So, kind of a crappy end to the year (whoo-whoo, brain tumor!) but am determined 2010 will have plenty of good, happy, wonderfulness to provide some balance. The underlying diagnosis/prognosis is still the shits but if anyone has a chance to fight the good fight, it's me, with my underlying good health, a phenomenal support system in my unbelievable family (which includes two wicked-smart medical doctors who help keep my "official" medical team on track, financial resources, the best medical insurance money can buy, an unparalleled team of medical practitioners, and I live in a place where the medical treatments are the cutting edge with the best success rates out there. So. Could be a lot worse.
Kirk and I head down to Aptos this afternoon, where my sister & brother-in-law (Deborah and Whit) will be treating us to a weekend of caretaking that's like staying at a lovely bed-and-breakfast but one where we'll be the only guests and we can walk around in PJs and get into the refrigerator whenever we want to. And given my steroid-induced appetite, that means eating every 1-2 hours. Hulk hungry! (Seriously, when the steroid hunger hits...don't get between me and my calories, as I take no responsibility for any damage that occurs to you.)
My daughter, Dani, who now lives in Monterey, will be joining us for New Years Day, which makes me oh-so-happy, as you can imagine. I believe she'll be bringing her relatively new beau, Matt, which I'm very pleased about. She's found herself a good man which would be a good thing at any time, but makes me especially happy right now as this is a good time for her to have another person on her support team. Helps me to get through a tough time, knowing my girl's got someone helping her get through her tough time.
My brother and sister-in-law and family are in my home town, Palm Springs, for another few days, visiting the family "manse" and spending some time with my unbelievably wonderful Dad and his equally wonderful wife, Judy. I'm jealous. I miss them all and can't wait for some time with all of them. But it was great to talk to them last night and they head back right after new years, so I'll get some good quality time with them soon. (Well, hopefully, that will include Dad & Judy, if I can convince them to head north for a visit some time soon!)
Just want to say another quick thanks to all of you for all the love you're sending my way. Your posts frequently make me cry, but -- for those of you who don't wear your emotions on your sleeve like some of us do -- be assured that the crying feels good, it's how my body responds to the love I feel from you (well, helped along by the way-high steroid dose I'm on).
Here's to a happier, healthier 2010. Love you all.
/ab
Thursday, December 31, 2009
Monday, December 28, 2009
From Alison
Alison posted this in a comment on the Pixie Pix post, so I moved it to the main page:
Hi all. My first time trying to post on my own. We'll see how it goes.
Even though I figured I'd be posting cheerier stuff on my blog, I kind of needed to just say what was on my mind.
Rough day. My treatment plan has me going in for radiation five days/week and for lab draws weekly. This was one of my lab draw days and all I can say is I don't think I've ever been so scared in my life (and I've been scared a lot lately) when the results came back with critical potassium values that were terrifyingly high, to say the least. Thanks to Kirk for insisting we get the nurse practitioner to re-draw and re-run the lab or I'd be going through a nasty treatment that could easily have had adverse medical effects on me. This isn't the first problem we've had with the medical oversight of my oncology treatment and it's a little worrisome, to say the least, to have so little confidence in my oncology medical practitioner. Thankfully, the radiation team has my full confidence, and we'll get the oncology part of it figured out soon, I'm sure.
(Once we got the labs re-drawn, the results were all good and within the parameters the docs hope for so. Had it not been for the lab result fiasco, this would have been a good day.)
Radiation itself is no problem: they put a fitted mask over my face and lock it in and zap me 12 times in 12 different places. I don't get claustrophobic so it's no problem although since I'm starting to get moonfaced from the steroids, it's getting tighter every day. The chemo has a definite tendency to nauseate and to cause heartburn but that can all be managed with meds so bring it on. This tumor is going DOWN.
Kirk and I are about to sit down to a quiet dinner and a DVD and try to forget about chemo, radiation, doctors, and everything medical for the next few hours.
We love you. Thanks for keeping us so close in your hearts.
Hi all. My first time trying to post on my own. We'll see how it goes.
Even though I figured I'd be posting cheerier stuff on my blog, I kind of needed to just say what was on my mind.
Rough day. My treatment plan has me going in for radiation five days/week and for lab draws weekly. This was one of my lab draw days and all I can say is I don't think I've ever been so scared in my life (and I've been scared a lot lately) when the results came back with critical potassium values that were terrifyingly high, to say the least. Thanks to Kirk for insisting we get the nurse practitioner to re-draw and re-run the lab or I'd be going through a nasty treatment that could easily have had adverse medical effects on me. This isn't the first problem we've had with the medical oversight of my oncology treatment and it's a little worrisome, to say the least, to have so little confidence in my oncology medical practitioner. Thankfully, the radiation team has my full confidence, and we'll get the oncology part of it figured out soon, I'm sure.
(Once we got the labs re-drawn, the results were all good and within the parameters the docs hope for so. Had it not been for the lab result fiasco, this would have been a good day.)
Radiation itself is no problem: they put a fitted mask over my face and lock it in and zap me 12 times in 12 different places. I don't get claustrophobic so it's no problem although since I'm starting to get moonfaced from the steroids, it's getting tighter every day. The chemo has a definite tendency to nauseate and to cause heartburn but that can all be managed with meds so bring it on. This tumor is going DOWN.
Kirk and I are about to sit down to a quiet dinner and a DVD and try to forget about chemo, radiation, doctors, and everything medical for the next few hours.
We love you. Thanks for keeping us so close in your hearts.
First week of treatment done
I think the first week of treatment caught up with Alison. While she has some nausea (it has hit in a sort of random fashion so far) and some wicked-bad heartburn, the fatigue is now a prominent factor. Now when she goes to rest, she can actually nap a bit (see, it's a war between the fatigue and the mind-revving side effect of the steroids). On the other hand, I see her moving around her lap top a bit better, or reading a bit, but then she gets tired again. Whit (my husband-unit) was able to set her up with Pandora, that lovely program that lets one pick a song or composer or artist and then it makes a play list out of the huge music database it has. I mention this to convey that our girl is favoring very gentle tunes, those that calm and soothe, not too loud or too much in the way of dynamic variation or even lyrics. I would never have predicted that she would choose Gregorian chants or Renaissance motets as her preferred listening genres!
She has 5 weeks to go with the radiation; the chemo is a pill (Temodar) that she takes every day. Once the holidays are past, she and Kirk are hopeful that some sort of regular schedule will present itself, so that going to Herrick for the treatments will have a more dependable rhythm; so far, the timing of her appointments have been as varied as could be imagined. At some point, I think it will be wonderful for Alison and Kirk if healthy friends could drive her to some of her radiation appointments (Kirk will let us know when).
I think she wants you all to know that while she has good hours and overall good days, she is still acutely aware that her brain doesn't function as it did before. Her memory is impaired, so when she thinks she is going to call or email someone, it may be that she forgets to do that just a few minutes later. She still has word-finding challenges, so typing and even talking sometimes wears her out. She wants to relay that her contact with you all via these messages - and email and voice messages, too - is incredibly important, but she still doesn't have the energy to marshall to return calls or most emails. Keep your stories and touch-bases coming; they mean so much to her. Love,
Deborah
She has 5 weeks to go with the radiation; the chemo is a pill (Temodar) that she takes every day. Once the holidays are past, she and Kirk are hopeful that some sort of regular schedule will present itself, so that going to Herrick for the treatments will have a more dependable rhythm; so far, the timing of her appointments have been as varied as could be imagined. At some point, I think it will be wonderful for Alison and Kirk if healthy friends could drive her to some of her radiation appointments (Kirk will let us know when).
I think she wants you all to know that while she has good hours and overall good days, she is still acutely aware that her brain doesn't function as it did before. Her memory is impaired, so when she thinks she is going to call or email someone, it may be that she forgets to do that just a few minutes later. She still has word-finding challenges, so typing and even talking sometimes wears her out. She wants to relay that her contact with you all via these messages - and email and voice messages, too - is incredibly important, but she still doesn't have the energy to marshall to return calls or most emails. Keep your stories and touch-bases coming; they mean so much to her. Love,
Deborah
Saturday, December 26, 2009
Christmas Update from Palm Springs
Team Alison:
A quick update from Christa and Jon (who drove to PS yesterday). Although we did not get to share the Xmas holiday festivities with Alison et al, we spoke with them (AB, Kirk and Dani) last night and were so pleased to hear that they had a wonderful holiday. Alison was very chatty and apparently she has been nice and not naughty as Santa was quite good to her! she enjoyed having a day "off" from treatment (radiation) and not having to leave her peaceful home (a big treat as radiation and other medical appointments have had her out and about most days). Dani will be updating the blog soon with first hand (not second hand) information and hopefully photos (the Alison Reindeer pixie pix is pretty cute!)
Love to all,
cj
Wednesday, December 23, 2009
Attn: All Fans -- Mom's First Blog Entry :)
Mom, herself, isn't listed as a writer on this site yet (we'll fix that, now that she'll be adding her own entries, from time to time), so this entry is under my account, but completely written by mom. :)
Dani
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Hello to my wonderful friends and family.
Dani
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Hello to my wonderful friends and family.
First of all, for those of you who don’t know what’s going on, I’d suggest reading the second blog entry, written by my sister, Deborah. It was written only a couple of days after the surgery and diagnosis, and will explain all the medical details of my situation.
Not all synapses are firing these days but thanks to spell-check and the ability to revise as many times as it takes, I can generally communicate with some manner of lucidity …and then can turn over the job of updating the communications to my wonderful family if I need less computer time.
Been a rough and scary couple of months, with my brain literally scrambled and even basic written communication more difficult than you can imagine. (For instance, it just took me 8 times to type the word “imagine.”) Pretty spectacularly frustrating for a person who has always been so strong with language and communication. So…I’ll be counting on Kirk, Dani, and the rest of my wonderful family to keep people posted and I’ll add my updates as I’m able.
I’ve started my first week of radiation and chemo and I’m at the best place I could possibly be for this treatment (Herrick Hospital/Alta Bates). And the fact that the cancer is a bad one turns out to be a benefit, with better outcomes to the treatment than a “lesser” tumor. (Whoo-hoo!) The medical staff is unbelievably kind, competent, and committed. Shitty situation to be in but I count my blessings on so many levels. I have Kirk who is completely handling every aspect of my legal/financial issues on top of being my primary caretaker (with great assistance from daughter, Dani, and the rest of my family who is supporting me on every level); I have the best possible insurance (thank you union – the Calif. Nurses Association, and CHRO)…you get the idea.
I just wanted to take a minute to let you know that I’m doing my best to maintain optimism and good spirits and that all your good wishes and love and kind words of support and encouragement mean more than I can express. And that just because you haven’t heard from me doesn’t mean I’m not thinking of you and in full appreciation of your love and support. I fully expect communication to get easier as treatment continues, although the fatigue and other chemo/radiation side effects will take their toll, so I’ll join the update team as I’m able.
I’m not a religious person but I believe that we are all connected (yay, physics), and that when people are sending love and support out to others, we can draw strength from that connection and that it can heal from afar. So keep those positive thoughts going for me, however you choose to do it. I’ll take all the positive juju I can get! As completely miserable a thing this is to have to go through, I can’t help feeling how incredibly blessed I am to have so many people in my life who are pouring their love and support out to me in a way that I can literally feel in my heart and soul.
And to those of you who have expressed such strong desires to be of help in some more tangible ways, please know that I am so appreciative of that and that we would love to take you up on your offer…we just are still trying to focus on some day-to-day things that require our undivided attention. (Medical and legal issues…just what you want to be dealing with at a time like this, eh?)
Okay, so that’s it for now. And thank you again for your love, encouragement, and support. There’s just no way I can truly express how it helps me knowing you’re there behind me on all this.
Love,
Alison
Tuesday, 12/22
A fairly uneventful day; the first round of chemo took a toll on mom this morning and some serious nausea set in for awhile. It was better by 11 though, and she was back to eating with full-force by noon.
Mom got to visit with my boyfriend today, which she was extremely happy about. He stopped by on his way to his family's home, and this was no small feat: he's extremely allergic to cats. So the fact that he popped two Claritin-D's and braved the Lion's Den (as it were) for four and a half hours (and didn't explode) made her very happy to say the least. They got some good bonding time that she was afraid the cat-allergy-thing would deprive her of. So snacking, chatting and enjoying the view from Plaza Alison in the front yard predominated the better part of her midday.
No major headaches, she put herself down for a nap at about two thirty, and right after dinner she set up in her chair to read all the blog entries and comments that she's missed recently.
Sorry for the short entry, but I must sleep now. Thank you to everyone for sending your love and support. It means the world to her, and to us.
-Dani
Mom got to visit with my boyfriend today, which she was extremely happy about. He stopped by on his way to his family's home, and this was no small feat: he's extremely allergic to cats. So the fact that he popped two Claritin-D's and braved the Lion's Den (as it were) for four and a half hours (and didn't explode) made her very happy to say the least. They got some good bonding time that she was afraid the cat-allergy-thing would deprive her of. So snacking, chatting and enjoying the view from Plaza Alison in the front yard predominated the better part of her midday.
No major headaches, she put herself down for a nap at about two thirty, and right after dinner she set up in her chair to read all the blog entries and comments that she's missed recently.
Sorry for the short entry, but I must sleep now. Thank you to everyone for sending your love and support. It means the world to her, and to us.
-Dani
Monday, December 21, 2009
Monday, 12/21
Today was very long. I wasn't here for most of it, so my details will be sparse (I apologize). Many logistics didn't go as planned today, so to ask anyone to recount most of the day's events is basically to request a rant of frustration. (I thought I'd spare my parents this, as they've lived it well enough for the day.)
Mom went for her first round of radiation around noon today, and, as she put it, that was about the only thing that went smoothly. Her staples were removed -- somehow they ended up in a box that Kirk showed me during dessert, and that mom used as some kind of shaker-egg to add percussion to the theme of "Friends" -- and, although the radiation appointment itself was pushed back a couple of hours, everything went smoothly.
The following is somewhat secondhand, but what I gathered happened with the chemo today is that there was a fumble along the lines so that mom and Kirk were never given specific instructions as to how to administer the chemotherapy (it's in pill form and can be administered at home). So Kirk had the medication in his pocket by 8:30 or so this evening, but this isn't the kind of medication you want to "wing it" with. This ordeal took just about all day, and so mom will be taking her first round of chemo tonight after she's waited three hours after her last meal (...three hours. At that point, I'd be afraid she'd come after me for the carbohydrates under my fingernails from the sandwich I had earlier today. I'm washing my hands before bed and sleeping with the door locked.) ;)
Other than that, she's in pretty good spirits. It's been a very frustrating day around here because of complications in, around, and completely independent of this whole ordeal, and even at 11:20 p.m., some of these complications are still being dealt with because they need to be; but we're all trying, mom included, to keep her as calm and happy as possible. It was just one of those days.
P.S. I can hear her singing from her bedroom "I get to wash my hair tomorrow!"
She is SO excited about that -- due to her incision that needed healing over the past two weeks, she was only able to get portions of her head wet for washing. Tomorrow she gets to do the full-head shampoo. I'm thinking she'll be quite happy.
Mom went for her first round of radiation around noon today, and, as she put it, that was about the only thing that went smoothly. Her staples were removed -- somehow they ended up in a box that Kirk showed me during dessert, and that mom used as some kind of shaker-egg to add percussion to the theme of "Friends" -- and, although the radiation appointment itself was pushed back a couple of hours, everything went smoothly.
The following is somewhat secondhand, but what I gathered happened with the chemo today is that there was a fumble along the lines so that mom and Kirk were never given specific instructions as to how to administer the chemotherapy (it's in pill form and can be administered at home). So Kirk had the medication in his pocket by 8:30 or so this evening, but this isn't the kind of medication you want to "wing it" with. This ordeal took just about all day, and so mom will be taking her first round of chemo tonight after she's waited three hours after her last meal (...three hours. At that point, I'd be afraid she'd come after me for the carbohydrates under my fingernails from the sandwich I had earlier today. I'm washing my hands before bed and sleeping with the door locked.) ;)
Other than that, she's in pretty good spirits. It's been a very frustrating day around here because of complications in, around, and completely independent of this whole ordeal, and even at 11:20 p.m., some of these complications are still being dealt with because they need to be; but we're all trying, mom included, to keep her as calm and happy as possible. It was just one of those days.
P.S. I can hear her singing from her bedroom "I get to wash my hair tomorrow!"
She is SO excited about that -- due to her incision that needed healing over the past two weeks, she was only able to get portions of her head wet for washing. Tomorrow she gets to do the full-head shampoo. I'm thinking she'll be quite happy.
Sunday, December 20, 2009
Sunday 12-20-09 update
From Brother Jon: I want to remind Alison that we have pictures, and we're not afraid to use them!We visited Alison today (Matt, Christa, and myself.) Christa, Danielle, and Alison viewed pictures that Christa had collected, while Matt and I installed the new handrails on the stairs. Much to my surprise, they fit the first time, and are sturdily attached and ready for AB’s gymnastic moves. They are ready for stain and finish, so one home project down and another to go!
Alison looked great today, and was strong and in good spirits. Tomorrow is Day 1 for radiation and chemo. It should be a long day, as she needs to have her surgical staples removed first (otherwise, picture an image of aluminum foil in a microwave!) and have some sort of previsit instruction. We will all be thinking of AB tomorrow and hope the first day goes well.
Danielle was there today, but has a performance in Monterey this evening and will leave Kirk and AB alone tonight… but I think she will be back in the morning.
It was not too long of a visit today, and I had my work to do and had to be done before Alison’s nap! So that is all I have for now… --JB
Saturday, December 19, 2009
Saturday Spa Day!
Mom did very well today. Here's pretty much a rundown of the whole day:
We started off bright and early with a lovely breakfast by Kirk: eggs with onion, cheese and bell peppers, sour cream and salsa, and a side of bacon and fruit. No one put their fingers near mom or her plate during this time, for obvious safety reasons regarding her ferocious appetite. (As Kirk has been lovingly saying all day, "cooking for her has never been so fun in all these thirteen years as it has been these past few weeks.")
Christmas preparations have been slow this year, so at 9 a.m, while our favorite Like-A-Daughter (our wonderful Jen) came over to hang with mom, Kirk and I went out in search of a Christmas tree. We found a great, full little 5-foot-something tree and had it home by 10:15. By 10:30 mom and I were out the door to a nail appointment at Bellissima Spa for a couple hours of mani/pedi (that's "manicures and pedicures" in actual English) heaven -- complete with leg and arm massages and foot soaks in warm water with rose petals. It was the perfect place for mom; from the tranquil music and sweet little water fountains, to the professional and very accommodating staff. This was MUCH better than going to a nail salon, under the circumstances. Mom was great the whole time; she was relaxed and happy the whole time (don't worry, we paused the pampering to make sure medication was issued on time). Me thinks we'll be back. :)
Jen stayed in the house to work on the secret Christmas project she and I are working on for mom (it's secret, I can't tell you yet!), and Kirk did some work on his own; when mom and I got back, she had lunch and Kirk and I scooted out the door for a little Christmas shopping (there's been zero time for this so far). Sweet Jen stayed with mom, who attempted to nap, while we were out.
We got home, and Kirk ran back out shortly after for more errands -- Jen, mom and I visited and did lots of laughing. There's no feeling quite like making mom laugh, especially during these stressful times.
Mom's headaches have been minimal to non-existent all day; she has been very good about letting us know whenever she has felt a hint of headache coming on, and we medicate appropriately. However, she seems to have had a good day overall, and headaches fortunately seemed to be too intimidated to come out. (GOOD! STAY BACK, YOU HEADACHES!!!)
She does have some consistent strobing in the right field of her vision, which is annoying to say the least, but not too debilitating.
Jon (who, as I pointed out at one of my earliest birthdays, is the uncle who assembles), will be over at eleven tomorrow morning to install some hand rails to help mom up and down the stairs and around the house. She's pretty stable as of now, but the vision part can be tricky for her, and once she starts chemo next week, they will likely be helpful if she has any moments of physical weakness. We're not anticipating a strong dependency on them, but...SAFETY FIRST! :)
On another note, I have been alerted by several people that, upon attempting to post a comment, some of you are being met with a prompt to enter your "user name and URL." I will contact our site's technical support (cousin Lara) and see about fixing or interpreting this as soon as possible. Mom loves hearing from you; we can see the comfort and love it brings her every time she reads her "fan mail," or hears relayed well-wishes, so rest assured your loving and supportive comments will not be hindered for long. :)
As Deborah has already said in previous posts, this blog and "snail mail" are the best ways to contact her (logging into her email is slightly overstimulating for her visually at times, so that isn't the fastest means of contact for now), until things are a little more manageable.
Mom tells me regularly that she has "no idea how some people make it through something like this alone," and as I always tell her, knowing how many people she has behind her 110% of the way: Fortunately, she'll never have to.
I'll get this comment-posting thing fixed a.s.a.p.
-Dani
We started off bright and early with a lovely breakfast by Kirk: eggs with onion, cheese and bell peppers, sour cream and salsa, and a side of bacon and fruit. No one put their fingers near mom or her plate during this time, for obvious safety reasons regarding her ferocious appetite. (As Kirk has been lovingly saying all day, "cooking for her has never been so fun in all these thirteen years as it has been these past few weeks.")
Christmas preparations have been slow this year, so at 9 a.m, while our favorite Like-A-Daughter (our wonderful Jen) came over to hang with mom, Kirk and I went out in search of a Christmas tree. We found a great, full little 5-foot-something tree and had it home by 10:15. By 10:30 mom and I were out the door to a nail appointment at Bellissima Spa for a couple hours of mani/pedi (that's "manicures and pedicures" in actual English) heaven -- complete with leg and arm massages and foot soaks in warm water with rose petals. It was the perfect place for mom; from the tranquil music and sweet little water fountains, to the professional and very accommodating staff. This was MUCH better than going to a nail salon, under the circumstances. Mom was great the whole time; she was relaxed and happy the whole time (don't worry, we paused the pampering to make sure medication was issued on time). Me thinks we'll be back. :)
Jen stayed in the house to work on the secret Christmas project she and I are working on for mom (it's secret, I can't tell you yet!), and Kirk did some work on his own; when mom and I got back, she had lunch and Kirk and I scooted out the door for a little Christmas shopping (there's been zero time for this so far). Sweet Jen stayed with mom, who attempted to nap, while we were out.
We got home, and Kirk ran back out shortly after for more errands -- Jen, mom and I visited and did lots of laughing. There's no feeling quite like making mom laugh, especially during these stressful times.
Mom's headaches have been minimal to non-existent all day; she has been very good about letting us know whenever she has felt a hint of headache coming on, and we medicate appropriately. However, she seems to have had a good day overall, and headaches fortunately seemed to be too intimidated to come out. (GOOD! STAY BACK, YOU HEADACHES!!!)
She does have some consistent strobing in the right field of her vision, which is annoying to say the least, but not too debilitating.
Jon (who, as I pointed out at one of my earliest birthdays, is the uncle who assembles), will be over at eleven tomorrow morning to install some hand rails to help mom up and down the stairs and around the house. She's pretty stable as of now, but the vision part can be tricky for her, and once she starts chemo next week, they will likely be helpful if she has any moments of physical weakness. We're not anticipating a strong dependency on them, but...SAFETY FIRST! :)
On another note, I have been alerted by several people that, upon attempting to post a comment, some of you are being met with a prompt to enter your "user name and URL." I will contact our site's technical support (cousin Lara) and see about fixing or interpreting this as soon as possible. Mom loves hearing from you; we can see the comfort and love it brings her every time she reads her "fan mail," or hears relayed well-wishes, so rest assured your loving and supportive comments will not be hindered for long. :)
As Deborah has already said in previous posts, this blog and "snail mail" are the best ways to contact her (logging into her email is slightly overstimulating for her visually at times, so that isn't the fastest means of contact for now), until things are a little more manageable.
Mom tells me regularly that she has "no idea how some people make it through something like this alone," and as I always tell her, knowing how many people she has behind her 110% of the way: Fortunately, she'll never have to.
I'll get this comment-posting thing fixed a.s.a.p.
-Dani
Friday, December 18, 2009
A visit on Friday
I had a brief visit with Alison tonight. She was in good spirits and it was so wonderful to see her. She has had a couple of busy days preparing for next week’s treatment and it is taking a toll. Dani arrived today for a “winter break” visit. This definitely perks her up! She (and we) is so grateful for all the love and support she has received from everyone. - cj (sister-in-law Christa [Jon's Wife]).
A good Thursday
It sounds like Thursday was a good day, perhaps a bit tiring for having to be at the Radiation Oncologist's at 0-dark thirty to get the mask made (it is white) and radiation simulation done. Alison says she is able to rest better during the day, though she is back on the big dose of decardron (steroid), so it's hard to actually sleep until the peak of the decadron dose wears off - and thank you to the makers of our current favorite sleeping pill. She says she feels better in that she can read a bit (that was too hard to do last week). Kirk continues to make her meals worthy of a Gourmet magazine photo spread, and Alison remains highly enthusiasic about these meals (so says Nine Fingers Kirk). For someone who was previously appreciative of food but certainly not a Foodie, this is quite entertaining to those sharing a meal.
Bird-watching: send all the colorful and personable birds in the Bay Area to the bird-feeders on their deck; she has become an even more avid bird-watcher these days. If anyone runs across a simple laminated bird ID card with the common Bay Area birds with pictures and names, that would be a cool thing for her to have in her sitting chair, since names of things sometimes get a bit jumbled. (We had these kinds of cards for fish on our Hawaii trip, and it was quite helpful).
Her daugher, Dani, will be there for the next few days and will give us some first hand reports. Dani brings such joy to Alison, the next days will be very bright.
And, a Woody Allen quote, because I like it: "I am thankful for laughter, except when milk comes out of my nose." - Deborah
Bird-watching: send all the colorful and personable birds in the Bay Area to the bird-feeders on their deck; she has become an even more avid bird-watcher these days. If anyone runs across a simple laminated bird ID card with the common Bay Area birds with pictures and names, that would be a cool thing for her to have in her sitting chair, since names of things sometimes get a bit jumbled. (We had these kinds of cards for fish on our Hawaii trip, and it was quite helpful).
Her daugher, Dani, will be there for the next few days and will give us some first hand reports. Dani brings such joy to Alison, the next days will be very bright.
And, a Woody Allen quote, because I like it: "I am thankful for laughter, except when milk comes out of my nose." - Deborah
Thursday, December 17, 2009
starting radiation and chemo therapies
Wednesday was a big day for Alison, as she met with the medical and radiation oncologists. Today she is fitted for her mask; to receive the exact and precise radiation therapy beams, a patient has a mold of her face made so that she can place her face into it and hold still in the exact position in space to map to computer's coordinates of where to send the radiation beams (if that makes sense). We'll find out from Kirk for certain, but my understanding from him is that her staples come out on Monday and the actual radiation therapy (RT) starts on Monday just as soon as those staples are out.
A bright spot and a blessing: a woman that Alison went to nursing school with went on to become a nurse practitioner and works in the medical oncologist's office! These two like each other a lot, and Alison speaks highly of her skills and kindness. Talk about a good place to have access to an "inside (wo)man"! Alison cherishes her networks of fabulous people, and of course, you all know that she is a person that everyone wants to stay connected with. So yay for this newest "kismet", coincidence, Kurt Vonnegut's "karass" (remember that? I had to Google it to get the term back - a group of people who are working together, often unknowingly, to do good) - you are all in Alison's 'karass'.
A bright spot and a blessing: a woman that Alison went to nursing school with went on to become a nurse practitioner and works in the medical oncologist's office! These two like each other a lot, and Alison speaks highly of her skills and kindness. Talk about a good place to have access to an "inside (wo)man"! Alison cherishes her networks of fabulous people, and of course, you all know that she is a person that everyone wants to stay connected with. So yay for this newest "kismet", coincidence, Kurt Vonnegut's "karass" (remember that? I had to Google it to get the term back - a group of people who are working together, often unknowingly, to do good) - you are all in Alison's 'karass'.
Wednesday, December 16, 2009
Hi all, I am sorry I didn't get to post anything yesterday. I talked to Lara, who has remained Alison and Kirk's faithful support person aka scullery maid in Berkeley, and when I talked with Alison she confirmed that Tuesday was a good day. Her headache continues to improve, she doggedly (sorry about that to the Cat People) walked about 30 minutes with Lara because she is determined to keep her conditioning up; and never fear, her appetite remains healthy (this is a euphemism: she is still on a pretty good dose of the decadron [steroid for brain swelling] and will cheerfully tuck in to almost any food item put in her sight lines. Keep your fingers back, I warn you!).
She and Kirk will meet with the medical oncologist today (radiation oncologist is next week) to hear about that treatment.
She is so much better than a week ago that she and Kirk are going to fly solo for a couple of days, meaning Lara leaves today; frankly, I think they are sick of us and ready to have their space back for a bit. But ha! Daughter Dani is finishing the semester-end stuff in Monterey (Cal State Monterey Bay student) and is heading up Friday to add her assistance and lovely presence; so we will have Dani's first hand reports to keep us up to date. I guess Dani had better check in with Lara regarding the extent of scullery maid responsibilities...we love our young 'uns.
Thank you all for posting your comments - it gives Alison one easy place to go to look for her "fan mail". Cards are great, too, and email to her is OK, but I don't know how much she is checking there (a bit more eye strain, I think). If anyone has something they would like us to post on this main area, feel free to email me at whit@got.net, or leave a message in the Comments. Love to you all, Deborah
She and Kirk will meet with the medical oncologist today (radiation oncologist is next week) to hear about that treatment.
She is so much better than a week ago that she and Kirk are going to fly solo for a couple of days, meaning Lara leaves today; frankly, I think they are sick of us and ready to have their space back for a bit. But ha! Daughter Dani is finishing the semester-end stuff in Monterey (Cal State Monterey Bay student) and is heading up Friday to add her assistance and lovely presence; so we will have Dani's first hand reports to keep us up to date. I guess Dani had better check in with Lara regarding the extent of scullery maid responsibilities...we love our young 'uns.
Thank you all for posting your comments - it gives Alison one easy place to go to look for her "fan mail". Cards are great, too, and email to her is OK, but I don't know how much she is checking there (a bit more eye strain, I think). If anyone has something they would like us to post on this main area, feel free to email me at whit@got.net, or leave a message in the Comments. Love to you all, Deborah
Monday, December 14, 2009
A Hanukkah poem
It's been a week since surgery, and all day today I was remembering that today was the day surgery had been originally scheduled. I'm so glad the surgery is behind her. Alison says this was a good day, the most she has felt her "normal self", the confusion lifting, the headache controlled, the vision issue surmountable. The Occupational Therapy home health specialist came out to the house to make sure Alison makes any needed adaptations in her home, and on her vision testing, she found that some of the area that was gone has come back! Alison and Kirk walked a bit in our break from the rain, and Al is stronger.
Kirk, Alison and Lara were graced by "like-a-daughter" Jen (their words), because that is the Monday night ritual - Jen comes to visit. Good food, relaxing together, I think they watched a fun movie, and Alison sounds content tonight.
I heard Rabbi Paula speaking here in Santa Cruz about the origins of Hanukkah, how it was originally a military victory that the rabbis re-interpreted to be an event that embodies hope and faith; the Maccabees lit the oil for the lamps even though it was obviously NOT enough. They didn't know if the oil would last, but they lit the lamp anyways. A lovely woman and fellow singer named Holly sent this poem, which sums up more than Hanukkah for me. An offering to you all, with her permission. Love, Deborah
Miracle
Even if you think
it’s too late
too long
too little
too much to ask
too much to expect
too much to dream
too much to risk
Strike the spark
kindle the wick
hover,
breathless,
as the dwindling flame
retracts its heat
deep down
into the oil
and then springs up
into brightness
engorged
with the green-gold essence
and dances
in firelight
Dances and dances,
beyond all imaginings
night after night
like a pillar of fire
guiding us from faraway
downtrodden
despair
back into faith
Back into Light
reconsecrated
rededicated
ablaze.
_\\//
hallel bat-malkah
aka Holly Blue Hawkins
Kirk, Alison and Lara were graced by "like-a-daughter" Jen (their words), because that is the Monday night ritual - Jen comes to visit. Good food, relaxing together, I think they watched a fun movie, and Alison sounds content tonight.
I heard Rabbi Paula speaking here in Santa Cruz about the origins of Hanukkah, how it was originally a military victory that the rabbis re-interpreted to be an event that embodies hope and faith; the Maccabees lit the oil for the lamps even though it was obviously NOT enough. They didn't know if the oil would last, but they lit the lamp anyways. A lovely woman and fellow singer named Holly sent this poem, which sums up more than Hanukkah for me. An offering to you all, with her permission. Love, Deborah
Miracle
Even if you think
it’s too late
too long
too little
too much to ask
too much to expect
too much to dream
too much to risk
Strike the spark
kindle the wick
hover,
breathless,
as the dwindling flame
retracts its heat
deep down
into the oil
and then springs up
into brightness
engorged
with the green-gold essence
and dances
in firelight
Dances and dances,
beyond all imaginings
night after night
like a pillar of fire
guiding us from faraway
downtrodden
despair
back into faith
Back into Light
reconsecrated
rededicated
ablaze.
_\\//
hallel bat-malkah
aka Holly Blue Hawkins
Sunday, December 13, 2009
Post op Day 6, doing well
Today went pretty well. Alison and Kirk visited with some immediate family, ate a few more latkes and pretty well tuckered themselves out. Part of what is exhausting for Alison is that she has deficits in her right "visual fields" - not just her right eye, but the right side of both eyes are pretty much gone because of the tumor location in the left occipital area (a vision center). Now, post op days 5 and 6, she is getting strobe-like symptoms in the right side of her vision, which you might imagine is a lot to cope with when walking, eating, trying to watch something on TV. Bless him, Kirk is there for her every step up or down stairs, and Alison is patient about waiting for help before walking somewhere where the footing might be uneven. We are hopeful that the strobe effect is neurons trying to put new pathways together, and represent some healing as the brain swelling goes down.
Tonight, (niece) Lara is there to help support them, and I hear from Lara that at present everyone's moods are good, and they are winding down for bedtime. I believe the physical therapist was out today to look at any home modifications that might be needed, and to evaluate her for rehab needs. I think Kirk and brother Jon (the ex-contractor) have plans a-foot to enhance certain safety features dealing with stairs and walkways. As Alison is fond of saying, she has a "deep bench" when it comes to support, and a lot of folks with fabulous skill sets have already pitched in!
She tears up and LOVES it every time we relay one of your messages to her; it means so much to her to know her "peeps" are thinking of her. Thank you to all for your love and support. -Deborah (Alison's sister, to those of you I don't know yet!)
Tonight, (niece) Lara is there to help support them, and I hear from Lara that at present everyone's moods are good, and they are winding down for bedtime. I believe the physical therapist was out today to look at any home modifications that might be needed, and to evaluate her for rehab needs. I think Kirk and brother Jon (the ex-contractor) have plans a-foot to enhance certain safety features dealing with stairs and walkways. As Alison is fond of saying, she has a "deep bench" when it comes to support, and a lot of folks with fabulous skill sets have already pitched in!
She tears up and LOVES it every time we relay one of your messages to her; it means so much to her to know her "peeps" are thinking of her. Thank you to all for your love and support. -Deborah (Alison's sister, to those of you I don't know yet!)
Saturday, December 12, 2009
Saturday at home
Alison is snugged in at home, watching dramatic wind and rain beating across the Bay. She has had a good day, taking it easy, enjoying her giant appetite and taking cat naps. When we say cat naps, we do mean with Hightops, the 17 pound feline who sticks to her like a shadow (they are often found napping, with Hightops' front paws daintily placed somewhere on Alison).
That's about it - I guess a good day means a short note! Alison says thanks to everyone for their wonderful well wishes, and she sends back her love.
That's about it - I guess a good day means a short note! Alison says thanks to everyone for their wonderful well wishes, and she sends back her love.
Friday, December 11, 2009
Happy Hanukah, Alison is at home!
After a night at UCSF of trying to get her headache under control, we found the right drug at the right dose. Before heading home, we managed to sqeeze in a meeting with her medical neuro-oncologist, Susan Chang MD, who was kind and informative. She relayed the consensus of the Tumor Board, which is that this tumor is a Grade 4 glioblastoma, and she needs to get her treatment started ASAP. So as soon as her staples are out, she will start radiation therapy (her skin needs to heal before the radiation starts); she will get an oral chemotherapy at the same time. She will be able to have the treatments at Alta Bates, which is an excellent medical center here in Berkeley. Dr. Chang at UCSF will continue to provide overall supervision and direction of her care. This regimen will take six weeks, with two weeks off therapy following. After that it's another MRI and assessment from there as to how to proceed.
This is a lot to take in - all the treatments to come, the magnitude of this diagnosis, how fast this has all happened. Alison has times of being overwhelmed; then she rallies and takes in the blessings of all the people who love her and is in awe that she has that kind of fortune. She had a good night tonight (with one rough patch). A non-hospital dinner with Kirk, Deborah and Lara improved things greatly, she lit the Menorrah, and reassured her cat that his person has come home. All in all, she is much more comfortable being in her own home, and that is helping all the other aspects - her headache is better, her mood is mostly good, she is talking more and her memory and other things that were sources of frustration seem to be improved.
This weekend is going to be a time for her to rest and gather her strength, so while written comments, emails and well-wishes are absolutely welcome, she's not ready for visitors just yet. She actually got to look over this blog for the first time tonight, and please be assured that she sees and appreciates all the love and support. Now it's time for a little Harry Potter and bed, so more updates tomorrow. -Deborah
This is a lot to take in - all the treatments to come, the magnitude of this diagnosis, how fast this has all happened. Alison has times of being overwhelmed; then she rallies and takes in the blessings of all the people who love her and is in awe that she has that kind of fortune. She had a good night tonight (with one rough patch). A non-hospital dinner with Kirk, Deborah and Lara improved things greatly, she lit the Menorrah, and reassured her cat that his person has come home. All in all, she is much more comfortable being in her own home, and that is helping all the other aspects - her headache is better, her mood is mostly good, she is talking more and her memory and other things that were sources of frustration seem to be improved.
This weekend is going to be a time for her to rest and gather her strength, so while written comments, emails and well-wishes are absolutely welcome, she's not ready for visitors just yet. She actually got to look over this blog for the first time tonight, and please be assured that she sees and appreciates all the love and support. Now it's time for a little Harry Potter and bed, so more updates tomorrow. -Deborah
Alison on Maui -- October 2009
In the two weeks prior to headaches and hospitals, Alison and Kirk were in Hawaii. When they weren't snorkeling and annoying the green sea turtles they might be found on the patio near the beach at the Napili Kai enjoying some food and tropical drink...
Thursday, December 10, 2009
Thursday afternoon 12/10
We hear from the folks there at UCSF with Alison - Kirk and Dani - that Alison got her drain out today, so if she can get her headache controlled with oral medications, she will be able to go home tonight! Whoopeee! We'll keep you posted.
We know you all want to talk to Alison and/or give her your best wishes in person...please remember that the next few days will be a time for her to settle in at home, rest, and recover. Please post your comments, questions, and good wishes to the blog. Alison will see and/or hear about it from us. We will keep you posted about when she is ready for calls and visitors. -- Deborah
We know you all want to talk to Alison and/or give her your best wishes in person...please remember that the next few days will be a time for her to settle in at home, rest, and recover. Please post your comments, questions, and good wishes to the blog. Alison will see and/or hear about it from us. We will keep you posted about when she is ready for calls and visitors. -- Deborah
Wednesday, December 9, 2009
Quick update 12/9/09
Spending the night in the hospital room with mom -- she's doing great. Getting regular visits from her nurse (she always gets the cute boys), taking a good nap right now, and should be getting woken up by her nurse Andrew (Andrew and Danielle nurses, Jen the physical therapist...we don't like new names in this family anyway...) for her steriods and other meds in about 15 minutes. Next round at 2:30. I'm hoping her nurse likes me enough to share some of that sleeping pill stock (NO, not really. I'm on guard duty!), because she's snoring, but I almost certainly will not be.
Some may have known, but I did not, that the hosptial is NOT a good place if what you want is a good night's sleep. But they are taking excellent care of her, and, true to form, she is recovering very quickly -- you wouldn't know she was day-two post-op if you looked at her. She's got great color, muscle control, motor function, she's up and walking around by herself (hell, if I had a penny for every time she's shooed me away from helping her around the room tonight, I'd be clear for Christmas shopping)...but I'm still following right behind her anyway. Don't tell her. :) She's being very strong in an unsure, scary and frustrating time. I'm so proud to be her daughter.
There has been talk of her being discharged tomorrow, but we're not quite sure yet; and, as Deborah mentioned, the tumor board meets tomorrow afternoon, so we'll have a better plan of action soon after that. We will keep everyone posted.
-Dani
Some may have known, but I did not, that the hosptial is NOT a good place if what you want is a good night's sleep. But they are taking excellent care of her, and, true to form, she is recovering very quickly -- you wouldn't know she was day-two post-op if you looked at her. She's got great color, muscle control, motor function, she's up and walking around by herself (hell, if I had a penny for every time she's shooed me away from helping her around the room tonight, I'd be clear for Christmas shopping)...but I'm still following right behind her anyway. Don't tell her. :) She's being very strong in an unsure, scary and frustrating time. I'm so proud to be her daughter.
There has been talk of her being discharged tomorrow, but we're not quite sure yet; and, as Deborah mentioned, the tumor board meets tomorrow afternoon, so we'll have a better plan of action soon after that. We will keep everyone posted.
-Dani
Alison had surgery this Monday, December 7, 2009, at UCSF for a brain tumor that made its unwelcome presence felt at the end of October. The preliminary diagnosis is "glioblastoma". We will have a final diagnosis on Thursday the 10th. Glioblastomas are a type of brain tumor without any specific cause, they just happen.
For those of you who don’t know the story: Alison has a history of migraines. She was actually hale and hearty through the third week of October, during her vacation in Hawaii. By the last week of October she had significant fatigue, then the symptoms that we now know to be the brain tumor began: some confusion, difficulty finding the word she was looking for, trouble putting the steps of a task in the right order. She went to work on October 30, not feeling quite right, and ended up at Children’s Hospital Oakland ER with a severe headache and disorientation. She was seen by a neurologist and had an MRI. At first we thought this could be an acute inflammatory reaction in the brain causes by the flu or by the H1N1 vaccine that she had in October. However after reexamining the MRI, she was referred for a consultation with a neurosurgeon at UCSF. He proposed a course of corticosteroids (like cortisone)and then reevaluate her clinically and with sophisticated MRI techniques. She did not get better, and the scans were suggesting a diagnosis of brain tumor. She was scheduled for surgery on December 14, 2009. As she waited the 10 days for surgery, she continued to have problems with memory, word finding, and developed some balance issues. By this past weekend (the 5th and 6th), she had worsening symptoms. The final straw was a feeling on numbness on the right side of her body. She went to Alta Bates ER Sunday night (12/6/09) and was then transferred to UCSF. After repeat scans, the neurosurgeon did not think she should wait until next week and put her on the surgery schedule first thing Monday morning.
So, Monday, 12/7/09, “a day that will live in infamy” which Kirk says to Alison every year because it also happens to be their anniversary, Alison went into surgery. Dr. Parsa took out a 4 x 3 cm lesion in her left parietal area, but did not feel he could safely remove a smaller (2 x 3 cm lesion) second area or the bridge between the two lesions. Dr. Parsa did not want to damage healthy brain tissue while attempting to reach tumor. He estimates he was able to take out about 75% of the tumor "load" that was there.
Alison being Alison, she rallied through the post operative period and had fewer symptoms shortly after surgery than she did prior to surgery! She still has issues -- the peripheral vision to her right side is gone and she still has some memory and word finding difficulties. However she is speaking clearly, knows everyone, is moving all four limbs well and most importantly she is definitely her sweet and sparkly self. After only one day in the Neuro ICU, she is recovering from surgery wonderfully. She has some post op headache (NO KIDDING????!!!), is eating like The Hulk (can you say “steroids?” -- used to decrease the brain swelling) and is walking and talking. She is on the medical floor at UCSF, but visitors are limited as she is prone to getting over-stimulated at this early stage of her recovery. She will be going home in the next day or two.
We are still awaiting the final pathology diagnosis. A fancy entity called the Tumor Board will convene on 12/10/09 and all the experts at UCSF in pathology, neurosurgery, medical oncology and radiation oncology will confer about her and make a recommendation as to best treatment option(s) for her.
We who love Alison know this: she loves cards, emails, good wishes, and human contact. On the other hand, overstimulation comes easily, so in these early days, phone calls are a bit too much. Questions frustrate her when she can’t come up with the words or the recall for the answer. We’ll keep you posted via the blog. Kirk is at Command Central, he has a lot of things to keep track of, so again written communication will likely work best for now. -- Deborah
For those of you who don’t know the story: Alison has a history of migraines. She was actually hale and hearty through the third week of October, during her vacation in Hawaii. By the last week of October she had significant fatigue, then the symptoms that we now know to be the brain tumor began: some confusion, difficulty finding the word she was looking for, trouble putting the steps of a task in the right order. She went to work on October 30, not feeling quite right, and ended up at Children’s Hospital Oakland ER with a severe headache and disorientation. She was seen by a neurologist and had an MRI. At first we thought this could be an acute inflammatory reaction in the brain causes by the flu or by the H1N1 vaccine that she had in October. However after reexamining the MRI, she was referred for a consultation with a neurosurgeon at UCSF. He proposed a course of corticosteroids (like cortisone)and then reevaluate her clinically and with sophisticated MRI techniques. She did not get better, and the scans were suggesting a diagnosis of brain tumor. She was scheduled for surgery on December 14, 2009. As she waited the 10 days for surgery, she continued to have problems with memory, word finding, and developed some balance issues. By this past weekend (the 5th and 6th), she had worsening symptoms. The final straw was a feeling on numbness on the right side of her body. She went to Alta Bates ER Sunday night (12/6/09) and was then transferred to UCSF. After repeat scans, the neurosurgeon did not think she should wait until next week and put her on the surgery schedule first thing Monday morning.
So, Monday, 12/7/09, “a day that will live in infamy” which Kirk says to Alison every year because it also happens to be their anniversary, Alison went into surgery. Dr. Parsa took out a 4 x 3 cm lesion in her left parietal area, but did not feel he could safely remove a smaller (2 x 3 cm lesion) second area or the bridge between the two lesions. Dr. Parsa did not want to damage healthy brain tissue while attempting to reach tumor. He estimates he was able to take out about 75% of the tumor "load" that was there.
Alison being Alison, she rallied through the post operative period and had fewer symptoms shortly after surgery than she did prior to surgery! She still has issues -- the peripheral vision to her right side is gone and she still has some memory and word finding difficulties. However she is speaking clearly, knows everyone, is moving all four limbs well and most importantly she is definitely her sweet and sparkly self. After only one day in the Neuro ICU, she is recovering from surgery wonderfully. She has some post op headache (NO KIDDING????!!!), is eating like The Hulk (can you say “steroids?” -- used to decrease the brain swelling) and is walking and talking. She is on the medical floor at UCSF, but visitors are limited as she is prone to getting over-stimulated at this early stage of her recovery. She will be going home in the next day or two.
We are still awaiting the final pathology diagnosis. A fancy entity called the Tumor Board will convene on 12/10/09 and all the experts at UCSF in pathology, neurosurgery, medical oncology and radiation oncology will confer about her and make a recommendation as to best treatment option(s) for her.
We who love Alison know this: she loves cards, emails, good wishes, and human contact. On the other hand, overstimulation comes easily, so in these early days, phone calls are a bit too much. Questions frustrate her when she can’t come up with the words or the recall for the answer. We’ll keep you posted via the blog. Kirk is at Command Central, he has a lot of things to keep track of, so again written communication will likely work best for now. -- Deborah
Saturday, December 5, 2009
First Post!
Hello, Everyone!
This is just sort of an introductory post from Alison's niece as a way of getting the ball rolling. Kirk (and perhaps Alison herself, should she prove interested) will be taking over things from here, but for now, this is here to take up space.
And that's about that from me. More to come later!
This is just sort of an introductory post from Alison's niece as a way of getting the ball rolling. Kirk (and perhaps Alison herself, should she prove interested) will be taking over things from here, but for now, this is here to take up space.
And that's about that from me. More to come later!
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