We have no right to ask when sorrow comes, “Why did this happen to me?” unless we ask the same question for every moment of happiness that comes our way. ~Author Unknown
How do I write this post without it sounding like a sob story? I certainly don’t want to sound dramatic but at this moment, this very moment I feel as if I’m going to lose it. Completely lose it. I’m about five seconds from having a nervous breakdown. Thank God it only takes about 30 minutes for the Xanax to kick in.
Yes, I am taking tranquillizers. You would too if you were me, I’m pretty sure of it and certainly if after the visit I had with my doctor on Friday. It’s going to take a heap of healing yoga AND tranquillizers for me to remain calm. I don’t believe that I have that much inner sanity left. Perhaps I do, but at this moment I’m finding it difficult to channel it.
My sanity has left the building. Should you see it, please send it home.
(Dude is testing the remain .5 ounces of it by incessantly banging pots and pans in the kitchen…please tell him to stop before I go ballistic…thanksomuch.)
Breath in. Breath out. Breath in. Breath out.
O.K.
I realize I probably sound like a deranged lunatic but bear with me because this is just outrageous and unbelievable…at least to me.
Something I try NOT to do in relation to my illness is get all technical and medical because it’s not necessary. I get the information from my doctor and educate myself thoroughly so that I’m on top of my game and so that I understand what they are saying to me. I do LOTS of research. It’s all part of MY game plan in this fight.
So far, so good.
Everything was pretty cut and dry up until a couple of weeks ago when the doctor told me I had a rare form of stomach cancer. I felt relieved that there was an answer to the mystery puzzle we were trying to solve and that I finally fit into some kind of cancer “category”.
I also felt like I had a new color, a new ribbon and a new flag…
For four years I’ve had a teal ribbon awareness flag in my garden in support of ovarian cancer awareness. I’ve spoken to at least 100 women, if not more about ovarian cancer. It’s been my flag to fly. Two weeks ago I took down that teal flag and replaced it with a periwinkle ribbon awareness flag…periwinkle, the color of stomach cancer. My new flag to fly.
Then I went to see the doctor on Friday and he had the written pathologists final report.
This is where I break my rule of being all technical and medical…just this one time and only this one time,
“The overall impression is this is a cyst papillary adenocarcinoma of unknown primary that could very well represent a primary urachal carcinoma or a carcinoma derived from other embryonic rests in the region. It is the opinion of this pathologist that the two processes, though they may be related in some distant way via propensity represent 2 different primary processes.”
Edit: I also have a CEA marker that measured 57.8 and a C125 marker that measured 318. The CEA marker would indicate that I have colon or gastric cancer. The CA125 marker would indicate that I have a reproductive cancer. The two together indicate that I have something rare in correlation with the pathologist’s report.
So, what does that mean? It means that I have a very, very, very, very rare cancer that no one has ever seen and no one knows how to treat. And there is a reason I’ve put all that information in this post. I’m hoping by some freak chance a rockstar oncologist or rockstar oncology researcher is going to search the Internet looking for THIS CANCER because they have the answers I need, the cure I need.
In the meantime I’m searching for a rockstar oncologist. I’m hoping that I find him/her in New York City in two weeks. If not in NYC, then maybe in Boston. And GOD, please tell me there is some foundation out there that helps people like me, who have been laid off, denied unemployment and cannot collect Social Security…with funding to travel.
I’ve never asked “why me?” but c’mon. Why? How do I make sense of this? How do I get the doctors to stop saying, “I’m sorry, I’m so very sorry.” How do I get them NOT to give up on me?
Am I suppossed to come to terms with the fact that I’m going to die? Is that what I’m suppossed to do now? I can’t do that. I cannot walk around with my heart in my throat when I look at my two children knowing the clock is ticking and that every moment I have with them is a “last moment” because that’s where my heart is right now.
Fuck me, I don’t even have a flag anymore. Exactly what am I suppossed to do with the new flag in my garden now?
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So, you are going to see an oncologist in New York in 2 weeks?
Did you reapply for Social Security? I would think the experience with the unemployment would be to your benefit, now.
You are not giving up. You have too many appointments to make! Sorry if that was a bad thing to say.
I know! you asked what to do with the flag and how to make the doctors stop saying I’m sorry; take that flag and bash them on the head.
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I cannot even PRETEND to know what to say. Just know we’re all behind you and we will be with you through this.
that girls last blog post..Win a Bounce House
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fuck it – we will just have to make a new flag! someone will see this and help…i just know it.
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You have probably come across these resources in your research, but I am throwing them out there just in case. NPATH – for travel assistance, NORD (http://www.rarediseases.org/) Nat’l Org of Rare Diseases, Patient Advocate Foundation which might be able to help with SSDI, and CancerCare which might have some travel/childcare money available. I wish it was easier for you, but I do hope that rockstar finds you.
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Hm— fight that unemployment shit to all hell. You fulfilled your obligations to your temp agency. There are some nice Texas UI cases to be found on Google. Hope you can find some on your state also.
Hang in there– you will figure out a way.
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Well, for one, I wouldn’t go about broadcasting that you have no flag… Britain will claim you: http://www.youtube.com/watch?v=uEx5G-GOS1k
So, bloody make one up… quickly!
Couldn’t you write to Oprah or something? I’m not trying to be a smart ass I’m serious. Doesn’t she just help people out sometimes?
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Hi, I found your blog completely by accident. You and your family are in my thoughts and prayers.
I did a little bit of digging to see about that foundation you mentioned. I haven’t found one yet, but, I did find Corporate Angel Network (http://www.corpangelnetwork.org/), a service that helps cancer patients and their families get flights on otherwise empty corporate jets. I’m not sure how much this would help you, but, it’s something. I’m going to keep digging.
Please let me know if I can do anything else to help.
Katys last blog post..Secret Pal Question #2
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I know that this is a pretty stupid question but bear with me …
You’ve already plugged in specific words of that paragraph into Google and searched on your own, correct?
Have you logged onto: http://jco.ascopubs.org/
This one is my favorite because you can check off specific journals to research through all at the same time. For example, I typed in primary urachal carcinoma for the search criteria, scrolled through the list of journals and research began the search. I was amazed to see how many books had referenced that phrase. It’s a bit of work to figure out which words of the paragraph you quoted but if you do different combinations of words (without creating a whole new disease in the process) you can find several references specifically related to the search criteria. And, try selecting “all” words or “phrase” on the same search criteria because if it doesn’t find it under “phrase” it certainly will under “all.” But always go for the phrases first because otherwise you’ll come up with a multitude of journals to search that are only highlighting a word or two of the actual phrase. It’s something that you have to play with but the end results are fine.
Here are a couple of other sites for you to research (if you haven’t already):
jco.ascopubs.org/
http://opp.sagepub.com/
http://www.cancerlinksusa.com/professional/journal.htm/
Also, from your house to NY and Boston, how much would a plane ticket for one cost?
Once again, I have nothing of any great importance that will change how you feel or don’t feel. But you are in my heart every day. Without fail. I know it’s not enough, but it’s all I’ve got.
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Lisa,
I’m not 100 per cent sure but doesn’t that say that you have two types of cancer — that may have been related but they aren’t sure how?
I wish you could get the help you need. I really do. I’m going to drop an email to one of our researchers at work (here in Canada), see if they know anyone in the U.S. that can help. No promises. But it might be a lead.
Nats last blog post..Every time we say goodbye…
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I was thinking the same thing Nat was, that it meant you had two different kinds of cancer.
Hug those babies for me Lisa. Hold them so tight. It doesn’t mean you’re giving up – just that you’re holding on.
XOXOX with a lump in my throat for you.
Miss Britts last blog post..I Remember The Puppy Monster
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Fly them all!! They mean so much to so many. And keep on fighting. See the MD’s at Sloan-Kettering, the Mayo Clinic, Cleveland clinic and anywhere else until someone comes up with a treatment course. Lots of Love.
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I guess I am sort of speechless. Write to your congressmen, Oprah, all the big cancer research hospitals…I don’t blame you for needing that Xanax…
(((hugs)))
Christines last blog post..The last day of third grade!
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Lisa, Sadly, I don’t know any rockstar oncologists, but I do have some knowledge of SSDI and it is imperative that you apply (or reapply) as soon as humanly possible. Use the buzzword “TERMINAL” (repeatedly, if necessary) so that your claim is tagged as “TERI.” Regulations require that “TERI” claims receive special handling and expedited determinations. You can’t get avoid the waiting period, but you can bypass a lot of the usual red tape and other BS so that you receive a check on the first date you are eligible.
You know, maybe we should ALL write to Oprah on your behalf. If someone has details and wants to start a “Write to Oprah for Lisa” campaign, I will be among the first to send out my letter.
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I emailed you with some info. I hope it might help.
And I agree with Kim, we ALL should write Oprah and tell her about Lisa and give her the link to her blog. Maybe hundreds of letters will get noticed. It’s worth a shot, anyway.
Off to write my letter.
Musings last blog post..Self-deprecating minds want to know
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It makes me angry that I read this post and see the doctors saying “I’m so sorry,” but really – that isn’t fucking good enough. I wish I could get you help here. Is there a way? There must be a way.
Karen Sugarpantss last blog post..Internet, I’ll Miss You (sortof)
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I read and reread the pathologist report – it looks to me as well that you have two cancers that may or may not be related.
(not that that is much help)
What about Los Angeles? City of Hope, USC & UCLA. (not sure where you are at right now)
Sending hugs…
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annie, I am going to Sloane-Kettering! They want to see me after go through this next round of chemo and have a CT scan. Everyone involved wants to see if my cancer is responding to treatment so far, including Sloane-Kettering.
They have all this information though…that’s a start.
I have NOT applied for SS yet but I’m thinking it’s REALLY the time to do it.
As far as unemployment is concerned, I’m just waiting for an examiner to review the case and to contact me. I’ve got all my ducks in a row and I’m ready to go to court. I WILL WIN.
I’m even filing a case against the temp agency for discrimination according to the ADA guidelines. I’m informing them tomorrow.
I don’t want to bash my doctor over the head with my flag because he is the FIRST doctor to recognize that I have fallen through the cracks and the first doctor to say, “It’s NOT going to happen again!!!” He is extremely through and so is his staff. They have completely impressed me beyond my wildest dreams.
Seriously. Can you beieve that one?
That Girl, Thank you…knowing that is more than enough.
ocb, Dude told me that I’m now a woman of many flags.
While I’m searching maybe someone else is searching and our paths will cross. Who knows.
I refuse to give up.
Suzy, Those are resources that I did NOT know of previously so THANK YOU!!!!
I figure it takes a rockstar to find a rockstar. I’m a rockstar in my own mind, that counts doesn’t it?
O.K. a self-proclaimed rockstar?
O.K. it’s my fantasy to be a rockstar when I play Guitar Hero III.
That counts, right?
Connie, You can bet that I’m embroiled in a fight with UC. I took Employment Law as part of my B.S.B.A degree. My concentration was HR.
Employment Law was my FAVORITE course. I am also very familiar with PA UI because I’ve previously been on the receiving end AND assisted an employer in fighting a case.
If I lose, then you will see me in the news.
Girlinthecrosswalk, That’ is AWESOME. I may post that!
I’m not sure what Oprah can do. I mean, she can’t cure cancer. If I thought she could help then I’d try to contact her. She’s got money…that would help. And isn’t what this game is all about anyway?
Katy, Thank you so much for the link! This may help us get to Boston if we need to go to Dana Farber. Thank you.
Mattie, I haven’t heard of the website you mentioned but I will look into it. Thank you very, very much for those links. You are awesome.
From our house to NYC we will take the train from Philly and then a taxi. I figure we are looking at about $300 round trip.
If we had to go to Boston? I don’t even want to look at the cost of flights. We would probably be better off driving or taking the train.
There’s a fellow blogger who I would be begging if I could sleep on her couch for the night too.
Nat, It says that I could possible have two different types of cancer mixed together and they have spread to my liver and lungs. This is very unsual. AND very difficult to treat.
Anything you try to do…that would be great. Let me know if you need more info. I can always provide you with the complete pathology report.
Miss Britt, That’s what it could be and it’s two cancers that just don’t happen together. Those type of cancer cells together are RARE and there’s no treatment for them.
I will definitely hug the girls for you…and I can never hold them tight enough…I hold onto them for dear life.
2HT’s Mom, You sound like my husband who says I am now a woman of many flags!
That’s what I plan on doing…as long as I can find the money to travel, I will go to every big cancer center in this country until I find one that can cure this. SOMEONE has to. I’m not done here yet.
I’ve got a LIST of things left to do!!!
Christine, I’m not sure what writing to all of those people will do. I guess I’m just not THERE yet. But maybe you are right. Maybe I need to start screaming from the mountaintops.
Kim, That’s good to know about SSDI.
Can you imagine if the blogging community ALL wrote to Oprah? OMG, that would get some attention.
Musing, Thanks for your email. I sent you a reply
If everyone wrote to Oprah, she might take notice!
Karen, Between the U.S.A. and Canada there HAS to be a rockstar oncologist that knows something about THIS cancer.
I have to believe that.
WE will find him/her or THEY will FIND ME.
Pam, That’s EXACTLY what the report say but when matched with the blood work the oncologists have concluded that I have a RARE cancer.
There is a CEA marker and C125 marker which both tested 15 times higher than the normal person. Those markers would tell us that I have both colon/GI cancer AND reproductive caner.
That’s a VERY RARE occurance with NO cure.
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Dear God. I don’t understand this. I get the medical stuff because I am a nurse (not an oncology one though, dammit!). It’s the reason stuff I don’t get. The first time I actually met you, you said, “It is what it is,” when I tried to be sympathetic. You amazed me then, and still do, with your courage. Still, what it is just fucking sucks. Dammit it pisses me off.
I live in Minnesota. I live about 2 hours from the Mayo clinic, so to offer to let you stay at my house wouldn’t really be helpful to you. However, if you come here, I will meet you in Rochester, we can stay there together. I will hold your hand and be an advocate for you and anything else you want me to do. Name it. I mean it. I’m there.
You have an amazing spirit and courageousness. I wish there was more I could do or say.
Shellis last blog post..Remembering Puppy Monster
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Shelli, I still stand by “it is what it is” because it’s the only way to make sense out of this. I dared to ask “WHY?” when I wrote this post and THAT is a very dangerous path to travel down.
IT IS WHAT IT IS is a much safer, much saner path.
It’s also a level of acceptance. If I don’t accept it then how can I find a way to solve this problem and that’s what this is…a problem to solve.
If I have to come to the Mayo Clinic I would LOVE for you to come see Dude and I. That would be a HUGE comfort to me. Plus it would be fantastic to see you again.
I don’t see my spirit as amazing or courageous. I see it as survivoristic. I have to live this way if I am going to survive and not allow myself to fall into a pit of depression.
I’m always one step away from that pit.
It’s the support that I get from my family, my friends and the blogging community that keeps me from that pit. THAT’S WHAT IS AMAZING!!!
So when people thing that ONLINE FRIENDSHIPS are bullshit they should really think again because the support I receive here really KEEPS ME SANE.
Now that I sound psychotic…
Your comment said volumes, trust me.
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hey lady, just throwing it out there: why would round trip train/cab to NYC be that much?
if you take the R7 from 30th St. to Trenton and pick up NJ transit to New York Penn Station it’s roughly $20 one-way (that’s on peak, adult, bought in the station, i just checked their websites). whatever you do, don’t take amtrak, they’re so damn expensive and NJ transit gets you there in the same amount of time.
i may not know a lot about cancer, but traveling on the east coast i do know.
anyway, i’ll give you a call later this afternoon when i’m finished with cleaning the bathroom … yeah, it’ll take that long! hugs!
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Sister D, Dude really wants to take Amtrack…why? I don’t know. I’ve taken NJ transit plenty of times before.
I have to figure out how to get to the hospital from Penn Station. I never, ever took a taxi in NYC. That has to be expensive.
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This is one of those times when it is a great idea not to try to muster up the courage to deal with all the shitty things that might happen. They have not happened as of now so there is no reason to try to deal with them. Instead try to do what you need to do today, one hour at a time, and then one day at a time. Don’t let the cancer terrorize you. It’s just a bullshit disease and if you let it fuck you up, it wins. If you put a smile on your face and get on with your day, then you win, no matter what happens later.
The taxi will probably be less than $20 from Penn Station. If you want me to come and meet you guys and escort you to S-K on the trains and buses I will totally do that. Mass transit will get you there, no problem. If you want to stay in the city, you know I’ve got your back.
Ninas last blog post..Breakneck
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Hi, Lisa. I’m new (found you over at Annie’s place from the comments…) but wanted to say, well, lots of things. There’s so much to say and I’m a bit overwhelmed, but I’ll try my best. First of all, I am amazed by and admire your strength and courage, qualities that will (as I’m sure you know) bring you further than someone who rests in negativity and just lying down in acceptance without questioning. I am thinking about you and praying for you, as well. Second, I “LOVE” researching and I am here for you to try to help in any way I can, just holler. I have a bit of experience in oncology, working as a medical transcriptionist for the cancer center at my local hospital (a job in which you can’t help but learn *something*), so I’m glad to use my knowledge, experience, and anything else in my power to whatever benefit to you I am able. I hope you accept my extended hand in friendship, and know that along with all of your supporters, your walk will not be in vain.
Angies last blog post..For Better or Worse
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Lisa,
The following site lists several resources for travel and/or lodging near cancer centers. Cancer Resources . When I was a nurse-case manager I used many of them to assist patients with free flights and/or lodging so that they could travel to cancer centers for treatment.
The American Cancer Society offers lodging assistance Hope Lodge . They are nice places to stay and almost all are located near major treatment centers.
If I can be of any further assistance, please e-mail me: lspryszak at comcast dot net
Mrs RWs last blog post..This is what a Father is:
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Found the following message board that seems to have quite a few listing from patients with varieties of urachal tumors. Perhaps you can find some resources for treatment centers/physicians here: Cancer Compass
Mrs RWs last blog post..This is what a Father is:
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Lisa:
Hope the new doctor from NYC is “the one” and give you all the answers you need.
I just wanted to tell you that I think a lot about you and your family and that you’re on my prayers.
You have the flag of courage and fight in your heart and that’s the one that really counts and will keep you strong.
I send you a big hug and all my support. If there’s anything I can do for you in South Florida just let me know.
Love
FERNANDA
Fernandas last blog post..Y porque somos una familia de talentos…
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I second Shelli’s comment. I live near Mayo also and worked at a salon connected to it for 2.5 years. I saw and heard many, many success stories coming from there. I was treated there myself!
If you can.. please give Mayo a call. They are awesome.
p.s. Shelli and I can carpool to meet you;)
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I hope you find your rockstar oncologist. I get that it’s rare, but that’s no reason for folks to give up on you… it just means it’s time to pull out the big guns, the new, innovative therapies. It’s all or nothing time. As for flags, you’ll make your own. Because that’s what survivors do.
Asthmagirls last blog post..Asthmagirl 1, lungs 1
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Maybe this is a stupid idea, but I keep seeing commercials for The Cancer Treatment Centers of America (http://www.cancercenter.com/) have you looked into them? Sorry if I’m just repeating stuff you’ve already been through.
Just keep fighting. Want me to design you your own flag?
Kyras last blog post..An Outsider In
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Nina, You really hit the nail on the head.
I will let you know about the train. One of my friends told me there is also a bus that runs locally so I’m not sure what we will do.
Angie, Anything that you could do would certainly be appreciated. If you need more information from me, let me know.
Mrs. RW, You are just awesome. Thank you so much for the links!!!
Fernanda, I wonder if there is an actual flag for courage because if there is I want it for my garden!
Sandi, I’ve heard some pretty awesome things about the Mayo Clinic. If Sloane-Kettering doesn’t have answers, then Dana Farber is next. If Dana Farber doesn’t have answers then Mayo Clinic is next.
I’m not giving up until someone can help me.
Asthmagirl, I know they have to be out there.
Make my own flag??? Hmmmm…what exactly should it look like??
Anyone have some ideas on that one?
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Kyra, We have one in Philadelphia but I haven’t hear ANYONE talk about it so I have no idea what their reputation is like or what kind of successes they’ve had.
All I know is that it’s in a dicey section of the city.
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I am an hour from NYC, in NJ – we have a spare room. Let me know if you need it. Seriously. It’s only $20 roundtrip from our train station to NYC. Also, if you really wanted to take the subway I could figure it out for you. Cabs are pricey but not insane.
EDWs last blog post..Let’s just kiss and say goodbye
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I just hope that some of the above links help you out, and a rockstar finds this! I’ve got nothing but prayers…and ((hugs)).
I’d say a flag of every color – maybe all together in tie-dye? That’s kinda rockstar in itself.
Tugs last blog post..In memory…
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EDW, Thank you so much for the offer…I will keep it in mind should we have a super early appointment. You are awesome.
Tug, A tie-die awareness ribbon maybe? Not to be confused with the multi-color puzzle awareness ribbon for autism. Hmmmm, that has possibilities. Maybe bedazzled??
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YES. I think the bedazzles could spell out FUCK CANCER – but maybe not in your garden. Back garden, maybe………
Tugs last blog post..Mondays SUCK the big one.
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I am so, disgusted that you have to do all the work, isn’t that what your doc is for? Why are you the one having to dig this stuff up, isn’t that why they have a medical community? Sorry, I am, perhaps, just angry about the situation.
I do not know any rock star oncologist, but I too live close to the Mayo Clinic here in bloody hot-as-hell-Arizona (but really nice in the Fall and Winter). If you ever head this way, I have a brand new casa at which you can rest your laurels. Invest in lots of microwave entrees though, cuz I no cooky, cooky in the kitchen.
Really, I am so sad and I don’t know what else to say.
Denices last blog post..Internet Love Song, Part I
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Tug, I’m not sure the neighbors or kids could handle that although I love the idea.
Denice, My doctor set up the appointment for me but I have to get myself there. If I can’t get results then I’ll try to have him set an appointment up at Dana Farber.
I feel like he’s completely on my side.
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Lisa,
I DO know rock star oncologists at Mass General Hospital in Boston. And we have a lovely and extremely comfy sofa to sleep on. I happen to have a friend with stage 4 colon cancer who has been kept alive and still working 40+ hours/week for over 6 years. He uses this oncologist at Mass General, who was recommended OVER Dana Farber. I never thought I’d hear that anyone was recommended over Dana Farber, but Mass Gen is a top hospital worldwide, so don’t forgo it over DF. If you do have to leave Sloan Kettering (which is a GREAT place), Boston is the city to go to. It has so many top hospitals, Brigham and Women’s/Dana Farber, Beth Israel/Deaconess, and Mass Gen come to mind first, but there are many more. Plus, there are so many bloggers that would help you, take you to the doctor, feed you, and comfort you. Just ask!
margalits last blog post..WFMW: Keeping Track of Library Books
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Margalit, Thank you very, very much for the information on the hospitals in Boston. You just gave me some much renewed hope. And thank you for the spot on your couch…I may have to take you up on it some day.
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Do they have a “Fuck Cancer” flag?
I think of you all the time.
Miss Ann Thropes last blog post..Because carpeting is stinky and messy
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