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.

All Clear

Today was Zane's follow up with his surgeon.

All is well. Dr. P did such good work that he took out his digital camera and took picture's of Z's tummy so he could show other parents how quickly the scars heal and how minimal they look, just after 2 weeks!

We in turn asked to take Dr. P's picture with Zane:

You many not be able to see, but Dr. P he is wearing a South Park tie.
Seals the deal for Frank, this guy is the bomb!

And yes, Zane is holding his head up unassisted. Stronger every day!

After an incredible quick visit (in and out in 10 minutes--must be a record for "hospital time") we zipped over to the cancer box to deliver the following pictures taken on Tuesday when Frank had a blood test.

At the Cancer Box, Nurses Julie and Rhonda were very excited to see him again. These are the pictures we took them. He is turning into quite the flirt.




























He's had a busy week. Monday night the church threw a baby shower for us. He was, as always, a really good baby, sharing smiles and coos equally. Here he is the next day all sacked out on his grandpa's lap. It takes a lot of energy to be so cute!

















The Rev.

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).

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.

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.

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.

Another anniversary

A year ago today, I was lying on an operating table in Indianapolis while a very good surgeon sliced out a lymph node chock full o'teratoma. Time flies when you're having fun! Today, the scar looks OK, although the top part is a bit uglier than the bottom part (my guess would be that several of the urology interns took turns stapling me back together after surgery, and some did a better job than others). It's by far the best $25,000 ever spent on me.

Life goes on. Hallelujah.

Coming soon on DVD!

[Fade in...]

Pathologist: "It's cancer."

[Dissolve to...]

Pathologist: "Sorry, I was smoking crack, is isn't cancer."

[Cut to title with voiceover]

Announcer: "Who cares what the hell it is?"

It's

Frank's Thoracoscopy!

Check it out on video (it's in four parts, this is part one of four). No, it's not my actual surgery, but a close facsimile thereof. Although not for the squeamish, I happen to find it very cool.

Anyhoo, yesterday was the follow-up with the thoracic surgeon. Very uneventful, although after looking at the chest x-ray that was taken right before my appointment, that chunk of lung he took out seemed a lot larger than I had previously visualized (even though it was probably only about 2% of my total lung tissue).

A nurse took my BP and said, "119 over 72. That's awesome!" I smiled smugly at The Rev., who proceeded to roll her eyes so far back into her head that I did in fact see her optic nerves.

Awesome? Well, yes, but I already knew that.

Oh, in answer to the question I had the other day, the doc said they got the chunk out by deploying some sort of bag with a drawstring around the specimen, then cinching it tight before taking it out through the thorascopy port. (They had deflated my lung in order to operate on it, using a breathing tube and a ventilator to keep my right lung working. The lung tissue folds easily when deflated.)

Part four of the video shows how this happens. The diseased area is isolated with staples and removed from the rest of the lung, then placed in a bag to avoid contamination of other areas of the chest cavity. Cool!


At the end of the day, I was sent home and told the surgeon didn't need to see me again. I felt like I had been spurned following a one-night stand. It was the same story I had heard from my urologist as well as the surgeon who did the RPLND. Why are these surgeons so afraid of commitment?


Back to surveillance!

More fun in CT land

I went back to the Cancer Box for my first post-lung surgery CT scan today. They had me pre-medicate this time because of the hive that continually shows up on my forehead during CTs after the iodine contrast is injected, so I was well-doped up on Benadryl when I came in. Guess what - it didn't help a damned bit, the hive showed up again, and all I got was a sleepless night to add to my cranky morning since I couldn't eat beforehand. Still, I managed to make a new hat for the occasion... Those are CT contrast bottles taped to my hat, by the way - the smoothie that tastes like artifically flavored berries mixed with dirt in a creamy white base. The proper medical term is "barium sulfate suspension". According to Wikipedia, other uses for barium sulfate include paint pigment (it replaced white lead) and pyrotechnics. Just thought you might like to know. I suppose it could be worse - sometimes the barium sulfate is given by enema rather than orally (usually for colon and small intestine studies). Anyway, the CT looks good - you can now see staples where the mass used to be. We also got the pathology opinion from IU; they agreed with the local folks that the mass was teratoma and not active cancer. Hot dog! We're back on the surveillance schedule. Like Dr. V. said, it was just a speed bump. Later in Dr. V.'s exam room, fabulous nurse G. scored me some breakfast from a buffet that had been set up for employees. Eggs and sausage - SWEET! Plus, nurse R. from the chemo room came by and got to satisfy her picking jones by pulling out some suture parts from one of the thoracoscopy ports on my left side (the sutures were popping out and keeping the wound from healing completely). Apparently the nurses all have their own wound fetishes. Nurse G. didn't like the picking at all, but apparently she totally goes wild for pus shooting out of an abcess. OK, that was probably TMI, but welcome to my world. Afterward, I asked for copies of all my paperwork from this year so far so I can start building my next FAA file. They farmed it out to a woman from the medical records room, who came out with the copies and said something like, "Wow, I actually get to meet Mr. Vinny!" Apparently my hats have made me some sort of legend (in my own mind at least). OK. It's now time for a nap. Tuesday we meet with the thoracic surgeon so he can look at me and say, "Damn, I do good work!" What I want to know is this: the wedge they pulled out was about 6 x 5 x 2.5 cm (the mass inside was only 1.2 x 1 x 0.9 cm). The ports (i.e., cuts) for the scope are only about 3 cm. How'd they get that chunk out? Have a great weekend!

Woods. Again? Yes.

So, we’re not out of the woods.

Remember back in April 05 when we were surprised to hear that Frank had a dot on his lung that was “unchanged” and we didn’t even know he had one to change? At the time the doctors determined it was probably nothing, but vowed to keep an eye on it; if it changed then they’d do something about it.

Well, Frank went yesterday for his 4 month CT/blood work check up. Good news: tumor markers are not, I repeat are not elevated. However, said dot has grown from .9 to 1.35 cm. As far as Dr. V is concerned that is in the wrong direction. So, it will come out; how is yet to be determined. (When will that Star Trek technology be made real so they can just “transport” the bad stuff out?)

Frank has a PET scan (Positron emission tomography scan) on Friday afternoon to determine if there is anything else in his chest that needs to be addressed while the surgeon is inside him. Monday morning we will go see Dr. V (the oncologist) and Wednesday we will go to visit a thoracic (meaning related to the chest) surgeon here in town to inquire about the surgery (when, how extensive, do we need a 2nd opinion?).

In other words in the midst of other big huge life plans: Frank has re-entered “the zone”. It’s that place where he finds out as much information as he can about the options available to him and he sets the course for treatment to cure. (He’s even looked up the different types of surgery this may require—because as my mom said, he needs to know so he can let the doctors know what they should do.)

When in the zone Frank is determined and focused. When he’s there I try real hard not to “spin” or go into “hover craft mode”. Wish me luck. The surgery (because he’s shared with me too the information, because there is a part of me that will want to be in the OR helping) could be as simple as a few incisions, done in laparoscopic fashion called video-assisted thoracic surgery, or he could have an incision from his arm pit to his waist line. Either procedure means a stay in the hospital from a few days to over a week. BUT, do need to say that this information is not based upon my discussion with any surgeon, just what Frank is finding out in "the zone" and relaying to me.

All I have left to say is: I’m gonna be really happy when he stops this habit of collecting scars! This silly competition with my mom has GOT TO STOP.

The Rev.

those darn inquiring minds...

In answer to the questions raised by Vinnys last post--'cause I just can't bear to leave you hanging--

Said nursing student evidently was "overwhelmed" (remember the patient also had antlers that he was shaking at the doctor) by the port-a-cath scar (about an inch wide above his right peck) and the insignificant 14 inch line running from his sternum into his underwear zone and did not initially recognize the tiny extra milk spout.

There was also all his hair...

;-)

You wanted to know......

Merry Christmas!

the rev

Yet another boring follow-up visit

Had a CT done yesterday along with blood draws. BORING! About the most excitement I had was when being examined by Dr. V: he brought in a nursing student to see if she would notice my supernumerary nipple. So add that to my list of party tricks (although this one isn't cancer related).

We talked a little bit about the Raynaud's I'm experiencing, but that's about it. Anything he might prescribe to help would make me loopy and would be verboten as far as the FAA is concerned, so I decided to pass. We'll see if I acclimate to the cold temperatures at all. It's freakin' cold today - it's 7 degrees this morning, with a chance for us to make 18 by the evening. I bought a new pair of insulated gloves yesterday to see if that would help.

I neglected to bring in a hat - I have a Santa cap with battery-operated Christmas lights that would have been perfect for the occasion. Fortunately, the phlebotomists in the lab lent me a set of reindeer ears with bells. When Dr. V. was doing his exam I shook my head and said, "You're making my bells jingle!" He decided to bring in Nurse Gay to document any further harassment I might initiate.

Keep on truckin'

Had my first post-RPLND CT today, as well as labs. Sarah started freaking out last night, "What if there are spots in the pictures? I told her, "Well, then I guess I'd be a leopard." She stopped talking about it after that.

As for today's pictures, they look good now that the "cancer leftovers" have been removed. Everything looks stable, including that one-time potential trouble spot in the lower lobe of my left lung.

Honestly we did more chit-chat w/ Dr. V. and nurse G. about life in general than talking about cancer; nice to feel mostly back to normal...There was of course that damn bump on my head that showed up about 5 minutes after they started pumping the contrast dye into my veins. So wonderful feeling like I'm wetting myself while my head sprouts a horn. They both chuckled at Sarah's comment regarding the cruel nature of removing a man's testicle and then surgically placing an arrow (the scars) on his body to point out the fact that it is gone. This is quickly becoming her favorite TC joke, but it makes me a little “testy” (which is her second favorite TC joke).

We did talk Dr. V about getting "Harry the Bastard" (the port-a-cath) out and he agreed it would be OK, so that'll be the next exciting thing. The best part about getting Harry out is that I can finally quit the coumadin I've been taking daily for the last 6+ months.

But, of course, I couldn't just give up one medicine without starting another now, could I? The neuropathy has been causing me problems at night, especially when trying to sleep, so I'm starting on Neurontin, which won't do anything about the numbness but will stop the pain receptors in my extremities from firing at random like they do presently. Hopefully this will help, and hopefully the neuropathy will eventually ride off into the sunset. The drug isn't cheap, even as a generic ($75 for this round, but I'll go the mail order route after since it's quite a bit cheaper), but if it helps it will definitely be worth it.

IU Redux

Well, I think we've made our last medically related trip to Indianapolis. I like the city, to tell the truth, and I could see myself living there -- there's lots of things to do and it's not as crazy as the "big" cities out there. Anyway, we had one more round of visits with the gurus at IU Cancer Center. Dr. Foster said I was healing very well from the surgery. We also met Dr. Einhorn (the man, the myth, the legend) for the first time. What a nice guy! Very friendly and unassuming, although I will say that his picture on the IU website is a bit out-of-date. Sarah resisted the urge to prostrate herself and kiss his feet in adoration and was content to thank him profusely for pioneering the chemotherapy regime that saved my life.

We also took some pics at the Richard & Annette Bloch Cancer Survivors Park next to the IU Medical Center. As I was making this entry, I discovered that there are multiple versions of this park all over the country! All of the parks have been made possible by the R. A. Bloch Cancer Foundation which is based in Kansas City (Mr. Bloch was the cofounder of H&R Block). Who knew?

We were told that I had maybe a 10% chance of teratoma returning, and a very small chance that the cancer itself would come back. Dr. Einhorn also suggested I could get rid of "Harry the Bastard" (my port-a-cath) if I wanted. I'm giving serious thought to the suggestion. It's not like I need a constant reminder that I'm not out of the woods yet. If I do have a recurrence of the active germ cell cancer that requires additional chemotherapy, I can always have another port put in. I think I'm willing to take that risk if it means asserting my freedom from cancer.

We returned from Indy to find a letter from the FAA telling me that while I couldn't get a regular medical certificate because of my history of cancer, I would be able to get a special issuance certificate. This basically means that I can return to flying, but will need to update the FAA annually on my condition for the next five years or so. I think I can handle that! I'll be scheduling my first post-cancer solo flight as soon as I can.