Monday, October 12, 2009
Saturday it hurt a little worse.
Sunday I got to poking around to see if I could pinpoint the actual area of pain since it now seemed to radiate into my entire left breast.
That's when I found the lump.
This thing seemed as big as a ostrich egg to me, but, since my breasts aren't much bigger than hen's eggs I knew my brain was exaggerating.
So then I naturally went Googling for the better part of Sunday and by the end of the day I was convinced I only had months to live.
I wasn't going to tell John or my mother (with whom we now live), I told myself, until I had gone to the doctor and found out if there was anything I should be worried about.
Yeah, right. I cannot keep my mouth shut and within minutes of telling myself to keep it to myself, I was listening to the whole lumpy story poor out of my mouth. Like an uncontrollable case of diarrhea I helplessly sat there spewing forth detail after detail, well, much the same as I'm doing now.
Note to self: check to see if they make Imodium BM (for "big mouth").
Anyhow, I can't stop the story now as I'm obligated to satisfy the reader and I'm sure you want to know if I've been told I only have months to live, right? You do care, don't you? (Please just say you do, whether you do or not. Thanks.)
Monday morning I called the clinical trial nurse to let her know what was up and see if she could get Novartis to pay the bill for a mammogram. I told her I thought you could walk in for a mammogram and not have to have a doctor's order at the local radiology center.
She said that was for "screening" mammos, not diagnostic like she wanted me to have.
She said I needed to get with my GYN and he could do an exam and then write the order for the mammo or ultrasound or both.
I called the GYN and the he could see me after lunch, but the only problem was that when I had to see him back in June and have a pelvic ultrasound, he'd never been paid for the visit. $160 that Novartis promised they'd cover.
So this visit they agreed to see me but only if I forked over $100 cash at time of service. Having a big painful egg lodged in my breast, what choice did I have? Besides, my mother made me go.
I'm telling myself the whole time that I didn't really feel a lump and that's it's all in my head. After all, it's Breast Cancer Awareness month and the pink ribbons are everywhere, along with shirts and bumper stickers and TV specials and news stories. A hypochondriac like me can't HELP but end up with certain breast cancer after being inundated like that.
I don the paper shirt and wait.
The doc comes in and asks me how I am. Why do they do that? Don't they know why you are there and that, because of that, you are having a less than zippittydoodah day? How moronic, eh? He should walk in and say "Life's sucking for you right now, isn't it?" And then he should tell me his is too because his Mercedes is broke down and he had to take the Jag today. We could commiserate.
I tell him the series of events that led up to my sitting on his table in a paper shirt. He listens and scribbles and then has me lie down.
He starts to palpate my left breast and stops at the noon position. "Is that what you are talking about?" he asks.
Geeze, did I miss something ELSE?? I wonder to myself.
"No, it's right about 4:00, or half past 4, but not quite 5," I tell him.
"Holy COW! That's HUGE!" he says.
The red lights flashed and the warning sirens went off inside my head. This guy who does this for a living every day and has done so for the past 30 years or so just said "holy cow that's huge". CRAP! that's NOT good!
All I could think to say was "but it's squishy, right? so that's a good thing?"
And his come back was, "Uh-uh, that felt mighty firm to me."
He says "The ONLY good news I have for you is that breast cancer isn't NORMALLY painful, but that doesn't mean it can't be cancer. It could even be that you have a painful cyst right up against a tumor."
He went on to say that it was irregularly shaped and not round. His estimate was 4 centimeters by 2 centimeters. (I just now googled how big 4 centimeters is and it's about 1.5" WOW!)
He said an irregular shape and the firmness, coupled with my age, family history of my maternal aunt dying of breast cancer, plus the fact that I haven't had a mammogram since 2000 were all pointing at probable bad news.
He said we'd move on to the discussion of course of treatment after I got the mammo and we see what's what.
I asked if I should get it in town or wait to see if the clinical trial could schedule it for me at Shands in Jacksonville and I wouldn't have to worry about paying.
His response was that we needed the info here if I wanted him to be in on making a plan. It's too hard to get records from Shands. In fact, he never got the pelvic ultrasound results from back in June. Case in point.
He wrote the order and said we'd make a plan when the results came back.
The diagnostic center was just across the street from his office so I went right over to schedule the mammo. I was in luck, they said. I could have it right now.
Great! I really wanted to get this over and get onto the next phase of dealing with whatever the result.
Turns out the nice lady who did the mammo used to work with my mother (before she retired) in the Medical Records department of Putnam Community Medical Center in Palatka, FL. She asked all about Mom and we had a nice conversation while I tried to ignore the fact that she was handling my boobs the whole time.
She did the right side first and it was fairly uncomfortable, but when she got to the left side it was all I could do to keep from screaming. I very nearly drew blood as I bit my lip to hold back the pain in my chest. I was sure she was going to pop that lump no matter what kind it was.
Afterward she told me to stand right there and wait while she went to see the radiologist who reads the diagnostic mammograms while the patient waits.
So I waited.
She came back in and apologized saying "The doctor wants you to have an ultrasound now so he can get a better look at what he's seeing to make a more positive diagnosis. The girl who does the ultrasound work is over helping out across the street at the hospital and we've called her back so she's coming right over."
She had me take a seat in the waiting room and left me with a "hope everything works out ok for you" that just seemed to drip with sympathy.
I did NOT like the sound of that! I've had my share of medical tests done where the tech knew what was going on but couldn't let on that she/he knew anything and this sounded more like "tell your mom if she needs anything after you're dead I'll be there for her."
I sat and tried to get a handle on my fear. I kept telling myself that cancer doesn't hurt. But my mind kept coming back to everyone I ever knew who died of cancer and how they seemed to be in awful pain. I imagined that mine was now painful because of the stage I must be at... past the point of no return.
Oh hell, just bring on the morphine and get me outta here.
Fortunately I only had time to read part of the pamphlet on "Breast Cancer: Your Treatment Options" before the ultrasound tech walked in.
I didn't think anything could hurt worse than the mammogram did, but I was wrong. I actually had tears running down my cheeks as she pressed to get the best view of the lump.
She said she would be right back. She was going to go see the radiologist.
Then *the man behind the curtain* finally appear beside my table where I lay covered by a towel.
He introduced himself and said he was the radiologist.
He told me my breasts were chock full of cysts on both sides. "But you knew that, right?" he asked.
"No, I had no clue." I said, still waiting for him to get to the point.
"That huge lump your GYN felt was a grouping of 4 or 5 cysts all lined up side by side. They are firm because they are very full of fluid. Your breasts build up fluid and the body gets rid of it as your monthly cycle waxes and wanes," he explained. "Your body just isn't very good at taking out the trash."
"We call that Fibrocystic Disease" and that's what I see going on here. The lumps can be painful, tender, sore. I can relieve that pain by aspirating the fluid out with a fine needle. Would you like me to do that now?"
I politely declined. Funny how, since getting into the extension phase of this trial and no longer having to stick myself, I have regained my previous aversion to needles.
"Ok, that's fine," he said. "But if the pain increases and you find it unbearable, you can always come in and have me do the procedure."
I told him I'd keep that in mind.
I asked if Fibrocystic Disease was a precursor to cancer and he said he didn't see anything anywhere on my scans that even hinted at anything cancerous.
I couldn't help myself and the biggest smile ever broke out across my face.
"Oh my God, Doc! I was praying for good news, but I was thinking along the lines of surviving 5 years, not that the news could POSSIBLY be this good! THANK YOU!"
"Hey, I just call it like I see it, it's not me you have to thank." he said as his eyes glanced skyward at you-know-who.
So here it is God: THANK YOU! I owe you one. Well, I owe you more than one, but you know that.
So now I sit here with boobs that have been handled more in the past day than a cheerleader's on Prom Night, and even though they are so sore I'm taking Ibuprophen today, I'm one happy lumpy lady.
And with that, let this be a public service announcement to all you women out there. This is National Breast Cancer Awareness Month and you need to go have that mammogram done.
For about 2 hours of my life yesterday I was absolutely certain that I had a large cancerous tumor in my breast and I now know what that terrible fear is like. I was lucky this time. I could just as easily been sitting here writing about how scared I was of my upcoming chemo or mastectomy, etc.
So go get checked out. You know who you are. Quit putting it off. Too many people love you.
Friday, October 9, 2009
I was reading some story on the front page. I don't even remember what it was about. It was continued on page 7a, the inside of the back page of the first section.
Right where the obits are.
I scanned the page searching for the rest of the story when my eyes locked on a small picture probably 2" tall by 1" wide.
"I know that guy," I said to myself. I just couldn't remember who he was. My eyes flew up to the obit title. It was my best-friend-from-20-years-ago's husband. Karen's husband.
We haven't *hung out* for 20 years since we sort of slowly quit doing things together. Mostly it was my bad choice in men that prevented our friendship from enduring. I married a drunk who took up all my time and isolated me from the world while I tried to *fix* him.
She married Joe, a dream-come-true kind of guy who was everything any woman ever wanted in a man. Hunky, smart, loving, funny, a great cook, a good friend, an awesome host of the greatest keggers known to man... and a lot more I'll never know about.
Karen and Joe. The perfect couple. The ones you just knew would be together until the end of time.
I was looking at his obit and it said he died at the hospital, unexpectedly, at the age of 51.
That's not my idea of the "end of time" as was promised in all the fairy tales.
My jaw dropped and I pictured Karen hugging her pillow, overcome with sorrow and grief.
It broke my heart.
I couldn't call her because I didn't have words to say that could convey how very sorry I am for her.
Last night my sister (who used to work with Karen) went with me to the visitation.
The parking lot was packed with cars, just like the land around their place always was when the bonfire was going by the pond and the BBQ smells wafted across the hot summer nights and the sounds of laughter and pleasant conversation filled the air.
The door to the funeral home was opened by the polite and somber staff, and sounds of Lynyrd Skynyrd drifted across the room. We were led to a guest book to sign our names. I looked up and there, beside the book was an easel with a huge wedding photo of Karen and Joe.
I burst into tears.
I remember that day. It was the most magical day I ever experienced and I had always wished it had been my magic. But it was Karen and Joe's day. Karen was a beautiful angel all dressed in white with flowers ringing her golden hair and Joe was the knight in shining armor, (ok, a white tux) who was there to bring her a new life of joy.
One they both deserved. One they lived to enjoy for 16 more years.
I moved on from the guest book to cross the open doorway that led into the sanctuary where the people were gather in pews and milling about in quiet conversation.
I wasn't ready to go inside.
On the other side of the doorway was a lovingly created display of photographs. All the good times, captured forever on film. Every one of them had Joe's smiling face. Most of them were cheek to cheek with Karen's smiling face.
My sister and I looked up and I saw a face I remembered from 20 years ago but had no name to put with it. I saw lots of people I knew I knew but don't have a clue who they are. Whether it's just age related memory loss or MS stealing my past I guess it makes no difference; I am starting to accept the fact that time is robbing me of my memories.
Anyhow, this person from my past remembered me enough to smile and say "Karen was asking about you and if anyone had heard from you."
This started me crying all over again.
What a lousy friend I've been that I could let anything come between us. She'd always been the best friend a person could ever ask for and I just let this time slide by while I kept telling myself "I really need to call Karen and see how they are doing...it's been so long."
We entered the sanctuary and there on the back wall was a video of photos playing, with Joe's grin smiling over us as if to say "everything's going to be alright". I asked quietly if someone knew where Karen was and they whispered "she's down front wearing the black suit".
I made my way down there and got in line to greet her as everyone offered their condolences. She saw me over the shoulder of someone she was hugging and I could see in her eyes she was surprised and happy to see me. As happy as you can be at a time like that.
I gave her a big hug and cried in her ear, croaking out an "I'm SO sorry!"
What the hell can you say at a time like that??
She put her arm around me and we all walked over to a pew to sit and talk.
I told her just how envious I'd always been of her wonderful marriage and that she had the most wonderful guy in the world.
She tried to tell us the story of what happened, but understandably, she wasn't really able to talk about it.
From what I gathered, their time had been taken up recently with caring for a sick, elderly mother who was being hospitalized. Her's or his, it wasn't quite clear. Next thing Karen knew, she was rushing Joe to the hospital where the doctors came out and said "we're sorry, your husband is dying." And then he was gone.
She said "he new he was sick but he kept it from me."
Not sure what he died of, but that's a heck of a way for your spouse to find out.
I feel so bad for Karen.
But you know, I've speculated that if it was cancer and Joe found out a while ago, it was his right to refuse treatment, or to keep the knowledge to himself.
After all, dying is a very personal and private thing. No matter how close another human being might be to you, they will never know your personal death. They might be there to witness, but death is a solo flight.
Joe chose to keep the inevitable to himself and not dwell on it.
I don't know how long he had known he was sick before he died, but Karen said they had gotten to spend the last 3 years together 24/7 after they had both retired and she will always cherish that time.
Today is the memorial service. A tribute to his life. Afterward there is going to be a big party at the pond. Just like Joe would have thrown. Just like he would have wanted.
And after the party is over, and all the guests have gone back to their lives, I promise I won't forget about Karen.
I promise to be a better friend.
So long Joe, we will ALL miss you!
Monday, October 5, 2009
Maybe it really did cave in and crush me after all, and all those fears were rational?
For all the other MRIaphobes out there, you can relax. I lived through it.
And with 1/2 of one of the two .5mg Xanax pills my trail nurse called into Walgreens for me, I very nearly fell asleep during the whole ordeal. This is the same MRI that I was yelling "get me out of here!" from before the forward movement of sliding me inside was even complete just a week prior. Funny how a drug can alter your perspective so drastically.
Actually, I was pretty anxious before they slid me in this time. The tech said we probably could have let me "soak" another 10 minutes for maximum effect.
I had to do some zen-ish calming deep breathing on the way in, but after I got a little relaxed, it seemed like it was over in no time.
The plan had been to envision the beach and do some astral projection type mental exercise, but the truth of it was that I got in there and started going over all the stuff I needed to do when I got home, and made a mental grocery list, worked out the logistics of some errand runs for maximum gas usage and blah, blah, blah.
Xanax makes me into the average boring housewife, I guess. And I'm not even married.
I got my next 3 months of meds, never heard a peep about the results of that angiolipoma biopsy, and never got pulled from the study. So, no news must be good news.
There seems to be an awful lot of internet chatter lately about Fingolimod/FTY720 and results of the 2nd year of the FREEDOMS study, and it's all good. Something like a 60% reduction in relapses over Avonex?
Quote from the Wallstreet Journal, September 30, 2009:
Well, I don't need any stinking WSJ report to tell me THAT! Let's see... I have to go to www.wolfram-alpha.com to find the answer...just a sec.By Anita Greil
Of DOW JONES NEWSWIRES
ZURICH (Dow Jones)--Swiss drugmaker Novartis AG (NVS) said Wednesday a new study showed that patients taking its experimental oral multiple sclerosis drug FTY720 were more likely to go two years without seeing the disease flare up, paving the way for a possible launch as early as next year.
That's some kinda freaking record for me! In all of my MS-having history of the past decade, I have never had a hiatus like that!
I actually thought my streak was shattered last Friday. I spent the day babying my right leg which felt kinda like I had worn steel wool pants and then got dragged behind the car while holding onto a rope, sitting on the pavement.
But just on the one leg.
My skin felt raw and it was on fire...either that or packed in ice. I couldn't decide since there are only fine nuances that differentiate between the two.
Then, after fretting all day that I would have to call my trial coordinator on Monday, I went to sleep that night and awoke Saturday morning to blah, bland, back to normal. Whew. That was a close one.
I know it's got to happen again eventually, but I'm enjoying my extended stay in the Land of De Nial. As long as I can't feel the symptoms, I can talk myself right out of having MS... and even tho I really DO know I have it, there's no harm in pretending.
As long as I don't forget to take my little magic pill.