Hadassah Chaya, Cancer Queen x3

I know I’m supposed to be all strong and lemonade-y (referring to the Beyoncé joint), but right now there is a lot of suckage going on. Last Thursday I finally arrived, in two significant ways–one sucked ass, the other was the fulfillment of a lifelong dream. Because I’ve been trained and have trained others in the art of the shit sandwich, I know enough to deliver the good news first. 

Good way in which I arrived: As a senior in high school, I desperately wanted to see my name in a byline, in print in a well-circulated periodical. Last Thursday,my fifty one year old self gave a gift to my seventeen year old little girl self, and realized that dream with an article in the May 19, 2016 edition (page 32) of the Jewish Connection. The article is entitled: Hope Solid Lotion: Lotion for Life, and is a scintillating read about the benefits of solid lotion. 

Bad way in which I arrived: After waiting about a month, I finally arrived at the Emerald City, and met the wizard who is supposed to give me a new immune system. At least, she’s supposed to figure out what everyone else could not. So far, Dr. Mice has impressed me in a way no other doctor has. She has confirmed every fear I have had, while other doctors have poopoo’d these as phobic… But, when I had her feel the almond sized lymph node she actually felt it, too. She also noted my blood gammopathy, and indicated I could have more than one cancer. I know it sounds nuts, but since I’ve thought this all along, it is nice to be treated as a partner in my health care, instead of a hypochondriatic histrionic. 

So, I have my keys to my timeshare in Cancerland. I have an appointment for a PET/CT scan in early June, followed by a consultation with the dermato-oncologist from The Emerald City. We will figure out if I have any more cancers in addition to the Stage 1b mycosis fungoides. I feel like there will be a few surprises in my blood. I’m hoping it isn’t as bad as I think it is. I’ve waited a long time to find my way to my way to The Wizard. I hope she isn’t just a holograph blowing hot air like all the other wizards I’ve seen on my path. I’ve given up so much to get where I am. There has to be something over the rainbow. 

A true shit sandwich will end with a positive spin on the filling. I’m trying real hard to focus on the positive, staying busy to quell the voices and images rushing through my brain. So, here’s the positive take on the whole thing: I’m guessing there is a great gift shop in the Emerald City. Who knows, maybe they’ll want some Hope Solid Lotion. See? Lemonade. 

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Cancer, the Next Generation 

What’s the saying, “fool me once, shame on you, fool me twice, shame on me. Fool me a third time”…well …there really is nothing funny about cancer, the third time around. Perhaps love IS sweeter the second time around, as St. Frank warbled.   But cancer? There isn’t even a parade for a third occurrence of cancer. 
You know how it is when a celebrity has an unfortunate relapse into the the world of the Guys in the White Van. So irresistible they are that the press is all over a second occurrence. Game shows, soap operas, music contests all stop with the announcement a beloved character is at it again with the cancer. Parades are held, dances, bake sales, all done in the name of getting rid of the scourge that has infected our dear one a second time, lo aleinu. (literally means “not us,” so you shouldn’t bring an evil eye on yourself)

But then it happens an unprecedented THIRD time?! No, I’m sorry, it couldn’t be happening. “Sorry, we’re all booked at that time. Please call back later and see if there has been a cancellation.” The sense of urgency promoted in Round II is perhaps lessened somewhat, as, after all, this is the third time. It isn’t like the cancer is going anywhere. An appointment four weeks from now is just as good as this week. 

I do know this. Of all my superskills, one thing that I am very good at is not only being kidnapped by the Guys in the White Van, I believe I might be actually the one driving the van. This isn’t my first or second time at the races, after all. I’m no newbie–no, I am VERY good at growing cancer in various places in my body. Wonder Twin Power? Cancerocity. 

So, I will keep the van running until I meet someone with greater super powers than ‘cancer maker.’ Hopefully I will meet this person sooner than later, because I’m not getting any younger. My waistline might not be spreading, but my cancer sure is. 

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My oh, Mycosis Fungoides!

Here’s a funny joke for you–last Tuesday, April 5, 2016, I celebrated five years since the cancer was removed from my left one.  Most people would celebrate with cake, maybe a new dress, a trip to the bar…not me!  I celebrated by finding a new dermatologist associated with NYU in hopes a fresh eye might be able to finally diagnose the strange rash I’ve had for YEARS.  It first became bothersome in 2010, but it has exhisted with me over the years, sort of like a strange hidden twin trapped between the layers of my dermis.  I knw this was an EVIL twin, and, after swearing off doctors for about a year, decided to give someone else a chance to play ‘Guess the Disease.’

Dr. Yona (of course, not her real name) is not just a board certified dermatologist, she is a MD, PhD, who teaches as NYU on Thursdays.  Dr. Yona was very straightforward with me after hearing my long tale of woe and disbelief.  “You deserve a diagnosis.  I believe this is a form of cutaneous lymphoma called Mycosis Fungoides.  It is very hard to diagnose. It’s not surprising you haven’t gotten an answer after all this time.  I’m sending three biopsies to two different labs to see what comes up.”  I left her office a little lighter than when I went in, albeit, unable to sit.  The best place to do a biopsy for this disease, it turns out, is where the sun don’t shine, and she made sure I wouldn’t be able to sit on either cheek equally.

After I was gauzed and covered, I was told to make an appointment to have the stitches out.  “It has to be the Monday of the week before Pesach, I’m sorry!” The office staff is mostly made up of wig wearing Jewish women, like Dr. Yona herself.  Do I feel out of place with my tichel?  No, I feel sorry that they have to wear someone else’s hair on their heads…but I digress… I’m given my 2 week followup and am told “Unless it’s something bad, we’ll tell you the results of the biospies when the stitches are removed.”  That seems reasonable.  I’m given some Aquafor to use on the biopsy sites and sent on my way.

I really didn’t think about the fact that really, there was no “good” answer for my rash.  Either it is a horrible rare cancer, a horrible blistering disease, or celiac disease in my skin.  None of those are really fantastic choices.  I was hoping for the easiest to manage–the celiac in the skin–but then I ate some spelt pretzels and nothing happened.  Dammit.  I knew it wasn’t the blistering disease.  In my heart, I knew it was cancer.  Again.

All was going fine and well.  My dear hubby helped me clean my biopsy sites since I really do not have my head there as I’ve been accused of in the past.  Things were healing nicely, till Sunday, when the doctor’s secretary called.  “Good morning, the biopsies are in and Dr. Yona wants to speak with you tomorrow.”  Shit.  That isn’t good.  Since I’ve entered the world Cancerific, I’ve had a few Sunday calls.  Never has one of them been good.  Unfortunately, I’m booked that day, so I have to make the appoinment for Tuesday afternoon.  Uff.

Tuesday morning.  I give one of the worst lectures of my life.  I’m off because I’m nervous.  While I’m watching the clock count down till 1 pm, the appointment time, I get a text from my faux daughter.  This lovely lady came to visit me when I was in the hospital in September.  She is so thoughtful, someone thought she is my daughter.  Now she just pretends and I am so blessed.  Text reads…” Do you want me to come with you to your appt?”  I’m telling you, this woman is from Heaven!  Of course I want her to!  She also agrees to pick me up, sit with me in the doctor’s room while I’m given the bad news–it is a form of CTCL called Mycosis Fungoides–the least desireable of all my options– to take notes, hold me while I cry, and drive me  home.  Truly an eshet chayil!

I’m not entirely sure what happened after I was told I’m cancerific again.  I got home, broke down, sent Hubby a text that he had to come home, then I stayed in bed and woke up today.  Dr. Yona is supposed to talk to the expert today or tomorrow so we can stage my cancer and discuss treatment options.  I appreciate all prayers, no matter the language.  He hears them all.  Jokes, too, because based on this story, He has to have a great sense of humor!

Love,

Miri

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Here we go again.

“I just found a big lump in my breast tissue area. HTG. I don’t know who I call.”

My husband received this text this past Monday, erev 9 b’Av, the saddest day in Jewish history.

“Oy. Call a doctor.” he texted back.

What the Hell else could he say? He’d been through this so many times before. Then there was that one time it was Cancer. What do you text to a person that had breast cancer, got treated, then, after it was supposedly all gone, thank you very much, found a lump in the remaining breast tissue hiding under her arm?

“Tough break, 4 u!” (This is just a fictional example! Please don’t be getting all angry at anyone, real or fictional!)

“Wow, that sucks! You always did have huge hooters, no wonder it was hiding!”

“Seriously? I had my dress picked out for your NED party! And it is not returnable! And yes, I got a great deal!

I’m going with choice 3. Monday (today) I will have a sonogram and MRI, since I have no mamms to gram. This is the imaging of choice for my mastectomy sistas out there. Get your mammograms and MRIs, people with breasts! And, as they say in the NYC subway, ‘if you see (or feel) something, say something‘. Word. I found my original cancer by fondling myself. It’s a good thing, too, because no one believed me at first (this is the subject of another blog post).

This time, however, no time was wasted in getting me an appointment with a Harvard educated breast surgeon, Dr. Red Stripe. Although Dr. Stripe assured me that chances of recurrence in a person with Stage 0 cancer, she also indicated that in my case (my history of other cancers), we need to err on the side of caution and get some imaging done, especially because this thing is in the little breast tissue I have left,
hiding in my armpit, called the Axillary Tail of Spence. The ATOS is the perfect place for The Guys In The White Van to plant their evil Cancercerific seeds.

“Ok, I have a sonogram and MRI on Monday.”

My husband received that text this afternoon. What I’m really hoping for is that he receives this text in a couple of weeks or so:

“Sono and MRI done. Sonograper (is that her title?) says it is nothing to worry about”

Then, about a week after that, he’ll get this one:

“Dr. Red Stripe says all is good! I’m NED!”

After all, I already have my dress.

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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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