Health

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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.

Welcome to the Second Decade

Published April 26, 2021 by Malia

If you’re new to the blog, or it’s been awhile since you visited, let me catch you up on what life has been like.

Ten years ago, I started this blog when I moved from Nebraska to North Dakota. I was going through a bad time. I was lost and heartbroken, and I needed to get as far away from Nebraska as I could. North Dakota may not sound like the optimal place to run away to, but I fell in love with Grand Forks. By the December of 2012, I found myself moving back to Nebraska. There were a few reasons that prompted the move, but the main ones were a type 2 diabetes diagnosis and running out of money for school (I was working on my bachelor’s for the umpteenth time).

January 2013-January 2016 saw the following happen:

-I worked in a medical lab.

-I began dating, and got married to the boy. That’s how I referred to him on here for the longest time. His name is actually Tom, and to this day I firmly believe that the best choice I ever made was agreeing to go on a date with him.

-Early Term miscarriages 1 & 2.

January 2016-February 2017

-Tried being a homemaker, it was a bit of a disaster.

-We blew up our car engine by throwing a rod. This led to a giant headache trying to replace the engine. Pretty sure by the time we sold the car we had replaced the engine 4 times. Important lesson kids, always stay on top of your car’s oil levels and changes. It’s and expensive problem you don’t want to deal with.

-We were so broke, and I completely lost hope that things would ever get better. It was a really dark time.

February 2017-April 2018

-I went to work in the lab at our local pediatric hospital.

-I was sick all the time, mostly with respiratory infections.

-Was officially diagnosed with PCOS. I’d been fighting to get someone to officially diagnosis it since 2012. It’s awful trying to get female reproductive health issues diagnosed and treated.

-Decided to leave the job mainly due to my rapidly deteriorating health.

-Adopted an 11 year old Puggle. She’s my first dog ever, and she’s my baby.

-Early term miscarriage 3.

April 2018-August 2019

-Attempt #2 of being a homemaker, again was a bit of a disaster.

-Got officially diagnosed with ADHD, anxiety, and depression. I already knew I was struggling, but it was really helpful to finally have an actual diagnosis.

-It was a dark time, but also a time where I learned quite a bit about myself.

August 2019-March 2020

-Went back to the hospital lab job as a casual employee.

-My grandmother passed away.

-Early term miscarriage 4.

March 2020-Now (April 2021)

-At the end of February 2020, my job was going really well. I was getting healthy, and was finally losing weight. I was on top of the world, and when a full time position opened up I decided I was ready. Let me just say right now, if I had known what was going to hit by mid-March, I would’ve never gone to being full time.

-Working in a hospital lab, during the first 9 months of Covid was a special level of Hell. Eventually, I may be able to write more about it, but I’m not mentally or emotionally in a place where I can do that yet.

-The last week of December 2020, my mental/physical/emotional health bailed on me. I’d been trying so hard, for months, to hold it together. I kept telling myself if I could just keep going eventually things would better. At 2 a.m. on 12/28 I was sitting in the shower, sobbing, and I knew I was officially at my breaking point. Months of barely sleeping, high stress, panic attacks, crying all the time, and constant nightmares when I would manage to sleep had all taken their toll. I was put on leave through January, with the intention that I would be heading back to work. I had countless doctor appointments, and by the end of January I came to the realization that there was no way I would be ready to go back to work. So, I chose my health and my sanity over my paycheck and benefits. I know I made the right choice, but it wasn’t an easy choice.

-Early term miscarriage 5.

What does the second decade look like?

I’ll be completely honest with you, right now I qualify a good day as one where I get out of bed and put pants on. Overall, I’m not doing very good. I am starting to heal from last year, but it’s slow going. Right now, I can only manage baby steps, but I’ve decided baby steps of progress are better than no progress at all.

I’ve been encouraged in therapy to return to writing, and right now the easiest writing for me to do is this blog. And since it’s important to have goals, I will end this post with a small list of goals I have for the next few years:

Goal 1: Getting healthy so that expanding our family (whether biologically or by adoption) is an actual possibility.

Goal 2: Moving The Banana Gift from being a dream to a reality.

Like I said, it’s a small list. I’ll be back tomorrow!

This story sounds fake, and had I not lived it I’d think it was.

Published January 6, 2020 by Malia

I have had bronchitis for what is beginning to feel like forever. Back in November I started waking up every morning with a really bad cough. This continued until the Friday before Christmas. That’s when I developed a sore throat to accompany the cough. That entire weekend I dealt with my voice going bye-bye and generally feeling awful. The Monday before Christmas I went to my doctor’s office, and they did a flu test, because I was showing symptoms of the flu. The test came back negative, but they decided to treat me for the flu anyway (Omaha is currently a hotbed of flu, so not an unreasonable treatment decision). Then on Christmas, breathing got so difficult I found myself in the ED, where they did chest x-rays and another flu test. My chest was clear and I was definitely negative for flu. They gave me a breathing treatment, and diagnosed me with an upper respiratory viral infection. With being in the middle of the holidays, the earliest I could get in to see my regular doctor for a follow up was last Friday (1/3). Since I wasn’t doing much better, she diagnosed me with bronchitis, and prescribed me a couple of meds, one of which needs a nebulizer. She also told me that if I’m not over this by my next follow-up, she’s probably going to send me to see a pulmonologist; which considering I have a long history of bad lung infections, bronchitis and pneumonia, is understandable.

And that’s when the drama began.

About an hour after the prescriptions were sent in, I got a call from CVS letting me know that they could fill the all the meds, but they didn’t carry nebulizers. No big deal, I thought. I left a message for my doctor regarding this, and went to work. Mid-afternoon, I received a message from my doctor that she’d sent my nebulizer prescription in to a local pharmacy. Since I worked until 9:30 that night I was unable to go pick up the script.

Saturday morning, I decided to call the pharmacy to see if the script was ready, since I didn’t really want to drive all the way across town to find out it wasn’t. When I called, they informed me that they had received no prescription, and therefore had nothing for me. Baffled, I hung up, and sent a message to my doctor so she’d know what was going on. I knew I wouldn’t hear back anything until today.

First thing this morning I get a message from my doctor stating she called the pharmacy, and when they looked into their faxes, they found the script that had been sent on Friday. They just hadn’t printed it out. Now they had, and they told her they were in the process of getting it put together for me.

I had some other errands to run, and when I got done, I realized I had enough time to swing by the pharmacy before my therapy appointment.

I stupidly assumed that since this was a local pharmacy that’s been around forever, it was going to be a good experience handled by helpful people.

I walked in, and there was a guy and a gal working the drop-off and pick-up area. They both appeared to be in either their late 50’s or early 60’s. On the shelf right behind them was sitting a nebulizer with paperwork tucked into the top of the box (I mention this, because it will come up later in the story). I told them why I was there, and received a confused reaction from them. The man went, “A nebu…?” As if I had uttered a foreign word. To which I responded, “A nebulizer.” He shook his head, and the woman said, “We don’t have any orders for that.”

I proceeded to tell them everything from my doctor sending the script to the fact she had called this morning to find out why they hadn’t received it. I told them she was told it was there and being put together for me. I offered to give them my doctor’s info and the clinic phone number so they could verify what I was saying. Instead they asked me if I’d ever been to their pharmacy before, and who did my doctor talk to this morning. The answers were no, and I have no idea. The guy then pulls out this pile of papers and starts rifling through them, which leads to he and the gal getting into an argument because these are the faxes from the last two weeks and no one’s gone through them yet.

At that point I seriously considered walking out, but instead I pointed to the nebulizer behind them and asked if that was the paperwork they were looking for. Neither one even looked, they just informed me. “No, it’s not.” After several more minutes of going through faxes and fighting with each other, I was told they didn’t have it, and was I sure it had been sent to them. Considering that my doctor had provided me with the name, address, and phone number of their pharmacy as where I was supposed to go, I knew I was in the right place. Again I offered to give them my doctor’s contact information, but they blew me off.

While this is happening, other people started coming in, and they turned their attention to helping those customers. After they handled a few people, the gal turned to me and asks if I’ve ever been there before, and could I be in their system. I told her I’ve never gotten my prescriptions filled by them, so I doubt I’m in their system.

They helped more customers.

Finally, the guy told me that they don’t have my script and he doesn’t know how else to help me. Really frustrated at that point, I told him I’m going to go get ahold of my doctor and find out what she wants me to do. He then offered to call and get the script.

I give him the info, and waited as he called. He got the info and had them fax over the script again. When he got off the phone, he told me that the fax number they sent to before is one he’s unfamiliar with. He then proceeds to try to look me up in their system…which surprise surprise I’m NOT in. I gave him my i.d. and insurance card, and he starts inputting my info. At the same time, he decides to have this other customer, who was there to return some medical equipment, come up to the same desk, right next to me to start her return process. And when I say right next to, I mean picture the bank teller area, and instead of having her go to a separate station, he had her come to the same station I was at, where all my private information was sitting out, easy to see. I snagged my stuff as soon as I could, but not as soon as I would’ve liked. Since I work in healthcare, this whole situation set off so many privacy violation alarms in my head.

Finally, he told me that once he receives the script, he’ll send my insurance info to their people that will investigate (yes, he actually said investigate), my insurance to see if the nebulizer will be covered.

After 30+ minutes of this nightmare, I finally left, and headed for therapy. This is where the story gets even better.

My therapist is based in the same practice as my doctor. I figured that I’d see if there was a way to catch my doctor after therapy, just to give her a heads up regarding the situation. As it turned out, I ended up running into her in the hall as my therapist and I were headed back to session.

Doctor: Did you see my message? I got a hold of the pharmacy this morning and they’re filling the script.

Me: Yeah, so I just spent 30+ minutes over there and they had no idea what I was talking about.

This led to me relating the entire situation that had transpired at the pharmacy. Both my therapist and doctor were equally horrified as I filled them in. Then when my doctor found out that I still don’t have the nebulizer, she was clearly upset

Turns out, this pharmacy is the one place in town she’d found that is currently carrying nebulizers. She told me she was going to call them again to see if she could get a better handle on what was going on with them, and why I’d had such a ridiculous experience.

So, now I wait…and try not to cough.