Friday, October 29, 2010

The Valley of the Shadow

Well folks, the time approaches. Although not totally light and airy, it's not horrible either. I've got dates set for the ray amputation of my leftmost most offensive finger. The world will be a better place. :)

I'd tell you to set your DVRs but I'm pretty sure the surgery won't be on broadcast networks or cable. It's still going down though. November 15th.

It is the same day that back in 1492 Christopher Columbus notes the first recorded reference to tobacco (speaking of cancer, kids, don't smoke or chew). Also in 1904, King C Gillette patented the Gillette razor blade (I don't know if he also invented or made scalpels...). But that's not all! On November 15th in 1960, the USS George Washington, the 1st sub with nuclear ballistic missiles, launched. To top it all off, it's also the day, in 1969, that Wendy's Hamburgers opened.
Now add Eric getting a finger lopped off to the list in 2010.

I say "lopped off" which really is quite crass considering there are 3 days of prep work the week before that will include another MRI, anesthesia assessment, blood-work, and a consultation with Dr Lewis. So it's actually looking to be more of a very precise and methodical surgical procedure that hopefully I will be entirely unconscious for.

Brea mentioned to me that now there were dates set this whole thing got a lot more real. It definitely is real, but it always has been. So now is the time to panic...

I'm kidding! You weren't actually panicking were you? I'm not. I'm on some sort of path that's about to include some fun new challenges. It's time to suck it up and embrace the reality as whatever it turns out to be.

It will be a change of pace I can imagine, it's definitely the biggest injury I'll have suff... oh wait, I've been hit by a pickup truck and fallen 20ft off a cliff face. Ok, maybe not the biggest injury but definitely the most permanent. I was going to ask if I'd be candidate for one of those Droid fingers like in the commercials but I'm pretty sure they're all visual effects.

So for now and until mid-November I'm enjoying some things that might be a little difficult for a few months afterward. Drumming at church, camping, and making art with a 5-fingered hand.

I hope it will all go well but am preparing for challenges. Perhaps it will be a mix. :) I'm in good hands after all.

Wednesday, October 27, 2010

Consensus: Not political (thank goodness)


I'm a little late in posting this but here's what's been going on...

Those questions that we've been compiling were mostly answered back on Monday afternoon when I was able to talk with my doc on the phone.

The bottom line at this point is that what I'd suspected and been preparing for (the finger being taken off) is the consensus not just with Dr Adler and Dr Lewis, but with every other person with cancer experience that has been asked. I'm blessed to have very gracious and concerned friends and family who have made inquiries all over the place to see what other professionals and friends with experience think and all the replies have confirmed that taking off the primary location of the cancer offers the best chance of killing the disease before it gets out of hand. With that being said, of course there still aren't any guarantees, just probabilities. It's a somewhat somber reminder that despite all the stunning advances in medicine and science, there is still a whole lot we don't know about the human body. It's all based on experiments and practice and typically life throws curve balls because we just don't appreciate the complexities of our "normal" lives.
Right now I'm envisioning Sean Connery saying something along the lines of "Ha! You think you're so smart!"

Anyhow, I got off topic a little bit, sorry about that!

Questions and Answers
(I made notes, then came back and filled in with more complete sentences. The Doc talked really quickly... :D

1. Since we know the margins were not clear but the cancer has been down-graded is radiation on his finger a possible treatment to kill the remaining cells if we decide not to do the radial at this time? Is removing additional tissue but not the whole finger an option at all? (This one I know has been answered and I personally don't prefer it)
No, there isn't enough tissue, radiation is not an option. The pathologist conference concluded I am not a radiation candidate. Apparently it would just "fry" the finger and kill it.

2. Is there a likelihood of phantom pain? Or chronic pain in his hand?
It is not likely and is even less likely with a ray amputation.

3. In low grade sarcoma what is the recurrence percentage in other patients when initial site is not completely removed?
When the original site is not removed, recurrence is about 90% and tends to be either in the original site or the lungs.

4. Since it is considered a less aggressive cancer does that mean it is not as likely to metastasize?
It is not as likely but is still likely

5. If the ray amputation is done will other treatments also be necessary? Radiation, chemo?
No, not at this time. (Would change if cancer popped up elsewhere presumably)

6. Can we have the lower half of his body checked to be sure he does not have the misfortune of having another growth in a place that we have not looked at yet?
No. Apparently it would be in the lungs or in the finger if anywhere else.

7. How long would the surgery be?
About 2 hours.

8. How long is the healing process?
I should be able to get the hand out of the splint and move it after 2 weeks. It should be mostly functional at 6 weeks and fully functional in around 3 months after surgery.

9. The cancer was in his finger for over a year without spreading, what is the likelihood that it will spread now that the tumor was removed but the margins were not clear?
The likelihood would be low because it is low grade and the tumor was small but there is a chance. Usually a spread comes from a large tumor shedding off cells when it reaches a certain size.

10. Is there any reason radiation or chemotherapy isn't an equally viable option at this point while there are only small clusters of cells (presumably)
See answer to question #1

11. What is the stage of the tumor that was removed?
It is not relevant because it was a low grade tumor and there was no metastasis visible at this point.

12. How possible is it that it has already spread since it's been over a month since the initial tumor removal? How might that affect the treatment plan?
At this point, while it is possible, it's not very likely and as such, would not affect the treatment plan which is ideally removing the finger.

13. What is the recurrence percentage when the initial site IS completely removed?
Very low.

14. Would the "watching closely" include MRI, CT scan, chest xray, ultrasound, and bloodwork every 3 months? My understanding is that this would be the same with or without the ray amputation. Are there any more or less tests that would be involved?
I've already had an MRI (baseline MRI) so the watching closely would probably be just the ultrasound and chest x-ray every 3 months. No other tests would be prescribed at this point.

15. If taking the finger didn't close the gate, metaphorically speaking, what would the likelihood be that if it has moved up that you'd recommend taking more of my hand or arm, etc?
It is unlikely at this point because if it did wind up moving elsewhere, just about anywhere else there would be able more tissue to work with and complete removal isn't necessarily necessary.

Other things mentioned in the phone call:
If we sat and watched it, there is a higher risk of recurrence because the initial tumor removal was done improperly. Recurrence usually happens within 2 - 3 years and if nothing shows, one is usually cleared by the 10 year mark.

The next step is to contact the scheduler to setup the next appointment depending on our choice.


So I think I'm out of excuses for not scheduling the surgery. The main concern I have at this point that might be legitimate is the lack of a full body scan. Dr Lewis has been very clear that the sarcoma wouldn't metastasize anywhere lower without being in the lungs or lymph nodes but I still feel (possibly incorrectly) like she's not getting the concern that there may be something that just is/has-been growing somewhere else entirely and separately. Is there any reason why something like that wouldn't happen?

Anyhow, so for halloween I'm thinking I'll dress up like a UPS or USPS delivery guy with a box being sent to cancer and with a bloody finger inside. :) Also, projects like making some left hand prints and or some casts might be in the works just for the fun of it but who knows if I'll have time for that.

Thanks for all your prayers and encouragement! There have been times where I could feel some negative stuff trying to creep up and distract me from the big picture but it's being beaten back and I'm sure your interventions are playing a role in all that. I can't say I deserve any of it because I don't but it is very much appreciated!

Oh, and one other thing, I'm really glad we were able to get out to Brenham this past Saturday to shoot Ashley & Dusty's wedding at a beautiful rose garden. Good times and BBQ!

Wednesday, October 20, 2010

Questions...I want to cover them all

Hello! Brea here this time. I'm typing up a list of questions to ask the doctor. We just want to be sure that we fully understand the situation as best as we can before actually beginning any treatment plan. We are pretty sure that we will be proceeding with the radial amputation but again we just want to be thorough that we have asked all the questions we can so that our decision is as informed as possible. I mean who really wants to set an appt to "give cancer the finger". So this is what I have right now, I'm sure there are other and better ones to ask but I can't think right now so I thought I would seek help from whoever is willing to offer it. Based on what you know from following our blog, which is pretty much everything we know, what questions would you ask, or in the case of some of mine, ask again? I know that some of mine are kinda stupid or redundant but I would rather look stupid to one of the best doctors in the world than not have the peace of mind knowing that I asked. So please share, if you can't comment on the blog for some reason send us an email or facebook comment or message.

Why is watching it even an option? Isn't that basically waiting for it to get worse since the margins were not clear or is it possible the remaining cells won't actually do anything?

Since we know the margins were not clear but the cancer has been down-graded is radiation on his finger a possible treatment to kill the remaining cells if we decide not to do the radial at this time?

Is removing additional tissue but not the whole finger an option at all?

Is there a likelihood of phantom pain? Or chronic pain in his hand?

In low grade sarcoma what is the recurrence percentage in other patients when initial site is not completely removed?

Since it is considered a less aggressive cancer does that mean it is not as likely to metastasize?

If the radial is done will other treatments also be necessary? Radiation, chemo?

Can we have the lower half of his body checked to be sure he does not have the misfortune of having another growth in a place that we have not looked at yet?

How long would the surgery be for the radial?

How long is the healing process?

The cancer was in his finger for over a year without spreading, what is the likelihood that it will spread now that the tumor was removed but the margins were not clear?


Thanks so much!

Friday, October 15, 2010

I've been called indecisive before...

...as it turns out, my tumor is too. :D

I got a call from Dr Lewis again on Thursday afternoon and she let me know that after that
review back on Tuesday they're still not 100% what to call my sarcoma, other than sarcoma.
She said it showed more of the characteristics of low-grade sarcoma but apparently was throwing them for a loop on the precise diagnosis. In retrospect, I should have asked what characteristics made it so ambiguous but I should be able to call back and ask.

But here's the kicker: I apparently have two options for treatment at this point with a third that is often suggested by us non MDs but probably better in theory than actuality. It sounds like the Dr Lewis was still leaning towards just doing the ray amputation because it's the safest option overall in regards to cutting off (no pun intended) the source of this low-grade(?) but still nasty cancer.
However, she did say another option at this point would simply be "close observation" which I suppose is a fancy way for saying "wait until something bad happens somewhere else or it looks like it's re-growing." The downside to this option would be a heightened chance that it could metastasize elsewhere to a place much more vital than my middle finger. Now I don't know how close this observation would be and whether it's worth it to risk it but the interesting thing is that she listed it as an option.

The third option that Brea asked me about was this: Couldn't they just try and clean up the area and get clean margins? ...And the answer to that is most probably no because frankly my finger doesn't have all that much too it. Add to that issue the concern that digging around there could stir up the bad cells and actually cause it to spread, which kinda defeats the purpose.

I'm not much of a gambling man but I like taking calculated risks every now and then. With that being said, I don't like being overtly stupid regarding serious matters. But here we are with a choice. Dr Lewis said we could give her a call back in a week or so and let her know what we'd like to do.

It is clear that a ray amputation of that finger is the preferred treatment largely because it is the safest known option with the largest probability of stopping this cancer where it began.

The thing is that good news has been coming in and frankly, I know that this could be an opportunity for the cancer to just miraculously go away, but I also know you don't test God. I trust He could do anything really, but the question to me is whether or not the best path is making use of the amazing structure of capabilities provided through the medical complex or if it would be something else entirely. Right now I'm leaning towards doing the surgery because we're in a place where it is an option and dealing with the adversity it brings up is an opportunity to genuinely show that I've got hope beyond the physical. Whatever happens, it's all good and I know things could go a hundred different ways and I'm cool with that. Shoot, maybe they'll take it off and it'll show back up in place when the bandages get taken off, that'd be an undeniable shocker. :D

So there you have it. Call it "Decision 2010" and let the games begin. Should I give cancer the finger and walk off for the better or hold out for something else? Either way it could be a moot point and I could get caught up in a freak gasoline fight accident and the eugoogely might not even mention cancer as the cause. Yes, that was Zoolander, I'm sorry. I don't know what's going to happen but we'll have some fun any which way this story takes us. :)

Monday, October 11, 2010

Smiles :)

Hey there friends and family!
So you know that good news you've all been waiting for? I think some of it came in more officially just a few minutes ago...

Dr Lewis called and said that the pathology of the tumor that they (MDA) performed seems to suggest that the diagnosis be downgraded from synovial sarcoma to a low-grade sarcoma (less aggressive). The implications of this for that finger are still not clear because it was found at the margins of the biopsy (the tumor that was cut out) but with all things considered, it's still great news. So what's going to happen next is that Dr Lewis is going to go to a sarcoma conference tomorrow and maybe call Dr House (I kid) to confer with her fellow associates and (I'm pretty confidently assuming) experts in their fields. She may call me back late tomorrow, I may call Wednesday, it all depends on what all may happen with the conference and some other lab that is coming in that I forgot to ask about.

So needless to say Brea and I are pretty happy about the downgrade and even though the finger may still be a goner, I was able to ask and confirm that treatment wouldn't start until probably the beginning of November. That means that I'm especially happy because I'll be able to fulfill my commitment to photograph a wedding (Lord-willing, barring any unforeseen bumps in the road) that is coming up soon. By the way, many thanks to Ashley who knew about all this (thanks to fellow Eric H) and did not flip out (to my knowledge :D) as really she'd have every right to when your wedding photographer suddenly gets cancer and you find out the month of said wedding.

On top of all this, what has been a side note due to the prospect of the whole thing getting lopped off, my finger has been healing nicely from the surgery that exposed all this sarcoma nastiness. As you can tell from figure B to the right, it is pretty discreet already just 31 days afterward. So yeah, smile people!

Saturday, October 9, 2010

Good news?


This is just a quick update because we actually haven't heard back from the doctor yet. I did, however, get the MRI report and disc of images.

Without a medical eye for this, I have no idea what this actually means but it sure sounds good! Here are the "impression(s)" from each of the reports I have so far:

Ultrasound - Unremarkable left upper extremity ultrasound without evidence of pathologic adenopathy or mass.
X-ray - Negative chest
CT - No evidence of metastatic disease
MRI - Presumed post-surgical changes with no definite residual disease.

It would seem that this means that my condition is not very advanced which would be fantastic... but this isn't official word from the docs so I'm not holding my breath. :) Still, with nothing jumping out with alarm bells, I can't help but think that prayers are being answered.

So maybe we'll hear from MDA Monday, maybe... either way I'm not worried. It's the weekend baby yeah!

Wednesday, October 6, 2010

The radiologist held me up! I kid... I kid...


Yessiree, it's me again.

Yesterday involved a rocket-run back to MD Anderson for the last piece of the diagnostic puzzle for now (Lord-willing). That MRI that's been talked about everywhere (aka, this blog) finally happened.

At my very first MRI I have to say it was pretty much what I was told it would be and aside from my arm falling asleep on a first pass and my neck cramping on another, it was pretty cool. There was the jackhammer, the nuclear meltdown warning honk, the whale song clicks, and what I think was the machine playing duck-duck-goose without ever getting to said goose. I got in at 4:15p to check in and by 4:30p they had me in scrubs and waiting to get the IV line in. I lost track of time after that because of all the magnetic stuff going on, I couldn't bring my phone or watch with. National Geographic is an awesome magazine by the way. It'd be fun to get some photos in there actually. Perhaps I'll get to working on that...
Anyhow, I finally got called in and got to see the machine. This one was actually open-ended to load either way which is a little different that I'd expected but nice. The doc/tech wound up trying a couple different positions before I wound up lying on my left side with my arm out in front, sort-of superman style. They had my hand on/in some sort of cupped contraption at first and it wound up not working (was told it was fuzzy) after who knows how long. They stuck it in-between two plates for what I'm guessing actually worked. :) Afterward while waiting for the IV to be removed I had some quick but good conversations with some patients who were about to go in for their MRI. Good times. I was back in my own clothes by about 7:30p or so and then it was time to head back to ye olde Austin.

Oh, and before I forget, I got copies of the CT, x-ray, and ultrasound tests which are pretty cool to look at, not that I know what to look for... This chest x-ray is the inspiration for this post's title. It is not of me surrendering, the radiologist just told me to lift my arms is all. :)

So now we wait. As mentioned in the last post, they probably won't have anything for me until late this week so life goes on. I know I've said it a lot but the toughest part of all this really is just not being able to plan with any amount of certainty. I suppose it's for best and really, I've never been big on planning anyway. I've always known life to be unpredictable and while there might be a direction you're going, you might have to switch a couple lanes along the way. Hopefully everyone else's week is going well? :)

Monday, October 4, 2010

Just chillin'


Since I last posted the main thing that's happened medically is the ultrasound of my left shoulder and upper arm areas. It was pretty cool actually. The monitor showed what looked like a moonscape at times and I could see strands of glands and sheets of tissue and muscle and whatnot. Maybe I'll be able to get copies of those images and show you what I mean.

But yes, that has been the extent of progress to this point. Coming up tomorrow is the next bit of fun, the MRI. This'll be a first for me and as the comedian Stephen Wright has said, "I'm gonna have an MRI to find out whether or not I have claustrophobia." Well that and whether or not there's any sign of cancer in the more important parts of me. :)

While trying to find out anything more about the timeline of things post-MRI, I sent in an email to the docs and got the folllowing reply:

"
I spoke with Kristi, Dr. Lewis' PA and we are not going to schedule you for a follow up appointment at this time. They want to get all the testing done, get the reports in, review your case and set up a treatment plan. I believe that Dr. Lewis instructed you to call several days after the MRI is complete. Since your MRI is scheduled for next Tuesday, you could call for results on Thursday. Not sure they will have answers on that day, but you could get your call in and they will call you back when a plan has been formulated.

Let me know if you need anything else.

Thanks for your patience,
"

We're thinking that means next Wednesday is the soonest we'd probably be able to go back in for a face-to-face meeting with the doctor and probably the first we'll get a fully definitive diagnosis, letting us get the ball rolling on treatment.

In all honesty my main concerns have been how all this is going to fit in with things that were planned months ago that are now fast approaching. I'm supposed to be shooting a wedding on the 23rd and we were going to make a trip to California to pay respects to my Mom's mom as well, tickets were purchased already and everything. I certainly don't want to stress out a bride or be a distraction on her big day and I've already missed the actual funeral for my grandmother(s) so it would be ideal to push any treatment out until the last week of the month if possible.

Anyhow, what will be will be. This whole situation reminds me of a passage in James that feels especially applicable:
Jam 4:13Now listen, you who say, "Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money." 14Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15Instead, you ought to say, "If it is the Lord's will, we will live and do this or that."

So I'm keeping on my toes. :)

Brea pretty much mentioned all the other stuff that's been happening around the medical hoopla so I'll just mention my own gratitude for all the family that has been showing such great hospitality in letting us stay at their homes and beating me to the punch at paying for meals and all that good stuff. Thank you!

There is one other thing actually. We wound up watching "The Social Network" and I can't stop kicking myself for not snapping a screenshot and posting it on Facebook during the movie... It's for the best I'm sure... :D

Saturday, October 2, 2010

Well we can't get it tomorrow

Chik Fil A that is. Which is what we just picked up for dinner as we head back to Austin for a few days.

We don't have too much to update on the medical part of this situation but I'm feeling a little chatty (or shall I say typy) so I'm gonna expand on how God is taking care of us through this time after a brief update on the current diagnostic status.

Eric had his upper arm ultrasound yesterday and the tech told him that she didn't see anything. While that is pretty much an unofficial statement we were happy to hear it. We were not able to get his next test, an upper extremity MRI, scheduled until next Tuesday so we decided to head back home for a few days. Since we won't get to hear any official results or discuss treatment plans until all tests have been done and reviewed we are still pretty much just in a discovery and waiting stage. We are hoping that we will get a call about results on next Wed so we can finally know the fullness of this situation but we were told it may be a few days after the MRI so we really don't know.

Everyone has been asking, "So how are ya'll doing?" Ironically we are doing very well and have actually been able to enjoy a good portion of the last few days. The last few days have been full of time with different people in my family in situations we don't have the chance to enjoy barely ever. Wednesday we spent the entire day with our Aunt Loretta, and while we waited hours and hours to see the doctor we actually filled most of the day with laughter. Then we had dinner with her, Uncle Rob, and cousins Chris and Courtney. We barely see my cousins except for holidays and we got to spend the night with them which gave us the opportunity to see their home and time to just chat and although I was having a hard time processing the doctor appt it was truly wonderful to be surrounded by loving family. Thursday, after we finished up at MDA we went to Cosentino (my company's corporate office) and I got some work done. They gave me some space to work and again reminded me that I really didn't need to worry about it. But I wanted to and was glad that I could spend a bit of time at the office. I've been with the company for 8 years and Wed morning was my first time to make it to the corporate office and to meet many of my co-workers face to face. Working was actually great both because it was a distraction from the heavy subject of cancer for many hours plus I'm kinda workaholic so I was glad that I was able to get some work done. We then headed to again meet up with cousins Chris and Courtney for dinner. We had some awesome chinese food, I think the place was Hollywood Chinese and Viatnamese, it was off Montrose, soooooooo good! And as some of you know chinese food is always a good way to make me happy. And then we headed on to finally catch up with my sister Stephanie and family. We chatted some, relaxed and watched some tv. Again, spending time with family that we rarely get to see outside of holidays and we just got to join into their evening and be there together. Friday started early, I got a text from my sister Amber at about 5:30 a.m. asking if she could come spend the day with us. I responded with "Absolutely!!" A few minutes later we got a call from Australia from our crazy bloke Ben and Eric's sister Karen. I stirred Eric so he could chat with them a bit. We slept a little more and then my sister arrived and we headed out to grab some breakfast. We ended up getting to spend the whole day together. I did a little bit more work and then we headed out for Eric's appt. That went pretty quickly and we got to finally meet up with Jacque. My boss' (Chester) brother in law who works at MDA and has offered to help in anyway he can. Just knowing that people we have never meet want to help us is so amazing. On that note I should also mention the incredible love that we have felt from our dear friends the Padula's as they have reminded us daily that they are there for us and praying for us and that Ben even mentioned us to the CEO of his company who is a former oncologist and also offered himself as a resource. God is so good to surround us so completely in love in so many ways. After leaving MDA the three of us decided to catch a movie before we met up with Stephanie and family for dinner. Again, I mention this because we don't get to spend this kind of time with my sister that has four kids. It was a precious time for us to just enjoy each other and while the reality of why we had the opportunity to do so did not escape us we still got to laugh and talk. And I should let you know, we have laughed at cancer a lot. Weird right?! Well, we have decided to not let cancer steal our joy but rather to increase it. After watching The Social Network (which we all liked) we meet Stephanie, Felipe, Lauren, and Seth for dinner at Carinos. Over dinner we decided that we would all stay to catch the kids homecoming game the following morning (this morning). We went back to the house and made brownies together, got a preview of the mother daughter dance, and watched some TV. This morning we rose early, headed to the football field and got to see Lauren cheer, Stephanie dance, Seth play football, and Felipe coach. Eric was taking pictures the whole time, shocking right! And us three sisters got to chat and hear about being a cheerleader and football mom and the drama that can come with that. After 4 hours of taking all of that in Eric, Amber, and I headed to Tomball to see her family. While seeing Amber and family isn't usually rare, we haven't seen them since before our trip to Australia in May, so we were long overdue! I rode with Amber and we had wonderful conversation. We talked about prayer and aligning our hearts with Gods plan in both the good and bad things. And about how much of a blessing Eric is to our family and how him joining our family has been such a delight for all of us. She said she has always felt like he is the diamond in the rough in our family. I think that is such a perfect and beautiful image. In the years since God brought us together He has used Eric to teach all of us so much. Eric is always showing us what it looks like to be a person that rests in the peace that God and it's so amazing to see him to stay faithful to that in the face of this trial. We had the time to just be sisters and share our hearts with one another. Eric was probably a bit thankful to have some alone time for the first time in many days. He didn't ask for it but if I could have an hour or so away from me every couple of days I would take it :-) We finally got to see Jason and the kiddos plus Erica, John, and family. I played dolls with the girls a bit, Eric played some Legos and then most of us watched a movie together. And then we pulled ourselves away and are now headed home.

I am so thankful for all of our family and friends. We didn't have time too dwell on what could be over the last few days, we were just too busy as you can tell from the above.

As we head home I can assure you that we feel the power of your prayers. Days that could have been filled with tears have been filled with laughter. God is good and we trust in Him. He has been faithful in giving us peace, courage and so much more. Our prayer for all of you is that if this situation has made you sad, scared, or angry that you would find peace in Him and that you would recognize all the ways in which He gives us reasons to delight in Him each day.

Thanks and Love,
Brea