Ultrasound Checkup

After doing the whole body scan, I went out and had a cheese burger and fries. Over the next three days, I gained back all the weight that I had lost. (It was worth it).

Cheeseburger and fries
Cheeseburger and fries

The day after the body scan, my blood was drawn for testing. I had forgotten to come in for the blood work on Monday, the day before first injection, as the doctor wanted to see the thyroid levels in my body before going through the procedure. Oops.

After a week or so, I got a phone call telling me that I needed to schedule an ultrasound as the doctor saw that a node/lump/thing (I don’t have my medical record for the actual term) was getting bigger, indicating possible cancer…again. If the ultrasound showed that the area could be cancer, the next step was another biopsy and then surgery, if the result tested positive for cancer.

Naturally, I wasn’t happy about this and later called my insurance to see if I would have another choice of surgeon if I had thyroid cancer had returned.

I scheduled the ultrasound appointment and when the time came, went in for it. The jelly they coated my throat was warm. I used lots of tissues to remove it when the technician was done. I always miss a spot, usually below an ear. The jelly doesn’t feel as nice when the jelly is cold.

A week or two later, I got another call from my doctor. I was told that the lump/tissue thing was stable, so no biopsy was needed right now. I was told to book another ultrasound appointment in 6-7 months to check on it again.

At this point, I’d rather have them take it out now, so it doesn’t have a chance to grow bigger or into cancer. Also, I’d rather a surgeon cut a different opening to remove that tissue than the same spot in front of my throat. The scar in the front of my throat is slowly disappearing. I don’t want to make the tissue weaker or cause a permanent scar.

My adventure continues…

Weight Loss from Low-Iodine Diet

I guess if you needed a mandatory way to lose weight, the low-iodine diet is the answer. No diary, no salt, no milk chocolate. Sure, you can have non-iodine salt, but how can you be sure that other companies sure that instead of iodine salt. I didn’t take any chances. I lost 6-7 pounds within two weeks. My stomach was flat again. (Okay, I enjoyed that while it lasted (2-3 days) afterI got back on my regular diet of nearly everything).

You can have alcohol on the low-iodine diet, but it’s not recommended, as your body is essentially detoxing. I tried drinking a beer. I had a few sips and dumped the rest. It tasted so gross. (It probably doesn’t help that I really don’t drink anyway).

A day or two after the whole body scan, I got a call from my doctor telling me that I may have thyroid cancer again. (Grrr….) There is an uptick in thyroid something. I’d have to look up the test results they sent me. The plan is to continue with the thyroid ultrasound and then another biopsy. If that comes back positive, then I’m back under the knife. I’ve already decided that I want a different surgeon, and that I’m not doing that radiation treatment again. If it didn’t work the first time, fuck this.

The six months neck ultrasound – low iodine preparation – oh joy!

Once you have your thyroid removed from cancer or its death, you’ll learn to have a medical fetish or a grow a fondness (or dread) of people in scrubs and jackets.

Looking over the sheet telling me that because my “thyroglobulin has remained undetected, however Tg-Ab present,” the medical staff is planning a I123WBS (meaning Whole Body Scan) for me. Oh joy.

So here we go again with the low iodine diet for two weeks.

Pro – I get to loose some weight that I’ve gained from not exercising as I should be.

Another pro – I get to work from home one week as I’d probably get fired otherwise. (I get extremely cranky when I don’t get a steady diet of eating whatever the heck I want).

Con – I get cranky. Very cranky.

So what does the second week look like?

Directions
Continue current Levothyroxine dosing. Start low iodine diet 7 to 10 days prior to I-123 whole body scan. Do not resume regular diet until after scan is completed.

Day 1
Thyrogen 0.9 mg IM, injection #1, administered in the clinic.

Day 2
Thyrogen 0.9 mg IM, injection #2, administered in the clinic.

Day 3
Arrive at nuclear medicine department, where I-123 capsule is administered, TSH testing.
I-123 NM whole body scan (radiology), TSH blood draw (lab).

Day 4
Return to Nuclear Medicine at the Hospital for I-123 whole-body scan (24 hours after capsule taken).
I-123 NM whole body scan (radiology).

Day 5
Go to Hospital Outpatient Lab for thyroglobulin.
Thyroglobulin blood draw routine.

Resume regular diet and continue on levothyroxine after the scan.
Post-surgical hypothyroidism: Goal TSH is less than 0.5. TSH at target.

For everyone else going through this, I wish you luck and lots of delicious food afterwards.

Result from lymph node biopsy

Beer and cake
Beer and cake

It’s not cheesecake, but it’s just as good.

On morning Friday, I got a phone call from my doctor. She told me that the biopsy concluded that it wasn’t cancer. Instead, what I had was a reactive lymph node. When I asked her what that meant, she said that my body was fighting off an infection. Sure, I thought, but I’ve heard similar remarks before.

The pain from the biopsy should go away soon, and can take up to a week.

After the call ended, I texted my husband and called my mother with the news. Both were happy. Later that night, we bought a frozen cake and had a beer to celebrate.

But still, I’m leery. I will hope for the best though.

I would like to thank several kind folks who told me about their thyroid cancer experience on Facebook last year or so. Knowing what was going to/could happen made this experience a lot less scary. Thank you.

Anyway, how is your thyroid cancer journey going?

 

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Biopsy to check for thyroid cancer in lymph node

Lymph node biopsy incision sites
Lymph node biopsy incision sites

There are benign-appearing lymph nodes within the right neck. Within the inferior left neck is a 3 x 3 x 2 mm hypoechoic nodule. Previously, it measured 4 x 3 x 3 mm in size. Within the superior left neck adjacent to the submandibular gland is a 2.4 x 0.9 x 1.0 cm lymph node. It does not demonstrate an internal echogenic fatty hilum though is ovoid in appearance. It compares with 2.1 x 0.7 x 1.0 cm in size.

Nervous. That’s how I feel. I was hoping that I would be done with this thyroid cancer stuff. I thought that after the radiation iodine treatment and body scan, no more cancer could possibly be in my body. But after the last ultrasound came a phone call from one of my doctors to tell me that a lymph node has been growing. Because of that, I needed to have a biopsy done.

Arriving in the ultrasound room, I stayed in my clothes and laid on the bed. The ultrasound tech stomped on the foot lever several times to raise the bed so that she could find the spot to biopsy. (Why the hell she couldn’t have raised the table earlier, I have no idea). She pressed that ultrasound wand hard into my throat. (I don’t think this woman had any bedside manner). She found the growing lymph node and called in the doctor and the gal who brought in the glass slides for the cells.

Unlike the last biopsy where six needles gathered the cells, this time the doctor injected some muscle numbing agent. He went in deep and jabbed it around many times. That hurt. He did that with two different needles.

He waited for a minute or two for the numbing stuff to take affect and then dove in with the other needles to collect the cells from the lymph node. Although the numbing stuff was working, he went deep so there still was pain and pressure. I swallowed a couple of times; I guess you’re not supposed to swallow, but that’s hard to avoid when someone’s pressing on your throat like that.

Once he was done and the cells were on the glass slides, he and the slide gal left to make sure that the doctor had collected enough cells. If he didn’t, he’d be back to jab me again.

After five minutes or so, he was back to tell me that they collected enough. Thank goodness. I quickly gathered my jacket and things and took off as fast as I could go. I didn’t even stay long enough to ask when I would have the results. I figured that I’d have them in a week anyway.

I’m hoping for non-cancer, of course. I’ll keep you updated with the results. I’ll celebrate with cheesecake, if it’s not cancer. If it is, I’m having a beer.

Oh, and I think that I’m going to be sore for a couple of days from the harshness of the ultrasound wand and all the needles. On the way home, I stopped at a grocery store and picked up a bag of dark chocolate Reese mini’s. After that adventure, I deserved these yum-yums.

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The bi-yearly ultrasound, thyroid medicine adjustment, and the radiation iodine treatment

Radiation iodine pills stored in metal containers.
Radiation iodine pills stored in metal containers.

Once your thyroid has been removed, you’ll be seeing an endocrinologist for the rest of your life, starting at three times to twice a year. Before you go, you’ll visit a lab* a week or two before and have your blood drawn to make sure that you’re at the correct dose for your thyroid medicine. I believe that for the first two-five years, the dose will be high to help suppress any thyroid cells growing back into your thyroid (or cancerous thyroid).

The high dose can make you anxious, cause you to sleep less (as if you can get a full-night’s sleep when you have work and/or have a family), and make your period a bit abnormal. All of these side effects do wear off after awhile.

I’ve had my own dose change twice now. If you get your dose changes, don’t throw the previous bottle away. The doctor might have you switch back at some point. I’d suggest tucking it into your overnight bag so that if you go on a spontaneous trip, you’ll have your medicine with you. Don’t worry though, if you miss a day, you probably won’t notice it much, since your body has that large dose already.

Also, you’ll be having ultra sounds done at least twice a year too, to make sure that nothing bad is growing. Here is the result of my first ultra sound after surgery to remove not only my thyroid, but also a egg-sized tumor

There is a small nodule in the left thyroid bed, which may be residual thyroid tissue or less likely, thyroid cancer. The radioactive iodine should treat this area in the neck.
We will follow-up with the whole body scan as planned and thyroglobulin levels with this test. Also plan to repeat neck ultrasound in 3-4 months for follow-up.

Scary, eh?

Since I’ve been told that my thyroid seemed normal before (and it wasn’t), this note does not assure me.

So, having good health care is key, because this get expensive. ūüôĀ But even then, there is still a co-pay, out-of-pocket stuff, and etc. Crowd-funding sites, such as¬†gofundme will probably be helpful here.

Anyway, after your first appointment with your doctor after your cancerous thyroid was removed, the doctor will tell you if she/he wants you to do a radiation iodine treatment. This treatment consists of eating non-iodine food for two weeks and then taking a radiation active iodine pill, that will hopefully kill any remaining thyroid cells left. Then, for three days, no one should be around you, including your pets. There are some jerks who don’t care about anyone else and who go shopping after they have taken the pill, possibly infecting others with radiation. (Don’t be an asshole like them). But the good news is that you can eat normally again! Bad news is that you probably won’t taste anything for about a month. Yep, I wasn’t told the last part.

Yes, this is going to suck. I’m not telling you this to scare you, but so that you are prepared and aren’t scared if this happens to you. I highly suggest making the iodine-free food a few days before you go in for your treatment. Because if your partner is a horrible cook, you won’t fully starve. I highly recommend that you download this free low-iodine cookbook at http://thyca.org/pap-fol/lowiodinediet/ and read it a couple of weeks before your big adventure. It’s helpful. And then you can shop for the low iodine food too. I found several things at a couple of large, chain grocery stores. Don’t buy in bulk though as once your three days are up, you’ll probably toss all of it because of your radiation hand prints. Better safe than sorry.

I think that I lost 10-15 lbs during the two-weeks that I was on this special diet. I believe that I mostly survived on sunflower butter and bread that I made a couple of days before. I don’t dare eating my husband’s cooking, and I didn’t think of making the food ahead of time. Learn from my mistake.

Now, let me tell you about the day that I went into the hospital to take the radiation iodine pill. The health care professional wore a lead apron and gloves. She brought a metal locked box into the room. She opened it to reveal two metal pill containers. Both had the unnerving Caution Radioactive Material sticker on them. She carefully opened them and gave me ten pills. I was surprised and told her that I thought that it would be one pill. She replied, yes, that is what they tell everyone, but you get all these. When she gave me a tiny bottle of water, I laughed and told her that I was going to need more. All these pills and only one tiny bottle? That ain’t going to happen.

After I swallowed down the big pills, I was told not to eat for an hour afterwards. It’s best to rest, so that the pills have time to do their job and not be thrown up. I didn’t have any issues with nausea or anything. Yay.

Be sure to have some hard candy on hand, as you’ll need to start sucking on these after you take the radiation iodine pill. One side effect from this treatment is that your saliva glands can clog up. I don’t think that I noticed this until the next day. It was painful to eat fruit, the lemon candy, or pretty much anything. You’ll start feeling it in your lower jaw. It’ll feel like fifty needles jabbing into your jaw there. You’ll just have to power through it. (Hopefully, you don’t experience this, but I did). This pain lasted for a few days to a week or so. I didn’t realize that I lost my sense of taste until a few days after. Drink lots of water too.

I used disposable everything, and after the three days were up, tossed it all in the trash. The bedding I washed and didn’t allow anyone near the bed for a week. I’m sure that my husband enjoyed having our bed to himself during that time.

I would suggest having friends or family watch the kids for a week, so your radiation doesn’t harm the kiddos. If the pets can room the house except for your area, that’s great. Otherwise, pet hotels are great, but can get costly.

Once you get past this, the worse is over. Well, unless you’re like me, and the doctor found a growing lymph node. Yep, I’ll be going back for a biopsy soon.¬† I’ll keep you updated.

But I’d say that most of the time, you’ll be fine. You probably don’t have my luck.

A quick thing about the doctor’s note above. You’ll see that I had to do a whole body scan. I had forgotten about that until I went through all my test results. I don’t remember much about it as there wasn’t much to it. From the doctor’s note, I ingested 2.4 mCi I-123; I don’t remember if that was liquid or a pill, but I’m going to guess liquid. I did that the day before coming in for the body scan the next day. The results were good, “FINDINGS: 24-hour uptake is 1.1% in the region of the neck, equivalent to¬†background levels.” You’ll want something like this too.

So, yay, great news, right? I think that for most people who will be going on their thyroid cancer journey, their adventure, besides the multiple ultrasounds and dose changes, ends right there. But we’ll continue on for a bit with me.

*The best time to go to the lab is right when they open, so that you can be in and out. Great for those who live very busy lives.

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The first month after thyroid cancer surgery

Thyroid medication pills
Thyroid medication pills

During the first month or so after having thyroid cancer surgery, my whole body felt very tired. This tiredness is normal and is because the body is healing from major surgery. I’d go to bed early at times, and once in awhile, I probably took a nap during the day.

I can’t remember if my throat was sore, but I remember that I had to talk a lot a few days after surgery. My mother was having cancer treatments of her own, and there were issues with various things that I had to help her with. It did hurt to talk. Unfortunately, with all the phone calls to her, her doctors, and etc, it took me nearly six months for my voice to return to normal.

Now during this month or so, my voice was scratchy and sometimes it was a whisper. I couldn’t talk any longer than a sentence or two before I totally lost my voice. Talking with also tiring. I’d have to catch my breath.

Speaking of breath, there was one time at night that I woke up feeling like I couldn’t breathe. It was scary. I’d be gasping for air. Of course, this scared the hell out of my husband. This attack happened at least a couple times or so, but during the day too.¬† The best way to handle it is to stay calm and force yourself to breath deep. It’ll be hard during the gasping fits, but you’ll come of it. (I should say that this might not happen to you. This is what happened to me).

The incision scar hurt. It was red and puffy. The stitches were biodegradable, so they didn’t need to be pulled out. I swear that a couple of threads stuck out for some months after that. I was warned that this could happen. I was told to rub, squeeze, and roll the scar after the tape was removed. I think that the tape was removed after a couple of weeks at the doctor’s office.

Oh, and for those who like to use scar healing cream – don’t use scar healing cream on this scar. Supposedly, it will cause more harm than good. I’ve talked with several women who’ve gone through having their thyroid removed, and after a year or so, you can’t even see their scar.

I should mention that if you don’t wear a scarf or turtle necks, those who have undergone any type of thyroid surgery will come up to you to share their experiences. It is nice to know that you aren’t alone. It’s also a great conversation starter at parties.

Stranger: “How did you get that scar?”

Me: “Oh, this? Got it in a bar fight.”

Yes, I actually started replying that way. Hey, you might as well have some fun from it.

Now, if you don’t want the scar to be pink forever, you’ll have to cover it with fabric or sunscreen when you’re outdoors for the first year. Honestly, I haven’t done a great job at this. It’s been over a year and my scar is pink. But it is definitely better than it was the first few months.

During this month too, you’ll get the results from your removed thyroid. Yes, after surgery your removed flesh is taken in for samples to make sure that all the cancer was removed and other joyful things. I found out that besides the egg-sized tumor and cancerous thyroid, that my thyroid was dying. Yep, I had¬†Hashimoto’s Thyroiditis. From my high metabolism, I never would have guessed.

Before the surgery, I weighed 113 lbs. As of today, I’m 130 lbs. When you loose your thyroid, you have to really manage your diet and lifestyle, otherwise you’ll gain weight quick and it’s hard to lose. I’ve given up soda, nearly everything with corn syrup, and candy. I lowered my alcohol intake from a beer or a glass of wine each night to one beer a week. Of course, if I see a doughnut or cupcake I’m going eat it. I admit that my will-power sucks. But I am trying to eat healthier. As for exercise…well, this is something that I still need to work on too. So, don’t feel bad if your diet isn’t the healthiest and that your exercise routine needs adjustment too. Just love the fact that you’re still alive and you get to still enjoy life. Dead people can’t savor delicious foods or go for family strolls.

One more thing that I’m not sure if many women are told about – once the thyroid is removed and you’re taking thyroid medication, your menstruation cycle will be a little off for a couple of months or so. And this happens again when the dose is increased or decreased. There were times where I’d have my period twice in a month. And another where I was spotting nearly every day except for a week break. I suggest buying organic pads/tampons or buying reusable hygiene products.¬† (I found out that the mass produced hygiene products have chemicals that may cause cancer. Having been through cancer, pre-cancer, and abnormal cells, I’m not taking that chance).

Next time – the bi-yearly ultrasound, thyroid medicine adjustment, and the radiation iodine treatment.

The story of my thyroid cancer surgery

Kat in hospital after thyroid cancer surgery.
Kat in hospital after thyroid cancer surgery.

After the results of the biopsy showed that I had thyroid cancer,¬† an appointment was made for me to speak with a surgeon who specialized in thyroid surgeries. You’ll want a surgeon instead of one who does general surgeries as those who do general surgeries may accidentally harm your vocal cords. This is what I was told by the surgeon anyway.

Meeting with the surgeon, she explained the surgery and answered questions. I would have to be on a thyroid medication for the rest of my life. The well-known thyroid medication is Levothroid, but my health insurance doesn’t cover that,

so I’m using a¬† generic version.

Anyway, she explains that I have to be in perfect health for the surgery to take place for two weeks. No colds. Because I have a co-worker who is always sick, I work from home those two weeks.

The day of surgery arrives. I get naked and wear a gown and a special pair of their socks. The area for surgery on my throat is cleaned and marked. I’m hooked up to an IV and get a warm blanket to cover me. Since I get nauseous when waking up after being put to sleep, my care team put something in the IV to prevent that. Again, if you cry because you are scared, that’s totally fine and most people do. They probably have an entire storage room dedicated for tissues.

Soon, I’m out. When I wake up, I’m drowsy. With the pain medication, I don’t really feel pain. After awhile though, I can taste the sodium from the IV solution. The taste stays in my mouth and makes eating gross. Swallowing does feel very weird for that day or so. It feels like I’m swallowing up instead of down. I’d suggest taking your first few sips in small amounts.

Since I don’t like needles or that weird taste, I asked if they could take the IV out. I

had to promise to take all the pills and drink lots of water. They told me that I’d need to pee regularly and handed me a bucket that sits in the toilet to pee in. (A nurse needed to measure the out-take, to make sure that I was hydrated). So, I decided to make it my mission to drink as much as possible and pee often. I annoyed the nurses all that night. My pee turned clear at one point, and they stopped coming in to check on my pee.

My husband slept on the couch in the room. If he wanted food, he had to buy it himself. So, yes, you can have family members there. If I would have been feeling better and didn’t have so many eyes on me, I would have had him join me in the hospital bed. ūüôā

I believe that the nurses checked on my vitals once every hour. This made sleeping difficult.

I can’t remember, but I think that I was in the hospital for either one or two nights. The surgery was on a Thursday. I returned to work on that following Monday. Of course, I worked from home. The surgeon suggests relaxing for two weeks at home, but since I am the breadwinner, I can’t afford to take much time off from work.

A couple of things to note from surgery. I believe that I should have only been in surgery for a couple of hours. Unfortunately, an egg-sized tumor that was growing into my throat was found and removed. (Thus, why I had trouble swallowing certain foods). Twelve lymph nodes were removed to check for cancer, which is fine, as we have so many more. I can’t remember the exact number. I believe my surgery lasted 2.5-3 hours.

My hubby took a photo of me just waking up from surgery. Probably to show me how silly I looked. I’m sure that I said something odd in my drugged state. Not my best look, so he’ll probably be surprised that I included it in this blog entry.

Next post – the first month or so living with thyroid cancer removal.

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Hi, I have thyroid cancer.

Kat showing off thyroid cancer surgical tape
Kat showing off thyroid cancer surgical tape

Single left inferior thyroid lobe nodule measuring 2.8 x 1.6 x
2.2 cm. This demonstrates indeterminant features. Given size, recommend fine-needle aspiration to exclude underlying malignancy.

Hi, I have thyroid cancer. Right now, that’s how it feels to identify myself at this time. I could say, Hi, my name is Katherine. But for right now, it seems that my thyroid cancer is a bigger part of my life than I would like it to be.

I’m going to start from the middle and then go to the beginning. This may seem kind of an odd way to start, but let me explain why. My thyroid cancer adventure actually started late 2015, and I thought that after my thyroid removal, I was done, except for my twice a year check-up. But last week or so, during my ultrasound check-up, they found that one of my lymph nodes has been growing. I have a biopsy scheduled near the end of this month. I’m preparing myself mentally that it is probably cancer again and that I will have to have it removed. The good news is that my original scar is still showing, so the surgeon won’t need to spend any time wondering the best way to cut me open.

I should warn you that my humor is a little dark.

But now let’s start at the beginning, as you might have been just diagnosed with thyroid cancer yourself and may be a bit scared. I’m here to share my own experience with thyroid cancer, in case this helps someone feel like they aren’t alone. (Or realize that they might have it better than me. There’s always hope, right?)

As you’ll soon find out, thyroid cancer is very common in women. Especially those who’ve had children. Yes, childbirth can do a bit more damage than stretch marks. Luckily, because this form of cancer is common, the removal is quicker than most and has an extremely high life expediency, even if your thyroid cancer should be marked as stage four. So, yay?

Still, if anyone tells you that you’re lucky to have such an easy cancer, feel free to punch them in the throat. Okay, don’t really do it. Just imagine it. Any form of cancer sucks, and who wants to lose a piece of their body? (For those body mutilator folks out there, don’t answer that question).

So, you might be wondering, Katherine, you’re blathering on. I don’t care about that. What I want to know is, how did you know that you had thyroid cancer?

Great question! My answer is very important. I think that I’ve had it for at least 5-10 years before I actually knew that I had it. For the past several years, when I’d go for my annual physicals or when I was not feeling well, the doctor would feel my neck and then asked if I had a cold. I’d say yes, or no, but I have allergies, and then the doctor might say, “your lymph node(s) are swollen probably due to that.” They continued on with whatever they were looking for, but they didn’t bother putting that in my chart. I think that if there was repeated “swollen lymph nodes” written in my chart, you would think that a doctor would think that something was wrong?

It took a student dentist at an university to tell me, “I hate to tell you this, but I think that you have cancer. You should see a doctor.”

I laughed, but made an appointment to see a doctor about the possible cancer. When he saw me, he told me that I probably have a cold or an allergic reaction and that I was fine. I didn’t press the issue, but the thought stuck with me.

Then, in 2015, I was in a bad car accident, where I had to have a MRI done. There, in the x-ray, was proof that I had thyroid cancer. Often times, this is how thyroid cancer is found. For many people, there aren’t any noticeable symptoms.

Did I have any symptoms that I could share with you? For me, I had difficulty swallowing waffles. Maybe a little difficulty breathing – just a bit. I was to find out why later.

After the MRI, I was told to talk with my family doctor who could then give me a referral for an ultrasound on my thyroid. After this, the next step was a biopsy of six needle jabs. Don’t feel bad if you can only allow them two or so. These are painful, in my opinion, and some people refuse to do it once they hear the procedure. Don’t be foolish like them. The biopsy needs to be done. If you cry, don’t worry. Most people do. They have tissues there for a reason.

My biopsy report results – “POSITIVE FOR MALIGNANCY¬†Papillary carcinoma.” The Papillary carcinoma part is sometimes known as “papillary thyroid carcinoma” and just means common thyroid cancer.

If you’re reading this from googling your test results, your biopsy confirmed thyroid cancer. Fuck.

I’ll continue on in the next post. (It’s too close to my bedtime).

 

 

 

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