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GASOLINE and a MATCH

While waiting for the physician assistant to the oncologist, I’m pretty confident I heard this happening in the hallway just outside the exam room door. Medical professionals don’t like me. I know this, and I am A-okay with it. It’s not a popularity contest, it’s my life.

Making beeline for the chair, so he can sit facing the computer, the PA says, “Hello Ms. Phillips. Your blood work looks great. Your most recent mammogram was fine. Let’s take a listen to your lungs… deep breath… fine.fine.fine.good.good.good… Okay, so let’s get you on the schedule for 6-months from now.”

Then it was my turn.

“Are you going to ask me how I’m feeling?” And “Can I get a copy of the blood work?”… waiting… printing… printing… waiting… and then… “I notice over the past three months a trend of elevating neutrophils percentage, lymphocyte count, calcium, and LDH (Lactate dehydrogenase). Today’s blood test shows Alkaline Phosphatase is also elevated.”

And then it was his turn.

He wasn’t listening; he was thinking of the next thing to say. “It’s clear you have Fatty Liver Disease. Ms. Phillips, I have other patients waiting. You’ll need to see a general practitioner about your liver.”

What he didn’t say out loud but the message was heard loud and clear: I know you just spent 45- minutes waiting for me, but after our 7-minute visit, I’m done talking at you.

In his medical notes from our “visit”, the PA wrote that “[The] patient expresses a great deal of anxiety and concerns about her labs…” and “She does not report anything specific other than a very unwell feeling…” And in then “…patient became increasingly upset and was not pleased with the care I provided.”

What he didn’t write in his medical notes, what he conveniently ‘forgot’ to include was that all my other liver enzymes were fantastic, that the Murphy’s sign (test for gall bladder inflammation) was negative, and that I had no other physical symptoms of liver disorder. He also chose to omit that he constantly and consistently talked over me, cut me off, and ignored my questions.

MEDICAL GASLIGHTING is when healthcare professionals downplay or blow off symptoms you know you’re feeling. Instead, they insist the symptoms are psychosomatic, such as anxiety, depression, or hormones. There’s still this pervasive belief in the medical community that anytime a woman complains about her health, it’s either related to her hormones or all in her head. As recent as 2023, research shows that women get diagnosed with cancer 2 ½ YEARS later than men. But that’s not all- this same study discovered that women were diagnosed later than men in more than 700 diseases.

Let’s review the facts.

I wrote a letter to the founder of the New Mexico Cancer Center, who happens to be a woman. No, I have not heard back (yet), but the letter was more for me than for her. The final sentence really said it all:

Visiting a medical professional is supposed to offer a sense of relief, a peace of mind. If your patients leave feeling more upset, more scared, more frustrated, disregarded, ignored, and disrespected, then New Mexico Cancer Center- you have failed us. You have failed me.

I will not stop advocating for myself because I am not a hypochondriac and neither are you.

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Breast Cancer, Chemotherapy, Lymphovascular Invasion, mastectomy, Oncotype, reconstructive surgery, Tamoxifen

I’ve Lost My Marbles

These days breast cancer treatment is like going to In N Out Burger. You can get it tailor-made if you use the secret language. Those in the ‘know’ sound like this:

“I am HER neg, PR/ER positive”

“I found out mine is triple negative”

“What are your staging numbers?”

“PT2CN0.”

“BRACA neg, which is good”

You thought that was confusing? Try navigating through the treatment plan options. If your lymph node biopsy is positive then you do not pass go nor do you collect $200 dollars. That will get you a pass straight to Chemotown. Since I was diagnosed as “node negative” (layman interpretation: the cancer cells enjoyed my ladies so much that they didn’t want to leave), the next step was Oncotype testing. The doctors used this test to decide the rate of exchange between breast cancer recurrence and chemotherapy. Pick a door. Any door.

Door #1-17 Oncotype Score:  “Get Out of Town” free pass.

Door #32-100 Oncotype Score: Welcome  to Chemotown! Sit back and relax. You’ll be here for a while.

door 1-17               door 32-100

Door #18 – 31 Oncotype Score: Painted an ambiguous gray, behind this door you’ll find a “Complimentary Stay” gift card and a “Get Out of Town” free pass.
door 18-31

I chose the excitement and ambiguity of the gray door and was offered the “Free Stay”  and the “Get Outta Town” Pass. Decisions, decisions… what’s a girl to do?

ER/PR POSITIVE: Out of 100 cells tested for cancer, 97 of mine were found to be an unorganized mess of estrogen and progesterone. The cells love me so much instead of dying off and growing, they just wanted to stick around.

       NORMAL CELL                                                                       INVASIVE CARCINOMA              NORMAL DUCT -NO CANCER                          invasive ductal cancer

GRADE (0 – 3): The higher the grade, the more disorganized and irregular the cells and quicker they divide. Because there was a party happening, we (me and the ladies!) were given the clear cut “High-Grade, grades 2 and 3”.

STAGE (0 – 4): The higher the number, the bigger the showmanship. Being completely disorganized but enjoying each other’s company, we decided to that moving was too much of a hassle.  I had one tumor that was  1.5 centimeters. But because news of the party spread, there was a total of 6.5 centimeters of cancer growth around the initial tumor.  My lymph nodes tested negative, but I did have lymphovascular invasion, so I earned a Stage 2.

LVI (Lymphovascular Invasion): These guys know how to do it right! They turn their house party into a block party by making their own network of blood vessels. Just like the game of telephone, my blood vessels created a system of disorganized communication. The good news is that the police came and broke up the party before the phone line reached my lymph nodes. The less good news is that like any good house party, a few quick ones always escape the fun police.

lVI PARTY

ONCOTYPE DX (1 – 100): As the winners of a score from 18 to 31, the treatment is more of a “go with your gut”. The advice I got was “Your score is pretty low. But it is in the intermediate level. But your lymph nodes are negative. But you do have lymphovascular invasion. But Tamoxifen is a very effective hormone therapy. But it is very harsh on the system. But chemo is even harsher. But it might give you a peace of mind.”  Armed with all this helpful information, I was sent home to think about starting chemo or Tamoxifen.

Ever play roulette? Imagine you have a jar with 100 green marbles:green marbles

Option 1- Tamoxifen: Now, take 15 out and replace them with red marbles. Next ask a friend, spouse, neighbor or dog to blindfold you. No peeking! Reach your hand into the jar and grab a marble. It’s like the game Operation… careful not to pick red marble or you lose your turn!

Option 2: Chemo and Tamoxifen: Take out three of those little red guys to replace with the green ones. Blindfold. Rinse. Repeat. marbles

I understand we’re not talking about your mother’s chemo. This chemo is a kinder, gentler chemo.  But is it worth three extra balls to destroy my entire immune system? Is it worth postponing the ER/PR receptor condom (i.e. Tamoxifen) to first destroy all my cells? Are three more worth the possibility of permanent heart damage? For me it was a no-brainer. Didn’t even have to think about it. Decided right there, with my cancer-buddy in tow. “Thank you very much but no thank you. I’ll pass.” We left Oncology with three lucky green marbles rolling around in my pocket.

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Uncategorized

Where else but at the beginning?

Let’s start at the beginning….

9-73 Melissa;

Okay maybe not that far back….

June 2013

I was diagnosed with pneumonia. After walking around for an entire month coughing, I begrudgingly admitted I may need professional medical care. This was only after pulling a muscle from… well… constant coughing. I was put on antibiotics, which I took until the very end of the cycle (I also floss my teeth every day and come to a complete stop at every stop sign….).

July 2013

The pneumonia came back and brought a friend, pleurisy. For those of you who have never had the pleasure of meeting pleurisy, it is the inside out version of pneumonia, where fluid builds up between the chest wall and the lungs. Pair these guys together and you’ve got yourself quite a party filled with antibiotics, anti-inflammatory drugs and pain-killers.

September 2013

I explain to the doctor that although my house guests left, I still was having a difficult time breathing. Just like George Costanza’s ‘leave behind’, Pneumonia wanted to leave the door open, just a crack, just in case…

September 2013 – September 2014

For the next year, my general practitioner and I became good friends as I visited him often, through various attempts at a diagnosis: anxiety, asthma, stress, allergies, anxiety, pulmonary embolism and anxiety.

I tried to explain:

“Yes, I am anxious and twitchy, I am fully aware of that fact. Nothing new there. No more so than before I couldn’t breathe well.”

“Yes. I do have allergies, like everyone else to dust and hard work but no, it isn’t causing my shortness of breath either.”

“No. I will not step on the scale because really…. What does that have to do with my breathing except to cause me anxiety, which will cause me to have shortness of breath.”

 And then the unthinkable happened.

In September 2014

I felt a lump.

I called Annie, the Physician’s Assistant (because anyone who knows the medical community will always go to the nurses and PAs first). I had actually never met her before but was assured that she was very good. From the minute we met, I knew it was a match made in East Coast heaven. She’s someone you want to hate. As in, “Well yea…sure… she’s beautiful but what a bitch.”  But noooooooo… On top of being beautiful on the outside, she is even more beautiful on the inside. After getting felt up, she assured me that the lump felt like a fibroadenoma but, for shits and giggles, let’s go ahead and get a mammogram. I thought, “Well sure. Why not? I enjoyed it so much two years ago that I can’t wait to do it again.” Here’s how it went:

 Mammogram Day

After some smashing, tugging and pulling the nice Mammography Technician, who was all of 12 years old, said:

“Okay sit tight. I’m going to show these images to the doctor and see if we’re all set.”

“The doctor wants me to take a few more images on the left side and then I’ll be right back.”

“Thank you for being so patient. Just a few more angles and we should be good to go.”

“Do you mind hanging tight for a bit? We’d like to do a quick ultrasound.”

By this time I knew that something was up. But not in the fun way where you suspect a surprise birthday party is being planned or an engagement ring was on the horizon. After some more smashing but this time with the added fun of really cold, slimy jelly, she smiled and said, “The doctor will be right in to talk with you.” Great. As I wrote in an earlier blog, here was our conversation:

Me: Well Doc… you look like you’ve been in the profession for a while, just sayin’. What do you think?

Doctor: I have been practicing for a few years. I’ve seen this size and shape before. It’s usually not good.

Me: I have a giant in my pocket that I just filled with 100 pennies. How many of those pennies are falling out?

Doctor: I’m guessing you might drop about .65 or .70¢ on the ground. Are you going to be okay?

Me: Why wouldn’t I? I have .35¢. Now if you’ll excuse me, I have to go sew a hole and find some dropped change.

After having core needle biopsy, a teary-eyed Annie (my amazing PA) told me that I had breast cancer. A lot. At this point, if you’ve been following my blog and my affinity for Paul Harvey:

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Breast Cancer, Coping with Cancer, Uncategorized

Magic Beans and Green Things.

As a mom, when you are diagnosed with breast cancer (or really any kind of cancer), your first thought goes directly to your child(ren). For me it was more logistics than anything else.

Case in Point #1: Magic Beans

Andy picked up Nathan from school so I asked him to please stop at Marshall’s on the way home. As his fourth birthday approaches, Nathan’s butt is barely covered by the same 2Ts we’ve had since he stopped wearing diapers. On arriving home a full hour after being picked up from school (15 minutes away), Nathan ran into the bedroom where I was putting away laundry (my favorite pastime). “Mom! Look what Daddy got me! A new car!”

Fantastic. Just what we needed. Another car. But this one was not just “a new car”, but rather a new car carrier with four cars (if you’re keeping count, that’s actually five new cars). Even better. I left the bedroom in search of the brand spankin’ new big boy underwear. When I couldn’t find them anywhere I asked the boys “so where are the new undies?” Nathan jumped right in, “They didn’t have any at the store but they did have toys. See!”

Case in Point #2: Green Things

Because of an early doctor’s appointment, Andy was taking Nathan to school in the morning. While packing my bag to leave, I look over at my beautiful little boy watching PAW Patrol.

To appreciate PAW Patrol, you have to click “play” at least 20 times in succession:

Here is the conversation with Nathan, exactly as it happened:

Nathan: Mom, Daddy’s taking me to school this morning and not you. And we’re getting donuts!

Me: Are they vegetable donuts?

Nathan: What are vegetable donuts?

Me: They’re made with broccoli and other green things.

Nathan: No. I don’t think we’ll be getting those.

Me: Fantastic.

Case in Point #3: It’s Sampling, Not Stealing

The boys love to go grocery shopping. They think I don’t know, so I pretend like I don’t. But I do. It’s like going to an all you can eat buffet.

Stop 1: Starbucks – After walking through the front doors, the first visit is to Starbucks where whoever is behind the counter gives the charming Mr. Nathan a cake-pop (free.)

Stop 2: Produce – Grapes? Yes please. Strawberries look fresh but best to check to be sure. Oh look! Cherries are in season. Cherry tomatoes? They look just like cherries! I have to taste the difference! Oh, I love sugar so I’m sure I’ll just love those sugar snap peas, I just have to try one!

Stop 3: Bulk snacks– Okay so I have to give them that one. Those are pretty irresistible.

Stop 4: Seafood– After a round of high-fives, Nathan is served a sampler of whatever has been pre-cooked and read to eat such as grilled salmon, ‘sushi’ rolls or crab cakes. By the way, in case you were wondering, Nathan loves crab.

Stop 5: Salad Bar– It should be called a “deli bar” because the boys help themselves to a few bites of ham, a few peperoni slices, a cube or two of turkey and a soup sample to wash it all down.

Stop 6: Bakery – The final stop on the buffet, almost full circle from the cake-pop. While most kids get a free cookie, not Nathan; he’s been known to charm his way to full cupcake or slice of pie. More sugar you say? Fantastic.

 

Case in Point #4: Old McDonald.

Before taking off for their Bro-Date, I went through the Mom “Don’t Forget” Checklist. Did you remember: Sunscreen (we’re in San Diego, you always need it), something for Nathan to drink in the car, snacks for the car, sunglasses, wallet and car keys. And then went through the Mom “Forbidden” Checklist. Please don’t: give Nathan sugary foods, buy him any more toys, stay out past his naptime and, for the love of G-d, please do not stop for fast food.

The boys came home, all sugared-up, at 3:30; only an hour and a half late. Nathan walked in with his hands behind his back, never a good sign, and then ran into his room laughing like a boy on sugar. The best part of their secret adventure was the unique bouquet that wafted in the air and clung to their clothes. What was that enticing aroma; a mix of sugar, dirt, grease and edible chemicals? I say nothing because I don’t want to know.

But I did know. And the next day, before taking Nathan to school, I had to brush cold French fries off my driver’s seat, throw away an empty Happy Meal box and pick a straw wrapper off the floor. Fantastic.

let dad

Final Argument – Nathan loves Andy almost as much as Andy loves Nathan. Two peas in a pod. There is no one in the world I would want to raise my son without me. But if I had to pick someone it would be Andy. Now, who am I going to find to raise Andy without me?

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