Unpronounceable Cancers

You know what is worse than toe cancer? Unpronounceable cancers. Waldenstrom’s Macroglobulinemia, as hard as it is to believe, is not the easiest cancer to say. Why does so much money go to breast cancer research as opposed to Waldenstrom’s Macroglobulinemia? Breast cancer is easy to pronounce.

Now, what the hell am I supposed to tell people when they ask what’s wrong? “I’m fine, except I have an unpronounceable monoclonal lymphoprolific malignancy called Waldenstrom’s Macroglobulinemia.”? Why do I get all the big challenges?

Breast cancer, now breast cancer was easy to pronounce. No problem, everyone knows someone or knows of someone who has had it, so people are willing to throw money at the problem. But Waldenstrom’s Macroglobulinemia? Please. Not to mention only 2 out of a million are diagnosed with it. And why is that? Because it is unpronounceable. That’s probably why Dr. Gorgeous was so quick to dismiss my breast cancer as a fluke– it is so easy to pronounce compared to Waldenstrom’s Macroglobulinemia. 1500 people a year are diagnosed with Waldenstrom’s Macroglobulinemia, and it is considered a rare disease. Only these people are chosen as bright enough to be able to pronounce it, so I guess I should consider myself lucky. And thank G-d I didn’t get something even MORE difficult to pronounce. Because, still, there are no parades for toe cancer.

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Picking up my keys.

Can you fucking believe it?
Just when I thought I had escaped the Guys In The White Van, here they come with a left hook to the jaw. Out of the blue. When I least expected it. But, that’s why we moved to the Big Apple, because I was getting worse in Flower City and no one could tell me why. Now I found Dr. Fancy and he knows people. Man, does he know people! First was Dr. Hauser. He diagnosed my infected mesh and took it out like it was his job. Because it was, indeed, his job. That was step one. Step two was figuring out the bone shit. He didn’t send me to the rheumy, Dr. More. I found him by doing research. But, Dr. More, G-d bless his nerdy self, was able to figure it out when no one else could. It wasn’t RA like they all thought. It wasn’t even osteoarthritis, like I thought. Of course, there is some of that, but the best thing Dr. More did was know he was out of his element and tell me I needed a hematologist. And today was finally the day to meet said hematologist. Am I glad I did! He is absolutely GORGEOUS. I see what H-Shem did– he knows I hate the second part of Dr. Gorgeous’ title (he is a hematologist/oncologist), so he gave me a really cute one. If I have to see an oncologist, at least bring me a cute one.

So, here’s why I started writing after such a long hiatus. I went to Dr. More, the rheumy, to follow up on what they’d been doing in Flower City. He said, “well, since they couldn’t figure out what was going on, I’m going to start from the beginning.” He did some tests that had never been done before, some others that have been repeated time and time again. And BOOM, there was an immunoglobulin pattern he didn’t like. IgA deficiency like I said, but also an IgG deficiency. Those alone are fine, but he went a step further and tested my IgM. It was more than double the outer limits of high normal. “See what you have here,” he told me one miserable wet Thursday, “this is an ‘M spike.'” Here’s your problem right here. This looks like you have a macroglobulinemia. You need to see a hematologist, and you need to see one right away.”

Well, it’s not my first time at the rodeo. I knew what that meant. I called my Dr. Fancy and asked for his recommendation. I got it, gave them a call, and here we are with me listening to Dr. Gorgeous tell me it is pointing to macroglobulinemia, Waldenstrom’s, or a lymphoma. I remembered one of those yahoos way back when told me I had a precursor to cutaneous t-cell lymphoma. Could it have ripened? How about that bone bull shit they were monitoring me for, could THAT be spiking my M proteins?

Well, what ever it is, it isn’t good. Dr. Gorgeous thinks it is an unusual presentation of Waldenstrom’s a type of macroglobulinemia. I don’t know about treatment, prognosis, or any of that bullshit yet. All I know is the keys to my condo in Cancerland just got a whole lot heavier. Fuck cancer.

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Fighting Pinktober

So, here we are 18 days into Pinktober, and I have not yet vented my spleen. This is causing a backup in psyche-bile, and I have a lot to say. However, (and this is the excuse I am giving for my blogging absence), the severe, advanced spinal stenosis that has caused me to be on medical disability this semester, prevents me from typing more than 15 minutes at a time. At least that’s what I thought it was when I sat down to type this blog. I got to the word ‘Pinktober,’ and the searing-hot numbness began, creeping slowly from my cervical-cranial junction inching up toward the top of my head like a family of fire-ants looking for a picnic spot. I have to stop every five words or so. I look to the right, left, up, down, anywhere but directly at my monitor. To look at the monitor is to have the cranial fire ants begin their breakfast. Not pleasant at the least, but I’m happy I took typing class now. I can touch type and amaze my seven-year-old by typing and not looking at the screen:). However, this is no way to live. November 13, I am going to have a four-or-five level laminoplasty to open up my spinal canal and take the compression off the four places my vertebrae have disintegrated and are sort of leaning on my spinal cord. Not enough to paralyze me, thank G-d. Yet. It is the yet that scares me–so far I just drop things and trip every once in a while, can can’t type at a screen. If it progresses, I could be paralyzed, and that just doesn’t sound fun. Frankly, it sounds frightening.

But, what scares me more is Pinktober (heh, nice segue). All month, I have been reminded that I need to ‘fight’ breast cancer. Now, having given my girls for the battle, I have something to say about the fight–about fighting cancer, about fighting for the cause, about fighting like a girl, about, even (don’t say it!) fighting for one’s life. I don’t like it. I don’t like it one bit. Why? Quite frankly, fighting sucks. Period.

Think about the last fight you had with someone you cared for deeply. It could have been this morning. Maybe it was with your husband, partner, child, maybe even your pet. I can guarantee you this: the fight was probably stupid. Most fights with loved ones are over some petty, trivial stuff that doesn’t really matter. Everyone gets upset, maybe yelling ensues, both parties blow-off steam, then all is right with the world. The same is not true for the people Cancerific. Yes, everyone does get upset, and perhaps there is yelling. However, the cancer doesn’t go away after the steam is blown off. One cannot fight cancer the same way one fights with loved ones. When ones’ life is on the line, trivializing the all-encompassing energy that goes into removing the pathogen from our physical and psychic being into just a ‘fight’ is demeaning and demoralizing.

Cancer treatment is much more than just a fight. Making it a fight means that if we lose the fight, we didn’t try hard enough. Too often I’ve heard people say about my Cancerific sisters who were lost on the battlefield tattered and torn, “well, she fought hard,” as if we should find solace in that she did not go softly into that good night. Why? Sisters (and brothers, not dissing the bros), this is not a fight! True warriors don’t leave their comrades on battlefield tattered and torn and just shake their heads, walking away secretly happy it wasn’t them. They retrieve their fallen comrades from the field at their own peril. They find ways to prevent another fight in their fallen comrade’s memory. They battle royale. They make sure no one in their unit is harmed again. Ever.

But sometimes, The Guys In The White Van don’t let warriors return to the battlefield–and sometimes, no matter how hard we fight, we don’t make it. Period. I’ve heard so many sisters talk about their fallen siblings and friends…”she fought hard, but she didn’t get her mammograms regularly”…”Oh, she was a fighter, but the medication just couldn’t keep up with the cancer…” “She lost her fight with breast cancer…” I know some of you out there are grieving now, and when I see the words I just typed, I think of my own loved-ones lost. The loss saddens me in a profound way–because in a way, their deaths are my own. It saddens me deeply that I could not go back to the battlefield to gather my fallen loved-ones. Our diseases were the same–our fights, why so different? Did my loved-one fight the wrong way? What helps me move through my day is the sincere belief that those brave souls passed did not die fighting, they died living.

No longer will I say I am (or anyone is) fighting cancer. Instead, I will say I am living around cancer. Unfortunately, some of us pick up keys to our Cancerific time share more often than others, but please, no fighting. Fighting is anxiety producing–I don’t need any more anxiety in my life, nor do you. Fighting releases cortisol and other hormones bad especially for the people Cancerific. Fighting (at least a well-executed fight) sometimes involves planning and strategizing, and quite frankly, I don’t have time to execute that level of detail and energy for something that doesn’t deserve the knotting of my stomach and venting of my spleen. Simply put, I don’t have time for this sh!t. Other types, perhaps, but right now, I no longer fight cancer, nor do I provide aid or purchase in the fight against cancer. It takes two to fight. The Guys in the White Van might be tracking me, but what I’ve learned in my son’s Karate class is that if I am not a victim, an attacker will not strike. No fighting. No stress. No cancer. No Pinktober.

Amen.

;

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Facing the Wall

This being the month of my ‘mastectoversary,’ I’m hyper-aware of the changes that have occurred to my body and psyche since I was kidnapped by The Guys In The White Van. Some of these changes, like spidey senses and being more sensitive to the pain of others, are positive outcomes from a terrible health sentence. Others, like horrible night sweats and an increase in anxious moments, are awful, constant reminders that I am not the same person I was before I picked up the keys to my timeshare. A constant theme running through my private thoughts, the ones I don’t even share with The Internet, is that my life is like one of those rooms from the Batman series from the 1960s, with walls that close in ever so slowly…picking up in speed and rate from time to time, corresponding to the type of medical news I’ve been given. ‘Just’ a sinus infection? Walls close in slowly. Bronchitis? A little faster. Breast Cancer? A lot faster. You get the picture.

Even though my breast surgeon assures me that I have no evidence of breast tissue to become cancerfied, I am still watching the walls close in on me. It isn’t coming from any evidence of metastatic disease (but I am laden with many precancerous skin issues that cause the walls to move faster or slower, depending on how itchy I am). Instead, the walls are closing in faster than usual because of a ‘leftover’ of my cancer treatment–a degeneration of my spine, both cervical and lumbar.

All of my treatment was surgical. Remove breasts, remove ovaries, tubes, and uterus. Remove any cancerous lesions of the skin. All chopped up? Excellent, go on about your way, we’ll see you in a year. Even though I did not suffer through the torment of chemo or the burning of radiation, my treatment choice still leaves remnants that impact my ability to function on a day to day basis. Since this time last year, I have had a worsening of degenerative disk disease in my odontoid process, C1/C2 cervical spine. What is that? Take your hand. Put it on the base of your skull on the left side–where your skull meets your neck. This part of me is becoming Swiss cheese. Your odontoid is the peg that keeps your head on your spine. Mine looks like a mouse has been nibbling at it.

When I touch this side of my skull, I can see the walls moving in faster. I’m in constant, stabbing pain on that side when I try to type too long, drive too long, sit too long, etc., leaving me unable to lift my arms very well. I also have degeneration in my L2/L3 that, in the words of a neurosurgeon, is “very, very bad.” Combine that with the broken ankle that happened just from walking and the ‘Swiss cheese’ appearance of my cervical spine, and it is clear the walls are moving closer. This has gotten considerably worse in just the past few months, however not one doctor can tell me why. I have been bounced from four different ‘experts,’ all freaked out at my CT scan. The last one, so very tactfully said, “Who told you you don’t need surgery? Well, if you have severe pain, or start peeing or pooping yourself, get to the ER. I can’t do anything for you.”

Seriously? Now THAT is some fine healing. Not one of my medical team can tell me WHY this degeneration is happening at such an alarming rate. Yes, as the medical ‘experts’ tell me, it is a result of my ovaries being bye-bye. It runs in my family, sure, but why so much just since May? Is it because of the size of my implants? Because of the silicone? Is it, like everyone has been telling me since I was 13, because I don’t eat meat? Not one doctor is willing to tell me why this is happening, just that it isn’t metastatic. In fact, my medical oncologist said, “I think there is something really, really wrong with you, but it isn’t cancer, so I can’t help you.” My neurosurgeon kicks me to the spine doctor, who throws me to the pain doctor, who asks why I am not at the neurosurgeon, on the operating table. Combine that with being told the changes to my bones were metastatic four times, then, OOOPS….not metastatic, and you see the walls closing in just a little bit faster than usual.

I have been researching rock star medical teams in my area, but I’m a little overwhelmed. Where do I begin? The reason for the degeneration? The degeneration itself? The pain? And why don’t I have a medical person coordinating my care? I am an educated self-starter who knows how to research. I can’t imagine being in my place and not knowing what I know–the walls would close in faster still!

I’m putting this out there in hopes someone will read this blog and tell me who I should see about my bone degeneration. No one wants to help me, and I don’t know where to begin. I’m having an increase of disturbing symptoms, like dropping things and tripping. I DO have an appointment August 31 with a ‘rock star,’ that will perhaps be able to give me information, and I’m going to force my DEXA scan on my ankle doctor when I see her this morning. She has to be able to tell me why a 47 year old’s ankle would just snap in the middle of the street when wearing Merrells. Cute Merrells.

In the mean time, I feel like I’m in that room with Batman and Robin, watching the walls of room close in. So far, the room is still fairly large, but every time I drop a glass or fall over nothing, the walls inch closer. I have a baseball bat that I can use to keep the walls from totally crushing me, just like Robin did, but let’s not let it get that close. There is no Alfred to get me out of this mess.

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A Year Later

August 2, 2012, was my year anniversary of my bilateral mastectomy with immediate reconstruction. A year since I picked up my keys to my timeshare in Cancerland. A year since the cancerous mass (and those waiting to bloom) in Lefty was removed, along with Righty and all the lumps she held. It has been a year of ups and downs, and one that I could not have made alone. I am grateful for those I’ve met along the way who have helped me through this process.

One of my biggest sources of support has been an amazing group of ladies I’ve never met. Early into my journey I joined an online group for ladies with various shapes and forms of breast cancer. I found my way into the August 2011 space and began to make friend with “invisible” people. I was glad to be able to share with others going through the same fears and triumphs.

One thing that really helped me was meeting other professional women with a timeshare. One of these invisible women was called “blondelawyer,” I assume because she had blonde hair and worked as an attorney. She started the August 2011 surgery group. We shared our fears and hopes.

Blondelawyer had a more aggressive form of breast cancer than I did, and as all the gals in the August group had their surgeries and began various treatments to get better, she seemed to get worse. She had lost her husband five months before she was diagnosed at 32. He was 34 and had CP. Blondelawyer still kept going–posting pics of her new wigs in various colors, detailing the care provided to her by her beloved father-in-law, as her own father died unexpectedly soon after her husband. She was a constant source of hope and inspiration to me.

But, like invisible people will, Blondelawyer drifted out of my life. I found other groups of ladies to virtually hang with, and we all went on with our treatments and lives. But, she was always on my mind, and I always wondered how she was getting on with her treatment, her mourning, and her life.

Last week, almost a year to the day that I had my surgery that got me into the club, Blondelawyer died at 34. Her last post on her blog is just one sentence… “I miss my husband…” She detailed all the pain she was going through, all the despair she was feeling…and her loss of hope when the doctor told her the disease had advanced to the point that they gave her only a year to live.

She didn’t make it. And even though she was an invisible friend, the loss of her in my life is a visible hole. She was the reason I felt secure going into my surgery a year ago. She gave me hope and was a source of inspiration for me. Now she’s gone. I don’t want to be selfish, because her pain, both physical and psychic, was enormous. However, I feel cheated that I didn’t get to know more of this beautiful person.

Last year, looking forward, I never thought I would have had to experience the tribulations I have. It would have been too much to handle all at once to know I would undergo five (I think) surgeries in such a short span of time. The keys to my timeshare seem to be securely on my keychain even though I keep giving them back. Getting through all this would have been impossible without my invisible friends.

One year later, I thought I would maybe get to know my friend Blondelawyer as she healed. Instead, I mourn her passing, and hope she has peace with her darling husband in a happier place. May her memory be for a blessing.

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Booby Prizes

If all the trinkets and chachkas I’ve won over the last year are indeed payoff from The Big Guy (and not Ed McMahon) for being Cancerific, what I got the day before yesterday was almost the evil opposite of a consolation prize–almost as if He was making fun of me!  Consider Tuesday’s booty (ha) more of a booby prize.  Here’s why:

Monday morning, Dr. White and his Evil Assistant assured me that yes, while I will be donating my own fat to my ever-changing breasts through liposuction, it wont be as if I was there for cosmetic liposuction.  You pay for thin thighs, they gonna suck some fat! You just need some for a little padding in your bra, they can’t justify taking 500 cc’s of fat when only 50 cc’s are needed.  Or so they told me.

Monday morning, I was told I probably needed 20 cc’s of fat added to my reconstructed breasts to soften areas of angularity and to fill in some areas of painful atrophy.  In identifying a donor area on my body, they went for the middle.  My belly, they said, had 30-40 cc’s available (thanks…), so there would be a BIG cosmetic difference in my belly if they took from there–the flat belly of my dreams, they bragged!

“But I want my thighs gone!”  I begged.  “My belly is flat enough!”  While I relish my role as a Sephardi mother, my Ashkenazi ancestry is evident in my bottom half.  How I have longed to have the fat sucked out of my thunderous thighs!  I never believed I would ever pay to have liposuction (not quite vain enough), but if the opportunity presented itself… And here was the opportunity!  So close–take from the thighs!

Here, again, was proof Hashem heard my prayer–and decided to only give me part of what I prayed for–just a little lipo to make up for the little bit of Breast Cancer.  And tease me–no thigh lipo.  HA!

Or so I thought.  Right before I went under, I pulled the Chief Resident toward me.  “Listen.  I’ve been though a lot.  I wouldn’t be so sad if you, you know, took a little bit EXTRA from my thighs.”  “I’m sorry, ma’am, I don’t think we are going to use your thighs at all…”  He continued pushing something into my IV to make me shut up.  Again, I addressed him.  “Whatever.  Take the thighs…”  The next thing I remember, I was screaming for pain medicine to put out the burning in my upper thighs.  The only thing that distracted me from the feeling of fire ants running up and down my legs was the stabbing pain in my new breastal region.  The area I affectionately called, “The Finger Lakes,” was filled in nicely, but ached like nothing I’d felt before!  And let’s not even begin to discuss the pain in the t-shirt tater that was reconstructed!

However, my husband tells me I WON the ‘Boobie’ prize!  At the requisite meeting of surgeon and husband (while I was in recovery), Dr. White let my DH know that “she’s going to be very happy with her silhouette”  Apparently, I got ‘extra’ thigh lipo to go with the stomach lipo (“She was right, she didn’t have enough,”).  My Ashkenazi thighs yeilded lots and lots of fat to graft on my reconstructed cantaloupes.

I didn’t think lipo would be that noticeable, more of a booby prize than anything, until my husband, ehem, decided to critique Dr. White’s work.  This man who has been a fan of my tachat for 13 and a half years and knows my body as well as I do took a good, long look, then exclaimed, “Oh my G-d!  They took your whole @ss!”

Booby prize, indeed!  This, my dear husband, is a booty prize.  ;)

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Winning

Those of you who know me outside the blogosphere know that my luck, relatively speaking, has been fantastic since I was diagnosed with DCIS on April 14, 2011.  I mean winning tangible goods–things!  Good things!  Things I would not buy myself!  But there has been a downside to acquiring all these prizes.  Without fail, my winning has coincided or forecast my receiving bad medical news.

It started the day I was diagnosed.  Feeling very sorry for myself, I went to a community raffle event for women.  I knew I would run in to some girlfriends, and was hoping someone would pick my heart up off the floor of my newly minted Cancerific condo.  Needing $20 to buy six tickets, I walked dejectedly to the ATM.  There, sitting in the cash dispenser, was a crisp, new $20.  I couldn’t believe my luck!  Then I realized it was a test, and brought it to the front desk at the JCC.

The woman looked at me like I was crazy.  “What is this now?”

“Someone left it in the ATM.  I know they’ll be back.  If not, here’s my number.”  (so far no calls)

“Um…OK…” (probably thinking…’Who the Hell gives back $20 that she just finds?’ And that would be me.  At least on that day, at that time.)

I walked in to the auditorium and bought six tickets for $20.  The way the raffle worked was you put your ticket in the basket in front of the item you hoped to win.  I viewed the nearly 25 different items up for the bidding, chose my favorites and waited.

I didn’t have to wait long–soon, every other name called was mine!  It became a joke!  I’ve met people since who only know me as the crazy lady who won every prize at the Ladies Raffle. When the laughter was done and all the tickets called, I won five out of six tickets worth of prizes, everything from a lovely turquoise and diamond heart sterling silver necklace and earrings, to fine art photographs, museum tickets, and more!  What mazal I had on that day that I learned I wasn’t invincible.  I was a winner when I was diagnosed with Breast Cancer, and had five prizes to prove it!

It was at that same event that I found my friend M.  I commented on the beautiful glass heart on a silver chain she wore.  She told me her mom gave it to her on her last chemo treatment for breast cancer.  She then shared she had bilateral mastectomy and reconstruction.  I almost passed out from gratitude to Hashem.  I asked Him for help and He sent it THAT DAY! Here she was, right in front of me!

He answered my prayers in a very real way that day, from the $20 to the prizes, to M, who has been a constant source of inspiration ever since.  The Breast Cancer, too, I suppose, was a gift from Him, although I’d give back all the prizes to have my real tatas back, Uncancerific, please.

I’d like to say that’s where the story ends, but that was only the beginning.  Later that week, I won a $50 gift card from a raffle at work.  Then a golf shirt.  Later that summer, Quaker Oats sent me an mp3 player!  Who wins one of those contests you enter from a box top?  Oh, that’s right, ME!

The drawback to these winnings has been severe.  Every time I’ve one something, later in the week I’ve gotten bad medical news about being Cancerific, or with something related to being Cancerific, like the $500 Jay Strongwater picture frame with autographed card I won at another community event.  The next day I was told I had a lesion on my L2 vertebrae that looked malignant.  Woof.  Take the frame back, please!  After much debate, it was decided I would not have a bone biopsy, instead, I’d wait three months to see if the Cancerific cells grow.  Awesome!

A month ago I won a gift certificate to my favorite clothing store.  Don’t remember even entering that one, but it landed me in the hospital with a UTI.  The month before I won free admission to Darien Lake, a Six-Flags amusement park and went to the hospital with chest pains (turned out to be strained muscles, I’m thinking from the implants).  So imagine how excited I was earlier this week when I won ANOTHER gift certificate to my favorite clothing store AND a free gift certificate to one of my favorite online boutique sites.  Thursday I got the results of my imaging.  It has been three months since I won the picture frame.  Since my prizes were not THAT huge, I figured the information would be bad, but perhaps not fatal.  Unfortunately, I still don’t know the answer.

Thursday I DID find out that I do NOT have metastatic bone cancer.  However, the spot on my L2 has gotten worse and looks like osteoporosis.  The day before my amazing dermatologist used a 2mm punch to biopsy a spot on my right upper thigh and right forearm to check for something called Mastocytosis.  I get the results in 7-10 days.  I asked her about the procedure.  “So, if this shows Mastocytosis…”  She stopped me.  “Oh, don’t get me wrong.  You HAVE Mastocytosis.  We are doing this to stage you to see if/how much chemo you will need…” Win!  I win!

Wait.  Chemo?  Did that bitch say chemo?  Doesn’t she know I cheated The Guys In The White van TWICE? THIS is why I won a gift certificate? I escaped The Guys as a child and adult–why chemo?  And yes, her mentioning chemo made her a bitch.  She was amazing before she uttered that word.  NOTE:  I don’t need to win anything else!

It seems my mast cells are going crazy and need a little taming.  Chemo sort of ‘resets’ the histamine-response that has gone crazy in my system.  The thing that pisses me off is this is exactly where we where before The Guys distracted everyone into thinking my being Cancerific was the problem, not crazy mast cells. And let’s not gloss over the fact I never won anything when my face was swelling for no reason.  I spent a total of a month in RGH and SMH between October 2010 and Decemer 2010 without winning nary a card game with my child.

Now, 18 months later, having won many, many prizes, here we are with another doctor walking me down the chemo path, this time for a disease that is not a cancer, per say, but is treated like a cancer because it involves bad cells that release toxins and cause damage to the GI, skin, colon, bones, joints, headaches, etc.  Kill the bad cells before they kill the patient, I guess is one way to look at it. Win.

Will I keep winning?  Time will tell.  This Tuesday I am having Cancerific surgery to repair a faulty Alloderm sling (holds the implant) and liposuction some tush or thighness to create a little cleavage to replace the awesome one that The Guys took from me.  I can tell you one thing–I’m not buying a lottery ticket!  Last time I won and learned the moles that were removed from my back were pre-cancerous!  I can’t imagine what would happen if I won the Mega Millions!

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