Grief. 6 years in…

Today is the 6 year anniversary of the day my daughter Elizabeth came home to hospice care, from a devastating week in the ICU. This has been a week of many tears, and some small sense of almost-embarrassment – that it’s been this many years now, and these anniversaries are still so full of emotion. I KNOW that it’s normal and healthy, and no one has ever told me how I should be feeling, and yet I still have some expectation of what this “should” look like. So, I remind myself the depth of the love allows for the depth of the grief. And there’s no right, or wrong, way to do this. And this is what my grief looks like…

This week I’ve been allowing myself to look at photos and video from the time around Elizabeth’s brain surgery, and her time in the ICU, and then right as she came home. I did it each time with conscious preparation, asking myself if I really wanted to watch the videos from before her surgery, when she was telling many of us she loved us, i.e. saying goodbye, knowing she might not emerge from surgery at all, or not her same self, which was largely the case.

Elizabeth Blue, Elizabeth Meagher, non-hodgkins lymphoma, cancer, Tucson,

Elizabeth Blue, day before surgery

This particular anniversary day started very early, with the dog needing to go out, followed by the cat scaring her and not letting her back inside, which meant I had to go out and herd her back in to safety. So I was up early when a client texted with a rare, urgent need for a quick phone session, and before I’d showered or eaten, I talked to her. It amazes me that I can be so present and calm and offer insights and advice to another, while I’m feeling so vulnerable, aware of my own sadness moments before. I love that we have that capacity to shift, and be present for someone else, as well as for ourselves.

This week has also been ordinary – taking Gracie to the dog park, seeing clients, answering emails and watching an Australian Netflix show I’m addicted to (Offspring). I’ve also been remembering so many details from that time: the ICU conference room my family took over, where we ate scones and lattes my mom brought in (from Raging Sage, for the Tucson folks); the acupuncturist who did a hospital visit to treat Elizabeth, with the cool case she carried all her tools in; brushing my teeth and taking out my contacts in a public bathroom on the nights I slept in a chair by Elizabeth’s bed; the night she was given an overdose of some medication, causing some scary symptoms that the next nurse courageously admitted the reason for; the moment when the ICU nurse told me she heard we were thinking of hospice care, which I’m sure was her gentle way of suggesting that, and which angered me, but ultimately brought us a huge gift of two months of peaceful time at home together, with incredible grace and love; setting up the hospice/hospital bed in our living room with soft sheets, and my sister arranging a big vase of pink roses where Elizabeth would see them; not remembering her arrival at the house – was I not there? is that possible? was it overwhelming? I can’t remember…

roses, altar, Elizabeth Blue, Elizabeth Meagher

roses on the altar

Then later this morning, I read that a friend’s husband was just diagnosed with leukemia. Though I know them only through social media, I broke down sobbing, with tears for what they are entering, and what may lie ahead. These kind, lovely people with two children and a life about to change in ways they can’t even imagine…and it reminded me so of that time of Elizabeth’s diagnosis – so raw and wild and surreal. I send them reiki and prayers for grace and ease with all that is coming.

And now, my day is coming to a close – I’m tired, Gracie is tired, (finally) after an hour running at the dog park. I’m going to eat some leftover tofu curry for dinner and watch something that takes me away from my memories, that wrenches opens my heart and makes me laugh…Grateful and feeling peaceful at this close of day.

Gracie, Lucia Maya, Elizabeth Blue, Maui,

Gracie sleeping with her bear

Lucia Maya, Elizabeth Blue,

my toes freshly painted blue today

 

 

 

 

 

 

 

 

 

rainbow, Maui, Hawaii, Hui Noeau,

today’s subtle rainbow

Beginning to Leave the Hospital by Elizabeth Blue

(One of Elizabeth’s essays when she was almost done with her first (and we thought only) round of chemo, followed by her musings on titles and structure for the book she planned to write about this experience. God I love her mind and and am so grateful to have these writings…)

Elizabeth Blue, Elizabeth Meagher, lymphoma

Elizabeth Blue, Spring, 2012

Beginning to Leave the Hospital

March 5, 2012

I feel like I’m only now beginning to walk out of that hospital.
UMC, the day after they diagnosed me.  The day after they told me it was cancer.

I was lying in the hospital bed drugged up on morphine right after surgery (my first surgery) and my biopsy.  I looked at my mom all swollen with makeup running down my face and said to her (smiling) “If it is cancer its going to be ok.”  And she said “Yes.”  And then a few hours later they/the surgeon came to tell me it was indeed cancer.

I feel like only now, approaching treatment six, (the last one please god).  Chemo round one, round two, round three, round four and round five are done.  Whew.  I still feel like I’m in the hospital.

The shock: the utter senselessness and cruelty of being beautiful and twenty-two and having cancer is just starting to wear off and the feeling has begun.  The feeling of having had cancer.  I feel like the shock and senseless and sudden, unprovoked tragedy of it all kept me mentally in the same room it all happened in until now.  Now, six months later, my mind is beginning to catch up with the body that gathered her things from that room, left the hospital, went to school and told her family and teachers she had cancer.  And got on with it.  Took the treatment like a grinding kick in the face and a wet cold punch in the stomach, week after week and sat there quietly and didn’t say anything.  And didn’t yell at god or the world or the doctors for A: letting this shit happen and B: letting the treatment, the cure be so goddamned miserable that it destroyed her feeling and her heart and her youth and made her lose her hair and the oh dear god, fucking pic line.

They called the thing they put in me a Pick Line.  THEY CALLED IT A PICK LINE, WHAT DOES THAT MEAN TO YOU?  They put this tube into my veins and all the way down into my heart and I didn’t want it and I didn’t understand what they were going to do until they already were doing it. They exposed me to way too much radioactivity in the process and sewed it up into my skin like it was no big deal and it hurt, it fucking hurt.

Then there was this big gaping wound and a tube sewn into my body permanently and they forced a long tube into my heart and I didn’t want it and it wasn’t necessary and that was the worst rape I’ve ever experienced.  And I never cried.  I sat there and was good and quiet and cooperative because I trusted that they knew what they were doing and that they could save my life.

And they did.

But me, the real me who talks and has feelings and still can’t comprehend the fact, that cancer was inside of me, that it even could be.  The me that still can’t wrap my head around something so unfair and unpleasant could happen to the blessed child who led a charmed life.  She (that me) is still in the hospital.  Because the shock, the pure and blessed numbing shock of the news that cancer was in me froze her in time.  It froze her so the me who is numb and unfeeling and quiet and detached and removed could take over.  Take the chemo, take the treatment, take the tragedy.  And hold space for the sadness of others.  The me who I generally associate with is just beginning to de-thaw in that hospital room, shake her head and wonder how the fuck did I get here and where do I go now?  I’m hoping, I mean I think, she can come join me now.

(Musings on her future writing…)

Elizabeth Blue, Elizabeth Meagher, lymphoma

Elizabeth Blue, with Blue, Spring, 2012

The Stories We Will Tell Our Children
The journey of a 22 year old cancer survivor

By
Elizabeth Blue

Why this title is important:

Dr. Miller told me on our last meeting that all this would just be a story I would tell someday (an unpleasant one)
The realization that I want children came with having chemo and being told I couldn’t.
My children will exist because I had cancer not the opposite (strange)
This is my history
Buildings, ie hospitals and doctor offices are going to be the transitional and pivotal star points for this experience.  THIS IS THE STRUCTURE FOR YOUR STORY ELIZABETH.  IT HAS ALREADY BEEN GIVEN.  THIS IS LUCKY.  BUILD THE STRUCTURE/SECTIONS/CHAPTERS OF THE BOOK AROUND CHEMO ROUNDS AND HOSPITAL VISIT AND DR. VISITS.
Interview Mom, perhaps others as an example of how narratives vary
talk about trauma theory and troubles with perception
there is a lot here.
Now, should it be a biography or just this story?

Other ideas include:

“High Tales and Desert Winds”
“For My Mother”
“Coming Home”
Mama: How having cancer brought me back to my mother  (The journey of a twenty two year old cancer survivor.)

©Elizabeth Blue, 2012

Anniversaries

Yesterday was June 12.  Last year, June 12 was one of those life-changing, earth-shifting days. That day, we discovered that my daughter, Elizabeth Blue, had a recurrence of lymphoma and that there was now a fairly large tumor in her brain.   I didn’t allow my mind to comprehend the potentially devastating outcome of this, with my usual brand of optimism that can border on denial.  I knew it meant more treatment, more life with cancer, and a loss of the apparent freedom and joy that Elizabeth had had a taste of the past 3 months since she’d finished chemo. I remember going outside in the Arizona summer heat, sitting on a tile bench near the ER, sobbing while sending texts to our close family and friends with this latest news and not caring or even thinking about whether strangers saw me or not. It was one of those surreal moments when nothing seems real, and everything seems so vivid and defined, all at the same time.

For those of you who are thinking this story is too hard to read, with so much sorrow, please know it may be, but I’m sharing all this because only in going into the depths of the pain and sorrow can I also share the incredible grace and love that emerges. It gets much harder, and then shifts into something so beautiful and numinous…

I’ve already shared the emails from earlier in our journey, which you can find under the category of “Lucia Maya’s Email Journey”.  Today it is time to share some of my emails from Elizabeth’s 3rd and final hospitalization. This was initially for a third round of inpatient chemo, but quickly shifted to a time of waiting and uncertainty, as the team of doctors clearly did not know what to do once it was discovered that the chemo was not working, and Elizabeth was having quite a bit of pain.  There was considerable anxiety, as we waited for test results, doctors to come back from vacation, etc…After a few days of discussion, the plan was for her to have brain surgery. This would “de-bulk” the tumor, or in one best-case scenario we heard it could remove the tumor entirely, which we desperately wanted to believe.  At worst it would buy time and relieve the pain she was having.  The plan was to also insert a port into her head (a reservoir) to allow chemo direct access to the tumor and then follow with chemo (trying a new drug) and radiation.  What happened was quite different…

Daily emails from Elizbeth’s admission to the hospital through 2 brain surgeries…

July, 2012 from Lucia to family and close friends:

Tuesday, 7/17/12
Hi everyone –  finally a new (tentative) plan!  Elizabeth waited all day yesterday to be admitted to UMC, which finally happened at 8 pm last night.  Then there’s been a lot of discussion about how to treat her…

Saturday, Elizabeth had an MRI, which showed that the tumor had not responded to the 2 chemo drugs as they’d hoped and expected – it was slightly larger and there was more swelling. So we’ve been anxious to hear what they would recommend.  The first thought was to try a different chemo drug (ARA-C, rather than the Vincristine), and also try to get the chemo directly to the brain asap.

After much discussion, among the lymphoma specialists who’ve been seeing her (Dr Miller and Sandy Kurtin), the neurosurgeon (Dr Lemole), the brain tumor specialist and the attending hematology/oncology doctor here, the newest idea is that the tumor board will meet Thursday am, and they’re discussing a plan to do neurosurgery to actually remove the entire tumor.  If this looks like the best plan, they would hopefully do it this Friday, and would likely follow with some radiation to her brain.

If they decide this is not the best plan, they might then try a different chemo drug.  Surgery feels like a really good option, if the neurosurgeon thinks he can get this all done by surgery!  The hematology/oncology fellow here who presented the idea was very positive and excited about it, and Elizabeth, my mom and I all feel positive too.

So for now, E is off IV fluids (though her new port is working great!), can eat, just taking her meds she’s been taking, and waiting here at the hospital just hanging out, since they don’t want her to lose her room!  They can’t reserve a bed, and want to be sure she’s here to go ahead with whatever plan they decide.

love to you all,
Lucia

7/17/12
Hi,
so Dr Lemole (E’s neurosurgeon) did come in and talk with us, and he’s 90% sure she’ll have surgery on Thursday or Friday, to remove the entire tumor, likely followed by radiation.  We’re still waiting to meet with the radiology oncologist, who may have another idea – if he thinks that the tumor can be removed through radiation alone, then they might not do the surgery, but Dr Lemole thought that was unlikely.  So this plan still feels like a really good one. It does feel like a potential miracle. Elizabeth feels comfortable with it, she was able to ask him all her questions, re risks (relatively minimal), etc.. the tumor is in an area of the brain that is far from any of the areas that operate speech, and other major functions, it mainly has to do with personality , and he feels confident that she’ll emerge from surgery with no serious side effects. We don’t know the effects of the radiation, but will learn more tomorrow.

The issue is that the chemo drugs that usually work are not, and other potential ones seem to have greater risks than benefits, so the surgery now seems like a really good option.  The tumor board will still meet to discuss her situation Thurs morning, but it sounds like all the folks that will be meeting are already in conversation about it anyway…

ok, that’s all for today, what a roller coaster ride it’s been!

love,
Lucia

Wednesday, 7/18 5:30 am
Thank you Sandy, (for her emails telling us there was a plan, and the doctors would be by soon to fill us in)

Dr. Lemole did come to speak with us last night.  Sounds like the surgery option is by far most likely (followed by radiation of some kind) and I personally am very happy with this ‘plan.’  And am truly hoping it works out.  Thank you so much for your consistent responses and involvement (and continued involvement).

Best,
Elizabeth

7/18/12 – in an email to Elizabeth’s father, who was frantically researching doctors to give a second opinion, and/or newer/experimental treatments, as the team here seemed to be unclear and without a lot of hope. None of these other doctors was even willing to consult it turned out, with the lymphoma spread to her central nervous system, or one would see her if she came to California, which seemed impossible given her health:
Hi G,
Let me know ASAP what you hear from Stanford folks…I do know that everyone here has differing opinions and are working as a team to come to the best decision – so I’m still hesitant about bringing in yet another view AND agree that an outside perspective could be helpful. Sometimes more options are good, and sometimes make something clear feel murky!
…I hope they (his parents) also hear about the immense help and support Julianna (my younger daughter, 19 at the time) is tirelessly providing to Elizabeth as well! Don’t know how I’d be doing this without her… I hope they know just how amazing Julianna is!
Thanks.
Best,
Lucia

Thursday, 7/19/12
Hi all,
so Elizabeth had surgery this am already and she’s out of surgery, but I haven’t seen her yet.  some of you got texts with updates…This is just very quick, as I remember from first conversation with the surgeon – details could be wrong, and it could change…

She’s out of surgery and the neurosurgeon came to speak with me – he wasn’t entirely happy.  He was able to remove about 80% of the tumor on the right side, where most of it was, so that’s good.  There was a part that wraps around a vessel that he couldn’t get to, and when he started to remove the smaller amount of tumor on the left side, the brain was continuing to swell, so he needed to stop the surgery.  Usually when you remove tumor, the swelling (which she had) goes down, but in her case it was continuing to swell. So he left an opening with a tube to measure the pressure on her brain over the next few days. They are about to do an MRI scan to be sure there’s nothing else (like a stroke, which is very unlikely) that is causing the swelling.

They will watch the swelling over the next few days. It is possible Dr Lemole will try to do a 2nd surgery to see if he can get more of the tumor, after the swelling goes down – he also said it was interwoven with the brain tissue, so it wasn’t easy to get a clean cut.

The other news is that Elizabeth will definitely need radiation, as they saw another very small spot in the back of her brain they think is an additional tumor, so they will treat that, and whatever is left in the front. And they are talking about trying 2 different chemo drugs for her that they’re excited about.

Just heard they’re moving her from the OR to get an MRI, and then directly up to her room in ICU. She’s intubated right now, meaning a machine will be breathing for her, but don’t know how long that will be.

That’s all for right now, sorry I’m not sharing better news. We’ll have to see how it goes over the next few days…
love and blessings
Lucia

7/19/12 Later that day:
She’s doing well right now, some pain and nausea, but mostly doing well – (they’d removed the breathing tube within minutes of her arriving in the ICU) talking and eating and being herself, though irritable. She’ll be in ICU for another day or two, and not sure how long in the hospital, 3-5 days min from now…

(I had gone home to sleep that night, as she was doing so well, and her dad stayed at the hospital with her.  I got a text in the morning that she was doing great and they were prepping her to be moved out of the ICU! I was making smoothie to bring her and some other food I thought she’d like, when I got another text that Elizabeth had become unresponsive and they’d rushed to her have an MRI and then emergency surgery. I arrived within minutes and she was in the operating room already.)
Friday, 7/20/12
Hi,
some of you got texts already, but Elizabeth had to have (emergency) surgery again this morning.  Her brain was swelling, and she was unresponsive, though she’d just been talking and alert.  They did a scan and found no bleeding,  the surgeon needed to remove a piece of her skull to allow the brain not to be under so much pressure.  She came through the 2 hour surgery well, though she’s still sedated, not awake yet.  Surgeon just here, said it went well, but he won’t want to do surgery again for quite a while, as it seemed that it aggravated things (obviously).

That’s all i know right now.

Thanks for all your love and prayers and support.  She’s always done things differently and no change now…she’s really strong and amazingly courageous.  Will let you know how it’s going later in the day.
love,
Lucia

7/20 Friday evening
Hi all,
it’s 9pm and not much changed since this afternoon. Elizabeth is still not really conscious, and they’re giving her pain meds which are keeping her pretty sedated (a good thing!), but when they wear off she does get really agitated, which is a good sign, that she is responding.  and then relaxes pretty quickly when they give pain meds again.

The surgeon said she still has a great deal of swelling in her brain, which they are trying to reduce with drugs, but that it could take a few days for it to decrease, and likely she won’t be too responsive with this much swelling.  She is able to move her right hand and foot some, in response to requests, but not her left, which makes sense since most of the fluid is on the right side, which controls the left.  She does try to open her eyes when they ask.  She still has  a breathing tube, which they say is quite uncomfortable, another reason to keep the pain meds going…they might remove it tomorrow, depending on how she’s doing – they want to be sure she can breathe well, plus clear her throat on her own, swallow, etc..

This has been the hardest day so far by a lot. It’s really hard to see Elizabeth in pain at all, not responsive, and her head is quite swollen now from the surgery, which apparently they expected yesterday, but it hadn’t happened…so she doesn’t look entirely like herself.

We also learned today that once she’s moving around, she’ll have to wear a helmet to protect her head whenever she’s not lying down, and this will be for 3-6 months, until they put the piece of her skull back (which is in the deep freeze)!  You all can imagine how much she’s going to like this news – Greg suggested we try to find a Chanel helmet…(This seemed like it would just devastate her, even more than losing her hair, to be visibly so different in this way, it was hard to imagine her coping with this!)

They will wait to see how she’s doing before deciding if they’ll follow up with radiation or chemo first, as each has different side effects, and depending on her symptoms, they’ll decide.  Hopefully she’ll be able to go home first, before she gets her next treatment and recover from the surgery.

Please keep the prayers, love, healing energy coming, as I know you are.  It’s still not clear how the recovery will go from this surgery, though very likely she’ll have full capacity once the swelling comes down.  And then she’s looking at some intensive treatment, again.

I’m exhausted, surprised I can write this much, but find it helps me to sort it out in a linear way, making some sense of all of this. It also connects me with all of you, which I really need right now.  Thank you for being here. and there.

My mom, Greg, and Julianna are all here and wonderful to have them all.  Greg or I have been by Elizabeth’s side every minute almost, and it is so good to be close to her.
love and blessings,
Lucia

Jul 20, 2012, Friday at 10:29 PM, Lucia Maya wrote (to a friend, S):

Having a hard time today being in gratitude!  i know that’s not unexpected, but I’ve been able to be mostly til today.  This just sucks. I see her either coming through this with magnificence of spirit, with just an amazing, inspiring story to tell – (she had just told our friend Celia that she wants to apprentice with her as a shamanic practitioner the day before the surgery), or deciding her soul is ready to go, but it doesn’t feel like that right now.  She’s sure going for the intensity!
love,
Lucia

Saturday, 7/21/12
Hi all,
Better news this am: Elizabeth was able to respond to my questions with a nod or shake of her head! So exciting! They’re doing a trial to see how she does breathing on her own, and if that continues to look good, they’ll take out breathing tubes…she is breathing, but they want to see certain numbers (CO2 levels ok) before they go ahead. And she’s able to move her fingers and toes in response to requests too. Still harder on the left side, there’s still a lot of swelling. But definite improvement. Let’s hope she continues steadily in this direction…I did Reiki on her all night, so maybe that helped, along with all the meds!

Her right eye is swollen shut, she looks like a boxer who had a hard fight, and she is super strong!

She was just able to lift 2 fingers on her right hand when the doctor asked, so he was very happy…the swelling (in the brain) is decreasing.  So glad to be sharing better news this am. really hoping there’s more soon.

Thanks for your prayers and love. it’s all helping.
love,
Lucia