As I share these emails, from early July of 2012, I realize this is the last period of time when we were living an “ordinary” life. Granted, my definition of “ordinary” had shifted, given that Elizabeth, my 22-year-old daughter, had already been through one course of chemo for lymphoma and was in remission within five months of her diagnosis; that the cancer had recurred in her brain and her spine only two and half months later; that we were now hoping for the tumor and surrounding swelling to have shrunk enough for a neurosurgeon to implant a reservoir in her head that could deliver the chemo drugs more directly to the tumor; and that Elizabeth was now moving in with me, for a 40 day Healing Intensive so that I could help support and care for her, and so we could together use all the tools we could find or imagine, to invite and facilitate a miracle.
These emails are from the last time that Elizabeth was still the daughter I’d known for 22 years, with much of her strong personality intact. Extremely articulate, a deep thinker with incredible wisdom and confident in many ways. She was beautiful and vain, taking at least an hour to prepare for going out, trying on as many outfits as it took to find just the perfect look for that next event – something she’d been doing since she was 2 years old, along with changing many times every day. She loved clothes and her appearance was one of her great forms of artistic expression, always unique, getting away with wearing things that would have looked odd on most anyone else, but lovely and daring on her. She was also insecure in certain areas, afraid her friends would forget her if she wasn’t able to be present in all her usual ways – hanging out with Samantha and “the boys”, going out dancing and to shows, working as a barista and at a piercing apprenticeship, going to yoga.
She was scared, aware of the challenges she was facing, yet mostly calm. She was willing to take unpleasant-tasting powders and supplements 3 times a day, without complaint, prescribed by the oncology naturopath, use hypnotherapy, guided imagery, and try a “medicinal” raw food diet with very limited foods. She and I had twice-daily “check-ins”, to share and discuss anything that was coming up for us emotionally, and she wouldn’t miss them, even when she was exhausted and dizzy with side effects from the steroids and anti-seizure meds she was on.
She prepared for her second and third rounds of in-patient chemo like the divine warrior she was, making conscious choices to bring a semblance of control wherever she could, creating sacred space in the hospital room, with our own decorations, clothing, food, altars, art supplies and books.
If you are following our journey of last year, these emails are detailed summaries of what our days were like as we moved into a greater awareness of the preciousness of life, and the precarious time we were approaching.
Emails from me to family and friends:
tomorrow (Monday) Elizabeth goes to UMC to receive her 2nd chemo and is expecting to be there til Wednesday, though it could be Thursday, knowing how things run there. She feels well prepared, in all ways. This is the first time she’s getting to pack and bring what she wants with her, rather than coming in with an emergency…
We have a plan in place that I feel excited about – Elizabeth will move in here after getting out of the hospital, for a 40 day healing intensive with me. It will mean eating whole foods, (which soon changed to all raw foods), getting plenty of time together, working with whatever comes up, physically and emotionally, and doing all the treatments already planned, chemo, supplements, other meds, etc..
It does mean I will not go to the Hawaii Retreat as planned (an annual 6 day workshop my partner and I offer, with participants already registered), and Zelie has lovingly and generously offered to do that on her own. It feels important for me to be here with Elizabeth for this time.
On Jul 2, 2012, at 8:04 AM, Elizabeth Blue wrote, to the Nurse Practitioner in charge of her care at the Cancer Center:
Hope you are well.
I wanted to check in about my admission to UMC today (7.2.12).
You had said I would be contacted when they have a bed for me but I don’t know exactly who will be contacting me (You? Someone from the Cancer Center? Someone from UMC?)
Any idea when I might hear from them? And is there is a point when I should contact them someone if I haven’t heard anything? (And who would that person be, how do I reach them etc.?)
Sorry for all the questions, first planned admission seems a bit mysterious. Thank you for your help
On Mon, Jul 2, 2012 at 9:11 AM, Lucia Maya wrote:
great email sweets. we just wait now…I’m ready, will just put the stuff from the fridge into the cooler, so i can be ready in 5-10 minutes at any point…
feels like when waiting for a baby to come… get packed and ready and then wait. Not quite as exciting of course. But each treatment I see as a new birth, moving you into your new self, your new life…
Wonderful, I am pretty much ready too, just preparing the last few things..
Reminds me of waiting for a baby to come too ( :
See you soon.
I’m now realizing Elizabeth has been here in the hospital a few days and I haven’t emailed, because things are going really well…She received chemo the first day, Monday, as her pH level was at 7 when she arrived, which is great. That’s the alkaline level needed for the body to be able to process the chemo safely. She’s also been eating foods that promote slight alkalinity in the body, as there’s some evidence that helps to create an environment that is inhospitable to cancer as well.
So it still took several hours to get started, but she received the chemo in full by Monday evening, and since then has continued to feel well. Once her levels come down a bit more, they’ll take her off the IV and stop the rescue drug that helps the body clear the chemo, so they check again tonight at 48 hours. Assuming that number is good, they check again tomorrow am, and then she can go home. (In order to cross the blood/brain barrier, which protects the brain from being damaged by any toxins entering the body, they had to give her super high doses of the chemo drugs in the hope that they would be so high that they would push through that barrier, and then they needed to clear quickly so they wouldn’t cause damage to the rest of her organs.)
She’s in good spirits, the room looks beautiful as we brought in photos, scarves and favorite items to create her own space. Everyone who walks in loves it! And of course it smells good, because I brought essential oil sprays too…Elizabeth is eating well, slept well one night, not well last night, but still in good spirits this morning. The nurses have been wonderful each shift, really loving and sweet, and the doctor this time also lovely. She’s in great hands.
Also, they are still trying to get a line placed to be able to give future chemo treatment (for one of the meds) and blood draws that way. There’s been lots of discussion, as the veins in her chest have changed due to the location of her first tumor so they can’t place a regular port or PICC line to have ongoing access to her veins . So they’re looking at the possibility of a port in her leg, which sounds like the best option, maybe the only one right now…It’s frustrating because it’s slow, and she’d like some answers, but they are working hard at getting it resolved. No discussion this visit about the reservoir, as they’re waiting for the tumor to be slightly smaller before they can place it. Hopefully before the next treatment, we’ll have to wait and see…
That’s it for now!
love you all, Lucia
7/5/12 from Elizabeth to her Integrative Oncology MD:
I was just wondering if you have received any more information regarding whether or not it is safe for me to try taking the medication you prescribed me for sleep with the anti-seizure medicine I am on.
I have tried taking both the Lorazepam and Clonazepam for sleep (not at the same time mind you) and while the Clonazepam helps a bit it is still not really doing the job. I have not taken the Trazodone yet as I wanted to confirm with you first that this is safe. But with the steroids I am taking as well, sleep has continued to be difficult to impossible and I am becoming increasingly concerned. I am also open to alternative sleep suggestions from natural ones to sleep aids such as Ambien (which they have tried in the hospital and sometimes works). Just getting quite desperate…
I have just finished my second treatment and am being discharged from UMC today which is very exciting. More news to come on how I am responding.
Also: my mom and I have decided to embark on a 40 day (at least) long process of eating lots of raw, whole, home prepared, foods in the hopes of assisting the chemo treatment. I am also very interested in trying a tea called Essiac (been used as an anti-cancer tea since the 1920s), which has been recommended to us by various healers and friends. We are curious if you have any knowledge of this tea and or any opinion on its value, potential or possible negative side effects. Any info or opinions are very welcome and appreciated.
Thank you so much and best to you,
7/5/12 – To a friend:
I have moments when it appears that “this shouldn’t be happening!”, but mostly once I feel that, it shifts to “truly this is meant to be” and there are amazing gifts coming out of this, MANY still to be revealed…
Headed out of UMC today, yay! All went extremely well. Just super tired, last night was almost no sleep and I do not do well with little sleep! but can’t seem to nap either…
Home now.. Elizabeth rested and went to her house to pack, then we’ll go and help load up some stuff… she’s bringing her cat, and hopefully not too much stuff. I’m having a minor meltdown, internally, at least. She moved out in anger at 17, so it feels right that she’s moving back in for these 40 days, doing it consciously, and then leaving in a different way, consciously and deliberately. It brings up all kinds of fear though, that she won’t leave, that she won’t want to, that she’ll be “too sick”, etc..
I feel like so much is unknown in our situation, and yours too, and the tension is the really challenging part!
love you mucho,
quick overview update:
Elizabeth is now scheduled Thursday am for a port, to be placed in her leg vein, (an access site under the skin to a vein, where they can infuse medicine, plus do blood draws, which will make life in the hospital so much easier!) which could take all day, and Saturday afternoon she has an MRI, outpatient. They will see if the tumor has shrunk enough yet for the cranial reservoir to be placed before this next treatment starting Monday.
Saw Sandy (main oncology NP) with E yesterday – she said there was “enormous progress” just from the first treatment, seen in the first MRI, so that was a huge boost, and good news. Her blood work yesterday looked great too. Her white count was normal, and her liver is doing well with the treatment.
Kathleen (our dear friend) drove out for 3 days from Colorado and was immensely helpful – with food prep and teaching, listening, hypnotherapy, playing harp every morning – so many gifts! I told her it felt like our fairy godmother was arriving. I am amazed how much support Elizabeth, and I, have here.
Julianna (Elizabeth’s 19-year-old sister, home from college for the summer) is wonderful, always sweet and helpful, doing food shopping, helping with everything, including her wonderful presence of love.
There’s so much to do every day, we still haven’t got E fully moved in here, there’s laundry, food prep, medical appointments almost every day! Elizabeth is amazing, moving through all these appointments, making healthy food, sitting and talking with me when there’s a lot of emotion to process, working hard at getting sleep (the steroids make that difficult, but working with a variety of things to help, she’s getting maybe 7 hours now, better than the 3-4 she was getting), getting a bit of time with her best friend still, and trying to care for herself body, mind and spirit – it’s a full-time job and she’s doing it with much grace and beauty. Lots of healing happening, of all kinds!
The last time at UMC, the preparation was essential to having a positive experience. We packed food, beautiful things for the room, clothes she likes, etc…and it all takes time, though some is still packed and ready. Getting ready for Monday at UMC, my mom is coming tomorrow night to help, and Tashe (my sister) the end of the month – yay!
love to you all,
7/11 to my mother, arriving for a visit soon:
now I’m having doubts about going to the class Sunday (a raw food class, as we’d now moved into a full-on raw food diet, which we planned to continue even at the hospital)… There’s so much to do every day, Elizabeth was overwhelmed by your simple request for measurements at her apartment (they were going to install some shelving), and is easily stressed to the point of tears. It’s good actually that she’s crying, because that’s been hard for her in the past, and I think an essential part of the healing process.
I talked with Lisa (my pediatrician cousin, as her father and I were starting to explore the possibility of getting a second opinion about Elizabeth’s treatment options) last night, which was good, but put me into overwhelm with possibilities of other options, UCLA pediatric oncologists, etc.
I’m glad you’re coming! and i want to ask that you be as soft as you know how… E’s moving really slowly, and very frustrated by this (though at times seems normal and quick and then gets tired and slows waaay down). It’s hard to watch, and I’m working on patience myself. Really having to move at a different pace…
E’s worried that she won’t be able to do all you, and she, want to do, won’t be able to please you, etc…so gentleness, slowness and patience are all called for now. Thank you for listening to all this!