Brain Tumor

Very Little Happening Over Here

garage saleLast 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.

Brain Tumor · Medical Cannabis

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.

Brain Tumor

Gotta See a Man about a Tumor

fci greenville.PNG

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 suessWhen 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.)

 

Brain Tumor

I Used Knives This Week, People!

Sliced Round Tomato at MadhurawadaI 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.

Brain Tumor

Dear 17 Pounds

7Dear 17 Pounds I Lost in June Because I puked for 10 Straight Days,

I’m glad you’re back. No, really. Honestly.

When you left, I felt like I was obligated to appreciate your absence on some level. Like, If I’m going to be this miserable, I should at least be proud that I am getting skinnier. Cancer chic. Like the world expects of a cancer patient.

But it was all kinds of awful being that sick. And there is nothing about watching the ceiling fan blades over my bed collect motes of dust while the rest of the room spins that makes me grateful for sweatpants that fit a little bit better.

I’d rather put on two pounds a week, some of it water weight and some of it weight weight, than wonder if I’m dying. So, 17 Pounds, when you saw the dexamethasone party was happening again and returned, I was relieved that I didn’t have to request others make sure Dan was going to be okay.

He gets withdrawn even without grief, without stress. Please check on him if something happens to me.

Pre-tumor me was fairly confident that it was impossible to be 5’6″, 220 pounds and happy. But here, now, I understand that I can weigh a little less and be bedridden—or I can weigh a lot and walk around the back yard to inspect the garden, helpfully empty the dishwasher a few times a week so Dan doesn’t have to do everything, and fold a basket of laundry or two.

I’m hungry all the time now, 17 Pounds. When Dan asks what I want for dinner, I have answers instead of shrugging shoulders or requests for him not to list off the names of foods.

I want Stroganoff!

Charcuterie!

Tacos!

I gush as I eat. Everything tastes so delicious. And I know that the return of my appetite calms Dan as it calms me.

I don’t know how long you’ll stay. The doctors are still trying to figure out what treatment comes next. But whatever it is, know that you are welcome. And so are your friends.

Love,
Emily

Brain Tumor

Junky Old Edema

stay puft

Being back on the steroid dexamethasone is slightly bothersome, but mostly a pure delight. In comparison to the several days of vomiting, spewing bile, and dry heaving during my taper from the drug earlier this month, the last several days have been joyous.

I am putting weight back on, but don’t really give a shit about that. I can walk around. I can type. I can think not-depressing things. And I enjoy eating and recipe hunting so immensely that some days I just soak up being alive instead of contemplating the tumor in my head.

If there’s one major dislike, though, it’s the edema (or swelling) caused by the steroid. I can deal with my balloon-like feet and hands, but the face stuff. ARGH!

I am so moon-faced that I can’t put earrings on. Seriously. My cheeks stick out too far and my ears are hidden BEHIND them. I can’t turn my head and look at myself in the mirror for a couple of reasons. First, the range of motion in my neck and shoulders is still pretty limited, even though I’m nearly five months post-op. Second, my nystagmus is unchanged. When I look left or right, the room gets very, very spinny.

And then there’s that glorious feeling that I’m being choked to death by my own neck. Probably the most irksome of all the swells. I have a neck roll that, aside from being unattractive, is like totally impossible to dry thoroughly after a shower.

TMI? Yeah, don’t care.

I ingested 66 ounces of fluids yesterday plus had an entire plate of produce for supper—mostly for the high water content. Still woke up this morning feeling all Stay Puft. (Heat me up and I expand like a marshmallow, baby.) It’s going to be a lot warmer today, which doesn’t help. So if you need me, I’ll be in my recliner with my feet up waiting for Second Breakfast and playing Fallout Shelter.

 

Brain Tumor

They See Me Rollatin’

cat on rollator.PNGWe’re having unseasonably fantastic weather here in Urbana, and that means that I’ve been spending anywhere from 60 to 90 minutes outside for the past few days.

I mostly just stare in wonderment at Dan’s garden from under the shade of our maple tree, but I’m moving around a little bit too. Grabbing my trusty rollator and walking around the back yard.

Today I was so pumped, I walked to the front of the house. In my pajamas. Part of me wants to wear a sign for my neighbors: PAJAMAS ARE FOR CLOSERS.

***

 

“I don’t know why I love staring at these plants so much,” I said to Dan. “It’s not like I’m going to see them grow in the time I’m out here. Just something about it makes me happy.”

“I think it’s because there’s something inherently optimistic about a garden.”

So true. Also? I get to imagine all the things I’m going to eat. Nothing tastes bad on dexamethasone. Nothing.

I mean, I’m not going to start eating mushrooms anytime soon, but I have a suspicion I could tolerate them now.

***

My ACA health insurance kicks in on July 1, so I got on the phone yesterday to schedule that appointment with the allergist I had to cancel when I lost my job and insurance at the end of May.

The test is to determine whether or not I have an official allergy to Temodar, my chemotherapy pill. I am mostly hoping that the answer to that question is yes, because I want absolutely NOTHING to do with that pill ever again. And I want my oncologist to say nicely to me that he will never ask me to swallow certain death in pill form ever again.

But it’s not clear to me yet what other chemotherapy options I will have if the Temodar is a no-go. Fighting brain cancer requires treatments that can cross the blood-brain barrier, and that’s kind of complicated. And, yeah, I want to fight this shit, so…

***

If you’d like to donate to help us with medical and living expenses as I continue treatment, please visit my YouCaring campaign.