Here is my long, sad tale, and the current issues which caused me to join here (for some much needed support & understanding as well as a place to vent/cry/laugh about
the tragedies we all endure).
So, pull up a chair, get out your hanky (for both both the tears and the laughs) ha ha.
Ok, no more putting off starting.While I had so many issues starting since I was 2, but I'm going to start much more recently than that, though over time you may hear it all, lol! When I was 35/36, possibly sooner, but that's when it became undeniable, I became extremely tired, lost my appetite, and my chronic pain issues got worse.
At the time I was working full time, going to school and helping my husband with getting our full service garage up & going... as well as helping raise his 3 kids, supporting his ex, and our 3 dogs, 1 parrot, salt water tank and my beloved cat. I promise all this background matters, to me, anyway..
I thought all that was why. Wouldn't anyone be exhausted?? Now, kids, close your ears if you get squeamish. My periods had gotten so long and heavy that it was more noticeable when I wasn't suffering than when I was. I was also developing issues at the other end. Long story a little shorter, I finally went to (what I thought were) the right drs... Thus begins the next chapter.
I was tragically mismanaged and malpractice was performed upon me. My gyn. (not my regular, as I had just moved to NH from MA to our lovely 5 acres on Lake Winni) He felt (over) qualified and ran the usual tests, performed the usual exams and despite "abnormal glandular changes, strongly suggestive of neoplasia" decided there was minor cause for follow-up. But never changed me over to oncology. Onc.Gyns are stratospheres higher qualified than regular gyns for cancer, fyi. Long story shorter (again), he operated via
open explorative, looked right at my 2, count 'em TWO metastasized, frank (obvious) cancers and announced to my family that I was a liar and drama queen and there was nothing wrong with me!!
Well, by then I'd learned the value of researching my own labs, etc, and learned I should have been kicked up to a Onc./Gyn, meanwhile my family, now convinced I'm malingering, has withdrawn support in some misguided attempt to "tough-love" me out of this situation and "mindset"... (that sucked)
I basically self-referred myself to oncolgy. At Boston. Where they'd treated me for cervical dysplasia 10 yrs previously. They took one look at my labs, pathology, etc and scheduled immediate surgery. My family came back. I was found to have Cervical Adenocarcinoma stage T4N0MX (2b/c) and Endometrial Adenocarcinoma same stage, with drop mets, also, as an added bonus, during my workup I was discovered to also have primary Mucinoid Colon Adenocarcinoma, also stage IIb mets to spleen & other local organs (it was actually almost a joke with me & mine about
that.. my stage of disease (s) )
No sooner did I finish surgery (another
open abdominal, as they weren't sure how much & how far it had spread) and radiation (my form was extremely high-risk for recurring) than I was back in surgery and yet another
open abdominal surgery this one for the colon cancer.. this one vertical...
Following this surgery I was put on chemo (FOLFOX). The best part about
all this cancer? For the first time my pain was mostly controlled, except for surgical pain, because face it, unless you're unconscious you're going to feel people having removed 2/3 of your internal organs! In this last operation what they do is take out your organs & put them on a table next to you, then when done, put 'em back in!
During my chemo, my husband passed suddenly at 1 week before his 46th birthday. I was in that temporary apt. in MA that we'd gotten me while in care & chemo...
Now, 6 1/2 years later, my cancers are in remission, cured, and remission, in the order listed prev. I am stuck in that temp apt, lost palliative pain care due to policy (if cancer's not active, you're not in palliative) That sucked.
My pain is no better, is in fact worse, and so is my care. Sometimes, due in part to my circumstances and in part to my pain, I almost wish my cancer would come back just for proper pain management... how sick/sad is that? Oh, and the banks took that home on the lake, the business was taken over by partner who kept my husband's ($300k worth) tools, the kids turned on me and my dogs were stolen by them, the cat died, and they kept my parrot, too. Also, my family returned (the very day chemo ended) to trying "tough love" as a coping mechanism. Which really just means they just don't seem to care and definitely don't help. Or maybe they think this b.s. works for grieving, of all kinds (grieving for my husband, health and life). So, now it's me, alone with the 4 cats I rescued (well, I rescued 1 who turned out to be pregnant.. ) I'm about
to be 46.
In the last almost 7 years I continued to be diagnosed with conditions and diseases, but I can't find quality care. Nor can I get continuing pain management (that's in part 2)
End of crazy-long part 1. If you can stomache any more, tune in for the last bit which describes the tragedies of the so-called pain management care that led me here (its a shorter story). That will have to wait, though, as my carpal tunnel has made it unbearable to continue. And I have the equivalent of no meds (for me). Not that that is a new issue, exactly, lately.
Thanks for sticking with me so far. It feels *SO* good just to get it down (and out). Thank you
I hope you all have a better day than your last best day!
~JanuaryGirl67 (aka Kirsten)
Endometrial Adenocarcinoma, Stage IIb Dec. '06 (drop mets to cervix)
Cervical Adenocarcinoma, Stage IIb/c Dec. '06 (with background of sarcoma and a "cancer garden" their term, not mine)
Colliod Colon Adenocarcinoma, Stage IIb Aug. '07 (mets to local organs)
Severe Carpal Tunnel; Right wrist, 95%, Left wrist 76% '03
Complex Regional Pain disorder '07
Raynauds '02Peripheral Neuropathy '13 (cause under investigation: ruled out vitamin deficiency, and maybe diabetes??)
Moderate to Severe Degenerative Arthritis (OA); '05 (all small joints, most large joints & spine)
Bone on bone w/spurring; right knee '02 L. knee also, now
Lesion @ T6; unknown etiology (currently, present since at least '03)
Peripheral Edema (unknown etiology at present)