One Year Apart

The picture on the right is from one year ago today: August 23, 2017. It popped up in my Facebook memories, and I was like Whoa! I am not just 45 pounds heavier, I’m also swollen from taking steroids. (Dexamethasone is a wicked drug.) The picture on the left is one I took this morning, because I wanted a side-by-side comparison.

I don’t have a lot to say about it other than I am fascinated.

Cancer Ramblings

Cancer Ramblings

I’m exhausted. The kind of exhausted where I’m too tired to get up and plug in the cannabis vape pen that needs charging because I spent all that energy an hour ago making toast with peanut butter and a cup of green tea.

So I’m lying in bed composing a blog post on my phone instead of standing up, and I’ll ask Dan to charge my V2 Pro next time he comes in to check on me.

***

My platelets are low (64 at last week’s count) and I’ve been barfing again. No idea if those two things are related. Also, though I don’t really want to admit it, I’ve been basically bed ridden for a couple of weeks.

It’s not the cancer; it’s the treatment.

After my last round of chemo, I didn’t regain much strength. I mean, it’s always hard, but it seems to be getting harder. Could be the absence of the dexamethasone now. Could be the cumulative effects of the chemo treatments. Could be the shit-ass weather and extra migraines I’ve had this month.

That’s the thing about brain cancer and its treatments. So many potential causes for the add-on problems, and no sure way to identify the cause.

So you just endure.

***

Dan just plugged in the vape for me and told me goodnight. He did Boomer’s voice for him as he pulled the door closed.

“Love you too, Ma.”

“Love you too, Boom!”

“Love you too, Ma.”

(I don’t know. We’re weird. We do voiceovers for our pets. Also I sleep in the guest bedroom. It sucks. Cancer sucks.)

I asked Dan once why Boomer always said “I love you too” over and over, and he informed me that it was because Boomer had to have the last word.

Duh.

***

Anyway, barfing.

I woke up at 11:30 last night and reached for a vomit bag. The combination smell of those vinyl bags, my PB&J, and stomach acid left me heaving long after I’d blown all my chunks.

When the spasming in my stomach stopped, I brushed my teeth for the second time and walked the bag to the garage. I had called to Dan for help, but he was snoring. Hard.

Oh well, he deserves to sleep, I thought.

Unfortunately, I had to turn the hall lights on, and he stumbled in to check on me when I returned. I was sitting on the bed pouting. The dog and cat were right on Dan’s heels, and I commented that everybody had come to console me.

If there’s a bright side to puking in this house, it’s that everyone is curious. You’re never alone.

***

Regardless, I hate throwing up. It’s the worst. And I mostly hate food now too. (I’ve lost 26 pounds since quitting dexamethasone, but don’t worry. I’m still unbelievably fat for a girl who hauls 2-pound vomit bags to the garbage a couple times a week.)

***

I have no wrap-up for this post. I’m just going to try to sleep now.

I Might Owe Dexamethasone a Very Small Apology

I Might Owe Dexamethasone a Very Small Apology

It appears I was a bit hasty in my judgment of dexamethasone. Still suffering after a round of chemo without it, I can now see that in spite of its horrible side effects it was masking some of chemo’s even more horrible side effects.

I won’t go into the full details of my emetic escapades, more for my sake than yours. But I will just say that Activia is off the menu for a few days while I purge my scent memory.

There was some discussion between Dan and I about what to do next, seeing how I spent maybe three hours not in bed this past week.

“You could try taking the dex only during the week you do chemo,” Dan suggested.

I whined something about not wanting to while admitting it wasn’t an unreasonable suggestion. “It was just so hard to quit. I almost think I’d rather suffer some new evil than go through that again.”

For now I’ve decided to take more Zofran, despite the headaches and hiccups. I’ll use cannabis to make me want food and Zofran to keep it down.

At least until the next thing. Because there is always a next thing.

Chemo Round 5

Chemo Round 5

Last month when I completed chemo round 4, I did it at Mom & Dad’s to give Dan a couple of weeks off from caregiving.

It was the first chemo week were I had zero GI distress on the Wednesday following taking Gleostine, so naturally I was obsessed with why that time was different.

“Mom buys different yogurt,” I told Dan. “I was reading the labels and it has different active cultures in it. Buy me that Jamie Lee Curtis junk next time.”

When you’re on chemo you get lots of people telling you how much you need to eat yogurt, but they don’t really bother to say which kind. I switched to Activia at home. No GI distress for round 5 either.

I have at least one thing to celebrate.

The rest of round 5 has been difficult. Being off the dexamethasone is a two-edged sword. I’m losing weight, but my appetite is crap. Not eating plus not having the steroid is making me even more weak and tired. Something I thought was a physical impossibility.

Food is mostly gross right now, and there’s little rhyme or reason to what I can stomach and what I can’t. Generally, the warmer the food, the more it smells, the more it makes me want to hurl.

But eating cold food in the winter gets old fast.

And most of the time I just feel too tired to eat. Like moving my jaw to chew is just too much to ask of myself.

Also the word “chew” made me feel sick just now.

*Puts hand over mouth*

I should be coming to the end of the worst part of Chemo Week #5 soon though. And I managed to venture out into the back yard today for a few minutes.

It was a little too windy to not be cold, but the fresh air was good for me. I’m in need of an early Spring. If you see that groundhog, pick him up by the scruff and threaten to replace him with a marmot unless he does the right fucking thing.

Dexamethasone Sucks

Dexamethasone Sucks

Remember how I’m coming off the dexamethasone? Here’s an update I posted to Facebook yesterday:

As of 8:36 am, I was 96 hours dexamethasone free. But as morning turned into noon, I started feeling sick to my stomach. (I’ve been down this road before, so I had a small lunch of yogurt and 2 cuties and popped a 1/4 mg of dex to stave off the vomiting. You’re supposed to take dex with food.)

“I don’t want to start horking and land in the ER again like I did in June,” I told Dan.

Four minutes later my entire head was in a vomit bag.

So here’s the question: Did I or didn’t I take dex today? Or maybe it’s Schrödinger’s Dex?

While the vomiting has been quelled by a medical cannabis patch, the nausea is lingering. My appetite is at about 6%, but that’s OK for now. I still have a ton of steroid weight to lose. So far I’ve made do with a bowl of Rice Chex, some lactose-free, high-protein milk, and eight Wheat Thins.

I’m going to try real hard to eat some chicken nuggets tonight. Salt and protein have always been my way out of Pukelandia.

Aside from the gross stuff, I’m having major muscle fatigue and soreness. My quads are screaming at me like I’ve been marathon training without taking any rest days, despite the fact I’ve just been in bed whining since Tuesday.

I’m also having some issues with rebound swelling and double vision. Both things to keep an eye on, because my brain could swell, too, without the dex—and that would be bad. And require me to go back on the dex. And we don’t want that.

Dear god, we do not want that.

The Dexamethasone Saga Continues

The Dexamethasone Saga Continues

I haven’t taken dexamethasone since December 31, 2017. I didn’t plan for it to be a year-end thing, it just worked out that way. And, although I’m proud to be 72 hours steroid free, I am not completely out of the woods.

I’ve been pretty much bed-ridden since Christmas, when I started the final step down before quitting. My muscles hurt in ways that force me to shuffle down the hallway taking the tiniest steps. I ask Dan to fill my water glass for me and turn switches on and off, because I just can’t.

My skin hurts. When I twist my torso to grab the toilet paper orI roll over in bed, my skin feels like it’s being twisted or pinched after first being carpet burned. But all of this is on the under side of my skin, not the surface. (Don’t worry if this doesn’t make sense to you; it doesn’t make sense to me either.)

My coat hanger pain is so intense, it frequently reduces me to tears. The referred pain from the nerve it pinches goes into my left arm, my neck, my jaw, my ear. And the muscles covering my skull on the left side of my head—the ones I used to use to wiggle my ears—are just tiny over-dramatic knots. When my head hits the pillow, they signal to my brain that someone’s digging around in an open wound.

Because I hate to leave things on a completely negative note: I bought the Bedknobs & Broomsticks Blu-Ray with an Amazon gift card the other day. It is supposed to arrive today, and once it gets here I am going to watch it on repeat until I fall asleep.

Very Little Happening Over Here

Very Little Happening Over Here

Last week my parents were here to help us clean and organize.

That’s because I came home after completing daily radiation therapy in April, and there were still things I hadn’t found a place for. My home office was the catch-all for anything I couldn’t deal with—meaning the floor was entirely covered with laundry baskets full of clothes, books, gifts, papers, and furniture.

Sure, it was annoying walking by that room and seeing the chaos, but it was also a hazard. I don’t exactly get around well on my feet when there aren’t a billion obstacles in my way.

Anyway, my parents (a.k.a. the best parents in the world) helped us clean, mow, fix my Kitchen Aid mixer, and more—all while my mom is dealing with her own sidelining medical problems.

In October, the plan is to have a garage sale as a way to finish de-cluttering and fund-raise for ourselves. If you’re in the area and want to see what we’ve got for sale, watch my Facebook page for an announcement. If you’re not in the area but want to help, you can contribute to my YouCaring campaign or buy from our Amazon wishlist (items automatically ship to our address when you buy).

***

It’s been so long since I’ve posted here. I feel like I should give a health update. Truth is, there’s not much to tell. I spend a lot of time sleeping. The first week after a chemo treatment, I’m exhausted and tired.

But there’s also the issue of my tapering off of dexamethasone again. I’m down to one half-milligram dose daily. It makes me so lethargic and all of my muscles are achy and sore. Not just major muscle groups like quads and hamstrings and biceps and triceps, but the muscles in my cheeks and hands and toes.

My oncologist says I’m on such a low dose of dex that he doesn’t see how it can be affecting me so dramatically. This is the story of my life, people. Medicines that barely affect most patients will potentially melt me from the inside out. It’s a blessing and a curse. On the one hand, if I take a half dose of Benadryl, I will sleep for a week. On the other hand, medical cannabis works so well on me that I only have to visit the dispensary every six weeks or so.

Anyway, coming off of the steroid is not fun, but I am more confident that I will actually be able to quit taking the dexamethasone entirely in a few more weeks. That will hopefully lead to much needed weight loss and help me scratch steroid-induced diabetes off my list of things to worry about.

Gleostine: Round 1, Part 1

Gleostine: Round 1, Part 1

It’s been about 72 hours since my first dose of gleostine, and I wanted to let you know how things are going.

No Puking, Hooray!

Although I was awash in waves of queasiness for the first 36 hours or so, my stomach never gave up the goods. (Thanks, Zofran. Thanks, medical cannabis.)

This is particularly encouraging because I’m also just a few days into another dexamethasone taper, and I learned at the oncologists’s last month that dex is sometimes prescribed as an anti-nausea med. So it could’ve been a double-whammy. But it wasn’t. I am grateful.

So Much Fatigue

The most severe side effect I’ve experienced is a crushing fatigue. It surpasses any fatigue I’ve experienced to date and feels like my legs and arms are encumbered with cast iron while I try to wade through peanut butter.

The good news is that it seems I’ve reached peak fatigue already, and I’m starting to get some energy back. The new sativa strain I vape during the day actually gives me a little boost of energy, but it’s not powerful enough to completely counteract the chemo.

We celebrate tiny miracles in this household though. Usually with food.

Gearing Up to Say Goodbye to My Eyebrows

I rubbed my eyes today, and noticed a disconcerting number of eyebrow hairs just fall out. I have no idea if this will be limited to eyebrows or if I’ll start losing the hair on my head too.

And I was just bragging yesterday about how I was going for an Anne Burrell-inspired hairdo as my hair had been growing really well the past couple of weeks.

No Allergic Reaction

The absolute best news is that I’m able to tolerate the gleostine. Having a few extra weeks of treatment made it possible for me to enjoy some outdoor time and play Just Dance, but I was getting itchy about doing something to proactively target the brain tumor.

Gotta See a Man about a Tumor

Gotta See a Man about a Tumor

True story: There’s a medium-security federal prison on I-70 in Greenville, Illinois. You can see it from Interstate 70. You can also see a sign situated in front of it that reads “If you lived in Greenville, you’d be home by now.”

“Oh my God, Dan. Did you see that?” I asked through my laughter. “Who puts a ‘you’d be home by now’ sign in front of a federal prison?”

“Why, the great citizens of Greenville, Illinois, I do reckon.”

“It makes me wonder if someone has the best sense of humor ever or if someone is uncommonly oblivious.” And then I paused reflectively for a second. “Doesn’t matter I guess. I can’t decide which would be funnier.”

We were on our way to St. Louis to see my doctor about my brain tumor, a Grade 2 astrocytoma nestled all up in my brain stem.

***

I had a full day of doctor things at Barnes-Jewish Hospital. It started off with an MRI. Then I had labs done to check my counts and make sure I was in good shape to start back up on chemotherapy, and then I had a visit with my neuro-oncologist.

The nurse who installed my IV for the MRI contrast immediately made my day. “Are you going to have other labs at the 7th floor location? If so, I can leave this IV in, and the nurses there can use it to draw blood. One stick today.”

“YASSSSSS!” I cheered. I’m a hard stick now that I’m a cancer patient. Like, my-veins-are-sentient-and-burrow-into-my-bone-marrow-at-the-scent-of-an-alcohol-swab kind of hard stick.

emily suess

When it was time for the draw, the IV wouldn’t give up the goods though. In all, they stuck me five times yesterday. And that just sort of scratches the surface of the list of Things That Were Hard About Yesterday™.

My MRI appointment didn’t show up in my patient portal thingy, so I went to the wrong location. We had to walk to another zip code to get to the right place. And the sign-in process there was senseless. Requiring bouncing around on three different floors. I don’t know if y’all remember this, but walking is hard for me.

I managed to get it done without a wheelchair because I’m stubborn and had my rollator.  (My legs cramped up all night long. Today I can hardly stand up and there’s a spot on my to-do list in all caps “APPLY MAGNESIUM LOTION AND SIT IN YOUR DAMN RECLINER ALL DAY.”)

The MRI itself was the best one yet. “Imagine” played on the headphones while the magnets jiggled the table and lulled me into a relaxing sleep. When I wasn’t dozing in the Skinny Tube of Loud and Screechy Noises, I was able to keep my eyes open. I am officially over all MRI fears.

Die in a tire fire, claustrophobia.

***

Despite an extremely draining six outpatient hours at the hospital, I feel good about the outcome. The MRI told the doctors that my brain tumor is still stable—a comfort considering any active treatments were postponed while we waited to figure out what was happening with the Temodar.

According to the nurse, my blood counts were “beautiful” following my treatment hiatus, meaning I’m in a good spot to resume treatment.

I don’t have to go back on the Temodar!

My doctor has prescribed a new chemotherapy pill, and this is one of those rare cases where “the evil that you know is better than the evil that you don’t know” just does not apply.

When my doctor said, “We’re very concerned about what happened to you on the Temodar,” I was so relieved.

My doctors are still listening to me and they are concerned about my quality of life. They care about me as a whole human person. I’m not just a tumor incubator with the potential to land them on the cover of Brain Tumor Slayers Monthly.

***

So here’s the plan:

  • My new chemotherapy is still a pill that I can take at home. No infusions.
  • The name of the medicine is gleostine (also called lomustine, Ceenu).
  • I take it for one day and have six weeks off, as opposed to the five-day regimen for Temodar.
  • Fatigue seems to be a certainty as far as side effects go.
  • One dose of chemotherapy costs $110. (That’s in addition to my monthly premium of $350 for health insurance, so here’s where I plug my YouCaring fundraiser page again.)
  • I will resume weekly labs to make sure my blood counts are good, or at least passable, but I can do them here in Urbana.
  • My doctor gave me a new script for PT/OT. I have to check with insurance to see if I can even afford it. But I’m hoping it will be possible and that it will help me get over some pain and numbness that’s overtaking the left side of my body lately.
  • My dexamethasone dosage is being reduced from 2 mg daily to 1 mg daily. (Fingers crossed, I can stay active but a little less hungry on this dosage. I gained another 10 pounds since my last doc visit.)
I Used Knives This Week, People!

I Used Knives This Week, People!

I used knives this week—and I mean ones for cutting, not just buttering. I sliced tomatoes for a couple of turkey sandwiches and then on a couple of other occasions I cut fresh strawberries.

Two things make this accomplishment noteworthy:

  1. Kitchen prep requires standing and balancing at the counter with BOTH ARMS FREE.
  2. Wielding a knife while standing and balancing at the counter requires a certain amount of confidence in my ability to perform a task while working with something sharp and stabby.

Assuming that my brain tumor is still unchanged since the last MRI, I pretty much give all credit for my dexterity and standing-up strength (however little of it there might currently be) to the dexamethasone.

My chemo doctor has given me another 30-day prescription for the dex. He’s also requested that I have another MRI. It’s just that time again; there’s nothing troublesome that’s forcing the issue. So I’ll be doing the MRI thing again on July 26.

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