sending stories?

Jon and I each had a chance to see Alison this past weekend. Her condition is slowly deteriorating as she becomes weaker and with more debility. While I was there, she mostly slept. When she was awake, she could participate a little in conversation, mostly with one or two words to interject or react. Word-finding is so hard that she can’t complete a full sentence most of the time. But she clearly understands well what is said – she takes in language just fine, the problem is in getting the words out.

Kirk has the downstairs set up as her room. She has a hospital bed, and hospital-type amenities as she really can’t get out of bed except with a lot of help. She seems to prefer her eyes being closed –she listens, but it seems like it’s a lot of work for her when her eyes are open. Her appetite is OK, though not as robust as it was even three weeks ago. Kirk has arranged for home health aides to be there for both a day shift and a night shift, so he has that kind of on site support for Alison’s care, light housekeeping, etc.

Sometimes she seems so terribly sad (frightened? Unhappy? Frustrated?), though she doesn’t have the words to really explain why. Some nights are good and she sleeps well, some are fraught with restlessness or agitation. She does like a good laugh, and will chuckle away at a funny story.

I have the idea that she likes to hear the “old stories” – things that happened some years ago, that make her laugh or smile. I wonder if those of you with a good “Alison story” could jot it down and send it to her in a card, so that she can share a smile with you about something that made you laugh or pleased you both? Alternatively, if you want to post your story as a comment on the blog, I’m sure someone will read it to her. While her short-term memory is massively impaired, she has great long-term memory. If you have the inclination, I think your stories might really cheer her up. Thanks so much.

From Sunday 4/17/2011

I had a brief visit with Alison on Sunday. Our Dad and wife Judy came up to see her, as did her niece from Virginia (Lara).

Alison seems significantly more tired and weak. Her sentences are fairly short, and Dani reports that she is having more trouble getting a thought finished. The stairs pretty much exhaust her, so I believe Kirk is planning to get a hospital bed in fairly soon. She barely lifts her feet when she walks, but she walks. Kirk and Dani say that she wants to be able to say her good-byes. She is not in pain. It is just very sad to see her, she is so subdued and fragile.

Hopefully, her niece can provide more details after she finishes her visit. Thank you for posting your comments. It is comforting to me to see the people who love Alison continuing to check in on how she is.

Report from Berkeley

I had a chance to see Alison (and Kirk and Dani) over the past couple of days. My husband and I were in Berkeley to give some in-home support, as it were. Alison seems pretty sad and emotionally fragile, though able to rally and smile and laugh if there are ‘lighter’ things to talk about and share. She was not in ANY pain as of yesterday. She naps for fairly long stretches at a time. She is managing fair-to-middling in terms of walking on a flat surface, relying on her cane and often a human assistant as well. She had experienced problems with coordination of her right arm prior to the UCSF admission, but was using her hand OK when I saw her (though there is weakness). Her main struggle is probably finding words – especially nouns – they are really pesky for her – but also just holding on to a thought from the beginning of the thought to the second half of the sentence. It frustrates her. The people around her are figuring out some coping strategies to decrease her frustration, and help her make her wants and needs known. Then again, there are times she comes up with comments and details that seem quite precise, as in remembering a particular restaurant in Oakland with toys displayed when she was talking with her cousin Hannah this weekend. When her memory is jogged about something, she seems to exactly remember what is referred to. Maybe it’s the fluctuation in how rested she is, or how the steroids are countering any brain swelling, or certain memories might be out of the reach of the damnable tumor. Hospice is bringing in some adaptive equipment. Dani is now home from school, to be near her mom and Kirk. So, if you feel inclined to send a card to the house, I think there are ever-present staff to read them to her!

hospice

Alison was admitted to UCSF over the past few days because of progression of symptoms. She had trouble with finding words and completing sentences, and her right arm and hand were not moving properly. A new MRI shows tumor progression that accounts for the symptoms.

She received another big dose of steroids, and remains on them. This has helped with the word-finding and ability to complete her thoughts, though Kirk reports there are still word-finding deficits. I haven’t spoken to her, but will see her tomorrow to be able to report how much she can read things like blog posts. She isn’t able to use technology devices, as best I can tell, so if she is not responding to emails, that is why. Dani spent the night with her last night, and perhaps can keep her up to date on any messages while she is with her.

The neuro-oncologist at UCSF does not have additional viable treatments to help her, so she and Kirk have elected hospice care as of yesterday.

She is going home today, with Hospice nurse coming out to do the assessment and help arrange for home equipment, like hospital bed and such. Electing hospice means she will forgo treatment looking to battle the tumor, but will receive the wide range of supportive, palliative and humanistic services that this program can offer Alison and her family.

I’ll have more ‘eye-witness’ reports for you all soon.

Love,

Deborah

Pretty tired

Alison had another infusion last week, and the report from her and Kirk is that it really knocked the wind out of her. She seems to be slowly getting some energy back – not sleeping quite as much – but her physical conditioning remains very challenged, and simply climbing a flight of stairs is exhausting her. Kirk is keeping up all the care he does, and he is pretty tired, too. I know that if he asks for your help in some errands or tasks at the house, that he has a wonderful group of people he can turn to. Thanks so much for being there for Alison and Kirk.

Infusion this week

Hi all,

The family gathered this past (rainy) weekend to give Alison and Kirk and little R & R and check-in. She is not sleeping well, so seems pretty tired. Her strength and stamina are diminished, and her vision never got back to pre-surgery levels. So she has some challenges in getting around where there are steps or uneven surfaces. Her emotions are up and down, which - based on poor sleep alone - is to be expected.

Her next infusion of the carboplatin is this week. She did well with the last course, with the only significant side effect being fatigue (and that could have been the meds that counter the nausea). We have our fingers crossed that this treatment will go as well!

Thanks to all of you out there who continue to support Alison and Kirk in your thoughts and deeds!

Deborah

Next step

Alison had another MRI last month that showed some progression, meaning the the clinical trial with the sonic hedgehog pathway drug wasn't working. So she went off that trial (stopped the experimental drug). Her oncologist offered the option of a more standard chemo drug (carboplatin) and she had that infusion latter part of February. She is tired, but otherwise coping well.

Her next infusion will be 3rd week of March.