And still waiting...

I think, at some point in the (near) future, I will be giving up on waiting for a definitive answer on where (if) the NETs are in my body. So many tests, so few answers.

Yes, I am happy for the initial, and relatively fast, discovery of the carcinoids in my stomach. I was told, and my research backed this up, that the most effective - and really, the only viable treatment for this type of tumor, is surgery. No chemo or radiation or weird drugs with odd side effects. The surgery would be it. End of story. Except, in my case, as we find out in a post surgical report that completely surprises the doctor, it's not?

So, onwards. Test, after test, after test. Lab loses some bloodwork, takes multiple calls before doc answers question, more appointments, and tests, and...NOTHING. So, good news, bad news, no news, come back in a few months.

Meanwhile, almost one year post surgery and I can almost eat an entire meal at a restaurant - as long as it's a meal from the children's menu. Too much sugar or fat, or the wrong type of food and I'm in the bathroom or feeling extremely nauseous.

And, it just feels like the doctors aren't that interested any more. Too rare to be on the list of concern, not enough useful test results to keep their interest up.

So, pretty soon, I think, I'm going to be done.

Except that I won't. It's easy to say that, but the possibility that cancer is creeping slowly through my body unseen but undetectable just keeps gnawing at me. And no one really understands that, and it's difficult to say to people, since it's hard to say out loud.

Worldwide NET Cancer Awareness Day

November 10 is Worldwide NET Cancer Awareness Day. I have to doubt that many (any?) people I know will be aware of NET cancer awareness day, considering most people don't even know NET cancer exists. I haven't told people many details of the reason for my surgery. At most, I gave a vague 'tumours that had to be removed before they became a problem' description, and the follow up 'they are pretty sure it has spread but don't know where' without any detail of what 'it' is. I don't like to talk about myself much. I just don't feel overly comfortable giving details about anything personal. I'd rather suffer alone and not deal with the awkwardness of people in a world where cancer is still one of those subjects that doesn't sit well. Plus I hate when people interrupt something difficult you're trying to tell them with their own stories of trauma. It bothers me intensely. I understand the psychology behind this behaviour, but it annoys me greatly. And it happens frequently. I've watched it in other people's conversations. Personal ranting aside, today, on NET Cancer Awarenss day, I hope that everyone affected by it is heartened, even slightly, by the idea that research is moving forward - a promising new virus to fight it is close to being researched (funding pending), and there are many more of us out there who are aware of this rare and frightening, but thankfully slow-growing, form of cancer.

no break in the clouds

and now for the next issue on the agenda...the plain old boring anemia. 

 Back to the haematologist next month. I'm sure he'll want to hook me back up to the every so yucky iron infusion. Once a week, about one and a half hours of icky IV iron administered in the cancer centre. Me and my terribly tiny and ever so painful veins, surrounded by people having chemo. This is followed by about a day of extreme fatigue. Oh happy joy, can't wait. 

This interesting little journey has provided one new tool I have come to like and rely on. The online 'patient gateway' where I can go and check my latest blood test results, see my next appointment (providing the doctor is in the system) and check reports from previous appointments. Not perfect, but there's enough useful info that I no longer have to wait for a copy of my results, or hope the doctor will send me a note in the mail with info about a recent test.

Just wish my primary care doc was part of this system. But they've just rolled out their own system, which, of course, is not part of the other one. So, my primary care doc still has to rely on info I've specifically asked the specialists to send him, or info I provide. 

Sigh. One day all health care systems will be useful and helpful. Until then....we'll muddle along as usual.

No news is....

....not bad news? Not good news either. The MRI and other test results came back. Shadows, but mostly nothing really. Standard follow up is to repeat the scans in six months, but they want me to come back in three months, not because they expect to find anything, but because the lymph node results after the surgery were so unexpected and they are unsure what it means. (To me, this says it has spread and is just hiding and until there are symptoms, there won't be any useful test results). Sigh. I like answers, and am very unsettled when I don't have any. I know this is mostly good news, but there's a question hanging out there and I won't be ok until that is answered.

The MRI that wasn't

I showed up on time for my recent MRI, very hydrated (for the IV). Filled out the paperwork - asking about various procedures and medications to ensure there were no problems.

Wait patiently while the person with the appointment before mine (who was late), is taken in and scanned.

Now it's my turn. Get changed into hospital gown, visit the bathroom. Wait in 'the chair' for the IV line to be put in. Not my favourite thing in the world. Ever.

Nurse comes in. "I just need to check a few things. You had an endoscopy last week - right?"
"Yes"
"Ok, I'll be right back"

Nurse comes back in. "Uh, they did a biopsy during your endoscopy?"
"Yes"
"I need to check something"

MRI Tech comes in. "We can't do this MRI today"
Me "Why not?"
 Tech "When they do a biopsy, they use tiny little metal clamps on the area they biopsy"
Me "Oh. And that would be bad in an MRI"
Tech "Yes! We have to wait 30 days from the date of the biopsy to schedule an MRI"
Me "Why didn't they tell me this?"
Tech "They don't think of it"
Me "Why didn't they schedule the MRI before the endoscopy"
Tech "They don't think like that"
Me "But, this is one of their major tests, don't you think they'd have figured it out by now"
Tech "You'd think, but no. I recently had a doctor call me up and scream at me for not doing the ordered MRI on his patient. I reponded that an MRI would have KILLED his patient. His patient had a pacemaker"
Me "Are you serious??"
Tech"Yup"

We went out to the desk to reschedule for next month. (After I changed back into my clothes, thankful no IV had been started before this interesting conversation)

When I left the hospital, it was rush hour traffic.I'll take painful rush hour traffic over having a hole (or two) burned through my esophagus by an MRI!!

And so, the fun continues...next month

I am a pink zebra

Answers are sometimes difficult things to find

In February 2012, I had a endoscope. I'm anemic and they're looking for a cause. They've been looking for a cause for many years... Apparently, they don't buy my explanation that it's genetic. So I submit to all the tests my haematologist wants to do, which this time, involved my gastroenterologist and an endoscope down my throat.  

I had an endoscope about a year ago, and she found a few small polyps. She biopsied them, sent them off to the pathologist and the results were negative...they were just polyps.

This year, however, the biopsy of my polyps was not negative. It was positive. I had gastric carcinoids. Fortunately for me, right down the street from my gastroenterologist's office is the South Shore Dana Farber Center, and in it, (on Wednesdays only), is my gastroenterological surgeon.

When I met with him the week after the biopsy results came back, he told me I needed surgery. I had anticipated this, expecting him to tell me it would be a nice little laproscopic event, and then I'd get to lay around on the couch for a few days. I was wrong. I needed major stomach surgery. He was going to remove part of my stomach, and along with it, the cause of the carcinoids, so they would be unlikely to return in the future.

Uh.         Ok.

So, a month later, I had surgery at Brigham and Women's hospital in Boston. Surgery was four and a half hours long (so I'm told). I was in the hospital for 6 days. They wouldn't let me leave hospital until I ate a pudding. A tiny, chocolate pudding. It took me two hours to eat that tiny thing. 

When I got home, I sat on my couch and recovered for almost 3 months. It took me two weeks to be able to walk to my mailbox at the end of the driveway. Next, I could walk to the end of my street in 20 minutes (3 houses away). Finally, I was able to make it around the block. Now, four months later, I walk daily, for about an hour. It's the one thing that kept the fatigue at bay.

Eating was fun. My stomach (which was smaller than expected because more was removed than originally planned), could only hold a few tablespoons of food at a time. I have to eat more often. Sometimes it felt like all I did was eat and walk. Actually, that is mostly what I did. Eat, read, walk, sit. Eat, read, walk, sit. Repeat. Going out to eat is still sad. I order what I want and then, a few bites in, I'm full. Forget about dessert. I can't even get through an appetizer. It is getting better though. I can eat a heck of a lot more now, four months post surgery, but it's still not a whole lot of food. And I love food and going out to eat. I also gave up ordering drinks while I am in a restaurant. Fills up my stomach too fast...

((Personal rant: I will never, to my dying day, understand why anyone would willingly sign up for gastric bypass surgery to lose weight. Willingly undergoing this type of surgery is, in my mind, insanity multiplied. I understand, if you're obese, you need something drastic. But this is far too drastic. Plus, if you're obese, chances are, you're not used to exercising, eating right and doing what is necessary to recover from surgery anyway. Hence the failure of many gastric bypass surgeries - so many people regain all the weight they lost after surgery))