So 2014 has sucked even more......
Ya know, I thought 2013 was going to be the suck(iest) year for a long time, but nope, January 1, 2014, it started off with (what I consider) even worse news.
My Bec.....if you haven't met Bec (and though most of you that read this, know about her, just may have not met her), Bec is very special. She's never had a bad day in her life (well, maybe 1 or 2). She greets every day as a new adventure. Worries more about whether she'll have time to make her lunch than do these clothes look cool......A kiddo who has had more than her share of undeserved challenges over the years.
Bec is the last of the 3 biological kids. Her life also started off with a bang, as in a seizure when she was 6 weeks old, then it was failure to thrive, then it was there's something really wrong here.....a month here and there in the hospital, no diagnosis until she was 3-4 when she saw a geneticist who had seen another kid like her and it was given a name, Dubowitz Syndrome.
The years have past, the challenges have been more academic than anything. Still looking as we speak for the 'gene'. Been to the National Institutes of Health and were 'fully' sequenced, Boston Childrens' also did it almost 2 years ago, nothing.
Treated her for the most part the same as the other kids, demanded she be educated along with the 'regular' kids, also demanded that they educate her, period. Last year she got a 'real' diploma, partially because of a loophole (she cannot pass the standardized test, but she was in the 'gap' class where they didn't have to and therefore gets a REAL diploma, not just a certificate of attendance).
She's had some medical issues over the years, but nothing as major as that first year or so, or so it would seem.
She's always had food allergy/intolerance issues, totally no dairy, no soy, but not to the extent that every ingredient is scrutinized. Every once in awhile, she'd have an issue and first question was 'what did you eat?'.
So fast forward to the holidays and she's throwing up, and I mean several times per hour....No one else in the house is sick or has been sick.....after a couple of days, she felt better and went back to work....couple of days later, sick again, took her to the pedi (actually we were exiting from them to an 'adult' practice because the PA we see there is retiring in June, thought it would be a good time to go), he said it was a virus and she had reinfected herself.....not that I was buying this with no one else being sick, but whatever.....he gave her some anti nausea meds, a couple days of this and she's okay again for a few days, and then it's back and of course it's a weekend.....she goes back to him on Sunday January 31st, once again, he says it's viral.
I 'talk' to her docs at Boston Childrens' and they ask about bloodwork, etc. I call the pedi office on February 1, on the 2nd, we go for bloodwork and stool cultures. Bloodwork done, we come home to catch the other stuff....I can't even begin to tell you how horrified I was when all this blood was coming out of her and not poop. I call the pedi's office to tell them, bring that sample back to the lab where the blood was drawn, tell them. I keep checking the online portal the practice has for lab tests (they were testing for e coli, salmonella, etc). and nothing, so I go to bed.
Around 9:30 (yes I go to bed with the chickens, breast cancer drugs do that to you), the phone rings and it's the pedi on call doc. He wants her to go to Hasbro (Childrens' here) and get admitted for very low potassium counts, I ask him about the blood, he says he didn't know anything about that. After I get her packed up, the phone rings again, this time it's her pedi telling us she has to go to Hasbro and be admitted for low potassium. I tell him we know that.
Head to Hasbro, get there around 10, go right into the ER into a room......they get her on an IV, now mind you she's still puking every hour or so and has had nothing to eat in days.....they do x rays to look for a blockage, they run bloodwork, then she starts with the bloody diarrhea.....they want her in the PICU but there is no room.....we finally get admitted to the PICU at 4 pm, so she's still puking and diarrhea, there's no shower in the PICU, there's no bathroom, just a commode and she is the sickest kid you've ever seen, and upset because people are seeing her sick and with no clothes on. She finally settles down with lots of meds to rest. At 2 am, they come in make us move (babies take precedence in the ICU). They move us to the 5th floor, generally no sick kids up there and it's the chemo floor so the nurse ratio is lower than the other floors (1-2 in the PICU, 1-3 on the 5th floor, but they have trainees, who cannot work with the chemo kids, so they assign 1-2 of them to her).
She ends up with a transfusion, more tests than you can imagine, they want to scope her but can't until her potassium comes up, and with that, all her other counts are way off, so now her feet are all swollen, she's still go so much bleeding the transfusion pretty much came right back out of her. She's now got a Foley and a pick line, one night I counted 15 bags on the IV pole with 4 pumps running.
At this point, it's snowing like crazy out. She's still puking and pooping blood every 2-3 hours, and now she's upset because all these people are looking at her, she's very shy and she can't keep underwear on, she has to change her johnny constantly, etc. I tell them why not get her up every 2 hours so she can make it to the bathroom (now that we are on the floor, we have a bathroom). So we do that. On Saturday, her potassium levels have come up, but they don't run scopes on Saturdays (this was around 7 pm) so I became Becca's crazy mom. I've had no sleep for 4 days, my kid is incredibly sick, and I can't understand what the f#$@ constitutes an emergency when she's pooping blood every 2 hours and needed a transfusion....I ALMOST carted to her Boston Children's but it was snowing again and she was so sick, it would not have been safe to move her. They were actually trying to move her back to the PICU but the nurses told them she was better off with them.
GI sent 'pretend baby doctor' up to deal with me...I still don't get the hierarchy of the hospital, there's the attending, the resident, the fellow, etc. the ones that were not real docs yet (who were like 25 years old) I referred to as pretend baby doctors, it would have been nice to have some sort of 'scorecard' because at one point, we figured out we were dealing with well over 70 doctors (all told) and countless nurses. So it seems it is the hospital policy, not GI about the scoping. Another thing about the doctors, you get who you get and we really lucked out. Her GI doc is wonderful. She's a researcher and been at this a long time.
Her scope was scheduled for Monday. We also had endocrine, surgery, and too many other specialists to mention hovering. One of the fellows was a nice woman, but a little on the 'icy' side. Another one was from far away and her husband was in Michigan. They do the scope and Bec being Bec has asked the icy woman to hold her hand while she goes to sleep. She was actually the one doing the scope under the direction of her GI doc (the good one).
GI doc comes out about an hour later and says it was the worse case she has EVER seen in 25 years of practice and tells us it's Ulcerative Colitis, There is no damage any place else, and she did not get to see ALL of her small intestines. So she says she wants to start her right away on the Remicade (she's been on prednesone for days, and a bunch of other drugs for the nausea, etc.). The icy fellow is missing, when she comes out it was because she promised Bec she'd still be holding her hand when she work up and she did, then she tells me that's her favourite patient.She says she's going to 'jump' over all other drugs and go right to Remicaid because it's so bad.
After the scope, her doc leaves on vacation. She calls EVERY DAY to talk to her/me. She also leaves the other guy in charge. So after the scope, she's till on prednesone, so I asked him about it and he tells me that she's doing so well on it, he's going to leave her on it. Really? Still throwing up and all kinds of blood every 2 hours? Her other doc said Remicade, oh no, he feels this is better. She now also has a pic line and a catheter. I count 15 bags running off 4 pumps on her IV pole. And now all her counts are way off, so her feet are swelling, she ends up with ingrown toenails and we have to get the podiatry team involved.
They end up putting in an NG tube to vacuum the fluids out of her stomach, she's also on Adavan and Benedryl for vomiting, and it keeps it a bit in check as long as she gets them on time, but apparently he changed that to PRN so it lapsed.
She has a few more tests, one was with contrast, which she threw up all over the place in the radiology department because there are no nurses there, we had no bucket for her, she lapsed on all her meds because we were down there for 7 hours.
4 days into her vacation, she had such a bad night and was so sick, the nurse had to change her scrubs, they had to call in housekeeping to clean her bathroom. The other GI doc comes in on Friday and can't even look at me and says well when you need to have another transfusion, it's time for the Remicade, it was all I could do to keep from choking him. In the end, he cost her another 10 days in the hospital. Now she has an NG tube to keep everything out of her stomach because she's still throwing up. Her pancreas counts are up, so she needs an ultrasound for that (result of the now used TPN). Her main doc comes back from vacation with a Florida sweatshirt for her and a card where she wrote she was the bravest girl she'd every met.
And Bec is always Bec. She smiled through everything (just one breakdown, the night I was crazy mom). She had the nurses fighting over who had her, and she was not an easy gig. But she was so pleasant about it. Can't say enough about the nurses either, from Bob (who was never her nurse, but on the floor) who would come in and steal her flowers, pretend to wash his hair in her toilet, to Maria, who washed her hair in the bed one day, Kendra and Jen were her favourites......all told, she was in from 2/2 - 3/2 and we still saw nurses we hadn't seen before.
She has lots more tests, upper/lower GI with contrast, x ray, ultrasounds for blockages, etc.
Bec's pain threshold is unbelievably high and now they've had to get out the morphine for her. GI says that the thing with UC is that if they take out her colon, it's all over, she's cured, which is something to think about when you see what is going on in front of you. Takes them a week to recoup from the other GI doc's mistake. She finally gets her Remicade. We stick around for another round of Remicade as well.
There was a lot more stupid stuff (like doc from hell insisting she eat real food because she's throwing up anyway and orders her a full breakfast when the kid hasn't had solid foods in going on 3 months!!!) that happened. Finally a month to the day she gets to go home.
She sees GI a week after she gets out and they schedule an MRE for her the following week, just to confirm the diagnosis. Her doc has this inkling that it may be Crohn's and not UC because there is a 1" section of her colon that is fine. Her entire colon is destroyed, but there's this 1" gap and she said that's indicative of Crohn's. The MRE is on a Sunday, we have GI appointment on Monday. Go to GI on Monday (after they call the house to confirm we are stopping in BEFORE Remicade, I tell them, we don't have Remcade, they ask again to make sure we stop in GI first).
Get to GI and her doc says they are admitting her. She had an abscess. They didn't see it before because it was behind where the scope starts looking. It's in the worst place possible because it's so close to the sphincter muscle that if it gets damaged, she'll be in incontinent the rest of her life.
She immediately 'lobbies' for the 5th floor. We now have a new crop of 'pretend baby docs' on service as well as a new surgery team. So it's better this time as she's not really sick, though she's hooked up to IV antibiotics. After a few days, they aren't doing the trick so the new surgeon says he's going in to take a look. He ends up putting in a Seton (drain) that runs from inside to outside to keep it open so it doesn't get more infected. She gets another dose of Remicade and goes home (and yes missed Taylor Swift coming to visit by a few hours). They added an older Crohn's drug to her routine as the Remicade isn't working as well as they'd like. The side effects are horrible, but there's nothing you can do. She now has an 80% leukemia risk. No immune system for the most part.
The rest of the summer has been back and forth to GI and surgery (to continually get the Seton cauterized) and Remicade land, where her fave nurse, Kendra, now works. They took the Seton out mid July. She has a pill organizer because she has so many things to take. A lot of her hair has fallen out, her ponytail is 1/4 the size it used to be.
Last week, they admitted her (again she lobbies for the 5th floor) to repeat the scope as they like to wait at least 6 months to look again. She ended up in for 4 days total. It looks a lot better, but has a long way to go. The day after we got out, she ended up in the ER with bleeding as the abscess is still nasty looking, so meds were changed again. They will be doing another MRE soon to look at the fistulas (she had 3).
It just sucks as a disease, and it sucks even more to 'dump' this on a kiddo that already has challenges in life. You also meet well meaning people who have mild variations of the disease and tell her things like 'oh I just watch what I eat and take steroids when it flares up'. Her doctor did tell her she would never be that person. The semi good news is Remicade is fairly new and CCFA spends 95% of their donations on research, so there's bound to be something coming down the line at some point. We raised over $5000 for CCFA last month, so every little bit helps.
Her GI and Surgeon have both said they are in no hurry to send her over to the 'adult world' of medicine and as long as we have them, regardless of our pediatrician, she can continue at the children's hospital (it does 'help' that she's special needs). The nice thing is the hospital is not huge, so she/we know everyone there. There's only 1 person in admissions, the ER nurses all remembered her (docs are on rotation because it's a teaching hospital, so they are not as constant, but we were admitted for so long, she saw everyone (rotation is 2 weeks)), and the 5th floor nurses of course all knew her.
Oh and yes I still have stage 3 breast cancer, which I'll say is NOTHING compared to watching this.
Thursday, October 16, 2014
Tuesday, December 24, 2013
year from hell - or my life is not my own
So I was really hoping to write more over here, but then life got in the way.
Stage 3 breast cancer. All I can say is cancer doesn't care how well you take care of yourself (never smoked, vegetarian for most of my life, organic for the past 10 years, gluten free for the past 8, etc), doesn't discriminate at all.....no family history (well most female relatives are deceased and deceased long enough that they probably never had any mammograms anyway).
Just the fact that something smaller than 1/2 a grain of rice can cause this much turmoil is someone's body is just beyond belief. I still have days where I catch myself wondering what the hell happened to my life? Plus it's silent, you can't feel it (well it was so small no one could) you don't feel bad....people ask me how I'm feeling and this is not like you had an attack of appendicitis and had it taken out and felt better. I felt NOTHING and now have felt like crap for the past 8 months.
Those of you who don't know the whole story, I may as well start from the beginning. Over 50 (yikes!), yearly mammograms. My philosophy for some strange reason (maybe I always knew this would happen? more on that in a bit) was that I'd see my doc in the fall and have the mammogram in the spring, that way whatever showed up would have no more than a 6 month head start on me......well if you can't feel it, that goes right out the window.
So I went in February for my yearly and got 'called back' - not unusual though it hasn't happened in some time, I do have some cysts, but I think with the new digital films, they can see them and know they are there year after year, so don't call you back. I had a feeling all along that all was not well, and I can't explain why. So I went back and had another one with an ultrasound. The tech was very very serious and spent close to an hour looking around, then she went out of the room and the Chief of Radiology came in and looked at the stills she'd snapped and kept saying, that's not it, no that's not it.....she started looking around and lo and behold all of a sudden this ugly, tiny, tick-like 'thing' appears on the screen. It had all kinds of 'legs' coming out from it. Honestly, I knew right then and there. She started talking about scheduling a biopsy, the earliest they could get was in 10 days. I got out to my car and was saying 'what the hell just happened in there?' to myself.....
10 days later I went back for the biopsy, now I don't do blood and guts AT ALL. I was looking at the ultrasound, which the tech spent close to an hour trying to find it again (so tiny), the doctor was going on and on about what she going to do, the noises the 'gun' would make, how many samples she'd get, how she'd put in a marker when she was done, etc. So I'm looking away with my arm up over my head and I could feel stuff running down my neck, so I ask her if it's blood and she says yes, we'll clean you up when we're done...wonderful. I'll also talk about the amazing medical people later as well. There was a CNA in the room and she had to put her full body weight on the gauze to help reduce any later swelling, she was a big girl, very very nice. When you have kids, you kinda lose any sense of modesty, all these people (Women and Infants is a teaching hospital) coming in to look up your crotch. Having breast cancer is almost as bad. So I have this very nice young woman with all her weight on my breast to stop the bleeding for 15 minutes, so we have a nice conversation (I mean what else are ya gonna do???) about my tattoos. And then I had to have another mammogram to make sure the marker was in place. Gee if you think it's nothing, why do you need a marker to 'find' it again? They also told me that 80% of biopsies are negative.
I got home from that and I went online to my AFLAC policy to put in that I'd had a mammogram. I've had AFLAC for about 10 years, as a State worker, we don't get disability insurance, so you have to buy your own. The guy that reps us when I signed up had told me about this 'woman's' policy that pays for a wellness visit and any cancer screening (pap smear, colonoscopy) and a yearly mammogram. It pays out more than you pay for the policy. While I'm on the site putting the info in, I see a PDF that says 'cancer policy', so I clicked on it, and this gobbledygook comes up. I email my rep and ask him, did I buy a cancer policy? There's NO cancer in my family, it's all heart disease, NONE. I have NO IDEA why I bought a cancer policy but I did. I told him I just had a biopsy, he told me if God forbid it comes back yes, to tell him and he'll get the ball rolling on my benefits.
They say about a week for results....I knew though, the demeanor in the room, you could just tell, I asked them later (had the same 'team' the day of my surgery) if they can 'tell' and they said they don't like to make those calls as they are not the doctors, but yes, sometimes they can. A few days later, my gyn (she actually delivered Becca, my youngest, and had left the practice I was in. My main doc had become an admin at the hospital, so I went to her after he was gone) called me while I was at work and started with I'm sorry but I have bad news. This was also the day I had decided to get tickets to the Rolling Stones no matter how much money it cost as I had never seen them and they ain't getting any younger. The fact that she called me on my cell at work and EVERYBODY happened to be there meant that EVERYBODY knew. She also asked me who I wanted as a surgeon. In RI, there is only ONE guy, I had seen him years ago to look at the cysts that I had, and he's continually written up as being THE best, so I said him.
I drove around aimlessly for a bit and ended up stopping at my hematologist who takes care of my IV (for immunology issues). He's also oncology. I left him a message (he NEVER called me back, btw). I got home and my gyn called me again and said, 'Listen, I know you didn't hear anything after I told you I had bad news, so I'm calling you again, do you have any questions?' she then went on to give me her cellphone and home number in case I needed anything, but said she was not in charge of this, the surgeon would be, and she had gotten me in with him the next day.
One thing about breast cancer, you need to stay OFF the internet. It's very individual and what works for you doesn't work for others, no 2 people are the same. There's no good news on the internet.
I went to see the surgeon and he told me it was 'nothing' in the scheme of cancers. It was tiny. It wasn't there last year. He told me I was the perfect candidate for a new process called targeted radiation, in fact, chemo was optional for this. He'd set up the surgery, he'd put in a 'placeholder' for the apparatus, and instead of 8 weeks of DAILY radiation, I'd be done in 5 days. He told me this would be a blip on the radar and be 2 weeks out of my life. He held his hands apart, wide and said if this is stage 4 pancreatic cancer, then he had his hands almost touching, and said this is you. He booked me into see the Radiation doc the next day.
I went to see her, she's a 'wicked' (as we say in New England) girlie girl. High spikey heels, dressy dress, talks with an itty bitty voice, but very very nice. Behind her I see this: http://www.mammosite.com/physicians/radiation-therapy/how-it-works.cfm and ask her what's that...she tells me that's the target radiation device......I say so when you take it out, I'm asleep, right....no.......lidocaine......no......we tell you to take your pain meds that day, we just pull it out......once again, I'm not blood and guts, but I tell her if I'm on the floor passed out, just keep going, because it's 5 days versus 35 days, gotta suck it up and do it.
In the meantime, it's St. Paddy's day. I go out with my friends. They offered to shave their heads in support (they didn't, though they work in the public, but I know many who have done it in support and reaped the rewards of doing such a kind thing for a friend, whatever). Only my 'fourth' child shaved her head for me (and it was adorable) and my daughter's boyfriend.
There are lots more tests, bloodwork, an MRI where you lay on your stomach and your boobs hang down underneath you, all totally mortifying experiences, but once again, the people, techs, nurses are amazingly kind. At one point, I stopped at billing to pick up info as AFLAC needed certain things to pay me. Let's start that they paid me $3000 just for HAVING cancer. I see an extra paper (I had paid my surgeon for my record from him, $25, yet the same info was FREE from the hospital, go figure) from what I already had talking about hormone receptors. So I call him and ask about it, they ask me where did I get that? At the hospital....What are you doing there? I had to have an MRI....Who ordered that? Radiation......we'll get back to you......
I have my surgery at the end of April. You arrive early because you have to go next door to RI Hospital and have this radioactive dye injected into you to see where that area drains, because they take out what is referred to as the 'sentinel' lymph nodes....just to see if it has spread there because there is ductwork....the guy doing the x ray from that looks like Turk from Scrubs, but I lost it in there because it's all just becoming too real, once again, what the hell happened here? I see my surgeon before I go in and once again, he reiterates that this is nothing, don't worry, you'll be fine, it'll be over before you know it.
Since my surgeon knows my feelings about blood and guts, he has me bandaged and taped up the wazoo, but I can 'feel' this thing under my arm, a tube, it's the 'placeholder' for the targeted radiation thingy.....ewwww.
I wasn't THAT sore, most of the breast tissue is fatty, I did hurt a lot under my arm where he took out the lymph nodes.
5 days later I'm back in his office. He starts with I'm really sorry (hate it when they start with that phrase). I think we got it all, but it was in the margins of surrounding tissue and in all the lymph nodes we took out. I'm going to refer you to an oncologist and you can speak to him......and then he says, you are no longer a candidate for targeted radiation (and he knows how skeeved I was about that) so I say, halfheartedly, 'yay? and I went from stage 1 to stage 3. Sucks to be me.
He unwraps me (my radiation doc has said she thinks he has stock in the tape company, it took weeks and all kinds of people to get that VERY sticky tape residue off my skin) and then he takes out this huge syringe and attaches it to the placeholder to 'deflate' it (EWWWWWWWWWWWWWWW) and yanks it out (ouch!!!). He also profusely apologizes to me for telling me it was nothing. He's been doing this a long time and usually something so tiny is not this aggressive.
He gets me in with oncology the next day (see how amazing these people are, they move right along with getting you in with the other 'best' people).
The oncologist is adorable, he just is too cute for words. He is the chief researcher for the hospital. He tells me he has a study (and they have your tissue as they own it when it comes out) that shows that chemo only is effective on women with small cell cancers 4% of the time. Me being a numbers person and a geek, ask him a lot of statistics questions. Recurrence rate for 5 years is 27%, they won't even quote you 10 years. I actually have 2 types of cancer in that tissue, plus it was in all 3 lymph nodes. His study does not take into consideration that it has spread. I'm not holding up radiation by waiting for his results because they won't start until 3-4 week after anyway. In my head, I'm deciding I'm doing chemo anyway, I'm not going to kick myself in 5 years. At first, I didn't think he had any sense of humour. He was going on about wearing sunscreen (being Armenian (well and Irish) I usually don't need it) and I said why am I going to get cancer? and he didn't laugh. But last month when we were discussing the hormone medication, I told him I heard it made you 'fat and crabby' and why can't they ever give you anything that makes you happy and skinny, and he looked me straight in the eye and said, 'Oh, like cocaine?'......so he does have one.
I go back (end of May now) and he tells me I'm not one of the 4% of women, but he has another study where he throws your name into the computer and the computer picks half for chemo and half not for chemo (not experimental or a blind study, you could never do a blind study in humans for chemo unless there was no hope), I figure I'll take my chances (he then 'follows' you for 15 years) and if it comes up no, I'll do it anyway. Well this time it came up yes. I meet with this huge team I now have. I have a care coordinator, a research coordinator, a nutritionist, a chemo nurse, I also continued to see my acupuncture doctor (who used to work at the breast center, but was on her own for a few years now) and a few other people, including this really nice but very strange guy from Czech republic who does the lymphodemia clinic (yes, no needles, no tattoos, no nothing on my left side EVER because of the lymph nodes being gone, I told my doc using the word 'never' to me is like a dare!)
They told me not to drink (not that I drink that much, but your liver is in overdrive so why make it harder?).
They put off chemo for a couple of weeks because I have bec's graduation and the Rolling Stones, but not long enough for her party, you have to start at some point.
I started chemo the 3rd week of June, every 3 weeks, 4 times. The summer sucked. It was 100 degrees most of it, I was REALLY sick (crawling out of my skin) from the anti nausea drugs the first round and missed her graduation party, where I'd planned to tell a number of people in person, because of that, never took them again and was 'fine' (as fine as you can be on chemo)...spent a week in the hospital for fevers, was in the ER for fevers and NOT admitted more than I can count, had to get a shot the day after to keep me out of the hospital....really sucked....I spent most of it on my new couch in my house without A/C, food tasted terrible, drank mostly lemon flavoured water and ate applesauce. And United HELLth had a $100 co pay every time I went to the ER (as my doctor REQUIRED) and was not admitted.
I had friends who stepped up and were amazing.....I had strangers become friends and be amazing. My family was great, I had family crawl outta the woodwork, like my cousin :) ....I lost all my hair. I didn't do a lot all summer, but a few people came and made me go to the beach or out for the day just to get me away from it. I bought a new car (AFLAC money, well I traded in my 1 year old car that I wasn't fond of so it wasn't THAT much, they also 'paid' for my Stone's tickets). I tried to find my happy place and couldn't for a long time. I did get to 'the block' a couple of times, once by myself and once with a friend/my co worker who asked to go last minute, as that was always my 'happy place'.
Speaking of AFLAC, they have been great. I can't even begin to tell you how much money they have given me, tax free because it's not replacing my income, it's an insurance policy....and yes I am talking tens of thousands of dollars. Right now, I get $300 for EVERY chemo script I fill (every month, for years) and I don't have a copay for that at all. $300 EVERY time I went to radiation (33 times). I'm just banking it all because if I ever can't work, I'm so uninsurable. Once again, NO IDEA why I bought the policy.
I worked through most of it, even though I didn't feel like it, it was a nice distraction (though week 2 you can't be around a lot of people because your immune system plummets), I continued agility with the dog (exhausting, but when you have a Border Collie, you can't take a break from that stuff). He continued to compete (and was an idiot but manged to make his times and place in tunnelers). I started back teaching when fall came, and my class was an amazing group of students. I've never had such a great class in all my years at RIC (and they all passed, and I still had 22 of them at the end, I thought maybe they just felt bad for me, but several emailed me and the department chair and said I was the best professor they'd ever had).
I started radiation end of September and that was EVERY day. Before that, they measure you and you get 'prison' tattoos because it has to be exact. They cannot radiate directly over your heart so they have a nuclear physicist plot the angles and you get radiated from (in my case) 5 different angles. I got 2nd degree burns 3/4 of the way though it and thought THAT was going to scar me for life, and they did quit a week early because it was so bad. I couldn't wear a seat belt for weeks, couldn't even stand clothing on it. I had burn cream, holistic creams, a cream from my acupuncture doctor that smelled like Chinese food, nothing helped, it was raw, peeling every day, horrible for almost a month. I still have uncomfortable places where they 'shot' me. And I got exhausted, not all the time, but it was like a 'wave' of it....nothing that sleep would help, pure exhaustion, and I still have that. Still have significant pain under my arm, which runs down my arm to my pinky and finger next to it, which I'll probably always have. Pain where the incision was when I lay on it. Sick from the meds, but I refuse to give in to it and just keep going. My oncologist told me to stop beating myself up about how truly tired and crappy I feel because of what I've been through, but I just think I want it over with and once I feel more like myself, that'll be good.
The next hurdle, when does it come back? Well it never really went away as I'm still on chemo because it's in my bloodstream, ya'd think after all this it'd just go away but no...and daily hormone medicine for 5 years because it's hormone receptor positive, which means if you stop them, it should NEVER come back, which is my oncologist's goal (and mine of course).
So the nurses, medical people, docs? Amazing people, every one of them. You're having a bad day (and there were a few, I really tried to keep that to myself and lose it in the shower or someplace alone) they are there to give you a hug or a word of encouragement. They yell at you for things like carrying your pocketbook over the shoulder of the arm where the lymph nodes came out (her voice rings in my head every time I pick up my purse now!) The radiation people you see EVERY day for 2 months, so you tend to get closer to them than the others. And of course, this being RI, 2 of them knew me from high school.
The day of my surgery, I had to have another MRI, ultrasound, and mammogram, all done by my original diagnostic team, including the CNA who pushed me around in the wheelchair that day. In the ER, the hospital is the baby hospital, no sick people there, just pregnant ones, they get you right into their oncology suite (the intake nurse told me their chemo patients are their VIPs) and you see the same team each time, And poor Dr. Fogarty is always on call.
So my hair is growing back, it's blonde (??) not sure what it's going to end up looking like. I did not get a wig even though I could have for free, there just wasn't anything that looked like my hair, plus it was 100 degrees all summer. I wore my Red Sox hat and they won the World Series, now I'm wearing my Pats hat and though they've been the heart attack team this year and I doubt they can win the Super Bowl, I'm trying. My friend at work also got diagnosed a couple of months ago, her's is different (not spread, not hormone positive) but she has the same doctors and team that I had so I know she's in good hands and it's been nice to have someone to help though this process. She's also very funny and has a great attitude about it, she cracks me up constantly because I think right now you can only joke about something like this with someone going through, or just gone though it. I have friends that have had cancer and breast cancer, but not here, in state, and not recent, the treatments change, etc.
I have learned that though I thought I was pretty strong, I'm really not. I thought all the stuff with Becca was hard, and parts of my life were hard (losing my parents young, getting divorced, etc.), but this has been the absolute worst. Finding out EXACTLY who your friends are has been a huge reality check. It doesn't matter if you've been friends for 40 years or 4 months, not that I ever expected anyone to 'help' me as I'm just not like that. I don't normally ever ask for help, but there are times where you just need it, you need your (closest) friend to talk to and I didn't have that, for whatever reason. (I have others that have stepped up though, so turned out not to be so much of an issue as a disappointment). I kept most of this to myself because I didn't want to burden anyone, although I did 'whine' online from time to time and felt bad about it.....anyway, this has made me question my perception of my relationships and I ended up deciding to just move on because in the end, it's THEIR issue, their choices, their lives that got in the way I guess, and you cannot control the way people react, or expect anything from anyone, ever, like I had ANY control over this!
I know people that you never ask how they are because they'll go on about their ear, their shoulder and every freakin' minor health issue in the big scheme of things for 20 minutes and always have a worse case scenario story, or have to top whatever you may have going on. I NEVER wanted to be that person and made a very conscious effort over the years not to be, and with this nonsense especially, to be sure to ask about them and their lives and not go on about cancer, besides, you get so sick of talking about cancer.....but then there are those that you don't see very often and you have to explain where your hair went, or where you've been.
You make time for a friend, even a little time, especially when they are in the hospital and or faced with a catastrophic illness. Little things like stopping by with coffee or getting out of the house go a long way and certainly help you forget at least for a moment that this nonsense that you have NO control over and has taken over your life is present.
So that's been my last 9 or so months. I had to go back to my gyn last week, where this all began. She hugged me as I haven't seen her since all this started....now we'll see what 2014 will bring, I can't imagine it could be much worse, but I'm knocking on wood for that. As I've said all along, I don't have time for this nonsense, but you have no choice. You have to make time, you have to take it easy (I deal by going to bed by 8 pm most nights). I'm not the type to sit home and mope about it, although some days I'm just so exhausted and/or sick that I'm forced to, there's nothing I did to 'deserve' this, or that I can question myself on (did I stand too close to the microwave? It's Monsanto and their GMO's fault (I really believe that's part of it....don't get me started on our food supply being poisoned!)), should have done, shouldn't have done......I go to who they told me to, when they told me to (for the most part....there were times when I couldn't and then they found out I was still working, they thought I was crazy, in fact they assume you are not working through this). I heard one story from my radiation people that patients come in and need TWO treatments, and not even for cancer, and are asking to get 'written' out of work, I didn't ask until visit 30 and that was just because I was so burned I couldn't stand clothing, the seat belt, etc.
Those of you that have distracted me, old and new friends, online and real life, I can never thank or repay you for your kindness. Thank you to those of you who have been incredibly kind and supportive this year, to me and my family, you are truly the best friends I could ever ask for and I will never forget the little and big things that you did for me and with me. Happy New Year.
Stage 3 breast cancer. All I can say is cancer doesn't care how well you take care of yourself (never smoked, vegetarian for most of my life, organic for the past 10 years, gluten free for the past 8, etc), doesn't discriminate at all.....no family history (well most female relatives are deceased and deceased long enough that they probably never had any mammograms anyway).
Just the fact that something smaller than 1/2 a grain of rice can cause this much turmoil is someone's body is just beyond belief. I still have days where I catch myself wondering what the hell happened to my life? Plus it's silent, you can't feel it (well it was so small no one could) you don't feel bad....people ask me how I'm feeling and this is not like you had an attack of appendicitis and had it taken out and felt better. I felt NOTHING and now have felt like crap for the past 8 months.
Those of you who don't know the whole story, I may as well start from the beginning. Over 50 (yikes!), yearly mammograms. My philosophy for some strange reason (maybe I always knew this would happen? more on that in a bit) was that I'd see my doc in the fall and have the mammogram in the spring, that way whatever showed up would have no more than a 6 month head start on me......well if you can't feel it, that goes right out the window.
So I went in February for my yearly and got 'called back' - not unusual though it hasn't happened in some time, I do have some cysts, but I think with the new digital films, they can see them and know they are there year after year, so don't call you back. I had a feeling all along that all was not well, and I can't explain why. So I went back and had another one with an ultrasound. The tech was very very serious and spent close to an hour looking around, then she went out of the room and the Chief of Radiology came in and looked at the stills she'd snapped and kept saying, that's not it, no that's not it.....she started looking around and lo and behold all of a sudden this ugly, tiny, tick-like 'thing' appears on the screen. It had all kinds of 'legs' coming out from it. Honestly, I knew right then and there. She started talking about scheduling a biopsy, the earliest they could get was in 10 days. I got out to my car and was saying 'what the hell just happened in there?' to myself.....
10 days later I went back for the biopsy, now I don't do blood and guts AT ALL. I was looking at the ultrasound, which the tech spent close to an hour trying to find it again (so tiny), the doctor was going on and on about what she going to do, the noises the 'gun' would make, how many samples she'd get, how she'd put in a marker when she was done, etc. So I'm looking away with my arm up over my head and I could feel stuff running down my neck, so I ask her if it's blood and she says yes, we'll clean you up when we're done...wonderful. I'll also talk about the amazing medical people later as well. There was a CNA in the room and she had to put her full body weight on the gauze to help reduce any later swelling, she was a big girl, very very nice. When you have kids, you kinda lose any sense of modesty, all these people (Women and Infants is a teaching hospital) coming in to look up your crotch. Having breast cancer is almost as bad. So I have this very nice young woman with all her weight on my breast to stop the bleeding for 15 minutes, so we have a nice conversation (I mean what else are ya gonna do???) about my tattoos. And then I had to have another mammogram to make sure the marker was in place. Gee if you think it's nothing, why do you need a marker to 'find' it again? They also told me that 80% of biopsies are negative.
I got home from that and I went online to my AFLAC policy to put in that I'd had a mammogram. I've had AFLAC for about 10 years, as a State worker, we don't get disability insurance, so you have to buy your own. The guy that reps us when I signed up had told me about this 'woman's' policy that pays for a wellness visit and any cancer screening (pap smear, colonoscopy) and a yearly mammogram. It pays out more than you pay for the policy. While I'm on the site putting the info in, I see a PDF that says 'cancer policy', so I clicked on it, and this gobbledygook comes up. I email my rep and ask him, did I buy a cancer policy? There's NO cancer in my family, it's all heart disease, NONE. I have NO IDEA why I bought a cancer policy but I did. I told him I just had a biopsy, he told me if God forbid it comes back yes, to tell him and he'll get the ball rolling on my benefits.
They say about a week for results....I knew though, the demeanor in the room, you could just tell, I asked them later (had the same 'team' the day of my surgery) if they can 'tell' and they said they don't like to make those calls as they are not the doctors, but yes, sometimes they can. A few days later, my gyn (she actually delivered Becca, my youngest, and had left the practice I was in. My main doc had become an admin at the hospital, so I went to her after he was gone) called me while I was at work and started with I'm sorry but I have bad news. This was also the day I had decided to get tickets to the Rolling Stones no matter how much money it cost as I had never seen them and they ain't getting any younger. The fact that she called me on my cell at work and EVERYBODY happened to be there meant that EVERYBODY knew. She also asked me who I wanted as a surgeon. In RI, there is only ONE guy, I had seen him years ago to look at the cysts that I had, and he's continually written up as being THE best, so I said him.
I drove around aimlessly for a bit and ended up stopping at my hematologist who takes care of my IV (for immunology issues). He's also oncology. I left him a message (he NEVER called me back, btw). I got home and my gyn called me again and said, 'Listen, I know you didn't hear anything after I told you I had bad news, so I'm calling you again, do you have any questions?' she then went on to give me her cellphone and home number in case I needed anything, but said she was not in charge of this, the surgeon would be, and she had gotten me in with him the next day.
One thing about breast cancer, you need to stay OFF the internet. It's very individual and what works for you doesn't work for others, no 2 people are the same. There's no good news on the internet.
I went to see the surgeon and he told me it was 'nothing' in the scheme of cancers. It was tiny. It wasn't there last year. He told me I was the perfect candidate for a new process called targeted radiation, in fact, chemo was optional for this. He'd set up the surgery, he'd put in a 'placeholder' for the apparatus, and instead of 8 weeks of DAILY radiation, I'd be done in 5 days. He told me this would be a blip on the radar and be 2 weeks out of my life. He held his hands apart, wide and said if this is stage 4 pancreatic cancer, then he had his hands almost touching, and said this is you. He booked me into see the Radiation doc the next day.
I went to see her, she's a 'wicked' (as we say in New England) girlie girl. High spikey heels, dressy dress, talks with an itty bitty voice, but very very nice. Behind her I see this: http://www.mammosite.com/physicians/radiation-therapy/how-it-works.cfm and ask her what's that...she tells me that's the target radiation device......I say so when you take it out, I'm asleep, right....no.......lidocaine......no......we tell you to take your pain meds that day, we just pull it out......once again, I'm not blood and guts, but I tell her if I'm on the floor passed out, just keep going, because it's 5 days versus 35 days, gotta suck it up and do it.
In the meantime, it's St. Paddy's day. I go out with my friends. They offered to shave their heads in support (they didn't, though they work in the public, but I know many who have done it in support and reaped the rewards of doing such a kind thing for a friend, whatever). Only my 'fourth' child shaved her head for me (and it was adorable) and my daughter's boyfriend.
There are lots more tests, bloodwork, an MRI where you lay on your stomach and your boobs hang down underneath you, all totally mortifying experiences, but once again, the people, techs, nurses are amazingly kind. At one point, I stopped at billing to pick up info as AFLAC needed certain things to pay me. Let's start that they paid me $3000 just for HAVING cancer. I see an extra paper (I had paid my surgeon for my record from him, $25, yet the same info was FREE from the hospital, go figure) from what I already had talking about hormone receptors. So I call him and ask about it, they ask me where did I get that? At the hospital....What are you doing there? I had to have an MRI....Who ordered that? Radiation......we'll get back to you......
I have my surgery at the end of April. You arrive early because you have to go next door to RI Hospital and have this radioactive dye injected into you to see where that area drains, because they take out what is referred to as the 'sentinel' lymph nodes....just to see if it has spread there because there is ductwork....the guy doing the x ray from that looks like Turk from Scrubs, but I lost it in there because it's all just becoming too real, once again, what the hell happened here? I see my surgeon before I go in and once again, he reiterates that this is nothing, don't worry, you'll be fine, it'll be over before you know it.
Since my surgeon knows my feelings about blood and guts, he has me bandaged and taped up the wazoo, but I can 'feel' this thing under my arm, a tube, it's the 'placeholder' for the targeted radiation thingy.....ewwww.
I wasn't THAT sore, most of the breast tissue is fatty, I did hurt a lot under my arm where he took out the lymph nodes.
5 days later I'm back in his office. He starts with I'm really sorry (hate it when they start with that phrase). I think we got it all, but it was in the margins of surrounding tissue and in all the lymph nodes we took out. I'm going to refer you to an oncologist and you can speak to him......and then he says, you are no longer a candidate for targeted radiation (and he knows how skeeved I was about that) so I say, halfheartedly, 'yay? and I went from stage 1 to stage 3. Sucks to be me.
He unwraps me (my radiation doc has said she thinks he has stock in the tape company, it took weeks and all kinds of people to get that VERY sticky tape residue off my skin) and then he takes out this huge syringe and attaches it to the placeholder to 'deflate' it (EWWWWWWWWWWWWWWW) and yanks it out (ouch!!!). He also profusely apologizes to me for telling me it was nothing. He's been doing this a long time and usually something so tiny is not this aggressive.
He gets me in with oncology the next day (see how amazing these people are, they move right along with getting you in with the other 'best' people).
The oncologist is adorable, he just is too cute for words. He is the chief researcher for the hospital. He tells me he has a study (and they have your tissue as they own it when it comes out) that shows that chemo only is effective on women with small cell cancers 4% of the time. Me being a numbers person and a geek, ask him a lot of statistics questions. Recurrence rate for 5 years is 27%, they won't even quote you 10 years. I actually have 2 types of cancer in that tissue, plus it was in all 3 lymph nodes. His study does not take into consideration that it has spread. I'm not holding up radiation by waiting for his results because they won't start until 3-4 week after anyway. In my head, I'm deciding I'm doing chemo anyway, I'm not going to kick myself in 5 years. At first, I didn't think he had any sense of humour. He was going on about wearing sunscreen (being Armenian (well and Irish) I usually don't need it) and I said why am I going to get cancer? and he didn't laugh. But last month when we were discussing the hormone medication, I told him I heard it made you 'fat and crabby' and why can't they ever give you anything that makes you happy and skinny, and he looked me straight in the eye and said, 'Oh, like cocaine?'......so he does have one.
I go back (end of May now) and he tells me I'm not one of the 4% of women, but he has another study where he throws your name into the computer and the computer picks half for chemo and half not for chemo (not experimental or a blind study, you could never do a blind study in humans for chemo unless there was no hope), I figure I'll take my chances (he then 'follows' you for 15 years) and if it comes up no, I'll do it anyway. Well this time it came up yes. I meet with this huge team I now have. I have a care coordinator, a research coordinator, a nutritionist, a chemo nurse, I also continued to see my acupuncture doctor (who used to work at the breast center, but was on her own for a few years now) and a few other people, including this really nice but very strange guy from Czech republic who does the lymphodemia clinic (yes, no needles, no tattoos, no nothing on my left side EVER because of the lymph nodes being gone, I told my doc using the word 'never' to me is like a dare!)
They told me not to drink (not that I drink that much, but your liver is in overdrive so why make it harder?).
They put off chemo for a couple of weeks because I have bec's graduation and the Rolling Stones, but not long enough for her party, you have to start at some point.
I started chemo the 3rd week of June, every 3 weeks, 4 times. The summer sucked. It was 100 degrees most of it, I was REALLY sick (crawling out of my skin) from the anti nausea drugs the first round and missed her graduation party, where I'd planned to tell a number of people in person, because of that, never took them again and was 'fine' (as fine as you can be on chemo)...spent a week in the hospital for fevers, was in the ER for fevers and NOT admitted more than I can count, had to get a shot the day after to keep me out of the hospital....really sucked....I spent most of it on my new couch in my house without A/C, food tasted terrible, drank mostly lemon flavoured water and ate applesauce. And United HELLth had a $100 co pay every time I went to the ER (as my doctor REQUIRED) and was not admitted.
I had friends who stepped up and were amazing.....I had strangers become friends and be amazing. My family was great, I had family crawl outta the woodwork, like my cousin :) ....I lost all my hair. I didn't do a lot all summer, but a few people came and made me go to the beach or out for the day just to get me away from it. I bought a new car (AFLAC money, well I traded in my 1 year old car that I wasn't fond of so it wasn't THAT much, they also 'paid' for my Stone's tickets). I tried to find my happy place and couldn't for a long time. I did get to 'the block' a couple of times, once by myself and once with a friend/my co worker who asked to go last minute, as that was always my 'happy place'.
Speaking of AFLAC, they have been great. I can't even begin to tell you how much money they have given me, tax free because it's not replacing my income, it's an insurance policy....and yes I am talking tens of thousands of dollars. Right now, I get $300 for EVERY chemo script I fill (every month, for years) and I don't have a copay for that at all. $300 EVERY time I went to radiation (33 times). I'm just banking it all because if I ever can't work, I'm so uninsurable. Once again, NO IDEA why I bought the policy.
I worked through most of it, even though I didn't feel like it, it was a nice distraction (though week 2 you can't be around a lot of people because your immune system plummets), I continued agility with the dog (exhausting, but when you have a Border Collie, you can't take a break from that stuff). He continued to compete (and was an idiot but manged to make his times and place in tunnelers). I started back teaching when fall came, and my class was an amazing group of students. I've never had such a great class in all my years at RIC (and they all passed, and I still had 22 of them at the end, I thought maybe they just felt bad for me, but several emailed me and the department chair and said I was the best professor they'd ever had).
I started radiation end of September and that was EVERY day. Before that, they measure you and you get 'prison' tattoos because it has to be exact. They cannot radiate directly over your heart so they have a nuclear physicist plot the angles and you get radiated from (in my case) 5 different angles. I got 2nd degree burns 3/4 of the way though it and thought THAT was going to scar me for life, and they did quit a week early because it was so bad. I couldn't wear a seat belt for weeks, couldn't even stand clothing on it. I had burn cream, holistic creams, a cream from my acupuncture doctor that smelled like Chinese food, nothing helped, it was raw, peeling every day, horrible for almost a month. I still have uncomfortable places where they 'shot' me. And I got exhausted, not all the time, but it was like a 'wave' of it....nothing that sleep would help, pure exhaustion, and I still have that. Still have significant pain under my arm, which runs down my arm to my pinky and finger next to it, which I'll probably always have. Pain where the incision was when I lay on it. Sick from the meds, but I refuse to give in to it and just keep going. My oncologist told me to stop beating myself up about how truly tired and crappy I feel because of what I've been through, but I just think I want it over with and once I feel more like myself, that'll be good.
The next hurdle, when does it come back? Well it never really went away as I'm still on chemo because it's in my bloodstream, ya'd think after all this it'd just go away but no...and daily hormone medicine for 5 years because it's hormone receptor positive, which means if you stop them, it should NEVER come back, which is my oncologist's goal (and mine of course).
So the nurses, medical people, docs? Amazing people, every one of them. You're having a bad day (and there were a few, I really tried to keep that to myself and lose it in the shower or someplace alone) they are there to give you a hug or a word of encouragement. They yell at you for things like carrying your pocketbook over the shoulder of the arm where the lymph nodes came out (her voice rings in my head every time I pick up my purse now!) The radiation people you see EVERY day for 2 months, so you tend to get closer to them than the others. And of course, this being RI, 2 of them knew me from high school.
The day of my surgery, I had to have another MRI, ultrasound, and mammogram, all done by my original diagnostic team, including the CNA who pushed me around in the wheelchair that day. In the ER, the hospital is the baby hospital, no sick people there, just pregnant ones, they get you right into their oncology suite (the intake nurse told me their chemo patients are their VIPs) and you see the same team each time, And poor Dr. Fogarty is always on call.
So my hair is growing back, it's blonde (??) not sure what it's going to end up looking like. I did not get a wig even though I could have for free, there just wasn't anything that looked like my hair, plus it was 100 degrees all summer. I wore my Red Sox hat and they won the World Series, now I'm wearing my Pats hat and though they've been the heart attack team this year and I doubt they can win the Super Bowl, I'm trying. My friend at work also got diagnosed a couple of months ago, her's is different (not spread, not hormone positive) but she has the same doctors and team that I had so I know she's in good hands and it's been nice to have someone to help though this process. She's also very funny and has a great attitude about it, she cracks me up constantly because I think right now you can only joke about something like this with someone going through, or just gone though it. I have friends that have had cancer and breast cancer, but not here, in state, and not recent, the treatments change, etc.
I have learned that though I thought I was pretty strong, I'm really not. I thought all the stuff with Becca was hard, and parts of my life were hard (losing my parents young, getting divorced, etc.), but this has been the absolute worst. Finding out EXACTLY who your friends are has been a huge reality check. It doesn't matter if you've been friends for 40 years or 4 months, not that I ever expected anyone to 'help' me as I'm just not like that. I don't normally ever ask for help, but there are times where you just need it, you need your (closest) friend to talk to and I didn't have that, for whatever reason. (I have others that have stepped up though, so turned out not to be so much of an issue as a disappointment). I kept most of this to myself because I didn't want to burden anyone, although I did 'whine' online from time to time and felt bad about it.....anyway, this has made me question my perception of my relationships and I ended up deciding to just move on because in the end, it's THEIR issue, their choices, their lives that got in the way I guess, and you cannot control the way people react, or expect anything from anyone, ever, like I had ANY control over this!
I know people that you never ask how they are because they'll go on about their ear, their shoulder and every freakin' minor health issue in the big scheme of things for 20 minutes and always have a worse case scenario story, or have to top whatever you may have going on. I NEVER wanted to be that person and made a very conscious effort over the years not to be, and with this nonsense especially, to be sure to ask about them and their lives and not go on about cancer, besides, you get so sick of talking about cancer.....but then there are those that you don't see very often and you have to explain where your hair went, or where you've been.
You make time for a friend, even a little time, especially when they are in the hospital and or faced with a catastrophic illness. Little things like stopping by with coffee or getting out of the house go a long way and certainly help you forget at least for a moment that this nonsense that you have NO control over and has taken over your life is present.
So that's been my last 9 or so months. I had to go back to my gyn last week, where this all began. She hugged me as I haven't seen her since all this started....now we'll see what 2014 will bring, I can't imagine it could be much worse, but I'm knocking on wood for that. As I've said all along, I don't have time for this nonsense, but you have no choice. You have to make time, you have to take it easy (I deal by going to bed by 8 pm most nights). I'm not the type to sit home and mope about it, although some days I'm just so exhausted and/or sick that I'm forced to, there's nothing I did to 'deserve' this, or that I can question myself on (did I stand too close to the microwave? It's Monsanto and their GMO's fault (I really believe that's part of it....don't get me started on our food supply being poisoned!)), should have done, shouldn't have done......I go to who they told me to, when they told me to (for the most part....there were times when I couldn't and then they found out I was still working, they thought I was crazy, in fact they assume you are not working through this). I heard one story from my radiation people that patients come in and need TWO treatments, and not even for cancer, and are asking to get 'written' out of work, I didn't ask until visit 30 and that was just because I was so burned I couldn't stand clothing, the seat belt, etc.
Those of you that have distracted me, old and new friends, online and real life, I can never thank or repay you for your kindness. Thank you to those of you who have been incredibly kind and supportive this year, to me and my family, you are truly the best friends I could ever ask for and I will never forget the little and big things that you did for me and with me. Happy New Year.
Friday, May 18, 2012
karma (chameleon?)
This whole few weeks and the Karma, it's gotten to the point where it's more than 1 thing. I've always believed in Karma, if you're (basically) a good/kind person, others will be the same to you (well most, there's always that one or two). And if you're a jerk, eventually it will come back to bite you.
Take my uncle (please! LOL, sorry). He was a slum landlord. My Aunt (my dad's sister) and he were in the news all the time for lead paint laden homes, etc.. My parents had died by the time I was 20. My Grandfather (widowed when I was maybe 22) was a farmer, but he saved his money, he owned a repair/gas station on a very busy street, that because the main shopping artery once 95 went though (and 95 cut into his farmland, so he got paid for that) eventually he gave up the 'split' part of his farm to retail and made a bunch off that. You'd never know it, he lived simply and farmed.
When he passed away, it was a couple of days before Christmas. He ALWAYS had a $500 bill for EACH of the great grandchildren (I think I was the only one with kids at the time, and that was only 2) to put away for college, before great grandchildren, it was the grandchildren (me, my brother, my 3 cousins). I know he had the bills because I saw them in the cards when I stopped in the day before he died. And not that I cared about me not getting the money, wasn't that at all, it was the weasal-y way it just went missing.
My uncle/aunt the slumlords, had what my Grandfather used to call, a big fancy house and a big fancy dog in a big fancy neighbourhood. He also had the BMWs, etc. As I said, my grandfather lived very simply (I actually lived with him for a few months between selling/buying a home, and I used the money that he had saved for me as the down payment, he was very proud of that).
Now as my dad had died 12 years or so earlier, it was only my aunt. Turns out my grandfather had never fixed his will to go further than his kids. So it went my grandmother (deceased) got everything, if she was gone, my dad (deceased) and my aunt. So my aunt got his house (on said main road still), with an acre of land, and everything he owned.
She asked me if I wanted anything. I said I'd have liked his 15 year old blue station wagon volvo. It was his car, he used to take all 5 (and I'm the oldest, other than my brother a year younger, 3 years apart each) of us out for a day in the summer. My mother called him a saint. He'd take us to the railroad museum or the big farm fair or some historically accurate living museum. He'd give us an envelope of money to spend on our own and if you didn't have enough left for dinner, you were outta luck. And we always road in the back of the station wagon and threw stuff out the window, you know those big ass ones from the 70's with the rear facing back seat. It was a great time.
She said no.
She offered me the Flintstones jelly glasses.
I essentially had nothing left from him.
So back to Karma. He was worth a lot of money. They took it everything, sold his house, his car, everything.... all of a sudden, they're doing all this work on their house. Imported 1" thick ceramic tile for the kitchen that he had to LOWER the entire floor for it to fit and then extra support it for the weight. Turns out, my uncle had gotten him to remortgage his home so he could take his money.
Several years later, my uncle lost his house, had to file for bankruptcy, got divorced (although I hear they are back together, they're in their 80s now). 2 of his kids no longer speak to him.
Karma, as they say, can be a bitch.
Back to this last month. So I took my child's friend in. It's not courageous or generous or any other 'ous' word, it was just the right thing to do. No money involved (although there is a little bit now, but I'm going to put it in an account for her so she'll have something next year when she needs to get an apartment (goals from the program she's in). Just a kid who needed some help. I collect homeless animals as well as a lot of you know.
Tonight there is a 'prom' at the local ARC. My child was not invited to the school prom (which I heard sucked anyway!) as I had hoped one of the guys that plays on her basketball game would do. This is all the kids with special needs prom. My new child said she wanted to go (she's not special needs) but since she's changed schools, she wasn't asked either, I guess I could have sent them both, but it was really late to get getting tickets by the time she came here. The new child literally left her home with the clothes on her back and though she came with A dress, it's not A prom dress.
So first I have to email the center and ask if she can come, it was $15 to go and included my child and her staff person (my treatment is today so I can't drive or get there). He said send her. Now this is the first year for this event, and though I have an overall issue with it being NON INCLUSIVE, it's still good for this young people who would not otherwise be invited to their own HS proms. The news had gotten a hold of it and in came donations of food, dresses, jewelry, you name it. My child had gotten a dress with her worker a month ago. My new child, I said go into the closet, we have a lot of dresses and we'll find you something. The center is telling me they want NO MONEY for her to go and told me to send her over because they still had dresses there for free that she could pick from (donated from the local bridal shop). Before I had gotten the 2nd email that he said she could get a dress, I had stopped to get my allergy shot. The nurse there also has had many foster children and since I'm there every freakin' week for an hour, we have time to talk. So I'm telling her about the whole prom thing and she said she has a closet full of dressy dresses that she got when a bridal store went out of business that she's never worn and was about to give away because she doesn't go to places like that.
Karma.
I said no that's okay, you're working. I get out at noon. Well you don't live near here. I don't care you're taking the dresses.
She came over around 2 with 3 beautiful black dresses and 2 matching lilac obviously bridemaid dresses. She left all 3 of the black ones here (new child put on a fashion show for us).
On top of that, new child has severe allergies. She had a doc appointment at the clinic (because she has crappy health insurance) that sucked to say the least. The doc wasn't interested in anything except throwing meds at her, lecturing her on being independent, and couldn't get her out the door fast enough. She also screwed up her prescriptions. I wanted her to get a test for iron because she's always tired. She gave her pills for insomnia.
I asked my allergist's office last week (the girls in the front) if they took her health insurance, they said no.
I saw my allergist in the hall today and he always asks after my child (12 sets of tubes in 13 years, he loves her!) and I mentioned the new one and I needed to find an allergist that takes her crappy health insurance. He said bring her in, just tell the girls up front he said it was fine. He said he always wanted to meet someone from Ghana.
This child has also not seen a dentist in years. Her crappy insurance does cover it, but only at this really bad clinic (and they're about to cut that benefit, I'm on the state Medicaid committee, part of the issue is RI Medicaid only allows $12.50 per dental visit and exactly which dentist will take $12.50, so they are going to drop it totally July 1st if that passes). I called my dentist. I've been going to him for only a couple of years (mine retired and the person he sold it to was always 'looking for work' on everyone's teeth because we have good insurance, no thanks). I spoke to the receptionist and explained the situation and she told me to bring her in and made the appointment. Her daughter in another state takes in kids. They don't take her insurance, but she told me not to worry about it.
And one more, and all of these have happened (other than the uncle story) in the past week, plus as you all know there are many others (fogies??? furbies????).
I have sterling silver moon bracelet that I wear ALL THE TIME. I got it from Kirk's Folly (www.kirksfolly.com) as I worked for them for awhile and they are from the village. I also did my internship for my MA there (database programming). They used to have this huge sale every year (they mainly sell on QVC now, and online) and I bought it easily 10-15 years ago. I buy my flowers/veggie plants at this greenhouse near me. To say the lady that runs is is bitchy is an understatement. She's always in a bad mood, but I'm used to her, that's why she grows plants!!! Her stuff always grows, she can get me weird stuff (like moon flowers) and I'd rather get stuff from a local business than Home Depot, Lowe's or Wallyworld.
Every time I go in there she asks about the sale and my bracelet, she's always loved it. Over the years, I've asked them (the Kirk's) if they have any more, mine was a sample (at the sale, they sell a lot of their samples and leftovers and extra QVC stuff).
Last November, they had one finally for the first time in 5 years and Helen (Kirk) had emailed me asking if I wanted to work at it, and I couldn't. But I did go and when she saw me, she said I have something for you. And she brought out a moon bracelet! I think it was like $19. I bought it in November and I did have the greenhouse lady in mind, but then I got thinking about mine and what if it broke or something happened to it (and the greenhouse wasn't open, it just opened the week before Mother's day).
Anyway, I decided to give it to her and went over there (and I was in a HUGE rush) to drop it off to her.
It wouldn't fit over her hand. She has much thicker wrists than I do. I felt really bad, but then I took mine off (mine's not round because I wear it all the time, it's more oval) and that went on. She literally started crying and hugging me. But I had to run, so I told her I'd be in later to get my plants.
I stopped in yesterday. Loaded up 3 trays (usual amount) with my flowers and plants and went to check out. She had the bracelet on. She rang it up and said $16. I said no way, that's now why I got you that bracelet, she wouldn't hear of it. I told her I bought because I was tired of listening to her whine every time I see her! It was pretty funny. I gave her a $20 to pay and told her to keep it, nope she gave me the $4 back and wouldn't take any more $$. And had her granddaughter take all my stuff out to the car and started waiting on someone else.
Take my uncle (please! LOL, sorry). He was a slum landlord. My Aunt (my dad's sister) and he were in the news all the time for lead paint laden homes, etc.. My parents had died by the time I was 20. My Grandfather (widowed when I was maybe 22) was a farmer, but he saved his money, he owned a repair/gas station on a very busy street, that because the main shopping artery once 95 went though (and 95 cut into his farmland, so he got paid for that) eventually he gave up the 'split' part of his farm to retail and made a bunch off that. You'd never know it, he lived simply and farmed.
When he passed away, it was a couple of days before Christmas. He ALWAYS had a $500 bill for EACH of the great grandchildren (I think I was the only one with kids at the time, and that was only 2) to put away for college, before great grandchildren, it was the grandchildren (me, my brother, my 3 cousins). I know he had the bills because I saw them in the cards when I stopped in the day before he died. And not that I cared about me not getting the money, wasn't that at all, it was the weasal-y way it just went missing.
My uncle/aunt the slumlords, had what my Grandfather used to call, a big fancy house and a big fancy dog in a big fancy neighbourhood. He also had the BMWs, etc. As I said, my grandfather lived very simply (I actually lived with him for a few months between selling/buying a home, and I used the money that he had saved for me as the down payment, he was very proud of that).
Now as my dad had died 12 years or so earlier, it was only my aunt. Turns out my grandfather had never fixed his will to go further than his kids. So it went my grandmother (deceased) got everything, if she was gone, my dad (deceased) and my aunt. So my aunt got his house (on said main road still), with an acre of land, and everything he owned.
She asked me if I wanted anything. I said I'd have liked his 15 year old blue station wagon volvo. It was his car, he used to take all 5 (and I'm the oldest, other than my brother a year younger, 3 years apart each) of us out for a day in the summer. My mother called him a saint. He'd take us to the railroad museum or the big farm fair or some historically accurate living museum. He'd give us an envelope of money to spend on our own and if you didn't have enough left for dinner, you were outta luck. And we always road in the back of the station wagon and threw stuff out the window, you know those big ass ones from the 70's with the rear facing back seat. It was a great time.
She said no.
She offered me the Flintstones jelly glasses.
I essentially had nothing left from him.
So back to Karma. He was worth a lot of money. They took it everything, sold his house, his car, everything.... all of a sudden, they're doing all this work on their house. Imported 1" thick ceramic tile for the kitchen that he had to LOWER the entire floor for it to fit and then extra support it for the weight. Turns out, my uncle had gotten him to remortgage his home so he could take his money.
Several years later, my uncle lost his house, had to file for bankruptcy, got divorced (although I hear they are back together, they're in their 80s now). 2 of his kids no longer speak to him.
Karma, as they say, can be a bitch.
Back to this last month. So I took my child's friend in. It's not courageous or generous or any other 'ous' word, it was just the right thing to do. No money involved (although there is a little bit now, but I'm going to put it in an account for her so she'll have something next year when she needs to get an apartment (goals from the program she's in). Just a kid who needed some help. I collect homeless animals as well as a lot of you know.
Tonight there is a 'prom' at the local ARC. My child was not invited to the school prom (which I heard sucked anyway!) as I had hoped one of the guys that plays on her basketball game would do. This is all the kids with special needs prom. My new child said she wanted to go (she's not special needs) but since she's changed schools, she wasn't asked either, I guess I could have sent them both, but it was really late to get getting tickets by the time she came here. The new child literally left her home with the clothes on her back and though she came with A dress, it's not A prom dress.
So first I have to email the center and ask if she can come, it was $15 to go and included my child and her staff person (my treatment is today so I can't drive or get there). He said send her. Now this is the first year for this event, and though I have an overall issue with it being NON INCLUSIVE, it's still good for this young people who would not otherwise be invited to their own HS proms. The news had gotten a hold of it and in came donations of food, dresses, jewelry, you name it. My child had gotten a dress with her worker a month ago. My new child, I said go into the closet, we have a lot of dresses and we'll find you something. The center is telling me they want NO MONEY for her to go and told me to send her over because they still had dresses there for free that she could pick from (donated from the local bridal shop). Before I had gotten the 2nd email that he said she could get a dress, I had stopped to get my allergy shot. The nurse there also has had many foster children and since I'm there every freakin' week for an hour, we have time to talk. So I'm telling her about the whole prom thing and she said she has a closet full of dressy dresses that she got when a bridal store went out of business that she's never worn and was about to give away because she doesn't go to places like that.
Karma.
I said no that's okay, you're working. I get out at noon. Well you don't live near here. I don't care you're taking the dresses.
She came over around 2 with 3 beautiful black dresses and 2 matching lilac obviously bridemaid dresses. She left all 3 of the black ones here (new child put on a fashion show for us).
On top of that, new child has severe allergies. She had a doc appointment at the clinic (because she has crappy health insurance) that sucked to say the least. The doc wasn't interested in anything except throwing meds at her, lecturing her on being independent, and couldn't get her out the door fast enough. She also screwed up her prescriptions. I wanted her to get a test for iron because she's always tired. She gave her pills for insomnia.
I asked my allergist's office last week (the girls in the front) if they took her health insurance, they said no.
I saw my allergist in the hall today and he always asks after my child (12 sets of tubes in 13 years, he loves her!) and I mentioned the new one and I needed to find an allergist that takes her crappy health insurance. He said bring her in, just tell the girls up front he said it was fine. He said he always wanted to meet someone from Ghana.
This child has also not seen a dentist in years. Her crappy insurance does cover it, but only at this really bad clinic (and they're about to cut that benefit, I'm on the state Medicaid committee, part of the issue is RI Medicaid only allows $12.50 per dental visit and exactly which dentist will take $12.50, so they are going to drop it totally July 1st if that passes). I called my dentist. I've been going to him for only a couple of years (mine retired and the person he sold it to was always 'looking for work' on everyone's teeth because we have good insurance, no thanks). I spoke to the receptionist and explained the situation and she told me to bring her in and made the appointment. Her daughter in another state takes in kids. They don't take her insurance, but she told me not to worry about it.
And one more, and all of these have happened (other than the uncle story) in the past week, plus as you all know there are many others (fogies??? furbies????).
I have sterling silver moon bracelet that I wear ALL THE TIME. I got it from Kirk's Folly (www.kirksfolly.com) as I worked for them for awhile and they are from the village. I also did my internship for my MA there (database programming). They used to have this huge sale every year (they mainly sell on QVC now, and online) and I bought it easily 10-15 years ago. I buy my flowers/veggie plants at this greenhouse near me. To say the lady that runs is is bitchy is an understatement. She's always in a bad mood, but I'm used to her, that's why she grows plants!!! Her stuff always grows, she can get me weird stuff (like moon flowers) and I'd rather get stuff from a local business than Home Depot, Lowe's or Wallyworld.
Every time I go in there she asks about the sale and my bracelet, she's always loved it. Over the years, I've asked them (the Kirk's) if they have any more, mine was a sample (at the sale, they sell a lot of their samples and leftovers and extra QVC stuff).
Last November, they had one finally for the first time in 5 years and Helen (Kirk) had emailed me asking if I wanted to work at it, and I couldn't. But I did go and when she saw me, she said I have something for you. And she brought out a moon bracelet! I think it was like $19. I bought it in November and I did have the greenhouse lady in mind, but then I got thinking about mine and what if it broke or something happened to it (and the greenhouse wasn't open, it just opened the week before Mother's day).
Anyway, I decided to give it to her and went over there (and I was in a HUGE rush) to drop it off to her.
It wouldn't fit over her hand. She has much thicker wrists than I do. I felt really bad, but then I took mine off (mine's not round because I wear it all the time, it's more oval) and that went on. She literally started crying and hugging me. But I had to run, so I told her I'd be in later to get my plants.
I stopped in yesterday. Loaded up 3 trays (usual amount) with my flowers and plants and went to check out. She had the bracelet on. She rang it up and said $16. I said no way, that's now why I got you that bracelet, she wouldn't hear of it. I told her I bought because I was tired of listening to her whine every time I see her! It was pretty funny. I gave her a $20 to pay and told her to keep it, nope she gave me the $4 back and wouldn't take any more $$. And had her granddaughter take all my stuff out to the car and started waiting on someone else.
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