Monday, November 19, 2018

It's begun!!

Oh man, where did we leave off?  Seems like so much has happened since my previous post!

So...I started whole-brain radiation today.  Yes indeed, already.  Getting Lloyd under control without further ado!!  Dr. Radiation Oncologist's office called me yesterday, on a Sunday, at 11:00 am, to tell me that they had completed the radiation plan and were ready to set up an appointment for treatment on Monday, what time would work for me?  After sputtering for awhile, I agreed to take the 11:30 appointment.  It was a somewhat jarring phone call!  Certainly not something I expected after finishing my brunch of egg and mushroom scramble.

The radiation treatment is interesting, albeit a little bit freaky.  Here's how it works:  I lay on the platform, they put the mask over my face/head and have me scoot around a millimeter at a time until I get positioned just right.  Then they move the platform until I'm lined up with some red and green lasers to get the coordinates just right for the treatment, then they take a scan (I think it's a brief CT scan of my head) and tell me that everything has lined up perfectly, and I make a joke about how if I could move the tumor I would have done so a long time ago so of course it's lined up perfectly.  Then they re-position my platform for the radiation.  My hippocampus-sparing radiation plan includes 9 fields of about 30 seconds each, so the whole thing takes about 20 minutes (after factoring in the time for the re-positioning of the table and equipment between fields).  The freaky parts:  1) some of the fields caused me to smell an ozone smell, and 2) some of the fields caused me to see bright, flashing blue light with my eyes closed.  If I opened my eyes, I couldn't see the blue light anymore. Super weird!  My own personal irradiated brain disco party.  Question for B, my bonus mom:  Can you explain the blue light thing?

Delightful part of radiation treatment:  I was treated by one of the dear nurses who took care of me back in the day of my twice-daily chest wall radiation, and she remembered me.  She gave me her arm when she called me from the waiting room, and ceremoniously walked me back to the treatment room.  Also, I had forgotten to take off my glasses, so she removed them from my face, and I apologized that she had to touch the dirty things.  I hadn't properly washed them since Puerto Rico, and the saltwater splatters made them look rather gross, I'm sure.  After treatment, before she handed my glasses back to me, she cleaned them with a proper lens-cleaner towelette.  Then she again gave me her elbow to walk back to the waiting room.  This is above and beyond!  And I'd like to emphasize the power of touch--after a big hug from the spouse, followed by taking the nurse's arm to walk back to the treatment room, I certainly walked a little bit taller and felt a little bit more confident about what I was about to endure.

After radiation treatment I went up to get my blood drawn and have an appointment with Dr. Oncologist.  She presented me with all sorts of great results:  my bloodwork was perfect, my bone scan was all clear, and my PET scan was all clear!  Huzzah huzzah!  No cancer in my body below my brain.  Huzzah!  SO, we are on the correct course of action to control my single pesky tumor (whole-brain radiation) and we'll discuss other Lloyd-control measures after the whole-brain radiation is complete, which will be in 2 weeks--I have treatment every day for 10 business days.  1 day down, 9 to go!

How do I feel now?  Mostly fine.  I have a headache, and I'm tired, but the magnitude of these things is not that much different from yesterday, for example.  My cheeks are kinda hot so I wonder if a fever is coming but I don't feel feverish, and my eyes are very heavy, but let's acknowledge that this was an EPIC day where I had to be all three of my selves (mom-scientist-patient) for at least a few hours each, so it's hard to blame any of these symptoms exclusively on whole-brain radiation.  And yes the part where I was a patient was stressful and hard and seemed to last forever!

My simultaneous tiredness + the need to update my loved ones (you) inspired a new thing, which is blogging from bed.  Thanks to the family elves I now have extra pillows on my bed for proper propping, so I thought I'd give it a shot.  I will definitely not make a habit of this!  I think it would be better and more comfortable and more efficient to simply own the fact that I need to blog/type and then sit in a proper chair with a proper table or lapboard.  This blogging-in-bed thing confuses the two tasks of writing and resting.  And the slow, slipping slouch is a real problem!  I don't know how the laptop-in-bed people do it! 

Time to be done with the blogging and phase-switch into sleeping.  Goodnight!  Be well!  Oh, and it looks like technology is working so I'll leave you with a Puerto Rico picture.  Sigh.  Those were the days!  ;)

The Allens on Condado Beach in San Juan, Puerto Rico, Nov. 2018.


Wednesday, November 14, 2018

My hair is on the frontlines again

I have previously written about how my hair is the first part of me to know that I have cancer.  Well, sounds like I'll be losing my hair again this time, and it sounds like it might come back or it might not.  Previously irradiated parts of my body have not regrown hair (my armpit was collateral damage in chest-wall radiation--it's half hairless, which is not a bad thing lol), so this might be interesting, but certainly something I can work with.

So, whole brain radiation.  It'll be once per day for 2 weeks, and it could start as soon as Monday but we don't know for sure yet.  Depends on how long it takes the dosimetrist and physicist and radiation oncologist to make the plan, and they'll take their time in order to come up with a plan that is the most protective of the precious parts of my brain that are most in danger by this procedure, namely the hippocampus.  Plus, next week contains a holiday, so there's something tidy about starting the following week.  I'm not in any rush.

The reason for whole-brain radiation and not stereotactic radiosurgery (SRS) again is that SRS is a whopping dose of radiation, and the risk of causing terrible brain damage (high risk of necrosis and stroke) in the brain adjacent to Lloyd is very high if we were to try SRS again.  We know this from patients who have gone before me; thank you brave patients.  Whole-brain radiation is a lower dose of radiation over a much greater area and will hopefully kill off Lloyd's growth for awhile.  Probably not forever, guys.  That's the part of today's consultation that surprised me.  I guess I had been naively thinking that the SRS treatment could and would kill Lloyd forever, and then again that whole-brain treatment could and would kill Lloyd anew, again forever.  I mean, I have no expectation that I'll live forever, but I was clinging to the hope that Lloyd could be controlled and then I'd just be waiting for the next cancer, like I'd been living between the breast cancers.  I suppose in a way that's what this last year has been.  But no, the chance of Lloyd being killed for good by whole-brain radiation is only like 15-30% (the range is because I don't remember what the doc said, and I didn't write it down, but it was something like this.  Less than 40%).  The success rate of SRS was supposed to be 95%, which should have been phenomenal odds...but here I am, with an undead brain tumor that'll kill me in the next 6 months if left untreated, but will still probably kill me in the somewhat near future even if we treat it now in this way.  Ugh.  Time to put that information out of mind!  I've never been a fan of survival statistics, and need to remind myself that I've already done a great job of surviving.

I already told you about the hair loss, but what are the more serious risks of whole-brain radiation?  Well, there is a 40% chance of permanent short term memory loss.  Dr. Radiation Oncologist said that it's not like alzheimers, but it is a nuisance, and it takes awhile for patients to learn to live with it.  Everyone devises their own tricks.  He said that navigation can also become an issue.  He assured me that I'll still be able to work, and that I'll still be able to learn and process things, I just might need to employ some new tricks to get items into longer-term memory storage.  I might need to rely heavily on lists and note taking, for example.  Heck, I already do that.  But in all seriousness, this is when things started to sound a little bit scary to me!  So, thanks in advance for your patience and assistance if this happens to me!!!  Also, thank goodness for smartphones.  It seems that that could make short-term memory loss more bearable, as a helpful tool to make all sorts of lists all the time.  Also, Alexa:  "Hey Alexa, in 20 seconds remind me that the reason I went to the kitchen was to make some tea."  Ha!  Funny not funny.

Bright point #1:  there's a drug that I can take, memantine, which is an alzheimers drug that has been shown to decrease the chance of short-term memory loss in patients like me.  So we're gonna try to get our hands on that little gem.

Bright point #2:  I don't have to increase my steroid dose!  We're going to try to maintain the dose I'm on during the whole-brain radiation and see how I do.  Huzzah!!  I was fully expecting to have to step back up to 12 mgs, if not more (they started me at 24 mgs in January!!).  I'm currently at 2 mgs at breakfast and 1.5 mgs at dinner.  Go me!!!

Bright point #3:  I have to have a new mask made for my whole-brain treatment, and it won't be as tight as the previous mask.  ALSO, it'll prevent me from needing face tattoos (for lining up the treatment the same every time--have have three tiny tattoos from the chest wall radiation, and it's nice that won't need head or face tattoos).  Huzzah!  Mask making will happen tomorrow.

Bright point #4:  The infusions mentioned in my previous post are still on the table, but they won't start until after the radiation treatments.  And I won't know more about that until Monday's appointment.  Huzzah!

Bright point #5:  After my bone scan today, I took the elevator up to the external relations department to learn about how to make a donation to my medical center, as the Allen family pledged to do as a result of the Carnation Nation Appreciation party.  I found out that it's super easy, that we can direct the money to a fund that is designed for patients who need monetary assistance to manage their care (such as gas money, etc.), and that I can give our donation in honor of members of my "care team".  So we can donate in honor of Dr. Oncologist, Dr. Radiation Oncologist, and the nursing teams and support staff, etc., and the Foundation will host a scheduled surprise ceremony for them that my family and I will be invited to attend.  I was very excited by the fact that the donation can be in honor of the people who have kept me alive this long!  This seems like a terrific way to honor them!!  Thank YOU, Carnation Nation, for making this honor possible!   

Bright point #6:  We were in Puerto Rico last weekend!  And it was the BEST!!!  I'll have to post photos some other time because the blog doesn't seem to be accessing my Google albums right now--technology fail.

Bright point #7:  I'm not sure if these folks or their efforts want to be called out on the blog, but you GUYS.  While we were in Puerto Rico, some Family Elves broke into my house, cleaned it, painted two rooms that Ian and I were just barely starting the plan for painting, rearranged the necessary furniture, and did some light redecorating (i.e., new bedspread to match the paint job).  The rooms were the master bedroom and my 9-year-old's (E's) bedroom.  Our flight got home late Monday night, and we walked into BLISS.  It was like an episode of something from HGTV!  The elves even had placed fresh flowers on the dining room table, and breakfast foods in the fridge (we had depleted the groceries before our trip).  AND mulched the leaves in the yard.  AND washed and folded the laundry.  I'm sure I'm forgetting something, but it was seriously unbelievable, especially now considering the somewhat stressful week we're being thrown into.  It was hard to get E to settle down and go to bed, she was soooo excited about her new digs!  THANK YOU, family elves!  You sure do make living with a brain tumor possible, and you make life WORTH LIVING.  I am the luckiest girl!!! 

Bright point #7:  I've found some terrific inspiration from my old self today.  Like here.  I'm grateful to myself for maintaining this blog for so long!  Huzzah!

I found this quotation elsewhere on my blog, when I was looking for something else (I've forgotten what I was looking for, and treatment hasn't even started yet, lol).  Seems like a good day to play it again:

"Why couldn't they just stop complaining so much, just let go and see how good they actually had it?  Everyone seemed to be waiting for something to happen that would allow them to move forward, waiting for some shadowy future moment to begin their lives in earnest." --Lucy Grealy, Autobiography of a Face

I need to make sure I'm not waiting to feel better, or for Lloyd to be good and dead, because perhaps those things won't happen.  I don't think I'm waiting, but this is a good reminder on a day that I have allowed to be a crummy day.  :)   

Monday, November 5, 2018

Short update

We won't have a firm plan for 2 weeks, which is when I see Dr. Oncologist again.  Before then, I will have a PET scan and a bone scan to determine if there is cancer lurking elsewhere in my body.  I don't think there is, and of course I hope that there isn't, but if there IS the good thing about that would be that she could biopsy it and see what its receptors are.  Because we are treating Lloyd in the absence of knowing for sure what its receptors are.  Our assumption is that Lloyd is Her2+ like my breast cancer was, but Lloyd could be something different, or at the very least is quite possibly something different now after being irradiated.  

I will also see Dr. Radiation Oncologist in the next two weeks, and he is one of my favorite Drs. for answering all of my questions.  Although I don't even know what my questions are yet.  What a whirlwind!  

Dr. Oncologist today was terrific, and she has at least 4 possible treatment plans.  She said that she's pretty certain that whole-brain radiation will be a part of my treatment plan to kill Lloyd's slowly growing undead appendage.  She also has some infusion drugs to offer me, including Avastin and irinotecan.  Or possibly some other drug (sounded like "zolata", but google is coming up empty with that) + neratinib, the last of which I'm already taking.  And she had two other combos of these drugs that she mentioned, but she is going to do some more research before making a decision.  ALSO, presuming that Lloyd is still Her2+, she thinks that the neratinib isn't working, so she's not too keen to continue it.  

Now I'm going to leave all of this uncertainty here in the Midwest for a few days and go wiggle my toes in some warm sand.  

Sunday, November 4, 2018

Undead

I've been debating about whether or not I should write today, or wait until tomorrow to write, but I don't think that I'll have time to write tomorrow so I've decided to unload on the blog today, even though I might have more updates tomorrow.  On Thursday I had an MRI scan of my brain, and the pictures showed that 1) I have no new tumors, huzzah, 2) the swelling is unchanged from my last scan two months ago, bummer but I could have told you that because I'm not feeling any better so this was validating, and 3) Lloyd has a pesky little region that is a little bit bigger than the previous scan.  The change is so small that Dr. SRS Expert even said it could be due to different planes being captured by the imaging.  BUT apparently it looks like that pesky little region has a blood supply, too.  Grrr...  When I met with Dr. SRS Expert on Thursday after the scan, the radiologists hadn't yet read the MRI, so we didn't have the blood flow (perfusion) result yet.  Dr. SRS Expert therefore spoke to us in terms of options rather than plans, and included options in case it was determined that the reason for the increased Lloyd size was necrosis.  He called me on Friday to give me the blood flow result, and when I said, so this is a bummer, right?  (SRS-treated brain tumor with a region that is not dead and indeed is growing (albeit slowly) seems like a bummer to me.)  He said it doesn't change anything we talked about on Thursday, and for example he's not going to rush me into any treatments next week or anything.  Then he said that he'd call Dr. Oncologist, who I see on Monday.  Options discussed on Thursday include whole-brain radiation (it is noteworthy that he cringed when mentioning that option...I think we must have all wanted the increase in Lloyd size to be declared necrosis-related), and perhaps Dr. Oncologist will have other medicinal options (i.e., chemotherapies).  Or I could go back and talk to Dr. Brain Surgeon.  Needless to say, I do not yet have a plan, just a partially undead Lloyd in my swollen brain. 

I asked about the drug Avastin, which was mentioned last time as a treatment option.  Apparently that is only an option if necrosis is suspected and would do nothing to treat tumor growth. 

I've had an excellent family weekend, lots of playing with the dog, knitting, and hanging out with my kids and spouse.  We did a family room re-arranging project together, which was of course a lot of work but REALLY great to work together.  The spouse and kids did all of the furniture moving; I sat in a folding chair, cleaned stuff, and managed the playlist.  ;)  ALSO, BIG FUN NEWS, we are going to Puerto Rico at the end of this week.  I've never been to the Caribbean, and after I ruined our Minnesota lake vacation in July, I thought that we needed a do-over.  The kids have a 4-day weekend due to parent-teacher conferences that sneaks up on me every year in November, resulting in lots of swear words because I am typically forced into lame childcare options due to poor planning.  So, this year, I booked this trip for the conference weekend, and wow is the timing ever terrific in light of last week's MRI.  I just want to sit on a beach, maybe take some time to be mad and sad and throw some sand at a sea turtle or something, and then find my way back to a grateful, fearless, blissful state of mind.  So much to be grateful for.  I'm not afraid of an undead Lloyd.  

I haven't blogged in awhile, so what else is going on?  How am I doing?  Well, about the same, which is why I haven't blogged.  Haven't had anything to say that wouldn't sound like a broken record.  The good news is that I have been very successful with decreasing my steroid dose--I've gotten alllll the way down to 2 mgs in the morning and 2 mgs in the evening.  Would LOVE to get off the roids, but Dr. SRS Expert says that it's the only thing keeping the swelling under control, and he'd rather not have to re-start me at a high dose (like we did in August) and work our way down again.  So, my goal is to get down to 1 mg in the morning and 1 mg in the evening over the next month or two.  That sounds easy compared to what I've already achieved.  

Oh, and I want to share a lovely thing with you.  At a recent yoga class, I learned a mindfulness meditation that I have been saying to myself, to my family, and to you.  

May I be happy.
May I be healthy.
May I be mindful.
May I be content.
May I live with ease.

May you be happy.
May you be healthy.
May you be mindful.
May you be content.
May you live with ease.

Tuesday, October 23, 2018

Get your affairs in order


I was contacted by someone who wanted to guest-post on my blog in regards to legal documents that a terminally ill patient ought to get in order.  That is a very important issue, and so I agreed to host an article.  Below is the article, which I think contains very helpful information for anyone, really, because no one knows when or how they are going to die.  Please note that this is not an endorsement of any particular company or individual mentioned hereafter.  

5 Essential Legal Documents for Breast Cancer Patients
By Ann Cosimano, ARAG’s General Counsel

When you’re diagnosed with breast cancer, one of the most important things you can do is educate yourself about the legal aspect of health care decisions. You’ll want to make sure you have all the necessary legal documents in place so that your medical wishes are clearly laid out for your medical team and your family.

Sometime in the next few weeks, for Breast Cancer Awareness month, take time to learn about these five legal documents every cancer patient should understand have in place.

1. Health care power of attorney

What is a health care power of attorney?

A health care power of attorney is a document in which you designate an individual – your “agent” – to make medical decisions on behalf of you, the patient. This decision-making power is limited to periods of time when you’re unable to make and communicate decisions on your own.

Why is a health care power of attorney necessary?

Without a designated representative, decision-making authority is determined by state law. This means that treatment and care decisions may be left to groups of people, such as children and siblings, or to individuals with whom you no longer communicate.

What else do I need to know about a health care power of attorney?

Although it may sound like a logical choice, your doctor can’t be your agent. But the person who is designated health care power of attorney can talk with your doctor for medical guidance. The health care power of attorney document only applies when you’re incapable of making and communicating your decisions. When able, you can amend or revoke the power of attorney.

2. HIPAA representative

What is a HIPAA representative?

The Health Insurance Portability and Accountability Act (HIPAA) is a federal law that helps protect the privacy of patients. Doctors, hospitals, health care providers and insurance companies are required to follow HIPAA rules. This means they can only share medical information with the patient or the patient’s personal representative, as dictated by this document.

Why is a HIPAA representative necessary?

Without this document, your caregivers may find themselves without access to your medical and insurance information. This is especially true if the caregiver isn’t related to you. When your caregiver can’t access treatment details, it can make patient support for necessary care such as chemotherapy and radiation difficult.

What else do I need to know about a HIPAA representative?

A health care power of attorney is considered a HIPAA authorization, but it’s limited to the periods of time when you’re unable to make and communicate health care decisions. A separate HIPAA authorization ensures access during other situations.

3. Living will

What is a living will?

A living will (also known as an advance directive) details your wishes regarding end-of-life care. This document goes into effect when you are in an end-of-live situation such as having a terminal condition or are permanently unconscious and you’re incapable of making your own decisions.

Why is a living will necessary?

Without a written directive, life-sustaining treatment will continue when you can’t make decisions for yourself — even if the treatment and procedures go against your wishes.

What else do I need to know about living wills?

Each state has its own laws regarding living wills. State laws may allow living wills to include directions on artificially provided food or hydration, end-of-life decisions addressing life-extending or life-saving treatment, pain medication, consent to an autopsy, organ donation and disposition of bodily remains.

4. Durable power of attorney

What is a durable power of attorney?

A durable power of attorney names an individual to manage your financial and personal affairs. This document allows your agent access to financial accounts and gives him or her decision-making authority.

Why is a durable power of attorney necessary?

You might want help managing your finances while you’re receiving treatment or hospitalized. Common needs include access to bank accounts to pay bills and care for children.

What else do I need to know about a durable power of attorney?

There are limits to the authority of this power. Your agent cannot change your will, various types of trusts or designated beneficiaries of life insurance policies and other assets.

5. Last will and testament


What is a last will and testament?
A last will and testament is a document that outlines final directions for who will receive your assets, real estate and personal property when you die. The will also identifies a person (executor) to carry out your orders and a person (guardian) to care for any children under the age of 18.

Why is a last will and testament necessary?

Without a will, state courts will determine what happens to your assets, possessions and children. This is why creating a will is so important — for everyone.

What else do I need to know about last wills and testaments?

A will can be changed and updated as life changes. As children grow or your health improves, the will can either be revised (with an addition called a codicil) or a new will can be created to reflect new situations.

Talking about these vital documents can be difficult. No one wants to focus on worst-case scenarios. But these important legal documents are a way to make sure you are in control and can rest assured that your wishes are followed, no matter what happens.

Ann Cosimano, ARAG’s General Counsel, directs the company's legal, regulatory, compliance and attorney relations departments. ARAG is a leading provider of legal insurance giving people and their family confidence and protection to handle life’s legal issues. ARAG partners with attorneys to provide essential legal services ranging from writing wills to representing clients in a lawsuit. Ann can be reached via e-mail at Ann.Cosimano@ARAGlegal.com.

Sunday, September 23, 2018

Chill out

In the days that followed my MRI, I had appointments with my local oncologists as well.

Dr. Oncologist has been oddly cryptic lately.  At this most recent appointment we talked about diet again, and she made sure I was still eating legumes (beans, lentils, etc.).  I said oh yes, I most certainly am, because they are relatively high in protein and have so many good things in them!  But she didn't make clear why this was important to her, so I'll have to ask next time.  When I told her about my struggles to get off the steroids, she asked me what I was afraid of...?  I told her--nothing!  I have no new tumors, my old tumor is dead, I don't have any fears right now, honestly.  I'm not afraid of getting off the steroids; in fact I yearn to be off of them!  I'm carrying around so much extra weight it's like being pregnant again.  It's exhausting!  But I can feel brain-swelling pressure on my inner ear even right now, guys, and this is after a good night's rest and an "anti-inflammatory" and protein-rich smoothie for breakfast, so I don't think that today is a day to cut my dose at all (I'm at 3.5 mg in morning, 3.5 mg in evening, so I HAVE made a tiny bit of progress.  I was at 4 and 4 when I had all of these Dr. appointments.  Oh!  And I requested smaller-dose steroid pills, so I'm no longer turning my 4 mg pills into dust.  I have 4 mg, 2 mg, and 1 mg pills, plus a pill cutter.  Fun times.).  OH!  And she reminded me to not be too stingy on the sugar reduction, because the brain runs on sugar.  I assured her that I was still eating fruits, and sweetening my smoothies and salads with dates, as well as not being into total deprivation.  I've just cut the crap!  And once you cut the crap for a few days, it's easier to say no.  I'd say the hardest thing to cut that I didn't even know was so sugary was my favorite yogurt.  Oooo I loved the Brown Cow cream on top yogurt!  I've completely switched to FAGE Greek yogurt, because it's 24 g protein per serving, and it was a challenge but now I actually like it.  With dates and things, of course, but I'm getting there.  ;)  The other thing that my colleague and boss, Dr. Immunologist, reminded me about is my little blood-brain barrier crossing chemo drug, Nerlynx/neratinib, that is fighting cancer cells in my brain and body every day.  How is that impacting the brain swelling?  I asked Dr. O about this, and of course her response is that there is simply no data.  We have no idea if or how the Nerlynx has an impact on the current brain swelling situation.  Yet another variable that I can't control. 

Next, I had the best conversation with Dr. Radiation Oncologist.  I asked him what he thought of the MRI result?  And he said that he had only got the written report; the fancy hospital down the road isn't connected to the same handy image network as pretty much everyone else.  So I showed him the picture I snapped, which I forgot to show you in my last post.  Here it is:

On the left is a frame of my brain from Sep. 2018, with the swelling being shown as the white cloud on the left upper part of the brain.  On the right is approximately the same frame of my brain from July 2018, with the swelling in the same location as the pic on the left.  See, even with August's worth of steroids, the swelling was not impressively reduced!  You can't see Lloyd/Pearl because the tumor is in a different frame.  I didn't take a picture of that because it's unchanged. 

He did not have any new interpretations to add, so I asked him my basic questions about how long can this continue?  What else can I be doing to help myself?  etc.  His responses matched everyone elses (the swelling could continue for years, steroids are the right thing to do but yes we also need to try to get off of them, listen to my body and step down the dose when I can but I'm right in that keeping the swelling down is top priority), which is extremely reassuring, but he added some catchy tidbits that I've latched onto.  One thing he said that I love is that, "Simple is not the same as easy."  It is theoretically simple to step down my steroid dose, for example, but it's not at all an easy thing to do.  I liked this phrase because on paper, this whole healing-from-SRS-treatment looked like it was going to be ridiculously simple, and although that might BE true, it's been far from easy.  What I'm doing is not easy, despite the fact that it seems so simple to me, and this simple-is-not-the-same-as-easy framework has further helped me to embrace rather than fight my bodily struggles in the past week (which, as we know, I've been struggling to embrace for months! I'm still not there yet, lol.).

I also followed up with him about Dr. O's weirdness about steroids and fear.  I asked him, what on earth SHOULD I be afraid of about coming off the steroids?  He told me some of the side-effects of long term steroid use (diabetes and a bunch of other things), and I said, but all of that is the lesser of two evils compared to the potential side effects of brain swelling, right?  And he said, right!  So, in hindsight, I think that Dr. O was making a query into my mental health more than making a commentary on the steroids.  That's fine, just confusing for me, lol.

Then we lightly discussed the things I've been discussing with all of the Drs. on my team at these appointments:  do they have tips or tricks for me to figure out how to best balance diet, exercise, rest, and life whilst reducing the brain swelling?  (I want so badly to help myself!  I'm a do-er, and being a do-er has led to my success in pretty much every other life experience I've ever had!)  He has no answers either, but he administered the following advice, "in the words of my daughter, chill out."  So I've been trying to do that!  I've been trying to turn off the analytical mind when it comes to my recovery and just let my body be.  I've received this advice before ("less striving, more floating") and I think it's just really hard for me to execute this.  So...I'll keep working on it, without TRYING to work on it, lol.  My preliminary solutions to get me into this "chill out" or "floating" recovery space are to do more knitting, and more cuddling the girls (for some reason, they've been requesting cuddles lately outside of bedtime hours, so it's perfect).  These are two easy and delightful things to ante-up in my daily life, perceived task list be darned.

Saturday, September 8, 2018

So how's my brain doin' these days, anyway?

On Thursday I had an MRI and consultation with Dr. SRS Expert/Radiation Oncologist at the University Hospital down the road.  Per usual, it was a lovely road trip with my dad (thanks again for picking me up, dad!  It sure was luxurious to rest on the drive home!!).  The MRI didn't show anything that my body wasn't already telling me, but it sure is validating to see the pictures, and most importantly, it's terrific to have the opportunity to talk to the doctor.  In summary, the two important results are 1) Lloyd continues to be dead, with the following being my favorite things in the report, "The previously described heterogeneously enhancing metastatic lesion is overall stable in sizeNo new lesions." and 2) swelling is slightly decreased but still pretty bad.  I could have told you that, lol.  I feel it daily. 

SO, more on the swelling!  We had lots of questions for the Doc on this one.  If Lloyd is stably dead and not growing, what's up with the swelling?  Why is my body continuing to mount an immune response up there???  Potential answers, in no particular order:  1) A few stray cancer cells could be mucking about, and my immune system is trying to catch them, 2) Extended swelling like this is more commonly seen when the tumor is in a location such as mine, close to the spinal column, 3) It's not uncommon for this to go on for 2 years even!  Wow. 

Taking steroids is the primary thing to do to combat the swelling, and yet alllll of my physicians are wanting me to get off of the steroids, even Dr. SRS Expert (I mean, I'd like to be off of them too...).  I tried the steroid step-down he prescribed last time (12 mgs daily for 1 week; then 8 mgs daily for 1 week; then 4 mgs daily for 2 weeks).  I'm stuck on 8 mgs per day.  Twice now I've tried to decrease the dose, with noteworthy awfulness.  Not only do I feel terrible the day after I decrease my dose, but I have a few minor neurological symptoms now!  If the swelling gets too bad, I have tingling/numbness on my forehead, the tops of my hands, and my right pinky.  I don't care for any of that specifically, but I especially don't care to get started down the road of long-term permanent neurological side effects, so I'm not rushing the steroid step down until I have some REALLY good brain days.  And each day is different, so I have no idea when they'll come.

He did mention that depending on where we're at with swelling and steroids, there IS another drug we could try.  It's called avastin, and I haven't spent MUCH time researching it yet, but here's a popular press article that conveys what I feel is sufficient information to get us started.  In the article it's used to combat necrosis, which doesn't seem to be my problem, but there are also other articles showing that it's been used to combat swelling (edema).  I didn't link to those because I found them to be harder to read.  It's an IV drug, so it would be administered by Dr. Oncologist on some schedule or another.   Point is:  OPTIONS.  There continue to be options, huzzah! 

My next MRI is in ~two months.  I'm sure that my body will make some more progress between now and then! 

The steroids are particularly hard on my quad muscles, steadily making my body weaker and weaker.  Dr. SRS Expert reminded me of this (not that I need ANY reminders of this, lol).  I told him how hard I'm trying to not to get terribly weak: I walk the kids to school 1.4 miles roundtrip daily; 30 min. aerobics in living room almost daily; yoga class once per week; 15-30 min. yoga at home almost daily; choose to take the stairs in tall buildings (when I can find them).  He gave me a "good job"!!!  I didn't realize how much I was in need of this affirmation!  He said something like, "I like how much you're exercising."  Yay!  I figured it was good for my brain by promoting oxygenation, but it was still nice to have a medical professional endorse the exercise routine that you are undertaking when your brain feels like it weighs 40 pounds!  And on the bad days, I don't push it.  I listen to my body.

The other thing I'm trying is diet.  I have avoided the diet/homeopathy rabbit hole because the data just aren't there, and why give myself another source of stress.  But one place there seem to be data are on low sugar diets helping kids with epilepsy to have fewer seizures.  I'm being VERY non-scientific here, but I'm not a kid with epilepsy or even an adult with seizures, but cutting sugar isn't a hard thing!  And it's something I can do with relatively low-stress.  I talked to Dr. Oncologist about it at my last appointment about a month ago, and she was on board as long as I didn't cut all carbohydrates.  No ketogenic diet for me, just high protein and cut the processed sugars.  Clearly I still have lots of brain swelling so this is not a slam dunk solution, but it's something I can control and that feels good.  Also, avoiding processed sugar is a good thing for all sorts of reasons.  Oh, and I added fish to my diet.  Fish is high in omega 3's fatty acids, which are good for brain health.  So I'm now a pescatarian instead of a vegetarian, and I rather like it!  Fish is pretty tasty!