Forum Family Fix 2009 and its aftermath

The TC-Cancer online support forum had its annual get together on July 4th in New Jersey. I hadn't been to one before, but since we had extra mandatory vacation days tacked onto the holiday weekend, I decided to make the trek (just me this time, next time it will be a family affair).

What a blast! Probably about 30 survivors, supporters and kids came and we partied until the wee hours of the morning. New friends were made and old friendships were renewed. It's a group of folks who, were it not for the connection through testicular cancer, probably would have no reason to meet and talk. As one of the participants shared:

I can't help feeling like everyone here is very much an extended family to me. I'll never be happy that cancer entered my life. But I can't help feeling very fortunate indeed for having found so many beautiful people, each so unique and special, because of it.

For me at least, there wasn't a lot of emotion connected with our gathering at the time, just folks having a good time. Then there was the next day.

I was in New York Sunday morning to kill time before my flight. I was dropped off in Midtown (about 56th and 6th Ave) with another couple from the group who was staying in the city for a couple of extra days. So I was walking down 5th Ave and passed a Presbyterian church. I found myself wondering, "maybe there's a Methodist church nearby..." so I whipped out the phone and did a search. Boom, there's Christ Church UMC at 60th and Park Ave, about 8 blocks from where I was. And, as it turned out, they had a service starting at 11 (it was about 5 past at the time). I hauled a$$ over to the church and took a seat near the back, about 10 minutes into the service.

The Scripture readings for the day and the sermon were all about being strong in our broken places. The preacher also quoted from Maya Angelou's poem read at President Clinton's first inauguration: “History, despite its wrenching pain, cannot be unlived but, if faced with courage, need not be lived again." It dovetailed so well with the sentiment expressed at our gathering of those touched by testicular cancer that I found myself overcome with emotion. Joining in the celebration of communion just took the emotion to the next level.

After the service, I basked for a while in the beautiful weather in Central Park with a sense of grace, peace, and serenity, thankful that I have been blessed to join a group who have been able to help me (and many others) find strength in a time of weakness. Can't wait for the next one!

Flipping cancer the bird

And another...

Say hello to Reese and Cara. Reese was on surveillance but recently started 3xBEP after a CT showed activity in his retroperitoneal lymph nodes.

And another blogger...

Meet Ted, who had his orchiectomy in February 2008 and has just started chemo for a mass found on a CT.

Good luck Ted!

Another member of the club!

Please welcome David, from Atlanta, to the TC family! He starts 4xBEP on Monday.

Please Support me in the ACS Walk & Roll

Hey all - I've signed up to take part in the American Cancer Society's Walk and Roll fundraiser in Chicago next month. I'm trying to raise $5,000 for cancer research, advocacy, and patient support. It's very easy - no gift is too small! You can donate online with a credit card by visiting my fundraising page and clicking on the "Click Here to Sponsor Me" button above the thermometer. Or you can go straight to the donation page by simply clicking here.

Thanks for your support!

Author! Author!

Some of you may remember my escapade in the clouds shortly after I was able to start flying post-chemo. Well, I did some editing and submitted the story to AOPA (Aircraft Owners and Pilots Association), and the editors there said they would look at it. Many months later, I hadn't heard anything, so I figured they decided not to use my submission, but I asked anyway. Much to my surprise, I was told that AOPA intended to publish my story.

I was slightly disappointed that it wouldn't be published in their print magazine, but it was featured in this week's email newsletter to members. Here's the published version of the story. For the record, I was paid, so I guess that technically makes me a professional published author. That and three bucks can buy me a latte at Starbucks.

You'll never see this in the US

Yet another great PSA that would never make it past the moral guardians of our culture in the US...


Keep your eye on the balls.

Courtesy of Everyman (Institute of Cancer Research, UK).

New member of the club

Michael Sessions, the 19-year old mayor(!) of Hillsdale, Michigan (who apparently has to balance work and school), announced last week that he was diagnosed with TC and had an orchiectomy in late July. He's scheduled to have an RPLND next week.

Again, early detection was the key! Good luck, Michael - sorry you had to join our club.

A Cancer Related Post?

It's been a while, I know. That's good news! Boring is ok when it comes to medical issues. The Cancer Box has moved to a new location, so I'll be stepping into a brand new building when I go for my next CT in October. But I saw this cartoon in my New Yorker the other day, and I just had to share it.

Graduation

Had my first labs and CT of 2007, almost two years to the day after my first chemo infusion. Nothing new, nothing exciting. Just the way I like it.

Dr. V. moved me from a 2-month to a 4-month checkup schedule, with CTs every 8 months. So the next time I visit the oncologist's office, it will have been more than two years since the end of chemo and almost two years since my RPLND. That two year milestone is significant, as recurrences of non-seminoma significantly drop off after that time period.

I also got a fistful of "Cancer Sucks" buttons from the chemo nurses. They can be ordered through the National Coalition for Cancer Survivorship ($25 for a box of 100).

Giving Thanks

I received a solicitation from the Indiana University Cancer Center yesterday, and my first thought was, "Boy, I'd give my left nut to help find a cure for cancer!"

But seriously folks...

It's coming up on two years since my initial diagnosis, and Thanksgiving seems to be an appropriate time of year to reflect on where we've been in the last couple of years. If not for the intellectual curiosity of folks like Dr. Einhorn, I might not be around today. So the Rev. and I will be making a donation to further research at IU.

You can give to IU online through the IU Foundation, but it's a pain in the butt using this method to designate your gift for cancer research. The easier way to support IU cancer research is to write a check to "IU Foundation/Hem-Onc Gifts" and mail to:

Indiana University Cancer Center
c/o Indiana University Foundation
PO Box 663802
Indianapolis IN 46266-3802

Happy Thanksgiving! Follow the Rev. and I online tomorrow as we head to Atlanta.

Boring days and not-so-boring days

Another yawner at the oncologist's office today. That's my last visit for 2006. We'll try for a surgery-free year in 2007. Hard to believe we'll soon be marking two years from my initial diagnosis. Some of the folks who were going through TC when I started this have not been as fortunate as I have. Just this week I learned from my TC mailing list that two more folks from our ranks have departed this life and a third has begun palliative care. Sad, but life goes on.

On the less-boring side, our birthmom / adoption partner is planning to move to town this weekend. While we are encouraged by this development, it will be an exercise in proper boundary setting.

Happy Birthday TCRC!

Today marks 10 years (since folks first started counting) since the Testicular Cancer Research Center first made its appearance on the wild and wooly internet. In addition to being the home page of the TC-NET discussion list for TC-affected folks, the TCRC is also a great source of information for all things TC. The site gets an average of 800-plus hits a day from more than 170 countries around the world.

I found the TCRC in a flurry of internet research the night before my first trip to the urologist. While I was impressed with all the concise info, I had basically convinced myself at the time that it wasn't cancer and I would get a nice script for an antibiotic and everything would clear up in a couple of weeks. Well, you all know how that turned out. The TCRC has been great for me and I have recommended it highly to others new to the TC ride.

The folks who founded and edited the site are long-time survivors (10, 14, and 19 years respectively), and I plan to join those ranks eventually. For now I can just say thanks.

If you're really interested

There's been a couple of graphic things shared lately on the TC Cancer Forum that I regularly participate in. One of them is a link to the University of Virginia Health System's Pathology Department. They have a page that has in-depth discussions of the various types of testicular tumors. And there's pictures too! NOT FOR THE SQUEAMISH, GROSS OUT ALERT!

But even more fascinating was the sharing of a picture from one member's RPLND. While I had a 7x10 cm node taken out, another guy had a node removed that was 34x24x17 cm and weighed 8 1/2 pounds. His surgeon took before and after pictures. Here's the link to the discussion. You have to click on the picture links to actually see them. Again, major gross out alert.

Cancer in Comics

There's a web-based comic strip called "Innies and Outties" which I will admit is a bit weird, even for me. The main characters are children who seem to function as adults in their world, kind of a fantasyland of sorts. Anyway, one of the characters is a vegeterian zombie named Harold (the vegetarian part is important, otherwise he'd be eating the brains of the living, you know) who happens to be dealing with cancer in a certain area of his body. The writer never comes out and says it, but it sure looks like TC. Currently in the timeline of the strip, the zombie is undergoing surgery. I'm curious to see where it will lead.

Enjoy at your leisure. As I said, it's a bit weird, but there you are.

Check 'em Lads on TV in the UK!

Phil Morris and Mick Riley (of checkemlads.com fame) made a recent TV appearance in the UK to raise TC awareness. Go lads!

The roller coaster continues.

Life marches on. Frank had a CT and blood work done today. Based on some advice he received from other TCers, he mixed the CT contrast shake with some raspberry Crystal Light. When asked if it tasted better he said yes. However, he had to begin drinking it at 4:30am, so he may have been too asleep to even taste it. (Frank here: By the way, they tried using a different IV contrast dye today and there was no horn! The CT tech marked it on my folder and said in the future to make sure and ask for the "special sauce". Not sure I want to know...)

After the appointment he’s told me that all looks normal. Good. It’s good that one thing looks normal because so much of our life happens so fast that I don’t think I really know what normal really is.

We spent last week resting at Frank’s parents’ home. It was a good week. In addition to being able to be complete vegetables in a quiet space (who knew that sleep deprivation began only three days into having an infant at home?), we also got to spend time with children who will be in our lives for a long time.

The triplets (our niece and two nephews) that I baptized at the end of July had doubled in size. One of them was beginning to recognize that there were other babies in the crib with him. It is amazing how fast they grow. My nephew who turns 2 this week was ok with his mama not being around and Frank and I got to bond with him while he watched train videos that Frank Googled on the internet.

I needed something to do with my hands and I started a cross stitch kit. My niece who has begun kindergarten helped with a few of the stitches as she was fascinated by the sewing part of it. I worked on it a lot, including during turbulence on our ride home. It is almost finished, but I fear that I will leave it unfinished as my life marches on and I don’t seem to be able to find (or to take) the time to sit down and just be.

Taking wise advice from one of the elders in Frank’s flight club, we mailed all the baby stuff back to MO before we left VA, so as to lighten our load, emotionally and physically. I picked the box up yesterday afternoon. It sits unopened in the baby’s room. I know that there will come a day when I don't think about Vincent. And then it will be a few days, and time will march on and there will be a small person in our life that will be the recipient of our love and affection and “Mini Vinny” will be a wisp of a passing thought. However, in the mean time, it is proving to be hard to sit at my desk, or even sit in a group and not have my mind wander to thoughts of him. Part of me wants to open the box to look at his hospital pictures; another part doesn't want to open that part of my heart open again. Such is grief. It just has to be muddled through. There is not quick route to get around it.

For the record we are ok and have peace that the baby is in a good home. But, worry is still in the back of my mind. In the state of Virginia the birth mom has 15 days to change her mind after waiting the 10 days before terminating parental rights; a total of 25 days at the earliest. The baby was born on August 27, if everything happened as soon as it could, that new family is still waiting on pins and needles until September 22 to be “in the clear”. Maybe that date will be a date of peace for me too, although we have no legal rights to know how or what is transpiring.
Trust and faith.

We will be attending the local Adoptive Parents Network meeting this Thursday night. If I had any doubts about our place/right/worthiness to be there (probably just some of those normal jitters when you are “new” at something), they are gone. While our time with Vincent didn’t end the way we hoped it would, we have entered the world of being adoptive parents.

Folks say being a parent will change your life. Some say it with a “Ha ha ha, you have no idea what you are getting into” look in their eyes. I think we do. My experience of this process is that there is a lot more thought and intention than that the "normal" way of starting a family. How many people do you know have to have a social worker come into your home do an interview, hire lawyers, wait for someone to pick you, and then have a judge approve that you are ok parents including that your house pet has had all of its shots up to date? (How does one give a fish a shot? Just kidding, no I have not gone out and purchased another pet.)

We are ready, we are still on the roller coaster that is adoption. I plan to hang on even though the ride may get rough. In the end, I plan on looking at Frank and saying, "What a ride, I'm glad we did it together!"

Thank you to all who have supported us, it means a lot.
The Rev.

Reason # 7,348

Reason #7,348 to thank Dr. Einhorn.

Ok, so I haven't actually sat down and counted up the reasons, but as I was driving in blinding rain to Wally World last night at 11pm on a quest for a pump to keep the water out of the basement I had two flashes of insight:

One, on the heels of being in NOLA it is interesting how big a little bit of water in the basement can seem.
Complaining is a leisure activity: it was late, we were tired, it kept raining, the water kept rising, and after not falling down for well over two years that I slipped twice on our concrete patio and scraped and bruised toe/foot/knee and my ego.
Perspective is a gift: so I may need to repack my grandma's dishes, but I also need to get them out an use them anyway, it's not like the entire basement was flooded 4 or more feet. (What a mess THAT would be!)

Second, (and the reason that I'm blogging) I'm sure glad I am that I don't have to face everything by myself. But it really is easier for me to have someone else sharing in the frustration of the situation. We fell into bed exhausted, resigned to the knowledge that there would be water in the basement in the morning, but we did it together.

Thank you Dr. Einhorn.

BTW: I have bailed that basement window well by myself before, it was a pain, but it was day light. 4 inches of rain fell in an hour that day. And I followed it with 2 hours of what I call the "Shop Vac Shuffle" in the church basement. The church has since installed pumps that worked very nicely last night where were got about 5 inches in total.

Re-entry

We're back. Five days of mucking out flooded houses and two days of driving, followed by July 4th to help smooth our re-entry into normal life. How was your holiday?

The devastation in New Orleans has to be seen with your own eyes (and in some cases smelled with your own nostrils) in order to be fully appreciated. There's really no other way to explain it - it simply defies description, and we're talking 9 1/2 months after the storm/flooding. Nevertheless, we'll post pictures soon.

Despite the seriousness of our team's task, we generally had a good time. The hospitality was wonderful, and the people were grateful. We listened to a lot of survivor stories, ranging from minor inconvenience to personal tragedy. Friday's work day was the hardest from an emotional standpoint - we were cleaning out the personal possessions of a house that had at least 8 feet of water, and the house was basically untouched since the storm. It was a day we needed to remind ourselves that our work wasn't futile, that it would make a difference to someone. It was a starfish kind of day.

The conventional wisdom seems to be that the rebuilding process will take 15-20 years, so we'll have plenty of opportunities to return and offer more assistance. I'll be back.

Meanwhile, the world doesn't stop or even slow down. I have labs and a Dr. visit next Tuesday, and yesterday we learned of yet another person in our church who's been diagnosed with cancer. That makes five twelve (according to the Rev) in the last two years, if my counting is correct, in a church with an average attendance of 110 or so. No rest for the wicked.

An open invitation to our guests

Things have been slow around here lately, so I figured I'd share this. Two researchers at the University of Kentucky are doing research on the use of new communication technologies, presently concentrating on how health information seekers, particularly cancer patients and their families/friends, adopt blogs.

They're asking visitors to take an anonymous and confidential survey. They believe the information gathered from this study will greatly contribute to our understanding of the adoption of new communication technologies by cancer patients.

To take the survey, click here. If that doesn't work, cut and paste the following URL into your browser:

https://wintis.mowsey.org/survey/

They may have some certificate issues with your browser. If you get a message, just continue on.

In other news, Annual Conference for Missouri United Methodists is this weekend in Springfield. This is the first time in the past three years that the Rev is having to go (two years ago we went on vacation, and last year I was busy having my RPLND). She was really banking on us getting an adoption placement in time for her to start maternity leave and skip yet another annual conference. No such luck. You can't win 'em all!