Sunday night update

It's been a few days since my last update so I'll see what news there is to share.:

Each day I'm seeing small progress in my stamina and physical strength, but it's frustratingly slow. Such a drag that it takes so little to break down muscle and so much to build it up. Kirk and I are walking pretty much every day (as weather allows), and the stairs at home are always there as a form of exercise I'm required to take multiple times daily.

I saw my wonderful primary care physician (Dr. Peter Candell) on Friday and he had some concerns that we're addressing this week with a new battery of medical tests. Hoping his concerns are unfounded; will know more after tests on Tuesday. I will, of course, keep you guys posted.

Kirk and I have had Olympic fever over the past two weeks and although I'll be sorry to see the games end, I'm actually ready to spend less time in front of the TV. Hoping the end of the Olympics coincides with my increased stamina so that Kirk and I can finally spend some time enjoying activities with family and friends. This life-as-a-patient thing sucks.

I'm starting to taper my decadron (steroids) dose, so hope to see a decrease in my still pretty-voracious appetite. I spend way too much time thinking about food and figuring out ways to satisfy the food-beast within. And since Kirk is the person providing the food (most of it, anyways), I'd love to give him a break. (And, yes, I guess I just hinted that we'd accept offers of food from our friends.) :-)

Oh, and two other things: People who are still having trouble with posting to the blog, please contact my brother, Jon, at jbronstein2000@gmail.com for assistance -- whether it's having trouble posting or having trouble posting with your own name, or any of those kinds of things. And people who are trying to reach me by mail should address it to me at 51 Stevenson Ave., Berkeley 94708. And I presume you know my email: ajbronstein@gmail.com

Okay, I think that's it for now. Thanks for thinking of me. Love you guys, /ab

Great news; great night

Well, it's been a long time since I've had it in me to add my thoughts to the blog. Just too tired most of the time; my extended hospitalization really took it out of me -- most especially because I had about 10 days for all my muscles to atrophy and the recovery of those muscles is a slow, slow process. But I'm working on strengthening my muscles every day, trying to walk increasing distances, especially vertically, so that I can get back to a more normal kind of existence.

Those of you who've read yesterday's blog have seen that I had some pretty great news yesterday which made the day pretty emotional for me. I've been feeling pretty good overall, and so I was generally optimistic that the news from the oncologist was going to be good but I was a little afraid to be too hopeful, for obvious reasons. I'm so incredibly relieved by the news, and so is my family. We had a wonderful celebratory/birthday dinner with Kirk, Dani, Deborah, and Jen joining me in my happy, happy night. Completely went of the ketogenic diet (fun for me!) and just enjoyed myself. Much merriment; much silliness ensued. And, yes, I cried off and on, from just being so damned happy and relieved. (But then, anyone who knows me well know that crying is one of my favorite things to do when I'm happy, so you guys can just deal with it.)

Kirk and I are going to be making plans over the next days/week, figure out what our priorities are and how we make the most of our "month off." Hoping for a lovely Bronstein-Mitchel retreat to someplace lovely and relaxing, among other things. Meanwhile, I'll try to keep up with the blog myself, as much as possible, and will hope I can also have some occasional face-to-face visits with some of my wonderful friends who've been so steadfast in your support throughout this ordeal.

Love you guys,
/ab

Happy birthday, Kirk!

Hallelujah! Alison's MRI scan shows no progression of the tumors and obvious improvement in the brain swelling. Because of the issue Alison had with her last hospital admission - the lung involvement, which is still unexplained in terms of cause - Dr. Chang wants to hold off on any treatment for now, until her lungs are fully cleared. Her reasoning has to do with Temodar (or any of the chemotherapy agents) having a propensity to cause lung inflammation. So Dr. Chang's recommendation is to have Alison follow up with her planned chest CT scan, make sure that the lungs are healing up, and take a month off any new medications. In fact, she blessed the plan to continue to decrease the decadron (steroids), meaning Alison's immune system has a chance to fully re-charge. Dr. Chang reviewed the MRI (which she now considers the new "baseline", or best MRI yet) with Alison, Kirk, Dani and me, and generally was wonderfully encouraging to Alison to keep up her program to gain her strength back and do "what she wants" over the next month. Then, in a month, a new MRI and another discussion.

Kirk could not have gotten better news on his birthday, so we took the pair out to dinner, joined by Like-A-Daughter (LAD) Jen. Alison looked tired but happy, which she sometimes expresses by crying - you might need a program to know what the underlying emotion is with the crying, but hey - we knew. I'm hoping she had a great, righteous sleep last night!

UCSF day

Hi all, Alison has a long day, starting with labs and final visit with her radiation oncologist. Then to UCSF this afternoon for MRI and a visit late afternoon with Dr. Chang, her neurooncologist, to get those results and hear her recommendations.

Keep your fingers crossed for her!

A Medical Detour

Hopefully, Alison is having a smooth day today. Yesterday, I got an early call because AB was having excruciating knee pain. After some discussion, we had concerns that she could have a blood clot in her leg. She ended up with a doctor's appointment and then a test to look for clot (duplex ultrasound) and thank goodness, it was negative (NO blood clot). So while relieved, it did take a big chunk out of her day, filled with worry. She says it's so hard to be a "patient" all the time, and of course, when one's condition makes things like blood clots a reasonable possibility, there's plenty to stay worried about. We really don't have a definite explanation for what hurt so much, and now seems better - maybe a flare of inflammation as her steroid dose is decreased? She is still physically weak after her 10 day hospitalization, so her reserves are depleted. BUT, she is working on increasing her activity, getting strength back into her muscles. She looked pretty good when I saw her. Daughter Dani was there for a visit, so I know her spirits will be raised with that bubbly one there.

Next planned medical outing is Tuesday at UCSF. She will have a new MRI to see where things stand, and then an appointment with the neuro-oncologist there. For now, a smooth, event-free weekend would be welcome!

Home At Last

Alison is on her way home, finally! 10 days at Alta Bates, and she is oh-so-ready to be back in her nest. Kirk says she is going home with a couple of anti-infection meds despite the report that really NOTHING has shown up as the cause of the fevers and lung involvement. It may be this is reaction to the Temodar she was on. In any case, it is a prudent plan to keep her on the medicines since there are still a couple of slow-growing bugs where cultures haven't been reported yet (aspergillosis, legionella). Chances are good that this was a fever and lung reaction where a source will never be found.

Home to sleep in her own bed, see her cat, watch the birds, eat non-hospital food, snuggle Kirk - a GOOD DAY. Yay, Alison!

And Childrens Oakland buddies, we are still feeling all that love for you, now and forever (see previous post)...

Valentine's Day - special thanks to CHO friends

Today is Day 8 at Alta Bates, and Alison had hoped she would have been discharged today. It sounds (via Christa and Jon's info) that she is down to an anti-fungal medication in her IV. She is off the second antibiotic, and off oxygen as of today. Her fever has finally resolved. From what Christa said, the plan is for likely discharge tomorrow - and I know Alison is really ready to be home. There isn't a clear source for her fever and shortness of breath, but the final cultures (from the bronschoscopy) aren't in and may yet have the answers.

On behalf of Alison, to her friends and colleagues at Childrens Oakland: Please know that your generosity of gifts of your PTO to Alison has touched her beyond what words can express. Having her employment status furthered in this way - and keeping her benefits intact - is a testament to how Alison touches lives, but it speaks volumes about the character of the people that Alison works with. You all are truly heroes - always in the work you do, but also in the way you have taken care of one of your own. Please accept our gratitude, from the bottom of our hearts. Happy Valentines Day to all those who make this world a better place, and whose kindness is anonymous and heartfelt. Love to you from Alison's family!

Jon and Christa added:

We echo Deborah's gratitude to all her thoughtful and generous work team members!

We had a brief visit with Alison tonight. She is doing fairly well, stable on room air, pretty cheery, and waiting for her man to come and watch the Olympics with her. The "unknown-ness" of this setback is very frustrating and "hospitalitis" has set in (interrupted sleep, medication scheduling issues, etc.).

We are all wishing and hoping that tomorrow is the day she can go back home. Her treatment free "window" is rapidly closing and her goals for this time are NOT happening (weekend in Monterey with Kirk, family weekend in PS with us, etc.). Can a girl catch a break, please!

Bumps in the road

From the gal where every day brings new excitement, here is latest: her fevers persist (in the 99s and 100s, but not higher) but she seems to have more and more shortness of breath and low oxygen levels. This is now 8 days of unexplained fever, despite antibiotics and the usual work-up for cancer patients with fever. There is now an Infectious Disease (I.D.)specialist on her case, which is a good thing -these folks are really slick at finding what the cause is. He has ordered a bunch of specific labs, ordered a chest and neck CT/CAT scans, because neck gland swelling is another recent development. The chest CT came back with scattered "particulate matter", so now Alison is scheduled to have a bronchoscopy this afternoon - that's the test where the doc looks down the respiratory tract and can take samples for culture, or a biopsy if that were needed. This might be the source of the fever as well as the cause of her low oxygen levels. As of a few minutes ago, she still hadn't gone down for the procedure, and once it is done, we probably won't have any answers right away because the samples have to be sent to the lab for growth, analysis and such. But at least we have some answers on the way. The ID doc did start her on some different antibiotics. If this is fungal, of course that will change yet again. Poor sweetie, she has her oxygen on because without it her levels drop too low. She is napping a lot, and glad for her quiet, private room.

Despite all of this, she remains in decent spirits. She is relieved to be there at the hospital, rather than running back and forth to the ER, and she speaks highly of the nursing care. While she is not a fan of the food, the insult-to-injury today is that she can't eat at all until the bronchoscopy is done. And although her hunger Beast is much better, that's still a long time for her not to eat! Kirk has food ready to toss to her as soon as she is cleared to eat...

So this is obviously an unfortunate bump in her road - she was hoping this was the week to get stronger coming off the radiation and chemo, and she had the trips to Monterey and Palm Springs planned. For now, she is aiming just to get this fever stuff sorted out, treated and put behind her. Kirk, Jon and Christa have kept her company at various times, but please keep sending her your good thoughts! She can use all manner of good energy sent her way.
Love, Deborah

Day 4 at Alta Bates...

Brother Jon here…

As of Wednesday morning, AB is still in the hospital -- she has moved beds a few times and has now settled in a private (and much quieter) room on the 4th floor. Christa visited her on Monday, and I came on Tuesday, (and of course, Kirk is there endlessly.) Her spirits are good, but she is very tired, and we are just hoping to figure out what has been going on so she can come home. Hospitals are no place to recover!

She is finishing up her third day of IV antibiotics -- which is the typical course (I think. But what would I know… I know more about computer viruses than the real things!) and we are really hoping that she gets discharged today. But I would not be surprised if they hold her one more day. Christa and I are planning to visit again and get the latest information… and we promise to share it as soon as it is available!

There really isn’t too much other information to offer right now. Kirk and Alison had originally planned for a get-away in Monterey this weekend, but that does not seem in the cards. We still have a tentative field trip planned down to Palm Springs for the weekend after, but it is all one day at a time right now.

On another note, Lara has given me g-d like privileges on the blog, so if you are having any issues, please feel free to contact me at jbronstein2000@gmail.com and I will try to help you. I quit my job at Philips this week, and have nothing but time on my hands!

Fever Update

I talked to mom a few times tonight and she says she's feeling much better; she's definitely sounding that way, too. For the few days that she was at home with the fever she was pretty quiet and seemed very tired, frustrated, and just "down" in general. She was much more chatty when I spoke with her this evening, which was encouraging for both of us. She says she's been feeling much better since she started the antibiotics and is once again cursing the hospital for being a place of little or no sleep. But she's fine with being there, all-in-all, and was all tucked in to read her book and (attempt) sleep when I spoke with her around 9:30p.m.

Thinking healthy, restful thoughts for my wonderful, wonderful mom, and so thankful she has all of you to provide such strong support.

-Dani

Fever

Alison is currently in the hospital at Alta Bates to treat a fever that she has had for the last 3 days. It hasn't been very high, and the only symptom with it seems to be profound fatigue. Last night, Kirk determined that her throat looked pretty red, and they went to the ER. Because the blood work seemed to indicate possible bacterial infection (not a change in the total white blood cell count, but the type of cells that showed up are the kind that fight bacteria - a left shift, for our medical folks), they admitted her and started her on antibiotics (vancomycin). She and Kirk were up all night (he bemoans the fact that their Saturday nights seem to include trips to the ER), and we hope she is resting now.

Not great timing, as Dad and Judy traveled up this weekend to see her. A different kind of visit, I suppose. For her fans, the hospitals discourage or disallow flowers for patients who are immunocompromised, and the only allowable balloons are mylar and she isn't really crazy about those, so please send your good wishes on the blog or via card to the house, and she will hugely appreciate that.

We'll keep you posted as we learn more.

Final day of radiation

So it's been a while since I've posted but feeling a bit better right now and I'm pretty excited that I only have one more day of radiation left (tomorrow morning), then I get a break from treatment for a couple of weeks. Treatment has not been fun, as you know if you've been following this blog. I seem to get just about every miserable side effect you can get from radiation and chemotherapy. (Including that, for the second time, I've had to stop my chemo treatment due to a drop in my platelets below the threshold.)

Tomorrow we'll have our final meeting with our wonderful and kind and gifted neuro oncologist, Dr. Rembert, get final questions answered and solidify our plans for maintaining contact with him over the next weeks. We're firing my medical oncologist; so not happy with his care (if you can call it that). We've been doing some research to find out which oncologist(s) we might be happier with. We've got a couple of names. But really, oversight of my care gets transferred at this point to Dr. Susan Chang at UCSF, who's AMAZING, and we'll be meeting with her on 2/23 (after I get labs and MRIs done) to plan my care going forward.

Looking forward to this weekend. My dad and his wife are coming up to visit me; so happy that I'll get to see them! Since it's SuperBowl Sunday, we'll be hanging out at Jon and Christa's (brother and sister-in-law) on Sunday, where they'll be hosting SuperBowl festivities. Some of us aren't really big football fans, so we'll probably hang out in a different part of the house, at least some of the time, enjoying less raucous activities. And, knowing Christa, lots of yummy food.

As a side note, I've gotten so many sweet messages and gifts from so many of you over the past months. I'm endlessly touched by your thoughtfulness, your kindness, your generosity, your affection for me; it reduces me to tears (in a good way). One thing I'm regularly asked is if there's anything you can do to help out during this rather challenging time, and the one thing that I think we could use help with has to do with food. Keeping me fed is sometimes more than Kirk can keep up with. (That should get better as I get weaned off Decadron, but that's going to take some time.) So if anyone's got the time and interest to make a ready-to-eat meal (like a meatloaf or quiche or something where we can heat up a serving as needed), Kirk and I would not refuse the gift and would be so grateful for it. Unfortunately, the hard part right now is that I'm on this ketogenic diet of very low carbs, high fat (!) and protein, so while it's not a difficult diet to adhere to, there are "rules." (It's a modified ketogenic diet so Kirk and I can 'splain what works and what doesn't.)

I expect to be feeling a bit more like the old Alison once I'm off radiation and get weaned off the Decadron (although the weaning process is supposedly not a lot of fun for me or the people around me -- sorry Kirk!). If that's the case, I'll hope to do more postings during my break and have some time to talk to people, maybe see people -- although I'm also using the two weeks to get away to Palm Springs and to Monterey and who knows what else.

Love you guys. Thanks for your continuing support. /ab

A change of scene

Alison is back home now, going for the LAST THREE radiation treatments, hurray! And as of this writing, today's sesion should be done and she only has the last 2!!!! I know she will say a not-so-fond farewell to that radiation mask, it has gotten so tight.

So, she spent the weekend in Aptos being her sweet self. We did not exactly set the town on fire, but she did walk a bit each day, spent time with her daughter, rested, visited, read, caught up on some things on her To Do list. Kirk stayed in Berkeley to attend to a multitude of projects and needs, but I hear he got a wee bit of relaxation with some visiting friends. He has been 'on duty' for such a long stretch that I was itching to give him a break, and finally got to do that. Those of you who have done long-term care-giving know how much he needed to be 'off-duty' even for a little bit.

Alison is still super-tired at this point, which is to be expected. The irony is that she isn't sleeping fabulously because she is up at night to have a snack/visit the facilities, so she needs lots of resting and naps. The Hunger Beast seems a bit more contained (though not resolved, to say the least), but I think the modified diet has her going in the right direction with less shakiness. The radiation and steroids are sapping her muscle strength (think about what happens every time you get up from a chair - you are using your big quadriceps muscles), but she is trying to combat that with making sure she does something physical every day, even if just walking the stairs in her home. We are hopeful that once radiation is done and maybe the steroid dose goes down again, she will build her muscle strength and general energy levels back up. Her spirits are in reasonable shape, still plenty of times of sadness and worry, but it was also good to see her relax and enjoy the change of scene. Now I'm working on getting Al and Kirk back to Aptos to take care of the pair of them!