Ok, time to tell the tale...

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etc, and learned I should have been kicked up to a Onc./Gyn, meanwhile my family, now convinced I'm malingering, has withdrawn support in some misguided attempt to "tough-love" me out of this situation and "mindset"...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)

~~♥~~♥~~♥~~
DX:
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)
Fibromyalgia '02
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)

I'm so sorry that you've been through so much. My heart breaks for you after reading your story. I agree with Merrida... Keep those kitties close. I have a dog that helps me on my worse days and I am guessing your cats comfort you as well. I hope you get a break in your luck soon. That's so much to deal with. :-(

Wow. I say, wow again. That is one of the most incredible stories I have heard in a long ,long time, and yes, I believe every word of it. And I thought I had issues with my 4 cancer bouts and my ongoing advanced prostate cancer, CP, and CF.

My hat is off to you though, you are one heck of a survivor. To have been through all of that, and live to tell the story. You are one strong woman.

I can only wish you the best from this point on, and hope things turn better for you. And we are absolutely here for you, whatever you need in the way of support and care.

For curiosity, where are you on Lake Winni? I lived for years on the lake in Wolfeboro, NH, and later Tamworth, NH. Such beautiful country, I miss it so much, even 24 years later after moving to SC.

Thanks for sharing your totally amazing and heart wrenching story. What makes HW CP so different from some of the other forums here, there are many people that have endured horrific things in their lives, and that's probably the attraction here between members, and the natural empathy that is shown to one another.

My best to you,

David

Oh, wow, you 'guys' (I use the term loosely, no offense intended!) I am overwhelmed by the warm compassion you've shown me here. Really.
I hope you'll understand if I reply to everyone in one post, everything I do to save my wrists/hands is a good thing! In order:

Merrida;
I think you're doing the right thing in keeping the place in MA 'just in case' for as long as is feasible. My little apt is woefully lacking as we had to get it in a hurry, and now I'm stuck in it! Wish we'd had the foresight! My mom is in Methuen, so I wanted a place near-ish to her and close-ish to Boston, but not in the city, so I ended up in Haverhill, in a historic old building. Very pretty, but not really suitable to me long term... or so I felt.. I digress. My mother and I used to be very close, but she just doesn't turn out to have much stamina for the long-term as it turns out, and she becomes angry and then blames you when her energy runs out before your need (or illness or situation). I really don't know how else to say it. Everything is just "something to get through" and she approaches it with just that attitude. There's more to it, but this works for now.
I'm sorry about your horses and parrot! Mine was a Timneh African Grey, he was SO smart & loving.. hurts to remember him, still. My girls, the dogs were 2 Golden Retrievers and a Shepherd-Chow cross, all rescues but one. Hurts to remember them, too.
My cats (my kids!) definitely keep me both entertained and occupied! They also give me love & allow me (in varying degrees) to love them back. As to the health risks, I actually had Cat Scratch Fever when I was 20! Horrible, that. Ugh! Thank you so much for your kind words, they mean a lot to me.

Qt_Pye;
I love your screen name! Thanks so much for your response. As I said to Merrida, I do love my "kids", I wish they were all the same sex so I could just say "my girls", like I used to for my dogs.. but I have a male and his harem of three! lol
In response to your signature, I have to say you've made me smile just talking about them, so keep up the wonderful work! It's a worthy goal

Lynn,
You and I hold exactly the same view regarding love, for me, too I either love or I don't, if I love someone, nothing could keep me from doing whatever I can. I don't believe in "conditional" love.
As to being glad I joined, you're right about that! I am already. What I said above is true, I really am overwhelmed with the kindness and compassion shown this posting. Thanks for your post

David,
Hi, I knew some others here are also dealing with cancer, but I hadn't know there others with multiple cases, also. I guess if I went to the cancer forums, I might see more of that, but I'm really sad to hear about you. Maybe sometime you could share your story with me, if you feel comfortable for that.. maybe down the road? Do you have Lynch Syndrome, too? That's what causes all my cancer (past, present and potentially future). It's funny (to me) that you say you believe me, cuz in my little world (before it shrank) we joked about if I ever wrote my entire life story, and published it, I'd have to put it in fiction anyway, cuz no one would believe it! haha

We lived in Ctr. Tuftonboro at the end of our dirt road was the Post office/General store...and our garage right next to that... Wow, what a small world! I loved Tamworth, too, used to go up all the time to the artisan shops when I lived in T'boro. Ahh, the memories

Loretta,
You are absolutely right, it is a very warm group of people here. I guess the "regular" world has so many sharp edges for us that we learn to be soft.. with ourselves and others. Strong, but soft. It an unintended (but wonderful) consequence of our situations. Like diamonds, all of us

Thank you all so very much for all your kind words. I look forward to knowing you all better as time goes on. If ever I can help anyone, to listen, to research something, to cry with, be strong for, you name it, I can be a pretty good friend.
~~Kirsten
P.s.~if I missed anyone who responded, please bear with me, when I started this reply it was current with responses, but it has taken me literally hours (!! ) to type all this! Now my tablet needs to be charged and my elbow is screaming! Night all!