Communicate, Before it’s Too Late!

 I go to the Spa tomorrow for a check up, but I just realized how sick the Crestor, a medication I take for the side effects of my chemo, was making me. This past week I was so weak I couldn’t walk to our corner restaurant (we live in NYC and walk EVERYWHERE). It was something like a 115 heat index, and I blamed it on that. My pee changed color. It didn’t get “dark” like it says in the side effects, so, eh, I blamed it on that. My back and legs hurt, my legs were weak, but I was working on a writing project and sitting all day and blamed it on that. I thought my eyes looked a little weird, but, eh, I am probably seeing things. I also had terrible stomach pain in my upper abdomen, right under my rib cage. I blamed it all on the Targretin, as well as my sour mood. 
Then something magical happened. I ran out of my Crestor and forgot to refill it (I was forgetting things A LOT, but, eh, chemo brain). The day I was off it was magical. I cooked for the first time in a month. I put on makeup. I went for a walk. Then my husband researched the side effects of Crestor and realized I was having a really bad reaction to it, as I did to the Tricor. I tried to call my oncologist, but, of course, 5:01 on a Friday, they were out of there. I called my neighborhood pharmacist who told me to stop taking it immediately, but to be sure to see the prescribing doctor as soon as possible so my triglycerides don’t get out of wack. 
During this time, I also shaved my head. Well, I used the clippers on my head, #8 setting. I found at least 4 lesions I’m sure are malignant. They look like melanoma. I’ve had it before, and I hope I’m wrong, but my hair has been concealing these lesions. Tonight I might redo it with a #4 setting so I’m sure the dermatoncologist will see them. 
Now, why didn’t I call the doctor right away when I was feeling sick? Because I’m afraid of speaking on the phone, especially to doctor’s staff. I’ve been in the office many times when I’ve heard nurses or whom ever is on the phones sigh and make unkind comments about whomever is on the other end. Unkind comments about a patient who has cancer. Because of this, I prefer to use the patient portal and email the symptoms to the doc. However, last time I did that I got bitched out by the nurse. Twice. She called me to yell at me and responded to my email and yelled at me. Maybe not yell. But certainly not professional. 
I have a PhD in communication, and I have studied patient-caretaker communication. You’d think I’d know better. Tomorrow I will be presenting my list of symptoms to my oncology team. I will also be presenting my analysis of the patient-gatekeeper (receptionist, nurse, etc, the one you speak to before the doctor) in the office where I am a patient. If I thought I wouldn’t be yelled at, I would have presented all these symptoms to my oncology team. Isn’t that what technology is for? This is the only place where they have technology like this, yet still depend on antiquated communication modes like the phone. It is much easier for someone with white coat anxiety coupled with communication anxiety to write an email then to call. You’ve all experienced it, I’m sure… A medical provider who just sounds exasperated on the phone… Who wants to talk to THAT?! I’d rather wait till my next appointment and tell the doctor in person, like I’ve been doing. 
In retrospect, I should have called the oncology team about a month ago. It’s when they changed my statin and I saw them last. But I didn’t know it was a bad side effect from the Crestor– I was told to expect some from the Targretin, and figured this was it. I also have a very swollen node in my groin on the same side as the melanoma looking thing on my head. I should have called earlier, but I could imagine what the nurse was saying on the other side, and just couldn’t take being THAT patient. 
Tomorrow, however, I will tell all to the doctors, and suggest they reexamine the purpose of the patient portal. It should be to communicate with patients. Thank Gd I ran out of the Crestor, or I would have never known I was having a bad reaction, and who knows what would have happened. 
So this ends on a happy note, I feel great today, and am looking forward to a trip to the city with my hubby, our last “date” before our son comes home from camp on Tuesday. I hope I will give him good news from my trip to the spa tomorrow. 
And please, if you are feeling weird, tell your doctor! That’s the take away. Don’t let yelling nurses prevent you from receiving treatment. I will continue to tell myself this until I learn the lesson.  

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Hair today…

One thing I didn’t expect to see in this iteration of The Guys in the White Van was the loss of my hair. Yes, I was told my hair could “thin,” and to prepare for it I cut my hair for donation. However, I still had a cute cut! My wavy auburn hair supported the A-line I created for myself with my cut. My beauty school training and years of doing hair let me make the most of what I had–after all, my hair has been “thinning” from the cancer for a while. 

However, this morning was different. This morning things got real. As I was washing my hair, I noticed more hair in my hands than usual. Then I noticed I have what seems like a bunch of breakage in my crown. Then, I looked down, and noticed the hair that was on my head went from my hands to the drain, off on an Atlantic Ocean adventure, greater than I will ever see. 

“But, you cover your hair! You post picture of amazing wraps! Why do you care about your hair going down the drain if no one sees it?!”

Good questions, if uninformed. Yes, ūüĎ≥ūüŹĺ I do wrap my hair, and I do take great joy in it. The same joy I took in doing hair, both mine and others.  Now, even though YOU don’t see my hair, people very important to me DO.  My husband sees my hair. My son sees my hair. But most importantly, I see my hair. My hair, still firmly in my head, helped me get through my bout with breast cancer. My thinking was, “how bad can it be? I still have my hair.”

And that was then. My breast cancer was a walk in the park compared to my fight against Mycosis Fungoides. All I really had to do was pop off the bad sweater puppets, pop on some new ones, and be on my way! That was five years ago today. Mycosis Fungoides doesn’t play that way. I can’t pop off my skin. I can’t pop out my blood. I could get a stem cell transplant, but I am years from that. Instead, we are first trying oral chemo, and I’m sorry, it hates hair. 

My first two weeks on Targretin, my oral chemo (and a vitamin A derivative), were fairly begnin. I figured out that I had to sit right after taking the medication, and besides from some dizziness and nausea, had no truly horrible side effects. But I was on a baby dose. That all changed when we doubled down, going from 2 to 4 pills a day. It makes my anxiety worse, gives me brain fog, drops my thyroid so I have to take meds for that, then raises my triglycerides so I have to take meds for that! Thank Gd I have my health, huh? It also is making my hair fall out in clumps. 

I’m told I will “get used” to this medication, and that my thyroid being low is what is making me feel crazy, not the chemo, which really doesn’t make me feel better. The last two years I had been avoiding doctors, and now I have to see two of them at least every other week. 

Yes, it is a blessing that we live in a time where my incurable cancer can be treated. Yes, I’m blessed to have a husband whose employer offers insurance that pays for my meds. Yes, I am lucky, I suppose, that I’m taking oral chemo. However, I’m seeing no blessing from The Guys in the White Van. They are taking my hair!

If I had to do it all again, someone recently asked me, wouldn’t I keep all my joys and all my struggles? The joys, most definitely. However, I do not see the joy in cancer. Lessons can be learned without the help of a potentially fatal illness. I was an excellent student. I’m ready for a test that I can study for. Leave the hair alone. 

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Cancer Dancing

So, I’ve been doing this cancer dance for quite a while, and I want to talk about things that you should NEVER say to someone who is chronically ill. While it may seem to be helpful, one must remember that the Cancer Dancer is absolutely alone in his/her dance. Yes, yes, you can empathize. Yes, yes, you can offer hope. Yes, yes, you can share what worked for other people. But please realize that even among individuals that have the same disease as I do, they do not have the same number of leisons/stage/lymph or bone marrow involvement as I. And this is true for EVERY SINGLE CANCER DANCER. 

I belong to an online support group of MFers (what people with Mycosis Fungoides call the disease. Irony is not missed on us). Even within my group of 944 members across the world (remember, this is a rare, incurable cancer) we are very careful to offer a caveat when we share a treatment that works for us. We either begin or end our posts with “this worked for me” or “I found a great lotion…” Or “YMMV (your mileage may vary).” Why? Because Gd forbid that we offer some “advice” that someone with cancer takes with negative results. Gd forbid someone with cancer listen to our ‘best intentions’ and ends up in the hospital. Gd forbid someone with cancer believes the latest pop cure handed out by a well-meaning amature oncologist (“my medical credentials? I’ve never missed an episode of Grey’s Anatomy, PLUS I have memorized every differential diagnosis from House!) and ends up dead. Because it is that serious. 

A religious leader I once followed cornered me during Kiddush one Shabbat morning after services (where I prayed my soul out to Him, begging for a guide to lead me to a place where I had healers who would figure out my illness) to tell me she was sure she figured out what was wrong with me. Because someone close to her had Munchhausen-by-proxy, this amature psychiatrist had determined while I wasn’t hurting my child (chas v’ shalom! she said!), I was doing something to hurt myself, called Munchausen, and there was treatment. When I told her my illness was in the blood and not in my head, she replied, “you’re very powerful. Who knows what you’re doing.”

I took what she said to heart. After all, she was MY religious leader. So, when a strange red sore developed near my ear, I ignored it, sure I must have manifested it myself, somehow. I ignored when it travelled down my face, all bright red and streaky. However, when my eye started blurring and redness travelled to my orbital cavity, I could ignore it no longer. Self inflicted or not, something was wrong. After an emergency appointment with the friendly neighborhood opthamologist, it was determined I had a dangerous case of orbital cellulitis infecting my eyeball. After six days in the hospital with hourly vision checks and 24 hour IV antibiotics, I was released to the care of my attending hematologist, the latest healer of that time along my journey health and hope. 

He was visibly annoyed with me on my first visit post-hospitalization. I inquired as to the change in his countenance. His response? “You were so good about following up on things BEFORE they got to this point. Why did you let the infection go so long? You could have lost your eye. This was very dangerous.” As I write this, I can still feel the lingering pain, a remnant left by the damage to my optic nerve. I still remember the look on my doctor’s face when I told him someone I loved and cared for told me she though I had Munchausen Syndrome. He looked pained, and he softened, took my hand, and said these words: “If I thought for a second you were doing this to yourself, I would have scheduled a psych eval ages ago. You are a medical mystery, but do NOT have Munchausen Syndrome. I actually wish you did, because that disorder is very treatable. What you have is not.” He then offered to write a letter explaining my disorder (as it was understood four years ago) to anyone who doubted my illness. I could tell it hurt him to know people I cared about thought I was “making it up,” when clearly there was something quantifiably (his words) wrong with me. “This is in your blood. I can show you your bloodwork. Living with such little sunlight isn’t helping your case at all. I wish you were making this up.”

I went back to my mentor to tell her I had been hospitalized because of her words, and had almost lost my eye. I let her know how dangerous it is to offer pop medical advice. I also let her know that while I forgave her misstep, I would never forget that I received dangerous medical advice from a community leader. She cried, and while I am sure she was sincere in her apology, I no longer follow my religious leaders blindly. Because doing so almost literally left me blind. 
So, if you happen to have a Cancer Dancer in your life, be kind. Be sympathetic. Be loving. But remember, even if you have the same disease, you will never, ever experience it exactly the same as your fellow diseasee. Unless you are that person’s oncologist, do not offer medical advice. Even if it worked for your cousin’s best friend who also had cancer. And above all, remember, we have cancer! Cancer sucks, and in the case of my cancer, it will never be cured. So, be gentle as you watch us twirl and twist our way through our cancer dance. Be there for us, and please, don’t let us fall. And above all, never, ever be the one who causes us to fall. 

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Mr. Lesion says, “Have a Great Day!” Or: Memes that Fail Miserably¬†

So, this morning, after my grades were submitted, before the next onslaught of things I have to do on a deadline, I decided to chart the progress of Mr. Lesion. Mr. Lesion lives on my left leg, just below the calf, half way between the Knee territory of the front and the Calf territory of the back. I am covered in lesions large and small, but this one has morphed and changed the most. It’s also been ignored the most. 

This morning, however, something miraculous happened! After a sighting with an angel lisence plate (see below) yesterday, admonishing me to “LUVURSKN” I decided to be kinder to Mr. Lesion. I gave him a name, first of all, because, my goodness, he’s been along for the ride for a few years now. Like the child who was never born because of an early miscarriage, I’m reminded of Mr. Lesion often. I often think “what if?” And like the doctors told me way back then, “it was hardly anything, nu…” it was something. Mr. Lesion never leaves, though. He stays and grows and morphs.

 I introduce him to so many “experts.”  

“That certainly is strange.”

“Wow. How long have you had that? It’s probably nothing.”

“Stop, if you keep looking, you’ll find.” (WHAT???)

But no, I am being kind. And guess what? I was rewarded! This morning, Mr. Lesion has morphed more! Now he looks like a smiley face!

So, there ya go! Your new meme! Let’s treat Mr. Lesion like the star that he is! The experts at the Emerald City will dance with him soon enough! 

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Hadassah Chaya, Cancer Queen x3

I know I’m supposed to be all strong and lemonade-y (referring to the Beyonc√© 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!



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