Out with the new, in with the old

Today marks 1 year and 5 months since the official confirmation of my cancer diagnosis.  I am still cancer-free; the most recent scan on 12/9 was clear.  The longer I live without a recurrence the better the chances that it won't come back.

In 2017 I'm (hopefully) getting rid of the new, anatomically speaking, and getting back to my old self.  If all goes well I'll be almost all the way there on Friday, February 24th.  That is when I'll have the surgery to reconnect.  It's also my son's 5th birthday, so, auspicious. 

There is no guarantee of success.  It could go a few different ways:

1) they open me up and can't see what they need to see, thanks to scarring, adhesions, etc. - they'd close me back up and that's that; or

2) they can see what they need to but there isn't enough length left to reconnect - in this case they'll remove my colon all together and reconnect using my small intestine instead; or

3) they can see what they need to, there's enough length, they reconnect, reversing the existing colostomy in the process, and give me an ileostomy for a few weeks while everything heals.  The ileostomy would be reversed 8-12 weeks later.

#3 is ideal.  #2 would be different but doable.  I wouldn't be happy with #1, but if it happens, I'd accept it in time.  Since scheduling the surgery I've become more frustrated with having an ostomy.  I think that means attempting the reversal is the right decision.  My surgeon gives me a 90% chance of success.  I would have done it for 50%.

Giving Thanks

Today I woke up, not in pain, without cancer, in a warm bed in a warm house full of my family. 

Last year we had a small, almost-no-cooking Thanksgiving as I couldn't travel due to fatigue from treatment (it was day 4).  This year we are all healthy and we opted for a stay-thanksgiving anyway, because it was so relaxing.

Last year I had to invest in a super-thick, super-warm pair of mittens so my fingers wouldn't get all weird during my walk to the office (evil drug side effect).  This year there is no cold sensitivity and the peripheral neuropathy I experienced in the aftermath of treatment has left my fingers entirely. It's still in my toes but I can tell that's going away too.

Last year I didn't really know how I would get through it.  This year, I'm through it.

Today I woke up, not in pain, without cancer, in a warm bed in a warm house full of my family.  The end.

Planning for Normal

At the risk of jinxing myself, I made an appointment with my original surgeon for mid-December.  My next scan is the week prior; I'll have reviewed results with my oncologist and will know if anything has come back or if there are any other concerns that would require additional treatment, and thus delay surgery.  If all is well I hope I'll be able to schedule surgery.  My scan mid-June was fine; blood work in mid-September was fine; additional blood work last week was also totally normal.  All signs point to... normal.

It has been bliss not having any treatment this fall.  I cannot forget the dread of chemo, or the pain of radiation, and every day I don't have to do either one is marvelous.  It was the right decision to wait a bit for surgery.  I have all my energy back.  I even catch myself walking fast and getting annoyed with the slow sidewalk people again.  If I'm lucky, I'll be perfectly healthy going into this next and hopefully (second to) last procedure before we can pretend this never happened.

I manage projects for a living and managing this hasn't been all that different - managing both at once has proven to be quite ordinary.  I've already planned work around an ideal date for surgery and another short medical leave.  And I planned that assuming a successful surgical outcome, which would mean one (really) last procedure 2-3 months later, which would mean I'm fully recovered before a great big summer road trip to visit lots of family in the south.  Priorities are in order; all systems go.

Back to work, revisited

One year ago yesterday, I went back to work, post cancer diagnosis and post great big surgery.  I found this note on my phone from that time as I was about to start chemo, posted here without further comment:

Eat before infusion today... since running late...? YES

Infusion late b/c labs late? MAYBE, still get food

Is overall plan still the same? Yes 12 courses, radiation towards end maybe, typically daily for 5.5

Will treatment affect remaining healing from surgery? NO

What are the drugs?

Folfox- 5fu, leucovorin, oxaliplatin

Anti-nausea first - zofran 72hrs dose

Compazine - any time needed

Can be constipated first few days (zofran)

Diarrhea after that 

Side effects?

Fatigue

Cold sensitivity- from oxali

Hair loss , less common

Blood counts

Mouth sores- bioteen, water & baking soda

Skin - sun sensitivity, chapped hands/feet

Weight loss - concern? Minimum for chemo?

Fine with current

Activity- what I can tolerate?

No specific restrictions 

Driving ok?

Ok but not from chemo

Flu shot?

Right before chemo is ideal

Tylenol, Advil still ok?

Next appts- de-accessing, next course...

Showering with pump??? NO says nurse who accessed port;  

Sleeping with pump???

Clothes with pump???

What else re: pump...

The Cost of Cancer, updated

It has been one year since my post-surgery pain- & insomnia-induced rant about health insurance.  I continue to tabulate all my cancer-related expenses; it's been a good six months since my last financial update.  Since then, the Neulasta billing problem was remedied (finally), I finished chemo, I had radiation and a scan and a procedure, but I haven't seen that many benefit statements.  I haven't seen anything related to the radiation, and still only saw the one set of charges last fall that appeared to be for chemotherapy.  I won't pretend to understand how any of it works.

In support of continued transparency, here are the numbers as of the last EOB I received, as of 8/19/16:

Chemotherapy                  6,645.22
Chemotherapy-related  126,589.98 (Neulasta)
Clinic/Consultation          1,076.00
Emergency Room            1,949.00
Inpatient                           6,687.34
Labs/Scans                    31,457.00
Medical Supplies             2,059.57
Surgery                          16,516.50

TOTAL                        193,159.53

And an updated out-of-pocket breakdown:

Clothing/supplies          169.82
Copays- appts               275.00
Copays- scrips                41.47
Food                             418.57
Parking                         620.00

TOTAL OOP             1,524.86

Wicked-sobering grand total:     194,684.39

Notice that the Neulasta is a solid 65% of the grand total.  I found that especially striking in light of the recent controversy surrounding the Epipen price hike.  I'll bet a significant percentage of patients undergoing any chemotherapy regimen end up needing Neulasta to support their immune systems.  I'll bet a not significant percentage of those patients have the miraculous health insurance that I do.  It boggles the mind.

More walking - support my Jimmy Fund Walk!

I'm doing it again -- exercising and raising money for the fight against cancer!  This time I've registered for the Boston Marathon Jimmy Fund Walk.  I've upped my goal since the FitFest back in May.  Now I'm including an "allocation" for my two surgeries as well.  My new default goal is $2,000: $100 for each surgery (2), round of chemotherapy (12), and week of radiation therapy (6).  Please visit my fundraising page here:

http://www.jimmyfundwalk.org/2016/eemthomas

I opted for the half-marathon 13.1 mile route from Wellesley to Boston.  I've been doing a lot of walking since ending treatment at the end of April, but 26.2 miles felt like it would be too much all at once.  I'll work up to the full route next year... baby steps.

I am also trying to get back into a biking routine.  I did about 4 miles yesterday and that was plenty.  It was only my 2nd time back on the bike since diagnosis.  Hard to believe I used to ride 18 miles a day, 2-3 times a week, from May - October for my commute to work.  I'm still not sure I'll do a commute by bike this year.  I would like to, but I might talk myself out of it... the streets of downtown Boston will surely be as challenging as they ever were.

And next year, my goal is the Pan-Mass Challenge.  I've always wanted to do it and know many people who have done it multiple times.  We'll see - baby pedals!

Test results from afar

You might recall that way back in June I had my first post-treatment CT scan.  You may also recall that the results were excellent: no indication of any recurrence, anywhere.  That was a good day.

I have also been due for another diagnostic, a colonoscopy, which I finally had about a week ago.  I never had one when all the nonsense started.  They tried the day after I was first diagnosed, but the tumor made it impossible (early blog post on that, tons of fun).  I had a sigmoidoscopy but it was primarily to get a tumor sample for pathology.

And so, there I was, post-treatment, cancer-free, talking about when I could have surgery to get me back to normal anatomically, and lo and behold I've never had a colonoscopy!  So I had one.  They can do this via the ostomy and it's actually much simpler.  However I got really lucky and they checked me out from both directions.  I am now a master of conscious sedation, by which I mean no safe amount of "sleepy medicine" puts me to sleep anymore.  I was a bit out of it, but pretty aware of everything, for better or worse.

Thankfully everything was for the better.  My prep was good, everything looked fine, except for one slightly suspicious area in the hepatic flexure, where the ascending colon turns right and becomes the transverse colon (by the liver).  The surgeon doing my procedure took a sample but told me she wasn't overly concerned.

I wasn't overly concerned 17 months ago when my stomach issues started, so I wasn't all warm and fuzzy with this.  I wasn't overly anxious either but was leaving for vacation (where I am now), knowing I wouldn't get results for a few days, and it was hard not to think about it.  Here on vacation the wifi is spotty.  I can get email usually - and got the "you have a new test result" from the patient portal this morning - but websites and such are hit or miss.  We were busy vacationing all day so I didn't try logging into the portal until a few minutes ago, but it was a miss, over and over again.  Luckily the resort has one public computer for guest use and I was able to connect there.  The result:

"Colonic mucosa within normal limits."

Great big sigh of relief.  Back to vacation!