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

lazy days of summer

So, you'd never know it's summer by the thermometer here in Chicago. Seriously I hope we don't pay for this with a bitterly cold winter.


We've been busy, going to the beach in Fl (which also was not unbearably hot) for the 4th of July, hosting family and friends back here at home.












He loves to mow. Outside and in.























Zane continues to be a learning machine. He babbles away. Words are still not completely understandable, except for "truckKKKKK", but the sign language I've taught him has come in handy as he UNDERSTANDS a lot more than he can talk about.For instance, he know to sit down when he wants to play his rythm sticks, or have his shoes put on. Plops right down in fact. He really enjoys both.

He loves anything that has to do with water:

He loves to boogie, dancing to whatever music is at hand: a commercial on the TV, a song on the ipod, a passing car playing Latin salsa or rap music. He's got the music in him and it makes his daddy VERY happy. Me too, it's just plain fun to watch him spinning around to the music.

Last night we got to take in one of Chicago's many free offerings: a Bossa Nova concert at Millennium Park. We put a blanket out on the lawn and Zane made everyone around us smile w/ his twirling/dancing/flirting.

Slogging through Babyland

Well, Zane is just over a month old and has already made his first airplane trip (although I am a bit put out that it was in a cigar tube airliner and not with his Daddy in the pilot's seat). The Rev. and Zane visited her parents for a couple of days, then flew down today to visit my folks for the next week, as well as Zane's cousins (6 of them now, to be 8 later this year). For the Rev. it is a preview of our family's beach week this coming summer, where we'll have four toddlers ages 1 to 1 1/2, a 2 1/2-year old, a 6-year old, Zane, and 10 adults (one of whom will be pregnant with twins). Her assessment is that we should all sleep well because it will be pandemonium during the day. Eventually we may have a fun condo and a time-out condo, but this year it will be sheer madness.

So, I'm batching it with the dog for the next week. I plan to get some sleep, but I can't help thinking I'm missing out on the fun. Still, sleep is good. Next up for us is a trip to Louisville over Mother's Day weekend. It's the weekend after the Derby, so hopefully the city should be somewhat back to normal.

We're Back!

We are back from the beach and had a great week with Frank's family.
7 adults, 5 children (3@ 3.5 months, 1@ 20 months, and 1 who starts kindergarten soon), 2 condos, a pool and the ocean. We also got to meet the 7.5 month old who lives about an hour north of where we were staying. Then we all caravanned back to Atlanta for the baptisms of the triplets on Sunday morning.
What an amazing family I get to be a part of and what a blessing to baptize the latest additions! (I used a black shell that Frank and I had found on the beach Friday morning to do the baptism)
I have now had my "baby Jones" fired up and am getting even more ready for when ours comes home.
Thanks to all who held down the fort while we were away.
The Rev.

The Weather Outside

Yes, it is stupidly hot here this week. Temps over 100, with heat indices in the 110-115 range. It's also Vacation Bible School Week at the church, featuring an outdoor sand dune for "archeological digs". It looks a bit more like Death Valley than the Sinai, mainly because of some of the added "treasures": elephant femur, rhino skull, etc. Fortunately, no incidents of heat stroke thus far.

To add to the weather fun, Wednesday night St. Louis was pounded by intense storms that knocked out power all over the metro area. We got an early morning phone call from the Rev.'s parents:

"How much freezer space do you have?"

Apparently, their house will be without electricity for the next five days or so, and they have a treasure trove of frozen meat (that the Rev.'s mom bought off the back of a roving pickup truck, but that's another story) that needs a temporary home. So our freezer, and perhaps freezers at the church, will be filled up for a little while, and the in-laws will stay at the lake.

Meanwhile, we're going to the beach for vacation next week. My folks made an executive decision to switch from the Gulf Coast to the Atlantic Coast for a change of scenery (not to mention the fact that the Gulf Coast beaches have had to be replenished several times recently due to hurricane damage). We'll spend a week with the nieces and nephews (4 of whom are under a year old) then head back up to Atlanta where the Rev. will baptize the triplets.

No news on the adoption front lately, so we won't be adding any insanity (child-wise) to the beach mix this year.

Goofballs at the beach 

Sarah and The Niece 

Frank and The Niece 

The niece and nephew

The Nephew

The Niece

Vacation Good -- VBS Wild

Our beach vacation was good, not long enough (what vacation ever really is?,) but good.

One our way down we entered (unbeknownst to us) the airport triathlon: KC to Dallas, Dallas to not the beach but Houston, Houston to Destin, on a different airline altogether. Four differnt airports, three different flights, two different airlines, none of which corresponded to the tickets we purchased. At least we got there. Boy did we need to be there once we got there; it took two days just to relax from that!

And btw: Houston (International, aka George Bush) is not an airport I recommend flying into/out of/or through. Hot, really hot, and VERY POOR signage, not to mention that in transferring to a different airline meant having to go down two floors, back up two floors in a different part of the airport and then through security again. It may be hard to imagine, but I was, at the end of the day, actually happy Frank insisted that I not check any luggage.

The beach was good, family time was excellent. Our four year old niece is well into being a little girl and is quite the conversationalist. She is also drop dead cute when her hair is in pig-tails and she twirls her hair as she is asking you a question. And our 10 month old nephew is very mobile and had just discovered he can open and close doors. He crawled his way down the hall following the sound of his sister’s voice as she talked to me. And he is wild about balls. He can already (with both hands) throw a ball about 4 feet w/ good aim. Aren’t kids amazing?

Tropical Strom Cindy curtailed our outdoor activities on Wednesday, but my niece and I did arts and crafts all morning. I’m really glad that ink will eventually wear off and that her mom is laid back enough to not worry that I made her daughter’s hand dark purple…it did wash to a nice shade of pink, which is my niece’s favorite color. The sustained winds on the eastern side of the storm were strong and long lasting; I thought the windows would never stop whistling.

Thursday Frank got kissed by a sea lion at Gulf World. It was the highlight of his day. (natch)

Friday morning was a beautiful picture perfect Gulf of Mexico beach day. The waves, which had up until that day been huge w/ a strong riptide, were just lapping up to the shore. It was wonderful just hanging out in the water. And that would also be the day that I was least diligent in putting on sunscreen. The strips of burn are beginning to itch; I can’t wait for them to peel! Foil by Blistex is a great product to put on a sunburn.

Long story short we didn’t find out about the hurricane Dennis mandatory visitor evacuation declared at Noon on Friday until after we’d decided to leave Friday night at 8pm, a night early and drive through the night with the family back to Atlanta. That meant that Frank and I got to change our flight from Destin to KC (through Dallas, thank God not Houston) to Atlanta to St. Louis. A big thank you to my parents who picked us up at the St. Louis airport and drove us home on Saturday. I went to bed at 7 pm Saturday night and slept hard for 12 hours. Another thanks goes to my sister who turned around on Sunday afternoon and helped us get our car parked in the KC long term parking back home.

This week is Vacation Bible School, in the evenings. It is another busy year with over 75 kids in attendance! I serve a really neat church, people are very generous and this week is no exception. The church is elaborately decorated for our Serengeti Trek, lots of live green plants from a local garden center and from a member’s personal collection: animals from Africa: we have a giraffe in the sanctuary, neck up, it’s taller than the cross. Frank will take pictures b/c I know some of you will just not believe it unless you see it. Other animals lurking about: a zebra, an antelope, a warthog, a baboon. I can’t wait until Sunday when we celebrate VBS in worship!

This Saturday we send our Senior High Sunday School Class off on a mission trip and then Frank and I’ll head for a family gathering on the western side of the state.

Monday finds us traveling back to Indy for Frank’s post surgery check up w/ Dr. Foster and also an appointment w/ Dr. Einhorn. I think Dr. E likes to meet w/ TC patients who come through IU even if he’s not been directly involved in their care. Heck if it weren’t for him finding the BEP one-two punch of chemotherapy many men would not be alive today. I would like to shake the man’s hand, perhaps even prostrate myself at his feet to say thank you. And like all good research drs. my guess is that he wants to see what Frank’s experience was and since Frank’s tumor tissue now part of the IU research library on TC, perhaps they want find out if they could tweak treatment and or find a way to help prevention efforts.

It feels weird talking about it though. I guess that means that it is no longer occupying my every other thought. This is a good thing. It’s still a part of who we are, where we’ve been, but I am so DONE with it. I’m ready to have Frank back at 100% (he’s getting there) and for us to move on and live our lives. Here’s to the new normal!

And remember how stressed I was over him losing his hair? He’s decided to keep it short and had his 1^st hair cut since chemo yesterday!

From the wilds of Mid-Missouri, I hope all are doing well.

Peace,

The Rev.

A true vacation

I write this from the Hotel Savoy in downtown Kansas City as we prepare to head to the Florida Gulf coast for what I think will be our first real vacation since chemo started. We'll fly in to Fort Walton Beach where (hopefully) we'll be met by some member or members of my family for the drive to Seagrove, which is about the halfway point between Destin and Panama City Beach. We'll stay for a week doing absolutely nothing constructive, just slumming about in our bathing suits all day, trekking back and forth from the (rented) family compound to the beach.

Sarah and I look forward to spending time (further) corrupting our 4-year old niece, starting with a new book: Walter the Farting Dog. By the way, for those of you who don't know, the official motto of Sarah's family is "Fartus humeratus est [sic]". I heartily agree and have agreed since probably 1st grade - farts are hilarious! Not sure what my sister will think of our attempt to teach her daughter new and exciting vocabulary words (like flatulence), but I think she'll probably be too preoccupied by this latest round of shark attacks to care or notice. Our 9-month old nephew is mobile now, so I imagine we'll all be quite busy keeping tabs on the kids during the week.

Our ridiculous schedule kicks back into high gear as soon as we return. Vacation Bible School at Sarah's church starts the Monday after we get back, but before that on Sunday at church there is a baptism, a send off of the mission team and communion (the things Sarah thinks can be acomplished in an hour....), then the aforesaid high school students head out on their mission trip to North Carolina the following week. Meanwhile, I'll be busy at work churning out investment reports for the second quarter of 2005 (I worked about 5 hours on Thursday to build up my work "chops" a bit). We head to Indianapolis shortly thereafter for a follow-up visit with Dr. Foster and Dr. Einhorn at IU. Then, my brother is planning to come for a visit the next week.

By the way, I think I may have mentioned that IU wasted no time before sending out a bill for my RPLND. It was about $12K, which I thought was quite the bargain, so I wasn't really surprised to get a bill today from Dr. Foster for an additional $12K for his services. Again, I'd have to say it was money well spent, but thank goodness for insurance. On a curious note, the renewal for my medical insurance came in and only went up about 15% or so (which is about par for the course these days), so I was quite pleased (not to mention relieved).

Let me put in a plug for those of you who may be traveling to KC and recommend the Hotel Savoy. It's a stately old hotel that has been in continuous operation since the 1880s and has now been converted to a bed and breakfast. We've stayed here several times over the past 7 years and they are continuing to upgrade the digs (desparately needed upgrades, I might add). It's quite the bargain: for under $100 you get a king-size bed with lovely antique bath fixtures (the claw foot tubs are cool, but the individual hot and cold spigots in the lavatory take some getting used to) and a killer breakfast that should last you until at least supper time, if not later. You have your choice of a couple dozen items, from eggs benedict to lobster bisque to lamb chops to veal scallopine to Oysters Rockefeller to Coquille Saint Jacques (a scallops dish). It's not an either/or menu - you can order as much as you think you can stomach. The hotel also houses the Savoy Grill, a fabulous steak house that dates back to 1903. (They also now have wireless internet access, as I can attest.)

Meanwhile, we're off to celebrate Sarah's birthday, Spanish style -- with tapas! We'll check back in with a report from IU in a few weeks. Take care!