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Oct. 14th, 2020

banner courtesy of the wonderfully kind and generous [info]tularia

For personal reasons, I've decided to make my journal Friends Only. I have a pretty loose friending policy - if you friend me, I'll most likely friend you back, as long as you're not a troll or prone to making a billion posts a day solely using 'netspeak' *g* That said, while I'm pretty good at catching when someone friends me, and the Message Center helps with that immensely, please comment below and let me know if you're friending me, so I can friend you back more quickly. Finally, posts in my journal range from the personal to the inane to the bizarre, with the occasional fic scattered between. If the thought of any of that bothers you, or you're homophobic or intolerant in any way? Please refrain from friending me, as I will not be friending you back.

Lastly, since I know some people don't restrict themselves to just LJ, I'm also on Dreamwidth and Insanejournal - but I crosspost to all three, so the only place that *might* have something the other 2 don't is LJ, solely due to it's ability to post by phone and if I'm hospitalized or away from a computer for an extended time, that's the only means of posting I'll have. Otherwise, all three journals are pretty much identical. Other than that, welcome, friend any or all that you like, and feel free to lurk or comment at will! ;)

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Aug. 2nd, 2017

Oh boy, I was not expecting *that*!

 The other day, I was making steaks for dinner. So of course, like I always do, I go out in the yard to preheat the grill. 


What do I see when I open the lid of the grill? 


A freaking field mouse, sitting right on top of the rack, staring up at me and frozen in fright. 


We stared at each other for several seconds and I'm not sure who was more surprised - me or the mouse.


Apparently the string of expletives that then came out of my mouth as I jumped back was enough to break the mouse free from its frozen state. But does it jump off the grill and run away? Noooo, of course not... 


Instead, it climbs down between the bars of the rack where the gas jets will go roaring into flames if I start the damn thing, and then sits there shaking in fear and staring up at me. Like it has a death wish and expects me, the bone-deep animal lover, to execute it any second now.


Finally, after much jumping around (on my part, not the mouse's) and waving of my hands at the grill - like I'm somehow going to magically make the mouse go 'Poof!' and disappear - I finally convince the field mouse that it's really, really in his best interests to get the hell out of the grill and run off back into the gardens. 


Needless to say, I'm now just the teensiest bit nervous any time I have to use the grill. Hopefully Mr. Mouse has decided the grill is just not the best place to hang out in. Hopefully... 😆

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Sep. 27th, 2016

Written report for MRI

Okay, just got the written report for the MRI. I have not 1, but 2 labral tears in the same damn hip. Explains why the pain has been so bad all around the hip joint. I don't know if that will make the surgeon recommend hip replacement instead of repair, especially since repairs don't have good success rates in people with arthritis and autoimmune disease, but I'm definitely worried. November 10 cannot come soon enough... As always, if anyone had insight or advice, I'd be very grateful. Thanks.

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Sep. 24th, 2016

Advice needed

 I've been having increasing pain in my right hip, so my oncologist ordered an MRI. Heard back from them with great news and not so great news. No signs of metastasis, thank god. But not an all clear either, unfortunately. Apparently I have acetabular labral tears and will need to see an orthopedic specialist once I get the actual written report early next week. A year ago, my sister ended up having to have a hip replacement because of hip dysplasia. I'm really hoping I won't need that, but from what I've read, I've already been trying most of the non-surgical treatments for months and they've done nothing for the pain, which just keeps getting worse, waking me up most nights in agony.  
So my question to you all is do you know of anyone who had surgery for labral tears, either repair of the tears or a hip replacement, and if so, what did it entail (type of surgery, outpatient or hospital stay, amount of post operative pain, recovery time, etc)? From what I've read, for someone over 40, who already has osteoarthritis in the joint or who has rheumatoid arthritis (I have both), the repair doesn't work too well and usually just leads to a hip replacement anyway.
Spoke with sister last night and she raved about the doctor who handled her hip replacement - he used to be an aeronautical engineer before he became an orthopedic surgeon and now he's at the top of the field and has people flying in from all over the world to have him treat them. Luck was with me, thank goodness, because not only is he in my insurance plan but he also has another office just 45 minutes away, so I won't have to drive nearly to NYC to see him. So, so glad to be going to someone who comes highly recommended, is highly experienced, has an excellent reputation and is very compassionate to his patients, instead of just having to pick someone from a list. The only other local doc in my plan with this specialty had absolutely horrible patient reviews online - rude, arrogant, rushes patients in and out, and doesn't like any questions, etc. No way I'd see that guy even if he was the only one in my plan! 😖
Appointment is now scheduled with the specialist for Nov 10 at 9 am, so we'll see what he recommends. 
I'd be very grateful for anything you care to share, thank you all so much.
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May. 4th, 2015

My mother passed away suddenly last night. My family is shattered and in shock. My father lost his best friend of nearly  60 years. I don't know how any of us are going to get through this, I really don't.

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Apr. 12th, 2015

Okay, so over the past month or so, at first a few times a week but now pretty nearly every single night, I've been woken up in the middle of the night by absolutely horrible,  excruciating, *paralyzing* pain in every major joint in my body. Ankles, knees, hips, back, shoulders - just *everywhere*. I mean, after all the surgeries and the spinal disease and all, I have a pretty damn high pain tolerance and this pain is *bad*, bad enough that I'm waking up literally freaking crying and afraid to move, it hurts that badly. 
I saw my oncologist last week and discussed it with him. Given the levels of pain, the inflammation in so many major joints and on both sides of my body, he's very concerned that I may have rheumatoid arthritis. 
Which both really depresses and frightens the hell out of me. I do not need another health issue - especially a major one that I know virtually nothing about. I don't think I have the strength to even contemplate, let alone actually face, this horrible kind of pain every day for the rest of my life. My back is already bad enough. Feeling this new type of pain in every major joint, all over my body? Might just be the thing that finally breaks me after managing to get through all the other health crap. 
Don't anybody panic - I'm not suicidal or anything. Just tired and worn down after weeks straight of sleep being disrupted by pain, and depressed contemplating having to face a future full of yet more of the same. So I'm venting, that's all. I'll deal as always. 
Anyway, so now I'm scheduled to see my primary doc this Wednesday, so he can refer me to a rheumatologist and I'm guessing rounds of some kind of tests. Yay, joy, fun for me. 
Right, now I'm going to go, eat some chocolates, hug my cats, and wait for the new Game of Thrones to come on. Peace, all.
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Jan. 15th, 2015

PET Scan Results

So I saw my oncologist Monday for the PET scan results. They were mixed.

Good news is my brain, lungs, and liver are clear. Which considering those are all areas that breast cancer commonly spreads to, is actually great news.

Mixed news is that while my spleen is not brightly glowing, it's still glowing and it shouldn't be. But since the masses don't appear to have grown significantly since the last round of CT scans and aren't a definitive malignancy according to the PET scan, and the only option for a biopsy is to take out the whole spleen, my oncologist wants to wait a month and observe them and then rerun the tests. Something I agree with fully, since my immune system is already screwed from the chemo and losing my spleen would make it worse. 

Bad news is that the PET scan shows 2 areas lighting up on my spine. That, coupled with the fact that while my blood calcium went down, it's still dancing around on the edge of abnormally high, has my oncologist concerned. The spinal masses are tiny though, so he's going to wait to see what they look like on the next round of tests before deciding on what to do. At that time, he said he'll have my blood calcium checked again and, if it's still high, I'll need to have a bone marrow biopsy done because that will mean the masses are suspicious for metastatic breast cancer in the bone, leukemia or multiple myeloma. 

I'm kind of up and down over the results. One minute, I'm ecstatic that my brain, lungs, and liver are clear and I don't have to lose my spleen just yet. But then the spots showing up on my spine and still not knowing what is going on in my spleen, have me freaking out. While I really appreciate the thorough but conservative approach that will save me from unnecessary surgeries, I really wish I had a definitive answer already. Wouldn't it be nice if I could just go down to the local drugstore, buy one of those over-the-counter home tests like pregnancy tests, take it home and just prick my finger or something and know in 5 minutes whether I have a new cancer or not? Yeah, fantasy land, I know it doesn't work like that. Just hate this feeling of being in limbo waiting for answers. 

Speaking of waiting for answers, still waiting for the pathology results on the needle biopsies of the thyroid masses. But I had the biopsies done just last Friday and the radiologist said the results would take 'about a week', so I don't really expect to hear back on that until maybe Monday. Hey, at least that one I should get a definitive answer on, right? Unless of course, I'm one of those unlucky bastards who suffers through getting stabbed multiple times with a hollow needle, only for the pathology lab to say they didn't get enough of a sample of tumor cells to get an accurate result and the biopsies need to be redone. I know that the odds of that are low but I swear, if that happens to me, I'm going to cry. Or hit someone. Or possibly cry while hitting someone. 

So that's where things stand for now, back in limbo land of waiting to run more tests. I'm sorry too if I worried anyone by not posting right away - I'm coming down with a cold and between being worn-out and frustrated, I just wasn't up to it. And again, thank you all for the comments, emails and texts, I really appreciate the support and it means a lot to me. Thank you. 

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Jan. 12th, 2015

In a little over a half hour, I leave for the appointment with my oncologist, where I'll be getting the results of the PET scan. I'm worried about what the scan will show but I'm so worn out from waiting and worrying that at this point, I'm willing to deal with any results just as long as I *know*. Whatever the results end up being, I'll deal with it just like I always have. It's the limbo of not knowing that's driving me up the wall. Wish me luck, hopefully the news won't be as bad as I fear. 

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Jan. 5th, 2015

PET scan is done. The report should be sent to my oncologist within the week. However, the radiology tech burned it to a disc for me, along with the auto-run software to view the scans, so I'd have a digital copy for my records. 

So when I got home, I loaded it on my laptop. I'm not a radiologist but I do have a science degree and know the basic principles of a PET scan result - dark is good, bright is bad.

Several areas lit up as bright as the scale goes. I'm not sure about exactly where, anatomically speaking, but one bright area does look like my spleen. I'll wait for the official word from my oncologist before I say anything to my family. 

But for now, I'm going to go soak in the tub and try really hard not to think at all. 

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Jan. 2nd, 2015

So I saw the ENT surgeon today. Nice enough and definitely knowledgeable. On the off chance that the tumors might be benign, he doesn't want to remove my thyroid without first trying to get good needle biopsy samples. So I'm scheduled for ultrasound-guided fine needle biopsies at a radiology center early next Friday morning. It'll take about a week to get the pathology results back, at which point he'll call me and I'll find out if I need to have the thyroid surgery or not. 

Next is the PET scan Monday afternoon. Frightened of what it's going to show, in my spleen and elsewhere, and trying not to think about it too much. This weekend, I plan to read, watch mindless and/or fun TV, maybe even rent a DVD or two. If anyone has any suggestions, they'd be much appreciated, thanks. 

Once I get over the jetlag, I might share some pics of my trip. Until then, peace. 

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Jan. 1st, 2015

Tomorrow morning, I have an appointment with the ENT surgeon. He'll examine me, review the ultrasound results for the thyroid, and then make his recommendation as to whether to just take part of the thyroid for biopsy or whether he needs to remove the whole thing. From what my internist has said, due to the number of tumors, location, and the high risk that they're malignant, it's very probable that he'll recommend taking out the whole thyroid. And I'll find out what the surgery will entail, as well as when it will be scheduled. 

Then on Monday afternoon, I head to my oncologist's Setauket office for the PET scan to get a better idea if the tumors in my spleen are malignant. If they "light up" on the scan, as my oncologist put it, the probability that they're malignant is even higher and then I'll definitely need to have my spleen removed for biopsy. 

Needless to say, both appointments have me nervous and worried. I'll do whatever I need to, just as I always have, but I was kind of hoping I was done with surgeries. I'm not so much worried about the thyroid surgery, since that's fairly common and straightforward from what I understand, but the spleen one would be pretty serious. So I'm worried. And that's not even considering that either or both surgeries could confirm the suspicion of cancer and land me in chemo and radiation afterwards. 

I will do whatever I need to, as aggressively as I need to, to give myself the best chance. I just don't want to have to. 

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Dec. 31st, 2014

 Back from trip to San Francisco to spend Christmas with brother and his family, including adorable 1 year old nephew. Punchy from no sleep on red eye flight from hell, but had a great time so more later. If I don't revive in time to post again later today, wishing you all a very happy and healthy New Year! 

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Dec. 18th, 2014

Help/advice needed

 So since I'm looking at probably having to have both my thyroid and my spleen completely removed, I need information. I know I asked before for information about diseases of the thyroid/spleen - and thank you so much to everyone who was kind enough to reply, I really appreciate it - but now I need info specifically about having the thyroid/spleen totally removed. Basically, what was the surgery like? Was there any specific preparation for the surgery, or was it just the usual pre-op clearance tests? What was recovery immediately after surgery like? Long term recovery? Any complications? Any or all of that kind of information would be really helpful in getting my head around things. Whether a website that has that sort of info, personal experiences of you or a friend or family member, all of it would be very welcome. Thanks, for all the responses and for the kind words and support. They really mean a lot to me. Thank you.

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Dec. 16th, 2014

Bad news

 I saw my primary doctor this morning, to find out the results of the second ultrasound. The news wasn't good. Several of the masses show both microcalcifications and hypervascularity, which are big red flags. My primary is no longer talking about just doing a needle biopsy - he said that these latest results put me at high risk for thyroid cancer, so he now wants me to see an ENT surgeon, who he says will most likely recommend taking out my entire thyroid. If pathology confirms malignancy, I'll then need chemo and/or radiation. 

This coming on top of yesterday's meeting with my oncologist, where the ultrasound of my spleen looked suspicious as well and has prompted scheduling of a PET scan and may lead to having to get my spleen removed and more chemo. My primary is worried that with both the thyroid and spleen masses looking suspicious, that it might mean the breast cancer has spread and in more than one direction. If biopsies show it's the breast cancer metastasizing and not new, 'primary' cancers of the thyroid and spleen, it'll mean more aggressive treatment with chemo, because the odds really won't be in my favor. This has all left me feeling like I've been kicked in the head and chest, like the world is spinning and air is hard to breathe. Please say a prayer to whatever deities you believe in, I could use all the positive vibes I can get. Thanks. 

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Dec. 15th, 2014

Ultrasound of Spleen Results

 Saw my oncologist today for the results of the ultrasound of my spleen. The masses are solid, not cystic. And the radiologist says that they cannot rule out malignancy. So now I have to have a PET scan 1/5 and if the masses light up on the PET, I'll have to have my whole spleen taken out for pathology. Apparently the spleen has so many blood vessels that if they cut it, it likely won't stop bleeding, so they can't just do an excisional biopsy. So if the PET scan is positive, my spleen comes out and then chemo and possibly radiation. 

I really expected to hear it was just cysts, so I'm pretty numb right now and not really processing yet. Now I'm doubly grateful I'll be spending Christmas with family in San Francisco. I need the distraction. 

As always, prayers and positive vibes would be very much appreciated. Thanks. 

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Dec. 14th, 2014

Help/advice needed

Tomorrow I'm scheduled to meet with my oncologist to find out the results of the ultrasound of my spleen. Also, the results of the second ultrasound of my thyroid that my internist put a rush on may come in, at which point I'll find out if there's also cysts in my thyroid in addition to the solid masses, and we'll talk about possibly going ahead with a biopsy.

I'm pretty freaked out by the possibility of malignancies in both my thyroid and my spleen. Hell, I'm pretty freaked out even by the thought of benign masses. I know pretty much nothing about diseases of the thyroid or spleen, whether benign or malignant, so I'm flying completely blind. Sure, I could exercise my Google-fu but I think we all know how much potential that has for convincing a person that the world is ending and/or they have Rocky Mountain Spotted Fever/the Bubonic Plague/Ebola/terrible, random rare disease. Does anyone either know someone who has disease(s) of the thyroid or spleen, whether benign or malignant, or know of good, informative websites? 

I want to go ahead with the biopsy of the thyroid masses and, if the masses of the spleen turn out to be solid as well, I'm very likely going to want to move ahead with a biopsy there too. I just want to make sure I ask the right questions of my doctors and given how little I know, I feel severely handicapped. Of all the things I learned in dealing with breast cancer and spinal disease, no matter how good your doctors are, you still need to be your own best advocate. And right now, I don't feel like I could advocate my way out of a paper bag. So any and all information, advice, etc, would be very much appreciated. Thanks.

In other, far better news, on Wednesday I drive my folks to JFK to fly out to my baby brother, sister-in-law, and little nephew's home just outside San Francisco. I will be following on another flight out of JFK on the 23rd, and will hook up with my older sister at the San Francisco airport for the drive out there, so we can all spend Christmas together and celebrate my little nephew's 1st birthday the day after. I'm a little nervous about leaving my cats for a week, but the cat sitter is actually a vet tech that works at my vet's office, so they couldn't be in better hands. I'm really looking forward to the trip, and not just because my super energetic little nephew is guaranteed to distract me and put a smile on my face - I'm really looking forward to seeing everyone and getting to spend the holiday with loved ones, not to mention the treat of getting to experience Christmas again through a child's eyes. No matter what negative things may be going on elsewhere in our lives, the gift of spending time with loved ones is something to be treasured.

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Dec. 10th, 2014

So apparently I have multiple solid growths on my thyroid, the largest just under 1.0 cm. I may also have a cyst - the language of the report was conflicting on that, so my doctor had the ultrasound tech in his Riverhead office redo the sonogram to see what that radiologist says. He put a rush on the report, so he expects to have the results Friday and wants me to call him that afternoon. He said that normally, the rule of thumb with growths under 1.0 cm is to wait 6 months and rerun the ultrasound. However, given my breast cancer, he doesn't want to wait that long and said we'll discuss doing a biopsy once he gets the second ultrasound report. 
I'm kind of numb and not processing right now. Any prayers or positive vibes would be very much appreciated, thanks. 
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Received a call from my GP's office - they got the report from the ultrasound of my thyroid and it shows 'multiple abnormal growths'. So he wanted to see me right away to 'discuss the results in detail' and I didn't want to wait until my appointment next Tuesday. Fortunately they got me in today at his other office in Riverhead. I'm about to go in now, wish me luck...

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Nov. 29th, 2014

Feline shenanigans

I went to Petco yesterday - more because I needed cat food than because of Black Friday - and ended picking up a $7 cat bed. I really didn't think either cat would actually use it, since they've never been the type to sleep anywhere other than on my bed, but it was marked way down and really plush. Apparently it's very appealing to senior cats and gets the cat stamp of approval, because they've both been literally battling over who gets to sleep in it - the second one of them vacates it for food or the litter box, the other practically dives into the newly empty bed. Leaving the loser to stare dagger eyes at the victor and wait for their next opening.
At this rate, I'm going to have to head back to Petco to buy another one - this time at full price, joy - just to keep the peace. They do look so happy and warm, all snuggled down...

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Nov. 25th, 2014

Update and advice needed

Just saw my primary doctor to keep him in the loop on all the test results and what the oncologist is doing next. Turns out the nurse in his practice does ultrasounds, so he's having me come in next Tuesday so she can do the ultrasound of my thyroid. 
On the one hand, yay I don't have to wait until January to find anything out about the thyroid mass. On the other hand, I'm wondering if I should be seeing the endocrinologist since he's a specialist. 
So here's my question I need advice on: should I rely just on the ultrasound scheduled with my primary doctor's office and cancel the endocrinologist appointment, or should I keep the appointment with the endocrinologist to get another opinion? I'm just worried that if the mass does need further follow up with a specialist and I've canceled the appointment, I'll have to wait even longer to get in to see him. I have to admit, I'm a little wary of a general internist being knowledgeable enough about thyroid masses. Advice? Suggestions? All would be very much appreciated, thanks. 
Now, home for a half hour before I have to leave for the hospital and the ultrasound of my spleen. Joy...
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