Post Whipple, post chemo follow up

I haven’t written anything in awhile, but it’s hard to sort out in my mind what I want to actually say when I tap on the keyboard forming word after word until it unfolds like a sentence that makes everything so definitive.

When you have anxiety and panic attacks, well, your mind churns out scenarios by the millisecond and none of it is pleasant. For a moment, after my mother’s eighth chemo treatment (4 post Whipple), I was riding high, I was untouchable, everything seemed to fall right back into place as if a clock started ticking counterclockwise. My subconscious, on the other hand, is determined to not let me forget, it would only conjure all my worries and fears. It was good at that. I don’t sleep. I mean, I have always had a problem with insomnia, but I find myself sinking into my pillow, as though I’m on a cloud, but on a cloud in the middle of a thunderstorm. My mind usually drifts towards my mother, sensing that she’s awake too; worrying just like me, alone with our thoughts, five minutes between us, laying among the darkness that lingers in the room. Her voice echoes in my mind, she’s always saying, “I get tired of talking about this, it’s all I do” I tell her that it’d be difficult to think about anything else, and that it’s okay that she does. But I feel like she still thinks she’s a burden. I remind her that cancer is a burden, she is not the burden.

We usually talk on the phone at the same time every day, for an hour 2pm-3pm. It makes everything seem normal, like nothing has shifted, it makes me forget our “new normal”.

We like to go to the casino and gamble a bit, not too much-$20.00 or sometimes we slip an extra $1 or 2 hopeful that we’ll leave there with a little more than what we started with; hopeful that we will have beat the machine.

My mom had her first follow up appointment since her last chemo treatment yesterday, the doctor told her that her cancer marker (CA-19-9) looked good-it was 11. My mom didn’t think so, and my anxious mind didn’t hesitate to want to fire questions until the fuel had run out.

“Oh no, it went up” I could hear the strain in her voice. My ears were burning. My entire body was getting hot and my face was turning red. Six weeks post Whipple, her cancer marker was 5, then 7 and now 11. The doctor assured us that it was fine. She said, “You could come in here tomorrow and get blood work and it may be lower” and “A man had cancer that metastasized, and post chemo his numbers went up but nothing was found on the CT scan.”  But of course I had to google it. And of course, I must have found a dark path that led me to what seemed to me to be the dark web. What I was finding online was like walking along the edge of a skyscraper in complete and utter darkness.

I did get in my car after that, and cried what felt like water drowning me. The new normal has yet again emerged. Follow up appointments, CT scans, bloodwork, wondering, worrying, praying and praying, feeling at times, God, my dad, my grandma, grandpa, and best friend were with me trying to ease my anxious thoughts and asking for me to have faith. It is so scary though.

I want to go away on a little trip with my mother, just me and her. I’ve never taken a trip where it was just me and her before. She loves beaches, so we’re trying to decide Florida or Cape Cod. I’ve never been to Cape Cod, so that may be the place. Today, during our phone call, we talked about all the places we’ve ever dreamed we could go. Greece, Australia, Italy, Hawaii, Ireland were the top choices, but she said that now, and the older she gets, the places that she once dreamt about going seem so distant and left in the past. Now, she said, “I just want to go to a beach”.

Whipple Procedure

My mother had her surgery -the Whipple procedure- 5 days ago. The surgery started on time, at 7:30 am and ended around 3:30 pm. She was in the recovery for 2 hours before they moved her to a room closer to 6 pm. The surgery was 8 hours long due to the tumor being near a major artery. The doctor explained that he took a vein from her groin to somehow connect it to well…medical jargon. But the important part is that he said he got the entire tumor out. He said, “it went super good”, and that he, “got it all”. She has to follow up with him in 1-2 weeks to go over the pathology results and will decide the next step from there.

The next morning, around 9 am she had already gone on two walks around the hospital, drank some water, broth, and cranberry juice. Around lunch time, she ate fish, carrots, and mashed potatoes. Shortly thereafter, she started feeling nauseated and throwing up. Not really sure, if it was the food or the pain medicine that someone gave her without her consent-(but not going to get into that here). She threw up three times -bile-the nurses took it to test it since they said that it wasn’t normal…totally not what my good ol’ google education taught me.

Me and my stepfather stayed with her the throughout the night. It took awhile to get her some Zofran-almost 4 hours or so, and until they finally came with that, she could not sleep. I kept bugging the nurse because I felt so awful-it’s difficult to watch someone suffer without being able to do something about it. We stayed up the entire night making sure my mom was comfortable; adjusting her pillows and blankets as needed, helping her get to the bathroom since she was a fall hazard, cooling her down with a cold washcloth. I must admit, I’ve never seen my mother so vulnerable before this, but even when she’s vulnerable she’s a fighter. My mother amazes me.

After that last meal, they decided to put her back on an “IV diet” for the rest of the night and throughout Thursday. My stepfather stayed with her again Thursday night. I got to her room around 12 pm and she had already gone on 3 walks, was back on solid foods, and as she puts it, “she’s just a little sore”. The doctor and his physician’s assistant removed the drains and IV and any medicine she had to take was administered orally. She was also given a shot, (which my stepfather had/has to give to her), and will have to get for the next two weeks to prevent blood clots. She is also taking Imodium for diarrhea and Pepcid to prevent ulcers.

I stayed the night Friday night, and by 8 am on Saturday, her birthday, the doctor gave her the good news that she was ready to go home.

Everything I have read on the Internet about this cancer thus far, has not applied to my mother. While anxiety still lurks, I do realize and appreciate that everyone is different, and now know that the Internet’s sad stories overshadow the individual victories; small or big.

Coping With Pain and Worry

I wrote this staring at this white blank space on wordpress, and I didn’t really worry about editing it….In fact, I couldn’t even come up with a title and I’m going to bed to try to at least fall asleep….

“You look like you lift…” (I heard this in the gym a few times)
Really? Well, I do…
Can you see the pain; the bruises, the deep nest that anxiety and most recently, depression, has burrowed itself into?
You look like you lift
Thank you, because underneath I feel like I have to lift this burden off my body every single day
It feels so heavy, and I’m so tired so battered tethered and worn
Oh you were talking about weights
Weren’t you?
Every day I struggle to lift; to carry the pain that recklessly pulls at my core
As I desperately try to cover up and hide
(I’m) Not willing to unveil the demons that fuse the flames between the angst and desperation that wrestles inside of me
I lift in my sleep
I lift the pain, I lift the emptiness;
The chaos that corrupts my entire being
I lift when I awaken and when I am dreaming
There is no calm there is no storm
It’s all in mind, but then again it’s really not
It’s physical and I keep lifting
I keep fighting
I keep lifting
Internally; externally my body won’t even let me shut down
I fear the worst, I fear the least
I fear FEAR
But the fear is deeper than me
Damn It
It’s a curse
But every day
I lift
Every moment of every second
I lift
And therefore
I become stronger
I become able
I become willing
I can lift more, I can see more, do more, live more
So yes, you say, “you look like you lift”
And physically, emotionally, mentally
Yes I do. I do lift
My body reflects my fight

I give it all I got, I leave all of me behind…

I grasp the iron, contract the muscle, divert the mind

reaching for something that weighs heavier than what’s inside of me; heavier than what’s trying to suffocate me; something that reminds me that I’m still alive; vulnerable, yet in control…

Tonight, I was sitting on the floor with a barbell weighing 275 pounds preparing to do hip thrusts, when I awkwardly made eye contact with a girl who was obviously talking about me to her friend. At that point, I was exhausted, but still wanted to push that amount of weight, but I just couldn’t; my mind unraveled the worst….

She was probably seeing the weakness in my eyes, or that the fight in me was fading…

I did feel broken and detached, and with that barbell hovering over my hips, I just couldn’t seem to make my mental and physical self connect.

I sat there feeling like I was no longer in control.

I decided to at least unload the bar down to 205 and completed a set. 8 reps and I was done. I couldn’t stop sweating, I was burning up, and my heart was pounding hard. After putting the weight back (of course), I was leaving the gym, and the girl who had been watching me, made eye contact with me and quietly said, “Every time you’re in here, you’re always killing it in the gym”…..

That made me smile. That made me feel vulnerable, but only for a little while.

Tomorrow is my doctor’s appointment with the endocrinologist….

Depression: I Can’t “Just Get Over It”…Yet

I remember when I started this blog. I wanted to fill it with everything fitness…and I still do, but I’m really struggling. I haven’t wanted to burden anyone’s eyes with words of sadness or dismay, but everyday for the past couple months has been a struggle, so hoping this will be therapeutic….

I am not where I want to be, nor am I who I want to be…

I haven’t done any cardio for weeks (almost a month), In fact, I haven’t really done much of anything, except fighting some darkness, and trying to find the light that once ignited the fire deep within me. These days, it’s all it takes for me to get out of bed. I’ve had more off days from the gym than I’ve had since I started this journey about 5 years ago. However, when I do get there, I go heavy. .

I go heavy to push all that darkness out of me…

But when a new day begins, I’m plagued by the same demons.

It’s no secret that I’ve suffered from anxiety and panic attacks for the same amount of time I started going to the gym. The gym, the weights; the control it gave me, molded my purpose, and made me fight harder than I ever knew was possible. It showed me what I was capable of and chipped away at a lot of fears and buried a lot of doubts I had about myself; about life, my purpose etc…

Fast forward, when my best friend of 16 years, passed away at the end of July, and I suddenly felt alone. I went to Las Vegas a week later for an already paid vacation and I couldn’t shake the invasive thoughts of how, I, too was ready to die.

Honestly, I don’t know how I made it through that week. 

But, Vegas, I guess was a distraction. It felt different. But I felt different. I felt that it wasn’t me who was experiencing the things that surrounded me; I felt like I was just existing, and all these things; the lights, the photo taking, the eating, the laying out in the sun, just happened to be occurring, with each breath I took, every step,and with all of that, I was stuck with an extremely deep and penetrating pain and void…

And it only got worse when we came back from our trip. I was forced to deal with the reality every time I felt pain and went to pick up the phone to call her, and suddenly realized that she wasn’t ever going to be there to answer, and all I had was a voice mail from her, but I wanted so much more. I started eating like shit, my obsession with the gym was waning, and social media just became too painful to log on to.

All of it seemed like a waste of time; a vacant place to unload a false perception of my reality.

And I certainly didn’t want to socialize or interact with anyone else in person. I was being buried and I didn’t want to fix it. For once, I didn’t care to fight, to fix anything, I just wanted to shut down and sleep. I’ve suffered from acne since I was 16 and at this point, the medication that had gave me clear skin and helped my confidence was suddenly ineffective. My face was breaking out like I was 16 all over again. I was embarrassed, I felt ugly, and I was sinking into a further depression, especially when my reflection in the mirror would point out 5 or 6 more pimples to look at. And I couldn’t stop crying over the loss of my friend. I was grieving and feeling desperate…

Finally, I went to my primary doctor for help.

She ordered blood work to test my hormone levels as well as my thyroid and vitamin d levels which all came back normal, but after feeling around my thyroid, she requested that I also have a thyroid ultrasound done. She found a nodule and all I could think was the worst. Of course, I researched what it meant to have a nodule, and grew even more scared and anxious. And where I once was following a more flexible diet, I cut out all dairy, sugar, and processed food, hoping that it would make me healthier. That maybe I did something to my body; I caused this. I did this to myself…

I’ve always struggled with insomnia, but now I would lay awake until 6 or 7 am. Every night is plagued with worrying, crying, panicking, feeling my heart race, my whole body shake and perspire, I want so desperately to just be able to close my eyes and fall asleep that when I finally do, I don’t want to open my eyes to feel the pain.

In the past couple days, I’ve received two phone calls: one confirming that I have a nodule and one to to schedule the appointment with the endocrinologist, and now I just want to sleep even more to forget.

Funny how I sit here and as, I write this, I wonder what happened to me? What happened to that woman who fought so hard for strength and the freedom from the terror of anxiety and panic attacks that make me feel confined, institutionalized within my own mind. Where I once started to stand strong, I have now crashed. I am at my weakest. I am vulnerable; I feel shattered, broken, and stumbling over my own thoughts. Yes, I feel I’m at my weakest point. I’ve allowed the intensity of my emotions and circumstances to grow and wrap snug around my neck much like a venomous snake.

Depression is real. You may not be able to see it, there may not be blood tests to determine that you have depression, there will be people who don’t understand it, who think it’s made up or you’re just doing all of this on purpose, or for attention. There will be people that will tell you to ask for a higher dose of medication, more xanax, more ativan, more of anything that will numb you. But what is forgotten is that not all depression is “fixed” with medication. Going out more, socializing more, or getting out of bed is not something that will “fix” a depressed, anxious person. It’s bigger than that. In fact, it is quite similar to a venomous snake wrapping itself around your entire body and mind. It’s not a phase and it doesn’t matter if you are attractive, rich, drive a nice car, or live in a huge mansion, depression affects everyone. It’s just unfortunate that there are some people who don’t understand it and make ignorant comments that only causes the sufferer more pain.

Trying to rationalize a person’s thoughts or behaviors is not helpful. Making a statement such as, “If you’re going to live this way for the next 30 years, you might as well kill yourself” is not helpful. (Yes, I had someone say this to me) That’s just toxic. (Maybe if people weren’t so callous with their words, people suffering with depression and anxiety wouldn’t hide away and shut down.) Your anger at someone’s depression or anxiety isn’t going to make the person “snap out of it”.

Things that are helpful are:

1.) Letting the person know that although you may not understand, you are there for them when they’re ready.

2.) If the person tells you that they’re not suicidal, don’t keep bringing it up.

3.) It’s okay to worry about the person and only natural to want to help, but don’t take it personal and share your anger. It does not help at all. It only makes the person feel even more hopeless and depressed.

4.) You are not a therapist, or a doctor, leave the treatment plan between the patient and their doctors. What worked for you, may not be what will work for everyone else. Everyone experiences depression for different reasons and sometimes there’s actually a reason.

Any thoughts or suggestions, please leave a comment.