Thursday, January 3, 2019

Nearly jubilant

It was a good but tiring day today!  The spouse and I hit the road after he walked the girls to school, we listened to comedy downloaded from Spotify, and ate brunch in the distant town before the appointments started.

The MRI of my brain went off without a hitch.  At first it looked like the phlebotomist was going to have trouble finding a vein for injecting the contrast, but then he switched arms and had no troubles.  Usually I like a silent scan, but this time I opted for music in my headphones.  Adele set Fire to the Rain, and I don't remember what other songs played but the scan only lasted about 5-6 songs.

Then we trekked through the hospital to get the results from Dr. SRS Expert.  First his two new residents came in, and it was apparent that they were new.  The previous resident we'd interacted with was a senior resident, and these residents were...whew.  Brand new, perhaps.  Not on top of their game today, and indeed put us off of our game a little bit.  They came in making excuses about having gone into the wrong room first (something about going into a room with Dr. Allen instead of Mrs. Allen...I decided not to confuse them further by pointing out to them that I'm both) and in their blustering failed to introduce themselves.  Then they asked me a lot of questions about how I'm doing, and suggested that maybe my ear fullness is due to the common cold?  But I don't have a cold!  Then they pulled up the pictures and were excited to share the "good news" with me but didn't really explain the good news.  Fortunately Dr. SRS Expert wasn't long behind them, and he too was very optimistic about the results of the scan.  As with previous scans, the good news is in what ISN'T there--no new tumors.  I'm getting the feeling that this is an atypical result!  He was nearly jubilant about this.  I must be sure not to take this for granted, even though it is clearly my expectation that I will not sprout more tumors (we've done radiation twice, I'm taking neratinib, and I have no cancer elsewhere).  And really, if Dr. SRS Expert is pleased with the results, then that's all there is, there isn't anymore.  It sucks to leave the exam room on a note of ambiguity, which is what we did last time.  The next scan is not until April.

The additional good news is that Lloyd is not bigger, and is in fact smaller in important ways.  The part of Lloyd that was growing looked kinda like a tail, and that tail is much reduced.  It's more of a nubbin now, not tail like at all.  So...whole brain radiation did its job!  Huzzah!  (We don't yet have the blood flow (perfusion) results, but unlike previously, Dr. SRS Expert didn't hold back his interpretations.  I'm not sure why.)

Neutral news that is not surprising is that my brain swelling is unchanged.  I updated him on my steroid status and said that my head is feeling halfway decent lately, and he said something about the steroid dose being pretty good for now then.  I just reduced the dose a few days ago, so I'll hold here for a week or so then try to cut another half a milligram.  Maybe I won't be able to get off of them completely, but I'll keep trying.  I'll just listen to my head.

We briefly discussed the fatigue, and he said that it could continue for up to 6 months, but then he pointed out that I'm young so maybe not quite so long.  I countered that I'm almost 40!  But I was joking; I know that I'm young, and I also know from previous cancer treatments that yes the fatigue will linger, possibly for up to a year, but it will get easier here pretty soon.  Eventually it'll shift away from all-day fatigue and into a type of fatigue that allows for more functions but makes my days shorter and my nights longer.  That'll be easier for this wife/mom/daughter/sister/friend/scientist to work with.  Right now I'm still pretty darn tired all darn day!  And even if I start out with some energy, I'm easily depleted after a little exercise or family time.  But I'll take it!  I'm living with cancer, not dying from it.  I feel like I'm doing pretty awesome, in the scheme of things, in my slow and nappy way.  Thank you all for being patient with me!

Puerto Rican rainbow, somewhere in this picture (sadly it's not showing up on my computer screen, but I can see it on my phone screen).  My friends S&B are in Puerto Rico now, and my Dad and bonus mom are headed to the Dominican Republic tomorrow.  Enjoy the beach, lovies!!! 


  1. Dr Allen? Mrs Allen? Professor Beaker? Like others before you - in the words of Dr R, you too are paving the way - for patients and med students too apparently! God bless their intentions to help you. No new cancer means a big HUZZAH! Rest, nap, heal and call upon Carnation Nation for support!! What? meantion of lunch?? Mark it down for April sister!! Thought about you all day, Love you kid!!

  2. This is excellent news, Heather! So happy to read this tonight!

  3. Whew! You deserve all the good news. <3

  4. Great job Heather. What a big day. Rest Sis!!

  5. I am so happy to see this and have been thinking of you! Hope the shutdown gave you extra rest and time to heal even more.