I had follow-up appointments with all of my brain tumor doctors earlier this week at Siteman Cancer Center. Posting a bare-bones update so I can keep people informed but not expend too much energy.
I’m tired, guys.
I got an all-clear as far as recovery from February’s brain biospy. I’m still frustrated with my progress, because I want to be perfect. But doctor is very happy with my progress and says I don’t have to go back to him unless something comes up. As a part of my medical team, he will continue to monitor my periodic MRIs.
The second dose of chemo (gleostine) will be higher than the first. Since I had the allergy to Temodar, he didn’t want to start me off with too high a dose of the new chemo and cause me additional problems. Things went well and my blood counts were decent, so my next round will be higher. I have the pills in-hand, but don’t plan to take them until Monday.
He’s given me the go-ahead to try tapering off of dexamethasone again with some flexibility to do the taper however my body can handle it. His only admonition was to go back on it immediately if I had any problems. No worries there. I’m not keen on ER visits.
I asked him about getting my flu shot this year, and he gave me his blessing with a caveat: get the shot on week 5 of my chemo cycle when my counts are the highest and my body is at its toughest.
*** Special Request: If you’re able, get your flu shot. Yes, even if you feel like you don’t need it. You are helping to protect people like me with compromised immune systems stay as healthy as possible. ***
He only needs to see me every other MRI, assuming my scans continue to look good.
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.
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.)
We got back last night from an overnight jaunt to St. Louis, where I met with an allergist to try and determine whether or not I have an allergy to Temodar, the chemo pill prescribed by my oncologist. To sum up how I got here, in case this is news or you’re fuzzy on the details:
In March and April, I took Temodar simultaneously while completing radiation at a dose of 140 mg. Those 5+ weeks were pretty okay. I had some side effects, but nothing anywhere near as bad I had been bracing myself for.
The day after that round of treatment ended, I broke out in what I thought was THE WORST RASH IN HUMAN HISTORY. A dermatologist was seen. Creams and antihistamines were prescribed. I was miserable for a few days, but it got better.
Radiation was officially over at this point, and chemotherapy and I were on a break for a couple of weeks. The plan was for me to start up the once-a-month-for-five-days-in-a-row chemo regimen on May 15. The dosage would be much higher: 320 mg first thing in the morning after I’d take my precautionary Zofran.
I took that first 320-mg dose, and four hours later the apocalypse started. My doctor put my treatment on hold and recommended I see an allergist.
To my great relief, the allergist did not order me to swallow a Temodar pill and watch to see what happened. She only ordered a scratch test with serum made at a couple of different concentrations.
“If we get a positive reaction, that will certainly tell us something,” she said. “However, if we get a negative. Well, that doesn’t really tell us anything. There isn’t a whole lot of literature on this.”
There was no reaction, but based on the symptoms I’d reported and some lab work I’d had done to investigate whether DRESS syndrome was a potential culprit, she devised a basic plan of attack.
Her first choice for me would be to make a switch to a new chemo drug, if a suitable alternative is available. If not, she’d like to try desensitizing me to the Temodar so that I can continue with treatment and not lose progress on shrinking the fucker. (She did not call my tumor a fucker.)
Desensitizing would involve me taking micro doses over a longer period of time. They’d keep me under observation and monitor me for eosinophilia until they figure out what I can handle.
So my allergist and my oncologist are going to have a chat about next steps. In the meantime, I’m just holding tight and enjoying some relatively decent days without chemo.
Next Monday is my Temodar allergy test. To get accurate results, there are many medications the allergist has asked me to stop taking. Things like Benadryl, hydroxyzine, nortriptyline. (Not that I take these things regularly, but I’m especially supposed to not take them right now for reasons I will assume are obvious.)
Medical cannabis is not on the no-no list that was mailed to me, but then it wouldn’t be. So I took myself off of it too. Because I don’t want to have to repeat any tests or suffer the consequences of inaccurate results.
So when I got up this morning stiff, sore, unrefreshed, and the most not-morning-person I’ve been in a couple of weeks, I said out loud “I miss you, Pot.”
Eating half a medical cannabis peanut butter cookie with a scoop of ice cream at 7 p.m. has become something of a ritual for me. Like being tucked in by my parents when I was five. My 1:1 CBD/THC cookie kicks in about 9:30 or 10:00 pm. It’s then you’ll find me relaxing in my recliner until I can’t keep my eyes open and I move to bed.
I sleep well until my dexamethasone hunger and the rising sun wake me up. And let me tell you, after literal years of pain-related insomnia, good sleep is perhaps my favorite thing about cannabis.
But that’s not really what this post is about. It’s just my roundabout way of explaining to you why I was up and restless last night and how I knew that Dan was awake all night long too, despite trying to shuffle quietly around the house.
“You had a rough night? You were up a lot.”
“Yeah,” he said. “This tooth.”
His tooth has been nagging at him for months now, since about the time I was hospitalized. And because Dan has this habit of doing everything for me and pretty much nothing for himself, he’s been ignoring it. Or trying. I’ve noticed the Anbesol sitting out on the bathroom counter a lot more lately.
“You’re calling the dentist tomorrow. I know we don’t have dental, but we’ll figure it out,” I said.
“You have to put the oxygen mask on yourself first and all that shit.”
“You’re no good to me dead, Poehlman.”
This happened with another tooth a few years ago, and it turned into an emergency room visit and oral surgery a few days later. (Dan takes a biologic that makes him a high risk for infection, and the tooth abscessed, and…)
He has promised to call first thing tomorrow morning. If he requires oral surgery this time too, it will mean finding someone who can 1.) sit in the waiting room while he’s under anesthesia and 2.) drive him home when he’s finished and asking staff what time the X-Men are coming over for dinner.
It will also mean asking for more money from our support system.
As everyone’s probably tired of hearing by now, we have no income at present. So in preparation for the costs associated with The Next Thing™, I’m adjusting the goal for my YouCaring campaign and asking you to consider giving—or sharing the campaign on your blogs and social media.
We’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.