Post Whipple: 14 months later

I could go into how much time has passed since my mother’s initial diagnosis or her successful Whipple procedure, but everyday gets celebrated because the overcast, while not as dark and gloomy, still casts a shadow.  It’s being grateful, feeling thankful for each and everyday; every moment while at the same time being reminded of why you are actually more aware and in tune; present in each day and moment, whereas before, like most, you just live your life not really reveling in your existence.

We went to Florida. A week prior, my mother was able to have the port removed, which felt like another step away from that overcast that came storming in so abruptly. As her C19-9 number stayed steady in 9-11 range and all her blood work came back normal, we were elated and excited to go relax and celebrate with the white sand, rolling waves, angels being cradled by a sky that’s painted in watercolor. We had stepped out of the shadow and were etched into a beautiful, serene painting that we reveled in.

Fast forward….

October 2018, follow up visit as scheduled c19-9 number was 17. While dr. wasn’t concerned and said it was normal, I was walking away with angst digging a hole in my stomach. Still, she didn’t have any problems or symptoms, so another follow up appointment was scheduled for January.

November 28, 2018 One year since her Whipple procedure. She experienced severe upper stomach pain on the right side, nausea, vomiting, which later (when morning came) was determined to be gastritis. I should add that her digestive system has vastly improved by this time, and she was able to add a few more foods once in awhile without problems.)

January 16, c19-9 elevated to 46.  Dr. proceeded with follow up questions regarding any symptoms or problems that she might be or have been experiencing. CT Scan scheduled for January 21. Liver enzymes and all other blood tests were normal.

Results of that CT scan: Found a a spot on her liver less than the size of a penny. Liver biopsy ordered and scheduled for January 29.

I realized as I was writing, that I felt like I was a med student writing notes on a patient that was unfamiliar to me. I guess I just feel so numb from all the anger. And although I feel th, I also feel Florida.

I guess it takes awhile to get the results, but we’re all hopeful that it’s nothing serious. However, and of course, I took to the internet to try and summons up what Google could offer me and decided to go the route of research articles (granted I don’t have full access to a lot of the articles based on the topic of liver lesions and Whipple Procedure) I read an article Case Report Asymptomatic Liver Abscesses Mimicking Metastases in Patients after Whipple Surgery: Infectious Complications following Percutaneous Biopsy—A Report of Two Cases (I read more, but this is just one)

Of course, I’m not that naive to rely on the internet for a medical diagnosis or answer, especially when you have to actually be a doctor to access a lot of the research sites. However, one thing, I do feel angry towards the doctor who I feel should’ve ordered a CT scan sooner. I have notes saying CT scan follow up 4-6 months from the date of Whipple procedure, but I guess they’re going based off the cancer marker number and her symptoms. I think I’m always to have this major distrust towards doctors. I’ve come to feel that they don’t try to stay ahead of any health matter; there’s no urgency unless you are your own advocate. And even then, between insurance companies and various medical hats in the ring, are you really your own health advocate? However,  I also realize that since this extremely personal and important to me, you know, because it’s my mother, that I’ll never believe that they are ever doing “enough”.

 

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”.