tue, 30 Jun 2009 20:36:00 +0000

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

(Update 07:58 AM EDT) On the 7:50 express to GCT.

(Update 09:10 AM EDT) Arrived grand central.

(Update 10:02 AM EDT) In the waiting room at MSKCC.

(Update 11:24 PM EDT) Drinking and shooting up (it’s not like it sounds; contrast fluid and radioactive isotope)

(Update 01:15 PM EDT) All done, super hungry!

(Update 04:36 PM EDT) “Bridgeport, bridgeport stop is next. Last four cars, bridgeport.”

(Posted from my mobile phone)

(Update 07:58 AM EDT) On the 7:50 express to GCT.

(Update 09:10 AM EDT) Arrived grand central.

(Update 10:02 AM EDT) In the waiting room at MSKCC.

(Update 11:24 PM EDT) Drinking and shooting up (it’s not like it sounds; contrast fluid and radioactive isotope)

(Update 01:15 PM EDT) All done, super hungry!

(Update 04:36 PM EDT) “Bridgeport, bridgeport stop is next. Last four cars, bridgeport.”

(Posted from my mobile phone)