





I wake up with so many things to say, and I am grateful that this blog is finally up and running so I can start sharing all that is going on inside of me.
But first, I think I should bring you up to date. I had an overnight at the hospital this week.
Background: Since I was discharged from Martha Jefferson after my initial night at the ER I’ve been at home. Home is great – warm, cozy, safe and very, very comfortable. In the past two weeks I have established an amazing routine of getting up early and tending to my spiritual and physical needs. I’ll share more about this another time.
The problem has been that sometimes I don’t feel great, and the big question has been whether this has been because I’ve been having more seizures or not. It is important for my medical team to stabilize my seizures before surgery – they don’t want me to have one while they are operating. It’s also important for me psychologically – the seizure I had the night at the ER was not a fun experience. It was scary, and I don’t want to feel that way again anytime soon. The problem for me has been that it is hard to distinguish whether the symptoms I’ve been having in the last two weeks have been seizures about to happen, side-effects of the medications I am on, or just some more of the weird muscle spasm-y things I’ve been dealing with for years.
They decided to admit me to UVA hospital on Thursday to find out. Rather than simply call me in for a two-hour scan and hope to see what they needed to see during that short, random time frame, they decided to bring me in for a comprehensive test where they could monitor me 24/7 for as long as necessary to find out the exact information they needed. I could not have been more pleased that my medical team chose this comprehensive approach. My confidence levels in them were already high, but have simply skyrocketed as I’ve watched how they’ve gone about their analysis of this first real issue.
I have to admit, I wasn’t thrilled to leave my comfy spot on the couch in front of the fireplace for a hospital room, but I decided to pretend to myself it was sort of a “hotel stay,” and an opportunity to “get away for a few days.” Given what I know now about the particular hospital unit I was in, I can say with certainty that was being overly optimistic.
The unit is used to monitor seizure. It was definitely full-service: they were going to do a continuous EEG, which meant audio and visual observation and recording of me and my brain the entire time I was at there. Remember that movie The Trueman Show? I was Trueman. There were nice ladies at the other end of the video camera watching my every move, and ready to call in the troops if I had a seizure of any kind. “Getting away for a few days” this was not.
The first thing they did was wire my head for sound:
This process was slightly reminiscent of getting a perm in the 1980s. (Shout out to Barbara Streisand, perm iconoclast of said decade). Actually, it was more like getting a hot glue gun treatment all over my head. Only the glue was cold, and then blow dried with cold air. Basically, they were gluing electrodes onto specific parts of my head so that they could see what specific parts of my brain were doing at all times.
When they finished, I looked like the borg.
Actually, I felt more like I was a character in M.T. Anderson’s marvelous book, Feed. Only it didn’t feel so marvelous. I was utterly connected. A human Internet. I’ll just say it: it was awful.
And you know what else I noticed, albeit later? Being hooked up this way made me seem and feel sicker than I really was:
Look at that – don’t you just want to say “poor little sick girl” when someone looks that vulnerable? Well don’t. I wasn’t a poor little sick girl right then – but I was starting to let myself be brainwashed (ha, brainwashed) into thinking I was. I don’t blame myself, really. I was scared I was having seizures. I felt yucky. They were plugging my head in, for goodness sake. But looking back on it with the knowledge I have now, I realize that I’ll need to constantly remind myself on this journey to not let the outside details completely define the inner experience.
After my “perm,” they did a test on me complete with flashing lights. It totally reminded me of the the treatment used for the rehabilitation of criminals in the Star Trek episode “Dagger of the Mind.” (Full explanation: our daughter, Hannah, just went through a HUGE Star Trek infatuation in the last year, from which she is now only starting to emerge. As a family, we have now watched every episode of Star Trek ever made at least three times in one year. What parents will not do for their children!)
Anyway, after my wiring, I was taken up to my room and they plugged in my brain. And then they plugged in my heart to another monitor. And then they told me people would be watching and recording me at all times. And that I could not go to the bathroom by myself. They put an IV in. And took my history. And took some blood. Then they said I could “relax.”
Fortunately, the cavalry came. Sister Cecilia and Sister Glenna, two Benedictine nuns who have known me since I was in second grade, if not before, came for a visit. They had driven down from their monastery in Northern Virginia – the one I am affiliated with as an oblate. They are both wise, smart, deep women of faith and strength and I was honored that they wanted to come just “lay eyes on me.” We had a great visit. It was good to share my diagnosis narrative with people who had known me all of my spiritual life, and they agreed to be part of the “spiritual dream team” that I’ve been trying to put together in the last two weeks to help me as I embark on my unexpected journey.
Long story short, after they left, I was observed all night. I had to mark when I felt my yucky spells and jitters so that the neurologists could read and interpret my scans the next morning. I maybe had 4-5 “episodes” to mark. Everyone was very kind, but the setup was uncomfortable and I felt tethered – not great for my independent streak. I didn’t sleep much. I felt restless. I missed my family. It was pretty crappy.
I woke at 4:00 in the morning and my nice nurse, Anne Marie, let me talk her into setting me up in the day room, even though it was still night. They plugged me in and got me monitored and then I put down my yoga mat and did my morning routine of trying to unwind my tight muscles – something that has become a part-time job in the last half year, and something I now wonder if could be related to my brain tumor. I spent an hour at it, and it felt great – for both my muscles and my mind.
After some meditation and organic food (which I brought myself to the hospital so I could stay on my cancer-healing routine of foods – more on this in another post, I promise), I met with the resident in charge of me. She outlined the procedure for the day and said it was possible that they might try to induce me to have a seizure that day. This sounded like the most horrible thing in the world – having another seizure is the thing I’ve been worried about most in the last two weeks. I braced myself for a long, hard day.
And then everything changed. I met with the attending doctor – who was great – and after our meeting she decided to send me home! Best and most surprising news in the world! See how much happier and confident I looked when they told me I was getting the electrodes off:
Here’s why: my EEG scan was normal. I was not having seizures. The yucky feelings I was having were not brain events but probably just side-effects of the steroids I am on. The anti-seizure medications were working, and they were going to increase them a little to make doubly sure. They felt that I was good to go for surgery and that it was unlikely that I would have a seizure on the table, given the information they’d gathered and analyzed in the previous 24 hours.
I was – and am – thrilled! It was hard for me to know whether those yucky feelings I’ve been having were the onset of another seizure or just bad reflux. Now I know. I am not having seizures. I can relax and know the yuckies will almost assuredly pass without me having to take another ambulance ride to the hospital. My medical team can be as sure as possible that I am ready for a seizure-free surgery. And I can be home – the place I most want to be, with the people I most want to be with.
I want to thank my medical team for taking the harder, more detailed road in order to get the exact information that they – and I – needed. It has resulted in an analysis that has given me such reassurance and confidence. I feel so much more ready to go forward now, and I am starting to realize that how I feel about my situation will be a key component to me moving through it in a healthy, healing way.
Great thing to know.
Dear Fran…We are all holding you and your family in our thoughts, and sending healing images your way. We know you are a tremendously strong person, and that your resilience, faith, family, C-vile friends and writing will help you move through this ordeal. We send you our love, Kathleen, Peter and Danielle
Kathleen! Thank you so much! You are right, processing this through writing in the arms of my community – far and near – is what’s going to get me through this. Love to you three.
Fran, I don’t know you as I usually go to five o’clock Mass at HC but have heard of your diagnosis and am intrigued reading your blog. I, myself, was diagnosed with primary peritoneal cancer in December, have had surgery at UVA and currently undergoing chemo treatments. I so identify with your sense of openness and sharing as I too have the support, love, and care of others is needed during the long healing process. I also talk to the small cells that are left and pray that the drugs go directly to extinguishing what is left. If you go to the Couric Center for treatments we may ru. I to each other. With God we will find the daily strength and courage to move through any challenges that arise. Blessings and prayers to you. Sue
Sue – thank you for reaching out in the midst of your own journey. I appreciate your comments here, and it looks like I may indeed be over at the Couric Center for treatments after my surgery. I’ll need someone to give me the low down, so if you’re up for it I’m all ears 🙂
So glad the seizures are gone and that you’re home! Yay! Our thoughts are with you.
Love and prayers, Vicky (and family)
Yay!!! Thanks, Vic.
Oh, Fran, this is not how I thought we would catch up after our last long rendezvous at Camp Overlook sharing a bunk room. You were so sweet (kinda that you lied) and said my very unladylike snoring never bothered you. No sleep that weekend but found our spirits flying high on that mountaintop!
Now, back to the present. This whole thing stinks. I have learned 2 things from you today: 1) I know with your faith that as you look back on this “adventure” you will see that all good things come to those who wait on the Lord. 2) I haven’t read as many books as you have. So, before our next conversation, I will try to read something
intellectual…..
I do have some good healing stuff in the pantry for you (it’s legal). Came from our organic garden…..heirloom tomatoes canned in their own juice, and a special tomato salsa that is deeeeeelicious and good on just about
anything (maybe even sardines). So these jars will make it over the mountain soon to help you on your path
to wholeness. p.s. you even looked beautiful all wired up!
Geri! Your heirloom tomatoes and salsa sound amazing – I cannot wait. The lycopene (sp?) is supposed to be very anti-cancer, too. Perfect!
By the way, I am really a pseudo intellectual. I have tried hard to be an intellectual, and I would have liked to have been one, but it’s high time I just admit it: I used Cliff Notes. There – I promised I would be honest here! Apologies to all of my teachers and professors.
Kudos to the max for taking organic food to the hospital; I did the same, as we are in charge of our own bodies and must send that emphatic message! Unfortunately, the dictates of most hospitals result in dieticians who are not yet “on our wavelength,”, eh wot???
Amy – I am glad you said this. I have been planning to write about it. From my little bit of research into this so far, it appears that quite a number of good scientific studies have been done on the healing effects of specific foods on specific types of tumors – amazing things like reducing inflammation and actually inhibiting tumor growth. This is huge!
And yet – when I was in the hospital this past week, they wanted to feed me french toast and sausage – both highly inflammatory foods – which I refused. Instead, I brought my own, organic, cancer-healing foods and ate only those foods while I was an inpatient (thanks to friends who committed early on to helping provide me cancer healing foods, by the way – forever thank you).
I know our healthcare system in general is bloated, costly, and broken in many ways. Organic food is expensive, and feeding cancer patients a particular diet while they are in the hospital is cumbersome and requires organization to make happen. But if the research is there, why aren’t the researching hospitals actually putting it into action for their patients? Why do the research at all, if it isn’t going to be used in practice?
Doctors have been slow to accept, much less recommend to patients, that food can be – and should be – used as medicine to heal our bodies. I now firmly believe that it can. In trying to help myself after my diagnosis I immediately stumbled upon an article in Prevention Magazine listing exactly what foods that I as a person with cancer need to be eating – foods that actual research shows to be effective in both preventing and healing cancer. I have lost weight in the past two weeks since my diagnosis, but not because of my illness – because my body is getting healthier with the new foods I am putting in it each and every time I eat. As a result, my body will be able to handle my surgery better, will have a healthier immune system, and will already be working to flush out unhealthy things and reduce inflammation so I can heal from cancer more effectively. This is not only essential to my physical wellbeing – it is also personally empowering to me.
I thank God I discovered Anti-Cancer: A New Way of Life by David Servan-Schreiber, MD, PhD the day after my diagnosis. It has given me a scientifically-based path that allows me as a cancer patient to directly contribute to the success of my own cancer treatment – every single time I open my mouth to eat. Now hospitals need to get on board and ONLY feed their cancer patients according to the latest research anytime they are admitted to the hospital. Me having to bring my own food to the hospital in order to avoid foods that are actually BAD for my body’s ability to heal from cancer is a silly predicament for a patient to be in – but you can be assured I will be doing it all during my treatment and recovery because it increases my chances of healing – on many levels.
I was glad to read about your hospital stay. Thanks for sharing and for your blog so I can stay in touch with what is happening!
Thanks, Kate!
Thanks for the update Fran. I’m glad to hear the testing went well and you can go home for a while! Those prayers sound sort of like affirmations, things that are true, that we don’t quite buy into, yet. That’s OK, aren’t we all a work in progress?
Love, Cindy
Absolutely! There is much that will be transformed in me during this, I am certain of it. The possibility of being changed is scary, but hopeful and sort of thrilling in its own way. Who might I become? I guess I will find out bit by bit. It reminds me of Victor Frankl in Man’s Search for Meaning – life is questioning me. How will I answer?
Fran-
I am in awe……. while I sit in disbelief and shock at your recent diagnosis you have already researched, blogged, and reached out to all in a way that shows great intelligence, control, and honesty! I am lifting you all in prayer but am also feeling moved by your words. You may be doing more for others than you will ever know. Thank you for sharing and letting us help you. You do have the strength, the will, the faith, and the love to fight this battle every step of the way. God Bless-
Abbey Bauer
Thank you, Abbey, for saying this, and for more you didn’t say. All I can say is that I am being carried right now. There will be many more feelings to come, I am sure, but right now there is so much light and love and grace and kindness that it is truly hard to see anything else. It’s a gift from others, not something I can claim as coming from me – of that I am very certain. If there is a kind of lurking terror, it is the possibility that I am being called to something more than I can know or can understand (or certainly control). I am praying to be open and receptive and accepting of anything – but that is a very brave prayer, and it’s going to take everything I have to be able to utter it truthfully. I can to a certain extent, but not all the way. Yet.
Fran, you are so amazing. What a champ! I know your faith and spirituality are very important tools for you as you navigate this journey. Know that you continue to be in my thoughts and prayers daily. Sending my love. Pat Laurenz
Thanks, Pat. Without those tools, my experience of this would be a wholly different thing. I am grateful to have learned some of these tools from great spirits and great guides. The universe has a way of providing the exact things we never knew we would need.
So gad about the EEG results. I do know steroids can make you feel very jittery and wired. Praying for you and your family, lovey!!
Thanks, Ann. I can’t tell you how reassuring it is to know what I am feeling is exactly what you describe and not another seizure. I feel much more relaxed since I came home from the hospital with this info. Thanks for the prayers, and for the initial days and now weeks of spreading the word, asking for prayers. Being surrounded early on laid a great foundation for our family.
Thanks for the blow by blow, Fran. So glad you go to go home earlier than expected.
Much love!