Thursday, June 21, 2018


I am digging this scheduled steroid step-down!  Takes the stress and worry right out of it for me.  Unlike February and March when I was previously stepping down my steroid dose, I don't analyze every little brain pain, wondering if I'm stepping down too quickly.  I'm just rolling with it.  Floating, in fact.  It's been incredibly liberating.

My massage therapist gave me the word "floating", as opposed to striving.  I had definitely been striving for lots of things this spring (striving to get stronger, striving to work, striving to participate in family life, striving to heal, etc.), and striving can lead to fatigue, stress, and frustration.  Floating, on the other hand, is so much more restful and stress-free.  So this next phase of my healing palace is focused on floating.  I suppose it's appropriate that it's summer and the awesome city pool is open, so that I can float literally in addition to figuratively.   

I typically feel moderately lousy for ~4 days after lowering my steroid dose, then I start to feel incrementally better again.  The lousiness comes in the form of fatigue and nausea, but it's not half as bad as it was in Feb./March when I was doing the step-down from the higher doses.  Currently, the side effects that are driving me crazy are the chubbiness and the water retention.  These are even worse than the facial hair that I've developed, lol (E said to me, "mom, when will your mustache go away?").  I'm sick of my gut being in my way when I bend over!  My shoulder/neck area is oddly chubby and uncomfortable.  My knees and feet are stiff, and my skin is taught.  In short, my body just doesn't feel right.  But I'm persevering!  I'm still exercising almost every day (probably 5/7 days each week...sometimes I'm sluggish but I get it done!), my diet is nearly normal (I still can't eat ice cream!  Messes up my guts!  Froyo for me!), I'm napping less, and my brain doesn't hurt very much or very often.  Huzzah!

MONDAY is scheduled to be my LAST steroid dose.  I'll take it with breakfast, then I'll be done!  I anticipate feeling a touch crummy next week, but I have no reason to expect that it'll be any worse than last week.  Then I'll float along until my own adrenal glands start up again, which Dr. Oncologist says could take up to 9 months.  Woa!  9 months!  That's a long time!  But that's okay.  I look forward to being alive in 9 months with some functioning adrenal glands.

Dr. O had previously said that I could drive again when I get off of the steroids.  I was thinking I could drive myself to work as soon as Tuesday?  But the spouse suggested that I wait until I see Dr. O next Friday just to make sure that I have her endorsement to get behind the wheel.  That's probably a good idea, but darn it's hard to keep waiting.  I feel perfectly capable of driving!  I've been biking around town, navigating traffic just fine. 

I'm going to invoke the Bliss List once again to share some exciting things  .I'm just going to restart at number 1, because I have no idea where I left off a few months ago.

1.  My friend R is coming to visit, from Boston, over the July 4th holiday!  Huzzah!!
2.  My friend D is taking me to see Hamilton in early July!  Huzzah!!
3.  My daughters have loved summer camp so far.  Huzzah!  They have attended three different day camps.  Tomorrow we'll attend the play that they've been working on for two weeks in one of the camps: a production of Hansel and Gretel.  In addition, A took a LEGO robotics class, and E took a ceramics class.  Next week they are going to a sleep-away girl scout camp called Sister and Me.  Isn't that adorable?  They are super pumped!
4.  Some folks in my lab have written some amazing scientific articles, and although they were all delayed by Lloyd, they all seem to be ready to submit for publication this summer.  By my tally, we'll be submitting 5 manuscripts this summer.  Huzzah!  I suppose that this item would be better presented on a Bliss List AFTER they are published, but that could be months from now.  I'm feeling pretty pumped up about it NOW because I did a lot of editing this week and saw how complete everything is. Thus, I'm going to float with the current bliss.
5.  My niece, baby A.  How can you not bliss out when you look at that face?  She and I have matching squishy cheeks right now--twins!  Thanks for bringing her up for a visit last weekend, H!  You guys are the best.
Baby A, in the arms of her mom and my sister.

Monday, June 4, 2018

C'mon home, optimism

After my last post, my friend M messaged me to say that it sounded like I still needed to wrap my head around something.  I would have to agree with her, and the struggle is real.  But I wasn't sure what on earth I needed to wrap my head around.  Unfortunately, this unsettled feeling only grew for me over the past week as the various priorities for living were flying around (sick kid, special workshop at work, lovely weather, time with friends, etc. etc.) and I had to decide what to give my energy to.  I realized that a large part of my struggle was simply mortality, and the certain uncertainty of it.  I don't struggle with this very often, but I think I was acutely struggling with it last week amidst the lack of answers to my questions and the beginning of summer break for the kids.  As in, "whelp, Lloyd isn't smaller, so do I need to quit my job and spend every waking hour with my family?"   

Today, friends, all of my questions were answered beyond satisfactorily.  Today I saw Dr. Radiation Oncologist here in town.  I have not seen him for an appointment in three months.  I only saw him briefly for the Girl Scout tour [which, BTW, his team LOVED doing and today many of them said that they'd love to do it again!  They asked if I'd be interested in doing it again next year.  I said maybe another troop would be interested in a tour.  So, if you're a GS troop leader in the area and would like for your troop to tour Radiation Oncology, they'd love to have you and I'd love to help you set it up (as needed/desired).  I even found a "hospital tour" fun badge for the girls.  Huzzah!]  I didn't even get to see Dr. Rad Onc when I got the bigger-Lloyd result in April because Dr. Oncologist consulted with him in my absence (because I already had an appointment scheduled with Dr. Oncologist--she's my quarterback, remember?) and they both recommended that I go straight to the University hospital and consult with a surgeon.  SO, he's been a contributing member of my team, but I have not had the privilege of a consultation in a long while.  I laid all my questions on him today, and he did not disappoint.  He is a WONDERFUL teacher and brings lots of compassion, which is very helpful when discussing facts that have potentially unpleasant repercussions.  He even said that next time I have questions, I don't have to wait for the appointment, he'd be happy to meet me at the coffee shop or something.  Holy cow. 

My first question was about the biology of Lloyd.  Lloyd was smaller in February, bigger in April, and now unchanged from April.  Why?  Answer:  Dr. Rad Onc firmly answered that Lloyd being unchanged from April to now tells us that the bigger-ness of Lloyd was/is due to my immune response to Lloyd and not to Lloyd growing.  (This is what I THOUGHT but really needed to hear in plain English from a professional, especially since Dr. SRS expert at the University hospital said that he doesn't usually see this.  I would think everyone's immune response would be quite different, and size differences due to immune response would be fairly common, especially with the lack of protocol to the dang steroid doses.) 

My follow-up question, then, as you can imagine, was about the dang steroids.  If we want Lloyd and brain swelling to be smaller and less, respectively, and the MRI suggests that my immune response is making Lloyd and swelling NOT smaller, why are we resuming the steroid step-down?  Answer:  Dr. Rad Onc emphasized the badness of long-term steroid use (as others have said), so it's important to get off of them as soon as possible.  But not at the expense of the brain swelling.  The key is to be decreasing the steroids as the body's healing has increased.  In April when I was trying to get off of the 'roids, presumably I had a lot more swelling.  I was closer to the SRS treatment.  Now, two more months have progressed in my brain healing, so hopefully as I wean off the steroids I won't experience such an increase in swelling.  So, I'm hopeful that I'll get off of them this time!  He said to step back up a dose if I experience an increase in head pressure (i.e., same instructions as previously).  I've been on 2 mgs a day for nearly a week, and I'm feeling pretty darn good.  WAAAAAY better than when I was trying to step-down the 'roids in February/March, although I'm taking my dose in the morning (HUZZAH) instead of in the evening, and this definitely makes a difference.  I felt crummy for only like the first 2 days of the new dose last week, then I've felt pretty fine since then.  I can't say that I've noticed a difference in head pressure, except for those first two days.  Huzzah!

Then I asked about the long-term projection for the swelling/healing.  Will this brain pressure turn into the new normal for me, or is it reasonable for me to envision a recovery goal with no brain swelling?  He said he can't be sure, but it certainly is possible to heal to a place where I essentially don't have brain swelling.  Huzzah!  I'll make it happen!  Hungry orchid meditations every day! 

This conversation was going so well that I decided to throw in a question related to the mental grappling with which I started this post.  I told him that way back in January, Dr. Oncologist told me my prognosis, and that she did so by saying that people in "this situation" usually live 12-24 months.  I asked him, what is meant by "this situation", and how does that relate to my current situation?  Is "this situation" any brain tumor, or a tumor of Lloyd's size, or patients with long-term brain swelling, etc. etc.?  I can see many ways to define "this situation", so now that I find myself with an immune response making my scans show variable Lloyd sizes, I want to better understand what exactly "this situation" is.  Now guys, I'm not one to focus on prognosis statistics, but seriously I'm either 1/2 or 1/4 of the way into my 12-24 months, so I decided I needed to better understand what causes the statistic in order to evaluate how much it does or does not apply to me, and quite frankly how to spend my time!  And here Dr. Rad Onc and I had a terrific and very much relief-imparting conversation.  He said that yes, "this situation" is metastatic cancer in the brain, and the reason for the 12-24 month statistic is because usually it is a sign that there is uncontrolled cancer somewhere in the body.  He also said that typically people have multiple brain metastases that have been spit off from this elsewhere-in-the-body cancer.  He pointed out that unlike the data underlying the statistic, I continue to have NO EVIDENCE of cancer ANYWHERE else in my body, and I only had ONE Lloyd, which at this point seems to have been treated effectively.  He said that with my current data (PET and MRI scans), it's less likely that I'm going to fall into that 12-24 month category (but of course, no one knows when or how they're going to die).  So, every clean PET scan and every MRI with no new brain tumors improves my prognosis, guys!  Huzzah!  I told him that I was grateful for this explanation, and that this will help me in my day-to-day living.  I also told him that one of the reasons this question has been on my mind is because it's summer vacation for the kids, so I've been worried that maybe I'm supposed to quit my job and spend the summer with the kids or something, but I love my job and my kids love camp so...  He smiled really big and said conclusively that it's too soon for that.  Yes!  That's what I thought!  Wow was that ever good to hear.  I assured him that I'll still live with gratitude, and make responsible choices for someone who is recovering from a brain tumor, but I won't live in fear of the ticking clock.  Oooh and this post was a good one to re-read for my current mental grappling. 

These comments about uncontrolled cancer elsewhere in the body made me think about where on earth Lloyd came from.  Since Lloyd was so big (3 cm is big), I wondered aloud if rather than uncontrolled cancer elsewhere in my body, perhaps Lloyd slipped past the last breast cancer treatment and has been growing up in my brain for the intervening three years, protected from the continued Herceptin and Perjeta treatments by the blood-brain barrier and mysteriously not showing up on my quarterly PET scans.  He said that that was certainly a possibility.  (I also remind you, reader, that I am now taking a drug (neratinib/Nerlynx) that is supposed to inhibit all new Her2 cancers everywhere in my body, including my brain.)   

So, I will pick up my optimism from the ground (sorry, optimism--here, wipe yourself off with this Clorox wipe) and stow it safely back in my heart.  What a roller-coaster week of appointments.  So grateful for all of the talented medical professionals in my life, and all of the different strengths they each bring to my care.