Ongoing recovery and looking for a job

Recovery continues.   Last week I started getting some exercise, swimming at the local city pool and riding my bike -- rode out to Ocean Beach on Friday (12.1 m, 448 ft elevation gain) -- and just about didn't make it back (but I did).  Feels good to be getting out and getting stronger.

Still having trouble with eating -- it's a real chore.  My swallowing muscles were weakened by the radiation, and that makes everything difficult to swallow.  It seems to be improving, but it's slow.  The other problem is that my saliva glands are severely compromised, so my mouth is extremely dry.  They say that my saliva glands will recover over the next 2 years or so, so that should get better.

I've started looking for a new job -- my old company folded May 1st, so we've been running on savings, COBRA and state disability.  It's daunting to be on the market again.  My first interview is today, at Facebook.  I woudn't have considered them, but my old manager (from vmware and hillview) is there, and I'd love to work for him again.  We'll see what happens.  From what I've seen so far, it looks like a really great place to work -- they seem to do everything they can to keep developers happy, and that sounds nice for a change :)

Cancer free

I am apparently cancer free.

My MRI results were so good that my radiation oncologist was giggling.  She said the scans are so clear that I can skip the customary 12-week PET scan (which is extremely unusual).

Now all I have to do is get my strength back.

Thank you all again for your support!

-Hans

MRI preliminary results good!

Today I had my first post-treatment scan (MRI -- A miserable 40 solid minutes in that damned tube) -- and the preliminary results are good!  The primary (huge) tumor in my tongue appears to be completely gone, and the lymph node metastases look normal as well :)

I get the official results on Thursday.

Hallelujah.

That you all for the love and the continued positive energy :)

Post-wedding crash

After David and Bonnie's wonderful wedding in the Blue Ridge Mountains of Northeast Georgia, I crashed hard.  My energy went down to the lowest it had been since I finished radiation, if not worse.  I think I just wasn't eating enough, and the extra energy expended traveling overwhelmed my fragile state.  I've been clawing back, trying to eat more, and I quit taking oxycontin, which I think had some negative (withdrawal) effects, but overall after 2 weeks I'm starting to feel better again.  My biggest problem right now is that I'm not sleeping -- I'm taking 30mg of Temazepam in the evening, and waking up about 4:00 totally wired.  Maybe the oxycontin withdrawal.  The Doctor's not sure, but he's giving me something else to help me sleep.  Once I get that sorted I think I can get back on the horse, and start looking for a job!

Still here

Has it really been 2 months since I posted? (Why yes, yes it has).

Well, I'm still here!  Finished radiation and chemo almost 5 weeks ago, and I think I'm starting to feel a little better.  It's been a rough road; my expectations for recovery were out of step with reality.  The first couple weeks after radiation is over actually get worse, then it levels out a bit, and finally, *finally* I can see some light at the end of the tunnel.

My biggest struggle has been getting enough to eat.  I still can't really eat anything solid, so I'm surviving on protein shakes and the like.  Mostly, I haven't been eating enough. I've lost almost 50 pounds all told, which is way more than I was supposed to, but the doctors don't seem too concerned.  The last couple of weeks of treatment I was borderline dehydrated, but I managed to get through without IV fluids.  At least I'm getting enough fluids now.

I'm pushing myself to get better so I can make it to David and Bonnie's wedding on June 1st in Georgia.  I'm starting to get out and get some exercise, and pushing myself to eat more so I can get stronger.

I've been doing a really poor job of communicating with everyone -- thanks to everyone for your kind cards, letters, emails, care packages, plants, flowers and pets :)

Progress and pain

Finally an update!

I started feeling really bad on Thursday of my first week of radiation (the day after my last post) -- I had rescheduled my daily radiation appointment from 12:20 to 8:30, and was planning to go back to work on Friday,  but Thursday after radiation I was just wiped out -- with one of my classic headaches associated with throat and ear pain (from the cancer).  It seemed to get worse that first week, and was pretty constant for at least a week after that.  Then, suddenly last weekend, the headache cleared (mostly), and I started feeling semi-human again some of the time.  That must mean the tumor's shrinking!  Cool.

About the time that I started feeling better from the throat/ear/headache,  the radiation caught up with me, and my throat started feeling really raw.  I'm having trouble eating just about everything -- swallowing is very painful, and most foods sting my throat something awful.  I'm down to mostly smoothies, shakes, yogurt, and cottage cheese.  Jane made me some scrambled eggs today, but they were pretty hard to swallow.

The radiation and chemo also seem to be sapping my energy.  I was able to work for an hour or so yesterday, but then I was wiped out and slept for several hours.  But with the awesome support of my wonderful wife, I've been able to rest and not have to do too much.  Thanks Jane :)

Also, big shout outs to our friends Zoomer and Pinky, who came through with awesome delivered meals last weekend!  Thanks guys!

So far so good

I had my second infusion and first radiation treatment yesterday, and my second radiation treatment today. Everything went fine, and didn't seem to affect me at all (apart from the pre-infusion benadryl putting me to sleep).  No headache this time (well, no worse than my usual).

I know the radiation is cumulative and will start to really get unpleasant in a few weeks, but for now it's not bad (apart from being bound in the plastic mesh while the business end of the radiation device moves around me making ominous sounds).

I also got my radiation treatments moved from 12:20pm to 8:30am, so I'll at least be able to get to works a few days a week.  Speaking of work, it remains unstable, but there are some potentially interesting developments on the horizon...

more later.

First infusion

I had my first infusion yesterday - I'm on cetuximab, which is much less toxic than the standard chemo (cisplatin) - no hearing loss, no nausea, and probably no hair loss.  I'll be getting infusions every Monday for the next six weeks.

I had a nasty headache today, which might be the chemo triggering a migraine, so didn't do much.  I'm hoping I'll feel better and be able to go to work tomorrow.

The man in the expanded-mesh mask

Radiation planning session today -- they built me a custom cage for my head to hold me in place during radiation and ran a CT scan with the cage in place to map out the tumors for radiotherapy.  I felt like I was in a sci-fi horror movie.

I have also agreed to take part in a study comparing the current standard-of-care chemotherapy drug (Cisplatin) with a newer (and less toxic) drug, Cetuximab.  It's a randomized study, so I don't know which drug I'll get. Cetuximab doesn't have the ototoxicity problem (Cisplatin damages your hearing), but it's not as well proven.

More information about the study here:  RTOG 1016

Next up: Radiation dry run (testing the programming done based on today's scans) on 2/25.

A tale of two oncologists

Things are moving along.  Last Monday, I met my medical oncologist, who will be overseeing my chemotherapy.  Awesome doctor #2.  Chemo will be 3 doses 3 weeks apart, starting at the same time as radiation (doing the treatments concurrently works best for this particular cancer).  I have to do detailed hearing tests and kidney function tests,  as the chemo drug (Cisplatin) can cause hearing loss and kindey damage.  Fun.

Today I met my radiation oncologist, another awesome doctor.  She gave me the rundown on how radiation is going to work - relatively high, targeted doses 5 days a week for 6-1/2 weeks (for 33 total).   This will knock out my salivary glands, and I'll have to keep my mouth wet with a baking soda/salt solution every hour (or better) throughout the treatment (baking soda to neutralize acidity from the lack of saliva, and salt to kill bacteria).  And I had to get clearance from a dentist before treatment because radiation can wreck havoc on your teeth and jaw.  Any infection in the jaw could lead to serious consequences.

Radiation will make it hard to swallow, and probably knock out most of my ability to taste.
And I'm not allowed to lose weight, or it'll throw the treatment off.   This is going to suck.

Also, my little company is on the brink of going out of business.  A couple of weeks ago, our majority shareholder (an Indian services company) fired the CEO and installed one of their guys.  Then last Friday our principal engineer quit.  I spent the weekend thinking that they might just shut us down.  But the new CEO wants to keep it going and see if we can turn it around.  So I have a job for at least a while longer.  I hope that it'll last at least until I'm done with my cancer treatment...

Chemotherapy (is what they wanna give me)

I just got a call from Dr. A.  He said (as I suspected) that the mass in my tongue is larger than he hoped, which means that we'll have to go the chemotherapy/radiation route rather than surgery/radiation.

The good news is that the biopsy was positive for the P-16 marker, which indicates that the cancer is HPV-related, and that the prognosis is still good.

So, the treatment will be longer and harder than I was hoping, but I still have a good chance to come out cancer free.

Next steps are consultations with the radiation oncologist and the medical oncologist (chemo).

T4aN2b

Dr. Awesome managed to get my MRI and PET/CT scans moved up from February 6th to yesterday.

I got the results of the MRI today (with an online viewer for the scans -- very cool).  From my layman's reading of the report, it sounds like the tumor in my tongue is very large (4cm in the largest dimension). The report closes with:

These findings are consistent with stage T4aN2b squamous cell carcinoma of the oral tongue

T4aN2b means (from www.cancer.org):

T4a: Tumor is growing into nearby structures. This is known as moderately advanced local disease. 

N2b: The cancer has spread to 2 or more lymph nodes on the same side as the primary tumor, but none are larger than 6 cm across

I felt a slight chill and a wave of nausea as I read this. I'm hoping to talk to Dr. A soon and find out exactly what this means, but I'm pretty sure it's not good news.

Biopsy #2

The biopsy went well - they verified the primary site, did not find any other suspicious sites in the esophagus, stomach, lungs, etc.  I don't know if they verified the P-16 markers or not, I'll try to talk to my doctor today and get the details.

Thanks to Jane for taking such good care of me before and after the procedure :)

more later...

Dr. Awesome

I got to meet my surgeon at UCSF yesterday, who will be overseeing my treatment there.  He seems scary smart, super dedicated, and determined.  God complex?  Maybe, but at this point I don't mind.  Good hair, too.  I've taken to calling him Dr. Awesome.

He identified the primary cancer site -- extreme back of the tongue, on the left.  It's the same spot that my ENT had said was the likely candidate.  Also, it turns out that the original biopsy was inconclusive for the P-16 protein, which means that the cancer might not actually be HPV-related after all.  P-16 is a good thing, as it indicates a better prognosis.

I'm having a surgical biopsy of the primary site tomorrow so they can take a piece of the tumor and explore the adjacent areas for any signs of other abnormalities.  It'll be the first time I've ever been under a general anesthetic, or had any kind of surgical procedure (unless you count tubes in my ears when I was 3).

Dr. Awesome laid out two possible courses of treatment, depending on what we find with the biopsy and the MRI and PET scans.  (and regarding the insurance, he said "oh, they'll pay for it")

The first option is surgery and a lighter course of radiation.  They'll take out the primary tumor (with a surgical robot) and take the lymph node with its two metastatic tumors.  This sounds preferable, as radiation can have permanent effects (dry mount, trouble swallowing, bone damage).  This option is open if the PET scans shows that the cancer is limited to the sites we know of, and the lymph node tumors are well contained (i.e. the cancerous cells haven't leaked out).

The second option is chemotherapy and radiation (higher doses than option 1).

Emotionally, we're all feeling the stress in different ways.  I think my doctor visit yesterday increased the reality of the situation for me.  And the biopsy tomorrow is taking a toll on all three of us.

We've been telling Jack as much as we c (as appropriate for his age), and he's expressing his worry and his fears really well.  Jane's been doing a wonderful job talking to him about it, and he asks me every day how I'm doing and if he can do anything for me.

Jack's school has been wonderful too.  The school councillor, Sarah, send us this email yesterday about her talk with Jack:

I wanted to share what a wonderful appointment I had with Jack
today. He shared with me his thoughts on cancer, what it is, and also his
insight into how "when you're in a family you understand how other family
members may be feeling at different times because you really know them"
(those were his sweet words). We talked about how he recognizes Hans may
not be feeling up to doing certain games (tickle game especially) and that
Jack can be a social detective and know that maybe his dad is not feeling
up to active games before asking to show he was thinking about his dad's
thoughts and feelings. We talked about how he could show that he
understands (not by accepting "no" to his request to play) but by asking a
question that would let Hans know Jack was thinking of his feelings like
asking to read his dad a story, or do a quiet board game, or give his dad a
snuggle. He also shared that he has a lot of worry, and when I asked him if
sharing with people he knows love and care about him (he named you both,
me, and Ms. Taylor all as safe people) is helpful he said yes. I asked if
he would like to visit with me to share and he agreed it would be good. I
will check in with him tomorrow too, as I know this is a big day for your
family. Please let me know how today goes and if I can be of any support
for you too at this time. I would love to have a check in with you in
person too once you have some clarity and insight into treatment schedule
and the like. My heart goes out to you. Thank you for reaching out and
trusting me to work with your wonderful family.

I've been touched and humbled by all the love, good wishes, and prayers being heaped upon us.  So many offers of help and comfort.  Thank you all, and keep it coming :)

Big Love,
Hans

The battle begins (and not the one you think)

I just got a rejection letter for my PET scan from MedSolutions, a company I've never heard of which is apparently affiliated with my insurance company (Aetna, via Starmark, a wholly-owned subsidiary of Trustmark Life Insurance).  I'm in the process of moving to UCSF Cancer Center for my treatment, since they're one of the best cancer treatment centers in the country.  If I'm lucky, they'll have more pull with the insurers than I have and I won't have to sue the bastards.

The part that really burns me is that I have the means and ability to fight for the treatment that my doctors think is best.  What happens to the people that don't have the knowledge, the means, and the ability to question and to fight?

Why do we still have these for-profit middlemen in the insurance business?*