Cancer

All posts in the Cancer category

Progress

Published May 24, 2021 by Malia

I’m starting this post with a Trigger Warning for suicidal ideation. I’ve been debating writing about this for the last few days, and decided to go ahead with it. As always when I write an out this stuff, I like to include the following reminder: Call the National Suicide Prevention Lifeline (Lifeline) at 1-800-273-TALK (8255), or text the Crisis Text Line (text HELLO to 741741).

Well, it’s been a full week since the official diagnosis of the Big C.

I wish the C stood for “Cookie” in this case.

It’s been a week of processing. I’ll admit, I’ve been very surprised by how much grief I’ve been experiencing. I know I mentioned the grief last week, but I’m still surprised by it. The worst part of processing grief? It’s not linear.

Everyday seems to come with a different feeling. I’ll have a day of sadness, followed by a day of anger and bargaining, followed by sadness, followed by acceptance, followed by sadness. Been feeling sad quite a lot of the time. However, I noticed something on Saturday.

Through all of this, I have not experienced a desire to unalive myself. Usually, when I’m going through high stress, my brain begins this attack of constantly telling me that it would be better if I wasn’t here. That the pain and stress would go away. I spent most of May 2020 through January 2021 dealing with my brain constantly harassing me to just be done with life. It was exhausting, and part of what ultimately led to me deciding not to return to my job.

I’m not saying that I’m cured. I don’t think I am. But I do take it as a positive sign that I am making progress with my mental health.

I’m not okay, and that’s okay.

Published May 20, 2021 by Malia

I went to therapy this morning.

I hadn’t been in a few months, and I realized on Monday, after getting Tom’s official cancer diagnosis from the doctor, that I really needed a session. 

I’m just so overwhelmed by my feelings at present. Since I have a really bad habit of refusing to acknowledge what I’m feeling and just squashing them down deep inside, I’m trying to break that.

Here’s the thing about therapy. I appreciate it. It’s been amazingly helpful. It is not fun. I don’t walk out and immediately feel better. But there’s something about sitting in a judgement free zone, talking about what I’m thinking that really makes a difference.

I’m learning that it’s okay to feel all the feelings. It’s okay to be sad or angry or frustrated or any other emotion that sweeps over me. It’s okay to acknowledge those feelings and give name to them. The important thing is what I do with those feelings.

I think it’s important to point out that just because I’m facing some dark feelings, that doesn’t mean I’ve lost hope or my faith. I’m still reeling from feeling blindsided by all this, plus I’m grieving right now. I’m still dealing with some grief over my old job. I’m grieving my lost babies. I’m grieving putting dreams on hold. And I’m grieving Tom’s kidney. I’m sure that sounds absurd, but that’s just how things are right now.

So, what about Tom? He’s always been incredibly supportive of me getting mental health help. He knows that I’m equally supportive of him seeking help. But doing so is a very personal choice. So, I check in on him regularly, and the door is open if he decides he does want to talk to a professional.

Things are hard, but we will get through it.

Not the worst news…not the best news…

Published May 17, 2021 by Malia

I know, I don’t usually cuss on this blog, but I think I’m allowed to today.

It’s officially cancer.

The doctor called this morning with to inform us. Tom has the most common form of renal cancer, and it is pretty aggressive. It had begun moving out of the kidney.

That’s the bad news.

The good news is that the margins were clear, so the doctor is very hopeful that they got it all.

Tom’s surgery follow up appointment isn’t until June 1st, and I’m not really sure what more we’ll learn then than we already know. We’ll be spending the next five years having him get CT scans every six months to make sure he’s still in the clear.

Today feels extremely surreal. I am glad we have answers. I knew we were likely looking at it being cancer, but there’s a difference between suspecting and officially knowing.

You and me both, Wanda You and me, both.

Twister is now 25 years old. I’ll let that sink in for a moment.

Published May 16, 2021 by Malia

I’m really surprised at how fast Tom seems to be recovering. I don’t know if it’s because in the past every family member I helped care for post-surgery/coma weren’t as young and healthy as Tom, or if it’s because the robotic surgery is a little less traumatic than traditional surgery. Maybe it’s a combo of both.

On Thursday, after the surgery was complete, I met with Tom’s doctor who informed me that everything went as expected. Immediately after, I went back to the waiting area and I made the mistake of sitting down for a moment to collect my thoughts.

And then I tried to stand up.

All of a sudden, the sheer idea of standing up was so completely overwhelming, my body refused to cooperate. It was like a physical wall of exhaustion slammed into my body. I ended up sitting there, texting family, “I think I live in this chair now.”

Finally, after almost an hour, I got so nauseous because of dropped blood sugar, that I forced myself up and down to the cafe for what ended up being a really delicious bowl of udon noodles with chicken.

Yesterday, Saturday, Tom rested and played video games, while I worked on cards for some orders that came in over the last few days. Mid-afternoon, I got so tired I crashed in bed for a few hours.

Last night, I watched This is a Robbery on Netflix. It’s a documentary series about the big art heist in Boston back in the 90’s. It was interesting, but the music was unnecessarily creepy. I was quite glad Tom was home, since I watched most of it after nightfall.

Not much on tap for us today. I’m waiting for Amazon to drop off the new blade for my Cricut so I can finish the orders I was working on yesterday. I keep threatening him that I’m going to put Twister on because he doesn’t love it like I do, and his only escape is napping 😅

Today I am waiting…and waiting some more…

Published May 13, 2021 by Malia

Surgery is over.

Tom is still in recovery, but they’ll be moving him soon. I’m so anxious to see him.

We didn’t have to check in until 8 a.m. so we were able to get up at a normal time. Groot was not thrilled her people were getting up and she moved and went back to sleep in the funniest position:

At least, I thought it was funny how she left her butt hanging out.

Before we left, I got this magical gem of a picture:

I call this the “Paint me like one of your French girls” pose.

Here we are at check-in:

And here we are right before they took him away to relieve him of his kidney and tumor:

And I didn’t realize my mask was on upside down until way later 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️

The Buffett Cancer Center has this beautiful garden area, and that’s where I hung out until they came to tell me his surgery was finishing up. It’s a beautiful day (although there’s a chilly wind), and here’s where I got to hang:

Being able to be outside in such a beautiful garden was such a gift. It really helped my anxiety.

That’s about all from this neck of the woods. Thank you all for the prayers and good vibes.

So, medical bills are super fun…said no one ever.

Published May 11, 2021 by Malia

(The following post contains shameless self promotion)

The bills have started rolling in from the kidney cancer fun (and the surgery hasn’t even happened yet).  Yes, we do have insurance.  We’re already facing fights with them to cover things that absolutely were necessary, but they have determined were not.  Personally, I’m not sure how a CT scan to get images of a giant tumor and decide if surgery is needed can be considered “Not medically necessary.”

Things were already a bit tight, but we’ve been really careful. I’m not yet at the point that I can return to working a traditional job. So, I’m getting creative in an effort to help bring in some extra money.

Introducing my revamped Etsy shop, Made by Mannaberry.

https://www.etsy.com/shop/MadeByMannaberry

Right now, my main offerings are what I’m calling “In A Pinch Card Bundles.” The idea came to me a few months back, when I once again forgot to get a card for an event until the day of. There is little I hate more than going to the store on Sunday afternoon. It occurred to me that having cards ready to go at all time would save me from last minute Walmart visits. I realize that I cannot be the only one who constantly forgets to buy a card. Hence, the In A Pinch bundles.

Thanks for reading my plug for my shop. I promise tomorrow I’ll be back with a regular post.

Just call us Sarek and Amanda.

Published May 3, 2021 by Malia

I’m going to be very frank with all of you. I’m not in a good headspace currently. Call it a pity party, call it being overwhelmed. I honestly don’t care what you call it. It’s probably all accurate.

Since the news regarding Tom has been made public, I’ve had a lot of people in my life make comments about how we’re being so strong, and how we have such a good attitude about all this. These are all incredibly kind things to say, and I know that they’re said with love. And to be fair, I am actually feeling fairly positive about the outcome of all this. That said…

I don’t think I’m strong. Currently, I’m exhausted, sad, and beat up. I feel like Tom and I are walking around with targets on us that the universe is taking full advantage of. Kind of like that old Far Side cartoon with the deer that had a target on it and another deer says, “Bummer of a birthmark.”

Even though my brain knows that there’s not much reason to be concerned about the surgery, and I know I can’t sway the outcome one way or another by how I feel, I’ve come to realize that I’m scared about it. I’ll be so glad when Tom is out of surgery and awake.

We have a joke in our house that Tom is a Vulcan and I’m a human (think Spock’s parents). He has very little emotion about anything, and it very rarely shows up. Whereas, I’m filled with all the emotions all the time.

I know they won’t officially diagnosed Tom with cancer until they have the kidney out and had a chance to do the lab work on the tumor. I know that as far as cancer goes, we’re not facing nearly as much scary stuff as so many do. Even so, it’s scary. Really scary.

Sorry I’m such a downer today. I promise to be a bit better tomorrow.

No one expects the Spanish Inquisition

Published April 30, 2021 by Malia

This has been a day.

A few weeks back, Tom went in for a physical, and during the visit, the doctor decided she wanted him to get an abdominal ultrasound. Last Friday, he went in for one, and when he got home he told me that he needed to go back in a few hours to get a CT scan done. There was a dark spot that had shown up on his kidney, and the doctor wanted additional imaging done.

Later last Friday, after the CT scan, he was notified that he needed to see a urologist. When they performed the scan, they used contrast and found that the spot on his kidney was receiving blood.

This started one of the longest weeks of my life. I found myself hoping that whatever it was would turn put to be nothing. Just a weird artifact. The worst part, though, was simply not knowing what we were dealing with and what the next step would be.

One small thing, before I go further. When Tom explained to me what was on the scan, he said it was a “dark spot.” This did not translate in my brain the way I think he thought it did. Hence my hope that it was just a weird artifact. However, this is actually what showed up. Guess which kidney is the one in question…

If I had seen this last week I probably would’ve been far more worried than I spent this week feeling.

He has a tumor. A giant tumor. The urologist said that cancer can’t be officially diagnosed until they can actually take a look at the tumor and kidney. That said, according to the urologist so far this appears to be consistent with kidney cancer. Because the tumor is so large they are going to use the surgical robot and remove his entire kidney on May 13th.

When I was sitting on the phone, listening to Tom meet with the urologist (I had permission, since due to Covid precautions I was unable to be there in person), it was a very surreal experience. Initially, when I heard we were most likely looking at cancer, part of me wanted to return to bed, crawl under the covers, and cry. But that was only a part of me, and turns out it was a small part.

Mostly, I feel relieved. No, cancer is not what I wanted to be the diagnosis. No, I don’t want Tom to lose a kidney. So, how can I feel relieved?

1. Tom has two kidneys. And while one is basically filled with a tumor, the other is a healthy kidney.

2. According to the urologist, based on the imaging, the tumor is solely contained in that one kidney. Nothing has spread to other organs.

3. As of right now, post surgery Tom isn’t looking at chemo, radiation, or other long term meds. He’ll have regular checkups over the next 5 years, but that’s it.

4. Knowing is better than hanging out in limbo. I’m grateful we know what we’re most likely dealing with, and that we have a plan for the next month.

I don’t know what the next five years hold. And after this week, I’m reminded, yet again, that I don’t even know what the next day/weeks/months hold. So, the best I can do is continue to hold onto my faith and be grateful for every single second I get with Tom.