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<tagline mode="escaped" type="text/html">Cancer highlights from Jon and Sheela</tagline>
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<name>Jon and Sheela</name>
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<issued>2005-01-04T18:56:00-05:00</issued>
<modified>2005-05-21T19:33:48Z</modified>
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<div xmlns="http://www.w3.org/1999/xhtml">Sorry for taking so long to offer another update, but I just haven't had much to say. The effects of the chemotherapy wore off a few weeks ago and now it takes some real effort to make my life sound dramatic. No chemo means that I have an immune system again, so I can face the seething masses of humanity at the mall without an ounce of fear! The nausea is gone and I've bravely eaten enough tacos to put on ten pounds! Hair is growing again so I've got extra bushy nostrils once more!<br/>
<br/>Jokes aside, I truly have returned to normal living. Barring a catscan gone wrong, my days of internet stardom are over. (Actually I'm quoted in this week's <a href="http://www.bostonphoenix.com/boston/news_features/dont_quote_me/multi-page/documents/04366122.asp">Boston Phoenix</a>, but that's not the point.)<br/>
<br/>Now that I'm done, I do have one last thing to say: Thank you. I want to thank everybody who has been concerned about my health and has taken the time to check in to see how Sheela and I are doing. It was her idea to start a newsletter and my friend Geoff suggested that I turn it into a blog. The creative outlet added some entertainment value, but the real reward has been the warm thoughts that all of you have sent our way. To hear from everybody and to find out how much people care made chemotherapy bearable.<br/>
<br/>Thank you.<br/>
<br/>
<img src="/images/20041231_newyear.jpg"/>
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<issued>2004-12-02T20:31:41-05:00</issued>
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<div xmlns="http://www.w3.org/1999/xhtml">Leading up to my appointment today Sheela was predicting that the doctor would say "all gone," like how a three year old will point to their plate after finishing the peas. She was close. My oncologist's actual words today were "Your scans look great."
<br/>
<br/>The big news today is that the cancer in my lymph node is gone, gone, gone. That means no <a href="http://www.tcrc.acor.org/rplnd.html">RPLND</a> surgery where I'd be cut open like a fish and in recovery for six weeks. This also means no fourth round of chemo. As for my lungs, the spots are the same as before the treatment so they might be tiny scars unrelated to the cancer. They are so small that there is no way to tell what they are so we may never know. The doctors will be keeping an eye on them and if they don't change at all then there is nothing to worry about.  We're confident that I'm in good shape because of my AFP blood markers. 
<br/>
<br/>So what does the future hold? As followup I get another catscan in six weeks and then again every couple of months for the next five years. Today was a big milestone because I successfully beat the big node, but there are more milestones to look forward to. The one year mark is a big one because recurrence usually occurs in that window.
<br/>
<br/>Now I get the luxury of worrying about things other than health. Apparently the adjustment from patient back to person can be a little complicated, but as my brother put it: "Jon, I have no doubt that you will exceed expectations and get wrapped up in the petty concerns of life in no time." Dana Farber is in the process of establishing a survivorship center tied to the <a href="http://www.laf.org/News_Events/News/pr-20040830.cfm">Lance Armstrong foundation</a> so there are resources available to help me figure out any mysteries. I also need to lose some weight; it was easy to justify an extra muffin when I was looking forward to intestinal surgery. Maybe I'll train for one of the <a href="http://www.ti.com/snc/roadrace/">Dana Farber fundraising road races</a>, in which case I'll be hitting up all of you for pledges. Yes, the future is bright: a return to worrying about silly things and soliciting my friends for money. Truth is I couldn't be happier. I get to be a normal person again.
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<br/>I have a couple more things to share with you, so please check in again before Christmas. Know however that the big hurdle has been crossed.
<br/>
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<issued>2004-11-29T20:10:41-05:00</issued>
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<div xmlns="http://www.w3.org/1999/xhtml">Today was my first day back at work at <a href="http://www.wbur.org">WBUR</a> and as far as Monday mornings go it was pretty easy. I was telling people that once normal gets taken away from you, the day to day grind takes on a whole new appeal. I took two months off, so I've missed a few things which were all <a href="http://www.bostonphoenix.com/boston/news_features/dont_quote_me/multi-page/documents/04176025.asp">detailed in the various Boston newspapers</a>. Despite the drama I like my job and I work with smart people and it's good to be back. It is a bit of a germ pit though so I am looking forward to having my immune system back at full strength.
<br/>
<br/>On the all important health front, this week I start to find out how effective the chemotherapy has been. I have a catscan on Thursday 12/2 and the hope is that the doctors will take one look at the pictures and have a definitive answer for me. "Go home! You're cured!" However I've learned that it usually doesn't work that way. Instead it takes time and one test leads to another and an answer develops over a few weeks. So I don't expect to know anything right away. In the scan the doctors will be looking at the cancerous lymph node near my kidney and the two spots on my lung to see how they have responded to the chemo. It's possible that everything will be gone and I'm done for now. It's possible that the lymph node has been reduced to a nub that will need to be surgically removed. It's possible that I need more serious surgery. It's possible that I'll need more chemo. There are a wide range of possibilities none of which are worth worrying about until I have more information.
<br/>
<br/>Something I have learned from Sheela is to only worry about what is real and to let the other stuff live in the distance. It's tricky because you can't ignore the other stuff or else you'll be in denial and get yourself in trouble when you need to be paying attention. I'm working towards the grasshopper full awareness/no anxiety mindset. Once I have that one fully figured out I'll invite everybody to a mountaintop and we'll have a party.
<br/>
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<issued>2004-11-22T07:33:37-05:00</issued>
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<div xmlns="http://www.w3.org/1999/xhtml">I have so much to be thankful for this year that I need to make a list. It's all feel good, so if you need a little spice before the sugar, check out <a href="http://www.inter-zone.org/thanks.html">William Burroughs' Thanksgiving Prayer</a>. Try that one out on the family before digging into the turkey! For my own benediction, I've got happy thoughts.
<br/>
<br/>1) Sheela. I get all the attention and she does all the work of keeping things going. Without her I would be sitting in a dirty apartment with no idea of how to approach the difficult parts of life. Instead I have a partner and we're taking on our challenges together.
<br/>
<br/>2) Friends and family. All the notes of warm thoughts and rides and little gifts that have been pouring in go a long way towards keeping my spirits up. I have soaked up the white light and have used that energy to keep my thoughts focused.
<br/>
<br/>3) Modern science and medicine. Before platinum chemotherapy for testicular cancer was discovered in the 1970s, the survival rate was 10%. These days it is above 95%. The good folks at Dana Farber are taking good care of me and I'm thankful for that too.
<br/>
<br/>4) An easy third cycle. It was as gentle as I could have hoped for. I had learned more about how to use the anti-nausea medication and the acupuncture definitely helped, but the luck of the draw had something to do with it. I've been eating lots and in good spirits all week.
<br/>
<br/>5) I get to return to normal soon. I plan on leaving my life of watching Columbo reruns and going back to work on Monday 11/29. My immune system is crawling back so I'm starting to go outside more. I've even got tickets to see the Pixies when they come to Lowell. I give thanks for good rock band reunions too.
<br/>
<br/>December will be a month of tests where I find out how successful the treatments have been so far. There is always the possibility of another chemo cycle or follow-up surgery, but at this point there is no way to know so there is no sense worrying about it. My blood tests point to remission, so that is where my head is at.
<br/>
<br/>In the meantime, enjoy some turkey and know that I'm thankful for having all of you in my life.
<br/>
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<issued>2004-11-16T14:18:38-05:00</issued>
<modified>2004-11-16T19:53:38Z</modified>
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<div xmlns="http://www.w3.org/1999/xhtml">From Sheela:
<br/>
<br/>There's little to report this week; the last five days of infusions have been rather routine. But this is very good. It seems like the combination of therapies have worked their magic during cycle three. Increased amounts of saline for hydration, intravenous feeds of anti-nausea medications and, of course, the ancient Chinese practice of acupuncture made this experience much more manageable. Jon's slept more peacefully, ate more steadily and, well, let's just say the stool softener is working, too. This is like a trifecta in the chemo world. He's still rundown, but all in all the third cycle is going as well as we'd hoped.
<br/>
<br/>The most noteable moment of the week happened on our way home from the hospital. If you recall from an earlier blog entry, <a href="http://howisjon.blogspot.com/2004/09/turtles.html">Jon and I tried to rescue a turtle </a>that was crossing a highway onramp. The turtle didn't make it. Last night on the way home we saw a rabbit running across the onramp. He made it; we think the speed helps. We'll keep our eyes out for chickens crossing the road, or maybe even some turkeys.
<br/>
<br/>What's ahead now are two shorter infusions, on Thursday 11/18 and Wednesday 11/24 and then tests and tests and tests to find out what exactly has happened. On the whole, it's looking good.
<br/>
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