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
Monday, December 31, 2007
Friday, December 21, 2007
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
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
Saturday, December 15, 2007
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
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
Wednesday, December 12, 2007
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
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
post-op update
i all - it's been a busy week here since i last updated everyone.
i am a big fan of sleep and there are few times in life that i appreciate being woken up early in the morning unnecessarily. there are, however, exceptions to this rule. the 6am call i received from my mother yesterday morning, only 14 hours after major brain surgery, was the best wake up call i could ever ask for. the reason for her call - just to know where i was, how i was, and what she wanted for breakfast - "good whole grain toast with yogurt, and english breakfast tea." of course, i brought over exactly what she wanted and she ate a very sizable breakfast.
she was awake and communicative for most of the day yesterday, although she slept on and off. she's still having problems with her short term memory. we must have told her 100 times that she can't scratch her incision, even though it itches.
yesterday afternoon bill and i met with dr. parsa to discuss the surgery and ask him a million questions. here's a summary of what he said:
the surgery was an A+! he felt it was very successful and he feels confident that he removed the entire tumor, that was radio-graphically visible.
the surgery was done looking into a microscope. he had a large photo of the MRI taken of my mom's brain on sunday up in front of him. the MRI is what guided him in the surgery. they essentially map her brain to the MRI, so when they point to a place in the brain, they can see it on the MRI. the incision was a T-shape above her right ear. he was able to make part of the incision in the same place the cut last week was. he removed a large mass, which included a huge amount of blood clot, mixed with tumor. he replaced the metal plate that had been put in two weeks ago with a titanium mesh plate. titanium is very lightweight, will not corrode, and is paramagnetic (meaning that is has a very weak attraction to magnets). this means that she won't set off the security systems in airports, etc.
he put two drains in her head to drain out excess fluid and blood. they both were removed this morning, which is another great sign. dr. parsa saw my mom yesterday at 6:30am and said he thought she was doing extremely well for someone who had just gone through major brain surgery.
he thinks that my mom should have no sustained deficits whatsoever from the surgery, which is fantastic. it is normal that she is unstable and that her short term memory is not great. he thinks the memory issue should resolve itself within days. depending on her stability, she'll likely need some physical therapy while in the hospital.
we were moved out of ICU into a "neuro step-down" unit last night. unfortunately, the step-down unit has no private rooms, so we're sharing a room. she is still on steroids and anti-seizure medicine, both as precautions. she's also taking several vitamins and tylenol. she hasn't had any pain medicine since yesterday at 6am. she's not complaining of headaches or pain.
i've spent the day here with her. we walked up and down the hallway a couple of times, but mostly she's been sleeping. her sodium is low, which is quite normal. this can frequently cause drowsiness, not to mention the drowsiness caused by the surgery itself. she also has a pretty high fever, which is nothing to be seriously alarmed by, but they need to watch it and make sure she doesn't have an infection. they've done a chest x-ray tonight and a blood culture. hopefully we'll be moved to a regular room tomorrow morning, so she'll have some quiet and some privacy.
we did a post-op MRI last night, which is standard after brain surgery. we just got the results of the MRI. ALL CLEAR! dr. parsa just came by and said it looked "awesome". he also said that some level of fever is normal and her white blood cell count looks good so he's not overly concerned about an infection. the main things he said to keep remembering is that she looks great and her scan looked great and he really thinks she'll have a full recovery.
we don't know when she'll be out of the hospital yet, or what kind of radiation we'll be doing, likely some sort of focalized radiation and potentially chemo.
my mom continues to move through this process with a grace and dignity which are amazing. we should all take some pointers from her ability to embrace her situation, look at it straight on, and decide to move through it.
i seem to vacillate between relief as we get each new bit of positive news and total terror as we wait for more news to come with potentially scary outcomes. i am doing my best to be patient and to trust the process, although patience is definitely not one of my strong suits.
so as we embark on this recovery process, i continue to pray and ask for ease.....
may this healing and recovery be complete and easy
may she continue to gain strength daily as her brain heals fully and her fever disappears
may the radiation medicine wash through her brain like a river, clearing any bad cells and not affecting ANY good ones
may she be healed emotionally and physically
and may the cancer be rid of her body forever so that we never, ever, ever, ever, ever have to go through this again.
i am a big fan of sleep and there are few times in life that i appreciate being woken up early in the morning unnecessarily. there are, however, exceptions to this rule. the 6am call i received from my mother yesterday morning, only 14 hours after major brain surgery, was the best wake up call i could ever ask for. the reason for her call - just to know where i was, how i was, and what she wanted for breakfast - "good whole grain toast with yogurt, and english breakfast tea." of course, i brought over exactly what she wanted and she ate a very sizable breakfast.
she was awake and communicative for most of the day yesterday, although she slept on and off. she's still having problems with her short term memory. we must have told her 100 times that she can't scratch her incision, even though it itches.
yesterday afternoon bill and i met with dr. parsa to discuss the surgery and ask him a million questions. here's a summary of what he said:
the surgery was an A+! he felt it was very successful and he feels confident that he removed the entire tumor, that was radio-graphically visible.
the surgery was done looking into a microscope. he had a large photo of the MRI taken of my mom's brain on sunday up in front of him. the MRI is what guided him in the surgery. they essentially map her brain to the MRI, so when they point to a place in the brain, they can see it on the MRI. the incision was a T-shape above her right ear. he was able to make part of the incision in the same place the cut last week was. he removed a large mass, which included a huge amount of blood clot, mixed with tumor. he replaced the metal plate that had been put in two weeks ago with a titanium mesh plate. titanium is very lightweight, will not corrode, and is paramagnetic (meaning that is has a very weak attraction to magnets). this means that she won't set off the security systems in airports, etc.
he put two drains in her head to drain out excess fluid and blood. they both were removed this morning, which is another great sign. dr. parsa saw my mom yesterday at 6:30am and said he thought she was doing extremely well for someone who had just gone through major brain surgery.
he thinks that my mom should have no sustained deficits whatsoever from the surgery, which is fantastic. it is normal that she is unstable and that her short term memory is not great. he thinks the memory issue should resolve itself within days. depending on her stability, she'll likely need some physical therapy while in the hospital.
we were moved out of ICU into a "neuro step-down" unit last night. unfortunately, the step-down unit has no private rooms, so we're sharing a room. she is still on steroids and anti-seizure medicine, both as precautions. she's also taking several vitamins and tylenol. she hasn't had any pain medicine since yesterday at 6am. she's not complaining of headaches or pain.
i've spent the day here with her. we walked up and down the hallway a couple of times, but mostly she's been sleeping. her sodium is low, which is quite normal. this can frequently cause drowsiness, not to mention the drowsiness caused by the surgery itself. she also has a pretty high fever, which is nothing to be seriously alarmed by, but they need to watch it and make sure she doesn't have an infection. they've done a chest x-ray tonight and a blood culture. hopefully we'll be moved to a regular room tomorrow morning, so she'll have some quiet and some privacy.
we did a post-op MRI last night, which is standard after brain surgery. we just got the results of the MRI. ALL CLEAR! dr. parsa just came by and said it looked "awesome". he also said that some level of fever is normal and her white blood cell count looks good so he's not overly concerned about an infection. the main things he said to keep remembering is that she looks great and her scan looked great and he really thinks she'll have a full recovery.
we don't know when she'll be out of the hospital yet, or what kind of radiation we'll be doing, likely some sort of focalized radiation and potentially chemo.
my mom continues to move through this process with a grace and dignity which are amazing. we should all take some pointers from her ability to embrace her situation, look at it straight on, and decide to move through it.
i seem to vacillate between relief as we get each new bit of positive news and total terror as we wait for more news to come with potentially scary outcomes. i am doing my best to be patient and to trust the process, although patience is definitely not one of my strong suits.
so as we embark on this recovery process, i continue to pray and ask for ease.....
may this healing and recovery be complete and easy
may she continue to gain strength daily as her brain heals fully and her fever disappears
may the radiation medicine wash through her brain like a river, clearing any bad cells and not affecting ANY good ones
may she be healed emotionally and physically
and may the cancer be rid of her body forever so that we never, ever, ever, ever, ever have to go through this again.
Monday, December 10, 2007
surgery went well
just a very quick update. more later.
my mom's surgery went very well. according to the doc, he was able to remove the entire tumor - everything that is "radiographically visible". there will still be follow up treatment, but we don't know what yet.
unfortunately, she's still waiting for a bed in ICU. she's in recovery and they won't let us see her until she is in ICU, which could be a couple more hours. we did hear from the nurse in recovery that she's talking and moving around, although confused (normal for surgery.)
once we've seen her and know more, we'll let everyone know. the next 24 hours is crucial to make sure she's comfortable, no infections, no swelling, etc. so keep her in your thoughts and prayers.
thanks for all the light and love.
my mom's surgery went very well. according to the doc, he was able to remove the entire tumor - everything that is "radiographically visible". there will still be follow up treatment, but we don't know what yet.
unfortunately, she's still waiting for a bed in ICU. she's in recovery and they won't let us see her until she is in ICU, which could be a couple more hours. we did hear from the nurse in recovery that she's talking and moving around, although confused (normal for surgery.)
once we've seen her and know more, we'll let everyone know. the next 24 hours is crucial to make sure she's comfortable, no infections, no swelling, etc. so keep her in your thoughts and prayers.
thanks for all the light and love.
Friday, December 7, 2007
getting ready for surgery in san francisco
it's friday morning. i'm sitting having coffee in my living room. it's nice to be home.
it's been a busy week, getting ready for the trip out here, meeting with the radiation oncologist, and meeting yesterday with docs here at UCSF.
the radiation oncologist in santa fe was great. he gave my mom an exam and spent a lot of time with us talking about options, etc. the truth is, all the possibilities are only just that until we really know what the tumor is like, how much dr. parsa gets out, etc.
wednesday
we flew out to san francisco. bill and i were pretty worried about how she might do on the plane with the change in pressure. she did great! no headaches. she and i sat and did the NYT crossword puzzle together. of course, she's much faster at it than I, but I managed to get a few words in there too. it was a beautiful clear day when we left and we were able to see the grand canyon very clearly out the window. it reminded me of when my mom and bill took a two week rafting trip down the grand a few years ago. it's a highlight in their travels, i believe.
once we landed we got my mom and bill all settled into andra's cozy house in berkeley and had a wonderful dinner together. andra and my mom have known each other since they were 10. my mom's maiden name is adelstein. andra made up a nickname for her when they were little "laura monda tonda addle diddle doodle noodle". today andra still calls her "mond" for short. i'm so thankful they are staying with andra and her husband bill. they are like family to me, and also to my mom. and it feels so good knowing that she is in such a nurturing comfortable place.
friday we met with dr. parsa, the surgeon and went to the pre-op "prepare clinic". the prepare clinic is where you go before surgery to get tests done, talk about anesthesia, etc., to make sure you are a candidate for surgery based on your overall health. of course, she passed with flying colors. dr. parsa is a wonderful man. we all got such a great feeling for him. not only is he a great surgeon, but he's also very human, caring and available. he understands what we're going through on a human level and can separate himself from the surgical side to listen to our questions, concerns, etc. basically we have no new news. he gave us the lowdown of how the surgery will go. he had to tell us all the scary possibilities of what "can" happen during surgery, but we all know those and he only told us because he's legally bound to do so. in general he says there is a less than 1% chance of a stroke, and very, very minimal chances of anything else. he gave us 3 scenarios for how the recovery might go. scenario 1, which is where we are hoping to be, the surgery is an A+. everything goes great. she's in ICU overnight, then moved to a regular room on tuesday where she'll be for another 2-3 days. scenario 2: surgery isn't quite as smooth. she's not responding quite as quickly, needs to stay in ICU for 48 hours, then moved to a regular room. scenario 3 is lots of complications, blah blah blah. i won't even go there, because none of us believe it's a likelihood.
so, here's hoping for A+.
everyone we met at UCSF has been wonderful and kind, from the technician who drew blood, to the nurse practitioner, to the surgeon, himself. we all feel really good about the decision we made to be here for this surgery.
we now have a couple of days off to spend time together and hopefully have a little fun.
sunday we'll go back to the hospital for a "stealth MRI". this is the MRI done right before surgery where they put little lifesaver looking stickers as markers on my mom's head to help guide the surgeon.
monday is D-day, or S-day as the case may be. we'll check in at 9 am. the surgery is scheduled for 11am. generally only one person is allowed to go up to the preop waiting area with a patient, but the nurse practioner was able to find one of the women who work in the surgical waiting area who assured us that both bill and i can be with her until they take her into the o.r. as i mentioned in my last email, the surgery will last 3-5 hours. they encourage us to leave the hospital. one of the nurses will call our cell phone every hour to give us updates on how everything is going. once dr. parsa is done, we'll receive a call to come back to speak with him. at that point my mom will either be brought to recovery or straight to an ICU bed. hopefully they'll have a bed for her in ICU right away. that way we'll be able to see her sooner. no family is allowed in the recovery room, which would mean we'd have to wait longer. once we speak with dr. parsa, we'll really know much more about next steps. until then we will take each day as it comes. i will do my best to stay in the present moment, enjoy my time with my mom, do something nice with her each day and find something to be grateful for along the way.
we will be calling a few people when she is out of surgery who will then spread the news. as soon as i am able, i'll send another update after the surgery.
my mom continues to do great. her spirits are high and she's being such a trooper. she's not complaining at all about all the poking and prodding and needles, etc. she truly is a remarkable woman with incredible strength.
so, please continue to keep her in your prayers. say some extra special prayers on monday around mid-day pacific time.
my prayer for today.
universe - please continue to keep my mom in your light.
please hold her in safety during the surgery.
please hold her in compassion and love
please wrap her in the cocoon of love, prayers, and support that so many around the world have offered.
may this surgery be effortless and smooth.
may dr. parsa remove every last bit of the tumor he possibly can
may my mom feel no pain and experience no hardship during this time
may she be held in all of our arms as she is cared for by dr. parsa.
may she wake up easily from anesthesia with no deficits whatsoever
may tuesday, dec. 11, 2007, be a new beginning for laura. a new day of being cancer free. a new day of being healthy and vital. a new day of walking with no imbalance. a new day with no short term memory loss. a new day to embrace the love and friendship of so many around her.
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.
it's been a busy week, getting ready for the trip out here, meeting with the radiation oncologist, and meeting yesterday with docs here at UCSF.
the radiation oncologist in santa fe was great. he gave my mom an exam and spent a lot of time with us talking about options, etc. the truth is, all the possibilities are only just that until we really know what the tumor is like, how much dr. parsa gets out, etc.
wednesday
we flew out to san francisco. bill and i were pretty worried about how she might do on the plane with the change in pressure. she did great! no headaches. she and i sat and did the NYT crossword puzzle together. of course, she's much faster at it than I, but I managed to get a few words in there too. it was a beautiful clear day when we left and we were able to see the grand canyon very clearly out the window. it reminded me of when my mom and bill took a two week rafting trip down the grand a few years ago. it's a highlight in their travels, i believe.
once we landed we got my mom and bill all settled into andra's cozy house in berkeley and had a wonderful dinner together. andra and my mom have known each other since they were 10. my mom's maiden name is adelstein. andra made up a nickname for her when they were little "laura monda tonda addle diddle doodle noodle". today andra still calls her "mond" for short. i'm so thankful they are staying with andra and her husband bill. they are like family to me, and also to my mom. and it feels so good knowing that she is in such a nurturing comfortable place.
friday we met with dr. parsa, the surgeon and went to the pre-op "prepare clinic". the prepare clinic is where you go before surgery to get tests done, talk about anesthesia, etc., to make sure you are a candidate for surgery based on your overall health. of course, she passed with flying colors. dr. parsa is a wonderful man. we all got such a great feeling for him. not only is he a great surgeon, but he's also very human, caring and available. he understands what we're going through on a human level and can separate himself from the surgical side to listen to our questions, concerns, etc. basically we have no new news. he gave us the lowdown of how the surgery will go. he had to tell us all the scary possibilities of what "can" happen during surgery, but we all know those and he only told us because he's legally bound to do so. in general he says there is a less than 1% chance of a stroke, and very, very minimal chances of anything else. he gave us 3 scenarios for how the recovery might go. scenario 1, which is where we are hoping to be, the surgery is an A+. everything goes great. she's in ICU overnight, then moved to a regular room on tuesday where she'll be for another 2-3 days. scenario 2: surgery isn't quite as smooth. she's not responding quite as quickly, needs to stay in ICU for 48 hours, then moved to a regular room. scenario 3 is lots of complications, blah blah blah. i won't even go there, because none of us believe it's a likelihood.
so, here's hoping for A+.
everyone we met at UCSF has been wonderful and kind, from the technician who drew blood, to the nurse practitioner, to the surgeon, himself. we all feel really good about the decision we made to be here for this surgery.
we now have a couple of days off to spend time together and hopefully have a little fun.
sunday we'll go back to the hospital for a "stealth MRI". this is the MRI done right before surgery where they put little lifesaver looking stickers as markers on my mom's head to help guide the surgeon.
monday is D-day, or S-day as the case may be. we'll check in at 9 am. the surgery is scheduled for 11am. generally only one person is allowed to go up to the preop waiting area with a patient, but the nurse practioner was able to find one of the women who work in the surgical waiting area who assured us that both bill and i can be with her until they take her into the o.r. as i mentioned in my last email, the surgery will last 3-5 hours. they encourage us to leave the hospital. one of the nurses will call our cell phone every hour to give us updates on how everything is going. once dr. parsa is done, we'll receive a call to come back to speak with him. at that point my mom will either be brought to recovery or straight to an ICU bed. hopefully they'll have a bed for her in ICU right away. that way we'll be able to see her sooner. no family is allowed in the recovery room, which would mean we'd have to wait longer. once we speak with dr. parsa, we'll really know much more about next steps. until then we will take each day as it comes. i will do my best to stay in the present moment, enjoy my time with my mom, do something nice with her each day and find something to be grateful for along the way.
we will be calling a few people when she is out of surgery who will then spread the news. as soon as i am able, i'll send another update after the surgery.
my mom continues to do great. her spirits are high and she's being such a trooper. she's not complaining at all about all the poking and prodding and needles, etc. she truly is a remarkable woman with incredible strength.
so, please continue to keep her in your prayers. say some extra special prayers on monday around mid-day pacific time.
my prayer for today.
universe - please continue to keep my mom in your light.
please hold her in safety during the surgery.
please hold her in compassion and love
please wrap her in the cocoon of love, prayers, and support that so many around the world have offered.
may this surgery be effortless and smooth.
may dr. parsa remove every last bit of the tumor he possibly can
may my mom feel no pain and experience no hardship during this time
may she be held in all of our arms as she is cared for by dr. parsa.
may she wake up easily from anesthesia with no deficits whatsoever
may tuesday, dec. 11, 2007, be a new beginning for laura. a new day of being cancer free. a new day of being healthy and vital. a new day of walking with no imbalance. a new day with no short term memory loss. a new day to embrace the love and friendship of so many around her.
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.
Monday, December 3, 2007
It's nowhere else!
the PET scan was negative! no cancer anywhere else in the body. this is fantastic news and yet another miracle on this journey we are taking. one step closer to recovery. thank you all for your continued prayers.
Saturday, December 1, 2007
we're home and have a plan
we drove back from farmington on thursday afternoon. my mom did a great job driving considering she had just had brain surgery a few days earlier. i kept telling her to slow down but she wouldn't have it...... just kidding. bill and i thought the visual was kind of funny, she does look a little like those crash test dummies, and we could use some levity every now and then. no driving for her until after treatment.
it's amazing how easily we forget about the small everyday joys in our lives. coming back home after being in the hospital was so comforting for all of us. eating food from the refrigerator (which i have to force myself to do. my mother, on the other hand, is eating like a horse, as always), sitting on the couch together, playing with the dogs, smelling the crisp mountain air.
my mom continues to do well. today is the first day she's let herself relax at all. she's been very tired and had a headache most of the day. it's literally the first day she's sat still since her surgery. before today she's been on the phone or in the kitchen cleaning up nonstop. her spirits continue to inspire me. i sat down with her and really tried to talk to her about her feelings and fears. here's what she said, with complete assuredness. "This wasn't supposed to happen. I just can't believe after this long that it could come back. I'm sad about it. I'm angry. I'm annoyed. But, I'm not afraid. I really don't think this is going to kill me. I'm not going to die from this. I don't know how I know it, I just do.. As my grandmother used to say, "from her mouth to god's ears". May it be so!
and now for all the details.
the doctor's appointments:
yesterday was a big day. we spoke to many docs.
gamma knife tumor board - first i heard back from one of the doctors who had presented my mom's case at the UCSF gamma knife tumor board that met thursday afternoon. their conclusion was that this was a tumor that needed to be surgically excised and gamma knife wouldn't work. there's good and bad in this. the bad is that gamma knife is very non-invasive and has high success in small tumors. the good is that through surgery they can gain much more information about the tumor itself by actually looking at it and the brain and can do pathology analysis on the tissue. for anyone who is interested, gamma knife is a device that aims gamma radiation through a target point in the patient's brain. The patient wears a specialized helmet that is surgically fixed to their skull so that the brain tumor remains stationary at target point of the gamma rays. A killing dose of radiation is thereby sent through the tumor in one treatment session, while all surrounding brain tissues receive less than a killing dose.
phone consult with UCSF neuro-surgeon Dr. Andrew Parsa - we then had a conference call with dr. parsa, one of the neurosurgeons from UCSF. I had fedexed him my mother's MRI, cat scans, and all the reports. Here's what he said: surgery is absolutely necessary and soon. She is fortunate because of where the tumor is (right temporal lobe), because it's easily accessible through surgery. He feels very confident that he can have a great success doing this surgery and can excise a great amount, if not all of the tumor. Another benefit of the tumor's location is that the risk of paralysis, infection, bleeding, and stroke is very (he emphasized this word) minor. There are always risks in doing surgery, but we're lucky the tumor isn't too deep or in a more intricate location in the brain. he believes the tumor is somewhere between 3 and 4 cm. in its greatest dimension. the most important question we had for dr. parsa was whether my mom can have a glass of wine in the evenings. He said "only one glass? how about 2 or 3?" he then told us he had moved things around in his schedule and had made time for us next monday, dec. 10 for the surgery.
Dr. Francisco Ampuero, my mom's GYN oncologist from 11 yrs ago and ever since - then we went to meet with dr. ampuero at the cancer center in santa fe. he spent close to two hours with us, answered every question we had. if there are angels on earth, this man is one. aside from being a fantastic first rate GYN oncologist and surgeon, he is, without a doubt, the most compassionate, caring, kind doctor i have ever met. so here's what dr. a said: he agrees completely with dr. parsa's suggestion of surgery, and agrees that it should be done with the best doctors possible. we went through the MRI with him onscreen and measured the tumor which he thought seemed to be about 3cm in size. he did a physical exam. the rest of my mom's body looks healthy and great.
our big question to him was "how did it get there after 11 years?" he doesn't have an absolute answer for this, because it's impossible to know. it is possible that an ovarian cancer can have a single site brain met. it is, however, very unusual. because of this, he wants us to do more tests. although we already did a full-body CT scan that was clear he wants us to get a PET scan, as well. apparently a CT scan is only 85% accurate. a PET scan is 95% accurate. a PET scan is a different kind of imaging scan. a short-lived radioactive tracer isotope is incorporated into a metabolically active molecule of sugar and injected into the blood stream. the sugar is only metabolized by "bad" cells, so that the image will show dark areas, except where there is cancer. those areas will be "lit" up. Our intention is to see only a lit up area in my mom's head where we know the cancer. May the rest of the body be in darkness for this photo only!
the treatment plan and timing
the surgery is scheduled for monday, dec. 10 @ 9am. we are flying to san francisco on wednesday afternoon. we'll have an in-office appointment with the surgeon on thursday, followed by a visit with anesthesia. on sunday she'll have another MRI. they will place some small markers on her head that will remain there for the surgery. we'll check into the hospital at 9am on monday. the surgery is apparently relatively "easy" or "routine" surgery for a high level neurosurgeon. it will last between 3-5 hours. she'll be in the hospital for 3-5 days, and recovery, which she can do in santa fe, will be 3-5 weeks. pretty straightforward. he will immobilize her head and go in the through the right side of her head. he will take a piece of the bone out so he can access the temporal lobe. he then pulls back the dura (which is the the tough outermost layer of the brain) and does his magic. He'll then replace the bone he removed and attach it with a screw and a plate. our hope is that the tumor will present on the smaller side of the range and that it will be completely excised. May this be so!
there will undoubtedly be a fair amount of pre-op before surgery. i'll let everyone know what time the surgery is so you can all say a little prayer and set an intention for a fantastic outcome.
i have to keep reminding myself of the little joys right now. like walking upstairs to my parents room yesterday and seeing my mom cradled in bill's arms with the dog next to them in the bed. they all had looks of such joy on their faces. you don't get much better than that. and i mustn't forget the little blessings we receive each day in the news we receive and the care we are getting, as well as the amazing outpouring of love and support and prayers from y'all. we received fantastic care in farmington and have been able to get on the schedule for some very fine doctors. i am doing what i can to stay strong. i have moments of feeling completely and utterly devastated, but underneath that i find my strength, again, and remember our purpose here - to rid my mother of this cancer once and for all. and i am resolute and unwavering in this goal.
my next update will likely be after the surgery. i'm sure everyone will be eager to know how things go. feel free to call my cell phone 415.609.5355. if we aren't available, we'll turn the phone off. i'll set up a phone tree for my mom's friends in santa fe so everyone gets the news.
please continue to keep my mother in your hearts, minds, and light.
my prayer for today
may this tumor continue to shrink and disappear.
may the PET scan be clear
may the surgery go perfectly. may the doctor's fine hands remove the tumor in it's entirety
may my mother's recovery be smooth and fast.
may the waters of health and vitality wash over my mother's brain and body so that she is, again, free and clear of cancer forever
I'll leave you all with something that one of my mother's dear friends, dick moskowitz, wrote to me in an email yesterday that pretty much sums it all up....
We can all take comfort in the fact that you alluded to: your mom is endowed with a rare gift, a life force that is capable of taking up whatever comes her way and by some inner magic turning it into an occasion for self-healing.
it's amazing how easily we forget about the small everyday joys in our lives. coming back home after being in the hospital was so comforting for all of us. eating food from the refrigerator (which i have to force myself to do. my mother, on the other hand, is eating like a horse, as always), sitting on the couch together, playing with the dogs, smelling the crisp mountain air.
my mom continues to do well. today is the first day she's let herself relax at all. she's been very tired and had a headache most of the day. it's literally the first day she's sat still since her surgery. before today she's been on the phone or in the kitchen cleaning up nonstop. her spirits continue to inspire me. i sat down with her and really tried to talk to her about her feelings and fears. here's what she said, with complete assuredness. "This wasn't supposed to happen. I just can't believe after this long that it could come back. I'm sad about it. I'm angry. I'm annoyed. But, I'm not afraid. I really don't think this is going to kill me. I'm not going to die from this. I don't know how I know it, I just do.. As my grandmother used to say, "from her mouth to god's ears". May it be so!
and now for all the details.
the doctor's appointments:
yesterday was a big day. we spoke to many docs.
gamma knife tumor board - first i heard back from one of the doctors who had presented my mom's case at the UCSF gamma knife tumor board that met thursday afternoon. their conclusion was that this was a tumor that needed to be surgically excised and gamma knife wouldn't work. there's good and bad in this. the bad is that gamma knife is very non-invasive and has high success in small tumors. the good is that through surgery they can gain much more information about the tumor itself by actually looking at it and the brain and can do pathology analysis on the tissue. for anyone who is interested, gamma knife is a device that aims gamma radiation through a target point in the patient's brain. The patient wears a specialized helmet that is surgically fixed to their skull so that the brain tumor remains stationary at target point of the gamma rays. A killing dose of radiation is thereby sent through the tumor in one treatment session, while all surrounding brain tissues receive less than a killing dose.
phone consult with UCSF neuro-surgeon Dr. Andrew Parsa - we then had a conference call with dr. parsa, one of the neurosurgeons from UCSF. I had fedexed him my mother's MRI, cat scans, and all the reports. Here's what he said: surgery is absolutely necessary and soon. She is fortunate because of where the tumor is (right temporal lobe), because it's easily accessible through surgery. He feels very confident that he can have a great success doing this surgery and can excise a great amount, if not all of the tumor. Another benefit of the tumor's location is that the risk of paralysis, infection, bleeding, and stroke is very (he emphasized this word) minor. There are always risks in doing surgery, but we're lucky the tumor isn't too deep or in a more intricate location in the brain. he believes the tumor is somewhere between 3 and 4 cm. in its greatest dimension. the most important question we had for dr. parsa was whether my mom can have a glass of wine in the evenings. He said "only one glass? how about 2 or 3?" he then told us he had moved things around in his schedule and had made time for us next monday, dec. 10 for the surgery.
Dr. Francisco Ampuero, my mom's GYN oncologist from 11 yrs ago and ever since - then we went to meet with dr. ampuero at the cancer center in santa fe. he spent close to two hours with us, answered every question we had. if there are angels on earth, this man is one. aside from being a fantastic first rate GYN oncologist and surgeon, he is, without a doubt, the most compassionate, caring, kind doctor i have ever met. so here's what dr. a said: he agrees completely with dr. parsa's suggestion of surgery, and agrees that it should be done with the best doctors possible. we went through the MRI with him onscreen and measured the tumor which he thought seemed to be about 3cm in size. he did a physical exam. the rest of my mom's body looks healthy and great.
our big question to him was "how did it get there after 11 years?" he doesn't have an absolute answer for this, because it's impossible to know. it is possible that an ovarian cancer can have a single site brain met. it is, however, very unusual. because of this, he wants us to do more tests. although we already did a full-body CT scan that was clear he wants us to get a PET scan, as well. apparently a CT scan is only 85% accurate. a PET scan is 95% accurate. a PET scan is a different kind of imaging scan. a short-lived radioactive tracer isotope is incorporated into a metabolically active molecule of sugar and injected into the blood stream. the sugar is only metabolized by "bad" cells, so that the image will show dark areas, except where there is cancer. those areas will be "lit" up. Our intention is to see only a lit up area in my mom's head where we know the cancer. May the rest of the body be in darkness for this photo only!
the treatment plan and timing
the surgery is scheduled for monday, dec. 10 @ 9am. we are flying to san francisco on wednesday afternoon. we'll have an in-office appointment with the surgeon on thursday, followed by a visit with anesthesia. on sunday she'll have another MRI. they will place some small markers on her head that will remain there for the surgery. we'll check into the hospital at 9am on monday. the surgery is apparently relatively "easy" or "routine" surgery for a high level neurosurgeon. it will last between 3-5 hours. she'll be in the hospital for 3-5 days, and recovery, which she can do in santa fe, will be 3-5 weeks. pretty straightforward. he will immobilize her head and go in the through the right side of her head. he will take a piece of the bone out so he can access the temporal lobe. he then pulls back the dura (which is the the tough outermost layer of the brain) and does his magic. He'll then replace the bone he removed and attach it with a screw and a plate. our hope is that the tumor will present on the smaller side of the range and that it will be completely excised. May this be so!
there will undoubtedly be a fair amount of pre-op before surgery. i'll let everyone know what time the surgery is so you can all say a little prayer and set an intention for a fantastic outcome.
i have to keep reminding myself of the little joys right now. like walking upstairs to my parents room yesterday and seeing my mom cradled in bill's arms with the dog next to them in the bed. they all had looks of such joy on their faces. you don't get much better than that. and i mustn't forget the little blessings we receive each day in the news we receive and the care we are getting, as well as the amazing outpouring of love and support and prayers from y'all. we received fantastic care in farmington and have been able to get on the schedule for some very fine doctors. i am doing what i can to stay strong. i have moments of feeling completely and utterly devastated, but underneath that i find my strength, again, and remember our purpose here - to rid my mother of this cancer once and for all. and i am resolute and unwavering in this goal.
my next update will likely be after the surgery. i'm sure everyone will be eager to know how things go. feel free to call my cell phone 415.609.5355. if we aren't available, we'll turn the phone off. i'll set up a phone tree for my mom's friends in santa fe so everyone gets the news.
please continue to keep my mother in your hearts, minds, and light.
my prayer for today
may this tumor continue to shrink and disappear.
may the PET scan be clear
may the surgery go perfectly. may the doctor's fine hands remove the tumor in it's entirety
may my mother's recovery be smooth and fast.
may the waters of health and vitality wash over my mother's brain and body so that she is, again, free and clear of cancer forever
I'll leave you all with something that one of my mother's dear friends, dick moskowitz, wrote to me in an email yesterday that pretty much sums it all up....
We can all take comfort in the fact that you alluded to: your mom is endowed with a rare gift, a life force that is capable of taking up whatever comes her way and by some inner magic turning it into an occasion for self-healing.
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