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OBAMA WINS!

I joined a bike club (Big Shark) out of St Louis...and am super excited to have some people to ride with.

School is hard right now, but the balance of having Maggie, Cassidy, and biking is making it actually more bearable as opposed to more stressful.

CX!

After 2 or so years of contemplating it, I finally started doing some cyclocross races this fall. So far it has been a way for maggie and I to chill out in the car together, get Cassidy outside, and to stop thinking about med school!

50:50

I had a whole body scan today, which is definitely probably the most fun anyone can have. The idea is that the small dose of radioactive iodine will uptake into the cancerous cells in my lungs and any remaining cells in my neck.

After I got off the table I asked the technician to see the scan to which she replied 'yeah but you probably don't know what you're looking for'. Yeah, those damn patients who think they have a memory about their body and all that has happened to them in the last few years...man are they all dumb. oh well, couldn't hurt anything...so she agreed.

To my surprise there was absolutely nothing in my lungs or neck. "Hmmmmm" thought I. Weird. When you've been sick for 3 years you learn to calm your emotions down pretty quickly and not get too worked up for things. My thought at the time was that we'll wait and see.

After the scan we walked over to see the endocrinologist. It was then that we learned that was indeed good news. The short story is that I do not need a radiation treatment at this time!

The remaining question is whether or not the blood marker that we follow (thyroglobulin) will now drop to undetectable levels now that some lymph nodes have been removed from my neck. If my thyroglobulin drops way down, we'll know that all of those old iodine treatments actually worked. If it doesn't drop, then we'll know that this scan was a bit of a false negative and that there is in fact very small disease in my lungs, that will maybe need to be treated at a later time. The odds at this point of 'cancer gone':'cancer still here' are 50:50.

Right now I still have to finish this dosimetry study. I should be free on Saturday with 2 weeks left to spend this summer before school starts again on August 4th.

Dosimetry

Today I am beginning a procedure that will determine the amount of radioactive iodine I can receive. I'll begin today with a blood draw, followed by a shot of recombinant thyroid-stimulating-hormone (rTSH). I'll continue to take my thyroxin each day of this entire procedure, which is a very good thing from my perspective because the majority of symptoms I've experienced in that past have been due mostly to being severely hypothyroid and off of my thyroxin.

Tomorrow, I'll receive an additional rTSH shot, then a very small dose of radioactive iodine (I-131). At 2 hours and 4 hours after that small dose, I'll have a scan and a blood draw. The blood draws and scans will be repeated each day until Saturday, at which point, all data will be entered into some kind of algorithm and a max dose of radioactive iodine that my body can handle will be known.

I'll then get 2 more shots of rTSH and then I will have that big dose of radioactive iodine next Thursday 7/24.

The reason for this plan is that I have small (1-3mm) diffuse metastatic thyroid cancer in the lower lobes of both lungs. We have known they are there and we have been treating them since 2005 but they have no yet gone away. The reason that we have waited until now is that the daily thyroxin that I take is able to suppress their growth, so that they pose very little threat to me. Now that most, if not all of the tumor has been removed from my neck, this large dose of radioactive iodine is meant to eradicate as much as possible of the disease in my lungs.

In terms of side effects, the dosimetry will not produce any at all because the dose is so incredibly small. The large dose however will require me to stay in the hospital for a day. I'll probably also have a bit of a belly ache and maybe my salivary glands will hurt a little b/c the iodine has the ability to concentrate a bit in the salivary glands. Luckily, my mother in law rush delivered a 94.5-pound bag of lemon drops for me during that 3-5 day period when I may (or may not) have some mild salivary discomfort.

No more drains!

On Tuesday I went back to the hospital to see the surgeon and was really excited to hear that I'm healing well and could get my drains and stitches out! It tickled a bit, as they pulled the 1 cm diameter tube that was crammed into my neck...and the stitches seemed to take forever, but I'm so happy to have that stuff out of my body.

We went out to a great Lebanese restaurant to celebrate afterwards for one of the few meals that I can eat out right now. The story with my diet right now is that I must eat a low-iodine diet for 2 weeks in preparation for my radioactive iodine treatment beginning on July 14th. Low-iodine basically means no seafood, iodized salt, sea salt, dairy products (except egg whites?!), soy foods, processed foods, or red dye (I think it is #3, but I just decided to limit all of the red dyes I'd normally be eating). The seafood limitations sucks in particular while in Baltimore, but oh well. The lebanese restaurant knows me and can prepare salt-free chicken kababs, grilled veggies, rice, and whole-wheat pita. All in all, it is a really great meal and not that different from what I normally eat, especially since red wine, beer, and coffee are still on my menu!

Ok, the above pictures are me waiting to get the drains pulled (and no, it didn't actually tickle, but it wasn't too bad at all). The below pictures are after getting them pulled. If you're having trouble seeing the pictures, just click on one and it should open another window in your browser.

On the Mend

Here I am the day after the surgery snoozing and feeling totally exhausted. It is interesting how much my blood pressure and pulse have been up since after the surgery. Normally my BP is 95/60 mmHg and HR is 40-55 resting.

Since getting out of surgery I've ranged from 144/95 mmHg to 125/85 mmHg in BP and have not been lower than 70 bpm. There is so much going on with the drugs, pain, trauma, lack of movement, and change in diet to cause the change. I think last surgery it took ~1-2 weeks for my BP and HR to go back to normal. It is also interesting that I'd be considered normal with a BP of 125/85 and a HR of 70bpm by most people...but in fact would not be normal based on my own physiology.

Sunday (4 days after surgery) my mom left and I decided to practice a little track standing in the hotel room...so over all, I'm doing pretty good. Oh yeah, we had an amazing opportunity to stay in this suite at a downtown Baltimore hotel for the entire month that we're in Baltimore for free. The room was set up as a trust in memory of a family's son who died of leukemia at age 6. A website for information about the father is: http://www.gordonlivingston.com/.

Aren't I pretty?

Well it is the day after the surgery and I'll spend an additional night in the hospital. I feel pretty good except a big pain in the neck and in the butt. Seriously, guys that are skinny who spend 7 hours on the operating table sometimes have circulation cut off to the muscles in the back or butt. It never happens with bigger folks, the surgeon said the last guy was a wrestler from KU now a climber/biker/runner from MU.

My right piriformis and posterior superior iliac spine hurt more than my neck. 

Tomorrow I'll go back to the place we're staying at...which has turned out to be a great story that i'll write about later.

Dan's out of surgery! It is 6:26 PM, and Dan's surgeon, Dr. Tufano, just came out to meet with us and give us a rundown of the day. He said that many of the risks and complications that could have arisen were averted. This is great news. All nerves and muscles are intact, no thoracic duct laceration, no significant blood loss or vessel involvement. Dr. Tufano said his smile is symmetrical, tongue function is normal and Horner's syndrome was avoided. I'll go in and see him in a few, but he is awake and recovering! Hopefully he'll soon be updating you all himself!

This is Maggie. It's 12:05 PM here in Baltimore, and they just started surgery on Dan. Looks like it might be a 7 hour operation, and I'll update while he's in the OR with any news.

Now it is 5:46 PM. Dan is stable, but still in surgery. No idea how much longer they will be at work on him.

Dr. Ladenson (Dan's endocrinologist) just stopped by to give us a bit more info. He spoke to Dan's surgeon who was optimistic about being close to completing the surgery. The surgeon found several nodes, but many of them were very difficult to access. He had nodes posterior to both clavicles and one on the left that was adjacent to the subclavian artery. It also turns out that the nodes identified by ultrasound in the central compartment was actually residual thyroid tissue. This part of the surgery was especially difficult because of close proximity to the recurrent laryngeal nerve and phrenic nerve. Dr. Ladenson and Dr. Tufano (the ENT surgeon) both sound optimistic about his recovery time. We are relieved.

July

Here is my neck before ultrasound and after ultrasound. The marker is my tag for the next 24 hours. The surgeon will use them tomorrow to know where he is going to make his incision.

The next photos we'll upload will be after the operation (which is Wednesday July 2nd)! I'm quite nervous and definitely feeling like I'll be lucky to get out of the surgery without any complications. Each of the two prior surgeries makes this third one even more difficult. The first was in March of 2005 and involved removing my thyroid and 52 lymph nodes from my neck and mediastinum, 48 of those had papillary thyroid cancer in them. The second was in August 2006 (a week after I took my MCAT) and involved removing 13 lymph nodes. I think all of those had cancer in them.

Now there are 11 lymph nodes...which leaves a few questions that have been on my mind.
1. How many freakin lymph nodes are there in my neck?
2. Has the cancer been controlled the last 3 years or did it grow?

The surgeon that is doing my surgery said that almost no matter what, I would have needed multiple surgeries because there were so many metastases. However, if he would have done my first surgery he would have taken out every single lymph node he could find. That would often be ~80. This is all a lesson in the fact that world class medical centers across the country often have different schools of thought or philosophies of doing things. I was treated a little bit parsimoniously with regard to surgery and very aggressively with radioactive iodine. There was nothing wrong with this treatment, it just didn't work well for me.

So the answers to the questions above are: lots (>80) and it has probably been the way it is now since right after my second surgery. So it probably has not gotten worse.

ok, bye bye.

I feel like I've been stuck in really bad traffic over the past month. There hasn't been a thing I could do about it except for be patient.

Today I just found out that my surgery in Baltimore will be on July 2. Most likely, I'll stay and receive the radioactive iodine treatment from July 14-Aug 1.

The surgery is now tentatively scheduled for the 3rd week in July. I'm pretty bummed right now, because I will still have a radioactive iodine treatment 7-10 days afterwards. The radiation treatment unfortunately lasts ~3 weeks. This all makes school on August 4th a big question.

Dear World,
Life is easy when you don't have a job. You can make plans at the drop of a hat. Unfortunately, you have no money. However, when you're getting treatment at a medical institution one must have a lot of time. So I suggest if you ever get a disease, you should probably be unemployed, have good insurance, and have parents with frequent flyer miles and the ability to help out with some bills.

The story as of now, is that I still don't have a surgery date. I met with the surgeon today, who wants me to come back tomorrow and get a CT scan with iodine. Tomorrow (or maybe friday morning) I should have a date.

Change of plan:
The surgery that was going to be at Wash U on friday is now going to be sometime later out in Baltimore. I was going to get a very careful and select removal of bad lymph nodes, now I'll have a more aggressive surgery where they'll remove all the lymph nodes they can find.

It used to be the case that the surgery I'll be having involved cutting a muscle or two in the neck (SCM) but the guy who will be doing it is supposed to be very good and hopefully won't have to do so.

The last 24 hours have been crazy and stressful. This whole change of plan came up very quickly. Generally it throws us off schedule for the summer and may result in the need to miss some school. Hopefully I won't miss too much and I'll still be able to start on time.
Oh well, es la vida.

Pre-op

This blog exists so that your email boxes won't be so cluttered. I'll just record the events of the summer here and hopefully keep friends, family, and colleagues posted as to my treatments this summer.

Currently the schedule is:

June 6th: Remove 11 lymph nodes from both sides of my neck and above my collar bones. This will happen at Wash U in St Louis. I should be in the hospital for 1-2 days afterwards. Hopefully I'll be climbing and riding my bike the monday afterwards ; )

Sometime in June: get some shots (G-CSF for you medical folks). Then get my stem cells harvested. These will be for a rainy day if I ever need 'em after my radiation treatment this summer

July 7: Show up at Johns Hopkins in Baltimore. For the next week and a half, I'll be going to the hospital on a daily basis. On the 7th I'll receive a very small amount of radiation (I'll drink it out of a little vial with a straw) and a shot with a fake (recombinant) hormone that makes my body think I don't have any thyroid hormone (rTSH). Each day afterwards, I'll get my blood drawn and a scan. The idea is to 'study' how my body deals with the radioactive iodine that I drank so that they can calculate the largest amount my body can handle.

July 17: Drink a big 'ol dose of radioactive iodine. yum. Then I'll be bubble boy for a day or two and have to stay in the hospital.

One week later on July 24: I get a scan and a meeting with the doctor to see where the iodine was taken up...which we already know will be my lungs and we hope will not be my neck since we're hoping the surgery takes care of my neck.

Some number of months later: hopefully I'll have a blood test and it'll show I'm finally (after 3 years...diagnosed in 2005) in remission! Sweet.