D-DAY: Down to Business

OHSU-Kohler-Pavilion

OHSU-Kohler-Pavilion

Matt got us to the hospital on time for D-Day,

…in spite of OHSU’s confusing, hilltop campus. It’s astounding; can you believe they built a hospital up here? It was quiet, dark and cold at 5:30am. I arrived clean (inside and out, thanks to that special body soap) and dressed simply and purposefully. Matt & I were a team, at times a comical duo, and in spite of the D-Day reality of the procedure, it was little worry to us as we bustled to gather belongings we would need at the hospital for about 5 days.

wet_dog_nose

Wet dog nose

After admitting, the nurse took me back to the pre-op waiting room and gave me moist, medicated towels that I was supposed to meticulously rub over my whole body. It felt like dog nose on the skin because when it dried, there was still an invisible tacky residue. “I’ve never, ever been this clean,” I thought.

Cancer_Institute_Team

Knight Cancer Institute Team

Each one of the surgical team came in at different times to introduce themselves, describe course of action for this procedure, the potential complications and answer questions. The procedure would last 5 hours, including:

1) Resection of two tumors on the outer tips of two lobes of the liver

2) Visual exam and surgical fondling of the whole liver to check for unusual masses or spots.

3) Finally, an ultrasound of the liver to look closer and deeper into the tissue than the hand and eye can.

And then I would wait in the recovery room for an hour or more for monitoring before I could see anybody, then I will see Matt and my parents before getting moved to my recovery unit. After that I will either go to the ICU (intensive care unit) for over-night observation (pretty routine in liver cases, but not always necessary), or I will go to a regular old room. IV’s placed, then the Anesthesiologist, a big teddy bear with jovial grin, went over his whole procedure.

All set to go

Matt & I said our goodbyes, and I was wheeled gently back to the OR (operating room) where the whole team was bustling about confidently getting ready for this complicated surgery. Some were familiar from the prep room, and others were introduced to me as they helped me shimmy to the operating table, and I faded out.

Again, both Matt and I have been through this more than we care to discuss, so a whole lot of mystery has been cleared up by our personal experience. We knew what to ask, and to some extent, what decisions to make.

Later on

I learned that the procedure was simplified because there was nothing new and unusual found in the liver, the chemo and complimentary treatments shrank the tumors down so he could remove the tumors with “good margins” (tissue surrounding the tumor is taken in case cancer cells traveled outside the tumors, and still leave large portion of my liver!

OHSU-Kohler-Pavilion-terrace

Many walks along this terrace

From Recovery, I was moved into a regular old room! But I guess it was not in the cancer ward, so the second night I was moved up to be among my kin. Not a stellar view, but where this hospital is situated, all kinds of cool weather effects happen all the time. I saw a double rainbow, lots of rolling fog banks between the trees and buildings, what a great place for pictures! The food is pretty good (!!), my expectations were low, so I am very impressed. Matt stayed one more night, and the lack of privacy drove him nuts, he couldn’t sleep, and he felt a cold coming on. But he was so gung ho to be my personal caretaker! Jeez, really, there will be plenty of time for that at home, Sweetie. So, we decided the hospital could take care of me, and my husband could be his own wife and recuperate at home.

A successful D-Day down and behind me! Each day is easier, and I can see progress. As long as I can pass gas by tomorrow, I can go home.

Tee hee. Truly, that’s what I’m waiting on.

HAPPY NEW YEAR UPDATE

Hello All!

I haven’t updated publicly on where I am in the cancer treatments in a really long time. Sorry. I’ve been avoiding the FB rabbit hole while maniacally getting Hollarday preparations done. Tee hee.

Trust me, although I’ve had the month off from chemo, I’m still dealing with some medical stuff, nothing serious, just some discomforts and inconveniences!

By all accounts (family, friends, doctors) I am doing really well. I feel well; exercising, healthy appetite, seeing friends and celebrating *most* holiday events. Woohoo!

Right now I’m looking at surgery preps given by my complementary care oncologist – 4 pages of diets, supplements, etc, before and after surgery. Whoa… well it’s all good for me at least! Starting to think about what I will need after surgery.

The surgery is scheduled for Jan 8. No anxiety yet (that should come a day or two prior). Actually, it’s all going according to my plan, so I am very comfortable as things are. Wednesday, the 7th I sit down with the surgeon and finalize things. That’s it! It’s up to him after that! No pressure, Dr. Billngsley!

I’m expecting the very finest surgical work and exemplary follow-up care! I am doing my best, after all.

happy new year

Happy New Year and Ald Lang Syne

SECOND OPINION FOR SURGERY

Second opinion brought to you by… Barack Obama!?

Wow, oh, wow. That was a reeeeally long week! There was one week scheduled between the first surgeon meeting and the 2nd opinion, and when you’re not having fun, time does NOT fly by.

So, the 2nd opinion meeting was with a specialist in liver surgery at OHSU, Dr. Kevin Billingsley. First impressions told us we like this doctor. He was very easy to be around, inspired security and confidence, had a slightly different approach than the first surgeon, yet it made sense to Matt and I.

~ AND get this ~

President_Barack_Obama

barack-billingsley

You can’t deny, when you talk with him for a few minutes, that he looks, acts and sounds like President Barack Obama. No kidding! The pictures do not show the resemblance like meeting the doctor face to face, but his manor is direct, attention undivided, he expresses himself clearly and thoroughly, and he has a very friendly personality. What do you think? They could be brothers! Just sayin’. Barack Billingsley… or Dr. Billingsley Obama… Heh, a little fun.

The Approach

Dr. Billingsley’s approach was slightly different from Dr. Sheppard in that he prefers starting out with chemotherapy, a FOLFOX systemic chemo for 1 ½ months. This would zap me from head to toe and get all the rogue cancer cells in hiding. Next, surgical resecting of the liver, and finally a follow-up with chemo. This approach will A) shrink the tumors making surgical removal easier and more effective, B) At surgery time he will be able to see how well the tumors responded to the chemo and change to a more effective regimen for the follow-up therapy, if necessary.

Dr. Billingsley was very reassuring and optimistic about the recovery from this procedure being much easier than the colorectal resects I had done 2+ years ago, because that was a much more complicated surgery, more parts of my system were involved, for example, and there was more risk of infection. With this liver procedure, not only will the liver fully regenerate to it’s original size and function, but the odds are better now (compared to the last time, even) that the cancer will be abolished for good. So, that’s good news, too.

Next, I have appointments with two oncologists, in separate offices, set up for two weeks from now. Honestly, I believe we need more doctors because this waiting-around thing is for the dogs. It absolutely does not fit into my plan!

Both Matt & I feel pretty comfortable with this new approach, and the Dream Team is coming together!

Also, an update on the oncologist in California – he received my formal poison pen letter regarding my missing blood test results that would have warned me earlier of the cancer recurrence, and he called me immediately. He was extremely regretful that the error happened, however he explained that the results were nowhere to be found in his office, and upon ordering a copy from the testing lab, there was no doctor specified on the records for return of the test, so it never got sent and it fell into a black hole, nobody noticed. So it looks like more of a slip-up on the lab’s side. *Sigh* again, water under the bridge, and I gotta make sure that everybody is doing their job!

GOOD NEWS OR BAD NEWS FIRST?

Which do you want to hear first, the good news or bad news?

Now that I’ve learned definitively that I have a recurrence of cancer in my liver, that I am not “in remission” anymore, that I’m facing a new episode including surgery, chemotherapy, tests, hospitals, nurses, complications, recoveries… setbacks.

“Oh my God – What the FUCK?… I mean… what the FUCK!!?” Chris, my brother-in-law, echoed the disbelief already in Matt’s and my minds when we told him over the phone of the new diagnosis. We saw him and his daughters off to the airport just yesterday, after a weekend of sunshine and great sunset meals and river playing. Everyone one was healthy and fine yesterday. Today is grim business for just us two.

Matt and I have been through this once before. Getting the diagnosis, calling doctors, family, insurance, researching everything the doctors told us for hours and worrying about what’s ahead. The difference is that this time I have WAY better insurance (thank you Obamacare!), being more familiar with the process, we are better at putting the dysfuctional worry aside. Still, at bedtime the worry and unknown inevitably come back in the dark and worms around in our minds for hours.

I always take THE BAD NEWS first:

So the back story is, per doctor’s orders, I maintain quarterly blood tests, coordinating with my oncologist in Santa Monica whom I have worked with for 2 ½ years. I saw him last in January 2014. I also maintain annual colonoscopies and CT (Computed Tomography) scans per my new gastroenterologist’s orders. All have shown good results, and to my knowledge I have been in remission for over two years. Back with the original 2012 diagnosis for colorectal cancer, I had a CT scan reveal two liver cysts which concerned the doctors that they could be metastases from the rectal tumor, yet they could also be innocuous, a normal liver cysts that lots of people have, a reaction to birth control pills or some other chemical, which are unlikely to become threatening. The 2012 PET scan showed that these spots were of no concern.

*Positron Emission Tomography (PET) is a test where a radioactive isotope introduced in the blood stream shows thermal “hot spots” where active cells appear illuminated in the results, whereas CT, or CAT, scans use a large number of 2-D radiographic images to create a 3-D image of the inside of the body.

Last week, during my second annual colonoscopy check-up, I had a precancerous polyp removed from my colon. Nothing unusual or concerning, these are common and easily removed with no further action needed. The CT scan, a few days later, showed two “nodules”, or solid masses, which were new since last year. This result combined with the most recent blood test revealed elevated CEA levels (a cancer marker), caused my GI concern. He ordered a PET scan and recommended an oncologist appointment to discuss the results. Anxiety!

The scan was on Friday afternoon. When Matt and I showed up for the exam, we were surprised to find that it was a full-body scan. Was this a mistake? The spots were on my liver, after all. But it made sense even before it was explained; of course, if the cancer could spread to my liver, then it could also spread to the lungs, the brain, the bones, anywhere. I happily did the PET, then went home thinking, this is all a big joke and they’ll see that it’s nothing! Just the same old cysts, maybe they haven’t looked at this year’s and last year’s scans side by side? I’m healthy and happy in my life now.

Then there was a bleeping holiday weekend and most offices were closed on Friday, and all offices were closed on Monday, and it was hard to get a hold of any doctors or staff to ask questions, even to make appointments. Ok, so I got an appointment with the oncologist for Tuesday, thank goodness. All we wanted to know now was what the PET results were.

liver

The PET showed very clearly hot spots where the two liver nodules were (meaning activity, meaning cancer!!). Do you know how big a liver is? I really had no idea. It’s pretty huge! Anyway, there’s one nodule on the left and one on the right. The one on the left (or my right) is 3x3x4 cm, and the other is 2.5cm.

Holy lordy lord! That sounds really big to me. Considering we are talking one year ago that there was nothing but the cysts, and the CEA level in the blood was not alarming until now, either, these nodules sound really unreasonably large. Listening to what the doctor was telling me, all the worries I’d had during the night over the past weekend were coming back, and as I tried to focus on his words, I was intensely aware of my heart rate and how sharp my awareness was. Especially for Matt, who I knew was sitting next to me sweating outwardly and panicking inwardly.

THE GOOD NEWS IS:

frowny-face-high-blood-sugarThe nodules are compact and “localized” meaning they will be easily removed with surgery, and I will “still have a lot of liver left”, said the doctor. “Oh good!” I thought, although I like my whole liver, ayayay… frowny face.

There are no other occurrences than the two liver nodules.

The cancer has not proliferated throughout the liver, in which case they wouldn’t even attempt surgery, just attack with lots and lots of chemo.

So, I guess for a bad scenario, it could be worse! The recommendation of Dr. Look, the oncologist is to operate immediately to get the cancer out, and then they will know exactly what kind of cancer they are dealing with and will design a chemotherapy for it. This one will likely be systemic rather than targeted, so I’ll be shopping for wigs and warm headwear.

Now, I do have a second opinion with another oncologist scheduled for later this week, so, more to come.

Oh, my poor Matt. When we met I was the perfect picture of health and vitality. I had few needs, was a great friend, partner, lover, playmate, I added value to his life by being his foundation, loving unconditionally and taking care of anything he needed the best way I could. Now I feel like a real bummer! A disappointment. I expected that I would be healthy and strong into old age, take care of my darling husband, my parents, anyone else who needed me, and I’m being taken care of, now, in my 40s. Although I am staying positive, it’s hard not to not go to the dark places.

What the heck is my body doing? This is completely out of the plan! Not that there was a “plan” per se. I feel alienated from my body, like it’s letting me down, mysteriously letting illnesses get in, getting weak. But it’s my body. It’s life. And just when I was getting everything back in sync, seeing a NP, a Naturopathic Physician, who is helping me reestablish an equilibrium with diet and lifestyle, peace of mind, etc. Sometimes, she said during a recent appointment, these diseases are not caused by immediate environment, or just the previous generation or two. These diseases can go back 3-4 generations to the conditions our ancestors experienced and telegraphed through the generations. Also, as was brought to my attention,that the ancient Egyptian remains show evidence of cancer.

Makes sense to me, because how could some of the healthiest people still get terminal illnesses? The answer is, it’s beyond them. This notion, at least, allows me to believe I really didn’t do anything “wrong”, and I can blame my ancestors. Hee hee. Small comfort.

Good news and bad news aside, ONWARD! A new chapter begins.

STITCH INFECTION REVISITED

Infected sutures from my prior surgeries are creating a complication today.

My next surgery happens tomorrow morning.

Let’s back up.

The 3 weeks of antibiotics prescribed to me took care of the infection in my hernia area for a few days. Then it came back. GRRR! Well, I had to expect it would happen that way, as it was foreseen by the fates. So, less than a week after the antibiotics ended, a pimple formed where an old one was. Then over time a redness appeared in the hernia scar itself and grew to a large pimple and opened up again. Ok, we’ve got to take care of this. Now.

My hernia surgeon is not on my new insurance plan, so I scheduled consultations with two alternate surgeons to get their opinions. Their opinions were in agreement on the approach to clean out the sutures and mesh from the hernia repair, thank goodness, and I scheduled a procedure for tomorrow! Rest assured, it should be a minor procedure. My surgeon wants to put me under, so he can really get under the skin and make sure he understands the problem and gets rid of all infected material. Ok, I don’t really want to be aware during that. Very likely that he won’t replace the mesh.

The hernia may not come back, but it could. It could come back tomorrow or it could come back any time in the future. Then it can be repaired – again – at that time. But tomorrow it will be an in-and-out procedure. I will come out of OR (the operating room), then once my vitals prove stable I can go home, probably mid-afternoon, then back to business the next day. Ok, I can deal with that.

The surgeon who provided the second opinion cautioned, a full fix on this hernia could take “a while”. Yeah, I kind of figured. It’s quite amazing how complicated these hernias can be to fix. You could have a handful of surgeons review the same situation, and have a handful very different opinions on how to fix it. There are lots of material and technological options for surgeons to use, and there are a lot of body types among patients. Every patient will respond differently to a chosen treatment.

So, it seems to be a moving target.

Wishes of luck will be appreciated! I will update here once I am out.

PROGRESS REPORT

Remember in school when we got progress reports to show our parents how we are doing?

It’s time for a progress report!

All things considered, I can say that I am doing very well indeed. I wish I were closer to the end of my medical bill horror show, but alas, it won’t be finished by year’s end like I was hoping. Mostly the expected stuff I suppose; nobody wants to kiss off their money charged, but like I’m trying to make clear to the medical billing departments, “You can’t squeeze blood out of a turnip!”

It doesn’t help that the insurance company before the procedure was performed did not disclose to me that, “Oh, your hernia surgeon, medical team and procedure are all covered, *but* the hospital is not!” So, I owe a quarter of the bill on that procedure which *should* have been covered… argh! But I won’t bore you too much with the details.

Besides that…

…with a few minor modifications post-hernia, I am back to my old ways. The ‘modifications’ I am referring to are things like not using the torso for ANYTHING besides standing up straight. Don’t want to undo that new hernia mesh. Also not lifting anything. Sorry Matt, packing I can do, but moving boxes is up to you, Babe.

A follow-up blood test at my oncologist’s office gave a clean report, meaning I am still in remission and starting off on the right post-treatment track.

I had a bit of a horror the other night when I looked at my poor scarred belly, and noticed a new bump. Ohhhhh. That’s not good. Even Matt had to admit that it looked new and a little unusual. This is the paranoia I referred to in this post. Well, since that day, nothing has changed, fortunately. I go on wearing my “belly bra” and hoping that it won’t get worse, or that it was just angry that day and will go away.

plumbing_post_cancer

New Plumbing

Bowel habits are, well, different forever, but I will definitely grow into them. The list of inconveniences in order of ‘annoying’:

– stains in the panties!
– I don’t know whether gas means *just gas* or if something comes with it.
– I have to “go” soon after a meal… 2 or 3 times.
– prickly butt when I’m hiking (for some reason thorough wiping isn’t as effective as it once was). Matt suggests a toilet paper barrier.
– bladder infections: a new phenomenon to me! Arrgh! And dang if it doesn’t happen just before a long road trip, every time so far.

So, in regards to the new plumbing, there is nothing that I can’t live harmoniously with, and there is nothing to say that it won’t get better with time. Still the evidence shows that I have experienced life-long changes this year that the average Joe/Jane does not have, and now I am among an elite group of ‘special’ individuals who have to do laundry more often than average.

The rose-colored short story is: Life is good, and every day is a bonus!

HERNIA SURGERY: GOOD / BAD NEWS

Hernia surgery results showed good news and potential for bad news.

The follow-up visit with my hernia surgeon went as well as can be expected.

Dr. Reger explained that there was a split in the ‘posterior muscle wall’ (the inside layer) which allowed my guts to push out between them. Those muscles tensed and scrunched to the sides. The ‘anterior muscles’ (the outside layer), however, did not break, but stretched and gaped with the pressure of my guts. Voila, the pot belly. Through the incision, Dr. Reger had to reach in and grab the contracted muscle and forcibly pull each side back together, stitch, and reinforce with a strip of mesh. He illustrated all of this with his hands in the air, so I do not have a good visualization myself, let alone a diagram to share with you. However, I do trust Dr. Reger did an excellent job.

I got two pieces of news, good and bad.

The good news first– Healing from the surgery is on track and everything looks as it should by now. Activities I can participate in include walking, hiking, taking it easy and wearing a compression belt (affectionately referred to as my girdle or belly bra) to keep my guts in place. After one more week I can add:

M&M-Light-Hike

Light Hike

– more walking and hiking
– light swimming, to keep muscles stretched
– light stationary bicycling, again to keep muscles stretched
– light weight lifting
– taking it easy some more

In six more weeks, I will add activities as my body tolerates like bike riding, lifting, strengthening and other exercises light on abdominal use.

The bad news – The fix should be sturdy and strong, however, we do not know what caused the incisional hernia in the first place. Dr. Reger cautioned that the stoma incision next to the hernia incision (closed up on July 14, 2012) could give way to another hernia. In other words, I should watch for signs of a hernia over the next two years. When the hernia repair was done a few weeks ago, the tention added to bring the split muscles back together could add to any weakness at the stoma incision. If, he says, a hernia is caught early, it is an easy fix. If it does not happen in the next two years (!!), then it probably won’t happen.

ACK, I say! That’s two years of paranoia! Ie. “What’s that I feel?”, “Is this normal?”, “Should I call the doctor about this, or will it go away?”, etc. When I thought all of this worry and anticipation was over, it has been delayed! Well, it is nothing new given the past year’s worries. Besides, I will take that over cancer concerns anytime.

Dr. Reger has a very conservative approach. I admire this and chose him for that reason. Therefore I will stay on the conservative side of recovery because to face another surgery is unappetizing, and, boy, I do not want to start over on insurance deductibles if I can help it!

Recovering from hernia surgery takes sometimes years of incredible patience. When you feel good, you still must resist strenuous activities.

FOURTH AND FINAL SURGERY – DONE!

This was my fourth, and hopefully final surgery – EVER!

Disclaimers: Silly me, one of the things I left at home was my cell phone charger, so I’m on limited phone use at the moment. Also, since my first surgical hernia consultation I have been so busy that I have not done an update on the second.

Well, the second consult went well, and I scheduled a date with Dr. Vincent Reger at St. Vincent’s hospital for October 15. Quickly, Dr. Reger had a whole different approach to solving the hernia problem than Dr Tseng. He had a plan A, B and C, depending on the condition he finds upon entry.

A) No mesh – he would enter with a full incision, clean up scar tissue and hernia, then stretch the abdominal muscles together and stitch them up. Least invasive, least amount of material. He believes the muscle material will heal together

B) Thin strip of mesh – if muscles do not come together, or if they come together too tightly, or the quality of the muscle is too hard to work with, he would introduce mesh on the outside of the abdominal wall. Using little material, this would allow a looser muscle closure and use mesh to reinforce the closure.

C) Bridging – If the muscles will not come together, or the quality of muscle tissue is too poor and will not come together at all, the mesh would be used to bridge between the two sides.

The surgery date was yesterday:

Well, it was a roller coaster ride. Matt & I began the day at 5:30am and were out by 11:00pm! The facility was very nice, everything looked new. The nurses were very slow with any request, which I have come to expect in a hospital setting. The surgeon was energetic and quite darling, the anesthesiologist was delightful in his rainbow-colored cap. It is good to be first procedure of the day!

The plan was that I would be put under a twilight anesthesia, so I could witness parts of the procedure. Well, I don’t remember a dang thing, and I was kind of looking forward to that experience.

The procedure went smoothly, although the surgeon found the hernia hole larger than expected, and so had to move to “Plan B”, involving surgical mesh. In recovery, I told Matt, “You have four eyes,” He asked me how many nostrils he had. I said four. My eyes didn’t want to focus, nor want to stay open. I also had a bit of trouble keeping things down when I moved around, ie. getting to the bathroom & back.

So I slept through the afternoon and evening. After that, I felt that I could make the move home. I could finally keep my pain pills along with a couple of crackers down, so Matt & I arrived on my parents’ doorstep at 10:30pm. No more $750/day insurance copay, whew! Woke a few times with terrible pain and soreness, but was able to get on top of it with the assistance of prescription pain pills, and in the morning felt fine again. How quickly things can change!

Matt & I woke in the morning to my mom’s Swedish pancakes, and what HEAVEN!!!

Things are progressing well thus far. Thank you all for your thoughts!

 

WAS THE J-POUCH SURGERY SUCCESSFUL?

Yes! Successful J-Pouch Surgery!

Matt & I are celebrating many things:

– Successful j-pouch surgery!

– Successful bowel movements!

– Shedding of all bags and tubes!

– Early discharge from the hospital!

I am outta here!

Good bye $500 per night room (which we got bumped to for free).

Good bye all-white hospital meals (which you look forward to when you’re hungry and weak).

Good bye lovely nurses who take vitals every 6 hours.

Good bye beds that heave and machines that go beep during the night.

Hospital-food-white

White hospital food

My blessings to all who continue to fight for their lives and are forever entrenched in the medical system. At the hospital I met and saw many, and am familiar with lonely and dreary days when you don’t know when you will go home.

Upon leaving the building, I will be on track to an active, low-stress lifestyle.

TWO BAGS DOWN, ONE TO GO

Two bags down:

Ileostomy bag – removed at surgery. Urine bag came with the surgery – removed this morning. One last bag, the IV, should be gone by Saturday. J-pouch (new rectum) – soon to come online.

I’m here at the hospital and recovering in peace and comfort. I was upgraded to a first class suite because the oncology ward was full. Nicer colors, nicer art, quiet and peaceful. The liquid diet so far is settling, and I should expect my lower bowels to be working by later today or tomorrow. The only question with that happening is if a blockage develops in the intestines at the new seam. So far, no sign. Yippee!

creamy_mush_liquid_diet

Creamy mush

Much better than last time, this procedure was far less invasive, only dealing with turning the ileostomy back in and reattaching it to the lower intestine, all done laparoscopically (through a little tiny hole in the abdomen). The whole procedure went smoothly. There were a few bouts of nausea and some pain until the medications were balanced, and now feel quite energetic. I’m on to “full liquids”, meaning creamy stuff and mush.

What do they put in this stuff? It’s not the creamy mush my mom used to make.

Back pain of the previous few days has subsided, yet turned into back discomfort from lying in bed for too long. I’ll take it, the discomfort is better than the pain was! Compression socks inflate around my legs every few seconds to keep my blood vessels from clotting, and I exercise my lungs with one of these:

spirometer_inhale_exercises

Spirometer

The incentive spirometer is assigned to exercise the lungs after a patient wakes up from anesthesia. The lungs have a tendency to fill with fluid, then develop bacteria which causes pneumonia if they are not exercised. I use this crazy-looking device every hour by inhaling air from the tube.

So, the update for the first day is: doing good!!!

Looking forward to shedding the last ‘bag’ (IV) and to using the new ‘j-pouch’ (new rectum)!

post_op_recovery

Hello everybody!

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