Friday, April 12, 2019


Well, in the car I was telling dad how I'm trying to get out of the habit of ascribing either a positive or negative value to these darn scans.  It's just data, and in this case it truly is neither good nor bad.  It's just more of the same, and I'm fine with that.  1) no new tumors!, 2) I'm comfortable and I'm not having debilitating side effects!, 3) my brain swelling is increased (in other words, worse, but I said I wasn't going to use a word like that), 4) Lloyd is still there, obviously.

So what do we do about the dang swelling?  Same as always...increase the dang steroid dose again.  Dr. SRS Expert suggested 2 mgs in the morning and 2 mgs in the evening.  I countered, could we just try 2 mgs in the morning, since I'm not having seizures, etc., and this is just a preventative thing...?  He said that that's fine.  SO, hbomb continues to over-achieve at swelling and under-achieve at getting off the steroids.

Although I'm not having terrible side effects, in hindsight I think I can tell that I have brain swelling.  When I stand up too quickly, my head starts to throb.  And my ear still feels pressure-y, it's never gotten better.  And I don't know if or how this relates, but my jaw has been sore lately.  A short list of things that are hardly worth complaining about, but perhaps are indicative of that which I cannot see. Otherwise and thankfully, my body isn't giving me much information about how much swelling is going on in there.  Quality of life = high.

Well, I was going to delight you with more spring break photos, but technology is failing. time!  Thank you for your support, dear ones!  Have a swell weekend!

Wednesday, April 3, 2019

Pretty awesome!!

Who has a blog?  Me?  I have a blog?  Huh.  But there's all of these other ways I like to spend my time, too.  Well, that doesn't mean that you no longer have a blog, hbomb!!

I apologize for the delay, Carnation Nation!  Suffice it to say that I am rocking it in all sorts of dimensions.

And I do have several (small) recovery updates for you.

First, the never-ending drama with the steroids.  I have stepped down to a mere 1 milligram (mg) of dexamethasone per day.  I am very proud of this, and I am very physically comfortable at this dose.  I tried 0.5 mgs per day for a week, and felt moderately awful.  Headaches and nausea, which could mean either brain swelling OR discomfort due to underperforming adrenal glands.  I don't know how I'm to tell the difference!  So I bounced my dose back up to 1 mg.  Talked to Dr. Oncologist about this, and she said it's still too high of a dose for my adrenal glands to start making my own steroids, so I do need to come down/off eventually.  But I have an MRI next week (Friday the 12th)!  So she agreed that I could hold at this dose until after the MRI.  Huzzah for comfort and ease in the meantime!

Second, I have been soooo fortunate to be one of (what seems to be relatively few) chronically ill patients that had never had a problem with her health insurance.  Well, my health insurance, which has been awesome for a decade and has not denied a thing that I've needed to survive, denied my oral chemotherapy for 2019.  Turns out that this type of thing happens so frequently to so many patients that my cancer center employs a person who's entire job it is to find a way to get the needed care (this person even crafted the refutation and submitted it to my insurance company on my behalf.  Insurance denied it a second time.  SO this dedicated person contacted the drug company directly and somehow they agreed to give me the drug for free for a year.  My chemo shipment arrived at my house the day after I ran out of the pills from my previously insurance-approved prescription.  High drama! 

More drama:  The literature that came with the chemo shipment from the drug company was slightly different from the literature I had received from the previous pharmacy.  SO, I read it.  And in my reading of this new literature I discovered something:  my chemo, Nerlynx, interacts with another drug that I have been taking allllll year, Zantac.  (I've been taking the Zantac to prevent ulcers that would be caused by the steroid.  You might be asking, but Heather, why did no one mention the interaction between Zantac and Nerlynx previously?  Well, according to this literature, Nerlynx interacts with too many drugs for them to list them all on the paper.  They just happened to choose Zantac as one of the top 6 to highlight, so I got lucky in my reading.  But yea, it definitely seems as though my original Nerlynx pharmacist should have caught this months ago).  GUYS, I think that this is why I have not had the terrible diarrhea that is supposed to be caused by the Nerlynx (thanks, Zantac!).  My guts are not in fact a medical marvel.  So, this new-to-me literature said that if you must take Zantac, take it 10 hours before Nerlynx or 2 hours after Nerlynx or both.  Following these instructions does in fact allow my body to produce the famous watery side-effect of Nerlynx.  But it's not daily or constant, so perhaps my guts are indeed special.  I do think it's better (less watery diarrhea) if I eat oatmeal for breakfast (I know who's not surprised by this result--Dr. JT, PhD).  But this is just a guess right now, not rigorously tested.  But you'd be hard pressed to get me to eat anything other than oatmeal for breakfast now that I've got this notion in my head, so this hypothesis may never get tested.

I've been working!  Not quite full time hours, but I'm creeping closer and closer.  Still get quite fatigued and need lots of sleep at night, but it's getting better!  And everyone needs good sleep at night.  Occassional naps are not denied. 

Other news:  my hair has started to grow back in places.  I still have baldish-spots.  I say ish because there are light (not gray, I don't think!) thin hairs in the bald spots that never fell out, and I think that those hairs are growing.  But my dark brown hairs are the ones that did the falling out, and those are growing back in some places better than others.  It looks sort of ridiculous right now, but I'm not terribly concerned.  I greatly enjoy rubbing my head, and not having to do my hair in the morning (not that I ever did anything in particular with it).  As promised by Dr. Radiation Oncologist, I do have a reverse mohawk.  The biggest baldish spot is a short stripe down the middle of my head.   

More drama:  We took a road trip to Santa Fe for spring break in March, to visit my mom.  It was such a fantastic trip!  But it started out with lots of weather drama that caused some spontaneous re-routing.  I had deep gratitude for my reliable vehicle and my fully charged smartphone on this trip!

Here's the weather drama that tried to thwart our trip:

The eye of that storm is pretty much where we were trying to get to:  Colorado Springs, for a reservation at the kid hotel paradise at the Great Wolf Lodge.  BUT...

Seriously.  I-80 out of Nebraska was closed, I-70 out of Kansas was closed, and all of the highways leading into Colorado springs were closed.

screenshot of Nebraska 511 that evening.  Poor Nebraskans!  And parts of Nebraska and Iowa are still under water from the flooding that this storm caused.  
So, we managed to cancel our Great Wolf Lodge reservation (shoutout to the amazing customer service at Expedia!!  You wouldn't think so, but it's true!), spent an unplanned night in Lincoln, NE, and an unplanned night in Burlington, CO, then proceeded to vacation in southern Colorado (because by then the snow had almost completely melted).  Drama!

Our first vacation item of business was the Royal Gorge.

The family on the complimentary gondola ride across the gorge, approximately 955 feet above the Arkansas River.  Well, included in the somewhat steep cost of admission, so it's not truly complimentary, but you know.

Looking down into the gorge from the gondola.

Ian and Azalea zip lining across the gorge (they're not over the gorge yet in this photo)!  Poor Eleanor wanted to do it, but you have to weigh 100 pounds and be ten years old.  She's not quite either of those things.