with hope

after much time, i'm finally sending another update regarding my mom's condition. unfortunately, i'm not writing with the greatest news. this past wednesday we received some news we weren't expecting nor hoping for. in a recent test done, there were malignant cells found in my mom's cerebral spinal fluid. several ct scans have been done and there is no mass, only cells from what we can tell. here are some of the details:

the shunt
two weeks ago, after noticing a significant downturn in my mom's cognition and functioning, we saw a neuro-surgeon who discovered that she had hydrocephalus. essentially this means that her ventricles weren't draining cerebral spinal fluid properly. when cs fluid is always circulating and keeps the brain "floating". when it builds up and doesn't drain properly it causes pressure to build up in the brain, resulting in swelling. this is not uncommon after brain surgery and radiation. after discovering this news, which actually, we were glad to hear, because it gave us some possible explanation for the change in her function, the neuro-surgeon inserted a shunt. a shunt is basically a tube that acts as a drain through the ventricles. the hope was that this would relieve the pressure and relieve the symptoms.

our hope is that the recent downturn in my mom's functioning is due to the hydrocephalus, which is being relieved by the shunt, but the benefits may not have yet been realized. Sometimes the shunt does not relieve the symptoms. the alternative is that the cancer cells may be affecting the meninges, the lining of the brain, which can cause decline in function also. it's impossible to know which it is currently, and This can not be detected by scanning.

treatment options
we have a few treatment options but are waiting to see how the coming week unfolds. the choices are iv chemo, intrathecal (administering directly into the ventricles) chemo, clinical trials (although we haven't found any yet), doing nothing and letting things take their course, or alternative forms of medicine. none of these options preclude us from doing any others. unfortunately, it's not clear how much good chemo would do at this point. what is difficult for the doctors is that my mom's case is very rare. there are very few cases like hers and there is no documentation of treatment plans in medical journals to follow. so a lot of this is a guessing game. her oncologist, dr. ampuero, is talking with docs at md anderson and johns hopkins to see if they have any thoughts. i've been doing lots of research on many different kinds of alternative medicine and healers.

the ups
the past several days my mom has been doing MUCH better. she's up and about, she's much more present, and she's eating like a horse, perhaps due to my cooking :). and each day we've noticed a small positive change in her cognition on some level. and dr. ampuero reminded us - "hey, this is laura glicken we're talking about. she lived 12 years after metastatic advanced stage 3 ovarian cancer. this is no regular woman. she surprised us once and she can do it again."

all of this is heartbreaking for me. my mother is my lifeline and i can't imagine my world without her in it. although i know that everything the doctors are saying right now isn't great, i also know that my mom isn't a statistic. she's an amazing woman with an incredible life force and a light that surrounds her. here's what else i know. miracles happen. i don't know how or why or when they happen, but they do. we've all heard of them and some of us, perhaps, have witnessed them. they are sometimes spontaneous. they are sometimes created by the power of love and prayer. they are sometimes created by the power of healers that work on levels we don't really understand.

i know that my mom is a powerful, amazing woman. i know that prayer and positive thought can do incredible things for healing.

instead of asking you to join me in my prayer today, i'll just ask that you reach inside of your core. whether you pray or not, please focus your deepest positive healing energies towards my mom. surround her with healing light, love and positive energy.

my prayer is simple. may my mother be healed and may her journey towards healing be graceful and kind.

update to friends and family from laura

Dear friends and family-

I wanted you to hear from me, not just Bill and Sarah, about what's happening with me.

It is lovely to be home again.
I am not going to work yet, nor am I driving.
I'm here, smiling, walking, talking, watching movies-
I'm beginning to come back to some aspects of normal life (groceries, laundry, etc.).

I finished three weeks of radiation on February 1, leaving me with a bald head, burned skin and fatigue.
Now that that is over, my main task is healing the trauma and injury to my brain (which Bill calls the "collateral damage" of the tumor, the surgeries and the radiation).

I've been to a neuropsychologist, who is giving me suggestions for how to heal my brain.
He and the other doctors tell me to expect it to take at least six months for the brain to heal--that I should wait through this process until I consider going back to work (even though I'd like to be back sooner).

I thank you all for your love and support, and your cards and calls.

I send you my love,
Laura


I'd be happy to hear from any of you if you wish.

laura's back in the real world

hello everyone - my mom was discharged from st. mary's rehab center on New Year's Eve day. it's been wonderful to have her (and us) out of the hospital. she and bill have been staying at andra and bill's again, in berkeley. we are so grateful how much they have opened their home to us during this time. in some ways, it's been just like regular times. movies. dinners. shopping. hanging out. and, of course, doctors. she's continued with occ. therapy and physical therapy. my mom's balance is so much better the physical therapist has said she doesn't need to continue with pt. more and more she is becoming her old self. each day we say more and more of laura.

we had another MRI done this week. it looked just like the MRI post surgery, which is great news. we also met with a radiation oncologist here. our plan is to set up a consultation at md anderson in houston (hopefully next week) before we make any decisions about treatment. we also have a consultation set up with a gyn oncologist here in san francisco for next wednesday. once we decide which way to go with radiation, my mom and bill will probably head home to begin treatment. hopefully this will happen by next weekend. my mom is so eager to be home and see her dog and smell the air and look at the sky and sleep in her bed. it's been a long time....

this new year's eve i spent a little differently than usual - i went to a yoga class, and spent the rest of the evening thinking about what i want for this year - for myself, and most importantly, for my mom.

so this prayer is a little different. and is directed towards her.....

mom, may this new year serve as a time to promote total healing for you
may this new year be a time where you let go of all that no longer serves you
may this new year be a life of renewed health
may this new year be a marker in your long continuing road of life
may this new year be a time of vitality, joy, and peace.
may you be free from pain and suffering
may your brain and body heal completely
may you be cancer free forever
may you be happy and free

and for us all... may this new year be a reminder that we should never take anything for granted in our lives
may this new year be a time that we are thankful for all of the blessings in our lives

laura's rehab update

hello everyone - it's been about a week since my last update. this will be a short one. my mother's physical and occupational therapy has been going really well. she's working unbelievably hard each day, tending to have 5 45-minute appointments - two phys. therapy, two occ. therapy and one speech therapy (not for speech, but for vision). all therapies are quite advanced at this point and are working on multi-tasking and complex cognitive issues. each day she is better and better. her short term memory is getting better. her balance is quite good, although she tends to get a bit wobbly when she's tired or distracted. everyone is so pleased with her progress, that she will be released tuesday morning from the hospital! we are thrilled at this news. we are so thankful for the amazing care we have received, but we are all getting very tired of hospitals.

the incision is healing unbelievably well (sutures were removed on monday) and the doctor did a fantastic job on the incision, itself. it will be completely covered by hair other than a 1/4 inch hairline right above her right ear. she is certainly blessed with the ability to heal well from surgeries, which i am thankful for.

as my mom's condition improves, she is getting more in touch with her emotions, which is great, but also hard, as she is starting to feel grief and fear surrounding this whole situation. i know that this is a positive sign of her improvement, but it's difficult, at times, to know that she is anxious, scared or sad and i cannot do anything to take it away or make it better. and, of course, it makes me sad, as well.

once out, she'll continue to do outpatient therapy here until she and bill return home to santa fe, probably the beginning of the second week of january once we've completed our doctor's appointments.

i just received a package from my uncle of various items of my dad's from the '60's and '70's. one of the first things i pulled out of the bag was a card written by him. it's not addressed to anyone, but i felt eerily like it was meant for us at this time. here's what it says:

happy new year filled with cheer
hope you go through this one with nothing to fear -
good health, happiness, and holiness you should hold near -
so sweet, sweet yom tov from your dear Tvi (that's me)

wednesday, jan. 2 is my mom's first post-op mri. the days following are meetings with various oncologists here in sf. many of you have written to us about the solstice, as well as the jewish prayer for healing. so i'll leave you with some thoughts about both....

as the days begin to get longer and the light overtakes the darkness, may the solstice be a sign of the light to come.
may this MRI be clear. may it be a sign of good things to come.
may our family's light begin to shine again as we overtake the darkness that has consumed us this past month.
may the light that begins to shine this season wash over my mom. may it be a blessing of good days to come. may it fill us with light, hope, complete healing.
and may the cancer be rid of her body so that we never, ever, ever, ever, ever have to go through this again.

Mi Sheberach is the prayer said to heal during the high holidays. this version is written by debbie friedman. The prayer takes its name from the first two words: “mi sheberach” meaning, literally, “the One who blessed.” It asks that the One who blessed our ancestors bring about a "Refuah Shlemah" - a complete healing, both physical and spiritual, for the person for whom the blessing is said.

Mi sheberach avoteinu mekor habrakha l’imoteinu
May the Source of strength
Who blessed the ones before us
Help us find the courage
To make our lives a blessing,
And let us say: Amen.
Mi sheberakh imoteinu mekor habrakha l’avoteinu
Bless those in need of healing With refuah shleima:
The renewal of body,
The renewal of spirit,
And let us say: Amen

the second phase of the san fran journey

hello all - sorry for the silence. i know some have been concerned. it's only been quiet because we've been very busy here in san francisco.

my mom was discharged from UCSF on wednesday. we made a decision, at the suggestion of the doctors and therapists there, to check her into an in-patient acute rehabilitation center. she'll be there for 1-2 weeks.

this rehab center is kind of like bootcamp for "crainies" (as the nurses lovingly call brain surgery patients) and stroke victims. it's going to be a lot of work for her, but it's a great environment for really challenging her mind and body. today i watched part of physical therapy. she was being asked to balance on this rocking board as she rocked it front and back. she looked a little like she was practicing to become a surfer. then she was asked to walk down the hall and count at this same time in numbers divisible by 3. all this multitasking is complex activities forcing her brain to work and getting her body back to being comfortable doing things it normally does without any thought. normally walking is an unconscious activity. for my mom, it's something she has to focus on right now so she stays balanced. the plan is to leave there much further along than we would have been if we were at home trying to do all this on our own. we want her to be safe and side-effect-free, as soon as possible!

her schedule goes something like this:

8am - breakfast with me and bill (brought from the outside, as i can't bare to have her eat hospital food)
9-9:45 - physical therapy
10:15-11 - occupational therapy
11-11:30 - cognitive/speech therapy
11:30-2:30 - break for lunch with us
2:30-3:15 physical therapy
3:45-4:30 occupational therapy
hang out in the late afternoon.

dinner is usually brought in by one of my wonderful friends. tonight we started to watch a movie together on my laptop, but she was so exhausted, we stopped it half way through and she went to bed.

the dilantin, which she was allergic to, is finally out of her system, so she's in much better spirits, has a surprising amount of energy, and is looking great. her head is healing nicely and the sutures will come out on monday. her balance gets better and better each day, as does her memory.

my parents will probably stay in the bay area through jan. 10 or so, as we have set up a few consults for the first week of january that will be very important in helping us to decide next steps. jan. 2 @ 7pm we will have a follow up mri. this will be very important for determining what kind of radiation course my mom will get. our hope is that the mri will still be clear. if this is the case, we'll probably wind up doing gamma knife radiation, which is a highly-targeted one day treatment. on jan. 4 we are meeting with dr. penny sneed, who is co-director of the ucsf gamma knife radiosurgery program. she comes highly recommended as a radiation oncologist and specializes in brain tumors. on jan. 8, the ucsf gyn oncology team will present my mom's case at their tumor board. "tumor board" is a meeting that is held each week in each specialty at ucsf. all the docs in that specialty get together and discuss some cases. it's a great opportunity to have my mom's case discussed with a large group of experts in their field. you may recall, we also had her case presented at the gamma knife tumor board in late november.
after the tumor board presentation, we'll be meeting with one of the gynecological oncologists at ucsf, dr. lee-may chen. interestingly, she's one of the directors of the cancer risk prevention group, which i am a part of, so i am already a patient of hers.

once we've met with these docs here and discussed all the options with my mom's oncologist, dr. ampuero, we'll make some treatment decisions. dr. ampuero is also consulting with a doctor he knows from md anderson, maurie markman. dr. ampuero thinks that dr. markman is the best gyn oncologist in the country.

i feel so blessed that i have been able to connect with as many top-rate doctors as i have here and that we continue to be able to get appointments set without too much difficulty. each day we continue to receive fantastic care for my mom and i am reminded at how lucky we are. there are so many families going through what we're going through without the skills, knowledge, and financial and emotional means. we were able to come to this wonderful place for treatment with minimal financial burden. bill and i can be my mom's "patient advocate" on a daily basis. we are educated and we speak english as a first language. i realized, once i finally looked at a calendar, that the anniversary of my father's death was the day of my mom's surgery here. i like to think that he is acting as her guardian angel on some level, watching out for us on this journey.

please help me to pray for my mom's continued recovery.

may laura's brain heal quickly and completely from the traumas it has sustained.
may her physical strength come back easily and without too much work.
may her cognition improve moment by moment as she moves quickly towards wholeness again.
may her emotional strength continue to guide her on this journey.
may these excellent doctors guide us well on our treatment path.
may treatment be as quick and painless as possible
may she sleep peacefully each night and dream of the many, many wonderful years ahead of her
may the oceans of prayers wash over her and clear her mind and body
may she be healed emotionally and physically
and may the cancer be rid of her body so that we never, ever, ever, ever, ever have to go through this again.

as always, we are so thankful for all your love, blessings, and support.

sarah and bill

ridin' the rollercoaster with laura part 2

Part 2:

I'm writing this on Sat. 12/15. [added more on Sunday and Monday]
General comment: One of the more difficult things to deal with all along since the first surgery has been L's short-term memory loss and extreme ADD-type thinking. She has passed a high percentage of the time sitting back, eyes closed, a kind of dreamy half smile on her face, aware of what she hears and able to nod appropriately, but somewhere waaaaay out in space, as though she hadn't slept in 48 hours or had just smoked 4 joints. She frequently emits little moans or grunts, which might mean ouch! or pleasure, or insight [aha] or complaint or all of the above or God only knows what; I sure can't tell. And later, when she is more present, she can't remember being in that state or what the sounds meant. At least then she is able to have some kind of conversation, but usually can't sustain it very long. This whole thing is frustrating, annoying, downright painful. I have been waking up in the middle of the night and remembering the fascinating, intelligent, articulate woman I have been living with for 31 years, missing her in the extreme, and in my worse moments, being afraid she won't come back.

The doctors have tested various possible causes and have narrowed them down to probable reaction to one of her drugs, dilantin. This is now gradually being replaced with a substitute, and indeed today has been the best yet in terms of alertness, energy, ability to express herself. This is wonderful to behold, but I can't help listening for the other shoe to drop. [Sunday she is even better, lots more energy, more relating, more initiating conversation.]

So, back to the story: When we last left our heroes on Thurs 12/6 in Santa Fe, they were sleeping tied together to prevent unauthorized wandering in the night. This plan worked fine, the only problem, for yours truly being that L would do her business on the toilet just fine, and then space out and just sit there; I would say, OK, honey, let's get up and go back to bed. She would nod and say OK, and then just sit there nodding and moaning, twice for a half hour[I actually timed it.] I tried everything: logic, pleading, begging, humoring, losing my temper, the silent treatment, nothing would get her to budge. I know this paints a humorous picture, but this was truly terrifying to me, I felt I was losing her forever. I broke down and wept. This also did not help. Finally I thought of turning the light on full bright. Then she got up and went back to bed.

The next few days you already know about, appts. with Dr. Ampuero, our truly beloved gyn-onc [see, i'm learning a lot of med-speak], Dr. Shina, a radiologist, our dear friend and neighbor Dr. Howard Gabor [at night when we were freaked out at Laura's spaced-out-ness, he reassured us it was normal for the situation]; much support, visits, food, prayers from our dear, great friend network; lots more ups, downs, middles;
CT, PET; an uneventful flight to SFO[ another fear had been that the pressure changes might make problems]. We were installed in Andra and Bill's home in Berkeley [Andra and Laura have been friends since Age 8, and Andra made the original connection between Laura and me], met Dr. Parsa on Thursday, had another MRI, and were admitted to UCSF Monday morning 12/10.

One thing that was especially moving and helpful to me was that my daughter Justine flew down from Portland to be with me, Sarah, and Laura for the surgery. She was a strong, sensible presence, as has Sarah, Laurie, and Andra throughout. During the surgery, Justine and I walked in the neighborhood, ate a meal, and were sitting outside a coffeehouse, about to return to the waiting room, when Sarah called and said Dr. Parsa had told her about the success of the surgery and that they had gotten it all out! I had been fairly confident all along that the risks were low, probability of success high, but yet I had been harboring a dread and a fear somewhere in my gut that the result might be otherwise, not particularly that she would die on the table, tho that could happen, but that there might be some kind of major deficit, that neither Laura nor I would ever be the same again. When the call came from Sarah, I experienced a gigantic wave of relief, of gratitude, of letting go of tension, such as I have never felt before. It must be like those huge waves I have been hearing about at Maverick, a surfing spot near here. I hugged Justine, wept a little, sat there taking in the reality, the enormity. I truly relaxed for the first time in two weeks. It was awesome!

Monday: I think I'll just send this out now, since my writing process is so slow, more later.
But a quick update: L was moved to a regular room on Friday, much more comfortable, no room mate with her TV, visitors, loud phone style. This morning L is about like yesterday, as reported above. We are hoping to find out more today about discharge, and how long we will have to stay in sfo. We will be staying at Sarah's house.

Love,
Bill

ridin' the rollercoaster with laura

What a ride this has been. Ecstacy to Agony to Terror to Pride to Anger to Relief and on and on.

Sunday: Eleven kilofeet of altitude on snow shoes at Wolf Creek Pass, 67-year-old Bill and his
younger-woman wife, best friend, guru all rolled up in one, truckin, without a care. later back at
the Inn, sweet love cocoon, fallin asleep in her arms, the room's a chaotic mess, but what the
hell, we'll pack it up in the morning.

Monday; waking up, still entwined, peaceful, and
allofasudden
Laura clamps her palm to her head; "God, the worst headache I have ever had! it won't stop!"
I immediately go to: STROKE! ANURISM! What will become of her? of me? Pure Terror.

Call the front desk: where's the hospital? We don't have one, but there are EMT's. Zoom to the
EMT's. Into an ambulance to Mercy Hospital in Durango. Cee Tee. It's a brain bleed. Cause
unknown. Into a chopper to Farmington. Em Are Eye. Possible tumor. TUMOR!?! Fuck! Who
thougt it would be a tumor? Meanwhile on Laura's left half, function deteriorating. more terror.
Emergency surgery: they cut a hole in the side of Laura's skull and remove clotted blood to
relieve the pressure and get a biopsy. When they wake her up her left side has returned. Relief.

Laurie drops everything and drives up from Santa Fe [by way of Pagosa Springs, an extra hour,
to pick up our stuff which the staff at the Inn has kindly packed up] and rolls in after midnight.
Unending Gratitude. Sarah flies in next day. Now we have a formidable army to fight the thing.
Bring 'em on! [Now that sounds familiar. where did I hear that?]

Tuesday: At 6:00 am, after I have slept 4 hours, the phone rings. it's Laura: where are you?
Where's my cell phone? Where's my toothbrush? I want my ring!! I'm baaack!

So. Laura has a brain tumor, likely an ovarian metastisis after 11 cancer-free years.
as weird as it sounds, this is actually good news. if it had been a stroke, we could have lost her
then and there. or gotten back someone else. It looks like this is the only place it is. Quite
operable. Suck out the poison and that's that. Maybe.

Everyone's great at the San Juan Regional Medical Center. Laura's a bit wobbly on her feet; CRS
squared, demanding, combative; alternately totally awake-aware-mentally sharp and then
zoned out, absent, unreachable, then back. Don't worry, we are told, it's the surgery, it's the
steroids, it's Mercury in retrograde. Won't last. ya know, as hard as I tried to find comfort in
that I couldn't. Anger. Frustration. impatience. I want my sweetie back!

Thursday we drive home, wondering what the hell we are going to do about Laura's combination
of wobbly gait and inability to remember to warn us when she is about to get up and lurch
somewhere. If she falls and hits her head wrong it could be life-threatening. How am I going to
be sure she doesn't get out of bed to pee without waking me Up.? She can't be trusted to
remember.
Solution: I tie a thin rope around her wrist and around mine. Making concrete the bonds of
matrimony. It works.

Well, gee, this is getting pretty long and I haven't even gotten to the main event, Laura's surgery
at UCSF. I think I'll just send this out as is and finish the windy part later. For now I'll just say
what you probably already know: The Surgery was declared an A+ success by Dr. parsa; He got
it all out! The relief that flooded over me is indescribable, but I'll try later anyway.
True to form, Laura called Sarah at 6am the morning after the surgery: where are you, when are
you coming, where's my this and that? She was lively all day Tuesday til she got tired, then she
started picking at her incisions and drains, I got pissed and hadda get out of there. More soon.

Please know that all the messages, emails, phone calls, prayers etc. have meant a great deal to
all of us.

Love,

Bill